The look of relief.
“Life is different when we discover what is deeply important to us” (Stephen Covey).
Yesterday was Jack’s 12th time in the MRI machine and god knows how many times under the X-ray machine. His last MRI was 6 months ago and so the team at Alder Hey had a good timeframe to review changes in the images and to see how well the treatment had been working. We are all completely relieved to report that there has been marked improvements on the skull and hip lesions he presented with back in February this year marking the start of his relapse. This doesn’t change the course of treatment, he will continue to take oral chemotherapy until Spring 2020 when we are hopeful he will ‘ring the bell’ and close door on this chapter of his life.
Unfortunately, one of the drugs he has been taking orally (methotrexate) has made his liver work extra hard and his bilirubin levels are at the point that the team advise to stop treatment to give his body time to recover. I noticed the whites of his eyes were ever so slightly yellow a few weeks ago and raised it with the team who have been monitoring it since. He will have bloods again in 2 weeks time which will determine whether they can start administering it again.
A few weeks back in clinic, you might remember me saying he had walked clean in to a door (while walking the corridor with his headphones on and iPad in his hands!) and he banged his face and the area on his chest with his port-a-cath. Since then it hasn’t ‘bled back’ properly, this is a test the nurses do before administering any drugs in to a port or central line. We had to go for x-ray to check it was in the right position. Jack’s consultant had suggested that we could maybe remove his port during maintenance treatment as it’s not needed. I had asked to wait until the results of the scans yesterday before we agreed. Jack’s favourite nurse Tash (and the only one who could successfully access his port without him screaming the ward down) had the pleasure of doing the last flush and we told him he could have it out. As you can see by his face, this meant more than anything to him. I’d be lieing if I didn’t say I am a little apprehensive about it but seeing his little relieved face made me realise it was the right move.
I’ve just got back from meeting his teacher for parents evening, I honestly couldn’t be prouder. He is achieving more than many children at his age who don’t have half the perceived challenges he has had since starting school. He’s excelling in all areas, is popular and caring and has a great attitude to work and school.
Hearing Mr Roberts’ words was a perfectly timed boost for me personally as tomorrow I too am enrolling back at school. A few years ago Lee and I started to explore the possibility of creating an organisation that would provide support to families and children in a similar position to us. It’s no secret that we have always approached Jack’s treatment with an air of optimism and positivity. We felt that this had not only helped us to cope with what our bay was going through but also helped Jack’s ability to cope with the treatment and reciover so well from the bad days. We agreed that we could show others how self-development and self-care in the form of mindfulness, meditation and other holistic practices could help their families too. We discussed offering one to one coaching, peer to peer support and a safe place to explore feelings and methods of overcoming the psychological barriers that arise when parenting a sick kid. The aim is that the project will improve the mental well-being of families and patients who are involved in a long term treatment protocol for a variety of conditions.
In April this year I quit my job and applied for a place on The Lloyds Bank Social Entrepreneurs Start Up Programme, in partnership with the School for Social Entrepreneurs and partly funded by Big Lottery Fund. There were 150 applications; a group interview, panel interview and Dragon’s Den style pitch and I was delighted to be one of the final 20 ‘Social Entrepreneurs’ with a place on this years’ programme. I have a lot of learning to do but I have the most inspiring mentor in my 7 year old hero, and darling son. If he can approach life with such vigour and determination (after all the shit its thrown at him so far) then Mummy can buckle up, get her head down and create an amazing social enterprise that will help other families to grow out of their challenges like a beautiful big Positivitree.