Eloise has thoroughly enjoyed being at home for the last few days. She’s the strongest she’s been since pre-Christmas and it is wonderful to see. We treasure our time with her and Anna.

There are no further treatment updates yet. We have the usual community nurse visits tomorrow and a few other appointments over the next few days, but the main thing we are waiting upon is the outcome of the Drugs and Therapeutic Committee meeting. Please keep praying that the committee approve the drugs and that Eloise can have the full drug combination in the UK. Please also pray that the next MRI (the first after proton beam) shows No Evidence of Disease.

Over the past few days, we’ve had a little more time to reflect on the past few months. In many ways it’s still shocking to think about the journey Eloise has been through – it really is ‘bonkers’ on so many levels. As a few people come to our blog ‘fresh’ we have written a summary of the journey so far, which we have included as a link on the home page – we thought others might appreciate reading this too. Writing this has reminded us of the extreme journey it has been, and how amazing it is that Eloise is where she is today. Thank you for journeying with us, persistently praying for us, loving us and supporting us. We have been, and continue to be, truly humbled and grateful.

We are forever indebted to the NHS and wonderful staff at The Proton Beam Therapy Centre at The Christie Centre in Manchester. Here are some pictures and video of Eloise’s final day of Proton Therapy and her ringing the bell to mark the end of treatment.

Coming down the stairs with Proton staff in tow, hugging Anna and ringing the bell!

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How do we feel:
From the start of the journey, when we discovered Eloise had a brain tumour and cancer, we have both often cried when we have heard someone ring the bell (to note the end of treatment or when somone is NED/complete remission). Yesterday was the first time Eloise has rung the bell to mark the end of a treatment – its not the end of her treatment, but the end of proton beam therapy was a big marker. It was an emotional day on many fronts. It was also an unsettlingly sad day knowing the journey is far from over. Here are a snapshot of some of the emotions we felt:

• Proud: We are so unbelievably proud of Eloise. The way she has taken the treatment in her stride. 30 days of no breakfast, 30 days of general anaethestics. 30 days of waking up to a (generally) different nurse. Eloise travelled up to Manchester whilst still recovering from high dose chemotherapy with stem cell transplant, and was still very weak. She has progressively got stonger, less nauseous and more smiley. She made friends in the playroom and with the medical staff and visibly got stronger each time Anna came to visit. She is truly remarkable and truly a fighter. Her love of music and dancing is returning and its as if she knows she is starting to get better.
• Grateful: We are exceptionally thankful for this life saving treatment and the fact that Eloise had access to it and was approved for treatment. A few years ago, this would not have been an option – and we know for billions in the world, this isn’t an option. We are grateful and humbled we have got this far – for the support that has carried us here and for all those that have prayed. We are so, so grateful.
• Nervous: We don’t know if the treatment has “worked”. Eloise will need to wait for the swelling in her brain to settle before she has another MRI. Only a small number of ETMR patients make it this far and some of them relapse during Proton treatment. We feel Eloise has had the best treatment but very sadly that isn’t always enough. We hold on in hope that Eloise is in complete remission and for the cancer to never return.
• Restless: We know this is not the end. Not only will Eloise have further treatment and lots of tests to monitor the side effects of the treatments but we also know that statistically she has to remain cancer free for 2 years for her long term odds of survival to start to turn in her favour.
  
  Eloise will continue to have lots and lots of appointments with different speciailists – we’ve totalled at least 12 specialists she is under – from audilogists, to ophthalmologist, to physiotherapists, to speech and language therapists, dieticians, occcupational therapists, endocrinologist, oncologists, neurosurgeons to check her shunt and recovery, tests to check kidney function, psychologists, epilepsy consultants etc etc ! The brain (or sometimes her treatment) affects her whole body…. but the NHS is marvellous, and so far Eloise is doing superbly…

Eloise has been approved for Intrathecal topotecan chemotherapy at the Royal Marsden in the UK (the chemotherapy drug to be directly administered into her brain and spinal fluid via a lumber puncture).  Thank you to those of you that prayed! 

We are so grateful for getting over this huge hurdle.  Our oncologist is now putting Eloise forward to the Drugs and Therapeutics Committee to approve the combination of drugs that are being recommended by the ETMR expert – the intrathecal topotecan with the two other agents.  Unfortunately, we won’t find out about whether the additional drugs will be approved until mid-July (16^th July at earliest).  Eloise will need to start treatment pretty soon afterwards.

We are therefore narrowing down our back-up options and suspect we will head to Spain (Barcelona), at the very last minute, for the Topotecan with additional agents – if they aren’t approved in the UK.  We are grateful that this has come together and is a viable back-up option. We are exceptionally grateful to oncologists across the world for all their help – people have genuinely done their best to help her.  What a privilege and blessing.

That said, we would REALLY like Eloise to be able to get the full maintenance chemotherapy treatment in the UK.  Having it in the UK would obviously be much more beneficial from a financial, logistical and family perspective.  So we would really value prayers that the Drugs and Therapeutics Committee agree to this….  We keep holding on in hope.

Eloise finishes Proton tomorrow!!!! What a marker in the sand.  We will post a video of her ‘ringing the bell’ to mark the end of the proton treatment (she will never have proton again).  Anna is very excited to also witness the ringing of the bell!

For those that pray:

• Give thanks that Eloise is doing so well!  She has tolerated proton beam therapy brilliantly, and is getting stronger.  Today she loved trying out her new scooter with Anna (they both had scooters for their birthday), after her GA/treatment.  What a hero.
• Please pray for continued protection against relapse.  We were today told of another ETMR patient that relapsed as soon as proton ended…  We know Eloise is far, far from being out of the woods.  Please keep praying her through the next 2 years which are so, so risky.
• Please pray that the combination of drugs is accepted in the UK.  As so little can be done if Eloise relapses and the chances of relapse remains so high, we feel we only have ‘one-shot’ and want to give Eloise the absolute best chance that is available based on the available evidence. 
• Give thanks for the love and support we have had through this journey.  It’s been an awful rollercoaster for 8 months – but we have been blessed throughout, by God, by friends and family, and by many others we hardly know.  It’s carried us all.

Just a little post:

Would be really grateful for prayers for a meeting today that our oncologist is having about Eloise’s treatment. We understand our oncologist is presenting to the Intrathecal committee, with some evidence from the leading ETMR researcher from Canada, on the need/benefit for Eloise to have intrathecal topotecan as a maintenance chemotherapy drug over the next year – to increase her chance of survival. ETMR’s are just so deadly. As we’ve noted before – both the drug and the intratethecal method (ie administering the chemo drug directly into the brain/spine) need to be approved, as they’ve not yet done this in the UK before.

Please pray that that somehow they approve it – and that Eloise can have intrathecal topotecan, and that we also work out and can access the accompanying oral agents Eloise needs to have alongside this. Having the maintenance chemotherapy in the UK, under the NHS, would just be SOOO preferable for zillions of reasons – avoiding the need to travel overseas every month for at least a year (issues with covid, visas, travelling all the time with a poorly toddler etc) , separating us as a family again, and also the huge cost (still undefined). We will do whatever it takes, and are hugely grateful for our marvellous oncologist – but the UK is our massive preference for Eloise, ourselves and Anna.

We don’t know when we will hear the outcome of the meeting, and there might be further approvals needed, so whilst we wait we continue to take forward the options overseas too (mainly Spain and the US).

We desperately want our girl to live – and to have life in abundance! She’s living upto that at the moment, having done miraculously well despite the odds and she’s loving life, and we pray earnestly that this will continue.

We would really value your prayers for today’s meeting .. Thank you xx

If you’ve been following the blog over the past few weeks, you will know we have been working on Eloise’s future maintenance chemotherapy – at the recommendation of the ETMR experts.  Without going into all the ins-and-outs of some very complicated options/scenarios, we would be really grateful if people could pray.

At the moment we have several plates spinning:

• Our oncologist is continuing to try to explore options for Eloise to have Option 1 (intrathecal topotecan) in the UK.  This is our preference. There are risks involved, especially as Eloise has a shunt, but it is the main recommendation from a leading ETMR expert/researcher, based on the limited evidence so far.  But for this to happen, numerous challenges need to be overcome and the clock is ticking.  Please pray this option lands – and fast.  And if it’s not, then we would know quickly too, so decisions can be made about alternative options.
  
• We are also exploring alternative options for Eloise to have intrathecal topotecan overseas.  At the moment we have been liaising with hospitals in Spain and Canada about options for treatment and whether practically Eloise can be taken as a patient. 
  
• We are also continuing to take forward Eloise having an alternative treatment, Option 2 (DFMO) in the US.  This is part of a clinical trial.  The drug is possibly less invasive, but still has differing side effects (and some of the very few ETMR survivors have first had intrathecal topotecan before having DFMO).  We have applied for US visas so that this option is available to us – and because there is a very long time lag for visas – and are liaising with oncologists and the clinical trial leads to keep the process moving. 

Each one of these options is requiring quite a lot of admin…

Please pray that an option lands – and fast.  Doctors and hospitals around the world are being brilliantly helpful.  Solving Kids Cancer have been really helpful in supporting us with applying for US medical visas.  But we would REALLY prefer for one option to land quickly (this week?!), so we don’t waste people’s/medical staff’s time unnecessarily and would prefer not to also fork out expenses unnecessarily (visas, consultation costs etc).  Also, its all much more complicated because of Covid travel restrictions, and the thought of travelling to/from many of these countries for many (12-24) months for treatment is slightly overwhelming.

We are willing to do anything to get our daughter the best treatment (as any parent would), but would be grateful if you could pray for us to get answers this week, so things can start to come together….and for plates to stop spinning.    

Eloise is due to finish Proton beam therapy next week, and will need to start either treatment in the next 2-6 weeks (6 weeks max).  She continues to do really well with the daily general anaesethic and proton beam treatment – loving life, chatting away, playing hide and seek, climbing slides and stroking dogs (her current favourite pastime).  Her eyebrows and eyelashes have started to grow back after losing them from high-dose chemotherapy, so that is lovely to see too. What a hero! 

Whilst this blog is to udpate people about Eloise’s health and to provide some things for people to pray about, we felt today we should write a short post to mark Anna (Eloise’s sister) turning 5. The girls continue to adore each other and we are so grateful to Anna for being such a superstar over this past year!

Our amazing daughter, Anna, turns 5 today.

Anna – we are so unbelievably proud of you. You are a sweet, caring, feisty, considerate and compassionate girl. You care for people and the world around you deeply. We are proud of the way you have grown up this year, the way you have dealt with all the constant sudden changes, starting school (and then homeschooling) and seeing your sister so unwell. It has been incredibly difficult for you, and you’ve had to face things no child should, but we have been amazed at how you have responded. We couldn’t ask for a more wonderful girl. Keep being you. Keep making friends in parks, loving all animals and bugs, enjoying drawing and craft, giggling and making dens.
We love you so much!

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Eloise is going from strength to strength.  We are so proud of her!  She has definitely found the proton beam treatment the most tolerable of her treatment so far, as we somewhat expected, but we know that its also the most likely to have long term side effects – so please, please continue to pray against this!  We desperately want her wonderfully smart little brain to be protected.

We were reunited again at the weekend which was wonderful!  We were also able to meet up with family and friends in Manchester, which was so special.  The weather has been kind which has really helped and much of the time Eloise has been walking around and playing outside in parks. Anna and Mel are now back in Guildford so Anna can to go to school.

The right open door needs to open….

Much of the rest of the time, we (Pete and Mel), have been working on the plans for Eloise’s next phase of treatment after proton beam therapy (12-18 months of maintenance treatment).  As we said in our previous blog, there are 2 main recommended treatment options for Eloise going forward, otherwise it is surveillance (just watching and scanning to see if there is any re-growth or metastasis…).  As it currently stands, neither of the 2 treatment options are available for Eloise in the UK so we are pursuing options for treatment abroad.

It is vaguely possible that one of these options (Option 1) might be possible in the UK and under the NHS, but at the moment this isn’t clear/hasn’t been approved.  There are quite a few challenges to overcome for this to come about (both the drug, and the way to administer it, would both need special approval…!).  Please pray, that if Option 1 is the right treatment – that the door is opened and Eloise can access it. If it’s not (and the EMTR research is so sparse, its impossible to know which is the best treatment), please pray that we can get the alternative treatment (we will call it Option 2) privately overseas and that the logistics can come together….

It is so hard to have a child with such a rare disease that so little is known about, and one that the NHS isn’t used to treating it/hasn’t yet successfully treated it before – the only UK survivors we know of both had to go abroad privately for treatment.   But we are so grateful Eloise has got this far, has had a gross total resection and is having proton beam treatment so quickly – which we know is crucial in order to give her a chance.  And we are incredibly grateful for the most amazing oncologist who is doing everything she can to give Eloise the greatest chance of survival.

Please, please pray for the right door to be opened – and for the route ahead to be made clear (perhaps all the other options shut, so the right door is the only door available?!) .  We are doing all we can to research, pray and push doors and now we need the right thing to come about.  Eloise finishes Proton 2 weeks today and she would need to start this treatment 2-6 weeks after! The clock is ticking fast…

How do we feel?

• A little more rejuvenated having had some time all together.
• It’s very odd having a child with such a rare cancer, where as parents you become semi-experts and have to pursue treatment options.  It seems quite different to having a disease where there are clear treatment protocols…. It is intellectually stimulating, but also quite pressurised as we aren’t medical professionals but desperately want to get the best treatment for our daughter (as any parent would).
• I (Mel) read this blog the other day. Whilst written for an American audience (e.g. we don’t have little red wagons in the UK hospitals) I found it brilliantly articulated some of what it has been like over these past few months.  There’s so much more we could say and for us to process, but for now we are hanging on in there – praying for our little Eloise to be a miracle.  God has brought her this far and we hold onto Him.
• Chuffed and appreciative of a lovely five-year old girl Lucy, in Anna’s class, who had her beautiful hair cut last week to donate to the Little Princess Trust (wigs for children and young people) and to raise money for Solving Kids Cancer who are doing some research into ETMR’s (one of only a couple of places that are doing some very limited research).  We are overwhelmed by Lucy’s kindness and generosity.  Thank you Lucy!

For those that pray:

• Give thanks that Eloise is doing so well.  We know that many ETMR patients would have already relapsed over the past few months since surgery.  Praise God that Eloise is managing to dodge some pretty-high odds and so far seems to be navigating a very narrow path and doing brilliantly!
• Please pray for the right open door for Eloise’s maintenance treatment.  Pray for the right treatment to be clear, and the right doors to be flung open wide!
• Please pray for continued protection from the daily proton beam treatment on Eloise’s brain and for protection against seizures. 
• Please pray for Anna.  She is clearly missing Eloise dreadfully and most days (when she’s not seeing her) just laments that she wants Eloise to come home.  During these challenging months, it feels a double-edged sword having sisters that are so close to each other.  Pray that Anna feels loved, secure and copes being away from Eloise (and Pete/Mel) so much. 

Eloise is half-way through her proton beam therapy! She is doing so well and continues to enjoy being an outpatient and trips to the park in the afternoon. Most days she’s getting more accepting of being nil by mouth. She enjoyed time with Nanna V last week, and this week her other Nanna! Precious times.

Anna and Pete are at home but plan to come up at the weekend (after Pete finishes isolating). It will be lovely to be together again!

Every day we are so grateful for the treatment that Eloise has been given under the NHS. It really is astonishing and a testimony to how much we as a society value life. The love and care Eloise has received is outstanding.

We are currently in the process of working out next steps for Eloise’s treatment (maintenance chemotherapy for 12-18 months). This is getting a little more complicated as the drugs recommended by the ETMR experts in Canada and the USA are difficult/impossible to access in the UK. The evidence is sparse on the two key treatment options, but as relapse is so high/likely and the vast majority of the few ETMR survivors have had this treatment, the experts recommend Eloise having it – so we feel we must pursue it. The alternative is just monitoring Eloise – but sadly as so little can be done if Eloise does relapse, we feel we must keep pushing forward and try everything we can to prevent this.

At the moment we are therefore exploring all options (UK/NHS and private overseas) and are really grateful for having an amazing oncologist at the Marsden who is leaving no stone unturned and helping us to explore all of the options. There are a huge number of logistics that will make a lot of this tricky/impossible (!!) so we would value prayers that the path would be really clear – that the right treatment would be possible, and that logistics would be doable (whether in UK or overseas). We are going to need strength, stamina and a lot of miraculous open doors…

….And Eloise ideally needs this treatment starting between 2-6 weeks after proton (max 6!), so it’s only a handful of weeks to make the decisions and sort all the logistics/admin out. It’s another huge hurdle…

How do we feel?

• Mel is a little exhausted from the night NG feeds and disturbances, but apart from that is doing well.
• Missing each other!
• Trying to explore all options… and hoping that the right path will open up.

For those that pray:

• Pray for continued protection of Eloise’s brain from the proton therapy
• Pray for the proton treatment to work!
• Pray for wisdom and open doors for the next steps with regards to maintenance chemotherapy

Over the last week Eloise has done really well – she’s getting stronger by the day, tolerating the anaesthetic well and enjoying being an outpatient.

Eloise thoroughly enjoyed her birthday weekend – all four of us going to Tatton Park on Saturday, opening her presents and to the park with Nanna V on her birthday on Sunday afternoon. You can see that she spends most of her time just wanting to be a normal kid!

She’s had 11 of her 30 treatments and so far, so good. She’s had no seizures and doesn’t seem to be getting too nauseous… she’s just a bit wobbly on her feet in the afternoon (looking a bit drunk from then anaesthetic).

Pete is back in Guildford with Anna so she can go to school. Unfortunately, Pete has come into contact with someone with Covid, which means he now has to self-isolate (Pete is fully vaccinated, so it should be fine, but he needs to self-isolate nonetheless). Fortunately, Anna didn’t see the person and can continue to go to school (big thanks to the Sharpes for assisting with the school run, whilst Pete can’t go out).  This is obviously quite annoying as it means Pete and Anna can’t come up to Manchester for a while. But worse things happen….and another reminder that the virus is still very much around.

For those that pray:

• Give thanks that Eloise is doing so well and getting stronger. Pray that Eloise continues to cope with the Proton therapy well
• Pray the proton beam therapy does what it needs to do and OBLITERATES any remaining cancer cells.
• Pray for protection for Eloise’s brain during proton beam treatment – that her short term memory and other key functions will be protected.
• Pray against relapse that continues to be such a high risk.
• Pray for our oncologist and us as we start discussions about Eloise’s post-proton and future treatment. Pray for wisdom to know what treatment to give to prevent relapse.

Our wonderful and delightful Eloise turned 2 today. There is so much we could say and we don’t quite know how to summarise it. But here goes – Eloise you are amazing and we are so proud of you. The last year has been harder on you than we could have ever, ever imagined and we are so desperately sorry you are going through this. But you have lived up to your name – you fight for life in all its fullness. You are absolutely amazing. You always give everything 100%. You try, try, and try again, never giving up. You inspire us, have taught us so much and we couldn’t love you more. Thank you for bringing so much joy to our and Anna’s lives – for your sense of humour, your intelligence and your steely determination. We pray that you continue to grow into all that God intended and that you know how much you are loved and how incredibly proud we are of you.

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