We had a good chat with the girls this morning over breakfast. Shannon was receptive to discussing clinical trials. Erin, as always, an eyes-wide-open listener.
We are in agreement that as long as Shannon can feel productive as a member of the Rochester Rebels 12B's we will keep skating. Watching Shannon and her pals goof and laugh in the locker room and at DQ on the way home from our game in Waseca - it's hard to imagine a treatment plan with more benefit to Shannon's mental health. However, our desires need to be weighed against all possible opportunities to extend Shannon's life.
Dr. Rao told us Monday that the National Institute of Health trial wants Shannon - she's an ideal candidate. But NIH recommended we start immediately while they can treat the whole tumor. NIH Nuerosurgeon Dr. Lonser will tell us all about the procedure. We have his number sitting right here. The NIH procedure would require a surgery - inserting a small plastic tube into the tumor area to apply an experimental toxin directly to the cancer. If we wait too long we may miss our window of opportunity with NIH. Aggressive tumor growth - even changes in 4 or 5 weeks - could make it impossible to treat the entire area. Shannon's next MRI is scheduled for the first week in January.
Enlisting in the NIH trial - post-haste - would mean picking up and heading to Bethesda Maryland while Shannon is still feeling good enough to play hockey and go to school. She said to us this morning she usually gets to school and the sadness goes away. Being around her friends is really good medicine. We have so much to consider.
Today we hope to hear from Dr. Wetmore at St. Jude's. Will Shannon be a candidate for that clinical trial? That trial involves daily oral meds - a receptor inhibitor to interfere with tumor growth or spread of the cancer. That trial involves a four-week stay in Memphis. So much to consider.
Shannon told us this morning the steroids are working. She feels better. Less pressure in her ear after just three 1mg doses. But while the steroids help with the symptoms they are not doing anything to slow tumor growth, they just mask the effects.
Both clinical trials are Phase 1 studies - gathering data. There is no proof that either trial will buy us time. So much to consider.
Today Jen and I are circling the wagons and taking care of business to keep us ready for whatever is ahead.
Tuesday November 29, 2011
Not much energy in me to write tonight, but I had a quick score update to post. The Rebels went on the road and skated to a 5-0 victory over Waseca. Shannon scored a goal 19 seconds into the game. A self described, "cheesy goal" from the side of the net, but we'll take it.
Shannon looked all right out there, fighting her mind and her body a bit, but loving being out on the ice. She even stood her ground at the blue line and got leveled by the biggest girl on the opposing team. No harm, no foul - Shannon bounced back up.
Seeing her skate hard during the game and laugh hard after the game with her teammates was a nice little pick me up for all of us ...
Seeing her skate hard during the game and laugh hard after the game with her teammates was a nice little pick me up for all of us ...
Monday November 28, 2011
This should be the beginning of a Temodar week, but this course that we were so sure we were going to be on through next March has taken a detour. Shannon has begun presenting some new symptoms and the first course of action is to start her on the steroids again. Shannon is mad as hell about what she knows this will do to her appearance. Getting off steroids was a great day in this journey and returning to them feels like a step backwards, for sure. But, a slight tremor in Shannon's left side, a little drooping in her lip, and some nausea have forced the doctors hand on this. The hope is that these symptoms are coming from swelling around the tumor and the Decadron can have an immediate effect.
Dan and I had each noticed the almost imperceptible change in Shannon's face over the last few days, but neither of us wanted to be an alarmist, so neither of us verbalized it. We each thought - "maybe I'm being hyper sensitive to every little twitch", or "maybe Shannon's just really fatigued", or "maybe it's nothing" ... but Dr. Rao confirmed it during her examination. In the car on the way to school, Shannon was not only mad about steroids, but she was checking her face in the the mirror and expressing her anger towards us for not telling her what we thought we saw. I think she only half believed my explanation that we weren't lying to her - just trying not to alarm her. Shannon expects us to be completely honest with her about everything, and the protective instinct we have as parents sometimes backfires in this situation...
So, as for the Temodar, we are waiting at least a couple of days to start this cycle. Shannon's records are being reviewed by two clinical trials right now and Dr. Rao explained that she would not be eligible for either trial until at least 4 weeks after her last dose of chemo. So, we will wait to hear from St. Jude's and National Institute of Health on whether or not they think we should continue our current course of action and reassess after the next scan, or, if they think Shannon is a candidate for a trial and how soon this would happen.
Shannon listened today as Dr. Rao explained the need for the steroid again and also began to discuss the possibility of a clinical trial and what each of them would entail. She listened to all the information and then politely told Dr. Rao, "I need to go now so I can get to school." In the elevator we discussed that if we have to pursue treatment somewhere else, we hope we won't have to go until after the Rebels hockey season is over. Maybe that's a pipe dream, but Shannon is gearing up for practice tonight and an away game in Waseca tomorrow.
It's all so overwhelming right now... to think that these research facilities in Bethesda and Memphis are reviewing our scans today and Wednesday means we will soon have a second and third opinion to consider. Shannon told Dan and I, "If we have to do something, we should try the St. Jude's study (oral meds) first and then if that doesn't work, I would try the brain surgery at NIH..." Now, this is putting the cart before the horse a bit, because we don't even know yet what their recommendations will be. But, Shannon is trying to process all of the what ifs and, truth be told, Dan and I are processing all of this right along with her.
My heart just aches for my little girl. No 13 year old should have to think about how far they will go to try to save their own life. But, if and when the time comes, Shannon the Cannon will lead, and we will follow...
Saturday November 26, 2011
I needed a change of tune from my usual mellow singer/songwriter vibe, so today on the iPod it's Mumford & Sons. While the music is alt rock mixed with bluegrass, the lyrics are still poetry. Songs about fear and grace and love and time ...
Time. It's ever present on our minds right now. How much do we have? How should we spend it? How do we get more of it? The goal is to not waste it worrying about it.
Yesterday, Shannon spent her time watching hockey. That meant she and Dan made a trip to St. Paul for a second day in a row, this time to watch the Minnesota Wild game. After that, they headed to watch her cousin Teddie play a tournament game over in Minnetonka. While taking in Teddie's game made for a really long day, Shannon wanted to see him play. Watching Teddie play 5 years ago at a tournament here in Rochester is what inspired Shannon to give hockey a try, so there's always been a connection there.
While Shannon and Dan were on the go, Erin and I had a mellow day. Erin's friend came over to spend the day with her and then Erin and I finished off our night by watching the movie Elf. Erin got some down time in her own home, just what she has been craving.
We have two more days here at home on this holiday weekend. Usually we spend this time getting out the Christmas decorations and getting a tree. The holidays are always a time of reflection on the past year and thoughts towards the new one. That will be a struggle this year. Our goal right now is to fill our time doing the things we want, the things that make us happy, the things that fill us up. It's a strange way to live, not looking back, not looking forward. But, we will try to continue to enjoy the moment we are in as best we can, making the most of our time...
"Well I'm scared of what's behind and what's before ... There will come a time, you'll see, with no more tears, and love will not break your heart, but dismiss your fears ..." After the Storm by Mumford & Sons
Thanksgiving
Just looking to string together A Few Honest Words. OK, I'm already in trouble because I stole that from Ben Sollee who's song I am listening to this morning as I get my day started with some music and some writing.
Most of my material is not original. I draw inspiration and perspective from people all around me all day. I learn stuff from them and apply it somewhere down the line. Sometimes people say; "man, is he smart!" But sometimes they say: "hey, where have I heard that before?"
The truth is on a day like today - Thanksgiving - it is not that hard to string together a few honest words to express how I am feeling. I am scared. I am happy. I am grateful. I am lucky, really lucky. Always have been. I have a heart that lives on flutter and often needs to be swallowed because it is beating in my throat. Summoning up a good cry does not take much. But that's a good thing. It means I am alive and feeling much.
The adversity this family is facing is no different than that of thousands of other families going through really challenging times. And I've stated it many times; embedded in a really bad situation is an amazing journey of support, inspiration, hope and love. We just needed our eyes opened to it. God keeps putting people in our lives that make it OK.
We are going to celebrate Thanksgiving with O'Hara's today at Doug and Maggie's in St. Paul - a house full of love and laughter. Bring your earplugs! Our thoughts and hearts will be with the Harkins' in Las Vegas also.
Shannon is awake - just walked upstairs with a big ol smile on her face. Sunny the wonderdog is licking her like she's been away for months. Happy Thanksgiving.
Most of my material is not original. I draw inspiration and perspective from people all around me all day. I learn stuff from them and apply it somewhere down the line. Sometimes people say; "man, is he smart!" But sometimes they say: "hey, where have I heard that before?"
The truth is on a day like today - Thanksgiving - it is not that hard to string together a few honest words to express how I am feeling. I am scared. I am happy. I am grateful. I am lucky, really lucky. Always have been. I have a heart that lives on flutter and often needs to be swallowed because it is beating in my throat. Summoning up a good cry does not take much. But that's a good thing. It means I am alive and feeling much.
The adversity this family is facing is no different than that of thousands of other families going through really challenging times. And I've stated it many times; embedded in a really bad situation is an amazing journey of support, inspiration, hope and love. We just needed our eyes opened to it. God keeps putting people in our lives that make it OK.
We are going to celebrate Thanksgiving with O'Hara's today at Doug and Maggie's in St. Paul - a house full of love and laughter. Bring your earplugs! Our thoughts and hearts will be with the Harkins' in Las Vegas also.
Shannon is awake - just walked upstairs with a big ol smile on her face. Sunny the wonderdog is licking her like she's been away for months. Happy Thanksgiving.
Tuesday November 22, 2011
We have been all over the map this week with our emotions, but tonight we're feeling pretty good around here. Could be that it's a five day weekend with very little on our agenda. Could be that meeting with our social worker is helping us to process and cope. Could be that a follow up appointment with Dr. Rao encouraged us to explore our options with clinical trials which will give us a second and third opinion about what the MRI scan shows, and she also encouraged us not to give up hope that what we are seeing is treatment effect without the aid of steroids. Could be that Shannon felt up to going to hockey practice tonight. Could be the new iPhones BOTH girls received today!!
I am reluctant to share this news, because it seems quite excessive. To be honest, Dan and I are a little bit embarrassed about it. Erin didn't even have a phone before today! But we had several people offer to do something nice for us, for our girls. And they did.
While what we really want can't be bought - not even from Apple - our girls are grinning from ear to ear. These new toys have brought a little relief from the stress and pain they feel, a little diversion, a little mindless fun, a little joy. So what the hell, new iPhones it is...
While what we really want can't be bought - not even from Apple - our girls are grinning from ear to ear. These new toys have brought a little relief from the stress and pain they feel, a little diversion, a little mindless fun, a little joy. So what the hell, new iPhones it is...
Hopkins Thanksgiving Tournament Champions
This photo doesn't begin to tell the story of the support and love we felt while watching Shannon and her Rebels play their way to a thrilling tournament victory. So many family and friends from the Twin Cities and Rochester showed up that we filled the stands. Some even took a break from hockey and braved the snowy conditions to drive to Lakeville and watch Erin play basketball. And Shannon's teammates and their families were right in the thick of it, pulling so hard for all of us. They love our kid and we love them for it. We laughed and cried and cheered our way through two overtime victories. It felt like this was supposed to happen because one of the things on Shannon's bucket list was to win a championship.
But the cold, hard reality of last Tuesday's news was never far from the surface. And by the time we returned home, Shannon was sullen and worrying about her mortality. She said she thinks the tumor is growing. She struggled in the championship game with fatigue and balance. She worries that she will never be able to have that experience again. "It's too bad my first championship came at the end of my life" she told me through her tears.
So today we start trying to buy more time. We broached the subject of clinical trials with Shannon last night. We are headed to Mayo today to sign a release forms for Shannon's records and discuss with doctors what options we might have. St. Jude's in Memphis or National Institute of Health in Bethesda have trials going on right now. We have to continue to fight, so we will...
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