Easter gratitude before another big week

This weekend Eloise really turned a corner – she’s walking and acting much more like a normal 21 month old! She’s smiling a bit more which is lovely too and has really enjoyed being with her big sister Anna and seeing a few family members in the garden.  We are so grateful for the sunshine and for community nurses visiting, meaning we could be at home over the weekend and did not need to step into a hospital!

We are unbelievably grateful to God that Eloise is walking again – thank you for praying!  Eloise has dodged so many of the possible side effects of surgery.  She’s weak, but getting stronger and considering she has had 3 surgeries in just over 2 weeks, she really is doing amazingly from everyone’s accounts.  Go Eloise! 

We are also really pleased to say that Eloise hasn’t had any of her previous type of seizures since surgery! We were hesitant to say this for a while, but it appears now that she’s not had any since surgery.  She might still be experiencing seizure activity and her anti-epilepsy meds might also be masking seizures – but when we step back it is amazing that she hasn’t had any of her previous type!  Quite a contrast to having between 10-30 a day!  Thank you Jesus.

Tomorrow Eloise will be admitted into the Marsden ahead of her stem cell collection on Tuesday.  Tuesday will involve a general anaesethic to insert the line for the stem cell collection.  Then Eloise will need to sit still for the day (which might be more tricky now that she’s suddenly back walking!) whilst her stem cells are collected.  If they don’t collect enough, Eloise will have more collected on Wednesday.

How do we feel?

• We feel utterly grateful that Eloise seems to have fallen on the ‘right side’ of statistics over the past few weeks – she’s dodged some pretty awful things with high chances, and is really doing amazingly well.  We feel that prayers are really making a difference. Thank you to all those that pray. We can’t thank you enough.

• We have two current over-riding concerns 1) Relapse and 2)  The side effects of high-dose chemo with stem cell rescue.

Relapse:  Eloise’s ETMR is very aggressive and despite treatment, she still has very small percentages of survival (figures between 10-20% survival rate are given).  Relapse is very likely, and we need the cancer to stay away particularly in this phase whilst waiting for high-dose chemo to start, and focal radiotherapy in due course (and afterwards of course…!).

Side effects of high-dose chemo with stem cell rescue:  Unfortunately this treatment comes with serious risks – including a high mortality risk (we will save you all the details of this here…), high chance of hearing loss and increased risks of serious infection. But we don’t have an option if Eloise is to still have a chance of beating this cancer.

For those the pray:

• Thanks for an enjoyable, sunny Easter weekend as a family
• Huge thanks for eradication/control of Eloise’s previous seizures and for Eloise’s continued recovery – including walking unaided.
• Protection against relapse and recurrence of the cancer and tumour
• Successful (and uneventful) extraction of stem cells on Tuesday
• Wisdom as a team of expert Oncologists discuss and agree the bespoke combination of chemotherapy drugs to give Eloise (which we will then need to sign off)
• Favour with Eloise’s proton beam treatment application

Also today, a talented friend released this song – we found it particularly appropriate for Eloise Zoe’s situation (and name) and Easter, so thought we would share it.

(Eloise riding her unicorn pen earlier today)