A wonderful lazy day!!

Good Evening Everyone,

Hope everyone is having a good weekend so far. It’s been probably one of the laziest days in record here at Casa Oldfield.

Last night, late on, I decided to sleep on the floor next to Phoebe as she was looking a little pale, temperature was fine but as she had received a dose of chemo I thought maybe should stay by her bed for a while, we did have to get up a few times in the night but I may be re-thinking that plan for tonight...need my own bed!

Phoebe is doing well although she has not really wanted to walk very much as she has lost a little muscle on her calves, her legs are still a little weak but she won’t build them up if we carry her all the time coupled with the fact that she is getting heavier everyday from eating so much. Phoebe is slowly re-building her confidence, although she doesn’t really want to walk I have persuaded her about walking to the toilet and she managed to climb four stairs under incredible duress mind!!...but she did it bless her.

Sam, you were asking about the medication and how we remember it all, we previously devised a chart which lists the medicine, strength, dosages and time, we then mark in the time slot when given. All through the past couple of weeks Phoebe has done incredible well taking her medicines and we hope this will continue in the Bone Marrow Unit instead of using a nasograstric tube. Some of you may remember the trips taken to the hospital when Phoebe was sick or if it had come out. Should this happen in the future I will suggest doing this as I was pleased to be able to sort this for Phoebe last time rather than making a trip to the hosp almost every day. I will just need confirmation and clearance from the nursing team which should be no problem.

Sarah, Grant and Charlotte came to visit and Phoebe enjoyed some painting time with Charlotte, it was great to see you all. Along with our troops, my cousin Margaret and Frank came also to ask my thoughts on Phoebe’s birthday present which will be great for her going into hospital. What do you get a child that pretty much has everything....lots and lots of hugs!!! Gwen came over and very kindly brought a steak roast dinner she had prepared for us...it was for dinner but only lasted as far as lunch...seems like a long time since I sat and had a descent roast dinner, think my body was craving the vegetables too..truly delicious!

Andrea and Molly popped by this afternoon and it was great to catch up, I pulled a favour in and asked Andrea for a hand massage and then before you knew it the girls were asking for foot and back massages...give ‘em an inch!!

As Phoebe continues on Dexamethasone which is her steroid, she continues to eat by the truck load and it’s so hard to try to persuade her that she has only just eaten and her tummy needs time to digest it! Tonight she enjoyed some pasta with garlic bread and it was great to sit and chat at the kitchen table, she said it was lovely to be at home and sitting having dinner altogether...bless her!! After dinner, she wanted to retire waddling to the couch, we turned on Madagascar but she gets so upset with this film and predominantly tells me ‘Mummy, I’m just too young for this!!!’ Phoebe is guiding me much more these days, now that she has found this assertiveness...but to be fair it does make it much easier as she can explain how she is feeling etc as well as explaining her food orders or should I say demanding!!...hence to say one of our focuses at the moment is good manners. Normally she is very good and polite when asking for things but we at the moment we are reminding her a little more than normal...oh those steroids!...but of course I can live with them as they are keeping our girl well. It will be nice to see Mum again tomorrow as she has been on a pilgrimage to Oberammergau in Germany and by all accounts it’s been an incredible trip.

Hi Lissa, thanks for your question..we are looking to re-transplant again on 26th August and will be admitted nine days before for intense chemotherapy and immunosuppressant therapy. Even though we have been allowed home, we need to visit each week for a four hour dose of chemotherapy each Friday. Rob has decided to leave the weekly lumbar punctures as we have seen a good result in the drop in protein and white cell count is virtually nil.

So folks, going to take the opportunity to have an early night...but for now...

Many thanks again for all your lovely messages and we look forward to catching you all again tomorrow.

Rest easy dear friends
Much Love
Lynn, Ade, Phoebe and Spirit Eleanor