Frank and his brother Stan, a year older than him,  Mum (me, Emma) and Dad, Eddie were a normal run of the mill family. We were wondering where to go camping this year, fretting about homework and future GCSE results, etc. which I now realise is seriously underrated.

Aged 11 Frank had a limp from March/April 2019, it was barely noticeable, and somebody had fallen on him in rugby, so we thought little of it.  It wasn’t giving him much pain (which I now know is a warning sign).  None of the classic signs were there other than the limp.  No weight loss, night sweats, weakness, fatigue etc.  Late April we went on holiday, and he noticed he couldn’t keep up with friends.  We went to the GP in May; it was written it off as a hamstring strain. 

Frank's Story

In June, I took him back to the GP in the June as it was getting worse.  Frank acted and performed, and his big audition of the year (panto) was in Sept which was 3 months away.

At this point 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, called me back in that afternoon (‘how very efficient!’ I thought) and the bombshell was dropped.  Poor guy, I really didn’t see it coming. 

An MRI first thing the following morning followed by a biopsy confirmed a rare bone cancer called osteosarcoma.  He had a tumour in his right femur measuring about 18cm at that point, I think.  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 ended up doing it 3 or 4 times and the last one was when we had to tell them Frank’s diagnosis was terminal.

Treatment

Frank had about 12 weeks of intensive high toxicity chemo 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 chemo.  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.  It’s very fancy and can be lengthened magnetically as his femur’s growth plate was removed as part of the surgery. 

He finished his chemo in March 2020 and rang the ‘end of treatment bell’ at Birmingham Children’s Hospital.  We all 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).  There was readjusting to be made: as a family we spent 9 months often living separately.  Thank goodness we live in the day and age we do, and a parent can be with the child 100% of the time.

 

Frank's Surgery

He had his limb salvage surgery to leg 2 in May 2020.  By this time Covid restrictions had set in and both parents could not be present.  That was tough. 

We always knew there was a fair chance the cancer could come back but 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 really OTSD (‘ongoing’ not ‘post’) would be more accurate.  I might add I know little about mental health but that’s my view and that of a lot of cancer parents I have spoken with. 

 

Return to school

After surgery to leg 2 Frank regained strength and started back at school that September (2020). Frank always dealt with the situation magnificently.  No ‘why me’ - he just got on with it at every stage, never moaned, and as parents he gave us the easiest ride a child could give. 

We are so proud of the person he was and his positive practical attitude even during very very difficult times.

This is where the #BeMoreFrank attitude came from.

 

 

Difficult times

November 2020’s routine chest CT showed the lung dots had turned into small tumours which were removed surgically in December.  There were multiple complications and he ended up with 4 surgeries, 3 of which were emergencies, rather than the 1 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 for him).  We spent our second consecutive New Year’s Eve in hospital.

Special Memories

His follow up CT in early Feb 2021 showed new, multiple tumours had developed.  They were inoperable and ultimately took his life. There were chemo options, none of which would cure him, and he opted for the least invasive as he firmly valued quality over quantity of his remaining time. 

At that point he’d done 20 months of cancer, 9 surgeries, and I think at last count we’d done about 115 nights in a range of 4 (I think) hospitals.  He’d had enough. After being diagnosed as terminal he had a few great months with gradual and consistent deterioration. He flew in helicopters, fired guns, had silly string fights, created a caravan den with his bestie, saw friends, drove in supercars, had a home cinema set up in the garden: all fantastic but heart-breaking.

Frank's Request

What followed was a few very very bad weeks and he died age 13 at home - which he was adamant he wanted - on 4th June 2021, with his family. Frank also has a big sister Josie with children of her own. She was able to spend lots of time with him toward the end which was special for him.

Frank's funeral was held on the summer solstice, 2 years to the day from diagnosis. His only funeral request was that the dog attend, which she did, wearing an LFC snood. He was a big LFC fan!

#BeMoreFrank

Frank was simply amazing, cracking jokes until he was no longer able to speak or communicate. His friends and family try to take a little of this forward in his honour and we all try to seize the day, be braver. Be kinder. Be More Frank.

We are terribly grateful for the love and support shown to Frank, and to us as a family. One of the things we found most beneficial was simply cold hard cash. The additional costs - particularly living so far from Birmingham Children’s Hospital - added up in no time. Food, fuel, parking, hotels… Not to mention one parent giving up work entirely and the other limping through trying to hold down a job.

We feel it is important to #BeMoreFrank and help others in a similar position therefore the #BeMoreFrank fund has been established. Funds raised in Frank’s name will go solely and exclusively to givie support grants to families with a child diagnosed with cancer in Herefordshire.