Keep Jamie Smiling

2010-08-24T19:47:00.000+02:00

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!!

Vicky

2010-08-20T05:22:00.003+02:00

The Completion of the Final Round of Antibodies

In amongst the euphoria that followed after Jamie finished his antibody infusion, I wanted to take time out and reflect on what Jamie has dealt with over the past year and a half. On re-reading it back I can't quite believe that this has been ours and Jamie's life. This is by no means written for sympathy...it is just fact and reality, laid down for all to see, including me as Jamie's mummy. The next time I get frustrated with him for whatever reason, I just need to remember exactly what his little body has had to endure.

The Story so Far...

Unbelievable, heightened anxiety, extreme happiness, extreme lows, sheer and utter relief...these are just some of the emotions and behaviour that we have all experienced over the past week as we headed towards the finishing line. Actually, these emotions and behaviour only just scrape the surface of what we, as parents, have had to endure since 1st April 2009. What about Jamie? It is not us that have had to experience the physical pain of what childhood cancer is. Only Jamie can explain how it feels to have had...

Biopsies and surgery to insert broviac line which goes straight into the main artery so as to administer the toxic drugs which could help eradicate the cancer but with severe consequences,

Bone marrow aspirates [x5] - where a large needle is inserted into the bones in 2 places

GCSF and GMCSF injections into the leg

8 rounds of chemotherapy with life threatening side effects

[after round 6, Jamie was critically ill and on a ventilator, to make a phone call home to family saying that Jamie might not make it through the night was the hardest thing we had to do] so a weeks stay in Intensive care followed

1 High dose chemotherapy - I think you would have all seen the awful photo that we released to show you what Jamie was going through at that time back in January

Hair loss, weight loss, loss of mobility, dressing changes [the dressing change is something that Jamie and most other childhood cancer victims, HATE] holding Jamie down for this yesterday took 3 people with him screaming...so this never gets any easier

Infusions of antibiotics, morphine and fluids

Periods of isolation in Germany and USA

Radiation...MIBG therapy [Germany] ... which now, 8 months later, has given Jamie a lifelong side effect, which the Doctors here in the USA had to tell us yesterday...more on that later

12 sessions of radiotherapy

Stem cell Harvest and Stem cell transplantation

8 hour surgery to remove his right kidney and tumour in abdomen [followed by intensive care]

CT scans, ultrasound, X Rays, MIBG scan, ECHO, EKG, MRI

MEDICATION CHALLENGES ... taking and learning. Jamie was on 5 different oral meds in Germany, one which he could not tolerate and made him physically sick [3 times a week]. After high dose, coming home with having to take 8 medications [it would take an hour or more to get him to take 2.5mls...I don't need to explain the frustrations further. Those people around us could see and appreciate how tough this was for Jamie]

Accutane - today we started the 5th cycle of this controversial medicine, 1 more cycle to go in September. John and I really have severe reservations on this drug but what can you do?

ANTIBODY THERAPY [which also included a stay in intensive care and isolation with Shingles]...you are all experts now with the ch14.18 antibody immunotherapy as this is what has formed the heart of this blog!

I am sure there are things that I have missed here but I want Jamie to read this when he is older, this is such an achievement and all before 5 years of age. Of course, all children with childhood cancer, experience very similar things to what Jamie has been through and at this moment in time, there will be parents just being told the devastating news that their child has cancer. Their lives and their child's life will never, ever, be the same again. Fact.

To get ourselves to this point has been a massive accomplishment, one which would not have been possible without the generosity of you all in digging deep and donating to Jamie's Appeal. I often wonder what would have happened if we had not raised the money needed? We still would have brought Jamie here and worried about the cost later. No child should ever be refused this treatment if they are eligable because of cost.

Only a few months ago, the thought of us all being in the States and Jamie receiving this treatment was a distant dream, now a reality, from which we have learnt so much. Along the way we have met some fabulous people, best of all, meeting current fighters of childhood cancer and children who have been free from Neuroblastoma nearly 5 years on. Fantastic!

This is beginning to sound as though it's the last entry but it is not. I just wanted to dedicate this entry to all things medical so that Jamie's achievements and tough times prior to arriving in the USA, do not get lost amongst some of the fun photos of our time here.

Final Days of Antibody Therapy...in pictures

Everybody was thrilled at how well Jamie's body coped with the infusion. Apart from a few temperatures, 2 or 3 episodes of discomfort and some swelling, this round was really non eventful! Jamie enjoyed drawing monsters and showing the nurses his letter 'J' in his name! We have kept the pictures as we recently found out that the Charity FAN [Families Against Neuroblastoma] are running a competition for children to draw a monster picture of what they think Neuroblastoma looks like! I think you'll agree that Jamie has a pretty good imagination and drew about 20 of the same monster design!!

Here is Jamie last Friday morning..we spent ages playing cars, seeing which ones would go the furthest

Here is Jamie with his Brovi Bear. The red bit depicts where the angry cell was and he even has a broviac bag just like Jamie! [Thank you Auntie Mandy!!]

Both of them having some well needed rest!

Here is the artist hard at work on his latest project - colouring pictures of Ben 10!!

Proud of his efforts!!

Jamie's monster pics. He was obsessed with drawing these for most of the day!!

Time for another rest before his visitors arrive!

In this picture, Jamie was minutes away from completing the antibodies!

We filmed Jamie's last few minutes of therapy and when we heard the machine beeping, to mark the end of the infusion, we all cheered. As soon as he was disconnected from some of the wires, his nurse took this photo for us to mark the end of this chapter in Jamie's treatment!!

Here is Jamie being disconnected from the ch14.18 antibody! At last and what a journey for him.

Hooray!!!!!!!

Life Is

Words of wisdom found in this poetry written by Mother Teresa.

Life Is....
by Mother Teresa

Life is an opportunity, benefit from it.
Life is beauty, admire it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.

Life is life, fight for it.

Goodnight from beautiful Pennsylvania

Vicky - mummy to an incredible little boy
XXXXXXXXXXXX

2010-08-17T00:51:00.000+02:00

YAAAAAAAAAYYYYYYYYYYYYYYYYYYYYY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Jamie sailed through this round of antibodies, what a star and he is out of hospital!!! The antibodies are all over and I am still in shock!!! This is an amazing feeling and Jamie is so happy!!

Thank you so much to everyone who has helped get us over here and seen this thing through with us. We are down to our last few days here so this afternoon we just sat in the park eating a slice of pizza and enjoying the weather. Jamie is really well after this round and now all focus is on his 5th birthday tomorrow! I was up until 3.00am finishing his cake but I think he will like it!!! Jamie had a quick haircut aswell to tidy up his regrowth!!

Another entry will follow with pictures but just wanted everyone to know that

MISSION IS COMPLETE!!!!!!!!!!!!!!!!!!!!!

WE LOVE YOU JAMIE!!!
XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

2010-08-14T04:25:00.000+02:00

Update!

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 :)

Vicky

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2010-08-11T17:57:00.000+02:00

The beginning of the end!

A very quick entry as we have to finish packing for the hospital! We have had a great week with Jamie and stayed in Amish country. Jamie had a wonderful time on the working Amish farm and milked the cows and fed the calves!! I will do a proper entry on this later.

So this week is the ultimate week!!!!!! On Monday we were at CHOP all day, there was confusion with medication and they were not expecting us! Anyway, it all got sorted out. I was surprised that Jamie had not put on any weight during his break, he still only weighs 13.6kg but lets look at it the other way, he hasn't lost any!!

The staff were pleased with how well he is looking and his energy!! We are going to send Jamie to Uncle Tim's school of fencing in Australia as we have to engage in sword fights every day! Great exercise for all of us but at 10.30pm we have had enough!!! Jamie's body clock is all over the place and we spoke to another family who have said the same thing.

I can't believe the difference in Jamie this past week. It goes to show how much the treatment does affect them, even after it's finished. This has been a long break from treatment and Jamie has been brilliant!! His behaviour is amazing, he is willing to listen and take on board what we are saying to him [sounds like Jamie's end of year report!!] and he has taken his antibiotics with no problem! We welcomed the Rogers family to our house last Friday as they too were back for final treatment and scans. We were so pleased to hear their good news and hope that Jamie will be the third one to get the all clear, alongside Robyn and Stella!! We had a wonderful day with the Rogers and over a cup of tea and small glass of wine, put the Neuroblastoma world to rights! We are all ready to continue the fight for awareness, research and access to the best treatment!!!

Jamie played so nicely with their children and to see them all at the end of the day in the living room, with cushions from the sofa on the floor, in front of the Lion King, snuggling up, was just great!!!!

Back to Monday.... the final round of antibodies has started with the GMCSF injections. This stimulates the white blood cells and is always given prior and during ch14.18. I say it is the final round but it is in terms of inpatient stay. Round 6 will be completed at home in Germany, the ever so popular accutane!!!! I will put a warning sign on our door before people visit - aggressive behaviour!!!!!!

Our delivery of the GMCSF arrived at 11.00pm Monday night after many phone calls but at least Jamie had the first dose in CHOP that day! Jamie has been so brave whilst Mummy administers the sharp medicine!! I hate it too but at least now I don't shake like I did in the beginning!!!! I truly would not make a good nurse!!!

I have had to be ultra organised to make sure that Jamie's birthday gifts and cake stuff are also ready to take as we will be celebrating the birthday at the RM House!!!

We can't believe that today we are being admitted for the final inpatient stay. It's exciting and anxious and Jamie is very excited too!! I am already emotional so goodness knows what state we will all be in on Monday and Tuesday next week!!

I have one thing to ask of everybody reading this...we all know that Jamie's favourite song is Greatest Day by Take That. He said to me the other day "Why don't they ever play my song over here like in Germany?!" It's true, it is never played here soooooo....to recognise Jamie's achievements and courage please could everyone listen to that track on Monday 16th August and spend a few minutes thinking about Jamie and all the wonderful children who are fighting their battles and WINNING with cancer!!!! Please could Minster FM in York play it and Gini Carlin on BFBS radio!!! I've set myself off again now so I am signing off now!

Good luck to Jamie as he embarks on his final journey with this fight!! You can do it my beautiful boy!!!!! Go, go, go!!!!!

2010-08-04T17:40:00.000+02:00

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!

Ahhh!!

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!!!

2010-07-17T18:50:00.039+02:00

Round 4 ~ part 1

I apologise that for this particular entry there are no photo's. The camera is back in the RM house and I really wanted to get this entry done as I know that people are asking about Jamie!! I will download them asap! So much else has been happening in our lives, not directly linked with NB which will mean change in our family is on it's way again. All will be revealed!

So last week we began treatment again with just the IL2 running through on it's own. Luckily there was room for us at the RM House for Poppy and John whilst myself and Jamie did the first 2 days. Jamie spiked a few temperatures and had a minor episode of swelling lips but that was all!! He enjoyed playing in his room and painting his Spiderman mask that he made on the previous stay!

These are photos that the Child Life Specialist took of Jamie painting his mask. She printed them out for us!

A very proud Jamie with his Spidey mask!

Jamie and I played trains until about 1.15am!!

Poppy also loves Jamie's trains...well..anything thats Jamie's really!!!

A rare moment of sibling appreciation!!

It was lovely to see the Dutch family who are now on round 3. They arrived in Phili shortly after we did. Then, how amazing is this, another Dutch family were next door to us receiving the exact same treatment! It is so bitter sweet that we have the same hopes and confidence when we see other families choosing this option yet at the same time we have all travelled a huge distance. Then we learn that Germany is trialling this very same treatment albeit for a very small number of children...

Progress....it's happening so let's get the rest of Europe interested!!!

If ever a boost was needed that we have indeed made the right decision to take part in this treatment then the fact that the Germans are interested in this IS our boost! We can never praise the Oncology team in Dusseldorf enough for what they did for us and Jamie.

The first part has gone well and Jamie had the nurses laughing [as he always does] with his talk and comments. The funniest one being "When I'm a big boy, I will have a big dinkle!!!!" Honestly, the nurses are still talking about this! I think this is going to be known as a Jamieism!!!

On Monday Jamie was able to have a 2 day break so we went to the RM House and we were all happy to welcome back the first British family who had the antibody treatment. Robyn was back for scans etc and their news was wonderful! She also looked so well!

The heat here has been overwhelming so anything air conditioned is very welcome. On Tuesday we decided to take Jamie and Poppy to the Please Touch Museum. This was a great hands on exploratory toy playground! One of the best things was a real replica of a supermarket complete with trolleys and baskets and checkouts!! Jamie loved going around and filling up his trolley!! We had been given free tickets from the RMHouse and Poppy and Jamie enjoyed it so much! Thank you!

The following set of photos were taken during Jamie's break in treatment!

What an adventurous girl, I think I might nickname her 'Dora the Explorer!!'

Jamie doing our weekly shop, we obviously like bread!!

Back to work in the construction zone! He even clocked in!

The Mad Hatter's Tea Party. Just another meal in our household then!

Each month the RMHouse holds a breakfast and open house for potential sponsors and groups/organisations who are interested in volunteering or donating items to the house. At such event they like to have a family who are in residence to talk about their experience and the support the House gives them. The social worker called us and asked us if we would be that family this week!

So I willingly did my piece and afterwards one of the group came over to me in the dining hall and thanked me. Lets hope we've helped in some small way to make people donate their time/resources to the House!

On Tuesday night we decided to go out for pizza/pasta with the Higgins family before Jamie went back into hospital.

So the dreaded day arrived - admission for the 2nd part ~ combination of IL2 and ch14.18. Today Jamie decided that he didn't want to go to CHOP and fought everything, including me! Clinic days are stressful enough with appts, examinations, waiting around and trying to keep the peace with Jamie so I was not impressed! Results showed that Jamie was dehydrated and needed fluids and that his heart rate was slow. These are not a good way to enter the antibody therapy so Jamie was sent for a scan and an infusion was given to rehydrate.

When our room was ready Jamie was kicking and screaming as he didn't want to go :(. Once he had scratched both of my arms like a ferile cat, he was fine :)! So what a relief that the day was over but as they say out of the frying pan into the fire!

Do you ever get that feeling of being on autopilot and not having time to 'catch up?' I had a serious case of this on Thurs when after a couple of hours of the antibody starting the whole anxiety thing was at it's highest level! So began the usual pattern of Jamie's blood pressure, Drs and staff in and out, not concerned but a little concerned and I broke down in front of the Nurse. She was great and I recovered very quickly!! I just feel as though I am holding my breath all the time!

The staff decided that in order to prevent the blood pressure from dropping any further they would substitute the sleep inducing Benadryl with a different antihistamine. This worked and thankfully, Jamie got through the first day really well!! He had minimal pain, I think the level of morphine was just right as he only had to hit the PCA button once when he said that his head was sore.

Robyn, her mum and Nanny Pauline dropped by to say 'Hi' and 'Bye' to Jamie. I think Robyn agreed it was strange for her to come back to where she had been a patient only weeks before and to see the antibody stuff all over again. She is a wonderfully spirited young lady and after they had gone, Jamie said "I'm a bit sad that they are going." Poppy adores Robyn too and both of their faces light up when they see each other!

It's now Saturday and although Jamie has not had complications on the scale as before apart from fevers, he is keeping us on our toes. As I type, the antibody restarted 1 1/2 hours ago [finishes late at night] and we are seeing some side effects already. His saturation level is dropping again when he is resting and he is on oxygen. During the night, he needed oxygen and respiratory team are coming in periodically to check him. They can hear what they think is fluid around the lungs - a side effect from the antibody BUT his breathing is comfortable. The cough looked as though it was making an appearance again so down came respiratory again to check! That has gone again now so now that Jamie's sats are at 98% I feel as though I can relax a little and get this entry completed!!

We've made it to Day 3 without visiting Intensive Care so things are going well. Today the side effects are happening much quicker but we find as the cycle continues the effects are more accute. Jamie is surprising the staff and at the moment things are going so much better than in cycle 2!!

A pub in York is holding a fundraising event for Jamie this weekend. I have tried to find out details but don't know the name of the pub or anything. Thank you and I hope it goes well!!

Will do another update once this round is over!

Thanks again for reading!

Love

The Inglis Family

2010-07-06T23:43:00.000+02:00

"And the Winner [so far] is..."

What an anxious week, firstly we said "Goodbye" to Granny Inglis who enjoyed her time with us and then 2 days at CHOP for the all important scans. We took the train on both occassions as it's a nail biting drive into the city and with our stress levels already heightened, we thought this would be a better idea.

Whilst keeping up to date with England's fantastic efforts in the World Cup[!!!!] the only results we have been interested in are Jamie's disease re evaluation. 3 scans were performed: MIBG, CT scan and Bone Marrow aspirates.

Jamie coped well with the aneasthesia and we were reunited with our staff from radiology who had the pleasure of our company for 2 weeks every morning way back in March. They and us were so pleased to see each other. Robyn [one of the recovery nurses] even brought Jamie a chocolate pudding desert for when he woke up! We have this running joke with her as Jamie would ask Robyn for food each time he awoke from anaesthesia! He thinks that she cooks the food to order!!!

So, the MIBG scan is designed to show any hotspots, ie any NB cells that are big enough to be detected. We received the phone call whilst waiting on the platform for the train home for the first result, MIBG scan.

MIBG scan = CLEAR!

48 hours later we received the final results;

CT Scan = CLEAR!

Bone Marrow Aspirates = CLEAR!

It's been 6 months since Jamie finished dose chemo and received his stem cell transplantation. In many cases, children relapse within this short time.

JAMIE IS STILL CLEAR FROM CANCER, 6 months later! Jamie is thrilled as he truly understands what this means. He is a very bright boy who knows far too much about cancer, more so than you or I.

Of course he is by no means cured but this is the best news we can hope for!!! We will continue to hope and fight for as long as needed [probably the rest of our lives]. I often think back to the day of diagnosis and what a beautiful Spring day it was. I was 6 months pregnant, enjoying work and excited about the future. Little did I know how a couple of hours later this rollercoaster was about to start for Jamie and our little family. Along the way we have gained so many new friends and we know that people are following Jamie's progress and so it seems that our family has grown! We all share the same emotions as we hear and read about Jamie, just at different levels I suppose.

We have always said that our life is like a Soap Opera! Whilst out with John's mum, he took this picture which was rather fitting!!

Although Jamie and Poppy's Granny was only here for a week, we packed a lot in, amongst our hospital visits. In fact we spent a whole day at the hospital as Jamie had an ear infection so they kindly gave Jamie antibiotics through his broviac line which meant we didn't have to fight with extra medication on top of the Accutane!!

The surrounding countryside in Warminster is beautiful and in the evenings we get a free light show with all the fireflies! Granny enjoyed our walks and here are a couple of photos of us all just 5 minutes walk from our house!

Jamie was obviously not as interested in the deer as we were!!!!

I love this photo!

Saturday 26th June

You may recall from a previous blog entry the wonderful work that this Foundation does. A Childhood Cancer Symposium was organised by them at a hotel in the City. We travelled the day before so that Granny could see some of the historical sights.

The Liberty Bell

Jamie's history lesson. I teach on the go but poor kid can't escape his teacher!!!!

Poppy with her baby. This doll goes everywhere with us!!!

We all had fun on the 'ducks'

We relaxed in this street in the early evening

The Symposium was really useful. For the first time since I don't know when...both children were taken off our hands and entertained with lots of activities. This enabled us to focus fully on the presentations. One of the presentations about new trials and treatments focussed on the 14.18 antibody therapy so this was of particular interest to us!! We also learned this week form the NB conference in Denmark that there is now a lot more talk about the treatment that Jamie is receiving. This is brilliant news and we really hope that one day soon, families can access this in Europe. Whilst we have good days out here and we try to make the best of our situation, it is a long time to be away from family and friends and without that support. Hey, we are getting towards the end now!!!!

We all found the Symposium interesting and enjoyable and Jamie and Poppy had a wonderful day! Thank you to ALSF!

The following day, Sunday, we had been invited by Tina [Travis Manion Foundation] to the church that she attends as there was a concert and lunch afterwards. We were late in arriving as Jamie was being really difficult with his medicine and pushing us to the edge!! We saw the last 10 minutes of the concert, all about Hope and met and heard other families talk of their difficulties with serious childhood illnesses.

Most recently....

We have just celebrated Independence Day here with a jam packed weekend. We are aware that our time here is getting closer to the end so we want Jamie to experience as much as possible whilst he is well enough! On Friday evening, Jamie and I made Independence day cakes!

The end product!!!!!

Lindy and his family, who helped us when we first arrived, came over for a bar b que and it was great to catch up with them. They have had such an interesting life and it's always nice to hear their stories. They are so kind and their children are lovely.

So 4th July we met up with John's cousin and her husband. We all drove into the Country and they took us out for lunch. We are in the middle of a heatwave so it really was too hot!!! At one point it was 104 F!! The air conditioned restaurant was a huge relief! We travelled to a National park where their daughter was at camp, hoping to be able to meet her. Unfortunately we were just a bit late as the park was closed and help was limited from the Park Ranger!! We hope to go and visit before we leave so that their children can meet their extended family!! We saw some beautiful scenery and arrived back late at night and ended our day with a firework display in the garden. Poppy was transfixed by the sights and sounds and Jamie well, he's getting better. Those of you who have been with us to the JHQ firework display know that we end up coming home after 5 mins!!!!!

Jamie meets Spiderman Artist!

Yesterday, Tina, who helped us get furniture for the house, invited us to her house. Her house was gorgeous, set in 3 acres of land in the middle of the countryside. A pool and shooting range completed the house!! She called the night before and told me that she had arranged for us to visit some people that she knows that live 10 mins from her. Scott Hanna is the Inker for Marvel Comics who works on Spiderman, Iron Man and The Incredible Hulk!! Tina knew that Jamie is currently a fan of Spiderman and made a call for it to happen so that he could meet Scott and see his studio and do some drawing with him!!!!!!!! His wife [very nice lady] is also a fashion designer, well known in this area and has appeared on TV doing makeovers and has also taken part in Project Runway! They made us so welcome and we were there for over an hour and a half!

Jamie and Scott got down to business and both produced their own version of Spiderman. Bid for the best!!! We have some lovely memories to cherish of this visit and we have been given permission to share our photos with you all. They really were easy going and interesting to talk with. The artistic flair is an Inglis trait and Scott can see that Jamie already shows natural talent!

Jamie drew this eye shape by listening to Scott and copying his shape!

A huge thank you to Scott, his wife and to Tina who made this happen!!

Tina cooked us a wonderful meal and Jamie had a great day, meeting Scott Hanna and playing with Tina's children.

Back to reality now as tomorrow Jamie is admitted for cycle 4 out of 5 antibodies. This cycle is in 2 parts and is a repeat of the difficult cycle 2 where he ended up in Intensive Care. The first part is non eventful, it's when the IL2 and ch14.18 are combined that children experience the worst side effects. This combination starts a week Weds and tomorrow he is admitted for 4 days of IL2 on it's own.

We are bracing ourselves for a worrying time over the next 10 -12 days but Jamie is in very safe hands and we have complete confidence that any situation will be managed quickly and successfully. However, we won't be able to breathe properly until this cycle is over. Keep all of those positive vibes coming our way please as this is the most difficult part for Jamie. Once this cycle is over we are on the race to the finishing line!!!!!!!!!!!!!

Thank you for reading!!!
Love from us all in Philli!!

2010-06-23T05:10:00.004+02:00

Cycle 3 of Antibody Treatment [ch14.18]

Wow! Cycle 3 is over and this blog might be quite short because there is nothing to say other than, Jamie coped so well, the best one yet...no pain, no cough...nothing!!!!!!!! In between his Benadryl sleeps he would be up and about playing. We still can't believe it!!! Only 2 more rounds to go! He just amazes us, seriously!

So here is a little review of our week!!

Admission on Wednesday went smoothly, no lengthy waits for a room and blood counts were good. Jamie was charming everyone as per usual, telling everyone that he loved them! All the staff laughed when he hugged me tightly and said "I love you so much mummy that I could gobble you up!!"

We spoke with the Psychologist about the workshop for Challenging Behaviour and it had to be postponed because only 2 families had come forward for it! We are hoping it will start next week.

Our room this time was a little on the small side and in a different wing of the unit, a bit isolated really but to cheer ourselves up we set about the familiar task of making the room our own. Each admission we do slightly different things and this time round Jamie really wanted 'Spiderman' included. We tried with our limited resources!

Here we are having just arrived in the room - we need a makeover!

The flowers were returned to us from the

'Wishing Garden from the ALSF event

Even his door gets a makeover!

Treatment started and we were so nervous but the only issue Jamie had on the first day was an increased heart rate. The Doctor was a little concerned but as Jamie was just an hour away from finishing the infusion, they just kept a watchful eye over him.

So that was it, the next 3 days were uneventful! Jamie got on with the job in hand and slept when he needed to, played when he needed to and eventually pooed when he needed to [days of being a bit stuck up there required his magic drops which loosen things very quickly!!]

The following set of photos show the remarkable Jamie playing whilst having antibodies going in!!!

Decorating himself with a dry wipe pen. Came off very easily!!

Jamie also wanted to make a Spiderman mask, so here he is with Brittany, his Child Life Specialist. She is so lovely and is so good with Jamie and Poppy...

Just chillin!

The next few weeks are very hectic with hospital appointments with the dreaded disease re evaluation. This means that Jamie is at the mid point and will have all the scans done again to see if the cancer has come back. This will never get any easier and each time it is an anxious wait for results.

On Saturday we are attending a Childhood Cancer Symposium in Philadelphia which has been organised by Alex's Lemonade Stand. Lots of different sessions about dealing with cancer, survivorship and issues with this, nutrition and new treatments and trials.

Granny Inglis flies out from Scotland today. It's been a tough year for her too with other family events - not just Jamie's illness, so it will be lovely for her to see Jamie and Poppy and enjoy the hot weather!

2 weeks ago, Maj Lacey, based at the Naval Station in Willow Grove, helped us in acquiring a mattress for the spare bedroom and some small pieces of furniture to finish furnishing the guest room. The Mess had a collection for us and also presented us with 2 gift cards to be used in the grocery stores! It was very unexpected and very kind...thank you!

Poppy is doing well, crawling and moving in every fashion possible but we just don't understand this crawling forwards business and so she gets herself stuck in the most awkward places! One of the children in the RM House who also has NB really likes Poppy's name and has called her the 'flower baby!' This has reminded me of our friend's daughter [the family we went to the theme park with] who on that day said to me "Miss Vicky [sooooo polite!] Poppy's eyes are like blueberries!" Beautiful!!

Here is our flower baby with eyes like blueberries

Goodnight!

XXXX

2010-06-15T03:19:00.047+02:00

Alex's 'Original' Lemonade Stand ~ 10th Anniversary Event at Penn Wynne Elementary School

'FIGHTING CHILDHOOD CANCER, ONE CUP AT A TIME' [ALSF]

http://www.alexslemonade.org/

We dedicate this blog entry to Alex, her parents and her legacy, that there will one day be a cure for all children with cancer... and to all those children who are currently fighting cancer, have earned their angel wings or have battled and won

Alexandra "Alex" Scott

January 18th, 1996 - August 1, 2004

Those of you who have been following the blog will know that we keep mentioning this Foundation as they have helped us so much. Now you will learn the truly amazing, emotional story behind this Foundation and it's achievements. I may repeat some information from previous blog entries but I want to start from how we were first made aware of ALSF. I will try to be brief but when I start writing, I find it difficult to stop! Where appropriate I will also reference text taken or paraphrased from ALSF literature etc...

Way back in March 2010, [yes it really is that long ago!] we arrived in Philadelphia at CHOP. Almost immediately, people we were introduced to in those early days told us of 'Alex's Lemonade Stand.' In the hospital, the awareness was all around, staff wearing t-shirts, children wearing wrist bands etc...

The day hospital where transfusions take place is also named 'The Alex Scott Day Hospital.' On meeting with our Social Worker and Neuroblastoma Nurse Practitioner, we were quickly aware that some roles within the onco unit are as a direct result of funding from ALSF and that this was a big non profit organisation. We needed help of the 4 wheeled type and could not afford to hire out a car for 6 months. We were advised to approach the ALSF whose main sponsor in the beginning was VOLVO cars. This partnership meant that we were able to have a lease car with Volvo at no cost, other than insurance which we paid for ourselves. We know that other families have also made use of this.

A few weeks later at the Ronald MacDonald House, volunteers from ALSF came to cook for all the families. By pure chance, I was packing up items from our kitchen locker as Jamie had completed radiotherapy and we were moving out that day. I needed an extra bag or two and went up to one of the volunteers. She immediately recognised the accent and said "Are you the English family that we have just helped with the car?" Obviously we were 'that' family and she introduced us to Alex's father, Jay Scott. We thanked him for their help and he explained how his family had indeed stayed at the RM House some years prior.

How Alex's Lemonade Stand Developed

Jay's daughter, Alex, fought Neuroblastoma for most of her short childhood and for much of her treatment, was a patient of the Children's Hospital of Philadelphia. Her wish was to find a cure for all children with childhood cancer. This at 4 years old...what an amazing, selfless thing to think of and wish for!

The following extract has been taken directly from her website

'In the year 2000, the day after her fourth birthday, Alex received a stem cell transplant and informed her mother, "when I get out of the hospital I want to have a lemonade stand." She said she wanted to give the money to doctors to allow them to "help other kids, like they helped me." True to her word, she held her first lemonade stand later that year and raised an amazing $2,000 for "her hospital."

While bravely battling her own cancer, Alex continued to hold yearly lemonade stands in her front yard to benefit childhood cancer research. News spread of the remarkable sick child dedicated to helping other sick children. People from all over the world, moved by her story, held their own lemonade stands and donated the proceeds to Alex and her cause.

In 2004 when Alex passed away at the age of eight—her stand and inspiration had raised over $1 million towards finding a cure for the disease that took her life. Alex’s Lemonade Stand Foundation was started by her parents in 2005 to continue the work that Alex began. Our mission is simple: to raise money for and awareness of childhood cancer causes—especially research into new treatments and cures—and to encourage and educate others, especially children, to get involved and make a difference for children with cancer.

Since Alex set up her first lemonade stand in 2000—truly exemplifying the saying “When life hands you lemons, make lemonade”—we have raised more than $30 million, with more than $12 million of those dollars coming from lemonade stands. That money has helped to:
• Fund more than 150 cutting-edge research projects 

• Create a travel program to help support families of children receiving treatment 

• Develop resources to help people everywhere touched by childhood cancer'

Please visit their website www.alexslemonade.org

On their website you can watch a wonderful video of Alex which also includes footage from CHOP and interviews with Jamie's oncologist, Dr. Maris. Click on the link 'About us' then click on thumbnail 'About'. On that page if you scroll down, you will find the 'youtube' video.

So this year marks the 10th Anniversary since Alex set up her first lemonade stand in her front yard and each year the 'Original' stand takes place at the Elementary School that Alex attended.

Jamie and Poppy did handprints for the 'Wishing Garden' during Jamie's first round of antibodies. The Child Life Specialist explained that their photographs and handprints would be made into paper flowers for the ALSF event.

On Saturday 12th June 2010 we attended the event and I think the following words encapsulate the day ...fun, emotional, inspiring and HOT!

Whilst driving to the event we saw Lemonade Stands at roadsides with people collecting donations. Jamie was thrilled to see his first stand!

The fun began in the car park, a short distance from the school. Our transport to the school was on a boat with wheels!

It had a real party feel to it with music and volunteers acting as guides and giving us a brief account of ALSF and the neighbourhood that Alex lived in.

When we arrived we were greeted at the 'Welcome Booth' by a lovely lady called Shirley who has been following Jamie's blog! They had a special gift bag for Jamie and Poppy with T shirts, bandanas, wrist bands, pencils etc... THANK YOU!

The first thing we did was go and get some lemonade as it was so hot. Jamie enjoyed the many activities, especially the bouncy castle and having his face painted as Spiderman!

Emotionally this event gave us all time to reflect on our own experiences with cancer whilst at the same time being in complete awe of Alex and her legacy. Ultimately it was the chance for cancer heroes such as Jamie to stand up and be proud of what they have gone through and achieved. For Jamie, his fight with Neuroblastoma is not over just yet but my goodness, he is edging closer and closer to completion of treatment!

Emotions were high as Alex's parents, Liz and Jay took to the stand and spoke about their daughter. As soon as her voice wobbled that was me gone! [Gulp, deep breath and another sip of lemonade.]

I saw the next 10 minutes in a blur. Over the PA system all the cancer heroes were called to the stage. Seeing my Jamie up there with his Daddy was the first time I had 'accepted' that Jamie was part of a group that you can't imagine ever having to face albeit a very special group who have earned their place on that stage. Seeing these children also made me angry...why on earth do these children and families have to go through this awful journey? For some they have come through to the other side and that should be celebrated.

Time for the Butterfly release as butterflies and wishes are synonymous with Alex's 'Original' Lemonade Stand. This extract is taken from the ALSF programme, by Liz and Jay Scott

'The butterfly release reminds us of the beautiful spirit of all children with cancer and also brings alive an ancient Native American Legend. Legend reveals if anyone desires a wish to come true, they must capture a butterfly and whisper that wish to it. Since butterflies make no sound, they can't tell that wish to anyone but instead the butterflies carry that wish on their wings. So by making the wish and releasing the butterfly, it will be taken on the butterfly's wings to the heavens and be granted.'

A beautiful piece of music was played over the PA system as the children released the butterflies. By now the floodgates were well and truly opened and tears rolled down my face as Jamie let his butterfly go. It's easy to guess our wish.

Gulp, another sip gone and cup is now empty...but we keep filling it up and keep fighting!

We also met some wonderful families and NB survivors. We will see them again in 2 weeks time at the Children's Cancer Symposium but to end the day, Jamie was running around, full of energy then said to me "I'm glad Alex did a Lemonade Stand because I have had a good time!"

On seeing Alex's father, we had to tell him this! When we got home, Jamie also explained that he wants to do a stand to be a kind boy and let other children have fun. I took a huge gulp then!!

In the bath that evening, Jamie and I were role playing with the squirty toys. This is his time where he often talks about what is happening or has happened to him by taking on the persona of a turtle, crab or octopus. Tonight it was the turn of Mr Turtle! Our conversation went like this:

Turtle [Jamie!] : "I've been having treatment."
Mummy:    "Have you, what is that for then?"
Turtle:         "I've got cancer." We have never mentioned this to him before just the name of it!
Mummy:      "O'h, I'm sorry Mr Turtle, what have you had done?"
Turtle:           "I've had chemo in Germany and now I go to CHOP. Some children have blastomas in the head, their eyes or their tummy. Some of them get better but I'm not.
Mummy:        "Of course you are getting better!"
Turtle:             [laughs] "O'h yes, I forgot, I'm having antibodies and they eat baby blastoma cells."

We ended this bath time with Jamie having his hair washed for the first time since losing it all last April. Just your average bath time then really! We were mentally exhausted by this point!!!!

Sunday 13th June 2010

We were watching CBS 3 News and there was a whole programme dedicated to ALSF and I am proud to say that Jamie and myself were also featured with scenes from CHOP talking to the staff!!!

WHAT A WEEKEND... now we get ready for admission on Weds for round 3 of antibodies.

Jamie looks great and is so happy at the moment. He really is full of life and ummm, well also full of oranges [not lemons!]. This photo was taken at breakfast one morning after a mammoth orange sucking session. I know we have been encouraging him to eat lots of food with Vit C to aid absorbtion but I think you'll agree that this is a bit over the top Jamie!!!!

GO JAMIE - we love you so much. Lets hope that round 3 is not as traumatic as the last one!

Jamie had clinic today and everything is good ~ he just needs to keep up with the hydration but there was me thinking that he was actually drinking quite a lot. O'h well, nothing is going to be perfect is it? We travel into Philli again tomorrow to get settled into the RM House before Jamie's admission on Wednesday. Now that I have figured out how to enter my own blog [this being my first attempt!] I will update over the next few days as treatment gets under way.

Huge thanks to Danni and Tristin Hurst who have done an amazing job entering my often lengthy updates!!!

Oops have just remembered that I agreed to submit another article for the JHQ Bulletin! There is a deadline for this one!! Best go!!!

As always thanks for reading!!!

Vicky and co
XXXXXX

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American Road Trip Part 2

2010-06-14T22:05:00.002+02:00

After a good sleep we packed our things up and moved on. Today we were visiting a very special family. Bob and Annette Sandri were introduced to us via Maj Matt Grieser who was based in HQ ARRC, Rheindahlen. He basically made all of our links here with the US Army, possible and contacted Bob Sandri before we arrived in Philadelphia. I say that the Sandri family are special because they have had to face the toughest challenge ~ their son, Matthew Sandri, a Sgt in the US Army [a medic in the 82nd Airborne] was killed in action in Iraq, in 2004.

Bob, Annette and Lydia Sandri [with my mad lot!!!]

We can't begin to imagine what they have been through over the past 6 years and they were so welcoming to us insisting that we stay the night with them. During our time with them Bob would talk to us about the events leading up to their son's death, the medics who were with Matt when the explosion happened and how he had courageously protected his fellow comrade by diving onto him. His comrade survived all of this and even made a surprise call to the Sandri family. Bob told us that they weren't expecting the visit and that the poor soldier had spent the night in his car, outside of the Sandri's home as he had lost his nerve! I think he knocked on their door at lunchtime the following day!

Bob and Annette spoke very movingly and openly about their son and at the time of all of this, their youngest daughter Lydia, was only 8 years old. Lydia, wrote to the then US President, George Bush and the whole family were invited to Washington to meet Mr. Bush in the White House!!!!!! The photographs of their meeting were wonderful and they said that Mr and Mrs Bush were great. Good on Lydia!

In honour of their son, the 82nd Airborne Division, developed an interactive medical training centre for US Soldiers with state of the art facilities. The Sandri family have been heavily involved in this as they keep very close links with the 82nd Airborne Div and have attended ceremonies and demonstrations of the facilities. We saw some of the photographs of the centre. It is amazing and could be a benchmark for future training. They even have a dummy soldier who can be controlled from the control room to present with complicated symptoms which can be altered at any time whilst medics are dealing with a particular scenario.

Poppy and Jamie loved it in their house ~ a traditional 3 storey house with a beautiful veranda and swing. Poppy even fell asleep on Annette whilst on the swing!

There were loads of toys for Jamie to play with and we can't forget to mention, Jack the dog!! Even dogs are supersize over here! We are dog lovers and sadly on health advise had to re-home our beloved dog last year. We still find this very difficult as Barney was with us from 11 weeks old. Jamie adored him and still talks about Barney and when are we going to get another dog? So Jamie and Jack became friends but Jack's friendly advances towards Poppy were not so well received at times!! She enjoyed the chase of stroking him and pulling his hair and was content with him lying next to her!!

We had a lovely meal with Bob, Annette and Lydia [their other son, Blake was away at West Point on a pre-selection course] and then went for a walk around the town, stopping off for ice creams and visiting the various monuments dedicated to fallen heroes from wars past and present. Very sad to see their son's name here too.

Jamie ate 6 eggs at their house and the next morning he wanted eggs again!!!

Here is Jack...is he supposed to be on guard?!!

John went to visit Matt Sandri's grave with Annette before we left.

Poppy and Lydia

So that marked the end of our American Roadtrip!! Thank you for your hospitality!

We all had a wonderful few days away and hope to meet up with both families again in the near future.

No hospital appointments for the rest of the week but still on Accutane. Jamie is amazingly well and I am pleased to say has coped well with the side effcets of the Accutane.

We have a Charity event to attend at the weekend. Alex's Lemonade Stand are celebrating 10 years since the original stand was set up. The open day is on Saturday and I am sure there will be lots to write about!!!

Bye for now!!

The Inglis'

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The Inglis' American Road Trip

2010-06-14T21:59:00.000+02:00

PART 1

Way back during our first few days at the Ronald McDonald House, we met a lovely American family. Their son is a few months older than Jamie and their daughter is 7. Their daughter was having treatment at CHOP [nothing to do with cancer] and we met up with them again during their follow up visit to CHOP. We decided it would be nice to meet outside of the hospital environment and so with the beautiful weather and Jamie's break in treatment, the timing was perfect for us to get together on Saturday at a theme park!

Our roadtrip started last Friday, so we quickly booked a place to stay, packed the car [again], we checked and double checked that we had all medication and supplies for line flushing and dressing changes and... headed towards the mountains of Pennsylvania. It took about 4 hours as there were roadworks towards the end of the journey. The scenery was beautiful until we hit the traffic jam. As we slowed down, Jamie could see things flying around and asked what they were. John and I said "O'h, probably supersized flies!!" The supersized flies suddenly seemed to multiply and as we came to a halt, the massive truck alongside us was a bee truck with some very angry bees escaping and swarming all around! Of course, we seemed to be stuck alongside this truck for ages and it was just horrible. The photos we took are not that clear but these bees were everywhere!

Our friend, Michelle, called us on the cell phone to make sure that we were still coming and her children were so excited! Jamie spoke with them on the phone and asked if they were going to the fun park with him!

On arriving in Danville [your destination is on the right!!] we couldn't find the place we were staying in. The Sat Nav kept taking us to the river!!! Telephoned the Inn and they gave us better directions! Jamie and Poppy had been so amazing in the car but they needed fresh air!

By the time we were settled and ready for a walk into the small town, daylight was already fading. The sunsets here in USA are beautiful but very quick!!! Jamie enjoyed the guns in the Memorial Park and playing hide and seek whilst I was listening to an American Amateur Dramatic group rehearsing some Shakespeare in the Park at dusk! Jamie was happy to see all the fireflies again and on our return to the Inn [which was just in front of the biggest hospitals in that region!] we thought we would have a meal at the restaurant. We sat outside and Jamie was a star! At first Jamie was not tempted by anything on the menu and decided that he wouldn't have anything. He sat and thought and said "I have an idea, how about I have pasta with cheese melted all over it?" Great plan but not on the menu. We asked and they provided Jamie with a huge plateful of spaghetti and melted Mozarella! He was so thrilled and just said "Wow" with a shriek when he saw it! He told the waitress "It's the best pasta I have ever had!"

I know that we recount Jamie's eating habits as though it is the most important thing but truly it is!!! To see the joy on his face at having something that he has finally managed to decide to eat and enjoy is just wonderful. He ate what he could and we boxed up the rest for him to enjoy for breakfast!!! Mummy and Daddy's meal was great too, as was the wine and the fact that Poppy slept throughout the whole meal! This was one of the best evenings in a long time!

Saturday morning was very hot and sunny - after the effects of the air con in the rooms, walking outside was like walking into an oven. I did panick a bit at the fact that we were all going to be out in the heat all day. When Jamie is on Accutane, he is not to be exposed to direct sunlight but we knew there was going to be lots of trees and shade in the theme park.

Jamie's morning had started as per usual...digging his heels in about taking the Accutane, getting very cross about something which he wouldn't tell us why or what it was about. Constant distraction techniques so as to delay the Accutane. The distraction techniques were based around him eating "After I have finished my pasta then I'll have more pasta before my accutane!!" If we didn't have plans and had 2 hours to spare then this would have been an option. Still, I really do not want to use food in our battles as his appetite is getting so much better! Luckily, Michelle and her family had been held up in traffic so we had golden minutes to get the medicine in before we could enjoy the rest of the day!

Their knock on our door was a surprise for Jamie, he didn't know where we were actually meeting and his smile as the 2 children came in and greeted us was lovely! Michelle showed me her wedding album, they were married last year, at the place we were staying in. Once all the 'mwoahs' were out of the way and gift of strawberries put in our fridge, we set off!!!!

What a wonderful place the theme park was. Nestled in between the hills with loads of shade and trees!!! No entry or parking fees and the rides were 75c each. Bigger rides were approx $1.50. Jamie loved the Mad Hatters Tea Cups and I have to say, they were pretty fast for a Tea Cup ride! I think Jamie went on these 3 times!! It all got a bit much for Jamie as he was too excited to have a sleep so poor Maria and Steven [the familes 2 children] ended up doing what Jamie wanted to go on. They were so understanding as were their parents!

We left the park at 7.30pm, totally worn out and hot!!! We couldn't believe how after our short ride back to the Inn, with Jamie sleeping, he suddenly had loads of energy in the evening!

I know that Michelle will be reading this so thank you once again for a wonderful time and yes, when we go back, we'll meet again!!

On Sunday we moved on to another town to visit a family who had helped us through the Travis Manion Foundation. This I will save for another blog update as out of respect they need a piece dedicated to them. Their son, a Sgt in the US Army [a medic in the 82nd Airborne] was killed in action in Iraq, in 2004. What they have done and continue to do is inspirational.

Today, it is raining but we are all enjoying just being together. Jamie, who is coming to the end of this 2nd cycle of Accutane, is having less and less of the mood swings and is chirpy, cheeky and happy!!! We think he is putting on weight as 2 pairs of trousers now stay up on their own! He is so proud of this!! His appetite continues to improve and he does things to the extreme! It's a bit like the famous book by Eric Carle 'The Very Hungry Caterpillar!!! On Tuesday he munched his way through 4 bowls of strawberries and cream and on Wednesday morning for breakfast he ate almost 4 whole oranges [well sucked the juice out of them!!] I know that we are encouraging him with the oranges to help with absorption of food but rather over the top, don't you think?! We took a photo as evidence as we found this amusing!!!

We do read any comments that are left on here so please feel free to leave messages for Jamie or comments. Once I've changed my password [forgotten it again!] I will acknowledge any comments!!! We would love to hear from our friends in the German Community who are still following Jamie's appeal.

The fundraising is continuing. We have just learned that a lady called Michelle Leonard, won a competiton on TV and has donated her winnings of €5,000 [euro's] to Jamie's appeal!!!!! Michelle, wherever you are and if you are reading this, a MASSIVE THANK YOU from us all in Philadelphia!!

Bye for now!!

Love from us all in wet, miserable Philadelphia!!

A bit of well deserved time off for Jamie!

2010-06-03T20:11:00.000+02:00

It has been a holiday weekend here, as the Americans celebrate Memorial Day with stunning weather to match the holiday mood! Jamie's Godfather flew out for a brief visit and we all had a great time. We invited Henry and Barbara round for a bar b que but Jamie got really tired so spent most of the afternoon asleep in bed! Jamie is coping very well with the Accutane this time...it still takes a lot of patience to get the Accutane in him but we haven't had too many mood swings compared to the first cycle of it.

Tom has seen first hand though how quickly things can change with Jamie! I apologise Tom if it got stressful at times but he knows that just because Jamie is ill, we still have to try and maintain boundaries for Jamie. A very hard balancing act!

On Sunday we took the train into Philadelphia to show Tom the sights of the city. The weather was amazing and we all had a great day. We ended the day by discovering an Irish bar! We sat outside and enjoyed a couple of relaxing drinks and reminiscing about the good old days! Whilst there we saw one of Jamie's nurses who stopped and had a chat with us. A few minutes later the waitress came back with a round of drinks saying that they were from our friend [Jamie's nurse!] Thank you Preetha, it was a lovely gesture and one which we all enjoyed!!

We have lots of photos from this day to add!

Tom's visit went by very quickly and on his last day with us we decided to visit the local Zoo. Put it this way, it was advertised as a Zoo but on entering an industrial estate and seeing an office building with the zoo logo, we thought that we had come across the business office. I jokingly said that the zoo was probably in the hangar next to the office...I wasn't joking!!! What they called a zoo was a hangar with some insects in! We decided not to pay the $9.00 and view this! How very strange!!!

We have a complete break from treatment and hospital appointments and are planning to chill and relax and discover our local area.

Jamie's appetite is making us laugh at the moment. We all know that he goes through phases...this time we are on hot dogs for breakfast, lunch, dinner, snack!! He is also trying lots of different cereals and is drinking lots of milk and water. Jamie is also enjoying fresh oranges...these are also Poppy's favourite and she shouts and screams with delight when she sees the oranges!!!

Food shopping is a hit with Jamie as he likes to talk about the different foods and where they come from. Poppy enjoys sitting in the shopping carts and everyone was laughing at her yesterday as I had to pad the back of the seat with a thick blanket because she gets so excited and thrashes and bumps herself up and down!!!! Had to keep her away from the oranges though as she would have tried to have got out!!!!

With temperatures of 100F, the air con is on all the time but I am not complaining!

Must go now as Jamie is on his third helping of cereal and he needs supervising!!

Love to you all and photos will be on soon!

The Inglis Family

Completion of Round 2

2010-05-25T20:17:00.000+02:00

This proved to be very difficult for Jamie. After the problems of Thursday, we were experiencing different problems on Friday afternoon with Blood pressure. Basically his blood pressure was too low and could not be stabilised. His lips had no colour in them but blood and platelets given and things seemed a bit better. John was taking over from me and when I thought things were okay for me to leave I left to go the Ronald McDonald House. 10 minutes after sitting down and thinking about Jamie, I had a call to say that Jamie was in intensive care.

I rushed straight back to the hospital, collected the things from the room [we had to pack the room up too] and a nurse took me up to ICU. Jamie was fine to look at but the low blood pressure was causing concern. The antibody had to be STOPPED. He had managed 7 1/2 hours out of a 10 hour infusion. We were gutted that it had to be stopped but for Jamie's health it was the best thing.

Oncology suggested that they start the next infusion as planned on Saturday but 2 hours before the IL2 and for over 20 hours instead of 10. This seemed to work. Did he tolerate this well??? If you can call screaming with pain as his mouth and face began swelling and going crazy, then yes, he did tolerate it well without too many blood pressure issues.

It's been a long weekend up here in ICU with Jamie's strength and character the most difficult to deal with! At the moment he is very swollen and has so much fluid in him but he has managed to complete the IL2 and ch.1418 together!! Pheww!! It was a bumpy ride and at one point we thought about taking him off this programme completely. Seeing him in so much distress was awful but now things are improving and he should be going down to his onco unit later today.

WHAT A STAR!!!!

Bye for now...

Day 1 - Second Part of Round 2

2010-05-25T20:14:00.000+02:00

THURSDAY 20th MAY 2010

IL2 and ch.14.18 antibody!

So the gruesome twosome are going in as I type. We have been told over and over again how this is the worst combination and to prepare ourselves for a bumpy ride.

The IL2 infusion began first at about 9.00am. I had been up since 6.30am with Jamie who asked "Mummy, can I order now, is it open?" This is the room service and on his agenda to day was eggs, sausages with onions and green pepper, followed by French Toast. Suffice to say he had a forkful of each and that was it! He got fed up with it and moved on to the lunch menu of garlic bread and tomato soup. We had a quick telling the time lesson so that he could see we could not order the lunch just yet!!!

All the other meds were done, one of them orally which Jamie fought about. In the end, I had to leave the room and then he took it with his nurse, Laura. Laura incidentally has worked in the UK in the John Radcliffe in Oxford [my hometown and place of birth] and has looked after some of the Neuroblastoma patients that we are in contact with via facebook! Very small world!!!

There seemed to be a delay with the 14.18 antibody arriving ~ we were later told that pharmacy had wrong info and had prepared a dose which was too small. OOPS!! Back it went and we finally kicked off at 1.00pm.

On going for a coffee I caught up with a lovely family whose Grandmother and friend are from Scotland with very broad accents!! We had been chatting at the weekend where I learned that her Grandson was admitted 3 weeks ago. After an initial diagnosis of growing pains from family doctor it turned out to be a rare cancer which had spread everywhere, terminal and weeks to live. Aged 17, he passed away this morning. The pain on their faces was unbearable. All I could do was hug them and shed my own tears for the hell that they have all been going through. How can something so bad grow so quickly and silently? Well we know about that, don't we.

This is what happens when you are thrown into this world. Families share their most desperate and private times as a form of mutual understanding but in such a dignified manner. Unfortunately not all the stories have a happy ending.

Back to our fight for a happy ending...

Sleep induced Benadryl meant for a fairly event free morning and early afternoon. I even managed time to read!!!

John and Poppy walked to the hospital in the beautiful sunshine and warm temperatures. Apparently there are 2 movies being filmed in Philadelphia at the moment and the Art Museum Steps, famous in Rocky movies, maybe being used again? Very posh set up with glass type conservatory/marquee thing. Could be graduation of course! I saw lots of graduates at the weekend, heading off for their ceremonies. It brought back very happy memories!

Poppy was so pleased to see me and Jamie! Jamie was awake but wanted to show his daddy his nutritional drinks that he is trying and very proud of! We are on such a mission to beef him up because he and we do not want him to have a feeding tube. Weight crept up very slowly this week. Any weight gain though is good though?

I did laugh to myself as on the nutrition tray were 2 small pots of coloured 'icky, sticky stuff.' One was an artificial bright red liquid and the other dark brown. I thought that the chocolate one was a nutritional substance to be added to full fat milk. When I asked the dietitian what it was she told me that it was Hershey's chocolate syrup! Hum mm, we want calories and fat but a few vitamins and minerals wouldn't go amiss! Chocolate syrup!!!!! O'h well, we are in America!!! Jamie didn't like it anyway!!!!!!

AFTERNOON:

Things were going well, Poppy was playing, John and I were keeping a watchful eye over Jamie whilst catching up with emails. Jamie continued to sleep, all vital signs were good. John went out for a run [think he secretly likes the idea of running up those Rocky steps!!] and then the excitement began. It went a little something like this...

1. Poppy pooed, I gloved up, trying to contain a 10 month old from rolling in her own faeces

2. Jamie wakes, screaming, clutching his throat

3. In calm soothing voice mummy says above the din "It's OK, Mummy's here, where does it hurt, are you in pain?" What utterly stupid questions when the poor boy is holding his throat and screaming. I simultaneously stretch over to press emergency button [with poo free finger], whilst holding Poppy with one hand to stop her rolling off the sofa bed

4. Couldn't hear call being answered but they could hear the commotion

5. Keep reassuring Jamie, complete nappy change in record time, gloves off and strap the ever so clean [???] Poppy in pushchair

6. Rush over to Jamie's bed, who I fear is going to strangle himself as he is holding his throat so tight. I try quickly to find out if his throat is sore, difficulty in swallowing [risk of allergic reaction to the 14.18].

7. Nurses and Dr's come in and administer more drugs but Jamie continues fighting and screaming saying "Get it out" [he feels as though something is stuck]

8. Eventually he calms and says "I just want to cuddle my mummy!"

9. Phew...all over for now

10. Both children go off to sleep

So we don't know what tomorrow [Friday] will bring...it could be worse, better or the same...nobody knows....

Over and out
XXXXXXXXXX

Round 2 has started!

2010-05-13T17:54:00.000+02:00

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!

A quick update!

2010-05-12T21:25:00.000+02:00

This is just a really brief update as I am busy packing for the next chapter!!!

Jamie has recovered ok from the shingles - the scabs are still there and Jamie keeps trying to pick them. Our success with the accutane was shortlived as Jamie decided when back at home that he didn't want to swallow them. He has come up with a way of taking them which means that each capsule sits in the side of his mouth for at least 15 mins to get it all soft. Multiply this by 3 capsules twice a day and you can see how our time is taken up!! Ohh and lets throw in the mega mood swings and tantrums for good measure which start the moment he wakes up. We get a break of 10 -15 minutes between each outburst so this week has been so challenging. For the first time in all of this, I woke up one morning to the screaming and just wanted to hide! Things will improve :)

Anyway, well done Jamie as the accutane is definately going in. One of the side effects of oral chemo is dry lips and dry skin. He has that all over his face and bottom, bless him. He is shedding his skin like a snake but I am just happy to see this as it means he is getting the dosage!

John has been doing the walk of shame around the estate on bulk rubbish days!! The stuff people throw out because they can't be bothered to clean it etc..or because the bar b que is only a coal one!!!!!! So, I've nicknamed John Steptoe and Son and we have had a laugh about that!!!! We have also found a thrift shop, recomended to us which has loads of furniture. I picked up a wooden cabinet for the living room for $19.00!!!!

Although we have been at the house this week in Bucks County, we haven't really done much because of Jamie's mood swings. We took him to the park one evening and have been out for walks. The weather here has got much colder again. We went from having the air con on in the house to putting the heating back on within 24 hours!!!!

We met a lovely family when out and about the other day in Target. They were really engaging with Jamie and Poppy and so we got talking. They went away and came back with a bag full of toys and a little outfit for Poppy and said that they would look up Jamie's appeal on the internet! They were so kind and their children were so polite. Thank you - Jamie has taken the snake everywhere!!!!!

We did have some concerns over Jamie's health when he came out of hospital but at the clinic, bloods were taken and everything is fine. So here we are getting ready to start round 2!!! OMG this is going so fast that I haven't had chance to compartmentalise all the stuff that has gone on since we arrived here. We are nervous again as round 2 is different. We start of for 4 days with the normal antibody [ch14.18] that he had in round 1. We then come out of hospital for 2 days and go back in again for 5 days [I think] where Jamie will receive a combination of antibody with a hormone called IL2. These when mixed together make this a particularly difficult round with the pain issue. Having seen and dealt with Jamie during his extreme pain with the shingles [horrific] I think we are ready now for what could be around the corner. In true Jamie style he says "I'm going in for more treatment at CHOP to stop the baby blastoma cells growing!!"

Jamie is trying new foods, we are having a real push on nutrition at the moment and really encouraging him. Jamie even asked "If you eat lots of good foods like vegetables and potatoes and spinach will it help me get better??!!"

We are in awe of how knowledgeable Jamie is ~ I was worrying about him starting school and having to go back a year ~ maybe he doesn't need to!! He might find it better to be with children of his own age.

I think the highlight for Jamie this week has been seeing his Nanny and Grandad on Skype!! They arranged to use the computer at my sister's house and he was chatting away to them!! Poppy even took her first small tentative steps on Skype with Daddy holding her!!! She also has her first tooth so life carries on doesn't it?

Ok off now to continue packing and to take Jamie to his surprise for all the hard work in taking his medication ~ the Zoo. We have been given free tickets so know that Jamie is going to have a wonderful time there!!

Thank you for reading!!

Oooops!

2010-04-27T18:59:00.002+02:00

We have met some lovely families here and the staff are wonderful. One Dr even brought in a bouncy thing to hang off the door for Poppy and some toys! Everyone is so welcoming. It's also nice to have banter with the Higgins family, whose daughter is in for round 4. It's hard to think that back in December we were in contact with each other and discussing Philadelphia or New York. We wish Robyn Higgins all the best as she prepares herself for her FINAL round of antibodies in 3 weeks time. It's going to be a strange place here when they leave!

I gave Lisa [Robyn's mum] a lift back form the hospital the other night.None of us realised until we got to the RM House that Lisa didn't have one of her bags. She phoned security and sure enough, one black bag was waiting to be collected - had been found in the car park. I gave Lisa a lift back down to the hospital so that she could be reunited with her bag.

When she checked her bag it appears that someone [ie, ME] had reversed over her bag as her laptop was broken and Tommy's game boy. OOPS! For an 11 year old boy, Tommy, you took the news very well! Sincere apologies to Lisa and Tommy. The thing was, none of us had realised we had reversed over anything! I just liken it to my man on the bonnet episode in Germany!! Long story, nothing rude at all!

The ch14.18 Antibody Treatment - Round 1, Day 2

2010-04-27T18:56:00.001+02:00

All the same procedures as the day before but we all knew that although Jamie had tolerated the antibodies well, the next day could show more side effects. We were so relieved that the first day had gone well, we kind of forgot there was more to come! The second day saw Jamie in more discomfort, especially in the back and tummy and he used the morphine a bit more. He played in the morning in his room and by noon was sleeping. He slept on and off throughout the afternoon but the Drs and Nurses were in constantly monitoring and checking the vital signs. Any sign of a temperature needs to be dealt with quickly as the antibodies cause fever in some children. Jamie did spike a temperature by evening and the rash on his head was getting worse with blisters having formed and beginning to crust. The Drs kept looking at it and weren't convinced that it was Shingles because it had already crusted and was quite small. We had heard though that Shingles can occur after radiotherapy.

Jamie's heart rate was a little fast at times during the transfusion and then the cough appeared again. This time it occurred earlier in the day and he had several episodes of persistent coughing. By the evening one such episode lasted more than 40 minutes and was severe.

The Drs were called and they felt that this was an allergic reaction to the antibodies and decided to stop the infusion for 30 minutes and to administer morphine and Benadryl. Within minutes of the infusion stopping, the cough became much better and Jamie rested. They started the infusion again at a slower rate and Jamie coped well. They then turned it back to full flow and Jamie was able to complete that days infusion without too many other issues.

Days 3 and 4 were interesting and slightly panicky at times but I will explain more soon!

The ch14.18 Antibody Treatment - Round 1, Day 1

2010-04-27T18:54:00.001+02:00

Jamie's nurse was excellent at explaining everything that she was doing and going to be doing. She very quickly appreciated that this was a special moment for us and that we weren't a mad family who get excited about a bottle of medicine! Ok we are a mad family and we did get excited by the bottle of medicine!

At 10.00am, the nurse brought in the bottle that has cost so much money. I looked at it and saw those all important letters and numbers - ch14.18 and I could have cried.

I thought back to the stresses of the past few months and all the wonderful people we have met along the way. The wonderful charity nights that we attended and the generous donations people have made had all come together for this moment. Thousands of miles away from home, family and friends, Jamie was about to start what we HOPED would be, his final phase of treatment to eradicate this thing forever. Just over a year ago, as newly diagnosed, we had began a somewhat tentative 'look' at other options, with this being one that stuck in our minds.

As the infusion started I reminded Jamie what they were for. We think of it [the antibodies] as being like 'Iron Man' who flies around the body to find baby blastoma. When he finds them, he lands on top of them and blows them up! Jamie is happy with this very simplistic approach and totally understands what is going on.

He was shown the Mighty Morphine machine and with the help of his pain chart could tell us when he needed to press the button. The morphine was going in automatically but he could give it another push when needed.

Jamie became very sleepy quite quickly due to the Benadryl. The antibody infusion was going to take 10 hours, 12 hours in total with the final flush. Half way through the first day, I noticed a small rash appearing on the back of his head. Drs and nurses monitored this and then later on in the afternoon, Jamie began complaining of pain in his tummy and back. These are both likely side effects. He pushed the morphine button and controlled the pain really well.

By 8.15pm the infusion was complete and Jamie had got through the first day!! The Drs thought he had coped really well but we still had concerns about the rash which had now gone lumpy with open pores. Jamie also developed a cough towards the end of the infusion and at 11.00pm was coughing so much that he was sick. He had more morphine and Benadryl and went to sleep.

He had a relatively good night with a few coughing fits. This is also attributed to the antibody.

Building up to the big one!

2010-04-27T18:51:00.001+02:00

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 :)

Good riddance Cancer!

2010-04-20T16:56:00.000+02:00

Well the wait is finally over! For those of you who have not seen the facebook pages we had some fantastic news this week. Jamie's all over body scan revealed that there are NO hotspots! Jamie had to have a radioactive iodine injected into his IV line the day before the MIBG scan. This accumulates around any neuroblastoma cells thus showing up on the imagery as hotspots. In Jamie's case there was no take up of the iodine! This was the first result that we got back but we had an agonising 2 day wait to receive results from the bone marrow biopsy and aspirates.

During that time we came back to Bucks County [about an hour away] and at 10.00pm that night, realised that we had come away from CHOP without some important medication to protect Jamie's thyroid from the radioactive iodine! I telephoned our oncologist who happened to be on call that night and he assured us that to receive it the next day was not a problem. We went to bed feeling really cross with ourselves at the fact that we were going to have to make another trip to CHOP to collect the medication.

On Friday morning John was getting ready to head off without Jamie [surely not needed just to collect medication] when we had a call from the hospital asking us to bring Jamie in for a heart scan that afternoon. You can imagine what was going on in my head...was this their way of calling us in to discuss further results? Was there cancer in the bone marrow?

We called them back to put our minds at rest and they had the results ready from the bone marrow aspirates and biopsies. We could not believe the news when they told us that the bone marrow is free from cancer and there is no neuroblastoma left in the bones!! Me and Jamie were jumping up and down saying "Yeah, yeah, we've killed the angry cells!!" The Nurse Practioner could hear us all!!

The heart scan showed some tissue around the aeorta but his heart function is very good and they are not concerned!

As a treat for Jamie after having beaten this thing so far, we decided to take him on a 1920's locomotive in a town called New Hope. We saw some beautiful countryside on our drive there and when we arrived the town were having a medieval themed fair. Lots of people were dressed up, some more unusual than others!

Jamie enjoyed the train ride and had a great day but it was only on the way home that I thought how appropriate to have celebrated Jamie being cancer free by going to a town called New Hope! All this just before we all embark on the next phase of treatment!

Finally, for this update, we would like to express our thanks and gratitude to some special people who continue to work behind the scenes for Jamie's appeal. Wendy and Maxine work in the RAO's office in JHQ. They have been holding the Regimental account for Jamie's appeal and have done an amazing job. They have supported local fundraising events and Maxine is also organising a large music event to be held in Monchengladbach. From the Inglis family we say "Thank you!"

Maxine also translates our blog entries into German for us so that our local community [who have helped us so much] can also keep up to date with Jamie's progress. I know that this is really appreciated amongst our German community as one of Jamie's nurses from Dusseldorf commented on how great it was to have this page in German! Thanks Maxine!

Our last thanks for this page go to our blog administrators, Danni and Tristin who always give up their free time to post my lengthy updates! Danni gets excited about this as she says it's great being able to read all the news before anyone else!!!!!

More thanks are on their way in the next blog for more special people!

We had our training today for giving Jamie's injections known as GM -CSF. I gave Jamie his injection and it was the worst feeling ever but I did it. Jamie was very good with it but he did think Dr. Miller was coming out to America to give them to him!!!! I have to inject Jamie daily, leading up to the antibody treatment so I guess today has marked the beginning of the Immunotherapy. Getting very very edgy now about Thurs and how on earth Jamie is going to react to the antibodies. By the time the next update is on here we will be right in the middle of the first course. Keep thinking about Jamie, he really astounds us and deep down we know he can do this. We really do have New Hope...

Loads of Love

Vicky, John, Jamie and Poppy Inglis
XXXXXX

Waiting......

2010-04-15T08:04:00.002+02:00

Just waiting...and waiting...for Jamie to come out of diagnostics. He has been under GA now for over 2 hours. There is so much testing to be done and I hope he is not in any pain from the bone marrow aspirates.

Some of the team from radiology were there and Jamie beamed his great big smile at them! One of the nurses took him off in search of more of his nurse buddies!!! Jamie was so pleased to stay at the RM House and see all of his friends!! The Rogers family [Stella Rogers] had their film crew out, following the next phase of anitbody treatment and the reporter said she would film us and pass it back to BFBS, Yorkshire and WDR in Germany! It was a very short piece about the support we have here, i.e. meeting and sharing stuff with other families in the RM House. We weren't really prepared to do it so as it was done off the cuff, there will be a lot of editing needed!! I should be used to this by now but it is still weird!!!

We got totally lost driving from Bucks County to Philli yesterday and ended up having to go back over the bridge into New Jersey. We basically knew where we needed to be but the sign did not give us the option once we had come off the highway! Arghh!! The sign posting is totally inadequate for novices like ourselves. I think Jamie has heard all the expletives that exist now!!! Woops! Still we were only 10 mins late for our hospital appointment!!!

We should have the results from all the tests by Friday so all we can do is wait and hope that everything is fine and that there are no Neuroblastoma cells. As they say at the Children's Hospital of Philadelphia; Hope Lives Here... Lets hope that Jamie is still smiling :o)

Radiotherapy done - NEXT!

2010-04-12T20:15:00.002+02:00

What an exhausting week we have all had!! Firstly, Jamie has now finished his radiotherapy and has coped remarkably well!! On his last session the nurses decorated his recovery room with Power Ranger pictures, streamers and a huge helium balloon. They also gave him a Transformer gift which was so kind of them! I think Jamie's character is infectious because wherever we go he just charms everyone!

So on the last day of radiotherapy we handed back the hire car which was only for 2 weeks. Thank you again Flo for that. A fantastic organisation called 'Alex's Lemonade Stand' offer support to families such as ours and they have organised a lease car for us for the duration of our stay! We pay the insurance which we have managed to reduce from the original quote of 1900 dollars! We met the volunteers from Alex's Lemonade Stand as they were cooking one evening at the RM House. All of these wonderful organisations start from something tragic like losing a child so to meet Jay, Alex's father was quite something. We would like to express our thanks to this wonderful organisation and to 'Wynne' the car company that have leased this to us! You have made our life here much easier!'

Jamie's blood counts are stabilised but his weight had dropped again last week. He is still eating fairly well and is trying new foods daily. We returned to New Jersey to our host family for 2 nights to get everything packed and organised for our house move to Bucks County. We were sad to leave and Jamie was too but we know that we will see them again. I do worry that Jamie has met so many people that he gets attached to and then we move again but at least we are now in our 'own home!' We arrived in Warminster [in the country] on Thurs pm and again we received wonderful help from the 'Travis Manion Foundation.(www.TravisManion.com)' Travis was a US Marine Officer killed in action a couple of years ago and his parents have set the Foundation up to help others. Tina, one of the volunteers and her family were there to greet us and had got the house furnished with secondhand furniture for us! There was a baby play centre for Poppy, a beautiful cot, a bed for Jamie, dining table, coffee table, sofa. Not only that but they gathered kitchen essentials and had a box of cupboard ingredients for us! We were then presented with a gift card from the Foundation to get whatever else we needed to make this homely! There is great cheap store here which sells everything but is good quality so we have managed to make this look like our own home! At the end of our time, this will all go back to the Foundation to help another family :)

The house here is great and the neighbours great too. Within 5 minutes of being here we had already met Matt and his family who even cut the grass for us and came round with a huge box of toys for Jamie and Poppy!! Another lady who lives at the end walked in and handed over some money to get us started. They said that they all arrived with nothing and want to help us!!! It was a bit overwhelming but we really feel settled here and I now have the confidence to drive!! We managed to get the Internet and cable sorted, they company came out on a Sunday and were so efficient. That just sums up America really! Efficient in everything EXCEPT road and sidewalk maintenance in Philli!!!! The pot holes are more like craters!!! OH and whilst I'm at it, what about the traffic lights. I am programmed to stop on a red but some Americans don't seem to know this, either that or they colour blind!!

Poppy was a little unwell last week with a cold and cough. This is still waking her up in the night but through the day she is fine. She is a little adventure chick and is happy wherever she goes!! Jamie has enjoyed visits to the park again and was so thrilled when yesterday at the park, a little boy asked Jamie to play with him on the slides. Now that I see Jamie playing with others, I can see just how small he is compared to others of his age. His growth has certainly been affected by all the stuff that has happened to him but hey, his father is not exactly six foot is he??!!!

So what next? Tomorrow we are back in Philli at CHOP for the MIBG substance to be injected, ready for the scan on Weds. Wednesday is a big day where Jamie will have all the diagnostics done, the same as when he was first diagnosed. Bone marrow aspirates will be taken to see if there are any cancer cells and the MIBG scan will be done to see if there are any hotspots. Jamie's MIBG scan revealed no hotspots in December but he hasn't had bone marrow taken since May 2009. This one is an anxious one but hopefully Jamie is still in remission and the final documents can then be signed ready for the antibodies to start next week. We are also now planning to have Jamie's tumour sent to CHOP as they are doing a new test for ALK. If a tumour is shown to have this ALK then the team here in CHOP have recently developed a new treatment to target Neuroblastoma, should a child relapse. Again it will cost to have the test done and then to ship the tumour over but the other families have done this and we have nothing to lose. We are doing everything for our beautiful boy and will continue to do so until this is gone forever!

Off now to feed Poppy as she is hungry, as ever!!!!!

Love to you all and thanks again for reading!

Jamie's Easter

2010-04-12T19:39:00.002+02:00

Another week passed by so quickly! We have been getting into a routine now with the radiotherapy but it finishes on Tuesday!! Jamie's behaviour has been challenging again at times but the hospital are going to give us some much needed help! We started the play therapy to support Jamie in eventually being able to take the oral chemo. The tablets are in capsule form with a gel like substance which is sensitive to light so knowing how long it takes him to do his usual medication, opening it up is not an option!! Tomorrow we are going to use sprinkles and water and have a go at swallowing! Jamie enjoyed the play session in the hospital and was introduced to 'Winston' who had a broviac line and a mouth where Jamie could put the play dough tablets!! There was concern that the radiotherapy was lowering his hg level and that he would need a blood transfusion but on checking, the level had gone up by itself so well done Jamie! Jamie also had his first MacDonalds Cheeseburger this week! They told us that his appetite would be suppressed during radiotherapy but we have no signs of that yet, thank goodness. He still looks painfully thin but I guess the weight gain will not show until all this is over.

Jamie has found it difficult coming round from the anaesthesia this week and has an intense period of screaming whilst cuddling me. He says he likes the dizzy medicine and wants it all the time!!!! Slightly worrying!! We have been given our treatment plan for the next few weeks and it's quite something. We questioned the start date for antibodies but things have got delayed a bit because of having radiotherapy and we now have to wait a week before the diagnostics can start. Dr. Maris has assured us that we are still within the time frame, they do in fact give 110 days but on day 100 all the paperwork has to be signed and completed. They also told us that it is giving Jamie the chance to be as strong and as fit as he can before antibodies start. True, he is in the best health since last year which brings me on to my next point.

On Thursday, it was a year ago that we heard the word Neuroblastoma and that our beautiful son had this ugly cancer. This is not the forum to talk about my personal feelings but this last year has been so very hard on Jamie and everyone involved but when I look at him now I am stunned by how he is getting through this. A poignant moment on Saturday when Jamie went to the 'Jesus is Alive' party at Henry and Barbara's Church was when Jamie was dancing in the aisle with his balloon to a song with the words 'He is Alive.' All I could think about was Jamie and that he is ALIVE and at the moment is having fun. We know that the next phase of treatment is going to be so tough but this is nearly the end. We are almost there!

The Ronald McDonald House were given free tickets for a family to enjoy the Ice Hockey game on Friday night. We expressed an interest [as Daddy's sport is Field Hockey!] and were given VIP passes to join a suite upstairs and watch the Flyers play Canada!! Jamie loved it! There were hot dogs, snacks, desert trolley, ice cream and a bar in each suite which hosts about 20 people with great seats to watch the match! We all had a fabulous time and met some lovely people who own the suite. Some of them used to play for the Flyers back in the 70's!! Jamie got into the swing of it and cheered when the players were having punch ups!! He cheered for the Flyers and his first comment when he saw the suite, the rink and all the crowd in the arena?? "Wow, this is wicked!" I couldn't agree more. Thank you to Comcast who gave us the tickets and the people in the suit who were really friendly.

The weather has started to get warm again so on Thurs evening we went out for a pizza with another NB family. Normal things really do seem a treat at the moment! The Easter weekend was fabulous, Jamie took part in the Easter egg hunt at the RM House and then went to the Easter party in New Jersey in the afternoon. Our host family prepared a lovely Easter meal on Sunday and as it was so hot we went out to the park afterwards. They then took Jamie out for an ice cream in the evening so that John and I could get things packed ready to go back to the RM house for the next few sessions of Radiotherapy. We are moving around so much and living with each other in one room is hard work!

I ended up in the Emergency Room last night having swallowed a piece of hamburger the wrong way! It got stuck and I was in a lot of discomfort. They monitored my heart which was fine but my blood pressure seems to be high. I think we are going to have to slow down a bit now! I had to drink a wonderful cocktail to numb the oesophagus but today it is still quite sore. I feel so stupid and I only managed one bite of the burger!!! I am in no hurry to eat anything else at the moment!!

We also had news that our base quarter in Bucks County is available for us now. A charity have been working hard to help us furnish it so at least we will have our own space when needed. The house should be ready to move into by the end of the week. Jamie is at this moment, receiving his last session of radiotherapy!! The nurses have decorated his room and are preparing a little party for him!! They really are wonderful here. I have also just met another American family with Neuroblastoma and their son will start the antibody treatment at the same time as Jamie.

Oops have run out of time as packing the car to move to Bucks County. So much more has been happening but as soon as we can we will update again. One thing though...we really appreciate all the fundraising you are all still doing. The costs of this treatment are by no means fixed. For example - we have just found out that we will be coming back here for check ups every 3 months and God forbid, if Jamie were to relapse - we would have to come straight back to the USA then too!! We cannot express how grateful we are for your continued support. Thank you also to everyone who is helping us here especially to our host family, Henry and Barbara who are worth their weight in gold!

Love
The Inglis Family XXXX

Happy Easter!

2010-04-05T10:32:00.001+02:00

Happy Easter! It is so hot today! We have been in New Jersey for the weekend with our host family. We all went to the Easter Party at St. Mary's yesterday and enjoyed a wonderful meal today before walking to the park. We have now come back to cool down!!

Our new home!

2010-04-05T10:30:00.001+02:00

We checked out our new house near Willow Grove Naval Air Station last week after Jamie's early morning radiotherapy appointment. The trip was a bit emotional and we had a few close calls due to heavy traffic on the Freeway during the Easter break. We hope to take the house over this week. A fantastic organisation called the Travis Marion Foundation are going to furnish the house for us. It was really nice in a leafy suburb but was a long drive from the hospital. We only have a few days left on our hire car - we hope to get a permanent lease car soon.

Thanks to the Shortall family!

2010-03-31T15:06:00.001+02:00

On Friday evening at the Ronald Macdonald House, the Shortall family gave up their time to come and play with the children here. They brought in their Wii and Jamie had a brilliant time with their three sons. Their sons were in their teens and Jamie had great fun with them, hanging out with the older guys! We do have a photo of them altogether which we will send, so thank you to the Shortalls!!

2010-03-31T15:01:00.001+02:00

All is well, we have been staying in the Ronald Macdonald house for a week as Jamie needs to be at the hospital for 7.00am everyday for 2 1/2 weeks for radiotherapy!! He has had 5 out of 12 sessions and is put under general anaesthesia each time, bless him. The staff here are truly wonderful and one of the recovery nurses made us choc brownies for breakfast. Not very healthy but needed with the early get ups!!!

On Friday night Jamie was talking about his plans for the next day and said "We have to get up early for radio Robbie" [radiotherapy]. When he realised that we weren't going on a Saturday morning he got very upset!

We have met the two other families from the UK here for antibody treatment. Both have already started and have warned us that the first round is pretty traumatic but it gets better. I can not begin to explain how great it is to be with these families. It has made me realise that I am not going mad, this is in fact how other families are also having to cope with this thing. This certainly is no picnic in the park.

The level of care and attention to detail, holistically for each family is something we are not used to but this is what they do!! We have had training to flush the lines and will be having training to administer the injections :(. No way out of that one!! They also delivered a whole months supply of plasters, swabs, wipes, heparin flushes etc and phoned us the first weekend to make sure we were ok with the flushing and if we needed anyone to come over!

JAMIE HAS BEEN BRILLIANT HERE!! He has changed so much. He is healthy, putting on weight, hair is coming back on head and he has had eyelashes and eyebrows for a while. Best of all, he is eating well and ENJOYING LIFE!! He laughs and runs around, interacts with all the children and is a totally different boy, Becoming almost like my old Jamie. His behaviour has improved 10 fold. Jamie is thriving on this unusual situation that we have been forced into. He said that he doesn't want to go back to Germany!! After round 1 of antibodies I don't think he'll be saying that though!!!

All the staff have taken Jamie under their wing and adore him!! He is lapping all the attention!!

So last week was quite uneventful really except for Sunday when Jamie was in a lot of pain. One of his medicines had run out [he only has it when he has pain in the tummy area] and after using it up on Saturday night things still were not better on Sunday. We had to make a mad trip to New Jersey [30 mins away] where the new bottle of medicine was so within a few hours of taking this, the pain stoppped.

All I can say is thank goodness we were fortunate enough to have a hire car to go and get the medicine because otherwise we would have had to have paid for it!

Once Jamie was better, a friend had invited us to his appartment in central Philli to meet his family. His local Church community have been following Jamie's appeal before we arrived and wanted to see Jamie so we were greeted by a large group of Indonesians who were thrilled to meet Jamie and Poppy. Thanks Lindy, we enjoyed your hospitality and lovely meal.

This week the radiotherapy continues and then the diagnostics will begin prior to Immunotherapy treatment. These diagnostics are always an unpleasant and worrying time for everyone but we will let you know how Jamie gets on.

We have been here for 3 weeks now and it still seems strange that after a frantic time of fundraising and getting through high dose, we are actually here.

Please think about Jamie on 1st April as this marks the 1st anniversary since diagnosis. What a day that was but a year later, we have hope.

Thanks for reading this and Happy Easter to everyone!

The Inglis Family

2010-03-25T08:49:00.000+01:00

Jamie has now had 3 sessions of radiotherapy and is putting on weight at last!!! We are struggling with getting to the hospital for 7.00am every day but so far the sessions are going well. Everyone loves him here!

The most amazing thing has been meeting the 2 other British families whose children are having the same treatment, Robyn Higgins and Stella. To see and hear the same everyday stresses of living with Neuroblastoma makes me feel a little bit more normal! I think I needed this months ago, better than any counselling!

2010-03-24T13:13:00.000+01:00

Another hot day in New Jersey, Poppy looked so cute today in short sleeves, and bare legs. So chunky but gorgeous. Jamie made friends at the park and enjoyed his picnic, again!!!!! Same again for tomorrow before radiotherapy starts on Monday.

We are now in the Ronald McDonald house. It is amazing!!! Caterers come and cook at 6pm, there is a massive pantry where you just help yourself. The facilities are out of this world! Loads of play areas for the children. Got chatting to a family whose friends daughter has been diagnosed with cancer, aged 3 years, yep you've guessed, Neuroblastoma. She arrives at CHOP next week.

Week 2

2010-03-20T12:16:00.000+01:00

We have really enjoyed our second week here. The sun is out and we are feeling hot, hot, hot! It's going to change again next week but hey, Jamie and Poppy are loving it! We had an appointment with Dr. Maris on Wednesday and handed over the all important signed consent forms. What we are about to embark on with Jamie seems very scary as day by day Jamie is improving sooo much! His behaviour has really changed, his confidence and laughter, laughter which I have not heard for so long when he is playing!!

At the hospital Jamie helped celebrate St Patrick's day by searching for Shamrocks!! He was lead by the hand of a girl slightly older than him who seemed to take him under her wing. There were no arguments from Jamie!!! When it was time for Jamie to have his labs done [line cleaned, dressings changes, blood taken...] he was much calmer than the previous week. It was reassuring to hear some other poor kids scream in the other room. For once I was thinking "Thank goodness, its not Jamie!!" We met the dietitian for the Oncology ward and we have agreed to hold off with the feeding tube until next week. Jamie is likely to lose his appetite with the radiotherapy so will need nutrition anyway. We will see how he goes and when the time comes, they will insert the tube whilst he is under General for radiotherapy.

We also had a tour of the Oncology ward. I was speechless by the size of the children's rooms, there is even a sofa for the parents [although I think this is the parents bed!] The play room was beautiful and Jamie liked it so much that he thought he was staying! When we explained that he was in fact just visiting, he had the most almighty tantrum. I don't think we are going to have any issues with the talk about staying in hospital!!!

Over the next two weeks for radiotherapy, we are hoping to stay in the Ronald McDonald house, 15 mins away from CHOP. Our host family are wonderful but they live in New Jersey, a little drive from Phili. We have to be at CHOP for 7.30am everyday for two weeks and to get the children up and processed and in the car is a bit much and we can't be late!! Also we are hoping that Jamie will be well enough to play and join in the activities that they lay on and for us as parents we will get to meet other families, in particular, the Higgins family. Well done to their daughter Robyn, who is about to start her third round of antibodies! We are looking forward to meeting her and her mum Lisa.

We hope to return to New Jersey for the weekend. Jamie adores Barbara and Henry, our hosts and has been particularly intrigued with Henry's Porridge that he has each morning!! Barbara kindly offered to sit with Jamie last night, [Poppy was already in bed] so that John and I could go and get something to eat in the Diner. We ended up bringing half of it home as I am still not used to their portion sizes!!

Jamie talks about Dusseldorf and today said "I miss Dana [one of his German angels]. I think she has a sweet face!!" Such a special team of people and I know that Jamie really does miss them.

After what has been an unusual week for us in that as a family we have been able to do all the stuff that gets taken for granted, reality hits home AGAIN next week as we embark on the next phase. Lets hope that Jamie has few side effects and keeps well. He is going to need all his strength over the next coming months.

Thank you for taking the time to read this, as I don't often get the chance to update, when I do update the entries are lengthy!

Thank you to all of you that are still supporting the fundraising efforts, you know who you are and I can't possibly name everyone but just know that it is still helping!!!

Love to everyone from us all in the sun!!!

Food!

2010-03-16T08:44:00.000+01:00

Our lives are revolving around food at the moment as Jamie is wanting to eat sooooo, after a brisk walk in the rain we ended up in a warm cosy American diner with slices of pizza, chips and onion rings! Jamie said "I'm enjoying this!!" Surely this will pile on the pounds for him??? He ate healthily for breakfast, a bit of porridge, followed by toast and then choc ice cream!!!!!!

2010-03-14T20:30:00.001+01:00

Well we have moved to New Jersey, across the bridge and are staying in another beautiful house! This time we have the attic rooms upstairs and Jamie has a double bed to himself which he loves!!!
We are in the heart of the Cranberry and Blueberry growing region although any crops beginning to grow will probably be washed or blown away today, the weather is hideous! Really strong winds and torrential rain, come on Spring!!!

Okay, so this blog has been set up because of Jamie and the fact that he has Neuroblastoma. We learned today that 4 children this week, became angels and were taken away by this awful disease, including Sophie Atay. Honestly if it wasn't for us seeing her appeal on TV, we would not have pursued this for Jamie. So Sophie, thank you for inspiring us and know that you are helping Jamie.

Jamie's settings for radiotherapy went well yesterday. He charmed all the nurses immediately and enjoyed being pushed on his bed to the scan room ready for anaesthesia. No kidding when I say there were 10 people in the room, all attending to Jamie! Incredible! Jamie pushed the anaesthetic into his line and was out in seconds!!! No pre med, just instant knock out!!! Give us some please!!!

The whole thing took about 30 minutes and when he came back and started to wake, he was very angry! Still, he piled on the charm and after 30 mins we were free to go. He has a plastic pice of tubing stuck over his scar on his abdomen with sticky tabs coming off and then ink marks to show the area being radiated. It takes about a week for the images from this scan to be fed into another to provide 3D/4D images [I think] so that's why he doesn't start until a week Monday. You can see now, the desperate situation we were in to get him over here.

Then Mummy and Daddy went to med school, well not quite! Here in America, the broviac lines have to be flushed and cleaned daily as opposed to 3 times a week in Germany and who has to do this job? John and I. We had our training in the family suite so are ready to flush! When we were up there, Jamie said to me "So does this mean you will be my Nurse or my Mummy?" That set me off then!!!

In the family suite they have tea and coffee making facilities, free internet access a children's library and play area, brilliant!

The couple we are staying with kindly took us all out to an American Diner. The Diners were all impressed with Jamie as he walked in and wiped his feet on the doormat!!!!

Today, the weather is awful so we are chilling. A friend of the couple who is married to a police officer dropped by offering support. She has 3 children under the age of 5 and knows how difficult our situation is. However as we have had so much help its not as bad as we anticipated!

On The Move!

2010-03-11T19:27:00.007+01:00

We have decided to move out of the mansion as it is too far away from CHOP and over the next 3 weeks we are going to CHOP for radiotherapy everyday. We are going to be staying with a host family who live 20 mins from CHOP and she is a social worker there! I'm sure she can help me with Jamie!!!
We hope to then have our own place before the immunotherapy starts in April.

Tomorrow [Friday] Jamie has to be put under General Anaesthetic for a scan, ready for radiotherapy. I think they will be marking him up so he gets an ink tatoo which will stay with him. O'h well, if it means he is going to get better! We have to be there at 7.30am but that's ok as all of our body clocks are going a bit strange on us now!! By 9.00pm we are all in bed but awake at 6.00am. We are having the most sleep we have ever had since Jamie was diagnosed!!!

Off to the supermarket now, the food is fantastic here and cheap!! Fried Chicken last night with salad and rice - mmmmmmmm!!!!!

By the way, a little boy called Joshua Deller has been receiving treatment in New York, a slightly different form but antibody treatment nonetheless. If you read the updates on his site, (http://www.joshua-appeal.org/updates.php) it gives an insight into what is going to be happening with Jamie, including the radiotherapy.

Bye for now!!

CHOP

2010-03-11T08:02:00.007+01:00

OMG what a day!!! We went to CHOP!!! We set off for the train station and were amazed by how helpful people are! Two kids and pushchairs on trains is not fun but everywhere we went people were more than happy to help us!

To see the hospital in all its glory was breathtaking. It is absolutely huge! The building soared above us and was intimidating at first but once we got in and past security it was so serene. Music being played, lots of child friendly sculptures and activities. We met the oncology team who were fantastic. A detailed meeting with Dr Maris who is the head of the treatment programme left us feeling more positive than ever that this really is the right thing to do with Jamie. So specialist are they here, that they have their own Neuroblastoma nurse and Neuroblastoma social worker! I guess we'll be top of their list then as they saw how difficult Jamie can be!!! Just because the plasters that they use here are not the same as in Germany he went mental! We did warn them!

So we then went for lunch in the food court. What an experience! Any type of cuisine available and freshly cooked before your eyes. In case you got bored standing in the line then you could watch individual chefs on the monitors!! Jamie really enjoyed pesto pasta and said "I love this!"

The afternoon was just as busy with blood samples, cleaning the broviac and meeting the radiotherapy team. Jamie's platelets are now at 50,000 which means that they are going up on their own!!!! They are concerned about Jamie's weight so the nutrionalist will chat with us. He will no doubt need a feeding tube as he is losing weight. Another bit of good news - those that know us and Jamie will be aware of how difficult it has been to administer all the medication since completing high dose but we can stop it now!!!!!! Still needs the dreaded Kepinol though :(

The radiotherapy team will begin their testing on Friday with a general anaesthetic. Its quite a large area that needs radiotherapy but this will help prevent relapse in the primary site. We begin radiotherpay a week on Monday. 12 sessions under sedation as outpatient. The long term side effects are quite upsetting but what choice do we have? To give Jamie the best chance in life, he has to have it.

Jamie really enjoyed travelling on the train but has been upset as we didn't see Alvin the chipmunk today!!

So much has happened in the last few days that it's difficult to get our head around the fact that we are actually here but things will calm down soon I hope!!

Love to you all and a massive thank you for helping us get here!

Stateside

2010-03-09T19:23:00.004+01:00

We are here!!! We were met by a guy who is a friend of John's brother. He has networks with the church and there are loads of people rallying around to help us! He sent out an email to ask if anyone would put us up for a few days and he said within 20 mins he had a reply!!! At the moment we are staying with the Director of the University!! Basically we are in a leafy suburb in millionaire’s row!!! His house is truly amazing and we have an amazing room! The church network had managed to get a cot, baby bath, highchair, car seat, toys etc... Overwhelming!!!! So here we are stateside and I'm so glad we are here. Tomorrow we have an appointment with Dr Maris at CHOP!!

We also have the American military sorting us out with a house and again requests have been put out for furnishing it as it is unfurnished. It will be in a place called Willow Grove, about 50 mins drive from CHOP. They nickname it Bucks County as there is a lot of money here!! Oh and an amazing shopping mall apparently!!!

People are getting us a mobile [oops, I mean cell phone!] and they are trying to get us a vehicle for the whole time, like a lease car! All the insurance will be sorted!! So, I have just made an American coffee and earlier we saw a chipmunk in the garden. Jamie was beside himself as he loves Alvin and the Chipmunks!! He thinks that this is the real Alvin although how we are going to get it to sing, I do not know!!!!

The weather here is beautiful, they had loads of snow about 2 weeks ago but now it is mild and sunny and we are surrounded by beautiful trees with mansions nestled in amongst them. We could get used to this!!!

The journey here was made less stressful by the staff at Frankfurt. Basically we were escorted and transported everywhere; I think it took 40 mins from check in to get through control and security. They just waved us through!! We were first on the aircraft and had a row of seats behind as well that were kept free! If we had known this I would not have paid for Poppy's seat but we didn't know!! The staff couldn't do enough to help us! We had complimentary wine and they wouldn't let us pay for Jamie's snacks! The air steward let Jamie sit in her seat for landing and she had tears in her eyes as she welcomed Jamie to America!

Finally, we were allowed into the cockpit at the end of the flight!! I almost broke down then but held it together as Jamie got moody and brought me back to reality!!! The air steward then fast tracked us through immigration so it was quite nice to see everyone else queuing and we just walked past!!!!!

Not too jet lagged considering we left our house at 6.00 am having had 2 hours sleep and arrived at the house about 10.00pm CET! Went to bed at 9.30pm [3.30am in Germany] and slept through until 5.00am. Both children are having a morning rest, it's 10.00am here and Jamie has already said "I like it here, I don't want to go home. We are not going home are we?!!" Hopefully his behaviour will improve now!!!

I can't believe we are here, everyone is really friendly, even the staff at the airport in Philly!! So for those of you who are thinking of visiting Philly, don't hesitate, it's fantastic!!!!!!!!!!!!!!!!!!! New York is only a 3 hour drive away and Boston is being recommended all the time!!

We will find out tomorrow exactly when Jamie will start radiotherapy and the hospital is highly thought of here. Will let you know how it all goes!!!

All our love

We Made It!

2010-03-09T08:23:00.001+01:00

We are in Philly!!!!!

Some amazing people have helped us in the few hours that we have been here. Airport stuff went well, they escorted us through everywhere. No queuing, rides on a buggy etc.. Flight was good, we were well looked after, complimentary wine and snacks for Jamie. Hard work though with Jamie and Poppy.

Off to bed Now!!!!!

Philadelphia, Here we come.....,

2010-03-09T08:20:00.004+01:00

After 12 weeks of fundraising, the kindness of strangers (many of whom are now friends) and some gruelling treatment for Jamie, the Inglis family left for Philadelphia on Monday 7th March 2010..........

2010-01-20T22:55:00.001+01:00

Jamie Inglis - The Story So Far

Jamie (age 4) was diagnosed with an abdominal tumor on Apr 1st as he had suddenly become unwell in nursery. I was in the UK on an inspection in Catterick. He had no obvious symptoms of any illness before other that low level symptom. My wife called me and within 4 hours the Army Compassionate cell had arranged flights to Dusseldorf Uni Klinic. After several days they diagnosed Neuroblastoma stage 4 and found out that it was MYCN amplified (aggressive form) the cancer had infiltrated the bone marrow as well. His prognosis was given to be 20-30% survival so we were devastated. The MIGB scan revealed that it had spread from his kidney into the femurs of both legs and around the orbital in his eye and some of the lymph nodes.

He started chemo after all the tests for high risk Neuroblastoma. He was very sick at first and we were in hospital for 7 weeks without break. The tumor was so big that it started to affect his breathing and he would not eat or drink or hardly move in his bed. After a month or so he started to improve a little and gain some mobility with physio. After several blocks of chemo he started to respond well to the treatment. After block 6 he became very ill and developed pneumonia and he suffered a sepsis which required ventilation on an ICU for two weeks. For 24 hours his situation was very critical and we were very close to losing him but he managed to pull through. Two weeks after this incident he received his Op to remove the affected kidney and tumor which was carried out successfully however there are still residual tumor cells remaining. He has now had 7 of 8 blocks of chemo and will then receive high dose to complete his treatment.

During his treatment I was posted from Herford to Monchengladbach were my wife works as a teacher at JHQ in Rhine Military Complex so we could be together as a family and also in closer proximity to where Jamie was receiving his treatment in Dusseldorf. The army welfare, local community and friends have been very supportive and the military health service (British Forces Germany Health Service) has helped us right from the outset. The hospital facilities and staff are also fantastic. I have been given time off work since April to look after Jamie as we had a baby girl in Jul and my wife (Vicky) could not possibly manage both. I would have probably deployed to Afghanistan had my son not been ill.

Even though Jamie has responded well to the initial treatment the chances of his cancer relapsing over the next year is very high (40% of cases). The relapse is normally caused by microscopic cells which have survived the chemo and is referred to as minimal residual disease (MRD). Unfortunately when the children relapse the prognosis for survival is reduced significantly and the chance of a cure is very small. A recent antibody trial in the States has been very successful as it targets the MRD and improves the chances of survival by 20%. This treatment may well become a standard regime in the future, however, Jamie does not have time as he will require this treatment within 90 days of completing his high dose which he is due to complete by Feb 2010.

A potential life saving treatment is available at the Memorial Sloan- Kettering Cancer Centre in New York – this treatment however, doesn’t come cheap. We need to raise US$500,000 before Jamie can be given the potentially life-saving therapy.

Please help our son and Poppy's big brother, Jamie.