Some of you may wonder why I am writing, in a public blog, about Stella's illness. There are many reasons. One is that I think when Stella is older, after having gone through so much and surviving this (as I KNOW she will), she will have a lot of questions. Even though I wish we were not going through this, since we are I hope this blog will help me remember the details of this time of our life so I can share it with Stella later when she is old enough to really understand.
Another reason for keeping this blog is that I know a lot of our family and friends are thirsty for details and updates, and I realize that I have not been very good about responding to texts, messages, emails and calls. Although it is getting easier every day, this is not something that has been easy for me to discuss and I don't really like getting emotional in front of other people. It is also hard to tell the same story over and over again. Hopefully people can read this blog to get updated on what is happening with Stella, and then if you have questions you can let me know.
But the main reason I have decided to detail publicly what is happening with Stella is because I hope it will help other families in the future whose child gets diagnosed with this same disease. There is so much scary information on the web - when we first got Stella's diagnosis I researched like crazy and mainly ended up freaking myself out. I also felt like I wasn't getting the complete story from our neurosurgeon about what we could truly expect going forward. Don't get me wrong, Dr. Sun is AMAZING, but I need to have more than a vague idea of what we are dealing with so that I can have a realistic expectation of what to expect going forward. Frankly, I was shocked when Stella's tumor had grown less than one month after surgery and felt completely gutted. In an attempt to avoid that feeling moving forward, I decided to try to find other parents dealing with this same disease so I could hear their stories. This is a pretty rare disease, but I figured some of them had to have started blogs, so I started searching for blogs kept by parents who had children battling this same disease. It took a while, but I finally managed to find a few and I reached out to four of these families via email.
These families have been incredible. Less than 24 hours after receiving my emails, I received responses and offers to talk on the phone from each of them. Two of these families are in Boston and have created a foundation to raise money to research Pilocytic Astrocytoma in the hopes of finding a cure (a link to their site is on the left hand side of this blog). I spent three hours on Friday talking to some of these folks. They offered to put me in touch with some of the best doctors in the country working with Pilocytic Astrocytomas so that I could seek a second opinion, told me their stories and what I could expect, gave me tips and, most importantly, gave me a lot of hope. I have been blown away by the generosity of these people. I hope this blog will help others in the way these families have helped me.
Out of the four families I have spoken with, all of their children are alive and doing well (a HUGE relief). Two of the four families had to go through two rounds of chemo to get the tumor to stop growing in their child (the tumor didn't go away, but stopped growing), and their kids have had no new tumor growth for abut 5 years and are thriving pre-teens. Another family has been through one round of chemo and has had no new tumor growth for a year. Another family has been through four rounds of chemo, and their child's tumor keeps growing. Hearing these stories has helped me really understand what we are dealing with and has made me feel more prepared. I think it would be naive for me to think chemo is going to completely kill the tumor, but hopefully chemo will stop the growth. I feel more prepared to go through multiple rounds of chemo if that is what it takes. I know we have a long, hard road ahead, but having some realistic expectations helps me deal with the situation.
In talking with these families, I received a lot of tips. One thing that one of the parents talked to me about was the notion of accepting help. It makes me EXTREMELY uncomfortable to ask for or to accept help from others. Rob and I are very fortunate - we have good jobs, we have good insurance, we have amazing family who has gone above and beyond to be there for us during this time, we have a nanny. . . . the idea of accepting help just seems hard when we are so fortunate and I truthfully haven't felt like we needed it, or am unable to recognize it when I actually do need it! I have been asked by many people if they can make us a meal, send Stella something, etc., and I have most likely not responded to your email/text or call because I felt uncomfortable. The advice of one of the families I spoke with was that I have one of my best friend's act as a clearing house and anyone who feels like they want to do something for Stella, make a meal, etc. can contact them. I understand people want to help and I really appreciate it, although it is completely unnecessary. I also know it is not about me, and recognize that many of our friends and family members feel helpless and want to do something. Because of that, I have asked my girlfriends Stephanie Mullen and Sarah Lofgren to act as my clearinghouse. You can email Steph at stephaniemullen13@yahoo.com or Sarah at sflofgrens@att.net.
Anyways, that is why I am writing this blog. Thanks for reading and please keep Stella in your thoughts and prayers while we navigate this crazy road ahead of us. xoxox
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