Dylan was admitted today for his 4th round of chemo. Doxorubicin, Vincristine and Cyclophosphamide. The results are still not back yet from Thursday’s bone marrow aspirate. Bloods were: Hemoglobin 107, Platelets 139, White blood cells 2.2, Neutrophils 1.4. The doctor’s say this is o.k for chemo to go ahead, but I feel they are still too low. For those unfamiliar with this, when Dylan commenced his first chemo in July his platelets were 506 (this makes blood clot) White blood cells 9.0 (this is the immune system) and Neutrophils were 6.23 (this is also the immune system) After this chemo all his bloods will go down and he will become neutropenic (No immune system at all) He will need blood and Platelets transfusions also. Chemo also wipes out any childhood immunizations which makes Dylan vulnerable to all disease and can be life threatening when he is neutropenic. Dylan ate well today and was in good spirits. Chemo started at about 1:30pm in day clinic while we waited for a bed. The Vincristine was administered first, which is a syringe full, pushed into his hickman line. The side effects he gets from this chemo is foot drop, which means he is unable to walk the following day and the other symptom is droopy eye, one of his eyelids droops after a week or two of this treatment, but last time it recovered itself after a few weeks. First Dylan was given a dose of Ondansetron, to help with the nausea, then came an hour of IV Doxorubicin, this is a red coloured chemo that hooks up like a drip. The side effect from this is nausea, vomiting and terrible ulceration of the mouth and gut, so we have started the mouth care regime which includes a revolting tasting mouth rinse and oral Nilstat. Then came an hour of IV Cyclophosphamide, this is a clear chemo, again hooked up like a drip. This is the one Dylan hates the most, it causes an awful burning sensation in his nose that he just cannot cope with and unfortunately there seems to be nothing the doctors can do to relieve this symptom. Dylan calls this “Fizzy nose” About 30mins into the Cyclo it started, he said “my nose is fizzy which means the chemo is poisoning my brain” I told Dylan it was poisoning the lump and not his brain.
We then got a bed in on the 6th floor 5:30pm and to our delight we got an isolation room in the “Bat cave”. This is a transplant room and we were very privileged to get it. We have our own bathroom and can have the TV as loud as we want! We attempted his feeds via his peg but 45 mins later at about 9:30pm he started vomiting and fell asleep by 11pm. He woke again at 1am, screaming and crying. At first I thought it was a night terror, but then I figured out it was the fizzy nose again. It lasted two hours and during this he said to me for the first time “I don’t want chemo anymore” I felt so helpless. In the past we have tried Vick’s, raising the bed and warm face washers but to no avail. The nurse gave him some Panadol and finally he fell asleep. Tomorrow he will have more Cyclo. I met another new NB family today, Ruby age 20 mths, they are still waiting for results to see what stage she is at, but has already had her hickman put in, ready to start her first chemo any day now. This makes 5 other families I have met and 2 others that I know about but have not met…that makes 8 families since July this year, including us.