My shirt for tomorrow, October 1st (www.sillbrave.org)
As September draws to a close I’ve been fielding questions about the color gold. Should we still wear it? Should I pack it away until next September? Um…No! Keep wearing your gold, your “Follow Me” shirts, and your lemon shirts. And keep explaining to people why you wear gold. Keep telling them that childhood cancer does not get enough funding (4%? WTF?), it’s not rare (1 in 330 means there’s at least one kid at your local elementary school who’s had, has, or will have cancer), and that kids are not mini adults when it comes to cancer or cancer treatment.
So starting tomorrow, October 1st, I will be wearing gold, I will be talking about the unsettling statistics surrounding childhood cancer, I will be planning more fundraisers with the lemonade moms for childhood cancer research, and I will be loving and caring for Sam.
Sam continues to love animals, being read to, Giada de Laurentiis, watching TV, potty humor, going for walks, and eating good food.
I’m sure we were talking about farts
P.S. You can still get in on the Lemonade action by donating here.
I should be really happy right now. Thrilled. Over the moon. I just heard that Lemonade and Love for Sam has raised over $10,000 so far.
Instead I am low. Wallowing and weepy. It’s so friggin real. Sam wet his pants today. He shuffles with his left foot. He can’t lift it anymore. He’s so quiet. So zoned out.
Also, while I am grateful for the articles that were written, and the interview that will aire, because they help bring awareness to the issues around childhood cancer (see below), they also kinda throw in my face that this is really happening to us.
The article in the Santa Maria Times by Lauren Foreman about Sam was pretty good. I think it brought the right kind of attention to the lack of funding and the realities of childhood cancer for the patients and their families. There were some minor inaccuracies, but basically she got it right. You can read the article here. She also wrote an article about the fundraiser my friends have organized. Their initial goal of $2500 has been met so they raised the bar to $3000. Met that. Raised the goal yet again to $3700. If you want to make a donation to help fund research into a cure for childhood cancer please go here.
Did you know, The Many Adventures of Cow and Kid has already received an award? It’s true. Two of the stars of the show, Cow and Pig, were even on hand for a photo op.
And tonight’s dinner was Rigatoni with Vegetable Bolognese. Or as I like to call it, because I can only say, “Bolognese,” in my head, Rigatoni Baloney.
The new nighttime Sammy pee pee security system: wind chimes, baby monitor, and safety rail. Dog willing, I will walk tonight.
And Sam? Sam enjoyed the cow movie, again. The award made Sam smile. Sam had leftover Tomato-Basil Pizza for lunch and Rigatoni Baloney for dinner so he was a happy guy. And that’s all that matters.
In the last 3 days we’ve had 2 interviews with reporters from 2 different, local newspapers. I worry a lot about whether I remembered to say the things I feel are important to say: there’s not enough funding for childhood cancer research, childhood cancer isn’t as rare as you might think, and childhood cancer really sucks and is killing my kid and a lot of other people’s kids. Will the reporters, when they paraphrase get the message right? Will I sound dumb? This is about my child and my family, but it is also so much bigger than me. I have to do right by all of the children.
On a happier, less stressful note-We got to Skype with Giada de Laurentiis! John picked the teens up from school early so they could be there too, and at about 2:05 (the call was scheduled for 2:30) I took Sam to the bathroom so there wouldn’t be any awkward interruptions. So Sam’s sitting on the potty, I’m sitting on a stool in the bathroom. I brought the iPad with me-just in case. At 2:06 John and the teens walked in the door and a call came in on the iPad. I figured it was an assistant of sorts setting up the call for Giada so I didn’t worry too much that Sam was sitting on the toilet. It was her! Giada appeared on the iPad screen all casual and beautiful with sunglasses on top of her head. And Sam’s pooping. Pooping.
The teens and John and I crowded into the hallway outside the bathroom. Ben figured out why Giada couldn’t see us (I had inadvertently turned off video. Good thing, huh?), John and I switched places and he went into the bathroom with Sam, and Ben and Abby and I went to the living room to chat with Giada. She wanted to know about Sam. Not sick Sam. Sam. So I briefed her on Sam the Adventurous, Sam the Kind, Sam the Smart, Sam the Artistic, and Sam the Wise-Beyond-His-Years.
Sam and John joined us moments later and we talked about food, cooking, the pleasure of using a good knife, her children’s books, which of her recipes we’d tried, and the difficulties of cooking with just one vegetarian in the house (Ben). She was a little shocked at Sam’s use of ranch dressing as a pizza sauce, but encouraged us to experiment a little-“Maybe try a little ranch mixed in with the marinara sauce to make it creamy.” She also urged us to try the recipes included in the children’s books (which we are really enjoying, by the way). We signed off with a promise to send pictures of the pizza we would make from the recipe in the first book “Recipe for Adventure: Naples.”
Zia’s Tomato-Basil Pizza
Today was the premier showing of “The Many Adventures of Cow and Kid,” and animated short produced by many generous hands for Sam. It’s the cartoon version of a game Sam played with John from the time he was 2. Sam laughed hard. It was just the reaction we hoped for. Because of time constraints we were only able to include a couple of cow stories. There are probably a dozen more scenes that John and Sam acted out with Sam’s plastic cow and pig, Legos, and Lincoln Logs, but that would’ve taken years.
Sam fell last night. That’s why there was no post.
John found Sam where my running shoes are
I put him to bed and went out for my evening walk with Ben while John stayed home. About half an hour after I finished reading (one of Giada’s new children’s stories) Sam needed to go pee. Well, if you’ve been paying attention you know Sam doesn’t talk much, and when he does its never above a whisper. So 20 feet away in the master bedroom John couldn’t hear Sam whispering, “I have to go pee,” and Sam proceeded to try and get himself out of bed and to the bathroom. He made it as far as the edge of the bed and fell. John found him on the floor next to his bed, stunned and unable to get himself up. Abby called me, but I had forgotten to change my ringer from vibrate to ring so I didn’t notice. Fortunately I was almost home anyway, and arrived home a few minutes after the accident. Sam seems to be fine. He says nothing hurts and there are no bruises.
This changes things. It changes how we supervise Sam after he goes to bed. Ears are not enough. For last night my solution was to stay with him in his room. That means I went to bed at about 7:40. That means tonight I have to go to bed at 7-when he does. Unless we can come up with something else: a safety rail? That’ll certainly slow him down, but we still won’t hear him so he’ll wet the bed. A baby monitor? You know I think I dropped ours off at Goodwill just very recently. Why did I do that?
Most of Sam’s meds and vitamins
So you see we keep changing and adapting our lifestyle with every new wrench cancer throws in the works. First it was a medication schedule and Sam learned to take pills. We learned to watch for signs of infection and low platelet counts. We learned how to explain to each new nurse how best to access Sam’s port. We learned to apply numbing cream and press-n-seal to the port site prior to access. We learned to nag Sam about drinking water. We learned to stay away from people and situations where he could be exposed to viruses he couldn’t fight off. I learned to write really good sub and emergency plans for Sam’s scheduled treatment days and unscheduled visits to the ER. We learned to read the printout from the lab detailing Sam’s blood counts. I’ve learned to count his respirations and heartbeat to gauge if his system is under too much stress.
And then there’s equipment-we didn’t know how to open or fold up a wheelchair, now we do. I installed rails on the toilet. My friend, Linda, gave us a gait belt-at least I think that’s what she called it. It gives us a secure place to hold Sam when he walks, in case he falls.
These are not things I wanted to learn.
We’ve only been at this for one year. Sam’s only had one surgery. This is probably peanuts compared to what some families go through.
Since the most recent edition of the poorly fitting suit, not much has changed. We increased Sam’s steroids a bit to see if we could get him back a little and I think it kinda worked. He’s a little more interested in us again, as evidenced by his returned desire to pick up kids from school and go out for frozen yogurt. He’s a little more steady when standing, and can do a little more of the work when he walks.
On the downside, there were a couple of bathroom accidents today. That’s the nice way to say it, “bathroom.” But see one of the accidents happened in the bed, so yeah, he wet the bed. Are diapers next?
He still laughs at our jokes. Potty humor works best. Today one of our visitors elicited a laugh with armpit farts. Haven’t heard or seen that since about 1980.
It’s been weeks since he said, “I love you.”
Have you heard about Dance in Gold? Well, you missed it. it was today. I hear there was a great turn out and almost $800 was raised for Teddy Bear Cancer Foundation. The amazing team of Danya Nunley, Stephen Patrick, Todd LeMay, Victoria Chase, and Jesse Marquez decorated the room, alerted the media, and taught the class. Danya’s daughter, Eliana, a fifth grader and cancer survivor, took the lead for a song. She’s one talented and powerful child. Not surprising, knowing her momma.
Have you heard about Lemonade and Love for Sam? It’s a fundraising event for pediatric cancer research happening this Friday at our neighborhood school-the school Sam attended. It’s impressive what this group of moms has put together. They’re not just selling lemonade. There will also be bracelets, tshirts, baked goods, and a raffle for gift cards. They are working their butts off, so if you’re in the area, please come. If you’re not local, donate here.
So here’s the latest. Sam can barely walk now, and that’s with me or John helping him. His left leg is just not doing any work. He absolutely cannot stand unless we are holding him up.
Again today he did not want to bring the teens to school or pick them up. He spent more time than usual sleepy and resting on the couch. He’s not really sleeping much throughout the day, but he is very out of it and not very interested in TV, cards, or dominoes.
He still wants to eat, but this is definitely a new low.
We continue to have visitors, but I caution you that we may cancel on you at the last minute.
Today marks one year since an adult saw him having a seizure and thus began our quest for treatment. Friday will mark one year since diagnosis.
Every time there’s been bad news about Sam, whether delivered by an oncologist or something we observe ourselves, John uses the analogy that it’s just another poorly fitting suit; one we will adapt to within a few days. And you know, so far he’s right. Even when the news was devastating, insurmountable, I was stunned to come out the other side and find I could eat, sleep, and function.
Today’s news is just one in series of minor downhill slips and slides we’ve observed. Sam was still awake all day. He ate his meals and snacks. He made it to the bathroom every time he needed to go; no accidents. But he needed more help to stand and walk. He fell once today. And he just seems a little further away. A little quieter; a little less interested in the goings on. He didn’t want to bring the teens to school OR pick them up. That’s not good.
On the plus side, I muttered something today in Sam’s presence about my back hurting (you know that barometer for how Sam’s doing), and he whispered something in response. I immediately thought he was trying to tell me something like, “I don’t feel good,” or “My head hurts.” So I leaned in closer and asked him to repeat what he said. After about the third try I heard it: “When does it hurt?” He was worried about me. He wanted to know what I was doing that was hurting my back. I laughed it off to cover the tears welling up, and told him I needed to stop slouching.