April 19, 2022 at 9:15 am #20342
My 6 year old daughter had been undergoing chemotherapy for the last 2 years and 4 months for B-ALL at QCH in Brisbane. We were 3 weeks out from ringing the bell, when we discovered she had relapsed. Even though we were devastated at having to return to living at hospital for treatment, there were still many options available to us, our oncologist was optimistic. We were in re-induction preparing for immunotherapy and a BMT, when she suddenly died of a a fungal infection in her brain. It was growing there, as a runny nose, up her sinuses to her brain. 3 days after her 6th birthday she died in ICU. We were in the safest ward, in the safest room. How does this happen? She went from physically strong and well to dead so quickly. How?
How can I be holding a joyful alive vibrant child one minute, and have nothing but ash the next? How can I be still alive when she is not? It’s wrong. It’s all wrong.
It’s been 21 days tomorrow morning at 7:30am, since she died. It’s early days yet, but I can’t see the point in anything.
I can’t see a future where there is any joy. I have 2 other children, her brothers, 9 & 11. Which people are reminding me all the time, as if I’ve forgotten. And I’m sad for them as well, our happy family is shattered.
April 19, 2022 at 12:04 pm #20434VM-ClaireParticipant
Dear @grievingmum, I’m so sorry to hear of your beautiful daughter’s passing. Your experience sounds so traumatic and I can understand why you’re devastated and why her death feels so wrong. She sounds like a gorgeous child and it makes no sense at all why she’s no longer there with you.
It must be incredibly hard to be strong for your sons while carrying your grief and it doesn’t help to have people ‘reminding you’ that they’re there. I hope you have support around you that understands and doesn’t put pressure on you.
Have you looked into seeing a grief counsellor? I found seeing a counsellor and learning about the five stages of grief was helpful after my brother died suddenly. It helped me realise that the feelings I was experiencing were normal because there were times I thought that I was losing my mind.
Sending you love and healingApril 19, 2022 at 3:48 pm #20435
Hi grievingmum, it’s Jeremy’s mum, I responded to your other post, so glad you found the courage to write again, I’ve been thinking about you.
Tomorrow morning at 11.19am it will be 4 months since I hugged my 19yr old son for the last time. I’ll be sending you a hug at 7.30am…
I wonder if you found that poem about grieving mothers I mentioned, it encapsulates so many of my feelings that I venture to guess you might as well.
The questions you ask, I think we’ll ask ourselves forever, and any ‘answer’ proferred is meaningless, because as you say, it’s just wrong, not meant to happen.
As you know my son underwent a bmt after relapse of t-cell ALL, it was the last option and his twin sister was a perfect donor match. Still he developed gvhd of the lungs, requiring a double lung transplant January last year. He was recovering so well, got a job, his first girlfriend, back into skating, missed a few anti-rejection meds (which no one knew) and was dead within 3 weeks, despite all the best efforts of his doctors.
I remember reading all the potential risks of a bmt. We’re crawling in bacteria all the time so when you’re immuno-suppressed they go crazy. There were 4 kids we’d known since diagnosis undergoing it at the same time. Sadly, one boy died of an infection in his brain very suddenly, like your daughter, the other two didn’t make it either, after months of suffering. I held my breath for 9 years, willing my child to survive. I don’t mean to add to your burden, just reassure you there are many parents who walk by your side.
I first posted here because there’s a long waiting list to see a psych and unfortunately because my son was an adult I no longer had access to the support groups I had relied upon at the children’s hospital. I’m sure you’ve heard of Redkite, they were my saviour, I had a counsellor who’d email me everyday. There’s also camp quality for your boys, and once they turn 12, they have Canteen up until the age of 25. My twins were the face of National Bandanna Day, be brave and shave for many years, I truly encourage you to introduce them, if not already, they were a godsend for my kids.
Your sons know that your love for them has not wavered but may be unsure how to comfort you, or themselves. I’d give them something practical to do with their hands. Maybe they could honour their sister with something handmade, help you plant some flowers or a tree, let them cook dinner, even if it’s baked beans on toast.
Tomorrow is going to be a very hard day, so try to think of some little joy you can add to the day amidst your grief xxxApril 24, 2022 at 8:35 am #20443
Thank you for both your responses. Jezza, I feel like you really have some insight into what is happening. Would it be possible to email me privately so we could chat? I have been looking for someone who understands what it is to lose a child that had been battling, had hope of recovering, and didn’t.
It’s very specific, and I’m finding it hard online. I also was talking to RedKite all through treatment, and my counsellor (Anne) left just before my daughter’s death. So I had a new counsellor (Lis) who didn’t know me at all. It was bad timing.April 24, 2022 at 1:49 pm #20444
Hi grievingmum, I joined this forum in the hope of finding someone who could relate to my story, so yes of course , I’d love to exchange emails with you.
My Redkite counsellor changed careers the very week my son relapsed after 18mths of chemo & radiaton. I was devasted. I tried to connect with another counsellor, but found it too difficult to recount everything from the beginning, but I’d recommend contacting them again, wish I could.
A part of me misses the community of parents in hospital/clinic, we spoke the same language. Meeting in the kitchen cause your child is on steriods and hungry again, or getting ginger beer because they’re nauseous, or just sitting silently together on the grass when they’re finally asleep.
I reckon we spent the best part of Jeremy’s 9 year battle in and out of hospital. Something we also share is we both have other children in the equation. I remember how divided I felt wanting to be in two places at the same time. I hated not being at home for them, but couldn’t leave my son’s side either.
When we were the face of Canteen’s National Bandanna Day, I was asked to write something from my perspective in the brochure. This is what I wrote (hugs)
“The heartache of not being able to make everything better, and the helplessness a parent feels watching their child suffer has been unimaginably challenging. Cancer stole not only Jeremy’s childhood but also that of his three siblings”
I’ll just check if I’m allowed to post my email address here, and be in touch xx. There’s a butterfly in your garden waiting to say hi to you okApril 25, 2022 at 4:58 pm #20447April 28, 2022 at 3:41 pm #20457
Hi grievingmum, I wonder how today is for you. I checked the rules and unfortunately personal info like email addresses cannot be shared on the forum. Don’t want to risk being moderated, perhaps there’s another way. Maybe a counsellor could help us exchange details? Meanwhile, if you feel comfortable chatting here I’ll be listening.
I’m not sure if you read my posts, under buried my son xmas eve, or if anything I write resonates with you, I hope so.
If you’d like to talk in detail about your daughters’ cancer journey, hate that phrase, I am someone who will understand all medical terminology, procedures, the whole hospital experience and the effect on the entire family, as I lived it for 9 long years. I know how confronting being in ICU is, hooked up to so many machines and not being able to stay beside your child. Something I appreciated about my Redkite counsellor was their knowledge of all that’s involved in cancer treatment.
But perhaps you’d rather talk about your daughter bc – before cancer – or the good times in between. I wonder if you had a “Make a Wish’ granted already ?
I remember sitting in clinic waiting for pathology results of a huge lesion my son had on the back of his head (first sign of relapse in hindsight) as we had been granted a week in the Gold Coast, meant to leave the next morning. Prob was with all the theme parks, could he get his head wet yet. It was a last minute yes and we had the best fun. Upon return all the gruelling lead-up work for a bmt commenced. We spent 4 months in an isolation room, and another 8 months isolating at home.
We had another short break a couple of years later staying at a Ronald Mc’Donalds house on the coast. I don’t know if you are already involved with these charities alongside Camp Quality, or if me even mentioning a holiday without your precious daughter is upsetting, it’s just that I am eternally grateful for the opportunities my family were given and have lots of treasured memories.
Ok so I had to walk away from the keyboard for a while there, as tears were blinding my sight. Waves of despair can engulf me many times throughout the day, I hate waking up in the morning the most. There’s a split second where you might have just been dreaming something nice, then a dagger stabs your heart when you remember they are gone. I’m not going to see my sons cheeky smile or hear his chuckle, not today, not ever again on this earth and it’s simply unbearable.
And just as I type this a king parrot has landed on my budgies cage sitting next to me. Thank you my beloved son. Hope to hear from you soon xxApril 28, 2022 at 4:45 pm #20458
Every day is horrible. Constant pain and no end in sight. So much of what you write resonates with me. We had been helping RedKite a bit, https://www.redkite.org.au/news/new-24for24-appeal-is-raising-critical-funds/ this link has a video so you can see what my daughter was like. She had almost made it, the end was in sight. It’s all just so unfair. Six is too young to die. There’s so much she never got to do.
The mornings are definitely the hardest. When my eyes open (at 4:30am-5), I remember. She’s gone.. It’s like a never ending pit. A giant emptiness. The pain is constant.
The day we had to go back into QCH to have a new central line put in, Make-A-Wish threw her an early 6th birthday party at Wet-n-Wild with all her friends. She swam and went on slides (even with her NG tube). We stayed and played all day. She had the best time. She walked into 11B at 6pm in her swimmers with huge bunch of balloons, all tan, healthy and happy. Then the surgeries and chemo started to get her ready for a BMT. By day 17 she was dead.
I’m not sure how things go forward. I’m not sure how to survive.April 28, 2022 at 5:13 pm #20459
I hear you, and feel everything you do. My daughter, twin of my son is the one wearing a black t-shirt. We did our bit too for Canteen and all the be brave and shaves xxxApril 28, 2022 at 6:19 pm #20460
oh my, those ng tubes, my son vomited them up a thousand times, they eventually anchored a gastronomy tube in his stomach as he needed daily interal feeding. I remember looking after the central line at home was so scary. I’m left-handed, could never get the ‘s’ bend right. My son had a million procedures/surgeries/radiation, and I’ve held his hand throughout each and every, but I will never forget the first one. I remember 5 doctors all talking to me, saying things beyond my belief and then fainting. wtf, I just took my son for a blood test, suspected glandular fever , get a script and within an hour we’re in an ambulance , docs telling me he might not survive the night?
We were told that many times, but I never accepted it as a possibility. Don’t take my child, I wailed every single night. Yet it happened.
I also wake each night in the early hours, doesn’t matter what time I go to bed, I just find myself staring out the window at 4am, waiting, yet also dreading the light of a new day. I remember when I had my first born son and he was screaming his head off 24/7, I asked my neighbour who had a 4 yr old, does it get better? She just smiled at me and said nup, it just get’s different. Honest, best advice I ever heard xxApril 28, 2022 at 7:04 pm #20461
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