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Karen Gregory raised £1,405 from 72 supporters
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Closed 16/01/2019
Weʼve raised £1,405 to help us put a smile on Michael’s face after another devastating blow to his health this week 😢
- North Walsham
- Funded on Wednesday, 16th January 2019
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Story
Forgive me for including a brief recap so I can get my head around this daunting task.
Michael is just 14 years old & below is a summary of how much he has been through, we want to do something to try & put a smile on his face this christmas & new year, we have an idea of a special gift that would hopefully put a smile on his face after another blow just this week to his health 😢
Michael has endured treatment after toxic treatment for a shade over five years now. He had been nine-years-old when he was first diagnosed with Acute Lymphoblastic Leukaemia (ALL), and in that time the insidious disease had been beaten back twice.
The collateral damage has been huge; Michael's joints had been damaged by avascular necrosis sustained during first four years of treatment, leaving him physically disabled but 'in remission'.
Tragically, the leukaemia found refuge in one of the few enclosed spaces the chemotherapy cannot reach: the eyeball. It was only rediscovered when Michael reported the loss of his vision in one eye. In a sickening blow, he was now half-blind and facing a new round of treatment to once again fight off the cancer.
This time, the treatment led to an extended stay in Bristol Royal Infirmary where Michael received a 'lethal' dose of chemotherapy and radiotherapy to clear the way for a stem cell transplant, giving rise to a new, healthy immune system which would not produce cancerous blood cells.
That should have been the end of it.
But it wasn't.
Now Michael was back under the care of Doctor Mike the Consultant Haematologist (guided by the virtual presence of Bristol-based Adam the Oncology Wizard). They seemed to be fighting a rearguard action against Michael's new immune system which had misidentified his lung tissue as foreign and started to attack it.
Only a month ago, the medical staff had been confident that Michael's breathing problems were reversible - an unfortunate but treatable side effect of the stem cell graft. But as often seems to be the way with Michael's health, his fortunes fell to the wrong side.
Monday 11th December a call made by Michael’s mum, Laura, to her brother Mat asking could he get to Addenbrookes. On arrival at Addenbrookes Michael’s uncle Mat found that things seemed at first to be relatively calm and controlled. He found Michael in the teenagers' room playing on his iPad. His face was cartoonishly fat from the phenomenally high dose of steroid pulses he was being given. A far cry from the gaunt, skeletal figure he had been only three weeks before when he could not eat due to oral ulceration. He wanted to play a board game with him, but he needed to find out what was going on first.
Mat had seen further text messages sent by Laura so he had an inkling of the latest news involving worsening lung function (now down to 20%) and the need for other forms of treatment, but he tried to divine how much Michael had been told. In his usual matter-of-fact manner, he told Mat he had to have a new central catheter line put in which would be even bigger than his old Hickman line, but that he’d have to ask his Mum about any other stuff.
Laura was elsewhere, but she arrived just as Mat was about to go looking for her. They began to discuss the latest developments, but Michael quickly became agitated and aggressive. It's the steroids, Laura explained, but they wondered if it was also Michael's way of responding to the news. We watched a bit of The Martian to diffuse the tension, then Michael went to play on his console in the corner.
Laura and Mat went for a walk to chat more freely. In the parents' room, she explained that Mike was 'worried'. Michael hadn't responded to the treatment as expected. All three monthly high-dose steroidal pulses had already been given in just three weeks and still his lung function was diminishing. The only remaining treatment was two-fold: a drug called Rituximab, which would destroy the B cells responsible for attacking his lung tissue, and a three month process similar to dialysis called extra-corporeal photopheresis (ECP), in which Michael's blood would be pumped out gradually once a week and exposed to ultraviolet light to neutralise his white blood cells. The steroids would also continue.
Most chillingly, if this treatment failed, the only remaining option would be a lung transplant, if that was even viable.
It was clear from Laura's tearful, resigned tone that she felt this treatment was the hail mary pass, the last chance. And the odds are long.
It's hard to know what else to say. This has been the longest, cruelest, most horrific slow-motion car crash that has spanned half a decade - over a third of Michael's entire lifetime - during which time Laura has also lost both parents and one of their partners. Michael has endured so much. Yet there is more to come.
At time of writing, Michael has been put on a nil-by-mouth regime as he awaits confirmation of a surgery slot to install his central catheter line sometime in the afternoon of Tuesday 11th December. We will support him, distract him and care for him as best we can.
I know Laura is incredibly grateful for all the support she gets from her friends old and new. She has told me many times of all the incredible kindness she experiences from you all. I would like to take this opportunity to I express how much I share this gratitude and to emphasise how much she and Michael, as well as Nathan and Karl, need that support right now.
We just want to give this special boy something to smile about again, any funds left after getting Michael’s special gift will be passed onto his family to help them through this difficult time.
Updates
1
6 years ago
Karen Gregory
6 years agoShare this update to help us raise more
Karen Gregory started crowdfunding
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Supporters
72
Paula
Jan 12, 2019
£5.00
Marcus Hodges
Jan 7, 2019
The best of luck to you all.Donation on behalf of Kazik Wrana.
£20.00
Anonymous
Jan 1, 2019
£10.00
Tracey Buck
Dec 25, 2018
£25.00
Sian Macgowan
Dec 25, 2018
£20.00
Mark Leeder
Dec 23, 2018
Wishing Michael and his family a peaceful Christmas. Stay strong. From Bev and Mark
£20.00
Anonymous
Dec 21, 2018
£40.00
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Karen Gregory
North Walsham
Michael’s Journey was set up to support Michael, 14 & his family throughout treatment, Michael has been given another devastating blow to his health & we want to give him something to smile about, Michael loves Gaming & our aim is to get something relevant to that for hospital.