Relapse Journey

Day 46: Medical update

Team Bella: Medical update
Day 46, Pre-B ALL, Relapse.

Thank you to Bella’s ARMY of supporters. We are so grateful for your continued love, prayers & positive energy. This helps Team Bella stay on top of our game! πŸ’ͺπŸ‘Š

Re-induction:
We have received the final MRD (min residual disease) following day 29 BMA (bone marrow aspirate) completion of reinduction cycle. If you can recall, Bella obtained an MRD on day 15=0.160. Which indicates lymphoblastic cells responding quite well to the re-induction chemo round.

NB: Minimal residual disease (MRD) is the name given to small numbers of leukaemic cells (cancer cells from the bone marrow) that remain in the patient during treatment, or after treatment when the patient is in remission (no symptoms or signs of disease).

Unfortunately, the day 29 MRD for Bella indicates that the cancer/lymphoblastic cells are becoming resistent to the chemo regime or the lymphoblastic cells may have mutated, thus building a higher resistence to the chemotherapy drugs administered.

MRD Day 29= 0.462.

Obviously this is a disappointing result for Team Bella because the MRD has increased following end of intense chemo cycle! We had hoped the MRD would trend towards a remission result (i.e MRD= 0.01- negative ).

Team Bella is undeterred by this result! We had a very positive meeting with Bella’s Consultant Oncologist, Dr Rachel Conyers this week. There is a game plan which provides Bella with multiple treatments (including BMT) which aims to provide her with a CURE. They are throwing all available therapies avail in Australia to provide Bella with the highest chance at survival/remission from this insidious disease.

Unrelated BMD Matches
Rachel advised me they had checked for matches against the 10 HLA markers for Bella’s bone marrow & we have 2 unrelated donor matches!!! If you understand what the odds are (one in a million), you will understand how AMAZED that Bella has not 1 but 2 unrelated donor matches!

Human leukocyte antigen (HLA) typing is used to match you with a donor for your bone marrow or cord blood transplant. HLA is a protein – or marker – found on most cells in your body. Your immune system uses HLA markers to know which cells belong in your body and which do not.

So, in 2017 when we searched the International BMD registry, Bella’s 2 donors have the following : 1st donor, 8/10 permissible match (male aged 27, lives in U.S). 2nd donor, 9/10 HLA match male aged 37, lives in U.S)
* following all diagnostic/prognostic medical tests on the donors to determine which is the BEST & more ROBUST marrow to transplant to Bella.

Hopefully when we go into BMT this healthy, marrow when transplanted into Bella’s sleeping marrow, following conditioning of Bella’s body will start to produce healthy marrow, thus replacing Bella’s unhealthy marrow. πŸ€”πŸ˜πŸ˜±

Last 2 weeks was aimed at regeneration of Bella’s blood counts. Currently, bloods 5/5/17 Hb=99, Platelets =114, WCC=4.6 & Neutrophils=3.26.

This 2 week period did not come without it’s complications & challenges. I did lose faith in the medical team on multiple occassions due to Bella’s daily developing medical issues, some which could have been avoided. The medical negligence that took place really took its toll on her already frail body. She has dropped down to 16kg yesterday (17.7kg on relapse day) >10% body weight. 😒

Hence I always stress to others as Bella’s mum, carer, I am her best advocate. Her medical history is embedded in my brain. I always have my finger on the pulse. Medical staff like everyone else are human after all. They can sometimes be overworked , understaffed or simply make the wrong decision. They will & did make mistakes in Bella’s care. Thankfully, as each symptom developed I was able to advocate to push for further review.

22/4 Sat – Port infection. We came in as febrile neutropenia. I advised Bella’s port looked red & infected. Onc team decided to run x3, 6 hourly anti’s through 2 drug lines. Amicayson through peripheral on Bella’s arm & vancamycine & tazobactam through her port.

I was concerned as the bacterial infection was located at port-sight. Running antibiotics through that sight, wouldn’t it push bacteria through her body thus exacerbating the sepsis? Onc team reassured me they did this all the time. It usually worked well. Plus they needed a central line access & her port was it. She became increasingly unwell over 24-48hr period. Severe abdo cramping, febrile, nil apetite & bedridden. I had voiced my concern at each am & pm review. But onc team disregarded my concern -saying it was caused by constipation & sepsis. Onc team believed anti’s would eventually improve her situation. I wasn’t so sure. πŸ€”πŸ˜‘

Sun 23/4 I pushed for a review. Trung overnight onc arrived. Bella had been in so much pain -body swelling due to fluid retention & constipation. I requested blood test to identify why she was retaining so much fluid & had continued fever & severe abdo pain. He ordered bloods. I asked him to check what fluid load Bella should be given!

He calculated she should be receiving 58ml/hr. However, onc team ran IV & central line with anti’s through but @ 250ml x3 anti’s every 6hrs (cycle). Omg they had overloaded her poor little body with at least 250ml/hr instead of 58ml/hr (her fluid load threshold). The fluids had effectively diluted her body’s albumin level (was 17, range should be aroundx30-35 in children) thus preventing the protein from helping to absorb fluid into her body. This lead to oedema. At this stage she had increased from 17kg to 21.7kg at final weight b4 a solution was actioned. I knew the increased fluid was not due to food intake as she had not really eaten any food (nil apetite since admission Sat 22/4)! So it was ALL fluid retention.

Solution: albumin administerd IV which removed excess fluid.

Port: I also requested review of port access 23/4 use by infectious team. They arrived Mon 24/4 & advised the infected port definitely needed to be removed!!! Obviously Bella’s port had bacteria growing on it. Flushing anti’s through the port needle would not kill the bacteria already growing on her port. This bacteria most prob came from the bateria found in her gut. But onc team had failed to correctly calculate her fluid load, thus Bella developed oedema which could have been avoided.

She also develped urine retention, continued to have acute abdo pain. Urine retention resolved by administration of frusemide. Mum requested review of this ongoing issue. I asked for an ultra-sound which 3 days later found nothing.I persevered & onc team ordered CT 5/5/17 . Resulting in diagnosis of Pancreatitis.πŸ˜£πŸ™

Sat 27/4 the peripheral vein had also tissued. My family & I picked this up, alerted nurses but they insisted it was constipation. I requested review by after hours onc. DoctorΒ arrived spoke to me over the phone as I was on my way in. I told him Bella appeared to have ASCITIES. He reviewed Bella at her bedside & concurred with my observation. The peripheral had indeed tissued leading to leakage of maintenance fluid (potassium/glucose) into Bella’s abdominal cavity. Imagine if it had occurred at her other foot peripheral, where earlier that day the nurses had administered vincristine.

As if Bella didn’t have enough to deal with! Hence I was dealing with ALL of these acute medical developments daily for Bella. I was not in the right mind-set to post as I needed time to digest the calamities.

Right now, my focus is on Bella’s health & getting her through to BMT and obtaining the best possible outcome. β€πŸ’šπŸ’™

So moving forward, with Bella’s care plan. She will (on Monday re-commence chemo).

Plan:
1. ARM SR-B (R3) Post-induction chemo cycle (minus peg asperaginase) due to diagnosis of pancreatititis (5/5/17). I’d hate to imagine her poor pancreas if I hadn’t pushed & advocated for the onc team to identify underlying reason for her spiking temps & chronic abdo pain. 😫😫

Randomisation from trial completed @ the end of re-induction, Bella did not get access to epratuzumab CD22 (targeted therapy). I have requested Rachel apply on our behalf on compassionate grounds for access to blinatuzumab (CD19).

The next 2 months will be critical as the onc team need to reduce her MRD to zero (if possible). Via a combination of post-induction chemo, accompanied with blinatuzumab (monoclonal anitbody specifically tartgeting lymphoblastic cells).

Bella will then follow with a stem cell transplant (transplantation of her OWN stem cells to counter the toxicity of targeted therapy). Which leads to body conditioning (preparing her body for BMT).

Team Bella: We get it. We are all human. Mistakes can happen. But a GOOD clinician should listen to the parent. We are with our child 24/7. We can help FLAG potential issues. Parents- go with your GUT instincts & get the issue reviewed if you are concerned. Never give up! πŸ’ͺπŸ‘Šβ€πŸ’šπŸ’™πŸ’›πŸ’œ

Relapse Journey

Day 44: She walked in with the sun in her hand

Team Bella: Pre-b, ALL Standard Relapse, Day 44, we are the Humans on Kookaburra.

My time with Olivia is so deeply precious for both of us. ❀❀ Earlier today I had decided to pick her up early from school as a treat. Bella’s physical health had improved somewhat. I was hoping to bring our little ray of sunshine into RCH to help prevent Bella from becoming more clinically depressed. πŸ˜”πŸ˜’

The drive back was overwhelming. I had not seen her since Monday. 😒 I forced myself to hold back the tears. Today was Thursday. That is like a life-time separation for Olivia & I. We usually would not be separated for more than 1-2 days.

As I entered the school, I had to keep it together. The tension built to fever pitch in my mind. I had missed her so terribly.

I saw her little face through the school office reception. She looked so smart , dressed in her school uniform. See? I had missed that transition because Bella & I had been in RCH for 44 days today since ground zero. I told her how gorgeous she looked. Words of affirmation-I know it means so much to her right now.

We went out so she could have back a little CONTROL. Mumma allowed her to choose the venue. Order her favourite meal -burger & chips. We had a gorgeous lunch together just -Chibi & mumma. Bliss. In our own bubble.πŸ˜‰πŸ˜

Then back into the car & in an instant, Olivia knew she had to take the back seat- literally so that we could both work towards pulling Bella out of the dark tunnel she had found too comorting & acceptable. We would not let her think this was acceptable. Olivia & I would try our darnest to pull her out-even if it meant we needed a little help from diaz.

For almost 2 weeks Bella could only manage to lie in bed 20hr of the day. Her muscles wasting away. She had lost so much weight 700g (a lot when you only weighed 17.7kg on relapse. We had encouraged her daily to get out of bed & shower, see her friends or even sit upright in bed to watch TV but she struggled. She just wanted to sleep all day. Sleep all night. πŸ˜ͺπŸ˜•

We felt helpless. She did not have the strength to walk-so we used the wheelchair- a lot. I encouraged her to walk (with our help) to the toilet this week. No motivation, & lack of apetite, she limited her social interactions even with Rosie. 😣😞😒😱😱😱

I got desperate & over the course of the last 3 days, with the doctor’s advice. We gave her 1mg of diazapam. This muscle relaxant had a huge impact on Bella’s mood & physical well-being. After having the dose, within the hour she was often much more relaxed, talkative, willing to socialise- just like her old self before relapse. πŸ˜‰πŸ˜

Everything you do on this journey has a double-edged sword effect *deep sigh*. Some days like today, mummy felt defeated. Olivia found tonight overwhelming too.

Picture this: She walked in with the sun in her hand. Bella’s cumulus clouds washed out her sunlight. πŸ˜”πŸ˜«

Team Bella: Defiant. Treatment life. Not normal. We will fight this. Cancer will NOT win. Family.

Team Bella: Never give up! πŸ‘­πŸ’ͺπŸ‘ŠπŸ’ͺπŸ‘Š

Relapse Journey

Challenge

Dear friends,

I am trying to get behind Challenge’s day in May fundraising event this May. If you would like more time, a day in June, July (whatever day suits the school). Challenge has been supporting our family from day 1 since Bella was diagnosed on 28/3/14 with Acute Lymphoblastic Leukemia & now again during Bella’s Relapse journey.

Some of the ways this INCREDIBLE Paediatric Cancer Support Org has helped our family during this extremely difficult time includes: allowing Olivia to spend much needed special one-on-one time with mummy at playgroup, offering tickets to events so we can spend time as a family (e.g Wiggles concert this year), Dreamworks Disney Rosebud, massages if mummy & carers need it (we do really need it after sleeping so many days on the Green couch at RCH), camps for the children, end of year Christmas party in Sandown & soooo much more! β€πŸ’šπŸ’™πŸ’›πŸ’œ

I am making a shout out to my friends overseas & interstate too! Hoping you could consider organising this at your kid’s schools?? Your grandkids, neices or nephew’s school can also grt behind this great cause! The kids dress up as their superheros to support Bella’s Fight! Our SUPERHERO! Bella & Olivia’s school St Lawrence in Derrimut are in!!

Tag me with photos.😊 It’s easy, each child donates $1 -$2 dollars with all proceeds going back to Challenge so they can continue to support families affected by childhood cancer. 😍😍😍😍

Please contact Dannielle directly for more info! She has a flyer & more info.

Team Bella: Never give up & paying it forward to an organisation who has made our journey that little bit less challenging/stressful.

Thank you Challenge & Bella’s Armyof supporters!
Danielle Jayamaha
Events Coordinator
Challenge – supporting kids with cancer
P: (03) 9329 8474
F: (03) 9329 8427
E: danielle@challenge.org.au
529-535 King St, West Melbourne, VIC 3003
www.challenge.org.au