Hi Everyone,
I just wanted to post this link on here:
www.pmpcure.org
This is a new foundation dedicated solely to raising funds for reasearch dedicated to finding treatment and a CURE for PMP. PMP is considered an "orphan disease", meaning it is very rare, and it is a part of the National Association of Rare Disorders (www.rarediseases.org). For a disease to be considered rare, it usually means that there are less than 200,000 cases in the United States. Because this disease is so rare, there is very little, if any, federal funding or National Institute of Health funding for research into a cure.
Prior to the forming of this group, there was no centralized PMP research foundation. This relatively brand new group has a goal of raising at least $100,000 by the end of March in order to award their first grant to further research, and a goal of at least $1,000,000 within the next 5 years. The research being done now is not sufficient for the challenges we face, and this group is the best thing to happen so far to research into this type of cancer.
We found out about this group through the PMP Bellybutton Club--an online community of caregivers and survivors. The board of directors is being presided over by members of this group, and it is an IRS designated 501(c)3 charitable organization.
Another cool thing is you can keep track of the goals online---right now the group is at $81,865--getting close to that $100k donation. You can also just go on to join their email distribution list to keep updated on what progress is being made.
I hope everyone is doing well! Doug and I continue to anxiously await springtime (Doug more than me, I think he's already played a few rounds of golf in his head!). We have a busy few months coming up, and are looking forward to some warmer and healthier times ahead!
Thanks for taking the time to read this quick post.
Love, Lindsey
Monday, February 23, 2009
Sunday, February 15, 2009
Overdue Update
Hi everyone!
I know that it has been a while since I have updated the blog, so I'm sorry about that! But in our case, no news is good news! Doug just finished his 7th round of chemotherapy and is doing GREAT. The first few rounds that he had were really difficult on him and he was feeling really sick. However, we think that his body has adjusted to everything and he really hasn't felt nearly as sick or drained for the last couple of treatments. He still gets pretty tired and worn out during the three days he is being treated, but bounces back very well. He is even putting on a fair amount of weight! For those of you who saw him three months ago, it is a world of difference to now. At his lowest weight he was at about 117, and right now he is tipping the scales at 135-139 range! And of course, for those of you who know Doug know that deep down he is really just a big child, so bribery has been working really quite well to keep that weight going up! Basically, every time he hits another 10 pounds (130, 140, etc) he gets a present. Hey, whatever works, right?? Seriously---hes like a big kid, even down to sleeping with his stuffed "Mr. Met" (a present from me to him during his first consultation at Memorial Sloan Kettering in NYC). In all seriousness, he is eating everything, and I mean EVERYTHING, in sight, its great to have the problem of not being able to keep food in the house vs. the problem of not being able to keep food in HIM! :-) He looks great and besides the fatigue and some lingering nausea that gives him some trouble occasionally everything is going well. He's keeping all those chemo nurses on their toes too. He will have scans and blood tests done in April and we go to visit Dr. Sardi on May 1. Not getting nervous about it yet, but I'm sure we will as it gets closer.
Doug and I had a wonderful valentines day as an engaged couple :). Doug has been going to the casino pretty often since its only about 30 minutes from our house and its a good place to just get out and walk around. So he and his friend pete went there on Friday night to play some cards while I went out with my girlfriends, and he had a lucky night so the next day waiting for me was a beautiful new pink coach bag---perfect for Valentines day. I'm a very lucky girl to have such a thoughtful fiance---I told him he has great taste in purses, women, and diamonds haha. We had dinner at a local restaurant and besides some slow service, food was great. Tomorrow we are going to go to the UCONN v Pitt game in Hartford---we even have matching UCONN sweatshirts to wear even though its corny we love it. I'll try to get a good picture of us and post it on here so you can all see for yourself how good he looks! Besides that, we're just taking it easy, planning our wedding, and spending lots of time together and with friends having a great time.
I hope everyone is having a great February! I don't know about all of you, but we are definitely ready for some warmer weather! we had a teaser earlier this week with 60 degrees on Wednesday but that has passed us by unfortunatly :-). I hope everyone is well, and I'll post some pictures from the game on here later in the week!
Love, Lindsey
I know that it has been a while since I have updated the blog, so I'm sorry about that! But in our case, no news is good news! Doug just finished his 7th round of chemotherapy and is doing GREAT. The first few rounds that he had were really difficult on him and he was feeling really sick. However, we think that his body has adjusted to everything and he really hasn't felt nearly as sick or drained for the last couple of treatments. He still gets pretty tired and worn out during the three days he is being treated, but bounces back very well. He is even putting on a fair amount of weight! For those of you who saw him three months ago, it is a world of difference to now. At his lowest weight he was at about 117, and right now he is tipping the scales at 135-139 range! And of course, for those of you who know Doug know that deep down he is really just a big child, so bribery has been working really quite well to keep that weight going up! Basically, every time he hits another 10 pounds (130, 140, etc) he gets a present. Hey, whatever works, right?? Seriously---hes like a big kid, even down to sleeping with his stuffed "Mr. Met" (a present from me to him during his first consultation at Memorial Sloan Kettering in NYC). In all seriousness, he is eating everything, and I mean EVERYTHING, in sight, its great to have the problem of not being able to keep food in the house vs. the problem of not being able to keep food in HIM! :-) He looks great and besides the fatigue and some lingering nausea that gives him some trouble occasionally everything is going well. He's keeping all those chemo nurses on their toes too. He will have scans and blood tests done in April and we go to visit Dr. Sardi on May 1. Not getting nervous about it yet, but I'm sure we will as it gets closer.
Doug and I had a wonderful valentines day as an engaged couple :). Doug has been going to the casino pretty often since its only about 30 minutes from our house and its a good place to just get out and walk around. So he and his friend pete went there on Friday night to play some cards while I went out with my girlfriends, and he had a lucky night so the next day waiting for me was a beautiful new pink coach bag---perfect for Valentines day. I'm a very lucky girl to have such a thoughtful fiance---I told him he has great taste in purses, women, and diamonds haha. We had dinner at a local restaurant and besides some slow service, food was great. Tomorrow we are going to go to the UCONN v Pitt game in Hartford---we even have matching UCONN sweatshirts to wear even though its corny we love it. I'll try to get a good picture of us and post it on here so you can all see for yourself how good he looks! Besides that, we're just taking it easy, planning our wedding, and spending lots of time together and with friends having a great time.
I hope everyone is having a great February! I don't know about all of you, but we are definitely ready for some warmer weather! we had a teaser earlier this week with 60 degrees on Wednesday but that has passed us by unfortunatly :-). I hope everyone is well, and I'll post some pictures from the game on here later in the week!
Love, Lindsey
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