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.