Relapse Journey

Day 91

Monday afternoon, Alie (nurse coordinator) told me that Rachel (Consultant oncologist) needed to meet with me. The nature of our meeting was not specified, so I assumed it was to discuss the Road Map for the next 2 weeks ahead.

I was not prepared for the BOMBSHELL that was about to hit me during this meeting yesterday afternoon.

Rachel cut straight to the chase, she said, “Vanie, sorry but we cannot use either of the UNRELATED DONOR’S MARROW/STEM CELLS when Bella goes to BMT”. 😱😱😱😱😱😱😱😱

I felt like the four walls of our meeting space had JUST. CAVED. IN.

Rachel quickly explained why, as she registered the devastation on my face. She said, in regards to Bella’s two donors:-

1. Donor A aged 27, had a 8/10 HLA (Human Leukocyte Antigen) match with Bella but he had been exposed to either the Hepatitis B or C 😱😱 virus. 

2.Donor B aged 38, pulled out. He expressed the need to withold from running ALL blood tests until 21/7/17 😱 because he was travelling to South America 😱😱😱 whereby exposing himself to the Zika virus. 

Well, thank you, but no thank you.

Currently with an MRD = 0.027 Bella is considered to be in remission. We do not have time to WAIT (plus we wouldn’t use his marrow post such a high risk trip). Team Bella needs to go to BMT mid July 17′. Delaying the BMT is not an option as we have used chemo which has reduced the MRD to an appropriate level to take her to transplant.

Alternative option????? HAPLO TRANSPLANT.

Haploidentical Stem Cell Transplant. An allogeneic haemopoietic stem cell (HPC) transplant would involve matching a patient’s tissue type, specifically their human leukocyte antigen (HLA) tissue type, with that of a related or unrelated donor.

In Bella’s case, that would mean her parents (related donor) since Olivia was not a match. We are considered Bella’s 2nd best chance for survival as her marrow is too diseased. 😢

Bella is the result of the combined X & Y chromosome from Futoshi & I. So generally speaking, we have a 5/10 compatibility. It may be more once we quantify our bloods etc. Rachel assured me with advances in transplantation, the doctors have a good grasp on managing GvHD (Graft vs Host Disease). There will be other short & long term side effects that Bella will need to deal with post transplant, but we’ll desl with those when we need to cross that bridge.

So yesterday, I went downstairs to complete the transplantation & immunogenetics blood screening to see if I would become the donor.

Tosh will carry out the test today.

Bitter sweet really, when you come to think of it. The beautiful human being we created out of  would end up receiving some of our marrow/ stem cells in order to be given a 2nd chance at life. One of her parents would hopefully be her CURE or life-line.

Bella’s re-birth.

HSCT will exclude TBI treatment thank goodness! Rachel is happy about this too!

So following transplant, Bella will have renewed life, new marrow coursing through her body. But it will come from one of US. 😍😍😍

I will keep you posted on who is the most compatible donor to take Bella to transplant.

This week, our little warrior demonstrated such resilience. She has battled with severe conjunctivitis since Sun night due to the toxicity from Ara-C. Bella hasn’t opened her eyes since early Monday morning. So she has developed coping mechanisms in hospital. She is functioning currently like she is a vision impaired person! I guide her to the toilet, she does art & crafts, watches or listens to the television. She adjusts her body, to her situation.

I am so very proud of her. This battle has taken over half her lifetime. We cannot WAIT to reclaim her life back! Bring it! 💪💪💪💪

Team Bella: this rollercoaster just gets scarier & is so unpredictable by the day, but we just hold on TIGHTER…to fight another day! We won’t back down because Team Bella never gives up!!!! 👊👊💪💪

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