give you a background...

my world changed when my son was born. When he was born he had tons of little red dots all over his body. They called these dots Pataki. They are caused when platelets in the blood fall below 30 thousand. A typical person's level is around 200 thousand to 350 thousand! They gave him a platelet transfusion and we thought everything was going to be normal... nope. My son started to get ecaxma (really painful rashes in all joints.. it causes the skin to split open) then they decided to test his immune system.. and that was really low. It comes to find out that my son has a disease called Wiskott Aldrich syndrome. It is hereditary and it only affects boys (females are the carriers). In a nutshell, his body was destroying platelets.

so the cure for the disease is a bone marrow transplant. No problem right? Well the doctors in ny kept on calling this one doctor in Seattle about the disease. This doctor knows everything about this rare disease, so we decided to go visit this doctor and look into getting the bone marrow transplant done out in Seattle. we do a preliminary visit and they run some tests out there in Seattle and then they sent us home. They wanted us to come back in 3 months and start the bone marrow transplant process.

In the mean time, we were in ny, the hospital decided that my son should be watched by the hematology / oncology team. So they had us stop seeing our local pediatric doctor and see them. They started my son up on a medicine. called ivig. in a nutshell its an chemical made immunes system. he got that every two weeks, along with blood draws and other tests. While this was going on, i was working from 7am till 4pm and my wife 5pm till 1am.. we never saw each other for long period of times...

as time went on my son became sick. His platelets kept dropping. the doctors didnÂ’t want to transfuse him, saying it could effect the bone marrow transplant. Stupid us we listened. My son would have nose bleeds.. and red dots all over.. his plateletÂ’s had fallen and were around 15 thousand.. twice we had to take him to the emergency room

because he wouldnÂ’t stop bleeding. there they would give him a blood transfusion and it would stop. well 3 months roll by and two days before we are supposed to fly out to Seattle, my son is being lethargic. He doesnÂ’t want to open his eyes, he doesnÂ’t want to play.. he just wants to lay. this is not normal. we call the hospital. they tell us its nothing to worry about and sometimes kids become that way when they are not feeling well.. after 5 hours of this we just took our son to the emergency room. we were in the hospital for about 15 minutes and my son had a grand-mal seizure.

They decided to do a catscan.. what had happened is my sons platelets had fallen to 3 thousand. he had a bleed in his brain about the size of an apricot. They told us he wouldnÂ’t make it. they said they could operate take out the blood, but more then likely the swelling would kill him. we told them to operate. my son was in the icu for 3
weeks. they put him in a coma so there was less brain activity and so he could heal.
Where the bleed was, was near the visual cortex. they had to cut it in order to remove the bleed. so now my son is
blind. he also became paralyzed on the left hand side of his body. After the bleed, its like they hit the reset button.. he had to learn how to hold his head up, he lost all the vocabulary that he had learned. and he would cry non stop.

after the bleed they were giving him platelets transfusions 4 times a day. and my son would just lay there. I ended up moving into the hospital.. i would go to work from the hospital... i would go home once every 3 weeks or so..

after the bleed new medical problems arose... he kept on having seizures, so he was put on medicine for that (that made him sleep all the time) he got high blood pressure. so he was put on medicine for that.. his heartbeat would skyrocket to 250 (normal is 90) so he got medicine for that.

a couple of months later... we had to remove his spleen. he was destroying the platelets faster then they could pump them into him. after the surgery we went 2 days with out a platelet transfusion!! woohoo.. that didnÂ’t last long.. as time went on he started destroying the platelets faster and faster. while all of this was going on... they were trying to find a match for the bone marrow.. they found some preliminary people.. but they needed to test them further.. our insurance covered the transplant... but not the testing... we had to come up with 35,000$ out of pocket. well we got the money.. and those people ended up not being a match..

we ended up waiting another couple of months and then they did find a match, it wasnÂ’t a perfect match but they said it would work. here was the catch.. once you reach a certain age you can not donate bone marrow anymore. this person had two weeks before their bday. they gave us to weeks to get to Seattle.. we packed up everything we could. i
ended up leaving my fiero behind (and later sold it). i drove across country in a Ryder truck, where my wife got to fly over in a private jet (my son couldnÂ’t be around people due to the lack of immune system) once we got out to Seattle, he had the bone marrow transplant. when they did the transplant, they put a Hickman line

in. what that is, its a tube that goes to the heart and is used for giving medicines and blood and all of that fun stuff... then he went through 13 days of chemo-therapy. to make a long story short, the bone marrow worked. he started making platelets a month after the transplant and has been fine since.. the ecxma went away and his immune system went back to normal... sorta

about 6 months after the transplant... things were going good... and then my son started run a temperature. Never in his life has he run a temperature (the whole lack of immune system) well... it was good and bad news.. the immune system from the bone marrow started working... he had an blood infection that was be caused by the line running to

his heart... and his body was attacking it (yea!) but the bad thing is his immune system now saw his red blood cells as an enemy.. and started attacking them... this is called hemolytic Anemia.

To combat this, they gave him a couple of rounds of chemotherapy... the drug they used would last in his system for a year, but at the same time he would have a reduced immune system... well the drug worked for about 4 months and then he started destroying his red blood cells again... this time they put him on a new medicine that he gets once a month.. and that is working.


now here is where it gets frustrating.. due to his medicines we are stuck home.. he cant be near people... we do cheat. we sometimes go to the mall just before it closes (when no one is there) but besides that we have no life.

we do not have family here in Seattle. we cant hire a babysitter (they would have to be a registered nurse) and i have heard to many horror stories about nurses abusing their at home patients.. my wife stays @ home and is always taking my son to therapy or doctor visits.

me i am starting to burn out... i work full time and i am doing school full time. i am barley making enough to support my family.. and i feel like i have no time with them. i have 6 months of school left.

Thanks for taking the time to listen to me rant.

..... what can I say? This thread brought 'tears to my eyes... I work in a Mental Hospital and I do
get my share of heartbreaking stories... right in my face.... but NEVER ever is it more heartbreaking
when a young one is the victim....

There is just no getting used to something like this... I'm a deeply religious person... and yes.... in cases
like this I can scream out "WHY?"... I have no answer...

All I can do is light a candle and prey... and that is what I'm going to do now... every child of God is worth it, imho... but especially the young & innocent...

TDR

That is heart breaking, I wish i could think of something to say or do to try and make it better.

Long Distance Hugs

Manly hugs of course.

in the wake of everything, all i can tell you is what i know youve heard the most.

Im sorry man.

ive been in hospitals next to little kids, and i know its rough, hell i was one of those lil kids in the hospital before, but that one tears the heart out man.

**** man, this is some major stuff right here. First off, you are a true man for supporting your family like you are right now. Many people would wimp out at a time like this. The self sacrifice you and your wife are doing for your son is amazing.

I think everything will pay off in the end for you. When your son is healthy, and he shall be, God willing, it will all be worth it in the end. You don't realize just how much respect I have for you now after reading this. You are a definite hero in my book bro.

I wish you, your wife and especially your son all the best. May it all work out for you and your family.

It may not be much, but know your son and entire family are in my prayers.

Man...
I dont see this as a rant,you and your family have been through hell.
I hope everything works out for your son,and wish there was some way to help out.

You've made it this far,just try to be strong.
my prayers are with you...

That's not a rant, that is a reminder to all of us. A reminder to not worry about the little things when life could throw you several curveballs in a row. Most people would have given up, I respect the fact that there is no limit to your commitment. You and your family are in my thoughts.

BA's right this aint a rant , and you got my sympathies Bro . It takes a real man to stick it out when something like this comes down the pipe. You got my deepest respect , a lesser man woulda cracked long ago.

You an yer family will be in my thoughts.

HTRN

Things will get better.........just gotta keep plugin away at it.........

Has your son regained some of the higher brain functions that he lost? Is he paralyzed for life? How old is he? Im sure your son will get better with time, we have the technology to make him better. My thoughts are with you.

thank you for all the support and prayers

here are some more details and updates..

when my son had the bleed he was 9 months old. he was walking and had a vocabulary of about 15 to 20 words...

in the past year he has made some major (to me at least) progress...

about 7 months ago, he stopped needing a feeding tube ( he had a tube that went down his nose and to his stomich and we used it for medicines and liquids) a coulple of months later he started eating stage one food... and right now he is eating stage 3 and is starting to take little chunks of meat. As for liquids, he has never been able to drink from a bottle. we got him to drink from a sippy cup.. but we had to hold it for him... as of last week he is now drinking from a straw!

he has been in thearpy for a couple of years now... he gets phycical, occupational (just like phyical but slightly diffrent) and speach thearpy from the school... and we take him to a private therarpy place and get all the same things as the school... so he gets toatal of 13 hours a week.

after the bleed he could not even hold his head up... (and the left side of his face drooped) as time has gone on he learned how to hold his head up. his face doesnt droop.. he got back control of his left leg.. and some of his left arm.. he can move his left arm, but he lacks motorskills in it so he cant pick anything up with his hand. other progress he has made is that he can roll over... if you hold his hand he will pull him self into a sitting postion.


as far as the blindness... well he can see sorta. at 1st doctors thought he coulnt see anything since when they ran his tests there was no brain functions... about 6 months ago they ran the same test and this time they got some responses... so they gave him glasses... as far as they can tell he can see 6 inches infront of him... no details but shapes... and the funny part the glasses must help... if we take them off of my son he cries.. he also now has accute hearing... he can tell when ever my wife or me gets near him by the sounds of our footsteps...

as for vocabulary .... he has about 35 words now.. he is still far behind... he understands alot!!! but i think it frustrates him becuse he cant express him self...


they think, he will be caught up by age 8... once we get over the speach hump =)

the lasting effects will be the blindness... and his left arm will be weak or next to usable.. only time will tell... and currently my son is age 4

thanks again for the support

Makes you realise just how lucky you are when you hear about the poor folks who have to put up with this kind of thing. It gives me renewed faith in human spirit; that just when things keep getting worse and worse in a situation like this people refuse to give up whatever the consequences on their own lives.

Trying to cope under such immense stress really shows what people are like on the inside. Your incredible commitment to your son shouldn't go unheard, so thankyou for sharing it with us. Everyone here is behind you.

Wow, you got me all misty bro...

First off, your a great man. Your son is so lucky to have a father and mother as you two.

not much more that i can think of to say other than you and your family are in my prayers.
Im happy to hear that your son is making progress.

woa I give you the right to rant all you want.

Also I hope in the long run your son gets better.

another small turn of events.... good but nerve racking...

my son has become stable... he has stopped destroying red blood cells.. and now we are starting to come down on the medicines that are supressing his immune system..

now that is great, but what is worring me is once he is back to normal, he will need to have a surgery.

when he had his bleed they cut open a part of his skull to releave the pressure...

well now since he is getting better they want to replace this.... i am just scared that the surgery might get messed up and he would loose what progress he has made... but on the other hand... he gets hit in that section he could die...

who knew parenting could be so stressfull!

Wow, it sounds like some great progress has been made from the little one and you as well!

Its awesome to see someone in your position staying as positive as you are, I can't imagine how difficult it must be!

Me and my family are praying for yours constantly, and know that you have a huge PCapex family backing you up!

Best of luck to you and your family

Slickcam

That has to be one of the roughest situations I have ever heard of, I dunno if I could be as strong as you have given the same situation.

A childhood (Family) friend had to go through bone marrow transplants similar to your son, and I know it was hell on the family.

I wish the best for your son, you and your wife are hero's in my book

I am sitting here reading this and I simply don't know what to say that has not been said already. I am very glad your son is getting better. I simply can not imagine what you have been through. I know a lillte about Hemolytic Anemia (my dog had it) and how nervewarcking and stressful it was for us keeping her stable. I simply can not fathom how it must be for you and your family when it is your son who has the disease. I am not sure I would be able to handle the situation as well as you have.

In the dictionary, next to the term "dedicated parents", that should be you and your wife pictured there. God bless you and your family. I hope everything works out and if there is ever anything that I can do from NY to help out, let me know.