We were inspired to launch this challenge by Frank, a pupil at Gwernyfed High School, who has been diagnosed with terminal cancer.
Our Powys Rugby Officer Bronnie Jones wanted to do something to support Frank, and raise funds for the 13-year-old and his family.
Heres Franks story in the words of his mother:
The background is we are (were) just a normal run of the mill family. Previously wed never had significant illnesses or health complaints. We have never lost anybody exceptionally close to us in a tragic way, we were just average' - wondering where to go camping this year, fretting about homework and future GCSE results, etc. I now realise normal is seriously underrated and would give anything in my power to be a normal family again.
In March-April 2019, Frank developed a limp. it was minor, barely noticeable and somebody had fallen on him in school rugby so we thought nothing of it. It wasn't especially giving him pain (which I now know is a warning sign). In fact none of the classic signs were there other than the limp - no weight loss, night sweats, weakness, fatigue etc.
In late April 2019 we went on holiday and he noticed he couldn't keep up with friends. We went to the GP when we returned, the limp was written off as a hamstring strain.
The limp got worse and I took him back to the doctor in the June. By this point Frank had the limp for about 3 months. Still we weren't especially worried, we thought at worst it might be crutches and a leg support for a couple of weeks.
We saw a different GP that time who I think suspected immediately. He sent us straight for an X-ray then the surgery called me back in that afternoon (how very efficient! I thought) He sent Frank out of the room and the bombshell was dropped. Poor doctor, I really didn't have a clue so it cant have been an easy job for him, I remember him mentioning he had a son the same age.
An MRI first thing the following morning followed by a biopsy confirmed osteosarcoma which is a rare cancer within the inner part of the bone. He had a tumour in his right femur measuring about 18cm.
After breaking the news to your husband, sitting your kids down at the kitchen table and telling them one of them has cancer really is up there on my memorable experience list. We've now done it three or four times and the last time we had to tell them it was also going to take Franks life.
Initially, Frank had about 12 weeks of intensive high toxicity chemotherapy and was then re scanned. The tumour had grown; spread to the other femur and there was a question mark over very small dots in his lungs. He switched to an alternative chemotherapy. He had limb salvage surgery to leg 1 in Dec 2019 which is essentially replacing the leg bone from hip to shin with a metal implant. Its very fancy and can be lengthened magnetically as his femur's growth plate was removed as part of the surgery.
Frank finished his chemo in March 2020 and rang the end of treatment bell at Birmingham Childrens Hospital. We celebrated, friends treated him to a surprise limo ride home, it was a time of tentative positivity.
He was as weak as a kitten and the side effects of his chemotherapies were horrendous (nobody talks about the nitty gritty of it. I could write a list). There was readjusting to be made: as a family we spent nine months largely living separately. Thank goodness we live in the day & age we do and a parent can be with the child 100% of the time. Also thank goodness for Ronald McDonald house.
Franko had limb salvage surgery to his other leg in May 2020. By this time Covid restrictions had set in and both parents could not be present. That was really, really tough.
We always knew there was a fair chance the cancer could come back but we were feeling as confident as it is possible to be, given the statistics. Quite honestly as a parent I think PTSD is a 'thing' after experiences like this - but OTSD ('ongoing' not post') would be more accurate.
After surgery to leg 2 Frank regained strength, and started back at school part time in September. He has always dealt with this magnificently. No "why me" - he has just got on with it at every stage and never moaned. As parents he's given us the easiest ride a child possibly could give. We are so proud of the person he is and his positive practical (also sarcastic, cheeky) attitude even during very very difficult times.
Sadly in November 2020, a routine chest CT showed the lung dots had indeed turned into small tumours which were removed surgically in December. There were multiple complications and he ended up with four surgeries - three of which were emergencies - rather than the one which had been planned but at least the tumours were out.
We ended up being in hospital for much of December, it was touch and go whether he would be out for Christmas but they gave him a week's reprieve in the end with a chest drain, from his back, between his ribs (very painful, an infection risk, and cumbersome). We spent our second consecutive New Years Eve in hospital.
His follow up CT in early February showed new, multiple tumours had developed. They are inoperable and will ultimately take his life.
There are chemotherapy options, none of which will cure him but might extend his life. He has opted for the least invasive as he firmly values quality over quantity of his remaining time. He's done 21 months of cancer, nine surgeries, and I think at last count we'd done about 115 nights in a range of four (I think) hospitals. He's had enough of hospitals.
We are terribly grateful for the love and support shown to Frank, and to us as a family. We are overwhelmed. Our future is really difficult to process as he is here and largely well at the moment and fulfilling his bucket list. We're living our very best lives whilst also living our very worst. It is quite confusing.
BUT there are lots of positives, we are so lucky to have this time with him now. Lots of families aren't so lucky. The fundraising and support enables us to be with him, say yes a lot, and fulfil experiences, which he would unlikely have had otherwise. I am also taking A LOT of photo's. He's not terribly impressed.
The main thing to say is thank you, we really appreciate you thinking of us and wanting to include Frank and his bucket (!!) in your fundraising. It will make a practical difference and that is so wonderful.
All the best
For more information on how to take part or donate to the fundraiser, click here.