September 20, 1999 - Andy was admitted for chemo again. We talked a little bit about what is going to happen when Andy finishes his treament. He will have a complete workup - brain MRI, skeletal survey, bone scan, abdominal and chest CT scan- 3 weeks after completing his treatment. The oncologist recommended we leave the mediport in for 3 months after these tests. He said 'you don't want to think about but the most likely time for a relapse would be in these first 3 months'. He's right I don't want to think about it. I mentioned that Andy seemed to be dragging his left foot a little bit when he walks. The oncologist said since it just started it's hard to tell what might be causing it. When Andy was admitted, the pediatrician (who was a resident) watched him walk. She said 'I don't know what that is.' I suggested it might be due to the vincristine. She said 'no, kids with vincristine problems have pain'. Andy is not having any pain, he just walks a little funny. This worries me. If it's not the vincristine than what is it?
September 27, 1999 - We went to the clinic for counts. His counts were good but his walking problem is worse and much more obvious. The oncologist said it looks like foot drop from vincristine. I mentioned what the ped in the hospital said about vincristine causing pain. He said vincristine can cause pain but it can also cause 'foot drop' without pain. Andy only gets 1 more dose of vincristine so it's not something to worry about right now.
October 11, 1999 - We went to the clinic for pre-admission. They checked Andy's blood counts and his ANC was only 600. It needs to be 1000 to get chemo. So we had our first delay. It was surprising because his counts had been pretty good the week before. We still went over to the hospital to get an echocardiogram. Everything is normal with his heart.
October 18, 1999 - We went to the clinic for pre-admission and this time all Andy's counts were normal. He even grew a little layer of peach fuzz on his head. When we got to the hospital Andy hit himself in the mouth with the handle of a wagon. He cut his lip and bled a lot. When the nurse started the cytoxan, Andy fell sound asleep. When the nurse came in and started the VP-16, Andy woke up, turned very red and started to choke and gag. The nurse stopped the infusion pump and called the doctor. Within seconds of stopping the infusion Andy stopped choking. Gradually his color returned to normal. They assume it was a reaction to the VP-16 even though he had it many times before. The oncologist said there were 2 possible causes. The first possibility is that the VP-16 infused too quickly. They decided to run cultures to make sure there is no infection in his port. The other possibility is that he just had a spontaneous allergic reaction. They decided to substitute etoposide phos for the last 3 doses. If he reacts to the substitute then they will just skip the last 3 doses.
October 19, 1999 -Andy got a chest x-ray and abdominal ultrasound and they are all clear. When we got back to the room they told us the blood cultures they ran were positive for some kind of bacteria. They didn't think Andy's port malfunctioned but they put him on vancomycin. They started the vancomycin to be infused over an hour. After about a half hour Andy's head and face turned very red. They all came in to examine him again. This time it was a reaction to the vancomycin. They gave him benedryl and infuse the vanco over 2 hours. I guess I can be thankful the whole six months wasn't like this. I am also thankful because the scans are still clear and if we get through this week we only have 1 treatment left.
October 22, 1999 - They were going to do Andy's chemo in the afternoon so we could sleep at home tonight. They started the chemo and after about a half hour I noticed that Andy's line was full of blood. Apparently a bag of fluid connected to his line was not clamped off. When the bag was empty Andy's blood got sucked into the line. They put a new bag of fluid on and it flushed his blood back in. I will be very glad when this stay is over. As we were getting ready to go home they came in and told us all Andy's cultures after the first one were negative. They think the first one was probably due to contaminent so they stopped the vanco. Then they told us they found microscopic blood in Andy's diaper and we had to stay the night.
October 23, 1999 -There was no blood in the 'clean catch' urine sample and we finally went home. Andy was very active and playful all day. I started to rock him before putting him to bed and he threw up. I tried to give him zofran but he wouldn't take it . He vomited and had diarrhea all night.
October 24, 1999 - Andy is still vomiting. Around 2 pm I called the oncologist and they told me to take him to the ER because he isn't wetting his diapers. We went to the ER and they examined him. They ran more cultures and took an x-ray of his abdomen. They can't find any cause. We guess it is a virus. He didn't have a fever so he wasn't admitted. I am glad about that.
October 25, 1999 - Andy did not vomit all night and has his appetite back. I started have the same symptoms he had. That pretty much confirms the virus diagnosis.
October 29, 1999 - We went to the clinic for counts and they are on their way back up. We got through this cycle without a transfusion.