Author: Sabrina

Yeah, last night was a little better but not much. I guess I just have to accept that Benadryl works and use it. Poor little guy has his days and nights mixed up.

I had an interesting experience that started with his 2nd wake-up at 4:30 (told you it was better). Every time I opened my eyes the room spun around me. It’s really hard to convince a child to go back to sleep much less get up, go to the bathroom, and dose out Benadryl, walk back to the bedroom, sit the child up, hold him while he sits, and pour medicine into his mouth-all whilst the world spins around you.

After about 20 minutes of, asking myself, “Is this really happening?” “I can do this, right?” I called for John. He took over with Sam, while I stumbled to the master bedroom. I felt a little nauseated, but I managed to sleep until 8. Sam, thanks to Benadryl, slept until 7. I woke up still spinning and nauseated, had some dry heaves, but by about noon I was good.

Is that what they call vertigo? Like I said, it was interesting. And really, I’m fine. I even went for a run tonight. Of course I pulled my calf. Again. At least I’m not spinning anymore.

As for Sam, he continues to decline. He needs so much help walking, I don’t think he could do it alone. He’s still awake most of the day, but he spends a lot of time in his chair or on the couch just kind of spacing out. He listens when we read to him and gets the jokes and laughs.

And world keeps turning, as evidenced by the arrival of October and the eldest child’s birthday. Tonight we celebrated Ben’s 17th a few days early. I can’t imagine what he wished for.

Sam had a rough night. No, don’t worry, he wasn’t miserable. He’s not in pain. He just couldn’t sleep.

Sam woke me at 1AM (about 3.5 hours hours earlier than normal) with his usual, “I have to pee.” Funny how at night, in bed, his speech is so clear (relatively speaking), and easily audible. Then he was up again at 2:50. I said, “Really?” No, I did because less than 2 hours after peeing one shouldn’t have to pee again. But you know I don’t want a wet boy and a wet bed, that’s not fair to any of us, so pee we went. And back to bed.

3:15: “I have to pee.” No you don’t. There’s no way. You just went 25 minutes ago. “Well then, can we get up and start the day?” Baby, it’s nighttime. It’s dark outside. We need to rest. Something else is going on. “Why can’t I sleep?” He said it just like that. Clear, succinct, audible. I’m telling you, at night, in bed, I don’t have to ask him to say something 3 or 4 times. I don’t have to guess. His speech is there.

So we went through the checklist-

  • You just peed. You need to go again?
  • Too warm? Too cold?
  • PJs uncomfortable?
  • Pain anywhere (waiting with bated breath)?


  • No.
  • No.
  • No.
  • No (sigh of relief).

There’s nothing I can fix to make it right. There’s nothing I can fix to make it right.

Finally, it dawns on me-Benedryl. If it’s the steroids keeping him up or the tumor, Benedryl might be the answer. So I gave him Benedryl. Still he tossed and turned. He stretched out diagonally across the full-sized bed we share.

And then I passed out.

He awoke me at 6:45. “Can we get up now?” Did you sleep baby? “No.” I sure hope he’s wrong, and he slept. There’s no way to know, but he sure was tired today, more-so than usual.

Sam sleeping in Inverness. June 2012.

Sam sleeping in Grover Beach. August 2013.

Tree climber

Or Walmart Mom, or Trader Joe’s Mom, or Mom that passed us on the bike path…

I see that look. I see your sappy smile with no eye contact and the quick look away. I know what you’re thinking. And you’re wrong. You’re thinking for a brief moment about how grateful you are that you aren’t me. You’re thinking how fortunate you are that your child was born “normal,” with no special needs. Maybe for the next hour you’ll have more patience with your stuck-in-the-shopping-cart, screaming 2-year-old. Good.


Appreciate that healthy baby, Momma. Thank your lucky stars, for now. Cause I’ve got news for you: My kid wasn’t born this way either. He was a healthy 6 pound 6 ouncer. He met all of the developmental milestones on time or ahead of time. He read above grade level. He was a whiz at math. He won writing awards. He drew with such fine detail and imagination. He spoke with ease and eloquence to adults. He jumped and ran and climbed trees and dug in the sand on the beach.


And then he got cancer. Cancer took my healthy baby away, and it can take yours too. The only known risk factor for childhood cancer is being a child.


P. S. My house was decorated for Halloween on October 3rd. Costumes (even the Dog’s) are ready, candy is purchased and being eaten. Now. Not wasting any more time.

Sam continues to remain relatively stable. He needs our help to walk, and any other sort of getting around (into and out of chairs, bed, the car). He still talks a little, but very quietly and we do a lot of guessing and asking yes and no questions. I feel like in the last few days he’s not laughing as much, but he is still awake most of the day and sleeping pretty well at night.

Since we’ve made it to October I need to get busy ASAP on Halloween decorations. Sam doesn’t have a favorite holiday, but like most kids his age, he loves Halloween-the dressing up, the candy, the being out after dark, the candy…Now usually I am what like to refer to as a slacker mom. I’m the one that forgets it’s my turn to bring snack for soccer and so I go out during the first half of the game to buy it. I’m the one who forgets that it’s picture day, so my kid’s wearing his usual for the photograph. And I’m the one that puts up Halloween decorations on October 31st between the end of school and trick or treat time. In fact, one year I forgot to take pictures of the kids in their costumes, so on November 1st I had them dress up again, lit the jack o’lanterns, and snapped a photo. I can’t be slacker mom this year. There just isn’t time.

Halloween 2012-one month, six days into treatment

There’s no easy way to break this news:

Jigsy 2012, in all his glory

Today we lost Sir Jigs. Yes, Jigsy Kitty, AKA The Sexist Male Cat ever, is gone. And it’s all thanks to cancer. Yep, stupid, fucking cancer killed my cat.

On Saturday evening I noticed he had a little bump on his lower eyelid, and John said he hadn’t been eating as much as usual and had been coughing for a couple of days. Now Jigsy’s always been a rather hefty dude, weighing 12 pounds when we really buckled down and restricted his food. Now that that I think about it, a couple of months ago I thought, “Wow, we’re doing really great with this weight control thing for Jigsy. He’s looking svelte.” Maybe that was the start of it. It doesn’t really matter.

He went to Pismo Beach Vet Clinic on Monday morning, they did an x-ray and found lumpy kidneys and a mass on his lung. Had we caught this earlier it wouldn’t have changed the outcome. He had lymphoma, and it looks like the first sign of it was a mass in (or on) his lung, which makes the prognosis even worse. I brought him home Tuesday afternoon, not realizing how bad things really were. Poor kitty just couldn’t breathe. I kept him home last night and it was torturous to watch his labored, rapid, wheezing breath. He didn’t move except to get away from us-in the closet, under the bed. This morning he ended up in his favorite morning spot-on Sam’s bed, in what should’ve been, except for the foggy day, a patch of sunlight. He didn’t even have energy to get up and use his litter box. He didn’t eat or drink.

I knew what needed to be done. John knew. Even Abby didn’t want to watch him suffer anymore. Ben said, “You’re not going to kill my cat.” We talked about prognosis. We talked about suffering. We talked about how if Jigs was a human we would put a diaper on him and pump him full of morphine until it eased his breathing, which would put him to sleep, and he would sleep until he died. Too close to home. We talked about euthanasia.

Ben and I brought him back to the vet this morning. I wanted Ben to talk to Dr. Joel, and I wanted Jigsy in an oxygen chamber while Ben came to terms with what was best for Jigsy. I wanted Jigsy to be comfortable while Ben wrestled with this impossible decision-not that it was really up to Ben. He’s not a grown-up. I wouldn’t do that to him, but I wanted Ben to be ready.

After a few hours at home and more talk of the life span of pets and our responsibilities to them, Ben said he was ready. I called the vet and made an appointment for 7 this evening. Less than an hour later Dr. Joel called to say Jigsy was in terrible distress, breathing as one does when one is dying. He asked for my permission to euthanize Jigsy right away. John was picking up Abby at school and I was home with Ben and Sam. I couldn’t leave. Even if I had rushed to the clinic, Jigsy would have waited 10 minutes for relief. I wouldn’t do that to him. I let him go. Ben and Abby were upset, but they understood and have forgiven me. John knew it was the right thing to do. Sam had been told that Jigsy was sick, and I delivered the worst news as gently as I could. I’m not sure he understands.

My shirt for tomorrow, October 1st (

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, potty humor, going for walks, and eating good food.
I’m sure we were talking about farts

P.S. You can still get in on the Lemonade action by donating here.

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:

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 security system: wind chimes, baby monitor, and safety rail. Dog willing, I will walk tonight.

And Sam? Sam enjoyed the cow movie, again. The award made Sam smile. Sam had leftover Tomato-Basil Pizza for lunch and Rigatoni Baloney for dinner so he was a happy guy. And that’s all that matters.

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.

May 2013

May 2013

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 brought the iPad with me-just in case. At 2:06 John and the teens walked in the door and a call came in on the iPad. I figured it was an assistant of sorts setting up the call for Giada so I didn’t worry too much that Sam was sitting on the toilet. It was her! Giada appeared on the iPad screen all casual and beautiful with sunglasses on top of her head. And Sam’s pooping. Pooping.

May 2013

The teens and John and I crowded into the hallway outside the bathroom. Ben figured out why Giada couldn’t see us (I had inadvertently turned off video. Good thing, huh?), John and I switched places and he went into the bathroom with Sam, and Ben and Abby and I went to the living room to chat with Giada. She wanted to know about Sam. Not sick Sam. Sam. So I briefed her on Sam the Adventurous, Sam the Kind, Sam the Smart, Sam the Artistic, and Sam the Wise-Beyond-His-Years.

Sam and John joined us moments later and we talked about food, cooking, the pleasure of using a good knife, her children’s books, which of her recipes we’d tried, and the difficulties of cooking with just one vegetarian in the house (Ben). She was a little shocked at Sam’s use of ranch dressing as a pizza sauce, but encouraged us to experiment a little-“Maybe try a little ranch mixed in with the marinara sauce to make it creamy.” She also urged us to try the recipes included in the children’s books (which we are really enjoying, by the way). We signed off with a promise to send pictures of the pizza we would make from the recipe in the first book “Recipe for Adventure: Naples.”

Zia’s Tomato-Basil Pizza

Today was the premier showing of “The Many Adventures of Cow and Kid,” and animated short produced by many generous hands for Sam. It’s the cartoon version of a game Sam played with John from the time he was 2. Sam laughed hard. It was just the reaction we hoped for. Because of time constraints we were only able to include a couple of cow stories. There are probably a dozen more scenes that John and Sam acted out with Sam’s plastic cow and pig, Legos, and Lincoln Logs, but that would’ve taken years.

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 changes things. It changes how we supervise Sam after he goes to bed. Ears are not enough. For last night my solution was to stay with him in his room. That means I went to bed at about 7:40. That means tonight I have to go to bed at 7-when he does. Unless we can come up with something else: a safety rail? That’ll certainly slow him down, but we still won’t hear him so he’ll wet the bed. A baby monitor? You know I think I dropped ours off at Goodwill just very recently. Why did I do that?

Most of Sam’s meds and vitamins

So you see we keep changing and adapting our lifestyle with every new wrench cancer throws in the works. First it was a medication schedule and Sam learned to take pills. We learned to watch for signs of infection and low platelet counts. We learned how to explain to each new nurse how best to access Sam’s port. We learned to apply numbing cream and press-n-seal to the port site prior to access. We learned to nag Sam about drinking water. We learned to stay away from people and situations where he could be exposed to viruses he couldn’t fight off. I learned to write really good sub and emergency plans for Sam’s scheduled treatment days and unscheduled visits to the ER. We learned to read the printout from the lab detailing Sam’s blood counts. I’ve learned to count his respirations and heartbeat to gauge if his system is under too much stress.

And then there’s equipment-we didn’t know how to open or fold up a wheelchair, now we do. I installed rails on the toilet. My friend, Linda, gave us a gait belt-at least I think that’s what she called it. It gives us a secure place to hold Sam when he walks, in case he falls.

These are not things I wanted to learn.

We’ve only been at this for one year. Sam’s only had one surgery. This is probably peanuts compared to what some families go through.

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 for Teddy Bear Cancer Foundation. The amazing team of Danya Nunley, Stephen Patrick, Todd LeMay, Victoria Chase, and Jesse Marquez decorated the room, alerted the media, and taught the class. Danya’s daughter, Eliana, a fifth grader and cancer survivor, took the lead for a song. She’s one talented and powerful child. Not surprising, knowing her momma.

Have you heard about Lemonade and Love for Sam? It’s a fundraising event for pediatric cancer research happening this Friday at our neighborhood school-the school Sam attended. It’s impressive what this group of moms has put together. They’re not just selling lemonade. There will also be bracelets, tshirts, baked goods, and a raffle for gift cards. They are working their butts off, so if you’re in the area, please come. If you’re not local, donate here.