The Back-story (WARNING-really long)

The Back-story (WARNING-really long)

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.

  • Lisa
    Posted at 07:16h, 22 August

    Love and hugs, my friend. <3

  • Mo
    Posted at 09:10h, 22 August

    xoxoxo Prayers, tears,love and hugs. Thank you for eloquently sharing. It is important that those involved with children's health know they are treating families and friends too.

  • Taxmom
    Posted at 13:17h, 22 August

    Thank you so much for having the grit to post this. Seeing Sam and the rest of your family at the band picnic on Friday was gut-wrenching and your blog helps remind us of the Sam behind the wheelchair and the tinted glasses: an enthusiastic third grader who is determined to enjoy life as much as he can, and of course that includes hanging out with his brother and sister and the High School band! Daniel is loving the sax section this year with Ben and Abby. Your whole family is in our thoughts. -Katy Ayer (aka Taxmom).