Relapse Journey

Day 70

Day 70, Pre-B, ALL Standard Relapse

The last 2 weeks have been a counts recovery week for Bella. She is stable & doing well. Bella has the occasional abdominal pain (pancreatitis ) & bouts of nausea -quite normal for immunocompromised children.

We are trying to wean her off the TPN (total parenteal nutrition) as it’s not real food entered via her gut but given intravenously through the lumen connected to her Hickman.

It’s a slow process to ensure her body responds well & copes with re-introduction of pepti-jnr (milk feed) feed via NG so it actually passes through her gut. It’s been empty for 3 weeks due to being on TPN. Balanced fluid loads at capacity =58ml/hr b/w the two feeds. She’s also given hydrolyte to ensure her blood glucose levels are stable coming off the TPN.

Bella stays in her room most of the time but will venture out occassionally. She loves doing her favourite thing: Arts & crafts with her aunties Huong Huong & Elaine.

Her marrow is hypercellular (suppressed) from the recent high dose (HD) chemo. Counts are minimal. Today’s bloods, WWC= 0.2, neutrophils= 0, Hb = 80 & platelets= 14 (before transfusion early this morning).

Next Tuesday she will have a BMA to obtain the MRD. We are hoping it will be (0.1 or negative). At this point, our oncologist has informed me Bella will have another 2 rounds of HD chemo. Depending on MRD result, we may use other therapies but our road map has not been confirmed at this point.

I just wanted my friends to pause, and take a moment to reflect with me. I know it’s difficult to gather a sense of how we as the patient & family cope travelling through this adversity.

I am providing some insight into my family’s take on our journey so far:-

We are ok. Yes. CANCER SUCKS. We do cry (alot I admit) but we also laugh ALOT. We never take the time we spend with Bella for granted.

Yes, she’s missed loads of school work. But who cares? Jack Ma, a self made tech billionaire failed Primary School. Failed High School. Failed uni. Got rejected from Harvard & even KFC! But he persevered. Life is what you make of it.

When Bella comes out from the other side, I know she will carry some physical & mental health scars. Who wouldn’t battling this disease for most of her young life! But the gift of a second chance at life (Chemo, BMT) & the enormity of what she has endured will probably not sink in until she is older. But Bella has learnt ALOT about herself.

She’s not perfect. None of us are. She will have days where she wants to hide from the world. Stay in her inner sanctum = room. Grumpy as hell. Days where she is in so much pain or too lethergic & is bedridden all day.

But we also have some good & some amazing days, like yesterday. Her school participated in Challenge’s “Day in May”. They raised funds to help support the amazing team at Challenge. Everyone at school dressed up as a superhero in honour of Bella & her cancer journey.

I feel so humbled, blessed & so proud that Bella is supported by her community & so many people around us who love & adore her.

So THANK YOU.

That’s my Bella the Brave. She’s not a superhero in the true sense like Batgirl. But my little baby, just soldiers on. She never complains about all of the meds we give her. Nor does she throw tantrums because she yearns to leave the ward.

She even self-advocates (I have taught her well πŸ˜‚).

She has taught me about perseverance. Resilience. Appreciation of quiet time. Connectedness. Togetherness.

As a mother, advocate I have taught her compassion. Gratefulness.

So what’s my point? That although our family has been dealt with adversity, there’s no point fretting over it. We have no regrets. We have learnt so much on this journey about ourselves, awareness & most importantly LOVE.

You seize each day & make it your own.

No matter how many fireballs are thrown in your direction.

You just pick yourself up.

Dust off your clothes.

Start the new day.

Heading into BMT is daunting as it can be wrecked with so much uncertainty & risk (due to graft versus host disease GvHD). But heck, Team Bella: Bring it! πŸ‘ŠπŸ’ͺπŸ‘ŠπŸ’ͺπŸ‘ŠπŸ’ͺ

Right here. Right now. We appreciate the little things in life.

Because when we leave this Earth, you cannot take possessions. But you can leave a footprint. A legacy.

Team Bella: Making the most of our journey. Appreciating humour & the love that surrounds us. Life’s short : Make it your own.

Onc patients can have a pretty dry sense of humour but they do see positives in life, even when there are grey cumulus clouds overhead.

A positive attitude takes you far not only in life, but it endures adversity pretty well too. Hope floats. πŸ˜‰πŸ˜Š

Relapse Journey

Day 60: Day leave

Team Bella: update
Pre-B, ALL Relapse, Post-induction, Day 60:

Bella completed the 2nd intense cycle since relapse on Friday! Woot! Woot!

She is neutropenic but has had a Hb transfusion yesterday, followed by platelet transfusion today. Counts this morning: neutrophils 0, Hb= 93, WCC 0.3 platelets <10. See? I had to request platelet transfusion because no one had followed it up! I need to stay on top of her counts daily to help advocate on her behalf. πŸ˜”

I requested day leave from Kookaburra ward (because I knew that RCH would not discharge her due to her being on the TPN atm).

So we were allowed to take her out for the afternoon (~2.5hr to be exact).

It makes a HUGE difference for a patient. Bella had been stuck on Kookaburra for 27 days. πŸ˜” Long term patients become clinically withdrawn/depressed. As a parent, this is heart-breaking.

I would often encourage her to leave her room. Walk around the ward. Play in the hut. But Bella becomes so withdrawn because the chemo (which makes you feel lethargic & crappy in addition to the pancreatitis ) that she prefers to coup herself up in her room. She also experiences sensitivity to noise & light so her hospital room is her HAVEN.

I don’t want her accept that this journey is normal. I don’t want her to feel like being bedridden is normal. I don’t want her to stop socialising with people because she thinks it’s normal. It isn’t.

So today with some prior organisation, we managed to get a couple hours day leave. It was SUBLIME. To drag her out from the withdrawal & clinical depression that she so easily falls into during intense treatment.

Team Bella: Freedom from the IV pole. Not giving in to this INSIDIOUS DISEASE. πŸ’ͺπŸ’ͺπŸ‘ŠπŸ‘ŠFresh air ❀Williamstown❀ Pelicans Landing ❀

Relapse Journey

Reading = Therapy

Team Bella ❀ Alison Lester for her creative genius, warmth & beautiful soul. Not to mention our LOVE of her books. Many nights spent on Kookaburra reading Noni the pony, Are we there yet? I’m mean I’m Green from the Book Bunker @ RCH ….

We are humbled to have met her in person during her frequent visits to RCH to spend time with the children on the ward. 😍

Team Bella : reading= therapy. ❀​

News – www.alisonlester.com

Sunday October 30th, 2pm onwards.

Source: alisonlester.com/blogs/news

Relapse Journey

Day 57: Another juncture

Medical update infused with some reflections from our day…

Pre-B, ALL standard relapse, Post induction cycle, day 57.

Bella has been feeling pretty miserable/grumpy/flat. Sleeping most of the day ~16 hours each day this week. Platelet transfusion last night after I requested for a review. Bella’s platelets were 18 (pre-transfusion). This week she was given 3 types of chemo, Etop, cyclophosphamide & Erwinia. She experienced mild nephrotoxicity towards Erwinia, extreme lethargy, mild mucositis, coupled with the on-going chronic pancreatitis.

Yesterday morning I met alone with Bella’s gynecologist. This meeting was arranged by RCH due to Bella now sitting in the HIGH RISK category for fertility issues due to relapse & the need for her to go to transplant.

It was a very confronting but extremely important information sharing experience b/w Bella’s gyno & I. She approached our 1st session extremely well, telling me about her background/training & asked me questions about Bella’s medical history & Bella’s recent relapse journey.

Family-centered care = tick.

So we are at this juncture in Bella’s cancer journey. As a mum, carer, advocate my family & I have a week to decide whether we will go to fertility preservation for Bella. Why? Because following the very toxic & often highly risky bone marrow transplant procedure, Bella’s genetic material will change or her reproductive organs may be damaged beyond repair.

Once Bella’s marrow is essentially ‘put to sleep’ & the new, healthy donor marrow is introduced & hopefully starts to work, she effectively will be an organ donor recipient.

To clarify, our bone marrow is like a factory. It is an ORGAN. It is the spongey material which exists within your bones. Marrow produces important cells like red blood cells (to carry oxygen around your body amongst one of its uses), white blood cells (b & t cells etc which fight immunity) & platelets (cells which help to protect your body & help it heal when you bruise). There are many other cells produced in your marrow, but I am not trying to write a textbook here. πŸ˜‚πŸ˜‚πŸ˜‚ I just want to help others understand childhood cancer & the challenges Team Bella faces on our journey.

In Bella’s case, 1 immature B cell (white cell) mutates & it is immature. This white B cell has not developed into a mature cell in your marrow to lend it’s hand in Bella’s immunity. This immature cell starts to aggresively duplicate itself, crowding out Bella’s bone marrow, thus preventing her from creating healthy marrow. Cancerous. Essentially, without chemo ( which is cytotoxic & kills all white cells) she would die.

The 2.3yr of chemo was meant to stop the leukemia from returning. Unfortunately, due to Bella’s complex cytogenetics (deletion of p16 Ikaros gene this is a tumour suppressor gene we all have) but in Bella’s case, it has been deleted during the genetic mutation. Hence her chance of relapse was high & unfortunately she relapsed 9 mths post/end of treatment.

A transplant would hopefully, be a cure for her as it is introducing foreign, healthy marrow into her marrow, thus giving her a second chance of survival. Chemo obviously did not work.

Now, back to the gyno appointment. So, we have 3 choices in Bella’s future chances of growing into an adult & making the decision to become a mum (which most women one day may/may not aspire) to do.

We as a family, will make an informed choice on what would be the BEST life choice for Bella (who is a human being in her own right, but is also a minor-who doesn’t understand the enormity & complexity of her treatment) given her current circumstances.

In Bella’s case, the options are:
1. Do nothing : allow her to develop naturally post treatment & she has a 20% chance of conceiving naturally with her own fertilized egg one day.

2. Ovary tissue preservation: we have the option to store Bella’s ovary tissue . The obstetrician will perform a laproscopy to surgically remove 1/3 of Bella’s ovary tissue to preserve it. This preservation is offered free at Melbourne IVF atm. They extract tissue from Bella, not her dormant eggs being ‘pre-pubesesant’. Her eggs have not developed yet & technology is not currently available to stimulate immature eggs to become healthy eggs which can be used for fertility. This also gives her 20% chance of fertility.

3. IVF (obtaining a donor egg preferably from her sister Olivia or unrelated donor if needed) or adoption.

Bella’s reproductive organs should still allow her to carry a baby to full term (even with the cancer treatment she has received so far). πŸ˜‰πŸ˜

Where is my mind sitting at with this decision??? Million dollar question.

I am steering towards doing NOTHING. Why? Because currently, Bella’s main priority is surviving her next big challenge: BMT.

Fertility preservation will involve another medical procedure/surgery. It will carry the risk of medical complications for Bella. Bella also has the issue of dealing with chronic pancreatititis pain which can ‘flare up’ following this procedure. This would be dire for Bella going into transplant, as complications arising from the fertility preservation process could set her back & jeopardize her road to transplant.

In addition, knowing that she has already had 2.3yrs of cyctotoxic chemo coursed through her body in addition to her individually bad, cytogenetics, do we really want her to genetically create another human being who has a high chance of carrying the defective gene(s)?????

Bella has been through so much. As her parent, advocate I truly just want what is best for her-ethics considered.

Food for thought.πŸ€”πŸ€”πŸ€”πŸ€”πŸ€”πŸ€”πŸ€”πŸ€”πŸ€”πŸ€”πŸ€”

So last night we were invited to Challenge’s parent dinner. This wonderful org puts on a delicious 2 course meal to help make our cancer journey easier.

They organise volunteers to come sit & play with the children so parents can relax & enjoy one another’s company.

We all did, just that. Thank you Challenge. πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘

This allowed Bella & Olivia to spend time together. Bond.

At the end of the night when it was time for Olivia to leave, she quickly darted for the bathroom (to delay the goodbye process with mummy). Thankfully FutoshiΒ pappy grabbed her arm & gently told her it was time to go home with Ma 3 Sarina.

I kissed & hugged her. She asked again, “Why do you say next week you will come home? Why not this week? ”

To which I replied, “Olivia perhaps when you grow up, you can be a scientist who can safely & effectively CLONE mummy. So that I can be in 2 places at the same time???”

This was her response: “Well, I only want the REAL you. Bella can have have your clone!!!” πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚

Team Bella: Practising Mindfulness. Dealing with our 2nd cancer journey HEAD ON. Taking HUMOUR along for a ride. Learning each day as we walk this path. Sharing our journey to raise AWARENESS. Building resilience. Never give up!!!

Relapse Journey

Side effects

I remember taking this picture 7 years ago of Bella. We were on our way to the Box Hill Town Hall to attend the Japan Festival where my father-in-law works tirelessly, volunteering each year to put on a cultural extravaganza.

We stopped by at a small park to let Bella have a play on the swing. β€πŸ’šπŸ’™

My hope is for her to one day be able to do this with her own children.

Today we have a gynecology appointment. Mixed feelings going in as I know years of toxic chemotherapy can have a detrimental affect on fertility & then her genetic material will change post transplant….

You don’t want to know what is going through my mind at the moment. πŸ˜£πŸ˜”πŸ˜±πŸ˜¨πŸ˜ŸπŸ˜žπŸ˜¦

Team Bella: Half cup full attitude. Perhaps surrogacy. Adoption. Things an oncology mum needs to think about simply because we are forced to.

RAISING AWARENESS :LIFTING THE LID ON CHILDHOOD CANCER.

Long & short term side effects….πŸ˜£πŸ€”πŸ˜”

Relapse Journey

Art = Therapy

Bella is making this right now. Beautiful, easy crafty activity for our kids. Imagination Tree is my favourite crafty site. It has provided our family with soooo many inspiring things to do for the past 7 years. Especially in the past 4yr since Bella’s diagnosis. Art=therapy. πŸ˜‰

Four Seasons Tree Craft With Template – Easy Peasy and Fun

We have a wonderful four seasons tree craft template to share with you, this one can fold nicely into a 4 seasons book or you can assemble it together to stand on it’s own. Print our template, there are more versions, and have the kids get creative with their seasons. *this post contains affiliate links* …

Source: www.easypeasyandfun.com/four-seasons-tree-craft/

Relapse Journey

Feeling refreshed

Why I ❀ Melbourne

Melbourne, ce’st magnifique in Autumn
Enchanting shades of foliage line the streetscape
Life splashed about in all its glory
Beautiful hues of orange , red, yellow & gold
Outside, the air is crisp & fresh
Under a mermerising light blue, sunlit sky
Run, jog, drive, ride or walk into
Nothing but endless beauty
Everlasting as the sun rises and darkness falls

Relapse Journey

Day 53: Reflecting on Mother’s Day

Pre-B, ALL Relapse day 53.

A reflective mother’s day piece:

My family rallied together yesterday to give me an awesome Mother’s day luncheon in our current home, RCH. It did make me feel grateful for the love & support I have. I do feel so blessed. β€πŸ’šπŸ’™

But it didn’t alleviate the inevitable pain for Olivia & I as we both knew that all good things must come to an end. She knew it & so did I. 😒

So by 4pm yesterday afternoon when “THAT MOMENT” arrived, my Olivia became so distressed. She begged Aunty 4 not to take her home yet. I tried to console her, so I suggested going to the playground downstairs (to buy us some πŸ’” time.

I had walked with her to the green lifts, Olivia crying uncontrollably into my hip. I held her tight, telling her “Tomorrow will come in no time. You will go to bed, then be up, ready to visit mum & onechan again”. That didn’t cut it. She wanted her mum.

I have only had 4 nights home since our relapse journey begun. This doesn’t get any easier.

In the lift she stood next to me-afraid aunty 4 would grab her to go home. 😒 She said quietly to me between sobs as we travelled down the lift, ” But I want you to come home with me! Today is Saturday, tomorrow Sunday. Then Monday will come & I won’t be able to see you until Friday”.

My heart already broken & bleeding from watching my beautiful Sakura/Bella go through her 2nd journey-enduring so much pain -just collapsed onto the floor of the lift. How does one scrape the Hb, platelets, white cells, blast cells from the floor? We breath counts. Any parent travelling this journey will know exactly what I mean. 😒

It took all my will power not to burst into tears-I needed to stay strong for her. But honestly, deep inside I had curled into a foetal position. Hurting for her. For us.

We both ran onto the playground. Olivia said, “Mummy, I want us to play for 500 minutes”. I told her 10 mins darling, ma tu 4, is waiting. ”

So we played on the see-saw, snake balance beam & climbing frame.

Then my mobile rang. Aunty 4 said, “Look Vanie. Just let her stay. Make sure she has a nap b4 Ma 3 picks her up @ 7pm to go home. ”

I knew my sister who often has to play bad cop so that we can actually manage the “tricky situations surrounding behaviour etc for Olivia, had to break down her walls today. She could see in plain light how difficult it was for Olivia & I to part.

This was our hearts breaking. Yes in all its glory. F*** you cancer. πŸ˜¨πŸ˜¬πŸ˜ πŸ˜‘πŸ˜ˆπŸ‘ΉπŸ‘Ώ

We might be separated & broken by circumstance, but not through choice. You will not break our life bond! ❀❀

Olivia & I spent the afternoon snuggled up on my green couch. I slept for an hour whilst she watched Peppa Pig. She kissed & held my hand, just so thankful for this opportunity & extra time to spend one-on-one time with mumma.

Then it was time to go. She cried & screamed all the pain & trauma the past 52 days stood for, in her little wounded heart.

It wasn’t fair. So in true Olivia style, she locked herself in Bella’s bathroom.πŸ˜‚πŸ˜‚πŸ˜‚

I begged her to open the door. She said, “Not unless you come home with me!”.

“I can’t darling”. Tonight Bella had Erwinia (chemo drug) known to cause nephrotoxicity to Bella. Tonight was her 3rd of 6 doses.

Hospital life hack: I told my sister I knew how to unlock the door. I asked for a 5 cent piece. I turned the lock. It opened.

Her face-registered shock & surprise! She didn’t think I could open the door!

I calmly said to her, ” You can’t sleep in here all night & Bella needs to go to the toilet too”.. I think she would have slept in there, being the determined little being she is. πŸ˜‚πŸ˜‚πŸ˜‚

I picked her up & she screamed louder. I told her I would walk downstairs with her.

So we walked hand in hand, out the Kookaburra corridor. Olivia crying for BOTH of us. We were deeply saddened because we had no control over our hearts desire-to want & need eachother like the air one breaths. We missed one another so deeply.

We took the lift & walked down to the revolving front door entrance of RCH. There, ma 3 & my mum had to grab her gently to coerce her to their waiting car.

This is our journey. My hope is that whatever hardship Olivia endures now, it will make her one resilient adult. I don’t won’t her to become bitter from resenting this journey. Of always being placed in the back seat. I hope she knows that I place both her & Bella on the same exact starting line in my heart. How they choose to live their life -I will love & cherish them no matter what.

I am already so proud of the little human beings they have already become.

HAPPY MOTHER’S DAY! ❀❀❀❀

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

Relapse Journey

Happy Mother’s Day

I ❀ motherhood.

Happy Mother’s Day weekend to all of the mums, grandma’s, aunties out there who collectively, help make our children unique & beautiful.

Thank you for all of the unconditional love you give to the chibi’s. We feel truly blessed.😍

Relapse Journey

Day 48

Team Bella: Medical update
Day 48, ALL pre-B, Standard Relapse

Post induction cycle:
Bella has had another big start to the week. Mon 8/5/17 she went into theatre to have her Hickman surgically inserted. Three lumen put at chest sight. We have never had a Hickman-only a single port. Transplant will be intense with far more toxic medicines & therapies used so she needed the “Ferrari” version of a central line.πŸ˜‚

So thankful the surgeons could put the 3 lumen (central) line instead of just 2. The HICKMAN is a central line access her central vein instead of tempoary peripherals on her arm & legs which can easily ’tissue’ smaller veins & cause all sorts of complications for oncology patients as you can see from Bella’s medical history.

New NG tube inserted in theatre as previous one had blocked (due to feeds going in @10ml/hr) to not exacerbate pancreatititis.

She also had a LP intrathecal Methotrexate (MXT) & IV MXT over a 36hr infusion through her lumen coupled with potassium & glucose hydration to FLUSH out this cyctotoxic chemo entering her body this week.

I need to be aware of possible side effects (MXT toxicity, mucositis etc). Instead of using Peg-aspariginase, they are using Erwinia due to her pancreatititis. Erwinia will be given in 6 doses, from Tue night & every 2nd day until dose is completed.

Yesterday did not come without medical issues Bella reacted to – lips puffing up, mottling all over her legs/arm, nausea ( she did 2 large vomits), -which they charted good ol’ zyrtec resolved (antihistamine). Bella also had continued severe abdo pain, sore eyes (from the chemo leaching out, which they will give her eye drops to ease discomfort today).

Doctors have also truncated her IV bactrim (due to advetse affects on her pancreas) instead using Ceftazidime as the antibacterial.

Everyone is now mindful of Bella’s low tolerance to many medical issues including fluid overload. So nurse in charge came to discuss this with me .

Docs are now more on top of things-thankfully! Checking fluid load, nephrotoxicity of the chemo drugs, albumin levels, enzyme levels (amylase & lipase- pancreatic enzymes) to ensure her pancreas is not inflamed further. The pancreatitis is causing her much distress as abdo pain had been chronic, acute & severe.😣😫😱😩

TPN (total parenteral nutrition) & lipids commenced tonight as we need to increase Bella’s weight. It is given through IV to allow Bella’s pancreas to rest. It is critical leading into BMT. Higher mortality rate for kids who are under or or overweight. A good weight provides a patient’s body with the best physical chance to deal with transplant.

Team Bella: Doing it tough. What doesn’t kill us only makes us stronger. Never give up!
β€πŸ’šπŸ’™β€πŸ’šπŸ’™β€πŸ’šπŸ’™