Monday 21st August - Back to school

Last Wednesday Phoebe started her new school in Mobile, Alabama! Her return to school is gradual, doing two hours for each of the first three days, then home for a nap. 

It is wonderful that she has been able to return to a more normal routine.

Once the medical staff were clear about the problem and able to treat her, Phoebe is more like her old self, and when we spoke with her on Saturday she was able to chatter away.

We are so grateful to all who have asked about Phoebe's progress and more of you who have prayed for her recovery and healing.

"Praise be to the LORD for he has heard my cry for mercy. The LORD is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him." (Psalm 28 6,7 NIV).

We pray that Phoebe will continue to gain strength and attend school for longer periods each day. This will probably take several week or months. As life settles back to normal we hope there will no longer be a need for frequent updates to this blog.

Thank you and blessings

Marcus and Jen
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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.

Monday 14th August - back home!!

Last Thursday we wrote about Phoebe being out of ICU, and were rejoicing in that news.

Phoebe playing just before leaving the UK!

Yesterday (Sunday 13th) Phoebe was finally discharged from hospital and arrived back home!! 
She, Matt, Rachel and Reuben were so pleased. After all the scares, air lift, pain and confusion of the past two weeks a sense of normality has returned!

For those of you with access to Facebook, there is another lovely video of Phoebe and Matt in the hospital saying "We are leaving the hospital now!". See:
https://www.facebook.com/groups/PrayForPhoebe/
(If you are not already part of this group you can request to join it.)

We are so grateful to our Father God for his help and support through this tough ordeal, and many thanks too for all who have prayed and sent us messages.


We echo the words of the hymn:

Praise God from Whom all blessings flow

Praise Him, all creatures here below

Praise Him above, ye heavenly hosts

Praise Father, Son and Holy Ghost.

(which you can hear this on YouTube: https://www.youtube.com/watch?v=gF0MgnOjeiw)

Thank you and blessings

Marcus and Jen
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For email subscribers:

You have subscribed to receive email updates from the www.prayforphoebe.org blog.

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.

Thursday 10th August - Out of ICU !!

Since we last wrote on Tuesday there has been some very encouraging news!

Out of  ICU

As we were nodding off to sleep on Tuesday night we received a video call from Phoebe, Matt, Rachel & Reuben telling us that Phoebe was no longer in intensive care (ICU)! 
It was so lovely to be able to talk with and see them all. Phoebe was talking much more clearly and her voice was much stronger. Reuben was able to tell us about his first day at school, and it was great to see Rachel and Matt with smiles!

Phoebe needs to complete her course of Intravenous Immunoglobulin (IVIG) which they currently expect will be done on Saturday. So there is the hope that she will go home on Sunday!!

For those of you with access to Facebook, there is a lovely video of Phoebe and Matt saying thank you for all the prayers for her!. See:
https://www.facebook.com/groups/PrayForPhoebe/
(If you are not already part of this group you can request to join it.)

Many thanks for your concern and prayers!

Marcus and Jen
____________________________________________

For email subscribers:

You have subscribed to receive email updates from the www.prayforphoebe.org blog.

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.

Tuesday 8th August - Update on Phoebe

Here are some more updates about our granddaughter, Phoebe, daughter of Rachel and Matt Lollar and big sister to Reuben.
(For those with access to Facebook, some of these updates are also available by going to the #PrayForPhoebe group.)
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Matt in #PrayForPhoebe
[23.41 in UK and 17.74 in Mobile, 7th Aug]

Today (Monday) has been very uneventful which is a welcome break as the last week has had more drama than we would like.

Phoebe ended yesterday (Sunday) having had two seizures, one 27min and the other 25min. It's been decided to stop the oral Valproic Acid and go back to IV as the antacid used to help side effects of steroids is simple blocking to much of the absorption. The neurologist is keen to get her off of steroids and so today she has begun IVIG (Intravenous Immunoglobulin). IVIG can help with swelling and it will also give her immune system a bit of a break as it's essentially someone else's immunity helping her immune system out. If she does have an auto-immune disease this should help. The neurologist says he has had very good results with it but it can cause severe headaches. She needs 5 days of IVIG which means we are in for at least that much longer. 

Please pray that this treatment will work quickly as there isn't a great deal more they can do after this! Controlling seizures is no priority #1 as Phoebe is improving a lot physically but mentally/neurologically she isn't.

Reuben starts school tomorrow, we all feel sad that he and Phoebe aren't starting together, please pray for him as he settles in to a new culture and school system and that he makes friends quickly. Please pray Phoebe will be able to join him soon.

Please pray for Rachel & I as we are tired and it's difficult not having a set end in sight.

Big hugs!

  "In all our sorrows, Jesus is better, make my heart believe!" 

(Listen to this song on Youtube - Jesus Is Better - Austin Stone)

Rachel Lollar in Facebook
[14.50 in UK, 08.50 in Mobile]
First day of school. Love this boy to pieces and am so proud of him. But my heart hurts so much that his sister isn't beside him. #proudofmyboy#prayforphoebe #notthefirstdayweimagined

A year ago when he started school in Sheffield he was accompanied by a close friend, Isaac, and others from his nursery. We pray that this time he will quickly make good friendships.




Many thanks for your concern and prayers!

Marcus and Jen
____________________________________________

For email subscribers:

You have subscribed to receive email updates of the www.prayforphoebe.org blog.

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.

Sunday 6th August - Update on Phoebe

Here are some more updates about Phoebe, which are available by going to www.prayforphoebe.org. 

As we went to bed on Thursday evening we received the news that Phoebe had suffered a long seizure (lasting 22 minutes). Afterwards she seemed like a different child from the morning.

Rachel in Facebook
[5th Aug 14:00 Mobile]

ICU is a little more relaxed about its rules on the weekend... so they let us sneak Reuben in for a few minutes to visit his sister. These two have missed each other so much this week. Phoebe calls for Reuben all the time when she's asleep and constantly forgets that he's not allowed in here. #siblings#bestfriends


So difficult to see Phoebe so tired and Reuben so sad!




Matt in Facebook
[5th Aug 16:00 Mobile]

Cuddles with mummy! Lovely to see smiles.

After a good night's sleep

Matt in #PrayForPhoebe
[6th Aug 07.29 Mobile]

After a crazy long nights sleep Phoebe has woke up feeling a bit better! If she can get through today without a seizure she should move out of ICU tomorrow to a standard room. Please pray for this! #prayforphoebe

After this Matt sent us a message saying the Phoebe wanted to Facetime with us. Matt told us that Phoebe had slept well, and the previous evening had been able to go for a short walk. We were interrupted by the arrival of her breakfast; she was keen to eat her American pancakes!


Many thanks for your concern and prayers!

Marcus and Jen

(The time in the UK is 6 hours ahead of the time in Mobile, Alabama)

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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.

Friday 4th August - Update on Phoebe

Our update on Wednesday 2nd August - Diagnosis was incorrect. Rachel has written the following correction:
We do not yet have a diagnosis that explains the neurological symptoms. 
The C dif is a tummy bug that was already diagnosed but not related to the neuro issues including seizures.

Here are some more updates from Rachel and Matt. If you use Facebook you can get these updates direct by going to the #PrayForPhoebe group.

Rachel in #Pray for Phoebe
[Thu 3rd Aug 9.24 Mobile]
Medically there is no significant change this morning but please continue to pray for Phoebe, she has become very fearful of anyone approaching her, even just the nurses regular checks or moving from the bed to the commode is a huge ordeal filled with near constant screaming and wailing, and her resistance only makes the tasks harder to complete. All parents will know the heartbreak of seeing their child in fear and pain but this is becoming more and more magnified and therefore harder and harder to bear. She is currently being prepped for another EEG as the doctors want to compare her brain activity now that she's on anti-seizure medication with the previous EEG results. So far that has been the worst procedure , and doing it to her again feels like torture. Utterly heart broken.

Matt in #Pray for Phoebe
[Thu 3rd Aug 22.34 Mobile]

The power of prayer!

Just after I posted our last update about Phoebe's seizures/fever asking people to pray, her neurologist, Dr Martens walked in and said he was walking to his car and suddenly felt the urge to come see us and check in before leaving. The timing was perfect because the seizures were very unexpected and it's been over 24hrs since she has had one. He began looking through her notes and spotted the error from the pharmacy relating to her anti-seizure meds and immediately knew that was the reason for the sudden seizures. When I told him people were praying he immediately got goose bumps as he explained how strong his impulse to come see us was. He has put it down to a freak miracle of sorts, I'm definitely putting this down to the Lord's sovereign control and answer to prayer. Rachel and I are so thankful for everyone's prayers. The Lord listens, delights and acts! Big hugs!

Rachel in #PrayForPhoebe 

[Friday 4th 11:15 Mobile]

This morning everything looks a lot brighter! Once last night's long seizure was appropriately medicated she had a good night's sleep and has woken seeming much more her usual self than we've seen all week. We've seen a few smiles, heard her laugh, and watched in amazement as she tucked away 3 rashers of bacon and some scrambled eggs washed down with chocolate milk! She's played with bubbles with a physio and has sat on the couch and coloured for a few minutes. She's certainly very weak and has poor hand eye coordination but it's so encouraging to see this significant progress.
We were previously told that the C-diff bug and the seizures were entirely unrelated, but all tests for other infectious diseases have come back negative. So the working diagnosis now is that the C Dif brought on such high fevers that this lowered her threshold for seizures and because of the neurological weakness from the tumour and treatment, she is also more predisposed to seizure activity.
The doctors are also consulting with Phoebe's oncologist in Sheffield who had suggested that this episode could be SMART - Stroke like Migraines After Radiotherapy - as she has seen this in other children with medulloblastoma post-treatment.
As ever we're so thankful for you standing with us in this difficult time!

We are so grateful to the Lord for this progress after the horrors of yesterday this is a wondeful turnabout. We pray that it will continue for Phoebe's blessing and God's honour!

Matt has also written the following about Phoebe's brother, Reuben:

I'm proud of this guy. In times like these it's easy to forget how much this all effects him; knowing his sister (and best friend) is sick and being away from his Mum & Dad is hard on him. The lovely thing to see is how he makes the choice to be joyful & thankful even when being sent to stay with others. My prayer is he grows up knowing how deeply loved he is and that he never feels like he got the dregs of our time/attention.

We have been encouraged by the hymn 'He will hold me fast'!

You can listen the hymn on Youtube at: https://www.youtube.com/watch?v=z4tTPDyEtPE 

or buy it at: https://sovereigngracemusic.bandcamp.com/track/he-will-hold-me-fast

We trust in His hold on us, not on our grasp of Him!

(The time in the UK is 6 hours ahead of the time in Mobile, Alabama)

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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.

Wednesday 2nd August - Diagnosis

Some of you reading this blog will also be aware of Matt & Rachel's Facebook group, #PrayForPhoebe, so you will have read much of what is written below. But for those of you who do not use Facebook, we hope this will be helpful.

We are very grateful for those who are praying for Phoebe, Rachel, Matt and Reuben, as Phoebe spends this further period in hospital. We know that their only hope is in our God and Father, and in our Lord Jesus Christ. Hence the importance of prayer, and in seeking the prayers of others.

We are also very aware that Phoebe and her situation is only one of many being repeated around the world. We don't think that our situation is more important or more deserving than any other, so if you do not want to receive these updates do feel free to opt out (unsubscribe). Our aim is to imform those who do want to pray for Phoebe, not to burden or bombard people. We know our only hope is in the Lord.

Thank you

Marcus and Jen

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We are very thankful that the medical staff have reached a diagnosis and a treatment plan.

Here are some updates from Matt and Rachel:

Matt in #PrayForPhoebe:

[about 3pm Mobile time yesterday]

This morning (Tuesday) we've met with everyone who has been working with Phoebe and have a bit of a plan moving forward.

She has C-difficile which is a Diarrhea type bug in her stomach which has potential sat dormant the last two years. It tends to only effect people who've been immune deficient or who've been on long term antibiotics. They are starting her on meds today to treat this. This is highly contagious and so please pray for our protection in order to continue her care.

Neurology has confirmed that when Phoebe glazes over she is actually having absence [petit mal] seizures. An EEG has determined this and she will begin anti-seizure medication very soon. There are two possible causes of this, her shunt could be causing the seizures and if so there is no action to take accept medicate to control. They wouldn't replace or remove the shunt as this could further intensify and complicate her current condition.

She has just gone off for another MRI to test the blood vessels/veins in her brain. While they are there they are also going to scan her spine just to check for abnormalities.

The good news is they have found nothing to indicate her cancer is back or that another form of cancer has begun.

There is also a possibility that she has an auto-immune disease but this won't be know for sure until all the labs come back from pathology.

She is still very unwell so please continue to pray. We are beginning to finally see some way forward which we are thankful for but realize this could be a long road ahead.

We are so weary. I don't want to pretend we are strong or coping well. The suffering at points feels to much to bear. Please ask the Father to give us the grace we need each day to get through. Please pray we would take each day as it comes and not over burden our minds by looking to far ahead. Just survive today. Big hugs and lots of love!

Rachel:

[about 11pm Mobile time yesterday]

They have just had to put an NG tube in because Phoebe's too 'out of it' to manage to take meds anymore. This was very difficult, taking four attempts. Another reminder of two years ago.

[about 6am Mobile time today]

Putting in the NG tube was worth it though because she had all her night time meds through the tube so was much more settled and slept though more than she otherwise would have. (They were talking about fully sedating and ventilating her but it never became necessary, so that's good).

Matt in #PrayForPhoebe:

[about 11.45am Mobile time today]

After a horrendous finish to the day yesterday with Phoebe crashing out, hallucinating and fighting a high fever (103.5f / 39.7c) and the real risk of being ventilated, we have awoken to some victories today. We needed these as we were feeling extremely weary and any victory produces some hope. It's also great to see the Father answer the prayers of his people!

Phoebe's fever broke about 5am this morning. As I write she is at 97.5f which is perfect and so encouraging as we've felt the fever has induced the seizures.

Much of her pain/soreness is relieved for now. The treatment for her C-dif seems to be helping her abdomen as she hasn't complained about any stomach pain this morning and she keeps asking for chocolate ice cream which is always a good sign.

She is also much more alert, staying awake for longer and much more coherent. Her appetite also seems to be returning.

She is still struggling with her vision, her motor skills are all over the place but she is willing to move both right and left sides which is good.

The ICU team want to put a PICC line into her arm. It's basically a more robust canular/IV which will give faster and more reliable access for medication/bloods. As she still has a long way to go in her recovery, they want it in incase she takes another downturn.

The Neurosurgeon would like to tap her shunt and do a shuntogram to fully rule out infection/faults with it but this won't be done until at least tomorrow if at all but it does depend on continued recovery.

We are waiting on the final lab reports for her cultures which will rule out rare infections and diseases. They are also going to send off bloods today to test for mosquito/tick born diseases. These are unlikely but worth being thorough.

All in all we are feeling like we can catch our breath a bit. She still has a long way to go but we are enjoying the victories of the moment and pray they continue! Thank you for standing with us. Thank you especially to our family and church family for all their help, both spiritually and practically. It's beautiful to see the body of Christ function in a crisis.

Big hugs!

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Psalm 34: 1-8 (NIV)

I will extol the Lord at all times;
    his praise will always be on my lips.
2 I will glory in the Lord;
    let the afflicted hear and rejoice.
3 Glorify the Lord with me;
    let us exalt his name together.

4 I sought the Lord, and he answered me;
    he delivered me from all my fears.
5 Those who look to him are radiant;
    their faces are never covered with shame.
6 This poor man called, and the Lord heard him;
    he saved him out of all his troubles.
7 The angel of the Lord encamps around those who fear him,
    and he delivers them.

8 Taste and see that the Lord is good;
    blessed is the one who takes refuge in him.

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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.

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