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 😂).
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! 👊💪👊💪👊💪
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. 😉😊