Medical update infused with some reflections from our day…
Pre-B, ALL standard relapse, Post induction cycle, day 57.
Bella has been feeling pretty miserable/grumpy/flat. Sleeping most of the day ~16 hours each day this week. Platelet transfusion last night after I requested for a review. Bella’s platelets were 18 (pre-transfusion). This week she was given 3 types of chemo, Etop, cyclophosphamide & Erwinia. She experienced mild nephrotoxicity towards Erwinia, extreme lethargy, mild mucositis, coupled with the on-going chronic pancreatitis.
Yesterday morning I met alone with Bella’s gynecologist. This meeting was arranged by RCH due to Bella now sitting in the HIGH RISK category for fertility issues due to relapse & the need for her to go to transplant.
It was a very confronting but extremely important information sharing experience b/w Bella’s gyno & I. She approached our 1st session extremely well, telling me about her background/training & asked me questions about Bella’s medical history & Bella’s recent relapse journey.
Family-centered care = tick.
So we are at this juncture in Bella’s cancer journey. As a mum, carer, advocate my family & I have a week to decide whether we will go to fertility preservation for Bella. Why? Because following the very toxic & often highly risky bone marrow transplant procedure, Bella’s genetic material will change or her reproductive organs may be damaged beyond repair.
Once Bella’s marrow is essentially ‘put to sleep’ & the new, healthy donor marrow is introduced & hopefully starts to work, she effectively will be an organ donor recipient.
To clarify, our bone marrow is like a factory. It is an ORGAN. It is the spongey material which exists within your bones. Marrow produces important cells like red blood cells (to carry oxygen around your body amongst one of its uses), white blood cells (b & t cells etc which fight immunity) & platelets (cells which help to protect your body & help it heal when you bruise). There are many other cells produced in your marrow, but I am not trying to write a textbook here. 😂😂😂 I just want to help others understand childhood cancer & the challenges Team Bella faces on our journey.
In Bella’s case, 1 immature B cell (white cell) mutates & it is immature. This white B cell has not developed into a mature cell in your marrow to lend it’s hand in Bella’s immunity. This immature cell starts to aggresively duplicate itself, crowding out Bella’s bone marrow, thus preventing her from creating healthy marrow. Cancerous. Essentially, without chemo ( which is cytotoxic & kills all white cells) she would die.
The 2.3yr of chemo was meant to stop the leukemia from returning. Unfortunately, due to Bella’s complex cytogenetics (deletion of p16 Ikaros gene this is a tumour suppressor gene we all have) but in Bella’s case, it has been deleted during the genetic mutation. Hence her chance of relapse was high & unfortunately she relapsed 9 mths post/end of treatment.
A transplant would hopefully, be a cure for her as it is introducing foreign, healthy marrow into her marrow, thus giving her a second chance of survival. Chemo obviously did not work.
Now, back to the gyno appointment. So, we have 3 choices in Bella’s future chances of growing into an adult & making the decision to become a mum (which most women one day may/may not aspire) to do.
We as a family, will make an informed choice on what would be the BEST life choice for Bella (who is a human being in her own right, but is also a minor-who doesn’t understand the enormity & complexity of her treatment) given her current circumstances.
In Bella’s case, the options are:
1. Do nothing : allow her to develop naturally post treatment & she has a 20% chance of conceiving naturally with her own fertilized egg one day.
2. Ovary tissue preservation: we have the option to store Bella’s ovary tissue . The obstetrician will perform a laproscopy to surgically remove 1/3 of Bella’s ovary tissue to preserve it. This preservation is offered free at Melbourne IVF atm. They extract tissue from Bella, not her dormant eggs being ‘pre-pubesesant’. Her eggs have not developed yet & technology is not currently available to stimulate immature eggs to become healthy eggs which can be used for fertility. This also gives her 20% chance of fertility.
3. IVF (obtaining a donor egg preferably from her sister Olivia or unrelated donor if needed) or adoption.
Bella’s reproductive organs should still allow her to carry a baby to full term (even with the cancer treatment she has received so far). 😉😁
Where is my mind sitting at with this decision??? Million dollar question.
I am steering towards doing NOTHING. Why? Because currently, Bella’s main priority is surviving her next big challenge: BMT.
Fertility preservation will involve another medical procedure/surgery. It will carry the risk of medical complications for Bella. Bella also has the issue of dealing with chronic pancreatititis pain which can ‘flare up’ following this procedure. This would be dire for Bella going into transplant, as complications arising from the fertility preservation process could set her back & jeopardize her road to transplant.
In addition, knowing that she has already had 2.3yrs of cyctotoxic chemo coursed through her body in addition to her individually bad, cytogenetics, do we really want her to genetically create another human being who has a high chance of carrying the defective gene(s)?????
Bella has been through so much. As her parent, advocate I truly just want what is best for her-ethics considered.
Food for thought.🤔🤔🤔🤔🤔🤔🤔🤔🤔🤔🤔
So last night we were invited to Challenge’s parent dinner. This wonderful org puts on a delicious 2 course meal to help make our cancer journey easier.
They organise volunteers to come sit & play with the children so parents can relax & enjoy one another’s company.
We all did, just that. Thank you Challenge. 👏👏👏👏👏👏
This allowed Bella & Olivia to spend time together. Bond.
At the end of the night when it was time for Olivia to leave, she quickly darted for the bathroom (to delay the goodbye process with mummy). Thankfully Futoshi pappy grabbed her arm & gently told her it was time to go home with Ma 3 Sarina.
I kissed & hugged her. She asked again, “Why do you say next week you will come home? Why not this week? ”
To which I replied, “Olivia perhaps when you grow up, you can be a scientist who can safely & effectively CLONE mummy. So that I can be in 2 places at the same time???”
This was her response: “Well, I only want the REAL you. Bella can have have your clone!!!” 😂😂😂😂😂😂😂😂😂😂😂
Team Bella: Practising Mindfulness. Dealing with our 2nd cancer journey HEAD ON. Taking HUMOUR along for a ride. Learning each day as we walk this path. Sharing our journey to raise AWARENESS. Building resilience. Never give up!!!