Almost an entire week at home. We are settling in nicely, and enjoying this precious time together. Mae has been having a lot of fun in her new backyard, and Phoebe is making more progress as each day passes. She has now mastered going from sitting up to her tummy, and today she wiggled her way backwards on the carpet in search of her beloved soother. She has tasted various milkshake and smoothie concoctions, and although she will only take a few sips at at time, it is wonderful progress. Thicker liquids seems to be more comfortable for her to swallow, so we will continue to try and find things that she likes.
Phoebe is adjusting to the heat, thanks to a central air conditioning unit that was installed earlier this week. Her concerned Grandpa called in a favour in the middle of this very long and intense heat wave, and although i'm sure it is the busiest time of the year for those in the business of bringing people like us cool relief, our wonderful AC arrived and was installed within hours of the phone call for help. Once again, we were reminded that the world is full of some very, very lovely people.
We have had two visits to the medical day unit at CHEO. Each time we were quickly ushered into an isolation room, the door firmly closed, and Phoebe's blood was drawn and tested. Her counts have dropped a bit, which is always stressful, but we are hoping that it is related to the intrathecal chemo that she received last week and that her counts will start to climb up again soon. The doctors say that it is very rare and unlikely for chemo given in the spine to affect the peripheral blood, but Phoebe's counts have now dropped shortly after both rounds of intrathecal chemo that she has received post transplant. There is very little data about infant Leukemia, and not a lot is known about the effects of intrathecal chemo post transplant. So much so, that each hospital seems to do things differently. Phoebe will receive 6 lumbar punctures with chemotherapy post transplant, but other infants might have radiation instead, or more, less, or no lumbar punctures. Each case and each infant is very different, but it also seems to depend on the doctor who is making the decisions. In any case, we have learned that nothing is too rare or unlikely for Phoebe and so we are hoping that this is the cause of the drop in counts, or that it is simply what Phoebe's new bone marrow is doing right now. One of the chemotherapies that Phoebe receives in her spine, methotrexate, has always given us problems. She is very sensitive to it, and even in tiny doses it has given her mouth sores and nausea. She has one mouth sore that we can see right now and as for the drop in counts, I blame methotrexate.
We are returning to the clinic on Monday to test Phoebe's blood again, and we are hoping for more of the steadily climbing blood counts that we have been happily getting used to. As for Phoebe, the stress is not getting her down. Tonight after a short cat nap, she woke up with a big smile, ready to play. She happily munched on an arrowroot cookie, looking very proud of herself for doing so, and babbled and bopped until she was ready to settle down for the night. I like to think she was telling me not to worry.
She is now cool and comfortable and sleeping peacefully in her own little bed.