Relapse Journey

Day 95

Pre B, ALL Standard Relapse

They say “every cloud has a silver lining”. Team Bella certainly breathed this philosophy this week.

It started out as a pretty devastating week, with Bella not opening her eyes at all, due to ARA-C toxicity. The chemo drug has known side affects associated with your eyes. It causes death of the rapidly producing epithelial cells on your cornea & prevents them from regenerating. This in turn, prevents Bella’s eyes from having a protective layer atop. She was in extreme pain each time she opened her eyes (e.g any air that passed over her eyes, caused a severe burning sensation) & photosensitivity (i.e to light). She struggled with using her eyes so she closed them shut. She practically lived like a visually impaired person to cope with the side-effects of the toxic chemo drug.Β πŸ˜”

I called for a opthomologist to review her eyes. Dr Michael arrived Wed night & had a beautiful bedside manner. He was patient with Bella as she was screaming out in pain each time he wanted to lift her eyelid.

He persevered, & slowly she allowed the numbing drops to go in so he could examine her eyes. Following the consultation, he prescribed a different steriod (Maxidex) which would be more effective & potent to help improve her condition. He also prescribed polygel/polyvisc to help relieve the syptoms she was experiencing.

As per previous post, on Tue 20/6 we discovered that both of Bella’s BMT donors had fallen through (one had been an 8/10 & the other 9/10 HLA Match). This left Bella with the 2nd best option to have a Haplo transplant, receiving either one of her parents marrow or stem cells.

Following a comprehensive blood analysis, on Friday morning, RMH gave me a call to inform me that the Children’s Hospital had decided Bella would be receiving my STEM CELLS to go to transplant. I was overwhelmed with emotion upon taking the call. This would hopefully provide her with an option for survival & to beat leukemia.

Mother & daughter have truly come full circle. I hope that the 5/10 match for us can be compensated by the new marrow from mummy. Given to Bella with the deepest love & hope that she survives this re-birth in July (1 month short of her 8th birthday ). It is beautiful to give the gift of life- more so to give a second chance at life to my off-spring ❀. Aint life grand?

The week just kept on getting better. Late Fri morning, after a blood transfusion the day before, & new eye medications administered, Bella slowly opened her eyes!! With symptoms abating & haemoglobin coursing through her viens, with the aid of my beautiful sisterΒ ElaineΒ we got our fully functioning Bella back! Woot!Woot!!

Then this weekend we commenced the Team Bella backyard blitz/working bee. The weather was on our side!!! A balmy 13 degrees celcius brrrr (we could not complain-no rain).

I can’t wait for this dream play space to be completed. Made with so much ❀ to provide a private space for Bella to escape into a magical world where cancer & pain does not exist. Where mummy doesn’t have to make decisions on her behalf. Where she can have uninterrupted play with Chibi/Olivia. Bella will have FULL CONTROL. To reclaim her CHILDHOOD & LIFE back.

Thank you to every single person who has contributed in some way-through the positive love, encouragement, prayers & fundraising to make this happen. Or by giving blood or becoming a bone marrow donor. Our family are deeply grateful. 😍😍😍

Love, light & positive energy to you all!!!

Childhood cancer awareness!Β πŸŽ—πŸŽ—πŸŽ—πŸŽ—πŸŽ—

Team Bella: Never give up! Let’s beat this together!!Β πŸ’ͺπŸ’ͺπŸ’ͺπŸ’ͺπŸ‘πŸ‘πŸ‘πŸ‘

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Relapse Journey

Day 91

Monday afternoon, Alie (nurse coordinator) told me that Rachel (Consultant oncologist) needed to meet with me. The nature of our meeting was not specified, so I assumed it was to discuss the Road Map for the next 2 weeks ahead.

I was not prepared for the BOMBSHELL that was about to hit me during this meeting yesterday afternoon.

Rachel cut straight to the chase, she said, “Vanie, sorry but we cannot use either of the UNRELATED DONOR’S MARROW/STEM CELLS when Bella goes to BMT”. 😱😱😱😱😱😱😱😱

I felt like the four walls of our meeting space had JUST. CAVED. IN.

Rachel quickly explained why, as she registered the devastation on my face. She said, in regards to Bella’s two donors:-

1. Donor A aged 27, had a 8/10 HLA (Human Leukocyte Antigen) match with Bella but he had been exposed to either the Hepatitis B or C 😱😱 virus. ❌

2.Donor B aged 38, pulled out. He expressed the need to withold from running ALL blood tests until 21/7/17 😱 because he was travelling to South America 😱😱😱 whereby exposing himself to the Zika virus. ❌

Well, thank you, but no thank you.

Currently with an MRD = 0.027 Bella is considered to be in remission. We do not have time to WAIT (plus we wouldn’t use his marrow post such a high risk trip). Team Bella needs to go to BMT mid July 17′. Delaying the BMT is not an option as we have used chemo which has reduced the MRD to an appropriate level to take her to transplant.

Alternative option????? HAPLO TRANSPLANT.

Haploidentical Stem Cell Transplant. An allogeneic haemopoietic stem cell (HPC) transplant would involve matching a patient’s tissue type, specifically their human leukocyte antigen (HLA) tissue type, with that of a related or unrelated donor.

In Bella’s case, that would mean her parents (related donor) since Olivia was not a match. We are considered Bella’s 2nd best chance for survival as her marrow is too diseased. 😒

Bella is the result of the combined X & Y chromosome fromΒ FutoshiΒ & I. So generally speaking, we have a 5/10 compatibility. It may be more once we quantify our bloods etc. Rachel assured me with advances in transplantation, the doctors have a good grasp on managing GvHD (Graft vs Host Disease). There will be other short & long term side effects that Bella will need to deal with post transplant, but we’ll desl with those when we need to cross that bridge.

So yesterday, I went downstairs to complete the transplantation & immunogenetics blood screening to see if I would become the donor.

Tosh will carry out the test today.

Bitter sweet really, when you come to think of it. The beautiful human being we created out of ❀ would end up receiving some of our marrow/ stem cells in order to be given a 2nd chance at life. One of her parents would hopefully be her CURE or life-line.

Bella’s re-birth.

HSCT will exclude TBI treatment thank goodness! Rachel is happy about this too!

So following transplant, Bella will have renewed life, new marrow coursing through her body. But it will come from one of US. 😍😍😍

I will keep you posted on who is the most compatible donor to take Bella to transplant.

This week, our little warrior demonstrated such resilience. She has battled with severe conjunctivitis since Sun night due to the toxicity from Ara-C. Bella hasn’t opened her eyes since early Monday morning. So she has developed coping mechanisms in hospital. She is functioning currently like she is a vision impaired person! I guide her to the toilet, she does art & crafts, watches or listens to the television. She adjusts her body, to her situation.

I am so very proud of her. This battle has taken over half her lifetime. We cannot WAIT to reclaim her life back! Bring it!Β πŸ’ͺπŸ’ͺπŸ’ͺπŸ’ͺ

Team Bella: this rollercoaster just gets scarier & is so unpredictable by the day, but we just hold on TIGHTER…to fight another day! We won’t back down because Team Bella never gives up!!!!Β πŸ‘ŠπŸ‘ŠπŸ’ͺπŸ’ͺ

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Relapse Journey

MRD

MRD= 0.027. We will need to do TBI & other therapies to get MRD to =0 or -ve. MRD ⬇, not ideal, but a good result
Team BellaΒ πŸ‘Š

Relapse Journey

Day 88

It’s been a busy 2 weeks for Team Bella. Yesterday, she commenced week 11 Chemo cycle (still part of the clinical trial).

Still no MRD result from the post -induction chemo cycle *fingers crossed for a good result*
If you can recall, her last one for post-induction was not good, given the MRD in reinduction was 0.15 then in post-induction it was 0.467.

Now in relapse consolidation, we are praying the high dose chemo has been effective in killing off the remaining leukemia cells, so that Bella can AVOID further high level treatment to eradicate her body if the mutant lymphoblastic cells!

If her MRD isn’t zero, then Bella will also have to go through Total Body Irradiation (TBI). Wed this week, we had our first visit to the Peter Mac Cancer Centre. We had a TBI planning meeting with the Snr doctor, followed by a full CT scan to map Bella’s body in preparation (should she need to have TBI). TBI will also carry potentially high risk of additional long term side effects for Bella (e.g further damage to her pancreas & development of diabetes Type II 😱). We will deal with those challenges should they occur. Unfortunately, every treatment on this journey it is a double edged sword for oncology patients.πŸ€”πŸ˜±πŸ˜¨πŸ˜’

The TBI will take place over 4 days if her MRD is not zero/negative. The full body radiation therapy will assist in bringing the MRD down further if there is any residual disease still hiding in Bella’s bloods. In addition to this therapy, she will most probably also have a Stem Cell Transplant SCT (whereby they transplant her own cells back into her to counter the side effects of treatment etc. It is undecided at this point whether our consultant oncologist will use targeted therapy-all dependent on the MRD result we are yet to receive from Sydney.

Overall, it’s been such an AMAZING time for us to be able to spend some much needed time at home as an entire FAMILY UNIT. Freedom for Bella from the IV pole, having the freedom to simply be a 7 year old kid. Home life was heavenly.

As a veteran oncology mum I can never get used to the confronting behaviour of a child on steroids & their behaviour whilst on treatment. It is heart-breaking to watch her have steriod “roid rage”. This little human being who is generally so placid & beautiful can become so angry, irrational & exceptionally demanding at times. For example, on the car, we can only listen to classical music, or only something relaxing. No talking. Windows need to be up. Olivia & mummy cannot sing to the tunes.
This is how the impact of treatment has on your behaviour, mental health & relationships. It screws up your REAL world. The normal stuff is no longer normal. You become extremely sensitive towards noise, light & smell.

So eventhough we were home, it was like exhausting. We were walking on egg shells around Bella. Sometimes, it was best to ignore the tantrums because sooner or later she would run out of steam. 😒

She doesn’t mean to be mean. The treatment causes her to be so angry. Quite simply she is OVER it. 2.3 years was bad enough, let alone another 2nd cancer journey! 😫😫😫

Her carers & I try to practice MINDFULNESS behaviour with her. But it doesn’t always work. 😣 When everything becomes too much I need to resort to giving her 1/4 tablet of Lorazapam. It pains me to have to use it it, but sometimes I need to help her sedate her because she can get so wound up! It becomes stressful for everyone!

Personally, RELAPSE has been far more challenging, compared to our diagnosis journey. Mainly due to the response from her body towards the additional high dose chemo. She’s endured a port infection, oedema, pancreatitis & a fatty liver …then the protocol has differed greatly from the standard High Risk ALL treatment. There are more unknowns throughout our 2nd journey.

Team Bella are EXHAUSTED mentally, physically & emotionally.

But we see light at the end of the tunnel. Bring on new marrow = new LIFE for Bella. This will hopefully be a CURE & it’s just around the corner!!

The lead-up to BMT will be intense. Her body will be pushed to it’s limits.😱😱

Team Bella: Not afraid to say we are petrified but excited all at the same time! But the one CONSTANT in our camp is: we will NEVER GIVE UP! NEW LIFE-BRING IT!Β πŸ‘ŠπŸ‘ŠπŸ‘ŠπŸ‘Š

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Relapse Journey

Day 82

Today we are in day oncology as Bella is in the middle of her week 10 chemo cycle. This round involves the administration of dexamethosone (steriod= roid rageΒ πŸ˜‚πŸ˜‚), vincristine, cytarabine, Erwinia (replacement of Peg-aspariginase ) & methotrexate.

We have two of these cycles to complete before body conditioning -readying Bella for BMT. There may be other therapies required, but we we cross that bridge when we get there.πŸ˜‰

Her liver (which the oncs discovered was fatty was most prob caused by a combination of a myriad of cyctotoxic meds she’s had in her young life, but also from the lipids. Lipids ran intravenously when the pancreatitis was discovered. The TPN (total parenteal nutrition ) & lipids ran together during a 3.5 wk period when Bella’s pancreas needed to be rested. She also had zero appetite so the IV nutrition was pertinent to stabilise her weight as she quite easily looses weight during HD treatment.

We had a short stay in RCH for week 10 chemo cycle. Overall, Bella has coped really well physically in this round. She is mostly tired & very grumpy but it’s to be expected considering how long she has weathered this cancer journey.

Last Fri Bella also had a BMA. This result is extremely important for Team Bella as it will determine how much more chemo or whether other therapies are required to bring her MRD (min. residual disease) down to zero or negative. We need it to be zero before entering transplant. We wouldn’t want the new donor’s marow to graft any residual disease! No thank you!Β πŸ€”πŸ˜‰

So the BMA results are sent to Syd for analysis as the machine here cannot provide a detailed enough microscopic analysis ( only a 0.00 result can be obtained).

I am very proud of the way she carried herself. She is reserved (on the quiet side) but always observant & learning about leukemia & all that it entails.

I try to keep our journey honest & open to allow her to have a speaking platform to ask me ANY questions. To help make informed decisions because after all, this is a part of HER LIFE JOURNEY. I am merely the interim-lighthouse -keeper. 😊😊😊😊

I cannot wait for her cast her sail out to sea-to discover life outside of the confines of hospital life.

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

Relapse Journey

Day 77: Counts recovery

We have been at home since Fri 2/6. It has been a blessing. To be re-united as a family. ❀❀❀❀ To enable Bella & Olivia to spend some quality time together before Bella goes into isolation for her bone marrow transplant (BMT) which will occur sometime in Jul/Aug. I wiĺl have a transplant meeting with Rachel in the coming weeks.

However, spending 42 days apart can place a heavy toll on the family unit. Bella due to her on-going med issues (primarily on-going headaches/nausea & abdo pain) is often cranky & moody.

I recall a scene from Frozen, where Anna goes in search for her older sister Elsa to play with her, but Elsa withdraws herself. Unable to interact & love her sister before she discovered her powers & life changed. I cried many tears for them when this scene flashed through my mind…

In the same vien, this journey has changed Bella. It has changed all of us. But the impact it has had both mentally, physically & emotionally on Bella is more heightened in our relapse journey.

Frozen is a movie which resonated with our family because of the relationship b/w 2 sisters, Elsa & Anna. I couldn’t avoid it even if I tried in 2014Β πŸ˜‚πŸ˜‚. Do you want to build a snowman? No thanksΒ πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚Β Let it go anyone?? OMG….my kids still like Frozen! Disney will release Frozen 2 soon too!Β πŸ˜±πŸ˜‚

RCH kids requested it & it was repeated all the time on Starlight! For anyone who has seen the movie, you will understand what I mean.

It’s almost like Bella lives in a “glass bubble”. It’s not intentional on her part or our part. But this journey, it changes you. Bella feels broken at times because she cannot demonstrate the love she once had for her sister. She is emotionally, mentally & physically spent.Β πŸ˜£πŸ˜ΆπŸ˜”

Result? They argue. Bicker. Throw tantrums. ALOT. Can be irrational. Argue about trivial things. The dynamics of their sibbling rivalry is so much more INTENSE in this relapse journey.Β πŸ€”πŸ˜«πŸ˜«πŸ™

Olivia is also exhausted mentally & more so emotionally because she simply does not know how to deal with mum & Bella back in her life. It’s overwhelming for a 6 year old. 😫 So I have to hold her tender little heart & band-aid it. Kiss it better because 42 days away from your mum & your BFF older sister is not an easy feat.

Mummy is exhausted too. So in the past 5 days, I have had to threaten them with a code grey at home! Numerous timesΒ πŸ˜‚πŸ˜‚πŸ˜‚Β Don’t ask me how I would carry that out. I don’t know? It does stop them dead in their tracks when I threaten to call oneΒ πŸ€”πŸ€”πŸ€”

Three years & counting is a long time to deal with a disease. Cancer treatment & everything that it entails is so bloody intense. This is one of those weeks where Team Bella just wants to curl up into a foetal position & wish this insidious disease would go away.😒

But life must go on. This fight must go on. But some days, you just feel like crap. Mary M said to me not long ago, ” It’s ok to sometimes feel this way. It’s quite normal after enduring what you have.”

Yesterday we came in to RCH for a review. Bella’s marrow has held since last Fri. Her neutrophils were 0.7, platelets 49 & haemoglobin Hb 101. But our onc has delayed chemo until Friday to allow her counts to recover further.

Unfortunately, yesterday’s full blood test & liver function test indicated potential liver disease in Bella.

ALT levels were 234 on 2/6 & yesterday it was 721!!! It’s not surprising as we have had to give her so much meds during her treatment, including the cytotoxic ones!Β πŸ˜”

Inflamed or injured liver cells leak higher than normal amounts of certain chemicals, including liver enzymes, into the bloodstream, which can result in elevated liver enzymes on blood tests. The specific elevated liver enzymes most commonly found are: Alanine transaminase (ALT) Aspartate transaminase (AST). (Mayo Clinic).

“If acute liver disease causes elevated liver enzymes, symptoms may include fatigue, nausea, vomiting, upper right quadrant abdominal pain and tenderness, mental changes or itching.” Mayo Clinic

Bella has experienced all of these symptoms. 😒😱 but not severely so her liver can possibly recover? I will need to discuss the action plan with our onc.

We will have an ultra-sound on Thu 8/6 to see what her liver is doing. Oncs will also follow her bloods closely to monitor the behaviour of her liver.

Team Bella: Copping it on the chin. We are somewhat bruised & battered this week but soldiering on.

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

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Relapse Journey

Day 71: Could go home!

Day 71: Pre-B ALL Standard Relapse

Team Bella potentially could go home in the coming days. Yay!

Before we can be discharged (potential discharge date Sun 4/6/17). Bella’s counts need to climb up over the next few days. Goal: neutrophils need to be at least 0.1. Currently neuts =0, Platelets =12, Hb=77, WCC=0.2 Her marrow is still hypocellular/suppressed. Homeward bound requires Bella to be weened entirely off TPN & her nutrition will switch over fully. Currently NGT feeds running @ 20 & TPN rate=25. We need the TPN to be zero. TPN is what is holding us back from discharge. It is too unstable a solution to run from home but everything else can be brought home (anti-medics, pain mgt meds, NGT feeds & constipation meds can all be administered by nurse mummy). πŸ˜‰

Team Bella wrist bands have arrived! We changed the band colour to aqua- Bella’s favourite colour now. PM your address (if you live more than 20km from Derrimut) so I can mail it out to you.

Once you receive them pls take a pic of you wearing them or just the band placed somewhere πŸ˜‰ & tag team Bella please!

Team Bella: Never give up! πŸ’ͺπŸ‘Š

Love, light & hugs to ALL of our beautiful supporters! We can’t thank you enough. 😍😍😍

Advocacy

Challenge needs our help

Dear friends in Melbourne,

Challenge needs our help. Recently they were burgled & all of the X-box consoles they lend to oncology kids whilst in treatment were stolen!! πŸ˜±πŸ˜±πŸ˜”πŸ˜”

They urgently need donations of any old (in working order) X-box consoles/Play Station & games you have but don’t use anymore. C’mon! Let’s donate it to a good cause! πŸ€—

Challenge will use these to provide support & entertainment to the children.

Just call the Challenge office to speak to the lovely Olivia to organise drop off etc.

Challenge : 9329 8474