The Prologue

Since Rohan cannot explain what is happening to him, I have decided to start this blog as way to translate to all of you how he is feeling and doing throughout his treatment for leukemia. I also want it to be a kind of record for Rohan when he is older and able to read. With that said, there may at times be postings that might not make sense to you but will make sense to him later.I hope this blog helps all of you who care about Rohan and us better understand the journey. I already know it will help me to have more clarity while I make this journey with him.

Monday, November 17, 2008

Blessings

Today we went to the hospital for chemo (Rohan's last treatment in this phase) and were there from 10:30 a.m. to about 1:30 p.m. This does not include the fact that we all had to hit the ground running when we woke up in the morning. So our hospital days pretty much leave room for little else, especially Arya.

I'm pretty sure I've mentioned that on the days Rohan has chemo my parents watch Arya. However, it's been nagging me that I haven't written about how wonderful both of our families have been during these past few months. And so I'd like to take this week's entry to acknowledge each person's contribution.

Not only do my parents watch Arya when we go to the hospital, but they try to relieve me on other days as well. My father will come over twice a week for about an hour or so. During that time he will either take Arya for a walk or play Wii with Rohan or both. Sometimes both of my parents will come over at tea time, 4 p.m., and have tea and cookies with Rohan, play hot wheels or a board game. I know that they would balk at the idea of my thanking them. For them it gives them joy on two fronts: they spend time with their only grandchildren AND help their daughter. Outside of helping with the kids, my father has taken Ravi's old Audi to the mechanic and picked it up in order to get it in selling condition. If Rohan says he wants tacos or mathia, my mother is in her kitchen ready to deliver. They always remind me of a Khalil Gibran quote: "It is well to give when asked but it is better to give unasked". (I think that's the way it goes)

Ravi's mother has also been a wonderful grandmother during these months. She visits every Sunday afternoon. She comes and plays in the yard with Rohan if it is warm enough. Or she will play indoors whatever he wants. She also brings us dinner every week and makes sure there is something non-spicy for the kids. She lives further away but has also come to babysit when we needed her. One morning we had a very early appointment for Rohan so she came the night before.

In addition to my parents and Ravi's mom, Rohan is fortunate to have uncles who love him. Rocky comes every Sunday and plays with Rohan, rough houses with him, talks to him. My brother, Pratik, will come to play or will show up with a box of Rice Krispies, a bag of marshmallows and will make Rice Krispie treats with Rohan. I have noticed that Rohan enjoys the process of making them with my brother more than he actually likes eating the Rice Krispie treats!

My last unsung hero (for now) is my sister-in-law Suja. I thank her all the time because she has on occasion called me up to let me know that she is free on such and such a night to babysit in case Ravi and I want to go see a movie or something.

If children reflect the kind of care they get, then ours are on their way to being full of light and kindness!!

Monday, November 10, 2008

Euphoria & Misery

First things first. Last week I ended my entry with some anxiety regarding the election outcome. Today I have to begin by saying it truly seems we are on the dawn of a new era in this country! The night before the election I fully realized the impact of an Obama presidency...at least for my children. A black man being president is something they will always know and within that is the example of a true meritocracy. The world they know will seem a bit more tolerant. "Yes we can" will have a truer resonance for them.

Okay now that I've gotten that out, back to Rohan. He had a spinal tap last week which he hadn't had for a while. It went fine. One of the medications in the cocktail causes his appetite to be sppressed. As a result, he has done a complete 180 from six weeks ago. Whereas in the beginning he couldn't eat enough food quickly enough, he now eats almost nothing. For example, up until 6 p.m. today he had only had a glass of milk, a granola bar and some crackers & cheese. No real breakfast or lunch. And I have been offering him anything, everything! Needless tosay this is worrisome. One of the other medications he takes causes his eyelids to droop which makes me think he is tired all of the time. Rohan's eyes, which are normally so full of sparkle and life, look lifeless and ever so small.

I cannot stress how difficult it has become for both of us to stay home all day. He is easily agitated to the point of tantrums; he is so bored that he needs to know what he is going to do next while he is still doing the previous activity; and today he asked me on and off for an hour about who could come over. All of this in turn makes me angry because I have to parent through the tantrums; exhausted because I need to constantly find something for him to do; and generally miserable because I think I am probably doing it all wrong. And I haven't even mentioned Arya...a 14 month old has her needs as well. The best way I can describe my side of it is it would be like sharing an office with your boss. Not a second to do anything for yourself!

The past few days I have been struggling with the issue of discipline. Do I just drop all of the rules and limitations because he is sick ( a course the grandparents would advocate), or do I enforce them with an allowance for the extraordinary circumstances?I have been following the latter course because when Rohan's life is back to normal, I don't want him to be an out of control child who doesn't know the limits. But I ask myself, is it fair to punish a kid who is going through so much already? Walking the tightrope is a tough gig, and I feel myself losing balance.

Monday, November 3, 2008

Celebrations

Last week was Diwaali. It was the first year that Rohan realized something was going on. It's difficult since the day just isn't as big here as it would be if we were in India. For Rohan, it was exciting because we did a pooja, and he had a role to play in it. He also got get dressed in Indian clothes which he loves to do. So overall Diwaali was a hit.


Diwaali was followed up this past weekend with Halloween. I am happy to say that Rohan had a great one. He's not in school so didn't get to walk in a parade with his costume on, but he did go trick-or-treat with his friends Griffin and Luke. We do this every year so it was nice to be able to do so this year as well. Personally, I was happy and relieved that he was able to keep up with the other kids. I was afraid all of the runnning from house to house would tire him out. But I guess candy is a miraculous incentive.


On both occasions, I have to say my kids looked great so I can't help providing this link for all of you: http://picasaweb.google.com/rupa.motwani/DiwaaliHalloween#

Ravi and I even went to a Halloween party. We were X-Men characters. And so my friends (sorry, I in no way mean to channel John McCain here), it has been quite pleasant this past week except for the fact that I am one of those anxiety ridden Democrats who, despite the positive polls, am holding my breath. Hopefully this week will bring long awaited pleasant news as well.