13 March 2018 - another spell in hospital

We awoke last Sunday to read a messsage from Rachel saying that Phoebe was in hospital.

So it was comforting for Marcus to be able to speak with Phoebe, Rachel and Matt briefly on Sunday afternoon; it was lovely that Phoebe recognised him and was able to chat. Below are some more details.

Rachel - Facebook - Sunday 16.14 GMT

We are in the hospital with Phoebe again this weekend after an unusual episode yesterday afternoon where she became very disorientated, distressed and unable to speak. Thankfully within a couple hours her speech and awareness had returned, but given the complexities of her medical history we know that any time there is neurological deficit they are going to run a bunch of tests and we are going to be in for at least one night if not longer! We are waiting on the neurologist to arrive this morning and no doubt he will order an EEG. She had a CT scan last night which looks good and shunt seems to be working fine but neuro-surgeon may still want some x-rays to check for no kinks in the shunt tubing. As ever, please pray for Phoebe and for us. Thank you so much.

Rachel - Facebook - Monday 16:30 GMT

Phoebe's new wheels!

Phoebe is having a spinal tap this morning to compare levels of protein in the spinal fluid with those found in August, this can suggest brain inflammation or leakage which might suggest Saturday’s episode was a further episode of SMART syndrome. They have also found that her levels of cortisol are very low which could also be a cause for Saturday’s episode and certainly is an explanation for why she is often so exhausted and why it’s so hard to wake her in the mornings. So to add to the current cocktail of daily drugs, she will need a daily steroid hormone to replace what her adrenal gland cannot produce. This also stems from pituitary gland damage from radiation, the same reason her body cannot produce her own growth hormone and thyroxine.  The original brain radiation treatment in 2015 massively increased her chances of surviving the medulloblastoma but boy its long term side effects are cruel and extensive.

Yesterday evening both Jen and Marcus had a brief chat with Rachel and Phoebe, who was in the process of having an EEG. Again it was good to talk and catch up on their news.

Two new activities

In contrast to the above, this year Phoebe has started two new activities which she greatly enjoys.
She was given a tricycle for Christmas which means that she is able to ride without the struggle of having to keep her balance. See photo above.

The other is Equine Therapy, which she loves and involves brushing the horse as well as riding it it. In the video clip you can see her riding at a trot for the first time.




Once again we thank you for your ongoing interest and support, and ask again for your prayers for the family. We are not there to help, but the effects of our prayers span the ocean!

Marcus and Jen

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6 December 2017 - news from our visit

We promised an update after our visit to the Lollars in Alabama, so here we are, asking you again for your prayers for the family and thanking you for your ongoing interest and support.

We thoroughly enjoyed our first ever visit to USA; it was great to be able to share in Lollar family life, be with them for Thanksgiving with Matt’s extended (and extensive!) family, visit the children for lunch at school etc.  We accompanied them to Memphis for 3 days where Phoebe underwent all sorts of tests at St Jude Children’s Research Hospital which has taken over her care from Sheffield Children’s Hospital.  Her serious illness shortly after arriving in USA had delayed this.  Wonderfully, the scans showed that she remains clear of cancer which is a great cause for thankfulness.

But her damaged brain and body give her many challenges every day, and Rachel and Matt need great reserves of wisdom, patience and resilience to help her with them.  The biggest challenge is her almost complete lack of appetite and consequent unwillingness to eat very much at all; she seems to exist mostly on chocolate milk, small bowls of cereal and bites of apple dipped in peanut butter.  Even the smell of some family meals makes her want to leave the table.  She is very thin and frail as a result, crying out when she bumps into things or has her nightly injection of growth hormone.  Since our return home we’ve been delighted to hear that Phoebe has had 5 consecutive days without vomiting and has had a better appetite, so please pray that this improvement will continue!!

Given her lack of energy, poor memory and short concentration span, school work is a real challenge. We’d be grateful for your prayers for her class teacher to understand and be able to allow for her needs. 

On 13^th December Phoebe and Rachel will be in Memphis again for Phoebe to undergo a day of psychological testing.  The flights and accommodation are provided and organised by St Jude’s, a wonderful provision.

Christmas follows hot on the heels of Thanksgiving, hence an appropriate photo of Phoebe and Reuben in front of the Christmas tree!

Thank you for your prayers for Phoebe, Rachel, Matt & Reuben. 
We wish you God's rich blessings as you celebrate the birth of our Lord Jesus.

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.

23 September 2017 - Update on Phoebe

It is now a month since we last gave an update about Phoebe. We have received several enquiries about her so feel the need to write again.

Phoebe in her school uniform

We rejoice that Phoebe is no longer in hospital and is able to attend school and take part in family life. However, the seizures and the treatment continue to have an impact on how Phoebe is able to function and cope with life.

Phoebe has little interest in her food, doesn't yet have a friend at school, and has lost her 'sparkle of joy'.

So Rachel and Matt ask, please pray for:

• patience for us as parents – everything from dressing to eating to reading to simple conversation takes way longer for Phoebe than it does for Reuben. It already feels like he is her older brother, not younger.
• for Phoebe to make a few good friends at school
• for us all to cultivate a spirit of gratitude
• for us to adapt well to a new culture and new systems
• for Phoebe to get the right support in class so that she can enjoy learning
• for Aubreigh Nicholas, a little girl in Mobile who has been diagnosed with an inoperable brain tumour and has a slim chance of survival, and her family.

Thanks y’all! 

We are making plans to go and visit Rachel, Matt, Phoebe and Reuben - and so be able to give them all big hugs!! Please pray that we would be a blessing and encouragement to them all.

Thank you and blessings

Marcus and Jen

PS. We do not expect to make another posting until December.

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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 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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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.

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
____________________________________________

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
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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.