The Balancing Act
I try to face all situations with optimism and hope and that mindset has been stretched further than I thought possible over the last three weeks. We are on the brink of Cycle 6. The time is flying by but also dragging on at the same time. This feeling of moving backwards and forwards simultaneously is really starting to take its toll on my ability to rationalise quickly and to see the light in the situation. I am questioning everything and finding it hard to make decisions and stick to them. I am usually pretty good at being focussed but the oncology swamp is all consuming at the moment.
This time 3 weeks ago we were getting ready for the 5th cycle and I was also getting ready to say goodbye to my Grandma. In a strange way my Grandma’s sudden passing took my mind away from the worry and ‘scanxiety’ I would normally experience on the lead up to Jack’s scans. And since then the worry about Jack has taken over some of the grief I should probably be experiencing after the loss.
We met with his consultant Dr Howell for the second time since he was referred to her in February. She had met with the multi-disciplinary team (MDT) before our appointment and was able to give us some preliminary feedback about the MRI and xray results. I was in the room listening but I consciously shelved the information to review after I had dealt with the funeral the next day.
The results were OK. They showed that the two lesions on his skull are starting to heal (great news), the hip lesion looks the same and the ‘T2 flair’ on the dentate nuclei part of the cerebellum (back of the brain which is linked to the central nervous system) is still there. I have read a lot of papers about the various treatment plans for LCH and the specific disease presentation that Jack has. The skull lesions healed quickly last time around but we are unclear as to how long the hip lesion has been there as he hadn’t had an xray on that part of his body since initial diagnosis. Obviously he has until the end of July on the current part of his treatment and the results from these scans indicated we should continue until that point and then review.
Dr Howell suggested that if there is still no improvement in the hip lesion we may look at a salvage therapy including another chemo drug called ‘Cladribine’ which is likely to be another 6 cycles and will take us in to early 2019. I am pretty sure that’s the way things will be headed unless the final 3 cycles of cytarabine work wonders and the lesion drastically improves. On hearing this we were both obviously a bit disappointed. We want him off all the drugs as soon as possible but at the same time we want to reduce the chances of him relapsing again to zero. We discussed the options for some new trial drugs called MEK and BRAF inhibitors, but the issue is they don’t cure they just put the disease to sleep, they inhibit its ability to multiply basically.
We are making decisions as best we can with the information we have available at the moment but I can’t help myself wondering what a conversation with Jack in 10 or 20- years time might sound like as he asks us about his oncology journey. I hope he would understand that we have read, discussed and reasoned at length and all we want is the best outcome for him. We want minimal impact now and in the long-term. We want minimal side effects and discomfort for him. We want normality to resume for him and the rest of us as quickly as possible.
The great thing about kids is they bounce back really fast from bumps in the road. They have a row with their school pal and it rarely lingers. They have a day in bed feeling unwell and as soon as that has passed they want to go and play out again. When your child is on chemo and having a bad day you wish they could get up and run around. Then when they are up to running around; you wish they would slow down and reserve the energy for when the next bad day tips up. It’s a constant battle to achieve balance.
Speaking of which we have had a few instances of what we would deem as ‘bad behaviour’ in the last 3 weeks. Nothing major but more than enough ‘lip’ and some little instances of bad attitude have slipped in. I can read your mind. You’re thinking ‘give the kid a break, he’s got a lot on his plate’ aren’t you? I agree, BUT there is a fine line that oncology (and any other parent with a child who requires regular hospital trips) must manage. The thing is, at some point in (hopefully) the not too distant future, Jack will return to being a ‘normal kid’ and we are so conscious of not letting his experiences on the oncology ward define him in a negative way. People are so kind and thoughtful and Jack often gets ‘treated’ in various ways. Now, he is always very polite and grateful for the treats but sometimes I worry that if there are too many treats it will become the norm for him and then when he is back to ‘normal’ he will expect stuff all the time and obviously, that’s not how it works. He’s 7 and he doesn’t make a link with the fact he gets ‘spoiled’ a lot more than some of his friends, with is diagnosis. In fact, he doesn’t even know that he’s being spoiled because it’s just the norm for him!! I have such an internal battle balancing this.
I think the reason for it bothering me so much is because an ex-colleague of Lee’s once said ‘Oh he’s done alright off the back of it, hasn’t he?’ when talking to Lee about the fact Jack had been given the opportunity to meet the Manchester United players during his first battle with LCH. I interpreted that as ‘look on the brightside’ he’s getting to do all this mint stuff BECAUSE he has a cancer diagnosis. I can’t be the only person who feels a bit riled by this? We would trade the hospital visits, MRI scans, port accesses, fevers, vomiting, peripheral neuropathy, missed school days, meetings with a clinical psychologist, and uncertainty tomorrow, if we could. We have found a way to ease the trudging the oncology swamp and hell yeah, we use some of the ‘treats’ as pure bribery to get him to ‘be brave’. But where do we stop? How do we know if we have passed the point of no return and ruined him for life?! Is he being lippy because we have let it slip once too often or is it the steroids? Was he always going to have the occasional cheeky outburst and are we now doing our own heads in about something that was going to happen anyway?
I don’t know the answers but getting the questions out there has made a bit of room in my mind.
One little win for the last few weeks is that Dr Howell has agreed to start steroids a few days before chemo, he started them yesterday. I am really hopeful that this next cycle is going to be the most straight forward. I laughed aloud as I typed that. I am ‘hopeful’ but I am no longer naïve to think I have got this thing nailed and understood. Each time I think we know the score we get another curve ball. I am sure there’ll be more to update in the next week.
Keep them positive vibes coming, I am so pleased that people are still interested in hearing my thoughts on the experience. It’s bloody marvellous seeing the posts shared and the awareness of these rare diseases being raised. It’s a glimmer of light to me and I am so grateful to everyone who does read and share.