Welcome to Chapter Three of Otto the bear and Caroline’s candid account of her journey with a rare childhood cancer, Rhabdomyosarcoma (RMS), in her head. Otto was with Caroline for every test, scan and procedure during her 9 months of treatment in the UK and America and here he tells the story from his perspective, with a little help from Caroline of course (and Wild Mummy’s diary)!
If you missed the previous chapters you can read them here: Chapter One and Chapter Two.
Here’s Chapter 3, on the verge of diagnosis.
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The Consultant, Cancer and the Headphones
WRITTEN 29 AUGUST 2017 & 09 JANUARY 2018 AT HOME
March 6th was results day…
At home in the morning Caroline was angry with pain from her head. When her Mummy asked if she wanted a cuddle Caroline said ‘If I’m not cross there’s potential but if I’m cross it might be dangerous!’ She eventually let her Mummy cuddle her! We went to a hospital called The Freeman.
We went into a small room and they said that Caroline was having a hearing test and they put headphones on her. I wondered how they could test her hearing with headphones on. I thought it was completely pointless but Caroline told me the headphones played different sounds and she had to press a button when she could hear them.
After that we went to the RVI again and met a doctor called Gail. The doctors like to be called by their first names on the children’s ward, not Doctor. Gail is a Consultant but Caroline didn’t know much about what that was. We discovered that a Consultant is a specialist in a particular type of medicine.
Caroline’s Grandma and Gump were there with us and everyone seemed to be very tense and nervous, especially Caroline. She was holding me really tight when the doctor called us in. Caroline told me after that she was nervous and scared but not sure why.
When we went in the doctor told Caroline that it was cancer…
When she found out that it was cancer Caroline cried and then gave me a HUGE hug. It made me feel odd.
Gail said they couldn’t operate to take the tumour out because of the nerves in Caroline’s face and head, and that it would be 9 months of strong drugs to kill the cancer and possibly a long trip to America for radiotherapy. We found out what all that meant later.
Then Caroline had to have another scan. It was called a CT scan apparently. She had this one to check if the cancer was in her lungs or kidneys. It’s similar to an MRI scanner but the doughnut shape is thinner and on the inside there is a light that changes colour and a CT scan is about a minimum 10 seconds, maximum about 2 minutes whereas an MRI can be an hour or more. I think Caroline’s CT was about 10 seconds. I was on Caroline’s feet so I didn’t affect the scan.
We were all awake very late and we had another night in the awful hospital beds! (Caroline’s Mummy says the beds weren’t that bad but me and Caroline just didn’t want to be there). Most of the nights we were in hospital we were awake until about 12 midnight. That night Caroline came up with some questions to ask Gail: –
- What is cancer? Gail told us that cancer is a condition where cells grow uncontrollably.
- How many others have they seen with this type of cancer? She said she has seen lots of children with this type of cancer although it is very rare compared to most other cancers.
- Where does it come from? She said that nobody really knows where most cancers come from or why. We all have cells in our body that go out of control all the time but usually our body deals with them and then sometimes it doesn’t and that’s why the cancer comes. They don’t know why the body suddenly can’t deal with it.
Back in the next day Caroline had another operation. I know what one is now! This one was to put a tube in her chest that would help give her the medicines to get rid of the cancer in the next few months. I didn’t know why she’d have to have the tube stuck in her for so long. They call it a Central Line or Hickman Line. They can put medicines in as well as take blood out.
Caroline asked if she would feel the drugs going in once the central line was inserted and Gail said some of the drugs feel a bit cold but otherwise she wouldn’t feel anything.
They also took two bone samples from both her hips, did a lumbar puncture (apparently that’s a test in the spine bone to see if there is cancer there) and stitched up the biopsy wound in Caroline’s mouth that had come open over the weekend. Caroline said the stitches should have stayed in for 60 to 90 days. (I think they came out because she talks so much!)
They also put a feeding tube in Caroline’s nose, which nobody was expecting, as somebody had got her weight 5kg too low and they thought she couldn’t eat on her own. When Caroline woke up with that she was VERY grumpy and made the nurses take it out very shortly after we got back to the room! Caroline was determined to do treatment without a feeding line.
And we had another night in hospital. They took so much blood that I’m surprised Caroline had any left in her body after that! It was to test her kidneys were working properly.
Next day Caroline had another of those ultrasound scans with jelly, this one was to check her heart was normal and later she had a gamma ray bone scan of her whole body taken in sections while she lay on a bed with me at her feet again! Caroline says she doesn’t remember much about these few days.
All the scans were OK which meant that the cancer hadn’t spread from Caroline’s head to anywhere else. Everyone seemed overjoyed except Caroline because there was too much going on for her to take in all at once. That afternoon she started chemo. I had no idea what that was but it couldn’t be good because they put lots of bad stuff into the tube in her chest.
Caroline got very sick after this and we didn’t leave hospital for 19 days until March 24th. You’ll find out more in the next chapter. But look, even though she felt so bad she still managed to smile when I photo-bombed her picture, which I’m surprised about!
AND NEXT TIME – Otto will be learning about chemotherapy, speech therapy and psychologists! In the meantime bye from the bear and have a grrreat day!
Chapter 4 coming soon!!
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To read more about Caroline’s cancer journey click Caroline’s Rainbow.
Reach Out for Support
If your child has been diagnosed with cancer, or anyone you know has been affected and is looking for support, help or information, PLEASE don’t hesitate to reach out and get in touch with me – you can use the contact form on the website or message me via Facebook at Kids of the Wild and I will respond personally.
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What a journey you have been on Otto and Caroline. I think you are both amazing and your Mummy and Daddy are pretty awesome too! Keep up the great writing. Xx
Thanks Tracy, yes Caroline’s Mummy and Daddy are pretty awesome and so is Caroline love Otto Xx
That was such a well written account of what you had to go through. I think you and Otto will be giving other children with cancer lots of comfort by telling your story in such a wonderful way. Looking forward to the next chapter! Xx
Thanks Jo-jo, Caroline’s Mummy’s diary helped a little bit about some of the questions. Lots of love from Otto Xx
This is absolutely brilliant. Otto is such a good writer, and has an incredible memory for the last 9 months. Did he write it all down in a diary as he went alone so that he wouldn’t forget? I have to admit that it has been really hard reading this again, re-living it through Otto’s eyes. What an absolutely insane 9 months this has been, and this account has brought the realness of it all back with a bang. A much needed reminder of what horrible and hard things you amazing Caroline have been through these last 9 months. You continue to be my biggest inspiration in life, and I suspect, always will be. Love you so much xxxxxxxx
Thanks Janey/Flapping Sparrow/Agent Flaply whatever that means! No I actually wasn’t keeping a diary but Caroline’s Mummy’s diary helped a little bit too, and Caroline helped a tiny bit as well but otherwise it was just me. I just tell Caroline what to write 📝 and she writes it for me. Lots of love from Otto Xx
This must have been such a horrible stage, the unknown, the fear, the possibilities, they must have made your head swim.
Yes it was a quite horrible and strange time odd and a good experience too. We’re hoping that it might be helpful to other children with cancer.
Otto Xx
Thank you so much for sharing. We just lost a grandma to cancer and one gandpa is going through and apart from feeling broken, feeling lost to explain the kids what is cancer about…this is helping! Lots of hugs, all our prayers for Caroline and her little guys! <3
Caroline says “great to know it’s helping you”. From me (Lucy), thank you so much for the feedback, this is absolutely why Caroline started writing it. Chapter 4 is on the way. Cancer is incredibly difficult to make sense of and explain and the whole process is deeply painful for everyone concerned. It sounds like you are doing all the right things to help your kids and I hope that you’re giving yourself time to process your loss too. If you’d like to chat or email about anything you can message me on the Kids of the Wild Facebook page and I’ll send an email address. Sending hugs to you and your family and prayers for Grandpa’s healing. X
Thank you so much Lucy, Caroline and Otto ! So brave of you to speak out, it feels so difficult for us to point what and how much hurts…All the best to you ladies, you are our heroes! Xo
I think all of it hurts. The injustice, the treatment, the suffering, the loss. There’s grief even for survivors. Keep strong. My post ‘None of This is Ok’ might help. Or maybe give ‘permission’ for some emotional release when needed. It’s what the consultant told us about cancer and it applies as equally to adults as children. Much love