History

Monday, January 7, 2013 7:35 AM CST

Wow, it has been over three years since I've updated, and probably 6 months since even visiting this site. Things have changed so much for us. Ethan is almost 14, nearly 8 years since his diagnosis, and coming up on 5 years off treatment in March. Quite frankly, he's nearly perfect. He still has the minor mitral valve regurgitation, but it hasn't stopped him from playing football and being responsible for quite a few quarterback sacks this last season. He has grown into a young man that makes me proud. He loves his siblings and parents, never shying away from letting us know.
We are lucky and words can't describe the gratitude we feel for all who have been a part of our lives due to his cancer diagnosis.

Sunday, January 17, 2010 10:06 PM CST

Five years ago on MLK day, our lives changed forever. I still can believe what we, as a family, have overcome. I am so proud of my son and my family for what we accomplished and what was have become.
Thinking back to the pre-cancer days in our life, we had been the process of getting ready to buy a house. This adventure was put on hold, but I am happy to say that just recently we have restarted this venture. I can't believe it was over three years of struggling through treatments, figuring out how to buy groceries and praying constantly that what you were doing was going to work. We spent almost another full two years getting back on our feet and figuring out life again. It feels so strange to be making these choices, strange to know that we really are getting back to life; but I am SO READY!!!!!!
~Shannon and the gang

Friday, October 2, 2009 7:50 PM CDT

Here we are, rocking along nearly 18 months off treatment. Ethan is now in 5th grade, growing like mad and doing excellent. He is enjoying school, hating that everyone is taller than him and becoming way too grown up for this mommy's taste.

Wednesday, January 14, 2009 8:45 PM CST

Life is moving fast. We are are trying hard to keep up. I can't believe how fast Ethan is approaching the year off treatment mark. It can't seem possible that it has been almost a year since he received his last doses of chemotherapy. Each day my fears of relapse creep farther back in my mind. They have not left completely and I doubt they ever will, but there is more and more time between those ugly thoughts.

If you are still coming by here, thank you. I think of this page often, but honestly...not having to come update you is a wonderful feeling.

Go love those babies...
~Shannon and the gang

Friday, November 28, 2008 9:54 AM CST

I appologize for leaving you all in the dust, but I have a weird feeling when I come to this site. It's like we don't belong here anymore. I have struggled finding words to describe the feelings I have about our life now. It is so wonderful, yet still so full of fear. I am hoping to start another blog that I can keep up with, but not sure if I have the time to dedicate to it.

I am not saying this is my last post, just an explaination of where we have been.

Ethan is wonderful. So far he has managed to escape all of the colds that have traveled through the family. His sister has been to the doctor more than he has in the last few months. Wyatt is still finding himself in his new life as a kindergartener.

John and I continue to find our way as parents of three healthy kids. We are enjoying our time together, not being seperated with a kid in the hospital. We are thankful for our kids and thankful for each other. Really, is there any more to say?

Go love those babies,
Shannon and the gang

Monday, October 20, 2008 11:25 AM CDT

We are all hanging in there. Abagail keeps bringing home colds to share with us all and we kindly tell her, "No Thank you," but for some reason it still spreads its way around the family. Currently we are all on the downside of the last bout and hoping Ethan kicks it as quickly as possible.

School and work are filling our lives, but we are still finding time to be together and enjoy life.

Go love those babies...
Shannon and the gang

Wednesday, October 8, 2008 2:23 PM CDT

Really, a week! Yes, I am a posting slacker!

So, so sorry!

Things are still going great. Not much to report.

Go love those babies...
~Shannon and the gang

Thursday, October 2, 2008 8:20 AM CDT

Things went wonderful yesterday at Ethan's doctor appointment. He looked excellent, was full of energy and his counts were those of (dare I say) a "normal" child. A wonderful day indeed.

So here we are, six months off treatment and things couldn't be any better. Not only is our health going great, the kids are figuring out what is expected of them in school and actually doing it.

The main issue Ethan has been facing educationally is his times tables. I found a great game the other day that he just loves. Timez Attack This game is so fun and it helps him to memorize those times tables instead of counting them up. I can't honestly believe that they give you a free version with all the info the kids need and "if" you want to upgrade it is only for more lands...

So, as you see, a normal life...kind of scary, huh!

Go love those babies.
~Shannon and the gang

Tuesday, September 30, 2008 11:26 AM CDT

It seems like I don't come here near often enough, but honestly, things are so perfect for us that there is no reason!

Tomorrow is Ethan's SIX MONTH off treatment appointment with Dr. Bowman and I can't believe it has been that long. On one hand it seems like yesterday, but other times it feels like it was years ago. Our lives are changing daily and we are doing our best to cherish each other.

Thanks for continuing to check on us...I will update after the appointment tomorrow!

Go love those babies...
~Shannon and the gang

Monday, September 22, 2008 3:01 PM CDT

Life is moving along, keeping us busy. The boys are still enjoying school and discovering new things everyday. I have been so proud to watch them grow and be the little sponges that they are. They learn so much at school and seem to thoroughly enjoy it. Thank goodness.

Abagail is also growing and learning everyday. Each day brings a new and exciting thing for her to learn. Though, I think she might be teaching us a little each day too. She teaches the boys about being kind and sweet to girls. A great lesson, I think. Ethan seems to really get it, while Wyatt would like to pretend he shouldn't have to.

We are so thankful for the joys life is giving us, while still remembering there are others out there who are still facing cancer and it's battles.

Thanks for checking in on us.
Go love those babies...
~Shannon and the gang

Tuesday, September 16, 2008 11:21 AM CDT

Yes, we are still hanging in there. Life is wonderful. We are keeping busy with school and work.

Ethan started gymnastics recently to help him build strength and get his body a little more flexible. He loves it and gets excited when they start working on the different "Olympic" style events. We are so proud of him, as he is the star of his class. Last night the coach told Ethan if he keeps up the good work they will start him on the "pre-team" team around Christmas time. The self-esteem Ethan is obtaining is wonderful. I can see the pride he has in what he is able to accomplish.

Wyatt is still being Wyatt. Kindergarten brings exciting events to his life daily. He is learning about how to socialize. We are proud of the little man he is becoming, if we could only convince him he is not "required" to wear his boots and jeans EVERYDAY to school.

Abagail is growing like mad. I can't believe how big she has gotten, at the beginning of the summer she could still wear 2t/3t...now...5t! Bleh. I need to go buy her some more clothes for winter; her pants alone look like she is getting ready for a flood.

So as you can see, we are hanging in there, enjoying our lives; Loving watching our children grow and cherishing them every day.

Thanks for checking in on us...
Go love those babies.
~Shannon and the gang

Thursday, September 4, 2008 4:38 PM CDT

It is official. I am the winner of the Mother of the Year award. I got a phone call at work today from the school nurse. For that millisecond after she introduced herself until she explained the reason for the call, I held my breath.

Oh no, I thought...What is up with my Ethan.
Is he sick?
Is it his ear?
Is he wheezing?
All these thoughts in such a small amount of time.

Then, she said it...

"Mrs. Ford, I had Wyatt in my office this afternoon."

Before she continued, I let out a sigh of relief followed by a little giggle, since I was so excited it wasn't Ethan. Now, mind you, I still don't know what is wrong with Wyatt, but I am so giddy, thrilled about it not being Ethan, I don't even know if I was concerned why Wyatt was in there. Yes, I am a marvelous mother, thanks for asking!

The good news is that Wyatt is okay, he just had a mere "Wyatt" type of accident. Sometimes he forgets the amount of space he takes up in this world and the momentum of his body gets ahead of him and he collides with others. Not sure exactly how it happened, but he little girl in his class has a matching whelp on her face to. In true Mommy fashion, I took a picture to share with you all.

So the first call has come in from the nurse, and it wasn't Ethan...woohoo! Sometimes I can't believe we are where we are, life is just too normal!

Thanks for checking in on us...
Go love those babies...
~Shannon and the gang

Sunday, August 31, 2008 8:44 PM CDT

We have survived the first week of school, not sure how, but we did! Things are great. The boys are loving school and Abagail is loving her daycare, too!

I am watching the boys change before my eyes. You can see how great Ethan feels and I am cherishing watching him evolve. Over the last month, he has gone from being a tired kid who only wants to play video games to begging us to go outside to run and play basketball or heading up to gymnastics and keeping up with other boys. I can finally see the boy he should have been over the last three years and I am loving watching every minute of it.

Wyatt is going from being my baby to being a big boy. I am not and will never admit that this makes me happy, but it is fun to watch! Kindergarten is a blast and he is even more excited about spending time at the Boys and Girls club while waiting for me to pick him up!

Ethan has his five month off treatment appointment on Wednesday and I am expecting nothing less than an amazing report. We are actually excited to tell Dr. Bowman how great life is.

I am off to relax, a great labor day weekend for us. We are relaxing and enjoying each others company, all while keeping the people in the path of Gustav in our thoughts.

Go love those babies.
~Shannon and the gang.

Tuesday, August 26, 2008 9:25 AM CDT

They are officially at school.

Ethan played it cool. Not wanting a kiss in front of his friends, but still willing to give me a hug. I might get one more year out of that boy, then I'm sure it will be "Just let me ride the bus, Mom!!!"

Wyatt was a mess! Mommy was a mess!!!! Yet, we still survived. I took some pictures, but will have to wait until I get home to upload them.

Thanks for checking in...go love those babies.
Shannon and the gang.

Monday, August 25, 2008 1:49 PM CDT

Tomorrow is the day!

We are headed off to school. The kids are thrilled and sad at the same time. Both boys have told me how much they want to go to school, but yet, they want to still enjoy the summer. I have started a new job in the last few weeks, so they are also sad about not spending as much time with me. I miss them terribly during the day, but so thankful we are able to continue on with our lives...finally!

I will update tomorrow, hopefully with news of a great first day!

Go love those babies...
Shannon and the gang.

Friday, August 15, 2008 7:25 AM CDT

We successfully made it through another week. I started a new job at the bank this week and it has been a new experience for all of us. Next week Abagail starts in daycare, then the week after, the boys start school. Changes are happening fast and it is hard to keep up.

Thanks for checking in on us...go love those babies!
~Shannon and the gang

Sunday, August 10, 2008 5:57 AM CDT

Relentless:

How many of you can say that there is something in your life that you have been relentless about? I know, some of us strive to be better people, eat better meals, exercise a little more, but really, are we relentless about those things?

When our family teamed up with the Leukemia and Lymphoma Society a few years ago, we heard this word used several times. It is like a motto to them.

The true meaning of the word relentless is never-ceasing, to be steady and persistent.

To me the true definition of the word can be seen daily for me in my son. As many of you know, three months into kindergarten his life changed more dramatically than we could have ever imagined when he was diagnosed with T-Cell Acute Lymphoblastic Leukemia. The next three years and two months he fought relentlessly to beat the disease he was faced with. Not once did he complain. Not about the monthly spinal taps and bone marrow aspirations. Not about the painful shots in his leg, blood draws and many port accesses. He even didn�t complain (too loudly) about the over 100 days he spent in the hospital due to chemotherapy or unexpected infections from the chemotherapy. Yes, these days were hard on him, but yet, he pulled a power from within to fight relentlessly to be a normal boy again.

Today he is that young boy. One who has overcome a huge obstacle in his life, someone who is much more than what he appears. He is a nine year old, red-headed, bundle of energy whose heart is bigger than most. He carries a pride about what he has accomplished without being boastful. He plays with his friends with a new found respect for the time they have together. All while remaining just a boy. We couldn�t be prouder to say our boy has a relentless spirit about him and I know in the future it will lead him to do great things.

I am asking you to be relentless with us today. Help us to find a cure. We want to help fund the society�s mission. We need a cure. There should never be another child that has to learn the responsibility of being relentless at the age of five. No more parents should have to bury their children because cancer robbed them of their years. Yes, we are the fortunate ones, Ethan�s days of his original diagnosis are behind us, but the fear that he cancer could return is always with us.

Please, donate to our cause, even the smallest amount can make a difference.
http://www.active.com/donate/ltnDallas/shannonford

http://www.active.com/donate/ltnDallas/shannonford

Wednesday, August 6, 2008 4:28 PM CDT

Four month off treatment visit was a HUGE success. Ethan looks wonderful, his energy is returning, no major complaints...what else can we ask for.

Oh yeah, perfect looking blood counts...CHECK!

Dr. Bowman was pleased and said he can't wait to see us again in September. We practically skipped out of the office to the van. Mom and son were thrilled with the report.

Only a few more weeks of summer to go. School supplies and clothes have been purchased. Two boys are thrilled and ready to start the year.

Life is wonderful...thank you for checking in on us.
Go love those babies.
Shannon and the gang

Tuesday, July 29, 2008 8:06 PM CDT

The kids are still doing well. Ethan seems to be feeling wonderful. I can see him get more and more energy as the days go by. They are really ready for school to start and I think I might be ready, too! Although, it will be difficult to let my Wyatt head off to kindergarten.

I am starting to collect school supplies, I love to buy pencils, crayons and paper. Folders with brads are just oodles of fun! Really, what does that say about a person? Hopefully something good :)

Abagail will be three in a few weeks, really not prepared for that event. I know I have said it recently, but man, these kids are growing way too fast.

I did have a meeting with the principal of Ethan and Wyatt's new school, and if it is any sign for the year to come, it is going to ROCK! They are starting at a brand new school in the district next year, so the attendance will still be rather small. The plan is for only 3 kindergarten and first grade classes and 2 of all the other grade levels. This is exactly what Ethan needs to help get him back on track for the time missed over the last three years.

Thank you for taking the time to check in on us. Life is rolling by so fast lately and it seems like it just won't slow down. We need to get an appointment for our FOUR month off treatment visit with Dr. Bowman. I will definitely update about that when it happens.

Go love those babies...
~Shannon and the gang

Tuesday, July 22, 2008 12:12 PM CDT

I was reading someone else's blog the other day and her post really hit a cord with me. She was remembering the moment that the doctor told her her son had cancer...I, too, remember that moment so vividly in my mind. The thought that she mentioned was exactly what I was thinking, but hadn't ever been able to put it together in words or emotions.

She wondered and asked if her son was already gone. The doctor didn't understand, fully re-assuring her that he had an excellent chance of surviving and was far from gone. What she was actually referring to was his future.

Is the man he was "going" to be gone?

This could be debated to the ends of the Earth and back, I'm sure, but it never stops a mother from wondering what our children would have been without the hardships they have faced. These things have been circling in my mind for the past few days, but thank goodness, I am still able to watch him grow.

He is definitely not the same child he was before he was diagnosed, but then again, how will we ever know what he would have been? He is such a sweet boy, with a loving and caring heart...I guess I just have to keep reminding myself that he is as wonderful as possible because of his hardships.

Thanks for checking in on us...
Shannon and the gang

Saturday, July 19, 2008 3:09 PM CDT

Wow, I really am getting to where I only come here once a week or so. I guess that just means we are busy, busy, busy, and Ethan is doing great!!! We still have days of tiredness and he has his typical my legs are sore, or I need to rest moments, but he is all in all doing great.

Life is keeping us super busy, with birthday parties, family picnics and general summer fun. I have started buying school supplies for my boys as they go on sale, can't believe I am going to have two in school next year. Wyatt is excited about kindergarten, probably much more than his mommy is!

Abagail is getting ready to turn three on the 11th of August. I can't believe how fast she is growing. She is a full fledged big girl now (with the exception of potty training) and I expect her to be an official preschooler before long. Life is running so fast and I am desperately trying to hold on to these years of fun and excitement. I just can't understand why these kids find it necessary to grow up?

Thanks for checking in on us and go love those babies!!!
Shannon and the gang

Friday, July 11, 2008 8:41 AM CDT

We are leaving in a bit to pick up our boy from camp. I have missed him like crazy this week, it is so quiet around here without him. Funny how the two little ones just sit around and play quietly, but when Ethan is here it is like a crazy circus!

Wyatt saw him yesterday at preschool camp and said they "talked." I asked him what he said and was told, "Mom, it was just brother stuff!" He would tell me that Ethan said he was having fun and I just can't wait to hear about it today.

Wyatt had a blast yesterday...he was so tired when he got home and after a day at the zoo in 103 degree weather, Abagail slept well last night, too!

Gearing up for a lazy weekend together. Hoping to enjoy some family time. Not sure what is planned, other than the dreaded grocery shopping...

Thanks for checking in on us...
Go love those babies,
Shannon and the gang

Sunday, July 6, 2008 7:37 PM CDT

Lots of fun this weekend, followed by the departure of Ethan to camp. We are all finally resting and doing our best to get ready for the week ahead. Loads of fun on the fourth with oodles of fireworks and food.

Ethan seems to be feeling wonderful and I almost feel self-conscious about saying that. I worry so much that I might jinx our wonderful life. Things are still crazy, but thankfully, they are a healthy crazy. I would say that we moving on, but daily we still have "cancer" things that cross our mind. I would admit it doesn't consume us like ti used to, but it is never far from our mind.

Thanks for checking in on us...
Go love those babies,
Shannon and the gang.

Tuesday, July 1, 2008 9:05 AM CDT

We are gearing up for camp again next week. Ethan will go for the entire week and Wyatt will attend preschool camp on Thursday again. They are both thrilled and can't wait.

Ethan is off at the Mamaw & Papaw's again this week spending some fun time with his cousins. They seem to be having a blast and we even got a call last night that they found a puppy. My in-laws live in the country, so they are often the recipients of dogs and puppies that people no longer want. Sad to think that some people think it is okay to do that, huh? I am leaving the decision about the puppy between the boy and his father. Not sure how it is going to come out, but I can tell you, that little boy is willing to do almost anything to get to keep this dog.

As you can see, I am still playing the game of "Where in the world is Ethan Ford?" But, I can honestly tell you, I am enjoying every minute of him being a true boy for the summer!!!

GO love those babies,
Shannon and the gang

Friday, June 27, 2008 3:36 PM CDT

Ethan seems to be doing great. We now have his port hanging on the fridge in a zippy bag instead of in his chest. He is so excited to be port free, but is still taking it slow.

Lots of video games and resting planned for the rest of the day!

Thanks for checking in on us and go love those babies...
~Shannon and the gang

Thursday, June 26, 2008 8:36 AM CDT

I'm being rushed out the door, for we are on our way to get our port removed.

I think Ethan is very ready to enter the next stage of being cancer free!!!

Tuesday, June 24, 2008 3:36 AM CDT

I feel like I am playing a game of "Where in the World is Carmen Sandiego?"

With one exception, it is:

"Where is Ethan today?"

Ethan is visiting with his Mamaw & Papaw for a few days, I will pick him up today so I can take him to see the surgeon. On the way home, he will be dropped off for a sleep over at a friend's house. This weekend, he goes back to Mamaw & Papaw's for a week, then off to camp...and many more things after that I'm sure.

This summer has been a great one for my boy. He is loving each and every minute of spending time with friends and family. I know he is anxious about his port removal after camp, but will bounce back and be good as new before we know it.

As you can see, it is 3:40 am and I am updating Ethan's site. I'm having trouble sleeping lately, weirdly enough, it probably has to do with the fact that all of my children are gone and I could actually get a full nights sleep, so my body won't let me. Lots of things running through my mind as I am looking for a job and trying to keep up with the comings and goings of Mr. E. and the little ones.

Thanks for checking on us...Go love those babies...
~Shannon and the gang

Thursday, June 19, 2008 9:47 PM CDT

Ethan had his three month off treatment appointment yesterday and it was wonderful! Dr. Bowman was extremely pleased with the way Ethan looked and gave me a referral to call the surgeon about Ethan's port removal.

We are scheduled for an appointment on Tuesday for a consult and should have the date set then. We are hoping to wait until after camp to have the surgery since you can't swim for 10 days afterwards and would hate for him to miss out of that fun at camp.

We are still doing our best to get into our off treatment life and even though they are farther apart, there are still time when the fears of cancer consume us. Ethan has complained of a mild headache for the last few days (Dr. B said not to worry too much) and today he had a bloody nose. These things are probably just normal kid things. I gave him a Zyrtec this morning and it helped with the headache and who knows if the bloody nose was from allergies. We know they are probably just normal things, but relapse is never far from our minds.

Thanks for coming by and checking in on us. We are happy to have people supporting us and helping us through times when we are really just trying to make it by.

Go love those babies,
Shannon and the gang

Monday, June 16, 2008 10:09 PM CDT

Sorry I haven't been around much lately, but our family was blessed with the trip of a lifetime last week and I am back here to tell you all about it.

I know you have seen many pictures of our Ethan fishing. Yes, he loves it. It is something that runs in his blood. Both is mommy and daddy love to fish, as well as both his grandpas. He really didn't have a chance of escaping it as a passion. There was one thing, though, he so desperately wanted to learn to fly fish and have an opportunity to fish in a river with waders. Lucky for him, there is a great organization out there just to meet those dreams and Catch a Dream did just that!

We dropped Abagail off with her Mamaw and Papaw and headed off with the boys to Riley's Station in Arkansas. We had no idea what to expect, we know that a couple from Mississippi would be meeting us there with the guide family and we were supposed to just relax. When we arrived, the greeting was so great it brought tears to my eyes. These people were so excited to see our boy...and the rest of us too!

The days that followed were days filled with love and joy. We were shown a caring that is hard to explain. No need left unturned, no kid left without a hug, and plenty to do, all while resting and enjoying each other as a family!

Ethan caught a beautiful rainbow trout in the creek and many in the river and made some really great friends. I could never explain or describe how wonderful the trip was, but I can tell you that we will be heading back to see the Riley's as soon as we can. My sweet little Disney loving boy made the comment that he has no desire to return to Florida...Arkansas is the only place he wants to go as a family from now on.

I am doing my best to get a slideshow to work, but if not, head on over to my Shutterfly account and check them out:

http://share.shutterfly.com/action/welcome?sid=8BbsXLJm5ZvbA¬ag=1

Go love those babies,
Shannon and the gang

Saturday, June 7, 2008 6:37 PM CDT

Ethan seems to be doing much better now that we have him on the new nerve pain medicine. He is already BORED with summer...FUN!!!

We are doing our best to keep occupied and have fun.

Thanks for checking in on us...
Shannon and the gang

Monday, June 2, 2008 6:49 PM CDT

It's been almost a week since I have been here...sorry!

Ethan is trying his best to keep it together. He is excited, yet not excited about the last week of school. His arm is driving him crazy still and he is really complaining about the tingling sensation in his arm. He has also scratched it completely raw on the inside of his elbow. Lots of bandaids and neosporin and it is looking much better.

Dr. Bowman has prescribed him another nerve pain medication and basically diagnosed him with Postherpetic neuralgia which is basically the long term pain side effect of shingles. We are hoping the "long term" part of the effects will last a short about of time. There is a possibility that it could last 3 months, 6 months, or even a year...we are hoping for the least amount of time possible. The nerve medication that he will have to take to keep it from bothering him is not really gentle on his kidneys.

All in all, things are well. Ethan is bothered mostly in the evening and still is able to have a good time at school. Thanks for checking in on us.

~Shannon and the gang

Tuesday, May 27, 2008 10:27 PM CDT

Got the approval at noon today to send Ethan back to school. He is feeling better every day and is so excited to be back with his friends.

Yesterday Johnny and I had a revelation. We took the kids to McDonald's, even went inside to play (you know, not just picking it up in the drive through then heading back to our germ free home). The kids were thrilled and while they were playing I watched Ethan running through one of the tubes and Johnny asked me when the last time we let him play in a play area like this. I looked at him saying how I was thinking the same thing...we both realized it was over three years ago.

Does this mean we are getting on with our new normal? Isn't it amazing we were almost done eating before we even thought about cancer?

I sure do think so!

Go love those babies...
~Shannon and the gang

Sunday, May 25, 2008 2:50 PM CDT

The arm is looking much better, still bothering him off and on, but he is getting better by the day.

Not sure when he will be going back to school. Still need to talk to the doctor about that, not sure if we will be able to control the pain good enough.

Thanks for checking in...go love those babies.
Shannon and the gang

Thursday, May 22, 2008 10:06 PM CDT

We are home.

His arm is healing, still looks horrible and hurts, but is getting better. He is not "supposed" to be contatgious either.

We are trying to get back into our routine...
man, we get really out of whack while in the hospital.

We will retrieve the other two monkeys from their Mamaw tomorrow...
more routine building to come...

WOOHOO!

Go love those babies,
Shannon and the gang

Tuesday, May 20, 2008 12:52 AM CDT

Sorry about the lack of updating, I believe I might have been trying to recover emotionally from the relapse scare. Ethan seems to be doing a little better. We have gone from scheduled doses of morphine to Tylenol with Codeine as needed between our nerve pain medicine doses. He was forced to use him arm today during physical therapy and although he fought it like you wouldn't believe, afterwards, he was so happy to realize he could "actually" use his arm.

He hasn't gotten out of bed except to potty since Saturday and is now starting to make his way out of bed to do a few things. Reading his books and watching movies is still the preferred entertainment for him.

Dr. Bowman informed me today that sometimes 5-7 days of the IV acyclovir before we can drop him to lower oral dosages. We will have to see what happens there. The rash is still getting worse, showing no signs of slowing as of yet. We are here until that happens. Dr. Bowman said is will be extremely obvious when we reach that point. Ethan did spike a fever last night...a high one..39.7 if I recall. We are concerned, but not overly freaking out about it. We just need to watch and see what happens. So far, no fevers today!

Thanks for taking the time to check in on us. If you are the praying kind, please do so, times like these are hard on us all.

Go love those babies...
Shannon and the gang

Monday, May 19, 2008 10:10 AM CDT

Wonderful news. Our Dr. Bowman came in and said...."Totally shingles!" The rash has gotten 10x worse over night and he feels there is absolutely no way it can be leukemia back again. There will be no bone marrow aspiration, he doesn't feel the need.

Basically he reassured us that this is just another sign letting us know that poor little Ethan's body is not even close to normal and is still being suppressed by the treatment.

Ethan will most likely miss the next 4 weeks of school, making him maybe make the last week...We will be here until the rash stops spreading and we will be able to control the pain with oral medications. He is going to consult with pain management to get us some nerve pain medications. He will also be getting PT and education involved so we can sort everything out.

Thanks for your thoughts and prayers...this have definitely been an extremely stressful 24 hours.

Thank God for shingles!
~Shannon and the gang.

Sunday, May 18, 2008 9:49 PM CDT

Ethan's pain got extremely worse and we decided to take him to the ER on Saturday morning. After nearly ten hours, an xray, blook counts, and MRI, we were moved upstairs for various reasons. The first reason was merely pain management. The pain in his arm could not be controlled by even morphine. He was okay laying perfectly still, but movement was difficult. The second reason was because the MRI results showed "mildly heterogeneous bone marrow."

What is this you ask? Well this evening, we were informed by an oncologist (Dr. Bowman is out of town, but will return tomorrow morning) that in the oncology world, those words basically mean leukemia until proven otherwise. It felt like a punch in the stomach. My heart sank. I knew is was coming, I had done some research...it just makes it so real to hear it from an oncologist.

Ethan also has a strange rash directly over the location of the pain/weird bone marrow that we are desperately hoping is shingles. This would be glorious. The only problem and fear we have is that shingles still don't explain the issues with his bone marrow since shingles only involves the nerves.

Tomorrow we are scheduled for a bone marrow aspiration to tentatively rule out relapse. I use the word tentatively since the doctor made sure to warn us that a clean marrow tomorrow might only be temporary. He is afraid that leukemia might have localized in the arm. This obviously was a no holes barred doctor, but that is okay, since I deal with the rough ones the best.

As I said earlier, Dr. Bowman will be in tomorrow morning. I am sure he is already fully aware of the situation and will shed some more light on things for us. I am hoping his reaction is much different than the other doctors, but honestly...I'm not sure if it will be. Please pray for shingles, we desperately need it to be shingles. And pray for Dr. Bowman to have some knowledge that will explain the weird marrow...knowledge that doesn't include leukemia.

Go love those babies...
Shannon and the gang

Friday, May 16, 2008 8:20 PM CDT

Wow, five days since my last post. Ethan's week has not been the best. He seems to be avoiding the cold his little brother has caught, but is having problems with this joints. Poor kid has been taking Tylenol everyday to make it to school. His ankles are really bothering him and I know he has past history of avasular narcosis, but we were released with "great looking" MRI and x-rays last summer. He also seems to be complaining of shoulder pain, not sure what that is from, but I think it is warranting a call to Dr. Bowman.

We go next Wednesday for our two month off treatment appointment. It seems like I don't think about things like blood counts except when we are getting close to seeing Dr. Bowman. I know in my heart that things are fine and we are only dealing with the effects of chemotherapy; I just wish he didn't have all these yucky side effects.

Thanks for checking in on us...
Go love those babies..
Shannon and the gang.

Sunday, May 11, 2008 8:06 PM CDT

Dear Mom,

I will love you forever,
and forever shall be.
You help kill the cancer
that took over me.
I thought I couldn't do it,
but you helped me succeed.
You deserve more
but this is all I could do.

I hope you like it.

You son,
Ethan

Is than anything else I should say...what a wonderful mother's day I had.

Tuesday, May 6, 2008 9:26 PM CDT

Our life seems strange to me at the moment. I go through days of wanting to do things, but find that I don't in fear that Ethan might need to come home from school. It seems so silly, but I still get phones calls from the nurse at least once a week. I think Ethan is getting really tired, it is hard to go to school everyday.

Today was one of those days. I felt guilty and horrible all day after telling him he was staying. Thank goodness, he came home running off the bus, bouncing into the house and telling Wyatt all about the AWESOME day he had. It relieved my heart a little and made me feel like I made a good choice to make him stay.

Hoping the rest of the week goes as smoothly as the last few day have. Thanks for continuing to check on us.

Go love those babies...
Shannon and the gang.

Sunday, May 4, 2008 6:17 PM CDT

A busy, busy week, and a busy weekend to follow. We have been running around like crazy. Ethan is going to school almost everyday, not missing any because he was sick, just for the dentist. The weekend was filled with friends and family, just the way we like it.

He seems to be feeling okay, ready to start the week ahead. He can't wait to go to school, which is awesome. I think he just loves going and feeling good. Nothing better than being with his own friends.

Thanks for checking in on us...
Go love those babies,
Shannon and the gang

Friday, April 25, 2008 10:27 AM CDT

I feel kind of silly coming here and reporting the same thing over and over, but I won't lie...it feels GREAT to tell you Ethan is doing wonderful. He has a bounce in his step we haven't seen in a while. He is also showing signs of being a normal nine year old by testing us constantly with the rules in his life.

Ethan is going to the dentist next week. We know he has some more work to be done...that chemotherapy is some nasty stuff on those teeth! He is actually excited to go since he is going to the same dentist his daddy uses. Wish us luck as we go through the process of using a family dentist vs. a pediatric dentist.

I am gearing up for the year ahead, school year, that is. My boys will be moving to a new school since we have been re-districted. I am ready to take on the challenge and am excited to say that Wyatt will be a member of this brand new schools very first kindergarten class. I can't believe he is ready to start kindergarten. I am filling out papers to register them for after-school care since I am hoping to get a job over the summer. I am not ready to leave my babies, but we definitely have a job ahead of us as we try to get back on our feet after the last three years.

Thanks for taking the time to check in on us...

Go love those babies,
Shannon and the gang

Tuesday, April 22, 2008 7:57 PM CDT

Life is still moving. Ethan seems to be feeling good. He is attending school everyday and seems to come home with much more energy than he used to. It has been so fun to watch him be able to concentrate better in school and enjoy the time with his friends.

It seems strange to not have appointments all the time. I miss my mother-in-law. She used to come down weekly to babysit and it seems like ages since I have seen her. Although, I believe it was last week, but it seems so strange to not be seeing her tomorrow.

So, as you can see, we are still adjusting...

Go love those babies,
Shannon and the gang

Friday, April 18, 2008 10:18 AM CDT

SELFISH MOMMY PLUG

Please go vote for me! I entered a dress I made for Abagail into a contest (voting ends Tuesday) and I am currently in 2nd place. Probably won't win first, but would love to maintain second or even third!!!

THANK YOU THANK YOU THANK YOU

http://www.fatquartershop.blogspot.com/

Thursday, April 17, 2008 5:22 PM CDT

Our first off treatment visit was WONDERFUL! Ethan's counts were great, the zythramycin seems to be doing the trick and Ethan is feeling great. We didn't give IVIG in hopes that his levels will maintain themselves as his counts recover. Life is trying to get back to normal, but don't want to get to excited, with Mr. Ethan, I never know what he will do!

Thanks for checking in on us....
Go love those babies,
~Shannon and the gang

Monday, April 14, 2008 7:10 PM CDT

The antibiotics seem to be working. Ethan went to school today and seems to still be feeling good. We have our first off treatment appointment with Dr. Bowman on Wednesday at the Lewisville clinic. I am really ready to see what he has to say.

Thanks for checking in on us....
Go love those babies...
~Shannon and the gang

Thursday, April 10, 2008 7:48 PM CDT

I told you me telling you that he was feeling better could do nothing but harm. The school nurse called this morning to tell me Ethan felt bad, looked bad, oh, and he had a temp of 99.6. I went and picked him up and by the time we got home, he was 101.6....YUCK-O!

We managed to get an appointment at the Fort Worth clinic and were off to get counts and be seen by a doctor. His counts came back CRAZY!!! His white blood count was over 15,000 and I nearly went through the roof. I won't lie, I was scared, but Dr. Howery came in and smoothed things over, explaining it was almost 90 percent neuts, which means he has a nasty infection somewhere. He examined him and said he didn't sound that bad, but to be cautious, he was going to start him on a 14 day cycle of Zytromycin and get a chest x-ray. So we got him de-accessed, grabbed up our prescription and headed to the lab to get the x-ray. Before we knew it, we were on our way home awaiting the phone call to let us know the x-ray was fine.

Unfortunately, that call never came, instead, the call came saying the Incredible Mr. E had the starting of a pretty nasty looking pneumonia. Hopefully the antibiotics will do the trick and he will start feeling better soon. We already have our "first off treatment" appointment for next week in Lewisville with Dr. Bowman, so we will keep that.

Ethan will spend the next few days doing his best to feel better. He will hopefully relax so he can heal.

Go love those babies...
~Shannon and the gang

Wednesday, April 9, 2008 9:48 AM CDT

It seems like Ethan might be feeling better. Although, I hate to say it, because it usually causes problems. He made it to school all day yesterday and is there again today. I hope this is a sign that his body fought off something and he is getting better.

Things have been pretty lazy around here, due to Ethan not feeling good. I really hope the feel good days stay around because we have loads of plans in the next few weeks.

Thanks for checking in on us...
Go love those babies
Shannon and the gang

Friday, April 4, 2008 10:36 PM CDT

I give up. We went out to eat this evening and half way through dinner, Ethan laid his head down in my lap. Poor boy, he feels miserable. We are hoping we can hold out over the weekend and see how he feels. Right now, the plan is to email Dr. Bowman on Sunday night in hopes that he will see Ethan on Monday at the clinic.

Trying our best to hold our heads up, but honestly...we are just bummed.

~Shannon and the gang

Thursday, April 3, 2008 8:17 PM CDT

Most likely an ear infection. We will see. He isn't feeling too bad and the fever has practically gone away. Pushing fluids and waiting to see what tomorrow brings.

Thursday, April 3, 2008 12:36 PM CDT

Just picked Ethan up from school. He's feeling rotten and running a 100.7 fever. Bleh. Says he is having trouble breathing, which doesn't surprise me with the crazy weather we have been having. I am giving him a breathing treatment and waiting on Dr. Bowman to let me know if we need to do anything else...

Will it ever end?
~Shannon

Wednesday, April 2, 2008 9:22 PM CDT

Yesterday Ethan wasn't feeling so hot and the school nurse called to have me come get him. I could tell she had something on her mind and really wanted to talk to me as well. I was floored when she said she needed some advice...I think deep inside I knew what she was about to say. There has been another diagnosis of A.L.L. in Ethan's school.

She was wondering how much she should do. Should she call? Should she have the kids make a journal for him? How much is too much all while thinking, how much is too little?

I did the best to answer her questions, all while my heart was beating rapidly in my chest. In the very instant she said there was another boy facing leukemia and just beginning his battle, the flood of memories came back to me as if it was yesterday we were told the horrible news.

I have come to appreciate our days of not being required to make lots of long visits to the Ft. Worth clinic. Not knowing what reaction the nasty medicine would give Ethan this time. I wonder if there will ever be a time when something won't trigger that horrible day in me. Each time it happens it seems to be so off guard. I will be living my life, enjoying my days and BAM...it'll happen.

Today, Ethan felt better and made it to school all day. He is excited about each day and I am slowly seeing him feel better. We have two more weeks until we see Dr. Bowman and get our counts again. The last two weeks Ethan hasn't felt great and I can only hope that we will only see improvement over the next two. I really want it to be a glorious visit with our Dr. B.

Please say a prayer for the newly diagnosed family. They are facing some tough days.

Go love those babies....
Shannon and the gang

Tuesday, April 1, 2008 9:17 PM CDT

I found this poem on another kiddos site. I rarely post these things, but this one really hit me...

A Pair of Shoes
Author Unknown

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
I can tell in others eyes that they are glad they are my shoes and not
theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women ache daily as they try and walk in them.
Some have learned how to walk in them so they don't hurt quite as much.
Some have worn the shoes so long that days will go by before they think
about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has a child with cancer.

Monday, March 31, 2008 9:08 PM CDT

Quite a few years ago there was a time when I wasn�t sure that we would see our son make it to his ninth birthday. Yes, he completed chemotherapy a little over a week ago and that is a huge accomplishment, but to this old mom and dad, reaching his ninth birthday was even bigger.

I guess that just proves that it has been an overly emotional and wearing week or so. Each day I watch Ethan I see him with so much pride. He has overcome so much in such a short life and boy we are so proud of the boy he has become. (No, I�m not ready to give him the title of young man just yet!)

So for a recap of the last week�

He took his last pills on Wednesday and was wondering why we were all gathered around him in the kitchen while he took them. I cried and hugged him, all while he was looking at me like I had three heads.

When Ethan was first diagnosed we talked to Dr. Bowman about Ethan learning to ride his bike. We had just started to try, but were not anywhere near ready to say we could ride. Dr. Bowman basically said we needed to wait. The risks of learning to ride your bike on a rocky hill with low platelets didn�t sound like a good plan to him. From that point Ethan decided he was going to wait. As we got farther into treatment I thought he would attempt to try again, but every time we mentioned it, he would have none of it. Thursday (the official first day without chemotherapy) I walked outside to see what he was up to and you aren�t going to believe this�he was riding his bike. Not only did he attempt to try it, he nailed it.

That night we celebrated with loads of ice cream (since we didn�t get to have it two hours before or after our chemotherapy, thus none before bed for THREE YEARS). Daddy got all kinds of topping and treats to enjoy and we made ourselves sick on ice cream.

That Saturday, we had a celebration of all celebrations. We all gathered at a local park, ate loads of pizza, followed by cake, presents and a pinata.

One special gift that Mommy and Daddy got him was Guitar Hero III. You see, the boy LOVES to go to the hospital for this main reason. They had it in the playroom. Now he can play it at home�.

If you made it this far�congrats. I honestly still feel as if I am living in limbo. I wanted so badly to be done, yet now I don�t know what to do with myself. The little ones and I are enjoying carefree days at home. I am starting to actually consider going back to work (waiting till we get that darn port out). We don�t have plans this week, no doctors appointments. Hopefully these days will continue!

Go love those babies�
~Shannon and the gang

Thursday, March 27, 2008 8:56 AM CDT

We finally attempted to send Ethan to school today. He has been running low grade fevers all week and complaining of a sore throat. He even has nasty white spots on his tonsils, but the strep test came back negative. We finally started him on antibiotics just to see if it would help. Last night was the first night since Sunday that he slept through the night and didn't come tell me he felt bad.

I am still waiting on that wonderful off treatment feeling, but it hasn't happened yet.

Go love those babies,
Shannon and the gang

Sunday, March 23, 2008 10:33 PM CDT

Life is wonderful...sort of.

Ethan is feeling rather yucky and running low grade fevers. Not sure what is up, but anticipate a call to Tina in the morning. I have no idea where his counts are (yes, that is driving me crazy) so I'm sure Dr. Bowman will want to see them.

I'll do my best to get back to the updating. Loads of pictures and fun stories from his OT party.

Go love those babies...
~Shannon and the gang.

Monday, March 17, 2008 9:46 AM CDT

Three more pills to go!

Ethan is feeling okay. His head has been giving him grief over the weekend. I am pretty sure it is a mild spinal headache, but thankfully Tylenol seems to do the trick. We are on spring break this week...lots of laziness in store.

I am off to do more laundry...WOOHOO!

Go love those babies,
Shannon and the gang

Friday, March 14, 2008 10:57 AM CDT

He did it. Ethan has had his very last spinal tap and bone marrow aspiration. He handled it like a pro, as usual, but is rather sore today. He is extremely excited to be "done" with pokes. Only six more pills to go!

We are not required to go see the doctor until the third week in April. This is odd. Each and every week we have gone on Tuesday night to get our blood drawn, then headed to Lewisville on Wednesday morning to get our chemotherapy. Seems strange to just be dropping that from our routine, but I can assure you, Ethan won't mind. We will still see our other specialists periodically since Ethan still faces many challenges from the effects of the chemotherapy, but our hope is that they will start resolving themselves as his counts return to a normal range.

Still loads of surprises for Ethan in store over the next week. I can see him bubbling with pride in himself and it makes me cry each time I think about all he has accomplished in his short life.

Go love those babies,
Shannon and the gang

Monday, March 10, 2008 6:50 PM CDT

We have started yet another week.

What week you ask?

As of Thursday, it is day 1 of week 146.

It is the last line on the last page of the huge pile of paperwork they presented me 3 years ago.

Don't know where I sit emotionally. Ethan is anxious about his spinal and bone marrow. Lots in store for the next few weeks...

Go love those babies,
Shannon and the gang

Wednesday, March 5, 2008 8:44 PM CST

I would like to announce that Ethan received his LAST leg shot today! Now, this does not mean he is done with chemotherapy, the remaining chemotherapy will be done via IV through his port. We celebrated with high fives and hugs (mom shed a few tears) and we bounced out the door. Dr. Bowman did say that he looks great and is excited to see him so happy about being "done!" We talked celebrations and milestones today, which Dr. Bowman thought sounded great.

We are excited, yet fearful as we approach our last spinal tap and bone marrow next week. I can't believe the time is here. I can't believe we are almost done. It seems like so long ago, yet it also seems like yesterday. Our lives have been forever changed. We have watched our little five year old turn into a wise young boy who is about to turn nine, all while going through things most adults can't fathom.

Thanks for continuing to check in on us and our baby...go love those babies.
Shannon and the gang

Sunday, March 2, 2008 8:07 PM CST

Life is moving along at a rapid rate. We are so excited as we are getting close to the end. I almost can't believe it is here. I don't want to speak for everyone, but I can tell you I am starting to get really terrified of finding ourselves again for our new life. I have no doubt we will be feeling great and having fun; I just hope we never forget what and who got us where we are. Our life will always be this way because of the many people who have helped us along the way.

Ethan seems to be feeling okay, just like normal, I don't want to give it too much credit since he is still on antibiotics. He will complete this round next week, so we will see what happens after that.

Thanks for checking in on us, I will try to get back to my regular updating...

Go love those babies.
~Shannon and the gang

Thursday, February 21, 2008 9:15 AM CST

We left the house yesterday morning, headed for clinic, at 8:30 am. We got home at 4:40...bleh! We saw Dr. Bowman in the morning, then headed to Denton to see another specialist, then back to Lewisville for IVIG! Fun stuff!!! In Ethan's words, it was boring, but the nurses were fun.

Counts look good and he is hopefully getting over all the crud that has been bothering him over the last few months. He is still on antibiotics, so I never consider it gone until he can go a few weeks without antibiotics. We are only 4 weeks away from the end of treatment and I can only hope that his body will bounce back quickly and start helping us git rid of the junk that has been bothering him.

Go love those babies.
Shannon and the gang

Monday, February 18, 2008 9:47 PM CST

Wow, it's been a while since I have updated. That is good news...mostly! Ethan is feeling pretty good.

Today we made a countdown chain to the end of treatment. We made all the links green, except the ones that are his big chemotherapy days, that way he would be able to see exactly how many more shots he is going to get. You could see his eyes light up as we hung it on the wall and he realized there isn't that much longer to go!

Saturday he gave me a few gray hairs by busting his forehead open somehow. He was playing in his room when he slipped and fell on something, causing him to have a pretty good gash on his head. The wound bled horribly and he came running up to me with blood dripping from his face. I knew is platelets were okay, so I wasn't too worried, but it did take us a bit to get it to stop. I had him hold pressure on it as I call Dr. Heym, who told me to just take him to the urgent care center and treat him like a "normal" kid. Off we went, in and out, with just a little Dermabond on his forehead he was ready to go.

Nothing but a little excitement around our house all the time to keep us busy.

Go love those babies...
Shannon and the gang

Wednesday, February 13, 2008 10:21 PM CST

We made it to clinic today and our counts barely made cutoff to get chemotherapy. Dr. Bowman did give him a 1/2 dose in hopes to not have his counts crash. I am not really sure where we go from here. I know the cutoff for school is 500, and is ANC was only 544. We are going to attempt to send him to school the rest of the week just keeping close contact with the teacher and nurse to hopefully keep him well!

I worry so much about him getting sick again, and you would think this close to the end we would go completely overboard on the protection..but there is honestly one little selfish thing motivating us. Never, not once, has Ethan ever been able to attend a Valentine's Day party at school. Every year since kindergarten he has received a "package" from school either at the hospital or at home sick, containing his cards and candy, but never got to see what it was all about. He is so excited this year to attend and since he is above the cutoff, we are going to let him.

So wish us luck as we are coming into full swing with cold and flu season and try so desperately to keep our little boy healthy.

Go love those babies...
Shannon and the gang

Sunday, February 10, 2008 10:21 PM CST

"The Spirit of Tom Landry Character Award recognizes a youth with courage, integrity, dignity and dauntless spirit who has battled blood cancer through personal experience or who has volunteered extensively on behalf of others who suffer from blood cancer."

Our son won this award.

We are so proud of him.

We have aspired beyond belief to keep Ethan normal through all that he has endured these last three years, and to see that others, besides ourselves, recognized that Ethan was truly amazing has been extremely humbling. I have mentioned before how much I cherish the fact that Ethan has never fought us to get his treatment; not once has the told us that he didn't want to do it anymore. He basically gets up every day, ready to approach it as another opportunity to get on with his life.

He doesn't really have time for cancer. That sounds so funny to say, considering how much of his life it absorbs, but it is true. To watch him play and interact with people, you would never know what he was going through. Most of the time, you really don't even know how horrible he feels. Sometimes, it takes Dr. Bowman asking the specific questions for Ethan to even mention it to anyone. This, I believe is what made him worthy of such an incredible award.

Of course, we were in the hospital the day the "big" event took place. Dr. Bowman did his best to try and boot us from Cooks, but quite frankly, I believe we were meant to just be there. Dr. Bowman, who had already RSVP'd so he could see Ethan get the award, received the award on Ethan's behalf. I hear rumors that his speech was amazing and there were few dry eyes in the house by the time he was done. I will receive a video copy of the entire event and will be sure to share with you all what he had to say. We had already as a family gone to film some footage for an Ethan montage to be played before he got his award. Today, I will share it with you. It may take a bit to load, but I believe it is worth it.

As I said before, we are so proud of our boy. Merely 6 more weeks to go until we are done with his treatment, then another week until he turns nine. We are gearing up for an incredible spring and I cannot wait!!!

Go love those babies,
Shannon and the gang

Saturday, February 9, 2008 8:47 PM CST

Ethan still seems to be feeling good. His little belly and face are rather swollen from the high dose steroids he required to get his breathing under control. We are happy that he is off it now, so we don't have to deal with the cravings and attitude anymore.

We are enjoying the weekend at home together and the recent hospital stay is "almost" a memory by now.

Go love those babies,
Shannon and the gang.

Thursday, February 7, 2008 9:13 PM CST

We are HOME!

Finally. The day took us quite a while to get here. I am not really sure about his cough. It is still there, but he is completely clear and is not wheezing. We are just going to watch him carefully and keep ups with the breathing treatments.

His counts weren't high enough for chemotherapy today, so we are going to hold off until next Wednesday and get counts to see where we go. I asked Dr. Bowman if this means we will move out end of treatment and he basically said NO! This is good news and makes me happy, too!

I have loads of news to tell you about Ethan and his Spirit of Tom Landry Award, but..I am tired. I will have to pull things together to share with you soon.

Thanks for checking in on us...go love those babies.
Shannon and the gang.

Wednesday, February 6, 2008 7:08 PM CST

Ethan still felt crummy this morning so it was a group decision to stay another day and get some rest and fluids. We continued the IV antibiotics and saw all of our favorite doctors: Dr. Bowman, Dr. Shelton and Dr. Hadeed. They all gave ideas for a future treatment plan, including a month of oral antibiotics that could hold us over until two weeks before the end of treatment. This would hopefully get us over what is ailing us, then within a month his body would stop getting knocked down with chemotherapy every time it tries to heal itself.

They are all going to talk in the morning and determine if this is a good plan. As doctor bowman said, hopefully we will be packing our bags tomorrow and heading home.

Go love those babies.
Shannon and the gang.

Tuesday, February 5, 2008 8:50 PM CST

We didn't get out today, Ethan just never seemed to really perk up. We did decide to give him a red blood cell transfusion since he was borderline low. They normally transfuse at 8.0 and Ethan was 8.5, but showing loads of symptoms. We are hoping this will make him feel better and in the morning he will be another child.

Pretty much an incredibly boring day around here...exactly what we want. All we can do is wait to see what his counts are like in the morning and hope they are high enough to let us bust out of this joint.

Go love those babies,
Shannon and the gang

Monday, February 4, 2008 11:12 PM CST

Nothing new to report on the hospital front. Ethan hasn't spiked a fever since early this morning, which is good. He seems to be feeling better, but not himself. I am not sure what is going on with him, hopefully tomorrow's blood counts will be a better indication of what the problem is. He did get an x-ray of his chest today, but no report as to how it looks.

He is hanging in there...and so am I.

Go love those babies.
Shannon and the gang

Sunday, February 3, 2008 11:30 PM CST

If only it was a mere email to the doctor today. We are now inpatient at Cook Children's. Ethan started feeling really crummy this afternoon and went from 99.9 to 103.7 within a few hours. He never did break the fever until the second dose of tylenol in the ER. He had it a little over 3-1/2 hours ago and is still hanging at 99.9.

Ethan's ear continued to bother him through the weekend and this afternoon decided to start draining. The ER doctor didn't want to go digging in too much to look, so he couldn't tell me if the tube is still in his ear drum allowing it to drain or if the ear drum had ruptured. His counts dropped dramatically since Wednesday...haven't seen the full work up, but his ANC went from 690 to 120. Not exactly what I expected. We do know we don't have the flu, thanks to a rapid flu test. Not sure how long we will be here, but you know us, we'll just do what we gotta do and just hope we are busting out of this joint quickly.

We had a busy week ahead of us and I will begin the process of notifying loads of people to determine where we go from here.

Thanks for checking in on us....go love those babies...
~Shannon and the gang

Saturday, February 2, 2008 9:40 PM CST

I'd love to say that we are still doing awesome, but Mr. Ethan is starting to feel crummy. He has a cough that has been bothering him a bit and his breathing has become quite the issue. Just recently we started doing all of these inhalers and new medications to fix his constant wheezing, so we are really working out the kinks whenever it doesn't work like it should. We are now doing his breathing treatments at least every four hours and have started him on high dose steroids to hopefully kick this into gear. We are to call the pulmonologist on Wednesday if we aren't better.

Unfortunately today he has started to complain that his ear hurts. He is really not feeling good and I am seeing him fall into that cycle of everything bothering him. I will see how he feels tomorrow, but anticipate an email of to Dr. Bowman to see what we should do. I am almost positive there will be a trip to a doctor on Monday.

I hope all is well with you and yours. Thanks for checking in on The Incredible Mr. E.

Go love those babies...
~Shannon and the gang

Tuesday, January 29, 2008 10:49 PM CST

I am happy to report our life is still incredibly BORING!

It is so AWESOME!

Ethan is doing his best at keeping up with his pals at school. He has developed a new fascination with ninjas and checked out several books about them from the library.

I'm not sure how many of you know about Ethan's fascination with non-fiction books, but let me tell you, this boy LOVES them. We just move from section to section at the library. Every visit has a different theme. Last time it was turtles and ninjas (Teenage Mutant Ninja Turtles, anyone?), the time before that it was bugs. I can't imagine what it will be next time. Each and every time we leave the library, it is with arms full of books that my boy reads within days of returning home. If we go more than a week without going to the library I can see him get itchy. The boy loves him some books!

Just a little fun fact about Ethan I thought I would share with you all. We all know how brave he is and how he handles all this crud he goes through. There is so much more to our little boy than just cancer...maybe I'll share some more of these little facts with you as we approach the end of treatment. Most of you have been visiting this site since the very beginning, other's found us a little later...no matter how you got here, I want you to meet even more of Ethan than just his health and treatment for cancer.

Go love those babies...
~Shannon and the gang

Monday, January 28, 2008 3:43 PM CST

We are still doing well. Taking care of a nasty case of thrush, but nothing fluconozole can't fix. He seems to be feeling well and is going to school everyday. We are still on that "we're almost done" high and being thrilled with life.

We are working on our science fair project and doing loads of normal things. We are so happy....

Go love those babies...
Shannon and the gang.

Wednesday, January 23, 2008 6:54 PM CST

Blood Draw - Check

Chemotherapy - Check

IVIG - Check

Feeling great and heading back to school - Check!

Man, life is AWESOME right now.

Tomorrow Johnny and I will be celebrating our 10th anniversary. I am so excited about this. I can't believe I have been married to the man of my dreams for the last ten years. We have had our ups and we have had our downs, but all in all, we have had a friendship that will last the test of time. Without him, I am nothing. He is my wall...he holds me up. He is my center...without him, I fall to pieces. I am so blessed to have him.

As you can tell, our life has taken a complete turn in the last few months. For so long we suffered through a process to determine what was ailing Ethan. Now here we are healthy again and enjoying life to it's fullest.

We are so blessed...

Go love those babies.
~Shannon and the gang

Saturday, January 19, 2008 8:52 PM CST

Still hanging in there and having a great time. Ethan is loving feeling so good and actually came in the house today after playing really hard and said, "I can actually play without getting tired too quickly." It sure is the little things that are so awesome, huh!

I actually don't have much to talk about, and it is so awesome to be so bored....

Go love those babies...
~Shannon and the gang.

Wednesday, January 16, 2008 8:10 PM CST

A great visit to see the doctors today. A wonderful visit with Dr. Bowman, saying Ethan looks wonderful. We are getting so excited as we near the end of treatment. We even discussed removal of his port today. The answer came with an open ended conversation, but it basically came down to...we'll see how he does and hopefully before summer comes, he will be port free!

I'll be honest, I am terrified. Life seems so surreal for us right now. It is hard to imagine how much will change when we are finished. The thought of only going to the clinic once a month just seems impossible. How can that be? I just can't wrap my head around it.

We also saw Dr. Hadeed today. He is the pulmonologist who helped us get Ethan's breathing under control and we are so thankful for him. He was absolutely pleased with Ethan's progress today and we don't have to see him again till March 19.

Speaking of March 19th. That will be IT! The VERY LAST DAY he will take chemotherapy. He will have his final LP and BMA on the 13th of March, but is still required to finish 7 more days of pills...leaving us on the evening of the 19th! I can't wait. There will be loads of cake, oodles of hugs and probably lots of tears.

Thanks for checking in on us...go love those babies...
~Shannon and the gang

Monday, January 14, 2008 5:05 PM CST

Ethan is still feeling wonderful. I feel like I sound like a broken record or I might jinx us, but I can't tell you how great it is to see him so full of energy and giggles. He is still making it to school and is student of the week. I know he is excited...it is fun to be "the" one for a week. He made his poster this weekend and was excited to take it to Mrs. Perrone. He laughed and said, most kids don't remember to bring it on Monday, so she will be shocked. (Funny, how such little things are so HUGE to us!)

I scanned it and attempted to piece it together for your viewing pleasure...I hope you enjoy it. We sure did have fun doing it together. I always have something in my mind for him to put in each section, but his brutal honestly and wording always wins...each statement was his own. Scary how mature he can be.

Go love those babies...
~Shannon and the gang

Saturday, January 12, 2008 11:02 PM CST

Ethan made it to school all week long and honestly, I could tell he was super proud of himself. I can't believe how great he has been feeling lately. The stay in the hospital, followed by the "right" antibiotic must have really done the job. It is so refreshing to get my baby back.

It is strange how you don't realize how sick they are until they get better...I can't imagine how I will fill when we stop pumping his body with that nasty chemotherapy and he starts feeling "normal" again.

Thank you for checking in on us...
Go love those babies...
~Shannon and the gang

Wednesday, January 9, 2008 8:05 PM CST

Three days down, two to go. Yes, my Ethan has been to school all week long. He is feeling great and I'm hoping he keeps it up. We went to clinic in Lewisville today and got our chemotherapy. We are hoping to make this our ONE AND ONLY trip to the doctor this week.

Ethan is getting really revved up about school and all the new projects he is doing for this semester. I love to watch his excitement as he learns new things. We might even have a history buff on our hands. Aunt Linda and Uncle Jim would be so proud of the excitement as he speaks about all thing doing with the government. I definitely see a trip to the east coast in the next few years to "learn" more about where our country started.

I'm off to get my little one to bed and hopefully get those adorable little boys settled down...

Go love those babies...
~Shannon and the gang

Sunday, January 6, 2008 7:28 PM CST

The weekend has been wonderful. Not many complaints from Ethan, with the exception of a few "my legs hurt!" He seems to be feeling better and has had a blast enjoying this beautiful North Texas weather. The kids have had a blast playing in their playhouse and running around outside.

We are getting prepared for the week ahead...haven't looked at the calendar to see what is on the books, guess I should.

I hope you are all having wonderful days this new year...please remember to take time to think about all the little ones that are fighting for their lives and go love those babies...
~Shannon and the gang

Friday, January 4, 2008 9:47 PM CST

Today was a good day.

No, we didn't find a miracle cure to make Ethan feel better, but his day was better than yesterday and all we can hope for is the same thing to happen tomorrow! He was in a great mood most of the day, which shows me his is feeling better. He had Dr. Bowman laughing at him as he wildly played with a little people toy castle.

We did have an x-ray of his pelvis to see if there were any issues that might be causing the leg pain. Nothing was seen and Dr. Bowman feels as if it might be muscular, so loads of stretching in the days to come.

The greatest thing happened while at clinic...we scheduled an appointment for his LAST bone marrow aspiration, spinal tap and methotrexate injection. This is AWESOME! We now know that in 10 weeks, we will be finished with chemotherapy. I was on cloud nine the entire way home.

I asked Ethan how he felt about being "done" and his response was so sweet.
He wasn't excited he would be getting no more shots
He wasn't even thrilled to be finished with his 6mp pills
(the nasty ones that he has to take on an empty stomach, thus no ice cream or milk before bed)

NO,
this boy,
he was sad that he would
"I'll miss my nurses!"

My boy...bless him.
What a sweet thing.

He was convinced that when we finished we would NEVER get to see Ms. Tina again. After I re-assured him that he would still see her monthly and we could swing by to say hi if he wanted, he was much better.

I'm off to get some rest...go love those babies...
~Shannon and the gang

Tuesday, January 1, 2008 7:34 PM CST

Here's to hoping for a better 2008!!!!

Ethan seems to be feeling better, not 100 percent, but better. We are going to attempt to head to Lewisville for counts and chemotherapy tomorrow. Depending on what Dr. Bowman says will determine the plans for the rest of the week. I do know that we have a follow up with the ENT on Thursday morning very EARLY in Ft. Worth, hopefully all will go well!!!

I hope the new year brings happiness and joy to you and yours. We have loads of plans for this year, like Ethan finishing chemotherapy, getting Wyatt in kindergarten and potty training Abagail. Those are a few of the things we have planned...I believe they are all also attainable. Wish us luck!

Go love those babies...
~Shannon and the gang

Saturday, December 29, 2007 1:29 PM CST

We were able to just get some IV antibiotics in Ft. Worth yesterday and come home. Dr. Bowman had conversations with the infectious disease doctor about how to handle the bacteria that is growing. Dr. Shelton assured Dr. Bowman that the bacteria is penicillin sensitive. Just like me, I could see the doubt in Dr. Bowman in this idea; considering we spent a week inpatient on penicillin based antibiotics and it started causing fevers a week later.

We are now trying clindamycin to see if it works. Depending on Ethan's week, we may just go to Lewisville for chemotherapy on Wednesday...if the week doesn't get better (almost to the point of perfect) we will go back to see Dr. Bowman in Ft. Worth on Friday.

Thanks for checking in on us...Go love those babies,
Shannon and the gang

Friday, December 28, 2007 9:57 AM CST

We are headed back to Ft. Worth this afternoon. Not exactly sure what the game plan is. I know Dr. Bowman is not wanting to make us go inpatient, but that doesn't mean he won't do it.

He did tell me that something popped up late yesterday or this morning on the cultures from his sinuses and his chest (meaning it was growing in both places); he wasn't exactly sure what it was, but is calling infectious disease to figure out where to go from here. In a very sad and twisted way, I am happy something grew. This means we might actually get a plan of action to make Ethan feel better. He is starting to stuff back up in his face and has the cough on and off throughout the day.

Thanks for checking on us, we are running out of steam emotionally, physically and basically in any way possible. Both John and I are very short with each other, our patience is gone. The unknown has been hard...please pray that we might be finally getting somewhere...

Go love those babies...
~Shannon and the gang

Thursday, December 27, 2007 2:11 PM CST

There are some days when life is just hard. This morning has been one of those.

Ethan, yet again, is running a fever.

His temperature was around 101 to 101.8. This is so confusing to me. The child is on antibiotics and anti-viral medications. I just don�t even know what to think anymore. I have emailed Dr. Bowman, who told me to give him Tylenol and call him in a few hours. The Tylenol seemed to have worked, but what is causing the fevers?

Tuesday, December 25, 2007 7:39 PM CST

What a wonderful day had at our house. The boys had so much fun opening their gifts and Abagail was loving her new kitchen. All was going well until we went to check on the ham...and the oven had gone out. Bleh.

We had been watching it closely for the last few days and knew it was coming. I would have almost put money on the fact that it would pick today to go out. No biggie, though...we managed to eat and have a great day anyways. All that mattered to us today was that we were all together today.

I was reading a journal of a friend of ours who lost their sweet girl to neuroblastoma in June of this year and attached was a link to the most wonderful video of Elesha I have ever seen. Elesha was merely 3 years old when she was diagnosed, but sent here to spread the message of God. She always sensed days when I was struggling with my faith and would come up with the perfect story to tell me. I had to share this video, it is perfect for today and the reason we are celebrating.

Go love those babies...
Shannon and the gang

Sunday, December 23, 2007 4:36 PM CST

WE ARE HOME!!!!

We were actually released earlier this morning, but we had loads to do before we got home. Shortly after arriving home, we had our first taste of Christmas with a visit from my Uncle and cousins. What a great way to come home.

Ethan is feeling okay. The pain is very manageable and should subside soon. Lots of appointments to attempt to make tomorrow, a few visits already scheduled for this week. Trying my best to organize all of his new medicines.

Take time to cherish your Christmas. Remember what it is all about...

Go love those babies...
~Shannon and the gang

Saturday, December 22, 2007 4:32 PM CST

We are not going home. Possibly tomorrow. Ethan is still having significant pain that is requiring medications. They have also ordered some IVIG and some more tests for this evening. Dr. Bowman will return in the morning to determine if we will be able to go home.

~Shannon and the gang

Saturday, December 22, 2007 9:33 AM CST

Ethan is feeling better; still like a kid who had surgery on his sinuses a few days ago, but better. Cabin fever is beginning to take over since he has been in isolation since we arrived. His mood is taking a turn for the south and he is just ready to go home.

Personally, I have set myself up for a fall. If they don't send us home today, I am going to be so bummed. I haven't seen a doctor yet, but know Dr. Bowman is on the floor. Hopefully soon...

Shannon and the gang

Friday, December 21, 2007 8:56 AM CST

A long night, but I think he might finally be feeling a little better. His throat hurts when he tries to swallow, he says it is mostly behind his nose. I am hoping it will get feeling a little better through the day.

The Tylenol lasted a little less than 3 hours last night, then he got another dose at 3-/2 hours. This lasted for a while, but had to be followed by a dose a morphine at 4 am. He slept till 8am and is laying in his bed with the most pathetic look on his face. His fevers have been running scary low..like 92.1 They have been watching him very closely and Dr. Heym saw him first today. He felt as if his body was still doing what it is supposed to do, but maybe at a slower rate (causing the low temp).

There is not much to do about it. We are going to order blood work since he is rather pale today and just watch him closely. Dr. Heym just gave him a big pep talk about not being brave and asking for pain medicine if he needs it.

Keep him in your thoughts...and love those babies.
~Shannon and the gang

Thursday, December 20, 2007 9:50 PM CST

Ethan is out of surgery. It took over two hours...probably his most intensive surgery since diagnosis. According to the doctors, things went well.

When I finally got him, he had tears in his eyes and complained of pain. We got him upstairs and into his bed (the only place he wanted to be) and he quickly turned over and fell asleep. A dose of Tylenol in his sleepy state and 1 hour later, he is still sleeping. I hope he is able to sleep all night or at least get some good rest.

I will see how he feels tomorrow and report to you all. Thank you so much for checking in on him.

Go love those babies...I can't wait to get home so I can love on my other two...I miss them terribly.
~Shannon and the gang

Wednesday, December 19, 2007 9:02 PM CST

Today was pretty quiet. Not much to report. Ethan felt pretty miserable all day, stayed in the 100's for his temperature, so not "officially" feverish to the doctors. Dr. Bowman came to see us this afternoon and after a few phone calls was able to get the surgery tentatively scheduled for 6pm tomorrow night.

We will have 24-48 hours after surgery for the fevers to hopefully stop. Dr. Bowman is hoping to be able to get us home by late Saturday or Sunday. We are also hoping for this to happen, but not letting our emotions or guards down about Christmas. I did see the desire to get us home soon, since he had mentioned even setting up IV antibiotics at home if he had to.

Have I mentioned lately how much I love that man?

Go love those babies...
~Shannon and the gang

Tuesday, December 18, 2007 5:02 PM CST

Not sure where to start. Ethan has seen loads of specialists and it has been determined that he is in need of a full sinus clean-out and a broncoscopy. His lungs show a dramatic change since November 2nd and looked at if they had streaks in them. The problem is...what are the streaks? Fungal? Bacterial? Abnormal-pneumonia? They will take samples of the fluids as well as his sinus stuff to do cultures and determine where we should go from there.

He is still spiking fevers even 24 hours after starting IV antibiotics. This will be something we will watch over the next few days to determine if he is on the right antibiotics or not. The cultures will eventually show us what the best antibiotic/medicine he should be on. Their plan at the moment is to continue the IV antibiotics this week and plan for the surgery on Friday. I am not sure how long they intend to keep us after the surgery. Definitely something that will be determined after the cultures start to grow. The latest comments on that subject ended with, "It all depends on what grows when you go home!"

Not sure what is going to happen. We are just sitting it out and doing our best to hold it together. We have had some great visits in the last few days and people are very generous to poor little cancer kids who spend time in the hospital around Christmas. Hoping we get to go home and be with Daddy, Wyatt and Abagail, but not feeling real positive about that situation. It will be difficult if we have to stay since Daddy is on call, there is no way he could come all the way down to visit with us. Of course, this is all just scenarios that John and I have been trying to figure out what to do during the "what if's!" Busy times with emotions flowing.

Go love those babies...
~Shannon and the gang

Monday, December 17, 2007 7:36 PM CST

We are officially inpatient. Ethan goes from feeling good to feeling bad. He spiked a good fever this afternoon and took quite some time to break it.

We have seen Dr. Hadeed, the pulmonologist, who is quite concerned. Ethan had a CT of his head and chest as well as a chest x-ray. The results were not good. They will be discussing things with the ENT and Dr. Bowman before making any decisions.

Lots of information given to me today, not sure what tomorrow will bring.

Go love those babies.
~Shannon and the gang

Sunday, December 16, 2007 7:45 PM CST

Well, it's back. Yep, the fevers are running about 101.3-101.7! Bleh.

I am to call Dr. Bowman tomorrow, he said no need to call unless he got suddenly ill or was over 102. I am so frustrated by this damn situation. It sucks so bad that our sweet boy is dealing with all this crap at Christmas time.

I just know we are going to have to go inpatient and he is going to miss the last 4 days of this semester at school (not even sure if he went enough this six weeks to get a grade!) This means he will miss his "Winter Party!" Do you realize that he hasn't made it to one holiday party since he was diagnosed. Pathetic...no reason a little boy shouldn't be able to celebrate with his friends.

Our attitude stinks tonight in the Ford house, we are having a serious pity party. Plans are to get in a better mood tomorrow...but for tonight, we are just going to be childish about this whole situation...

Go love those babies.
~Shannon and the gang

Friday, December 14, 2007 11:26 PM CST

We spent most of the day Thursday at the clinic in Lewisville receiving IV antibiotics and fluids. Ethan was still running about 99.4-99.7 most of the day. We also started him on Zythromyicin in hopes that it would help aid in the clearing of the ear infection. He woke up this morning feeling GREAT! No fever, back down to normal. We are hoping we might have done it. He will finish the Zythromycin on Sunday so we will know within a few days after that, I'm sure.

If Ethan does run another fever, we are going to go inpatient for some intense IV antibiotics, or something. Not sure what all Dr. Bowman would do, but he did say it would involve a 3-4 day stay at Camp Cooks.

Ethan is in great spirits and being such a doll. He is definitely in the Christmas spirit and ready for the day to come. Both Ethan and Wyatt can be caught singing Christmas carols...sometimes under their breath, sometimes out loud. Abagail will tell people goodbye, followed with a bellowing Merry Christmas. These are the days I cherish. I have to be the luckiest mom in the world.

Go love those babies,
Shannon and the gang

Wednesday, December 12, 2007 9:42 PM CST

The evening went downhill quickly. Ethan rapidly went from a 99ish degree fever up to 102. Loads of calls later, thank goodness, Dr. Bowman wanted us to hang it out in the house, no reason to risk getting something yucky from the ER. Our ANC was over 4800 Tuesday, so there is not a really big fear that he is in any danger by waiting till in the morning. I am worried about what he has planned for us...we have to get this ear infection to clear up.

I honestly don't know where we go from here...I do know I am happy to say I have the greatest doctor in the whole world doing his best to fix my baby. He called me personally this evening about 5pm to discuss Ethan, then called back at 6pm to re-check on him. Told me to call him tonight on his cell if I felt at all uncomfortable with Ethan's health. We are so lucky to have him. Recently there was a magazine article done about Dr. Bowman and Ethan. It was for the Promise magazine that Cook Children's distributes to their donors...I have copies and even PDF files if anyone would like to read it. I don't know about posting it on the website...might be some copyright issues. Please email me txfordfamily@gmail.com if you would like a copy, I would be happy to send it to you.

Go loves those babies...I am going to check on mine.
~Shannon and the gang

Wednesday, December 12, 2007 3:28 PM CST

What a day. Ethan was feeling well this morning, we headed to clinic only to find him starting to get a fever. He made it to 99.3 before he broke on his own. He did get his chemotherapy, counts showed he is still dealing with the ear infection, so it is most likely the culprit for the fever. He did rise up to 99ish again, but didn't go any higher.

If the fevers don't go away by Friday, Dr. Bowman will call in a different antibiotic. We were lucky enough (thanks to Nurse Tina) to get an appointment with a pulmonologist next Wednesday for the wheezing/cough he has had forever. Not sure what will come of everything, but I'm always up for another specialist to add to our team.

Getting more and more excited about Christmas, the kids can hardly contain themselves.

Go love those babies,
Shannon and the gang

Monday, December 10, 2007 8:56 AM CST

I sent Ethan to school this morning and he seemed to be feeling well. He was ready to go and couldn't stand the thought of spending another day at home. Yesterday was a good day for Ethan and I hope the week ahead brings more of the same for him.

Go love those babies,
Shannon and the gang

Saturday, December 8, 2007 10:46 PM CST

Today seemed better than yesterday for Ethan. He started out the morning about the same and running a temperature, but after a dose of Tylenol and some rest he seemed to feel better. He fever never did rise again throughout the day, so maybe we are getting this ear infection under control.

The boys and their sister spent the day hanging out and enjoying each other while I escaped for a bit to do some grocery shopping. There is a simple joy to be found in the opportunity to shop by yourself...not many unhealthy snacks for the kids made it into the basket (we just won't talk about the amount of Christmas chocolates that did) and they seemed satisfied with my purchases. All in all, a successful day in my book.

I'm off to bed, hoping tomorrow brings and even better day for Ethan and his pain/fever don't even happen.

Thanks for checking in on us. Leave us a not to let us know you were here...we love seeing who stops by.

Go love those babies...
~Shannon and the gang

Friday, December 7, 2007 9:51 PM CST

Today was spent at the Fort Worth clinic getting rocephin and fluids to protect us from whatever is causing Ethan to feel so horrible. He had a fever of over 101.5 today, so Dr. Bowman wanted to check him out. He is certain it is that nasty ear infection causing the issues, but wanted to cover all the bases just in case. His counts are reacting to the ear infection, they have sky-rocketed.

Poor kid. He is such a trooper for all the crud he has to endure.

He has headed to bed with no arguments for the last few nights, he must really need his sleep. Dr. Bowman gave us a prescription for more antibiotics to help him get over this issue and we are going to get a second opinion from another ENT to determine if Ethan needs to have his sinuses cleaned out or not.

FUN stuff...just what everyone wants to deal with over the holidays. My receipt for the pharmacy totals my prescriptions monthly...tonight while picking up one and dropping off another, I noticed the total for December is already $146.00. Merry Christmas, Ethan...here is another pill! I can't imagine what it will be by the end of this month. Boy, we need to get off all the antibiotics!

I am off to knit and relax so we can get ready for the weekend...
Go love those babies,
Shannon and the gang

Wednesday, December 5, 2007 8:59 PM CST

A wonderful visit today at the clinic. Dr. Bowman kept Ethan at 3/4 chemotherapy again, said he doesn't really want to bump it up until after Christmas (don't want him to crash during the holidays). Ethan's ear is officially infected, we are doing Ciprodex drops to see if it clears up, if it isn't done by Friday a call to Dr. Bowman will get us some antibiotics.

Not feeling up to par, I think that ear infection is doing us in. Hopefully he will feel better tomorrow, might keep him home from school just to be sure.

Go love those babies,
Shannon and the gang

Sunday, December 2, 2007 10:06 PM CST

Ethan is 5 days into his Zyrtec prescription and is already starting to look and sound better. I am so excited to see we might be getting somewhere with that horrible rash and cough. He seems to have loads of energy lately (enough to constantly keep his brother and sister wired up), so I am hoping this is the starts to a turn around for our boy!

Life is still moving on, we are busy getting ready for Christmas. Our kids are so excited, I can't even tell you. I am loving all the questions about Santa and the explanations Ethan is giving Wyatt. I am afraid the magic might be scarce with our boy...not sure if we will make it through this Christmas with it still intact.

This week is another appointment with Dr. Bowman, hopefully a full dose of methotrexate and good counts.

Go love those babies...
~Shannon and the gang

Wednesday, November 28, 2007 6:42 PM CST

We made it to clinic today. Several hours later, we were dosed up with IVIG and methotrexate. Ethan's counts were wonderful, so we increased his methotrexate dose to 75 percent. Unless there is a HUGE drop in counts, I can't see why they wouldn't go back up to full dosage next week.

We are in week 131, meaning we only have 15 more weeks of this junk. I can't believe it. I haven't looked at the calendar, but it looks like we may be ending chemotherapy right around his ninth birthday...what a present, huh?

There will be lots of tests to be done, and eventually the removal of his port. I am looking forward to the end as much as I am fearing it. We will have to find ourselves in a life that doesn't revolve around weekly appointments, blood counts and nasty procedures. I am confident, Ethan will keep going as normal, almost as if things really didn't change. I do know he will feel better, this is exciting.

I talked with Dr. Heym about the rash Ethan has and he started him on Zyrtec for allergies. He laughed and said we basically did the extreme allergy test ourselves...took him to a dry, low mold, pollen area and he cleared up; brought him back and wowser, all symptoms returned. Hopefully this drug will work, if not, he may refer us to an allergy doctor (yep, don't know the official title of those guys, haven't had to see them yet)!

Thanks for swinging by to check on us. Ethan is getting ready for Christmas, the boys are counting down the days of November so they can start their Advent Calendars.

Go love those babies...
~Shannon and the gang

Sunday, November 25, 2007 9:56 PM CST

The last week was spent with our dear friends in Las Vegas. We are completely nuts and decided to drive to visit them for Thanksgiving. The ride out was okay, the kids were pretty good...as good as kids can be after a LONG time in the car. We did stop for the night on the way out, so it wasn't too bad.

We spent the week visiting the various sites around Las Vegas. The kids loved the M&M store and seeing all the "cool" hotels. The really liked the Hoover Dam, even though it was a "little boring." Mostly they enjoyed spending loads and loads of time with their best friends. Ethan and his buddy, Sean, spent their time doing what all eight year old boys do: Video games, crazy, wild running through the house, and must to my dismay, lots of gossiping about girls. Wyatt and Emma spent their time playing "house." Over and over they would be lining up Emma's dolls, or saying "See ya at Dinner," as Wyatt went to pretend work. Those two were adorable. They played so well together and became the best of buds. Abagail spent most of her time running up and down the stairs. Who would know they could be so fun and needless to say, she slept well.

Thanksgiving day was spent enjoying being with our friends. We had some yummy food and were thankful for many things that day.

On the way home we made it to the Grand Canyon, that was far more impressive to the adults than it was to the kids. They enjoyed it, but since the cold front had blown through, it was very cold and they really wanted no part of that. We visited the visitors center, hit a few overlooks, then headed on our way back to Texas.

All was well, until Johnny got to the other side of Albuquerque, NM and hit yucky weather. There was snow and ice covering most of the highway and it lasted until we got to Amarillo. We didn't make bad time and it only took a little longer to get home. As much as I miss our friends, it is nice to be home.

The kids are getting ready for Christmas and are extremely excited. I am happy to announce that we have gotten the tree up and will continue to decorate over the next week or so.

Ethan is feeling really good, the dry Nevada air was wonderful for him...his cough disappeared the entire time we were gone and returned as soon as we returned to the moist air. We are headed for counts again on Tuesday then chemotherapy and IVIG on Wednesday. I am not really up for a long appointment this week, but we will survive, I'm sure.

I hope all of you had a wonderful Thanksgiving...for some fun giggles...go check out our little elves...

Our Elves

Go love those babies,
Shannon and the gang.

Monday, November 19, 2007 4:29 PM CST

Sorry for the lack of updates...we have been really busy. Ethan is feeling great, having loads of fun. We will have lots of pictures to share soon!

~Shannon and the gang

Tuesday, November 13, 2007 10:02 PM CST

The parent meeting went well today for Ethan's neurosphyc evaluation. There are loads of things we are hoping to get figured out during his official testing tomorrow. She will be able to get a report back to me by the first week in December hopefully. Then we will discover what we need to address and the best way to approach Ethan's learning and life experiences. I am looking forward to her report, but not ready to hear what might be in there. I fear we have had quite a few changes since his last evaluation, so I need to get my mind where it needs to be to attack this.

As far as his health is concerned, Ethan seems to be feeling well. I am hoping this continues and he just feels betters and better...

Go loves those babies...
~Shannon and the gang

Sunday, November 11, 2007 8:13 PM CST

The weekend went by with no fevers. WOOHOO! Lucky us. Ethan seems to be feeling good and hopefully will continue to do so throughout the week. We have a week full of plans. Tuesday is a parent consultation for his neuropsych evaluation and Wednesday is his full evaluation. I am not looking forward to the two trips to Ft. Worth, but if it helps us to determine where we stand mentally...it is so worth it.

Off to get ready for the week...go love those babies.
~Shannon and the gang

Friday, November 9, 2007 1:25 PM CST

Ethan went to school today, but I received a phone call about 9:20 that he was feeling bad. No fever, just chills and not so good feeling. I told her to give him a few minutes and I would call back to check in on him. The verdict...

He was rising in fever ands still feeling horrible. When I got there, he looked miserable, so off we went to get a blood draw. I called Dr. Bowman on the way and he agreed that was a good idea. I am still waiting for results. They should be back by now, so I am off to call Tina in Lewisville. Joyous Friday...

Go Love those babies,
Shannon and the gang

Wednesday, November 7, 2007 4:55 PM CST

Counts were way lower than I expected today. Not low enough to miss school, but almost. I will send him back tomorrow, then maybe take him Friday morning to have them drawn and see where they are. He has a few signs that show he might be on the increase, but I still would rather be safe than sorry. This will be the first time "I" have taken him for a blood draw just for my sanity. Don't think that is too bad considering how long we have been doing this...unfortunately, I think it shows how much I have been worrying sick lately about things.

I don't fear a relapse, I think that is one of the farthest things from my mind. Not to say I don't go there every now and then, just not something I worry about seriously. I worry about the side effects he has been facing over the last year. His poor little body is tired. He is having issues that are a direct reflection of the chemotherapy drugs we have been giving him for the last 3 years to save his life and keep the cancer away.

We will be setting up another neuropsych evaluation in the near future to see if he has developed any learning issues we need to be concerned with. Lately he has had quite the difficult time making decisions and thinking things through. Any process that requires deep thinking is very difficult for him. I know these things can be cause from just being and eight year old boy, but when paperwork warning us about the drugs we have given our son boldly state these are side effects, we want to be sure.

I know these are issues we will continue to face as Ethan gets further into and away from treatment. I had a dear friend tell me one day that, yes, she survived cancer, but now her life is in a continuous maintenance phase. She is thankful to have the opportunity to have these issues, but it is very disheartening to see what the treatment to take the cancer away has done to her body.

I am thankful everyday that we have Ethan here with us, but I also fear everyday for his future. Nothing will be normal. Will his joints and bones last him till his thirties? What condition will his heart be in by the time he is 40? How tall will he grow? Did the chemotherapy take away several inches, or just a few? Will he be able to have babies with his wife? These are the things that I worry about as his mother. There are many more that will cross my mind as he grows.

We are living our lives and being thankful for our days. As Thanksgiving approaches I realize we should do this everyday, not just the third Thursday in November.

Go love those babies..
~Shannon and the gang

Monday, November 5, 2007 7:43 AM CST

Ethan was fever free yesterday, so we decided to attempt school this morning. After waiting for 15 minutes on the bus, Johnny loaded Ethan up to take him to school...well...teacher in-service. This is disappointing on more than one level. So typical that the day he finally feels good enough to attend, they don't have class. Also, if he had been in school, I might have known that they were out today. Just another jab to let us know life is not normal for us.

He seems to be acting like he feels well this morning. We will have to see what the day brings for us. I am deciding what we are going to do...it will be an awful long day just stuck in the house.

Go love those babies...
~Shannon and the gang

Saturday, November 3, 2007 9:53 AM CDT

Where to start?

We made it to the ENT on Thursday and got some feedback we weren't expecting. Since Ethan has developed a hole in hear ear drum, the ENT wants to see if it will work as a ventilation tube. If not, our only option is to repair the ear drum then go back in and cut a hole into it for the tube. Kind of redundant, so we are hoping the first option works. Ethan's ear did not seem to be infected, just a little fluid, so we were at a loss for what was causing the fevers.

Yesterday we headed to the clinic at 9 am for some IVIG, but by the time we got there...fever of 101.6. Calls to Dr. Bowman were made and a list of to do's was ordered:
1. Access port
2. chest x-ray for the crackles in his lungs
3. Draw blood culture and CBC
4. Rocephine (a high powered antibiotic)
5. 2 hours of fluid
6. IVIG
7. more fluid
8. call Dr. Bowman to report

The resulting list caused us to be at the clinic till 4:30 in the afternoon, but thankfully we were able to come home. Ethan's counts are falling, but seem to be holding their own since he has been on half chemotherapy for so long. The chest x-ray was clear and we are hoping to not get a positive report of something growing in the blood culture. This morning he is running a temperature of 100.6, but we were instructed to just treat with tylenol unless he gets really bad, then to call the oncologist on call. Fun days.

Not sure what has gotten a hold of my baby, but it is making him miserable. Thank goodness a dose of tylenol and he bounces right back. Not sure what is on the books for the weekend, probably a bunch of laying around. I can take that...I have lots of knitting to do :)

Thanks for checking in on us...
Go love those babies...
~Shannon and the gang

Thursday, November 1, 2007 1:51 PM CDT

Boy what a difference a few days can make. I spoke too soon about Ethan feeling well. Come yesterday morning about 10:05 (about 10 minutes before I was to pick him up and take him to chemotherapy) I got a call from the nurse. Fever over 100. Bleh.

He was feeling horrible but had no particular complaint. Tuesday night he had mentioned his ear was bothering him, but nothing tragic. We made it to the clinic..counts were great (thank God) and Dr. Bowman made the discovery. This will sound familiar to you...his ear tube has fallen into his canal. This BITES! There are loads of other dirty words I would like to use to describe this situation, but I will refrain.

I made an emergency appointment for the ENT for today since the ear is already infected. Dr. Bowman gave us some antibiotics and told us, "Although it is inconvenient, we must wait until Friday to give some chemotherapy." So the game plan is still a little in the air, depending on what Dr. Vories is going to do. We are expected back in Lewisville tomorrow morning for IVIG and chemotherapy, but who knows.

I am going to stop reporting good things...it only leads to trouble. I will also stop planning events, oh, lets say...more than 2 hours from current times. Bleh...double bleh...

As you can tell, this is really ticking me off...BUT...lookie what I have...

Adorable Halloween pictures...what better way to end a post?

Go love those babies,
Shannon and the gang.

Tuesday, October 30, 2007 10:24 PM CDT

I can't believe it is almost November. Life is moving by so fast lately. Have I taken the time to enjoy it...I'm not really sure.

We are getting ready for Halloween tomorrow. The kids are very excited. Tomorrow we will be heading to the clinic for a visit with Dr. Bowman and some chemotherapy, then off to a Halloween party in the evening. I shall be making cupcakes and hoping to get them done in time...wish me luck.

Ethan seems to be feeling good. That makes me so happy...hopefully when we increase his chemotherapy he won't fall apart again.

I'm off to get some sleep...I hope.
Go love those babies...
~Shannon and the gang

Monday, October 29, 2007 3:42 AM CDT

Since Ethan's diagnosis, I have had many a sleepless nights. I would always manage to have things flood into my mind that I would rather not think about, I would either, knit, read, or head to the computer to do endless amounts of research on childhood leukemia.

Tonight, this morning (whatever) I have an entirely different problem...my mind is racing with such incredible thoughts about our Light the Night walk that I can't sleep. First of all...it was so amazing to have our families and friends come out to walk with us. We really put out the word and brought in lots of people. We were so happy to see so many people there to support our cause.

My son was amazing tonight. I know I say that a lot, and it is probably a biased opinion to say the least, but WOW. He begged and begged and we finally agreed...this time, he gave the speech. Tonight, he was introduced to the stage and was given the microphone...his words, although, short, were powerful. Full of honestly. I hope each and everyone of you there tonight know, what he said was not rehearsed. Those were his words. I would write them here if I remembered exactly what he said, but my Mommy memory just remembers they were amazing, and I was so proud.

Our team set a goal of raising $2500 this year. I thought there would be no way we were going to make it. That is a huge amount of money. I knew we were way overshooting our capabilities...BUT...NO...Thanks to our local bank, Northstar Bank, and some very generous friends and family, after turning in money tonight, I discovered we are only $14 away from reaching our goal. Can you believe that? There is still time...click the link above to donate...

This walk was emotional for me tonight. Ethan has done this walk for three years now. The first year we participated, he was swollen from the steroids, his legs and joints hurt constantly from the intense chemotherapy he was receiving in delayed intensification, and he definitely didn't have any energy. He started the walk on foot, but after about a quarter of a mile, was in the wagon. The second year, the steroids were still doing their number on him, his ankles were really bothering him from the a vascular narcosis he was developing, and even though he had made it to maintenance, he was still rather sluggish when it came to energy. Once again he started the walk on foot and made it over a full mile before having to get into the wagon to continue on. This year, it was different. The steroids are over, his ankle has gotten a little better, and his energy levels are starting to return since he has been on half doses of chemotherapy for the last month. He not only started the walk on foot, but he finished it. This has been his goal since last year and you could see the sense of accomplishment on his face as we headed to the car to go home.

Next year, Ethan will continue to walk as a survivor, but it will be more than that. He will no longer be a patient. We are looking forward to that and cannot wait to walk proudly with him as he passes through that finish line again.

Go love those babies.
Shannon and the gang.

Wednesday, October 24, 2007 10:15 PM CDT

Wow, it has been a long time since I have updated. Sorry about that. I am happy to admit that we had a wonderful day at clinic. Counts are maybe a little higher than I want, but probably right where they need to be. Dr. Bowman went ahead and kept Ethan's methotrexate at half a dose. We will see him next week to get an idea of how long he wants to keep this up...I know he is being cautious because he doesn't want make Ethan's counts plummet again.

Tomorrow we are headed to see the GI doctor and I honestly don't want to go. I am not in the mood. I know Ethan isn't either. I know she is going to tell us that all the results came back normal and he is looking "great!" I don't know if I want to deal with her tomorrow. To top things off, Ethan will have to miss a half day tomorrow...bleh.

We are gearing up for our Light the Night walk on Sunday. I am just thrilled about this event, it should be so much fun. I can't tell you how much we love the Leukemia/Lymphoma Society; everyone who works there has put out such the effort to make Ethan feel like the hero he is over the last few months. Hopefully Ethan will still be feeling great so he can be the "Honored Hero" they are looking forward to.

Go love those babies,
Shannon and the gang

Saturday, October 20, 2007 9:22 PM CDT

We are trucking along, not having any problems, just living our life like normal! So awesome. We are excited to be getting ready for the holidays to come. The boys really come alive during the Fall. It is there favorite time of year. First comes Halloween, then Thanksgiving...but most importantly it means Christmas is on it's way.

Today was spent carving pumpkins. Loads of fun. The boys always enjoy this. Of course, they always pick designs that are too complicated, so I do most of the work, but they enjoy the few cuts they do. Lighting them after dark always make them happy. Their sister was no different this year and was giddy as she could be.

We are happy...so lucky to have that...

(The pirate skull is Daddy's, the bat is Wyatt's, The goblin? is Ethan's, The skeleton is Mommy's and of course the kitty is Abagail's)

Go love those babies...
~Shannon and the gang

Wednesday, October 17, 2007 1:42 PM CDT

Counts are good and Ethan only missed about 3 hours of school. He was not too happy about me taking him back. I think he thought he was going to get to goof off all afternoon. He is still on half dosage of methotrexate, followed by full dose of 6mp. Another couple weeks of this so he can get completely back on his feet before we bang him up with full doses.

Tomorrow we visit the ENT, hoping all is still well with our ears. No pain since the last mention of it. Dr. Bowman said they were dry, so hopefully they are working right.

We are doing our best to keep our heads in the right direction....less than 6 months to go!

Go love those babies...
~Shannon and the gang

Monday, October 15, 2007 7:27 PM CDT

Life is moving along. Ethan is feeling good, complaining of ear pain, only once, so we will see. He has an appointment with Dr. Vories, his ENT, on Thursday...hopefully we can wait that long.

We spent the day finishing off our new creatures. The boys and I took on a project to make Stupid Sock Creatures (you can get the book on Amazon.com) and had a blast. Meet the newest members of our family...we are still working on names, which with my children, I think is appropriate, considering it took us over 24 hours after he was born to name Wyatt.

Unfortunately, we don't have many available adult size socks that are cast off and the kids want to make more. They are so much fun to create and as you can see...they are getting loved.

Tomorrow Ethan will attempt to return back to school. Hopefully this will happen. I am trying my best to get a routine around this house, but our life makes that really difficult.

Go love those babies.
Shannon and the gang.

Monday, October 15, 2007 9:20 AM CDT

Ethan seems to be feeling better today. I did have to keep him home from school due to the fact that he had a fever over 100 yesterday. I am hoping that he will be fever free today and get to go back to school tomorrow. It is amazing how much a little bug can affect his life.

Off to find something for the kids to do.
Go love those babies..
~Shannon and the gang

Sunday, October 14, 2007 12:07 PM CDT

The day is starting a little late for me. We had to go to the ER last night at 11pm. We arrived at midnight and started routine, blood counts/cultures/antibiotics. Thank goodness our counts came back high and they sent us home. The only bad part about that is I had to drive home at 3am, and let me tell you, it was a long drive home. My husband is a doll and let Ethan and I sleep in, entertaining the little ones all morning.

Ethan seems to be feeling better this morning, not near up to par, but at least he is better today. Not sure what the day will bring, possibly more fever, but hopefully none. I have emailed Dr. Bowman to let him know the situation, not expecting a call today, but wouldn't be surprised if he did. He is one amazing man, who loves our kids like they are his own...

I'm off to vegetate on the couch and watch football.
GO COWBOYS!!!

Go love those babies,
Shannon and the gang

Thursday, October 11, 2007 10:59 PM CDT

You know there are moments when instantly it is obvious it was NOT good that you forgot the camera. Tonight was full of those moments. Wonderful moments.

I was asked to speak again for the Leukemia-Lymphoma Society, but this time, not for Light the Night, but a high-end fundraising event. We are always honored to have Ethan represent the society and all they do to help us out. We have the same mission to find a cure and anyway we can help...we are there. We headed to downtown Dallas with Grams and Grandpa in tow for this event. It was held in the most fabulous loft with catering and open bars. The food was fabulous and the dessert...AMAZING!

I was nervous as can be, but was re-assured by many people that the event coordinators had heard me speak before and wanted me there...ya, that helped with the nerves. I sailed through my speaking feeling like I babbled, but all it in did well. Ethan stood on the stage next to me being Ethan. The crowd gave us a standing ovation, and I cried. Following my speech, they had a live auction for some pretty impressive trips. The autioneer was kind enough to let Ethan get in on the fun and it was a riot. I am in so much trouble...this kid was meant for the spotlight.

As the evening progressed, they weren't pulling as many funds as they hoped, so they got Ethan back involved. There were women in bidding wars over a pair of earings and Ethan was really getting the hang of the process. He can work a crowd and had them eating out of his hands. All in all, a wonderful night. By the time the weekend is over, the event will have exceeded their fundraising goal by nearly $100,000. It makes us so proud to be a part of something so important.

So Ethan is feeling great and on cloud nine after all the pep talks he got tonight. He made some great friends and has lots more people praying for his success as he finishes off his last few months of treatment.

The Leukemia-Lymphoma Society has done so much for us lately. They not only fundraise so much for research and help out families through patient services, they have taken us in as a family and given us so much support emotionally to keep us going through these last few months. We are so thankful for them.

I am off to bed...
Go love those babies...
~Shannon and the gang

Thursday, October 11, 2007 3:54 PM CDT

Well...3 days down, the kid is on a roll. I am so proud of him for making it at school.

Clinic went well yesterday. Counts look good and we are still at 50 percent of the normal methotrexate dose as we ease him back up to the full dosage.

Off to find something for the kids to do...
Go love those babies...
~Shannon and the gang

Tuesday, October 9, 2007 9:58 PM CDT

He did it. Yep, just two hours short of a full day, but that was the districts fault since it was early release day. WOOHOO! I am so proud of him. He came bounding in the door like he felt wonderful. He was full of stories and happiness about his day. I was so happy...we were both happy.

We went tonight for blood counts. He will go to school tomorrow and come home again at 1:00 pm, then we will head to the clinic for chemotherapy. I am anxious to see what his counts have done over the last week, but I am feeling sure that they are still good.

Thanks for checking in one us. I know you are here through the good times and bad. Tonight, rejoice with us in the good times.

Go love those babies...
~Shannon and the gang

Monday, October 8, 2007 11:03 PM CDT

HOW 'BOUT THEM COWBOYS!!!

What a game! I stayed on the edge of the couch the last 8 minutes of the 4th quarter.

Getting geared up for school tomorrow. Please, please...lots of good thoughts as we try to make it a full day. I am remaining positive...he can do it.

I know he is ready to spend some time with his friends and enjoy a day at school. He just wants to be normal.

We had a lazy day today in hopes that it would help tomorrow. He seems to be feeling good, hopefully it will continue.

Go love those babies...
~Shannon and the gang

Sunday, October 7, 2007 3:25 PM CDT

We are feeling good and having fun. Lots of driveway football today. A little baseball action and lots of wishing for Fall-like weather. The entire gang is behaving (you know I just jinxed it) and we are getting geared up for the week ahead.

Ethan is a little nervous about going back to school. I think he is afraid he might get sick again if he tries. Need to work that out with him. We have talked about it not being school making him sick, just trying to get over some yucky times. He is out tomorrow for teacher workday, then back on Tuesday. Lots of good thoughts for him that it goes well.

More football to watch...
Go love those babies...
~Shannon and the gang

Friday, October 5, 2007 8:34 PM CDT

We had a much better day today. No fevers, no trips to the clinic...a much better day indeed.

Of course, with feeling better, we had loads of attitude, back-talking and complete irritation by Mommy. We are going to attempt to return to school if nothing happens before Tuesday.

I am not sure what the plans are for the weekend. Hopefully there will be less attitude, back-talking and complete irritation by Mommy.

Go love those babies...
~Shannon and the gang

Thursday, October 4, 2007 9:46 PM CDT

Where to start?

What a day. Ethan got up this morning feeling okay and ready to tackle school. We were very excited to get him there. John gave him the "Buddy, please try to hang in there, it will be hard since you haven't come in a while, but you can do it!" Speech...BUT

at 9:30, the phone rang. Yep, the nurse. 100.6 degrees.

UGGGHHH

I started making phone calls before I picked him up. Called Tina in Lewisville and she said check him when you get there and call me back. When I saw him, I knew it was bad. I checked him again and he was 102.3...Poor baby. We got out of the school and headed home while Tina was calling Dr. Bowman for his orders.

I just knew we would be headed to Ft. Worth for an inpatient stay, but Dr. Bowman was sweet enough to let us go to the Lewisville Clinic to get Rocephin and fluids while we waited on the CBC from the Lewisville hospital to come back. (We also sent them a culture to check and make sure we aren't looking at a blood/port infection) Thank goodness we got back counts that showed Ethan's marrow is functioning just as we would want it to when he gets a fever. They rose.

His fever went away with Tylenol and his counts went up so we were lucky enough to go home for the evening. Our bags are still packed because we could possibly get a call from the hospital if his cultures grow something. We are watching to see if his fever comes back before we get a game plan for tomorrow. The Rocephin he got today will cover him for 24 hours, so if he gets another fever he will most likely require more tomorrow.

So, life is crazy again. I am not sure where we go from here. We are holding chemotherapy again, not sure how I feel about that. Not sure what will happen but I will update when we know more.

Not sure if I will ever know more, but I can pretend.

Go love those babies...
~Shannon and the gang.

Wednesday, October 3, 2007 9:35 PM CDT

A good day indeed. I am happy to announce that Ethan's counts have risen enough for him to go school. I hope that he is still feeling good in the morning. Tonight he has been complaining about not feeling "right" which I am hoping just has to do with him getting IVIG. We will see in the morning.

As I said, the day went well. Lots of conversation with Dr. Bowman and the nurses...medical and personal. We are such lucky people to get treated by people who love us so much.

Go love those babies.
~Shannon and the gang

Monday, October 1, 2007 10:39 PM CDT

Still hanging out in isolation at home. Fevers finally went away. Never hit the magic mark so we dodged a stay this time. I could tell over the weekend he had moments of not feeling good. He gets quiet when he doesn't feel good and sort of blends in with the couch. Then suddenly, when he is loud and playing again, you realize just how horrible he really did feel.

Going for blood counts tomorrow night in full hopes that when we arrive at clinic on Wednesday we will be doing the "rebound" dance. Not sure what kind of dance will occur if those counts haven't come up, but I promise you...it won't be a pretty one.

Not many changes, same old, same old...if counts are good, after IVIG on Wednesday, he will get chemotherapy, then on Thursday morning...HE WILL GO TO SCHOOL. He needs to go. He is getting a little fiesty, really sick of his brother (never Abagail...she's an angel...ha), and honestly...I think he is sick of me, too! Doing all I can to remember he is tired of missing school. He is pushing me to my limits, no more than any other 8 year old does, but man, he knows my buttons. The wierd thing...I love that he is doing this. It means he feels good. It means I was blessed to have another day with him. Thank God for a boy who is driving me crazy...I'd have it no other way!

Go love those babies...
~Shannon and the gang

Sunday, September 30, 2007 11:46 AM CDT

Ethan is still holding steady in the 99's but hasn't hit the magic number thank goodness. I am hoping this is his body building white blood cells or something.

We are hanging out, watching football hoping those fevers stay away.

Go Cowboys and Go love those babies...
Shannon and the gang

Saturday, September 29, 2007 11:37 AM CDT

We are officially on fever watch. Johnny and I are preparing like crazy for another inpatient stay in full hopes that if we are completely prepared (aka, babysitter on call, all clothes clean and ready to be packed, fridge stocked for snacks, etc...) we won't have to go.

So far his temperature is 99.9-100.4, and if he stays below 101.5 we don't have to go. He has already apologized this morning for the fever, I hate that as much as we have tried to hide it, he sees the stress that an inpatient stay has on our family. I know he worries about Daddy having to miss work or the babies having to stay at Mamaw's for a while. Those are things that an eight year old shouldn't have to worry about.

Our life has been a rollercoaster ride the last month and quite frankly, Johnny and I are tapped out emotionally. Living life from moment to moment, doctors appointment to doctors appointment, cbc to cbc is getting old. We have come so far in his treatment and man, 2 years, 8 months, 2 days is a LONG time to live this way.

Please keep us in your thoughts today...Go love those babies...
~Shannon and the gang.

Thursday, September 27, 2007 8:54 PM CDT

We are holding steading in a waiting pattern.

Life is slow when you are just waiting for numbers to come up. There really are no plans, just waiting. We are going to wait until next Wednesday to re-check counts. Ethan will get IVIG next week regardless of if he gets chemotherapy or not.

The biggest stinker is that we are officially on "hold." Usually when counts are low this far into maintenance you just skip this week and move onto the next. Since Ethan didn't rebound last week without chemotherapy, we will wait to continue on with the protocol until his counts are above the limits. I know this is what we should be doing, but it doesn't mean I have to like it.

I am still pondering if I should get the ball rolling on homebound school or not. One part of me says I should, but the other part of me tells me that I don't need to. If his counts come up, most likely they won't drop low enough to have to stay out of school again. Maybe I just have really hopeful thinking, but come on...Do you blame me for being hopeful? I'm only wishing my little boy could be normal.

The plan for tomorrow is cookie making. Basically, because, there is nothing more fun than using cookie cutters, icing, sprinkles and colored sugar to lift your spirits.

Go love those babies...
~Shannon and the gang

Wednesday, September 26, 2007 12:45 AM CDT

We attempted to start chemotherapy again today, but no go. His counts are holding steady very low. We are awaiting Dr. Bowman's opinion on what we are going to do. His is unable to attend school due to low immunity, I am not sure if I should start him in homebound or not. We are just in limbo.

He is still not feeling up to par. His tummy hurts most of the time and the tummy issues are still a huge part of his day. I know he is tired of it. Poor kid. We are doing our best to keep up in school by doing lots of worksheets. I even went to the library and got him Flat Stanley so he could participate in this project. I have been looking forward to doing Flat Stanley since he was in Kindergarten and his cousin sent him to me. I am so bummed he is missing out in that fun at school.

Thanks for checking in on us...Go love those babies...
~Shannon and the gang

Monday, September 24, 2007 10:41 PM CDT

Ethan seems to be hanging in there. I can tell he doesn't feel 100 percent, but he is doing his best. He has his moments of feeling okay, but every now and then you can just see in his eyes he isn't doing well.

We are doing our best to keep our heads up as we are under house arrest.

Go love those babies...
~Shannon and the gang.

Monday, September 24, 2007 10:54 AM CDT

Well, Poo....

Ethan's counts didn't rise, they dropped. His counts are far from being good enough to attend school. I am quite bummed about this and so is Ethan. It is upsetting to so desperately want to attend school and not be able to.

The game plan is to start holding all chemotherapy until counts rise and recheck counts on Wednesday morning to see where we are.

Thanks for continuing to check on us. Your thoughts and prayers mean the world to us. Leave us a note to let us know you were here...Ethan loves to read the messages.

Go love those babies...
~Shannon and the gang

Saturday, September 22, 2007 11:09 PM CDT

Ethan seems to have his moments of feeling good and feeling bad. He has absolutely NO appetite, but has ate a few things today. I think he finsihed 1/2 of an egg sandwich for breakfast and a 6" ham subway for dinner. Not enough to make us happy, but it is better than nothing.

We spoke to the dietician yesterday and she gave me some tips to make sure we take advantage of the chances when he does feel like eating. Right now he is okay with his weight, but she said she does not want to see him loose anymore. More stress...just what he needs.

I am taking him to have his blood drawn tomorrow and will be calling Tina at the Lewisville Clinic first thing Monday morning to see what they are. When we left the hospital they were too low to get back to school, hopefully they will have risen enough for him to go. Poor kid has only been about 3 or 4 days to school all year.

I am hoping for an uneventful day tomorrow...we have lots of football to watch, I'm sure. go love those babies...

~Shannon and the gang

Friday, September 21, 2007 5:49 PM CDT

Things sure do change when you get good results back on questionable tests. Ethan was released today and we are HOME! WOOHOO! His counts came up a little and since he hadn't spiked a fever, they decided to send us home.

What a change from yesterday when I was told if things didn't look better soon, we would be doing a bone marrow aspiration to rule out relapse.

He is still feeling rather sluggish, but has gotten most of the gas out of his belly, so the discomfort is mostly gone. He is having bouts of nausea, but nothing we can't control with medicine.

Thank you to everyone who checking in on us...

Go love those babies...
~Shannon and the gang

Thursday, September 20, 2007 3:20 PM CDT

Not really sure about a game plan, I think it is the typical. We wait to see what counts do or if anything grows in the cultures. This is a long and frusterating process, could be easy to really complain, but sometimes just not worth it.

We have seen both H/O and GI doctors today.

GI feels like he has an ileus (aka, the bowels aren't moving like they should) and basically just a huge tummy full of gas. This means we aren't moving the gas like we should and need to do our best to walk as much as possible. He is miserable when he stands, so it has been an effort...hopefully soon he will be up to more walking.

H/O said we are doing the typical fever/low count stay. Not sure how long it will last. The counts have to make that upward trend before you get busted out of the joint. Not what you want to hear, but you know this is where you should be.

I recieved two phone calls within 5 minutes this morning with incredible news. Ethan's latest peripheral blood MRD was completely negative. NO BLAST, NO SIGNALS...NOTHING...just blood! Exactly what we wanted to hear. Most likely the last test was a glitch, not a comforting answer, but must be understandable since we are on a trial. Made me feel great that everyone was as excited as we were. Tina at the clinic, Amy, our nurse practitioner and Dr. Bowman. I was lucky enough to pass the news to Dr. Heym...made his day...and a rotten day he has had so far.

Right now, Ethan is taking a nap. Not feeling wonderful, trying to spike a temperature. I'm just updating his site and knitting away...thanks for checking in on us...

Go love those babies...
~Shannon and the gang.

Thursday, September 20, 2007 9:03 AM CDT

Guess where we are....

Yep....

Camp Cooks!

We ended up in the ER last night about 9 pm with severe pain and fever. We were admitted through the H/O department and GI's will consult with them. They did an x-ray to see if there was a perferation from the procedures, but according to the ER doctor everything looked fine.

Our counts dropped dramatically from Tuesday evening to early this morning. Not sure what the gameplan is yet...haven't see Dr. Heym. I'll update later when I hear something...

Go love those babies...
~Shannon and the gang

Wednesday, September 19, 2007 2:39 PM CDT

We are back home from the procedures this morning. Dr. Hunt said everything looked normal from the scope, she did do some biopsies and said they might take up to two weeks. She did notice his bowels were still not clear, even after three days of prep. Said it might be that he is getting backed up...but not sure about that.

The anestiologist said Ethan had an extremely difficult time in the OR. His breathing was sporadic and he is wheezing while breathing in and out. These things are not related to any asthma/cold issues and probably have something to do with an inflammatory issue. He was really concerned and said it needs to be addressed, not as an emergency, but it definitely something to be concerned with. Just what I wanted to hear...more issues. Poor kid.

Ethan is having a really rough time of it, right now. Probably the worst he has been after any surgery. He is just plain miserable (do you blame him?) Hopefully he will start feeling better as the evening progresses.

We still haven�t heard anything from St. Jude, but believe me, I have an email into the doctor about it.

Thanks for checking in on us...go love those babies.
~Shannon and the gang

Monday, September 17, 2007 5:05 PM CDT

I decided to keep Ethan home from school today. There have been entirely too many trips to the potty overnight and today for him to function properly at school. He is getting concerned with his upcoming procedures and is asking tons of questions. I am just answering them the best I can without showing my shear anger for the fact that he has to endure them.

Off to find exactly what Ethan wants for dinner tonight...

Go love those babies...
Shannon and the gang

Sunday, September 16, 2007 5:31 PM CDT

Ethan has started his prep for his procedures that he will have on Wednesday. Unfortunately he must drink 8 oz. of magnesium citrate (the sparkling laxative) for the next three days. Hopefully it will not intefere with school and he will be able to go tomorrow. Tuesday he must be on a clear fluid diet only, so I am not sure if he will go to school.

We are staying busy having fun. Lots of wiffle ball baseball outside (a little inside, too!) Trying to keep ourselves busy while we hope and pray for good results from our tests.

Go love those babies...
~Shannon and the gang

Friday, September 14, 2007 7:00 AM CDT

On another note about the cells in his peripheral blood. Please remember, they were only seen in his MRD, there are no blasts showing in his regular blood panel.
~sf

Thursday, September 13, 2007 7:47 PM CDT

I would be lying if I told you the last few days have been awesome, or even okay. We have been worried sick about something I�m not even sure if we understand. I received a phone call on Saturday morning about the results from Ethan�s testing done at St. Jude last week; his bone marrow and spinal fluid were completely clear, which is incredible, but one of the test came back odd. His peripheral (the blood in your veins) MRD (minimal residual disease) came back with a signal. As far as I understand, the signal is what happens when the cells we don�t want to see are spotted. Mind you this MRD can see up to 10,000 cells at once, this is far more than the capability in a normal blood lab, so these cells would not be typically seen if not on the clinical trial we are involved in. We were asked to come back to Fort Worth to get more samples of peripheral blood to be sent off to St. Jude.

Today during our visit, I was able to ask lots of questions. First off...what does this mean? Well, that answer is complicated. This is the first time EVER any patient on the trial has signaled in peripheral and been completely clear in marrow. Discussions with the head leukemia doctor at St. Jude and Dr. Bowman have been had and the great thing is: HIS MARROW is CLEAR! What the cells in his peripheral mean? There is no clinical history to even determine what this means. The best answer (although, not sure if it is the one I want) is �all in all, it warrants further evaluation!� We have sent a sample overnight to St. Jude today and should have results sometime next week. Things can change dramatically depending on results, but as of right now, the plan is to continue to stay on track with our current protocol and send samples to St. Jude regularly for evaluation.

If that wasn�t too much information for you, that wasn�t all of today�s visit. Ethan also has �crackles� in his lungs so required an x-ray. Things came out clear, so we are just going to keep an eye on his cough and assume it is allergies.

After clinic, we headed to GI. She did determine Ethan would require an upper and lower scope and that will happen next Wednesday. I am extremely discouraged that Ethan even has to go through this procedure. I know he will be asleep (THANK GOODNESS) and won�t remember, but still, this is something NO eight year old boy should have to do. I am just hoping that we discover the reason for his tummy issues.

So life has gotten crazy again, not really sure if it ever calmed down. Not sure where we all stand emotionally. We are doing our best to �not lose sleep� worrying.

Bleh...the life of a cancer parent is hard...

Go love those babies...
Shannon and the gang

Wednesday, September 12, 2007 9:37 AM CDT

Things are moving along in our house. Ethan didn�t make it all day on Monday for school. He tried, but had to come home about 10 am. Yesterday he made it all day. We were so proud. He said his head hurt a little, but he could handle it.

A few appointments scheduled for this week. I am busy as ever trying to keep the little ones busy. Yesterday we played at the park with my sister and her son while having a picnic. They enjoyed that, of course, Ethan was jealous. I just can�t win sometimes.

I am off to do laundry...FUN, FUN...
Go love those babies...
~Shannon and the gang

Sunday, September 9, 2007 10:04 PM CDT

Wow, what a game. We are one lucky family. It was a fun day at the ballpark.

So exciting to feel so good and welcome at some really incredible seats...

Unfortunately, the rain came in quickly and they had to call the game...we were so impressed at how quickly they get the HUGE tarp across the field.

So Daddy had to take a picture of Ethan and I waiting...

Then we headed up to get some snacks, oh, and jump in some puddles, because their Mommy taught them that is what they are for...

Then head over to the �kids� area of the ballpark and wait patiently for your turn to help pick up and hit wiffle balls...

Then you head to the restroom to get ready to go back to your seats since the game is back on and hear Sammy Sosa hit a home run, the most important thing that we were waiting on all day. Finally caught a glimpse of Sammy hitting a single and it made up for it all. FUN TIMES :)

After four hours at the ballpark and only four innings, Wyatt had his fill of baseball. He loves it, but a four year old can only hang on so long in a little seat. We all had fun, and got home just in time for bedtime...

Ethan is going to attempt to make it to school tomorrow. I hope he can do it all day.
Go love those babies...
~Shannon and the gang

Saturday, September 8, 2007 9:20 PM CDT

My mom used to say, �Someday you�ll get one just like you and you�ll finally understand why I have so many gray hairs!� I don�t think I really understood that statement until recently. If she were still here today, she would be laughing wildly at all the gray hairs I have.

You see, she also said I was the one who was full of difficulties. Whenever I had something medical come up, I always did it big. Busted open my chin and a horrible bite on my tongue playing on the bed at four. Poison Ivy�horrible, so bad I required steroid shots. A mysterious rash in fifth grade that stumped 3 different doctors. Another trip to the emergency room when I fell trying to put up Christmas decorations. Not many other trips to the doctor, I rarely got a cold and don�t remember having the flu. Missy, yeah, she had her various trips to the doctor for colds, ear infections, and the flu, but I don�t recall one trip to the Emergency room

Now, you might find this odd, but my �one� is not Ethan�it�s WYATT! That boy! Several times we have had those, �Oh my gosh, do we take him to the ER?� moments. With Ethan, it seems like we �know� what to do. His stuff is planned. If he spikes a fever we take him. He is so cautious, that he rarely injures himself, but WYATT�oh no, that boy knows no fear. He is a wild man and unfortunately, more times than once it has gotten the better of him.

Tonight while horsing around with this brother his face met the edge of the headboard on his bed. Immediately it was swollen and busted open. He sat on the edge of the table barely crying as I kept looking at Johnny and waiting for him to tell me to take him to CareNOW. His injury didn�t bleed much, and I�m sure it looks far worse than it is. It is bothersome to him, but he just sat there and told me, �Just put a bandaid on it Mommy, it�s FINE!� Little turkey. A few butterfly strips later and he was as good as new (just don�t touch his face) and back to playing.

So I sit here tonight a few more grays, I�m sure. He is only four�I�ve got a long way to go with that crazy little boy. I can only imagine what he�ll do to me when he is in his teens.

On the Ethan front. He has been suffering from a horrible spinal headache since Tuesday. It progressively got worse throughout the week and as I said before, started to make him vomit from the pain. Today he is feeling far greater and was actually up and playing. I was so happy to see him slightly back to normal. I am hoping he gets to feeling even better tomorrow, we are headed back to the ballpark to watch those Rangers.

This will be Wyatt�s first game and we have generously been donated some AWESOME seats for tomorrows game and can�t wait till tomorrow to meet the family who did so. They are going to meet us at our seats and deliver some things for the boys. . Ethan is going to be so excited�the seats are close and he loves to get surprises. I am hoping for a homerun tomorrow, I can only imagine how thrilled the boys would be when the fireworks shoot off and the crowd goes wild. Watch the game, you just might see us!

Go love those babies�
~Shannon and the gang.

Friday, September 7, 2007 2:45 PM CDT

Ethan has officially missed the entire second week of school. He has a spinal headache that is really bothering him. Yesterday the pain would get so bad when he sat up that he vomited a few times. I feel so bad for him.

Today I spoke with Dr. Bowman and he has gotten him some Tylenol 3 and also placed him on Flagyl. This medicine is supposed to help with c-diff. We aren't certain if Ethan's tummy problems are from c-diff, but let me tell you, we are willing to try anything. We haven't cultured his poo in a while and Dr. Bowman said he would really like to see us try to get this cured without having to scope him. He has an appointment with the GI doctor next Friday and I know her full intent is to schedule a scope.

We are hanging in there, feeling rather blue from the stuff we are dealing with. Wishing Ethan could just be a normal boy...

Go love those babies...
~Shannon and the gang

Thursday, September 6, 2007 12:46 AM CDT

I have seen this many times on various pages I visit on a regular basis and I figured I should share it, too! September is Childhood Cancer Awareness Month and the "awareness" just doesn't seem to be there. Enjoy this video and be sure to scroll down for a video I have made of Ethan since his diagnosis. His body has changed so much...and he has aged many years emotionally.

Tuesday, September 4, 2007 7:36 PM CDT

NOt much time to update, kids are going crazy. We have had quite the great last few days.

Ethan's first MLB game...he loved it. Lots of photos to come soon.

Two new ear tubes

A dose of IVIG

A spinal tap and a bone marrow aspriation

With the greatest news of all...NO BLASTS! We are still 100 percent cancer free! WOOHOO!

Go love those babies...I'm going to try to wrangle mine into bed..
~Shannon and the gang

Monday, September 3, 2007 10:49 AM CDT

We are enjoying our three day weekend. Missing the babies since they are still at Mamaw and Papaw's due to the surgery tomorrow. We have plans to go to the Texas Ranger game tonight...I believe this is Ethan's very first MLB game. Hopefully he will get hooked like his Mamma!

Ethan had a blast hunting with his Daddy, Grandpa and Papaw. Not many dove to be found, but they were able to get a few shots off. Sounds like there was much comedy about the shooting skills. I would have loved to have been there, but that involved getting up entirely too early for me. All in all, there were two doves shot and Ethan was so excited. He told me it would have been fun if they didn't get anything...glad to hear it, because that has happened a few times. Here are a couple pictures I forced my husband to get...and don't worry...there was lots of purell going on :)

Go love those babies~
Shannon and the gang

Friday, August 31, 2007 9:35 PM CDT

We are hanging in there. We know we must do things to make life better for Ethan, I am just tired of telling him that "this" will fix the problem when it seems like it never does.

The boys are getting up early in the morning to go hunting. Dove season starts in the morning and even though we haven't gotten a bird in the last 3 years, they will be up and ready to try. This will be Ethan's first year to get to go. It is his "observation" year...next year he "might" be able to carry a gun.

This has always been my favorite time of year. My daddy is a hunter and I loved to go with him. There is a passion that true hunters have for the outdoors. My daddy, uncle, Granddaddy and Grandpa all have taught me about it, and now it is Johnny's turn to share it with Ethan. I have spent many of cold morning in a stand waiting for that perfect shot with Daddy...great memories. When I drive around on opening weekend and see all the men/boys in their full camo get-up it brings those great memories back to me. So I just love it. (Doesn't help that it means a cooler Fall is right around the corner, either :)

I believe things are all set out and ready to go...they just have to manage to get out the door before 5 am...FUN!

Go love those babies...
~Shannon and the gang

Oh, and Val, this will be the FOURTH set of tubes since September 2006...bleh!

Friday, August 31, 2007 7:52 AM CDT

Yesterday was not a very good day. Ethan went to school and seemed to be feeling fine. About 1:00 I got a call that I needed to come get him. Unfortunately the woman who called didn�t know his situation, just informed me the nurse wanted me to come get him. She had no information, that was all she knew...let me tell you. It FREAKED me out. I drove very fast to the school to find my baby almost asleep in the nurses office. His tummy was really hurting and he felt very weak. I got him home and he just felt yucky...this is when it began...yep, his tummy problems are back in full swing.

We were able to get to the ENT by 3:15, only to wait until 4:30 to be seen. We finally left his office at 5:10, but not until we found out his right ear tube is clogged, thus not working, and must be replaced. Ethan is scheduled for surgery on Tuesday. I think the only great thing of it all is that Ethan can have his LP and bone marrow while under sedation for his ear tube replacement. This means he won�t have to do it awake on Thursday.

I have already filled Dr. Bowman in on all this information, he is going to call me to discuss our plan of action...

Go love your babies.
~Shannon and the gang

Wednesday, August 29, 2007 7:56 AM CDT

Ethan is off to school on the bus this morning. He was so excited to get going and couldn't wait to get to school. How long do you think that will last? I bet he will be dragging by the end of the week.

Today is a busy day. We are headed to Lewisville to see Dr. Bowman and I have to get the little kids off to Mamaw so she can babysit for me...AGAIN. That woman is a lifesaver, don't know what we would do without her.

Go love those babies...I'm gonna go get my ready.
~Shannon and the gang

Tuesday, August 28, 2007 8:44 AM CDT

Third Grade.

I have been looking forward to this day for a long time. Actually since January 27, 2005. You see, when they told me Ethan would be doing chemotherapy for 3 years 2 months, all I could do was look at my little kindergartener and think�MAN, he will be in third grade when he is done with all this. I couldn�t possibly imagine my sweet little five year old being a big eight year old, third grader, but I knew that day would eventually come and it would be bittersweet. So here we are, starting the school year I have been looking forward to for nearly three years�how do I feel?

Terrified and excited all in one!

I know Ethan doesn�t see the excitement the same way I do, but he still makes little comments that show me he gets it. He told me the other day that he can�t wait to get his last chemotherapy shot. He said that would be the best day of his life, then changed his mind and said, �Actually, the day after my last shot will be the best day. I can�t really say the day I get a shot is the best!� Too sweet.

Our lives have been holding steady in the patterns of chemotherapy protocols for quite some time. We are all anxiously awaiting the day when we get back to a new normal. I know things will never be the same, they will never be like they were before, but I am looking forward to a time when our lives don�t rotate around doctor�s appointments and chemotherapy.

I�m off to get breakfast for the other two monkeys�go love those babies.
~Shannon and the gang

Monday, August 27, 2007 8:36 PM CDT

We met the teacher tonight and Ethan was so excited to find out that his teacher is Mrs. Perrone. She is the mother of a classmate from last year. He always liked Brooklyn and just "knows" his teacher is going to be funny like her. Rumor has it, she is "the" teacher to get, but from our experience with teachers so far..I doubt Pecan Creek has any bad teachers. We have really lucked out with teachers and I have a great feeling we are in for a terrific year.

He is really excited and can't wait till tomorrow. I too am excited, but a little emotional about knowing this is the last year only one of my children will be in school. Next year I will be taking both of my boys on the first day.

I am off to continue getting things ready...go love those babies...
~Shannon and the gang

Saturday, August 25, 2007 8:46 AM CDT

Life is still flying by in the Ford house. I miss my kids terribly, but will get them back tomorrow from their Mamaw. Johnny and I have enjoyed our time as "kidless" parents for the last few days. Trips to the store, movies on a whim, even going out to dinner...all without having to remember diapers or things to entertain little people.

We haven't even ran out of things to talk about yet...of course, we do talk about the kids constantly. Last night at dinner we saw a picture of a bull rider and I asked Johnny if he could imagine Wyatt ever doing that. Without hesitation..."Yes!" Sadly, but truthfully, I feel the same way. It is funny how when you know what your kids loves and will support him in anyway to make that dream come true...even if it is something that terrifies you!

Thanks for swinging by to check on us...no interesting news on the medical front...JUST THE WAY WE LIKE IT!

Go love those babies...
~Shannon and the gang

Thursday, August 23, 2007 9:14 PM CDT

Missing my babies, but getting a lot done.

Went and took some picture of the Montgomery kiddo's today...ADORABLE. The kids and the pictures. I haven't gotten them quite edited yet, but I will show you some of my favorites when I do. We met the Montgomery's on one of the worst days of their lives...their son had just been diagnosed with ALL. We were neighbors not only in the hospital, but also near each other at home. Melissa and I have become quick friends and have some pretty great conversations. I feel honored that she lets me take pictures of her kids, it gives me practice and lets me do what I love!
*edited*
Melissa, I have edited these on my laptop, so if the color/contrast is off...I can fix it...sorry, but I just wanted to show you some of the adorable ones...

Then I was also able to have lunch with Natalie from the Leukemia and Lymphoma Society. Now, that is a great gal. She is a blast to hang out with and even though we only met about 4 months ago, I know we are going to be lifelong friends. May in the next few years she will have a baby and I can go crazy making things for her/him...oh, and babysitting.

So really, I have been busy, but not done much. We did talk to Mamaw today, and the kids are doing great. Ethan had a bloody nose, but all in all, feeling great. (funny how a bloody nose is so not a big deal anymore :) I know what his platelets are and know he is fine.

Johnny and I are staying up late and going to the movies tonight. A 10:15 showing, don't think we have done that since we were dating...of course, I did get to sleep in this morning without any little ones around to wake me up.

Thanks for checking in on us...go love those babies...
~Shannon and the gang

Wednesday, August 22, 2007 3:24 PM CDT

Clinic went great, counts are right where we want them...the perfect last visit before school starts.

Ethan is really ready to get the year started. Monday night is meet the teacher night and he can't wait.He tells me that they get their own "desk" this year, not sharing a table. It's the little things, you know!

He is headed off to his Mamaw & Papaw's to get in some "cousin-time" for the last week of vacation. One happy boy and one lucky Momma.

Go love those babies,
~Shannon and the gang

A few fun photos for you...

I need to take some picture of Wyatt. I haven't gotten any good ones lately.

Tuesday, August 21, 2007 12:28 AM CDT

My husband called me and told me I haven't updated in a while, so here I am. I don't know if there is much to update. Our lives are sailing quickly through the last few days of summer break. Ethan is getting really excited about school, but is so SCARED that 3rd grade is going to be HARD. I know he will do fine.

He is going to be missing quite a few days during the first few weeks of school. Thank goodness we go to the Lewisville clinic now, so I can just pick him up and head down to them after school unless we have an appointment with Dr. Bowman, but then it only means being a little late. He will be going to clinic Wednesday of next week, then going to Ft. Worth to see the ENT on Thursday afternoon. The following week is week 120.

What does this mean? WELL...it means only 26 MORE WEEKS!!!!

He will be going to the Ft. Worth clinic on Sept. 6th for a diagnostic spinal and bone marrow aspirate. It has been a year since we have had a bone marrow aspirate. These are the next to last of these procedures he will have done. Just one more time on week 146! To say I am not nervous about them would be a lie. I think I know in my heart the results will be perfect, but we always live in fear that they might not be.

I am off to do some crafting and relax while Abagail sleeps. I will update sooner next time, I hope...go love those babies...
~Shannon and the gang

Friday, August 17, 2007 3:35 PM CDT

Yesterday was a GREAT day. Ethan and I headed to the Leukemia and Lymphoma Society�s Light the Night kickoff for the Dallas and Frisco walk. As many of you already know, we are doing the Frisco walk this year. We are so excited and so incredibly honored to have Ethan representing all of North Texas as the Honored Hero. Because of that, I have been asked to speak a couple of times. Yesterday I was really nervous...probably because there were SO many people there. WOW...but what a great bunch of people. Ethan has really gotten to know all of the great people who work for LLS and yesterday, that boy came out of his shell. Here are some pictures from yesterday.

This is the copy of my speech. I felt like I rambled, but Natalie said I did great. I hope it inspired people to get out there and raise money. I hope it inspires you to give money. Please, help us...just click HERE to donate. Any donation counts...$5, $25, $50...or $1000...what ever you can give helps.

As Natalie just said, yes, I am Shannon Ford, but as of late I have been know more as the Incredible Mr. E�s mom. Yes, he has created this nickname for himself and it has stuck like glue. We are here today to as for your help, you see, the Incredible Mr. E has a mission. He informed me of this a few years ago. He wants to put cancer out of business for good. If we could find that cure, then we could do just that and no one would have to endure the procedures he has over the last two and a half years.

The only way we are going to be able to find that cure is to fund-raise. You see, it only takes $500 to help a family like ours, but it takes MILLIONS to get a new drug approved and off the shelf*. You know, people think being a cancer mom is tough. I won�t lie to you, IT IS! The pain is even more than you can imagine, but the part I hate the most is knowing that my sweet little boy knows what protocols, prognosis� and death are all about. Don�t get me wrong, he is a typical little boy who loves Pokemon and Transformers, but he is far from normal. As much as I want that normal for him, I want a CURE even more.

That is why we are here today. We need you. Please, raise those funds. I want to personally invite you to come walk with us if you don�t have team. Ethan needs our support as he races to the finish line. You see, he only has SEVEN more months of chemotherapy.

*Just recently a drug,Gleevec, was approved for the treatment of CML. People used to have to go through a bone marrow transplant to save them from this form of leukemia, now they just take a little pill everyday for the rest of their lives. A pill that the LLS helped to fund and get on the shelves for the patients.

Go love those babies,
~Shannon and the gang

Tuesday, August 14, 2007 8:35 PM CDT

The kids are being oddly good. I have enjoyed the last few days of them trying to impress me with their behavior. I will cherish it, because I know it will end all too soon...most likely without any warning.

We are cruising along with the antibiotic that Dr. Shelton has Ethan on. His body tends to break out in a horrible rash every night shortly after taking his medicine, but with loads of benedryl we are able to get it under control. We only have 15 more days of it...FUN, FUN!

Dr. Day was awesome on Monday at Abagail's 2 year visit and looked at Ethan's ear. He said he has some dried blood and goo (yes, that was his word) around the tube. This must be removed from his ear by the ENT, and we will go see him next week.

As far as Abagail's visit...she is perfect! But we all knew that already! Wyatt and Ethan were amazingly good during the visit...I was feeling like the luckiest lady in the world there. Two handsome boys, a beautiful girl...don't need much else.

Off to get ready for tomorrow. We are headed to Lewisville for his weekly chemotherapy shot, then over to deliver a birthday gift to my niece who is turning 10. Can't believe she is going to be ten, just yesterday I was newly engaged to Johnny, my sister was very pregnant with her first baby...my life was just starting...WOW...

Go love those babies,
~Shannon and the gang

Sunday, August 12, 2007 9:57 PM CDT

Doing our best to get through the weekend. Yesterday was sweet Abagail's 2nd birthday. I can't believe she is 2! Today was spent going out and buying her new shoes.

Ethan seems to be doing okay. His right ear has to bother him...that does not make me happy! He will be going to see the ENT sometime next week, which reminds me...I need to make that appointment.

Thanks again for checking in on us...go love those babies.
~Shannon and the gang

Friday, August 10, 2007 9:37 AM CDT

Wow, re-adjusting to being home is hard. The kids didn't sleep at all last night. I probably slept better in the hospital if that tells you anything.

Ethan started his new medication last night and had some pretty intense side effects. At first we were frustrated with him. We've been in the hospital for 11 days, and we come home and his legs hurt, he is vomiting, his tummy hurts...etc. Then for some reason I grabbed the sheet from the pharmacy and it said to call immediately if you have sudden leg pain, vomiting, severe tummy pain...yep, we won the trophy for parents of the year. We know it isn't his fault, but man...this just gets old, and I think the fears of having to split the family back up and go to the hospital again just set us off.

I called the oncologist on call, Dr. Eams, and she basically said, the effects will discontinue soon and to not give him anymore (really, I would have never thought about that). He is feeling 100 percent better today. She is going to talk to Dr. Shelton today to see what his plan is.

Fun, Fun...never a dull moment with our boy.

Not much planned for today, other than a haircut for Miss Abagail. Not sure what to do with that crazy, curly hair, but need to do something....

Go love those babies.
~Shannon and the gang

Thursday, August 9, 2007 4:04 PM CDT

WE ARE HOME!!!!!!!!!!!

The doctors woke us up this morning with the great news that we were going home. I still have lots of errands to run, but at least we are back at home. Ethan seems to be feeling good and re-adjusting to the "not everyone is my servant" lifestyle. We will get the babies back from Mamaw this afternoon and I can't wait.

I left the hospital with a very heavy heart. A dear friend of ours had been struggling through his last hours most of the day. I know he will be passing sometime today, if he already hasn't. Please pray for strength for his family, their pain is unimaginable. I cried the entire way home, I kept thinking about how lucky I was to be taking my son home. Sometime today, they will get in their car to return home and a seat will be empty. That seat shouldn't be empty. I HATE CANCER! (Obviously, I could use some prayers for strength, too)

Thank you for checking in on us. We have felt the rally of those who have lifted us up...Go love those babies.
~Shannon and the gang

Wednesday, August 8, 2007 5:57 PM CDT

Okay...now I have no idea where to start. They say that kids can make a liar out of anyone, and I guess I will add Doctors to that category too. Yes, we had a positive culture on Tuesday, but Wednesday's was negative...SO...things are up in the air about what to do. Dr. Heym and Dr. Shelton told me minimum 7 days with vancomycin, BUT Dr. Bowman pointed out that we have been on the vancomycin for seven days already and that should have wiped out anything. He feels like we could go home TOMORROW if there are no fevers or other oddities that come up in the next few hours.

Since all of Ethan's scans have come back with no signs, they are confident they ruled out a fungal infection. They feel like those fevers were just a body reaction to boost counts or they were busy working on that slight pnemonia he has. It has even been mentioned that it might have continued for so long due to post surgery gunk. Who knows. I think our saving grace in all of this is that we have been intending on going home with a really high powered antibiotic for 3-4 weeks anyways to nab that sinusitus. So the doctors feel that should be good enough coverage to handle whatever Ethan decides to throw it's way.

Basically, I am telling you. Ethan feels great, we could go home tomorrow, but I don't want to say we are, because quite frankly, you have already seen how much these guys change their minds.

We are seeing old friends, making new ones, wishing the world of cancer never existed, but glad to know we have these people by our sides when we need them...take time tonight...go love those babies..
~Shannon and the gang

Tuesday, August 7, 2007 1:48 PM CDT

Well...where do I start?

Ethan's scans came back...okay. Yes, we have sinus issues, yes, we have pnemonia in our right lung...these things we already knew. He had a few spots show up on his spleen, so we just got back from sonogram so they could get a better look. The doctors believe this is really not an issue...who knows.

His counts took a dip today, probably a sign that all those white blood cells are off attacking something. They are doing what they are supposed to...at least that is what Dr. Heym says. In 10 minutes, he will be 24 hours fever free. He will be bolting to the playroom, ready to attack Stacey's Xbox...

The bad news is that his blood cultures from yesterday have started to grow something. As of the time the doctors came in, it was a gram positive something. We will have more details at time goes on. We cannot be sure if this is a contaminated culture or not, but nonetheless, we will be here for 7 days minimum. I was even told up to 2 more weeks. Needless to say, I told that doctor to leave and I didn't want to talk to him right now.

I will be interested to see if his culture from this morning grows anything. Even if not, and it is probably just an error, they cannot send us home until we complete the required treatment for gram positive cultures. They are nasty and we don't want to risk it.

When Ethan heads to the playroom, I am going to head to the yarn store. I have to find something to do...I brought some knitting for Abagail, but it is entirely too challenging and I can't seem to concentrate like I need to.

Thanks for all your kind words...this will have been a really LONG stay by the time we get to go home. Juggling the babies, John's work and all the other various things that are happening in our lives right now have been challenging...but a little note from ya'll makes it a little more bearable....
Go love those babies,
Shannon and the gang.

Monday, August 6, 2007 5:44 PM CDT

Our counts definately took a turn and are on an upward swing but last night was filled with more fevers. Not wanting to take any chances on missing anything, the doctors ordered CT scans for today. We went NPO late this morning, spiked some fevers, drank some contrast and finally after 3 headed down for scans.

We are waiting patiently for results while ingesting bag after bag of Funyuns (man, those things STINK)!

They have changed the "family" of antibiotics and added an anti-fungal one to the regimine since the previous ones weren't doing anything.

The doctors list of what is going on is:

1. Infection
2. Infection
3. Infection

The big questions we are hoping to answer with the scans are:

1. Where?
2. What kind?
3. How to treat?

I am hoping for some answers with all of this, not sure how much longer I can be cheery Mrs. Ford. Starting to go really stir crazy and so is Ethan. Yesterday we sat here for a full 15 minutes, no TV, just staring at each other out of boredom. Today, we made some gak (nasty, fart making slime) and are watching more movies...oh the fun.

I'll update if I hear anything...lets just hope that is soon.

Go love those babies.
~Shannon and the gang.

Sunday, August 5, 2007 2:44 PM CDT

I was thinking earlier...how do you know when you have been in the hospital too long?

Well...here are some examples:

You start re-arranging the furniture in the room because you are bored with it.

The thought of climbing into the bed with your child to cherish the 6 inches of space they are giving you is a far better choice than sleeping on that 6" foam mattress they tell you is a bed.

You actually get the egg salad in the cafe for lunch, because, basically, you have had everything else.

The child life lady has not only taken her family vacation, but she is back.

Nurse are now on their 5th 12 hour shift since you came in.

You start going to other areas of the hopsital to get your coffee...they make it too strong on the south...the fact you even know this is pathetic.

anywho...back to my journal and the reason you came.
So much going on, yet so little change for us. Ethan is continuing to spike fevers. About 10 minutes ago, his fever spiked to 40.6 celcius. I don't know the conversion, but this is high. More tylenol and waiting for us.

His counts did take a rise today, nothing dramatic, but finally an up turn. We are hoping to see even better improvements tomorrow and as the counts rise hopefully the fevers will stop. At least that is the hopes of the doctors. If the fevers continue after the counts go up, we will being to do more tests to discover the cause. Right now, I have not let my mind wander too far on what the other causes could be. I know my mind wants to go places I am not ready to go...not unless those darn doctors tell me to.

So lots of movies, more grey walls but getting those extra sweet cuddles in his bed make it all worth while.

Thank you for continuing to check in on us...
~Shannon

Saturday, August 4, 2007 4:27 PM CDT

Not much of anything new going on. Ethan is still spiking fevers and the radiology report shows signs of sinutitus as well as some minor fluid buildup in his right lung. His white count rose to 1300, but his ANC fell to 20. Yes, 20, I did not forget a zero.

I was basically told we are just waiting to see what his counts will do over the next few days...that is the doctors way of saying...get comfy! BLEH!

Daddy came for a visit today. Did Ethan's spirits some good, I am afraid to see what is going to happen when he leaves. Might have to find a really good movie or something to recover from that. Really wish we could get into that teen room for some Wii time. That boy is wanting a Nintendo Wii so bad and it is practically torture to have one in the teen room that he can't play with. I guess he couldn't go in there anyways, with these fevers and all...oh well.

More days of staring at grey walls. Loads of fun. We are right where we need to be, even if we don't want to.

Go love those babies,
Shannon and the gang

Friday, August 3, 2007 6:42 PM CDT

Today has been rather uneventful, which is good. Yesterday we managed to spike several fevers, be rather lethargic and have a mild reaction to Vancomiocyn. FUN�

We were visited by infectious disease today and he ordered chest and sinus x-rays. He is trying to determine the best way to approach things if he finds a sinus infection due to the diarrhea. He also heard lots of gunk in Ethan's chest and said that didn't make him feel very comfortable with our counts where they are. Not sure of the game plan, but he did say he would talk to me Monday�that didn't sound good. I had a feeling they weren't planning on releasing us over the weekend, but that pretty much confirmed it. Bleh.

So we are doing our best to keep busy. We had a private lesson on Skip-Bo this afternoon from Ms. Audra. We intend on playing our hearts out this weekend. We will keep up tradition with our angel buddy, Paul, and use his rules.

Thank you for continuing to check in on us. Say your prayers for us, but please, don't forget all the others out there involved in the battle against cancer. Too many new friends made this week�

Go love those babies,

~Shannon and the gang.

Wednesday, August 1, 2007 1:48 PM CDT

Dr. Bowman stopped by and quite frankly told me that we are looking at least another two or three days. His counts show no signs of improvement right now and we are doing our best to stay cautious with everything and keep any infections away. They did culture his ears when they removed the fluid and some strep-a-something is growing, so we are going to have infectious disease to come in and make sure we aren�t missing anything. His line culture from Tuesday were clean, which is good and considering we haven�t had any more fevers�he still feels like it still good. We will probably start him on a course of vancomyicin (I think that is how they spell it) just for precaution, but that is not until Dr. Bowman has a pow-wow with our infectious disease doctor.

Fun�FUN�FUN�

The nurses are spoiling us. I have a beautiful picture of the beach on our wall�just watch out for sharks and they have drawn a picture of a wine bottle on my water cup. Just like a vacation�

Go love those babies�
~Shannon and the gang

Wednesday, August 1, 2007 8:48 AM CDT

I was sitting here with my feet up, flip flip flops on, tank top and reading a book: almost like a vacation. All I need now is the sounds of the waves hitting the shore and it would be! (This is me trying desperately not to go crazy!)

We are not going anywhere today. Thankfully, the fevers have stayed away, but our counts dropped dramatically since yesterday. I was told this morning until we see an upward trend...this is where we will be. The good thing out of all that, is we can only go down 160 more in our ANC before we have to make an uptrend...yes, again, trying to be positive!

I'm off to dig for more movies. The bad thing about the fevers going away is that now I have to be the mean mommy and not let him go to the playroom if it has people in it. Our counts are way to low to be playing with school kids visiting and such.

We are hanging in there, thanks for your thoughts and prayers...go love those babies.
~Shannon and the gang

Tuesday, July 31, 2007 2:10 PM CDT

We are finally out of surgery and back into our room. The day didn't start out rather well and we have spiked some pretty high fevers. His temperature is still not normal, so we will see. His blood counts also dropped again today, so I cannot even begin to guess when we might go home.

The ENT said the tubes have been replaced. The left tube actually fell into his ear drum, not out. That would explain alot of the pain he was in. His right ear was full of gunk, the tube seemed fine, but he decided to replace it anyways so we can start again with a new set.

He did feel like Ethan should be better today, not worse. He wondered outloud if it might be an infection in his port or something else causing the fevers. Who knows. They drew a culture at 11 am this morning when his fever rose above 103, so we will know in 24 hours or so...

He is rather grouchy from surgery, but refusing to take a nap. I am trying to console him with Superman Returns, but it doesn't seem to be working. I know he will feel better with some food in his belly and being able to remove those darn cotton balls from his ears.

I will update again when I get a chance.
Go love those babies...
Shannon and the gang

Monday, July 30, 2007 8:55 PM CDT

I sit here writing to you from the "Big House" or "Camp Cooks" which ever you choose. The day started out with a temperature of 101...bleh. From there, things got worse. We made it to 101.8 before finally making it to the clinic in Fort Worth. In typical fashion, Ethan had NO temp by the time we were seen at clinic.

We were told they would just give us a high powered IV antibiotic and send us on our way. Those ears were EXTRA nasty but this antibitic should hold him over and give him some great protection until surgery tomorrow monring...That was until he spiked that fever. Then Dr. Heym wanted to wait for our counts to come back and BLEH...we are talking ANC 312. Hello infection, wanna play?

From there the gameplan changed dramatically. We were being sent to the hospital for that typical 24 hours or more stay and surgery...well, that was debatable. Not sure what the official plan is for now, but I have been told that they are planning on the surgery tomorrow morning because it isn't that invasive and the risk of leaving the infection is far greater.

So, I am really nervous. Feel like I am sending my son to the germy wolves. Not coping really well with all the decisions, hoping I am making the right ones. Looking for lots of support from God as I make my way past the huge fears I have.

I am off to snuggle with my baby...lots of movies to watch. (We found our favorite, Muppets from Space, so if you hear loud laughing...it's just us!)

Go love those babies,
Shannon and the gang

Sunday, July 29, 2007 2:49 PM CDT

We made it through the rest of the week. Exhausted, but we made it. Ethan did AWESOME at the clinic, his counts were a little down, but nothing to keep us locked up in the house.

The ribbon cutting was a wonderful success. It was mostly publicity for the Leukemia and Lymphoma Society, but we were so proud to be a part of it. Ethan got to meet the mayor of Frisco (that really impressed him) and even got his phone number. Too cute. He walked around showing everyone that HE got his card and could call him if he wanted. Both Wyatt and Ethan behaved wonderfully and impressed all of the different people who were there representing some of the larger businesses of Frisco. The story should print in the Frisco portion of the Dallas Morning News and I will be sure to scan a copy for you all to see when I get it.

Natalie (the wonderful gal in charge of the LLS Light the Night walk in Frisco) said the response was incredible. It is amazing how much it affects people when they actually are able to put a face to a disease. She gave a quick blurb about Ethan and how he has done over 2-1/2 years of chemotherapy and only has 8 more months left. The room went CRAZY! Ethan turned bright red...I cried. It was a great moment.

Ethan's ears have been bothering him something terrible. He has also been running a low grade fever all weekend. Poor little guy. He just can't wait until Tuesday to get his ears fixed. Hopefully they will continue with the surgery. His cough sounds gross, no wheezing, so that is good, but still a cough.

I am off to see if Daddy will take us for ice cream...that always makes everyone feel better...

Go love those babies,
~Shannon and the gang

Tuesday, July 24, 2007 9:36 PM CDT

Life is busy, Life is good.

We are still taking things day by day and trying our best to enjoy life. Ethan seems to be feeling okay...BORED with summer...but okay. Tomorrow we head to the Lewisville Clinic for a quick dose of chemotherapy and a few hugs from Ethan's favorite ladies. Lots more on the books for the week.

Tomorrow night there is an information meeting at the Lewisville Clinic for our Light the Night walk. If you want more information, please let me know. We would love to see you.

Then on Thursday morning, Ethan will be cutting the ribbon at a ceremony for the walk. This is the first time the walk will be held at this location and they are having a big hoopla with the mayor and press. Ethan is so excited, he is becoming quite the little spokesperson...so adorable.

So, like I said before, life is busy and life is good. We are happy, living our lives one day at a time.

Go love those babies...
~Shannon and the gang

Monday, July 23, 2007 10:50 AM CDT

We had a great weekend. Daddy took off on Friday for a special memorial event for our friend, Ian. This is the third year they have had it, but the first time Ethan was healthy enough to participate. The boys each got to fish with professional fishermen

...on their boats...

without PARENTS!

They thought it was the greatest. Ethan caught 18 fish and Wyatt caught about 6. As you can see from the picture below, Wyatt was all over catching "Wyatt-sized" fish. He loved it and had a blast...best of all, they used their manners. WOOHOO...love it when your kids behave.

Mommy, Daddy and Abagail went for a ride on a Game Warden boat while the kids were fishing, and even though it doesn't look like it, Abagail loved it. Mommy got some game warden buttons and she loves them, although, she should share with her kids, she is hoarding them for herself :)

Ethan's ear is still bothering him but the surgery is only 8 days away now. His cough is still acting up, but hopefully not enough to keep him out of surgery. His tummy issues returned while he was at camp and we have completed another dose of the Alinia and are waiting patiently for it to kick in.

All in all, life is good. We have each other and we are trying our best to enjoy each day.

Go love those babies...
Shannon and the gang

Wednesday, July 18, 2007 4:27 PM CDT

We saw Dr. Bowman today and the checkup went great. Ethan seemed to really be in a good mood and that really helped with matters. Basically we are to keep on the same track we are on and continue to wade through the next 33 weeks the best we can, taking them one day at a time. Did you catch that?

33 WEEKS

Yep...I can't believe it. I can't believe how fast time is running down. I know it will go by fast and slow at the same time...don't know which I prefer.

I am off to make dinner...enchiladas...YUMM-O.
Go love those babies,
~Shannon and the gang.

Saturday, July 14, 2007 7:43 PM CDT

It has been such a long time since I updated...I don't even know where to start. On Wednesday we attended a very special corporate luncheon for the Leukemia and Lymphoma Society. Since Ethan is the honored hero for all of the North Texas Light the Night walks this year, they asked me to give a speech. Ethan was shocked at the way people were treating him. I think we have tried so hard to make his life normal, he is wondering what all the hoopla is about. He said he loved my speech but it was embarassing to hear me talk about him like that. He like the other speaker's speech better...she was funnier (and she was :) Here are some photos from the day.

After the lunch, we headed straight to the Lewisville clinic for a 3 hour infusion of IVIG followed by his weekly dose of chemotherapy. His counts are running a little high, but I assume it is from the ear infection that doesn't seem to want to go away. On Monday we will be meeting with the ENT and scheduling another tube placement surgery. I am just afraid the cough he has is going to keep us out of the OR, I can't imagine any doctor would put him under with a cough like that...so I am anxious to see what we are up against on Monday.

Friday we went to visit with the orthopedic doctor for Ethan's AVN. It was a really long appointment with lots of waiting, but Ethan hung in there and was such a champ for Dr. Gray. His bones were checked out and he said they look great, with the one thought that they were the bones of a little boy who had recently been very sick. You could actually see the "rings" as he grew over the last few years. He said that everytime Ethan's counts dropped or he recieved a high dose of chemotherapy it would change the bone structure a tad bit. There isn't a problem, they are still normal bones, but they just show the struggles he has had. I hope I explained that okay, but if not...just know we don't go back for a YEAR! WOOHOO!

I am still going to share the story of our trip to the Lighthouse Family Retreat with you, but I am still trying to find the way to best describe it...Go love those babies...
~Shannon and the gang.

Monday, July 9, 2007 4:49 PM CDT

Ethan has no fever today. He doesn't feel any worse, but no better either. I am hoping he will start feeling better soon. We have plans for chemotherapy and IVIG on Wednesday if things stay the same.

Go love those babies..
~Shannon and the gang

Sunday, July 8, 2007 11:08 AM CDT

Ethan's fever never made it past the magic 101, but he stayed about 99.9 to 100.3 all day. It seemed to be almost gone by late evening, but he woke up with it again today. This morning it is higher...staying above 100, but below 101. We will see what happens. So once again, we are on fever watch today.
~Shannon and the gang

Saturday, July 7, 2007 10:48 AM CDT

Ethan had a wonderful week at camp. I picked him up at the hospital yesterday and since I was running late, the lovely Graham's had him all gathered up with his luggage ready for me! What a great bunch...their daughter, Shelbie, also has ALL and they go to the Lewisville clinic with us. According to Ethan, that is one of the greatest things about the Lewisville clinic...RYAN, Shelbie's little brother!!!

Anyways...back to what I was saying. Ethan had a blast. His project was fishing and he came home telling tales of largemouth bass and catfish the size of his brother. I can't wait to see the video and the pictures, but I know that will be some time from now. For now, I will have to settle for the huge smiles as he tells his stories. (I think I can live with that!)

This post is not all full of good news. We headed straight to the clinic after getting off the bus to see Dr. Bowman. His counts were great, but his left ear is infected...AGAIN. Dr. Bowman said there was no way we were going to get away from having to replace that tube. Our appointment with the ENT is July 16 and I anticipate surgery shortly after that. Dr. Vories is always quick to want to fix things...can't complain about that.

This morning Ethan is running a fever. It has been shifting from 99.4 to 100.3! If we hit the magic 101 I will be calling the hospital. Please pray we don't hit that number, but if we do, that they will let him slide because of his ANC. I highly doubt that, but I can hope, RIGHT?

Not many plans for the weekend, Daddy is on call. I am off to finish up some laundry and think about what to make for lunch...fever watch here I come.

Go love those babies..
~Shannon and the gang.

Tuesday, July 3, 2007 10:35 PM CDT

Ethan left for camp on Sunday. Once again, he got on the bus hoping we would leave quickly. I did however smother him with kisses before he reallized that people might be looking. We will pick him up on Friday, and I can't wait. Boy, I miss him when he is gone.

Tomorrow we are headed to Mamaw and Papaw's for some yummy food and fireworks. Wyatt got to pick out his pyromaniac bucket at the firework stand this evening and can't wait till tomorrow. We are going to get up and make the traditional American flag cake with blueberries and strawberries before we head out, and that is just another thing Wyatt can't wait for. (Of course, he eats more fruit than he decorates with, but can I really complain about that?)

I'm off to get some rest, life will be crazy for the next few days. Hopefully I will be able to get some pictures to share.

Go love those babies...
~Shannon and the gang

Friday, June 29, 2007 8:02 PM CDT

Just playing with pictures...I haven't gotten all the ones I want to share from the Lighthouse yet, so I will try to please you with these :)

Love this picture of Wyatt, we were playing in the yard and I wanted to try out this fun camera trick. Let's just not talk about how I felt afterwards :)

Here is a cheesy picture of Ethan from the Lighthouse. He caught a lizard on the beach and was so proud of himself. Unfortunately, he wouldn't look at the camera, so this is the best I could get!

Now for some fun ones of Abagail playing in the yard. Man, her curls are to die for and she is just adorable. Of course, this is a biased opinion...although, I know you agree!

Friday, June 29, 2007 5:18 PM CDT

We made it to the clinic today, with the help of Grandpa, who watched the little ones while we did our clinic thing. Dr. Bowman said Ethan looked fine to go to camp and I am doing my best to get him packed. His counts were okay, but most likely being masked by the steroids he has been on for the cough.

We will not give him his methotrexate at camp next week and will have another clinic appointment after he gets off the bus. If his counts are okay, then he will have his weekly, chemotherapy. He will continue to take his nightly 6mp, so at least I still have a lightweight chemotherapy blanket to feel content under.

After clinic we headed to the Purple Cow for lunch. The kids love their purple ice cream (it's actually vanilla, but it PURPLE)! The food was good and the kids actually behaved!!!

We are off to run some errands and there is rumors about purchasing a potty for our little miss. I know potty training is a LONG process, but the thought of NO diapers after 8-1/2 years is so EXCITING! We aren't sure if she is ready, but considering she sheds a diaper as soon as she soils it...I am hoping.

Wish us luck and go love those babies...
~Shannon and the gang

Wednesday, June 27, 2007 1:09 PM CDT

Ethan was able to sit still through his entire MRI yesterday without sedation. I am so proud of him for his bravery as they place him inside those huge machines. We aren't sure when we will get the results, but this was basically just a check up MRI to verify that he doesn't have anymore AVN than he did 6 months ago. From what I understand, the AVN should be able to repair itself and his joints will eventually return to normal. (That is after he is done with the chemotherapy.)

Our clinic visit for today was cancelled and they want us to go to Ft. Worth on Friday. They will then determine if he is healthy enough to attend camp or not. John and I are on the fence about sending him since we know this is his last year at camp. Next year we will have to find another camp for him to attend, I don't know how the boy will cope without a summer camp to attend.

His cough is trying to get better, but when he does anything it flares back up. We are spending most of the week trying to keep dry. I can't believe all the rain we keep getting. I just wish I could send it out to Tahoe so they could put out the fires.

Go love those babies...I'm going to do laundry!
~Shannon and the gang

Sunday, June 24, 2007 8:56 PM CDT

We got back from our trip to the Lighthouse Family Retreat about 1 am this morning and I promise to eventually get that post together with pictures and stories...just not tonight.

We started the day at Care Now with Wyatt and his double ear infections. Poor guy, he was just miserable. Ethan started feeling horrible too and by 2 pm I was on my way to the ER at Cooks with him. After 4 hours, a chest x-ray, blood cultures, breathing treatments, and some antibiotics, we were on our way home. Thank goodness for a good ANC! WOOHOO! I just knew we were in for an inpatient stay.

I have an email off to Dr. Bowman about where to go from here. I am hoping Ethan can kick this thing soon, he is supposed to leave to Camp Sanquinity next Sunday and I sure would be sad if he missed out on that. I can't imagine what it would do to him if I told him he couldn't go.

Yesterday, Elesha earned her angel wings. I was unable to make her service because I was in the ER with Ethan, for that I am devastated. Elesha will be a light that will shine through me the rest of my days. Her beauty inside and out will forever be memories I will cherish. The amount of people that Elesha touched is probably un-countable. I personally am honored to have been one of those people.

Go love those babies...
~Shannon and the gang.

Friday, June 15, 2007 12:39 AM CDT

Well, it's Friday and ya'll are probably waiting on an update. Life has been crazy busy with lots of doctor appointments and driving. Wednesday we went to clinic and got IVIG and chemotherapy. Things were well, with the exception of a painful ear and a case of thrush we just can't kick! Thursday consisted of an "attempted" visit to the dentist to fix our bottom teeth, but no luck...can't touch those teeth with all that thrush going on.

So after killing some time at William Sonoma browsing we headed to see the GI doctor, who told us that she felt like he look great! Huh? Yeah, I was confused, too! She told me that he is in the 50th percentile and that is great. She felt like there was no need for anything further. My personal opinion (which I know is why you all come here) is that she is just offended that we went to infectious disease and he fixed Ethan's problem. Speaking of Ethan's problem...as of now, I will consider it fixed (knocking on wood). I truely hope his body was just adjusting and we will no longer see loose stools.

The ears...don't want to talk about the ears right now. Please just pray that he doesn't get an infection before the 2nd week in July (when we finally get to see his ENT).

Life is busy, I will have lots to update soon...go love those babies,
~Shannon and gang

Monday, June 11, 2007 10:00 PM CDT

Well, life is still moving along in the Ford house. We are hanging in there and doing the best get through the days. We are getting disappointed because Ethan's stools are starting to loosen up again. We will see how he does tomorrow and maybe get that prescription filled to start him up on the "magic" medicine again.

The kids are in full boredom of the summer and doing their best to not drive me completely crazy! Okay, honestly, I think they sit around all day and come up with things to drive me nuts...crazy kids.

I am off to bed...go love those babies,
~Shannon and the gang

Thursday, June 7, 2007 10:09 PM CDT

Today was quite the day! Our clinic visit was busy to say the least; a day full of mixed emotions. Dr. Bowman discovered that Ethan�s left ear tube has fallen out. This is SO not good, considering he has fluid buildup in his middle ear already. He has two more days of omnicef left and then I�m sure we will have to start something else in order to nab the infection that we are going to have. This worries me...we are probably going to have to replace the tube soon and that is not what I want Ethan to have to do right now. Bleh!

Ethan has also come down with a nasty case of thrush. Most likely from his antibiotics and now we have to start him on ANOTHER medication to clear that up. Boy, oh boy, I wish I had counted how many prescriptions we have dropped off just since the beginning of the year. I am probably going to flip when I see his year end report from the pharmacy. Thank good ness we love Miss Liz at the pharmacy, she takes such good care of us and never makes us wait!

Ethan waited ever so patiently for Dr. Bowman to walk into the room and was thrilled to fill him in with his news. Ethan had a solid stool yesterday (and tonight)! YES, SOLID!!! SWEET!!! I think we might be seeing a turn-around in tummy problems. Dr. Bowman did give me another prescription for the magic medicine just in-case it comes back...but we are praying we NEVER have to fill that prescription.

So we are getting one thing fixed yet we are still dealing with other issues. Poor Ethan, he just can�t win! So, I am off to get ready for bed...go love those babies.
~Shannon and the gang

Tuesday, June 5, 2007 10:10 PM CDT

We have been postponed on our weekly visit to the Lewisville clinic. Dr. Bowman is stuck in Mississippi and won't be back in time tomorrow, so we have rescheduled for Thursday. I know Ethan was not dissapointed that he would get an extra day before his next leg shot.

His tummy issues are still about the same. I am looking forward to talking with Dr. Bowman about our plan of action. I am really getting bogged down by dealing with this and poor Ethan is so tired of it as well.

I am so ready for our trip to the Lighthouse Family Retreat. I am looking forward to spending time with families who understand what we are going through. We have people in our lives who support us, but no one understands our everyday situations like other cancer families. The fears that underly in our every decision are tremendously overwhelming and they get that. There are decisions we make that no one seems to understand and we feel like we have to defend ourselves. It has taken me almost the full two years to feel comfortable in the way we have decided to deal with Ethan's diagnosis and treatment. Our comfort has come from our personal experience with friends who are also undergoing treatment for cancer. Some have been fortunate to complete treatment and thankfully have rejoined the "normal" world again and are having a blast. Others have not been so lucky. Some have relapsed, some have earned their angel wings.

As we get closer to the end of Ethan's treatment I know that people are getting excited. While on one hand I too am excited, on the other hand, I am getting more and more terrified. I also know that when we reach that point, I am going to be a complete mess. Obviously you can tell this is something that I have been fretting over especially since it is still 9-1/2 months away.

My mind is all over the place and I had better get ready for bed. Go love those babies...
~Shannon and the gang

Saturday, June 2, 2007 10:46 PM CDT

Dr. Bowman called this morning to let me know he was feverishly researching information about the medication we have Ethan on and the exact cure for the other little boy. He let me know that he will be getting back with me next week. So far there has been no change in Ethan's issues...so we will see!

He has been on his antibiotics since last Wednesday and he sinuses sound a little clearer. Unfortunately, he has a developed a horrible cough and I am a little concerned about it. Hopefully it will get better soon!

We are busy enjoying the weekend and trying to keep the kids busy! Hopefully I will have some pictures to share soon, the kids have been quite the little hams lately!

Go love those babies...
~Shannon and the gang

Thursday, May 31, 2007 3:21 PM CDT

Well, the good news is that Ethan�s nose is NOT broken!

What?

Your wondering why on Earth this is even an issue...well, let me fill you in!

We were getting ready to head to the Lewisville clinic to see Dr. Bowman yesterday, when all of the sudden we were about to get pounded by some serious thunderstorms. I ran outside to get the doggy to put him in his crate and the door shut behind me. Ethan, being the helper that he is, heard this and turned, running full speed to hold the door, but ran smack into his brothers head. As I ran back into the house I heard his cries and knew something bad had happened. It wasn�t bleeding that bad, which really surprised me, but it sure didn�t look right. He calmed down rather quickly and I decided just to wait and see what Dr. Bowman had to say about it.

When Dr. Bowman saw his nose, he decided he wanted to do an x-ray to see if it was broken. As you already know, the x-ray came back with �no fracture.� Unfortunately, the x-ray did show that Ethan had sinusitis, so we are on a 10 day cycle of Omnicef. I�m sure that is going to do wonders for his tummy issues!

There has been relatively no change in his tummy issues. I have been told to call Dr. Bowman tomorrow morning, and unfortunately, I am afraid I am going to have to report no change. Ugh. We will see what happens, maybe he will want to wait over the weekend for another report on Monday.

So wish us luck for that �magical� change. Go love those babies...
~Shannon and the gang

Monday, May 28, 2007 9:32 PM CDT

I hope all of you had a great weekend. Ours has been 8busy, yet relaxing! We took the kids fishing on Saturday, but we had no luck! Today Daddy took the boys out to the pond and thank goodness they were biting! So today, Wyatt caught not only his very first fish, but his first THREE fish!

Ethan only caught one fish, but it was the biggest, so he could still "brag!" The kids had a blast and can't wait to go back again.

Ethan finished his medicine on Sunday morning and so far we haven't really seen much of a change. I went back and read the clinical trial information again and it stated 4-7 days after completion of medicine was when most people saw a change. Basically this means we are hoping to see a change sometime over the next week!

Not much planned for the week. We will see Dr. Bowman on wednesday, but other than that...not much else on the books. I am hoping I can come up with a bunch to entertain the kids.

I am off to get some rest...go love those babies.
~Shannon and the gang

Friday, May 25, 2007 2:13 PM CDT

I spoke with Dr. Bowman and we decided that Ethan needed to recieve IVIG again. His levels were low once again and he may just require the transfusion once a month for a while and it may even continue after treatment. Hopefully when his marrow resumes normal function again after treatment he will be able to make immunoglobulin on his own, but we won't know that for another year, so for now we will continue to take it week by week.

We also started him on a antiparasitic on the orders of Dr. Shelton. They are concerned that Ethan may have Cryptosporidium , but are not wanting to put him through a scoping/biopsy procedure to prove it. The medicine if fairly new and it only requires 6 pills. One pill 12 hrs apart for 3 days. We are praying this is the miracle drug and we will know shortly if it is. Results from clinical trials have shown 83 percent of the people with Cryptosporidium recover with "normal" stools within 3-5 days of starting the medicine. He did not have a positive culture for it, so basically we are trying the medicine in hopes that it cures our problem and we won't have to scope Ethan.

We spent the morning at the Lewisville clinic getting our IVIG and have already had 2 doses of the new med. Wish us luch for success...

I'm off to get some things done...go love those babies,
~Shannon and the gang

Wednesday, May 23, 2007 8:13 PM CDT

Today was Ethan�s end of year party at school and we were enjoying the afternoon talking about all the fun he had when suddenly I realized something! I forgot it was Wednesday and we needed to head to the Lewisville clinic for chemotherapy. On the weeks we don�t see Dr. Bowman, there is not a set appointment for our chemotherapy, so since I didn�t have a time...I forgot. Thank goodness it was 10 till 4:00 and they said come on down. So off we headed to the Lewisville clinic.

Wyatt was quite the turd in the waiting room and was testing me beyond my limits. I have never been more embarrassed by my son than I was today. Of course, he is only 4 and I KNOW that soon enough he will prove this statement a lie, but as for today...bleh...what a brat. As soon as we got in the car to go home, he was back to his normal self. I think he just gets overly wild at the clinic to insure he gets attention from the nurses and Ethan doesn�t get it all. I could also continue to make excuses, so I will not. So to all of you at the clinic, I am sorry for his behavior. I know am being over-critical of him, but man, he just needs to sit quietly!

So today wasn�t the greatest of visits. Ethan�s weight is still down. His belly was quite distended while we were there, so Ms. Tina was the first medical person to be able to see it and confirm I wasn�t just losing my mind. They talked seriously about his tummy issues and I nearly lost it when she told me he was worried about going to camp since they don�t have doors on the stalls in the bathroom. Poor kid, he really shouldn�t have to worry about those things. I was told to call Dr. Bowman in the morning (remember, I have the number to his bat phone..yep, I a cool mom!) And he has a few things to discuss with me. I always worry when things like that are said. I know things need to be done, but I am afraid to make Ethan go through more procedures. So tomorrow morning I will call Dr. Bowman and hopefully have a plan. I would like to say that I am positive that this might be �the� plan, but after nearly nine months of diarrhea, I�m not sure I have that much positive energy left!

Tonight I am going to try and relax. I have some mindless knitting I can work on. Go love those babies...
~Shannon and the gang.

Saturday, May 19, 2007 11:20PM CDT

Not much going on around here. Ethan had some severe tummy pains last night, but they resolved pretty quickly with some meds. It was mild compared to the usual, but still really bummed me out that it happened again. We sure were hoping that the vincristine and dexamethosone were to blame, but considering we didn�t get them...who knows!

The boys are getting really excited about summer vacation. Ethan has 4 more days of school left (actually 3-1/2 since Thursday is early release!) and cannot wait. Wyatt is happy to know he will have his brother around to play with ALL DAY! I am going to have to come up with some fun stuff to keep us busy. Ethan has been trying to talk Daddy into a baseball camp at the local high school. I think he almost has him talked into it, but we will see.

I�m off to bed...go love those babies..
~Shannon and the gang

Wednesday, May 16, 2007 9:01PM CDT

We had a great visit at the clinic today. We saw Dr. Bowman and discussed lots about Ethan's tummy issues. He is going to contact Dr. Shelton and see what his opinion is. The last child they had that had this same problem was diagnosed from a biopsy...not really the route we would like to go right now, so please...lots of prayers that they can figure out a less invasive way to get this figured out. Dr. Bowman said as of right now that Ethan doesn't look too skinny to him, but just keep our eyes on him. Chemotherapy went off without a hitch and our port was flushed and should be good to go for the next four weeks!

Our relationship with Dr. Bowman has grown so much over the last few months since we have been seeing him at the Lewisville clinic. I have always known he was a brilliant man and felt blessed to know that I could ask him any question about Ethan's care, prognosis or future and recieve a completely honest answer. Lately we have been able to step past the doctor/patient relationship and spend time learning more about each other. He is intriqued to learn about Ethan and his likes. I can see Dr. Bowman now looking forward to watching Ethan grow up. Before my visions of those days were skewed with piles of research and questions about his cancer treatment, but today something snapped. I was able to see Ethan past his cancer. I am not certain what did it or even what spurred the change of attitude, but I'm glad it did...speaking of being past cancer...

I am excited to deliver some really incredible news...

Ethan will be THE Honored Hero for the Leukemia/Lymphoma Society's North Texas Light the Night walks this year!!!

This is the third year we have been involved in this walk and couldn't be more excited about this honor for his last year to walk as a patient...next year he will walk as a SURVIVOR! Dr. Bowman was also very excited and really pumped Ethan up about the meaning of it. He also told me he would be honored to help me with my speeches...yep, I will be speaking at some pretty big functions over the summer...wish me luck!

Our team is already registered at Light the Night for the walk in September at the Dr. Pepper Ballpark in Frisco, TX. Feel free to sign up to walk with us. We are under Friends of Heroes as the local team name...Ethan's Our Hero. If you aren't local but want to do something to contribute...please, make a donation to our team HERE or join up and make a team in your local area.

On a silly note, yesterday we celebrated Wyatt's Half-Birthday. He was so excited by this and it amazes me how much something so small can delight a child. I baked him a "cookie cake" and decorated it for him. Nothing huge, but something he has been telling everyone he sees about. My darling little boy...as much as I love to see him grow up, I so desperately want him to slow down!

Tonight I was treated to a fun evening at the salon by my husband. I have a new do and feel like a woman again...now, I just have to see if I can fix it tomorrow! I am off to relax and watch some TIVO, maybe even knit a little.

Go love those babies
~Shannon and the gang.

Monday, May 14, 2007 10:01PM CDT

We had another wonderful visit to the dentist today. Ethan had his upper right side fixed today and now only has the lower sections of his mouth to complete. He is so excited, says the dentist is awesome. Of course, it isn't completely comfortable, but said he would rather go to the dentist everyday than to have another spinal tap. I only wish I could make that come true...minus all those dental visits! :)

Wyatt also got to have a visit today. A pretty great turnout indeed. He was his typical silly self and quite the charmer. I was really proud of him and Ms. Carol would be so proud to know that he let me help him brush tonight! Now I have to be a better mommy and do some great flossing of those kiddos teeth too!

The rest of the week should be rather uneventful. We have a visit with Dr. Bowman on Wednesday and I am looking forward to that. I am hoping that Ethan gets a good checkup, but I do know Dr. Bowman will be so excited to see his teeth! Of course, Ethan's tummy problems are doing their typical thing and he is miserable. I am ready to discuss this further with Dr. B and figure out where we go from here since all of the test have come back negative for any bacterias.

I am off to get things together for tomorrow...go love those babies..
~Shannon and the gang

Friday, May 11, 2007 1:20 PM CDT

Here you go...I love it, think it is adorable. Of course, if you haven't seen the movie, it probably makes no sense...sorry!

Thursday, May 10, 2007 8:20 PM CDT

No luck on the video of Wyatt dancing yet, but there is still tomorrow!

Ethan was a champ at the dentist! (Did we expect any different?) He even decided against using the laughing gas, but told me he couldn't stand the noise and would like the gas next time. I am betting he will go without it next time too, but we will see!!! He was feeling great and after the numbness wore off he was back to normal. We are headed back on Monday to do the upper left side next...he is excited...I sure wish Dr. Strole would do my teeth!!!

I'm off to do more laundry. Have you ever noticed that is all I do? Man, where does it all come from?

Go love those babies...
~Shannon and the gang

Wednesday, May 9, 2007 10:28 PM CDT

We made it to the Lewisville clinic for Ethan's chemotherapy today. He was a trooper as usual. His blood counts were right where we want them to be to start his dental work tomorrow. He is looking forward to getting it done and I am honestly looking forward to him getting them fixed. Poor guy...it took way too long for his counts to get to a point where he could fix them!

The little ones are maturing before my eyes. Wyatt has a new passion...High School Musical...I am going to have to charge the camcorder. He has been practicing daily on the dance moves and is quite impressive with the basketball. I get tickled everytime he shows it to me. Of course, you would have to had seen the movie to truely appreciate it, so if I can get him to do it for me I will do my best to dig up a video of the song too.

Abagail is in full tantrum mode most of the time. She has begun to communicate with us so well, but we still have our lapses of understanding and that is when she throws the wildest fits. Feet kicking, arms flapping, and lots of screams...boy, I didn't miss those days. I hope they are short lived...wish us luck!

I have once again stayed up entirely too late and need to get headed to bed. Please take time and go love your babies...
~Shannon and the gang

Sunday, May 6, 2007 10:36 PM CDT

Ethan survived his trip to the dentist and can't wait until Thursday to get his first set of fillings. He will have a total of 8 fillings and 2 sealants before they do his cleaning. He has a little bit of anxiety about the fillings, but it is not enough to hold him back...his teeth are begining to hurt and he wants to get them fixed.

I haven't mentioned it lately, but his tummy issues are still the same as always. We haven't gotten all of the reports back on his stool samples, but the majority of them have been negative...meaning we don't know anything yet. I am afraid we may have to go with some more invasive procedures to see where we stand, but I am just assuming, so it is best to wait until Dr. Shelton and Dr. Bowman talk it over. We will see Dr. Bowman on the 16th of the month and I am pretty sure we will be making some serious decisions on that day.

The weekend was busy, but nice. It was great to spend time with John's parents on Saturday night playing cards. The kids were so very sweet passing out hugs and kisses to everyone before going to bed. The boys even went straight to sleep with no problems...they had to make liars out of Mommy and Daddy when we say they make it impossible to get them to go down. Little turkeys.

Once again, we start another week. I can't believe summer vacation is almost here. The boys are so excited and overcome with anticpiation about the upcoming plans we have. Time will fly by I'm sure and I will be sharing pictures with you as we have fun.

I am off to get some rest and get ready for the week. Go love those babies...
~Shannon and the gang

Tuesday, May 1, 2007 9:32 PM CDT

We are moving along in the week, just the same as always. Tomorrow is hump day and I can tell Ethan is excited that it puts him one day closer to the weekend. I haven't told him yet that he is going to get to see Ms. Cara on Thursday. I know he is going to flip.

Every day he is growing into such this wonderful young man. He holds such wonderful characteristics that sometimes I am rather jealous of. Honestly, I don't know if it is possible for us to be any more different. He is a boy that all the kids want to be friends with. Girls swoon over him at recess (he complains about it all the time)!!! He is confident in his own skin and dreams about doing things that he is not physically able to right now. I know that he is ready to be done with his treatment, but he never complains.

Lately I have been the kind of mother who complains all the time. I have reached a point in my life that I am not really proud of. I think I used to be alot like Ethan, but have lost myself somewhere. I am going to pull my strength from Ethan...I want to be a better person. I want to be a better mother and I'll even do my best to be a better wife.

Life has been swirling around me and although I have been enjoying it, I think I might have forgotten how to cherish it. Sometimes it is something small that will open you eyes...for me it was this...

Have you ever seen anything as wonderful as this? I was working on this for Mother's Day gifts (sorry to ruin it) and was taken back when I saw it full size on my screen! Those are MINE...and they are INCREDIBLE! I am so LUCKY!

I am off to bed...go love those babies...I am going to use my own advise and do the same...
~Shannon and the gang

PS...if you thought that was great...look at what started it all. This is SO my Wyatt. He is a little cowboy, through and through. Nothing but "tight pants" (Wranglers), his boots, a belt and pearl snap shirts with do.

Monday, April 30, 2007 11:14 AM CDT

Ethan was not really excited about heading to school today. His left ear is still bothering him and now the right one is really getting to him. He is still on the antibiotics, so hopefully they will work soon. I made an appointment for him to see the dentist on Thursday and since we will be in Ft. Worth for that, I decided we would visit the Ft. Worth clinic this week.

Ethan has had a horrible time with his teeth recently and I have heard rumors that the chemotherapy destroys the teeth. I'm sure his sweet tooth hasn't helped with those matters either. I am hoping to be able to get a game plan to fix those teeth and get started on a better path for him.

A busy week ahead of us...go love those babies..
~Shannon and the gang

Thursday, April 26, 2007 10:34 AM CDT

Ethan escaped the horrible viral throat infection...THANK GOD! Unfortunately, he has developed a horrible ear infection. He just can�t win, can he? It began to hurt two days ago and just as directed by the ENT, we did the Ciprodex ear drops. It doesn�t seem to be working a bit, so Dr. Bowman has ordered him an antibiotic that I will pick up from the pharmacy later today since we can�t risk the infection getting worse with our counts were they are.

We went to the Lewisville clinic yesterday, but ended up not getting chemotherapy. His counts were okay (ANC 888), but since he just wasn�t feeling right, Dr. Bowman wanted to me to wait until this morning to give him a report. Thank goodness we held chemotherapy, because Ethan had his 4th night in a row of a distended belly and being extremely uncomfortable due to the vincristine he got last Wednesday. This steroid pulse was also pretty hard on him, but thank goodness it made him hungry. He gained 2-1/2 pounds over the last week! Of course, I understand, most of this is water gain and he will drop some of it, but it is a GAIN! Ethan has been such a trooper lately, drinking Pediasure without a complaint. He even reminds us that he needs one everyday. I am so proud of him for understanding it is important for him to get the nourishment he needs.

So, we are back to the Lewisville clinic today to get our chemotherapy. I am going to let Ethan get as much school as he can today, then we will head that way! Ethan wants to be at school, but misses so much that it is nice that the Lewisville clinic is so flexible about when he comes.

Laundry and dishes are calling my name...go love those babies...
~Shannon and the gang

Monday, April 23, 2007 10:11 AM CDT

Well, the excitement of week 100 hit a brick wall Thursday morning when Abagail woke up with a fever. She hadn�t been herself for a few days and I knew it was time for visit with Dr. Day. He confirmed she had a viral throat infection...YUCK...no antibiotics would help. So we headed home to wait out the next few days of misery and Tylenol.

As we got in the car, Daddy called...he had just picked Ethan up from school with a fever. BLEH! The nurse said it was 100 degrees, but we never did get even a 99 at the house. Ethan wasn�t feeling himself, his tummy was really bothering him and he was really tired. So it was then we started holding our breath for him to get the sore throat. We had an appointment Thursday afternoon with the ENT and all went well. We decided taking out his adenoids was the trick and are glad we made the decision. We delivered the stool samples to the infectious disease doctor and were told the results could take up to a couple of weeks...just about what we expected.

All went well (not really �well� but it went) around the house, until Friday night when Wyatt spiked a fever and felt horrible. His throat looked like hamburger and he was miserable. Abagail was starting to get back to her normal self and now we were losing Wyatt to the virus. So he laid around in misery all day Saturday and Sunday, yet has already begun to eat massive amounts of french toast this morning, so I know he is getting back to normal.

Unfortunately, Ethan was up all night with horrible tummy pains. His stomach was very firm and full of gas. I really think this is from the vincristine, but we will have to wait and see if it happens again to confirm that. His throat is really starting to bother him, so I kept him home from school today. I am hoping if he catches this virus that the doctors will let us stay home, considering that both Abagail and Wyatt have had it, but I don�t know if they will. I know that a fever is normally a ticket to the big house, but we�ll see!!! I am going to plead my case, believe me!!!

So, no fever as of yet, but a sore throat...wish us luck!!! Go love those babies...
~Shannon and the gang.

Wednesday, April 18, 2007 10:25 PM CDT

So today was the start of something very exciting...

WEEK 100

Why is this important? Well...this was the last time he will recieve vincristine! We have 1 more pulse of dexamethasone for the next 5 days. By next Wednesday, we will officially be in the final stages of Ethan's chemotherapy treatment with only 46 more weeks left. This is exciting and scary at the same time. I do know it is a HUGE ordeal, merely because Dr. Bowman has been talking about this for weeks now and was so excited to announce it today!

The day was not entirely full of good news. Ethan has lost another pound. He now weighs 59 pounds / 27 kg. This is the weight that the GI doctor was concerned with. Dr. Bowman did a full check of him and did confirm he was losing some serious muscle mass in his legs. He wants me to contact the GI doctor and let her know where we are and what our plans are. He didn't feel like we needed to start any invasive nutritional procedures until we get the results from Ethan's stool samples. If we do happen to find something treatable, Ethan will be able to get his nutrition back on track quickly. If not, we will cross that bridge in two weeks. For the time being, Ethan is going to have to start drinking some Pediasure and hope that helps.

We recieved our last dose of vincristine, a boost of IVIG, a huge hug for making it to week 100 and we were on our way out.

I am off to get some rest, a trip to Ft. Worth is in the books for tomorrow. We will be delivering poo samples and heading to the ENT for a checkup...go love those babies...
~Shannon and the gang.

Monday, April 16, 2007 1:42 PM CDT

After speaking with Dr. Bowman on Thursday afternoon, it was decided that we needed to go visit an infectious disease doctor. They had conversations and felt this was beyond the relm of GI or Oncologist.

So Friday morning we made that erie walk up the steps to Dr. Shelton's office. A rush of emotions crossed over me as I walked by the spot where I called my Daddy to ask his advise after a doctor had just told my he "thought" my son had cancer. As much as I wanted to run, I knew that his was the place we needed to be.

Dr. Shelton started off the visit asking lots and LOTS of questions. Questions I would have not even thought pertained to the situation, but this man really knows what he is doing and we are glad to have his services. He also spent some time bragging on Dr. Bowman, telling us stories about how St. Jude never wanted to let him go. They knew that Cook Children's would benefit from him coming to really get things together for oncology, but they wanted him at St. Jude. He is an amazing doctor and has led the way for many protocols to treat ALL. He ended by saying Dr. Bowman would never admit to any of this, so don't try to ask....we laughed and said, then I bet you would never agree that Dr. Bowman said you are the best in your field. His reply, "Don't believe a word of it!" Now, this is when you know you are dealing with the best! We are so lucky.

So all in all, it was concluded Ethan probably has some weird, rare micro-organism. If it was an inbalance of his biotics, the months of pro-biotics should have done the trick. We have been giving him IVIG for the last three months and if it was something typical then the anitbodies from the IVIG should have nipped it. Basically, I am the lucky soul who get to collect Ethan's stool for a few days then deliver it Ft. Worth to the lab. Typically this will take 7 - 10 days for them to find anything, but HOPEFULLY we will find something we can treat.

This week is full of appointments. Wednesday we will go to Lewisville to see Dr. Bowman, get IVIG and chemotherapy. Then on Thursday, we will deliver poo and visit the ENT for a checkup on Ethan's ears.

Thank you for taking the time to visit and check in on us...go love those babies.
~Shannon and the gang

Thursday, April 12, 2007 12:17 AM CDT

Ethan went to the Lewisville clinic yesterday for his chemotherapy. He did well and was in quite the fun mood. We spent the time between his blood draw and appointment talking. Sometimes Ethan really wants to talk about games/school/friends and other times he is more serious and wants to talk about his cancer and side effects.

Yesterday was a serious day. We started off talking about all the fun things we have planned this summer and I could see his eyes light up as we talked. Unfortunately he told me what was really on his mind. He just really hopes his diarrhea is gone before summer. Poor guy, he knows how much fun camp is, can�t wait to go the beach (Lighthouse Retreat...I�ll fill you in on that one another day!!!), but also knows it won�t be as much fun if he is constantly having to go potty!

He spent most of the night in the potty last night and was really tired this morning. He decided he wanted to tough it out at school, but I won�t be surprised if he comes home. He was down to 60 pounds yesterday. John and I are astonished every time we see him. We know that he is getting taller and that has something to do with how thin he looks, but every day his clothes are a little bigger. Two years ago I donated the clothes he had outgrown and we were lucky enough to receive a bunch of hand-me-downs in his �new� size. Now we are going back through is clothes again, not because he has outgrown them, but they are all too big.

Now that he is thinner, he fits in with his friends better. He no longer looks like a little boy who is taking massive amounts of steroids. Most people think he looks great. They see him being silly and making jokes...Me, well, I see a little boy who comes home from school exhausted. It completely wipes him out. He complains that he can�t keep up with his friends. His energy levels are minimal and he is TIRED of going to the bathroom.

I have sent an email to Dr. Bowman to discuss my concerns. I know I will hear back from him soon. He is such an incredible doctor who loves his patients like his own. We are so blessed to have him. Yesterday at lunch Ethan and I were talking about guardian angels. We talked about my Mom, Granddaddy and all of the friends he has lost, who are watching over him all the time. He said the sweetest thing...he thinks Dr. Bowman is also his guardian angel. I told him he was probably right, but the best comment came when I asked if he thought Dr. Bowman had angel wings. He thought about it and said, �Yep...that is why he wears a sweater vest, to cover his wings.�

What a thought...that boy...he is amazing!

Go love those babies...
~Shannon and the gang

Monday, April 9, 2007 9:34 AM CDT

Wow...it's been a while since I posted. Tax season is neary an end and I am SO ready for that. My last day of working will be April 17 and it can't get here fast enough.

The kids are doing well. Ethan has his good days as well as his bad. Some days he is full of energy and others he just lays around. The other two are quite the friends/enemies. Abagail is constantly yelling at Wyatt about something...not sure what it is, and unfortunately, Wyatt thinks it's funny. NO, this does not help matters. One moment they argue and mere seconds later they are cuddling under blankets. Man, those two keep me busy!

All in all, I believe all the children have a goal of eating the massive amount of candy the Easter Bunny left as quickly as possible, and as their parents Johnny and I are sneaking as much as we can to save their teeth. Awwww...the things we do for our kids.

Go love those babies...
~Shannon and the gang.

Wednesday, April 4, 2007 9:33 PM CDT

So I still haven�t had a chance to go through the pictures from the weekend, but I wanted to swing in and give you an update on our clinic visit today.

Ethan was feeling great when we arrived and Dr. Bowman was very excited to see him so active. They talked a bit about potty/tummy issues and energy levels. Dr. Bowman is reviewing all of Ethan�s microbiology reports since September and may be ordering more stool samples soon...YIPPEE...I love collecting poo! He was extremely happy to see Ethan feeling so well, yet still very concerned with fixing his issues.

Another surprised happened when Ryan (our friend Shelbie�s brother) enter the clinic. Ethan loves hanging out with Ryan, and believe me, those two can create a lot of noise and some really hysterical moments. So I let them hang out for a while and love what that does for Ethan�s attitude. There is something about having a friend who understands that this cancer stuff stinks, but most importantly understands that Ethan still wants to be an eight year old boy. Thanks, Ryan, for hanging with Ethan...oh yeah, and Ryan...NO, YOU BROKE IT!!!!!

I am off to get ready for bed. Abagail has her 18 month check up tomorrow (yes, I realize she is 20 months, but we postpone them to keep my well-baby out of the doctors office during flu season). Wish me luck, I hate vaccinations...

Go love those babies,
~Shannon and the gang

Wednesday, April 4, 2007 11:04 AM CDT

Okay, so I still haven't had a chance to breathe since our company left. I worked last night and need to take Ethan to the clinic this afternoon before heading to work again...

I promise I'll be back soon with an update, just wanted you all to know we are doing well. Ethan's tummy issues re-appeared and are back in full force...bleh...

Go love those babies,
Shannon and the gang

Saturday, March 31, 2007 9:34 PM CDT

Today my baby boy is EIGHT years old. I almost can't believe it. It seems like just yesterday we found out we were going to be parents for the first time...then we just brought him home from the hospital...now he is EIGHT! Wow, they weren't kidding when they said times flies.

We are busy, busy enjoying the best company. Right now Ethan's buddy is here for a sleepover and they are watching Eragon. Boys and dragons...no better match!

We only have a few more days to enjoy our company, they leave for their new home in Las Vegas on Tuesday...dang Air Force, they really need to think about the wives more...we need them to be stationed in Texas!!! Maybe next time!

So I will be gone for a few more days, then I will give you guys a great update on our visit, hopefully with some pictures!

Go love those babies...
~Shannon and the gang

Thursday, March 29, 2007 10:07 AM CDT

So Ethan made it both Monday and Tuesday for the full days at school. Yesterday he was experiencing some severe bone pain from his vincristine last week and only made it until 9 am. He tried though!

We headed to the clinic for his chemotherapy after picking him up from school. His counts are just as they should be and much to his dismay, he got his methotrexate shot. Poor kid, he sure is getting sick of all these shots. Not to say I blame him, I bet I would be much more of grouch than he has been.

Today his buddy is arriving for his visit. Ethan could hardly sleep last night...he was too excited about Sean coming. We have big plans for the weekend...lets just hope they all work out.

I am very glad to report that Ethan hasn't had diarrhea in two...YES...TWO days! This is amazing. I hope we are on our way to normal bowel functions again...poor kid..he so desperately needs to catch a break!

I am off to finish doing some laundry...I will try to get back later with some pictures for you.
Go love those babies...
~Shannon and the gang

Tuesday, March 27, 2007 1:18 PM CDT

So guess what....Ethan went to school yesterday! ALL DAY!!! He is also there today, and not one call from the nurse! I am so excited. When he got off the bus yesterday, there was a spring in his step. He was so excited to sit down and do his homework...my boy is coming back around.

It is so difficult on him to be isolated. I know it was for the best, but I am glad it is over. I asked him how he did with all the tummy issues he had going on and he said it was a little bit of problem, but SO worth the trouble. I am glad he is able to get back with his friends.

He seems to be feeling okay. I am hoping we are getting back to normal...or at least our normal. The tummy issues are still there, but slowing, so hopefully we are on our way to recovery with that.

I thought I would have time to write, but the beauty queen is needing her mother. I will try to get back to the journal soon, but these little ones are keeping me REALLY busy!
Go love those babies,
~Shannon and the gang.

Thursday, March 22, 2007 4:40 PM CDT

A day full of good news and more questions, of course!

1: Emma is back home and feeling better. Lots of fluids and anti-nausea medicine has done the trick. They are having a horrible time with this virus in their area. Hopefully she will be back to her normal self soon, I'm sure her Mommy and Daddy would love that.

2: Ethan is going back to school on Monday. YES...he was released to attend school again, now lets just hope they don't have too many viruses/bugs floating around his school!!!

3: Ethan's spinal fluid was CLEAR! YIPPEE!!! We don't have another spinal tap until September. WOW...September...we will still make weekly trips to Lewisville for chemotherapy and count checks, but will not be required to make the long trip to Fort Worth again until SEPTEMBER! (Can you sense my excitement about this?) I did get a little emotional as I was telling the gals at the front, we have made such wonderful friends and we miss them when we don't go...

The questions...well, they revolve around Ethan's constant tummy problems. The doctors are not very certain about what is going on. We would all like to believe it is an issue with his biotic levels, be it if they are pro-biotics or anti-biotics, but we are really beginning to wonder. They did an x-ray of his tummy today and it was all clear. This is a good thing, considering he had vincristine today (which is known for constipation). We are continuing to keep up with the AlignGI the GI doctor prescribed and hopefully it will do the trick...eventually!!!

So I am off to figure out dinner and love on my babies...go love yours, too!!!
~Shannon and the gang.

Wednesday, March 21, 2007 4:04 PM CDT

The boys are coming home today and I don't know who is more ready. I miss them terribly and so does Abagail, but poor Daddy...he has tolerated all the "girlness" he can stand and is in need of his mud-monsters.

On another note, my best friends little girl has been admitted to the hospital this afternoon. She started vomiting yesterday. Hadn't been able to keep anything down. She is severely dehydrated and they are giving her Zofran to help with the nausea. Her tummy is so dry and empty that he is just heaving constantly. She is the same age as our little Wyatt and I can't imagine. I am worried, but know she is in good hands. Hopefully they will get things under control soon.

I am off to get ready for work, but needed to update on another website about Emma and decided to update here, too. Go love those babies...
~Shannon and the gang

Monday, March 19, 2007 9:09 PM CDT

Ethan is having a great spring break. He has been able to go spend a few days at his Mamaw and Papaw's house with his cousins. I am sure he is having a blast. I miss him while he is gone, but he SO needs time away from me.

Wyatt was also lucky enough to get to go, too! He LOVES to spend time with his cousins and always has fun while he is there. He is still young enough to miss us and want to come home, but gets busy enough to forget.

Abagail and I are hanging out, trying to keep each other busy. I did manage to get her Easter dress cut out, but will have to wait till tomorrow to start sewing on it. For some reason, she so wants to help me sew, but gets more in the way as she gets older.

So life is moving on around us. We are trying our best to keep up. I am always thinking of our other friends who are having difficult times right now. Please keep all these children in your thoughts...and go love those babies...
~Shannon and the gang.

Friday, March 16, 2007 9:10 PM CDT

Friday is here and we are preparing for Spring Break. Not sure if it will be much different than the last few weeks, especially since Ethan has been doing school on a homebound basis. He does have an appointment in Fort Worth next Thursday for a diagnostic spinal tap. It seems like forever since we have had one and there will be six months before we have another one.

Ethan has only 3 more spinal taps in his protocol. We are heading into the last phase of his protocol in the next few months and I am having those typical feelings that have cropped up on me each time we decrease his chemotherapy.

I know this is a good thing. I know he needs to be free of the toxins we are using to keep the cancer away. I know I shouldn't let things get to me this much, but I am scared. I wake up scared, I go to bed scared. Scared "it" might come back. I try to make plans for our life, but I always come back to my fears of what if...I know I shouldn't...we try our best to keep moving on, but come one...the reality of it all sucks!

To change subjects, I quite frankly am not in the mood to think about things right now, I am going to knit! Go love those babies...
~Shannon and the gang

Tuesday, March 13, 2007 10:58 PM CDT

We are moving through the motions. I can't believe it is almost Wednesday again. Then again, we were at the clinic on Friday, so it hasn't gone "that" quickly!

Ethan seems to be feeling okay. Not great, he says, but well enough to spend some time outside and enjoy the beautiful weather. We are hoping to get him back into school after spring break (which is next week), but we will have to see what the doctor says about that.

Abagail is almost back to normal, and boy I am ready for that. Today she was more smiley, giggling continuously at things that caught her eye, and a little less clingy. She has developed the most adorable laugh...I must try my best to get a recording of it, if I do, I will share.

Wyatt is...well...Wyatt! Man, that kid is incredible. He keeps me busy with his antics, and trys his best to get out of trouble with his adorable little grin and sweet remarks. I am going to be in big trouble when he is a teenager...

I am off to bed...go love those babies.
~Shannon and the gang

Sunday, March 11, 2007 9:01 PM CDT

You know, there are times when you come to the conclusion you were just meant to be together. That time came for Johnny and I last night. Don't get me wrong, we have known this for some time, but in times of "sick" kid mode...it becomes more obvious! When things go bad, we just go into this mode. It amazes me how smoothly a horrible situation can go without us having to say a word to each other...man, I am one lucky gal!

So Abagail must have had some 24 hour bug of some sort. She was quite pukey, needed her mommy and quite frankly..not in a good mood! Tonight she seems to be much better, not feeling too yucky. Hopefully she will be sleeping in her crib tonight, because I really need a good night sleep!

Ethan seems to be feeling alright. His tummy problems are still around and he is really getting tired of it. He has one more week until Spring Break and he is ready. Although, I think he is even more excited about his buddy coming to visit for his birthday, or should I say their birthdays! They share the same birthday and are ready to bring in eight with a bang!

So life is moving along. Nothing too exciting (which is such a great thing!!!) and if we can all avoid whatever it was that Abagail had...we will be great!

Go love those babies..
~Shannon and the gang

Wednesday, March 7, 2007 9:28 PM CST

Another week marked off the protocol road map today. We headed to the Lewisville clinic to see the infamous Dr. Bowman. He had very mixed feelings about Ethan today. He was happy to see he was feeling better, but upset to hear about the tummy issues and weight loss. Yes, we are down another 2 pounds. We are going to do a dose of IVIG on Friday to see if that will help with the diarrhea. He feels like it could help with the biotic issues...don't even get me started...I have no idea how I feel about this. So another trip to Lewisville this week, but if it helps...I am game.

We also went to Fort Worth yesterday for a follow-up visit with the ENT. He was concerned with the amount of drainage Ethan was having from his ear, but happy to see it was still draining. We started doing antibiotic drops in his ear with hopes that it will dry up things quickly. We will be visiting him again in two months and he said that will continue until we are done with treatment since our Ethan is a special case.

So things are still interesting around here. Never a dull moment! I am off to relax from my evening of work.

Go love those babies...
~Shannon and the gang

Monday, March 5, 2007 11:06 AM CST

We are starting another week in our house. With me working various days and Ethan doing homebound school, the weekends blend into the weekdays. So Monday it is and Ethan's teacher has come and gone. The kids are watching some of their favorites shows and I "should" be cleaning.

Ethan's tummy is still quite upset, yet, thanfully he has lots of times when he feels okay. I am hoping we will get some more insight about how we should handle this on Wednesday when we see Dr. Bowman. So far his weight is staying in a pretty good range and he hasn't stopped eating, so this is a good thing. I also haven't heard any complaints about the ear latey...even better news!

So I guess I am off to start some laundry, do some dishes and other fun things...

Go love those babies,
~Shannon and the gang

Saturday, March 3, 2007 9:50 PM CST

There are days when things are bad and you can't imagine life any other way. You sit and sulk in the life that was dealt to you and you are just miserable. I have been in those days lately.

Tonight...things have changed.

We spent the evening with great food, great wine and most importantly, great friends (some we just met)!!! Capital One and the Dinner Station teamed up to have a great event to give back to the community. AWESOME...WOW...what a night. They thought of everything. We were able to drop the kids off at a local daycare center to enjoy an evening of adult time.

While at the Dinner Station we were treated so incredible, words could not even describe it...We made 8 full dinners for our family while drinking wine, tellng funny stories and sharing our cancer experiences with one another. Sometimes, we even acted like we were normal families...forgetting what we have been dealt. We met families who have struggled with normallcy like we have. We met families whose lives make ours look simple. What an honor to be around so many people who are cherishing life and each moment it entails.

So tonight my heart is a little lighter. Things are looking up again, or at least I have dinner planned for the next eight nights...that has to count for something, RIGHT?

Go love those babies...
~Shannon and the gang.

Friday, March 2, 2007 9:33 PM CST

Yet another day of miserable tummy issues for Ethan. Poor kid, wish I could do something to make him feel better. Tomorrow morning I will be weighing him to be sure he isn't losing too much weight. I look at him every day and am still stunned at how skinny he is. I feel so badly for him, knowing he is so miserable.

His ear is starting to drain yucky mucusy (is that even a word) slime. Nasty stuff, but at least it is draining. Right now it is clear, meaning it is "just" drainage. We will begin to worry if it becomes greenish/yellowish just like you would with a sinus infection. He said he can hear a little better out of it, just not like he should.

So our days have been consumed with making sure he isn't too miserable. Honestly, I should tell you, he is still in good spirits. Never does he complain, only when his tummy hurts. I am humbled by his strength and his hope that keeps him going. He just "knows" it will all be better soon.

I just wish I felt the same...

Go love those babies...
~Shannon and the gang

Thursday, March 1, 2007 9:01 PM CST

Bleh...

uggghhhhhhhhhhhh....

Why did I open my mouth and say that Ethan was doing better? Didn't I know what would happen? Bleh, double bleh.....

So last night he started complaining about his tummy again. It was full of gas and miserable. I am pretty sure he is having side effects from the vincristine he had last week and we are back on the miralax full time...hopefully that will work. Of course, that means he will be spending lots of time in the potty...poor kid.

To top it off, he also said his ear is driving him crazy! He said it feels like there is stuff in there and his hearing is starting to fade. Bleh...triple bleh! We have an appointment with the ENT for Tuesday afternoon. Hopefully Ethan can hold out until then.

SO...I am trying to stay positive, but I am running out of juice. I guess the greatest thing is the cancer is still gone...now if we can just make it through the treatment....

Go love those babies...
~Shannon and the gang

Wednesday, February 28, 2007 11:08 AM CST

Abagail is on the mend, actually back to "almost" normal. If it weren't for cutting those darn molars, she would be fine.

Ethan is loving his homebound teacher. I would say he is starting to get his energy back, not completely back to normal, yet I can see his stamina growing daily. I hope he continues to do so well and hopefully will be able to get back to school soon.

We went to see Dr. Bowman in Lewisville on Monday and it went perfect. Ethan's counts were elevated due to his dexamethasone pulse he ended on Saturday, but everything else we great. His tummy issues come and go, still not normal, but at least he has days when he isn't in the potty all day!

Thanks for checking in on us...go love those babies.
~Shannon and the gang

Saturday, February 24, 2007 9:13 PM CST

Quite the busy day around our house and unfortunately it started last night, when Abagail decided to scream all night. She was feeling miserable and we couldn't figure out what was going on. John and I both thought it might be gas (boy, isn't she going to love to read that later in life) and decided to let her sleep in while the boys headed to Grapevine for a fun day at Main Event with the Starlight Foundation.

All was well until I went to fix Abagail's hair and noticed her ear was completely crusty...ewwwwwwwwww! I was now on a mission to get her to the minor emergancy clinic and see if she had an ear infection. My Dad pulled through and spent the morning with us at the clinic...wow, I hate waiting. She did have an ear infection and also a red throat. They put her on some antibiotics and a good nasal decongestion med to hopefully dry her up. Hopefully she will sleep better tonight...boy we sure could use it!

The boys had a blast at Main Event...they went bowling and played video games for over 3 hours and have been talking about it all day! It was fun to see Ethan and Wyatt talk about the experience and talk about how much fun it is going to be the next time Starlight invites them somewhere!

We are off to bed, very shortly...go love those babies...
~Shannon and the gang.

Wednesday, February 21, 2007 2:46 PM CST

We went to the Lewisville clinic again yesterday for our weekly chemotherapy. Things went awesome. Ethan had his port accessed, received his chemotherapy, had cbc drawn, port de-accessed, and we were on our way! Ethan was super brave as usual and handled it like a pro!

We took Wyatt with us so he could see just what "clinic" was. I can't imagine what he has conceived in his little mind as to what we do when we leave him every week and I thought this would be really good for him.

He bravely climbed up on the table next to Ethan as he was getting ready for his port access, reached over and held his hand through the entire thing. I was so proud of my little man, what a comforter he was. He knew the "rules" to not breath in the direction of Ethan's port (since we don't want any extra germs getting near there) and held his other little hand over his face. We asked him if he wanted a mask and he shook his head yes. After placing the mask on him, he said..."Thank you, I don't want to breath any germs on Bubba's port, germs make him sick, and when he is sick he goes to the hospital and I miss him!" Yep, made me tear up! What a doll.

So after it was all over, they both got a toy from the toy chest. Ethan's for being so brave and Wyatt's for being such the big helper.

What a lucky mother I am...go love those babies...
~Shannon and the gang

Saturday, February 17, 2007 8:48 PM CST

We are all hanging in there...recovering from whatever illess we all had. I think everyone of us had something of some kind...not to severe, but sure did make us feel cruddy!

Ethan seems to be feeling okay. He is trudging through his make up work from the days he missed at school. I am ready to get him started on homebound...he sure does need something to keep him going.

Sorry to leave you with such short, non-inspiring...rather emotionless posts, but I haven't been up to writing how I feel lately. I am hanging in there, but I think that might just be it. The world is circling around us as we are making our way through the days.

Go love those babies...I am going to relax..
~Shannon and the gang

Thursday, February 15, 2007 11:13 AM CST

We had a wonderful day yesterday. The boys loved their chocolate and coloring books. Abagail thought her flower was pretty and loved the teddy that Daddy gave her. I was showered with love from my boys all morning and given a really great card. Feeling so lucky to be loved.

Ethan seems to be feeling better, still a little tired, but hanging in there. The babies are feeling horrible and hopefully this cold thing will pass soon. I believe Abagail is cutting her 2 year molars, so she is even extra yucky feeling and requiring lots of my time. I don't mind though...soon enough she will be too busy to snuggle with me, so I'll take all I can get.

We went to the clinic in Lewisville yesterday and Ethan got his methotrexate shot. It went well and he was his typical brave self. We are enjoying going to Lewisville and the staff is incredible. They really spoil Ethan and he loves it. There doesn't seem to be many of the onology kids that go to Lewisville, so they let him kind of have the run of the place. Dr. Bowman said he had plans of expanding the services at the clinic and believe me...we really would love that. The 10 mile drive is much better than 46!

I have his homeschool meeting tomorrow, so hopefully we will get that started on Monday. I know he is ready to get back to his work.

Thanks for stopping by...go love those babies...
~Shannon

Tuesday, February 13, 2007 9:46 PM CST

The table is covered with Valentine's gifts for the ones that I love. I will be putting out the special gift from Abagail and I to Daddy in the morning. Nothing big, just his favorite candy. The boys spent sometime making special gifts for their Mamaw and Grams...those will be delivered tomorrow, as well.

Today I broke the news to Ethan that he would NOT be attending his school Valentine's party. He was bummed to say the least. Daddy will be bringing his special box and valentine's to school and we will pick it up on Thursday so he can go through it. My heart aches for him as he misses out on such special things at school, but I know it is for the best...entirely too much of the flu/bug stuff going around and we don't want it.

We have almost gotten Ethan's homeschool stuff set up and will soon be doing that daily. I hope we can get him caught up on homework and make sure he stays right where he should.

Tonight his father told him about those "create your own story" books and man, does he want some. We will be making the journey to the used book store this weekend and hopefully we will find him some. I find it so wonderful how much that boy loves to read. He reads a Magic Treehouse book every night..not some of it, the whole thing. I believe he is on book 21 or 22 and has already told me that he is almost out of them...I'll also be searching for those at the store too.

I am off to relax after working this evening. I hope all is well with you and yours...thank you for checking in on Ethan...go loves those babies...
~Shannon and the gang.

Sunday, February 11, 2007 10:11 PM CST

I know you have all been waiting for me to update, but we have been busy...sorry! Ethan seems to be feeling better. Not sure what was making him feel yucky, but thank goodness, for now, it seems to be subsiding. I am bummed, though, because the babies are now feeling crummy. I worry that Ethan might pick up whatever it is that they have contracted...I hope not. Trying to keep siblings away from each other is difficult, but we are trying.

On a lighter note...do you know what today was? Abagail turned 18 months old. I can't believe it. Wasn't it just yesterday we found out we had a baby girl in our family. I just adore that little girl, she is growing up so fast and really needs to slow down.

I wanted to re-share with you some of the pages I have done of her.

And now a new one from today...

Abagail has recently developed quite the jealous side. She can't stand it when Daddy hugs me...he is only for her. No kisses for him either...his kisses are hers. I can't hold her brothers...only her. Papaw must pay attention to only her. Ethan can't play with Wyatt...yep, you guessed it..only her. Crazy girl...you would think all the boys in this house have treated her like she is a princess and rules this house!!!

Go love those babies...
~Shannon and the gang

Saturday, February 10, 2007 7:53 AM CST

Fever of 38.8 degrees: Miserable

4-1/2 hours in the ER: Dreadful

Blood counts high enough to come home: Delightful

Bleh...that was my evening. A dose of Rocefin and we are on our way home. Not sure what is going on, except the Dr. believes it could be the ear...AGAIN! He doesn't have the flu...at least we know that.

I will update later...go love those babies.
~Shannon and the gang

Wednesday, February 7, 2007 6:18 PM CST

We have returned from the clinic in Lewisville and had a great experience. Ethan loved the nurses there and the laidback, casual atmosphere they have. Dr. Bowman did a very thorough exam of Ethan and even left the room for a moment to check over this chart before making any decisions.

Ethan didn't get his chemo shot today and won't get his 6mp tonight, but that is all we know. I have been told to call in the morning to report on Ethan's condition. We will then make a decision from there.

Dr. Bowman has decided Ethan will be placed on homebound schooling until late March. He is just concerned Ethan will not get the chance to recover properly if he is continuing to battle different sicknesses he gets at school. He also feels he is too weak to participate fully in school and by doing homebound he will be able to keep up with his work, not get anymore absences and attend some of the special activities depending on how he feels.

So life is making another change around here, but we are going to attack it with all we have. Ethan seems positive about the whole situation and thinks it is a good idea. I know he likes the idea of having a special teacher come personally help him with his work.

I am off to make some more phones calls, hopefully we can get this rolling ASAP!!!

Go love those babies.
Shannon and the gang.

Tuesday, February 6, 2007 6:18 PM CST

Yet another day of feeling crummy. Ethan woke up this morning with the same exact symptoms he has been suffering for days. I decided to call the clinic to get their opinion. Basically they wanted to know what his blood counts are, so we headed to Lewisville Hospital for some stat labs and spent the afternoon waiting on results.

At 1:45 we got the call that is counts were "cancer normal" aka, just about where they should be for a kid on chemotherapy. This was all fine and dandy until I checked his temperature and it was almost 102 degrees...bleh, I knew this was a ticket to the hospital. Within minutes of the temperature check, I recieved a phone call from THE Dr. Bowman.

We talked over Ethan's symptoms, temps and counts. All in all, Dr. Bowman felt Ethan was in no serious danger of running a fever, and it is most likely some sort of virus or cold. We are scheduled to be at the Lewisville Clinic in the morning to meet with Dr. Bowman, and Ethan will get a complete exam. His chemotherapy with be dependent upon what Dr. Bowman decides after seeing Ethan.

So, basically we don't know much more than we did the other day. Ethan is feeling crummy, his headaches are horrible, his counts are "cancer normal" and he is SO sick of missing school. Maybe, just maybe, tomorrow will bring us some answers.

I am going to try to get some rest and try to relax. My mind is full of questions and concerns. My heart is full of worry, but for now, I am just going to love my babies...go do the same!
~Shannon and the gang

Monday, February 5, 2007 9:25 AM CST

It really has been a while since I have updated...sorry!

Ethan has basically felt crummy off and on since then, with some really great moments in between! He attempted school on Friday, but had to come home at 10:00 am. He rested most of the day and still felt rather sluggish.

Late Friday night, Johnny got called into work and at 7 am when he hadn't come home, we had to call up the troops to help with the kids. You see, I had to work at 9. So my WONDERFUL in-laws took the kids for the day, no questions asked...Aren't I a lucky gal? So off to work and by 5pm, there were still no signs of Johnny coming home. Since I had to work again Sunday, Ethan stayed with his cousins and Wyatt and Abagail stayed with Mamaw and Papaw. Johnny finally made it home at 3 am on Sunday and slept until noon. Poor guy...I know he was exhuasted, but we sure could use the 27 hours of overtime.

Ethan woke up with a horrible headache on Sunday at his cousins but tylenol-3 did the trick, but by last night he was feeling horrible, again. Thank goodness he was home with Mom and Dad by then. He started to run a low grade fever, so the watch was on.

Right now he is suffering from a headache and running a 99 degree temp. I am hoping that he stays there...last night it got up to 100.4, but not any higher. This week we will see Dr. Bowman at the Lewisville Clinic and I will be discussing all of these issues with him. Ethan has been having headaches very frequently and is constantly missing school. I don't know what to even worry about, but I am worried....

I am off to finish that last load of laundry, put it away and hopefully get a shower some time soon...Go love those babies...
~Shannon and the gang

Thursday, February 1, 2007 8:30 PM CST

We had quite the day at the clinic/GI doctor today. Ethan started to complain of his ear hurting this morning and yes, it is red. I was worried it was going to be really infected, but they said it is merely red around the tube. We are going to start up his antibiotic ear drops again in hopes to stop any severe infection. If he continues to complain through the weekend we are going to call the ENT. The oncologists don't want to mess around with his ear with all the problems we have had, and I think it that is a good idea.

The biggest problem is that the "new" tummy problems are stemming from the massive amounts of antibiotics we have been using to keep the ear infections at bay. The GI doctor said that his ileus is clear and he is on his way to getting better. We are going to start him on some new "pro-biotics" and make sure Ethan is eating good. She told me that it could take a few months to get things back on track...I think we have heard that before! Dr. Hunt was also very concerned with Ethan's weight loss. We will now be weighing him at home every other day and if he falls below 27 kg she wants to be called. Hopefully it won't be a concern and we will just be weighing to keep up with his weight he will level off at.

So life is interesting as usual...never a boring day around here!!! Go love your babies...I am going to watch some TIVO!
~Shannon and the gang.

Wednesday, January 31, 2007 9:29 AM CST

Ethan is home from school again today. It seems as if the pain from the steroids has subsided, but the tummy issues have multiplied again. We go to the GI Doctor tomorrow, thank goodness, and hopefully she will be able to help us figure out our issues. I know she told me that the medicine that we are using to clear the ileus would eventually cause diarhea, but he is just miserable. His tummy aches continuously and he can't decide if it feels like it did before or not.

Poor kid...I just wish I could make him feel better. On a funny note (well, depends on if you have a sick twisted humor like me or not) Ethan has rubbed himself a bald spot. He came home from school yesterday and I noticed it immediately. When he is concentrating he always rubs his head, or pulls on his hair...thanks to that, he now has a bald spot. In the last week, he has lost of two-thirds of his hair and if he doesn't quit pulling on the remainder, he is going to look like he is molting.

I am off to find entertainment for the day. Looks like we might have to pull out some crafts or something....
Go love those babies
~Shannon and the gang.

Monday, January 29, 2007 9:37 AM CST

Well, the light came on this morning...Ethan is miserable because he is on dex. The steroids make his body ache. Some kids even have to take morphine to handle it. I kept him home today and am giving him tylenol to see how it helps. Tomorrow morning is his last dose so the pain should subside soon...

~Shannon

Sunday, January 28, 2007 9:37 PM CST

Ethan was doing better, but now, I'm not sure. He is feeling horrible. It all began this afternoon as he complained of bodyaches. His head is hurting, his tummy is upset...and is it awful of me to hope it is a mild case of the flu?

Poor kid, can't catch a break. He has already said he is not sure he wants to attempt school tomorrow. You all know that is not Ethan. I am hoping that he will feel better in the morning, but for some reason, I have a feeling in my stomach that he won't.

Work is crazy, the kids are still trying to adjust. About the time they get into the swing of things, tax season will be over and I will be home again. Johnny is getting ready for another week at work...nothing new there. Abagail is babbling like a wild woman. Most of the time we don't understand her, but she has lots to say! (Don't know where she got that from?) Wyatt...what is there to say about Wyatt. He is simply adorable. Lately he has become quite the charmer, full of hugs, kisses and all the things a Mommy could dream of. The only thing he is lacking for this Mommy is letting me take pictures of him...maybe soon!

I am off to check on Ethan, tuck Wyatt in a little tighter and make sure my baby girl has her covers! take time to gove love those babies...
~Shannon and the gang

Thursday, January 25, 2007 8:26 PM CST

Thank you for all the well wishes for our anniversary.

Ethan did fine at clinic this morning and was able to get his chemotherapy. His counts were fine and he handled his port access perfectly. What a lucky mom I am!

Tomorrow he heads back to school and he couldn't be more excited. I am hoping this will be the last of his "missed" school events for the year. I know he will probably have a few days that he will miss due to clinic visits...I just hope that it isn't from surgery or low counts. Those really get him down.

Tonight I am watching a movie my husband gave me for our anniversary. He knows me so well and always picks ones that I will love...

I'm off to veg infront of the TV...go love those babies...
~Shannon and the gang

Wednesday, January 24, 2007 11:02 PM CST

Nearly all marriages, even happy ones, are mistakes: in the sense that almost certainly (in a more perfect world, or even with a little more care in this very imperfect one) both partners might be found more suitable mates. But the real soul-mate is the one you are actually married to. ~J.R.R. Tolkien

9 years.

To some it may seem like a short about of time, to others it is an eternity, but to me, it has been an incredible ride. We have had our ups, and man, we have had our downs, but we have been fortunate to turn a run of the mill marriage into what we have now.

What do we have?

I'm glad you asked...

What we have here is a marriage that is based upon a friendship that has changed and grown more than we could have ever imagined over the last two years.

I am thankful everyday for the man that I have. Most of you think I am this strong woman who handles things so well, but you are SO wrong. I have a man that is always behind me to catch me when I fall. He holds me together when I am about to fall to pieces. Without him, I would be lost.

We weren't able to celebrate our anniversary with any spectacular plans. We had 5 minutes together after he came home from work and I headed out the door for my job. We might go out to dinner this weekend, but will probably have three little ones in tow. All I know is, if he is with me, I am a happy girl.

I am going to finish up this post...we leave early in the morning for the clinic. Ethan is feeling okay...not perfect...just okay. I am hoping for an uneventful day at the clinic and back home before we know it....go love those babies...
~Shannon and the gang

Tuesday, January 23, 2007 2:17 PM CST

We are home from the hospital. The doctor debated about if he should keep Ethan overnight or not, but finally settled on us going home with lots of precautions. Dr. Vories was pleased with the procedure and hoped this would do the trick for Ethan's ears. He did warn us that Ethan might just have some serious draining issues and this could be a problem again in the future. His biggest goal is to keep the infections under control and to not have to hold treatment again due to ear problems.

Ethan seems to be feeling okay. Of course, he did get lots of pain meds before leaving the hospital. We will be dispensing some more to him soon...better to catch it before it starts hurting too bad. He will be on "slow" days for the next few days and hopefully be able to get back to school by Friday for day 100 at school.

I am off to make lunch/dinner so I can eat before getting ready for work. Today is going to be an awful long day working till 10 pm tonight, but maybe I can rest tomorrow with Ethan.

I went to visit Elesha this morning and they have been receiving some good news as of lately. The tumors are shrinking and the pressure in her belly is getting resolved. There is still much need for prayers, as her liver is now starting to act up. Please continue to keep this wonderful family in your thoughts as they pray that she will be able to begin chemotherapy again. They are desperately hoping for a miracle that will enable them to bring their little girl back home to the live together as a family again. Go love those babies...

~Shannon and the gang

Sunday, January 21, 2007 8:23 PM CST

We are gearing up for the week ahead, and what a week it will be! Ethan is scheduled for his surgery on Tuesday and it couldn't be quick enough. His ear is starting to bother him again...he says that it is extremely clogged and he can barely hear out of it. I am just hoping it doesn't get infected overnight or tomorrow and we can hold out for the surgery.

The weekend was busy, but not too bad. The days are running so closely together since I have been working. I never know if it is the weekend or a weekday. No big deal, just complaining, I guess!!! :)

I am going to rest up tonight...tomorrow is a day full of laundry and housework to catch up on the days I have been working. FUN..FUN..wish me luck!

Go love those babies...
~Shannon and the gang

Wednesday, January 17, 2007 9:53 PM CST

Well...I spoke too soon. Today there was no school. Why? You ask.

SNOW DAY!

Bleh!

Poor kiddo, he was so excited to get back to school yesterday, then to be disappointed by a snow day today. Tomorrow morning he will be off to the clinic for his weekly chemotherapy and count check. He is not so happy about his daily life being interupted by medical stuff again, but he is cooperative.

So off I go to knit and try to relax from my evening of working. I hope all is well with you and yours....go love those babies...
~Shannon and the gang.

Monday, January 15, 2007 9:53 PM CST

The last few days have been a blur with the craziness of everyone being at home. The ice storm that was supposed to come was really not that big of deal. The temperature thankfully stayed at 33 degrees through most of the rain and didn't drop until after most of it dried. We really dodged the bullet this time. I worry more about our friends in south Texas who are getting the brunt of a storm tonight.

Ethan still seems to be feeling better and is extremely excited about going to school tomorrow. He tackled his homework with a vengence tonight and was so excited to know he only has two pages of homework left. Not to shabby for a kid who missed eight days of school.

Everyone else is trying to get ready for the rest of the week. We were lucky enough to have Daddy home for an extra day this weekend, due to Martin Luther King, Jr. day and the boys loved it. I am also betting Daddy is ready to go back to work tomorrow to get away from the zoo we call home and get a break. There is never a dull (or silent) moment in this house, but I wouldn't trade it for the world.

Go love those babies...and keep Elesha in your prayers, they are at a point where things are changing constantly ann PICU is full of difficulties, emotionally and physically.
~Shannon and the gang

Thursday, January 11, 2007 9:46 PM CST

Ethan's counts are still not high enough for him to make it back to school this week. There were many obvious signs that his counts are coming up and he has been released to return on Tuesday of next week. Ethan was so excited to hear this news, unfortunately he was not thrilled about waiting a few more days, but at least he knows he will get to go back soon.

Tomorrow we head to Hurst for a followup appointment with his orthepedic doctor and I'm just positive that he will pass with flying colors. It is merely an appointment so Dr. Gray can keep up with Ethan as he progresses through his therapy.

Abagail is starting to talk our ears off. Most of the time we don't understand exactly what she is saying, but man...I can tell you it is important. Wyatt is still perfecting his music star skills while contemplating on how he will stay on a bull for a full 8 seconds. Our babies are growing up so fast and we are doing our best to enjoy it.

I better get going...I need to re-energize for the day ahead of me tomorrow...go love those babies...
~Shannon and the gang.

Tuesday, January 9, 2007 5:52 PM CST

Today day has been terribly long. The kids are showing each other their "love" through screaming, slapping, shoving, pinching...need I go on? Then within moments of that...they are cuddled together on the chair watching their favorite shows or reading a book. Bleh...too much action for me.

Ethan seems to be feeling fine, which makes matters even worse. He is BORED, wanting nothing more than to go to school. This causes him to want to spend time alone in his room away from his brother and sister...which makes them sit in the hallway and try to see under his door. He'll come out of his room and the whole senerio plays out again...fun, fun...wish you could join me :)

I did have time today to get out my camera and play around a little. I am getting brave enough to venture out of the auto modes and go "manual." Today I was just tickled when I got these pictures of Wyatt. He is the most difficult child we have to photograph because he is the most independent. He is very vocal about his opinions and wants. He already knows what he is going to be when he grows up (a bull rider/country music singer) and is definately our ladies man. He never seems to amaze me with the things that come out of his mouth.

So enjoy...these are the new "cover" photos for his soon to be released country music album...

Sunday, January 7, 2007 7:28 PM CST

It's Sunday evening and we are all getting ready for the week ahead. This week will probably be a rather long one since Ethan is under "house arrest" aka...neutropenic. We are being extremely cautious about Ethan's counts and he is not happy about it.

It irritates him that he can't go to school. He misses his friends. He wants so badly to be back to normal. I can sense he is feeling a little better, but his tummy still bothers him every now and then. Hopefully his counts will be up by Thursday so he can get restarted on his chemotherapy.

I can always tell when he is off of his chemo becasue he tends to have a little more energy. Sometimes it is hard for me to get back to things because he is so much like his old self by the time he is ready to start again, but this time I have a feeling he will not be even close.

My best friend was shocked today when we were talking about how much weight Ethan has lost. It is crazy to me. I see him not being able to wear pants we bought him in the fall. The very same pants we searched all over for because we couldn't find anything he could button over his belly. All of his clothes are so big on him. Poor little guy, he gets so frusterated with his clothes. He just doesn't understand that it is because he has lost the weight.

Things are crazy around here...I thought I would have time to update, but I should have known better..the kids were still awake....so go love your babies...I am going to love mine and send them to bed...
~Shannon and the gang.

Friday, January 5, 2007 9:02 PM CST

Sorry to leave you guys on hold. Today was a whirlwind. The GI doctor made it in to check out Ethan and give us the results of the xrays. Afterwards, she told us we would be able to go home because the medications he is on to solve his issues don't need constant hospitalization.

:Warning: There will be entirely too much gross information ahead, but if you want to know what is up...this is it.

It seems as though the true issue is that he has a major blockage of hard stool and for "no-telling-how-long" all his diahrea problems have been because his stool has been going around it. There are many thoughts as to what caused the original blockage, but most likely it is a side effect from the chemotherapy. One of the nasty meds he gets gives the kiddos horrible constipation and that might have happened and he didn't reallize it. Then since he continued to have bowel movements, though irregular to the normal person, he didn't know anything was wrong.

So his xray this morning looked a tad bit better, but the blockage is still there. They will start him on some medications and we will be observed constantly by the doctors. He started to have promising bowels sounds after fasting for 24 hours. He didn't have the tummy problems again overnight and all of these things are very positive.

We have cancelled his ear surgery/removal of adenoids because his counts are horrible. He will not be able to go to school until he is seen by the doctors again on Thursday. I am worried he is going to get another ear infection, but the doctors have assured me that he had some extremely strong IV antibiotics that should cover him for a while. I have no idea when we might be doing the surgery, I have to call on Monday to speak with the ENT.

Crazy, Crazy times around here. I am home in time to go to work in the morning, which is great. The kiddos are all in their own beds and my family is together again in our little nest. For that we are thankful.

Go love those babies...I am going to SLEEP (without beeps)!
~Shannon and the gang

Please remember to pray for Elesha, the news they are getting continues to be bad. My heart is broken with the thoughts of the reality that might soon be upon us. I am not ready to deal with the emotions this bringing up in me, but I have a comfort in knowing her mother is seems to be carrying some incredible strength straight from God. They are incredible family who in their times of trouble have always taken the time to check on my family. My hearts is broken...I am very angry at cancer tonight.

Thursday, January 4, 2007 6:41 PM CST

We know absolutely no more today than we knew yesterday. Ethan's pain seems to have subsided since he wasn't eating, so the doctor gave the go-ahead to expand his eating to the full diet. I fear that he will be in pain tonight, but we will see. I hope I am wrong, boy, do I want to be wrong.

The GI doctor did not make it by today...don't ask, you don't want my opinion...it's not nice! She will be by first thing in the morning (we'll see about that). More xrays have been ordered for in the morning so we will see what has come of his tummy. I am ready to get a plan of action, or at least an explaination of what to expect in the future.

We will see what tomorrow brings. I am not a person who waits well when it comes to these issues.

I am going to relax and do nothing for the rest of the evening. Go love those babies..
~Shannon and the gang

Wednesday, January 3, 2007 8:12 PM CST

Back to your regular rambling on updates by Shannon!!!

We have settled into our room and Daddy is heading home. We are pretty much in a holding pattern until tomorrow morning. Tonight will basically be more pain management and fluids until we can be seen by our GI doctor tomorrow.

I am not sure exactly what is going on. The way the ER doctor explained it is that his stomach has basically gone into a holding pattern and is not working properly. Thus causing a backup (funny, huh, especially since we have been dealing with so much diahrea, now he is backed up...) and is also causing the severe acute pain to his abdomen.

He was given morphine in the ER, and has yet to require any further medications, but I have a feeling that is coming very soon. I can sense him getting rather testy and that happens when he starts to hurt.

Tomorrow will probably be a day full of tests, but no one knows until we get there. Tonight I am going to snuggle up with my boy and give him lots of love. We are going to watch a movie and try to get some sleep.

Johnny and I have been getting rather down with all that is going and wish so badly that our little boy could catch a break. We have been told several times today that we are handling this well. Don't believe that for a second. We are a mess, but thank goodness we have each other to share the mess with. I don't know how I could handle this without him. Each day we both just get up and do what has to be done...nothing extraordanary, just the same thing any other parent in the same situation would do.

We have been blessed to have John's parents around. His mother dropped all she was doing to come get the babies so that we could come to the hospital together today. Thank you Kathy...we don't know what we would do without you.

Thank you, Uncle Ralph, for taking Johnny home tonight, you always go above and beyond...

Kirsty...there are no words...but you know!

Go love those babies tonight...hold them tight, kiss them softly...REALLY...go love them a little more!!!
~Shannon and the gang

PS..Please while you say your prayers, include the little girl next door to us. She was diagnosed with neuroblastoma about the same time as Ethan was with his ALL. Over the holidays it was discovered that her cancer has returned. Her tummy is full of tumors and they need a miracle to get the chemotherapy to do it's job. Her mother has been an incredible inspiration to me, as far as becoming the woman I would like to be, and also a dear friend. My heart and prayers have been with them over the last week, and I hope you will do the same. I will ask her mother for permission tonight (since I know we will probably meet out in the hall later) to post her website so you can see this amazing little girl. She is darling...absolutely precious..of course, I am biased, since I am usually lucky enough to get big teddy bear hugs from her...but trust me...TRUE BEAUTY!

Wednesday, January 3, 2007 3:44 PM CST

This is Kirsty filling in for Shannon this afternoon. There are a lot of you out there who know something is up and Shannon wanted me to post and let you all know what is going on.

Poor Ethan has spent quite a bit of the day at the ER and they have determined that he has some kind of obstruction (ileus) in his intestines and his tummy has pretty much stopped working. They will be going inpatient and possibly placing an NG tube sometime. Keep them in your thoughts...Ethan has been miserable and they gave him morphine to calm his pain (and him) down. Shannon will hopefully be on sometime later to fill you all in and give you a little more info.

Shannon...I hope I got most of the details right! Hugs to you all! We love you!

Wednesday, January 3, 2007 2:29 AM CST

Here we all sit wide awake at 2 am. Ethan is still feeling horrible and I have decided it is time to call the clinic. I was trying to hold out until Thursday, but he is just miserable and probably needs to be seen today.

Johnny is determined it is the antibiotic he is on, I on the other hand just don't know. I wanted to believe it was just a combination of all the antibiotics he has been on over the last six weeks, but now I'm not sure. I just can't see how he can be so miserable over that.

His diahrea is back in full force and I am having to force lots of fluids to keep him from getting dehydrated. His face is pale and I haven't seen him smile in a few days. He complains his entire body is sore and his head has started to hurt.

My plans are to call the clinic first thing (which is about 8:30 am, unless I convince the "answering service" to transfer me to the nursing station earlier). I don't know if they will want to see him, but I imagine they will. I would assume we will be in for some fluids and maybe even an admission. I will try to keep you informed.

Thanks for checking in on us...
~Shannon and the gang

Monday, January 1, 2007 7:06 PM CST

I hope everyone is having a happy new year. Our day has been really mellow. Ethan is feeling down-right horrible. His tummy is so upset from the side effects from all of the antibiotics he has been on over the last six weeks. Now for some reason his throat is hurting him really badly. I can't imagine how he could be possibly have a bacterial infection with all these antibiotics. Bleh...I am so tired of Ethan being sick, I can't even imagine how he feels about it. Poor little guy...I just wish I could do something to make him feel better.

Not really sure what the week is going to play out for us. I can tell you he won't be going back to school most likely. He has been making regular trips to the potty all day and I know it probably won't get any better until after we can finish all these antiobiotics.

I am off to finish some laundry...go love those babies.
~Shannon and the gang

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