Hello... It's been a while, I know but I (daddy) have not been around to know all of the details so not much factual that I can add while away on training.
So... Today there was a family meeting with the doctors regarding Willem's situation and I now have a lot of facts that I have yet to absorb. I will probably not absorb them; I will probably just float on top of them for a while and hope to hit dry land at some point soon.
In summary: the 2nd of 6 genetic test came back negative for the familial form of HLH. This would be cause for celebration were it not for the fact that Willem has not responded to treatment as well as the doctors had expected. Willem is showing no sign that it's familial HLH that he's battling but he is responding to treatment as though he has the familial. It's all very technical and I just shut down mentally -- I got the gist of the conversation: it's serious.
Willem is also dealing with the damaged intestines that are not letting food pass through his entire GI so now he will be getting some serious and pretty invasive surgery on his intestines to bypass his damaged areas so he can, we pray, eat real food again some day soon (months). After the surgery he will be getting a bone marrow transplant but more on that later.
The risks and concerns: Willem is still on chemo because his HLH is still there and fighting to stay. He will have to be taken off chemo for a little bit so that the surgery can be done and he can heal. It is a delicate balance of time and healing that will have to take place so that the HLH does not make an aggressive comeback while he recovers from the surgery.
There's more to say but I shall leave that to future postings. Willem is a medical anomaly and is now known globally; something that comes with the added benefit of the greatest minds working on a singular task and with the added negative that, so mysterious is his illness, the greatest minds are working on a singular task.
In summary? Well... PRAY. Cross your fingers. Send good vibes. Visualize purple energy.
**********
THANK YOUS
**********
HUGE Thanks to the Branders for their very generous donation to Willem. Thank you. And a big thank you to Noreen as well. Thank you.
Thank you to all of our wonderful friends and family members who continue to express no limit to the sacrifice they are willing to make to help us and Willem. Thank you all.
Willem -- only days before he was stricken with HLH -- leisurely walking, straw in mouth, not a care in the world. A healthy 9 year old boy.
Friday, December 30, 2011
Monday, December 5, 2011
School, doctor/lab appointments, seeking normalcy, frustration, joy
It has been an interesting week. Our hero's "numbers" continue to track normal (hemoglobin, platelets, white blood counts, and ANC). The ANC number is a combination number, and when Willem was very sick it was 0 (zero). The first day we saw a positive number we were overjoyed as that was the beginning of his slow recovery. Liver, kidney, heart, lungs all doing their jobs beautifully.
He goes to school now from 8:40-12:15. Shannon Kemperman, his teacher has been very patient with us as we try and integrate Willem back into the classroom and at the same time not be a distraction. With some of his appointments we have had to pull him out a little early and Shannon has been great working with us. Academically he is doing well and not as far behind as we might have thought. The school has been awesome accommodating his situation. Thank you Tim Shaw (principal), Monica Kimball the keeper of the gate in the office, and Mrs. K, and all the others involved. We are appreciative of your extra efforts.
With Erin giving him his meds 2 x/day, daily feeds (formula) for 14 hours, and nightly saline for 9 hours, challenges have been many. Most have been with equipment, pumps, bags, hoses, etc. Last week Thursday morning I got a call from Erin early. The pump just kept beeping and had been through the night. There is a procedure to follow if this happens and she did it 2/3 times with no success. I did the same upon arrival with no luck as well. She went through 2 pumps which were delivered by the supplier, 3 formula bags, and a ton of frustration and angst!! Finally the rep/nurse came over and could not get it going either. Oh yea, Lili and Wyatt need to get ready for school and be fed. Tough tough morning for her to say the least. This is just an example of almost daily "situations". We can send a man to the moon and back.....
Willem does still throw up on occasion. Usually it's due to his other tube not draining the bile out of his stomach due to a blockage, gravity, etc. It happen yesterday out of the blue and mhe got very upset and angry. He has been such a trooper and great kid, that a mini breakdown is understandable and, quite frankly, we are surprised we have not seen more. He was fine after a hug and a talk. Kids are so resilient. He keeps bouncing back. He wants to eats desperatly and it almost to the point of all he thinks about.
He gets tired a lot and the doctors are aware of this with no concern. His hair is growing back and on the way to church yesterday Lili was wondering if it was going to come back thick and curly like it was before. We shall see.
We went to an event at the hospital put on and fully funded/sponsored by Delta Airline pilots and their spouses. Pillow pets were handed out. When they gave Willem his, a purple Unicorn which his sister has been asking for, he promptly just turned around and handed it to her!! WOW. He did not know any more were going to be handed out and he did this on his own. Lesson learned. As it turns out all three kids got pillow pets, pizza, pop, and cookies were served, Santa was there and good time was had by all. Thank you Greg Chase and all the pilots and spouses who were there. Really cool thing the public never knows about. Thanks to all.
This a big week. Labs and appointments with a couple of docs this afternoon, then a meeting Weds with the surgeon. Will keep you posted.
Keep thoughts and prayers coming- needed still and appreciated- thanks
He goes to school now from 8:40-12:15. Shannon Kemperman, his teacher has been very patient with us as we try and integrate Willem back into the classroom and at the same time not be a distraction. With some of his appointments we have had to pull him out a little early and Shannon has been great working with us. Academically he is doing well and not as far behind as we might have thought. The school has been awesome accommodating his situation. Thank you Tim Shaw (principal), Monica Kimball the keeper of the gate in the office, and Mrs. K, and all the others involved. We are appreciative of your extra efforts.
With Erin giving him his meds 2 x/day, daily feeds (formula) for 14 hours, and nightly saline for 9 hours, challenges have been many. Most have been with equipment, pumps, bags, hoses, etc. Last week Thursday morning I got a call from Erin early. The pump just kept beeping and had been through the night. There is a procedure to follow if this happens and she did it 2/3 times with no success. I did the same upon arrival with no luck as well. She went through 2 pumps which were delivered by the supplier, 3 formula bags, and a ton of frustration and angst!! Finally the rep/nurse came over and could not get it going either. Oh yea, Lili and Wyatt need to get ready for school and be fed. Tough tough morning for her to say the least. This is just an example of almost daily "situations". We can send a man to the moon and back.....
Willem does still throw up on occasion. Usually it's due to his other tube not draining the bile out of his stomach due to a blockage, gravity, etc. It happen yesterday out of the blue and mhe got very upset and angry. He has been such a trooper and great kid, that a mini breakdown is understandable and, quite frankly, we are surprised we have not seen more. He was fine after a hug and a talk. Kids are so resilient. He keeps bouncing back. He wants to eats desperatly and it almost to the point of all he thinks about.
He gets tired a lot and the doctors are aware of this with no concern. His hair is growing back and on the way to church yesterday Lili was wondering if it was going to come back thick and curly like it was before. We shall see.
We went to an event at the hospital put on and fully funded/sponsored by Delta Airline pilots and their spouses. Pillow pets were handed out. When they gave Willem his, a purple Unicorn which his sister has been asking for, he promptly just turned around and handed it to her!! WOW. He did not know any more were going to be handed out and he did this on his own. Lesson learned. As it turns out all three kids got pillow pets, pizza, pop, and cookies were served, Santa was there and good time was had by all. Thank you Greg Chase and all the pilots and spouses who were there. Really cool thing the public never knows about. Thanks to all.
This a big week. Labs and appointments with a couple of docs this afternoon, then a meeting Weds with the surgeon. Will keep you posted.
Keep thoughts and prayers coming- needed still and appreciated- thanks
Subscribe to:
Posts (Atom)