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Tuesday, August 24, 2010

The last few days!

The weather has suddenly changed, we're about 20 degrees cooler and loads of rain! Pensylvania are obviously preparing us for our return to Europe!! I apologise if some of the anecdotes in this entry have appeared on my facebook page but there are lots of people who will be reading this for the first time!

We have been so busy getting the house organised, cleaned, clothes packed, unpacked and repacked!!! It seems very surreal that we are coming to the end of our time here! Last week was busy with Jamie's birthday, saying goodbye to everyone in the Ronald McDonald House and also saying an emotional goodbye to Children's Hospital Of Philadelphia. We had 2 extra visits there last week, one for clinic where we found about Jamie's thyroid not working. This is because of his MIBG therapy that he received in December so this can be easily managed by HRT. It was still a bit of a shock to here that Jamie is now beginning to show side effects - this one is a long term one and he will be on HRT for the rest of his life.

On returning back to our house in Bucks County we noticed a lump on Jamie's abdomen. It is something that I noticed 2 months ago [very small and difficult to see] so the Drs tried looking at it but weren't too concerned. Since then Jamie has had the all clear with scans etc but last week, the lump looked bigger.

I think this was a test and reality taking a check on us in that, you think you have finished with this?? It is not over yet. O'h yes, we thought we were in trouble again [paranoia after having stopped treatment]. We phoned the hospital with our concerns and took Jamie in. THANKFULLY it is 'only' a hernia at the sight of surgery last year. Pheww!!

Our last weekend in Philadelphia was a bit more relaxing. On Saturday we all sat together [in a busy household this does not happen often!] and had a leisurely breakfast. Jamie had been given a present from 3 girls across the street, one of these poster art things and he spent ages doing some wonderful colouring at the table until he saw an ant on his work! We have had a problem with ants which was under control but now they are back. Jamie threw his pen down and said "I've had enough of these freakin ants!!!" He is becoming slightly Americansied so time to leave we think!!!!

On Sunday we spent a lovely evening with Henry and Barb who cooked a wonderful meal. Having lived with them for a month at the beginning of our time here, it was great to go back and see where we started out. Very sad to say "Goodbye" and seeing the city of Philadelphia at night on our drive back was sad too.

Jamie completed his last cycle of injections on Sunday!! Here he is being so brave!

He is still taking Accutane but he has no issue taking this anymore!! Jamie is very well in himself, eating loads, more energy, very happy and dare I say that I am beginning to see my old Jamie back?

Our Dr in CHOP has given a very good summary of Jamie's treatment and detailed follow up requirements. We return to Philadelphia at the beginning of October for disease re-evaluation scans, assessment etc... This will be classed as time point 0 and from then on, Jamie will have scans every 3 months for a year. These will be done in our local hospital!!!

I have decide to keep the blog entry on advice from friends and also because we still have those scans in CHOP in October to share with you! Start crossing everything now please!!!

Thank you everyone for all your birthday wishes for Jamie, including Celia in York! This lady shaved her head back in Feb/March for Jamie's appeal and sent Jamie a wonderful card with some dollars for him! Celia, we spent over an hour in Toy's R Us with Jamie trying to decide what he wanted!! He ended up choosing a Garbage truck from Toy Story 3! Thank you so much for your kindness! Maybe we can meet for a cuppa when we move to York? It would be lovely for Jamie to meet you.

The following pictures were taken on Jamie's birthday! After the intial horror on learning that Jamie wanted me to make a Spiderman cake, I don't think it turned out too badly! He also had a Spiderman cake from the Ronald McDonald House, so if it had gone wrong, I could have used that one!!!! The photo of Jamie with the girls shows all 3 children who have struggled with Neuroblastoma.

Jamie enjoying his visit to the Aquarium!

Jamie realising that his birthday cake is Spiderman!!!

Jamie's present from the RMHouse

Jamie's 2nd cake - this one was from the RMHouse and shared out to everyone!

Enjoying a game of hide and seek - lets hope that Neuroblastoma does not find Jamie again...

Bye for now!!



Anonymous said...

Lovely lovely photos xxx

Anonymous said...

Very happy to see it !

Do you know where ( hopspital ?) in Europe we can have the treatment with antibody CH14.18 for the relapse case ?

my email is
my mobile +32 498585181
I'm living in Belgium