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. Brown
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.
