Maintenance Cycle #2 (of 12)

Tomorrow morning (Wednesday) Eloise will have her second intrathecal topotecan chemo – the start of her 2nd 28 day cycle. It was brought forward by a day so we are now going in tomorrow. We would value prayers for this – prayers against any big and small side effects of the chemo. Last time we ended up in hospital staying longer than the expected 1 night (we stayed 3 nights) as Eloise spiked a temperature after a few hours after the lumbar puncture.

Tomorrows intrathecal chemotherapy also coincides with Anna’s first day in Year 1, so unfortunately Mel and Eloise won’t be at home when Anna goes and returns from school. We are hoping, all being well, that we will be home on Thursday though.

Unfortunately we also ended up having a night in the Royal Surrey last weekend as Eloise had been quite poorly for a while and needed fluids. She seems to be doing a bit better now and we were grateful for Eloise being allowed out to enjoy some of the weekend, including the village dog show (she continues to be dog and cat mad!). Eloise continues to be very tired, but she consistently always gives 100% and tries to participate in everything – even if she then lies down and collapses on the floor during it.

Eloise has also had a few more appointments over the past week, which have generally been encouraging:

• Eloise had an ophthalmology appointment at St George’s and so far, although Eloise always tilts her head down and her eyes are always looking up, this appears to be from exhaustion rather than from any neuro or optical issues with her eyes. We were told previously to expect issues with her eyes post surgery, but so far, it appears Eloise’s sight and eye alignment is ok. This is a big relief.
• Eloise also had a really helpful appointment with the OT (occupational therapist) and it was encouraging as Eloise is clearly getting steadier on her feet and physically stronger. She continues to have visual and light sensitivity issues, but we are finding it so helpful to have someone advise and support us in helping Eloise to manage these. Her appetite is still quite low.

How do we feel?

Slightly chaotic – lots of appointments have changed this week and with the unexpected admissions too, it’s been quite a juggling act. Plus Pete has returned to work. But we are doing ok!

Grateful for the outcome of the ophthalmology appointment. Grateful that her first cycle of chemo has been relatively ok.

This week actually marks a year since we first spoke to our GP and went to the Out of Hours service, having had our wonderful childminder and others notice that Eloise might be having seizures. What a rollercoaster of a year.

For those that pray:

Please pray for the intrathecal chemotherapy tomorrow. Pray that Eloise tolerates being nil by mouth, that the procedure is smooth and that there are no big side effects. Pray for protection against seizures, infection, temperature spikes and numerous other chemo side effects. Pray that Eloise is able to come home on Thursday.

Pray for Anna as she starts a new school year (her first reception year being so disrupted). Pray for her as she starts the year, whilst also dealing with Eloise and Mel being in hospital again. She’s looking forward to it and we are so proud of how increasingly courageous, responsible and caring she is.

Give thanks that Eloise seems overall to be doing well – that her last scan was NED, she doesn’t appear to be having seizures (she’s still on very strong anti seizure meds, and will be for many years), that her sight seems to be ok and that she’s getting stronger on her feet. Pray that this all continues and that her energy and appetite improve.