Relapse Journey

Day +13

Team Bella: Update
Pre-B, ALL Relapse, BMT Day +13

I hope everyone is well! Bella had a lovely birthday over the wkend (but it wasn’t the same without Olivia by her side 😒). That night she asked me to let her watch videos of Olivia on See-Saw an online teaching app which loads their in-class learning so that parents can interact & observe. Poor thing they miss eachother so much! 😒

The back yard is progressing well. Astro turf laid down today. It looks AMAZING! Plants are going in this weekend. Saturday we will also paint the kids’ room. Thank you so much to EVERYONE who supported our Fundraiser! Everything is coming together! 😍

Just to clarify, Bella is officially my “hybrid” child. Once she engrafts my stem cells @ least 90% engraftment at around day +30, she will have mix-chimerism. The word ‘Chimeric’ is derived from Greek mythology (head of lion, body of goat, tail of serpent ). That is to say, Bella is now genetically mixed.

Bella’s peripheral (i.e bloods) will contain the majority of my stem cells (min 90%) but also traces of her own marrow. If she did a blood test, both her & my blood cells will come up in the blood test, DNA wise.

Essentially, her centralised DNA will still be her own. For e.g if we took a saliva test/swab, the DNA would be hers.

So, in a criminal investigation, you would have to perform both types of exams to rule out who was actually at the scene of the crime-her or me! Let’s hope she stays on the right side of the law! πŸ˜‚πŸ˜‚πŸ˜‚ Otherwise I could be incriminated!

Is that cool or what? It blows my mind. πŸ€”πŸ˜±πŸ˜±

If she ticks all medical requirements we are looking at discharge date around day +30 or during/after that week. It’s only 2-3 wks away! Today we are sort of half way there, day +13 post BMT.

She is in good spirits. Struggling to control nausea at the moment. Last night & most of yesterday, she vomited. But I am hopeful with a Hb/platelet transfusion today & tomorrow, it should subdue her nausea & give her much more energy. She is also experiencing abdo pain & headaches but overall, she is traveling as well as can be. We didn’t /haven’t experienced mucositis or any signs of VOD or GvHD so fingers crossed that we will just by-pass these symptoms!

Her little body is working it’s butt off engrafting, but she is a little fighter! So we hope for a full recovery & cure soon!

Team Bella: So close to the finish line!

Relapse Journey

Day +6

Written 9th August 2017:

Team Bella: Update

Day +6 , BMT, Pre-B ALL Standard Relapse

Bella’s mood & stamina improved slightly following a double transfusion of both Hb (haemoglobin ) & platelets. Both will help her body to heal & recover. 😊 Her nausea has decreased & she feels more energetic.

Thank you to my beautiful twinsters Huong & Elaine who have been taking care of Bella whilst I run errands & get some reprieve during the day.

This journey, in my experience is unceasingly INTENSE.

Perhaps that’s the reason why I expressed how I am constantly exhausted mentally, physically & emotionally. All onc parents & carers would probably agree with me.😫

None of what we go through is a CHOICE. But how you CHOOSE to handle your journey can make a huge difference to your family, & inevitably, your overall health & well-being. This is a small window into how we choose to handle ours…

Yesterday, I was able to plan time to drive back to my mum’s to spend much needed special time, with Olivia. It had been 3 whole days since I last saw her (Sat).

She was at school so I planned to meet her at mum’s. My mum greeted me at the door & told me immediately, “You should go check your bed. Olivia’s been creative.”πŸ€”

So I ran upstairs & checked our bed. I lifted the doona covers & there lay a “dummy” me. Yes, my Olivia had made a doll of me in human-sized form because she missed me. She missed me just as much as I had missed her. 😒😭

She took the flannel pajamas I had slept in, from last Wed when I came home to rest/recover (1 night) following my stem cell harvesting. She told me she didn’t want daddy to wash them because it wouldn’t smell like me. 😣

I was very impressed with her creativity. She was on the right pathway at 6yr old if she intended to do Sci @ uni… She had already informed me a month into Bella’s relapse journey thst she wanted to become a scientist. I asked her why?? She responded with, “I would be CLONING you mum.”

She later quipped, “I will be keeping the real mummy, Bella can have the clone.” πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚

Siblings are often required to stand by the curb. Waiting until they can hop back onto the family band wagon after one wheel has fallen off. 😯 It is exceptionally disruptive to their little lives (no matter how old they are). So we must as parents, carers continue to nurture their tender little hearts & minds. For our family, Olivia has made huge sacrifices in her very short 6 years. During this period alone, in relapse she has only had me home ~30 days to sleep & today is day 140 since relapse date (23/3/17).

But I am so proud of how she has tried to cope during this journey. I also know that our little Olivia has become more resilient, creative & grateful because of our cancer journey. She just cannot wait until Bella recovers so that she can have the real me back next to her. 😘😁

Thank you everyone who continues to have Bella in your thoughts & prayers. Thank you to all the Red Cross Blood Donors too!!! πŸ‘πŸ‘πŸ‘πŸ‘β€β€β€β€β€β€β€β€β€

Team Bella : Casualties of cancer- siblings. Doing it tough, but we are built tougher! 😊πŸ’ͺπŸ’ͺπŸ‘πŸ‘ πŸŽ—πŸŽ—πŸŽ—πŸŽ—πŸŽ—πŸŽ—πŸŽ—

Relapse Journey

Day +4

Team Bella: Update
Day +4, BMT, Pre-B ALL Relapse

Written 8th August 2017:

Bella ‘s physical health has been fairly stable post infusion of stem cells. We haven’t experienced GvHD & VOD or others infections yet, as it is still very early into engraftment. Some current issues we are dealing with includes severe nausea. She is vomiting around 8-10 times within a 24-hour period. It’s exhausting as she has nothing to throw up except bile & other gastric juices. She also has on-going headaches & abdominal pain.

Bella is currently on TPN 40% & NG (nasogastric/trophic feeds) which we reduced to a 2ml/hr trickle, to maintain gut function.

She is on her usual prophylactic meds, analgesia, anti-medics in addition to immunosuppressent medication(cyclosporin & mycophenolate).

Bella still has an appetite, but when she eats, it often doesn’t stay down due to the copious amounts of medicines she is on.Β Tonight she asked for udon noodles & stewed peaches. She threw both up. Then later tonight, she was still hungry and asked for cheese, smoked salmon dip & milk tea. She’s managed to keep these down so far!

Mental health wise, she has become slightly withdrawn. Wearing her hospital in-patient suit on.Β Due to the location, our room does not receive any sunlight at all (it is situated in the corner/end of the building’s corridor). This is quite depressing when Bella cannot leave her room! Bella ends up staying on her bed most of the day.

Thank you for having Bella in your thoughts & prayers.

Team Bella: Never give up!

Relapse Journey

Day Zero: Bone Marrow Transplant

Written 3rd August, 2017:

Team Bella Update Thu 3/8/17: Day 0=infusion/BMT date, Pre-B, ALL, Standard Relapse, Transplant Rm 201

Today felt like an exceptionally long day. We waited ….& waited until finally, the stem cells harvested from me (the previous day) arrived from RMH into transplant at 6.15pm. The BMT unit at RMH needed to wash the cells by removing some of the T-cells which cause GVHD (graft versus host disease) before infusing them into Bella. We need some GVHD because it apparently has an anti-leukemic affect. In addition, if there is too much GVHD, her body will reject my donor cells & engraftment will not be successful.

Bella is happily doing her drawing whilst our nurse watches over her during infusion of the stem cells. You can see the “HAPPY RE-BIRTHDAY” sign in the background, representing what the BMT means

Infusion took 1hr. The process is exactly like a blood/platelet infusion. Bella does not require any form of SURGERY to have a bone marrow transplant. The donor’s stem cells are simply infused into Bella’s bloodstream & that will eventually result in engraftment. πŸ˜‰

Stem cells are a light reddish colour. It looked like water melon juice (funnily enough, that’s Bella’s favourite smoothie!)

The infusion of stem cells into Bella’s blood stream went well. She did not have a reaction. We are the same blood group B+.

However, by 9pm, her temperature rose steadily. By 2am (last night) she had been febrile for a couple hours when I awoke to her screaming.

She said, “Mummy, my leg & tummy hurts!”

She thew up all night, remained febrile all night with mainly regionalised leg pain all the way down her right leg, abdominal pain & a terrible headache to boot.😦

I called for a doctor to review her. I asked if this was normal reaction/response following infusion overnight, she said yes. But each patient is different.

My stem cells were migrating to her long bones (so they are doing the right thing!) They are very mobile I am told! So these side-effects are simply the norm.

Today we will have both platelets & Hb transfusions so a BIG shout-out to ALL of the blood donors out there! Thank you! ❀ πŸ’› ❀ πŸ’› ❀ πŸ’›

The freight train hasn’t hit just yet. I am bracing for that. But I also know that we will be somewhat prepared, to fight another day. πŸ’ͺπŸ’ͺ

Thank you for having Bella in your thoughts & prayers. 😍😍😍

Team Bella : Never give up! πŸ‘Š πŸ’ͺ

Relapse Journey

Day -2

Written 2nd August 2017

Team Bella: Update (post from yesterday 2/8/17 following my stem cell donation) I was so tired I fell asleep at 8pm). 😊

Day -2, Bella Rest Day (rest days 1-2 Aug) Mummy (Donor) Harvest Day, Transplant Ward, Pre-B ALL Standard Relapse

2/8/17 Stem Cell donation day for mummy. Yay! I was required to take G-CSF over 4 days (2 injections/day) to stimulate stem cell production in my bone marrow.

Some of the side effects (only temporary ) included migraines, nausea, tiredness, back pain & loss of appetite. But this doesn’t happen to all donors. I am just sharing my personal experience. Was it worth it?

YES.

Would I do it all over again if the Bone marrow donor registry contacted me as an UNRELATED DONOR?

Hell yeah! 😍❀

WHY? Because you give another human being the GIFT of LIFE. A second chance. How awesome does that feel & you don’t even need to be a SUPER HERO with SUPERHUMAN POWERS! πŸ˜‰

As a donor, they took the stem cells from a peripheral in my arm. Very similar to the method of a plasma donation. No surgery required. No general anaesthesia needed either. πŸ’ͺπŸ‘

So if you’re thinking of registering on the BMDR just do it! You can register via Australian Red Cross Blood Bank.

I would be so proud so stand beside you in our “group” of life savers. JuliaI’m in! πŸ˜‰

Team Bella: Raising awareness because we BELIEVE in making a difference. Lives matter. We will conquer cancer!!!! πŸ‘Š πŸ‘Š πŸ’ͺ πŸ’ͺΒ πŸŽ—πŸŽ—

Relapse Journey

Day -3 (Pre-conditioning for BMT)

ALL, Pre-B, Standard Relapse
Day -3, Pre-Conditioning, Transplant Ward room 201.

Written 1st August 2017.

This week has been intense (hence the delay in my post). We arrived back at the Children’s on Mon 24/7. Admission into transplant ward by 1pm. This was followed by hyperhydration & administration of the following :- Ursodeoxycholic acid (a medication which reduces the risk of veno occlusive disease of the liver), bactrim daily, fluconozole (antifungal), aciclovor (reduces risk of viral infections). On top of this additional new regime of meds, Bella still needed to take her regular medications, around 8-9 each morning & night.😩☹

On Monday night she reacted @12.8ml of ATG. ATG (Anti-thymocyte globulin) is an infusion of horse or rabbit-derived antibodies against human T cells, in the prevention of graft vs host disease. Basically, Bella was infused with a rabbit antibody. These cells train her T-cells not to reject my stem cells! 😱😱

The reaction occured 3 hr into her infusion. She became agitated & obsessed over using a hairdryer to warm her bed. She refused the Bear Hugger (which is the best thing ever! My favourite piece of equipment at the hospital) πŸ˜‚πŸ˜‚.

Even the tone of her voice changed. She was kicking & screaming-a full blown melt down. 😨I had never seen her so aggressive & out of control- even by oncology roid rage standards! We told her she couldn’t use it in transplant. It would create a particle dust storm- something Bella could not afford, heading into transplant. She was furious. But we knew this was the ATG & steroids talking. The oncology team quickly gave her Lorazapam & fenergan to help settle her & the reaction. It worked. Thankfully, this was

Bella’s IV pole. Quite a collection of IV machines & syringe drivers

the only major reaction which occurred in the past 7 days of pre-conditioning.

 

During the pre-conditioning week she was also given 3 highly potent chemo drugs: Thiotepa (which leaches out onto your skin & can cause burns so Bella had 6 showers per day over its infusion (2nights, 3 days), Bulsulfan & Fludarabine. These drugs would hoprfully obliterate any remaining white lymphoblastic T cells in her marrow, but they would also suppress her marrow. The side effects included extreme nausea, lethergy, headaches, abdo pain & focal point pain.πŸ˜”

Some good news to share. With the last BMA performed Thu 20/7/17 following 3 weeks off chemo, Bella’s MRD result was 0.002! That’s a wonderful result heading into transplant in 2 days!

Bella has been isolated & will remain in her transplant room until doctors deem it safe for her to wander onto the ward post BMT. This will prevent risk of infection (as children under going BMT are at a much higher risk).

For the first time since she was diagnosed 3.4years ago, she asked me tonight, “Mummy, when can I go home?”

I stood in stunned silence, not quite knowing how to respond because she had never asked me this question before. So I asked her, “Why darling?”

And she quietly said, “Because I miss Olivia”. My heart just shattered in to a thousand pieces at the knowlege that we were only 1 week in with possibly 6-8 weeks to go (maybe more dependent recovery). My little petal was already heart-broken with her separation from little sister Olivia. 😒

We hugged one another & wept all of the pain & lost time from our Olivia ❀. Once composed, I gave her a bath to relax & to help her wash her sorrows away.

This week also involved administration of G-CSF (Granulocyte-colony stimulating factor) an injection I needed to have twice daily as a donor. G-CSF is a glycoprotein that stimulates the bone marrow to produce granulocytes and stem cells and to release them into the bloodstream.

The side effects have included headaches/migraine & aches & pains, similar to those experienced when you have the flu. It is a small sacrifice I make as a donor, in the whole scheme of things.

In two days, I am about to give my child a second chance at life. New marrow. New life & the opportunity for a CURE from this insidious disease.

Team Bella : Moving towards a cure. Counting down…2 days to go! Bring it! πŸ‘Š πŸ’ͺ ❀