Days to remember and days to forget

Today is Vega’s ‘half birthday’. that means it is exactly half a year till she turns four and incidentally, since her birthday is on boxing day, it also means that it will be Christmas in six months already.

many of the other oncology blogging parents online and those at the Marsden are celebrating ‘half birthdays’. in the end the sad truth is that there is a possibility that these children will not see many more birthdays, or sometimes not even their next real birthday, so half birthdays are an attempt to fill a quota that can never be filled.

we are not celebrating Vega’s half birthday today. i find it slightly macabre and i also like to believe that Vega will happily celebrate her fourth birthday and many more to come. my optimism prevails.

although i am reading up on Vega’s treatments and drugs, i have so far tried to stay well clear of other onco parents’ blogs. but every so often i stumble upon a blog and i guess for the same reason that people slow down to check out a car crash i find myself reading it. now the thing about cancer parents and blogs is that many of those parents that had a child with cancer, had the treatment, survived it and walked away from it hoping to not think or talk about it very much any more.

most of the blogs online are written by parents whose children are still fighting cancer, some of them fighting a very tough battle, and of those children who have now “earned their angel wings”. i guess they are blogging for the same reason that i am doing it too, at least to some extend. losing a child, or the fear of losing a child leaves parents with a never ending void of utter devastating sadness and loss. i can not bare to think about it, hence my reluctance to read other parents blogs. hell i couldn’t even walk past a funeral home without starting to cry in the first few weeks after Vega’s diagnosis. i am now understanding more and more that death is really a part of life, but when a young life is lost, especially after having lived through such crappiness in the last few months or weeks of it, it is only sad and unfair beyond belief.

i find relief in writing about my fears and worries, but i also write because i feel Vega’s ability to deal with this, live through this is commendable and needs to be shared. her  incredible journey through all this, written down it becomes a testament to her strength. writing about children whose lives have been lost keeps them alive a little while longer, refreshes the memories of who they were and the journey they had to take for as long as we read on.

but today on Vega’s half birthday we are mainly thinking about the future. we just returned from her induction day for her new nursery starting in September. Vega is excited and more excited.

escalating capizzi seems to finally catch up with us, her mouth is now sore and she has two big open patches of mucositis, yet she very rarely complains about them and still eats a variety of textured foods. she is asking for “something soft” more often though and yesterdays lunch looked like this

she asked for a shake, so seizing the opportunity i whisked bananas, avocado, whole milk and some mega healthy but foul tasting wheat grass, spirulina and beetroot powder. a dollop of clotted cream ice cream for good measure and a pretty straw and 5 minutes later Vega had her lunch in a glass. she finished half of it- more than i could have hoped for. her chemo diet is kind of fun because it is essentially an ‘anti-diet’. the more fat (ok healthy fats), carbs and sugars (for energy) we can get into her the better. so out with the semi skimmed, in with the double cream.

she is tired, really tired. people at Lyra’s school comment everyday how well she looks, and she does. she is walking around the playground, limp-skipping around like a strange little horse. at home she spends all her time in bed. mostly watching tv, sometimes playing lego or stickering. she gets tired out so easily and is not happy to go out for shopping or visits to friends or even the park. she just wants to be in bed. i think she gets her share of social interaction during our twice daily school run and that drains her for the rest of the day.

but tiredness we can deal with. i allow her to rest and allow myself to accept my life as a social cripple. i have dreamt about becoming a poet, and since i am a clairvoyant of some kind i might just start writing about our hardships- haha!

here is now to all children who are fighting the big fight, the fight of and for their lives, and to their parents and families. please do check out the links for Be child cancer aware and for ClicSargent and consider donating.

And here is to the future- and many many many birthdays.

 

 

 

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13 thoughts on “Days to remember and days to forget

  1. well done you for such creative ‘lunch in a glass!!’ – love the straw.
    I am wordless at the sense of her tiny body coping with so much and in such admiration of her inner strength. What a true star she is!

    chemo tiredness is a category all of it’s own, so I am stunned that she manages to muster energy for the things she likes and hoppety ploppety around the playground. In her words ‘she may be small and you may be tall’ but in my eyes (and sure all of those who know you) you are giants in this journey of the unknown – and little mice in bed when rest is called for.

    sorry to her mouth is getting sorer – maybe you can create your own lovely mouthwash!

    i had a thought the other day of smoothie lollies – to suck, if you have little sticks to put in an ice tray filled with Kathi smoothies or a lolly mould? i know i went from wanting smooth, soft warm things, to cool, wet things to melt.

    hugs as always kathi and love to your gorgeous girls xxxxxxxxxx

  2. I’ve just stumbled across your blog from Googling cytarabine, just saying hi & thanks for sharing! Our little boy was diagnosed with ALL in mid-May and moved onto Regime C after a high MRD a couple of weeks ago. I try not to read stories on the internet but yours so far has struck so many similarities that I am going to continue reading! Best wishes to you & your family for the future x

    • Hi Laura,
      how nice to meet you- sorry we had to meet under these circumstances. where in the uk are you? hope your little boy is getting on ok, it never is nice is it? i am also sending all the best to you and your family!

      • We’re in Scotland, in Aberdeenshire. Ewan is doing great, I wish I had even just a fraction of his strength & courage! What a rollercoaster. I’ve managed to read through all your blog entries now, with several breaks to find tissues! It’s really struck a chord, you’ve managed to put perfectly into words everything we’re experiencing and feeling up here, so eloquently too. When I try and put down my thoughts etc. it ends up a total messed up ramble. Thanks so much for sharing and I’ll keep on following your story too, your girl is gorgeous! x

      • oh Laura, thank you. i feel flattered. most of the time i feel as if i only produce a messed up ramble too, and i very rarely read past entries.. i think i would be tempted to edit. but it feels good to get it out and write it down and i am hoping that in the future it will remind me about how i felt and how we actually got through this. so messed up ramble is very much part of that i think.
        i am glad to hear your son is doing great, it would be lovely to hear from you from time to time, and how you and Ewan are doing. here is to our amazing children!

      • I also stumble upon your web site trailing through Google search engine and was also hooked on reading the full journal about your brave little daughter’s progress.
        Unbelievably like Laura from Scotland, we also live in Aberdeen Scotland and unfortunately my son Fraser (6) is currently going through treatment for A.L.L. (started treatment 9th May 2013) and also was increased from Regimen A to Regime C after MRD Risk was confirmed after Induction phase. We are currently half way through Consolidation and are waiting for his neutrophils to rise from 0.1 to 0.75 before we can proceed with his second cycle of Cyclophosphamide/6-MP/Cytarabine which you will all be well aware of. My wife and I cannot believe how well our son has adapted to the tough treatment regime so far and how he has taken it all in his stride, kids are amazingly resilient – I can totally relate to the rollercoaster ride statement that is used to describe the process.
        It is a year ago since Laura from Aberdeenshire replied and I hope her son Ewan is also doing well, I presume they, like us have had treatment at Aberdeen’s Royal Children’s Hospital where the expertise and care for treating A.L.L. is second to none. We are so lucky to have this hospital only 5 minute drive from our house.

        Best wishes to you all for the future.

    • I also stumble upon your web site trolling through Google search engine and was also hooked on reading the full journal about your brave little daughter’s progress.
      Unbelievably like Laura, we also live in Aberdeen Scotland and unfortunately my son Fraser (6) is currently going through treatment for A.L.L. (started treatment 9th May 2013) and also was increased from Regimen A to Regime C after MRD Risk was confirmed after Induction phase. We are currently half way through Consolidation and are waiting for his neutrophils to rise from 0.1 to 0.75 before we can proceed with his second cycle of Cyclophosphamide/6-MP/Cytarabine which you will all be well aware of. My wife and I cannot believe how well our son has adapted to the tough treatment regime so far and how he has taken it all in his stride, kids are amazingly resilient – I can totally relate to the rollercoaster ride statement that is used to describe the process.
      It is a year ago since Laura from Aberdeenshire replied and I hope her son Ewan is also doing well, I presume they, like us have had treatment at Aberdeen’s Royal Children’s Hospital where the expertise and care for treating A.L.L. is second to none. We are so lucky to have this hospital only 5 minute drive from our house.

      Best wishes to you all for the future.

      • Grant,
        what can I say? I am sorry you had to join this sad club. we have all found ourselves here without ever wanting to join. I am glad to hear your son is doing ok, consolidation had Vega’s neutrophils wiped for ages. although most of my recent blog posts are rather gloomy, it does get better and easier. not normal but some kind of new normal anyway. I haven’t heard from Laura, I think of her often, I guess her son should have started Maintenance by now. I hope you do meet in the future.
        I am sending “go up” vibes to your son, and some empathetic vibes to you, parent to parent.

        Kathi

  3. Hello! I am still here & still avidly following your blog. Ewan is indeed on maintenance now and by all accounts is doing really well after a rough ride in the final quarter of last year and a few complications in our 1st maintenance cycle. He still does not eat having spent 7 months being solely NG tube fed during his intensive treatment. We have managed to get him to accept the hospital nutritional supplements orally now so the NG is no more & I love in hope that one day he will decide food is good once more! As this appears to be our only long term effect of the aggressive treatment, I consider us to be extremely lucky in that respect.
    Grant, what a coincidence! I’m sorry you are having to go through this. We are exactly a year ahead of you in the treatment & i can remember only too well those 1st few months. It doesn’t seem it at the time, but the time does fly in.
    Perhaps we will bump into each other at clinic one of these days! I will keep an eye out. Feel free to get in touch if i can be of any help/support.
    Best wishes to everyone,
    Laura.

    • Thanks Laura,
      Our paths may have already passed at the hospital and we just don’t know it – one of the many downfalls of neutropenia I guess, people tend to keep to themselves within there ward rooms and trips to the play area is prohibited of course!
      Its good to hear things are now going ok with Ewans progress, if you don’t mind me asking – how old is your son? My son has tollerated almost everything they have thrown at him so far but I think he would not be very impressed with the NG tube fitted, I think the thought of this will keep him eating for as long as he can. Its ironic realy as he gets pumped with all sorts of dangerous substances and the only thing he moans about is taking the Co-Trimoxazole (crushed antibiotic tablet) he has to take two days a week.

      Also thanks Kathi,
      Im very aware that we are still in the early stages and there is a long road ahead, I have read through your daughter Vega’s long and bumpy road, and I find her courage gives me hope with my sons battle, Im aware that everyones journey is different but reading this amazing blog seems to give me some sort of comfort (not realy sure how to explane) I guess it shows me that there are other parents going through this journey and have come through the intense months all be it with good and bad days.

      Thanks all again.

      • Ewan was 2 1/2 when he finally needed the NG, 4 months into his diagnosis. It was probably his age that made him more accepting of it. Hopefully your son will manage to avoid it with being at an age where he can actually understand the importance of keeping eating, it’s difficult/impossible to convince a 2 year old to eat when they don’t want to! Feel free to drop me a line if you have anything else you want to ask, my email is laurastewart1007@yahoo.co.uk
        All the best to your families.

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