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.