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!!!!!