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
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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.

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!

A relatively good week

After the difficulties Phoebe suffered with the third round of chemo we wondered what might happen this time round. we are happy to report that this week Phoebe has coped well and remained relatively healthy.  

Last Saturday we were due to care for Phoebe while Rachel, Matt and Reuben went to a wedding; but Phoebe having had a bad night, wanted Matt to stay, and so Jen and Marcus went to the wedding service instead. However, we were pleased to get a text message partway through the service from Matt asking us to go to the hospital and take over from him; Phoebe was now willing to have us care for her.

Marcus spent Wednesday afternoon with Phoebe, and then Thursday late afternoon, evening and night with Phoebe. They got along well, reading, watching films, snuggling up, giving Phoebe a back scratch (which she loves, and distracts her from pain elsewhere). Phoebe retains her mischevious streak. On Friday morning Marcus went to get her breakfast, and as he was leaving she asked to look at the photos on his phone. Later in the day he found that she had added three more! Two of her room - and the 'selfie' below!

A selfie!

Today Rachel posted the following update in the '#PrayForPhoebe' Facebook group:

This week has been fairly uneventful - which is good! Phoebe's been in a fair amount of pain in her throat (due to chemo) and she is on regular doses of morphine which may need to be changed to a constant morphine drip if no improvement today. She is also struggling to keep fluids down today. 
Tomorrow is a significant day as it's the last dose of chemo for this cycle, and therefore the last dose altogether. We all can't wait to be rid of the awful nasty horrendous toxic poison that is chemo! Hopefully just another couple weeks in isolation for recovery and then we'll be outta here! 
Please pray for patience to endure - now that the end is in sight it almost feels harder than ever to be stuck within these 4 walls day in, day out, and we are all a little stir crazy! Thank you!

Jen continues to collect Reuben from nursery Monday to Friday and then has an enjoyably tiring afternoon with him. He is overjoyed to see mum or dad come home in the late afternoon, and they spend some time together before tea and bedtime. 

We continue to be heartened by your support. One friend has texted us every day since Phoebe's operation in February to remind us she is praying for us!

Fourth and final round of chemo

Today (Thursday) marks the start of Phoebe’s fourth and final round of chemo.  

Here is Rachel’s update:

"Last week's MRI results are in and we're relieved and delighted to know that it's all clear with no signs of any growth! Her hearing test was the same as the last one so no further damage has been done. But her kidney function has declined further to the point where it is no longer safe to use Cisplatin for this cycle of chemo - instead she'll be given Carboplatin which is less damaging to kidneys and hearing, but more damaging to bone marrow. This means she'll likely take longer to recover from this cycle, ie stay longer in isolation while blood counts are down and she has no immunity. It also means she'll need more platelet transfusions and blood transfusions, which have previously sometimes caused itchy rashes. Please pray for the patience to endure the next several weeks well! Thanks."

We are so grateful for all the wonderful support we’ve been receiving over the past months, and ask you to keep going with us until the treatment is complete.  We are all tired – physically, emotionally, mentally and spiritually!  Phoebe continues to amaze us with her resilience and usually cheerful spirit but obviously this year has taken a terrible toll on her in every way.  Even though in many ways it feels that the end is in sight, it will be a long time before she has a healthy appetite and the energy she used to enjoy.

Matt is recovering well from hip surgery – another two weeks on crutches though!  Reuben is back at nursery on weekday mornings, and rugby on Saturdays.  He is happy enough with us, but often asks when Mummy or Daddy are coming home so it’s clear that he is really looking forward to life getting back to normal.

Last Sunday we were encouraged by the sermon at church from 2 Corinthians 1:3-11 on the subject of God's comfort. You can listen to it at www.thecrowdedhouse.org/project/gods-power-in-our-weakness/ 

We thank you again for all your prayers for Phoebe, Rachel, Matt & Reuben and ourselves.

Chemo cycle 3 completed

During the last week Marcus has been spending time with Phoebe in isolation. Matt had to be away in London having a hip operation and was not able to be with Phoebe, so Marcus was with Phoebe instead, so preventing a lot of extra pressure on Rachel. This was a special time and they played, read, watched videos, and made the following messages to put up at Phoebe's window when friends came to wave to her.

Phoebe also did some painting and had times of rest.

Painting - out of hand!

Sunday morning nap

We are more than glad to report the end of cycle 3 of chemo now that Phoebe’s blood count is up again and she is able to come home for a short break.  Phoebe is really looking forward to having the temporary lines in her neck removed today (Tuesday) and enjoying her first deep, splashy bath in months!  After being so terribly ill early in this cycle it is wonderful to see her doing relatively well, eating small snacks and cheerfully playing games, doing craft etc. She will have to return to hospital on Thursday to have a new Broviac line fitted, which is necessary for the fourth round of chemo.

Today she would normally be starting the new school year (in year one) and she is hoping to be able to visit the school before the final chemo cycle starts on Thursday 10^th September.

Matt had surgery on his hip last Friday and is now back home on crutches and painkillers!  

Jen has continued to spend much of her time with Reuben; he is looking forward to nursery restarting today and will be there for 3 hours each weekday morning.

The Lollars are looking forward to being all together for most of the coming week and then we all gear up for the last round of chemo in the hopes that it will go more smoothly than the third.

As Phoebe says, 'Thank you for praying'.