My sincerest apologies to my readers. I have not updated the blog in three weeks, and some of you have let me know. That's good. Sometimes I need reminding that what I'm doing matters.
The past three weeks have been remarkably good. As we kept waiting for the other shoe to drop during this phase of treatment in which the doctors told us to expect blood transfusions and possibly a hospital stay, Rohan was fine. He didn't get sick and even though we went to the hospital every three or four days to get blood counts, he has not needed a tranfusion of blood or platelets. There were a few days where the medication made him nauseous, but that was solved by Zofran. It could be said that the wonder of modern medicine is its self-perpetutating nature. But we couldn't get by without it.
Today was officially going to start the next and last and longest phase of Rohan's treatment - Long Term Maintenance. This phase will last for the next three years. However, Rohan will have to go to the hospital for chemo every month as opposed to every week. During this time he would also be able to return to more normal activities such as playing with other children; going to school; shopping at Target; eating in restaurants. Unfortunately, it was not to be today. His counts were too low to start this next phase. Nothing to be alrmed about...we just have to wait another week. A week during which, due to his extremely low counts, we will pretty much be home every day, all day. Even though things have been moving along for Rohan these past six months, it still feels like we have taken up residence in Dr. Seuss's "The Waiting Place...for people just waiting. Waiting for a train to go or a bus to come, or a plane to go or the mail to come, or the rain to go, or the phone to ring, ot the snow to snow or waiting around for a Yes or No or waiting for their hair to grow. Everyone is just waiting."
I can't believe that six months have passed. They have been rough and strenuous and life-altering in ways which I'm sure have not all become apparent yet. The other day I was in a local cafe that Rohan and I used to frequent before he got sick. The teenage waiter asked, "How is Rohan doing"? I was surprised that he knew his name. After I gave a brief reply, he said to me, "He just has that amazing smile. That's what I remember about him." This comment did not surprise me. Rohan has always had a smile that lights up his face, and it is almost ALWAYS on his face. These past six months have been no exception. I like to think that part of the reason for that is Ravi and I have done our job as parents - we have been the shock absorbers that have allowed Rohan to have as smooth a ride as possible. But I know my son, and I know that the other reason he has been able to smile is his indomitable spirit, and that is something he brought with him when he came to our family.
I end with thanks for all of your caring and prayers and with hope that next week we can exhale a little bit.
Wednesday, January 28, 2009
Tuesday, January 6, 2009
We Waited For It
So it finally happened. And on Christmas day too. On the night of Christmas Eve Rohan went to sleep with a full head of hair and the night of Christmas day he went to sleep with almost no hair! We had been told that the medications would cause his hair to fall out - not that it was necessary. The head with a few remaining wisps of hair is the iconic image of the disease. Nonetheless, nobody had mentioned that it could ALL fall out within the span of 24 hours or so.
So how did he handle it? Christmas morning his back kept itching because of all the hair on his shirt. I took that to tell him - "Rohan let's change your shirt. It's itching because your hair is all over your shirt." "Not it's not," he says. We went upstairs and I showed him his shirt and pillow. Then I took a deep breath and said, "Your hair's falling out but it's not big deal. Hair grows back." He voiced his concern by asking, "What if it doesn't grow back?" I assured him it would, and we went downstairs to open presents. I guess it was a small blessing that it was Christmas day because there was so much to distract him.
Later in the day I mentioned how he would be like Caillou, his favorite cartoon character who happens to be bald. "Yeah! I'm gonna be like Caillou," he yelled with excitement. I was happy he was taking it so well. There was one more moment of doubt on his part. In the evening when he was watching with Caillou with my sister he said, "You know masi, Caillou's hair never grows back." What a time for him to become logical! Anyway, she reassured him that his hair would grow back, and we have not heard anything about it since. AMAZING...to lose all your hair in one day and take it in stride. We could all learn something from these kids.
Especially me. Even though we had been expecting his hair to fall out, I was quietly inconsolable. I put up a brave front for Rohan, but when I was alone I could not stop crying. I told myself it was silly, that it was just hair, that I had known this would happen since the first day, that I had seen other kids in the hospital go through it. None of it worked. The tears woud not stop flowing. As I washed the sheets and pillowcases and picked up a few clumps of hair from the carpet, I cried and cried. For what exactly or why I can't articulate.
The next day we were all fine and back on track.
So how did he handle it? Christmas morning his back kept itching because of all the hair on his shirt. I took that to tell him - "Rohan let's change your shirt. It's itching because your hair is all over your shirt." "Not it's not," he says. We went upstairs and I showed him his shirt and pillow. Then I took a deep breath and said, "Your hair's falling out but it's not big deal. Hair grows back." He voiced his concern by asking, "What if it doesn't grow back?" I assured him it would, and we went downstairs to open presents. I guess it was a small blessing that it was Christmas day because there was so much to distract him.
Later in the day I mentioned how he would be like Caillou, his favorite cartoon character who happens to be bald. "Yeah! I'm gonna be like Caillou," he yelled with excitement. I was happy he was taking it so well. There was one more moment of doubt on his part. In the evening when he was watching with Caillou with my sister he said, "You know masi, Caillou's hair never grows back." What a time for him to become logical! Anyway, she reassured him that his hair would grow back, and we have not heard anything about it since. AMAZING...to lose all your hair in one day and take it in stride. We could all learn something from these kids.
Especially me. Even though we had been expecting his hair to fall out, I was quietly inconsolable. I put up a brave front for Rohan, but when I was alone I could not stop crying. I told myself it was silly, that it was just hair, that I had known this would happen since the first day, that I had seen other kids in the hospital go through it. None of it worked. The tears woud not stop flowing. As I washed the sheets and pillowcases and picked up a few clumps of hair from the carpet, I cried and cried. For what exactly or why I can't articulate.
The next day we were all fine and back on track.
Monday, December 22, 2008
Blink to Happily Ever After...
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!
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!
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.
Subscribe to:
Posts (Atom)
Posts
