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!

"What should we have for lunch tomorrow?"

The day is one looong meal for Rohan: two bowls of cereal, dal & rice, tea & biscuits - all between 7 am and 9 am. Next, a "snack" of pepperjack cheese, crackers, a cookie and toast. Are we still going to have lunch? You bet because we have been discussing what we'll be eating for lunch since the day before. So at noon it's pasta with red sauce, chocolate milk and more cheese! Our conversation during lunch comprises of Rohan asking "What should we have for lunch tomorrow?" and "What should I have for snack after my nap?" Snack is freshly made pakoras with ketchup (these days ketchup goes with EVERYTHING), a peach yogurt and pita chips. There was yet one more snack before Rohan took part in Arya's dinner with the caveat that he was still going to have the Thai food that he had requested. "I think I am going to have two dinners today," said my little guy!!

All of this excitement about food is not a growth spurt but an effect of the medication. Though it feels like I am living in the kitchen, it is also quite amusing to hear him pontificate about food all day long. When he is not actually eating it, he is talking about it.

On another note, we have gone two days without Rohan crying when it is time to take medicine...hurrah!! With five medications twice a day, who could blame him for being upset. He set an example for Arya by being brave and taking all of his meds without tears. "See mommy I showed her how to be brave." It is in moments like that when I find myself hoping this ordeal doesn't change his punchy, witty and empathetic personality.

Hospital visit was good as well. Now we wait for the results of the bone-marrow aspiration. Keep your fingers crossed that the chemo is working.

The Beginning

I can't believe it's been two weeks to the day that we first found out that Rohan had leukemia. I'll never forget the moment - I was alone in the emergency room with him, and it felt like my stomach fell to my feet. I have no doubt that the memory will always have a tangible quality for me - whenever I think on it, I will experience it all over again.

The facts: Rohan has pre-B ALL which is the most common type of leukemia in children his age. "The thing to keep in mind is that there is a 95% recovery rate in children," said Dr. Fritz on that fateful day. We do keep this in mind, and it keeps us hopeful. The treatment is three and a half years long with, I am assuming, many peaks and valleys along the way. Currently, we are in the first phase of treatment. We take Rohan to the hospital at least once a week for chemo. He is also on numerous medications at home - most of them to counter-act the effects of the chemo. Right now is also immuno compromised and at risk for bacterial infections. We are doing all we can to prevent this since a fever would require us to go to the hospital and be admitted for 3 days!!!

The changes in our little man's life have been immediate. In addition to the medications, doctors, and hospital, Rohan cannot go to school for at least six months. We haven't told him yet, and he is looking forward to going his new school. Luckily, it is summer, and, being four, he has no concept of when summer vacaton is over. As a matter of fact, he thinks the word vacation means going to the beach and staying in a hotel. Which brings me to the fact that flying is a no-no for quite some time. You all know airplanes are breeding grounds for germs. The biggest change is that we cannot have children over right now. Those of you who know him, know what a social creature he is. We, the grown-ups, are trying to keep him busy and happy. He has always been good with adults so it can only help him now.

We are off to the hospital tomorrow for our weekly treatment. Hopefully we get good results and find that he is responding to the chemo.

Keep our little man in your prayers.