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

[pampchefsarah]

Thanks for the link Nicole. It's nice being able to 'personally' touch someone I've been praying for.

 

[nikked]

Quick update...

Mom (through a series of unfortunate events) was finally able to be tested for the flu. WHICH SHE DOES NOT HAVE! Thank God. But, because of her symptoms, she will not be able to return to the hospital for a few days.

Family has flown in to stay with Will. They still haven't posted the updated numbers, so all we know there is that they are down.

Thank you all so much for your continued prayers for this family.

 

[nikked]

Here's an update on Will...things are looking MUCH better!

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

 

[Tropicalburstqt2]

I spent my summer working on an adult Bone Marrow Transplant Unit in Morgantown, WV. I have seen what these patients go through & my heart aches for this family but praise God that Will is doing better & they are looking at sending him home for Christmas!! That is so awesome!!

 

[pampchefsarah]

Nicole, your timing is impeccable. I was thinking about Will earlier today, and was going to post asking for an update!! How wonderful to hear he is improving. Now to pray for the best Christmas present he and his family can receive this year.

 

[nikked]

Here's an awesome update on Will Crisler. He's been here in ABQ for the week, heading back to Denver (transplant home) tomorrow...an urgent prayer request was sent out earlier today because he had a nose bleed, so they went into UNM...here's the update from that!

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!

Here are the goal numbers...this is the closest they have ever been!

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

Thanks again for your continued prayers...

 

[pampchefsarah]

Prayers of thanks and praise being sent up!! What amazing news. We appreciate your posting.

 

[Gina M]

That is awesome news Nicole! May Will continue to get stronger every day

 

[nikked]

I'm not sending every little update, but this was such a great update, I had to share!

Hello, everyone! I just received a phone call from Dr. McKinnell, who was glad to be able to report good news re: Will's labs.
WBC: 3.9, ANC: 2340, Hemoglobin: 12, Hemat.: 35, Platelets: 41! Looks like the virus he fought is no longer impacting his marrow! Bike ride, here we come! Dr. M did recommend that we have someone run alongside Will as he gets accustomed to riding again -- it has been almost 2 years since he has been able to ride! (I vote for Chuck as the "runner". Clumsy me would probably cause an accident.) Anyway, just wanted to pass on the news. We are so thankful! Love, Rebecca

 

[nikked]

Bumping for the evening crowd...

 

[nikked]

A great update!

WBC: 2.8
ANC: 1120
Hemoglo​bin: 13.1
Hematoc​rit: 38
Platelet: 59

We're very excited and thankful ... all of Will's counts went up. We looked back through his counts, and his Hemoglobin, Hematocrit, and platelets are the highest they've been (w/o transfusion​) since he was diagnosed in June 2008. The appointment went well, and Dr. McKinnell thought he looked great and that his stomach sounds less hollow. Rebecca and Will were very glad to see Dr. McKinnell. He has a gift of making each patient and their family feel like they are his favorites. Thank you for your continued prayer and encourageme​nt, and we ask that you continue to lift Gatlin Clark and his family up in prayer. Chuck

 

[nikked]

An AWESOME update...with one exception...will post again when we have more news...

WBC: 3.6
ANC: 2412
Hemo:12.​9
Hemat: 37
Platelets​: 74

And, they're in! Yesterday's counts are great, and check out another record platelet count! Also, we have some results from Will's 1 yr. bone marrow biopsy. Great news -- his marrow is greater than 95% donor cells which means there is no sign of rejection! We're very thankful! The perplexing news -- the bone marrow cellularity (bone marrow performance​) is 20%, which just doesn't seem right. His biopsy last fall (3 months post-transp​lant) showed cellularity of 30%, and his blood counts at that time were much lower. So, we think the biopsy sample might not be accurate. The doctor we saw an UNM yesterday said that blood production can be "spotty" within the marrow, so the sample could have been extracted from a less productive area. Dr. Giller is going to call us tomorrow from Denver so we can ask more questions and get his take on it. We'll let you know what we find out. But, until then, thank you for your continued support and prayers. Chuck

 

[pampchefsarah]

An AWESOME update...with one exception...will post again when we have more news...

Great news, Nicole! Thanks for the update. Will keep Will and his cellurarity in my prayers.

 

[nikked]

A little more information...most of it sounds good!

OK. We are feeling much better after talking with the Denver team re: Will's cellularity!​ Dr. Quinones (co-head of BMT) said:
a) it is quite possible that the sample was extracted from a less-popula​ted marrow area
b) if not, and the cellularity is only 20%, they are not alarmed! He said that low cellularity is to be expected with the regimen of immuno-supp​ressant therapy Will has been on due to the graft vs. host and other complicatio​ns. After transplant, especially with complicatio​ns, marrow usually takes 1-2 YEARS to become fully functional/​productive.​ So we ARE on the right track....ho​wever, our transplant journey seems to be on the slower road, and that is OK. We are thankful that the Lord is with us every step of the way, giving us just what we need when we need it.

A couple of other bits of news gleaned from the conversatio​n.
- Broviac removal is still getting the thumbs up, and the Denver nurse is supposed to be contacting UNM to get the ball rolling on that front. Yes!
- Pulmonary, cardiac, radiology tests revealed no issues (apart from the lingering pneumatosis​). Bone density is low (the norm after BMT) so calcium and vitamin D are to be added to the daily regimen. Goofy Will is actually excited to take TUMS.
- Will's t-cell count (a type of white blood cell that the return of our pets/discon​tinuation of teal-mask wearing depends on) is still pretty low really -- again, the result of the immuno-supp​ressant therapy he's been on. As a result, the rodent and bird cannot return yet, and a former anti-fungal med (Nystatin) is going to become a part of our lives again. Will was really sad about both of these development​s but seems to be rallying -- right now he is sitting next to me singing (complete with guitar riffs) the "Dog the Bounty Hunter" theme song. Please do pray for him though, as little things like this discourage him a bit.

Thank you so much for praying for us and for the continued success of Will's transplant.​ He returns to UNM clinic Monday (hope to see Dr. M!) so we'll update then, but chances are pretty good you'll be hearing from us sooner. ​ xo-Rebecca

 

[pampchefsarah]

What a happy note on which to end the day!

 

[nikked]

I know many of you have continued to pray for Will. Things have been going really well, but today was an alarming update, so I thought I would share to get all you prayer warriors working on his behalf again! Thanks!

During the past few days, Will has gotten some pretty sizable, dark bruises on his legs. They all occurred after bumping against different things around the house/van, but they seem pretty alarming to us. I spoke with a nurse at UNM on Friday, and we are going to call tomorrow morning to make arrangements for a lab draw. So we just ask that you will pray for us in multiple ways: for Will to be brave for his poke, that his counts will still be in a good range, that his transplant will continue to engraft well, and that WE WON'T WORRY! We know that our gracious God holds Will in His hands, and that worry is futile, but I have to admit that I am struggling.

 

[nikked]

Okay, folks...REALLY need to put our prayer warrior hats on...thanks!

Update from the Crislers.................

Here are Will's lab results and something is definitely topsy-turvy.

Platelets: 18
WBC: 13.2
ANC: 11,000
Hemo: 16
Hemat: 47

The UNM docs and Denver docs are going to consult tomorrow. A bone marrow biopsy is scheduled to be performed this Thursday at 8 a.m. with many more blood tests as well...to check for infections, platelet antibodies, etc.

Basically, I don't know what else to say - this is all kind of surreal. We are relatively calm and know that is because of the many prayers being said on our behalf! Please continue to pray. God knows every cell in Will's body, and we pray He will correct whatever it is that is going on. Please pray for wisdom for all of the doctors. Please pray for peace for all of us. Will is doing OK -- he still feels great physically but is, of course, sad and worried about this news. Love you all, and thank you again for praying. I'll update if I hear anything from UNM or Denver tomorrow.

 

[nikked]

bumping for afternoon crowd...

 

[nikked]

Continue with the prayers, all...will post the results when received...

Just a quick update! First of all, thank you all so, so much for praying and encouraging us with your messages! It brings such comfort and courage knowing we have a vast army out there pulling for little Will.

His biopsy went well, and we are now at home. He feels great and was his typical, funny self at the hospital -- keeping the drs. and nurses entertained. We should have results as soon as tomorrow, we were told, and I will let you know as soon as I hear anything. So keep on praying!

We don't have the complete blood count lab results yet, but his white count did settle down a bit - 6.7, which is encouraging. H & H were good. Platelets were still pending.

He wants me to tell you, "Thank you for praying. I just had my first glass of chocolate milk since transplant!" It is often the small things in life that bring much joy!

Love to you all, Rebecca

 

[nikked]

Another update...still no real answers, but some tentative encouraging news...will post when I hear more...

Dr. McKinnell gave us some preliminary biopsy results today. Will's cellularity (bone marrow performance) is in the 20-30% range; about what it was in June. Since it's hard to compare written marrow reports, UNM will send all the biopsy slides to Denver so they can compare them with the June slides. Dr. McKinnell said it's "easier to send the slides than all the Crislers." He also said Will tested negative for platelet destroying antibodies.

What they (he and Dr. Giller) suspect is that Will may be fighting a virus. The biopsy shows that his marrow has megakaryocytes, the parent cells of platelets, present. Dr M says that a virus may have impacted them so that they are temporarily not making platelets like before. We pray everything will bounce back soon, and for continued wisdom for the doctors in solving this puzzle.

While Rebecca was talking to nurse Claudia at UNM, Will overheard Rebecca mention low cellularity. After she hung up, Will burst into tears and said, "Oh please! I just can't go through chemo again. My stomach's just now recovered." NO ONE has mentioned another transplant, but Will understands so much about this, so of course, he's scared. He feels much better about all this tonight, but please pray for him. We'll post updates as we get new information. Thank you! Chuck

 

[nikked]

GREAT...TOTALLY AWESOME...INCREDIBLE NEWS FROM THE CRISLERS! Thanks for your prayers...keep it up!

We are still at Will's appt., but I had to jump on the computer to share the good news:
Will's platelets shot up to 108,000!!!!! The doctors here are very pleased and somewhat surprised that they have come back so quickly. Hurray for the prayers of Will's Warriors!!! Thank the Lord! Also, further marrow studies revealed that the cells are still >95% Chuck's. Great news too! Flu shot for Will in a few minutes.....he is NOT looking forward to it.

Will write more later, but just had to share the news.
Rebecca

 

[nikked]

An incredible update!Here is an AWESOME update from the Crislers. For reference, following are "normal" numbers:

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

And here is the update:

Wonderful lab results from yesterday!
WBC: 5.2
ANC: 2695
Hemoglobin: 14.6
Hemat: 42
Platelets: 212,000

It is so amazing to get the call from the nurse with these results, and we give thanks to our gracious Lord (and to you all for praying)!!

The appointment yesterday went well, and it was just so encouraging to us to hear time and time again, from nurses, drs, childlife workers, the words, "He looks fantastic! He looks so healthy!!" Like a dream come true.

Our next appointment is Feb. 22 in Denver, and I believe they will test his "T-cell" level. (T-cells are the WBC's that fight viruses and fungi.) Once the T-cells return to normal levels, Will can ditch the teal mask, go on his Make-A-Wish trip, return to school, go to church, see movies in crowded theatres, etc. I know his life of "isolation" is having an impact on him, so we appreciate your prayers for complete healing.

Thank you for continuing to remember Will in your prayers!

 

[Gina M]

That is great news! So happy for him and his family!

 

[chefa]

It's wonderful to hear that Will is doing so great! There but for the grace of God...Hope things continue to improve for he and his family and he can get back to doing all the things little boys like to do.

 

[nikked]

What an amazing God we serve! Please remember to be praying for continued health and improvement for Will, as well as for Shonta (http://www.chefsuccess.com/f48/asking-prayer-young-girl-67123/), who has a long road ahead of her...

This is such exciting news, and one of the best days ever. So thankful! Exciting news from the day - the words "normal" all over the Will's lab workup (done in Denver) totally amazing for me to see:
WBC: 5.4
Hemo: 14.7
Hemat: 42.3
Platelets:199
ANC:2678

All metabolic labs in normal range = liver, kidney, etc. functioning normally Huge and giant news: T-Cells: 939!!!! Had been 189 3 months ago.

Because of excellent results (including normal eye pressure at eye exam), several of his meds were dropped. We're down to 2 daily meds that he only has to take in the morning!!! He only have IVIG once more - in March. Inhaled pentamadine will be replaced with 1 med that he will take 2 days a week, and probably only until cold/flu season is over.

Because of great immune numbers: NO TEAL MASK, except for crowded places where he will only have to wear it until May 1. He can actually GO to crowded places with mask on! Like CHURCH!!! Can get together with friends! Can play on playgrounds! Can have farmed-out pets back! Basically, have a pretty normal life again! Yippee! One of the biggest risks after transplant is complications that arise from viral, bacterial or fungal infections, and now Will's body has the ability to fight these off!! Thank you, Jesus!

Everyone commented on how great he looks, and they were very excited to see him. They also said that his visit today and the fact that he is doing so well was an encouragement. We went to the inpatient side and saw tons of our favorite nurses.

Just a good day, and one I will never forget. Rebecca

 

[nikked]

What an INCREDIBLE update and AWESOME praise report! Thank you for your continued prayers for Will...keep them up!

Hey Everyone!! We have some exciting news to pass on! Got a call from Make-A-Wish today: the docs have given the OK for Will to take his trip, AND the MAW coordinator actually got us all set to leave late NEXT WEEK!!! So after 3 nearly three years since diagnosis, ORLANDO, HERE WE COME! The MAW people have been so wonderful from the first weeks of Will's illness, and we appreciate them so much. We're also so thankful for all of you out there who support the Make-A-Wish foundation -- what a truly wonderful group.

We will be staying at a place called "Give Kids the World", spending time at Disney parks, Sea World, and the Harry Potter themepark. We will be exhausted by the time we fly home, but we can't wait! I found a neat little video clip of GKTW that aired on the Today show. Here is the link if you'd like to take a peek.
msnbc.com Video Player

Also a link to the Give Kids the World website:
Welcome to Give Kids The World

That's it for now. Just wanted to share the news. We'll be thinking of each of you as we celebrate! (And of course, we will update before departure.)

 

[nikked]

WHAT AN INCREDIBLE UPDATE! For those of you who have followed Will's saga and prayed for him and his family, THANK YOU SO MUCH! Unless something drastic happens, I think we can call this prayer request as "closed", PRAISE GOD! Of course, continued prayers as God places Will on your mind are forever appreciated!

WOW! We have had an amazing past few days! The time spent celebrating with our church family in Colorado was just fantastic -- such a sweet time of laughing, loving, crying (happy tears of course), rejoicing and giving thanks to our great God! It was so fun to see Will running around with all of the other boys - he fit right in! Sunday night, we were able to meet up with some dear friends we knew in Albuquerque, who now live in Denver.

Now for today! First of all, the counts:

ANC: 3150, WBC: 6.7, Hemo: 14.7, Hemat: 42, Platelets: 149,000 (dropped a little due to Bactrim - antibiotic)

EVERYONE was just thrilled to see Will, and they were amazed at how fabulous he looks! He was in rare form and kept them all laughing all day long. All of his testing went really well: completely normal eye pressure, perfect vision, improvement in bone density, fantastic pulmonary function and normal heart function too.

Now for the REALLY EXCITING NEWS: Will is pretty much in the clear as far as the transplant goes: risk of rejection is minuscule (they've never seen it at this point post-transplant) and his GVHD issues are really nonexistent and no longer a threat! Dr. Giller said, "We won't need to see you back here until next summer!!!!" We were totally shocked! (I burst into tears...) We figured that maybe the Denver appts. would be stretched to 6 months apart, but one year?! WOW! Our UNM appointments have been switched to every 2 months until Dec, and then every 3 months! We also were told to drop the Bactrim antibiotic, and then do a trial run of discontinuing his blood pressure med before next UNM visit.

Dr. Giller and nurse, Julie, were so kind and spent a LONG time with us today. At the end of the appointment, they each gave us huge hugs, and Dr. Giller even rode down with us from the 7th floor and walked with us through the entire first floor to the front doors of the hospital to say goodbye. It all really meant a lot to us. What a great team of doctors we've been blessed with both in Denver and ABQ!

I know this is long, but Will would be upset if I didn't report that we raced to the Denver zoo after the appointment so he could finally see his favorite animal - the aye aye. As he stood watching it, Mr. Drama said dreamily, "This moment is magical."

We head back to NM tomorrow. So far we are forced into a more scenic (and much longer) route, since I-25 is closed at the NM/CO border because of a forest fire! We appreciate your prayers.

Love, Rebecca and Chuck

 

[chefa]

HALLELUJIA!! Wonderful news! Enjoy the scenic route and safe travels.

 

[raebates]

Wonderful!

 

[nikked]

What an AMAZING miracle update! How wonderful to "graduate" and be a "survivor"! Thank you to all who have prayed for Will and his family over the years!

So far summer has been a complete whirlwind!! We headed up to Denver for Will's appointment mid-June with wonderful results to report! The docs were thrilled to see Will, and we received the surprising news that he doesn't have to return to Denver for follow-up appointments -- EVER! He has been "promoted" to the Y.E.S. (Young Enduring Survivors) clinic here at the University of New Mexico. As I type this, my eyes are just glued on the word "survivor"! Thanks be to God....and all of you for the constant support in countless ways that you have provided along the way!

We just returned from a wonderful "celebration" trip with my family (Granny, Pappy, Nana, Aunt Liddy, Katie, Elsie, and the 4 of us) to the Happiest Place on Earth and San Diego. We do indeed have much to celebrate!

Hope you all are having a terrific summer.
Much love,
Rebecca