Wednesday, March 26, 2008

We are home...the end of the beginning

It's a weird feeling. Almost void. The brain is refusing to function. There are so many things to take care of, soo many open issues to resolve.

Shivam's number showed slight improvement from the test conducted in the afternoon and we finally got the ok to go home. The medication list is huge, scary and unreadable.

Here are some photos of him all ready to go:

We reached home around 5:30 PM. Shivam was very tired and was not able to stand on his own. It is such a heart breaking site to see my full of energy bubbly son so tired and sad. Yes, his eyes are sad. He just stares in void space and sometimes looks at you with questioning eyes. It hurts. But I cannot cry in front of him. I have to be strong and smiling when I am around him.

Meera, my 9 month old daughter lit up when she saw him. But God was not willing to let bro and sis be together. Meera is having cough and cold; extremely dangerous for Shivam with no WBC to fight infection. We had to drag them away. Also, since Shivam is not leaving me for a moment, I could not even hold Meera. My heart is like a seive right now, pain flowing freely.

The day ended with Shivam having nausea and vomiting everything he ate alongwith the chemotherapy medicine. I paniked and called the hospital. One thing I have to say about Oncology dept. of Children's hospital. They are true to their word. Within minutes Dr. Fong, the fello doctor on call, called me and after hearing what happened, asked me to give him the anti-vomiting drug, wait 1/2 hour and then give the chemotherapy drug again.

This time I gave the dexamethasone with vanilla ice-cream. Good so far. Shivam has gone to sleep now. On his own bed.

I am aching to hold Meera in my arms, hug her, kiss her. But I cannot do that for Shivam's sake. I don't know how I wil bear the next 3 and a half years. Each day, each hour, each minute, each moment seems an eternity.

May God never give this much pain to even my worst enemy.


Mette said...

Nikhil and Urmila - your last sentence resonated with me so much. I agree: the pain is too much for anyone to go through, even your worst enemy. But, it gets more manageable. In a few weeks you will be surprised at yourselves - you will know all his medications from memory - the dose and when it was last given. You will start telling the nurses and doctors about the best way to handle a certain procedure or give a medicine. You will speak a new language and know how to live in limbo between home and the hospital. Another parent told me something helpful, so I'll pass it on: "The doctors and nurses are experts on treating cancer. But you are the expert on your son. Your job is to be his advocate and help the doctors and nurses better understand all the uniqueness of Shivam." Another thing I have learned is that God (however you conceive of God) is everywhere on this journey. There will be moments of mercy and grace, and peace. It will come to you both, too. From Mette and Zoe Earlywine

sudeb said...

hey nikhil
you should let your heart cry...this way you would feel at peace. i can understand, its no mean task resisting yourself from hugging your child.
pass on our love to shivam
sudeb and ruchi

sudeb said...

seeing shivam, it reminds me of nikhil in our old school days. he seems to be a copy of junior nikhil. He would grow up to more naughtier than nikhil, i know for sure.