Yes, There Is Hope!

Sorry for the delay in updating, but we did indeed go to New York, attend the conference and see the doctors.

On the evening of Friday, November the 13th, we went to the airport and caught a 1am flight to New York, with a layover in Houston. We got into New York at 10:30 am and took Super Shuttle to the hotel, where we were able to check in early and sleep.

We rested until the evening, when we went out on the town. We were right in the theater district and loved wandering around Times Square. We had dinner at Bubba Gump's Shrimps place. One person who donated money to us after we had enough specified that it be used to do something fun while we're in NY, so we did. Elizabeth is a big fan of High School Musical, so we went and saw the movie in a theater on 42nd street. We both loved it.

Afterward, we did some more wandering around Times Square. We spent a lot of time sitting on the red stairs (see http://www.nytimes.com/slideshow/2008/10/16/nyregion/16duffy_index.html ). There was so much to take in. We were there till almost midnight, but always felt safe. The city was very much alive with activity. It was like sitting in a shopping mall at midday.

So the next day, we had to figure out the subway system to get to the conference at Union Square. Fortunately, we ran into another family going to the same conference & we just followed them.

The conference was great. These doctors are the ones who are doing the research to find the best way to handle this type of tumor. We were hearing the latest in cutting-edge stuff. One reason why they do this is because they say that it is actually the parents like myself that are pushing the research. We are becoming more and more informed and less likely to put up with what our local family doctor would tell us about what to do, which as we know, is not very effective.

They fed us breakfast and dinner at the conference. Afterward, we took the subway back to Times Square and hung out there more. Neither of us were too hungry, so we snacked in the hotel before going to bed. Neither of us were tired, though so it took a while to get to sleep, which was a bummer, because we had to get up at 1:30 in the morning in order to catch the Super Shuttle for the first flight out in the morning.

So Elizabeth got to be seen by a couple of the doctors and they did indeed say that there is an approach that they feel will be successful. It is similar to one that we did before, but with some distinct new ways of doing it. They say that she will be able to use her hand again!

The discouraging thing is that they also said that they cannot cure it. It will come back again, possibly in 5-10 years. Elizabeth is disappointed and wondering if it would be worth it, given the past failures. But I'm pretty sure she'll go through it. It promises to be a long process, but I'm game if she is!

Our next step is to get her insured, which may not be easy. More work!

Thanks for visiting!

Wow, Are We Blessed!

Would you believe that I got enough donations for this trip within 48 hours of my plea?

Wow, wow, wow!

Lots and lots of donations, as little as $5 all ads up quickly! On top of that, most of these donors are strangers to us! What wonderful people this world has!

I actually didn't even email out to my whole address book. My email program had a meltdown about half way through. But I guess that's no biggie, since it all came through anyway!

I have enough money for the trip and if there's any left over, I'll save it in case we need it for any expenses involved with whatever treatment is ahead of us. I opened a bank account just for this, so that I don't get it mixed up with our personal monies.

But for now, I don't need any further donations.

I am so grateful for everyone who donated.

Plea For Help

Help save Elizabeth's arm!

I've never blogged before, because I'm not confident that I would have the time to blog on a regular basis. However, this time, I'm doing this for my daughter and hopefully It will not be a long-term project. You see, I plan to have this as a temporary blog that will chronicle the events in our efforts to save my daughter's arm, which I hope will take only a few months.

For those of you who know my daughter Elizabeth, you're probably surprised to find out that she has grown up with a benign tumor in her arm. She never wanted anyone to tell anyone about it because she didn't like people to treat her differently because of it.

Elizabeth's tumor is not that common. It is called a Hemangioma or venous malformation. It is a tangle of thousands of extra blood vessels in her arm and hand. We first noticed it when she was seven. She had surgery at the time, but it was completely ineffective. Later when she was fourteen, the tumor grew larger so we found a new approach to the problem. That procedure was equally ineffective. Now once again it's growing even larger, to the point where she can no longer use her arm and hand. She can't even open her hand and it's very painful.

Elizabeth is now 19 and is anxious to dive into her own adult life, but until the tumor is taken care of, her prospects are limited.

We have been invited to attend a November 15 conference where she can be seen by all the top doctors in the country for this particular kind of tumor. If there is any hope of Elizabeth's arm becoming more normal, we will find it there.

The conference and doctors' visit will be free for us, but we need money to pay for our airfare and hotel. I figure we need about $1500 for this trip. Beyond that, it is likely that the doctor that will treat her will be in another state, and we will be needing to travel for treatment, but I have no idea what that would entail.

I'm about to email everyone in my address book to unabashedly appeal for some help in getting my daughter to this conference.

We appreciate anyone who can help us out here.

[personal information removed] 

If PayPal is the preferred method of payment, donors can use elizabethsarm@ochomeschooling.com

Elizabeth sure appreciates the help. She is looking forward to the day when she can use her arm and hand again!