At the beginning, they used words like "road map" and "time table." Sure, they told us that "anything can happen" and "be prepared to be flexible." They told us that. And we were. There were hiccups in our early road (um, c.diff anyone?) but most of the time...things went according to The Plan. I like that. I'm an orderly sort of gal. I like having my ducks in a row.
Yeah, it just doesn't seem to be working that way. It's all too....off the beaten path. Remember how I said I wanted ordinary and run-of-the-mill cancer? Sigh.
We knew that Sam would be starting a new form of chemo....this week. Due to the holiday weekend, I wasn't sure exactly which day we would start. It is slightly different and required a little insurance pre-authorization. We're not concerned about the insurance, it was the holiday that got in the way a little bit. So Sam and I arrived this morning, knowing that we were there for labs and probably blood products (like platelets) but not expecting chemo. I was, however, expecting answers.
Guess what? (I'm sure you have guessed from the start of this post...) No answers. "Wednesday, we think. Someone will call you." Hmm...I guess I won't be making any plans.
On the upside, Sam didn't need any platelets! So after just about an hour of waiting for the labs, we were dismissed. Hooray! We headed over to the Milwaukee Public Museum for a few minutes with the butterflies....and then Sam went to Yoga Camp. Yep, you read that right -- I heard about a Yoga Camp for 6-12 year olds at the yoga studio that I've been visiting, and I thought it sounded just right for my little flexible gymnast. And was he ever excited. (It also helped that at the time, there were only 4 kids signed up so I knew that his exposure would be minimal, and the doctor said yes!) He loved it. It's only 2 hours so I sat outside and read a book. He can't wait to go back tomorrow! Who's complaining?
|Why yes, the Tatelli family DID find this amazing shirt for my little Ninja -- he put it on immediately and wore it to YOGA. He will actually pull it over his head for you but I thought this face was too cute.|
Ronald McDonald House of Milwaukee*. What a phenomenal blessing that this place exists. (And doesn't it help that Sam regularly eats those nuggets and fish sandwiches!?) For the time being, the Golden Arches Hotel (as we're calling it -- Sam named it) will be our new home. That doesn't mean that I'm not headed to Maison de Casa House tomorrow morning for coffee, mind you! (Also there are some logistics with Yael's camp, so she might keep staying with Bubbie and Zeyde for a little while, and we plan to visit regularly...like tomorrow morning!) This couldn't have come at a better time. We're still totally unclear as to whether the chemo will be administered daily in clinic or visiting nurse, how the weekend will work, and, of course, what its effects on Sam will be. So being close to the hospital is a necessity as well as a blessing.
In the future, I will try to share more about what life at the Golden Arches Hotel will be like. This is the communal kitchen that is right outside our room -- we share the space with the other long-term families, but we had it all to ourselves for game-and-snack-time before bed tonight.
(I didn't even tell you about our little visit to OSRUI for Shabbat lunch, or the time we spent with our friends at their rustic cabin in the mosquito-infested woods of Kettle Moraine, or the visitors swooping through Mequon who came and gave us love, or just the day-to-day of park, zoo, snacks, naps, etc. You'll forgive me...)
So we continue on this uncertain path. I'm trying not to scream in fear and frustration -- why are we waiting!? Each day that it doesn't start is another day for the leukemia to gain a stronger foothold. And each day that it doesn't start is another day longer until he can be in remission. But I also know that our doctors are wise. They are patient -- far more patient than I am. They know that these few days don't matter as long as the treatment is the right one for Sam. So I console myself and soothe my frustration by knowing that they are working tirelessly on behalf of my little boy and my family...that the doctors too are losing sleep with worry for my son. And I breathe and hug and hold and trust and and love and pray. And that's all we've got for now.
Signing off from our snug little den in the Golden Arches Hotel....with love.
*People are always asking what they can do to help us. When you help the organizations that help us, it means so much to us. RMH has scads of volunteers and they give us food and all sorts of stuff. Our RMH has a wish list, and wherever you are, I'm sure there's one near you. Even if you don't help out our House, know that families just like us are receiving amazing love and care at RMHs near you. I have suggested to so many families that they sponsor a meal at a RMH at their destination-event; it is so humbling and awe-inspiring to be the recipient of such generosity as well.