Eloise is going from strength to strength. We are so proud of her! She has definitely found the proton beam treatment the most tolerable of her treatment so far, as we somewhat expected, but we know that its also the most likely to have long term side effects – so please, please continue to pray against this! We desperately want her wonderfully smart little brain to be protected.
We were reunited again at the weekend which was wonderful! We were also able to meet up with family and friends in Manchester, which was so special. The weather has been kind which has really helped and much of the time Eloise has been walking around and playing outside in parks. Anna and Mel are now back in Guildford so Anna can to go to school.
The right open door needs to open….
Much of the rest of the time, we (Pete and Mel), have been working on the plans for Eloise’s next phase of treatment after proton beam therapy (12-18 months of maintenance treatment). As we said in our previous blog, there are 2 main recommended treatment options for Eloise going forward, otherwise it is surveillance (just watching and scanning to see if there is any re-growth or metastasis…). As it currently stands, neither of the 2 treatment options are available for Eloise in the UK so we are pursuing options for treatment abroad.
It is vaguely possible that one of these options (Option 1) might be possible in the UK and under the NHS, but at the moment this isn’t clear/hasn’t been approved. There are quite a few challenges to overcome for this to come about (both the drug, and the way to administer it, would both need special approval…!). Please pray, that if Option 1 is the right treatment – that the door is opened and Eloise can access it. If it’s not (and the EMTR research is so sparse, its impossible to know which is the best treatment), please pray that we can get the alternative treatment (we will call it Option 2) privately overseas and that the logistics can come together….
It is so hard to have a child with such a rare disease that so little is known about, and one that the NHS isn’t used to treating it/hasn’t yet successfully treated it before – the only UK survivors we know of both had to go abroad privately for treatment. But we are so grateful Eloise has got this far, has had a gross total resection and is having proton beam treatment so quickly – which we know is crucial in order to give her a chance. And we are incredibly grateful for the most amazing oncologist who is doing everything she can to give Eloise the greatest chance of survival.
Please, please pray for the right door to be opened – and for the route ahead to be made clear (perhaps all the other options shut, so the right door is the only door available?!) . We are doing all we can to research, pray and push doors and now we need the right thing to come about. Eloise finishes Proton 2 weeks today and she would need to start this treatment 2-6 weeks after! The clock is ticking fast…
How do we feel?
- A little more rejuvenated having had some time all together.
- It’s very odd having a child with such a rare cancer, where as parents you become semi-experts and have to pursue treatment options. It seems quite different to having a disease where there are clear treatment protocols…. It is intellectually stimulating, but also quite pressurised as we aren’t medical professionals but desperately want to get the best treatment for our daughter (as any parent would).
- I (Mel) read this blog the other day. Whilst written for an American audience (e.g. we don’t have little red wagons in the UK hospitals) I found it brilliantly articulated some of what it has been like over these past few months. There’s so much more we could say and for us to process, but for now we are hanging on in there – praying for our little Eloise to be a miracle. God has brought her this far and we hold onto Him.
- Chuffed and appreciative of a lovely five-year old girl Lucy, in Anna’s class, who had her beautiful hair cut last week to donate to the Little Princess Trust (wigs for children and young people) and to raise money for Solving Kids Cancer who are doing some research into ETMR’s (one of only a couple of places that are doing some very limited research). We are overwhelmed by Lucy’s kindness and generosity. Thank you Lucy!
For those that pray:
- Give thanks that Eloise is doing so well. We know that many ETMR patients would have already relapsed over the past few months since surgery. Praise God that Eloise is managing to dodge some pretty-high odds and so far seems to be navigating a very narrow path and doing brilliantly!
- Please pray for the right open door for Eloise’s maintenance treatment. Pray for the right treatment to be clear, and the right doors to be flung open wide!
- Please pray for continued protection from the daily proton beam treatment on Eloise’s brain and for protection against seizures.
- Please pray for Anna. She is clearly missing Eloise dreadfully and most days (when she’s not seeing her) just laments that she wants Eloise to come home. During these challenging months, it feels a double-edged sword having sisters that are so close to each other. Pray that Anna feels loved, secure and copes being away from Eloise (and Pete/Mel) so much.