3rd day of chemo

Dylan started chemo 2 days ago on Tuesday 15th Feb. He is having Vincristine only on day 1, Topotecan for 30 minutes for 4 days and Cyclophosphamide for 6 hours for 2 days. This round totals four days. It’s hard to watch him try and recover from major surgery he had 6 days prior, and then go straight into the awful effects of chemo. He has not vomited yet but he is very nauseous an has a very heightened sense of smell. He can smell the strangest things and it is upsetting him. They have a great range of anti nausea medication here, and Dylan has had 3 different types so far, that are working very well. Late Tuesday night Dylan developed a fever of 38.4, so the doctor had us go down for a chest x-ray at 2am! He thought he could hear some fluid on the lungs, but the x-ray came back extremely clear and it showed Dylan’s lungs were perfect. Then this morning they came in and told me that a radiologist expert looked at the x-ray and they have said in their opinion, that Dylan now has pneumonia. So Dylan is now on 3 antibiotics, one for the pneumonia, one for the gastric button (feeding tube) site and one for his diarrhea. They took blood cultures also. His temperature went away for most of yesterday but went back up to 38.5 last night and has remained this morning. The worst thing at the moment is the diarrhea, it’s explosive and I have resorted to putting nappies on Dylan, much to his disgust. Even that doesn’t hold it, I have had to do complete bed changes at least 8 times in the past 12 hours. They have taken poo cultures but those results take 5 days to grow. They have to treat Dylan as infectious now so the nurses are all wearing gowns and gloves when they enter the room. Dylan also has his own portable toilet too, but the poor thing cannot control himself enough to make it, to use. Dr Modak did say that one of the common side effects of Topotecan is diarrhea, so I think with the chemo plus the surgery, not eating and antibiotics, his body has just decided to let it all out. On Tuesday morning Dylan has a small amount of food, the first thing for 7 days, but has not eaten since, and he most likely won’t for the next few weeks during the chemo effects. We started his feeds last night also, he is on Pediasure which only has 200 calories per serve compared to the 360 calories per serve back in Australia. I have called for the nutritionalist because I am afraid Dylan will loose too much weight and I need a stronger formula. Dylan is now 16.1kg and loosing roughly half a kilo a day which is a huge amount when you don’t weigh very much in the first place. I can see his ribs and his bottom cheeks are totally sunken and flat. Dylan is not depressed but is a little miserable, which is totally understandable. He still has his sense of humor but is not as chatty and playful as he normally is. His pain is getting better each day and the morphine was taken off yesterday. He still has moments of sweeping pain, particularly in regards to his new gastric button. As the old gastric peg was so big, the hole for the new one is oversize and we have to wait until it heals up a bit. The fever may even be due to the peg, because it is red and weeping and his button moves in and out very freely, which irritates it more. I am bathing it and redressing it several times a day and started putting antibiotic cream on it this morning. I am not sure when we will get to go back to McDonald House, I assume not until the fevers etc are under control. When we do finally get back, we will then go back to MSKCC every second day for blood tests. Within a week we will be back for blood transfusions and possible fevers as effects from the chemo start to drop his blood counts. Once his blood counts rise again, he will be hit with another round of the same chemo, then we will have more scans and tests. Depending on those results, we may then be able to jump straight into the 3F8 monoclonal treatment as planned. This is the result Dr Modak is hoping for. Dylan is keen to get back to McDonald House, he asks almost everyday, when can we go back to Macca House.