Buried Alive

What we are going through right now feels like torture. It is an agonizingly slow suffering, one that saps every ounce of energy and joy and hope out of you. It feels like a nightmare that won’t end. It’s suffocating—like being buried alive. I can now fully understand some of the atrocity of war and famine and disease and the emotional and physical suffering brought on by it. Previously, safe in my (western capitalist democratic) cocoon, I could only imagine the effects of such things; now I am living it.

Each new day brings with it both immense joy that Sam is still alive and tremendous anguish from watching him live life as he must now. Each day, it seems, we are sentenced to watch our son die.

Not very long ago I had resolved not to do this. I had promised myself (and my family) that I would cherish each moment spent with Sam and had determined not to sit around and feel sorry for ourselves, but instead to live life and celebrate the precious moments we had with him.

On paper that sounds so good. In reality it is hardly practicable. We can no longer do anything with Sam. We can barely communicate with him. We spend each moment waiting with bated breath for something to happen. When he tries to speak we desperately struggle to hear what he is trying to say—we don’t want him to suffer or want for anything for even a moment. We do whatever we can to comfort him—a sip of water, a spoonful of applesauce, a syringe of medicine—and then we settle back down to more watching and waiting.

Buried alive again.

I want you to know that Sam is alive.

I want you to know that we’re “fine.”

I want you to know that Sam sleeps peacefully, and comfortably for a few hours at a time, and then he stirs and makes simple, whispered requests for food, positioning changes, and trips to the bathroom that we struggle to understand.

I want you to know that if you had told me that he would go from eating sitting up in a chair unassisted, walking with help, and standing at the toilet to pee, to not even being able to hold his head up and peeing in a diaper in less than 24 hours I would have told you to go fuck yourself.

The hardest part is watching Sammy, my vibrant, active, smart, creative, compassionate, 8-year-old, be altered by this killer.

The hardest part is not being able to honor his requests. “Can we get up and start our day?” “I need to go pee.” “I just wish everything was normal.” “I want to go home.” This-lying on the couch all day, sleeping, taking sips of soup and tiny bites of McDonald’s soft serve ice cream (McFlurry)-is our day, baby. It’s okay to pee in the disposable pants (diaper), Sammy. I wish for that too, Little Guy. We are home, sweetheart.

The hardest part is knowing that this will not end with recovery. There will be no awakening beyond the half-open eyes we see now. There will be no physical therapy or occupational therapy or speech therapy or IEP or…

I also want you to know we are grateful for your help, and we are comforted to know that you are holding us all in your hearts.

Please remember that there is still so much work to be done in the childhood cancer arena. While I am still mothering Sam I need you to continue that work for me. Raise awareness. Tell people childhood cancer is not rare (1 in 300 kids will be diagnosed. And if you think I’m being alarmist, Google, “childhood cancer blog,” and start reading). Tell people childhood cancer research does not get enough funding from public or private sources. Tell people we need treatments specifically for kids that are effective for their cancers and less toxic. Refer them to Alex’s Lemonade Stand Foundation for information and ways to help. Send them over to The Truth 365 for facts and an action plan. Tell them to check out St. Baldrick’s.

Whatever you do, please check out an organization before you start donating, volunteering or referring other people to it. Check them out on Charity Navigator and figure out how much of the money they raise actually goes to childhood cancer research.

Whatever you do, don’t support the American Cancer Society as a means to supporting childhood cancer research. Please read their report and this article.

If we arm ourselves with anger, information, compassion, and vulnerability, I believe we can make a difference.

Remember Sam’s song, Rocket Ship, by Chris Beland? Here’s the video.

Sam has most certainly deteriorated quickly. So quickly, in fact, it happened over the course of one day. At 1:30 on Monday we were enjoying looking at the animals at the Avila Valley Barn, and by 2:30 Sam was puking. And yes, he slept and puked all day Tuesday. He was restless all last night.

Today Sam slept all day again. He had a seizure this morning at 7, followed by vomiting up his steroids and Keppra. We gave Ativan for seizures since its a tiny dose that’s easy to absorb, a suppository for nausea and vomiting, and topical steroids for the swelling in his brain caused by the tumors. He seized again at 2 so we gave more Ativan, but his breathing was so labored (I thought he might die right then) that John decided to call 911 while I called the hospice nurse. By the time paramedics got here the seizure was over and his breathing was better, so we did not go to the ER.

The thought of losing Sam is unbearable. But the thought of losing Sam in a panicked, chaotic, scary situation is well, scary. Awful. Terrible. I don’t want his last moments to be full of fear and struggle.

The hospice nurse has pieced together a puzzle for us: restlessness, vomiting, lowered heart rate, sleeping all day…this is end of life stuff. We likely have days with Sam. We’d like to keep him at home if we can control his seizures and the vomiting (which keeps the meds in him). I want him to die in his sleep, surrounded by family, comfortable.

As to visitors-we don’t want any. As to updates in the near future-don’t expect them. If you want to help-there’s a care calendar that we will be asking friends to open up so that you can bring meals (we’ll provide a link later). Sorry if that sounds harsh, but…there is no but.

Sam slept away most of Tuesday. What little food he ate he threw up. I don’t know if this is the stomach flu or progression of the cancer. Only time will tell.

His sleepy day was followed by a restless and wakeful night. Is that because he slept the day away, or is the tumor confusing his days and nights? Only time will tell.

I don’t know if I should be bracing myself for the end, or if he’ll bounce back and we’ll get a few more weeks. Just Monday night, John and I were talking about Sam celebrating Halloween. Now it’s changing on me.

I’m terrified of what’s to come.

Monday, October 7, 2013

Sammy bounced back a little today. This morning he was just a little more bright and shiny. We even made an outing to the Avila Valley Barn to see the animals, and buy some produce and baked goods. There was even a heifer named Abby. I think Sam had some fun, but unfortunately as soon as we got home he threw up. So I’m thinking that my experience two mornings ago with vertigo, nausea and vomiting was a simple stomach virus. And now Sammy’s got it. Thankfully it was pretty mild for me, so hopefully it’s the same for him.

Tuesday, October 8th, 2013

Sam awoke at 4AM asking if it was tme to get up and start our day. I gave him Benadryl hoping that would buy us another couple of hours of sleep, but it was not to be. He was up at 5AM, 5:45AM, 6AM, asking if NOW we could get up, and like a kid I begged for us just to remain in bed until my 6:10 alarm. Just 10 more minutes, please?

So we got out of bed at 6:10 and went about taking vitamins and anti-seizure meds, and drinking hot cocoa. At 7AM Sam asked to please go back to sleep, in his bed. I was relieved and concerned by his request, because you know I’m exhausted, but you also know what sleep means. When we got back to the bedroom and into bed, he threw up his hot cocoa (and possibly the anti-seizure meds?). Kinda goes with the feeling sleepy if this is indeed a stomach virus. We got cleaned up and went to sleep til 8:30.

He stayed awake for all of half an hour and has been mostly sleeping since. It’s now 11:45. I’m worried. Is this a virus, or is it the tumor? Should he have more anti-seizure to replace what he threw up? He hasn’t had his steroids yet today. Do I risk giving him that? Steroids are known to cause upset tummies and we’ve already got that.

Noon

Sam is up. He’s had some jello. He’s asking if he can have some of his leftover Mc Flurry. And he’s asking for a story. Sounds good to me. I just wish he could stay awake to enjoy these things.

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.

Hiker

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.

Chef

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.

Sincerely,
Me

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 (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, 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.