Team Bella Update
Pre-B, ALL, Relapse, BMT #2 Day +63.
Transitioning to life on the outside is challenging, but we are taking one day at a time…
Today, Bella went into theatre under GA for her day +60 BMA (bone marrow aspirate ) & LP (lumbar puncture) to obtain Chimerism & other hormone & organ functions results. Our previous day +30 achieved a near perfect result @ 99% engraftment so we are hoping for another good result for Bella’s 2nd month following her BMT. Upon review (bi-weekly) doctors are really pleased with her progress. No GvHD so far.
We’ve been home for approximately 2 weeks. Our first week was like a train wreck. Interactions between our family were somewhat “dysfunctional/strained “. Can you blame us after 7 months of literally living @ RCH with Bella’s life hanging on tenterhooks? +!!?+ we are all exhausted.
I have compartmentalised her caring needs because this looking after a child post-BMT is complex. Breaking down the different aspects of care helps provide structure/focus for us as a family:
Medical (medicines) are slowly reducing in quantity. Thank goodness! Her health appears to be improving from week to week. We went home from BMT in early Nov, discharged with 15 meds. This morning Dad gave her 6. Win win!
Diabetes: this part of her medical care has been intense. 4 finger pricks per day before food to follow her blood sugar glucose levels (BSG) & subcut/injection of Lantus (slow release insulin) each night. Good news is, this Steriod Induced Diabetes may have cleared. Last 2 nights we’ve withheld insulin & her BSG was within range. So this week we might cease diabetes care. Woohoo!
Academic: school based work has been challenging. Bella is still living in hospital mode mentally. She enjoys watching tv at all hours. So I structure tv to allow her to choose 4 days in which she can watch, the others I encourage playtime. She’d sit there 24/7 if she could! She doesn’t want to repeat Grade 2 (otherwise she’d end up in the same grade as her younger sister Olivia next year!) So we are going to support her through home schooling through summer. She is trying but it’s very hard when some days you feel like crap…
Physio: Her body is still physically deconditioned. Thankfully, RCH physio have provided me with a ‘cheat sheet’. A guide/ideas to help encourage muscle strengthening & improving endurance. I took her to the park today. Bella slid down a massive slide & she rode her bike this past week, so things are definitely improving.
Diet/nutrician: We have struggled on & off throughout each week with keeping the Peptamin Jnr feed down. The previous week she threw up her NG tube twice resulting in x2 visits to RCH to have it re-inserted. I have since overlapped the anti-medics to help reduce nausea. When we prepare the feed it’s identical to baby formula milk. We aim to give her 1000ml/day. Bella still grazes over food so nutrition via NG tube is pertinent in continual improved health for Bella. I must admit, with each passing week, she is requesting more varied foods & has started to eat vegetables! Yay!
Coupled with regular parenting duties to include a 6yr old sibling-our journey has been nothing short of full-on. House maintenance for a BMT patient & school runs + cooking fresh food most days as Bella is on a CLEAN diet is pretty exhausting. Tosh & I are knackered by 10pm! Last night she wanted to watch a movie as she wasn’t sleepy following a big afternoon nap.
Transitioning from hospital to home has been a roller-coaster ride but it’s safe to say we are in control of when we want to disembark. Well, Bella’s recovery will dictate that actually! Thank you to our families who are always there for us & of course our ARMY of supporters. We love you.
Now fingers crossed for a great chimerism result from Day +60!
Team Bella : Doing it tough but I think we’re built tougher!