Prayer Request for Bone Marrow Transplant | ABQ Family in Need of Support

[nikked]

Hey, all you Prayer Warriors. Wanted to pass on this prayer request. I haven't posted about this family before. I'm not even sure what the little guy has. Just know that all other treatments have not been successful, and the Dad is almost a perfect match for the bone marrow transplant, which I guess is pretty rare. GOD IS SO GOOD! They live in ABQ but are in Denver for the next several weeks preparing for the transplant. Below is the latest email with their schedule for the next several weeks. Appreciate your prayers!

*******************************

We are here in Denver, all installed in our home away from home and getting ready to have room service Mother's Day Dinner. Will asked that I write an e-mail to all of you asking you to pray for him as he checks into the hospital on Monday morning at 9:30. Nothing really dramatic happens tomorrow - just getting settled in a room and all of the labs, etc.

Here is the official treatment regimen:
Tuesday May 12 he begins the chemo with Cyclophosphamide.
That continues until the 16th, when Fludarabine begins.
On 5/19 Anti-T Cell Serotherapy (Campath 1H) is added in addition to the Fludarabine.
Both continue until 5/21 when only the Anti-T Cell Serotherapy is given.
Friday, May 22 Chuck checks in, has one liter of bone marrow extracted and it is transfused through the Broviac to Will. This is described as a simple procedure, much like a blood transfusion. Following transplant, the real threat becomes "Graft vs Host Disease" (GVHD) or rejection. He begins a GVHD Prophylaxis treatment.

Today Will asked that I please write to all his Warriors and ask you to pray for him. He specifically is dreading the side effects - vomiting in particular - and knows God has answered so many prayers that you all have offered for him, so he knows that you need to be armed as his warriors for this battle. He says, "Mostly pray that I don't throw up and that the treatment makes me completely better and that I don't have any breathing or wheezing problems."

Thanks for your prayers. We promise to write as often as we can and know that you are carrying us into battle. Love to you all - thanking you in advance for your loving care.

The reference to the breathing problems refers to a side-effect he has been having most of the time when he's had a blood transfusion.

Thank you all so much. I'll post as I get updates...

 

[tlag1986]

I'll be praying for the little guy, and his family.

 

[nikked]

Just went back through my emails. Will has aplastic anemia.

 

[Jolie_Paradoxe]

My church and I have started a prayer circle for him and his family

 

[nikked]

Thanks, everyone. I know I often read a prayer request and pray, but don't post. So, for all those praying, whether you're posting or not, THANK YOU!!!

Nicole

 

[raebates]

I've prayed for easy, uncomplicated procedures for both, along with quick and complete healing.

 

[nikked]

Well, here's an update from Will's father (the doner). God is good, and His timing is always perfect!! So, once I have an update on the new schedule, I'll pass it on. Thanks again for praying!!!!

Chuck here ... We had a very unexpected twist today, and you're not going to believe it. We admitted Will into the BMT Center and sat for a long time waiting in the room. As time ticked away with no Doctor's orders, the nurse explained that there might be a problem and there was. After a couple hours, the doctor came in the room in a somber mood and said there was a lab test he needed before starting chemo. He had originally been told that it had been done, but found out today that it was not. It's a test for Fanconi Anemia, a variance of Aplastic Anemia, which, if Will has it, requires them to dramatically decrease the chemo levels or risk severe organ damage. They immediately drew blood for the test (sent to Minnesota), and the results will take about two weeks.
So...... we're driving back to Albuquerque tomorrow. Originally, we were stunned and frustrated, BUT, in Will's words, "This must just be God's plan." Right on! When Sarah found out, she called and was so excited, although she's staying with wonderful friends, I think it would have been very hard for her to focus on finals knowing that we were gone and Will was going through all this. So when we come back to Denver, Sarah can come with us.
One friend pointed out that this was a great dry run, and she's exactly right. I think we're now much more spiritually and emotionally prepared for the transplant, so we're ready to go home for yet another intermission. I know God's grace and your prayers are the reason for the peace we have. We're ready to roll tomorrow morning, and I ask that you continue to pray that we won't be impatient or anxious. THANK YOU!
Chuck

 

[nikked]

Bumping for the morning crowd...thanks again!

 

[nikked]

Here's an update from Will's Dad...everything is still tentative:

The Director of the Denver Bone Marrow Transplant Center, Dr. Roger Giller, e-mailed us this morning. He is keeping in touch with the University of Minnesota, and Will's sample is being processed. They hope to have results the end of this week and will page/fax their report to him as soon as it's done. He'll let us know when he receives the results. In the meantime, they have set TENTATIVE dates based on the assumption that the genetics studies come back this week and are normal.

Will's admission date in Denver is set for Friday, 29 May, and my bone marrow harvest date/time is 0730, 9 Jun. Based on this, we plan to drive up on Wed, 27 May. We are thankful for this extra time we've had back home. Sarah is doing very well with her finals. We've taken care of several things and seen people we weren't able to see before. We feel MUCH more prepared.

Again, THANK YOU ALL for your prayers and support. We feel very much at peace and we know it's no accident. Through you, God has blessed us so much. And, Will has grown and shown AMAZING and INSPIRING faith and strength. Our simple request is that you continue to pray for God's will for God's Will.

Chuck

 

[kristina16marie]

Praying for you!

 

[twinchefs]

Sending prayers

 

[pampchefsarah]

I'll be praying for Will and Chuck, as well as Sarah and Mom (whose is the only name not mentioned anywhere!). Do you know the age of Will?

 

[nikked]

I'll be praying for Will and Chuck, as well as Sarah and Mom (whose is the only name not mentioned anywhere!). Do you know the age of Will?

Hi...the mom's name is Rebecca...sorry about that!

Will is elementary school aged (home schooled), and somewhere between 8 and 10, I believe. I'll find out for sure though.

 

[tlag1986]

Sending prayers daily.

 

[nikked]

Hi, Just received this from Rebecca (mom). Thank you all for your continued prayers!

Hi All!
We are getting ready to take Will for Admission to hosp. We are OK, but our sweet little boy, who is trying very hard to be brave, is scared! Who wouldn't be?! Thank you for praying...we'll send out more later today.

LOVE YOU ALL!!!!!! Rebecca

 

[nikked]

Here's an update with some specifics. Thanks for praying!!!

Family and friends,
Chuck here, writing from the hospital room. Thank you for your prayers today! Will feels much more calm, and he is facing this head on--I couldn't be more proud of his attitude. I am thankful for the peace God has given him and us, and for your faithful prayers and support.

He was admitted this morning and we had a number of formalities to take care of. The doctor also gave him another exam, and all systems are go. He just received a unit of platelets and is getting a unit of packed red cells now. He'll receive IV fluids all night and the chemo starts tomorrow at 10:00 MST. Early tomorrow morning, probably around 0730 or 0800, he'll have a couple procedures done, one of which will make him uncomfortable for the entire 10 days of chemo--please pray for peace for him.

He's actually excited that he'll likely lose his hair, but as we mentioned previously, he dreads the thought of vomiting, so please pray that he won't get sick to his stomach. We will hopefully update the Caring Bridge web site soon. Thank you again so much!
Chuck

 

[nikked]

Another update from Saturday night (just received it myself).

This came late Sat. night ~ an update on Will Crisler............

It is Day 11 in the countdown to the BMT. Will began the Cytoxan today, and accompanying drugs to fight against nausea, along with oral hygeine regime, a catheter, and a pack of red blood. All in all, the kid was a real trooper and he did not experience any adverse effects. In fact, when the one-hour chemo was 2/3 finished, he asked, "When do they start the chemo?" Your prayers were answered because he didn't even begin to worry about vomiting and stayed nice and steady all day, even when at 5:00 pm they had to replace the catheter with a new one.

Dr. Giller told us today that "This kid is coming in with about the best chances I've ever seen - You'll breeze through this, Will." WOW. He also said, "This is the funniest kid I've ever met." After a pause, he added, "Actually, you are all funny." We - naturally - laughed and said, "Well, that's got us through some really tough times. That's just who we are." Dr. G ROCKS!!!

So, prayers are needed tonight for A) A good night's rest for the parents - especially the one who gets to sleep on the bed of steel at the hospital. B) For Will to continue to do well, for his courage (which is remarkable) and for minimal side effects.

Those of you who have gone through, or had loved ones go through BMT know what we're facing. We've been prepared, but also know that realistically we don't know until we know. So, pray for us all - to be brave, strong, and kind to each other as we all respond to the emotions differently. Your love and prayers mean everything to us.


Standing with Him, with you, for WILL,
Melanie (Will's grandmother)

 

[nikked]

Update...thanks for your continued prayers!

I hope you don't get tired of us! I just wanted to quickly report that I arrived at the hospital about 1 hour ago, and Will looks and feels GREAT!!! He is funny and talkative...just like the Will we all know. We know how things can change, but we are all so thankful for this piece of normalcy!! His 4th dose of chemo is underway and so far so good! I never dreamed he would look this good 4 days into chemo. Thank you for praying, mighty warriors!

Rebecca

 

[nikked]

Update on Will...

The countdown is continuing and our thoughts are turning more and more to next Tuesday. We have had such magnificent answers to prayers thus far, and are anticipating God's mighty assuring hand on all aspects. Stand with us, dear ones, your love and comfort are so felt.

Yesterday was phenomonal - and if you checked Caring Bridge, you saw that Will went down the hall to the exercise area and took a little ride on the exercise bike and the treadmill!

Today Will is again "lively" and full of good humor. He is doing well, appropriate counts dropping, bladder settling down, urine clearing up, tolerating this level of chemo very well so far. Please pray that he can sleep more - he isn't sleeping well and it is manifesting itself in his sometimes cranky moods. As always pray for minimal side effects (and they can arise from the chemo even after the transplant). The rest of us are doing well. Will is excited to see his "Pappy" - coming on Saturday. He is thinking that by the time Pappy comes he will be bald. So far no hair has fallen out but he keeps hoping!! Strange one, isn't he? Love to you all - your prayers mean so much to us!

Melanie

 

[nikked]

Here is Will's Caring Bridge site for those who like updates directly from the source...

http://www.caringbridge.org/visit/WilliamCrisler

 

[pampchefsarah]

Thanks for the link, Nicole, but I'd rather read the updates from you, and here with our CS 'family,' so we can all pray together.

 

[nikked]

TODAY IS THE DAY! This was sent this morning from Melanie (Will's grandmother)...As she said "start your engines and get praying!

Family and friends,
Chuck passed his screenings this morning, Will has received his last ATG, and we're holding on. The results from the BK Virus test are not back, and may take 5 days. But, we're moving on regardless. Most important of all, we are all calm, feel peace, and are just "wanting to get it over with."

Chuck went for the pre-donation exams this morning. After his "donation" if he has to stay the night, he will be right here on the 7th floor - outside of the BMT Unit, but right here. I keep thinking, "Please let him stay the night." I don't know what could go wrong, but...our track record isn't so great.

Our prayer needs are the same: things to go smoothly, peace for all, good night's rest for everyone, good results, and now the big one is: NO REJECTION, NO GRAFT vs HOST DISEASE. These will continue for lots of weeks, so start your engines and get praying.

Will is in amazing spirits and is counting the days wondering if his hair will fall out in the next two weeks. He sure hopes it does.

Love to all of you - OF COURSE, we will keep you updated with all the latest information.

Melanie

 

[nikked]

Everything is going well...keep on praying!!!

Bone Marrow Transplant Day!.......................

As I write, I am flooded with joy at what I am witnessing. The medical staff has been saying all day that after all the chemo, the BMT is "anti-climactic." They are wrong - A miracle is taking place right before my eyes. I look at the tall IV pole and see my son-in-law's red red bone marrow flow down a tube into his son. Praise God from Whom All Blessings Flow. Life giving life.

We are at the "halftime" of the BMT. Because of previous reactions and the viscosity of Chuck's marrow (thick), Will is being transplanted slowly with a little break between the two bags of marrow. He has played computer games, watched cartoons, and is currently watching a Star Wars Clone Wars DVD (a gift from our HOTEL!!!). A nurse is sitting at his bedside throughout the procedure to make sure the flow is perfectly even and that no cells are damaged in the process. Of course, she is also on the lookout for hives, red blotches, etc. She's been here two hours and gets to come back for two to three more. Fortunately she is very nice and doesn't seem to mind our twisted humor!

Chuck is safely tucked away next door with "Nurse" Sarah at his side. He's eating a cheeseburger and fries at last report.

More after round two -
Love and keep those prayers and praises coming,

Melanie

 

[nikked]

Prayers are really needed right now, folks. Everythings going okay, but Will is having side affect issues...

From Will Crisler's grandmother............

Although Will rallied yesterday and finished the day in a very normal state, he woke up this morning with nausea again. He has been given meds, but has been sick twice and is feeling rotten. We all know what he does NOT want to do, so we are asking you to stand in the gap again and please pray that this bout of nausea passes quickly. (For you medical people, he was given Phenergan and Zofran - don't mind our spellings, please).

His doctor assures us that everything is going perfectly. The red counts are maintaining normal levels and the white counts are maintaining minimum levels. The liver and kidney functions are great with no concerns at all. There are no flags anywhere in his count levels that aren't supposed to be (like the White Cell count of 0.1 is expected and not a red flag).

Please pray for Will's ability to take the oral meds while he is feeling "punky" It is perfectly understandable why he doesn't want to swallow anything, but we know all too well it is unavoidable.

Thanks for you love, concern, Caring Bridge notes, and most of all prayers,

Melanie

 

[nikked]

Things are looking up...keep on praying! Thanks!

I read today's guest book comments to Will--thank you so much! He has been feeling loads better. He even had some small bites to eat. He's pretty much himself and back in the ornery category. We had another tornado warning this afternoon and had to evacuate to the hallway again. Since Will was still feeling a little wonky at that time, he got to use a wheelchair, which he really enjoyed. In fact, he was trying to zip ahead of me pushing the wheels, and I had to reign him in because he was still connected to the IV pole. Thankfully, the tornadic activity stayed to the north of us, but it's always exciting. Chuck

 

[nikked]

Things are going well, but there is a concern about possible issues with his liver...keep on praying!!!

Will's doing well today. He's still battling nausea, so the nurses are continuing to keep a number of meds on board. His attitude is great and he is making us laugh all the time. A funny story from Saturday...the nurse had started a transfusion of platelets and clamped the hose to regulate the flow. She left for a few minutes and when she returned, she was surprised that the transfusion was done already. She checked the clamp and discovered it had been completely released. Will confessed that he had released it to achieve maximum transfusion speed. I guess that's what happens when a ten-year-old who closely monitors his health care reaches his 62nd transfusion...he won't be doing that again. The doctors are keeping an eye on his liver function. A couple of the numbers they monitor are elevated, and it could indicate a possible problem. At this point, they're not overly concerned...it could just be a reaction to chemo and other meds. Chuck

 

[nikked]

Here's an update...

Will's doing well today. He continues to have nausea each day, and it's particularly hard when it happens during meds. He has to take a large number of meds by mouth each morning and afternoon, so please continue to pray he'll be able to take them without any problem. Also, please pray he'll be protected from any virus or infection. One interesting thing that I did not think about till the doctor explained it yesterday...Will and I are different blood types, so one of the first indications that the bone marrow has engrafted is that his blood type will change to O Positive (my blood type) instead of A Positive. Today marks one week since the transplant, so we'll hopefully see signs of engraftment in the next 2 weeks or so. Thank you again for the wonderful prayers and guest book comments. Chuck

 

[nikked]

A good report...

Will had a good night. He bravely took all his meds without a single problem (and very little nausea) and went to sleep exactly on schedule. He's still sleeping, and I am hopeful for a good day. Will's room is on the 7th floor and has sweeping views of Denver and the Rocky mountains, so I am enjoying this beautiful Colorado morning! Again, thank you for your prayers and the funny and encouraging guest book entries!
Chuck

 

[nikked]

Thanks for your continued prayers...

An update from Will Crisler's grandmother............

Will is "hanging in there," holding his own, and we have a lot to be thankful for, even if he did get sick once last night. Even that has a good result, because he had been feeling punky all day and then it suddenly was over and he felt good.

We have a TOP TEN list of praises - 1) he hasn't vomited since Monday 2) he has no fever 3) he has no signs of any complications 4) he hasn't had a platelets infusion for 36 hours 5) his tests have not shown any signs of infection 6) he is maintaining his weight 7) he is getting all his hydration orally now and not on the IV 8) he can still make jokes 9) he knows every med he takes and keeps the nurses on their toes by asking lots of questions -like "Are you supposed to pre-med before cyclosporine?" and "Make sure that goes in the white tube, not the red tube," and MOST IMPORTANT 10) he can still play Nintendo, watch TV at the same time, AND never miss a word of conversation we're having!!!!

But, really, most of all our praises are to our Heavenly Father for His continued care over all of us...made possible by your constant prayers and vigilance in keeping our needs before His throne. It is comforting beyond all understanding that when any one of us gets a little "down," we only have to remember your faithful dedication to our family through your prayers and we are bolstered up and ready to go again. You really have no idea how much you mean in our lives and we all thank you sincerely for standing in the gap for us. If you visit Caring Bridge, you will see that almost 2700 visits are logged - that is a visible constant reminder to us that we are being held tightly by you. I don't know how to thank you...but thank you. You and all those you have told about us have truly earned the title of "Will's Warriors."

Love to each of you, Melanie

 

[nikked]

Here's an update from Will's Dad, Chuch (the donor)...

Will woke up a little early today and said he feels "great." We're still keeping an eye on his blood counts. No huge increases yet, but a couple of the counts have inched up since yesterday, and his platelets only dropped by 2. They've been dropping by 10-15 per day. So, as of now, no need for transfusions. Chuck

 

[raebates]

Thanks for the update.

 

[nikked]

Another update (on Will and Julien)

Two things from the Crislers..............

1) Thank you so much for praying for Julian! I saw his dad, James, a little bit ago, and Julian is actually improving little by little. Every time any of us sees James he says over and over again how much he appreciates the prayers you all are lifting up on his family's behalf. You are such precious encouragers!!

We definitely have a "mission field" up here, and it is exciting to see God's grace and strength being extended to others too! So keep on praying. Julian still has a huge, huge hill to climb, but we know nothing is too difficult for Him.

Love to you all, Rebecca


2) For a number of days Will has had diarrhea, and today, the nurse said he has tested positive for the Adenovirus. We haven't talked to a doctor about it yet, so we don't know the implications, but Will is now in isolation again. We ask that you pray about this, and for our anxiety.

Thanks! Chuck

 

[nikked]

An update from Chuck...

Will and I were up many times during the night, so it wasn't as restful as we'd like, but we're up and feeling good. He's eating well this morning, and the nurse promised he can be unhooked from the IV pole for a little while if he drinks plenty of water. Here's even bigger news: although he received a platelet transfusion during the night, white cell count has increased from .1 to .2--this is HUGE! Thank you for your steadfast prayer! Chuck

 

[nikked]

An update from Melanie and Chuck...

Howdy from DENVER -
It's been a few days since I've written and these days have been mostly uneventful, with minute upward changes in the white counts and ANC. Will has had high moments when he has the whole staff laughing (and playing Monopoly with him). Then there are other moments of severe nausea, diarrhea, and vomiting. He is pretty much a trooper with all of this, with meds remaining the biggest challenge three times a day. Sometimes they go down really well, but when he is not feeling well, it can be rough.

Yesterday the med team decided to help Will's white cells with a little boost of GCSF. They were moving in the right direction, but s-l-o-w-l-y. There are two affecting factors 1) Aplastic Anemia patients are typically slower in engrafting than leukemia or cancer patients. 2) The diarrhea he is fighting (adenovirus) is sapping some of the cells because as few as there are, they are trying to fight off the virus. It's rather a Catch 22 because the virus can't improve until the white cells improve and the white cells are being depleted in fighting off the virus. 3) In addition to all of this his blood cultures did test positive with the adenovirus, so that means it may take a while longer to build up white cells. So...all this to say that they have begun GCSF therapy, which is a white cell stimulant. They also decided to change from oral Cyclosporine to IV because the level is not being sustained in the therapeutic range consistently. Dr. Giller also said that the gastro issues remain a big concern and may necessitate adding another anti-viral to control it, since the blood culture was positive.

What this all means is this: After 1 dose of GCSF, the WBC (white blood cell) count soared from .2 to 1.0 and the ANC went from 142 to 853. This is great, and if the ANC count remains above 500 for three days in a row, they will begin discussing release to Brent's Place. BUT...the big factor here is the diarrhea - it has to get under control. SO, OUR PRAYER IS THIS: The GCSF gets the white cells boosted enough to secure engraftment and for the diarrhea to disappear (along with the other gastro symptoms of nausea and occasional vomiting).

Chuck has done an excellent daily job of updating Caring Bridge; http://www.caringbridge.org/visit/WilliamCrisler so you can check it whenever we don't get a regular e-mail sent. Some new pictures may be going up very soon.

Melanie

Will's waking up a little slowly today, but he is diligently building a new Lego Power Miner, model 8961, that I got him yesterday. His white count improved to 1.2 with an ANC of 1056, so we continue to be encouraged. Chuck

 

[raebates]

Thanks for the update.

 

[nikked]

An update from Will's mother, Rebecca...

Hi Friends and Family,

Happy Independence Day! I pray that soon Will will be able to celebrate his own independence day - independence from this hospital and Aplastic Anemia!

I know that you all are diligent prayer warriors, and I am writing to ask for ramped up prayer for Will to overcome this Adenovirus! Truthfully, he feels pretty awful most of the time between nausea and diarrhea, and I know he is weary (but still so very brave)! From what the docs have said, we could potentially be discharged to "Brent's Place" this week, but not until these GI issues have improved. So we ask you to join us in praying for this to occur, and for an extra measure of strength until it does!

Will's bone marrow biopsy has been scheduled for 2:30 p.m. on Tuesday (Day +28), and we'll send out more specific requests and info regarding that later. This biopsy should give us a true snapshot of what is occurring with his marrow, engraftment, etc., so we are looking forward to "seeing" what is really going on in there!

Thank you for praying! Have a great weekend!

Love you, Rebecca

 

[nikked]

An update...please be praying for a bone marrow biopsy this afternoon...

Will's feeling well today, AND, his white count is 3.7 with an ANC of 3,145! After today's dose of GCSF, they're going to back off to every other day. This afternoon at approx 1500, Will is having his first post-transplant bone marrow biopsy. Please pray that this will give the doctors a clear status of his engraftment. The biopsy will be done in the clinic just down the hall outside of the BMT ward, but Will's looking forward to leaving the room again. He'll be sedated and it normally takes about 90 minutes start to finish. The complete results usually take a few days. Chuck

 

[raebates]

Praying, Nikki.

 

[nikked]

LOTS OF PRAYERS NEEDED! From Rebecca, Will's mom:

Hello All,

We have been on a rollercoaster these past 24 hours, and Will really needs your prayers! As Chuck posted on our caringbridge site yesterday, we were told that if things continued to go well Will could be discharged Monday, and we could move to Brent's Place. I dropped off the paperwork and toured Brent's yesterday afternoon. As our day and evening progressed, Will's diarrhea increased dramatically and yet another blood culture was drawn. We got word today that the cultures revealed a very high level of the adenovirus in his bloodstream. (11,000 copies? - I think) for you med people out there). The doctors have decided (and we agree!) that Will's body needs big-time help in overcoming this virus. (I think we mentioned before, if left unchecked it can cause major problems - pneumonia, serious bladder issues, hemorrhagic diarrhea, hepatitis, etc.) So tomorrow (Friday) Will will be given a dose (via IV) of an antiviral medication called Cidofovir - FDA approved for use in adults but has been used here in the BMT unit on children rather successfully. The med. is administered once a week, until no longer needed. Sometimes only one dose does the trick.

As you can imagine, our BIG prayer request is that this medicine will work, and Will will emerge as victor over this virus soon! We are so thankful and amazed that he has remained fever free and has thus far not had any other complications listed above, so we keep petitioning the Great Physician for His protection! We know that God is capable of healing Will in an instant, and we ask for patience, strength, increased faith and peace while we wait to see what tomorrow brings. We also know that God loves little Will even more than we do and right now is holding him close and carrying him through.

On another note, we have some results of Will's biopsy, and they show about what is to be expected....low cellularity but with all three blood components being produced, which is good. We should get the key result tomorrow: is Chuck's engrafted marrow present (GOOD!) or has Will's taken control (BAD!)? We pray for the answer of Chuck! We could use a little ray of hope about now.

We love you all, precious people! We will imagine many prayers being lifted up on our behalf tonight!

Rebecca

 

[nikked]

bumping for the morning crowd...

 

[nikked]

Here's an update from Rebecca (mom)...

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

 

[nikked]

Here's an update from Chuck and Rebecca. Things are a little hairy right now...your prayers, especially for tonight and tomorrow morning are appreciated...

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

 

[nikked]

Here's a sobering update from Mom...please keep on praying!!!!

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

 

[nikked]

The docs think they've pinpointed to main problem with Will's tummy issues...here's the details...thanks for praying!!!

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

 

[raebates]

Thanks for the update.

 

[nikked]

Another update...this one from Mom...it's a little more personal, a little less clinical...Follows is another medical update from Dad...Thanks for your prayers!!!

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

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

 

[pampchefsarah]

Thank you, Nicole, for the continuing updates. I will keep The Boy ;-) in my prayers.

I think he'll get used to the no oral food or drink after awhile. God made our stomachs capable of adapting, given enough time.

Wonder if Will will be another Doogie Howser, and grow up to be a doctor because of all this.

 

[ChefJoyJ]

I just saw this thread and read through it. My heart aches for this family and all they're going through. But I am so happy that they know that God is there, this is in His plans (although they may not know why), and they are seeking His peace and comfort.

Will and his family will be in my prayers daily. Please continue to keep us updated. Thank you.

 

[nikked]

It's been a long time since I've posted an update, but things have been going (overall) pretty well until now.

A quick recap:

Will was hospitalized longer than anybody expected or wanted due to a virus (shortname BK) and something called pneumatosis, which basically is air trapped in the intestines (at least as I understand it).

His overall transplant numbers have been steadily climbing, and two weeks ago, he was finally well enough to be released to Brent's Place (a place to stay kind of like a McDonald's House).

Unfortunately, on Friday, his tummy was extended again, and on x-ray the pneumatosis was back. So he was readmitted, NPO (no food or drink orally). Apparently, his numbers have also taken a significant nosedive, but I don't have specifics on that yet.

To top it all off, Mom is getting sick, and will probably shortly be banned from the hospital. Family is flying in to help stay with Will.

So, lots of prayers are needed.

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 http://www.thechildrenshospital.org/visit/gifts/CheerCards.aspx.

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

Nicole

 

[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 http://www.thechildrenshospital.org/visit/gifts/CheerCards.aspx.

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

Nicole

I'm sorry...I meant to correct the name before I posted, and forgot. It's William Crisler for the ecards...you have to use the full name.

Thanks again!