Monday, September 30, 2013

Gold is always in fashion

My shirt for tomorrow, October 1st (
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.

Friday, September 27, 2013


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. 

(And it's not over yet. Donations are being accepted for this event through September 30th. Here's the link:

Thursday, September 26, 2013

It was a newsy kinda day.

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.

Wednesday, September 25, 2013

So many wishes

We've had a busy couple of days.

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. 

May 2013
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.
May 2013

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. 

Tuesday, September 24, 2013

Bend like the willow

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.

Sunday, September 22, 2013

A non-update update, some gratitude, and a shameless plug.

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.

Friday, September 20, 2013

Shabbat Shalom

Not a bad day in the Hospice Heights neighborhood of Cancerland. 

A little music.

A few friends.

Some good food.

A Spongebob pillow came in the mail.

And Sam wanted to go with me to pick up the teens from school.

Thursday, September 19, 2013


Dear teachers,

This is what Ben and Abby do when they skip your class:

Mrs. Jeffers
Sam was quite alert this evening and insisted on staying awake to watch the arrival of this:

Wednesday, September 18, 2013

This suit sucks.

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. 

Tuesday, September 17, 2013

Time for another ill-fitting suit.

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.

That was so Sam. He's still here.

Monday, September 16, 2013

You might say I'm all over the place

Wow. There's so much I could say tonight.

May 2013
I could talk about how Sam had a nice day and is holding steady at barely walking-talking-but-at-least-he's-awake-all-day. We went out to the Avila beachfront and walked about halfway down the pier. Sam didn't mind the bump-bump-bump of his wheelchair on the planks. He had the BEST. HAIRCUT. EVER. from my friend Erin at Jassi and Christa's Salon in Shell Beach, and looks more like Original Sam. We picked up the teens at the high school and he was so happy to see them. Friends came over to play Uno, and I think the game was too complicated for him or the popcorn was too compelling because I had to play for him. We won. My friend Gina, a make-up artist from New York City, sent a flamingo for Sammy and the prettiest make-up for me and Abby. And once again, we look so good on paper.


I could also mention that people are still telling me that if Sam just ate (you fill in the blank), or went to Dr. So and So, that we could cure his cancer. Really? I never though of that. It's not like he wasn't treated at one of the top 5 children's hospitals in the country. And certainly his neuro oncologist wasn't part of a nationwide network of experts, or was he? This is what I like to call, "Blaming the Victim." Or more accurately, "Blaming the Parents."

Or we could discuss how intelligent and successful people are still under the impression that the American Cancer Society donates a good portion of it's money to researching childhood cancers. The portion of the pie allotted to children is 5%. You can read about it on their own website here.

Sunday, September 15, 2013

Life's pretty simple really

And so we keep doing our best to live. 

We enjoyed the sun in the backyard, and later in the front yard. 

Friends came to visit and read a story about a farting dog to Sam, eliciting laughter as you would expect from an 8-year-old boy.
Eliana picked the perfect book

Then we stopped by the candy store to pick up supplies for a walk around the campground and lagoon in Oceano.

After dinner we played two rousing hands of dominoes. I don't have to tell you won, do I?

My friends are doing their part to raise awareness about childhood cancer. The latest endeavor is Dance in Gold by Danya Nunley and others at Kennedy Club Fitness in Arroyo Grande. It's one week from today, Sunday, September 22 at 3pm. It's free. Wear gold. Click the link for more info and to join the Facebook event (although that's not necessary).

Saturday, September 14, 2013


It's been a quiet last few days at the Jeffers' house.

Sam is much the same-not interacting much, speaking very little, needing lots of help to ambulate. At least we can still make him laugh. Generally anything to do with poop, pee, farts, burps, or vomit gets a good belly laugh. He's awake all day, but does get quite sleepy and spacey at times.

What's quieter than usual is the dog. Chance is not well. On Thursday he didn't bark once or get up to see who was visiting. He didn't even ask me to pet him.  Now he's moving around a bit more, he barked a little today, and his appetite is fine. Right now he's up and nudging me to pet him. He's kind of moving like he did before we had him on medication for Myasthenia Gravis-he's generally unsteady, slips around even on surfaces where he has traction, and his hindquarters give out sometimes.  I haven't walked him since Wednesday. Initially I thought he was suffering from an upset stomach because on Tuesday when we had all the friends over, everyone ate apples and Chance ate all the cores-probably about 10. He loves apples. Pulls them off the tree if they're low enough. All day Wednesday he had the runs. I didn't notice until after he had walked with Susan for over an hour. And that evening we did our usual 3 miles. I'm wondering if the combination of the runs, the cyanide in apple seeds, and his lack of eating Thursday and Friday (he takes his meds with his food)  means he just needs to rest and build up the medication in his system again. I hope. If he doesn't perk up tomorrow it's back to Dr. Joel he goes.I think this may be Chance's 5th chance. The pound sure picked a good name for him.

I've been borrowing Amanda's dog since Wednesday, but tonight the family was gone, so no dog for me, and the teens were at temple. So no teens, no dog, no Amanda, means I walked alone. It was rough at first, uncomfortable to have no distractions from my dark thoughts. After a while, when I had cried it out, it was kind of nice to just let my mind wander.

By they way, the locking trash can arrived.

Thursday, September 12, 2013

Two boys

I'm afraid not to write a post. I'm afraid you all will freak out if I miss a night and assume something really bad happened.

Well, what if I just don't feel like writing about Sam's day? What if it was pretty much the same as yesterday, which means that it sucked, and I feel sad? I just feel so overwhelmingly sad, because although Sam is still here, he's not. And soon he won't be here. What then? I miss my bright and shining boy. I miss the boy who ran instead of walked. 
Sam at Purim 2011

At the same time, I can't remember him. I can look at pictures and I know that was him, but my memories are gone. I've been promised that they will come back. I guess I have that to look forward to.
Sam the builder at Bubbe and Poppy's

Meanwhile I love this new boy too. I know I've said that before, but I want to be sure it's understood that if we had some sort of miracle and Sam was saved but not restored to his former shining self I would be so grateful. I would take care of this new boy forever. He is precious to me too.
Sam with Beary and Sully

Wednesday, September 11, 2013


Sam's holding steady for the moment at his latest low-the one that hurt my back. My back is better today so I must be getting stronger. We had a day full of visitors, nicely spread out throughout the day. John, Sam, and I picked up the teens from school at lunch, went through the drive-through at Taco Bell (I know, ew), and spent some time together at home.

People are always asking me how I'm doing. I say, "I'm fine." If I'm comfortable with you, I'll accompany that with an eye roll, because I know you know the true meaning of, "Fine."
People also ask if I am sleeping. Aside from waking up with Sam a couple of times a night to help him get to the bathroom, I sleep, and here's how. I escape. My current escape is anything I can get my hands on about long-distance hiking or running. These are some of the players:
I Promise Not to SufferBorn to RunFeet in the Clouds: A Tale of Fell-Running and Obsession

Tuesday, September 10, 2013

It's the Simplest Things

Sam had the most wonderful day today. It's not about an improvement in his symptoms. There's been no miracle as far his cancer. In fact, if I gauge his days by how my back feels, then I'd have to say today he needed more help than usual in rising from his chair, walking, getting out of and into bed, and getting into and out of the car.

This is about his friends. We're talking 8-year-olds here. Now my friends have been visiting since we've been mostly home-bound. I've known from the beginning (of the end) that Sam enjoyed visitors and that I needed them. Since early June there have been many visits from adults, and just a smattering from Sam's friends. I didn't think it mattered to him because he doesn't interact. He hardly talks. I've told my friends with kids Sam's age (or near it) that we want them to visit, and some of them have, but not much. Now I don't fault my friends. People are busy, and maybe Sam's condition is scary, and maybe for kids who didn't really know him before, it's a little boring. 

It never occurred to me to reach out to the parents of Sam's friends and ask them to visit. I assumed (you know what happens when you do that) that his friends didn't want to come hang out with the sick kid for all the reasons I listed above (they're busy or afraid, and Sam doesn't really do anything so what would they do?). Last week a mom of one of Sam's friends called me. I can't remember what the purpose of her call was, or what we talked about, but I do remember that I just kind threw out there that what Sam really needs is for friends to come visit. She didn't immediately jump on the opportunity, but a few days later floored me by asking in a message on Facebook if she could bring her daughter, and 2 other little classmates of Sam, and their mothers.

Today was play-date day. I was nervous. What if the kids felt shy and uncomfortable? What if it was awkward? What if Sam was tired and quiet, and the kids were bored and never wanted to come back again? 

It. Was. Great. Sam happened to be in the bathroom when they arrived. Everyone sat down (okay, a little awkwardly) in the living room and waited for Sammy. When he walked down the hall and saw his old pals...oh, the look on his face. He doesn't smile like he used to. He can't. But he smiled, and it was beautiful and real. We chatted for a bit, and then I invited the kids to join Sam in a game of dominoes. I think it's the simplest game on the planet. Even easier than Candyland. Although I had to offer Sam a lot of help to play, he played. And those kids were rockstars. They were natural, and they were patient, but they did not let Sam win. We played 2 games, we ate a snack, and then Sam wanted to play another game. At that point I offered Sam an out in case he was tired and wanted the visit to be over. He's such a sweet kid he would never suggest that himself. When I asked if he wanted his friends to leave, he said, "No." He wanted them to stay, so I suggested he show them the backyard and out we went. We sat around the (unlit) fire pit, and I picked apples for everyone who wanted one. The kids talked, the moms talked (and these are some of the lemonade stand moms, by the way. So they deserve high-fives. Not only are they organizing that awesome fundraiser for childhood cancer research, but they raised great kids.), and Sam sat and ate his apple. And no, he didn't interact much with his friends, but I could tell that he was so happy that they were there.
This is me when I realized tonight that I did not take A. SINGLE. PICTURE.

Monday, September 9, 2013

WTF, American Cancer Society?

After yesterday's exhausting walk at Oso Flaco we decided to stay home (mostly) today.

Of course he has to go with me when I bring Ben and Abby to school-he adores them so. And that gives John 30 minutes of quiet time to work (he works at home. That can be challenging, especially when he's trying to participate in a conference call and the idiot dog WON'T. STOP. BARKING.).

There were the usual visitors: My mom, AKA Bubbe, (dish washer, hedgehog mender, pooper scooper), and Mrs. Harlan (dog walker and banana pudding chef). Today Sam and I taught Bubbe to play dominoes. Sam still kinda plays his own dominoes. I have to help sometimes, principally if there's a rematch. As for Mrs. H., rather than bringing banana pudding today, she brought the ingredients. So this afternoon Sam and I made banana pudding. I almost forgot the bananas. That got a laugh.

We had an extra special visitor today. Lisa, our counselor from Camp Reach for the Stars, drove all the way from Ventura along with her daughter to see Sam and everybody. Aside from the tragedy that Sam does not remember her, we had a lovely visit. Here's another tragedy: The American Cancer Society pulled their funding and administrative support from both the local camps. The "North" camp will go on thanks to a local oncologist and nurse (Jim and Jessica, a husband-wife team) who are starting a foundation to support it. The "South" camp, which was located in Ojai, is no more. The camps were a source of comfort and normalcy for so many families from Ventura to San Luis Obispo County. It makes no sense that ACS would not continue to support this service. When we spent the weekend in Cambria we were surprised and pleased to learn that much of what we enjoyed was donated-the food, the activities, the personnel were all volunteers. The costs to ACS were minimal, so what gives? Here's Jonathan Agin's take.

Last night I mentioned that some Grover Heights moms were getting together and organizing a fundraiser for the broader purpose of funding research. I provided a link to the Facebook event page, but not everyone uses Facebook so here's a link to the event page on the Alex's Lemonade Stand site:  Lemonade and Love for Sam. This will give you details on how to attend the event or donate. If you are a Facebook user please go to the fundraiser's community page ( and like it so that you can get updates, and join the event (

Sunday, September 8, 2013

Love and lemonade

What a crappy day. I can sense that things are falling apart, and that just makes me feel so sad. How is it possible for something that is already so fragile, and already clearly not going well, to fall apart?

The thing that I noticed today is that Sam has started to repeat words and phrases several times. Sometimes he's talking, saying the same thing over and over, but he's not talking to me-not trying to communicate. This repetitive, whispered speech gives me a cold feeling just in the center of my body. You know that feeling you get when you get bad news, but before you really react? It's like that. Sam's giving me bad news. I don't like it.

If I just report to you what he did today, you'll think, "That's awesome, " or "What a great day." We look so good on paper.

We did have a lovely walk at Oso Flaco (yeah, that's Skinny Bear) Lake and boardwalk. At the turn-around (1.5 miles) Sam requested to get out of his chair and walk. Now that's a great thing because 1-Shows he has drive still, and 2-His butt has about a two mile limit in the wheelchair so a 3 mile walk means 1 mile of discomfort for him. He walked a long way. We were joined by our sometimes-neighbors, Jessica and Scott, who are kind, warm, and genuine (and Jessica's an awesome cook. She almost always has a meal to share.). Wish they lived here full time.We went to Starbuck's afterwards, and Sam enjoyed the cake pops more than the hot cocoa, so much so that he ate Abby's too. He laughed at something funny Jessica said. He's still here.

Maybe he was just pooped out by our outing and tomorrow will be better. That's what John says. Interesting that whenever I am down he seems to be up, and vice versa. I don't know how we'll manage if we both happen to be down at the same time.

As a result of my post about the trash hound, Chance, two friends tried to buy us a new trash can. People are so ready to jump in and help. We already ordered a trash can with a locking lid so we're covered there. Any money you were thinking of spending on trash cans, please donate to help fund research. Here's another way to help: Our friends are organizing an Alex's Lemonade Stand fundraiser. This is not a fundraiser for the Jeffers, but for that something much bigger-research for a cure.

Saturday, September 7, 2013

This shit never moves in a straight line, does it?

Sam bounced back ever so infinitesimally.

He was up at 6am, asking for food every 5 minutes. Okay, I exaggerate, he can't ask for food every 5 minutes because much of that time he's eating. He will ask for a snack within 5 minutes of finishing one though. That was today's pattern.

After a short morning nap he went with me and Abby to Target (And I just realized, I forgot to look for a dog-proof trash can. Dammit).

He did not poop or pee his pants once today.

We picked up burgers and fries from Sylvester's (Yes, Sylvester's of Big, Hot, and Juicy fame).

He chose to watch, "Are We There Yet," for movie night. He did not watch the whole movie, but paid attention enough to catch some funny parts and he laughed.

He stayed up until 7pm.

And that is a good day in Cancerland.

Friday, September 6, 2013

Is it all downhill from here?

Looks like we're heading slightly downhill. Again. Nothing major. Sam still walks with a spotter, stays awake most of the day, enjoys eating, wants to hang out in the kitchen when I cook, and usually makes it to the bathroom. Yesterday and today he's seemed a little more spacey, he talks even less than before, and goes to sleep a little earlier and sleeps a little later. It's a little change I don't want to see, it means he's slipped away from us a bit more.

Earlier this week we enjoyed a visit from Chris Beland and friends. Chris is a musician and he was asked by my new friend Heather to write a song for Sammy using as inspiration a poem she wrote about Sam, and his love of cooking and his animals (don't call them stuffed). Chris and Heather came to our house with 2 musician friends and a videographer to present the song on Erev Rosh Hashanah. The song is sweet and beautiful and totally Sam. Go have a listen: Rocket Ship

Thursday night we got flocked!

Today Sam enjoyed a visit with Mrs. Hickey, who delivered Nanu eggs, played dominos, rode with me to the high school to pick up the teens, and made applesauce with Bubbe. We had Giada's Vegetarian Lasagna (p. 94, Everyday Italian) for dinner.

Speaking of Giada, it seems I have friends with influence. We have had 3 separate offers of signed copies of Giada's new children's books from people who have been able to get in touch with Giada's publicist or agent. Fabulous work, Team Sammy. Autographed books will be on their way soon!

Finally, thanks to those of you who have been posting your miles and hours of exercise for Sam. Keep them coming! There are a few places to post: Sammy Rulz, Cancer Droolz, Run for the White House for Childhood Cancer Awareness-Page, and Run for the White House for Childhood Cancer Awareness-Event. The event might be officially over, but cancer hasn't stopped so why should we? Go check it out!
by Mari Robeson

Thursday, September 5, 2013

Is your state golden?

September is Childhood Cancer Awareness Month. That's why I posted this link about what you can do to support childhood cancer. The color of Childhood Cancer Awareness happens to be gold, so that's why my friends decided to change their porch lights to gold (or yellow-ever seen a gold bulb?), and I decided to promote the idea using a Facebook event. That's also why you'll see me and my daughter, Abby, wearing something gold every day this month (she even made gold bows and passed them out to her friends, and my cousin the high school English teacher). Every time someone comments on Abby's gold clothing or accessories she explains why she is wearing gold. She is spreading awareness, kid by kid. And she was so wise to point out that gold is a way better color than pink or purple because people (especially girls) always wear pink and purple. That gets no attention. But gold is, gold. Who wears gold to school? To the store? For a walk on the beach? Smart girl.

The President of the United States recently signed a proclamation declaring September Childhood Cancer Awareness month. 35 states have signed proclamations, and so have several cities (including my little town of Grover Beach. If you want to attend the council meeting when the proclamation is presented look here.). Check out the work of Tony Stoddard, Cole's dad, to see which states are on board. Even Niagara Falls is lit up gold!

Now, not everyone is completely happy with Mr. President, because the childhood cancer community's request to have the White House lit up gold was denied, and some of the message within the letter talks about how great we are doing at beating childhood cancer. Try telling that to Sam. Or me. Or his dad. Or anyone else that has ever known this bright light of a little boy.

Want to DO something? We start by raising awareness (=funding=research=cures). If you are a Californian, like me, write to Governor Brown. If you live in another "white" state, like Connecticut my other home state (for shame), write to your governor. I just entered: "contact Governor Brown" in my internet search engine. It was easy.