brain cancer

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, po...

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:   http://www.alexslemonade.org/mypage/117006)

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 secu...

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 brou...

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 chang...

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 ...

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...

Wow. There's so much I could say tonight. May 2013 Today 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 w...

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 T...

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....

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 ma...

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 alon...

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 t...

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 S...

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 Pre...