Relapse Journey

Day +25, 211 days since relapse

So this happened this week: Bella gets to leave her isolation room for a walk. Not for a medical procedure but for a nightly walk! Woot! Woot!
Like a koala she clung to mumma at first, tired scared & excited all at once! Not easy when you’ve been confined to your hospital bed for 12 weeks.

Team Bella Update:
Day +25, Pre-B, ALL (High Risk), Deletion p16, Relapse, BMT #2, 211 days since Relapse.

Bella has had a rough trot this week physically. A side effect of her intense 7 month relapse treatment , but more so due to under-going x 2 BMTs back-to-back. Her body probably feels like it’s been hit by a freight train.😣

Sometimes the mind wants to, but the body just can’t.

Before I move on to share Bella’s week in progress, Iet’s clarify a couple definitions which are quite important to our journey. This will explain why bone marrow recipients struggle to regain their strength even after 1 year (or more) & can have many more complications (GvHD) which patients who don’t go through BMT may avoid.

Myelosuppression VS Myelablation.

Myelosuppression is a condition in which bone marrow activity is decreased due to chemotherapy treatment (e.g when Bella was out on Kookaburra ward she had scheduled chemo causing her to become immunosuppressed/neutropenic).

Chemotherapy medicines can result in fewer red blood cells, white blood cells, and platelets. When myelosuppression is severe, it is called myeloablation.

Myeloablation occurs when a patient is given high-dose chemotherapy that kills cells in the bone marrow, including cancer cells. It lowers the number of normal blood-forming cells in the bone marrow, and can cause severe side effects (for example, the oncology team needed to obliterate Bella’s diseased marrow. However a side-effect from long-term immunosuppression is it allowed the BK virus which lay dormant since Aug 8/17 to become active/symptomatic giving Bella much grief with haemophagic cyctystis). Thus, Bella’s marrow is currently myeloablative. Which will explain her extreme lethargy in the coming months & possibly over the year(s) to come.

This week, due to the changes in her demeanor & cold-like symptoms developing, the infectious & oncology team have decided to take action as the CMV (Cytomegalovirus) virus has entered her blood. Previously, it lay harmless in her saliva.

CMV is a common virus in the same family as herpesvirus, and it can infect anyone. Once infected, your body retains the virus for life. Most people don’t know they have CMV because it rarely causes problems in healthy people. But if you’re pregnant or have a weakened immune system, CMV is cause for concern. There was reason for concern as our Consultant originally nominated my stem cells because I had been exposed to CMV & would therefore pass the CMV immunity onto Bella post BMT #1. Futoshi had not been exposed. CMV can lead to pneumonia like symptoms if it escalates. 😱😨😫

Thankfully, there are several different ant-viral treatments available! 😁The oncology team have chosen to commence Bella on Foscarnate (which does not cause immunosuppression). She will remain on this anti-viral until it no longer is detected in her bloodstream.

Today her counts are:
Neuts= 2.42, WWC=3.8, PL=47, Hb=107. They are holding her platelets even improved from 41 to 47 which indicates her bone marrow is actively creating it’s own cells! Woot! Woot!

As we move from week to week, Team Bella does approach road blocks.πŸš₯🚧🚧πŸš₯ CMV will push back our discharge date but that’s fine. These ‘blips’ in our journey does not deter us from getting to that finish line. Steadfast we stand. I can smell discharge & freedom in my veins.

Team Bella is nearing our goal. Yes, she is exhausted. 😣 That’s probably an understatement.

We are doing things on her terms. Giving Bella back control. Self dignity because this journey it breaks you down, over & over again & again. But what doesn’t kill you, can only make you stronger.πŸ˜‰πŸ’ͺ

As they say, “You can scream. You can cry. But you can NEVER give up” Hence this is the reason why I made, “Never give up” our war-cry!

Team Bella : Never give up πŸ’ͺπŸ‘ŠπŸŽ—πŸŽ—πŸŽ—πŸŽ—

Relapse Journey

Day +17, BMT #2

Painting – Bella’s Favourite thing to do!

Team Bella Update:
Day +17, BMT # 2, Relapse Pre-B ALL (high risk), 204 days since relapse.

It’s been just under 1 week since Bella first showed signs of engraftment. We initially received news of 0.07 neuts last Sat. Then since then, Bella’s marrow has been doing well remaining quite stable today with the following results: neutrophils 5.86, WCC=10.1, Hb= 108, & Platelets = 61. This demonstrates that her marrow is producing it’s own cells (slowly). We haven’t needed to tranfuse blood products as often.πŸ€—πŸ‘

Bella is making slow but steady progress. 😊 Her gut is still very neutropenic & causes much abdominal cramping & pain for her. Her cyctistis has all but cleared. Leg/bone pain persistent. The Steriod Induced Diabetes has also improved. With the exception of today, where her blood sugar level had elevated, so she needed an insulin injection.

We are early into our transplant countdown. BMT calendar observes a patient post 100 days (from cell day). This time frame provides doctors with a good indication of how well the transplant has worked.

So at day +30, 60 & 90 patients undergo a BMA to obtain the chimerism (engraftment ) %.

Bella is still dealing with pain associated with her engraftment, a deconditioned gut & body. She spends much of the morning sleeping in & is still only capable of passive activities.

I can see her progress as ‘small’ daily steps. 😍But it all counts. She has endured much esp over the past 7 months! So, we will start physio related activities next week. Excercises to strengthen her muscles as 11 weeks of being confined to your bed can have a huge impact on your physical stamina.

The amazing thing about being in the transplant ward is the comeraderie you can develop with other BMT families. We become one big BMT family/unit. It’s different compared to outside on the oncology ward. Outside, you are free to invite different visitors daily. Inside, you co-exist within a bubble. Interactions with fewer people. There’s is a sense of calmess. Quietness. You get used to it after such a long stay! But you are so deeply grateful for the connection because we provide support to one another. We get what the other feels. It’s all part of this incredible journey which can be both heart-breaking but also triumphant & inspiring! 😊πŸ’ͺπŸ’ͺ

Team Bella: Nearly at the finish line. One day at a time. Resolute & we Never ever give up! πŸ’ͺ πŸ‘Š

Relapse Journey

Drumroll!… BMT #2, Day +11

Drumroll….

Bella pictured today : Day +11= engraftment begins!

Today we received the BEST news imaginable: Bella ENGRAFTED!! Wow…how do I describe the feeling as her mum, carer & advocate -EUROPHORIC?? 😊😁 When I heard the news from our oncologist, I felt like a concrete pylon had been lifted from my shoulders. Finally: good news!!! I could breath again…with more certainty that we might just make it through this arduous journey….

It’s been such a long time coming. 😫 Bella has endured so much to reach this point-so we are so grateful to be able to share this wonderful news with you all!

Even when Bella started experiencing severe pain in her long bones ( starting 2 days ago), down her legs etc I was cautious & just quietly confident that her body was possibly exhibiting early signs of engraftment syndrome.

So, here are the results: with lots of help from GCSF (granulocyte colony stimulating factor) Bella’s blood results are:

WCC= 0.7
Neutrophils = 0.08

We can expect quite a bumpy ride over the coming weeks as Bella’s body adjusts to engrafting daddy’s Futoshi’s stem cells to become her own bone marrow. πŸ˜„

The haemophagic cystitis has improved thank goodness! The main issue Bella is struggling with is pain. I have met with both the Palliative care & Anaesthesia care teams to put together a more comprehensive support plan to better manage Bella’s pain.

At this stage in her journey, having gone through 2 BMTs back-to-back, Bella’s pain is complex & sometimes takes a lot longer for some analgesia to become effective.

Our family are so grateful for the love, support& prayers from all of our family& friends. We know this post will bring lots smiles all around! πŸ˜‰πŸ˜

Team Bella :❀ 2nd chances, new life. Bring it!!!Never give up! πŸ’ͺ πŸ‘Š πŸ˜†πŸ˜†

Relapse Journey

Family Reunion

Our Family together for the first time in 10 weeks

Team Bella update: Pre-B ALL, Relapse, BMT #2, Day +9

So this happened today: our family was re-united for the 1st time after 10 weeks apart. The oncology team, on compassionate grounds allowed Olivia to come in to visit Bella.

Over the past week, on top of the hemorrhagic cystitis, Bella missed her sister terribly! Even taking a bath was a struggle & she refused because she said, “Having a bath reminded me of Olivia!” 😫 With a little help from Ma 7 Elaine, it happened.

Bella and Olivia – so content, just catching up and having a conversation

The room was “electric” as Olivia entered. Bella was on the toilet! But she soon said, “Mum I’m done”.

Bella’s call out to her sister warmed the cockles of my heart. Olivia ran up & embraced her sister. It was hard to believe that these two monkeys (besties) were physically in the same room finally!

Family time=priceless= BEST MEDICINE.

Team Bella: We’ll take one day of togetherness

Relapse Journey

Side Effects and Exhaustion: Day +8, BMT #2

Team Bella Update:
Pre-B ALL Relapse, BMT #2, Day +8 (day 195 since relapse ).

This has been the most exhausting week for Team Bella. She has been so debilitated due to the diagnosis of hemorrhagic cystitis caused by a number of contributing factors: BK virus, cyclophosphamide, TBI etc thus exacerbating the condition.

This bladder infection has caused so much sleep deprivation & discomfort that I could categorically say, it tops our list as one of the worst side effects of treatment thus far. Beating PANCREATITIS. That says alot about the severity of her symptoms. 😱😩

Hemorrhagic cystitis is the sudden onset of hematuria combined with bladder pain and irritative bladder symptoms. Hematuria is blood in the urine. The amount of blood can range from a minute amount that occurs occasionally to frank bright red blood that occurs continuously.There are a variety of causes of hematuria.

Haemophagic cystitis is common in transplant patients. Symptoms include:- urgent need to frequently urinate; extreme pain associated with passing blood clots; inflammed groin area; itchiness & sensitivity over a prolonged period. The extended length of the cyctistis is due to her neutropenic state. πŸ˜‘ Once her body creates neutrophils & white cells she would be able to clear the virus. For now she relies on medical treatment to help fight it. 😣

Bella cried in this picture because I had asked her to take a bath. She said, “I can’t mummy. I always bath with Olivia & if you make me bath, it will remind me of Chibi. I will get sad & it’s boring without her!”

Treatment consists of loading the body with high volume, slightly akaline fluid (around 110ml) bi-carb added for Bella to flush out the sepsis. Akaline water helps to reduce the sting when she passes urine. It has improved a great deal over the past 4 days. Clots have cleared & her urine is clear with only minute traces of blood.

However, this did come at a cost!

Sunday 1/10 Bella (fasted) & we were sent to theatre for catheter insertion. A catheter would potentially allow her to pass urine more easily without having to physically sit on the toilet. However, we were sent back to our room as there was no catheter available? 😣 It was apparently a ‘special order’ item & the resident doctor was not aware of this. To her credit, she did run to Royal Women’s & RMH to obtain one. She located a catheter (12 inch) but not the ideal irrigation type they required. The irrigation catheter allows the nurses to flush her bladder regularly.

By 11.30am we were back in theatre. The urologist would flush out her bladder first & insert the catheter. Simple procedure really, but the catheter insertion needed to be done under GA as previous attempts failed on the ward. Bella was too alert even with midazolam. She’s a very light sleeper! 😴

FutoshiΒ & I were called to theatre recovery after 45 mins. The procedure had been completed. Being a Sun, theatre was mostly deserted. So I recognized Bella’s scream immediately as I entered recovery. It was gut-wrenching & heart-breaking even for a veteran oncology mum to listen to. 😣. I knew how distressed she was! NB: Bella very rarely cries after theatre. She generally recovers well even post surgery.

When I arrived I immediately requested a review with any one of the doctors available (including the anaesthetist), to remove the catheter. They wouldn’t do anything as our oncologist needed to make the decisions. We wait some more 😣

CT

Following the flush & insertion, it appeared Bella’s groin was obviously quite inflammed so having the foreign tube inside exacerbated her pain. It caused spasms which were painful & they’d cycle every 3-6 minutes. 😱
She lay there in pain for 5hrs.😣

You could almost equate it to labour pains without the epidural 😱. At one point she looked up at me and asked, “Am I going to die mummy?”

I told her no. Of course not!! We have skirted past the mortality discussion in the past but she has never been so direct. I knew at that point, she was enduring excruciating pain.😱😭

WTF…my 8 year old lay there in such pain but the medical team could not manage her pain!? We were in a hospital 😷😬

I felt HELPLESSS. I tried to advocate for her but it fell on deaf ears.😣

The theatre nurses really struggled. Several times when I requested grading up her analgesia & giving her clonadine or lorazapam, the request seemed to be too hard. I told them to check her charted meds. At one point I went down to the ward looking for the oncologist & later on Tosh went down to look for our pm nurse because the theatre nurses were hopeless with the pumps!

So we waited some more until the oncologist arrived. He told us Bella needed to keep the catheter in until they completed an ultrasound to see if she had any more blood clots.😯

Another 1.5hr passed. Finally the sonographer arrived & carried out the ultrasound. We waited some more for the images to be sent to the oncology team to be reviewed.πŸ˜‘

At 5pm, we finally moved back downstairs to Bella’s room.

Doctors arrived to inform us Bella’s ultrasound came up clear. No blood clots! So the nurse removed the catheter. In 5 seconds flat. 😊

Was it necessary for Bella, to endure the long period of pain? I don’t think so. If I had known what I do now, I would have physically removed the catheter myself.😬 It was almost torture what she went through. Would the doctors allow their family to endure pain at great lengths with such intensity, I highly doubt it.😫 Set aside the fact that Bella is so physically deconditioned as a result of treatment.

Today her cyctistis has improved with less spasms but the itchiness & pain is still present. This could also be an indication of mucositis (internally in her gastrointestinal lining etc 😣).

Her headaches, abdominal pain is still present. Gut wise, things are improving! She is still on TPN but tolerates the introduction of small easily digestible foods. Her skin is dry & peeling most probably from TBI (Radiation). Dark colouration to her skin is a result of Bulsulfan.

Good gracious me, after the week Bella went through, I feel so honoured & blessed to be her mother. My little WARRIOR & my HERO.

Team Bella : Doing it tough but we’re built tougher! πŸ’ͺπŸ‘ŠπŸ’ͺπŸ‘ŠπŸ’ͺπŸ‘ŠNever give up!

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—