The Preliminary Halfway Point

Believe you can and you’re half way there, Theodore Roosevelt.

Well in a complete whirlwind of appointments, admissions, clinic visits, temperature spikes and bad reactions it seems we have reached the halfway point of what is known as ‘Induction Chemo’. This period is a total of 24 weeks (though ‘chemo week’ is every 3 weeks for 4 days). A friend said that when you reach a milestone like ‘halfway’ you feel like your making progress, you are moving forward, maybe you are winning? We will know if we’re really winning on 21st May when Jack has his mid-way review; MRI, ultrasound and full body X-ray.

It’s been a little while since I properly updated the blog on Jack’s progress. Over the past few months he has been working through the ‘possible side effects’ we were told about at the start like a kid swapping footy stickers ‘got, need, got, got got’ here is the ‘got’ list; nausea, vomiting, temperatures, rash, swelling, drowsiness, dizziness, constipation, aches and pains, neuropathy, clumsiness, immense hunger, total lack of appetite, roid rage. They aren’t all at the same time and they vary in intensity and whether we can counter it with some kind of potion or exercise but there are a couple that are causing little niggles in my mind. The great thing is that when we go to clinic he is sort of ‘triaged’ by one of the nurses who asks about general wellbeing. This is the chance to mention the effects since we were last in.

At his latest appointment we discussed how his knees are a scabby mess because he keeps falling over. One of the side effects of Vincristine is tightening in the muscles and neuropathy. Jack was seen by the physio team on his first appointment so they could assess his ability before they started treatment. When we met again we discovered that he has lost his reflexes in his knees and ankles. Apparently this is really common in kids on this particular chemo and it may get worse as the treatment continues, it may or may not return after completion. The bit that’s worrying me is that the lack of reflexes can identify an issue with the spinal chord or peripheral nerves being damaged. I know its likely that it will be the chemo but I like to try and be a step ahead of the ‘maybes’ so will keep my eye on this.

I have also noticed his handwriting has become a little untidy, his two wonderful teachers have also commented that it’s a bit more ‘spidery’ than usual and so we mentioned this to the MDT at Alder Hey. Apparently fine motor skills come under Occupational Therapy so another referral has been made. The list of specialists now involved in Jack’s care is as follows; neurology, oncology, endocrinology, clinical psychology, dentist, physiotherapy and Occupational Therapy. You could say we are getting our monies worth out of the bloody marvellous NHS.

It’s such a blessing to have access to all of this knowledge and skill and to not have to worry. We are also VERY fortunate that all of Jack’s treatment and care is currently funded completely through the NHS. If you aren’t aware there are some cancers where treatment is either not available here or you have to travel abroad for it. I can’t even imagine being told theirs nothing the docs here can do. I know a number of families who have had to rally and fundraise to get their child treated abroad. I take my hat off to them as that whole additional worry on top of what is already so challenging is unthinkable.

We see ourselves as being ‘lucky’ in the kids cancer world. We don’t have to do this campaigning to pay for our boys treatment, we haven’t had to shave all his hair off (but it’s definitely gotten really thin on top like last time), he has never had to have an NG tube or ride in a wheelchair because he’s too weak to walk and so on. BUT he has had loads of the crap side effects, we do have to double check if he is allowed to participate in certain activities/sports. We have to vet people who he is around in case they share some unwanted germs with him, and we cant go further than an hour from Alder Hey without consent from his consultant. As far as cancer shit sticks go, ours isn’t too bad and so we choose to try and pay back to the cancer community with awareness raising (generally through this blog and other social media outlets) and raising funds for research through a little charity called ‘HistioUK’. We have set up a fund in Jack’s name with the catchy title ‘The Jack Daley Histio Fund’ and we have a team page on Justgiving so everyone can help to achieve our pledge of £50,000. There is a huge list of supporters who are helping Lee & I this year. We have people taking part in half marathons, the Welsh 3 peak challenge, a Zumbathon, 24 hour football match, Tough Mudder and the nice things like ‘afternoon tea’ and a gala dinner. It’s giving us something to focus on that isn’t the nasty ‘big c’ and obviously the charity and other people will benefit too.

So there we are, halfway through induction. An even balance of positive and negatives, on reflection. My goal is to make the second half of induction and beyond more in favour of the positives.

Lastly, I just wanted to say that I really appreciate those who continue to read and ask questions about the stuff I’ve been sharing. I had a bit of a wobble last month about what I was doing, whether it was benefiting me more than anyone else and lot of other negative questions. That night, I received a message from a lady in the states who’s son had recently been diagnosed with LCH and she thanked me for sharing the story and being so honest with it. It reminded me of my propose and really spurred me on to continue. THANK YOU.

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I'm a 34 year old Mum of two from Liverpool. My son Jack was diagnosed & successfully treated for a rare blood cancer called Langerhans Cell Histiocytosis in 2014. He has recently relapsed so I have decided to share the journey. My reason for being so open this time round is three fold; I want to raise awareness of childhood cancer, I want to reach those parents & families who are just getting a diagnosis & (selfishly) I find writing therapeutic and feel that sharing the story will help me get my own head around things.

3 thoughts on “The Preliminary Halfway Point”

  1. What a milestone! I have everything crossed for you on the 21st. Dylan has peripheral neuropathy & walks on his toes a lot. His handwriting has also become large & spidery due to vincristine; the side effects are never ending. I understand your wobble with regard to sharing but I think what you’re doing is brilliant…keep going!
    Love as always xx

    Liked by 1 person

  2. Please keep sharing Jack’s journey, Rachel. You are really raising awareness and making a MASSIVE difference, I’m sure.
    You ALL inspire me so much, I cannot even begin to tell you.
    Lots of love and big hugs. ❤️❤️❤️

    Liked by 1 person

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