Being a bit of an optimist I am a believer in the old cliché ‘everything happens for a reason’, today due to various eventualities I had even more reason to believe it.
This morning was the longest ever. I had had a terrible night with the teething Rubester, I wasn’t sleeping well anyway and I ate too much at the carvery yesterday tea time so was killed with heart burn all night! Me and the kids popped to see my Mum who goes away for a few days’ tomorrow and Lee cracked on with some work. We planned to leave the house at 1.30 to take the 30minute drive over to Alder Hey. I had completed a bit of a practice run last week and roughly knew where I was going. As we didn’t really know whether we would be starting treatment as an in or outpatient I had packed two overnight bags for me and Jack, left a load of expressed milk for the boob monster and filled a rucksack with distractions.
We ended up leaving a bit later than planned, this didn’t really make any odds as the clinic at Alder Hey was PACKED. The waiting room there is small in comparison to the one we had in Manchester and it feels like a gold fish bowl with huge glass windows and doors. It was clear that some families had had to bring their whol brood with them because of half term and some of the kids had been dragged out of school in their uniforms to attend. We gave our names and were told to take a seat. Luckily there was PlayStation set up in the corner and a few eager opponents for Jack to play with. We have sat in them waiting areas for many hours in the past and so knew what to expect. We got there at about 2.30, appointment slot was 3.10 and we got called to meet his consultant at 4.15.
You could tell right away that she was rushing, she was pleasant but professional and apologised for keeping us waiting. She went straight in to it as we all sat down.
She had read through Jack’s notes and reviewed his recent MRI and x-rays with the multi-disciplinary team. They agreed with Manchester about the treatment plan and she asked whether we wanted to start at the back end of this week or early next week.
We have plans this weekend for Jack’s Grandmas birthday and so next Monday suited us best, he nodded in agreement.
She went on to explain the side effects of the treatment, she explained that Vincristine has very similar side effects to Vinblastine (the chemo drug Jack had first time round & coped really well with, this is encouraging news). She explained that the prednisolone would be a ‘tapered’ dose, starting high and gradually reducing over the first 8 weeks (roll on the roid rages and midnight munchie!) She then described how the cytarabine (ARA-C) is the one that would cause the most ‘inconvenience’. She explained why this protocol was being followed (basically due to the rarity of the disease consultants were previously given a sort of ‘free reign’ to choose how they treat LCH. The diagnostic tools and research improvements mean that the oncology community are now trying to standardise the treatment. This will ensure the best outcomes for patients and the best chance of picking up any glitches.
I noticed on the treatment schedule that it said after 13weeks there would be a ‘skeletal xray of the skull and hip joint’. I didn’t process this at first as the consultant was responding to Lee’s questions as I was scanning through the paperwork. When she got to it she said ‘As well as the two lesions in the skull, our radiology team have picked up one on the left hip, and we are keen to look in to the white matter on the cerebellum further, as you know this is a sign of Central Nervous System involvement which is concerning’. Lee and I looked at each other thinking the same thing. WHY THE FUCK HASN’T THIS BEEN PICKED UP BEFORE?
Just to recap back to the start of 2017, I had become concerned about Jack having migraines and ALSO complaining of pain in his left groin and leg, usually in the night time. I raised it with his consultant and they agreed to book an MRI in, a week or two later he was admitted through a&e and the on-call consultant who reviewed his notes slipped up about this ‘white matter’, and it was the first time we heard it. We hit the roof and the MRI scan was brought forward. We were advised at the time that the reason that it hadn’t been reported to us was because there were no symptoms. Now, we’ve been pretty level headed throughout the last few years, I don’t consider either of us to be ‘flappers’ when it comes to Jack’s diagnosis and we trust those responsible for his care wholeheartedly. It feels that on reflection this was the start of a series of errors in judgement and once this journey is underway we’ll be picking it up properly. For now, Lee and I agree that we need to document it for the benefit of other LCH parents/patients so they feel confident to trust their instinct and know what symptoms, signs and images need paying attention to.
So as well as the MRI scan being brought forward they SHOULD have completed a full skeletal xray and an ultrasound of the main organs. This wasn’t done until 12months later (two weeks ago) when the brain MRI showed the two new skull lesions. Luckily Jack has been well in general over the last 12 months, the migraines are under control with proplanolol and the leg pain has been more of an inconvenience and one which we put down to normal growing pains. It makes me feel quite sick to think that actually he’s had these pains as a result of a lesion that nobody has picked up. I’m also annoyed with myself for not pursuing it further, a lesson learnt though and I won’t be as laid back in future.
The great news is that Dr Howell and the team at Alder Hey have gone through his case notes in detail. They have picked up the new lesion, they are doing some neuro-psychological and physiological tests and we both felt at ease that he’s now going to be under the review of; oncology, neurology, psychology, endocrinology and radiology. Surely with all these ologists he is in safer hands?!
Dr Howell was great with Jack; she spoke to him in a way he understood when he asked her his list of questions. She told him about the clever people who have researched the best treatments and explained the science behind the lumps. She also explained they don’t really know what causes it yet though.
Despite the news of additional lesions and confirmation that we were right to be concerned about the white matter changes, I feel a lot more upbeat about the whole situation. I know fellow oncology parents past or present will agree that you feel safer when you have appointments to attend and you know that ‘they’ are watching your child. We have a plan, the people who have dedicated their careers to researching, treating and caring for kids like Jack all have their eyes on him. This is such a great comfort and I honestly feel less lonely than I did last week.
Feeling lonely when you are surrounded by people offering help and support is a bit of an odd one, isn’t it? You feel lonely because although you share the ‘highlights’ of what is going on and what the process is you don’t really want to go there with how you’re truly feeling, what your biggest fears are and as one parent has said to me ‘I’m so sorry you are going through this, I know how you must be feeling but I don’t even want to open that door’. The door has been opened and now we’ve had the time to edge through it, it isn’t all that scary after all. We have been there before and we can and will get through it again. We are lucky to be surrounded by an amazing support network in our families and close friends. The Macmillan team at Alder Hey have already started doing their bit too. We know that so long as we buckle up, and focus on the end result we will come out the other end. We’ll have a few battle wounds, we’ll have shed a few tears but ultimately we will all be OK, especially Mr Astro Jack.
The spiritual side of me believes that there’s a reason all this is happening. I’ve always known Jack was a special kid but I am starting to think there’s more to it. More to the ‘why?’ that he keeps bringing up, that perhaps he will go on to study medicine, become a doctor and be part of the movement that solves the riddle once and for all.
Sometimes, not getting what you want is a wonderful stroke of luck.