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Tuesday, July 31, 2007

Tuesday July 31st Update

Round two of 3F8 treatment was about the same as round one, except with enough experience so that it wasn’t such a shock to the system to see our little guy in pain. The pain for round two was different. Liam actually said, “owie owie owie” this time instead of just saying he wasn’t comfy. He seemed to have more discomfort. He despised the daily morning injection of medicine to stimulate white blood cell production. The process required Larry restraining Liam so that I could line up the tip of the needle with the small tube in his arm all while Liam screamed, “WAIT – WAIT – WAIT – WAAAAIIIIITTTTTTT!!!!!!” He also was nauseous almost every day. Most of the time he would warn us throwing up, but not every time. On Tuesday, the day I had a friend visiting who hadn’t yet seen Liam or been involved in the world of pediatric cancer first hand, there was no warning. On that day, the remains of a slice of pizza, chocolate chips, and milk went all over me and soaked me down to my underwear. Liam and I have been down this path of throw up…he and I know what to do. I found myself more concerned for our visitor knowing that the scene might be uncomfortable for her from both a sight and smell perspective. To be covered in throw up didn’t bother me…I’m used to it…all I wanted to do was tell our visitor that it was OK and get some clean sheets to drape over me so that I could keep holding Liam who was saying in his slurred narcotic-induced state, “oh no mommy…oh no mommy.” I was smarter after the first throw up session…I added an extra change of clothing for me to the hospital bag. One day he made it through his time at the hospital without vomiting, but couldn’t make it home. Luckily the cab we were in was stopped at a red light and Liam gave me enough warning so that I could open the door and let him throw up onto the street instead of in the cab. When the light turned green, I told the cab driver that he wasn’t allowed to move. We were the first car at the light. Cars were honking behind us. He didn’t move an inch. I kept trying to comfort Liam as he threw up over and over again onto the street.

His evening pain, what’s referred to as residual, wasn’t as bad in the evenings as it was the first round. But, he still was pretty out of it and wanted to be comforted and coddled. Most nights were spent with Liam falling asleep on top of either me or daddy. And, true to Liam spirit, whenever he did have residual pain he refused to take any pain medication.

The routine through Thursday was the same - go to the hospital; do our session of pain; hold Liam in the exact position he indicated was the most comfortable which usually was one of discomfort for the holder; wait for Liam to say he was recovered enough that we could leave the hospital (he doesn’t like it when you try to move him too soon); come home; comfort him as much as possible; and then go to work. On Friday in an effort to avoid a throw-up session in the cab, we walked home. Liam slept the entire time amid cars and trucks honking, the bustle of people walking by him, and going down and up nearly 50 sidewalk curbs. And when I saw people looking at the little boy sacked out in his stroller, I wondered if they were looking at him because of the slice of Americana in the midst of Manhattan or because of Liam’s thin hair. Most of the time I avoid the look in people’s eyes. I’ve had too many instances of seeing people glaring and staring at our Little Prince which makes me feel fiercely protective, angry and sad. I also have a hard time looking at other toddlers being pushed in strollers by nonchalant parents or nannies. It makes me profoundly sad knowing we will never be able to basque in the bliss of good health. We will always have the fear of cancer nipping at our heels. But then there’s another side of me that is much, much more aware of everything that my children do…everything is more precious. Every smile. Every hug. Every cry. Every “I love you.” Every time he wants to hold my hand. I find myself drinking in and savoring everything with much more awareness.

Overall the week was one where on some days I heard the screams of pain from other children, but on other days I didn’t. There are parts of me that are just numb and others that are acutely aware of everything.

We met Daddy and Ella in front of the New York Public Library on 42nd Street and walked home together. From the minute Liam was aware that Daddy and Ella were near, he wanted to be able to see them even if it meant taking up most of the sidewalk with side-by-side strollers. And then Daddy mentioned the fire station. Liam finally woke up enough to show interest in something. And as we were deciding whether or not he was up for a visit, Liam decided for us by pointing his finger in the direction of the fire station. So off we went. And when we arrived, Liam got out of his stroller and started his inspection of the “his station.” It was like watching a butterfly emerge from its cocoon. He wanted to see everything and then asked for Fireman Milk, Fireman Chocolate Milk, and Fireman Ice Cream. And the guys at the fire station treated Liam as just one of the guys. And for that refuge away from stares….we are so incredibly grateful.

Liam’s expressive eyebrows and enviable long eyelashes are back. And you can see a fine layer of hair growing back. It’s very short but it’s growing…every day it gets a little longer. It’s still hard to tell what color it is but it’s definitely coming back. Next week we have a break from the hospital We’re there on Monday, July 30th, for a bone marrow test that is done under anesthesia and on Thursday for a blood draw in conjunction with the start of Accutane. Yes, Accutane. Our next challenge is to figure out how to get three pills of Accutane down Liam every day. He’s three. He doesn’t know how to take pills. But Accutane has been found to be very effective in attacking immature cancer cells…so somehow we’ll need to figure out how to deal with this challenge. I’m sure Liam will help us.

Someone recently noted that we don’t seem to be encouraged by how well Liam has done. It’s not that we’re not encouraged but we’re also aware of how relentless this cancer is to not be guarded. There isn’t a doubt in my mind that Liam will win this battle and that we’ll be watching him graduate from Dartmouth in 2025. There have just been too many strange coincidences, signs, overwhelming outpouring of support and amazing progress by our Little Prince to not believe that he isn’t going to be the next cancer researcher. But we’re also not at a point where we can relax. We are still very much in the thick of the battle and trying to figure out how to deal with this new reality which requires straddling two very different worlds. We’re not happy and we’re not sad. We’re tired. We’re worn out and we have little tolerance for things that truly aren’t that important. We’re trying to take everything as it comes but if you’re someone who likes order, this new reality can be tough to accept. We’re also still very engrossed in the scary world of the hospital where life and death are much more immediate. It’s hard to see the future because everyone we’re with is in the same boat that we are – a boat that is floating but still too close to the seas where it capsized to be a memory. But I can hear words of encouragement being used by our doctors which of course bolsters our spirit. For the first time, one of the particularly cautious doctors talked about a life outside of the hospital that was waiting for us. To hear those words was a big deal coming from a doctor who typically holds back on any words other than caution. We’re not doing any counting of chickens yet…we love our son too much to make the blind assumption that he’ll always be here. We do, though, see a time when we can go to London to meet his pen pal and feel comfortable being far away from the hospital. And we do see a time when Liam’s first words after he wakes up aren’t, “I’m ready to go to the hospital.”

And now, as we struggle to figure out this balance between what was and what is we also are figuring out what next. What do we need to do to make sure the meager $2.1 million in pediatric research funds that were redirected to the war in Iraq are given back to researchers who have dedicated their life’s work to children? Do we forget the government and do it on our own? I’ve told friends that I feel like my whole life has been a dress rehearsal for this experience. Pediatric cancer needs us. More than 80% of children who are battling cancer are in some sort of clinical trial…just like Liam. And yet the advances that have been made in pediatric cancer are astounding. Again I find myself questioning if it’s all just lip service that children are our most precious resource. If they are…why are we not supporting them more? What do I need to do to change this?