Relapse Journey

Day 0

Bella: 9 months post-treatment. She had her last immunisation today: pneumovax 23. 17.9kg & 112cm tall. She is healthy & happy. I could not ask for more.

Relapse Journey

Day 1: Relapse

Team Bella: Update

It is with an extremely heavy heart that I need to revise my previous post Re: Bella.

Following our oncology review today we were later called back in to RCH to be given the devastating news that our precious Bella had relapsed.

In the coming week the team will conduct more blood tests . She will also do a BMA (Bone marrow aspirate to check for min. residual disease (MRD) . We will need to go through induction (1st stage of ALL treatment -intense chemotherapy) & doctors will assess which treatment protocol they will take thereafter. If she is in remission by the end of induction, then it is probable Bella will continue down the chemo arm. If she doesn’t respond well to the chemo, then she may need to consider targeted therapy/bone marrow transplant (BMT).

We will kick cancer’s butt once again because Bella is a little warrior! She will have the combined strength, power of positivity behind her from an unwavering army of love & support, our family & friends.

Team Bella : Never give up!!!

Relapse Journey

Day 1: Good Spirits

Bella is in good spirits. Next week will be a challenging week for her as we commence induction.

Team Bella :Never give up! πŸŽ—πŸŽ—πŸŽ—πŸŽ—πŸŽ—πŸŽ—πŸŽ—

Relapse Journey

Day 2: Precious Moments

Precious moments: Olivia comes in for a visit. πŸ‘­ bonding.

Bella never enjoys eating the hospital food. But today, feeling inspired by Olivia’s /chibi presence she shared & ate her meal. πŸ˜β€πŸ’šπŸ’™πŸ’œ

Team Bella: Never give up!

Relapse Journey

Day 3: Homemade foods

Obaachan & ojiichan come for a visit. We are so lucky-they brought lunch! We are already ‘over’ hospital food. 😝 Homemade sushi & omusubi (rice balls) & udon noodle soup. 😍🎎🎏🎌🎌🏯 Arigato otosan & okasan

Relapse Journey

Week 1, Day 5: Re-induction

It’s been an extremely busy week for us, hence the delay in my post. I was also waiting results.

Re-induction week 1, day 5.

Following a BMA on Monday 27/3, in a 300 cell count specimen 95% contained blast cells. This is consistent with relapsed ALL. No blast cells were found in her spinal fluid which is great news-the leukemia is contained in her marrow & has not spread to her organs!

As a collective family decision, Team Bella decided to participate in a randomized trial. Without participation, she would not have possible access to epratuzumab (50% chance following randomization). The first randomisation has placed Bella into the SR-B Arm of the clinical trial (UK protocol) instead of the SR-A (German) protocol. It is usually a 118 wk trial. Bella will receive induction, post induction & maintenance therapy according to the protocol.

After regeneration of blood count at day 35 (start of week 6) the cytological remission & the MRD status will be quantified. In layman’s terms, post-induction phase oncology team will do a BMA to assess if the chemo has worked-taking tissue sample from her bone marrow.

Bella will then be randomised to receive or not receive epratuzumab in addition to Consolidation. Epratuzumab is a monoclonal antibody which has been shown in studies to have favourable outcomes in paediatric ALL relapsed patients.

Day 35, if Bella’s MRD (>10 -9 more than 1 leukemic cell out of 10000 mononucleated cells) indicates she is not remission following high-dose chemo, she will have stem cell transplantation/immunotherapy which will be a bridging process to prepare her body for BMT (bone marrow transplant).

If MRD indicates remission on day 35, Bella would continue with maintenance.

It has been a challenging week for Bella healthwise as she commences the gruelling month of chemo. She has already received intrathecal methotrexate following an LP on Monday, dexmethosone, mitoxantone, vincristine, Peg-aspariginase & micafungan (as a preventative measure).

To make this journey manageable, she has had access to the study program, music, play & art therapy to provide structure to an otherwise very clinical day.

Some days she has been very lethargic, other times she has been motivated to get out of bed to walk around the ward & participate in various activities. We are mindful of the cytotoxicity of chemo & it’s side effects on her little body. So it’s a juggling act to prevent her from getting infections, magaging nrutropenia & constipation & many other potentially serious long-term health issues post chemo.

But we also know this treatment is preserving her life & we will always work towards allowing her to one day have a fairly, normal childhood.

I am a strong advocate of awareness & this is the reason we have chosen to share our very personal cancer journey.

Team Bella: Never give up!πŸŽ—πŸŽ—πŸŽ—πŸŽ—πŸŽ—πŸŽ—πŸŽ—

Relapse Journey

3 Years Ago

OMG this came up 😒. Three years ago on 28/3/14 she was first diagnosed.

3 years later, 2.3yrs worth of chemo & we’re back at this juncture.

Thankfully, we have several treatment options available to treat her relapse. β€πŸ’šπŸ’™πŸ’›

Team Bella

Relapse Journey

Special Time-out

This journey is not only difficult on the patient, but will have life-long imprint /impact on their sibbling(s). It becomes a juggling act b/w giving yourself to the patient & trying to juggle the time you devote to your other child/children.

It pains me each night when I go to sleep on my green couch at RCH. Away from my little Olivia. 😒

Esp when we say our ‘goodbyes’ at the ward exit & Olivia doesn’t want to let go of our hug. 😒 We are ONLY 1 week into our relapsed cancer journey. 😨😩

I share an onc mum’s journal because it has helped put life into perspective.Β Appreciating my “special time-out” with Olivia.

Relapse Journey

Visitors at Kookaburra Ward

Bella’s week was brightened by some very special people who came to visit at Kookaburra Ward, at the Royal Children’s Hospital.

Bella’s Army: love, strength, courage, positive energy, support.

Bella is currently experiencing symptomatic effects of the chemo & steriods. Often constipated & lethargic. Although our little princess was quiet, and reserved, she appreciated everybody taking the time out of their busy lives to pay her a visit this week & weekend.

So proud of my little warrior.

Team Bella : Never give up!

Relapse Journey

Week 2, Day 9

Re-induction phase
Purpose : remove all visible signs of Leukaemia & allow normal cells to be restored.

Week 2, induction, day 9: Bella went into theatre this morning for her LP (intrathecal methotrexate). She also had a nasogastric (NG) tube inserted.

Over the past week, she has been exceptionally tired & constipated due to the chemo. Her platelets are only 29, neutrophils 0.69. She is eating really well due to the dexmethosone (steroids).

It became increasingly difficult for Bella to swallow all of her medications pertinent to her care, hence we have opted to have the NG tube inserted early into her treatment. It allows the wonderful nurses to ‘flush’ all oral meds down the tube without Bella having to take them. Later down the track it will also allow the oncology team to organise nutrition via thd NG tube when she cannot maintain a healthy diet due to the chemotherapy treatment.

The NG removes one extra clinical process, which is often traumatic & challenging thing for anyone having to take up to 10 medications daily, let alone a 7 year old.

We are so very proud of the way she has carried herself these past 2 weeks. It’s a very overwhelming journey but she has taken it all in her stride.

After 12 days in a double room we’ve finally moved into a single room. Yay! Hopefully will have a more well-rested sleep!

Team Bella: Never give up! πŸ’™πŸ’šβ€πŸ’›πŸ’œ