UTAH - Carnival and Silent Auction benefitting "The Cure Starts Now"

A carnival and silent auction are planned with proceeds benefiting The Cure Starts Now which funds pediatric brain cancer research. It is in memory of Rex Stuart, a sweet little boy from Utah that sadly passed away a year ago from DIPG, the same brain tumor that Oliver is currently battling. Please attend if you can make it. If not, consider donating to Rex's tribute fund at The Cure Starts Now foundation. Any little bit goes toward finding a cure for this disease that sadly affects so many children and their families. Thank you!

Notes Left Behind

I just read a book, Notes Left Behind, written by a parent whose sweet daughter, Elena, passed away from the same brain tumor that Oliver has and I was amazed and saddened to see how many similar thoughts I've had throughout Oliver's journey. I wanted to share some of the excerpts that touched me.



"... I don't think that every moment demands a lesson. All I know is that these memories need to last. Whether we go to the Eiffel Tower or to the grocery store, they both can be treasured moments if we make the most of them."

"It's funny how you never know how much you can handle until it gets worse. And just when you get used to that, it happens again. But somehow, even with this experience you find a way to make it work because that is how you cope. Not because you deserve it or because you need the experience to set priorities, but because it's the human thing and it is life. And through this experience we will grow, find out what the holiday means and learn to expect more of each other. Together we will use this struggle to make us stronger as a family and support each other when we break down. That is what a family does and how we cope."

"The isolation and fear, however, are always present."

"Our Christmas gift was Elena [Oliver] this year."

"Congratulations! You have cancer. I look around and see the signs of friends and family trying to cope with the news. The child who was healthy yesterday is terminal today. And we do the best we can to help. Sadly there are few options and very little we actually can do. In Elena's [Oliver's] case there may be none. So we give her toys, buy her clothes and spoil her."

At St. Jude... "It seems that in our group there are two types of families. First there are those facing months, if not years, of additional chemotherapy and surgeries. These families have two weeks to one month off to go home, but then they will return for another dose of severe chemotherapy and weeks in the hospital. And while they have the most difficult path ahead, their prognoses are relatively positive. Then there are those who are here for radiation only or combined radiation and chemotherapy treatments. They're going home for good, with the exception of an occasional checkup visit once a month. In some of these cases, the prognosis is still almost 85 percent survival. I envy both. We too will go home after our six weeks and return for only monthly checkups. And while I certainly love being able to take my daughter back home, I'd spend weeks, months and even years if it meant that the survival prognosis would be better than 10 percent. In a way, we are our own class."

"I looked at the snow skis and realized that Elena had never been snow skiing, let aloe even experienced snow deeper than six inches. I realize that this time is lost. All the things I planned to do with her are now fading and I may never have that second chance."

"You can diagnose the disease, but God keeps the time frame secret. I guess it's best this way to keep living and to see importance in every action. I see it now but only hope that the lesson will soon be over and she will be cured. Until then, every weekend, afternoon and morning will be different."

"When it ended and it was time to go, I picked her up, laid her head upon my shoulder and continued to the ferry that would take us home--never mind that my arms had fallen asleep thirty minutes ago. And when we returned, my arms ached, but so did my heart. For despair forces you to live in the present while your mind races to the future."

"Friends don't have to be the same in order to get along. Sometimes it is the differences that make a friendship work."

"We need more time. The chance for miracles is today and the cure starts now. Tomorrow may be too late."

"... with the possibility of this being Elena's last vacation, I'm so apprehensive that I don't want it to begin... There we realized that it's impossible to stop time regardless of how much you love your children. You take pictures, dry the tears, relive the moments and hope that you never forget. But at the end of the day, you look forward, stop thinking and keep moving, for that is the only way to survive. This is ultimately what it's about when you deal with a terminal illness; you deal in the present and you never stop for fear that you will never get back up. And then tomorrow, you begin all over again. It's a type of exhaustion that you can't rest from and a feeling you will never forget."



There was so much more that I felt was lifted straight from my life, although we are experiencing it presently. I am grateful for all of the parents that have documented their journeys with this disease. I'm grateful for their honesty and I've gained so much strength and peace from their stories.

"Caps for the Cure"

Thursday, May 26, 2011


I wanted to do something in May to benefit brain tumor awareness month and so I found 'Caps for the Cure' on The Cure Starts Now website that funds research for pediatric brain tumors. Oliver is one of the heroes on the site and before school got out for the summer I wanted to see if Oliver's school and my mom's school would help out. Oliver's school let the teachers donate money to wear jeans for the last two days of school and my mom's school did the same as well as let the children and teachers wear hats to school for a $1 donation. They raised over $1,000 for The Cure Starts Now! Amazing! Thank you everyone. This will be a May tradition in honor of brain tumor awareness month. Since my child was diagnosed with cancer... I am an advocate for all of these kids and their families. If we don't speak up and do something about it, a cure will never come. Thank you again for everyone that participated!!!

Posters my mom and students made for Lou Henry Elementary

This young woman decided to give all of the money she received on her birthday to Oliver last year.

Miss Witte and her class.

Mr. Finny in one of Grandma's many hats!

'Notes Left Behind' - The Cure Starts Now

May 2011 - Brain Tumor Awareness Month -- Wear gray to support those battling and those that have passed!


I couldn't bring myself to read the book Notes Left Behind when I first heard of it because Oliver had been recently diagnosed with the same kind of brain tumor as this little girl had. I didn't think I could make it through the book without becoming a sobbing mess. It's been 16 months since Oliver was diagnosed and I finally picked it up to read and I'm amazed at how similar my feelings are to her parents, Brooke and Keith Desserich, who wrote this book about their journey. I'm only a few chapters into it and have bought a copy for my mom as well as myself. Another friend who lost her son to a different type of brain tumor read it and loved it as well. I pray for all the families that have lost their babies and those that are still going through it as well as those that are yet to be told the horrific news that their child only has months to live. A cure needs to be found. Every single day new children are being diagnosed while others are taking their last breaths here on earth. It makes me sick to think about. I will ALWAYS do all I can to raise awareness and funds that will lead to a cure for this. NO CHILD should have to go through what our children go through. NO PARENT should have to wonder how much longer they have with their child. It is a nightmare that we can't wake up from.

I know at some point I will be involved with The Cure Starts Now, the foundation that Brooke and Keith started to raise awareness for all pediatric brain tumors. See my hero, Oliver, on this website. May is Brain Tumor Awareness month and I plan on contacting the area schools asking them to help with a fundraiser called 'Caps for the Cure', where students pay $1.oo to wear their hats to school and the proceeds go to The Cure Starts Now Foundation. I may not have lots of money, but I have a new found passion to raise awareness and find a cure. I lived in the dark before, like most people that haven't had to walk in these shoes. I was too busy with the cares of my own family, my own life and rarely reached out to others besides my family and friends. It's hard to talk to people about it, but it must be done because our babies are dying. We can't change the channel, we can't look away because it is with us every second of every day. Will he be here long enough for a cure to be found? Will we find something that will give us more hope that he will survive this? I don't know the future, but I know that I can do something. We ALL can do something to spread awareness and help others. I wouldn't wish this journey on ANYONE. I try to see how I've grown and changed through it and I know I have changed in positive ways as well as negative ways. It is truly a nightmare, but I hope that no one else has to go through their lives in fear of when a tumor will start growing again.

MAY is brain tumor awareness month. I honor all those that have it now and those that have passed. Oliver, as he struggles with it currently, all those little ones that have passed and are fighting to stay alive, my step brother, Alex Swygman, that passed away from pediatric brain cancer when he was 23 years old -- Oliver was only 6 months old, as well as all of the adults fighting and those that have left us too early. There are so many different types of brain tumors that it makes it difficult to treat them all. I won't stop fighting and being an advocate for others. I can't stop...