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Wednesday, August 4, 2010

Mission Complete...nearly!!!

Firstly, I need to correct a statement from the previous entry where I talked about the treatment being offered in Germany. A very well sourced friend in the same situation as us kindly brought it to my attention that the treatment in Germany is NOT the same as here in the USA. Currently the German trial is without GMCSF and with lower doses of IL2. The trouble with our NB world is that things are happening all the time. I guess you always want to hear the best news so I think I had convinced myself that this was beginning in Germany now. It is beginning but can not be compared to the study here in the States.

This entry is going to be jam packed as we near the end of our stay here :(   but   :)!

So the end of cycle 4 could not come soon enough for Jamie and for us. We could not relax at all whilst the infusion was running but somebody out there is looking after us as Jamie made it through! The staff really are brilliant and know what to look out for. They even let us read through their training protocol for the treatment that Jamie is having. Funny that as I was reading through and it was highlighting possible side effects and what to look out for, I was thinking "yes, we've had that, seen that and can mentally monitor and evaluate Jamie's effects!"

On the day of discharge we had so much waiting around. I had checked out of the RMHouse and arrived at the hospital by midday, hoping for a quick getaway back to Warminster,PA. O'h how wrong was I to be!! Jamie's blood levels and other counts were giving some concern so blood was ordered ready for another transfusion. This arrived about 2 hours later and was to take 3 - 4 hours to administer. After which, more blood was then tested for electrolytes and creatnin. We waited ages for these results and finally left the hospital at 7.45pm!!

Jamie was so tired and fed up after this round of treatment. The photo below sums it all up!

Relief that this one was over but exhausted from the strain

Jamie spent the next few days recovering although he had to go back to CHOP 2 days later for clinic. A few of the levels were a bit low but everything was good to start the Accutane!! Great!! The break from this medication seems to be over so quickly each time but I have to say, it is no way near as bad as the initial cycle! Jamie is happy for us to squirt the liquid out and for him to take it on a spoon. This is so much easier and quicker!! We are not supposed to do it this way but lots of people do! Interesting that today we saw a piece on TV about Accutane being linked to IBS! Jamie has no end of problems with his bowel so was rather alarmed by this. However, as fellow parents in this onco world know, you treat one thing and then this causes something else which needs treating, this then causes another side effect and so the cycle continues. The drug companies must be laughing at us because they know that chemotherapy and other meds needed create further problems with more drugs needed. This is really cynical of me and it's only now that as Jamie is nearing the end of treatment I have come to appreciate that it is not the end. Jamie will probably have effects from this for the rest of his life. We are in the process of getting a road map done of all the follow up and tests that are going to be needed as he grows up. For example, jokes aside, I know that John and I are not exactly the tallest of people but Jamie has not grown at all in the last 12 months. We are now talking about growth hormone injections but there are probably side effects from this too!! The issues of survivorship have been locked away as to be honest, we were a bit scared to talk about surviving, especially during the early months post diagnosis.

Jamie has put up such a huge fight with Neuroblastoma that he will face other obstacles from this in the same way. Just not sure whether we have any reserve left to do so!!!!

What treatment do we have left for Jamie?

1 more round of ch14.18 [antibody] therapy
GMCSF injections [I have to do these, yuk! Piercing your own child's skin is something I will never get used to!]
Oral meds ~ Accutane which will finish mid September
Bactrim [not sure for how much longer]

We will come back to Philadelphia at the end of September for the final scans!
Disease re-evaluation [MIBG scan, CT scan and bone marrow aspirates]

This means, having confirmed with CHOP this week, we will all be flying back to Germany middle of August!!!! We also found out today that an MOD organisation donated €10,000 to Jamie's appeal!!! It is so easy for people to think that we should stop fundraising as Jamie has almost had the treatment. I wish this could be the case but Neuroblastoma is unpredictable and aggressive. There is no way of telling whether the antibody therapy has been a success. Time is the only way that we can tell. The longer Jamie stays disease free, the better the outcome. IF this thing ever came back, we would be on that plane,  back to CHOP within hours. That's why we are so grateful for this huge boost to Jamie's Appeal. I haven't named the organisation as they may want to remain anonymous! We have also said that should there come a time when the funds are no longer needed, then other NB families will benefit.

So, our lives never stand still and in amongst all of this, we have found out that the Army are posting John back to the UK. We have lived in Germany for 7 1/2  years and both children were born in Viersen Krankenhaus so it will be very poignant to be leaving this country.

The best bit??? We are moving back to York!!! We can't believe that we are moving back to the city we left in 2003 and that this city have been at the heart of all our fundraising in the UK!! The people of York are still following Jamie's progress and we have tried where possible to stay in tough with the local radio station, Minster FM. We could be back in York by the end of October. Having lived away from the UK for this length of time, we are excited about moving back. We already have a date with Mr. Asda and Betty's - Yorkshires finest tea room! Get the kettle on Betty, we're coming for a brew!!!

As with all Army wives, I will be giving up my job and having to start all over again but for the time being, my priority is Jamie. He won't be able to start school until after Christmas so I can't look fo anything full time until Jamie is ready!

We are now trying to cram in as much as we can before we leave. It's our 11th wedding anniversary tomorrow and so we are all going away for the weekend to Lancaster - Amish Country. Well that's if Jamie is ok [Jamie and John have had to do an emergency visit to CHOP tonight as Jamie has an ear infection. Who knows what time they will be back!]

We have heard that this part of Pensylvania is beautiful. We are hoping for Jamie to get a ride on a horse and cart!!

There seem to have been a lot of first's to celebrate over the past week. Poppy's 1st haircut and 1st Birthday and Jamie's 1st visit to a pottery studio.

The following pics are of Poppy at the hairdressers!

The end product!!!

We had a wonderful celebration for Poppy's 1st birthday but it was a shame that we weren't with any of our families. My parents Skyped on the morning so that they could see the birthday girl!! I have never had so much fun preparing for a birthday. It could be something to do with the fact that I am still a little girl at heart!!!! Anyway, Jamie helped with the mixing of the cake and I was so proud of how Poppy's birthday cake turned out! I truly do not bake, I like to be creative but I usually get the cake part bit wrong. Thankfully it all worked out and tasted delicious [lemon cake and lemon icing].

Someone thought it was a teapot but as you can see it's a handbag and a purse!!

Both Poppy and Jamie had a lot of fun. This year has gone by so quickly but Poppy really is the most gorgeous, happy little girl and we all love her!! Saskia, you were so great coming round when I went into labour although I think you thought I wasn't going to make it to the hospital!!! Whilst you were trying to sleep, John kept calling you to keep you updated!!!!

Our beautiful 1 year old! She will hate me for this when she is older!!! 

She truly adores dolls, so she was easy to buy for! I think she liked it!!

We took the children to Sesame Place for Poppy's birthday, here she is enjoying her lunch. It was so hot, 104 degrees F, and there was no shade so after queing for 2 rides we called it a day. We had only been there for just over an hour!! We got in free with our mil ID so we didn't feel so bad about leaving early!

Cooling down and getting ready for the birthday cake!!!

Big brother to the rescue!


Where's my cake???

Now you see it...

     ...Now you don't!!!! She loved it!!!

Yay, full of additives and energy!!!!

Our friends from the Travis Manion Foundation [Tina and Geoff] invited us over again to their house so that the men could shoot and the ladies made jewellery! We had a lovely time with them [as usual!!] and they also had a cake to celebrate Poppy's birthday alongside gifts for both Jamie and Poppy. Tina has done so much for us and has helped us form some wonderful memories of Pensylvania!
Happy Birthday Poppy!!

Tina also had another surprise for us for the following week. She had organised for us to go to a ceramic studio where the children could make their own tiles. The Travis Manion Foundation have been involved with Katia Tile Company as they together, with their local community, built a memorial called 'Freedom Square.' This is primarily in honour of Janet's son,Travis but is a place where all cann reflect on fallen heroes. Lots of children have been involved in creating a star for the memorial and John and I made one too at the workshop with the statement "There is always HOPE." We also had the pleasure of meeting Janet, whose family have set the Foundation up and have helped us enormously. We know that so many people have helped us throughout Jamie's appeal and sadly we know that we won't meet everybody so it's always nice when we do get the chance!!!!

Poppy did her own hand and foot print and Jamie did a hand print. Here are the photo's and we should be bringing the tiles home with us!!!

Here is Tina, holding Poppy!

Poppy's turn!

Jamie's handprints!

Learning a few tricks with clay and water!!

A few more tricks as influenced by Daddy!!

After our fun in the workshop [another real life experience for Jamie!!] we went to Freedom Square and saw all of their work!!

This seems to be an entry of pictures but sometimes that is all that's needed, especially when you see Jamie's infamous smile. We have another week or so until we are back in CHOP for the pre admission checks, ready for the final round!!!!!!!!

I will update before we go in for treatment as no doubt there will be much to share with you all!!

A Special Message for my mum in Oxfordshire....

On 7th August my mum will be celebrating her 60th Birthday!! We hope she has a wonderful day and we will have some extra celebrations when we next see you! HAPPY BIRTHDAY!!!

Another birthday coming up is Jamie's!!! Jamie will be 5 on the 17th August, the day after he completes his inpatient stay!!!!!!!! He is so excited!!!! He wants a Spiderman cake which is really testing my creativity!!!! Wish me luck!!

Bye for now and thank you as always for reading!!!