I’m getting that “deer in the headlights” feeling again. (Someone, anyone…please talk me off this cliff.) We continue to be on a good path – all of Liam’s tests came back showing no evidence of disease but we’ll repeat the battery of tests in 90 days – yet everywhere we turn we keep hearing of another comrade who hit a bump in the road, is barely hanging on or has fallen. My heart breaks and breaks again a dozens of times a day thinking about all the precious lives that are in jeopardy including, ultimately, our Prince Liam. I wake up several times a night in a panic realizing I was dreaming about one of Liam’s fellow fighters. The image that keeps coming to mind is the scene in Finding Nemo where Nemo’s dad and Dory are swimming through the field of poisonous jellyfish trying to avoid the dangling tentacles. It looks like an impossible journey but somehow, they safely navigate the minefield with only minor bumps and bruises. I constantly feel like I’m on alert avoiding a sneaky dangling tentacle. I constantly feel like I’m watching every move very carefully. I’m measuring everything…he ate well one day, he didn’t the next, he napped for an hour one day, and three the next. And then I have to remind myself that Liam just wants to be a kid playing (and, at time torturing) his sister. He’s questions everything and wants to have a ready explanation for why a doctor needs to “take a little blood” or why he has to take a pill. (The one answer that always stops his line of questioning is, “Because Dr. Kushner loves you.”) I’m still finding the need to give him just enough information to answer his question but not too much. My explanation for the bone marrow test was that Dr. Modak needed to take a little blood in a funny area that might hurt which is why he gave him the white medicine. Liam was OK with the explanation and it sort of is true since bone marrow ultimately is big part of blood, right? I heard another mom telling her four-year old son making their first trip to Sloan-Kettering that the doctor, who was a stranger to this sweet little boy, was going to take some bone marrow. The little boy’s fear and terror spilled over from him and gripped my heart so tight it was hard to breath. I don’t think Liam is ready for me to explain the concept of bone marrow. Or maybe I’m just not ready to.
On the day of Liam’s MIBG scan we arrived early at the Day Hospital. Liam was still in his beloved one-piece fireman jammies curled up in a ball in the stroller with his four puppies, pillow and super soft yellow blankie along for the ride. The waiting area was empty – a sight only seen very early or very late at night. Just as we were walking down the corridor next to a darkened playroom, the orange door to the doctors offices opened and out walked Dr. LaQuaglia. We haven’t seen much of him lately which is a good thing for us but also means he has been in the operating room a lot. We exchanged hellos, he was genuinely happy to see Liam with a full head of hair, and then he started to walk away. He stopped, looked at me as if he was deciding if what he was about to say was a good thing, and then asked if I’d be willing to talk with another family that was a recent diagnosis. My response was immediate. “Absolutely.” Dr. LaQuaglia left and came back with a very tall and imposing looking man who looked fragile enough to blow over with a quick puff. Introductions were made. Dr. LaQuaglia left. The man started to cry. I grabbed his hands and tried as hard as I could to hold back the tears but, ultimately, was unsuccessful. When he caught his breath, I looked hard into his eyes and said, “You can do this. You have to do this. Your child needs you.” I introduced him to Liam and told him when Liam was diagnosed. He cried again and reached down to feel Liam’s hair knowing that his son was about to lose his. A bed used to transport patients to the operating room passed by us and I recognized the person pushing it. The dad told me they arrived in New York the day before. They had taken their son to the doctor on Monday, had a diagnosis by Tuesday, and were on a plane to New York from Miami on Wednesday. And his words brought back all the horrors of the first few weeks of Liam’s diagnosis. The terror. The fear. The disbelief. The utter horror. The feeling of bile in your throat and a stomach in a constant ball of intertwining knots. And then I heard the screaming. Blood curdling screams of terror from a little boy yelling, “DON’T LET THEM TAKE ME! I DON’T WANT TO GO! MOMMMMMY!!!!! MOMMMMMY!!!!! NOOOOOO!!!! MAKE THEM GO AWAY!!!!!” My blood turned to sludge and I wanted to run away with Liam to protect both of us. But I stayed. Out rolled the bed carrying a very tan looking mom clearly wearing the same clothes she had worn the day before. Her son was impaling himself into her chest with his arms wrapped around her neck and legs around her waist. She looked terrified and lost. The bed stopped in front of us. The boy continued to scream. Liam asked what was going on. I kneeled down in front of him and in my calmest voice said the little boy was scared because he was going to have to give a little blood. Liam told him not to be scared and then started to recount how it doesn’t really hurt, just feels “squeezy.” I put my hands on the mom’s legs to try and force strength from my body into hers. Her legs were frigid. She looked at the stranger holding her legs. I stared into her eyes and whispered, “You can do this. You can do this. Be strong.” Her eyes locked onto mine and we stared into each other’s eyes. I wanted to look away. The pain in her eyes was so raw, so fresh, so difficult for me to see. I felt the scabs on my wounds ripping away and a fresh drop of blood coming out. It is so hard to go back to those days of terror. But I had to do it for her…this woman in her summery outfit plucked from her life into this horrible one. They left. Liam and I proceeded about our routine for the scan that is the most definitive one. The scan that takes more than hour and leaves you with a block of time to let your mind wander. I don’t think I can begin to explain how hard it is to feel your child succumb to the effects of anesthesia and then turn him over to the care of others. It’s a completely unnatural, unnerving feeling. It’s just not right.
While Liam was undergoing his scan, I pushed his empty stroller to the sixth floor to see the family from Miami. Mom sat huddled in a ball on the sofa. Dad sat in stunned silence. I took a deep breath. I didn’t want to be there. I didn’t want to go through their pain with them. But to not help them through the very, very dark days wouldn’t be right. We talked. We cried. We hugged. I tried to give them strength. I found myself in a strange-feeling overdrive mode powering through my own pain in order to give them something to move towards...a child in the 3F8 phase of treatment. I remember when 3F8 was first explained to me how it seemed so utterly far away that is was a place we would never reach. I wanted them to see they could make it. And when I left I hugged the mom…tight…and whispered in her ear that I loved her and would get her through this.
And then I went back to nuclear medicine, picked Liam, his puppies and pillow complete with the magic stone that saw Bob Woodruff through his recovery up from his anesthesia slumber, prayed to the machine to give us a good result, took Liam back to the apartment, and went to work.
Our early days keep crashing in on me. Angry snapshots of words and images keep interrupting me. Words and sounds I never want to hear again. Words that I buried deep inside of me. I know how that mom feels. And I would do anything in the world to take her pain away. Anything. I haven’t been in a war between countries or races, only between cells, but I think I understand why people who have been in a war don’t like to talk about their experience. Sometimes it’s just too painful to relive.
The next night I brought the mom a “welcome to life in the hospital” care package. I included my favorite comfy clothing that I wore in the hospital – the ones that look decent even after sleeping in them. I brought the softest t-shirts and jammies I could find for her son. I brought her lots of socks (a requisite), gum (a quick way to “brush” your teeth when getting to a sink just isn’t possible), a supply of Crystal Light single portion mixes (what I lived on in the hospital), hair ties (can’t have enough), lotion (lots of lotion needed for chemo-dry skin), socks for her son, laundry detergent, a shower bag with handles so that she doesn’t have to rest it on the floor of the one bathroom with a shower shared by more than 35 families, and all the other goodies that were brought to me by friends in the early days. It felt good to pass along the knowledge of how to get through the first few days to her. It felt good to help. It felt horrible to be back in those early days.
As a community circling Liam, we have come so far. The word cancer doesn’t scare us the way it did when we all first heard it. It’s still not a nice word, but hopefully doesn’t leave us with an urge to turn a blind eye or run away. Our community has circled the wagons and protected us as we’ve navigated the waters. You’ve been there for us. You’ve fought the battles with us. You’re cheered us on and boosted us when we were down. I don’t know how we would have made it without our community. And yet we still have a longer road ahead of us than the one we’ve already traveled. As a community, I’m so impressed. We are pretty darn awesome. And as a community, I think we’ll figure out where we go from here. We’re still very much in the thick of the battle, but if we can do something to effect change then it’s worth the effort. We’re formulating our next steps but an immediate thing we can do is support the Conquer Childhood Cancer Act that is currently in committee. You can click on the links below to see if your representatives and senators are signed up as co-sponsors. The Act is the work of Congresswoman Deborah Pryce who lost a child to cancer…I believe the same kind that Liam is battling.
The Conquer Childhood Cancer Act is due to be discussed in committee soon. If this bill is signed into law, it would mean $150 million towards pediatric cancer fuding. It's especially important to contact your representatives to see if they are supporters of the bill. You can check if your REPRESENTATIVE has signed on here:
You can check to see if your SENATOR is a cosponsor here:
For more information about the Conquer Childhood Cancer Act, please visit http://www.curesearch.org/ for "ready-to-send" e-mail letters to reps and senators.