Team Bella Update
Day -10 (commencement of pre-conditioning) Pre-B, ALL, Standard Relapse
Team Bella had an AMAZING weekend leading up to admission for BMT. Bella has gained weight (she now weighs 16.9kg after opening her bowels! Woot! Woot!). 😁 Prior to 23/3/17 [relapse day, (day zero) she had been 17.7kg]. I am so pleased that we’ved managed to increase her weight to at least just under 17kg. This will help her in terms of energy reserves during transplant when she will inevitably lose her appetite & we are forced to place her onto TPN (total parenteal nutrition) & lipids.😫
Mentally, it has been a tough weekend for me. 🙁 Of course I am so grateful, Bella has access to treatment, services & expertise made available etc. But as a mother, carer & advocate, what she is about to go through (i.e transplant) is an exceptionally hard pill to swallow. My little baby girl will be an organ recipient. She will never produce her own marrow again (which I know is diseased) & will possess both my genetic material (once my stem cells engraft in her bone marrow). Genetically she will still be herself (think of someone who has an organ transplant eg. kidney or liver etc), however she will become a hybrid human being I guess? A bionic woman?! No just kidding. There’s nothing superhuman about my stem cells. Just that they are healthy, and will replace her diseased marrow. Possession of a dual, genetic code? Medical science is pretty damned cool if you ask me!?
Back in 2014, we were on the verge of going to transplant. But on the advice of our oncologist, we didn’t. It was 50/50 transplant vs no transplant. The reason for this fence-sitting was due to Bella failing the 1st round of chemo (INDUCTION FAILURE). 80% of children diagnosed with Pre-B ALL, go straight into remission following the first month of HD (high dose) treatment. Bella didn’t due to the complexity of her cytogenetics. On top of her ALL diagnosis, she has a somatic mutation. She also has the Ikaros gene (deletion of p16). P16 is a tumour suppressor gene. 😢 I queried with our consultant oncologist when or how? She advised me they could not be certain when this had occurred. But it did. And like CANCER, there is no rhyme or reason. Shit happens (excuse my French).
In May of 2014, our oncologist decided to continue on with Bella’s treatment into consolidation phase. There was no matched donor at this point. Futoshi, Olivia & myself were tested to see if we were a matched donor to Bella. Unfortunately, nobody was. So our oncology team checked the International BMDR but those results would take sometime. Bella’s treatment continued….
In the meantime, I was approached by our oncologist. We had an important meeting scheduled. She firstly asked Futoshi & I whether we had completed our family. I said yes. I explained how Tosh wanted a 3rd but I wouldn’t give him another child because he really wanted a boy. Being practical, I told her we would have had a 3rd child if we both agreed we wanted 3 children, & not because of their gender. So Tosh graciously accepted my decision! We kept our family at 2. 😉
A bombshell was about to hit. Our oncologist continued by adivising me if we wanted to expand our family & potentially provide Bella with life-saving access to a DONOR for life should she relapse, the medical team on compassionate grounds, could assist us in genetically manipulating the fertilized egg, to ensure it had a 10/10 HLA match against Bella.
I sat there stunned to silence. Tosh …I am not sure if he fully comprehended the enormity of this 😂. He was probably in shock as well. Our story, our predicament, is what Hollywood movies are made of. If you recall Lorenzo’s Oil, the story starred Nick Nolte (father) & Susan Sarandon (mum). Lorenzo’s Oil was released in 1992 & was an American drama directed by George Miller. It was based on the true story of Augusto and Michaela Odone, two parents in a relentless search for a cure for their son Lorenzo’s adrenoleukodystrophy (ALD) [Wikipedia ].
In the movie, the parents went on to create a child under guidance from their medical team. They produced a 2nd child. This child grew up to become their sibbling’s life saver, on countless occassions. Unfortunately, the sibbling donor also child grew up eventually resenting the parents decision to have a 2nd child to save the life of their first child who had a life threatening illness. There are many pros & cons about going through with such a huge decision, but as parents, if I was placed into this predicament I would do it in a heart-beat. Because you simply cannot sit back & watch your child die.
We had to stew over that issue until finally, Bella had some good results in consolidation & her MRD (Min residual disease ) reduced to 0.12 (induction result was 7%). So Team Belle proceeded with just chemo to hopefully cure her.
I am sharing this historical event because I want our story to remain transparent. I want to raise awareness about how this cancer journey impacts on each & every single family member. It is heart-breaking, gut-wrenching & so confronting when your child is diagnosed with cancer. We have been through so much & it truly is EXHAUSTING.
To go through transplant, well it’s a double whammy. Alas, here we are.
Bella has had a spoonful of fun, handful happiness, rays of sunshine & lots of love for good measure.
Thank you for following our journey & sending us & giving us so much support & love.
Team Bella: BMT here we come! New life! Bring it!!! 👊 💪❤💚💙💛💜