Friday, September 21st closed one book on our journey and began a new one. It was the last day of Liam's fourth cycle of mouse antibodies. (The first four cycles, each cycle is five days, were three weeks apart.) With the end of the fourth cycle, we now move to every eight weeks apart. It also was the day of Liam's second full battery of tests to search his little body for any cancer cells that have escaped chemo, surgery, radiation, three rounds of antibodies and retinoid (Accutane) therapy. Liam will undergo, or should I say endure, this battery of tests every 90 days for the next two years to make sure he is "clean." I have a new way of thinking about this period of testing. Instead of thinking about it as two whole years…which sounds very long to me…I think about it as rounds of tests. We have eight or nine of these tests to go through. We've done two and now have six or seven to go. Superstition won't allow me to mark the dates on a calendar…but my internal calendar is extremely aware of the dates. I try not to think about them, but it's impossible not to. And now I realized we're living life in three-month vignettes. And while yes, I know….life has absolutely no guarantees…it's different when you know you have these dates hanging out there reminding you to live and love.
We left town on Saturday, September 22nd for a two-week "regroup as a family" break to the house we've vacationed the last few years. We always go this time of year when the weather isn't blazing hot and there's relatively little traffic so that part felt normal. What didn't feel good was replaying memories of our trip last year when we were still innocent. I also kept trying to find signs of cancer in my memory's eye when I replayed scenes from last year. Was there something I missed that would have told me his body was being invaded? Was it the day he took an early nap? Was that my clue? Was it the day he didn't seem excited about being at the beach? When was it? When? Why didn't I know? I feel like there was something, some little thing other than being a picky eater I should have noticed. And then I remind myself there's a reason this type of cancer is called the silent killer.
We've been talking to Liam and Ella about going to "the beach house" for months. Liam would spin the globe that we brought from his bedroom in NJ to his new one in his "city home" searching for "his" beach house. He would find it (usually he would point to Fiji – which is far away from the actual location in Massachusetts but not a bad place to have a beach house) and talk about all the things he was going to do from building sand castles to fishing with daddy. We made these plans months ago…I think back in May…when the family we rent a house from contacted us when they heard about Liam. We didn't realize when we made the plans just how naïve we were to think we could schedule something months in advance. But now, knowing how many friends are having delays in treatments from complications, we were bloody idiots for thinking we could plan as far in advance as we did. It reminds me of the saying that birds can fly because they think they can. We just always thought we'd be at the beach house when we planned since that's what Liam's medical team projected. A delay never crossed our minds. I suppose ignorance truly is bliss. And except for having to take Accutane twice a day and antibiotics three days/week to prevent a nasty strain of pneumonia that plagues those like Liam who are immuno suppressed, our Prince didn't have any other medical terminology to have to deal with during our stay at the beach house.
Liam and Ella had a wonderful time and seeing how much both children have grown and developed since the last time we were at the beach was amazing. Instead of Ella being a baby, she served as a trusty play companion for Liam. They played, and played and Ella basically did anything Liam instructed her to do. It was heart-warming and heart-breaking to see how much Ella truly idolizes and adores her brother. I would catch her watching him and then repeating everything he did. When she would wake from a nap and didn't see him, she would call out, "Wee-UM! Wee-UM where are you?!" WEE-UM!" They slept in the same room, fought over the same toys, and competed for the "who's going to use the potty first" award which was a hearty round of applause. There are many times Larry and I feel like we have twins seeing how similar in ability the dynamic duo has become. And, true to our journey, for some strange reason that is hard to believe it's only a coincidence…on the morning after our arrival Liam was in his routine of watching Curious George on TV. The Curious George episode airing was an old one…the one where George was at his beach house building sanding castles. It was the episode Liam has seen over and over and asked us question after question about to make sure his beach experience would be exactly like his idol "George the monkey." OK – I know there's a logical explanation as to why that particular episode of Curious George was airing, but of all the episodes that could be airing it was the beach one. Hmm. I think I'll ponder that one.
As the time away from Memorial Sloan-Kettering stretched from hours to days, I found there actually were times I didn't think about "it." Those times were fleeting, but they did exist. And there were other times I looked at my adorable children so full of life, love and energy while the words "CANCER, CANCER, CANCER" screamed in my head. Those are the times I loathe with a passion. I don't want cancer to be a part of our lives any more, thank you very much. I'm done with it. I will never, ever take anything for granted again. I will cherish each moment life has to offer. So, please, cancer, go away. Just please go away.
Most nights of vacation found either one or both of our children in our bed having awakened at some point during the night crying out for mommy or daddy. This is a huge change from life before cancer. Before cancer we were the family who proudly talked about how our children never slept with us. Now we find ourselves with either Liam or Ella soundly sleeping next to us or on top of one of us. It wouldn't be so much of an issue if Ella was a sound sleeper, but instead she's like a breaching whale flopping from side-to-side a dozen times during the night. Many times we'd hear Liam saying, "Ella – Go back to sleep!" The other thing that has changed is how much Liam loves to feel mommy or daddy next to him. Requesting "Twinkle Twinkle Little Star" be sung and feet rubbed are two things Liam asks for every night, something that certainly didn't happen before cancer when he would sometimes put himself to bed with a simple, "I'm going night night" to us.
The big project for Larry during vacation was building a website, the first time he's ever tackled this task, for the Band of Parents group we are a part of. This is the group of 60 families feverishly working to raise money to fund manufacturing of a humanized version of the antibody treatment all our children receive. The belief is that a humanized version would be better because it would be better received and, therefore, more effective. The current antibody, developed by Dr. Cheung at Sloan-Kettering, has been in use for 21 years but is still a phase II clinical trial. As a clinical trial, the hospital can't charge for the treatment and the majority of funds raised to make the current iteration come from Fred's Team, named for the New York City Marathon founder Fred Lebow. In a perfect world, the humanized version would be available for every child battling neuroblastoma, not just those at Sloan-Kettering. It, at least, is our hope that every child can benefit from it.
Teaching yourself how to build a website from scratch with the urgency of knowing several children are in need of a humanized version of 3F8 as soon as it's available carries a certain burden. It was a stressful and time-consuming process, but a necessary one. Two of the Band of Parent members are currently dealing with relapse situations…one of whom Larry is particularly close with whose son is just shy of his fourth birthday. It is for these families that Larry spent hours and hours and even more hours putting together a website. The website is up…it's simple but hopefully effectively communicates the message. The address is http://www.bandofparents.org/.
We very slowly but surely "re-jelled" as a family. Ella got used to seeing both Liam and Mommy around and not off for days at a time. Liam got used to be away from the hospital and didn't once ask, "is tomorrow a hospital day?" And Larry and I got used to seeing each other without one of us wrapped up in caring for Liam.So now we're a few weeks into our second 90-day life. Our first one was from June – September. This one goes until December when Liam's next round of testing commences. We also found out that Liam is cleared to receive a fifth round of antibodies which is scheduled the week before Thanksgiving. A few weeks after each round of antibody treatment, a vial of Liam's blood is drawn from his arm. He now points out which vein he wants to use. The blood goes through an eight-hour test to make sure there are no signs of an antibody to the antibody. The testing always takes place on a Tuesday and it's a nerve-wracking day for us. If we don't receive a phone call by 6:30 p.m., we know Liam is cleared to receive another round of antibody. On the day of the testing, I carry my phone with me and pray it won't ring. And if it doesn't, I still call the hospital on Wednesday to ask if they tried to call me or if I really didn't hear my phone ring. It didn't ring on Tuesday and after I called the hospital on Wednesday morning, confirmed that it really didn't ring. We hope the phone doesn't ring for a long time.
Closing Note: In the time it took to write this post, the little boy just shy of his fourth birthday lost his battle to neuroblastoma and another little boy has relapsed. We need to change this. We can change this. And we have to do it...now.
