Relapse Journey

Pre-B, ALL Relapse, Post BMT #2, Day 119

Yesterday, we attended RCH for a review in day oncology to obtain Day +100 MRD (Min residual disease) & Chimerism results for Bella done in theatre about 2.5wks ago. Di was very pleased with Bella’s physical recovery. On continuous nasogastric feeds, we had managed to reach our goal of 18kg projected healthy weight set by the dieticians for Bella.

However, when I went on to ask for the MRD results Di’s expression darkened slightly & she told me calmly, “Vanie, I am sorry to be the bearer of bad news, but we have detected a positive MRD from day +96 BMA tissue that was taken. Leukemia cells were present at the molecular level (10 to the negative 4).” 

I felt like I had just been hit with the 3rd freight train. It took about a minute for me to scrape my heart off the floor. I thought after all that Bella had endured, we were finally getting on with our lives. Apparently not. As I have said so many times before, once you are on this cancer train, you are given a life-long ticket that has no expiry date.

I. Did. Not. See. That. Coming. Following a flood of tears & me profusely apologising to Di for completely LOSING it at our consult after this development, I tried to compose myself. She was so supportive & patient.

My mind started to race. I had a million questions to ask our doctor. Where to now? Do we actually have options? CAR-T cell therapy? Will Bella fit the criteria??

This MRD results were retrieved ~1.5wks prior to Bella ceasing Cyclosporin (immunosuppressive drug). Without this immunosuppression, Di hopes Futoshi’s marrow will go to work & obliterate the new cancerous cells. Di also informed me there WERE options available for Bella.

Thank goodness! If the results of the MRD are positive, the first plan of attack would be to access stored Donor Lymphocyte Cells (DLC).

Every human being naturally has cancer cells in our body. For the majority, our internal defense (immune system) can attack the foreign cells.

Prior to transplant, Bella’s diseased marrow could not combat the leukemic B cells. This was due to Bella’s cytogenetics (i.e deletion p16 (tumour suppressive gene). However, we are hoping & praying that Tosh’s healthy marrow will do just this, because it is not diseased!

So, in 2 weeks, Team Bella will go back in for another BMA to obtain an MRD result. If the MRD result is negative, this will demonstrate that the healthy marrow is doing its job to kill the erroneous immature B cells.

Right now we wait with baited breath until the molecular results come through following the BMA on 30/1/18.

The good news is Bella’s chimerism is still >99% donor marrow. The engraftment has remained strong despite this latest development.

Thank you for your support, prayers & love.

Team Bella: Never give up!

“A Hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” Christopher Reeve.

Relapse Journey

BMT #2, Day +96 – bringing 2017 to a close

Team Bella Update:
Pre-B, ALL (High risk), Relapse, Hemopioetic Stem Cell Transplant BMT #2, Day +96.

Happy New Year 2018!

Yesterday, Bella went to theatre for the important day +100 BMA (bone marrow aspirate ) & LP (lumbar puncture) to obtain her CHIMERISM. The test for chimerism after a hematopoietic stem cell transplant involves identifying the genetic profiles of the recipient and of the donor and then evaluating the extent of mixture in the recipient’s blood, bone marrow, or other tissue. The previous two chimerism results at day +30 & day +60 results were exactly what we needed. Bella had engrafted her dad’s healthy stem cells to produce healthy bone marrow >99% donor marrow. So basically, she currently possesses new healthy bone marrow.

Previously, in the 2.3 years in which she was given chemo, it reduced her residual disease (leukemia) to zero. But once she stopped taking the chemotherapy drugs, the cancer cells came back as essentially, she still possessed her diseased bone marrow.

The day +100 results will be available in ~2 weeks, but all blood results from the past 2 months indicates that Bella has successfully engrafted.

Day 100 is important in our journey as it’s like a certain end point for BMT. If the patient has not developed any major issues related to GvHD (graft versus host disease ) or any other organ failure / complications (as a result of the transplant ) then Bella’s oncology team move towards reducing her therapy.

They will consider weaning her off the nasogastric feeds once she reaches a good weight. We are currently 17.2kg. She needs to be at least 18kg for the dieticians to declare her nutritionally healthy. Removing her permacath etc. Appointments have already gone to once weekly!

Bella with her Day +100 Smash Cake.
Bella with her Day +100 Smash Cake.

Bella has been on cyclosporin since cell day 0. Cyclosporine is used to prevent organ rejection in people who have received a bone marrow, liver, kidney, or heart transplant. It is usually taken along with other medications to allow your new organ to function normally. Cyclosporine belongs to a class of drugs known as immunosuppressants. Bella’s dosage is very low at the moment & Dr François/Dr has advised us she would be weaning bella off the cyclosporin over the next month! This means that the oncology team are confident that her body will be able to maintain the graft without the drugs.

As 2017 draws to a close Team Bella is exactly where we hoped we would be. Our journey will never be entirely over as Bella will live with medical reviews for her entire life. But that’s only a small sacrifice to make in the scheme of things.

However, we are forever grateful & thankful each day for the amazing team at RCH & to our beautiful Team Bella supporters (our family, friends & the wider community in Australia & overseas). We could not have done this without you. We love you all.

Team Bella: Day +100 we made it. Albeit some tortuous mental mountains we climbed along the way, but we never gave up!

Relapse Journey

Pre-B, ALL Standard Relapse Day +82.

Team Bella update:
Pre-B, ALL Standard Relapse Day +82.

On Thursday we attended a review at RCH. Dr Dave was really pleased with Bella’s progress. Currently no signs of GvHD, her weight had increased to 16.7kg & her liver function had improved after discontinued use of Voriconozole & Panadol. ALT down to 277, originally over +1000. Each day, Bella’s stamina improves & right now we’re just trying to help her put back on some weight through the nasogastric feeds! They run pretty much 24/7. She experiences nausea daily, so keeping down her medications & Peptamin Jnr feed can be quite challenging.

Dave also shared some other good news to inform us that after Christmas, we’ll move to weekly appointments instead of bi-weekly. Bella’s bloods are really good & her neutrophils are currently 2.10. Haemoglobin + platelets are also going strong.

As we near 2018, it allows me as a mum, carer & advocate to reflect on our 2017 journey. Relapse is so different compared to diagnosis. Both are equally traumatic, but in relapse it’s scarier because there are less options as we may have exhausted all treatment options.  But after each conversation we had with Bella’s oncology team, we kept it simple.

Giant Chess, anyone?
Giant Chess, anyone?

NEVER GIVE UP!

Surrounding ourselves in the positive energy, prayers & LOVE from our Team Bella supporters was invaluable. You know who you all are, so thank you deeply.

We are away for the weekend in the Yarra Valley to immerse ourselves in nature. It’s part of our de-tox regimen & sharing togetherness after our ordeal of 2017. We are so grateful for what we have.

Team Bella : Never give up!

Relapse Journey

Making Happy New Memories: Post BMT #2, Day +74.

Team Bella Update:

Pre-B, ALL (high risk), Standard Relapse, Post BMT #2, Day +74.

It’s hard to imagine the joy one feels at reclaiming your life. Childhood cancer had robbed our family of everything we viewed as normality. But we’re bringing it back.

A fortnight ago Bella went in to theatre for her day +60 Chimerism & LP procedures. We are so pleased to share the good news with you all that the engraftment is still going strong & the chimerism result was 99.3%. Woot! Woot! So essentially Bella’s marrow is all papa Futoshi’s healthy both marrow.

Bella has not required any blood products either to date, since the transplant! The only concern we are dealing with is her liver function. So Dr François has stopped Voriconozole (antifungal) medication which can impair a patient’s liver function. Hence we’ve replaced the antifungal with with Fluconozole.

Other good news includes the end of Insulin Induced Diabetes! Bella’s pancreas is coping well & recovered enough to regulate her blood sugar levels independently. No more injections or finger pricks!! Whoohoo!

With her health slowly improving each day, we’ve been able to reduce her medications upon the doctor’s advice. Only 4-6 meds required at any one time.

We are just enjoying home life & simply being in one another’s company. It’s not always smooth sailing, but that’s to be expected after our family was forced to separate due to Bella’s treatment. It’s been challenging for our little pocket rocket Olivia. Hopefully over time, the dust should settle.

Thank you to everyone who has Bella in their thoughts & prayers. We are eternally grateful.

Team Bella: Making new happy memories.

Anglesea
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.

Relapse Journey

Day +29, BMT #2. Day 216 since relapse.

 

Team Bella Update:
Day +29 Post BMT #2 (Standard relapse), Pre B , ALL High Risk, Day 216 since Relapse.

Yesterday, RCH launched the Song Book. Bella along with other patients collaborated in creating this book♪♫. The Education Institute is State funded, in-house educational system. We are grateful to have access to this learning especially, when your child is admitted for an extended stay (week 13 this week for Bella).😱

Daily, Bella’s teacher will come into our room for 1hr to engage her in learning. As you can appreciate, incorporating school work within a clinical environment when patients often don’t feel great, can be very challenging at the best of times.😩 But our kids amaze us, with their resilience and they soldier on to work with their teachers through their gruelling treatment. Even if it’s just for 1hr. 😊

We feel honoured that Bella has contributed to several books printed via RCH over the duration of her hospital stays. Inpatient life is arduous, but it can also be rewarding too! Experiences like this will provide Bella with a lifetime of memorable moments which don’t neccessarily have to be negative, but rather uplifting/ inspiring!

Tomorrow Bella will go under GA in theatre. It will involve a BMA & surgeons will take tissue to obtain her chimerism (engraftment) results. Team Bella are nervous & excited in anticipation of our results which will take 1-2 weeks..in the meantime, her counts are all holding except for a slight drop in neutrophils which is perfectly normal.

“Reach for the stars & make your own constellation my darling Bella. There is an infinite number out there, so don’t just settle.. Sometimes the stars that glow the brightest are furthest away. They’re the ones you want.”
(Partly borrowed from Pharell Williams)

Team Bella : Don’t do easy. Where’s the fun in that? Never give up! 🎗