One step closer: Intrathecal topotecan approved, now need all the drugs to be approved!

Eloise has been approved for Intrathecal topotecan chemotherapy at the Royal Marsden in the UK (the chemotherapy drug to be directly administered into her brain and spinal fluid via a lumber puncture).  Thank you to those of you that prayed! 

We are so grateful for getting over this huge hurdle.  Our oncologist is now putting Eloise forward to the Drugs and Therapeutics Committee to approve the combination of drugs that are being recommended by the ETMR expert – the intrathecal topotecan with the two other agents.  Unfortunately, we won’t find out about whether the additional drugs will be approved until mid-July (16th July at earliest).  Eloise will need to start treatment pretty soon afterwards.

We are therefore narrowing down our back-up options and suspect we will head to Spain (Barcelona), at the very last minute, for the Topotecan with additional agents – if they aren’t approved in the UK.  We are grateful that this has come together and is a viable back-up option. We are exceptionally grateful to oncologists across the world for all their help – people have genuinely done their best to help her.  What a privilege and blessing.

That said, we would REALLY like Eloise to be able to get the full maintenance chemotherapy treatment in the UK.  Having it in the UK would obviously be much more beneficial from a financial, logistical and family perspective.  So we would really value prayers that the Drugs and Therapeutics Committee agree to this….  We keep holding on in hope.

Eloise finishes Proton tomorrow!!!! What a marker in the sand.  We will post a video of her ‘ringing the bell’ to mark the end of the proton treatment (she will never have proton again).  Anna is very excited to also witness the ringing of the bell!

For those that pray:

  • Give thanks that Eloise is doing so well!  She has tolerated proton beam therapy brilliantly, and is getting stronger.  Today she loved trying out her new scooter with Anna (they both had scooters for their birthday), after her GA/treatment.  What a hero.
  • Please pray for continued protection against relapse.  We were today told of another ETMR patient that relapsed as soon as proton ended…  We know Eloise is far, far from being out of the woods.  Please keep praying her through the next 2 years which are so, so risky.
  • Please pray that the combination of drugs is accepted in the UK.  As so little can be done if Eloise relapses and the chances of relapse remains so high, we feel we only have ‘one-shot’ and want to give Eloise the absolute best chance that is available based on the available evidence. 
  • Give thanks for the love and support we have had through this journey.  It’s been an awful rollercoaster for 8 months – but we have been blessed throughout, by God, by friends and family, and by many others we hardly know.  It’s carried us all.

10 thoughts on “One step closer: Intrathecal topotecan approved, now need all the drugs to be approved!

  1. That’s great. The people at the Marsden really are incredible. Fingers crossed all the other drugs come through, hopefully can be cautiously optimistic. One more day Eloise – keep going you utter hero (heroes!)

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  2. Brilliant, really encouraging news! Praying Eloise grows stronger both mentally and physically by the day and that the Lord continues to bless you with answered prayers.
    I shall keep praying for as long as needed.
    Eloise is such a little star and an inspiration for young and old!
    God bless you all xx

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  3. Your news today is so encouraging. Praise God. We will continue to pray for you all. Your courage as a family is very humbling. Love from the Intercessory group at Redeemer Church Chester-le-street.

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  4. Please give Eloise a big hug from us for reaching the end of this stage of treatment so bravely. We continue to remember you all in our prayers.

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  5. Praying that all the pieces of the jigsaw will come together sooner rather than later. Totally in awe of your courage and stoicism

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