Red Letter Day!

This morning (Saturday) I was surprised and delighted by a phone call from Matt to tell me that Phoebe was being allowed out for an hour to the park opposite the hospital.  I have never been so thrilled to spend an hour in a park!  The sun was shining and the five of us got an hour of near normality – Phoebe even fancied a few licks of Rachel’s ice cream!

Phoebe’s isolation room overlooks the road and the park, and during the week Reuben and I had waved to Phoebe and blown kisses up to her at the window, but I never expected to be able to hold her hand or give her a cuddle as we sat on the grass.  She looked so sweet, unselfconscious in her head-covering made out of an NHS pillow case!

Our main concern this week has continued to be the tiny amount of food she is consuming; even the liquid nutrients going through her nasal tube get vomited back up so that her body is receiving very little nutrition.  But her spirits remain amazingly bright and she keeps busy with drawing, craft and school work.  She has an hour a day with a teacher, and is also being sent work from her school to help her keep up with what the rest of her class is doing.



Meanwhile Reuben continues to enjoy his mornings at nursery, and our afternoons together have included picnic lunches in the garden, scooting, football, games of Memory (which he wins easily!), jigsaws and playing with Bramble the dog.

Blessings and challenges!

We are very touched by the imaginative ways that people are finding to encourage and support Phoebe and all of us.  A friend of our friends (ie someone we don’t know at all) has sent some books for Phoebe to enjoy; local friends have invited Reuben to come round to play; someone in our Life Group worked in our garden yesterday and replaced some of our many weeds with beetroot plants!  Matt’s brother-in-law’s parents drove to Sheffield from Cardiff bringing delicious cakes and cooked and shared a meal with us.  A dear friend from Guildford who was in Sheffield with her student daughter popped in for a cuppa on Sunday.  A supporter of the Good News Project in Mandritsara has sent a book he hopes will encourage Rachel and Matt.  These expressions of love and concern really do hearten us and give us the courage we need to live through these difficult days.

On Monday when Rachel got home from the hospital, Reuben greeted her with behaviour that appeared designed to “punish” her, the first time he’s shown any outward sign of feeling troubled by his unusual new life.  He is only 3 so doesn’t have the words to articulate his fears or confusion.  Please do pray for him, and for wisdom for me and his parents as we try to explain to him why things have to be as they are even though it’s not what we would choose. 

First Round Complete

The best way to update you with how the last week has gone is to quote from Matt and Rachel’s Facebook entry:

Phoebe passing time in hospital before isolation began

Today was the last day of cycle #1 of Phoebe's chemo. She had a mixed week with several very good days and a couple bad days. Today she had pain in her joints from the final dose of chemo they gave her and from the build up of GCSF (Granulocyte-Colony Stimulating Factor) injections she has had over the last 3 days. GCSF makes her body's bone marrow produce more white blood cells and boosts her immune system.

Her platelet count is now dropping and dipped below 50 yesterday (yours and mine would be between 200-400!). This means her immune system is now weak and will probably get weaker throughout this week before it begins to climb again. As a matter of precaution she is now on antibiotics to help fight off any potential illnesses which will begin to attack her now that her body's defense system is down.

Please continue to pray for her and us. Thank you to all of those who have so generously been providing us with meals.

Specific things to pray for:

- Phoebe not to get any secondary illnesses. Not only would this set back when she can have her next dose of chemo it could potentially be life threatening.

- Rachel and I to have continued wisdom in parenting her and Reubs.

- For Phoebe to have minimal side effects from chemotherapy, both short and long term.

- For Phoebe's appetite and taste buds to settle down to normal again. This is highly unlikely while being treated but eating/drinking are often a battle, even when given through her nasal feeding tube she still vomits them up. Drs are working to combat this but she needs calories and nutrients to help her get better!

- For Phoebe and us to not go stir crazy in her room!

Big hugs to you all! We miss life's normality and wish we could see more of our friends and family!

Isolation Begins

While Marcus is away in Madagascar his technically challenged wife won’t be able to supply up to date photos for the blog I’m afraid!  Our son Jon is posting the updates for me, and will add photos he already has on file.

Since the chemo began Phoebe has been even less interested in eating than she was before.  On Sunday she fancied a rhubarb muffin – but by the time her school friend’s kind grandma had baked them and the friend and her mum delivered them to the hospital, she didn’t want one after all!  Never mind, Phoebe enjoyed waving and blowing kisses to Evie through the window.

Helen, who used to look after Phoebe one day a week when she was very young and is a dear friend of the family, went in to be with her on Sunday morning so that Matt, Rachel and Reuben could all be in church together.  Singing great songs about our salvation and the hope of heaven, and hearing Phoebe prayed for, always brings tears to our eyes, but it is so good to be with our Christian family and be reminded of the truths which sustain us during these difficult days.  Helen will also sleep in with Phoebe two nights a week to enable Matt and Rachel to have some time together.

Rachel wrote today:
Phoebe had a cheerful day yesterday, (Sunday) much less vomiting thankfully and a good night's sleep last night. Today she will be given her stem cells back and we move into the isolation room due to lack of immunity. Please pray against infections & secondary illnesses during the next few weeks. She has also been fitted with a NG feeding tube, it was an ordeal getting it in and she's sad about it, but hopefully she soon gets used to the feel of it and it relieves the pressure on us constantly trying to encourage her to eat and drink.


Mean while Reuben and I are getting along fine together, and we are all enjoying the lovely meals supplied by our church friends.

Chemo - First day completed!

Don’t worry, we don’t intend to give you a daily digest for the rest of the year!  But we thought you’d like to know that Phoebe’s first day back in hospital to start chemotherapy has passed well.  

The drugs are administered via lines attached to the “wigglies” that were inserted into her chest months ago, and she has coped well today.  She is on the oncology ward at the children’s hospital, not yet in isolation, so Grandma was able to call in as well as Mummy, Daddy and Helen (who is a close friend of the Lollars and will be one of the four adults permitted to see Phoebe when she is in isolation).  

Meanwhile Reuben went back to nursery and spent the afternoon with Grandma cheerfully enough.  Matt had surgery on his elbow today, just to add to the mix!  He needed some repair to an old injury site.

We are very aware that lots of people are praying for Phoebe and all of us, even people we’ve never met, and we do feel the benefit of this support.  

There is a long road yet to travel but today’s first steps have gone well.

Update about Phoebe - 10 June

Yesterday morning we received a phone call from Phoebe asking if she could spend the night at our house. She had been told that she would not see us very much while she was in hospital. She came about 7pm, allowing some bedtime stories. This morning we had the joy of cuddles in bed before we had to get up for breakfast. 


Rachel and Matt have recently made this entry on the 'PrayForPhoebe' FaceBook page.

We just put the kids to bed together for the last time in a long time. Phoebe's chemo starts tomorrow & life is going to be very different for the next 6-12 months. I feel sad but I pray that our Lord Jesus will heal Phoebe through the chemo & will help these next few months go as quickly & painlessly as possible for all of us. Please pray for us when you think of us, especially for Phoebe.

Pray specifically for:

- The cycles between chemo to be faster than anticipated. This will only happen if she heals faster than expected.

- Fewer chemo side effects than expected.

- Us to be able to make good memories and forget the dark days throughout his process.

- Us to find joy in Jesus and the hope of eternity with Him!

- Rachel's & my marriage as the next few months will be difficult as we pass each other often & see each other little.

- Reuben as he copes with not seeing/playing with Phoebe and as he is juggled about between Rach, me, grandparents and friends.

- For the Holy Spirit to comfort us and for us to sense God's nearness.

- For all of our family who aren't able to be with us through this time. It's very difficult on them to be far away from Sheffield.

- Most of all pray the chemo does its job and kills all the cancer in Phoebe's body.

Thank you for ongoing concern and prayers for Phoebe and the family.

Blog changes

Hello! we have decided to split our blog into two parts. The original blog (cullis13.blogspot.co.uk) will continue to be about us and our involvement with Mandritsara. You can also access it by going to www.marcusandjen.org.uk. Those who originally subscribed to get this by email will continue to do so, until you 'unsubscribe' at the foot of the emailed blog entries.

We have created this new blog for Phoebe. It has copies of all the previous blogs about Phoebe. We are now aware that news about Phoebe will be ongoing, and it makes sense to have a dedicated blog. You can access this by going to www.prayforPhoebe.org. 
If you want to continue receiving email updates about Phoebe you need to type your email address in the top right hand corner of this page. You will receive an email to confirm this, which you must respond to.

Thanks for all your interest and concern. 
Marcus and Jen

Another sunny holiday

It was a real joy to join the Lollars for their unexpected holiday on the Lincolnshire coast.  The weather was mostly sunny so we could go to the Seal Sanctuary, the children could scoot and enjoy the rides in the little funfair on the Haven site and play in the local park.  One evening the four of them went bowling after the children’s usual bedtime – great excitement!

However we did get a better insight into Pheobe’s daily struggles with vomiting, tiredness and very little desire to eat.  Despite all the missed schooling she is doing well with phonics and reading which she does with Rachel every day.

At the end of the week they went on to Lincoln for two nights’ B&B at the home of the grandma of Phoebe’s best friend from school, while we returned home.

We have been amazed at the number of charities we have come across since entering the world of childhood cancer.  Our holiday caravan was provided by Ben’s Den, set up by the family of a boy who had leukaemia.  The garden centre where we stopped for tea on the way home was supporting The BrainTumour Charity.  The Sheffield Children’s Hospital has its own charity and is helped by several others providing accommodation for parents, bags of craft items for children, teddies to help staff explain medical procedures … the list goes on … what wonderful examples of God’s common grace in difficult circumstances.

Thursday 11^th June is the day  Phoebe will start her chemotherapy treatment.  We don’t know yet exactly how life will pan out for us all, but we are expecting her to be in hospital almost all the time for the rest of this year, with Rachel and Matt with her during the day and alternating staying with her at night.  Our focus will be caring for Reuben; children are not allowed to visit a child in isolation so there will be long periods when he is unable to see his sister.  We will need great reserves of imagination, energy, patience and wisdom to understand his needs, keep the discipline boundaries he is used to and provide the emotional support he will need in addition to fun, exercise, learning and treats that the normal life of a 3 year old involves.


Jen will be “flying solo” in this for the first five weeks while Reuben attends nursery each morning until the end of term, as Marcus will be away in Madagscar seeking to support and encourage our friends there.  Happily his visit coincides with the celebrations of 20 years since the project began.

Our holiday and Phoebe's chemo

Our time away was everything we hoped for.  

It was great to spend time with Marcus’s brother and sister-in-law as well as other relatives, and then to have a quiet week in our friends’ lovely house in St David’s.  A real bonus was the sunny weather (we weren’t expecting that in west Wales!) which enabled us to enjoy walking the coastal path, pottering in little villages and finding benches on which to sit with our books.  As we are National Trust members we tend to look out for places to visit to break long journeys, and this time took in an old manor house, the remains of a tin-plating factory with a wonderful waterfall, and extensive parkland surrounding a decaying house!

Now we are back in Sheffield and glad to be reconnecting with church and family.  Phoebe and family had a great holiday in Scotland with the excellent facilities and meals provided by the CLIC Sargent charity.  This week she’s been back in hospital for more stem cell harvesting so that there is plenty in the freezer ready to give back to her during the chemo treatment.  We are amazed at how well she has coped thus far with all the medical interventions she has undergone and pleased to see that her back has healed well from the skin damage caused by the radiotherapy.  She was recently in contact with chicken pox at school so her oncology consultant has taken the precaution of delaying the start of the chemotherapy which was scheduled for 1^st June.  

The chemo is now due to begin on 11^th June.  Rachel and Matt have decided to keep both children away from school, nursery and church to minimise any further risk of infection, so they are hoping to go away if they can find a cheap or free place to stay.  
Any ideas?!

Some time off

Matt’s parents, Bill and Sheri, are over from Florida to spend almost a month with him and his family.  How hard it has been for them to be so far away while their son has been going through such a difficult time.  Like us they have been very touched by the kindness of strangers, having had their air tickets funded by a church where they know just one of the members.  It was lovely to have them over for a meal and to share our concerns and pray together.

This morning we saw this photo on Facebook – Reuben has decided to sport the same hair style as his sister!  Hopefully the Scottish weather won’t be too cold for them on holiday!


This week we’ve not been “on call” as Bill and Sheri have had that privilege, and as a consequence Jen has felt extremely tired and Marcus has a stye on his right eye!  Perhaps our forthcoming holiday will enable us to regain our energy – we certainly hope so!  As well as a week in St Davids, we are visiting various members of Marcus’s family including aunts and uncles in their 80s, 90s and nearly 101!  That will help us to feel rejuvenated won’t it!

On three recent Thursday evenings we have been on a 'Mission Minded' course, run by Christ Church Central here in Sheffield, thinking about how we can continue to support mission both in our church here and our friends in Mandritsara, Madagascar. Once again we have been very challenged by how much some are willing to give up to share the good news of Jesus with others.

Counting our blessings

We would never have chosen for our precious granddaughter to have to undergo the huge trials she has faced and will continue to face in future, but they have been the cause of unlooked for joy and blessings as well as the inevitable pain and heartache.

 Word Alive with Reuben and our friends from Stevenage was a lovely time of relaxation, fellowship and Bible teaching that did us good in every way.  Despite not knowing anyone there apart from us, Reuben went off to his age-group activity very happily, and spent the rest of the time charming our friends and enjoying scooting, climbing, ball throwing and a freezing cold half hour on the beach!


Jon, Heather and Rosanne came to stay last week and we enjoyed trips to the park in beautiful sunshine, meals with the 9 of us round the table, Phoebe staying for a sleepover at our house with Rosanne (more “over” than “sleep”!).

Last Sunday saw the Sheffield half marathon in which about 20 people were “running for Phoebe” to raise funds for the oncology ward at the Children’s Hospital where Phoebe will spend the second half of this year undergoing chemotherapy.  With a goal of £5,000 they raised over £7,000!  After our church morning gathering we took Phoebe and Reuben along to cheer the runners on their way and were very moved to see them go past with her name on their vests, amid many others raising money for equally poignant causes like a children’s hospice.  Later most of “our” runners went back to Rachel & Matt’s for lunch.  It was a day of great achievement and great joy.

Phoebe finishes her radiotherapy tomorrow (!) and then has a few weeks’ break from treatment (apart from more stem cell harvesting as not enough were produced when this was done before).  During May her American grandparents will be visiting and sharing a week’s holiday with Rachel, Matt and the children courtesy of the CLIC Sargent charity.  We are taking the opportunity at that time to go away ourselves; kind friends have offered us their holiday house for a week when we hope to read, walk, rest and gird up our loins for the long haul of the chemo phase when we will be Reuben’s main carers.


We feel the kindness of God to us through all of this – strangers who donate to charities, friends who share with us God’s bounty to them, cards to remind us that people are praying …our lives are loaded with benefits.

Update - 21 March 2015

Although we don’t have any major news for you (which is a good thing!) we thought we’d update the blog as people often ask how things are going if we leave it too long between posts!  We have been very touched by all the cards, emails, texts and phone calls – we value each one as it reminds us that so many people are supporting our family and praying for us all.  We have had messages from people we don’t even know, and last Sunday evening Jen was chatting to a lady who said “oh, we’ve been praying for a little girl called Phoebe, but we didn’t know who she was”!

It is strange how quickly we have all got used to our new way of life.  Phoebe goes each weekday morning to the cancer hospital for radiotherapy and usually spends part of the day at school if she feels well enough.  There is a wheelchair in the hall, containers of “meds” on top of the microwave,  a wig has been fitted.  Phoebe’s hair looks lovely in her new bob haircut but she is getting ready to lose her hair which she will find really hard.

Meanwhile 3 year old Reuben plays and chats his way through life, sometimes at home with Rachel and Phoebe, sometimes with us, sometimes at toddler group or nursery.  After Easter he is due to go to nursery for 3 hours each weekday morning.  He enjoys the familiarity of the toy box at our house, the park just over the road, and on Fridays taking Grandma to play with Ned, a friend from church who lives a few doors away from us.  He likes Grandpa to read him a story before and after his after-lunch nap!

During February when Phoebe was an inpatient and we were staying most of the time at the Lollars’ home, Marcus did very little of his usual work as trustee and treasurer of Friends of Mandritsara Trust.  Now we are based back at home he has been able to catch up again and is gradually getting the paperwork back under control – if he is not required for reading duty!  He is planning to go to London for the Friends of Mandritsara Prayer Day on April 25 at Tooting – if you are in that area, you are very welcome to go along and be encouraged by the latest news from the hospital and associated projects.

Some very kind friends from our church in Stevenage have invited us to share their chalet at Word Alive, a Christian holiday conference in North Wales.  Reuben is included in the invitation so on Saturday 28^th March the three of us will be off to enjoy a 5 day break together – it’s great to have something so positive to look forward to!

Phoebe - update 11 March

It is now a week since our last update, and Jen and I are living back at home.

Phoebe after 2 days radiotherapy
- with Uncle Jon

Phoebe started her radiotherapy treatment on Thursday 5th March. 
You may find this Youtube video "One of a kind! A guide to radiotherapy" helpful - click here. It is designed for children to view.

On Saturday Phoebe had her hair cut in anticpiation of it falling out in the next week or so, which will be a sad time for her. But Matt has been teaching her that real beauty is on the inside, and does not depend on pretty hair and dresses, but our character and our heart attitudes.

On Monday (9 Mar) morning Matt wrote on the #PrayForPhoebe Facebook page as follows:

On Saturday morning we were discharged from the oncology ward and have enjoyed a weekend together at home along with Rachel's brother and his family. It's lovely being home.

Monday-Friday we go to Weston Park Cancer Hospital at 8:30am where Phoebe has radiotherapy. This morning she had her 3rd session & has 28 remaining.

If radiotherapy goes well and Phoebe doesn't have any severe short term side effects, we should be able to stay at home until chemotherapy starts in June. We expect there will be set backs along the way and even little things such as a cold/fever could find us back on the ward for a night or two but we are hoping and praying we will be home as much as possible.

Thanks for all of your continued support. We can't tell you how much you have helped us to get through this process so far.

Big hugs!

To show their appreciation for the excellent care that Phoebe has received from the staff at the Sheffield Children's Hospital Rachel and Matt are encouraging people to run in the Sheffield Half Marathon and raise funds for the hospital charity - http://www.tchc.org.uk/.  If you would like to sponsor someone running for Phoebe please click here to find the Just Giving pages or go to the Facebook page #RunForPhoebe.

This morning we accompanied Rachel, Phoebe and Reuben to the Weston Park Cancer Hospital. Phoebe ran into the hospital! Jen went with Phoebe and Rachel, while Marcus read books to Reuben in the waiting room. Apart from the time when she was on the radiotherapy machine with her mask fitted she did very well. So she has now had 5 treatments, leaving 26 to go.

Thank you for your prayers and concern for us all!

Phoebe update - 4th March

Phoebe has made a good recovery since the removal of the tumour a month ago. But as Phoebe starts the treatment phase tomorrow we naturally feel concerned about the significant side effects this could cause. 

Today Matt writes on the Facebook page '#PrayForPhoebe':

Stem cell harvesting has gone well & today will be the last day.

Please pray for us as radiotherapy starts tomorrow. Common short term side effects are tiredness/fatigue, hair loss, nausea/sickness, itchy skin, thin skin, skin discolouring, sore throat, headaches.

Although the short term side effects aren't pleasant, they pale in comparison to the long term ones. Common long term side effects are hormone failure, thyroid deficiency, infertility, reduced IQ, memory loss, secondary cancer from radiation, stunted growth in spine, cataracts, dry mouth.

Almost all of these side effects can be combated with medicine/surgery but it means a life of medical issues. It doesn't mean a life without joy or happiness though.

It's hard for us to grasp but we grieve at these lists, especially the long term side effects. Please pray boldly that Phoebe would be the exception and wouldn't have to deal with these. Pray for us as we cope with all of this. Pray our joy would remain firmly in the hope we have in Christ our Saviour.

Big hugs!

Phoebe - update 3rd March

Today we are one month on from the day Phoebe was diagnosed with her tumour; in some ways it seems like a year. A month ago we had 100 hundred people receiving this blog by email. When I last looked is was 130. We started this blog originally to write about our visits to Mandritsara in Madagascar and the great work going on there. Consequently, I had expected the number of people receiving the blog to decrease as we changed to focus on Phoebe. So thank you very much to those who have stayed with us and to those who have joined us!

Our son-in-law Matt has just written the following update on the last few days.

After 4 lovely days at home we are now back in the Sheffield Children's Hospital, this time on M3 Ward.

Over the last few days we've had lots of cuddles, enjoyed trips to cafes, played lots of games (snap!), watched plenty of films, broke up a couple sibling spats and enjoyed the momentary pretence that our lives were normal again.

Today Phoebe is going to have her stem cells harvested. She will be attached to a machine most of today and tomorrow which will take her blood, separate the stems cell from it and pump remaining back into her body. The stem cell will be kept frozen and given back to her after each dose of chemo in June when it begins.

Pray for us today as PJ (Phoebe Joy) has to sit still for several hours while the machine does its work. Pray that we get to know nurses and other families on this new ward quickly and make new friends. Pray for us as we begin the long treatment process to cure PJ from her cancer. If all goes well with the harvesting, radiotherapy will begin Wednesday.

"Have you not known? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the LORD shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint."

Isaiah 40:28-31

Big hugs!

"We have a shelter in the storm" !

Last Sunday (23 Feb) we had the following song which was so appropriate for us. It has felt like being in a storm these past three weeks, but we have been kept safe through our faith in Jesus.

We have a shelter in the storm,
When troubles pour upon us
Though fears are rising like a flood
Our souls can rest securely
O Jesus, we will hide in you
Our place of peace and solace
No trial is deeper than your love
That comforts all our sorrows.

We have a shelter in the storm
When all my sins accuse me
Though justice charges me with guilt
Your grace will not refuse me
O Jesus, we will hide in you
Who bore our condemnation
We find our refuge in your wounds
For there we find salvation.

We have a shelter in the storm
When constant winds would break us
For in our weakness, we have learned
Your strength will not forsake us.
O Jesus, we will hide in you
The One who bears our burdens
With faithful hands that cannot fail
You'll bring us home to heaven.

By Steve Cook, Vikki Cook, Bob Kauflin
© 2008 Integrity’s Hosanna! Music/Sovereign Grace Worship (ASCAP)/Integrity’s Praise! Music/Sovereign Grace Praise (BMI)

You can listen to this on Youtube:- https://www.youtube.com/watch?v=cSxdqIEJ13Y

Phoebe - update 23 February

After having Phoebe home for the weekend today has been a sad day for us all. Rachel and Matt met with Phoebe's oncologist. They have put the following message on #PrayForPhoebe Facebook page:

We've just been to see Phoebe's Paediatric Oncologist for the final histology of her tumour. Phoebe has Anaplastic Large Cell Medulloblastoma, which is the more aggressive type of tumour. Being more aggressive doesn't mean it's less likely to cure but does mean it has a higher chance of reoccurring.

This is very sad news for us but there was some good news, the lumbar puncture revealed that there are no cancerous cells in her Cerebrospinal fluid.

All of this means Phoebe is going to require much more aggressive chemotherapy than if it was classical Medulloblastoma. Her chemo will be so aggressive that she will spend much of a 6 month period in isolation. The next year is going to be very hard on us as a family, especially Phoebe (and Reuben!), so please keep praying.

Every bit of bad news is painful to hear, but we are not despairing. We believe our Heavenly Father is in total control of this situation and is actively working for our good, even though we can't see how right now. We trust Him, love Him and find comfort in the fact that He can sympathise with us in our suffering because He too watched His child suffer.

During the isolation periods during Phoebe's chemo treatment she will only be able to have four adult visitors. Please pray for Rachel and Matt as they decide who the other two people should be.

But Phoebe continues to amaze us with her bravery. Here she is having a hot choclate drink at the Starbucks next to the hsopital!

Thank you for your prayers.

Phoebe update - 18 February

This morning Matt wrote the following on the #PrayForPhoebe Facebook page:

"Phoebe seems to be doing very well. Her motor skills continue to be an ongoing struggle but are slowly getting better with practice/Physio. Here are some specific things we'd like prayer for this week.

1. No infection - with every surgical procedure comes the risk of infection and infection could be a major setback for the start of Phoebe's radio/chemotherapy. Please pray her wounds from all three surgeries heal and she continue to be infection free.

2. Chemo line installation - Next Tuesday Phoebe will undergo her 4th surgical procedure to install a line through which her chemo will be administered.

3. Going home - the team of surgeons, physios, oncologists and nurses are beginning the conversation about when we might go home. The timescale we are aiming for is this weekend. The surgical wounds are the things which impact most on this decision. They must remain clean, dry and infection free in order for us to go.

4. Radiotherapy Prep - this week is quickly filling up with prep for radiotherapy treatment. This involves explaining/showing Phoebe the process and equipment, making a mould/mask which she will wear everyday during treatment to keep her head as still as possible so therapy can be as accurate as possible, meeting the team of staff administering it. The hope for all this prep is that she is comfortable enough with the process so that she lies still (20 mins) throughout each radiotherapy session. If she wriggles/moves they will have to sedate her which only adds to complication.

5. Lumbar Puncture - tomorrow Phoebs has this procedure scheduled and is a very important procedure as this will give us the grading of the Medullablastoma which in turn will dictate which type of chemo she has and for how long (9 or 12 month!). Please pray for a lesser grade. Because Medullablastoma is an aggressive form of cancer and aggressive treatment must be put in place. The lesser grades are still more aggressive than other types of cancer so we are praying for a lesser prognosis.

As always, thank you all for your prayers and messages."

Phoebe - reflections two weeks on

It is now two weeks ago (on Weds 4th February) sincePhoebe had the tumour in her brain removed. In these two weeks we have been amazed and impressed by:

• the skill, concern and care of the staff of the Sheffield Children's Hospital staff: surgeons, doctors, nurses, play specialists, physiotherapists, etc. We keep saying thank you to them!
• our God's gift of peace and an assurance that He will work out His purposes for His glory and also our overall good. Phoebe has been so strong and brave through this in an extraordinary way. Thank you, Lord!
• the many prayers of people around the world and for many expressions of practical concern, including the many meals supplied (and the freezer is full) and other acts of kindness. Thank you too!

In the first few days it seemed odd that people could be carrying on as normal when our lives had been so impacted by Phoebe's illness. Yet as we stand back we realise that the events we are experiencing are being repeated again and again in the UK and other countries. We are not unique. So the love and prayers we are receiving is all the more remarkable, when there are many others in need to love and care for too. Added to this, we are very conscious that in many countries, such as Madagascar, the sort of care that Phoebe is receiving is beyond the dreams of the doctors let alone the patients. 

This morning Marcus was reading from Psalm 71, including these words:

"For you have been my hope, Sovereign Lord, my confidence since my youth." (verse 5) and "Since my youth, God, you have taught me, and to this day I declare your marvellous deeds." (verse 17)

Our testimony is that the God who we first knew aged 11 and 12 is also the God who now sustains us at 60 and 61. 

Phoebe update - 14 February - further progress

In the last couple days we have seen little steps forward from Phoebe's brain surgery, for which are so grateful after being told that Phoebe will require both radiotherapy and chemotherapy. These small steps forward are encouragements as we prepare for the coming treatments.

We have been encouraged by friends with words such as:
"But as for me, it is good to be near God. I have made the Sovereign Lord my refuge; I will tell of all your deeds." (Psalm 73:28)  These steps forward are some of God's good deeds to Phoebe and the family.

Yesterday Rachel and Matt wrote:

Phoebe's surgical procedure to remove the tube from her brain went very well and she is now completely tube/line free! This means we are doubling up on the cuddles as we haven't had many for the last 11 days. Another answered prayer. ‪#‎PrayForPhoebe‬

Tube free!

Yesterday Matt wrote:

There are some specific things we'd like to ask you to pray for:

1. Phoebe's mental well being. Despite the smiles & happy photos we post, she is often tearful & sad. She has cried several times and said "I'm scared of what's happening to me."

2. Phoebe's motor skills. The right side of her body isn't working as good as the left and the left isn't working normally. She can't walk on her own and struggles to hold small things. She can't write and her speech is slurred. These things also feed into her mental well being. Things should return to normal with practice and Physio.

3. Today's surgical procedure to remove the tube from her head which was attached to the EVD. This was scheduled for this morning but has been pushed back to this afternoon.

4. Reuben's emotional wellbeing. The amount of time Reuben has been away from Rach & is starting to get to him. In general he is very happy with Grandma & Grandpa but he does miss us a lot.

On Thursday 12 Feb Matt wrote:

We've had some lovely news today, our prayers have been answered and Phoebe will not need the cerebral shunt. The doctors had her booked in for an 11am surgery this morning to put the shunt in because her brain's drainage system wasn't working. As of yesterday morning it has worked beautifully and there is no longer the need for the shunt! ‪#‎PrayForPhoebe‬ 

Facebook group for Phoebe

Matt has created a Facebook group #PrayForPhoebe where he and Rachel will post up to date news, for those of you with Facebook. We will continue to add updates from time to time here.

Thank you all for your concern and prayers!

Phoebe - Update 11 February - My flesh and heart may fail, but God ...

 Psalm 73:26 "My flesh and my heart may fail, but God is the strength of my heart and my portion forever."

While Rachel and Matt met with the oncologist yesterday Jen and I had a lovely time with Phoebe. She had more smiles than the past few days. We also read stories with her. It was a precious time. Once again we were blessed through helping Rach and Matt.





Below is the text of an email sent last night to all the members of Rachel and Matt's (and our) church.

"Thank you all for your love, support, prayers and messages over the last week. Today we have received the results of the analysis of the tumour that was removed last week from Phoebe during her brain surgery. Sadly, it has revealed that she has a type of cancer called Medullablastoma. This is an aggressive form of cancer that affects the brain and spinal chord. The doctors are confident that they have removed the entire tumour but it is likely that some cancer cells still remain in her body.

As a result, Phoebe is going to have a lumber puncture next Thursday to remove spinal fluid. This will allow the doctors to determine the spread of the Medullablastoma and its particular type strain.

In order to treat the Medullablastoma Phoebe will undergo aggressive radiotherapy and chemotherapy. The radiotherapy is planned to start on 5th March and will take place five days a week for five weeks. The chemotherapy may start after this and last nine months or, if it is a particularly aggressive form of Medullablastoma, it will start at the same time as the radiotherapy and last twelve months. Either way, her treatment will last about a year and is curative treatment rather than palliative. This treatment is going to be extremely difficult on Phoebe and the doctor has reassured us that she would not be put through this if they didn’t believe she could be cured.

The pressure on Phoebe’s brain following the operation is improving and her wound has not leaked today. The external ventricular drain has been switched off. If there continue to be no leaks and no headaches then they may not need to fit a shunt to drain the fluid internally. But this is still a possibility.

We are continuing to trust Father God. We know he is good and that he is working good through this situation but often it is difficult for us to ‘feel’ that what is happening is for Phoebe’s good.  As ever, we covet your prayers. This last week has been a rollercoaster with every high and low of emotion.

Please continue to pray for us throughout this journey.

Matt and Rachel "

Phoebe - update - 10 February

This afternoon Rachel wrote:

"It's now been a week since we received the devastating news of Phoebe's brain tumour. It still feels unreal, and yet strangely it is far more normal to be at hospital than at home. We've had no time to process any of this, and are constantly bombarded with more information, choices, problems. The current issue is that there is still excess brain fluid which is being drained off by an external drain but this is only a short term fix and if the body can't start to regulate it she will need a further surgical procedure on Thursday to have a shunt fitted, a permanent internal drain. The heartache continues, and if anything, only gets worse. As ever, we need your prayers for Phoebe."

A man on his bottom!

While all this goes on Phoebe's little brother, Reuben, continues life in the care of Grandma and Grandpa, visiting the Weston Park museum, going to nursery and toddler group, visiting friends to play and have lunch. We are so pleased that most of the time he is doing so well. Each day he visits Phoebe, but is blissfully unaware of the severity of her situation. 

In various places in the hospital and at the museum opposite we come across this yellow plastic sign. To us it's a warning that the floor is wet and slippery, but to Reuben it is just a man sitting on the ground and causes some laughter!

Up to now we have tried to give an update every day. We now recognise that it will be a long haul and that the situation may not change much from day to day. So we will reduce the frequency of these blog updates. However, as Rachel says, we continue to seek your daily prayers.

We thank God for your concern for Phoebe and us all.