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).

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.

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

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:

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.

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 (https://www.facebook.com/ALSF5Cities) and like it so that you can get updates, and join the event (https://www.facebook.com/events/156485581216230/).

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.

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.

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

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.