The True Side Effects

Almost two weeks into Long Term Maintenance (LTM), we are still adjusting to being able to go out into the world and do the things that until seven months ago we had taken for granted. You all know - those everyday errands and outings that give the rhythm to your week. For example, going to the supermarket is something we were not really able to do with Rohan. That meant that if I didn't have what I needed/wanted to make dinner, I would have to come up with something else to eat. It was frustrating to say the least, but for the last 12 days we've been faced with a new kind of frustration.

Rohan is experiencing a side-effect not from any medication but from having been confined for so long. Two days last week the first thing he said to me in the morning was, "Let's just not go anywhere today. Let's stay home all day". The rhythm of his day involves waking up and eating cereal while watching t.v., playing Wii Sports or Super Mario with me, bathing, dressing, eating lunch, napping, snacking, puzzles, board games, a visit from Ba & Dada, helping make dinner, And he doesn't want to dance to a different song. As a result, there have been many tantrums in the last week - "I don't want to go to get coffee"; "I can't keep leaving the house everyday"; "I just don't want to go to Trader Joe's". These are battles I fight in order to transition back to life as he knew it.

To make the family dynamics even more difficult, Rohan has separation anxiety. He doesn't want me and/or Ravi to go out, and when we do, he throws a tantrum that involves screaming, crying, rolling around on the floor and yelling "I don't waaaant you to go aaanywheeerre". This can and has gone on for up to 30 minutes! Again, we try not to give in with the hope that the more he is away from us, the easier it will become.

My poor bugger. The hospital staff has been so informative about side effects from the medications, but they have been completely remiss on the soft stuff. I'm not even blaming them. I understand that each child must process and react to the trauma in different ways, but a guide book would be nice. The real side effects are the emotional scars that this disease has left. Until they heal for Rohan, we are doing the best we can.

Raining Confetti

Hip, Hip... Hurray!!!! Last Wednesday we went to the hospital, as we have every Wednesday for the last six months, and Rohan's counts were good enough to begin Long Term Maintenance. For this visit it didn't mean anything particularly different - he was put under while they gave him a spinal tap; he had additional medication given to him through his port; he got to pick a toy out of the treasure chest. However, when the nurse took us through the treatment schedule for this phase, she told we were not due to be back in the hospital until March 3! WHAT?!? Would we not be able to rattle off his blood counts- hemoglobin, white blood cells, platelets, ANC- on a weekly basis? This made me uncomfortable, and so she told me I could bring him in for bloodwork in two weeks. I am sure I am not the first parent to have symptoms of withdrawal.

Here I would like to pause for a beat, a breath, a moment.....................................................
Rohan made it. We made it. Yes it's still another three years, but these six months were critical, difficult and restrictive and let's not forget the emotional upheaval. When we left the hospital, I felt like we should have been transported to something akin to an auto dealership commercial: confetti and balloons falling from the sky; a big band playing in the background; and a loud, obnoxious sounding guy yelling into a microphone, "CONGRATULATIONS!! You have made it back from the other side of the looking glass. Your life can be like it used to be. Rohan, go play with your friends, go swimming, go play tennis. Arya go meet other toddlers. Mom and Dad, the door to the Waiting Place is open, so step through"! Hell, it seemed there should have been a full blown ticker tape parade!

Even though we are not at the end of this long road, we have passed a significant milestone and want to spend at least a little time being appreciative of that.