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.