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.

Celebrating the end of treatment and a positive MRI result

Yesterday was a momentous day. We found out that Eloise’s latest MRI scan was all clear and Eloise got to ring the bell at the Royal Marsden to signal the end of all her active cancer treatment. Quite simply, this is a stunning statement and wonderful news. We are so grateful and indebted to so many.

Statistically and when we first met with the Oncologists it was unlikely that Eloise would get to celebrate another Christmas. 18 months on and after countless miracles, including successful highly complex brain surgery, access to cutting-edge radiotherapy and pioneering chemotherapy protocols Eloise is doing well and there is no evidence of cancer in her. Incredible.

Whilst Eloise continues to have medical challenges to conquer, today is a day to celebrate. A day to be thankful to God. A day to celebrate Eloise and all she has overcome.

Thank you for all your prayers, love and support. We wouldn’t be where we are without it, we are convinced of that and are forever grateful.

We will provide further updates about “what next” in due course but for now, we hope you enjoy watching Eloise ringing the bell to mark the end of her treatment.

(Note:  The Royal Marsden doesn’t allow family into the hospital, so Eloise rang the bell twice. Once on the ward with some of the nurses, dieticians, healthcare assistants and Drs who treated Eloise and then again in the Maggies Centre, outside the hospital, where family could join to celebrate with Eloise)

Eloise receiving a certificate to mark the end of treatment

Grateful for a holiday and no tube!

So Eloise had her last dose of isotretinoin chemotherapy on Friday 5th August. Half an hour later the community nurse took her NG tube out, as Eloise takes all the other medications orally and also is taking a supplement orally (alongside food – although this is still relatively limited in variety). Ending the final round and removing the tube felt such a big deal – we haven’t seen our girl without an NG tube since she was 19 months… and now she’s 3. Eloise’s neutrophils came back up and we all recovered from Covid. Yay!

The next morning we went on holiday to Dunster, Somerset (Mel’s aunt kindly let us stay in her beautiful cottage – thank you!). And we managed a full 7 days – our first full week holiday since pre-pandemic! It was so precious – Eloise got stronger during the week, the weather was beautiful and the girls just loved the calm and peace of Dunster. Lots of playing in streams, playing in the park, walks round Dunster castle, steam train rides and time on the beach – and even having a family sea kayak. To be honest it was the closest to a  ‘normal family’ we have felt in nearly 2 years. And without Eloise having an NG tube we ‘looked’ more normal… we’ve actually got used to people noticing Eloise/Eloise’s tube for so long it was actually weird (and very nice!) to blend in and not stand out so much.

The holiday was a real blessing. It was time to see our girls just be girls – they continue to be best buddies and loved sharing a room (possible as we don’t have an NG feed going at night) and giggling. We are so grateful to God that we have been able to see this.

Eloise’s end of treatment MRI will now be on Friday (19th) and we will get the results the following week. We hope that Eloise will ring the bell the following week when we go into the Royal Marsden to meet her oncologist and discuss the scan. Having spent more of her life on cancer treatment than off it, we feel she deserves to ring that bell!

For those that pray:

  • Pray for the MRI scan on Friday! Pray that Eloise is cancer free and the scan shows all good news.
  • Give thanks for a wonderful holiday and for some very precious memories.
  • Give thanks that Eloise has finished her final round of chemo and has had her NG tube removed. Pray her weight stays up and she can remain tube free.
  • Pray for Eloise’s full healing – for her to development, her strength, her eyes, her brain. Pray for any damage caused by the tumour, hydrocephalus, seizures or the cancer treatment (surgery, proton, chemo) to all be fully healed.
  • Give thanks that Eloise is here with us and is smiling more each day.

We thought some of you would like to see Eloise tube-free. So here she is… her blonde hair has returned too. We are so grateful to our miracle-working God and to you all for praying.

Covid disruptions

On Monday we came down to Weymouth after being generously provided free accommodation at a stunning holiday park by a generous charity, Teddy 20. (Thank you so much!)

The holiday park had some incredible facilities, including a soft play and an amazing swimming pool, which both Anna and Eloise enjoyed tremendously. We also met up with some good friends who have a place (and beach hut) close by and we all enjoyed a fabulous morning on Weymouth beach – including paddle boarding for Eloise, Anna and Pete. 

Unfortunately on Wednesday Eloise spiked a temperature and was admitted into Poole Hospital. After several days of tests, IV antibiotics and a few room changes we found out that Eloise had contracted Covid. We were discharged on Saturday afternoon once Eloise’s temperature had consistently come down and are now back home in Guildford.

Eloise is tired and weak (especially from spending 3 nights in a hospital bed not moving and losing muscle mass), her blood counts also show she is neutropenic. We would value your prayers that she doesn’t pick up anything else, whilst in this weakened state.

Thank you to all those that have kindly messaged us ahead of Eloise’s planned MRI tomorrow. Unfortunately, this has now been postponed (a date will be booked once Eloise tests negative), as will the meeting with Eloise’s Oncologist on Friday (to go through the results of the MRI). These medical appointments (plus other “life” plans – such as settling in sessions at nursery) will have to be rearranged.

How do we feel:

  • Frustrated: Cancer is a long journey and we have learned to hold on to plans pretty lightly in the process. However, there’s no escaping that the timing of this infection and the knock-on impact is frustrating. Not only was spending the majority of our holiday in hospital pretty annoying, it’s the hours that will be spent re-arranging appointments that is also demoralising.  
  • Disappointed: Disappointed that our time away and the opportunity to do something different/fun with the girls was cut short. In Anna’s words “this wasn’t much of a holiday”.
  • Grateful: That we haven’t had too many extended hospital stays in the past year, that we haven’t had COVID before and that Eloise’s treatment hasn’t been too impacted by infections. Eloise is due to finish her year-long maintenance chemo on Friday and we have had few delays or bumps along the road. Ultimately, we are exceptionally grateful that Eloise is doing so well (relatively) and was in remission at her last scan.

For those that pray:

  • Protection for Eloise: Please pray that Eloise does not pick up any other infection and that her blood counts improve quickly.
  • Logistics: Please pray that we are able to smoothly rearrange all the medical/non-medical appointments. Please pray that we don’t have to wait too long for the rearranged medical appointments, especially the MRI.
  • Clear MRI: Please pray that Eloise continues to be in remission and that the next MRI (when it happens) is completely clear.
  • Continued recovery: Please pray for Eloise to get physically stronger, walk more steadily, learns how to run and have better balance. Although Eloise finishes the final round of her maintenance chemo this week, it will take until Christmas to wean her off some of the chemo drugs. We live in hope and faith that Eloise will start to improve once the side effects of this chemo drug start to lessen. Please pray this is the case.
  • Anna: Anna has also picked up Covid and is feeling pretty wiped from it. On top of the disappointment of an abandoned holiday, Anna has also had to miss spending time with friends and going to London as a treat with Grandparents tomorrow. Please pray that Anna recovers quickly and that her summer holiday is fun, full of laughter and joy-filled. She really deserves it.
  • Improved health: We are due to go away on holiday in a weeks’ time to Somerset. Please pray that we are all well (we all have Covid), are recovered and can organise access to the local hospital, which we need before we can go.  

Prayers for full healing

This blog was set up to keep people updated on how Eloise and we are doing, following Eloise’s cancer diagnosis and to ask for prayers as we journeyed along the treatment path.

Writing the blog, we have often wrestled with how to best walk the tightrope of disclosing all the facts, details and our concerns (especially for targeted prayer) and our responsibility to protect Eloise and to not publicly broadcast personal and sensitive information about her.

Sometimes this has prevented us from being as candid about the full impact that brain cancer and the side effects of the current treatment options have had on Eloise and the challenges she now faces.  We have also met and become friends with people and children who are going through some extremely challenging cancer journeys of their own – including many who sadly have not experienced the same road to NED as we have been blessed with.

So we’ve often not explained the full details, but feel we should now specifically still ask for prayer. We retain both hope and faith that Eloise will continue to remain NED, get stronger, recover lost functions, acquire new skills and start to develop some deep and joy-filled friendships (now she is able to mix a bit more with children).  Eloise is doing amazingly well and defying some massive odds/risks.  However, to boil Eloise’s recovery down to a linear path back to “normal” is too simplistic and not an accurate reflection of where she, or we, are at.

We’d therefore specifically ask for and would really value ‘big’ prayers for Eloise’s full healing – and for full restoration of what has been stolen from her.  Without going into the details of each one (the brain is just so complex – as is paediatric cancer treatment!), we’d specifically really value prayers for:

  • Her physical body, movement, responses and strength
  • Her sensory processing and memory
  • Her eyes and for her ears
  • For no tremors
  • Her endocrine system
  • For her eating

And ultimately for life in abundance. For her to love life and smile and laugh often! 

We’d value prayers that healing would be ‘quick’, that she would surprise Doctors and defy the odds.  In many ways this requires many more miracles.  We’ve needed big prayers to get her to this point (see here and here, or the story so far for a reminder of these!) and now we need big prayers to pray for full healing for her little body.  She has just been through so much.

For those that pray:

  • Please continue to pray that Eloise remains NED.  Her next scan is Monday 1st August.
  • Pray for all of the above ‘big prayer points’.  For full healing and for full restoration – and for this to be quick.  Please pray specifically for each one of these areas.
  • Protection from a secondary tumour/cancer (which Eloise has a high chance of)
  • For us emotionally as we start to process ending chemotherapy treatment and have another MRI coming up.

12th and final round!

So yesterday Eloise had her 12th and final intrathecal chemotherapy via GA. She was fantastic, as usual, and enjoyed her time at the Royal Marsden.

We are so grateful that Eloise has gotten better this week and it went ahead yesterday. She’s now got 4 weeks on her oral chemotherapy before she starts the weaning process off all her chemo drugs.

Eloise will have her MRI (via GA) on 1 August at St George’s and we will then get the results on Friday 5th August when we meet with her oncologist at the Royal Marsden. This is also the day after she will have her last oral chemo (excluding the one being weaned very slowly). What a massive milestone in sight.

For those that pray:

  • Give thanks Eloise has got better this week and her final round went ahead
  • Pray for the chemo to do what it needs to do. This is our last bat at killing any remaining cancer cells. So pray that if there is a single cell left, it will be obliterated this month!
  • Pray for Eloise’s MRI on Monday 1st August. Pray, pray, pray that it shows No Evidence of Disease and there are no other concerns.
Eloise recovering from her final intrathecal chemo

Full days

We’ve failed to write an update for a while – it’s been busy! Thank you for the continued prayers and messages, we are very grateful. Eloise has been doing (relatively) really well. She tolerated the intrathecal chemo well.

She’s had a busy and exciting few weeks, for which we are really grateful. The last few weeks have included a varied collection of things:

  • A day trip to Peppa Pig World for her delayed birthday treat. She ADORED it and was in the best part of her cycle. From her engagement and enjoyment, we think it was probably the best day of her life so far. What a blessing!
  • Appointments, appointments, appointments… OT, epilepsy consultant, usual nurses etc. The great news is that Eloise’s possible absence moments might just be fatigue-related (from treatment) and not absence seizures. Please pray this is the case!
  • Using the potty! As soon as Eloise was brought the ‘fancy potty’s’ from her OT she was determined to use them (whether we wanted her to or not 😂). And so she has – she’s done so well too! She’s certainly showed her determined streak and it feels quite a big milestone. What a hero you are Eloise! On chemo and still mastering a new skill like that.
  • Pete returning from Kenya. Others of us in the house being poorly… but are now fortunately better. Eloise seemed ok.
  • Anna’s celebrating her 6th birthday with a bouncy castle birthday party with her (20+) friends! Eloise joined in too.
  • Eloise also participated in the toddler race at Anna’s school sports day. Again, Eloise wanted to! She is determined to take part in things, even if her body isn’t as able/energetic as others.
  • Lots of preparation for starting nursery in September. Eloise will now proudly tell you she’s going to Rydes Hill nursery! We have been blown away by their support and help to get everything in place for Eloise to be able to start. It’s a huge amount of work and we are so grateful!
  • Proudly taking Kobe into Anna’s school for wellbeing week.

Unfortunately today Eloise is a little more poorly and spiked a temperature, leading to an admission into the Royal Surrey Hospital for further tests and checks. It has been several months since we last had to go in for an infection/temperature visit – but perhaps a little inevitable after a few more socially active weeks, with higher infection rates floating around. We are back home with antibiotics whilst awaiting blood cultures and results. Please pray that Eloise starts to feel better soon and is well enough to have her final intrathecal chemo on Friday (at the moment this seems a little questionable). We are hoping to be able to count down the final few weeks/days of active treatment!

It is astonishing that Eloise has nearly completed 12 months of maintenance chemo and remains in remission at the last scan. It is no understatement to declare this a wonderful miracle. Eloise still has a number of challenges and issues to contend with but the mere fact that she is still with us is remarkable. We don’t ever take this (or our time with Eloise, or Anna) for granted, we are truly grateful, humbled and just a little bit emotionally shattered.

Please do join us in celebrating this miracle and give thanks for all the answered prayers over the past (nearly) 2 years, since we first walked into a hospital.

Eloise will have her next MRI on August 1st, after her active treatment has (just about) finished, alongside the results from her detailed eye exam. We will update you again once we know the next steps on the road ahead.

Some pictures of Eloise enjoying Peppa Pig World for her birthday…

Eloise turns 3!

A day we thought might not happen has arrived (…. or will do tomorrow – we celebrated early this year). Eloise turns 3! Sometimes words (or tears) can’t adequately describe how we feel. But here goes:

Dear Eloise,

You are a much loved and beautiful daughter. It is very difficult to express in words how proud we are of you, how loved and cherished you are and how much we admire you.

You may not understand all these words yet but for now know this:

  • You are loved.
  • You are brave.
  • You are a fighter.
  • You are full of life
  • You are courageous.
  • You are a much-loved sister.
  • You are amazing.
  • We couldn’t love you more and you are so special to us.

We are so proud of all the challenges you have faced and overcome. We love the way you have danced, smiled, cuddled and courageously persevered. We have enjoyed watching you play with Kobe, taking you to the occasional, quiet, soft play and dressing up with Anna.

You are deeply loved by many and a deep inspiration to many more. We speak life and fullness and joy over you and a great future filled with friends, laughter, sleepovers, horse riding, peace and an unshakeable bond with God.

May the next 12 months continue to be miraculous – with huge health advancements, deep friendships as you start pre-school and return to church, increased strength (especially to play) and a growing confidence.

We love you.

For those that pray:

  • Thank God for Eloise and for reaching her third birthday
  • Thank God that Eloise is in remission and pray that she continues to be!
  • Give thanks for a fun half term with cousins and a little tea party to celebrate Eloise’s birthday

This week is a particularly busy week of appointments and admin for Eloise.  Plus Pete is away with work in Kenya for the week (Mel’s mum is kindly staying to help Mel and the girls). We would greatly value your prayers for:

  • Eloise’s appointments with Epilepsy Consultant, Occupational Therapists, Physiotherapists and Community Nurses
  • Eloise starting round 11 of Chemo on Thursday – pray for the usual logistics around giving a toddler a General Anaesthetic and intrathecal chemotherapy at the Royal Marsden.
  • Anna and Eloise’s general health – both girls have been unwell in the past week.  Eloise needs to be well to receive the intrathecal chemo on Thursday – please pray that she is strong enough and also avoids picking up Anna’s illness either.
  • Wisdom about responding to Eloise’s draft EHCP to the local authority – pray that Eloise is provided the best and most appropriate support for her education.
  • Pray for limited side effects of the chemo – particularly pray for limited (or no!) tiredness, nausea, food aversion, tremors and sore skin.
  • Pray the chemo does its job and keeps the cancer away!

Eloise celebrating her third birthday

Chemo and MRI debrief

Today, Eloise had her 10th intrathecal chemotherapy.  Only 2 more intrathecal chemo’s to go – 3 more months of chemo drugs…. The plan is for her to finish treatment at the beginning of August.  We can see the end of treatment in sight.

Eloise tolerated the chemo really well today and thoroughly enjoyed her day and ‘magic sleep’ at the Royal Marsden hospital.  She tolerated being nil by mouth and didn’t have to wait too long (she went down at about 10.30).  Pete and I were both allowed onto the day ward, and to ‘put her to sleep’ which was special.

This afternoon we met with Eloise’s oncologist.  We went through the radiologist report which states there is nothing to suggest recurrence or metastasis!   Wow wow wow.  She still has low CSF pressure but there was no mention of microhaemorrhages. We then chatted about how Eloise was doing and the next steps.

How do we feel?

  • Quite emotional at times – wondering how Eloise is where she is, and in awe of her defying such dreadful odds.  It’s quite hard to get your head (and heart) around….Defying the odds, but the fight isn’t over.
  • Still very acutely aware that Eloise has some long-term effects of all of her treatment.  Treatment to save her life comes with a cost.
  • Massively grateful to have Eloise (and Anna!) with us and to be enjoying some fun times together when we can.

For those that pray:

  • Give thanks for the miracle that Eloise is here and that her scans show no evidence of cancer!
  • Give thanks that she tolerated the chemo well today. 
  • Please pray that she tolerates this chemo round well (4 weeks) – particularly the second half when she has the additional chemo drug which seems to impact her more. 
  • Please pray for the long-term side effects of her treatment.  This is a biggy and one we are acutely aware of at the moment.  Please pray these side effects reduce, are not long term and that Eloise isn’t held back or hindered by any of the side effects. And pray that she has life in abundance!

Our lovely Eloise

Early indications show that the scan is clear!

Late yesterday we got phoned by the Royal Marsden to inform us that although they don’t have the full radiologist report they still discussed Eloise at their weekly Neuro-Oncology Team Meeting. Mr Singh (Eloise’s neurosurgeon at St George’s) said he had looked at the scans and they looked “all clear”. We will still wait for the official Radiologists report and go through the scans on Wednesday with Elosie’s Oncologist – but they felt confident enough to say that they looked all clear.

This.is.amazing.

Each time it doesn’t get any easier and we are super thrilled, grateful and immensely relieved. We continue to take each day and scan one at a time – knowing that this is a long journey but today, this weekend, our hearts are full and we are celebrating another clear scan completed, hurdle navigated and milestone passed.  It’s an odd mix of emotions – gratitude and relief whilst knowing the fight still isn’t over, even after all these months/years.  It can feel quite relentless.

Thank you Lord for answering our prayers, for protecting Eloise against relapse and for helping her to slowly recover and grow up. Thank you for all the prayers, faith exercised and love showered on us and Eloise. We are so grateful.

In non-medical news, Eloise has been awarded an EHCP, which will entitle her to additional support in school in the future, which is a further, wonderful answer to prayer.

Eloise still has a long way to go to firstly beat the cancer and then secondly, reclaim some of the normal life and abilities of a child. We are so proud of her and the progress she is making.  To demonstrate her determined character and growing confidence Eloise decided last week that she wanted to ride a horse (to match Anna, who was having a horsing riding lesson) – and she duly did, which seems like a fitting place to finish a remarkable and pivotal week. Thank you LGB Equestrian!

Next steps: Chemo Round 10 starts on Wednesday and review of the full radiologist report.

Eloise enjoying her ride