brain cancer

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 ocassional 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 ...

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...

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...

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 ri...

In hindsight, Sam's day today was not significantly different from yesterday.  Sleepy. Slow.   Wobbly. Quiet. He had a couple of naps, but that's not any new news. We walked with family on the Bob Jones-pushing Sam in the wheelchair. He accompanied us to the high school to pick up Ben and Abby. We watched a couple of Giada shows, had a few visitors (friend Penny, who is also mom to one of Sam's friends, Mrs. Whalley, who should be Sam's teacher this year, and Mrs. Graybehl, another 3rd grade teacher), and ate pizza for dinner. Sam also had a strange episode that was really scary for John (I wasn't home. I went for a run. I might not be doing that again for a while). As far as I understand, Sam was standing at the sink ready to wash his hands after going to the bathroom, but he couldn't get his hands to move up into the sink and under the running water. He said something like, "Why isn't it working?" His breathing was labored, and this coupled with ...

The Good When I'm in the midst of my day I tend to focus on the bad stuff that's happening-The Suckage, as I like to call it. However, every day there are moments that are good. I noticed a few today, and I think it's healthy for me to reflect on those and remind myself that we still have good times. We were able to go out for breakfast with the East Coast Jeffers. Sam is generally more energetic in the morning, and he loves food (thank you, steroids), so that was an excellent combination.  The entire family, including the East Coast Jeffers and the Edelsons went to see Ben perform with the BSR Jammers (the youth set of the Basin Street Regulars ). Sam enjoyed the music, he was aware that his big brother was on stage, and he clapped. I don't know why that's so significant to me; that he claps. Whoop dee doo. Babies clap. What's the big deal? Well since he claps I think that means he gets it. He gets that he's at a performance. He gets that you clap when a so...

I would like to keep tonight's post short. Am I capable of that? Probably not, but I'll try. Except for the vast array of visitors, today was much like yesterday in terms of Sam's sleep (or lack thereof), his difficulty walking alone, his inability to verbalize; in short the general downhill trend. He took one good, hour-long nap this afternoon and was asleep in his seat by 6:30. I have to walk with him and steady him. He responds best to yes/no questions and needs lots of wait time. This morning I got away for a short run with my friend, Deb. We ran down to the beach like we always do and got caught up in the midst of the Grover Beach Dune Run Run 5k/10k . People were cheering us on, clapping for us, stopping traffic for us, and offering water. It was really uncomfortable. Let's be clear, we didn't take any water, but I felt like I was trespassing. Later we had a sundae supply delivery by the Rojas family, and we met a new friend, Heather McKenna-who is training fo...

Sam had such a busy day. After waking a 3:30 to pee he couldn't get back to sleep. He's such a good sport. He stays in bed and relatively quiet (only asking every 15 minutes if it's time to get up) for a couple of hours. Then we're up for the day. Except today, like yesterday, by the time he's finished breakfast he's sleepy. So, he had a nap. When he woke up from his nap he said, "I want Chef Jacob to come visit." Chef Jacob is the executive chef at Lido. A few weeks ago Sam got to cook pizza, soup, and chocolate chip cookies with Chef Jacob in a penthouse at Dolphin Bay for friends and family. Sam just lit up that night in a way I thought he couldn't anymore. I told Sam that Chef Jacob was probably too busy to come see us, but sure, I'd email him. Then we had visitors! Sam gets up for visitors (and food). Mrs. Harlan brought me coffee and Mrs. Hickey brought Nanu Eggs. I think my mom came over too. I've lost track. What the hell day is it,...

Okay, today wasn't nearly as bad as I thought it would be. Sam slept far beyond his usual 3:30am wake up time. He slept until 6:30. Sounds like a good thing, but in hindsight it's not. Anyway, Sam was happy to participate in pictures on the front doorstep this morning. He was happy to ride along when we took Ben and Abby to the high school. Sam was fine with not going to school. That made it easier for me to keep him home.  Thanks to visits from friends and family (Trisha and my mom each came twice!), I got to shower, do laundry, and prep dinner (Sweet Corn and Basil Lasagna-yummy, but something about the order of the layers of noodles and cheese wasn't quite right. If I ever get to talk to Ms. de Laurentiis, I'll have to ask her what I did wrong.). It also made the no-school thing easier to swallow. And I still think Sam brightens when visitors come in (especially when they bring The King of the Jungle-Maybe I'll explain that one tomorrow). Sam took several naps to...

Written August 16, 2013 Before diagnosis Sam was a reader, writer, and artist. Lover of swimming, playing at parks, and listening to music. He was a tree climber and rock scrambler. He loved to annoy the snot out of his big brother and sister, but he also just loved them and worshiped them. His imagination was huge, and that was revealed in his writing, drawing, and play. He was wicked smart. Math came easily to him, and his reading was consistently above grade level. He was always a favorite of grownups because he could hold a conversation with them-he kept his listener engaged. In mid-August 2012 Sam began to complain of having "funny feelings" in his legs. Usually this followed him sitting on his knees for long stretches so we figured his legs had fallen asleep from lack of circulation. We told him not to sit that way. After he started 2nd grade (late August), he reported a few times that he had fallen at school, but didn't remember falling. For example once he said at...

Sam's been unsteady walking for while now. Not so unsteady that I felt I had to be a crutch for him, but wobbly. This morning he fell. Hard. He was in the living room, sitting at his table, watching a show (probably Giada at Home), and I was in the kitchen washing dishes. I heard a crash and rushed toward the source of the sound. Sam was sitting on his bottom with his back up against a dining table chair. He had gotten up to come see me in the kitchen and fallen so hard the whole table was shifted over. He didn't cry. He wanted to get up. His bottom and back were hurting so we iced for a few minutes.  Then he was fine. Except for the rest of the day he could hardly step without stumbling and swaying. He can't seem to figure out how to pick his feet up and put them down in way that makes any sense. This is scary. Now he can't be alone. Like a mobile baby in an un-child-proofed house he must be supervised at all times. He doesn't get that he can't walk, so he just...

Rather than using my personal Facebook page or Sam's Facebook group page: Sammy Rulz, Cancer Droolz to update friends and family on Sam's condition I've decided it's best to post in a blog.  This way if friends choose to know what is going on with Sam, they can click the link (which I will post on both my personal page and the group page). It will also allow non-Facebook users to read updates on Sam. So here goes... I named the blog, Enough for Now because I can't put together the right words to describe all this blog may encompass. I just knew I needed to get started. It's Enough for Now . As most of you should know by now, things are not going well for Sam. In late May we received news that his brain cancer was not responding to chemotherapy and the tumors were growing  in size and number. We were told then that we were out of treatment options and were referred to hospice. At some point I will probably post the entire history of his diagnosis and treatment, ...