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

Relapse Journey

Day 37: The poo & wee dance

Team Bella update: Day 37, ALL Standard Relapse

Some good news finally! So, the oedema (Inflammation /water retention) & urine retention has subsided (with lots of help from the administration of albumin & ferosemide) over the past 24hrs. Bella has now expelled most of the fluid from her body. 1L to go. Today’s weight 18.7kg. She’s starting to become more alert but still very flat/ lethargic following a challenging week..

Constipation/distended abdomen/abdo pain – has also improved as her bowels opened 6 times! I have requested she come off the morphine bolus as it was having too many side effects (i.e constipation, urine rentention, making her doecile, bedridden, numbing everything etc). It still amazes me how much poop can come from such a tiny body!

When they are so unwell the muscle lining, villi in their gut just stops working effectively leading to constant constipation. To celebrate mum & aunties Elaine & Huong Huong did the poo & wee dance! Bella was not in the least bit impressed. πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚ Any oncology parent/ carer will appreciate our elation!

Bella’s counts are stable. Neutrophils are 0.5 (but these can be artificially inflated due to the dexmethosone -steriods). Hb 89. Platelets 38. She may need to transfuse over the weekend-so thank you to our blood donors out there! Team Bella ❀ you.

Overall, she is on the improve. Mum feels a little less stressed so I am going home for 1 night to spend some quality time with my Chibi & hubby Futoshi.

I understand so well why Bella would prefer me in there. She is scared. She isn’t being selfish by keeping me in with her-but she knows that I fully understand & I am in synch with her medical needs. She is so practical & intuitive beyond her 7 years. She thought about my request to spend one night home with Olivia & agreed. She knows her little sister also needs mummy. I am my way home now to surprise Chibi!

Team Bella: Kicking oedema & constipation out onto the curb.

Relapse Journey

Day 36: Poison ball

Day 36 Pre-B ALL Relapse

Picture this: Team Bella standing in the middle of a game of “poison ball” but instead of the one ball being tossed our direction, 3-4 are tossed at any time, from any direction. 😱😱😱

This week has made me feel exactly like this. We’ve had 1, 2, 3 & even 4 medical issues thrown at Bella but sometimes her ailing body, just simply cannot cope! So it starts to shut down.

But Bella never once complains. She doesn’t throw a tantrum because the nurse needs to take bloods. Do obs constantly over night. Or the 5 machines incessantly beep driving (mainly mum) up the wall. She quietly tells me, “Sore tummy mummy. Can I have more morphine?”😒

This is our fight. This is our journey. So many times I’ve thought , please just transfer the pain to me because I can’t bare to watch her suffer another day. Another hour. Another minute. Another second.😒

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Another tumultuous 48hr for team Bella. Following port removal Bella developed quite severe fluid retention (cause: low albumin levels) leading to swelling/inflammation everywhere. Cause: Excessive amounts of fluid -in the form of antibiotics had to be given intravenously through the peripheral (as her central line -port was removed due to infection). It had run it’s course. Bella had used it for 3.5yrs. πŸ™

Her body unable to absorb over 250ml/hr. Her weighted fluid intake/mass is calculated at 58ml/hr. She was given 5 times the dose her little body could cope with. 😱😱😱😱😱

To provide you with an idea of how much fluid she was retaining:
She had put on over 2kg fluid in under 2 days. Weight prior to surgery/fluid retention=17.4kg. Now she weighed 19.4kg! 😯

My poor baby looked like a Cabbage Patch doll! Her face, legs & body was swollen beyond the normal, expected steriod/chemo inflammation range.

Bella had to also contend with urine retention. Most prob caused by the morphine. I was concerned & requested the oncologists to look into this. She could not wee. It wasn’t a UTI. Her wee was also dark orange/brown. Not normal considering meds given this week weren’t coloured to explain marked urine colouring. Colour indicates severe dehydration & possibly other issues which doctors will investigate today. She has also been extremely thirsty indicating low Na levels in her blood stream. Oncologist gave her Frusemide to help her to urinate but the issue still persists this morning.

Morphine: works like a double edged sword. Numbed pain but had so many side effects! 😱 Constipation meds: when to request it, when to withhold it. Every single thing you do for an onc patient needed to be balanced. Otherwise their condition could deteriorate in the matter of a day if we get it wrong!

I requested after- hours review because Bella’s abdo pain hadn’t improved. We needed to rule out constipation causing distension & abdo pain? Dr Trung (after onc Drs arrived 11.30pm. Reviewed Bella. X-ray done without Bella having to leave her room. Results indicated she was indeed constipated. Last bowel movement 24/4/17.

There is also a lot of air in her abdomen & fluid retention which needs to be addressed today.

Two hours sleep last night. But that’s ok. I’ll sneak in a nap sometime today. Besides, I’m not the patient enduring this constant attack on her body. I am merely watching on the sidelines, praying, hoping for a break for our Bella.

Shared Rooms/Double Rooms:

I had met Wed (yesterday) with Mary Mc Gowan (Manager Parent Advidory Commitee Oncology Dept). I had discussed an idea I had RE: Shared room/Double Room issues oncology families face when admitted into those rooms. Most families dread being placed into one. I certainly prefer my own, private room to support & care for my child.

For any onc family, these shared rooms can present another level of distress upon an already overwhelmed family.

There is a curtain providing a partition b/w the two rooms. Every single noise, confidential discussion spoken in either rooms is shared. Β πŸ€”πŸ€”

My idea:
Could PAG place a glass partition in the centre of either room to remove the “white noise” & issues surrounding confidentiality?? I told her, RCH has this partition in double rooms in ICU why can’t we apply it to the oncology ward? She asked me to leave it with her. This partition would only solve the confidentiality issue, but not the cross-contamination issue. We cannot change the world, but we can help bring change to our oncology ward.

Yesterday I met with Mary,Β she is meeting with RCH Projects Team later this week to discuss the partition. It is going to happen in the coming months! I couldn’t believe how fast my idea had translated into a result. A win for ALL of the beautiful oncology family who travel this treacherous journey. Team Bella is in your corner!

I believe that everything happens for a reason. Team Bella has several causes close to our hearts now. Raising awareness about Childhood cancer, Increasing Blood donations, increasing ethnic diversity within the International Bone Marrow donor registry, supporting organisations which have supported us through this journey like Challenge, Β Camp Quality Victoria.

We want to make a difference! Raising awareness.

Team Bella: Never give up! πŸ’ͺπŸ‘Šβ€πŸ’šπŸ’™πŸ’›πŸ’œ

Relapse Journey

Day 33: Some days we feel defeated

Day 33: Bella has had an terribly rough 48hrs. Extreme abdominal cramps which required grading up in her pain meds to morphine boluses. Nausea followed by large vomits of bile. Buscopan charted to ease cramping & the infectious team have come to review her port. We have been informed it will be removed in the next couple days. They will replace it with Hickman line-readying her body for BMT in July 😱😱

Bella is still febrile 37.7 degrees @ 5am this morning. Bella’s tolerance with febrile neutropenia is 37 degrees (not 38 degrees) as the high dose of dexmethosone (steroids) she is on can mask the true temperature. RCH is running 3 different antibiotics (amicayson, ceftazidime & vancamycine). Full maintenance fluid also going to replace electrolytes etc as her appetite has been compromised due to the infection.

Port needle removed thank goodness (de-accessed ) as this was the point of infection. This was the initial reason we came back in. It looked pretty red & infected once the needle was removed.

Bella has been so lethargic (bedridden ) with zero appetite. Although she has asked for H2O. I hope she turns the corner soon. It’s heart-breaking watching them go through so much, every single day.

Team Bella: some days we feel defeated. Each day presents a new challenge. Relentless. 😩 But we NEVER give up!πŸ’ͺπŸ‘Š
❀❀❀

Relapse Journey

Day 33: Surgery

Update on Bella: Day 33 ALL, Relapse
Surgery: Infected portacath removed

We went into theatre at 10.30am this morning to have the infected port removed. Yay! She came out at 12.30pm. The surgery went well. But she was tachycardic post theatre, so they kept her in for review. Just to ensure no bleedout occured to explain the abnormal high heart rate. (Bleeding could have occured as a result of the removal of the portacath).They also did a chest x-ray (at her bedside with mobile x-ray machine). Pretty cool I thought! Nurses gave her a saline bolus & thankfully her heart rate stabilised & we returned to the ward. She is now sleeping off the GA & recovering.

Surgeons had intended to insert a periphal piccline but they couldn’t get a vien. So they ran a peripheral from her foot. Now she has two, one arm & one foot peripheral. 😊

Next week, she will have the BMA to obtain the MRD result following the end of re-induction. Regardless of the result, Bella will go to transplant.

The following 1.5 wk will be counts recovery (no chemo) to allow her body to recover before the next big chemo cycle.😨😡

She is resting & doing well! Thank you for everyone’s love & prayers.

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

Relapse Journey

Day 32: We are family

We are family ❀

Day 32: Pre-B, ALL Standard Relapse

I feel so blessed that no matter how hard things get, I know that our families wrap us in a cocoon which is filled with so much love.

Team Team: Never give up hope & faith to conquer cancer! β€πŸ’šπŸ’™πŸ’›πŸ’œ

Relapse Journey

Abbey Solo

“I want to inspire people. I want someone to look at me and say because of you I didn’t give up”. Anonymous.

It was written in our stars that Team Bella were meant to cross paths with the Solo family (Malia, Solo, Abbeygael, Jasmine & Joshua) -Team Abstar. Your family provided us with love, guidance & strength in the face of adversity.

Maria Solo, I am so grateful that Merridy had introduced us in that kitchen on our first day in RCH 28/3/14. You were the first mum & then family whom we met when we arrived on Kookaburra ward following initial diagnosis. You guided me through the overwhelming week which was the toughest.

Team Bella hopes to provide that same wisdom of experience, guiding light to any of our fellow oncology families who ever need our support. ❀

On this cancer journey, which is often so challenging, requires one to build oncology connections. As we travel this treacherous road together-as one family. United. Strength in numbers I say.πŸ‘ŠπŸ’ͺ

Love you Abstar our beautiful, precious angel πŸ˜‡ You are Team Bella’s guiding light as we travel through our relapse journey.πŸ‘£πŸ‘£πŸ‘£πŸ‘£ We know you are watching over us. We love & miss youβ€πŸ’š.

Team Bella: Never give up!

Home 005 – A+ Abbey Solo Foundation

PURCHASE TICKETS A+ Abbey Solo Foundation A+ Abbey Solo Foundation To honour Abbey Solo A+ (A positive) not only signifies her blood type but also represents her positive attitude towards life and particularly life’s challenges. She was an inspiring young girl, full of wisdom and empathy beyond her years. Her compassion, positivity and generosity of …

Source: www.abbeysolofoundation.org/

Relapse Journey

Back

Back ED. Bella febrile neutropenia this morning spiking at 37.6 degrees.πŸ€’πŸ˜· As soon as she hit’s 37 Alie had advised us to bring her back in due to Bella still being in the high risk phase of re-induction. Her port may be infected. It’s looking red & raised. Doctors may rest it & are putting in a canula to administer ceftazidime & vancomycine (broad spectrum antibiotics).

She is looking very miserable & is very flat (extreme fatigue) at the moment. Abdominal pain, headache, zero apetite & won’t even drink H2O & has nausea. The usual oncology symptoms.😦

But, we really enjoyed every minute of being home (even though it only lasted 2 days!)πŸ˜„

Team Bella : Just riding that roller coaster, coz that’s what we do! πŸ’ͺπŸ‘πŸ‘Šβ€

Β 
Relapse Journey

Feeling Thankful

Mind blowing! So we are HOME. Discharged yesterday. 😊

Alie (RCH) coordinator comes to Bella’s room & tells me, “I need to have a chat with you Vanie”. I thought it was about Bella’s counts but she said, “How do you feel about going home?”

My brain synapses started to go into overdrive-wow. Home. So naturally my response was after 28 days of Bella being confined to the oncology ward, ” Really?? Bloody oath, I want to go home!!” πŸ˜‚πŸ˜‚ LOL

I was initially apprehensive though because Bella is actually still neutropenic. Zero counts. Hence my surprise at being allowed to go home. πŸ˜‰ RCH usually only discharge patients with a 0.2 neutrophil count. She has none. But overall, Bella’s marrow appeared to be stable & not too suppressed following 2 weeks of induction. Her platelets & haemoglobin is holding. RCH understands how long term stays can have a huge impact on their patients & family-mentally.

So she provided me with Bella’s care plan. Two whole weeks at home (Woot! Woot!) before we commence the next gruelling phase of treatment.

I also bumped into our consultant oncologist Rachel who gave me a big hug in the corridor. She said after a brief chat, you (Bella) will go to transplant. I appreciated her honesty. I’d rather have these 2 weeks at home to psych myself up & care for Bella & be PREPARED for our next intense treatment phase.

When we arrived home the most excited person was Olivia. Bella was spot on. She understands her little sister so well. As soon as she knew we were were going to be discharged, she said, “Mummy, Olivia is going to be so excited”.

When Olivia came through the door, she was beyond happy! Hugging Bella & I. Making the funniest facial expressions & saying, “Oh my Gawd. I can’t believe you are home!”

This journey. What a roller coaster ride of emotions. It teaches you so much.

Family. United as one. My everything. ❀

Team Bella: Never give up!

Relapse Journey

Day 28: Unfiltered reflections

Unfiltered reflections from an oncology mother. Apologies in advance to my community if my post is confronting but awareness & understanding is what I am about. In staying true to myself, raw honesty is healing for me & my family as we travel through this cancer journey for a 2nd time.

Please unfollow me if my posts are distressing. I will not be offended. 😊
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“Magical moments captured, in adversity, will only bring triumph of the human spirit”.

From a carer/mother perspective, creating connections & kinship during our cancer journey is not only healing for the mind, but for your entire body & soul.

Oncology parents need this, but so do the children. Especially the children. They are the patients after all.

Team Bella is so blessed to have met the most beautiful families on our journey. Even through despair, being able to reach out to others who “get it” makes a huge difference. Travelling that similar journey brings support, empathy, connectedness, laughter, encouragement, resilience & teaches us all how we can still GIVE love to others even under difficult circumstances.

This runs even deeper for our children who are the patients. They are the ones who live through the treatment. Losing their beautiful hair. Being in pain & suffering from a multitude of chemo related side effects: mucositis, localised pain in their bodies, learning impairment, mental health issues…the list goes on. Being away from their family, school friends & pets. Their CHILDHOOD is essentially disrupted during intense treatment. Undergoing years of toxic chemotherapy to keep them alive but at the same time, bring both short/long term health issues. 😒😱

In reality, as parents we make that difficult decision to play “God”. We make the choice to offer them the life-saving chemotherapy or other therapies to sustain their life. Which parent wouldn’t????

How do we make better a difficult situation? We build friendships. We engage in art, music, play therapy -which all combine to make this journey tolerable.

I have seen first hand how these connections have prevented her from becoming withdrawn & depressed during treatment. As a parent, I am mindful of this benefit so my family & I provide her with guidance to create these special bonds. To reach out to others. How she manages the friendship will be entirely up to her.

These friendships help to keep her motivated to get out of bed each morning. Looking forward to sharing the new day with her friend.

Both Bella & Rosie have come out of their “shells” in the matter of a day. I went out for the day yesterday, to get some reprieve, & came back to a bright, bubbly child who wanted to share her excitement of having such a wonderful day with her new friend. It gives her back CONTROL in a journey which unfortunately takes away their right to make life decisions & of course medical decisions ( as parents we need to provide this as they are minors). But this friendship thing-it’s giving them back control!

As parents we can see the dramatic healing a special bond can have for a patient. Especially when you are stuck on Kookaburra ward due to neutropenia (day 28 today for Bella)-so if you’re in good company, well that’s a bonus!!

Team Bella : Never give up! πŸ‘ŠπŸ’ͺπŸ‘­