Friday, August 24, 2007

Thank You's

Here are some of the acknowledgements that I've received for volunteer activities during this sabbatical.

Thursday, August 23, 2007

Another RMH Craft Hour

This craft hour was the most successful yet. This time, I showed each child these samples of the items they could make so they could pick which one to work on first. Then my niece Shawn or I gave them a divided paper plate with the foamie pieces for that item. They could use glue, which we'd pour into one side of the plate so they could dip the foam into it. They also tried, and LOVED, the zots - dots of ultra-adhesive glue that could be shoved into small places (to join wings to plane) or used to attache foamies to one another. Clean and no waiting for things to dry! Zots are my new favorite household repair tool, replacing duct tape so you know it has to be good!

Thanks for reading my blog!
~ Elizabeth

Monday, August 20, 2007

Seven More Project Linus Blankets

In addition to on-going working on the LSSI Team Sarcoma Starter Kit, I've just completed seven more Project Linus blankets! This will be the last of it for Project Linus during my sabbatical time. This week and next my focus will move on to writing Bradley's medical chronology. I started it at the beginning of the sabbatical but my emotions were still too raw and it was too difficult to even flip through the pages of my old daytimer. This time, I'll combine writing with putting together a layout of all of his school pictures. You'll be seeing those!

Thanks for reading my blog!
~ Elizabeth

Wednesday, August 15, 2007

The Team Sarcoma Starter Kit

When I first started planning my work for the Liddy Shriver Sarcoma Iniative, I envisioned using my project management skills to create a formalized project plan for a defined, repeatable process for conducting a team sarcoma. The week in Vermont taught me that the PM approach was doomed before it began. If the folks in Vermont represented our target audience, which they did, it was clear they would run screaming from anything that looked like more work for them, and nothing looks more like work than a Work Breakdown Structure. What the heck I was thinking?

What I learned in VT was of the "can't put into words" variety, but it resulted in a total restructuring of the Plan into a user-friendly "Team Sarcoma Starter Kit". The new name and organization of the material is designed to be easy to use by a busy person who isn't necessarily interested in spending a lot of time on their team, but wants to make what time they do spend as profitable as possible. It facilitates delegating of tasks among team members as one person can offer to take on creating flyers based on the templates provided and another can focus on the media contacts. If the team is only one person, that person can pick and choose which activities to do and get off to a running start with them. There are placeholders for the Shrivers to add information that fall in their area of expertise (ex "How to Approach Cancer Centers.doc"). They can also ask current Team Sarcoma leaders of different types of events to contribute to the kit and insert that in a logically arranged way. The goal is to make it easier for the Shrivers to recruit new team leaders and reduce the amount of time managing the teams takes, as they expect to have more and larger teams in the future. So, here's the high-level outline of Version One of the disk that I sent to Bruce last week. I've volunteered to coordinate the addition of new material in order to have the Kit ready to give out when Team Sarcoma 2008 kicks off, around March. Double-click to enlarge the image.

Thanks for reading my blog!
~ Elizabeth

Thoughts on Team Sarcoma 2007 Vermont

It’s hard to believe it’s been a month since our trip to Vermont and I haven’t been able to find the words to describe the experience. It’s one thing to read a promo that says, “participants will include patients, caregivers, families and medical professionals” and another thing to spend a week with a group like this:

A young Polish man whose Ewing’s Sarcoma primary site was almost identical to Bradley’s, without the lung mets, in remission and married to his chemo nurse.

Children currently in treatment or in remission from rhabdomyosarcoma, with their entire families, two of which traveled from Spain and Mexico.

Children with parents or siblings with sarcoma.

The first day, the children hid suspiciously behind their parents, eyeballing each other from afar. The next day they tested each other and started tentatively playing together. By the third day they were asking to spend the night together and sharing dining tables.

Many with lives in the balance, searching for answers and eager to connect in a meaningful way with everyone and anyone who might know any new thing, any gem that can help them and which they can pass along.

Those in mourning for recent deaths.

Those whose losses are further in the past and who dedicate themselves year after year to honor them in events like this one.

A woman with chondrosarcoma who was told to go home and prepare to die by a major cancer center, but who found a surgeon to perform risky surgery and not only was she biking, she was doing cartwheels.

Families in which more than one person has cancer or sarcoma, biking together.

People currently taking Gleevac for GIST (gastrointestinal stomach tumor). Gleevac is a fairly new drug that doesn’t cure, but keeps the sarcoma from growing - at least until the patient builds up a tolerance, which takes a couple of years. It’s important because it doesn’t have all the nasty side effects of most sarcoma drugs. They all had their hair, were of normal weight and athletically fit. Once I started putting the names, faces and stories together, I looked at these guys and asked “Wait a minute, are you telling me they’re on chemo NOW?” Yep, pills no less. Bradley’s treatment, the standard Ewing’s protocol, was positively barbaric, with no end of side effects. Gleevac makes it possible to live a largely normal life. From the patient’s standpoint, even if a drug doesn’t produce a cure, if it gets them the same state as the horrid stuff, it’s well worth the dollars and cents to develop it. Unfortunately it doesn’t work for Ewing’s.

When we needed a break from biking, we could hitch a ride in one of the sag wagons, joining one of three moderators of ACOR’s sarcoma support groups, unable to ride themselves but on the road with us, to be with their people. They'd known each other for years on-line and by phone, but had never met before.

There was the doctor, a survivor of childhood osteosarcoma himself, who came to speak with us one night about the current state of sarcoma research. He faced a pretty tough crowd, unhappy about roadblocks being put in the way of new drugs and the sad state of communication between diagnosing physicians/sarcoma centers/patients/patient advocates/surgeons/radiologists/etc. It’s sad when the patient knows more than the doctor and has to jump through hoops to get the info flowing, let alone action. His talk was actually pretty depressing. Seems like all the potentially good stuff is still years away and that’s assuming the money keeps coming in to support it.

Counting day-trippers, there were a total of 62 people participating during the course of the week, some for a few days, others only for hours. It was so much to take in. Since most days were spent riding, it was over coffee at breakfast, during rest and lunch breaks on the beautiful shores of Lake Champlain and Lake Dunmore and in the evenings back at the lodges that we picked up bits and pieces of people’s stories. Really, it took all week before I was sure I knew who everyone was and at least something of why they were there. This is one reason I made plans to meet with three of the people I had wanted to meet most (Truus, Dawn and Norma who wasn’t in VT) at Norma’s house in Virginia the next week. That’ll be in another post, as it stands on it’s own as another…..

Incredible, absolutely extraordinary experience.

My Top 10 Pictures from Vermont/NY

ACOR’s website