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Hello chemo our old friend…

 

A year and nine months chemo free, we should be grateful…

Unfortunately Eleanor’s last scan has shown her new, smaller lesion is not going to stop growing without a little help… help in the way of another chemotherapy protocol.

Second line treatment (in the UK) for this type of brain tumour is a 52 week course of a chemotherapy drug called Vinblastine. This will be given every week for a year, or as close to 52 treatments as possible depending on how Eleanor tolerates the protocol.

The upside to this treatment in comparison to her last protocol is that this can be given over just a few minutes as an outpatient – no overnight stays for chemo or endless hours of fluid infusions, it is also much less emetic than the drugs from her previous protocol so we should see very little of the sickness we saw last time and hair loss should also be minimum.

However there are also numerous downsides to this protocol. The drug is count dependent meaning she requires a blood test no more than 48 hours before the chemo is due to be given, her blood results determine the dosage of the drug week on week. If she doesn’t tolerate the drug well and we see a number of dose reductions or treatment having to be postponed it could mean that this protocol takes longer than a year to complete. Every single week for a year means that her body has very little time to recover, ever. Chemotherapy takes 7-10 days to reach cell level so by the time she is reacting to the last dose she is being given another. This drug is notorious for rapidly dropping blood counts meaning that stays in hospital for infections and blood/platelet transfusions might become normality for us. We can only hope she tolerates this as well as she did her last protocol. Fingers and toes firmly crossed!

The next step is to have her port-a-cath refitted at the Royal Marsden hopefully sometime in mid-May. Watch this space!

We believe in Magic…

 

Today we said our final goodbyes to the beautiful, selfless and kind hearted Meg Bhari. A young girl who brought joy and happiness into the lives of hundreds of poorly children despite fighting her own brain tumour battle.

She set up the incredible charity ‘Believe in Magic’ when she was just 16 and organised out of this world trips, gifts and the amazing Cinderella ball which we attended in 2015, the year Eleanor was diagnosed. That event skyrocketed our social media campaign leading to real changes in the awareness of paediatric brain tumours.

She made things possible for our family that we would never have dreamed of, a shining light of love and hope in our darkest hours. We will be forever grateful.

 

Sweet dreams Meg, our Fairy Godmother.

x 💖 x