A Message From Tim

~Posted on 6/17/2005~
It was just 365 days ago, that during our routine visit to our doctor, we were informed that Pia relapsed with AML Leukemia. And her only chance for survival what to get a bone marrow transplant, from a donor from the same ethnic race (since we had no match from her family or the NMDP Registry previously, when she was originally diagnosed). With without any delight, the day June 17, 2004, shattered our hearts, while the tears from our eyes continued to flow down our cheeks.

We had no idea what to do? Where to go? Nor How to do it? We just knew that we had to find a donor that would give Pia the Gift of Life. I remember going to the pharmacy that evening to get started right away on antibiotics and Antifungal drugs…looking at the pharmacist as she was wonder why Pia needed such powerful drugs after being in remission for almost two years.

Well a year later, things are different. First we were told to spend whatever time we had left together, to take it. As a match was is not in our cards anytime soon. Well for all those institutions that told me that, obviously did know me, or what I stand for. No hard feelings, but to I write to you all in mixed emotions of happiness and sadness. You see yes, we beat the odds so far and found Pia a match, an IDENTICAL match. She survived the transplant, as today is DAY 203, although suffering daily stomach pains (that affects what she eats causes her daily pain), SHE IS ALIVE, and grateful for every breathe of air she inhales everyday.

Today is also another milestone, as Rajan is going into transplant, and getting the chance for a new life (WE ASK YOU ALL TO PRAY FOR HIN AND HIS FAMILY TO CARRY THEM THROUGHT JOURNEY). It just can’t be a better day of hope. That make 6 matches, and 6 transplants that we have been able to facilitate since the start of our campaign. We are also so proud of all of our patients and patient families. Moreover the continuing “Act of Kindness” that we receive from all the strangers that joined the Registry to become a potential Live Saver.

On this day, Pia and I also celebrate the lives of all those patients that are no longer here with us on this earth, but with us in our hearts and minds. Nitha, Sagarika, Gurdeep, Anupama, and Varun. You and all your families have become our families. Today and everyday we will celebrate what all your lives meant to us on this earth, as you continue to watch over all your families and all those patients that still need our help. There is a special song that Pia and I have for each other, however, it so fitting to be shared for all the patients in our campaign, whether they are here or in heaven.

"The Prayer"

I pray you'll be our eyes, and watch us where we go. And help us to be wise in times when we don't knowLet this be our prayer, when we lose our way
Lead us to the place, guide us with your grace To a place where we'll be safe

I pray we'll find your light and hold it in our hearts. When stars go out each night, The light you have I pray we'll find your light will be in the heart and hold it in our hearts to remember us that When stars go out each night, you are eternal star when shadows fill our day

How much faith there's Let this be our prayer in my prayer when shadows fill our day
Lead us to a place, guide us with your grace. Give us faith so we'll be safe

We dream a world without violence a world of justice and faith. Everyone gives the hand to his neighbours Symbol of peace, of fraternity

We ask that life be kind and watch us from above We hope each soul will find another soul to love

The force his gives us We ask that life be kind is wish that and watch us from above
everyone finds love. We hope each soul will find around and inside another soul to love Let this be our prayer Let this be our prayer, just like every child

Need to find a place, guide us with your grace Give us faith so we'll be safe

It's the faith you light in us I feel it will save us

~Posted on 6/13/2005~
Time keeps passing and so do the hopes and dreams of survival. So what has happened since my last posting? So many things, where do I begin. For one, we have been very focused on Pia and several patients how have been going through many ups and owns in their treatment post transplant. It has really been tough for Pia these last few weeks with having severe stomach pains after eating. Sometimes this is one of the post transplant reactions for a patient, as the whole GI Track in her body is still sensitive and fragile. In addition, providing support to other families during our journey has NEVER STOPPED. These families, whether looking for a donor, getting a second opinion, finding a transplant center which best fits. Or just someone to talk to, we still go the distance everyday.

Our families were so honored to have been able to sponsor god’s blessings in hosting and servicing (god’s blessed food), on a very religious and auspicious day (Ramnami), at one of our most dedicated temples in New Jersey (Durga Mandir). This blessing was such a great opportunity to provide the post-ceremonial meal for a 1000+of some of the greatest volunteers and potential donors that believed in us, and joined our campaign. Most rewarding was the opportunity to have the elders in the community who helped us, meet Pia for the first time (for a brief moment, as Pia couldn’t expose Pia to large crowds, in the attempt to prevent any infections).

As some may know, in our Hindu culture, getting blessing from elders, can be compared to getting blessings from God. So many elders were proud of Pia and the cause for not just saving Pia’s life, but for potentially saving other members in the community too. What a REAL honor that day was for us.

Then there was Pia’s birthday, almost a year ago, we were told that she may never see her 30th., birthday and enjoy whatever time left you have with Pia. Well, we listened to those individuals, respected what they said, but would not accept their outcome. Almost a year later, Pia is here surviving everyday, continuing to help us advocate for all the other patients in need. Some say it wasn’t her time, others say it was luck to get a match, we say it was determination and the willingness of a community to not give up the fight for her life. The birthday was a real treat, as so many members of our family were in tears to see Pia make it to that day.

And the lovely emails we still get everyday, just confirms our original notion of if you educate humanity, humanity will rise to the occasion and help to save lives. Thank you to all again, for these wonderful wishes and cheery messages you send everyday. It is the consistent support of all of you that makes our commitment to this cause even greater.

With every cause there is such greatness to people in need, get the help they need. With that in mind, I would like to congratulate the Vyas family for all their handwork and dedication to Rajan. Yes, Rajan has a MATCH!!! He will be going into transplant June 17. We are ever so grateful to the wonderful mother who had the foresight to donate her cordblood to the National Cord Blood Program in New York. I want to personally thank Dr. Rubinstein and Clan Stevens for personally making sure this unit was ready for Rajan. In addition, very grateful to Hiral (Rajan’s aunt, who was our daily point person on this campaign and worked with us to ensure we found the right match for Rajan…Hiral what can I say you are AWSOME!!! Never stop the drive and commitment you have to Rajan). This Friday June 17th., please continue to pray for Rajan and his family, as they enter the next phase of their journey.

Lastly, I would share my heartfelt condolences with Deepak and Ramya, for the loss of their beautiful son Varun. You see, Varun was a very inspirational little boy. Upon starting a campaign for Pia last year, he and his family were one of the first patient families to join Matchpia’s awareness campaign. From the onset both our families bonded and relied on each other for support through this journey.

What can I say, Deepak, you and Ramya showed all of us in the community the importance of what parents will do to fight for their precious child. You fought from day one to the day Varun commenced his journey to heaven. I honor you both for sharing all your experiences with Varun’s treatment through your website. As we discussed, there is nothing I can do or say to bring Varun back in you mind, but I will tell you, you’ve made so many parents hug their children and understand how valuable life really is. Some say when an adult passes, their memory stay on the gravestone, but when a child passes, their memories don’t stay at the gravestone, but in the hearts of all those who loved them.

Deepak, we will never forget the love and awareness Varun brought to all of us, nor will Pia and I forget all the phone call we’ve had with you and Ramya the last 10 months. We join you two in celebrating Varun’s life for the strong happy boy he is. These are the experiences in life that will make us continue to bring further awareness to this cause, while helping to save lives for all those patients in need of a transplant.

~Posted on 5/06/2005~
The days carry on, and time has a funny way of just continuing without the consideration of all those who are running out of time. Thus far, our journey has been a remarkable experience full of so many ups and downs in life. One thing fortunate is all those well-wishers who still continue to pray for our journey in life.

It’s interesting to see how life and death, has a way to help prioritize what really matters in life. Some say it is a second chance, others say it’s a gift from above and there are some others who say it’s a miracle. Whatever it may be, we are grateful to all those who in someway touched us all the way, and remain to. Hence, I think that is why we continue to touch all those families that ask for our help (as we know what it was like, when there was NO ONE to help guide us as we started our journey).

Today is Day 161, Pia is doing well, as we still continue to integrate back to where we left off before her transplant in Seattle. The doctor appointments are still ongoing, and various tests are still conducted weekly to ensure the donor engraftment is still functioning the way we expected. It has been so remarkable to see Pia so supportive of the cause, and understanding all my involvement. You see there are a lot of calls in the late hours of the night, or during dinnertime or just about all hours of the day from patient families in need (whether they need help with their treatment or they just need someone to talk, when things are looking bleak…from all around the world). I just realized, that our involvement and dedication to this cause, are just part of our life’s now, it’s totally natural just to have conversations with patients all day on donor search and the transplant process (weird huh? somehow we’re getting accustomed to it).

It has been so great to know that there are 5 patients from our campaign who we’ve worked with to identify donor matches (whether it be bone marrow or cord blood). Four of those patients have had a transplant, and the last patient will go into transplant on May 11th. We are so proud to work and empower these families to go the distance for their loved ones. As for each family that goes through this process, they realize the gift of knowledge that was bestowed upon them, and it is the same knowledge they too will bestow upon the next family in need. Eventually, this cause will continue to thrive on the all the forefronts of every community, in every country. As a result, we will continue to increase and diversifying the pool of donors in all the Registry’s around the world, which will provide the opportunity for donors to have EQUAL ACCESS to life saving transplants everywhere.

~Posted on 4/22/2005~
Going from watching the boats come in and out of the Puget Sound in Seattle, to watching the squirrels and chipmunks scurry through the grass in our backyard, back in the east coast, time doesn’t stand still nor does it forgive those patients who are in need of a donor match. The only thing that is in favor of a patient is the kindness and generosity of an understanding community. A community that will embrace those that are in need of life.

After tremendous outreach to the community, we were able to achieve that level of understanding for Pia. Today, we continue our campaign to further educate our community of the importance of being a committed donor for all those patients that are still in need.

Today is day 147, and Pia is continuing to heal and get readjusted to the east coast. As strange as it is, any little deviation from being a normal person, just alarms us. Anytime she sneezes of coughs, we always think twice weather if it’s just a sneeze of cough, or whether it’s something serious (like Pia’s immune system being compromised). With this in mind, we continue to support all those families that seek our help during their journeys through finding a donor, and having a successful transplant.

We ask everyone to support all the families on our website, as they all need the same chance Pia got (the same support the community provided). I ask everyone to pray for Little Varun, as his health has suddenly started to deteriorated in the last few days (although he is starting to being heading back in the right direction, his body is under severe stress), while his parents fight for his life (Deepak & Ramya, we are all praying for you, and proud of all the hardwork you’ve both done to get Varun to transplant). Please continue to pray for Varun in his time of need.

Then there is Renu, who has done so much for our community as a Senior UN Officer (she played a significant part in the aparti movement in Africa). So far away from her home, and a way from her family and friends, she fights hard to make it to another day of hope. Renu, you can do it…you have the determination it takes to go the distance. Please continue to Pray for Renu as she fights to get into remission.

Also, there is a very special little boy (Rajan), who just turned seven days ago, and has inspired our community to come together very quickly to get donors tested all throughout the country. Although we have not meet Rajan, we know his aunt Hiral (doctor herself), who we’ve had the honor of working with the last several weeks. Rajan, our team is very proud of you and your families for helping our community to further bring this cause to the forefront of society at large. Please continue to pray for Rajan’s safe passage to remission, and finding a donor.

~Posted on 4/15/2005~
Can a community come together to make a difference? Does it matter what religion or gender you are? Why not make a difference to someone in need. Those were the questions that started my day today. Wonderfully enough, I received an email from a young woman last night, who I actually meet last year at a donor drive in New Jersey. She had seen us at about 5 events (in two different states), last summer, before got the courage to come forth to get tested (It was almost like she watched and watch, until she became comfortable with knowing that it doesn’t hurt, a it might actually save someone’s life). After seeing so many people getting tested, she noticed everyone had a smile in their face afterwards (it appeared to her that everyone had a sense of accomplishment, as they actually may be able to save someone’s life).

Finally, the day came (India Day Parade), where she stood on line and filled the “donor form”, and proceeded to get her blood tested. “It was simple, and now I know how empowering it could be”. Proclaimed Geeta. The story doesn’t end there, 8 months later, Geeta got called to be a potential match for a female patient with leukemia. “I went in to the donor center to give another sample of blood, and really see if I am a match…I hope I am…”, said Geeta. She concludes, by saying “Good bless you and Pia, for allowing me the honor of potentially saving a life”

I thank you Geeta, as we are all proud of you for sharing your story with our team. It is not always one can be so selfless in saving someone. As Geeta shared her story with us, I encourage anyone who has been contacted by the NMDP or Donor Center contact us, and let us know if you have any questions about the matching or donation process. Sometimes that will be the only way we know how many matches we are getting in our community.

Today is Day 142, and I really feel good knowing Pia is doing ok (she is slowly getting used to the east coast again), and everyone around us have been so supportive to the cause. It is very evident to me, more and more people are getting to know about this cause, hence, more people have been questioning how important this cause has become to our community, and how they can help. Whether it’s donating volunteering time, monetary donations, donation of services (like donating printing of posters and flyers or refreshments at drives), the word is getting out there, and the momentum is getting greater everyday… So to everyone…thank you for spreading the word, getting tested and doing drives…there are a lot of other patients who still need our help.

On another note, I would like to share some great news about our good friend Erin Zammett (editor at Glamour). Yesterday was her book party in New York, and what an event it was. There were some many of her dear friends, collogues and family at the event. Erin had CML, and is now in complete mission (awesome!!!), thanks to a wonder drug called Gleevec. It was an exciting evening to meet all the editors at Glamour (especially since they have been following Pia’s story, and very supportive to our campaign). Congratulations Erin, we know your book will be a big success!!!

Lastly, PLEASE watch Good Morning America (GMA) on ABC Network next Monday April 18th. (Yes, it was rescheduled again…please check the website to see the exact time). And don’t forget to send GMA an email, letting them now that how important it is to see stories like this, especially, since they deal with the severe health disparities of the minority community. Send your comments to: NETAUDR@abc.com

~Posted on 4/13/2005~
This weekend, I was reminded the importance of why we give to those who are in need. It was the Bat Mitzvah of a dear former student of Pia’s (and an equally important event for that dear student’s mother and family), who all wished so hard for us to be at this special occasion. Pia worked significantly hard to focus and gathering all her strength for this day, as this day not only signified a right of passage for her former student to enter adulthood in the Jewish faith, but also a significance for Pia to be there on that day (as this was one of her dearest students she had as a second grader).

It was amazing to see the pure enjoyment this now soon to be adult displayed, and her enthusiasm in giving back to society, and helping those that are less fortunate. She recited several quotes during her presentation to the audience, as she entered her adulthood experience (“It takes courage for a man to listen to his goodness and act on it”-Norman Cousins, and even honored Pia for all her teachings, and quoted Margaret Mead “Never doubt that a small group of thoughtful, committed citizens can change the world: Indeed it’s the only that ever does” ).

As I watched tears running down Pia’s eyes, knowing how proud Pia was of her former student (now dear family friend). It was amazing to see an example of a child, entering the “Right of Passage”, knowing the importance of giving to those in need. We are proud of you Hannah…and both Lois and Stuart for raising Hannah to appreciate all those in the world.

Today is Day 140, and Pia is fighting hard to regain the confidence of a patient, going back to a place that was once home. It is very tough and a challenging to know that you’re going to be safe, away from the doctors who cared for you and gave you safe passage through your transplant. So with great gratitude and strength, we continue to stay cautious and focused as continue to “travel this road less traveled”.


~Posted on 4/7/2005~
The phrase “Time is of the Essence”…what does that really mean? So many patient families end their message of assistance with that phrase. I remember myself stating the same phrase when I started this journey for Pia’s donor search. Well the only thing I can interpret, is that time is never at a stand still when it comes to cancer. We as patient families are in shock, once we realize our loved one has cancer, and the only way they can survive, is to find their donor match. That’s when it hits home, what do we do? How do we do it? and now what?

Those are the same questions I asked last June. But back then, there were no answers, and the landscape was unchartered. We had no choice but to rely on what we were told, and just wait and see, when a match would come. That’s when it hit our team, a match will never come to us, and we had to do everything, to make it come to us. Whether, it’s spreading the word in the community, doing donor drives, or finding out all the options for treatment at all the possible transplant centers. We had to be proactive, rather than reactive.

That’s what we had to do, and that’s what we did for Pia, and that’s what we continue to do for all the other patients who seek our help. Soon, this uncharted territory began to get mapped: we made relationships with the National Marrow Donor Program (NMDP), Donor centers and Minority Recruitment Groups, the media, the press, the transplant centers, the doctors and my most importantly the patient families (we had no defined support structure…hence, that’s what we had to create…patient families coming together…sharing war stories and seeking advice from each other). This is how Matchpia.org was born (a patient family sent us an email last week, in thanking us, for guiding their treatment “You guys have become the authority in the South Asian Community on this topic” said the patient’s father. My answer. “I don’t know about being the authority, but we had to learn how the process worked, and learn fast, in saving Pia and the other patients life’s”). And it is this “Time is of the Essence”, concept that still radiates within us, within every new patient family that seek our help (only a patient family really can experience the frustration and helplessness that comes with the unknown of finding a donor).

Today is Day 134, and the next leg of our journey has begun, Pia is back HOME. Some say, “Home is where the heart is”, I say, home is what makes you feel comfortable, a place where you know what to expect, and a place where the heart starts to heal in the harmony of family and friends.

Before leaving Seattle, we received the second greatest gift next to our donor, we got to meet two of the most wonderful people I have ever met in our lifes…two of the most important people who made “unrelated bone marrow transplants” possible. Yes, it was the Noble Laureate prizewinner, Dr. Donald Thomas and his wife Dottie Thomas, RN. They were the ones who persisted and mastered the successful science of this transplant. What an honor it was, to spend time with them, and personally thank them for contributing to society. They were very impressed with our efforts in bring awareness to the community, and registering more than 16,000 donors to the NMDP Registry. We were able to give them a preview of our new Public Service Announcements (PSA’s), while they pondered in great excitement to know that we have carried their mission forward to help bring further awareness in the importance of recruiting donors (especially the minority communities), to get tested for the NMDP registry (Dr. Thomas was one of the founders of the NMDP Registry). Again, Thank you Dr. Thomas and Dottie Thomas, for everything you have done in giving all these patients a second chance at “Life”. What a way to end our journey in Seattle on a high note.

So the day comes to leave, we continue to pack until the minute we left the apartment. As a last minute surprise, we were so happy to meet with a special patient family from Seattle. It was Gurdeep’s parents Mona and Karwarjit (two parents that cared so much for their child that they went to the greatest length to doing whatever it took to try to save their son’s life). You see these were the most exemptlatory parents I’ve ever met in our South Asian community. They fought very hard, every time the doctors said it was not possible, they found a way to make it possible, every time they were told the end was here, they helped Gurdeep, make to another week. What strength and character these parents taught us, in their everyday struggles to save their son. In the end, Gurdeep moved on to his next life in heaven, while we all try to move on in our life’s remembering what strength and sheer tenacity for life, he bestowed in all of us.

I will tell you, Gurdeep was a pleasure to talk to (he was so intelligent and cunning for a child, you can tell he know what was going on, but wanted everyone to stay strong, and remember him for his laughter and wonderful personality). Pia was so touched to talk to him before his last days here on this earth. The biggest guilt during our stay in Seattle, was keeping Gurdeep’s passing away from Pia (as everyone thought it would affect Pia’s mental state in healing). This was so hard for me to do, as I knew she would of wanted to be there for Mona and Karwarjit in there time of mourning. So the night before I told Pia, as I watched her in shock and sadness, wonder why Gurdeep didn’t make it, and she did. I explained to her will never know, but we shall never forget him and his family’s determination, for all they did in sharing Gurdeep with us.

Mona/Karwarjit, we will never forget both of you two, nor Gurdeep, as you all taught us so much about the love between a child and his parents. As we continue to help patient families, we will always remember what you’ve both taught us about fighting for whom you love. Every parent will learn from your example.

Later that morning, as our flight took off, I can see the sadness in Pia’s eye’s as we left our home away from home for the last 5 months (it’s often very difficult for a patient to leave the comforts of a safe zone). For this was the place that gave us a new Life. The flight was long, and shaky, but we made the best of the situation, as Alli was in the cabin with us. She was a hit, actually the flight attendants loved her, and couldn’t resist but to keep rubbing her ears. As hour eight came, the flight was stating to land (you can see the New York City skyline, and all the various bridges lit up in the night light), while Pia grasped my hand, as the tears ran down her eyes “We did it…we did it...I made it…I’m alive”, while the flight landed (you can read the white lettered sign “Welcome to New York” in big letters. We hugged each other with Alli in the middle, knowing that this leg of our last journey ended, and the next leg of our journey began (the next 1 to 5 years calls for a lot of caution as we are definitely not out of the woods yet).


~Posted on 3/29/2005~
Dear Matchpia.org Supporters,

I would like to take this opportunity to update everyone on Pia’s condition and other Matchpia.org initiatives. To start off, I would like to commend our donor in the UK, for her “SELFLESS ACT OF COURAGE”, and warmth in giving Pia a “SECOND CHANCE at life”. In reality, she also gave all of us a “SECOND CHANCE” to get to know Pia better now, and in the years to come. With this, I am happy to share GOOD NEWS, Pia will be discharged very soon (in the next week or so), from the care of the Fred Hutch Cancer Center in Seattle. Yes, that means we are heading home to pick up, where we left off in our lives (although, we are not out of the woods yet, we will continue to be cautious from keeping Pia infection free for the next 5 years).

There is additional the GOOD NEWS, about one of our team members, and South Asian patient, Meagan Jacob. Meagan has a match, and has undergone her transplant in Houston, Texas. I am happy to report that Megan is doing quite well, thanks to the efforts of our community coming together to support our national campaign. We are very proud of Megan and her family in continuing to fight so hard for her life.

Then there is Varun (we rarely call him “baby” Varun, as he is now one years old, and has grown up in front of our eyes, teaching many of us adults how precious life really is), who is STILL DOING WELL, and STAYING the COURSE to recovery. We are very proud of Deepak and Ramya (his parents for continuing to fight for his recovery).

These are some of the great updates of our patients who are still on course for recovery. However, I would like to stress the deep IMPORTANCE of all the other South Asian and Minority patients who we work with everyday, that are still in need of a donor match. We as a community have risen together to help Pia, Megan and Varun, and we cannot FORGET the other “FACES of HOPE”, that still need our help. It is this reason, both Pia and I , along with many volunteers, continue this cause to help those in need, as we were once in their same shoes looking for a match.

Our campaign has continued to grow more than ever, we are getting about 6,000 hits to our website everyday (from various states in the United States, and over 38 different countries around the world). We still need all your help…please get tested to be a potential donor match, continue to tell everyone you know the importance of getting tested, and help us conduct donor drives in your areas… With everyone’s’ help we can make the National Donor Registry better represented for South Asians and Minorities by increasing the chance of donor matches foe every patient in need.

Thank you all again, for your continued support in saving LIVES in our community.


~Posted on 3/10/2005~
It seems like everyday becomes clearer and clearer as to what needs to be done, to bring further awareness of this cause, however, for some patients, the time is often the factor that limits them for survival. So many patients are just too scared and unaware what the options maybe for survival. In the last 9 months of this journey, I have learned so much about the disease, treatment options, doctors, medical institutions, government, media, our community (complete strangers that just took a chance on us), and most important, the Heros…the patients/patient families (it is what brings us all together, in doing what we do). Not a day of rest has gone by, for me and so many other people, who just throw their lives into wanting to eradicate the pain of not having a donor match, especially, when you have no choice, but to have one. Well today is DAY 106, and the journey still continues to another day of hope, another day of Pia and all the other patients just fighting for their lifes.

Pia’s CMV is still present, and alarming for us to be very cautious of the affects of the treatment. It’s so interesting to see that sometimes the discipline of medicine is so hard to be predictable. Being on Ganciclovir for 5 weeks, has caused Pia’s counts to be low, so we may need to change to a different drug, that may not affect her counts as much, but still be strong enough to enable the CMV to be dormant in Pia’s body. As of now, her body is still like an enfant with no immunizations (very susceptible to infections disease).

It’s amazing to see the smile of courage on her face everyday, knowing that deep down inside, we don’t know what tomorrow brings. It’s this strength as a caregiver that makes me “Stay the Course” in working with the doctors and nurse everyday, to challenge the notions of “Have we done everything in our power?” ….”What else can we do proactive?”…”What are the options?”

So the days go on until we get more results that give us an indication that it’s OK to go home. A lot of our supporters have asked “You did it, 100 Days have gone by, Your done right?” Unfortunately, 100 days is the standard duration for stem-cell transplants, but to be on the safe side, it may take more time and patience to know that this leg of the journey is over, and the next step of the journey begins (usually another 2 to 5 yrs, before a patient is really out of the woods).

So yes, we made milestone of 8640000 seconds, 144000 minutes, 2400 hours or 100 DAYS, but the journey continues, the treatment continues, and so does the awareness and hope for everyone to find a donor match. As we continue to spread awareness and education of this crisis in ours and all the other minority communities, I ask everyone to keep spreading the importance of this cause to everyone you know, as knowledge will be a determinate to ignorance.

I would like to thank you all for all your lovely letters and emails, care packages, and all the love and prayers you’ve all shared for us and all the other patient families. It’s truly remarkable how so many people can come together from various races and various places to help those in need. I have never been so proud of my community, and hope we can all foster this sense of pride in everything we do make this world a better place.

~Posted on 3/3//2005~
Our faces glow, as we learn the news that Pia’s donor cells are engrafting at a very efficient rate (99%). The doctors have been so helpful in making sure we have understood the results of this journey everyday. Moreover, our head nurse Pat (who has been here for 30 years, and even witnessed the first unrelated bone marrow transplant in Seattle), who just constantly goes that extra mile everyday to make sure our journey here in Seattle goes smoothly.

Pia’s overall counts are looking good, however, we still need to ensure that her T-Cells (the cells that help to fight off foreign bodies that enter the bloodstream), counts are at an inappropriate (so far we are baffled that they are not), level. It troubles me to know to that we are in a wait and see state, especially since day 100 is coming around the corner (tomorrow). Other this big mystery, everything is going good, Pia is eating well, doing a lot of yoga, talking a lot of walks and spending time meditating and plying with Alli.

Today is Day 99, and it seems like this cat and mouse chase never ends, you help one patient family and do a search for a match, a donor drive, help them find doctor or transplant center and most important and time consuming of all, is to be there for them everyday as they go through their ups and downs (be cause you’ve witnessed those same feelings yourself during your journey). Call it a Task Force, call it a Support Group, or call it for what it is, Patient Families helping Patient Families…..that’s what a Community has become. And that’s what over 600 of you “direct volunteers” have helped us to create.

As for me, it seems like sleeping has become like an annual holiday like Thanksgiving or Christmas. Sleeping has come down to 3-4 hours a day of just closing my eyes and waiting for the sun to come up. I’ve noticed that the number of hours in a day are just too short, as compared to all the work we need to accomplish in helping all these patients. Someone said to me, just “hire a few people”…unfortunately, there isn’t enough funding to pay anyone, as I and my family have already spent over $200,000 to get the awareness out. And you can only ask people to volunteer their time and heart to the cause.

So the journey continues … as we hope to get some more news on for Day 100.

~Posted on 2/15/2005~
How life changes in matter of months, to a matter of days. Sometimes as we look into our lives, we can see so much turmoil and uncertainty, that the outlook on the future looks so bleak. And it is with this uncertainty that either makes us weaker, our gives us the hope to carry on and survive these challenges in life. A brief reminder on how life has changed our perspectives, in seeing what really is important, and how life needs to be reprioritized.

Yesterday was a remembrance of all the hope that carried us through finding a donor, to us continuing to recover today, tomorrow and into the next five years (5 years is usually considered the milestone, where a patient is considered cured). In addition, yesterday was Valentines Day (a day for the exchange of tokens of affection), for of us, and everyone else around the world, who celebrates it. I can tell you, that in the four Valentines Days I spent with Pia, this was by far the “Bestest” ever. This year we are grateful for all that life brought us. For this year, we share Valentine’s Day with a new person in Pia’s lives, as well as our new relationship with that someone special (the selfless donor, who saved Pia’s life). So whoever said “Two’s company and Three’s a Crowd”, must of forgot, that rule doesn’t apply to a patient who receives stem cells from a donor, as a donor can never, or ever be looked at, as an outsider to a patient, or patient family.

Although the day was well spent at the clinics getting blood tests, a bone marrow biopsy and skin biopsy, Pia was able to get home to get some rest before we started out for dinner. Dinner is always a limited choice outside the house, as you have to be very careful to go to places you know the food will be prepared from fresh products, as well as knowing that the food is handled properly and cooked fully. So going to new places on the whim is something that just doesn’t happen in our lives anymore.

Dinner was short, but tasteful. I think that we were both happier to be home, just resting watching a movie, knowing that Alli was nearby. So off we went home and exchanged our Valentines cards and gifts for each other (we both know, that the gifts were just a token of our gesture for the celebration of Valentines, but know that this day was just another day of celebrating our love for each other).

Before you knew it, the night just turned into a regular night of taking medicines and watching Pia fall asleep to the beeping noise of her hydration pump. So this was the closure Day 82.

~Posted on 2/11/2005~
Live is only as easy as we take action on. The difference between reality and perception is sometimes too great to comprehend. Sometimes when you question things in life, also, remember to question your medical treatment. Have I done everything possible to ensure all the answers given to me are accurate and the best possible solutions?

That is often the case for all of us trying to find hope in this journey for a donor. Today is day 79, and it is these questions, I ask myself as a caregiver everyday. It is these questions I ask every patient family to ponder on, for it could mean the difference between doing all you can and going the distance, vs., being complacent and accepting a gloomish outlook of the disease.

The CMV is still present in Pia, and still a concern for all of us. Watching her take the high dose of Ganciclovir, gets a little troubling for me, as Pia gets very tired and sleepy (reminds me of the days when she was on very strong chemo doses…it’s sad to see someone you love so weak and tired). This week has been very busy, as Day 80 is a big milestone for a transplant patient (as they start to get a lot of tests done, before the 100 Day release date). Hopefully this weekend will bring some rest for Pia.

Interesting milestone, as of today, our global cause has involved talking to patient and patient families in 19 different countries in 5 different continents. As they say in the Wizard of Oz, somehow, it feels like “we’re no longer in Kansas anymore”. Cancer is the same wherever you go, it’s the treatment that’s different. As we learned, cancer doesn’t discriminate by race, but it’s the treatment that discriminates by race and socioeconomics (clearly, one can see the difference between the haves and have-nots). So how does the minority communities compensate for these deficiencies? Knowledge…it’s the thing that always sustains us , and allows us to be part of an “equal level playing field”, in any culture.


~Posted on 2/5/2005~
As the clouds cover the water misty sky of the Puget Sound, you can hear of the commuter’s boats blowing their horns as they dock into port for the next set of passengers arriving to work in Seattle. It’s going to be a dark gloom day that will continue throughout the weekend. Today is DAY 72, and continue to stay focused during the remainder of our journey in Seattle.

Yesterday, the SCCA determined that Pia needed to start a new drug called Ganciclovir (an antiviral drug which slows the growth and spread of cytomegalovirus –CMV), to treat the new virus called CMV found in Pia’s white blood cells. You see, prior to transplant, Pia went under a very rigorous conditioning program here, where they learned everything about her body before the transplant (they established a baseline), and if any viruses existed, they would treat them prior to transplant, hoping to prevent and further complications during and after transplant.

It’s actually very common to have CMV as a normal person (over 505 of the population in the United States have CMV). The only thing that makes us concerned, is that Pia’s immune system is still suppressed so her donor cell continue to engraft. So if the CMV isn’t treated, Pia can get an infection and be really endangered for survival.

The doctors are cautious of this new finding, but know it was a matter of time before she would get CMV (we know Pia didn’t have CMV prior to transplant, but her donor did, so it passes onto Pia). By all means, we are not upset at our Donor, it’s a very common to have CMV. Actually most people get it very young, usually when they are exposed to a other little kids, who are sick in a daycare setting.

I must say though, we are very lucky to have some of the best health care professionals at the SCCA. Out lead nurse Pat, has been here since the first “unrelated transplant” in 1979 (when doctor Thomas and his team conducted the first transplant of this kind, right here in Seattle), and not only takes care of all our medical stuff, but treats us as, her own family. Our doctors her are also very attuned to every little thing that needs to be addressed (attending doctors rotate one month at a time).

One of the coolest things I heard during this whole treatment, was when one of the nurses yesterday, told us that the attending doctor was reviewing every patient in rounds, and when it came to Pia, paused and reminded the whole team, the importance of how patients really fight for the right to survive. He was so touched by the efforts it took a community, to find Pia an identical match. He mentioned “It took the Heart and Soul of one man in Love with a woman, to start a campaign which still continues far after her match and transplant”. He went on about what determination and strength it took this young man to overcome so many individuals that told him it could not be done, let alone, increasing the chances of finding a match for all the other South Asian patients lives’ that can be saved from this campaign. After everyone listened in total silence, he concluded, that it is this “Heart and Soul” that we should learn from, and carry on in everything we do as medical practitioners.

I watched the nurse tell us this, as I saw tears in Pia’s eye’s drip down her faintly red cheeks, while the nurse said, “You’ve set a good example for all of us to follow”. In sheer gratitude, I smiled and was so touched that one of the world’s leading doctors in transplants really took the time out to understand our community’s plea for help. Not only is he one of the world’s best known doctors, but one of the founding fathers of the NMDP. Thank you John, for all your guidance and support, you’ve given us from the first visit at Fred Hutch, to present day, for all your help and support to both of us during this journey. You have everyday, demonstrated your deep understanding for what patients/families really go through, while enabling us to better understand our treatment.

That evening, as I was really thinking about what “Heart and Soul” meant, and it reminded me of Billy Joel’s song “All about soul”. I realized that Pia is really my Heart and Soul, and the struggle of this journey gives us even more strength everyday to go on and continue to bring further awareness of this cause. I often think, maybe it is the Heart and Soul that keeps me focused everyday and night (as I strive to get more than 4 hours of sleep a day).

It’s late (1:00am), in the morning, and Pia has fallen a sleep the forth night in a row with her hydration pump on (it usually make an awful loud beep when all the fluids are done). As the light blinks and beeps, it’s usually my cue to disconnect the hydration from her Hickman catheter, and flush both her lines with saline and heparin (keep it very sanitized and infection free).

As I looked at her innocent face, in deep sleep, I just started remembering the words to Billy Joel’s song…

She waits for me at night, she waits for me in silence
She gives me all her tenderness and takes away my pain
And so far she hasn't run, though I swear she's had her moments
She still believes in miracles while others cry in vain

It's all about soul
It's all about faith and a deeper devotion
It's all about soul…

She turns to me sometimes and asks me what I'm dreaming
And I realize I must have gone a million miles away
And I ask her how she knew to reach out for me that moment
And she smiles because it's understood there are no words to say

It's all about soul
It's all about knowing what someone is feeling
The woman's got soul
The power of love and the power of healing…

There are people who have lost every trace of human kindness
There are many who have fallen, there are some who still survive
She comes to me at night and she tells me her desires
And she gives me all the love I need to keep my faith alive

It's all about soul
It's all about joy that comes out of sorrow
It's all about soul
Who's standing now and who's standing tomorrow…

It is this Heart and Soul in all of us, that keeps all of us going the distant, and gives us the strength to survive.


~Posted on 12/31/2004~
”Oh hark” , I think I see something, yes, it is…here comes the sun. Better late then ever, as the year comes to an end, the sun’s rays shine upon us for the last time this year, let everyone say good bye to all that warmth of the year, as we look forward to new beginnings in the New Year. Today is DAY 37, and it is so strange not to be with our family, in our home, in our part of the world, to end this year of challenges, hope and dreams…to the notion of a second chance at LIFE. I guess it doesn’t really matter whether we’re here or there…as long as we are together spend every precious time together (that is what our DONOR has afforded us…the chance for us to do all things one takes for granted, not ever facing this disease).

So it is this New Years Eve, I take the time to be grateful to GOD, my family, friends and COMPLETE strangers whom become the thick branches of our tree of HOPE. It is these branches that not only help us to grow, but help us to spread our message all throughout the US and the world. For it is my heartfelt thanks that immeasurable gratitude I take this moment to convey my indebt ness to you all.

-All mine and Pia’s family, friends and colleagues, who sacrifice every waking moment the past 7 months, to focus on find a match (all sacrificed birthdays, anniversaries, weddings, bridal showers, baby showers and all the other parties), for Pia and all the other patients.

-All the volunteers all around the US and around the World

-My Team Leaders in New Jersey/New York, Connecticut, Atlanta, Chicago, Boston, Virginia, Maryland, Washington DC, Florida, Tennessee, The Carolina’s, Alabama, St. Louis, San Jose, Freemont, LA, San Francisco, Dallas, Houston, Colorado, Louisiana, New Mexico, Massachusetts, New Hampshire, Maine, Rhode Island, Illinois, Ohio, Michigan, Minnesota, Kansas, Washington, Oregon, California and all the other States and Cities that worked with our Team on this campaign. And all the other countries around the world that “Spread the Word”

-All the Donor Centers of NMDP, several of the cooperative leaders of NMDP, and certainly, some of the supportive Board members of the NMDP, who embraced our efforts

-Our South Asian Celebrities, who have become ambassadors of this cause:

Manu Narayan - Lead actor from the award winning Broadway show “Bombay Dreams”

Ayesha Dharker - Lead actress from the award winning Broadway show “Bombay Dreams”

The Cast of Bombay Dreams – All the wonderful actors and actresses

Kalpen Modi - Talented South Asian actor, from movies like: Harold and Kumar Goes to White Castles, American Desi, Van Wilder, Malibu’s Most Wanted, Love Don’t Cost a Thing, A Lot Like Love and others

Parminder Nagra - Talented South Asian actress, from the smashing hit move “Bend It Like Beckham” and NBC’s “ER”

Ravi Kapoor - Talented South Asian actor, from NBC’s “Crossing Jordan”

Anan Jon – South Asian fashion designer to the “Stars”


-The media, ABC: Good Morning America with Diane Sawyer, CNN: American Morning with Sanjay Gupta, WNBC NY – with Vivian Lee, WABC NY – with Bill Ritter, WPIX NY – with Connie Chung and other South Asian Networks (TV Asia, VDesi, AVS, Chitrahar TV Chicago)

-The newspapers – Krista - Associated Press, NY Times, NY Post, New York Newsday, Washington Post, and hundreds of local market newspapers.

-The educational/government organizations – Who welcomed and endorsed our cause, NetIP DC, South Asian Associations in colleges and Universities, Congressman Rothman, Congressman Pallone, Senator Corzine, and Governor McGreevy.

-The NMDP Reauthorization Committee – Who have embraced our cause, and taken the time to receive the feedback of the South Asian Community, as it relates to funding additional outreach programs:

Senator Judd Gregg (NH) Senator Bill Frist (TN)
Senator John Ensign (NV) Senator Lamar Alexander (TN)
Senator Richard Burr (NC) Senator Johnny Isakson (GA)
Senator Jeff Sessions (AL) Senator Edward Kennedy (MA)
Christopher Dodd (CT) Senator Barbara Mikulski (MD)
Senator Patty Murray (WA) Senator Hillary Rodham Clinton (NY)

Together as a community, we have accomplished what some people might refer to as history, bringing so much awareness to a cause of SAVING PATIENTS in need, a cause that is so lightly discussed among our community and government leaders. I don’t personally call it history, but our commitment and devotion for Humanity. Our strategy was to launch a very effective campaign that can touch everyone emotionally, for the FIRST TIME in the history of our community, religion or gender didn’t matter anymore. Whether you are a male or a female, a Hindu, Muslim, Sikh or Christian in our South Asian community. It didn’t matter anymore, as the barriers of religion, needed to be broken-down in order to save lives in our community. Now the only thing that matters, is the compassion for HUMANITY, and all our commitment to sustain it.

I am very proud to be with such an empowering community of individuals, and it is this magical feeling of greatness that keeps Pia and I, so focused in keeping this cause alive for all those patients in need. I slightly pause for a moment, as I can remember 2004, “As it was best of Times, it was the worst of times, it was the age of wisdom….” The description I always remember from Charles Dickens “Tale of Two Cities”. The Best of Times, as we had so much fun planning our wedding and being with friends and family, the Worst of Times, as Pia relapsed from AML, and had no other chance of survival, but to receive heavy chemo therapy and with anxiously for a donor to be found, the Age of Wisdom, as everyone learned the power of Humanity. The notion “If you educate Humanity, Humanity will rise to the occasion”…this campaign has demonstrated that once people were educated on what a stem cell/bone marrow transplant was, and the process involved to save a LIFE…the choice was simple.

It is often asked of me why we continue this journey of bringing further awareness of the importance of education our community, and other minority communities. And I think the answer still remains the same, “Complete strangers took a chance on us, why shouldn’t we take a chance on complete strangers who too are patients in need “ And that is what has happened. It is true to the testament and think of one of Pia’s favorite quotes by Margaret Mead “Never doubt that a group of thoughtful, committed citizens can change the world…Indeed it’s the only thing that ever has”

With these words, I conclude on this eve of old memories, not to forget, but to thank our COMMITTED donor. Your strength has not only given Pia a second chance at LIFE, but all those who love and adore her.

-I thank you for letting us have a closer to normal life, as we have been living the pains and hardships of this disease for almost 3 years.

-Our family and friends thank you, for allowing them to love Pia all they know of her, and all that they will be able to learn from her in the future.

-The hundreds of children and families that Pia has worked with in the past 8 years of teaching at various schools.

-The entire community of volunteers, donors, patients and doctors whom from your kindness and example, will continue to save the LIVES of all the patients who are still in need of a donor match.

“Be the Change You Wish to See in This World” - Gandhi

And a special thanks to one of our most dedicated and supportive corporate sponsors, who have demonstrated social responsibility to our community. Without whom, we would not have this website and the ability to spread the importance of this cause around the world.

Diligent Solutions

~Posted on 12/26/2004~
It’s the day after Christmas, and what a mess…nothing but the pile of used dishes, utensils, servers, platters and napkins. It’s another wet misty morning in Seattle, with no sun in sight, but only the remnants of a Christmas gathering the night previous. I quietly got out of bed early, as Pia needed to get some extra sleep from being up late the night before. I looked at this big pile of things to clean, and again, realized that this is so much better that spending the night in a hospital, rather than having Christmas at home. Today is DAY 32, and the fun just begins. You see cleaning is nothing new to me, it’s a “systematic art”. You start off by putting the big things together, then the medium things together, and then whatever is left, in the dishwasher. I the swept the floors in both directions and mopped the floors in the opposite direction.

The part I haven’t spoke about in this leg of the journey, is the strict requirement of being cautiously clean and focused in preventing germs from hanging around. You see, as a transplant patient, you need to make sure you live in a very clean environment, staying away from any possible infection. We have to make sure Pia has fresh towels everyday, the floors are swept and mopped, the furniture in all the rooms are dusted, carpets vacuumed, all the kitchen counters and sinks clean at all times (with a Clorox solution). The fridge spotless clean in the inside and outside at all time too. Also being very careful in preparing food, storing it, heating it up, let alone eating it. On the other end, bathrooms showers need to be cleaned everyday, toilets and sinks scrubbed and cleaned too. I think we get a little too carried away, but with an immune system of a baby, why take the chance right? So getting back to my original point, cleaning is not really a big deal as one thinks it is, the big deal is making time everyday as a Caregiver to ensure it gets done.

As a few hours pass, the apartment is back in its usually state of cleanliness, Pia awakes with a ferocious appetite to eat. So glad for her hunger, we make pancakes, toast, eggs and anything she craves, as hunger is always good to have, as it’s a good sign that she is getting better, and close to normal. And night she needs to eat as much as she can, to becoming close to her normal self. The day goes on, and we reflect back on the previous nights events to realize how fortunate we are to be healthy, feed, and having shelter above our heads.

~Posted on 12/25/2004~
”So this is Christmas, And what have you done, Another year over, and a new one begun…” as the clock radio a woke our sleep. Today is DAY 31, and this is Christmas Day. The day is full of cloud and mist, whereby you could see no traces of life on the waters of Puget Sound, but only the occasional Seagull flying by the window ledges of the apartment looking for food. We wake the joy of knowing we are together, under the same roof, instead of the hospital.

With some coco in hand, we both start to exchange gifts with each other (deep down inside, we both know the greatest gift of LIFE, has already blessed us, and any other gift from each other are just tokens of our love for each other). In a matter of an hour, all the gift are given and unwrapped, even all our “Merry Christmas” calls back home were already accomplished. After taking all of Pia’s medicines, and starting her hydration (she is still on hydration, and will be for a while as one of the medicines process too much Magnesium from her liver causing a deficiency. Until the deficiency is overcome by sustaining production from her own body, Pia must continue the hydration of magnesium through her IV solution). We start to prepare for the night’s dinner, Yes, we are having guests for dinner…yea!!! Rujuta and Vivek (our Seattle family), are joining us for Christmas dinner.

Pia and I spend the whole afternoon cooking dinner for our guests, as well as for complete strangers. You see, Thanksgiving and Christmas are the two holidays we always celebrate with strangers who are less fortunate than us. We usually spend time in the afternoon giving out sandwiches and warm beverages to what some refer to the “Homeless”, while we refer to them as the “Less Fortunate”. This year on Thanksgiving, Pia just got her transplant, so I went solo and handed out the sandwiches and warm beverages in the streets of downtown Seattle instead of our usual streets of New York. Now almost 4 weeks later, Pia will join Rujuta , Vivek and I in making and handing out food to all those who deserve a meal tonight (let alone every night…sometimes I feel sad that, we as caring humans, only help those in need during the holidays, instead of everyday…).

So as we finish assembling the sandwiches and head to the coffee shop to get 30 large coffees (the only place open was 7 Eleven), we loaded everything in the car (the faces of the employees of the 7 Eleven, were so surprising as we were probably one of their biggest customers of the day), and headed through the streets of downtown. At first it was hard to determine who was in need and who were just passer byes. But soon we could tell the difference. With time, we started handing out the sandwiches and beverages to complete strangers who were just so happy for someone to just talk to them, let alone feed them. In a matter of minutes, with the cold chill of the wind blowing in the damp Seattle night air, we saw a large crowd of people taking shelter underneath a highway overpass.

As we proceeded to the area and got out of the car (I cautiously looked around, as Pia was with us and was feeling good enough to observe, and even hand some sandwiches out, while I made sure we were away from anyone who looked sick or coughing). The crowds started getting big as a group of 10 to 15 people saw us handing food out, and further spiked an curious interest of others to seek refuge in us, to help them in a time where no one should be a alone, especially without a meal. Many “Thanks you’s” and “God Bless You’s” were spoken by these strangers who welcomed us into their space. I watched and observed the faces of Pia, Rujuta and Vivek, as everyone knew this was a start in “helping those in need, as we have everything we needed”.

Night falls, and we headed home to a wonderful meal in a warm apartment, with all the comforts of home (for some reason, after watching all those who wouldn’t of had a meal tonight, if it wasn’t for us, I felt like I didn’t do enough to help all those in need…maybe we should of made more sandwiches…maybe we should of looked for more people). Anyway, the dinner started with Pia reading a poem about how “blessed this home is”, for not just the food we are having, but the company that make this home so blessed.

Dinner continued late into the night, as I think we used every pot and pan, dish and bowl, and every last utensil to make this event happen. As the night came to an end, and our guests left, Pia and I talked about not only of all the people that we touched tonight, but all the people who touched us in our campaign to find a donor…we held hands and said a prayer for each volunteer, donor, patient, the media, the government for all their sacrifices and commitment in bringing further awareness of this crisis, and saving lives in our community. Moreover, to our selfless COMMITED DONOR, who we’ve begun to LOVE as Pia’s newest sister.

“And so this is Christmas, For weak and for strong, For rich and the poor ones, The road is so long”

~Posted on 12/24/2004~
Today is Christmas Eve, and the time has definitely been passing quickly. You can see all the streets full of last minute shoppers, as they hurry to get their loved ones last minute gifts. Today, we arrive at the clinic to get our last check-up until next week (4 days later), after the Christmas holiday. You can tell it was the holidays as things looked pretty quiet at the clinic (looked like a skeleton crew was on hand as they expect a very small number of appointments today). Today is DAY 30, and the check-up went fine, we proceeded to thank all the members of our medical team and passed out some gifts out, as our token of appreciation (all the various teams, blood draw, schedulers, pharmacy, nurses, physician’s assistants and doctors…who work so hard day in and out at the SCCA to make sure Pia is doing well).

As we left the clinic, I could help but to see is a slight disappointment on Pia’s face. I don’t think it was just the fact that our family back in the east coast are not going to be around, but also the fact that this year we could not have a real Christmas tree. As at this point of the treatment, it is very unsafe to have a plant in the house (as they may have a fungus or bacteria in the dirt that might cause Pia to have a infection). So real trees are out (you see back home we would always get a real tree on Christmas Eve, decorate it, and put presents all around it that night). Last year we spent Christmas with our family, the year before we spent it together during a snow storm (of course we had to drive around to find one of Pia’s medicines that night, 5 towns away…since it was the only place open on Christmas, but at least we ended up at home that night).

So this year no real tree, however, I decided that we had to find something instead, and insisted we drive around to find some kind of artificial tree that will symbolize Christmas for us. Sure enough, we drove store to store until we came a cross the sorriest looking artificial tree (s) (It reminded me of a “Charlie Brown” Christmas Tree). I dashed for the cashier as the store was closing and we ventured back home (I knew by this time, Pia was really missing back home and especially our family).

With the joys of Christmas carols on every radio station is Seattle, we headed home and unloaded the car. That night as we put up our tree, we listened to the sounds of a Bing Crosby Christmas CD, while we finished decorating the tree and watched Alli in amusement as she was sniffing the tree (I think she was wondering how strange humans are to idolize a fake tree once a year, as a central theme in one’s living room). By now the presents appeared, and the for once, it felt like Christmas (even though we were thousands of miles away).

At the stroke of midnight, we proceeded to exchange one gift (our tradition is to exchange one gift at midnight and open the rest after we wake Christmas morning), with each other as we both know, even without our friends, family and the safety of our home, this would be the greatest Christmas ever. For this year we received the greatest gift that anyone could ever GIVE or RECEIVE, the GIFT of LIFE… And with the end of one night, and the beginning of another, we take the opportunity to thank God, for giving the unconditional strength to both our donor and Pia. To our DONOR, for the selfless act of giving the ultimate gift of LIFE. And Pia, for the strength and courage to sustain the much-needed focus to survive, and still continue to fight for LIFE everyday…as everyday is now another day of LIFE.

~Posted on 12/23/2004~
The morning of DAY 29 arrives, and the clouds start to linger around the Puget Sound. Out in the distant, one can see the reflection of some dark color metal in the cloudy misty sea (the weather is so cloudy and misty, all one can see is the mist covered water of the Puget Sound as if everything beyond a hundred yards become the vast Pacific Ocean). Pia wakes to a hearty appetite. She had dreams of pancakes with strawberries and well-done Vermont beacon (you know the type that has a lot of flavor, but little fat), unfortunately, she knew that if she could just hold done some toast and tea, the day would be off to a good running start.

After breakfast, we start Pia’s hydration via the home pump. By now, taking 10-12 medicines in the morning and at night, it’s becoming a tiring fade, like last year’s boot flared jeans. The day progresses and the weather gets dimmer and dimmer, and Pia’s level of energy starts to diminishes, as Pia gets tired and cranky. We quickly run to the clinic, as today Pia gets a bone marrow aspiration to determine the state of her engraftment and whether there is any residual leukemia left in her body. Before the procedure, Pia usually takes an Adivan to control the nuashia and nervousness, and litacain in the area where the needle will puncture her skin (most of the nurses are shocked at the fact that Pia doesn’t take any other form of sadation for this procedure…most people think it is so painful, that they go under, or even have a strong sadation).

The procedure went great, as we got a detailed play by play from all three of the nurses involved in the procedure. One nurse performed the aspiration, another observed (quality control), while the last nurse took the blood sample and made slides of Pia marrow. Great job guys and thank you so much giving us the details. Directly afterwards, Pia rested for 20 minutes in the rest area (to make sure she was ok to leave). Shortly there after, we head home so Pia can get some rest. It was evident that time has come for to take a nap. Later, after waking from her beautiful sleep Pia realizes, it’s time for me to take a walk and do something for myself (as that’s what I have been telling all the patient families that are going through what we are). So once again, I wander to the center of town to see what gifts lurk to the liking of Pia for this Christmas Season. Soon enough can see all the long lines as all the little children wait on line to take a picture with Santa. I paused and for a moment thought how all my nephews and my niece are doing, I wondered what Christmas would be like this year, not being there for the annual family gathering in the east coast. All of a sudden, it dawned on me, Pia and I were not going to be home for the holidays this year (at that point I felt a sudden sense of sadness, but realized that I should be grateful what I have, instead of what I didn’t have…we both have a second chance in life..what more can we ask for).


~Posted on 12/22/2004~
Another day healthier, and another closer to DAY 100. As the streets get even crowed, and the masses run in and out of stores to get their holiday shopping done, we carefully navigate to get to our next clinic. It is DAY 28, and for some reason, the Sun decides to pay us a visit today. Pia is feeling better and better as the days go by. Her appetite is in fact getting better as she starts to try digesting some more solid foods like potatoes, carrots and even some meats. I can still see the look on Pia’s face as she still wonders to herself how she made it so far in so much pain. The remnants of the Mucocitis still remain in the form of mouth sores and red and white sores in her mouth (good oral hygiene is still important in order to fight bacteria and stay healthy).

After coming home, I prepare Pia’s lunch and hydration (yes, she is still receiving hydration via the home pump), so she can eat and rest for the afternoon. As noon approaches, Pia falls into deep sleep for the rest of the afternoon, all cured-up in a ball on the couch. As she slowly wakes, it’s evening and almost time for dinner. Tired and groggy, she remembers that it’s time for me to head out and once again start our Christmas shopping. This time she smiles and says have fun and don’t come home unless you bought some presents for me.

Knowing that she is all right, I prepare her dinner, and head off for he center of town. It was kind of lonely to go alone, but I just tried to keep focus on the task at hand so I can get back to Pia. As I was leaving the building, I noticed a Indian couple waiting in the lobby (they must have been waiting for a resident in the building), I took a double take as I thought they were someone I knew fro New York (Sarita and Shiva Kumar). I got so excited and almost tapped the women on the shoulder.

Just then she turned at me, and I realized it wasn’t them after all. What a great surprise it would be if it were them. I’ll tell you, I only meet so many people in life that really care to make a difference in your life, and for Pia and I, Sarita and Shiva are one of the extraordinary bunches of folks that do. You see, I met Sarita and Shiva at a drive for Pia back in mid July, just two weeks into our campaign. They got tested (and actually knew Pia’s parents from the past), assured me that things will be OK, and God is watching.

And slowly without and effort from my side, they became involved in doing donor drives and spreading the word. They even went as far as setting up a drive in one of the oldest temples in the US (in Maryland), and even spent the weekend there leading the drives. We would see them often at drives, just fitting in, and smiling, always giving us heir blessings for hope. One day I we were at the Indian Day parade in NY, as both my brother and I were setting up our media equipment in a south Asian Street fair (we always s show a DVD of Pia’s journey at every drive so people can visualize what a patient feels), our gas generator that gave us supply blow up I mean in steam and smoke, but yet my brother and I didn’t give up. As Shiva, looked at us and said now what, no power no media, we heard a roar of a generator just nearby. Quickly my brother asked if we could share in the power source (we ended up give the owners of the generator an extra extension cord in exchange for use of their power source…and went on with the show).

At that moment, I’ll never forget Shiva’s face as he thought both the Dutta brothers were crazy, but did whatever it took to get the job done. It was an eventful day, but I will never forget the support that Sarita and Shiva gave us…still to this day they pray for our safe passage home. THANK YOU BOTH for all you do for Pia and I, and most importantly, all the patients that need our help. Random luck brought the Kumar’s to us, but now faith, strength and support keeps them near us.

~Posted on 12/21/2004~
The morning rises to another day of wet misty rain, yea it’s raining again… Pia slow rises from the depth of sleep, as we get ready to go to clinic. Usually, daily visits to the clinic are welcomed (as they give us an indication of how Pia’s progress in going), but today, it was as if Pia didn’t want to go to school, as her stomach was still hurt so much.

Holding her pain in, we proceeded out journey to the clinic by car (taxi cabs are no longer allowed, as they have to much floating germs in them…not good for someone that has no immunity). For the first time, I really notice Pia gaze out the window, as if she was a child again looking at the clouds, during her first journey on a plane. It was good to see what freedom meant to a patient, as I drove towards the clinic, saying a little prayer to myself, in the hope that she stays healthy and doesn’t ever have to be admitted back into the hospital again.

This brings the beginning the day of DAY 27, and although she still has some stomach pains (the medical team assures us that all of Pia’s test levels are fine, and these pains are her stomach retraining it’s self to digest again). Other than that, Pia is performing like a true champ at this time. Heading home we see all the white lights around all trees in the center of town, the crowds still large, gathering in clusters along all the stores. And what makes it even more real, is the radio in the car, as we hear the song “Feed the world, let them know it’s Christmas time”… I can see the glow in Pia’s eye, as I know this Christmas will be the most meaningful one in both her and my lifes’ (for this year, the greatest gift of LIFE was given to us).

We arrive home, and just as we get in the elevator, we get our mail (lot of cards from well wishers, and a package addressed to Pia). Back in the apartment, we open the package and find a gift basket of desserts and chocolates with a baby moose stuffed doll. The message reads, “ You are a brave girl, we are so proud of you!!! With love the Basu family”. What a treat, as you see, when Pia relapsed, and I put her in Sloan Kettering and hit the road with my friends and family to do donor drives, our first large drive was a Bengali Cultural Conference in Baltimore, Md. That is were Mr. And Mrs. Basu, very close friends of my parents got tested to be a potential bone marrow donor. Infact, I will never forget, Mrs. Basu insisted on being the first person to get tested for Pia (I think both to show everyone that it is easy and painless, and really wanting to be Pia’s match). That whole weekend, the entire Basu Family devoted their time to manning the donor booths to help Pia and the other patients looking for a match. THANK YOU BASU FAMILY for supporting us from DAY 1, you guys are a “perfect example” of what a real friendship is all about.

~Posted on 12/20/2004~
The weekend continues, and the idea of Pia’s presence home is becoming more and more a reality. Finally she is resting properly in the night (the stomach cramps are getting less day by day). Today, I introduce Pia to a different kind of breakfast, one that involves bread. Yes, she will have her first opportunity to eat lightly heated toast like a normal person would have in the morning (not saying that everyone eats toast everyday).

You can se the smile on her face to spell the aroma of tea and toast for breakfast (in addition to her 10-12 different medicines). The day is yet another gloomy rainy day, but at least it is one at home instead of the Hospital. Today is Day 26, and we are planning to leave the house for a quick walk, and a short drive around town (we needed to get a few things to send back to the east coast as Christmas gifts). With a few hours spent in and around town, we head home to get Pia her meds and get her into bed for the night. Somehow, just having a simple day, is getting to become the common theme for this week (the first week home from the hospital).

~Posted on 12/19/2004~
The weekend is here, I used to so look forward to the weekends as those were the only two days out of the week that I was able to be in the same location as Pia (as I traveled all week at a client location). Weekends were so different, as I didn’t have to think about running to catch a flight home or even worried about the weather as it always delayed me from getting home. The weekend was all about being with Pia (of course also playing fetch with Alli’s mousy around the house too), and spending time together, before jumping on a flight Monday morning.

This is the first weekend that Pia is home from the hospital (today is DAY 25), and what a relief to have her sleep in late without the interruptions of loud beeping noises of the IV pump ringing (reminding us that the pump is empty, and it’s time for the next dose). Pia wakes to a morning of slight discomfort, as get ready to go to the clinic to get her dressing checked by the nurses (remember the Hickman catheter that was surgically put into her chest, well the tube that is hanging out needs to be thoroughly cleaned and covered everyday before and after taking a shower…making sure the are is not infected).

The nurses examined the dressing, and showed us how to do the dressing again (even though, we learned how to do this in the caregivers class before…it’s always good to get a refresher).

After two hours at the clinic, we head home so Pia could rest the remainder of the day. Unfortunately, the stomach pains still exist and Pia appetite is still a little shakey, as her body is still relearning to digest food again. After a good nap and meal, Pia is feeling well, and asks me to get out of the house and do something for myself….go shopping…do something, besides taking care of me.

I sit and wonder, what should I do? Where do I go? All I know now is how to be a caregiver and an advocate for other patients. Pia convinces me to leave the apartment and go have some fun Christmas shopping. So with great force, I leave the apartment and head towards the center of town where all the shops are. It was so wired to smell the air of the cold winter, while I hear the Christmas Bells and roars of the large congested hoards of people moving form store to store.

Somehow, I can see it was Christmas, but didn’t really feel it to be Christmas. As now all the fond memories of home start to flash through my mind, wondering what Christmas would be like if we were back in the east coast with our family. I went from shop to shop, looking for some ideal gifts for Pia and my family and friends, but finally succumbed to the notion that I wasn’t really in the mood to go shopping, I just wanted to be back in the apartment with Pia (as this is the first time I am away from her, since she has been home).

I then decide to head home, know that’s the place I really want to be (knowing that the best Christmas present this year, was the notion of a second chance at LIFE). As I knock on the apartment door, Pia opens it’s quickly (as if she waited by the door all night for me to come home), and embraces me as if I was gone for a long time, and I just found my way home.

To all our supporters, as the treatment for Pia has gotten very time consuming, as well as helping the other patient and Patient families through their treatments, I have been slightly behind in updating our web log. I am deeply apologetic, as I know this is for most of you, the only source of knowing what is happening with us. I will work very hard in the next week to catch-up with updating you all. Please watch for more entries the next few days… Thank you for your patience - Tim

~Posted on 12/18/2004~
We wake to the howling screaming winds, which circulate through the slight cracks in the lightly insulated windows of the apartment. With no sun in sight, but constant fog, the day starts out to yet be another day of gloomy rain. The stomach pains are slightly relieved, as the medicines are working. Pia has graduated from light clear liquids to slightly thicker soups (like butternut squash).

Running late to our afternoon clinic (today is DAY 24), we rush through the rainy traffic jams to make our appointment. The doctors are somewhat impressed that Pia is handling her transition back to the apartment quite well, as she did have an unrelated donor match (no one in the family was a match, so our donor is not related to Pia). The verdict…yes, she is doing all right, but we need to proceed with direct caution. The doctors are still trying to establish a baseline as to what all of Pia’s medicine doses will be (as some of the medicines metabolizes quicker than others, hence made loose some of it’s effect on the body…in this case the dose may have to be increase to accomplish the same job). The clinic visit went well, so now head home so Pia can get some food and rest. I drop off at home and start her hydration (via the in-home pump). And ventured out to do some groceries.

Once I got to Larry’s (grocery shop near Queen Ann are of Seattle), I start to collect all the provisions, which will enable Pia to heal, as she is tired of broth and soups. As I was reaching the cashier, I remembered that the last time I was here with Pia was on November 5, when Pia’s match was released all throughout the world on Associated Press (they have been very good to us and the South Asian Community, in really taking the time to understanding the crisis in our community, and reporting it to the public at large…hats off to a socialally responsible journalism group). We actually picked a few copies of the USA Today, Seattle Times and Seattle Post Intelligencer, which all depicted Pia’s story, and the struggles and challenges of South Asian Patients to get a match (it was like having one of those memory flashes, of how grateful you are at life for a second chance).

As I checked out and started heading for the door, I heard the bells of the holidays ring, as there was a less fortunate homeless women with all of her possessions looking for her next meal. She had a soiled face that looked so needy (it reminded of me watching the old classic story on John Stein beck’s “Grapes of Wrath”…as you felt how unfortunate people were doing the days of the great depression, looking for their next meal). The irony was, this women had a cardboard sign hanging around her neck, it said “Homeless in America, the people in Iraq got a second chance, Shouldn’t I have a second chance too?”

Amazing to see this sign and another woman in need, just as I recognized what a second chance in life meant for Pia and I got. I proceeded back into the store and bought her a precooked turkey meal with all the fix’ins (I had it warmed up), got her some drinks and proceeded towards her. I walked up to her and asked her if she wanted something, she smiled as I handed her the dinner bag. As she pulled of the food, I could see her a small smile as she saw the packet of Handi-Wipes that I also bought for her (for it was quite, that it must be difficult to shower, as she probably moved from place to place), as if you can see that was such a treat to get a complete meal and wipes. She wiped her hands clean and thanked me, as I asked for her name (she curiously wondering why I asked, and replied “Amanda Jackson”). I smiled and said, well Miss Jackson, enjoy your meal and have a Happy Holiday. She looked at me with disbelieve that this was happening, and said “God Bless You…”

I walked away with a smile, and said a prayer for her that God may protect her safe passage as God protect Pia and I.

~Posted on 12/17/2004~
The morning rises to another day of wet misty rain, yea it’s raining again… Pia slow rises from the depth of sleep, as we get ready to go to clinic (after discharge from the hospital, we are required to have follow-up visits at the outpatient facility of the SCCA, where we have daily visits with various doctors and nurses). Usually, daily visits to the clinic are welcomed (as they give us an indication of how Pia’s progress in going), but today, it was as if Pia didn’t want to go to school as her stomach was still hurt so much.

At the clinic, the lab results showed that the cramping and diarrhea in Pia are attributed to a bowel infection, or Graft vs. Host. So she has to start the Vancomycin immediately, to see how her body reacts. Today is Day 23, and survival is the key phrase of the day. Pia still feels very tire from leaving the hospital, as the withdrawals from the painkillers are tough for the first week I’m told. Fortunately, Pia is able to swallow some soup and some fruit smoothies, as we are happy to see her hold any food in her system.

The vomiting is still present, but at least her body is reconditioning to the process of eating and digestion again. Today, Pia’s dad leaves for the east coast…boy he was real good help the last week. It’s strange, but I really thing somehow our relation through this time of crisis has gotten stronger, to where he knows and feels secure that we are getting the best treatment for Pia in Seattle. I often think what I would do if I was in his shoes… the night nears, and Pia is stable enough to eat and talk. We decide to watch “The Apprentice” on TV (a show that both Pia and I watch regularly…even days ago when I was always out of town on business, on Thursday nights, I’d always be back in my hotel room watch the show with Pia as we discussed the events of the day. Too many of my friends and colleagues think I should be on the show on day, they feel I know how to get things done at the end of the day. I don’t know about that, as Pia’s is my primary focus, but who knows maybe one day).

As the show concludes, and it starts to become late night and again, we start the medicine regiment (8-10 different medicines), so Pia can prepare for the night’s sleep, while I start to prepare for tomorrows clinic and figure out which South Asian patient need what tomorrow.

As I was catching up on the day’s events, I got a wonderful email from a good friend, who’s really become a family member to us. Her name is CarolAnn Baldwin, a NMDP recruiter for one of the biggest donor centers in the US (New England). I met CarolAnn at one of our drives, and let me tell you, ever since, she has been one of our greatest champions to the South Asian Community. She has proactively helped our campaign night and day for the last 5 months. I don’t what to say, but how grateful we are for all you do for us (Matchpia.org), moreover, for all the patients out there that are looking for a donor match. You are one of the finest individuals I have ever come across.

Today, as almost everyday other day, she sent me an email on how precious life is, and how sometimes we really forget what life is all about. Especially, during the holiday season when there is so much going on with cooking, gift wrapping, toy drives at the local supermarket, and taking angels off the Christmas tree at church to buy a gift for someone, “sometimes we get so immersed in our own holiday, that we forget the real people who might not have a Christmas…That’s when I think of people like you and Pia. Its not the gifts it’s the family and friends that truly make the holiday special”. She further tells me that her daughter who has pretty long blond hair (you the type that is so straight and has every strand perfectly in place), commented that she wanted to cut her long hair one day to make a wig for someone who needs hair, someone like Pia (she saw Pia’s DVD, her hair falling off). Her daughter offered Pia the opportunity to change her hair to blond. It’s so precious to see how children are so resilient and thoughtful when it comes to such serious topics as cancer and life and death.

With no doubt CarolAnn, you and your family are the perfect example of how an “Act of Kindness From a perfect Stranger”. For 5 months ago, you were a complete stranger to us, and now you and your family are at the epicenter of our life’s. Thank you for doing so much for Pia, myself and the whole South Asian Community. You have certainly gone above and beyond as an NMDP Representative, let alone any human I’ve ever met.

~Posted on 12/16/2004~
The whole night felt like a rerun of a “Sleepless in Seattle”, as no sleep was ever accomplished for Pia, nor myself. I guess for me, I just didn’t know what to expect from Pia, as this would be a night without any nurses at her side, and let alone the warm the and shelter of pain killers through IV. The morning was rough, as Pia was so tired from the lack of sleep the night before. From this day forth, the goal is to maintain a level of consistency in healing through the remaining 78 Day in Seattle. Today is Day 22, and will be our first day back in the SCCA (outpatient clinic). Today, they will take several tests to measure and establish Pia’s baseline vitals.

Before the visit to the clinic starts, we had the start Pia’s hydration through IV (2000 cc’s at 225cc’s per hour). At the clinic, the nurses, physician’s assistant and the attending doctor, go through in detail Pia’s records of her recent stay at the Hospital. Vitals are taken, and we reconfirm all the medicines, which Pia will be on for the remainder of this journey in Seattle (these medicines can go on, anywhere from the next 78 days, to the next two years), to ensure Pia is treated for all viruses and potential fungus and organ damage (due to the heavy chemotherapy fro the transplant).

The prescription routine goes like this: Tacrollimus (FK-506) - prevents Graft vs., Host disease. Dapsone - prevents pneumocysitis pneumonia, Acyclovir – prevents herpes virus infections, Vancomycin – treats C difficile, Isonazid – prevents Turburcholosis reactivation, Fluconazole – prevents fungal infection, Pantoprazole – protects the stomach, and relieves heartburn and reflux, Citalopram – helps depression and mood changes, Multivitamins – balance body electrolytes, Ursodiol – prevents liver toxicity, Norelgestromin/ethinly – controls menstrual bleeding, Pyriddoxine – prevents peripheral neuropathy, Saline with various electrolytes – maintain mineral balance of the body, Lorazepan – controls nausea and vomiting, and Diphenhydramine – control nausea and vomiting. This treatment regiment must be taken twice a day from today on. It only gets further difficult, as it is very hard to swallow so many pills, that we try to get as many of the above medicines in liquid form to make it easer and more palatable for Pia to swallow.

The visit to the clinic goes well, and we run home to get Pia back in bed to rest. Just as we get home, the diarrhea gets worse again and we spend the rest of the afternoon and evening again in the bathroom. The stomach cramps still worsen into the night, and now it was time to collect a stool; sample and bring it back to the SCCA lab (the doctors are trying to see what infections may of rise, while also trying to see if there is any Graft vs, Host present in Pia). I drop off the sample and get home, only to spend more time with Pia, as what has suddenly become our favorite room in the apartment, the BATHROOM.

So as this episode continues, Pia and I were reading over some more cards from well-wishers. In fact we also got some more care packages from our supporters and friends. Today Pia got these great pajamas from some of our friends. They a matching set of penguins, with the phrase “Chill-lin”, as that is al we can do for the next 78 Days. Thanks Andrew and Diane…you guys are GREAT, we are so luck to have your friendship.

Today, I also spoke to Baby Varun’s dad (you might remember, that little boy who also had a transplant 2 days after Pia’s), they said he is doing OK, and they are hoping and praying his White Blood and ANC counts go up (since he had a cord blood transplant, the engrafting process usually takes longer than a stem cell transplant form marrow). Our prayers are with you Deepak…

Can’t also forget to mention, the poem we got from a little South Asian boy, who said he is only 10 years old (not old enough to be tested, but old enough to spread the “word” and educate everyone around him). He declared his handicap in age, but declared his strength in knowledge. Thank you young man, for being so strong to help your community…we are proud of our tenacity and courage to help us save lives in our community.


~Posted on 12/15/2004~
The whole morning is full of excitement, as Pia is being DISCHARGED TODAY!!! Yes it’s true, she’s actually coming back to the apartment today. Her ANC is very consistently high, as is all her other vital signs…the DONOR graft is Taking. As I prepare the apartment for Pia to come home too, Pia is at the hospital preparing to come home. In fact, with today not only comes the surprise of discharge, but also an unexpected visit from the members of the Seattle Seahawks Football Team. Not to forget, there were also some of the Lady Seahawks as well, to wish Pia a happy and healthy recovery at home.

As we prepare to leave the hospital today (DAY 21), Pia couldn’t help but to vomit all that was in her stomach from the morning and afternoon meals. It was amazing to see Pia’s determination of feeling better, so she could go home. Several of the wonderful nurses on the 8th. were so happy to send us off (I could actually see the happiness in several of the nurses’ faces, as we were now graduating back to discharged life). These nurses commend so much respect from us, as they are the pivotal part of Pia’s recovery process. A special BIG THANK YOU, goes to all the nurses who work so many countless days and nights, to ensure patient shouldn’t worry about anything.

After we get home, and Pia is reintroduced to Alli (our kitty), Pia runs for the bathroom, as the vomiting starts again. With patience Pia’s dad and I wait until her vomiting calms, and then I start the portable IV pump on Pia (since leaving the hospital, Pia’s goal is kept hydrated with 2000cc’s of electrolytes into her system, until her urge of eating and drinking increases. Not before long, Pia’s stomach starts cramping heavily, as diarrhea starts to precipitate. Pia spends the next two hours in the bathroom dealing with the pains (I too sit on the floor next to Pia as she vomits and continues to have diarrhea. You suddenly realize that your life will be spent in the bathroom (providing Pia the support and comfort she needs), for the next few days, until Pia’s system is functionally performing better.

The night nears, and I prepare the 8-10 various drugs that Pia has to take for the next several months, and years to prevent infection, rejection of the DONOR’S stem cells. By now, it’s getting even tougher for Pia to fall asleep, as the stomach pains are persisting to greater level of pain.

~Posted on 12/14/2004~
The day starts with the strong gusts of wet chilling rain. Some might say it’s just another Seattle gloomy winter day, I’m just glad it’s another day we can look forward to. One understands that another rainy day can never take away the pure pleasure of another day of LIFE. Today is DAY 20, Pia was supposed to get DISCHARGED, but unfortunately she is unable to hold down food in her system, and is constantly vomiting. So for now, Pia’s disappointment starts, as she is delayed from coming home.

As the afternoon continues, so does Pia’s fatigue. She falls asleep on my lap (in reverse direction, with her head facing the footboard of the bed), waiting for tomorrow to come by. I feel the sense of disappointment in her discharge delay, but I think we are used to the notion of being flexible (in the last two years of dealing with so many stays in the hospital, an extra day or two is not really not to bad, compared to the overall treatment of this disease.

Late into the evening as I continued to watch Pia sleep, I caught up to my emails from the day. Amazing how each day starts to early, and ends so quick (it’s like time is moving so fast, and you could do nothing to slow it down). I got a great email from a good associate and great friend of mine Bomsi, who in his own way was just checking up on Pia and me to make sure we were doing O.K. He kind of, in his style indicated the importance of what I was doing with Pia 3,000 miles away from home, and how it is the best thing someone can do ever, for someone he is in love with (I was flattered, as he and his wife Brenda are true example of a successful marriage and still in love today as the day they met). Thanks Bomsi and Brenda and for your support and vote of confidence in everything we are doing.

And lastly, A big THANK YOU to our donor…It is not often that Pia or I forget about you, and how your selfless act of courage is giving Pia a new life. We pray for you and your family’s safe being everyday. THANK YOU…THANK YOU.

~Posted on 12/13/2004~
Somehow, one can see the slower pace of a Sunday. Even here in Seattle, you see the hospital is right next to the University of Washington Football Stadium, and all week you can see the hustle and bustle of the 57,000 students and faculty members squiring about the campus (it feels just like being back in New York City). But things change on a Sunday, the football season is over, and there’s no longer any traffic near the hospital and stadium anymore. The hospital lobby is sparsely empty (even after 11:00pm, you can see all the young med students, laying down on any available couch trying to catch-up on their zees for the day).

The morning sun, slowly flickers between the blinds. Yes, there is sunlight today (the sun is so scarce in the winter, that people stop whatever they are doing to see the rays of light, and enough absorb whatever warmth may be present), in the mist of this dead winter month. Pia wakes to Day 19, with the aching of her Mucocitus torn throat coughing for air.

Her ANC counts are still on the upraise, and it looks like she will be discharged Monday. So far her hunger, has revisited need and her sense for survival. Remarkably, she is starting to swallow more than just clear liquids (some boiled carrots, even potatoes). As the day goes on, so does her wantful appetite to eat. Late afternoon unfortunately thinks turn for additional discomfort. After taking her medicine, all of her food intake for the day is coming up, and it becomes to hold anything in her stomach. Partially, this is her body reacting, while she is getting used to eating, swallowing, and digesting food for the first time. Slowly, I can see the anxieties on Pia’s face, know that she will be discharged tomorrow (it was one of those looks that a child would have, knowing that Friday is tomorrow, and it’s your favorite school day of the week because the weekend is here, but with it, also comes the Spelling Bee test on Fridays…so you’re really confused how you really feel about Friday coming around).

To get Pia’s mind off her stomach, we started to open some of the wonderful letters, cards and gifts sent by well wishers (THANK YOU ALL FOR YOUR GENEROUSITY). It’s an overwhelming feeling to have so many people rooting for your safe healing (well wishes from UK, India, Australia, China and even the United States). There was a very unique card we got from a lovely person in Atlanta (Shalini P., who actually attended our first drive there, and has followed Pia’s story since), which was very pleasing for the eyes, and very detailed with thought…Thank you Shalini for not just getting test to be a potential donor, but for being with us all the way. It’s amazing to see the kindness of a complete stranger, who is no longer a stranger, but is part of the Matchpia.org family.

~Posted on 12/12/2004~
The day starts with complete speed, as my mom rushes to cook Pia some last minute soups and treats (a mother can never feel satisfied, unless they know they’ve done all they can), before she and my dad depart for the east coast. Also today, Pia’s dad arrives at his turn to support Pia’s treatment. Before long, one set of parents departs, and another parent arrives.

Today is Day 18, and Pia’s ANC is consistently up and moving closer and closer to engraftment. This treatment, is often a balancing act, as the numbers that measure her chemical improvement are getting better, but some of the physical pain that is not measured, seem to stay constant. Yes, the Mucocitis is still here and causes a lot of havoc in this journey. Her throat is still sore (as if a bolder is stuck in her esophagus), and making it hard to eat and swallow.

Pia is eating some of the various light soups, however, it’s very difficult to hold down the food for more than an hour or so. The throat not used to the food, just automatically sends it back up and out the mouth (as if the food is being rejected by the body). Amazing enough, after all the pain and bad taste that’s being experienced, Pia still continues to try to eat (being that all the counts are on their way up, and her chemical results are looking good, she needs to demonstrate that she can eat and swallow to be discharged from the hospital to go home).

Today, the TBN (Total body Nutrition), will be discontinued as Pia is able to eat on her own, and the doctors announced Pia would probably be DISCHARGED on Monday. What great news, this means that the donor cells are engrafting in a manner that the doctors are satisfied. Everyone around, is excited to know Pia is going back to the apartment to recuperate (this is Day 18, so if all goes well, we need to be here in Seattle until Day 100, which is another 88 Days until we go back home to the east coast).

As the day’s chilly rain turns to night, we receive a few visitors (local friends), to share the good news, of her coming home. Somehow every time someone comes to visit, I think the journey becomes more and more visible to everyone on how and why we are here in Seattle. I think people get to feel and see what it is that we go through each day of this journey, and take away the fact that life is precious, and things become better into perspective as what is more important, than not. One of our visitors mentioned that it has taught her, how to be less selfish with her own needs, and more aware of others who are in need. She was amazed that, even being in the hospital one day into the transplant, I spent the morning away from Pia, preparing and distributing food for the less fortunate, while Pia was alone at the hospital those few hours (you see, both Pia and I are grateful for what we have, and few hours apart, is a small sacrifice to know several less fortunate individuals will have something warm to eat on Thanksgiving).


~Posted on 12/11/2004~
As I looked out of the window, I noticed the misty wet waters of the Puget Sound. There, you can see the cargo ships full of large containers coming to port, every morning, afternoon and evening. It’s as if, no matter how bad the rainy and windy weather is pushed ashore by Mother Nature, the ships still come to port and leave port. It reminds me of how sometimes caregivers must do the same. No matter how turbulent our life’s become in dealing with this journey of transplant, we must all endure to “Stay the Course”. Consistency and commitment are becoming the words of the day.

With another day of great pain and swelling of the mouth, Pia still sees and feels the extreme pain from the Mucocitis. Consequently, her vomiting and nausea still remain. Her ANC, still continues to rise, as her engraftment from the donor stem cells are staring to graft. Today is Day 17, and Pia’s throat is still feeling the hardships of pain. Interesting enough, we are told by the doctors that Pia may be able to be discharged soon (as her counts are coming up strongly, and all her vitals are looking good). Only one catch, she has to be able to swallow and eat food like a normal individual (the TBN-Total body Nutrition via IV will have to stop, and she will be whined off the pain killers), and hold it down.

Thats a great sign, as now I have to attend “Pump Class” for caregivers. Upon discharge, Pia will be given 2000 cc’s of hydration via an IV pump (caregivers are required to attend a pump class to administer hydration an IV liquids). At the pump class, they go over the basic details of how to operate the portable battery powered pump. So for the next hour, I stay focused, and learn everything I can, on the use of an such instrument, that will keep Pia hydrated until she can consumer liquids on her own.

The night ends as my parents and I bid goodnight to Pia. Tonight, now becomes a special night for my parents, as they meet Rujuta and Vivek. My parents wanted to meet the special couple that has become a great source of support for us in Seattle. Rujuta, who did a donor drive for us when we first stared our campaign (she and her husband signed up 33 people in someone’s house…awesome!!!). Since then, we have become such good friends here in Seattle. With gratitude for them, my mother cooked a very authentic Indian dinner for our invited quests. The themes tonight, become rewardin