Author: Sabrina

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.

Dear teachers,

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

Respectfully,
Mrs. Jeffers

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

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.

That was so Sam. He’s still here.

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

Today

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.

GOLD

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.

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.