Cancer Survivor Story

Cancer Doesn’t End When Chemo Does

Ryan finished his chemotherapy treatment on his brother's 18th birthday in May 2017. The last two years and eight months were a blur of stress. Yet coming to the end of treatment coincided perfectly with Cancer Survivors Day on the first Sunday in June, each year, so what better way to mark this day than with our own survivor story.

Ryan's weight at diagnosis was a staggeringly poor 42kg. He had lost so much weight not being physically able to eat due to the tumour in his throat, but with thanks to his own determination and the feeding tube that he had. Ryan's weight as we start his final chemo cycle....drum roll....prepare yourselves.... was an amazing 57kg. A year on in 2018 and despite going through treatment for the second time after relapse. Ryan weighs an impressive 65kg.

Chemotherapy Cycle six

Started on Monday, 1 May 2017 for hydration and the week went well without any drama. His final chemo took place on Friday, 5 May which also happens to be my oldest son’s 18th Birthday. We did discuss whether or not we should try and change the date so that it wasn't on Owen’s birthday but we wanted to not have another week of chemo hanging over our heads and Owen was happy to get it done and out the way so we decided to keep it to the same dates and have a double celebration. Owen and his girlfriend drove across South Wales to meet us in Cardiff, spending time with Ryan on the ward, before Dadi Skilts and I took Owen and his girlfriend for a cheeky Nando’s down at Cardiff Bay. On Wednesday 3rd May 2017, Ry had complained of jaw pain. The doctor wanted an x-ray as the steroids Ryan is on can cause problems. I went with her hunch as she is rarely wrong and she was the one that had thought to do the random blood monitor that led to the adrenal diagnosis. The Doctors were very quick to come back to us to discuss the results...ready for it… His wisdom teeth are coming through. Sorry to scare you but even the docs giggled as it was nice for them they said to not have to give bad news for once. Although in all seriousness he is at a slight risk of infection as they break through, so needs to be extra careful with oral care. Ryan was clearly eager to get chemo well and truly behind him. Not only did he clear his chemo levels a day earlier than he has ever done so previously, but the post-chemo blood levels were also the second-best discharge blood levels he has ever had.

Maintenance

We were expecting maintenance would be between two and three years and although that was slightly longer than I was expecting I know that maintenance won't be as hard going as the chemo course and at least we get to be home for few weeks, for him to recover his blood count after chemo before we begin talking about a maintenance plan. Then on 18 May, I received the most surreal phone call from oncology. Ryan doesn't need any maintenance. His treatment is over. We have been discharged. He can go back to school. I could barely speak down the phone as I tried to process the news. A nurse will come to take out his PEG tube at home and our local hospital will arrange a day operation to have his Hickman line removed. We don't ever have to go to TCT again. The reason they had said 2 years is because they had assumed it would be the same as Leukaemia, but they have received confirmation from Japan that SMILE is different. Ryan had aggressive cancer, that required aggressive treatment, but it is now done. Finished. Over.  I could not believe it. However, this welcomed shock was to be short-lived when Ryan relapsed just three months later and began three years of Immunotherapy treatment called Pembrolizumab. The nurse came out on 22 May to remove the feeding tube from his stomach, but it made Ryan quite sick so we had to double dose his hydrocortisone meds, but he was still being sick again on the following morning, so I took him straight to Carmarthen hospital as I did not want it to get to the point where he went into adrenal crisis.  The doctors ran some tests and he had several hours of observations before the medics were happy that it was a Gastric irritation after the removal rather than any problem with his adrenals. The following link is a really useful article the discusses When your Child’s Treatment Ends. It has detailed advice for coping with trying to adjust back to some sort of normality post-cancer.

Maintenance

We were expecting maintenance would be between two and three years and although that was slightly longer than I was expecting I know that maintenance won't be as hard going as the chemo course and at least we get to be home for few weeks, for him to recover his blood count after chemo before we begin talk about maintenance plan.

Then on 18 May I received the most surreal phone call from oncology. Ryan doesn't need any maintenance. His treatment is over. We have been discharged. He can go back to school. I could barely speak down the phone as I tried to process the news. A nurse will come to take out his PeG tube at home and our local hospital will arrange a day operation to have his hickman line removed. We don't ever have to go to TCT again.

The reason they had said 2 years is because they had assumed it would be the same as the Leukemias, but they have received confirmation from Japan that SMILE is different. Ryan had an aggressive cancer, that required an aggressive treatment, but it is now done. Finished. Over.  I can't believe it.

Cancer Doesn’t End When Chemo Does

The nurse came out on 22 May to remove the feeding tube from his stomach, but it made Ryan quite sick so we had to double dose is hydrocortisone meds, but he was still being sick again on the Wednesday morning, so I took him straight to Carmarthen hospital as I didn't want it to get to the point where he went into adrenal crisis.  The docs ran some test and he had several hours of obs before the medics were happy that it was a Gastric irritation after the removal rather than any problem with this adrenals.

The following link is a really useful article the discusses When your Child’s Treatment Ends. It has detailed advice for coping with trying to adjust back to some sort of normality post cancer.

Latch Welsh Children's Cancer Charity.

On a more positive point I am honoured to have been asked by my friend Emma to help her promote her Ironman Challenge for Latch Cancer Charity on behalf of Ryan.

Emma has supported Ryan educationally for many years as Autism Advisory Teacher for Carmarthenshire and in 2017 she supported him on his cancer journey by competing in the Ironman triathlon which includes swimming 2.4 miles, cycling 112 miles and running a 26.2 mile marathon all of which has to be completed within 17 hours.

Please see Emma's Just Giving page for more details on the Ironman Challenge and how you can donate to LATCH.

The South Wales Guardian also picked up Emma's Latch fundraising and wrote a feature on her and Ryan.

Thank you all so much for all your support. 💜