Nolan’s second round of 2-CdA (Cladribine) (Nov. 3-7) went well.
November 3 - Monday was a long day again and this appears the norm for the first day of the week. The day goes like this: get to clinic, wait in line for registration, weigh and measure Nolan (to calculate the dose of chemo), put on the EMLA patch (numbs the skin so Nolan does not feel the big butterfly needle), get the port accessed, draw blood work, wait for blood work, if blood counts are good then order chemo, wait for pharmacy to prepare Cladribine dose, hook Nolan up to IV and take vitals, give Ondansetron (to prevent nausea) and flush with saline, when Cladribine arrives hook up and start infusion for 2+ hours, flush IV lines with saline, unhook IV, push heparin into the port (to prevent clotting in the line), wrap the sausage (the needle that accesses the port stays in all week and must be wrapped in gauze when not in use so it stays clean) and finally take Nolan’s vitals again. Done. We can go home!
November 4 - Tuesday was clinic day, so, while we were waiting for Nolan to get hooked up to the IV we met with both the Pediatrician and the Oncologist regarding Nolan’s rash from the previous week which was now improving. The suspected cause of the rash is an allergic reaction to the antibiotic ‘Septra’. Septra is given to persons with suppressed immune systems to prevent (prophylactic) Pneumosystis pneumonia (PCP). There appeared to be two concerns. First, we cannot retry the Septra for allergic reaction due to the possibility of Stevens-Johnson syndrome, a rare but very serious reaction that can occur with this antibiotic. Second, Nolan needs to ‘tolerate’ the Septra because it is the most effective treatment for treating Pneumosystis pneumonia (PCP). The outcome is: 1. we need to start Nolan on a different prophylactic, likely Pentamidine, because the Cladribine severely lowers the number of T-cells (which is the body’s big defence against PCP); and 2. a referral to the Immunology Clinic to see if they can test for an allergy to Septra and, or ‘desensitize’ Nolan. Unfortunately, Immunology is a very popular clinic and this could be a long wait (I was told up to a year). We could use some extra prayers that Nolan stays healthy over the next while when all of this is being sorted out.
November 5 – On Wednesday we spent some wonderful time with the Child Life Specialist, Erin. A wonderful Volunteer (Betty) had suggested to Erin that Nolan might enjoy her ‘Medical Play’, well … he LOVED it! Nolan received a little cloth doll (which he drew the face on and personalized himself) and a bag of supplies necessary for accessing the doll’s port and giving the ‘special’ medicine. Nolan touched us both when he repeatedly said “Good doll, you are such a BRAVE doll”.
November 6,7 – Thursday and Friday there was more medical play with the doll. Friday morning Nolan had tones of energy. At one point, while we waited for hook-up in daycare, Nolan was running around in circles. A boy of about two years noticed, he was smiling then giggling at Nolan. Nolan proceeded to run circles around this boy who continued to giggle. Nolan stopped, showed the boy his ‘sausage’ (port needle all wrapped up), and then ran around some more, with more giggling of course. I was happy to see all that energy put a smile on another face!
Some complaints about a sore lower back which I brought to the nurses attention, but after checking Nolan out she didn’t think it was anything to be concerned about. The ‘rash’ from last week, continued to improve this week, but the skin on Nolan’s hands has started to peel off! Nolan was happy when Friday came for two reasons. First, this was a long week for him and he was looking forward to getting the needle out of his port and saying goodbye to the sausage. Second, Nolan now knows Friday is the day before the ‘weekend’, a time when he will get to spend more time with his Dad and brother.
November 8 – Saturday morning and Nolan has another rash. Red spots just on the tops of his feet, but it does not bother him and does not worsen over the weekend. I make a note to talk to the pediatrician at clinic on Tuesday when we go for Nolan’s blood work.
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