Transplant Day +19 - Phase III - The Journey Home

Hi there all you lovely Bloggers,

Welcome to another update from Royal Manchester Children’s Hospital.

It’s been a great day here with much to tell you on Phoebe’s progress. Having had a fairly settled night, only getting up a couple of times, I felt a little more refreshed. Phoebe was awake and just to lie in bed and listen to her chattering away is one of my favourite pleasures of being a mum to Phoebe and the same with Spirit Eleanor.

Phoebe’s grasp of language is astounding us more each day as before we were admitted for the BMT we discussed in the meetings about Phoebe’s development. Sarah advised us that Phoebe’s development may slow a little as she may not feel like doing anything during her treatment but of course, to our surprise, she has done the opposite and thrived! Even though the initial thought of coming into hospital and enduring a period of isolation was daunting, it has incredibly had the opposite effect. We have indeed gained so much from having this concentrated time together with Phoebs, as well as the incalculable support of our parents, family and friends.

We had a very relaxed breakfast and Phoebe ate really well having a good half bowl of Cheerio’s and three small squares of toast. Nothing makes me happier than seeing Phoebe eating and drinking well and I think I speak for many a parent there. Thinking about it, that’s why our parents, friends and family are doing everything they can for us, bringing good hearty food and support each day. Thank you, we feel so truly humbled and as I write this I feel quite teary and overwhelmed when I think of how you have all looked after us. Thank you God for them all xxx

Nuti our doctor came to see us today on the ward round and was very pleased with Phoebe. The blood results have been as expected, fluctuating up and down a little, which is completely normal considering the use of GSCF. We are pleased to tell you that it looks as though Phoebe has engrafted as she is successfully producing blood cells again. This will take a fair while to build up but is a remarkable start nonetheless.

The consultants and doctors have decided to cease the IV nutrition and meds. and move Phoebe back over to oral meds. again. She is still incredibly tender around her groin, stomach, chest and underarms so we need to be very mindful and prepared when moving or holding her. Otherwise, she is doing amazingly, oh and was wilful when it came to taking her meds. today. Hmm, the first dose she took went very well then the monkey business started!! We will have to work on this and maybe change our tactics!

As the morning continued with unrelenting blessings, we had a wonderful visit from Simon Parke (left), our Paediatric Consultant in Stoke. It was a privilege to see Simon, especially as he is leaving for a new post in Exeter that begins next week. Simon was really thrilled with Phoebe and was so pleased to see her looking so well, especially after she's had a bone marrow transplant. He couldn't believe how well she was, looking at her. We will stay in touch with Simon, keep him updated on Phoebe’s future progress and hopefully pop in when we are next down in Devon. The care we have received as a family from Simon has been absolutely phenomenal as he has seen us through the worst of times in our lives and has now begun to share happier moments. Thank you Simon, our lives are richer for having you with us on this journey and we wish you and your family all the very best on your new life down in the South West.

Not just one fabulous visit; next came Helen and Manju standing at the cubicle door. Phoebe’s face just lit up, it was magical. It was absolutely brilliant to see you both today, thanks so much for making the trip up to see us and thanks for the lovely gifts, you are too kind xxx.

It was a complete hat-rick when the troops then arrived. Thanks so much to you all for coming again today and it was nice to see you too Nan. Not only did we have tasty sandwiches but Mum and Dad had made some ‘Lobby’, aah just fantastic!!

The troops came in and Phoebe was so ecstatic to see them that she forgot we were here. This was so reassuring really as it gave Ade and I some time to venture out. We all headed down to the Trafford Centre for some time out but as it was very busy we realised that it was far too soon to be mixing in large crowds. We visited just a few shops, mainly for shoes, and then decided to have coffee and delicious cake that Manju so very kindly treated us all to. It was a brilliant day seeing you all as it keeps our spirits high and helps us to face another day.

By the time we returned, Phoebe had entertained everyone and was nearing a nap. Phoebs had Dad in stitches whilst we were out; he told us that when Gwen hid behind the curtains Phoebe just took one look and said "curtains" so clearly that it really tickled him. She picks up on everything so quickly. Phoebe was so overtired by the time dinner arrived that she fell asleep on my shoulder. It was pure pleasure to have some cuddle time as nothing comes close to that feeling.

Phoebs awoke later on and really enjoyed an omelette, cheese sticks and fresh tomato which is one of her favourite meals. She ate really well, particularly as she was being distracted by the one and only Iggle Piggle!!

Andrea, one of the sisters on the Bone Marrow Transplant Unit, disconnects Phoebe from her IV nutrition for the last time!

Phoebe has since settled well so far tonight, after being sick when I mentioned medicines!!! She made bubbles with one of her oral meds. and then wore her first dose of Penicillin!!! Phoebe and I had a chat about her medicines and I explained to her how important they are. I know she understands to a certain degree so I did my best and we will try again tomorrow. Either way, Phoebe will have to start taking the meds., in particular the Penicillin as she will be taking this every day for the rest of her life. It will be a fairly heavy regime of drugs for her to take each day over the next few months and we need to make this procedure as stress-free as possible.

It's lovely to hear from you all in our comments section and thanks so much for all your love and support each day. We would also like to welcome our new bloggers joining us today.

Parsnip, thanks for your vote of confidence to continue to blog when we return home; it's been really entertaining reading your comments each day and enjoying the banter between you all. We will plan a gathering when you head over next year for definite. We would like to wish you both a Happy Anniversary too, nine years…it goes so quickly. Ade and I will be celebrating our 10th Anniversary next year. Please can you email me at lynn@oldfields.net so that we can chat about the very beautiful gift you sent. xxx

Just a couple of mentions…thanks to Jonathan for your help to resurrect my rice on the phone last night. Ade said it was cooked to perfection. (sorry..I took that one if you don’t mind!!!

Hey Heidi, great to hear from you. Welcome hun and thanks so much for your letter; fab house!!! Hope you are all well and we look forward to catching up with you all soon.

During our first week here at Royal Manchester our family counsellor, Angela, unfortunately slipped and broke her leg. We have really missed having you around with your wonderful calm energy. We’re so glad that you have managed to read the blog and keep updated with Phoebs progress and we know that you would have popped by each day to see us. Thanks for your encouragement and support Angela and we wish you a very speedy recover. We look forward to seeing you for a cuppa on our weekly visits to clinic. xxx

For now dear friends…

‘A wise person accepts the help they are offered. A foolish person swears they will do it for themselves. A wise person shows gratitude. A foolish person needs the glory. A wise person dances to the rhythm of their angels. A foolish person trudges to nobody’s drum.’

Wishing you all a restful sleep.

With love,
Lynn, Ade, Phoebe and Spirit Eleanor xxx