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.

Changes in Sam continue their general downhill trend. Nothing major, but the signs are there. Walking just gets harder and harder, requiring more and more support. His voice, which has been a whisper for weeks, is even fainter. He’s sleepy.

He’s still without pain. When I ask if he is happy, he says, “Yes.” He likes having Ben and Abby around more. He likes to come with me to bring the teens to school and pick them up. When I ask if he wants visitors, he says,”Yes.” Every time. I’m trying really hard to control the flow of guests, not because it overwhelms Sam but because if you all come at once then he’s bored for the rest of the day! He wants to eat. All. The. Time. I say, “No,” a lot. “Let’s wait 15 minutes.” He eats a lot of grapes. And watermelon. And blueberries. And the occasional bowl of banana pudding. Thanks to my friend, Susan, we have plenty of that.

Today in addition to a visit from Susan (who walked Chance-thank you. He’s a 71 pound puppy, with puppy-like energy), Mari came over to work on King’s crown, Mrs. Wadlow (Sam’s 2nd grade teacher), and Mrs. Jones (school librarian) came by to say, “Hi,” and finally Rabbi Linda helped us bring in Shabbat.

My mom and dad were here a couple of times today (they live less than a half mile away). Thanks to mom there is not a month’s worth of dog poop in the backyard, I tossed the rotten food in the fridge, and the plastic containers it was in were washed. Maybe tomorrow Sam and I will browse through our Giada books, and create a menu. Then I will make a list and do the shopping.

I gotta give props to the staff at the high school. With my cousin, the English teacher, as their guide they have been kind and generous with my children. The teens feel loved.

As for me, sometimes I feel strong, and sometimes I fall apart. Abby only joined me for the first mile of tonight’s walk, so I was alone on mile two. With no one to talk to but the dog I find myself going to the darkest place possible. Pretty soon I’m walking in the dark, crying. There’s nothing wrong with crying. I know I should be crying now. A lot. But after a mile of crying I don’t want to be alone anymore. Then there was a miracle. Amanda joined me for the last lap and pulled me up out of the darkness. Okay, I’m being dramatic. But it was a relief to talk about something that had been bothering me (someone dumping IN-if you are familiar with the Ring Theory, you know what I mean), instead of just crying alone.

What Ben is doing instead of going to first and second period

Sam seems to be somewhat in the same place. He slept all night, aside from a wake up around 1am to pee, without the help of Benadryl. He walks with assistance, he wants to eat constantly, he gets sleepy but refuses to take a nap, and every few days he poops his pants. He also laughs at our jokes, talks to us (in a whisper, yet on the phone-he speaks), gives hugs, says, and “I love you too.”

After staying up late last night and talking about how shitty it is that Sam, “will never get to study music theory” (Ben’s words), the teens decided to miss periods 1 and 2 (English and Band for both) of school to spend the morning with Sam. The three of them sat on the couch and snuggled while Abby read to Sam, and I felt free to get dressed, wash dishes, and check my email. I suspect this will be a frequent pattern in future days, and doubt Ben and Abby will want to share Sam, so plan your visits for after 10am and before 3pm when you can.

Sam and I had visitors throughout the late morning and early afternoon. Chance went for walk (jog, run?) with two gorgeous ladies who are sisters at heart. Sam loved¬†the company; he is never overwhelmed and I appreciate that everyone puts up with Chance’s barking and sniffing.

I am terribly proud of how Ben and Abby are learning to ask for what they need and think for themselves. Early this morning they both emailed the teachers whose classes they’d be missing. In fact, Abby went to see one teacher at lunch to find out what she missed. After school Ben decided to skip band practice to hang out with Sam. Once Sam went to bed, Ben worked on homework, and then walked (and talked, and cried) with me for an hour. Abby chose to go to band practice. I know that was hard for her because it wasn’t what Ben did, and she tends to follow him. During practice at the high school, about 4 miles from home, she heard sirens, panicked and sent me a text to see if Sam was ok. We have much to work on, I guess.

A totem from 2 years ago.

Well, Benadryl works, doesn’t it? I had no idea. Sam was up at 12:45 this morning, and 1:45, and then I dosed him with Benadryl. In spite of the dog’s incessant whining at 4:30, and the din of an enormous truck BACKING UP down the street at 5:30, he slept until a little after 6.

We had a nice morning with more visitors than we expected, and then he got really sleepy around mid-day and it just made me feel so sad. Helping him walk makes me sad. Helping him down into his chair and up from his chair makes me sad. Lifting him into bed and out of bed makes me sad.

I want to be happy that he’s here. He’s awake. He communicates (yes, it’s a whisper, but still he can communicate). He uses the toilet. He eats. He drinks. He says I love you. He gives hugs. He is not in pain. So many things to appreciate.

As for the teens, we are sorting them out. I discussed my concerns with their counselor, and with the help of my cousin, who happens to teach English at the same high school, we will get them the support and time with Sam they need. However they choose-they can come in late, leave early, get more time for homework, skip practice, and they can even hang out in Mr. Anderson’s office in the middle of the day if they just need to have a moment.

The sibs at CHLA in December 2012

Sam seems pretty stable for the moment in a low-functioning, crappy sort of way. He’s not getting any better, but he wasn’t any worse today than yesterday either. He didn’t poop his pants today, he had one, nice, hour-long nap, and we heard his infectious laugh at least once. He did however wake up at around 2am and didn’t go back to sleep (as far as I can remember).

We had a scheduled visit from the hospice nurse who gave me advice on getting him to sleep more at night (Benadryl), and did not observe him to be in any distress (my assessment as well). His heart rate is not alarmingly high (120), and neither are his respirations (30ish).

It’s the teenagers in the house that are in distress. Since school began I’ve watched the stress levels of Ben and Abby rise as the demands on them increase and their brother gets sicker. Abby exhibits stress as you might expect a 14-year-old girl to; she’s pissed. At everyone and everything. I know I can’t do anything right, that’s for sure. And sorry, Bubbe, but you bought the wrong ground turkey for taco night. And goddamn it, her math teacher didn’t explain how to do this type of problem. Ben is just sad and distracted and prone to crying.

I’m not sure how to help them. So I’m digging deep into my experiences as a behavioral counselor. When a child acts out in anger or sadness what’s one of the easiest, quickest, and simplest ways to reduce the undesirable behavior? Reduce the demands on the child. So I am starting there. My first thought is that Ben and Abby, who are both in band, do not need to be at all after school practices and events for band, and frankly, can’t homework wait? In fact, they’re both so bright, could it really hurt for them to go to school late on ocassion? I don’t know. I’m so confused. Ben’s a senior for Pete’s sake taking 5 AP courses. Can he miss AP Lit a couple of days a week? Am I helping him or hurting him? 10 years from now will it matter if he f-cked up the 1st semester of his senior year? Or will it matter that he spent time with his baby brother before he died?