Share my story

Tuesday, April 27, 2010

Building up to the big one!

Mission complete, well almost!!! This is a novel in the making as this entry is so long but we want you to share with us that very special moment of starting the therapy and Jamie's progress during his first round of ch14.18 antibody.This is what your hard work has achieved for us.


There is so much to explain about what has happened during the past 5 days that none of this may be coherent or make that much sense!! I apologise!!!


I will try to start from the beginning, always a good option! Jamie was finally admitted for the 1st round of antibody treatment on Weds evening. We spent the afternoon in clinic getting labs done etc and also met up with a wonderful family who we met in our first week at the Ronald McDonald House. They were back in CHOP for an appointment and Jamie had so enjoyed playing with their children. It was so good to see them as they are genuine, kind people but unfortunately Jamie was in a really bad mood! After about 15 minutes he had become so tired and over excited that when I said "no" to a request [no time for the reasoning!] he kicked and scratched and screamed. People started looking but then I thought "hey, wait a minute, this child has had to put up with so much!"


So, Michelle and Justin, if you are reading this...I'm sorry that our rendezvous was cut short!!!


The room that Jamie had was fantastic, in fact the whole unit is amazing. How can I explain this...well we have moved to a totally different system of care and facilities. Not better - just different and it takes a bit of getting used to.  Jamie's nurses are also responsible for all his monitoring and administration of drugs and they provide round the clock care. They are never out of the room!! [That is no criticism by the way!!]


Once admitted and settled we had a tour of the unit. Wonderful facilities for the children which includes a well resourced and equipped play room with Jamie having his own Child Life Specialist who comes into his room each day to do activities with Jamie and even Poppy! They both did hand printing on his first morning!


The Ronald McDonald family lounge has all that you need to survive, coffee machines, large fridges and freezers and endless packets of Macaroni cheese to keep his Royal Highness Happy!!! Laundry facilities are an added bonus. Again, volunteers cook some evenings which leads on to the best bit...Room Service!! I kid you not... there is a booklet with everything there ranging from fajitas to hot dogs, burgers [I'll stay away from those, thank you very much!!] pasta, vegetables, stir fry, fries, breakfast things which you can order throughout the day!! You phone through when you want and it is delivered within 45 mins!! [Not free for mummy's though :(] On our first morning we ordered toast for Jamie and it wasn't enough and he kept saying "Can you phone it for me?!!"


Back to the first evening...Jamie had to be isolated because new admissions means that each child is swabbed to check for a particular virus. Until the results are through then your child remains in isolation. At least there are Play stations and computers in each room and enough space for Jamie to drive a fire truck in!! He was so excited to be here! A little bit of me was too but then the sick feeling kept taking over! He also loved his bed, one of those high tech paediatric beds with buttons and flashing lights so all in all very impressive until I saw or couldn't see, my bed! The brightly coloured sofa which I had thought considerate to mums and dads who want to chill if child is asleep, was actually 'The Bed!' I have to admit it was much more comfortable than I thought although I couldn't sleep on our first night here.


So Thurs morning dawned and I yawned...where had all the energy gone? I felt exhausted before this all began but Jamie was in good spirits until they began bringing in different medications to prep him. He eventually took what was needed and was so pleased with himself! It was from this point that the mutual admiration society was set up between Jamie and ANY Nurse that came in!! His Nurse for the day, Andrea, was fab. She adored Jamie, he adored her and so the story begins :)

No comments: