Plates are spinning – UK (various locations), Spain, Canada and the USA are all on the cards. We need an option to land…..and fast!

If you’ve been following the blog over the past few weeks, you will know we have been working on Eloise’s future maintenance chemotherapy – at the recommendation of the ETMR experts.  Without going into all the ins-and-outs of some very complicated options/scenarios, we would be really grateful if people could pray.

At the moment we have several plates spinning:

  • Our oncologist is continuing to try to explore options for Eloise to have Option 1 (intrathecal topotecan) in the UK.  This is our preference. There are risks involved, especially as Eloise has a shunt, but it is the main recommendation from a leading ETMR expert/researcher, based on the limited evidence so far.  But for this to happen, numerous challenges need to be overcome and the clock is ticking.  Please pray this option lands – and fast.  And if it’s not, then we would know quickly too, so decisions can be made about alternative options.
  • We are also exploring alternative options for Eloise to have intrathecal topotecan overseas.  At the moment we have been liaising with hospitals in Spain and Canada about options for treatment and whether practically Eloise can be taken as a patient. 
  • We are also continuing to take forward Eloise having an alternative treatment, Option 2 (DFMO) in the US.  This is part of a clinical trial.  The drug is possibly less invasive, but still has differing side effects (and some of the very few ETMR survivors have first had intrathecal topotecan before having DFMO).  We have applied for US visas so that this option is available to us – and because there is a very long time lag for visas – and are liaising with oncologists and the clinical trial leads to keep the process moving. 

Each one of these options is requiring quite a lot of admin…

Please pray that an option lands – and fast.  Doctors and hospitals around the world are being brilliantly helpful.  Solving Kids Cancer have been really helpful in supporting us with applying for US medical visas.  But we would REALLY prefer for one option to land quickly (this week?!), so we don’t waste people’s/medical staff’s time unnecessarily and would prefer not to also fork out expenses unnecessarily (visas, consultation costs etc).  Also, its all much more complicated because of Covid travel restrictions, and the thought of travelling to/from many of these countries for many (12-24) months for treatment is slightly overwhelming.

We are willing to do anything to get our daughter the best treatment (as any parent would), but would be grateful if you could pray for us to get answers this week, so things can start to come together….and for plates to stop spinning.    

Eloise is due to finish Proton beam therapy next week, and will need to start either treatment in the next 2-6 weeks (6 weeks max).  She continues to do really well with the daily general anaesethic and proton beam treatment – loving life, chatting away, playing hide and seek, climbing slides and stroking dogs (her current favourite pastime).  Her eyebrows and eyelashes have started to grow back after losing them from high-dose chemotherapy, so that is lovely to see too. What a hero! 

The gantry where Eloise has her Proton Beam Therapy each day. The gantry was down (ie needed fixing) for a day last week (it often happens), so Pete and Eloise were allowed in to see it. As she’s under GA Eloise is unaware she goes in this on her own everyday!

11 thoughts on “Plates are spinning – UK (various locations), Spain, Canada and the USA are all on the cards. We need an option to land…..and fast!

  1. Happy Birthday Anna and we continue to pray for wisdom and guidance, God’s speed for all the medical teams involved, such ground breaking work…miracles have happened.
    x
    Susan

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  2. Thank you for the updates. Was so nice to see how well Anna is doing.
    Continuing to pray that the best option for Eloise becomes obvious and available in next few days and for her to be completely healed. Well done you guys.

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  3. Praying that the treatment pathway is shown to you very quickly and is an easy path to follow , in Jesus name . Love Penny . X

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  4. Ongoing prayers for you Mel & Pete as you negotiate the treatment options ahead especially that you hear really soon about the paths that are open to you. Praying that Eloise will continue to cope well with the treatment. Would so love to bring our Millie to be a much stroked pooch. 💗💗

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  5. Cannot believe how wellEloise is doing , the power of prayer for sure, praying that a clear path is visible by the end of this week !!

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  6. So grateful that people around the world are sharing their expertise with you. When praying for you I’ve been thinking about when Moses prayed and the sea parted. Praying that our faithful Waymaker will go ahead of you and show you the path. Xxx

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  7. We are praying for you all, and thank you for this update so we can pray for something to be finalised very soon, and for all the overwhelming amounts of admin going into this. praying for Eloise’s ongoing protection during this treatment. Xxx

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  8. Continuing to pray for the LORD to open the doors He wants you to enter into re next step for Eloise. Our hearts & thoughts are with you as a family! xxx

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