Tuesday, March 22, 2011

Children's Hero of the Month for Feb

Corbyn was chosen to be the Hero of the Month for Feb for Children's Hospital. He was awarded this award due to his attitude during all his teatments over that last two years, 7 ER trips, 3 hospitaliztions. We counted that he has had over 200 blood draws, over 50 infusion, over 50 office visits, he is about to move to his 3rd string of Beads of Courage.

The Beads of Courage is a program where the patient gets beads for every office visit, blood draw, IV, infusion, hospitalization, ER trips, speical treatments, and such. Basicly the beads are designed to help the kids be brave and show courage with the often times invasive treatments designed to help them get better.

The reason Corbyn has been reacieving these treatments is because he has a platelet disoder called Refractive Idiopathic Thrombocytopenic Purpura or ITP. Refractive means his body does not respond to most medications or treatments yet we still have to try. Idiopatic is unknown. A word or term I have come to loath. Thrombocytopenic mean low platelets and purpura means to have red or purple coloring under the skin due mini bleeds under the skin.

According to http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001562/ ITP is a very rare in which the immune system destroys platelets causing the body to kill the platelets normally found in the blood. In children ITP normally follows a viral infection. However, in Corbyn's case he has what is called rapid onset. Another wards he was not showing any outwards signs of being sick. His only symptom was being covered in bruises. By the time we got him into his peds doctor he had over 200 bruises which is an excesive amount of bruising. His initial platelet count at diagnosis was 1000.

The normal platelet count for a heathy individual is 450,000 to 500,000. Yes 500,000 and his was 1,000 not even 1% of the needed platelets to help with clotting. His body was covered in petechia.

On November 24, 2008 we were told he would likely self recover and not need any treatments. However, 3 weeks later we were Dr. H for the first time and getting a better idea of his diagnosis. 2 weeks after that he recieved his first IVIg infusion and were told that "most" children self recover within 6 months and with a few IVIg treatments and long term prednisone he would be fine.

A year later he went through Rutuxamab, a chemotherapy treatment that puts 75-80% of children into remission and he had NO signs of effect. November 24, 2010 we hit our 2 yr mark with ITP. At this point we still do not know what caused his ITP or how to prevent it in other children. The idiopathic part of this disease.

What we do know is the average rates adults with ITP is 66/1,000,000, the average rates of ITP in children is 50/1,000,000 and cases like Corbyn with chronic refractive ITP is only 10/1,000,000. Needless to say Corbyn is among the rarest of the rare class of ITP patents among adults and children combined.

Here is Corbyn Spending his Hero of the Month Gift Card at Wal-Mart. He had $100.00 to spend


 First on his list was 2 swords so he could play with his brothers and sisters
 Next was a remote control plane
 Sorry Spin just too Cool!!!
 Look at this set of 8 Water GUNS!!! The whole family can get in on the fun!
 Time to pay
 Swipping the card!
 Leaving the Store with my stuff!
 Gotta keep the reciept and loading the stuff
 Oh and look at these treats too!!
 Unloading the stuff from the truck!
 hehe I got it all in one load!
hehe I made it inside without dropping anything!

No comments: