Hello everyone!

Once again sorry about the delay in updating all of you especially after the PBS documentary. Well as most my already know since my relapse in January 2008 after BMT, I received a dose of mylotarg which placed me in remission. Since then I have been battling graft versus host disease and multiple complications that have placed me in the ICU three times now. The first time for acute kidney and liver failure and the second, third time for excessive blood loss from the gut. I was successfully treated for all ICU visits, the last stay I required an interventional radiology procedure to stop the internal bleeding. After the procedure I was transferred back to the regular floor and my diet was slowly advanced to normal! I am doing well so far and will be transferring to a physical rehab center here in Boston to get my overall strength back. I hope to be home for good in 2-3 weeks! The rehab facility will provide 3 hours of physical therapy seven days a week, quite intense but should be better for me in the long run.

While I was in the ICU a lot has happened in our community, I want to send my love to Sameer and his family. Please if you need anything let us know, let the community know, we will always be there for you. Also there is a recent article in the Hindu written about Team Sameer and Team Vinay,

http://www.hindu.com/mag/2008/05/11/stories/2008051150080400.htm

If there are any questions correspond thru www.helpvinay.org or www.helpsameer.org

Also HAPPY BELATED MOTHERS DAY!!!
WISH ALL OF YOU LOVE!
-Vinay

At this point – I’m sure that most of you are aware Vinay’s leukemia came back about three weeks ago. He enjoyed close to three months at home with Rashmi, close friends and family and was thankful for every minute of it. Shortly after the new year however, Vinay went to a regularly scheduled doctor’s appointment.

After the initial shock and disappointment, Vinay and his family resolved to fight this disease with everything they have. A week after learning of the relapse, they started a different treatment, similar to chemo, called Mylotarg. It was a rough couple of weeks and Vinay went from having a fair amount of energy to being pretty tired and feeling very weak. Although the mylotarg should have been an outpatient treatment, but due to some issues with his liver and spleen, they kept him in the hospital for about ten days. He spiked a temperature on a few of the nights – but all in all, things were okay and Vinay was able to go home and spend his time recovering in comfortable surroundings.

The last two doctor’s appointments have been very positive – no leukemic cells (blasts) and everything else has also looked good. Rashmi and Vinay are hanging in there – and waiting to hear what the exact treatment will be. It seems as though he will have a donor lymphocyte infusion (DLI) or another transplant.

He’s happy to be home and spent the weekend anticipating the Superbowl. Although Rashmi was quite upset that the Patriots lost, Vinay, with his distaste for Boston Sports, was rejoicing inside for the Giants. In fact, so was Vinay’s mom, who turned out to be quite a closet Giants fan!!

Only time will tell what comes next – but we just wanted to update everyone who have been so great in supporting them for the last year. It’s been a rocky road, but we are, as always, waiting for that light at the end of the tunnel. So please continue praying, hoping and believing with us on the next part of this journey. We appreciate all your messages, your calls, and your support. Keep at it – we still need all of you to fight this with us!

I returned to the hospital on 2/7/08 for readmission due to fevers and chills. I developed graft versus host disease in my gut. It is a little uncomfortable but manageable. My doctors placed me on steroids and an immunosuppressor to control the GVHD. This seems to be the only thing keeping me in the hospital. Once we get control of the GVHD then I will able to go home. So far my blood counts are doing well, and all of us are taking one day at a time. My medical team has not come up with a definitive plan after I get discharged but there are options. This weekend I am on what is called bowel rest, no food by mouth….nothing by mouth to be exact. I do not know if I can do it because I am always hungry, but this is thought to relieve my gut so that I can start eating solid foods. I have been on a clear liquid diet for 2 weeks now, not fun.

Once again thanks for all the love and prayers. Lots of love to all of you.

Merry Christmas and Happy New Year to all of you. I hope this new year brings heath and happiness to each and every one of you. A special holiday wish to my donor and his family. This is the season of giving and we have lots to do still. I know there are drives going on out there, but we need to do a better job spreading the word about these upcoming drives. Post the information on the Team Vinay or Team Sameer websites. Please do not stop this movement, we have done so well thus far but lets not stop. We have to BELIEVE as a community that we can make a difference, take responsibility by acting and not just by talking about it. We need to get the young generation involved, so all of you college and graduate students out there continue spreading knowledge about this cause because we are the future, lets take control of it. On the Team Vinay website we placed a short clip, that clip can be used by all and placed on Friendster, Facebook, MySpace or whatever internet avenue you can think of to increase awareness and involvement.

Like Sameer stated in his blog there are so many out there that are praying for their respective donors to come forward to save their lives (Bevin, Savitha, Dhiren, and so many more as the days go on) so lets give them a great holiday present. The holidays are a great time to spend with family, what better way to have some quality family time than starting or attending a drive in your respective areas. We cannot stop nor should we stop. I know 2007 was a great year amongst our community, but lets make 2008 even better. Let us unite as a community, as one, and help one another because in fact we are all brothers and sisters.

As for me, I am past day 100 and things are going well. My counts seem to be stable so far. At day 100 my doctor did a chimerism test, which tests for the percentage of donor cells versus my own cells in my blood…and the results came back as 100% donor cells! This is exactly what my doctor wanted to see which made Rashmi and I very happy. My energy is slowly coming back but I cannot seem to gain any weight. The weather here has made it difficult to go out and exercise but I have been lifting some weights at home. A lot of my free time is spent reading, I just finished The Kite Runner and have started on A Thousand Splendid Suns. I play the Wii once in a while, and trust me I still dominate with one eye, but after January 28th I should have two good eyes so watch out!

Before I finish this blog I would like to send my love and support to Sameer and his family. I know this is a tough time but Sameer if there is anyone that can get through this, it’s you. Throughout our ordeal I have looked to you for your optimism and faith, do not ever lose that. We are all here for you and your family, whatever you need do not hesitate to ask. So keep your head up my brother because this too shall pass. We all love you and will stand by your side.

With lots of love,

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 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 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

Good news everyone. I found a match. It is not a perfect match but it is a 9/10 match. The donor is extremely committed. His commitment is so strong that he was willing to pre-pone his stem cell donation to fit my doctor's recommendations. I can't express how much this means to me. In the past I wrote about how one of the potential donors became "unavailable" due to a lack of family support. This is not the case here. You, as volunteers and activists, deserve the credit in the change in our community's mentality and their conviction to be a COMMITTED DONOR.

Tomorrow morning I will begin my journey into the transplant process. I will be admitted and have several procedures done, including placement of 2 Hickman catheters. The transplant will be a long and arduous process but your support and well wishes will get me through these difficult times. I love reading all the "show of support" comments and it really brightens my spirits.

Many of you stay connected to me through this wonderful website. Many of you I know and many of you I have heard of through my family and friends. I will do my very best to keep you up to date on my progress. And even if I am unable to write, I will have Rashmi relay my sentiments. I hope to have new updates at least a few times a week.

Team Vinay should be proud of all it has accomplished. In the short few months that you all have been active, we have registered over 23,000 South Asians. This is clearly over a 20% increase to the existing number of S. Asians on the registry. And as you may know a few of the marrow registrants through Team Vinay drives have already been contacted as being potential donors for others in our community. Through your tireless efforts we have also achieved a few more significant goals. Team Vinay, working along with NMDP, is responsible for implementing a protocol for culturally competent callbacks for potential S. Asian donors. Another wonderful outcome is the creation of a S. Asian specific website that will serve as a sustainable informational and educational tool for our community for the years to come. The content of the website is growing and will include input from key Team Vinay members - it should be up and running next month!

This past week has been amazing. I have enjoyed my short yet fulfilling week at home, spending time with Rashmi and other family and friends. We watched Rush Hour 3, had a BBQ and played dominoes. Thank you all again for your unwavering support and well wishes. Much love to you all; Vinay.

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&section=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.