Keira was an absolute trooper for her first cycle of treatment this week. On Tuesday she endured getting an IV at 7:00am, followed up by blood draws and 5+ hours of IVIG treatment and a flush. This ended at 2:30pm and we promptly went to her Occupational Therapist (OT) for about another 1.5 hours of OT evaluation, testing her fine motor and developmental skills. The OT was quite impressed with Keira's abilities despite having regressed in her fine motor skills and strength due to the OMA.
On Wednesday, the marathon day, we were back at LPCH bright and early at 7:00am and started her second IVIG treatment around 7:30. This ran again for 5+ hours followed by a flush, then ~1 hour of Cyclophosphamide, followed by 3 hours of hydration. We didn't leave the hospital until 5:30pm. We were absolutely impressed with Keira's mood and patience all day. Sitting in bed attached to an IV for 10 hours would drive anyone crazy, let alone an 18-month old. I was also personally impressed with Crystal's mood and patience as well, given that she spent most all day on the hospital bed keeping Keira company. We had Poornima and Abhi stop by and bring us lunch, and then Aunt Jamie hobbled on by in the afternoon with some coffee, and finally Uncle Raj paid us a visit later in the day. The visitors really helped break up the day and allowed our little social butterfly to show everyone all of her new tricks first hand (like saying "Isotope", "Immunoglobulin", and yes even Jamie heard her say "Cyclophosphamide").
We're back at home today recovering from the two days of intensive treatments. There are some notable side-effects that we're right now waiting to see if/how they surface over the next couple of days. This should give us a good understanding as to how Keira will react to the drug treatment going forward so we can better plan and manage the side-effects, but for now, given that she just had her first treatment, it's a wait-and-see game. The IVIG can cause headaches, fatigue and irritability, and the Cyclophosphamide can cause nausea, stomach upset, and hair loss/thinning.
Going forward, we'll spend 1 day a month for a clinic visit with her doctor (evaluating her motor, cognitive, and developmental skills) followed by a 10 hour day of IVIG + Cyclophosphamide. Keira will have to have a blood draw on a weekly basis to monitor her blood cell counts, but luckily there is a lab only blocks from our house in SF, and this will only require a pin-prick, not a vein poke. Furthermore, we'll likely be on a bi-monthly Occupational Therapy cycle, but potentially a bi-weekly Physical Therapy (PT) cycle to help with Keira's loss of gross motor skills like walking and balance. Our first PT evaluation is scheduled for next Wednesday.
Finally, Keira can get a few days of rest before her next appointment, and a full month before seeing another IV.