First day at nursery and an update on next steps

Today Eloise had her first (well 1 hour session) at nursery school!  A big milestone for any child, but for her, this feels enormous.  To have survived and to have been able to attend a nursery is incredible.

We are forever indebted to the fantastic Rydes Hill Preparatory School and Nursery for everything they have done to enable Eloise to join.  It is overwhelming how much work has had to go in, in order for Eloise to join – including (but not limited to) training from Community Nurses, Epilepsy nurses, adjustments and visits from Occupational Therapists, Physios and Speech and Language therapists.  Rydes Hill have been kind, generous and have done everything they can in order for Eloise to be able to attend and be able to participate.  Eloise is only going for 1-1.5 hours, three days a week, so it’s very short as she gets very tired – but it’s the first step in her moving towards a more normal life as a 3 year old.  Eloise today walked in confidently and appeared to enjoy it (a visit from the school dog was a clear hit) and as soon as she got in the car to come home she asked to go to nursery again.  So, so far so good!

Here is Eloise today.

How do we feel?

Honestly, I thought today might have been more emotional – but it surprisingly wasn’t.  Perhaps we’ve actually just had so many ‘big’ days in Eloise’s life that we’ve got used to ‘big days’.  Or perhaps it will just catch up with us when we have settled in and start having a bit of time to think….  We might still just be living on adrenaline as we have done for the last two years (it was exactly two years ago that we first went to the Out of Hours suspecting Eloise might be having seizures).

Children with cancer often get given a special bead for each procedure they have during their treatment.  Here are Eloise’s beads of courage. These beads are from the end of January last year – August this year.  Over 1,000 beads representing procedures Eloise has had to endure and be courageous for.  From surgeries, proton beam sessions, intensive care admissions, chemo, IV infusions, stem cell collection, stem cell transplant, anaesthetics, MRIs, CT scans, EEG’s, blood tests, blood transfusions, community nurse visits, NG tube placements, dressing changes, nights in hospital etc. etc. 

These are a visual reminder of what Eloise has had to go through in order to survive to this point and get to nursery….  And we will hang these up in her room to remind her that she is a warrior – and if she ever feels like she can’t do something, we will use these to remind her of all that she has already accomplished.

What next for Eloise?

The next few weeks and months will be a process of weaning Eloise off the final chemo protocol drug (which will take approximately 6 months).  In addition, Eloise will have lots of tests to get a better picture of any side effects of the tumour/hydrocephalus/treatment – for example this Friday she has an audiology test in London (after her hour at nursery).  Other tests include kidney functioning tests, and endocrinology tests. Unfortunately, children with paediatric brain cancer have lifelong after-effects from their cancer and sadly, its treatment (but we pray for a miracle that these will be very minimal for Eloise).

Eloise continues to have her port in place – but she now only has to have bloods taken by the community nurses every other week!  In a few weeks’ time, once Eloise has completed more of her tests, we will meet with the oncologist to discuss her having minor surgery to remove her port.  Eloise will continue to have her shunt in place life-long.

So the majority of the next few weeks is focused on settling Eloise into nursery, weaning her off one of the chemo drugs, attending tests/appointments and ‘rehab’ i.e. trying to help Eloise get stronger.  It’s going to be a very long process (and we need to remind ourselves of this, when we are feeling impatient and just wish everything was ‘normal’) but we hope and pray that each day Eloise loves life a bit more, develops and thrives.

For those that pray:
There’s a lot to be thankful for:

• Give thanks that Eloise was able to start nursery today.  Give thanks for all those involved to enable this to happen – for their dedication, care and support for Eloise.
  Give thanks for the NHS and all the medical staff that have been involved in each of those 1,000 bead procedures. 
• Give thanks that Eloise has had pioneering treatment and her last scan showed there to be No Evidence of Disease.
• Pray that Eloise gets physically stronger – in particular, for her tremor to reduce.
• Pray for limited side effects of her tumour/treatment – pray for her brain, for her eyes, for her ears etc.  Pray for her development – that nursery and a slightly more ‘normal life’ will enable her to develop.
• Pray that her body heals much faster than expected from all that’s been thrown at it.
• Pray that she remains cancer free (particularly as we’ve stopped treatment).

Also a little highlight from the past two weeks, Eloise and Anna being flower girls at Mel’s cousins Wedding. What a special day.