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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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.