History

Journal History

Monday, March 30, 2009 9:17 AM CDT

2316 days post transplant

The robins & bluebirds have returned and there are several hints of spring that are evident all around us.
There has been a long stretch between our updates. Our winter was quite intense and cold and we thought it would never end but it has and the beauty and freshness of spring has blown in.

Isaiah has had a rather difficult time the last couple months. His health has been pretty good except for the colds and infections he managed to catch. This caused him to be absent from school numerous times and after so many absences catching up with the school work was hard to do. A certain malaise had set in and apathy. Grades fell dramatically. We were relieved that the end of the term is here and hope that this last semester will be better.

The one bright spot in last 3 months was that Isaiah played on an intramural type soccer team for a few sessions and absolutely loved it. The team lost every game in the second round (of games) but they had so much fun playing that it didnï¿½t matter to them. This was a good diversion and good exercise.
Isaiah has started taking violin lessons again and has an excellent teacher. We hope he starts to make more progress as it his desire to play well ï¿½but hard to reach that goal if one doesnï¿½t practice! Now he is taking it a little more seriously so weï¿½ll see what happens.

We hope that this last semester will be a better one for Isaiah and that he takes school as seriously as he has in the past and buckle down for the last semester of 8th grade. High school is just around the corner. Can it be that time already? Wow.

Mishael has taken up rugby on an intramural level. Heï¿½s the only freshman on the team and is constantly sore and bandaged up (as was actually the case even before playing rugby). He absolutely loves playing and being on the team. It is good for him but we pray that he does not get seriously injured. He would love to have practice even on the days off!! He has continued with his piano and is doing quite well. He seems to really enjoy his practices and does so with very little prompting from his parents! Thatï¿½s a good thing. Now if we could only have that same initiative with homework and chores! He also needs to take his school seriously and all we can ask is that he does his best.

We will be heading to Duke for Isaiahï¿½s yearly tests pretty soon. He can hardly wait to (as always) head down there. We are very anxious to see all our old our friends and will be especially glad to see Jill, Alex and family who happen to be coming to Duke at the same time we are! Not even planned in advance!!

Thank you for still thinking of us and checking in on us. We plan on putting some new pictures up tonight! God Bless you.

Wednesday, November 26, 2008 10:17 PM CST

2192 days post transplant

Today, the day before Thanksgiving we have much to be grateful for. Today is Isaiah’s 6th re-birthday!!! It has gone unnoticed by the rest of the family –but not by me. It is such a milestone. The date always hovers around Thanksgiving as does Mishael’s birthday ( which is in 3 days) –so how perfect is that?!

It has been a long time since my last update. Summer flew by what seemed like too quickly. It was filled with summer camps –church camps, cancer camps and for Mishael, band camp –which he enjoyed immensely even though he was hesitant at first. Isaiah fell in love with wakeboarding and dreamt about it for the rest of the summer. The fact that we don’t have a boat or easy access to one was irrelevant. We did manage to find a nice (used) wake board which Isaiah was able to get some good use out of at the very end of the summer. It was an absolute thrill for him –a dream come true –literally.

Aside from this high point of the summer, we took a family road trip down to Duke for Isaiah’s annual check up. We all went this time. It was a great trip and good to travel together. Our first stop was Duke Medical center. All of Isaiah’s medical test was good. We discovered that he was on his way to anemia --so we had to start him up on some iron pills. He has some endocrine issues that need to be followed up on and we did that here at U of Mich. last month. Today he had some blood tests which (depending on the results) will determine the next course of treatment for this.

After a wonderful stay in Raleigh, NC and visiting some of our dear friends –it was off to visit Isaiah’s transplant friend Alex and his family–near D.C. Unfortunately, our timing was not the best as Alex was away at camp. We were able to visit with the rest of the family for a few days and had a great visit. Then if was off to see our friend Cindee (who happens to live a stone’s throw from Alex’s house) and we spent another few lovely days with her. It was a great trip –medically and socially! It’s what our family really needed

School was off to a good start for Isaiah. He really buckled down from the very beginning in an effort to do well his first semester. Unfortunately, he has gotten sick quite often and has missed a lot of school thus far. Catching up is really a struggle for him as he gets easily overwhelmed –which makes it harder to focus and complete assignments. We hope that the next semester goes a little smoother.

These are difficult times we live in. Faith, family and friends are vital. Thank you for continuing to check up on us and please let us know that you stopped by. We will put some new pictures up in a couple of days!

We wish all of you a wonderful holiday season. God bless you.

Pat, Sal, Mishael and Isaiah

Wednesday, June 18, 2008 8:16 AM CDT

School is OUT!!
It has been a good school year for both the boys. They have really done a great job considering we moved to a new home and school new district. Socially it has been much more difficult to adjust. .It has been a busy few months wrapping up the end of the school year with concerts, project deadlines and exams.

Mishael went on his school trip to Washington in late April. They seemed to have a fantastic and educational trip. Of course out of all the kids on the trip (almost 300) our son was the only one to get a trip to emergency! No need to go into detail other than to say that Mishael ran into a pole at full speed, and hurt his shoulder. Fortunately, no dislocation or breaks --just lots of pain. It healed well and we are thankful.

Isaiah ended his school year with a great report card and that makes us happy because we see that in spite of all the treatment he is able to do well when he works at it and focuses. Getting there is not easy as he is often overwhelmed and when he feels like that is incapable of working very efficiently. It can be a struggle as he actually starts feeling very ill on top of everything.

As I write this, Isaiah is at camp already. He decided to try the Catch a Rainbow camp (American Cancer Society sponsored) for the first time. We are anxious to find out how things are going but will have to wait a few more days.
Health-wise Isaiah is doing well. His chronic skin condition ([GVHD] dryness and rash) which he has lived with for years seems to have finally “burned itself out”. Topical creams that we used every day (both immunosuppressant and steroid creams) we use very rarely –so this is a nice change. However, we are ready to apply quickly if the sun (or anything else) causes any skin flare-ups.

Last week Isaiah and I were in a fender bender. Praise God that we were not hurt but just shaken up. We were on the way to the orthodontist because Isaiah has some issues with teeth growing completely sideways in the gums. The latest is that the rest of his baby teeth need to be pulled very soon and orthodontics are needed to be able to make room for the teeth. We don’t know if they will completely straighten out or if he will need some surgery to help that along. I guess I wasn’t ready for all that happened that day and the cost that we did not plan on. But, that’s life and putting it in perspective makes it easier to deal with.

Sal and I have planted a big garden this year and honestly don’t know exactly what we’re doing. We’ve planted a small garden in the past but this is now double the size and more of a variety. On the subject of variety --somehow thistle has invaded this area and it is incredibly difficult to get rid of. We look forward to the fruits of the labor minus the thistle.

Thank you for thinking of us and still checking in on us. Please sign our guest book and let us know you stopped by. It is very much appreciated!

Friday, April 25, 2008 8:03 AM CDT

It’s springtime, finally. The birds have returned from wherever it is they go and the spring flowers are coming up. What a difference it can make in our moods up here in the Midwest!

Since my last update we had a Drs. appointment at our hospital and everything checked out fine. Dr. Inoue was please with Isaiah’s progress and said that Isaiah has changed so much since he had seen him last (over a year ago because the other Dr. had seen him the last few times). He said that he doesn’t know if he would recognize him right away had he passed him in the hallway! I guess that what happens to growing pre-teens –they start changing dramatically at some point!

On our way home Isaiah and I stopped for lunch. As we sat there he pointed to his rib area and told me that it itched and there was a rash. Of course that is not unusual for him but it happens less often now days. I said we’d take a look at it when we get home. He didn’t say much about it during the weekend except that it was just an off feeling about it and it sometimes hurt. By, Sunday way past night at midnight I figured out that it sounded a lot like shingles! Who was I going to call then! We were so tired. I quickly remember that we had some acyclovir that Isaiah had used for prophylactic reasons (just for there types of things) but had been off for about a year. We searched our med drawer and there was some (yay!) so we started it right away. By the next day we confirmed that it probably was shingles.

Fortunately, it was a milder case. We were very grateful for this. It kept him out of school for about a week. It was painful and seemed to make him very tired for quite some time but he recovered well.

Other than that, things have been going better. Isaiah can hardly wait for the school year to be over but has really been trying hard in school and getting solid grades. He is taking his violin playing a little more seriously and working to keep 1st chair until the end of the year. Isaiah just started golf through the school and seems to be enjoying that. After so much sitting around this winter –it is a great change plus it’s not an endurance or contact sport --so perfect for him!

Mishael is trying his hand a track. He’s been a trooper with practice and now is running hurdles too! He fell the other day and hurt himself but is healing well. It’s a good physical and social outlet for him –he needs both. Next week Mishael is going to Washington D.C. on his 8th grade trip. We are a bit nervous about it and hope all goes well (and the kids behave themselves)!!

Right now as we wrap up the school year we are trying to enjoy the kid’s school concerts (which have been really wonderful as the school district has a fantastic band and orchestra program). The regularly make it to the state level competitions too.

Spring and summer will be filled with camps, church camp meeting and other activities. We are going to go to Duke for Isaiah’s 6 year post-transplant studies in August. The whole family is looking forward to this road trip!

Thank you for thinking of us and still checking in on us. Please sign our guest book and let us know you stopped by. It is very much appreciated! Once again we will try to get some new pictures up soon!

Monday, March 3, 2008 10:44 AM CST

I’ve lost track of how many days post transplant Isaiah is. I now calculate it in years and months.

The new year has certainly come in as a lion. We have had snow, snow and more snow. Unfortunately, it has been more of a nuisance than enjoyment because it comes in spurts, does not last long and one can’t get in any good sledding or snowboarding. Now we have had enough. Today is a very mild winter day and there is a scent of spring in the air. Deep breath! Oh well, a cold front is heading in, again, and we are expecting more snow tomorrow.

The boys have had an opportunity to enjoy a number of camps in January and February and they did get to do a little bit of “snow related activities”. Mishael loves the snow but Isaiah does not. In fact, I suspect that winter and gray skies gets Isaiah down but I suppose that is not unusual for us who live in the cold north. We are looking forward to spring and exploring the surrounding areas more as there are many parks around here and of course, summer in Ann Arbor is quite nice!

On the medical front, things area going quite well. We have an appointment up at Hurley in Flint (where we are still being followed) at the end of this week. An eye Dr. check-up is scheduled in a few weeks to see if there is any change in his cataracts since the last visit. Isaiah had 4 teeth recently extracted as the adult teeth were coming in and the baby teeth (roots) were not absorbing. That was quite a brutal session but it had to be done. We also need to get going with another round of vaccines and I have read too many things about vaccines to be comfortable with that –but I suppose we have to do what we have to do.

We are looking to go to Duke for his 6 year check up(can it be!?) later this summer and are already planning that now. Isaiah, as usual cannot wait and Mishael is glad that we are actually planning a “road trip” to North Carolina and this time he gets to go too! It has been three years since we have had a family vacation of this type and we look forward to visiting some friends along the way.

School is going well for the boys and they are doing very well. The enthusiasm of a new school has waned and they live from break to break. We are very pleased with the school system and the school staff and it certainly has made the transition to our new home and neighborhood much easier.

Thank you for thinking of us and still checking in on us. Please sign our guest book and let us know you stopped by. It is very much appreciated! I’ll try to get some new pictures up soon…

God Bless and keep you.
Pat, Sal, Mishael and Isaiah

Monday, January 7, 2008 8:54 AM CST

HAPPY NEW YEAR!!

We hope you had a wonderful holiday season! Thank you for still checking up on us.

The holidays have gone flown by and here we are into another year already. School has started up and the 2-week long Christmas break is over.

The past few months have been really busy with not only the holidays but also with a few milestones --Isaiah’s 5-year transplant anniversary, Mishael’s 14th birthday, and the sale of our house!! All three of these events are reason to celebrate and we did in a very “low key” way as we were just too busy to do otherwise. Next year we will have to plan some very special birthday celebrations.

We are relieved that our house sold in less than 2 months! What a blessing in Michigan’s housing market! It is a big burden lifted and we could finally move everything into the new house and finally settle in! Of course, settling in completely may take many months but at least all our “stuff” is here! Isaiah has already asked if we can but the house back one day. He is as nostalgic as I am. The move has been bittersweet. There is so much that we miss about our old neighborhood. However, change is good and we have new adventures to embark on.

On the medical front things are going quite well at the moment. In November, Isaiah had a series of shots (4) all at once and suffered for a week just feeling miserable. This put him a little bit behind in school and it took weeks for him to catch up. Unfortunately, he is due for another 3-4 vaccines and then has to have 4 baby teeth pulled at once! In addition, a follow up eye appointment is scheduled due to tiny cataracts that we noticed at his last appointment. January will be a difficult month. His skin condition –or the Graft Versus Host disease that has been almost a constant for the last 5 years has nearly burned itself out. This is really great news as we don’t have to apply all kinds of creams daily as we did in the past. It flares up once in awhile and we try to address it right away so that it does not get out of control.

We recently got the complete results from the endocrinology department here at University of Michigan. It appears that all Isaiah’s hormone levels are within the normal ranges and he is showing some growth. He is still one of the shortest kids in 7th grade but we hope he has a little spurt soon. I have to admit that yesterday I felt a bit awkward when he was introduced to someone and they asked how old he was –8? No, he is 12 we said. Sigh… We have a follow-up appointment this summer to see where things stand.

The boys have some winter camps in the next few months so they are very much looking forward to those. We hope to have some more snow coming soon.

As always, thank you for thinking of us and still checking in on us --and signing our guest book! It is very much appreciated!

God Bless and keep you.
Pat, Sal, Mishael and Isaiah

Monday, November 26, 2007

IT IS 5 YEARS POST TRANSPLANT TODAY!!!

HAPPY RE-BIRTHDAY ISAIAH!!

(We'll be updating in a few days)
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November 9, 2007

It is high time to update again. We are at 1,810 days post transplant.

This is always a difficult time of the year as it is the time period that Isaiah was diagnosed –right before Halloween. When the leaves start to turn –as beautiful as it is here in Michigan, it really brings back some sad memories. It has been 7 years from diagnosis and 2 years since we packed up the car for our trip and headed to North Carolina for transplant. November 26th will mark 5 years from transplant!!! What a blessing to have had that option and to have survived. This month is a milestone in so many ways and we will be celebrating life and our new normalcy. But, on to what is happening today!

School is going well for both boys and grades are good. We are pleased as they are adjusting to school very well and still liking it very much! Isaiah has had only a few absences so far this semester and those have been due to the pneumonia and an upper respiratory infection –certainly not the nearly 40bsence rate of this time last year!

I had Isaiah’s parent-student-teacher conference yesterday. Generally, things went very well. We are seeing some side effects with Isaiah’s capability to focus on work and inability to sometimes “get going” in a timely manner. We are trying to address that. He tried to explain himself to the teacher as to why some things happened the way they do and finally said, “...I’m trying hard, you know I’ve been through so much…” That hit me at the heart level. He has never verbalized this before and never used it as an excuse for anything.

On the medical front we are have started re-immunizing. Actually, today Isaiah will have another set on vaccines today. We visited the endocrinologist last month and will have some blood tests drawn today to check some levels. Based on the results we will decide what steps to take in relation to any help he may need with his growth. Right now, he has shown some recent growth but is still in the very low on the percentage growth chart (for his age). We pray that he will grow more and reach a decent height. Perhaps it seems silly for me to be worrying about that –but it is an emotional issue and just another thing to have to deal with.

Mishael is doing well. He has started trombone lessons again and actually asking to get back into piano lessons. He is enjoying his “bright” yellow room and spends a lot of time in it. His hobby, at the moment, is working on a quilt! He wants to make it for himself, as it is his “practice quilt”. He approaches sewing as if he is fixing a machine –it’s very interesting. He is envious that Isaiah is taking sewing in school. Unfortunately, Mishael could not get into the class. We’ll just have to fine another class if his interest continues.
Our move to the Ann Arbor area has gone very slowly. We have not settled in here quite yet…are there any reliable contractors out there?! I really wonder. We’ve had quite a time and are disappointed repeatedly with shoddy workmanship!

Well that’s about it on the Bingham front. I hope you all have a wonderful holiday season. Enjoy your times together and the precious memories that you are experiencing. Seize the day (and the moment).

Thank you for thinking of us and still checking in on us --and signing our guest book! It is very much appreciated! I will try to put up some new pictures soon.

God Bless and keep you.
Pat, Sal, Mishael and Isaiah

September 22 --Isaiah and Sal's Birthday!!!

Today is Isaiah’s 12th Birthday!

That’s the good news. The bad news is that he’s in the hospital recovering from pneumonia.

Going back to the end of August –I just wanted to mention that we have been slowly packing and trying to finish up our home schooling. Unfortunately, we ran out of time on that and have quite a bit more to accomplish. In the meantime, the boys started middle school in our area. They have gotten off to a great start and really like the school the teachers and the program. We are not sure how we can accomplish both home school requirements and new school at the same time – I guess we will have to figure it out.
We have held off on music lessons as we still have to find the right new teachers in our area. With all the chaos of moving, waiting for the flooring to come in the new house (since July!) we decided to take a little break and pick up music lessons as soon as we can. Mishael is back in band at the school and Isaiah is in the orchestra, so we have not abandoned the instruments completely.

School is off to a great start and Isaiah’s entire 7th grade classmates were at camp last week. (all 300 students). The weather was fantastic. I had volunteered to come and spend the latter part of the week as cabin leader for a group of girls. (BTW –they were the best group possible and I really enjoyed meeting them!) By the next day Isaiah seemed to be getting progressively worse in how we was feeling and spent a great deal of time at the health center. By evening, his temperature had started to climb to 103 and Ibuprophen was barely touching it. (So glad he doesn’t have a port.) We all decided it was best to head home. Fortunately, there was someone who was able to take my cabin. We all felt sad that we had to leave early as the next morning was the end of camp but that’s how it goes. Isaiah seems to have missed out on so many fun things even after transplant.

We got home late Thursday evening and it was a miserable night. Isaiah moaned and groaned almost all night. Poor boy was sooooooo miserable but despite nausea, vomiting, and temperature was so polite and grateful --amazing. Temperature was even higher –almost 104. It slowly went down and by morning we thought that he had gotten over the worst of it. He remained in bed all morning and his breathing was shallow and difficult. He complained of a constant pain in his left chest area. I got a bit suspicious. We both wondered if it was possibly pneumonia and decided to go get it checked out. After discussion with a nurse at the U of M medical center and his NP at Duke, we headed off to the emergency room. To make a long 7- hour story short, we ended up being admitted and we laughed at how we predicted that we would have blood drawn, x-rays, and possible have to stay the night. That’s exactly what happened and now we have established ourselves at yet another new hospital. So Isaiah is with his dad on the bone marrow unit and they are both celebrating birthdays today!!

Well, I guess Mishael and I had better head up to the hospital. We hope it won’t be a long stay.

Anyway, I would like to ask you to keep the following families in your thoughts and prayers. Alex, Isaiah’s next-door neighbor during transplant and had skin cancer surgery multiple times in the past 5 weeks on his face.
Alex’s website

Please remember Alexia and her family during this most difficult time. Still praying for a miracle.

Alexia’s Page

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Thank you for thinking of us and still checking in on us --and signing our guest book! It is very much appreciated!

God Bless and keep you.
Pat, Sal, Mishael and Isaiah

Wednesday, June 27, 2007 7:26 PM CDT

1674 days post transplant

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Our guestbook appears to be WORKING NOW --please let us know you stopped by!!
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Summer has arrived!

Things are going pretty well. We are struggling a bit with home school as there is still much work to do to finish up the year. It’s now difficult to concentrate with the summer weather, the upcoming camps and in general “more fun” summer activities. Somehow we will manage to finish --but I really have to push hard.

In the meantime, Isaiah and I went for a very quick trip down to Duke for a check-up in early June. Instead of the two scheduled trips this year we were able to change that to only one –and this was the one. We had our 5-year post transplant tests done a bit early. The results of the tests were all good –within the normal range. The only thing that was a bit disappointing was growth. Despite normal hormones, Isaiah has not grown as much as we had hoped and is in the 5th percentile (down from the 50prior to transplant. We thought that perhaps with the complete wean of the steroids last December would give him a little boost but it has not. We will be looking for an endocrinologist closer to home so that he can be followed closely by someone in the area. By the fall, we will see if there is any significant growth. If not, then we will need to consider growth hormones. We managed to wean another two meds! In the next 2 months, if all goes well, the plan is to wean another 2. There will still be a few left to take but were heading in the right direction! Our Dr. appointments are now every 4 months.

While at Duke we had a short time but managed to see some old friends and catch up a bit. We were able to get together with Carrie (Isaiah’s best buddy and a dear friend) and her husband Mike. It is always a blast to see them. We saw our friend Marcella and her son Sean (same diagnosis as Isaiah & all the way from Italy!!). So glad we came the same weekend this year!! We had fantastic dinner together with them and Carrie Horton and enjoyed every minute of our visit together. It was as Marcella says –a gift to be together. Isaiah left Durham complaining that he could not wait an entire year before coming back –and that next time we come it has to be for at least a week!

For the remaining couple of months of summer the boys will be finishing their schoolwork and attending a few summer camps. We are also looking forward to the Ann Arbor Art Fair this year and that is definitely on our calendar.
We will also be completing our move and hope to (finally) settle in our new house by late August.

Thank you for thinking of us and STILL checking up on us. Please let us know you stopped by!!

God Bless and keep you.
Pat, Sal, Mishael and Isaiah

Saturday, May 12, 2007 8:19 PM EDT

1629 days post transplant and approximately 2,387 days since diagnosis.

We are heading towards our 7-year mark (since diagnosis) this fall!

Spring has finally arrived to our corner of the world and our neck of the woods. What a beautiful time of the year! As predicted, it is much harder to stay inside and do school work when the sunshine and warm weather tease –but we must persist, inch on and get our work done or we’ll be going all summer and into the fall at this rate.
As the school year is starting to wind down so are the activities. The boys really enjoyed playing in the Flint Institute of Music Philharmonia this year. It was a wonderful season and great experience. Piano, trombone and violin lessons are coming along --I think a little more progress could be made if there was more practicing going on!! Mishael’s band at the middle school is winding down too. He really enjoyed being a part of that as well.

On the medical front there is a little news. Isaiah had his most recent clinic visit in mid-March. It was quite routine except that it was difficult to draw any blood from the port for the blood tests. Well, Isaiah has never had any trouble drawing with the 2 ports and numerous lines that he has had through the years. Nurse Mary wondered if he perhaps grew a bit and stretched it out. That would be a wonderful reason for it not to draw –the growth part. It seems that Isaiah has grown a bit recently, but it’s hard to say when the scales are all different and we’re talking millimeters. Back to the port - we were going to discuss with our Dr. getting it out anyway so it was really time to plan on parting with it. Isaiah (like some other kids) seems to have an emotional attachment to his port and we had been talking about getting it out this year after the flu season. We convinced Isaiah it was time to let go and now he was emotionally ready too. We scheduled surgery and 3 weeks later it was out!! Done! Another chapter in this journey has closed.

Speaking of growth…we are very anxious to see how the growth hormone situation is coming along. Dr. K (at Duke) wanted us to come as soon as we could so that we could continue with the endocrinology studies right away since this (due to Isaiah’s age) is our window of opportunity to figure out what steps we need to take to monitor and encourage Isaiah’s growth. Isaiah and I will be going to Duke next month.

Isaiah has been feeling pretty well lately. He is still on a number of meds but just about 10 days ago we were able to start weaning one of his immunosupressants (cyclosporine). So far so good. Now that the weather is getting warmer, Isaiah has decided that he wants to enter a Ninja warrior competition (that takes place in Japan) and that he must start getting in shape! It is a very difficult competition and the competitors are most 2-3 times his age but he is really fascinated by it and we’ll see what he does to get into shape!

Mishael is our big helper at home and loves to cut the grass. This is his opportunity for some allowance money and he tends to spend it almost before he earns it! He is looking forward to the usual camps this summer and is currently on the lookout for lawn mowers that people have discarded because he is Mr. Fix-it. Fortunately, (due to space limitations) we have not found any lawnmowers!! Mr. Fix it had lots of projects “pending” so it’s just as well that that we are not adding lawnmowers at this time.

My mother has recuperated well from her accident and she now has a new vehicle and finally passed all the tests that now give her the green light to drive. There were numerous physical, neurological and driving tests that she had to take before they would allow her to get back on the road. We praise God for her healing. Now we can look forward to seeing her more often!

Thank you for thinking of us and checking up on us. Please let us know you stopped by!!

God Bless and keep you.
Pat, Sal, Mishael and Isaiah

Saturday, May 12, 2007 8:19 PM EDT

Sunday, March 4, 2007 8:43 AM CST

1558 days post transplant
Time has once again flown by and we’re into the winter thaw. Much to Mishael’s chagrin, we have not nearly had the amount of snow that he had hoped for and he wished so much that we could have gotten a large portion of the snow that upstate New York received a few weeks ago (or even a small portion).

Christmas came and went. A few days after Christmas, the Binghams went on a long planned trip to Baltimore for a Christian Youth Conference. It was a very intense, interesting and blessed experience. There were thousands of young people from all over the United States and other countries attending the lectures, visiting together and attentively soaking up the lectures and sermons. They were an older crowd than our children but we all enjoyed our time spend in Baltimore for many reasons despite the fact that Mishael, Isaiah and Sal we all getting over some bad colds. One of the high points for the boys was that we stayed in a lovely hotel right on the water overlooking the harbor. The elevator was all glass and the kids sure enjoyed the elevator rides and the beautiful view. One of my high points was that one evening we had dinner with a dear friend of mine, Cindee (originally from Michigan) and her husband. Oh how time flies –it was so good to see them.

On the “medical front” there is not much to report! Isn’t that a blessing!! It seems that ever since we started home schooling, Isaiah has not had some of the mysterious ailments that he during those previous months (when we desperately tried to figure out why he was experiencing all those aches and pains frequent nausea and other curious symptoms that had no logical explanation). We can’t be certain, but it appears that there was a lot of anxiety associated with going to school and that in fact starting home schooling was the best thing for Isaiah –at least for this year. Both the boys are enjoying the flexibility that they have. There is no doubt they have more work to do with the home schooling program and we are already quite behind (because of our late start) and struggling to catch up. This has really transferred some of the anxiety to me!! Getting organized and putting structure into our day is quite a challenge for the Binghams!

At the moment (and this changes from day to day), the only transplant related issue that keeps on popping up is the skin GVH rash that just won’t burn itself out. It is appearing in places it has never appeared before and sometimes looks like welts and not a rash. We have learned that we have to address it right away or it can get very nasty (out of control and itch like crazy).

We are currently working hard to get our house on the market so we can move closer to Sal’s work in Ann Arbor. We are sad to be leaving this area -our “cozy little home”, church and friends, but it is time to move on. At least we won’t be that far from here when we finally move.

My mother continues to recuperate well from her automobile accident. Her physical and speech therapy has really helped her out. We hope she will be able to find a new vehicle soon so that she can be more mobile and independent once again.

Thank you for thinking of us. Please let us know you stopped by!!

God Bless and keep you.
Pat, Sal, Mishael and Isaiah

Saturday, December 23, 2006 1:45 PM CST

1489 days post transplant

It is officially winter but there is no sign of it outside except for the Christmas decorations and lights all over. Thanks to “el Niño”, it appears we will have a snowless Christmas. The boys are anxiously awaiting Christmas morning although we have repeatedly had the conversation there will not be that much to open this year.

The past few months have been quite uneventful and that is really good. We started home schooling last month. It took a few days to unpack the 100 or so pounds of school materials. It was in one word “overwhelming.” So much material and such a late start certainly does not help the stressful situation. Fortunately the boys were anxious to start and quick learners --so that makes it easier. This does not mean that it is easy in any way. There is much material to cover and so many classes! We have added Spanish to the curriculum, which makes me very happy to be able to teach the boys. I just love teaching Spanish!

Mishael has gladly gone back to band class at the public school. This was one class he missed very much from last year and his teacher was so glad to see him and have him back in class. So, every day he goes in for first hour (yes I drive him in and come back in an hour). Isaiah manages to get up by the time we come back home so that works out well for all of us. They both miss their friends at school very much but seem happy to be at home in a more relaxed atmosphere. We will be moving (slowly) to another house starting in January so the home schooling situation will be perfect for this year. We will see what the next school year will bring.

The past few months have been quite uneventful for Isaiah heath wise and that is good. We passed the 4-year post transplant day with hardly a thought and nothing really special planned. Unfortunately, it falls between Thanksgiving and Mishael’s birthday (3 days later) so it is hard to celebrate so many things in a row. Isaiah has his many moments of not feeling well, but we are able to manage them and help him get through them. His next clinic appointment is in a few weeks and we are very anxious to see if stopping the steroids has had any impact on his growth.

My mother is recuperating well from her automobile accident. She started physical therapy recently and she says that it is helping her tremendously! Her spirits are good and her faith is strong. Praise God for His healing of my mom. Now we just have to find her a good vehicle so that she can get around.

We wish you all Warmest Season Greetings. May your New Year be filled with blessings, joy and good health
Thank you for thinking of us and for your continued prayers. We appreciate them very, very much. Please let us know you stopped by!!

God Bless and keep you.
Pat, Sal, Mishael and Isaiah

Tuesday, November 7, 2006 8:02 AM CST

1443 days post transplant

Our whirlwind trip to North Carolina for Isaiah’s check-up flew by too fast!

We landed in Durham to beautiful North Carolina sunshine. After so many days of rain and cloudy skies here at home, it sure lifted our spirits.

The kids were so excited about everything. We spent most of Monday at the clinic where Isaiah had his usual echo, x-rays, pulmonary test. In the clinic lobby, they had food, games and candy. There were lots of people and it was very festive –a nice time to visit. The boys really enjoyed that.

Tuesday is always the BIG (& very long clinic) day at the hospital. We first met with the endocrinologist and prepared for a long day of hormone testing. That went well. Later that afternoon we had our meeting with Dr. Kurtzberg. Labs were all good and the results of the various tests from the day before were fine. The explanation of Isaiah’s aches, pains, nausea still eludes us. He has had numerous tests in the past 2-3 months and they have not shed any light on why the symptoms. The wonderful news was that Dr. K has finally decided that it is time to wean the steroid –prednisone. This is very exciting! We have to watch carefully for side effects such as skin rash flare-ups and other symptoms and just try to get through it without starting the prednisone back up. It has been almost a week now and so far, things have been under control.

The next piece of good news is that the endocrine Dr. called to tell us the results of the growth hormone testing. We have been expecting all along that the conversation would be –when do we start the growth hormone, how do we do it etc. Well, Dr. said that Isaiah's growth hormones were at normal levels! In fact, he said we could not have asked for better results!!! I was thrilled and of course so was Isaiah once he heard the news! I could hardly believe my ears! If all goes well, we should see some growth in the next 4-6 months. (This is because we stopped the prednisone. The thinking is that this is what slowed his growth down to 50% of normal). Praise the Lord for these blessings and this miracle.

The rest of our trip just whipped by. We were loaded down with candy by the time we left. We managed only a few visits while at Duke. We met a sweet little boy (Noah –see link below) and his mom. It was a brief visit on our way to the airport but I’m so glad we were able to meet. Please keep them in your prayers as they head to transplant. Sweet baby Donovan was released after his 2nd transplant and we managed to visit a bit while in clinic. We pray for a smooth recovery for him.

The boys were really sad their last evening in Durham. Both of them wished we could stay longer and get a chance to visit some of our old friends whom we could not see this time. If I could have changed the reservations for an extra day or so, I would have done it.

We took off back into that beautiful blue sky to continue our journey. At home,our next adventure is starting home schooling which will be a challenge for me –but both Mishael and Isaiah are looking forward to it.

In the meantime, please stop by the following websites if you would like to drop them a note of encouragement or add them to your prayers. Morgan, Zoë, and their families could REALLY use a note of encouragement and/or prayers at this time. Things are very tough.

Noah’s website

Fefe’s website

Morgan’s website

Blake’s Page

Zoë’s Page

Thank you for thinking of us and for your continued prayers. We appreciate them very, very much.

Please let us know you stopped by!!
God Bless and keep you.
Pat, Sal, Mishael and Isaiah

Saturday, October 28, 2006 4:08 PM CDT

6 years ago and 4 years ago today

Michigan fall weather is so beautiful with all the colors but this year September and October have been so rainy and cloudy. The colors were quick to change. We don’t think about it much and no one has mentioned it today but it is 6 years from the day that Isaiah was taken to emergency and the diagnosis was made. It is also 4 years since we pulled out of our driveway as we headed on our “adventure” down to North Carolina for transplant (that’s what we had to call it when we told the kids about going to Duke).

We’ve had a very busy couple months. The kids have gotten back into violin , trombone and piano. They are also back to bowling on a league with their little buddy Jason after having taken a year off. They always forward to bowling and they enjoy it so much.

Isaiah has started feeling a little better. After all kinds of tests we have not found any reasons for his cramps and the myriad of aches and pains that he has been experiencing. Instead, we have decided to just continue to treat with Tylenol, Ibuprophen and Zofran as needed. It has helped with the symptoms but he has missed an awful lot of school (although less recently). About three weeks ago, he fractured his finger and we were quite anxious because we don’t; want it to derail a budding violinist and pianist’s career!

Another big step we have taken is that we have decided to home school the boys. There are many reasons for this and I have to admit it is the last think on my mind when the school year started out. Mornings are still rough for Isaiah and he has difficulty getting himself together. This is compounded by the fact that Mishael wants to be on school on time and mornings are quite the rush. We will see how it goes. We really need to continue to pray about this and proceed confidently with the plan. I have wondered if I will ever use the experience gained by completing my course work (minus student teaching & the Praxis test) to teach Spanish in high school –perhaps some of it will come in handy!

Other than dealing with life and the issues it brings --it has been about 3 weeks since my mother was in a serious car accident. Her car was totaled and her ankle has a break in it but she is healing well despite some continuous severe pains in her neck and back. Unfortunately, I am so tied to Isaiah and picking him up at school if he is feeling bad that I can’t leave home for too long and can not visit as often as I would like. Sal works about an hour away in a completely opposite direction so that makes it difficult as well.

Tomorrow morning bright and early (5:30 a.m.) we will leave for Duke. Isaiah ‘s 4 year post transplant check up is a little earlier this year, but we needed to get started on the growth hormone testing soon. The boys are very very excited to go. Mishael will be coming with us and as he has not been back for 2 ½ years he can’t wait to go back and visit.

We will update shortly after we come back.
Thank you for thinking of us and for your continued prayers. We appreciate them very, very much.

Please let us know you stopped by!!
God Bless and keep you.
Pat, Sal, Mishael and Isaiah

Thursday, September 21, 2006 10:01 PM CDT

1395 days post transplant

From summer to fall…
I have not updated recently as it has been quite a rough month for us –especially for Isaiah. I had hoped that by now we would have gotten some answers but we still have not figured out why he is constantly feeling so bad.

First I wanted mention that Sal’s sister Cindy and her family came to visit in August (as planned) and we went off to Cedar Point for a theme park adventure. The weather was perfect, the rides thrilling and Isaiah managed to squeak through on the 54” rides. He is barely 53”! But, that is another story in itself! The kids had a great time with their cousins Andy and Nicole. It is unfortunate that they live so far away. The kids are already planning to go together to Cedar Point next year!

Some of you may remember that we have had many wonderful times at theme parks ever since Isaiah discovered them on his wish trip in 2001 and we discovered that he is an absolute thrill seeker. Roller coasters sure took his mind off his treatment and recovery many times. He still loves them.

On the medical front things are not going so well. We managed to wean prednisone again about a month ago. Unfortunately, about the day before Isaiah started feeling bad. It was not unusual for him to feel this way but it has gone on for about a month where he has felt really crummy most of the time with a list of symptoms that would fill the page. We tried a steroid boost (which had no effect at all). We finally went in for blood tests last week (2 times) as it high time to start checking on specific things. I have to admit that when I went in to get the lab results that first time --I did hold my breath as I scrolled through them. I had been very worried. Most everything was in range, so that took some of the worry off my mind. We have not yet been able to figure out where the aches, pains, nausea, and headaches are coming from and why they seem to be particularly bad in the morning and evening. What is causing all these symptoms? He has missed so much school already –almost 50 f the school days thus far. Once again, the discomfort seems to be affecting his emotional state too. This is really tough sometimes. How could it not when he feels so bad so frequently.

Tomorrow 9/22 is Isaiah’s birthday (and his dad’s too!). Did I even mention that his chromosomal translocation is also 9:22 (and in all the literature has a “poor prognosis”)? We pray that transplant takes care of that forever!!! Thank God that he is almost 4 years post transplant!
We will go in for more tests tomorrow and Dr. appointment –nice way to celebrate a birthday –huh? Perhaps these more in depth test will shed some light on the situation. We are already planning our next trip to Duke –that will take place next month. Seems like were just there! Where did the time go?

Here are a few websites of children that share Isaiah’s diagnosis. All are in different places in this difficult journey. Blake and Fefe are recovering from transplant. Noah is recently diagnosed and in treatment. Zoë could use some prayers. Jared is recovering from serious surgery. If you would like to check in on them or pray for them –please check the links.
Noah’s website

Fefe’s website

Jared’s website

Blake’s Page

Zoë’s Page

I’m sorry that it has taken me so long to update. I just kept hoping for Isaiah to start feeling good again –or get some answers but we will have to wait a little longer.
Thank you for your continued prayers. We appreciate them very, very much.

Please let us know you stopped by!!
God Bless and keep you.
Pat, Sal, Mishael and Isaiah

Wednesday, August 2, 2006 9:23 AM CDT

1345 days post transplant

Summer is flying by fast and it is already August –school is going to begin at the end of the month! Already!
The past few weeks have been filled with activity with some down time in between. The highlight in July was that Isaiah’s transplant friend Alex and his mom came (all the way from California!) to visit us for a few days. I was hoping that at least the weather would be decent as neither Alex nor Isaiah like very warm weather and sometimes find it difficult to be outside. Fortunately, it was decent –certainly not like it has been the past few days here –like an oven with some major power outages. We fit in some mini golf and bowling –which was the big hit. Even Jill and I joined in! We sure appreciate them coming to visit and hope to visit them in California soon!

On the medical front things are going pretty well. We managed to wean prednisone very slightly and will try another wean in about 3 weeks. We hope that by the fall Isaiah will be off steroids and then can continue weaning some of the other meds too. We are planning one med increase when we wean the steroids and that will probably be hydrocortisone (due to adrenal insufficiency). He is not producing enough cortisol and that is one that takes a long time to get back to normal. There are many times where Isaiah doesn’t feel well and we can’t pin-point why. The rashes need to be kept under control constantly and his skin condition is rather good if we apply the topical creams when it flares up.

Isaiah has been at Special Days Cancer camp this week and the weather has been unbelievably hot. I constantly worry about all the kids there but I know that the staff is so competent (this camp has been doing this over 25 years!) and that if he can’t take the heat (especially at night –we’re only a phone call away).
Next week we have some company coming from St. Louis. Sal’s sister and her family will be here for a few days and we are so looking forward to the visit.

We hope you all are having a blessed summer.
Here are a few websites of children that share Isaiah’s diagnosis. All are in different places in this difficult journey. Blake and Fefe are in the early stages of recovering from transplant. Noah is recently diagnosed. Zoë could really some prayers right now. Jared is recovering from serious surgery. If you would like to check in on them or pray for them –please check the links.

Noah’s website

Fefe’s website

Jared’s website

Blake’s Page

Zoë’s Page

We have a lot of new pictures to share. I have to rope Sal in and ask him to put them up. I wish I knew how to do a collage or something more interesting. Sigh…I guess it’s time for me to learn how to do it!!!

Thank you for your continued prayers. We appreciate them very, very much.

Please let us know you stopped by!!
God Bless and keep you.
Pat, Sal, Mishael and Isaiah

Wednesday, June 21, 2006 2:26 PM CDT

1303 days post transplant (please check back in a few days for new pictures!)

We are back from Duke and Isaiah came back from Victory Junction Camp. It has been quite an adventure for all of us this past month.
Our journey to Duke took us first to Cleveland where we picked up our friend Mary Jane, my roommate from college (–who insisted on driving with us to NC) and we got on our way. It was a beautiful drive through the hills and mountains and a spectacular view everywhere. It was great having someone help with the driving –while I enjoyed the beautiful scenery (most of the way)!
We arrived in North Carolina and this time stayed with Isaiah’s Best Buddy (from transplant days) Carrie and her husband (and of course their 2 cute dogs). We had a wonderful stay with them and really appreciate their hospitality so much! Thanks so much Carrie and Mike!
Medically speaking, this is the latest. Dr. Kurtzberg is pleased with Isaiah’s progress and we will be starting a serious wean of medicines –did I really say that?!? Yes, finally a “real wean” of three meds –even though it is a slow one, we will take it! One piece of good news is that a hip X-ray showed no sign of AVN. (Avascular Necrosis is a condition characterized by cell death in bones caused by a compromised blood supply to the bone. Advanced cases show bone collapse in the affected joint. AVN can be caused by high-dose steroids and radiation treatment.). This is good but that doesn’t mean that it can’t and won’t develop and an MRI is the most sensitive test for AVN; x-rays might not show AVN until it has progressed to the point of bone collapse.
We still have not found the cause for the aches and pains that Isaiah had early this year but we are glad that they have not occurred in the last couple of months and that AVN is not obvious at this time.
As far as Isaiah’s growth, he has fallen another notch on the growth chart so we will now need to seriously consider growth hormones and plan to see the endocrinologist again in the fall to due some serious hormone testing to see what the course of treatment will be. We will have this done at Duke when we go down for out 4-year check up.
Tuesday was a very good day. We ended the day by getting together for dinner with some transplant friends and we had a wonderful time celebrating life together
Wednesday was another good day until I spoke to Sal that evening. Life has its way of turning upside down in a second. I will never get used to that and it has happened with us many times. I was devastated and shocked to learn that that afternoon my father in law suddenly passed away. It was just over a year ago that Sal’s mother passed away the day that I was coming home from NC and now this. Mishael and Sal pulled themselves together and headed for St. Louis the next morning so that they could attend the memorial service. Sal insisted that Isaiah and I stay in NC. As difficult as this was, it was the best. We miss Grandpa very much and we so looked forward to his visit that he planned for July 4th.

We stayed a few additional days in Durham and all the plans of visiting some friends fizzled, as I was very sad.
The day arrived for Isaiah to go to camp. He has been so excited for weeks! We headed to the airport to pick Mary Jane up before going to camp. On the way, Isaiah discovered a tick on his scalp. That was not fun. This created some additional slight complications but that’s another story. We picked Mary Jane up in Greensboro. She was going to ride back tio Cleveland with me (it was such a blessing) and we dropped Isaiah of at Victory Junction Camp. Once we saw that Isaiah was ready to “get on with the show”—we decided it was time to head home. I have to admit that I was a little worried that he would be so far away for the rest for the week.
The week went by quickly and Isaiah came back home on an Angel Flight with his favorite pilot Dick. He was wearing a new favorite PINK Victory Junction Camp shirt. (“Real men wear pink,” he told me). He had a grand time at camp and is already planning to go back. Yeah, right.
We are now all at church camp meeting for 9 days –except for Sal who had to go home to St. Louis to take care of family matters. The boys have been having a wonderful time at camp. Isaiah has his bouts of not feeling well and we figured that he is depleting all of his cortisol so with Dr. K’s OK we are increasing his hydrocortisone (at least during camp) to see if that helps him feel better. We sure hope so as he has been crashing at night and feeling horrible. Always something.

Well this is a lot longer than I anticipated. Thank you for continuing to check up on us. For our prayer warriors here are a few sites of children that need prayers. I’m sorry I have neglected to put links on our site lately. All of these children share the same diagnosis with Isaiah.

Jared’s website

Blake’s Page

Zoe’s Page

Thank you for your continued prayers. We appreciate them very, very much.

Please let us know you stopped by!
God Bless and keep you.
Pat, Sal, Mishael and Isaiah

Saturday, May 27, 2006 6:15 PM CDT

1279 days post transplant

It’s high time to update again! We have been busy with school, music lessons and activities. Isaiah has been able to attend school more regularly this last semester. The aches and pains that kept him close to home have subsided and are not nearly as frequent. We never did figure out the cause. However, the fact that he struggled so much this winter has “guaranteed” us a trip to Duke for a check-up and we are going to leave tomorrow.

The last couple months have been such a blur. For the most part Isaiah has been feeling pretty well except for the continuing nausea that seems to appear out of nowhere. His energy has been quite good even though Dr. K. weaned his hydrocortisone and it is naturally so low anyway. Fortunately, this did not affect his activity level and he continued to have good energy (when he was feeling decent). He did manage to fall on his handlebars on his bike on one occasion and split his lip quite badly. It healed well and an emergency room visit was narrowly avoided. He tried to enjoy school and really worked hard to get all his back work in and raise his grades. His last semester he managed all A’s! We have not seen any major after effects (neurologically) from the so much radiation so these grades reflect that he is still able to focus and keep up with his work. Praise God for this victory.

Mishael has kept busy at school with lots of homework and continues to play the trombone in the band and also has tried his hand at the marimba! He is looking forward to the end of the school year and the numerous camps that we have scheduled. He wanted to badly to have a vegetable garden this year but we ere not able to get it in yet and it is a bit too late so we will have to plan a little better for next year.

So…Isaiah and I are leaving for duke tomorrow. We will have the usual tests and of course the infamous Tuesday clinic visit with Dr. K. We hope to get some meds weaned although the skin GvH still plagues Isaiah. It is usually well under control but we must keep an eye on it. Last week, somehow, we missed a few days of creams and the skin flare was very bad. In fact, the itching drove him crazy and I even had to take him for a ride in the car in the middle of the night to try to get him to sleep because it was so bad. It didn’t help him to fall asleep but he eventually did and by morning, it was much better –of course with the help of extra steroids, creams, and sulpha cream (used for burn victims).

We will be at Duke until the following Sunday when Isaiah will go to Victory Junction Camp (NASCAR Camp!!) in Randleman, N.C. This is a very big deal for Isaiah and he can hardly wait. I will leave him in NC and return home and then Isaiah will take an Angel Flight home when camp is over. Am I apprehensive? Yes I am. It will be a long week with him away at camp and so far away! It is a dream come true for him as he has wanted to go ever since the camp opened a few years ago.

Other than the numerous camps this summer the other highlight will be seeing Isaiah’s transplant buddy, Alex. He and his mom are coming midsummer (all the way from California) and we just can’t wait to see them!

That's about all for the moment. I will update when I get back from North Carolina with the latest medical news!

Thank you for your continued prayers. We appreciate them very, very much.

Please let us know you stopped by!
God Bless and keep you.
Pat, Sal, Mishael and Isaiah

Wednesday, March 22, 2006 6:15 AM CST

1212 days post transplant
Things have started to go a little better this past month. Isaiah has had some better days and after missing about 3 out of 5 school days every week (and being late the other days) due to aches and pains. He has had 2 weeks of good attendance.

We’ve been hoping for some answers to the pains that Isaiah has experienced in the last 2.5 months but we are no closer to finding out the reasons for the symptoms. Isaiah had a clinic appointment 2 weeks ago and labs were within his normal range and IVIG numbers have gone up significantly. In fact, they are close to low normal! This is wonderful news for us. It means his natural protection is kicking in despite the immunosuppressant drugs he is still on!

Since Isaiah had been feeling bad lately, Dr. K raised his prednisone a bit. Even though it was a small increase, it caused an increase in appetite, and big cheeks (which irritate Isaiah so much!). We hope to start the prednisone wean again soon. We did manage to stop Cellcept –cold (YIKES!!!). I was very nervous about suddenly stopping the med, but, Dr. K. responded quickly to my question of Isaiah’s constant and intense nausea (and my hunch that it was caused by Cellcept) by stopping it all together. We also cut out a mid-day dose of hydrocortisone. So, we are constantly looking to see if his skin is flaring up and taking care of it with topical ointment so that it does not get out of control. So far, so good! The nausea has decreased dramatically and Isaiah is not being awakened at night by nausea. We just wish the painful cramps would go away.

It seems that we are all busy, busy, busy. Sal has resigned his position with EDS after 21 years to try something new and we all hope that the reduction in hours (from 60+ all hours of the night and day) will help us regain some sense of family normalcy. I am finishing my last class at U of Michigan for my teaching certificate. Of course, student teaching follows, as do the 2 state exams before I will be certified (and who knows when that will happen!). Oh yes, speaking of U of M –Sal now works for University of Michigan Medical Systems and unfortunately (for me) no longer works from home. It is quite a commute, but he likes his new challenges and working in an office setting.

Mishael is still hoping for another snow storm so he can go sledding one last time –we just didn’t have the usual amount of snow this year and even though spring is here, it is cold –so it might as well snow! The boy’s boots and snow pants have barely been used!

We are still wondering if we will have to go to Duke in May for a check-up. We hope not to have to go this time. Instead, we will look forward to going in November. That’s about all for now. Thank you for checking up on us.

Thank you for your continued prayers. We appreciate them very, very much.

Please let us know you stopped by!
God Bless and keep you.
Pat, Sal, Mishael and Isaiah

Friday, February 10, 2006 10:33 PM EST

1173 days post transplant

I didn’t realize that so much time had passed since our last update. January and now February have actually been a very bumpy ride.

I had mentioned in the last update that Isaiah had been experiencing some severe muscle cramps. Since they appeared a few days after school started up again and after some quite vigorous exercise during P.E. we hoped that they were related to this --especially after a particularly “in-active” Christmas break.

After 5 days of this and plenty of Ibuprophen, we went to the clinic for an unscheduled Dr. appointment. After a comprehensive exam by Dr. O., labs and numerous other tests the results came sifting in slowly and all was normal or negative (except for one test that takes 8 weeks to get the results back!!!) Anther whole month to wait!! But that is expected to be negative as well. There was really no explanation to what was happening. In addition Isaiah was experiencing more of the same nausea, dizziness and malaise that he has been experiencing for the last year. Dr. Kurtzberg decided that since he was low in cortisol we needed to raise either his hydrocortisone or Prednisone. Perhaps this would at least help him feel a little better. Instead of weaning meds (as we planned) we were raising them!! Going in the wrong direction but nothing we could do about it. For about 2 days Isaiah felt great. Then, the bone pain set in. Is that scary or what?! By now he had been out of school for 8 days. The pressure of missing school, being behind in homework, anticipating all the back-work, not feeling well, bone and muscle pain, boredom, can cause that “blue” feeling. I’m sure you get the picture. Sal and I are worried that we can’t figure out what is going on and this is getting old –worrying for over 5 years about one thing or another with few spans of time when we can exhale and relax.

Special Days Winter weekend camp was scheduled at the beginning of February. Isaiah and Mishael both went –although Isaiah wasn’t sure he could make it but we convinced him that we would pack him and ride up. If he wanted to come back home, he was free to come back with me. As expected, once we got up there, there was no thought about coming back home. He was there to stay! The boys had a wonderful time as expected –minus snow. They are already looking forward to Summer Special Days Camp. I always hope that by the next camp I will NOT need to check Isaiah in holding a SHOEBOX full of meds!

Unfortunately the week that followed --which was this last week was not much better than the last month. Isaiah was out of school most of the week except for the 1½ days that he tried to pull himself together to go --and tried very hard to make that ½ day turn into a full day –but he just could not. I contacted all of his doctors this past week to see if anyone could shed some light in this situation and on these issues. We are also talking to the psychologist to see if we could do some testing to see if the pains could potentially be caused by anxiety, or depression (which often children are not aware of). I don’t know how to explain it but hope we will know more within a short time.

Oh yes… I just want to share something Isaiah said to me last week (on a day that he was ill).
I was feeling pretty crummy that afternoon and could not go to pick up Mishael from school. I asked Sal if he could please go instead. Isaiah asked if I could play a game with him , and I told him that I just felt really sick could not do anything. He turned to me and without missing a beat said, “Now you know how I feel all the time”. What could I say to that? I was speechless…not one word to respond with.

Thank you for your continued prayers. We appreciate them very, very much.

Please let us know you stopped by!
God Bless and keep you.
Pat, Sal, Mishael and Isaiah

Friday, January 6, 2006 11:35 PM EST

1137 days post transplant (27,288 hours =1,637,280 minutes)

It’s high time to update. I planned on doing it right after returning from Duke in early December, but when we came home it seemed like we jumped on the “Holiday spinning wheel” and I just couldn’t get off long enough to update!

Our trip to Duke went well. We started out on a plane that took forever to be de-iced and we missed our connecting flight in Detroit, but we finally arrived in Raleigh in one piece with our luggage --and that was my main concern.

Our first main check-up was with the Endocrinologist. The Dr. told us that she is still waiting on some hormone levels but the blood work looked good and Isaiah’s x-rays show a bone age of 7-8 years. No action needs to be taken yet with any growth hormones because he has shown some growth (about 50%) of expected normal growth for his age –so I guess that’s good. We’ll check again in 6 or 12 months depending when we go to Duke next. The echo, pulmonary function tests and x-rays were all fine. We may have to go back to Duke in May but we won’t know until closer to that time.

Dr. Kurtzberg’s evaluation was that things are looking good. She’s not concerned about the bone age and says that that’s actually good because it shows that there is room to grow. It so happens that his skin GvHD had really flared up while we were there so I was really surprised when she suggested we start weaning of Neoral (cyclosporine) and then after a month if all looks good then we can wean the Cortef (cortisol). I have to mention that is has taken a month to get the liquid Neoral and we still have not started the weaning. But that’s another story and it gives me more gray hair when the mail order company starts messing with the meds! We still have so many meds to get off of.

We enjoyed our short stay at Duke and were able to see some old friends and spend a little time with them, but it was precious time. Pat and Carrie –thanks so much for coming out to meet with us. Mike and Carrie –thanks so much for dinner and a lovely visit together. We were able to spend some time with our friends the King’s whom we miss very much. Also had the chance to see sweet Baby Donovan (and his parents) who left the BMT unit a few days after we left. What a beautiful baby and doing so well post transplant! Had a wonderful visit in the hospital with Isaiah’s old teachers, Elaine and Marshall –oh so good to catch up with you!!

As I mentioned, we returned home with Christmas season in full swing. There was much to do; Concerts and Christmas programs to go to, a few presents to wrap, cards to get out, and cookies to bake. Isaiah also had to get 2 teeth prematurely pulled just before the Christmas break. That was not pleasant and I know quite painful as the roots were long. He has the adult teeth (buds) embedded sideways in his gums and we hope that by pulling them now they will straighten up and grow into the spaces that are now “toothless”.

We enjoyed a quiet Christmas Day at Nana’s house with uncle Vladan visiting too. The rest of the time was spent close to home. The snow had mostly melted by then –so we were disappointed not to be able to get any sledding or snow boarding in. Yeah –I was almost ready to try a little snow boarding myself! OK, maybe not.

And here we are –a new year and back to school and the routine. I will be taking my last class to finish up my course work at the University for my Teaching Certificate. I still have two more major obstacles before I will be completely done and they are student teaching and the Praxis tests in both French and Spanish. Yikes.

As I write this I just ask for continued prayers for Isaiah. He is experiencing some severe muscle cramps over the past few days. He asked me to email Dr. Kurtzberg yesterday –which I did. If it is still present after the weekend then we have to go to the clinic Monday for him to see his Doctors here. Things like this that pop up out of the blue are always worrisome.

Thank you for thinking of us and continuing to check up on us. Please don’t forget to sign our guest book! I apologize if the pictures we put up are too big –I am learning how to do this and we have a new program that we are trying to figure out –there must be an easier way!! Please let us know if it is taking too long for the pictures to load and we will see what we can do.

God Bless and keep you and we wish you a blessed 2006
Pat, Sal, Mishael and Isaiah

Saturday, November 26, 2005 6:11 PM CST

3 years post transplant - TODAY!

I hope that you all had a blessed Thanksgiving. Here, Thanksgiving and winter have arrived on the same day! Wow is it cold here! Today we even have 4 inches of snow. I wasn’t quite ready for that --yet.

The last month has been pretty uneventful. That is good. School, instruments and church have taken up much of the boys’ time (and our time as well). Mishael and Isaiah could hardly wait to spend Thanksgiving at my cousin Becky’s house. They just love to go there and play games --in fact we don’t hear a peep out of them all afternoon long. We all had a wonderful time and feel so blessed in many ways.

Today (as I mentioned above) is Isaiah’s 3-year transplant anniversary. Mishael’s birthday is in a few days on the 29th, and then, there’s Christmas just around the corner. With all these activities, I don’t have much time to get too sentimental about what this day really means. Today, Isaiah and I talked a bit about this anniversary and Isaiah reminded me that his transplant was at 11:51a.m. precisely, and that was that.

Isaiah had his check-up some weeks ago and all levels were normal or close to normal. IGG levels were tested again and 2 of 3 levels have crept up ever so slightly. Don’t know whether to compare it to a snail or a sloth --as both are awfully slow. The main thing is that we are holding off another infusion and will check it when we go to Duke for check-up in about 10 days! I will update when we get back.

Lastly, I wanted to share the following links. The Flint Journal has done a number of articles in the past 5 years that started with stories about bone marrow testing and drives (that we had in search of a donor for Isaiah) and then followed with articles about Isaiah’s Journey and his progress. The latest story was about the 5-year milestone of diagnosis and the 3-year post transplant anniversary. We were surprised to find it on the front page of Monday (11/15) Flint Journal. Perhaps they needed a “good-news” story to start the week off with. I smile every time I think of what he told the reporter about his career choice…

Here are links to the article and one of the pictures.

Flint Journal Article

Isaiah’s Picture

Thank you for thinking of us and checking in on us. Please don’t forget to sign our guest book!

Pat, Sal, Mishael and Isaiah

Tuesday, November 1, 2005 8:51 AM CST

Here it is --finally we have changed the pictures and even have an update!!

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This is always such a pretty time of the year here in Michigan. This year the fall season seems to have “stretched” as the many leaves are still on the trees and the colors are just peaking! It has been a mild and spectacular fall.

Nevertheless, it is a difficult time of the year it is 5 years from initial diagnosis and soon it will be three years from transplant. So the painful memories: although somewhat faded --still come back to remind us what a long journey this has been --and continues to be. It seems no matter how we try to get back to a new normal, it isn’t exactly what we envisioned it would be.

We returned from our vacation feeling quite refreshed but certainly not ready to get back into the routine --yet. It took awhile to adjust to school, and recover from a few days at Universal Studios and a few days (certainly not enough beach time in my opinion) at the beach. Despite the wavy water and the muck floating around we managed to enjoy a few hours of beach and sand. As the hurricanes hovered all around us I was reminded that I probably should not have planned this trip “at the peak of hurricane” season.

Isaiah is doing well although he continues not to feel well much of the time. Mornings and evenings are particularly difficult for him. I wonder if it could be a result of all the meds he is on. His skin continues to flare up every few days. It has a routine of its own. We thought that the Florida sun would aggravate it but it didn’t. Then when he came home and had not spent any time in the sun --it flared up quite a bit. His IGG levels are still very low and we are hoping they will start to rise soon. The good thing is that Dr. K is holding off on his IVIG (immunoglobulin) so we don’t have another horrible reaction to worry about. Thank God he is not coming down with every little sniffle or cough or we would have to give it to him no matter what.

We are preparing to go to Duke for Isaiah’s 3-year post transplant check-up next month. It will be the usual yearly mega testing, but this year we will have some hormone testing done as well. Isaiah has not shown much growth and we need to see what is going on with the growth plates.

As I write this Isaiah is at school outdoor camp up at Camp Au Sable (northern Michigan). I’m sure he is having a great time with his class and I hope he is feeling ok. We got a call from camp yesterday --of course my heart sank at first --but it turns out that Isaiah put his Monday meds in his pocket (so he could take them a little later) and lost them all! He was certainly not a “happy camper” and we were pretty upset. Well he missed his morning doses of many meds but fortunately he had enough from the end of the week to take the evening dose. I hope he learned his lesson. I know he must have felt bad about it all day. I told him to not worry about it, as I didn’t want him to miss out on the class work and other activities worrying about finding his meds. It’s always something…..

Thank you for thinking of us and checking in on us. Please don’t forget to sign our guest book!

Pat, Sal, Mishael and Isaiah

Sunday, September 18, 2005 10:37 AM CDT

Finally an update! Summer has flown by school has started and we are just now taking our summer vacation! We are doing OK. Isaiah has had some major skin problems the past few months and not feeling well very often. We are unable to pin-point why though as his labs have been normal. I wonder if it is from all the meds he is on??? But it has not stopped him from enjoying a few camps and even school (although he has already missed 3 1/2 days)!

I am actually updating from Florida! We are at Give Kids the World (as I write this) for the day. This is where we came for our wish trip 3 years ago and it really is a victory of sorts to come back! The kids could hardly wait to arrive this morning and are planning on staying the entire day --which will include lots of ice cream and swimming in their fantastic pool. The weather is hot and humid --perfect for swimming!

We will be in Florida for the week and will go to one park. We still have not decided which one. I will update after we get home and finally change our pictures! Isaiah has gained almost 10 lbs since it was taken! I'm glad I can't say the same!

Isaiah and Sal will celebrate their birthdays here (9/22) this coming week. Isaiah was so disappointed that he would not be home for his birthday (once he ralized that we would be here) but I hope that we can make up for it this week!

Thank you for checking in on us and keeping us in your prayers.
Love, Pat, Sal, Mishael and Isaiah

Wednesday, July 13, 2005 9:23 PM CDT

It is high time for another update!

It’s hard to believe that we’re already in the middle of summer vacation and that school will be starting next month!

We spent a wonderful 9 days at church camp meeting last month. It was all we had hoped it would be and more. The boys had a wonderful time with the programs that were prepared for their age group and Sal and I didn’t see much of them except at meal time and bedtime. We were certainly spiritually fed and emotionally recharged. Isaiah had quite a bit of energy and we all walked a lot. My main worry was Isaiah getting too much sun --which he did one afternoon and we held our breath to see if it would aggravate his skin condition. It did. Not too bad, but enough to get all the topical creams out en force as well as a little help from Benedryl so that it would not get out of control. After that uncomfortable episode, he was better at letting us put the sunscreen on.

Not long after we arrived home from camp, Grandpa arrived from St. Louis. It was a difficult journey for him as this was the first time he made the trip without Sal’s mom (who passed away barely 2 months ago). We really missed Grandma but we were able to have a really nice time with Grandpa and enjoyed the 4th and 5th of July visiting with cousins on both my side and Sal’s side of the family. It was a wonderful time spent together. We were sorry to see Grandpa leave and hope he comes to visit again soon.

The lazy days of summer are here but they have been filled with golf, a police 911 camp, clinic visit and bee stings! Yes, and who would get the stings? Isaiah -- of course!! It was very painful as brave as he tried to be --- and, when it was all over we counted at least three stings. We were grateful that he was not allergic to them because we would have been in real trouble and I would have to think what might have happened. Now that I think about it I wonder if one is not allergic pre-transplant can you develop an allergy post transplant? Can the new “donor marrow” cause you to be allergic? Anyhow he recovered from that in time to get ready for a 5-day church camp where he could choose a specialty for the week. Mishael chose small engines (which was no surprise). Last year it was Lego Robotics. Isaiah chose “high adventure” --as if he hasn’t’ had enough of that in his short life! Since this was his first non-cancer camp (without his parents), it took me a good 1½ hours to go through his med schedule with the nurse. I’m sure she hasn’t had a challenge like this in a longtime!!! She was so patient and kind and at the end assured me that they would do everything they could to make sure he has a fun time. One thing that may make the camp experience even better is that after 5 years he will be allowed to swim in the lake!!! Yay! I explained to Dr. K that this is a clean, spring fed lake with no other houses around it and hopefully very few birds to pollute it!!! So, she approved this lake for swimming but I must admit that these days I always worry about the bacterium that is in lakes --even this one!

Another piece of great news is that we were able to put off giving Isaiah his infusion of imunoglobulin/IVIG ( --the one that causes those horrible reactions) because his IGG levels (the things that determine if he needs it) have crept up ever so slightly. Dr. said she was encouraged that 2 of the 3 levels went up and we hope that the last level will go up by next month. We were ecstatic. As helpful as these infusions are for his immunity and keeping him healthy, the discomfort and headache pain it can cause is significant. Not to mention that it “steals” at least 7-10 days because he feels to bad during and especially afterwards.

Speaking of feeling bad…. Isaiah still feels very bad at times and we still don’t know what is bringing it on. But, I will end on a positive note. Isaiah has gained 3 more pounds and seems to have grown about ½ and inch! This is really significant!

Thank you for thinking of us and checking in on us --and signing our guest book! It is very much appreciated!
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Alas it is again with much sadness that I share that the following precious children have passed since my last update.

Ryan’s Website
Justin’s Page

Also, our friend from Duke who is having some issues again --Cody’s Journey

The following children all share the same (rare) diagnosis with Isaiah. All of them are at different points in their journey. Please keep them in your prayers.

Jared’s website

Parker’s Page

Zoe’s Page

Wednesday, June 15, 2005 11:32 AM CDT

932 days post transplant!!

Such a long stretch since my last update...

It has been a very busy month. There were many school activities to go to during the day and in the evenings --and that keeps us hopping. Sal went on a rare business trip to San Francisco for a week so we were on our own. That took a bit of an adjustment. But it was a trip that was very good for Sal and he needed a change of scenery. Too bad that he didn't even get a chance to see the Golden Gate Bridge! Also, Sal went home during the month to spend a few days with his Dad and family. It provided some closure after his Mom’s passing but it was very difficult to go home (to St. Louis) now that his mom is no longer with us. (A big thanks to cousin Kelly and her family for offering that Sal ride with them home and back). That was a real blessing for us and much appreciated.

The boys are out of school and looking forward to the camps coming up. Isaiah has not been felling too well lately. In fact the entire month has been difficult. We don’t know if it was a virus or internal GvH but he had constant nausea and weakness for about 3 weeks. He has missed a lot of school since January. It is amazing that he has been able to keep up. We were on the verge of upping one of his meds again and had those same feelings continued for a few more days we would have done that. He has had another skin outbreak that is very stubborn and not going away. Could it be a GvH reaction from the sun now that the weather had gotten warmer?

We had our monthly clinic visit last week. The timing was good as it was right in the middle of Isaiah’s not feeling well at all. I have to admit that after a few difficult nights there were many “dark thoughts” that raced through my head. I was very relieved that his counts and labs were normal. In fact, his hemoglobin is the highest I remember since ---well, in many years. The not so good news is that it appears that the immunization that Isaiah got last month to try to boost his immune system does not appear to have worked, his IGG levels have again fallen. If this downward trend conitues, then he will have to have another (dreaded) IVIG infusion. For those of you who pray --please pray that his levels go up. I really worry about all the reactions and the potential damage that may be doing to his body.

So we continue to take things day-by-day. We are so grateful for so many things but I admit that I thought that post transplant recovery would not take this long. Of course there are many “normal days” but other days where there is worry.

We are heading to family church camp for 9 whole days!! Everyone is going and my mom will be up there as well. We are looking forward to some physical rest and some spiritual renewal. The weather is expected to be pleasant and mostly sunny. This will help make it more enjoyable. Last year the boys and I managed to go for only a few days and despite the very cool weather we wanted to stay longer but could not stay.

Thank you for thinking of us and checking in on us --and signing our guest book! It is very much appreciated!
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For you prayer warriors, if you would, PLEASE pray for Ryan who is battling neuroblastoma and REALLY needs our prayers now.

Ryan’s Website

Also, our friend from Duke who is having some issues again --Cody’s Journey

The following children all share the same (rare) diagnosis with Isaiah. All of them are at different points in their journey. Please keep them in your prayers.

Jared’s website

Parker’s Page

Justin’s Page

Zoe’s Page

Wednesday, May 11, 2005 7:31 PM CDT

As I begin this update I first would like to thank all of our family and friends for their prayers for my mother in law Rose. It is with deep sorrow that I write that she passed away early on Mother’s Day.
She will be missed very much and our visits to Edwardsville, Illinois to visit Sal’s family will never be the same. I just cannot believe she is gone.
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Isaiah and I returned from our visit to Duke on Mother’s Day in the evening. We spent nearly a week in North Carolina. It was a wonderful visit and we had a chance to rest and visit with our friends a bit more than usual ---but of course there is never enough time to visit with everyone we would like to see. We relished our time spend with the Kings. They pampered us and took care of us as their children and we are very grateful. In fact, Isaiah wanted to stay longer with the Kings…until November! He had quite a plan in place…

On the Medical Front. Our visit with Dr. K was great. She was pleased with Isaiah’s progress and also happy that he has put on a few pounds (I think due to his steroids). We are happy to report that one of his doses of immunosuppressant meds has been dropped!! Yay!! --the weaning has started! OK --so I admit I had hoped that we would wean the prednisone or something else, but Dr. felt that we needed to go slow. We’ll see how Isaiah’s skin does with this reduction and take it from there. Also, he got an immunization to see if this would help his IGG levels (which are connected to his frequent need for the IVIG infusions to boost his immune system). If this works (and I can’t even begin to explain how) then we may be able to skip the IVIG --oh that would be so good!!!!

Isaiah and I were able to visit with some old friends ---Pat and Carrie, Connie and Mike. So good to see you all. --Pat thanks for the game you gave Isaiah. He couldn’t wait to try it at home. Carrie (Isaiah’s best buddy at Duke) --thanks for a wonderful dinner and loads of bowling fun. Speaking of bowling, Isaiah was able to go 3 times --that was right up his “alley” and he had a great time. He even got a chance to bowl with a senior group and won the pot!!! He thoroughly enjoyed bowling and interacting with this nice group.

It was so nice to get a chance to meet Parker and his family (whose link is on our site) and see how well he is doing after his transplant. He looks great. Wish we could have visited a bit longer…Kerri, Brian and Spencer --We had a little time to visit but will make it up next time around with a little better planning. Spencer looks is doing so well too --and really is such a cutie!! (Don’t tell him that!)

One of the reasons we stayed at Duke longer than usual is to be able to attend the Rainbow of Heroes Walk. Isaiah felt a very strong need (want??) to attend. It was a spectacular day for the event. Of course it is a very emotional time as well. The release of the balloons in memoriam is certainly a high point that really chokes every one up. No exception this time.

We ran into some old friends and made some new friends. One of the families who was on ABC Extreme Home makeover was there. It was great to finally meet the Sears family --Karen it was a blessing to talk with you. We wish Jhyrve continued recovery. Shawn --it was wonderful to see you. Congratulations on your marriage! We really missed our transplant buddies Alex and Sean --it just wasn’t the same without you. Isaiah and I didn’t even go to Toscas --but instead we will wait until next time so we can all go and have some of that great pasta with YOU!

And finally, another big event that happened today. We went to the dentist! Yes indeed. We were “kinda” forced to go due to a tooth growing fast behind a baby tooth and it needed to be extracted. After a massive dose of antibiotics (which stunned our dentist) it was extracted. Some of you know that going to the dentist on immunosuppressants is not recommended but we had been wondering about the condition of Isaiah’s teeth and those that were forming in the gums. The good news is that he has no cavities (although there is wear and tear on his baby teeth ---chemo and rinses have not been kind). The other thing we found is that his cuspeds are very slanted in the gums and we will need to wait and see if they will ever make an appearance. We will have to see an orthodontist to come up with a plan to solve this one in the next few years. Our dentist did not think this was a result of any of the treatment Isaiah has had.

So that is what has been happening in our neck of the woods! Whew, it makes me tired just reading this journal entry!

Thank you for thinking of us and checking in on us --and signing our guest book! It is very much appreciated!
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Sunday, April 24, 2005 9:28 PM CDT

Day 880 post transplant

Who would have thought that after some unusual 80-degree weather we would wake up to snow today and as I sit here and look outside there is about 6-7 inches that have fallen. Unbelievable.

At the Bingham household it has been one thing after another -the usual business of life. We spent all last week looking for a clothes washer after our 5-year-old super model sprung an oil leak and ruined lots of clothes. Also, in addition to the sludge that appeared on the basement floor recently, and the need to dig up the front yard to fix a drain pipe that is misaligned, the toilet that is not longer working and the bathroom that needs a “slight” remodel, the washer is an additional expense that we didn’t need. But, we thank the Lord for our blessings --and a new washer.

Bowling season is done. It went down to the wire --I mean to the very last nail-biting frame --yes the 10th frame and then to the very last roll of the ball. Jason, (Mishael and Isaiah’s 7-year-old teammate) didn’t choke but pulled the team out of the possibility of 2nd place and they won by 9 points!!! As much as we concentrated on just having fun bowling and not the importance of being first --it was nice to see them win as they worked very hard all season.

Last Wednesday we went to the clinic for the dreaded IVIG. Isaiah was premedicated with steroids (and other meds) pre IVIG and post IVIG to help counteract the horrible side effects experienced from the IVIG. We even tried a different brand again. This time, instead of the reaction coming a day or two later, it started the evening of IVIG and has lasted for days…he still doesn’t feel well at all. Isaiah claims this one is the worst reaction he’s had. He even said that he feels as sick as “when he was 5” meaning before diagnosis. “But”, he assured me and added emphatically, “I know it is not back. I’m sure it isn’t back” --meaning of course, the leukemia. Wow -that's a pretty heavy comparison. To me the prior 4 reactions seemed worse but he says this time it is constant pain and nausea and it is awful. The steroids have also given him the steroid look and the big tummy --already! I didn't think about that side effect! I was quickly reminded that you become a short order "chef" very fast! The mega steroids caused a mega appetite!

Regarding Isaiah not feeling well for weeks on end and just that “BLAH” feeling that we could not pin point --we found out that his Cortisol level (which is the major adrenal glucocorticod [hormone] which stimulates conversion of proteins and carbohydrates, raises blood sugar levels and promotes glycogen storage in the liver) is very low. This surprised me as it was normal (albeit on the lower side) last November at his 2-year check-up at Duke. Well……Dr. K seemed glad to find the cause of the fatigue and weakness he had been experiencing and she had suggested checking his thyroid (which is O.K.) and his cortisol level first. We were glad to that it didn’t take long to figure it out but disappointed that he had to start on hydrocortisone (Cortef) meds for at least a year. When Isaiah and I head to Duke next week we will find out more.

And, another update on both Sal’s mom and my mom. Sal’s mom is still in a lot of pain but she now is using a patch for pain and this seems to be helping. She is in a wheelchair and cannot walk at the moment. We are praying that this is temporary and that she will get better. My mom’s torn rotator cuff is not getting better with physical therapy and it appears that surgery may be needed.

And praise God that our good friend Bob who was recently hit by a car while walking on the sidewalk is home and recovering well.

Thank you for thinking of us and checking in on us --and signing our guest book! It is very much appreciated!
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Monday, April 11, 2005 2:25 PM EDT

The boys are enjoying some really nice spring weather here in our neck of the woods. They have been taking advantage by playing outside a lot. Many things are late in blooming due to the cold weather we’ve had for so long but I appreciate that the cheerful daffodils have finally appeared.

School had been going quite well for the boys. Isaiah has been absent quite a few times as he has not been feeling at 100 It’s nothing we can pinpoint. Just a “blah” feeling (as he calls it). Also, he often feels fatigued. His skin is still dry and he has a GvH rash that flares up but not as frequently as before. Last week Isaiah had his clinic appointment and all went well. Labs looked good. We were however disappointed that his IGG levels are low again (which isn’t a surprise) and he will have to have another infusion. We are going to try yet another brand in hopes that he doens’t have a severe reaction (like the previous 4 times!!!). We are planning to have it soon --before we go to Duke. His cut above his eye has healed well and the scar is not as noticeable.

Mishael is enjoying his trombone and progressing well. He is on safety patrol again at school and just loves it. The bowling season is nearing the end (YES! I say!!). I am looking for a change of pace. The boys have started taking tennis lessons again and they are enjoying that. Of course the up side to this is that it not only gives THEM a chance to exercise but that it also forces me to take them to the gym and work out. Last week Sal and I went with them and we had a good work out --but we have to be more consistent!!!

And, finally an update on both Sal’s mom and my mom. Sal’s mom in addition to recovering from radiation for her brain cancer had a bladder infection (and surgery) and is now in a lot of pain. We are not quite sure that the situation is and the reason for the intense pain. We hope to find out soon. My mother is going through therapy for a torn rotator cuff (in her shoulder). She is very diligent in her physical therapy trying to avoid surgery if at all possible. The excruciating pain is not as constant any more but the road is long to healing.

I also have a praise report. Our good friend Bob was hit by a car while walking on the sidewalk and crossing a driveway. He suffered a lot of internal bleeding, a ruptured spleen (that was taken out probably in the nick of time) and fractured bones in his face. But Praise God he is recovering well and may be able to come home soon.

Thursday, March 17, 2005 5:40PM EST

847 days post transplant !

Well, the Bingham household has recovered from the illnesses that have circulated through the family, but Mishael is starting to cough again.

Isaiah had his monthly clinic visit last week. Everything looked good as far as labs are concerned. That is always a relief --especially after such a rough month. The clinic visits are only once a month and Isaiah loves to go to the clinic to see everyone there. For me the visit provides “peace of mind” as I only exhale (completely) once I see the blood work results.

It seems that there is never a dull moment. Mishael came to the clinic with us this time and the boys were playing basketball in the hallway. For some reason they so looked forward to their game. Sure --it’s only a Fisher Price plastic basketball game - but they really got into it. The boys were playing while I was finishing up with the Drs and I heard a cry --I finished my sentence by saying, “someone got hurt --and badly”. We saw Isaiah coming down the hallway and blood was dripping into his hand from his forehead. Oh great. After it finally stopped bleeding, Dr. O took a look at it and said that it needed stitches. Of all the places to go that afternoon that was not one that was in my plan! So, we went straight to emergency where upon seeing us the PA said “Oh, that’s going to be a scar”. Not another one I though to myself and on his face! Everything that was happening seemed so “amplified”. I didn’t take this all so lightly. We went through the same routine in emergency as when he was diagnosed almost 5 years ago (wow- can it be that long ago?!!!). That part of it was really emotional for me as it brought back a flood of memories. Ok --so this time it was only a split eyebrow, but I just did not want to be there.

Hardy as Isaiah is, the ‘freezy’ gel just did not have the effect of numbing his brow, as it should have and injecting the Lidocaine right above the eyebrow was quite painful. Five stitches later we were on our way home. This was quite a long explanation for something so seemingly simple, --Yet nothing is so simple anymore.

Yesterday the stitches were taken out and it is healing well and perhaps the scar will be minimal.

Mishael is doing well. Last week he went with his class on a little field trip to another school for a band concert. He really enjoyed it and became very enamored with the trombone. Mr. Case (a retired band teacher) came by yesterday to check Mishael’s “musical aptitude” and he brought a trombone and saxophone for him to try. Mishael was very enthusiastic about the trombone, so to make a long story short --we have rented a trombone and now need to find a teacher. This was a surprise and Sal and I would have wanted to think about it for at least a few days, but we also feel that since Mishael wanted this so much --we would give it a try right away. If it doens’t work out, the instrument goes back! Or if he wants to trade for another instrument we can to do that too

That’s about all for the moment. Thank you for thinking of us and checking in on us --and signing our guest book! It is very much appreciated!
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Pat, Sal, Mishael and Isaiah

Tuesday, March 1, 2005 3:41 PM CST

We had some visitors recently. The flu and the strep bugs. It really got us pretty down for ANOTHER couple weeks.

Isaiah had a few really fun filled days at Special Days Cancer Camp a few weeks ago. He was on cloud nine when I picked him up and said that he had the best time. Mishael was at home suffering with the worst sore throat ever --even waking him up at night in severe pain. His tonsils (which are big anyway) were causing some additional problems. He was a good sport about not being able to go to camp with Isaiah despite his painful throat. We took the boys to the lab for flu as soon as Monday rolled around. Mishael had the strep test which was positive (no surprise there). The flu test -- which I thought was a “swab test” ended up being a blood test. That was a scene. After all that Isaiah has been through he refused to take his coat off to have his blood drawn. He wanted it drawn from his port --like that was going to happen! Well the flu test was an absolute waste of time and money as they ended up sending it to CA for testing. That took the entire week to come back and in fact came back late Friday afternoon after the Dr’s office had closed. Fortunately, their Pediatrician had the foresight to start both boys on antibiotics and Rimantidine (for flu). A couple days later Sal, Isaiah and I sat on the couch and all had a temp of 102.5. It all went down hill after that. It was a terrible 10 days. That’s about how long it took to recover.

But --now that we’re on the mend we can look forward to spring! Yes, the fact that it just snowed about
7” will not dampen are spirits! Enough of this snow already (pretty as it is)! Having a snow day today has been nice and we decided to have a fire in the fireplace.

We have had to plan our next trip to Duke sooner than anticipated. Dr. K wants to “see” Isaiah for a day. Of course this short trip is quite costly but I know that unless we go down there we can’t anticipate any weaning of meds. We are hoping that this trip will help stimulate the weaning process! Since we are going, at Isaiah’s request we have planned it around the 5th annual Rainbow of Heroes walk. He really wanted to attend to see “all of his friends”. Since we have learned to “seize the moment” Isaiah and I are planning on attending. Unfortunately, Mishael and Sal will stay home to hold the fort down.

Just an update on Sal’s mom. She has been having radiation for her brain tumors. It seems that they have shrunk considerably which is the good news. She is feeling quite bad these days and very tired. We really don’t’ know much else and can only leave it in the Lord’s hands and pray for my Mother in Law Rose.

My mom was doing quite well, until she had a nasty fall a few weeks ago. It does not appear that she has broken anything but she ahs had to go and see quite a few Drs. and there is some talk of physical therapy needed and perhaps some surgery. For the Binghams it seems that it is always something…but we have much for which we are grateful for and praise God for.
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Thank you for checking up on us a please don’t forget to sign our guest book!

Pat, Sal, Mishael and Isaiah

“Blessed is the man who endures temptations; for when he has been approved, he will receive the crown of life which the Lord has promised to those who love him.” James 1:13

Friday, February 11, 2005 10:41 PM CST

It has been a long couple weeks!

For the past 2 weeks Isaiah has been out of school. He came down with some kind of cold, cough and temp. At first he felt pretty well despite the symptoms but then just as he arrived at camp for the Father & Son retreat, he started to feel pretty bad. Of course, Sal, Mishael and Isaiah have been looking forward to this all year! Poor thing, Isaiah spent most of his time in bed at the retreat while the others had a nice time spending special time with their dads, grandpas, and brothers getting spiritually refreshed and also participating in some special activities. Sal said that he never complained about anything but quietly rested. Fortunately, they took the walkie-talkies and were able to keep in touch with each other. When they came home Sunday afternoon, Isaiah started spiking a higher temp and feeling even worse. I paged his Dr. and we decided to go into the clinic the next morning for a check up. I was so happy we were not admitted due to Isaiah’s fever --it was a CLOSE one!! Fortunately the X-ray was clear despite the awful hacking cough that Isaiah had. Dr. called it a “very bad cold” and gave us a prescription and sent him home to recouperate…

Isaiah was scheduled to have another Imunoglobulin infusion that week (his levels have again dropped very low and he has little protection from what’s going around) but we decided that we needed to postpone it until he started to feel better. We were actually quite worried about how he was going to get through this bad cold because it could get serious with such low levels of what they call IgG. It was a blessing that everyday he showed improvement and by the end of the week he was feeling up to going back to school --but school was cancelled because of a number of the students getting ill! So another day off!

Monday was the big day as we were scheduled to get the IVIG (intravenous imunoglobulin). After very severe reactions the past 3 times he had it, Dr. K at Duke came up with a little different plan. . We were going to start with a steroid 24 hrs in advance and them some other pre-treatment in addition to changing brands. Sounded like a good plan to me! After the infusion was done --Isaiah looked like a little lobster and was shaky but after a little more IV fluid, he claimed he was ready to go to Pizza Hut. Apparently I had promised to take him there for his favorite Personal Pan Pizza the week of IVIG. Well, he looked so forward to it and convincingly told me that he felt up to it --so we stopped by on the way home. He enjoyed every bite.

The next day he didn’t feel very well. Lots of flu -like symptoms (effects of the IVIG no doubt). We were bracing ourselves for a reaction but none came. By Wednesday afternoon I started to breath a sigh of relief…. but NOT so fast. That evening the terrible headache started. This time we were ready and quickly gave him the pain med. It helped. He fell asleep but was restless until 2 a.m. The pain was back and the vomiting started. Oh what bad timing --couldn’t it wait until morning --that’s when it usually appeared!! I paged his Dr. who felt that if we could manage the pain and if not much vomiting --home was probably a good place to be. Fortunately, if worked out (and who wants to go to ER during PEAK flu season?)

The next morning we called the clinic and decided to stay at home and see how things would progress. Well, Isaiah slept all day long. We woke him up to force him to drink. If he didn’t we knew he would have to go to the clinic. That worked out pretty well. By about 7 p.m., when I heard him say’ “I’m hungry”; I knew he was on the mend!!!! By this morning (Friday) he was raring to get going and just in time as it was the day to go to Special Days (cancer) Winter Camp! Mishael was anxious to go too. But, when he got up, he had a sore throat and a temp of 102. He was not going anywhere much to his disappointment and mine! He loves going to this winter camp too.

It will be a quiet weekend at home with only one of our “spark plugs” who is a bit under the weather.

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For you prayer warriors, if you would, please pray for Ryan who is battling neuroblastoma.

Ryan’s Website

Another prayer request would be for two fellow travelers who have the same diagnosis as Isaiah.
Please keep Jared in your prayers as there are some very serious issues going on: Jared’s website

Also, little Parker has arrived at Duke for his transplant. This talented young artist was one of the “Pint Size Picassos” recently featured on the Jane Pauley Show. Parker’s Page

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Thank you for checking up on us a please don’t forget to sign our guest book!

Pat, Sal, Mishael and Isaiah

“Blessed is the man who endures temptations; for when he has been approved, he will receive the crown of life which the Lord has promised to those who love him.” James 1:13

Saturday, January 22, 2005 4:40PM EST

We hope that you all had a lovely holiday season!

I can’t believe that Christmas and New Years have come and gone and that we are more than halfway through January! I’m sorry that it has taken so long to update. It isn’t that I didn’t try; I just never completed my update to put it in.

Christmas and New Years was rather quiet around here. We appreciated the snow during Christmas as it so beautiful and romantic. The farms and old houses covered with snow looked like on a painting and the evergreens looked as if snow was sprayed on. The back yard looks so peaceful and pretty when snow covered and now that we are allowed (by Dr.) to have a real fire, in the fireplace -- it’s like a real winter around here! We are really enjoying the combination of a fireplace and snow and I suppose it makes -3 degrees seem a tad more pleasant! We have probably had about 9” in the last few days with most of it coming in the past 12 hours --and it's still snowing.

Isaiah has been doing pretty well this last month. After his steroid wean his skin really flared up and he had rashes in areas that we had not seen since right after transplant when he was engrafting. We applied creams as much as he would tolerate as I was afraid it would get out of control and then we would have to go back up on the steroids which was something you want to avoid as much as possible. Slowly and stubbornly the rash started to disappear and then boom --it was back all over his torso and up his arms and then we started all over…

Isaiah’s clinic visit last week went well. Other than some slightly elevated liver functions, things looked good. He will have to increase his water intake to see if that has any effect on the numbers and if not then I think we will need to look at some of the meds. Oh how we are yearning to hear the word “wean” again!

Mishael is enjoying school this semester and is thrilled to fulfill a dream to be safety patrol. He is charge of kindergarteners and takes his duties very seriously. This has been good for him and he seems to be maturing a little bit lately.

I have continued with my classes but this semester I am only taking one. Between certain obligations from last semester, 2 classes including observations at a high school it really wiped me out and I just had to slow down and catch my breath. This semester should be better for me.

One piece of news that we are just devastated and sick about is that we recently found out that Sal’s Mom has brain cancer. She just started radiation last week and we don’t know much about the details but that we have to take it day by day. Sal’s Dad is holding up and putting on a brave front but says it is very depressing and difficult. It appears that she has also suffered some kind of stroke (this is only my observation from afar) as she has lost some ability to reason properly and carry on with her normal activities. Please keep Rose in your prayers. We can only pray that God gives them and gives us the strength to be as supportive as we can to them although it is difficult when we are 500 miles away.

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For you prayer warriors, if you would, please pray for Ryan who is battling neuroblastoma.

Ryan’s Website

Another little warrior recently passed away after a very tough time post transplant. If you would like to visit his site it is: Ethan’s Website

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I will try to update more often this year! We are looking forward to some winter camps that are coming up this month and I might even try my hand at snow boarding. Better start getting in shape!!!

THANK YOU so much for your prayers. We praise God for his goodness and the blessings and strength He gives us.

Pat, Sal, Mishael and Isaiah

“Blessed is the man who endures temptations; for when he has been approved, he will receive the crown of life which the Lord has promised to those who love him.” James 1:13

Monday, December 20, 2004 11:42 PM EST

2 years post transplant and some odd days…

Isaiah told me that one of his favorite post transplant words is the word “wean” --as in less medicine. We were finally able to do something about that Prednisone (steroid) --the medicine we love and hate! Isaiah is now is on an every other day schedule. Let me back track. Isaiah had his monthly check up about 10 days ago. His blood work was good and there were no surprises. But, his skin flared up again. I say this every time don’t I? We were particularly concerned because of the reduction of the steroids at about the same time of this stubborn skin breakout. Wouldn’t you know that a few days after stopping the steroid there were some ugly scabs on the top of his scalp! I think it is coincidence and not related to the steroid wean but wonder where this coming from all of a sudden. We are treating the scalp with a liquid steroid, special shampoo and conditioner. It is looking a bit better.

Oh yes, another piece of news --Isaiah grew out of his dress pants! Yahoo, this is great news!! He has grown a little bit and gained a few pounds. The growth --even if it is a tiny bit at a time is so significant!

I have to admit that we are looking very forward to a break from school, bowling, piano and violin so that we can all recharge our batteries. I am having my 8th dentist appointment for my same tooth tomorrow and I sure hope it is my last one.

We are sticking very close to home this holiday season and will probably be enjoying the snow that is coming our way. Sal and I will enjoy it from the inside and the boys from the outside…

We wish you all a blessed holiday season. Please make those special memories. Reconcile with loved ones. Life is too short and too precious. Sal and I still have to remind ourselves not the worry about the truly insignificant “stuff”. Haven’t we learned yet???!!! Still working on it…

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For you prayer warriors, if you would, please pray for these precious children.

Both sweet little boys (along with their families) are going through some very difficult times.

Ryan’s Website

Ethan’s Website

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THANK YOU so much for your prayers. We praise God for his goodness and the blessings and strength He gives us.

Pat, Sal, Mishael and Isaiah

“Blessed is the man who endures temptations; for when he has been approved, he will receive the crown of life which the Lord has promised to those who love him.” James 1:13

Friday, December 3, 2004 9:30 PM EST

2 years post transplant 7 days

The leaves have fallen off the trees and the gray November skies have moved in and taken us right into the Holiday season! Thanksgiving is a wonderful time to be reminded once again how thankful we are! Of course the fact that Isaiah’s 2 year post transplant anniversary was the day after Thanksgiving and then Mishael’s birthday 3 days after that was another powerful reminder.

Thanksgiving morning we awoke to 4-5 inches of snow clinging to the trees and deep blue skies with plenty of sunshine. It was an awesome sight. We soon headed over to my cousin Becky and Carl’s house --only 70 miles away and not a “speck” of snow. Ah, the sight they missed!!! We all love to go and visit and this time was no exception. It isn’t often that one can gush about wonderful teenagers but they have 3 wonderful teenagers!

Isaiah’s re-birthday was celebrated the next day by seeing “The Incredibles” and having a Frosty afterwards. We celebrated Mishael’s birthday a couple days later by going out to dinner. It was quiet, low key and wonderful.

Isaiah has been feeling pretty well (except for “something” that grabbed hold of him and made him feel very yucky for about 24 hours). His skin has flared up under his arms again and that is where the rash is very stubborn and itchy. It takes days to get rid of this one. We are still waiting for the results of the more sensitive blood tests.

We have not really had a chance to get ready for Christmas. I am trying to finish up my 2 classes at school and also have had to have numerous dentist appointments for my problem tooth. By the time I am done I will have had no less than 10 appointments (with 3 dentists!!) to take care of the tooth (some appointments lasting over 1 ½ hours). I was glad to hear the Endodontist tell me that he has done over 14,000 of these because I wondered why I had to see him 4 times!!!! I’ll sure be glad when that’s over. Of course it is another insurance issue and we have to fight this one too for some rejected claims. We’re just so tired of it all.

For you prayer warriors, if you would please pray for these precious children.

Both sweet little boys (along with their families) are going through some very difficult times.

Ryan’s Website

Ethan’s Website

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Thank you all for continuing to check up on us and signing our guestbook to let us know you stopped by --we really appreciate it.

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THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.

Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5:22

Thursday, November 18, 2004 11:14 AM EST

721 days post transplant - 9 more days and it will be 2 years!

I cannot believe it has been a week since our trip to Duke! It has taken this long to recover and get caught up.

This is how things went. We arrived in Durham after a long day flying and changing flights. This was our first commercial flight in almost 3 years. Isaiah couldn’t t decide if he prefers Angel Flights or flying on the “big planes” .I prefer anything that flies as long as we don’t have to drive the 750 miles --especially when we can’t stop and enjoy the scenery.

Jill and Alex had arrived the day before from CA and picked us up from the airport. I really appreciated the sunshine that awaited us outside. What a nice way to start our stay --seeing Jill and Alex and the nice warm weather. We headed to the hotel and settled in.

The next day was the heavy day of tests. The tubes for blood draw were countless. We also had an Echo, Pulmonary and x-ray to go to. Then it was the infamous IVIG infusion. Isaiah was pre-medicated to try to avoid any reactions. That evening we got a call that they saw “something on the x-ray and had to go in for a CT scan the next morning. I tried not to worry. That evening really was one of the highlights of the trip. We ran into Marcella and Sean (our fellow travelers from when we were inpatient). Coincidentally, Sean and Isaiah share the same diagnosis. We were thrilled that they had come form Chile that particular week. Marcella took us to a real Italian restaurant that evening. I think the boys didn’t know what to make of a restaurant that didn’t have a ‘kid’s menu” and didn’t offer fries or grilled cheese! They reluctantly settled for some pasta. Needless to say it was so delicious that they almost ate the plates. Isaiah has already asked if we could go back to Tosca when we visit again. Of course it wasn’t only the food that was so wonderful. It was the fact that there were three boys who were able to get together (with their ‘ever-worried’ moms) and celebrate 2 years post transplant). Each one has their own issues, but all things considered it was great to be together.

The next day we spent most of the day in the clinic. Thanks to Isaiah’s Best Buddy Carrie and her friend Michelle who came over to keep us company --the time went by faster and was so much more pleasant!! It was so good to see you both --thanks for coming by to visit with us!!! It was past 7 p.m. when Dr. Kurtzberg was able to see us. It was a long wait but the silver lining was that if gave Jill, Marcella and myself a nice chance to really talk, trade stories and catch up on things in a very quiet waiting room. Isaiah’s visit with Dr. K. went well. All in all she was really pleased with his progress. By the CT scan, Dr. K. determined that the “nodules” they had seen on the x-ray were not worrisome. The sinus scan did show some sinus disease but it should go away on its own. The really important blood tests are pending.

So here it was evening and no IVIG reaction. I was pretty pleased! The next morning as we packed up and prepared to go to the airport, Isaiah complained of a headache and vomited. I called the clinic immediately and we went in for IV fluids. Everything got progressively worse. The headache was so bad that again he had to get morphine. He screamed and screamed. Eventually, he fell asleep and we had to of course cancel the flight and make new hotel arrangements. Now we were convinced that Isaiah was not reacting to a bad Lot # of IVIG but to the IVIG itself. By late evening he was started to perk up. Our friends the Kings picked us up and we headed to the hotel and then to get a bite to eat. He ate well and seemed to be on his way to recovery. Isaiah’s highlight of the day (if there was one) was that he found his LOST Duke hat at the restaurant. He had cried earlier when he discovered that we had misplaced it. He was so happy and felt that if it wasn’t for the reaction we would have been home by then and the hat would have been gone forever. The next morning we had the bonus of having breakfast with Marcella, Sean and their former teacher Marshall --what a wonderful way to end out stay and spend more time together!!! Thank you all so much. Jill and Alex --we were so grateful to spend some really nice time together --thanks for the rides. It was very much appreciated. And Josefa and General --thank you so much for everything. We love you.

We arrived home safely. The after effects of the IVIG were evident for days. Lots of muscle pain and little headaches. Last night he vomited and had a slight temperature --it’s always something. Today he is better and hoping to be able to make it to the Thanksgiving dinner at school and his “chimes” performance.

Thank you all for continuing to check up on us and signing our guestbook to let us know you stopped by --we really appreciate it.

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THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.

Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm

Saturday, November 6, 2004 11:26 PM EST

Just a short update this evening as I am getting ready to fly to Duke with Isaiah early tomorrow morning. We have had so many obligations with Isaiah and Mishael's school, as well as my school (and other things) that I am a little behind to say the least. Unfortunately the "packing fairy" did not make an appearance (as I had hoped) and I had to pack at the very last moment all by myself! In fact, I am still not done!

Isaiah cannot wait to go to Duke and see his buddy Alex who is coming in from California. He is thinking he is going on vacation but we will probably spend most of our time at the clinic for the numerous tests and we unfortunately will need to get an IVIG infusion while at Duke. The last 2 times he has gotten the IVIG, he has had a very bad reaction --so we hope that this time things will go much more smoothly.

I will update shortly after we return home.

Thanks so much for keeping up with us and signing our guestbook. We really appreciate it.

Pat, Sal, Mishael and Isaiah

Sunday, October 17, 2004 1:34 PM EDT

690 days post transplant --almost 700!!!!!

Isaiah and Sal’s birthday went by quietly. We did not have a party this year. Thank you all so much for signing his guest book with birthday wishes and other notes to let us know you stopped by. Isaiah has read them all!

It is once again with great sadness that I share the news that “sweet baby” Jordan passed away on September 26 in the arms of his loving parents. Jordan’s Dad Pat and his Grandpa Mike were the very first people we met when we arrived at our new home in North Carolina. They came right out to help this tired family unpack. What a blessing they were through out our stay. Jordan was born a few days after we arrived and had a transplant when he was a little over 1 month. We enjoyed so much having them as neighbors not only in the apartment building but on the BMT unit as well. Please continue to pray for this young couple as they try to heal from this ordeal. Jordan’s Journal

Fall has arrived. When the leaves start to fall (like they are right now), it reminds me of Isaiah’s diagnosis 4 years ago. I remember vividly that he was so sick he couldn’t even pull himself off the couch to come out and jump in the leaves and enjoy being outside. It was a few weeks later that he was diagnosed

But, let me “fast forward”. Had I posted this update when I had started it --about a week ago, I would have gone into detail about how uneventful of a month it has been. But, this last week was a little more turbulent. On Wednesday morning, Isaiah’s teacher called to tell us that he was not feeling well. Since I was in class, Sal called the clinic and took him in right away since it was actually his monthly clinic day and we would just be in a few hours earlier that planned. There is quite a bit of a bug going around here anyway. The labs were normal. That was a huge relief. He was feeling better by then, not as dizzy, and weak as before. He complained of leg pain, back pain and muscle aches for the rest of the day. The next day we took him to school and again he didn’t feel well so Sal picked him up. He perked up a bit but was obviously “not himself”. It seemed that in addition of a number of symptoms he also was very unmotivated to do absolutely anything (except play). It was all very odd. Friday he stayed home, as he seemed very tired despite a good night’s rest. I wrote Dr. K and she said (knowing that I had stopped his Magnesium completely 2 weeks prior) that it “may” be the Magnesium and told me to start it up again. Here I had been so happy to get rid on another pill, plus I was really happy to see that he was holding his own on the Mag. And actually his levels were within the norm. Well, here we are 3 days later and the muscle cramps, backache, headaches, confusion, leg pains have gone. Is it related to the magnesium? Hard to tell. This whole episode did cause a lot of anxiety and the same “knots” in my stomach that I had experienced before. Between this, and my terribly painful and infected nerve in my jaw it was a very long week. I hope these episodes are behind us.

Oh yes, another wonderful day we had last week was our visit to Xanadu Farms. They had their annual Chemo Kids day. It was a spectacular fall day, with blue skies and warm temperatures. Our friends the Maizlands came to join in the fun at the farm. It was wonderful to share such a nice time with friends. Their son Trevor, who is about 10 months post transplant and doing very well and looks GREAT!! We praise God for these miracles!!! At the farm, they had some really fun games for the kids, horseback riding, crafts, hayride, a bonfire (with smores) and a very neat lassoing contest. That was Isaiah’s favorite. He took the contest very seriously and did very well --he was so focused. Thank you Greg and Linda for spearheading this wonderful annual event and to all the volunteers who so generously donate their time and talent. It is very much appreciated by us (and I'm sure all others who attended)!

Thank you all for continuing to check up on us and signing our guestbook to let us know you stopped by --we really appreciate it.

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THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.

Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Tuesday, September 21, 2004 7:30 AM CDT

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Isaiah’s 9th birthday is on Sept 22! We praise God for another birthday! (Sal’s is on the same day too!)

We are still enjoying the summer-like weather here. The sunshine and the crystal clear air and really blue skies have been such a nice change to the cool rainy days of summer.

It has been a rather quiet couple weeks. Piano has started up again for both boys and Isaiah is also taking up violin again. Bowling was last week and it was so nice to be back. The boys were on cloud nine. They were really pleased to have a new little guy join their team (although they miss their former team mate).

School continues for the three of us and things are going well in that area. I cannot believe that it has been almost a month since the boys have started school!

ON THE MEDICAL FRONT

Isaiah finally got his cast off. The bone has healed nicely. I though I was more than ready to have his cast off --but apparently not ready for what I saw underneath the cast. The skin around his wrist was sooooo pink, raw and smooth. Ugh. Fortunately Isaiah had to go in and get another x-ray taken while I ran over to sit down, as I just felt so nauseous. I was pretty freaked out. First, it wasn’t what I expected and secondly my mind imagined all the possibilities of “run-away” infection or skin GvH. The Dr. seemed a bit surprised but I am glad he didn’t have an “alarmed” look on his face. I was “confident” that whatever cream he suggested we apply --that I had it in “stock” at home! They put some sulfa cream on (used for infection and often for burns). It was covered with gauze for another 24 hours. That was good because it was so hard to look at. Of course, Isaiah was not fazed at all…it is healing well but still very dry and spotty pink.

Our clinic appointment was last week. It went well and counts are stable. We may potentially be able to drop the magnesium pill--- which would be nice. Oh what baby steps with these pills. I still don’t know how he is able to swallow all of them every day.

Isaiah has developed a deep cough but fortunately we see some improvement day by day. There is a lot going around. We hope it goes away quickly and on its own. Well, that’s about all from our corner of the world. Isaiah is counting down the days to until we go for his 2 year check-up at Duke. He said he “can’t wait" to go!

Thank you for continuing to check up on us and signing our guestbook to let us know you stopped by --we really appreciate it.

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For our Prayer Warriors --

Our little friend Jordan STILL needs our prayers desperately. Please keep Jordan and his family in your prayers. His family has actually moved down to North Carolina to continue with his care at Duke Jordan’s Journal
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THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.

Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Tuesday, September 7, 2004 10:24 PM EDT

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Summer is finally here! Well, it is weather wise! We had to patiently wait until September to get some 80-degree weather!!

The start of school has placed another step of normalcy in the life of the Binghams. I savor every moment of it and have to pinch myself to believe that both boys are going to the same school at the same time and taking them to school every morning is almost like “old times”. Wow --it’s great!

The boys have completed two weeks of school! So far they really seem to like school. I know that Isaiah misses his old school that he attended for 4 months last year (and his friends), but this school is not so overwhelming -the whole school is smaller than his entire third grade class was!

Mishael is also enjoying his new class and the fact that they have P.E. every day is really great. That’s a real hit with both the boys.

I also started school a few days before Labor Day. I don’t think I would have gone back this semester had I not started losing credits because of a “5 year rule” which relates to the educations classes I have taken. I have already lost many credits in the past and after so many years of additional schooling did not want to lose them again. I am taking 2 education classes. I don’t’ know how much energy I have for all this but at least I got the majority of the more difficult classes (for me) out of the way before. So far I think I will be able to handle the classes because there are no midterms or finals --or quizzes! Mostly papers, presentations and observing and teaching (maybe) at an urban school. So, I am on a new adventure as well. I really miss teaching at the University which I quit soon after Isaiah was diagnosed almost 4 years ago. There was much nostalgia as I walked down the halls and the familiar places for the first time after such a long time --although it seems like I never left (in a way). But so much that has happened in the meantime. As I sat down in my classes I thought about how much has indeed been packed into the last four years and how much life has changed and how much we have grown.

(At least I didn’t “chicken out” and not go to class!!!!) Fortunately, I am nearing the end of the course requirements and after these 2 classes will be able to see the light at the end of the tunnel.

ON THE MEDICAL FRONT

It took Isaiah a few days longer to recover from his IVIG. He had persistent headaches for a few more days. We hope he won’t need it again!!!! There is not much change in his skin --even though he still has mild GvH, it is starting to get irritating. But we will take it. In exactly 2 months Isaiah and I will be heading down to Duke for Isaiah’s 2-year check up. We will be curious to see if there will be any weaning of meds. Isaiah said he “can’t wait to go to Duke”!!!

We recently went to the Dr’s to see how his wrist is healing. Dr. said it was “healing beautifully”. That was music to my ears! Isaiah will be getting the cast off in two days and we can’t wait!!!

Hope everyone enjoyed the long weekend. We had a chance to visit with some friends (thanks Tom, Linda and Amy --it was a real treat to spend time with y’all!!!!) The boys didn’t want to go home --they had so much fun!! The summer days are quickly growing shorter and the leaves are starting to turn as the harvest is upon us. It is a beautiful time of the year in Michigan but I don’t’ look forward to the winter that follows and seems to last so long.

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For our Prayer Warriors --

Our little friend Jordan needs our prayers desperately as he is undergoing a 2nd transplant almost 2 years after the first. Please keep Jordan in your prayers. His family has actually moved down to North Carolina to continue with his care at Duke Jordan’s Journal
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Thank you for continuing to check up on us and signing our guestbook to let us know you stopped by --we really appreciate it.

THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.

Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Monday, August 23, 2004 8:41 AM CDT

634

August has gone by so fast and it has been so full of activity that we have hardly had a chance to take a breath. School started today! This is the first time that the boys have started school together (and at the same school) since kindergarten! Mishael is starting 5th grade and Isaiah is in 4th. They were so happy to go to school and could hardly get to sleep.

This past month has been full of activity. Isaiah managed to enjoy his Special Days Camp despite his broken arm and a cast that was big and uncomfortable. During his week at camp I picked him up and he went to get his temporary cast off and a smaller permanent cast on. He was on cloud nine when he returned to camp the next day with a smaller “blue” cast. This one gave him the ability to move his arm with much more ease and it certainly didn’t stop him from many activities

Between this camp and our family church camp we were invited to share our story at the 4th annual memorial golfing outing for a group of family and friends who honored a very special young man from our area --Paul Benjamin. A wonderful group of people have worked very hard to raise money for the Children’s Leukemia Foundation (CLF) by putting together this golfing outing. It was a privilege to be invited and meet everyone involved --a BIG thanks to all those who were so kind. We all enjoyed meeting everyone so much!

The next morning we all headed to family camp. The weather was great and we were off to a great start. Well almost --Isaiah got hit in the face with softball that afternoon but that didn’t hold him down. The next day he got a bite on his hand that was very painful. Finally that got better.

Then the rain started and the cold weather moved in. Despite these minor setbacks we were able to have a very nice and blessed time at camp. We took a ceramics class together and wouldn’t you know it we all individually picked frogs to work on (completely different styles though!). The boys did some jumping off a telephone pole (with a harness of course). While it doesn’t sound that scary --I know that it takes some courage to climb up there, stand on top of the pole balancing yourself at the top and jumping off. It looks a lot scarier when you are up there or on a “zip line” where you have to climb very high into a pine tree and take a wire across a clearing. What a thrill that is! They also did some wall climbing and it was clear that nothing would keep Isaiah from giving it all he had. He was so pleased that he finally could drive all by himself in the Go-Karts. Oh those simple pleasures!!!! We met some wonderful families and despite the constant rain and very cold temperatures we did manage to savor every moment of God’s beautiful handiwork as we were surrounded by of endless pine trees, all kinds of critters and spectacular nature.

Admittedly were anxious to come home and sleep in our comfy, warm beds!

ON THE MEDICAL FRONT

We had a scheduled infusion of IVIG last week (for the first time in 5 months). We have had this same antibody infusion countless times in the last year and half. All went well during the day and that evening. When Isaiah woke up the next morning he had a terrible headache. Knowing that he needed fluids we started with the water as soon as he woke up. Unfortunately, he started vomiting every time he drank anything. This wasn’t going to work --especially since his headache was getting worse to the point of his shrieking in pain. Since he also had a temperature, we decided (and Isaiah insisted) on going to the clinic and getting some IV hydration. He could hardly drag himself to the car and then walk thought the hospital to the clinic. His headache was so bad when we arrived that he was given morphine. The day was spent with him sleeping in his room, in almost total darkness. Of course it was probably one of the most beautiful days of the summer and we were stuck in a room far from any windows. I though that once he got a little hydration, he would start perking up. Not so. In fact, by afternoon, we had to cancel his appointment to see the Dr. for his arm (the one he fractured). It was time for the clinic to close and I expected that he could go home and rest. Instead, he had a temperature of almost 103, so we had to be admitted to the unit. I couldn’t believe it! It was our first admission since Isaiah left after transplant. I had a feeling it was just for more hydration and observation. Nevertheless, just going back to the Peds unit, and being in the same rooms as for so many chemo stays brought back a flood of memories. It was especially odd, as that morning it never occurred to me that we might go inpatient. All things considered it went well and by evening as he cracked his first joke we knew that he was finally starting to feel better. The best news of all was when the Dr. on call told me that since “these are the potential side effects of IVIG” (headaches, muscle aches, sensitivity to light, etc.) they felt that Isaiah wouldn’t need a spinal tap!! Well, that alone made me feel MUCH better! Especially since it had not even crossed my mind!!! It was nice to see some of our night shift nurses that we hadn’t had a chance to see in the last 2 years so in a strange way, Isaiah and I did enjoy parts of our stay.

We scrambled to get ready for school and managed to fit it a trip to Crossroads Village fro a few hours on Sunday. The boys earned some free passes through the public library for completing a certain level of reading. What a nice prize! Our friends Linda and Tom joined us and we really enjoyed a beautiful summer day at the “Old Time Village”. It was a perfect afternoon to spend together before the start of a new school adventure. We have so much to be grateful for.

Well, that’s all for now. The boys are in school as I write this. I will try to get Sal to put some new pictures as soon as I can!

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For our Prayer Warriors --

Our little friend Jordan is in the hospital again --he’s stable but has, and is going through a lot at this time.
Please keep Jordan in your prayers. His family has actually moved down to North Carolina to continue with his care at Duke Jordan’s Journal

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Thank you for continuing to check up on us and signing our guestbook to let us know you stopped by --we really appreciate it.

THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.

Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5:22

Saturday, July 31, 2004 7:45 PM CDT

613

As I sit down to write another update I am again very saddened to write that our friend and fellow traveler, Adam has passed away. Adam so courageously fought his battle with Leukemia for so many years --longer than anyone we know. We met Adam and his family at our little clinic at the beginning of our journey nearly 4 years ago. They had already been “at this” for at least 3 years prior to Isaiah’s diagnosis. We shared our sorrows and joys as we traveled down this very bumpy road. His strength, those big brown eyes and his incredible Lego building talent will remain etched in my heart.

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At the Bingham household, we continue to strive for that sense of normalcy. Mishael was at Sibling cancer camp this past week. We picked him up today and dropped Isaiah off. Mishael had a wonderful week at camp and despite giving his counselor Brent a few (or quite a few) headaches, he seemed to have enjoyed the week and our “little spark plug” went right to sleep upon coming home, as he was one tired boy.

Isaiah convinced us that he wanted to go to another soccer camp this week. This was a 5-hour daily camp and we thought that it would be good for him socially, for exercise and the fact that it was indoors was great because we didn’t have to worry about sun exposure. Everything went very well until Thursday. I got a call that he had gotten hurt and wanted me to pick him up. Since he is “one tough little boy” who always seems to “pick himself up” I headed over there trying to worry. He had hurt his wrist as he defended the goal and was hit by a soccer ball. His pain was very intense and he was in tears for what seemed like hours. I took him to emergency as soon as I could figure out where to take him. It was the first time we had to go back to Emergency since original diagnosis --so there were some mixed feelings there. The X-ray showed a fracture. It wasn’t too serious but still needed a cast. I was a bit disappointed but grateful that it wasn’t worse. It wasn’t until that evening that I really felt down about the fact that here he was, on the verge of going to camp, he finally got Drs. permission to go and he has this cast on that envelops his whole arm. He can barely move his arm. Not to mention -- how is he going to take a shower, apply creams at camp, etc. Anyhow, after a day of back and forth about whether to go or not, we packed him up and traded boys at camp today. So Isaiah is at camp. He seemed to be happy to be there and not clingy at all so I think that that is the right thing for him to do. He’ll manage (with the help of the fantastic staff) and it will be another learning experience (albeit one that we didn’t need at the moment).

I told Isaiah that now he FINALLY has a “good excuse” for not practicing the piano and violin.

Another disappointment was that our friend Jennifer (whose son Trevor [see new picture in photo album] was recently transplanted too) and her family had invited us to join them (and a number of other families) to go to the Detroit Tigers game that evening. We were looking forward to enjoying the afternoon and evening together (and of course the baseball game). There were some special pre-game events for this special group of children and the opportunity to have some fun at the merry-go-round and at a few other planned activities. Unfortunately, we were stuck in at Emergency and couldn’t make it on time.

On the Medical Front...

The skin thing is still going on. Flare ups when least expected again. As we left him camp today we noticed a rash on his neck! Now that’s a new location! I have learned (only recently) that I have to keep Protopic (steroid cream) in my purse at all times. I put some on him, we said good-bye, and we were on our way back home with Mishael.

Isaiah also had a post transplant eye exam this week. It was a very thorough exam. His vision is fine. He also had some drops put in his eyes to dilate the pupils so that the doctor could look in them to see if there was anything that was forming (like cataracts) due to long-term steroid use or some other damage due to chemo drugs or radiation. I think that long tem steroids are the main culprits of cataracts but I’m not sure. Anyhow, Dr. turned to me and said, “His prognosis is good”. Now what did that mean? I had no clue. After I asked him to clarify, he said that he saw nothing in the eye (wherever and whatever he was looking for). And, he said that if there were some problems developing, that he would expect to see them by now. I of course was elated to hear this! But, I know “from experience” that we can be happy for the great report and always cautiously optimistic about the future and problems that may come up as a result of treatment and transplant.

Well, this has been long winded enough. Next week is Isaiah’s clinic visit and he will get his permanent cast too. I will update then….

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For our Prayer Warriors --

Please continue to pray for Paige’s family, Steven’s family and Adam’s family.

Our hearts are aching for these families and the pain they are going through.

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Thank you for continuing to check up on us and signing our guestbook to let us know you stopped by --we really appreciate it.

THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.

Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Thursday, July 22, 2004 10:43 PM CDT

604 --Two years from relapse.

As I walked down the aisle today at the store, I was drawn the newly displayed school supplies. I love pens, stationary, paper and all those types of things. It was the best part of going to school! Suddenly, I realized that we would need to buy supplies for both the boys! What a nice thought!!! In fact, in just about a month, school starts up. Since Isaiah will be transferring to a smaller school, it will be interesting to see if he will feel as stressed as he did in a bigger school. He did love going to his old school though and I know he will miss it.

We have had a lot of activities these past few weeks. Mishael went to church camp a few weeks ago. He thoroughly enjoyed the experience and loved going to his Lego Robotics workshop. Isaiah and I went to the library a few times and Isaiah went to a mini “Fun with Strings” camp for 2 weeks. He enjoyed that very much and he was in the more “advanced” violin class. All the groups had a very lovely (& cute) concert at the end of the session. Isaiah's goal is to make it into the jr. youth symphony orchestra and he is planning on trying out. Otherwise, it has been very difficult to get him motivated to do much of anything. I suppose that comes with “summer vacation” but it is disappointing that the reading has dwindled to no reading at all. Even incentives don’t seem to entice them. I would read just for some of the items the local libraries are offering as prizes as they are very nice!

This past week the boys have gone to soccer camp in the evenings. It has been a dream of Mishael’s to play soccer so this camp was perfect for him. Perhaps these leagues will be able to fit into our schedule next year. It would be good for him. Isaiah has also gone to camp and, even though he would still love to play hockey, he has really played hard during camp and seems to enjoy it very much.

On the Medical Front...

We had a rather bad bout of skin rashes for about a week. It popped out of nowhere and it itched and really hurt. In fact, it even woke Isaiah up during the night a few times because it stung so much. None of the steroid creams seemed to help. I contacted Dr. K and she called in a new cream. This one is used for burn victims to help with infection. Well, that really did the trick because when I applied it did not sting nor make it itch. Within a day, I could start applying other creams. I used about 4 different creams 4-5 times a day. Finally it went away and the skin looks pretty good now. The GvH rash pops up here and there almost every day --but not like the last episode.

Our last clinic visit went well. Labs were fine. Magnesium actually went up, so the body is not wasting it like before--that’s good news. But, since we are still dealing with the skin “eruptions” there were no other changes made to the meds. Still a handful to take each day. But that’s O.K. We will take this in lieu of any other complications!

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For our Prayer Warriors --

Again it is with great sadness that I let you know that little Steven passed away. Please keep the family in your prayers and if you would like to check his website and leave a message --please do. Steven Trapp .

Also, please continue for Paige’s family. I’m sure that her family is struggling with her passing. This family, like Steven’s has so much faith and have touched so many lives. Paige's Playhouse

Please continue to pray for our friend Adam. Adam and his family have been fighting this battle for 7 long years. The recent news has not been good. He has been hospitalized for a few week now and feel pretty bad. Please pray for the doctors to know what direction to take at this point and strength for the family.

Our hearts are aching for these families and the pain they are going through.

Thank you for continuing to check up on us and signing our guestbook to let us know you stopped by --we REALLY appreciate it.

THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.

Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Thursday, July 22, 2004 11:50 PM CDT

+604 --Two years from relapse.

As I walked down the aisle today at the store, I was drawn the newly displayed school supplies. I love pens, stationary, paper and all those types of things. It was the best part of going to school! Suddenly I realized that we would need to buy supplies for both the boys! What a nice thought!!! In fact, in just about a month, school starts up. Since Isaiah will be transferring to a smaller school, it will be interesting to see if he will feel as stressed as he did in a bigger school. He did love going to his old school though.

We have had a lot of activities these past few weeks. Mishael went to church camp. He thoroughly enjoyed the experience and loved going to his Lego Robotics workshop. Isaiah and I went to the library a few times and Isaiah went to a mini “Fun with Strings” camp for 2 weeks. He enjoyed that very much and he was in the more “advanced” violin class. His goal is to make it into a youth symphony orchestra and he is planning on trying out. Otherwise, it has been very difficult to get him motivated to do much of anything. I suppose that comes with “summer vacation” but it is disappointing that the reading has dwindled to no reading at all. Even incentives don’t seem to entice them. I would read just for some of the items the local libraries are offering as prizes as they are very nice!

This past week the boys have gone to soccer camp. It has been a dream of Mishael’s to play soccer so this camp was perfect for him. Perhaps these leagues will be able to fit into our schedule next year. It would be good for him. Isaiah has also gone to camp and although he would still love to play hockey, he has really played hard during camp and seems to enjoy it very much.

On the Medical Front...

We had a rather bad bout of skin rashes for about a week. It popped out of nowhere and it itched and really hurt. In fact, it even woke Isaiah up during the night a few times because it stung so much. None of the steroid creams seemed to help. I contacted Dr. K and she called in a new cream. This one is used for burn victims to help with infection. Well, that really did the trick because when I applied it did sting nor make it itch. Within a day, I could start applying other creams. I used about 4 different creams 4-5 times a day. Finally it went away and the skin looks pretty good now.

Our last clinic visit went well. Labs were fine. Magnesium actually went up, so the body is not wasting it like before--that’s good news. But, since we are still dealing with the skin “eruptions” there were not other changes made to the meds. Still a handful to take each day. But that’s O.K. We will take this in lieu of any other complications!

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For our Prayer Warriors --

Again it is with great sadness that I let you know that little Steven passed away. Please keep the family in your prayers and if you would like to check his website and leave a message --please do. Steven Trapp .

Also please continue for Paige’s family. I’m sure that her family is struggling with her passing. This family. Like Steven’s have so much faith and have touched so many lives. Paige's Playhouse

Please continue to pray for our friend Adam. Adam and his family have been fighting this battle for 7 long years. The recent news has not been good. Please pray for the doctors to know what direction to take at this point and strength for the family.

Our hearts are aching for these families and the pain they are going through.

Thank you for continuing to check up on us and signing our guestbook to let us know you stopped by --we really appreciate it.

THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.

Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22
Normal

Saturday, July 3, 2004 11:35 PM EDT

+585

It is high time to update again. Thank you for checking up on us and signing our guestbook. We really appreciate it. We wish everyone a Happy and safe 4th of July weekend. I always feel that the celebration should last all week long as it’s one of those more festive holidays!

We have been having a busy summer thus far. The boys and I went to Church Camp Meeting in mid June and stayed for a few days. Unfortunately, Sal had to work but I know he would have loved to come with us. We wish we could have stayed longer as it was such a spiritual blessing and the speakers were wonderful. The boys really enjoyed their time (and freedom) there as well. In addition, we got a chance to see old friends and make new friends. I couldn’t help but feel so grateful just to be there again and remind myself how much has happened in the past 2 years and that just the fact that Isaiah was running around freely and “doing his thing” was truly another blessing.

Mishael is getting ready to go to a series of camps and the house sure will be quiet without our resident “spark plug”. He has been asked by our neighbor to teach beginning piano to her 6-year old granddaughter. We all thought that it would be good for him and that he could handle it. The first two lessons (I hear) have gone very well and his little student is progressing. Since Isaiah can’t understand why he can’t teach (well -- there isn’t another student) he will fill in when Mishael is at camp.

It’s hard to believe that July is already here. Next month school begins --what!! Already!! We haven’t even had any recent 90 degree days! Speaking of school, I have decided to go back and try to complete my requirements for my teaching certificate. I don’t have too much more to go and I am starting to lose credits. Since I had lost quite a number of credits in the past, I just cannot afford to lose credits again. I will try my best, but I don’t have a lot of energy at this point for any “tough classes”.

On the medical front…

Since we had weaned the magnesium pills from 6 to one per day we are very curious to see what his magnesium is running at. This next week will be our clinic visit. The skin rash is acting up less and we sure hope it is starting to “burn itself out”. It flares up but not quite as often. Unfortunately on a recent sunny day, even though Isaiah had sunscreen on and was not in the sun for too long, in the evening the rash appeared in areas that it had never appeared before. Fortunately those patches were gone by morning with some application of steroid creams. But, due to the continual problems we can’t let Isaiah swim in lakes (for the 4th straight year) so on the 4th he will perhaps just wade his feet in the water.

Next week Isaiah will be attending a Fun with Strings Violin camp at the Flint Institute of Music. He just can’t wait. This time he has his own violin and can go into the “workshop” class. Well, that’s one way to get him to play the violin everyday --- at least for the duration of camp!!

If anyone is interested in the Wall Street Journal article on “Life after Transplant”, please let me know a I have taken it out of Journal History due to the length of the article.

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For our Prayer Warriors --

Please keep Spencer in you prayers as new cells vie for their spot and he recovers from transplant. Spencer Rocket

Also, please include brave little Steven in your prayers and his parents. He is not doing well at this point and is in a lot of pain. He same diagnosis as Isaiah and is really struggling with relapse. Steven Trapp It is an incredibly difficult journey for them.

And also pray for Paige’s family. It is with great sadness that I have to say that it I attended Paige’s funeral today. She was barely 3 years old, but touched so many lives in her short time on this earth. She was a very special child. Paige's Playhouse

Also, I would like to add our friend Adam to our requests. Adam and his family have been fighting this battle for 7 long years. The news from yesterday’s bone marrow aspiration is not good. Please pray for the doctors to know what direction to take at this point and strength for the family.

Our hearts are aching for these families and the pain they are going through.

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THANK YOU so much for your prayers. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Monday, June 14, 2004 11:05 PM EDT

Thank you for checking up on us!

School's out for summer! Isaiah is out of school and now officially a 4th grader. He started and finished the school year without getting a cold! What a blessing that is! He was happy that school was over but I think also sad to lose the social aspect so soon,. It seems that he just started back in school a few weeks ago.

In the meantime…
We took a quick trip down to St. Louis to visit Sal’s family for Memorial Day. We decided to embark on our trip at 10 pm and travel all night. At one point we were surprised to be caught up between hundreds of trucks in a traffic jam at the Indiana-Illinois border at 2 a.m.!!!! Well, that was a different experience and certainly woke me up. At least it wasn’t raining --that would have been a bit un-nerving for me. For some a 10-hour trip may be an easy trip. Actually the kids do a great job in the car. For us, it is difficult to recover from these trips and I am always paranoid that I am going to forget Isaiah’s meds or something that he needs. Anyhow, we had a very nice, but short visit with Sal’s family. Most importantly the kids had a great time. It had been 4 years since we were able to go down to St. Louis and we were able to see most of the family at various get-togethers this time which was really great.

On the medical front: It has been the “same old story”. The skin really has been acting up. We have been trying so many things. It gets better, then worse and so on. Figures the day we had our clinic visit --it cleared up pretty well. So far it hasn’t come back with a vengeance like it has been. Isaiah’s labs were good and his Hemoglobin is the highest it has been since post transplant. We also were able to wean magnesium pills from 6 per day to 1! This is great. Amazing how 5 pills make a difference. Now if the skin stays pretty clear --we may be able to do some more weaning in a couple months!

And, on another subject I have not really touched upon a few thought…. Life after transplant. Who does one talk to about the nitty gritty it other that other transplant families? It is indeed a unique situation. Who really understands? Do others really want to hear about it? We have been forever thrust into the transplant world
There was a very recent article in the Wall Street Journal, June 9, 2004; Page A1, Next Chapter After Leukemia,
Family Struggles to Define Normal
Jack Streeter, 8, Joins Ranks Of Cancer Survivors
Coping After Treatment
The Challenge of Kickball
By AMY DOCKSER MARCUS. It is about a boy 8 who had Leukemia and relapsed. He had a transplant and his family is struggling to find their “new normal”. Unfortunately, it is a story that is often not told. I would venture to guess that every transplant family can identify with this family’s story in some way.

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Thursday, May 27, 2004 6:16 PM CDT

Thank you for checking up on us! I apologize for another delay in updating.

I’m starting to lose track of post transplant days and too lazy to count.

As many of you know we have been inundated with rain in our corner of the woods. Fortunately we have not had any flooding in our house or any downed trees in out back yard. I did ask the kids yesterday to start working on an “ark”.

On the medical front -- there is not much to say. We will have our next appointment at our clinic in 2 weeks. Meanwhile we are still putting on the creams to get rid of the skin problems. It seems when we miss a daily application --it comes back in the spots where we are applying. From applying creams about once every week to a couple times a day seems like we’re going backwards…. but that’s O.K. We hope that it all clears up soon ---much like we are hoping the weather will too!

The boys are winding down the school year. Mishael actually finished a few days ago and is enjoying the life of leisure. Isaiah about 2 more weeks. It feels like he only got started and now it’s time for a break. He has enjoyed school very much and I think he would not have minded a few more weeks of it. Isaiah has also had the opportunity to participate in Honors Choir after school --which he has considered an honor to be in and has thoroughly enjoyed every minute of it. It seems that he has some moments of feeling “blue” as he put it, and the singing and music brings him “so much joy” as he expressed to me the other day. We just wish he wouldn’t find so many excuses for practicing the piano and violin --which he insists on playing.

We have many camps scheduled here and there for the boys this summer. The church camp that Isaiah particularly wanted (desperately) to attend we decided to postpone. With so many creams and meds we just felt that it was too much to deal with. It interesting how even THAT can hold you back from camp!
Fortunately we will be going there later in the summer and enjoy ourselves all together.

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For our Prayer Warriors --

Please keep baby Jordan in your prayers. He is doing much better now! I’m sure his family can hardly wait to get back home! Jordan’s Journal

We have another little friend at Duke who had a transplant and has officially engrafted!!!!! ! Please keep Spencer in you prayers as new cells vie for their spot and he recovers from transplant. Spencer Rocket

Also, please include brave little Steven in your prayers. He shares the same diagnosis as Isaiah and is really struggling with relapse. Steven Trapp It is an incredibly difficult journey for them.

And also pray for sweet Paige who is suffering from Neuroblastoma. Things are not going well. Paige's Playhouse

THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Friday, May 7, 2004 1:15 PM EDT

528

We’re HOME! It's great to be back safe and sound!

We drove down to North Carolina last week and decided to do it all in one day. The morning we left, our friend Andrew Z from WIOG (FM 102.5) "pulled some strings" to play the song “Survivor” just as we left the house and the sun was coming up in a cloudless blue sky as we headed south. It was a glorious morning. Isaiah loves that song and had no idea it would be dedicated to him (and our family). He raised his eyebrows and smiled as it came on. It was very much appreciated and a great way to start on our journey. Thanks Andrew and see you Sunday at NOON for the Children’s Miracle Network radiothon. Please tune in if you’re in the station’s range (the radiothon started yesterday).

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Everyone was happy to arrive in Durham after a long 15-hour trip. Alex and his family arrived from California the same day so we were able to see each other that very evening. Just to catch you up --Alex and Isaiah met right before transplant and after spending 7 months together we all became great friends --so we try to schedule our trips back to duke at the same time and we stay in the same hotels. Makes visiting much easier!

We visited Mishael’s old school the following day and ran some errands. We all love North Carolina and were so glad to be back for a visit.

On Saturday we went to the Rainbow of Heroes Walk at Duke. It was a cool and rainy morning but it didn’t discourage those who came for the purpose of celebrating life and honoring the memory of those who fought so bravely their individual battles. Undoubtedly the most emotional moment was when balloons were released in memory of our brave little friends.
It was wonderful to see so many of our friends. We sure missed those who were not able to come. All seemed to have a wonderful day despite the clouds, wind and rain. Among many high points was a big surprise (for us) when Mishael was presented the 2nd annual sibling award for being so supportive during Isaiah’s illness and treatment. Mishael got a beautiful plaque and a special Duke pediatric transplant backpack filled with a hat, shirt, vest, and other goodies. We had no idea this was coming! Mishael was just thrilled and I must add it came at a perfect time for him. He needed this little “boost”! He wore everything he could the next day and today he took everything to school for “show and tell”. Thanks to Dr. K and to all those involved at Duke for these special gifts and memories!

For much of the week we tried to fit in as many visits as we could. Carrie H. and family --so great to see you! Loved Jordan’s laughs! Wish we could have had game night --but just couldn’t without Patrick! Kerri Casserio and family --so happy to meet you! Kerri, so glad that we were able to go out for a break with Jill and chit chat a bit. Carrie D. (Isaiah’s Best Buddy when we were down south) was able to get together with the boys to play some games --thanks for coming! Michelle --thanks for coming to the clinic to visit while we waited for our Dr. appointment. It was great to see you all.

Oh, I almost forgot the medical news…

Our labs were all OK. Dr. K and Sue (our nurse practitioner) looked Isaiah over. Overall they are pleased with his progress. He has grown a bit (yay)! His pulmonary test, echo, x-ray were all fine. To the naked eye, there were no cataracts visible in Isaiah’s eyes but we will be having an eye exam soon to see if his vision is still as good as pre-transplant. We are waiting for his DNA test, his donor cells test and some other tests. These are all very important and should be back in a few weeks. As much as we had hoped that his meds would be weaned Dr. K decided not to make any changes except to substitute Voriconizole for another one (Diflucan). This is mainly due dry skin and some ongoing skin rashes that we cannot get rid of with any of the topical steroid creams that we are using. Both Dr K and Sue suspect that it may be some kind of fungal infection and skin GvH so we are treating both. In about 5 days (we hope) we should get a better idea of what the real culprit is. It is very dry and itchy. I was also disappointed when Dr. K said that he will probably have his port in for another year. In about 3 months we will revisit the med schedule and depending on the skin condition perhaps we can start weaning something. We might even have to go down south again for a mini visit. We definitely need to go back in November for his 2-year check up. Wow. All in all Isaiah is still on his road to recovery. We thank God for his keeping us close to Him on this long journey.

The great news (as far as Isaiah is concerned) is that Dr. K said that he could go to amusements parks again!!! --but we need to go when it’s least crowded. He is absolutely ecstatic about this --especially since he is nearing the 50-inch mark which means more RIDES to choose from! Cedar Point and Michigan Adventure --HERE WE COME!!!!

We were sad our visit with Alex and his family came to an end. We are grateful that we had some time to “really” visit this time. We will miss you guys! Looking forward to the next time we meet up.

As we ventured through the mountains of North Carolina, then through Virginia, West Virginia and Ohio we enjoyed the blue skies, and the green grasses that covered the terrain and the flowering trees that dotted the landscape. The scenery really is so beautiful (I just wish the drive was not so long!).

Well that’s about all for now…sorry this is so long.

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For our Prayer Warriors --

Please keep baby Jordan in your prayers. He is doing much better now and gave us some great laughs when we saw him last week! I’m sure his family can hardly wait to get back home! Jordan’s Journal

We have another little friend at Duke who just had a transplant 2 days ago. Please keep Spencer in you prayers as new cells vie for their spot. Spencer Rocket

After I wrote about my being disappointed about Isaiah taking meds for so long and not being weaned from them as I had hoped I was reminded of something this evening. Little Steven, who shares a diagnosis with Isaiah has relapsed again and the pain that the family is going through is heartwrenching. Please keep them in your prayers and/or stop to offer some encouragement if you prefer to do that.
Steven's Journey
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THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Tuesday, April 27, 2004 11:03 PM EDT

518

Spring has finally arrived here!! Really it has (despite that little snow cover we had yesterday!!!)

I apologize for not updating more sooner but it is as if the world has started to spin faster for us.

King Isaiah had a really nice spring break a few weeks ago. He was able to relax a bit which was good for him. Isaiah’s home-bound teacher Mrs. P. came to visit him during the break and he coaxed her into playing a game of chess. He really enjoyed seeing her again. (Thanks Mrs. P for coming over --it was so good to see you!) Later in the week he joined his brother at school for hot lunch and stayed for the rest of the day. The next evening we went to the Olive Garden with Aunt Jane-Jane (my roommate from college), I think it has been about 6 months since we all went out like that and it was nice to walk in the restaurant without a mask! How quickly we have gotten used to Isaiah not wearing a mask! Spring break ended with Isaiah spending 2 entire days with Nana for the first time all by himself. I know he got the royal treatment! They had a great time together and his mission (while there) was to “fix” Nana’s computer (a very old one we had given her). Nana really likes company and she had the perfect excuse to go to the “Original Pancake House’ for raspberry crepes with Isaiah.

Last week it was time to get back to school. The week went by fast. We had our monthly clinic visit and as always hold out breath until the counts come in. Counts were good (whew) and Dr. was happy with how things are going but a bit concerned about a rash that we are having a little trouble controlling. It is not going away easily and looks different from the other rashes he has had. I contacted Dr. K and she said that she will take a look at it when we get to Duke.

Speaking of Duke, we are heading there in a couple days. The boys cannot wait to get there and see everyone. I am still waiting for the packing fairy to come and help me get ready. (Jill, the fairy has still not arrived!!!) We will be staying at the same hotel as Isaiah’s transplant buddy Alex and his family. We can’t wait to see them! Sal and I are looking forward to a little break and change of scenery in addition to looking forward to seeing so many friends.

On a side note: We will be participating in our local CMN (Children’s Miracle Network) Radiothon which will be on Flint/Saginaw area radio station WIOG 102.5 from Thursday, May 6 to Sunday May 9. We are scheduled to be on at NOON on Sunday the 9th at Courtland Center Mall in Flint. Please tune in to hear some very touching stories and if you would like to donate --this is a great cause. (Perhaps you will catch our “montage” too during those 4 days!)

We will update as soon as we can upon our return from Duke.

Thanks so much for thinking of us and checking up on us. Please let us know you stopped by.

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For you Prayer Warriors --could you please add these to your list?

Please keep baby Jordan in your prayers. He is doing much better now and taking fewer antibiotics, but I’m sure that his family would like to go back home again! Jordan’s Journal

We have another little friend at Duke who will undergo transplant next week. Please keep Spencer in you prayers as he has had a very rough go at getting back into remission after relapse. Spencer Rocket

THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Friday, April 9, 2004 8:18 AM CDT

500

Wow, 500 days post transplant!!!

There really isn’t much news from here. We are slowly easing into a more normal life. It is hard to believe that it has been so long since transplant and almost a year since we returned from North Carolina!!

Isaiah has been feeling pretty well lately and we are blessed that he hasn’t come down with anything since he has started school. He is still pretty tired and not getting enough sleep. He wants to embrace too many things as if making up for lost time. Unfortunately, they are important to him (such as music and exercise) but they along with school take up considerable time. We have to push him with his piano and violin practice but when we suggest he quit (at least for awhile) he gets very upset. It’s hard to know which battles to fight.

Other than his skin rashes, he has frequent bloody noses and we wonder where that is coming from. Fortunately they are not “runny” and are easy to control. He is also having some chest pains near his ribs. After 2 weeks of intermittent pain he finally admitted he fell in gym and hurt his chest. If it doesn’t clear up this weekend we might need to look into this a bit more.

Isaiah is really looking forward to his spring break next week. It will give him an opportunity to get some much-needed rest, to catch up on things and CLEAN his room! We will try to do a few special things with him just like with Mishael when he was on his spring break.

In three weeks we will be driving down to North Carolina for Isaiah’s 18-month check up. We will also be walking in the Heroes Walk which is not only a fundraiser for the Pediatric BMT Family Support Program unit but also an opportunity for survivors and families to come together in honor of or in memory of all the brave children who been in the program and bravely fought their disease. We are also looking very forward to this trip and seeing some of our friends down south. We will be meeting with Isaiah’s transplant buddy Alex and his family who are coming all the way from California for their checkup. We can’t wait for a little change of scenery (although I can’t really call it a “vacation”)! Speaking of vacation, we really need that too!!

I will be leaving for a Women’s spiritual retreat today and the boys will be on their own. It’s hard to leave them for the entire weekend but I’m sure they can “fend for themselves”

Thanks so much for thinking of us and checking up on us. Please let us know you stopped by.
I’ll try to update next week.
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Please keep baby Jordan in your prayers. He is back at Duke with a very rare micro-bacteria causing infection. Jordan’s Journal

THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22
Normal

Sunday, March 28, 2004 11:28 PM EST

488 post transplant

Isaiah is discovering that as much as he wanted to go to school, likes school, likes his teacher and new friends --it’s stressful “out there”. (A different kind of stress than he’s used to.) Many of his new obligations coupled with existing ones are proving to be quite a burden. We are trying to work out ways in which to deal with everything that needs to get done, and it is not easy. Isaiah is having trouble focusing on certain tasks and sometimes seems paralyzed and does not move very fast. At least he finished his science project in time to take to school. We all enjoyed very much seeing all the projects displayed at school that evening. There were some really nice experiments! I learned a lot about paper towels and which was rated “a best buy”!!! Who needs Consumer Reports!!!

After a tough 6 weeks since starting school, I think that now Isaiah appreciates even more the “ole” days of leisure at home (with mom) --which are now a distant memory. --O.K., they may be back once summer vacation hits. Well, maybe not all the time. Camps of one kind or another are scheduled during the summer…even FAMILY church camp. We have not gone together to camp since Isaiah was 4! Not only is it a spiritual blessing but also it will be so nice to all go together (and I won’t have to do any cooking!!!!)

In our corner of the world we are enjoying some mild spring weather. It is a nice change from the brutal winter weather that we had. The drawback is that the yard is a mess. It’s muddy and in many spots much of the grass has decided not to grow back. It is a reminder that there is much work to be done outside this spring and a reminder that so many of the winter projects have not been tackled either --Yikes, I am already behind!!

Our Wednesday (monthly) clinic visit was uneventful --for which we are very grateful. Isaiah’s labs were within “his” normal range. We wonder how they will change after he is off most of his meds. Our Dr. here is very pleased with his progress (despite his relentless little skin problems).

We thank God for every new day. Isaiah is nearing 18 months post transplant. It’s hard to believe that it has been that long! Every day is a victory and we pray that Isaiah is farther and farther from any possibility of relapse or other transplant complications.

Thank you for checking in on us! Please let us know you stopped by and than all of you who have recently signed. It really means so much to see that you are still thinking of us!
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Please keep baby Jordan in your prayers. He is back at Duke with a very rare micro-bacteria causing infection. Jordan’s Journal

THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Wednesday, March 17, 2004 11:01 PM CST

+ 479 post transplant

We are doing fine.

Can it be that I am missing the days of isolation?!?!? It seems that ever since Isaiah has started school things have really revved up and life has gotten so busy. I know it sounds absurd but with the boys at two different schools and different schedules it really takes some management skills that I have lost somewhere along the way. Making lunches for Isaiah should be the easiest part of my day but in fact they have become a headache. Perhaps the headache starts when he gets up and can’t eat or think of anything he wants. Of course, with no food in his tummy he can’t take his countless meds (I still don’t now who he can swallow that handful --he has timed himself and can do about a pill a second!!). Anyhow if he doesn't take his meds he can’t go to school. It’s a vicious cycle. Of course none of this is done on purpose --it’s just one of those transplant, radiation, recovery type of things. I sure hope it goes resolves itself soon! And lunches --I put so much in them so that he can have choices of what he wants to eat or better said, -- "can tolerate". I have to push all the time or else he wouldn't eat very much nor would we get out the door to go anywhere.

The highlight of our week was being invited by our friends Dan and Janet LaRose to a Detroit Lions Alumni fundraiser. Dan invited Isaiah to be the guest of honor at this dinner/fundraiser. It is a fundraiser for kids with a good portion going for bone marrow testing. Dan played professional football for the Lions and has done a fabulous job (along with his wife and some others) with fundraising and getting the word about the bone marrow registry and of course putting this great event together. We were so glad to see them again and to be invited to take part in this. (Last year Isaiah was recovering in North Carolina so of course we missed the event). But praise God for the opportunity to attend this year. The boys had a blast trying to sell tickets for the raffle and the silent auction, and “really worked the crowd” in an effort to get things going to raise as much money as possible for this good cause. We met some lovely people (who just happened to sit at our table), dinner was wonderful and there were some neat prizes for everyone. The boys had a grand time. Isaiah slept a good deal the next few days as it seems that school and this dinner event just wiped him out.

Mishael is on spring break and has been getting some special treatment --well, not by Isaiah! I took him out for breakfast yesterday and he had some friends over later and really enjoyed the company and playing with them. It has been so long since he has had anyone over to play with. It was very good for him emotionally and I think they all had fun.
Today he went to Nana’s to spend the night and I’m sure he will have the “royal treatment” while at her house. Come to think of it, it has been a rather “quiet evening at home”.

We will have our monthly clinic visit next week and the GREAT news is that we will not have the IVIG infusion. We are, (for the moment) all done with IVIG!!!! So, we are going in just for a blood draw and a complete checkup with Dr. I will update after our next visit.

Thank you for checking in on us! Please let us know you stopped by as our guestbook is getting lonely!!! We are working on some new pictures!
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THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Sunday, March 7, 2004 10:58 PM EST

This week’s update will be short and sweet! I have lost track of post transplant days --I will have to go back and do some recalculating to get back on track

We have had a rather good week since out last “episode” that I mentioned in the previous update. Isaiah has been feeling pretty well but very tired. We are still having trouble adjusting to school and all the other activities he is involved in. Tennis is almost over, and gymnastics has just begun. It is a challenge to find time to practice piano, violin and to get homework in. Isaiah is trying hard to get more sleep in! We could all use more of that!

He is enjoying school so much but is struggling with all the work that he needs to get through and complete! His days of leisure are over --at least for the moment. At the end of the week he had a new friend over because they had the day off from school. Isaiah was so thrilled to have someone come over to play with him. They both seemed to have a great time together. Mishael also had an opportunity to get in on the “action” when he came home from school --so that was good for him too.

The boys had a bowling tournament today. Sal took them because I had an all day church meeting to attend. I hear that the scores weren’t great, but the boys had a good time and that is the main thing. We have a few more tournaments before the Pepsi tournament in May. We’re all looking forward to that.

So that’s all for the moment --until next week…

Just a reminder…
If anyone in the Flint area would like to donate platelets PLEASE call and make an appointment to donate. The number to call at the American Red Cross is 1-800-YOU-GAVE, ext 308. Please look into it in your areas too if you would like to help. Thanks so much.

Thank you for checking in on us!

Friday, February 27, 2004 11:29 PM CST

Day 450

First of all, I would like to thank all of our transplant families and ALL-Kids families for checking up on us and for your messages in the guestbook. We appreciate it so much. You are all never far from our thoughts and prayers. Please forgive me for not signing the guestbooks lately but this has been a particulary bsuy and stressful time for us --or is it just me??! Now that Isaiah is back in school --at least part of the time I should be able have more leisure time, right!?!? HA!

The week went well. I was thinking that I would be updating with a rather short, pleasant update but …

Tuesday morning, I had to go to school to pick Isaiah up as he wasn’t feeling well. The moment he got home I made him go to bed and get some rest. After about an hour and half of “horizontal” rest --and some hot chocolate he was feeling a lot better and the day progressed normally.

Wednesday was clinic day and IVIG (antibody day). Labs were good --all within a relatively normal range. WHEW! Dr. Inoue was pleased with how he looked and not much of a skin problem visible to the eye. (Of course the “hot [skin] spots” popped up in the evening). The next morning Isaiah woke up screaming. I frantically ran upstairs and he proceeded to tell me that he felt like a truck ran over his head. Well, I’ve never heard that one from him before. He continued crying, shrieking, holding his head etc. I gave him a Tylenol and took his temp. He had a fever so I called the clinic. I talked to Dr. O and after she poses a few questions she says that IVIG has the side effect of headaches. Or, he may be coming down with something because the fever is a rare side effect. I called Dr. K in NC (on another matter) and gave her the latest. She didn’t like the temp part and told me I should have given Isaiah an extra steroid dose first thing. Isaiah had fallen asleep in the meantime so I took his temp. (It’s going up). I woke him and I decided (based on the conversations with the Drs. and the current symptoms) to take him to the clinic for some hydration and cultures. It was really tough to get him going. He was so weak and dizzy. I managed to give him the steroid boost and some other meds. We got to the clinic, and nurse Mary hooked him up quickly.

After about an hour, he started to perk up and wanted something to eat and drink. --a good sign. The last bed on the unit had his name on it just in case he needed to be admitted. Dr. O. examined him for menengial signs (I have been reminded that another side effect of IVIG is meningitis) and she feels it’s not that. (A sigh of relief.) Cultures from the previous day were negative after 24 hours so that’s another good sign. The bed reservation on the unit is just about cancelled. Isaiah claims after 2 hours of hydration that he feels “perfect". What do you mean, “perfect” I asked wanting him to elaborate. He answers in typical Isaiah fashion, ”Well, you know, there are a few times in your life that you feel just ‘perfect’, and now is one of them”. Very interesting I thought. The evening was quiet and the temperature returned but fortunately, not for long. Today was a quiet day for Isaiah as he did go to school but stayed home to recuperate. His body had gone through a lot of stress.

On now to my adventure! I have to mention this because it is important. I had made an appointment weeks ago to donate platelets today. I have been waiting for this opportunity for so long!! They finally opened up an apheresis center here in Flint (at the Amercian Red Cross building) just a few days ago, and I wanted to get right in there and be one of the first to sign up and donate. I was so thrilled to give it a try and could hardly wait. The fact that they were flying in platelets (from Nebraska and other states) for patients in our clinic because of the shortage was just a shame. That's a long wait for platelets when you need them ASAP!! I wanted to do my part. But, upon reading the “fine print” on the consent form, I was SO disappointed that due to some overseas travel in certain European countries in the 1980’s, I am not eligible to donate. I walked out of there practically in tears. I have to go home and calculate it I really did spend 6 months or more overseas during this period.

If anyone in the Flint area would like to donate platelets PLEASE call and make an appointment to donate. The number to call at the American Red Cross is 1-800-YOU-GAVE, ext 308. Please look into it in your areas too if you would like to help. Thanks so much.

Until next week and more adventures.

Thank you for checking in on us and please don’t forget to sign the guestbook!!!! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Wednesday, February 18, 2004 3:48 PM CST

Day 449

We did it! Isaiah started school and I let go!!!!

I didn’t mean to wait this long to update and tell you all about school but I feel like I have been going to school too and it has worn me out!

Isaiah started on Wednesday Feb 11. For some reason I will remember that date well. I went in with him to get him settled in. As you can imagine, he was so happy to go. We showed a video about leukemia called “Why Charlie Brown Why”. The kids were all attentive while watching it. I glanced at Isaiah as he watched. He smiled on occasion but at parts of it he grimaced and poked his back and port area as they were discussing familiar painful procedures. Much to my surprise, I found it hard to watch (and I have seen it numerous times). Memories of the beginning of the journey were flooding in…. After that Isaiah’s teacher, Mrs. D. asked me to give them a little more information and we had a question and answer period. I noticed that there were two boys who had really bad coughs and one of them was going through tissues as fast as I could count them. The thought to pull Isaiah out and head home was whirling in my head, but, I reminded myself that he could probably handle a cold and we have to start somewhere. I LET GO!!!!! I didn’t pull him out and take him home to the “safety net” but left him there! Anyhow, he had a great two days at school and then we were grateful for President’s Day long weekend because he admitted to me Thursday night that he was “dead tired”. Everyone was so nice to him and helpful at school and we appreciate this so much! The kids and teachers were great.

There wasn’t much rest for the weary as on Friday the boys went off to “Special Days (Cancer camp) Winter Camp” for the weekend. I know that this would be another test for his stamina as it would be activity after activity. Nevertheless the boys had a great time and on Sunday we picked them up. Once again I thank the wonderful staff for all they do for these children and the care and dedication they have for them. The camp they rent is pretty but old and needs LOTS of work --but the people who are involved in making these things happen surely make every thing shine for the kids who come. Unfortunately there were 26 kids on the waiting list who wanted to come but couldn’t because it was full.

We come to Monday…The boys had a piano recital in the evening at the Flint Institute of Music. For me, sitting there in that beautiful room surrounded an attentive crowd watching the little boys and girls playing those simpler notes with gentle strokes and little fingers sure brought back some memories. It also reminded me of how “almost normal” things are becoming at times. The familiar faces of parents and children we know, our church family who came to support the boys, and (of course) the best part of the recital for the kids --the reception that always follows were all very calming for both Sal and myself. We are so grateful for so much and we praise God for His blessings.

Oh yes! It has been a week since the first day of school and Isaiah hasn’t come down with anything yet! No colds, coughs or sneezes --at least not as a result of going back to school!! We’ll see if any bugs have found their way to our house after being at camp or in crowds the last few day --WITHOUT a mask I must add!!!!

Just had to let y’all know that I didn’t go shopping to the mall to relieve anxiety like I said I would in my last journal entry. I knew it wouldn’t work. Spending money these days doesn’t help at all and THAT gives me anxiety)! FYI --I would venture to guess that just about all our transplant families are probably fighting insurance bills or a collection agencies --it isn’t a pretty picture.

Until next week and more adventures. We have our Dr’s appointment next week and Isaiah’s antibody treatment, so I will update after that. (Dr. appointments always make me nervous --I can’ t help it!)

Thank you for checking in on us and please don’t forget to sign the guestbook!!!! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Sunday, February 8, 2004 10:36 PM EST

Day +439

Well this is the week I am preparing to let go…again. The subject --SCHOOL!!

Isaiah will be starting school on Wednesday. I am looking forward to it only for his sake. I wonder, will he have the energy? What will he eat? How will he take his meds? Will he be “up and about” in time? Will he get hurt? Will I ever stop worrying? How will I cope?! Will I have to go ‘shopping’ to take my mind of things? How about going to the gym to finally get in shape? I suppose it will all work out --just have to figure how. More about that next week!

Last week the boys went on a GRAND ADVENTURE with Sal to a Father/Son Camp retreat for the weekend. They had a wonderful time up north in Grayling, MI. There was lots of snow, many outdoor and indoor activities, spiritual talks and activities ---and good food. I missed them terribly but managed to get some quiet time in and some relaxation. When they came back Sunday afternoon --it wasn’t long before Isaiah conked out. He slept a lot. In fact, I would say that it took him a couple days to recover from all the events and activity.

Today, since there is still plenty of snow the boys tried some snowboarding at a park near here. Since I dragged myself to the gym for a special “Women’s Day” I did not attend this outing. I hear that it was a cold experience as the wind was cold on top of the hill. They twisted their legs, hurt their (piano) fingers but fortunately didn’t need any first aid! Isaiah said that they “let daddy try once and he wiped out”!

And lastly, medically it ahs been a quiet week. Other than numerous moments of feeling “blah” and really tired, Isaiah is doing O.K. It is a long road to recovery.

Until next week and more adventures.

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For you prayer warriors, or those who would like to stop by the following sites to offer some encouragement here are some children that could use your prayers:

Alex - Isaiah’s transplant buddy is going for special platelet treatments. http://www.caringbridge.org/ca/alexschwab/

Another little friend of ours, Trevor has undergone a transplant is doing very well with spectacular counts --Praise God. We wish him a smooth recovery as he gets stronger and stronger. http://www.tlcontact.com/ServeCarePage?cpn=trevormichaelmaizland/

Here are 2 more sites I would like to mention. Both Justin and Steven share the same diagnosis with Isaiah and have had transplants but they relapsed and are on treatments once again. This is so devastating and they are so strong. It is just such a tough journey. Justin’s Page Steven's Page

Our friend Adam also needs continued prayers. He doesn’t have a website but I would like to say that he is responding well to an alternative treatment (PROTOCEL) and that the Dr. believe he has some major GVL --graft vs. leukemia fighting the bad cells that were coming on post transplant. He is doing miraculously well and we pray that it continues like this.

Also, please pray for Sal’s mother while she is going through chemotherapy and mine as they are trying to figure out the best treatment for her heart problems. Please pray for our family and my dear friend Lisa --whose breast cancer has returned.

Thank you for checking in on us and please don’t forget to sign the guestbook!!!! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Friday, January 30, 2004 11:00 PM EST

Day 430

Snow, snow and more snow.

The boys have spent a lot of time playing outside, digging tunnels and pushing each other into the snow. I suppose that’s what winter is all about. This January snowfall reminds me of the snows I remember as a child. Wait!!!! Not only was that a long time ago, but I lived in tropical climates then! Well,…..l when we visited the States and Yugoslavia in winter there always seemed to be a lot of snow! Mishael had some snow days off this week which he really enjoyed because there was a lot of white material to work with outside --hmmmm, I wonder why they didn’t build a snowman?

We had our monthly clinic visit (IVIG) on Wednesday. Labs were OK. Between our Dr. at the clinic here and Dr. K. at Duke we have discussed that if Isaiah has any more stomach pains like he’s had this past month then we might need to check for gall stones. Also, if his aches persist with his back, hip and knees we need to look to see if there is any damage to the bones from long-term steroid use. I just hope that any aches he is having is from use of muscles he hasn’t used in a long time and that he’s actually strengthening them. Perhaps that is wishful thinking but very possible.

His skin is still flaring up with rashes and dry skin. It actually burns when I apply the mildest creams or the steroid creams except for Protopic. That one seems to work well in taking care of the rashes but is so uncomfortably greasy that I wait until he is asleep to put it on. Since he is sporting these interesting rashes we have not weaned any meds for months. We are looking so forward to cutting down from almost 20 pills a day

We are still planning on sending Isaiah back to school but will push it another week into the second week in February. This way we can tie up some lose ends and prepare ourselves a little more for this HUGE milestone. Did I say, “prepare ourselves” --perhaps I should have said, “prepare myself”! We don’t know how much stamina Isaiah will have physically, but mentally he is already setting his goal of “no grades under A-“. I’m glad they don’t give grades for homework completion, because if we averaged it with his GOAL grade --we might end up with a much lower average.

I wanted to thank all of you who visited us via Kendrie’s site and left wonderful messages in our guest book --they really are so appreciated. I will reciprocate to those who left their sites when I get a chance.

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Wednesday, January 21, 2004 10:36 PM EST

Day 421

Where does the time go? So much for my New Year letters that I was going to send. Perhaps I will try a “Christmas in July letter”!? If I get started now, perhaps I will be done by July!

We’ve had a relatively smooth time since our last journal entry and I thought there wouldn’t be any viral bugs to talk about this time, but little did I know that he would vomit 6 times (the number keeps on going up as I write this) tonight and cry out with stomach pains --like the ones he had a few weeks ago. I hope that it isn’t a long night. We always wonder if the issues we run into are normal childhood aches and pains or something else. He has also admitted to having hip pain for some weeks now and that’s another thing we will have to discuss at our clinic visit next week.

Isaiah is continuing with his Homebound School Program with Mrs. P. That is going well. He did stop by the school for some testing last week so that his homeroom teacher would know where to place him once he starts back. Since the school has not really been hit with the flu, we have decided to start getting Isaiah ready to go back in early February, which is right around the corner!!!! We doubt that he will be ready for a full day of school every day, so we will be working that out with the teacher and we have to really play it by ear.

We have had about a foot of snow in the last week and it is the beautiful picturesque kind of snow. The evergreens look like they have snow spayed on them and the fields are while with a thick covering. The boys have thoroughly enjoyed playing outside and have spent many hours in the snow despite the very cold temperature. We managed to go to the snow hill for some sliding down the hill. It sure brought back memories of taking the kids there when they were little and having to go down with them so they wouldn’t get hurt. Now they can handle the plastic gizmos by themselves although I did go down with them a few times as well. What cold fun!!!

I will sign off now-- and yes we did change the pictures!!!

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For you prayer warriors, or those who would like to stop by the following sites to offer some encouragement here are some children that could use your prayers:

We were deeply saddened by the news that Marcus passed away on January 14. His mother Teresa is trying to be so strong (and is amazing) but is devastated. Marcus was, like all the children that go through horrible journey such a trooper and champion. He will be sorely missed.

http://www.caringbridge.org/mn/markie/

Alex - Isaiah’s transplant buddy went to the clinic today and his platelets fell suddenly today. We don’t know why yet.

http://www.caringbridge.org/ca/alexschwab/

Another little friend of ours has undergone a transplant and was released to go home yesterday --Praise God. We wish him a smooth recovery as he gets stronger and stronger.

.
http://www.tlcontact.com/ServeCarePage?cpn=trevormichaelmaizland/

Out friend Adam is also needing continued prayers. He doesn’t have a website but I would like to say that he is responding well to an alternative treatment (PROTOCELL) and that the Dr. believe he has some major GVL --graft vs. leukemia fighting the bad cells that were coming on post transplant (yes, that’s right --after transplant). He is doing miraculously well and we pray that it continues like this.

Also, both Sal’s mother and mine have recently been to the doctor and both have very serious health issues. Sal’s mom has colon cancer and mine has some serious heart problems. The doctors are figuring out exactly how to treat. Please pray for our family.

Thank you for checking in on us and please don’t forget to sign the guestbook!!!! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Sunday, January 11, 2004 6:49 PM CST

Day +411

O.K. --It’s the New Year and we’ll start with some good news.

Isaiah’s immune system tests have finally come back and our Dr. and nurse have interpreted them and given us the great news that Isaiah can go back to school!!! However Isaiah (as much as he can hardly wait to go to school) has decided that he doesn’t want to be exposed to any “flu” and wants to wait awhile longer. At least that’s one battle with him that we don’t need to fight. So, we are back to Home Bound instruction (which Isaiah enjoys very much) with Mrs. P. but the homework battle has begun (again).

On Wednesday we went it to recheck Isaiah’s liver/muscle enzymes. The week before they were unusually high and we had scheduled another test for the following week to see if they would fall back to normal levels. In the last journal entry I had talked about his getting ill about 30 hours after his counts came in. Well the lab results were back to normal and I am convinced that the elevated enzymes had predicted this little viral episode. We are so grateful that it appears that this is all it was. Isaiah was tired for days after this episode but was back to his old self.

Then, fever hit again. Like in the Limbo dance my question was “how high can it go”? There were no symptoms except feeling hot, no congestion, no nausea. We decided to wait it our and note down the temperature frequently. It went up to almost 102 and then in the next hours started coming down. By morning it was a low-grade fever.

To make a long story short, Dr. Kurtzberg wanted Isaiah to go in to see our Dr for a complete exam, have a culture done and get a chest X-ray ASAP. We went in about 3:00 and are so grateful at how accommodating our clinic always is --especially on such short notice and on a Friday afternoon. They were, as always, wonderful.
Oh yes--the results of the X-ray were negative and Dr. Inoue felt that there might be a “little virus running around” because he didn’t see anything suspicious. Lungs were clear and sounded fine.

Well, as if normal childhood activity isn’t enough, there really aren’t too many dull moments. Temperatures and viruses and this time of the year are so common. But, for us in relation to Isaiah, even a temperature and not feeling well, or a pressure headache, will send thoughts racing and brings the “worry” right to the forefront in a split second.

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On another subject, the high point of the week was deciding, on the spur of the moment to go out to breakfast after clinic on Wednesday. Isaiah is still very “selective” about what he eats and we are back to Fritos, beans and a bit of shredded cheese on top. This is the standard once again. Certain food smells make him feel really nauseated. (I think we have surpassed the “70 cans of refried beans” mark --it’s more than being a choosy kid --I believe that it is transplant related). Anyhow, we ventured to the Cracker Barrel --and would stay there only if not busy. (It wasn’t.) Isaiah was just thrilled to give it a try, as we haven’t been there for a few years. He had pecan pancakes and was one very happy young man who enjoyed his breakfast immensely. So did I. But most of all I loved watching him so content and grown up as he ordered off the menu.

Mishael seems to be going through a pretty rough period right now of trying to find his place in the whole scheme of things. We are really seeing some very different kinds of behaviors (not positive) and are having a bit of trouble knowing how to handle it. I think that the past three years have really affected him greatly and now it’s coming to a head. He doesn’t want to talk to anyone about any of this. He sobbed the other night for hours. Tomorrow he has a ½ day of school. On our way home he and I will be stopping at Subways for a veggie sub. That was his request for his special lunch (and treat).
I guess I will close for now.

Thank you all for your love and prayers.

~~~~~~~~~~~~~~~~~~

For you prayer warriors, or those who would like to stop by the following sites to offer some encouragement here are some children that could use your prayers:

Marcus is still going through some treatments and his family is trying to find a facility that will treat him as he relapsed a little over 100 days post transplant. His mom is trying to be so strong but it is something very difficult to deal with.

http://www.caringbridge.org/mn/markie/

Alex - Isaiah’s transplant buddy is still working on getting his platelets nice and high and getting his immune system revved up again!!!

http://www.caringbridge.org/ca/alexschwab/

Another little friend of ours has undergone a transplant and was released to go home yesterday --Praise God. We wish him a smooth recovery as he gets stronger and stronger.

.
http://www.tlcontact.com/ServeCarePage?cpn=trevormichaelmaizland/

Out friend Adam is also needing continued prayers. He doesn’t have a website but I would like to say that he is responding well to an alternative treatment (PROTOCELL) and that the Dr. believe s he has some major GVL --graft vs. leukemia fighting the bad cells that were coming on post transplant (yes, that’s right --after transplant). He is doing miraculously well and we pray that it continues like this.

Also, both Sal’s mother and mine have recently been to the doctor and both have very serious health issues. Sal’s mom has colon cancer and mine has some serious heart problems. The doctors are figuring out exactly how to treat. Please pray for our family.

Thank you for checking in on us and please don’t forget to sign the guestbook!!!! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Sunday, January 4, 2004 1:15 PM EST

Just wanted to give a brief update and let you know that Isaiah recouperated quickly from his upset stomach and temperature. As the day wore on he got better and better and his fever went down. He only had one Tylenol. We were so happy. He did feel a bit weak and tired but by now is back to normal. Now I am very curious to see if the liver enzymes are back down. Was this related to last week's elevated numbers? Did they predict that there was something viral going on and we saw the symptoms about 24 hours later? We'll see.

Right now we are anxiously awaiting the arrival of the snow storm! If it comes any later and in the quantities predicted I'll bet that school will be cancelled tomorrow. We need some snow now to get it our of our system --don't want snow in March!!! Gotta get some sledding in!!!

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Friday, January 2, 2004 6:34 AM CST

Day 403

We wish you all a blessed New Year!!!

We have had a really nice holiday season very quiet and relaxing. The boys really enjoyed Christmas and were not only happy with the gifts that they got but we were all thrilled that it snowed right on Christmas Day and when we woke up there was much more snow than a mere dusting!!! It was beautiful.

Medically speaking our holiday has not been as quiet. A little less than a week ago Isaiah woke up in the middle of the night with excruciating pains. They lasted about 1 ½ hours and he was writhing and shrieking almost the entire time. We knew it had to be awful as he is quite tolerant to pain and doesn’t say much unless it gets really bad. We called Duke and our local Dr. --but the page didn’t go through. Just as I was ready to call our Dr. at home, Isaiah finally fell asleep. We decided to wait it out and see how the day went. He gained energy throughout the day and by afternoon felt better and better --the pains didn’t return.

Thursday was our monthly clinic visit. The timing was great, as I have to admit that the previous episode did make me nervous and wanted to see if there was any reason for it that we were not seeing. The IVIG infusion went well and most of his counts are stable (as they have been for months now) except that his ALT and AST --which are numbers on his Metabolic Panel. These are enzymes that usually relate to the liver. They are much higher than they should be. Fortunately his bilirubin is normal so that is a good sign. We will be going in next week to recheck the numbers and see where they are. So far, what it means is that there may be something viral going on or GvHD of the liver.

There hadn't been any changes in activity or any symptoms until late last night. We went to my cousin’s house for the evening. Isaiah told us that he had a headache (and in fact had it all day!). See, this is what I mean. He doesn’t say anything until it gets bad. I ask him how he feels numerous times a day but can only bug him so many times a day!! We gave him a Tylenol and he appeared to feel better. A few hours later he looked very pale and tired. Since it was getting late, we packed up and headed home. He fell asleep on the way home and we transferred him to his bed. At 1 a.m. he woke us up, and, in no time vomited. We had the bucket ready because (thankfully) he warned us. I was so grateful for the warning because if "it" had “landed” on the carpet --we all would have been SICK -yuk!!! Anyhow at 5:15 a.m. we took his temperature and it is 101.6. Oddly enough we are used to so many symptoms of his illness and transplant but not TEMPERTURE and HEADACHES. It is a combination that we just don’t like.

I have emailed Dr. K. and will call our clinic shortly. He is now sleeping but still very hot

I will update when we know more…

Thank you all for your love and prayers.
~~~~~~~~~~~~~~~~~~

For you prayer warriors, or those who would like to stop by the following sites to offer some encouragement here are some children that could use your prayers:

Marcus is still going through some treatments and his family is trying to find a facility that will treat him as he relapsed a little over 100 days post transplant. His mom is trying to be so strong but it is something very difficult to deal with.

http://www.caringbridge.org/mn/markie/

Alex - Isaiah’s transplant buddy is still working on getting his platelets nice and high…

http://www.caringbridge.org/ca/alexschwab/

Another little friend of ours is undergoing transplant recovery as I write this he and his family sure could use some prayers.

.
http://www.tlcontact.com/ServeCarePage?cpn=trevormichaelmaizland/

Out friend Adam is also needing continued prayers as he is having some post transplant complications --he doesn’t have a website. I would like to add that Adam seems to be responding well to his new alternative treatment (and conventional treatment) and is miraculously doing well. The doctors are “stumped”. (My words).

Also, both Sal’s mother and mine have recently been to the doctor and both have very serious health issues . I will go into more details in my next update as we learn more.

Thank you for checking in on us and please don’t forget to sign the guestbook!!!! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Tuesday, December 23, 2003 10:42 AM EST

Day 393 ----WE WANT SNOW!!!!!!!! :-)

I apologize for the delay in updating. It has just gotten too busy around here. I have not gotten any Christmas cards out and my boxes sit patiently in the corner waiting to be sent. It will have to wait until next year.

On the medical front, there is not much to report once again. The skin condition is just not going away. In fact, it is getting rougher and scalier. The rashes on the outside aren’t too bad but the fact that there’s something going on on the inside bothers me a bit more. Next week we have a clinic checkup, some IV antibodies and labs. We will see what the Dr. says.

The news of the week is that Mishael and Isaiah finished their bowling season and we had the banquet last week. Their 3-boy team placed somewhere in the middle of about 10 teams and we were happy that they had a wonderful time bowling this season. Then came the moment to announce the most improved bowlers. Mishael and Isaiah both got a trophy for some kind of high series (specifics escape me at this moment) and most improved bowlers. We were pleased that Mishael had some good scores earning him a trophy because Isaiah usually has the highest scores. Anyhow, the real high point was when the boys qualified for the Pepsi State Bowling Tournament next May in Battle Creek.

I have to admit that I got “a little choked up”. No, I wasn’t a “proud” mom but a happy one and I kept on thinking, “My, how far he (Isaiah) has come”. We are just so happy that Isaiah is ABLE to bowl and that he has such a passion for so many things and wants to do his best. It’s so much more than about scores and pins --but about desire, persistence and perseverance. Another lesson I’ve been reminded of by an 8 year old. We are looking forward to more bowling next season (January) and the boys will even try their “hand” at tennis in a couple weeks.

We would like to take this opportunity to wish you all a Merry Christmas, Happy Hanukkah and a lovely holiday season. We remind ourselves that it’s really a time to share with friends and family and remember the reasons we are celebrating the holidays. For us, it is about the birth of Christ the Savior and the HOPE that He gives us. It is also about sharing and giving…

Thank you all for your love and prayers and for being a part of our lives. Some of you we will never be able to thank enough but please know that we appreciate you so much --words will never be enough to express how and what we feel.

~~~~~~~~~~~~~~~~~~
For you prayer warriors, or those who would like to stop by the following sites to offer some encouragement here are some children that could use your prayers:

Marcus is still going through some treatments and his family is trying to find a facility that will treat him as he relapsed a little over 100 days post transplant. His mom is trying to be so strong but it is something very difficult to deal with.

http://www.caringbridge.org/mn/markie/

Alex - Isaiah’s transplant buddy is still working on getting his platelets nice and high…

http://www.caringbridge.org/ca/alexschwab/

Out friend Adam is also needing continued prayers as he is having some post transplant complications --he doesn’t have a website.

Thank you for checking in on us and please don’t forget to sign the guestbook!!!! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Friday, December 12, 2003 9:05 PM EST

Day +381

On the medical front, there is not much to report! IsaiahÂ’s skin is looking better, energy level is good, hair is growing --but much to IsaiahÂ’s disappointment itÂ’s different than his old hair. He doesnÂ’t care much for the curls nor the spiked look it tends to form as it has a mind of its own at times! WeÂ’re still waiting for the immune system test results. We are trying to be very careful about our exposure to the flu --so Isaiah is still wearing his mask every time he goes out.

Swimming lessons are done and weÂ’re pleased that Isaiah made big strides and is able to swim, float, dive for sinking objects and have some FUN in the pool. It has been such a positive experience. Sal has taken the boys swimming numerous times and they have enjoyed swimming and playing around with Â“daddyÂ”. Isaiah is still as passionate about bowling and is dreaming of qualifying for the state Pepsi tournament held next spring. Unfortunately, the last 2 weeks were qualifying weeks and his scores were not as high as he would have liked so we will wait patiently to see if he will qualify.

We are getting ready for Christmas and in usual Bingham style havenÂ’t really made any major plans --like going to Hawaii, California or Florida. Instead we will be content to spend our holidays at home or nearby at NanaÂ’s house.

I have dug into the Christmas decorations and enjoyed every moment of unwrapping the ornaments, searching for that certain decoration and loved the sparkle of every light strung up. I even treated myself to a couple new strings of novelty lights --I could not resist the elegant poinsettia lights and the whimsical snowman lights that make me smile every time I turn them on or look at them. Yup, itÂ’s an inexpensive thrill that makes me feel good!!!

I re-discovered the Christmas crafts that Mishael and Isaiah have made during the past few years and enjoyed finding them even more this year. Those gingerbread ornaments still smell wonderful! What about those ornaments with the baby pictures -theyÂ’re great!!! I remember two years ago, as I was putting the decorations away, I had a thought in my head that I just could not get out of my mind. It made me very sad, even though (at that time) I had no Â“realÂ” reason to keep on thinking this wayÂ…I kept on wondering if Isaiah would live to see next Christmas. It just kept Â‘playingÂ’ over and over in my head. It was really awful. Well, Isaiah did see the next Christmas --although in somewhat of a blur for him and for us. But we did get the best Christmas present ever when we were released the day after Christmas to go back to the apartment in Durham to continue recovery.

So, here we are almost a year later. Isaiah pulled me aside a few weeks ago with a deep concern. (None of our decorations had been put up nor had we gotten anything out --so I wondered where his thought was coming from). He told me that he didnÂ’t think the way most people get caught up in shopping and gift giving is really the way to celebrate Christmas, which (he thought) is really supposed to be about Christ and the events surrounding His birth. I agreed with him --we talked a bit more and then I asked him Â“does this mean we shouldnÂ’t get you any gifts?Â” He thought about that for a bit and answered Â“well maybe a fewÂ”. He has not asked for anything specifically for Christmas --well until today. We were having our usual morning chitchat and then came his special request for a Chia Pet!!!! Yes, thatÂ’s right, his Â“ownÂ” Chia Pet. I thought that was pretty funny and had my laugh for the morning. Mishael, on the other hand has made numerous Christmas requests (after I asked him to give me some ideas) and I must admit I canÂ’t really remember anything he asked forÂ…

We hope that as you get ready for this holiday season whether Christmas, Hanukkah or your special celebration that you enjoy every moment and share many precious memories with each other.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

For you prayer warriors, or those who would like to stop by the following sites to offer some encouragement here are some children that could use your prayers:

Marcus who is close in age to Isaiah just relapsed at a little over 100 days post transplant. His mom is trying to be so strong but it is something very difficult to deal with. There are other complications to deal with too.

http://www.caringbridge.org/mn/markie/

AlexÂ’s platelets are rising with his latest medication to help with that issue, but his hemoglobin is not as high as we would like.

http://www.caringbridge.org/ca/alexschwab/

Thank you for checking in on us and please donÂ’t forget to sign the guestbook!!!! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

Â“Cast your burden on the Lord and he will sustain you.Â” Psalm 5: 5:22

Wednesday, December 3, 2003 6:02 PM EST

Day 372

Yahoo!!!!!!!! Some of the blood test results are in!!!!!! 100 percent donor cells and no trace of the translocated chromosome (at least in the 200 “interphase nuclei” tested). This is great news! We have much to be grateful for.

Today was our monthly clinic visit and an infusion of IVIG. We are hoping that this will offer Isaiah some protection from any viruses, as he is not getting the flu shot this year. All labs were stable along with weight and blood pressure. We worried a bit about blood pressure as he has been experiencing some dizzy spells. Not sure where that’s coming from...

On the Wednesday before Thanksgiving we celebrated Isaiah’s re-birthday (his one year anniversary since transplant). We didn’t do anything special on that day as Thanksgiving was the next day and we had Mishael’s birthday a few days after so there was much going on. Thanksgiving was spent at my cousin Becky’s house. As always, when visiting with them we had a lovely time. She and her husband Carl have 3 of the nicest teenagers. See, there is hope for those teenage years! Our boys love going over there because there are so many video games to play and they know that they are not limited that day --except when it is quitting time to go home.

The boys participated in a little Thanksgiving program at church that our Pastor’s wife organized. They really enjoyed the whole thing and took learning their lines very seriously. It was a good opportunity for the boys to interact with some other children but most of all reflect upon a little history and the blessings that we have.

Mishael celebrated his 10th birthday with a party this year! Last year I took him Bob Evans for breakfast as Sal and Isaiah were in the hospital so we promised him that next year we would have a party with some of his friends. Mishael chose to go to the newly renovated Children’s museum in Flint and we had a pizza party with friends. It was a beautiful sun shiny November day. Perfect for a celebration. All the kids (and adults) seemed to have a great time. By Sunday evening Sal and I were glad the week was OVER!!!!

Unfortunately I must end on a sad note. Our little friend Tommy Bennett, who had undergone his third transplant passed away last week. He was buried yesterday in California. It has been a most difficult time for his family. The same disease also affects his two older siblings --so it is a real struggle for his parents. If you would like to visit his site and offer some support or your prayers it would be much appreciated.

http://www.caringbridge.org/ca/bennettboys/

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

For you prayer warriors, or those who would like to stop by the following sites to offer some encouragement here are some children that could use your prayers:

Marcus who is close in age to Isaiah just relapsed at a little over 100 days post transplant. His mom is trying to be so strong but it is something very difficult to deal with. There are other complications to deal with too.

http://www.caringbridge.org/mn/markie/

Alex’s platelets are rising with his latest medication to help with that issue, but his hemoglobin is not as high as we would like.

http://www.caringbridge.org/ca/alexschwab/

Thank you for checking in on us. Please let us know you stopped by --we love to hear from you!!! Don't be shy!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

THANK YOU so much for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Monday, November 24, 2003 10:49 AM EST

Day 363 ********* ALMOST 1 year since transplant!!!!!!!!!!!!**********

Isaiah and I returned from Duke safely and soundly last Thursday evening. Sorry not to have updated sooner but it has been such a busy time for us and I have to admit that both Isaiah and I are exhausted from our trip --not to mention the “catching up” we had to do once we arrived home

First I will update on the medical information because I know some of you are anxious to hear the results. Nurse Sarah took numerous tubes of blood on the first day. The blood results for the f donor cells and any presence of the Philadelphia Chromosome will come back in 2-3 weeks. It is always such a long wait for these results. Immune system test results will take up to 5-6 weeks. The CBC (complete blood counts) and chemistries were all within normal ranges except for magnesium and phosphorous. Isaiah still has trouble hanging on to those. His pulmonary test and echocardiogram showed improvement from last time. The thickness of his heart left ventricle has subsided a bit so this is good news. His previous chest x-ray showed potential osteopenia (a precursor to osteoporosis) and now that seems to have been corrected (perhaps with the big doses of calcium --he loves those Viactives®!!!)

He has GvHD on his tongue and slight skin GvHD. It doesn’t warrant increasing any steroids. Dr. K. feels that it should “burn itself out” in time. I was disappointed that we did not reduce any medications except the blood pressure medicine which we discontinued. We will keep an eye on his blood pressure to make sure that it doesn’t get too high. The plan is to remain on most of the meds for another 6 months. This includes continuing the IVIG (antibodies) for another 6 months. This will offer him some protection similar to immunizations. Dr. K is very pleased with Isaiah’s progress but would like to see him in another 6 months. We were hoping that it would be a year. As far as restrictions lifted --there really aren’t any major changes. No big crowds, no professional sports events especially during this flu season. After we get the immune system tests back, we can determine if school is an option in January. Isaiah would just love to be able to start school and I know would be disappointed if he can’t go back yet. We have talked to him about the possibility of a delay and he said he “can deal with that”. He’s such a trooper. As far as roller coasters --that is still an emphatic NO. We’ll try that question again but I know that Dr. K would be happy if he never got on a coaster again!! Ohhh that would really be a tough one to avoid!

Pat and Isaiah’s adventure to Durham.

We boarded our Angel flight with our favorite pilot Dick on Sunday (the 16th). We flew through some clouds and Dick changed altitudes to get the smoothest ride knowing how easy it is for me to feel nauseated. On our way we stopped in Clarksburg, West Virginia to eat lunch. I had wanted to try this little “retro-looking” airport restaurant for some time now and here was my opportunity!!! The lunch was certainly memorable --actually for me it was and I will never eat a veggie hoagie again!! On the other hand, Isaiah raved about the key lime pie, so he was happy. We were on our way again and a few hours landed in Raleigh after dark, to the beautiful sight of the twinkling lights of the city.

We met up with our good friends the Kings --visited for a bit and then went to our hotel. Isaiah loves staying at this particular hotel, but this time the experience wasn’t that good and I don’t think we will be back. Anyhow while there, we visited with the Kings some more, went out to dinner with them, and of course Isaiah somehow managed to fit in Pizza Hut personal pan pizza every day!!! We went over to Carrie (Isaiah’s Best Buddy from when we were here) and Mike’s house and played some games.
Monday and Tuesday was mostly testing at the hospital and our check-up with Dr. K. We visited the Bone Marrow floor and saw Alicia and John. Tommy is not doing well. Please check his web site below --they really need prayers as I write this.

We visited the new lounge on the Pediatric BMT floor which is really incredible. We were grateful they even had a lounge on the floor when we were there last year --but now it is really beautiful and so practical. Isaiah played in there for quite awhile and I was able to visit a bit with nurse Lori and Emily, the Child Life Coordinator (both who made our stay so much easier). We took some pictures with Marion Kalbacker (one of the social workers) and caught up with familiar faces.

On Wednesday our flight home was delayed because of the storm system so we stayed an additional day. It rained “cats and dogs” so it was hard to find something to do. In the evening we visited with Carrie again and then went over to the King’s house and bid our goodbyes and of course --play another game. We managed to amuse ourselves somehow and the day went by quietly.

Thursday morning the sky cleared and the blue was vivid against the red and gold leaves that glistened in the sun still wet with the rain from the previous day. It was a glorious day and perfect fro flying home. I’m glad we waited a day. It just felt “safer”. About an hour into our two and half hour flight, Isaiah asked if we could land quickly. Apparently it was a “tummy trouble stop”. Dick quickly found a nearby airport, changed the flight plan and before we knew it we were landing (somewhere in Virginia) on this landing strip surrounded by huge trees, and water, inlets and a strip of sandy beach winding around all the different inlets. The water was a dark blue and smooth as ice. There were no houses around for miles. The view was just spectacular and the nature nothing quite like anything I’d seen before.

We landed and went into the “office” which was actually IN someone’s house, got gas and soon were up in the air again. I really appreciated this stop --in the middle of nowhere, because it gave me a view of life and terrain that is just embedded in my mind. God’s magnificent creation. Just another of His masterpieces.

We arrived home safely and picked up where we left off. Mishael seemed to have enjoyed his special time with Daddy while we were gone. He also hade a dinner appointment including a birthday stop at Toy R Us with our friend Linda. He enjoyed bowling without Isaiah’s competition and raved about the Thanksgiving lunch at school (which we missed by a day). Mishael is going to be 10 this week and Isaiah will be celebrating his 1st "re-birthday" as we call in our new world --the Transplant world. We will be doing some celebrating this week!

It is for us, very appropriately, the week of Thanksgiving. We have so much to be grateful for. However, we have shared so much sadness with so many this past year. It is indeed bittersweet, and we have been forever affected by these children, the families and friendships with those with whom our paths have crossed.

Before I sign off, I wanted to mention the organization that has been so helpful to us. I have mentioned Angel Flight http://www.angelflightamerica.org
many times this past year. There was a very nice story on the Today Show last week (by Katie Couric)--actually the morning we were coming home. Please take a moment to learn more about this wonderful non-profit organization. http://www.msnbc.com/news/994666.asp /
The story is under “Who we admire: Friends with wings”.

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For you prayer warriors, or those who would like to stop by the following sites to offer some encouragement here are some children that could use your prayers:
Tommy’s is:
http://www.caringbridge.org/ca/bennettboys/

Baby Jordan is having some bumps in the road again:

http://www.caringbridge.org/il/jordan/

Alex’s is:

http://www.caringbridge.org/ca/alexschwab/

Thank you for checking in on us. Please let us know you stopped by! Please DON"T be shy about signing the guestbook! We love to hear from you!!!
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THANK YOU for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Saturday, November 15, 2003 11:48 PM EST

Day +355

Our week has really been busy. I don’t know where the time goes but here we are the night before our trip back to Durham. It’s almost as if in the blink of an eye it’s time to go back.

We just had a major flare up of the skin GvHD and few minutes ago. It was itchy, painful and dry. It could be from swimming this evening that it has been aggravated. He was once again shrieking and crying because it stung and itched so much. He said it never felt so bad. Finally he’s asleep. I guess we have to pay much more attention to the skin or else we could really run into some trouble.

Isaiah has had a pretty good week. Despite some foot pain, ear pain and dizziness (where does all that come from??) he managed to bowl a high game --his personal best of 140 (for another over 300 series). He told me he had to “raise his average” in order to “help his team” because he would miss bowling this coming week due to being at Duke. He’s always doing some kind of calculating in his head. In fact he often says, “according to my calculations…” and then throws me for a loop with what he says. He’s too funny sometimes.

We are continuing with his swim lessons and I cannot believe how far he has come in just three short lessons. He can now swim a bit and even has no fear throwing items in the water and going down to retrieve them at over 3 feet. This is a kid who didn’t like to get his face wet! Wow, he is really enjoying these sessions, getting some exercise and that makes a mom feel good!!!

After his last swimming lesson, some boys about his age came to swim. Before you knew it the three of them were playing in the water, huddling together to plan a strategy and conspire against one of the mom .in keeping the ball away from her. Finally he had some friends to play with and was having such a great time! After an additional hour I managed to get him out of the pool --after all we HAD to get going. As my mother wisely said of his playing and me worrying about all I had to do, she said “there’s nothing more important at this moment than his playing in the pool”. She was right.

We are leaving for Durham on Sunday the 16th. Isaiah has repeatedly told us that he can’t wait to “go to N.C” to see his friends. (He will miss his friend Alex but he knows we’re going to try to see them another time in the near future). He is looking forward to his pulmonary test --he loves to imitate (with fondness) Marie the lady that does the testing. --Especially when she tells him to “breathe like a puppy dog” in her southern accent. He just loves when she says that!

He has talked about the Personal Pan Pizzas he will eat and reminisces about some of the good times we had while in Durham. He will greatly miss some of our friends that have left since we were last there --Pat and Carrie --it just won’t be the same!!! We hope to see you soon here in the Midwest!

We had asked Mishael if he would like to come with us but he doesn’t want to miss school and have all that homework to make up. Of course he didn’t want to miss the Thanksgiving feast on Wednesday at noon at school. He also is thrilled to have “Daddy” all to himself and already has a date with Nana on another day and our friend Linda yet at another time. He’s booked!!

Well it’s time to start packing. Please keep us in your prayers. We have some very sensitive blood tests coming up and we are always nervous while we wait for the results. I plan to update at the end of the week.
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For you prayer warriors, or those who would like to stop by the following sites to offer some encouragement here are some children that could use your prayers:

http://www.forcody.org/

Please continue to pray for Tommy and Alex and all our transplant friends.

http://www.caringbridge.org/ca/bennettboys/

http://www.caringbridge.org/ca/alexschwab/

We will update when we come back.

Thank you for checking in on us. Please let us know you stopped by --we love hearing from you.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

THANK YOU for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Monday, November 10, 2003 11:40PM EST

Day 349

The leaves have floated off the trees and the chill is in the air. Fall is turning into winter. The clubhouse in the back looks lonely, but it is just too cold to climb in there. We spent hours yesterday and today picking up leaves. The boys were (for the first time) a great help and they were cheerful!! Perhaps it was the incentive of a few dollars that helped. They really earned their pay by being such good helpers!!

Last Thursday, we had our monthly clinic visit. Sometimes a month (between visits) seems like such a long time!! I cannot tell you how nervous I get when we go in. In fact, there are so many times in a week that my heart drops for one reason or another. We have had some suspicious things going on with Isiaah’s skin and some headaches (which are now gone). Constant hedaches are a potential sign of trouble. Counts were similar to last month’s and as we weaned the steroids again we have not seen the rough “alligator skin” that saw last time when we were at this level. He had his IVIG and we were done in half a day.

Yes, we’re pressing closer to a year post transplant!!!! In fact, on Sunday the 16th we are heading via Angel Flight (and our favorite pilot Dick), to Duke for our check up and one-year tests. Please keep us in your prayers if you would. We are all very disappointed that we will not be able to see Isaiah’s transplant buddy Alex and family as planned. Alex is not able to fly commercial at this time and is being treated at his home hospital and is very immuno-supressed at the moment. Our trip just won’t be the same without seeing them and some of our old friends.
We promised the boys we will try to meet somewhere in the near future. Hmmmm, Hawaii would be nice…

We got a package a few days ago! It was from our friends at Cedar Point --one of the best amusement parks in the world! Thank you folks so much!!! We really appreciate it!!! I wasn’t sure if you were still following our journey but I see you are. When the boys saw they both had “mail” and where it was from --they just shrieked in delight. Of course having it addressed to both Mishael and Isaiah so nice. They got some neat goodies from the office --pins, pictures, CD’s depicting the newest rides and of course the statistics about almost all the rides. Of course, Isaiah sat down to “study” the sheets right away and ran down to plop the CDs in the computer to see what was on them.

Some of you might remember that we have seen our share of amusement parks in the past couple years. Isaiah is a real thrill seeker and some of those BIG rides have taken his mind of some of the toughest part of his protocols. At our 6-month visit with Dr. K. just before we moved back home in May, he had two questions for her. Can he go bowling and can we go to amusement park. The answers were yes and no respectively. We didn’t ask why regarding the amusement parks but I bet the question will come up again next week. We have to get on another roller coaster soon!

That’s about all for the moment. We will have a busy week getting ready for our trip downto North Carolina. I sure hope it's a bit warmer there!!! I will try to update before we (Isaiah and I) leave.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
For you prayer warriors, or those who would like to stop by the following sites to offer some encouragement here are some children that could use your prayers:

http://www.forcody.org/

Please continue to pray for Tommy and Alex and all our transplant friends.

http://www.caringbridge.org/ca/bennettboys/

http://www.caringbridge.org/ca/alexschwab/

Until next time. Thank you for checking in on us. Please let us know you stopped by --we love hearing from you.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

THANK YOU for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Sunday, November 2, 2003 11:55 PM EST

Day 342

We are still nursing Isaiah’s cold, which is lingering, but we expect it will disappear soon. This week Mishael was sick with a high temperature and missed school. Sal was sick too but he didn’t miss a beat. I’m still O.K. --after all, someone has to take care of the “boys”.

Isaiah and I attended the spaghetti dinner in honor of little Trevor and we’re happy to report that it was a smashing success. Over $40,000 was raised for bone marrow testing. It was a wonderful event that was put together by (I’m sure) a large group of friends and volunteers who did a spectacular job. Isaiah had a great time playing some of the games that were thoughtfully set up for the kids to have a chance to participate in some way as well. The items that were auctioned off were awesome too and there was just a big buzz of activity and great community support. Of course now the next step is for those who are able to go to the bone marrow drive to be tested and to get on the registry.

Isaiah started a series of 6 swimming lessons at a hospital club. Of course it was Dr. approved and we decided to quickly sign him us as it is not busy during the day and his level of activity has been dipping due to the colder weather coming on. He was diagnosed three years ago this week and coincidently taking swimming lesson which he couldn’t complete. Since swimming wasn’t an activity that he could really participate he doesn’t know how to swim and we’d like to help him along and I thought a big selling point for him would be that the pool is quite warm. When I first mentioned it to him, he wasn’t thrilled about going at all. But, once we got there and got in the water he was laughing, splashing and having a great time. He told me half way through his lesson that he was already looking forward to next week!!!

On Friday Isaiah’s school had something called Jungle Fest. It was a day to play selected games, do crafts, have a special lunch. It was nicely planned and a lot of fun. Isaiah’s high point was doing the limbo, animal bowling and if you can believe it RECESS! It’s something that school kids do every day and for him amongst all those kids it was just thrilling --something he’s really never had a chance to enjoy on such a large playground!!! I even got a chance to show him some of my old “tether-ball” skills. Anybody remember that game!!!!

There were real “jungle animals” in the gym. It was a min-zoo! I have to admit I was definitely out of my comfort zone --but with his mask on almost the entire time I didn’t worry quite so much. Isaiah really needs to be around kids. He misses this so much. It was really nice for him to SEE and actually TALK to some of his classmates and his homeroom teacher. Thanks to C.J. for being so friendly, thanks to Chris for the lovely rain stick he made and gave Isaiah and to Tristen for the nice letter he recently wrote. Also, thank you to Mrs. Duberville’s son Jacob for taking Isaiah under his wing and watching out for him. We really appreciate it very much --and of course we’re grateful to the other students who have reached out to Isaiah too with the nice cards they have sent. Thank you to all!!! Oh yes --thanks to Mrs. Duberville and all those responsible for the nice treats we got in the bag upon leaving and of course for planning such an nice event.

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On a very sad note, it is again with much sadness and heartbreak that I share that our little friend Madison has passed away. Her funeral was today in California. The little cheerleader was a blessing to so many that knew her. Please keep her family in your thoughts and prayers.

http://www.caringbridge.org/nc/princessmadison/

Please continue to pray for Tommy and Alex and all our transplant friends.

http://www.caringbridge.org/ca/bennettboys/

http://www.caringbridge.org/ca/alexschwab/

Until next time. Thank you for checking in on us. Please let us know you stopped by --we love hearing from you.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Please remember our transplant friends and their families.

THANK YOU for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Saturday, October 25, 2003 11:54 PM EDT

Day 334

I’m starting to lose track of the days post transplant…is that good? In a month I’ll catch up as we celebrate a year. I did remember today that it was exactly a year ago that we arrived in Durham, very tired from our all-nighter driving from home almost 750 miles through the moonlit night, the mountains and starting on this surreal adventure.

It has been a very busy week once again. Isaiah got his first cold in a couple years. We can’t figure where it came from as he has been wearing his mask all the time whenever he goes anywhere. Fortunately he doesn’t have a temperature, the sore throat was gone in a day but the dry cough and stuffy nose have lingered. We are really grateful that it is not too bad and are convinced that his monthly IVIG (antibody) IV’s are helping him get over this as well as his recovering immune system. Had he gotten this a few months ago we would have been much more worried.

As far as activities --we were invited to go to Chemo Kids day last weekend. It was at Xanadu farms in Flushing. We missed it last year because we were in the hospital with a line infection! So this year we made up. They had a great day planned for the kids. Included were a hay maze, horse back riding, lassoing the bull and riding it (NO -not a real one!!!), leather crafts, great food, hay ride and of course a bonfire with smoores! We all had a great time and enjoyed the fresh air on a beautiful fall day. Thanks so much to Linda and Greg who were instrumental in putting it together, Xanadu Farms (Doc and family), the volunteers, and the church group that provided the food and other goodies. Also to the ladies from the Linus Group who made those beautiful quilts for the kids. The boys have quilts from two years ago and they are definitely favorites that reside on their beds. Thank you all for making it so special for all of us.

The next fun event was a trip to Plymouth Orchards. Dick Lawrence, our favorite Angel Flight pilot, arranged this. Dick arranged for us to meet Mary Emmett who owns the orchard. For those of you who are following our journey, in June when we went for our helicopter ride --it was Mary’s husband who came to pick us up in Mary’s helicopter! Anyhow, we met Dick at the orchard and Mary came by to meet us and gave us a tour and visited with us. We went on a wagon ride, stopped at the pumpkin patch, picked a few “perfect apples” and of course ended with delicious apple cider and donuts. What would a visit to the mill be without that??!!! The day was unbelievably beautiful and warm for a Michigan October. Unfortunately Sal couldn’t not come with us as he was working and on call. We all missed him and he missed coming with us. He did feel better when we came home and brought him some donuts!!! Thanks so much to Mary for spending time with us, giving us a tour of your beautiful farm and for all the goodies. Dick --thanks so much for arranging it for us and meeting us there. It was a spectacular day and “memory” for us.

I have not shared for some time --nor will I this time the emotional part this journey. All I can say at the moment is that we (the Binghams) live in a very different world these days and we share this with many of you, but also with many families of children who are ill, recovering, suffering. I just wanted to share following websites for those who would like to add these kids to your prayer lists because of a particularly difficult time. For you Prayer Warriors, Madison, Tommy and Alex really need our prayers. Please check their websites for specifics.

http://www.caringbridge.org/nc/princessmadison/

http://caringbridge.org/ca/bennettboys/photo.htm

http://www.caringbridge.org/ca/alexschwab/

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Also for those of you in the Flint area, there will be a fundraiser for Bone Marrow Drives in honor of Travis Maizland. The information is bellow. There are some spectacular items for auction listed below! Please come and support this family if you can!!!!

Live and Silent Auction
in conjunction w/ the Spaghetti dinner
Wednesday, Oct. 29th 4pm - 7:30pm
St. John Parish in Fenton
**********
Regis & Kelly trip to NYC plus Lion King tickets!
One week at Hilton Head
One week at Disney World
Jewelry and Art
Red Wing and Lion tickets
Teeth Whitening
Haircuts, manicures & pedicures
Hot Tub
Gift certificates $10 and up
Beautiful gift baskets
Hand painted children’s furniture
American Girl dolls
Autographed children’s books
2 Child bikes
Signed sports memorabilia
Golf Packages
Power tools and gardening supplies
Area memberships and lots, lots more for everyone!

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Until next time. Thank you for checking in on us. Please let us know you stopped by --we love hearing from you. Our guestbook is getting lonely!!!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Please remember our transplant friends and their families.

THANK YOU for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Thursday, October 16, 2003 11:07 PM EDT

Day 324

The leaves are falling and the weather is getting “crisp”. The colors are spectacular.

There is really not much to report medically speaking. We were hoping to have weaned a little more of the drugs by now but since the skin GVHD did not clear up as fast as anticipated we will do a slower wean. Isaiah is feeling pretty good these days and challenging me to basketball games. He said that a little exercise “would be good for me”.
After I wrote the above, and as I was putting him to bed I noticed that his skin rash has really flared up again. Back to slathering the creams on --I guess that’s what happens when we slacken off a bit. We have to be diligent because we just can’t increase those steroids again --he’s been on them so long.

This past weekend we had a lovely time as we had some visitors from Canada. Brittany, Leah, Andrew and their parents came for their yearly fall visit. Isaiah hurt his toes just before they came when some wooden building blocks (in a tin) fell on his toes. He was so disappointed thinking that he would be out of commission for basketball and running around. He was pretty upset and in a lot of pain. As the day progressed his toes got better and better so he was able to run a round a bit --but not at full throttle. Nevertheless we all had a wonderful time together and look forward to our next visit to Canada. Thank you guys for coming to visit and the cookies are delicious!!

The next high point of the week was our visit to the Olive Garden. Dr. K. said he could go out to eat only if it was pretty empty at the restaurant and with the usual routine precautions. We called ahead and got a booth in a quiet corner. We had a wonderful early dinner and everybody was most accommodating. The Olive Garden staff really made us all feel very special. They brought us a special cake for dessert --with raspberry sauce smiley faces around it and drizzled with caramel. The boys got genuine O.G. hats and a gift certificate for our next visit. Isaiah thought that that was just the greatest and enjoyed every minute and every morsel. It was so nice to be out together for dinner for the first time in almost a year. We had many laughs from Isaiah the giggle box. He recalled and repeated the “moussaka” joke from the movie “My Big Fat Greek Wedding” explaining it to Mishael who hadn’t seen the movie. Isaiah thought it was so funny and we laughed so hard at him laughing it made my shoulders hurt!! We needed that. A BIG thanks to the Olive Garden and staff for helping make our dinner so enjoyable.

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Bone Marrow Drives coming up!

For those of you who would like to get on the Bone Marrow Registry, there will be two drives in the Flint and Howell area. One of the drives will be on Saturday, November 8 in honor of Travis, a patient at our local hospital. Travis is a sweet, brave four year old whose family is searching for a donor. I will post the details of where and when in a couple days. Please think of joining the registry --you just might be the miracle that Travis and many others need!!!!!

Also, a reminder that there is a real shortage of blood and platelets. Platelets seem to be especially hard to get in this area and have to be sent by courier from Detroit or Lansing. They are in short supply.

Until next time. Thank you for checking in on us. Please let us know you stopped by --we love hearing from you!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Please remember our transplant friends and their families.

THANK YOU for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Thursday, October 9, 2003 12:27 PM EDT

Day +317

I always feel there’s not much to say when it’s time for an update but when I sit down to write there’s much to say.

I have to share today’s “precious moment”. It will be embedded in our events of the day.

We had our clinic visit today. It has been a month of “slight” anxiety as this is the first time in 3 years that we have gone 4 weeks between checkups. IVIG (antibody) infusion went well. Isaiah’s weight is actually almost 5 lbs up since last visit even though we have weaned him down on his steroids twice. This is good news. All counts are stable and bordering normal. Hemoglobin is the highest it has been post transplant. Skin is looking decent and his scalp is better. The medicine that burns and makes the scalp itch is actually helping and we see improvement. We get another month off until next clinic visit. I love uneventful clinic visits. There is almost nothing like it!

After clinic we went over to the “Potato Place” at the food court pavilion next to the U of M campus in Flint. Isaiah has been dreaming about the potatoes all week. At the food court way, I stopped to get a drink at another vendor. The young man who helped me asked me (as he was giving me my change) if I had given him a $10 bill. I said no, I gave you a $5 (so his change was correct). Then I stopped and quickly added -no I think I gave you a $20! Obviously it was a joke and we all laughed. Isaiah thought that was so funny. As we sat down together away from the crowd, he was enjoying his potato immensely and commenting on how delicious it was. Suddenly he said to me, “you know mama, I just knew you wouldn’t lie”. He was talking about the conversation regarding the change. I asked him why he thought that and he said that he just expected that from me. He was sure I would tell the truth. I was amazed that he thought so deeply about that little interaction and amazed at how “carefully” children watch what we parents do and how we act. We sometimes don’t even realize it.

On the subject of bowling, Isaiah had another highpoint this week. He anxiously waited all week for bowling night. I tried to gently tell him that he shouldn’t be disappointed if he doesn’t match his personal best from the week before. He said he wouldn’t be disappointed if he didn’t do as well. But, it was a great night for the team. Isaiah has a new personal high of 129, Mishael bowled a 99 (which is great for him) and their teammate, Aaron, who at 8 is a pretty experienced bowler, had a 131. The boys had a great time and of course can’t wait until next week’s bowling league. Wish I could bowl that well!

Life is returning to a “new normal”. We are enjoying every moment. We even dare to dream about the future! Wow, what a nice feeling. I remember telling our Dr. last year, "please don't tell me anything more than what will happen next week. My brain and emotions can only handle 10 days at a time --that's my limit".

Until next time. Thank you for checking in on us. Please let us know you stopped by --we love hearing from you!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Please remember our transplant friends and their families.

THANK YOU for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Wednesday, October 1, 2003 11:44 PM EDT

Day 309

Just a note about the new pictures --Isaiah, on the front is jumping up during a game at his birthday party (he dressed himself) and was in a “yellow mood”. On the next page the pictures are self-explanatory and I just noticed that the clubhouse colors sort of remind me of Michigan (U of M) colors --GO BLUE!!!!

We have some good news! Isaiah’s test results came back from Duke (finally) indicating he is still 100onor cells! His immune test showed that his system is recovering well but we still can’t “let loose the reigns” yet. That means that nothing really changes at this point but we are going in the right direction. As he is still on two immunosuppressant drugs we still have to be very careful. Since he’s been wearing a mask for what seems like forever, I think we will be very hesitant when it comes time to take it off!!!! I can’t even imagine going anywhere without a stack of masks!

The skin problem continues and is a bit worse. But, we are not going to increase steroids at this point. Instead we will continue to apply more of the topical steroid creams. It sounds so easy to treat but who wants to be slathered with cream that sometimes burns a little. We have also started to apply a medicine to his scalp, which seems to help, but it burns, is uncomfortable and feels greasy. I won’t even get into the possible side effects!!! But, we think it is helping with the frequent itching and scratching and may just do the trick.

Yesterday was our highpoint of Isaiah’s week. Tuesday’s are very busy days but it was a great day. It started with homebound school. He had a good session with Mrs. Persich. (Thank you to Mrs. Duberville for the suckers and to all the students for the nice cards they sent. Mrs. Persich --thanks so much for thinking of him as well and the treat you brought him for his birthday!). Next we were off to the Flint Institute of Music for piano. It was a great lesson. After the lesson stopped by the Farmer’s Market and ran into uncle Ed. The vendors sold all kinds of assorted produce, flowers and other goodies. The variety of items displayed was so colorful. One nice lady gave Isaiah a donut from her little stand (he was starving but didn’t want me to get him anything). He polished that off in no time. We bought the biggest cabbage I have ever seen in my life (the size of my car steering wheel --and about 10 lbs.) and headed home. It will be perfect diet food (for me).

After a brief rest at home we went to pick Mishael up and we made it to bowling in the nick of time. This was the icing on the cake. Isaiah got his record high of 110 and that was without any strikes!! He was so happy about it. In fact he earned two bowling patches yesterday, a 250 series and 300 because (for the non-bowlers) his 3 games added up to over 300. This morning he was still smiling about his bowling his “personal best"

Mishael is plugging along with piano, school, and his after school Sign Language class that he really enjoys. He is still as active as ever and a spark plug. This evening we had to stop by the mall briefly and I told the boys afterwards to remind me NOT to take them to the mall together for a long time. Whew, you’d think we never talk about manners!!!

Until next time. Please let us know you stopped by!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Please remember our transplant friends and their families.

THANK YOU for your prayers. You are in our prayers as well. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Wednesday, September 24, 2003 11:26 PM EDT

Day 302

We are still waiting for some test results so no news to report. We’ve been dealing with a lot of rashes this past week. They itch a lot. They are popping up in various places and we are applying steroid creams frequently. At least they don’t burn like some previous rashes. I would guess that it is GvHD --the graft fighting the host. A little is good but too much is not, especially if it gets out of control.

We celebrated Isaiah’s (and Sal’s) birthday on Sunday by having a birthday party with Isaiah’s favorite adults. Another little boy (Sam) and his family joined us for the celebration as he also shared a birthday with Isaiah and Sal. It was a glorious September day and we had a really nice time. The adults had to play the Scooby Doo game and there were party prizes for everyone --adults included!!! Isaiah enjoyed his non-traditional birthday cheesecake and Nana’s delicious strawberry rhubarb pie was also a hit.

Thank you for all the nice birthday notes and taking the time to sign Isaiah’s guestbook. We all enjoyed hearing from you very much!!!!! Jenny and Jill --thank you for the gifts you sent for the boys. They were just great and very much appreciated!!

Other than this highlight --life is slowly returning to somewhat normal.
I say this even though our thoughts are often consumed with medical “things”. A flushed face, not feeling well, feeling dizzy, blah, leg pain, nausea, heartburn --these are every day occurrences --still. They quickly bring you back to the reality no matter what you’re doing or where you are.

Parents of kids like ours often get lost in our thoughts and are quickly reminded of anniversaries. Anniversaries of original diagnosis, the bad news about the Philadelphia Chromosome translocation, relapse, need for transplant, transplant day and so forth. It was about this time 3 years ago that Isaiah started not feeling well. We couldn’t celebrate his birthday as he was pretty sick. It started with an ear infection and then days of very high temperatures, then the swelling of the glands. For awhile we though it was mumps and then perhaps mono. Eventually the leg pain was so bad that he couldn’t climb up the stairs. These episodes lasted for weeks. We had been to the doctor’s numerous times. Finally I took him to emergency (Sal was at a church retreat) and then the diagnosis late that Friday night. Isaiah was immediately admitted into the hospital. In a split second life changed forever. To be continued …

Well, we had a great day today!! That’s the important thing! I took Isaiah to the mall to pick up his birthday gift from the children’s mall club --or whatever it’s called. This is the first time in almost 2 years that we have gone to the mall. Isaiah saw a pair of shoes that he liked and asked if he could have them. I was very happy to oblige (as he really needed shoes) and he never asks for shoes. We both got a pair of cool mulberry colored shoes! We stopped by a toy and video store so he could get a glimpse of what’s new. We then got a soft pretzel just like the one he had in North Carolina at Southpointe Mall. He enjoyed it immensely saying it was even better than he expected! We then went to buy a kitchen utensil that I really needed and it was on sale at a great price. They were all sold out. I told Isaiah I was so disappointed. He took my hand and said, “Come on mama --it’s not the end of the world”. Indeed it isn’t. He was a real trooper wearing his mask for hours as his dry skin made his face itch so much. He was a great companion.

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It is again with much sadness that I write that another child has passed away. Taylor endured so much. Two transplants, losing a lung to a nasty infection and finally relapses post transplant. Taylor had the same diagnosis as Isaiah. We had the pleasure of meeting Taylor (and her mom) while at Duke. .http://www.caringbridge.org/va/taylor/. Steven, another sweet child http://www.steventrapp.com/ , who also shares a diagnosis with Isaiah has relapsed a little over a year post transplant. Please keep the all these children in your prayers. Sean, Adam, Alex, Isaiah’s BMT buddy is being treated for ITP and he’s getting a weekly medicine to help with that. We hope it is resolved soon http://www.caringbridge.org/ca/alexschwab/. Cameron, Cole, Carson, Jordan, Trey, Andrew, Madi (she returned to California) http://www.caringbridge.org/nc/princessmadison/, and Malcolm, http://www.caringbridge.org/va/malcolm/. Tommy is going through his third transplant http://caringbridge.com/ca/bennettboys. Cody is recovering from yet another surgery http://www.forcody.org/. Also, Marcus (7) who is in Canada is recovering from transplant. http://www.caringbridge.org/mn/markie/ .

THANK YOU for your prayers. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Wednesday, September 17, 2003 8:41 AM CEDT

Day +295

I’ll start with the best news! One of Isaiah’s 9-month tests came back and it shows that no “bands” were detected in the blood sample meaning that there is no presence of the Philadelphia Chromosome. This nasty translocated chromosome is what put him in the high risk, poor prognosis category-- but that’s another story. (The PH+ additional complication --once we understood what it really meant was a terrible blow). We are anxiously awaiting our donor test and immune system function results.

We had our IVIG infusion last week and Dr. Inoue checked him out. Dr. was pleased to see that his skin was looking much better than the last time he saw him (prior to our trip to Duke). The steroids and the new immunosuppressant seem to be helping. Isaiah’s toe that we thought might need surgery was looking better too! We’ll see how it looks at next check up. That reminds me --next check up is in a month from the last one!!! Of course unless something arises in the meantime! There appears to be a lot going around at the moment. Many people are coming down with colds, coughs, sore throats and stomach flu symptoms. It’s still summer --it shouldn’t be this way. We just have to be very careful.

Isaiah’s highlight of the week was going to his (new) school’s open house. Yes, I gave in. He understood that he had to wear a mask the entire time. Of course that goes without even me saying anything. Isaiah had a chance to meet his homeroom teacher Mrs. Duberville and some of the other teachers too. He met some of the students in his class --It was nice meeting Chris (I), Becca and Chris (2) and of course Mrs. Duberville! The school looked lovely as the Jungle theme decorations and projects decorated the school. Having Isaiah’s desk all set up with his picture on it was very special too! Thank you! He really enjoyed coming and told me that the blue mask must have given him away because some of the kids recognized him!!!

Another highlight for us as a family was going to church together for the first time since pre-transplant down in North Carolina. We decided that we could go to our “little country church” and that if any one coughed or looked “green” we would quietly go home. There were not many people and we stayed for church and for the potluck. Isaiah was so thrilled to go that he even brushed his hair in the morning so he would look nice and could hardly contain himself. It was wonderful sitting together in the pew.

This time last year we were recovering from Isaiah’s stem cell collection (another story in itself), the insertion of a huge dialysis catheter (that was nicknamed “the hose” --what a nightmare that was), and in general getting ready for transplant. We were unable to think more than 10 days in advance --at least I wasn’t. My mind and emotions could not handle any more than that. At about this time we also decided that we were going to go to Duke for a consultation and see if that would be a better option than staying in the area and having a transplant here. So it was a very crazy time. Now a year later we are able to cautiously dare to dream about the future.

Isaiah will turn 8 years old on Monday, September 22. His request for birthday cake is mom’s cheesecake!! Well that’s easy order to fill. Sal has a birthday the same day --and he will be …..well never mind. WE praise God for being able to celebrate both their birthdays together.

Please don’t forget to sign the guest book --we love to hear from you!!!

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Please keep the following precious children and their families in your prayers. They are: Sean, Adam, (is currently in Detroit with GvHD of the skin and gut. A little is good but too much is not). We pray for a speedy recovery and that he can come home soon. Alex Isaiah’s BMT buddy is being treated for ITP and he’s getting a weekly medicine to help with that. We hope it is resolved soon http://www.caringbridge.org/ca/alexschwab/. Cameron, Cole, Carson, Jordan, Trey, Andrew, Madi (she returned to California) http://www.caringbridge.org/nc/princessmadison/ , and Malcolm, http://www.caringbridge.org/va/malcolm/. Tommy is going to have a third transplant in a few days http://caringbridge.com/ca/bennettboys. Cody is recovering from yet another surgery http://www.forcody.org/. Also, Marcus (7) who is in Canada is recovering from transplant. http://www.caringbridge.org/mn/markie/ .

THANK YOU for your prayers. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Monday, September 8, 2003 11:12 PM EDT

Day 286

We have had a busy week just recuperating from the previous weeks! Also wanted to clarify that in my last update the surprise birthday - pizza party celebration was actually a month early. Our special friends Linda, Stephanie and Andrew wanted to have a very special celebration for Isaiah so they planned that event, and it was filled with so many happy things that will often come to mind. Isaiah’s real birthday is on September 22 (along with Sal’s). Isaiah desperately wants a real birthday party --you know, kids, games, presents, etc, as he has never had one like that. But, once again we really can’t have that kind of party. Were working on having something, but just don’t know yet.

We skipped going to the clinic last week but have a big day on Wednesday. We will have an infusion of antibodies (IVIG) which gives him some protection from some things that are ‘out there’. His skin is starting to clear up undoubtedly due to the increase in steroids and the new immunosuppressant --Cellcept. It appears to have something in it that helps skin conditions. We still have a ways to go before that skin is normal. We don’t like the increase in steroids but that’s the price you have to pay and we hope that we can start weaning them again soon.

There were some highlights this past week. The first one was a late night trip to the grocery store. At the end of this long and tedious trip (it was late and we were tired) Isaiah told me he had a “great time”. Can anyone have a great time at a mega grocery store???? I was so glad he enjoyed it and he was a trooper for wearing his mask the entire time.

Homebound school started on Wednesday with Mrs. Persich coming to the house. She brought some goodies from Morrish Elementary School and his homeroom teacher, Mrs. Duberville. Of course, the class picture and the blow-up lion with all his classmate’s signatures were a real hit. He loved that. Thank you all for thinking of him. It made Isaiah feel very special and part of the group. Isaiah really enjoyed his lessons with Mrs. Persich twice last week. He yawned (purposely) this morning when I mentioned that we have to do some schoolwork together. Said something about it being “boring”. Can it be that school with mom is boring?!

Isaiah also had his first piano lesson in almost 14 months with his teacher Miss Victoria. He has not practiced much since transplant and we were delighted that he picked up pretty well from where he left off and seemed to enjoy his lesson very much. Of course he did twist Miss Victoria’s arm to play a game at the end and it reminded me of the “old times”.
Isaiah is also taking violin lessons with Mr. Worley. Isaiah is very serious about this and tells us he really always wanted to play --even before he started taking piano. Interesting, he was just turning 4 when he started piano. He told us he wanted to play the piano and that’s why we started him on that. Seems he was pretty decisive at an early age.

Mishael is still enjoying school and seems to be very interested in and enjoys his Sign Language class that is being taught by Mr. Smith as an after school class. Bowling starts tomorrow and the boys can’t wait. They hope to be on the same team with their buddy Aaron who has been patiently waiting for the boys to return.

**** Clubhouse update ****

The clubhouse is almost done!!!! I think I said this 2 weeks ago!!! Yikes --it’s all up to me to finish up and put some “stuff in there so that the boys can enjoy it. I didn’t mention the super crew that came while we were at Duke in North Carolina. They finished the inside painting and gave the outside another coat. It looks great! Again I just have to finish the trim and some odds and ends. (I think I’ve already mentioned that a few weeks ago too!). Thank you again Bill Faller, and to your kids Stephanie and Cameron for helping. Also a “big thank” you to Paul Stringer and Chris Pittenturf for joining in. It is much appreciated. I’m sorry I wasn’t home to be hostess with the mostest…
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Please keep the following precious children and their families in your prayers. They are: Sean, Adam, (is currently in Detroit with GvHD of the skin and gut. A little is good but too much is not). We pray for a speedy recovery and that he can come home soon. Cameron, Cole, Carson, Jordan, Trey, Andrew, Madi (she returned to California) http://www.caringbridge.org/nc/princessmadison/ , and Malcolm, http://www.caringbridge.org/va/malcolm/. Tommy is going to have a third transplant in a few weeks http://caringbridge.com/ca/bennettboys. Cody is recovering from yet another surgery http://www.forcody.org/. Also, Marcus (7) who is in Canada is recovering from transplant. Since they don’t allow his mom to stay overnight with him -please stop by his site to offer some encouragement. http://www.caringbridge.org/mn/markie/. I cannot imagine Sal or myself not having stayed with Isaiah overnight during his transplant.

Thank you for you messages --it means so much and is always appreciated by all of us!!!

THANK YOU for your prayers. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Saturday, August 30, 2003 9:48 PM EDT

Day 277

Isaiah and I arrived home from Duke a few days ago and I will fill you in but first I want to tell you about our early “Birthday Party” for Isaiah. This event happened a few days before our departure. This was supposed to be a ‘little’ party with some SPECIAL friends from our association with Children’s Miracle Network. They wanted to take Isaiah to Chuck E Cheese’s but that would be out of the question until December at the earliest. Since we just couldn’t wait that long, we decided to have a little get together at our house. Little did we know that we would have a “Carnival” at our house!!!!! It was a total surprise for the kids.

First our friends Linda, Andrew, Stephanie and Michelle came with the pizzas. Isaiah and Mishael’s favorite Pizza Hut pizza! Then came Kevin the magician. Before long Joe Florida and the Shrine clowns arrived. Then Heather and her son Zack came to make the cotton candy and snow cones. Then came the gentleman with the video arcade game. It was a full house!!! It was all supposed to happen outside but with the heat index of over 100 we had to all come in. I don’t remember having so many people in our house in years!! It was fantastic! O.K., I admit it made me nervous too. After pizza, tricks, cotton candy, sno cones and lots of laughs we heard this loud noise coming down the street. Ricco, (who works for the Flint Fire Department) arrived in his newly purchased decommissioned beautiful yellow fire truck. The boys had a blast climbing on it and then went for a ride. We heard the horn a couple blocks away. Then to top everything off, after a very long day at the hospital Dr. Inoue, Isaiah’s oncologist came by to pay us a visit. We were so happy he was able to come and join us. What an evening it was! Absolutely unforgettable. We would like to thank all of you who came to give us all such joy. Linda, Andrew and Stephanie thank you for planning this and arranging everything. A special thanks to all the others who gave of their time and talent. We appreciate it so much!!! Isaiah told me the next day “I miss everything that happened. I didn’t want it to end”.

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The next day Isaiah and I volunteered to help at an EDS-United Way Golf fundraiser. We were grateful that the heat was gone and the day was spectacular. We enjoyed the outdoors, taking pictures and riding in the cart at the beautiful course up near Frankenmuth, MI. Isaiah took his clubs and managed to get a few swings in during the quiet times. He loved that. Thanks for having us participate!! It was good to see some familiar faces. It has been 6 years since I worked for EDS so it brought back some memories from me --all good of course!!!!!!
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Early Sunday morning, Isaiah and I took off for Duke via Angel Flight. The day was brilliant. We enjoyed both the flights and loved landing in Clarksburg, West Virginia to connect to Durham, NC. It is so beautiful there and with the planes flying low you can see the mountains and the green rolling hills and trees. Reminds me a bit of my birthplace -- Yugoslavia.

We stayed at the same hotel as our friends the Schwab’s, from California. In fact, their room was almost next door. Isaiah and Alex had a chance to visit (for a couple days) as did I with Jill and Steve. We went (as planned) to our favorite custard place Goodberries and enjoyed our dessert immensely. Time went by fast and the boys thought that there just wasn’t enough time to spend together. They were right.

Now of course the main reason we went back down to Duke --nine month testing and checkup with Dr. Kurztberg. On Monday and Tuesday we went to the clinic for tests. Pulmonary was fine. Echo was OK but there is some thickening of the heart wall which we hope will reverse itself once Isaiah is off steroids. At least it was not worse than at 6 months. The routine chest x-ray showed potential Osteopenia. This is a precursor to Osteoporosis. We really have to watch the calcium intake much more closely and make sure that he gets plenty. With a selective appetite such as Isaiah’s this is not easy. He understands now that he must take his vitamins diligently without fail. Some of you who know Isaiah might appreciate knowing that he is adding the calcium in almost everything he is eating to make sure (along with his supplement) that he is getting enough of what his NP Sue said he has to have. He assured me yesterday that his grand total calcium intake was right on the mark. His skin and scalp are still very dry and bumpy. Dr. K. thinks that this is GvHD. We are switching immunosuppressant drugs --getting off the Cyclosporine (which made his hair grow) to Cellcept. This might help his skin along with increasing his dose of steroids.. Also, his toe problem from the past will require surgery because of scar tissue build up around the toenail. He didn’t like the sound of that!! Isaiah has grown almost an inch since pre-transplant. This is really great considering all the chemo and radiation he has had. His blood work looked good too.

We have had some restrictions lifted too. Isaiah was thrilled that he can go back to bowling on his league --BUT, has to wear a mask the entire time and promised Dr. he would do so. He can go to the grocery store and mall if it is not busy. Again, wearing a mask. He cannot wait to go to the grocery store and asked if we could go late this evening. Perhaps we will!!! I on the other hand would like to have a reason NOT to go!

Our immune system tests and other very refined blood tests will come within the 4-6 weeks. This includes the tests to see if there is any presence of the Philadelphia Chromosome, or any sign of leukemic cells. Also, we will see if the percentage of donor cells is still at 100 The immune function test will tell us how his system is recovering in relation to a normal person’s immune system. After all, cord blood is from new stem cells at birth that haven’t been exposed to anything. Quite fascinating actually. Takes awhile for them to “adjust” anyhow, ---let alone in a “foreign body”.

So we continue on our journey. Cautious, optimistic, blessed, and attempting to have a sense of normalcy --if that is possible. I suppose it can only be our “own new normal”. We thank God for every day and every breath.

I’m sorry this is so long. There are so many things I want to say this time…
Isaiah enjoyed his stay in Durham immensely. It was very good for him emotionally. He loved the hotel and the continental breakfast. (Remember those simple pleasures?). We had a great time seeing some of our old friends and nurses albeit briefly at the clinic. Pat and Carrie, Jacomien and Harmen, Josefa and General, Carrie and Mike, It was so good to see you all and visit with you a little bit. Mrs. Popescu and the students at Five Oaks --we’re so glad we had a chance to stop by!!! Jill, Steve and Alex --I’m so glad we met up again. It made everything more special.

Out Angel Flight back was very nice. I will talk more about that in another update when we get the pictures back. It’s just a fabulous organization.

**** Clubhouse update ****

The clubhouse is almost done!!!! We spent a few hours this afternoon just sitting up on the porch with the boys. I just need to finish the trim and the floors and then it should be done --ready for the boys to ‘move in’.

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Please keep the following precious children and their families in your prayers. They are: Sean, Adam, Cameron, Cole, Carson, Jordan, Trey, Andrew, Madi (could use some specific prayers) http://www.caringbridge.org/nc/princessmadison/ , and Malcolm), http://www.caringbridge.org/va/malcolm/. Tommy is going to have a third transplant in a few weeks http://caringbridge.com/ca/bennettboys. Cody who is getting his meds regulated http://www.forcody.org/. Also, Marcus (7) who is in Canada is recovering from transplant. Since they don’t allow his mom to stay overnight with him -please stop by his site to offer some encouragement. http://www.caringbridge.org/mn/markie/ . I cannot imagine Sal or myself not having stayed with Isaiah overnight during his transplant.

Thank you to those who have left us messages --it means so much!!!

THANK YOU for your prayers. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Saturday, August 23, 2003 11:45 PM EDT

Just a quick note. Isaiah and I will be leaving for Duke at 8:15 a.m. on an Angel Flight. We have had quite an eventful few days (in a GOOD way) which we will tell you about in our next update. That will be after we come back on Thursday. Sal will try to get some pictures up while we are away. Let me just mention that we celebrated Isaiah's birthday a month early and we had a mini-carnival at the house. All that was missing was the elephant and the dog and pony show!! (No animals allowed yet!) It was incredible. This was all thanks to some VERY special friends. The next day Isaiah managed to get in a few golf swings at an EDS -United Way Fundraiser. That was a lot of fun too! Well I better get packing...

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Wednesday, August 20, 2003

Day 267

Another week has flown by…

There isn’t much to report as far as Isaiah’s health. We are still dealing with the same dry skin and now patches where the hair has fallen off. Since he is so hairy from one of his meds it is easy to see. Dr. K. (at Duke) told me that she’s glad we will see her next week so that she can take a look at this skin and perhaps do something else about it --meaning orally rather than topically?? I’m not really sure. The itching becomes almost unbearable some nights but thankfully Benedryl helps. Our clinic visit was yesterday and after a traumatic blood draw, things got better. Labs looked fine --within normal ranges for a transplant patient.

Mishael started school on Monday and is thrilled to go back. I miss our little “spark plug” at home and am already imagining how quiet the house will be when Isaiah goes back to school ---whenever that may be. We will start doing schoolwork together after we come back from our trip to Duke. We are still waiting on the information on our Angel Flight. As of yet, no one has volunteered for the flight (meaning to be the pilot). Not unusual (they tell us) because they normally fill flights for the next 2 days in advance. Nevertheless, it would be nice to know what the plan is for Sunday and if I we should start packing the car! Ohhhhhhhhh I don’t want to drive the 750 miles!!!

In the meantime Isaiah has started violin lessons. He has wanted to do this for about three years and finally it is happening! (Thank you Cliff for coming to the house). Isaiah is trying hard to get into the daily practicing routine. He’s struggling a bit with the discipline (and routine) but that is only to be expected and we told him not to be too hard on himself and that he will get into “his groove”. He is taking the violin very seriously. Why of course --he loved Vivaldi’s Four Seasons when he was two!! Mishael will need to start flexing his fingers as piano is starting back up soon. He had a nice summer break but now it’s time to get into his routine as well.

**** Clubhouse update ****

The clubhouse is “still” coming along. A painting crew came from EDS on Monday. They worked very hard during their workday and Sal and I took our turn in the early evening. By the end of the day --the priming was all done. It was the most spectacular sunny day with blue skies, a gentle breeze and the temperature was perfect! I hope they all enjoyed painting more than working at the office. The next day I challenged myself and set a goal to give the structure at least one coat of paint. With help from my friend Linda, and the boys, by nightfall the paint was on! Next step is another coat of paint, the painting of the trim and then the inside.

So there’s more work to be done but it’s starting to look really nice. Thank you to the fantastic painters --Maureen Jones, Nicole Rosebrough, Kevin Nalazek, and Jean Hwang. Your help was very much appreciated and you did such a great job! It has been a pleasure to meet you all --of course this includes all of the super workers who helped on this project thus far.

I hope to update before we leave on Sunday as we have some big surprises planned for the kids in the next few days. It will be very busy.

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Please keep the following precious children and their families in your prayers. They are: Sean, Adam, Cameron, Cole, Carson, Jordan, Trey, Andrew, Madi (could use some specific prayers) http://www.caringbridge.org/nc/princessmadison/ , and Malcolm), http://www.caringbridge.org/va/malcolm/. Tommy is going to have a third transplant http://caringbridge.com/ca/bennettboys. Cody who is getting his meds regulated http://www.forcody.org/. Also, Marcus (7) who is in Canada is recovering from transplant. Since they don’t allow his mom to stay overnight with him -please stop by his site to offer some encouragement. I cannot imagine Sal or myself not having stayed with Isaiah overnight during his transplant.

We really appreciate knowing you stopped by!! Thank you to those who have left us messages --it means so much!!!

THANK YOU for your prayers. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Wednesday, August 13, 2003 10:50 PM EDT

Day 260

I don’t know where the time has gone. School is around the corner for Mishael. He can’t wait to see his friends and teachers. I know he will miss his friends and teacher in North Carolina as well. Isaiah will be starting Home Bound school soon. We have no idea what it will entail. It’s only 2 hours per week. I will have to supplement and keep him on a schedule so that when the time comes to return to his school he will be able to slip in without being behind or out of touch.

Isaiah and I are preparing for our trip to North Carolina the 24th of August. We are looking forward to getting the tests over with and hope that some of his medicines are weaned. Most of all we look forward to seeing our friends and the Medical staff. Isaiah is actually looking very forward to going back. We plan to stay in the same hotel as Alex and his family and will be there at the same time. We hope to take an Angel Flight (certainly not for those who have ANY fear of flying).

We are still dealing with Isaiah’s very dry skin. We’re trying different topical creams --both prescription and non. They seem to be helping but the goose bump skin is not going away. Scalp is still very dry. We got a prescription for the scalp --but the side effects are so scary that I’m afraid to apply!

**** Clubhouse update ****

The clubhouse is coming along. Many more hours were put in towards the end of the week. Windows are now in and roof was completed last night. The trim is up. Some caulking needs to be done and the structure needs to be cleaned thoroughly. There’s lots of mud to be cleaned off. Then it will be time to paint. By the time Isaiah and I come back from Duke, it should be sufficiently dry and aired out so that Isaiah can finally play in it before the cooler weather sets in.

We would like to thank the following people who have taken the time out of their busy lives to help out. We appreciate it so much! Bill Faller (master organizer). Thanks for spear heading this, organizing and for your time. Mark Bleicher (our master architect and builder --thanks for everything). For those who came out to help wherever needed a BIG thank you too: Kris Peterson; Emily Osborn, Kathy and Jeff Bell, Darren Bielby, Kathy Arndt (it was so good to see you again!!!!!! --want to help paint :-)?, Lisa Amthor, Deb Adkins, Lori Seguin, John Jerome, Rod Coffell. Thank you Brenna and Sean for your help pounding with the hammer! You guys did a great job!

To those who a donated the funds for the materials --thank you so much.
Bruce Tomke, thank you for the sign you made. We’ll have to find a special spot for it. Thank you EDS again for allowing our crews to take time off to help! Our family appreciates it all so much.

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Please keep the following precious children and their families in your prayers. They are: Sean, Adam, Cameron, Cole, Carson, Jordan, Trey, Andrew, Madi (could use some specific prayers) http://www.caringbridge.org/nc/princessmadison/ , and Malcolm (who’s undergone his 2nd transplant, is doing well and has 99onor cells!! Praise God!), http://www.caringbridge.org/va/malcolm/. Tommy is going to have a third transplant and just had his spleen removed. http://caringbridge.com/ca/bennettboys. Isaiah’s friend Alex has GvHD, where his body has developed an antibody that is eating up his platelets. http://www.caringbridge.org/ca/alexschwab/. Cody is no longer in PICU but has an enlarged kidney. Please lift him up in prayer, http://www.forcody.org/. Jillian is also in PICU but doing better --she's turning 4! http://www.caringbridge.org/oh/jill.org/

Please do sign our guest book! We really appreciate knowing you stopped by!! Thank you to those who have left us messages --it means so much!!!

THANK YOU for your prayers. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Thursday, August 7, 2003 0:09 AM CDT

Day 253

Our clinic visit today went well. Counts are within normal ranges and Cyclosporine levels are back on track. Skin is still super dry but manageable. Isaiah had some excruciating pains in the middle of the night a few days ago and Dr. K. mentioned that if it happens again that we will need to have an ultrasound done to see if it is gallstones. We certainly hope not!

Mishael returned home from Special Days Camp this weekend. This is his 3rd summer there and he had a great time. Thanks Brent and Robb for being the superb counselors that you are! Hope both boys will see you at Winter Camp. We also attended the Camp’s 25th anniversary celebration and enjoyed very much the lovely picnic, the activities for the kids and socializing with some of the super staff. The boys had such a nice time. --Thanks Lynn for the great tape you gave us from last year’s camp. We loved watching it!

On Sunday morning Isaiah and I went to camp for the day. I was there just to make sure that Isaiah took care to stay away from the germs and sun. It was Dr. K’s order that I be there and of course you can call me Paranoid Pat because --I would have been there even if she hadn’t asked that I stay with him. I believe that most of you transplant parents can relate.

He had a new counselor this year --Katie. At the end of the day he seemed to have really bonded with Katie and some of the other young ladies (counselors). He did some crafts, went swimming in the (very chlorinated and clean) pool twice that day, went fishing (and caught some pretty sunfish) and did some other fun activities. Thank you Doug for playing Bingo with Isaiah as he made up some extra hard rules (very typical) --always complicating games to the point where Mishael and I tell him we can not follow what he’s inventing. Doug told me that he included the “moose” in the game --and the moose is mounted on the auditorium wall. Go figure. We arrived home very late that evening driving through some very stormy weather. It was a very loooooong day and we were both exhausted.

**** Clubhouse update ****

While Isaiah and I were at camp, Sal, Mishael and Mark (who works with Sal at EDS) worked hard to prepare the foundation for the clubhouse. [By the way, EDS stands for Electronic Data Systems --started up by Ross Perot and sold to General Motors in the 1980’s. In the 90’s GM spun off EDS --actually sold it]. Mark is the master planner of this structure and sure knows what he’s doing. We sure appreciate his expertise!
On Monday morning a crew from EDS arrived to start building. They worked so diligently that things went fast. Lots of nails pounded in. The frame and walls went up and the loft was built.. Window openings were cut. Mishael and Isaiah really wanted to help and were able to pound some with the hammer on some nails and the frames. Of course this all made me nervous (no, not “the hammer on finger on toe possibility”) but because one of the things Isaiah must avoid is construction. He wore a mask part of the time and I sure hope that was enough. It was so hard to pull him away. A photographer came out from the Flint Journal to take some pictures since it was Community Activity and EDS has been most generous by allowing time off for this activity to the volunteers. Speaking of generosity. Our family would like to thank all of you who so graciously and generously donated money and time towards this project. We really appreciate it so much, it is hard to express how we feel and put it into the right words.

Back to the project. On Wednesday another group came over to continue building. The porch and roof were put on as well as about half the shingles. It really is looking so nice. This crew worked tirelessly like the previous one the day before. We were fortunate that the weather cooperated and it was just beautiful. On Thursday (why that’s today already!) the plan is to finish the roof and the trim and caulking should be complete. After some cleaning of the dirt it should be ready to paint.

Thanks again to the crews for their hard work! ---Hope it was better than going to your real job!!!! Just a little humor there... I will “name drop” in my next update -- which will be soon as we want to put up some pictures of the progress.

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Please keep the following precious children and their families in your prayers. They are: Sean, Adam, Cameron, Cole, Carson, Jordan, Trey, Andrew, Madi (could use some specific prayers) http://www.caringbridge.org/nc/princessmadison/ , and Malcolm (who’s undergone his 2nd transplant, is doing well and has 99onor cells!! Praise God!), http://www.caringbridge.org/va/malcolm/. Tommy is going facing a third transplant and just had his spleen removed. http://caringbridge.com/ca/bennettboys. Isaiah’s friend Alex has GvHD, where his body has developed an antibody that is eating up his platelets. http://www.caringbridge.org/ca/alexschwab/. Cody is unexpectedly in PICU with some serious kidney problems. Please lift him up in prayer if you can. http://www.forcody.org/ .

Please do sign our guest book! We really appreciate knowing you stopped by!! Thank you to those who have left us messages --it means so much!!!

THANK YOU for your prayers. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Tuesday, July 29, 2003 11:12 PM EDT

Day 245

After our update about our helicopter ride and our trip to Canada the week before -- this past week has been very quiet and pales in comparison.

Our clinic visit went well. Isaiah had his last IVIG --forever????? Don’t know. Dr. Inoue said that if his skin gets worse he will have to come in to the clinic to have it checked out. I don’t think it is any worse but his skin is very dry and flaky. We tried some of the Protopic (steroid) on his scalp but most of it ended up in his hair and just made a mess. It didn’t seem to help his scalp at all. Isaiah’s Cyclosporine level came back very high so we had to lower his dose and have his blood checked on Friday and Monday and again tomorrow. That’s 4 pokes (and 4 trips) in a week. He told me yesterday he’s getting tired of it! I hope that tomorrow we will have reached an acceptable level.

It has been a year and a week since Isaiah relapsed. I remember that the boys were scheduled to go to Special Days Camp right after Isaiah started his relapse protocol. We hoped that his counts wouldn’t bottom out and prevent him from going. Fortunately he was able to attend just before his counts dropped almost to 0. The boys had a great time. I was still in shock while they were at camp…I remember picking Isaiah up and thinking to myself, “will he be back next year?” Well, PRAISE GOD, here we are!

On Sunday, we dropped Mishael at Partners Camp. This is one of the few camps that has a whole week just for siblings of cancer patients and cancer survivors. They have a week of fun, fun, and more fun and get tons of extra attention --which is what they need!!! Mishael will have the same super duper counselors (Brent and Robb) for the 3rd time in a row so they know each other very well. Also, the kids in Mishael’s cabin have been there for a few years, so most of them know each other. Unfortunately this year Isaiah cannot attend for the week. I will go with him for the day next Sunday. Dr. Kurtzberg gave us the O.K. Isaiah did get very quiet when we dropped Mishael off and we could tell that he was very disappointed that he couldn’t attend next week. However, he is enjoying his time at home by himself --I mean without big brother.

**** CLUBHOUSE UPDATE ****

Our plans for building a clubhouse for the boys is moving along…it has taken us a long time to decide what would work out the best for the boys in the long run --meaning they wouldn’t grow out of it in a year or two.

Thanks to the generous donations from fellow EDS colleagues and the commitment to help build we are almost ready to proceed. Thank you Tom Bills, for delivering the dirt and moving it to the back yard to get the ground ready for the foundation. I was imagining countless trips pushing the wheel barrel from the front to the back yard and back to the front --not to mention shoveling the dirt into the wheel barrel. Your help saved us so much work --it’s almost like a dream that the site is ready to build. Tom gave Isaiah numerous rides (of course with his mask on!!!!) and even let him drive the front loader in the street --what a thrill!! Mishael will be green with envy when he comes home from camp and sees the video!! Today we picked up three beautiful big windows that were generously donated by Vinyl Sash in Flint --they should be perfect. Thank you so much Ryan for the windows. We’re just about ready to get started…oh yeah, we still need to order the materials!!!!!!!!
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Please keep the following precious children and their families in your prayers. They are: Sean, Adam, Cody, Tommy, Cameron, Cole, Carson, Jordan, Trey, Andrew, Madi (could use some specific prayers as they have found a “bad marker cell” that needs to be taken care of ASAP http://www.caringbridge.org/nc/princessmadison/ , and Malcolm (who’s undergone his 2nd transplant, is doing well and has 97onor cells!!), http://www.caringbridge.org/va/malcolm/. Tommy is facing a third transplant. http://caringbridge.com/ca/bennettboys. Isaiah’s friend Alex has GvHD, where his body has developed an antibody that is eating up his platelets. This is another bump in this already bumpy transplant journey. http://www.caringbridge.org/ca/alexschwab/.

Please don’t forget to sign our guest book! We really appreciate knowing you stopped by!! Thank you to those who have left us messages --it means so much!!!

THANK YOU for your prayers. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Monday, July 21, 2003 11:55PM

Day +237

We have had quite an eventful week --in a good way!

Last week we did not have to go to the clinic! It did make me nervous once again. I’m curious to find out where Isaiah’s magnesium is heading as it was slowly falling last time we checked. This is something that is very important for transplant patients to monitor and can take up to a year to regulate. His skin and scalp are very dry and the skin has an appearance of constant goose bumps. At least it doesn’t seem to be getting any worse!

We had some very special events that I would like to share. On Wednesday evening we went to our favorite airport near our house. The boys and I have been going there for years to watch the planes. This time we went to the small terminal where the private planes land. Our friend Dick --who was the pilot of the first leg of our Angel Flight (when we went down to Duke last year for consultation) had arranged with a friend of his to come in his helicopter to give the boys a ride. We had not told the boys anything and we sat out on the little deck watching the few planes landing. Then, as if right on cue, we saw this beautiful machine coming out of the big blue sky! The boys thought that Dick was coming in his plane for a visit and perhaps to give them a ride --so they did not expect this!! I think they were a bit speechless at first when they realized that Dick was in there! Dick and his lovely wife Rosangela came with Dave --who was kind enough to take the time (out of his very busy schedule) to give us the ride of our lives. The day could not have been more perfect and the ride was just amazing!!! We appreciate it very much Dave --THANK YOU very much!!!! What an experience --oh and the view!!! We even flew over our house. Dick, thank you so much for all the coordination (we know that it took quite some work) and for spending time with us. It was unforgettable. We will post the pictures as soon as we get a chance.

The next event (that we used to take for granted) was a visit to our friends’ house in London, Ontario. It has been 2 long years since we have seen them and our first outing to visit someone away from home in a long time. (Living in North Carolina didn’t count as an “outing”!) As usual we had a wonderful time together and our kids played with their kids. Sounds so normal -- but it isn’t for us. It was a treat to watch the boys play with other kids in a more normal situation. The boys were able to take a dip in their neighbor’s pool!!! What a treat!!!! I can’t remember the last time Isaiah has gone swimming --it has been years. They had a great time and Sal and I were not anxious at all as the water sparkled around them! The real “high point” for Isaiah was suiting up in Andrew’s goalie gear and playing hockey with some “real” Canadian hockey players!! Isaiah had a chance to block a lot of shots and savored every moment of the street game --gear and roller blades included. The look on Isaiah’s face was hard to describe. Serious, but yet satisfied and happy. Thank you Kim, Sam, Brittany, Leah and Andrew for your hospitality. As always, we had a wonderful time. Hope to see you here in a couple months so we can enjoy the beautiful colors of the Michigan fall.

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Please keep the following precious children and their families in your prayers. They are: Sean, Adam, Cody, Tommy, Cameron, Cole, Carson, Jordan, Trey, Andrew, Madi (could use some specific prayers as they have found a “bad marker cell” that needs to be taken care of ASAP http://www.caringbridge.org/nc/princessmadison/ , and Malcolm (who’s just undergone his 2nd transplant), http://www.caringbridge.org/va/malcolm/. Tommy is facing a third transplant. http://caringbridge.com/ca/bennettboys. Isaiah’s friend Alex had a dramatic drop in platelets this past week, which necessitated an unscheduled bone marrow aspiration (BMA) not to mention the worrying it has caused. It does not appear to be a relapse but further testing needs to be done to determine what is causing this sudden drop, http://www.caringbridge.org/ca/alexschwab/ .

Please don’t forget to sign our guest book! We really appreciate knowing you stopped by!! Thank you to those who have left us messages --it means so much!!!

THANK YOU for your prayers. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Monday, July 14, 2003 11:51 PM

Day 230

Grandpa and Grandma from St. Louis were here for the weekend and just left this morning. It was so nice to see them and visit with them. It has been 2 years since we had a chance to get together!!! We just stayed around the house and relaxed but did go down to visit Nana (Pat’s mom) for dinner on Saturday. We all had a wonderful visit and of course Nana once again prepared some gourmet food that everyone enjoyed!!! Isaiah and I picked some raspberries and blackberries in her yard and he commented on how much fun it was. He enjoyed some of the fresh raspberries. He has been craving them for months. We were sorry to see Grandpa and Grandma go this morning --there’s never enough time to catch up on everything!!

Isaiah is doing well medically speaking. He has a lot of dry bumpy skin. We are not sure if it is a touch of GVH (due to steroid reduction) or just plain dry skin. We are applying steroid cream hoping that it will take care of it. Our labs were O.K. this week. Platelets steady at about 250K but magnesium is falling slowly. So we’ve added another 400 mgs for a total of 2,400 mgs. a day! We will be able to skip this week’s clinic appointment. It still makes me very nervous not to go to the clinic. Our Doctors tell me to “just enjoy the day off”!

It seems that although the physical part of Isaiah’s recovery is going well, we are seeing some outbursts of crying and anger. Since he has handled things so calmly for so long we are want him to express himself and “get it out”, but I must admit it is hard to watch --especially when he is inconsolable. Fortunately he is able to snap out of it eventually and then act as if nothing had happened. We wonder how long this phase will last. There is never a dull moment.

For our friends in North Carolina --we look forward to seeing you soon --we miss you. Lori --thanks so much for sending the lovely pictures. They are great!! Carrie --Isaiah has said several times he wishes you could come over and play games with him. Pat and Carrie --you know how much he misses you. Our friends from Five Oaks SDA church --we think of you very often and miss you.

Isaiah and I are planning on coming for our 9-month studies in a little over a month. Isaiah can’t wait to find out if any of his restrictions will be relaxed. Isaiah and Mishael are dreaming about going to an amusement park and already have a list of rides they will be going on. Well --Isaiah at this point wants to just to go to the grocery store so badly! He begged me to take him the other night. I wish he could go instead of me!!!

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And finally, it is with great sadness that I write this. Jillian http://www.caringbridge.org/fl/jillian passed away last week, as did Douglas http://www.caringbridge.org/co/nicollbrothers/.

It was a very sad week for us; please continue to keep the families in your prayers. Also, Jacob is having a hard time http://www.caringbridge.org/va/jacob/. Please remember the following children as well. They are: Alex, Sean, Adam, Cody, Tommy, Cameron, Cole, Carson, Madi, Jordan, Malcolm (who’s just undergone his 2nd transplant) http://www.caringbridge.org/va/malcolm/and Tommy who is facing a third transplant http://caringbridge.com/ca/bennettboys.

Please don’t forget to sign our guestbook! We appreciate knowing you stopped by!!

THANK YOU for your prayers. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Sunday, July 6, 2003 9:39 PM
Day 222

I am off my Friday update schedule --sorry. Independence Day just got in the way!!!

We spent the 4th at my cousin Becky’s cottage at Pleasant Lake. As usual, it was a very pleasant day visiting with family. The boys had a great time playing with everyone there. Mishael swam in the lake as Isaiah tried to catch fish with a big net off the dock --and then off the boat. Isaiah quietly reminded me that last summer I had promised him he could go tubing this summer. Indeed I had, but unfortunately I could not fulfill that promise. Isaiah relapsed 18 days after that promise. It made me sad that it’s another summer that he can’t go swimming. But on the bright side --we will be able to look forward to next year!! Nevertheless the boys and adults had a great day. That’s not to say that I was in my comfort zone. There were more people than we have been around in a long time. Numerous times I asked myself --should we be doing this??? Mishael and Isaiah needed this interaction with other children (even though most of them were teens) so much! The kids were so patient with the boys. As darkness fell we enjoyed the hundreds of fireflies that lit up over the fields --just like every year. I liked the reliability of those little bugs -it gives me a comfort in an odd way. We knew it was time to go when the neighbors lit the bonfire and the smoke was wafting through the cottage. Fires are a definite NO because of something they emit. The fireworks were all over by then. Isaiah finally got over his fear of fireworks. He even had some fun with sparklers this year!

The next day we went to Nana’s house for the first time since we’ve been back. We had a really nice time and as usual Nana’s cooking is better than any restaurant --and certainly better than mine. We all enjoyed a wonderful dinner together and then headed back home. We’ve had some stormy weather this weekend and had an old elm tree fall. Fortunately it was nowhere near the house. Today, Sal and Mishael did a lot of cutting and picking up. Mishael was a great helper. They really worked so hard to clean up all the branches and twigs that were scattered. They are two tired guys.

Another milestone this week is that we were able to skip our midweek clinic visit! This was pretty scary and I have to admit I felt that perhaps I had made some mistake because for the last 32 months we have been in at least every week. Everything revolved around clinic day(s). Even our Wish Trip was scheduled around our clinic days. I think we could get used to a new schedule quite easily! Isaiah’s heartbeat remains rapid. Dr. K. is not too concerned. I know as Wednesday approaches we will anxious again to see what the blood counts and labs look like.

We’d like to thank Bill Faller (who worked with Sal last year) for taking the initiative and some kind people at EDS who are offering to help make Isaiah’s clubhouse happen. It is just in the early planning stages. There are still some logistics to work out, but we are narrowing it down. We appreciate very much all who have offered to help. Isaiah is already dreaming of painting it blue --on the inside. Mishael loves red so he wants it red!!! I think that we will have to have a family vote on this one.

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And again, please continue to keep Jillian and her family in your prayers. Jillian has developed pneumonia http://www.caringbridge.org/fl/jillian and it is very difficult to treat at this point. Jacob has also developed pneumonia http://www.caringbridge.org/va/jacob/ Please remember the following children as well. Thank you. They are: Alex, Sean (who has gone to Italy --but lives in Chile), Adam, Cody, Tommy, Cameron, Cole, Carson, Madi, Jordan and Malcolm (who’s had his 2nd transplant but the cell count is going in the wrong direction), http://www.caringbridge.org/va/malcolm/ . Tommy is facing a third transplant. http://caringbridge.com/ca/bennettboys.

THANK YOU for your prayers. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Friday, June 27, 2003 9:40 PM CDT
Day 213 - 7 months post transplant!

Isaiah got a haircut today at Tina’s!! His hair was getting long, curly and a bit unruly so he really wanted a trim. He really likes it --apparently the “curls” were starting to bother him! Can you believe we’re talking about a hair cut!!!. Six months ago he didn’t even have eyebrows or eyelashes!!!!

It has been another quiet week. The boys have still been discovering their toys and “treasures” that they had left at home while we were away. I almost wish we had disposed of some of their things before they “rediscovered” them. Now it is extra difficult to part with them. I have managed to plant some annuals --well actually more than usual. I guess I need the therapy that pretty and colorful flowers provide!!!

Our weekly clinic visit went well but we do have a potential issue. Isaiah’s heart rate has gone up significantly from his normal rate. Our Dr. here was a bit concerned --not because of the rate itself but the fact that it was not Isaiah’s norm. We emailed Dr. K. (and after what seemed like an eternity -late the next day [very unusual]) she replied saying that she feels he’s O.K. although she doesn’t know what is causing the higher rate. Perhaps some drugs? We are supposed to log the heartbeats at least 4 times a day. With that heart “knocking” so many times --it’s really “kinda” scary especially when we can’t pin-point the reason for the increase. Well, one day at a time...

I would like to finish this update with an article that was in last week’s Flint Journal. Liz Shaw, who has written all the articles about us (and always explains things so well) really portrayed Isaiah as the “character” that he is. This time the article had some lighthearted moments and I thought it would nice to share it.

Family hopes for happy ending to story of son's stem cell transplant

MUNDY TOWNSHIP
THE FLINT JOURNAL FIRST EDITION
Sunday, June 22, 2003
By Elizabeth Shaw
JOURNAL STAFF WRITER

Mundy Twp. - The sun is shining and it's raining.
Isaiah Bingham, 7, stands on the driveway outside his house, peering up at the sky from beneath his street hockey helmet.
"Hey, there's something strange about this," he says, squinting his eyes and grinning as the random raindrops strike his cheeks. "I've never seen that before."
Pat Bingham smiles. She knows the world holds many things her son has never seen.
But hopefully now, he'll have time enough to see them.
It's been more than 200 days since the stem cell transplant that was Isaiah's best hope in a battle against leukemia - a battle that first gained notice in March 2001 when the family made a public plea to find a bone marrow donor.
The Binghams returned to their Mundy Township home this month after the grueling treatment and transplant process that began in October at Duke University Medical Center in North Carolina.
But Pat Bingham is still counting each and every day.
"I've asked myself why this story should be written, why the Binghams? And I realized it's because I just want people to realize there's a lot of hope out there," she said. "Isaiah is an example of hope."
This week, the six-month test results showed the donor cells are continuing to thrive and produce healthy blood cells in Isaiah's bone marrow.
The tests also detected no return of the Philadelphia chromosome - the rare cellular abnormality that makes Isaiah's body keep producing leukemic cells despite numerous rounds of chemotherapy.
From Isaiah's point of view, however, there are bigger fish to fry. Aside from weekly clinic visits to monitor his blood cell count, his main concern right now is trying to win a Disney radio contest.
"You listen for the code word and you enter it online or call. The grand prize is a trip to the Caribbean," he explained. "I just hope we win. We'll be able to pet dolphins and you get to go scuba diving."
Isaiah's still taking 11 medications daily in a carefully choreographed chemical dance. Drugs to suppress his immune system must be offset by antibiotics and intensive vitamin therapy. Another medicine counteracts the high blood pressure caused by the steroids, which have also enlarged the tissue in his heart.
His skin always will be more sensitive and more prone to cancers due to all the radiation he's had. He still has to wear a mask in public to shield him from germs and mold spores.
But Isaiah doesn't worry too much about all that.
"I want to play hockey, but why do I have to go through skating lessons first? I'll be 10 by the time I'm able to play," he complained, shaking the thick brown curls on his head. "The only thing I still need is a goalie mask. That's what I'm aiming for."
It will be years before there's any degree of real certainty about Isaiah's "cure." They've seen far too many of their transplant friends do just as well, Bingham said, only to relapse or die. In the transplant world, no one ever says they're doing great.
"You don't say great. Say I'm doing well.' Say I'm doing really well.' That doesn't mean I'm doing great,' " Isaiah said.
When asked if life is back to normal now, Pat Bingham's face furrows in a thoughtful frown. Then she smiles.
She isn't sure what normal is anymore, or if it means the same thing to her family as it does to most of us.
"It's a horrible world we've been thrust into. But there are some great stories, too," Bingham said. "We just want to be one of them."
***
Elizabeth Shaw covers Flushing, Swartz Creek and western Genesee County. She can be reached at (810) 766-6311 or eshaw@flintjournal.com.
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And again, please continue to keep Jillian and her family in your prayers. Jillian has developed pneumonia http://www.caringbridge.org/fl/jillian. Please remember the following children as well. Thank you. They are: Alex, Sean, Adam, Cody, Tommy, Cameron, Cole, Carson, Madi, Jacob, Jordan and Malcolm (who’s getting ready for transplant #2), http://www.caringbridge.org/va/malcolm/ Tommy is facing a third transplant. http://caringbridge.com/ca/bennettboys.

THANK YOU for your prayers. We praise God for his goodness and the blessings and strength He gives us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Friday, June 20, 2003 11:55 PM EDT
Day 206

Thanks for stopping by to check in on us!!! We really appreciate your notes in the guestbook.

Our “spark plug” Mishael came back from camp last Sunday. He had a really nice time but had bruises and scabs all over. Apparently his bike “threw him off” and then landed on him. At least everything was healing well and it’s one of those lessons most of us learn at one time or another.

The day Mishael was coming home from camp, Isaiah was very busy with his lemonade stand. It had limeade, berry punch and lemonade. Of course Isaiah was “charting” to see what was the favorite and also doing some financial calculations (counting money)! It was a beautiful day --nice and sunny. We were careful to keep moving the umbrella, as he has to be very careful with the sun due to the radiation. Poor guy sat outside for hours but had very few customers. The subdivision sale was not a success this year. Hardly any participation, so this did not help us out at all. I really felt sorry for him. Some nice strangers passing by did stop, as did some neighbors --and others didn’t…oh well. But, Isaiah had a good time and by the end of the day he was a tired boy and had some money in his cash register. When Mishael came back from camp --he helped out too and enjoyed it.

Our weekly clinic visit was longer than usual due to needing an IV of IVIG. Isaiah’s platelets took a significant drop, as did some other numbers. Of course --I was concerned!! I emailed Dr. K. It was only after we got her assurance that these fluctuations are fine that we were able to relax. Next week we will check with our Dr. here to see if he feels that we can change to a 2 X a month schedule. Dr. K. said this would be fine if he agrees. This is so thrilling because we have planned out life around clinic visits for almost 3 years!!! So, this was good news but the best news came in the evening with the results of 2 of Isaiah’s blood tests. He still is 100onor cells and there was no presence of the Philadelphia Chromosome detected. This chromosome is what causes most kids (and adults) with ALL leukemia to relapse. I have heard and read that only about 2-3f children with ALL have this chromosomal translocation. We are still waiting for his immune functions test and hope to see improvement since his 100 day test. Weight has gone down ½ lb after being steady at 50lbs. for about a month. He’s still eating well despite the reduction of steroids so we are not really concerned.

We had a nice moment the other day…Isaiah asked that we take the training wheels off of Mishael’s old bike. We had tried that before but it was too difficult for Isaiah to keep his balance so we put them back on. He has hardly ridden the bike in 2 years. Last summer he really didn’t feel up to it. I told him we would take off his wheels soon and I planned on working with him so that he could get his balance and learn how to ride. Well that evening, Sal took the wheels off and away Isaiah went --down the street. We couldn’t believe it --just like that --like he had been riding for years. What a thrilling moment for us! He’s been riding every day and as both boys have always done --they wear their helmet and pads and even little bike gloves. I’m grateful that we don’t have to remind them to put on the gear!!!!

Just wanted to mention that the Flint Journal is planning to put an article in on Sunday, June 22. If someone could save us their copy (when done with the paper) we sure would appreciate it. As soon as the article comes out we will put a link on the website.

And again, please continue to keep Jillian and her family in your prayers, http://www.caringbridge.org/fl/jillian and baby Jordan http://www.caringbridge.org/il/jordan. Please remember the following children as well. Thank you. They are: Alex, Sean, Adam, Cody, Tommy, Cameron, Cole, Carson, Madi , Jacob and Malcolm (who’s getting ready for transplant #2) http://www.caringbridge.org/va/malcolm/ Tommy is facing a third transplant. http://caringbridge.com/ca/bennettboys.

THANK YOU to all who have been praying for us. We are so grateful to our Heavenly Father who has given us the strength and is with us always.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22
Day 206

Friday, June 13, 2003 11:22 PM
Day 199

It has rained and rained. Mishael went to church camp last Sunday (for the week) and Sal took Isaiah along for the long ride up north. Of course, Dr. K. approved this months ago as I anticipated that he might want to go along. It has been 3 long years since Isaiah has been to this camp. We are anxious for the day when we can once again go for the week of “family camp” during the “dog days” of summer! Perhaps next year he can join his brother for camp! Wouldn’t that be wonderful too! (I can already see myself worrying all week.)

We had hoped to do some fun things this week but the weather has not cooperated. The house has been rather quiet without our little “spark plug” --Mishael. Isaiah and I planned to going mini-golfing yesterday with our friend Linda, but it was raining too hard. Instead we went today --but he was so disappointed that Linda could not come --he was almost in tears. Once he stopped pouting, we had fun. Isaiah beat me by quite a few strokes (even though I did have 3 holes-in-one!!!!!) and I was trying my best. We stopped by the golf store next door and saw Dr. Bob --who is not really a doctor but gave the boys some golfing lessons just before we left for North Carolina. (Isaiah has liked golf every since he was three so we were fulfilling dreams before transplant).

Despite the cold and rain, Isaiah has been having a grand time trying to enter contests on radio Disney. He only likes a few of the songs but is following the contests very closely. He’s very determined to qualify as many times as possible for that trip to the Caribbean! He keeps on asking me if I would like to go. He’s a boy on a mission!!!! He says that this is his fun for the week since there’s not too much other activity.

Our weekly clinic visit was short and counts were good. Platelets have hit 309K!!! Yahoo
The blood draw from the arm went better --I think Isaiah is getting used to it and mentally preparing himself. It seems to be working for him. Toes are looking better. Weight is stable. No results yet from the 6-month blood tests.

I wanted to say a very belated thank you to 2 young ladies and their mom Kim. As some of you know, Mishael’s birthday was only 3 days after Isaiah’s transplant. We couldn’t really celebrate together or do anything very special. All of the attention was focused on Isaiah. I managed to take Mishael to breakfast on his birthday, which he (and I) enjoyed immensely. When the mail came that day he was hoping for a package --but we were not expecting any and I told him that. But there it was --a package from you!!! The look on his face when he got your package was priceless. Thank you so much Kaila and Katie for thinking of him and most of all for your prayers for Isaiah. God bless you.

Please continue to keep Jillian and her family in your prayers, http://www.caringbridge.org/fl/jillian and baby Jordan http://www.caringbridge.org/il/jordan. Please remember the following children as well. They are: Alex, Sean, Adam, Cody, Tommy, Cameron, Cole, Carson, Madi and Malcolm (who’s getting ready for transplant #2) http://www.caringbridge.org/va/malcolm/ Tommy is facing a third transplant. http://caringbridge.com/ca/bennettboys.

THANK YOU to all who have been praying for us. We are so grateful to our Heavenly Father who has given us the strength and is with us always.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Friday, June 6, 2003 11:23 PM
Day 192

Rain, rain go away --please come back another day.…is this really June? It’s hard to believe that it has been about 10 days since we’ve been back. It has been busy at home yet it seems that I am unable to get anywhere with my attempt at organization. I think that there should be a session before you leave Duke called “how to get on with you life once you are home”. In all seriousness, there must be something called post-traumatic stress -because it is very real and something that needs to be dealt with. I think that the last 7 months is catching up with us. The reality of the situation is that this experience of transplant is almost like “science fiction” to me and sometimes I can’t believe we went through all that we did. It is really scary if you think about what really occurred back on that unforgettable November day last year. If you have been following our journey (and the journeys of others) you probably know what I mean. I must say that it really is a miracle to be home.

We have not gone anywhere but the clinic since we have been home. (Well we did get gas today and we went through the car wash --that was quite thrilling for the boys!!) Since the weather has been so rainy and cold for the most part -- the boy’s time outside has been very limited. A few days ago, during a sunny afternoon, the boys decided to take out their little skateboard scooters (that you push along) and have a competition to see who can do the best tricks!!!! As soon as I got wind of what was going on, I had to put a stop to that --especially after Isaiah failed to stop at the curb and flew onto the neighbor’s lawn. Isaiah, knowing my worries, quickly got up and waved to tell me that he was fine. Whew!!! Fortunately they both had all the gear on. As soon as they were done with that, they put on their roller-blades. I have to add that they don’t have a lot of experience with either the scooters or roller-blades. Never a dull moment.

Our weekly visit with our Drs. went well. The blood draw did not go as well. There are new rules for blood draws at our hospital and it seems that the new procedure has not been “refined”. We have to go to the phlebotomist station now instead of the little lab where the lab technicians used to take care of the blood draw. The draw from the arm was so traumatic for Isaiah that when his nurse checked his blood pressure and heart rate --they were on the high side. By the time we left --they were within normal range. Counts were good and platelets have hit a high of 300K!!! Hemoglobin has gotten to a decent 11.9. Toes are still a problem but we are trying our best to take care of them so we don’t have to go to surgery and have any nails pulled out. OUCH!! Weight is stable.
We are still anxiously awaiting the blood results from 6-month testing (from Duke).

Please continue to keep Jillian and her family in your prayers so that the relapse protocol will take care of what it needs to do. http://www.caringbridge.org/fl/jillian. Please keep baby Jordan in your prayers too --he had his spleen removed Wednesday, (he’s barely 6 months old!!!) http://www.caringbridge.org/il/jordan. Please remember the following children as well. Thank you. They are: Alex, Sean, Adam, Cody and Tommy. Tommy is facing a third transplant as he has lost his donor cells (http://caringbridge.com/ca/bennettboys.

THANK YOU to all who have been praying for us. We are so grateful to our Heavenly Father who has given us the strength and is with us always. Please know that your prayers mean the world to us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Friday, May 30, 2003 3:45 PM
Day 185 We are home!!!!!

We arrived home safely and soundly after a long 17-hour trip (lots of stops) over 2 days. The fragrant lilacs are in full bloom -- they are late this year. Must have been waiting to welcome us home!!! We are so blessed and happy to be returning home. However there are so many things we will miss about North Carolina. Not to mention the wonderful people we met while there.

We had a very busy weekend packing and preparing to come home. Mishael and Isaiah both finished school on the May 23. Both did well and we are very pleased with their progress. Mishael will be in 4th and Isaiah in 3rd grade in the fall. Isaiah will not be able to attend school at least until next January. They are already enjoying their summer vacation by playing with all the stuff that they left at home.

We unpacked the UHAUL and van immediately upon returning home. There was so much stuff --we have no idea where it really came from! Our living room is full of boxes. Now the challenge is to put it away. This will take a long time as our house seems to have gotten smaller.

The morning after our return was clinic day for us. It was so good to see our clinic “family” and Isaiah’s Dr. We also visited the nurses in 2 east just to let them know that we are back! Dr. Inoue was pleased with how Isaiah looked and with his labs. Isaiah’s counts were stable (as is his weight) and his platelets have risen to an incredible 280K!! He has some problems with his toes and if they get any worse he might have to see a surgeon (for surgery). I hope we can manage to keep any infection away so that no incisions are needed! We are still awaiting the blood results from 6-month testing (from Duke). Perhaps we will hear something soon. We pray that all the results will be good.

I wanted to let y’all know down south (and to the west) that we miss you very much!! Toni --you were not crazy for telling is that we would miss “this place”. I knew that would be the case even before we left!

Jill, Alex (Isaiah’s playmate) and family went home to California the day before us. Jill --it wouldn’t have been the same without you. Glad you didn’t leave much before us!!! Thanks for everything.

Carrie -- as Isaiah said --you are the best “best buddy” that he could have had. Thanks for all the times you visited and played with them --you know that both boys adore you. Thanks for the help with packing (and Mike’s help too)!! I would have had to pull an all-nighter if it wasn’t for your help!

Josefa and General -- Thank you for taking us under your wing and taking such good care of us in so many ways. We love you.

Doug and Leslie --thanks for the wonderful memories the boys have of spending time with you.

Pat and Carrie --thank you for your patience with the boys, for the wonderful memories of “game nights” and letting Isaiah come over to play. You know how much he loved to visit.

Thank you to Pastor Strydom and Five Oaks SDA Church Family and all the prayers that lifted our family up in prayer. We felt those prayers as we went through some very dark hours. Please keep us in your prayers as our journey is taking a different turn and the road is different but long. Also, we appreciate the Five Oaks school family and the Popescus for their dedication in teaching the children. What a blessing to have the school and so close to where we lived!!!

Thank you to all the transplant families for sharing your lives with us. I have learned so much from so many of you. I check up on you all the time (am a bit behind right now) but please know that you are in our prayers.

I will try to update the site regularly even if there’s not much to say!

Please continue to keep Jillian and her family in your prayers so that the relapse protocol will take care of what it needs to do. http://www.caringbridge.org/fl/jillian. Please keep baby Jordan in your prayers too as he is having some difficulties http://www.caringbridge.org/il/jordan as is Cody www.forcody.com. And please remember the following children as well. Thank you. They are: Alex, Sean, Adam, Tommy, Jill, Cameron, Douglas, Tucker, Jacob, Cody, Trey and Cole
Don’t forget to let us know you stopped by! We will put some new pictures up shortly.

THANK YOU to all who have been praying for us. We are so grateful to our Heavenly Father who has given us the strength and is with us always. Please know that your prayers mean the world to us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Tuesday, May 20, 2003 11:29 PM EST
Day 175

Well Isaiah has gained a pound! The steroids have kicked in and the appetite is back almost in full force!!!

Today was our last appointment at Duke until August (for our 9 month checkup). We had our IVIG, an echo of the heart, a pulmonary function test and a chest x-ray. Also nurse Sarah spent 7 minutes filling vials of blood for a myriad of tests. I didn’t watch because I didn’t want to faint --it was a large quantity of blood! We pray that all tests will come out with good results. Isaiah’s labs and blood counts were fine and Dr. Kurtzberg has released us to go home!!!!!!!!! Isaiah’s only question today for Dr. was if he could go bowling this summer and then plays on his league in September. Dr. K. said that as long as the bowling alley is next to empty, he wears his mask and uses his own ball -- he can bowl during the summer. That made him so happy!! August’s test results will give us a better indication of where his immune system stands and if Isaiah can proceed with his bowling plans in the fall.

One of our big activities of the week was going to Isaiah’s school end-of-the-year party. It was held at his teacher Elaine’s beautiful house. Marshall (Isaiah’s other teacher) was there to help entertain --I mean host the three boys --Isaiah, Malcolm and Sean. Parents were also invited to the pizza party. The boys had a treasure hunt in the wooded garden. What fun they had following the great clues! That was followed by a game of croquet, delicious pizza and finally a piñata that refused to give up its candy until the very end! All in all the boys had an absolute BLAST!!! The parents really savored every moment just watching the boys have fun together out of the hospital and clinic setting. A BIG thank you to the wonderful teachers that have made such a positive impression on the boys (and parents) and for a most memorable lovely afternoon!!!!!!!!!

Our other special activity was attending Emily’s 4th birthday party (Alex’s sister). The four kids enjoyed running around and playing together like children should. It wasn’t long ago that Alex and Isaiah could hardly walk a few steps before getting winded and needing to rest. They felt so bad at times that they could hardly even play together. What a long way they have come. What a blessing and joy to watch. We all enjoyed very good pizza and delicious cake. Oh yes --we had some Goodberries custard too. Wow is that good stuff!! Jill, Alex and family are leaving (for the West Coast) at about the same time we are. We will miss them very much and look forward to seeing them at our 9-month check up.

So we are really heading home… Sal will come on Friday and we will pick up the UHAUL we will pack then on Monday we are on our way. We have all grown very fond of this place and will miss a lot of people when we leave. When we left home we told the boys that we were going on an adventure. It certainly has been just that. We decided to really “live” here for whatever length of time we were to stay. We have made a lot of great memories to take home with is and many of the difficult moments have started to fade. We thank the dear Lord that we are all going home together.

I wanted to mention that Isaiah’s photography teacher Michelle has put together Isaiah’s photos (very nicely) and they are hanging in section 1E (Physical Therapy) in the Duke Clinic, which is right next to radiation. All the student’s work is on the wall there. It’s very interesting to see all the pictures so please stop by if you’re in the area. Thanks Michelle for being the best teacher for Isaiah!

Please continue to keep Jillian and her family in your prayers as they take the next course of treatment for her relapse. http://www.caringbridge.org/fl/jillian. Please remember the following children as well. Thank you. They are: Alex, Jordan, Sean, Adam, Tommy, Jill, Cameron, Douglas, Tucker, Jacob, Cody, Trey, Madi and Cole
I will try to update before we go home. Please check the beach pictures out. In a few days we will put the party pictures up. Don’t forget to let us know you stopped by! Thanks.

THANK YOU to all who have been praying for us. We are so grateful to our Heavenly Father who has given us the strength and is with us always. Please know that your prayers mean the world to us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Tuesday, May 13, 2003 10:39 PM EDT
Day 168

Well let me get to the medical things first. Today’s clinic went pretty well. Isaiah has lost a few more ounces despite eating more. His appetite is decent but the headache of the day is what to feed him. Very few things sound good. But, we are managing (after numerous tries) to find things to eat. Dr. K. increased the steroids again --just a little bit. Platelets have risen to 224K, which is really great. A few days ago,we had another bout of vomiting. This time it was coming out of both ends. Isaiah felt so bad he could hardly wait to get to sleep. He finally did and rested well. Today his magnesium was low --perhaps because of the additional stress of losing all the fluids a few days ago. We were hoping to get out of the clinic early afternoon --but due to Isaiah needing IV magnesium we finally left at 4:30. It was a long day.

Nana left last week after a 2-week stay that seemed to whiz by. There’s no one to spoil us --at least for the moment --until we go to her house! We’re so glad that she was able to come and visit us --especially during this time where Isaiah has been feeling pretty well. The day after Nana left Sal arrived for a weekend visit. We had a really nice time being together. On Mother’s day, on a whim we packed up and drove over to the coast. I have wanted to go ever since we got here in the fall but we just didn’t get around to it. We got in the car on Sunday and just drove. It was about a 3-hour drive. We saw lots and lots of pine trees on the way and not much else! It was a warm and humid day --but at the beach there was a lovely breeze. We did a bit of exploring on the pier and at the end of the “road” and then it was time to turn back and come home. Unfortunately the boys were dreaming of making sand castles but we just couldn’t let Isaiah do that (at least not until the Dr. gives the O.K.) so we didn’t even venture onto the sand. Building sand castles sounds like the most normal thing to do on the beach but we can’t even do that!

We are planning on leaving for HOME Memorial Day weekend. The boys just cannot wait!!!!!!!! Now if the packing “fairy” would come around and pack for me I would just love it! As much as the boys are looking forward to going home they will admit that they have enjoyed their stay here. It certainly has been an “adventure” in many ways. Isaiah wants to come back to visit more often than on his “scheduled” Dr. appointments because he wants to see all his “friends”. This (I think) is a good sign because that means he has had some very special (and good) memories that he can take home with him and treasure. And knowing this nostalgic little guy, I know he will…

On another subject, I have a favor to ask of anyone who can and would like to help. Last summer, Sal planned on building a tree house for the boys. Isaiah was ecstatic. Of course due to circumstances they were not able to do that. Sal would like to try again this summer. We were wondering if anyone knows where we can get some “plans” for a nice little tree house or clubhouse?? Sal has tried to do some research but hasn’t had much success. Does anyone know where to get some good (and relatively simple) plans? If you have any ideas, please email us at patricib@umflint.edu. Thank you.

Please continue to keep Jillian and her family in your prayers as they take the next course of treatment for her relapse. http://www.caringbridge.org/fl/jillian. Please remember the following children as well. Thank you. They are: Alex, Jordan, Sean, Adam, Tommy, Jill, Cameron, Douglas, Tucker, Jacob, Cody, Trey and Cole
Thank you for checking up on us. It really is still very odd sharing our lives with so many but I hope that it has been a meaningful experience for you. If it made you hug you children and family members more --then it has been worth it. If you have recognized that the things you thought were so important --really are not. If you have thought about how so many “things” are meaningless and most of us just have too much anyway. If you have enjoyed the sunshine more, and taken more time to smell the flowers then that makes me happy.

THANK YOU to all who have been praying for us. We are so grateful to our Heavenly Father who has given us the strength and is with us always. Please know that your prayers mean the world to us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Monday, May 5, 2003 5:31 PM EDT
Day 160

This week’s clinic went pretty well and we were there for only half the day. Isaiah has lost another pound and half and is down to about 48 pounds. Dr. has increased his steroids to see if it will stimulate a little bit of an appetite. He is still taking less than a maintenance dose of steroids (meaning what his body naturally produces). His platelets have risen to 159K -- this is the low end of NORMAL!!!! Yay!!! The Labs looked fine, as did chemistries. As of Sunday --his appetite has increased, a little bit. It will be interesting to see if his weight is holding. Tomorrow is our BIG clinic day. We are off of IVIG for the next couple weeks --probably until we go home.

Speaking of home, we are still planning on coming back at the end of May (God willing). I would like to ask those of you who see Isaiah to know that he does look different than when he left. He does have lots of hair due to one of his drugs. This will eventually fall out and then we pray that his “own” hair will grow in. To us, he looks really good considering what he’s been through these past 9 months. But please, when you see him (how can I put this delicately) -- PLEASE don’t tell him that you feel that he is cured based on what you see. Only God knows that. Besides, he has heard it before and he relapsed. I’m sure you understand…

We’ve been enjoying our time with Nana. Nana took us out for dinner during the week. It was a beautiful day and we dragged the boys out. We went to “our“ outdoor restaurant but were a bit disappointed that the dinner menu didn’t really include much for vegetarians. Isaiah had found something on the menu and had already unrolled his napkin and was ready to eat so we didn’t dare try any other place. He enjoyed half a peanut butter and jelly sandwich. The first one he has eaten in about 8 months!!!!

On Saturday morning, Isaiah and my mom went to the Rainbow of Heroes Walk. This is an annual benefit walk for the Duke BMT Family Support Program. (A program that has made this journey more bearable for every family that comes here for treatment). It also honors all the children who have been transplanted in the past years. It is a bittersweet time because it celebrates life and honors those who have passed away.

Mishael and I came later, but just in time to catch the closing activities. Isaiah ran over to tell me that he was so happy to be there. He managed to walk/run 12 laps (I heard). This is 3 miles!!!!!!!! I have to admit I was impressed. We hadn’t even talked about him walking! I was pretty amazed that he had the stamina. My mom said that he was so DETERMINED. He did what HE set out to do. Isaiah was really glad to see some of his nurses from the Bone Marrow Unit and told me he took their picture. (Suzanne --we really missed seeing you!!!!) He said he wanted to come back next year again he enjoyed himself so much.

On Sunday morning we went to the mall for a Build-A-Bear Party. Yes, I did say the mall!!!! Of course it was 2 hours before the mall was to open, and the kids wore their masks the entire time. Mishael and Isaiah both chose a turtle and stuffed it and gave them a name and birth certificate. They are so cute (the stuffed animals that is)! The boys and another family (Tommy and his brother Hunter) were there. I think they all had a BLAST! After they were done, we went to the food court where the boys were treated by Mrs. Fields Cookies, Haagen Dazs, Auntie Anne’s Soft Pretzels and U.S. Bistro. They were very full by the time we left. Thanks to these wonderful organizations for helping make our outing so SPECIAL. We really appreciate it so much and the food was delicious. (O.K., I admit, I had to sample it!!!) Thanks Alyssa and Alicia for setting it up!!!! It was great!!!!! Also, the Build-A-Bear personnel were so kind to open up early for the BMT kids to come and have some fun. I heard they are planning on doing this every couple months or so. I will post some pictures (soon) from our party so that y’all can picture what I’m talking about.

Isaiah and I also had the privilege of talking on this year’s Children’s Miracle Network Radiothon in Flint, MI last Thursday. Yesterday, (Sunday) Isaiah was interviewed again by himself. He did a nice job and was so HAPPY to hear the phones ring after the phone call to him. He was just beaming from ear to ear. Thanks to CK105.5 for supporting CMN once again and for involving the Binghams. Isaiah is already asking when the CMN picnic will be!!! He said he can’t wait. (Linda --are you planning the picnic yet???)

Tonight we have a special outing (arranged by Jill). Thanks Jill for all your work. The boys are looking forward to it. More on our outing later this week…

I wish I didn’t have to end this on such a sad note, but our friend Travis passed away last Tuesday. It really breaks my heart once again. Please keep his family in your prayers. I can just picture him and Isaiah in the lounge (on the BMT unit), playing CLUE. I prayed that they would get together and visit after they were both released and just have some fun together despite the age difference. His website is: http://www.caringbridge.org/hi/twilliams. Also, please keep Jillian and her family in your prayers as she has relapsed http://www.caringbridge.org/fl/jillian. Please remember the following children as well. Thank you. They are: Alex, Jordan, Sean, Adam, Tommy, Jill, Cameron, Douglas, Tucker, Jacob, Cody, Trey and Cole
Thank you for checking up on us! Please let us know you stopped by!

THANK YOU to all who have been praying for us. We are so grateful to our Heavenly Father who has given us the strength and is with us always. Please know that your prayers mean the world to us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Friday, April 25, 2003 11:43 PM EDT
Day 150

It has been a busy week. It was so nice spending time with Daddy --although quite hectic as we spent a lot of time packing and loading. On Easter Sunday, we were surrounded by boxes so it was quite a mess. We did manage to have special dinner together which was nice --despite the fact that Isaiah got sick again later in the evening. It isn’t my cooking --really!!! Sal made it home safely --although it was a very long drive and construction (in addition to many miles) was partly to blame.

Well last week I worried about Isaiah’s weight. This week it was the main topic of conversation during our clinic visit with Dr. K. Our main goal now is to keep him steady (he’s less than 50 lbs), or to gain weight. It really has been and is a challenge. Dr. K said that she would really like to avoid giving him any medicine to stimulate appetite (they are available). I agreed --although I saw Isaiah’s eye’s light up at the possibility of using an “appetite stimulator”! We told him that at this point more medicine is not the best option. Labs looked fine as did chemistries.

After clinic, Isaiah asked if we could go out to lunch. I couldn’t believe that he actually wanted to go!!!! A few days before, we had passed by this nice restaurant with outdoor seating and checked to see if they had a Kids’ Menu. Since they did and there were a few things that Isaiah liked on it --he thought it would be the perfect place to go to. I was so surprised (and pleased) that HE wanted to go. The weather was nice, it was mid afternoon --so we knew that hardly any one would be there at 3:30 --it was a great time to go. I have to admit it wasn’t the best experience --especially when they served him the pasta w/marinara sauce and it was “stone” cold. For a transplant patient --food freshness is SO important. Isaiah didn’t realize it was cold (plate was actually warm) until he put it in his mouth. He said it tasted so bad. Unfortunately that just ruined his appetite --just what we didn’t need. (I was so disappointed). But, he continued to hum, and he was cheerful and content. Actually asked if we could do this again. He didn’t let it ruin his mood. He said that he was “so happy” because this was his first time out to eat in six months!!! I think there’s a lesson to be learned (and I did) from this 7 year old. Some things you just have to let go and move past. Don’t let it ruin the moment.

On Wednesday, my mom, the boy’s Nana arrived. We were all thrilled to see her. Nana will be spending a couple weeks with us and maybe her wonderful cooking will help with Isaiah’s appetite. The boys can have some very special times with Nana --we’re so grateful for the opportunity!

For those of you in the Flint (and surrounding) areas, please make a note that the next Children’s Miracle Network Radiothon will be May 1-4, 2003 (Thursday through Sunday) on CK 105.5 FM. I could just go on and on about what the donations from past radiothons and telethons has done for Hurley hospital and the community. Hurley Hospital is just a gem and we are so fortunate to have it so close by. The doctors and nurses that have treated Isaiah for the past few years are just tremendous. O.K. back to the radiothon…. PLEASE TUNE IN!!! We (Isaiah and I) will have the opportunity to participate for the third time. What a privilege! Right now we are scheduled for Thursday (May 1) between 10:30 and 11:30 but it’s subject to change. I will post more info later.

I would like to ask you prayer warriors to please still keep some of our friends in your prayers along with Isaiah. Travis is still in PICU but seems to be doing a little better. Everyone can’t wait until he makes it from PICU back to the transplant floor. That’s usually a huge step in the right direction.. His website is: http://www.caringbridge.org/hi/twilliams.
The following kids are all recovering from transplants (some with great difficulty) or facing another one. Their names are: Alex, Jordan, Sean, Adam, Tommy, Jill, Jillian, Cameron, Douglas, Tucker, Jacob, Cody, Trey and Cole
Thank you for checking up on us! Please let us know you stopped by! Thank you!!!

THANK YOU to all who have been praying for us. We are so grateful to our Heavenly Father who has given us the strength and is with us always. Please know that your prayers mean the world to us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Friday, April 18, 2003 11:59 PM EDT
Day +143

Daddy’s here!!! After a long 15-hour drive, Sal arrived last night. We were so happy to see him. I’m just relieved that he’s safe and sound and that our “ole” van made it to our doorstep! I’m afraid he brought the weather from up north too. It is cold and dreary today --such a change from the beautiful bright days we’ve had all week.

It has been a busy week even though Isaiah is on Spring Break. Isaiah had his weekly photography class with Michelle (a student who is taking a photography class at Duke). Each Duke student in the class has a child that has a medical challenge. Isaiah has his own black and white Polaroid and takes pictures of whatever he wants. Michelle and Isaiah have put together a nice little album with some special pictures. Isaiah has really enjoyed meeting with Michelle and he always convinces her to play a game with him after their work is done! Thanks for your patience Michelle!!!

We haven’t had any medical issues this week. No severe pain, vomiting, or feeling really blah (just slightly blah). Eating has been a major problem though. I worry about Isaiah’s recent weight loss. It’s a struggle to keep him at a steady weight. He has lost 2 pounds since the previous week. Finding something that he feels like eating is a real challenge. And, when we think of something, he eats just a tiny portion or just says he can’t eat it. Then we’re back to square one. Dr. K. said that it might take a year for the body to adjust and the appetite to come back. This week’s labs looked good, as did chemistries. Platelets and hemoglobin have climbed a bit --so that’s good as we’re nearing the low range of “normal”. Magnesium and Phosphorus holding…..

I wanted to explain one of the pictures of Isaiah and his lines coming out of his chest. Those catheters are used for chemo, meds, blood draws and liquid nutrition. During transplant he had three lines so that multiple things could be administered simultaneously. The lines are surgically threaded into a large vessel (vein) of the heart where they allow meds to flow into the heart and rapidly dilute and spread throughout the body. It’s pretty scary if you think about it. The lines were pulled out on day 100 as Isaiah was on all oral medications by then. The lines require constant “maintenance” and are prone to infection. Therefore a Port-a-cath was inserted under the skin (by his collarbone) with a single line going into a vein and into the heart. This is now being used for drawing blood for labs (when a larger quantity is needed) and administering IV’s, meds etc. Currently he is receiving one weekly IV on Tuesday in clinic.

On the subject of Thank You….
Thank you Ellen for sending the boys the lovely bug sticker books. We will be learning our bugs to identify them wherever we go!!! Teri and family --thank you for the gift cards. It is very much appreciated. Since Isaiah can’t go into the stores --perhaps he can order something on line -I’m sure that would be even more fun for him. Thank you also to the Waterford SDA church for your “spring” card and your prayers. Also, to the First Flint Adventurers thank you for the lovely cards. First Flint SDA School --the boys miss you all very much!! Thank you for your prayers. Gloria, thank you for your frequent cards. Mary (the fastest nurse in the world -per Isaiah) --thank you for your nice cards and prayers. Gerome --you and Mary are so special. Thank you for all you’ve done for us. We are so grateful. Linda and Tom -- thanks so much for the numerous “goodies” you’ve sent so frequently. Steven and Lou --a very belated thank you for your package. As I have mentioned before --I am very behind in my thank you’s and notes to send out. Please forgive my procrastination and know that I have every intention of following through --I just don’t know when!!!

I would like to ask you prayer warriors to please still keep some of our friends in your prayers along with Isaiah. Travis is still in PICU. His website is: http://www.caringbridge.org/hi/twilliams.
The following kids are all recovering from transplants (some with great difficulty) or facing another one. Their names are: Alex, Jordan, Sean, Adam, Tommy, Jill, Jillian, Cameron, Douglas, Tucker, Jacob, Cody, Trey and Cole
Thank you for checking up on us! Some of you have been so good at leaving us a note --thank you!!!

THANK YOU to all who have been praying for us. We are so grateful to our Heavenly Father who has given us the strength and is with us always. Please know that your prayers mean the world to us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Friday, April 11, 2003 11:31 PM EDT
Day +137

I thought it was “coincidental” that we read the story of Noah this evening. We have seen rain every day -all day for 7 days. In addition it has been quite cold. The wisteria is in full bloom and can be found along the freeways climbing gracefully up the trees or choking them --depending how you see it. I heard that they haven’t bloomed in a couple years so this is a treat for me to see so many blooms everywhere. Last Saturday -during a brief moment of sunshine, the boys and I took a walk through Sarah P. Duke gardens. The flowers were numerous and breathtaking and we really enjoyed our little hike. Then the rains came…

Sunday night Isaiah had some excruciating pain and asked to go to the clinic because he couldn’t stand it. Knowing his tolerance for pain I took him seriously. We waited for the pain to subside but it didn’t and he said he just couldn’t take it anymore so we packed up and rushed to the clinic. If you don’t make it to the clinic before 8 p.m. then you have to go upstairs to the special room in the BMT unit (if it’s available). We wanted to avoid that!!! We made it just before 8 and the nurses quickly took his vitals. The pain subsided but his blood pressure was too high. Isaiah started to feel better so we went home and took a med for his blood pressure. He slept well all night and felt fine in the morning. We still don’t know what caused the intense pains (perhaps some serious gas). I was just glad the pain was gone (always a scare) and that my visions of spending the night in the BOP room (for “observation”) with both the boys did not become reality. Whew!!

Clinic day was a medium long day. Isaiah had his weekly IV. Counts looked good (platelets climbed to 125K) which is nice to see!!! Magnesium was low but he didn’t get a boost --instead we were hoping they would hold without the boost. Potassium was high. Nurse Sue asked Isaiah if he had been eating a lot of potatoes! How did she guess???!!! Only numerous times a day --mainly scalloped potatoes. On Thursday we checked Magnesium again -- it was low but holding. We have weaned the Prednisone (steroid) again --to a maintenance dose (which is good). We have had to start the blood pressure medicine again but fortunately a low dose.

Isaiah and Alex got together this week a few times and seemed to have an extra good time putting Alex’s NBA basketball Lego set together. Alex’s mom Jill and I managed to go out to lunch with a friend of Jill’s (from CA). This was our first time out to eat in almost 5 months! It was very enjoyable and we didn’t let the rain “dampen” the afternoon. Thank you Josefa for watching Isaiah. He enjoyed the day so much!

Next week the weather should be very nice and we are looking forward to some outside activities, as Isaiah will be on spring break. Sal will be coming for short visit next week and of course we are all looking so forward to seeing daddy. This is the longest time we’ve been apart as a family. It’s hard to believe that we will (GOD willing) be coming home at the end of next month

I would like to ask you prayer warriors to please still keep some of our friends in your prayers along with Isaiah. Right now our friend Travis is having a rough time and is still in PICU. His website is: http://www.caringbridge.org/hi/twilliams. It is his 15th birthday today. Also, please keep little Douglas in prayer as today he had surgery and there have been some complications, please see http://caringbridge.org/co/nicollbrothers/.
The following kids are all recovering from transplants (some with great difficulty) or facing another one. Their names are: Alex, Jordan, Sean, Adam, Tommy, Jill, Jillian, Cameron, Douglas, Tucker, Jacob, Cody and Cole
Thank you for checking up on us! We all really appreciate when you leave us a note --so please take a moment --it doesn’t need to be long!!!

THANK YOU to all who have been praying for us. We are so grateful to our Heavenly Father who has given us the strength and is with us always. Please know that your prayers mean the world to us.
Love, Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Friday, April 4, 2003 11:04 PM EST
Day +129

It has been a busy week around here. Fortunately nothing too eventful has happened and we really like it that way. Last Sunday, Sal left for home to prepare the house for Isaiah’s arrival. He arrived home safely but won’t have much resting time as he has a list of a thousand things to do before we get home. We miss daddy very much and can’t wait until he comes down to visit at Easter.

Mishael spent the first three days of the week at home due to a number of coughs and colds and school. We really can’t take any chances of Mishael catching anything and passing it on to us. I’m so glad there are only 9 kids in the school. That makes it so much easier to monitor. The boys really enjoyed each other’s company and this made it easier for me. After all, it’s hard to get used to not having Sal with us --someone else to discipline the boys of course!!!

Clinic day was another long day. Isaiah needed another magnesium boost and had his weekly IV. His other counts looked good. He now has GVHD popping up on his arms (looks like a little rash) but we are not increasing oral steroids --just applying topical cream steroids for the moment. Dr. K. is not concerned and said that this can last up to a couple years. Well, if this is the only bump we have I will certainly take it over anything else… I asked Dr. about Isaiah’s lack of appetite (apparently, the steroid is such a low dose that it really is not affecting his appetite). Dr. said that it might be a year before the bacteria balances out and he gets his appetite back. At least Isaiah is maintaining his weight. He can’t really afford to lose any at all. He is getting more energy day by day and seems to be regaining some muscle tone --at least in his legs. He is able to run now but tires easily. At least it is less of an effort to walk longer distances.

We spent some time playing at (in) the pool at the apartment complex a couple times this week. It has been quite hot here (in the low 80’s) for a few days now. The pool water is ice-cold and has all kinds of blossoms floating on it. It doesn’t look too “germy”!!! Isaiah dangled his feet in there and did some splashing. Mishael managed to get in the pool long enough to pick up 45 cents from the pool floor. Between the pool and vending machines he has made 70 cents this week!!! He was very happy with his earnings. Isaiah and Mishael had so much fun at the pool that they talked about it for hours. Today we went mini-golfing. The boys had a great time and can’t wait to go again.

Thursday night Isaiah had another vomiting session. It was brief but a “long time coming” meaning he felt sick most of the night and it kept us up a good deal. By morning he was better. We went to the clinic only for chemistry check but ended up getting vitals taken and seeing our nurse practitioner Sue. She told us to take an “oral steroid” boost and by afternoon Isaiah was feeling much better. We tried to figure out why he felt so bad and again attribute it to having too many bites --this time of the bean burrito!!!

I would like to ask you prayer warriors to please still keep some of our friends in your prayers along with Isaiah. Right now our friend Travis is having a rough time and is still in PICU. His website is: http://www.caringbridge.org/hi/twilliams.
The following kids are all recovering from transplants (some with great difficulty) or facing another one. Their names are: Alex, Jordan, Sean, Adam, Tommy, Jill, Jillian, Cameron, Douglas, Tucker, Jacob, Cody and Cole

Thank you for checking up on us, we would like to know that you did. Please say “Hi” to us through the guestbook. We all really appreciate it!!! I will try my hand at adding new pictures this weekend.

THANK YOU to all who have been praying for us.
Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

NEWS ARTICLE HEADLINE: So far, so good in boy's fight against leukemia

MUNDY TOWNSHIP
THE FLINT JOURNAL FIRST EDITION
Sunday, March 30, 2003
By Elizabeth Shaw
JOURNAL STAFF WRITER
Mundy Twp. - Pat and Sal Bingham don't have to wait for son Isaiah's September birthday to celebrate a milestone.
The Mundy Township boy, 7, recently passed the 100-day mark since a stem cell transplant that was the best hope in his two-year battle against leukemia.

"Isaiah now has two birthdays. In the transplant world the transplant date is considered your re-birthday,' " Pat Bingham said.

The 100-day blood tests are a medical milestone anxiously awaited by many who have followed Isaiah's journey since March 2001, when the family made its first public plea to find a bone marrow donor.

The results thus far are good, Pat said from the family's temporary home near Duke University Medical Center in North Carolina, where Isaiah began the grueling treatment and transplant process in October.

"Unfortunately, I am always waiting for the other shoe to drop. I've seen it happen too many times around here in the past few months," she said. "I realize it doesn't have to happen, either, but somehow I feel that nothing can be taken for granted."

So far, it appears that the donor cells have completely taken over the job of producing healthy blood cells in Isaiah's bone marrow.

Even better, the tests detected no presence of the Philadelphia chromosome - the rare cellular abnormality that makes Isaiah's body keep producing leukemic cells despite numerous rounds of chemotherapy.

But the family remains cautious, since the cells can be notoriously difficult to detect. Last July, Isaiah relapsed two months after tests indicated he was clear of the Philadelphia chromosome.
Doctors say his immune system is still far from normal - he usually has to wear a mask to shield him from germs and mold spores. But his heart and lungs remain healthy, and he's recovered enough to play a long-awaited game of street hockey with brother Mishael, 8.

The sun can be a problem - his skin is more sensitive and more prone to cancers due to all the radiation he's had. He still receives weekly IV treatments and 14 oral medications a day, along with breathing treatments to prevent pneumonia.

But they've managed to work in some normal family fun between clinic visits, including miniature golf and a quick sightseeing trip to a local lake where the boys skipped stones along the shore.

Sal plans to return to Michigan this week to ready the house for the family's eventual homecoming. Pat and the boys will remain at Duke until the end of May, to coincide with Isaiah's six-month tests and the end of the school year for Mishael.

Doctors have yet to determine what the future course of treatment will be. Transplant complications could still arise and the long-term prognosis is still uncertain. For now, the family remains optimistic but cautious.
"Isaiah has been a real trooper throughout. He is happy, funny and compliant. Mishael wants to go home and is not so compliant," Pat joked. "But he is going with the flow and enjoying himself as much as he can with so many restrictions that we have.

"What more could we ask for?"
***
Elizabeth Shaw covers Flushing, Swartz Creek and western Genesee County. She can be reached at (810) 766-6311 or eshaw@flintjournal.com.

Friday, March 28, 2003 11:53 PM EST
Day +122

As spring has sprung and the blossoms abound everywhere we are doing our best to enjoy the spring!!!

For this week’s clinic visit we went in early hoping we could leave a bit earlier than last week. This time we remembered the numbing cream for his port and accessing it went much better. The nurse got it in the first try and she was quick!!!! The lab numbers came back and Isaiah was a bit low on some of his minerals. We got a magnesium boost which took and additional hour and a breathing treatment that we had forgotten was scheduled for Tuesday. Dr. K said that being low on some of these minerals is quite normal for the transplant kids so we upped the magnesium and added another supplement. This makes about 25 pills Isaiah swallows a day. Some are broken up because they are so big (they must use them on horses or something).

Last weekend’s weather was really beautiful so on Sunday we decided to get together with Jill and Alex (and family) and we met at a nearby park. The playscape was just full of children --so we went for a little walk instead. Alex took his mask off for the first time in months (while outside that is) during our walk and commented at how much he enjoyed feeling the breeze on his face. Such simple pleasures that we take for granted… On our way back, the playscape had cleared out --so Alex and Isaiah were able to really play on the equipment (with masks on - of course!!!!). Both Emily (Alex’s sister) and Mishael also got their wiggles out by enjoying the playscape too. It was hard to keep up with them as they were going everywhere!!!

Well that’s about all for the moment. Sorry this is so short but we are really tired from the week. I will try (once again) to update during the week. Perhaps that will be easier for everyone. We also have some pictures to post. I need to figure out how to do it!!

I would like to ask you prayer warriors to please still keep some of our friends in your prayers along with Isaiah. Right now our friend Travis is really struggling. He was moved from the BMT unit to PICU yesterday. His website is: http://www.caringbridge.org/hi/twilliams. The following kids are all recovering from transplants or facing another one. Their names are: Alex, Jordan, Sean, Adam, Tommy, Jill, Jillian, Cameron, Douglas, Tucker, Jacob and Cole. I might add that there is no child that we know that hasn’t had numerous “bumps” along this journey. It’s a hard road to be on.

Thank you for checking up on us, we would like to know that you did. Please say “Hi” to us through the guestbook. We all really appreciate it!!!

THANK YOU to all who have been praying for us.
Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Friday, March 21, 2003 11:15 PM EST
Day +115

I have sad news to share. Little Mckenzie passed away this afternoon after a very courageous fight. She was in the room next to ours when Isaiah had his bone marrow transplant. She showed us that miracles were possible over and over during her journey. She had had three bone marrow transplants back to back and was only three years old. This tough little sweetie touched so many hearts and her family showed such courage and strength. She will be sorely missed by so many. I try to be positive as we travel this road through the transplant world. It is very difficult. I spare writing the details of what we hear and see. It would just break your hearts as it has ours…

At our weekly clinic visit we went in early so that we could leave a little earlier. We were hoping not to spend the entire day at the clinic. We had a special visitor (Aunt Jane Jane --who was my roommate in college --go BLUE) who came all the way from Cleveland to spend a few days with us. I thought that she didn’t need the 9 hour tour of “Rainbow Day Hospital” but that’s what we got.

Accessing the port was first on the agenda. It didn’t start out well as I had forgotten to put the EMLA cream on. Since it takes one hour to work, Isaiah (reluctantly) decided (since time was of the essence) to let them put “freezy” spray on while they poked that needle into the port. Well, the nurse missed the port. OK it can happen --but not in the 2nd week of having the port which was bruised and sore!!! It was too early for that! We got some EMLA cream, put that on and waited another hour for that to work and for someone to come back and access his port. After all, now were in the back of the queue waiting for a nurse to come back in. Tuesdays are VERY BUSY days.

More than an hour later we got that needle in, drew the blood for labs and started the weekly IV. Sounds so easy when I write it down, but it wasn’t. There were a lot of tears and pain. I can never get used to some things and I felt pretty faint for a while. It’s hard to watch and hear your child tell you that it hurts so much. On the positive side, the lab results came in and Isaiah’s platelets went over the 100k level!! Isaiah was thrilled. He is now allowed (by Dr. K) to play street hockey (with protective gear --of course!!!!) Please check out the new photo of the “hockey player”!!!!!!!!

The results of the 100-day blood tests have come back. The great news is that one of the most sensitive tests available shows that there is no presence of the Philadelphia Chromosome in his blood! The immune tests showed that his immunity is far from normal but about where expected at day 100. Our clinic day lasted till 7 pm. By the end of the day we were exhausted. Aunt Jane Jane had taught us how to play Canasta so we passed the time doing that. Isaiah’s “best buddy” Carrie also stopped by to say hello and joined in the Canasta fun.

We managed to slip in a game of mini-golf in between raindrops on Wednesday. This really made the boys happy. They played with Aunt Jane Jane and I was the scorekeeper and photographer. With the howling wind my hands were frozen and I could hardly wait for the 18th hole!!! Afterwards, the boys went to a little toy store on Ninth Street to select a late Christmas present from Aunt Jane Jane. Mishael found some neat spy stuff but Isaiah just couldn’t find anything. (By the way, this store was approved by Dr. K. as a place where Isaiah could go provided he wore a mask). We then headed to Toys R Us where Aunt Jane Jane ran in and came out with a helmet for Isaiah and the “street hockey pads”. Isaiah was so happy when she brought them out that by the time we got home (less than 5 minutes), he had the whole outfit on! He could hardly wait to show Daddy and then ran over to our neighbors (Carrie and Pat) to show them his new hockey gear.

Wednesday night wasn’t all that fun though. Isaiah had asked on Tuesday if vegetarian corn dogs and vegetarian (chicken) nuggets could be added to his food selection. He got the O.K. and well, we think he overdid it. We spent the evening with the bucket next to the bed. After hours of vomiting, during which he said “sorry to keep you guys up”, he felt that it was over and at 3:30 a.m. he told us he was ready to take his evening meds. What a trooper! Of course these episodes are never pleasant and it isn’t until later that you figure out that it’s not a flu bug or something more serious but that he just ate too much!!!!

Well, that’s about all for now. Some of you may be wondering when we will be coming home. The boys and I plan to stay here until the end of May. This will coincide with the end of the school year for Mishael as well as our 6 months testing for Isaiah. We would have had to come back for these had we left earlier. Sal will return home soon to get back to work and also try to get the house in order and make it as safe as possible for Isaiah.

I would like to ask you prayer warriors to please still keep some of our friends in your prayers along with Isaiah. They are all recovering from Bone Marrow Transplants. Their names are: Alex, Travis, Jordan, Sean, Adam, Tommy, Jill, Jillian, Cameron, Douglas, Tucker, Jacob and Cole. If you would like to check Mckenzie’s site and Reese’s please check http://www.caringbridge.org/nc/mckenziefay/ and http://www.caringbridge.org/nc/reesecup/.

Thank you for checking up on us, we would like to know that you did. Please say “Hi” to us through the guestbook. We really appreciate it!!!

THANK YOU to all who have been praying for us.
Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Friday, March 14, 2003 11:12 PM EST
Day +108

It is with heavy heart that I start this update. On Monday, our little friend Reese passed away after a tough battle. He had just turned one year old and had his transplant a few days after Isaiah. Reese and his family were so courageous and strong. Such a blessing to so many and they touched our lives in a very special way. We miss you so much.

We had our weekly clinic visit on Tuesday and this time we were a bit apprehensive because Isaiah’s port needed to be accessed for the first time since it was put in. The poke happened quickly and went well (much to everyone’s delight) but not without a few tears. The labs look good and his platelet counts have been going up quite a bit in the last few weeks. He hopes to reach the special 100K level on his platelets because that is when he will be allowed to play “street hockey”. Of course he will have to have a helmet and some protection --Dr.’s orders!!!! Isaiah’s skin rash --GVHD (reminder: graft versus host disease occurs when transplanted cells do not recognize the patient as "self" and they proceed to attack their new host, especially the skin, liver, stomach, and intestines) has spread to other parts of his body. We are again applying topical steroids and skin conditioners and that seems to be keeping it minimal.

We are still anxiously awaiting the results of some of the blood tests that were drawn for the “day 100” tests. The only test that has come back is the “percentage of donor cells test --called a chimerism test” and that is at 99+ %, so that is great news.

Last Sunday we took a little trip to explore our surroundings. We haven’t really ventured more than a 15-mile radius from our apartment. We went to Falls Lake at Falls of the Neuse dam in Wake Forest --about 35 miles from our house. It was a glorious day and we just had to get out, although it wasn’t easy getting out of our comfort zone. It seemed like everybody had the same idea so we had a bit of trouble finding a spot to park. While we were wandering around, Isaiah tried to persuade us to go home because “his legs hurt” already. We hadn’t even stepped out of the car!!! I said no way are we going back home without reaching our destination. We found a nice place to stop and we did a bit of walking and “skipping” stones at the lake. Isaiah took it slow and the boys admitted afterwards that they had a great outing. Isaiah didn’t complain about his legs after the walk at all.

The boys have opened a restaurant at the apartment. Mom is the main cook. Isaiah is the manager and Mishael helps out with whatever is needed. They have quite an ambitious menu. We’ve had lots of fun with it and the boys have managed to make some “change” thanks to some friends that have stopped in. Even Isaiah is getting the cooking bug. He made dinner for us the other night. Of course we were very pleasantly surprised that he offered! It was his famous sandwiches that he “invented” at summer camp last year --remember those Ellen and Brent!? Potato chips and cheese on a hamburger bun. Yummy.

Well that’s about all for this time. We have lots of new pictures so please check up on us soon. They should be up by this weekend.

I would like to ask you prayer warriors to please still keep some of our friends in your prayers along with Isaiah. They are all recovering from Bone Marrow Transplants at different levels. Their names are: Alex, Travis, Jordan, Mckenzie, Sean, Adam, Tommy, Jill, Jillian, Cameron, Douglas, Tucker, Jacob and Cole.

Thank you for checking up on us. Please don’t forget to sign our guest book! A big thank you to those of you who have signed the guestbook.

THANK YOU to all who have been praying for us.
Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Friday, March 7, 2003 11:03 PM EST
Day +101

We’ve reached a milestone in our journey! 100 days post transplant! I have to admit, it has gone by fast.

Well, the flu bug must have stopped by our house. Mishael came down with a temperature on Friday evening. By the next morning he felt sicker and his temperature was higher and SO WAS OUR ANXIETY LEVEL. You just don’t know what is wrong and wonder if Isaiah will catch whatever it is. So we keep them as far apart as possible and wash hands constantly, take out those alcohol pads and wipe, use up the Lysol and pray that the germs don’t get to him and make Isaiah sick. They didn’t. Mishael is still coughing but it is less and less. Fortunately he is on spring break but unfortunately he wasn’t able to enjoy it that much.

On Tuesday, which is our weekly clinic checkup day with Dr. Kurtzberg, we had some additional testing done. We had a pulmonary function test and a heart echocardiogram. Both tests were normal. This is GREAT news, there doesn’t appear to be any change from pre to post transplant. We also took a myriad of blood tests. Waiting for the blood test results is “high anxiety” because many times the outward appearance (looking good and healthy) can be deceptive --so the blood testing gives ‘the facts’. These test are pretty detailed and check DNA abnormalities among other things. Our clinic day lasted from 9-5:30. It was a very long day.

Also on Tuesday, Isaiah changed his mind at the very last minute about getting a port (much to our surprise). In fact, the surgery to put the port in after the catheter removal had just been cancelled but Sue, his wonderful nurse quickly straightened that out. Isaiah was very excited to get the lines out. Dr. Rice (the surgeon) and Isaiah discussed the port placement and Dr. agreed to try to put it by his right collarbone. Everything went well yesterday with the surgery and Isaiah is feeling well today. By the way, it was Dr. Rice who finally was able to help us with our “bleeding catheter” back in January so Isaiah already felt comfortable with him and was glad to have him do the surgery!

Isaiah’s skin rash --GVHD (reminder: graft versus host disease occurs when transplanted cells do not recognize the patient as "self" and they proceed to attack their new host, especially the skin, liver, stomach, and intestines) is much better. We are applying topical steroids and that seems to be taking care of it.

On Wednesday, the boys finally got some fresh air! We rounded up Carson (who is recovering from transplant), his mom, our neighbor Pat and the three of us Bingham’s and played some wiffle ball at the apartment complex tennis court. Pat’s baby, Jordan came to watch with his mom but he fell asleep. (We were so entertaining!) We had loads of fun and all got some (much needed) exercise. Isaiah said he has been dreaming of playing a ‘real game’. Two innings was good enough and he was very happy.

I would like to ask you prayer warriors to please still keep some of our friends in your prayers along with Isaiah. We are all recovering from Bone Marrow Transplants at different levels. Their names are: Alex, Travis, Reese, Jordan, Mckenzie, Sean, Adam, Tommy, Jill, Jillian, Cameron, Douglas, Tucker and Jacob .

Thank you for checking up on us. Please don’t forget to sign our guest book! A big thank you to those of you who have signed the guestbook. Isaiah really gets a big smile when he reads them --it truly means a lot. He checks it out all on his own. I’m sorry I can’t respond to you individually to say thank you but please know that Sal and I appreciate it very much too!
THANK YOU to all who have been praying for us.
Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Friday, February 28, 2003 11:34 PM EST
Day +94

Let’s start with the medical news first! On Tuesday we had our weekly appointment with Dr. Kurtzberg. Isaiah’s lab results were on target. Liver levels were a bit on the high side but not totally unexpected because of switching from IV Voriconizole to oral (to prevent viral infections). His platelets actually went up on their own and this means that his new bone marrow is actually producing them! Isaiah hasn’t had any blood transfusions in over three weeks!

We are still weaning the steroids and have stopped the Neupogen (which stimulates white blood cell growth). Isaiah’s daily medicines are all oral, so NO more IV’s. Yahoo!!!! We again talked about getting his catheters out next week. Isaiah explained very carefully to his nurse practitioner, Sue that he just isn’t ready for a port yet and would like to have the surgery at home the “day after he gets back” and added that no other nurse could be as fast as his nurse Mary (back home). When Dr. Kurtzberg came in, he also told her the same thing. She suggested pulling his double lumen out right then and there (Isaiah agreed), but it was a bit too painful so we decided to get it removed next week during the time that the port would have been put in. We will leave one line in until it’s time to go home. It is obvious that no matter how many times we address the “port” issue --Isaiah cannot handle putting in a port (right now) emotionally. He apologizes profusely to me and says, “mama, I’m sorry, I know it’s a lot of extra work (daily flushes, covering during showers, dressing changes) but I just can’t do it”.

We’ve noticed that Isaiah has some skin rashes that just popped up in the last few days. Today nurse Sue took a look and she seems to think that it is the GVHD flaring up a bit. (GVHD graft versus host disease occurs when transplanted cells do not recognize the patient as "self" and they proceed to attack their new host, especially the skin, liver, stomach, and intestines. What happens is the GVHD can be mild or severe (even life-threatening). We need to keep an eye on it --apply topical steroid creams and hope that it doesn’t spread! Other than that Isaiah is doing well. He’s actually starting to run a bit which is really a HUGE step forward (at least in his mama’s eyes!) After spending almost an entire month and half on the couch, this is all great progress.

It’s starting to feel like spring here in Durham. Rain, rain, rain and oh yeah, frozen rain.
We’ve had tornado watches, tornado warnings, freezing rain, school closings (again), no power, and more rain this week. (Did I already mention that?) It has been cold too. We’re really ready for some better weather. I know y’all in the north might like to trade some of your weather --perhaps not this week though!

Last night Isaiah’s friend, Alex came over with his sister, Emily and mom, Jill. We had dinner together. The kids and adults had a great time and I figured we all needed this diversion for our emotional state. Fortunately Jill’s power and ours returned in time to be able to spend the night in our own apartments rather than having to hunt around for a hotel room.

I would like to ask you prayer warriors to please still keep some of the kids in your prayers along with Isaiah. There are so many having a rough time and others recovering from this “ordeal”. Their names are: Alex, Travis, Reese, Jordan, Mckenzie, Sean, Adam, Tommy, Jill, Jillian, Cameron, Douglas, Tucker and Jacob (who just relapsed after his transplant in December). If any one would like their web site, please let me know --they all have one.

Thank you for checking up on us. Please don’t forget to sign our guest book. Isaiah has been reading the messages and checks them daily --so please let us know you stopped by!!
THANK YOU to all who have been praying for us.
Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Thursday, February 20, 2003 11:49 PM EST
Day +86 post transplant.

It’s starting to feel like spring here in Durham. We saw some beautiful pink blooms in these little trees by the hospital and the Eastern Bluebirds are gathering in the meadow outside our bedroom window!

Medical news first! On Tuesday we had our weekly appointment with Dr. Kurtzberg. Isaiah’s labs were good and his platelets are hovering at 23k. This means that the bone marrow is trying to get “going” at making cells and having some success. Hemoglobin has actually climbed to 10 --which is another good sign. Normal range is approx. 12 and above. We are slowly weaning the steroids, and have now switched from IV Voricanizole (to prevent viral infections) to oral. That’s an additional 4 pills a day for a total of about 18 pills. Isaiah takes them all without complaint. This one saves him from being hooked up to an IV 2x a day for a total of about 4 hours. We are down to three IV’s a day which takes less than 30 minutes. We also had some discussion with Dr. K. about taking Isaiah’s catheters out soon and replacing them with a port. It means another surgery in his chest area (his 5th) and that he would start getting pokes again to give him meds, draw blood, IV’s etc. He isn’t too sure he wants to do that. Ports are easier to take care of and there is less chance of infection. The drawback is that it requires a needle poke to access. Isaiah has had so many pokes in the past couple years that I know it is going to be difficult to go back to using a “needle system”.

On Monday, Isaiah got sick (vomited) and felt really lousy. We were hoping it wasn’t the flu. Many of you know how awful it can be for a “healthy” person let alone a transplant patient with not much to fight it with. Fortunately the next morning he felt pretty good and just about back to normal. Tonight he’s feeling bad again. Hope it’s not a long night.

The Cyclosporine hair is growing everywhere and his eyebrows are getting so thick. Isaiah commented that when he looks in the mirror he doesn’t’ recognize himself. If it does bother him he doesn’t show it. He knows that this new look is “temporary”. Speaking of temporary…Isaiah is off the pizza every day kick. In fact he turned it down the other night and hasn’t asked for any since. Right now “Pringles” is the snack food (can you call it food?) of choice. Potato chips are not a common part of Isaiah’s menu!

Mishael enjoyed having 2 days off from school this week --more snow days. I think they have some days to tack on to the end of the year! Mishael went out to play in the “one inch” snow numerous times. He loves the cold weather and snow. The rest of us stayed indoors and kept warm. Of course --most places closed down for 3 days.

I would like to ask you prayer warriors to please keep some of the kids in your prayers along with Isaiah. There are so many having a rough time and others recovering from this “ordeal”. Their names are: Alex, Travis, Reese, Jordan, Mckenzie, Sean, Adam, Tommy, Jill, Jillian, Cameron, Douglas, Tucker and Jacob (who just relapsed after his transplant in December). If any one would like their web site, please let me know --they all have one.

Thank you for checking up on us. Please don’t forget to sign our guest book. Isaiah has been reading the messages and checks them daily --so please let us know you stopped by!!
THANK YOU to all who have been praying for us.
Pat, Sal, Mishael and Isaiah

“Cast your burden on the Lord and he will sustain you.” Psalm 5: 5:22

Friday, February 14, 2003 11:40 PM EST
Day +81 post transplant!

We hope y’all had a nice Valentines Day. I had hoped to update during the week but somehow time slipped through my fingers and here it is the end of the week already.

We’ll update the medical news first. Last Tuesday was Isaiah’s day to have his checkup with Dr. K. We were sure that he would need a platelet transfusion because he had been hovering around the 20k parameter for three days. Much to our delight the platelets had actually gone up a tad and no transfusion was needed. We hope this means that he is actually starting to make his own red blood cells and platelets. Isaiah had his weekly IVIG IV and we met with Dr. and Sue our nurse practitioner. The labs were all fine --right on target. Everyone was pleased with that. We switched from IV Cyclosporin to PO. The goal here is to get off the IV’s and switch to all oral meds (and then we can think about actually going home)! Even a minor setback at this point could set things back 2-4 weeks. The Cyclosporin was his longest running IV @ 2x a day, so this gives us a little more freedom. He said it was, “NO PROBLEM”, taking the 6 additional pills every day instead of the two IV’s.

Mishael had his own “medical day” yesterday by having a tooth pulled and in the evening hitting his head on the porcelain built-in soap holder on the shower wall. It sure caused a HUGE bump and it hurt so much. I hope the lesson was learned that when you hold your breath underwater --you have to be very careful where you come up (quickly) to gasp for air! I was suddenly reminded that when you take care of a CK (chemo kid) you can run into trouble not remembering what to do in more normal situations when kids get hurt. It’s like you forget the basics. Well at least I remembered to get out the ice pack, we have more ice packs than anyone could even imagine! (We get them everyday with medicine deliveries). My friend Jill reminded me of some other things to “watch for” with a good knock to the head. Of course I should mention that Isaiah was in the other tub dozing while standing (with the shower on). The phone was ringing and Sal had stepped out to run an errand. It was chaotic.

The other news is that Isaiah has finally gotten tired of pizza so we are not having it almost daily. But another problem has been created as now Isaiah is having trouble deciding what to eat. It takes a good while to figure it out even after I have gone over the list numerous times. One food he can’t wait to eat is scalloped potatoes. He told me he had a dream the other night about them (no doubt uncle Ed’s) and said that in his dream he could “taste them”. I hope that satisfied his craving. There are still foods that he is not allowed to eat. In time, that should change. By the time we go home, Isaiah will probably have ordered some of uncle Ed’s potatoes. He did ask me recently if uncle Ed could send some from home!

Another sign of things returning to some sort of normal is that Isaiah has started playing the piano again. Just short practices --but it’s a step. He also built a fort with Mishael tonight. Sounds like a pretty normal activity for a 7 year old --but usually he is lying on the couch because he is too tired. It really was a pleasure to watch.

I did want to mention that Isaiah has not been feeling too well today. He’s had an upset stomach. We know the flu is going around and I sure hope it misses us completely! It could be something else even more serious. If he is not feeling well tomorrow morning we will head right over to the clinic to get checked out.

We would like to thank you all at Galaxy Bowling for sending the boys’ trophies, patches, and the other goodies this past week. The boys just loved being reminded of the fun bowling days. They can’t wait to get back to bowling --as I’m sure you know.

There are so many people we would like to thank for so many things. I hesitate to do it in the journal updates because I’m afraid I will forget someone and that wouldn’t be good. I am trying to keep in touch --so please be patient with me. I’m the official card writer and I am sorry to say I am “way behind”…

Thank you for checking up on us. Please don’t forget to sign our guest book. Isaiah has been reading the messages and checks them every day --so please let us know you stopped by!! I will try (once again) to update during the week!

THANK YOU to all who have been praying for us.
Pat, Sal, Mishael and Isaiah

"Cast your burden on the Lord and he will sustain you." Psalm 55:22

Friday, February 7, 2003 19:47 PM EST
Day +74 post transplant!

Things are moving along. Days are going by quickly and quietly. Our routine is changing and we are enjoying it. It’s hard to believe that we are having so many days off after spending almost every day in the clinic or the hospital since July 22, 2002. For the first time in a long time we are allowing ourselves to think about the next months as opposed to the next day.

On Sunday and Monday we had some really nice weather here. Isaiah ventured outside and even rode a new big wheel we got for him. As tired as he’s been that’s really a big step for him to ride the bike (with a little help) up the hill. He needs to exercise to keep strengthening his legs and to get back to his pre transplant activity level --at his own pace of course. Mishael has a battery powered remote control “Hummer” that he enjoys as it is incredibly fast and fun! The parking area at our apartment is a perfect place for remote control cars. They challenged our neighbor Pat to some races. Things got pretty wild and fast and there was plenty of laughter!

Our social nights are still on track. Isaiah’s special friend, Carrie came by on Saturday night. Carrie and the boys had a great time at video games till pretty late that night. Sunday was Groundhog’s day and we started a pizza tradition, I think Isaiah was looking for any reason to get some pizza. Monday is “pizza night” here in Durham, so we had a little pizza party that night. We had lots of fun on Wednesday night with our neighbors, Pat and Carrie from Decatur, Illinois. One of the main topics of conversation was of course --pizza and the fact that the next day was “pizza day”. Isaiah could hardly wait! Alex came over the next morning for a little playtime. We surprised the boys with a watermelon. Yes --one of the fruits they have been wanting for months and actually allowed to eat. The boys enjoyed it even though it didn’t have a lot of flavor. Oh life’s simple pleasures shout with joy in my heart…

Speaking of pleasures…some of you know that Isaiah is a “thrill seeker” who has loved roller coasters ever since his first Zack Zoomer at Michigan Adventure Park during that hot summer of 1999 when he was three years old. He wanted to go on it again and again. His memories of the rides he went on during our Give Kids the World visit in 2001 and last year’s theme park adventures really pulled him through some very difficult situations. I just wanted to share a little story Isaiah wrote for school last week with his teacher. It is his first theme paper about his special day that we were able to seize (after relapse) between chemo treatments in August 2002.

The day I went to Cedar Point
By Isaiah Bingham, January 2003
When I was 6 years old, I went to Cedar Point Amusement Park with my family. It was a lot of fun! It took a long time to open. I was the first person to go in. The first ride I rode was Millennium Force roller coaster. Millennium Force is 310 feet tall and goes 93 MPH. It has lots of hills and sharp turns.

After 15 minutes, I finally got on. When I got on, I put my hands up and kept them up the whole time. This made the ride more interesting. I felt like I was flying! I was disappointed when the ride stopped. Millennium Force was my favorite ride of the day.

After a long day, it was finally time to go home. I was exhausted.

(Sandy --are you out there? Remember that day we met you? It was such a special day for us. Thank you for making us feel so special! We are looking forward to the day when we get Doctor’s O.K. to come back to Cedar Point!)

Thank you for checking up on us. Please don’t forget to sign our guest book. Isaiah wonders who is looking in --so please let us know you stopped by!! I will try to update during the week and make the updates shorter!

THANK YOU to all who have been praying for us. It really helps and is encouraging to know of your kindness and thoughtfulness! We are surely blessed each day through God’s Grace. God bless you.

Pat, Sal, Mishael and Isaiah

Friday, January 31, 2003 at 11:52 PM (EST)
Today is day +66 post transplant!

We had a nice break from transfusions last week. We made it 6 days without a platelet transfusion --we were hovering around the 30k mark!!!! (That’s our new parameter for getting platelets). On Monday, January 27th we went in and somehow managed to spend more than 8 hours in the clinic. Isaiah had a red blood cell transfusion (that takes about 3 hours) and a platelet transfusion (about 1 hour). Add on to that the ordering of both the platelets and red blood cells and there you have another few hours. It sure made for a long day. Since Isaiah is still a little tired from his Somnolence (side effect of the cranial radiation), he didn’t seem to mind sleeping through most of the day at the hospital. Why of course --the beds are comfy, the room has one wall which is a window that insulates sound very well and it has great temperature control so why not take advantage of it!

The next day was actually our “long clinic day”. Isaiah had his IVIG IV treatment and a Pentamadine breathing treatment. The breathing treatment is a prophylactic to help prevent pneumonia (something that can be very serious in leukemia patients and you can imagine how serious for transplant patients). Dr Kurtzberg was out of town so another Dr. did the exam and consultation. He said that since he hasn’t had the opportunity to meet Isaiah yet --it must be because he is doing well!! However even the Doctor had heard about the famous “bleeding catheter” from last month. All in all the “numbers” look good and there are no major concerns at this time. Our next milestone is +100 days post transplant. We will then have another series of tests to determine the effects of the transplant on various organs and other changes since pre-transplant.

During these last months, Isaiah has really changed his “look” many times. During his transplant he lost his eyelashes and eyebrows (his hair has been gone since last August). After he was discharged he gained about 10 pounds in almost as many days, and then proceeded to lose it almost as fast. Now he is stabilized at a comfortable weight and we are pleased because his eating is not an issue at the moment and that is really great. Of course eating pizza every day would be under normal circumstances not the norm for him. Neither is eating mashed potatoes and veggie dogs for breakfast…but now you give them whatever they can eat (and want to eat) as the dietary choices are still quite limited and so are his tastes. Anyhow, getting back to the “change in looks”. I wanted to mention that he is growing some thick, black facial hair EVERYWHERE, and has some very thick dark “unibrows”. This is a temporary side effect to one of the engraftment drugs called cyclosporine, and may remain until the drug is stopped (usually at about one year post transplant). Isaiah said today he thinks he has some hair on his chest.

Mishael is starting to get used to the “snow days” here. We have never seen him check the weather so frequently just in case they cancel school. He’s the only one in the family who misses the cold weather and the snow! Yesterday he had a special outing with Sal. They went to the Duke vs. Butler basketball game. The game was televised on ESPN2. You basketball fans no doubt know how popular the sport is here. The extra attention was good for Mishael and he took lots of pictures of the Duke mascot and the scoreboard. The event wasn’t easy to explain to Isaiah but that’s another story…

Our neighbors Carrie and Pat came over to play an old-fashioned game of Clue during the week. That was a lot of fun!! They left baby Jordan at home with his grandparents for special cuddle time with them. Isaiah was able to keep his head up and stay awake until the very last clue. We’re already looking forward to next week.

Please remember the kids on the transplant floor. There are 16 rooms on the Pediatric Transplant unit and they are almost always full. Every family has a painful story to tell. We thank God for every day and we are so very grateful. Thank you for checking up on us. Please don’t forget to sign our guest book and let us know you stopped by!!

THANK YOU to all who have been praying for us. It really helps and is encouraging to know of your kindness and thoughtfulness! We are surely blessed each day through God’s Grace. God bless you.

Pat, Sal, Mishael and Isaiah

Friday, January 24, 2003 at 10:50 PM (EST)
Today is day +59 post transplant!

We’ve been able to take a 3-day clinic break!! Yay!! We are borderline on the platelets (30K) and hemoglobin (8.1) so we’re sure we will need to go in for blood and platelet transfusions tomorrow.

On Tuesday we had our long clinic day and stayed for 7 hours. We had IVIG, platelets and a dressing change. Isaiah slept most of the day. We met with Dr. Kurtzberg, and she is pleased with Isaiah’s progress and said his “labs” look good. She lowered the platelet parameter from 50k to 30K. (This means that we will transfuse when they drop to 30k or less). This should give us an extra day away from the clinic here and there. (Like today.)

It has been very cold here (like most of the Midwest and East coast). Yesterday (Thursday) we actually got about 2 inches of snow. It looked so pretty but there were unfortunately so many accidents in the morning. School was cancelled so Mishael had a chance to play in the snow and the cold. He cleaned off the car and actually helped the neighbors clean theirs too. I was happy just to look outside and admire the snow from INSIDE! Mishael really misses the snow. Isaiah doesn’t’ seem to miss it too much. He’s so tired that it is a real effort to even go outside. He does very well when we need to go to the clinic though and sometimes even manages to climb the 4 flights of stairs instead of the elevator.

It has been a busy week on the social calendar. Carrie - Isaiah’s best buddy and Carrie our neighbor (and mom of a precious little baby Jordan who was also recently had a cord blood transplant and is doing well!) came over on separate evenings to play some games. The boys love this because we are so restricted in what we can do and where we can go and they just love to play games (as some of you know)! Isaiah and his friend Alex also met one morning for a little play date. Isaiah had his first pizza in months at Alex’s house and the boys seemed to enjoy every bite. He is only now allowed to eat pizza so it was a very big deal for him. He has had pizza for 4 days now. Well, at least it’s a change from the 4 days of veggie dogs! Oh, I forgot he had one for dinner tonight!

Isaiah is still napping quite a bit due to the Somnolence Syndrome (effect of cranial radiation). His legs have started to atrophy because of the high dose steroids he is on --and probably because he is in a “vertical” position often. We hope to start exercising a bit more as soon as this sleepiness subsides (of course that included me as well). He is eating and drinking well (this is so important).

It is only now that I look back and realize what has really happened in the past three months. Our already upside down life took yet another turn by us coming down here to North Carolina for Isaiah’s transplant. I still can’t believe that Isaiah has had a transplant. No, it isn’t denial -just unbelief at how much he has been through thus far. The transplant world is a tough one to be in. There are children that had attached themselves to our hearts who didn’t do very well and others who are struggling. Please remember them in your prayers --they are in the 5200 Pediatric Unit at Duke University Hospital.

We thank God for every day and we are so very grateful. Thank you for checking up on us. Please don’t forget to sign our guest book and let us know you stopped by.
Should we be updating more often?

THANK YOU to all who have been praying for us. It really helps and is encouraging to know of your kindness and thoughtfulness! We are surely blessed each day through God’s Grace. God bless you.

Pat, Sal, Mishael and Isaiah

Friday, January 17, 2003 at 11:13 PM (EST)
Today is day +52 post transplant!

It has been a quiet week. We were able to skip going to the clinic on Sunday --but sure made up for it with an 8-hour stay on Monday! Isaiah requires platelet transfusions every other day because of his Polyoma virus (a urinary track infection). We hope that the parameters for when platelets are needed will be lowered next week so Isaiah will not need transfusions as frequently.

The new symptom that Isaiah is experiencing is extreme tiredness. It is a side effect of the cranial radiation and is called Somnolence Syndrome. Usually it appears about 6-8 weeks after radiation. Side effects may include the tiredness, loss of appetite and a low-grade temperature --at least these are the ones he is exhibiting. He asked me if this was normal and I assured him it was. That satisfied him.

Isaiah is enjoying his daily school sessions at the hospital. He is diligently doing his homework and asking for more. I think he’s looking forward to the day when he can return to real school for the entire day. Mishael is enjoying his school too. He doesn’t share much except details about recess. Today he had a snow day. There was a dusting on the roofs and cars. Mishael was pretty thrilled to be able to make a big snowball but was disappointed there wasn’t more snow

We have finally been able to get Isaiah off of his liquid nourishment (TPN). Not only does it save us lots of set up time --the best part is that he doesn’t need to be hooked up at night (for 12 hours). Another benefit is that we don’t have to wake up every other hour all night long to go to the bathroom. We were all able to get the best night’s sleep!!!

We’ve had 2 visitors this week! Isaiah’s friend Alex came to play some games with him. After finally deciding what games to play they seemed to have a nice time. Mishael had an “outing” with a special young lady --Caroline during this time. This evening, Isaiah’s “best buddy” Carrie came over. We all had a very nice visit with Carrie --but unfortunately Isaiah slept all the way through it.

Thank you for checking up on us. THANK YOU to all who have been praying for us. It really helps and is encouraging to know of your kindness and thoughtfulness! We are surely blessed each day through God’s Grace. God bless you.

Pat, Sal, Mishael and Isaiah

Friday, January 10, 2003 at 11:07 PM (EST)
Today is day +45 post transplant!

Well, we have the unofficial record for the “longest bleeding catheter” here at Duke. After about ten days of this messy nuisance we were all at our wits end. The Pediatric Surgeon was called to come in and take a look. He suggested holding pressure (with one finger) on a specific spot for an hour. (We had been holding pressure on all kinds of spots during the week before). OK --I was willing to try anything but wasn’t really sure it would work. It did!!! The site didn’t bleed at all during the night or the next day. We could hardly believe it! What a tremendous relief not to have blood oozing all the time down his stomach (once the gauze was saturated) and through his t-shirt!!

Isaiah took the whole episode in stride and was ready to have the catheter pulled and replaced if that was what was needed. Isaiah also has a urinary track infection --a virus called Polyoma. It causes blood in the urine and clots are often expelled. It can be very painful and needs to take its course (sometimes lasting for a few months!). Coupled with the other bleeding, he has needed two red blood cell transfusions in the last week because his hemoglobin has fallen and we are waiting for his new bone marrow to make its own red blood cells.

Isaiah’s Nana and my friend Linda came for a short visit last week. It was so good to see them. Unfortunately, Isaiah and I spent most of our time at the clinic but managed only to visit at night. Mishael got to visit the most and spent a day with the ladies roaming the nice new mall and having lunch with them. He needs a little extra attention as he has been spending most of the time at the apartment over the holidays because Isaiah has had to spend so much time at the clinic.

Isaiah is eating and enjoying it. In fact he makes jokes about his eating. Grilled cheese, tofu chili and veggie hotdogs are the favorites of the moment. We are finally talking him off the liquid nutrition tonight. That is good news as he will not be hooked up for 12 hours through the night and we hope we won’t be getting up every 1-2 hours to go to the bathroom. He will continue to be “hooked up” for about 2 ½ hours each morning and evening with some other meds for the next couple months.

Being home has been very tiring and not routine. We are trying to get into a routine that works. As we are going on to day +46 post transplant we are not required to go into the clinic every day anymore but on “as needed basis.” We still have to drop off blood samples every morning and wait for the results before we know if we need to head to the clinic for transfusions or medicines. Tuesday is our day to see Dr. Kurtzberg and receive some IV medicines --so we can never skip Tuesdays. We should mention that clinic “visits” can last from 2 ½ hours to our record of 9 hours --and YES, that’s every day so far since we’ve been discharged! You can see where all the time goes.

Sometimes we wonder where we are getting our strength. We believe we couldn’t do it without the blessings of our heavenly Father, the help and prayers from our friends and family (and even strangers). We appreciate all of you who have touched our lives in so many ways. Thank you.

Thank you for checking up on us. THANK YOU to all who have been praying for us. It really helps and is encouraging to know of your kindness and thoughtfulness! We are surely blessed each day through God’s Grace. God bless you.

Pat, Sal, Mishael and Isaiah

Thursday, January 02, 2003 at 11:43 PM (EST)
Today is day +37 post transplant

We wish you a Blessed New Year!

It’s hard to believe that it has been almost a week since we were discharged. We have finally gotten the “hang” of the IV medications and the IV nutrition. We always pull out our schedule of meds because we just don’t want to chance any mistakes. Sal has things that he seems more comfortable with and I have mine. A restful night’s sleep is not on the agenda yet. We are more tired than when Isaiah was in-patient.

Isaiah is feeling pretty well. He has started to eat a few things. The steroids have caught up with him and he’s gained about 6 lbs in about as many days. It really bothers him because it seems to affect his balance and he is not comfortable with the gain --it’s just too fast. But that’s just another of the side effects of the medications. He is very happy to be home but he has spent so much time in the clinic and when he is home he is hooked up to the IV’s that it has been hard to even get to enjoy some of his Christmas presents.

The hardest thing has been, (other than his serious allergic reaction to a platelet transfusion), his new catheter that has not stopped bleeding since discharge. It has just been oozing and we haven’t been able to stop it even with special clotting sprays and daily dressing changes. At night we do numerous checks and even have had to wrap a towel around him and apply pressure to help control it. To help him get through this we have had to have almost daily platelet transfusions and finally today a red blood cell transfusion. Not only is it a nuisance (especially for him) it is troubling. If it is not better by tomorrow we hope to have the surgeon who placed the catheter take a look at it and see if there is anything that he could do.

On a bright note --my mom and our good friend Linda arrived yesterday for a short stay. This was so nice for all of us but unfortunately Isaiah and I haven’t had much chance to visit yet as most of today Isaiah and I spent at the clinic. But Mishael was able to enjoy their visit today and a little much needed “extra attention”. We hope that our clinic visits will be shorter in the near future and that the catheter will stop bleeding!

Once again, thank you for checking up on us. THANK YOU to all who have been praying for us. It really helps to know you are thinking of us and praying for us! We are surely blessed each day through God’s Grace. God bless you.

Pat, Sal, Mishael and Isaiah

Friday, December 27, 2002 at 11:56 PM (EST)
Today is day +31 after transplant. WE ARE HOME!!!!

Praise God for hearing our prayers. This is the best Christmas present! We were discharged on day +30, Thursday, December 26, 2002.

It has been a hectic week at the hospital. Isaiah has started to feel better. His white blood cell count is rising nicely. He is getting platelet transfusions about every other day. In addition to the usual activity -- the fact that it’s Christmas week added to the commotion. We were treated to a wonderful Christmas Eve dinner by Macedonia Baptist Church. Then some folks delivered the biggest Gift Bags that we had ever seen filled with all kinds of goodies. That was so nice. The next day the Duke Blue Devil mascot visited each patient and gave the boys a huge remote controlled PT cruiser. It’s almost big enough to ride! Isaiah decided to test his in the halls that evening during the nurses shift change --yes there would be double the nurses in the halls to harass and run down. We appreciate so much the generosity and kindness of these special people who have shared so much with us.

On Christmas Eve Isaiah got his first out-of-unit pass to walk around the hospital. Isaiah went down to the clinic lobby and played the grand piano. What a Christmas present that was to hear him play Minuet 3 completely. It’s been such a long time since we heard him play. Mishael also sat down to play his favorite Pachelbel Canon. It certainly was music to our ears.

On Christmas Day we were given a pass to go home for 4 hours. We so enjoyed just being home together. We had a little family devotional and reminded ourselves of the true reason for Christmas. Then we opened some gifts. The boys had a grand time. We enjoyed just being home together. Mishael was so attentive to Isaiah and hardly left his side. Isaiah was quiet and seemed pretty overwhelmed with just getting some “fresh air”. He went back to the hospital anticipating his release the next day.

We arrived home very late on the 26th. After a nice confetti sendoff by everyone as we walked down the hallway, we were so happy to arrive home. Early this morning the Home Health care nurse came in and helped set up the IV’s and give us some other pointers. Isaiah has come home needing IV Nutrition (as he has not eaten anything to speak of in weeks). He will also need a number of IV meds both in the a.m. and p.m. We have a total of 5 pumps for the IV’s. I hope Sal and I get it straight as there is much to learn and we’re talking some serious drugs to administer.

We are required to go to the clinic every day until at least day 45 and then the schedule changes somewhat. Today Sal took Isaiah in, he needed 2 transfusions (red blood cells and platelets). Since there is a wait on platelets --Sal had to run home (by himself) and get all Isaiah’s meds so that we can start the pm IV’s A.S.A.P. We now have everything he should need at home. Sal was just heading out the door to go back to the hospital when Dr. called to tell us that Isaiah had a very severe reaction to one of the blood products and it required emergency type treatment. Wouldn’t you know it --the only time we were not there he had a reaction! How awful.

Isaiah is home now resting comfortably, and all “hooked up”. The next med will finish soon (12:30 am) and we will have to flush. We sure miss the nurses on the BMT Unit! Yes we really do miss the nurses -they were the best, and Isaiah never hesitated to call them when he needed them. He felt very comfortable talking to all his nurses. We also miss the kids on the units and their families. I wish we could all leave the unit in the same order we came in.

Once again, thank you for checking up on us, for the nice cards, notes, and guest book entries you have sent us. THANK YOU to all who have been praying for us. It really helps to know you are thinking of us and praying for us! We are surely blessed each day through God’s Grace. God bless you.

May this Holiday season be a joyous one for all and may the New Year be filled with an abundance of blessings.

Pat, Sal, Mishael and Isaiah.

Sunday, December 22, 2002 at 11:08 AM (EST)
Thank you for taking the time to check in on us at this busy time of the year.

Today is day +26 after transplant. The great news is that Isaiah has OFFICIALLY ENGRAFTED! It has been quite difficult to get to this point and there is still much more ahead.

Isaiah is starting to feel better. During this last week he was experiencing very severe back pain and leg pain. Side effects include body tremors and high blood pressure. In addition, he had the chills and shakes so badly that he could hardly sleep. Tylenol and morphine were the combination that was needed to take the edge off. He really likes to have his back and legs rubbed when in pain. It seems to relax his muscles a bit and take some of the tenseness away (that I’m sure contributes to the pain). Sometimes he needed the massages even in the middle of the night! It has been so hard for him to sleep for any length of time but it is getting better. Different creams and lotions are needed to hydrate his skin and keep it from peeling and him from itching. Some of these are side effects of GVHD (Graft Versus Host Disease), some are side effects of the medications, and some are side effects of the medications to treat the side effects. It is a very vicious circle.

On Thursday morning of last week Isaiah had his surgery to replace the double lumen catheter that was pulled out due to infection. As he was wheeled to the operating room he commented (as he stared outside through the huge picture windows) about how nice it was to get off the unit. Surgery went well and his recovery included lots of much needed sleep (conveniently -- in his room).

In the last few days the pains have subsided quite a bit. He is able to get a little more rest and exercise but is very tired. His body is working overtime to make those white blood cells!! These little cells rushed to his infected site around his catheter when he had his infection and it has taken a bit of time for his counts to recover. But now his WBC (white blood cells) have really started churning and as you saw above as of Saturday, Day +25 Isaiah has OFFICIALLY ENGRAFTED. This means that his White Blood Cell and Neutrophil/Band count are at a specific level for three consecutive days. This is the best news yet!!!!!!!! We will soon be preparing to go home to the apartment. If all continues to go well it C O U L D happen sometime next week. Wow, it is so hard to believe how far and how fast this has gone! Sal says that we may have a new favorite Christmas song, "I'll Be Home For Christmas".

We are enjoying seeing the various holiday decorations in the unit and the kids have been working on various seasonal crafts during supervised activities. Since school is out, Mishael was able to join the kids for a craft on Friday afternoon. Yesterday, Isaiah and a few "grow cells grow", cell mates worked on a lovely gingerbread house. Last Sunday was a big NASCAR day in the unit. A group from the Hendrick Marrow Program came around to visit the kids in each of their rooms. They brought lots of goodies for the patients and siblings. They spread their cheer and it was very contagious. Certainly, this was one of the highlights of the week! Also we would like to thank some of the former transplant patients (and families) who have come to bring treats and gift from near and far. It is wonderful to meet the kids and their families and see how well they are doing post transplant! What an inspiration!

Thank you for checking up on us, for the nice cards, notes, and guest book entries you have sent us. THANK YOU to all who have been praying for us. It really helps to know you are thinking of us and praying for us! You have been an encouragement and comfort. We are surely blessed each day through God’s Grace. God bless you.

May this Holiday season be a joyous one for all and may the New Year be filled with an abundance of blessings.

Pat, Sal, Mishael and Isaiah.

Sunday, December 15, 2002 at 11:29 PM (EST)
Today is day +19 after transplant.

Wow, I have just realized -it’s almost the end of the year! We have been focusing on the transplant, and we’re getting used to counting days post transplant and sometimes lose track of the dates! Each day moves slowly, one mouthcare at a time, but looking back we lose track of where the days have gone.

We have had a few particularly rough days since our last posting. We have had to change and substitute some drugs because of Isaiah’s rise in his Creatinine (kidney related) levels. This is being closely monitored with all patients. The drugs to battle the side effects of the transplant have their own side effects especially to the kidney, liver and lungs and need to be adjusted and often substituted. On Friday morning I fortunately was still awake (it was 2:30 a.m!) and the nurse recognized that Isaiah’s chills were not his usual temperature spiking shakes from the antibiotics. It got so severe that he was shrieking with pain and shaking uncontrollably -- I could feel the muscles spasm in his legs. He cried that ‘nothing could help this’. Fortunately within 10 minutes the other medicines started to work and eventually the pains subsided. (Seemed like an eternity to us).

On Friday afternoon Isaiah complained about some tenderness around his double lumen catheter. Sure enough when the Drs. were making the rounds in the afternoon, the Drs. saw that it had reddened and the catheter entry site was swollen. (This is pretty difficult to see when you don’t have any white blood cells.) The Dr. said it needed to be pulled ASAP. That will hopefully explain why his White Blood Cell Count (WBC) plummeted that morning. (It still hasn’t rebounded 2 days later).

Anyhow, within a few hours a PICC line was inserted in his right arm (this temporarily takes place of the double lumen line). A PICC line is a minute line that is inserted into his vein and goes directly into his heart. I have to mention that the procedure itself --though quite simple when done correctly (it was) proved to be a major bad experience for Isaiah. He was awakened out of a deep sleep and before he knew, it was happening.

He had been awake when the EMLA (numbing cream) was applied to both arms about an hour before. Isaiah awoke very agitated and unfortunately was not given the time he needed to prepare himself mentally. He wasn’t given a chance, and really didn’t know what was going to happen. We were all very upset afterwards, but at least it was inserted and the line was good to use (as verified by a quick x-ray taken with in minutes).

The next challenge was the pulling of the catheter out of his left chest wall. This was the same side as his port and prior catheter. Even with pain medication, the tugging of the line hurt a lot. This procedure took about an hour. Dr. was most patient and let Isaiah call the shots. That really helped him prepare himself mentally for each tug. What was so difficult was that Isaiah expected it to take a few minutes like his prior catheter removal -- but this one was hard to budge and was much more painful). After the procedures were done we were just drained.

In typical Isaiah fashion, he started joking around afterwards and managed to drink some Gatorade and have a push-pop ice cream sherbet. This is the first thing he has had in two weeks!!! (He does drink water and has nourishment via IV). Isaiah slept all day on Saturday.

We have to think about having a new catheter placed again in a week or so. We are not looking forward to this. It would be his 4th surgery for different lines in his chest. So we are still anxiously waiting to see some increase in his white blood cells.

We pray that all the other “engraftment pains” are on their way down and that we don’t run into any more complications.

Thank you for checking up on us, for the nice cards, notes, and guest book entries you have sent us. THANK YOU to all who have been praying for us. It really helps to know you are thinking of us and praying for us! We are surely blessed each day through God’s Grace. May God bless you.

Pat, Sal, Mishael and Isaiah.

Wednesday, December 11, 2002 at 06:53 PM (EST)
Today is day +15 after transplant.

It’s hard to believe that it has been more than two weeks since the stem cell transplant. As some of you know, North Carolina was hit very hard by an ice storm last Wednesday. It was the largest power outage in North Carolina’s History. Some places still don’t have power. The soft White Pine trees cracked in half and blocked freeway lanes and roads. Telephone and power lines didn’t stand a chance. Our power was restored on Tuesday. It was a good time for us to be in the hospital which remained powered on during the state of emergency. Sal and Mishael camped out in another apartment complex that they rented for almost a week. The sister apartments to ours had some empty apartments and offered them to tenants in our complex who needed a place to stay. No bed, chairs, or tables, but it had heat, hot water, refrigeration and a stove. Even though it worked out well --it was very disruptive and really a burden on top of what normalcy we can find comfort in. With power back on and the Internet connection working, we can give you an update.

Mishael had a few days off from school and enjoyed the adventure of “camping out” with dad. He thought it was great. Well at least someone had fun! School is back in session so his mini-vacation is over and there is some homework to do. Mishael thought he would get a break from piano too --but Sal coaxed him (with permission) to play the grand piano at the clinic. The sound is incredible from the first floor as its waves waft up all the way to the 4th floor balcony. Pachelbel Canon sure sounds nice on that piano, and it is a family favorite used in our wedding march 13 years ago.

Isaiah has gone through the vomiting, and early mucositis (mouth and throat sores) phases. The morphine drip really helped with the pain that comes with that. Then the high temperatures came. Fortunately all cultures were negative and the fever finally broke after about three days. Hovering at about 105 proved pretty uncomfortable but we got through it.

After the fever are the rashes, the aches and the pains phase. These are all over his body. Isaiah’s face looks like it is sunburned, his eyes are bloodshot and swollen -(sorry no pictures allowed). Also the feet got really red which made it painful to walk. Unfortunately it makes exercising difficult too --and that is very important during this time. Now his hands are red and very itchy. At this point all of these side effects are expected. It is said to be like flu symptoms - pretty miserable for the patient and tough for the parents too. The pains come and goes and has sometimes been very sharp. The PCP pump that provides the morphine seems to take the edge off. He is taking different medications to relieve all these symptoms and we are trying to find the right balance, but they all mean one thing - engraftment is happening

Some additional signs of engraftment are the WBC’s (white blood cells) are starting to make an appearance! That’s what we have been waiting for. It’s slow and steady each day now. (.1, .2, .3, .4, .5). Now it’s wait and see (and be patient as they can go up and down).

Isaiah is tired, but filled with drive. He knows that this will pass and he will be home soon. He is eating a few nibbles, drinking a little water and doing his mouth care regime four times a day. He exercises and bathes daily. He is doing his schoolwork, participating in board games, crafts, art, activities and playing some video games (SEGA, Nintendo 64 and Playstation 2). His attitude is strong and filled with hope.

Thank you for checking up on us, for the nice cards, notes, and guest book entries you have sent us. THANK YOU to all who have been praying for us. It really helps to know you are thinking of us and praying for us! We are surely blessed each day through God’s Grace. May God bless you.

Pat, Sal, Mishael and Isaiah.

Friday, November 29, 2002 at 02:26 PM (EST)
Dear Friends,
Thank you for checking up on us! Please let us know that you stopped by.

We hope that you all had a wonderful Thanksgiving. There’s much to be thankful for!!!

Today is day +4 after transplant. Praise the Lord that Isaiah had a really great day. It has been a week since we’ve been hospitalized. Isaiah had the heavy-duty chemotherapy drugs and immune suppressant drugs for three days prior to transplant. The purpose was to kill all his remaining blood cells and marrow cells so that the umbilical cord blood cells would be able to grow and start reproducing in his bone marrow. Fortunately, you are not able to see what the drugs are doing but just thinking about it is pretty devastating. The transplant was from an A+ donor, Isaiah was A- so his blood type will change. They estimate that he will need over 100 blood transfusions in the weeks ahead while we wait for the new cells to reproduce.

The first day of the chemo drugs was the worst. Isaiah broke out in hives, had a very swollen face and in general felt very bad. The succeeding days were a bit better. At one point he got a rash on his back that was bright red. For an hour and a half it itched like crazy and even if I had three hands to scratch his back it would have been barely enough. He got his dose of Benedryl --which didn’t do too much to relieve the itching. He begged for more and it was increased to the limit. That finally did the trick and he was able to get some sleep.

Tuesday (11/26) at 11:45 we were all ready for the transplant. It sounds so complicated, but actually it is just an infusion of those precious stem cells (every last drop) that lasts less that ½ hour. These stem cells somehow know that they belong in the bone marrow, and make their way through the body to make their new home. After transplant Isaiah started getting some sharp pains in his stomach that actually made him cry quite a bit. He described it as if daggers were piercing him. We hear that this is a rather unusual reaction, but probably a side effect of the DMSO chemical used to keep the cells from forming ice crystals when they were frozen in liquid nitrogen. The other side effect is an unusual odor of creamed corn. Fortunately it eventually subsided and he took a good nap and woke up quite chipper.

The last few days we have been trying to keep Isaiah active. It’s very important that the kids get their exercise and are strongly encouraged to walk the halls at least three times a day. It is sort of cumbersome as they are hooked up to their IV poles. For the moment, Isaiah has lots of energy and tears down the halls with his IV’s swinging from side to side. He also uses his pole as a sort of scooter ---and yes it makes us a bit nervous! He almost ran the resident doctor down today!

So this brings us to Thanksgiving Day. We had some Christmas carolers in the hall (they sounded wonderful!) and a group that cooked a delicious feast for the families on the 5th floor (Pediatric). It really made the day special for many of us (16 families)and was much appreciated.

More importantly Isaiah had a good day and entertained his nurse Amy and myself giving us some very good laughs this morning. Then Sal and Mishael came and we all spent some time together. We expect a few more days where Isaiah will feel decent and then the mouth sores and sores in the GI tract are expected. This is usually very uncomfortable and painful. The next thing to look forward to is high temperatures and body pain as engraftment starts to happen. Pain meds are given to help out but I don’t think they take away all the pain and discomfort. One day at a time…

Thank you for checking up on us! Please let us know that you stopped by.

Again and always, THANK YOU to all who have been praying for us. May God bless you.
Pat, Sal, Mishael and Isaiah.

Thursday, November 21, 2002 at 11:58 PM (EST)
Dear Friends,
Thank you for checking up on us!

It is the eve before we are admitted to the hospital, day -5. The feelings that we have we’ve never felt before. This is uncharted territory for us and we don’t know what to expect other than we are in the Lord’s hands. As long as we arrive to our destination safely -all will be well.

Isaiah has had 2 weeks of radiation. This week he has had double sessions; once in the morning and once in the afternoon. He’s done very well with it. The anti-nausea pre-medication he’s been taking seems to be helping. As far as staying very still during the radiation sessions--he has done so well. I don’t know if I could stay so still! The staff in radiation is just superb and that has helped him relax and not be afraid of it. He still hops, skips and jumps on his way to radiation. I really didn’t think he would have so much energy at the end of the week. We are very grateful.

Isaiah has school every day in between labs and treatments and seems to enjoy it very much. He would much rather chat with the teachers than do work. He keeps on asking me when he’s going to have P.E.! Mishael is enjoying school and looking forward to having the day off on his birthday (which is the day after Thanksgiving). Since they will be having a special dinner at the hospital (on the floor) it will make his birthday celebration a little more special for us.

Our timeline remains the same --Isaiah’s transplant is scheduled for Tuesday, November 26. The heavy chemo drugs will be administered starting day -3 and then the body will be ready for the new stem cells because his have been depleted by the radiation and chemo. If all goes well, Tuesday, November 26 will be Isaiah’s day “0” and we will be VERY anxious for the next 30 - 40 days --praying that there will be engraftment as soon as possible and no infection.

It seems that Isaiah is mentally prepared to go in for the transplant. We have told him as much as we feel he needs to know. I think he wants to get it over with and get on with life. He asked me today if he could play hockey next summer….we’re glad he’s planning ahead!

Again and always, THANK YOU to all who have been praying for us and helping us. We appreciate your checking in on us --please let us know you stopped by signing our guest book. We continue to pray for God’s guidance in every step of this journey. May God bless you as well.

Monday, November 11, 2002 at 11:33 PM (EST)
Time seems to be going by quickly but individual days are long. Does this make sense?

We had another series of tests last week. On Wednesday, Isaiah had his new catheters put in. A single and a double, so he has three lumens. It was a very early morning for us and Isaiah (bless his little heart as he was joking in the car on the way to surgery). Sal and I sat amazed at his calmness and sense of humor. It is not like he didn’t know what he was in for! (He had just had a catheter surgery in September and that one was pulled a couple weeks ago.)

The surgery went very well. There are two points of entry into the chest wall and they are very sore. He handled the surgery like a champ. While under anesthesia he had an LP (spinal tap) and another bone marrow aspiration. He also had another triple dose of chemotherapy since he has been off treatment for a month. The additional tests confirmed that he is still in remission. Thank God that he still is. He was very sore the next day and in the evening he finally had a “meltdown”. He started crying and told me during our evening sharing (a ritual we have every night) that it’s all so hard for him and that he doesn’t think he can “do this anymore”. It broke my heart to see him like this. But I knew that he needed to get this out and share. I told him he was a great kid and so brave. He thanked ME for telling him that --like he didn’t know. Wow.

We met with Dr. Kurtzberg for the final review of all the tests and the transplant protocol. As you can imagine the consultation is a very difficult one. Dr. Kurtzberg has a very special way of explaining things that doesn’t instill complete fear --but a little fear and reality. Fortunately Isaiah is going into transplant very healthy --although there are some areas of concern that need to be monitored very closely. The total body radiation he is having next week could aggravate a situation and make it much worse so we pray that it does not. If one reads the side effects of radiation --especially the doses that most children get before transplant it would give you the chills. Also, once the total body radiation starts, there is no turning back…

We managed to have a nice break this weekend. On Saturday we went to church and in the afternoon attended a gospel concert with a group called Southern Sounds. It was very nice. Afterwards they had a little reception at church. Sal and I had a chance to get to know our church family a little better and the kids had a lot of fun running around with some of their new friends.

On Sunday we celebrated Mishael’s birthday by going out to dinner for the first time since we’ve been here. His birthday is after Thanksgiving but since Isaiah’s counts are going to start dropping we have to take any opportunity we can. It was nice to be able to be together. Everybody enjoyed the dinner and each other’s company! Of course the restaurant chosen to go to was the Olive Garden.

Monday quickly brought us back to reality. Isaiah had his first dose of cranial radiation. Just saying it sounds scary! He did very well staying still. After that we headed to have an MRI done and it was another 45 minutes of being perfectly still. He was a trooper again. I saw some tears towards the end and knew that he had reached the end of his ability to stay still. He said it got so hot he could hardly stand it. He pulled through again and was all smiles once he got out of the room.

And sorry for repeating this but the timeline remains the same --Isaiah’s transplant is scheduled for Tuesday, November 26. The closer that date comes the more critical the isolation becomes too. We will be admitted 4 days prior to that where the heavy chemo drugs will be administered (after the radiation is completed) and then the body will be ready for the new stem cells because it won’t have any of his original ones left. If all goes well, Tuesday, November 26 will be Isaiah’s day “0” and we will be VERY anxious for the next 30 - 40 days --praying that there will be engraftment as soon as possible and no infection. Of course this will be only one milestone in a series that will last for many years to come. Mishael’s birthday will be Friday, November 29.

Again and always, THANK YOU to all who have been praying for us and helping us. You are all very special people. We are grateful and very humbled. We continue to pray for God’s guidance in every step of this journey. May God bless you as well.
Pat, Sal and boys.

Tuesday, November 05, 2002 at 1:16 AM (EST)
It’s hard to believe that it has been 10 days since we arrived in North Carolina!

Getting ready to leave home was a very busy time --and pulling out of the driveway was a very sad moment. We left home quite a bit later than planned and drove all night long. We went through West Virginia during the middle of the night and the boys woke up in time to catch the moon and shadows of the mountains --which were very surreal. The boys thought it was quite an adventure and we had to agree. We arrived the next morning and started unpacking the UHAUL. We wanted to get settled as soon as possible because we knew that it would be a very busy week. (I guess that Sal and I can’t pull all-nighters like in college without paying for the lack of sleep!) We didn’t have much time to get much rest before the weekend was over.

Monday, bright and early we started with our initial consultation, followed by labs for Isaiah. Since he has no line or port we had to do a draw from both his arms. This was quite traumatic for him (and us) and it hurt. The sight of 20 tubes sitting on the table didn’t help any. We had to fill them all. That certainly made me queasy.

I should explain that Isaiah is going through a series of tests to determine his complete health prior to transplant. He has to be in good health (and of course remission) in order to proceed. There are a series of consultations as well along the way. This will take approximately 2 weeks followed by radiation treatment. We will have cranial, spinal and testicular radiation followed by twice a day sessions of total body irradiation (TBI). This isn’t going to be easy for any of us.

Isaiah has been very co-operative thus far with the testing. Everyone at Duke has been so nice and helpful. Our next BIG day will be Wednesday. Isaiah will have another catheter put in with three lines and while under anesthesia will have a spinal tap and bone marrow aspiration. We pray that the results will indicate that all is still clear. Also, he will feel discomfort afterwards and I hope that it’s not too painful for him physically or emotionally.

Mishael has started school and seems happy to be there. It is a small school with only 8 students. He said he missed his friends at home and wished he could, “fly them out here”. Isaiah has started his own school program at the hospital. It’s a 45 session with a teacher as often as possible. He really enjoyed his first session today and was anxious to do his homework! Hope this lasts!

We are all adjusting to our new home and learning our way around. The boys seem to like it but miss some things about home. We have started attending church nearby and that has been a very nice experience. The Five Oaks SDA Church has been very welcoming and we really appreciate their reaching out to make us feel so at home. We love the fact that the church and school are only 2 miles from us! It is really very pretty around here. There are lots of trees that are turning colors. The weather is much milder than at home and we certainly can take that!

As for our timeline, --Isaiah’s transplant is scheduled for Tuesday, November 26. The closer that date comes the more critical the isolation becomes too. We will be admitted 4 days prior to that where the heavy chemo drugs will be administered (after the radiation is completed) and then the body will be ready for the new stem cells because it won’t have any of his original ones left. If all goes well, Tuesday, November 26 will be Isaiah’s day “0” and we will be VERY anxious for the next 30-40 days --praying that there will be engraftment as soon as possible and no infection. Of course this will be only one milestone in a series that will last for many years to come. Mishael’s birthday will be Friday, November 29. I think Thanksgiving is supposed to be somewhere in between.

Again and always, THANK YOU to all who have been praying for us and helping us. We are grateful and very humbled. We continue to pray for God’s guidance in every step of this journey. May God bless you as well.

Pat, Sal and boys.

Saturday, October 26, 2002 at 08:00 AM (EDT)
One family's hopeful journey Leukemia treatment requires months away

MUNDY TOWNSHIP
THE FLINT JOURNAL FIRST EDITION
Saturday, October 26, 2002
By Elizabeth Shaw JOURNAL STAFF WRITER

QUICK FACTS
Helping Isaiah
The need: Isaiah Bingham, 7, of Mundy Township has leukemia and will soon undergo a cord blood transplant at Duke University Medical Center in Durham, N.C.

How you can help: The Gaines Area Lions Club is asking for donations to help the family with living expenses during Isaiah's hospital stay. Make checks payable to the Gaines Area Lions Club, P.O. Box 77, Gaines, MI 48436. Write Isaiah Bingham Fund' in the check's memo line.

Mundy Twp. - Isaiah, 7, and Mishael, 8, brought their Bible tapes and Legos.

Their mother, Pat, packed a few of her favorite kitchen tools. Their dad, Sal, included the family computer.

It's a 13-hour trip across 800 miles to Durham, N.C. But for the Bingham family, it's the longest - and hardest - journey of their lives.

And none of them knows for certain what awaits at its end.
"It's hard leaving family, friends, neighbors, even your own bed," Pat Bingham said as she finished loading the U-Haul trailer Thursday morning in front of their Mundy Township home.

"We've tried to prepare but not to scare. We've told them that whatever we have to go through, we'll try to have as much fun as we can along the way. And we'll be together, no matter what."

Isaiah was diagnosed two years ago with leukemia. Despite numerous rounds of chemotherapy, a rare cellular abnormality known as the Philadelphia chromosome makes his body keep producing leukemic cells.

After a long, healthy respite this spring, Isaiah relapsed in July.

A 15-month search for a bone marrow match still fruitless, and doctors have told the family that Isaiah's only remaining option for a long-term cure is a stem cell transplant from a cord blood donation. Transplanted stem cells from an umbilical cord can help a leukemia patient grow healthy cells.

For the next four to six months, he will undergo a grueling treatment and transplant process at the Duke University Medical Center in North Carolina.

"This is really the last thing they can try," Pat said. "I'm just so thankful a mother had the foresight to donate her child's (umbilical) cord that gives my child the best chance he has to survive."

Making the decision to uproot the family and go to a strange hospital hundreds of miles away was a difficult one. After all, every support network they have - relatives, friends, work, church, school - is right here. Too, the oncology and pediatric staff at Hurley Medical Center had become like family over the past two years.

"We've turned our world upside down all over again," Pat said, the exhaustion and stress evident even in her gentle, soft-spoken words. "But we had to do what we believe in our hearts will give our child the best chance for any kind of survival."

Sadly, it's a state of mind that's become all too familiar. Like many families dealing with childhood cancer, the Binghams ride an emotional roller coaster whose highs and lows are mercilessly dictated by the disease.

At the beginning of July, Isaiah was playing T-ball and Mishael was on the Pee Wee league. The two brothers were also hard at work in their garden: Isaiah had planted watermelon while Mishael insisted on carrots. They played street hockey in the driveway and visited amusement parks.

By the end of July, Isaiah was undergoing the most brutal treatment regime yet, enduring weekly spinal taps, fevers and infections, emergency hospital stays.

"The relapse protocol is so aggressive. He was hit very hard," Pat said. "But the worst part is knowing you're running out of options."

The stay at Duke will mean adjustments for everyone in the family.

Pat, a lecturer at University of Michigan-Flint, has been away from work since Isaiah was first diagnosed in October 2000. Sal, a database specialist for Electronic Data Systems in Flint, will continue working from North Carolina. Mishael will attend a third-grade class at a Seventh Day Adventist school in Durham.

The family's insurance should cover the transplant and other medical procedures. But living expenses are up to the family. The apartment rent alone will be $1,800 a month.
"It's frightening ... moving half your household when you don't know where you're going. I don't even know what to pack," she said. "Until it starts working, I won't know how it's going to work. You just have to keep on going and prepare for what's coming because the worst is yet to come."

But faith and friendship will sustain them, she said. Even 800 miles from home.

"Again and always, thank you to all who have been praying for us and helping us. We are grateful and very humbled," the Binghams posted last week in a parting note on the family's Web site.

"We continue to pray for God's guidance in every step of this journey. May God bless you.
"Pat, Sal and boys."

***
Elizabeth Shaw can be reached at (810) 766-6311 or eshaw@flintjournal.com.
© 2002 Flint Journal. Used with permission
Copyright 2002 Michigan Live. All Rights Reserved.

Wednesday, October 23, 2002 at 09:06 PM (EDT)
We’re finally out of the hospital!

Our little trip to the hospital last Tuesday turned into a longer stay then we could have imagined. We went in because of a temperature of 101. Since Isaiah had almost no white blood cells, we had to go in for antibiotics. By the next day, the temperature was normal but a routine culture was positive for bacteria in his red catheter line. Fortunately it was isolated to the red line and not the blue one or in the peripheral blood. What a blessing to have found it so quickly. However it wouldn’t be till Monday before we would be discharged.

We made a decision to pull the catheter as we didn’t need to save it because Isaiah is getting a triple line put in when we get to Duke. Unfortunately we had to wait for days to get the line pulled as his blood counts were so low and we needed them to be a little higher. Two platelet transfusions later (again bless those who donate blood and platelets) the line was pulled and we were discharged. YAY!! I certainly was not sorry to see the HUGE double lumen hemo-dialysis catheter gone! Isaiah asked me if he would be a “normal boy” when his line is pulled. (He knows he’s getting another one at Duke).

I have to mention that we will really MISS the nurses, staff and doctors at the Oncology Clinic and in PEDS at Hurley Medical Center. The medical staff and the facility is really just first class!!!!!

Speaking of facilities, we are heading down to Duke. Our hospital stay has taken an enormous chunk of time away from packing and getting things together. Did I mention that it has been quite stressful. We start with preliminary testing the week of October 28. This will be followed by radiation (about 9 days) and then transplant about 4 days after that. That’s about as far as my thoughts go. To be continued….

Again and always, THANK YOU to all who have been praying for us and helping us. We are grateful and very humbled. We continue to pray for God’s guidance in every step of this journey. May God bless you.
Pat, Sal and boys.

Monday, October 15, 2002 at 12:00 AM (EDT)
Our last stay at the hospital went quite well. Isaiah felt relatively well during his chemo but afterwards there were some side effects and he has lost his appetite. It has been over a week now and it hasn’t returned. He just has a craving for “soft pretzels at the moment. Any food he eats at the moment is good news!

Anyhow, he has physically been recovering and feeling better. He was even able to make it to school for a half day last week. That’s a BIG DEAL! (The kids and Isaiah are so glad when they see each other!).

As expected about now --Isaiah’s counts have bottomed out. Unfortunately he has a temperature and it is high enough to land him in the hospital so that the IV antibiotics can be started. As I write this (late Tuesday night 10-15), he and Sal are heading for the hospital. We hope that it is not a long stay.

We are busy preparing for our trip to North Carolina. It is quite stressful just thinking about moving and what to take. I look at it as a ‘good busy’ as it takes my mind off (at least temporarily) why we are going down there at all. My mind still works with only planning the next 10 days and trying not to go beyond that. Seems to be working pretty well for me.

We’ve had some fabulous fall weather in Michigan and have enjoyed it so much. The boys have had more of an opportunity to play outside and that is always good. The cold front is now here but the skies have been blue and the air crisp. The winds have picked up and the leaves are finally turning colors and falling of. It really feels like fall now.

Again and always, THANK YOU to all who have been praying for us and helping us. We are very grateful. We continue to pray for God’s guidance in every step of this journey. May God bless you.
Pat, Sal and boys.

Wednesday, October 02, 2002 at 10:56 PM (EDT)
Last week Isaiah's counts recovered and we were able to celebrate Isaiah and Sal's birthdays. Sal got his "never ending bowl of pasta" at the Olive Garden Restaurant. Isaiah got the violin he wanted so much for his birthday too. He could hardly wait to open it. Now if he could only tune it --he might be able to play some of the simple pieces he learned at Summer Fun With Strings at the Flint Institute of Music last summer! The latest news is that we are still on schedule to go to transplant at the end of the month. We will now be going to Duke University Medical Center in Durham, North Carolina. Sal, Isaiah and I went there for a consultation this week. We have decided that this is the best facility for Isaiah's transplant because of many factors. For one, Dr. Kurtzberg, who is the pioneer with cord blood transplantation is the director of the facility. Cord blood transplants are their specialty and they have done more of this type of transplant than any facility in the United States and probably the world. There are a lot of things to figure out yet and take care of --that's for sure. Having the transplant in North Carolina means staying for 4-6 months. We feel that due to a sequence of circumstances and having asked for the Lord's direction in all of our decisions --this is what we need to do. It has all been very overwhelming --but again, one step at a time, one day at a time is how we have to proceed. We are going to the hospital Thursday, October 3 for another 5-day stretch of chemotherapy. Isaiah will be using a drug he has had before and has (in the past) experienced very unpleasant side effects. We hope that this time he won't have any of those same experiences. Of course, after he is done with this 5-day course it will suppress his immune system completely...to almost nothing. He will have to go another 10-day series of shots to boost it back up. When he recovers, we go to transplant. THANK YOU to all who have been praying for us and helping us. We are grateful and very humbled. We continue to pray for God's guidance in every step of this journey. May God bless you.

Saturday, September 21, 2002 at 04:59 PM (EDT)
We spent the week of Sept 9-14 in the hospital up in Flint. All things considered it went well and Isaiah did not have any of the side effects he’s had before with the IV drugs. These were some heavy hitting drugs which required lots of hydration and rescue drugs given to stop the drugs in their tracks once they did their job. Urine was frequently checked for blood and other things. Need I say more?

The following week we were at the clinic every other day for CBC’s (complete blood counts) and we watched as the “counts” (i.e. the ability to fight infection), plummeted. This is to be expected. At the same time we are getting a daily does of a drug called Neupogen that stimulates White Blood Cell production to help the body recover. There are so many pokes going on that Isaiah is just getting tired of it--poor kid.

We were able to fit in a few game of bowling on the boy’s bowling team last week. It was probably the highlight of Isaiah’s week despite the fact that he didn’t bowl well and we could tell he was very disappointed in his scores. We tried to remind him that it’s his first time out in months and everyone get a bit rusty when they don’t practice.

Isaiah birthday is on 9-22 and was looking forward to go to Chuckie Cheeses but that will have to wait. He told me yesterday that it's O.K., he can wait to celebrate his birthday till after transplant. (He DOES know how long that might be -many months). I replied that we can celebrate now and afterwards --and more than once! Unfortunately, we have to go to the hospital for another couple pokes and possibly for a red blood cell transfusion. This is certainly very scary for us in light of the West Nile Virus threat being spread by donated blood.

Transplant time is drawing nearer and oh how I wish I could stop time. I can only say that the decisions that need to be made before transplant are (for me [us]) absolutely agonizing. The cord blood has arrived from Europe, and I can only thank that mom who had the foresight to donate her cord because it is my child's only hope at this point. It just brings me to tears gets me all choked up.

Again, THANK YOU to all who have been praying for us. We continue to pray for God’s guidance in every step of this journey. Thank you all very much and may God bless you.
Pat, Sal and boys.

Sunday, September 08, 2002 at 12:28PM (EDT)
Hey can we stop time?!

I’m sorry that it has been almost a month since the last post.
I’ll start with a bit of fun news. The week before last (due to good counts) we were able to take an opportunity to send Isaiah to school for one day 8-28!!! Now that was a treat. He was so thrilled. But it gets better. After school we packed the boys up and headed to Cedar Point. We spent the night there and headed early to the park for a full day of fun. The weather was perfect, the lines were short and we all felt good. I even decided to try a Dramamine so I could make it on the rides with the guys without spending ½ the day recovering. It worked out well. Isaiah started with an official park measurement band that said he was 48 inches and then ran off to the Millennium Force ride (which is on of those extreme rides) with Sal (while Mishael and I waited). He loved it. We had a grand time. Yes, Isaiah did talk me into riding the big ride (Millennium Force) and I must admit it was a thrill. We got home to Flint very late in the a.m.

O.K., back to reality. On Tuesday the day after Labor Day we went to Children’s Hospital in Detroit for collection of Isaiah’s stem cells. They will be frozen and stored only to be used in an emergency situation. The procedure entailed taking out his port (which was where he got his chemo). It was conveniently under the skin and working well. Unfortunately we had to trade it for a huge catheter that would be used for collection of stem cells and eventually for transplant. The surgery and stem collection took a lot out of Isaiah (and us too). As we did not get enough stem cells the first day we had to continue into day two. Finally late that afternoon we were done. Now we needed a platelet transfusion. We waited for platelets to become available --for hours. For those of you who have been singled out as having good platelets PLEASE be GENEROUS. There is such a big need for platelets.

We finally got home to Flint very late in the a.m. Isaiah’s recovery has been tough because it has been painful for him. It was more than he expected physically and emotionally --I’m sure. He misses his Port and probably can’t understand why he has these 2 tubes hanging out of his chest. I am learning to flush them daily and am a slow learner. The fact that they are so big (adult size) makes them even more prone to clotting and infection. What pressure that is! Virus and infection are among our biggest threats to treatment.

We are still waiting on the final information regarding the Cord Blood selection process and if indeed we do have something in hand. This will be the only route for us. As my mind only functions in 10-day increments (that’s about all I can handle), I will not go into any more detail. That’s why I ask at the beginning of this journal entry if we can stop time.

We are heading to Hurley Hospital (near us) for a 5-6 day stay for IV chemo starting Monday, Sept. 8. These are drugs Isaiah has not had before so we don’t know what to expect. We are not looking forward to any of this. Sometimes it all seems so surreal --we felt this especially in Detroit because everything was so different and so new.

Again, THANK YOU to all who have been praying for us. We continue to pray for God’s guidance in every step of this journey.
Thank you all very much and may God bless you.
Pat, Sal and boys.

Tuesday, August 20, 2002 at 11:39 PM (EDT)
Well another week has gone by. Isaiah’s appetite has increased due to the steroids and he has lost all his hair. It happened so fast this time. Last time it took months for it to just thin out. This time it took 10 days and it was coming out in handfuls. In fact we had to buzz it because it was everywhere and it was really bothering him. It was emotional for me when Sal cut it off as I wondered when we would see that beautiful, thick brown hair again. Yes those are little things -but now every time I look at him I am reminded of reality. Isaiah took it rather well. A few days later he said, “I look different --but I’m still the same old silly me”. Yes indeed.

Last week’s spinal tap in PEDS ICU went as well as could be expected. The main thing is that the results are negative. One nice diversion at the hospital that day was that had something called “Paint Fest”. There was a lot of painting going on all over. We were able to paint by the nurse’s station in PEDS ICU and Mishael and I had an opportunity to help. I must admit that it was very therapeutic for me and we all enjoyed it immensely! Mishael and Rick (a new friend from Pfizer pharmaceuticals, the sole sponsor of Paint Fest) were pictured on the front page of the Flint Journal the following day. That was really nice. Isaiah was able to participate and paint the giraffe at the PEDIATRIC ICU station on the second floor after his procedure.

This was also the last week of summer vacation for the boys and they enjoyed their time together building roller coasters and amusement parks on a new computer game. Well, if you can’t go --then that’s the next best thing!!

School started yesterday and we thought we had prepared Isaiah as well as we could. He was sad that he couldn’t go. We painted some pictures at home. He seems to have taken an interest in painting the last few days. It must have been that the “giraffe” that he painted has sparked this new interest. After school the boys had a golf lesson. Isaiah has asked to take golf lessons going on three summers now so we thought that this might be a good chance to give it a try. It worked out very well and took the edge off of not being able to start school. The boys had a blast and so did mom who drove the golf cart.

Today (8-20) was the last in the relapse induction series of spinal taps (that makes 5 in a row). We do however have a bone marrow aspiration under anesthesia so we will be back in ICU next week too. It is nice to visit that “giraffe” at the PEDS ICU nursing station. Our surprise of the day was that Rick (Mishael and Isaiah’s painting pal from Pfizer), showed up with lunch and drinks for all of us just at the right time. Isaiah had just asked if I could make a burrito run --and there he was (bless his heart) with the right “food order” and just the drink that Isaiah likes! Mishael was disappointed that he missed him.

In September we start the next treatment phase called “Consolidation” which is a series of hospitalizations for high dosage chemotherapy lasting about 5 days each. We also have a stem cell harvest and new port placement scheduled for Children’s Hospital. It is enough to make you loose all track of time, but most important is Isaiah’s birthday on September 22. Another milestone that isn’t taken for granted, another answer to many prayers.

Thank you to all who have been praying. When I feel really joyful out of the blue --I feel that someone must be praying for us! What an incredible feeling that is! Once again, please keep us in your prayers so that we make the right decisions and let God control this journey. We still don’t know if we have a donor for the transplant. We are praying for God’s guidance. We walk in faith and proclaim Jesus’ name as our Lord and Savior. He gives us comfort, strength and hope for each new day.
Thank you all very much and God bless you.
Pat, Sal and boys.

Monday, August 12, 2002 at 02:13 PM (EDT)
We’ve been taking life day by day. There is no other way to go through this journey

We picked Mishael up after a great week at “Special Days Partners Camp”. He had a wonderful time again this year. Many heartfelt thanks to all the special staff and volunteers that make this camp happen. Some come from different part s of the US and even England just to volunteer!!

Isaiah followed with “Special Days Camp” the next week. We got off to a rough start on Isaiah’s way to Special Days. He was in a lot of pain and just not feeling well at all. He also got sick on our drive and we had to turn around and go home to collect ourselves but in a short time Isaiah was ready to go. When we got to camp Isaiah said he was feeling better. In no time he was catching up with his old counselors and playing games with some of the kids. He has always LOVED games, board games, active games, game shows, word games, and Isaiah’s rules games. We left Isaiah at camp knowing he was in good hands.

Isaiah had to leave camp early for his next spinal tap on Tuesday. It was a very long day at the hospital as there were no beds available in Peds ICU. Isaiah could not pull himself together to get his procedure done in the clinic without anesthesia. He was willing to wait and wait and not eat or drink anything. And wait we did. It was about 3:00p.m. When we finally got up to ICU and things were ready for the procedure. Thanks to Isaiah’s oncology nurse Mary who pushed all the buttons to get into ICU and all the other staff who made things happen --we were able to get back to camp in time for the circus. We stayed and enjoyed the kids performing for us on a beautiful summer night. (We are so grateful to the prayer group at camp that prayed in the morning and included Isaiah in their prayer --praying that he would be able to make it back. Our prayers were answered.)

We had our consultation with Isaiah’s transplant Dr. at Children’s Hospital on Friday August 9. I won’t go into much detail because I am struggling with it all at the moment. We have some major decisions to make (Sal and I) regarding the transplant which is to take place tentatively in the October time frame. (This is provided that the umbilical cord is available and can be used. I keep on telling myself (as I have in the past) that we have to take this day-by-day. This road is going to be very frightening and life (again) will never be the same.

On Sunday, August 11,(yesterday) we had hoped to go to Cedar Point in Ohio. Before we could go, Isaiah went in for blood counts and it was definitely a NO GO. He cried but moved on and made some other choices for the day. I honestly don’t think he was feeling physically strong either. We sure are limited in our activities now. His counts have dropped dramatically in just 4 days and he is at great risk of infection. Hair is starting to fall out in clumps. Steroids have kicked in and appetite is voracious --especially for chili beans, refried beans and Corn Flakes! Fortunately Isaiah doesn’t exhibit much of the personality change (side effects) that steroids are known to cause. He’s pretty happy most of the time -which for us is a beautiful blessing.

For those of you who pray, please keep us in your prayers so that we make the right decisions and let God control this journey. We walk in faith and proclaim Jesus’ name as our Lord and Savior. He gives us comfort, strength and hope for each new day.
Thank you and God bless you all.
Pat, Sal and boys.

Tuesday, July 30, 2002 at 09:45PM (EDT)
Since last week (7-22) I have been hoping that the suspicious looking cells found in Isaiah’s Spinal Fluid were just immature white blood cells or some kind of mistake in reading the slides but reality has set in. It is definitely a relapse and it is not any kind of mistake. It is called a Central Nervous System (CNS) Relapse. The results of last week's Bone Marrow Aspiration (BMA) confirmed that Isaiah's bone marrow is clear and therefore it is a relapse in the CNS only (thank you Lord).

Fortunately the Dr. did not place any restrictions on activities and we proceeded with plans to go to Michigan Adventure Park on the west side of the state. It was a glorious day. A nice break from the hot and steamy weather we’ve been having. Isaiah went on all the big rides as he is, (with shoes) 48” tall. He fit in as many of the big rides as one could possibly fit into the day. I tried to be a good sport and rode each one once. Unfortunately for a good part of the day I spent going from bench to bench trying to recover! We all had a wonderful time though. Isaiah exclaimed upon leaving the park that “this was a great day --I had so much fun!” And so did we just knowing how much the boys were enjoying themselves. Mishael had his own set of favorite rides and we let him ride his favorites numerous times too.

We had another spinal tap today (Tuesday 7-30) and started on a new chemo protocol. It got off to a very difficult start (emotionally for Isaiah) and has lots of chemo. It is going to be much more brutal than the previous one which was bad enough. The hardest news to digest was (is) the reality that we will indeed need to proceed with the bone marrow transplant. It is not our best hope but the “only hope” medically speaking. We still do not have a suitable bone marrow donor after having searched for almost 15 months.

I keep on telling myself (as I have in the past) that we have to take this day-by-day. This road is going to be very bumpy and frightening and life (again) will never be the same.

For those of you who pray, please keep us in your prayers so that we make the right decisions and let God control this journey. We walk in faith and proclaim Jesus’ name as our Lord and Savior. He gives us comfort, strength and hope for each new day.
Thank you and God bless you all.
Pat, Sal and boys.

Sunday, July 14, 2002 at 9:30 pm (EDT)
School has been over for about three weeks now and we have really been enjoying the summer. T-Ball has started for Isaiah and Pee Wee league for Mishael. They seem to have grown a lot since last year and are on different teams now and play on different nights --so we are going to games 4 nights a week! We managed to fit in planting a garden. Isaiah has some sugar baby watermelons and Mishael insisted on carrots. They check on their garden every day. (I managed to plant some flowers too!)

A kind member of our church gave our family Red Wing Stanley Cup playoff tickets. What a thrill that was!!! Isaiah went with his dad. Of course when I broke the news to the boys, Mishael cried because he couldn’t go. But he recovered quickly because I told him he could chose whatever he wanted to do while they were at the game. He and I had a grand time together while Isaiah and Sal had a grand time at the game.

Isaiah has been feeling pretty well although there are moments of weakness here and there. He usually has pretty good energy and as soon as he’s feeling weak we try to get him something to eat. He has a pretty good appetite most of the time so that helps. He had another spinal tap some weeks ago and is getting very brave about not having anesthesia. It’s so hard to watch and be there as a parent. The results were clear once again. Praise the Lord.

Mishael spent last week at church camp and had a great time. The house was very quiet and we missed our little spark plug! Mishael has this strange way of creating a lot of “activity”. I bet he did that at camp!

We continue to try to have a normal summer. The boys have Fun with Strings planned for next month at the music school. Mishael would like to play the cello and Isaiah has his eye on the violin. They did this 2 summers ago and really enjoyed it. They hoped to do it last year, but of course that was out of the question for us --so we’ll give it a try this year.

I wanted to take this opportunity to let those in the Flint area know that there will be a Bone Marrow Drive in the Flint area on Thursday, July 18 from 1-7 p.m. If you know anyone who is interested in joining the registry -please let them know. I will post the specific information as soon as I find out where it will be held and will confirm the times. Please spread the word! We are still hoping to find a bone marrow donor.

Again, thank you all for your prayers and nice notes to Isaiah. It is very much appreciated.
Pat and family.

Liz Shaw from the Flint Journal wrote a very nice article about Isaiah recently. She really captured our feelings and the current situation so well in the article. Liz has followed and written about Isaiah’s in the past year and helped us to spread the word about getting on the National Bone Marrow Registry and other things associated with the roller coaster of emotions that our family has experienced. The link is the following:

http://www.mlive.com/news/fljournal/index.ssf?/xml/story.ssf/html_standard.xsl?/base/news-3/102353880511160.xml

Please note that the entire link needs to be on one line for it to work. It should pull the article right up.

Sunday, May 19, 2002 at 02:10 PM (EDT)
This past week has probably been one of the most uplifting weeks since diagnosis. Isaiah’s test results from Children’s Hospital confirmed that Isaiah is still in a solid remission (with no presence of chromosome translocations). This is certainly an answer to prayer for us. Thank you to all of you who have been praying for him (and us). We appreciate it so much and we certainly have seen the power of prayer in our lives demonstrated countless times.

So what does this mean that Isaiah’s test are negative? Well, in emotional terms we have been able to take a little “breather” at least for a few days. We will not go to transplant at the moment and have one more year of chemotherapy left. We will continue to savor every moment as we still don't know what tomorrow will bring. We have more work to do, more questions to ask and more research to do...

After hearing the good news I feel that we have our summer back. We can plan of T-Ball, Survivor Camp and Music Camp (and other simple things that so many us take for granted). It is truly an exhilarating feeling. The boys wanted to plant a garden and I was afraid that that would fall through. But I must admit I got them new gloves, trowels and knee pads for planting purposes before we heard the test results. We will not take any of that back…hurrahs!! I don't think I've ever looked so forward to spring planting like this year!!!!! Now if only the weather would warm up a bit! We might even hit some amusement parks in the next month or so.

Last weekend we went to Grand Rapids for the Coca Cola bowling tournament. (Both boys qualified and we were looking so forward to going.) We all had a great time. The boys did very well and I think they had a lot of fun. We really don’t know how they scored in relation to the others but it doesn’t matter --we had a wonderful weekend together. I have to mention that we stayed (our first hotel stay since diagnosis) at the Hampton Inn for a night. I called ahead and just asked for them to change the blankets and us out by changing the bedspread and some other little details. They really had the room spotless and everything was so clean. How we take things (like even that) for granted when we don’t have to worry so much about germs and being immuno-surpressed. It was a wonderful Mother’s day spent at the bowling alley!!

We are now finishing off the school year and in a few weeks Isaiah will have another spinal tap. The tests will show if there is any leukemia in his central nervous system. Then we will look forward to T-Ball and some good weather.

Again, thank you all for your prayers and nice notes to Isaiah. It is very much appreciated.

Tuesday, April 30, 2002 at 11:30 PM (CDT)
There is quite a bit to share -but I will try to make it brief. It sure is a mixed bag of emotions.
We recently got back home from a trip to California where we visited our good friend and did another tour of parks and amusements. It was like a second Wish Trip for us. We were able to visit places such as Legoland, Santa Monica Pier, Six Flags Magic Mountain, Knott’s Berry Farm and a neat old park called Castle Park. We used our World Perk Miles that we have saved for over 10 years. We wanted to visit our friends and the saved miles really made the decision for us --and rather quickly I may add!

The boys enjoyed every minute of our stay. We learned that Isaiah is indeed a thrill seeker and is very persistent about getting measured for the rides that are for people over 48 inches (which he is not yet). He managed to get on some of them (with our approval of course --some of the older non-Xtreme rides!). He is definitely brave to try new things. I admire his persistence because I believe that he will have to draw on everything he’s got to get through this journey. Mishael likes the tamer rides and says that he doesn’t like heights. But he did try quite a few things too. They had a grand time together and each park was a favorite at least for that particular day.
We returned home late at night and the next morning was our weekly clinic visit. It was back to reality. It sure was nice to get a dose of sunshine and mountains and spend some time with our good friend and her family. We really needed that. It was a bit difficult to recover from the time change and the trip but well worth it. How precious the memories are.

And now the dose of our reality and a request for prayers from those of you who would like to pray for us to make the right decisions. We have been informed by our hospital that there is an available umbilical cord for Isaiah that is a good match. We have been asked by our transplant Dr. to come to Detroit to have Isaiah tested using a test called an MRD (Minimal Residual Disease) test which will determine if there are any leukemic cells in his bone marrow. If there are, then the recommendation will no doubt be to go to transplant. One thing to note is that cord blood has been successfully used in numerous transplants. The problem is that if Isaiah should relapse after the transplant, there is no “live donor” to go to try anything else. If we decide not to transplant at this time because of the results of the MRD test then the Cord will need to be released. Then, if we should relapse, chances are we have nothing to fall back on. The cord blood (as successful as it has been for transplants) is actually our Dr.’s third choice with related sibling BMT first, unrelated bone marrow donor as second. This is a scenario that we did not anticipate and are really torn about having to make a decision. I have had sleepless nights in the last few days and ask for your prayers for God to give us guidance in all of the decisions we need to make now and in the near future.

Isaiah will be having this bone marrow aspiration on Friday morning under local anesthesia. We pray for an uneventful day and good results. We let Isaiah know of the planned test and he took it all in bravely only asking if it would hurt. Satisfied with our answer he moved on to finishing his hockey game on the Playstation at the clinic.

Friday, April 05, 2002 at 07:14 AM (CST)
Our spinal tap on Tuesday went quite smoothly. It is always a very difficult day. Isaiah had some weeks to think about if he wanted to do it downstairs in the clinic (without anesthesia) or upstairs in ICU with local anesthesia. He decided to try downstairs. When the time came, of course he wanted to “go home” but he was brave. A few nights before the procedure he shared his thoughts with me. He said, “you know mama it really hurts and sometimes I think it will last forever. But then it’s done”. Oh does that hurt a mother’s heart!!

We finally caught on to why he decided to start trying the spinals in the clinic again (as opposed to upstairs with local anesthesia) some months ago. Because Tuesday is BOWLING DAY! He had it all figured out! If he does it early enough in the day without anesthesia, chances are good that he will recover in time and feel good enough to go bowling. Spinal days are very difficult for us too. It is VERY intense for many reasons. Of course, the best news of all is when it’s all over with and you finally hear that results are “negative” (which they were). When we hear this we are temporarily “on top of the world”. We also had an x-ray taken because of Isaiah's persistant cough and were very relieved that it is not pneumonia. After about a month of coughing it seems to be getting better.

THE GAME UPDATE: Isaiah and Mishael attended their first Red Wings game last Thursday, March 28. Heather Catallo from WXYZ TV -ABC 7 in Detroit helped make the arrangements for us. Heather and Isaiah ‘connected’ last year when Heather came to Flint to do a story prior to one of our bone marrow drives in the Detroit area.
We arrived to Joe Luis Arena where we met with Heather and Ted (from the Red Wings organization). Ted gave us all a wonderful tour of the facilities and we definitely felt the pre-game excitement from behind the scenes. The boys were able to sit in the penalty box during the pre-game warm up--that’s about as close to the players as you can get! Just before the game they both rode on the Zamboni machine. Of course Sal and I felt such joy at watching the boys having such a wonderful time. We enjoyed every moment of the tour and the game! We appreciate so much the kindness of all those who made it possible for us to have such a grand time.
The story is going to run on Sunday, April 7 at 11 p.m. and perhaps Monday morning in the a.m. on WXYZ (ABC 7).

Ah, the story does not end here. The next day we were able to go to a Red Wings practice. The practice had been arranged by Isaiah’s wonderful Oncology Nurse Mary, who had diligently worked on it since November of last year. It just so happened that the game and the practice were back to back (thurs/fri). Really perfect timing and rather convenient for us. (An added bonus was that we go to spend a few days at Grandma’s house near Detroit). After practice, we were able to meet Steve Yzerman. For those of you hockey fans --not only is he a great player but a real gentleman as well. Also, Darren McCarty had given the boys hockey pucks while they were in the penalty boys the night before and happily came out to sign it after the practice. The boys were thrilled.

We had a quiet Easter at home recovering from the busy schedule that we had. Isaiah did not feel very well on Wednesday and Thursday. He had a lot of soreness in his back (from the spinal tap) and nausea (from his chemo). But he managed to go to school and Wednesday and Thursday. Yesterday at the end of the day he told me that it was a “great day”. Mishael also had a great day and Mom and Dad were very happy……

Thank you all so much for your prayers and guestbook entries. We appreciate it very much. Just so you know, Isaiah has read every entry thus far.

Thursday, April 04, 2002 at 10:49 PM (CST)

Friday, March 22, 2002 at 09:00 PM (CST)
Sometimes I wish we had started this journal earlier, but I suppose we really were not up to it until now. So here is a short synopsis since diagnosis. The last 17 months has been an incredible journey. So difficult and painful at times but filled with joy and wonderful memories as well.

After the initial shock of diagnosis and one blow after another that followed (including the need for a Bone Marrow Transplant) we tried our best to “take one day at a time”. It is a cliché, but for us it was (and is) our reality.

Winter and spring of 2001 was filled with fourteen hospital stays and staying away from crowds. We had four Bone Marrow Drives and two fundraisers (musical concerts) at U of M Flint in May and another one in Troy in October. We are so grateful to all those who helped put these events together because it was a lot of work on everyone's part. We had about 800 people added to the National Bone Marrow Registry in a few months time. We had four potential matches (for someone somewhere) from our drives. This included only the people we know that were typed. There might have been some matches from others as well. The media and some of the newspapers were fantastic in helping us advertise and spread the word. In fact some of the reporters have been kind enough to call (quite recently) and check in to see how Isaiah is doing!

Summer came and outings became more frequent. We all savored each moment of this new "freedom". The semi-monthly hospital stays for the intense chemo stays were done. Chemotherapy continued (and continues) in the clinic weekly and oral at home daily. The boys played T-Ball and we enjoyed getting out a bit more in the fresh air and sunshine.

We stayed close to home all summer. The boys attended Camp by themselves for the first time. Mishael went to "Partners" camp by himself. It was for siblings of cancer patients. He loved it. The next week Isaiah attended "Survivor" camp. This was for kids that were survivors and others that were on treatment. We were very hesitant to let Isaiah go (he was probably the youngest at camp) but he decided to give it a try. We thought he would stay perhaps 2-3 days but he stayed the whole week and loved it too. (They went together in January 2002 to the same place for Winter camp). They again had tons of fun.

September was the month we chose for our Wish Trip. We planned on going at the end of the month. After the September 11 tragedy we decided to keep our same plans. It worked out well. The place we stayed was called Give Kids The World in Orlando, Florida. What a wonderful organization. We had a great time and enjoyed the amusement parks and the villa we stayed in. It was a very special time for us. We have great memories and since the crowds were few at the time --we were able to do quite a bit of site-seeing. The kids often ask if they can go back for a visit to GKTW.

Isaiah is doing as well as can be expected. In spite of everything he is a happy and well adjusted child. He loves games (of any kind) and sports. He follows the Red Wings and dreams of going to a game. He loves to play hockey with his mom outside. Mom likes to play when the weather is nice. Both Mishael and Isaiah have been bowling on a league since last September. They are enjoying this immensely and have qualified for the Coca Cola Bowling Tournament in Grand Rapid, MI in May. It's another milestone to look forward to.

Mishael loves school and enjoys math, recess and lunch (of course in reverse order). Isaiah has attended very sporadically, a few days a month. When his counts are low we keep him home. For awhile there he just didn't feel well for weeks on end so he stayed home. (We think it was some kind of flu -but it was also a very scary time for us). The boys still play the piano and are progressing well. Getting them to practice is not always easy but they say they want to continue with it.

So this is a glimpse of life at the Bingham’s. We look forward to every day and pray for continued remission as the perfect “match” for Isaiah has not been found yet. We praise God for his blessings and goodness. We thank all who are praying for us and we pray for you too. We are grateful for all the wonderful people we have met along the way, new friends and old friends who have been supporting us on this journey.

We will try to keep the journal updated as perhaps this is a convenient way to keep in touch for all.

Monday, February 25, 2002 at 09:13 PM (EST)
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