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 2014 😂😂. Do you want to build a snowman? No thanks 😂😂😂😂 Let it go anyone?? OMG….my kids still like Frozen! Disney will release Frozen 2 soon too! 😱😂
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. 😣😶😔
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. 🤔😫😫🙁
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 times 😂😂😂 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 one 🤔🤔🤔
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! 😔
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!!!!! 👊👊👊💪💪💪