Transplant Day +34 - With a little help, we're back on track!

Good Evening to all you beautiful Bloggers!!!

Welcome to Day +34, isn’t is remarkable how quickly the time has passed? We hope you are all well out there!!

The morning started incredibly early at 4am as for some reason Phoebe was really unsettled, sitting up in bed. After a little chat explaining that it was still sleep time and a cuddle I managed to settle her down again….for about 5 mins..before she popped up again…oh how tired did I feel?!! It's nice to be able to lift Phoebs out of the cot and cuddle with her on my bed instead of being linked to machines. She snoozed for a little while before I resigned myself to the fact that I wouldn’t get back to sleep. Couldn’t particularly put my finger on exactly what was upsetting Phoebe, just put it down to her feeling a little more energy from the transfusion and awake just wanting a mummy cuddle…it was very tiring but lovely at the same time…aah.

Phoebe did well with breakfast this morning and chose some porridge; she ate a good portion but it wasn’t long after that both Phoebe and I were flagging a little so Ade took over for a while and we both had a huge snooze for a couple of hours.

Phoebe’s weight has remained the same today but the rash has become much more obvious. Rob came by to check this and confirmed this was a GVHD (Graft Verses Host Disease) rash; this is when the donated cells see the skin as alien rather than familiar and they react to this. It's extremely common and we hope it will stay as mild as it is at the moment. Rob decided to start Phoebe on steroids and ironically one of the side effects in an increase in appetite which works great for Phoebs. The steroids are initially given intravenously and this will eventually change to oral medicine before the doses are gradually reduced. Overall, Rob is very pleased with Phoebs and very confident that everything we are currently experiencing is completely normal following a bone marrow transplant. We couldn’t wish for any better in this situation than normality, to hear those words is such a comfort.

Throughout the day, Phoebe tolerated her feeds following her heavy bout of sickness last night; the feeds have been given every 3 hours again but we have reduced the amount to 55mls per feed. We will see how things go through the night and look to increase this from tomorrow.

The troops arrived around 12.45pm and they do so well driving back and forth each day. It was lovely to see them all and Phoebe was so pleased when she saw who came to visit. We spend time talking about things which are going to happen throughout the day. Phoebe sat with Mum but didn’t really have the appetite for the lunch that I’d ordered for her but she merrily tucked into Mum’s crisp breads and cottage cheese which was fabulous. You could tell she really enjoyed it so we will buy some full fat cottage cheese and see how she goes with that. Mum very kindly made some bread pudding for us which is just the best; it doesn’t help my diet but when Mum makes it you just gotta have some! Gwen and Mum were busy entertaining Phoebs…or was this the other way around?!

Dad and I took the opportunity to go for a walk and it was great to breathe the lovely fresh air, although there was a real chill on my legs of all places! In earlier postings on the blog I have talked about noticing all the blessings we receive each day and walking with Dad is something I really enjoy; just being able to have a chat about things is great quality time together. Dad and I returned feeling refreshed just in time for a cuppa before the guys headed off early to avoid the rush hour traffic.

Phoebe became quite tired this afternoon after all the walking up and down in the room (in my shoes for a while! - left) and she swiftly fell asleep on my knee as we watched an old black and white film together. When Phoebe is settled it’s a good time to catch up on her medicines, one of which requires dissolving in water before drawing it into a syringe. This has a tendency to block the line and unfortunately this happened today. We are learning all the tricks for unblocking the line like trying Coca Cola or pineapple juice down the tube as the acidity dissolves anything left but to no avail! After some time spent pulling back on the syringe and even inserting the guidelines to help clear the blockage, we finally decided to take the tube out and insert a new one. It’s tough for Phoebe to keep going through the very unpleasant procedure but better for her in the long run and we are pleased that she won’t remember any of these times. After the line is inserted, we have plenty of cuddles and Phoebe tends to calm quite quickly, the little soul xx

Dinner was served before Phoebe awoke and instead of chicken and happy faces she just fancied another bowl of porridge and really enjoyed it. Phoebe’s appetite has improved today [Probably due to the steroids - Ade] along with her energy levels. We hope that this continues to enable us to return home soon, although it is too early to speculate. Our priority is to ensure Phoebe is continuously gaining weight and that she is well before we head for home. Tomorrow is another day and Phoebe amazes us how she keeps going, in fact she keeps us going!!

Well folks, it’s getting late; heading for Bedfordshire to make sure I get some shut eye in case Phoebe awakes later.

For now dear friends, thanks for joining us and we’ll catch up with you all tomorrow.

‘It’s not your imagination. Sometimes a “coincidence” comes with a lot of angelic effort.’

Wishing you all a restful sleep.

With love,

Lynn, Ade, Phoebe and Spirit Eleanor xxx