brain cancer

Let's say that grief is a road. It's pretty bumpy, windy, and kinda dark right now. There are also all these opportunities to pull off and take a side trip. Like I can choose to focus for a while on the Well-Being of the Teens, but eventually that path rejoins Grief Road. I can also distract myself with Raising Awareness, but only for so long. Then there's the lovely Organize the Garage So We Can Park a Car in It...I'm too lazy to even go there. In between side-trips I experience these awful, shocking moments when the enormity of his absence hits me.  Halloween 2010 One of those moments was yesterday when I went out to the Hoarders-worthy space that is my garage to get Chance his evening scoop of dog food. I saw Chance's Halloween costume. It's a hot dog. Sam picked it out on our last outing to Target (the one that inspired this post ). Chance is here, but Sam is not. Sam will not dress up for Halloween. He will not go trick or treating. That means I'm not g...

My thoughts are so jumbled, incomplete, I can't focus.  I start to think about how much I miss him, and then I get distracted by images of the moments and hours after his death-his last breath or his little body on the gurney, under a quilt being wheeled away from the house.  The teens are distraught and scared to go back to school.  The dog is acting weird, he's suddenly so needy.  Sometimes I feel numb and so guilty that I am functioning. Why am I not weeping and useless all day? I should feel worse. I don't feel badly enough for a mother that buried her son less than a week ago. That 20 pounds I put on over the course of this last year is really bothering me, but I write this in between bites of red velvet cupcake and sips of red wine. I can't believe he's gone, and yet I watched him die. How is this possible? I can only remember sick Sammy. I see flashes of healthy Sammy, and then I realize I'm remembering photographs. When will my memories of healthy Sam re...

Sweet and gentle Sam�my �lil� guy�:   From the moment I first saw you I knew you were someone special.  I knew you would have an impact on me and the rest of the world that we would feel forever.  From day one you were a beacon of sunshine and energy so powerful that I always felt safe around you, and I was comforted by the knowledge that the world would benefit from your presence and the gifts you would share.  I  didn't  know at the time what those gifts would be and I  couldn't  know at the time how you would share those gifts but the magic was there.  Everyone around you could feel it. Sweet and gentle Sam�your time with us was far too short; but I want to thank you from the bottom of my heart for the time you did give us.  In your lifetime you taught me many things:  You taught me that a small, quiet voice could have an enormous impact on people; you taught me that being kind and gentle was far more powerful than a booming...

is not enough time to live. It was not enough time to mother him. It will never be enough. Samuel Alexander Jeffers exhaled his last exhale at 6:31 this morning at his home in Grover Beach. Sam was diagnosed with brain cancer exactly 1 year and 1 month ago. 13 months later his fight is over, but ours has just begun. His journey in this life is complete-way too short, but complete. I have half a lifetime to comprehend and mother him as best I can from here.

There isn't much to report. I sit with Sam and watch his chest, waiting for each breath. I scan his face searching for signs of distress, discomfort, pain. I touch his skin, feeling for clues-is he hot or cold? Does he need a blanket? Does he have a fever? I struggle to interpret his inaudible whispers and weak hand signals-Water? Pain? Hunger? All I want is for him to want for nothing. To need nothing. To feel no pain. To have no fear. I'm such a failure. I miss his eyes. I miss his little voice. Oh who am I kidding? We haven't heard his real voice for months, but I even miss his whispery voice. I miss his laugh. Halloween is less than 2 weeks away and our jack o'lanterns have already gone moldy and been thrown away. It a good thing I decorated and carved early. At least I got that right. *** Did I write that I am a failure? What I meant to say was I have failed. That is truth. I have failed to meet his every need. To have him never know want or pain. I did fail. I am ...

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 s...

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, tak...

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...

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...

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? Li...

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 s...

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.  Tree-climber 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 tr...

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 betw...