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.