Transplant Day +47 - The Recovery at home

Hi there Everyone,

Thanks for joining us once again and we hope this posting finds you all well.

Well….I’m sure you will all be glad to hear that following the final bout of sickness last night, Phoebe had quite a settled sleep. We happened to wake Phoebe up this morning as Ade and I were both up and showering as we needed to leave for the clinic around 9am, she was a little tired but happy.

We managed to squeeze a feed in before we left for Manchester along with the meds and I prayed to God that she wouldn’t be sick on the way to Manchester. Phoebe doesn’t like being sick at the best of times but especially not in the car. Thank you God, we were successful!! Like all baby bags, we always have a change of clothes which is necessary and all the other ‘not so necessary’ items that seem to creep into the bag, the number and weight of bags are increasing, we take less when we’re going on holiday…only joking!! It’s not too bad but we are cautious to take a little more than we need on our journey to Manchester just in case we need to stay in or find ourselves in traffic jams etc.

The trip was smooth with the backlog of traffic just petering out as we approached Junction 18/19 of the M6. Attending the weekly clinic is so much better and Phoebe is very relaxed at home, having the freedom to just walk around everywhere. It’s not a great deal for us to travel up each week. Even though our appointment is mid-morning, we are very lucky to live so close to Manchester really as some of the families have up to 10 hour round trips to make each week, coming from all over the UK. We are generally in clinic for at least a couple of hours as Phoebe’s medicines need to be checked by the Pharmacy and this takes a little time. Ade always comes back to the waiting area with a raffle ticket for his turn in the queue and complains that he’s never won a prize yet!! Ha ha!!

Shortly after arriving we were called in and it was good to see Sarah our BMT nurse and Rob who had some good results for us regarding the bloods. Phoebe’s platelets (cells to help against clotting) are fabulous and now in ‘normal range’ which is just amazing along with a steady increase in her neutrophils (cells to protect against infection).

Ade asked Rob a few questions today, firstly about Phoebe’s cells now being 100% Donor. Rob replied “100% donor” means that
ALL of Phoebe’s blood cells are now being made by the donor stem cells and not her own original stem cells. Consequently, this means that the DNA of Phoebe’s blood is now identical to that of the donor. However, all other aspects of Phoebe’s DNA e.g. the DNA of her hair remain the same as before the transplant and will do so for the rest of her life. He added that there is every chance that some of Phoebe’s original stem cells may come back into the picture but this did not concern him too much, so long as it was not within the first three months post BMT. If Phoebe’s original stem cells do return this can be easily managed to return the status to 100% donor. Rob also said that in extreme cases, this can lead to graft rejection although he can only recall this happening once in any of his patients in the last five years or so.

Ade also asked about the timeframe for reducing the amount of drugs Phoebe has to take. Firstly, Penicillin will be taken for the rest of Phoebe’s life. Rob then went on to mention the other four drugs along with Penicillin which he called the “Big five” (Aciclovir – anti-viral; Ciclosporin – immune suppressant; Septrin – guards against a certain type of pneumonia; Itraconazole – anti-fungal). These would be reviewed and possibly discontinued in three months or so if things continue to go well. Phoebe also takes medicines for anti-sickness, anti-stomach acid and an anti-GVHD steroid (Graft Verses Host Disease) which should be phased out in the next few weeks or so depending on how well Phoebe is. One final drug, MMF, another anti-GVHD was removed from the daily regime….hurrah!!! We also asked if there was anything available to help break down the excess mucus to which we received the swift but polite response of “No”…erm okay then!!!!

Ade has been a true star today, helping out another mum in the clinic called Nicola by finding some cream from one of the wards which acts as an anaesthetic for her son Luke, bless him. It’s great to catch up with the other families to see how their week has been too. Before Phoebe came into hospital, we attended a couple of playgroups and Phoebe generally played nicely around other children. Bless her, she really cried today when she was given a little mini egg by Ahmed’s mum and then Ahmed came along and thought ‘Yum, that looks tasty!!” and took it off Phoebe, well, the look on her face was a picture, she was so upset and came wobbling back, aah my little sweetheart, now Phoebe’s not too sure about this whole sharing business, so we’ll have to work on that one again!!!

Ahmed’s family are visiting here from Kuwait for treatment, it was nice to communicate with them through their interpreter, and the interpreter asked how old Phoebe was because she was talking so well. She also noted that Ade and I speak to Phoebe constantly, don’t really know how our girl gets a word in edge ways with Ade and me!! It’s always nice to hear people’s positive comments when they meet Phoebe, I’m like every proud parent I guess. We asked Phoebe this morning how her tummy was feeling and she said “better”!! Communicating with Phoebe is so much easier now as she is able to tell us what she wants, telling us when she feels a little sick or when she has “tummy ache” or “feels sore”.

Phoebe had a feed today before we left and managed to fall asleep whilst we were waiting. We met with Lynette our Nutritionist who was very helpful and suggested we increase the feed to 125mls for each feed, every four hours. Phoebe’s weight has reduced again since last week even though we were expecting her to have put on a little. Not too worry too much, this will all pass and Phoebe’s tummy will just need to take a little time for her tummy to heal.

We arrived home just after 3.30pm, Mum and Dad welcomed us all back to a fabulously clean house and a wonderful cuppa….I know…we are so blessed as I say so often to them. To have wonderful support from family and friends is so important for anyone experiencing tough times throughout life. These are our true riches and I say my prayers in thanks for all the help, love and support we receive each day. Thanks to all of you so much xxx

So….on the whole we have had a really good day, Phoebe has been phenomenal as usual teaching us so much each day and we look forward to tomorrow….our first baking day, Mum is here in the morning first thing so we will enjoy having a bit of time together, we’ll take some photos and let you know how we get on!!

For now peeps, we hope your week is going well and we look forward to updating with you all tomorrow.

Here’s to Margaret (Phoebe’s God-Mother) who is unable to see Phoebe at the moment and is having humongous withdrawal symptoms!!! Bless you!! See you in a few days. xx

‘Somewhere there’s an angel……just waiting in the wings for you.
Let your heart listen to the comfort, the wisdom, and the wondrous things your angel is hoping to bring you. Believe, and receive this blessing….and know that if you do, there will be times in your life when your serenity is sweeter, your understanding is greater and your joys are simply out of this world’

Douglas Pagels

Rest easy dear friends,

Much love,

Lynn, Ade, Phoebe and Spirit Eleanor xxxx