Bone Marrow Transplant

Originally Posted by Rebecca

One of the doctors just gave us a bit of great news. The DNA results of the biopsy are in and we were told that, of the cells produced, 95% are Chuck's and only 5% are Will's, so we may be started on the road to a successful transplant!!!! Praise God! (Results that show a higher percentage of host rather than donor cells would indicate a failed transplant.) To clarify, this does not mean that his bone marrow is 95% engrafted; this is just the first step. We still have a long way to go, but this is very encouraging! Now we need to pray for further engraftment and that Graft Vs. Host Disease (Chuck's cells attacking Will's body) will not occur.

On the virus -- As I type, the Cidofovir (antiviral med) is flowing into Will (who is very funny today even though he feels lousy)! So keep on praying!

Love to you all,
Rebecca

Originally Posted by Chuck & Rebecca

Will has moments that he feels pretty good and has little diarrhea, and more and more frequent moments he feels pretty rotten, usually after he eats much of anything at all. We are thankful that his sense of humor! He is scheduled for a scope (endoscope and colonoscopy) tomorrow, Tuesday morning at 10:30 a.m. Both combined should take about 1 -1 1/2 hours, and of course, he will be under general anesthesia. They will be taking several small biopsy samples that will hopefully shed more light on what is going on -- whether we are still battling infection or whether GVH is flaring up. We would appreciate your prayers for all to go well, including the prep work tonight --could be a long night. We also pray for very clear results, for wisdom for the doctors on how to treat Will, and for RELIEF and HEALING for the poor kid. Some very good news: today's white count is 5.8, ANC 4,640!


We have met many wonderful families here in the BMT unit and at Brent's Place, each with their own story to tell. At least two of the families are Christians, so we instantly "clicked" with them. One tough event we're all dealing with is that a brave, 12 year old boy, Kyle Lindgren, died Saturday. When we were admitted to the BMT unit, he was only three rooms down from us. His transplant was March 11th, and since then there have been multiple complications, causing him to be moved to PICU about 3 weeks ago. He had been on life support for at least a week when he passed away at 1:07 PM. Our hearts ache for his family, and we ask that you pray for them.

Honestly, Kyle's death and seeing so many struggle through so many issues has "rattled" us a bit. It is hard to not take on their story as our own. Please continue to pray that we will have PEACE beyond understanding, STRENGTH to get through each day, and that we will be filled with JOY each moment! We have so much to be thankful for. God has written our own unique story, and we can find hope and rest in that!

We love you! Thank you so much for all of your prayers and support.

Have a great day, Chuck and Rebecca

Originally Posted by Rebecca

Hello Faithful Warriors,

We have had a pretty good day, and Will has felt fairly well. He has continued to receive IV steroids, and more fun -- a new oral steroid was added tonight! Any of you reading this before bedtime, please pray for Will to have exceptional bravery while taking these pills. (He burst into tears at the sight of them).

One of the head BMT doctors, Dr. Quinones, is the doctor making rounds on the unit this week (beginning today) and he met with us short time ago. Meeting with him and discussing Will's diagnosis of GVHD plus adenovirus was kind of sobering for us. The doctors who made rounds this past week were not cavalier by any means, but somehow gave off a different "air" regarding the whole situation. (We also have to tell you that Dr. Q sounds pretty serious no matter what he is discussing!) Out of Will's earshot, of course, I asked Dr. Q, "How worried should we be?" He said, "You should be concerned." As Chuck has written before, the fact that he has GVH plus the virus makes treatment a balancing act. I'm just thankful these docs have had so many years of experience! Patients often do recover from these types of complications...it could just be a long road. He also mentioned that we would be in the Denver area much longer than originally discussed, which is not a great surprise to us, and frankly the last thing we want to do is go back to NM with any lingering issues.

So, I want to ask you to keep praying for much of what we have been praying for.....wisdom for the doctors, protection of Will's body from any other issues, healing of the GI tract, continued engraftment of the bone marrow. God has been so good and merciful, and we know He will continue to give us peace and strength while we watch His plan for Will unfold. We would love a quick "miracle" healing tomorrow...but it is all in His hands and in His time. I keep reminding myself that He knows every cell of Will's body!

Love, love, love you all,
Rebecca

Originally Posted by Chuck

3rd Wed update: The stomach X-ray results came back late this afternoon. Will has Pneumatosis Intestinalis, which is air in the wall of his intestines. Left untreated, this could lead to major damage, including damage to his colon. The doctors said his "bowels need to rest", so he cannot have any food or drink by mouth "for a while." He'll be fed entirely by IV, and all but a couple of his meds will be in IV form. In fact, now he's excited for the couple of oral meds he gets to take, so he can have a couple precious sips of water with them. We feel so bad for our brave little guy, but we're thankful the doctor had the foresight to order the X-ray, and that the results were very clear. By the way, the adenovirus has shown up in Will's blood again. As of yesterday, he has 1,300 copies of it, which is much less than before, but they're keeping their eye on it. Also, to continue combatting GvHD, the doctors are starting a new immunosuppression drug. I am amazed at how well they balance these treatments. Please continue to pray for wisdom for Will's doctors and nurses, and for his parents' sanity. Chuck

Originally Posted by Rebecca

Hi Everybody,

I know Chuck sent out an email with the facts, but I thought I'd add on just a little bit.
Feel free to delete if we are bombarding you with too much !

We are so thankful that Dr. Quinones noticed Will's tummy was a little distended yesterday! I think God was doing a little "doctor prompting". The period of time Will will be on "bowel rest" varies, but the doc said usually 1-2 weeks (although it took one kid 4 weeks). Last night, The Boy, who we had been nearly begging to eat for days, was lamenting that every TV show he was watching showed characters eating or drinking. Please pray this period of "rest" doesn't make him crazy and the time passes quickly. Truthfully, I think this is a "blessing in disguise". We all have been completely exhausted from the late night meds, running to the bathroom every few minutes, etc., and this will give a reprieve from all of that! Last night Will was asleep by 9:30 and has had no diarrhea and very limited nausea since yesterday evening! It seems like this will really give him a chance to heal.

It has felt like we have had one complication after another lately, and that can get pretty discouraging, so I asked Dr. Q last night, "Do you think he is going to make it through this?" He said that he and Dr. Giller still both feel that Will will come through transplant alive and well...it will just take a bit more time now. I know he is not God and really only God knows, but it was good to hear from a doctor who has seen so much during the 17 or so years he has been doing transplants.

Thank you again for your prayers! Will is in good spirits today and is such a trooper.
He loves Wills Warriors!

Rebecca

Originally Posted by Chuck

Will was able to go to bed early and slept very well last night. He's felt fairly well most of the day, and has been sitting in a chair playing Lego Star Wars on Wii for several hours. Although he's quite hungry, with no oral food or drink, he feels much, much better, and has had fewer GI issues. For the last few days, Will has experienced some other discomfort, so a sample of his urine was sent to the lab. This afternoon, one of the doctors came to the room, and, with hesitation, said, "We have some more news: Will has the BK virus in his urinary tract." The good news is that his Cidofovir infusion is tomorrow, so that will help fight it. When I told Will, he said " I could have told you that." A few weeks ago, he heard doctors explaining the symptoms of BK, and recognized them. He is not discouraged by any of this, and if you could see how good he looks today, you'd wonder why he's in the hospital. Thank you for standing with us! Chuck

Originally Posted by nikked

...

The hospital has a program where you can send an ecard to a patient, and the nurses print them out and bring the card to the patient. If you'd like to send one, his name is Will Crisler, and the website is Send a Cheer Card to a Patient - The Children's Hospital-Denver Area, Colorado, Rocky Mountain Region.

Thank all y'all for your continued prayers for this Little Man and his family!

Nicole

Originally Posted by Rebecca

WBC: 3.2
ANC: 2592
HEMO: 9.9
HEMAT: 29.3
PL: 30

Hey All - Quick update on our clinic visit today.
- X-ray revealed slight improvement of the pneumatosis situation. Diet still remains "clears".
- Dr. Giller was pleased with Will's counts and is especially pleased that he has not needed any transfusions since the end of Sept.
- We don't have to return to the clinic for 1 week! Next Monday labs will be drawn and the x-ray will be repeated. Or course our prayer is for even more improvement!
- Here is a biggie: Dr. Giller said that if Will continues to have 3 or 4 more "good" weeks, the New Mexico doctors are perfectly capable of handling his issues, and we can possibly go HOME!!!! BY CHRISTMAS!!! So we'll all just have to pray and wait and see! Just what you wanted for Christmas, right Dr. McKinnell?

After clinic, we came home, took afternoon meds and buzzed down to the zoo. We had a great time and practically had the whole place to ourselves. I am continually amazed by how remarkable Will feels!

With a thankful heart,
Rebecca

Originally Posted by Crislers

SWEET VICTORY TODAY!!
Went to UNM clinic with a nosebleed, we emerged this evening with amazing news. Thanks so much for once again praying us through this stressful event. Now for the Amazing News:

FIRST - the bleed stopped on its own after 15 minutes! No platelet infusion necessary.

SECOND - labs were drawn and the counts were unbelievable: 6.0 white count; 4800 ANC; 11.6 hemoglobin; 34 hematocrit; and 32 platelets. All these counts were among the best ever - with the white and ANC reaching near record levels! And the platelets had come up 10 since last Wednesday!!! We didn't think it could get any better when

the THIRD news came - Will's blood type is now O+!!! This means his type at transplant (A+) has changed and the new cells have overtaken the blood - he's TRANSPLANTED!!! Chuck's marrow rules.

We are so excited about all of this and are heading up to Denver tomorrow on a cloud of thanksgiving and gratitude. Hallelujah - our God reigns!

Originally Posted by Goal Numbers

W​BC: 4 - 10.5
ANC: > 1,000
Hemogl​obin: 11.5 - 14.5
Hematoc​rit: 36 - 47
Plt: 150 - 500