Tag Archives: the leukemia needs foundation

The Leukemia Needs Foundation is LAUNCHED!!

For a few months now, myself and Dr. Patrick Fullerton have been working on getting this foundation ready so we can start making a real difference in the lives of Leukemia patients.  Here’s the web address that you can visit to sign up and view what the foundation is about and events that are planned:  http://www.leukneeds.org

Our first event is going to be an art auction on May 5th.  That day is special to me as it’s the one year anniversary of my successful bone marrow transplant.  We’ll be auctioning off art by some amazing photographers and painters.  Click here for more details:  Art for the Cause

I’m really excited about the prospect that I can start giving back as a cancer survivor. 

Below is our Mission and who we intent to help:
The Leukemia Needs Foundation is a Not-for-Profit Foundation created to financially assist leukemia patients while acutely hospitalized.  The Foundation was created by James Weber and Dr. Patrick Fullerton
During the acute phase of the cancer, many patients are unable to meet their financial obligations due to the inability to work, as it was for founding member, James Weber.  He was hospitalized for 45 days, and out of work for 90 days.  During that time, he had to rely on his family to help with his, “Life Bills”.  His medical coverage was 100%, but that won’t pay rent or any other bill while out of work.

The Leukemia Needs Foundation was created for exactly this purpose, to directly fund the leukemia patient so they can meet these obligations while hospitalized. The foundation was creation to fulfill these important needs by its co-founders, Mr. James Weber and Dr. Patrick Fullerton. The company headquarters are located at 607 Prairie Lake Dr. Casselberry, FL 32730.

Our goal is to raise money so that grants(amount based on need) can be made to leukemia patients that are in need.  It’s very hard to focus on getting healthy when your financial life is crumbling around you.

Right now, we are focusing on Memorial Sloan Kettering as the 1st hospital that we’re putting into our network.  Hopefully, our Fund Raising efforts will pay off and we can expand to more hospitals around the country.

I’m hoping to mobilize as many people as possible for the cause.  I invite all of you to check out the site and sign up.  Feel free to pass this blog post along to your facebook and twitter pages.  I’m looking to get it out there as fast and as wide as possible.  Thanks for listening and I hope to see you as a member of the Leukemia Needs Foundation!!

http://www.leukneeds.org

Thanks,
James

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The Misery and the Majesty

Ok, so here’s the part where I say, “sorry about not posting more videos”…It was a little harder than I thought to get motivated to do these little productions when I was going through some of the radiation and Chemotherapy treatments.  It all went really fast though.  It was 4 days of Radiation, 4 days of two types of Chemo and then the next day…Transplant!  So it was a little fast and furious when it was happening and not without it’s miseries.  The 11 radiation treatments gave me a sunburn on my entire body(yes, there too…lol).  So itching and redness were what I had to go through there, plus some general discomfort.  The next Chemo, Cytoxan was so strong that I was told to shower at 1 hour after the drip finished and also at 5 hours.  Apparently, it seeps out of your skin and can give you a nasty rash if you don’t shower it off quickly.  So then…on to my favorite Chemo, the Rabbit ATG.  This one is the death knoll for my old, flawed immune system.  The reason for the rapid fire radiation/chemotherapy treatments was to get my immune system to Zero.  By the beginning of Day 2 of the Rabbit Atg, my White Blood Cells were only at .1.  By the end of the day, they were gone.  I was more fragile than a newborn baby right then.  I had no immune system at all.

So the next day they decided to get right to the transplant, moving it up a day early.  It was very anticlimactic as the whole procedure took 8 minutes in my hospital room.  Stem Cell technology is a beautiful thing and so are all of the amazing doctors and nurses that have cared for me this whole time.

The 1st night after the transplant, I was seeing double vision, chills, sweats, and some weird out of body experience that I still don’t understand.  Who knows, it could have been the stem cells moving around my system mixed with all the different meds I was on.  It was a rough night.  I had a bad fever that night as well.  After the right meds were pumped in me, I woke up fine the next morning.

The next days were kind of a blur of sleeping and being pissed off at this drug, Palifermin.  It prevents mouth sores that are common after radiation and chemo.  My face blew up, my hands blew up and I was really red…not fun folks.  It took about four days off of that drug to come back down to normal.  After that though, the ship started sailing straight, hard, and fast.

I went onto TPN, which is food they give to you intravenously.  All of the treatments screw up your mouth, throat, and kill your taste buds completely.  So the last thing you want to have to worry about is trying to get some food down.  The TPN helped out tremendously for a few days.  Once I was up to it, I requested it be removed so I could start getting ready to leave.

Here’s the best part.  It takes about 10 days after the transplant to show any life in your white blood cells.  For those days, you’re just waiting, waiting…hoping that the transplant worked.  The Day I got my first WBC(White Blood Cell) # it was .4.  Much higher than the .1 they expected.  Then the next day it shot up to 3.  The day after that it was 14(normal range is usually from 5 to 9).  So you could see right away that I had a wonderful doctor, Dr. Papadopoulos, that picked a great donor for me.  That isn’t such an easy task at all.  I’d like to give another shout out to Dr. Shani and her team that were able to get me to a place where Memorial Sloan Kettering could take me in for the next steps. Both the Lennox Hill and Sloan Kettering doctors and nurses were amazing.  I would highly recommend either hospital.  Photographers, if you’re looking, google Jill Krementz.  She’s a volunteer here and has shared with me some of her amazing photojournalism work and time.  Thanks again Jill for coming by.  sample of her work: Teddy Kennedy
So here I sit at 1 in the morning writing all of you about my little adventure…guess what…I’m going home in the morning!!  The docs say I’m doing great and it’s time to move onto getting stronger at home.

So that’s the little story behind the second half of a monster health issue.   Here are some photos that I took along the way…


These two images were from my window at night…not a bad view…

This was one hell of a bad day for me, dealing with the Palifermin drug…I think this is me at my worst, most puffed up.

Staring at the ceiling…did a lot of this. 😉

Ok, I had to do my usual hospital iphone self-portraits.  It’s easy and kinda fun. 🙂  Those images and the two below were taken on my last night at the hospital.

Ok, for this one, I have to say that I’ve been watching PRISON BREAK on Netflix and had to give it a shot. I look like a total criminal here…kinda dig that. 😉

And….I had to save the best for last.  My beautiful, Angel DONOR wrote me a letter that just goes to show you that there are good people out there.  This is so amazing to me that someone who doesn’t know you, but knows your sick, and they can help.  Indeed, she wanted to be my Donor.  God Bless you(no names are allowed until 1 year after the transplant).  All correspondence has to remain anonymous(thus the blackout areas on the paper).  It brought me to tears when I read it.  It makes you want to go out and do something for someone in your life that is in need…

 

Without my mother, father, and Girlfriend Maria, I would not have gotten through this as well as I have.  I wish I had a photo to post, but they’re all on your cameras….parents!  Give up the photos and I’ll post a few.  Here’s one of Maria. 🙂

 

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Radiation Nation

Part I of the Video blog update…

Me waiting for the radiation guys to get me…

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