Thursday, January 20, 2005 3:11 PM CST

Today was her first check up after getting back from Duke. It feels good to go to the clinic once in two weeks. Her counts and chemistries looked good. She is off cortef and down to two mg pills. Dr Eames has told us to move to our local Flower Mound/Lewisville Cooks Specialty Clinic.
This clinic has Oncologist over there every Tue. So we have to go to Fort Worth once a month only to see a transplant doctor and meet oncologist in our city. (NO DRIVE FOR MOM!!!!) Dr Eames also gave permission to take her for a matinee show or 1/4 full restaurant or grocery store. We need to use our judgment and our comfort level. You guessed it right.. I AM NOT READY!!Janvi was very excited to hear her newfound freedom. She really wants to go grocery shopping for some reason.
I am so used to the restrictions and the rules that I am not ready to move on as yet...scared and emotional, tensed and nervous. I will take my time and wait for the flu season to be over first.
But her first step to go shopping was achieved yesterday. We had gone to Pier One to pick up some glasses and seeing the store 100% empty we took Janu inside. Gosh she was excited and wanted to take rounds of the store again and again and again.
After a long time I could smile at something ,so small for others and a huge milestone for us.
Meanwhile, mom’s reports came back too. She has stage 2 of Breast cancer. They found it in her lymph nodes also. The doctors plan to start her Chemo next week for 6 months followed by radiation and hormone therapy.
She is a very strong lady and Janvi is her role model. Mom is aware of all the side effects of such treatment.
I have come to the conclusion that I am surrounded by two very strong personalities...Janvi and my mother. The amount of courage, strength and will power they have is my strength.
A local radio station interviewed Janvi for a radiothon they will be having end of Feb. Mix 102.9 is raising money for local hospitals. Yes..Janvi did do her simba roar for the record.
The big news from the Shahi home and the biggest news for Janvi ever is that the Princess has a loose tooth!!! Yes the tooth fairy will be making a trip to see the princess soon.
I Hope the spirits remain good, the goals remain high and the wishes from my friends for us and other families are always on their way.

Manu

Saturday, Jan 15th 2005

SIX Month checkup!!!!!!
Life has a bright side and a dark side,for the world of relativity is composed of light and shadows...look only for the good in everything,that you absorb the quality of beauty.
Paramahansa Yogananda

Day 220
Dr Martin called yesterday evening to let us know that her results came back normal!!Thank You God. All Donar Cells.
If its our hard work and Janvi's will power, I have to give lots of credit to the prayers and wishes from all our family and friends.Please continue to keep us in your prayers and have the good vibes for us,my mom and our special trooper Kyle who is PICU. Manu
Day 217 of transpalant.
Its all in the mind I guess. When I used to update myself with websites of other warriors I never imagined that i will be typing the 200 series for the days after transplant. Janvi is six months post transplant and is doing good.
Medical Update:
We went to NC on Sat night. The journey was comfortable and stay was good. We had our clinic appt on Monday. ( Those who know Janvi and the clinic nurses...yes she made me wear matching again..I really dont mind be called her sister!!!!) She was super excited to see all her nurses but inside her eyes were looking for the Samurai.But the warrior had to wait for the master. First she had her pulmonary test...blew blew blew......those lungs are doing good, the chest picture showed the same..why not because her heart wants her to be all fit soon. It showed that too in her echocardiogram.
After lunch we headed back to the clinic. Janvi had to first meet Ann ( the nurse practioner) Her results of her labs and her test were back and looked good. And finally the moment she was waiting for last three months..Dr Martin ( samurai) came and the two warriors hugged and exchanged notes. Yes she has a mild case of skin GVH..which is good. They say it makes chances of relapse low.Dr Martin had a very busy day and looked tired.Once we were done with our questions Janvi wanted to know when she can go to a resturant or grocery. Her immunity function test would be back in one month..after that he will open up some restrictions.Her chemrism test would be back on Fri. Overall she got a A from him.
Well she has to wait for 3 months and make herself strong to meet the team again.
We headed back to Bobby cousin house and stayed there for the night.
My happiness was very short lived. On getting home I found out that my mother in India was in the hospital as she was diagnosed with Breast Cancer. My heart ripped apart and my fear started to do the victory dance in front of me. My parents were hiding it from me thinking I ahve my plate full at this time of my life.
How can it be the person who gave birth to me and the person I gave birth to both have CANCER. Is this such a common thing or just God has its own way of testing me. She is doing okay and they are waiting for her results of her surgery to get back. By this weekend Janvi and moms test results would be back.
Last year onJan 13 Janvi finished her treatment of ALL and same day got diagnosed with MDS.Everyone says "wow..one year time passes really fast and so on...." But I think not a single day has gone by that I have not tried to learn and practice the lessons I have learned.Life is a mystery. I get burned if I try to peep ahead or plan ahead. So the one lesson for sure I have learned: Take Life one day at a time"
When I tell Janvi that we will do this tomorrow..for some reason I stop, go back and do it the same day...for tomorrow never comes. I have my present in my hand. I will make my present a gift to myself an Janvi so that she can cherish her yesterday as a present too.

Please pray for my daughter whose results are due soon and please pray for my mother whose results are due soon and please pray for me whose life depends on these two.

Manu

Wednesday, January 5, 2005 7:27 PM CST

DAY 180

Its really really COLD here in Dallas( 32degree) today.After getting used to 65 and more...its not fair. But it finally feels like winter. ..we all want to stay warm and cozy inside. Janvi is doing well. Her next check up will be with Dr Martin on Monday. Wow...6 months.
I am nervous but satisfied. Her school and classes are going well.
Finally the Kid inside of Janvi has decided to step out. After meeting her few friends, the X-mas fun and her feeling good physically has made her come back as true JANVI. For those who really know her..she is back to the LION KING craze. Janvi has been crazy for Lion King since she was 2. She thinks that we got wooden floor because we want her to stop playing Lion King. But now her answer to me was," Mom, my platlets are good..so I am and will play Lion King without getting a bruise!!" How can I stop her after that.


Even though life is good and slowly getting back to normal, I am not able to comprehend the news about Ryan. On Jan 1st, at night Kim called me to tell me about Ryan. I had no words of comfort for Kim for I was hurt myself. Ryan and Janvi have been very fond of each other. Janvi has been making a 550 pc puzzle for Ryan for last few weeks. But has been stuck and unable to solve the puzzle. I know why...this puzzle had a very different solution that God only knew. I hope Ryan is happy since he is pain free. Please pray for his parents to deal with this.

I will update after getting back from NC.

Stay warm !!
Manu

Saturday, January 1, 2005 0:01 AM CST

Wishing everyone a Very Happy New Year!!
As I sit and look back at 2004,it seems like the year had so much to offer to me. It made me learn very precious lessons of life, it made me show true meaning of being a mother, it proved that Janvi is the single most important thing in my life, it made me meet so many beautiful souls that live in a similar situation of life like me, it gave me the oppurtunity to make some new friends and value the ones I have.
Janvi, Bobby and myself are extremely grateful to all of you who have taken out time to pray for Janvi and have kept us in your thoughts.
She is doing good and getting better everyday. I hope and Pray that God has good things in store for her ahead.
With good wishes from the shahi home
Manu

Friday, December 31, 2004 9:39 AM CST

Well Last one for this year.
Medical Update:
We had our clinic day yesterday. Her labs look good and normal. She has been having few issues like
Nausea
Headache
Dry Skin
Mild Case of GVH
The doctors are happy with the way we are keeping her well lubricated.Nausea can be due to flagyl or GVH.
We are going to Duke for her 6 month checkup on the 10th of Jan.More to come on that front later.

Janvi Front:
She had a great visit from one of her all time favourite nurse Cara from Duke. Her parents live in Dallas so she got to spent evening with Janvi. Needless to say Janvi had a WOW time with Cara!!
Her Xmas was good. She got a pretent mom and baby cat/kitten from Santa, Clothes, toys,movies from family and she had asked us for Gift cards to few stores.She is waitng for Dr Martin to give her yes for shopping and she would love to go for a spree with mom!! Ofcourse I dont mind...lets check with dad credit card first?????

Emotional Front:
Last year same time I was at top of the world waiting for Jan 13 for Janvi to finish her ALL treatment. I was happy and had a great New years Dance to celebrate.Its strange that I am smiling again today, happy and thankful to God for giving me the strength and the circumstances that I can smile again, I can dance with my daughter again and celebrate the new life He has given her this year. One way to look at 2004would be...Gosh what a year I hope I never have a year like that again BUT I want to look at 2004 as a year that gave Janvi and us as parents new life and a new child.
There is nothing wrong with the year 2004. Its has showed me more,loved me more and given me more than any other year so far. It gave me my daughter back...she was born again in 2004!!!
I hope and Pray all moms and dads ,grandparents and sibling have a great New Year filled with love and peace.
Shahi family.

Manu

Tuesday, December 21, 2004 8:56 AM CST

It has been beautiful in Dallas these days. Yesterday it was 72 degree but they say all good things come to an end. But who wants a warm and sunny X-mas.
It was our Monday clinic day too. Her labs looked good and normal. THey reduced hee cortef too. Since she has been having very dry skin with lot of itch and at times redness, Dr Howrey things it might be a mild case of GVH. I am soaking her with lotions but poor girl itches from head to toe. We are down to our clinic visits every 10 days now. I hope that works.
Meanwhile Janvi and myself are pretty much home staying very busy with school, piano, craft and having fun. We are using this time to our advantage and getting maximum fun out of the situation. Our outings are usually Bobby and Janvi in the car playing games while I go run to the stores.THis is a new way and we like it.
Thanks to all of you for sending Janvi and us the gifts and cards filled with love and blessing.
I hope all of you have a Merry Christmas and lot of happiness.I hope this year Santa makes all the kids really happy.Our tropper from Florida, Kyle really needs magic in his life at this point. He is in PICU struggling and has a wonderful mom filled with strength to take care of him. Please pray for him and visit his website. ( WWW.caringbridge.com/fl/kyle)


Merry Christmas!!!
Manu

Monday, December 13, 2004 4:48 PM CST

Day 159
We had a Monday clinic visit today. Dr Granger is happy with her results. The labs were in the normal range. She stopped her Blood Pressure medication also.
Janvi has been having issue with dry skin but that is something we can handle.
We are ready for Xmas with all gifts under the tree. Its been beautiful here in Dallas ( Sunny and 70). Janvi got to meet her friend again this weekend.
On parenthood front I having to deal with a Jr doctor in our house. She is over protective and extra careful about what she eats and who she meets. Everything she eats has to go thru sodium and Calcuim inspection.Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, vision cleared, ambition inspired, and success achieved.(Helen Keller) Well thats good!!!I just cant cheat!!!
Though the malls and the houses are filled with laughter and joy, I am happy to be home with my family...I really want and will always pray for those who are still at Duke to have a good Xmas. Hope there dreams and wishes come true. Hope the magic happens in their lives and Santa makes the kids ( Ryan and Kyle) dreams come true soon.
I hope everyone can remember what the meaning of Christmas is... It is tenderness for the past, courage for the present, hope for the future. It is a wish that every cup may overflow with blessings rich and eternal, and that every path may lead to peace and good health.
(Agnes M. Pharo)

Manu

Wednesday, December 8, 2004 9:32 AM CST

Monday was Janvi's clinic visit at Cooks. Her counts and chemistries were in the normal range. Thank God for that. She had a good piano and art lesson on Tuesday. Its amazing how much she enjoys piano.
Yesterday I got a break and went out for lunch with my friends to my all time favourite resturant Carinos. It was a short and sweet lunch break. ( did I mention I got 6 calls from Janvi in 2 hrs!!!)

Janvi's spirtis are high and she has a good outlook towards feeling all better. She has been sneezing a bit since last night but has been extra careful regarding taking care of herself. From Chicken soup to washing hands after every sneeze....she wants to feel all better soon.I am sure she knows by now falling sick is JUST NOT FUN.

Nothing else from this end. I hope everyone is in the holiday mood. If you are home and with your family dont forget to pray for those who are still waiting for a miracle to happen that they can be home for X-mas....especially for our trooper Ryan....please pray for his family.

Manu

Sunday, December 5, 2004 9:49 PM CST

A quite and long weekend for us here in Tx. Janvi had few visitors this weekend that made her smile and have some fun. Most of them were adults but thats also FUN for her these days. Last night Janvi Friend Tushar, his grandparents came to see her. They have been a big support to us during the difficult time and Janvi calls them " American Grandparents" since they live in USA while rest of the granparents are in India. Her friend Raashi was a delight for Janvi. It was a short and sweet visit.
Today Berta ( from Make a Wish foundation) visited Janvi. They had so much fun playing. Infact Janvi wants her to be a regular visitor at our house now. She really enjoyed playing Operation Shrek with her.It was very surprising to see Janvi talk so much about her tranplant with Berta.
Later in the evening Janvi got another surprise. Around 8pm her friend Anushka surprised her with parents for afew minutes. That was really nice to see both of them meet. Both of them are the biggest bolloywood fans and they enjoyed watching songs from the movie "Dhoom"
Now the princess is fast asleep.
Tomorrow is a clinic day and this is the first time we have gone without getting her counts in one week. Hoping and praying for the best.
Our friends Kim and Larry are having bumpy time these days. Those out there who are great cooks, please visit Ryans website (www.caringbridge.com/va/ryansmedley) and contribute to the cookbook.
Good night from Flower Mound.
Manu

Saturday, December 4, 2004 7:07 PM CST

The weather has been very nice in Flower Mound. We have been trying to take Janvi for walk during the daytime. Our tree is up but outside lights are still pending. Gifts are wrapped but Janvi still has not given her wish list to Santa as yet.She had another palydate with her another best friend Rashi. It was so nice to see them laughing and playing. God Bless them.
I have organized and over organized the house so many times and I know why…I am scared and I want to give my best in taking care of Janvi. I have realized that the journey of transplant has several stages. Once the child is home and 100 days are over the next few phases begin. The transplant is not only of Janvi bone marrow, it’s for us to transplant or convert our life too. It’s the transplant of parenthood, our marriage and every single relation. Staying with me for such a long time Janvi and myself have become dependent on each other for lot of things. I am so focused on her medical stuff and "I will help you" attitude that I forget that she needs to learn herself too. She needs to be strong in all areas.

But today I feel that Janvi needs to learn how to survive on her own. I feel not only for Janvi but all the kids who go thru transplant should learn and know how to survive on their own. I feel that this time at home with parents should be a training period for learning the “survival of the fittest” I vision these kids to be independent, confident and strong when they come out after one year. No one needs to show sympathy to them or feel sorry for what they went thru but these kids need to step out with a bright ray of sunshine for this world. They need to show how you live life to the fullest.
There is no doubt that staying with adults for a long time, kids loose their age related innocence which you wish and you know will come back when they start meeting kids. But I often wonder if Janvi will be a 5 yr old or not again. I have accepted the fact she will be a bit different, her interest would be hopefully healthy and her point of view would be stronger too with a heart more sensitive. If that’s how it will be then I love it!!

So I promise myself and want one from you to encourage these kids to be strong and have a stronger outlook towards life. To be independent and have a feeling of FREEDOM, they have done no wrong in life but have taught from the very beginning how to live. So now its there turn to live.... no matter where they are, no matter how far they are from transplant, in the hospital, at home or school one thing they will always have is smile, pride and dignity for who they are and what they will be in life and we will make sure of that too.

Few of our troopers are soing good and some still need those good vibies and prayers to fight harder. One such trooper is Ryan. So please pray real hard for him, for his parents and for the doctors to give them all the knowledge they need to fix it.
Good Night from Flower Mound
Manu

Tuesday, November 30, 2004 11:07 AM CST

Day 141
It was cold rainy Monday in Flower Mound. We went to the clinic for her check up. Her labs came back in normal range but still has the diarrhea. I have given the stool for C-Diff test. We have a break till next Monday for the clinic. Lets hope for the best.
Meanwhile Janvi and myself have been busy wrapping up the X-mas presents for family and friends.
Insipte of keeping myself busy I have something disturbing in the back of my mind. On Sunday I got a call from Kim giving me the heartbreaking news that Ryan had relapsed. I had no words of comfort to say to her as I was too disturbed. Kim and Larry have had the most positive and upbeat attitude towardes Ryans cancer. God cannot give them more than what they can bear.
This news tells us that nothing is for granted in life. Life can melt away from our hands in matter of minutes, it can slips away like sand no matter how hard we try.
Please pray real hard for Ryan and his family. If you can post a message on his website to cheer up the little cowboy.

Pray hard ...pray for these little ones ....
Manu

Sunday, November 28, 2004 10:34 AM CST

Saturday, November 27, 2004 4:06 PM CST
Seems like everyday has so many small things happening in our lives that I am getting wrapped up in it as we move ahead in life. The bright side is we are moving ahead and the speed does not matter.
Well Wed was another eventful day when Janvi starrted to complain of Headache. We watched and waited from 5:00pm till 12:00am to see if it goes away. Well NO!! So we spent the entire night till 5:30am in ER. All she had was high BP. I am always extra careful with Janvi espcially with a head issue. Now we know her headache is realted to High BP. One issue resolved.
Thur: Thanksgiving!!
Well we did not plan much but Janvi was surely excited for the turkey day. But she had egg and bread for breakfast. That did it...she started to feel funny in her mouth, she threw up and started having stomach ache.
Its Sat, she still has the loose stool so she is back on her BART diet.Has cramping often and we give her Bental for that.
Thats was the medical update.
Janvi has been kind enough to ask santa to give her a gift card this year as she does not want ANYTHING. Well Santa..good for you!!!
Janvi enjoyed the company of her cousin who is studying here in Dallas. They went for walks, go -kart( her own) and played games. Her friend Saanika came for two hrs to play with her but at the end of it Janvi was tired. SHe is sleeping right now. I think the loose stool is making her tired. Looking forward for her counts on Monday.

Even though we are home life is pretty hard for right now. When I was in NC, it might seem strange but I had more time with Janvi. Being back home is not the same anymore. I know my friends in NC will laugh at me for they would do anything to be back home. But staying indoors, keeping Janvi busy, keeping the house clean for her, her medical stuff need extra attention and staying healty...it does add to be a lot. The long road of transplant seems to have days when it looks smooth and wide. Then there are days it looks so narrow and bumpy that I feel congested and tired. I look for a break ..a tea break maybe..but then I look at Janvi who has not complained in 5 months and I feel small. I know I need a break from giving her medications or taking her to the doctors....but Janvi is my biggest source of inspiration.
Life goes on no matter what, the lesson I have learned and need to practice more is to priorties. Its the most difficult thing for me is not be organised. But I need to change.Now when Janvi says mom lets play, I look at the kitchen and the sink full of dishes and say to the dishes..." You have to wait for the princess is calling me now!!" I have learned to say NO to myself and yes to Janvi. Beacuse Janvi said she choose me as a mom from God because she thinks I am special. I cannot let my child down.
You too!!Live upo to the expectations of your child instead of having your child live up to yours.

Tuesday, November 23, 2004 4:11 PM CST

It has been raining a lot here in Flower Mound but I am not complaining for I have nowhere to go. Janvi and I are pretty much home all day trying to stay busy with activities. She had a clinic day yesterday. All her counts were on slightly on the lower side than where she has been lately.
We have found some new stuff in the grocery store that has magnesium. First goal was to make her stool firm. That is a success now after forcing her to have one yogurt a day and add Ben fiber in her food.
Smoothies, Soy Milk, tofu, orange juice and Evian water have Mg in it too.
Janvi’s school is going good. She is in the accelerated reading program. She is also enrolled in Piano lessons. Bobby bought her a Casio keyboard this weekend.
Janvi got to meet her best friend Sanika this weekend. The first thing she wanted to show her was her noodle (central line). It was very emotional for me to watch her play. I always imagined her playing with friends when she was at Duke.
I miss all my NC/ duke family a lot. I feel a part of me is always there with the families. As time passes by and things get back to normal at home, I will feel more comfortable but a big part of me will always pray and belong with the families at Duke...who are there now and will go there in time to come. I will always pray for them to be healthy and strong. For God to give them His blessings. For God to give them same special friend and family he gave me to make this journey little more comfortable.

Manu

Friday, November 19, 2004 10:37 PM CST

Yesterday was our first clinic day at Cooks. It went smooth. They did her labs which came back normal. Now she has to go on Monday for her checkup.
Janvi is doing fine in school too. The teacher comes from 9-11 twice a week and they do lot of fun stuff-songs, craft and of course studying. I guess staying in the company of adults for such a long time Janvi has picked up lot of stuff about life.
Her maturity level is pretty amazing to me and to her teachers too. She will start piano and art week after thanksgiving.We went for a first evening walk in the community yesterday wvening. Janvi loved it!Hopefully she would be able to ride her scooter soon too.

That’s all from my end. Let me leave with a note verbatim of what Miss Janvi said:
“Mom, dad has to work really hard to earn all the money. He does that so I can get my treatment, we can eat food and have a house to live in comfortably. You buy too many clothes and toys for me all the time. So next time buy only when I do something good..like a chore or really deserve it. Else no more buying for me. I need to say thanks to Mr. Mike and Mr. Kevin (Bobby Manager and VP) for letting dad come with us to NC for my treatment...ok!"
PS: I am the mom and janvi is the kid....how we switched places???
Well have a good weekend and thanks for the prayers for Janvi and her friends.

Wednesday, November 17, 2004 9:30 AM CST

We were set free from the hospital on Monday afternoon. Janvi is feeling better now. We had our complete 24 hrs at home. She slept in her room after 5 months. WOW!! Thank You God.
I had major clean up to do in the house, laundry to fold and her school stuff to set up. Janvi has a homebound teacher that would come Wed and Fri from 9-11. Her clinic days are Mon and Thur. That should keep me busy. Her lines are feeling better too.
The discharge training at Cooks was really good. They are so careful about every little thing that it’s amazing.
The house is feeling like a home now. Janvi’s giggles fill up the house really fast. Its gives me the chills to recall circumstances we left the house. We thought our life would never ever be the same. That’s true..for I see a miracle walking and talking in front of my eyes 24/7…its is not the same. I thought miracle’s don’t happen.
Janvi has grown up so much over the past 5 months that she calls her self a teenager. She told me the other day that she believes in her name " Janvi" which means a magical river and she is a messenger of God who is here to teach magic and show strength to other people. Of course she asked me why I believed Manu??? I have no clue!

The little time I have had to myself, my heart still thinks and feels for Hunter’s family. I pray to God to give Amanda and Brandon strength and courage every single day.

Cooks has been a good choice for us. I have met another family having two sons and both had ALL followed by Monosomy 7. Another family whose daughter has MDS with monosomy 7.The doctors is good and child life is really good. (Did I mention the food!!)?

Her labs are looking good so far. Everything was in normal range. Her immunity test results were back and looked good too.
I have never thanked Lord so much as I do now. I think Janvi was destined to go thru this rough time but God showed us the light that lead her thru this journey. It’s amazing that under worse circumstance if we want we can always see some light of hope.
I pray that God gives strength to everyone to see light when the darkness arrives. To see purity of the flakes when it snows, to hear music of encouragement in the rain, to feel warmth in the sun and to see the hidden power in your heart all your life.
Manu

Saturday, November 13, 2004 8:37 PM CST

We are still in the hospital but things are getting better. Janvi is feeling better too. Last night around 11pm her IV stopped working. We had to witness the torture and be a part of it one more time. They tried poking her two times with no success. We both could not see it anymore as Janvi was crying and trembling in fear. She is such a good listener but the nurse could not get the right vein. Well we told the nurse to call the doctor on call and schedule a surgery in the morning. We wanted her lines in first thing in the morning. That’s what happened. Her lines are in and she is sleeping right now. Her labs came back normal after a long time. So we will watch her for two more days in the hospital. She is feeling good to have her right hand back.
As I was typing this journal I got a call from Kim to inform me that Hunter got his angel wings this afternoon. Lord opened his gates for him since it was time for him to go to Heaven and play with Folden, Kristi and other kids.
I still remember the very first time we met Hunter, Amanda and Brandon in the clinic. Janvi and Hunter started the transplant journey together. Both, same age, only child and smiling. Janvi considers Hunter to be a good friend. I met Amanda before we left Duke. We spoke for a long time regarding her journey as a mom. But in a situation like this everyone has to deal with its own grief and wipe its own tears. This path is dark and scary, bumpy and stormy with few days of sunlight. And those who see sunlight in the end never forget the people who gave company in this journey but had a different end
I will always have lot of respect for all the parents who walk this path holding there kids hand not knowing that when they finish the race , they will be alone or with their child.
Please visit Hunter website at www.caringbridge.com/nc/hunter and post a message for the family.

Manu

Thursday, November 11, 2004 12:31 AM CST

Place: Cooks Children’s Hospital, Room 3003.
Janvi has two bacterial infections she is fighting at this time. One of them is a very stubborn bacteria. She is on two IV antibiotics
Miss Magnesium: She has been on 12 hr IV mag at night (1500ml) with some saline.
Monday: they have planned a new central line, single line this time. Hopefully then we can plan on going home.
Janvi has been going out on pass for last two days. One time we went home and the second day we went for a drive to downtown fort worth.

Last night was kind of stressful. I went home around 9pm and was trying to clean the house for Janvi was planning to come home on Thur morning with Bobby. Well by the time I slept it was 12 and I was regretting being up so late. At 2am Bobby called saying Janvi has a headache and is throwing up. Well this condition was on and off till 6 when she finally slept. I was all ready to leave at 6:30 that Bobby told me that they plan to sleep now. Well not for too long!! They had to do the butterfly poke to get some blood work. (Please take good care of those noodles ….its no fun getting poked) Of course .. had to be present to witness the poke are still waiting for her results. I will update the new roadmap later. Dr Martin has asked the doctors to do another blood test for bacteria.

Well Her counts just came back..seem like her mag is ok at 2;potassium at 5.9 and sodium is down to 128. I am waiting for the doctors to tell me the plan. Hopefully they will reduce her IV as she has a history of fluid retention, start oral mag.

Well, as far as Janvi is concerned, she is her usual self. It breaks my heart to see that even though she is so close to home she is not home. We both are hanging in there too.
The transplant journey is a long and stressful journey for the family. As a couple, I feel both of us have gone thru so much stress that the normal stress of life is easily ignored. The depth of understanding is better and deeper than ever before.
My heart bleeds to see her bleed every time she gets a poke. She has become brave enough that she says it does not hurt but she is afraid of something. I have not been able to put my finger on it, but I know she trembles with fear..
Only if I could have the power of a super mom to stop all of it and answer the question her eyes ask me all the time. Every time she asks me "mom have you had a IV on your hand..it really hurts" or mom did I have cancer when I was born? I don’t want to walk this path but He has not left any choice for me either. I don’t want her to be in the hospital but He has not left any choice for her either.
But the bright side is we are still a family...better than any other family who has been separated due to some useless materialistic issues, I still have my daughter in front of my eyes and I have my husband next to us. To make the best of what I have in my hands , I would hug both of them, close my eyes, and cover my head till this storm is over. While the weatherman, HE can stop the storm for good. And those who read this journal, some of you have a storm of your own and while other might be just well protected ….Don’t forget to send good vibes for my daughter ..for she needs to go home now.

Well “ Happy Diwali” to all my friends from India. Hope this festival of light brightens up your life with love and laughter with a good health.
Manu

Sunday, November 7, 2004 6:23 PM CST

Day 123
Place: Cooks Hospital, Fort Worth, Tx
Room :3003
It is our 4th day in the hospital.It was a comfortable night here at cooks. The rooms are big and the staff is great. ( Duke Friends: the food is very good. The whole tray comes wrapped in a plastic cover and the homo/onco have a seprate kitichen. Seems like one of the patients renovated the ktichen espcially for these heros)
I went home this morning to finish opening up the boxes before Janvi comes home. Its surprising how much stuff we accumlated in 4 months in NC. Well I was there just for 3 hrs that Bobby called that Janvi infection is called Stenotrophomonas.So in a hour that takes me to reach from home to the hospital, they had already hooked up Janvi IV on her RIGHT hand. ( Well she is very disppointed that she wont be able to make puzzles or do anything since its her right hand) As soon as I reached the hospital , the surgeon was there to pull the lines out. When I say pull..they just PULL...ya ouch!! But its sounds worse than what it is. Her mag was down to .8 this morning. We are blaming it on her antibiotics more than her kidney or FK506. Now they have stopped one of her antibiotics and maybe put a new line on Wed.
We are doing okay. We have been blessed with great friends who have been checking on us and have been stocking up our fridge. Geeta, Sonal and Dolly thanks for cleaning the house and making food for us. The prayers and good wishes from our family and friends are giving us the good vibes and energy to keep on going.
Manu

Saturday, November 6, 2004 11:02 PM CST

Day 122
Place: Cooks Children’s Hospital, Room 3003
Another day another night at the hospital. I was home for the most part of the day. Did lot of unpacking and cleaning.Bobby took good care of Janvi. Dr Granger stopped her IV and its a wait and watch period. We are still waiting for her cultures to come back negative. The two deciding factors for us to go back home would be her infection to clear off and her magnesium to go up again. Its a wait and watch time!!!!
It’s nice to be back in Texas ..one step closer to home. They say take one step at a time.
Meanwhile I think I am recharged again, ready for the next chapter. I need to believe that this whole experience is purifying her soul to become a better person in this world. Meanwhile, they plan to keep us in the hospital for a week, I brought enough stuff for Janvi.
She is back to her normal self...meow and roars. I think she has charmed few of the nurses already here. The homebound teacher has given me enough stuff to keep her busy.
I miss my friends now family at Duke....I hope they are doing well.
I will post when I have some more answers.
With dreams in my eyes and hope in my heart. I sign off.
Manu

Friday, November 5, 2004 3:17 PM CST

Day 121
Place: Cooks children Hospital, Fort Worth ,tx
Admitted in room 3003

..and we slept and slept and slept. After being up for almost 40 hr we all slept. Janvi is feeling better than yesterday. Her counts were ok. The doctors feel that since we caught the infection so early and she did not get any fever, her count stayed stable.
Her mag and sodium is still low. She is taking the new mag medications so hope it works. Dr Howrey plans to make her mag stable and give her atlest a 7 day course of antibiotics.At that point they will decide that if they would take the lines out and put a port in or leave it the way it is for now.
Yes this definately not what i had wanted for Janvi. I wanted her homecoming to be fun and fun and fun. She has started to like the place a little bit. I think she is getting a bit too much used to the hospital environment and feels comfortable. I need to get her used to home. Please pray that she can go home healthy soon.
Manu

Thursday, November 4, 2004 3:44 PM CST

Thursday, November 4, 2004 2:10 PM CST
As I type this journal today I don’t know where to start and what to type. In the life of a transplant patient so many things change every second. In fact as I type, things can change.
After meeting Dr Martin on Monday, we packed our bags, cleaned the apt and checked into the hotel near the airporton Tue for our flight onWed Morning. I am so grateful to American Airlines for making our journey so comfortable. I had spoken to lady at AA who happened to be from North Carolina and was a supervisor too. To make sure that Janvi has a comfortable flight, Vivan booked her to fly first class, made admirals club her waiting area. Janvi was last one to board the flight and first one to get down. Through out she was sleeping except for the last 40 minutes. Thanks American Airlines!!!
My friends Dolly, Geeta and Sonal were there to receive Janvi. It was cold.... they said we brought the cold weather with us. The first thing Janvi said while landing was," I miss Dr Martin and the fall colors mom."
Well reaching home was lot of excitement for Bobby, even more than Janvi. She had very mixed feelings. Its very difficult for me to say what she was going thru as it can be fear, retrospection of her past days before and after going to Duke. Her life has changed...only if she would tell me in words than actions.
We unpacked our overloaded bags and were trying to settle down. Around 10pm after flushing Janvi lines, she had the chills. It brought back a very scary memory for me. I called up the doctor on call at Cooks. It was Dr Granger who told me to bring her to ER right away. I paged Dr Martin who also told me to take her to ER. Well our first night back in Dallas was in the hospital. We reached at 12:00am and she got cultures drawn right away. It was the first time for us at Cooks as we have never been here before. It was nice of Dr Granger to come and see Janvi. (She used to work at Children’s in Dallas and was the fellow on call the day Janvi got Dx with ALL in 2001. She works at Cooks Fort Worth now)
by the time Janvi was done with her antibiotics, it was 5am when she got a room. Bobby left for home, as he was also very tired. Janvi was tired beyond words. She has been sleeping..sleeping..sleeping. Her blood work came back positive with the same infections she had when she was at Duke. To add to this, her double lumen is not working.
That’s the news so far....
Yes Dr Howrey is taking care of her. (He is from DUKE too now working at Cooks. He used to work with Dr Martin and is familiar with the way Duke functions) He is a great doctor too. The way this place runs is different from Duke, They have only 4 kids in the unit. But it’s very clean and nice. (FOOD is good)
I am again low on battery..tired, angry and without words. This journey has taught me a lot but one thing I cannot do anymore is have expectations from Janvi. She is a great listener and does everything we ask her to do in order to get better. She is getting better but with bumps every now and then ...I wish I could say what I believe in and that is "I am stronger than any hurdle or a bump that comes across my childs path. I can beat it. But today is not the day for me....I need to catch up on my sleep. I have been up for 36 hrs .If the doctor, child life and other people can stay out for few hours I can catch some sleep.
So, Welcome Home.... this is just a phase, that’s how the new chapter begins, but the hope inside me marches ahead of my fears, the faith inside me is still ahead of my long list of discouragements and the good wishes of my friends and family is more than the bumpy days in our life.
Keep those good vibes coming, as we need it more now than ever before.
Manu...signing off ..first day in Dallas

Monday, November 1, 2004 10:10 PM CST

Medical Update:
It was very nice weekend weather here in Durham. We had to drop labs only. Most of the chemistries were down for Janvi. We worked very hard on Potassium and Magnesium. Today her labs were the same. But her Magnesium and sodium were down.
ALERT: She had a small reaction to IV Mag (have I heard that before: No) She was fast asleep when I hooked her up to the IV. Within 40 minutes she woke up crying with her throat pain. I saw her lips were swollen. We gave her antihistamine and she went off to sleep. Ann told us to throw all the IV magi that came in that batch. Next time they will give it to her under observation. (It’s a good note to those who give IV mag at home.)

Janvi's trick or treat:
She did that in the clinic on Fri. Yesterday it was nice to see Janvi sooooo concern about me. I was fasting till moonrise. She wanted me have something to eat or drink. I asked her why was she so concerned and I heard" IF something happens to you mom then who will take care of me" I felt so important and well what can I say!!!

TREAT:
She got a nice treat from Dr Martin this morning. He took her off the IV antibiotics. He also said it was okay for her to plan to head back home. That’s all I can write, as Janvi will not allow me to say anything else.

Thanks:
I wanted to thanks all the people at Duke, from doctors, nurses, child life, pharmacy and staff for taking such personal care of Janvi. You are the BEST..We are so glad that we choose Duke.
All the families that I met at Duke:
Each one you have left a strong impression on my heart and soul. This journey would have been very difficult without the support of your shoulders.
The understanding heart, the smile behind those sleepless eyes, the courage to wipe my tears when you had enough of your own and hold my hand when you had yours to be held too.... you are a big part of your family. Please stay in touch as this touch makes all the difference.
Mary Ellen, Hope, Kim, Lynn, Brandy, Lori, Amanda, Meredith family, Mark and Lisa. and everyone that I met at 5200 or clinic...thanks for all your support.
I the circle of life, we will meet again under better circumstances.

No, this is not my last update..It’s just that as we move on in life we don’t take out time to say thanks to those who make a difference in our lives. We take them for granted. We will say thanks to a complete stranger who gives us way but not to those who have changed their way for us or who have stopped so that we can move on..Our family and friends.

Maybe this would be my last update for this chapter of my life. As I open the next one, I will be back to update you about Janvi as she continues her transplant journey in the Lone Star state.
Pray for us to reach home soon...pray for all the kids to go home soon.
Manu

Friday, October 29, 2004 9:37 PM CDT

Trick Or Treat!!!
It was a colorful day at the clinic this morning. All the nurses were dressed up and the theme was.."DISNEY"
Janvi was dressed up as a princess too. Well sometimes you have to keep your reputation and image.
The different thing was we are on Contact Isolation...that was the only costume we had not tried in our 4 month journey. SInce Janvi came postive with C.Diff infection,we need to protect others. So we were a yellow gown,gloves everytime we leave the room. Its a pain since we have to wear it every single time we leave the room..did someone say room.Yes the good thing is we get a room as soon as we get to the clinic.Everyone thought we were dresses for Halloween but no were in isolation.
Well her labs looked normal..I mean magnesuim was low rest things were ok. She has been off oral mag for last 3 days due to dierrhea. I started the oral mag today as Dr Martin wants her to be off IV mag soon. Besides that she is on two anitbiotics.One of them is three times a day IV.
Rest things are the same. We have labs only tomorrow.
Weather has been cloudy but not that cold.We have been enjoying our walks these days since in Dallas its still 85 .
Waiting for our meeting with Dr Martin on Monday to decide when we can go home.
Thanks Jennifer for your lovely tokens for Janvi. She really enjoyed it.
Closing from Durham on another Friday evening.
Manu

Wednesday, October 27, 2004 8:55 PM CDT

Our day started a little early today or should I say the night was too long. We slept past midnight, as we wanted Janvi to stay up longer. She had surgery for line scheduled for the afternoon.
Medical Updates:
We woke up at 3am as Janvi was having a stomach pain. She went to the bathroom couple of times and finally went off to sleep at 6:30am. We dropped the labs in the morning and were getting ready that Janvi woke up at 8am crying with pain. In 30 min she went 7 times to the bathroom I took her to the clinic. She went few times there too. It was more of the stomach cramps that made her go much. Her labs came back normal. Seeing her in pain at 11:00 am, we decided against the surgery that was due at 12:00. We thought that this is something we could get it back home too. It was not worth taking the risk and Dr Martin and Lauren were on the same side too. Janvi got Metronidazole, dicyoclomine and some IV mag. She slept for few hours in the rainbow room. This can be due to the antibiotics she has been on since her line infection. Today was her last day of the antibiotics too. The doctors have sent the stool sample for test. Right now she is on few extra medications:
Vancomycin (4times), Metronidazole (IV push 3 times), Dicyclomine as need be basis, IV mag (no oral) Hydrocortisone IV for 2 days along with her other medications.
We got to leave the clinic around 3 in the afternoon.
This is us:
Bobby has been dropping and picking us up from the clinic. He has been very busy at work lately as he has been putting in lot of extra hours. I really admire him for working so hard in this situation. It is due to him and the cooperation from his company team that he could be with us all the time. Thank you God for having him work with such understanding human beings.

Janvi is doing better from where she was. No stomach pain but I am keeping her on BRAT diet for 24 hrs.

As for me, I am low on my energy and feel that this machine named my body and soul needs to be recharged. It needs battery to function. Sleep is one of the type of battery required. Above that I need some boost to continue on this road too. I keep getting these detours that I am not aware of in the journey. It’s a long road ahead and I don’t see the end of it anytime soon. I am not supposed to as I signed a clause :"One day at a time"
Gosh cant even plan more than 24 hrs..not even 25 hrs. When I see other moms in the clinic who have been up all night and still up..Fighting..Its strange it gives me some charging to keep going. I asked Janvi today to give me one reason I can smile about and she said, " Me Mom"
As long the fight is for my daughter, I will keep on fighting. As long I have her hand to hold on to at night, I will stay awake all night, as long as I have her, she has me.As long as she has me I will make her shine.
Manu

Monday, October 25, 2004 7:51 PM CDT

Day 110
Another long clinic day today. Janvi was to get only pentam today but by the time her school was done, Lauren came to see her and then Dr Driscoll we realized we had been there for 4 hrs. Dr Martin is in-service this week. All her labs came back normal except Mr. Mag. We gave another IV dose at home and her oral has gone up to 800mg, 3 times a day. Well those who don’t know that oral mag is easy to come out undigested , a complete waste from your stool and to add it can give diarrhea. Yes that would make all the electrolytes to go waste too. It’s a loop and we have to keep chasing one electrolyte and then other getting upset...insecurity issue for the electrolytes I guess???
The talk of putting her port is back. It just brings back so many memories for me. Janvi had a port for almost 3 yrs. The lines make it easy since there are no pokes but are high risk for infection. While port is easy to manage, is under the skin and she can take a proper bath (sit in the tub again pretending to be a mermaid) But the hard part is she needs to be poked every time they access the port. We do put emla cream to make it numb, but I have to become strong again to see the pokes. It was a very difficult battle for me to get Janvi port accessed when she previously had one. Everybody at Children’s in Dallas can agree on that. But I think Janvi has come a long way and is very mature. I hope this time she will cooperate with me and make it less painful.
Our life for last 3 1/2 yrs has been planned around Janvi doctor appointments and her medical treatment. We all have come a long curvy road with blessing and good wishes of family and friends. Please continue these wishes and we can win the battle.
Do keep all the kids in and out of 5200.




Manu

Saturday, October 23, 2004 5:56 PM CDT

Day 108
A very nice morning here in Durham that ended up later to be very quite and little cool too. We stayed home for the most part and later went for a walk to Duke Gardens. She got a day off from the clinic today.
Nothing else medically to update.
It is so quite here in the apt and in the area in general. No phones, no visitors and no traffic. The only thing I can do is get in touch with myself and unfold the mysteries of life and realtionships. It gives me the time to appreciate friends and family as I have time to do that now. But most of Janvi..I am learning everyday from this little girls. Well the best part is these days Janvi gets very upset if anyone eats chocolates and Ice Creams. She gets MAD!! Well lot of things have been driving her crazy these days..trash on the road,unhealthy stuff, if we say we need to buy something ( she goes " Can't you be happy with what you have"), if I rush stuff she will tell me "calm down mama..have patience.
I feel I have learned a lot from here in these circumstances. Now I think that the reason God brought me to this was to learn a deeper meaning of LIFE. I feel Janvi and all these kids at Duke have touched everyones heart one way or another .Today, do remind yourself the lesson you have learned from these troppers before you sign off from this website. It would be great if you can share it with everyone who reads this website.
With love and Blessing from my heart
Manu

Friday, October 22, 2004 7:59 PM CDT

Day 107
We woke up this morning with a call from Ann (NP)that her counts were low as she had Hgb of 6.5 and plts of 20. They wanted to recheck her counts. Beleive me It was aftger a long time that I felt as the earth was moving away from me and the whole new world I had built in last 4 months was falling down.We rushed to the clinic. The logic was her bacterial infection can do that to the counts. But I was not ready to hear anything.
When I reached the clinic i found out that it was a error and her plt were 113.( Sodium 136 but mg and potasium was low. So we are giving her mg thru IV on need be basis.) That provided lot of strength again. Dr Martin wanted her cultures to be drawn again. Her Hgb came back as 8.5 too. So everything was a false alarm.Seems like when we draw blood we need to make sure it is thick and really red. ( it looked really diluted this morning)
Later this afternoon, Dr Martin called back with her Chemirism results showing 100onar cells. Thank you God.
So for now we wait for the antibiotics to finish, her surgery to be schdueled and life to move on.
Another good thing that happened was Ryan is also doing better.
Please continue to say your prayers for Janvi and her group.
It is getting cold her in NC but beautiful with fall colors.
Manu

Thursday, October 21, 2004 8:48 AM CDT

Day 106
Location: Apt
We are finally back in the apt. Janvi was discharged late yesterday afternoon.The doctors have her on 2 anitibiotics at this time.Otherwise we have to go to the clinic today to discuss plans with Dr M.
COming back to the apt made Janvi miss grandpa a lot. We tried out some fun stuff to make her happy. Occasionally she will mention that she is missing grandpa.
I will have more news when I get back from the clinic.
In the meantime please pray hard for Hunter and Ryan who are having there own issues. But both are fighters.
Thanks for checking in on us. We appreciate it from the bottom of our heart.
Manu

Tuesday, October 19, 2004 5:40 PM CDT

DAY 104
Place: Duke Childrens Hospital Room 5106
Okay we have the answers to our questions. Janvi bacteria has been caught and been identified by the specialist and given a name. I have no idea how to even start spelling the identified bacteria. ( Seems like a thief caught by the cops) Well they say this bacteria is sensitive to all the anitbiodies. So they dont have to change the medication. It comes in thur the GI tract and finds its way around and finally got into the plastic lines.
We should be able to go home in the morning after getting flu shots( Bobby and myself).
Dad left this afternoon to go back home. With mom being here in the early part of the year and dad in the middle has been a big support from them to us. They did the same thing for me what we are doing for Janvi. I think it is more emotional for grandparents to see their child as well as grandchild in such a situation. All your life you dream for a good life for your child and not what we are going thru.I could explain in my own way to him that we are okay and better humans than what we were four years back. He needs to have confidence in his kids and give assurance to everyone in India that we are managing fine. I think dad left very satisfied yet emotional.
My cell phone does not work in this room this time.So everyone who is leaving messages ,we are okay and thanks for calling.
Hopefully I will write the location:apt tomorrow.
Manu

Day 103 Monday, October 18, 2004 9:36 PM CDT

Day 103
Place: Duke Children’s Hospital 5106
Day 3
Results: Her all three lines are infected with Bacterial infection. She has Gram negative Infection. The subtype is not identified as yet. It will take another 12 hrs for that to come back. Meanwhile Janvi is on two antibiotics that are rotated in three different lines.
Dr Martin did stop by in the evening to give his input. Now it all depends on her results. If the culture is the type that can be treated with medication it would be great. If not then they will decide if her lines to come out. We are okay with that too as we were planning to put a port instead. So basically it depends on further identification of her bacteria. Her counts have dropped quite a lot which they say is normal due to infection.
Meanwhile Dad is leaving in the morning and I will stay at home tonight.
Hopefully I have more answers tomorrow. Otherwise Janvi is doing and feeling better.
Praying for more better days
MS

Sunday, October 17, 2004 5:29 PM CDT

Day 102
Place: Duke Childrens Hospital Room number 5106
Condition: Stable
Janvi is feeling better. Her fever is under control and her Blood Pressure is coming up too. Her chemistry is normal too.Dr Schboltz says that she looks good. They are waiting for her bacterial culture report.Right now she is on two antibiotics and when the results come back they can do bacteria specific medicatoin. If things grow and they can identify the bacteria we can go back to the apt on antibiotic dose .But nothing is final for another 24 hrs. I cancelled our flight for going back home.Did I say I will take life one day at a time or 1 hr at a time.
I met Kim and Amanda on the floor. We all are fighting are own battles.
Being back in the hospital brings back lot of memories and makes me retrospect the long road I have travelled.Bobby and I have been in the battle since 2001. Thats does seem long. The road is still long. Sometimes I get a feeling as if a magic will happen and time will go back to 2001 . Only Janvi will be 6 not 2 1/2. I do wait for the time where I can do whatever I want with her, take her to all possible classes, eat out, fight , give her time outs...and then I wake up and say..Gosh!! Thats not gonna happen. Even if for a day I do go back to that life I am sure I wont like it anymore.Blood counts, flushes and medications are so much a part of me. I know I have learned a lot from this life experience started to appreciate life more, value time more..but its still not my favourite place to be in. It seems like I took a flight to go to Italy and I have ended up in Holland. Its not by far my first choice. But..what to do??? It was a one way ticket I got and I better start liking it. There are people who live here . There are things that are pretty here too. If I smile at these people they smile back at me. I still dream about Italy( normal life) but I am and will get used to Holland...to the windmills and tulips.IF I want I can be miserable and depressed of not being were I wanted to go or enjoy where I am today.I find beauty in these kids, I find joy when they eat I find happiness when the medications stay down without getting the pink bucket and I find gratitiude I my thoughts for HIM and my friends and family.
I might sound tired and depressed...but I am not. I am trying to make room for adjustment for every day changes that effect Janvi, Bobby, his work and my life. I am really greatful to Bobby's work group for adjusting and understanding our situation.
With hope and dreams of finding more treasure in this life I sign off.
I will post the results when I get them
Meanwhile please pray..pray..pray ..for Janvi Ryan and Hunter....and all the other kids in and out of this floor.
Manu

Sunday, October 17, 2004 11:07 AM CDT

Did I say we were going home..I think I said it too early as we still haven't seen the fall colors of North Carolina. I think God has some other plans for my Janu.
Janvi had chills Fri morning when I was flushing her lines that lasted one hr and rest of the time she was very active. Sat night around 9 she got her lines flushed and had the chills again followed by loose stool. Well we rushed her to 5200 and I was certain at that point that she has a line infection. The doctors have sent her blood for culture and we are waiting for her results patiently in 5106. Dr Martin has told us to get our travel plans postponed for now. I dont have any reports at this point but I will have some answers by late evening today. She had a very low BP last night but slowly its coming up. Bobby is with her right now and I came home for a while and will take dad with me( who is leaving on Tue)
On my way out I met Kim and I saw Ryan was having a seizure and downstairs I met Hunters grandparents and found out that her was in PICU

Well you little soliders...gear up and fight ..the war is not over yet!
We will fight and make it all right soon.
Lesson learned: Never ignore even a smallest symptoms. Its better to be paranoid and extra cautious than being sorry later.
We will be okay. DOnt forget to say your prayers and post your wishes.
Will update the results when I have any
MS

Day 100 Friday, October 15, 2004 3:24 PM CDT

Its day 100 today!!!!
It took us one week to decide something that I am very nervous yet excited about. As of this moment the plan is to leave on 23rd for home. (It will be confirmed when I board the plane) Her counts and chemistries looked normal this week. We finally have control for this week on her sodium and Magnesium.
Dad is leaving on Tue for India and this is another emotional step. He has been with us for the whole time and now we are on our own. He has been a pillar of strength for us.
Life will be very busy when we get back home. The hospital is 50 min from our house. We are looking at going twice a week.We are not taking her lines out at this point as Dr Howrey thinks it can be taken care of in Fort Worth too. She would need blood work twice a week so it will be easy with lines.
It has been very emotional here in the clinic as two of Janvi close friends can do with some extra prayers. Ryan is back in 5300 with infection and Hunter is still having issues.

Day 100 chemrism results: the clinic forgot to send her sample as result they would do the test again on Monday. It takes a week for the results to come back.
As we are at the end of one chapter and at the point to start another, I am very emotional and scared. I have had a great support group through this website to help me. All of you gave me support when I needed it most in my life. As we head towards another chapter, continue to post your messages for Janvi and us. It means a lot to all of us.
All the nurses and doctors at Duke have been great. They are amazing individuals with phenomenal strength. Thanks to all of you for cheering me up and providing exceptional care.
All the new friends I have made here at Duke, please be in touch as you have touched my life for sure.
Before I get too emotional, I have to have my evening tea with my daughter and dad.
I will update more later.
MS

Monday, October 11, 2004 7:52 PM CDT

Today was the 100 day test milestone for Janvi. Her day at the clinic was long. She got lot of blood work ( around 50cc), pulmonary Function, echocardiogram and chest X ray.She got her last weekely dose of IVIG. From now she would get blood work and see if she needs it, else it would be monthly.

We waited for Dr Martin for almost 3 hrs as it seems like it was a busy Monday. Her labs looked better than yesterday. ( HGB 10.9, plts 213 ,soduim 133 and mg 1.6)
The final decision is still pending.The only thing for now is we are going back with her lines.The surgery for the port can wait a while and her Doctor at Cooks agrees with that too.As she will be getting blood work couple of times a week we thought lines would be very convenient for Janvi.
The decision will be made on the fact that once Janvi is down to twice a week for blood work, we would be comfortable going back home.
At the clinic today, we met lot of kids we havent met for while like Deondra, Kyle, Caterina and Mike. Also learned that Ryan is back in 5100.Hunter also is not well and might go thru another transplant. Please pray for all the kids in and out of 5200.
Well getting back home after a long day didn't stop Janvi to finish 550 pc puzzle (in two days). Meanwhile Bobby went to meet another family who has come to Duke for a transplant. There kid Varun is 7 months old. This new family could do with lots of wishes and prayers.My heart feels the pain for another family to go through something we have been through. This journey is tough and bumpy. The only way we can make it is with will power ,faith in Him and prayers from our family, friends and people like you and me. So fold your hands and pray for these kids and thank him for what you have with you in your hands today.
MS

Day 92, Friday, October 8, 2004 10:23 PM CDT

I wanted a perfect ending... Now, I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next.
When I was walking with Janvi today to the clinic, I met a family support group girl, who works at Duke, She congratulated me for going home soon, but she also said that "you never know till you leave the door". It’s strange that I met her on my way back again. I had to tell her that we are planning to change our decision of going back home on Oct 23rd. We might stay few more weeks.
Today Janvi needed Magnesium thru IV again. Her sodium is also down to 133. Well these are normal transplant related issues that most of the kids go thru after transplant.
In our case getting Janvi lines out and putting a port while Janvi needs all these infusions……too many pokes for Janvi for me to see. Also she would have to go to cooks for getting the port accessed, wait for labs and then get infusion. it would easily take all day over there. The choice is staying here for few more weeks; postpone the surgery for the port by 3 weeks. I don’t mind going back with the lines but I definitely want to go back when her electrolytes are stable instead of falling. I am so comfortable here with the doctors and nurses, the apt etc.
Real difficulties can be overcome; it is only the imaginary ones that are unconquerable. This difficulty can easily be taken care of by some more patience. I want to postpone my going home by few weeks. Nothing is final as yet. Monday is Janvi 100 day test and we will meet Dr Martin and discuss the matter.
Meanwhile, Andria (Janvi’s primary nurse) is coming over tomorrow to play with Janvi. We will get labs again on Sun and check her chemistries.
Mon would be a long long long day……
Please pray for Janvi to be healthy and safe .Hopefully we would be making decision soon.
Manu

Thursday, October 7, 2004 9:16 PM CDT

Its almost time to buckle up for next week 100 day check up and get her lines out. She will be getting a port instead. We got Janvi's appointment for Oct 25th at Cooks Childrens Hospital , Fort Worth. What are the odds that out of three BMT doctors at Cooks, One is Janvi's fellow doctor who used to work at Childrens and has moved to cooks . The other is Dr Richard Howrey who was previously at Duke. He did his residency from Childrens, fellowship at Duke and was a attending at Duke too. He is very familiar with the way Duke functions. Moreover he knows Dr Martin on personal level too. Everyone in the clinic has been praising him a lot.(Janvi was previously treated at Childrens Hospital,Dallas)
I have a long list of people to call and get appointments.
My excitement and my nervousness are woven together. This is the day all 5200 families wait for when they arrive. But the battle is not finish as yet. Janvi still has a long list of Do's and dont's. Please visit her web page to get yourself familiar in case you are planning to visit her , just to educate your self or appreciate your own life.
Life After Going Home

Day 91, Wednesday, October 6, 2004 6:51 PM CDT

Janvi was supposed to have just a lab only day but ended up getting magnesium IV today. They started her on oral mg (400 mg 3times a day) Rest of her labs looked good. We are scheduled for our 100cday checkup on Monday.
I met Hunters mom today and found out that Hunter could do with some special prayers and wishes. He had a rough week last week. Please visit his website(www.caringbridge.com/nc/hunter) and post a special message for this trooper.
Its strange that everyone comes with the same level of hope and fear when they come for the transplant. But everyone leaves with the different answers in their bag. I wish we all had the same happy answers and life would just move on. The transplant process is itself very intense and rough on the kid and the family. Last thiing you need is complications. I am not questioning Him but just wondering why He would do that.They all are so precious and beautiful kids, still wanting to live life and make a this world really colorful.
They all make a difference for sure...its only the people who need to realize that if they have a normal life, then be normal. Enjoy your normal life...by being happy. Dont cry over a cold that you or your child has..its bad they have it but its not life threatning, dont crib if your child is not sleeping..ya you had a restless nights but its not weeks that you haven't slept , or should I say atleast you have a bed not a sofa to sleep on for months.Dont look at what you dont have but for once put yourself in the situation of any transplant family and feel what if???
Sorry I am bitter today but I am hurt and I feel bad that kids have to fight for their lives at this age.Every day I meet a new family who would be entering this world shortly. It hurts.

So when you close your eyes tonight enjoy your bed , enjoy your dinner and thank Him for being where you are today and not where these kids are at this age.
MS

Day 89, Monday, October 4, 2004 9:21 PM CDT

We made some kind of progress today. Janvi is off TPN and her nausea is also gone. Her counts looked good today except potassium. She had to get that thru IV. Dr Martin stopped her Predinose too today and our clinic is once a week. Next week will be busy as Monday is Janvi 100 day study test and Wed her lines come out and they will put a port instead. FInally she would be able to take a bath in the tub.
Today Meridith got to go home. IT feels so good when a child starts a new chapter and a good one. We wish her the best. ( www.caringbridge.com/nc/meridth)
It was so much fun and emotional meeting Janvi. She is back to being all mine now. Hugging and kissing me all the time and after few hours she has to say "I missed you mom"
I need to give lot of credit to dad and grandad for taking such good care of her. It was nice going back home but it was not the same without my princess. With your prayers and good wishes the day won't be far that we all will be home soon.
MS

Sunday, October 3, 2004 8:21 AM CDT

I am all packed and ready to leave Dallas and heading back to my princess. Cant wait to see her.
Janvi has been such a perfect princess while I was gone. She took care of dad and grandad..I mean they took good care of her. HER labs were good on Fri. Dad took her to school every single day. They went for long walks and survived on chicken nuggets.Her nausea is gone too. Yesterday Janvi asked me to come back for sure on Sunday as she needs me.I felt wanted..but only for dressing change and to cook for her...
It has been veryyyyyyyyyyyyyyyyyy busy here back home. I got 72 hrs of work done in 48 hrs. Carpet and air duct cleaning, lawn service, taking care of winter clothes,cleaning the house, her school atuff and my dental is some of the things I got done. But I couldn't have done it without the awesome friends I have in my life. It was really nice meeting all of them. I ate out every single lunch and dinner with my friends. Quick bites and talks was refreshing.
The house and life is not same without Janvi. Everytime I met her friends , I visulaized Janvi somewhere standing in the corner and smiling. She has moved on in life and accepted her new life with beauty, grace and no complains. That is the best thing about Janvi "Let the past be behind as memories and move on!"
Coming back home I realized how far we as a family have come in life. Richer in experiences and have this wealth of caring ..not only for ourselves but for others too. More than ever!
Janvi friends have given a beautiful and thoughtful gift for 5200. They have made a basket filled with gift cards. .from target to Barnes and nobles and more. They have put lot of effort and thought in it. I am glad that Janvi has touched so many peoples lives and people are learning from her too.
Its time to leave for the airport. I am going back and hoping to get her home soon.
Janvi and all of us love reading all the messages everyone posts on the website. All your paryers are working...so please pray for Janvi and her 5200 friends.

MS

Thursday, September 30, 2004 6:42 AM CDT

Day 85
I made it to Dallas yesterday evening.It was extremely difficult leaving Janvi. I got her labs done before I left and they looked good. SHe was very emotional and quiet when I left the apt.
I was very nice meeting Janvi friends and my friends after a long time. THey all came to the airport and later to the house to meet me. BUt in that meeting something big was missing..Janvi. I cannot think beyond her anymore.
When my plane was landing at DFW the past 4 months came flashing in my eyes. From the time I had heard the news that we had to go for the transplant on my bday till the time I left janvi for Dallas, it seemed I had lived enitre 101days away in few seconds of landing.But my head was strong enough not let the heart win. This emotional organ in our body just makes us weak and emotional all the time. As Bobby explained to me, my going home to clean up is a step forward in life.
When we had left Home, we did not have any answers. All we were taking with us was fear, hope and tears. Not that we dont have that with us now, but the nature of fear and the depth of hope is different. There is some kind of faith attached.
Three of us are different now than before. Janvi has grown up so much in these 100 days.
I can write books on Janvi and this journey...BUT
have to go clean and get started. The house is a mess. From dust to webs..its gonna be a lot of work. Meanwhile, Little Janu is having fun with dad and grandad. Thats good to know.
With broom in my hand and smile on my face..I sign off
MS

Day 82,Monday, September 27, 2004 10:09 PM CDT

We made it to the clinic at 8:30 am today....wow!!! I was super impressed with myself. Her IVIG started on time and we were out by 11:30. Dr Martin changed few medications for Janvi. He reduced her BP medication to once a day. So now enalapril is just once a day. They started her on Hydrocortisone as they plan to stop prednisone next week.He also gave her medications to increase her appetite (megestrol)
The good part is Janvi is scheduled for her 100 day study in two weeks. Today we meet 3 other kids ( Wyatt, Meridith and Connor) who were having there 100 day study today.felt really nice to see those kids so close to the finish line.
Janvi had a school day too. Its going good and she enjoys it a lot.
Her nausea was little better today. I am trying not to give her anything to eat during TPN or one hour after TPN.Lets see if the change of medications, and all the stuff I am doing works.
Janvi got a song today, created espcially for her from Song of Love foundation. I will try to upload it on the website soon.
I hope things keep moving and hopefully in the right direction.
Keep praying for Janvi and the other kids as it is working.
MS

Day 81,Sunday, September 26, 2004 7:35 PM CDT

We are day 81 now. This was a weekend off from the clinic. Janvi is still on TPN and has nausea. Seems like nothing is working ..no change of medication or any thing else. She just throw up everything. Well tomorrow is Dr Martin day and this is the top most question on "ask Dr Martin list"
On the good side Puneet visited us from Dallas this weekend. ( He is very close family friend of ours)We all went to Duke Gardens. After a long time Janvi was in a mood to play with us. That was a Kodak moment for my heart.
THe guys(my dad, Bobby and Puneet ) had a guys night out. It was surely relaxing for me to have some time alone and for Bobby too.
Today it has been a regular Sunday. I am finally caught up on my scrapbook.I need to do that as Janvi is waiting for me to open the 550pcs puzzle when I get back from Dallas.
Bobby and dad have gone out for a Bday party of Janvi cousin who lives here in Cary.
Last two days have given me some time to think about Janvi and our life again. Retrospecting the past week and anticipating my trip to Dallas,I feel
everything happens for a reason. Nothing happens by chance or by means of good or bad luck. Illness, injury, love, and sheer stupidity all occur to test the limits of your soul. Without these small tests, if they be events, illnesses or relationships, life would be like a smoothly paved, straight, road to nowhere.

Make every day count. Appreciate every moment and take from it everything that you possibly can, for you may never be able to experience it again.

Talk to people you have never talked to before, and actually listen. Hold your head up because you have every right to. Tell yourself you are a great individual and believe in yourself, for if you don't believe in yourself, no one else will believe in you either especially those who depend on you.

You can make of your life anything you wish. Create your own life and then go out and live it.

I wish I had done it in the past...created a life. Now I have a life to live and I have all the reasons to believe in it too.
MS

Day 80, Saturday, September 25, 2004 1:15 PM CDT

Not much happening at this end. Which is good. Bobby and myself have started to like NC a lot. Its so quite and peaceful. The trees have started to change colors.There is so much to do here.
Janvi is doing better.Her Nausea is still there but seems like Mylanta worked. I am giving her ensure powder in everything she takes so that she gets some calories.She is not that sleepy any more.
I am getting ready for Dallas . I am feeling nervous since I have never ever left Janvi before..not even 12 hrs away from me. So I hope I can do it.I have a very busy schedule in Dallas.Meeting my dentist to meeting Janvi school and the HOUSE!!!!!
Puneet is visiting us today (day trip). Janvi is looking forward to his visit.
We are off from clinic for the weekend.Hope we can relax and pcak before I leave. I have to train Bobby before I take off.
Keep praying and espcially for three other soliders (Jordan, Deondra and Joshua) who are back in 5200 after being dicharged.
God Bless you
MS

Day 77, Wednesday, September 22, 2004 8:41 PM CDT

It has been very quite at this end. Staying home for two days except taking Janvi to school. After school we went to Duke Gardens with Mitchell, her best buddy. She did get labs today they came back normal with hgb 9.2, WBC 5.8 and plt 169. Her chemistries were in normal range too. BUT...the big issue has been her nausea. She is not eating too well. Anything she taste, smells or see makes her nauseated. Seems like Zofran is not working too well. They say it’s very typical to have nausea after transplant. I did talk to the nutritionist today and they have told me to give her cold or dry food. I did go grocery shopping so lets see how that works.
She amazes me everyday. When she has to throw up she waits for me to get the bucket so that I have less clean up to do later. Now when we go for a walk she makes us take the bucket with us. It breaks my heart and makes my eyes misty to see her so strong. I wish she was not that strong but was enjoying herself Kindergarten in TX, taking classes and making me upset with normal stuff. She dreams about her friends in Flower Mound these days. Infact she asked me today if I miss my friends. To make her feel better I told her that I like it here in NC. But she still said she misses her friends and HOME.
Children have never been very good at listening to their elders, but they have never failed to imitate them. I am sure Janvi is picking up stuff from us.
Even though I feel low seeing her like this but I always think it could have been worse. This is a side effect I can deal with for now. In the final analysis it is not what you do for your children but what you have taught them to do for themselves that will make them successful human beings.

With pleasant dreams I close this page for you can fold your hands and pray to Him for Janvi and her friends in and out of 5200.

Please continue posting messages when you visit the website as she enjoys reading them.

Day 75 Monday, September 20, 2004 8:51 PM CDT

We had a very long yet exciting day today. It all started with Janvi waking up to wish Bobby a very Happy Birthday. Later we rushed to the clinic as Monday is a long clinic day. She got her IVIG and Pentamidine today. It took them a while to get started as it was a very busy day.At noon I got a call from Shahrukh Khan show organizer that he would be calling Janvi in next 60 minutes. I called up Bobby to get the recorder so that I can tape the conversation. Well those who dont know who Shahrukh Khan is, he is the number one actor in the Indian Film Industry.Shahrukh
He was on his way to the airport when he called Janvi. You can hear the conversation on Janvi new website.
Later Dr Martin cam with Janvi results. Her WBC is 8.0, hgb 8.9 and Plt 170. ( It came in the noraml range for the first time)Nausea is the big issue we are /dealing at this point. Dr Martin reduced couple of her medications and stopped her VFend, Amlodipine ,prilosec and Dilantin. Started her on zantac to see if it helps her nausea. They will schedule her 100 day study and let us know next week. For now she is still on TPN till she starts eating better.
We have a day off from clinic tomorrow.
It was 4:30 by the time we got home. She was so tired that she slept till 8:30. We had to wake her up to cut the cake and sing a special song that she had learned for Bobby. She also made a 200pc puzzle card for Bobby.
She is fast asleep now and we are waiting for pizza. Bobby has promised us a better treat so we took a rain check.
Well food is here...had a long day today....
Dont forget to check out Janvi new website too.
Thanks to the Batra family in Austin for the beautiful Build a bear set for Janvi. She surely enjoyed making it with grandad.
Please continue to post the messages and keep the good vibes coming.
MS

Day 73 Saturday, September 18, 2004 9:19 PM CDT

Just a rainy day her is Durham. Very quiet and nice. Bobby and dad went to India festival while Janu and I had a nice time at the apt..puzzles, art and went for a walk. It was nice in the afternoon so we could get some laps done. I really enjoyed my time with her, she keeps me entertained. No clinic again tomorrow, so Janvi wants to do final preprations for Bobby bday on Monday.
Just a quick reminder to all those who read this page ..
The secret to happiness is not in doing what one likes to do, but in liking what one has to do.Happiness is not a destination. It is a method of life.I beleive that my yesterday was a dream ( some was god and some bad) and tomorrow is a only a vision. So,I plan to live well today so that my yesterday would be a dream of happiness and my tomorrow a vision of hope.
MS

Friday, September 17, 2004 7:55 PM CDT

Staying home I am losing track of post transplant days. Well it was a rainy day here in Durham We went to the clinic for school and meet the NP. FOr some reasons janvi chemistries for messed up so they had to draw labs again. Her plts were 145, hgb still 8.7, WBC 5.8. Meanwhile her sodium decided to climb up a little to 136. That was good. As a result we have a two day break from the clinic. Due to rain Janvi and I plan to stay home for the most part.We have to do some prepration for Bobby bday. She has her plans. I am back on scrapbooking and trying to catch at that end. Janvi has been amazing this entire time. Not questioning why she is hear or making anythign difficullt for us as parents. Lot of good things have come out of her during this journey. The big thing is charity. ..how much she cares about other kids and wants to donate everything she has to 5200.
I want to thank all my friends back home for your effort to do special stuff for 5200. I know most of you have sent their contributions to Dolly or Meenakshi. Thanks a lot. I am touched by the thought and the effort put together by Janvi friends moms (Dolly, Sonal, Geeta and Meenakshi) for this charity. This would benefit all the families now and in future in 5200. Those who want to still donate can contact Meena 972-8740278
Its amazing and nice to know how much I depend on the website. This is my link to the outside world and for everyone who reads it, to ours. Its nice to hear and read all the messages. It feels very comforting to read the best wishes from all our loved one. Keep those coming as we really need those for the days ahead.
MS

Day 70 Thursday, September 16, 2004 12:54 AM CDT

I know I haven't updated it for two days. By now I think I have spent so much time answering all the calls from our friends worried what happened , I promise I wil try to update it on reugular basis. Well I didn;t have answers to some of the questions so I had to wait. It all started on Tue when Janvi came back from school. I had dropped dad at the mall and was planning to pick him up later in the evening. Janvi started complaining about headache around 2:oo pm. I waited for an hour but the pain was getting worse. She threw up and that was it..I took her to the clinic.Barbara and Dr Parikh looked at her. Her BP was high but the labs were fine. They wanted to observe Janvi for few hours. Janvi was fast asleep for 2 hrs. I called up dad to get a cab and come to the clinic while Bobby was at the apt busy in a meeting. We finally were done around 8:00pm and they ordered a CT scan to make sure she did not have any sinius infection. Thats where all the symptoms were pointing. When she woke up her headache was gone and was feeling much better. The headche never returned and we restarted her BP medications but a lower dose. The CT scan on Wed was normal and no more headaches. Her labs look good with plt 141(normal range is 150) and her WBC 7.1 with hgb of 8.7. The chemistries are normal too. SHe still has nausea and is on TPN but has started eating a little bit.
Today we have a day off from school and clinic, so we are relaxing and taking it easy. All this is nothing in the big picture. These bumps are expected and we can face it as long as we have the energy and the courage.
Meanwhile strong prayers are needed for Hunter, Ian and Claudia.
and the journey continues...
MS

Day 68, Monday, September 13, 2004 8:28 PM CDT

Another Monday clinic day. It went well today as she just got IVIG. Her plts are 114 but her hgb is 8.1 with retic count 87.4. It has gone down from last time. HEr chemistries look good too.Had a school day too. Her teacher says she is doing good. But she was really tired after coming back from clinic. She started complaning of headache. Well due to TPN she wakes up 2-3 times at night for bathroom break. That way she does not get a good night sleep. Above that her hgb being kind of on low side that makes her tired too. The doctors think if she starts eating well again they can think of weaning her off TPN. Lets see how that goes. Her skin is also peeling off all over due to radiation. New skin is coming that makes her itch sometimes. Its funny when I give her bath how the towel gets black due to the peeling skin.Its amazing what all the body goes thru...inside and outside.When they say after the transplant treat the kids as new born its so true..they are new borns in respect to immunity, body changes, taking naps, skin etc.
This is in its own way a new birth for janvi. God has been kind enough to give Janvi third chance and they say third time is a good time. He must have something in store for her ...as he makes her go through this differnet path..I am sure in this different path of life she has taken , she is doing her part of delivering His message about Life ..he will do his in giving her Life.
Please pray for another little warrior Caterina who was supposed to lbe discharged from the unit but instead is having a bumpy road.WWW.caringbridge.com/NY/caterinamarcus ,Caterina

MS

Live not one's life as though one had a thousand years, but live each day as the last. Sunday, September 12, 2004 8:48 PM CDT

It was a quite Sunday with no clinic only labs. Her sodium was 132 and rest of the chemistry is back to normal range. Monday is long clinic day so we are ready for that again.
We tried going for a little picnic today but got bugged by the bugs so we came back home. Just walked in the complex itself. After a long time Bobby and me got some time to think about life as we see it today We thought how far we have come on this road and how the journey has been. It all started with the New Year when our life had changed. But I strongly believe it’s the outlook in life that makes the journey comfortable. I was a kind of person who wanted a perfect ending... Now, I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next.
I must accept life unconditionally. Most people ask for happiness on condition. Happiness can only be felt if you don't set any condition. Most true happiness comes from one's inner life, from the disposition of the mind and soul. Admittedly, a good inner life is difficult to achieve, especially in these trying times. It takes reflection and contemplation and self-discipline. Atleast I have something more to learn and to work on in life.
With a hope for a better weak ahead and prayers for all the kids related or unrelated to 5200.
MS

I would like to pay our tributes to those killed and to those who helped this country three years back on 9/11Saturday, September 11, 2004 7:49 PM CDT

It was another weekend at Chapel Hill. It was after a long time that we got to stay home with no labs and no clinic visits. Got up late and waited for Janvi to tell us how she was feeling. Dad and Bobby went to Botanical garden to take a look and on the way back they stopped at this store called The Southern Place inside University Mall.. They just loved the store which had international things(food, gifts, cholclates,coffee) Bobby took me there as soon he came home. It was for the first time we both had some time alone. It surprised me that I enjoyed it too. Very few things make a difference in my routine anymore but spending some quality time with Bobby was very relaxing. We had coffee and some Italian snack. Meanwhile Janvi was doing very well with grandpa. We might take advantage of there bonding and both of us could sneak out more often. It took lot of courage for me to leave Janvi.
Talking about courage, I have realized its very easy getting impressed with people who have lot of courage. Watching a movie might inspire you to do something courageous, reading a novel and magazine can do that too. Make believe courage is hard to live up to. It takes courage to take care of family and friends . To get involved in their struggles. It takes courage to complete what you have started. It takes courage to live everyday with integrity. When people come up to me and say I have lot of courage and strength to deal with this situation in my life, this is my unconditional love for my daughter . At the same time I give credit to Bobby for it takes courage to work with full focus when you have so much struggle in life, it take courage for a grandpa to come and stay with us and be a part of this struggle. Above all it takes courage for all of you to post a message for us when you know you would rather be here with Janvi..I am talking about our family in India, friends in Dallas and all over the country.. So next time you see yourself in the mirror look up …..for our special thanks to all of you for giving us courage and hope in life.
MS

Friday, September 10, 2004 9:21 PM CDT

Thank You God for sending a lighter package in today. After a long time she smiled today..infact I dont even recall when was it the last time she had smiles.Infact she was her usual self. Her plts were 112, WBC 5.6 and hgb 9.She was back on her arguements and fights with Bobby. Infact she did call up grandpa in India to tell him that papa is fighting with her. I prefer to stay out of their fights. Its so cute and I enjoy watching it too.
We took her to Duke garden today for a walk. She enjoyed the outdoors. Meanwhile we are back on our 3D 500 pc puzzle that is taking a long time.
I am getting ready for my visit to Flower MOund..getting all the appt for things I need to take care while I am home. It will be very difficult for me to meet everyone and go home without thinking about Janvi and the road we have travelled. I sometime close my eyes and imagine Janvi running in the backyard, taking a bath in the tub like a mermaid, playing lion king in her play room. My cooking in the kitchen while she used to run and hide in the house so that I dont get mad at her for playing the Lion King game. Janvi loved pretending to be Simba and the whole play room used to be pride rock.Before we came to NC we got hard wood in the house. Janvi thought it was done so that she wont play the game anymore. How could I have told her at that time why we need to do this...the road she has travelled makes her so mature. Yesterday before going on the radio she said, " I know we are here at Duke because I have cancer called ALL.I want parents to give money to Duke so that more kids can feel better soon and the dragon boo runs away." My simba has become so big that she rules my pride rock already.
PLease continue to keep all these special soliders in your prayers who have learned lessons of life way early.
Manu

Thursday, September 9, 2004 6:48 PM CDT

Each new day brings new stories and memories for us to either forget or cherish. We dont know how the day will turn out to be while we just act like puppets doing our part in this world. Janvi had a regular day today. Still has issues with nausea and leg pain but less than yesterday. Her magnesium for the first time was in normal range (2.3) but her higness needs to work on her sodium.( It almost sound like she is doing good in math but needs to work on her geography.) She went to school today for her class and thats going good.She loves her teachers and they are great too.
It was so nice to hear and see a great cause being done at the hospital today. One of the local radio station (101.5 WRAL) is holding a radiothon at the clinic and raising funds for the hospital( childrens center) Janvi and myself also shared our story on the radio. Janvi was so confident and good ...she does amaze me all the time.
Well finally I took the bold step of getting my tickets for Dallas. I am leaving on the 29th of Sept and getting back 3rh Oct. Gosh this would be the first time for me to leave janvi. I have a long to do list for home. lets see how this goes. Dad and grandad will be 100% responsible for Janvi.
Please pray for Janvi buddy Hunter(www.caringbridge.com/nc/hunter.jones99)for his cells to grow.
Closing for now...
MS

Wednesday, September 8, 2004 9:02 PM CDT

After a long time I got some answers to Janvi health questions.I took her to the clinic today where Lauren answered all my questions regarding her issues. Nausea, diarrhea,leg pain and being tired...all mixed up this morning is clear to me now.Hopefully the picture will become better in a day or two.Meanwhile, her mg is up to 1.8 ,plt 87 and hgb 9.7. So that explains her pains. She still ahs low grade fever but that is due to the radiation /sleeping issue.Not to worry about they say!
Since yesterday her grandpa has been busy massaging her leg and dad is on his toes too.
Its amazing how she rules our world and my day. I run and have fun when she is feeling good ..as they say make hay while the sun shines!
.
These days she is either sleeping or doing puzzles that she hardly spends any time with me. I told her today that I need atleast 2 hrs everyday of quality time with her. I think I have become too dependent on Janvi and at time possesive too. Well she is my teacher as I say and my guru. She has taught the meaning of life and the art of living.Not only to me but to her grandparents, family and friends. How one can stay quiet and say million words,how one can let go the pain by giving away a smile, how one can forget the uncertainity of the future by giving a hug.
All these things that she does has become a part of Janvi personality. I am surprised at myself that at times I look at her for some answers about life. When I see her staying so calm and busy I feel so small if I complain about my life. It seems to me a 5 yr old saying "look at me mom "
I hope I continue to learn from her...for she is the best thing that happenend to me. She has the best of both of us...and you always look at the best to learn.
I am sure this feeling is mutual for all the moms who have brave and strong kids like Janvi..so please keep all the kids in your prayers tonight..in and out of 5200.
MS

Day 62 Tuesday, September 7, 2004 7:32 PM CDT

It was a very long day even though we were not in clinic today. It all started with Janvi waking up with nausea. It made me ask Ann what they were thinking since it was all linked..she having nausea and then she wont eat and as a result she wont gain weight. We agreed it was due to the sodium tablets she was taking. I took Janvi to school and Ann called me to inform me that they have decided to put Janvi back on TPN. Well not the news I wanted to hear but thats what is best for Janvi.Now I dont have to give her sodium. mg IV or tablets. Its all in TPN. The nurse came home to teach us how to use the TPN pump.if this was not enough, Janvi had leg/ankle pain today that kept her little upset today.
By the end of the day, turst me I wanted to open all the doors and window and get some fresh air to freshen me up. I was mentally so tired ...and this came after a long time. Janvi and her leg pain bring lot of bad memories for me. I know this pain is linked to her making cells or due to steroids, but me heart and head just feel low when I see her in pain and that also in her leg.At times I get tired of seeing her in pain, its been more than 3 yrs now. But that is why we are here for 100 days after transplant and then I have faith in the meedical team at Duke.
After having such heavy package today, I hope God has something light for her in store for tomorrow. I hope her leg pain gets better and the nausea goes away.
With dreams in my eyes, I sign off...
Manu

PS: Friends who have asked me about out the pins, Janvi is collecting them to symbolizes her friends feeling regarding her....like a ballerina , angel, heart,rainbow,princess etc.

Monday, September 6, 2004 10:08 PM CDT

Day 61
Monday Clinic daytoday: Dr Martin reduced her BP medication from two to one, reduced her prednisone and dilantin. Her labs looked good too. Dr M is happy with Janvi. I asked him about sodium: which he thinks the body might be recovering on its own, she has lot of nausea : zofran helps but due to the nausea its difficult for Janvi to eat anything. Its getting very tough to cook and feed Janvi as the smell really bothers her too.I hope it will go away soon.
It is really nice to see all the kids from 5200 in clinic. Janvi really like this 5 yr old Ryan who is 100 cowboy. Please continue to pray for Kyle, Jordan, Ava, Jared, Mike, Meridth and Wyatt. All these beautiful kids have come a long way and need all the prayers and blessing to continue to win this battle.
Here are some of the websites you can visit and leave a message
www.caringbridge.com/va/ryansmedley
www.caringbridge.com/nc/jordan
www.caringbridge.com/nc/meridth
www.caringbridge.com/nc/hunter.jones99
www.caringbridge.com/fl/jman
www.caringridge.com/nc/avabrynne
www.caringbridge.com/va/wyatt

God bless all of you who take out time to read about others families and friends. I hope you take out a moment to count your blessing and thank God for what you have today. Trust me there is always someone who is in a situation worse than yours or better than yours. So be grateful for what you have and where you are in life.Never compare!!!
MS

Day 61 ,Sunday, September 5, 2004 11:04 PM CDT

The day went by good. I met Bobby's cousin and his wife (Vinny and Rajni). They live 30 min from here and have been very helpful from the time we arrived in NC. Its amazing that from the time I landed here its the people I have never met who have touched my heart so deeply. Rajni second baby boy was born 2 days before we reached and still she has been very supportive and helpful. Janvi met their son Rohin and I could see the excitement and sparkle in her eyes just because she could be a kid again for few hours.
OK those freaking out at this point regarding Janvi meeting people...we were outdoors with her wearing a mask. Even though Janvi has travelled a long road of maturity this early on in life, she still is a five yr old somewhere. Only if I could give her that pleasure of meeting kids and having fun, going swimming, going on the swings....this summer!
Well there would be lots of summer times in her life...but her summer of 2004 gave her a new life. I hope we can rememeber that forever.
This was another weekend in Chapel Hill. We got a day off from the clinic and was very relaxing after a long time.Her plt were up from 28 to 58.rest of the labs looked ok too.She has been doing good without transfusions. Its seems like eveyones prayers are working. Life is so strange.... there were days I used to go to the hospital twice a day and now its twice a week and I am getting greedy.Let say tired...very tired and scared at times of this new life. This chapter of our life has very short sub chapter ..each one day old only.Cannot plan more than that and trust me I am getting very good at that.There is so much more that needs to be done to make sure Janvi stays in good shape now and later.
How come when I was growing up no one told me to plan my life just one day at a time. They made me show life as this beautiful picture of having good education ,a rewarding job, great husband and a family. But what about these big time unpleasant changes in life.When we are told the good I think we ought to be told the bad.A telephone call from God or some agency would be good saying that your life is about to change for one week..one month orforever..that would be useful. I have learnt that ..as a result of this uncertainity in life, when Janvi gets excited about things I have to add..."for now!!"
Well I am logging off now thanking God for today and hoping for a better tomorrow for my child and yours, for my life and yours.
MS

Saturday, September 4, 2004 10:35 PM CDT

It was a very slow day today. Janvi was sleeping for almost all day today. We went to the clinic around 3pm but besides that Janvi was sleeping.Janvi,dad and myself are working on a 500 pc puzzle that is 3-D. It is teaching me patience and giving me time to bond with Janvi ..working as a team.Its amazing how much I am learning from her. I have true appreciation for teachers who deal with kids.
To look at things from their point of view and understand what they are pointing at, is a skill that I need to develop more everyday.
The fun part was Janvi made me dress up in the exact same combination like hers..green shirt, blue jeans, white shoes and blue bandana....and was introducing me to her nurses as her big sister!!!
Well if we take life one day at a time and solve the issues when and as they come, then life goes on. Janvi has made both of us teach that for sure.
All the kids whom we have met here at Duke have such beautiful personalities that makes them so special.
Please contd to pray for these kids.
MS

Thursday, September 2, 2004 7:44 PM CDT

Well we went back to the clinic for her Thur appt. SHe still has low grade fever, nausea and feeling tired. All these are according to Dr D is due to radiation. After day 60 some kids go thru this for few weeks. That made me feel better. Thats all for today. Need to go back to clinic tomorrow.
Thanks Anushka for sending the beautiful pins and gifts to Janvi. She really enjoyed watching the CD.

With lots of love from North Carolina
Manu

Wednesday, September 1, 2004 9:00 PM CDT

I dont know what to write and where to begin todays journal. It was a normal day with Janvi being tired a little. She told me that she wanted to stay home and miss school as she was tired.
Well I got a call from Kim around 3:45pm to inform me about Folden. This little boy has touched so many hearts all around the world. They had a memorial service at 5200 at 4:00pm. Even though my heart hurts to think that he is not with us now but the comfort is he is Cancer free and is in the arms of GOd who is rocking him and making him feel comfortable. This little soldier did his job on earth, taught the meaning of life and love not only to his family but to so many other families. He can sleep well under the big wings of God with angels around him. May God give his family and sisters the strength to deal with this time.
Later in the evening Janvi developed fever (101) and right now I am in the clinic as she is getting her medications. Once they are done (few more min) we should be heading home. The results are not back as yet to see if its a bacterial infections but we will go to the clinic in the morning and find out the rest.
Please continue to pray for Janvi and all the other kids.
MS

Tuesday, August 31, 2004 5:02 PM CDT

Day 55
Today it was a day where I did nothing but drove..drove ..drove forever because I was LOST. After dropping Janvi to school dad and myself decided to go to the mall to buy some stuff for Ms Janvi. Well we got lost BIG TIME both the times!!! It was good that Janvi had plans with her nurse Ms Andria to meet after school to do some craft and have fun. They went to 5200 and played for a while.
Thanks Andria since Janvi had lot of fun with you.
I have nothing else to write but would like to share something so beautiful sent to me by my dear friend Dolly. Enjoy!!

In My Daughter's Eyes

by: Martina McBride

In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I wanna be
In my daughter's eyes

In my daughter's eyes everyone is equal
Darkness turns to light and the world is at peace
This miracle God gave to me gives me strength when I am weak
I find reason to believe
In my daughter's eyes

And when she wraps her hand around my finger
Oh it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all about
It's hangin' on when your heart has had enough
It's giving more when you feel like giving up
I've seen the light
It's in my daugter's eyes

In my daughter's eyes I can see the future
A reflection of who I am and what will be
Though she'll grow and someday leave
Maybe raise a family
When I'm gone I hope you see how happy she made me
For I'll be there
In my daughter's eyes


I feel so blessed to have a daughter like JANVI!!
MS

Monday, August 30, 2004 7:01 PM CDT

Day 55
It was a Monday clinic day today. Her labs look normal and stable. Dr Martin reduced her Mg, prednisone,BP medication and her clinic days to Mon and Thur. Cant imagine that!!!
Well this was the highlight of the day..Janvi had asked Dr Martin to write something about her. It has been over month and he had it with him every single day but never had time to return it to Janvi. Well she made us buy a Cross Pen as a thank you to Dr Martin and the reason to buy the pen was so that he can write the note. Well she had decided that if he doesn't return the note today, Dr Martin wont be her favorite doc anymore and next in line would be Dr Parikh. Well I warned Dr Martin this morning to watch out for an angry little princess inside. So as soon he came to see Janvi, she had a big mad face and it was so cute that Dr Martin gave her the note saying, " You have been the best patient in the whole world. I will always be at your service." Well that made her day!!
Well now I am trying to get her busy but she has been sleeping a lot. They say that’s normal after few months of radiation.
Today at the clinic it was so nice to see so many kids who were with Janvi in 5200 as outpatient. I pray to God that they do well now and forever.
The road is still long and has its own weather forecast, but I hope we parents have the strength and courage to protect our little one.
God Bless and please contd to pray for these kids and for Folden.
MS

Sunday, August 29, 2004 9:23 PM CDT

Day 54
Another weekend in Chapel Hill went by with my hands folded sitting on my knees thanking Him for this day. Janvi stayed home this weekend as her labs looked good enough for her to skip the clinic. Her Hgb did jump from 8.6 to 9.5 meaning she might be making RBC. Meanwhile same situation as far as Mg goes.
Janvi cried a lot today during her dressing change. After it was all done I felt so weak and strange, something I have never felt for so many months. I looked at her lines and tried to put myself in her situation...with the catheter and the patch..for last 2 months and still she smiles and makes everyone smile. With all the medication she eats and IV meds she takes she caries herself as a bold and beautiful princess.
The only way I can get thru every day if I don't look at her.. the innocent look , the sweetest voice and the beautiful heart she caries with her all the time.I still treat her as someone God sent to teach me lessons about life...to love and smile, to be thankful and greatful, to be caring and respectful, to LIVE LIFE to make it complete. Make each day a complete day.
Thanks Janvi for being my teacher about life and for life.
MS

Saturday, August 28, 2004 9:54 PM CDT

Day 52
Just stayed home as it was a day off from clinic. Her mg is still on low side but rest things are stable. Janvi is still making puzzles every morning followed by a coloring session and then only the day begins.
Well the highlight of the day was we went to Duke Gardens for the first time. It was very beautiful and green. Janvi walked for a little while and then she was really tired.
Please keep Folden in your thoughts as the family is having a difficult night. No mater how hard I try I have nothing that can make me understand why this beautiful child is going thru this tough time.
Hope God gives strength and support to all the families who are seeing there kids go thru this in their lifetime.
MS

Friday, August 27, 2004 8:54 PM CDT

Day 51
Had a regular day at the clinic. Her sodium is up to 134 while mg is down to 1.3. If one thing is controlled we have another thing to worry about. well they increased her mg medication and changed her infusion time to 3 hrs twice a day.That should help with nausea. Rest it was a normal day.
Well hopefully we can take it easy this weekend by only dropping the labs.Lets see!!
Thanks Charles for Janvi gift...I am sure she by now has the whole collection of Polly Pocket dolls. But the thought behind it is touching.
Well Hope all the readers of this website have a good weekend and continue to pray for all the kids ( Janvi, Folden, Ian, Ryan, Jordan, Meridith, Hunter, Kyle)and the ones who are still in 5200.

Please do post your messages as we all really enjoy reading every single message.
God Bless You
MS

Thursday, August 26, 2004 9:44 PM CDT

Day 50
Midway of the 100 days transplant journey. It started with a nice morning as Janvi was excited about her grandpa's bday. She has been making cards and deciding the menu for few days now. Well Her sodium came back up (131 from 123) so that was relieve. But her nausea has been an issue where she has been throwing up evening hours. Dr M says its Mg. to blame so we started on Zofran. It seems like Janvi might start making platlets and RBC soon as one of her test"reticuloyce test" showed the number. So we will watch the number closely. Usually it starts around day 55.
Evening went nice with Pineapple upside down cake Janvi baked with cookies and pizza dippers...all made by chef Janvi. It was a treat indeed.
Life seems like walking on a thin rope and it gets difficult to balance at times. Even though it is straight but some unexpected wind makes it difficult to walk.At the same time when we balance ourselves we are not supposed to look at lives around us but in front and behind us.Even though the family and friend support is important at this time, it is the mom who has felt similar pain can understand the meaning of pain for me. I apprecaite the friends I have to pull be out of it but somehow feeling distant from the normal life becoming normal everyday.
Cant write anymore......Janvi is calling me
Manu

Wednesday, August 25, 2004 10:06 PM CDT

Day 49
Almost half way in respect to our 100 day BMT journey. Janvi counts came back as a surprise as her sodium dropped to 123 this morning. She is again on a restricted fluid diet that is high in sodium. Dr Martin prescribed her on oral sodium pills too. Otherwise Janvi has been busy in school, puzzles and coloring. NO talking No playing..she has her self occupied in puzzles all the time.( It does not puzzle me at all)
Thanks Honey( Roshni and Anisha) Dolly ( Ayesha and Anya) and Melody for the beautiful pins and gifts. We are touched again. Its friends that make this journey have a little comfort of love.
Rest nothing new to write. Getting used to staying indoors and keeping ourselves busy since Janvi is busy by herself.
For those who are not aware what happens from now on, Janvi is basically supposed to stay indoors. All she can do is go out for a walk with a mask. Janvi is to stay away from crowds for a year. As far as food she has to eat cooked food, no raw fruit and vegetables, no outside food either.When she goes back to Dallas the same restrictions apply. No crowds, no parties and no visitations for a while.Even though her counts are coming back but her immunity is very low like that of a new born. Moreover with the winter season it would be really difficult.I will update this info as time comes.
Well, the good side was seeing Kyle in the clinic today with his family(www.caringbridge.com/fl/kyle) and please pray for Jordan for he might be leaving this week(www.caringbridge.com/nc/jordan)
Pray for these kids..they need it !!
MS

Monday, August 23, 2004 10:44 PM CDT

Day 47
Had a regular day at the clinic but it was long. Well Dr Martin and Ann were tied up with some other patient. He has reduced Janvi clinic visits to MWTH giving us two days off. That is good for all of us. A next step in this journey.
Meanwhile all day long I have been thinking of Folden(www.caringbridge.com/nc/folden) and Ian (www.caringbridge.org/ga/ianmcgahee) These two kids and their families are having a difficult time in their lives these days. I have been here in NC for over 2 months and in this short time I have seen 3 kids becoming angels and now Folden fighting for his life. Ian is having some tough times fighting his issues. Isnt it strange that these kids need to fight for toys and games and not for life. Is that fair? They need to cry when mom cant take them to Mcdonalds or friends house and not when mom has to give them medications. Is that fair? They need to put their heads on moms lap to take a nap but the truth is they are lying in their moms lap fighting their cancer.Is that fair.So next time when your kids tells you to read a story at bedtime, go fo it, take them to Mcdonalds and let them fight over things without saying a word......for I bet we can face this than the other side of life.
Pray..Pray ..Pray for little Folden. Please post message on Folden and Ian website to show them they have support from people in this world who make this earth a better place to live.
Good Night
MS

Sunday, August 22, 2004 6:34 PM CDT

Day 46
Another day off from the clinic. It felt relaxing to stay home and spend some time with dad. Its been two months he has been here and I never got any chance to take him out. Once I got the call from the clinic that Janvi could take a day off we went ahead and planned our day. ITs dad's bday this week so Janvi wants to say a special thanks to her grandpa to have come all the way to bless her and help her mom and dad.
Meanwhile I am here sitting on the computer thinking ways to thank all those who have helped us in this situation. Our parents , family and friends have been a great support for both of us. By providing us support they have given us the courage to take care of Janvi. I want to thank all of my friends for being there for me. I really appreciate my father to bear with my mood as it has not been easy for me to see Janvi go thru this journey. I used all my love ,patience and strength to take care of her that at times I had none left for the other aspects of my life. I cannot afford to be weak now since the journey has just begun. SO thanks dad and all my family for your love.
Those who know folden or have just heard his name, please say a special prayer for this little boy tonight.(www.caringbridge.com/nc/folden) He has a big day tomorrow.I am sure God has something special for him.
With all my love
MS

Saturday, August 21, 2004 7:37 PM CDT

Day 45
It is considered to be a imp day after the transplant. It surely was imp for us since Dr Martin asked the nurse to call us in the morning after reading her labs to let us know we could have a day off today. Two months..since June 21,2004 every single day we have gone to the clinic or hospital. I am thankful to God for showing us this day.
It gave us lot of time to clean up the paperwork mess in the apt.reports, consent forms ,bills ..it was a never ending pile..it seemed strange to get into this routine.
It gave me some thinking time too. It is so normal to bounce back into your regular life once things get back to normal and start planning life again. But what I have gathered now is "live for the moment and gather your experiences from the past and bring it forward"
My past is not past 3 yrs since Janvi was dx, but from as far back I can recall. I want to share mine and Bobbys past with Janvi...share our experiences with her and educate her about life..share our life in India and grandparents and their value in our lives....if I keep planning about the future I am afraid my past will go waste. They say get over your past but I would say use it!!
There were so many things from our past that we can teach our kids to use in their present or near future. I beleive it comforts them . Janvi can realte her experience from PICU to Bobby experience in ER 6 yrs back. She can relate to my realtion with my father as a example for hers with Bobby.
Isnt that what family is all about. For those who read this journal today, sit down on a Sunday afternoon with your child and share something precious with your child.Forget about a dinner date or a class to go for...just talk to them for that might come more handy than a party you attend.
MS

Friday, August 20, 2004 9:47 PM CDT

Day 44
Had a long day in the clinic. But the good thing is she didn't need any medications. She attended school while we were waiting.They inceresed her mg as it was quite low. Its so nice to see all the kids in the hospital who went thru BMT are going to school in the hospital. I saw some elementary kids and also some middle and high school kids working really hard while the bodies are working hard to recover after BMT.
Well once we came back home it was just a matter of getting Janvi busy. Her interest in puzzles is really coming handy as she always busy. Thanks Jennifer for mailing one for Janvi.
I wanted to thank everyone at Fidelity Investment working with Bobby for sending the most thoughtful and precious banner for Janvi. The princess on the banner with all the messages touched Janvi heart. She wondered how everyone at work knew she likes princess!!! Thanks a lot.
Rest tomorrow is a big day 45 appt. After that hopefully we dont have to go to the clinic everyday...maybe every other day.
As we step forward everyday I gather all the thoughts and expereince from the past 45 days and use it as a direction for the future. We are not out of the woods as yet. The battle slows down after 100 days but continues for atleast one year as she would have a suppresed immune system. Like any other battle, the effect carry on for sometime.It seems like after talking to few of my friends they were looking forward for us to get back and things would be back to normal. Well it will be normal for us as our defination of being normal has changed for ever.
Please continue to pray for the soliders in God's army who are still in 5200 and for Jared, Ryan, Ryan Smedley, Meridith, Ava and Janvi.
Do continue to post your messages for Janvi and us as we really enjoy reading each one of them personally.
MS

Thursday, August 19, 2004 9:49 PM CDT

Day 43
When I say that you need to live for the moment, today is the perfect example. Last night when I snuggled up with Janvi in her bed I never thought that the morning call would be by Lauran, NP, to let us know we can go HOME. She had a sodium level of 127 , needed platlets and mg. By the time everything was done it was 1pm . She is mostly on oral medications and rest she will get blood products as needed in the clinic.
Somehow, all this does not excite Janvi anymore. We told her that we are going home she thought that would be Dallas. I guess we should have said Apt. She was very quite and did not utter a word to anyone. I would love to blame it on benadryl but later on she told that she misses Dallas and for the first time , that she really misses her friends, school, her house and her playgroup friends. All the good time she used to have with her funny friends.Well I am glad she is opening up and talking about her feeling.I tried hard to cheer her up but time and good sleep would help.
Getting a balance and control over feeling is the best thing I have learned from this situation.I am thankful to God for letting my child come home and sleep in her bed tonight. Thats how far I can live for in my life.
Morning have to go to clinic and start a new day.

Thursday, August 19, 2004 9:25 PM CDT

Day 43
When I say that you need to live for the moment, today is the perfect example. Last night when I snuggled up with Janvi in her bed I never thought that the morning call would be by Lauran, NP, to let us know we can go HOME. She had a sodium level of 127 , needed platlets and mg. By the time everything was done it was 1pm . SHe is now on 99ral medications and 1 IV at home. Rest she will get blood products at needed in the clinic.
Somehow, all this does not excite Janvi anymore. We told her that we are going home she thought that would be Dallas. I guess we should have said Apt. She was very quite and did not utter a word to anyone. I would love to blame it on benadryl but later on she told that she misses Dallas and for the first time , that she really misses her friends, school, her house and her playgroup friends. All the good time she used to have with her funny friends.Well I am glad she is opening up and talking about her feeling.I tried hard to cheer her up but time and good sleep would help.
Getting a balance and control over feeling is the best thing I have learned from this situation.I am thankful to God for letting my child come home and sleep in her bed tonight. Thats how far I can live for in my life.
Morning have to go to clinic and start a new day.

Wednesday, August 18, 2004 9:38 PM CDT

Another day went by waiting for her soduim to go up. She is not at all chirpy any more like the way my little girl used to be......even in 5200. She uses up all her time making puzzles . She is doing 100 piece and takes 1-2 hrs with breaks to finish the puzzle. Thats all she wants to do all day long. So I have so far in 1 week bought 14 puzzles for Janvi. Her aim is to get to 500 pcs. This is all thanks to Jordan.
Well it was a good day on the floor as cowboy Ryan (www.caringbridge.com/va/ryansmedley) and Mike went home today after the transplant. Even though I am happy for them but I know i will miss Kim a lot. Janvi and I played Bingo later. I got to go home for a while to make some food for Janvi.
I just wanted to share soemthing with all those who visit this website and have not seen how the scene is like on 5200. Its amazing how people in this situation think beyond themselves and do so many things for those in pain. Today when I got back from the apt, there was so much food in the kitchen and they told me Folden's family and friends brought this food for everyone. We all cook and we cook to make others happy...but those others are our friends, those we hang out on the weekends or to impress someone..maybe some new friends, boss or relatives. We need to get up and cook and do stuff for those who have not tasted homecooked meals for months, who will not
only appreciate but bless you for what you did for them.
Please pray for Folden and his family to give them the strength to deal with it.(www.caringbridge.com/nc/folden)
God Bless all of you

MS

Tuesday, August 17, 2004 7:19 PM CDT

Day 41
Dont have much to write about the day. Her counts are still the same with sodium 124.Seems like her kidneys are flushing out most of the sodium. Continue to pray for her and all the other kids on 5200.
With hope
MS

Monday, August 16, 2004 9:09 PM CDT

Day 40
Another day of sodium imbalance. Woke up kind of upset as her sodium was 125. Bobby and I did some research on the web in order to find some answers on our own. We both feel very satisfied when we talk to Dr Martin. I think very highly of him.His approach towards his patients and work is worth million words. HE told us that he would talk to a kidney specialist. Meantime Janvi had a busy morning with breathing treatment, school, Dr Martin visit to her and all the Monday medications (IVIG, Platlets) SHe got a small reaction to her platlets today so we have decided to get her medicated before any blood infusions. SHe got Benedrly and slept for a while. Meanwhile her sodium is 124 and they have stopped all IV fluids to see if that brings her sodium up. It seem she retains the fluid and takes out her sodium in her urine.
On the floor it was a busy day as it was Mike Bday ( he turns 6) Kyle's mom Mary cooked food for everyone and Foldens family friends had brought dinner for the family.It was really nice to see everyone busy. The fact is when we are busy we are distracted from our pain and suffering. Everyone is suffering in their own way but I feel lucky that I have so many people on the floor to share my pain with..not in words or action but just crossing them in the hall we feel it and move on. It seems as if this is a small city with lots of families living in..you can move in but cannot leave the city as you are connected forever. THe people outside this city might feel we are okay since we are home but its the people of this city who know what the weather is like, what the forcast is , how the infrastructure of our city is....
I hope this makes sense. I cannot go back to the world I came from but I can enjoy in this world and make it a better and comfortable one for this precious little kids.
Love
Manu

Sunday, August 15, 2004 5:11 PM CDT

Finally we are out of PICU. Last night we moved to 5100 into the hemoc/oncology ward. Her sodium and BP are stable.It took some time for us to settle in but once Janvi was asleep I took my dinner plate, logged on to the net and enjoyed my quiet time. I did her dressing change in the afternoon and came home. Bobby is taking good care of Janvi while I enjoyed a comedy movie with dad.
Sometimes its nice to just sit back and relax and put things on hold. As long as its not a health issue its not an issue. At times I get stressed out on tiny things that I still need to work on but at night I ask for forgivness from Him and thank Him for a wonderful life and family he gave me. We may not be in the best situation right now but things do get better. Storms do get over, the night does get over, the rain does stops and life goes on.Till we have had a bad day we will never appreciate the good ones.
Its only when we take away something precious from someone, the true value is appreciated.
I met Folden's mom today and its amazing that how we ( moms in 5200) have so much in common in life.( www.caringbridge.com/nc/folden) Our kids are specially sent by God who have made us ,the parents ,their messengers to spread the message of love and life to our friends and family.
Dont always force your child to learn but for a change learn from them.

Manu

Saturday, August 14, 2004 3:43 PM CDT

As Janvi is still in PICU I have completely forgotten her days and the counts. All I now care about is her sodium and her blood pressure. Yesterday, all day her sodium andBP were stable and we heard the wisper that they might be moving us to 5100. But late at night her sodium fell from 127 to 122. It kept falling and her BP kept on going up. I finall slept at 2am waiting for her results. At 4am the nurse came and told me her sodium was 119 and her BP when I looked was 154/114. I called up Bobby and told him to come to the hospital as I was not comfortable in this situation. After the rounds, Dr Martin came with the other doctors and told us that they are changing some medications (like putting her on Hydrocortisone) and keeping a close eye on her. So for now she is still in PICU being watched closely by the doctors till her levels are back to normal. They are concerend but not worried at this point.This can be controlled.
Dad and Bobby went back home after the rounds to get some rest and now I am home ...planning to get some sleep. Its raining over her and for some reason I am missing my Flower Mound house.Something so small as going to a friends house for a cup of tea, having Janvi friends over to play, waiting for Jassi and Astitva...that normal life that I had ..I am missing today. I am missing my old friends, I am missing my kitchen and I am missing everything I used to have. I feel its not easy being here in the hospital..its not easy seeing these kids suffer...to see the moms holding hands of there moms, its not easy waiting for the doctors to let you know how my childs life will be for the day, igts not easy telling your child that why you would have schooling sitting in the bed while kids your age are outside having fun. It breaks my heart to see these kids suffer and still live upto their parents expectations. Its not easy to balance your emotions when one family walks out of the unit after discharge to start a new life and another family is walking into the same room on the same day.
Its just not easy..so for those who are reading this page today or in the future, make your life easy by taking it easy in life if we cant do it atleast you can!!!
Manu

Thursday, August 12, 2004 4:10 PM CDT

All her test are normal so far. She is still in PICU waiting for a room on 5100. Her BP is still high so they increased her BP dose and started another BP medication also while her Sodium is under control.I came home around noon to catch some sleep while Janvi is in good hands with Bobby.She is back to her normal self.
Her smile made everyone take a sigh of relief today.
I wanted to thanks everyone who prayed very hard for Janvi and your messages truely provide lot of support. Please also pray for Janvi friend Jordan who is also in 5200. He is a strong soldier in this army fighting like a hero.
God Bless all of you.
Manu

Wednesday, August 11, 2004 11:27 PM CDT

Janvi's MRI reports, CT scan reports and spinal tap reports came back normal. She is still in ICU but doctors removed the ventilator and all the tubes that come with it. She is doing fine, using both hands, legs and her eyes. We asked her lot of questions and she nodded yes/no to them and gave us her pretty smile. She is still sleepy from all the sedation she got but she does listen to everything we say. We get an occasional frown and smile at times. We are hoping that tomorrow morning when she wakes up, she will be her old self, giggly and happy.

Wednesday, August 11, 2004 4:23 PM CDT

DAY 36
My hands tremble when I write to days report. A part of me wants to erase it forever while the other wants to learn another lesson of life that was not taught to me so far and that would be see the face of death. A moment that will change me forever. Last night Janvi sodium was low and we came back from the clinic around 2am. This morning she threw up couple of times complaining of a headache. As we reached the clinic, her BP was 168/114 which is very high and her sodium was 124. They gave her BP medication and we were getting ready to take her for infusion. I took her to the bathroom where suddenly she had a seizure. She fell on the floor and I picked her up and rushed her to the nurse. In a matter of minutes my life took a turn where in front of me Janvi was lifeless, no eye movement, no response but had good heart rate and good stats and on the other hand Bobby watching all this made his BP fall to 40/50. Gail the NP took care of him while Ann another NP told me to accompany the team for a CT scan right away... I made them page Dr Martin even though Dr Schboltz and DR Pariq were present. In the meantime I called up dad in the apt to get a cab and get to the clinic ASAP.
When we reached back after the scan they gave Janvi anti_
Seizure medications and ativan, as a result her breathing became slow. In a matter of seconds the entire team of PICU was in the room on Janvi. A team of doctors and nurses, more than 30 in numbers, and I were unable to see her...where did my daughter go...was I losing her....for now or forever. All I recall was begging the nurses for me to see her...hold her in my arms...pick her up and run and go fight with God. ..Why her everytime...just because she makes it easy for everyone, or because she is a fighter?? Why my baby!!! I have accepted lot of thing that came in my destiny in regards to Janvi without questioning Him anything. But He needs to give up testing this baby...go pick someone your own size!
Well she is in PICU right now and Dr Martin did her spinal tab and that came back normal. I came home with the intention of getting some rest but her face, the moments from the morning episode kept haunting me in the apt. I will be heading to ICU at 7 and stay in the waiting room for the night while dad and Bobby will come when they wake up at night to give me company.
I am sure I'll have more to write when her results get back, for now Pray for Janvi to make it thru this as my little trooper cannot disappoint us at this point of the war. My little trooper is a true hero who keeps coming out of these big hurdles to make me love her and worship her every single second. Oh baby only if I could hold u in my arms right now...
Please don't call us after reading this as our nights and days might be messed up for a while. If you visit the website please post your wishes in the guestbook.
I am looking for courage inside myself to fight this but I am having some difficulty. I am running low on that today. I strongly believe that strength is something you find inside your self and support amongst your family and friends. Let me find my strength for now and the messages give me all the support.My little baby is gettig her MRI at this moment. Dad and Bobby are holding up good. Tomorrow,I will look back and tell my princess...we did it agian Janu..I hope I can...and I wish I can..
I better stop as I don’t have the courage to write more
Manu

Tuesday, August 10, 2004 11:10 PM CDT

Day 35
We had a very long day at the clinic today. They call it a nightmare Tuesdays!! Its alwasy busy on Tue at the clinic. It took 2 hrs for the NP to see janvi. Her mg and sodium was low. She got Mg and lasix to see if her BP would come down. Meanwhile we had to go again in the afternoon to recheck her sodium level. After dropping her blood, we were called in the clinic again to give her some sodium. I am still waiting for her results.
As I always post, I am learning to take life one day at a time. Yes , yesterday was a good day but it was yesterday. Today it was very busy and hectic but it will end soon. I have no clue about tomorrow so why worry tonight. We will cross that bridge when I wake up..as long as I have the palm of my hand under her cheek to make her go off to sleep, I have my husband next to me to support me and my friend and family to wish me good luck..I will not worry about tomorrow.
Pray for janvi and all the kids on 5200....for pray for a better tomorrow.

Monday, August 9, 2004 8:55 PM CDT

Day 33
If I had a special pen I would have used it today. If I had a special words to express my emotions for the day I would have used my tears of joy to use as ink and my joy as the color to write her report for the day. Her Chimerism results are back and she has >98% donar cells. Thats what we all wanted to hear.
For those who are not aware of the meaning of this test, even though Janvi had engrafted, the true result was to see whose cells does she has inside. Her own cells or that of the donar. We all know her cells had the cancer so we wanted the donar cells in her body. Her results did not show any signs of her orginal MOnosomy 7.
We heard this news around noon. All of us are very thrilled and Janvi says she ahs won the battle and now its just clean up to be done.Clean up after the war is always a bit to long.
Her grandparents in India have been very emotional since the time they heard the news and specially her cousin sister Sanu. Her words were,: Janu , I pray to God everyday after I come back from school to take care of u so that you can come to India soon and play with us.
Dad has made a special dinner while we bought some gifts for Janu.
Its after 6 months that I have enjoyed my day without any deep fear. I have shown excitment before time in the past.
Living for today is the aim ,looking forward for a better tomorrow is the desire and hoping for a great future is the dream...and dreams do come true.
Seems like all the prayers are being answered. Please continue to pray for Janvi and all the kids on 5200 who are fighting a similar battle.
Manu

Saturday, August 7, 2004 7:15 PM CDT

Day 31
I got a break today as Bobby and Dad took Janvi to the clinic . She got her platlets and was done. The afternoon went by just lazing around ,which we as a family ,are not used to anymore. We all took a nap trying to catch up on some sleep that we have been deprived of for last 2 months. Bobby and dad now have a break and are dicovering the area around Durham while Janvi and myself are playing some indoor games. Since the next 10 months would be indoors for her, I have decided to stay indoors with her too. If she cant go I cant go!!! If she can do it, I can do it!! She made a beautiful picture about smiles that forces your heart to smile.If yo have any ideas regaring indoor fun , feel free to post it in your message
Need to go as Janvi is done with her medications and I need to unhook her now.
She enjoyed getting another set of pins from her Best Friend Rashi and her family. It was a beautiful picture of both friends. God Bless this friendship.
Have a great weekend
Manu

Friday, August 6, 2004 8:29 PM CDT

Day 30
Very short day at the clinic. Her WBC is 14.4. Nothing else to write. Janvi misses her friends in 5200. But slowly most of them are being discharged and she will be able to meet them at the clinic.
Over the past few weeks I have been getting lot of emails regarding Janvi's website. Number of people have been touched by Janvi battle with cancer. But the good thing is that along with us, they have learned precious lessons of life.
The purpose of most of the parents who write at caringbridge website is to keep our friends updated regarding our kids as we are unable to talk to them but above that for those who can learn a whole new meaning of life....for there is a much deeper meaning to it than what we can see.
Manu

Thursday, August 5, 2004 3:02 PM CDT

Day 30
It started of as a normal day with all medications going on fine. Janvi also slept thru the night, not getting up due to her sweating issue. We reached the clinic around 9:30 but by the time we reached we were about 5-6 families signing up at the same time. The computers at the clinic were kind of messed up and another patient had bumped his head and required immediate attention. There was a long wait. Finally around 11 we heard from the doctors that Janvi was doing good and all she needed today was platelets, then we could go home. It was almost 1:30 and no sign of the platelets. I asked the nurse and soon we found out that they had sent in the order without writing what they need. Finally we left the hospital around 3pm.
We met Ava, Janvi loves this 16-month-old baby as they were together on 5200, her mom told me that they have the permission to go back home. It was wonderful news. Janvi says she would miss Ava. It’s strange that we meet these wonderful families with great parents and grandparents. We learn new things about life from each; move on wondering if we will ever meet again. But surely leaving footprints on our heart. As we all move back home the experience of meeting these families and the wonderful kids will only remind me how they made Janvi and our journey thru transplant so easy. There experiences in this journey made us feel that we are not alone and showed some light we could hope for at the end of the tunnel.
Well Janvi long day was made when she received a big packet from Fidelity that was filled with princess coloring books and fun filled goodies. They also sent us a gift card to pamper Janvi a little more. It was so thoughtful of everyone who contributed to this gift. She also got her pins from her friends on Flower Mound Ameya and Anushree. She wore it her sweater right away.
Your gifts, thoughts and prayers mean a lot to us. May God bless all of you.
Please continue posting as Janvi loves reading all the messages.
Manu

Wednesday, August 4, 2004 8:30 PM CDT

Day 28
We learnt a lesson today. Drop her labs early morning instead of taking it to the clinic with us. We reached clinic around 9 but her lab results and chemistries were not back for a while. By the time she was done getting platelets and magnesium, it was 3. To add to all this, Janvi was complaining of her right finger hurting. I could see it being stuck. The OT said to get an X-ray done and that’s what Dr Martin told us too. The X-Ray was fine. It showed little bit of swelling of her ligaments. Drs say that steroids can do that sometimes.
Well that’s all for the day. I am getting control of things at the apt too. It’s amazing how a person with change of circumstances adapts so quickly and moves on in life. Today on our evening walk Janvi said, "Mom, u know when we have a bad day or are not feeling well, just get over it as only then good times will come back."
Thanks Mani and Maya for the beautiful gift for Janvi. Vandna (Honey) once again thanks for the pretty PJ for Janvi. The fact that you got it specially stitched means lots to us.
I consider myself very blessed for having such precious friends.
God Bless You
Manu

Tuesday, August 3, 2004 3:09 PM CDT

Day 27
I haven't had a day like this before. The morning went smooth. Bobby and myself did the IV medication set up at 6am and gave Janvi all her medications just fine.Bobby went and dropped off her blood for her CBC while we got ready for the clinic. The clinic visit was easy with no meds required. We were home at 11am. I had no idea what to do with so much time?
I did go back to normal household stuff but deep inside I am always thinking of ways to make use of myself for the kids on 5200 who are going thru transplant and beyond. I hope whem time is on my side and Janvi is feeling better , I want to put all Janvis ideas of helping kids going thru BMT to use. She wants on regular basis to cook food or order food for the familes going thru BMT, send some arts and crafts for the kids, make anyday of the BMT kids into a special day. She has the will power and the strength to make me do it. Those reading this journal if have any ideas what we as a group can commnit to do for these special kids and their parents please pass along.. I created a yahoo group and those who are interested can go to :
Group name: Supportingbmtfamilies
Group home page: http://groups.yahoo.com/group/Supportingbmtfamilies
Group email address: Supportingbmtfamilies@yahoogroups.com

Happiness lies in making others happy,in forsaking self interest in bringing joy to others.


Manu

Monday, August 2, 2004 8:33 PM CDT

Day 26
ANC 5400 and WBC 6.6
First day at outpatient. The morning was kind of hectic, as we had to give few medications for the first time to Janvi. But things settled down as we reached the clinic. She saw Ann, the Nurse Practioner, got all of her medications, and met Dr Martin. He had all good things to say. They reduced small dosage of her Solu mederol today. But they also did the " Chimerism" test today. Even though Janvi has engrafted, but the big test is to see whose cells are inside her: hers or Donors. (We want 98%+ donor cells) The results will be back Fri. I have been happy that she has engrafted, but the true joy and excitement will come when the results are back. So please keep praying for Janvi for its time for God to answer everyone’s prayers.
In the afternoon the nurse from Duke Home infusion came to teach us how to give her IV medications. We give her three medications thru her IV morning and evening.
We did fine.
I guess tomorrow we will have better hold of things.
God has been watching me as a mother for last three years, if there is a reason for Janvi to go thru this, I am sure there must be a reason I am her mother too. The only reason I can think of is that I can enjoy every little thing she does and create a bond so strong that makes my daughter say " God sent you mom for you could take care of me. I hope every time I am born, you become my mother" No word or compliment can ever be stronger than this one.
Manu

Monday, August 2, 2004 4:30 PM CDT

Day 25
ANC 3520 WBC 4.0
The day we have been waiting for everyday is the day we end chapter 5 (Post Transplant) and start chapter 6 (Outpatient). Janvi woke up with an intense ankle pain in the morning. Dr Driscoll came to look at the ankle which seemed like bone pain. She got double dose of medication. Bobby told me to rush to the hospital and things were under control. I had to do the final packing, as the discharge time was 7pm. In no time we were done packing and Janvi was getting so anxious that every 30 minutes she would ask me “is it time to be unhooked”
I had few more meeting with the nurses to make sure I understood the medications and took care of everything I need to do at home. Bobby and dad got some snacks for 5200 families and staff as a thank you for all the support and help.
Finally it was 6:50 and IV beeped indicating end of medication. Jenn B came to unhook Janvi. Both of them were super excited. Janvi wanted to wear a white dress with pink flowers, pink hat and a crown, white sandals and a pink poodle shaped purse. She was so excited to walk down the hall to say her final bye to 5200 that have practically been the family to us. The exciting part for Janvi was that 7pm is change of shift, so she got the farewell from both the shifts. As she walked down the hall everybody was blowing bubbles and throwing confetti on Janvi.
\ I watched her till she reached the door, my heart gave her all the wishes a mothers heart can give, a friends heart can give and a students heart can give to her teacher. That’s what she has been for me the entire 31 days in the hospital. Teaching me to live life, enjoy every cup of tea I have and smile even when my day is bad for those who we love deeply.
31 days in 5200 have been a wonderful experience for Janvi and me. The doctors are so organized and wonderful. All the nurses are so cheerful and full of energy. I feel as if all the kids over in the unit that Janvi and I personally knew like Jordan, Kyle, Ryan, Hunter and Meridth, that we know them for a longtime. Something common we have is the experience of living life and fighting to live too. I personally want to thank Kim and Hope for being there for me as a family.
Well we came home, ordered food form Chilies (just for us) and Janvi had homemade dinner. She wanted candle light dinner. We listened to the princess as she has returned to her palace and we all enjoyed our first family dinner after a long time. More than the dinner I enjoyed looking at her as she made it with a smile thru her toughest battle of her life getting rid of dragon boo boo for good.
God Bless you

Sunday, August 1, 2004 0:18 AM CDT

Day 24 Time 1:34am
Another extremely busy day. WBC 3.6 and ANC 3016
Well we have been so busy with Janvi homecoming that time just flies back. I slept in the apt trying to make it comfortable for Janu. In the morning dad and myself went shopping for her medical supplies that Janu called to let me know that she is coming home SUNDAY and she would get a 4 hr pass to come to the apt today. WOW!! I had a not exactly panic attack but if there is something as excitement attack. Anything I saw in the house, in the car needed to be sanitized all over again. (That is what the nurses had warned me not to become) I was seeing germs thru my naked eye even though I had cleaned every single thing not even 12 hrs back.
Finally she came home at 3pm. had lunch, bath and was so happy to be home. She was smiling all thru her journey home and at home she was feeling each and everything.
Soon it was time to go back to the appt, as she had to be hooked up again. AND!!!!!! She did not like it. She now after 31 days found the bed to be uncomfortable, wanted to go back to Dallas. Well I can understand that for sure.
She wanted cake for the nurses and gave them a thank you card.
Today, I have to write that even though most of the post or the messages I get saying how great AI have done, not even for a second I think I could have managed without Janvi cooperation, Bobby support and dads help. I think we work great as a team. The road gets bumpier for us from here due to extra care of Janvi but I have bulked up and making sure everyone else at home is bulked up with sanitized hands.
The families, nurses and doctors at 5200 have been awesome..gosh it will be difficult to say bye. It felt like a big family feeling each other’s pain in the heart, in the eyes. When a mom used to get out of the room my eyes used to just look at her eyes to see what kind of day she is having. Unlike under normal circumstance you would look at what she is wearing. I have a learned a lot from 5200. I hope I can use it for some good stuff in life.

Friday, July 30, 2004 11:45 PM CDT

Day 23
ANC 2860 and WBC 3.2
It was a very fast paced day for me. Zoom here and zoom there. SInce morning there was some confusion regaring discharge date for us. Its still up in the air. That I can handle since there is no idea sweating over things you cant change. You can fight to some extend but we need to trust people who are the expertise in there field.
I came home at 3pm and have been cleaning the place since then for Janvi's homecoming.Bobby is at the hospital tonight with Janvi.
Since last two days Janvi has been going out on a "pass"for 2 hrs. That means she could go downstairs in the childrens side and see the Fish Tank. She was so happy to get out of the unit after 30 days that I could see the smile thru her mask.
Isn't it amazing that we dont even think about going up and down in the elevator as FUN or walking round and round holding the finger of your dad as the best time ever while it can be so stressful for people in normal circumstances. Next time your child holds your finger, look deep in his eyes and see the shine or next time you ride elevator appreciate how kind life has been to you.
Need to sign off as its 1:15am
Manu

Thursday, July 29, 2004 7:39 PM CDT

Day 22
Had a very busy day today for myself. After a long time I feel tired. Janvi WBC is 2.9 with ANC of 2560.We had another meeting with the discharge nurse this afternoon. After the meeting somehow I was very much on the edge, worried or anxious I dont know. I guess as I try to settle in one chapter I dont even realise I am up for the next one. Now there is lot of pressure on me for taking care of Janvi.Small things like not closing the bathroom faucet with hands but napkins, cleaning her dishes with bounty rolls, washing hands every few minutes...I hope I remember all these things on top of all the blood draws, medications and clinic visit.
We are looking to come home on Monday and I have tons to do in the apt before that.I just got home and all I need to do is take a deep breath and think of the beautiful smile Janvi has ,feel her hugs and cherish having a daughter like her. That should make me going.
Manu

Wednesday, July 28, 2004 9:22 PM CDT

day 21
Another day is gone with my hands folded and eyes closed thanking Him for giving us a good day.
Her WBC are 2.5 with ANC 2040.
Had a very busy day as Bobby and myself had meeting with the discharge nurse Lee. Went over the plan and instructions regarding the discharge.Janvi was on her own with the nurses for the most part. Her Best Buddy Michelle came over for few hours too. I got to go home with Bobby for the first time ,leaving Janvi with dad, for an hour so that I could clean the place and set up the furniture that was delivered this morning.
They are talking about sending us home early next week.
Going home would be the start of the next chapter of Janvi journey thru transplant .
Chapter1:Dx
Chapter 2: Coming to NC
Chapter 3: Radiation
Chapter 4: Transplant
Chapter5: Post Transplant
Chapter 6: Discharge
Chapter 7: Going back to Dallas
Chapter 8: One yr at home
Chapter 9: 1 yr check up
Chapter 10: New Life

Each chapter has been a challenge in its own way making us afraid and giving us strength as time comes.
This chapter wont be easy but as long as I have the mental balance, inner will power, family support and love, I can fight this war for Janvi anyday!!
Manu

Tuesday, July 27, 2004 7:38 PM CDT

Day 19
A very short and slow day. Janvi had a uncomfortable night as a result we both woke up at 10.She was tired for the most part today. They say this is common when the new cells are coming in after the transplant. Her ANC is 1640 with WBC of 2.3 this morning. She was resting for the most part today.
THis afternoon one of the kids Jared got to go home after approx 89 days. It took him a while but he made it!!!
I am home cooking for her and running really late.
Grow Healthy Princess Cells! GROW!!!!
Manu

Monday, July 26, 2004 8:30 PM CDT

Day 19
She did it!! Her ANC is 880 and WBC 1.3. JAnvi has been over 500for 3 days in a row so the doctors call it being officially engrafted. But they are not talking about discharge as yet. I guess we as parents need to learn lot of things before we can leave. Thats okay..we are not in a rush. Its not as if we are going back to Dallas.
Otherwise she is doing good. Got some blood and platlets today. Has engragfting rash on her body and face today.
Thanks everyone at Make a Wish of Dallas for all the stuff you have put together for Janvi especially the pins for the Friendship boost. That was very thoughtful of all you.
She loved the princess slippers and had to go out for a walk in them.
Janvi is having a Drawing Contest on the floor and she will be the judge. Her topic is: Inside 5200

Its wait and learn phase. WE have to watch out for GVHD and her other functions for a week or so
I am waiting....
Manu

Sunday, July 25, 2004 6:29 PM CDT

Day 17
Okay. ANC 740 with WBC 1.0.
She had a nail salon party with the nurses today. Nurses had to sign up to get their nails done.Later she did lot of art and craft with Andria and me. Since she slept at 3:00am and woke up at 9, I didn't let her sleep all day today so that she could sleep early.Uncel Vinny paid a visit on special demand from Janvi and got her a LION KING game. I am cooking dal and rice for her in the hospital(believe it or not)
The doctors have taken her off pain medication and two antibiotics.
If she makes it >500 in the morning, she is officially engrafted.Then the doctors will discuss the plan with us. Both of us are now trying to learn how to give her medications , draw blood and change dressing as we have to do it ourselves in the apt.
Janvi is calling her new cells as :
"Healthy Strong Princess Cells!!"
She wrote a card to a kid on the floor last night and said
"Hope you feel better soon as hopes are like dreams and dreams do come true!"
I am waiting for it!!
Manu

Saturday, July 24, 2004 7:20 PM CDT

Day 17
Okay..she did it for the first time. Her WBC is .9 with ANC 516. Am I excited? No, since she has to do it for 3 days in her row to be officially engrafted.But I am happy for the day. Thats how far we need to go. She slept all day. Thats pretty much it. She woke at 8:30pm and has already warned me that she would be up all night.
So good morning to both of us and good night to all of you.
Manu

Friday, July 23, 2004 8:31 PM CDT

Day 16
Fairly okay day with her WBC is .6and her ANC is 318. Grow cells! Grow! She had John from the stress management come and sing her some Indian hymns like Hanuman Chalisa and Ohm Namo Shivaya. I was very impressed but it was more for Janvi.
Otherwise she slept in the afternoon and later got another present from Charles. A Polly pocket and played with it for a pretty long time. Thanks Charles.
Everyday almost all the families exchange views regarding the well being of kids. Some parents have smile on their faces while others have fear and few of them may have tears. It all justified but sometimes it feels all of us being here is not justified at all.
Sometimes I think about why I am here and the only logical reasoning I can get would be to Learn. Sitting in the BMT unit for 20 hrs at a stretch I am learning the lessons of life that I never learnt before. Believe it or not my teacher my guru is Janvi.
How someone confiding in one room can win so many hearts is one of the lessons I learnt from my pumpkin.
Manu

Thursday, July 22, 2004 6:33 PM CDT

Day 15
Very slow day as Janvi was just too laid back today. No smiling, not interested kind. Well as long as she did her walking and mouth care I let her sleep. Ya, she did talk to one of her friends on the phone but it made her really sad. She told me she feels really sad talking to her friends because it reminds her of Dallas, her friends and other stuff. So I have decided that I will not let her talk till she really wants to talk. I spoke to other parents and seems like all kids cry when they talk to their friends for the first time. Well, When she has three of us as her best friends I am sure we can act like 5 yr old and get her to smile. Anything for the beautiful smile from my Janvi!!!
Thanks Geeta, Saanika , Neha and Code Pink group for sending gifts for Janvi.
Thanks for all your prayers. As my brother is in Africa and is with Simba, Janvi is getting excited redaing that stuff these days.
Friends, just smile because you can!
Manu

Wednesday, July 21, 2004 10:26 PM CDT

Day 14
Her WBC came down to 0.4 but her ANC was 196.She had a relaxed morning with some scrapbooking,study time,Bingo and nap time. She slept for few hours and woke up around 6pm. Andria, Janvi and me were doing some craft when Janvi started to itch all over and in no time she was itching,crying saying that her tongue is on fire. Within 2 min her lips were swollen and I was wondering what is going on here!! Reaction to TPN. So much for planning. Janvi was sleeping from 6-9 while I ran to do groceries. She ate 2 spoons of rice after 3 weeks. For someone going thru transplant its a milestone.
Its 12am and she is wide awake watching me type. I am tired and will force her to sleep.
Good Night
Manu

Tuesday, July 20, 2004 5:47 PM CDT

Day 13
Wow!! I woke up at 4:00 again and found out that Janvi WBC were 0.8. Thats hopeful!!!. I am still not too excited as I have learned my lessons from the past.But as my friend Dolly said "atleast we friends can get excited". I would say continue what you are doing for Janvi, for it seems like it's working.
She woke up around noon and had a good time till 4:00. She did her walking, shower , mouth care and cellmate activity. After that she was tooo tired and has been sleeping.
I want to say thanks to all those friends who have been emailng Janvi and posting on this website. Dolly, Sonal, Geeta , Honey and Anvita, I want to thank you for your support during this time. I am blessed to have friends like you. Thanks Charles for your wonderful gifts to Janvi.
We three really appreciate the strength and support provides by all our friends during this time.
All of you reading this page , please enjoy little things in life that you take for granted. Small things like taking a shower or walking. When I see these kids in the unit who want to run but cant due to the IV poles , I wish I had never stopped Janvi from running. So go run because you can. When I see Janvi desire to take a long shower but her lines stop her, I regret taking her out from her bath tub in Dallas.
As one of the kids on 5200 once said:
MAKE SURE YOU USE LIFE AS A MEANS TO LIVE, NOT JUST A MEANS OF POSTPONING DEATH!!
Go live your life to the fullest because you can!!
Manu

Monday, July 19, 2004 7:24 PM CDT

Day 12
The nurse woke me up at 4:30am this morning to tell me her WBC was 0.5. I couldn’t believe that it could jump so much but Janvi was beet red color yesterday so we did expect some news for sure. But I still don’t want to get excited even though I know everyone’s prayers might get answered. So everyone! Continue to pray for the princess. The doctors say if her rash increases they might have to increase the does of steroids (in that case helmets for the parents as donations are welcome.) But they are watching her functions very closely. They changed her anti fungal medication so the new one won't be that hard on her kidneys.
We started a chart in her room where if she does her 4 time s a day mouth care, her walking and smiles at least 4 times a day., mom will sleep in the hospital. I told her I would any day go for the king size bed at home vs. the twin in the room that also becomes a baby cot when she tells me too sleep next to her in her bed.
Jokes aside! She did better than yesterday. Has been sleeping since 7:00 and I am going back to the hospital to snuggle up with my princess.
Continue to pray for Janvi and all the kids on 5200 unit!!

Sunday, July 18, 2004 5:12 PM CDT

Day 11
It started very slow as Janvi has been really moody these days. We commincate on one word only and most of the time its NO. Usually its the extreme where small things can make her happy and at the same time make her cry. Her WBC is 0.2 today and has engraftment rash allover her body. I dont want to get excited because now is the time for GVHD too. I would rather have myself emotionally balanced and continue to work on one day at a time policy.She got some blood this morning and platelets this afternoon. (Normal)
Her kidney function was high so they have increased her medication so that she goes more to the bathroom.
Becaue of the rash she calls her face a "plum that taste like an red apple!!!" ( don't know where that came from)SHe thinks dad might eat her today due to her cheeks.
I am home for few hours watching a movie(Dev) while dad and grandpa get to take care of Janvi.


Manu

Saturday, July 17, 2004 9:34 PM CDT

Day 10
Things might get a direction from now on. Janvi WBC was .1 and has a rash on her hands and her sole.Lets see what happens next. It is a sign that the body might be making new cells.She slept practically the whole day today. Nothing but sleep. The doctors say thats normal.
Meanwhile Bobby finally got the car fixed..HURRAY!!!
Dad and Bobby stayed home and had a relaxed evening. They deserve it. Bobby has been really working hard and he needs his break too.
Just gave Janvi her bath and she is fast asleep.I am making some cards and doing scrapbooking....
Good Night!!
Manu

Friday, July 16, 2004 6:17 PM CDT

Day 9
Started with a bump this morning as Janvi woke up at 5:00am with major chills. I had to give her 5 blankets and 2 sweaters to warm her up. Ofcurse her fever went up to 105. Did cold wash cloths on her and finally she slept at 7:30am. After 11:00 it was a pretty good day after a long time. Janvi is one of those who is happy all the time except when she is not well. She was her normal self and distributed candy on her morning walk to the staff. Later she had some art time with her nurse Ms Andrea who got her a beautiful gift from florida. Also they are having a nail salon party tomorrow at 1:00 pm. .Later her best buddy was there for 2 hrs .In the evening on her walk time Janvi made up a dance for all nurses and doctors to do if they wanted a candy. It was funny. I got a good break and I am ready to go home after 48hrs. Ready to sleep.
Looking forward to ..GROW CELLS ! GROW!!!

Thursday, July 15, 2004 8:08 PM CDT

Day 8
Very difficult day after a very difficult night last night. Janvi has been running a fever of 104..seems to me forever. She slept in my lap from 3am -7am and then she was going back & forth to sleep depending on the fever.SHe had a very tough evening where she threw up and along came fever. She had major chills and her fever went up to 104.9.NO tylenol just wash cloths. ITs too early to say anything good but the doctors were expecting this at this time. We are waiting for her cultures to come back meanwhile I am ready for another bumby night.
Is it too much to ask from God to give me few hours of fun time with janvi tomorrow? It has been few days that she smiled. I had to call Dr Martin to step in so that she could smile.
Manu

Thursday, July 15, 2004 10:14 AM CDT

Power of Friendship Boost!!
Please read the guest note by my friend Dolly who is putting this thing together for Janvi.
Janvi would love to have a hat adoned with pins/swaps from all her wonderful friends who think about her everyday. These pins can be store purchased or hand made. Please include a little note for Janvi describing her the pin or swap you made for her and why. Don't forget to sign your name on the note This special hat shall represent the presence of her friends beside her while she fights out her toughest battle.
Thanks again for your prayers and good wishes!
Manu

Wednesday, July 14, 2004 9:36 PM CDT

I guess there was more in store for me today. Janvi has 104 fever agian.She is sleeping. We will see whats happening in the morning report.
Janvi was very quiet for last few days. Today I read her a book about hats . The story made Janvi open up a little to me for the first time regarding her fears, things that make her mad and what makes her happy.For the first time she told me that she thinks dragon boo will eat her and put her in his stomach and she will never be able to come out again. I am glad it is out from her and we had a little talk about it too.She told me in her heart she knows that we will fight it as a family and go back to texas.
Now I understand why she has been so quiet and her thinking too.
Manu

Wednesday, July 14, 2004 7:28 PM CDT

Day 7 of Transplant
Today was a very difficult day for Janu. She woke up with 104 fever. They started her with Antibiotics and the fever came down. She was sleeping for the most part but was overall not her usual self. They said she looks like Day 7 transplant kid. Her mouth sores are better and is drinking water.She went to play Bingo for a little while but was tired soon. Her fever came back again at 4:00pm to 104 again with her joints hurting and was dizzy too. They started on another antibiotics ,so now she is on three at the same time. I can't believe that the doctors say this is normal and she looks good.( Ask a mom?)But I have lot of faith in the doctors here.They gave her some tylenol and her fever is down now. Finally she walked a little.Lets see what the night has in store.
Looking forward to eat a good dinner that dad cooked. I think its chicken. He did make parantha too.
Manu

Tuesday, July 13, 2004 9:48 PM CDT

Day 6 of transplant
Today was another wait and watch day for Janvi. She was not at all her usual self. Tired and sleepy for the most part today. She did have some forced fun but was not up to it too much. Finally in the afternoon she got some platelets. But suddenly she had some kind of reaction to it that she started to cough and her left eye was puffed up. This happened for the first time. She got some medication and then she slept till I left the hospital to come home for the night. Bobby is sleeping over in the hospital tonight on special request from the princess. While I enjoyed some fresh home made food after 3 weeks. Hmmm it was good (of course I made it!)
Janvi and Bobby are fast asleep while I gather the courage to face another day tomorrow to win this one for US!

Tuesday, July 13, 2004 7:26 AM CDT

Day 5 of transplant
God heard my request and sent me a lighter packet for day 5. She got some blood and platlets last night so she had more energy than what she had for past few days.She went for arts and crafts, had a teacher ms kim come in and finally she met her buddy from the best buddy program Michelle.She really likes her . What are the odds that her buddy had her transplant from Duke 5 yrs back. That was a big comfort zone for janvi and they talked about it too.Another hightlight was the long white dress grandpa brought for her from India. She really enjoyed wearing it.;
She spent some time in the evening with Bobby while dad and myself went for groceries. (I will not mention the car not starting again)It was a quiet night.
I was unable to update the page lst night as my the internet in the room was not working.
I want to thank all the friends who have been posting messages filled with love and blessing for janvi.It means a lot to her when she reads them.
Manu

Sunday, July 11, 2004 10:30 PM CDT

I will start calling it a normal day from now on if she got up 3-4 times at night, sleeps for 50n 24 hrs and feels tired. Doctors say that is normal at this stage of the treatment.
Janvi got to meet her grandfather today after 2yrs 4 months. She was shy yet excited. Later at night she told me that she is shy since she is seeing him after a long time. She would be fine next time.
Beside that, today she was kind of grumpy this morning but was the sweetest little girl at bedtime. It’s not her but the medication.
Nov 03 when Janvi finished her chemo with ALL and her hair were growing, I had promised myself that I will never cut her hair as she wanted to have hair like Princess Rapunzel. Today, I had to break my promise. It might be the smallest factor in this picture and is just a girl thing I guess . Her hair has started to fall and it was for her sake I had to cut it as small as I could do it. She was very upset with me and asked me if I still love her? Of course!!!, and my heart and eyes get wet as I type this.
Her mouth sores are becoming worse or I could say are at its peak. Doing her mouth care with toothbrush and 3 other washes is becoming challenge everyday. I feel that both of us like to push this responsibility on each other to spare ourselves from the pain.
If this was not enough, Sunday is her dressing change day too. It took us 1 hr to change her dressing .She would not let us do it.
I didn’t let her sleep all day so that she can have a peaceful sleep tonight.
Finally she slept around 9pm and three of us had a good meal provided by the local organization for the families.
I think it was too many things that came in today’s packet. I hope that tomorrow's packet is little on the lighter side.
Waiting for Gods reply soon!
Mother of a 5 yr old signing off
Manu

Saturday, July 10, 2004 5:28 PM CDT

Day 4 of BMT
She had little difficult night where she had some kind of reaction to the medication that gave her some chills. But besides that she slept well. I got to go home to get the apt ready for my father to come and stay with us. Meanwhile Bobby got some physical exercise out from Janvi. By the time I got to the hospital she was tired again. We did some worksheets and painting. Tried to make her do more exercise but she was too tired. She is sleeping right now.
I am so glad that during this time Bobby can work and fucntion that well. I might loose focus sometimes but he has been a rock during this time. He knows that he has responsiblity to take care but work cannot be neglected too. Today I know from where Janvi got her strength.
Meanwhile, Vinny has picked up papa from the airport and are headed to the apt. I am so glad to meet him after 2 yrs and 4 months. No matter how grown up we are its always nice to have your head on your parents shoulder.I am looking forward to that so that I can get recharged to continue this journey.
Live each day as if there is no tomorrow!
Manu

Friday, July 9, 2004 7:32 PM CDT

Day 3
Today was a very slow day. Janvi was not feeling well all day so she was sleeping 80% of the time. The time she was up , her nausea was troubling her and that made her throw up a lot.It is a wait and watch period. Nothing is in my hand(except hand washing )They say this reaction to janvi is the side effects of radiation and chemo.
Hoping for a better day tomorrow.
Manu

Thursday, July 8, 2004 9:58 PM CDT

This is my second post for the day. For the first time I am home staying by myself and getting time to relax and think at the same time. Bobby and janu are watching a movie in the hospital and I am too. But deep inside there is something missing...her laughter and her voice. In the past weeks I have learned so much about Janvi as an individual and not as a kid. She is strong and has a stronger will power to win it!
Today in the evening, even though her sores were hurting she wanted to brush her teeth all by herself. Her love for animals can been seen in every picture she makes and every drawing she completes. She has been getting so many presents in the mail filled with wishes for her speedy recovery. One of my best friends sent her a wooden butterfly coloring kit. She worked on it for hours and after the work is completed she wants to give it away to someone as a thank you for taking care of her.
At an age when she need to fight with me to take, she is giving, at an age when she needs to go have a summer blast she is happy with an IV poll, when kids want to eat junk she happy not eating. I am not sure where she gets this strength for surely I don’t have that in me as a mother, daughter or an individual.
Signing off with lots of love for my daughter for whom all I wish is life.
Manu

Thursday, July 8, 2004 3:57 PM CDT

Day 1
Had a pretty rough night and morning as Janvi was not feeling too good. Her mouth sores were really hurting her a lot. She woke up around 9 and was not talking for a pretty long time. She looked tired for sure. It took us some time to get our janvi back in action. It was difficult for her to let go of aunt dolly for all the love and bonding they shared. I got to go home for an hour while Janvi was busy doing art and craft in the hospital. I have updated some pictures of the transplant too on this website. She is sleeping right now and I am going to have my cup of coffee.
Manu

Wednesday, July 7, 2004 10:14 PM CDT

Day 0...The Big Day!!!!
Well today was the big day where Janvi got the cord transplant. We all were very fresh and very much ready for the cord blood to arrive. She got a big dose of steroids and benadryl. We took lot of pictures and as the transplant started…..Where was Janvi..fast asleep. She slept for 3 hrs and then she was very active. She told everyone that she had her transplant today. Oh..forgot....a part of the preparation was getting a pedicure and a manicure from Aunt Dolly. That was a very pampering thing for Janvi. She did ask aunt Dolly to move into the house with us.
She did really well for the most part of the day. Janvi has started complaining of her throat and mouth hurting. This is the start of mucositis. She started on morphine as a pain killer. That helps her a lot and makes her bounce back to normal. Her food craving are amazing. She was hung up on having Chalupa but that is a big no-no.Finally Dolly told her lot of bedtime stories and before she could finish the last one the princess was fast asleep with her new cord blood inside.
Manu

Tuesday, July 6, 2004 10:07 PM CDT

Day -1 to BMT
Last day for ATG today. Janvi body functions are doing good. She took a nap too this afternoon. Me too. Later Janvi had a special visitor all the way from Flower Mound.Dolly aunty. She was so excited to meet her. She played basketball with her for a liitle while.Later Dolly and myself went to On the Border to eat. We had a very relaxing time. BUT the fun part was our new car..it refused to start two times . So one time the valet person helped us and second time some other people outside the resturant. It was fun as I was of no use since I was unable to push the car and Dolly used all her strength and it worked. Got back to the hospital where Bobby is sleeping for the first time and Dolly is tucking Janvi in bed.
Tomorrow is the big day!!! DAY 0
Manu

Monday, July 5, 2004 9:03 PM ET

Day -2 to BMT
THe morning went pretty quite and nice. Janvi did some drawing for her Dr martin. She drew a little princess standing next to a knight saving her from a Dragon ( boo-boo). Bobby came around 1:00and I got to go home and took a good nap and did some cooking for janvi. Meanwhile Janvi was busy with her nurse Megan. She decorated her IV pole and had fun.But later she got really bad stomach pain . It was really not easy seeing the little trooper struggle but finally she went off to sleep. Hopefully she would be quite and rest all thru the night.
Manu

Sunday, July 4, 2004 10:42 PM ET

Day 3 /Day -4 to the BMT day
Janvi did fine for the most part today. She had lots of fun. She wokes up bright and early and was ready to go after that. SHe decorated her room again. Janvi , Andrea ( her nurse) and myself made ponies and castle on the room windows. Later Puneet and Bobby played some games with her and I went home for an hour. By the time I came back she was fast asleep for 3 hrs. Puneet also left for Dallas. Janvi got her ATG, steroids,benadrly,tylenol etc. Big on medications today. But she is doing good so far. NO fever so far but it can happen anytime they say.
Her taste buds are completely gone. SHe wants to eat but cannot due to no taste.She made me run around for noodles all over the hospital and when I finally got it...ofcourse the taste was no good.
Bobbby has gone home and janvi so far doing good.
Hoping for the best I sign off.

Saturday, July 3, 2004 9:24 PM CDT

Day -4 to transplant
Day 2 of the hospital. The second part went fairly smooth today. Puneet visited us from Dallas with tons of home made food made by aunty. It tasted so good. Janvi was vistied by another uncle, that would be Vinny uncle too.He also got some home made food. I got my break from 5-8 while Janvi was busy with these men.she was keeping them busy I heard.
At night I gave Janvi a nice pedicure so that her itching could be in control. She has a long day ahead of her tomorrow. The doctors said she would get high fever and maybe some rashes when she gets the medication ATG. The medication starts around 2:00pm and the fever kicks in around 8:pm lasting all night.It should go away in a day or two.
She has become everyones sweetheart in the hospital as they call her funny, cute and I heard there is a waiting list to become Janvis nurse.
She is adorable and the best part is she knows that too!!!

Saturday, July 3, 2004 10:17 AM CDT

Day 2 in the hospital and Day –4 to the big day!!!
Yesterday was a very busy day for all of us. Janvi finished her radiation and phase 1 of the war is over. She did win this one.
She got admitted in the hospital around noon. She loved her as it was decorated with really cool stuff: playdoh, bubbles, books and games.
The nurses are very nice over here. Infact the staff is way too friendly and accomdating. Each nurse has just 2 patients and that also next-door one. She sits in the middle at her desk and can be asked for anytime.
There is a kitchen and small rooms for parents to just relax and take a break. Lots of movies to watch for all of us. There is a play station too in the room.
Janvi was very tired and slept early. I had to go to Target to do some grocery. We all were very tired by the end of the day.
I was unable to update the journal either.
Today it’s a new day and hopefully betters one too. Janvi has already gotten her first dose of Chemo. She did lot of window decoration with her nurse.
I have decided to call my dad to come and help me out.
Will update the rest later.

Thursday, July 1, 2004 8:31 PM CDT

Day -6 of treatment and day 4 of radiation.
Janvi was really tired after being up last night due to itching. She got some sleep at 3:30am and had to get up at 7:00.Got radiation and some platelets too as it were 19 and her WBC was .7 only. That’s where they want it this far in radiation.
Well after a long day from 8 –5 came home and did packing for tomorrow admission in the hospital.
Janvi did lot of things for the first time today she saw herself in the mirror and said she does not like looking in the mirror anymore. When I asked the reason she said she does not want to talk about it. Then she spoke to Neha regarding her treatment. Neha is the first kid Janvi confided in regarding dragon boo. After keeping the phone she felt really nice.
Janvi wanted a candle light dinner So Bobby got her favorite idli and some chicken naan for us. Had a candlelight dinner with music and some dance. She really enjoyed and told me that she was sorry for every time she didn’t give importance to the family. She said the grace and enjoyed her dinner.I saw smile on her face,light in her eyes and faith in her heart.SHe could feel we are all together in this.
I am done with packing and really relaxed to start the second part of the journey.
Long battle but worth fighting !!!

Wednesday, June 30, 2004 9:07 PM CDT

Day 3 of radiation: Janvi was unable to get much sleep last night as a result she was tired in the morning. I dont think it was due to one of the side effects but sometimes she can be a regular 5 yr old who does not want to sleep. We came home after the morning radiation. Around 1:00 pm she had major itching. I was feeling so helpless as I could not put any lotion as she was due for another dose of radiation in an hour. We reached the hospital early and they gave her the medication. Thats it..she was right back to her happy go lucky self having fun with the radition staff.
Had a regular evening. Janvi is off to sleep now.Even though she does not say it I can see it in her eyes that she is saying a lot to me all the time. SHe is writing a journal for her kids and is making me write everything she is going thru.She looks pale and tired even though she will not say it or act like one.

Manu

Tuesday, June 29, 2004 8:49 PM CDT

Day 2 of radiation. She did wonderful. It was a full day with radiation twice today. From 8:30 to 4:00pm we were at the hospital today. Bobby dropped us in the morning and we both managed it great. Infact she had 1 hr of school time too with her teacher. She is getting very popular in the hospital as the “silly funny girl from Texas. When we came home Janvi got a surprise from Bobby’s work team with a balloon bouquet and a teddy bear wishing her speedy recover. Later in the evening we went to Toys r us and bought Janvi GameBoy advance with few games like “Lion King, Barbie and some movies that she can play on the game boy itself. Finally she is asleep and I am trying to relax a bit before the next day begins.
Manu

Monday, June 28, 2004 10:02 PM CDT

Today was the first day of radiation.I had a very difficult time last night thinking several times about radiation and scared too but Janvi was opposite of me..excited and happy. First thing she said when she woke up was "Today is the war day mom!"
The radiation was very easy and Janvi did great. The big thing was lying down still and she did because she was watching her all time love"Lion King"
But thing were different when we got home as she was really tired and her head was hurting. She slept for almost 4 hrs and then also tired. Later she went for a walk with Bobby to sit by the pool side and relax.
I had to force her to sleep as tomorrow is a long day with twice she would get radiation.
I hope I continue to get my strength from none other than Janvi herself. I feel blessed to have a daughter as brave and beautiful like Janvi.
Manu

Sunday, June 27, 2004 7:40 PM CDT

I hope I don’t get used to these calm days again for I know they don’t last for sure. It was quite like what it is before a big storm.
It was another easy day where I could catch up on packing stuff for the hospitalization, Janvi art and craft etc, my scrap booking supplies...everything needs to be sanitized. Janvi did GREAT with her dressing change..she was toooo good.
Well tomorrow is the big day where she starts radiation. Janu is excited about it.
She calls it laser guns by the name of boo-boo guns.
I know it will be a long battle that would have pretty rough days..but I have never been so ready for anything more in life…..as long this is the last one…is it?
Manu

Saturday, June 26, 2004 5:55 PM CDT

Today was one of the easy breezys days aftera long time. We got up late and good cup of tea with Janvi in the morning. Janvi spoke to her fan club in India and ofcourse her friends back home in Texas. It was so nice to see Janvi talking non medical stuff with her friends...being a 5 yr old!!!WE had a 4:oopm appt at the clinic to change Janu dressing.SHe did soooooooooooo good with that. Painful I need not say but it is Janvi I am talking about who snaps right out of the pain into her goofy stuff.
I have to mention that we went in our new car that Bobby bought today.Maroon in color,Janvi loves this car!

Hopefully we will have another good day Sunday!
Manu

Friday, June 25, 2004 11:17 PM CDT

It is 12:30 and I am still on the net catching up on emails. Janvi watched her movie ,had her dinner and is fast asleep. She said today in the hospital that she is ready for the"war" with dragon Boo ( another name for cancer)SHe is ready for Dr Martin to shoot his laser gun (radiation) and kill the Dragon boo boo inside her blood.A part of her was happy and a part of her scared wondering if it will hurt her or if Dr Martin will be successful or not in winning this war. I told her its a battle and we WILL WIN IT!!Life cannot be that bad afterall!!!
I am prepared for the transplant and the radition therapy to begin. Bobby has been strong in his area, preparing for this time to come.
When yesterday you said to grandma that "every time I get a poke it seems like grandparents get a poke in their heart"
Janvi, when you read this journal few years from now ,rememeber you have taught lot of people in the family and friends true meaning of life. Thru your pain we all learned how to live and love. I,as a mother learn from you the lessons of life that I could not learn in my life span so far...you are a true princess!! You do justice to your title of a Princess!!!

Friday, June 25, 2004 8:44 PM CDT

Today was a much better day then any day Janvi had so far in NC. I could catch up on some sleep and ofcourse Janvi too.Bought the car,got the cable connection etc. Janvi needed some blood today so that too 6 hrs in the hospital. But it was fairly easy as she enjoyed watching a movie while getting her RBC. Bobby could catch up on some office work too.After that we went to super target and blockbluster to get started on Fri night..... but I am hopeful that more will be on its way..hospital or at home as long as we have each other.
This experience is teaching me to appreciate life everyday after being so close to something I cant even say it or write for my child.
Manu

Thursday, June 24, 2004 4:56 PM CDT

Today was again a very difficult day for Janvi but that was expeceted as we were thinking it would be really easy. She got her line put in today. SHe was supposed to be in the OR at 9:00 but since her platlets were low they had to order new platlets so she went to surgery at 12:00. Ofcourse hungry for 12 hrs and thirsty too.I could go in the OR till she went off to sleep. The nurse messed up this time as she thought Janvi needs platelets before surgery so she tried in vain to put IV on Janvi. IT was tooooooooo difficult to watch her go thru this but the nurse failed and Janvi cried a lot. Then the doctor came and told us it was a mistake as Janvi can get transfusion during surgery. Finally she went (ofcourse she wanted to study so we called her teacher Ms Kim)At 2:00 the surgeon came and told us it went fine but they accidently cut little bit of her artieries so we have to wait 2 hrs more as they needed chest Xrays.
At 2:30 we saw Janvi fast asleep and in pain due to the surgery. Was difficult but as I know this is the start only. Her nurse was too nice as all the doctors at Duke have been so far. I am so glad with the decision to come to Duke.
FInally we got home at 4 and she ate her food and is fast asleep like a baby.

Tuesday, June 22, 2004 6:08 PM CDT

A lot has happened since the last itme I wrote here.
Right now I am in NC for janvi bone Marrow Transplant. We have moved into the apt and Janvi is going throught the pre transplant procedure.
I will update this page soon as I am still in the process of settling down.
Manu

Wednesday, May 26, 2004 10:43 AM CDT

It was another roller coaster yesterday when Janvi developed fever of 102.7 and they told us "come prepared". This time I was..for everything. But when we reached the hospital her fever went down to 100.4 without medication and her ANC was 1134, highest it has been since this year. We have planned a BM aspirate on the 15th of June to see what happens. I still belive in miracle...it will happen!!!
Manu

Tuesday, April 27, 2004 3:20 PM CDT

Janvi had been admitted in the hospital for some kind of skin infections. But her ANC is just 240 range. I am scared but thats how I have been for last 4 months.She had a nice time in the hospital even though she got poked 11 times she did not care much.She is a strong girl!!!
I wil get her counts again on Monday and see what to do. Till then no school only mom!!!

Friday, April 9, 2004 11:00 AM CDT

Sorry I am late in posting the good news. janvi test results came back on Tue. Things might turn around.I hope and Pray. Her FISH test looks 46/200 and after a long time they saw 46 xx chromosomes too. So Dr Martin has said to wait for two months and repeat the Bone Marrow in two months.My mom has prayed a lot of Janvi. Finally she can go back home,India with little bit peace of mind.
Manu

Monday, April 5, 2004 9:48 PM CDT

I am starting this new journey with the anticaption that the it will have a happy ending.
Janvi was dx with MDS on the day she finised her treatment of ALL ..teh very same day.She has got 3 bine marrows since then. Her last one was on Mar31st and I am waiting for her results.We know the road leads to a BMT and we decided on DukeUniversity. We are prepared but still hopeful.lets see what happens.

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