Relapse Journey

Day 39: Body suits

Day 39, ALL Relapse

Undressing my RCH bodysuit, & replacing it with my ‘life’ bodysuit is a must on this journey. But it’s difficult to fold that RCH body suit & stow it away. Even just for 48 hours. Every passing hour is critical & every medication Bella is administered could create new medical issues for the patient. This is an illustration of mummy’s brain whilst outside: πŸ˜”πŸ€”πŸ˜―x36hr

However, I realise and that it is a NECESSITY (if you are lucky enough to have this luxury) for a primary carer of someone with a life-threatening illness to take time out for yourself & your family. Afterall, you need to REBOOT. Nourish that bruised body with the TLC you receive from those on the ‘outside’. It helps to RECHARGE your batteries. Fri night & all day Saturday mummy spent with Olivia & FutoshiΒ = priceless. 😘

The three of us knew we had a piece of the puzzle missing but sometimes you just have to do what you NEED to do.

I knew my amazing sisters Elaine, Huong Huong & Dai were only a phone call away. They would be caring for Bella in my absence. Being the person I am, I had left instructions (just in case anything went wrong) & kindly asked for updates on Bella’s progress every couple hours. Thank you Lanie for your attention to detail. I am thankful that mum & dad didn’t know much about contraception back in those days. Otherwise I would not have this endless layer of ‘cocoon of love’ that surrounds me everyday on our cancer journey.

I think the true story behind why my parents had so many children back in those days: my parents loved children. They grew up in rather large families back in Vietnam.

Did you know I have 7 incredibly loving, often painfully over bearing sibblings? It’s ober-bearing when YOU are the baby. The rebel without a cause. I am it. πŸ˜‚πŸ˜‚πŸ˜‚

In order of eldest to youngest: Thuy #2, SarinaΒ #3, Dai #4, KarlΒ #5, Huong #6, & Elaine #7 then me #8. Historical cultural fact: In China many centuries ago (my decendents come from China BTW), you never called your 1st child #1. Due to the high mortality rate back in the day. Hence my siblings, we were called by numbers starting at #2.Superstition. πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚

There is a10 year gap from my eldest sister & me. πŸ˜‰ Yup, so you can imagine growing up I was considered the spoilt brat. Now as an adult-secretly they all know & accept that I am mum & dad’s favourite little BLACK sheep. πŸ˜‚πŸ˜‚πŸ˜‚ The stories I could share-too long for a FB post.πŸ˜‰

Back to my home coming & reunion with chibi:

Her heart danced with happiness when I surprised her with a ‘boo’ . I was hidden in darkness waiting by the staircase for her to come through the hallway after a shopping excursion with Ma Tu (aunty #4) & Monique.

Her eyes lit up. She ran over & gave me the biggest hug. ALL the while holding my hands-afraid to let go. Moving away. Taking another look at me. Yup. It’s her. That lady I miss sooooo much it hurts. Ditto kid. Makes the two of us. If I could illustrate her happiness, facial expressions clearly for you to undestand to capture her joy, think of every “happy emoticon” πŸ˜€πŸ˜πŸ˜„πŸ˜ŠπŸ˜πŸ€—

She bought a single tub of blue Play Doh BTW. πŸ˜‚πŸ˜‚ Cost=$2. My Olivia was very proud to share this purchase FACT with me as I have kindly asked her to stop asking for gifts from loved ones (when she is out with them) who feel her pain of being separated from mummy & Bella & shower her with gifts. 😱😱😱

It’s been 39 days since ground zero (relapse day) I have had a total of 5 nights out. 12.8% time spent with my Olivia.πŸ˜’πŸ˜” It’s no wonder my beautiful pocket rocket has developed some separation anxiety, comfort eating, attention seeking behaviours & hypersensitivity. She has already been through this aged 3, upon Bella’s diagnosis. Now we are going through it all over again. 😣😫😫

We had a great time together. Sleeping next to one another in mummy’s & daddy’s bed. Spending the day at Dreamworks (Thank you Challenge). Meeting up with my beautiful friend SamanthaΒ & then arriving at my in-laws to a home-cooked Japanese meal: Sukiyaki (my favourite!!!).

Unfortunately, the 48hr I was meant to spend with her, turned into 36hr as I was called into RCH by my sisters because Bella had another medical emergency on hand.

As Tosh, Olivia & I rushed from my in-laws to RCH, she became distraught on the car. Uncle TsubasaΒ & aunty VickyΒ tried to console her, by holding her hand. She was beside herself. It broke my heart when through the tears she said, “Mummy, why do you always have to put Bella first? You promised we could be together tonight!”😭😒

I had just broken that tender & trusting little heart of hers. We had to ‘cut short’ our special reunion time.

I reassured her I would be back home in no time to spend more time with her. β€πŸ’šπŸ’™ I felt gutted. Helpless to make things better for her in that moment.

When we arrived at RCH, she stood back on the sidelines to allow us to assess the situation. She understood. Respectful of Bella’s medical needs. But, nonethless still broken by the series of events unfolding tonight. Bella commented to the nurse on our way back up following an abdo x-ray, “This is my very cheeky sister Olivia.” It was a simple, but important gesture by big sister to acknowledge chibi’s presence.πŸ˜‚

This is our insane cancer journey. It rips your family to pieces in a matter of seconds. But you have to have sticky tape & glue ready to tape it all back together. 😫

Last night Olivia made Bella so happy. Even if it was just for 30 mins of having her energy present. Olivia held & kissed her hand. Then went home with Ma 6 so that mummy could deal with Bella’s current medical issue: the peripheral on her arm had tissued. Ascites (accumulation of fluid in the peritoneal cavity causing abdominal swelling). Thank goodness it was the potassium & glucose line & NOT the vincristine (cytotoxic) chemo med the nurses had pushed through her foot peripheral earlier that day. They bled & flushed the foot peripheral to reassure me it hadn’t tissued.

I have learnt one important rule on this journey. YOU are your child’s best ADVOCATE. Doctors, nurses they are only human & can make mistakes. This will happen. I have witnessed it countless times this week alone!!! But if I am thorough in my caring duties to my precious Bella, then I can help prevent things escalating or push for the oncologists to review what they are doing to ensure Bella is provided with the best care available. ALL oncology patients deserve this level of care. I certainly expect this for my Bella.

Team Bella: Never give up! β€πŸ’šπŸ’™πŸ’›πŸ’œ

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