Monday, December 27, 2010

My December

December has almost come and gone and everyone is looking to the New Year so I figured I'd give my audience a little re-cap. Like any month, I had my good days and my bad days, but overall this month was a little reminiscent of those weeks just before heart my transplant when I was fighting to keep up with school, activities, and other demands. I fought walking pneumonia for the last several weeks and the coughing, fatigue, and school-skipping all very de-ja-vuy. I am mostly over it now, but the whole ordeal was a little irritating because I'm already such a germaphobe it makes me wonder how I can prevent cases like this from continuing to interfere with my life in the future. In the long run this won't affect anything and the heart appears healthy, but I have some homework to catch up on and some teachers to avoid *sigh.*

On a more positive note I am officially an adult as I celebrated my eighteenth birthday a few weeks ago. My parents threw me a little "surprise party" in which some friends (young and old) came over to chill with me. It was a little unconventional because my parents had people file in as they showed up instead of all popping out at once. It made it all the more sweet to be surprised by each person. I was completely shocked each time someone showed up. It was great to be so celebrated and I felt very special. I now should feel all the responsibilities and rewards of adulthood, but yeah, right. I will feel all that once I go to college. For now it just means I get to sign my own name at the doctor's office. Other than that it is just another year.

I have been still working with Make-a-Wish in various ways and have seen the best and the worst of people at the mall selling angels. I know it is a hard time of year for a lot of people, what with all the financial pressure, but some parents could be reminded that their children can still get bad messages depending on what you teach them about charity and giving. I had a lot of comments about all of my involvement and most were extremely glad to see me representing such an awesome organization. I have met some pretty cool people and seen some incredible generosity. At least three teachers at Queensbury School bought these "Emily" angels for their students and in the class I have been working with in the fifth grade the students bought the angels themselves. I am sure there are more acts of kindness than I am aware of, but from what I have seen, many sick children will have their dreams come true. Make-a-Wish is one of the charities I am very proud of and thankful to, but I hope that everyone can find a spectacular group to identify with and support during the holidays. There is no good reason not to help other people.

My Christmas was very successful. The best part of my holiday was seeing my brother again. He had been studying abroad so I had missed him a lot. My immediate family was very happy and, most importantly, together during the Christmas time. We followed all of our Christmas traditions like going out to Chritmas Eve lunch with some friends (thanks Rick and Karen) and having pancakes Christmas morning. It was all very festive and joyful.

To conclude the month we took my brother make to college in Geneseo and visited some family in Jamestown (both in New York for anyone far away). It was really a shame to leave my brother in college after only seeing him for about a week,, but I expect getting together with my family will only become more difficult as I head off to college.

I hope everyone had a lovely holiday season and was healthy. My December led me to a bit of ruin in school and gave me a sharp reminder that I could not expect health, but only be grateful for it and led me to have many fun times with friends and family. I think this month was very well-balanced in fun and frustration.

Thanks for reading,

Saturday, November 20, 2010

Make-A-Wish Ambassador

Here is Emily providing a little pay-back to Make-A-Wish for the amazing experience they gave to us. She is available for other causes too, including the HCMA, Children's Hospital, and any other cause she supports.

Thursday, November 18, 2010

We already said I'm famous so...

I am avoiding my government questions on the media. Do you think my teacher will take the excuse, I was on the local news tonight, I have been in the paper the last two days, and I will be in over 500 TV and radio commercials in the next month? Knowing the teacher, probably not. I could explain that my face will be out there. My story will be out there. I will be part of the media. What other questions are there? I don't think he would go for it, but this is a big deal to me. I went to a "kick-off" party tonight. I realized that I am incredibly proud and honored that Make-a-Wish chose the ArenaNet wish as one of the five best wishes of the hundred they granted in the last year. It is just entirely unbelievable. I would just like to clarify one thing because I know some ignoramus will say it.... I DID NOT get a heart transplant so I could be on TV. I AM NOT in the "biz" for fame or celebrity. I am doing this to help Make-a-Wish, that is a charity that truly helped me through a very depressing time and that gave me the best day(s?) of my life. My favorite part of making all these commercials? A boy named Roman. I met this amazing young man while doing these "press" things. He is ten years old and probably the most lovable guy you will ever meet. He had an amazing wish in Florida, and with a little encouragement he made some great ads. I think if nothing more, I have helped Roman's self-esteem, ANet's notoriety, and Make-a-Wish's mission by doing these commercials. If you live in NE New York you will most definitely hear or see Roman and I in the very near future.

Tuesday, November 16, 2010

My B

New rule- I have decided that when I post and am feeling well I will tell you what I am avoiding by posting. I think that is a fun little game, yes? Today, I am avoiding doing my physics homework on Energy and power. Now, on to the real post. I realized that in the last post I left out a piece of information that many know but that makes things make more sense to those that don't. Last month I went down to New York City Comic Con (a festival of thousands of geeks and freaks) to hang with some developers of Guild Wars 2 (my Make-a-Wish game.) It was a really special experience being the VIP of the VIPs while thousands of avid fans were vying for these guys attention. I got to play the game, hear about its development, and talk to the developers. I am so grateful to ANet for giving me "a second wish." I really am always astonished how nice they are. Anyway, this should clear up why I was on a low from not feeling like a rockstar, but being one of the millions.

Sunday, November 14, 2010

Well I Just Wanted to Say HI

So, ironically I have never posted to this blog. It is in theory mine, though, so I have decided to start. Many people have likely lost interest, but don't worry I still have things to say. In the last two weeks I have realized the value of a blog. You can get your ideas and writing "published" with essentially no effort. Many people would kill for that opportunity. I am feeling pretty well, but am fairly busy with school, swimming, QuizBowl, college stuff, and other random things such as Make-a-Wish and helping at the Intermediate School. I know that all of this could crumble away if I get sick and the whole High School seems to have a cold, or flu, or mono this time of year, but I'm trying to stay focused on how well things are going at the moment. I feel so normal getting ready for college. Sure in my only interview so far I explained to the very nice man about how they ripped out my heart and my application screams heart transplant, but other than that I feel normal. I think I prefer feeling special. Hanging out with Make-a-Wish folks or the ArenaNet (Guild Wars) guys is better, but I have to stress out and deal with this like anyone else before I can be a real grown-up. I'll keep you posted.

Sunday, August 22, 2010

No medical news is good news

It's been five months since we've posted anything here. The reason for the gap is that there is no medical news to follow. Since that is the best news it is worth posting, right? Emily finished up her junior year with good grades, completed her college boards with high scores, and has had a good summer teaching swimming at the YMCA and hanging out a lot. She went to visit her cousins in Chicago. She had one trip to Boston for a routine biopsy (it still seems that "routine biopsy" is a bit of an oxymoron) and that turned out well in the end. We had some concern when her blood work came out with electrolytes all messed up, but upon re-testing it was fine (thank you Dr. Blume for questioning the test before hospitalizing her when she had looked at Emily and knew from looking that she was ok). Here's a picture of her in Manhattan yesterday with our friend and now successful playwright and director, Jessica Kane, whose play, Two Sizes Two Small is the top rated play in New York's "Fringe Festival."

Monday, April 26, 2010

Good times

This past weekend was the Junior Prom. Emily invited two friends we met through the HCMA, Mikel and Richard, from the Boston area. She paired up with her friend Miranda and they went as a foursome. Miranda's been sick with an unknown intestinal disorder, and Richard has HCM, so we did not know if they were going to make it through the night. Everybody rallied and they had a great time, winning prizes at the after-party for basketball (Mikel and Richard are both top players) and roulette (Emily figured out that the colors were not evenly distributed and bet with the odds in her favor).

They stayed up until pick-up at 5 AM, and I flew the boys back to Boston at 11 AM and made it back home in time for the Angel Flight benefit concert at 2:30 PM. Emily was the special guest speaker, and once again rallied and did a good job. We were really tired last night!

It is so wonderful to have everything going smoothly. We really understand how tenuous the good times can be, and we have learned to appreciate the ease with which our lives are flowing. Emily is doing well in school, did great on the SATs, is planning for college, and is comfortable (mostly) with her meds and the maintenance issues of the transplant. Jeff is doing terrific at school, won an award for being the top "scholar athlete" swimmer in the State program, and was accepted into a prestigious mathematics program for the Fall in Budapest. Even our garden is doing well and we are enjoying fresh spinach that managed to overwinter on its own. Life is good.

Saturday, March 27, 2010

Make-A-Wish Gala in Saratoga

We haven't posted much lately because everything is so normal that it hardly seems newsworthy. We did make it into the Society pages of the Albany newspaper, following Emily's presentation at the annual Make-A-Wish Gala in Saratoga. Here's a picture of us at the fancy event and another with the Jumbotron in the background. She looked stunning in the borrowed dress (thanks Kendra!).

She talked about the dark stressful days last year in Children's hospital, when Dr. Blume told her she had to stay tethered to a pump while waiting for her heart. Emily explained that Dr. Blume asked her if there was anything she could do to make the waiting better, and Emily reported to the crowd of donors that she told Dr. Blume that she would appreciate a private room and an internet connection so that she could play Guild Wars. She got the game, but not the room, and the promise of a Make-A-Wish. Thinking about her Wish was a great distraction during that period of waiting and during her long convalescence. She transfixed her audience of several hundred people, and she ended by saying, "All my life people told me that I was 'at the low end of normal,' but that day in Seattle at Guild Wars I was a star. Thank you Make-A-Wish." The hands went up in the air when TV 13 news anchor Benita Zahn asked for $10,000 donations. After she took the podium from Emily she said, "Now I need to add Emily to the list of people I don't want to follow on a stage."

Sunday, January 31, 2010

One Year Anniversary

A year ago today Deb was in Emily's room in the hospital when she got a call at 7 AM that a heart was available. She made a series of calls to alert us of the impending miracle.

I was at the Devon Nicole house with a load of laundry in the washing machine. I ran out to the laundry to take the wet clothes out of the washer and locked myself out of the room wearing shorts and a t-shirt. I woke up the security guard, got my room unlocked, got dressed, packed all our wet and dry clothes, asked the security guard to get a shuttle to pick me up, and got to the hospital.

Deb ran downstairs to get a cup of coffee at Au Bon Pain and melted down when there was a line until strangers saw the wild stressed look in her eyes andlet her in front of them.

Jeff got a friend to drive him to Rochester (7 AM on a Saturday for a college kid is a good friend), where our friends Tom and Jerry picked him up in Tom's plane and flew him to Boston within two hours.

Aunt Susie was on the jetway with her daughter Sammi to visit us when the call came. She abandoned her daughter at O'Hare (she was 15) and husband Jon came to pick up Sam while Susie finished her trip to Boston.

Lisa Salberg from the HCMA got a call from Emily and almost drove off the NJ Turnpike when Emily said she was on her way to surgery.

Each of you who is close to us has a story of that day, and the following days while Emily's life was changed from certain death to a total rebirth.

A year later the memories are vivid, but the feeling of constant anxiety we had are gone. The head of the transplant unit, Dr. Betsy Blume, told us: "we will fix her." She was right.

Emily had three friends over last night for dinner and girl-talk. They looked at prom dresses, had cake, and stayed up much of the night. She got up and coached a swim meet this morning. Her attendance this year has been perfect except for the days she has had biopsies.

Our thoughts keep turning to the donor and the donor's family, who are facing a year since they lost a loved one. I hope knowing that you saved several lives by your generosity at a time of horrible stress provides some solace today, and every day since your tragic loss, and for all the days ahead of us. Life is precious, fragile, and worth cherishing.

It's been an amazing year. Thank you everybody for your help and support. I can't say it was easy, but it was a lot easier than the preceding year. Love from all of us.

Bob, Deb, Jeff, and of course, Emily.