Saturday, December 26, 2015

MRD results "I don't wanna write that blog post"

We finally got the call with the MRD results on Christmas Eve from Dr. Smith.  Not the Christmas present we were hoping for though.

After lots of talking Tiffany said, "Well, who's gonna write that blog post?" Neither of of really wanted but it has to be done.

Basically the MRD ( results weren't as promising as he had hoped (translation: chemo alone isn't going to work.  Secondary translation: Abby will need a bone-marrow transplant or more).

They wanted the MRD (minimal residual disease) to be less than 1 in 10,000.  Abby's test showed 2.8% or 280 cancer cells out of 10,000.

We don't have much information on the future but here is what we kind of know.  Abby will continue the Block 2 protocol and probably the Block 3 cycle of chemo to get continue to kill her cancer.  Then somewhere this winter or spring she'll be transferred to the bone marrow transplant team.  Once they have a matched donor they will do a set of intense chemo and x-ray treatments.  The bone marrow will then be infused into her like a blood transfusion, it will make it's way to her bone marrow and graft in and then start to produce new blood for Abby.

One pro is that a bone marrow transplant is a significantly shorter process then 2.5 years of chemo but it will be intense.  6 or more weeks in the hospital is all we know at this point.  But if all goes well, she'll be done by the fall, maybe earlier.  Children's Hospital in Colorado is one of the top bone marrow transplant centers so I know we are in good hands.  They might decide something different when the leukemia team meets on Wednesday but it seems like the bone marrow transplant is the most likely.

We are just trying to take it 1 day at a time right now.  I don't have enough brain and emotional energy to look much further ahead than that.  We had a good Christmas morning and have 2 more days here at home before we have to check back in to the hospital for a 5 day stay.  The week after that are clinic infusions for 4-5 hours each day and then we'll have another little break (though she may spike a fever in there and have to go back to the hospital again).  Either way, we are going to enjoy our next couple of days at home!

Hopefully you had a good Christmas and are looking forward to the New Year.  Take care and we'll post more as we know more.

Monday, December 21, 2015

Block 2 and Still Waiting for MRD

So the initial bone marrow test was negative, 0% leukemia cells out of 100.  The more in-depth look (MRD-they look at 10,000 cells) is still in the works in Seattle.  We made another trip to Denver today to the clinic for the first round of chemo on block 2.  It's another 29 day block with a bone marrow test and another MRD at the end.  They compare the two MRDs and decide if chemo is working or if we need to go the bone marrow route.  Block 2, as Mark mentioned yesterday, has another 5 day hospital stay in it, followed by a week of 4-5 hour days in the clinic.  Then we get a week off in terms of chemo.  Her ANC will be really low by then so we may end up in the hospital again if she gets a fever.  We also took a peek at the chemo roadmap for the next 6 months.  Block 3 is even more intense than block 2 in terms of hospital stays and types of chemo they give.  Obviously, we want to follow the doctors' recommendations since she is a special case, but it's a lot of chemo.  It was a long road last time too but it seems like we have more on our plates now with older kids, a whole life to pack up in Japan, and a this sudden u-turn in our life journey.  I was talking to a wise friend today who reminded me that gratitude keeps us afloat.  It keeps us from sinking into hopelessness.  There is always something to by grateful for.  Yes there is a lot of pain in our journey right now, a lot of loss to grieve and a lot of hard things ahead.  There is also a lot to be grateful for.  It's Christmas and we have a God who loves us beyond what we can wrap our minds around.  He shows us how much he loves us by giving us daily gifts.  Leaves with frost on them on a morning walk that reminded me the beauty is all around.  People caring for us at the clinic, at home, at church so that we don't have to shoulder this heavy load alone.  Cards, emails, texts, gift cards, words of comfort... we are so grateful for the knowledge that we are not alone during this trial.

Sunday, December 20, 2015

Block 2 starts Monday.

It's been so nice to be have everyone in the same house again. Abby's been feeling ok. Mornings are a bit tough with nausea but she's still eating pretty good overall, she just eats more at night now. 

Block (or cycle) 2 starts on Monday with chemo and the grumpy pills (high-dose steroids) through Christmas. Then she'll be admitted again for a week or so starting on the Tuesday after Christmas for a higher dose prolonged infusion. 

We don't have the full test results of the bone marrow test back yet but the initial results look promising. The Dr. made the analogy of a garden where plants and weeds grow for her bone marrow. Basically they just used Round Up on her garden and they killed it all, good and bad. The results right now show that not much of anything is still alive in that bone marrow garden and therefore the chemo is working well. 

It's nice to see Abby feeling good enough to go outside a couple times in the last days and I'm not looking forward to this next pulse. Hopefully each pulse will be a little less intense as we move on through this treatment. Monday's results will define that path more clearly. And as we all are, I'm praying for the easier of the 2 paths as well. 

More info once we have it.