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Friday, October 31, 2008

Rip Tide

October 26, 2008
Rip Tide.

Too many years ago when I was in my early 20s, living in Virginia and going to the Outer Banks beaches as often as possible, I had an experience with a strong rip tide that scared me to the point that even today I’m still extremely cautious about swimming in the ocean. On a gorgeous September day, my favorite beach girlfriend and I walked to the beach from the lime green cinder block house we had rented with the requisites in our beach bags: Diet Coke, Pennsylvania Dutch style pretzels, books, Walkmans (this was well before the age of the iPod), baseball hats, sunscreen, towels and beach chairs. We were the kind of gals who spent the entire day, until the sun set, on the beach. We didn’t turn our chairs to face the sun, we put our chairs in one spot and let the sun rotate around us. We liked going to the beach in September because there were very few people on the beach during the school year and we were “serious” beach goers who liked peace and quiet. On one of our beach days, I took a swim by myself to take advantage of the warm ocean temperature. As I floated along, watching porpoises jumping off in the distance, I noticed I was drifting out and away from shore a little faster than I expected. I started swimming back to shore and quickly realized I wasn’t getting anywhere. I tried harder. And harder. I started to panic and swam as hard as I possibly could. But the harder I swam, the further from shore I seemed to be. By the time I realized I was trying to swim against a rip tide, I had used up most of my energy. I could see my friend on the shore sleeping with her book on top of her face and all of the sudden felt quite alone. I realized I could drown and no one would know. I could just be swallowed up by the ocean and literally no one would realize. OK. OK. Think. Calm down. A rip tide can be overcome. Start swimming along shore. Don’t try to reach it…just keep it in sight. Relax. You’ll get there. And eventually I did arrive on shore with my beach chair so far away I couldn’t see it. But I was on shore and grateful. I sat on the sand, exhausted, looking out at the water and shivering. Just writing about the experience, which happened more than 15 years ago, makes my heart race and the blood in my body feel like it’s draining out. It was that strong of an experience.
Liam’s return to 3F8 treatment felt like a rip tide. From the onset of pain on Monday until Saturday night at 10 pm, it was nonstop moaning, groaning, vomiting, “Mommy – Hold me!”, “Mommy – I need another little white pillow” (what Liam calls Dilaudid which I’ve heard is stronger than Morphine) week of owies, fasting, and wanting to be curled up in a fetal position in the dark. In the more than 20 months since Liam was diagnosed, he has never asked for a pain pill. He begged for them this week. He begged me to show him where the hands on the clock needed to be, even though he could barley focus on anything from all of the narcotics, before he could have another “little white pillow.” His hands and feet tingled in an intense pain that is similar to when a body part falls asleep and starts to wake up but intensified exponentially. “Rub me,” “Don’t rub me.” “Rub me softly,” “No, rub me quickly…faster, Mommy, faster.” “Don’t rub me there.” “Rub me here.” “No, not there, here.” “Mommy – It hurts!” Daddy was pretty much rejected all week. Ella was not even allowed in the same room by Liam’s decree. Liam would wake up in a panic in the middle of the night that he was going to wet the bed and tell me to carry him “quickly, Mommy, quickly!” to the bathroom where I would have to place him on the toilet and then stay close enough for him to rest his head on my shoulder. His pee had the worst smell to it all week. One night he saw grandma sitting on the ceiling next to his cup of water. I had to stand on the bed, reach up and grab the cup of water in order to appease him. After Monday’s breakfast, he didn’t eat. And when I say he didn’t eat, I mean he didn’t eat…a thing…nothing. Everything he put in his mouth tasted bad…a side effect of the narcotics. He would try something and then cry in frustration when it tasted like medicine. He would brush his teeth in bed over and over and over again using two cups – an empty one to spit in and a one with water for swishing - to try and make the taste go away. He would brush and then try eat something and then cry because it still had the “medicine taste.” He didn’t want to drink because he was afraid it would make the owies in his tummy worse or it would make him throw up. By Wednesday his glucose levels were so low that I was encouraged to give him sugar on a spoon, which he ultimately refused but allowed me to give him a few bites of ice cream which he declared was icky. We also started 24-hour doses of intravenous Zantac to protect his tummy from all the acid in it and alleviate the new feeling of discomfort. “Mommy – my tummy feels funny.” “Is it owies?” “No – it’s not owies, it just feels funny.” It was a really, really hard week. It was hard not to get upset at the people who would peer into Liam’s stroller as I was trying to catch a cab or shuttle him to/from the apartment to catch a peek at the child who clearly was too old to be curled up in the fetal position. I tried to ignore their stares at the bald headed little boy with the puffy face, but I saw every one. I hated it. I just wanted to protect my son. I wanted to jump out of the cab when one driver kept turning around while driving to stare at Liam. I finally had to ask him very firmly but politely to please keep his eyes on the road. But Liam’s spirit, as always, couldn’t be dampened. Even in his narcotic haze, he would tell me in a very weak sounding voice to go to the other corner to catch a cab because I’ll have more luck. He wanted to make sure the cab driver was going up 1st Avenue or the FDR to avoid traffic because traffic would “make us late for the hospital.” He wanted to be carried everywhere. I had to lift him from the stroller and place him in the back seat of the cab as gingerly as possible as he grunted and moaned. He wanted his eyes to be shaded. He didn’t want the TV on. He didn’t want any noise. He just wanted to be quiet. All week we could see the shore. We knew it was there. We just needed to let the tide float us along until we could get back on solid ground. Liam’s shore was school. My shore was to see him being himself. It was agony watching my little boy listless and in pain. It made me feel like the worst parent in the world for putting him through it but also grateful to know he was receiving precious antibodies that there never seems to be enough of for all the children who need it. And in the morning when it would be time to go to the hospital, Liam never once said no, he didn’t want to go or complain. Instead he would want me to keep him posted on how long it would take me to get ready and encouraged me to hurry up. The best part of the week was not having to do a shot on Friday morning. His ANC level (the type of white blood cells that are the fighters) was so high he didn’t need the 10th shot. But by Friday, he was so exhausted and out of sorts I’m not sure he even cared.
We’ve spent the last week on shore recovering from the experience and grateful to be on solid ground. We haven’t talked once about the hospital and have immersed ourselves in “normal” – being an exuberant preschool student and loving brother with a hint of mischief. Liam’s hair seems to grow in front of our eyes which excites and delights us. We were very grateful that his eyelashes didn’t fall out from chemo like they did last time. This time they didn’t fall out until there were new ones underneath to push them out. So right now his long, luxurious eyelashes are teeny, tiny little eyelashes…but they’re there which is all that I care about. Larry and I are in endless “catching our tail” mode working during the day and then a second shift at night. The night shift is reserved for Cookies for Kids’ Cancer work and reading cancer research news. There’s never a night one of us and most of time both of us have our computers out working. We’re going to do holiday cookies again, but this time have committed to 120,000 cookies vs. the 96,000 we did last year. (Anyone looking to not only be a good cookie but give a good cookie this year for everyone they know? Remember…they’re tax deductible!) So for now, we’re enjoying the respite and trying to live, as always, as much in the moment as possible and enjoy our time on shore.

Monday, October 13, 2008

Wait - Haven't we been here before? Day 1, Round 1, Second Go at Antibodies

My lost post vanished into cyberspace so now I need to be very brief so that I can get back to some pressing work.

Today was the first day of antibodies, Revisited. The day started with an 8:15 a.m. arrival at the hospital, we left at 6:15, and at 10:15 p.m. Liam is uncomfortably resting on the couch curled up with his Batman blanket (thank you Martha and Sisters), super soft yellow blankie, puppies and pillow. He's in extreme discomfort and has taken the max amount of pain killers he can take until 2 a.m. He's grunting, moaning, yelping, whimpering and crying. OK. This is hard. There's nothing I can do to relieve his pain except whisper to him that the pain medicine should be working in just a minute.

The day has had all the usual assaults on the body and senses associated with a first day of a new treatment at the hospital including finger stick (which requires negotiating and then restraining), accessing his port(which involves negotiating and restraining) and hearing the agonizing cries of other children as they deal with whatever their treatment is calling for on this particular day (which involves lots of explanation to Liam's questions about why other children are crying). Remind me again why we spend so little money on children's cancer research? Can I please ask the share holders of pharmaceutical companies if they would want the same pharmaceutical companies looking for cures, even if those cures wouldn't ever be multi-million dollar profit centers like other drugs or if they would want those companies to continue to turn a blind eye to all children? OK. OK. Fine. I'll stop. In the interim while I take care of my baby who Ella is so worried about, visit the Cookies for Kids' Cancer website (www.cookiesforkidscancer.org) and plan a bake sale.

Day 1 sort of over. Four days left.

Friday, October 10, 2008

Liam and His Guys II



I'm working on an update but everyone should feel good about where we are right now. Liam's looking great and doing great. He is beginning a week of antibodies on Monday, 10/13, which probably means he'll miss a week of school which is a bummer. The good news is after a week of antibodies, he'll have a three week break. (Three whole weeks off from the hospital...what will we do?!) We've started the daily injections that are part of the process, something he understandably despises receiving and we hate giving. While I finish up the next update, which is tentatively titled "Am I coming or going?" to reflect the crazy nature of our lives in recent months, we wanted to share with you a very special picture that was taken two days after Liam's surgery in mid-July. Liam's "guys" are such an integral part of our lives that at this point they're family. We love them and their support. When I look at the picture, I realize how much I miss his hair. I miss it so much it hurts. But what I also see is Liam's spirit shining through which makes my heart smile. Today he had a play date with Taber, a little girl in his class with long, beautiful brown hair. Taber is a new friend and equals Liam on spirit and energy, something I didn't think possible. As I was playing hide and seek with Taber, Taber's Mom and Liam and listening to squeals of anticipation and delight, just for a moment I felt "normal" and like a mom instead of a warrior mom. I don't want to be a warrior mom. I really don't. I just want my son and I don't want any more pain for anyone else. Leave the pain for adults. Let's protect our children from pain as long as we can.