It seems like a lot has happened since I sent out the last update in early December! I am realizing that January came and went all too quickly for us - and am feeling by the look of the calendar on our fridge, that February is going to do the same. Evie has now had 12 treatments! This means that she has officially completed what they call the "Induction Chemo" (which in her case was a cycle of 10 doses of chemo + 2 weeks rest) and now begins the "Maintenance" (which is a cycle of 5 doses of chemo + 1 week rest). As per her treatment protocol, she will be cycling through the Maintenance chemo routine for the remainder of the year. In the past month however Evie has developed an allergic reaction to one of the two chemo drugs. As a result, she is now required to be given pre-meds prior to her treatment to avoid the reaction. This ultimately means more medicine for Evie - and a very tired little girl on Fridays.
Over the holidays we also noticed that Evelyn was tilting her head and squinting slightly. We brought up our concerns with her team of doctors and they arranged for us to have another appointment with Opthamology - despite having them give us the all clear 2 weeks earlier. We saw the Opthamology team in early January and were once again told that there is no visible damage. Their only explanation is that perhaps she is finding a "null point" - a way in which she can hold her head and look around where her eyes stop shaking. Essentially she is compensating, coping - which is good. She will be back to see the Opthamology team in March.
Evie also had her first appointment with Endocrinology since her diagnosis. She was given a stress test and passed! They are happy with her development and have no concerns. They keep an active watch on her blood work each week, and have asked she come back in June.
On top of all this, on what was supposed to be our 2 weeks of rest from Hospital appointments and chemotherapy, Evie was re-admitted as an In Patient in early January. She came down with a very high fever. The "rules" we were given state that once a fever passes a particular temperature we are required to call the hospital and talk to her doctors. They requested we come down to the ER to be properly assessed. After thoroughly checking her out they diagnosed her with RSV (Respiratory Syncytial Virus). It is quite common, especially in babies going through their first cold and flu season - apparently 60% will get it. In her case, the RSV caused her to get Bronchiolitis - which was explained to us as bronchitis in children that has gone further into their lungs mainly because physically they are so much smaller. She was closely monitored and we were released four days later. We took home a ventolin puffer and chamber, though we have not had to use it. Once again, I can't say enough about the team of Nurses (and doctors) who took care of us at Sick Kids.
And finally Evie was scheduled to have her first update MRI on January 21st. Unfortunatley they cancelled on us because of her previous RSV infection - anesthesia is too risky if there has been an infection involving her breathing/airways. We were really disappointed, especially because we only found out a day before the MRI. We are now looking forward to her rescheduled date, March 11th. This MRI will be the first chance to look at the state of the tumor since diagnosis - so this date cant come fast enough!
When I look back at all I have just mentioned, it's no wonder why I feel like January disappeared! Aside from the medical, we were busy as usual. Evie seems to have found a love for food (fingers crossed) - or at least a love for chicken. She is eating now, a high calorie high protein diet which seems to be working for her. She continues to be on an upward trend - Paul and I couldnt be happier, or more relieved. She is also the fastest bum scootcher around! She pulls up on everything and walks along things a bit too. Just this morning she climbed up and over a storage bin we were using the block a doorway...granted she did the up part far smoother than the over...it was sort of a thud. Eek. No worries, she's absolutely fine!
Isabelle is losing teeth like they're going out of style and is also quite the scholar. She has recently started having weekly dictés (spelling tests) and has scored perfect 3 out of 4 weeks! She thoroughly enjoyed her snow day this past week too.
Paul and I are also doing well. We again wanted to say thank you to all of you for your support. As I mentioned over the holidays a friend had recorded some Christmas songs and made them available for download. He recently told me that he was able to donate the proceeds to Sick Kids - over $300....thank you so much - it means a lot. I also want to say thank you to another friend who kindly donated to Sick Kids in lieu of favors at her daughter's Christening. Your generosity and thoughtfulness makes us remember how lucky we are.
Paul and Kristine
