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

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

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

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

XXXX

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!!!!!

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!!!