This is the seventh update I have started and I am very hopeful that I don’t get a writer’s block with this one! I have mentioned it in other entries, and it is just as true now, I am struggling these last many months to find the words that do justice to my feelings regarding the challenges that our particular road presents. My goal for this missive, however, will be to just update. I’ll save the deeper expressions for another time 🙂 !!
On an academic note, the school year is finished for both of my girls. Although Cailyn’s second semester marks aren’t available yet, I’m confident that they both finished their years with results of which they can be proud. Lauryn’s drive towards good marks began this year, her last year of Grade School. Consequently, she was inspired to put a little more time into her studies. Fortunately for her, her efforts were rewarded. Her graduation ceremony was very special. She received a special citizenship award and was given an exceptional tribute by an important teacher in her life.
It’s pretty amazing for a respected teacher to publicly state that Lauryn is leaving her school a better place… what I have reflected on since the ceremony, though, was the equally amazing support Lauryn received from her sister for all of her accomplishments. Many siblings on crazy health-care journeys can experience resentment from time to time… resentments arise when the healthy sibling perceives that his/her sibling is receiving more attention, and they arise when the diagnosed sibling perceives that life for their sibling is so much easier. So… seeing how genuinely Cailyn supported her sister’s success was a beautiful reflection of their strong and respectful relationship.
On an activity note, it has also been an enjoyable, yet sometimes frenetic, year. Cailyn was a member of the senior Orchestra this year. They are an exceptionally talented group of musicians. Listening to them play makes me feel strong emotions. I am thrilled that she has the opportunity to be a member of such a successful and wonderful “team”; together they create magic. And, it never fails, that their music reminds me of a conversation I had with her neuro-surgeon in New York… on November 19, 2004, this surgeon took me to see the images from the MRI scan documenting the outcome of her surgery the previous day. He told me that he was happy with the amount of tumour that he had removed but was concerned about a particular area on the scan. This specific scan prompted him to say that he was pretty sure that Cailyn would walk but didn’t think she’d ever be able to use her left arm. How miraculous it is, then, that she can use her left arm to play the piano, her violin, and her guitar! Cailyn also played wheel-chair basketball this year. Although it was sometimes difficult to get her to go, her season finished on a high note, leading to her making a commitment with the club to play again this next year. This summer, Cailyn is most excited about participating in an intern program to become a counsellor at Camp Trillium. I’m so thankful we have Camp Trillium in our lives; taking her involvement to this next level will mean that she will have it in her life for a longer period of time!
Lauryn had an amazing year with her club volleyball team. Together, they came first in the province and then topped that result with a first place finish at the Canadian Nationals in Edmonton. Lauryn’s experiences with her team are a great blessing to both of us. As a result of these experiences, she has grown as much in her soft skills as she has in her physical skills, and I am thrilled that we spend so much of our time surrounded by wonderful people… it takes a community, as “they” say, and we are so fortunate to be part of this awesome community. I think the highlight of her summer will be her participation in the Ontario Summer Games. Along with a number of her teammates, she will be representing our region in this provincial competition. Should be a lot of fun!
On a health note, Cailyn has had two MRIs since I last updated. The last line documented on her most recent MRI is: “Allowing for slight differences in measurements between examinations, both the solid mass and surrounding fluid component has remained relatively stable…”. It is unequivocally true that an MRI result carries a weight beyond measuring. Our emotional and physical health and well-being is directly impacted by this result. Three days after her last MRI, Cailyn’s nurse case manager called. Her first question was: “How come you haven’t called?” She was surprised because I normally reach out to get the results before three days have passed. I shared with her that I am feeling burnt out… that I had been waffling between calling and waiting, with the waiting obviously winning out this one time. I actually was afraid… concerned that I could receive the “we need to talk about treatments” call, and also feeling that the report of stable just doesn’t alleviate a pervasive underlying concern. Specific measurements aren’t always provided on a report but this report had some… my predominant thought, when I compared these measurements with previous reports from the last two years, was hope that the changes were only attributable to measurement differences and not subtle growth in her tumour. Cailyn has recently started a drug that I am hopeful will help her deal with her significant level of fatigue. Apparently many kids who have received treatment for brain tumours experience a debilitating level of fatigue… having a significant impact on their quality of life. I am so hopeful that this new drug helps her engage more fully with her life!
Three addendums: 1. I know exactly how lucky we are that Cailyn’s tumour isn’t growing out of control, and that there are some options for her if she does need more intervention. 2. there are many less obvious physical and emotional challenges resulting from these journeys that can’t be ignored; and, 3. I know that “staying in the moment” is critical to our health and well-being but I have to admit that it has become harder, and not easier, to get to this state of mind.
Here’s to rebuilding my resilience over the course of the summer!!