Harry's Healing Fund

2020 was the year that changed our world; you could say it stopped entirely. This is true for all of us. However, our story bears a stark difference to most.

Like many of you reading this now, every so often we’d see or hear of a family pleading for donations that could make it possible to help their loved one. With sympathy, we’d give what we could, never imagining that we’d ever experience or understand anything of the horrors they lived through every day. That was, until April 2020, when we were suddenly struck with the trauma and instant grief that comes with a life limiting diagnosis.

Whilst families up and down the country stood outside their homes clapping for the NHS, we sat anxiously outside a hospital ward about to be told the earth-shattering news that our precious Harry, had the most aggressive type of brain cancer; Grade IV Glioblastoma. Even more challenging, he presented an extremely rare case with the fact that instead of being in his brain, it had begun and spread throughout his spine and was therefore - due to its location - inoperable.

Background

Previously outstandingly fit and a seemingly healthy 24 year old, Harry’s daily routine consisted of going to the gym, running and swimming - all in preparation for the Army training he was due to begin imminently. His physical performance was hindered when he started to experience unusual back pain in March 2020. First suspected to be a herniated disc, he was sent home with some strong anti inflammatories to rest. Over the week or so that followed, he began to lose sensation in his feet which rapidly spread up his right leg. An urgent MRI resulted in immediate referral to our nearest Neurology specialists where Harry learned (alone) that his pain was being caused by a 4.5cm tumour in his spine. He endured 7 hours of intensive spinal surgery to obtain a sample which revealed his diagnosis whilst further scans confirmed spinal metastases. Within a couple of weeks, Harry lost all sensation and movement from the waist down

Treatment

In June 2020, Harry completed 6 weeks of high dosage radiotherapy to his brain and spine in combination with Temozolomide chemotherapy. We breathed a huge sigh of relief when told the fantastic news that this had resulted in significant shrinkage to all areas of growth. Continuing on with another 4 cycles of Temozolomide, Harry was making excellent progress with daily physiotherapy and started to regain some movement in his legs again. In November 2020, he even reached his goal of standing by the end of the year (albeit with a power assisted machine)! We were so overjoyed to see such encouraging signs. But later the same month, a review scan told us otherwise. Despite the chemotherapy, there had been significant progression. Shortly afterwards, Harry lost all leg function again. To say we are devastated is an understatement of great magnitude.

This month (January 2021) Harry began a second-line chemotherapy, Lomustine. We are told there is only a 40% chance of this having any effect at all, even if that effect is just to stabilise. On average, Glioblastoma patients live 8 months from this point - less if treatment doesn’t work. This is the last option on offer to us under the NHS.


What we need

We have learned that treatment options under our public health system are extremely limited. If we wish to access further options - experimental though they are - we need to look towards private clinics and trials and WE’VE GOT TO ACT NOW!

Our first steps are to reach out to specialists far and wide and engage in consultations with private clinicians to introduce drug protocols and supplements that have shown potential to increase the effectiveness of Harry’s treatment. We must also discover his eligibility for some of the experimental treatment going on in German clinics involving multi peptide vaccines and immunotherapy.

Aside from the cost of drugs and trials, Harry’s travel requirements are far from simple and would necessitate a private patient transport ambulance (and crew) every time he should need to visit a clinic. To get to Germany would be a challenge logistically but not impossible as long as we have the funds.

Final note

Harry is at the centre of all our lives; a desperately loved and adored son, brother, fiancé, friend, grandson, cousin, nephew and all-round valued community member.  None of these further options will be possible for us without the generosity of others and so we plead to you now - please give what you can so that we can continue to try to keep this extraordinary man in our lives.