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.

…the winds blew and beat against that house; yet it did not fall … (Matthew 7v25)

The second cycle of chemo was really horrible for the first week, but Phoebe is improving again now.  In the first few days her lovely face was so swollen that she could barely open her eyes; I thought my heart would break when I visited her last Sunday (isolation started on Monday) and Rachel and I took her to the park in her wheelchair.  The brass band music was too loud for her, her thighs were aching, she was too tired to complete her favourite activity in the museum (making a monster on the computer!) and we went back to her room so that she could have some painkillers.  She and Rachel lay on the bed and Phoebe was soon asleep.

If I as her grandma feel so sad about all this, just try to imagine the heartache for Rachel and Matt.  Although they are clinging on to the Lord, every day is very hard for them and I do ask those of you who pray, to keep on asking for the daily courage and trust they need to live through these days.  As Jesus’s story about the wise and foolish men reminds us, it is those who are hearing and living out his words who find their lives survive the storm.

This is Rachel’s update on Facebook today:

So the start of cycle 2 has been really rough, but at last I feel that Phoebe is herself again...enjoying colouring, stories, crafts, films etc. Yesterday she even managed a few minutes dancing! Tomorrow is another day of chemo drugs so please pray this doesn't knock her back too much, and then it's the slow road to recovery as we wait for her to gradually regain immunity. In this time please pray that she can begin to tolerate more food and that she wouldn't get any infections along the way. Thanks.

Reuben’s nursery has closed now for the summer holidays, so my days with him will start a little earlier from now on.  Grandpa is returning from Madagascar on Wednesday, and will be joining me in all our fun activities!  We are taking Reuben to a family party in Surrey soon, and then going on to spend a few days with buckets and spades at Weymouth, which is where all four Lollars were planning to be for their summer holiday, before we had any inkling what this year held in store.

Chemo round 2 and the bigger picture

Matt's Facebook update gives you an idea of the sorts of things they are
dealing with on a regular basis:

After 5 lovely days home we are back in hospital for Phoebe's second cycle
of chemo. Thank you all for messages, prayers and for respecting our wishes
to keep clear unless invited around.

A week ago today Phoebe had an MRI scan to check for tumours and the tumour
site for any growth and we are thrilled that everything looks perfect up to
now. Scans will be done regularly to monitor whether treatment is effective
or not. Each of these MRIs make us nervous as we wait to hear the results.
Should any growth occur at the former tumour site or any other brain tumours
develop, treatment options are virtually non-existent.

Please pray that Phoebe would get through this cycle of chemo as quickly as
the last, that the drugs' side effects would be minimal and their
effectiveness maximum!!

We've noticed Phoebe has become rather 'spaced out', struggling to
concentrate and less responsive than usual. This could be a side effect of
her anti-sickness drugs or a longer term effect of radiotherapy which can
permanently reduce cognitive functioning. Please pray we'd adapt our
expectations of her accordingly and remain patient.

Please continue to pray for us, Helen and Katie as we care for Phoebe during
this cycle, and also for for mum (Jen) as she cares for Reuben.
Big hugs y'all!

In-patient again

Today (Thursday) Phoebe has returned to Sheffield Children’s Hospital for the second cycle of chemo to begin.  I am back on duty with Reuben and Rachel and Matt will spend most of the day with Phoebe, taking it in turns to return home for tea and sleeping, and taking Reuben to nursery next morning.

It was very special to have Phoebe home for a few days, there were no medical problems apart from having to pop back to the hospital to have a new nasal tube fitted.  There was a continual refrain of “have a drink Phoebe”, and sometimes Reuben needed reminding why Phoebe is asked “what would you like to try eating?” while the rest of us eat what is put in front of us!

Rachel and I have both had preliminary appointments with Cavendish Cancer Care, a Sheffield based charity that supports cancer patients and their families.  They offer counselling, relaxation classes etc, and the client can choose (free of charge) what they feel will help.  As they have specialist help for children, I am hoping to be advised on how best to play and chat with Reuben to help him express his no doubt mixed emotions – confusion, fear, anger?

Having learnt (the hard way) while I was helping my sisters care for our elderly mother that I am not superwoman, I am seeking to be wise and not aiming to achieve much more than caring well for Reuben.  I was feeling rather defeated by our garden where the weeds are taking over, until kind friends in our church Life Group started doing some weeding – and even planted beetroot!  This has inspired me to do the occasional ten minutes myself and I feel less daunted now.

Thank you so much for following the blog and supporting us all with your prayers, I cannot tell you how much this means to us.

More rejoicing!

Today (Friday) is a special day! Phoebe has done so well recovering from her first cycle of chemo that she has been allowed to come home for a few days!  She will need to attend a couple of clinics on Monday and Tuesday but otherwise won’t be an inpatient again until Thursday (9th) when cycle #2 of chemo begins (unless she becomes unwell before then).
Thank you all so much for your prayers. We really do put this amazing recovery down to the Lord's kindness in answering the prayers of his children.

It's important to say Phoebe is still very weak and quite frail but her immunity is back and her platelet count is continuing to rise. This time at home will be very slow paced and relaxed. People are being asked to resist the temptation to drop in unless invited/arranged as we still want to limit the risks of her catching something from people, especially children!

What a joy it was this afternoon to sit under the garden umbrella with Phoebe and Reuben, our feet dangling in the paddling pool, reading a story and making sure we all had a sip of water each time a page was turned!  Her two school teachers called in too and it was lovely to see their obvious affection for Phoebe.


Wonderful though all this is, please do pray for Matt and Rachel who, without medical supervision, are responsible for Phoebe’s medication, nutrition and hydration.  They need continued wisdom too, in helping the children to manage the change in circumstances – it must seem that as soon as we get used to something, it changes and different dynamics ensue.  But we are so grateful to God for this oasis and pray that the four of them will have a very special time together.