It's a small taste of the same things that we are feeling right now. Glad for all of the love, the care of the Docs, and our friends. But, we'd also like to not have to be updating this page still. It will be a great day to me when our Google page rank fall down off of the first page of the search results. :)
It's been a hard shift for us again. From a healthy kid to once again back in the hospital. I mean seriously, Abby was doing so well: getting stronger, playing in the snow, walking with us around town, doing math... you know all of the normal things of life. And now this. -whatever "this" is as we still don't know. I don't know if this is the right forum for full honesty about how we are doing (and I was just in the hospital with Abby for 5 days so I probably not in the best spot either). But it's been a hard-to-swallow reality check that this cancer recover road isn't just a walk in the park.
It has been a hard and anxiety producing place to live in right now. Hard for Abby. Hard to endure yet another needle stick for blood draws. Hard to keep getting new IVs because they are only lasting 2 day. Hard for her not to be able to straighten her arms, or to walk, or sit up by herself in bed. She's a perseverant and tenacious kid but everyone gets to a place where they are just exhausted and I think she is there daily right now. And, for me, it's hard to watch and not be able to do anything about it.
The hospital is just a hard place to be. So pray we can leave there soon.
- They still don't know what is going on.
- Bone marrow test was negative for cancer so far (deep test comes back later this week or early next).
- They have the infection disease team checking for weird and rare infections and viruses but they are pretty sure those will come back negative.
- It could be a rare form of graft vs host disease that is attacking her liver and muscles (but they need more test for this).
- It could've been a reaction to one of the meds she was on for the fungal and bacterial infections. Both drugs come with warning labels for rare but possible tendon rupture/damage. -but after you have already put your kid in a lead shielded room for radiation you kind of stop reading about all of the possible side-effects of these treatments.
- Either way, we'll have to probably get her on steroids to bring down the inflammation and then do a lot of rehab to get her moving around by herself again.
- AM- Abby gets another new IV and blood draw. -Plus takes pills, drinks her water (62oz per day), does her stretches for her arms, hamstrings, calves, ankle and shoulders to try to regain her range of motion.
- 11:30- Abby gets a 2 hour MRI to help diagnose where all of the muscle damage is so that they can take biopsies of those muscles later this week.
- PM- More pills, physical therapy, water, mouth care, etc.
- All the same AM and PM items (which is a full time job).
- Surgery to get a semi-permanent IV (called a picc line), and a Liver biopsy, and muscle biopsies.
- Maybe get to go home. Please, please, please.
- For strength as we run this new leg of the race.
- For Abby to relax into this place even though it will take a lot of her energy.
- That our relationship with Abby will transcend the: pill pushing, the making her drink water, making her stretch, making her....
- That we all can have peace about all the balls that will be dropped during this period of our lives in our marriage, work lives, school lives, family time and all of that.
- And of course for healing of Abby's muscles and for them to stretch back to their former length and strength.