Finally a chance to update. Colin's LAST 24 hour in-patient stay with chemo (Ara-C) was on Monday. I will probably be saying this over the next several weeks, but I can't believe we have gotten to this point!! 2 years sounded like forever, and here we are almost at the finish line. Some of us feeling and looking a bit more than 2 years older!! As we left the HOT unit on Tuesday night, I received a lot of hugs, and some tears were shared. Colin on the other hand was practically running out the door yelling "see you never again". That's an 8 yo boy for ya!!

Colin's chemo stay went very well. Many people on the HOT unit went out of their way to make his last overnight special. He was spoiled by many. We had a Pizza party on Monday night with family. Thanks Aunt Mary, Uncle Tim, Ryan and Katie; Aunt Kathie, Uncle Shawn and Maureen for coming and celebrating with us! Colin and I also made a batch of Scotcharoo's to share with the nurses and HOT unit employees. I heard that they went pretty fast. It is our hope that the only time we have to return to the HOT unit in the future is for visiting and dropping off treats :-)

Colin is back on the GCSF shots this week. Again counting down the fact that this will be his last 10 days of doing them.

The kids are enjoying their last week of summer vacation. They head back to school next Wednesday! Wow, that went really fast.

Thank you Kathie and Shawn for taking the girls to the zoo on Monday. They had a lot of fun. And thank you Barb for spending the day with the girls on Tuesday, and for dinner when we got home!

Thanks to everyone who has sponsored Team Colin!! We have reached our goal, but would love to go over. CLICK HERE TO SPONSOR TEAM COLIN

Jan and Family

Some pictures from Monday/Tuesday's stay on the HOT unit:


Pizza party; Kelly and Clint play pool; Colin and Jan playing videogames.

Colin and his frog balloon; Dr. Casper and Colin; Colin's Hot Unit nurse practitioner Amy (another awesome person)


Colin and Ann, the art therapy specialist -- she spent a great deal of time with Colin helping him with various art projects; Colin and one of his favorite nurses Ann; Colin and Theresa -- she has been on the HOT unit since we started going there in '97. She is another very special person.

Colin and another favorite nurse Karen; and Colin playing in his room.


Colin and Jill, the Child Life Specialist; Colin and another one of his fav nurses; and Colin back home playing with his buddy Dallas

Monday, August 16, 2004 11:14 PM CDT

We had a wonderful weekend in Door County. The weather was perfect -- warmed up to the 70's and was sunny all weekend. I'd say we had the best time we have had in a long time! It was so relaxing and enjoyable. On Sunday Clint, Kelly and Colin went for a 1 1/2 hour catamaran sail. Emma wasn't interested in going on a boat, so the two of us went shopping instead. After sailing, we went go-karting. This year both Kelly and Colin were tall enough to drive their own cars. Colin was a natural at it. Kelly and I decided to ride together. We then went to Peninsula State Park and climbed the tower. And on our way out of town we stopped and picked up a Cherry pie for my b-day dessert. We had a great time and already have a list of things we want to do when we return next summer. (I put new pics in the photo album)

Colin had his clinic appointment today. We did his labs at Children's and then went to the clinic for a checkup and a push of Vincristine into his port.

Tomorrow and Friday, Kelly and Colin are going to Rainbow Day Camp. This is a camp that was founded by one of the oncologists at Children's Hospital, Dr. Dave Margolis. It is for children with cancer AND their siblings (over the age of 5). They get to choose from various a ctivities like boating, fishing, swimming, climbing tower, archery, arts & crafts. The kids have done this camp the past three years and have always enjoyed going.

Hard to believe that summer is flying by so quickly!

Jan

September 25 is Al's Run/Walk for Children's Hospital. Click here to make a donation: TEAM COLIN

Friday, August 13, 2004 9:39 AM CDT

This week is our off week from clinic. I took the kids to Prairie du Chien for a few days. Our plan was to go swimming -- however, it feels more like fall here this week than summer. It was in the low 60's all week! We were glad we brought the bikes along.

Colin did his 4 doses of Methotrexate on Tuesday. They increased his dose a bit, so he ended up having to take 12 pills each time. He is on 6MP for the rest of this week.

Tomorrow morning we are heading up to Door County for the night. The kids have never been there, so are looking forward to the trip.

This week ends another cycle for Colin. Next week he will be starting his FINAL cycle of drugs. The countdown is on!!

Jan

September 25 is Al's Run/Walk for Children's Hospital. Click here to make a donation: TEAM COLIN

Monday, August 2, 2004 7:55 PM CDT

Colin's chemo was scheduled for today instead of his normal Tuesday appt. We did this because he ended his antibiotic last night and we wanted him to be able to get deaccessed (needle removed from port). He was so happy to be rid of the needle after his chemo. Today was week 4 of his cycle (see above for details). He also started back on Prednisone. His dose was increased to 150 mg a day! Hopefully he will feel okay with this higher dose. The one good thing about it is that instead of taking 3 pills (two 20 mg and one 5 mg) three times a day, he can now take 1 pill (50 mg) three times a day. Less pills to swallow down.

Yesterday afternoon Colin "stubbed" his foot on the piano. Today it was swollen and painful to walk on. Looks like he may have broken his little toe. They don't take an x-ray of the toes since there isn't anything they can do for it. Hopefully it will heel up quickly for him.

We had a great time at the O'Neill family reunion. The kids had a lot of fun playing with their cousins. Once again I'm reminded how fortunate I am to come from a big Irish family :) It was great seeing everyone again.

Thanks for checking in on us.

Jan




Team Colin --- raising money for Children's Hospital of Wisconsin. Click here to find out how you can help: TEAM COLIN

Colin is doing well this week. He had his spinal tap on Tuesday, and everything went well. We are to the point now where we can say "just a few more back pokes". YIPPEE! I'm not really sure what the plan is for doing off treatment spinals.

The antibiotic treatment is going well here at home. I am waiting for his Midnight dose to finish up right now. It takes about 30 minutes to run through his line.

When we got home on Monday, I spent a little time reading about the infection he had. It sounds like we were very lucky that we caught this right away and treated it immediately. Thank God! His cultures taken on Sunday came back negative. They will do cultures again when he finishes the Cefepime.

We are back at Children's on Monday for more chemo.

Also, Colin got his first hair cut in almost 2 years on Wednesday! He was so excited :)


Jan

Team Colin --- raising money for Children's Hospital of Wisconsin. Click here to find out how you can help: TEAM COLIN

(Posted by Clint, Colin's Dad) -- As of tonite, Colin is still in-patient at Children's Hospital of Wisconsin. He's doing very well. His temp has been normal for at least two days, and his ear pain is gone too. The main reason Colin is still in-patient is so the docs and nurses can keep an eye on the "bug" he caught. It turns out it is not "alcaligenes" as previously thought, but a much more common bug called "Pseudomonas Aeruginosa." You can learn a bit about it here. Colin is on an antibiotic treatment, and it's doing a great job fighting this bacterial infection.

Today we had a good day. We slept until 8:30am. Cousin Katie visited us in the late morning, and she and Colin made sand tubes and sand paintings (colorful art made with painted sand, clear tubes and sticker paper) while I ran for coffee. In the afternoon, Colin and I watched "Titanic." After drying our tears (hah), we walked around the hospital and even outside for a few minutes. It was bright and sunny, but a bit cooler than we expected. In all, it was a lazy Sunday... which are the best kind to have :-)

I'm at home with Kelly and Emma now, while Jan is back at the hospital with Colin. We're looking forward to him coming home on Monday. He'll likely need to continue his antibiotic treatment for 4-7 days, which will continue to be administered via the port in his chest. This means no swimming for Colin while we're at the family reunion next weekend. Other than that, he should be able to have a great time.

That's all for now!

-- Clint

Saturday, July 24, 2004 9:24 AM CDT

Update from Room 5523 at Children's Hopital of WI

We are still in-patient with Colin. He is feeling well. No temp for over 24 hours. However a bug did grow on his cultures. It is called alcaligenes. Right now they are figuring out what antibiotic will cover this unusual bug. He is on an antibiotic which they started on Thursday night. It is obviously doing something because he doesn't have a high temp and he is feeling quite well. It sounds like we will be here for another day or two, and then go home with IV antibiotics so they can treat it through his central line.

Colin's counts are on their way up which is a good thing for fighting whatever is going on. He will do one more of shot of GCSF tonight and can stop those. Also his platelets seem to be slowly going up on their own. So far he hasn't needed another transfusion. They were 24,000 last night and 26,000 today.

Bottom line is that he is out of bed, playing videogames and having a good day. He is bummed out about having to miss his friend Justin's b-day party today. But he knows he needs to get this treated. We will celebrate with Justin another day.

Thanks for checking in on us.

Jan and Colin

Click here to help us raise money for Children's Hospital of Wisconsin: TEAM COLIN

Friday, July 23, 2004 8:21 AM CDT

Quick update on our week:

Monday morning labs -- platelets were 25,000. Low, but not requiring a transfusion.

Wednesday morning labs -- platelets 14,000. Quite a few bruises and patichea near port site and legs. Went to Children's for a transfusion.

Thursday afternoon -- complaining that his right ear really hurt. Took him to the pediatrician. She diagnosed "swimmer's ear" and gave us a prescription for ear drops. Colin was in quite a bit of pain last night and temp was on its way up. By 10 it was 102.3. (whenever the temp goes over 101.5 we are instructed to call the HOT unit). Because we know Colin's ANC is low this week, they had us go to the ER. Clint took him to the ER and he was admitted to the HOT unit. They drew blood for cultures, took an x-ray and gave him Motrin for his ear pain. I think it was 1:30 a.m. when Clint called to tell me they were finally in a room on the 5th floor.

This morning I'm waiting for an update. I don't do as well being on this side of things. I much prefer to be with Colin when he is inpatient. I will call them in a bit, but wanted to let them get some sleep since last night was so crazy for them.

Please say a prayer for Colin, that his ear pain has gone away, that there is nothing else "brewing" and that his blood counts are on their way back up. He has just 2 months of treatment to go. It feels like we are at the 20 mile mark of running a 26.2 mile marathon and these last couple of miles are the hardest for all of us. We will all be glad when we cross the finish line. A much needed vacation for this family of 5 is in the planning stages.

Jan


Team Colin has met its first goal of $500! Thank you to those who have sponsored our team!! We have increased our goal. Click here for info on how to sponsor our team: Children's Hospital Walk

Thursday, July 15, 2004 9:13 PM CDT

Colin and I were back at Children's on Tuesday morning for his admit to the HOT unit. We got admitted quickly and were in our room by 10 a.m. Around 1 p.m. they gave him Tylenol, Vioxx, Zofran and Benadryl into his port and then started his chemo. The benadryl knocked him out pretty quickly and he ended up taking a 4 hour nap. I sat back in the recliner and read a book. Not something a mom of 3 gets to do too often. Later Tuesday Colin found out they were playing Bingo in another area of the 5th floor. We went and joined in the fun. As soon as he saw the prizes, he had his eye on a mini remote controlled car. Finally after about 5 games he won and he claimed his prize. He also came away with a Lego kit. The chemo stay went well. The Ara-C was finished up at 1:30 on Wednesday and we were discharged by 2:30. Last night he was pretty achy and running a temp. We monitored him throughout the night and gave him Tylenol and Benadryl around the clock as directed. This morning he was feeling much better.

Tonight we started up the GCSF shots again. We expect that his counts will drop over the next week and he will be back at Children's next week for platelet transfusions.

Today Colin showed me his mini remote control car -- it has now been taken apart, a propeller hot glued to the motor, and it has been transformed into a fan that is keeping him cool around the house. Mr. Creative. He sure is like his Dad!!

Thanks for checking in on us.

Jan

Thank you to those who have sponsored us for our walk in September. So far we are up to $275!!! THANK YOU.
Click here to: SPONSOR COLIN'S TEAM IN THE AL'S MEMORIAL RUN/WALK FOR CHILDREN'S HOSPITAL OF WISCONSIN

Friday, July 9, 2004 11:31 PM CDT

Today in the mail we received the pamphlet for the Al's Memorial Run & Walk for Children's Hospital of Wisconsin. This is a huge run/walk that raises money for Children's Hospital. Clint and I have run it quite a few times. This time we are forming Team Colin and are raising money for Children's. Please consider honoring Colin with a donation to Team Colin and Children's Hospital!! You can click on this link and make an on-line donation. So very simple :)And if you are looking for something to do on Saturday, September 25 at 10:15 a.m., please feel free to join us for a walk.

Check it out: SPONSOR COLIN'S TEAM IN THE AL'S MEMORIAL RUN/WALK FOR CHILDREN'S HOSPITAL OF WISCONSIN

Thanks!!

Tuesday, July 6, 2004 8:00 PM CDT

Colin started another cycle today -- week 1, cycle 15! His appointment this afternoon was for a checkup and a quick push of Vincristine into his port. Tonight he starts VP-16/Etoposide for 5 nights.

Last week's Methotrexate left him with some mouth sores over the weekend. He hasn't had those in a long time. They sure are painful for him -- he can't even smile because it hurts to much. Finally this morning he said they felt much better and he is smiling again :)

We enjoyed the 4th of July weekend in Prairie du Chien, then came home Sunday night for the Glendale fireworks. What a spectacular show, they get better every year. Emma and Kelly are in Prairie du Chien enjoying a few extra days with Grandpa and Grandma.

Tonight after Colin's appointment we met Clint for 18 holes of miniature golf; then Clint and Colin did a round of batting at the batting cages. Then we went to Chili's for dinner.

This Friday Kelly is going away for a weekend camp: Camp Angel. She went to Camp Angel for their winter campout in January. She had a great time and was excited to sign up for the summer camp. She is looking forward to seeing some of the same friends that she made in January.

Next week Colin and I are back in-patient for 24 hour Ara-C.

Thanks for checking in on us.

Jan and family

Wednesday, June 30, 2004 11:33 PM CDT

This week Colin is doing oral chemo (Methotrexate and 6MP) at home -- no clinic appointment. So nice! Yesterday was Emma's 4th birthday. She is growing up so quickly. She was born one month after Colin ended his treatment the first time. Now she is the same age that he was when he ended treatment. She had a fun filled day yesterday and is quite happy telling everyone she is 4! Her dinner request was Scooby Doo Macaroni & Cheese and a Dairy Queen ice cream cake. We also grilled burgers and hot dogs for those who didn't want Mac & Cheese.

We are keeping busy this summer. On Saturday, Clint and Colin went on an overnight campout with the boyscouts. And on Sunday, Grandma L. took the kids to see Annie at the Fireside Theater in Ft. Atkinson. They really enjoyed the show. Kelly is playing softball on Monday and Wednesday nights. And we find other activities to fill up our days. Tonight the girls and I saw Kids From Wisconsin perform at Whitefish Bay High School, as part of the Music in the Glen summer concerts. What a great show! Clint, Colin, Tim, Ryan and Megan all went to see Spiderman 2. They gave it thumbs up.

On Friday, Colin has an appointment with the dentist. He has 3 cavities that need to be filled. He will be taking a mega dose of Amoxocillan one hour before the appointment. His blood counts are good this week, so it is a good time to get the dental work done.

Last week our little friend Caitlyn lost her battle with Juvenile Leukemia (JMML). She was just 5 years old. I became friends with her mom through our many inpatient stays and seeing each other in clinic weekly for the past year. I went to the funeral in Illinois on Saturday with my friend Grace (another parent of a child from our clinic). Our prayers are with Caitlyn's family as they go through this very difficult time. I will miss seeing her smiling face in the 8E clinic and HOT unit of Children's Hospital.

Jan

Wednesday, June 23, 2004 11:35 AM CDT

Yet another week of treatment marked off the calendar! Colin and I were at Children's first thing yesterday morning for his long day of chemo (cyclophasphamide). He didn't pass the urine dip test, so had to be prehydrated for a few hours. His urine test revealed a "large" amount of blood in his urine. This seems to happen off and on throughout treatment -- however, not usually at this point in treatment. Colin has not complained of any pain when urinating or any other symptoms that may have indicated an infection. Since he was feeling fine, and his counts were good, it was decided that we would go ahead with his chemo. After his nurse Kathy hooked him up to his CYC, we headed down to the cafeteria for lunch. By 3:30 we were done with posthydration and deaccessed to go home. Colin started back on the 5 days of Prednisone yesterday. Oh joy!! We drove straight to Sendik's for a pound of shaved honey ham :-) His favorite!

Colin now has a full head of dark hair!! Ever since he stopped getting Doxorubicin (in March), his hair has not fallen out. Before then it would start to grow in and then all fall out again. Well apparently Doxo was the drug that was doing it. It is coming in nicely and he sure does look handsome (as always). I think we may even have to get a haircut this summer. Which would be the first time since relapse in September of 2002!! He has been having fun putting hair gel in his hair and combing and styling it :-)

The kids and I are enjoying summer break so far. We went to Prairie du Chien on Thursday thru Monday this week. It was nice to have all of my family home to celebrate my Mom & Dad's 50th wedding anniversary. And we all enjoyed a Father's Day brunch on Sunday. The weather was nice enough for the kids to swim and relax and have fun with their cousins. We sure do feel lucky to have a place to "get away" to whenever we want. It is a 3 1/2 hour drive and makes for a nice mini vacation.

Happy Father's Day Clint!! The kids and I are so lucky to have you. You are the best dad/father. The kids got Clint a hammock for the backyard. Now hopefully the mosquitoes will settle down so he can enjoy it.

At clinic yesterday we were given 5 tickets to tomorrow afternoon's Milwaukee Brewers game. Sounds like it will be a fun afternoon :-)

This afternoon we are going to see Shrek 2.

Thanks for checking in on us.

Happy Summer!

Jan

Tuesday, June 15, 2004 5:29 PM CDT

Another week of treatment behind us. Colin is doing a basketball camp this week. I picked him up a 1/2 hour early so we could head out to Children's. He had a spinal tap with chemo this afternoon. Everything went smoothly. The anesthesiologist was kind enough to let Colin assist with pushing in the propofal (the drug that makes him sleepy). He likes to do it himself -- he started falling asleep with a smile on his face halfway into it and let them finish it off. What a kid. They sure do love him there :) After we left Children's, we went to the mall for lunch. Tonight he is complaining of a headache and not feeling that great. He is resting on the couch.

Thank you Megan for watching the girls today. They enjoyed all the fun things you did with them -- lunch at Bruegger's, the library and the game. THANKS!!

Jan

Thursday, June 10, 2004 11:23 PM CDT

This week is Colin's low platelet week -- and it was obvious by the bruising on his arms and legs, that he would be going in for transfusions. On Monday they were 22,000. They gave us the option of going in that day or waiting until Tuesday for a transfusion. We decided to get it done on Monday. This morning we went for labs again and they came back at 14,000. This afternoon we were back at Children's for another transfusion.

Tomorrow is the final day of school. They will go to mass at 8:30 a.m., then get their report cards, and be dismissed at 9:45. Hard to believe another year of school is behind them.

Thursday, June 3, 2004 10:53 PM CDT

Colin's in-patient ARA-C chemo went very well on Tuesday. I thought things might be a bit hectic in clinic the day after a holiday. We made our appt for afternoon and were happy to see that things were running on schedule. We were in our room in the HOT unit before 5 p.m. 25 hours later we were discharged and on our way home.

Colin had a rough night last night. He did not feel very well and was having pain in his chest and tummy. We also had to wake him up at 11 p.m.; 1 a.m. and 5 a.m. for meds and eyedrops. Imagine having to wake up in the middle of the night and have someone putting drops in your eyes. The Ara-C can cause damage to the eyes, so they give these drops around the clock while he is inpatient, and then the day after. This morning he was still feeling pretty cruddy -- he stayed home from school and rested. In many ways the chemo is taking its toll on Colin. This is such a long, tough protocol. We are excited about the fact that he has just two more Ara-C inpatient stays. And less than 4 months of treatment left. Hard to believe! Tonight he is back on the GCSF shots for the next 10 nights. With each day passing and every shot, pill, etc., we are one step closer to the end of this treatment. One day at a time . . .

Thank you Megan for taking care of the girls this week. And thank you Mary for the use of your dryer on Monday/Tuesday. We were out of town for Memorial Day weekend and came home on Monday to a broken dryer! It is now fixed and I'm once again attempting to catch up.

Thank you Grandma Barb for making cookies for the HOT unit. I put them in the family kitchen and they were a hit.

The kids are excited that tomorrow is their last day of wearing a uniform to school. Next week is casual dress and also the last week of school. We are ready for summer. Hopefully it will start to warm up here in Wisconsin!

Jan

Tuesday, May 25, 2004 9:21 PM CDT

Today was the start of another cycle. Cycle 14, week 1. We were in clinic for a check-up and a quick push of Vincristine into his port. We were in and out of clinic in record time -- 1 hour. Tonight Colin started the VP16 pills (the big "hot dog" pills). He was feeling pretty worn out early this evening, so headed off to bed. His allergies have kicked in and seem to be adding to his not feeling great. Next week we are scheduled to go in-patient on the HOT Unit for 24 hour Ara-C.

It is almost the end of the school year, which brings with it a lot of activities. Tomorrow night the Boyscouts are launching rockets. Thursday night Colin's soccer team has a make-up game. We have had so much rain lately, that it has cancelled games and practices throughout the season. Friday the kids have mini-olympics at school. Clint will be home Friday afternoon. He has been doing a two week Army Reserve training at Ft. McCoy. He was home for the weekend, and went back on Sunday evening. We are glad that it is "only" two weeks. He is missed very much by all of us when he is gone.

Saturday we will celebrate with my niece Megan on her high school graduation. Congratulations Megan! And congratulations Molly on your high school graduation! I'm starting to feel my age watching so many of my nieces and nephews head off to college and beyond. (I will be going to my 20th high school reunion this summer -- at times it feels like it was just yesterday. Ha ha.)

While I'm at it -- CONGRATULATIONS to my parents on their 50th wedding anniversary which is today. I wish we were there to celebrate. We are looking forward to the celebration in June with the WHOLE family.

Thanks MB for spending the afternoon with Emma.

Love -- Jan

Wednesday, May 19, 2004 10:49 AM CDT

We are having a good week. This is Colin's oral chemo week, which means that he does not have to go out to Children's for an appt. We like this week :) Yesterday he did his 24 hours of Methotrexate. I had to give him his second dose at 10 a.m., which was the same time that he was going to be on a fieldtrip. I went as a chaperone so I could give him his meds. We went to a nursing home in Mequon. The 2nd graders have gone there a few times over the past year, but this was Colin's first time going. The kids played quite a few games of bingo with the residents. And then they visited with some of the residents who did not play bingo. The kids also made cards for the residents. It was a nice trip to go on.

Jan

Tuesday, May 11, 2004 8:20 PM CDT

WEEK 4, CYCLE 13

Another Tuesday appointment is complete. Today's chemo was cyclophosphamide with mesna. Same routine -- prehydration fluids, then 1 hour of chemo and posthydration. We had a good day together. Colin started back on the dreaded Prednisone today. Because of his weight, they have increased his dosage, he is now getting 45mg three times a day. That is a lot of prednisone for a little kid. He is on it for 5 days. The prednisone tends to make him feel aggitated, very hungry, moody and overall blah. I went grocery shopping yesterday to stock up on some of the favorite foods, and am already finding empty wrappers/boxes, etc.! Only 5 days, 5 days, 5 days. I will keep reminding myself of that fact :-)

All 5 of us sat down tonight with the calendar and figured out how close we are to the end of treatment. From our calculations, it looks like he will have three more complete cycles of treatment. We are all thinking that that sounds really good.


Jan

Monday, May 10, 2004 8:20 AM CDT

Mother's Day 2004
(Colin's card that he made me)

My Mom

I love my mom more than a thousand dollars. My mom looks very good. She is nice and skinny. She has a good smile. I like how her hair is fluffy. My mom is funny because she tells funny jokes. She brings me to the hospital for treatments. Once when I was sick she stayed by me all day. My mom works so hard that she works harder than my dad. When I'm hungry, she makes dinner for us. She taught me how to ride my bike when I fell off. I like it when she says "You drive me up a wall!" If I had enough money, I would buy my mom a car that is an RSX car that's only for moms. I'm glad I got to be my mom's child.

Colin

Tuesday, May 4, 2004 8:56 PM CDT

What an eventful week we have had. Thankfully, Colin felt good enough throughout all activities. Friday night was the school variety show. It was so cute. Colin's class sang "The Candy Man". He was dressed as a Hot Tamale. Kelly's class performed "Consider Yourself" from Oliver. The show was great. I'm glad the kids are given the opportunity to perform on stage at such a young age.

Sunday was First Communion for Colin and his classmates. The ceremony was beautiful. Colin had a good day. Clint and I were so happy for him that he could be there to celebrate his special day with his peers. Colin's nurse Kathy even came to the mass to see Colin. He was so excited to see her. After the mass, we had a party at our house. We enjoyed the day with grandparents and aunts and cousins. Thanks to everyone who made the day special for Colin!

Monday morning Colin, Emma and I went to the lab for his blood draw. The 2nd grade class did not have school on Monday. In the afternoon there was a bowling/pizza party at Echo Bowl for Colin's class. Lots of fun.

Labs came back yesterday. His platelets were 59,000 which was just high enough to go ahead with his appointment today. They like them to be above 50,000 for a spinal tap. The rest of his counts were quite high due to the GCSF shots. After 11 nights of the shots, we were able to stop them. We are always happy to do that.

This morning Colin went to school for a few hours. Then we headed out to Children's for his spinal tap. Day surgery was running a bit behind, so it took until about 1:45 before he finally got in for his procedure. As usual, by the time he woke up from recovery, he was ready to EAT. It is such a long day when you can't have your first meal of the day until after 3 p.m. He has more than made up for it since that time. :-)

Finally, tonight was May Crowning at St. Monica's. Even after having a spinal tap just a few hours before, Colin was ready to go. Personally, I would imagine I would be ready to go home and lay down after having chemo put into my spine. But in true Colin style, he didn't even consider that option. The 2nd graders wore their First Communion outfits. And tonight a group photo of all of the kids in their dress clothes was taken outside on the steps in front of church. They all looked so nice. After May Crowning, Clint and Colin headed over to Kopp's for a hot fudge sundae that was promised to Colin. The girls and I went to Dairy Queen for a treat.

We made it through a busy week! With the end of the school year approaching quickly, the days seem to be flying by. I think tomorrow Emma and I will be ready for a relaxing morning after the kids leave for school. No plans are being made :)

Thank you for all the nice messages in Colin's guestbook.

Jan and family

Thursday, April 29, 2004 9:21 PM CDT

Today's labs came back again with low platelets -- 7,000. We were back at Children's this afternoon for a transfusion.

Thanks MB and Meg for helping with the girls this afternoon. And thanks Peg for helping me out here at home this morning.

Jan

Monday, April 26, 2004 9:20 PM CDT

Clint and Colin were at the lab at 7:30 this morning to check his counts. I got a call from the clinic later this morning that his platelets were 14,000. We headed out to Children's at Noon and waited, waited and did some more waiting for the platelets to arrive. Something happened to the first batch of platelets that they had ready for him, so they had to reorder. We had to wait for them to arrive from downtown. Finally at 3 he got his transfusion.

We will check counts again on Thursday. We have a busy weekend coming up. Variety show is on Friday night. Sunday is First Communion for Colin. We are praying for good counts and that Colin will feel well enough to participate in all events this weekend.

Jan

Wednesday, April 21, 2004 11:09 PM CDT

We are home :) Colin's in-patient stay went really well. He was full of energy and had no problems eating, and no complaints of feeling sick. Usually when he goes in for his Ara-C he also gets Doxorubicin. This is the first time he has not gotten the Doxo. I'm hoping that his reason for feeling so much better this time is because he didn't get the doxo. The oncologist and Colin's care partner agreed that was probably why he was having an easier time with the chemo. This afternoon we had to go to the Heart Center for an echocardiogram. His heart looks good. What a relief! We are so very greatful that Colin is tolerating his treatment as well as he has been and he is in remission. Unfortunately that is not the case for all of the kids that we know at CHOW. It is hard not to get attached to some of the kids we see on a weekly basis. Our little friend Caitlyn is one that needs lots of prayers. I hope that she can get the right treatment that she needs to help her win her battle with leukemia. She is such a smart, brave, happy little 5 yo girl.

We made a BIG discovery this morning. We knew that there was a place at Froedtert Hopsital (which is attached to Children's) that has Starbuck's coffee. This morning I really needed my coffee, so we decided to walk over there. It is a long walk (indoors), but we had plenty of time. When we got there we discovered they now sell Krispy Kreme donuts (good thing we got our walk in beforehand)! Boy were we happy. We picked out a dozen of assorted donuts and took them back to the HOT unit. We put the box in the family kitchen area to share with other families and Colin's nurse. I think next time we better pick up more than a dozen.

Tomorrow night Colin will start the G-CSF shots to help his counts recover. It will be interesting to see what his counts do since he did not get the Doxo. We know they will still go down, but we are hoping that perhaps he won't need as many platelet transfusions. Time will tell.

Thanks so much to my parents for coming here to stay with Kelly and Emma while Colin and I were in-patient. Clint is out of town until Friday. It is during times like this that we realize just how very important family is! We are so very greatful for all the members of our family who are helping us get through this time. THANK YOU!!!!

Jan

The kids had a great time in the Dells. We even had 80 degrees on Friday. We were able to go mini golfing and ride the bumper boats outdoors. Not bad for Wisconsin in April!!

Tuesday, April 13, 2004 7:09 PM CDT

We are enjoying Spring Break here this week. The kids are off of school all week.

We had a nice Easter brunch at Grandma L's house on Sunday. The kids really got a kick out of this website of the Easter Bunny Rap -- Emma can't stop laughing whenever she watches it: CLICK HERE TO SEE THE EASTER BUNNY RAP

Last week Colin did his oral Methotrexate and 6MP pills. We didn't have a scheduled clinic appt. However he was complaining of blurred vision at school last week, so we called clinic and they had us bring him out. The onc did not see anything usual, and Colin wasn't complaining of headaches or any other symptoms. We did schedule an appointment with the eye clinic. He had that appt yesterday. As of yesterday he was no longer complaining of the blurred vision. The eye exam went well and they felt there were no problems. He is slightly nearsighted, but not enough to need glasses. They did not feel it was necessary to take more photos of his eyes (which they did 6 months ago). We are relieved to know there doesn't seem to be a problem. We aren't really sure what caused the blurred vision, however it does seem to me like it may be related to the Prednisone.

WEEK 1 OF CYCLE 13:
This morning Colin, Emma and I were back at clinic for his chemo. It was a quick appointment -- a push of Vincristine into his port by his nurse Kathy. And a routine check-up with Margaret his nurse practitioner. And we were on our way home. Tomorrow night he will start his VP16 (Etoposide) pills for 5 nights. Next week he is in-patient for 24 hour Ara-C.

This Thursday the kids and I are joining my sister Peggy and her 2 boys for a getaway to Wisconsin Dells. We are staying at a water park resort. The kids are excited to be going with their cousins.

Gotta go -- Colin and Kelly want me to go out and shoot some hoops with them before it gets dark out.

******************************
Updated later Tuesday night (or maybe I should admit . . . early Wednesday morning)

I finally took the time to outline Colin's 5 week cycle of drugs above. That way I won't have to repeat the links every time I do an update. Today's Vincristine was week 1 of Cycle 13. Typing all that out and reading the links reminds me of all the CRUD he has to go through!! And it amazes me how resilient Colin is and never complains about taking any of his medicine. He can be pretty darned stubborn and crabby at times (we usually let him blame that on the prednisone), but still he does what needs to be done to get through this treatment. We are so very greatful for chemotherapy and what it has done for Colin. Yet we will be so glad when he can end his treatment and feel good all the time. We look forward to that day with hope. And for now we take things one day at a time.

Jan

Friday, April 2, 2004

Thank you for all of the nice messages in Colin's guestbook on his b-day. We had lots of fun celebrating the b-days this year.

Yesterday Colin and I were back at clinic for his chemo -- cyclophosphamide w/Mesna. On Wed. night we made a batch of Scotcharoo's (peanut butter rice krispy treats with chocolate chips/butterscotch chips melted on top) for his b-day treat at clinic. We stopped at the Skywalk coffee/hot chocolate cart on the way up to clinic and gave our friend Denise a b-day treat. And she gave Colin a hot chocolate. As we were making our way to the clinc I was reminded at how Colin has become quite the fixture at Children's Hospital. We see many of the same people walking through the halls, working at the information desks, the deli, the giftshop, etc. And everyone is so friendly. It is quite a place!

He wasn't quite as cooperative yesterday morning about drinking fluids before we got to clinic. So his first urine test came back not ready for chemo. They hooked up the IV fluids to get him hydrated. It didn't take very long and he was ready for his chemo. They hung his chemo, and we headed down to the cafeteria for lunch. The day went pretty quickly, Colin worked on his homework, played some PS2, read his book, and a visit to the giftshop. He thought it would be fun to buy a mouse in the giftshop and put it in the pan of Scotcharoo's as an April Fools joke. Back at clinic, we waited and watched to see who would find it :-)

Colin is back on Prednisone this week. This morning for breakfast he asked me if I would mind making him some popcorn shrimp! Good thing we had some in the freezer.

Thank you Cathy C. for watching Emma yesterday while we were at the clinic. She had so much fun. This morning she asked me if I would drop her off at Colleen's house to play again.

Thanks for checking in. Have a good weekend.

Jan and family

Tuesday, March 30, 2004 9:15 AM CST

Happy 8th Birthday Colin!! Colin was born at 2:52 p.m. on March 30, 1996. He was 23 inches long, weighing 11 lbs 4 oz! He was 2 ounces less than his sister Kelly :)

We made Colin's chemo appointment this week for Thursday so he wouldn't have to feel yucky on his birthday. He is at school today. We made cupcakes for his class treat. I'm signed up for lunch room duty at school today. Colin's dinner request for tonight: Chicken Enchiladas and brownie sundaes with Kopps' vanilla custard.

I'm having fun with my scanner. Here are some pics of Colin when he was a few months old. Enjoy.






Happy Birthday Bud -- we love you so much.

Mom, Dad, Kelly & Emma

Thursday, March 25, 2004 9:33 PM CST

We are celebrating two birthdays this month. Clint's birthday is tomorrow, and Colin will be 8 on March 30th (next Tuesday). Clint and Colin have always enjoyed having their birthdays so close together. Lots of b-day cake and fun :) I found this picture of Clint and Colin from 1998 when Colin turned 2 years old. It was his first b-day after being diagnosed with ALL. What a long journey this has been! Happy birthday to the two most important guys in this family!!



Yesterday's labs showed that Colin's platelets were back up to 114,000. We went in today for his spinal tap. It was a long morning for Colin. The spinal was at 12:30. By the time he came out of recovery and woke up, it was 2 p.m. He can't eat before the spinal, so he was a very hungry boy when he woke up. His nurse Melissa had ordered him some mozzarella sticks and french fries and had those ready when he woke up. Kelly came to the appointment with us. She doesn't get the chance to do that very often. While Colin was sleeping, she taught me how to play Frogger on the Playstation. We laughed a lot and enjoyed ourselves.

Our next appt is April 1st. Is it just me, or are these months flying by?! Spring is here and we are all enjoying the fresh air and warmer temps.

Have a good weekend.

Jan and family

Sunday, March 21, 2004 7:13 PM CST

Things are going well this week. We took Colin in for labs on Friday morning -- platelets came back at 24,000. Since he wasn't have any bleeding or other symptoms, it was decided that he would not need a transfusion. This morning after church the whole family headed out to Children's Hospital's lab for another blood draw. By the time we got back home there was a message on the answering machine that they were down to 16,000. They gave us the choice of bringing him back out today or going in tomorrow for a transfusion. We asked if it would be okay to bring Colin out after the Pinewood Derby which was this afternoon. No problem. All 5 of us went to the derby at St. Monica's. Colin's car was a little bit slow on three of the runs (placed 4th out of 4 on each of those) but he did have one run where he placed 2nd out of 4. All the kids went home with a trophy.

After the derby, Clint and Colin headed out to Childrens HOT unit for his transfusion. They are still there but should be home shortly. I'm glad to have it done tonight, so he can go to school this week and not have to miss it because of appts. The kids are off of school on Thurs/Fri this week.

Colin was scheduled for a spinal tomorrow morning, but that will have to be rescheduled to later this week. His platelets need to be over 50,000 for the tap. The labs today showed that the rest of Colin's counts have gone up enough so he can stop the GCSF shots. YAY!!

Here is a bit of trivia for you. A question on Kelly's geography homework. What city in the British Isles has 58 letters in its name? Here you go: Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch

Good thing we have the internet for such questions! If you are interested in the history behind this name -- and how to pronounce it, here you go: CITY WITH 58 LETTERS Yikes -- good thing we don't have to address mail to that city!! :-)

Jan

Wednesday, March 17, 2004 6:01 PM CST

Happy St. Patrick's Day!!

The following is one of the many Irish blessings I read today:

"Count your blessings instead of your crosses;
Count your gains instead of your losses.

Count your joys instead of your woes;
Count your friends instead of your foes.

Count your smiles instead of your tears;
Count your courage instead of your fears.

Count your full years instead of your lean;
Count your kind deeds instead of your mean.

Count your health instead of your wealth;
Love your neighbor as much as yourself."


We started our morning off with green orange juice and Lucky Charms :) The kids were treated to Irish Dancing by the Trinity Irish Dancers at school this morning.

Colin's labs today came back with 12,000 platelets, so this afternoon we headed out for a transfusion. The visit went well. We will check counts again on Friday.

I read that 750 people came to the bone marrow drive last weekend!! What a success.

"May you always walk in sunshine.
May you never want for more.
May Irish angels rest their wings right beside your door."

Happy St. Pat's from the O'Laskowskis :)

Friday, March 12, 2004 9:39 AM CST

Colin's inpatient stay went well on Tuesday. Usually the ARA-C makes him feel really cruddy. But this time he didn't have any problems. Along with the Ara-C, he got his last dose of Doxorubicin. He has now reached the lifetime maximum of that drug. Doxorubicin is the drug that can cause heart problems. Colin's heart will have to be monitored for years to come. He will also have to avoid heavy weight lifting and physical activity that would put stress on the heart. This link explains the long term affects of the Doxo: Late Effects of Doxo. We are greatful for the chemotherapy that has kept Colin's leukemia in remission. It is sometimes scarey to think of the side effects and long term effects that he will be dealing with for years to come. For now our main focus is keeping Colin in remission.

His Ara-C ended at 6:15 p.m. on Wednesday. We stuck around for an extra hour to monitor his vitals to make sure he was doing ok. His port was deaccessed and we were on our way home at 7:30. Colin wasn't feeling to great when he woke up yesterday morning, so he stayed home from school. But after lunch he asked me if he could go, so he went for the last 2 hours of the day. Last night we started the G-CSF shots, which will help boost his counts back up.

We are so greatful for the excellent quality of care at Children's Hospital of Wisconsin. The nurses and child life specialists go above and beyond to make the kids feel comfortable in the hospital setting.

This article about the bone marrow drive was in Sunday's Milwaukee Journal/Sentinel: Bone Marrow Drive

Thanks MB for helping out with Emma and Kelly this week!

Jan

Friday, March 5, 2004 2:00 PM CST

Updated 3/8/04 -- if you have questions about the bone marrow registry and what is involved, you can click on this site for answers to any questions you may have: JOINING THE BONE MARROW REGISTRY As noted below, if you register at the bone marrow drive this weekend, there is no charge (normally there is a testing fee).

I had a few people ask me this weekend if they could be tested to see if they match Colin. Colin is currently going through chemotherapy treatment. He is in remission and doing well with the chemo. He does not need a bone marrow transplant. Thank you for asking. We are asking that you still go and get tested and have your name put on the registry. The best gift you could give is the gift of life to someone who is in need of a bone marrow transplant.

Clint was in Pittsburgh last week for Army reserves. The kids and I went to Prairie du Chien for the weekend. We had a nice time with Grandpa and Grandma. :)

Clint took Colin this morning for his labs before school. Tomorrow he is scheduled to go in-patient for his 24 hour Ara-C.

Jan

--------------------------

Here is the info on next week's bone marrow drive. When Colin relapsed, we were all tested to see if we were a match for him. Unfortunately none of us are a match. Also the bone marrow registry did not come up with much in the way of matches. Wouldn't it be wonderful to put yourself on the registry and possibly be a match for a child or adult in need of a transplant.

Tuesday, March 2, 2004 9:30 PM CST

Wow -- March, 2004! Hard to believe another month is behind us. 7 more months of treatment to go.

Today was a very quick appt day. Colin went to school until I picked him up at 1:30 to go to Children's for his appt. Our first stop was the skywalk deli for an after school snack. Then we headed to the Herma Heart Center for an Echocardiogram. His heart is functioning well and everything looks good. After the Echo we went to the clinic and checked in at the desk. Then to the vitals room for a quick weigh-in, height measurement, blood pressure and temp check. After that Colin's nurse practitioner Margaret did a check-up to make sure things were going well. And finally his nurse Kathy accessed his port, gave him his chemo, Vincristine , deaccessed him and we were done. I made an appt for next week. We were on our way home by 3 p.m.! We are so lucky to live so close to Children's Hospital of Wisconsin. It sure makes things easier for us. Tonight Colin started a 5 day dose of Etoposide/VP16

Colin has been going to school and feeling well the past 2 weeks. He is quite the trooper. Kelly and Emma are also doing well. We are all ready for warm temps, flowers, sunshine, bike rides and walks to the park.

I've been told that there is going to be a Bone Marrow drive at Holy Family School in Whitefish Bay on March 13. I don't know the details yet, but will be putting them here when I know more.

If you could add our friend Colleen to your prayers this week. She is getting ready for a bone marrow transplant. She is also turning 8 years old this week. Happy Birthday Colleen :)

Thanks for checking in.

Jan

Wednesday, February 25, 2004 9:51 PM CST

Things are going well this week. The kids are feeling healthy and have been going to school. The sun has been out and the snow is melting. Little signs that spring will be here soon (we hope!!). Emma and I even got out for a bike ride/walk this morning.

Colin's labs on Monday looked good. He did his 40 oral Methotrexate pills yesterday. And started a 7 day dose of 6MP . Tomorrow morning I will wake him at 4 a.m. for a Leucovorin pill. That is the drug that goes in and "chases" the Methotrexate out of his system. He will take a 2nd dose at 4 p.m. (In case you are interested, you can click on the blue links for info on the meds Colin takes)

All is going well and as always, we are taking things one day at a time.

Thanks for checking in!

Jan

Friday, February 20, 2004 8:53 AM CST

Things are going ok this week. Colin and I were at clinic on Tuesday morning for his chemo: Prehydration (fluids through his port) and then Cyclophosphamide with Mesna Things went well and we were on our way home by 1:45. He also started on 5 days of Prednisone (120 mg a day). Colin wasn't feeling good Tuesday evening/Wednesday most of the day. Yesterday and today he is doing better. His favorite prednisone food request this week is homemade pancakes. We got up before school and made them yesterday and this morning. He has also asked me to make some banana bread which I am doing this morning.

Kelly has been at home the past 2 days not feeling well. It has been a long week. We are very ready for winter to be over and spring/summer to arrive. I've stuck to my New Year's goal of getting on the treadmill more often. It will be nice to get outdoors again soon and run in the fresh air.

Last night Mary, Katie and I went to the movie 50 First Dates. Cute movie, lots of laughs. I'm so lucky to have these frequent girls nights out with my sister and nieces. :)

Next week is oral Methotrexate week. The kids also have off of school on Monday. Looking forward to the long weekend.

Jan

Friday, February 20, 2004 8:53 AM CST

Things are going ok this week. Colin and I were at clinic on Tuesday morning for his chemo: Prehydration (fluids through his port) and then Cyclophosphamide with Mesna Things went well and we were on our way home by 1:45. He also started on 5 days of Prednisone (120 mg a day). Colin wasn't feeling good Tuesday evening/Wednesday most of the day. Yesterday and today he is doing better. His favorite prednisone food request this week is homemade pancakes. We got up before school and made them yesterday and this morning. He has also asked me to make some banana bread which I am doing this morning.

Kelly has been at home the past 2 days not feeling well. It has been a long week. We are very ready for winter to be over and spring/summer to arrive. I've stuck to my New Year's goal of getting on the treadmill more often. It will be nice to get outdoors again soon and run in the fresh air.

Last night Mary, Katie and I went to the movie 50 First Dates. Cute movie, lots of laughs. I'm so lucky to have these frequent girls nights out with my sister and nieces. :)

Next week is oral Methotrexate week. The kids also have off of school on Monday. Looking forward to the long weekend.

Jan

Tuesday, February 10, 2004 11:11 PM CST

Colin and I spent most of the day at Children's today. We had to be to the lab at 9:30 a.m. for a blood draw. It always amazes me how none of this stuff seems to phase Colin -- this is his 4th time of having blood drawn from his arm in the past 7 days. No complaints about it at all! I guess having started this at 19 months of age, he thinks it is all pretty normal. After labs we went to the clinic, got his wristband, weight and height measurements, temp and blood pressure stats. And yet another hat from the "treasure" box. He has quite the hat collection these days.

The labs came back with his platelets at 56,000 good enough to go ahead with the spinal tap. They accessed his port and gave him IV Zofran (anti-nausea med). The day surgery staff were ready for us by 11:45 (ahead of schedule!). We headed down to the 4th floor and filled out the paperwork. I always go into the room with Colin until he falls asleep. They give him a drug called Propofal which makes him fall asleep quickly. He was able to start pushing the drug (with the help of the anesthesiologist) into his port and within 30 seconds his eyes were shutting and he was out. Amazing! I headed out to the waiting room and about 30-40 minutes later was called back into the recovery area. After Colin woke up, they wheeled him back up to the clinic for him to fully wake up.

Colin was very hungry when he woke up. He is a growing boy, and having to go all morning without food is torture! We had stopped at Bruegger's Bagels on our way to the hospital this morning, so I had a meal ready for him when he was up enough to eat. He had a plain bagel with strawberry cream cheese and a lemonade :)

He was complaining of feeling dizzy after the spinal tap. His blood pressure was fine, and no temp. They told me to have him lay down when we got home and drink lots of fluids. He seemed to feel better as the night went on.

Yet another week behind us!

Jan

Monday, February 9, 2004 10:37 AM CST

I took Colin to Children's yesterday for his blood draw. All of his numbers came back good, except for the platelets which are 33,000. They have gone up though, so he doesn't need another transfusion. The platelets do need to be at least 50,000 for him to have his spinal tap tomorrow. So we will have labs drawn again tomorrow morning to see if they are above 50,000. And then he will have his LP at Noon.

Jan

Friday, February 6, 2004 1:28 AM CST

Clint took Colin for his labs this morning. Got the call from Children's that his platelets were 9,000. We went out at Noon for a transfusion. We will go to the lab at Children's on Sunday to see if they are high enough for his chemo (spinal tap) on Tuesday.

We are hoping for higher numbers by Sunday. He is getting the nightly G-CSF shots that make his counts go up. They usually kick in after 10 nights of them, which will be Saturday.

Jan

Tuesday, February 3, 2004 12:19 AM CST

Things are going well here. Last week Tuesday Colin was admitted to the HOT unit for his 24 hours of Ara-C and Doxorubicin chemotherapy. The Ara-c, as usual, made him feel pretty yucky all day Wednesday. He ended up with a fever and not feeling good, so they decided to keep him in another night to make sure he was ok, and to give additional fluids. By Thursday morning, he was feeling much better and was discharged. Clint stayed in-patient with him, which was a nice change of routine for all of us.

This week is his typical low platelet week. Yesterday his platelets were 11,000, so we had to go out for a transfusion. He was supposed to get 5 units, but was only able to get 4 due to a shortage of platelets at the Blood Center. Donating platelets is a more time consuming procedure. I hope to start doing that after we are finished with treatment. I should have more time to give back at that point. We are so thankful to those who donate platelets!!

We will most likely be back to Children's on Thursday for another transfusion.

Tomorrow we are celebrating Kelly's 10th birthday!!! HAPPY BIRTHDAY KELLY. We love you :)

Jan

Monday, January 26, 2004 9:27 PM CST

"God Has Chosen Me to be Brave" . . .

I wanted to share/journal our day today.

It is Catholic School's week this week. The kids' school is doing lots of fun activities this week, including the carnival on Friday :) It seems like I was just writing about last year's carnival.

Today they kicked off the week with an assembly in the gym with all of the children and teachers. As part of the assembly, they asked one child from each classroom to do a part -- they had to shout out "GOD HAS CHOSEN ME TO BE . . ." Colin's part was "GOD HAS CHOSEN ME TO BE BRAVE". So very appropriate. Clint, Emma and I went to watch (and Kelly was there with her class). He did a great job. We were very proud of him.

Yes Colin, God has chosen you to be brave. Each and every day we watch as you endure chemotherapy, weekly blood draws, loads of pills, shots, spinal taps, and blood and platelet transfusions. You happen to be the bravest person I know or ever will know. THANK you for fighting this illness with everything you have. We love you!

Mom and Dad

Monday, January 19, 2004 11:15 PM CST

The kids had today off of school for Martin Luther King Day. So I scheduled Colin's clinic appt for today. We first went to the lab to have his blood draw. Then we headed to the Herma Heart Center for an echocardiogram. His heart looks real good. After his echo, we went to the clinic for his chemo -- a push of Vincristine into his port. We had to wait a bit for his lab results to come back before they could give him his chemo. Labs looks good: WBC: 3.8; Hemoglobin: 12.5; Platelets 156,000 and ANC 2,300. Kathy accessed his port and gave him his vincristine and deaccessed him so we could go home. Nice quick appt.

One thing that Colin loves to do is to take apart electronic things. He pretty much takes apart ALL of his toys and comes up with different ways to make them work :-) Today his nurse Kathy brought in an old stereo for him to take home and take apart. He had fun working on that when we got home.

Today when we got home we had visitors: Grandma & Grandpa H., Fr. Bill and Uncle Bob & Aunt Agnes. It was great seeing everyone :) Thanks for waiting for us to get home!

Clint and the kids attempted sledding on Sunday, but it was way too cold. They did the hill twice and that was enough. It definately feels like winter here.

Jan

Tuesday, January 13, 2004 7:08 PM CST

No clinic appointment this week. Colin's labs from yesterday: WBC: 5.8, Hemoglobin: 14, Platelets 220,000 and ANC: 4,060. (nice and high from the steroids he was on last week). He is 3/4 of the way through his oral methotrexate today: 10 pills at 4 a.m.; 10 at 10 a.m.; 10 at 4 p.m. and he will take his last 10 at 10 p.m. tonight. He is also on 6MP nightly for the next 7 nights.

I read this article today on my yahoo news and thought I would put a link here. Another reminder of how important it is to donate blood: BLOOD BANK SHORTAGES

It snowed last week, so this past weekend the kids and I (and their cousin Brendan) went sledding. We had a blast! Got quite the workout walking up that hill MANY times on Saturday and Sunday :) Emma and I were partners and laughed a lot as we were flying down the hill. So nice to go to a place like the local park, have a wonderful time and hear so many kids laughing and having fun -- AND not having to shell out money to do it. Seems to be a rare occurrence these days.

We also watched the Packer's game on Sunday with Mary, Tim and family. We brought Colin's lucky autographed Brett Favre ball (it seemed to work last week!) Well, I'm sure by now everyone knows the result of that game. BUMMER!!

Jan

Tuesday, January 6, 2004 8:44 PM CST

Happy New Year!! Clint, Kelly, Colin and I all made it until Midnight on New Year's Eve. We played Yahtzee, watched movies and ate appetizers. We hope that 2004 is a good year for everyone.

Today Colin and I were back at clinic. I definately needed the break and was so glad Clint could take the past 2 weeks off of work to be at home. We enjoyed the long holiday break. And I do believe by yesterday everyone was ready to get back to their normal schedules. I know I was. I'm working on my New Year's resolutions, which includes getting back to a more consistent running schedule. Running is a great stress reliever for me. I'd like to get back to running in some 5Ks and 10Ks and my long term goal is to do a Leukemia Society Team in Training Marathon when Colin is finished with his treatment. Okay, now that I have typed that out, I better getting moving!

Colin's counts were: WBC: 2.1; HGB 10.0; Platelets 235,000 and ANC 1,113. This morning he was at clinic for Cyclophosphamide with Mesna which is a drug that helps protect the bladder. Cyc is pretty harsh on the bladder, so the patient needs to be hydrated well before receiving it. As we have done in the past, Colin started his hydration when he got up this morning. He had a big glass of water with b-fast, a bottled water on the way to the hospital, and a large hot chocolate that we picked up at the skywalk cofee cart. By the time we got to clinic, he headed to the bathroom and sure enough, the dip test came back that he was at the level he needed to be. Nice job Colin! Kathy gave him some Zofran (anti nausea) med into his port and came back awhile later with his chemo. His chemo ran for an hour and then he had to do 2 hours of post-hydration.

Today's appointment flew by. I guess that after going to the clinic every week for the past 16 months it is fair to say that we have gotten to know quite a few families. Today we ran into Katie and her mom. Katie is now off treatment, but was there for a checkup. She looks great. It was nice seeing them. We had lunch with them in the cafeteria. After lunch Colin and I went to the HOT (inpatient) unit to meet a family whose daughter Colleen recently relapsed with ALL. She has now started the same treatment that Colin is going through. Her mom Peggy and I have exchanged some emails, but this is the first time we have met. It was nice to finally meet and give each other a hug. Colleen and Colin are both in 2nd grade. After talking for awhile, we walked with Colleen and her Mom down to the hospital school room so Colleen could do her homework. Colin and I then went back to the clinic so he could get deaccessed to go home.

I also had a chance to talk to my friend Sharon. We met last year while our kids were inpatient, and we see each other almost every week at clinic. Her little girl Caitlyn needs lots of prayers right now.

We are back home and Colin is on 5 days of the steroid Prednisone. The munchies have hit big time. Today's cravings: bananas (yay, something healthy), cheese balls, chex mix, ham, cashews and a baked potato with sour cream and butter for dinner. He was so excited when I read off tomorrow's school lunch menu: corndog on a stick!! :-)

Thanks for sticking with us the past 16 months. 9 more months of treatment to go.

Jan

Tuesday, December 30, 2003 10:13 PM CST

Hello from Clint (Colin's Dad). I've had vacation from work for the past week. This means I've been able to take Colin for his regular Tuesday treatments last week (12/23) and this week (12/30)... and Jan was able to take a much deserved break. Last week (12/23), Colin's blood counts were not high enough for his treatment. Instead, it was delayed one week until today (12/30).

Colin and I started the morning -- at home -- tinkering with an old computer printer. Colin is an expert at taking things apart, even complex computer stuff (see picture here) . We had a great time looking for motors and gears, and talking about how things work. It seems there are few things that bring as much joy to Colin as connecting an electric motor to a battery and seeing it move :-)

Colin's treatment today consisted of a Spinal Tap (a "LP") and an intrathecal "triple cocktail" (three meds delivered during his LP). Because this can be very painful, Colin now receives a general anesthesia and is completely asleep -- and remembers virtually nothing -- during the procedure. That's the good news. The bad news is, as a result, Colin can not eat or drink for many hours before his LP.

When it was time, we left home and arrived at the clinic at 11am. Kathy (one of Colin's favorite nurses), accessed his port and got him ready for the LP. We played a few video games, and before we knew it, it was time for his LP. I was able to stay with Colin in the procedure room until he fell asleep from the anesthesia. I did a bit of reading, but before I knew it, Colin was in the recovery room. He woke about an hour later... very hungry (and ate a bunch of crackers while his nurse got him ready to leave).

Overall, it was a very routine treatment day for Colin... until we got to the parking structure as we were leaving. Somehow, a light was left on in my Jeep and the battery was completely dead! Fortunately, Children's Hospital has a wonderful security staff that was able to provide us a jump, and we were on our way.

Another thing that was wonderful about today is we got see and talk with several of our friends (old and new; children and parents) at the clinic. It seems Christmas was good to most, and all are looking forward to the New Year.

When we got home, Colin showed few signs of having a Spinal Tap. Before we knew it, he and his sisters were busy with their new video game (delivered last week by Santa).

It has been great for me to be on vacation this week... spending time with the Kids and learning again to appreciate the amazing job Jan does -- taking care of so much -- including most of Colin's treatment.

###

Wednesday, December 24, 2003 11:38 PM CST

Merry Christmas from all of us.

Jan & Clint
Kelly, Colin & Emma

Thursday, December 18, 2003 10:14 PM CST

7 more wake-ups until Santa comes!!! The kids are so excited :)

Colin's labs today were: WBC 0.9; hemoglobin 9.6; platelets 17,000 and ANC 144. So off we went to Children's 8E clinic today for another platelet transfusion. First we had to stop at Speedway SA for a container of french onion dip and a bag of potato chips! You would think Colin was on steroids this week.

His transfusion went well. Since they started "washing" the platelets and premedicating him with Tylenol and IV benadryl, things have been going smoothly. No reactions. Thank God! We are so THANKFUL for those who voluntarily donate platelets! There is always a shortage of platelets. I can't think of a better gift to give, then the gift of life. It is time consuming to donate them, but well worth it. And Colin is proof of that.

We are hoping the GCSF shots kick in here this week and his counts will be good enough next week so he can go in for his spinal tap with chemo on Tuesday.

Thank you Mary Beth for spending the afternoon with Emma!! And thank you Mary L. and Lauren for picking up Kelly from school today and taking her to McD's for dinner :) We sure feel blessed to have as many helping hands as we do. It makes things a lot easier for these hospital/clinic stays. THANK YOU!!

Jan

Tuesday, December 16, 2003 9:42 AM CST

Colin's labs yesterday were: WBC 1.0, HGB 10.1, Platelets 17,000 and ANC 320. Typical counts the week after Ara-C. We had to go to Children's yesterday afternoon for a platelet transfusion. We will check counts again Thursday to see if another transfusion is necessary. We have pulled Colin out of school this week because of his low counts and all of the flu warnings. We want him feeling well for the holidays. I will be so glad when this season is behind us and spring is here!!

Colin is getting the nightly G-CSF shots until his counts climb back up. They should be nice and high for Christmas.

Hard to believe Christmas is next week. I am thankful for the convenience of on-line shopping. And for premade holiday shape cookies from Market Day!! Just throw in the oven and bake and decorate:) I'm taking the easy way out this year.

Jan

Friday, December 12, 2003 10:21 AM CST

Wednesday morning we got the call that a room would be ready for Colin in the HOT unit at Noon. We took Emma to Mary's house and headed out to the hospital. Colin's nurse Kathy accessed his port in the clinic and took us down to the unit for admit. We got settled into our room and chemo was started. They first gave him a 24 hour dose of Zofran through his port and then 1/2 hour infusion of Doxorubicin. After the Doxorubicin was finished, they started the 24 hour dose of ARA-C.

I was able to talk with one of Colin's oncologists about his treatment. We were told a few weeks ago that Colin is getting near the life time maximum dose of the Doxorubicin. Doxo has a life time max because of the damage it can do to the heart. Yesterday I talked to the onc and found out that he can still get 2 more doses of the Doxo. We will continue doing echos to monitor his heart and it is something we will be monitoring closely through puberty in the years to come. I requested a meeting with the onc because I want to make sure that we are doing EVERYTHING that we can to make sure Colin stays in remission. I don't want to add more drugs, but I do want to know we are doing everything possible. We have altered his protocol in the past year with a few adjustments -- changing his IV Methotrexate to oral because of the delays he was having. Also he had the anaphylatic reaction to his PEG L-ASP shots last February. So he hasn't been getting those. The replacement drug for the PEG is called Erwinia. Frustrating to me is that Erwinia is NOT being manufactured at this time, so he isn't getting anything. Unbelievable to me that this could be possible in 2003!! The oncologist told me that it is common for the kids to reach the lifetime max of the Doxo on this protocol. Also the allergy to the PEG/Aspariginase is very common. We feel switching from the IV Methotrexate to the Oral has helped him stay more on track with fewers delays, thus letting him get the rest of his drugs more frequently. What we need to remember is that the goal is to keep Colin in remission -- and he IS in remission, so the drugs are doing their job. Some days it is hard not to worry!!

One perk to Colin being admitted a day late this week was that the Milwaukee Buck's came to visit the kids on the HOT unit yesterday afternoon. Colin got to meet players Michael Redd, Desmond Mason and Daniel Santiago. He got autographs and pictures and a winter hat and other souvenirs. Both Michael Redd and Desmond Mason sat down with Colin and another boy and played video games with them. Pretty cool!! Another parent had a digital camera, so I asked him to take pics of Colin and email them to me. I will put them up on his site when I get them.

Colin came home last night and was not feeling too good. He was nauseated and had the chills and aches. He is feeling a little better today but is staying in and recovering. The Ara-C is pretty hard on him.

Here is a link to the 2003 National Childhood Cancer Awareness Tree in Washington DC. We had a ribbon put on the tree in honor of Colin. 2003 tree

Thank you for keeping our family in your prayers.

Jan

MY VENT THIS WEEK: As I'm sure you have been hearing in the news, there seems to be a lot of flu going around, and there is a shortage of the flu shot. Now I'm hearing the media suggesting that people go and get the new Flu Mist. And just today I see that insurance companies are now starting to cover it. I cringe when I read this. The Flu Mist is a live virus. If you are in contact at all with with an immunocompromised person, and you do get the mist, you should avoid contact with that person for 3 weeks. I ask you to read the fine print about the mist before you go and get it. Also if you have gotten the mist recently, or plan on getting it, AND you think you will be in contact with Colin, please let us know so we can make other arrangements. THANK YOU!!

Tuesday, December 9, 2003 10:09 PM CST

The flu season is upon us (just in case you haven't watched the news or read a newspaper). Colin was scheduled to go inpatient today for his Ara-C and Doxorubicin. We received a call from his nurse this morning telling us that there weren't any rooms available. She told us we could bring Colin in for his check-up in the clinic. There was a possibility that a room would open up tonight, so they wanted to have him ready in case that happened. However after we got to the clinic, we were told that the entire hospital was filled to capacity, and that there would not be any rooms available tonight. His name is first on the list to be admitted to the HOT unit tomorrow as soon as a room opens up. They will call us when that happens.

The good thing about not having to go inpatient is that Colin was able to take part in his school's Christmas program this evening. :) Last year he missed the program because he was inpatient. So we sure were happy tonight watching him singing and having a good time with his class. Both kids did a great job.

Kelly and I had an awesome girl's day out on Sunday. We took the Amtrak train downtown Chicago with Mary Beth, Megan and Katie. We spent the entire day shopping on Michigan Avenue and taking in the Christmas lights and the atmosphere of a big city at Christmas time. Mid-afternoon we stopped in to rest our tired feet at Ghiradelli for a hot chocolate and chocolates. We had lots of fun. We came home on the last train back to Milwaukee -- 8:05. What a day! Next year we are thinking that we need to go in for an overnight.

Thanks for signing Colin's guestbook. I have not been very good at emailing people back. It is so great to see so many people we know. Laurie and Jeff who recently signed the book are friends of ours that we met on our honeymoon cruise in 1991. We keep in touch via annual Christmas cards. Thanks to all of you for signing the book and checking in on Colin!

Jan

Tuesday, December 2, 2003 8:46 PM CST

Colin's counts looked real good this week: WBC 3.3; Hemoglobin 13.3; Platelets 172,000 and ANC 2,112. His appt today was at 2 p.m. at the clinic for Vincristine (chemo pushed into his port). We then had to be at the heart center at 3 p.m. for an echocardiogram. His heart looks good. For the next 5 nights Colin will be taking oral chemo --VP16, also known as Etoposide. He calls them hotdog pills -- they are big and orangish/brown in color. He takes 3 tonight, 2 tomorrow and alternates for 5 nights. The kid is a pro with pills!

We had a nice Thanksgiving and enjoyed our long weekend here at home. On Friday night we went to the Whitefish Bay Christmas parade. Kelly was in the parade with her girlscout troop. Colin and Emma collected lots of candy. We were reminded of a year ago when we were at the parade and Colin was not feeling nearly as good as he was this year. It feels GREAT to have over a year of this crud behind us!!

Clint and the kids hung the Christmas lights outside on Sunday. And we put most of our decorations up inside the house. We are going to put our tree up this Friday. The kids are excited for St. Nick to come on Friday night.

Next week we are due to go in-patient for 24 hour Ara-C and Doxorubicin.

I ask for prayers that Colin makes it through this flu season without getting it himself. It sounds like it is going to be pretty harsh this year. At clinic today they reminded him that the most important thing he can do is to WASH his hands.

Jan

Tuesday, November 25, 2003 10:44 PM CST

Colin is having a great week. His labs on Monday were good -- platelets 307,000. WBC 5.5, Hemoglobin 13.9, ANC 2,915. He was on prednisone last week, so his ANC is nice and high. He just finished his last dose of his 24 hour methotrexate, and is on 6MP for the next 7 nights. He went to school yesterday and all day today. Tomorrow they will be dismissed at 11:30 a.m. for the long holiday weekend. We are looking forward to it.

Last Sunday at mass they were doing a special annointing of the sick. Colin was annointed by Father Alan.

Happy Thanksgiving! We have so much to be thankful for this year.

We thank you all for your prayers for Colin and our family!!

We are thankful that Colin is staying in remission and is tolerating his chemotherapy as well as he is.

We are thankful to so many friends and family who are helping us get through a very difficult time in our life.

We are thankful that Colin has a very special teacher this year. She has really made learning fun for Colin. He loves going to school. There are so many days that I pick him up and he tells me that he wishes the day was longer!

We are thankful to the St. Monica school families who are still delivering meals to our house every Tuesday!

And Clint and I are so thankful for our 3 beautiful children. For their strength and courage going through this journey.

We feel so blessed!!

Happy holidays.

Jan, Clint, Kelly, Colin & Emma

Tuesday, November 18, 2003 8:08 PM CST

Things are going well here. Last week Thursday Colin was able to go in for his spinal tap and chemo (Methotrexate, Ara-C and HDC into his spine). His platelets finally budged and were up to 84,000. Today at clinic I asked how his spinal results looked, and was told everything looked great. Always a relief.

Yesterday morning Clint and Colin went for labs before school. His platelets are at 262,000. Good to see them up again. Today was our longer clinic day. Before going to clinic, Colin drank a 24 oz bottle of water and a hot chocolate. He also got a large hot chocolate at the skywalk coffee cart. Our goal was to have him plenty hydrated for his chemo. Goal accomplished -- he went potty as soon as we got to the clinic, and the urine dip test came back at the level it needs to be. We saved ourselves an hour of pre-hydration. We are getting pretty good at this stuff :-) He got some Zofran (anti-nausea med)in his port and then his chemo was started, which took an hour to run. After that he had to do two hours of post-hydration through his port. Colin read a book to me, reviewed his spelling words for the week and his word list. We made a trip to the coffee shop for some snacks and a quick look around the gift shop. He also played a couple of video games with some of his clinic buddies. Before we knew it, it was time to have his port deaccessed and go home. He was feeling good enough to go back to school for the last hour of school and then his boyscout meeting. What a trooper!! The children in his class are preparing for a Thanksgiving play scheduled for this Thursday morning. We are looking forward to it. Colin invited his nurse, Kathy, to come watch -- she went so far as to change her work schedule so she could come on Thursday morning! That really says a lot about the nurses at Children's Hospital. She truly is a special person and I know she has a special place in her heart for Colin. She tells me that he reminds her so much of her son when he was Colin's age.

Today Colin started his 5 day pulse of Prednisone. As always, he is extra hungry when he is on that med. Next week we are doing oral chemo at home. No clinic visit -- yippee!!

Jan

Monday, November 10, 2003 2:55 PM CST

We are back home today. Colin was fever free all day yesterday and all through the night last night. The cultures they took all came back negative. His counts have gone way up (ANC over 3,000), so we can stop the nightly G-CSF shots. His platelets are up to 42,000. They need to be at least 50,000 to go ahead with his scheduled chemo this week. We cancelled his appt for tomorrow and rescheduled for Thursday.

Thanks for thinking of us and for all the nice notes in Colin's guestbook.

Jan and Colin

Saturday, November 8, 2003 9:58 PM CST

I'm back from my retreat feeling renewed, refreshed and relaxed. The Angel on My Shoulder retreat for cancer cargivers was exactly what I needed. I met so many strong, amazing, caring people.

On Thursday afternoon I had to take Colin back out to Children's for platelets (his labs showed they were at 17,000). We were also told that his ANC (infection fighting number) was 0! Chances are pretty good that with an ANC of 0, he would most likely end up sick. After we got home, Clint insisted that I go on the retreat. We had backup people to call just in case Colin had to go to the ER. So, off I went.

Friday night Clint took Colin's temp and it was over 101.5. By the time they got to the ER it was 104. The ER hooked him up to fluids and started IV antibiotics. It took until after 1 a.m. for them to finally get admitted to the HOT unit! Good grief!

This morning Colin's platelets were again at 17,000 and his hemoglobin was 7.? He got both platelets and a blood transfusion. His cultures they took last night came back negative. They will draw more tonight. He is coughing quite a bit and has been sleeping a lot.

I stopped at the hospital on my way home from the retreat. The guys were doing good. After a short visit I headed home to be with the girls. Tomorrow I will take Kelly and Emma out for a visit. Hopefully Colin's counts will be climbing up and he will be feeling better quickly.

Please say an extra prayer for him. Thanks!!

Jan

Tuesday, November 4, 2003 10:57 PM CST

This week is Colin's low platelet week. Yesterday his labs came back with 12,000 platelets. I took him out to Children's for a transfusion in the afternoon. Everything went well. They premedicated him with IV Benadryl and Tylenol. The Benadryl had him sleeping within minutes. We will do labs again on Thursday morning to see if he needs another transfusion.

Meet the United States National Soccer Team's newest "Time-In" Member: Click here to read You can also click on the link on their website on the left hand side that says "Time In" for more information. On November 14, the National Soccer Hall of Fame is dedicating a special section for Time In Honorees. A brick has been made up with Colin's name on it and will be in the Soccer Hall of Fame. With Colin's ongoing treatment, we are unable to attend the ceremonies next week. However we look forward to the day we can go and see his brick and all of the other time-in honorees.

This Thursday evening I am leaving for a 2 day retreat for cancer caregivers. Angel on my Shoulder Retreat
I was having a particularly bad day a few weeks ago and found the brochure in the clinic waiting area. I decided I needed to go! My friend Grace (Kate's Mom) and I are driving in together. Hopefully we will get some R&R :) Colin is getting his nightly G-CSF shots this week. I have always given him the shots. On Sunday Colin and I showed Clint how to give the shot. He did a great job and has Colin's approval to give them this week when I'm gone.

Thanks for checking in on us.

Jan

Thursday, October 30, 2003 1:56 PM CST

Colin's in-patient stay went well and we were able to come home last night. He is home from school today. The Ara-C makes him feel pretty cruddy. It is a gorgeous day here today -- we just went on a short walk to the waterfall in the park.

Thanks to those who came out to visit us at the hospital yesterday. It makes the time go by quicker.

Thanks also for your continued prayers for Colin and our family.


Jan

Tuesday, October 28, 2003 12:04 PM CST

Colin's counts are good enough to go in for his 24 hour in-patient chemo today. WBC: 3.5; Hemoglobin: 12.1; Platelets 108,000; ANC 2,695. I'm picking him up from school at 1 and we will head out. If things go smoothly, we should be able to come home tomorrow evening.

Jan

Tuesday, October 21, 2003 2:28 PM CDT

Colin's counts were good enough to go ahead with his appt today. We were ahead of schedule this morning, so our first stop was at the coffee cart on the skywalk for a hot chocolate. We then went to the heart center for an echocardiogram. His heart looks great. After his echo we went to clinic for a quick check up, had his port accessed and his nurse gave him his push of Vincristine, flushed his port and deaccessed him. Nice quick appointment. We stopped at Cousin's Subs to pick up a sandwich for Colin to have at school for lunch. He was back to school at 11 a.m. For the next 5 nights, Colin will be taking an oral chemo, Etoposide/VP16

The above photo is from Heartworks Photography, the company that was at Children's Hospital two weeks ago taking pictures of the kids. What a handsome cowboy :-)

Jan

Friday, October 17, 2003 5:26 PM CDT

This week Colin was able to go to school every day all day long!! This is the first time since he relapsed that he has completed an entire week of school. :-)

Kelly and Colin both have soccer games tomorrow morning. My sisters Mary and Peggy are picking me up bright and early for a day of shopping in Chicago.

Have a nice weekend.

Jan

Wednesday, October 15, 2003 11:38 PM CDT

We are having a great week here. Colin's chemo drugs this week are all oral, so we did not have to go out to Children's on Tuesday. This is our favorite week every cycle :-) On Monday I was a chaperone on a fieldtrip with Colin's 2nd grade class. We went to a petting farm. We could not have asked for a more perfect day. We had a nice fall day with lots of sunshine. The kids did so many fun things -- pet a 4 day old calf, milked a cow, ran after and picked up chickens, rode a pony, went on a hayride, pet sheep and learned all about ostriches. Before leaving all the kids picked out a pumpkin to take home.

Colin's blood counts came back great this week. His platelets are 275,000. I am happy about that because today after school he went out to ride his bike. About 1 minute later I heard a child crying/screaming. It was Colin. He wiped out in the road. He hit his cheek pretty hard and a lump quickly appeared. We put ice on it right away which helped. I'm sure it will be black and blue. He had his helmet on which I believe prevented further injury.

Thank you for keeping Colin and our family in your prayers. We feel very blessed to have so many wonderful friends and family!!

I better get to bed. I have to wake Colin up at 4 a.m. to give him his Leucovorin pill Click here to read about Leucovorin . He has to take that pill 48 hours and 60 hours after he started his Methotrexate His Methotrexate dose is for 1 day only, 40 pills. On Tuesday he took 10 pills every 6 hours (4 a.m., 10 a.m., 4 p.m., 10 p.m.) We came up with that schedule to work around his meals. It is best to take the Methotrexate on an empty stomach. He is also on 6MP a/k/a Mercaptopurine or Purinethol for 7 nights.

Jan

Wednesday, October 8, 2003 8:01 AM CDT

Colin had a good day yesterday at clinic. His counts this week look great: WBC 2.4, Hemoglobin 10.5, Platelets 224,000, ANC 1,152. His chemo this week was Cyclophosphamide with Mesna. We went to Clinic at 9 a.m. Colin needs to be hydrated to a certain level before his chemo can start. For b-fast he had a hot chocolate, and on the way to the hospital he drank a water bottle full of water. We also stopped at the coffee cart on the skywalk for another hot chocolate. By the time we got to clinic he was ready to give a urine sample. His level was where it needed to be :) His nurse Kathy put Zofran through his port and by 11:15 his chemo was up and running. It takes an hour for it to run through. And after that he had to get 2 hours of post hydration. It was a long day, but we stayed busy the whole time. We were invited down to the HOT unit where there was a photo studio taking pictures of the kids. They got to pick out fun clothes to dress up in. Colin was a cowboy -- a very handsome one :) His friend Katie was a princess. They even took some shots of Katie and Colin together. The two kids have known each other since February, and have such a fun time when they are at clinic together. See picture of Katie and Colin above. After the photo session, we went back to the clinic and worked on spelling words/sentences for Friday's test. Colin also saw his friend Cody and played Play Station with him for awhile. Cody had a bone marrow transplant and is now back home and seems to be doing good. He looked great.

Colin and I made it out of the hospital and home just in time to pick Kelly up from school. Colin's cub scouts had their first meeting after school -- he was feeling good, so he went.

He is back on Prednisone for 5 days this week. Emma and I need to go grocery shopping today.

Thank you for your messages in Colin's guestbook. Yesterday at clinic Colin and I asked when his treatment will be finished. It looks like it will be the first week of October, 2004.

Jan

Wednesday, October 1, 2003 11:39 AM CDT

I called the clinic this morning to find out the results of Colin's spinal. I wanted to find out how everything looked close up, under the microscope. The report came back good -- the fluid is clear, not cloudy, and there is no leukemia present.

Jan

Monday, September 29, 2003 8:13 PM CDT

Colin had his spinal tap with chemo this morning at 9:30. We were lucky to get an early morning appointment since he can not eat or drink anything after Midnight the night before the procedure. After recovering for 1/2 hour in day surgery, he was able to go back up to the clinic where he slept for about an hour. I asked his nurse pracitioner how his spinal fluid looked. She told me it looked good -- clear. (If the fluid was cloudy looking, there would be more reason to suspect relapse.) And that there wasn't any pressure when she went in with the needle. That is a good sign. I was/am so relieved! The past week was pretty scary not knowing if something more was happening. Colin was pretty tired from today's appointment, so we went home and took it easy for the rest of the afternoon.

Colin's counts are back up and looking good. Platelets are up to 205,000 :-)

Thank you for praying for Colin this week.

Jan

Wednesday, September 24, 2003 10:15 PM CDT

I should have known better than to say that we had a week "off". Yesterday I took Colin to the eye doctor for an exam. I had scheduled the appointment 2 weeks ago when he told me he was having trouble reading things up close. His eye exam went fine. His vision is very good. He does not need glasses. The doctor was concerned that Colin's optic nerves looked somewhat swollen. With Colin's medical history, he said that he would like to have their specialist look at his eyes. They scheduled us for an appointment on Friday morning. Of course I was instantly worried about what this could mean. He told me to go home and not worry about it. As if!

I called Children's first thing this morning to let them know what was going on. They called me back and said that Dr. Camitta wanted to see Colin. I picked him up from school and we headed out. Dr. Camitta looked at his eyes and agreed that they did look swollen. The plan was to have Colin's port accessed, do a blood draw, put Emla (numbing cream) on his back, and have us go see the doctor in the eye clinic. After the eye appointment we were to go back to the oncology clinic for a spinal tap. The concern being that this could possibly be a CNS (central nervous system) relapse.

We went to the eye clinic. They did another vision exam which he passed with no problems. The doctor looked at his eyes and said that yes there was some swelling. However it appeared to her that everything is functioning normally. She said that it could very well be that Colin's optic nerves have always looked like that. We don't know since this is the first eye exam he has ever had. She called Dr. Camitta with her opinion. We went back to oncology. Dr. C decided that since Colin is not having any symptoms (headaches, fevers, pain, bleeding) that would indicate a relapse in the CNS that we would not do the spinal tap today. Colin is already scheduled to have one on Monday. If they did one today they would still need to do another one on Monday. Why put him through 2 spinal taps in less than a week.

We then went to the Eye Institute. They took photographs of both of Colin's eyes. We will now have a record of what they look like today. We will also be doing a follow-up at the eye department in a few months.

I am feeling a bit better with today's news. I hope that Monday's spinal confirms that there is nothing further happening. That Colin is still in remission. Those are the prayers I am asking for this week.

His platelets today are up to 75,000. Dr. Camitta told him he could ride his bike with a helmet :) He hasn't been able to ride it for over a week.

Thanks to our friend Paul C. and Colin's friend Michael C. for taking Colin to the Cubscout raingutter regatta tonight at school. Clint has been in Chicago this week at a conference. He is due back tomorrow. It just so happens to be the same conference that he was at last year in Atlanta when Colin relapsed.

Colin received a very special package in the mail last Friday. It was from the Green Bay Packers. They sent him three NFL Packer shirts, two hats and one very special game ball signed by #4 himself, Brett Favre! He wrote "To Colin, All the best, Brett Favre 4". The ball even has grass stains on it. Wow, very cool!! Thanks very much to Uncle Tim and his connections to the NFL :-) You sure made Colin's day.

Jan

Monday, September 22, 2003 9:48 PM CDT

We were at Children's yesterday afternoon for Colin's blood draw. His labs came back with platelets at 24,000. They are slowly going up. If they would have been below 20,000 they would do another transfusion. It is a big relief to know they are going up. He was scheduled for a spinal tap and chemo tomorrow. Since his platelets were below 50,000 he can't have the spinal/chemo. We rescheduled for next Monday. We are looking forward to giving his body this break in treatment and letting Colin have a feel good week. His hemoglobin is on the low side (7.5), however it should be on its way up. His energy level is good and he is feeling good. He went to school all day today. I expect higher numbers on his next lab visit. His ANC was over 4,000 so we were FINALLY able to stop the G-CSF shots. He was very happy when I told him he didn't need one tonight.

Things are going well here. Kelly and Colin are adjusting well to school. Clint and I managed to go out on a date both Saturday and Sunday night. Emma is enjoying her Wednesday afternoon library story time. She is also very excited for preschool to start in October. She has told me that I will be able to drop her off and go home. And that she will be able to play with all of her new friends. :-)

FYI -- there is a blood drive scheduled at St. Monica's Parish (Donovan Hall) this Thursday, September 25, from 2-7 p.m. Great opportunity to give the gift of life.

Jan

Thursday, September 18, 2003 10:00 PM CDT

Colin and I were back at the lab at 7:30 this morning for his blood draw. After labs we had a few minutes before he needed to be to school, so we stopped at Super America for a raised glazed donut :-) We were hoping that would help boost the platelet count. ha, ha. I got the call a few hours later from Children's that his platelets were back to 15,000. Colin needed to come out for another transfusion. They put in an order for him and told us to come out around 3:30. When I picked him up from school he showed me his tooth that came out today! Lost tooth -- low platelets, not a good combo. I was surprised that it wasn't bleeding and seemed to have clotted pretty well. After he got his IV Benadryl he fell asleep pretty quickly. He must have been putting his tongue where his tooth came out, because it started bleeding while he was sleeping. They called up the dental clinic to have them take a look. They gave him Thrombin Topical to put on a gauze pad and hold on the area. It worked. He hasn't had any bleeding since. I had him do it twice tonight.

After the transfusion, they waited 30 minutes and then drew some blood to see what the post transfusion platelet count was. It was up to 21,000. We are hoping that number keeps going up. We are to keep a close eye on him this weekend, with orders to call if he has excessive bruising or bleeding. We are taking him to the lab at Children's on Sunday for another blood draw. Praying for a higher platelet count!!

While I seem to be exhausted with all of these clinic visits, Colin just keeps going and going. He came home tonight, ate dinner, worked on his homework and read a book to me. He really is a trooper.

Time for Clint and I to go play tooth fairy :-)

Jan

Tuesday, September 16, 2003 10:27 PM CDT

Colin's platelets were down to 15,000 yesterday. This always happens the week after his Ara-C. Today we were back at Children's for a transfusion. I am happy to say that the transfusion went very well -- no reactions!! The problems he has had with his platelet transfusions in the past has weighed heavily on my mind this month. I have been very nervous for this day to come. They decided to start having the platelets "washed" to take out the white blood cells that may have been causing the reactions. This did the trick. He didn't have any problems at all. I am so relieved!! For Colin this is a huge thing, he needs 2-3 platelet transfusions every 6 weeks. I was really worried that he wouldn't be able to get them anymore. Hopefully this is the answer to the problems.

We are going for labs again on Thursday morning to see where his numbers are at. We will continue with the nightly G-CSF shots until we hear his numbers are back up where they should be.

Thank you for keeping Colin in your prayers!! It means so much to us to know that so many people are thinking of him.

Jan

Friday, September 12, 2003 8:16 AM CDT

I'm a little behind in updating. Colin's chemo stay went well: Doxorubicin and then 24 hours of Ara-C. They medicated him with Benadryl, Tylenol and Vioxx to help prevent the problems he has had in the past with this drug. This seems to be the right combo for him. We were able to go home on Wednesday night. Yesterday he was feeling pretty cruddy when he woke up. He was having some abdominal pain and pain in his chest. I took him back to the clinic at Children's to make sure things were ok. Margaret checked him over and suggested we give him a Zantac for heartburn. His chemo most likely was the reason for him not feeling so great. By last night he was feeling better. This morning he got up and said he felt good and wanted to go to school.

We are back to doing the nightly G-CSF shots to help boost his counts.

We met a few new patients and their families while in-patient. It amazes me the number of children going through cancer treatments. I am also amazed by the courage they all show.

On Sunday we are going to the Children's Hospital Celebrate Life party. Oncology patients, families and staff are all invited.

Have a nice weekend.

Jan



September is National Childhood Cancer awareness month.

Tuesday, September 9, 2003 8:37 AM CDT

It was one year ago today that we found out Colin relapsed. The year has gone by so fast, then again, it has gone by very slowly. Last year at Colin's first soccer game of the season, he was having so much trouble/pain with his wrist and shoulder area. This past weekend he was back on the soccer field for his first game of the season. What a wonderful sight!! Today we will celebrate one complete year of treatment behind us. :)

Colin's labs this week are good enough for his in-patient chemo stay. We scheduled his appt for 1:30 so he could go to school part of the day today. He really is enjoying 2nd grade. It is so nice to have him come home and tell us all about his day and what he learned that day. Last night at dinner he filled us all in on the Titanic. He asked Clint and I if we were teenagers when the Titanic sank!! Too funny. He asked me if I could go to the library this morning to check out a book about the Titanic so we could read it while he is in-patient.

Thank you for praying for our family. Please pray that the next year of treatment goes well for Colin and that he continues to stay in remission. And that today's chemo stay goes well enough that he won't need to stay in more than one night. Thank you!

Jan

Tuesday, September 2, 2003 11:00 PM CDT

Kelly and Colin headed back to school today. Kelly is in 4th grade and Colin is in 2nd. Hard to believe! They both had a good day (so did Emma and I). I made Colin's clinic appt for as late as possible today so he wouldn't miss too much of his first day. I picked him up at 2:30 for his 3 p.m. appt. Today he got Vincristine -- a quick push of the med into his port. He is also on VP-16 (Etoposide) for the next 5 nights. His labs this week were: WBC 3.7, Hemoglobin 12.8, platelets 158 and ANC 1,628.

We enjoyed the final days of summer this past weekend. We left early Friday morning to go to the Noah's Ark water park at Wisconsin Dells. Lots of fun. We also did some go-kart racing. Friday night we left the Dells and went to visit Grandpa & Grandma in PDC for the holiday weekend. The kids swam quite a bit. We also went horse back riding and hiking. And the kids got to ride in Grandpa's 1969 Chevy Impala convertible. I had fun driving it again -- it has been almost 20 years since I was in high school driving that car :) We had a great weekend.

Jan

Tuesday, August 26, 2003 8:44 AM CDT

Colin's blood counts are much better this week. WBC: 3.0, Hemoglobin 13.6, Platelets 209 and ANC 1,260. Today he is doing his oral methotrexate for 24 hours (10 pills every 6 hours). We started them at 5 a.m. He is also due to have 1 1/2 6MP pills every night for the next 7 nights. We were at clinic 3 days last week. We are very happy to have a break from there this week :) This is our final week of summer vacation before school starts. Unbelievable!!

This journal seems to be pretty repetitive with each cycle. But I have gone back and read the past year of entries, and am so glad I have this record of Colin's treatment. It is pretty amazing to me how much he has gone through and how strong he remains. Thank you for your continued prayers for our family.

Jan

Thursday, August 21, 2003 4:48 PM CDT

It became pretty obvious yesterday that Colin's low hemoglobin was affecting him. He fell asleep before lunch and slept for a few hours. He was pretty low on energy and not wanting to eat. I called the clinic and we decided that I would bring him in this morning for a blood transfusion. We headed out there at 8:30 this morning. About 5 minutes from home, I remembered that we didn't put Emla (numbing) cream on his port, so we turned around and came back home to put it on. For the blood transfusion they gave him a higher dose of Benadryl and some Tylenol. The first bag ran for almost 2 hours and he was doing well. He slept through most of it. They then put a second bag up. About 1/2 hour into that bag he started coughing and seemed to be having a hard time. (nothing like the platelet incident two weeks ago). This seemed to be a mild reaction. I got his nurse practitioner and his nurse to come in and check him out. They stopped his blood to give him some more Benadryl into his port. They then started the blood back up slowly to see how he would do. He kept coughing though and his blood pressure was pretty high. They decided that he was done with the transfusion and stopped it at that point. The coughing stopped shortly after the Benadryl kicked in. They kept us there for them to monitor him. His blood pressure didn't seem to want to go down. But finally about 1 1/2 hours later that number finally started going down and we were able to come home.

I should have known better than to tell Megan we would be gone for 3-4 hours. It was just about 7 1/2 hours! THANKS MEGAN.

I am quite concerned about the problems he is having with blood products the past month. I worry because I know he has an entire year ahead of him which will require many more platelet and blood transfusions.

Kelly and I are getting ready to head out the door to go see Aaron Carter in concert at the Riverside Theater. Kelly was so excited when she heard I bought tickets for just her and I. As tired as I am today, I am looking forward to a girl's night out. :)

Please continue to keep Colin in your prayers. THANK YOU!

Jan

Tuesday, August 19, 2003 5:57 PM CDT

Today was Colin's long chemo day in clinic. We arrived at 9:30 a.m. and didn't leave until 3:30 p.m. He first got 2 1/2 hours of hydration, and then his chemo, Cyclophosphamide, which ran for an hour, and then 2 more hours of fluids. Things are going well. His counts are: WBC 1.6; Hemoglobin 8.0; platelets 144,000 and ANC: 704. His hemoglobin is on the low side. We are on the fence whether to give him a transfusion or not. For now we are waiting to see how he is feeling the next couple of days. I can tell he is lower on energy than normal, he took a nap yesterday afternoon which is unusual for him. Today he said he was feeling fine. So we will watch him closely to see if there are any changes.

Summer has flown by. Two weeks from today the kids go back to school!!

Jan

Tuesday, August 12, 2003 10:46 PM CDT

Colin's labs this week: WBC 15.1; Hemoglobin: 8.2; Platelets 50,000, ANC: 10,000+!! The GCSF shots are the reason for the high WBC and ANC. We stopped the shots on Sunday night.

This morning we were back at Children's for a spinal tap with chemo. The procedure went well. RELIEF.

Colin and Kelly are going to Camp Rainbow on Thursday. It is an all day camp for kids with cancer and their siblings. Even Colin's nurse practitioner Margaret will be there. We are hoping for a nice sunny day for them.

Thank you Barb (Grandma L) for spending the morning with the girls. :)

Jan

Friday, August 8, 2003 8:46 AM CDT

Colin went for his labs yesterday morning. His platelets were still at 16,000. We went to Children's for a transfusion. They premedicated him with Benadryl and Tylenol. The Benadryl really makes him tired, so he was sleeping when he got his transfusion. After monitoring him for a bit, his nurse went out of the room to get his heparin (flush for his port). Colin sat up and didn't look right to me. His lips were swollen and he told me to "get Kathy". I quickly went out and got whoever I could find to come in and help. Dr. Camitta, Margaret (Colin's nurse practitioner), Kathy and a few other nurses came right away. Dr. Camitta listened to his chest, and his breathing was good. They gave him a shot of Epinephrine and more Benadryl. Things calmed down and he seemed to be doing better. After monitoring him for quite some time, we noticed that he had welts on his tummy and groin area, and on his legs. They gave him medpredisone (steroid). For future platelet transfusions he will get premedicated with more Benadryl.

By 5:30 we were able to go home with instructions that I should give him Benadryl at 8. By the time we got home, he was looking much better. Colin was bummed that he had to miss his cousin Brendan's birthday party. I took him home, and Clint took the girls out to the party. Colin wanted them to still go "and bring me back my party bag and cake". :-) Colin and I ordered a pizza and ordered the movie "The Wild Thornberrys" from I-CONTROL. While we were sitting on the floor eating our pizza in the livingroom, Colin told me "this is the life". I had to agree :)

Another crazy day in this journey we are on. Please continue to keep Colin in your prayers, as well as all of the other children going through cancer treatments.

Jan

Wednesday, August 6, 2003 11:30 PM CDT

My computer crashed on Saturday, so I have had limited access. As usually happens after Colin's Ara-C stay, his counts have dropped. We went for labs on Monday and his platelets were down to 16,000. I took him in on Tuesday for a transfusion. No chemo this week. Tomorrow we are going back to the lab to see where his numbers are. We are still doing the nightly G-CSF shots. I did some reading on the web site link I put on his last journal entry. I got some good tips on how to administer the shot. They are going much better.

This week we are saying lots of prayers for Cody -- one of Colin's very good buddies from the hospital. He may have relapsed, they are going to find out today or tomorrow. It is so tough to hear news like this.

Jan

Wednesday, July 30, 2003 9:08 PM CDT

Colin and I are home already!! He went in-patient yesterday for his chemo. A 30 minute infusion of Doxorubicin and 24 hours of Cytarabine a/k/a Ara-C. We went to clinic at 10:30 a.m. and it took until almost 4 for his chemo to start and for him to be admitted to the HOT unit. Patience!!

In the past Colin has had problems with low blood pressure and chemo fever with this drug. It is definately our least favorite of all of his treatments. They premedicated him with Vioxx and also gave him Benadryl every 6 hours and Tylenol every 4 hours around the clock. It worked! His temp stayed below 100. We were pleasantly surprised to hear that we could go home today!! We will continue to do the Benadryl and Tylenol for 24 more hours and I am on fever watch. He is also getting eye drops 4 times a day until Friday. Tomorrow night he will start the G-CSF shots to help his counts recover.

We had a nice relaxing week at my parent's house. We are so lucky to have that escape only 3 1/2 hours from here when we need it!! Thanks Mom & Dad.

On Monday and Tuesday of this week there was a basketball camp fundraiser held for 4 kids in the area battling cancer (Colin included): Sam & Friends. Colin was able to go to the camp on Monday morning. Kelly went both Monday and Tuesday. They had a great time. We feel so fortunate to have excellent health insurance through Clint's job that has covered Colin's care. When asked if we wanted to be part of the fundraiser, we decided it would be a good opportunity for us to give back to the organizations that have helped us the past 6 years since Colin was diagnosed, including the Leukemia & Lymphoma Society, Make a Wish, the MAACC Fund (Midwest Athletes Against Childhood Cancer) and Children's Hospital of WI. Thanks to Dave Liccione for all of your hard work putting together this awesome fundraiser!!

THANK YOU Megan for watching the girls this week.

Jan

Tuesday, July 22, 2003 7:54 PM CDT

Counts this week: WBC: 3.1; HGB 11.8; Platelets 209,000; ANC 1,023.

Colin and I were back at clinic today. Today was the start of another 5 week cycle. First we went to the heart center for an Echocardiogram. His heart is looking good. After that we went to the oncology clinic for his check-up with Dr. Camitta and then his nurse Kathy accessed his port and gave him his chemo -- Vincristine, which is a quick push of the drug into his port. This week he is also back on the VP-16 (Etoposide) pills every night for 5 nights.

Tomorrow I'm taking the kids to Grandma & Grandpa's house for a few days of swimming and fun.

Jan

Monday, July 14, 2003 3:44 PM CDT

Things are going well here. Colin is doing a basketball camp this week in the mornings. And Kelly is at an all day Girl Scout camp all week. Today after Colin's camp, we went for his blood draw. I got the call that his labs look good: WBC 4.4; hemoglobin 11.9; platelets 245; ANC 1,848. He was on prednisone the past 5 days. This week he is scheduled for oral methotrexate and 7 days of 6MP at bedtime. We will start the methotrexate at 6 a.m. tomorrow morning, then again at Noon, 6 p.m. and Midnight. We are happy that we don't have to go out to Children's this week!!

We had a great time at our O'Neill family reunion in Dubuque, Iowa this past weekend. It was so great to see everyone again. On our way home from Dubuque yesterday we stopped at the Cave of the Mounds for a tour. The kids really enjoyed that. The last time Clint and I were there was in 1993 when we were expecting Kelly!

The summer is flying by way too quickly.

Jan

Tuesday, July 8, 2003 9:41 PM CDT

We have had quite a bit going on the past 2 days. Yesterday Emma went in for day surgery to have her adenoids removed. X-rays last month showed that they were very enlarged and needed to come out. Surgery went well and she is recovering nicely here at home. Hopefully this will help greatly with her breathing and snoring.

This morning Colin and I were at clinic for his long chemo day. Aunt Peg, Brendan and Jack happened to be at Children's for an appointment, so they stopped by for a visit. Brendan hung out with Colin most of the morning. They did crafts and played Game Boy with a few other friends in the clinic. We then went and met Peg and Jack for lunch in the cafeteria. Our day went pretty quick -- by 2:30 we were on our way home. Just before leaving the clinic, we were asked if we would like tickets to the Brewer's game tonight. First baseman Richie Sexson (he will be in the Allstar game next week) gave 50 tickets to Children's. Included with the tickets we got to go down and meet Richie before the game! All of the kids got Richie bobble head dolls and a Richie Sexson baseball cap (parents also got caps) and a few other goodies. When Richie came out, he autographed one item for each child. The kids had him autograph their bobble head dolls. We sat in Richie's section near 1st base. We had a good time. After 4 innings the kids were ready to go. Emma and Colin were both tired and not feeling their best, so we headed home. The Brewers hadn't scored when we were there, but we were listening to the game on the way home and heard that Richie hit a home run. Way to go Richie!

Tomorrow morning we are sleeping in and having a lazy day. :-)

THANK YOU Megan for coming over yesterday and today to be with the kids while I was taking Emma and Colin to appointments. We really appreciate all you do for us. The kids love having you here playing with them this summer. THANKS!

Jan

Tuesday, July 1, 2003 12:00 AM CDT

Colin and I just got home from Children's. He was admitted late on Sunday evening with a temp and low counts. Platelets were down to 6,000 and Hemoglobin was 7. He had to get a platelet transfusion and blood transfusion and they drew cultures since his counts were so low. They also gave him an antibiotic. His counts today are up a little bit and he is feeling well, so we were able to come home. We will go back on Thursday to check his numbers again. Still doing the G-CSF shots and hoping those kick in and bring those counts up soon.

We did enjoy a nice weekend at Grandma and Grandpa's in PDC. Perfect weather for hanging out at the pool. On Sunday we celebrated Emma's 3rd birthday. She was so happy to have so much attention on her all day. She sure is growing up fast!

Happy 4th of July.

Jan

Thursday, June 26, 2003 11:32 AM CDT

As we expected, Colin's platelets are low -- 11,000. After his labs this morning his arm where the poke was did not want to stop bleeding. Good sign they were low. He also has petichea (tiny bruising) on his neck and shoulder and under his eye. We are going to Children's for a transfusion later this afternoon. Kelly has tennis lessons until 2:50, after we pick her up we will head out there. Colin has agreed that he needs to take it easy today. No bike riding, skateboarding or jumping off the swingset!

Jan

Tuesday, June 24, 2003 7:26 PM CDT

Colin and I were back at Children's today for his appt. His counts came back good yesterday: WBC: 2.1, HGB 9.8, Platelets 54,000 and ANC 1,000. They are on the low side from his Ara-C treatment last week, however they were good enough to go ahead with today's treatment. He had a spinal tap with chemo. After his appt. we headed to his favorite lunch spot (Cousin's Subs) for a ham/mayo/lettuce sub :-) He was very hungry since he could not eat all morning before the spinal. We then headed to Target for him to pick out a CD. This summer the kids get a coupon whenever they read 60 pages -- the coupons are for various things from unlimited bear hugs all the way up to a new CD. Colin randomly chose the CD coupon yesterday. Of course it was burning a hole in his pocket, so we had to go out and get one today. He picked out the new Rugrats Go Wild soundtrack. I have to say this incentive program I have set up has really gotten Colin to read books. Whatever it takes!! Kelly is reading the new Harry Potter book, which will earn her lots of coupons when she is finished!

One would think that a spinal tap with chemo would wear a person out. Not Colin. As soon as we got home, two of the neighbor boys were knocking on our door asking to play with him. Off he went. I think I'm the only one who is completely worn out from these treatment days!! Tonight he is at a b-day party for one of the boys on the block. I have a feeling he will be ready for bed when he gets home. We have been doing the G-CSF shots every night since Saturday to help boost his counts.

It feels like summer here today -- high 80's and very humid. The AC is on for the first time this season.

We are going back for labs on Thursday. Typically Colin needs to have a platelet transfusion this week after his Ara-C. I want to make sure his platelets are ok before we head out for a weekend getaway to Grandma & Grandpas in PDC.

Thank you Barb (Grandma L.) for coming here today and spending the day with Kelly and Emma. They enjoy their time with you :)

Jan

Sunday, June 22, 2003 9:09 AM CDT

Colin is home and doing well. We went in on Thursday for Doxorubicin and 24 hour Ara-C infusion. They premedicated him with Benadryl, Tylenol, Zofran and a new med, Vioxx, to help alleviate the problems he has had in the past with this chemo. He did well with the chemo, however about 21 hours into it, he started feeling nauseated and his temp started going up. After ending his chemo, they wanted him to stay a few hours for observation to see what his temp did. They also drew blood cultures. His temp did not go down, so we decided he should stay in over night. Clint came out to stay with him on Friday night, and I went home to be with the girls. Friday night Colin was complaining of pain in his shoulder and chest area. They brought a portable x-ray machine to his room to take a pic of his chest. Nothing showed up on the x-ray.

Yesterday Colin woke up feeling good -- his temp was normal. They were able to come home in the morning. We are enjoying beautiful weather this weekend.

Thank you for your continued prayers for Colin and family.

Jan

Monday, June 16, 2003 11:47 PM CDT

I'm a little behind in updating. Things are going well here. The kids finished up school last Friday. What a school year it has been. We found out Colin relapsed on his first day of first grade! With all he had going on this year, he has done very well keeping up with his classmates. I'm so proud of him! We were very lucky to have a wonderful teacher (Mrs. Barry) who worked with us closely to help Colin keep up. Friday it was hard to say goodbye to Mrs. Barry.

Colin has been feeling good and his treatment is going well. Last week we were at clinic for Vincristine and tonight he finished up his 5th night of his Etoposide (VP16) pills.

We are due back at Children's this Thursday to be admitted in-patient for Ara-C. Colin has a tough time with this drug. Please pray that he does well this week with it. THANK YOU!!

Jan

Tuesday, June 3, 2003 3:29 PM CDT

Colin and I are enjoying a much needed break from clinic this week! He is on oral Methotrexate this week, so did not need to be seen in clinic. We went locally for his labs yesterday. All the numbers looked great(I wrote them down, but now can't find them). His platelets were over 200 and the rest of the numbers were high due to being on steroids the past week. This morning I woke him up at 6 a.m. to give him his first dose of Methotrexate (10 pills). He is back at school today and doing well. I went there at Noon to give him dose #2. He is such a trooper with all these medications -- I am constantly amazed at his resilience. We are hoping he can finish out the school year without missing any days. The last day of school is next Friday. We are all ready to have summer vacation. Now if it would just warm up around here!!

Thank you for continuing to keep Colin in your prayers. It seems like no matter where I go, people are telling me that they are praying for Colin. It really means a lot to our family.

Jan

Tuesday, May 27, 2003 10:59 PM CDT

Things are going well here. We had a really nice long holiday weekend. Friday night after Colin's soccer game we drove 3 1/2 hours west to Prairie du Chien to visit Grandma and Grandpa H. for a few days. The weather all weekend was perfect -- warm enough for the kids to swim in the pool (Grandpa turned the heater on so it was the perfect temp). Colin, Kelly and their cousin Brendan were the first ones in the pool for the 2003 season :) We also did some hiking at Pike's Peak State Park in Iowa and some fishing as well. It was a fun weekend. A much needed weekend away from home -- we were so happy everyone was feeling good!

This morning we were back at the clinic for Colin's chemo. His counts looked great: WBC 3.1; Hemoglobin 10.3; Platelets 138 and ANC 1,000. First thing they did was access his port and give him hydration for 2 1/2 hours. Finally at Noon his urine numbers were good enough to start the Cyclophosphamide and Mesna. That took an hour to go through, so we headed to the deli for lunch. Then two more hours of hydration. He is also doing 5 days of Prednisone. When Margaret, his nurse practitioner, told him it was Prednisone time, he said "Hoooray". I think he is the only kid I know of that likes to be on that stuff. To him it means he can eat lots of food for the next week. I went grocery shopping tonight :)

The WKLH radio marathon brought in over $1.2 million for Children's Hospital!! And Colin and Kelly turned in $413 that they collected at their school -- St. Monica's.

Jan

Wednesday, May 21, 2003 2:43 PM CDT

Things are going well this week. Colin's counts really skyrocketed from the shots. His WBC: 10.9; Hemaglobin 10.9; Platelets 73 and ANC over 7,000. Tuesday he had his spinal tap done in the OR. They normally do it in day surgery, but yesterday did them all in the OR. For that I had to put on a white jumpsuit type thing and shoe covers, a mask and a hat. After I got it all on, Colin told me I now looked like a doctor :-) I was able to stay with him until he fell asleep from the propofal, which happens very quickly. About an hour later he was awake and ready to be taken back to clinic. We got the word that the spinal fluid looked clear -- always a relief! Colin is back to school today and doing well.

This week one of our local radio stations is doing a marathon fundraiser for Children's Hospital of Wisconsin. I have been asked to come in and talk for 10-15 minutes about our experience with Children's. I will be doing that tomorrow at 12:15. Miracle Marathon The kids are also doing their part at school by asking kids to bring in their change for Children's Hospital. Tomorrow we will take all of the change collected and turn it in for Children's Hospital. We feel so blessed to have Children's Hospital of Wisconsin so close to our home. A huge part of the last 6 years have been spent there, especially in the past 9 months.

Jan

Sunday, May 18, 2003 7:07 PM CDT

Colin and Clint are back home tonight. The G-CSF shots finally kicked in and his counts are nice and high. He did have to get a third platelet transfusion for the week on Sat. and a blood transfusion. Tonight he is full of energy and happy to be home. Nice to have everyone under one roof again.

Jan

Friday, May 16, 2003 10:39 PM CDT

Colin is back in-patient tonight. He woke up this morning not feeling great. His temp hung around 100.3 all day today. We have to call Children's if the temp is over 101.3. Tonight after dinner he felt hot to me. He was 101.9. Called the HOT (hematology/oncology/transplant) unit and were told to bring him to the ER. His counts are low this week, so they have to admit for cultures and hydration. Clint took him out and I am here at home with the girls. Not exactly the way we planned our weekend. Hopefully this will be a short stay.

Jan

Thursday, May 15, 2003 11:12 PM CDT

Back for labs this morning, got a call a few hours later that his platelets were at 18 (18,000 -- normal range is 150,000-450,000). I picked Colin up from school and off to Children's we went for another platelet transfusion. His last cycle at this point in treatment he also needed 2 platelet transfusions in a week. I think by Monday we should see higher numbers.

How about that lunar eclipse tonight. Pretty neat to watch.

Have a great weekend :)

Jan


CONGRATULATIONS to my niece Katie on her graduation from college this weekend. We are so proud of you!!!

Wednesday, May 14, 2003 10:03 AM CDT

Monday Colin was scheduled to have a spinal tap. His counts came back with his platelets at a very low 4! No chemo this week. He got a transfusion -- post platelet transfusion counts put them up to 22. We will check his labs again tomorrow and most likely will be back for another transfusion.

Mother's Day here was very nice. Kelly and Colin got up extra early and brought me breakfast in bed (waffle, yogurt and orange juice) :) They then gave me their cards and gifts they made at school. Kelly made a pot holder. Colin painted a plant holder white and they put their thumb prints all over it in red and added eyes, spots and legs to make ladybugs. It came with a Marigold plant. The cards they made are priceless. Emma gave me a heart she painted. I also got lots of hugs all day long.

A few months ago Clint entered a GI Joe All American Hero contest. He wrote an essay about Colin. We got a call last week that Colin was chosen as the State of Wisconsin winner! He will be getting a prize package in the mail. He is now eligible for the Grand Prize -- they will be picking 5 kids to go to Washington, DC in September. Pretty neat!

Jan

Friday, May 9, 2003 7:13 PM CDT

We are back home. Colin was discharged yesterday (Thurs.) morning around 10 a.m. He is doing much better today. He wanted to go to school this morning -- I had a feeling he wouldn't make it too long. At 10 I got the call to come pick him up, upset tummy. He got in the car and made sure to tell me not to look in his backpack. He didn't want me to see the Mother's Day present he made at school :) I can't wait!

Colin is back on the G-CSF (Neupogin) shots this week to help his counts recover. Last night's shot went very well. They seem to be getting easier.

We have plans to take it easy this weekend. We are due back at Children's on Monday morning for a spinal tap and chemo (as long as his labs are ok). We are now 8 months into treatment. Hard to believe!

Jan

Wednesday, May 7, 2003 8:23 PM CDT

Colin and I are in-patient this week. We found out on Monday that his counts were good enough for him to continue with chemo. I was surprised to hear this, because usually at this point in his cycle he has low platelets. This weeks counts were: WBC: 3.6; HGB: 10.8; Platelets 157; ANC: 2,592. We came in yesterday for Doxorubicin and 24 hours of Ara-C through his port. Because of the high temps and low blood pressure problems he had with the Ara-C the last time, they decided to medicate him this time with Tylenol and Benadryl around the clock. He also is getting anti-nausea meds. He woke up this morning around 6 and ended up throwing up just about every 15-30 minutes most of the morning. He also had a croup like cough, so they had a respiratory therapist come and give him a breathing treatment which seemed to help. Even with the Tylenol, his temps were in the 103's most of the day. His Ara-C ended at 2:20 this afternoon. He hasn't eaten all day and has stayed in bed the whole time. Now finally tonight his temp is back to 99. We decided to keep him in over night for the additional fluids and just to make sure he is feeling ok before sending him home. The Ara-C is really hard stuff on the body.

Please continue to keep Colin in your prayers and that he may continue to tolerate the chemo as much as possible. He has a long way to go. We are so greatful that he continues to stay in remission and he is doing what it takes to fight this disease.

Thank you Mary Beth, Tim and Megan for helping Clint and the girls at home. And thank you Maribeth M. for having Kelly over after school yesterday and taking her to soccer practice.

Jan

Tuesday, April 29, 2003 1:25 PM CDT

Things are going quite well here. Last week's spring break was a great break for the kids. Colin felt really good all week. He did his oral meds at home and was able to enjoy the entire week. On Friday Clint took the day off. We surprised the kids with a trip to Chicago. We left on the 8 a.m. Amtrak train which got us to Chicago around 9:30. Colin loves model trains and was so excited about being on a real train. He stared out his window almost the whole trip. Great way to travel. We took a taxi to the Museum of Science & Industry and spent a good part of our day there. So much to do there -- we will definately have to go back to see the things we had to pass up. Later in the afternoon we went to the American Girl Place Kelly had her photo taken and printed out on an American Girl magazine cover; she also got to pick out a few things that were promised for her birthday. By 5:08 p.m. we were back on the Amtrak on our way home. It was a quick trip. The kids really enjoyed it and so did Clint and I.

This weekend soccer season started back up. Colin had a game on Saturday and one on Sunday. He played in both games :) What a difference from the fall season when we first found out he relapsed. It feels so good to see him out playing again with his teammates. Kelly also had a game on Sunday and did a great job kicking the ball.

Yesterday both Kelly and Colin were back at school. No more sleeping in. They weren't too excited to have me waking them up at 7. Only 6 more weeks of school until summer vacation :)

Colin's labs came back good yesterday: WBC 2.7; hemoglobin 11.5; Platelets 208; ANC 1,242. Good enough for us to go in this morning for chemo. Today he got a push of Vincristine into his port and a prescription for Etoposide for 5 days. It was a quick appt. We were done by 10 a.m. and were due to the heart center for an ECHO at 11 a.m. We went down to see if they could do his ECHO earlier, which they did. All looks well with his heart. He is feeling good today, so after his appts and lunch, I dropped him off at school for the afternoon. I'm going to pick the kids up after school and I think we will go over and watch cousin Megan's softball game. It is another gorgeous day here today.

Jan

Monday, April 21, 2003 7:14 PM CDT

Things are going really well here lately. Colin has been feeling great. The kids are on spring break all this week. Since things are too unpredictable with Colin's health we couldn't really make plans to go anywhere. We decided to stay in town and do things around here. We went to a Brewer's baseball game on Saturday. Saturday night Grandma and Grandpa H., Mary, Tim, Meg & Ryan all came over here for a cookout. After they left we colored Easter eggs. Sunday morning the kids had fun finding their hidden Easter baskets. The bunny left clues for the kids which led them to their baskets eventually. We spent the afternoon at Grandma L's house. It was so nice this morning to be lazy in our pj's and not have to be anywhere first thing. This afternoon we went to the Betty Brinn Children's Museum downtown with Aunt Peg, Brendan, Jack and their cousins.

Late this morning we went to our local lab for Colin's blood draw. His counts came back really good -- the Prednisone definately did its job. WBC 8.1; Hemoglobin 12.1; Platelets 385 and ANC 4,536!! Tomorrow we will do the oral Methotrexate (40 pills in a 24 hour period, Noon, 6 p.m., Midnight and 6 a.m.), nightly 6MP and on Thursday he will take Leucovorin. We don't even need to go to clinic tomorrow because we did the labs today and last week they gave us our prescriptions he would need this week. HURRAY!! We do need to go on Wed. morning for a few hours for his appt to do the neuro testing for the study he is participating in.

Thanks for your prayers!

Jan

Tuesday, April 15, 2003 10:32 PM CDT

The past couple days have been great here. Colin has felt really good. He was able to be in his Variety Show on Friday night (see picture). Clint, Emma and I enjoyed watching both Kelly and Colin participate with their classes. The b-day party on Saturday was a success. The kids made soda bottle rockets which they launched, we had a Sponge Bob Pinata, and a few other fun things.

I took Colin for his labs yesterday. Counts came back great: WBC 3.1; Hemoglobin 9.2; Platelets 305!! ANC 1,178. Nice to see those platelets.

We went in today for his chemo: 1+ hours pre-hydration; 1 hour of Cyclophosphamide with Mesna; 2 hours post hydration. By 3 p.m. we were ready to go home. What better way to spend an 85 degree day in April!! [Tomorrow it is to be back down in the 40's!] Also this week he is back on Prednisone for 5 days.

2 days of school left this week and then Easter vacation :)

Jan

Thursday, April 10, 2003 10:15 AM CDT

Yesterday Colin was back at school. He stayed the whole day, then had practice for the Variety Show (which is Friday night). He was pretty tired when he got home, so he took a nap. When he woke up at 6, he felt hot -- temp was 103.3! Clint and I took him to the ER for labs and cultures. The labs came back good -- RELIEF -- so he did not have to be admitted. They think the fever is chemo related. This morning it was back down to 99.7. He is staying home and taking it easy. With the Variety Show tomorrow night, and his birthday party (with the boys from school) here at our house on Saturday, we want him feeling GREAT. Thinking positive thoughts here.

Jan

Tuesday, April 8, 2003 5:53 PM CDT

Colin's counts were good enough to continue with treatment this week. We went to our local lab yesterday for counts: WBC 2.7; Hemoglobin: 8.9; Platelets 78; ANC 1,053. This morning we went to Children's for a spinal tap and chemo which is put into the spine to replace the fluid that was taken out. Why a spinal tap? The reason for spinal taps during treatment for leukemia is a preventative measure to keep the leukemia from spreading to the central nervous system (CNS). On Colin's protocol, he will be getting spinals every 5 weeks. Because of the problems he had with the last one, we decided to try this time doing it in day surgery with propofal a wonderful medicine that once pushed into his port, he falls asleep within seconds and remains sleeping until about 30 minutes after the procedure. Colin was a bit nervous about doing it this way. I stayed in the room with him until he fell asleep. They gave him the med, he looked at me with a big smile on his face, then gave me a kiss and fell asleep. What a sweetie! I left the room, a little nervous myself (I'm usually with him for all his spinal taps, it felt strange to leave him). I waited in the waiting area, and it seemed like only about 15 minutes later they came to tell me he was done and I could be with him. I went back to his recovery room and waited for him to wake up. As the nurse predicted he woke up about 29 minutes later. They then moved him back to the oncology clinic for him to recover and have his port deaccessed. The first thing he wanted to do was eat. On spinal days you can not eat or drink until after the procedure, so by Noon he was quite hungry. His back was hurting somewhat, so they gave him a Tylenol. We hung out for an hour or so because he was feeling a bit nauseated and a little lightheaded. I'm thinking he wanted to stay just to play a Rugrats game on PS2 for awhile :)

The spinal fluid looked good today. A relief! One thing that Colin did not get today was his shots. The last time he had an allergic reaction to his L-Asp shots. He is supposed to get a replacement drug called Erwinia. Unfortunately for some reason that drug is in low supply and they did not have it to give him today. Frustrating to say the least! According to other parents of kids with ALL, on my email list, this is also what they have been told. I'm trying to find out more information on this on the internet, but so far haven't see anything about the low supplies of it. I really don't like the idea of taking one of his drugs out of his treatment. Hoping this is just temporary. If anyone has any ideas on this or have heard similar things, please let me know.

Thanks again for your prayers and for your guestbook entries.

Jan

Wednesday, April 2, 2003 5:25 PM CST

Thank you for the nice b-day messages to Colin! We had a great weekend and did lots of celebrating and fun things. I think the picture of Clint and Colin shows just how good of a time we were having :)

Colin was due back at Children's on Monday for a spinal tap and chemo. His counts looked good, except for those darned platelets!! They were down to 40 on Monday. They need to be over 50 to go ahead with treatment. We were sent home and told to have labs done again on Wed. and rescheduled the spinal for Thurs. This morning before school we went and had his labs drawn. A few hours later I got the call that his platelets were 20 -- he needed to come in for a transfusion. [This same thing happened at this point in his cycle the last time]. I called school and told them I would need to pick Colin up at 1:30 -- my only request was that he be able to pass out his b-day treat before I came to pick him up. We made cupcakes with white frosting and green gummy frogs on top :)

Colin was out of school for the past 2 weeks. He went back yesterday for a full day and most of today. He should be able to go the rest of the week. He is so happy to be back there.

He is all juiced up with new platelets and by Monday's labs we hope to see them back up in the range for his spinal and chemo on Tuesday.

Jan

Sunday, March 30, 2003 0:26 AM CST

HAPPY 7TH BIRTHDAY COLIN!!!!!!!!!!!!!!

We love you very much --
Mom, Dad, Kelly & Emma

Friday, March 28, 2003 4:50 PM CST

I thought this article was worthy of sharing here. Encouraging to those of us who have kids getting lots of transfusions: Blood Transfusions Safer Than Ever

Colin ended up with a temp of 101.4 last night. I took him out to the ER and when we got there it was 100. They still had to access his port, do a CBC and take a culture. Colin was feeling fine and his counts were great, so we were able to go home. Arrived back home at 3 a.m. What an exhausting couple of weeks we have had. It is so wet and dreary today, which doesn't help at all. Today Colin is feeling good -- temp is normal. THANK YOU MB for helping me out last night!!!

Jan

Thursday, March 27, 2003 5:36 PM CST

We are home again!! Colin's temp went down last night and stayed down in the normal range. This morning he was feeling good, eating and up and walking and playing again. They kept us a few hours to see if there was any change. Feels great to be home. If all goes well, we hopefully will not be in-patient again for at least 5 weeks.
Jan

Wednesday, March 26, 2003 10:43 PM CST

We are still inpatient. Colin was feeling nauseated this morning and had a high temp all day. This is quite often seen with the chemo he got last night. They are giving him extra fluids, steroid and he is on an antibiotic. They also took cultures to make sure nothing else was going on. We will probably be here for a few more days. We did celebrate Clint's b-day out here with takeout Chinese dinner and cake :)

Thank you to Mrs. Barry and Colin's 1st grade class for all the beautiful cards (they are hanging all over Colin's room) and the Kapla building blocks. We will be busy tomorrow.

Jan

Tuesday, March 25, 2003 9:00 PM CST

We are back in-patient today. I thought Colin's counts would be too low for chemo, but they were good enough to move on with treatment: WBC: 2.0; Hemoglobin 11.6; Platelets 81, ANC 200. We were admitted for 24 hour Ara-C and Doxorubicin. We had a good day -- did some school work, played Monopoly, played Nintendo (I'm getting pretty good at it!) and built a 3D puzzle of an airplane. If all goes well, his chemo should be done by 4:30 tomorrow afternoon. It is Clint's 40th birthday tomorrow. Hopefully we will all be home to celebrate.

Happy birthday Dad -- Love, Colin :-)

Jan

Sunday, March 23, 2003 11:45 AM CST

Colin and Clint came home yesterday morning. Colin's counts have continued to show that they are slowly headed in the right direction. WBC: 1.6; Hemoglobin 10.8; Platelets 47; ANC is up to 96. ANC is still very low, so Colin will be staying here at home until those counts move up. We will go back to clinic on Tuesday to check the numbers again. It is a nice sunny day here today -- 50's. Clint, Kelly, and Colin are working on Kelly's volcano project for school. Her 3rd grade class will be setting off their volcanoes on Friday at school. Colin is building one to set off here at home.

Thank you to Colin's cousin Brendan and his class at St. Jerome's in Oconomowoc for making and mailing such nice cards to Colin. He thinks they are very cool. THANK YOU!!

Jan and family.

Friday, March 21, 2003 9:16 PM CST

Colin is still in-patient. His counts this morning went up a little bit, but are still low. His WBC was 1.0; Hemoglobin: 11.2; Platelets 49 and ANC 40. A few of his other numbers are showing that the marrow is recovering, which is a good sign. They are keeping him over night tonight and hopefully tomorrow we will see continued improvement with the counts, and they will probably discharge him. Colin is feeling really good -- no fevers, lots of energy and happy as ever. This afternoon Grandpa H. came out to the hospital so I could go home for a break and to spend time with the girls. Tonight Grandma, Kelly, Emma and I picked up some pizzas at Pizza Hut and met Clint, Grandpa and Colin at the hospital for dinner. Emma and Kelly were so happy to see their brother again and he was just as excited to see them :) Clint is staying over night tonight and we are all hoping to hear that they are coming home tomorrow.

Thank you for keeping us in your prayers.

Jan

Thursday, March 20, 2003 10:21 AM CST

Colin is still here on the HOT unit. The oncologist just did rounds and because Colin's counts are still quite low, he won't be able to go home yet. This morning's counts are: WBC: 0.7; Hemoglobin 10.9; Platelets 43 and ANC 42. He has not had a fever in over 24 hours. His coughing has decreased quite a bit. He is no longer in isolation -- cultures have come back negative. He will stay on the Cefepime.

Last night a local spa came to the HOT unit and gave chair massages, hand massages and manicures to the parents. It was so wonderful to be pampered.

Will update after tomorrow's rounds.

Jan and Colin

Wednesday, March 19, 2003 8:35 AM CST

Colin is in-patient this week. On Monday after school he started coughing pretty hard. After waking up from a 2 hour nap, his temp was 101.5. After a call to the HOT (hematology/oncology/transplant)unit, Clint took him to the ER. His counts were quite low: WBC: 0.5; Hemoglobin: 6.8; Platelets: 17 and ANC of just 60. They took an x-ray of the chest, started him on an antibiotic (Cefepime) and gave him hydration fluids through his port. They also started the process of having him admitted to the HOT unit. Clint stayed over night with him. I came out on Tues. morning so Clint could go to work. Colin is in contact/droplet isolation, which means he can not leave his room. And any one that comes into his room is to wear a mask and gown. Not much fun when you can't leave the room! However, Eileen, the child life specialist has given us lots of fun things to do while in isololation. We are doing puzzles, clay, markers on the windows, homework, reading and lots of Playstation. I'm getting addicted to Miss Packman on the Gameboy -- my fingers are hurting. :-) Yesterday they took a nose culture -- not fun to have a long q-tip thing stuck as far back as it will go in the nose. The quick cultures have come back negative. We haven't gotten the results from the long ones yet. At Midnight last night his temp was up again, but went back down on its own by 2:30 a.m. This morning it is 100. He is coughing a lot, but it doesn't sound wet at all. Not sure what is going on. Hoping we know soon. I've discovered Colin eats better when I bring food out here. I went to Kohl's last night and stocked up on a few favorites. This morning for b-fast we had toasted english muffins with peanut butter and banana. Much better than hospital food. Whatever it takes :-) Colin did get a platelet transfusion and blood transfusion. I haven't gotten this morning's counts, but am hoping the numbers have gone up.

Please pray that things start improving, that his temp stays down and that we can go home soon. From the sounds of it, it may be a few days. He needs to be fever free for 24 hours.

Jan

Monday, March 17, 2003 8:27 AM CST

Happy St. Patrick's Day :-) Kelly and Colin Patrick are at school all decked out in green today. What a great weekend we had here. 65 degree temps sure does help!! We went to the big St. Patrick's Day parade downtown Milwaukee on Saturday. Yesterday the kids rode their bikes, while Emma (in the jogging stroller) and I did our best to keep up with them. We got a lot of fresh air this weekend. The Pinewood Derby went great -- the boys raced their cars 4 times. Colin's placed 1st in one of the runs and 3rd, 4th and 4th in the other races. I will try to add a picture of Colin with his car and trophy later.

After school today we are heading to our local lab again to check Colin's counts. Hoping they are good enough to go ahead with chemo tomorrow.

Tonight we are invited for a yummy St. Pat's dinner at Mary and Tim's. My parents will be here to celebrate.

Emma is dressed and ready to go for a run. (I'd be ready too if I knew someone was pushing me) Another nice day here today :)

Jan

11 a.m. -- I just found out that Sabrina, my friend's daughter who has been battling Rhabdomyosarcoma since 1998, passed away early this morning. Her family is in my thoughts and prayers as they go through this very difficult time.

Thursday, March 13, 2003 7:39 PM CST

I took Colin to our local lab this morning for a blood draw. Then I dropped him off at school -- even though his platelets have been low, he has had a lot of energy and has been feeling good enough for school. He knows that when his platelets are low, he really needs to take it easy. Around 12:30 I got the call that the platelets were down to 19, I needed to take him to Children's for a transfusion. They ordered the platelets and asked me to have him out there by 2:45. My sister Mary Beth came over to watch Emma and be here for Kelly when she got off the bus. I really don't know what I would do without Mary Beth!! THANK YOU :) I'm so glad we live so close to each other. I picked Colin up at 2 and on the way out to Children's we picked up a Shamrock shake and some chicken nuggets (afternoon snack).

While we were at clinic, one of Colin's good buddies from the hospital came by with his dad. They were getting a tour of the clinic. We were so happy to see them!! Cody has been inpatient since he was diagnosed with AML at the beginning of January. He finally gets to go home tomorrow. It really made my day to see him, and Colin was so excited to say hi to his buddy.

Kathy, Colin's favorite nurse was supposed to get off at 3:30, but since Colin's platelets were not yet up, she waited for them to come. The nurses are so wonderful in the clinic. Finally at 3:45 they were ready. She accessed his port, pushed the platelets in, flushed his port and deaccessed it. We waited around for 15 minutes to make sure he didn't have a reaction, and then we were on our way.

Tonight Colin and Clint went to school to have their Pinewood Derby car weighed in. The big derby is on Sunday afternoon.

Again I ask for prayers for higher platelets. THANK YOU.
Jan

Tuesday, March 11, 2003 12:43 AM CST

This morning Clint, Colin, Emma and I all went to Children's for appointments. We all went to the lab for Colin's blood draw. After Colin had his blood drawn, Emma said "Emma is not doing that". Pretty funny. Then Clint and Emma went to the ENT clinic for Emma's appointment. Colin and I headed to the clinic for his check-up and possible admit for chemo. While waiting for the counts to come, Colin went to the craft room and made a Leprechaun for St. Patrick's day. Soon we got word that his counts looked good -- except for his platelets which were down to 24. This did not surprise me at all since Colin had blood in his urine again this weekend. I suspected they were going to be low. The rest of his counts were: WBC: 3.9; Hemoglobin: 10.2; ANC: 2,800. We will go to the local lab here on Thursday to see where the platelets are at -- if lower, he will get a transfusion. We will try again next Tues. for his chemo admit.

Colin and I then went to the ENT clinic and got there just in time to talk with the doctor. Emma has been snoring pretty much since she was a baby. We have been holding off on having her adnoids taken out. We are hoping she outgrows the problem and won't need surgery. All 3 of us agreed that we would wait it out to see if things keep improving. One less thing to worry about right now.

We came home and Colin got his school uniform on and is back at school for the afternoon.

If you are praying, please ask for higher platelets this week. THANK YOU :-)

Jan

Friday, March 7, 2003 9:08 AM CST

Colin is having a terrific week. He is feeling really good and has been going to school all day on Wed. and Thurs. And is back there again this morning. Feels like somewhat of a normal week here. Emma and I are enjoying some time to just the 2 of us. We are getting more snow today -- finally looks like Winter in Wisconsin. We can go sledding this weekend :) We are approaching the 6 month mark since Colin relapsed. Hard to believe!! It has been a difficult 6 months, but it sure has flown by when I look back at it. 19 more months of treatment to go. Thank you for keeping Colin in your prayers.

Jan

Tuesday, March 4, 2003 1:17 PM CST

Colin and I were back at Children's today. Labs looked good: WBC 3.6; Hemoglobin 12.6; Platelets 112; ANC 1,400. Last cycle at this point in treatment, Colin's liver function numbers were a bit elevated, which concerned me. Today's functions were right in the normal range. After lab we went to the heart clinic for an echocardiogram. Everything looks normal. We then went to the oncology clinic for his checkup and chemo. Today he got a push of Vincristine into his port. Another nice, quick appointment. He will also be taking VP-16 (Etoposide)Etoposide for the next 5 days. Good news: the results from Colin's MRI came back "normal". Normal is good :) Here is a link to the web page with info on the study he is participating in: Study Colin is participating in

The oral methotrexate worked well last week. We didn't have any problems waking Colin up at Midnight and 6 a.m. -- and going back to sleep was no problem. He has not developed any mouth sores which is so wonderful! The oral Methotrexate dose is quite a bit lower than the IV dose that he was getting. The oncologists feel that because of all the problems Colin had with the IV method (low platelets, mouth sores, rash on legs), that the oral will help him stay more on track with the rest of his chemotherapy, thus he won't have as many delays. We want to get as much therapy into him over the 105 weeks that he will be going through treatment.

Thank you for the prayers and nice messages in Colin's guestbook :-)

Jan

Tuesday, February 25, 2003 1:16 PM CST

Colin and I were back at Children's bright and early this morning. He had to be there at 7:30 a.m. for an 8 a.m. MRI to the brain. In his normal brave way, Colin showed no fear and went and laid right down for the procedure. He did not need to be sedated. He got to pick out a movie that he could watch (by a mirror placed above his face in the MRI tube) while the 20 minute procedure was taking place. The MRI is not a normal part of his treatment -- however he was asked to participate in a study. It is a study being done on kids who received treatment on POG 9201 (the chemo protocol Colin followed when he first went through treatment from 97-00). They are looking to see what effects the Methotrexate had on the brain. In addition to the MRI, he will go through various neuropsychological tests (evaluating intelligence, sensory-motor, visual, memory, and language skills, as well as school achievement and personality evaluations).

Today is week 5 of cycle 3 (another cycle completed). We are making a slight change to his treatment. Instead of IV methotrexate, we are doing oral Methotrexate. He has had so many problems after receiving the IV Methotrexate (mouth sores, rashes, etc) that they want to see if he tolerates the oral MTX better. Starting today he will get 4 doses (10 pills each time) of MTX -- at Noon, 6 p.m., Midnight and then 6 a.m. His Noon dose went well :-) 10 down, 30 to go. Then on Thursday at Noon and Midnight he will get a dose of Leucovorin which will chase the Methotrexate out of his system. Amazing how it all works. He will also be taking 1 1/2 6-MP pills every night for the next 7 nights. Good thing he is so good at swallowing pills. We were home from clinic by 11:30 a.m. this morning. Our quickest appointment yet. It was so nice that Colin didn't have to have his port accessed. First time since 9/9. Also it is nice not to have to be in-patient for 3-4 days this week. Lets pray that the oral Methotrexate makes things easier all around. His labs today were: WBC 2.3; Hemoglobin 13.7; Platelets 221 (YAY), ANC 200 (low), APC 667. Since his APC was over 600 we are able to do the treatment this week. Because his ANC is low, he will be staying here at home for a few days.

This weekend Colin's soccer team played in an in-door tournament. He hasn't played soccer since the weekend before he relapsed. He was determined to go play with his team. And he did!! He played in all 3 games. It was so great seeing him out there running and kicking the ball with his teammates. WAY TO GO COLIN!!

Thank you all for your prayers.

Love, Jan and Colin

Saturday, February 22, 2003 10:29 AM CST

I am asking for prayers for the daughter of one of my Parents of Kids with Cancer friends -- Sabrina. I have known Cathy since 1998. Her daughter Sabrina has been battling cancer since 1998 and is not doing very well the past couple of months. Cathy and family would appreciate any prayers -- most of all to make Sabrina comfortable. THANK YOU.

Jan

Tuesday, February 18, 2003 9:41 PM CST

Before I forget -- I want to say a very big THANK YOU to the 8th grade students at St. Joe's Middle School in Appleton, Wisconsin for all of the Valentine cards you made and sent to Colin. What a fun surprise to get all of those in the mail. And to Brad Meyer's (his mother is Clint's cousin)1st grade class at St. Paul's in Franklin, Wisconsin for sending Colin the beautiful get well wishes. It amazes us that children we have never met are sending their prayers and well wishes for Colin from all over the country. We have also received get well cards from Gabby's (her mom is my cousin) class in Chicago, IL; and kids from a school in Alabama (their teacher is an on-line computer friend of mine). And many cards from the students at St. Monica's. THANK YOU ALL!!

I'm happy to say that today's appointment went much better than last week. Today was week 4 of cycle 3. Colin's labs were: WBC 2.0; Hemoglobin 10.4; ANC 1,300 and Platelets 268!! :)So nice to see those platelets moving up.

They accessed his port and put a bag of hydration on for a few hours. By Noon he was ready for his chemo, Cyclophosphamide. This time they also gave him the medicine to protect his bladder, Mesna. The CYC takes about an hour, so Colin and I went to the deli and had lunch. We met another mother with her 5 year old daughter, who were also spending the day in clinic, and ended up going to lunch with them. At 1 p.m. the chemo was done and he was put back on hydration for 2 hours. By 3 p.m. we were ready to deaccess his port and go home. It was a long day, but went pretty quick. My parents are in town for a few days, so they spent the day here with Emma. After Colin and I got home, I was able to run to Walgreens to pick up a few prescriptions for Colin. He is back on Prednisone today for 5 days. The house is stocked with his favorite Prednisone craving foods :-)

Lucky for us, we were not hit with the huge amount of snow that the east coast was. Today when I was driving home it was 40 degrees!! The little bit of snow we have has melted.

Thank you for all of your prayers. We are saying extra prayers for my Aunt Gen who had a stroke last week.

Jan

Wednesday, February 12, 2003 8:12 AM CST

Colin had his appt yesterday. The day seemed to go wrong right from the start. I pulled out of our driveway and spilt my very hot coffee on my lap -- had to
go back home and change quickly. Got out to the lab and sat there for 40
minutes before finally getting in. Very unusual for the lab to be slow like
that. WBC 3.2; Hemoglobin 8.7; Platelets 100; ANC 600. Nice to see those platelets have gone up!! Spinal tap went ok, but not great. He cried most of the time and just
wasn't doing great. Colin has done his spinals with versed and morphine.
The next time we are going to use Propophal which is given by an anesthesiologist in day surgery. He will be asleep for the procedure. They
then gave him his 2 shots of L-Asparaginase, 1 in each thigh. He was crying pretty hard with
those and almost immediately complaining that his legs hurt so bad. Then his
mouth was bothering him. And then the pulse ox monitor started beeping. The nurse was in the room monitoring him and knew immediately he
was having a reaction. A few others came into the room. Colin's entire face
was all swollen up -- his lips were huge. They gave him a shot of
epinephrine and some benadryl into his port. It was a very scary thing to witness. Eventually things settled down and he was obviously doing
better. They gave him a steroid into his port and Zantac. We stayed
until 5:30 p.m. so they could monitor him to make sure all was well. We are giving him Benadryl and Zantac for the next 2 days. And he will no longer get
the PEG shot, he will get something else.

We haven't had a lot of snow here this year, well yesterday afternoon we were finally hit. Left the hospital only to be part of bumper to bumper traffic attempting to get home during rush hour on slippery roads with blowing snow. It took us
about 1 1/2 hours to get home (normally takes 15--20 minutes). We were so
happy to pull in the driveway at 7.

Colin is doing better this morning. He is staying home and taking it easy today. Amazing how resilient these kids are!!

Jan

HOW TO BE A DONOR AND HELP SAVE A LIFE!

Thursday, February 6, 2003 5:22 PM CST

This morning I took Colin to have his labs done locally at the pediatrician's lab, saving us a trip out to Children's. A few hours later I got a call telling me his platelets were 18 -- he needed a transfusion. They put an order in for them and said we could come out at 1. Hoping by Tuesday they are back up where they should be so he can continue his chemo.

Jan

P.S. Happy Birthday to my Dad :-)

February 14 -- Valentine's Day -- is National Donor's Day. Click here to find out how you can help save a life: HOW TO BE A DONOR AND HELP SAVE A LIFE!

Tueday, February 4, 2003 1:54 PM CST

Another week off treatment -- Colin's platelets were back down to 28. The rest of his counts looked good (I'm not sure where I put the lab sheet). We will do 2 more nights of the G-CSF shots and on Thursday go to the lab to check on the platelets again (to make sure he doesn't need a transfusion, they usually transfuse at 20). Prayers for higher platelets on Thursday would be appreciated.

On my way to give blood at the St. Monica blood drive.

Happy 9th Birthday to Kelly today :-)

Jan

Thursday, January 30, 2003 at 10:05 PM (CST)

****UPDATE: 1/31 -- Colin got up this morning and when I asked how he felt, he said "Excellent!!". Oh boy -- I wish there was a carnival at school every day. LOL His temp was 99. He ate b-fast and off he went to school. I called the school nurse at Noon to ask her to check on Colin to see how he was doing. She called me back to say that he said he felt good, and that he looked good. Took his temp and it is still at 99. His teacher said he was having a good day. Makes me happy that he was able to enjoy the day :)********


Colin's platelets finally went up this week. His labs on Tuesday were WBC 2.7; Hemoglobin 9.2; Platelets 104; ANC 1,100. Good enough to go ahead with his chemo: Doxorubicin (which is infused over 30 minutes; and ARA-C which is given as a 24-hour continuous infusion. After his check-up, we were told it might be awhile to get a room in the HOT unit. They accessed his port and got his hydration started. Then Colin and I went and had lunch in the cafeteria. We also had to go to Ultrasound for an ultrasound of his bladder (to check for damage which may be causing the bleeding). Around 3 p.m. a room opened up for us. And by 4 p.m. the Ara-C was started.

Wed. when Colin woke up he felt really good. He wanted to work on his homework, he read 2 Dr. Seuss books to me. I'm so proud of how well he is doing with reading/math and keeping up with all of his schoolwork. He amazes me! Then he wanted to go out and play a video game with some of the other kids. I decided to go get a coffee and take some of our bags to the car since we would be leaving at 4. I was gone maybe 20 minutes, came back and Colin was in his room in bed, not feeling well, throwing up and very warm. That sure came on quick! His temp was 39.8 (103.6). UGH!! I knew we weren't going anywhere. The oncologist asked if Colin has had fevers with his Ara-C in the past. He hadn't up to this point. I was told that fevers are quite common with this chemo. But just to be sure, they drew some blood to run a culture. He said he would be staying another night to make sure all was ok. They gave Colin Tylenol. He slept all day. Last night he was hungry for some McDonalds, so I went out and got some chicken nuggets for him. He ate them, and then was feeling better, sitting up in bed, reading and wanting to go for a walk. His temp was also back down to 37.2 (99). We went to bed around 11 -- unfortunately around 4 a.m. his temp was back up to 103.8. They gave him more Tylenol. The nurse woke me up at 7 to tell me that we had to go down to Ultrasound, this time for an ultrasound of his kidneys (another test to rule out the bleeding problems). This morning Colin was feeling better, but his temp did go up again. The onc came to tell me that the cultures came back negative. They feel it is a chemo fever. Colin was up and walking around and looking good. We were told we could come home, give Tylenol as needed, and call if there are any other changes in Colin. We were home by 2 p.m. Home sweet home :) Tonight Colin is feeling good. He has decided that Cancer is the pits! I agree. This week it is Catholic Schools Week at our school. He missed casual dress day on Tuesday(they normally wear uniforms) and today was wear your PJ's to school day. He was pretty bummed about missing that. But tomorrow is the big Carnival. He is REALLY hoping he can make it for that. Hopefully he will be feeling well. Tonight we started the G-CSF (Neupogen) shots. Colin did very well with it. We put Emla on his leg, Clint holds Colin's hand, and I give him the shot. This med is known to burn when going in, so we do it very slowly. Colin tells me when to go(push) and when to stop, go, stop, go, stop. We are getting the hang of it, and it is going much better than it did the first cycle. No tears tonight.

As far as the bleeding. Yesterday they had a Urologist (bladder doctor) come talk to me; and also a nephrologist (kidney doctor. At this point the thought among all of us is that the bleeding is from one of Colin's chemo drugs, Cyclophosphamide. The next time he is scheduled to get the CYC, he will get a medicine called MESNA. I'm not sure why he wasn't getting this med from the very beginning. The only thing I can see from his protocol is that the dose of CYC he is getting is less than the dose that they recommend the use of Mesna with. They may also do a few other things like more hydration, and there was some mention of a catheter (I cringed when I heard that). I'm hoping it doesn't come to that.

I'm learning a lot as we go along this journey (more than I really care to know). One big thing is staying on top of Colin's treatment as much as possible. As you can see from the links I have put here, it is so nice to be able to sit down at the computer and have all this information at my fingertips. It is also a wonderful support system to have the Caringbridge page and to be able to read about other children going through the same things.

Thank you all for taking the time to sign Colin's guest book. If you are reading, be sure to stop in and say "hi".

Thanks to those who helped out here at home this week.

Next week we are scheduled to go in for a spinal tap with chemo and 2 shots of PEG-L-asparaginase. This all depends on what the counts look like.

Jan

Thursday, January 23, 2003 at 01:48 PM (CST)

We are back home once again. Colin's platelets went down instead of going up. WBC: 2.9; Hemoglobin: 8.3; Platelets: 15; ANC: 2,100. They ordered platelets for a transfusion. This time they premedicated (Benadryl; Tylenol) him to prevent any reaction to the transfusion.

We will try again on Tuesday morning. In looking back at the last cycle, Colin needed 2 platelet transfusions after his Methotrexate -- just like has happened this time. He also had the horrible mouth sores, and a rash on his arms and legs. The next cycle instead of doing IV Methotrexate, we are going to do oral Methotrexate. Hopefully that will make things go smoother.

With all the transfusions Colin has been getting, I thought this would be a good time to ask those of you who can, to go and give blood when you have the opportunity. You can help save a life.

Thank you for your prayers.

Jan

Tuesday, January 21, 2003 at 01:30 PM (CST)

We went to Colin's appt this morning. His labs came back: WBC 4.5; Hemoglobin 9.2; Platelets 21; ANC 4,200. His platelets need to be 50 to go ahead with the Ara-C. They sent us home and asked us to come back on Thursday morning to try again. Let's pray that those platelets climb above 50 by Thursday.

Jan

Sunday, January 19, 2003 at 07:49 PM (CST)

ER repeat on Saturday. Colin still had blood in his urine on Saturday. We called in the a.m. and were told if he didn't have any pain and no clots, we didn't need to go in. Last night around 7 there appeared to be some clots. We called and were told to come in. Clint and Colin went, I stayed home with the girls. They did labs again -- platelets were up to 33. They put him on hydration for a few hours. They also took a culture which will take 3 days to see if anything shows up on it. Clint and Colin were back home by 11:30 p.m. What a weekend! Colin is feeling great -- has a lot of energy and not complaining about pain. I'm going to be asking questions on Tuesday about the blood in the urine. I'm hoping I get some answers. I've done a bit of research on line and will be addressing some of the things I have found.

We are scheduled to be admitted on Tuesday for 24 hour Ara-C (as long as his counts are ok enough to go ahead with chemo).

Jan

Saturday, January 18, 2003 at 08:57 AM (CST)

Late yesterday afternoon Colin ended up having to go to the ER. He had blood in his urine, quite a bit of it. Labs came back with platelets: 11. The rest of his counts looked good: WBC 5.1, Hemoglobin 9.3; ANC 3,700. They ordered up platelets for a transfusion. Clint and I played tag team -- I took Colin to the ER, and around 8:45 Clint came out. I then left to be home with the girls. Clint and Colin were home around 10:30. Colin was coughing when he came in the house and was aggitated and itchy. Lifted up his shirt and he had welts popping up all over (ears, neck, chest, arms). A reaction to the platelets. In the past Colin has not needed premedication before platelets. I called the HOT unit and was told to give him Benadryl -- if things didn't improve in 30 minutes, we were to call again. The coughing stopped and the welts did go away pretty quickly. Next time we will pre-medicate!! This morning he loooks good.

When they did labs yesterday, I asked them to do the liver functions again. They came back quite a bit lower than Tuesday. I was relieved to see that: AST 78 [normal range 23-58]; ALT 394 [norm. 3-35]. Still high, but going down.

Mouth sores are healed. Colin went to school every day last week. Despite the platelet problems, he had a good week and energy level was good.
Jan

Thursday, January 16, 2003 at 09:42 AM (CST)

Yesterday the Child Life Specialist from Children's went to Colin's school to talk to the kids about Leukemia. I went and videotaped it. She did a great job. It was quite interesting -- I think it was even helpful for Colin to understand what is going on. First she asked the kids to list things about Colin -- like how many sisters he has, color of his eyes, what is favorite food and color is, etc. She listed those on the board. Then she asked them what has changed about Colin -- he lost his hair, he wears a hat, he is tired a lot of the time, he misses a lot of school, he has cancer. She told them that the first list will always be a part of Colin. The second list are all things that eventually will go away. She then had this big bone that she was able to open up and show them different cells (felt circles). She told them red blood cells give you energy, white blood cells fight infection and platelets help heal your cuts, etc. and then there are leukemia cells that are "stupid cells" -- the only thing they do is crowd out all the good cells. So she started dropping the red and white blood cells to the ground and soon there was mostly purple leukemia cells left. That is what is happening with Colin, and that is why he is tired a lot of the time. She explained how the medicine Colin is getting is slowly getting rid of the leukemia cells and eventually the good cells will come back. Also while the chemo is getting rid of the leukemia cells it is also killing other fast growing cells -- like the cells that make hair grow. That is why his hair falls out. She had a doll that she was able to take the hair off of. Also on the doll was a port in its chest -- she showed them how medicine goes into the port. She then let Colin carry the doll around to let the kids feel the port.

She explained the importance of washing hands, and being careful not to sneeze or cough on Colin. Then she asked them "If Colin sneezes on you, will you catch leukemia". Several of the kids raised their hands and said "yes". Wow, I was surprised by that -- something I would have never thought they were thinking. She assured them that you can not "catch" leukemia. They can hug Colin and they won't catch it.

She did a really good job of explaining it in very simple terms. The teacher was very thankful to have her come do that. She gave the teacher a couple of books to read to the class, and also a guide for teachers of kids with cancer. Here is a link to one of the books: Oncology, Stupology, I Want to Go Home!

She then went to the other 1st grade class, and then Kelly's 3rd grade class.

I would recommend this for anyone who has a child with Leukemia that is in school.

Tuesday, January 14, 2003 at 09:02 PM (CST)

Cycle #3, Week 1 of 5. Colin's appts started at 1:30 this afternoon. Normally we go out in the morning for his treatments, but he had to have an EKG, which they couldn't schedule until 2 p.m. Turned out well -- he was able to go to school all morning, I picked him up at 1 and we headed out. First we had to stop at Kopp's Frozen Custard for a stawberry shake for Colin :) First stop was labs, then down to the heart center for the EKG. With Colin's more intense therapy, they do EKG's the first week of every other cycle. According to the technician, years ago they saw heart problems in many patients getting chemotherapy. Now the medicines are better and they don't see as many problems. Today things looked good. We then headed to the clinic and waited for Colin's counts to show up in the system. His WBC was 4.5; Hemoglobin 10.4; Platelets 74; ANC 2,970. Kathy his nurse got the go ahead to access his port and give him his chemo -- a push of Vincristine. They also gave him some Morphine in his port. He has been having mouth sores since Saturday and has been pretty miserable with them. The Morphine definately helped. As part of this week's therapy, Colin will do 5 days of VP16 (a/k/a Etoposide). He will start that tomorrow.

Some numbers in his counts came up that I am concerned about -- his liver functions. The AST was 458 -- normal range is 25-38. The ALT was 804 -- normal range is 3-35. They told me that this is sometimes seen after getting the Methotrexate. His numbers should be going back down by next Tuesday's labs. I hope so!! I'm going to do some more research on that tonight.

Tonight while making dinner, I received a call from someone from the Nintendo company. I almost hung up thinking it was a telemarketer. Turns out that my neighbor (Dallas' Mom) emailed Nintendo to tell them that Colin lost his Game Boy Advance out at the hospital. I had no idea she wrote them. Well they called me to ask for more details. They said that they wanted to send Colin a new Game Boy Advance!! Amazing. Colin is one happy boy.

Tomorrow, Eileen, a Child Life Specialist from Children's is going to the kids' school. She is going to first talk to Colin's class, and then the other 1st grade class. And finally she will go to Kelly's 3rd grade class. She will be showing the kids in simple terms all about Leukemia, and answering any questions or concerns they may have. Colin is excited to have Eileen come to his school. He thinks she is pretty cool!! She makes hospital stays a lot of fun for the kids.

Another week done . . . slowly but surely we are getting there.

Jan

Friday, January 10, 2003 at 09:48 PM (CST)

Colin's in-patient stay went well. He has now finished his 2nd full 5 week cycle of treatment. We went to clinic on Tuesday morning for labs, those came back good: WBC 5.2; Hemoglobin 12.4; Platelets 290. Colin was on the steroid Prednisone last week for 5 days, which helps raise the counts. They started him on hydration. He was complaining that his left calf was hurting. They wanted to rule out a blood clot, so sent us down to radiology for an ultrasound of his leg. That turned out fine -- no blood clot. Later in the week they had a physical therapist come to visit us and show us some exercises Colin should do to stretch his legs. We will now be doing those daily. We went back to clinic and were told a room in the HOT unit was ready for us. He was on hydration until 6, and then the Methotrexate was started for 24 hour infusion.

This week Colin was quite active, and spent very little time in his room. He wore me out!! We worked on homework together, and he also went to school a few times. In the play room he started working with clay and ended up making a lot of different clay art. Before he knew it, he was getting offers to buy his creations. He ended up coming home with $9! He also met a new buddy, 9 year old Cody who was recently diagnosed with AML, another form of leukemia. They spent quite a bit of time together playing with Cody's race car track and cars, and Nintendo. He also played a lot of pool -- I showed him all my moves :)

After the methotrexate ended, they gave him post hydration. This time they gave him more hydration, to hopefully prevent some of the problems he had the last time (mouth sores, rash). The last 2 nights were exhausting because Colin had to wake up every hour to go to the bathroom. He also had to take his 30 6MP pills on Wednesday night, 10 each at 7:20 p.m.; 10:20 p.m. and 1:20 a.m. He was very cooperative with all of those! Last night they checked his levels to see if we could go home -- the number needs to be below 1.0. It was 2.0, we had to stay.

This morning they drew another level right away, and at 10 we were told it was 1.0 -- we could go home. I was happy to hear that. Colin was a little bummed that he had to leave his friends. I reminded him that we will see his friends again in clinic and in the hospital, so that helped. We made the rounds to say goodbye to everyone, and we were on our way home.

Thanks to those who visited us at the hospital this week: Aunt Peg and cousin Jack -- thanks for the treats and for spending the morning with us.

Grandma L., thanks for coming out to visit and bringing Colin McDonalds for lunch :-)

Uncle Tim, Ryan and Megan -- thanks for bringing Emma and Kelly out on Wed. afternoon. And for treating us all to a pizza party.

Soccer Coach Paul C - thanks for your visit yesterday afternoon. Colin had fun putting together the Lego Bionicle with you.

And to those who helped us out at home. Mary Beth for taking over with Emma and Kelly during the day. I honestly do not know what we would do without you. We feel so blessed to live so close to you, Tim and the kids. It was also nice to come home today and find Grandma and Grandpa H at our house for a visit.

We also are still receiving home cooked meals from our school families every Tuesday and Thursday. Clint and the girls enjoyed a great meal on Thursday.

Most of all -- we are very thankful for all of those who are telling us that they pray for Colin every day. THANK YOU!!

Jan

Monday, January 06, 2003 at 05:09 PM (CST)

Today I ask for prayers for the families of 3 children who have lost their battle with ALL in the past 2 weeks: Quito, Sarah and Janie. It just isn't right!! The cure rate for leukemia has skyrockted in the past 20 years, but it is not good enough.

Colin is scheduled for an in-patient stay starting tomorrow. We will most likely be there until Friday. Will update when I can.

Jan

Tuesday, December 31, 2002 at 06:03 PM (CST)

Posted by Clint (Colin's Dad): Because today is New Year's Eve and I had off of work, I took Colin in for his chemo. This was a treat for me, because as much as I want to, due to my work schedule, I can't be there for many of Colin's routine chemo treatments.

We arrived at Children's Hospital at 8:30am. On the way, we listened to Colin's new CDs, including the Lilo & Stitch CD and a mix created for Colin by his cousin Vince. It includes a few "old" Rock & Roll songs, and it is really fun to watch Colin as he learns to enjoy music.

Once at Children's we got our outpatient room and labs were drawn and hydration was started. We got a coffee and a hot chocolate. Before we knew it, his labs came back. They were: WBC 1.7 (low), Hemoglobin 11.0 (low), Platelets 511 (high), and ANC 300 (low). However, another count (APC) was within the required range, so it was agreed his chemo for the day would go ahead as planned. After a while, his pre-hydration was complete, and by 11:15am he started his CYC. This took about 40 minutes.

After the CYC, we started post-hydration and Colin and I went to the dining facility for lunch. His eyes were bigger than his stomach, as he fixed himself a Ham sandwhich (a new favorite), but didn't each much.

When we returned from lunch, Colin and I met a new friend, Jason, who's sister is a patient at the hospital. We played Super Mario for more than an hour. Jason was quite a pro, and we learned a lot.

By 2pm, we were discharged. Colin did really great at the hospital today. On the way home, we stopped at the grocery store (not the brightest move on New Year's Eve afternoon!). Colin felt a little shakey when we got home, but has since recovered fully and seems to be primed for a great New Year's Eve celebration (here at home), playing with his sisters, parents, and his toys from Santa :-) He also seems primed for a great 2003 and has recently been asking about playing soccer this spring!

To everyone who has been with us during this journey -- in body, mind and spirit -- we wish you a Happy New Year! 2002 was not easy for us, but if it was a grey cloud, it surely had it's silver lining too. We are so blessed as a family to have each other and the support of our extended family, friends (online friends too), church, school, work and so many others. We thank you so much for your help in 2002 and we look forward, with you, to a bright, HEALTHY, and happy 2003!

Monday, December 23, 2002 at 10:31 PM (CST)

Because of the holidays, we scheduled Colin's appt for this morning instead of his normal Tuesday. We knew he was going to get chemo in his port, so we went right to clinic to have his port accessed and a blood draw done from the port (instead of his arm). They then started an IV of hydration to get him ready for his chemo. A resident came in and did a thorough exam of Colin. Funny thing we found out from the resident is that he grew up in Glendale. After talking further, we discovered he grew up on our street and his mother still lives here. Small world!! He told Colin he will come visit him over the holidays :)

The labs came back pretty low: WBC: 1.1; Hemoglobin 8.1; Platelets 34; ANC 300. Too low for treatment today. They deaccessed his port and sent us home for a week off. I don't think we will ever figure out the pattern of these numbers! Just going with the flow, one day at a time.

To those in PDC this week -- we hope you are all feeling well. We will be calling on Wed. to see how everyone is doing before making the trip.

Merry Christmas to all.

Jan, Clint, Kelly, Colin & Emma

If you have a child with cancer, be sure to go to Candlelighters to request one of the new books that were just released: The Amazing Hannah, Look at Everything I can do (a book for children ages 1-5) and Chemo, Craziness & Comfort, My Book about Childhood Cancer (for children ages 6-12). They are free of charge for families of kids with cancer.

I found this article hard to stomach this week. How could a mother do this to her child? Mother Fakes Daughter's Cancer

Tuesday, December 17, 2002 at 02:47 PM (CST)

Week 3 of cycle 2 was completed today. We went into clinic this morning. I expected to hear that Colin's counts would be too low for treatment. Last time at this point in treatment, he was in the hospital with a fever and low counts. Surprise, surprise -- the counts today were: WBC 8.7; Hemoglobin 7.8; Platelets 90; ANC 5,800. Colin has been doing the G-CSF shots every night for the past 5 nights and they have done their job of bringing the counts up. He can now stop the shots this cycle. We went ahead with his spinal tap with Methotrexate and then 2 shots of PEG-L-Asparaginase in his thighs. After the spinal tap he had to lay flat on his back with his head lowered down for 30 minutes. Then we were able to go home. He is resting on the couch watching the Rugrats in Paris movie. I gave him a Zofran for the nausea he has been having.

We have had a good week here. Last Thursday Colin went to school and stayed there the entire day. It was his first FULL day of 1st grade this year!! He did the same on Friday and again yesterday.

On Saturday Colin (and family) were invited to take a trip to the North Pole. We went to the airport and boarded a plane that took us to the North Pole to see Santa. Amazingly, it only took us about an hour to get there via military plane. And for those who were not too thrilled with the idea of going on the plane (Colin), they went via bus :) What a great time we had. How did Santa know how much Colin loves Legos? We discovered today that the Lego Racers are awesome on the long hallways in the clinic. We recommend them for all Lego fans. Kelly was happy to get a latch hook rug kit. And Emma is happy as can be watching her new Barbie Rapunzel movie.

Next week we are schedulued to go to Clinic on Monday instead of our normal Tues. appt. We hope to get treatment done on Mon. so we can enjoy the holidays.

Thank you for continuing to keep Colin and all of us in your prayers.

Jan

Wednesday, December 11, 2002 at 10:21 PM (CST)

Finally Colin's counts were good enough to continue on with his treatment. I have to admit we enjoyed having 2 weeks off of drugs. Colin has been feeling quite good and very energetic. Yesterday we went in, his counts were: WBC 2.4; Hemoglobin 9.0; Platelets 197; ANC 700. They accessed his port and we were ready to be admitted. We had to wait in the clinic until a room opened up for us on the HOT unit. Around 3 p.m. we were able to go down to our room. He first got his 30 minutes of Doxorubicin (Red Mountain Dew as we have now started calling it) and then they started the Ara-C for 24 hours. They also gave him Zofran to help with nausea. He is also getting steroid eye drops 4 times a day to help keep his eyes from irritation from the Ara-C. At 5, Colin's cousin Megan and Uncle Tim came out for a visit. They brought a Pizza Hut pizza with them for dinner. I left to go home for a few hours, so I could go to Kelly's school Christmas concert with Clint. It was a nice program. We missed seeing Colin with his classmates. I was back at the hospital at 9 p.m. Colin and Uncle Tim were playing a boxing game on Nintendo. After Tim and Meg left, we played a few boxing games, then got ready for bed. Colin woke up at 2:30 feeling nauseated. We called the nurse in, and she gave him more meds to help with the nausea. We then slept in until 8. Today Colin felt ok, but not great. He didn't want to eat. He did go to school for a little bit, then came back to the HOT unit and did an art project in the playroom. Around 1 he was tired and wanted to rest. He fell asleep, I read a few pages of my book and ended up closing my eyes for a nap as well. At 3:15 his nurse came in and flushed his port and took it out, and we were able to pack up and go home.

Tonight he is doing well. The Ara-C is the chemo that bottoms out his counts, usually in 5-7 days. We need to watch him for a fever over 101.5. Tomorrow night we will start the G-CSF shots again which will help the cells recover.

Thank you Uncle Tim and Megan for staying with Colin so I could leave for a few hours. Thank you Mary Beth for being with Emma and Kelly on Tuesday; and Barb for watching Emma all day today. We are lucky to have family so close.

Week 2 of cycle 2 is finally done!!


Jan

Tuesday, December 03, 2002 at 02:42 PM (CST)

We were scheduled to be out at Children's for 9:30 a.m. labs this morning, and an in-patient stay for chemo. Made all the arrangements for the girls, packed up our bags and headed out to the clinic. Colin has been feeling good the past couple of days. Mouth sores cleared up. Ankles cleared up. Energetic. Boy was I shocked to hear his counts were not high enough to go ahead with chemo today! His WBC is 0.9; Hemoglobin 7.5; Platelets 32; ANC 100. So they sent us home for another week off treatment. We are hoping that the low counts are due to the radiation he got a few weeks ago. Regardless, this has been very frustrating. Margaret, his nurse practitioner, did tell me today that they have found that most kids on this protocol tolerate the chemo better after they have been on it for a longer period of time. Time will tell. Please say a prayer that Colin's counts climb in the next 7 days and he can start up his protocol again. We are finding out quickly that we can't really plan ahead for anything at this point. Definately a day by day journey.

We have purchased a Childhood Cancer gold ribbon in Colin's honor to be placed on the National Childhood Cancer Awareness tree in Washington DC. The lighting ceremony for this tree is Friday, December 6. Childhood Cancer Awareness Christmas Tree

Thank you for continuing to keep Colin in your prayers.

Thanks also to Chris, mother of Ronnie (Gooch) who is another little boy with ALL. Chris has been helping me with jazzing up the web page a little bit. THANKS.

Friday, November 29, 2002 at 02:01 PM (CST)

We enjoyed our Thanksgiving meal with family yesterday. Last night however Colin had another bloody nose and at 4:30 this morning his lip started bleeding again. We called the hospital. Since the bleeding seemed to be under control, we decided to take him in at 8 this morning to the clinic. Clint is off today, so he took Colin out first thing. As expected, his platelets were quite low again and so was his hemoglobin. They gave him a platelet transfusion (15-20 minutes) and he is now getting a blood transfusion (3 hours). So much for a break!

We have purchased a Childhood Cancer gold ribbon in Colin's honor to be placed on the National Childhood Cancer Awareness tree in Washington DC. The lighting ceremony for this tree is Friday, December 6. Childhood Cancer Awareness Christmas Tree

Thank you for continuing to keep Colin in your prayers.

Thanks also to Chris, mother of Ronnie (Gooch) who is another little boy with ALL. Chris has been helping me with jazzing up the web page a little bit. THANKS.

Jan

Tuesday, November 26, 2002 at 02:27 PM (CST)

We went to the clinic this morning -- Colin's ankle looks better today, it definately has not gotten worse. I'm relieved about that. The next time he gets the Methotrexate they will keep him on post-hydration longer (he was only on it for 24 hours the last time). They think that will help eleviate the mouth sores and rash/soreness to the legs and ankles. I hope that is all it is. For now we will enjoy a week off of chemo and have fun celebrating the holiday with family.

I got on the treadmill this morning and ran 3 miles. Poor thing was starting to collect dust. I know how good it is for me to use as a stress reliever, so hopefully I can become more consistent with it.

Jan

Monday, November 25, 2002 at 01:58 PM (CST)

The mouth sores have cleared up and Colin is eating and drinking and talking again :) Last night I took him to the ER because of a swollen ankle w/pain and also because he had a few bloody noses this weekend. His platelets were low -- 21 (compared to 214 last week. They sent us home and told us to call this morning and get in to the clinic for a platelet transfusion. We went in at 11 for platelets and an exam of his ankles. Dr. Camitta looked at Colin's ankles. They aren't really sure what to think -- probably chemo related. They outlined the red area with a pen so we could see if it is getting worse. Tomorrow we will go in for a recheck. He was scheduled to go in-patient tomorrow for Ara-C, but they cancelled that due to low platelets. He will have a week off of chemo.

Happy Thanksgiving! This year we have so much to be thankful for. We thank all of our family and friends for their support and prayers during this difficult journey. We are thankful for the doctors, nurse practitioners and nurses at Children's Hospital. We are thankful for the advances in treatment for this horrible disease.

Jan

Thursday, November 21, 2002 at 12:58 AM (CST)

This week had been pretty crazy here. Over the weekend Colin started getting some pretty painful mouth sores (common side effect of chemo). He has been swishing/rinsing/gargling 3 different kinds of mouthwashes. I took him to the clinic on Monday because he had a rash on his legs. They did labs to see if his platelets were low. They came out fine: WBC 2.6; Hemoglobin 11.9; Platelets 214; ANC 1,500. The rash is a "chemo rash" from the Methotrexate. I am giving him Claritin for that. Tuesday we had to return to clinic for his next dose of chemo -- a quick push of Vincristine into his port and a 5 day prescription for VP-16. They also gave him Morphine to help with the mouth pain. The sores seem to be finally clearing up. He was eating Gogurts and drinking strawberry milk yesterday and today. And for lunch today he requested hot dogs and beans. I was happy this afternoon when he asked when his friend Dallas would be home from school. He wanted to go visit him. I think it was good for him to get out of the house to play with a friend for a bit. It made my day :-)
Jan

Thursday, November 14, 2002 at 10:48 PM (CST)

The 24 hour Methotrexate infusion went well. No problems at all. Colin has been active, eating well, and meeting lots of new friends that are battling various types of cancers and one little boy with sickle cell anemia. Last night after the Methotrexate was done, they put him back on hydration. At 8:30 he had to take a drug called Mercaptopurine (6MP) -- he had to take 10 pills! He did it with no problem. He had to take 10 more at 11:30 p.m. and 10 more at 2:30 a.m. 30 pills in a 6 hour period. He is quite the trooper when it comes to taking pills. It wasn't easy waking him up for the last 2 doses. I can't imagine having to wake up and take all those pills. He did great!!

Today was Colin's final day of radiation :) The Froedtert staff gave him a certificate congratulating him on finishing. Another patient gave him a congratulations balloon and some dolphin gummies. During the past 12 days of radiation, he was the only child among many adults getting radiation. I know he touched the hearts of many of those people. They wished us well as we were leaving.

Colin had been telling people all day that we were going to have a "graduation" party. We had Pizza Hut deliver some pizzas to the hospital. I went to Kohl's and bought some chips and dip, peanuts, carrots, Mug Rootbeer, licorice, cookies, and skittles. We invited the nurses and any patients/parents that wanted to join us. Clint and Uncle Tim joined in the fun :) A few of the kids who haven't eaten in a few days were eating pizza. Their nurses were very happy.

At 6 Colin's nurse drew blood to check his Methotrexate levels. His number needs to be below 1.0 in order for him to be discharged. An hour later the nurse came and told us his level was .09 -- we could go home. What a wonderful surprise. I quickly packed our bags and loaded up the car. Colin's port was de-accessed. We said goodbye to his new friends and his favorite nurses.

Feels wonderful to be home. Colin has now finished his first 5 week cycle. We now have an idea of what to expect after each week's treatment. We realize this is going to be a tiresome protocol to follow. We are so lucky to have the support of family and friends to help us out. We also feel blessed to live as close to Children's Hospital as we do.

Thank you for your continued prayers for Colin.

Jan

Wednesday, November 13, 2002 at 10:14 AM (CST)

Colin is in-patient this week at Children's for his week 5 chemo. We were at clinic yesterday for labs at 8 a.m. All the numbers looked great: WBC 5.1; Hemoglobin 11.8; Platelets 385, ANC 3,800. They started him on an IV of hydration right away. His numbers (urine test) need to be at a certain level before they can start the Methotrexate. It took until 7:30 p.m. last night for him to finally be able to start the chemo. He is on Methotrexate for 24 hours. After that he will get post-hydration until his numbers are in the range they need to be. We are hoping to go home Friday.

Colin is feeling great today. Woke up at 6 a.m. wanting sausage/bacon and french toast for b-fast. We had to wait until 7 a.m. to place our order. At 9 a.m. I took him to the hospital school. He will stay there until 11:30. After dropping him off, I went outside for a run. It is a gorgeous day here, decided I could use some fresh air. I ran for 40 minutes. Came back, showered and threw a load of clothes in the washer (feels like home!! :-))

Things are going well here. Just 2 days left of radiation.

Jan

Tuesday, November 05, 2002 at 09:36 PM (CST)

Well I just typed up today's journal, and for some reason I lost all of it!! I will try again . . .

Today was week 4 of Colin's 5 week cycle of chemo. Each week for 5 weeks he receives a different type of chemo, then after 5 weeks, we start back at week 1 again. This goes on for 105 weeks.

Labs today were great: WBC 4.7; Hemoglobin 9.9; Platelets 611; ANC 3,000. Colin is very energetic and feeling and looking wonderful. He has had quite a cough for over a week now. They decided to do another x-ray to make sure things were ok. Nothing showed up. Tonight I haven't heard him cough at all, so I'm hoping it is on its way out.

The drug he got today is called Cyclophosphamide (CYC). It can cause damage to the kidneys, so the first thing they need to do is make sure the patient is properly hydrated. They hooked him up to a bag of hydration for about 2 1/2 hours. By Noon his levels looked good enough to start the CYC. That is infused into the port over 30 minutes. They gave him an anti-nausea med to help keep him from getting sick. He didn't have any problems with it today. Also as part of his week 4 drugs, he is now back on Prednisone for 5 days this week. Glad it isn't for 29 days again!! I have stocked the cupboards with his favorite snacks.

After chemo, we walked over to Froedtert for radiation. Today was day 5 of 12. Colin has done really great with the radiation, and so far has had no problems. Clint and I have our moments of worry over the long term effects of the radiation. But we know that radiation is the only way known to treat this area where the leukemia has returned.

Colin was back at school on Monday for almost a full day. He stayed until 1:15 p.m. His longest day yet of 1st grade. His teacher told me that he had a great day, and by the smile on his face, I could tell he did :) We are keeping up with his math and reading worksheets here at home and at the hospital when he can't be in school. I'm glad it is first grade work we are doing!!

Kelly and Emma are doing great. Kelly just finished up her fall soccer season. They ended the season with a win. Yay Wildcats!!

Thanks to those who helped us out this week. Thank you Mary Beth!!

Jan

Wednesday, October 30, 2002 at 07:56 PM (CST)

Colin started his radiation today. He was very brave with the procedure. Today was a very difficult appt for me. Clint met us there for the appt. I'm glad he was there to be the funny guy for Colin. We had to leave the room, as a big thick elevator like door shut behind us, leaving Colin in the room all by himself. We were able to watch him on a tv monitor, and Clint talked to him and joked with him by talking into a microphone. In less than 1 minute he was done and we were able to go back in with him. 1 down, 11 more to go.

Jan

Tuesday, October 29, 2002 at 10:54 PM (CST)

This morning we were up bright and early. We had to be ready to leave the house by 7:30 a.m. for Colin's appts. Before leaving we put Emla on his port and on his back where his spinal tap would be. Emla is a cream that numbs the area you apply it to. It is a wonderful thing for kids who have their port accessed, spinals, bone marrow aspirations and numerous shots. We love Emla!! We arrived at Children's at 8 a.m. They accessed Colin's port and drew blood from that for his CBC. They only access his port when they need to give him chemo, or meds. This time they needed to do it for the morphine and versed they give him when he has his spinal tap (when he has his spinal tap, they take fluid out of the spine, and then replace that fluid with chemotherapy. It is a preventative measure to keep the leukemia from entering the central nervous system). They also gave him Zofran, an anti-nausea med. The labs came back -- I don't have the print off here at home, I left it at the clinic. Will get it next week. I did write down the WBC: 26.2 and ANC: 13,560. Amazing how high that G-CSF shot boosts those counts. By next week those numbers will most likely be back down to their "normal" range. Finally around 11:30 Sara, one of the nurse practitioners came in to give Colin his spinal tap. He was a little concerned that Margaret, the nurse practitioner that has done all of his procedures the past 5 years, was not doing it today. I reassured him that Sara was going to be gentle. He did great, as usual. The Versed makes him groggy, and also makes him forget what just happened. After the spinal, 2 nurses came in and gave him his shots of PEG-L-asparaginase (a description of this chemo can be found in the link I posted below). He gets a shot in each thigh, which they do at the same time. Again, thanks to the wonderful Versed, he did not remember getting his shots. After a spinal tap, they have the patient lay flat on their back with the head of the bed down a bit. He has to lay like that for 30 minutes. He was really tired, so we let him sleep as long as he needed to. Colin has been complaining that his right side/chest/rib area hurts. They decided to do an x-ray to make sure all was ok. After his rest we headed down to radiology for a few x-rays. Those came back ok, nothing showed up. They think the soreness is from the coughing he has been doing the past couple of days. At 2 p.m. we went from Children's Radiology dept. over to Froedert's Oncology Radiation Department for his radiation simulation. He met the doctor again, and also the assistants that will be helping with his radiation. They showed him the table he would be laying on, how he would have to lay there, and explained how the procedure would be. Colin was very calm about the whole thing, and doesn't really seem worried. He starts radiation tomorrow and will have 12 days total (Wed-Fri this week) (Mon-Fri next week) and (Mon-Thurs)the following week. We have been told the total appt time is 15 minutes, and radiation is about 1 minute.

Tonight we carved pumpkins. They turned out quite cool.

It is so great to read all the messages in Colin's guestbook. Thank you all for your prayers and wonderful messages!! We really enjoy checking it out each day.

I want to say thanks to one of my good friends, Kathy S. She put a call into the Green Bay Packers. Within 2 days a package arrived for Colin. They sent him an autographed photo of Brett Farve, a nice letter and the team creed. Very cool. Last week another package arrived. They sent him a Packers fleece hat -- perfect for winter -- a baseball cap, stickers and pencils, and a card signed by Mike Sherman, Bob Harlan and Ron Wolf!!! WOW -- thanks Kathy. Colin really was thrilled with all of that.

Jan

Sunday, October 27, 2002 at 01:46 PM (CST)

Colin was discharged from the hospital this morning. The labs they took this morning came back really good. After 10 days in a row of the G-CSF shots, they have done their job of helping the numbers rise. WBC: 12.2; Hemoglobin 10.4; Platelets 133; ANC 4,800!

Today is Trick Or Treating. Clint, Kelly, Colin and 2 classmates are going to a few houses in the neighborhood. Clint and Colin are pirates and Kelly is a glam rock star. I'm here at home handing out candy.

Thanks to everyone for your help this week. It was a long, rough week for all of us. We couldn't have done it without all the support people we have in our lives. THANK YOU!!!


Jan

Saturday, October 26, 2002 at 08:38 PM (CDT)

Colin is still in the hospital. We are waiting for his counts to climb up. They would like to see his ANC at 500+. Today his counts have climbed: WBC 2.5; Hemoglobin 10.8; Platelets 38; ANC 200. [for reference, his ANC was 0 all week until Friday when it finally budged to 16]. We are hoping he only has another day or 2 in the hospital.

Emma is enjoying the weekend with Grandpa and Grandma H. Kelly and I are having a fun girl's weekend here at home. Clint and Colin are playing some marathon games of Monopoly and watching guy movies :) We are all happy that we can set our clocks back an hour tonight and sleep in a little longer in the morning.

Will update when Colin is back home.

Jan

Wednesday, October 23, 2002 at 05:51 AM (CDT)

[The following journal entry is being made by Clint.]

I'm writing this journal entry because Jan has not had access to a computer for a few days. She's been staying out at the hospital with Colin.

On Monday nite when I got home from work at about 6pm, Colin was upstairs in our bed. He had been up there since his G-CSF shot, watching some television. We were excited about having dinner together as a family, especially since Jan's parents were joining us from out of town. However, when I talked with Colin, I felt he was warm. We took his temp, and it was 101.3. This is the "magic" number at which our Children's Hospital HOT unit (Hemo, Onc, Transplant) has asked us to call them. Sure enough, they wanted us to bring him into the ER as quickly as possible. Jan and I wolfed down our dinner (well, at least I did), and we got out to the ER by about 7:30pm. There, they accessed his port, drew some blood, got him on saline, and did some chest x-rays (as he also had a cough). They also checked out some of the mouth sores Colin has been having (which are very common in chemo treatment). During all this, Colin was a real trooper, but also very quiet. The ARA-C (given 10/15) has really knocked his blood counts down, and he has been low on energy. By 8:30pm we learned we'd be staying in the HOT unit for at least a day or two. They switched him from saline to glucose and started him on an antibiotic, and we moved to a HOT unit room. There, they started a platlet transfusion, as his counts were very low. Once Colin was situated in his room and bed, and Jan was set, I left to go back home. This is always a hard thing for a parent to do. We are blessed in so many ways... Children's Hospital of Wisconsin (CHOW) is such a good hospital for Colin's treatment, they are so close (15-20 minutes from our home), both Jan and I are eagar to be involved in as much of Colin's treatment as possible, and we have so much support from family, friends, school, church and work (not to mention our online support groups :-). BUT, I still have to work and Colin's sisters, Kelly and Emma, still need their parents (and brother). So, for this situation, we decided Jan would stay at CHOW overnite with Colin so I could get the girls ready for school in the morning and then head off to work. Still, it is difficult to leave them there. I finally did, and there I was at 11:30pm at the local Kohl's buying diapers :-) We were so fortunate to have Jan's parents available to stay with the girls.

On Tuesday, of course, we overselpt :-) But, I got Kelly off to school (with the help of Grandpa driving her), all packed for the day and her soccer game afterwards. I worked, but made it to CHOW by about 5pm (with McDonald's chicken nuggets, Colin's favorite, in hand). Colin was still quite pale and weak. However, his platlet count was responding quite well, jumping from 6 to 66 then down to 53 during the 20+ hours I was away (the drop from 66 to 53 is normal after a transfusion). After a short time, Colin did start talking a bit and he did eat most of his dinner, which was a good sign. Jan was holding up fine, and was actually excited about being able to read quite a bit of a new book (a stay at home Mom of three gets few chances to sit down and read a book). So, after an hour or so, I left again to get back home. As I was leaving, Colin was getting a transfusion of red blood to try to increase his hemoglobin count and give him a bit more energy.

Unfortunately, Kelly's soccer team lost :-( But, we did have a very nice dinner provided by one of the Mothers at our church/school. Jan's parents were able to stay with Emma all day. Again, we are so blessed.

As I write this, it is 6:20am and it is time to get the house going: trash out; girls up, fed and dressed; and me ready for work. The weather here has been unseasonably cold for nearly two weeks, and grey. That doesn't exactly help cheer any of us up, so we have to look elsewhere for some sunshine... for me, the smiles of Emma and Kelly go a long way, so I do tend to tickle and play with them a lot :-)

Hopefully, Colin's counts will be trending up today and we can look to get Jan and him out of the hospital late today or on Thursday.

I'll write more tonite or tommorrow if needed, but hopefully your regular writer, Jan, will be back soon.

And that's the way it is (I've always wanted to end an article with that famous line).

-- clint

Thursday, October 17, 2002 at 10:30 AM (CDT)

We were back on clinic on Tuesday late morning for labs and a checkup. Labs were as follows: WBC 2.6; Hemoglobin 7.1; Platelets 214; ANC 2,100. Hemoglobin was down again, so Colin would need a blood transfusion. His counts were good enough to continue with chemo. The clinic started the process to get us admitted to the hospital. The oncology clinic is located in Children's Hospital -- it is on the 8th floor. When we are admitted, we go to the 5th floor. We were told we would have to wait for a room to open up. Around 12:45 Clint arrived at the clinic, and we were walked over to Froedtert Hospital to the Radiation Oncology department. We had a consult with them to set up Colin's radiation appts. Colin will go through 12 days of radiation to the testicles. He will be starting that at the end of October. The procedure itself will take at the most 1 minute. After our consultation we walked back to Children's Hospital (Froedtert and Children's Hosp. are connected, so we were not walking outside). We went back to the clinic to wait for our hospital room. In the mean time, they started his chemo in the clinic. He received Doxorubicin, which is a red kool-aid looking liquid that is givin to him through his port. That took 15-20 minutes. He was also getting a bag of hydration through his port. I can't remember exactly, but I think around 3:30 p.m. we finally had a room ready for us. We got settled into our room and at 4 p.m. they started the 24 hours of ARA-C chemo into his port. It was such a little amount, but they drip it very slowly over the 24 hours. Colin and I watched a movie; did some drawing; walked around the unit; ate dinner and more TV. He was feeling great, no complaints at all. On Wed. morning after breakfast, Colin was invited to go down to the Children's Hospital school room. I walked down with him and got him settled in. He did a math program on the computer and then worked on his school worksheets with Miss Char. They really have a great set up with the school for kids who are admitted in the hospital. After leaving him in the school room, I didn't know what to do with myself. Next time I think I will bring my running gear. He was back before lunch. We had lunch and did a few things, then he went back to the school room to do some more of his worksheets. All of this made time go a little quicker for all of us. At 4 p.m. his ARA-C was completed. They then got his blood transfusion set up. Colin finally took a nap at that time. He slept for 2 hours. Clint came to the hospital after work. I got all of our stuff packed up and took some of it to the van. Wanted to be ready to go as soon as they said we could leave :-) At 8 p.m. his transfusion was done. His port was de-accessed and we were discharged.

So far Colin is not complaining of any nausea. And isn't complaining of any other possible side effects at this time. He was feeling well enough this morning to go back to school. We have been told that we should keep his routine as normal as possible. If he is feeling ok, he should go to school.

The chemo that he just received will make his counts "bottom out" probably within the next 7 days. Tonight a home health care nurse will be coming to our house to show us how to give him a shot called G-CSF (granulocyte colony-stimulating factor), a drug that helps blood cells recover from the effects of chemotherapy. He will get this shot every day for the next 10-12 days.

Next Tuesday we go back to clinic for labs; more chemo and a spinal tap.

One day at a time we are getting through this.

Thanks again to everyone for their continued prayers, for the meals, watching Emma and Kelly. It really does take a village!!

THANK YOU!
Love, Jan

Tuesday, October 08, 2002 at 07:14 PM (CDT)

Another long day at clinic. This morning Colin had his port accessed 8 a.m. and labs drawn. Labs came back really good: WBC - 5.0; hemoglobin 10.2; platelets 445; ANC - 3,300. Today was day 29 of his induction phase of treatment. They did a spinal tap with chemo and a bone marrow aspiration. Once again Morphine and Versed did a great job. Colin didn't even cry this time. We then had to sit and wait for Dr. Camitta to check the slides. Colin was pretty tired, so he slept on and off the whole time we were there. He seemed a bit dizzy and light headed, so they hooked him up to an IV bag of hydration fluids. Finally around 2 p.m. Margaret (Colin's nurse practitioner) came in to tell us that Dr. Camitta did not see any blasts on the slides. He wants to look at additional slides to confirm remission, but they are sure Colin is in remission. We should know definate results in the next day or so. Colin then received a push of Vincristine in his port and then we were allowed to go home. Colin took his last dose of Prednisone this evening. Tomorrow he starts a 5 day prescription of VP-16.

The protocol that Colin will be following for the next 2 years looks pretty overwhelming and scary to us. We will take each day as it comes. Next Tuesday we go back for labs, and if those are looking ok, he will be admitted to the hospital for Doxorubicin and 24 hours of ARA-C. We also have a consult meeting set up with the Oncology radiologist to discuss radiation. Provided all goes well, we should be able to come home Wed. evening or Thurs. morning.

GIVING THANKS:

As always, I want to say THANK YOU FOR ALL THE PRAYERS you are saying for Colin and the rest of us. We know they are helping. We have much to be thankful for.

Thank you Colin for being so brave today.

Thank you to Uncle Tim for taking Colin on a tour of the Sprecher Brewery yesterday afternoon. Sprecher Root Beer is one of Colin's favorite sodas (he also loves their Orange Dream Soda and the new Ravin Red). He sure did enjoy the special tour and all the goodies that came with it. [See picture]

Thank you to my Bunco group of ladies for offering to make meals for us every Tuesday. It was so nice to come home today and not have to even think about dinner. Anne B, the tacos and fixings were perfect for tonight; and the brownies :) And Colin says thanks for the Gummy Frogs!!

Thank you Mary Beth for being here with Emma today. And to my neighbor Beata for watching Colin and Em while I went to Walgreens.

Thanks to my friend Mary Beth M. for having Kelly over after school today, and for taking her to soccer practice and bringing her home.

We are so very blessed to have so many people who care.

Jan and family

Saturday, October 05, 2002 at 08:23 AM (CDT)

Colin went back to school on Wednesday morning. He has already lost most of his hair, so he wore a hat to school. Clint talked to Colin's teacher to see if the other kids could wear hats. We walked him in on Wed. and most of the kids were wearing them. Nice to see. He heard they were having corn dogs for lunch, so he decided he wanted to stay through lunch time :) I picked him up and was informed by Kelly that Colin had 3 corndogs!! Prednisone makes him hungry all day long. Mrs. Barry, his teacher, said that Colin had a great morning. He was raising his hand and participating in class. I was relieved to hear that. He also went to school 1/2 days on Thurs. and Fri. Nice to see him smiling and around his friends again!!

Yesterday afternoon Colin's hand started cramping up on him. I put a call into Children's and they said to bring him out for labs and a checkup. Mary Beth was able to come over and watch Emma and be here at 4 when Kelly got off the bus. Colin and I went right out. Clinic wanted to make sure he wasn't having a reaction to the Vincristine. They also wanted to check his calcium and potasium levels. Both of those levels came up on the lower side. He needs to add more calcium and potasium to his diet. They suggested giving him some Tums for extra calcium. Bananas, leafy vegetables, fruits. We will be happy when he is off the Prednisone next week. Pred. gives you cravings -- and for Colin those cravings are foods like hot dogs, ham and mayo sandwiches, bacon, pizza rolls, chicken strips. Not exactly a healthy menu. We are going to work on that.

Thank you Kathy and Paul for a nice dinner at your home last night. We had a great time.

We are heading out in a bit to watch Colin's soccer team play their game this morning. Then Kelly's game this afternoon.

Have a nice weekend :-)
Jan

Tuesday, October 01, 2002 at 01:36 PM (CDT)

We were back at the clinic today for labs and chemo. Labs came back great. WBC 2.5; Hemoglobin 10.3; platelets 209; ANC (Absolute Neutrophils)1,300 YAY! Colin was told he could go back to school tomorrow. We are going to try a half day in the morning. The Nystatin has really helped with the sore throat. He should be able to go off of that when he stops the Prednisone next Tuesday. Today has been a good day.

Special THANK YOU to Colin's cousin Gabby's class in Chicago, IL for sending Get Well cards to Colin!! WOW those sure were a nice surprise :) And to the St. Monica's 1st and 3rd graders for all the cards/banners and get well wishes and prayers.

THANK YOU ALL FOR YOUR PRAYERS and wonderful messages in Colin's guestbook.

Jan

Thursday, September 26, 2002 at 01:57 PM (CDT)

The blood transfusion helped. Today we were back for labs. WBC 0.7; hemoglobin 12.7; platelets 81.

Colin has been complaining that his throat hurts. Margaret looked in there today and said he has thrush. He is on Nystatin -- an oral solution he will take 4 times a day. Swish and swallow. Hopefully his throat will be feeling better soon.

Tues. 9/24/02

Clinic appt. 8 a.m. labs (WBC 0.8; hemoglobin 7.7; platelets 43; no blasts)

9 a.m. spinal tap, bone marrow aspiration, chemo (PEG-L-Asparaginase; Vincristine; (TIT -- MTX; HDC; AraC)

Hemoglobin was low today. Colin was given a blood transfusion.

Long day today!

I want to thank all of you for your prayers for Colin. They are helping. This morning Colin was scheduled for labs at 8 a.m. and then a spinal tap, bone marrow aspiration (BMA) and chemo at 9 a.m. Mary Beth came over here at 7:20 to be here with Emma and to help Kelly get on her 7:40 a.m. bus. Colin requested that Clint be with him at his procedures this morning. We headed out to Children's hospital in separate vehicles so Clint could go to work from Children's. Labs came back -- 0% blasts. Good news. His hemoglobin (energy) was low, it was down to 7.7 (healthy range is 11.5-14.5). I wasn't surprised to hear this. He was really tired all day yesterday and pretty worn down. They told us he would need a blood transfusion. We could have it done today or go back in tomorrow for the 3+ hour procedure. We decided to get it all done and out of the way today. First they did the spinal and BMA -- for those procedures they give Colin Morphine (for pain) and Versed (a drug that makes him forget what happened -- it does a good job!). He did quite well with everything. And like the last time, after a few minutes he asked when he was going to get the back pokes (he was surprised to hear already had them). After laying flat on his back for 30 minutes (to let the spinal chemo make its way through), he was able to sit up and eat. He wanted to eat the Cheetoes we brought along in our backpack. Knowing we would be there for 3+ more hours, I talked him into letting me go to the deli to get some sandwiches for us. After getting his 2 shots of chemo in his legs and a quick push of chemo in his port, they then started the blood transfusion. We watched tv, Colin took a few short naps and I read a magazine. One of the BMT staff came in to talk to me about BMT and to show me the results of our tests. Kelly is not a perfect match. She is considered a half match. Not really what they would ever consider using for a BMT. Same with Emma. They will now go on to search the Bone Marrow registry to look for matches -- it is a worldwide registry with over 8 million people registered. We were told today that because he doesn't have a perfect match sibling, AND because he was off treatment for so long before relapsing, that they feel the best treatment for Colin is the 2 additional years of chemo. The fact that he was off of chemo for so long (2 years 4 months) is a good thing. As long as he is in remission by the end of the first 29 days of treatment, that is the route we will take. About an hour later Margaret came in to tell us that there were 0 blasts found in his bone marrow!!!! That is considered early remission. A very good sign for him. I told you the prayers are working :-) That was our best news today. Colin still has a long road ahead of him. We go back for labs on Thursday morning. Then next Tues. for Chemo again. And in 2 weeks for another spinal tap and BMA to confirm remission. After that he will continue with chemo on a weekly basis for the next 2 years. We have been told the drugs will be harder than the first time around. We will know as we go along how well he tolerates the different drugs. Keep praying for him that he has little or no side effects. He will also have to have radiation on the testicles. My understanding is that he will start that in a few more weeks. Will know more later.

What we thought was going to be a 3 hour at the most day in the clinic, turned out to be an all day event. We finally pulled in the driveway around 4:45 p.m. THANK YOU MARY BETH for being here all day with Emma. We are so lucky to have you living so close to us. Some day I hope to give back as much as you have done for us over the past 5 years! Your being here as helped us out tremendously.

Thurs. 9/19/02

Back at Children's for labs:

WBC 0.8; hemoglobin 8.4; platelets 60.

Tues. 9/17/02

Clinic appt -- chemo day (PEG-L-Asparaginase and vincristine).

Labs: WBC 1.1; Hemoglobin 9.2; platelets 92; Blasts -- NONE SHOWED UP ON THE LABS!! Great sign!

9/15/2002 - Sunday

WBC 0.9; hemoglobin 10.4; platelets 134; blasts 2%.

Today Dr. Camitta told Colin he could go home!! YAY. As soon as he told us that, we were packing all of our stuff up. We couldn't wait to get out in the fresh air. We drove into the driveway and there was a huge WELCOME HOME COLIN banner hanging on the garage -- and baloons attached to the mailbox. The St. Monica 1st and 3rd graders all signed the banner.

Colin was so happy to be back home and really happy to be sleeping in his own bedroom gain. Mom and Dad are happy that our family is all together again at home :)

Sat. 9/14/02

WBC 1.0; hemoglobin 10.9; platelets 140; blasts 7%

9/13/2002 FRI

WBC 1.4; hemoglobin 10.5; platelets 130; blasts 2%!!!

Thurs. 9/12/2002

WBC 2.3; Hemoglobin 9.8; Platelets 126; Blasts 9%

9/11/2002, WED.

WBC 2.9; Hemoglobin 10.0; Platelets 123; Blasts 8%

Blasts have gone down that much after just 1 day of chemo!!

Tuesday 9/10/02

Colin needed to have surgery to have his port put back in. No eating until after surgery. LONG DAY! It was after 5 p.m. before he finally went in for surgery. First they did a spinal tap to see if there was CNS involvement. Dr. Camitta came out and told us that it was NOT in the spinal fluid. RELIEF! They also did a biopsy of the testicles. And put the port in. A few hours later he was up in his room and chemo was started.

WBC 4.3; Hemoglobin 11.0; Platetlets 119; blasts 43%.

Monday, September 9, 2002

Colin was dx with ALL on 11/17/97 when he was just 19 months old. He went into remission in December of 1997. He went through 130 weeks of chemo (POG 9201) which ended on 5/9/2000 when he was 4 years old. The picture of health! He started K4 that fall and completed K5 this past June. Fast forward to August, 2002. On August 6 he had his routine every 3 month check up at Children's. Everything looked great -- labs normal. About a week later Colin started complaining of pain in his shoulders/arm area. We took him to the pediatrician -- they ordered x-rays to see if he hurt his shoulder. They also did labs. Again, nothing showed up. Still in pain, by August 16 we had him at Children's Hospital for a bone scan and yet another CBC. We were told labs looked fine, bone scan was fine. A few days later Colin seemed to be feeling better. Then on September 7th at Colin's first soccer game of the season, he really looked sluggish. Both arms hanging at his sides and he wasn't feeling too well. His right wrist was hurting. A friend of ours who is a MD took a look at his arms. She recommended that we get him checked out. I ended up taking him to the pediatrician after his game. They took x-ray of the wrist and another CBC. Nothing showed up on the x-ray. The ped wanted to run the labs past the oncologist. Monday morning I received a call from Children's asking me to bring him out for more labs. She asked me if Clint could meet me at the hospital. I knew that something was wrong. Clint was out of town in Atlanta for work. My sister Mary Beth offered to drive out to Children's with us. They did labs and less than an hour later we were told that Colin was relapsing. GASP. How could this be? He was more than a year off of treatment. We always thought that relapse occurred in the first year off treatment. I called Clint and he arranged to get a flight out so he could be with Colin. They did a bone marrow aspiration. We were then admitted to the hospital.

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