It's a Party!

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.

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.

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.

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.

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.

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!

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!

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.

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!!

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.

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.

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.

Milton Failed

Yesterday we began the third phase of Rohan's treatment. It will last about 2 months. This phase on some level provides with some room to breathe because (1) there are no medications to be administered at home and (2) he only has one or two spinal taps for which he has to be anesthetized. So we hope it gives him some respite from the upheaval. And as you will read, he has been experiencing some emotional lows.

Both times that Rohan was admitted into the hospital, we thought it was the hard part. And it was immensely difficult. Being at home, in one's own space, is a salve in itself. Lately, however, being at home has become increasingly difficult. It seems that our little boy is acting out his trauma by having screaming tantrums while he rolls around on the floor. They usually happen at night and there is no specific goal to the entire 45 - 60 minute ordeal. He begins in a slow whimper and works his way into a crescendo of piercing screams. Nothing can soothe him in these moments. He does not want us to ask him what's wrong, what he wants, if anything hurts, etc. He doesn't even want us to touch him and will move away if we try. This scenario has played out for the better part of an hour for the past few days. And then as quickly as it began, it vaporizes. And Rohan is back to himself.

Since he is not in any physical pain and is not crying because he wants his way, we assume that it is trauma. Even then, it is difficult, when it is midnight, to not get sucked into the vortex of the tantrum. I have not always been able to remain calm, and neither, surprisingly, has Ravi. We're trying some methods that the social worker at the hospital recommended. We were also glad to hear that Rohan was not the first child to act out in this way. She said that it will most likely pass.
His entire life has been truned upside-down, and he doesn't have the nuance of language to express his thoughts and feelings. The first two times I cried after it was over. How much angst and fear must he be experiencing for such a thing to happen? On top of all of the hospital visits and spinal taps and IVs and medications, does he need this?

Throughout this entire experience, I have been mulling over Milton's famous line "Justify the ways of God to man." Milton wrote an epic poem to try and do just that. But living through this ordeal, I'd say he failed because his goal was like the horizon...unreachable. I cannot imagine anything that would justify my son's suffering. There is nothing that would come close to even being acceptable as an answer to the question, "Why is this happening to him?" And lately, I've concluded that not having an answer is better. Because to acutally be able to justify this would say more about this world than I care to know.

We're Okay...I Guess

Well it's been a while since I wrote. Since we've come back home from the hospital, Rohan has been doing well. This second phase of treatment, Consolidation, is a bit easier. There are not as many medications at home and there are two weeks that we don't have to go to the hospital for chemo. But to ensure that we stay on our toes, Rohan's platelet count is quite high. Right now, there is nothing to do but monitor it. If it does get too high, though, there is the risk of blood clots. So if the counts get too high, they will prescribe that he take aspirin daily. Hopefully, this week's bloodwork will show that his platelets have gone down. It's amazing how many things the doctors keep in mind for each patient.

Otherwise, Rohan is doing fine. And so we are too. He is back to his cheerful and considerate self, and I'm glad to know that his despondent behavior was a temporary effect of the medication. We've been taking walks around the neigborhood and he is able to run quite a bit. I guess his energy is back up a bit. He does keep wondering why he has to continue taking medicine when he doesn't feel sick. We just keep reinforcing the message that the factory in his body that makes blood is broken in some places, and the medicine is fixing it. He doesn't really understand. But then neither do I...I don't understand why this had to happen to my vibrant boy.

Thanks to all of you for caring to read.

It's a Bumpy Ride

Luckily Rohan’s first month of treatment was unremarkable in that he did not get sick and need to be hospitalized. Unfortunately, that changed last week. On Thursday, he had a minor surgery to insert a more permanent port through which the doctors could draw blood and administer medication. The surgery went well, and we came home after having been at the hospital from six a.m. to 11:30 a.m. Two hours later we discover that Rohan has a fever. The doctor tells us we need to bring him to the hospital- so back we go again. And we end up having to stay there for at least five nights! His fever hovered between 102 and 104 for two days. The cause? A virus- most likely. “He has to be fever free for 24 hours before he can be released,” said the doctor. So we waited and prayed and entertained him and waited and prayed and entertained him.

We will most likely be home tomorrow, and Rohan will be better. Ravi and I will now be ever more vigilant in trying to minimize his exposure to any germs. It is a fine line between reasonable precaution and paranoid seclusion. I don’t think anyone would blame us right now if we lean toward the latter. It’s tough though. To tell your little boy that he can’t play with his friends or come to the grocery store with you or go out to eat or go to school is wrenching in its own way – even if you know it’s in his best interest.

Well folks, the journey continues…with all of its requisite ups and downs.

"Is solace anywhere more comforting than in the arms of a sister?"

This is my second post today, but I have been waiting to say this for some time now.

I'd like to introduce you all to my sister - Amisha. Now I know most of you know her, but I want you to see her the way we have. If you were with us this past month, you would have seen Amisha the Masi and Amisha the Sister (to both me and Ravi) and Amisha the Friend. All of these titles translate to Amisha -- the one who has helped bear the burden of our heartache like no one else.

She was basically living with us at the hospital and the first 10 days or so after we came home. Amisha is the only one besides me and Ravi that Rohan responds to all of the time. More importantly, he talks to her in a way that is unique and allows him to say things that he doesn't even say to me or Ravi. I think it's because she has let him know that she is here for him and him alone. He knows because she wakes up early to make banana pancakes with him. He knows it when she goes and buys supplies to do an art project together. Or because she simply sits and watches tv and eats ice-cream with him. Simply put, she allows him to be whoever he is in that moment. That essentially is what resonates with him.

What's amazing is that she has made me feel like she is here just for me. She's cried with me and encouraged me. Amisha has talked to people for me when I just couldn't. She has helped me clean up after the endless round of meals, fold laundry and gone shopping. It doesn't end there. Amisha has made sure I got out and relaxed a bit and kept my sanity. In short, she has been the pillar behind me ensuring that I didn't fall. Through this I have learned that there is almost no situation in which the presence of my sister does not offer some comfort to me.

She has talked to Ravi and kept him distracted with myriad topics of conversation. And she even managed to contact a friend of his to suggest she set-up a game of tennis with Ravi -trying to make sure he also got out and decompressed.

With all of that going on, she helped my parents take care of Arya. They have been watching her quite a bit lately. But she is a handful and a few hours with her can exhaust anyone. So sometimes when it was time for Rohan to take a nap, she would go over to our parents' to give them a break.

So I know many of you love her already. But now you know why for me the word seems to fall short of my meaning. We are bonded in a special way, and as odd it may sound, it makes me happy to know that Rohan is bonded to her in a special way as well. She was there in the delivery room when I was giving birth to him, and she has been there for him ever since. And for that he is lucky.

My Son

I miss Rohan - the boy I have seen him become over four years. I miss the Rohan who doesn't ever admit to being tired. I miss the all-star who will opt to play a sport, any sport, over almost all other activities. I miss the incessant talker, the optimist, the scheduler and the social busy bee. I miss the boy who seems at times to be reasonable beyond his age; the one who brought his compassion with him from another life; and the one whose smile is practically glued to his face. I miss my son! And even though I know that the changes in his personality are temporary and superficial, I just want to see him lob balls at the tennis court and hear him tell me that "When I get bigger and learn how to play golf then I will teach you and daddy. Okay? It's not too hard." We live with the hard facts of the disease and the treatment everyday, but sometimes the less tangible stuff is what causes the heart to break.

So on to the hard facts. Rohan completed his first month of treatment this week. I am relieved to say that his body responded to chemo well. He has less that .01% leukemia cells or 'minimal residual disease' in his body. So what does this mean? For one thing, he is off of the steroids for awhile (giving me hope that any day my son will be returned to me). Second, Rohan can move on to the next phase of treatment. We were waiting for the results of 'Day 29' since this journey began. And though I was anxious about it, I didn't realize how much until we got the good news. The sense of relief that he had overcome a big hurdle was deep.

Thanks to all of you for your prayers and support this past month and in the months to come.

Sometimes We Can Exhale

To start where I left off--last week's hospital visit went well. We were already ahead of the game because Rohan was not getting anasthesia last Wednesday so he didn't have to forgo breakfast! Not only was the visit shorter but some of his counts were going up on their own.

The weekend was exceptional (that is a relative term). First, Rohan took his medications without any qualms which made everything easier. Ravi and I didn't have to take a deep breath before approaching him with them. Second, my sister stayed home at night with the kids so Ravi andI could go to the movies. We finally saw the Batman movie. And lastly, the four of us went to a restaurant with outdoor seating and had a pleasant brunch. In some ways it was a taste of life the way it was only a few months ago.

I see that Rohan has begun to understand on some level that he is sick in a more serious way than when he gets a cold. The other day he asked, "When is my new school starting?" I took it as an opportunity to tell him that he wasn't going to be able to go to school for a while. We talked about how there are a lot of germs at school which could stop him from getting better. "That's fine. Right? I'll just go later," was his response. He has always been that way - positive and light-hearted.

Physically, Rohan is quite changed. His face has filled to the point where it looks as if it could burst if stretched anymore. He has a belly when three weeks ago all of his pants were too big around the waist. He and Ravi like to compare their bellies. I could probably join that contest, but what if I won?!

On that note, I'll end this here. Keep us in your prayers.

Half can of soup

We tried to make Arya's birthday celebration, as small as it was, look like it was something spectacular. After all, she will only be left with the pictures - which we front loaded with presents and balloons!! So even though she doesn't know it, her life has changed a bit. Though I'm sure Arya must know something has changed, particularly her brother. She tries to get him to play with her or chase her, but he is a bit too tired to deal with her. fortunately, she is too young to really understand. Otherwise, she is fine. She thinks she is something special because she can walk now.

I realized the other day that there has been a particularly significant shift for Ravi as well. As you all know, Rohan's been eating outrageous amounts of food. What you don't know is that most of his requests require some cooking. This usually means I am chained to the kitchen, however, there have been times that I have been out. During these times, Ravi has had to familiarize himself with kitchen basics. (You all know he can barely crack an egg!) Once, not able to find tomato sauce for Rohan's pasta - which he thought cooked in three minutes-he used salsa. Well, they're both red and have tomatoes. Luckily, Rohan liked it and has requested it again. The other day, I came home to be told that Rohan had soup but didn't finish it. Rohan complained that Daddy gave him too much soup. Turns out, that Ravi served the entire can of soup to our four year old!! When Ravi learned that you don't do that, he said,"You should buy half-cans of soup!" So, Ravi's trial by fire in the kitchen may turn out to be a good thing. He will learn that pasta takes a bit longer than three minutes; that it's okay to substitute (sometimes); and that soup does not come in half cans!

Overall, we're doing okay right now. Rohan was well over the weekend and goes to the hospital tomorrow for his weekly treatment. Hopefully, they tell us all is on track.

Signing off now to see my girl address the DNC.

"Look well into thyself"

Fortitude and patience. These are not qualities any four year old, including Rohan, posseses in great abundance. Yet fortitude and patience are exactly what I hope will be bestowed upon him now. In these few short weeks, I have puzzled over how he will get through the next few years without a strength of mind that many of us have never been required to have throughout our adult lives. I see him even now trying to summon his resolve when it is time to take his medications. He cries and says "you know I don't like it," but keeps his eye on the syringe the whole time. After what seems like an eternity, he points to it and signals that he'll have it now. In that moment I see a glimmer of the reserves of courage he already has to draw upon, and reminds me every time of a quote by Marcus Aurelius:

"Look well into thyself; there is a source of strength which will always
spring up if thou wilt always look there."

Patience on the other hand is a bit handicapped at the moment. The effects of the medications hinder the nurturing of an even-keeled manner. Besides, if he takes after me, he may always be a bit lacking in patience!

On a more clinical note, we've had some good news. Rohan is responding well to the chemo, and the doctors say we can be hopeful that he will be where he needs to be by the end of the month. Clearing even a little hurdle makes a difference. Also, we went to the hospital this morning to see if Rohan would need platelets or blood, and he didn't because his numbers are going up on their own. Not only was this good, but overall the whole trip was as pleasant as it could be for Rohan. He smiled and talked to the nurses and doctors. This was a first.

Tomorrow is Arya's first birthday, and we have yet to figure out how to make it special. Rohan says "Get a cake with ice-cream and cookies, and I'll give her that fire truck for her present." Who can argue with cookies, cake and ice-cream? A hand me down fire truck? Good thing she's too young to know or care!