Our "new normal"

Now that the school term is well underway we are all used to our “new normal” – until the next change comes along!  Matt returned to full-time work for the first time since Phoebe’s diagnosis last February.  His employers, BirchenallHowden Ltd, have been wonderfully supportive and generous.

Pyjama day!

Phoebe now attends school for four mornings a week, with Wednesday as her pyjama day.  She has a sleep every afternoon and is gradually gaining strength, greatly helped by the return of a healthy appetite.  It’s such a joy to see her tucking into food instead of being persuaded to eat a tiny morsel.  She tries to drink plenty of water as her kidneys were damaged by the chemotherapy.  There is still no sign of a physiotherapy appointment.

Reuben continues with nursery every morning and swimming lessons on Monday afternoons.  Jen looks after Phoebe while he swims, and Marcus does the honours with her on Wednesday mornings while Rachel walks the dog and then goes for a run.

SCH runners in the 2015 Sheffield half marathon + Phoebe!

Last April quite a few of Matt and Rachel’s friends ran the Sheffield half marathon, to raise funds for the cancer ward of the Sheffield Children’s Hospital (SCH) where Phoebe spent so much of the year.  This time Rachel and Matt are training for it themselves and plan to run in Phoebe’s honour.  If you would like to sponsor them, please go to JustGiving.


Rachel and Matt have booked to take the children to visit Matt’s family in Florida in March.  They were shocked by the price of insurance for Phoebe – most companies would not even consider insuring her.  This is another aspect to the “new normal”.  But it will be a great boost for them to have this holiday together, and wonderful for Matt’s parents and sisters and their families to spend time with them.


We do thank you for your ongoing interest and support for us and our family.  One Christian friend has sent Jen a text every day since Phoebe was diagnosed last February, and continues to do so.  We have learned how dependent we are on others to encourage and comfort us – in other words to spur us on with courage and strength – and we are not embarrassed to say so. But our greatest source of hope and strength continues to be our Father God.

Marcus and Jen
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Yet we also know that our journey with Phoebe is being repeated again and again in other families around the world, and that other people and situations may become your new focus and concern. If you no longer wish to receive these updates, simply click on the 'unsubscribe now' link at the foot of this email. Thank you.

Into the New Year

We know that many of you continue to pray for Phoebe and the family, for which we are extremely thankful.  Although we have celebrated the end of her treatment, life does not just go back to the carefree pre-cancer days of last year and we will all need your ongoing support as we enter this new year.

Phoebe has continued to eat better and her energy levels are slowly improving.  She is still quite unsteady on her feet, something which we hope will get better when she is able to start physiotherapy and hydrotherapy – it would be great if that is sooner rather than later!  She recently had a chest infection and was unfortunately allergic to the anti-biotics, not something that was an issue before.  Her skin became very red and itchy and one evening Matt & Rachel resorted to giving her cold bath of oatmeal, just like they had to do for her in hospital.  We had thought those days were behind her.

Some of Phoebe’s hair is growing back, but it is patchy; it seems that the large bald patch on the back of her head (where the radiotherapy was directed at the site of the tumour) is going to be permanent.

A visit to Millhouses Park

We have spent a very happy couple of days together over Christmas; we can’t say how thankful we are that she was not only with us to celebrate the coming of Jesus into the world as a baby, but that she could enter into it all with enthusiasm – being an angel in the school nativity, enjoying a pantomime at school, having family and friends visiting at home.

She will continue with part-time attendance at school as the new term begins, and of course there will be clinics and check-ups for a long time ahead.  On 30^th December she will be 6 years old (and hopes to celebrate by going swimming!) and on 4^th January Reuben will be 4.  What a lot they have both had to contend with in this past year!


Marcus and Jen
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Yet, we also know that our journey with Phoebe is being repeated again and again in other families around the world, and that other people and situations may be your current focus and concern. If you no longer wish to receive these updates, simply click on the 'unsubscribe now' link at the foot of this email. Thank you.

Rejoice with us! - and our own dancing show

The Bible teaches us to 'weep with those who weep' and to 'rejoice with those who rejoice'! We are so thankful for those who have wept with us this year, and now hope you will also rejoice with us!

Phoebe has now been home for eight weeks! In this time she has continued to make slow but steady progress in her return to normal life.  Her previous almost non-existent appetite has grown so that she is now having small meals plus snacks, and even saying “I’m hungry”!  After having to coax her to try even part of a biscuit before, this is a really encouraging step forward.  A couple of weeks ago her nasal tube came out (when she vomited) and Rachel and Matt decided to see how she managed without the overnight feeds.  It was lovely to see her face free of a tube and plasters keeping it in place!

Her latest MRI scan showed no new cancer growth in either her brain or spine, much to our obvious relief.  Of course she will continue to be monitored for a long while to come, with her next check up due in early January.

Her attendance at school every other day continues; she is managing two hours each time at the moment.  Today (Monday 30th) is another red-letter day as she was back in hospital under anaesthetic, to have her broviac line (in her chest for administration of drugs) removed.  She came home delighted to be without it, as once the wound heals she will be able to go swimming and to have deep baths!

Saturday was a wonderful joyous day - Phoebe's 'End of Treatment' party!  Rachel and Matt invited the many, many people who have supported them during this most difficult period of their lives, to come and celebrate the end of Phoebe’s treatment.  Phoebe asked to stay up late, dance and eat marshmallows, and between 200 and 300 people came along to do just that!  (We did eat a few other things too!)  The dance studio where the party was held laid on a surprise for Phoebe – two professional dancers demonstrating various dances for about 10 minutes.  Phoebe was thrilled.  Friends travelled over from Spain, friends and family came from far and wide in the UK, and of course lots of local friends were there.  Matt made a very moving speech thanking people for their support and speaking of how Phoebe’s, Rachel’s and his faith had grown during their severe trial.

We too feel that our faith has become more precious to us during these months as we have had to lean on the Lord more than ever, for physical, mental, emotional and spiritual strength.  It has been humbling to know that so many have been praying for us, as well as sending gifts, making meals and encouraging us in so many ways.  
THANK YOU ALL!


Marcus and Jen
_____________________________________________________________

Yet, we also know that our journey with Phoebe is being repeated again and again in other families around the world, and that other people and situations may be your current focus and concern. If you no longer wish to receive these updates, simply click on the 'unsubscribe now' link at the foot of this email. Thank you.

Phoebe's trip to see 'Strictly'

Life has changed a lot for us since Phoebe returned home from hospital.  Matt and Rachel carry huge responsibility caring for Phoebe, deciding when to put feeds in her tube, when to give her painkillers, how much to expect of her in terms of energy and behaviour.  This week Matt returns to work after months of sharing equally in Phoebe’s care, whereas now much more will fall to Rachel.  Jen still goes to help out when asked, but not every day as before, as Rachel is keen for family life to return to as near normal as possible.

Phoebe has started a phased return to school; she attends until 10.10am on Mondays, Wednesdays and Fridays.  She is still quite frail and tires easily so has an afternoon nap every day.  We are hoping that slowly she will build up enough strength to stay longer at school, with Tuesdays and Thursdays as rest days for some time to come.

A couple of weeks ago Jen had a lovely break at her sister Valerie’s, a few days with nothing to do but rest, read, play the piano and enjoy delicious meals!  It was well timed as the emotion of the previous months was suddenly taking its toll and tiredness and tears were not far away.

Rachel and Phoebe

Phoebe with her 'Strictly' stickers

A little while ago Matt asked on Twitter if anyone knew how to get tickets for Strictly Come Dancing as a treat for Phoebe, who loves watching “the dancing show”.  The message reached the BBC who supplied tickets for Phoebe, Rachel and Jen to attend a recording of the Children in Need special and the dress rehearsal for the live show last Saturday.  We stayed overnight on Friday with dear friends from our old church in Stevenage, put on our posh frocks and went along in the pouring rain to enjoy the show.  There was a lot of waiting around which Phoebe coped with really well, and then front row seats opposite the judges’ desk!  Jen hadn’t been following “Strictly” but the whole experience was great fun and it was wonderful to see Phoebe smiling throughout!  Several of the dancers and “celebrities” came over to chat with Phoebe and other children in wheelchairs.
We are not under the illusion that a treat like this in any way makes up for the months of suffering that Phoebe has undergone, or that our family “deserves” a treat to recompense us for our difficult year.  But it was great for the three of us to have fun together and the photos will remind us of our day in the bright lights!

We are so grateful that you have been following us in this journey with Phoebe, and thank you for all your prayers. Please keep praying.
Many thanks
Marcus ans Jen
_____________________________________________________________

Yet, we also know that our journey with Phoebe is being repeated again and again in other families around the world, and that other people and situations may be your current focus and concern. If you no longer wish to receive these updates, simply click on the 'unsubscribe now' link at the foot of this email. Thank you.

The challenges continue!

It’s been a joy this week to have our son Jon, with Heather and Rosanne, stay with us (as it is half term in Scottish schools).  They have provided our main meals, cheerful company and even a companion for Bramble with their foster dog Mika!  Rosanne is always so kind to her younger cousins and they love playing with her.  They even went to McDonalds for breakfast one morning! 

But life is nonetheless not easy for the whole family as we adjust to this new phase.  We all feel tired and emotional – the tensions and stresses of the preceding months are taking their toll.  The simplest way to put you in the picture is to quote Matt’s latest Facebook update:

It's been over a week since Phoebe was discharged & while it is lovely to be home together, life unexpectedly feels more difficult than it did in hospital. Without the support of medical staff we are always thinking about fluid targets, NG feeds, medication, physio, sickness, rest time etc. Phoebe's body needs huge amounts of energy to heal up and recover after all the damage caused by chemotherapy and radiotherapy, so there is little energy leftover for normal daily activity. It is very difficult to know what our new 'normal' is or should be.

Both kids are having to re-adjust to life home together, lots of tears and difficult moments for each of them as they have to share our attention with each other and all the responsibilities that come with running a home. In hospital we could focus solely on Phoebe but at home that simply isn't possible and it's a steep learning curve for her. We feel we can't give Phoebe or Reuben every bit of attention they crave & that's difficult because they are both extremely needy emotionally right now.

The constant weight of living with cancer seems to taint all we do and it's exhausting. We fight for joy but it is a real fight and doesn't come easily. We look to the promises we have in Jesus and long for them to come soon.

Please pray for:
- physical & emotional rest, as we are all exhausted from broken sleep, colds and the constant weight of living with cancer.
- Phoebe that her stamina, strength & appetite will quickly return.
- Reuben as he battles behavioural issues.

As always, big hugs y'all! Xx

We are so grateful that you have been following us in this journey with Phoebe, and thank you for all your prayers. Please keep praying.
Many thanks
Marcus ans Jen
_____________________________________________________________

Yet, we also know that our journey with Phoebe is being repeated again and again in other families around the world, and that other people and situations make be your current focus and concern. If you no longer wish to receive these updates, simply click on the 'unsubscribe now' link at the foot of this email. Thank you.

Home at last!!!

'Day release' is now 'Home again!!'

About an hour ago Matt wrote the following on the #PrayForPhoebe Facebook group:

"9 months and 1 day ago we went into hospital with Phoebe not knowing the heartache, pain and struggle we had ahead of us. Today, Phoebe was released from the hospital to come home for good! While treatment didn't go as smoothly as it could have, it went almost as fast as it could have.

We aren't finished on this journey as there will still be many hospital visits, MRIs, check ups etc but the intensive period of this process is over. Now, our attention switches from surviving to healing up. Phoebe's body is broken, battered and damaged and will take a long time for her health to be restored and some things simply won't heal.

Your prayers and the Lord's faithfulness have been pivotal to our endurance, strength and joy. Thank you. We love Jesus now more than ever and pray that all of our friends and family would come to love him too.

As we transition please pray for:

• Phoebe as she continues to heal.
• Wisdom as we think about how to begin Phoebe's transition back into school.
• Phoebe to get back to eating and drinking and wisdom to decide when to take out her NG tube.
• Our whole family as we begin to adapt to our life back home together.
• Reuben as he must learn again he isn't King of the castle! This is likely to be the cause of many future fights between him and Phoebe.
• For the cancer to never return."

We (Jen and Marcus) join Rachel and Matt in thanking you for your prayers and many practical kindnesses. You have helped us through this ordeal, but most of all we thank God!

Day after the tumour removed

After radiotherapy completed

Chemo complete!

Getting there

Phoebe's day release

It’s great to be able to report that Phoebe has completed her last round of chemo, her blood count is up and she is out of isolation.  Hallelujah!  So there are now short trips to the museum or park opposite the hospital, and more visitors allowed to pop in to her room and help her pass the time.  Yesterday she was on “day release” and enjoyed being home for a while, and she was able to come to church this morning.  When they arrived, Reuben ran up to Jen with a delighted “look, Phoebe’s here”!

Her gut and stomach lining have been damaged by the chemo drugs and this is why she can’t yet go home full time.  Her pain relief needs to be carefully monitored and we are hoping and praying that she will gradually be able to increase the tiny amounts of food she consumes so that she will at last be free of the nasal tube.

It will take a long time for Phoebe’s body to recover from the onslaught of drugs, energy levels to rise and her old sturdiness to return.  It’s hard to picture her with a full head of hair, good balance and strong muscles but we pray that in time all this will come.  Eyelashes and eyebrows would be good too! 

But through all that has happened to her Phoebe has been a great example to us of patience, endurance and confidence in God. It has been a real privilege for Marcus to spend time with her in isolation talking, reading her children's Bible and praying together. She has been such an encouragement to many.


Although we are confident that the worst is over now, we ask you please to continue to support the family in prayer as they go through the many adjustments that will be needed in the coming weeks.  We get used to one phase only to find we are entering another, and that pattern is bound to continue for quite a while.

Once again thank you for all your prayers!