Madeline and her Dad have a special game they like to play each morning called “Dragon Breath”. How to play: take turns treating your opponent as a breathalyzer by blowing your high-octane morning breath in the general direction of their olfactory nerve. Rules: 1) You cannot brush your teeth before playing. 2) You CAN fuel up by drinking coffee or having some other smelly breakfast food. Object of the game: Be the one with the smelliest breath to win. It’s good for multiple players, ages 4 and up. Good, clean fun (?) for everyone.
It almost makes me wish there were more breakfast foods with garlic as a main ingredient. I usually don’t play “Dragon Breath” with Matt and Madeline, but I might if I ate, say, garlic frosted corn flakes. Or powdered garlic donuts. Or French toast stuffed with garlic. Okay, I’m grossing myself out (which is pretty darn difficult to do).
I do love garlic, though. Spicy garlic chicken, mmmm. Oven-roasted garlic on melba toast crackers, double mmmmm. Flat bread pizza with mozzerella, basil, tomatoes and slivers of garlic, supersize mmmmm. I always have bulbs of garlic on hand in my kitchen. It’s good on everything. Well, except the majority of breakfast foods.
Not only is garlic delicious, but it wards off evil, too. I’ve used it in many “bad boyfriend” scenarios. It’s usually my last resort, but if a boy is particularly bad, I’ve been known to pull out my garlic necklace and wear it until the bad boyfriend returns to his casket. Or walks out into the sunlight and bursts into flames. Whichever comes firsts.
I’m wondering if I should make Ben wear a garland of garlic in his fight against cancer? It couldn’t hurt, right? The poor kid goes through so much already, I don’t want to further punish his self-esteem by requiring him to wear bulbs of garlic around his neck. I guess I’ll pass on that notion for now. But if it ever gets to that point where researchers say that garlic cures cancer, well, we’ll play a round of “Dragon Breath” after ingesting copious amounts of garlic and making Ben the breathalyzer. I’m sure he’ll be thrilled.
I’m at the point where I’m not telling him what’s next in treatment. It’s not that I’m trying to hide anything from him, it’s just that I’m tired of telling him one thing and then having to change the plans. It’s not worth stressing him out until we know the exact facts and when they are going to occur, which is often just seconds before a procedure actually takes place. This last trip to New York was so incredibly frustrating that I’m still trying to decompress even though we’ve been back in Colorado for more than 72 hours.
I won’t go into all the details for fear of boring the pants off of you – or frustrating you beyond belief – but the basic overview is as follows: Ben had surgery with the famed Dr. LaQuaglia at Memorial Sloan Kettering 10 days ago. While we don’t have the final pathology reports back yet, Dr. LaQuaglia believes that what he removed was scar tissue. Whew!
Here’s where it gets a little more confusing. Dr. Kramer, Ben’s oncologist, stopped by right before he was discharged to let us know what would come next. She mentioned something about chemo in Denver with a stem-cell rescue and then return back to NYC in a couple of weeks to repeat scans before starting the antibody therapy. We knew he would do the round of chemo, but we didn’t know if it would be in Denver or in NYC. And this was the first I’d heard about a stem-cell rescue. Dr. Kramer was talking about collecting stem-cells from Ben (via a catheter in his neck!) but I told her that I was confident that Ohio State still had stem-cells from his 2004 collection that we could use. She asked if we could verify that and Matt (via speaker phone) said that he would contact Ohio for a transfer. I have to give props to Matt here… he did a great job of coordinating the stem-cell verification and transfer.
The rest is a bunch of back and forth, too many cooks spoiling the pot, mass confusion, total frustration, desire to surrender but knowing that was not an option, culminating in the parents knowing way more than the physicians. I’ll say this now: WE NEED A COORDINATOR WHO KNOWS EVERY DETAIL OF BEN’S TREATMENT PLAN. While Matt and I know enough to muddle through, we are NOT doctors. We keep getting new information thrown at us from so many different outlets. It’s a “hurry up and wait” scenario and we’re juggling between three different facilities in Ohio, Denver, and New York. CRAZY!
I’m going to start throwing bulbs of garlic at these people.
So, all I know now is not much more than I knew several days ago. I’m taking Ben to Denver Children’s today for lab work. Columbus Children’s is working on sending Ben’s stem-cells to Denver for the chemo/stem-cell rescue procedure that is planned for sometime in the supposed near future. We’re scheduled to go back to NYC on May 13-14 for scans. And that’s all I know.
Until then, I’m gearing up for the ultimate round of “Dragon Breath” tonight. I’m thinking an Italian menu – garlic bread, homemade sauce with loads of garlic, with a side of garlic and extra garlic… might as well celebrate today to its fullest extent.