Author: Sabrina

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?

In hindsight, Sam’s day today was not significantly different from yesterday.





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 his inability to move his arms caused John to give him a dose of Ativan and call the hospice nurse for advice. John decided that Sam really needed to rest so he put him in bed and that’s where I found him when I came home. His breathing was easy and regular, and within moments of me sitting down Sam opened his eyes and said, “I want to get up.”

People are always asking me how I am doing. Today was one of those days when the grief keeps coming in little waves and bigger waves. And yes, I am already grieving. I grieve the loss of Sam before cancer changed him-busy, smart, artistic Sam. And tonight his big brother is feeling the pain of loss and fear of further loss as well. How can I comfort Ben if I can’t comfort myself?

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 soloist is done even though the song isn’t. And then again, one claps when the song is over. That’s pretty complicated, especially the clapping for the soloist part. The thing I’m not telling you (well now I am) is that he claps late. Not late like, “Oh, look. Everyone’s clapping. I’d better get on board.” But late like, he needs more processing time late. He gets it. He’s with us. He’s paying attention.

He only took a couple of short naps. He really was awake most of the day. He was sleepy, but awake.

The Bad

Sam awoke at about 1 this morning, and I’m fairly certain neither of us really went back to sleep.

Rising from a seated position, walking, and navigating stairs seemed harder today than ever.

He was really sleepy all day. That really scares me. I hate it.< The Poopy

He pooped his pants today. I don’t think he knew it was coming, and I’m not sure he knew it had happened. It happens once every few days. 8-year-olds shouldn’t poop their pants. This is what cancer does.

Completely unrelated to Sam, except that it did pull me away from him for an entire hour, Chance got into some mischief. Those of you who know us, know that Chance has an interesting history-picked up as a stray, adopted from animal services, presented with myasthenia gravis right around the time Sam was referred to hospice (Jeffers have impeccable timing), and eats anything and everything at his nose level (table height, conveniently for him) and below. Well I guess I didn’t educate our guests on his habits because when we were at BSR Chance got into Aunt Val’s luggage and consumed the following: a can of honey roasted peanuts, a large bag of cashews, 1/2 cup of M & Ms, and a Granny Smith apple. He also tore to shreds an entire box of tissues and chewed on a book about the Yankees. We all know that chocolate is toxic to dogs so after calling the vet and discussing the situation a bit I brought Chance to the vet for a possible induction of vomiting. Turns out a 71 pound dog consuming 1/2 cup of crappy chocolate is not cause for alarm or induced vomiting, so Chance got to keep his M & Ms, and is totally fine. In fact, I don’t think I’ve ever seen him so friggin pleased with himself. He’s lying next to me peacefully and odoriferously breaking wind as I write this.


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 for a marathon and logging her miles for Sam. People are generous and kind.

We got some interesting mail. We received Sam’s STAR test results. Leaves me wondering what he could have done if he didn’t have cancer and hadn’t missed so much school? What would he have accomplished in years to come if he had been cured? Stupid f-ing cancer.

I also received some registered mail. It was a notice that my leave has been approved. That’s great, but I still haven’t been told what my placement is. When I go back to work, where will I be? What grade am I teaching? Reading the fine print at the bottom of the approval notice, I spied the notation, cc: . Beneath that, in addition to several names I know from HR, were two other names. Principals’ names. An Interim Principal, and a Principal Principal. I know which school that is (maybe you do too). I like that school. I’m happy about that school. Strange to find out the way I did, but there it is.

Around the time the mail arrived Sam was napping. Post nap we saw Mrs. O-Kindergarten teacher to all 3 of our kids. She always brings grapes, good news, and sunshine. While Mrs. O was visiting, the East Coast Jeffers arrived.

We are surrounding ourselves with family and friends right now. It feels good. They may not truly get what we are going through, but they care and with that I feel less alone and scared. Some of you have asked about how to help-you are already doing it. If you are messaging, texting, posting, visiting-good job. Many people want to give us food. You want to bring meals. It’s a way to help, I know, but hold off. The time will come. Right now, while Sam wants to eat, it’s my job. I’m his mom.

About the King of the Jungle, he’s a gift from our talented friend Mari. She gets Sam’s make-believe world where all his animals (don’t call them “stuffed”) are alive, have names, and need to eat. King came to learn how to live from wise Prince Samuel. That’s like three posts right there. Patience.

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, anyway? Sam had a fruit salad, and another nap.

Today was starting to look like yesterday. I was afraid he would sleep all day. You know what that means, right? Once he mostly sleeps his days away it’s over. So when he’s tired, so tired he’s asleep sitting up, I want to tell him it’s ok to sleep. But that’s kinda like telling him its ok to die. It’s not ok. He needs to stay here as long as he can.

Then the coolest thing happened. First of all, Sam woke up. He requested bubble blowing in the backyard. While we were there he wanted avocados from the neighbors avocado tree (it hangs over the fence a bit), and apples from the apple tree. Then John came outside to tell us that Chef Jacob had emailed us back. He was coming over for lunch and bringing pizza!

Well there was no more sleeping today. Don’t get me wrong, he needed a nap, but wanted to stay awake for Chef Jacob. Chef Jacob brought Ranch/BBQ Sauce/Chicken/Bacon/Carmelized Leek Pizza  and we reciprocated with cookies.

We also enjoyed the company of our friend Rachelle and her boys, and we pressed handprints into clay-Sam’s and ours, and even a Chance paw. It was precious and fun.

Then things got kind of crazy. My parents arrived, so did Rabbi Linda…I’m not sure in what order…to bring in Shabbat. Sam was not overwhelmed by, what to me is, a house full of people. And a barking dog that gets way too into sniffing-there.

Rachelle had to go, and Jacob was piecing things together: “I saw the mezuzah on your door frame. Then your mom brought in a challah. Now there’s a rabbi. So, your Jewish?” “Yes.” “So am I.” Wow.

It’s like the world is caving in on me in good and bad ways all at once.

Jacob, the Jewish chef, couldn’t stay for Shabbat. He had to get back to the restaurant. It’s Friday night, after all.

Sam directed Rabbi Linda through her service: yes to this song, no to that one, no more songs-time for candles, imaginary grape juice, and challah (cause Mom promised after Shabbat there would be more pizza).

And the guests kept coming. Mrs. Ehrler brought flowers, fruits and veggies from Jerry at Rutiz Family Farm, and Mrs. Medina brought Pasta alla Formiana (duh, Giada) and chocolate cake. By the time we got to the cake (at 6:15) Sam’s eyes were basically closed.

You might be thinking we overdid it. I know we overdid it. But I’m trying to squeeze a lifetime in here. A lifetime.

As promised, the King of the Jungle-have never seen Chance so freaked out.

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 today and was definitely sleepier today than yesterday, but he still rallies for meals, snacks, and guests. There’s really nothing more to say. I’m grateful for the support (and distraction) of friends and family. That’s enough for now.

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 lunch he ended up under the lunch table and didn’t know why but kids were laughing at him. No adults ever witnessed one of these episodes, including me and my husband.

On September 18th a P.E. assistant witnessed Sam fall to the blacktop and have a seizure. We saw his pediatrician the next day. His pediatrician made a referral for an MRI and told us not to worry-99% of the time this is nothing.

On September 20th Sam came to me during my afternoon recess duty (I was a 1st grade teacher at his school last year) to tell me he had had another “funny feeling” at P.E. that day. This time he had wet his pants-a sure sign of a seizure. I brought him to the office and called his dad. John took Sam to the ER (it’s what the school nurse recommended-she said the ER is the back door to treatment), while I finished out my school day.

When I arrived at the ER Sam was having an MRI. Some blood work had been done, maybe an EEG, and after the MRI there was a chest X-ray. Then we waited. I wasn’t worried. I figured it was epilepsy and we could handle that.

The MRI revealed a growth on Sam’s thalamus; a glioma the ER doc said. Funny we should get the one ER doc who did his training at Children’s Hospital LA. I really can’t tell you how I felt at that point. The same feeling’s been repeated with every post-MRI doctor’s visit. I feel sick, numb, weak, powerless. Dr. Young made arrangements for Sam to be evaluated at CHLA, and to be transported there via ambulance.

I’m not sure if I mentioned that Sam is smart. Really smart. His only question for Dr. Young was, “Is this life threatening?” Dr. Young answered him honestly-yes, but many things are life threatening, and we can often treat people and they are ok.

I rode in the ambulance with Sam for the 3+ hour trip to LA. He slept most of the time. He wasn’t on any meds, he was just tired. I still hadn’t seen a seizure or any other symptoms. I held onto a tiny sliver of hope that Dr. Young was wrong. I thought about Sam. I thought about my other 2 kids. I thought about how I had JUST gotten a real teaching job for the first time since finishing my credential. I assumed that as a temporary teacher my district wouldn’t tolerate any prolonged or frequent absences so I figured I would lose my job and along with it our health insurance.

We arrived at CHLA and were assigned a room and a nurse and essentially went to bed. Every 4 hours through the night (and days to come) Sam was evaluated by a neurologist.

Friday, September 21st:

In the morning we met with neurosurgery (if you can call it a meeting- they pulled us out into the hall). The head of neurosurgery told us there was nothing to be be done for Sam. We were told he would certainly die from this as they could not operate on this part of the brain. We were not told how much time he had, but that we should prepare for the death of our son. We were also advised to tell Sam. We did. It’s the worst thing I’ve ever done. I want to puke just thinking of it now.

I can’t remember how we spent that day. I guess I was in shock. Sam just wanted to play in the play room. I couldn’t stand to look at all those sick kids and their parents and long to be in their shoes-parenting a child in treatment a year or more post-diagnosis. I wished so hard we could be like them. I believed then that Sam would be dead within the year.

We had this intern or resident, Dina, who kept coming in and checking on Sam. She didn’t understand why we were so sad. We explained that neurosurgery had already told us Sam was dying, so what else were we to feel? She said, “Talk to oncology. You haven’t talked to oncology. Don’t give up.” We had no clue what she meant.

We rounded out the day, this pre-Shabbat day, by playing on the outdoor playground, welcoming my mom, aunt, and other 2 kids, Ben and Abby, to the hospital, talking (via phone) with our rabbi, and hosting a Friday night service in our room. I don’t know how I held it together as I heard mishaberach for the first time said for my child. Just as we finished our service, just as the rabbi said, “There isn’t enough wine in the world,” oncology came to see us.

Dr. Brown took John and I to a small meeting room down the hall and described how although the tumor could not be removed, he believed it could be treated.  It was a low-grade (grade 2) tumor, so it was slow growing. He didn’t promise us a cure, but he thought he could give Sam time-like years. Dr. Brown described a weekly outpatient chemotherapy that would last 18 to 24 months. He said that John and I would return to work, and Sam would return to school. Aside from those weekly trips to the hospital, and daily meds to keep seizures in check and infections in his port (oh yeah, and the port a cath in his chest) at bay-Sam would live a normal life. In case the chemo didn’t work he also described all the many treatments (radiation of different sorts, other chemo drugs, clinical trials) that we would have at our disposal. He gave us hope. We returned to the room jubilant.

In the days that followed there were more MRIs, an EEG (finally saw my first seizure), and a surgery to insert Sam’s port a cath. On Tuesday, September 25 Sam had his first chemo. The next day we went home with orders to return in a week for more chemo.

From September 25 until late April 2013 Sam received 2 alternating chemo cocktails: vincristine and carboplatin, alternating with irenotecan and temozolomide (a pill taken daily). He had an MRI December 26th that showed no change, and another in mid April that revealed some growth and a change in the tumor from low grade to “medium” grade-3, I guess (brain tumors are graded: 1, 2,3,4- low to high grade, or slow to fast growing). Chemo was changed to vinblastin, which was supposed to work well on these medium grade tumors. Vincristine and carboplatin made Sam a little nauseated. The irenotecan made him really sick-nausea, puking, cramping, and diarrhea. Temozolomide dropped his white blood cell and platelets counts so low we had to take a few weeks off of treatment from time to time. The vinblastin had virtually no side effects. He didn’t lose his hair. He has amazing hair.

Throughout this period Sam’s only symptoms were seizures (which were controlled by medications), and a tremor in his left hand. He missed school once a week but maintained good grades in all subjects and continued to learn as I would expect an advanced student to learn. I continued to work, missing a day every week or every other week depending on the chemo course Sam was on. Sam took his meds with very little complaint, and except for the poking part actually seemed to enjoy the weekly road trips to Santa Barbara or Los Angeles. Sam was always a favorite of doctors and nurses. At one point Dr. Larry Franks expressed concern that the doctor that headed up the neurooncology team was going to steal Sam away from him. When he laughed staff would poke their heads in the door to see what the hell could possibly be so funny on the hem/onc floor.

Sam’s siblings, Ben (16) and Abby (14), have also handled Sam’s illness with grace. For the most part they are probably nicer to their little brother than most 14 and 16 year olds would be and they’ve maintained stellar school records and continued involvement in music and temple. Both maintained GPAs over 4.0 and Ben scored all 5s on his 4 AP tests.

In early May Sam seemed foggier than usual, started to have some trouble with balance, and began to have seizure warnings (which had all but disappeared once he started on Keppra in September). His oncologist was concerned and was considering moving up his MRI which was scheduled for July. On May 25th Sam had a seizure for the first time since early October. An MRI was scheduled for that Wednesday.

The Wednesday, May 29 MRI showed the original low-grade tumors had grown beyond the thalamus towards the front of Sam’s brain (explaining the fogginess and seizures), and a new high-grade tumor appeared at the back of his brain. Radiation was no longer an option because the tumors were too massive and where they are in the brain would cause too much collateral damage. There were no clinical trials open for this particular type of tumor (a low grade tumor that changes to high grade). Dr. Brown said there was nothing more he could do for Sam. He suggested a chemo that might shrink the tumors a bit for a little while to buy us some time with him. At most he thought that might work for a few months. Then Sam would need palliative care for seizures and pain, and he would die. Dr. Brown made referrals to hospice.

I felt the same way at this latest bad news as I had when Sam was first diagnosed. Every MRI has brought bad news and sick feeling of dread. We never got ahead of this thing. We never shrank it. It was just suckage, after suckage, after suckage.

Perhaps the treatments he received in the first 7 months did some good. Maybe the thing was at least slowed down. Sam’s quality of life was excellent up until late May. We felt pretty normal most of the time. I had moments of doubt and fear, but I had hope too. I constantly replayed the words of the nurse practitioner on Sam’s team: in the 20 years she worked in the brain tumor program they only lost 2 kids to tumor growth. It’ll be 3 now.

We elected to begin Sam on the non curative chemo-avastin and etoposide-immediately following the May 29th MRI.  He also didn’t return to school, and I did not go back to work (oh, in the middle of all this, as a temporary teacher I had to reapply for my job. I was not picked up in the first round back in May. In July-after a couple of school board member and teacher friends made some noise with HR-I received and offer and last week my request for leave was approved).

On June 2nd Sam had a massive 3 hour seizure requiring a visit to the ER via ambulance. As a result of that seizure his oncologist placed him on steroids and increased his Keppra. His seizures are under control now, but the steroids have caused him to gain at least 25 pounds. I stopped counting. He has a hard time getting around now, in part, because of the extra weight. We limit his food but he’s so inactive it does no good. He just wants to eat constantly. He began to lose his hair on this course, but it didn’t make him feel sick.

Since mid-May he has become increasingly symptomatic-He has trouble walking because of a lack of balance and strength in his legs. He needs us to lift him into bed, onto any piece of furniture for that matter, and into the car. If we are walking more than a hundred feet or so he uses a wheelchair. He can’t dress himself or bathe himself. He needs help going to the bathroom and often doesn’t make it. I’ve installed rails on the toilet. His thinking and speech are incredibly slow; he responds best to yes and no questions. He can still write but it takes I’m forever, so he never writes more than a few words at a time. Sometimes he won’t respond at all. He’s sleepy most of the day, and will usually nap once, but he is fighting this so hard. He doesn’t sleep well at night-well, from 3:30am on he’s basically up and restless and needing to pee. I sleep with him, so I get up with him.

2 weeks ago our hospice nurse said Sam was “on the cusp of a crash.” With a resting heart rate of 140 and respirations of 40 she felt certain the beginning of the end was near. Anywhere from 1 day to 2 weeks before death a brain tumor victim will fall into a state of complete unresponsiveness and sleep-that’s what she meant by a crash. That’s what’s next for Sam.< So we wait. Sam plays on the computer, watches TV, eats, looks at cookbooks, and plays cards. We go for walks (with him in the wheelchair), he likes to accompany me to the grocery store, and sometimes he wants to sit outside (the brain tumor has made him super sensitive to light, so being outside is uncomfortable for him). He still wants to help cook, but there's not much he can do. The tremor in his left arm is so bad he doesn't use it at all. He deteriorates daily. I am already grieving. I have trouble remembering the healthy Sam. This is a completely different kid I'm parenting, but I love this Sam too.