Surgery went well; "...better than expected" were the words the surgeon used. Now we wait. The big concern is how well Willem heals after the surgery. Willem's particular HLH is an anomaly so everything being done comes with a degree of uncertainty. For now we take it hour by hour and day by day.
Willem is alert and watching television. He is in a lot of pain and counting the minutes before he can press his morphine button again.
This is my first time back at the hospital since I left in September and I'm trying not to feel like he's still as sick as he was back then. Sleeping peacefully now... Such a beautiful boy.
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.
Tuesday, January 17, 2012
Surgery Day: Waiting for His Surgery Prep Room at Helen DeVos Children's Hospital
Not a care in the world and very anxious for the surgery. He is so excited at the prospect of being able to eat solid foods again and to be rid of the bag and tube pictured in the photo. We cannot go anywhere without the bag and tube. Not shown here is the backpack that holds the formula and feeding tube that also has to go with him everywhere.
Not A Care In the World and Singing
Willem was smiley, extremely talkative, and, when he didn't think we were listening, he was singing. When asked if he was excited about today's surgery he smiled and simply said, "yes." Willem could be seen skipping to the surgery prep room after being weighed. The boy is anxious to eat real food again and anxious to get rid of some more tubes. We are anxiously awaiting the same.
The news came to us yesterday that his third of six genetic tests came back negative for Familial HLH. We were also informed that Willem's six year old sister will definitely be Willem's bone marrow donor.
Thank you uncle Greg for driving up here from Chicago to be with us. We love you!
The news came to us yesterday that his third of six genetic tests came back negative for Familial HLH. We were also informed that Willem's six year old sister will definitely be Willem's bone marrow donor.
Thank you uncle Greg for driving up here from Chicago to be with us. We love you!
Monday, January 16, 2012
NO WAR FOR DADDY
My time away from my son has been an emotional challenge unlike any I have endured and I reached my absolute limit. With Willem's recovery reaching a plateau, and the upcoming surgeries, I requested to be sent home to be with my son and the Army obliged. No more war for me. The downside is that our family will now be struggling financially and my stress and guilt level increase. Nothing is ever easy: Go to war and suffer emotionally to provide financially or suffer financially to be home with my son. To the reader, I imagine that the decision is an easy one.
Surgery is tomorrow (January 17) at 1:10PM. It will take 3+ hours and Willem will be hospitalized anywhere between 5 to 10 days. This surgery, if all goes well, will finally allow Willem to eat real food. The surgery in a nutshell: Imagine the intestine as an S. The surgeon will cut a hole in the underside of the top part of the S and in the top of the middle part of the S and then connect the two holes. The upper left (side) part of the S is the damaged portion of the intestine that is not currently allowing food to pass so, after the surgery, the damaged area will be bypassed -- thus allowing solid food to continue through the system. To use the doctors' repeated statement: I am cautiously optimistic.
Still awaiting the results of Liliana's blood-work to ensure that she can indeed be the donor for Willem's bone marrow transplant. My poor babies. To think that my little six-year-old baby girl may suffer in an attempt to save the life of her older brother. And it just occurred to me that we never even asked her if she wanted to be his donor. 'Wonder if we should.
Surgery is tomorrow (January 17) at 1:10PM. It will take 3+ hours and Willem will be hospitalized anywhere between 5 to 10 days. This surgery, if all goes well, will finally allow Willem to eat real food. The surgery in a nutshell: Imagine the intestine as an S. The surgeon will cut a hole in the underside of the top part of the S and in the top of the middle part of the S and then connect the two holes. The upper left (side) part of the S is the damaged portion of the intestine that is not currently allowing food to pass so, after the surgery, the damaged area will be bypassed -- thus allowing solid food to continue through the system. To use the doctors' repeated statement: I am cautiously optimistic.
Still awaiting the results of Liliana's blood-work to ensure that she can indeed be the donor for Willem's bone marrow transplant. My poor babies. To think that my little six-year-old baby girl may suffer in an attempt to save the life of her older brother. And it just occurred to me that we never even asked her if she wanted to be his donor. 'Wonder if we should.
*************
THANK YOUs
*************
- Thank you to the Palmer Lake VFW 3915 Ladies Auxilary for their donation. Thank you for thinking of us and thank you for your prayers.
- Thank you to the Ada Bible Church. Thank you for thinking of us.
- Thank you Kathy, Tom, Emily, Grace and Andrew. Thanks a latte (sorry for the pun -- I couldn't resist).
- Thank you Mrs. Otto. Wow!
- Thank you Mrs. Meltzer
- Thank you aunt Milly
- Thank you Rick and Mary
- Thank you uncle John and aunt Cynth
- Thank you aunt Ami
Thank you everyone! To all of the contributors, throughout this entire ordeal, you have made our lives easier and more enjoyable in one way or another. As you can imagine, our lives have changed dramatically and the stress has been unbearable at times -- you have helped ease the suffering. Thank you.
Sunday, January 1, 2012
Friday, December 30, 2011
"Mildly Alarmed"
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.
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.
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
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