Round 2 has started!

So day of admittance. It's always a waiting game for our room but yesterday was ridiculous. Our appointment in the onco clinic was at 2.00pm and we had to wait 8 hours for our room to be ready. 10.00pm last night we trudged into our room with the staff apologising over and over again. I wasn't cross with them, it is not their problem, the poor nurse from onco can't even go home until all her outpatients have been admitted so it was a long day for her too. To be homeless and entertaining 2 young children and trying to feed them etc...=STRESS! On the flip side, Jamie and Poppy were brilliant!


When we arrived yesterday to clinic, the NB nurse practitioner was being filmed for a documentary on how Alex's Lemonade Stand Charity have funded for Neuroblastoma practioners and what their role is [bloody brilliant role at that!!] and guess who they wanted to film...Jamie!!! Always the star bless him!! Honestly this charity are amazing. The Alex Scott Day hospital here for oncology has been funded by them. Please visit their website (http://www.alexslemonade.org/). I think there is an open day coming up soon which we are looking forward to.

Clinic went as usual, labs drawn, dressings changed, lines flushed and chatting with the team about Jamie's progress. Accutane...now there's a word, I guess each parent dealing with childhood cancer will have the same issues so even just on hearing the name of the drug my blood pressure starts to rise! If you have been following the blog and/or reading fb updates you will be aware that this week has been..AWFUL... for Jamie's behaviour.. I spoke with the team and they say that they hear this all too commonly when children are on this!! Wonderful, we will have a child with a split personality every 2 weeks for the next 6 months and this is more than just developmental!! This all sounds very down but I think we are all just worn out with these complete meltdowns! They have said that during the 2 week break from the drug, children's behaviour usually improves!!! Jamie is on his last dose for this cycle and has a break of 14 days

Linked to that, our NB nurse practitioner informed us of a new programme running at the end of May for pre-schoolers and parents dealing with cancer and its effects, in particular, challenging behaviours! Guess which family she thought of...us!! I think it's a 6 week course. When we saw the info for the parent group: "Gain confidence in managing challenging behaviours, including tantrums and not following directions" I wanted to re-phrase it like this

Gain a better understanding of schizophrenic obsessive compulsive disorder at 4 years old! I have coined a new term as I think this best explains what Jamie is going through [and the silently rocking parents in the background]!

Ok this is my dry sense of humour coming out and no disrespect is intended so please do not be offended by my use of these disorders in this context... I know that each of these is nothing to joke about.

Moving on... Jamie continues to eat little and often. Yesterday was Mac and Cheese with fresh spinach. Today, he doesn't want that, just the Mac and Cheese. I am meeting with the Nutrionalist again today to discuss other options such as high calorie powders that can be added to Jamie's milkshakes. They are also going to give him a high calorie tray with lots of tasters on. He is looking forward to this and we can find out what he would like. His tastes change daily though!

The IL2 is now going in as we speak and Jamie is having a sleep. The IL2 finishes on Monday and we have been told that these 4 days should be non eventful. After the 2 day break we have the antibody 14.18 combined with IL2 for 4 days. This is the hardest combination for side effects and pain.

Jamie's godfather, Tom, is coming out at the end of May for a long weekend. He will be our first visitor and Jamie is very excited. It works out well as Jamie will be in between treatment. We look forward to seeing you Tom!

Another Tom whom we need to mention is that of a fire officer here in Philli. His photo is included in our album. He heard of our situation and wanted to help, driving up with a friend one weekend to deliver a rug and a sofa. Jamie enjoyed trying on the fireman's hat and playing with the fire truck that they gave him. A few weeks later we had a call from him and he had a piece of furniture for the bedroom, a lamp, a huge TV, large coffee machine and a coffee table!! Thank you so much to Tom, the fireman!

Jamie has also made some new friends in the local pizza place! They make Carbonara especially for him [it's not on their menu] and he gets a free ice cream!!

It has been good to catch up with the other British families - we are all in at the same time although at different stages. Robyn Higgins is starting her FINAL round and Stella Rogers is on her 4th [I think]. Good luck to all 3 of you wonderful children as you continue your fight against Neuroblastoma.

Once again, thank you for reading this blog, Jamie knows that people are reading about him and has often said "Will you put that on the puter?" [refuses to say computer!]

Love to everyone that knows us!! We are missing you all and have felt a little homesick these past few days!

Soon I will post a link which is an interview with Jamie's oncologist, Dr. Maris. It gives you an insight as to what the immunotherapy antibody treatment is all about. Please take a look!