Finding the Poetry

52 People To Meet Posts, Lessons Learned, People We've Helped

IMG_7611A long time ago, I wrote a poem for my coworkers. I really had a lot of admiration for them, and they taught me a lot of life lessons. They worked hard, played hard, and made the most of every day. They were paralyzed veterans, and as much as I could, I tried to learn from the lessons they shared. Their strength amazed me, and they made me re-think one of my favorite pastimes – complaining. ūüėČ

I think in a lot of ways, I met those men and women to prepare me for what life had in store. It isn’t always easy. It most certainly isn’t fair. But what you choose to do with the pieces you have left after your life explodes… well, that can make all the difference.

Today was supposed to be an “office” day for me. A day to tackle the mountains of paperwork I’m behind on. Instead, it turned into a day to go out into the world and see what it had to share. A lot of what I do is try to raise money for cancer research, and today I had the opportunity to get a check from one of our loyal supporters. That’s a really good thing!! But the reason they are supporters is because their daughter, Addison, died from brain cancer. That really sucks. I get to know them a little better each time we meet, and our conversations nearly always include laughter along with the tears. Today the check came with a hug, and I’m not sure if it felt better to be able to hug them as a thank you or to be hugged in return. Hugging is like that, I guess.

I also had a chance to go visit their daughter’s grave. They picked an amazing spot for her, and I could just feel the love there. Still… it just sucks to visit a child’s grave. I sat and talked with her for a minute about what her parents are doing so that other kids might not have to suffer the way she did. Addison was a fighter that defied the odds.¬†I think she would be happy to know that her tumor got taken out, and hopefully what we learn from it will be used to fight some other child’s tumor.

As I visited with Addison, I listened to her wind chimes and the other sounds of nature there. I thought about how the world shows us poetry if we just stop to see it. Sometimes it is given to us in words, but many more times it is just the feeling you have inside. There aren’t always words to express the feelings we have. The love and the grief are just too big for words.

Addison’s parents let us us her as the “sponsor” for the first child to go on the upcoming clinical trial we are sponsoring, and because of their generous matching gift, we actually funded the first two kids onto the trial. That left me with coming up with a second sponsor person – someone that we can visualize as we fund the third spot on the trial for this unknown child.

And that’s when the day took a turn. You see, there are just so many families we know that have been touched by this disease. So I tried to narrow it down based on significant days to that family, and even that didn’t help! There was the anniversary of Ethan’s passing yesterday, Carter’s birthday today, and the anniversary of Jake’s passing today/tomorrow. (Yes, Jake is special and gets two days. More about that later. )

Most of these kids I never got to meet except through the broken-hearted words of their moms and dads. It’s the same for the adults with brain cancer. They leave behind shattered families who ache to have someone say their name. To know that they mattered and continue to matter.

We are funding this clinical trial to try and save lives, and for me, it is so special to connect the spots on the trial to these special brain cancer warriors. I hope it is special for their families, too.

We post about the progress pretty regularly on Facebook, so please join us there to see pictures of our sponsors and help us fund all 200 spots on the clinical trial. There are some really great stories to share with you as we go, and if you would like your loved one to be part of this movement, just let me know.

P.S. As for the rest of my day, I hope I got to spread a little sunshine into Carter’s family’s world, and I know that my brother and daughter spread a little into mine. I may have more to share on that later, too.

Helping Orlando

Dragon Master Foundation, People We've Helped

20160621_145235-1This week has renewed my faith in humanity. It’s so easy to sit by and watch the world slowly spiral out of control, but it’s really not hard to make it stand still, either. when you are told there is nothing more they can do for you loved one, be it your child, your mother or your husband, your world stops. But only for a moment, and then it starts falling. The more time that passes, the faster it goes. You’re hurtling toward an abyss with nothing to slow you down. With a lot of help, this week, we were able to slow that time down for a family who is so desperately looking for a cure.

Orlando is a sweet 11 year old boy who lives in our hometown. He has two sisters and a brother, and a family who loves him very much. And the local doctors told the family it was time for him to go on hospice. No more options. But that wasn’t acceptable to his mom, Lacy. She kept searching for a way to save Orlando. There are no guarantees in the fight against brain cancer, but she found a treatment that offers Orlando some hope. Some more time. But that treatment was half a country away.

Dr. Santosh Kesari has been working with brain cancer patients for his entire career. From Harvard to UCSD, he has gone where the research took him, searching for better treatments for people with brain cancer, specifically glioblastoma multiforme, which is what Orlando has. In the past few years, he’s had some success with a drug called¬†Everolimus.¬†Everolimus (Afinitor Disperz) got accelerated approval for¬†¬†subependymal giant cell astrocytoma¬†is¬†adults and children in 2012.¬†Afinitor Disperz¬†is the first pediatric formulation to be approved by FDA¬†for the treatment of a tumor that occurs primarily during childhood. (In layman’s terms, astrocytomas turn into glioblastoma multiforme, so that is why this drug is a possibility.)

You can see some of the results Dr. Kesari has had via this article:

http://abc7.com/health/doctor-improves-cancer-teens-health-with-game-changing-approach/1175310/

I know it seems like something that has been FDA approved since 2012 should be common knowledge, but the 5 year study results haven’t been out that long. (Five year study results: http://www.ncbi.nlm.nih.gov/pubmed/26381530) With brain cancer, you really need a doctor who is paying attention to the very latest studies to try and gain as much quality time for the patient as possible. Dr. Kesari isn’t just paying attention  Рhe’s one of the ones paving the way.

But finding a possible treatment is just the first step. Dr. Kesari needs to evaluate Orlando in person to make sure this is indeed a viable treatment option for him. (All other labs and scans would indicate that it is.) 

With brain cancer, the clock is such an enemy, but¬†treatments like this give us real reason for hope. On Orlando’s behalf, we reached out to the community for help to get him and his mom to California to see Dr. Kesari. Thanks to Brad Pistotnik Law and ¬†a very generous offer of the use of a jet, we will be able to get Orlando and his mom to Santa Monica on Monday.¬†We found out yesterday that there is enough room for Orlando’s sister to go, too, and we are so happy that she will be able to be there and give him moral support. They are only 15 months apart, and they are very close.¬†

There will be additional expenses for this family while they are split up trying to care for Orlando and his siblings. Dad is staying in Kansas with the two youngest children, but he works so they need additional childcare. Orlando’s meals will be at the hospital, but there is no coverage for his mom and sister for food. Also, this is an “out of network” hospital, so there will be higher medical bills.

Dragon Master Foundation recently adopted¬†a change in our bylaws to be able to help families in this situation. A brain cancer patient can be sponsored by a person or community, and donations can be raised to directly help that person. The first person to benefit from this new program is Orlando. If you would like to help the family with expenses, you can text the word “cancer” to 91999.

If you can’t help financially, please share this story and join our Thunderclap, an effort to help win a million dollars for cancer research. You can join the Thunderclap here:¬†https://www.thunderclap.it/projects/44920-love-is-on-to-conquer-cancer