Redmond, March 28th, 2008: It was a long Friday. He had surgical procedures planned for today @ 1 PM so he had a restriction on no food starting at 7 AM. We woke him at 6:30 AM and fed him milk and cookies. He again went back to sleep (and so did I). We got up with a start at 9 AM and quickly got dressed and left for hospital. Since he was allowed to have clear liquids till 11 AM, we gave him an apple juice bottle. He almost finished it.
We reached Children's around 10:30 AM. He had to get a tube inserted into his port and that took a long time. He faught hard, cried a lot and mostly it was out of fear of what's happening. The doctor had given us a numbing cream which we had already applied to the port site. Hopefully, next time, he will cry less as he will know what is going to happen.
We met our nurse practitioner, Tina Kolman around 12 noon. She is one of the most wonderful nurse I have met. She was very patient, very methodical and spent over an hour with us explaining the day and the coming month. She also explained in detail the medications Shivam is taking and answered all our questions. I am so glad we are in Seattle area to visit Children's hospital. We also met Laura Eisenberg, our other nurse practitioner and she was a pleasure to meet with. Children's hospital is one of the best places you can get the treatment.
He was, by this time, very hungry, and asked for Pizza. Himself. I don't know how he remembered that. But then he kept singing he wants a pizza. I promised him once he comes back from the "sleeping room", I will give him. The wait for the surgery was a little longer than expected and we spent our time watching Thomas the train video in his exam room.
We were finally taken to the surgery (aka sleeping room) and while Urmila took him in her lap for the anesthesia, I ran to the cafe to get pizza, soup and juice for him. The spinal tap for chemotherapy and bone marrow draw were completed under 7 minutes and by the time I was back, he was awake and hungry. Crazily hungry. He attacked the pizza in the operation room itself. We then gently took him to his room where he finished his complete pizza slice and the soup. He did not like ketchup!!! I guess the medicines are changing his taste buds.
Now was the time for his chemotherapy drugs via the port. He was first given a very strong dose of Zophran for nausea and vomiting before any chemotherapy drugs. He was then given Vincristine and daunorubicin. This followed by a dose of oxycodone for pain.
He fell asleep in the car on the way back home. His food and water intake is very less and the doctors are concerned. They told us that if his trend of weight loss continues, he will have to have a tube put in his nose for feeding the essentials. That would not be fun. But it's hard to feed a child who is saying no. Hopefully, his appetite will increase soon.
His nani (granny) is now making idli's for him. Yummy.
Though it was a long hard day, though it was cloudy, snowing and glowing, our spirits are UP. The amount of support ond help and encouragement mails and calls I am getting are unbelievable. There is SO MUCH GOODNESS in this world. Thank you, thank you and thank you.
We will fight this out. I will help the world find a 100% cure for this disease. Help me, stand with me to fight this monster.
Friday, March 28, 2008
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4 comments:
It shall all be fine Nikhil and Urmila. Hang in there. We are all with you.
Today, whole day, I was thinking about you guys. In the evening, I went for my Buddhism meeting, while chanting there my mind was recalling Shivam again and again….. as soon as we were done with our chanting, I could not stop myself to talk about Shivam’s situation with my Buddhism group, and asked them to keep Shivam in their prayers for his faster recovery and good future. All the members are praying for Shivam’s health and strength to you guys..
Nikhil-Urmila, you guys are one of the best people I have met in my life so far… There are times when God make His people go through tests. You will get through this test soon.
Jyotika
hang in there urmila and nikhil....our love to shivam
sudeb
Dear Urmila Nikhil
We are with you.
We used to give daddy an anti dose for vomitting and fever before his medicines. The patient can either vomit or have diarhea or constipation. Constipation because the recommended diet was full of proteins. So we gave him papiah. Oedema (water retention in the feet) was also a problem, because his kidneys got effected.
Lethargy sets in during the course.
Make the passage of time interesting for Shivam. Maybe he would like to hear music and stories. Toys need more energy to play with. TV not a good idea. Gently stroke him consistently, it would keep him reassured. Also help him not loose his self esteem. Let him do small things for himself.
Please take turns to rest else you will not be able to give him your 100% as a team. Eat a good diet yourself. Shivam needs you to look after yourself. Build your own will power to help build his.
Love You
manjushree
Nikhil, Urmila, Meera and SHIVAM
This is the most crucial moment in our lives and to say the least; absolutely heart rending for the entire family. One has lived a grown up's struggle against cancer and so can fully comprehend the mountainous brave fight of a little baby.
Shivam, you came and touched my feet for blessings and stole my heart. From that very instance I carried you in my prayers and hopes. Your beeming face is so innocent and yet so all knowing. You are courage personified and are your family's strenght and aspiration.
Its testing times as just that some nights are longer but always followed by a new morn and a brilliant rainbow after a shower. You are a winner and have everyone's blessings. When in future, looking back you will be surprised at yourself how you achieved what most growns also would crumble under. I am so proud to belong to you. I see the four of you share many new moons and glorious suns together in future.
Am following the saga. Remember I am just a call away and LOVE YOU.
manjushree
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