Escalating Capizzi=Escalating Anxiety?

After a wonderful week off chemo, antibiotics and hospitals we are back on the poison. On monday we started the next block of Vega’s treatment regime, called escalating capizzi. The name alone sounds like trouble don’t you think? I had to remove the link for the ukall2003 trial and for Vega’s treatment protocol because they were not working anymore. the reason for this is that a new trial has just been started, called ukall2011 which they are ‘recruiting’ for at the moment. So any newly diagnosed children will now be offered to go on trial for ukall2011. this does not affect Vega or Vega’s treatment in any way so we potter on through our regime, but you won’t be able to have a picture reference until I figure out how to scan in the flowcharts. I have added some links in the medication category for any of you that are interested in Vega’s meds and to help you follow what I am going on about. After leaving hospital Vega was better than in a very long time. She looked bright and happy, was walking unaided, even if a little wobbly. The weather has been amazing and we had picnics in the park and mingled with children and adults, even eating strawberries (a no no when you are neutropenic!). On sunday we went to see Shrek the musical in London and Vega and Lyra both loved it.

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for a week we really left our cancer shadow behind. Monday was Marsden day and the start of escalating capizzi. This is an 8 week chemo block during which Vega will receive escalating doses of IV (intravenous into her port) methotrexate. Every ten days the dose will be increased until full toxicity is achieved. It really is as nasty as it sounds because full toxicity is measured by the severity of mucositis (mouth ulcers) and of course neutropenia. This means that we literally have to go on for as long as we need to, to absolutely wreck Vega’s mouth. If she presents with mucositis before the next dose, they will decide if she can take more, in which case they will increase, or if she can not, the dose will be the same as the previous one, or if she is really poorly the dose will be completely withheld. She will also receive intrathecal (injected straight into the spinal fluid via lumbar puncture) methotrexate, vincristine and peg-asparaginase. On our Marsden day on monday she had a full general anaesthetic to administer the intrathecal chemo and while she was under she also had the peg, which was great because this is given by injection into the thigh and really does hurt. If you are a frequent visitor to the blog you will remember that the peg is our little time bomb, due to its accumulative effect and the ever rising worry of an allergic reaction, but once again Vega dodged the bullet and all was fine on monday. only three more of these until the end of treatment! She also had the first dose of iv methotrexate, the mouth wrecker. We shall know in about a week how well she tolerated this initial dose, but I have been told it is rare to develop ulcers after the first dose. The next dose is due next week thursday and, beside a blood test on tuesday, we are free to enjoy our life without any further hospital visits. We also had to nip into Kings yesterday for a shot of vincristine and I think we beat our previous record and were out in under an hour. I am anxious about this escalating business. I felt bad just a few weeks back when Vega had one sore in her mouth. I think as someone who has never had to endure something like chemotherapy, it is very hard to understand how Vega might be feeling. the most violent things are happening inside of Vega’s body and are not that noticeable until they reach escalation, like her blood being destroyed or the nerve ends in her feet suffering so much she can’t walk. but mouth ulcers and sores- everyone has had one of them. I know how that feels. I can relate. and it is sore. and although the chemo is causing such havoc in her body it is -thankfully- not that often painful for her. sick, ill feeling, yes but not painful. And just like any other parent I don’t want to see my Vega suffer. I also don’t want her to die from cancer and so it seems we yet again have no choice and are faced with a cure that is as nasty as the disease. It was disturbing to watch Vega on monday at the Marsden as I could literally see her deteriorate in front of my eyes. After her intrathecal chemo and general anaesthetic she looked woozy and pale and her eyes are sunken because of the nil by mouth. She started to vomit pretty much right after we left the hospital and it seems like the iv methotrexate really is hitting her nausea button because she has been feeling sickly since, even with her anti emetics. She hasn’t eaten at all today until dinner, when she suddenly seemed to have an appetite. Most children do end up with a nasal gastric tube during this block, due to the sore mouth and the nausea, but I do hope that is one bead we won’t be adding to our beads of courage string. Feeling so helpless and out of control with the regime, I have begun to seek some alternative therapies to help Vega cope with some of the side effects. I am not looking for an alternative cure- for that I am not brave enough, I could not risk Vega’s life by attempting to cure leukemia with more unconventional treatments, but we have now been with our homeopath for a few years and it only seemed sensible to address what we could through homeopathy. Vega is literally being washed out with poison and I thought if I could just reduce the need for any extra medication, like anti emetics, or chest x rays every time she has a cough, or her sore bum.. Anything really that in my eyes could be taken care of without any more medication or invasive investigations. We have been very successful in getting rid of a cough, that landed us in the x ray department every time we were at the Marsden, with homeopathy and also to help her cope with the many general anaesthetics. Mucositis is next on my list and I also read that washing out your mouth with manuka honey is very soothing and prevents infection worsening. Vega has proven to be incredibly resilient- not necessarily in her body, but in her spirit- and I am once again taking her as my lead and I shall not worry until there is a time to worry. I fantasise about the future, when all of this is over, when Vega is well. It seems as if we are living in a twilight zone at the moment, neutropenia and sickness forcing us to stay at home. Vega spends a lot of time in bed, playing Lego or Playmobil by herself, always with the tv on in the background, although she is not really watching. I think it is the noise that makes her feel less lonely. Hospital days are our days out, school pick ups are exciting because we see friends and play. We still can’t do playgroups and even the sun is not your friend when you are on chemo so the park is not always an option. We do a lot of grocery shopping, spending time walking to the shops. I am so sad for her, this is really not how a three year old should be. I often think if I should do more, take her places but it is now undeniable that Vega is ill, the chemo is making her ill, and I can’t just whisk her off to the horniman for some arts and craft. She is too tired for outings. I know it won’t go on forever but it still seems like such a loss of this time in her life. I know I know, I am sounding all depressed and sad again. I started writing this blog post earlier today, in the daylight and then the children just didn’t let me finish it so here I am again writing in the dark and that always seems to get my melancholy streak going. I better go and read a book or have some chocolate or even better go to sleep. (Ps: I am sorry about the crappy photos… We were so busy having fun we completely forgot we had our camera with us!!)

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6 thoughts on “Escalating Capizzi=Escalating Anxiety?

  1. What a tremendously strong spirit Vega has. I cannot imagine how protective you must feel as her mother… and as well, how hard it must be to find time for Lyra and Alys, yourself and Ray. You are doing amazingly. The fact that you have the energy to write this at the end of an emotionally and physically draining day is big in itself. But I should imagine, from the way in which it is written, that you enjoy the process of putting everything into words. Beautiful xx

  2. Hello there sweetness!! Oh god another onslaught and doesn’t it just keep getting harder!

    i was reading down about the mucisitis (had that and it is bloody awful – like swallowing razor blades) and was thinking about how i loathed all the mouth washes they gave me and so gave up on them as they just made it worse, but sweet things were tolerable. i absolutely lived on warm ribena as it felt soothing and just said sod the sugar – manuka honey sounds good. i know too it screws with taste buds, and many friends who had gone thru pregnancy said i described my hyper sensitivity to smells, taste, sensations etc as similar to those they had when pregnant (if that helps to give you an idea beyond a mouth ulcer) – so you might want to experiment with different tastes and textures to see what Vega either likes or can tolerate.

    I was also thinking about her being in her room and the anguish of wanting her to go out – i know so many people wanted to take me out and i just didn’t want to go – but i loved having changing images and things around me. One friend sent me a little crystal angel and i used to watch it catch the light – others sent photos etc and i would gaze on them and change them around (vega’s beads are there now and definitely will be permanent!!). I’m sure Vega has a room full of wonderful things, but I found just adding or changing one thing in my environment made it feel different for a day or so. I made myself a little place in my conservatory where i could look out at the birdfeeder when i felt well enough to sit there. Anyway what i am say is that maybe there are little, simple things you can do at home to bring the outside in – in a way that Vega enjoys. I know that when i was at my most exhausted that all i could do was lay and look – but my eyes liked taking things in. Maybe she likes touching, listening etc on any particular day. you get my drift – but also maybe that may help you too to feel there is something that adds just a little ray of light that day.

    escalating capizzi – where do they come up with these names?? – what a bloody challenge!! sometimes i find that i just want medical terms to go away – they seem either overwhelming or irrelevant to life that day – you are such an amazing mum Kathi, taking your lead from Vega, yet holding such painful feelings. I keep having an image of an escalator – taking you up a floor at a time – letting you stop when needed but going upwards towards better things. I know this is just me, as images always help me hang onto some deeper reality in me when the outside is just too much. but maybe you can find some image/expression etc to hold onto that will just help to get thru that day. I always smile at Vega’s description of her ‘wiggly’ – so poignant and yet so wonderfully simple – i called mine my giant inner squid! So what would be your names for all these shite bloody regimes?

    Like all of your friends i wish i could do more, take it all away – but i know i cant, so can only say again that you are always in my heart and thoughts and sending hugs, and deepest love for you daily. There will be a time when there are no more treatments of such ravaging intensity and the journey not so so hard.

    lots of love sue xxxxxxxxxxxxxxxxxxxxxxx

  3. Love the picture from Shrek and glad you all had some fun if for a little while. Hoping for lots more fun for you guys in the near future … lord knows, you deserve it. Sending massive hugs.

  4. Hi, I got this blog while searching for Capizzi escalating protocol.

    My 3 year Old son has been diagnosed with PRE B ALL and though his MRD is negative he is in categorized in high risk as his WBC counts were above 50K at presentation.

    He has just started on Interim Maintenance with Capizzi escalating protocol. He got his intrathecal methotrexate today and tomorrow will get his VCR and first dose of methotrexate IV. It will also escalate every 10 days for 4 weeks.

    Please advice me how can I save him from Mucositis & Neutropenia?

    Thanks
    Pritish

    • Hello Pritish,
      I am very sorry to hear your family is going through this too. I can’t give any advice, may it be medical or else. I am just writing this blog as a diary to our journey through this mess, everything you read is about us and my daughter Vega, and it does not mean your experience will be the same. Please speak to your health team and tell them about your concerns. They are in the best position to advice. I hope your son will be feeling better soon, Capizzi was one of our better blocks, despite the Mucositis.
      Kathi

      • Thanks Kathi. I wish this New Year brings joy to your family and I pray that Vega gets fully recovered from this illness this year.

        With Love
        Pritish

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