3 Years in Remission
In May 2017 Ryan finished his 6 gruelling cycles of Chemotherapy and was in remission for 3 months before his cancer returned in September 2017. I wrote about our first 3 month cancer free milestone in our blog post here.
In August 2020 Ryan once again finished treatment. This time he completed 3 years of Immunotherapy treatment and in November 2020 Ryan had tests done to confirm he is once again in remission.
This is, of course, outstanding news but we were muted in any celebrations as it was such early days and we had been here once before.
Ryan has been having regular check-ups every 3 months and in May 2021 we were able to confirm he has reached the 9-month milestone which was phenomenal news.
Massive Scare - Relapse #3, ALMOST.
Tuesday 4 October 2022. Ryan mentioned to me about an Ulcer on the roof of his mouth. I took photos and monitored for a couple of weeks before we start to panic too much.😳 Thursday 27 October 2022. Sadly Ryan has had to have yet another Biopsy at Cardiff Dental Hospital for the Ulcerated mass on the roof of his mouth. I had emailed photos to his Lymphoma nurse on Tuesday 25 October as it hasn't healed and she liaised with his oncology consultant who agreed it needs further investigation. Are we really going through this shit again. ❔️❔️❔️
3 weeks ago Ryan mentioned he had developed an ulcer on the roof of his mouth. It wasn't healing. I had been taking weekly photos and liaising with his consultant by email and phone. She agreed that it now needed further investigations hence the appointment at the Dental Hospital. He had full EBV PCR bloods done again at the Teenage Cancer Trust unit, then onto the Dental hospital at UHW where photographs were taken by the Maxillofacial (MaxFax) surgeons who then did the biopsy. The ulcerated mass was on the junction of his soft and hard palate. Ryan has a follow up appointment with the MaxFax team on 11.11.22 to discuss the results and then on to see his oncologist. Ry had two stitches and could not eat any hot food for 24 hours. We stocked up on ice cream. He reluctantly agreed to take some paracetamol and went to bed early as the local anaesthetic began wearing off and he was struggling to speak. Sunday 30 October 2022. With everything going on we decided not to book anything for Ryan's 21st birthday on 10 November. Ryan really didn't want to do anything and have no fuss. He has agreed to a family pizza takeout with with his brother and sister-in-law on the day of his birthday. Friday 11 November 2022. Home from Cardiff for his Biopsy follow up with the MaxFax team at the Dental Hospital. No confirmed diagnosis as yet. The biopsy has had to go for Immuno-histo-chemisty (IHC) testing as the cells are showing "basal changes" (i.e. cancer) that is in keeping with NKTCell Lymphoma but as the EBV blood test was negative they want to check other types of cancer before they "call" (his words) a firm diagnosis. The IHC results are due back next Wednesday (16th) and there is a Multidisciplinary Team (MDT) Meeting scheduled on Wednesday to discuss treatment options/plans. The reason they wanted to keep today's appointment is because they wanted some further photographs to compare growth and changes. Ryan's oncologist is going to ring me on Wednesday after the MDT meeting.
Wednesday 16 November 2022. No phone call received from the oncologist as expected. We have however had a call from the PET scan department at Cardiff hospital confirming an appointment for Friday 18 Nov at 12:30 pm. PET scans are done in confirmed cases of cancer to determine how far the cancer has spread. So I have emailed Ryan's Lymphoma nurse, to ask as there are still no confirmed biopsy results, is this scan to help make a diagnosis or to stage or both? 😕
Wednesday 23 November 2022. Dr R. has just called. They finally had the MDT meeting today to discuss all the results from the 2 biopsies, blood tests and PET Scan.
Ryan has *NOT* relapsed. There is *NO* sign of any cancer.
The first biopsy showed cell changes which caused the confusion and there have been extensive further tests done that show there is cell reaction and inflammation happening which the PET scan also confirms but they don't know why. Not a clue. The MaxFax team were convinced it was Lymphoma.
Ryan is now being referred back to the Maxillofacial team at Cardiff as they are interested in trying to establish what is going on. Another medical marvel of uniqueness to baffle the experts and Dr R. has asked to be kept in the loop too.
Ryan however is not as elated as us. He said "well if it isn't cancer what is it?" and when I tried to explain he then said... "it isn't cancer yet".
BUT that is Ry. He needs time to process and never gets particularly excited. Autism is very black and white. No grey and this is grey.
The team at Cardiff are still concerned as it isn't painful and quite an area of 'diseased' skin in his soft palate area so still some question marks as it can't really be left as is. If that makes sense.
I am of the opinion though it doesn't matter what it is. It isn't a relapse. 💕
Since the scare, Ry has continued to improve so well that next years appointment is currently set to be a phone call only, unless we have any further concerns. Although we are still cautiously optimistic we are once again beginning to plan ahead for the future, after having our lives on hold for so many years. Ryan has been liaising with Work Wales. A recruitment agent to start the process of looking for work. They have helped him to prepare a CV and have also given him some valuable interview experience. Ryan is now volunteering once a week at Swansea Community Farm and we have covered more on that in a separate blog post.
We have also been contacting driving instructors for some lessons but so far everyone is completely booked up due to backlogs caused by the Coronavirus lockdowns. We will keep trying and hopefully will be able to secure a place with an instructor soon.