Phoebe's Progress....

Good Evening Everyone,

Firstly, thanks so very much to EVERYONE for your continuing messages of support for Phoebe since our last visit here to the blog and our very swift admittance into The Royal Manchester Children’s Hospital.

As some of you will know Phoebe received her first Bone Marrow Transplant in December 2008 and since this time we have thoroughly enjoyed returning to normal life. I decided to take a break from writing the Blog for a while but feel the need to update you guys with our current news.

For the blog this time around, I will be keeping you all updated with a brief account each day of Phoebe’s progress so not to feel too much pressure to write a thesis each night...of course most of you guys will know I enjoy writing the blog so much I could sit with you for hours and keep typing until the early morn...but for now..

Phoebe has spent the last 18 months recovering well and having fabulous times getting out and about with friends along with our visits around the country in our beloved caravan...others affectionately calling us ‘shed-draggers’!!!

Rob our consultant here at the RMCH has been watching Phoebe’s bloods and noted that overtime her donor cell count has started to reduce and we now find that Phoebe has a tiny percentage of donor cells left therefore requiring a further bone marrow transplant. Continuing with same donor and will have to wait a further two years before we have the chance to meet.

Phoebe has been incredibly well with no admissions since her transplant until Sat 3^rd July when Adrian and Phoebe came with me to Chester for our cousin Gemma’s 'Hen Do' – a wonderful day, thanks Gemma and it was great to meet all the girls! We treated ourselves and stayed in a lovely hotel but as we arrived both Ade and I noticed that Phoebe was unusually quiet. Ade planned to take Phoebe down to the river and maybe take a boat ride and a walk around the castle but over the course of the day, Phoebe had started with sickness and went on to develop a rising temperature up to 40 degrees during the night. Rob had asked us to visit the clinic on the Tuesday so we were pleased to be able to see him and ask his advice. On our visit, Rob checked Phoebe and asked us to return on Friday for results of the blood taken for routine testing and to check her donor cell level again.

Over the course of the following week, Phoebe didn’t seem her usually perky self; she would pick up a little then have bouts of sickness. Eventually whilst on a day out at Alton Towers with the Oncology team from Cheethams, we felt the need to contact Rob as Phoebe was still not well and started to develop a rash. Rob called us in to the hospital on Friday as planned and he arranged to see us again on Monday. We had noted that Phoebe seemed to have problems with her balance when walking, thinking maybe she could just be a little weak after all the sickness and lack of appetite but it became more evident. By Monday morning, Phoebe had been sick twice in the night and at 7am she came bouncing into our rooms like she was ‘punch-drunk’. Immediately I took her downstairs to assess her and found Phoebe was having visual disturbances where she was unable to control her eyes. As many of you may remember, this was probably the scariest and most worrying time with Eleanor as she never recovered from this during her illness with HLH. You could probably imagine my sheer panic watching Phoebe look worried and the tone of my voice probably didn’t help. However after a few moments, I gathered my thoughts and contacted Adrian. We promptly called our local hospital children’s ward and Phoebe was admitted immediately.

Thanks to the team at Cheethams for their incredible support and the care received was superb, blood tests were arranged and Phoebe’s local consultant (who has since changed from Simon Parke as some of you may remember ) Dr Kumar, a lovely chap who was incredibly attentive and helped relay some of our fears. An ambulance was arranged and off we went to Manchester.....the memories came flooding back.

Ready and waiting for us here on Ward 84, the staff welcomed us and helped to settle us in....a great team, we are in safe hands!!

Initially after doing preliminary tests, we thought there may be evidence of post viral meningitis but this has now become apparent that Phoebe’s condition of HLH looks to have been triggered by the virus and sickness we noted in Chester. Her sudden deterioration has shocked all of us including the doctors and staff here at Manchester.

Since our admittance, Phoebe has received a lumbar puncture and we have seen white blood cells in the cerebral spinal fluid (fluid that protects the brain underneath the skull). This may be remnants of the virus but her immune system has been triggered and therefore this has now caused the HLH to appear in the brain, one of the symptoms being visual disturbances. Phoebe has since started on some steroids to reduce any swelling and immunosuppressant therapy to begin the process of turning off the immune system.

Eating and drinking are no problem as on of the side effects promote a healthy appetite which in Phoebe’s case is of course no bad thing... I on the other hand will be steering clear, although it is rather hard when we have been receiving wonderful home baked cakes and cookies from our dear friends...thanks guys xxx

We have to admit that these are very worrying times and tomorrow Phoebe will face another lumbar puncture to check the level of cells, however, this will now be done under general anaesthetic and Rob will also take the opportunity to insert more medicines straight into the cerebral fluid in the hope of stabilising things further.

So for tonight, I hope we have brought you a little more up to date and as in our previous blog postings, please feel free to leave any messages for Phoebe and I know some of you may have questions relating to Phoebe’s treatment and medicine...over to you Ade, many of you may know he has some great ways of explaining the more detailed side of things relating to the HLH....so for now folks, thanks for stopping by and catching up with us.

We will let you know Phoebe’s progress tomorrow....

All our Best wishes and Congratulations to Angie, Shane, Spencer and Oliver in Australia on the wonderful news of their new arrival Lewis...Well Done Angie...Will be in touch...God Bless xx

Congratulations to our neighbours Joan and Phil who have become grandparents to Jack...Congratulations and all the best Kate, Andrew and the boys.

To Liz and all the Scott Family....you are in our thoughts and prayers.

Your love, thoughts and prayers keep us strong.... Thanks everyone.

With blessings

Lynn, Ade, Phoebe and Spirit Eleanor xxxxx