Relapse Journey

This journey is tough, but we’re built tougher. BMT #2 Day +63.

Team Bella Update
Pre-B, ALL, Relapse, BMT #2 Day +63.

Transitioning to life on the outside is challenging, but we are taking one day at a time…

Today, Bella went into theatre under GA for her day +60 BMA (bone marrow aspirate ) & LP (lumbar puncture) to obtain Chimerism & other hormone & organ functions results. Our previous day +30 achieved a near perfect result @ 99% engraftment so we are hoping for another good result for Bella’s 2nd month following her BMT. Upon review (bi-weekly) doctors are really pleased with her progress. No GvHD so far.

We’ve been home for approximately 2 weeks. Our first week was like a train wreck. Interactions between our family were somewhat “dysfunctional/strained “. Can you blame us after 7 months of literally living @ RCH with Bella’s life hanging on tenterhooks? +!!?+ we are all exhausted.

I have compartmentalised her caring needs because this looking after a child post-BMT is complex. Breaking down the different aspects of care helps provide structure/focus for us as a family:

Medical (medicines) are slowly reducing in quantity. Thank goodness! Her health appears to be improving from week to week. We went home from BMT in early Nov, discharged with 15 meds. This morning Dad gave her 6. Win win!

Diabetes: this part of her medical care has been intense. 4 finger pricks per day before food to follow her blood sugar glucose levels (BSG) & subcut/injection of Lantus (slow release insulin) each night. Good news is, this Steriod Induced Diabetes may have cleared. Last 2 nights we’ve withheld insulin & her BSG was within range. So this week we might cease diabetes care. Woohoo!

Academic: school based work has been challenging. Bella is still living in hospital mode mentally. She enjoys watching tv at all hours. So I structure tv to allow her to choose 4 days in which she can watch, the others I encourage playtime. She’d sit there 24/7 if she could! She doesn’t want to repeat Grade 2 (otherwise she’d end up in the same grade as her younger sister Olivia next year!) So we are going to support her through home schooling through summer. She is trying but it’s very hard when some days you feel like crap…

Physio: Her body is still physically deconditioned. Thankfully, RCH physio have provided me with a ‘cheat sheet’. A guide/ideas to help encourage muscle strengthening & improving endurance. I took her to the park today. Bella slid down a massive slide & she rode her bike this past week, so things are definitely improving.

Diet/nutrician: We have struggled on & off throughout each week with keeping the Peptamin Jnr feed down.  The previous week she threw up her NG tube twice resulting in x2 visits to RCH to have it re-inserted. I have since overlapped the anti-medics to help reduce nausea. When we prepare the feed it’s identical to baby formula milk. We aim to give her 1000ml/day. Bella still grazes over food so nutrition via NG tube is pertinent in continual improved health for Bella. I must admit, with each passing week, she is requesting more varied foods & has started to eat vegetables! Yay!

Coupled with regular parenting duties to include a 6yr old sibling-our journey has been nothing short of full-on.  House maintenance for a BMT patient & school runs + cooking fresh food most days as Bella is on a CLEAN diet is pretty exhausting. Tosh & I are knackered by 10pm! Last night she wanted to watch a movie as she wasn’t sleepy following a big afternoon nap.

Transitioning from hospital to home has been a roller-coaster ride but it’s safe to say we are in control of when we want to disembark. Well, Bella’s recovery will dictate that actually! Thank you to our families who are always there for us & of course our ARMY of supporters. We love you.

Now fingers crossed for a great chimerism result from Day +60!

Team Bella : Doing it tough but I think we’re built tougher!

Relapse Journey

Dancing through a Revolving Door

Team Bella Update:
Pre-B ALL (high risk), Standard Relapse, Post BMT #2, Day +49.

Team Bella dancing through RCH’s revolving door….

It’s been a huge roller-coaster fortnight for Team Bella. Discharged last Wednesday 10/11, day oncology review on Friday 12/11 & emergency department (ED) by Saturday 13/11.

Bella spiked a temp at 38.2 degrees so following protocol, we came into RCH. Olivia was devastated when she saw me reach for the thermometer. Face forelorn, she uttered, “But mummy, you’ve only just been back three days!!”

We came into ED & Bella’s perma-cath was re-accessed where she was given Flucloxacillin & Ceftazidime (antibacterials). Apparently, there is a worldwide shortage of Tazocin (the broad spectrum antibiotic we usually take).

Getting Ready to Leave the Royal Children’s Hospital

Bella’s bloods have been cultured daily & thankfully have shown to be negative for infections since admission. She has also been afebrile since admission.

We saw the consultant today, late afternoon & Di advised us Bella could go home tomorrow! Yay! Shortest admission in 7 months! Only 3 nights?? Unheard of for Team Bella. Our previous admissions ranged from 42, 64 & 108 days so this was a welcome downward trend.

Bella’s Steriod Induced Diabetes is slowly getting under control. Endincrinlogy have further reduced her Lantis dose to 3 which has been a great. Something I have requested for the past month as the insulin has been causing the hypoglycemic episodes for Bella. Hopefully, the diabetes will resolve over time.

Three days of coming together as a family was just amazing. You don’t take anything for granted. We realise being ~+50 day post BMT places Bella in a high risk category. So we are not taking any chances.

Team Bella: Over the moon about our discharge tomorrow.

Sisters reunited soon.

Relapse Journey

Discharge Eve – Day +43, BMT #2

Pre-B, ALL Deletion p-16, Standard Relapse, Day +43 BMT #2, 107 days in the transplant ward (3 months, 7 days), 230 days since relapse.

Papa & Bella playing their favourite board game Monopoly at the moment. It’s addictive-they’ve played it daily since last week!

Tis’ the eve before discharge.

Nearly three quarters of 2017 have been spent inside RCH. 😣 I can unashamedly & unequivocally say that tomorrow will feel like Christmas for our family. 😍

We are so, so proud of what Bella has accomplished. She has faught against all odds, to engraft (we did not have a great prognosis going into BMT #2). Her little body persevered & here we are tonight. On the cusp of being released from the 4 wall confines we’ve called ‘home’ for the past 15 weeks. Bella, a geneticalledy improved ‘chimeric’ human being. Diseased bone marrow replaced, new healthy donor Tosh (Dad)’s marrow in.

Through lots of blood, sweat & tears, Bella is going home! She was weaned from the intravenous (IV) pole this past week. No longer attached! Although reluctant at first (she was scared) a feeling so alien to her-to not have the pole following her around like a “third leg”. All +15 medications & to pass down her nasogastric tube & 1 injection along with 5 daily finger pricks (to test blood sugar glucose levels) from here on in. Even though she does not have to swallow them orally, taking loads of meds does cause abdominal cramping/discomfort. It’s totally understandable, her reluctance at transitioning from IV to oral intake through her NG tube.

She has achieved steady progress over the past week. Her stamina has improved, she has started eating/grazing over solids in addition to trophic feeds running at 40ml/hr continuously. Her mood has had a marked improvement once she realised ‘home’ was truly on the cards.😊 We are still struggling to manage her diabetes as the Lantis may be causing her to become hypoglycemic most evenings once she has the injection. It’s mucking up the pancreas, so I am pushing towards a protocol of no insulin injection before we leave 😣 We hope to have an improved plan with endincrinlogy by tomorrow morning!

Thank you once again to ALL of our supportors out there! We did not do this alone! 👣

Team Bella hope all our family & friends had a lovely Melbourne Cup holiday & that you backed a winner!

Bella might be galloping out of Kookaburra ward tomorrow! 😂

Team Bella : Never give up! 👊 💪

Relapse Journey

So close to the finishing line… Day +36, BMT #2

Pre-B ALL (High Risk) Deletion p16, Standard Relapse, BMT #2, Day +36 , 225 days since relapse. Week 14 in BMT.

Bella has had a pretty uneventful week (which is what we want!) Last week, we were informed that Bella needed some special cells as she still had the CMV (Cytomegalovirus) in her bloodstream. Rachel told me she considered Bella at ‘high risk’ due to her overall medical background. If we were discharged with a new bone marrow factory, things could go downhill quickly. The CMV carries pneumonia -like symptoms.  So when Dr Rachel asked for my permission to go ahead with the procedure, it was a no brainer. I asked her, “Where do I sign?!”

The lymphocytes would come from an unrelated donor whose cells had been frozen from a previous donation. Bella’s donor was sourced from the Australian registry with 2/10 HLA (Human Leukocyte Antigen ) bone marrow match for Bella.

The infusion occurred last Friday 27/10/17. It built to an anticlimax as we waited for the pathology person to march down the BMT ward with the cooler box. We could hear him passing the instructions onto the nurses. “Please do it quickly. They have now been thawed. 1.7ml.”

So the cells went in which will hopefully provide Bella with antibodies to protect her from the CMV for the next 3-4 years. This one procedure cost 10K! Hard to imagine how others around the world & even in Australia who may not be able to afford medical assistance, pay for medical treatment out of their own pocket.

Through our journey I have met a beautiful young family in this very situation. Their mother is on a full study scholarship. They have paid private medical insurance. Unfortunately, it doesn’t cover all of the expenses. Approximately 30-40%. Oncology care when you break it down can run into $500K or more. No medicare card = no coverage. Similarly, some rarer cancers are NOT covered under Medicare, so families need to foot the bill.

Bella is doing so much better as we progress through our journey. Discharge will occur in less than 1 week! We are beyond excited. The past few weeks are becoming arduous though. Bella’s overall health is improving, so there is less to worry about which means the days are long! Thank you to my beautiful siblings Elaine, Huong & the RCH therapy team who help to keep Bella preoccupied during the day whilst I prepare our home in anticipation of Bella’s home-coming!! It will be momentous for our Bella & our family. Time to go home!!!

Her counts do fluctuate daily, but nothing for me to be concerned about. Some medications Bella takes can suppress her marrow. Good news is, Bella’s bloods indicate her marrow is healthy & is producing all of the important cells needed by an individual. No blood products since she engrafted! Woot! Woot!

A bone marrow transplant to me is like building an entire FACTORY from ground up. The all important STEM CELLS are transfused into the patient. They need to work really hard to engraft & connect with a patient’s body, the building blocks or “machinery” to get the production line running. I cannot begin to imagine the complexity at that cellular level (genetics, GvHD etc). Every now & then, the medical team can help this bone marrow factory by giving GCSF to help in the production of healthy cells to ensure we DON’T lose the ENGRAFTMENT. This can happen! Hence we will stay until next Wed (so Bella can have 1 more f ose of GCSF).

Team Bella have endured much during the past 7 months & counting. But we have also accomplished much. Through Bella’s cancer journey, we have been able to share our story with you all.  By doing so, we have raised awareness. People have given blood more regularly & some became new blood donors! (http://www.donateblood.com.au)  We have encouraged many others to register on the Australian Bone Marrow Donor Registry (http://www.abmdr.org.au) & have fundraised & completed Bella’s backyard but Team Bella also went further on raise money for several charities. These amazing organizations have supported us throughout our cancer journey including Children’s Cancer Foundation , Challenge, Camp Quality Victoria & the Starlight Children’s Foundation.

Most importantly, we couldn’t have done this without the ENORMOUS help from our tribe. I stand so proud to say that every single person who sent us a prayer, positive energy, folded a crane, purchased Team Bella merchandise, helped even by becoming AWARE. Thank you from the bottom of my family’s heart. We feel so much love & that is what has MOTIVATED us to get through an exceptionally difficult year.

I hope we have climbed the ‘peak’ of our journey, passing through the dangerous crevasses that at times, wanted to swallow us whole. But we persevered & giving up was NEVER an option.

Team Bella: Onwards & upwards.