Tuesday 1 August - please pray for a diagnosis

Here are some more updates from Rachel and Matt:

Speaking about Monday 31st, Matt wrote:

Today has been extremely difficult for us. As I write this I am exhausted & feel emotionally beat up and spent. Our heart is broken for Phoebe.

Phoebe has continued to run a fever throughout the day but it finally broke this afternoon. She has had tests for pretty much everything imaginable, neurological, respiratory, infections, bacteria & so on. Every test that has come back, has come back negative but we are still waiting for some results. Right now she seems to be improving some physically but getting worse neurologically. The neurosurgeon has ruled out the possibility of a shunt malfunction/infection and he has ruled out further tumors. This leaves only one likely possibility of a problem, infection. As a result, she has been put on a very broad spectrum of antibiotics to cover a wide array of possibilities including Meningitis, but Meningitis has not been ruled out yet.

A neurologist has now been called as Phoebe appears to now be having seizures although this isn't confirmed yet. She is also going in and out of consciousness. She has said extremely bizarre things like "don't you dare hit me with that" or "please daddy can you carry my plate to the kitchen". It hurts deeper than imaginable to see her this way. Tonight she is hooked up to an EEG machine and we will know more about this tomorrow.

We are completely at a loss. No one knows what's happening in her little body or mind and therefore her treatment is likely to be too general to cure the problem. Please take time to pray for Phoebe, as often as you think of her or us. We are powerless and the doctors are powerless but there is one who holds the power to life.

A friend reminded me of this today "The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."

The Lord is at hand. Please pray that we will continue to trust Him now. We need our Father to intervene to heal our girl.

Big hugs!

Their situation is summarised by Matt writing this: "I couldn't beg you more but please pray for Phoebe."

Messages received today (1st August):

[31/07 21:16] Matt: Just spoke with Neurosurgeon and a doctor for Infectious Diseases. At this stage they are wanting to focus everything on the likelihood of infection, virus or bacteria. Could even be some extremely rare water born bacteria from Lakes. She got through the lumbar puncture just fine but is far from being well. They don't think it is shunt/neuro related at this stage.

[01/08 00:06] Rachel: Lumber puncture was hard because of all the associations of Feb 2015, but we're glad that it looks v unlikely to be shunt related , but frustrated that we still don't know what we're dealing with . Feeling calmer again now and being well supported by church here.

[01/08 13:12] Rachel: Only test that's come back positive is for CDif which would explain the diarhea, stomach pain and fever... but I can't imagine how something so common could cause such neurological issues... neurologist has looked briefly at EEG results so far and says it does suggest seizure activity but the test isn't finished and this isn't confirmed yet.

Matt says she has seemed more 'with it' early this morning which is encouraging, I have just arrived back after getting some sleep at home, cleaning the vommity car seat etc and re stocking supplies.

After lunch we (Jon, Rosanne, Jen and Marcus) had a video call with Phoebe and Matt. Phoebe has bandages around her head holding electrodes in place while they track the activity in her brain. She knew who we were but was confused as to where we were. Then, as her eyes fixed, it seemed that she had a mini seizure.
It was so good to see and speak, but it underlines the gravity of the situation.

We seek to comfort each others with words like this:

Psalm 46:1-3 NIV

God is our refuge and strength, an ever-present help in trouble. [2] Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, [3] though its waters roar and foam and the mountains quake with their surging.

Thank you!
May the Lord bless you too!

Marcus and Jen

Monday 31 July - please keep praying for Phoebe

During today we have received the following updates (UK time) from Rachel and Matt.

[13:59]

Phoebe has had a fever all night which doc this morning has just told us is a good thing as it indicates she's more likely to be unwell from an infection rather than shunt malfunction . They'll run more tests today and we're waiting to see neuro surgeon.

Please don't worry, we feel calm and are in good hands xx

[14:01]

Also, Reuben slept well and woke cheerful so that's an answer to prayer too.

[20:13]

Please pray! Phoebe is deteriorating somewhat and neurological signs are getting worse. They are about to lumbar puncture to test for viruses.

[20:50]

Phoebe is currently in procedure for a lumbar puncture; they are concerned that she could have a virus in her cerebral spinal fluid.

Please pray with us and for us.

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During the day Rachel has also written this more reflective piece, highlighting our confidence in God:

Two nights ago I was drinking wine on the veranda, watching a beautiful sunset over calm lake waters under the stars after a day of boat riding, swimming, jet skiing and feasting. Last night I was napping my way through a night of hospital machines beeping interspersed with distressed cries from my poorly and exhausted daughter, horribly reminiscent of so many such nights 2 years ago. Within a few hours our circumstances are so different, but our God is the same, and there is so much comfort in knowing that the one who made and sustains the lakes, stars and sunsets is the one who made and sustains my sweet girl.

Thank you

Marcus and Jen

Please pray for Phoebe who is unwell again

"The prayer of a righteous person is powerful and effective" (James 5:16 NIV)

Last night (Sunday) about 10.30pm (4.30pm in Alabama) we received the following message from Rachel:

Please pray for Phoebe. We are on our way to hospital. She is not right at all, been vomiting and neurologically unresponsive.

Phoebe a month ago

Rachel & Matt, Phoebe and Reuben had enjoyed a happy weekend away from Mobile with friends.
While on the their way back home, they had to call an ambulance after Phoebe was very unresponsive and crying. She was taken to hospital in Montgomery, Alabama (about 170 miles from Mobile). Obviously they are very concerned for her.

Since then Rachel has asked:
Please pray especially for Reuben. He is finding it very distressing seeing Phoebe in this state.

At 5am this morning (11pm for them) we received this update from Rachel:

We are all back in Mobile. Reuben staying the night with the friends we've been with this weekend. He'll go to Matt's sister's tomorrow. I'm staying at the hospital with Phoebe; Matt has nipped home to bring me a few supplies and all Phoebe's notes. 

So far CT scan and X ray suggest shunt is ok and she wasn't dehydrated as we thought . But she's still not right at all. Could still be shunt malfunction. Aiming to keep her comfortable overnight and waiting to see a neuro surgeon early tomorrow . But she's starting with a fever now (11pm) so pray that doesn't develop. Staff here are v nice. Thanks for prayers.

She's been quite incoherent, confused, and distressed. She's sleeping calmly now but is running a fever. Yet again we covet your prayers. We haven't seen her this poorly since she was in ICU with sepsis in Aug 2015.

This brings back painful memories of two and a half years ago. Please pray for them!

Thank you

Marcus and Jen

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For email subscribers:

We 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.

The USA adventure begins!

It is great to report more good news for Phoebe – another clear scan, and another 2 cms gained in height!  What a great way to sign off at Sheffield Children’s Hospital after two and half years!

Rachel’s Green Card was at last granted last month and in these last few weeks she has continued to work very hard sorting out everything that needs to be done when a family moves from one continent to another!  Meanwhile Matt was busy preparing their new home in Mobile, Alabama where he has been working since February.  Although it goes without saying that we will miss them hugely, we are delighted to report that today all 4 Lollars are together again and on their way to the USA.

Leaving their home in Sheffield

Farewell photo with English grandparents

It has been an emotional time for them with so many fond farewells to be made with neighbours, school friends, church, rugby coaches (Reuben) and art club leaders (Phoebe).  Not to mention the difficult decision made not to take Bramble the dog with them; she is going to live with their friend Phil near Matlock and will probably still come to us for her holidays!  But this morning the children were excited to be on their way at last, and thanks to the prayers of our good friends we were able to take them to Manchester Airport and wave them off without tears!

Matt, Reuben, Rachel and Phoebe at Manchester Airport

So now it’s our turn to be the long-distance grandparents and learn to relate to the family via Skype and Facetime.  We hope to plan a visit to them in the autumn, by which time we hope they will be well settled in neighbourhood, church and school.

If you are interested in continuing to follow Phoebe's story, why not visit the new blog set up by Rachel and Matt. - prayforphoebe.wordpress.com/. At this stage we are not expecting their updates to be regular or frequent.

Thanks for your interest and prayers!

Marcus and Jen

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For email subscribers:

We 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.

New tooth and 2 centimetres taller!

It is now about seven weeks since Phoebe started having nightly growth hormone injections, and we did not know what the exact outcome would be or when. But already we have seen two consequences.


The first is that Phoebe's second teeth have started to grow, and push the first teeth out. So last Saturday we received a message and photo from Rachel showing this photo of the first tooth gone!
Phoebe was so pleased to be like her school friends who already have some of their second teeth.

The second outcome was on Tuesday. Rachel wrote the following recently in her blog:

Phoebe was seen in the late effects clinic yesterday to check on her general health and specifically how she's been getting on with the growth hormone.  Thankfully she's experienced no side effects from taking the hormone, and she's a complete trouper about her daily 'poke' with a needle. We were delighted to discover that she has grown 2cm in height! So it works!  She also seems to have more energy in general which is great.

The neuro-surgeon, who we haven't seen for ages, seemed amazed at how well she is. He commented on how bright, alert, co-ordinated, engaged and conversational she is, and said "considering that we sliced open the back of her head and messed about with her brain, she's doing incredibly well".  It was so encouraging to hear that, because it's easy in the mundane routines of life to focus more on what she lacks and struggles with due to the tumour and treatment, rather than on how far she's come since then, and how much worse things could easily have ended up.

She continues to struggle with school work, particularly maths, but her teacher assures us that she is making progress.  She seems to manage better in the classroom environment than at home, perhaps because she's keen to do what her peers are doing, or perhaps because by the time she gets home her brain's too tired to function well.  Either way, there is cause for encouragement.  However, the late effects consultant said that at some point in the years to come she will likely meet saturation point in terms of her ability to keep learning, and whilst other children's learning will accelerate, hers won't, and so the divergence between her and the 'norm' will widen. We've no idea yet what this might mean in terms of secondary education, but for now we're thankful that she is as healthy and cheerful as she is.

Please thank God with us for these encouragements, and pray with us for the following things:

• Phoebe learning to ride a bike - she's keen to learn but her poor balance makes it very tricky!
• for a good transition of medical care for Phoebe as we move to the States, particularly for getting to know new systems and staff once there
• for Phoebe's lack of hair to not be a barrier to her making friends when we move (she is still self-conscious about it around people she doesn't know well)
• for her next scan (in June) to be clear
• for us as parents to continue to adjust to our new norm and have realistic / appropriate expectations of Phoebe; for the balance of grieving what's been lost (and the lost potential) whilst remaining joyful and hopeful for the present and future.

On 5th June Rachel has to attend an interview at the American Embassy in London, for what we hope will be the last step in the process for her to be able to enter the USA to become a resident. All the items to be shipped to the USA should be packed and taken on Monday, so the departure of Rachel, Phoebe and Reuben to Mobile, Alabama is getting closer. So we are making the most of their remaining time here in the UK.

Thanks for your interest and prayers!

Marcus and Jen

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For email subscribers:

We 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.

Phoebe update

Some of you have been asking how we are since the Lollars moved to the States, and as Rachel and the children are still here it is clearly time for an update!

The wheels of Rachel’s Green Card application seem to be turning, but more slowly than she would wish.  She is due to have a medical in London soon but still has no idea of a date when she can take Phoebe and Reuben to be reunited with Matt in Mobile.  To state the obvious, it is very hard to be separated and we hope and pray that the wait will end soon.  Meanwhile we continue to try to support Rachel in the care of the children and preparing the house to be let.  Matt came back for a few days just before Easter and was able to attend a friend’s wedding where Phoebe was a flower girl.

Poignantly, Phoebe wore the same dress as she had worn as a flower girl two and half years ago.  This gives an indication of the damage to her body from the aggressive cancer treatment she underwent; her pituitary gland no longer functions and so her growth has halted.  About a month ago she started an unwelcome but necessary addition to her day – growth hormone injections.  Rachel was shown at the Children’s Hospital how to give the daily dose by injecting into Phoebe’s tummy or thigh and this is now part of the usual bedtime routine alongside brushing teeth etc.

Phoebe is generally such a cheerful and positive little girl that it is easy to forget the huge challenges she faces on a daily basis.  Concentration and memory problems mean that learning, especially concepts she had not started before she was ill, is very hard for her.  Lack of balance and stamina mean that she has not yet mastered riding her bike unaided.

It was lovely to have Jono, Heather and Rosanne stay with us in the run-up to Easter, and as ever Rosanne (nearly 11) was a patient and cheerful playmate for her younger cousins.

The guitar concert mentioned in our previous update went really well; donations to Brain Tumour Research from those who came and those who couldn’t come amounted to £1180, a total that surpassed our hopes.  March 31^st was “Wear a Hat Day” to raise awareness of the charity, and although we didn’t do any further fundraising, Jen spent the whole day wearing the hat she had for Jono & Heather’s wedding, hoping to provoke some questions! 

We really do appreciate very much your ongoing interest in Phoebe and the family; although we update the blog less frequently than during her treatment, your encouragement and prayers are needed as much as ever.  

THANK YOU!!

Marcus and Jen

_____________________________________________________________

For email subscribers:

We 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.

A new year, a new adventure!

We are delighted to report another clear scan for Phoebe last November – she has now been cancer-free for over a year!  Scans will be done every four months now, instead of every three.  Another milestone successfully passed!

You may be interested to know that Phoebe, Rachel and Matt featured in a short BBC Lifeline programme broadcast on 11th December. The BBC webpage still has some information about the BrainsTrust and Phoebe (but the programme is no longer available).

The Lollars are ready to draw a line under the last two very difficult years and have decided to do so in a big way!  Matt starts a new job on 6^th February – in Mobile, Alabama!  So he will be leaving Sheffield in a couple of weeks’ time; the rest of the family will follow later.  Rachel has applied for her Green Card (the children already have US citizenship) and has to do lots of paperwork and sorting out the house ready for letting. Once all the paperwork is in place they too will depart.

Over Christmas the family spent a happy two weeks in Pensacola, Florida with Matt’s extended family.  Mobile is about an hour away from there, so they were able to visit the town, meet people in the church they had made contact with and get a feel for what life might be like there.

So it will soon be our turn to be the long-distance grandparents!  It will be a big change for us of course, but we are really pleased that Matt and Rachel have the confidence to move forward like this and we will encourage them however we can.

If you are among the many who are still praying for Phoebe and her family, may we ask you to continue supporting them during this period of separation and then the transition into a new life in Mobile.

You may remember that they have been raising funds for Brain Tumour Research and we are joining them in this by organising a classical guitar concert on March 11^th.  We include the details below – please feel free to pass them on to anyone you think might be interested. 
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An Early Spring Concert for Two Classical Guitars

in aid of Brain Tumour Research

On: Saturday March 11th at 7.30pm.

At: 215 Sharrow Vale Road, Sheffield, S11 8ZB. (This is the old Wesleyan chapel which is now the home of The Crowded House).   

The Priestley Taylor Classical Guitar Duo will perform a varied programme of pieces from the sixteenth century to the present day and from around the world.    Works by Dowland, Scarlatti, Sor and others.

All proceeds will go to Brain Tumour Research.  
Please come prepared to make a donation on the door, or give beforehand at:  
www.justgiving.com/fundraising/guitarduo
You could also use this page to donate, even if you cannot join us!
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Thanks!

Marcus and Jen
_____________________________________________________________

For email subscribers:

We 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.