History

Thursday, December 21, 2006 4:24 PM CST

It's hard to believe it's almost Christmas! And, it's even harder to believe that this time 3 years ago Noah was in Marionjoy Rehabilitation working on regaining all his faculties. When I think about then, it kills me. This time 3 years ago he was not walking, talking, even standing up on his own! How far he's come is nothing short of a miracle! That Christmas Eve, 2003 is when he finally 'found his voice' and the first thing he said was 'Momma' - what a gift that was! I know there are times when we'd like our kids to lose their voices, but to not hear even a peep for a month - was heartbreaking! Him saying 'Momma' on Christmas Eve is, to date, my favorite Christmas memory.

Now, 3 years later - Noah just passed his test for his yellow belt in KARATE!! Can you believe it?? Who would have thought? He's been wanting to do Karate, but we've always had to say no. Unfortunately, many, many sports are forbidden for him. But, it's hard to constantly say no to him. He's a boy, and he wants to do boy stuff. So, against medical advice, I found him a Karate class that meets in the church where he went to Preschool. Only 2 blocks away, and only $6/week - perfect! I did talk with the Sensei before enrolling him, telling him what we were dealing with, but he assured me there was NO CONTACT what-so-ever. So, since it's a week to week program, we gave it a shot. It's been great for his confidence and he's been trying so hard! He does have to work harder than the other kids because his balance is still off and his right side has not fully recovered in strength. So, some of the kicks are near impossible for him to do without falling or losing his balance, but he just keeps trying. And, to his credit - he now holds a Yellow belt ranking! He doesn't get the actual yellow belt until Jan. 2nd, but he's still excited!

He's doing great, still carries a clean, cancer-free, bill of health. His next MRI is scheduled for February. We're still on a 4 month schedule, but we may be able to push back to 6 months next year. He's got just one more shot to get this month and then he'll be completely caught on up being re-immunized.

We went to the dentist a couple weeks ago and he sustained quite a bit of damage from the chemo and, possibly, the near year of vomiting. They can tell the damage is caused by that because it's not 'normal kid wear and tear'. There is discoloration and some of the teeth are broken down consistent with the treatment he had. This can all be fixed, but it will require some work. The worst thing about it is that we won't know if there was any damage done to the permanent teeth until they start coming in. It's not unheard of for them to also be damaged due to the treatment, and there have been cases where the teeth just stopped growing. Hopefully that won't be the case, but time will tell. If that happened, he'd have to have implants whereever a tooth failed to grow in completely. Not the best case, but at least it's repairable. It still amazes me how much 'aftermath' there still is.

We just had another hearing test and nothing has changed. But, he did get to order new ear molds and went with a blue & orange swirl this time - Chicago Bear colors! That ought to be real popular here in Chiefs country! :)

We wish you all a blessed and safe Christmas and a very happy and prosperous New Year!

God Bless,
Cindy

Friday, October 20, 2006 9:39 AM CDT

GREAT NEWS!!

We went on Friday for Noah's MRI. It was head only so he was able to make it through without sedation, which he was thrilled about. They have a contraption that they strap around your head that looks like goggles and it allows you to watch a movie during the MRI. Only the patient can see and hear it. It definately helps pass the time and, he thinks it's pretty cool, so he looks forward to when he can use this. This is only an option for him when it's head only. Head and spine still requires full sedation.

MRI was CLEAR!!

Monday we went to the eye doctor because there is still some concern about one of this eyes appearing to turn in. Well, after a full examination, this doctor said the same thing that the one at last years exam said - his eyes are perfect. It's just the way he looks! Something about the way his bridge is can sometimes give the impression his eye turns in. But, it really doesn't. So, since we've had two different doctors conclude the same thing...we don't have to go back to the eye doctor for 2 years.

More good news...I spoke with Noah's school Physical Therapist this week and we're in agreement that he isn't gaining any benefit from their sessions so we're going to discontinue them. Both she and his P.E. teacher feel that he is not that far off from most of the Kindergarteners and, in some cases, he does better than others. He is pulled out of class to attend these sessions so it seemed to be giving him more of a feeling that either he was 'different' from the other kids or he was 'bad'. We've tried very hard to keep him from feeling different and we'd never want to make him feel that he was bad...so we're all in agreement that it's time to just let him "GO" with the rest of the kids. We will still work on some of the exercises here at home, so he won't completely be stopping. But, he's used to that here so it's 'normal'. Well, as 'normal' as our house ever is. :)

The only area of concern he has is that he's 'sad a lot'. At least that's what he tells me. You may, or may not, know that my Grandmother died a few months ago. It's been especially hard on Noah. He was very close to his 'Grape-Grandma' and still tells me almost daily how much he misses her. A lot of times when he brings it up he still cries. Sometimes he just starts crying for no reason and when I ask him what's wrong he tells me that he misses his 'Grape-Grandma'. It's been a definate period of adjustment for him. He seems to still realize, one thing at a time, what he won't be able to do with her anymore. For instance, he realized that he wouldn't be able to play dominioes with her anymore almost right away. Then, a few days later, he realized he wouldn't be able to play cards with her anymore. Then, even longer after that he realized he wouldn't be getting anymore mail from her. When he got his school picture, he was sad because he couldn't send her one. And, just this morning he realized she wouldn't be able to see he would be Batman for Halloween. He has a picture of he and 'Grape-Grandma' and he will show it to Justice Rose and tell her that she didn't know her very well but it's going to be HIS JOB to tell her all about her. It's definately been hard on him which, in turn, also makes it that much harder on me. I guess this is just how someone his age processes their first death of someone very close. He's such a sweet boy and he's VERY sensitive to these sort of things.

Monday, October 23rd, we have an appointment with the Oncologist for a routine checkup.

We're all happy and well and we pray the same for you. Thanks for checking in.

God Bless,
Cindy

Friday, September 29, 2006 1:46 PM CDT

Well, after receiving more than a bit of grief lately...I'm updating. I guess I didn't think that anyone was still checking here, but apparently I'm wrong. So, for those of you that are still checking, I apologize for not updating more frequently.

But, in my defense, I hope you can all understand that this website tends to hold a bit of mixed emotions for me and staying away has meant that things are great. But, from YOUR point of view, I suppose my lack of updates have left you sometimes wondering if everything is going well.

Noah is doing GREAT! We did have a bit of a scare in June when he started presenting symptoms that couldn't be explained. He was waking with headaches, wetting quite often and his personality was more than a bit 'off'. The MRI didn't show anything abnormal and it was thought that perhaps he had a virus that settled in for more than the 'normal' amount of time and this is just how the virus was manifesting. One day all the symptoms just left and, Thank God, he's been symptom and problem free since.

Noah just turned 6 on September 12th. He celebrated his 3rd Annual Noahpallooza (the name he gave his birthday / celebration of life party after FINALLY returning home from the hospital/treatment/rehab/recovery) with a Pirate themed party.

He is enjoying Kindergarten and is progressing well. It took a while to adjust to getting up early and being in school all day, but now he's happy. We have special permission for him to arrive just as the bell is ringing so that he heads to class alone. When school first started he would have a meltdown every morning when we got to school. I finally figured out that he was being overwhelmed with all the kids in the hall at once. His is still slightly slower than the other kids and the noise level was disturbing to him. So, now we get there late enough that he makes the journey to his classroom via empty halls and he's happy now.

He still 'mirror writes' (meaning, if you held is words up to a mirror, they'd be perfect) but he's starting to write correctly sometimes too. He is still receiving physical therapy at school but the therapist feels that he is not that far off target from where most kids his age are. So, there has been incredible progress there.

He knows no fear anymore. He climbs, runs, jumps with the best of them. He is still lacking a bit of endurance, but it's amazing how far he's come! His balance is still a bit off, especially so when he's tired or not feeling well. But, it's not really even noticeable to 'outsiders'. He rides his Big Wheel like it's the Indy 500, but he still has trouble with his bike. He's been working on it and he's getting stronger, but it's been a struggle.

He loves to draw and color. So much so that it's become his greatest passion. When people asked him what he wanted for his birthday he said 'new coloring books'. He draws constantly and almost always has some sort of paper or notebook he's carrying around to capture the latest creation. He's getting very good at it. Although, lately he's become quite the perfectionist so if things aren't coming out on paper the way he invisioned them he becomes quite frustrated!

He loves being a big brother. Both Noah and Justice Rose light up equally when they see each other. Justice Rose just turned one on August 17th. She is walking now and climbing like a monkey! She has 12 teeth and is eating like a little lumberjack. She is, according to the doctors, small - measuring only 25% on the charts, but she's perfectly healthy. She can't say Noah yet but when she wants him or he walks away she screams "AH!" so that you definately know what she's saying. She loves dogs and is obsessed with Elmo, or 'Eldo' as she calls him.

Noah's next MRI is scheduled for Friday, October 13th and he has an eye dr appointment that following Monday. There are still some concerns about one of his eyes turning in slightly, so they just keep an eye on it. He's almost caught up with his reimmunizations. That whole process has been less than pleasant for him. But, I think he gets 3 more in December and then he's back to 'normal' as far as that goes.

Thanksgiving will mark the 3 year anniversary of the start of this journey. In some ways it's hard to believe it's gone so fast and in other ways it seems much longer than 3 years. To see his progress from then to know though, is amazing. We try not to look back but to keep looking forward.

I can't promise that I will update weekly, or even monthly, but I promise I will make every effort to update more regularly. Thanks for keeping Noah in your thoughts and prayers. We appreciate your checking on him.

God Bless,
Cindy

Friday, September 29, 2006 1:46 PM CDT

Monday, December 25, 2005 11:31 AM CST

MERRY CHRISTMAS! As I'm sure you've noticed, there haven't been any updates lately. And, trust me, that's GREAT news! Noah is doing great. He loves school and is meeting or exceeding all the goals they've set for him in the Deaf/Hard of Hearing program. He is also showing great improvement from the Physical Therapy he's getting at school. It's only 1 day a week, but we definately see the progress. To see him now and realize where we were just 2 years ago at this time, is nothing short of a miracle. Thank you all for being there with us and for us. We definately couldn't have made it this far without you all.

His next MRI will be mid January. I'll update after that.

God Bless & Have a Very Merry Christmas!

Monday, December 25, 2005 11:31 AM CST

Monday, September 12, 2005 8:48 AM CDT

HAPPY 5TH BIRTHDAY, NOAH!!

Hard to believe he's 5 already. Yet, on the other hand, he's been through so much sometimes it's hard to believe he's ONLY 5!

His pre-school starts today. He was very excited about it until this morning when he came to me crying that he was scared of school and didn't know how to do homework. I think the fears have been calmed enough, hopefully all will go well. Since it is his birthday, he gets to bring the snack for the day and it's his day for Show and Tell. He still hasn't decided what he's going to bring. He seems to have narrowed it down to either his bongos or his Relay for Life medal.

After having him evaluated through the school district, they decided that he would benefit from some special services and will attend a second pre-school on Wednesday and Thursday. There he will be in the Deaf/Hard of Hearing class and will receive assistance with attending skills (learning to look at the person who is talking to you, how to orient himself for optimal hearing, etc). He'll also get some much needed physical therapy. For this school, he gets to ride the bus. When I asked him if he wanted to ride the bus, he questioned whether they would know where he had to go and once assured, he was very excited about it. We'll see how that goes on Wednesday.

All of his tests last week went great, everything is still clear. We were concerned they wouldn't be able to do the MRI because he was so congested. We ended up taking him to the pediatrician the Sunday before because he was holding on to this nagging cough for weeks and it was getting pretty bad. Turned out that he needed to go on breathing treatments again because his chest was so tight. He hasn't needed any of those in at least 2 years. They said it was from his allergies. It appears they weren't under control and all of the draining settled in his chest. They gave him a different allergy medication so hopefully he'll do better.

They only concern the doctors at Children's had were with the fact that he's been falling down and has been more unsteady lately. They couldn't find any reason for it on the scan, but just told us to keep an eye on him and let them know if it continues or gets worse. Even this far out from surgery, it's not uncommon to develop hydrocephilus (sp?) which would cause the symptoms he's having. That's what actually brought the tumor to light in the first place. We're not seeing any of the other symptoms right now and his scan was clear, so it's not as concerning. We'll just have to keep an eye on things.

All of his doctors have agreed to transfer his care here to Children's Mercy in Kansas. It will be more convenient but I'm still a bit reluctant to leave the comfort of doctors and a hospital that knows him so well. He'll have to have another MRI at the end of the year and then we'll be able to move to an every 4 month schedule. It's not much, but it means 1 less MRI every year so we'll take it!

Noah is still loving being a big brother and is very protective and very attentive. If the baby starts to fuss (which very rarely happens), he'll tell her 'it's going to be all right, baby'. It's so cute.

Anyway, better run, I have to be sure I've got everything together for school today. I just remembered we didn't put all of the goodies into the goodie bags!

God Bless,
Cindy

Saturday, August 20, 2005 7:38 PM CDT

She's here!

Justice Rose Sanchez, born Wed. 8/17 at 12:35pm, 7lbs 13.6oz, 20 in.

Following the delivery, 'Baby J' was rushed off to the NICU because her color was very greyish blue and she was struggling to breathe. It was determined that she had a pneumo-thorax (aka pulminary embolism) which meant that when she drew her first breath, she did so with such force that she popped some air sacs in her chest. They felt that it may be necessary to put a chest tube in to relieve the air. However, within hours, her color got better and she started having an easier time. She was kept in the NICU in 100xygen. We were originally told she would have to stay in the NICU for 'at least' 48 hours because the condition could change very rapidly. They said that she would not be weighed, bathed or fed during that time. Another x-ray was done Wed evening and showed marked improvement. She created such a fuss in the NICU during the night that they inserted a feeding tube so they could feed her a little bit.

Thursday morning when the pediatrician came in to update me, he indicated that the xray they did early that morning showed it was 95one and 'you'd have to look very hard to even know it was there'. Based on her condition after the delivery, he called it a miracle. She continued to improve and was slowly weaned off the oxygen. By 8:00pm Thursday night she was completely out of the oxygen hood and was holding her own. Shortly after 9:00pm I got to hold her for the first time!! Later that evening they started bottle feeding her and during the night both her feeding tube and IV were removed.

When the pediatrician came in to report on Friday morning, he told me that she wouldn't be able to come home with me, that she would need to stay until Saturday morning. The reason for this was that they wanted her completely free of the oxygen for at least 24 hours before they would consider letting her leave the NICU. And, she was now showing signs of jaundice. Barely 2 hours later, she was wheeled into my room and was allowed to stay with me for the entire day. At the same time, they said they decided that she was doing so well that they were going to let her go home afterall. They made her stay until 6:00pm, but shortly after that - we all got to go home together. Thank God for answered prayer.

She is doing great and Noah is loving being a big brother!

Noah is also doing great. His next MRI is scheduled for September 7th. The same day he'll see the Neurosurgeon and Neurologist for followups.

September 12th (Noah's 5th birthday) he'll start pre-school! It seems so hard to believe. He's pretty excited. Especially because it will be his birthday and he can bring 'goodie bags' to his school.

I'll update again after his appointments.

God Bless,
Cindy

Saturday, June 18, 2005 3:13 PM CDT

Well, the long week of appointments is over and, I'm thrilled to report, everything looks great!

We started out the week Tuesday with the Echo-cardiogram which was normal. We then went to the pediatrician for his pre-school physical. Everything was wonderful there as well. It was nice to go to a 'normal' doctor and have a 'normal' checkup. It was definitely a welcome change. Noah is now up to 47 pounds and is 43.5 inches tall. In the last week I have heard so many people at the hospital say 'he's gotten so tall!'. Well, since when we started all of this he was only 38 inches tall, that means he's grown almost 6 inches, so I guess they are right. It's amazing to think of all the toxins they filled his body with yet he managed to thrive despite it all.

On Wednesday he had his MRI of the head/brain only, which was CLEAR. Then he saw his Neurosurgeon and his Oncologist. Both were impressed with his progress but both were slightly concerned with his right eye appearing to turn in again. We're going to need to see an Opthalmologist in the next few weeks about that. There doesn't appear to be any new reason for it, so why it's starting again, they aren't clear. They've also recommended that he be re-evaluated for further speech and physical therapies. They feel that now that his balance has improved, they may be able to help him more with returning to a more 'normal' gait. His Neurosurgeon wants to continue to follow him at Children's while his Oncologist was comfortable passing him off to a new doctor here in Kansas. We'll go back in September for his next MRI. His next MRI will be full head and spine. We have a few more 3 month visits and then we'll make the 'leap' to every 4 months.

Thursday we went for his (almost) 1 year post stem cell transplant visit. They filled 9 vials of blood for all the testing they did. While some of the testing we have to wait for, his blood counts looked NORMAL. Not 'Noah-normal', not our 'new-normal', but NORMAL as in just like every one elses. His counts are so normal now that the doctor said she wouldn't be able to tell Noah's counts from any other well child's. It was incredible to hear that. For so long you hear that they are 'normal' for the stage he's at, but not truly normal. What a great change! They've tested his immune system again so we'll learn if he's ready to start his immunizations over again. There is a slight chance that some of them remained and he may not need ALL of them again, but he will need most of them. We should find that out next week. Then, if he's ready, that means in the new few weeks he'll have to get to the pediatrician for the beginning shots. Then, he'll have to get blood work again after those to be sure that they 'took'. Then, if they take, 2 months after the first set of shots he'll have to get the next ones. The best thing about this visit to the Stem Cell Unit was that this is his LAST visit to the Stem Cell Unit. A major milestone, indeed! He will now be followed by the STAR program which monitors survivors and any long term or delayed effects.

The last appointment of the week was with the Audiologist, Thursday afternoon. As I suspected, his hearing has noticeably decreased. I could tell that he wasn't hearing as well, even with his hearing aids. This may be caused by some waxy buildup that he has around the tubes. His hearing aids were adjusted to accommodate for the loss and he now appears to be hearing much better. One of his hearing aids needed repair so we'll have to make a trip back to return the loaner. At that time, they will test his hearing again to see if there have been any changes. The test went on for nearly 2 hours so when it got to a certain point, it was really hard to tell what he could and couldn't hear and what was just plain fatigue and boredom. He'll need to get new ear molds soon as well due to growth (that's the part that actually sits inside the ear). He's already decided that he's going to go with the camouflage again. (No surprise there).

So, the bottom line, Noah is doing wonderful. We know that there have been many prayers said on behalf of this child and we are thankful and grateful for each one. It is obvious that they have been heard and answered. The road ahead is still long, but he's come so far already. Please continue to keep Noah in your thoughts and prayers. We thank God for each and every one of you that has been there during any part of this journey. We know that we are truly blessed to have so many people interceding on Noah's behalf. Like many of you have expressed, there is something very special about this little boy and we, too, feel that he is destined for great things. He is a walking, talking example of God's grace, mercy and healing. He has touched so many lives, both "b.c" and "a.d". (Before Cancer and After Diagnosis - as Lance Armstrong puts it).

It has been amazing for me to watch how one little boy can move so many people. He has a Veggie Tales shirt with Junior Asparagus on a skateboard that says 'Little Guys can do big things too'. He had that shirt 'b.c.' but it's never held more meaning for me than it does now. To see tiny little children face such obstacles with such strength and bravery is beyond amazing, beyond encouraging, almost beyond words. These little ones are champions. They are truly heroes. There is so much that we can all learn from them. They have a never ending spirit of determination, strength, courage and hope. It never occurs to them to stop and feel sorry for themselves. To say 'I can't'. They want to and they figure out how THEY CAN and they do it. When Noah couldn't stand or walk, he found ways around it. If he wanted something on the other side of the room, he would lay himself on the ground and drag himself over to it. Not a second thought. Wanted it, figured it how to get it and got it done. They feel the pain, and they feel angry at the person who caused it (being via blood draw or other procedure) but they feel it, they deal with it and they let it go. They don't hold on to it. They don't feel wronged or hold it against anyone. They get scared, but that too they deal with and get over. They don't worry about what might be or what could be. True, some of that is that they don't KNOW what might be or what could be. But, since none of us can change what 'might' happen or what 'could' happen, wouldn't it be great to not worry about that as well? Wouldn't it be great if we could all approach everyday life with such childlike innocence? If we could all always look for the good in people, not expecting bad? If we could try to just enjoy life, without worrying about all the little things that, in the grand scheme of things, really don't make a difference anyway? Instead of asking why God lets these things happen to the little ones, look at how God uses the little ones through it all. If we're willing to learn, they have so much to teach us. While the experience I could have lived without, I thank God for my little life coach every day.

God Bless.

Monday, June 6, 2005 11:13 PM CDT

Wow, it has been a long time since I updated! And, as always, no news is good news.

As some of you know, Noah and I moved to Shawnee, Kansas at the end of April. Alex is still working in IL so he stays there during the week and commutes here after work on Friday and then back late Sunday afternoon. Needless to say, he's not enjoying that. Hopefully his job situation will change soon.

We're getting settled - slowly. Noah has adjusted quite well and is very happy in his new house. However, he has boycotted sleeping in his bed and now will only sleep in his sleeping bag on the floor. And, which floor seems to change each night as well. Whatever works to get him to sleep. Man, if I could only harness some of that energy!

I am 30 weeks pregnant now and boy do I feel like it. In some ways it seems to have gone so fast. I suppose that's because so much as been going on. But, in other ways, it seems to be taking forever. Did I mention it's HOT here in Kansas??

Noah and I drove up to Chicago this weekend to attend the Cancer Survivor's Celebration and Walk in Grant Park. It was a 4 mile walk and, I admit, I wasn't moving too quickly at times but I managed to make it the entire 4 miles! A few weeks ago they had taken Noah's picture for a photo project called 'Faces of Cancer'. The pictures of those they photographed were posted along the walk route. They were 3 feet by 5 feet banners. There were many, many mixed emotions when I was faced with Noah's. It was the very last picture at the end of the route (perhaps they saved the best for last?). It was a very cute picture of him (objectively speaking, of course) but above his picture it said 'Noah Sanchez, 1 1/2 year Brain Cancer Survivor'. Hence the mixed emotions. It's like going to the walk and putting a purple shirt on him. We're thankful that he's here to wear a purple shirt (designating him as a survivor) but on the other hand sometimes it's still hard to believe all he's been through. But, seeing the sea of purple shirts that gather together at that walk brings hope.

Colleen, from Alex's work, gave Noah a medal from the Relay for Life that says 'SURVIVOR' and is on a purple ribbon. He wore that medal all weekend. It makes him feel SO special. It's really cute. Of course, Noah feels that all of these things were made specially for him. Every time he sees anyone wearing a yellow Lance Armstrong LiveStrong bracelet he gets so excited. Again, thinking they are wearing it specifically for him. Who's going to argue with him?

And, as if the medal and the walk weren't enough this weekend, we also saw Noah on TV. We were visiting my Grandma (or 'Grape' Grandma as Noah calls her) when the weather turned very dark and windy. So, I flipped on the TV to see if there were any weather warnings. What I found was a special on Children's Memorial. We watched for awhile and during a segment on Hyundai being a corporate sponsor of Children's - there was Noah! Maybe you remember a few months back when I mentioned that Noah and I had gone downtown for a Hyundai Hope on Wheels lunch and then Noah (and 3 or 4 other children) put their hands in paint and put their hand print on the car. I believe that Hyundai also presented a check, which is what they showed Noah holding. He was SO excited to see himself on TV. All in all, it was a great weekend for Noah.

This Sunday, June 12th, (my 40th birthday, by the way)we'll be going to the Ride for Kids here in Kansas City. I'll have the same mixed emotions that day as well. He'll sport a Ride for Kids 'STAR' shirt and it will hit me all over again. For those of you who may not know, the Ride for Kids is a motorcycle event that raises money for the Pediatric Brain Tumor Foundation. All kids that attend that have had a pediatric brain tumor are 'STARS' and get to go on stage. All of these things are always a big deal for Noah and it makes him feel like such a hero. Which, of course, he is.

On Monday, June 13th, Noah and I will make to trek back to Chicago for all of his doctor's appointments. He's going to get a physical for pre-school, visit the audiologist for a hearing test & hearing aid check, he'll have an MRI and a checkup with the Neurosurgeon, Lab draws and a checkup with his Oncologist and he'll have his 1 year post stem cell transplant checkup and echo-cardiogram. It will definately be a busy week, but at least we'll get it all done in one trip. We're going to stay at the Kohl's House right across from the hospital so that will make many of the visits much more convenient.

I get very anxious around checkup time. I just pray that they find he's doing as well on the inside as he appears to be doing on the outside.

He is working very hard on his 'extra-cising' trying to get stronger and build up his stamina. His balance is still noticeably off when he runs, but he continues to make progress and we're very thankful for it. It's not clear if he'll ever have it back entirely but he's adjusting accordingly. He still falls down from time to time but he just says 'oops' and gets right back up again. Thank God for that determined spirit of his.

You've waited all this time for a new update and now you find yourself wondering if it will ever end, right? Sorry. :) I will post another update after all of his testing. Please send up a prayer on his behalf. Obviously the hand of God has been on this little warrior this long, let's pray that it continues!

Thanks for checking in. God Bless!

Wednesday, April 6, 2005 10:13 AM CDT

I know it's been awhile since my last update but, I'm happy to report that all remains well.

Noah had an appointment with his Onocologist on the 23rd and everything was great. He'll go back in June for another MRI and a check up with the Neurosurgeon and the Oncolgoist.

Last Friday we went to see his Allergist. There was a possibility that when they wiped out his immune system for the Stem Cell Transplant that it may have wiped out all of his allergies as well. However, the allergist says that since he got his own cells back, the allergies came back as well. In fact, he now has more than he started with! He's allergic to milk, eggs, peanuts, oranges, cats, dogs, trees, ragweed, weeds and dust mites. The allergist was actually going to test him further to narrow the types of trees and weeds down, but figured he'd put him through enough with the testing. Noah doesn't complain much but he didn't like the prick testing on his back one bit and was very uncomfortable during the process. The 15 minutes he had to wait 'took forever' he said. So we're back to watching what he eats and giving him allergy medication daily. In the grand scheme of things it's certainly not a big deal but we were hoping that no allergies would have been a 'perk' he got out of this entire process.

Remember that on Noah's Make-A-Wish trip he got to see Fear Factor being taped and met Joe Rogan? Recently we received 2 8x10's of photos they had taken during the meeting personally autographed to Noah by Joe Rogan. Noah couldn't have been more excited. We're going to have them framed and hang them in his room. Still, to this day, every time Noah watches Fear Factor he says 'that's my buddy Joe Rogan'. Meeting Joe Rogan and Spiderman were definately the highlights of his trip. And, now that he understands there is Disney Land in California, he's making plans to go there with his big cousin Cory.

Noah's nurse will be here soon to flush his port, so I'd better get running. Thankfully, this is the last time she'll have to come. Once that port is out there is no need for home nurses. We're very grateful to have had such an awesome nurse and we'll miss seeing her but we're happy to have it coming out.

Take care & God Bless.

Thursday, March 17, 2005 2:41 PM CST

Noah's appointment with the ENT went well. He doesn't have any damage to the ear drum, it just appears that the tubes are starting to work their way out and that may be the cause of the bleeding. He'll see the ENT again in May and, by then, the tubes may be out.

Noah had his MRI yesterday. I'm thrilled to report that ALL IS CLEAR!! He'll have his next one in June and see the Neurosurgeon again then. Currently, he gets full head and spine MRIs. Starting with his next one, he'll be able to just get head only. Those should be much shorter and require less sedation. The sedation did quite a number on him and he was off balance and 'out of it' all day/night.

We'll see Noah's Oncologist next Thursday. At that time, we'll get his take on Noah's spine and if he will start him on supplements. The Neurosurgeon thinks the 'thinning' is a result of the high dose chemotherapy. Also, at the same appointment, we hope to get a date for when he can have his port removed.

Unfortunately, Noah has a cold. Which, I suppose I should admit, I may have given to him. Of course, an argument could be made that HE was the carrier and gave it to me and I just had the symptoms first. At any rate, neither of us is feeling very well. I have had a fever ranging from 101 to as high as 103.3 almost all week. Finally, it's staying down to closer to 'only' 100. Thankfully, Noah only has the stuffiness, slight coughing and a bit of that 'I don't feel well' attitude.

Anyway, cold or not - it's ALL GOOD NEWS! Thanks for keeping Noah in your thoughts and prayers.

God Bless.

Wednesday, March 9, 2005 12:14 AM CST

Sorry I haven't updated recently. No news is good news! Noah is doing great. His follow-up appointment with the E.N.T. for his ear infection is this Friday.

His next MRI is scheduled for next Wednesday at 8:30am. He's been complaining about back pain alot lately, I'm hoping that the thinning they saw in his spine hasn't increased. His Oncologist said that the thinning could be the reason for the back pain. On the plus side, he'll see his neurosurgeon for a follow-up immediately following the MRI so we should get the results same day. I admit that I get pretty anxious when these appointments come along. I am hopeful that the good things we see on the outside are continuing inside as well.

Another good piece of news: Noah's Oncologist has agreed that Noah no longer needs his Venous Port so it can be removed soon. God Willing, that will be Noah's last surgery. It's just another HUGE step toward our new 'normal'. I'm not sure when that surgery will take place, but it's just an outpatient surgery so hopefully it will be soon.

Please keep Noah's MRI in your prayers. God Bless!

Sunday, February 20, 2005 1:11 PM CST

Just to keep things exciting....we had our first visit back to the pediatrician today. Last night when I took Noah's hearing aids out, I noticed his ear was full of blood. We cleaned the ear out and a little while later there was more. After cleaning that out there wasn't any more for the rest of the night. When he woke up this morning, there was a little more so I called the doctor and we took him in.

Of course the sight of him bleeding from his ear had me more than a little panicked. But, thankfully, this was 'only' ear related. Apparently, although he didn't have any symptoms he has quite a severe ear infection. There is blood in the ear canal but it appears that the bulk of it is behind his ear drum. He will be on an antibiotic for 10 days, an ear drop for 5 days and then, in 2 weeks, we'll follow up with his E.N.T.

The ear infection is also having an impact on how he's hearing. Or, in this case, not hearing. Lately, even with his hearing aids, he's been talking louder and continually saying 'what?'. This ear infection would be the cause.

It was quite a different feeling to be able to 'just' go to the pediatrician. Of course, there was that brief moment of panic when I was concerned we wouldn't stay at the pediatrician but be sent back to Children's. What a relief it turned out to be a near 'routine' visit.

Of course, the medicine tastes terrible so I've once again been forced to turn to the power of Pez to get him through. As I've said before, never underestimate the power of Pez!

And, here's a piece of good news...Noah has FINALLY gained almost a whole pound!

Thank you for keeping Noah in your thoughts and prayers.

God Bless.

Friday, February 11, 2005 1:50 PM CST

Not all of the counts are back yet, but the initial test results of Noah's immune system show that his immune system has not recovered enough for him to be re-immunized yet. They did intitally indicate that it could take as long as a year, so this isn't really a surprise.

Noah's headaches seem to have subsided. Unfortunately, in their place he's now complaining of joint pain. Especially in his knees. Yesterday he actually ASKED for some medicine to make it feel better. For Noah to ASK for medicine and then WILLINGLY take it is truly an indicator that he was really uncomfortable. This can be a residual effect of one of the chemo medicines.

He still isn't eating as much, or as often, as he should but we keep trying.

All in all, he's doing great and we're thankful for his progress.

God Bless.

Friday, February 4, 2005 2:28 PM CST

Noah had his 6 month post-transplant checkup today in the Stem Cell Unit. His counts are doing good, 'almost normal'. They ran some tests to check his immune system to see if he's recovered enough to get his immunizations again. That test takes longer so the results won't be available until next week. He doesn't have to go back to the Stem Cell Unit until 1 year post-transplant.

He's made a couple of huge milestones in the last few weeks. He's now going to sleep in his own bed (rather than going to sleep on the couch and being carried to his room). He is also entirely re-potty trained. It sure took a while, but he finally got there! He is so proud.

Noah is still having headaches almost daily. Last night he had a slight fever. But, thankfully, it didn't develop into anything. According to the doctor he saw today at Stem Cell, he may be developing a cold or flu. Hopefully this isn't the case.

His next MRI is March 16th and he'll see the Neurosurgeon for a check-up the same day. Thankfully, we were able to get him an 8:30am MRI. Usually it ends up being late afternoon and they always seem to be running behind by that time. And, since he requires sedation for the MRI, he can't eat or drink before the test so that made for long, cranky days. This one should work out much better.

Thank you for continuing to keep Noah in your thoughts and prayers. God Bless.

Thursday, January 20, 2005 4:12 PM CST

Noah had an appointment with his Oncologist today and all went well. He, and his labs, look great. He hasn't gained any weight, but since he's eating the doctor isn't concerned.

The only concerning thing is that he continues to have headaches almost daily. The doctor says that headaches are common following radiation. But, since Noah hasn't had radiation, his headaches aren't 'common'. However, since his headaches aren't happening mostly in the morning and aren't accompained by vomiting or his being excessively tired, the doctor isn't concerned. He thinks he could be suffering from migraine headaches but doesn't want to take any action regarding them right now.

He will have his next MRI next month, then another one in June. He has a followup appointment with his neurosurgeon next week (unless they decide to postpone it until following his scan next month). He has a 6 month post-transplant appointment in the Stem Cell Unit the following week. After that, hopefully, we're done for a few months.

He'll also need to start physical and occupational therapy again. He still has some visible weakness and unsteadiness on the right side. And, he still suffers endurance issues.

Thanks for keeping Noah in your thoughts and prayers.

God Bless.

Thursday, January 13, 2005 3:18 PM CST

I apologize for being lax in updating this site lately. No news is good news! Noah is doing great. He has an appointment on the 26th with the Neurosurgeon for a follow-up and he'll be getting check ups in Oncology and Stem Cell in the next few weeks.

We went on Noah's Make-A-Wish trip to Disney World on the 5th and we returned this Tuesday. We all had a great time, especially Noah. We stayed at Give Kids the World Village. They have 96 family villas that are filled with Wish families each week. It's an incredible place. Noah loved it there. They had a game room, miniature golf, an ice cream parlor, a train, a carosuel, a castle for playing in and, Noah's favorite part, a heated outdoor pool. This was the first time he'd been able to swim since having his Central Line place back in March. We also ate breakfast and dinner at the Village each day.

When not at the Village, we went to Disney World, Sea World, MGM Studios and Universal Studios. Noah loved every bit of it. Between being on a Make-A-Wish trip and staying at the Village, he was treated like royalty every where we went. We got to go to the front of ride lines and character greetings. We got to see so much more since we didn't have to wait in the lines. Noah met quite a few characters and had a big hug and a kiss for each one. It was so cute!

The highlights of the trip came when we were at Universal Studios. They happened to be filming an episode of Fear Factor on the lot that day. As many of you know, Fear Factor is one of Noah's favorite shows. Alex asked one of the security people if there was any way that Noah could have his picture taken with Joe Rogan. She went to some one from Universal Studios who went to the Production Company who went to the Network who went to Joe Rogan's people and, though it took a couple of hours, we were given VIP passes and taken onto the set. We were able to watch one of the stunts up close. Unfortunately for Noah, we missed the disgusting eating portion of the show by a day. After the stunt, Joe Rogan came over for a photo-op with Noah. At first Noah was being shy but he warmed within a few minutes and was talking with Joe about Fear Factor. Christina enjoyed this special treatment as well, especially since Dippin' Dots were offered to her in the VIP tent. We were invited to stay on to watch the next couple do their stunt, but Noah was getting tired of waiting and was anxious to go see Spider Man.

We finally found Captain America at a character greeting and were immediately pulled to the side where the character handler called someone. The next thing we know, we were told to go to this back entrance for a private meet and greet with all of the Super Heroes. Noah was in heaven. Meeting Spider Man was definately the highlight for him.

At Disney World Noah discovered water rides and went on Splash Mountain about 4 times. He loved getting wet! He was very adventurous and went on just about every ride he was big enough to go on. He's already planning his next trip back! The only downside, if you can call it that, was that because another of Noah's wishes is coming true - that to be a big brother - I wasn't able to ride on hardly anything and became the official wheelchair watcher. A trip to Disney World without riding Space Mountain seems wrong, but watching how much fun Noah was having made up for it all.

It was a very emotional trip for me. On one hand it was wonderful to see him being treated so well, but it was conflicted with realizing what he'd been through and why he deserved to receive such special treatment. There was a lot of time when I was just so overwhelmed with gratitude that he's well enough to be able to take a trip like this. It's a very difficult line to walk, for me, emotionally.

Noah got to ride in a white stretch limosuine both on the way to the airport and on the way back. That was so cool for him. He's wanted to ride in a limo 'his whole entire life'. He thought it was pretty cool. And, this was his first airplane ride. He kept asking when the plane was going to 'blast off'. When we arrived in Orlando, the pilot invited Noah up to the cockpit to sit in the captain's seat and pretend to fly the plane. He also thought that was really cool.

It was an incredible week for all of us. After last year, it was great to start this new year on such a high note.

We hope that you all enjoyed your holidays. And, as always, we're grateful for all of you for being there with, and for, us during this last year. And, we pray that you'll continue to stand with us in prayer for Noah's continued health and healing.

God Bless!

Friday, December 17, 2004 4:12 PM CST

Thankfully, there isn't anything new to report. All of Noah's tests came back clear so we're just enjoying a little break from the doctors. He won't have to go back to the Oncologist until after the holidays and his next MRI won't be until February. So, it would seem that things are FINALLY starting to slow down.

Sometimes I still get so emotional and frustrated when Noah has an 'off' day. He still gets a little 'wobbly' from time to time and his endurance is still lacking a little bit. But, then I think back to where he was a year ago, not able to talk, barely starting to eat and unable to even sit up or stand on his own and I realize how blessed we are that he's made the progress that he has. I am so thankful for his healing. I try not to worry about tomorrow but rejoice in today, but some days it's just difficult to forget. He still complains about headaches and, even though I know he just had all of the scans and everything was fine, I still get that sick feeling in my stomach. Hopefully that will get a little easier every day.

Please keep little Hanah, and her family, in your thoughts and prayers. We met Hanah, briefly, at the Kohl's House. Monday she will undergo her stem cell transplant and will be in the hospital for the holidays. Please pray that she not suffer too many of the harsh side effects from this process. Unlike Noah, she will also receive radiation. Please keep this family in your prayers.

We'd also like to ask that you say a prayer of thanks for the healing so many have received over the last year. Logan, who had a brain tumor removed. Kendall, Baby Grace and Baby Ivana who received new livers. Marcus, who had a successful stem cell transplant. Bret, who had the same type of tumor as Noah. Rachel, who received a kidney transplant. Jimmy, who also spent last Christmas away from home battling Leukemia. Tessie, who also received a new liver and is still undergoing Chemo. Baby Ryan, who had neuroblastoma and still has a trachea. Thankfully, all of these children have received healing and will be home for the holidays this year. Thank you, Lord, for all of these miracles.

God Bless.

Thursday, December 9, 2004 1:40 PM CST

Great news! I spoke with Noah's Oncolgist this morning and his bone scan was completely normal. He didn't have the results from the bone marrow aspiration or biopsy but he said that he would be very surprised if those showed anything abnormal. As the MRI showed, there is early, subtle thinning of the spine, but at this point they are no longer concerned about it. His next MRI will be in 2-3 months. If that MRI shows increased thinning, they will start giving him Vitamin D and Calcium supplements. They don't want to give those too quickly because they have side effects, like kidney stones, that they would obviously like to avoid if possible.

Noah is doing great. He's over his cold now. Thankfully, it didn't develop into much of anything. Keeping him from getting colds will be our biggest winter challenge.

We went to the Wintertime Event at the Museum of Science & Industry Tuesday night. It was a hospital sponsored event for transplant recipients. It was a lot of fun and a bit of a Kohl's House reunion. We saw Marcus, Baby Grace and Baby Ivana and all are doing incredibly well and looking absolutely fabulous, Thank God! It was so good to see them all and see how well they are doing.

Thank you for keeping Noah, and all the children still fighting, in your thoughts & prayers.

God Bless.

Thursday, December 9, 2004 1:40 PM CST

Wednesday, December 8, 2004 6:01 PM CST

Noah and I just returned home from a long day at Children's. He had a bone scan, a bone marrow aspiration and a bone biopsy. As usual, he was very brave and did a great job.

He was sedated for all of the tests so he's pretty out of it but he should be fine by tomorrow. The bone marrow aspiration and biopsy could cause him some pain, but so far he isn't complaining. He's just happy to be home and thrilled that he's finally able to eat and drink for the first time today.

Hopefully, we should get the results tomorrow. As soon as they tell us anything, I'll update.

God Bless.

Wednesday, December 1, 2004 1:48 PM CST

Noah and I made the trek down to Children's this morning for his bone scan. But since he now has a full blown cold he couldn't be sedated so they postponed his scan until next Wednesday. They are going to try to schedule the Bone Marrow Aspiration for the same day as well. Not until these tests are completed will they have the complete picture. Until then, we'll just work on getting Noah over this cold. Since he's still immune compromised, if he gets a fever we'll have to take him to the E.R. Hopefully, it will be a non-event and will just move along quietly.

Thanks for checking in and for keeping Noah in your thoughts and prayers.

God Bless.

Tuesday, November 30, 2004 6:51 PM CST

I finally received an update from the Oncologist. His e-mail read as follows:

No abnormalities were found i.e. the scan and X Ray did not pick up the 'abnormal' pattern (density of the bone wasnt what it is normally) we were seeing in the MRI scan. (this is more of a relief than a concern).

If the bone scan and bone marrow are normal too then we have nothing to worry about further from oncology stand point.

We will contact the endocrine (glands related specialist) to look for calcium/hormones that control calcium levels - related problems if both the tests turn out negative as well.

the bone scan is tomorrow and we will try and do the BM early next week (I would prefer to do the procedure under local as it could be quite painful)

- - - -

As he indicated above, they've scheduled his bone scan for 8:30am tomorrow morning. I was told to take him up to clinic and they might do the bone marrow aspiration right then. However, since he says they will do it early next week - we'll see what tomorrow brings.

So far - good news!

God Bless.

Tuesday, November 30, 2004 2:29 PM CST

I know you're all checking in for results. Unfortunately, I still haven't heard anything. But, for your viewing pleasure, I've added some new photos to the photo album.

I have left messages all over the place and finally heard from someone who told me she, or the Oncologist, would get back to me later this afternoon. I'll update as soon as I hear anything.

God Bless.

Wednesday, November 24, 2004 7:55 PM CST

Noah and I just made it back from Children's. What a journey that was. The weather and the driving were terrible. But, thankfully, we made it home safely. Unfortunately, no results. Hopefully we'll get some on Friday. It was certainly odd being there today. Last year, the day before Thanksgiving, was when Noah had the first brain surgery and we learned the diagnosis. To sit in the same waiting room today, again the day before Thanksgiving, was quite emotional to say the least.

Noah got his hearing aids today. He was so excited and so proud. When the Audiologist first put them in he immediately turned his head to me and said 'check this out, this is COOL!'. He's been telling me all the things he can hear so they must be working. Right now he's watching the American Idol Christmas special starring one of his favorite people, Ruben Studdard. He's intrigued by the monitors Ruben is wearing in his ears and thinks it's pretty cool that his hearing aids are like what Ruben's wearing. He's also strumming his guitar along with all the songs. Any one who has seen Noah with his guitar can just picture what a beautiful picture it is!!

However challenging this last year has been, it's certainly put things into perspective. This year we have so much more to be thankful for. We're especially thankful for the healing that Noah claims today. We are humbled and grateful to all of you who have been there for, and with, us during this last year. We could not have gotten this far without the continued prayers, love, support and encouragement from so many. This situation, while anything but ideal, has provided us with opportunities to cross paths with so many people we may not have met otherwise. We're thankful for each and every one of you. You have all blessed us in so many ways. We wish you a very blessed and happy Thanksgiving.

God Bless.

Tuesday, November 23, 2004 6:36 PM CST

One year ago today Noah had the MRI that started this journey. In a rather ironic twist, he had his expedited MRI today. Before I even got home from the hospital, I heard from Noah's Oncologist. The good news is that Noah's MRI didn't show any signs of the tumor. Thank God! The bad news is that it did show cause for concern. There is a thinning in the bones in Noah's back/spine. The Radiologist's first impression was that it was consistent with a child who'd received radiation. But, since Noah hasn't received radiation, they are concerned. The best case scenario is that it's caused by a deficiency of Vitamin D and Calcium. This can be caused by the depletion of the immune system, leaving it unable to absorb the vitamins. The worst case scenario is there could be another type of tumor or Leukemia. The Oncologist has ordered a CT Scan of his back/spine and a regular back x-ray. He will have those at 4:00pm tomorrow. This will give them a better understanding of what they are looking at. Next week they are ordering a bone scan and a bone marrow aspiration. This will give them the complete picture. His Oncologist said that since Noah has a history of 'best case scenarios' he's expecting it to be just that. But, all tests have to be done just to be sure.

If they tell me anything tomorrow, I'll update. Please keep Noah in your prayers.

On a happier note, Thank you to every one who came out to Noah-palooza. Noah was so excited and had a great time. He has decided that he's going to have a Noah-palooza every year!

And, one more happy little milestone: Yesterday morning Noah had his first 'bed head' since his hair starting growing back. Of course I was more excited than he was but it was so cute, I left it! It's amazing how much joy the little things bring. :)

God Bless.

Tuesday, November 23, 2004 4:10 PM CST

One year ago today Noah had the MRI that started this journey. In a rather ironic twist, he had his expedited MRI today. Before I even got home from the hospital, I heard from Noah's Oncologist. The good news is that Noah's MRI didn't show any signs of the tumor. Thank God! The bad news is that it did show cause for concern. There is a thinning in the bones in Noah's back/spine. The Radiologist's first impression was that it was consisent with a child who'd received radiation. But, since Noah hasn't received radiation, they are concerned. The best case senerio is that it's caused by a deficiency of Vitamin D and Calcium. This can be caused by the depletion of the immune system, leaving it unable to absorb the vitamins. The worst case senerio is there could be another type of tumor or Lukemia. The Oncologist has ordered a CT Scan of his back/spine and a regular back x-ray. He will have those at 4:00pm tomorrow. This will give them a better understanding of what they are looking at. Next week they are ordering a bone scan and a bone marrow aspiration. This will give them the complete picture. His Oncologist said that since Noah has a history of 'best case senerios' he's expecting it to be just that. But, all tests have to be done just to be sure.

If they tell me anything tomorrow, I'll update. Please keep Noah in your prayers.

On a happier note, Thank you to every one who came out to Noah-palooza. Noah was so excited and had a great time. He has decided that he's going to have a Noah-palooza every year!

And, one more happy little milestone: Yesterday morning Noah had his first 'bed head' since his hair starting growing back. Of course I was more excited than he was but it was so cute, I left it! It's amazing how much joy the little things bring. :)

God Bless.

Thursday, November 18, 2004 9:06 PM CST

We had a clinic visit today. Noah's counts are doing pretty well. His white blood count was a little lower than they would've liked, but since his ANC was still over 1000, they are not concerned. The only area of concern is with headaches he's been having the last week or so. He's been complaining about them pretty regularly and on Sunday he had a small seizure. His next MRI is scheduled for November 30th. Because of the headaches, his Oncologist is not comfortable waiting that long and is working to get Noah a quicker MRI appointment to rule out any new tumor growth.

Also, as a result of the seizure, his Oncologist spoke with his neurologist and they decided to alter the dose of anti-seizure medication. He had been on what they considered to be a low dose and they did warn that break through seizures were possible. It's also possible that the medication is the cause of the headaches.

This was Noah's first clinic visit since his central line was removed. His central line was how they drew all of his labs. In the absence of the central line, they either draw from the vein or access the venous port. Noah decided that he wanted to just put the 'magic cream' on his hand to numb it up and have it drawn from there. He was scared, but he was really brave. Any discomfort he experienced was quickly forgotten with the application of a Power Ranger Bandaid! He was so excited about the bandaid, he had to take an extra for the road.

Noah's grown another inch, but he hasn't gained any weight.
Everyone who saw him at clinic today remarked how great he looks! I can never hear that too much.

After clinic today we went to a event at the Hospital. Hyundai has been sponsoring 'Hyundai Hope on Wheels'. Hyundai has taken a Santa Fe to 14 cities across the country to Pediatic Cancer Centers. They have made monetary donations and, at the same time, have had children with cancer place handprints on the Santa Fe. Today, we were there for the presentation of the check to the hospital. They donated $100,000 to Children's with $50,000 of it specifically directed for cancer research. We had lunch and then Noah was able to place his hand print on the driver's side door of the Santa Fe. Of course, he entertained and amused all with his antics. I've tried to explain to him that this is the only time it's okay to put a paint handprint on anyone's automobile. Should this little lesson be lost and you find yourself the recipient of a Noah paint paw I have 2 words for you: Blame Hyundai. :)
There is a picture of Noah showing off his handiwork in the photo gallery.

Noah is very excited that Christina is coming this weekend for Noah-palooza. He's been looking forward to having his party and he's so excited that Chrissy will he there too!

Thank you for your continued prayers for Noah. Specifically, for relief from his headaches and a clean MRI.

God Bless.

Wednesday, November 10, 2004 2:06 PM CST

Please join us for NOAH-PALOOZA!!

Noah-palooza, named by Noah, is Saturday, November 20th at 6:00pm at Daniel's Den in Plano. Daniel's Den is located inside On A Wing and A Prayer Bookstore. Noah-pallooza is Noah's party to celebrate his 4th birthday (a little late), his end of treatment, his home-coming and his being so brave through all of this! He's been planning and looking forward a party for months. If you're reading this (or having this read to you) - you're invited. Please come and help us celebrate Noah. Lightwalker will be playing at the Den that night starting at 7:30pm and Noah is planning to take the stage with his little blue guitar for a number or two. We're planning to have cake and dinner (not necessarily in that order) so please email me at cinebesan@yahoo.com if you're able to make it. We'd love to see you there!

The dressing from the central line removal came off Sunday and Noah took a 'real' bath to celebrate. He was so excited to be splashing and 'swimming'. Who would have thought a bath would be so exciting. But then, he hasn't been able to a bath in more than a couple inches of water since March.

Noah has his first visit to the Audiologist since he finished all of the chemo. Unfortunately, as we expected, he suffered a greater loss after the mega blast. He has reached severe to profound loss in high frequencies and now has some mild to moderate loss in the lower frequencies. So, he's able to hear you talking but he isn't always able to make out the words clearly. He was fitted for his hearing aids today and, no surprise, he picked camoflauge. He should have them within the next 10 days. Unfortunately, they are $1300 per ear and insurance doesn't pay for them. It doesn't make much sense that they wouldn't cover them but, considering how much they've paid out for him to this point, we can't complain. The good thing is that he can keep the same hearing aid until he's older, they will just refit the ear molds every 6 months as he grows. Tommorow he has an appointment for a followup on the ear tubes.

Everything else, to this point, is going well. He has appointments with the Oncologist, Allergist and the Opthamologist next week. His next MRI is on the 28th.

We're so grateful for your continued support, encouragement and prayers. God Bless!

Thursday, November 4, 2004 11:05 AM CST

Noah had surgery to remove his central line yesterday. As usual, he did a great job. It went better than I had expected. Since when they placed the line they had to make an incision in his neck to run the line down to his chest, I thought they would have to make another incision to get it out. Thankfully, they just removed the entire line through his chest. No incisions, no stitches, just a dressing that will remain for 5 days. We have to keep an eye on it to watch for excessive blood loss, bleeding that doesn't stop or signs of an infection. I got a little scare when I looked at it last night and the guaze was covered in blood. I called the doctor and they suggested that, if we weren't comfortable, we bring him into the E.R. to have it checked. I decided to wait a little longer to see if it got worse and it didn't, so we didn't take him in. The biggest problem is trying to keep him from running and jumping around. He's supposed to have 'quiet activities' for 1 to 2 weeks. Uh, huh, sure. Let's review - He's a 4 year old boy. Need I say more?? Getting him to stay calm and quiet would probably require duct tape, bungee cords and super glue. Somehow, I doubt that would be the best course of action. So, instead I just follow him around all day reminding him that he can't jump off the couch or ninja fight or throw himself on the ground to work on his break dancing or wrestling moves. Maybe I could just wrap him in bubble wrap. :)

He's looking and feeling great. Next Wednesday we see the Audiologist and Thursday we see the Otolaryngologist (ENT). These appointments are for his hearing aid evaluation and fitting.

He's eating pretty well and has started to drink Soy milk again. According to the nurse yesterday, he now weighs almost 40 pounds which means he's gained almost 2 pounds!

In the next few weeks he'll see his Oncologist, his Nerologist, his Neurosurgeon and get an MRI. God willing, all of those appointments will go smoothly and we'll get only good news!

Thank you for keeping Noah in your prayers. God Bless.

Thursday, October 28, 2004 1:08 PM CDT

Still at home and doing great. Noah got to eat grapes yesterday and he just finished his first banana. It's the first time in more than 3 months that he's been able to have either. Who would have thought such joy would come from fresh fruits?!

Every day, at least 4 or 5 times a day, he says "I'm so happy to be at home". In fact, he's so happy to be home he hasn't even wanted to leave to go to pick out a pumpkin. He ventures outside with Daddy after he gets home to 'hunt for sticks'. For some reason, he's collecting them. I'm sure when spring comes and the landscapers come to mow the lawns they will just LOVE his collection. Guess we'd better start preparing now for the letter we'll get from the association. A new rule will probably be imposed prohibiting the unlawful assembly of sticks in common areas. :)

We went to a Halloween party at a hotel in Elgin last weekend for children with special needs, disabilities and life threatening illnesses. (Ok, so he's willing to leave the house if there are large amounts of candy involved.) They had each room on 1 floor of the hotel decorated and the kids went trick or treating room to room. He dressed as a Blue Power Ranger for the event, but tells me that he will be a G.I. Joe on Halloween. Good thing he has quite the camoflauge wardrobe to accomodate the last minute switch. He's looking forward to trick or treating with Caleb. It was one of our goals to get home so they could trick or treat together. For awhile it looked doubtful, but thankfully we reached that goal. Since he's feeling better this year, he should have a more enjoyable time this time.

His next appointment is next Wednesday when he gets his central line removed. Then it gets a little more busy. We'll have to see his Oncologist, get an MRI, get his hearing test, see the Ear doctor (I forgot his 'technical' name), go back to the Neurologist and get to Brain Tumor Clinic to see his Neurosurgeon. But, thankfully, we'll get to come home after each visit.

Noah is really getting around well and is starting to get back into the routine of 'home'. He is definately a happier child since getting home. Every morning he asks me if we have to go to the hospital today and when I tell him 'not today' he gets so happy he jumps for joy. Ok, I admit it - so do I.

Thank you for your continued prayers and support. God Bless.

Monday, October 25, 2004 3:24 PM CDT

We went to clinic this morning. It was nice to get there and be put into an exam room rather than a treatment room. The exam room means in and out, just the way we like it. His counts are doing good. His white blood cell count is 2.2 and his platelets are up to 76! This was his last regular visit with Stem Cell, they are sending him back to Oncology where he'll been seen about every other week for awhile.

The best news.....next Wednesday Noah will be having the surgery to remove his central line! He is so happy that today's dressing change was his last! The venous port will remain for awhile longer, but it's no big deal and is very low maintenance. It has to be accessed once a month for flushing and they can use it for labs as well. But, since it's entirely under the skin he can do 'normal' things like taking a bath in more than just 3 inches of water and he can go swimming! He reminded me this morning that we told him we that since he couldn't swim all summer we would take him to a hotel after the line came out. It will be a celebration for sure!! Getting this line out takes him one step closer to 'normal'. Of course, given his genes, it's doubtful he'll ever be accused of being 'normal'.

The other big milestone: His food restrictions have been lifted and he can now eat anything he wants, including fresh fruits. Now he can enjoy a lovely banana or some fresh grapes. He has really missed those things. And, with any luck at all, the bananas will work to plug things up a bit. We're still battling that little 'poop water' (as Noah so eloquently calls it) problem. And, I say WE because it effects us all in more ways than one! Don't you love the graphic images you can pick up here on Noah's page? Perhaps a good rule of thumb would be to not read this page any where close to any meals. Maybe a warning to that effect should be posted at the top of the page? The doctors don't seem to have any explanation why he still has it, nor do they seemed concerned. Perhaps if they had to deal with it, just once, they'd look harder for a cause/resolution.

More good news, Noah weighed in at 39 pounds this morning and he's standing an impressive 42 inches tall. He's managed to grow at least 3 inches since all of this started. His weight is not quite where it was when he started, but he's holding his own.

Nothing but good news, FINALLY! Noah and I were talking about his little friend, Baby Grace, who is home now and thriving after her second liver transplant and he said that God was healing them good. Indeed!

God Bless.

Tuesday, October 19, 2004 3:43 PM CDT

WE'RE HOME!!!

And, with that, I'm finally able to update his photos. Doesn't he look great?!?

We went to clinic yesterday. His counts came down slightly, but his platelets went up 1 - on his own, from 66 to 67. It isn't huge, but it means he's finally doing it on his own. He's doing great. So great, in fact, that his next clinic on Monday will be his last. After that we go back to Oncology. His counts will determine how often, but it may be as little as every other week. Huge progress - FINALLY!!

We went to the Neurologist yesterday as well. Nothing that we didn't already know. They are thinking about doing a sleep EEG, but other than that we'll just keep giving him the seizure medication for a few months. The biggest challenge in the Neurology department is to get the insurance company to understand that there is a medical necessity for additional physical & occupational therapies. Hopefully, with the assistance of his doctors this won't prove to be too much of a fight. All they have to do is look at him to know that, even though he's used his 'allotted' visits for the year, he still needs more.

We're 77 days post-transplant now and many other freedoms, like eating fresh fruit and being in large crowds, don't come for another 23 days or so. We've made it this far we can cruise through 23 more days. It's really good for him to be outside, hopefully the weather will cooperate for a little while to allow that to happen.

He is so happy to be home. It was cute to watch him run from room to room and thing to thing remembering them. He went into the bathroom and was thrilled to see his stool. "Remember I used that before?" he asked. And, on and on it went for a good hour.

Now we try to regain some sense of normalcy. I'm not sure what that is at this point. I've been a bit of an emotional wreck the last couple of weeks with the last few days being the worst. I start crying as often as another leaf falls lately. I knew it was getting bad when an Applebee's commerical sent me into tears. Hopefully this stage will be short lived. I'm not sure what's going on. I suppose I'm scared of what happens next. I try not to think about it and just be thankful for the healing he's received. But, every headache, stomachache, every little thing in general causes worry. I feel kind of like I'm just waiting for the other shoe to drop. Then, there is the memory of this time last year. Realizing now he was already sick then. It will get better with each day, right? Yes, of course it will. Let's just take one day at a time and not worry about anything unless it actually happens. That seems logical, yes, let's go with that. :)

Now, as for where we go from here. In the next few weeks I'll be taking Noah back to the Audiologist and then to his ENT. He'll be getting hearing aids in the not too distant future. It has become increasingly obvious that he's having a real hard time hearing and understanding. It will be a good thing to hear him say 'I can't hear you' less often.

Well, again, it's good to be home. And, with that I must now face the disarray that has become our home. If it's been more than a few days since you've seen an update - send in the authorities, I'm probably trapped under something!

Love to all. God Bless.

Thursday, October 14, 2004 9:39 AM CDT

A very quick clinic visit today (the very best kind). His counts were good. His platelets stayed at 66 (since Monday). This is the first time they have stayed the same, not dropped. This may be a sign that he's starting to produce them on his own. His ANC was 1060, which is wonderful. It's not 1890 as they said on Monday, but they said that that level could have been due to his trying to fight an infection or a bacteria. Regardless, it's still a good number and he didn't need to get anything today so we'll take it.

We go back to clinic on Monday for labs. After that, we'll go every Monday for awhile. The length of time is determined by his counts.

Late Monday afternoon we go to the Neurologist for a consult on the seizures. He hasn't had one since the one on Friday, which is wonderful. Hopefully it's controlled now. Since his appointment is so late in the day Monday we'll stay at Kohl's House Monday night and will go HOME early Tuesday. THANK GOD!! It's definately time.

Noah looks wonderful. His hair is really sprouting now. He says that when it all grows in he's going to shave it off. At least we know he can grow it. His walk is much steadier as well. All good things happening, finally.

God Bless.

Monday, October 11, 2004 2:38 PM CDT

We just got back from clinic. His counts are coming up - finally! His WBC is 2.7, Hemoglobins 9.9 and Platelets 66. They tell me that his ANC is 1890!! Since, on Thursday, it was just 368 I'm floored. I told them I can't believe those counts until I see another one to confirm it. They think they will be the same at Thursday's clinic so I'll wait for personal confirmation until then.

Friday afternoon he had another seizure, so they increased the night dose in hopes that that will help get them controlled.

Now, for the best news. When we go back to clinic on Thursday, if his counts hold and he doesn't have any more seizures we can go HOME!! If he has more seizures, they may decide to have him stay until after his appt with the Neurologist on Monday. Even if that turns out to be the case, we can do another week with our eyes closed. At least the word is HOME is now being used. Of course, for obvious reasons, it's still being spelled in Noah's presence.

He looks great. He has good color and his hair seems to grow a bit more each day. He now has eyebrows and eyelashes as well. His headaches are few and far between now and he just seems to be feeling better all the way around.

As always, thanks for keeping him in your thoughts and prayers. God Bless!!

Monday, October 11, 2004 2:38 PM CDT

Friday, October 8, 2004 12:00 AM CDT

We went to clinic yesterday. Noah's counts were good so he didn't need to get anything. His ANC dropped again, so they are watching that. If it drops to low they may decide to either put him back on the GCSF (which helps raise his counts) or give him the rest of the frozen cells. They are keeping an eye on that. There wasn't much talk of when we can go home other than to say that his counts have to hold and the ANC needs to stop dropping. There is a thought that they may or may not keep us here until Noah's appointment with the Neurologist, which isn't until the 18th. As much as I'd like to get him home, I have to admit I feel safer here, just across the street, until the seizures are controlled. We're going to see what the weekend brings and discuss it again at Monday's clinic.

He worked with Physical Therapy yesterday. She's been working with Noah while he's been in the hospital ever since the original surgery. She continues to remark how well he's doing and how far he's come. We were talking about this little man running down the hallway from her once being just a limp, frail, drooling little guy who couldn't even hold his head up on his own, much less control his body. He's been such a fighter and has come so far.

He is very excited that Christina is coming tonight. He hasn't seen her since he was first hospitalized in July, so he's got BIG plans for her. I hope she's up for a weekend of 4 year old fun at the Kohl's House.

As always, thank you all so much for keeping Noah in your thoughts and prayers. It has been a great source of support and encouragement for all of us knowing there are so many people lifting him up. We hear from so many of you and we know there are countless others we don't hear from. But, we know you're out there and that helps more than you can realize.

Love to all. God Bless.

Wednesday, October 6, 2004 12:48 AM CDT

Ok, let me try this again. Did you ever feel like you've FINALLY gotten all the big things taken care of and it was the little things that were sure to drive you over the edge?? Those 'little' things have been really sticking it to me these last few days. One prime example: I almost got an update completed (which I've been trying to accomplish for a few days) when Noah walks up to me with this panicked look on his face and says 'Mommy, I love you, but I pooped in my pants'. Obviously no other options than to shut it down and take care of that. Ok, well, yes, there are other options but none of them really seemed appropriate. Anyway, sparing you the details, that should give you a clue as to one of the problems he's been having. He doesn't know it's coming, 'it sneaked out' - Noah likes to tell me. Typing it now, it seems funny, in those moments, trust me, the humor escapes me.

He had a couple of seizures over the weekend and another one Tuesday morning. On Saturday, he spent most of the day complaining about a headache and was vomiting. He slept most of the day, it was the only time he seemed comfortable. As soon as he'd wake up it would all start over again. Add to the aforementioned 'issue' and you've got all the ingredients of a non-restful weekend, for both of us. Sunday, he seemed much better, but since even after drinking there were no trips to the bathroom, I was getting concerned about dehydration.

Monday afternoon we went to clinic. They agreed with the dehydration concerns and gave him fluids. They also gave him platelets even though his counts wouldn't have called for them normally. He was at 33 and they usually wait until he's below 20 to give them to him. But since he's been having seizures that increases the risk of bleeding in the head during a seizure so they felt it best to keep the platelets at a higher level.

Monday, during Body Parts (a game the kids can play on the hosptial channel) Noah won a baseball autographed by Kerry Wood, Mark Prior and Mike Remlinger (of the Cubs). He also got an autographed picture of Kerry Wood and a new Cubs hat. He was very excited. Unfortunately, since he's considered outpatient, he wasn't able to go upstairs and meet them or have his picture taken. He was disappointed, but when he won he felt better.

Today, I'm happy to report that he's having a good day. No episodes of any type so maybe the medication is starting to kick in. I certainly hope that's the case. I'm hoping that when we go back to clinic tomorrow they will say that they will keep us through the weekend and if there aren't any problems they will let us go home next week. I think getting him home will do a world of good for him. (Ok, yes, and for me too).

It has definately been a rough couple of days but we've fought through tougher and we'll get through this too. To God be the glory.

As always, thank you for keeping Noah in your prayers.

Love to all. God Bless.

Friday, October 1, 2004 10:21 AM CDT

Thursday morning started out on a very disturbing note. We had an early clinic visit, so I showered while Noah still slept. When I got out of the shower I heard what sounded like Noah jumping on the air mattress. As I walked out of the bathroom to tell him to stop I saw he was not jumping on the air mattress but having a full blown grand mal seizure complete with loss of bladder. It was incredibly frightening. Since I wasn't there for the whole thing, I can't be sure how long it went on the part I was there for went on only for about 15 seconds. For the next 10 minutes or so following he was unresponsive. After that, he woke up and seemed fine. We hurried over to clinic and by that time he was fine and had no idea what had happened.

Since his MRI was clear and showed no tumor growth or increased pressure, they ordered an EEG and went ahead with the spinal tap. They were originally going to sedate him for the spinal tap but decided against it. They put some EMLA (aka as 'magic cream') on his back to numb it alittle, but it was incredibly painful for him. They had a nurse holding him down to try to keep him still. He was screaming, but he was so brave. After it was done, he quickly forgave when he was allowed to pick a toy from the treasure chest. Thankfully, the spinal tap showed no existence of tumor cells, not even dead ones. On top of a clear MRI, this was the best news I could have heard.

We waited for hours until they were able to get him in for the EEG. When he finally got in for that he did a great job as well. He thought it was pretty funny to get all that gel and wires stuck to his little bald head. With all of the gauze and tap and gel and wires, it was a rather amusing picture. I wish I would have had the camera. Anyway, he did great at that too and it showed no abnormalities.

So, what does all of this mean? It means that they don't see any grossly abnormal things that would cause the seizure. But, since he has scar tissue from the surgery, they believe that it is caused by the tissue right at the edge of the scarring. They all felt comfortable with not admitting him (probably because we're right across the street), but as a 'cover' they are going to put him on medication for the next 2 to 3 months. After that they will try to taper it off and see what happens. The worst part about that is that the medicine they are putting him on can cause irritability and crankiness. I almost broke into tears, then I just had to laugh. As bad as he's already been, this is exactly the medicine we need, right? But, Ok, bring it on. How much worse can it get? I suppose he could attempt to throw me in front of a car or scratch my eyes out, but what the heck - let's give it a run. They say it would only take a couple of days to notice if he would experience this side effect and if he does they can switch him to something else. They are limited, somewhat, in what they can give him because a lot of the seizure medications will impact his white blood cell count. And, since he doesn't have much, they can't risk that.

His counts dropped a little yesterday but he didn't require any blood or platelets. This is great. It's been 2 weeks he's made it without needing blood and an entire week without platelets. That's definate progress.

I'm not sure what, if any, delay the seizure will have on the timeframe for going home. We go back to clinic on Tuesday, maybe we'll find out then. I have to say that since Alex is gone, I feel more comfortable being this close for now.

Anyway, it was a very long and trying day and we take the good with the bad. I have no doubt we'll get through this too. Of course it makes it so much easier having gotten so much great news.

Noah looks great and seems to be feeling good. He's not as skinny as he was, his eyebrows and eyelashes are coming back in and he has some little fuzz sprouting on top of the little bald head. He loves it. But, he says that once he grows hair, he's going to shave it all off anyway.

Thanks, again, for keeping Noah in your thoughts and prayers. He is amazing. He has been through so much and it just keeps coming but he just keeps fighting. He is remarkably strong and very brave.

God Bless.

Tuesday, September 28, 2004 8:44 PM CDT

Noah had his MRI today. It was a difficult day for him. We checked in at 10:45 with the intention of his being sedated and on the table at noon. Unfortunately, they were running about 2 hours behind. Given the fact that he's newly 4, he isn't long on patience to begin with. But add in the fact that he wasn't able to eat or drink before the test, 2:00pm was a bit longer than he could comfortably handle.

Then, he had trouble being sedated. They said that when you are sedated as often as Noah has been, you can build up a tolerance to the medication and require more. He was given the max dose for his weight, but another med had to be added as well. They said it could also have been due to his irritable state prior to sedation.

After the test, he woke up from the sedation more quickly than he usually does. I can say that slower definately seems to be better. Once we got back here to the Kohl's House he kind of lost it. He got extremely agitated and tried to run off on his own. Since the sedation hadn't totally worn off, he could hardly stand, much less run - but he was determined. Of course, he fell with each attempt which just made him more angry. He was punching and kicking me and screaming loving things like "I hate you" and "Shut up you idiot". I assure you that he doesn't say these things on a regular basis, but they were flying out of him today. The sedation, they tell me. It got to the point where I actually had to hold him down. It went on for nearly and hour before he finally wore himself out and fell asleep. All in all, not a pleasant experience for either of us. Hopefully, he'll sleep it all off and wake up the kinder, gentler version of Noah.

Daddy headed out of town with the band today. He'll be gone until some time next Monday. Noah is not taking that very well either. On top of his already moody state, this will not help. I suppose I only mention this because I will need an extra ounce of grace to get through the next week on my own.

He's still complaining about the headaches. Sometimes he cries because his head hurts, but then his head seems to hurt worse when he cries. It makes us wonder if there is pressure building up in his head again. Anwyay, we go back to clinic again on Thursday. Hopefully, I'll hear about his MRI before then and, then if it's clear what the plan for the spinal tap is. It goes without saying that I hope it's clear, but I certainly hope they can figure out what's going on with this little guy. There have been more than a few comments from those around us how different and moody his temperment has been these last couple of weeks. Definately a different Noah. And, unfortunately, he's usually only like that when he isn't feeling well.

Thank you to everyone who has sent him cards, both via mail and e-cards. It's still one thing that seems to get his mood turned around - mail. Too bad it only comes once a day. :)

As always, thank you for keeping Noah in your thoughts and prayers. God Bless.

Monday, September 27, 2004 9:45 AM CDT

A quick clinic this morning. Which is good because it means that Noah didn't need anything. His hemoglobins are holding and, since he just got platelets on Friday, those are still up too.

Unfortunately, he is still having headaches and we've noticed over the weekend that his balance is off a little bit so he's walking with a little more difficulty now. Determined not to let it stop him, he presses on. But, since the body can't always win on will alone, he took a few tumbles over the weekend. Nothing serious, just a skinned knee, a bumped noggin and a little frustration.

Obviously, because of his history, they are concerned about the headaches, as are we. He is not one to complain, so when he does, I know it's real pain. They are planning to do an MRI of the head and spine tomorrow and if it's clear they are planning to do a Spinal Tap. They are taking it very seriously and want to be sure they rule every thing out.

On a lighter note, we were able to find the weapon needed to complete Noah's Blue Power Ranger costume he got from Miss Lisa & Miss Maggie for his birthday. While he's prepared for Halloween, he also puts on the costume every few days to 'rid the Kohl's House of evil'. And, at the same time he works on his Ninja moves. Last week he went into clinic wearing his Raphael (Teenage Mutant Ninja Turtles) gear. He did his best to drive out the bad guys there too. And, in the process he amuses those around him.

Thanks for keeping Noah in your thoughts and prayers, especially over the next couple of days.

Love to all. God Bless.

Friday, September 24, 2004 5:44 PM CDT

Clinic again today. His white blood cell count is up very slightly to 1.4, and his ANC is up to 500. His red blood cells were down to 10.8 and his platelets were at 23. So, he got platelets today and may need blood at clinic on Monday.

The CT Scan was clear, but Noah is still complaining about headaches throughout each day. He says it hurts so much it makes him want to cry. So, they've scheduled an MRI for noon on Tuesday - just to be able to rule every thing out. There doesn't seem to be an obvious reason for him to have the headaches, but since he isn't one to complain, they are taking it seriously.

If Noah's counts continue to inch their way up, we may be able to get to a once a week clinic routine and when we get to that point, we'd be able to take him home.

All in all, he looks great and, with the exception of the headaches, he feels good. The physical therapist worked with him at clinic today and was very impressed with the progress he's made. He's almost able to stand one one leg (or one knee as he calls it) unaided. He still has some weakness on the right side so that's the side that he struggles with the most. But, his determination is something. He usually tries to run away from her and attempts to hide. But he warms up very quickly and has no idea that his running away is actually part of the therapy. He's doing much better staying steady while picking up speed. He's a tough little cookie.

Noah can receive free e-cards at www.childrensmemorial.org
enter Kohls for the room number and they will forward them to him here at the Kohl's House.

Love to all - God Bless.

Wednesday, September 22, 2004 2:49 PM CDT

The final answer: No second round. His counts came up slightly today, white blood cells to 1.3 and ANC to 351. His hemoglobins were 11.1 and platelets were 40, so he didn't need anything today.

Noah has been complaining about headaches for a week now, more so the last couple of days. Yesterday morning he woke up holding his head and screaming, this morning it happened shortly after he woke up. He's had pain on and off during the day, but they are most concerned with the morning headaches. He's also been incredibly irritable and has been having extremely mood swings. Sweet little boy one minute, terror the next - not the typical 'just turned 4' type of stuff. It's been so bad that the director here at Kohl's House actually asked if he was on any new medication because it's been so out of character for him. Of course, the immediate concern is tumor growth or increased pressure in the head. It could be something as simple as a sinus issue, or it could be nothing at all - but they thought it best to check it out. So, we're getting a CT Scan later today.

We're due back in clinic on Friday for another lab draw and to check if he'll need platelets. So far, the platelets he got on Friday are still holding, 5 days - that's a good thing.

The decision whether to give him his cells back will come in the next 10 days, but if his counts continue as they are - they will save them. They can be kept frozen for 5 years.

Noah is anxious to go home (who can blame him) being here is better than being at the hospital, but it's not as good as being at home.

For those that are interested, we found out that Noah can still get free e-cards via www.childrensmemorial.org. For the room number, just put Kohls - I'm told he'll get them.

Please pray for strength for mom, the last few days have been extremely difficult for me. I sometimes wish they had a padded room here so I could just bang my head against the wall for awhile. I just suggested this to Michelle, the director here, she suggested I walk down and stand under the "L" train and when the train passes over I just scream my head off. Somehow, that seems much less satisfying. I'll get through, like I always do, it's just been 'one of those days' for too many days in a row now.

Love to all - God Bless.

Monday, September 20, 2004 1:04 PM CDT

We went to clinic this morning. And, as the doctor said when he came in with Noah's counts 'Noah's body has spoken, and it's said "no more"'. Based on how far Noah's counts dropped over the weekend, he won't be getting forward to the second stem cell transplant. His white blood cells dropped to 1.2, but the more deciding factor was his ANC having dropped from 1600 to less than 300.

They are not concerned with his being well enough to make it through the next round, but are more concerned with what would happen in the months after. Since his counts are so slow to recover this time, they are concerned he could be dependent on blood products and platelets for too long after - leaving his immune system compromised far too long.

Again, they have said that while they think the second round would be beneficial, they just aren't sure. Time will be the most telling.

What happens next: We will go to clinic again on Wednesday and have his labs drawn again. This is to see, mostly, if he'll need platelets. But, if by some miracle, his counts are up and the ANC is over 1000, they MIGHT consider his going on to the second round. But, at this point they feel confident that the answer is No.

Provided this is the case and he doesn't go on, we'll hold tight for a while going to clinic twice a week to check if he needs blood or platelets. After about 2 weeks, about 60 days post transplant, they will decide if he needs to receive the rest of his frozen cells back. If his ANC is over 200, they may decide not to give them to him and allow his body to recover on it's own. The frozen cells would remain in the freezer for future use, if needed.

I can honestly say I feel numb, not sure what I should be feeling. I'm relieved, but I'm worried. As much as I was not wanting to see him go through that much pain and discomfort again, I feel concerned about whether one was enough. Only time will tell.

Another update on Wednesday.

God Bless.

Friday, September 17, 2004 5:47 PM CDT

Clinic today. Noah's white blood cell count was up a little bit to 3.1, ANC to 1600, which is good. His hemoglobins were at 7.3 and his platelets at 12 - which meant he needed to get both blood and platelets today. That made it an all day visit.

So, now we wait. He won't get any more GCSF over the weekend. We will go back to clinic Monday morning to have labs drawn again. They are expecting his counts to drop some but how far is the question. If he drops a lot, it will be questionable to go on. If he remains up, it looks good. But, on the other hand, since he wouldn't start until Wednesday, it could all change on Wednesday. For example, if he's good on Monday, he could drop to far by Wednesday. Or, if he's low on Monday, it's possible he could go up by Wednesday. So, while it seemed we would know one way or the other, it really now looks like we won't know, for sure, until Wednesday.

For those keeping track...yes, it's still his birthday. :)

God Bless.

Tuesday, September 14, 2004 5:12 PM CDT

And the saga continues.... Noah had good counts today. His white blood cells were back up to 2.7, his hemoglobins were at 8, and his platelets were at 33. This means he didn't need anything today. And, now, if his counts hold (meaning they don't drop significantly) at Friday's clinic, they will stop the GCSF. Then, we'll go to clinic again on Monday and if the counts don't drop much over the weekend (without the benefit of GCSF his body is doing the work) it looks like he is a go for the second round.

They re-checked the protocol and found that the 5.0 they originally said they wanted for his white blood cell count was incorrect and didn't apply to Noah's protocol. So, as long as he has good counts for the next 2 draws, we're going forward.

Alex spoke with Noah's oncologist today and got a little more clarity about things. First of all, as we suspected, they don't have the data to PROVE that 2 rounds/transplants is better, but that is the thought. They feel that the benefit of the second round is to catch any cells that are currently too small to be detected.

Also, we're confirmed that radiation is NOT in the plan for Noah at this point. They opted for this stem cell rescue procedure in place of radiation.

So, we wait a little longer. The final determination will be made on Monday. If he's a go, Wednesday will start the next admission and chemo. The transplant would be a 8 days following.

Noah is doing great. His walking is getting better, though he's still somewhat unsteady. This is especially apparent when he tries to pick up speed. But, today, we left his wheelchair in the room and he walked to the hospital and back. It's about a block each way, but he did it on his own. This is great progress! He was so proud when we got back he started yelling "I did it, I did it".

Noah had a great birthday, but he tells me it's still his birthday until he tells me it isn't anymore. Today, he won Bingo (on the Hospital channel) and when he called in(to win) and said his name was Noah, the Bingo Guy asked if he was the Noah at the Kohl's House. When Noah said yes, the Bingo Guy said he had heard Noah just had a birthday and turned 4. The Bingo Guy then sang Happy Birthday to Noah, on TV. Granted, it was just the hospital channel, but it was on TV and it was the Bingo Guy, so Noah thought it was really cool. The Bingo Guy, after all, may be the biggest star Noah knows. And, since he won Bingo, it was even that much more exciting.

As always, thanks for keeping Noah in your thoughts and prayers. God Bless.

Friday, September 10, 2004 2:02 PM CDT

We went to clinic this morning. Noah's white blood count dropped to 0.9 (from 2.2) on Tuesday. And, he required platelets today. He will be checked again on Tuesday, but at this point it's unclear if he'll be able to go on. The counts could be falsely low. Meaning that even though the numbers look low, the bone marrow is coming along. If the counts remain low late next week, they may do a bone marrow sampling.

During all of this back and forth with whether or not he can go on to the second round, I asked what ramifications there could be from only doing one round. The answer seems to be that they just don't know. At this point, they THINK that 2 is better, and St. Jude is testing 3, but they don't really have the numbers to say definitively that more is better. Logic would say that if they are testing 2 and 3 rounds, then 1 may not be enough. But, on the other hand, if they can't definitively say that more is better - maybe it isn't. We're prepared to go on to the next round, if his counts recover. But, we find ourselves questioning if it's necesssary or beneficial. Unfortunately, there are no clear cut answers. We'll have to see what next weeks counts bring. He only has 12 days left, so a decision will have to be made soon.

When we were heading into clinic, I say the neurosurgen's nurse and we kind of discussed what was going on and she seemed shocked to hear they were discussing radiation and felt that they may have been mistaken about that. Alex is going to call the Oncologist and see if we can get a clearer picture of what is going on. Sometimes it all leaves you wanting to bang your head (or someone elses) against the wall.

Noah's birthday is just 2 days away now. He's telling everyone who will listen. He tells them that he will be 'this many' and holds up 4 fingers and insists that they count the number of fingers. Cindy R, A.J. and Caleb are coming to spend his birthday with him. Needless to say, he's thrilled. But he's also looking forward to getting 'outta here' so he can have his 'big party' and can have 'everyone' there. It seems funny to think of his turning 4 as a milestone, but this last year has been a long and difficult one and with all that we've seen around here, every birthday will be a milestone and cause for celebration and thanksgiving.

God Bless.

Tuesday, September 7, 2004 3:55 PM CDT

Finally, a QUICK clinic visit. Noah's white blood cell count was up to 2.2 and his platelets were 33. In English, that means that he didn't need platelets today! That is the first time in weeks he's had labs drawn and held his own. They feel that the slow rise in counts may have been due to the infection and now that it's cleared up and he's off the antibiotics, his counts are starting to recover. Today, it was stated that since he still has 2 weeks, perhaps he will be able to go on to the second round. However, since this seems to change with every visit, we're just going to wait it out and see what really happens when the time comes. He goes back to clinic on Friday, so we'll see what his counts look like then.

A personal message from Noah: He wants his friends and teachers (and Miss Lisa too) at school to know that he loves them and misses them and hopes to be able to visit them soon.

God Bless.

Saturday, September 4, 2004 10:46 AM CDT

Yesterday afternoon we went to Stem Cell Clinic. Noah's counts came up slightly, from 0.9 to 1.3. While this is progress, it's slow. He also was low on platelets, again, so he needed to receive an infusion.

We will go to clinic again on Tuesday and Friday next week. At this point, at the rate his counts are coming up, they do not feel that he will recover enough to go through the second round. If this happens, they will give him the remainder of this frozen cells back in clinic (just like he gets platelets). Then, he would return here to the Kohl's House until his counts come up enough to be able to go home. They are still talking about adding radiation at the end of this procedure. We have not spoken with the oncologists about the radiation yet, at this point we've only heard it from his Stem Cell team.

In order for him to proceed to the next round, they want his counts to get to 5.0 on GCSF (which is a medication that helps bring his counts up). Then after he hits that number, he would be off GCSF for 5 days and they'd want him to maintain a count of 2.0 off of the GCSF. At the rate his counts have been climbing, they feel he won't make those numbers in time. The second chemo has to start within 50 days of the first transplant. We are currently at day 33.

On the plus side, he looks good and feels good. He does have a bit of a runny nose and is developing a cough but he doesn't seem bothered much by it.

He's still enjoying his time out of the hosptial. We go for walks just about every day and get to the zoo a couple times a week (now that he knows it's so close, he wants to go all the time). We're pretty limited in where we can go since we have the 30 minute distance limit, but it's just nice to get out.

On a very positive note, he learned yesterday that he will be able to spend his big birthday number 4 here at the Kohl's House rather than at the hospital. That was all he needed to hear to perk up. The director told him that they do birthdays up around here, so he's really excited. He's still planning his 'big party' that he'll have when he 'gets outta here'. He changes his mind almost every day. It's always fun when he says 'can we talk about my birthday party', so I can hear what his latest plans are.

God Bless!

Tuesday, August 31, 2004 5:23 PM CDT

We went to Stem Cell Clinic yesterday. His platelets and hemoglobins were extremely low so he had to receive both (as expected). His white blood cell count remains low as well and the doctor admitted that he's worried about it. The counts should have started working up by now, but the white blood count has remained at .9 for 9 days now. They will give him another week or 10 days, but if the counts don't start coming up significantly and the need for blood and platelets is not so regular, he won't be able to proceed for the second round. If that happens, they will just give him his stem cells back and wait for his counts to go high enough for him to go home. At that point, the treatment would be considered done. The doctors other concern was that the quality of them stem cells collected and frozen are not good, this would explain the diffculty in his counts recovering.

The other 'issue' we had yesterday was he had what appeared to be 2 petit mal seizures. These are the type that you kind of 'zone out' in mid sentence and after a few seconds, recover completely. This may have been a side effect of one of the antibiotics they were giving him, so we discontinued that yesterday. If it was a result of the antibiotic, we shouldn't see it again.

He seems like he's feeling well other than a runny nose.

Thanks for keeping him in your thoughts and prayers. We continue to be overwhelmed by the support you've all given us. God Bless.

Saturday, August 28, 2004 9:55 AM CDT

Great news! Noah's MRI was clear. This means that he's clear to move onto the next round. But, more importantly, it means that there are no signs that the tumor is coming back. They will do another MRI at the end of this next round and they will continue to do them every 3 months for at least a year.

He is feeling good and is starting to eat and drink more. He's enjoying being out of the hosptial and is in no hurry to return. He's talking about his birthday every day, making big plans for his 'hospital' party (on his actual birthday) and his 'big' party when he gets home. I think he's up to 4 pinatas and 3 cakes right now, plus cupcakes. Get ready Dave & Anita, because so far, he's picked Daniel's Den as the place he wants his 'big' party.

His counts are coming up very slowly, and actually dropped a little when it was checked yesterday. They aren't concerned, it happens sometimes, his body is just slow to start producing it on it's own. Monday, at his next clinic visit, they will give him both blood and platelets. That means we'll spend at least 6 hours at clinic Monday. It makes for a long day, but it seems so much easier to take knowing we can walk out the door when he's done.

Be Blessed.

Thursday, August 26, 2004 4:42 PM CDT

We got to the Kohl's House late Monday afternoon. It's very nice and it's wonderful to be out of the hospital. We've gone outside for walks every day. Today, Noah and I walked to a park where he played for a little while, then walked a little farther and found a fountain. Noah is quite fond of fountains, so this was quite a find. He splashed his hands in the water for a little while and all was right with the world!

He's starting to eat and drink a little more. Not as much as 'normal', but he's getting there. The Kohl's House has a fully equipped kitchen with 3 refrigerators, stoves, microwaves and dishwashers so we've gone shopping to stock up on some of the foods he likes best. He still has to be on a low bacteria diet but here we have the flexibility to offer him more choices. Last night he was thrilled to be able to have a frozen pizza. It takes so little to make him happy.

We went to the Stem Cell Clinic yesterday afternoon. We'll go 3 times a week while he's here at Kohl's House. He was low on platelets so he had to get an infusion. We haven't heard the results of the MRI yet, but they should have them at our next appointment wh