Relapse Journey

BMT #2, Day +96 – bringing 2017 to a close

Team Bella Update:
Pre-B, ALL (High risk), Relapse, Hemopioetic Stem Cell Transplant BMT #2, Day +96.

Happy New Year 2018!

Yesterday, Bella went to theatre for the important day +100 BMA (bone marrow aspirate ) & LP (lumbar puncture) to obtain her CHIMERISM. The test for chimerism after a hematopoietic stem cell transplant involves identifying the genetic profiles of the recipient and of the donor and then evaluating the extent of mixture in the recipient’s blood, bone marrow, or other tissue. The previous two chimerism results at day +30 & day +60 results were exactly what we needed. Bella had engrafted her dad’s healthy stem cells to produce healthy bone marrow >99% donor marrow. So basically, she currently possesses new healthy bone marrow.

Previously, in the 2.3 years in which she was given chemo, it reduced her residual disease (leukemia) to zero. But once she stopped taking the chemotherapy drugs, the cancer cells came back as essentially, she still possessed her diseased bone marrow.

The day +100 results will be available in ~2 weeks, but all blood results from the past 2 months indicates that Bella has successfully engrafted.

Day 100 is important in our journey as it’s like a certain end point for BMT. If the patient has not developed any major issues related to GvHD (graft versus host disease ) or any other organ failure / complications (as a result of the transplant ) then Bella’s oncology team move towards reducing her therapy.

They will consider weaning her off the nasogastric feeds once she reaches a good weight. We are currently 17.2kg. She needs to be at least 18kg for the dieticians to declare her nutritionally healthy. Removing her permacath etc. Appointments have already gone to once weekly!

Bella with her Day +100 Smash Cake.
Bella with her Day +100 Smash Cake.

Bella has been on cyclosporin since cell day 0. Cyclosporine is used to prevent organ rejection in people who have received a bone marrow, liver, kidney, or heart transplant. It is usually taken along with other medications to allow your new organ to function normally. Cyclosporine belongs to a class of drugs known as immunosuppressants. Bella’s dosage is very low at the moment & Dr François/Dr has advised us she would be weaning bella off the cyclosporin over the next month! This means that the oncology team are confident that her body will be able to maintain the graft without the drugs.

As 2017 draws to a close Team Bella is exactly where we hoped we would be. Our journey will never be entirely over as Bella will live with medical reviews for her entire life. But that’s only a small sacrifice to make in the scheme of things.

However, we are forever grateful & thankful each day for the amazing team at RCH & to our beautiful Team Bella supporters (our family, friends & the wider community in Australia & overseas). We could not have done this without you. We love you all.

Team Bella: Day +100 we made it. Albeit some tortuous mental mountains we climbed along the way, but we never gave up!

Relapse Journey

Pre-B, ALL Standard Relapse Day +82.

Team Bella update:
Pre-B, ALL Standard Relapse Day +82.

On Thursday we attended a review at RCH. Dr Dave was really pleased with Bella’s progress. Currently no signs of GvHD, her weight had increased to 16.7kg & her liver function had improved after discontinued use of Voriconozole & Panadol. ALT down to 277, originally over +1000. Each day, Bella’s stamina improves & right now we’re just trying to help her put back on some weight through the nasogastric feeds! They run pretty much 24/7. She experiences nausea daily, so keeping down her medications & Peptamin Jnr feed can be quite challenging.

Dave also shared some other good news to inform us that after Christmas, we’ll move to weekly appointments instead of bi-weekly. Bella’s bloods are really good & her neutrophils are currently 2.10. Haemoglobin + platelets are also going strong.

As we near 2018, it allows me as a mum, carer & advocate to reflect on our 2017 journey. Relapse is so different compared to diagnosis. Both are equally traumatic, but in relapse it’s scarier because there are less options as we may have exhausted all treatment options.  But after each conversation we had with Bella’s oncology team, we kept it simple.

Giant Chess, anyone?
Giant Chess, anyone?

NEVER GIVE UP!

Surrounding ourselves in the positive energy, prayers & LOVE from our Team Bella supporters was invaluable. You know who you all are, so thank you deeply.

We are away for the weekend in the Yarra Valley to immerse ourselves in nature. It’s part of our de-tox regimen & sharing togetherness after our ordeal of 2017. We are so grateful for what we have.

Team Bella : Never give up!

Relapse Journey

Making Happy New Memories: Post BMT #2, Day +74.

Team Bella Update:

Pre-B, ALL (high risk), Standard Relapse, Post BMT #2, Day +74.

It’s hard to imagine the joy one feels at reclaiming your life. Childhood cancer had robbed our family of everything we viewed as normality. But we’re bringing it back.

A fortnight ago Bella went in to theatre for her day +60 Chimerism & LP procedures. We are so pleased to share the good news with you all that the engraftment is still going strong & the chimerism result was 99.3%. Woot! Woot! So essentially Bella’s marrow is all papa Futoshi’s healthy both marrow.

Bella has not required any blood products either to date, since the transplant! The only concern we are dealing with is her liver function. So Dr François has stopped Voriconozole (antifungal) medication which can impair a patient’s liver function. Hence we’ve replaced the antifungal with with Fluconozole.

Other good news includes the end of Insulin Induced Diabetes! Bella’s pancreas is coping well & recovered enough to regulate her blood sugar levels independently. No more injections or finger pricks!! Whoohoo!

With her health slowly improving each day, we’ve been able to reduce her medications upon the doctor’s advice. Only 4-6 meds required at any one time.

We are just enjoying home life & simply being in one another’s company. It’s not always smooth sailing, but that’s to be expected after our family was forced to separate due to Bella’s treatment. It’s been challenging for our little pocket rocket Olivia. Hopefully over time, the dust should settle.

Thank you to everyone who has Bella in their thoughts & prayers. We are eternally grateful.

Team Bella: Making new happy memories.

Anglesea