Share my story

Saturday, August 14, 2010


Jamie was so excited to be back in CHOP! On hearing that Jamie is 'in the house' he normallly has a steady stream of visitors [nurses] coming through the door! One of his particular favourite nurses dropped by for a chat and Jamie was screaming and punching the air going "woop, woop!" He then proceeded to demonstrate his 'chipmunk' dance to her whereby his random high energy 'moves' are accompanied with ninja type noises!! This then results in his shorts and nappy falling down much to Jamie's amusement! His laugh was so loud, as were mine and the nurses, that people stopped by to see what was happening!!! Jamie certainly knows how to make an entrance as he had only been there for an hour!!!

The nurse that I am talking about adores Jamie and has often said how she admires what we have done with Jamie. Those of you that know me well, know that my counter argument to that is that any parent finding themselves in this horrific nightmare would do the same thing.  On this night she said that she thinks I should write a book on how 'best' to cope with cancer in young children. It has been said by others before, even in the early days of diagnosis. Who knows, perhaps this would be the best form of therapy as I'm going to need something to channel my thoughts into! When this blog ends, therapy ends and I don't think I am anywhere nearing completion on that side.

Jamie has completed 2 days out of 4 of the ch14.18 antibody. Yesterday he was completely wiped out and slept for the majority of the day. When he was awake, his eyes looked scary due to the morphine! I have some video footage that I would love to put on here but I just don't know how! I have a Sony DVD Camcorder so if anyone can offer some hints for me, you may then get to see some footage of Jamie in hospital!

As we are well aware, this protocal is being used to inform future treatment and even in the time that we have been here there have been little tweeks to the treatment. One of them which I think has really helped Jamie this time is the additional antihistamine alongside his others. The Drs were seeing children who have severe side effects such as the coughing and swelling of the lips but with the combination of these antihistamines, this was greatly reduced and helped the children.

So far, Jamie has had no cough and respiratory come down at least 3 times a day to check him [due to past history with lungs and breathing difficulties] and everything is good! He has taken these extra medications by mouth with little protest and has quite rightly said today "I am proud of myself!"

Today started off with the usual anger with the injection but then the Drs came in and messed around with him which cheered him up! I was fully expecting Jamie to be sleepy and lethargic but NO!!! He was out of bed and playing cars with me all morning, trying to get them out into the corridor. After spending most of the morning going backwards and forwards retrieving escaped cars,I was almost begging them to give him his Benadryl!!!! It's funny how the body reacts differently each day.

As the day progressed, Jamie became more anxious and frustrated. He was anxious about the changeover of who was staying with him tonight. John and I usually take it in turns but Jamie wanted me to stay again. He said "I'll probably love Daddy tomorrow!!"

After a little sleep he awoke with a puffy face anad a bit of swelling around the lips. This always scares him so I reassured him that it wasn't too bad. I didn't have a small mirror to show him so quickly took a photo of him so that he could see what he looked like. He was happy with this!

Jamie developed lower back pain and pain in his mouth so needed to hit the morphine button a few times. His skin became quite itchy and very dry. It is peeling off his head but this could be due to the morphine. He was given an extra medication to help with the itching and has had a settled evening.

Day 3 tomorrow which may see a worsening of the above mentioned but so far, oxygen stauration is good and blood pressure is good. We are heading in the right direction for once!!!

Don't forget to play Jamie's song on Monday  and Tuesday - Greatest Day by Take That!!

Thanks for reading and goodnight, sweet dreams my little Jamie :)


1 comment:

Jannene Crawford said...

Fantastic News. I've been following Jamie's progress over the months and so has Neve (you used to be her teacher at St Georges) and we're both over the moon that things are on the right track for you all. Well done to you all.