Good News on Ethan :)

DAY +8......WE HAVE AN ANC!!!!!!!!!!!!!!
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We woke to AWESOME news! His ANC was 192 at day 8, WOW! Or should I say UNbelievable! They expect an ANC around two weeks in a typical bmt fashion, but sometimes sooner, we'll take it. Even though I get that 'too good to be true' fear going. This time it feels different though since we already have some engraftment and we are only wanting to suppress him, get a boost, and we saw his donor cells increase with steroid alone, plus Cytoxin is designed to wipe the slate clean AND we don't care if it is donor or Ethan making red cells or platlets we just need donor lymphocytes!-that was a mouth full, sorry. Ethan ate pizza and chocolate pudding last night and did fine with his fluid restriction. This morning his outs were not as good as his ins, not sure why but he always gets puffy with blood products and no Lasix. We will watch him close, as usual.
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The ticket to getting out of here is above 500 on ANC three days in a row, no pain med.s, and I think that is it. It is too early to think about going home but we can dream. I can't wait for the kids to join us but we will not let them near him until they have been isolated for a while. We take NO chances! We just can not wait to be together soon, I pray they do not get sick or it could take a long time to pass around 4 children

Ethan

Please continue to pray for Ethan and that his body does not reject this bone marrow transplant. Here are a few pics of him....he is such a strong little boy!!

Ethan

Here are a few pics of Ethan, please continue to pray that his body will not reject the marrow transplant. He is starting to feel the effects of the chemo....poor baby boy.

Ethan's Story

Saturday, August 4, 2007 9:44 PM CDT
Ethan was diagnosed with this rare disease on August 1, 2007. He started getting sick on July 25 when it all began. He had a fever that sent us to ER, the next day in the Dr. office we learned all three cell linages were low. This caused total painic and a trip to Children's Hospital. We knew what the diagnosis was because 5 years prior his sister was dx with hlh. There is no TEST for hlh. Everything else has to be ruled out, like every infection or virus or malignancy.
This disease is a deffect in the immune system. Something, usually a virus or infection, starts the immune system attacking the foreign matter. Once it begins it can not stop or turn itself off. It starts to attack everything including the blood and organs, sometimes the cns can be affected and the brain. Ethan's liver and spleen began to swell and was all the way down into the pelvis and his liver was close to failing, he was yellow, his eyes were yellow, his skin tone was so pale. He received 3 blood transfusions, 3 platelet transfusions, and a broviac placed in his chest.
The chemo and steroids were started on August 2. The next day the swelling was starting to decrease, and he has responded great to treatment. The only cure is a bone marrow transplant or the disease will return, the next time with avengence.

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Please Pray for my cousin Ethan

- DAY 3
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Quick update: Yesterday, Cytoxin went well, it was a two hour infusion- we have to change his diaper at least every two hours and check to make sure the bladder isn't bleeding (another lovely side effect). His test dose of ATG went great and so we continued with the full dose. It was uneventful until it was over. He was really irritable but had a couple reasons-#1 no sleep because of so many vitals, and #2 no poop for lack of exercise. After the latter was accomplished he felt better. Until he had a slight fever-only 99.7 but it caused some rapid breathing and uncomfort. Once Tylenol took care of it he slept well. I was afraid his face was looking like Kristan's when she got these nasty drugs; very swollen. I will post on the photo page one of her when she was in the unit.
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This morning he looked SO good, Up talking and eating and playing. He looks like Ethan again. This is getting scarier as the days go on. The drugs are coming at him each day and bringing his counts down to 0. He will be susceptible to even his own body causing him an infection. This overly cautious germ-o-phobe personality we have will be good for this journey. He was hooked up to chemo from 10 am to 8:30 pm last night. Please keep the prayers strong! Pray THIS bmt is a success-maybe we left that "THIS bmt" to be successful in our last prayers; we must have only said for THE bmt to work.

Happy Halloween

The kids had a great time dressing up and getting loads of candy, they will be bouncing off of the walls for a full year now!!

Halloween at Re-Trans

We dressed up again at work this year and had so much fun, here are a few pics from the day.

Happy Halloween