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.