Transplant Day +54 - Recovery at Home - Counting our Blessings

Good Evening Everyone,

Well, how are you all? Thanks for joining us again on Phoebe’s Journey and today has been a great day with Phoebe’s progress.

It has been a very tiring day, therefore it will be a short blog as it’s now 11.20pm as I begin to write tonight’s posting, hope you don’t mind!!

Due to the weather, up to 8.45am we were still a little unsure whether to head up to Manchester given the national weather reports but after contacting the hospital and speaking with Sarah, we decided to head over and the roads were probably the quietest we have experienced in all the times during our travels up to Royal Manchester…isn’t it ironic!!!

Phoebe has been brilliant today although a little quiet, she has been a little tired but nonetheless busied herself mooching around the clinic waiting area and around the house when we arrived home later this afternoon. How pleased am I to be saying we are home due to the fact that I was dreading Rob and Sarah saying Phoebe will need to stay in if she had lost more weight. Of course it is without saying that if Phoebe needed to stay we would have done so without any hesitation but didn’t feel up to it at all, not sure why, this was just how I felt.

Attending the clinic this morning, I was praying on the way that Phoebe’s weight would have stabilised and luckily it had. Rob is very pleased with the results from the weekly blood tests; blood counts are fabulous along with Rob’s overall examination. Phoebe’s weight still concerns him somewhat but…..he reiterated to Adrian with the help and advice of Lynette the dietician, the process which Phoebe is experiencing regarding her lack of appetite is completely normal and is extremely common in all children of Phoebe’s age who have received a bone marrow transplant. As I have said before we can cope with the day to day issues of sickness and loss of appetite so long as this is all in the realms of a good recovery.
Rob has increased the Ciclosporin which is an immunosuppressant drug and this has side effects of increased hair growth with a possible change of colour. Over the past couple of days Phoebe’s eyebrows have become very dark which looks quite unusual on her as we are used to seeing Phoebe quite fair. Sarah and Rob reassure us that Phoebe’s hair colour will revert back to blond once we have reduced and finally completed the Ciclosporin treatment.

As I mentioned above, Lynette our dietician attended the appointment with us today and looking at the observation charts for last week, Lynette and Rob decided to increase Phoebe’s nutritional feeds to 150mls 4 times per day and 100mls 3 times per day to make a total of 900mls in total. We also discussed the option to have an electrical pump that can be carried with you in a rucksack instead of gravity feeds. One of our concerns why Phoebe is vomiting after feeds is that it may be running too fast, so, as a start we are slowing the feed down to enable it to flow over an hour and hopefully this should help. Looking after any child is a full time job but managing all the feeds, along with medicines, mealtimes and the regular cares, Ade and I are becoming specialists in logistics!!

During the clinic appointment in Manchester, one of the Father’s who’s daughter was also on the ward at the same time as Phoebe came into the clinic room and both Ade and I instantly thought he looked very tired, he speaks a little English and made a little comment that Phoebe looked good but then very briefly communicated the worst news possible. Ade and I just knew by looking at him and also both getting the same sinking feeling in the pit of our stomachs that his daughter had passed away,…it was yesterday. Ade and I were both shattered by this news. It brought home to us the understanding of risk associated with such a procedure. Phoebe has done so well and made such an immense recovery, how lucky we are that she has made it through it, never mind the fact that she has been incredibly well considering the treatment regime of the chemotherapy and immunosuppressant therapy. We stayed for a while after this news to just gather ourselves; everyone from the clinic had already left so Ade and I we could talk about how we felt. After a little while Ade walked up to the pharmacy dept to check on the meds and I felt the need to go and take a walk with Phoebe and get some fresh air. Phoebe was all wrapped up and ready for the walk as I was and it gave me some time to say some prayers for her, asking for her to be guided on her way home and to find peace and comfort, especially for her family too. Those initial few days after loosing your child are so incredibly difficult as you feel so suffocated with the overwhelming feeling of emotion and grief….even after four years since Eleanor, that feeling can return in a second.

Ade and I were very quiet on the drive home, both of us in contemplation of the past few hours. We were so pleased to be heading home but at the same time thinking of the family in Manchester. Hence to say it left us very drained for a while and yet so incredibly thankful to be here with Phoebe.

Experiences like today always help us to remember our many blessings throughout each day and to be able to sit here and share this day with you even though it has been a good and sad day is one of those blessings.

We look forward to a new day tomorrow with renewed energies and a visit from Gary who is joining us for breakfast in the morning, a great way to start the day!!

Wishing you all a restful sleep, dear friends….


To end tonight, I would like to dedicate the angel blessing for our friends in Manchester. You are in our thoughts xxxx

‘The watchful care of angels must be like a nanny who has come to
love another’s child as her own’

With love
Lynn, Ade, Phoebe and Spirit Eleanor xxxx