Hi everyone. I know I missed a posting last week, but I was just too tired.
It's week three of Delayed Intensification and week two of the Steroids! His appetite is not as wild as it was in that first month, but it is...let's say hearty. This morning after a bowl of cereal, he asked if he could pakoras and bread with ketchup. Keep in mind that it was 8:20 in the morning. While his lunch is being made he says, "C'mon can I just have something as a snack while I wait?" And that snack is rice, dal and spinach. However, lest it seem that I am complaining, I must say that I am amused and a bit relieved. He was hardly eating before the steroids.
Otherwise he is doing okay so far. It seems that we are waiting for the other shoe to drop, but maybe, hopefully, this is it. Last week his counts were still high so we let him have a playdate with his friend Griffin on Saturday.
A few days ago, Rohan said to me, "Mommy, when my birthday comes I'm gonna be five, then the next one I'll be six, and then I'm just gonna be eight because my teeth will fall out when I'm seven so I just want to be eight!" As convoluted as this 4 year old logic was, it got me thinking. How amazing is it that he is going through this difficult period where every week he gets poked and prodded and more times than not, knocked out from anasthesia, and he is worrying about his teeth falling out. His resilience and wealth of spirit are awe-inspiring at times. As for his theory on life. . . . If only we were allowed to skip over the bad parts and jump to the happily ever after - this family would be healthy and on a beach in St. Barts for the holidays!
Have a wonderful holiday!
Monday, December 22, 2008
Tuesday, December 9, 2008
So Far, So Good
Well we are a week into this new phase and all seems okay so far. He is on 1.5x the dosage of steroids he was on in August, yet there have not been significant alterations to his behavior. His food intake has increased but still, not the way it was in the beginning. Rohan is back to eating lots of spicy food. That means nachos with hot salsa, spicy Indian snacks, etc.
As for the decision with which we were struggling last week, we told the doctor, and his advice was sage. He told us that once we make the decision to "not look in the rear view mirror or we will crash". So we hope and pray for the best.
We are off to the hospital tomorrow for what I am sure will be a loong day. It's a short entry this week, but sometimes not having anything to report is the best report of all!
As for the decision with which we were struggling last week, we told the doctor, and his advice was sage. He told us that once we make the decision to "not look in the rear view mirror or we will crash". So we hope and pray for the best.
We are off to the hospital tomorrow for what I am sure will be a loong day. It's a short entry this week, but sometimes not having anything to report is the best report of all!
Monday, December 1, 2008
Pins & Needles
We are on the cusp of a new treatment phase for Rohan - Delayed Intensification. From what we've heard so far, it is supposed to be exactly that, intense. That's why I was glad that we were able to have the long Thanksgiving weekend. We celebrated at home with just the four of us and a visit from my sister. But since his counts were pretty good, he was able to have his friend Robert visit for a playdate as well. I think we keep him busy enough but he still really misses playing with kids his own age.
To shift gears, you all know the old platitude that God doesn't give you anything that you are not equipped to handle. When it comes to one of my children, I wholly believe that whatever came my way, I would figure it out for their sake. However, that doesn't mean that it's always easy or even that I want to be the one handling it. Recently, Ravi and I have been faced with a decision regarding one of the medications that will be administered in this upcoming phase. Without getting into all of the details, let me just say it feels like we are steering our ship between Scylla and Charybdis. Either choice is less than ideal and fraught with possible pitfalls. After much agony and research and talking and a few tears, we made a choice. We hope it's the right one. All I want is for my son to have a normal chilhood and a healthy and happy life. So when I think of the awe-some responsibility that comes with a child, especially one that is sick and too young to understand, I sometimes doubt that I have within me all thatI need to get him through it. I am simply not qualified to make these choices, and yet. . . . I wouldn't let anyone else make them for me.
As I write this my heart is heavy and my eyes are moist. I know we do the best we can, but with our children, more than with anything else, we worry that our best is not good enough.
To shift gears, you all know the old platitude that God doesn't give you anything that you are not equipped to handle. When it comes to one of my children, I wholly believe that whatever came my way, I would figure it out for their sake. However, that doesn't mean that it's always easy or even that I want to be the one handling it. Recently, Ravi and I have been faced with a decision regarding one of the medications that will be administered in this upcoming phase. Without getting into all of the details, let me just say it feels like we are steering our ship between Scylla and Charybdis. Either choice is less than ideal and fraught with possible pitfalls. After much agony and research and talking and a few tears, we made a choice. We hope it's the right one. All I want is for my son to have a normal chilhood and a healthy and happy life. So when I think of the awe-some responsibility that comes with a child, especially one that is sick and too young to understand, I sometimes doubt that I have within me all thatI need to get him through it. I am simply not qualified to make these choices, and yet. . . . I wouldn't let anyone else make them for me.
As I write this my heart is heavy and my eyes are moist. I know we do the best we can, but with our children, more than with anything else, we worry that our best is not good enough.
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!!
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.
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.
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.
Monday, October 27, 2008
Quick Update
I realize it's been awhile since I've written, and I apologize to those of you who check the blog regularly. We have had some technical difficulties with our laptop. To make things easier, I am going to try and do a regular post every Monday night.
This phase of chemo that Rohan is in, interim maintenance, has been much easier than the previous two. He has lost the puffiness and bloating from the steroids and looks more like himself. He is also back to being energetic and happy. Now as you can imagine this makes me and Ravi feel better; however, it does have a drawback. Since he feels better, Rohan wants to do more and go places and gets bored just being in the house. But the thing he doesn't necessarily understand is that he is not better and still has restrictions. As the weather gets cooler, staying home all day is becoming more trying for all of us.
Halloween is on Friday and he will be able to go trick-or treat...hurrah!! Rohan is going to be a fireman and suggested that "Arya can be the fire dog," i.e dalmatian. Since Arya has no real preference, she is going to be a dalmatian puppy. I am excited and grateful because this will be such a normal activity for him.
His night terrors have subsided. Thank God! He doesn't like it if Ravi or I go out at night, and he has to go to bed without both or one of us. I think he just wants everyone at home. The irony is, this is the most time we have all spent together - just us. We're pretty much home every weekend , and Ravi is home from work at least once a week. I guess there is some grace in that.
This phase of chemo that Rohan is in, interim maintenance, has been much easier than the previous two. He has lost the puffiness and bloating from the steroids and looks more like himself. He is also back to being energetic and happy. Now as you can imagine this makes me and Ravi feel better; however, it does have a drawback. Since he feels better, Rohan wants to do more and go places and gets bored just being in the house. But the thing he doesn't necessarily understand is that he is not better and still has restrictions. As the weather gets cooler, staying home all day is becoming more trying for all of us.
Halloween is on Friday and he will be able to go trick-or treat...hurrah!! Rohan is going to be a fireman and suggested that "Arya can be the fire dog," i.e dalmatian. Since Arya has no real preference, she is going to be a dalmatian puppy. I am excited and grateful because this will be such a normal activity for him.
His night terrors have subsided. Thank God! He doesn't like it if Ravi or I go out at night, and he has to go to bed without both or one of us. I think he just wants everyone at home. The irony is, this is the most time we have all spent together - just us. We're pretty much home every weekend , and Ravi is home from work at least once a week. I guess there is some grace in that.
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