Priceless

June 23, 2006

I sometimes wonder what the gelcap Erin takes every day actually has inside. Certainly, it has some anti-tumor something, because her tumor is keeping its head down. But could that be all? Consider her schedule for the last week:

Last Saturday--ninth birthday party (lake swimming with 18 of her best friends), plus a sleepover

Last Monday--shopping for a kicky outfit to wear to Washington (successful)

Last Tuesday--fly to Washington DC (first flight cancelled for equipment issues; second flight delayed because of weather). Total travel time: 12 hours.

Last Wednesday--lobby on Capitol Hill--6 meetings. (missed departure flight; caught later flight--no seats available for College Station, so Walter picks us up at Intercontinental in Houston; arrive home at midnight)

Last Thursday--depart for Houston at 7:30 (a.m.) for a day with her church group at the Houston Aquarium

Yesterday--errands, including blood counts (white count has finally returned to the normal range--first time since we returned for Disney), and an evening festivities at the Tjoelkers

Today--leave for Temple at 8:00 (again, in the morning) for a birthday party at a horseback riding school plus swimming. When she returns at 4:00 she will go to a second birthday party/sleepover

Are you feeling sluggish in comparison?

Let me tell you a little more about Gold Ribbon Days and our visit with Chet Edwards. We had meetings scheduled with staffers and aides from the following offices: Kay Bailey Hutchison (her staff calls her Senator KBH), John Cornyn, Joe Barton, and Kay Granger. We actually got the see Chet himself.

He met us at the door, brought us in to his office, sat Erin down right next to him at the conference table, and proceeded to share Skittles with her while he listened attentively and took notes for the next 40 minutes. Twice his staffers slipped in and tried to move him along to his next appointment, but he brushed them off so he could continue to listen to what we had to say. He asked intelligent questions. When he had heard what I had to say, he looked me in the eye and told me we could count on his support for the Conquer Childhood Cancer Act of 2006.

Two planes tickets to DC: $950
A night in the Holiday Inn in the nation's capitol: $198
Meals and snacks in various airports while waiting for flights: $40
Having a Congressman listen: priceless

We Speak for Ourselves and Others

June 19, 2006

Erin's party was blessed. We got much needed rain on Friday night and Saturday morning, and plentiful sun by party time. I have said it before, but it bears repeating: Erin has great friends, and we never take for granted the time we get to spend with them. Thanks to everyone for making it such a special day.

But On To The Business At Hand. . .

Erin and I leave tomorrow for Gold Ribbon Days in Washington, D.C. We plan to make the best of our time and hope to bring a piece of our lives to the men and women who make our laws and govern our country. You all know our story, and most of you agree that we have a story worth telling. I want to introduce you to some of the young cancer patients we have met along the way.

The first is Hannah. Hannah lives in Tomball with her parents and older sister. She is one of Dr. Russell's patients and was diagnosed at age 2, right around the time Erin was diagnosed. She had a very rough time with treatment. She lost her hearing and one kidney. The other kidney struggles. She spent a lot more time in ICU than Erin, but like Erin, always left the hospital with a beautiful smile on her face. I remember that she wore the cutest outfits with matching hats that her father sewed for her. She has just learned that her permanent teeth have no root development because of the harsh chemo she received. Her family hopes that the scans she has scheduled for today and tomorrow will confirm the good news that she is still cancer free.

Ryan, AKA Batman, is another one of Dr. Russell's patients. This boy charms all the nurses at Texas Children's and attacks the world each day with vigor and a terrific sense of fun. Ryan is just drawing near the end of his treatment and is also having scans this week that will hopefully bring tears of joy and relief to his parents. Ryan has had to follow his own path because his body couldn't produce enough stem cells to risk transplant. This has meant extra rounds of chemo instead of transplant. He has also had to have around 50 transfusions just to make it through to this point. Imagine having to keep up with a high energy superhero who is continually on the low side for platelets!

We'd also like you to meet Colby. Colby is just finishing the second leg of his tandem stem cell transplant this week. His mom and dad hope they can make it back to College Station by Wednesday with their precious cargo. The pictures on his website tell the whole story of a much loved little boy who is fighting his hardest to throw off the cancer monster and return to what children do best: playing.

Our friend Razak, with his sparkling eyes and upbeat attitude, seems like he has licked the beast. He has welcomed a new little brother in to his life and is ready to put cancer behind him. We think he is a great model to follow.

There are also children with compelling stories whom we have not met, but whom we follow because we share something in common. Christi Thomas is Erin's age, with Erin's spunk. She was diagnosed right around the time Erin was, but unfortunately has never been able to enjoy even a day where her doctors declared that she was No Evidence of Disease. Despite that she leads a full (full with a capital FULL) life and meets her challenge head on. Her website is one of the spiffiest around. Since April most of the new news has been put on the link marked Blog. Brian from Oklahoma is a tad younger than Erin but has had a very similar experience and is currently on the same roadmap that Erin is following. Spencer lives in Canada and his father's blog makes you laugh even in the face a Spencer's numerous set backs. Sarah also has a parent who captures the pediatric cancer experience eloquently.

I know you can't spend your entire day in front of the computer, but I'd like it if you would take some time to browse. We are representing these children and their families when we fly out tomorrow, and I want you to know who we are speaking for.

Even Walter Noticed

June 13, 2006

Okay, okay, okay. When even Walter notices I haven't updated the web site lately, it's time to get back to work.

It took Erin a full week and a full-strength Z-Pak to get back on top of her game after the Disney World trip, but by the beginning of last week she had turned the corner, with renewed energy, renewed appetite, and renewed spirit to attack the summer with vigor. I have to admit that had she not had stable scans on the previous Monday, I would have taken myself into orbit. She had all of the telltale signs of relapse: low grade fever, back pain, loss of the Erin sparkle. The look inside let me take a much calmer outlook. She was just sick. And now she's better.

Erin completely enjoyed soccer camp at Texas A&M last week. Her small group leader all week was Ashlee Pistorius, who has garnered this list of awards in her first year at A&M (the website hasn't been updated with her sophomore accomplishments, but I know she was the team"s leading scorer and Offensive MVP last season):

• Soccer Buzz 3rd Team All-American
• NSCAA All-Central Region
• Soccer Buzz 1st Team All-Central Region
• Soccer Buzz National Freshman of the Year Finalist
• Soccer Buzz 1st Team Freshman All-American
• Soccer Buzz Central Region All-Freshman Team
• Soccer Buzz Central Region Freshman of the Year
• 2nd Team All-Big 12
• Big 12 All-Newcomer Team
• Big 12 All-Tournament Team
• Big 12 Rookie of the Year
• Three-time Big 12 Newcomer of the Week (9/13/04, 9/28/04, 10/12/04)
• Soccer Buzz Elite Team of the Week (9/13/04)

What an honor and a privilege for Erin to work with her all week in a group with just 6 other nine-year olds. It almost made me weep to hear her praise Erin and say how heroic she was.

Davis made his final trip to Mo Ranch as a youth last week. He fully enjoyed the beauty and comradierie of this 9th summer camp, and knows he is leaving something behind that he can't return to as he moves into adulthood. Speaking of which. He made his first (of many?) bonafide research trip of his life. He is in Louisiana measuring pine tree respiration (or something).

I am in the full stream of summer school. Tomorrow is the halfway point, and I am feeling confident that I will survive. I did complicate my life somewhat by moving offices last week at work, but my view has improved considerably and it gave me a chance to do a bit of housekeeping.

Erin's social calender is filling up rapidly. Ayesha is here for the week to help her plan and prepare for the Big Number 9 Birthday Party on Saturday. We hope the lake won't dry up by then. Erin's big pay-off for enduring the dreaded port removal surgery in March was that she wanted a swim-in-the-lake party for the party theme. On her actual birthday (next Tuesday) she and I are flying to Washington D.C. for Gold Ribbon Days. We will visit as many congressmen and women and staffers as we can and tell them about the need for funding for pediatric cancer. I am sure she will put a great face on childhood cancer for those lawmakers and staffers who think they can think dispassionately about the topic.

I will try to be more dutiful about keeping you all filled in. It's just that during the summer, I can always think of more excuses not to sit at my computer.