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! 🎗
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.🚥🚧🚧🚥 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.😉💪
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 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.🤗👍
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! 😊💪💪
Team Bella: Nearly at the finish line. One day at a time. Resolute & we Never ever give up! 💪👊
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:
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. 😄
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! 😉😁
Team Bella :❤ 2nd chances, new life. Bring it!!!Never give up! 💪👊😆😆
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.
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!
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. 😑 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. 😣
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! 😴
Futoshi & 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 😣
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.😑
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! 💪👊💪👊💪👊Never give up!