So much has happened of late. We’ve enjoyed home and have almost felt as if life had returned to our version of normal. Charlie had put on weight and was doing a good impression of Buzz Aldrin’s first steps on the Moon only his were first steps on the patio. We caught the tail end of a summer that didn’t really happen. Charlie collected vegetables from the garden on his tractor and became a child again and I watched him in the evening sun with a smile on my face and a cold bottle of beer in my hand and tasted freedom. And then the day arrived for surgery………
I can’t say I’ve had many days like it. While Charlie was being operated on I spent most of the time sitting in a park, an emotional mess, feeling like it was my insides that were being scraped and pulled apart. Needless to say that although my resolve left me that day, Charlie, true to form came out of an eight hour operation looking bizarrely well. His adrenal gland and part of the tumour have been removed however some tumour has had to be left in as it is wrapped around the aorta and around blood supplies to organs. In the end surgery became too dangerous but it is what I thought it would be – a partial resection. Not as good as a full resection but its a step in the right direction. And Charlie only needed six days in hospital before he was discharged though it was enough to make him drop back down to his skeletal frame and lose his mojo. For a time he was a sad, starving little boy again sitting on the sofa looking out at me with frightened haunted eyes. But a couple of weeks at home and he climbed back up to a better place.
We have also made the big decision not to send Charlie to America for the three drug immunotherapy. He will now stay for immunotherapy in the UK to have the one drug following his high dose chemo and radiotherapy. It’s a decision we’ve not made lightly and has needed months to consider. But having read up well on the subject, talked to other parents and experts we’re happy with the choice we’ve made. My reasons for not sending Charlie to America for immunotherapy are many and have nothing to do with raising enough funds to send him. Predominantly I don’t believe in sending a mentally fragile child thousands of miles to spend six months away from home to endure more treatment that requires him to be hooked up to morphine in order to be able to take it. Sadly there are still children who have had the three drugs and have died anyway and then of course there is the argument that high risk Neuroblastoma may ironically be being overtreated. My view is that high risk Neuroblastoma comes in all shapes and sizes as does each child and yet treatment is not yet sophisticated enough to be tailored to their individual makeup. In Charlie’s case for instance he has always had issues with a leaky gut and weak immune system as autistics are quite often prone to. I think it is vital to seek out therapies that will detoxify his chemo ridden body and build his immune system back up after the battering it has taken and I believe in using all the methods available to fight against it. After all Charlie is an unconventional child so it fits that something unconventional may be the very thing that helps keeps the disease away. So when, late at night, worries come crowding into pockets of my mind, I often see myself taking Charlie into darkest Peru, not for a marmalade sandwich Paddington would be sad to hear, but for a shamanic healing. I can hear you laughing now. She’s lost it. Its desperation. Perhaps. But I’m open minded and someone in my position can’t afford to be anything else. And then I remember to trust my instincts. After all they knew something was drastically wrong with Charlie long, long before any doctor did.
That’s all a maybe for tomorrow. As for today, Charlie is back in Royal Manchester Children’s Hospital having high dose chemo which needs to do its job to lead him to destination No Evidence of Disease. We’ve turned our pad into a sensory palace with coloured lights, bubble tubes, a log fire DVD, some good music, late nights and early mornings. He calls it our cottage and I have to smile and wipe a tear away on hearing that as I give him a drug which will hopefully combat the threat of brain seizure that could happen with the chemo. Days are filled with painting, glueing, sticking, iPad and as much nonsense and laughter as we can find.
So yes we are still on the fundraising trail and are being helped by some incredible people. It’s so easy to say thank you but it will never truly cover how grateful we are for their wanting to help Charlie. Most recently Lakeside Rest Homes Ltd held a charity auction and raised over £5,000 in one afternoon. Breathtaking. Last weekend saw Hayley Melia jump out of a plane raising almost £1,000 and tonight a Pampered Chef event is being held. This week the local paper is launching a text campaign and Mel Barham from Granada Reports will interview me again. She seems really moved by the families at war with this disease enough to want to highlight Neuroblastoma. And it needs highlighting being the poor cousin to all other childhood cancers statistically speaking. The positive to come out of all of this has to be the people you meet along the way and many of those you hope to be able to call friends in years to come.
Finally I’ve mentioned before funny co-incidences occurring. I’ve put it to the back of my mind recently thinking I’m just going a bit mad however before coming back into hospital with Charlie I visited a garage showroom. On the wall was a picture of a gorgeous looking boy with his dogs. It’s not something I usually comment on but I happened to remark on how nice a photo it was. I asked the boy’s name. It was Charlie. Turns out it was the anniversary of his death and when I asked how he died. Yes you’ve guessed it. Neuroblastoma. It rattled me. The chances of that encounter are extremely slim I can tell you. Now I don’t believe in a God but I do have a sense that I’m being told something. And I feel that it’s a warning to be forever on my guard. You see getting to No Evidence of Disease is only half the battle. The other is a lifelong vigil looking to the horizon for any sign of relapse and trying to be balanced in realising that your lives have to be lived and with vigor at the same time. So it may well end up that I will be going to the ends of the Earth to save him. When I watch Charlie sleeping at night in the shadows of our room, darkest Peru seems one of the only sanest options.