Friday, 19 May 2017

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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