A little while ago I noted that the more time that passed, the less frequently we seem to get support from our community. In the beginning, there were lots of visits and phone calls, offerings of food and general help. I would send an "Evie Update" and within minutes would have replies flooding my inbox, my BlackBerry beeping as each message came through. I would always read each persons message immediately, excited and touched by the outpouring of kindness and support. Over the past 18 months, this has faded. We are not in need of dinners anymore, and yes we still get phone calls from our friends, but the calls are not about Evie, just about life. Thirty plus emails became ten to fifteen, which then became four or five.
It has been four days since I sent out my last email update about Evie's progress. In four days I have had one reply - and though it was an incredibly sweet and thoughtful email, it came as a result of me noting that it was the first time that I did not have any replies.
Dont get me wrong, I get it. This whole thing has been normalized, it happens over time. I know that everyone still wants to know how she is doing, and are satisfied to read the emails, absorb the information, and then move on with the next thing on their to do list. It's the same way that I make plans for tea and playdates "as soon as we're done with the chemo appointment". I know it has nothing to do with a lack of caring.
I suppose even this far down the road, replies give a bit of validation. They make the effort taken to write the emails, to include the little anecdotes about Evie growing (and not just all those appointments), worth it. Sometimes it's just nice to hear from someone, and to get that reminder...
Someone said to me not so long ago, "I just worry about asking about Evie because I dont know if you want to talk about it". Fair enough. For the record, Paul and I have no problem talking about it - but we in fact worry about always talking about Evie and upsetting others. Talking about it is one thing, clearly nobody ever wants to make anyone else uncomfortable, its a touchy topic and for some people, it's difficult to deal with and to hear about. BUT, when I sit down and write an email, it is my way of opening up the flood gates. It is my way of starting that communication about Evie and all that surrounds her. I am talking about it, and inviting you to listen, and ask questions, and talk back. I'm doing the hard part, initiating....a little reciprication can go a long way.
Just another one of those things....you dont realize how much you need something, until you stop getting it.
To the one person that did reply, no matter what got them to do it, thank you. I thank you so much, because I know that you love us, and care about us, and that you sent your reply not just for yourself, but as a reminder to us that everyone still cares.
Wednesday, March 21, 2012
Saturday, March 17, 2012
Email # 8
Another email long overdue...
It's St.Patrick's Day...which means that since our last email update we have enjoyed Christmas, New Year's Eve and Day, Groundhog Day and Valentines Day....not to mention countless birthday celebrations, school events/activities/breaks/registrations, and of course, wedding planning. Overwhelming would be a great word to describe the past three and a half months!
Evie has had appointments with each of her caring departments in that time as well. In December we had a check up with Endocrinology, who again confirmed that hormone wise she is developing well and there are currently no concerns. Early January brought an Opthamology check up, and happily her vision also remains on track. As Evelyn gets older the process of vision testing changes, and they are able to do a more thorough exam. This is great because it gives the doctors more information to go on to actually confirm results. Evie will also be able to better communicate what she can/cannot see, etc. However, I imagine the whole eye drop part will get a little trickier as she not only grows stronger, but also a will to resist!
MRI #6 was on February 6th. As usual, Paul had booked the day to come with me and Evie to Sick Kids. MRI's remain the one thing I really dont want to do on my own. It's a lot of waiting, and it's also the only appointment where I ever have to leave her. I'm thankful that Paul is able to come, and that his work is so understanding with our situation. Despite my own discomfort, Evie goes through the process like a pro, and a short while after we drop her off, we get to meet her, all drugged and drowsy in the Recovery room. The 6th was a Monday, and though everyone says "No news is good news"......Paul and I would much rather a phone call with results. It never came, and I went to our weekly Friday chemo appointment looking for answers...and got them. Dr. Bartels confirmed that Evie's tumour is stable, again. This means there has been no growth throughout the last two scans, essentially a six month period. This is the positive news.
It would appear as though Evie's tumour stabilizing coincides with when her treatment plan last changed - which is great. The new drug that was added however, was only supposed to be given short term. We were also under the impression that Evelyn was still on a 70 week protocol, which would mean her end date would be the end of March (now). This however is not the case. We currently have no set end date for chemo. Our guess it that when her team changed her treatment last september, they established that Evelyn is not necessarily on a protocol anymore. Paul and I didnt realize this, we assumed we were continuing on, but in retrospect, it makes sense....change the drug, change the plan. We wish we put that together a little sooner. So, as far as chemo goes, our plan is now more of a day by day, or MRI by MRI. Doctors are happy with the results right now, and are hoping to see further stabilization, or better in the months to come. This has been a hard concept for me to accept...I very much enjoy routine, and timelines. However, I am now at peace with the idea of "not knowing". Think about it, there's a lot more we dont know about what is going to happen in our lives, than what we do know....Paul and I now have no countdown, no pressure. We go through chemo one week at a time, one scan at a time, and in the days between, are enjoying the fact that Evelyn is thriving, and happy. We do still have moments of anger and frustration, but that's ok...we are confident that we are doing what we need to do, and what is best for our daughter long term....and if that takes a bit more time, so be it - she's worth it.
One more thing....I wanted to invite everyone to participate in Meagan's Walk 2012. "Evie's Team" did great last year, with only 5 members and two days to fundraise, we raised over $1,200.00! Incredible. Meagan's Walk supports Paediatric Brian Tumour Reasearch, and happens every year, usually on Mothers Day. It's a 5km walk, from Ontario Place to SickKids Hospital, and ends with a big BBQ/Party! Registration is not yet open, but I will be letting everyone know when it is......we'd love to see "Evie's Team" grow! This year's walk will be on Saturday May 12th.
We hope you are all well, and again thank you for all your kind words, thoughts and prayers.
Paul & Kristine
It's St.Patrick's Day...which means that since our last email update we have enjoyed Christmas, New Year's Eve and Day, Groundhog Day and Valentines Day....not to mention countless birthday celebrations, school events/activities/breaks/registrations, and of course, wedding planning. Overwhelming would be a great word to describe the past three and a half months!
Evie has had appointments with each of her caring departments in that time as well. In December we had a check up with Endocrinology, who again confirmed that hormone wise she is developing well and there are currently no concerns. Early January brought an Opthamology check up, and happily her vision also remains on track. As Evelyn gets older the process of vision testing changes, and they are able to do a more thorough exam. This is great because it gives the doctors more information to go on to actually confirm results. Evie will also be able to better communicate what she can/cannot see, etc. However, I imagine the whole eye drop part will get a little trickier as she not only grows stronger, but also a will to resist!
MRI #6 was on February 6th. As usual, Paul had booked the day to come with me and Evie to Sick Kids. MRI's remain the one thing I really dont want to do on my own. It's a lot of waiting, and it's also the only appointment where I ever have to leave her. I'm thankful that Paul is able to come, and that his work is so understanding with our situation. Despite my own discomfort, Evie goes through the process like a pro, and a short while after we drop her off, we get to meet her, all drugged and drowsy in the Recovery room. The 6th was a Monday, and though everyone says "No news is good news"......Paul and I would much rather a phone call with results. It never came, and I went to our weekly Friday chemo appointment looking for answers...and got them. Dr. Bartels confirmed that Evie's tumour is stable, again. This means there has been no growth throughout the last two scans, essentially a six month period. This is the positive news.
It would appear as though Evie's tumour stabilizing coincides with when her treatment plan last changed - which is great. The new drug that was added however, was only supposed to be given short term. We were also under the impression that Evelyn was still on a 70 week protocol, which would mean her end date would be the end of March (now). This however is not the case. We currently have no set end date for chemo. Our guess it that when her team changed her treatment last september, they established that Evelyn is not necessarily on a protocol anymore. Paul and I didnt realize this, we assumed we were continuing on, but in retrospect, it makes sense....change the drug, change the plan. We wish we put that together a little sooner. So, as far as chemo goes, our plan is now more of a day by day, or MRI by MRI. Doctors are happy with the results right now, and are hoping to see further stabilization, or better in the months to come. This has been a hard concept for me to accept...I very much enjoy routine, and timelines. However, I am now at peace with the idea of "not knowing". Think about it, there's a lot more we dont know about what is going to happen in our lives, than what we do know....Paul and I now have no countdown, no pressure. We go through chemo one week at a time, one scan at a time, and in the days between, are enjoying the fact that Evelyn is thriving, and happy. We do still have moments of anger and frustration, but that's ok...we are confident that we are doing what we need to do, and what is best for our daughter long term....and if that takes a bit more time, so be it - she's worth it.
One more thing....I wanted to invite everyone to participate in Meagan's Walk 2012. "Evie's Team" did great last year, with only 5 members and two days to fundraise, we raised over $1,200.00! Incredible. Meagan's Walk supports Paediatric Brian Tumour Reasearch, and happens every year, usually on Mothers Day. It's a 5km walk, from Ontario Place to SickKids Hospital, and ends with a big BBQ/Party! Registration is not yet open, but I will be letting everyone know when it is......we'd love to see "Evie's Team" grow! This year's walk will be on Saturday May 12th.
We hope you are all well, and again thank you for all your kind words, thoughts and prayers.
Paul & Kristine
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