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Friday April 30 2010
Today was Razaks first visit to the Long Term Survivor clinic at TCH. What a day. We left early in the morning, just like we did back in the day when he was fighting the fight. Back then he was so small we would just pick him up out of bed sleeping, place him in the car carefully so as not to wake him. Then our day would be test afer test after test.Then would be treatments and surgeries. Asra and I were just two lost souls trying to figure this whole ordeal out.
Today was different, we were excited to head over meet all our old friends, Razak was trying to remember, tests were still going to take place but all non evasive except for a blood draw. ( no Tears).
When we walked onto the floor, he was surrounded by all his nurses and staff, all so proud of what a fine young man Razak had become... he fought he survived,now he inspires.
So now every year for the rest of his life he will make that pilgramage to visit TCH.
The tests were all to see the effect of the chemo, his hearing, his heart, his growth and his development. All were fine.. there were some changes but nothing anyone would notice.The chemo meds stick around as much as 10 years...he will do fine.
JAI MATA DI
Tuesday, November 18, 2009 6.00 AM CST
Today is Razaks 7th birthday. Many people have asked how did you make it through such a challenge. We always believed that Razak would do fine. We never prepared ourselves for the worst. I could never imagine a life without Razak.
So Razak is here stronger than ever, always and adventure and forever a joy to anyone who meets him. I just could never imagine a life without him.
We have a big year ahead...Rishi turns 18 next week, graduates highschool and then runs away to college.
Happy birthday little Razak...with all our love.
Tuesday, September 15, 2009 10:43 AM CDT
This year we saw the loss of two great actors, Farah and Patrick. Another passing was one of Razaks fellow warriors, a truly vibrant little girl who gave us all hope and inspiration. She never skipped a beat, from horseriding to soccer, this young lady did it all.
There is life after cancer and some day it will take a pill or two to get rid of it.
Little Razak stays healthy, a long term survivor and an inspiration to those who are fighting this demon.
Tuesday, December 9, 2008 4:21 PM CST
JAI MATA DI
It has been a long time since I have updated. I guess time just flies when you are having fun.
As of March, Razak had his last Cat Scan and came out clean. WE ARE officialy DONE with scans !!!
Now he will just go for minor followups for chemo complications.... a little above my paygrade.... I just have my boy and I am happy.
In August, Razak did have his last surgery: to pull about eight teeth out. This was due to eating too much candy and from the Chemo, but all is well
Razak has played two seasons of T-ball, stated swimming lessons, and now rides a bike, with out training wheels.He also voted Obama...That, he will just have grow out of.
He is now in kindergarten, reading and writing.
When we started this journey we had no idea where it would lead, the treatment was so agressive that our biggest fear was we would lose him to that.
I met many parents who weren't so lucky, so I think why my child?... Well there must be greater things to come.
Thursday April 12, 2007 7:25 PM CDT
JAI MATA DI
We are two years into remission... the last scans were clear. I think we are really getting past holding our breath waiting for the news. Razak is no longer taking any sedation so things move much faster at the hopital.
Razak is now in T-ball and loving it..
Rishi has become a democrat and is off to Austin for a convention.... we will send him for Cat Scans when he gets back.
Sahara is just as cute as her Mom.
So life is good and we just feel blessed everyday when we awake to our three lunatics.....we just would not know what to do without them.
Wednesday, November 8, 2006 6:25 PM CST
With 3 crazy kids in the house, I am losing sight on my journal.
JAI MATA DI
Well Razak had scans in Sept. This was after 6 months instead of 3 mos. All was well and as he has gotten older they are getting less traumatic.
The great news is that he will only scan 3 more times over the next 18 mos and then no more. 18 months after that he will move to the long term survivor program.
Watching him grow each day and being blessed with a normal childhood makes Asra and I both think that there was "divine intervention" Had he not had a urinary tract infection we would have never caught the desease in such early stages, his chances of survival would have been very poor.
So when we say God put us here for a reason, it will surely be interesting why our child beat the odds.
We still have to hold our breath. We are not at the finish line quite yet, But I think the best is still yet to come.
Rishi is in High school, Sahara continues the tradition of the Oberoi's with her love for food.
Next update next March so Merry Christmas, Happy birthday Razak turning 4 Nov 18th !!
Monday, April 24, 2006 9:28 PM CDT
Life is so busy now with three crazy kids, but an ultimate pleasure.
So we had our March scans, which also included a heart echo and a kidney test. As strange as this may sound we had the best time yet. Going back to the hospital is a very surreal experience. Both Asra and I feel very safe, our worries and concerns seem to diminish during that short time we are there.
The scans came out clear, no sedation, no NG tubes.... and no down time for Razak. He does not even fight the IV. He understands that he has to be poked, and although he cries, he does not fight it......what a brave boy.
So the best news is that he moves to 6 month scans instead of 3 which means he is getting safer and safer from this wretched thing coming back. JAI MATA DI !!
I just wish that all the children we meet have the same prognosis.
We just take each day as it comes knowing that there is no promises, God has a plan for Razak, maybe to find the cure or maybe just to hold the hand of the many others who have to face this journey.
Rishab is in Washington DC with his school... for a whole week.....packed him lots of extra underwear. He got his wish and will be joining Strake Jesuit college prepartory School in September. Now a towering six feet tall, we are so proud of him.
Sahara continues in the tradition of the Oberoi's to grow like a weed. We need a new Wendy's just to feed the three of them.
Again our prayers go out to all the warriors and all the angels.
Keep us in your prayers and Razak in your thoughts. Let his strength and determination be your inspiration as he is mine and let each day be a new begining.
JAI MATA DI !!!
Sunday, December 18, 2005 9:47 AM CST
We had our December scans. This time NO SEDATION, what a relief. Each time its gets less traumatic for Razak. As expected we had clean results. Still it is a gut wrenching week.
Big brother Rishab is in India for the holidays, which makes for a very quiet house, but he will be having fun. Wish we were there.
Razaks Birthday was a blast, he just relentlessly climbed the slides to come tumbling down... what fun, even Grandma had a go. We just never take any day for granted.
Sadly we lost another warrior, Fatima who was one of Razaks alum in bone marrow, lost her fight with Neuroblastoma.Please say pray for her and her family. This is a vicious desease, the reality is it is deadly. Fatima fought so hard, even going blind in her last days. She was four years old. She was called the princess of the cancer unit.
Razaks pandit who gave every revelation on his treatment passed away in November, we feel very lost without him, as his power of prayer lead to all Razaks strong health, but I know he will always be there watching him.
So our baby boy is slowly turning into a young man each and every day. Stronger and stronger it is hard to keep up with him. He makes us so proud, I know when he is older his calling will come to help those who have to go through this ferocius battle, and survive.
JAI MATA DI
Friday, November 18, 2005 12:24 AM CST
To day is Razak's 3rd birthday. Asra is busy baking him a cake. Later Rishi, Razak and I will go to see Harry Potter, then come home and eat cake. It has been over a year since Razak ended treatment and each day the chances of his survival get better. The "magic" year is when he turns 5. By then he should have grown out of the cancer. It is so nice to See him skip around the house hugging and kissing everyone at each stop. He has started playing with 6 foot Rishab now and drags him out every night to play basketball. We have never forgotten what he went through and how lucky we are that that our beautiful child was brave throughout the treatment always smiling. I am so proud of my little boy, although I call him my hero, he has become the hero of many. To meet him is to understand the power of religion, faith and prayer.Razak has become an inspiration to those who are in the same fight.
It is so much fun each morning to wake up to the craziness our 3 children bring, and at the end of the day Asra and I are so exhausted.
Well next week is the party, this year we will jump around in over sized inflatables, eat more cake and drink coke.
So happy birthday Little Razak.....and of course happy birthday to our new man of the House Rishi. It still seems like yesterday, I was chasing this little imp around the house.
JAI MATA DI
Tuesday, August 23, 2005 6:38 PM CDT
More excitment in the family. The Pinto's along with their endless extended family welcomed baby Siena into the world August 11th at a record breaking 8lb 13oz. The biggest baby yet. Of course just like mommy a total looker and with time a complete daddy's little girl. The cousins are ecstatic, grandparents overjoyed and the aunts sent the uncles out to add more shotgun ammunition to their inventory.
Just like the rest of our children she will always be blessed.
JAI MATA DI
Tuesday, June 28, 2005 5:56 PM CDT
JAI MATA DI
It has been a while. Only have the best to report. Razak went for his scans 06/13/05. They were a little more traumatic than usual. As he gets older the sedation tends to make him more combative. We did finally make it through. Of course the next 4 days we are biting nails until the docs tell us he is clear.
So now we a get a three month break until the next set. Razak is now in a montessori program 3 days a week, he seems to like it. as always the Oberoi kid is the biggest in the class... Rishab is now 5'8" Razak is amazingly strong, never shows any fear of his treatments, regardless of the discomfort, just a true inspiration. We know God will let him live to fulfil his dreams.
Added to all this we had some excitment in the family last Monday. Asra gave birth to a very healthy baby Girl.... 8lb's 12oz 20 inches. Exactly the same as Razak. So we happily have two boys and a girl... what more could we ask for. We named her Sahara Sia Oberoi. She is as beautiful as her mother. It's falling in love all over again.
Asra is doing well, she has a few weeks of recovery but as always a trooper. Of course absolute excitment in the house, Razak has become a runner for his Mommy, not a sign of sibling jealousy..... just does the right thing. Rishab is our child advocate and again said his wish has been granted.
So as always we leave you as a happy family, with good thoughts. We thank God each day for our wealth of children. So many sick children we see at the hospital, many of whom we may not see again. So each day is blessed... but then it has always been that way.
Tuesday, April 12, 2005 7:42 PM CDT
Well no news is GOOD NEWS. Razak is now off the accutane, and had his 2nd set of scans since transplant. The scans were clean in fact no sign of even the residual scar tissue. We are ecstatic.He is now officially off treatment.
Both Razak and big Brother Rishi are growing like trees. We spent spring break in Costa Rica with the Grandparents... that was fun for all. Rishi amazed everyone with his Spanish.
This Monday he started a Montessori program, both Mom and Grandma cried all day from seperation anxiety... Razak had fun.
It's such a wonderful feeling to see him so healthy and vibrant. This is not only the miracle of medicine but also the power of prayer.
Please share your thoughts and prayers with my good friend Vinod, and little Erin there fight continues, and I know they will be victorious.
Next scans in June before the new arrivals: a new sibling,a cousin,and Mommy's new spa ...
Monday, December 13, 2004 9:17 PM CST
We had our first follow up scans last Wednesday. Not as traumatic as usual, Razak actually managed to drink the contrast. The next day the results came in as clear. Again a small sigh of relief. As time goes on they will get bigger and eventually go away.
More good news Asra and I will be adding another to our collection of crazy children next June. Rishi is excited and wants a sister, Razak another sibling to fight with. We are not going to find out, boy or girl...I love the suprise..... besides they will still get Razaks hand me downs anyway.
Christmas we are off to South America, a well deserved trip for all both boys are practicing for this 14 day eatathon.
Life is looking good, in fact it's always looked good.
JAI MATA DI
Thursday, November 18, 2004 11:12 AM CST
To day is a great day in The Oberoi Family. This time two years ago a miracle came to our house… baby Razak. Today we celebrate another year and look back with thanks and praise that Razak is cancer free. Although we have a long wait ahead of us to be told that he is truly cured, we still rejoice in hearts what a wonderful child we have. This weekend we will eat cake and Pizza drink Coke and play with farm animals, Razaks favorite thing to do.
So from me to you baby Razak I never knew I could love someone so much and love them more and more everyday.. stay strong stay healthy so I can fulfill your every dream and watch you grow into a man. You are a hero to many, who has fought such a hard battle a little man, to me you will always be my Baby Razak my hero….. HAPPY BIRTHDAY.
Love Daddy
I know everyone is asking, how is our hero Razak. The last time we left off, we had aborted the second stem cell transplant. However that one round of chemo hit Razak so hard that his blood counts did bottom out and took almost 20days to come back. We did in fact end up giving him his stem cells back because it took so long for counts to move. We said our farewells to all the wonderful staff some patients, left many of them with our prayers.
Finally it felt so good to be back home, not having to prepare for our next visit. Rishi had already started 7th grade, it still seems like yesterday I was chasing after him to change his diapers.
A week later we went back for scans and a Bone marrow biopsy…everything came through perfect…..no detection of any cells……Jai Mata Di. We were now scheduled to get Razaks central line removed. Two days before that surgery he spikes a fever. Back to the ER. After a few hours we all agree it’s a gastro virus. He later passes it to his cousin Annika; even Rishi is in this loop somewhere. Thursday we have the surgery. The big day. We are in and out the hospital within three hours. A week later Razak has his first bubble bath. No more dressing changes, no more stares when his tubes show. Razak even realized they were gone.
Rishi decided to run for class Vice president. We put together a great campaign and his speech. The day of the election I happened to be at the school. What joy when I heard the announcement, school Vice President Rishi Oberoi. That evening at the school we got many compliments on his campaign and speech delivery. Asra and I are so proud of him.
We finally managed to make a trip out to Lakewood Church and meet cancer survivor extraordinaire Dodie Osteen. She has a healing session once a month at the church. When she met Razak she knew who he was immediately. She prayed for him and helped us thank God for taking such good care of our child. She gave him a beautiful prayer quilt and asked God that his cancer never return. We joined her in thanking God for helping our child through this very harsh treatment, and putting Razaks disease in remission.
Many have asked about our belief in God and have we always been this dynamic in our beliefs. We are a Hindu family, and as Hinduism teaches us we must be dynamic in our beliefs. Although we may not embrace Jesus as our lord and savior, we believe there was such a person, who had great healing powers, who had a connection to God, and who indeed may have died to save many. It is our dynamic religious beliefs that have given us the ability to have such strong prayer for our child. It has allowed people from all religions to help us pray for Razak, and allowed us to pray for many other children, with such life threatening diseases. It is amazing how many people we have met that have shrugged religion as having the power to heel. If we look at Vashno Devi, the infrastructure of the pilgrimage has many people of Islam who operate the journey. The porters, the vendors, the security…and each one of them will greet you JAI MATA DI. No religion has a monopoly on heaven.
Without our faith, Asra and I would have never made it through this. From living in our beautiful spacious home to being confined to a hospital room, and even to the floor, we never had a disagreement. We knew we were here for reason, we know God had chosen us, but we knew it would here for the last time. Our outlook in life has changed, our goals have changed. Our lack of religion in society is what has caused the family value system to be on such a rapid deterioration.
I cannot express how good it feels to be home. The best part is to see Razak. As usual
eating, in fact now has to eat on the hour. His hair is back… for me that was
the worst part…is losing his hair.
We have so many people to thank, but of course our journey continues. For the next few years
we hold our breath as we do follow up scans every three months beginning December. We want
none of you to forget our child and continue to keep him in your thoughts and prayers.
We have a new addition to our family, Shibi a white Persian cat. He is putting up with Razak, I
think a few more pounds he may bite back.
Halloween weekend, we all went to Disney along with Aunty Saima and Uncle Sergio.
Stan Johnson the owner of AMS, a media company was generous to provide us with park
tickets, and then to a wonderful surprise. He arranged for Razak to be escorted to
Mickey’s House and spend some one on one with the famous mouse. Aside form saving us a
lot of time it was really neat to see Razak interact with Mickey. Razak of course rode every
ride he was allowed on with such glee ate many ice creams and just had a blast.
Jai Mata Di
God Is Great
Monday, August 2, 2004 8:38 PM CDT
We start the final leg of Razak’s journey. Last Thursday, Razak began his six rounds of radiation. As usual we met with a wonderful Doctor, and as always not given any information on cure. We were again overwhelmed with all the side effects Razak will face because of this treatment. Asra and I look at our little boy, such innocence and yet such fighting strength, he has to beat the odds. We just would be lost with out him.
As you read the guest book so many are praying for him and his cure. The sad fact is there is no cure per se... only the opportunity of going into remission and then outliving this disease.
When Rishi was four years old we took him to Disney Land along with my parents, Asra’s sister Saima and husband Sergio. Rishi decided he was too big for a stroller but too small to walk around the park. So for about most of the day he sat on Sergio’s shoulders.
Whenever Uncle Sergio would visit Rishi would look forward to a few days of no discipline and unruly behavior. Once in San Diego we all went hiking. The hike took longer than we anticipated. The girls got very tired and started to slow down. Ahead I see what looked like a silhouette of the hunchback of Notre Dame: then realize that it was Uncle Sergio carrying 10 year old Rishi on his back, as he was tired.
I have always admired their relationship, and look forward to Razak enjoying “Uncle Sergio” as much as Rishi does. Their behavior is like watching a sitcom, one that I have thoroughly enjoyed over the years. Now Razak is getting old enough to part of the mischief. Sergio is the crazy uncle that every child wishes for. Someone who is completely attentive to their misbehaviors, also someone who instills the importance of family and treats them with unconditional affection.
Last week uncle Sergio sent a beautiful nursery rhyme wall clock with Razak’s name inscribed on it. Along with it came a letter…….a real tear jerker so be warned when you read this.
“Dear Mr. Razak,
I hope you’re feeling well and the chemotherapy isn’t bothering you too much.
I wanted to send you a small gift that I hope may someday help introduce you to a new concept, time.
As you get older and you begin to learn, you’ll become aware of what time is. (Having Lodhi genes and therefore being plenty smart, I’m sure you’ll learn sooner than most.) I saw this clock and I decided to get it for you because someday I want you to look at it when you’re totally well and you’ve beaten this awful disease. I want you to realize that with each passing second, minute, hour and day you get further away from this horrible time. I want you to look at this gift and realize that there was a time when you were in terrible trouble and it was a time when Razak Oberoi faced his destiny and fought with all the might his little body could muster.
One day I awoke, little Razak, and I was 30 years old. I wondered, “Dang, where have 30 years gone?” Soon, God willing, I’ll be 40. That’s what I want and pray for you, little fella. I want you to wake up one day, fifty, sixty years from now (it’s all downhill from there) and realize what a great life you’ve had. Keep being strong Mr. Razak, the rest of your life is in front of you, this time will pass.
Love Uncle Sergio”
So little Razak, so many people want your companionship, so many people want to enjoy your mischievous smile, and I wonder where does my little boy get all this strength to fight… it’s great that he does.
We have enjoyed the past two weeks at home with Rishi, eating ice cream and going on day trips with cousins Vikrant and Annika. Razak has been full of energy and of course the We were admitted on Friday 7/30/04 to begin our second transplant. Razak received his first round of chemo early the evening. Around 8.00pm he spiked a fever. Our hearts just sank, as this was not a side effect listed from this Chemo drug. Within a few hours he was back to normal. Nonetheless blood draws were taken to check for infection. The next day we found out there was a line infection again. We did not want Razak to go through another surgery. Antibiotics were started. Later that afternoon, we are informed that the transplant needs to be aborted and would be started again after the infection is clear. Asra was devastated, both as a mother and as a physician. This means that Razak had received an intensely toxic drug for no reason.
This does shed another light on the situation; we are considering very seriously whether we should even do the second transplant. These infections can be life threatening for a child with no immune system. Razak is NED he has had one transplant and will go on to Accutane, a bio-therapeutic drug that is proven to prevent recurrence. Asra sincerely believes that spiritually Razak is free of disease; he is under Mata’s watchful eye and always will be. His destiny is written to lead a great life and create his dynasty.
Monday we will meet with the Bone Marrow Transplant team and the Neuroblastoma specialist to see if this is an option. We pray that God helps us make the right decision.
Recently I have been reading much about John Edwards and his anniversary celebrations at Wendy’s, one Frosty and two straws. Clinton’s favorite dessert was Mango Ice cream, a specialty at Shiva Indian Restaurant. This is heart breaking. Please George start eating Curry and Rice before you lose our vote!!
08/01/04
A sad day for the Neuroblastoma warriors. Another has fallen, Alex Scott. Alex has been fighting neuroblastoma since she was a year old; she was just eight years old. Alex created lemonade stands around the country to raise money for Neuroblastoma. She raised over $750,000.
http://www.alexslemonade.com/
Today we met again with the head of Bone Marrow Transplant, Dr. Krance. His feelings are the same as ours. Razak is not doing well with this procedure and at this point we should discontinue the treatment. The risks out measure the benefits substantially. The infections could be fatal if not life changing. The chances of improving survival do not change much. Asra had already questioned the efficacy of doing a second transplant given his reactions, so was relieved when the doctors said as much. In addition, somehow we are both so confident that God intends Razak to live that no matter what treatment he receives, we find much solace through our own (and everyone else’s) prayers. So this will become a closed chapter and will not be dealt with again. In many ways this is a good day for us as now Razak can start moving on to leading a “normal life” which means no Baskin Robbins EVERY DAY! Moreover, no more McDonald fries. We still a have a few days before we leave the hospital to clear up this infection and a few more rounds of radiation. We already see Razaks hair growing back. Although we will still have to hold our breath for the next five years, today we feel GOOD!
JAI MATA DI!!!
Thursday, July 1, 2004 11:40 PM CDT
JAI MATA DI!!
Before I start the update we do need some help. Since our treatment Razak has had a lot of blood and platelet transfusions. Any one who wishes to donate blood, or platelets to the Gulf Coast Blood bank, please do so in the name of R. Rakesh Oberoi a patient at Texas Children’s Hospital. This will give him credit on all the blood products he has used and will be using over the next few months.
It has been a while since our last update, so lots of news ahead. May 27th Razak had his Mibg scan which showed no evidence of disease……Razak has no cancer. Probably one of best days this year. Later that week our dear friends the Rappoles came over for a visit, we had dessert and a nice glass of cognac. Moreover, the visit was comforting, and Razak took to Mrs. Rappole very quickly. Maybe next time Asra and I want to go out we may drop Razak off on their door step for the evening :) Dr. Rappole and I go back to my college days and he has always been there to celebrate my success, and now to help us through these difficult times…. Truly great friends.
A few more tests to follow, then the bone marrow transplant. We entered the BMT unit June 3rd. This was to be the hardest part of the entire treatment, both Asra and I did not know what to expect. Essentially the treatment involves 4 days of very high doses of chemotherapy, followed by the stem cell rescue. The chemo destroys the bonemarrrow, which means no immune system until the stem cells engraft. The process is all done by infusion, so no discomfort on that part. The treatment however is harsh and can have many side affects.
The BMT floor only has 11 rooms, it is a limited access floor. The atmosphere is very still, no patients out on the floor, again because the treatment is so grueling. So we enter the room to be welcomed with a huge care basket. In it was everything from toys for Razak, a calling card and a 30 day parking pass. (Daily parking is $10.00). There was also an invitation for a Saturday brunch on the floor. How is this…? I know the insurance won’t pay for this. It’s all provides by His Grace foundation. Grace is young cancer survivor whose parents created this foundation just put some ease on the patients and the parents during their stay during BMT. Many parents can spend over a month on this floor helping their child recover.
We began the chemo, during this time Razak was usual normal self, the only child dragging his IV pole up and down the hallway, always in the playroom. After 4 days of the chemo Razak was given a day’s break. On Wednesday was the big day. There was a banner placed on the door “Congratulations Razak Today is Your Big Day” At 10.30 his stem cells arrived and within 15 mins infused back into Razak. The next few days were uneventful. Saturday I went home to prepare Rishi for camp. This was the first time he was going to be away from home by himself. We packed a huge trunk of clothes, then with Uncle Vijay, Grand-dad and cousin Vikrant we went for a Fathers Day dinner at Fogo De Chao. What is with these boys and appetites? I think I need to set up a foundation just to keep them fed. We missed Razak throughout the dinner….. I think the restaurant was a little relieved… he would have out eaten the children’s price.
Sunday morning Rishab, Nikhil and Madhu, we head up to the hill country to camp. The drive was about 6 hours ( got lost on the way) the camp was gorgeous. Next door was the girl’s camp…hope it stays that way! We got the boys settled in, met the very friendly young counselors, who scared us…reminded us of us when we were that age…beer drinking idiots. The camp looked great and I am sure they are having the time of their lives.
I finally got back to TCH around 9.00pm. Razak looked terrible. He had started spiking fevers. At about 2.00am he records a fever of 106. The next morning we have to do a CT scan. Razak comes out of sedation very combative. When we reach the room, we find out that Razak has developed a fungal infection and his line has to be removed. This will be surgery #5. The line cannot be replaced because it may get reinfected so a temporary line has to be placed. Again the 3 of have to make that walk down to the theater…the feeling of helplessness is indescribable. We have the greatest surgeon but still it is so hard. Again we pray that Mata will watch over him. Worst is the fact that Razak is still combative from the morning sedation. We just hand him over the nurse and grit our teeth. The surgery was short, he was out within the hour. Again his reaction to the sedation drives him crazy. All we can do is wait for the meds to wear off. Finally around 10.00 the meds are gone and he falls asleep. Nobody had slept since the Saturday. Monday things look worst the fevers are continuous. To make things worst he starts nose bleeds, because his platelets are so low. Poor Razak looks so listless. We have never seen him so sick. He is on the “big cannon” antibiotics, no appetite so he is on IV nutrition. Suddenly we are living a nightmare. The next day the infectious disease doctors come in. We are fighting a bad infection and all we can do is wait. Unfortunately this is what BMT does. The immune system is so suppressed that patients are vulnerable to any infection. The next 3 days are miserable………….we have just never seen Razak so sick……he has not moved from the bed, nor eaten any thing. A lot of nausea, nose bleeds and looks lifelessness. The only consolation is we have great Docs and our faith in God will get us through this. By Saturday things have started to turn around. It seems the stem cells are beginning to engraft, which means his immune system can now start to fight the infection. Another problem, Razak has not been on his feet for almost a week, so may need some physical therapy. Saturday things are turning around, we begin to see the shine in Razaks eyes again…he ate a couple of French fries ( McDonalds; will need lots of therapy to fix that problem..Not him , ME). Still he is very weak. Razak is truly a fighter and will get through this. The scariest part is we have to do it again next month. Although most of his meds are through and IV some have to be given orally. He always opens his mouth and takes them with no fuss. No holding his mouth open or force feeding them….he just takes them. I have a feeling that he knows what he is fighting and that he has so much to do in life he has no intention to lose this war. We have no intention of losing this war.
Sunday 6/27/04
We are on day 17 of our admission. Razak is beginning to get better. The Doctor thinks we should be home by next Tuesday July 6th this would have put this stay at 28 days. Well we get about 2 weeks at home as a family and then back in for the 2nd transplant. So during our stay we celebrated fathers Day, my birthday, our anniversary, July 4th and mourned the death of Ronald Reagan. We know we won’t be here for Xmas. We lost two great heroes this week. Matt Stepanek passed away from MD; a published poet, a true statesman and a peace maker all by the age of 13. Attendees at the funeral included President Jimmy Carter, his best friend and Oprah Winfrey….so much achieved in such a short time. Rishi has read two of his five books.
Sadly another Neuroblastoma warrior Paige Rutter passed away in her parents arms. She fought hard, and her parents worked so hard helping her through her battle. Our prayers are with her as she rides the clouds through heaven, finally at peace.
Wednesday 6/30/04
Happy Birthday to Me!
This morning was a follow up CT scan to check for infection, tomorrow is back to surgery for a new line placement, then a few more days of recovery.
Monday will be our 8th anniversary. 8 years of blissful honeymooning. It only seems like yesterday, that there I was trying to get a date with this hot chick, trying to woo with a free dessert at our Indian restaurant. I remember picking her up for dinner and talking about chocolate and other favorite foods; what would we need to have in common? our favorite Little did we know that this would be the beginning of the rest of our lives together. Everything over these few years has been more than I could ever imagine. A great career, wonderful children, a beautiful home, all in part to a great partner. Would I rather be any where else? Not a chance. Our destiny was chosen, although with struggles, but still one that I think would compare to heaven. We are in the best place in the world to help Razak surrounded by great doctors, moreover having the best in family and the greatest of friends any one could have. So why would I want to change anything. ?
Wednesday, May 26, 2004 10:36 PM CDT
JAI MATA DI
Well it has been a while, lots of friends asking how Razak is.
Razak completed his 5th round of chemo a shortly after his surgery. It did weaken him some what, we noticed a slight limp from the soreness, and also his appetite went down, not to mention some vommitting and nausea.
Asra’s younger sister Aunti Saima flew in from San Diego as a surprise last Wednesday, unbeknownst to Asra, so I had to make up an excuse to leave the house 9.00pm to pick her up. She came not only to see Razak but also to celebrate Asra’s 21st birthday……and not a day older. The weekend went well; we took the boys to Kemah Saturday. That evening Razak being to look a little “off”. The next day Asra’s birthday we headed out for brunch, however Razak just was not his usual self. After lunch we dropped Saima at the airport and then headed home. By then Razak had spiked a fever and became very lethargic. Thank goodness for Grand Parents, they came to get Rishi so Asra, Razak and I could head off to the ER. We called ahead so they could expect us. No sooner we get there, temp is 98.5 and somebody is a ball of energy running up and down the always of the ER. Nonetheless we are admitted and stay until Tuesday, just to check Razak out. Everything came back fine; he got some antibiotics and some platelets.
The rest of this week and next week is essentially a barrage of tests to get ready for the Bone Marrow transplant.
Thursday is the Mibg scan which will tell us if the cells on Razaks skull have gone……we are holding our breath it would be another nice break if they were to be gone. None the less treatment will continue.
Our child is now in Mata’s heeling hands and we pray that she will always look over him. Without him we would be heartbroken.
Many have asked us who Mata is. Mata is mother Maa Vaishno Davi, one of the more powerful manifestations of God. She is one that can heal, that can bring peace and tranquility when lives become besieged with such havoc. Many people spend there whole lives look for a vision of Mata, an example when we did our prayers; this is a time that many people believe Mata will appear. The best vision one can have of Mata is by seeing her powers at, work. During surgery we truly believe Mata held Razak in her lap as the surgeons worked away at the tedious task of removing any tumor, or residual they could find. It is Mata that guided there hands through Razak's small body, with ease so his recovery was so rapid, it is Mata that will, we pray give Razak the longevity of good health. It is the prayers of you our friends that will help Razak through this.
“The temple of Mata Vaishno Devi lies at a height of 3500 feet in the Trikuta Mountains, in the state of Jammu, and each year millions of pilgrims make this journey by foot, to pay homage to the Divine Goddess. It is believed that if you ask for something with a true heart and devotion, your wish will come true. Many of these devotees come to pray to their Mata every year, unfailingly, no matter what their caste or religion.
Vaishno Devi is one of the shaktis (forms) of the Goddess Parvati. According to legend, the three main forms of Parvati are Laxmi, Kali and Saraswati. One day, the three of them combined their spiritual strength and created a beautiful young girl. She was commanded to take birth in the house of Ratankar, a good, honest and devout man, and to evolve herself spiritually until she became one with Lord Vishnu. Thus it happened that Ratankar’s wife gave birth to a girl, who grew up to be as religious, devout and learned as she was beautiful. As Vaishnavi grew older, she decided to renounce the world and to live a life of penance in the forests. During this time she came across Lord Rama, whom she recognized to be a form of Vishnu, and begged him to let her merge herself with him, so she would be encompassed by her Lord. But he felt that the time wasn’t right. He said that he would return after a few years, and if she recognized him again, he would grant her wish. However when he returned in the guise of an old man, Vaishnavi failed to recognize him. She was devastated, and Lord Rama consoled her. He set up and ashram for her at the foothills of the Trikuta Hills, and encouraged her to continue with her meditation. Thus, she took a vow of celibacy and resumed meditating with renewed devotion.
Vaishnavi’s fame spread far and wide, until it reached the ears of Gorakh Nath, a tantrik. Gorakh Nath sent his disciple, Bhairon Nath to spy on her and find out if she had attainted a high level of spirituality. However, Bhairon Nath fell in love with her, and started harassing her, by pleading with her to marry him. She refused, and journeyed up into the Trikuta Mountains to continue her penance in peace. Bhairon Nath followed her up the mountain, past Banganga. At Banganga, Mata Vaishnavi felt thirsty and shot an arrow into the ground. Water gushed out from this spot, and Mata drank some of this water and rested here. The ‘Charan Paduka’ marks the place where she rested.
Mata entered a cave at Adhkawari and stayed inside for nine months, during which time she mediated and prayed. The cave is thus symbolic of a womb and is called Garbh Joon. When Bhairon Nath finally located her, Mata raised her trident and lashed it against the opposite wall of the cave, creating a tiny opening, from which she crawled out. The chase continued up to the Holy Cave at Darbar. Mata was then forced to assume the form of Kali. She appeared before Bhairon Nath, and cut off his head. After his death he prayed to her for forgiveness, and she granted it to him, along with the boon that every devotee who comes to her shrine to seek her blessings would have to pay homage to Bhairon Nath afterwards, or his pilgrimage will remain incomplete.
However, legend goes that if anyone visits the Bhairon Nath cave first, he will be unable to do Mata’s darshan. Stories have trickled down through the ages about various devotees who tried visiting Bhairon Nath first and then continued to pay homage to Mata, but they never made it because they fell sick, met with an accident or died on the way. One devotee even reported seeing a tiger appear before him preventing his entrance to Mata’s temple.
People of all religions have prayed for Razak and Asra and sincerely believe that this prayers will give him the strength to conquer.
Razak is looking strong, a few pounds short of his normal weight,but nothing a triple won’t put right. Thanks for all the guestbook entries. They really make our day when we don’t feel so good. Those days are more than you can imagine.
Finally congratulations to the burglars who broke into our Copper Field store and stole the 500lb safe, tore the office up and took the deposit. Apparently, victimized several other stores the following week. Let’s pray that they get caught!!
Monday, May 10, 2004 8:36 PM CDT
Saturday May 1st through prayer we invited Mata Di into our home to watch over our baby Razak. She is all merciful Although we call him baby Razak…indeed he has quickly become man of great strength who will conquer this disease. We thank the 150+ friends who came to join us in prayer that Razak will be victorious in his journey back to health. We now have Mata’s presence in our home. The evening started with very emotional prayers by Punditji Rajinder Sharma and ended with Arti.
Thursday 6.00am we made our way back to TCH for Razaks surgery. Many of us had prayed not only for Razak but for Dr Nuchtern that he be given the Mata’s power to perform this very long and tedious surgery. Razak as always was in good spirits, hungry as usual … he had been fasting from midnight. We met with each member of the surgical team who promised us the they would take good care of him. I signed away the release forms praying that Razak would be strong and come out shining. We then met with Dr Nuchtern who again reassured us that he would take good care of him. The anesthesiologist then prepared a wagon to take Razak into the theater. Razak gleefully sat in the wagon. Both Asra and I followed him to the doors that lead into the theater area and then kissed him goodbye. This is when we feel the most helpless. It is our 5th time doing this and each time it gets worst. The feeling of sadness is heartbreaking, what would we do with out our beautiful Razak. The nurse pulled the wagon away, again Razak smiled gleefully.
The surgery took 8 hours along with the bone marrow aspiration. Finally at 3.00pm Dr Nuchtern appeared. Dr Nuchtern is not a man of great expression, very serious and very somber, but as he spoke to us I could hear a tone of excitement, joy and relief. He was most satisfied with the surgery. He told us with great reassurance of how satisfied he was with what he saw and what he did. Blood loss was minimal, which meant no ICU. About an hour later we went into recovery. Baby Razak was not happy. He had a nasal tube, several IV’s, an epidural and was very swollen.
The night was rough, little sleep for all as Razak itched from the pain medication. Friday he began to show his strength. We began the removal of some of the clutter, first being the nasal tube. By the evening the epidural was disconnected…. This controls his pain and day after surgery it was out.
Big brother Rishi and cousin Vikrant came over for a few hours Friday evening which always lights up Razaks face. By Saturday Razak is walking around and by Sunday he is completely disconnected from his pump. The surgical Fellow was in awe at his fast recovery. We were told at least a week.
“All Praise to Mata Di”
The Incision was from his navel all the way round to the side of his belly.
Sunday was Mothers Day and boy did we celebrate in style. Gita bought a feast that compared with that of the Ritz Carlton……a smorgasbord of breads meats, cheeses and desserts. Razak chomped down on strawberries, pastries and whatever else he could fit in his mouth. “ Jai Mata Di” We were joined by the Kumar family whose son Rohit is on his way to beating Wilms Tumor. We pray Mata will take care of him. We ate we laughed we celebrated our second victory.. yet this war continues.
Today Monday we were released from the hospital 3 days earlier because Razak with his 8 inch incision is running up and down the hospital halls like nothing has happened. We return Thursday for round 5 of chemo.
Thank you Dr. Nuchtern for taking care of our child he is a man that is truly blessed by God. We should pray for his long healthy life so he may go on taking care of our children. We humble ourselves before him.
The sadness still remains inside of me. I see how this disease devastates families taking our children and our loved ones away from us. Ironically Nancy Reagan has made a plea for the continuation of stem cell research…something the Republicans are against. As a Republican I have never felt that we should stand in the way of medical research. The key to cure is faith and science, neither alone can help us.
Again thanks for all the prayers the kind thoughts and support. Our little man may soon be a child again.
Keep signing our guest book we always share your word with Rishi and Razak.
Jai Mata Di
Friday, April 30, 2004 5:35 PM CDT
It is the night before our prayer vigil starts, I spend my whole day praying, not just now it is something I have always done. I have so much to be thankful for, my life could not be more perfect. I never dreamt that we would be so blessed. I never dreamt I would face this challenge.
Surgery will take place next thursday, and it won't be easy. Dr Nuchtern, an incredible person, feels that he should remove the calcifiaction of the shrunken tumor. The surgery may last upto 8 hrs if not longer. As much as we put our trust in God, I have also put my trust in Dr. Nuchtern. When he enters the room I feel the prescence of a good man, like Dave Thomas, somebody who will make the right decision, a man who has dedicated much of his life to the care of children. In the private sector Dr Nuchtern would be a million dollar surgeon, at Texas Children he not only saves the lives of children but creates a pathway for those of interest to follow.
So Thursday we resume our journey, a higher hurdle to jump, much more risk..but i know we will get through. Sunday Asra's second Mothers day will be spent in the hospital eating their wonderful cuisne, nurturing our child back to health.
Around us, belows and above us will be scores of other women doing the same, pray for them all that their children come back to perfect health.
Shortly after surgery we will hit round 5 of the chemo, followed by radiation, then the stem cell transplant.
We also have the MiBG test in a couple of weeks which hopefully show a reduction of the metastisis in the skull area.
Razak has now joined the ranks of terrible two's a little advanced for his age. The tatrums are in full swing, infact he insisted that Dr. Nuchtern take his socks on monday after pulling them off. It keeps us smiling and Rishi very busy, running around after him.Just don't piss him off.. he can bite !!!
Razak no longer cries when he gets his nightly shots, just lies there an waits til it's over. What a trooper. Those of us who cannot join us tommorrow, take a minute and send your best thought to our child so that he may be heatlthy again.
Friday, April 23, 2004 1:58 AM CDT
THE BIG CT!
This has been a busy week. Monday we started with a CT scan. A torturous procedure, starting with no food after midnight then the insertion of a nasal tube to get the contrast into poor Razak,sedation, a 20 min scan, recovery,and by 2.00pm Razak finally gets apple juice. Tuesday we are admitted for round 4 of chemo. The night before both Asra and I did not sleep much in anticipation of the results of the scan. Was the treatment working? Had the tumor shrunk, increased in size or as the Pundit in India predicted will not be found. We had to read the results over and over. The scan could not detect the tumor! Again Asra read the results and again no sign of tumor. Finally we could both cry with tears of joy. This still does not put us out of then woods, the treatment will continue its full course. We came out and quietly shared our joy with the nurses, that evening we celebrated in our room with coke and Pizza.
This morning and ultrasound was performed on the tumor bed and again the radiologist could not find the original tumor. A CT scan will be performed again next week; the surgeon may call off the surgery.
We have to give thanks to our mother for her relentless prayer, the Pundits in India, the Buddhist Llama and to all of you who have kept Razak in your prayers. We knew the wonder of modern medicine would give us hope, but it is the prayer that will direct the medicine to cure our child. No doctor ever gave us hope of seeing no tumor and rightfully so, but our Pundit was convinced that there would be no tumor.
Round 4 went well, a little nausea on Wednesday, but Razaks fighting spirit is always there; this morning, it was Pizza, coke and ice cream.
Wednesday night is Rishi night, so while Asra and Razak stayed in the hospital, he and I did some great male bonding. After home work we cooked Steak, fries and fried eggs, ate in the bed watched a movie and slept like stones.
Thursday we are back home with so much planning to do over the next month. June we will start the bone marrow transplant. This will be on of the hardest parts of the treatment; we will be in isolation for 21 days for each transplant.
On May 1st we will be holding an all night prayer vigil for Razak and all children who are battling this disease that God will carry them safely back into there parents arms. Prayers will begin around 7.00pm (Indian Standard time… That means late start) and continue with songs of prayer until 5.00am the next morning. All are welcome, for directions or more information please Email me.
Tragically we did lose one of our warriors:
It is with great sadness that we share with you that we
lost our little boy Jordan Alexander Luke on April 14,
2004 at 2:42 am. Jordan was at peace and in his father’s
arms. He fought a long, hard courageous battle with
Neuroblastoma Cancer which he could no longer sustain
the strength to fight.
Jordan was famous for his simple rules:
Let your children sleep in your
bed, let them make messes, have more patience,
don't take anything for granted and tell them
you love them all the time.
Jordan was from Kingwood Texas and had been fighting neuroblastoma since 2002. Please pray for Don and Cheryl Luke parents of our hero Jordan.
Please pray for Rohit Kumar a 3 year old who has relapsed with Wilms Tumor; give the parents the strength to fight the fight.
This is an amazing journey Asra and I travel, each day we discover another part of our self and create a new direction for our lives. We now know that there is not enough funding for children’s cancer, in particular Neuroblastoma, one of the deadliest of children’s cancer. We now know the true meaning of prayer, and its unlimited power. We have always known that we must always we humble, not only to those greater than us, but also to those less fortunate; now we put forth that effort even more so. This will never just be a chapter in our lives; it will always be a part of lives.
Tuesday, April , 2004 11:00PM CDT
Just completed round 3 of 5 of the chemo. We spent the week at TCH our home away from home. All went fine until Saturday when Razaks central line started to come out again, by Sunday he pulled it out. Today we were back in for surgery for a new one. 16 months old and 5 surgeries. Razak being the strong man that he is was home by the afternoon.
The chemo went well in fact our little darling even put on some weight and looks like a mini Sumo Wrestler.
Big brother Rishi spent the weekend with us at the hospital. He adds so much joy to Razaks life, the room was echoed with continuous laughter. Sunday Rishi, Granddad and I rode the light rail to the car show; Rishi decided he wanted the Saleen S1 …. $400,000.00…he is going to have to sell a lot of Hamburgers over summer!
As brave as Razak is I have to pay tribute to Rishi, he never shows his sadness, only his undying love and prayer that Razak is back to health again. He entertains his baby brother throughout his discomfort putting a smile on his face every minute they are together. Rishi’s despair only shows when he has to leave: maybe his mom will eventually will realize this and allow them that time together they need.
Asra my beautiful bride stays strong, without her I could never get through this. She is as unique a woman one could know. Her calmness and her softness is the only thing that stops that unbearable feeling of panic inside from taking over. I ask for the world and she gives it to me every day. I pray that Razak, her world will always be with her.
We stay strong taking our lives one day at a time knowing that this will eventually be something in our past that made us better people. So many people have become part of Razaks life, many he has never met, so many people who pray for him. It is the strength of this prayer that will make him well again.
The saddest part is to see my parents watch their grandchild having to endure the treatments. This is their Golden years: both their children happily married, successful, settled,four beautiful grand children. They need not be tested anymore.
Please continue your prayers for those children afflicted with this disease, that their recovery is quick and painless, that soon the cure will just be a pill at the doctor’s office. As Chris Rock says “just rub some Tussin on it”
Thanks Aunti Shanoo for coming all the way from the UK for visiting, and all the lovely gifts.
We still have a long way to go, more chemo, surgery radiation and finally two bone marrow transplants. We could not be in a better place so to all you west coast folks GOD BLESS TEXAS and TCH.
Tuesday, April , 2004 11:00PM CDT
Just completed round 3 of 5 of the chemo. We spent the week at TCH our home away from home. All went fine until Saturday when Razaks central line started to come out again, by Sunday he pulled it out. Today we were back in for surgery for a new one. 16 months old and 5 surgeries. Razak being the strong man that he is was home by the afternoon.
The chemo went well in fact our little darling even put on some weight and looks like a mini Sumo Wrestler.
Big brother Rishi spent the weekend with us at the hospital. He adds so much joy to Razaks life, the room was echoed with continuous laughter. Sunday Rishi, Granddad and I rode the light rail to the car show; Rishi decided he wanted the Saleen S1 …. $400,000.00…he is going to have to sell a lot of Hamburgers over summer!
As brave as Razak is I have to pay tribute to Rishi, he never shows his sadness, only his undying love and prayer that Razak is back to health again. He entertains his baby brother throughout his discomfort putting a smile on his face every minute they are together. Rishi’s despair only shows when he has to leave: maybe his mom will eventually will realize this and allow them that time together they need.
Asra my beautiful bride stays strong, without her I could never get through this. She is as unique a woman one could know. Her calmness and her softness is the only thing that stops that unbearable feeling of panic inside from taking over. I ask for the world and she gives it to me every day. I pray that Razak, her world will always be with her.
We stay strong taking our lives one day at a time knowing that this will eventually be something in our past that made us better people. So many people have become part of Razaks life, many he has never met, so many people who pray for him. It is the strength of this prayer that will make him well again.
The saddest part is to see my parents watch their grandchild having to endure the treatments. This is their Golden years: both their children happily married, successful, settled,four beautiful grand children. They need not be tested anymore.
Please continue your prayers for those children afflicted with this disease, that their recovery is quick and painless, that soon the cure will just be a pill at the doctor’s office. As Chris Rock says “just rub some Tussin on it”
We still have a long way to go, more chemo, surgery radiation and finally two bone marrow transplants. We could not be in a better place so to all you west coast folks GOD BLESS TEXAS and TCH.
Monday, March 15, 2004 10:47 PM CST
It has been a week out of round 2 of chemo. Razak is his usual happy child. He did well during the chemo, some appetite loss but it looks like it is comming back. This week we will harvest his stem cells for the transfusion in a few months from now.
The tough parts : he has to have shots almost everyday he cries we all cry. Then the central line dressings have to be changed almost daily....he cries we all cry. I look at my little boy always smiling immediately after each event. It seems so unfair, why did he get picked for this journey? We just pray that soon it will be over and he can be a child again.
Again we are blessed to be surrounded by so much prayer, love and kind thoughts.
Tomorrow he will have Biggie fries and nuggets and may be the next day too. He may become obese at this rate then I may have to sue myself !!!
Keep him in your prayers...Razak has so much to offer this world he needs to stick around for a while.
03/18/04
Still no harvest blood counts are .2 compared to a normal person 100. Scary stuff. The central line is still playing up, today he had to be stuck to draw blood, he just hates that. A mother of another patient looked at him today and asked what was wrong with Razak. I explained including the fact he has had 4 surgeries. She looked at Razak again and said "he looks fine God is in him, he looks fine" It is this that gives us real hope.
Wednesday, March 3, 2004 10:30 PM CST
Little Razak has become a two fisted eating machine, food in both hands. It gives us so much joy to see his overwhelming appetite and his love for food.
Today his hair has started to fall out. I knew it would happen but it scares the crap out of me. I look at my child who is healthy and big and strong, this is the reality check I guess. My son has cancer and all I have is hope that God will let him stay here for many years after I am gone.
Not a good day
Sunday, February 24, 2004 8:46 AM CST
2/23/04
Razak completed his first round of chemotherapy, today we are home again. Initially quite excited to come back “home “a sudden sadness began to sink in. We actually missed the hospital. We both realized it had become a safe haven for us. Surrounded by such caring people takes the reality of our situation away.
The chemo began last Tuesday with a drug that would bring on the nausea. The first two days were incident free, on Thursday, one of Razaks lines had moved out of position, so it was back into surgery to have it removed and a new one placed on the other side of his chest. The next day the nausea started. Throughout it all little Razak played and smiled.
He is the strongest of the strongest. Our journey continues two weeks from now when we return for the second round of chemotherapy.
From our room we could see the Marriott Medical Center, the most wonderful place we were married 7 years ago. That day our dreams were that we should always be in love and have beautiful children. Well our dreams did come true. We would not change our lives for anything that we have now. This is a challenge we have been chosen for and that we will win.
Special thanks to Aunty Sundus and Uncle Ramal for bringing midnight feasts over every night to the hospital, and of course to all our friends and family for their continued help. Thanks Wendy’s Richmond for filling the Ronald McDonald room with Wendy’s Chili and Cheeseburgers, a real treat for the patients and staff of the 9th floor.
Continue your prayers and thoughts not only for Razak but all the children affected by this terrible disease, and that maybe the cure is only a stepping stone away.
Thursday, February 12, 2004 1:29 PM CST
Both Asra and I feel troubled we have burdened you our friends with such worry, but the then what are friends for?
We wanted to give you and update on Razak. Last Friday he had a surgery to biopsy the tumor and placed a central line for his upcoming chemotherapy. The operation lasted about 3 hours. Initially the surgeon was going to try and remove the tumor completely which would have taken about 8 hours. Upon entry he decided this was not the right time so took his sample and hastily ended the procedure which provided for a faster recovery time. After chemotherapy the tumor should reduce in size considerably then it can be removed safely with out any compromise of surrounding organs. Razak was quite annoyed after he awoke, probably thinking “why is this happening to me?” He is an extremely strong child and resilient to all the discomfort imposed on him. It did take him two days to show us one of his magical smiles and get back his endless appetite. We came home last night to big brother Rishi and once again we were a family again. Seeing Rishi bought Razaks mischief back and so he spent most of the evening tearing the house apart.
Tuesday, we resume our journey again, as we begin the harsh treatment of chemo therapy. It is due to the outpouring of support from you our family and friends that gives us the strength to get through each day, whether it is by your visits, prayers, emails or calls. Our inspiration comes from Razak and all his fellow patients at TCH. We always see them smile, no tears and no fear of what they have to go through. The staff at TCH is a collection of angels whose love and care for both the children and parents is unconditional.
Asra and I ask that your kind thoughts and prayers continue, as this long journey goes on. We still smile each day and still feel blessed by what we have and pray for those less fortunate than us.
A special thanks to the management and staff at our restaurants, making sure that the customers always leave happy.
Friday, January 23, 2004 1:37 PM CST
Our story begins 18th November 2002. Asra and I had been married for an incredible 5 years, it was time to stop this honeymoon and start over with a new one a baby, Big brother Rishi wanted a boy so bad I think he actually prayed for once. Sure enough along came Razak. Big healthy strong. He grew and grew 98% on the charts. Big chunky legs huge smile and a bigger appetite.At 3 months he got a fewer, his pedatrician reccomended a urinary tract work up. He had reflux, but there was also a 4cm renal tumor looming. The hospital were optimistic, with surgery we would never see it again. In on Tuesday out by Friday. Every three months we would have a CT scan and workup , everything is fine. On 01/12/04 CT On the 1/15/04 we are told the tumor is back.Poor Razak, back to the battery of testing.With all those jabs and pokes he smiles on, in fact started walking.On 01/22/04 We are told Razak is a stage 4.
Now our journey begins of watching our child return to God or humble us by staying with us so we can make him proud someday. We are blessed with many friends,family and business partners who will pray for Razak and give him back to us so that we may enjoy him, take care of him and protect him.
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