Transplant Day +28 - The Road to Recovery

Dear Bloggers,

Good Evening and welcome everyone; we hope all is well and thanks for joining us on this continuing journey with Phoebe following her Bone Marrow Transplant.

Our little angel has had a very tiring day today and again she has done us so proud with how far she has come and how she copes with all this!!

Phoebe understood the plans for the day and this morning she wasn’t upset at all when we arrived at the hospital in Manchester. It was nice to see the doctors and nurses although we didn’t really plan on staying unless advised.

Phoebe had bloods taken first thing and then a regular weight check. The possibility of staying in at Manchester depended on whether Phoebe had lost any weight and again since Monday she has. Nuti was happy with his observations but was concerned about her weight and spoke to Rob. Our nutritionist Nicola came to see us and was also a little concerned but advised us on feeding supplements through the NG tube to enable us to have the rest of the weekend at home. Nicola has given us different flavoured nutritional drinks, Phoebe tried and quite enjoyed the chocolate, and we will see how she is this weekend. Rob has advised us that we will need to stay in next week if Phoebs loses anymore weight therefore we have been allowed home until Monday. The plan is to get Phoebe’s weight back on track and bulk her up. The weight loss may be due to several things, possibly some mucositis still present in her stomach along with re-training it to take food again, after not eating regularly for two weeks following the transplant. With this in mind, we also need to take into consideration that she still has the Norovirus; this will take a little while longer for Phoebe’s to clear due to her immune system being still low.

Rob reassured us and we finally left for home. Phoebe hasn’t had much of an appetite again today and didn’t really want to drink either. It is easy to see how children can easily fall out of the habit of eating and drinking after feeling unwell.

Just feeling so tired on the way home, I took a nap but was suddenly woken by Ade shouting me as Phoebe was being sick, aaah bless her, she was a little upset especially about being woken from her nap too, again the tube had come out. We contacted Cheetham’s and Becky just told us to come along. We have open access to the hospital and staff are aware of Phoebe’s treatment.

Becky swiftly popped the tube back in; Phoebe was definitely aware of what has happening and this time was a little upset but again she coped remarkably through it…we were on our way home again.
We did get as far as the corridor and towards the exit before Phoebe was sick again; it was late and there was nobody around as we were leaving but all of a sudden a nurse came towards me and another gentleman…angels to the rescue. Amanda from the ward came to help clean us up…and the corridor!! Thanks very much for your help, it was greatly appreciated.

Eventually, we reached home feeling exhausted. Mum had waited here all day for us and so kindly cleaned the house but had to leave before we got back, so thanks Mum for helping us out. You are a star. Gwen and Geoff came over and brought a fabulous chippy tea with them. It was good for Gwen to have a break out as she has been resting her foot today.

Eventually, everything calmed down and Phoebe settled having a cuddle. She has had her meds. this evening and is now in bed fast asleep.

It’s been fairly exhausting but we are all ok and just getting through things by the hour today. Tomorrow is another day and we are at home, we have some blessings!!!

Thanks for all your positivity folks it really keeps our spirits up xxx

For now peeps…rest easy until tomorrow xxx

'Everyone, no matter how humble he may be, has angels to watch over him. They are heavenly, pure and splendid, and yet they have been given us to keep us company on our way; they have been given the task of keeping careful watch over you.'

All our love,

Lynn, Ade, Phoebe and Spirit Eleanor xxx