The road trip part II

This summer, we took the kids on a 3 week road trip into America. I wish that I could describe the beauty we encountered as well as even one picture taken along the way, but we all know how futile that would be. Instead, I'd like to describe some of the pictureless moments. After a couple of days, we each fell into a flexible routine that could be grafted onto whatever landscape we happened to be traversing. Ted did the day driving and I took the night shift. The kids, totally open and uninhibited, never wondered why they'd fall asleep in the plains and wake up in the Rockies, or why they'd need winter coats one day and bathing suits the next. They were just eager for the Frisbee to be tossed, or the horses to be saddled. Every morning before the coffee was made, Charly would crawl up into Robby's nook, the two of them would snuggle while listening to music. Robby learned that when I get tired, I get silly, and when I get silly I have zero control of the situation. This realization culminated in many many displays of public embarrassment for the rest of the family. I think Maddy may have even rolled her eyes once or twice because of our antics. We know each other within the context of arches, mountains, rivers, lakes, deserts, sand dunes, forests, and bear tracks. No amount of daily grind can displace us from those memories.

Snow = snuggle

I love the snow. When I was a child and the word snow was mentioned on the evening news, my otherwise unsophisticated thought processes became transfixed onto the 8th grade level words that were delivered by correspondents standing outside with thick winter coats. They were waiting for the first flakes to fall because their contracts told them they had to stand outside like idiots. I was waiting for the first flakes to fall because it meant a possible snow day, a transformation of the neighborhood, hot cocoa, a fire, marshmallows in the aforementioned hot cocoa, snow men, snowball fights with the entire neighborhood ect....

I never lost the thrill that I got when snow is in the forecast. Ask me in late February and I'll say the same thing.

Now, I get to see this love build in the warm hearts of my babies. They are too cute all the time, but put them outside with mouths open waiting for the flakes to find their little tongues, and it's almost too much to bear!

Last night we ate a giant pot of soup in front of a fire while watching Star Wars. Welcome back winter, let the snuggling begin!

Little bodies growing in my arms

Every morning when I drop off Maddy, I open the van door to a little girls who's pretending she's asleep. I play along and pick her up and carry her little body inside before handing her off to Gina. We've been at it for a while now...long enough for me to feel her feet dangling lower as the months pass by. I can feel my babies growing right in my arms. Charly's so big now, I have to put in effort just to hoist her up. Every time I pick them up, I win.

Cancer shmancer, let's cure them all!

When I first jumped on board with angiosarcoma awareness, my mission was to get some research done by directly funding labs. I could never have anticipated what would unfold from these efforts. In addition to our success in raising funds, I have discovered that opening up a dialogue with scientists and clinicians interested in this orphan disease can lead to inter-institutional collaborations. As a result of the network that we have weaved, major grants are being co-written by talented researchers who are dedicated to the mission of eradicating angiosarocma! Although we've raised quite a bit of money, science is expensive, and multi-million dollar grants will fuel this area of research far greater than anything we could possibly do alone. By no means am I trivializing the efforts of all who have donated, to the contrary, that "seed money" has and continues to ignite the field!
I feel strongly that ALL orphan diseases could benefit greatly by modeling this system. I'm calling it the one year plan, from disease non grata to R01 (that's a nice fat grant for all my non-geeky friends). Here's a breakdown of the top 5 lessons that I've learned, maybe they could be grafted onto other diseases that suffer from obscurity. You just need a dedicated biomedical researcher with no need for sleep to get the ball rolling:)

1) Clinicians and basic researchers who are thriving while studying diseases that get little or no government funding are reallllly good. While other researchers are securing nice fat grants, they are publishing on the backs of non-profits (like ours!) which don't offer large multi-year pay offs. Basically, they are able to stay afloat in a publish or perish world holding onto a little yellow ducky.

2) The dedicated few who are actually interested in your rare disease, welcome collaborations with open arms. They are passionate about their work and if you provide them an avenue through which they can answer their questions faster, they're eager to participate.

3) Basic research advances from the publications of others in the field. If you think about a paper, it's like the tip of a pyramid, you couldn't possibly describe all the results, all the reagents, all the resources used to generate the "highlights" that make it to publication. If you engage with researchers who have published something interesting, you WILL find out more, and that more can lead to an entire project with like minded researchers. Scientists often have no idea what's going on in related labs outside their publications, so just getting them to talk to each other can lead to the birth of a new project...one that is already in the current funding mechanism of the labs!

4) If you open up your search parameters from those directly studying your disease, to those studying related diseases that may have some overlap, you could potentially tack a project onto one that's addressing a larger indication. This may draw researchers from other areas into your field if you can make a case for the disease being a good model system, or having some, ANY relevance to their research.

5) More projects lead to more data which leads to more publications which draws in more researchers. Once there is enough compelling data to suggest that the mechanism of an orphan disease has been discovered/and or a cure is in the works, the government will take a closer look at grants that are submitted and the field will continue to grow.

5b) This should be 6, but I said upstairs that I'd only write 5. Bridging the gap between clinician experts and basic scientists is 100% necessary for there to ever be a clinical manifestation of the basic findings. Just getting clinicians up to date with current basic research can result in the administration of brand new compounds that might not be FDA approved on label, but are a better option than hospice! There could be a million different cures sitting on someone's bench in a lab, but if the clinicians don't know about them, they might as well be tick tacks.

Wouldn't it be fabulous if we could convince scientists to do a little pro-bono work? Can you imagine if scientists picked a fledgling charity and for one year, got as much done as possible?

If you had a rope

If you had a friend at the bottom of a sinking trench, would you throw a rope over the edge so that they could try and pull themselves out? Would it be ridiculous for the friend to ask for that rope even if it cost 50 bucks? Can you imagine thinking to yourself, "well, I know that it could save their life, but I really just can't be bothered, anyways, that's an entire tank of gas!". Our lives for a tank of gas......

Maddy's 4

When we snuggle and her little legs are curled up against me, she still seems so little, but my Maddy is 4. She's old enough to remember life, to let the moments that are defining her take root in her mind. I was horrified when I thought this disease was going to take me out within months of my diagnosis. The most painful aspect was the thought that my children would have to build a patchwork vision of their mommy upon an unsturdy frame of pictures, videos, this blog and word of mouth..never knowing if their memories were theirs or just reflections of what they saw from 2 dimensional static images. My children know me. They feel my love throughout their growing bodies, they anticipate the next steps in our routine. They will never loose the feeling of my touch, my heart beating next to them, my arms wrapped around them. Happy birthday my beautiful little unicorn, I love being here in the moment with you.