Monday, March 29, 2010

LLS Article on Emily

Tuesday, March 23, 2010

Leukemia and Lymphoma Society's Girl of the Year.

The Leukemia and Lymphoma Society is split into regional chapters. For our region, Emily was selected as the "Girl of the Year". She was nominated by her social worker, Leah, who we have assigned to our case at Packard Hospital. Leah of course checked with Tracy and I before she nominated her, and since we have been very public about her disease and battle, we really didn't have an issue with it at all. Tracy and I see this as a fun experience that we get to be involved in, and we have the feeling that a lot of money is going to be raised through the campaign.

Here's a little information about the campaign and what is going on. The LLS (leukemia and lymphoma society) have a campaign called "Man and Woman of the Year". It's a group of very influential people, men and women, who enter to compete against each other to raise the most money for the LLS. These adults are not necessarily cancer survivors, but a lot of them have been touched by cancer in some way in their lives. So they are competing to raise money. In order to help them raise money the LLS chooses a Boy and Girl of the year. The Boy and Girl help each of the Men and Women of the year candidates raise money. They help all of the adults so the kids win no matter what, and it's just an experience for them to be recognized for their battles against cancer, representative of all the people who have Leukemia and Lymphoma, and show that you can survive. And let's face it, people are more willing to donate when they see a picture of a sweet little girl or boy who has had to fight the disease. I don't mind "using" Emily for that at all, I mean she is super cute, and very good at expressing herself, so she's a natural for this kind of thing. She is also excited about it, which is also very important, I would only do this if it were going to be a positive experience for her. Emily will have her picture up on the LLS web site and displayed other places too, along with her bio and story.

So for example this coming Friday we are meeting one of the women of the year candidates. We are going to meet her at a nice home in Los Gatos for a photo shoot. One of the contestants, Greg Kihn, has a morning radio show, and we will likely be on the air with him at some point, and other opportunities like that with the candidates to help them raise money.

There is going to be a kick off dinner at the Plumbed Horse in Saratoga, just two days before our cruise. I am going to have to speak at this dinner and share Emily's story. I am a little nervous about it because I've been told there will be around 100 people there. And I can't imagine telling the story without crying, so we'll see how that all goes. But as I think about it, in the event that I do cry, I bet I won't be the only one, so it will be ok.

Emily is doing really well. She is feeling great. Next week is the big week for us. Monday the CT, Tues PET, Wednesday Bone Marrow, Thursday nothing, Friday RESULTs. Dr. Link is even coming in on his day off to give results so we don't have to wait any longer than absolutely necessary, and so we can start to relax and pack for our cruise to the Bahamas and Disney World.

I am taking 3 weeks off of work, my last day is this Friday. My work is being extra supportive of me right now, as they know this week is pretty hard to focus on anything but those test results. Intuit really knows how to treat their employees, I'll always be grateful for how I was treated over the past two years.

Wednesday, March 17, 2010

Emily didn't have her labs today

Emily did not have her labs today and we have no flipping clue what her ANC is. Dosage remains at ZERO. :-)

I wish it were really that easy to deal with, just move on as if it's over. But I can say that ending chemo was easier than I had envisioned. I thought I would have more anxiety than I do. I worry every day, but no more than I did when she was on therapy. I think the week of March 30th with all the tests and the ultimate results on April 2nd will be a hard week. But I realize we can't get to a cure without going through weeks and times like these. Tracy and I are extremely hopeful for good results. I don't even think about the chances for a bad result, but somewhere in the back of my mind I know it's a possible outcome, but I'm not dwelling on it, or more dwelling on the near %90 chance that it's a good result. I made up the %90 btw, no one really knows. It's nice to have a vacation to be packing for that week of all the tests.

Speaking of odds, I FINALLY after two years went and read the Leukemia and Lymphoma Society's web page on non-Hodgkins Lymphoma. I figure that I can finally let myself know a little more. So they claim that for all NHL's,(non-hodgkins Lymphoma) cure rate is currently %84.4. The scary news was 30 years ago it was near %0 for 5 years. Emily and all of us are lucky to be alive now, and even though the LLS won't be biased on treatment centers, we were and are lucky to have Stanford and Dr. Link.

Thanks for all the support along the way from our readers.

Friday, March 12, 2010


Dateline San Jose: In extraordinary fashion team Pepper has delivered team Cancer a devastating defeat. Cancer brought all it's power, a team led by T-Cell Lymphoma known for it's strong crushing offense and also a team known for their trick plays and fouls. And team cancer did not pull any punches in this match they hit hard from the beginning. If you let team cancer score first then teams usually don't walk away winners. But Team Pepper led by their captain Emily, beat cancer ever step of the way. For every curve ball thrown Emily's way, she deflected the threat, and seemed to do it with a smile. Team Pepper looked a little disoriented early in the match, but you could see that once they got in line things just started clicking. Cancer, as usual, wasn't a good sport, played dirty and still got completely shut out. As for MVP, it's pretty clear who gets that award today. Yes, Tracy, Chris, Haley, Dr. Link and Karolina played really well, but Emily Pepper really deserves the credit for the win. Team Pepper is looking to retire with a 1-0 record.

(733 is how many days it has been since Emily was diagnosed with cancer, we won ever day.)

Wednesday, March 10, 2010

Final labs of Chemo are complete, 3 nights of meds to go

Emily had her weekly labs today. (how many times have I written that exact sentence.) We got the results in the standard 2 hours, and Emily's ANC was 2100, which at %75 dose was a little lower than we expected. In fact, Tracy and I were thinking if she had been on %100 dosage all last week there is a chance she'd have been neutropenic today. So once again, great call Dr. Link on the dosage !

Emily has 3 nights of medicine left. Tonight will be 6MP, tomorrow night 6MP and Methotrexate, and Friday night will be 6MP her final dose. Emily has requested to smash a Prednisone pill with a hammer in the back yard on Saturday, which we are going to let her do. The rest of her medication will be returned to the pharmacy so they can properly dispose of it.

One last BIG blog post to go in therapy. I plan to maintain the blog after but probably reduce normal updates to monthly.

Wednesday, March 3, 2010

Labs were as expected we are now 10 days from being totally complete

Emily had her weekly labs today. This will be her second to last weekly lab, and after next week she will only need to go into the clinic once a month. Her ANC was where we would expect, around 5500. Since she is on a %75 dose of her medication cocktail, we expect to see higher ANC scores, since ANC is what you are suppressing with chemotherapy. She will remain on her %75 dose from here on out. At this point the honest truth is being neutropenic is more dangerous than any possible effect of 2 weeks of chemo at this point. I have to remember that as we go through the next few months. When Emily is neutropenic and even hospitalized for it, I hardly worry at all. And what the doctor is saying is the worry about cancer is even less than that worry about neutropenia. I honestly dont' worry when Emily is neutropenic and in the hospital, I hope that in a few months I can be that relaxed about worrying about relapse.

I have to admit that since last week I've been using denial as a coping mechanism, and I'm questioning myself on this strategy. When I learned that the next step if Emily's scan is not clean or if she relapses would be a bone marrow transplant, I couldn't / really or can't deal with that possibility. Many people I know, especially at work, come up to me and commend me on how I am able to juggle a complex position in my company, and deal with having a very sick child. And yes, it's hard and has been hard to do. But I really have been holding on by telling myself this therapy will work, but if it doesn't I really don't know what I will do, or how I will be able to go on. Especially when I heard the next step is a marrow transplant, that's where the denial has come in. Before learning that I have told myself to prepare for the possibility of a bad result, thinking we may have to continue her therapy, but after learning the next step is something I don't think I can deal with, I just decided to tell myself there is no chance the scan will be negative. I really hope I'm not setting myself up for a real fall, when I was so good at keeping honest to myself all the way through.

I filled my emotional gas tank up two years ago with two years of fuel, I'm running on fumes at this point, and there better be a gas station around the next corner, all the signs say it's there, but I can't see it yet. that's my best analogy of how draining this all is.