History

Journal History

Sunday, September 23rd 2007

I visited priya's site after a very long time. I could not bring myself to do it.

I am so glad I came...thanks to my wonderful family and friends who still take the time to remember my darling.

It is sad that life goes on and my arms remain empty. I long to hold her, hug her, kiss her...

Good night!!!

Thursday February 2nd, 2006

Happy Birthday my Darling!

February 2 1995 : My beautiful daughter was born to me. "Happy Birthday My darling Priyanka" We miss you!

With love

Wednesday, February 4, 2004 9:54 AM CST

Dear Priyanka,

Happy Birthday my darling...what I wouldn't give to just be able to hold you...

With love,

Leels (MOM)

On February 2nd, the country watched if the groundhog would be able to see his shadow. At our house I missed my little shadow who would have celebrated her 9th birthday. She indeed was my shadow....following me everywhere, trying to do everything I did, wanting to dress like me, be like me. It was annoying at times, little did I know that it was all very temporary and my time with her so limited.

Priyanka's birthday celebration was just the way we have always done it. Apart from the gathering with my friends at home, Priyanka's best friend Rosie hosted a tea party in her memory with a few close friends. It was nice to see them all dressed up, acting lady like and the very next moment they would giggle and run around. I am thankful to all those who made a special effort to come (inspite of the horrible weather)and make sure that I was not alone on my baby's birthday.

I always wondered if eventually I would seek a grief support group. But given that I am surrounded by such wonderful family,friends and well wishers, who shower me with an over abundance of warmth and love...there has never been a need for one.

Thank you all for helping me through this incredibly difficult path in my life. I could never have done it otherwise.

Leela.

Tuesday, January 13, 2004 3:03 PM CST

Another painful day...Exactly a year ago today I found out that Priyanka had relapsed. Once again our world came to a screeching halt, and I refused to get her admitted feeling a need to be home and digest this new reality.

There are efforts being made by this wonderful community to keep the memory of my baby alive. I will share those once we have plans finalized. Thank you all for checking in on us.

With love,

Priyanka and Leela.

Friday, December 19, 2003 10:02 PM CST

Just as the entire world gets ready to usher in the New Year, it makes 2003 seem unreal. I never thought my daughter would be taken from me within 8 months. What a year it has been!

She started this journey as a toddler and just as she was blossoming into a young girl, was stopped in her tracks again. Looking at girls her age, makes her absence so real. To think that she did not get a chance to dance in the ballet, play the violin with her orchestra group, perform the piano at the christmas concert for which she had bought a beautiful dress, is just unbearable at times.

Often we are forced to deal with what life has to offer, but the loss of a child is just very hard to accept. The void is unbearable, and through it I have evolved as a new and altered person.

I am thankful for all of you who have taken and still take the time to check on my family and continue to pray for us. Those priceless prayers have given us strength to go on.

Happy Holidays to all your families from ours. Thank you for being there for us!

With love,

Priyanka and Leela.

Tuesday, November 4, 2003 10:07 AM CST

My sister Priyanka

Priyanka was my sister,
Strong, brave and athletic.
She was smart and beautiful,
and my very very best friend.

Never crying for anything,
only when I bothered her.
She was my best sister...
and my only one!

With buck teeth she would smile,
I would wonder if I could survive without her..
Now, I must live without her.

By: Nihal, her big brother who adored her in sickness, health and death.

And so life goes on, and there is no reprieve from this grief. The pain feels cancerous in a sense, it eats you away very slowly till you begin to feel numb, and even the narcotics of kind words showered by caring friends and family are unable to soothe it. It has become an unfathomable reality of life, a paralyzing pain that keeps coming even when you know that you cannot take anymore of it.

I am trying to adjust to a new normal life...after the past 4 & 1/2 years of medical normal that we had lived in. People went to the gym to get healthy and we went to the oncologist. Mothering the child left behind has become my biggest challenge, something that came easy to me in the past. Life seems pronounced, every action very deliberate, every decision clouded with grief.

Distraction is sought in daily activities that in the past were second nature. Now even lunch with a friend seems like decision making. I thought that keeping myself busy would help but not so. Well at least today I am fearless, nothing can be more horrifying than watching your baby die and not being able to do a thing about it. What else is there for a parent to fear...

Priyanka lived eight years, but she was a very strong, courageous and resilient little girl. Her spunk awoke the kid in me, her laughter was infectious, her dreams and ambitions now only a memory. The joy remains that I was blessed to be her mother.

With thanks to all of you who still check to make sure that we are okay...

Leela.

"Kind words can be short and easy to say, but their echoes are truly endless"

By: Mother Theresa.

Monday, October 20, 2003 6:11 PM CDT

Today is 8 weeks since my baby left me. It seems like ages since I have held her in my arms and kissed her. Life seems meaningless.

All of you have helped us in many ways. I want to thank you for your support through this horrible journey and the priceless prayers. I am grateful to all of that have donated genorously to the Cancer Kids Fund.

With love,

Priyanka and Leela.

Sunday, August 31, 2003 9:29 AM CDT

In conclusion...

Knowing that a lot of people have never met my daughter and me, people who did not know her well enough, and others who knew her well...I want to share some parting thoughts about this very private journey with my baby.

Starting off with an excerpt from a close friends e-mail...

"Priyu looked beautiful yesterday - truly a princess. As I looked around the room , I saw her in the hearts and minds of the people gathered around and in the faces of her young friends. Oh Leela, I want to be there for you and when I hugged you it broke my heart, but you were there full of courage, strength and grace consoling me and everyone else - even chiding me for being too indian and cutting the line.
It was heartwarming to see Priyu so surrounded by the love of her family - Nihal, your sisters, and all those who loved her - she was truly blessed - to have you as her mom, her advocate, her protector -- her all and you even more blessed to have her as your daughter.
The room was so beautiful and serene - just like Priyu would have arranged it herself -- she had one heck of a talent for these things -- her arranging chocolates on a tray at the pai wedding, wrapping a birthday gift for me --she was there in every beat of your heart -- yours and hers shared the same rhythm.
She and you are teaching us how to meet adversity with a smile, even greet it, fight it and enjoy life while doing this --- she never complained about her misery but faced it boldly and with her wonderful smile .........."

That was only the beginning of what my daughter was all about. Our journey began on Aug 13th, 1999 when we went to the doc thinking that she had the flu while her symptoms were screaming leukemia. When she saw tears trickle down my cheeks, my 4 1/2 year old turned around and said that she was okay. I realised then that if I was strong she would be too...she was my shadow, an extension of myself. I immediately adopted the attitude that no matter what, she would have a relatively normal life and she did.

When she was re-diagnosed on Jan 13th 2003, I took her to Paris before she got admitted for treatment. Although the idea was opposed by all (family and doc's) I was not willing to negotiate. We had a trip of a lifetime, just the two of us. At the Notre Dame, Priyanka's prayer in the box read "God, I hope that I do not die of my cancer". Considering the fact that the trip was put together in less than 2 days, making a hotel reservation less than 24hrs before arrival, and absolutely clueless about the country, we embarked on an adventure and had the time of our lives. Thanks to all my friends who made this trip possible.

Knowing the duration of this treatment, I tought Priyanka to pretend that everytime we went to the hospital we would be checking into our time share condo in the city. We could see the skyline at night and make ourselves a part of the happenings of the outside world through that. Thanks to Mrs Bracke her second grade teacher who shared this journey with us and made sure that Priyanka would not be forgotten or fall behind in her academic achievement. I raised the bar and she always performed. I used to tell her that mediocrity or even failure is acceptable at a time like this, but to be a cut above the rest inspite of all our limitations is where I saw her...and boy did she step up to the plate.

Our final journey at the "U" was very rough. The staff there was very supportive and adjusted well to me who stood like a hawk around them, I am sure they had a name for mothers like me. Infact the day I left her bedside (which was very few times) it was put on her card that "mom was out for 1/2hr". In the end my baby did all her little insulted body could do. Her last words to me were the night before she was intubated, when she asked me if she was going to die. I told her then that her job was to fight hard and leave the rest to the doc's and me to help her. Although they gave her 36hrs, she gave us more than a month to help her. The night I lay in her body bag, hugging her tired, bruised and bloody body that started to go cold...with all the staff out of the room...alone at last with her, my only thought was how we had all failed her....

I have never given a lot of medical information on the site to protect her privacy. There was so much happening every minute the last 6 weeks that it was just not possible to give an accurate update. But to summarise her death...Priyanka died of a sepsis infection with dropping blood pressures that were not responding to medication. As I had my hand on her beating heart, realising how finite the medical team around her was and could not do anything for her. Her heart finally stopped inspite of all the efforts they made for 5 hours.

Thanks to all my family, especially my mom who took care of the household so that I could give Priyanka my undivided attention for the last 2 months. My friends who helped with Priyanka's memorial service. Glenlake school for keeping Priyanka in the loop. Itron for their support...the countless prayers and prayer services held in her name all over the world. We came this far only because of you all...

It comforts me to know that my baby left me to be in the arms of my beloved father, who loved her and pampered her when he was alive. She was very saddened by his death and not being able to meet him again. My Life will never be the same without her......I was blessed to have her as my child!!

Thank you all for joining us on this journey.

With love,

Priyanka and Leela.

**Please check her funeral and other photos that I will put on in a few days. The website link is at the bottom of the webpage. There is stories about her chess achievements at www.startribune.com/stories/466/4061703.html, and Chessbase.com

Monday, August 25, 2003 11:49 PM CDT

It is almost midnight, and after a very chaotic day I am still not able to digest the fact that my baby instead of being home with me, is in a cooler, without me being able to see her, keep her warm and check on her every 15 mins..... I know this journey is going to be more difficult now than it has been in the past 8 months. The most difficult thing is to be alone in a room full of people and no one being able to do anything to save her precious life. The helpness I felt this morning was the most crippling experience yet.

Priyanka had a very rough ride and suffered a lot but never once complained about it. She was my soulchild, and I will forever be incomplete without her...my trophy daughter who is every beat of my heart is now forever etched in my soul. I am not sure where the rest of my life will take me but the journey will never be the same without my baby.

With love,

Priyanka and Leela

Funeral Services:

Visitation will be Wednesday between 5pm to 8 pm at:

Washburn-McReavy
Strobeck Johnson Chapel
1400 mainstreet, Hopkins.
952-938-9020

Monday, August 25, 2003 4:04 AM CDT

My Princess died this morning fighting real hard...

Leela.

Saturday, August 23, 2003 12:43 AM CDT

I have not been able to get to the computer but just knowing that so many people out there care and want to know about Priyanka gets me motivated enough to scribble a quick update.

Things are not looking good again....

Priyanka's multiple organ failure has surfaced again. She has gotten her liver disease back, her kidneys have failed again, her lungs have filled up with fluid and possibly is bleeding too with a chance of having pneumonia. Her heart the only organ that held strong is also affected by this trauma. She still has her bleeding and we have not had respite from any of this. The counts are slow to come in, and the fear being that history does not repeat itself, with the new graft getting tired out to support her. She also has her skin graft v/s host again. There is too much happening with her and much as I hold out hope that she will be get better, there are times I wonder if she will manage to make this monumental climb again with her tired little body.

She is my trophy daugther and I know that no matter what she always performs well...and I pray that this time she can keep pace. Thank you all for keeping her in your prayers, it has been the key to keeping her alive for more than 5 weeks and will help her thread through these very difficult waters.

With love,

Priyanka and Leela.

Wednesday, August 20, 2003 11:33 PM CDT

I am not sure where to start. There is so much happening with Priyanka every minute of the day that putting it down is just draining and makes this journey very real.

As of this night...

Priyanka is still where she was last few days. She is awake but not as responsive as we would like to see her. There are several tests being done to make sure that she does not have any damage done to her brain. She is very troubled by the vent tube in her mouth and is trying hard to breathe well so that she can come off the vent. Her counts are still not good and we are waiting for numbers to show that will initiate healing. Her organs are just dragging their feet, and I hope that her white cells come in soon to bail her out of this misery. The team here is keeping a very close eye on her and want to make sure that she does not drift off the wrong way again since things are still very uncertain for her.

Please pray for my baby...

From her mom,

Leela.

Saturday, August 16, 2003 7:47 PM CDT

Priyanka is getting to be more aware of her surroundings and is actually showing signs of movement in her arms and neck. Her lungs are still weak and hence the delay in getting off the vent even though she is on a weaning mode. Physical therapy is a part of our daily routine and Priyanka actually sat up with help. Her baby cousin was here and sat on the bed with a very weak and frail Priyanka.

Her counts will be meaningful in the coming days and I will keep you all posted. Thanks to all the wonderful words of encouragement and prayers, it means the world to us. Please check out the pictures that show progress.

With love,

Leela.

Thursday, August 14, 2003 10:56 AM CDT

As the days go by, Priyanka seems to be more awake and aware of her surroundings. She has a long way to go with rehab and physical therapy from being vented and in bed for so long. Her lungs are still weak and although on a weaning mode, it will be a few more days before she is able to get off the vent. She is able to move her legs but not upper torso, arms and neck. The muscles are really weak from all the insult it has had in the last month.

Our hope still is that she can engraft well and heal herself. There is a good possibilty that the old graft may come back once the immune system kicks in. It was suppressed and was not able to keep up with all the problems her body ran into. As of now Priyanka is stable, but not for long if an immune system does not kick in SOON!!!

With love,

Priyanka and Leela.

Tuesday, August 12, 2003 5:19 PM CDT

Everyday brings more of my Priyanka back to me as she continues to wake up and stay awake. She looks really confused and distressed with all the happenings around her and inspite of being bothered by, is complient of the breathing tube. Hope is to get rid of it in the next few days.

Priyanka has multiple medical issues that are being addressed at the same time, to make sure that the new cord given yesterday would have optimal conditions to engraft.
Given the current circumstances the docs here are trying hard to keep her out of trouble this time around. Time alone will tell if there is light at the end of this tunnel.

We all await the new engraftment and hope that this time around nothing threatens its potential to heal this child and give her a new lease on life. Thanks to all the prayers that we have banked...she will come home soon!!

With love,

Leela.

Saturday, August 9, 2003 3:49 PM CDT

We are now just a few days away from a second transplant. Priyanka is hanging in there and it will be more than a week before the next cord shows signs of engraftment. In the meantime she is fighting the same issues and I only hope that she does not run out of energy. It has been a real rough ride but her courage and determination is just awesome.

The highlight of my day is her being more awake. She was looking around, gave us a occasional nod in reply to some questions and even moved her arms and legs. It was just wonderful to see and feel life in her body again. In the next few days she will be off the vent and I just cannot wait to hear her sweet little voice they say will be hoarse for a while after.

Although I do not reply to all of you that sign in and send me mail, I read each one and am ever grateful for all the prayers that have come our way. It has created lots of positive energy that helped keep Priyanka going. Thanks again to for being vested in my baby, and cheering her every step of the way. She will be overwhelmed when she gets to read them all.

With love,

Priyanka and Leela.

Thursday, August 7, 2003 10:21 AM CDT

Just a quick update...

Priyanka's condition is still critical but over the last 24 hours it has become more unstable. She is losing large volumes of blood and we are still trying to keep them in wraps...really tough!

She is going into transplant #2 from today. The meds will be started this evening and in the next 5 days we will give her a new cord blood. Now the hope is that she can hang in there another 10 days till the cells try to engraft and help her. Her situation is very delicate with too many complications to list. All I need is for prayers, that my baby can stay strong for this last leg of her fight and that the white blood cells come in soon to rescue her.

With love,

Priyanka & Leela

Monday, August 4, 2003 9:56 PM CDT

Priyanka has made a few more strides towards recovery, however the million dollar question wether we still have the graft remains to be answered. Her counts have not come up yet and everyday that passes with no counts increases the possibility that her graft may have been wiped out or suppressed aggressively by some virus. Hopefully the results of last weeks bone marrow will give us some indication of which way this is going. If she has lost her graft then we will have to repeat this procedure with no guarantee that she may not be attacked by graft v/s host the second time around.

My hope rests on the graft starting to show signs of growth within Priyanka. That would help her heal fast, not have to go through this a second time and be able to get home to be with all the family members that are eagerly waiting to spend time with her. Most of all Priyanka waited for July 15th, the date of her baby cousins arrival. Unfortunately she got sicker and was in no shape to enjoy the baby. She will be crushed to know that all these weeks have gone by while she was asleep and may not be able to play with the baby like she had planned since the beginning of the year.

I have been overwhelmed by the generous gift of prayers by family, friends, Itron staff, and even people I have never met. This time I am making a personal appeal to please pray that my baby does not have to go through this all over again. She has fought hard for her life and inspite of all the odds against her she has made it this far with flying colors. I always taught my kids that no matter what the obstacle in life, being brave and fearless is means to overcome it. I know now that Priyanka took in every word I told her.

Leela.

Saturday, August 2, 2003 9:41 PM CDT

I apologise for not writing more often but things have been so uncertain for the last 2 weeks that tying to keep up would have been very difficult for me and all of you who check on her.

To start of with good news...

An updated ultrasound done yesterday showed that Priyanka's liver has corrected itself, so I got to check off Veno-Occlusive disease off my list. Her kidneys are still getting help with the dialysis machine, however she is doing a real good job with taking charge of some of her kidney functions. The issue of her bleeding gut is being resolved and has decreased from where she has been for the past 11 days. Now all we have to wait for is white blood cells since we have NONE. Not seeing cells in the next fews days would mean that we will have to walk this road again & I shudder to think what may be waiting for her second time around.

I want to sincerely thank all of you for adopting my princess in your prayers. You have all proven the power of prayer and I would never have survived this week without them & my child is living proof of it.

With love,

Priyanka & Leela.

Wednesday, July 30, 2003 9:52 PM CDT

I stay awake every night in hope that the morning will bring good news. This has been a ride from hell for us. Today brings more bad news, Priyanka's bone marrow biopsy showed that there are not too many cells in there, and that could mean that we have indeed lost the graft. This means that we are facing a possibity of graft failure. There is a hunt out for a new cord blood, since her immune system is so short that it is not meant to come back. This is a very serious problem for my baby. ONLY A MIRACLE CAN SAVE MY PRINCESS........

Tuesday, July 29, 2003 7:35 PM CDT

Priyanka threw a curve ball at the doc's by losing her bone marrow within a matter of 4 days. She is now down to nothing and that is not a good thing at this stage of the game. They are giving her more growth factor to help with the production of white blood cells however that has made no difference yet. This has thrown us off once again with being able to understand the turmoil inside her little body. A bone marrow biposy will be done tomorrow to see why she lost all the donor marrow. I will post results as soon as they become available.

The status of rest of her organs remains stable. A liver ultra sound showed things are heading in the right direction, but she still needs a lot of support with blood products given round the clock. Her kidneys are supported with dialysis, and her lungs with the ventilator. She continues to bleed from her gut and hope is, that will resolve as rest of the system heals. The fevers continue to come causing concern about an infection chewing into her bone marrow.

Well the nature of this game is speculation, and I hope that the doc's can find the right answers for all the problems they see in my baby...ofcourse that would be in an ideal world!!. The care and support offered here has been extremely good, and WILL eventually lead her on to the road of recovery.

Thanks to all that have adopted my baby in their daily prayers and leave loving notes of encouragement. She will enjoy reading them when she becomes awake again, and hopefully not remember the ordeal she went through when asleep. I am proud of my daughter who choose to fight and always stepped up gracefully to the challenges dished out to her.

With love,

Priyanka and Leela

Saturday, July 26, 2003 11:20 PM CDT

Five days and not even close to a solution. Priyanka has a very slow recovery path. Her condition although very critical is under control. She is on a couple experimental drugs we hope do well for her. I have a few new photo's of what she looks like, since visitors are discouraged at this time. Thanks for all the prayers that are said for her...a priceless gift at a time they are needed the most!!!

Leela.

Thursday, July 24, 2003 11:48 PM CDT

It must be all the prayers due to which Priyanka has made it past the 36hrs deadline. Although she is still in a very critical state with multiple organs shutting down, the good thing is that they have been able to stabalize her. We only hope that there will be more recovery in the near future. Thanks to all of you that have had prayer services for my daughter. I will post detailed updates & pictures of Priyanka in the next few days.

Leela.

Tuesday, July 22, 2003 4:00 PM CDT

Priyanka has taken a turn for the worse. She kept getting sicker by the day & finally yesterday they put her on the breathing machine. Now that she has a ventilator, there is a sense of peace in her. She was in a lot of discomfort.

Priyanka has too many things going wrong all at once. Her stomach is very enlarged due to the fluid that is in it, which has covered 2/3 of her lungs & surrounded her heart too. Her kidneys got stressed out,stopped working & hence they have her on dialysis machine. But her biggest problem is that her liver is very very sick. It has been attacked by veno occlusive disease, & has stopped functioning properly. This means that the most important function of clotting the blood is not being performed. This puts her in very critical state, since at this time she can hemmorage internally & that can be fatal. She also has grade 3 (4 being the worst) skin GVHD. Her lungs show that they have some infection and bleeding in them too.

The doc's were not too optimistic last night and told me that if she does not stabalize within the next 24 to 36 hours there is a good possibility that she may die of liver failure or internal bleeding.

My darling is fighting hard..........

P.S. I just heard that the parents and children of Glen Lake Elementary had a prayer service for Priyanka. I am ever grateful to you all and hope that this collective voice of prayer reaches its destination!! I thank you all for taking the time for my princess (that's what they call her at the hospital)

Leela.

Monday, July 21, 2003 9:03 AM CDT

A quick note to let you all know that Priyanka is critically ill and is threading difficult waters. I apologise for not being able to write details, but she is fighting hard. Thank you all for checking in on my girl.

With tremendous faith that she will turn the corner soon...

Leela.

Friday, July 18, 2003 8:34 PM CDT

Today was not a good day for Priyanka, the skin biopsy test showed that she has stage 3 GVHD (graft v/s host). Not a good place to be. She has gotten into trouble with her liver, kidneys, stomach and has a very bad rash all over her body. The GVHD is on almost every part of her now. She is also in a lot of pain, throwing up with lots of bloody stools. At this time she is in a very critical but so far stable condition. She is also connected to all kinds of tubes and needs help with her breathing since there is evidence of fluid in her lungs. Tonight and tomorrow will be very important as far as her kidneys go, if her creatinine does not come down then she may need to be on dialysis immediately. The surgeons have been made aware of this urgency that may arise with her. She is fighting hard, but her tired little body could not take any more insult.

With this note I sign off...

Leela

Thursday, July 17, 2003 10:29 PM CDT

Today was long drawn like the last few days. It almost feels like the road got bumpy just as she started growing the new marrow within her. Although none to the results are in yet, the doc's now feel confident that she has graft v/s host. She has been really sick with high fevers & has severe stomach cramping with bloody stools. She is really weak & shaky from the loss of blood & the amount of relaxants she is getting to make her comfortable.

The treatment for GVHD has started tonight. Hopefully it will take care of this acute problem in the coming days. I am still keeping faith in the doc's here & hope that they can make my baby well soon...

Goodnight!!

Leela.

Wednesday, July 16, 2003 8:39 PM CDT

And so the fight continues...as her aunts & cousins along with grandma, dad & big brother come and try to cheer her on. Priyanka's condition has not improved much, infact gotten a little worse over the last few days. I need to clear up a misunderstanding that was created by my use of the word "discomfort" in the previous update. Priyanka's major problem is that we are not able to keep her comfortable long enough with drugs NOT because she is PAIN. This discomfort is largely by the elevated numbers of all the liver functions, a very delicate gut & skin rash. It is a feeling that she has not been able to articulate. Infact she was off pain medications until today when her stomach & spine started to hurt.

Today almost 10 days after her blood counts went up, the doc's decided to act on the symptoms that are now probably signs of something more that what they thought might ride itself out. The word used was "GVHD"...There will be skin biopsy done tomorrow, along with a more specific liver scan, and serious consideration about an endoscopy. All these will help to determine if she is suffering from graft v/s host. If tests come back positive then she will have to be treated for it and that might make this child feel better.

Inspite of the fact that the only time she got up was to use the bathroom, she was determined to go to the airport last night & receive her baby cousin. Thanks to Dr Paul Orchard , Beth, Rich & all the others on unit 4A who made it possible for her to do just that. A half hour before, she got really sick & was urged to reconsider leaving the hospital. But there was no telling this very determined yet frail child and her stubborn mom what to do. She got dressed, rode the wheel chair to the car, and went to the airport just like we had planned this months ago. Too sick to talk or greet she waited patiently in the car and gave us a weak smile as we buckled the baby next to her. She was very tired from that outing, and once we got back to the hospital cried again in discomfort that she endured all through her ride and went to bed for the night.

Thanks to all of you that take the time to check on my baby. Those prayers and positive thoughts are not only priceless but what keeps us going. A special thanks to all those in Itron who have send her letters & cards over the last few months. Although she does not know a lot of you, it was a pleasure to receive and read each one of them.

With love,

Priyanka & Leela.

P.S. Check out her pictures when she had a few good moments with the baby last night.

Monday, July 14, 2003 11:13 PM CDT

Day # 24...

Just as counts keep climbing so does her bilirubin. Priyanka continues to feel sick, has no energy & is crabby. Human contact is very cumbersome for her at this time. She waited for the day when she would be able to leave the room, but yesterday it did not matter when told that she was a free girl. We took a few wheelchair rides today but that was too much for her. She cries frequently & we are barely able to keep her comfortable with medications. All this lead me to try & comfort her in different ways, and facial massage was the trick. However she wants it most of the day & that is the only time she lets me get close to her.

This is the time in transplant when graft v/s host can surface. Typically GVHD comes either as a rash, in the gut, or in the liver. But Priyanka has signs of everything the liver being the worst. A liver biopsy can conclude this speculation but the doc's are concerned about bleeding especially now when the tendency is to have low platelets. However they are keeping a tight surveillance on all that is going on with her.

Thanks to all for taking the time to check on my baby.

Leela.

Saturday, July 12, 2003 6:07 PM CDT

Day # 22...

Things are looking good as far as Priyanka's blood counts, however her liver is having a hard time. The doc's think that there are many variables in this situation that can cause her liver to stress out. They did another ultra sound to make sure that there was nothing new brewing in her liver and the results were good again. They are working towards helping it heal, but at the moment her liver is keeping Priyanka from feeling good. She feels lousy all the time, & very occasionally gets out of bed. As of now she is not showing any signs of physical recovery and still has fevers that come & go throughout the day.

Friday was Priyanka's bone marrow biopsy, & the preliminary results showed that she is still in remission. By the end of next week we will be able to tell if the donors cells are the major component of her marrow.

Her baby cousin arrives with mom (my little sis) & her big sis Namrata on Tuesday night, & her aunt (my older sis) comes from India Monday night. I am looking forward to having both my sisters here with my mom & me. It will nice to be altogether again.

Thank you for checking in on us, it makes me feel connected outside these walls.

With love,

Leela.

Tuesday, July 8, 2003 10:32 PM CDT

The last 3 days have not been too good, Priyanka is having high fevers & the rash keeps coming & fading away. She has been sleeping a lot and feels lousy. They did another CT Scan today to see if they find a source for these fevers. Will post an update about the findings.

The speculation is that she may have engrafting syndrome, but as some more symptoms are being added to the mix there is a feeling that it could also be early signs of GVHD (graft v/s host). The next few days will be key in concluding this & starting to treat her if there is anything that can be done.

Thank you all for checking on us...

With love,

Priyanka & Leela.

P.S. I have added a picture of what she looks like today!!

Sunday, July 6, 2003 4:42 PM CDT

Day # 16 was the charm...WE HAVE BLOOD COUNTS!! Finally after the last 6 days on the rise Priyanka's white blood cells are now at 600 with an absolute neutrophil count of 400. Even though these numbers may fluctuate in the next few days, today was a good start to hopefully a trend towards healing.

Priyanka has been oblivious of having made all this progress since she got sick again this morning with high fevers. She has been throwing up & sleeping most of the day. This could be the result of the quick recovery of white blood cells that sometimes can make things worse before starting to make her feel better.

Thank you all for the words of encouragement offered to her. Whenever she feels good enough & gets to the computer, each one of the notes is read by her.

With love,

Priyanka & Leela.

Thursday, July 3, 2003 8:45 PM CDT

Day # 13 & we are still dealing with a lot of the same issues. Priyanka's rash was a little more prominent & widespread, but not enough for the doc's to take any action. If the rash persists or gets any darker when the counts start coming up, then they may need to get a skin biopsy to confirm if the rash is caused by GVH (graft v/s host). GVH is a big threat as the new cells start engrafting. If Priyanka's cells decide that they do not like the newcomer & start attacking it, then that will be cause for concern depending upon the grade of GVH. She is under survelliance for it.

In a nut shell although she sleeps most of the day, she does have some good moments. She is healing slowly but surely...

Leela.

P.S. Check her out, I have some new photos!

Tuesday, July 1, 2003 9:02 AM CDT

Priyanka had a whole body CT scan done, that revealed a sinus infection. They have put her on some more antibiotics to cover that & prevent the growth of any fungal infections. The new drugs have helped to keep the fevers under control. Her liver numbers are looking good compared to a few day ago. She is sleeping practically all the time, still has her sores that got a little more painful, continuing to throw up & is very weak. She manages to get up & check on her cousins photographs & then crawls right back into bed. All this is expected & will get better as the donor cells start growing in.

Thanks to all that pray & create a positive energy around my child. There is strength in numbers & we are blessed with lots of loving family, friends, co-workers & even people who inspite of having never met them, have added her on to their prayer list.

Leela.

Sunday, June 29, 2003 8:23 AM CDT

Today is Day # 9 & feels like we are inching our way towards recovery. The good news of the day is that Priyanka's ultra sound did not show any liver disease. However her liver numbers are still high indicating it might be stressed out due to the other variables in this equation of transplant. Her sores are being kept under control with pain medication. There are many issues transplants patients go through, but these are some of the perils one has to face on this extreme road to recovery.

There is still time before the new cells start growing in Priyanka & until then her body will be vunerable & threatened by infections. The fact that she is running very high temps indicates that there is something going on & the concoction of antibiotics is being constantly revised to accomodate any new suspected threats.

I feel fortunate knowing that she is doing much better than I every imagined she would on Day # 9. Given her past history she could have taken a free fall given this is a totally different playing field, but not only is she holding her own, but is determined to recover soon & be home when her baby cousin Nidhi arrives.

As for her business...it is booming & her only employee (me) is trying to keep with the incoming orders. I love my pint size boss & believe she is worth every squint my eyes undergo to thread a microsopic bead & make yet another sale $$

Thanks for checking in on my baby...

Leela.

Friday, June 27, 2003 10:24 AM CDT

Wednesday (day # 5) was when Priyanka's downhill climb began. She woke up to a mouth full of sores that went all the way down to her throat & stomach. She was in a lot of pain and was put on a continous pain medication drip to make her more comfortable.

Thursday (day # 6) brought more troubles her way. She started off with fevers, & by days end she vomitted blood. Her liver is also showing signs of strees. Bilirubin numbers were up & her eyes are yellow indicating a number of things that are contributing to the liver problems, daily ivy food, chemo & the other cocktail of drugs, or something called veno occulsive disease. A liver ultrasound will be done this afternoon to enable the docs to conclude on the cause of this problem. Whatever the cause may be, there is nothing other than supportive care that can be given at this time.

She is now on a plethora of drugs & blood products to minimize her risk for developing anything more & stabalizing her current situation. The next week might still continue to be difficult & hopefully after that the new cells from the cord will be ready to start helping her body heal.

She is doing well in spirit & is real strong. Thank you all for taking the time to check in on her.

Leela.

Tuesday, June 24, 2003 4:45 PM CDT

Day #4

"We are pleased"...is the tune the docs have been singing for the last few days. Priyanka is doing very well & I am saying this with an air of cautious optimism. Day #7 is when we are supposed to see signs of trouble. We are already dealing with issues of constant vomitting & diarrhea.

As of now, Priyanka's life revolves around her cousin, 6 month old Nidhi. It is the eagerness to see her photos that gets Priyanka out of bed every morning, no matter how lousy she is feeling. She dashes to the computer & checks the online album every hour to check for new photographs. Laxmi, my sister (who lives in CA) is taking photos all the time to satisfy Priyankas insatiable appetite for Nidhi's pictures. Infact she has made photography her new line of work...thanks to my very demanding daughter, who sends Laxmi threatening mail if she fails to send photos twice a day. They will be visiting us on July 15th & that is the deadline by which we have to get out of the hospital. Priyanka cannot get enough of Nidhi...must be an eternal connection!!

I can never thank all of you enough for the Prayers, support & love that is send our way. Like I always say it is "Priceless".

Leela.

Friday, June 20, 2003 4:21 PM CDT

Finally the transplant is done... everything happened in matter of minutes. After all these months of prep work it took only 10 minutes to give her a new lease on life.

Priyanka was very excited, wore her new dress & got ready for her big day which started off with a low hemoglobin leading to a blood transfusion. For the first time she was given O blood which we thought might be a sign about the kind of cord blood she was going to receive. Well enough it was O which means she will have that as her new blood type. She was surrounded with love, prayers & was very excited to cut the cakes, one of which was made by Padma and was to die for.

Soon after the transplant she got sick, threw up & is now taking a nap. We will know in days to come if her body is accepting & growing the new marrow. The effects of radiation & chemo will start showing up by early next week.

Thanks for all the wishes & prayers that have come our way.

Leela.

Wednesday, June 18, 2003 5:56 PM CDT

We have done 3 days of radiation & Priyanka is begining to slow down. She will have her transplant on Friday, a blood transfusion that takes no more than 15 minutes, but hopefully will give her a new lease on life. It will be celebrated as a second birthday & she is thrilled since this one will be in the summer.

Things are going well, especially her bracelet business. I cannot keep up with the orders, & being her only employee am getting throughly exploited by the BOSS. Having her own business & now a computer in our room, have made her a very happy person. It will be a few more days before we begin to see all the effects of all the chemo & radiation. Until then I enjoy every good moment with her. She is a joy, & the most perfect daughter for me.

Thanks for taking the time to check on us...

Leela.

Sunday, June 15, 2003 1:46 PM CDT

Priyanka is doing well. Her chemo is done & today is a day to rest. Tomorrow she will start full body radiation & she is looking forward to it so that she can leave the room. She is also hoping to get a computer which will enable her to check mail & her website. Her spirits are up, & looks forward to her brothers visits (most of the time). Hope she can stay well...

Thanks to all of you for checking in on us.

Leela.

Friday, June 13, 2003 11:28 AM CDT

The lack of access to a computer was the cause of delay on the updates. After moving us down by a day since the cord blood had not arrived at the U, we were admitted on Wednesday morning. Came back home on pass for a few hours, & then later at night checked in to start the last leg of this treatment.

Priyanka is really upset by the fact that she cannot leave her room, & will remain that way till her transplant is done & is not threatened by infections once her ANC (absolute neutraphil count ) is on the rise 3 days in a row. She was also mad about not being able to get her own computer since the lady who checks them out is on vacation. I am trying to keep her busy with activities infact she will be starting a small business of selling bracelets & necklaces. The necklaces will be the kind nurses can wear to hang their badges. She is really excited about it, & we have the next few weeks to create our inventory. This will be motivating enough to keep her going while she is really sick.

The U has very rigid policies in place, but all in the interest of the child so we have to learn to digest this new temporary lifestyle. She is looking forward to radiation since that is the only time she will be able to step out of the room. Her chemo has begun & today she is receiving high doses of a drug that she had an allergic reaction towards during her ALL treatment. Hope she is able to handle it this time. Infact this could have been the drug that caused her this secondary cancer.

Have to run, but will update later...

Leela.

Saturday, June 7, 2003 10:59 PM CDT

After a real hectic week at the U, all the results are in. Priyanka is "healthy" enough to proceed for transplant. She will be admitted on Tuesday morning. I hope this procedure helps in giving her closure with this illness, so that she can go on to being a child & enjoy her days studying, playing, doing art , music & just plain giggling with her big brother.

Although the cord blood transplant can give a new lease on life it can also be a very life threatening process. Priyanka will undergo high levels of chemotherapy, accompanied with 4 days of full body radiation twice a day. All this takes a toll on the total body immune system, more than the chemo she went through for the last 4 months not discounting the latter in any way. Once her immune system is completely zeroed out she will receive the cord blood. The process is like a blood transfusion & those baby cells will start growing in her body just like they did in the new born baby's from whose umbilical cord it had been harvested.

It will take about 14 days from the day she receives the blood that we can see signs of the new cells growing in her. This is when we could encounter some trouble with graft vs host. She can get very ill if her body decides to reject the new cells. This is controlled with anti-rejection drugs that are given from the get go & continue 6 months after transplant. Medications are given round the clock to control & prevent the laundry lists of complications & side effects that can occur. She is also not allowed out of her room till her blood counts are on their way up. The rooms have a special air flow & are completely equipped to be an ICU room in case these kids get VERY ill. They are isolated from the world & are not allowed to have any more than 3 visitors at any given time (mom included in the count)in the room. Hope she can "stomach" this procedure & survive it.

Priyanka is eager to come home soon since her new baby cousin (Nidhi) will be coming to visit when she gets back home from transplant. She is having a fun night with her friend Rose, who is here for a sleepover. Today Priyanka & I went to a little 3 year old boy Ryans Funeral, who shared the 8th floor with us & had AML too. She wanted to send him some ballons so participated in choosing & releasing then at the cemetary. We become a family up there & are always hoping to see a happy ending, but Ryan's death validated the silent fear we all share. I pray for his parents & can only hope that God will give them the strength to bear this precious loss.

Thanks to all of you who take the time to check on us. Please pray that my baby can come home soon...

Leela.

Tuesday, June 3, 2003 10:02 PM CDT

Our Trips to the U have been very hectic. Days start at 6.00 am & before with us there all day. Tomorrow (Wednesday) being the longest this week. Priyanka is a good sport & thought that the radiation room was the coolest of all that we have seen so far. The results of all the tests will be out by this Friday, these will help determine the date of the transplant.

Leela.

Sunday, June 1, 2003 7:58 AM CDT

This was an absolutely fabulous week. Given all the limitations, Priyanka did a lot even went to school on move up day. Next week we start work up week at the 'U' & have a packed schedule. They will run lots of tests on her, to make sure that all her organs are working well, & will be able to withstand another round of insult that will be inflicted by chemo & radiation. The testing will also include another check to make sure that her spinal fluid & bone marrow are leukemia free. It is important that she have no more that 5% blasts (leukemic cells) in her marrow to qualify for a remission status she has now. Will keep you all updated with the results.

Thanks to all that visit this site & care to know about Priyanka's journey with Leukemia. These trying times have been supported by all the positive energy that has been created by the love & prayers you have all showered on my family.

Leela.

Tuesday, May 27, 2003 0:15 AM CDT

Priyanka was very tired & had residual fatigue from these last 4 months that kept her from being 100She has all the same issues at home & still feeds at night on liquid food that goes through her central line. However she is happy to be home, & tries to muster up energy to do the things she ordinarily did in the past. The weekend went by real fast, but lots was accomplished.

Grandma will be coming from India Wednesday afternoon...Thank God!!! She will be here through the whole transplant process, & we are looking forward to that. She is absolutely wonderful, & Priyanka is excited to get a few days at home with her.

Leela.

Friday, May 23, 2003 1:21 PM CDT

Once again we leave Childrens, wagons filled with stuff that we have accumulated over the last 47 days. It is a sad good bye since we will not be here after an almost 4 year relationship with them. The nurses, CSA staff, doctors, childlife, social workers have all been so great that it almost felt like home or my "time share condo in the city".
We will be moving to the U of M sometime in the first week if June. All that will be determined by what Priyanka's marrow does in the next week.

For now we are excited to go home. Priyanka will be going to Childrens Theatre tonight, Minnesota Orchestra Saturday night & much more over this long weekend. She looked really pretty today all dressed up to leave here, a place that was her home for the last 4 months.

Once again thanks to all our well wishers...could not have done it with the support.

Leela.

Thursday, May 22, 2003 5:27 PM CDT

Today did not start of on a good note. There was traces of Myeloid cells in her blood this morning. I was very disturbed, but hoped that the bone marrow results would be more encouraging. They indeed were, she has less than 5% leukemic cells in her marrow, which means that she is still a candidate for cord blood transplant.

We will be going home tomorrow, & will get to enjoy the weekend doing things we like. Next week will be crucial in putting together a plan for things to get rolling at the U of M. Priyanka is very excited & is looking forward to being home after almost 46 days.

Thanks to all of you who have supported us through these last 4 months & have helped us with a lot including food. The prayers have been priceless ...could have not made it without that.

With love...

Priyanka & Leela.

Wednesday, May 21, 2003 6:51 PM CDT

Today was a great day. Priyanka's blood counts are going the right way. She is full of energy, & caught up on her school work. Mrs Bracke, her classroom teacher was here to help Priyanka wind down 2nd grade & keep her updated on all classroom activities. Mrs Bracke is by far one of the most dedicated teachers I have ever met & am glad that Priyanka had an opportunity to be in her classroom this year.

Tomorrow is a big day for us, her marrow testing will be done & the results will determine her fate with transplant. She needs to be in remission, otherwise will be in big trouble. Will keep you all posted as soon as we get the results.

Leela

Tuesday, May 20, 2003 5:56 PM CDT

Priyanka is finally looking good. It seems like a long 43 days, but her counts are coming back up. I am hopeful that we should be able to go home in the next few days, or latest by this weekend.

Leela.

Friday, May 16, 2003 11:30 AM CDT

Last few days have been a painful ordeal for Priyanka. She has a very swollen belly & with the gut infection at its peak has made life hell for her. She is under the influence of heavy duty pain killers & she sleeping most of the time. However her sleep pattern is interruped with a spasmatic pain, which wakes her up crying & seeking solace with a bolace dose of morphine.

Looking at the bright side, her bone marrow is recovering & she has a few good cells, we hope will multiply soon & help her heal.

Leela.

Tuesday, May 13, 2003 2:21 PM CDT

Priyanka has been very sick the last few days. Last night she had high fevers & chills. Scans this morning showed her gut infection is back. She is in a lot of pain. With narcotics & pain killers on board, she is working on another art project.

Leela.

Friday, May 9, 2003 2:49 PM CDT

Priyanka is still under attack with fevers & stomach pain. She is low energy & has not been able to play on her special scooter. However she keeps herself busy with art projects & reading.

Leela.

Wednesday, May 7, 2003 2:37 PM CDT

Priyanka was doing great up until two days ago. She started to spike fevers again & her stomach pain is more than before. She has had several CT scans & x-rays taken. She is getting so good at positioning herself that the guys down at radiology may want to use her for their instructional video. I only hope that she can keep herself healthy enough till her marrow recovers & starts making good cells for her. This will enable her to go for bone marrow transplant by end of the month.

Leela.

Wednesday, May 7, 2003 2:37 PM CDT

Monday, April 28, 2003 12:22 AM CDT

Priyanka is still continuing to do well. She gets unhooked from her pole for few hours a day & that has been of great help. She can ride the scooter, play games, comes down to the family resource center etc. Her energy level is also good (thank God for ivy food), but does not eat much due to her mouth sores.

With love,

Priyanka & leela.

Saturday, April 26, 2003 11:38 AM CDT

Priyanka is doing really well compared to the last time. She has lots of stomach pain which is eased with morphine. Her fevers are under control with antibiotics which allows her to play & study. Her teacher visits us every week & has been very instrumental in helping keep Priyanka abreast of all the classroom happenings.

Leela.

Wednesday, April 23, 2003 3:02 PM CDT

We are on Day 16 & Priyanka is doing real well. She has low grade fevers but nothing like the last time. I only hope she can stay out of trouble, it might actually enable us to go home sooner this time around.

Leela.

Monday, April 21, 2003 11:38 AM CDT

Today is last day of chemo & Priyanka is holding on real good, except for the nasty cough that she has not been able to get rid of. CT scans & X-rays show clear lungs, & I only hope that continues to be the case.

Leela.

Friday, April 18, 2003 11:54 AM CDT

Priyanka is doing remarkably well. She was happy to have Nihal over last night, & they both had a good time. She still has 3 more days of chemo, & we hope to continue to do well even after chemo is done.

Leela.

Wednesday, April 16, 2003 4:52 PM CDT

We are back in the hospital with a fever. Priyanka starts chemo again tomorrow. Her spirits are high & is ready to get on with it.

Leela.

Monday, April 14, 2003 10:58 PM CDT

Hello,

After 5 days of intense chemo, we went out on a trial pass on Saturday. Since she did well, we were allowed to stay home for the next 3 1/2 days. It has been a real treat, since the weather has been good, & her spirits high. She biked & is having a fun time with her "Anna" (big brother). He is enjoying her too. We will be back in the hospital on Thursday April 17th for more chemo.

Although there is a cord blood match for transplant we are not sure if that is the path we will take. Experts around the country have been consulted to help us make an informed choice. It will also depend on how she tolerates this round of chemo.

Thanks to all, for the wonderful words of encouragement, the chess tournament was lots of fun & am glad she did well.

Leela.

Wednesday, April 9, 2003 2:56 PM CDT

After a wonderful 4 days at home,we are back in the hospital for round 2 chemo. Priyanka is doing well & trying to finish school work, before she gets sick again.

Leela.

Friday, March 28, 2003 7:46 PM CST

By far one of the best days we have had since last Friday. Priyanka is on the road to recovery from the viral infection that she got. We may go home this weekend, & hopefully be able to stay there for atleast a week before we check in again for round two chemo. I have also added some new photos to the page...

Leela.

Monday, March 24, 2003 5:10 PM CST

After a wonderful prayer service on Sunday, I took Priyanka home. I would like to thank all the wonderful people who made the prayer service happen.

We had a few good days at home doing things that we once took for granted, like going to the library, restaurant & movies. She was sick & had to be admitted on Friday. We will have some procedures done tomorrow to determine the start date of round two. If she is not well enough we may have to wait a few more days.

Leela.

Friday, March 14, 2003 7:30 PM CST

Things are looking good enough for us to be able to go home this weekend. Priyanka is being kept under observation for a few issues that should hopefully resolve soon. She is very excited & has had a fun time going home on "passes"

I will start posting again, once we start round two, which will begin when her counts are good enough. Until then thanks to all our well wishers...

With love from Priyanka,

Leela.

Monday, March 10, 2003 2:37 PM CST

Priyanka is having a great day. Although the morning started off with pain, she began working on school stuff & before we knew it, the time was 1.00pm & she was still going strong. Her blood counts took a jump up & hopefully will continue to climb within the next few days. We are very optimistic about being able to come home this weekend.

Today is day 42 & we are almost at the end of this round. When my life came to a screeching halt for the second time on Jan 13th, I didn't know how I would be able to help her survive this ordeal all over again. But with the help of the doctors, nurses, childlife, my mom, Mrs Bracke, absolutely wonderful friends & family, the endurance level my baby has & her very understanding big brother...this was a breeze. I feel real confident that we can survive the rest of this treatment.

With love from Priyanka & me...

Leela.

Sunday, March 9, 2003 3:29 PM CST

Priyanka's counts are inching their way up, & her stomach pain is still the same. Hopefully this will be her healing week & we will be back home soon.

Leela.

Thursday, March 6, 2003 4:43 PM CST

Wednesday was a real good day, I was able to take her home on a pass for about an hour. She went to her room, played for sometime with her brother but then it was time to get back.

Today, Thursday has been a rough one. She started off with stomach pain which at times was unbearable & brought under control with pain killers. Scanning showed her stomach infection that was stable for all these days is growing again. The next few days will be watch & see, however with low blood counts nothing much can be done at this time.

Leela.

Monday, March 3, 2003 5:46 PM CST

Today Day 35 was a very good day. Priyanka is not feeling as lousy as yesterday, & we actually saw signs of the bone marrow coming back. Although she has only 2 neutrophils we are beside ourselves just knowing that this is the first sign of recovery.

As for the cord blood we might have some positive results. The initial reports are looking good, but more extensive testing will confirm the match. Those results will be shared soon.

The procedure to donate cord blood is to be in a hospital that has a program in place to collect it. The U of M cannot collect any intented donations unless it is family or they had evidence that the blood may be a potential match. Every donation made to the cord blood bank will be screened for individuals seeking it. So please encourage all your friends who are potential donors to be aware of this "gift of life" they can give someone.

Thanks again for all the support...it means a lot.

Love to all from Priyanka & mom,

Leela.

Sunday, March 2, 2003 2:23 PM CST

Another lousy night & day in the life of Priyanka. She has been crying about feeling lousy, & the doc's are hoping that whatever they are trying will work. Her temps are still very high, & are under close watch. Scans yesterday showed that the infection in her gut is there, which will heal once her counts come back.

Leela.

Friday, February 28, 2003 4:48 PM CST

It was disappointing to know that I can no longer be a marrow donor for Priyanka. More sophisticated DNA testing, had revealed that she & I are mismatched by one more point. That makes us match only 4 1/2 out of 6, which is not good enough & could cause potential problems for her. They are now looking for cord blood which is much easier to find, than an unrelated marrow donor. However they are looking for both options.

After being fever free for 3 days, Priyanka has once again spiked her temp, & is undergoing testing to make sure that she is not brewing a new infection.

Leela.

Monday, February 24, 2003 4:32 PM CST

Another good day for us, although low on energy, she is doing well. I am hoping that we can be home this weekend, if not, then early next week. She will be allowed to heal at home & gain back her strength before we come back for round 2 chemo.

Leela.

Saturday, February 22, 2003 3:48 PM CST

Priyanka is doing well. We were back from the ICU sooner than we thought. She did not want to be there, so once she was in a stable condition we were transported back to the 8th floor. Here internal swelling is the same, & we hope that once her marrow starts recovering she it will start to heal. In the meantime we hope that she can keep other infections at bay.

She is very tired all the time but looks much better than she did a week ago. She is retaining a lot of fluid & the only good thing is that her cheeks are so cute filled that I cannot resist kissing them all day & it makes her real mad. Her spirits are high & she is trying to walk again, & hopefully get back to school work too.

Although the damage done was intense the damage control is just as good...they are doing all they can to make her feel normal...so to speak!

I would like to thank all of you for your encouraging words for my family, I read all of them & keep it close to my heart. JUST TO CLEAR THE RECORD, NIHAL HAS NOT WON ANY NATIONAL CHESS AWARDS this year, am not sure what caused the misunderstanding. He won them a few years ago.

If you do plan to visit, I strongly suggest to call me just so that I can inform you if we are having a bad day. My phone # 612-874-4862.

Tuesday, February 18, 2003 5:41 PM CST

After going through a very rough week, with very high fevers & numerous other issues, Priyanka is now in the ICU & will be there till she is stable. She is fighting hard...

Tueday, February 11, 2003 3:02 PM CST

Yesterday was a very important day in the course of this treatment. Priyanka went in to have her bone marrow & spinal fluid drawn & checked...she came out clean. She is in remission on day 14 which is good news. I pray that she stays that way. The chemo has ended for this phase, & now we are waiting for her body to heal. She is in good spirits for the most part, with me to slave drive her into doing her school work & exercise.

She is losing her hair & it is all over the place. She was sad to see it go this time & clings on to the little that is left on her head. I still believe that she looks real cute when she is bald, but somehow she does not buy my story this time around.

Friday, February 7, 2003 7:48 PM CST

On January 13th, I heard those chilling words again "It might be Leukemia". I was hoping we never had to go down that road again. Taking the bull by its horns, we have embarked on a journey that will be very tough. Priyanka will fight a new cancer in less than 13 months of her last treatment which lasted for 26 months.

Priyanka is in the part 2 round of phase #1 chemo. This time the treatment is short but very intense. We started off with good blood counts so are going downhill at a slower pace. Priyanka is beginning to show signs of the chemo consuming her. However she is trying hard to maintain her moods.

She starts the day (depending upon how she feels) with school work. I tutor her at the hospital & am making sure that she can still experience all those things that a healthy 8 year old would do. We are making the best of this situation considering all the limitions we have to deal with.

With the love & support of all our wonderful family & friends...my baby will come out with flying colors like she always does. I am blessed to have been able to give her life not just once but hopefully twice, this time as her bone marrow donor.

Thanks to all of you who have shown so much support for my child & family, I cannot do this alone, this time around.

Monday, January 08, 2001 at 11:04 PM (CST)

Hello to all our well wishers. It has been a while since i have updated this page. So for all of you a quick update.

Priya is sensitive to her chemo & so now is on a lower dose. She had her hernia operation done, & is doing well in school. Had her first ski lesson, is back into her favorite swim school.....& last but not the least participated in her first chess tournament. She is doing well & I hope that she continues to do so.

Just a note of thanks to all of you who check this site for an update on my child.

Thursday, October 26, 2000 at 10:38 PM (CDT)

As of June....Priyanka has been doing well. Some minor ups & downs, but realtively smooth sailing so far. We should be done by October 13th, 2001. Priya will start first grade.

Priyanka is having a good time in Kindergarden, & making a lot of new friends.

I would like to thank all of you who visit this site to check on Priya. It is the care & concern of all our friends & family that has helped us through all this. We could never have done without all of you. Thank you all again.

Thursday, June 22, 2000 at 11:05 AM (CDT)

Priyanka had her Bronchoscopy done yesterday. Everything checked out fine, the patches that were found on her lung during her CT Scan are now been conclusively diagnosed as viral. Her counts have shown the first signs of going up, & her fevers are a lot less. We hope to be going home pretty soon.

Sunday, June 18, 2000 at 12:58 PM (CDT)

Priyanka got hospitalized on June 10th, & has since been there. We were in our last week of intense, but the constant fevers & low blood counts have kept us there. She received two blood & one platelet transfusion, in the last week. I hope that in the next few days we will be home. Big bother is out of school & eager to start his summer vacation.

We have some fun pictures to share, so please so visit out photo album.

Sunday, June 18, 2000 at 12:58 PM (CDT)

Thursday, June 01, 2000 at 10:36 PM (CDT)

Today, priyanka started her last two weeks of intense chemo. We hope that she will do as well these two weeks, as she has during the initial course of this intense stage. She is eager to start all her summer activities, & get to the beaches, go biking, kayaking etc....,& I am sure she will be able to do all that soon.

Wednesday, May 17, 2000 at 12:19 PM (CDT)

Today Priyanka had a ultrasound done on her stomach, & everything checked out fine. We will be going home later this afternoon.

Tuesday, May 16, 2000 at 04:18 PM (CDT)

Priyanka got admitted last night, because she was having real bad stomach pains. She is relatively doing well today, & will hopefully have a G.I. testing done tomorrow, after which we will go home. She is tolerating this round of Intense Chemo very well & are hoping that she continues to do so.

Saturday, May 06, 2000 at 01:35 PM (CDT)

My life came to a screeching halt on Friday, August 13th 1999, when my pediatrician told me that my 4&1/2 year old daughter probably has leukemia. I needed to rush her to Children's Hospital in Minneapolis, where he had arranged for me to meet with a Pediatric Oncologist. I was the shocked, & took a few minutes to digest what he had just told me. My first thought was that we would lose Priya. Nothing prepares parents to hear a diagnosis like cancer. I was so numb that, I couldn't hear anything he was saying. How can a child who only had constant leg pain (dismissed as growing pains), dizziness (then blamed on the very severe heat wave we had) be diagnosed with such a devastating illiness. Nothing seemed to make sense. We took Priyanka to Childrens Hospital.

After an agonising series of tests & Priyanka constantly telling me that she felt good & wanted to go home, we found out that she has ACUTE LYMPHOBLASTIC LEUKEMIA. It is considered a treatable kind of cancer. She had BLASTS (cancer cells) in 98% of her bone marrow. She is a standard risk child, & had a few things in her favour. The cancer did not show up in her brain fluid, & she does not have the Philadelphia Chromosome (it's presence determines the chances of a relapse), ofcourse the fact that she is a girl (it takes one year longer to finish treatment for boys), etc...

Priyanka's total treatment time is 26 months. She finishes on October 13th, 2001. If there is no sign of a relapse in 5 years after, then we can count her in the group of 85% who are treated successfully, & go on to leading normal, healthy lives.

On May 1st Priyanka started another leg of INTENSE Chemotherapy. This will last till mid June. She will then be on maintainence Chemo, for another 16months.

I was always proud to have a daughter like her, but to see her fight this with such a fabulous attitude & so much grace , makes me honored to be her mother. Not to mention how proud I am of big brother Nihal, who has stood by us & been very supportive of Priya. He is always very caring & concerned about her well being.

Our battle started 9 months ago, & we will continue to do what it takes to fight this. Ofcourse we could never have done this without the help, love , support & MOST of all the PRAYERS, of all our wonderful family & Friends. I am very grateful to each & everyone.

Our wonderful brother & sister in-law who came to help us make sense, understand & cope with all this, were there by us from day one. My mother flew in from Bombay the same day & was also here to help me with Priyanka's care. We also had friends & relatives come from near & far come to be with us, & show us their support.

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