Transplant Day +20 - Phase III - The Journey Home - Happy Hogmanay!!!!!

Good Evening Everyone,

Welcome to the blog this evening on this cool and frosty New Year's Eve.

Today, like most days in the past week, has been fairly busy and after a good night's sleep I awoke this morning feeling refreshed. Phoebe was chattering away but I just had this feeling to get up as soon as I awoke and there she was, bum in the air with one of her IV lines loosely around her neck…aarrgghh. Well can you imagine the panic level inside!! It was difficult to turn her around to lie on her back to change her nappy. Phoebe’s stomach is so tender that she was a little upset but before I knew it she was busy trying to look at me from upside down through her legs again; I could tell she was in a great mood ready for the day.

As Phoebe was now without her IV supplement feeds we had breakfast a little earlier in case she felt hungry and I’m glad to say that she had a wonderful amount of Cheerio’s and some toast. We would be lying if we didn’t say there is a little anxiety about her eating and drinking enough but we are reassured that this is early days and we all have to get used to things again. Phoebe’s tummy may also take some time to recover from the Chemotherapy and all of the intense treatment.

Maged and Nuti came around to visit Phoebe and continued to allay our concerns about Phoebe’s tummy tenderness. They organised an ultrasound scan for us and, as Phoebe’s stomach needs to be retrained again, she is holding quite a lot of wind which we can see is extremely painful for her. The doctors have prescribed something to help her and it’s just a case of getting this down the hatch…I tasted it and it’s like sipping salty syrup. We can’t blame Phoebe for not wanting to drink it!!!!

The morning continued very relaxed and we received a very unexpected visit from Rob Wynn’s secretary, Bev. She came to ask us if we knew of a donation that had been posted to the hospital. We were amazed and even more surprised to learn that there were two more cheques totalling several hundred pounds. We were astounded at the immense generosity of these wonderful people who we don't know; it made us all cry with overwhelming gratitude and left us speechless for most of the morning!! Thank you so very very much, we will be in touch personally to thank you all.

Wow, it brought such amazing positive energy into the room and this continued when we had a visit from Pam Lockett (above), our family counsellor from the Donna Louise Hospice. It was fantastic to see you Pam, thank you so much for making the trip. Pam was thrilled to see Phoebs looking so well and playing in her cot. After a while Phoebe took a nap and really settled and this gave us chance to have a good chat. Pam continues to be an incredible support to us and has been with us from our initial visit to Treetops. Just being able to have time with Pam and talk through your emotions when dealing with such a heavy heart has helped both Adrian and I to heal immensely. The hospice not only provides respite for children with life limiting conditions and their families as it also helps families even after a child has passed. This is why we appreciate the care and services of this wonderful place and we are so lucky to have this in our local area. It’s a paramount asset to our local community and we continue our fundraising to help keep this hospice open. A special hello to all the gang and we look forward to catching up with you all in the New Year.

As we may be heading home for ‘weekend leave’, Mum and Dad have so kindly started a task of deep cleaning our home. Margaret our cousin also popped along with her marigolds to help. What have we done to deserve such wonderful family? Thanks so so much to all of you for your help, we do appreciate everything you do. As Mum and Dad Breeze were in Stoke, Mum and Dad Oldfield came for a visit, bringing our wonderful Nan too. Lovely to see you all, and thanks for your help today. The sandwiches and fabulous steak dinner were delicious…xxx

Rachel our nurse helped us today in changing Phoebe over to her oral medicines. We know it may be a little traumatic to begin with so we will work on our tactics again to make it as comfortable process as possible. Before dinner, Rachel came to disconnect all of Phoebe’s lines from her machines for the last time (above), freedom at last!!! The room was quiet without all the beeping, so I took the opportunity to relax on my bed with Phoebe and we played with jigsaws together…for about 30 seconds before Phoebe became really tired. I think it was a culmination of having the oral meds. and the tenderness in her tummy.

Phoebe didn’t have much appetite for lunch, so we have now decided to give Phoebe snacks during the day and to have a meal at night. This idea worked today as she happily tucked into her mash, chicken and broccoli dinner.

Something that quite surprised me today was how I was feeling when Phoebe was ready for bed to settle down. We needed to change a sheet on Phoebe’s bed and, as she was quite tired, I took the opportunity to have a cuddle. We sat on our bed and before I knew it, all the feelings I had of holding Eleanor when we returned to Stoke at the end of her life came flooding back. We had started to take all of the lines away, then all the machines disappeared and the bleeps finally stopped. It may have been the silence, I don’t know, but it took my by complete surprise. It was a little overwhelming so I popped Phoebe into her cot as she was very settled. After a while, the feeling subsided. Ade and I were talking about why I felt like this, suddenly realising and most ironically, Phoebe will be the exact same age to the day on Saturday as Eleanor was when she passed. This time Phoebe will go home with us; what a fabulous start to a New Year!

And finally, we received a call today from our dear friends Berge and Estelle who decided to spend Hogmanay with us this year here at Royal Manchester…how fantastic is that? They have not only braved the fog and cold but arrived this evening, with a buffet fit for the Queen, obviously with Estelle being the closest we have to royalty 'an all.

For everyone...

‘Every visible thing in this world is put in the charge of an angel.'
Saint Augustine

On behalf of Phoebe, Spirit Eleanor,
Ade and Lynn,
Berge and Estelle

We would like to wish you all a very Happy, Healthy and Peaceful New Year xxx