Well it's Tuesday night and Jon is asleep in bed. We finally got to give him his chemotherapy treatment. We had talked to Dr. G at Duke and he agreed that we should go ahead and give Jon Jon the Avastin treatment. We had to wait until the last minute yesterday to find out if we were going to go to Children's and get it. Last Thursady he was supposed to start the chemo, but on Thursday his Doctor called us and said his blood culture came back "positive" for some type of infection so we had to make a trip down to Children's for Vancomycin IV. We were there from about 6 p.m. until about midnight. As with anyone that goes through an illness like this, we are becoming very familiar with that place. Anyway, we are now giving Jon Jon the antibiotic IV every 8 hrs until this coming Saturday. It wasn't too tough for me to figure out the pump and Anne has also become very proficient at taking care of his med-port and operating the IV pump. We figure she was a nurse in one of her past lives.
Monday morning came and they gave us the green light for the Avastin treatment. We arrived there around noon and got settled in on thhe 8th floor and the doctors came in to evaluate him for his treatment. As luck would have it, he had a "little crackle" in his upper right lung and they were concerned he may have been starting a pneumonia. We've been very worried about that happening because he has such difficulty swallowing somethings. They did a chest x-ray(2 more hours of waiting) and it was clear so they said go aherad with the treatment.
His first treatment was a 50 ml bag over 90 mins and then they would watch him for an hour for any reaction and send him home. The first treatment is supposed to go in slowly so if he does start to have any reaction they can shut it down and deal with it. So the nurse hooked him up and it began running in. About a 30 mins later the pump started beeping and the bag was empty. The nurse mis-programmed the chemo and it went in 1/3 of the time it was supposed to. She knew it was a 90 minute dose, but she put in the settings backwards. Thank God he didn't have any adverse reaction and he still has not as of this point. Today he was a little punky and more tired than usual. He couldn't even stand or walk on his own and he goes about 80 lbs. so he is a handful to maneuver aroung. Thank God for my employer and co-workers covering my shifts, and Anne running her own business, we are able to be here 24/7 with him to do whatever he needs.
Claire has been a very patient angel too. Dave and Jane across the street have 3 boys, 2 of them Anne has mentioned, Jamie and Jake. They are Claire's pals and she plays with all of the time. They have been wonderful in taking Claire over to their house to play and be entertained so we can focus on doing things for Jon that we need to do. It also gives us a minute to sit and relax when we can.
That is about all for now. We'll try to keep everyone updated as to Jon's progress on this new treatment regmien as much as we can. Please keep the positive thoughts and prayers coming for him. We need them now more than ever! Thank You!
Jon, Anne, Jon Jon and Claire