Well folks, we had a much needed celebration this past weekend. It was Rohan's 5th birthday, and we decided that combined with making it to Long Term Maintenance, it required a bit more than your run of the mill kid's birthday party.
To start, Rohan had decided he wanted to have a bowling party. So I drove around a few weeks ago trying to find a bowling alley that wasn't icky or next to a strip bar or both. Finally found one. Rohan and fourteen of his friends bowled for an hour before sitting down to pizza and ice-cream cake.
Afterwards, we had invited everyone back to the house for drinks and food. In order to ensure that the kids as well as the parents had a nice time, we hired some party entertainers for the children. As a result, the adults were able to be just that for a few hours. It was fun and exhausting and exactly what this family needed.
I still can't believe he's five - a toddler no more but a little boy. Here are the pictures.
Tuesday, March 24, 2009
Monday, February 16, 2009
The True Side Effects
Almost two weeks into Long Term Maintenance (LTM), we are still adjusting to being able to go out into the world and do the things that until seven months ago we had taken for granted. You all know - those everyday errands and outings that give the rhythm to your week. For example, going to the supermarket is something we were not really able to do with Rohan. That meant that if I didn't have what I needed/wanted to make dinner, I would have to come up with something else to eat. It was frustrating to say the least, but for the last 12 days we've been faced with a new kind of frustration.
Rohan is experiencing a side-effect not from any medication but from having been confined for so long. Two days last week the first thing he said to me in the morning was, "Let's just not go anywhere today. Let's stay home all day". The rhythm of his day involves waking up and eating cereal while watching t.v., playing Wii Sports or Super Mario with me, bathing, dressing, eating lunch, napping, snacking, puzzles, board games, a visit from Ba & Dada, helping make dinner, And he doesn't want to dance to a different song. As a result, there have been many tantrums in the last week - "I don't want to go to get coffee"; "I can't keep leaving the house everyday"; "I just don't want to go to Trader Joe's". These are battles I fight in order to transition back to life as he knew it.
To make the family dynamics even more difficult, Rohan has separation anxiety. He doesn't want me and/or Ravi to go out, and when we do, he throws a tantrum that involves screaming, crying, rolling around on the floor and yelling "I don't waaaant you to go aaanywheeerre". This can and has gone on for up to 30 minutes! Again, we try not to give in with the hope that the more he is away from us, the easier it will become.
My poor bugger. The hospital staff has been so informative about side effects from the medications, but they have been completely remiss on the soft stuff. I'm not even blaming them. I understand that each child must process and react to the trauma in different ways, but a guide book would be nice. The real side effects are the emotional scars that this disease has left. Until they heal for Rohan, we are doing the best we can.
Rohan is experiencing a side-effect not from any medication but from having been confined for so long. Two days last week the first thing he said to me in the morning was, "Let's just not go anywhere today. Let's stay home all day". The rhythm of his day involves waking up and eating cereal while watching t.v., playing Wii Sports or Super Mario with me, bathing, dressing, eating lunch, napping, snacking, puzzles, board games, a visit from Ba & Dada, helping make dinner, And he doesn't want to dance to a different song. As a result, there have been many tantrums in the last week - "I don't want to go to get coffee"; "I can't keep leaving the house everyday"; "I just don't want to go to Trader Joe's". These are battles I fight in order to transition back to life as he knew it.
To make the family dynamics even more difficult, Rohan has separation anxiety. He doesn't want me and/or Ravi to go out, and when we do, he throws a tantrum that involves screaming, crying, rolling around on the floor and yelling "I don't waaaant you to go aaanywheeerre". This can and has gone on for up to 30 minutes! Again, we try not to give in with the hope that the more he is away from us, the easier it will become.
My poor bugger. The hospital staff has been so informative about side effects from the medications, but they have been completely remiss on the soft stuff. I'm not even blaming them. I understand that each child must process and react to the trauma in different ways, but a guide book would be nice. The real side effects are the emotional scars that this disease has left. Until they heal for Rohan, we are doing the best we can.
Monday, February 9, 2009
Raining Confetti
Hip, Hip... Hurray!!!! Last Wednesday we went to the hospital, as we have every Wednesday for the last six months, and Rohan's counts were good enough to begin Long Term Maintenance. For this visit it didn't mean anything particularly different - he was put under while they gave him a spinal tap; he had additional medication given to him through his port; he got to pick a toy out of the treasure chest. However, when the nurse took us through the treatment schedule for this phase, she told we were not due to be back in the hospital until March 3! WHAT?!? Would we not be able to rattle off his blood counts- hemoglobin, white blood cells, platelets, ANC- on a weekly basis? This made me uncomfortable, and so she told me I could bring him in for bloodwork in two weeks. I am sure I am not the first parent to have symptoms of withdrawal.
Here I would like to pause for a beat, a breath, a moment.....................................................
Rohan made it. We made it. Yes it's still another three years, but these six months were critical, difficult and restrictive and let's not forget the emotional upheaval. When we left the hospital, I felt like we should have been transported to something akin to an auto dealership commercial: confetti and balloons falling from the sky; a big band playing in the background; and a loud, obnoxious sounding guy yelling into a microphone, "CONGRATULATIONS!! You have made it back from the other side of the looking glass. Your life can be like it used to be. Rohan, go play with your friends, go swimming, go play tennis. Arya go meet other toddlers. Mom and Dad, the door to the Waiting Place is open, so step through"! Hell, it seemed there should have been a full blown ticker tape parade!
Even though we are not at the end of this long road, we have passed a significant milestone and want to spend at least a little time being appreciative of that.
Here I would like to pause for a beat, a breath, a moment.....................................................
Rohan made it. We made it. Yes it's still another three years, but these six months were critical, difficult and restrictive and let's not forget the emotional upheaval. When we left the hospital, I felt like we should have been transported to something akin to an auto dealership commercial: confetti and balloons falling from the sky; a big band playing in the background; and a loud, obnoxious sounding guy yelling into a microphone, "CONGRATULATIONS!! You have made it back from the other side of the looking glass. Your life can be like it used to be. Rohan, go play with your friends, go swimming, go play tennis. Arya go meet other toddlers. Mom and Dad, the door to the Waiting Place is open, so step through"! Hell, it seemed there should have been a full blown ticker tape parade!
Even though we are not at the end of this long road, we have passed a significant milestone and want to spend at least a little time being appreciative of that.
Wednesday, January 28, 2009
The Waiting Place
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.
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.
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!
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