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.