Friday, May 28, 2010
For the millions of who are suffering and dying from diseases which currently do not have effective treatment, this article should be a huge wake-up call. While the NIH and other government programs value and fund scientific discovery, advancement of knowledge and careful basic research, early and sometimes very promising discoveries are left in fallow fields. Huge financial barriers, patent and licensing issues, and a lack of scientific appreciation for the drudgery of early drug development seem to contribute to the difficulties of bringing very exciting advancements to bear true clinical fruit.
According to Newsweek, "Private foundations have veered away from the NIH model, requiring scientists to share data and do the nonsexy development work required after a discovery is made." Given this, I would encourage everyone to find a private foundation involved in this kind of clincial funding which is looking to solve a problem you feel passionate about--be it malaria, childhood cancer, or scleroderma. I believe that many of today's medical problems will be solved through this type of private giving.
OK, off the soap box. :)
We had another horse show this past weekend, and more success... but I admit it was a bit bittersweet. It feels so surreal to be ending May and heading into June, into summer, into Chicago.
I admit I feel frustrated: there is so much to be done, and I see the summer stretching out ahead with lost weeks or months. I'm so grateful that the folks at Northwestern were so accommodating with the schedule, and yet the kids can't quite understand why I'm missing their upcoming field trips and other special events.
I've had a few sleepless nights sorting through my worries, which center more around all the STUFF I need to do and less around the looming medical events. Kinda funny, life. :)
Love you all and I continue to relish in the support you provide each and every day. Updates will get a whole lot more frequent in the months ahead, so please stay tuned!
Wednesday, May 5, 2010
Or is that Fahrenheit?
Well, I'm leaving for the start of my stem cell transplant escapades in 32 days. June 6. I'm starting to make some preparations... I bought a used exercise bike on Craig's List so that I can pedal away and watch some TV when I get home--you may recall I will be banned from the stable. Although, honestly, I'm going to push for some visits with a mask on... I can't imagine being away from the stable completely for such a long time.
I'm trying to get summer camps together for the boys to keep them busy. Jake is even signed up for a week away in Washington, D.C.! He was invited to a leadership program and he is raring to go. He is also hoping to spend a week as a ball boy at the Southern California Open tennis tournament. Luke will spend that week in a swim, golf and tennis camp with his good friend, Jenny. The boys will be busy, but I have to actually nail all these plans down and pay for it! Wish me luck!
We are even going to squeeze a family vacation in between testing and harvesting. I will be in Chicago June 6 for about 10 days for testing, zip home for Jake's graduation, and then we're off to Europe! When we get home, I'm slated to go back to Chicago for 2 weeks of treatment and the stem cell harvesting procedure. Then I'll be home for about 10 days, and finally be admitted to the hospital in August for the transplant itself.
I'm excited, anxious and a bit afraid. It's going to be a really short month and then a really long year.