Transplant Day +61 - Recovery at Home and another successful outpatient appointment..we're making real progress!!!

Hi there Fellow Bloggers,

A warm welcome this evening after a truly beautiful sunny day!! It has been a very positive day following our trip to Manchester for the weekly clinic.

Phoebe awoke this morning quite hungry and asked for a bowl of porridge, she was so eager to eat it as I was preparing it, she couldn’t get it down her quick enough and it was great to see her hungry, its also really pleasing to see that she is still interested in eating normally since being on the NG feeds.

We arrived in Manchester after a smooth journey making good time, and were surprised to be welcomed by Maged today who was covering for Rob as he is abroad at the moment for a meeting in the US. It was great to catch up with Maged as it’s been a while since we have seen him since our discharge from the unit. He gives a phenomenal level of care to us as a family and is very warm, friendly and has a little more holistic approach to treatment, keeping the on-going care as natural and non-evasive as possible.

Whilst Ade was talking with Maged, Sarah and I were busy preparing Phoebe to be weighed and having her bloods taken to check all the different levels, this enables us to increase or reduce the doses of medicines as necessary. Phoebe’s weight had very surprisingly stayed the same since last week even though we had been careful to make sure Phoebe has had the advised 900mls per day. Sometimes it is a little difficult with the full regime of medicines throughout the day, making sure we leave a little time for her tummy to settle before we pile another dose in, bless her she does do so well with it all. Phoebe happily entertained Sarah with all her counting and singing, well, let’s just say she was much happier when we had finished changing her dressings which is not her most favourable part of the appointment. Phoebe gets upset when we are peeling the dressings off so now I start to peel them for her and Phoebe finishes them herself, it seems easier for her as she knows her own level of pain and can just take them off easier herself plus she gets to be involved a little which is important. Today, Phoebe held her Hickman lines for Sarah whilst she gave them a little drink and we always remind Phoebe that we are doing it to make her blood better and she is fine with that!!

Lynette our dietician joined us for the appointment and even though Phoebe hasn’t gained any particular weight she is happy for us to continue with the plan for another week and we will review the feeds again next week. Lynette helped to reassure us that all the issues regarding Phoebe’s appetite are completely normal especially for her age following a Bone Marrow Transplant.

So as I mentioned earlier, Ade had a good chat with Maged particularly about the medicines and we have a few changes where we will now reduce the steroid Prednisolone which treats the GVHD, Phoebe has had no further signs of this condition and continues to be on a reducing regime. Maged is over the moon with the bloods results and everything is as it should be which is such fantastic news.

Luckily we were able to leave for home once our appointment was complete as we didn’t need to wait for any meds having enough to last us until next week. Sarah usually calls with the blood results later in the day to update us on whether we need to reduce or increase any particular doses.

Ade and I planned to take a couple of pics for you all whilst in the clinic but thought we had left the camera at home, unfortunately Ade had what us girls term a ‘boys look’ in the medicine bag and couldn’t see it. Whilst I was waiting in the car ready to leave I found it in the meds bag and took this photo, Phoebe is happy to be on the way home!! We will take some photos in clinic next week for you.

The journey home wasn’t as smooth as our earlier trip to Manchester, due to accidents on the M6, its awful to hear the sirens of the ambulances and then to see it speeding past rushing to the scene. Whenever I hear sirens, see any accidents or stranded motorists, I always ask my angels to help out anyway they can and I absolutely trust they will!! The traffic was backed up a little but soon cleared and it was nice to be heading towards Nan’s a little earlier especially whilst the sun was still shining. I took the opportunity to pop Phoebe in the pushchair and head out to give her some fresh air whilst we waited for Gwen and Nan to arrive back. Surprisingly as most of you will understand….Ade came with me for the walk, you know he’s not a great fan but he really enjoyed it. We walked around the Westlands and noticed so much more, the houses and gardens are really beautiful; there were so many private driveways we never noticed before.…you could just tell they lead to magnificent properties subtly hidden away.

Aaah, a nice cup of tea was waiting for us when we arrived at Nan’s and it was great to see them full of smiles for us. Here is another picture of Phoebe playing shop standing behind Nan’s table in her sitting room, this keeps Phoebe good for ages, hey, just a thought if anyone has any of the plastic toy foods or a toy cash register you would like to recycle, please give us a call!!









A special mention tonight for all the peeps at the Steelworks Dance Studio in Fenton. My dear friend Andrea keeps everyone up to date on Phoebe’s progress and I know some of you visit us here on the blog, thanks for keeping us in your thoughts, it will be nice to pop down one evening and catch up with you all…hope you are all well and ready for the next show!!!

Well bloggers…we’ll say au revoir for now and please join us on Friday this week for another update on Phoebe’s progress. If any bloggers wish to contact us before then, please feel free to pop an e-mail over to
me at lynn@oldfields.net

For now….take care everyone and rest easy!

For my beautiful girls Spirit Eleanor and Phoebe, from your Mum so proud to call you my daughters…

‘Angels rejoice, worship, and love. They probably whoop and holler,
as well. We can only imagine, for now, the excitement in their hometown.’

Much love
Lynn, Ade, Phoebe and Spirit Eleanor xxxx