Help Vinay!

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

Vinay is profiled in an upcoming documentary that will air on PBS on April 16th.

The Truth About Cancer will feature three stories of Boston-based Cancer patients, their struggle, challenges and navigating the healthcare system to try and obtain the best type of care. The Dana Farber Cancer Center and their vast amount of resources is also featured.

Details on the program can be found here

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 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!!!