Relapse Journey

Week 2, Day 11

Bella was quite fatigued for most of the day. Vincristine push. Her neutrophils had dropped to 0.02- neutropenic). Platelets 15 & Haemoglobin (Hb) 74. I had discussed with the doctors her need to transfuse. Thankfully they agreed & the platelets came this afternoon. As soon as the liquid gold went in, she was up walking around with so much more energy! That’s my baby! Tomorrow she have Hb transfusion.

Tonight though, with her counts/immunity wiped, she has become febrile. Infection brewing…😔 Antibiotics already going through her line.

Team Bella: Never give up!

Relapse Journey

Day 17: Some reprieve

Re-induction, day 17. Bella was granted some reprieve, as she was de-accessed (due to the need for a port needle change). Freedom from her IV pole to have a wander downstairs! Nice surprise considering today was day 17, ALL standard relapse. Mummy was already going ‘stir-crazy’ and I can leave the ward! It wasn’t too risky taking her downstairs as RCH is quiet on Sundays.😉

Bella is fully neutropenic! Neuts=0 (zero reading recorded today), Hb=74, platelets= 73, Hb=94, WCC=0.6. Even with transfusions, her platelets & Hb has dropped rapidly after transfusion of both over the last 4 days. RCH transfuse a patient’s platelets @~ platelets=15 =70=Hb. To go to theatre, threshold platelets at least =30 not less). Lethargy remains a constant companion for Bella & other onc patients.

Since anti’s administered 2 days ago (amic & taz, these are broad spectrum anti’s used by the team), Bella has been afebrile. To date, she has experienced thinning of her hair (which we’ve both noticed) & severe case of mucositis in her gastrointestinal tract (mouth, throat, stomach & bowel). The tract is lined with epithelial cells (rapidly dividing cells). Chemo kills these cells along with the blast/cancer cells. 🙁 Side effects include extreme pain when she opens her bowels (skin is broken & inflamed). She often cries during the process-but calms down after hugs & reassurance that lignacane will help to numb the pain once I put some more on. Salt baths have also assisted. Thankfully she hasn’t had severe mouth mucositis yet, so her appetite is good. Nutrition, is not a huge issue currently for Bella.

Tonight we had our 1st melt-down. She refused to take endone (pain meds charted). Reason: she knews it caused constipation & my poor baby girl was petrified of being constipated, with the added complication of mucositis. I understood. It pained me deeply- understanding her logic/pysche behind refusal of this drug. We administered it anyway, because I could not bare to see her in so much pain. It’s then a fine line b/w managing her constipation & ensuring she opens her bowel (daily, soft stool). I try to stay on top of her bowel movements so we can assist in management of Bella’s daily, developing medical issues.

For me, advocacy is so important in our child’s journey. At this age, you cannot expect them to make the best/most well-informed decisions.😍Bella’s resilience, acceptance & tolerance of her journey-is something I admire deeply.

Other than these issues, Bella remains positive & happy (besides some steroid rage 😂).

💚💙💜

Childhood Cancer Awareness 🎗🎗
Team Bella: taking one day at a time.💪👊

Relapse Journey

No chemo today

Bella has bounced back today! No chemo, BMA in theatre to obtain MRD following 1st of 2 cycles within the 29 day induction phase. *fingers crossed* her leukaemia cells have responded well to the chemo. But final results will be the BMA at the end of induction. 😉

Neuts are still are big fat zero which is to be expected at this stage into her induction cycle.

Mucositis has almost cleared up! It’s amazing how much their health fluctuates from day to day.

Team Bella: Never give up!

Relapse Journey

Mummy & Olivia time

Morning snuggles with this little munchkin. 😜 We miss eachother so much when I am in caring for Bella.

It had been 20 days since I had been home. Gosh I miss my bed too! I appreciate the green couch-but it is not so nice on your back! 😫😩

Relapse Journey

Day 16: Results from our first BMA

Update Team Bella:
We received results from our first BMA (day 16) this week. Bella’s MRD was 0.16. This is a good result-it means that Bella has responded well to the chemo protocol over the past 2 weeks. The chemo has been able to attack the lymphoblastic cells. *fingers crossed* for an even better result at the end of re-induction.

Bella’s health continues to fluctuate on a daily basis. At 3am this morning she experienced severe abdominal cramping. We used all available pain meds charted for Bella to no avail. She also threw up the Nutrini feed we commenced at 5ml/hr to top up her nutrition. Tonight, I’ve decided not to run the feeds as her gut is just not coping, following vincristine push & Peg-aspariginase administered on Thursday.

By late morning, the pain subsided & she perked up. Bella was able to enjoy some of the action taking place at RCH today, for the Good Friday Appeal. Our family were happy to lend a helping hand to be involved in supporting the wonderful work RCH delivers.

Thank you to all of the volunteers who put a smile on all of the kids faces! To our family & friends who have donated to a great cause-& given us so much love & support -THANK YOU.

Team Bella: Never give up! 🎗😆

Relapse Journey

Siblings

I wanted to share the sibling side of a cancer journey. It is tough-being separated from mummy & big sister.😢 It was challenging for Olivia aged 3 when Bella was 1st diagnosed, & even more challenging now at 6 yrs. They can become ‘lost’ in the chaos of treatment. She now understands we are in it for the long haul. 😔

This is what oncology families with sibling(s) deal with. Life still has to go on (outside of RCH walls). Olivia still needs to attend school. Lunch still needs to be made. She still needs to complete her homework. Someone needs to give her good night kisses. Bedtime stories. Just simply being a child.

Bella’s diagnosis & subsequent relapse forces you to re-evaluate life. Take stock. Plan. Puts life into perspective.

Thankfully, we are blessed with an army of supporters. You know who you are.

Team Bella

Relapse Journey

Bone Marrow Donation

Dear friends,

I chose to share Bella’s journey to raise awareness about Childhood Cancer & how is relates to the life giving blood donations & the bone marrow donor registry. Advocacy & awareness is very close to my heart.

The registry requires more donors to increase genetic diversity on the BMDR (Bone Marrow Donor Registry).

Many people around the world including children diagnosed with cancer (including our Bella ) require healthy bone marrow from a donor. A leukemia patient cannot produce healthy marrow.

A recipient can obtain a match from an unrelated donor. But we need to encourage ppl in the community to consider registration on the Australian Bone Marrow Donor registry.

Our family (including Olivia-sibbling) was not a match. Both Tosh & I are only ever going to be 50% match for Bella as 50% of her genetic make-up comes from X chromosome (mum) & Y chromosome (dad).

When doctors can no longer use chemo as means to attack the cancer cells, they may go to BMT (Bone marrow transplant). But the donor needs to have a similar genetic make-up to the recipient.

Thankfully, due to the generosity of a donor Bella has an unrelated donor match @ 94%, who is in his 20s from the U.S. Bella’s nationality is 50% Japanese, 25% Vietnamese, 25% Chinese. So this donor match person has this background also. To obtain a marrow match is not as simple as giving blood & being able to receive blood from someone with the same blood type.

To be a donor is easy. You register with ABMDR via Blood Bank & if you are a match, that is the only time the ABMDR will contact you. You need to be aged between 18 & 45 years old.

Did you know when the hospital extracts the marrow from the donor, they only require a small amount of marrow from your healthy marrow? It is a 2 hour procedure? Usually, you won’t need to take more than 1/2 day off from work!

BMT has saved countless lives. Please consider becoming a donor. Contact Australian Red Cross Blood Bank for more information 13 14 95.

Please share to raise awareness & help save lives!

Team Bella : Never give up! 🎗 💚💙

“I held her tight and whispered in her ear that it was ok. It was ok for her to let go.”

“She suffered things you and I would not cope with.”

Source: www.mamamia.com.au/acute-myeloid-leukaemia/?utm_source=Salesforce

Relapse Journey

Day 25: Free as a bird

Day 25: Bella needed a port needle change -so the nurses allowed her to be de-accessed & “free” from the confines of Kookaburra Ward & her IV pole for a couple hours! Yipee! She has never once been upset about not being able to leave the ward. Resilience beyond her years.

A wander downstairs for Team Bella – but we needed to be careful as she is neutropenic. A nice quiet, clean table to have a relaxed dinner 🍕🍕🍟with loved ones. Thank you for bringing dinner Ma 6 & Duong Phong.

Counts are pretty much the same. Low. Hair loss is now quite aggressive. She is prepared though.😔

Team Bella : free as a bird🕊🤗🙄🕊

Relapse Journey

Fight Song

Tosh, Olivia & I were travelling in the car yesterday when this song came on. In that moment/heartbeat, I knew this would be Team Bella’s “song”. I love the lyrics because it resonates with with the challenging journey we are embarking on once again!

Each morning when the sun rises, I sit in our room. I can feel so much positive light & love out there in the universe -coming from all of our supporters from all over the world. Thank you.

Team Bella you all so much & appreciates & draws strength from the LOVE & CONNECTION we have with each one of you.

Team Bella: Never give up! 🎗 💚💙

Fight Song
Rachel Platten
Lyrics

Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion
And all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?
This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me
Losing friends and I’m chasing sleep
Everybody’s worried about me
In too deep
Say I’m in too deep (in too deep)
And it’s been two years I miss my home
But there’s a fire burning in my bones
Still believe
Yeah, I still believe
And all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?
This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me
A lot of fight left in me
Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion
This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong (I’ll be strong)
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me
Know I’ve still got a lot of fight left in me

Songwriters: Dave Bassett / Rachel Platten
Fight Song lyrics © Sony/ATV Music Publishing

Attached is the 1000 tiny cranes my sister-in-law Vicky & brother-in-law Tsubasa folded for us in Japan when Bella was first diagnosed 2014. It sits proudly in Bella’s room at RCH. Origami.

Team Bella 💪👊