Cycle 3 of Antibody Treatment [ch14.18]
Wow! Cycle 3 is over and this blog might be quite short because there is nothing to say other than, Jamie coped so well, the best one yet...no pain, no cough...nothing!!!!!!!! In between his Benadryl sleeps he would be up and about playing. We still can't believe it!!! Only 2 more rounds to go! He just amazes us, seriously!
So here is a little review of our week!!
Admission on Wednesday went smoothly, no lengthy waits for a room and blood counts were good. Jamie was charming everyone as per usual, telling everyone that he loved them! All the staff laughed when he hugged me tightly and said "I love you so much mummy that I could gobble you up!!"
We spoke with the Psychologist about the workshop for Challenging Behaviour and it had to be postponed because only 2 families had come forward for it! We are hoping it will start next week.
Our room this time was a little on the small side and in a different wing of the unit, a bit isolated really but to cheer ourselves up we set about the familiar task of making the room our own. Each admission we do slightly different things and this time round Jamie really wanted 'Spiderman' included. We tried with our limited resources!
Here we are having just arrived in the room - we need a makeover!
The flowers were returned to us from the
'Wishing Garden from the ALSF event
Even his door gets a makeover!
Treatment started and we were so nervous but the only issue Jamie had on the first day was an increased heart rate. The Doctor was a little concerned but as Jamie was just an hour away from finishing the infusion, they just kept a watchful eye over him.
So that was it, the next 3 days were uneventful! Jamie got on with the job in hand and slept when he needed to, played when he needed to and eventually pooed when he needed to [days of being a bit stuck up there required his magic drops which loosen things very quickly!!]
The following set of photos show the remarkable Jamie playing whilst having antibodies going in!!!
Decorating himself with a dry wipe pen. Came off very easily!!
Jamie also wanted to make a Spiderman mask, so here he is with Brittany, his Child Life Specialist. She is so lovely and is so good with Jamie and Poppy...
Just chillin!
The next few weeks are very hectic with hospital appointments with the dreaded disease re evaluation. This means that Jamie is at the mid point and will have all the scans done again to see if the cancer has come back. This will never get any easier and each time it is an anxious wait for results.
On Saturday we are attending a Childhood Cancer Symposium in Philadelphia which has been organised by Alex's Lemonade Stand. Lots of different sessions about dealing with cancer, survivorship and issues with this, nutrition and new treatments and trials.
Granny Inglis flies out from Scotland today. It's been a tough year for her too with other family events - not just Jamie's illness, so it will be lovely for her to see Jamie and Poppy and enjoy the hot weather!
2 weeks ago, Maj Lacey, based at the Naval Station in Willow Grove, helped us in acquiring a mattress for the spare bedroom and some small pieces of furniture to finish furnishing the guest room. The Mess had a collection for us and also presented us with 2 gift cards to be used in the grocery stores! It was very unexpected and very kind...thank you!
Poppy is doing well, crawling and moving in every fashion possible but we just don't understand this crawling forwards business and so she gets herself stuck in the most awkward places! One of the children in the RM House who also has NB really likes Poppy's name and has called her the 'flower baby!' This has reminded me of our friend's daughter [the family we went to the theme park with] who on that day said to me "Miss Vicky [sooooo polite!] Poppy's eyes are like blueberries!" Beautiful!!
Here is our flower baby with eyes like blueberries
Goodnight!
XXXX
