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Friday, October 19, 2007

Living life 90 days at a time.

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 na├»ve 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.

Monday, October 15, 2007

Liam the Pill Popper

NOTE: I’m backtracking a little. This is a post that has been in progress for a while. I wasn’t going to post it, but then heard about a few children who have had trouble taking pills and I thought it might be helpful to see how we approached the challenge.

It’s always strange going back to the hospital when I haven’t been there for a while. Between August 24th and September 11th, we’ve only been (I think) twice. But I might be wrong…I’m so used to being at the hospital that sometimes I forget about a quick trip to pick up syringes or a Tiffany-sized box of medicine that costs a few thousand dollars. When I pass through the entrance which typically is flanked with smokers (including some patients in hospital gowns and IV poles) puffing away, I can feel myself going into “hospital mode.” Hospital mode is a mixture of steely reserve, endless patience for Liam’s never-ending “why” questions, a slick coating of “I can handle this” to try and let any surprise thrown at me slide down between my shoulder blades without bothering me (at least as far as Liam can see), and a certain amount of trepidation of what I might find. My fear isn’t necessarily related to Liam, I worry about the other brave children we have met along the way. I never want to see or hear that someone has had a setback, but unfortunately that’s quite often the reality.

During my writing hiatus while I was wrestling with the relapse and hospice gremlins, I didn’t mention how Liam learned how to take pills. What I thought was going to be an agonizing experience in frustration was an unbelievably easy lesson.

The thought of having to teach Liam how to swallow the three, fairly large Accutane pills he has to take twice a day for two weeks with a two week break has weighed heavily on my mind since I found out that it was part of the protocol he would be following. I thought about it a lot and kept wondering how I was going to teach my barely three-year old little boy the concept of swallowing a pill without biting it and tasting the nasty contents or throwing up after trying to choke it down. He already was having an extremely difficult time not vomiting when taking medicines that taste “yucky.” How in the world was this new challenge going to be conquered? I’ve known how important Accutane is at attacking immature cancer cells, so the pressure to get Liam on the pill-popping band wagon was extremely important. And the other option out there – drawing out the liquid with a syringe, transferring the contents to another container, and then getting Liam to drink it - wasn’t ideal. As one of the nurse practioners told me, you never get the same amount of medicine and I want every drop of Accutane in him.

About two months before the Accutane therapy was set to commence, I started having Liam be a part of my daily pill-taking regiment. I would hand him the two pills I take every day, allow him to place each pill on my tongue, and take a very long drink, open up my mouth and let him see that it was gone. If he didn’t place the pill in the right place on my tongue, I would have him redo it. If he tried to put it on the tip of my tongue, I would explain why that wouldn’t work. When he would ask me why I drank so much after swallowing a pill, I’d explain how it made the pill go straight down into my belly. Every day, Liam would remind me it was time to take my pills. He rather enjoyed the concept of mommy having to do something medical related. But helping mom is still a long way from him having to take a pill. The prescription calls for two pills in the morning and one in the evening. The pills are egg-shaped and not too big, but definitely not the smallest pill I’ve seen. Accutane comes with all kinds of warnings and its own set of future worries. It also can cause what has been described as “horrid” side effects ranging from skin sloughing off like a lizard and causing painful bleeding blisters, to mood swings so dramatic they leave parents wondering what happened to their child. The drug is closely monitored by the government and parents have to sign a multi-page contract that left me with the feeling that I was at a house closing, not treating my son’s cancer.

On the morning he was scheduled to begin taking Accutane, he had a bone marrow test which is done under anesthesia. Great. In addition to having to teach him how to take a pill, it was going to have to be done while he was anesthesia “drunk.” Off to Sloan-Kettering we went in the morning for the bone marrow extraction from four sites in his pelvis. And then back to the apartment. I kept looking at my watch to see morning slipping away while Liam slept off the effects of anesthesia. Finally, I decided to wake him up which can always be a risky act when he’s in a drug-induced slumber. I apprehensively woke him up. He didn’t immediately start crying. (OK – Good sign.) And then I said, “Honey – I need to talk with you about something,” which is the way I broach any new topic that needs a little more explanation. “Sure Mommy, what do you want to talk about?” It’s our little routine. He knows that if I tell him we have to talk, that it’s something that requires his full 3-year old attention. I explained in my most optimistic-sounding voice that today was a very big day for him. Today was the day he too would have some pills to take. He asked what the pills were. I told him vitamin A. (Not a lie – they really are high doses of vitamin A. He asked why he had to take them. I told him that vitamins helped make little boys and girls grow up to be big and strong. (Not a lie – Accutane will help him grow up to be big and strong.) And then I explained how this was no big deal since he already knew how to take pills because he had been helping mommy. He looked very earnest, stayed quiet and furrowed his brow. He examined the pills and wanted to know why they were squishy as he tried to pop one. OK – Another good learning opportunity. I reminded him how some medicines taste really icky and sometimes make him throw up. When medicine is in a pill, you don’t have to taste it which is a really good thing. He quietly sat considering what I was saying and then recounted how “one time we had to go to the hospital” to take some medicine because he threw up after taking it (the whole iodine experience). When he goes into his recounting of a memory seared in his mind, he talks about every detail. It always amazes and frightens me how much he remembers. He remembered the team of doctors and nurses kneeling in front of his stroller encouraging him to take the iodine drops. He recalled how the nurse with the long hair mixed the icky tasting medicine with cherry syrup to make it taste better. He remembered that everyone clapped for him. He remembered that he was wearing his jammies. He remembered that it was very late at night. He remembered that it still didn’t taste good but that he took it all. And then he cautiously took one of the pills, placed it on his tongue, took a giant sip of milk, and gagged a little bit while it was going down. I cheered. He fretted about gagging and worried he was going to throw up. I told him to drink, drink, drink, drink, drink to make sure it goes down. He took the second pill; put it in his mouth, drank and drank and drank and drank until he couldn’t drink any more; handed me the cup and said, “Done!” And that’s how Liam learned how to take pills. Now, he even takes both pills at the same time. A week later I introduced a new pill to the mix, Bactrim. It’s one we had to stop taking the liquid form of because he would throw up. For months he has been receiving it via IV every two weeks. It’s not an easy pill to take because it’s a tablet that tastes yucky once it touches your tongue. But, he’s figured out how to do it and with that…the hospital leash loosens just a little bit more. When he asked why he had to take this one, the explanation was a little different, “Because Dr. Kushner loves you and wants to see you grow up to be a big boy.” His response was, “Oh, OK.”

And once again, we find ourselves incredibly fortunate that Liam has had no side effects other than a little bit of dry skin on his nose while taking Accutane. We are so, so, so grateful and take nothing for granted. Nothing.

Monday, October 1, 2007

Monday October 1st

Liam on his way to the beach

A smile is such a precious gift.

Liam and Daddy

Liam loves Ella and Ella adores Liam.
And we love seeing our children together.


There is nothing quite so sweet as a day at the beach.