5 Sept 2018 - Continuing progress

Dear friends and family

We apologise that we didn't update you on the result of Phoebe's follow-up scan, which was wonderfully all clear!  
Thank you very much to those who prayed and later enquired about it.

In July Rachel, Phoebe and Reuben came to the UK for three and a half weeks; we had a wonderful time with them. They got to see many of their friends and some of the wider family. It was great to see Phoebe eating well and with more energy than when we saw her in America last November. For three days Jon, Heather & Rosanne were also with us - so (apart from Matt busy at work in the USA) we were all squeezed in together (Jen and Marcus had to sleep with friends nearby!).

Phoebe has started at a very small Montessori school which is much more suited to her needs, with less of the noise and distraction of a busy classroom at a state school.  In her first week she enjoyed Spanish, sewing and hamster care!

We intend to close this blog now as everyone who wishes to can subscribe to Rachel and Matt's blog (see prayforphoebe.wordpress.com) where they give updates from time to time. 

We are so grateful to you all for walking with our family during such difficult times, and for your faithful ongoing prayers.

We trust in the Lord, knowing that his ways are high above our ways, and are always right and holy.

Marcus and Jen

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Thank you.

Re-scan due in six weeks

We have been delighted at how Phoebe has improved over the last couple of months since she started taking a steroid to replenish her level of Cortisol. 

Thank you for all who pray for Phoebe and family.

We have recently received some lovely photos and video clips of her, including one of her doing a somersault on a climbing frame! We have been amazed and delighted by her progress.

So with this in mind it was unexpected to receive the results of Phoebe's scan last week.

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Blog update from Rachel and Matt:

Hey folks, we wanted to give you all an update regarding Phoebe’s latest trip to St Jude’s.

Thank you all for your continued prayers for us and your ongoing encouragement and support. In so many ways Phoebe is doing amazingly well. She has gained weight which was much needed after her two most recent hospitalizations (March ‘18 & Aug ‘17), her appetite is in full force, she is full of joy and life and she is functioning as well as we’ve seen psychologically since before her treatment began in 2015. We also feel as if we are settled here in our life in the US, her and Reuben included.

The trip this week to St Jude was just another routine checkup on all the many areas of her body that have been damaged by cancer. Everything came back well except one, her cranial MRI. Two spots were found on her brain which haven’t been seen before. Now, before we go into a full panic, we’ve been assured that this isn’t necessarily bad news as these spots could be small benign lesions never seen before on an MRI and seen only now because her ventricles are open more than they have ever been in the past. The other possibility is that these two spots are in fact metastatic disease aka secondary cancer. 

The only way to know is to re-scan her in about 6 weeks (much sooner than otherwise planned), if the spots have grown in size the outcome is likely secondary cancer. 

This leaves us in pretty terrible position as we want to remain hopeful but also understand the weight of the situation. Our worst fear is the cancer coming back because it would be devastating for her and us . As I’ve already said, it’s not time to panic but oh how we desire your prayers and encouragements. We serve a loving, powerful Father who loves to give us good gifts and at the same time we also live in a sad and broken world where people suffer far worse than us. 

Please pray that our joy and hope is dictated by all Jesus has done and not our current trials! Please also pray that her scan at the end of June would come back clear. Please pray for us to faithfully endure the next 6 weeks as we wait.

Please don’t say anything to Phoebe and Reuben as at this stage they do not know.

On a very joyous side note, while Phoebe has trusted Jesus since a very young age, she is being baptized on June 10th & we rejoice that though our bodies fail, she will be with Jesus and us eternally whatever the outcome of this life. Big hugs!

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Clearly these are difficult times, but times in which we can learn and grow. 

Recently we purchased the book "God's discipline - A word of encouragement in the midst of hardship" by Tim Chester, which is dedicated to Matt, Rachel, Phoebe and Reuben! You too may find this helpful.

We trust in the Lord, knowing that his ways are high above our ways, but are always right and holy.

With very grateful thanks for your prayers - and praise to God

Marcus and Jen

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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.

9th April 2018 - further improvement

We are delighted that Phoebe has continued to improve since her spell in hospital a month ago. Her daily dose of Cortisol has had a significant impact in her life! She has more energy, an improved appetite, her general mood has improved and she looks much brighter! These are wonderful answers to our prayers for her. Praise the Lord!

Recently we had gone to bed and were woken by a phone call from Phoebe, wanting to show us how her weight had increased - and then she did five press-ups!

This past week Rachel & Matt, Phoebe & Reuben have been delighted to have a visit of close friends from Sheffield. We have seen photos of them at the beach (sunshine and blue sea!) and in New Orleans, and the children playing in a paddling pool in the garden.


It is great to see Phoebe joining in with the others and having great fun.

Phoebe & Reuben's one week Easter holiday is over, so today it is back to school - but for less than two months; Reuben will finish school on 25 May, while Phoebe will finish a week earlier, because she is due to spend the week of 21-24 May having further check ups at St Jude Children's Research Hospital in Memphis, Tennessee. 

They then both have ten weeks summer holidays: they are due to have a family holiday in California, and then Rachel and the children will come to the UK for much of July.

We are so thankful to those you have continued to pray with us for Phoebe's situation to improve!! We rejoice for the recent improvement, but there are still big decisions to be made about Phoebe's schooling.

Rachel, Matt and Reuben have been greatly helped by the recent change in Phoebe, which makes the family dynamics easier and meal times more relaxed.

With very grateful thanks - and praise to God

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.

20 March 2018 - Wonderful news

Yesterday Rachel posted this update in the PrayForPhoebe Facebook group:

A quick update for everyone's encouragement: the steroids have made a big difference already - Phoebe is more energetic, more focused, more cheerful and has a significantly increased appetite.  We were thrilled when we weighed her today to find she is 50 pounds which has been our goal weight for many months.  We're very thankful that the Lord is using this steroid hormone to bring relief to our many months of longing to see her eat and gain strength. It is also a joy to see her coping better with life - we've seen fewer tears and a greater self-confidence. It's amazing to realise that her body's inability to create its own cortisol explains, at least in part, why she has seemed so 'down' as well as so tired.

The three hormone replacement drugs she is now on, she will be on for life. But we are keen to try to reduce as many of the other medications as possible and look for alternatives through diet and natural supplements to help promote brain health and function.  Please pray for wise decisions on our part as we do our research. 

Even though we are so encouraged with Phoebe's progress, we have been deeply saddened this week to hear of the passing of two children to cancer.  One was a little boy we met in the hospital in Mobile who had stomach cancer, the other is a little girl from Yorkshire who underwent her brain tumor treatment in Florida.  We ask for your prayers for their families.  It's a sobering reminder to us that we are so blessed to still have our Phoebe with us, and that every day we are still a family of four our hearts should be full of gratitude. 

Thank you for your continued love and support. Big hugs!

What great news! We praise the Lord for such good coming out of Phoebe's last stay in hospital.

How sad for the two families who have lost their children. May they know God's help in their sorrow.

Once again many thanks to all who pray for Phoebe and family.

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.

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

____________________________________________

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.