Blessed Friends xxx

Evening Bloggers....

Good weekend so far?? It’s been a great day here at The Royal Manchester Children’s Hospital. We awoke to wonderful warm sunshine brightening the ward and there was definitely a relaxing Saturday morning feeling. It must have been after nine before everyone started their day. The ward in general is quieter and more relaxed on the weekends; however, I had a fairly restless sleep as Phoebe was awake a few times in the night along with being awoke to give her medicines. Around 5.45am Phoebe awoke and just had me in stitches as the first thing she asked for was turkey and cranberry sandwiches; it was as if she’d been dreaming about them all night!! When you speak to other parents, it’s funny to hear their tales of children not eating for days they promptly wanting very specific foods at random times of the day or night. Our parent’s cupboard has a few packets of super noodles as they prove quite popular with the children and parents if you need something quick to eat before heading back to the ward...along with a wide variety of ready meals...tonight I have enjoyed duck with noodles and hoi sin sauce...nice!!

Phoebe has been in quite a good mood today, our dear friend Estelle and I have a breakfast club every few weeks where we will meet early on a Saturday morning for breakfast, drink coffee and catch up for a couple of hours and before heading home where Phoebes and Adrian are just getting dressed!! It has been a while and bless Estelle, she brought breakfast club here today. With cooler bag, cafetiere and croissants in hand, it was the start of a really nice day. Phoebe has been relatively chatty today and Rob really wanted to see her up and about. She really needed to have her hair washed so Est and I created a mini salon in one of the shower rooms and Phoebe enjoyed spending some nice time with Auntie Est helping. Estelle and I enjoyed our breakfast in the parents’ room, Est has to be one of the most thoughtful persons I know, with such attention to detail, we are very blessed to have you in our lives Est. Gary (my brother) and Lisa also came to visit this morning and enjoyed their time with Phoebe too. Hope you guys had a nice time at the cinema and thanks for coming to visit xx

All day Phoebe has eaten and has been taking fluids well, lying there like the queen of Sheba!! As I said earlier, we are keen to get her walking again, it’s evident that Phoebe continues to have problem with her balance and it has knocked her confidence a little too. We are looking forward to heading out of the ward on Monday to visit the physiotherapy department where we can work on exercises and build up Phoebe’s legs again along with a good confidence boost!

Chemotherapy treatment went well and we will continue with a weekly dose along with lumbar punctures too keeping a close check on the white cells within the cerebral spinal fluid. Rob, Steven and the team are pleased with Phoebe’s progress, however, this is still early days and we have to take each treatment and day as it comes. There have been so many occasions in the past as some of you may know where we have dared to get our hopes up and relax a little before we are told that things have changed and this in turn brings another worry. We remain hopeful that Rob will continue to stabilise Phoebe’s condition enough to start the conditioning process before transplant.

The Hickman line is settling well and Phoebe has made no issue at all of having her ‘wigglies’ back, I do sometimes take this for granted of how good she is and its only when I sit back and think as I’m writing, how brilliant she has been about actually staying in hospital and going through everything she has. Her daily regime of medicines is tough for her but each day getting easier and we are establishing more of a routine in taking them.

After everyone had left today, Phoebe and I sat quietly and just had the best quality time together, mainly staring into each other’s eyes mesmerised by the closeness we both feel. For some reason today, whilst we were having our time together, it suddenly took me back to when I was sitting in the window on the Cheethams Ward in Stoke with Eleanor on my knee during the final few days with her, Phoebe’s hair and cheeks (which have puffed out a little due to the steroids)looked strikingly familiar to her sisters and I remember being so scared of holding her close to my face for fear of not letting her go...today I remembered that feeling and closed my eyes, facing that fear again, I just held Phoebe close....it seemed to last for hours bringing with it a feeling of contentment and closure somehow. It felt like pure love.

During our time here in Manchester, we have all become incredibly close again, not that we weren’t before but it’s the old familiar feeling of being together with the ‘troops’ and spending this time with family and friends where we all share this one priority and that is to get Phoebe better. Time passes by and before you know it, a month has flown by before we have caught up with people but our girls have been the fundamental element in pulling us all together and keeping us close. So thank you girls, you remind us of how important it is to share family and quality time together.

So I leave you tonight after a truly lovely day and the hope that we will continue with brighter days ahead. Enjoy your Sunday everyone and I look forward to catching you tomorrow with further progress in Phoebe’s Journey.

Rest easy xxxx

Lynn, Ade, Phoebe and Spirit Eleanor xxxx