Transplant Day +7 - One week since the Transplant!!! - The Road to Recovery

Good Evening Dear Friends,

Hey, thanks for taking the time to come and see how Phoebe is doing. We have received an amazing amount of positive feedback and messages, especially over the last days, talking about the impact the ‘blog’ is having on everyone. Well, we are overwhelmed by the amazing support everyone is showing to Phoebe and us and this is why it makes the blog so special as you are all a part of it, being ever present on the journey with Phoebe.

Wow, isn’t time moving fast?!! Can you actually believe it has been one week since Phoebe received her Transplant? The days seem to fly by here and, I’m pleased to say, with every new day we appear to see a great improvement with Phoebe. Of course, there are times during the day where Phoebe is uncomfortable but, considering what she has been through, we can’t expect too much of her.

This morning was a fairly early start at 5.15am. From the moment I heard Phoebe’s first murmur, I just knew she was feeling sick. The Mother’s instinct is incredible, and I was right. Phoebe’s sickness is probably due to the mucositis that is all the way from her mouth, down through her gut and then out of her sore little bum. These little bouts of sickness are daily but she copes very well with them even though it's awful seeing her upset. They don’t seem to last long and she is right as reign after. Phoebe hasn’t had much of an appetite recently, although she is trying the odd teaspoon of cereal. Today she ate some bread and butter and half a pot of yoghurt, which is fantastic!!

On the ward round today we asked the consultants about their previous cases to compare Phoebe’s progress and, as we are reminded, each child is different going through the BMT procedure. They assured that Phoebe is making an excellent recovery and they can expect her to continue on this path. We also discussed how well Phoebe appeared to be managing her pain level and after talking with one of the doctors, Helen, we decided to reduce her Morphine intake from 2ml to 1.5ml per hour.

By early afternoon, we could see a change in Phoebe and she became really uncomfortable and was unable to sit on her sore little bum so we increased the level again to 2ml. She was much happier with this when she awoke from her nap. For the first time in a week, she has sat in her high chair and played on her floor mat, next to the cot. Even though Phoebe hasn’t walked for over a week, her legs are remarkably strong and she surprised us again by wanting to stand. We will encourage her to do what she feels comfortable doing but be mindful that she may become tired easily. Phoebs has been doing lots of counting today and she really likes singing the alphabet song; she’s been on good form!!

The folks arrived today, determined as ever to get through this time together and it always helps with bacon and cheese oatcakes in tow! Gwen also brought some bacon and egg sarnies which were delicious too. How good are our Mums? Mum made us sausage and pork casserole for our dinners tonight and we have sweet & sour chicken from Gwen and Geoff for tomorrow. Thank you so much xxx - You'd better get ready for the flurry of orders for your delicious food!!!

Gary came today and, bless him, he brought Phoebe a lovely little Pooh bear with angel wings and a halo. She loved it and just wants to kiss it and everything else whilst she’s at it!! I have been giving her lots of kisses too from everyone reading the blog!

Today has been a fairly steady day and all was chilled until Gary, doing his big brother bit, practically ran Dad and me out of the building for the daily walk. Daily walk?….more like a hearty jog; I’m only 5” 2’ you know! ;o) He said he wanted to give me a cardiac workout too; steady now..one bit at a time. To be fair I am so unfit but catch me in the pool and I’d really give him a run for his money!! Always good to see you Gary and thanks for all your love and support. Hopefully, we look forward to seeing Lisa and your good self at the weekend.

As we approach Christmas, the nurses and staff look forward to the annual visit from local celebrities. There was a little anticipation and excitement wondering who would be gracing our ward and we very kindly had a visit from actor Will Mellor, actress Shobna Gulati and boxer Jamie Moore. They all took the time to visit each patient and their families and brought with them some lovely gifts. Phoebe received a very cute pink Piglet (the size of Phoebe!!) and some DVDs. As Phoebe is in isolation, we popped outside the room and had a chat with them on the unit. As she was asleep, we showed them some lovely pics of her and Eleanor and had a brief chat about our girls. Bless him, Jamie Moore got a little upset and had to walk away for a while; I dare say it really hits home when you have children yourself. It was nice to meet them and they took time to talk with us and explained a little about the charity work they participate in. By the time they had finished their visit, Phoebe had woken up and she gave them a lovely smile as they peaked through the glass to wave Good-bye. We gave them details about the blog and you never know they may join our journey too!!!

Tonight some dear friends, Theresa, Helen and Phillomena came over for a visit. It was a real pleasure seeing you all and that you brought lovely news, messages, special gifts and wonderful cards galore. Loved the hand-made cards kids too, bless you. The wax rubbing of the Christmas candles were brilliant!!! So sorry Bradley that you were upset about not being able to come and visit Phoebe, but Mummy gave me a big hug from you and I will pass on all your kisses in the morning sweetheart xxx

It was so great to see all the girls and they were telling me about the impact the blog is having. We are so surprised by the fantastic, encouraging response; it has been totally unexpected. It's a real pleasure to sit and relax at night, telling you all about our day. We find it rather amazing that so many people are interested, some even hooked, and they await our daily updates!!!

To Pat and all my friends at the Prayer Group, thanks for remembering me and sending the little chocolate parcel. Hope you are all well and I look forward to catching up with you all soon xxx

Hi to the all Langleys: Auntie Pat and Uncle ‘H’ thanks for the lovely hamper, voucher and gifts; you are all too kind xxx

The cards, messages, love and prayers we receive from everyone continue to help us through this time and without you all I’m sure we would be in a very different place.

Just under a week now to Christmas, hope all you 'Bloggeroonies' have written your letters to Santa!!!

Ade and I really enjoy reading the comments and it’s great to see the ripple effect occurring between you guys. This keeps us ‘courageous’ to face each day, ‘patient’ until we can return home, ‘accepting’ of the journey and ‘smiling’ reminding us to keep our sense of playfulness and humour.

I would like to dedicate tonights Angel Quote for Maria and Family…please accept our love and prayers on your recent sad news...in memory of your special Nan.

‘In the lights and glimmer of modern Christmas decorations we see a tiny speck of the brilliance that is the reality Angels see, share and return to when their task on Earth is complete. It’s a brilliance we can see one day for ourselves when our task is done as well.’

For now dear friends…see you again tomorrow for another instalment.
Wishing you all a restful sleep xxx