Transplant Day +40 - Our first Outpatient Appointment

Good Evening Dear Friends,

Hope this monumentous posting finds you all well!!

Welcome to Transplant Day +40 of Phoebe’s progress and it’s been quite a big day for us (not as big as Barack Obama's – but big enough!!!), as we attended our first appointment in the Outpatient Clinic which is so incredible given everything Phoebe has been through.

During the night Phoebe was unsettled from around 3.30am, she just seemed to be awake and a little upset. I wonder if she is remembering some of her time in the hospital, especially having so much close attention with both Ade and I and now back in her own bed; I’m sure feels a little lonely at times. Generally, it seems that Phoebe’s stomach has times when it is very unsettled and uncomfortable so this may be why she feels sick, along with some wind too with having an empty tummy as she is really only having fluids. Phoebe came into our room to have a cuddle with us and it is so sweet now when she says ‘hug mummy’, my heart totally melts every time.

Having been awake during the night we slept in for as long as we could, even though we had lots to do for the trip to Manchester. Ade and I eventually climbed out of bed then Phoebs and I went downstairs to make a cuppa. It's such good fun to be able to talk to Phoebe and know she understands what I’m saying; getting the training in early so she can bring her Mum and Dad a cuppa in the mornings, ha ha!!!

Breakfast took a little while this morning; Phoebe had a few spoonfuls of porridge and a cuppa and this has been consistent over the last few days. She will have just a few teaspoons but will then say say "no more" and she really means it! Her appetite has been poor again today but we are reassured that this will increase over time.

We finally headed off on our journey and luckily the roads were steady so we had a clear run. When we finally arrived it was lovely to see some of the other families who had been in the unit around the same time. Spending time talking with the other parents brings support knowing that we are not the only ones dealing with the daily regime of medicines and feeds. It’s really interesting meeting the other children and talking about their conditions although we wish the children didn’t have these awful illnesses and so having to spend the time in hospital. Parents always sound so knowledgeable when talking about their child’s condition, sounding so similar to Ade when he explains about Haemophagocytic Lymphohistiocytosis.

Finally it was our turn and I have to admit it was a strange feeling for me to be walking into Rob’s office with Phoebe, suddenly remembering the numerous unspeakably painful and emotional meetings we’ve had there before during Eleanor’s care. The time seems to have passed so quickly since Rob told us that Phoebe would need a Bone Marrow Transplant. Phoebe had a good look around and noticed the picture of Eleanor we gave to Rob; this is in a frame along with a signed Liverpool F.C. shirt from when they won the Champions League final in May, 2005 (He's a big Liverpool fan is Rob!). We often wonder how much she understands about her big Sister and over time we will make sure that Phoebe knows all about beautiful Eleanor.

Sarah, our BMT Specialist nurse, looked after us during our appointment and Phoebe was fine until she had to take all her warm clothes off to be weighed and her Hickman Line dressings changed. Five minutes later she was smiling; it truly is all about distraction techniques! Since we were discharged from the Unit last Friday, Phoebe has lost weight again and Rob expressed his concern, advising us to continue with the nutritional feeds and to aim for at least five 100mls feeds per day. Even though we have intended to give these doses it has been a little difficult if Phoebe has been sick or her stomach seems unsettled. Dealing with all the care Phoebe requires helps us to focus on the day in hand, even though it can sometimes be a challenge, to ensure all the feeds and medicines are given throughout the day. We do count our blessings that Ade and I make a good team dealing with everything as it must be incredibly difficult for a single parent to deal with this level of care or for parents who have other children as it takes up so much of the time. We want to make sure we do everything right by Phoebe and so we just concentrate on the job in hand, take everything in our stride and take each day as it comes.

We have had a few changes to Phoebe’s medicines with some of the dosages being reduced; thank goodness we have the form Ade designed as I cannot imagine how we would cope without it…some parents set alarms on their mobiles, whatever way suits I guess!!

Lynette our Nutritional specialist has returned from annual leave and now wearing an engagement ring, Congratulations Lynette!!
Nicola, who previously looked after us, has brought Lynette up to speed on Phoebe’s progress. Lynette was very supportive and gave us lots of advice regarding Phoebe’s diet and the supplementary feeds. She will update with us each week and it's very reassuring that we can pick the phone up anytime and ask for advice from Lynette, Rob, Sarah or any of the team at Royal Manchester.

Just before we left the hospital, Phoebe was due a nutritional feed; unfortunately we were only able to give her half the amount as she was very sick. Sarah kindly spent some time with us advising on the general care and, bless her, she helped to clear everything up before sending us on our way. We were slightly tentative about the journey home but just took things steady. Phoebs was fine and managed to have a little nap.

It has been a while since we visited Nan and Ed at their home so we decided to call in for a cuppa; it was a lovely feeling walking in as it’s very much a home from home. It was interesting to see what Phoebe remembered since she last visited, which has been some time, as Nan was poorly with Shingles. Phoebe is able to walk better and seems to have grown so much within a couple of months. It was great to see Phoebe and Nan walking around the bungalow and you could tell they both really enjoyed it. Mum, Dad and Gwen came over too and we decided to have a chippy tea. A wonderful end to exhausting day but we’re in fine spirits and looking forward to hopefully a good night's sleep.

Congratulations to all our friends across the pond as you celebrate the inauguration of your new present Barack Obama. Ade and I are very impressed by his persona, enthusiasm and especially his speeches. He comes across very confidently; it will be rather interesting to see the huge differences from the last one, George Dubya!! Enjoy the celebrations xxx

Tonight we have special birthday wishes for Phoebe’s God Mother and our dear friend Andrea; we hope you’ve had a lovely day and look forward to celebrating Burns Night with you on Saturday xxx

For you Andrea, thank you for all your love, care, humour and for keeping our spirits high. We are blessed to have you in our lives and we look forward to spending more happy times together in the future, bless you xxx

‘Some may see Angels as choirs in robes with gold on their heads and rainbows in their wings. More likely though, they are like caring onlookers, watching and laughing with pure delight.’

Rest well dear friends,

Much Love,

Lynn, Ade, Phoebe and Spirit Eleanor xxxx