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'.

A week not to be repeated

A week ago we wrote about the beginning of Phoebe's third round of chemo, due to start on Thursday 13th. That morning we (Reuben, Rosanne and Marcus) called into see Phoebe and this is what we found. Phoebe eating a second breakfast which, after all her struggles with food, was surprising. We had a happy time together. At this point Phoebe was only receiving fluids and all was well.

The turn around in her condition in the next 72 hours was very worrying indeed, and it happened very quickly on Friday. By that night Phoebe was in Intensive Care (ICU) with an excessively high temperature. On Saturday morning she seemed to have improved but as the day progressed she worsened again, ending up sedated and on a ventilator until Sunday evening. This allowed time for her Broviac line to be removed (a possible cause of the infection) and other procedures to be done.

So Saturday night and Sunday was a very worrying time. Thankfully on Sunday evening Phoebe began to improve and on Monday morning she was moved back to her room on the Oncology ward. Marcus was able to see her briefly last night - she still looks tired and weary, but was eating an apple. Phoebe is now in isolation which will last for two or three weeks. What happens with the rest of this chemo cycle is not yet clear to us.

Yesterday Rachel wrote:
Phoebe has moved from ICU back on to her normal ward today as all her vitals are fine. She is dealing with very dry puffy rashy skin and diarrhoea, and is extremely tired and emotional following the weekend's ordeal. She's had her stem cells back and is now in isolation. At some point towards the end of this cycle she'll need surgery to put in a new Broviac line as the central line and cannulas are only a temporary fix. Because of the sepsis, she had to miss Saturday's dose of chemo, so please pray this isn't detrimental in the overall treatment of the cancer.

Once again we covet your prayers for Phoebe, Rachel, Matt & Reuben.


Again we have been surprised at how tired we feel due to the emotional energy expended at such times as this. We both feel very tired when we stop, so are amazed at how Rachel and Matt continue to cope so well through all the stress and emotion of this dreadful situation.  We are very thankful that Phoebe survived her terrible weekend and is stable again.


So it was good to be reminded this morning of these words from Isaiah 40:31: "but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." (NIV).
Please pray that we would continue to hope in the Lord.

Many thanks to all who pray, who write, who call and support us in various ways. And many thanks to the staff at Sheffield Children's Hospital. May God bless you all.

Worrying times

Phoebe commenced the third cycle of her chemotherapy treatment on Thursday (13th), receiving fluids in the morning and chemo drugs in the afternoon. We have been in to see Phoebe a few times with her cousin Rosanne and Reuben. On Thursday morning I took this photo of Phoebe tucking into a second breakfast. It has been good that, towards the end of the two week gap between chemo cycles, her interest in eating returned, such that she had put on a little weight.

However, within 36 hours Phoebe was very ill. Her temperature started rising on Friday afternoon, and when we left she was shivering feeling cold, but actually extremely hot. During the night her temperature continued to rise peaking at 40.4 deg C, and her pulse reached 180. After a number of failed attempts they finally managed to insert a new cannula, through which they could supply further medication. Thankfully during the night Rachel was able to get some sleep, and early this morning Rachel took over from Matt so he too could have some rest.

Marcus called into the hospital this morning to take Rachel some coffee and croissant and was able to see and talk with Phoebe. She is still very hot to the touch, but her temperature has dropped to 39.0. She still feels cold and wants a blanket, and is tearful that she has to remain uncovered. Thankfully she is talking clearly and when I arrived she was having a conversation with the nurse about Disney characters. I was able to give her kisses from Grandma, Grandma Sheri and Grandpa Bill.

This morning we were intending taking Rosanne to say cheerio to Phoebe; but as Phoebe is in ICU we cannot do this. Rosanne's visit has been lovely. As GrAVy (Great Auntie Valerie, Jen's sister) has said, Rosanne has been spreading her rays of sunshine among us all. She has played happily with Reuben and been a pleasure for Phoebe. It will be odd not having her around with us. 

Do please pray that Phoebe will continue to recover and will soon be well enough to leave ICU and return to her room on the Oncology ward. There is also the need for great wisdom in future decisions for Phoebe's treatment, but the medical staff and for Rachel and Matt. May God give them all much skill, wisdom and courage to make good decisions.
Thank you.

Round three is about to begin!

Phoebe has had a few extra days at home while waiting for biopsy results and decisions about the next round of chemo, which is now scheduled to start on Thursday (13^th).  

So she’s been able to spend more time with the family, and instead of waving out of the hospital window when Great Auntie Barbara was passing through Sheffield, they could chat and cuddle at home – so much better!

Phoebe was keen to stay overnight with us on Friday night but after a couple of hours asleep she woke up with very itchy legs, so we helped her stand in cold water for ten minutes. But then she did not settle, was upset and wanted to go home again.  So Rachel and Matt's undisturbed night did not happen as hoped.

Enjoying an ice cream!

On Saturday we looked after both children for a couple of hours to allow Rachel and Matt a much needed nap, and it was lovely to see Phoebe and Reuben together in Sheffield city centre, enjoying some fairground rides, ice creams and paddling in the fountains.

The best way to set out how you can pray for the family over the next few weeks is simply to repeat here Rachel’s post on Facebook on Monday 10^th:

It's hard to summarise everything we discussed with Phoebe's oncologist this morning! But here are the headlines...
- cycle 3 of high-dose chemo is delayed again until Thursday
- her rash is almost gone but not yet completely cleared from her feet
- skin biopsy didn't reveal anything conclusive about the cause of the rash
- kidney test revealed loss of kidney function and hearing test revealed loss of high-range hearing, but neither to a significantly damaging level to discontinue the use of cisplatin in the next cycle
- she is slightly anaemic
- her platelets are stable
In some ways we're disappointed not to be getting on with chemo today but in others we're thankful for a slightly longer reprieve at home, especially since Phoebe's interest in food has returned and she's managing to snack her way through the day. We need her to be in the strongest possible state physically before the next onslaught of chemo drugs. We're also hoping we can all catch up on some decent sleep the next few nights as last night was the first time in ages that she hasn't needed dunking in a cold bath to relieve itchiness!

Please pray for:
- Phoebe when the next cycle of chemo begins on Thursday. We expect that side effects will be worse and recovery time longer given that she starts from a weaker position each cycle.
- Reuben as he has to get used to being away from Phoebe again, and also away from us for longer periods of time.
- Matt having hip surgery in London on August 28th (and Rachel left holding the fort!)
- ongoing energy and strength for all of us, and for Rachel's parents who primarily care for Reuben.

About noon today we had a call from Matt saying that they were in a park near us and Phoebe wanted to have lunch with us. So a little later Rachel, Matt, Phoebe and Reuben all arrived for lunch around our dining table. Lovely! These family times are very precious as soon we will not be with Phoebe during the three weeks or so of isolation.

Tomorrow Jen and I will driving up to near Penrith to collect Rosanne, Phoebe and Reuben's cousin, who will be coming to stay for three nights. They are looking forward to spending time together. 

Thank you for your prayers and many kindnesses!

Home for Daddy’s special birthday!

Phoebe has had another few days at home at the end of the second chemo cycle.  In fact most days she has had one or another procedure in the hospital, but she is enjoying being based at home for a change, particularly on Sunday when she was able to be in church and then at Matt’s 30^th birthday celebration in the afternoon.  It was such a happy time and great to see the family together with good friends.

Phoebe has had a horrible itchy rash all over her body which is very uncomfortable and disturbs her sleep.  The doctors haven’t been able to work out its cause and today a little bit of skin was taken from her thigh for a biopsy.  She is having to get used to all sorts of prodding and poking, and carrying round the bag containing the liquids going through her nasal tube.

Last week Reuben enjoyed his holiday with Grandma and Grandpa, coping well with the long car journeys and being away from his parents, sister and dog!  He played well with second cousins (and their second cousins) at the family party in Surrey, and then with our friends’ granddaughters in Dorset.  He did have a mishap with a less-than-friendly dog which resulted in a swollen lip and grazed cheek so we made a visit to A&E as a precaution.  He was happy to be given a knitted teddy, some delicious antibiotics and advice to have ice lollies to get the swelling down!

Jen has appreciated some good advice from Cavendish Care (see previous post) and this morning a lovely relaxing massage there.  Meanwhile Matt has been in London seeing the surgeon who will operate on his hip at the end of the month.

We expect the third chemo cycle to start on Monday 10^th; please continue to hold Phoebe in your prayers as she takes on the next onslaught of drugs.