Relapse Journey

Day 88

It’s been a busy 2 weeks for Team Bella. Yesterday, she commenced week 11 Chemo cycle (still part of the clinical trial).

Still no MRD result from the post -induction chemo cycle *fingers crossed for a good result*
If you can recall, her last one for post-induction was not good, given the MRD in reinduction was 0.15 then in post-induction it was 0.467.

Now in relapse consolidation, we are praying the high dose chemo has been effective in killing off the remaining leukemia cells, so that Bella can AVOID further high level treatment to eradicate her body if the mutant lymphoblastic cells!

If her MRD isn’t zero, then Bella will also have to go through Total Body Irradiation (TBI). Wed this week, we had our first visit to the Peter Mac Cancer Centre. We had a TBI planning meeting with the Snr doctor, followed by a full CT scan to map Bella’s body in preparation (should she need to have TBI). TBI will also carry potentially high risk of additional long term side effects for Bella (e.g further damage to her pancreas & development of diabetes Type II 😱). We will deal with those challenges should they occur. Unfortunately, every treatment on this journey it is a double edged sword for oncology patients.πŸ€”πŸ˜±πŸ˜¨πŸ˜’

The TBI will take place over 4 days if her MRD is not zero/negative. The full body radiation therapy will assist in bringing the MRD down further if there is any residual disease still hiding in Bella’s bloods. In addition to this therapy, she will most probably also have a Stem Cell Transplant SCT (whereby they transplant her own cells back into her to counter the side effects of treatment etc. It is undecided at this point whether our consultant oncologist will use targeted therapy-all dependent on the MRD result we are yet to receive from Sydney.

Overall, it’s been such an AMAZING time for us to be able to spend some much needed time at home as an entire FAMILY UNIT. Freedom for Bella from the IV pole, having the freedom to simply be a 7 year old kid. Home life was heavenly.

As a veteran oncology mum I can never get used to the confronting behaviour of a child on steroids & their behaviour whilst on treatment. It is heart-breaking to watch her have steriod “roid rage”. This little human being who is generally so placid & beautiful can become so angry, irrational & exceptionally demanding at times. For example, on the car, we can only listen to classical music, or only something relaxing. No talking. Windows need to be up. Olivia & mummy cannot sing to the tunes.
This is how the impact of treatment has on your behaviour, mental health & relationships. It screws up your REAL world. The normal stuff is no longer normal. You become extremely sensitive towards noise, light & smell.

So eventhough we were home, it was like exhausting. We were walking on egg shells around Bella. Sometimes, it was best to ignore the tantrums because sooner or later she would run out of steam. 😒

She doesn’t mean to be mean. The treatment causes her to be so angry. Quite simply she is OVER it. 2.3 years was bad enough, let alone another 2nd cancer journey! 😫😫😫

Her carers & I try to practice MINDFULNESS behaviour with her. But it doesn’t always work. 😣 When everything becomes too much I need to resort to giving her 1/4 tablet of Lorazapam. It pains me to have to use it it, but sometimes I need to help her sedate her because she can get so wound up! It becomes stressful for everyone!

Personally, RELAPSE has been far more challenging, compared to our diagnosis journey. Mainly due to the response from her body towards the additional high dose chemo. She’s endured a port infection, oedema, pancreatitis & a fatty liver …then the protocol has differed greatly from the standard High Risk ALL treatment. There are more unknowns throughout our 2nd journey.

Team Bella are EXHAUSTED mentally, physically & emotionally.

But we see light at the end of the tunnel. Bring on new marrow = new LIFE for Bella. This will hopefully be a CURE & it’s just around the corner!!

The lead-up to BMT will be intense. Her body will be pushed to it’s limits.😱😱

Team Bella: Not afraid to say we are petrified but excited all at the same time! But the one CONSTANT in our camp is: we will NEVER GIVE UP! NEW LIFE-BRING IT!Β πŸ‘ŠπŸ‘ŠπŸ‘ŠπŸ‘Š

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