THRiLL KiLL

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.

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