Advocacy, Relapse Journey

DADPCA Team Bella Fundraiser

Featured Photo by Marlene Sayson Photographer

“On Saturday July 29th, the Derrimut and Deer Park Community Association Inc. is running our first event – a fundraiser for Bella, a girl in our community with Acute Lymphoblastic Leukaemia. The event will be held on Saturday the 29th July from 10am to 4pm at the YMCA Derrimut Community Centre!

As well as raising money for Team Bella and the charities that support her, the event will be a celebration of our great community that has come together to support her.  Meet the neighbours, have a sausage in bread, jump on the jumping castle, dress as your favourite superhero, and learn some new dance or Taekwondo moves, and see how far your paper plane can go.  Or, show us your amazing multitasking skills by doing all of these at the same time!”

Relapse Journey

Fight Song by Rachel Platten

Hello friends,

We are hoping to do a massive crowd dance tomorrow to “Fight Song, by Rachel Platten”. It is sort of like a flash mob dance as we have NEVER practised it & but it will be fun. Anyone can join in! Think of it as raising awareness for our causes CHILDHOOD CANCER/BLOOD DONATIONS/ABMDR etc. Don’t worry, we’ll all look silly together in the name of Childhood cancer 😂. We will have an aerial shot as my good friend will document it with his drone…

If you don’t want to be filmed/included that’s cool. I will put this into a combined video & place it on our Team Bella website (which I will also launch) at the fundraiser today to document Bella’s journey.

For Team Bella supporters interstate or overseas, if you could get someone to film you doing a sequence of the dance (doesn’t need to be entire dance) we can piece it together for to be included in the video clip. Send it to be via FB messenger. 😁

Looking forward to seeing everyone tomorrow! I will be there from 9.30-10am onwards. C’mon let’s do this to get 1 million views! Raising awareness for a good cause! 🎗🎗🎗🎗🎗

Team Bella: Never give up! 👊 💪  💚 💙 💛

Relapse Journey

Day -10 (commencement of pre-conditioning)

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!!! 👊 💪💚💙💛💜

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Relapse Journey

Day 120: Pre-B ALL, Standard Relapse

Team Bella is feeling both excited & nervous as we head into BMT. This week has been hectic with the requirement to go through all relevant tests again prior to going into BMT.

Tue this week, we completed an ECG, ECHO & Respiratory function tests. Bella’s results were good! 👍

As her donor, I needed to have full bloods done again (Bella’s oncologist had changed her transplant date to 3/8/17). These tests would ensure I was healthy & it would be safe for Peter Mac to harvest my stem cells for Bella on 1/8/17.

CT (computed tomography scan): We went downstairs to medical imaging where the nurses canulated her arm so the radiographer could infuse contrast into her peripheral line. I also had to aspirate 160ml of contrast down her NG tube. The contrast allows her entire body to light up. Detailed images of internal organs are obtained by this type of X-ray device. The CT scan can reveal anatomic details of internal organs that cannot be seen in conventional X-rays.

Our oncologist was very pleased with Bella’s progress following 6 days at home. She commended Bella on her weight gain, & Bella’s physical & mental health had improved greatly compared to when she was in hospital. Home=best medicine 😁. Great job Team Bella!

I consciously kept her feeds high & continous in an effort to increase her weight.😊 She does not eat well during treatment as chemo & a deconditioned body can cause loss of appetite. Food often has a metallic taste 😝

Any major medical procedure (in Bella’s case under-going an organ transplant & inheriting new marrow courtesy of mum’s stem cells), mortality is heightened when the patient is either very underweight or obese. Bella is significantly underweight. 😔 Today she weighed 16.6kg (after she opened her bowels! Yay! Mum did the poop dance this morning 😂😂)

We are now in theatre after a 2.5hr wait 😫 Bella has gone under GA (general anaesthesia) so the doctors can perform a BMA as our oncologist wanted to review her marrow. It will be interesting to see what her MRD (Minimum residual disease) result is considering we last had chemo in mid June.

Count down to transplant is on! 4 more sleeps! Next Monday Bella will be admitted into transplant ward. She will be in isolation (remains in her transplant room) until her marrow has engrafted….it generally takes 6-8 weeks, but each patient is different 😉.

Team Bella: Excited about Bella’s new healthy marrow…& nervous heading into transplant but we will Never give up! 😊💪👊👍

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Relapse Journey

Day 114

Today, Bella removed her inpatient hospital body suit & wore her home life, 7yr old child one. It is the best feeling for a mother to see the transformation from hospital to home. 

Bella’s Berlin wall dissipates and she is less withdrawn, depressed & is so happy to just be herself.

She spent the day with her little friends & I did not connect her to her nasogastric feed. This would hold her back from feeling like a normal kid. I watched as she laughed, ran upstairs, played celebrity head, UNO & did the regular things 7 year olds do. 

As a family going through this journey -it totally keeps you grounded. It makes you grateful for the little things in life, like being able to organise play dates. Our oncology life doesn’t allow for much planning-so I tend to ‘wing’ things last minute. Thankfully it’s the last day of school holidays & some of her closest friends were available to spend some quality time with her before transplant.

Bella has emotionally & mentally been so well on this discharge that we’ve taken only 1/3 of her usual medications. She hasn’t experienced the constant abdominal cramps, headaches & focal point pain (esp. in her legs). Perhaps being in the hospital precipitates the clinical symptoms including reducing one’s mental stamina? When we are in, she requests meds on a 2-3 hrly basis. In the past 2 days, she’s not even asked for ANY pain mgt (I have 14 diff meds in my medical bag to help her manage the various side effects of treatment ). We even managed a Hospital in Home (HIH) nurse visit today at 12pm to administer the Ampho Liposomal-all the while having lunch! Multi-tasking is our middle name! 😂😂

Team Bella: We  home life. Friends are the best medicine. 👭👭👭👭

 

Relapse Journey

Day 113

Pre-B ALL Standard Relapse

Bella has now come off the International clinical trial for Standard ALL-Pre-B Relapse. We finished chemo cycle 11 & will complete the remainder of her Relapse treatment in transplant.

Bella’s body really struggled with the toxicity from Ara-C & the last chemo cycle. She suffered from inflammation of her secum (surgeons found air pockets in her colon) which they kept a close eye on as a rupture would cause havoc esp. an immunocompromised individual. Diagnosis: tifilitis. She also developed a hemoroid due to the side effects of chemo leading to constipation. Thankfully, she is on the mend now. The remainder of her relapse treatment will be done in transplant when she goes through pre-conditioning.

We have not had chemo in over 3 weeks. Bella struggled medically as her body was so deconditioned due to the affects of HD chemo. So she needed a little help. For 7 days, the nursing team gave her G-CSF (granulocyte colony stimulating factor). It was given via insulflon -daily subcutaneous injections.

G-CSF is a type of growth factor.

Growth factors are proteins made in the body and some of them make the bone marrow produce blood cells. G-CSF makes the bone marrow which produce white blood cells to reduce the risk of infection after chemotherapy.

G-CSF worked well to help stimulate Bella’s white cells thus, boosting her immunity. Her neutrophils rose up to 1.67 10/7. Once they stopped the injections, her neuts stabilised on 12/7/17 at 0.77 on their own. During this 4 week period, she has had 4 platelet & 3 haemoglobin transfusions. Yesterday they transfused her platelets prior to discharge but there was a delay as the Red Cross were once again short on platelet supply. 😔 So thank you to all of the blood donors out there!! Team Bella are forever grateful! 😍😍

We will be home for 12 days! With HIH (Hospital in Home) arriving Mon, Wed & Fri to administer Amphotericin B Liposomal (Ambisome). No, this is not the toxic version which caused the nephrotoxicity to Bella back in 2014!

Team Bella is going to enjoy much needed home life before going into transplant. I have placed her on a CLEAN diet (or lysteria free diet) to ensure she remains well prior to transplant.

Team Bella: Never give up! 👊👊💪💪

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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! 💪💪👊👊

 

Relapse Journey

Sisters

They say a picture tells a thousand words. 

After 2 weeks apart (Olivia had been unwell) it was HEAVENLY watching their sisterly interactions.

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