Yesterday morning, after meeting with Phoebe's doctor and seeing that her white cell count had only climbed up 3 points to 40, we decided to wait - we desperately wanted the study drug to prove to be as magical and promising as it had in the beginning and our doctors remained hopeful in that possibility. By mid afternoon, her white count had climbed to 65, and it became painfully clear that the study drug, although it appeared to work very well in the beginning was not successful. We quickly moved on to Plan B and started Phoebe on chemotherapy in order to bring her white count down and help to ease some of the symptoms of her Leukemia. Phoebe is quite asymptomatic, her only trouble being her very large belly - made large by a growing liver and spleen that is most likely also full of Leukemia cells. Because her belly is so big it is pushing up on her lungs and her breathing is heavy and laboured. She is still getting enough oxygen and able to play and be her one year old self, but it seems that she is working harder. We hope that the chemotherapy will help to relieve some of this burden and allow Phoebe to be more comfortable.
We are meeting
with Phoebe's primary oncologist on Monday. He is a wonderful doctor,
full of knowledge, hope and optimism. A main focus of many of his is
drug development and he is working to bring additional treatment
options, new drugs and clinical trials to Canada. We are anxious to
speak with him and to learn more about next steps and to hear his ideas
on what the best treatment is. To treat such an early relapse seems to
be fairly rare and at times we feel like we are in uncharted territory.
No one seems to know how Phoebe's bone marrow will handle aggressive
chemotherapy and if it will recover. To prepare for what will most
likely follow a remission, we have also spoken with Phoebe's transplant
physician who agrees that it is worthwhile to try to treat Phoebe's
cancer but wants a second transplant to be innovative and novel as
standard treatment was not successful. We all agree that all things
related to treatment must be taken one day at a time with a first goal
of getting Phoebe safely through a re-induction of chemotherapy and her
cancer back in remission.
Today, after one dose of chemotherapy, Phoebe's white cell count
has fallen to 23. It is a step in the right direction and we are anxious to take many more steps this way. As for Phoebe she is handling things
very well. One of the drugs she has started is a steroid, which comes
with many short term side effects. Among them, is an increased
appetite. As I write this, after polishing off nearly half of an
avocado, Phoebe is happily munching on a banana. The steroid also
affects Phoebe's mood and behaviours as it would a bigger person too.
Phoebe becomes somewhat of a super baby. She plays hard - lifting her
toys above her head and then crashing them back down on to the mat, all
the while hollering in what can only be described as a tarzan type of way, babbling and squealing. She is restless, very excitable and harder to settle down for a nap, but still
very joyful. Before all of this, I could never have imagined giving
my baby steroids, but they like many other things we have encountered on
this journey, are a necessary evil. They work to fight against the
cancer, and that - is a good thing.