Friday, December 04, 2015

Still Here

Abby is still in the hospital.  Her ANC is 30 and needs to be 100 before we can leave.  Also, she needs to be fever free and no blood infection for a couple of days.  Those two things are happening so far but the ANC needs to come up.  We could be here awhile.  However, her spirits are good.  She has some familiar faces now and has been able to replace our first week here's experiences with some positive ones. She had a blood transfusion which helped her energy level since her hemoglobin was so low.  Her nausea comes and goes. She's still pretty pale but her really bad headaches are now just now and then and she's not dizzy anymore.  They continue with chemotherapy while we are here, the priority being staying on the roadmap so we can hopefully see good results on the 16th when they test her bone marrow again.  She gets to go shopping today with the Make-a-Wish people downstairs.  She did this when she was 4, it's a great event! She gets to get Christmas presents for 6 people.  They help her pick them out and wrap them for her, and I think there are christmas treats at the end. So, it sucks to be in the hospital but she has been blessed by lots of fun things to do and great people. Yesterday she got a visit from a nurse who was her primary nurse last time around.  It was so great to see her.  We hugged and cried.  She has had a picture of herself and Abby on her desk for years.  She brought it and gave it to us.  She is here in the clinic so we will see her again. Abby doesn't really remember her but she was a huge gift to Mark and I!  She's a wonderful lady.  Abby also received a "bag of fun" from an organization that puts backpacks together with fun things to do for hospital stays and chemo treatment stays.  There are some amazing things in the backpack, including a Kindle Fire.  Wow! We are still blown away by it.  Thanks for all the texts, emails, gifts, meals, and prayers.  We still feel shell-shocked but know God is walking with us through this and when we look up from the pain, we see his hand all around us from beautiful mountains out our window to all of you letting us know we are not alone.

Wednesday, December 02, 2015

Spiked a fever- back to the hospital we go.

We were just about to leave the clinic, she had done great with her shots and all. The unaccessed her port and just as we were getting her shoes on, we felt her head... Hot. 

So close.  They just hooked her back up, drew some blood for cultures and are giving her some heavy duty antibiotics. She'll have to be admitted tonight, and possibly for a while. Her ANC (infection fighting blood count) is 10. Mine is about 2000 so she pretty bottomed out. 

So close but at least we were already here.  She'll also get a blood transfusion to bring her hemoglobin back up as it a bit low today too. 

Treatment Roadmap

Things have been pretty quiet since Thanksgiving and it was nice to not have to update the blog since things were going good.  I guess no news is still good news.  We did get our roadmap (treatment plan for the month last week so I thought I'd share what I know about this plan with you all.

Basically, right now our Monday, Wednesdays, and Fridays are a bit full since we have to take Abby to Denver on each of those days.  These extra trips are primarily for the shots that she has to get.  I think today is #6 in the 6-shot series of Erwinia.  She gets 2 simultaneous shots in her legs each time so she hasn't really been enjoying these days (to say the least!).  We are hoping and praying that she will find that place of strength that she has often shown in the past when she gets flu shots or other needle sticks.  Unfortunately right now she hasn't found that strength very often and the shots are producing a lot of anxiety for her prior to the appointments.

Today she will also get another chemo drug today in her port and then start the second round of Erwinia shots on Friday.  That round will finish out right near her Day-29 bone marrow test.

Here's the basic roadmap as we know so far:
  • Nov 19th- Officially started Block 1 (28 days of an intensive 6-drug rotating chemotherapy)
  • Dec 16th- Will be the Day 29 test of bone marrow to find the MRD (Minimal Residual Disease) 
  • Dec 17-23rd -Treatment break and MRD test results back.
  • Dec 24th or Dec 28th- Start Block 2 (28-day intensive chemotherapy)
  • End of Jan-  MRD bone marrow test and 1 week break for counts to recover. 
  • After that... we don't know yet. 
Based on results of both Day 29 bone marrow tests (but the first test is the most important) she will either: 
1) Continue chemo (still don't have a good roadmap of what this would look like)
2) Start the process for a bone marrow transplant.

So, we are very hopeful (and praying hard) that the Day 29 test shows that the cancer cells are gone.  If that is the case, we have a lot more options on what our future looks like in terms of here treatment and where we might be able to get that treatment done.

Off to our appointment.  I'll try to most more often this week too.