Long term maintenance here we come!!!

I am feeling ecstatic! We are done with delayed intensification, Vega just had her last dose of chemo for this block. Massive, huge tick. We are now officially done with the intensive part of Vega’s treatment. The high dose chemos to wipe out Vega’s cancerous white blood cells over and over again, doing the worst they could, are now a thing of the past. This next part of treatment will hopefully maintain her remission and after doing it for long enough (22months) her body will be doing it by itself.
Long term maintenance is still very much active chemotherapy. I have promised to dedicate a blog post to fill you in on the schedule, but for now I just want to bask in the the feeling of relief and happiness.

Eight months ago Vega was diagnosed. Just over a month after that we were told she hadn’t responded to the treatment as well as hoped and was put on the highest risk treatment protocol. Now seven months after beginning high risk regime C we are done. Maintenance is the same for all children with acute lymphoblastic leukaemia. Vega did it and I know she will do this next part too. Her hair will come back and the hospital days will be fewer.

Today Vega is also very happy. She has been for the last few days. Even at three years old she understands the significance of finishing these blocks, not just because she is now allowed to go to nursery. Going to nursery is a big step for any child of her age, cancer or not, but for Vega in particular it means so much more. It marks an end of her isolation, marks an end of “being ill” and being different. She told me yesterday that she is fed up with her baldy head and that it is now time to let her hair grow again- as if she had chosen to have no hair for the last 8 months! Well she will have her wish. And I am so close in seeing my daydream come true, my blog post from months ago, seeing Vega in her uniform, with short hair, running and full of life being just a little girl.
More than ever I am feeling that all this will be alright one day. I will have to remind myself of this feeling many times over the next two years but just like I know Vega can do it, so can I.

Vega’s bloods from yesterday’s test were not too bad. Her neutrophils were above 1 which is why we have the thumbs up for school. Her platelets were low at 58- we expected that because she is pretty bruised up, but we took bloods again to see if they are going up or down and then we can make a decision about transfusing her or not.

Ray rode the London to Brighton bike ride on Sunday and because 54 miles didn’t seem quite far enough her also rode back to London. His distance measure thingy clocked in at 118 miles by the time he got back home in the evening. He posted on Facebook that he is man enough to admit that he shed a few tears on a tough climb thinking of Vega and her uphill struggle. I like that. He raised around £550 pounds for the Marsden Cancer Charity- thank you all for donating so generously! His fundraising page will remain active for another three months so feel free to add to the total if you wish. He is now making plans for some more impressive (and in my eyes painful) rides, maybe once Vega goes off treatment in 2014.

We are celebrating today, our little step towards recovery, keeping our fingers crossed that maintenance will be kind to Vega and the hospital stays will be few.

High five!!!

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10 thoughts on “Long term maintenance here we come!!!

  1. Amazing news – that’s made my day! Must be time for another tea party soon! There’s some celebrating to be done! Can’t wait to see her in her school uniform! ;o)

  2. Am following you every step of the way; hoping, wishing and celebrating with you all. Such good news on an ordinary Tuesday in September! As Van Morrison would say: “And the healing has begun…”

  3. This is such great news!! well done Vega, you are such a strong wonderful little person!!!
    I am pleased to hear that you can go to the nursery, you will love it!! and your classmates are so lucky to have you around!! High five for Vega indeed!!

  4. doing a celebration dance!!!!!!!!!!!!!!!!! way to go – big tick and hugs to you all – rest well and let maintenance begin! bring on the curls!!!!!!

    love to you all xxxxx

  5. Yay! Here’s to a happy healthy maintenance period. I’m sure it’s been one heck of a journey for you all to get here!
    My little guy has recently begun Escalating Capizzi, going well so far…
    I hope Vega has a ball at nursery! x

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