Eloise has had 6 sessions of her proton beam therapy (PBT) and so far it’s been going well. As a friend commented – it’s 20% and we would have passed the 5 mile mark in a marathon.

We are so grateful it’s been going well. Eloise has been getting hungry (and angry) in the morning before treatment, as expected, but apart from that is doing fine. She’s tolerating the constant anaesthetics and hasn’t had any seizures. She doesn’t seem to be too nauseous/sick (yet). She’s obviously tired at points, and she’s needed one blood transfusion at the Manchester Childrens Hospital (another great place!), but apart from that she’s still generally got enough energy to go out in the afternoon. She’s even smiling a bit more too (we think getting stronger and actually having some time with us not wearing a mask is helping!).

One of the highlights of the past week was seeing the extended Lawson family at a park on Sunday afternoon. The girls were able to see family they haven’t seen for 18 months and meet one of their newest cousins. What a treat. The girls have also just enjoyed generally being together for an extended period of time.

How do we feel?

Emotionally we’ve found the last while a bit more challenging. Other children we know of, who have similar brain tumours/cancer have been going through a tough time and we feel so desperately sad for these families. Desperately sad. We are grateful for how Eloise is currently doing – but knowing things can change pretty much instantaneously and that we never know what the next day brings.

For those that pray:

• Praise God that Eloise is tolerating the PBT so far, is smiling a bit more and hasn’t had any seizures!
• Please pray all the above continues – especially as some of the side effects are cumulative and thus more likely to kick in over the coming weeks.
• Pray that this OBLITERATES any remaining cancer cells and that Eloise doesn’t relapse – either during PBT or after. Please continue to pray for a miracle and for Eloise to defy all the dreadful stats.
• Please pray for massive protection from the long term side effects of this treatment. Pray for Eloise’s brain to be protected.
• Please pray for other families also having to go through horrendous journeys of having a child with a dreadful cancer.
• Please pray for Anna too – we are conscious the last few months have been exceptionally hard on her too

30 general anaesthetics, 30 proton beam therapy sessions, 30 mornings of being nil by mouth, many CT scans and X-rays (starting off daily, then every few days) and 3 birthdays…it’s set to be a full 6 weeks in Manchester!

Today Eloise had her first Proton beam therapy treatment.  It marked a big day in obliterating this brain cancer. It really is a key moment.

The last few days have been full on. We enjoyed being at home for a few days all together – seeing some family and friends and feeling, for just a few days, a little more ‘normal’. Unfortunately on Monday, Anna had a mild temperature so needed to be off school until we got the negative result of a Covid test, and Eloise had her audiology appointment and various check up appointments at the Marsden.  Eloise’s hearing results are ‘inconclusive’ but nothing seems to be of concern.  As you can imagine, we still have ‘normal’ life challenges alongside the Eloise situation…

We all (including Anna) drove up from Guildford to Manchester last night after school to start Eloise’s 6 weeks of treatment.  We are staying at StayCity in the centre of Manchester, overlooking Manchester Piccadilly.  It made for a late night and we’ve all been feeling rather tired today as a result.  Eloise had to be nil by mouth from 3am, so she had her NG feed until then.  We all (including Anna) had to miss breakfast and drinks this morning, in support of Eloise – and will need to for the next few weeks (we can’t be having our morning coffees etc when Eloise is asking for breakfast!).  We are one hungry family…

But Eloise did really well.  She was certainly ‘hangry’ today – saying persistently ‘breakfast’ or ‘snack’ for several hours…often crescendo-ing to quite an unbearable level (she clearly thought I, Mel, could not hear and still doesn’t understand why I’m not hearing/understanding/giving her breakfast!).  But she successfully got through the first of her 30 GA’s and proton treatments uneventfully, and was back at the flat by 2pm.

How do we feel?

• Whacked!  Physically and emotionally we feel exhausted at different times – and it’s often surprising when it hits us.  Today was one of those days.  Exhausted from the trip up (since Eloise’s surgery she really doesn’t like anything moving such as the car or buggy, so car journeys can be challenging). Emotionally exhausted from reaching this point – knowing that WE NEED THIS TO WORK.
• Grateful for Eloise being an outpatient and us all being able to be together, but equally conscious that the next few weeks will still have its challenges.  It’s hard to know how to parent her or what to expect – and no day quite goes to plan.  Eloise does so well on most occasions but it is hard to know what to expect of her and how best to respond to her.
• Conscious that this treatment also has some short and long term negative side-effects that will need to be managed.  In the short term, the proton treatment will cause swelling in the brain (which is likely to cause headaches and possibly further seizures), sickness, redness on the scalp, and for Eloise to be very tired and sombre for several months.  As we have mentioned in previous blogs, there are also several long term possible and very likely side effects.

For those that pray:

• Give thanks that Eloise has come this far with so little side effects of her multiple surgeries and high dose chemotherapy treatment.  Give thanks that she continues to have none of her partial seizures since the surgery that removed the tumour.
• Give thanks that Eloise has been able to start Proton Beam therapy.  This is such a blessing and a big answer to prayer.
• Pray that the proton beam therapy treatment works!  We need it to kill every microscopic cancer cell!
• Please pray for limited short term and long term side effects.  Please specifically pray against any seizures (particularly generalised breakthrough seizures) as a result of proton therapy – we are conscious that Eloise has had these previously during intense treatment.  Please pray this doesn’t happen (especially as she is an outpatient).  Please also pray for long term protection for her brain – for limited effects on her short term memory function.  She’s a smart, sassy girl and we want her to have life in abundance and be everything God made her to be! 

Keep living up to your name Eloise Zoe!

Eloise enjoying some (nutritious) crisps after successfully completing her first treatment!

We unexpectedly arrived back from Manchester late last night, concluding a successful trip to the Christie Centre for planning the Proton Beam Therapy. The trip wasn’t without entirely without event though…

Following the last update on Monday night, Eloise’s scans (CT and MRI) and face mould fitting went well on Tuesday. Thank you for all those that prayed. Eloise went under GA at about 1pm and then had her various scans etc.  She then went to the Manchester Children’s Hospital for her shunt to be adjusted (the MRI adjusts the shunt setting each time).  Unfortunately readjusting the shunt back wasn’t very easy to do and after several failed attempts, followed by several x-rays to see if the shunt needed adjusting (which it eventually showed it did!) we returned to the flat without an unadjusted shunt and needed to return the next day.  Eloise was a legend…bloods, MRIs, CTs, mould fittings and several x-rays in one day!  Well done Eloise!  Just for a laugh though – we got back to the flat about 9pm, and 5 minutes after Eloise fell asleep, the fire alarm in the flat went off due to an electrical fault.  We did eventually get to bed…

Yesterday (Wednesday) lunchtime we returned to the Children’s hospital and the shunt was adjusted corrected – so all good now!  We were then told that The Christie Centre had everything they needed from the scans, so we could go home.  Fantastic!

Eloise will start Proton Beam therapy in Manchester on Wednesday (26^th) morning.  This is earlier than we expected and is great news!

We now have a few days at home, with a few appointments on Monday, before travelling up to Manchester on Tuesday.  There are quite a few logistics and practicalities to sort to be away for so long (from prescriptions and feed deliveries to be in the correct place, Covid tests, to sorting diaries/appointments and plans for Anna etc) but we will enjoy a few days at home all together before we embark on this next stage. 

That said, Eloise has just pulled her NG tube out again (she did twice at the weekend too!) and so we are heading back into the Royal Surrey for them to re-fit it, so we can give Eloise her feed tonight.  Such is the life of a kid with cancer unfortunately (no day is off!).

 For those that pray:

• Give thanks that Proton planning went well and that Eloise will start therapy on Wednesday!
• Give thanks that Eloise is doing so well – she really is.
• Pray that the next few days go smoothly and that we can sort all the necessary logistics.  Pray for energy to keep going! 

We arrived in Manchester yesterday and are really grateful to be staying in a lovely city centre aparthotel (StayCity) that is provided for families of children receiving proton beam therapy treatment.  It feels a big upgrade to a hospital pull out bed.  There is a shuttle bus that takes us from the Aparthotel to the Proton Beam Therapy Centre at the Manchester Christie hospital, which we took this morning (leaving at 7.15). 

Anna has stayed back in Guildford so she can continue going to school this week, and as much of this week will be appointments for us in Manchester.  We hope to bring her up for some of the time, when we come ‘properly’ for Eloise’s 6 weeks of treatment.

We had a few initial appointments and consultations this morning, including with the lead oncologist who is taking forward Eloise’s treatment whilst she is here at the Christie centre.  Unfortunately it was another case of us having to consent to things we wish we would never have to agree to, but we are unbelievably grateful that Eloise is being given this treatment.

Tomorrow Eloise will have blood tests, an MRI and CT scan for proton planning (under General Anaesthetic), and a face mask will be moulded around her face to be used in the therapy.  Unfortunately the MRI isn’t until noon, so she will be nil-by-mouth from 6am… it might make for a long day!  Eloise will then travel from the Christie Centre, to Manchester Children’s Hospital for a neurosurgeon to check her shunt following the MRI in the late afternoon.  We are continuing to ‘collect hospitals’!

Proton beam therapy

Proton Beam Therapy (PBT) is a relatively new treatment.  The Proton Beam Therapy Centre here in Manchester is the first Proton centre on the NHS in the UK – and the only centre in the UK which can cater for children (private or NHS).  PBT is a form of targeted radiotherapy which limits the dosage of proton beams to the non-targeted area (see video here for more information).[1]  This type of treatment is even more essential when treating highly sensitive areas, such as the brain.  Normally, radiotherapy is not given to children under-3 because of the negative side effects, but PBT lowers some of the risks of radiotherapy as it limits the radiation dosage to the surrounding areas, and is therefore an option for Eloise.

For Eloise, with a highly aggressive ETMR brain tumour, this treatment is essential to giving her a chance of cure/survival.  It doesn’t mean it will be curative, but it gives her a chance….and for that we are unbelievably thankful. 

That said, there are unfortunately still some long-term risks from PBT on the brain – particularly for very young children whose brains are rapidly developing.  These include risks to sight, hormones, hearing and Eloise’s short-term memory function. Many of these risks we won’t know about for many years (5-10 years), and some of these risks even with PBT are still quite high.  It’s hard to be making these decisions on behalf of Eloise, but we do so with our eyes wide open and in the hope that the treatment will help cure and obliterate the cancer.

How do we feel?

• Relieved and grateful.  We have known for some time that Eloise would need Proton Beam Therapy if she is to have a chance of survival (and have a quality of life).  The facility here in Manchester is outstanding. With Covid, Eloise’s health and the inability to fly overseas – we feel very fortunate to have got Eloise here to the one centre that could treat her.  We also feel very blessed by the timing of PBT coming to the UK (especially in light of Covid) – the centre was only opened in December 2018, so if we had been in a similar situation with our elder daughter Anna, Proton Beam Therapy in the UK would not have been an option.  We are also grateful, as we understand that Eloise was the first ETMR patient to have been accepted for this treatment on the NHS – but know that others have since been accepted too! Yes!  We are so blessed.
• We.feel.weary.  We are still feeling quite tired from the lack of sleep due to having to monitor and turn off Eloise’s NG feeds over night and the constant emotional rollercoaster of a journey.  Eloise was very unimpressed to leave Anna yesterday having had a great week at home, and even more unimpressed to walk into a hospital today – and she now has more energy to make this known.
• Enjoying staying in a flat all together.  In a weird turn of events, Eloise has never stayed in a hotel before (she was only 7 months when Covid arrived and before that we’d only stayed in Airbnb’s for our holiday in South Africa etc) – so this aparthotel is the closest she’s had to a hotel.  Not quite how we’d envisioned her first 2 years of life, but we are hoping that there will be years ahead for us to make it up to her (and Anna)!

For those that pray

• For the MRI tomorrow.  Please pray that it shows no growth and no surprises!  We won’t actually receive the full scan, but apparently we will be informed if there is anything ‘surprising’.  Please pray there isn’t!
• For Anna to be ok without us this week.  For her to have fun with her Nanna’s and enjoy seeing some friends now that Covid restrictions are easing.
• For Eloise to cope being nil-by-mouth until she comes round mid-afternoon tomorrow.  It’s a small prayer, but makes quite a difference to our day.  Only one of us is able to go with her, and ‘hangry’ toddlers that have to do lots of tests/procedures aren’t particularly easy…Poor girly.
• For Eloise to be able to start proton treatment as quickly as possible.  We really need this to be quick, so please pray for everything to go smoothly, and for there to be no unforeseen -hickups.

---

[1] The centre in London is due to be opened later this year (it has been delayed due to Covid).

The last few days Eloise has been at home and has had such a fantastic time!  It’s been a joy to see Eloise love ‘normal things’ such as going to feed the horses up the road, see the ducks, play in the garden and just enjoy being at home.  She is doing utterly amazingly – running around, eating a bit more each day (still having her NG feeds too), and her language is really coming on.  Eloise has also really appreciated seeing some of her family (grandparents, aunts, uncles and cousins) in the garden when they have popped by.  But most of all she has just loved playing with her big sister Anna… as always.

We’ve now had it confirmed that Eloise will have Proton Beam Therapy planning next week.  We will travel up to Manchester on Sunday, with the first appointment starting at 7.45am on Monday morning.  We’ve been told to plan to be in Manchester for the week.  Eloise’s blood counts were good yesterday, and she will have more blood tests tomorrow – we hope these results show that she won’t require any transfusions tomorrow, so we don’t need to spend more time in hospital. Either way – we can still go up for proton planning on Monday (yay!).

How do we feel?

• Really grateful that Eloise’s proton planning has been confirmed and booked for next week.  It’s great to have it confirmed and not feel anxious about continued delays.
• Grateful and happy to have some family days at home (interspersed with community nurse visits, CPR training, telephone appointments etc).  It’s lovely to see Eloise doing so unbelievably well and see her character blossom again.  She’s still got a sense of humour….

For those that pray:

• Pray that nothing causes any delay from Eloise starting proton planning, and ultimately proton therapy.  For things to go smoothly over the next few weeks – for no infections, for blood results to be stable etc.
• Pray for protection against any growth/relapse.  Eloise will have an MRI on Tuesday (for proton planning purposes) – please pray this shows no growth/relapse, and that any ‘post-operative changes/scarring’ from surgery are the same and even improving!
• Pray that Eloise continues to grow strong, love life and keep fighting on!
• Please also pray for another family in the USA that we have come to know.  Savannah (Savannah be Strong) is one month younger than Eloise and also has an ETMR and her tumour is in a very, very similar location to Eloise’s.  Savannah is currently undergoing surgery to remove the tumour.  Please pray for this surgery!  All the prayer points that we’ve said before for us, also stand for this little girl and her family too.

Today Eloise went back into the Royal Marsden for some blood tests, a few other checks and to be discharged.  Disappointingly her neutrophil counts had dropped, so she needed another GCSF injection – but after a few hours of discussions, she was allowed home as ‘is otherwise doing so well’ (I was nervous when another night in hospital was suggested…). 

Unfortunately this has also had a knock-on for Eloise getting to Manchester for Proton beam therapy planning.  We have heard that this might be next week (Monday 17^th) but the Christie Centre in Manchester will only take Eloise if her counts remain stable and she doesn’t require another GCSF. Eloise has another blood test on Wednesday – so please pray her counts remain stable, so she can get to proton planning.

How do we feel:

Disappointed – we had really hoped to get to Proton planning this week.  We know that ‘days matter’ with ETMRs.  We are so grateful that she has been accepted for proton therapy on the NHS but feel disappointed that the system is not being flexible and can’t act faster when needed.  It doesn’t feel a very good use of resources to spend all the money on proton therapy, but fail to do the treatment at the opportune time.  We are obviously nervous that any delay increases her chance of relapse…

For those that pray:

• Thanks that Eloise is doing so well – she has been so full of life and energy.
• Pray that Eloise gets to Manchester for proton planning in the next few days.  Pray that Eloise’s counts are stable (e.g. blood test on Wednesday) and nothing stops her getting there as quickly as possible.  Ideally this week…but at the moment that doesn’t seem likely/possible.   
• Pray that the timeframe between proton planning and starting treatment is as minimal as possible.
• Pray for protection against relapse!

Eloise has had a really good week – her energy has slowly returned, as has (some of) her appetite and importantly her blood counts have improved. Also, much of Eloise’s zeal and character has returned!  She’s been walking around (even trying to run), playing with other children on the ward and even had a dance session to ‘Let it Go’ with a group of nurses!  She (read we) commandeered a rocking horse and put it outside her room – which she proudly rode whenever someone passed by (see pic below).  All in all, a huge improvement from where she has been – considering only just over 2 weeks ago she was in intensive care, and ‘wasn’t responding how the Doctors would like’….absolutely amazing.  To be honest, she’s actually the best she has been for months – chatty, confident and just desperately wanting to be a normal toddler (but recognising she has quite a bit of catching up to do)!

Due to her consistent good health and energy Eloise has wonderfully been allowed to go home for the weekend and will then be officially discharged on Monday. This is amazing news (and medicine for all) and somewhat surprising – given the average time to recover from high dose chemotherapy is ~ 6 weeks and Eloise has recovered sufficiently in just 3 and a half weeks (a week of which was in intensive care).  She will continue to need injections of GCSF and platelet and blood transfusions over the coming weeks, but as these aren’t needed every day and she is doing so well, we are able to go home!

The girls have adored being together today – they really have.  Anna has been getting the ‘best big sister award’ for carrying Eloise’s NG bag and moving it as needed, so they can happily play together freely.  Eloise continues to have NG feeds (but is eating small amounts as well) and has a ridiculous number of medicines, but she’s happy and getting stronger.  Eloise can say all the terminology ‘tube, medicines, flush, obs (i.e. for the nurses observations), wiggly, temperature,’ – she might not be great at naming animals/vehicles, but she knows a lot of nursing words!

Unfortunately we are still waiting to hear about when we will go up for Proton beam therapy planning in Manchester.  It will certainly be by the week of the 17^th, but our oncologist is hoping for it to be this week coming.  Please pray for this!

How do we feel?

• We are relieved to have made it through this hurdle! 
• Encouraged that Eloise is doing so well. She continues to amaze us (and health professionals) with how strong she is – we are so grateful for this, and it also means there is the possibility (stress – possibility!) of future treatment post-proton therapy, as she is so physically well.
• Grateful that we are all home under one roof.  We have cherished the times we’ve had together today.
• Disappointed we’ve not heard about when Proton therapy will start – but enjoying the time we have at home together in the meantime!
• Happy to be together, having got through another tough period – but equally knowing that the fight against this brutal ETMR is not over – and that relapse is still likely (and there being very limited/no treatment options for relapse).  It’s a fine balance to be grateful, hopeful, optimistic and faith filled, whilst also knowing the reality and severity of the disease.  That tension is very real.  But for today – we have enjoyed the day and never take it for granted!

For those that pray:

• Give thanks that Eloise is doing so well and is home! She hasn’t had any scarring (yet) from the thiotepa and is active and strong.  She continues to have no partial focal seizures.
• Give thanks that the girls have been able to see each other and play.  Anna has really loved this and has been brilliant.  She’s so happy to have Eloise home.
• Pray that we hear from Manchester and are able to get up for proton planning this week.  We really need Eloise to start proton therapy really, really quickly (within days really).
• Pray that the high-dose chemotherapy has done what it needs to do – killing any remaining cancer cells.
• Pray against relapse – relapse (or new ETMR tumours) can happen at any point, including during chemo/proton treatment, so please pray for protection against this.

Over the last few days Eloise has got much better! Her temperature and infection have gone, and she’s been getting stronger. She’s stopped being sick and is having a combination of IV feeds, NG feeds and eating some food.

She’s walking around (with stickman) and enjoying the playroom and garden. It’s lovely to see her singing and dancing again a bit too – she’s not done this for quite a while. It’s wonderful to see some of Eloise’s very cheeky and funny character return! We are so proud of her – she’s had to re-learn to walk several times in the past few weeks after her various operations/intensive care admissions, and she’s done it amazingly. Eloise was born physically strong and she continues to be. The lyrics from Chumbawamba’s Tubthumping ‘I get knocked down but I get up again, you’ll never gonna keep me down, I get knocked down, but I get up again…’ seems appropriate to sing!

That said Eloise does also get quite frustrated at being attached to stickman most of the time and many times simply wants all the line to be “off!”. She’s also getting very frustrated with nappy changes (that are ending up in tantrums – which when attached to stickman are quite difficult to manage) as she is sore from the chemo and needing changing so often. She continues to be brilliant and very brave for the nurses with all the daily injections, meds, obs, regular blood/ platelet transfusions etc. but nappy changes can be a real challenge!

The great news is that Eloise’s all-important neutrophils and white blood cell counts are up!! She’s no longer at zero (or even neutropenic) , so we are ‘on the way up’. In theory we are meant to stay in hospital at the Marsden with her until 21 days after her stem cell transplant (so another 10 days) to keep monitoring her – mainly because she’s at risk of VOD which has to be dealt with very, very quickly. But we are hoping to get to Manchester in the next few days/week for proton planning, and then return to the Marsden for any further recovery.

How do we feel?
We are so encouraged by how well Eloise is now doing. You’d never have guessed what she’s been through over the past couple of weeks… and months for that matter. What a little legend.

We are incredibly grateful her counts are on the up! We are really hoping to get her to Manchester ASAP…

We are doing a bit better having had a little more sleep (stress “little”, as hospital sleep is still tricky!) the past few days.

For those that pray:

• Praise that Eloise’s infection has gone, she’s stopped being sick and her blood counts are on the up!
• For Eloise to continue to recover brilliantly! Pray for protection against VOD.
• Pray for Eloise to travel to Manchester for proton planning really, really quickly – ideally in the next few days. To do this, her counts need to continue to come up, she needs to come off all her IV meds and feed (and keep her feeds/food down), only require blood/platelet transfusions every few days (rather than daily), and have no other infections/issues etc! She needs to be strong enough for another general anaesthetic too.
• Pray that it isn’t so uncomfortable for Eloise having her nappy changed and that she’s calmer for it. It’s a small prayer, but it’s making her quite frustrated as we have to do it so often.
• Pray that all this treatment obliterates any cancer!
• Praise that her partial seizures have continued to stop. Please pray she has no other seizures.
• Please continue to pray for Anna. And pray that Eloise and Anna can see each other soon. An hour together as a family would be amazing…

A few people have asked about our faith in the current circumstance, so we thought we would write a second blog today on our thoughts on where we see God in all of this. It might seem very difficult to imagine us seeing God in the midst of such immense pain – and there really is immense pain, but we have definitely felt God present with us throughout.

Disclaimer: This blog isn’t an attempt at a theological unpacking of suffering (there are plenty of other blogs that can do that). This is a marker in the sand of where we have seen God in this journey so far. A friend of ours kindly gave us a stone with Ebenezer written on it recently. This is in reference to 1 Samuel 7:12 in the Bible, which says: 

“Then Samuel took a stone and set it up between Mizpah and Shen. He named it Ebenezer, saying, “Thus far the Lord has helped us.”

This blog is our Ebenezer blog.

We also recognise our perspective of things may change later down the road, in a few months or years to come. We continue to pray in faith and hold firm to God’s promises for Eloise, however this doesn’t change the fact that ETMRs have extremely poor prognosis statistics.

Also for the record: We don’t believe that God wants this for Eloise – we believe that God weeps over the suffering she (and we) are going through. Sickness, pain, death and suffering are not the world that God intended. But we do believe that God promises to be with us in the pain, and that He can use the situation for greater purposes too. 

So where have we seen God in this journey so far?

• In her name, Eloise Zoe: Before Eloise was born, choosing a name for her was really important to us. We spent time praying and wrestling with God about what name we should give her and felt convicted to give her this name because of the meaning. The message we sent to family and friends announcing her birth stated ‘Eloise means warrior and Zoe means abundant life. We pray she fights for life in all its fullness for herself and many many others’. Little did we know how important and true this is. Every time we say her name we are declaring these things over her. We continue to pray she fights for life in all its fullness for others too!
• In a dream: On the day we unexpectedly found out that Eloise had a brain tumour, Mel had woken up early feeling disconcerted because of a dream she had. In the dream Mel was told by a Doctor that Eloise had 2 brain tumours and that they would need to operate to remove them. After Mel woke up she told Pete about the dream and we even messaged a few family members about it before we found out about the tumour from the Drs. Only a few hours later, we got an unexpected call to urgently come in and meet with the epilepsy consultant to discuss Eloise’s MRI – where she tells us that our precious girl has a brain tumour, and that surgery, chemotherapy and radiotherapy might be needed. Never before, and not since has Mel had a dream like this regarding Eloise. It felt like we lived out the day Mel had dreamt (except there only being one tumour!). As bizarre as it may seem, the dream actually reassured us and brought a certain level of peace – it felt like God was demonstrating to us that He knew what was about to happen and that He was with us.
• Being “Blessed” by the outpouring of prayers, love and support. Before all of this, Pete had felt for some time that we would be entering a season of ‘blessing’. This may seem like an odd statement at the moment, but we have been abundantly blessed with prayers, gifts, meals, love and care – including from many people we don’t even know. We would never have envisaged that the blessings would play out in this way, but we have clearly been blessed by family, friends, the church community, school community and many strangers, including the hundreds/thousands of people praying for us.
• In acute moments: We’ve tangibly felt God’s presence in a few very acute moments. For example, when they were struggling to control Eloise’s seizure after the biopsy/ETV surgery in January – Mel and Eloise (who knows the song) were singing ‘The Blessing’ in-between seizures. Despite the pain and chaos, we could sense God.
• In conversations with people: We’ve had the privilege of chatting to people (many of whom we don’t even know) on a much deeper level more frequently over these past few months. Pain brings connection – and we are grateful for this.
• In the surgery at Alder Hey: We still look back and think of the miracle of Eloise having surgery in Liverpool, where she received a Gross Total Resection. Having been told on a number of occasions by some extremely gifted surgeons that it would be almost impossible to remove all of Eloise tumour, we can’t help marvel at God’s timing of someone connecting us with a surgeon who said they could get all the tumour out (and did) at the 11^th hour before we needed to make the crucial decision on surgery.
• In Eloise being accepted for proton beam therapy. As far as we understand, Eloise is the first ETMR case to be accepted for Proton Beam Therapy under the NHS! On numerous occasions we have sensed God’s favour on us as Eloise’s treatment options. We pray and hope that this also helps pave the way for other children in the UK too.
• In warnings. About 10 days ago, Pete got the sense from God (that he didn’t have before) that the journey was “going to get worse before it got better”. Again, when Eloise had her large seizure last week that ended up with her in intensive care, it felt like God was going ahead of us to let us know that He knows all about Eloise and is with us.

There is much more we could say about God’s presence with us during this time. Despite the pain (every day we wish it would just be over for Eloise – and us all), we are grateful that no matter what, God is with us and God is with Eloise. 

As noted earlier, this is not a theological breakdown of “Why”, nor is it the end of the journey, it is simply a declaration of “Ebenezer” that God has been with us thus far. 

The last couple of days have been like a yo-yo.

Yesterday morning (Tuesday) Eloise seemed to suddenly jump back – she had taken her first steps, was walking round and wanting to play for a couple of hours. She had managed to nibble at a few things and her sickness had stopped. Eloise’s counts had bottomed out – her white cells and neutrophils are at zero. Everyone was amazed to see how she was doing after being in intensive care and in light of her treatment.

Today has been harder. Eloise temperature spiked and therefore had 2 antibiotics given immediately intravenously. She has been weak and was also very, very sick too.

Eloise continues on an unbelievable number of medications for various things. She has a daily GCSF injection (to boost her counts), and most days is having a blood/platelet transfusion. She’s on fluids, intravenous feeding and NG feeding.

Cancer treatment (particularly high-dose chemotherapy with stem cell autologous rescue) is such brutal treatment and it feels so cruel for little children to go through this… for months and months on end. Eloise’s treatment is on the extreme end of intense treatments – but still, it is awful for any child to have to go through this.

For those that pray:

• Pray the antibiotics are effective. We really really don’t want Eloise to get a serious infection/sepsis and desperately want to avoid another PICU admission.
• Pray for the sickness to end and for Eloise to feel better again.
• Pray for Eloise’s counts to come up – unexpectedly fast! She needs her counts to bounce up to be able to fight and get her strength up. And we need her to be strong to get to Manchester ASAP (hopefully in 10days – 2 weeks) for proton planning.
• Pray for Anna. Anna has found the last stretch particularly challenging. She’s missing Eloise and us both so much. She just wants to see Eloise and for us to all be at home for a day together… something so simple but impossible at the moment, and impossible for quite a while longer.  This all feels so unfair on her too.
• Please desperately pray this treatment does what it needs to do – that any cancer is completely OBLITERATED and NEVER RETURNS. We find it so horrendously hard to know that despite complete surgery, high dose chemotherapy and proton therapy (all of which we are grateful that Eloise is receiving) the vast, vast majority of ETMR children relapse and don’t make it through 1-2 years. It just seems so unfair on them all…