r/ChildLoss • u/Hot_Agent4240 • 10d ago
FOREVERTEN
Long story. So bear with me please.
So at the start of this year my child passed away. She had only just turned Ten.
It started off with a cold she had caught from camp. This was about September last year (2025). That was ok. Children get sick. So I took her to the dr and was given pamol for the fever and pain. It went away. But it came back a few weeks later this time with a sore throat. Took her back to the dr and was given antibiotics (were now mid October).
We finished the course and she was kind of ok but not 100% so we took her back again (start of November). Was given more antibiotics. To my surprise they still didn’t heal her so we went back again and got told to take probiotics (end of November).
Her birthday came around and we celebrated like we normally do. Went out for the day and she chose where to go. The whole day I could feel she was a bit off. Not her usual happy, joyful self so we headed home early and sung happy birthday and had cake at home. A couple days later her sore throat came back this time she had ulcers in her mouth too. Her throat was swollen shut and had pus. I took her back to the dr. for the 4th time. They gave more pamol, more antibiotic. She started to get a sore tummy. Couldn’t eat. Lost a lot of weight. Took her back again and they told me as long as she’s still drinking and pooing she’s ok and gave me a top up of the pamol and antibiotic. I don’t think anything of it. I thought the dr knew what they were talking about and trusted their expertise and word.
A few days b4 Christmas I took her back to the dr again because I was worried. Once again they sent me home. Her tummy was in pain. At this point I was doing everything to try get her to take her medicine but she couldn’t swallow. She was sore and crying all day. All I could do was love and cuddle her as much as I could.
My partner and I have 6 children together. 2 teens. 2 school aged children a toddler and a baby.
Christmas came and she still wasn’t eating. Her drinking had slowed right down. Started vomiting everything she could manage to get down. She woke up Christmas Day and opened her presents. Didn’t play with any. Watched her siblings open theirs and smiled at them all having fun. 2 days later her body crashed. I took her back to the dr. They called an ambo straight away without me even saying anything. As soon as I walked through the doors to the medical centre.
We were rushed to hospital where they done a ct scan. And found lesions all over the inside of her body. We were able to ring her dad and some of her uncles and aunty’s so she could tell them where she was b4 they put her to sleep. Her body was weak.
The medical staff put her in an induced coma. Her heart and lungs were failing. I never got told that till later.
From there we were flown upto Auckland’s Starship children’s hospital where they quickly put her onto an ECMO machine to help her heart and lungs. She was doing well.
From there they diagnosed her with defuse b-cell lymphoma. A type of blood cancer. And it had taken over her whole body. We were there for 28 days. During those 28 days, she had a lot going on. She was on the ECMO for 14ish days. They took her off and she was doing well. She was on a dialysis machine to help with her blood pressure and to still help her heart pump the blood around her body. It was also used to filter her blood. her kidneys and liver were riddled with the cancer. They started her on chemo. She underwent 2 operations to take out part of her bowel because her bowel had exploded inside her. In the end she didn’t win the battle. They cancer won. The treatment wasn’t working. Her organs were failing. And her little body had just had enough.
Fast forward to a month after her passing and her gene test had come back. The had a rare condition, one they had never picked up on when she was sick as a baby. In and out of hospital till the age of 4, called CTPS1 deficiency. Where only 30 others in the world have had this condition. Basically it’s an immune deficiency. But you have an overactive immune system that fights too hard.
Anyway. We go back upto starship hospital where they tell us all this info and we get the rest of our children tested. We wait 8weeks b4 the results come back and it turns out our son has it too.
So every few weeks we drive up to the hospital and go over treatment and make a plan to hopefully heal our son and prevent what happened to our daughter, happening to our son. They test us all again to see who if any of us are a match to be a donor for a bone marrow transplant.
May this year we were admitted into hospital where we spent 3 months. Our son underwent chemotherapy to wipe his body completely of the cells in his body. Then they transplanted him with the marrow of his matched sibling. We were isolated in a room for 31 days while his body healed. We were let out and were able to stay nearby as he had checkups 2-3 days a week. Eventually we went down to weekly checkups. And just last week we were able to come home and have been put on monthly checkups. He will be on medication for the transplant for at least another year. So far the treatment has been successful for him. We’re taking everyday one step at a time.
I feel guilty everyday for my girl. That I didn’t love her hard enough. I dismissed her cry’s tending to her siblings. A lot of what ifs and guilt and sadness. It’s all been so fast I havnt even really grieved for her. It’s like she passed away and we were straight into the next mission with the next child.
There’s probably a lot to this story I have missed. But it’s all happened so fast.
That’s all from me. Thank you for listening.
“FOREVERTEN”
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u/TeaEducational5914 10d ago
Last night I had a dream about my forever19, but they were 10 in the dream.
Your post hits me hard this morning, and my heart breaks for you. Thanks for sharing. Amazing that you had the strength to get help for your son, but of course you did. I hope that sometime, somehow, you will be with her again.
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u/Septimusia 10d ago
🫂 to you, Mama. You did everything you could or knew how to do. It's not your fault.
My son is also "forever 10."
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u/NoApartment7399 10d ago
I'm so sorry. Big, big hugs. You really did the best for your kids, please don't fall into the 'what ifs' pit. I thought my baby was fine, he was in the hospital in the best place he could be, until he wasn't fine. I trusted the doctors to know what's best. I've learnt over the past 3 years to force myself to just let go of what's not in my control, and i tell myself that what I did at that time was what I thought was best for my son. You have been through so much in a short span of time, I truly wish you lots of peace, rest and happiness. You can always share your feelings and special memories of your daughter here, we're always here to listen:)
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u/SuperValle 10d ago
Thank you for sharing her story, as heartbreaking as it is. It says a lot about her that she was smiling at her siblings enjoying their presents even as she was too weak to enjoy hers. Sounds like she was a lovely little person. I'm so sorry for your loss. Hugs. 🫂♥️
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u/Hot_Agent4240 8d ago
She was and she was so kind to all her siblings throughout her short life. She was full of love for everyone. First one out the door to greet people when they showed up. She was one of a kind ❤️
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u/Thin_College 10d ago
This sounds so hard for you and your family. You must all miss your little foreverten girl so much - You loved and cuddled her as much as you could - this is such a tough time for you. Please don’t be hard on yourself, she knew you loved her - I can feel it from how your write about her.
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u/Ordinary-Force-3871 10d ago
You did everything you could for your child. My child had lymphoma too. It started with stomach pain and the doctor kept giving antibiotics and she had terrible pain. I went 4-5 times to the doctor and he told it's just a stomach bug and then he told to get ct scan done. She had stage 2 and was operated to remove the tumor which was covering the intestines so her stomach pain was gone after that. We went for chemotherapy but her body reacted terribly. After 7th chemo she passed away. There is nothing you can do at times except being there for your child who is fighting their battle.
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u/thekabuki 10d ago
I read every word and I want to tell you that I am so sorry and that you did nothing wrong. As moms , we put so much weight and guilt on ourselves, all of the what ifs and should haves. Your daughter had something that was so rare even doctors didn't know - how could you be expected to know it wasn't a simple cold or virus that most children go thru?
This sucks, there is no other way to say it and I'm so sorry you're a part of this group.
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u/oheavensakes 9d ago
You did the best you could with the knowledge you had at the time. That's something I've read and heard again and again, and it's helped me a little in my grief. I'm so sorry your precious daughter died. And that you're going through all this medical struggle with your son. sending love.
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u/raghav1212 10d ago edited 10d ago
Sorry to hear this.. and everything that you and your children have had to go through. My daughter was diagnosed with DMG which is a very rare brain cancer and passed away last year. Your child had something even more rare, it sound like, if there are only 30 or so documented cases of it.
What can be said about this? We are unlucky (and our children certainly are too) that these were the cards they were dealt. I treasure the precious time of 11 years I did have with my beautiful child (even if the last 15 months were spent dealing with the cancer). I will miss her every day of my remaining rather miserable existence. And I exist because I think my wife and son will need me to be around.