Help Vinay!

First of all I would like to congratulate all of TEAM VINAY for our efforts and success so far. All of us as a team have been recognized by the National Marrow Donor Program (NMDP) for our accomplishments, and on November 2nd my father accepted an award on behalf of Team Vinay. We were presented with the Lieutenant General Frank E. Peterson Jr. award. This award is given to an individual, group, or organization for their participation with the NMDP for exemplary efforts in recruiting a substantial amount of minorities on the national bone marrow registry. So congratulations to you all, every single one of you deserve this award! We should be proud of our accomplishments thus far.

As for me things are going well. I now only have to go in for check-ups once in ten days instead of the 2-3 times a week. My counts are looking good and everyday I seem to get more of my energy back. I take walks when the weather permits…I did take a little jog the other day to test my stamina….I am really out of shape/deconditioned,. After a short jog I was huffing and puffing and it took me a while to catch my breath. But I have to say that it felt good to get the blood flowing. Rashmi bought me some dumbbells and I have slowly started some light weightlifting (trust me its light weight). I spend most of my days watching a lot of sports on TV. Recently I have gotten bored of television so I am trying to make myself more useful around the apartment and I finally finished reading the Lance Armstrong book for the second time, now I am starting to read the Kite Runner.

I know things are going well and I was blessed to have a bone marrow transplant, but there are others out there that are still waiting for a donor. One such person is Sonia Kumar. She is 38 years old and married to Udaya. They have two wonderful boys, Vinay (age 7) and Vishnu (age 4). She is a practicing dentist and was diagnosed with Acute Myelogenous Leukemia. She is need for a donor. There is another teenage boy that I know who is suffering from a blood disorder(beta thalessemia) and needs a donor. I guess what I am trying to say is that we need to continue spreading the word about registering committed donors.
--- Love, Vinay.

Hello everybody, although most of you already are aware… I’d like to let the rest of you know that I have been home now for a week. It feels great to be home! I guess you don’t realize how much good a hot shower (couldn’t get one in my hospital room for some reason), sleeping in your own bed and home cooking can do for your soul. I expected to be back to near normal when I came home but I find myself feeling tired most of the days and having aches and pains in my body. I also continue to have low grade fevers which the doctors are not fully able to explain. Although my recovery is slow I must add that my follow up appointments with my doctors have all gone well and it is early but, they are pleased with the way my post-transplant recovery is progressing.

At home my days are spent watching dvd’s as well as football and baseball games. I try to sit outside everyday so I don’t feel couped up in the house. Even though I am going through tough times right now, I know I have been given a second chance at life and this will all pass soon enough. Thank you all for your love and support.
-- Love Vinay

Hello everyone, this is Bharath (Vinay’s brother). Sorry for keeping many of you in the dark about Vinay’s progress. Our family is so concentrated on his progress that we do not get the chance to update the rest of our extended family (YOU)! Through this amazing journey Vinay, Rashmi and the rest of us have met some incredible individuals. We truly have been blessed with so many well wishers who have been motivated to make a difference in our community. Thank you.

Well, I was lucky to be with Vinay when he started his “pre-treatment” for his transplant. He had several days of high dose chemo and radiation. This really wiped him out. He slept most of the days and I remember him saying that “I can’t keep my eyes open”. He did develop a bit of mucus production and throat pain from the treatment that prevented him from eating as much as he usually does (his usual appetite being 5 pancakes with 3 scrambled eggs on top with a layer of aunt gemima syrup).

Day Zero is fondly known as “your new birthday”. That day was August 24, and the day Vinay received his transplant. Most people say the transplant is anti-climactic but I could sense that this day would always be very special for Vinay. His energy and the tone in his voice showed a renewed enthusiasm. The transplant process is a long one, and Vinay has been tired with plenty of body aches and fevers but this is all par for the course and his doctors state that he is actually doing extremely well.

For the good news…it appears that the bone marrow transplant is “engrafting”. His counts are showing signs of recovery and it is clear that the wonderful donors cells are now taking seed in his own marrow. What an amazing concept!!! I cannot imagine how proud the donor must feel. His altruism has helped my brother have the chance of life. I hope we will meet him someday. I cannot wait to reach out to you and your family and express our gratitude. I only wish that one day that I can be so blessed to be able to help save someone’s life in the same way.

Transplant recipients state that the road to recovery is not a sprint but a marathon. But I know that Vinay has the fortitude and energy to surmount any obstacle. Vinay and Rashmi send their love to all of you, and when he is feeling stronger he will write to you all again. If all goes well, he may be recuperating at home in a week or so.

Today is Vinay's 29th birthday, join us in wishing him a very happy day filled with lots of love and good wishes from around the world! Rashmi is making him a cookie cake today in the hospital, and the rest of us are writing him a message on "Show Support".

Vinay we love you!!!

Today is the Day!!! This the day my new life begins!!

I went through six days of chemo and radiation therapy and there were definitely some ups and downs, but I've really only had one tough day. It was after my sixth radiation treatment....I came back to the room and could barely sit up in bed. I slept the whole day and would get angry and grumpy when people tried to wake me in order to take my pills. I've never known fatigue like that and although I'm sure to have many more days like that (or maybe worse) I'm so thrilled and excited to be able to go through the transplant today.

The staff and my family have been very diligent in minimizing my risk of infection. Consequently, only family is allowed in the room and even they can only be in the room one at a time. When they do come in, they have to be gloved and where a mask. I listen in amusement to the complaints of how annoying the masks are knowing that I'll be wearing a mask everytime I go out for the next 6-8 months........ get over it guys!!

I've been keeping myself busy by watching movies, such as Nacho Libre (which I highly recommend), reading magazines, and sleeping when I can. Also, my dear friends here in Boston have provided me with a Nerf basketball hoop which has given me some endless hours of entertainment as well :) To those waiting for a rematch: watch out.....I'm making my come back in more ways than one!

As for today, the transplant itself is only a 20 minute infusion. Many people say its anti-climatic but I'm so excited!! Its going to happen in a couple of hours and I'm all jittery just waiting for the time to come. I hope this gives me a chance to recover normally and lead a normal life again. The way I see it is that with all your prayers and positive thoughts, this just HAS to work! So, another big thank you for everything you've given me. I couldn't have done without the encouragement, support, and love that I've gotten from everyone. I thank you from the bottom of my heart and can't wait to write to you all again as a new person with new cells ready to recover!!

A message to the donor:

THANK YOU FOR WHAT YOU'VE DONE! I ADMIRE YOUR KIND ACT OF HUMANITY AND WILL ALWAYS BE INDEBTED TO YOU FOR WHAT YOU'RE GIVING ME-- A SECOND CHANCE AT LIFE, A CHANCE TO BE NORMAL AGAIN.

Love Vinay

# People Registered at Vinay's Drives (counting some of you who registered on your own!) Did You Know A South Asian has a 1 in 20,000 Chance of Finding a Match? Help us Meet the Goal!

Hi guys, Vinay is finally home! Here is a picture of him....he is busy relaxing with his brother Bharath and his friends so he will post later in the week. He is so happy to be out of the hospital but he isn't feeling a 100% yet. No matter what happens this week, we're going to keep our heads up and our faith strong.

We Believe that good things are just around the corner! Keep sending positive energy his way, he loves reading the wonderful support messages! For now, I am posting this email from Vinay that he wrote to family and friends to ask help for other patients:
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Dear Friends and Family,

Thank you for your efforts in helping me (Vinay!) and other South Asians find a match. Through the amazing work that you have all been doing, many patients have contacted me and Rashmi to tell me they have *hope* because of TEAM VINAY's drives. What a beautiful thing to hear!

Some of these e-mails have been from patients in need who cannot afford treatment or others coming from India that, financially, cannot afford to travel to the US for care.

Rashmi and I are determined to do something more for other patients before TEAM VINAY wraps up with the college drives. I have a close friend named Kevin from med school who has been a huge source of support to me during this process - his own brother had AML and survived it. Kevin is a person who is dedicated to the concept that positive thinking can overcome seemingly insurmountable obstacles, so he's making T-shirts focusing on this concept, of BELIEVING.

Rashmi and I reached out to Kevin recently to ask him if he'd help us (through his iB-lieve T-shirts) with this last stretch of the campaign: if he would make TEAM VINAY T-shirts and donate *all* the proceeds to patients desperately requiring help. We're lucky to have a friend like Kevin: he agreed!

So here is the deal:

T-shirts can be purchased at http://ib-lieve.com/_frameset.htm?startPage=products§ion=iB-TEAM"

You buy the shirt for $20 and Kevin donate all the proceeds - we are still figuring out where to donate, but it will probably be to SAMAR, A3M and AADP the organizations who helped us so much during this process.

Please forward this message along to your friends and family that might be interested in sporting a TEAM VINAY shirt! And please continue to BELIEVE - in yourselves, in me, and in all those patients who we can still help.

Love, Vinay

TELL VINAY YOU REGISTERED. (click here) Show Support | Progress Updates | Donor Heroes

Register to save a life; it takes only minutes, and should you match, donation is pretty easy and fast! Click here to find drives in your area.

We're in a race against time. Help us drive as many South Asian donor registrations as possible. Click here to learn how to organize drives, raise awareness, and more.

A month ago, not many of us had heard the words “bone marrow transplant”. Now we have not only heard the words but we’ve started to understand what it is, and what part we can play in making a bone marrow transplant a success. It must be wonderful to know that there is something you can do, some control you have over someone else’s dire situation.

Even I feel less and less helpless as the days go by. It’s true that I’m not in control of many things in my life right now. For example, I’m not the one typing this message. Rashmi is recording my thoughts because, quite frankly, I can’t. Monday morning I woke up with a tingling in my fingers from the new drug and by nightfall the pain was so intense that I couldn’t sit still or stop my hands from shaking uncontrollably. I’m on a morphine drip but that unfortunately doesn’t control the pain. I have a steady stream of visitors, which helps me try to keep my mind off the pain. Since the medical team is doing everything they can for the pain, I decided to adopt a new philosophy: “mind over matter”. We can’t control everything, but we can definitely control how we feel about it. So instead of concentrating on the pain, I’m concentrating on friends and family (and all the loving messages I get on Show Support).

As far as the new drug is concerned… it’s doing its job so far. The leukemia cells have been suppressed but it’s too soon to tell anything for sure. Let’s just keep our fingers crossed and hope they don’t come back this time. If all goes well, they’ll take me in for a transplant as soon as we know for sure that the leukemia is effectively suppressed and of course, as long as we have a suitable match.

When I started writing this message, I wanted to inform you all that though we’ve been getting many people to register, my transplant search is still yielding a potential donor response rate of only 50%. This means that though my transplant search team has been calling many potential donors, only 50% are responding for further confirmatory testing.

I thought that telling you this would keep you motivated into doing exactly what you’ve been doing these past couple of weeks. However, I DON’T want to dwell on negativity. I think everyone should keep doing exactly what they’re doing because its been an incredible effot. We can get to 50,000, I feel it in my bones (no pun intended). I am continually amazed at the momentum and hope that everyone takes this educational experience to heart. If you’ve registered, tell someone who hasn’t to do so. If you’ve organized a drive, tell someone who hasn’t to do so. There’s so many things we can do! Just as a quick response to people who have been asking what else they can do: lets donate more!! You can donate blood, platelets, and ultimately become an organ donor. There really is no limit to how much we can do to help humanity.

One last thing, I have been getting everyone’s messages and I want to say something. There have been so many people in the past who have dealt with this, and so many people in the future who will deal with this. This message is dedicated to ALL the past and future survivors. I’ve truly learned from those who have been through this in the past and sometimes when I feel really down, the only thing that makes it bearable is knowing there are others who have gone through what I’m going through. It is their strength, courage, and words of determination that get me through my toughest times. I envy those leading normal, healthy lives and I can’t wait for the day when that one special person gives me the opportunity to do the same.

More important than just "spreading the word," we are really focusing on ensuring people actually GET registered. It is much easier to just commit to registering than it is to actually go and do it (even though the actual process is nothing more than a cheek swab). But we are convinced that, the more soldiers we have in the fields, the more impact we can have. Please make it YOUR business to get people to ACTUALLY register.

Thanks for your support - we couldn't do this without all of you! Let's find that match!!!

Love, Rashmi