Share my story

Friday, August 20, 2010

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 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 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] 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 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.

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


Heather said...

Amazing, what he and you have been through! Gorgeous pictures that made me cry.....

Anonymous said...

congrats jamie for being a superstar!!!

what a nice entry to cap it all off. it is amazing to see what Jamie and your entire family has gone through. i wish you all the best and it has been an honor meeting/knowing you. good luck and have a safe trip back to the UK!


Anonymous said...

Well done Clan Inglis. Much, much, love to you. You are all inspirational. Flo xxx