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!