And The Winner of Round 1 Is--

Jacob Conner!  YOU are the preliminary winner* for bone marrow transplant donor!  Congratulations Jacob!    Good luck in the next round toward being the PERFECT MATCH!

*Two younger siblings have yet to compete.  

Coming up Next...

Kaitlyn's blood cell counts are finally on the rise!  So, here's what's coming up:
Tomorrow--we may find out if any of the siblings that have been tested so far (Levi, Alexa, Mallory, Sam, or Jacob), is a preliminary bone marrow match.  I heard today that the lab said somebody's test results look promising.  I don't know whose.
In the next few days--ANC (ahh...another acronym), which stands for Absolute Neutrophil Count.  Neutrophils are the white blood cells that fight infection.  When you have few, or no, neutrophils due to, say, chemotherapy, you are labelled "neutropenic" and put in isolation on a low-bacteria diet.  Kaitlyn has been on neutropenic restrictions for almost a month.  That's right--confined to her hospital room for a month...not allowed fresh fruits or fresh vegetables in a month....  As her white blood cells rise in the next few days she should be able to go out in the hallway and eat a banana!  Hey--you don't know how much it means 'til it's gone!
Monday--Kaitlyn has been tentatively scheduled for her bone marrow biopsy.  This will tell whether this first round of chemo has put the leukemia in remission.
A day or two later--Kait will be discharged and, if a local pilot steps up and volunteers, we will be flown to SLC by Angel Flight.

So that's it.  Pray for a perfect match, a higher neutrophil count, a safe flight, and remission!
Stay tuned....

Don't Worry...

When I woke up this morning I found out that Kaitlyn had been given a blood transfusion during the night.  And she had one the night before.  And she had a platelet transfusion yesterday morning.  Me, "*worry, worry, worry*"

Now, transfusions are necessarily common among the AML set, but after a couple of weeks of her not having any and then being given 3 in a 24 hour period?  Hey--isn't this the time when her blood counts are supposed to be on the rise? Her white cells are still at zero and now the red cells and platelets are also on the decline?  That didn't sound good.  Me again, "*worry, worry, worry*"

By the time the doctor came in I had at least talked myself down to a manageable level.  She explained that transfusions are very common at this point in the process.  Red blood cells live 120 days then die and are replaced by new ones made in our bone marrow.  Kaitlyn's bone marrow function has been deliberately suppressed by the chemo so after being in here a month most of the red blood cells that were in whatever stage of life when she came in are dying off and since her bone marrow hasn't quite kicked in yet there's not much of anything to replace them so they maintain patients with transfusions until the--that's right--blood counts come up!

Which, everyone assures me, they will.

An Acronym a Day...

There isn't much to post right now--we're in the slow, slooooow process of waiting for Kaitlyn's blood counts to rise.

For those interested, I'll fill you in on some of the daily routine's acronyms:

CBC - Complete Blood Count
Every morning, at my request, the nurse brings me the latest lab report on Kaitlyn's twice-daily blood test.  I study it for about 20 minutes searching for any movement in percentages, comparing it to the day before, etc.  My understanding of what is reported is probably about the same as Kait's WBCC (White Blood Cell Count), which is just above 0.

CHG Bath - Chlorohexidine Gluconate Bath
After every shower Kaitlyn has to do a CHG bath.  CHG is an anti-microbial solution.  We dilute the CHG 50/50 with water and after she's dried off from her shower we use at least 7 disposable wipes to basically "paint" it on her, then she lets it air dry before she gets dressed. This is to  prevent infection--especially any kind of staph infections--while her immune system is depressed.  She also has to rinse her mouth with a CHG mouthwash 3-4 times every day, which I think is why she has had so little problem with mucositis (see below).

TPN - Total Parenteral Nutrition
The last time Kaitlyn ate a meal was on the evening of November 8--she had a piece of pizza.  One piece.  After that her appetite bottomed out and she won't/can't eat anything.  We are told that this is very common with the intense chemo treatment she received.  The drugs have a pretty strong effect on the digestive system and thankfully Kaitlyn has not had some of the terrible side-effects like severe nausea, extremely painful mouth sores (i.e., mucositis), etc., that others have experienced, but she does have no appetite.  We are assured that as her counts come up one of the first things to heal will be the digestive tract and her appetite will return.  In the meantime, she is given all of her nutrition (including lipids/fats) through her i.v.  In an effort to keep something going through her system on occasion, I've been trying a few things and found that she will eat small things like goldfish crackers when she's watching a movie or t.v. show.  She said that they are so small she can eat them without thinking about it.  Maybe I'll try the mini peanut butter Ritz.  FYI--she's only lost about 5 pounds since she's been here.  Not that she had any extra to lose, but I don't think that's too bad.

 

A Voice of Experience

Fact:  Acute myelogenous leukemia's victims are usually adults and they're usually men.

Brother Johnson came to visit Kaitlyn today. (In our church we call each other "brother" and "sister," and it is used as a respectful address similar to "Mr." and "Mrs." as well.)  Anyway, Casey and I had met Brother Johnson here at church, but he hadn't ever met Kaitlyn of course.  He's a very nice man, probably in his 70's, but the really interesting thing about him is that he has AML--the same type of leukemia Kaitlyn has.

Brother Johnson was diagnosed with AML in January of this year.  He went through all the courses of chemo and he's doing pretty well now.  He talked with Kaitlyn a little about how the treatments go and they compared notes.  He gave her some tips and encouraged her to move around and try to be as active as she can even if she didn't really feel like it.  He also advised her not to fall down--evidently he fell and broke several ribs during his treatments!  (I'm not sure that was related to the leukemia.)  He said that he has not had a bone marrow transplant yet, but if he relapses he will.

We told him about our plans to transfer to SLC to be closer to family and he agreed that sounded like a good idea.  He told us how much having his sons visit helped him when he was still in the hospital.  (He has 8 sons!)  He said he would be by to visit again and asked if he could do anything for us.  Nothing better than having someone diagnosed 10 months ago walk in here looking healthy and sound!

I am so impressed that he took the time to come and talk to a young girl he's never even seen before, but then everyone here has been great.  We have truly been blessed to land among such caring people!

...And It's Gone

Casey & Kait

After the pixie cut of last week the hair started falling fast, so today we borrowed the hair clippers from Child Life and off it went!  Casey was the barber and we still think she's a cutie patootie!  Love you Kaity-lyn.

Medical update:
Kaitlyn's response to the treatments has been textbook.  She is often very tired right now and she has no appetite, but that's to be expected with her counts so low.  As of this morning's lab report the ANC (absolute neutrophil count) has gone from 0.0 to 0.1.  Neutrophils are the white blood cells that fight infection and keep us healthy.  Although 0.1 may not sound like much it was happy news here because this means that after chemo had killed off everything that her body is starting to produce neutrophils again.  When it gets up around .5 she'll be able to leave her room and when it gets to 1+ she may get a few days out of the hospital!!  Woohoo!  The doctors are very pleased with her progress so far.

Boring Is Good...Kind of

Yup.  Boring is good.
Kaitlyn's chemo is done for this round.  Boring.
She tolerated chemo quite well.  Yawn.
Her white blood cell counts are at zero now.  As expected.
Currently, she pretty much has no functioning immune system.  Just as planned.
So far all tests for any infection are negative.  Nothing exciting there.
Nurse, "Do you have any pain?" Kait, "No." Nurse, "Any nausea?" Kait, "No."  Nurse, "How do you feel?" Kait, "OK."
Ho-hum.

So we wait.  
Wait for her immune system to begin to rebuild itself.
Wait for her blood cell counts to begin to rise.
Wait and pray that no infections set in.
Wait for the results of the next bone marrow biopsy.

Ever had to wait in a 16 x 12 room?  For weeks?