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.
1 comment:
super post chaps xx
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