April 15th will forever be diagnosis day for us.
(It's also my niece's birthday - Happy Birthday, Laurynn!)
Erin brought up diagnosis day on the way to school today. Maybe it's a sign of progress for me that it wasn't the first thing I thought about this morning. Maybe it's that I was distracted the dental implant appointment I had this morning. As I drove to the Mayo Clinic, I recounted the events of that day...
But, today is a different day, 2 years after diagnosis (2 A.D.). We are optimistic as we continue to heal and move forward. It makes me think of the lyrics from a Counting Crows song titled A Long December: "...and there's reason to believe, maybe this year will be better than the last..."
Today, we are doing alright. Year 2 A.D., bring it on...
Sunday April 14, 2013
We had a wonderful night last night at the Bassmasters event, helping raise money for St. Jude and the Shannon O'Hara Foundation. It was great to have some familiar faces in the crowd as Dan spoke and I read from the book. Erin got in on the act, too, helping us draw some raffle winners and stepping up to the podium to read the names. Her poise and presence makes us so proud.
St. Jude is an amazing place, and after we spoke a mother and her beautiful, bald-headed boy took the stage and shared their story. Through tears, the mother told how, even though they haven't been to the hospital in Memphis, St. Jude saved her boy's life. Research done at St. Jude and the protocol they developed for his type of tumor is shared with other research hospitals and is being used right here at the Mayo Clinic. So, this family could stay local and still benefit from the advancements made in Memphis. He is 9 months in remission. Now that's a cool story.
Research at St. Jude was the theme of our story last night, too. We had asked Dr. Wetmore for an update on Shannon's cells and we shared her note with last night's audience:
Shannon's cells are growing very well! They are now acclimated to a 384-well plate and we are screening compounds (like about 200,000 of them) to see what kills them. We have a library of "compounds" - mostly drugs and anything with anti-cancer or cell activity. We will then narrow down to the "hits" and do a dose response curve on them and identify some leads that may be taken to clinic. Once we have identified some compounds that kill the DIPG cells in the dish we will move to mice and treat mice carrying tumor cells with the drug and make sure it works in vivo. Then I will start negotiating with drug company to get the compound and start writing (another) protocol to bring it to clinical trial. It will be exciting. Shannon's gift lives on. Really, its the best growing cell line that I have.
We think that's a pretty cool story, too...
St. Jude is an amazing place, and after we spoke a mother and her beautiful, bald-headed boy took the stage and shared their story. Through tears, the mother told how, even though they haven't been to the hospital in Memphis, St. Jude saved her boy's life. Research done at St. Jude and the protocol they developed for his type of tumor is shared with other research hospitals and is being used right here at the Mayo Clinic. So, this family could stay local and still benefit from the advancements made in Memphis. He is 9 months in remission. Now that's a cool story.
Research at St. Jude was the theme of our story last night, too. We had asked Dr. Wetmore for an update on Shannon's cells and we shared her note with last night's audience:
Shannon's cells are growing very well! They are now acclimated to a 384-well plate and we are screening compounds (like about 200,000 of them) to see what kills them. We have a library of "compounds" - mostly drugs and anything with anti-cancer or cell activity. We will then narrow down to the "hits" and do a dose response curve on them and identify some leads that may be taken to clinic. Once we have identified some compounds that kill the DIPG cells in the dish we will move to mice and treat mice carrying tumor cells with the drug and make sure it works in vivo. Then I will start negotiating with drug company to get the compound and start writing (another) protocol to bring it to clinical trial. It will be exciting. Shannon's gift lives on. Really, its the best growing cell line that I have.
We think that's a pretty cool story, too...
Thursday April 11, 2013
Erin is sleeping in today as there is no school. We are having yet another snow day. On April 11th. This is one of the worst stretches of "spring" weather I can remember. It's gotta turn eventually...
Erin's birthday was low key, but a success. Her friends at school remembered her big day and each of her classes sang Happy Birthday. After school, it was take out food and an afternoon movie - in front of the fireplace. She finished the day off with volleyball practice and Dan and I showed up at the end with ice cream treats for everyone.
It was the best we could do, all things considered. Our family has been dealing with some tough news this week, and it has conjured up all sorts of memories and emotions.
Erin's cousin Maggie and her husband, Doug, have been tireless supporters of ours on our journey with Shannon. They darkened our door many times and shared many words of encouragement with us along the way. Maggie and Doug are the impetus for our European vacation this summer, helping us plan and planning to be there to share in our adventure.
Doug has two sons, Henry and Owen. Henry, a student at the University of Wisconsin, started feeling ill over the weekend. Monday, he walked into the ER and, within a matter of hours, he was non-responsive with swelling in his brain. Meningitis. Every effort was made to reduce the swelling, but to no avail. Henry is gone.
Doug, Maggie, Henry's mom Meredith, and Henry's brother Owen have joined our terrible club. We are beyond heartsick for them as we know the path they are beginning to travel. We will be there for them and offer any help and support we can. Erin's first words upon hearing the news were, "Poor Owen." Doug and Maggie have built in "safe people" right here on Willow Lane. I hope that brings them some small consolation.
Rest in peace, Henry Mackaman. Wherever you are, please find Shannon and say hello.
Erin's birthday was low key, but a success. Her friends at school remembered her big day and each of her classes sang Happy Birthday. After school, it was take out food and an afternoon movie - in front of the fireplace. She finished the day off with volleyball practice and Dan and I showed up at the end with ice cream treats for everyone.
It was the best we could do, all things considered. Our family has been dealing with some tough news this week, and it has conjured up all sorts of memories and emotions.
Erin's cousin Maggie and her husband, Doug, have been tireless supporters of ours on our journey with Shannon. They darkened our door many times and shared many words of encouragement with us along the way. Maggie and Doug are the impetus for our European vacation this summer, helping us plan and planning to be there to share in our adventure.
Doug has two sons, Henry and Owen. Henry, a student at the University of Wisconsin, started feeling ill over the weekend. Monday, he walked into the ER and, within a matter of hours, he was non-responsive with swelling in his brain. Meningitis. Every effort was made to reduce the swelling, but to no avail. Henry is gone.
Doug, Maggie, Henry's mom Meredith, and Henry's brother Owen have joined our terrible club. We are beyond heartsick for them as we know the path they are beginning to travel. We will be there for them and offer any help and support we can. Erin's first words upon hearing the news were, "Poor Owen." Doug and Maggie have built in "safe people" right here on Willow Lane. I hope that brings them some small consolation.
Rest in peace, Henry Mackaman. Wherever you are, please find Shannon and say hello.
Happy Birthday Erin!
Miss E is 12 today. Finally, working her way towards teenagerdom. She seems much older than that. Dan and I love her more than she could possibly imagine.
Saturday April 6, 2013
Our Spring Break week will come to a close tomorrow, but we've packed a lot in: a trip to Vegas, three days of work for Dan, a trip to the Mall of America for me and Erin, a sleepover for Erin at a friend's house, and we will finish it off with a volleyball tournament tomorrow. Uff da.
You will all be happy to know that Erin followed through on her offer to help me improve my wardrobe. The trip to MOA was more about me and less about her and all those hours she's spent watching "What Not To Wear" came in handy! All kidding aside, Miss E was very helpful and we really had a good time shopping. Best purchase of the day - some kick ass boots. (Erin already asked to borrow them, so that's a pretty good endorsement!)
We were thinking back to last spring break when we made ourselves go on vacation for the first time without Shannon. That was a struggle. We were in Florida trying to find our rhythm as a family of three, and we were still reeling so from our loss and still so emotional.
This year, we can honestly say we are doing better. It's never going to be over, but we talk more about Shannon in happy ways now. We are gearing up for next weekend's St. Jude Fundraiser, and we are excited to share our update about Shannon's cells and the foundation. I'll also get a chance to read from Determined to Matter and raffle off a couple of copies to be sent out as soon as I get them from the printer. All good stuff.
We're doing better, no doubt, but we still catch ourselves thinking about the "what if" every now and then. Dan and I are watching the Twins game tonight and they just showed a young lady who is spending her 21st birthday with her dad at the Twins game in Baltimore. Dan and I talked about how that would have been Shannon. Shannon also had a tradition of going to Twins games on her birthday - I think we did it for her 10th, 11th, 12th, and of course her 13th birthday with Grandma and Papa in Oakland.
So, little moments are hard sometimes, but the big picture is pretty happy for us. We are healing...
You will all be happy to know that Erin followed through on her offer to help me improve my wardrobe. The trip to MOA was more about me and less about her and all those hours she's spent watching "What Not To Wear" came in handy! All kidding aside, Miss E was very helpful and we really had a good time shopping. Best purchase of the day - some kick ass boots. (Erin already asked to borrow them, so that's a pretty good endorsement!)
We were thinking back to last spring break when we made ourselves go on vacation for the first time without Shannon. That was a struggle. We were in Florida trying to find our rhythm as a family of three, and we were still reeling so from our loss and still so emotional.
This year, we can honestly say we are doing better. It's never going to be over, but we talk more about Shannon in happy ways now. We are gearing up for next weekend's St. Jude Fundraiser, and we are excited to share our update about Shannon's cells and the foundation. I'll also get a chance to read from Determined to Matter and raffle off a couple of copies to be sent out as soon as I get them from the printer. All good stuff.
We're doing better, no doubt, but we still catch ourselves thinking about the "what if" every now and then. Dan and I are watching the Twins game tonight and they just showed a young lady who is spending her 21st birthday with her dad at the Twins game in Baltimore. Dan and I talked about how that would have been Shannon. Shannon also had a tradition of going to Twins games on her birthday - I think we did it for her 10th, 11th, 12th, and of course her 13th birthday with Grandma and Papa in Oakland.
So, little moments are hard sometimes, but the big picture is pretty happy for us. We are healing...
Wednesday April 3, 2013
Today is a typical return-from-vacation day: doing laundry, getting groceries, catching up on the mail, etc... the hardest part about today is the shock to the body going from 80 degree temps to highs trying to reach 40 today. Melt snow, melt...
Our trip to Vegas was a success. It was our first time there without Shannon, and of course, that conjures up memories. Shannon and Erin made four trips out there to visit Grandma and Papa, and they created some pretty good memories. Grandma is an expert at spoiling her grandkids. For Erin and Shannon, what happened in Vegas at Grandma's house stayed on Grandma's credit card! Grandma wouldn't have had it any other way...
This first time without Shannon, it was great for Erin to have a friend along. Going to the M& M store or getting a mani/pedi is more fun to do with someone else, and Erin and Emily enjoyed their mix of Grandma and Papa time and some family fun with me and Dan.
We gambled some, golfed some, and took in a show. A Cirque Du Soleil show called Love, which is based on The Beatles music, was a sight to see. That was a highlight for me, Dan, Erin and Emily.
It was good to feel the desert sun on our faces, and it was good to visit and reminisce with my parents. My mom shared with us her "Shannon Box", where she keeps Shannon memories and mementos. Some are sad - obituaries, articles written about her posthumously. And some are happy - photos of Shannon at various stages of development, pictures from earlier Vegas adventures, and a scrapbook thank you from Shannon to Grandma after we took a girl's cross country driving trip. Chronicled in Shannon's handwriting, there's a memory from each place we stopped, including each hotel key. So sweet.
As we looked at the photos, it struck me that if we can remember the memory that goes along with the photo and not think of it in context to what happens later, then it brings happiness. The picture of Shannon at age 3 cutting green beans with Grandma is a happy memory. It makes me and Grandma smile because Shannon was so intent on helping prepare the beans, but she had no intention of eating them! A funny Shannon memory. The fact that she didn't see her 14th birthday shouldn't change that.
So, that's my goal when I look at pictures or think of memories. Remember the feeling I had at that time. Remember the moments, not the eventual endgame.
Our trip to Vegas was a success. It was our first time there without Shannon, and of course, that conjures up memories. Shannon and Erin made four trips out there to visit Grandma and Papa, and they created some pretty good memories. Grandma is an expert at spoiling her grandkids. For Erin and Shannon, what happened in Vegas at Grandma's house stayed on Grandma's credit card! Grandma wouldn't have had it any other way...
This first time without Shannon, it was great for Erin to have a friend along. Going to the M& M store or getting a mani/pedi is more fun to do with someone else, and Erin and Emily enjoyed their mix of Grandma and Papa time and some family fun with me and Dan.
We gambled some, golfed some, and took in a show. A Cirque Du Soleil show called Love, which is based on The Beatles music, was a sight to see. That was a highlight for me, Dan, Erin and Emily.
It was good to feel the desert sun on our faces, and it was good to visit and reminisce with my parents. My mom shared with us her "Shannon Box", where she keeps Shannon memories and mementos. Some are sad - obituaries, articles written about her posthumously. And some are happy - photos of Shannon at various stages of development, pictures from earlier Vegas adventures, and a scrapbook thank you from Shannon to Grandma after we took a girl's cross country driving trip. Chronicled in Shannon's handwriting, there's a memory from each place we stopped, including each hotel key. So sweet.
As we looked at the photos, it struck me that if we can remember the memory that goes along with the photo and not think of it in context to what happens later, then it brings happiness. The picture of Shannon at age 3 cutting green beans with Grandma is a happy memory. It makes me and Grandma smile because Shannon was so intent on helping prepare the beans, but she had no intention of eating them! A funny Shannon memory. The fact that she didn't see her 14th birthday shouldn't change that.
So, that's my goal when I look at pictures or think of memories. Remember the feeling I had at that time. Remember the moments, not the eventual endgame.
Las Vegas
Sorry, folks, but there's been little time to write. We are enjoying our Easter weekend here in Las Vegas. Erin got to bring her buddy Emily, and it's been great fun. Eighty degree temps, a day by the pool, bowling, many golf cart rides around the neighborhood (including one that took them to Walgreen's on city streets. Totally illegal! Erin thought if she got stopped by the cops, she could pass for 16!) a trip to M&M world, a manicure/pedicure, and tonight we are off to a Cirque Du Soleil show down on the strip.
Dan and I have played some golf and played some blackjack. It's been great to be away and disconnect. Home tomorrow...
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