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.

8 thoughts on “First day at nursery and an update on next steps

  1. Amazing beautiful and wonderful – all of you. Thank you for these updates and you all stay in our prayer. X Susan

    Dr. Susan Yarnall Monks Vocal tutor & Associate Lecturer University of Chichester singunique.com President European Voice Teachers Association 2017-2021 evta-online.eu 07884 425842 Licensed Reader Anglican Church

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  2. Wonderful new beginnings for Eloise and you all as a family.thrilled for you all.Beautiful sister pictures of your girls at wedding .Love the visual of beads..Will pass on to healing rooms Bristol they will be as thrilled as I am. Prayers Joy. Love and blessings. God bless you all on way ahead .Believing God hasn’t finished with you all.He is a God of miracles.so looking forward to more good news and reports of further breakthrough.

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  3. It’s hard to text the tears want to flow but lm so delighted with Eloise progress .. l will continue to pray and feel so moved that Hod is with her and has brought her this far …. I Will of course keep praying please give Eloise a big gentle hug from me … l pray that Jesus will continue the process of healing that will be a great Testimony … May God Bless and Keep you may be make His face to shine upon you and give You His Peace ♥️♥️♥️♥️♥️♥️♥️Keep hanging on to the gem of His garment until it passes .my heart goes out to you all Much Love Sue XXX 🙏🏻❤️😘

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  4. How good God is to have protected Eloise this far, and we pray that each time treatment progresses to a full recovery God will show his great love to this amazing family

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  5. Amazing photos and a wondeful update. Lets hope she still has the same desire to go to school when she is grumpy 14 year old teenager! 🙂 🙂 what a inspiration she is

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  6. The beads of courage are an amazing visual reminder of what a journey Eloise (and you three as well) have been on. I feel very emotional seeing them, while cuddling my own son on my lap. What a lovely photo of Anna and Eloise together as well.

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