Author: Sabrina

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.

I just want to write about one thing today. Kindness. People, if you allow them to be, are kind. This is a recording of today’s kindnesses. Just today’s.

  • My dad came by this morning to take my car to the service center. It’s been reluctant to start lately, and a few weeks ago when I checked under the hood (for dead animals because there was this putrid stench) I noticed corrosion around the battery terminals. We thought the two might be connected, trouble starting + corrosion. Anyway, the folks at the service center offered to clean the terminals while my dad waited and they didn’t charge him. (+2, one for Poppy, one for the Service Center)
  • I received a text from my cousin detailing her conversations with the ACT (as in College Board) people, and Stanford Admissions as she went about continuing to help my teen-aged man-child with his college applications. His ACT date remains open until he’s ready and Stanford was helpful. (+4, one for the cousin, one for ACT, one for Stanford, one for the counselor who is donating her time).
  • My mom came by this morning too. She scooped poop and washed dishes. (+1+2)
  • Trisha walked Chance-the-major-pain-in-the-ass-good-thing-he’s-cute Dog. (+1)
  • The school nurse and principal came to visit Sam. The nurse brought Sam a Happy Meal toy (a plastic shark that launched a plastic arrow-thing) and the principal encouraged him to aim for her. (+2)
  • Crafty cooking friend, Robyn, brought and assortment of jams she made, bread, and cookbooks. She hung out and asked Sam about his favorite things: food and his animal friends. (+1)
  • Mrs. Harlan brought Sam Giada’s latest publications (+1)
  • A new friend wrote a poem for Sam and gave it to her singer-songwriter friend and asked him to turn it into a song for Sam, and he did. They came over on this Erev Rosh Hashanah to perform the song and brought with them some musician friends and a videographer/photographer to record the sweet memories.(+100, these artists and friends also recorded this in a studio with other musicians/vocalists, and I know there was creating time, and practice time, and recording time, and travel time, and time off from the jobs that pay the bills time, and they stayed and had apples and honey and apple cake with us to celebrate the New Year-and I’m pretty sure they aren’t Jewish, and they accomplished all this in one week).

I know, you all want news on Sam. There’s just not much to report, which is a good thing. Today marks 1 month and 2 days since Nurse Donna said Sam was “on the cusp of a crash.” But we made through band camp. We made it to the start of the school year. We made it to September. We made it to Rosh Hashanah. The milestones I am marking and looking forward to have become smaller, but they are still milestones.

Since I’ve been sitting here staring at the blinking cursor, sighing heavily, I guess that means I have nothing to say. Having nothing obvious to write about tells me that nothing out of the ordinary happened today-good or bad. And that’s not so bad.

Sam went with me and Bubbe to take Ben to school this morning (he went late, Abby went at the customary time. How wonderful that they are learning to be independent), and then accompanied us to Ross to shop for a new skillet. This is what we came home with.

It is Childhood Cancer Awareness month after all. And the color is GOLD. Oh, and I got my skillet.

Today was Hospice Nurse Donna’s visit day.In fact, it was access Sam’s port and flush it day. Sam hasn’t been accessed in 6 weeks, and since he’s gained some weight it’s become more challenging to access him. With one poke the Donna was able to flush his port with saline and heparin. She didn’t get any blood back, which would have been nice-let’s her know she’s really in and the line is clear. She said not to worry, it wasn’t necessary to draw blood, and so he didn’t have to endure multiple tries.

I think the heat’s really getting to Sam. (Understand that in Grover Beach when we say heat we mean that the temperature rose above 72. It was 83 in Grover today.) Sam’s left foot is swollen. He’s says it’s not uncomfortable, but putting on shoes to go out was hard. Nurse Donna said something about it being connected to loss of function on the left side. I hope when the weather cools down (expected high of 74 tomorrow-still hot for Grover) the swelling goes down as well.

I went for a run tonight. I’m sticking to my 1 mile lap around the neighborhood these days so I’m never more than 5 minutes from home. The lap takes me around our neighborhood school. It was Ben’s school. It was Abby’s school. It was Sam’s school. I was a teacher there for many years. Tonight was Back-to-School night, and for the first time since 2001 the Jeffers were not in attendance. I can’t let myself think about it. I choose not to go there right now.

Tomorrow is Rosh Hashanah-the Jewish New Year. Thanks to friend, Elaine, the kids have cookies to decorate and we have apple cake for tomorrow. Thanks to Rabbi Linda, there’s round challah, apples, and honey. It’s a good thing other people are assuming we’re observing and have provided us with some of the traditional goodies, ’cause frankly I just don’t care. I’m not going to services, I’m not cooking, I’m not sending cards. It’s just another day. It’s another day with Sam. That’s what I care about.

I want to thank my friends and family in the wide world for continuing to log their miles and hours spent exercising for Sam. Showing your support in this way is a comfort to me. If you are curious how to keep or start logging your exercise, you have two choices. This: Run for the White House for Childhood Cancer Awareness, and this: Sammy Rulz, Cancer Droolz. Check out those pages and like the first one, and request to join the second one (I’ll probably let you in). Then scroll down the pages and see how other folks are doing it. If you want to know how it all got started and why we are running for the kids, go here: Brian’s Phirst Blog

As I attempt to start this post the teens are lying on the floor behind me addressing envelopes for their high school band’s sponsorship drive. They are not quiet, and I’m a little disturbed because in this day of email, texting, and instant messages, they don’t know how to address an actual envelope made out of paper. They also HAVE to know why the zip codes for Arroyo Grande homes and post office boxes are different. WHY don’t these married people have the same last name? Do ALL California zip codes start with 9? Are you SURE? And they’re laughing. I feel so normal and annoyed, and then I remember why I’m writing this…

Sam really had a lovely day. Probably for the first time in West Coast Jeffers Family History we BBQ’d on Labor Day. We had a visit with giggles from Teacher Neita (preschool teacher to all the kids), and we walked with Bubbe and Poppy (my parents) on the boardwalk at Oso Flaco Lake.

See the gold scarves? Walmart. We also found gold and white tank tops.

We arrived home to a front door jammed closed because Chance (no pets allowed at Oso Flaco) had the rug shoved up against the door and the kitchen trash dumped and spread all over the kitchen. Except for a cob of corn to which he gave special ranking with a spot on his bed.

There’s more. This shot is not wide enough to do Destructo Dog’s work justice.

See, it’s not all rainbows and unicorns at the Jeffers’ residence.

Bedtime was crappy. Sam was restless, making noises with every exhale and constantly shifting position. He said he was afraid of having a seizure. He’s convinced he has seizures all night long. I tried to console him by reminding him that I sleep with him at night, and I would surely know if he was seizing all night (he’s not), and I would definitely wake up and take care of him if he were to have a seizure. Finally after two .25 ml doses of Ativan and a long time cuddling with Mom and then Dad, he fell asleep.He shouldn’t have to be so scared and worried. I just want to take it all away, but I am powerless.

So, where are we tonight? Pretty much the same place we were yesterday and the day before, I think. Just another day in Cancerland.

We eat. We watch T.V. We walk. We sit in the yard. We cook. We visit. We go to the store.

So, I guess where we are is at the end of a good day in Cancerland.

It just happens to be the end of the last day of the event Run for the White House for Childhood Cancer Awareness, and the end of the first day of Childhood Cancer Awareness Month.

For months now I’ve been distracting myself with promoting the event, inviting my friends, answering their questions, and “liking” their posts. It’s given me comfort to read their posts about the miles they’ve run (or walked, or whatever) in the far-off places they ran them. Now that the event is over where will I find that comfort? I’m hoping we can continue to log miles for Sam. There are two places to do it: Run for the White House for Childhood Cancer Awareness community page, and Sammy Rulz, Cancer Droolz. Starting tonight I am promoting those groups, inviting my friends, and liking their posts.

Now about Childhood Cancer Awareness Month, how do we recognize and promote that? I started by putting in a yellow (almost gold) porch light, and asking my friends to do the same. I guess I could paint my nails gold. What good does that do? If I don’t connect the dots for people by explaining why I’ve gone gold, it does no good. Should I put a sign in my front yard? Have a special hoodie made just for wearing every day this month? Maybe there are some ideas on Pinterest.

There’s some stuff you can do here.

Blogger out. Time for bed, Erin.

This boy

Here’s where I really start to freak out. That boy. That beautiful, bright and shiny boy is the one that is dying. The boy I am caring for now is nothing like him. Except for the sweetness. And the love. And the hugs. I am grieving for a child who is standing right before me. I miss him, yet he is still here. I cannot wrap my mind around it. So I immerse myself in caring for the sick boy. I love him with everything I’ve got. I focus on guiding my other children through this pain and I hope there’s another side. 

A few months ago when a friend asked me how I thought I might deal with this, I told her that I thought the only way through it was through it. No secret. No magic. No formula. No plan. A few weeks ago she sent me a Hopi prayer she found. It supports my thinking in some ways. In others, it goes against what I want to do. I want to shut you out. I want to be alone. But strangely I feel better when I share this. I feel better with you here.