Transplant Day +3 - The Road to Recovery

Hi there Bloggers,

Thanks for popping by for a further update on Phoebe’s Journey through her Bone Marrow Transplant.

We are now at Transplant Day +3 and so far things are as expected in terms of the blood results, obs. on Phoebe and daily updates from the doctors.

We were all a little tired yesterday so we caught up with a little extra sleep which was much needed. Phoebe is doing well and has been on good form, she's now on IV Paracetamol and this really seems to be helping her. Phoebs is showing a few more signs of pain with the Mucositis, which again is to be expected, and the doctors and nurses are helping us to manage this.

We have had a fairly relaxing day today; Phoebs had a little lie-in again which helped us to get ourselves ready. I did a few nappy changes and such in the night but even so had plenty of sleep.

To catch up on a few things from yesterday, we had a lovely visit from Jonathan last night (Phoebe’s Godfather). He brought some lovely hand-made Christmas pictures from Eve and Madeline, thank you girls, they are super and you both have lovely handwriting too. Phoebe was really pleased to see Jonathan and gave him a beaming smile through the window. I would just like to say congratulations to both Eve and Madeline; I understand last week was very special for you as you were officially welcomed into the Catholic Faith. As your Godparent I promise to guide you throughout your lives in faith and pray for you everyday. God Bless you both.

We had to shorten the blog last night as Phoebe was a little unsettled, although she has been well today. She tends to feel a little offside in the evenings. Today we noticed a few little strands of Phoebe's hair on the pillow. I must admit, even though we were told that Phoebe will lose her hair due to the effects of chemotherapy, it is still a little upsetting. On the positive side it will grow again when we start to reduce the medicines mid next year. Phoebe has a small area of cradle cap on her head and I will focus on clearing this for her with some good old olive oil and then Phoebe can start to wear the fabulous hats we have been collecting!

We had the folks come to visit, it was lovely to see them as always, and I'm glad to say that Gwen is feeling much better now. Gwen and Geoff brought with them the most fabulous roast lamb dinner for Ade and I which Kevin at the Tollgate so kindly cooked for us…it was mouth-watering Kevin, Thank you. Nan came by too and she kindly brought us some delicious salmon sandwiches for lunch…we are extremely blessed to have you guys looking after us so well.

Gary and Lisa also came to visit today; Phoebe really has a soft spot for Uncle "Ga-yeee" and he brought some lovely book sets for Phoebs. She will play with them for hours, oh and eat them as well!!! It's always lovely to see you guys; Gary gave me a ‘Big Brother' talk today. He is concerned that I don’t get enough fresh air so I have made him a promise to do a lap of the hospital each day when the folks arrive!!!...and I will!! Thanks for your constant love and support both of you xxx

As we said in earlier blogs it’s nice that some of you are getting more familiar with each other in the comments and talking between yourselves. It's like one big family and we always look forward to reading them as we hope you all do reading the blog. By the way, what’s all this talk of publishing it? ;o) [I think she should! - Ade]. That is very kind of you to say that, completely mad at the same time, but thinking about it I will take it as a real compliment especially if families find it helpful to read if they are embarking on this type of journey.

I hope you are enjoying the angel quotes at the end of each posting and as some of you may know, angels have played a very special role in my life since I first asked for their help with Eleanor in 2005. Since then I have been developing my relationship (which is a very working one) with them and keeping my friends up to date with the angel happenstances (as we call them!). This is when I receive help which can come in lots of different forms. Well..today I have received a lovely letter from Lisa at the Tollgate. She has a little angel story and I thought it would be nice to share with you.

Lisa has been looking for a special gift for Phoebe and, as I previously mentioned in the blogs, we are putting up some decorations in her room. Lisa asked her mum to keep a look out for ideas….Now, bear with me, Lisa’s mum works on the checkout at Tesco. A lady customer came through with her shopping and Lisa's mum noticed a lovely angel that the lady had put as part of her shopping on the conveyor belt. Immediately, she thought this would be the perfect gift that Lisa was looking for. Lisa’s mum asked the lady where this was located in the store and, whilst serving her, she told her Phoebe’s story and why it was special that the angel would be perfect. When Lisa’s mum finished her shift she entered the store to get one when a member of staff stopped her to tell her that someone had left a gift for her at the customer service desk. The lady who had gone through the check-out earlier had left the angel for Phoebe with a message to give her a big hug. Lisa finished her lovely letter by saying… it is up to us to wonder who the hug is really from….erm…we’ll take that one, thanks Angels!!! The Angel is very special Lisa and Phoebe loved it!!

Before we returned to Manchester for the BMT I had a good chat with my angels, asking them for their love and guidance to help Phoebe during her transplant and recovery and also to guide us too in helping her to heal. Maybe this is why we have felt so comforted and well looked after here. I feel a calming reassurance surrounding us, bringing any help we may need through this time. They come in all kinds of disguises…You know who you are!!!

Now, as promised…lets have a look at the comments. I will try and reply to some of you tonight and more tomorrow xx

Hi Est., hope all is well, thanks hun for having an ‘Agra’ in our honour and we have contemplated checking the delivery charges !! xx

Hi Sarah (Scott) – hope all is well with the Scott Clan. We are doing our best with Phoebe’s skin but it's difficult with the Mucositis as she isn't yet making blood cells to repair the sores. However we are looking after them with some good creams and regular nappy changes. The lights and bleeps of the machines (left) are not too bad…they have just started as I typed this!!! The only downside is that they restrict Phoebe and we like to give her as much freedom around the room as we can. Thanks Sarah for your lovely comments, prayers and positivity each day, they really help us along xxx

Hey Lissa and Family across the pond…hope all is well over there. Just to answer your question, Phoebe is now in isolation as she has no immune system. Ade and I are with her and I am sleeping in the same room. We have two additional nominated carers which are my Mum and Gwen, so it is important for them to avoid crowded public places etc. and to keep as healthy as they can. The nurses and doctors come into the room only when necessary and also try to reduce infection by passing items through two cupboards in our room. These 'In' and 'Out' cupboards have double doors and also open onto the ward. We now have to wear disposable plastic aprons when in contact with Phoebe and medical gloves when changing nappies etc. The paramount thing to remember is hand washing, constantly. My hands are a nightmare as they are extremely dry and chapped, even though I am using all the hand cream people so kindly have sent, throughout the day. Visitors are allowed onto the BMT Unit but not into Phoebe's room, and there is a family room, kitchen and laundry. On each of the cubicle door windows there is a disc that you speak through (a little similar to those that banks had in days gone by) and we are lucky to have another window too. Hope this answers your questions and let us know if you have any more. Thanks for all your love and prayers xx

Hey Den, yer blog hog!! That’s so funny :o). Regarding your question on Phoebe's obs., these can vary from every 5 minutes during transplant to every half hour during the administration of Ciclosporin (this can elevate blood pressure) to every 2 to 4 hours otherwise. However, the nurses will do her obs. whenever we request them. As for what we do when Phoebe sleeps; if it's for a nap in the day then we will tidy the room, check blog comments or take turns to see visitors in the family room on the ward. Very occasionally we may have a nap too. If it's in the evening we may watch a bit of telly and then I do the blog (right). Ade does our evening meal and then usually goes online. Hope that answers your questions. We always enjoy your comments and think you should be writing your own blog; Ade and I would be glued!!!! Thanks for your daily humour, love and prayers xxx

Hi there Matt and all the tekkies, glad you are logging on to the blog. Hope you’ve sorted the viruses now…hello to all the gang xx

Hey Lois, thanks for your comments. It will probably be early January before we are back at home full-time. We will need to bring Phoebe back twice weekly for blood tests for a while and then we hopefully will have our cares transferred to Stoke. Thanks for all your good well wishes. xx

Dear Molly, thanks for your lovely message and I look forward to receiving your gift, bless you. Hope you enjoyed your shopping at Woolies and bagged yourself a bargain, honey. Miss you, hope you are well and looking forward to Santa coming!!! xxx

Thanks Deb and all the gang for naming your Christmas Tree star Phoebe, that was lovely. May you have love and light all around your lounge!!! Lovely to hear from you all, thanks for your love and prayers xxx Love to the family

Hi there Sheena, not long to go now hun!!! Hope Isobel feels better soon and you can then try and get some rest too if you can!!…Also hope all is well with Richard and your good self and thanks for the really positive and encouraging comments on the blog!!!

Susan, Miss you so much, lovely to hear from you hun, love to all the family xxxx

Mum, Love you, thanks for your unconditional love and support and I don’t know where I’d be without you xxx

Thanks to all of you who have left messages for us, we really appreciate your love and support, will finish replies tomorrow.

Well folks another day done and the time is flying by. We hope and pray that Phoebe will continue her speedy recovery and with your love and prayers we are sure to be home very soon.

For now dear friends,

‘The strength of an Angel is her purity. Truth be known, this is the
strength of each of us.'

Wishing you a restful night and a Happy Monday, see you tomorrow xxx