Relapse Journey

Day 105

Pre-B ALL Standard Relapse.

It’s been another busy fortnight for Team Bella. I explained the feelings to a friend the other day. I said, DIAGNOSIS is like being thrown on a kiddie coaster that you had NO intention of riding. In RELAPSE you’re on another roller coaster. Except this time, it’s a MOTHER of all roller coasters! Expect the unexpected! Exhausting in so many ways 😣.

Since we were informed that both matched donors for Bella had fallen through, our oncologist has moved quickly (same day!) to arrange for Tosh & I to have the relevant blood tests done. The results would enable RCH to make an informed choice on which parent would be the best matched donor to take Bella to transplant.

We waited with baited breath. Last Friday RCH had selected ME. Wow, I would give my precious Bella the gift of life. Mother & daughter have indeed come full circle. I did not see that coming.

BMT DONOR testing & TISSUE TYPING:

RMH informed me I was a 6/10 HLA match with Bella following the detailed blood analysis. It’s funny how the universe works. I was asked if I wanted to become an organ & blood donor back at uni (some 22yrs ago) & here I am giving the gift of life to my own daughter. I would happily offer to donate my stem cells /marrow again to an unrelated recipient tomorrow, if the BMDR ever called upon me to say I was a MATCH. Giving the gift of life is truly a BLESSING, regardless of who you offer it to.

WHAT’S INVOLVED IN BECOMING A BONE MARROW DONOR?

You need to be aged 18-45 years of age & be fairly healthy. Complete a full medical, including chest x-ray , medical meeting with a BMT doctor & blood tests (4hrs in total) at the Royal Melb Hodpital (RMH).

The BMT process is quite straight forward really. Yes you will be required to set aside some time & take injections over 4 days, but placed into context, you are about to SAVE another human being’s life literally! 😱😍 I will be donating my STEM CELLS to Bella. The process is called Haemopoietic Progenitor Cell-Apheresis (HPC-A).

HPC’s are found in the bone marrow & are capable of making all the different types (red cells, white cells & platelets).

HPCs may be harvested directly from your marrow or, as in my situation, from the bloodstream (peripheral from your arm) by a process called APHERESIS.

To increase the number of blood HPCs & release them from the bone marrow into the blood stream, the donor receives subcutaneous (under the skin) injections of Granulocyte Colony Stimulating Factor (G-CSF) for 4 days before the collection. G-CSF is a synthetic copy of the naturally occurring BONE MARROW HORMONE.

WHY ARE HAEMOPOIETIC PROGENITOR cells used?

Bella & other onc patients have received high dose chemo to eliminate the leukaemic cells. This chemo treatment eliminates the healthy HPCs. Healthy HPCs will be donated by the donor (me) & transfused into Bella to replace the destroyed cells.

HARVESTING STEM CELLS for Bella

On Day 5, following 4 day course of G-CSF, the apheresis procedure is performed using a blood separator. The donor’s blood is removed via a needle in one arm, the HPCs are collected & the remaining blood is returned to the donor. This is a 4hr procedure carried out at Peter Mac Cancer Centre.

The donor can leave the collection centre after the procedure, following some refreshments.

A bone marrow collection may be required under GA if there are insufficient numbers of HPCs.

RISKS?

Bone/ muscle pain for a couple days (possibly)! Medical team suggested taking panadol 😊Global data collected from BMDR suggests no long term effects of G-CSF on the donor.

Update on Bella:

The last 7 days Bella has been quite unwell. The onc team could not find the underlying cause of her infection. Bella was on multiple broad spectrum antibiotics & ambisome (antifungal) but her she was febrile every day! So they decided to carry out a CT scan. The scan identified air pockets present in her colon. This inflammation of her secum had been causing the infection & temp. The condition is called tifilitis.

The surgeons who reviewed her CT scan have now advised Bella needs to rest her gut. Nil by mouth since 2 days ago. She is now on TPN & metronidazole. An antibiotic specifically targeting colon bacteria.

She also lost all of her eyelashes this week 😫 (prob due to Ara -C). Bella has also had 2 Hb & 2 platelet transfusions as her body is so deconditioned at this phase of her treatment. She reacted to the platelets this week! Her 1st reaction to blood products in 3 years. So the nurses give her an antihistamine prior to transfusion now.

Thank you to all of our generous donors out there!

I am pleased to report that Bella’s health has improved. No fevers/afebrile since Monday.😁

Thank you for following our journey. I hope I have been able to shed some light RE: Bone marrow donation in the hope it will encourage others who are considering becoming a donor to register. No one needs to die. By donating your stem cells/ marrow it may just happen to save a person’s life. 

We have also had a very CHALLENGING (week as we have lost a  one suddenly 😢)

It’s exceptionally nerve wrecking moving into BMT as Bella’s already frail body will be placed under immense stress in pre-conditioning & BMT but like always, TEAM BELLA will go into the ring with everything we have. 💪💪👊👊

TRANSPLANT DATE:

Potentially we will be moved from onc ward into BMT ward by 10/7. Transplant date is potentially 20/7/17. Our onc may revise & push back these dates due to Bella’s recent infection.

So we will need all of those beautiful positive thoughts, prayers & energy coming from the universe from all of Bella’s Army!!!

THANK YOU for all of your  & support!

Team Bella: Never give up! 💪💪👊👊

 

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