Mystic River

We have now moved our command post to an MGH subsidized floor at a Somerville hotel on the banks of the Mystic River. The hotel room is not bad, first flat screen tv I have ever seen in a cheap hotel.

This afternoon Orion got his Neulasta injection, designed to lessen the amount of time that his white cells are gone. The head nurse was scandalized at the rapacious insurance company and finally got the $4000 cost down to $250. I tried getting a photo of the lovely blue syringe in action but technical difficulties thwarted me.

The Prince continues to feel and look good.

Best news? Sally came out for a visit!

I learned two things today

1. Always take the unmarked service elevators. No visitors. Just your own personal express elevators from the cafe to the eighteenth floor and Orion.

2.do not go down late for breakfast. No food except white things- cream of wheat and hard boiled eggs.

Orion is still great. Cheery and in the moment. Still eating fine. Looking forward to driving to the hotel this afternoon after the Neulasta injection.

Snowing hard here, perhaps six to eight inches. Rounds just came by. Next time you see your doctor ask if they actively participated in rounds. If they say no run away.

In which we find a new home on Beacon Hill

Here is Orion, possibly sideways, looking great, feeling good. No nausea. Last chemo for this cycle is in an hour. More Etoposide. Then tomorrow he gets a shot of Neulasta and then he is free man. Well, not exactly free. Next Monday and Thursday he gets lab work done as they watch his white cells and platelets fall. Same the next week. Then we wait. As they rise high enough to knock them down again. His life for the next few months.

Good news on temporary housing for us in Boston. We will stay the next ten days at an MGH sponsored hotel floor in Somerville. Then we move to a furnished two bedroom on Beacon Hill that we zeroed in on this morning. Historic and folkloric brownstone where Paul Revere's horse died. It looks great, orion's bedroom looks out onto the cobblestone street. Nice little kitchen, better Internet than we have in Ashfield. Ten minute walk to MGH. I am feeling better!

Window scene at night

Here is why we do not live in Boston. I would rather drive in snow. Oh wait they have that here too.

Orion is getting his second chemo sack of poison. He feels great, no side effects yet. He even claimed he felt better today than he has in a while.

Many visitors of the medical sort. Rounds with ten or so students, half of whom looked sick and frightened, the other half curious, open and friendly. Future MGH doctors I hope. A social worker came to help with finding an apartment and to check on our despondency level. Neuro-endocrinology visited and then O was taken off, with me, to see the neuro-ophthalmologist who was delightful and reassuring.

Okay his chemo session is over as his dinner of spaghetti and sauce, or is it brains?

A Night At The Hospital

Orion slept well, or at least as well as an adult child can sleep with one's father sleeping and snoring behind a curtain. I stayed the night with him, anxiety filled fellow that I am. The nurse offered me the other bed so I went with it. My first time sleeping overnight in a hospital since I was born nearly 59.5 years ago. It was comfortable and quiet and I could even reach out a peek behind the curtain and see sleeping Orion. There were no problems overnight. Today we look ahead to pediatric rounds, Dr.Ebb, perhaps some tests, more blood draws, a visit from social work to help us find an apartment nearby.we should end the day with another Infusion, this one two hours of Etoposide.

The Chemo begins

Using protocol ACNS0122 Orion started chemo this evening with an infusion of Carboplatin, 600mg/m2 for an hour. This will be followed by 162mg of Etoposide. He looks great, says he feels fine.

We came in last night, opting to drive early to avoid the latest storm. A lovely breakfast at Finagle Bagle, a stop at the criminally priced Whole Foods, a check with a realty office and back to the hotel room for few hours of Orion napping. Then it was Nurse Steve's duty to apply a piece of Saran Wrap on the port that had been installed last Friday. Orion had schmeared some topical Lidocaine and we needed to cover it. I sealed the wrap with tape and off we went to lunch.

When we got to Dr. Ebb's office the nurse laughed at my makeshift job and suggested the product stick and seal wrap. Then the doctor gave us an armful of 3M Tegaderm for the future.The nurses were scandalized. We had a long chat with Ebb and the radiation oncologist McDonald who has taken a special interest in our progress, I suppose because we end with her sometime this summer in the Proton Therapy Center.

The pediatric oncology nurse escorted us up to Ellison 18th floor pediatric ward. He ended up in a double alone for the time being withbthe wonderful view I posted below.

The view from Orion's window this evening.

Orion moves up in the world- going from neurology on Ellison 12 to the 18th floor with a view of the Charles and MIT.

Orion thinks life here is a beach....

Each of the pediatric examination rooms had a theme. Orion could not decide between Sponge Bob and Barbie so they gave him the beach.

Prep Day

Orion and I arrived at MGH before 7am and reported to the Ellison 2 waiting room. The area soon filled with patients preparing for various outpatient procedures. Orion answered the usual questions, changed to a hospital gown, and got an IV. By 8 he headed off to have a port implanted. (For those who don’t know, this is how the chemo will be administered, blood taken, etc., without sticking him repeatedly with an IV.)

While he was gone, I sent a note to Dr. MacDonald asking lots of questions about next week. Dr. Allen had been very clear both about what the chemo protocol should be, and that pediatrics should be in charge. I wanted to know if MGH was on-board. Immediately I heard back that everything was set and we would see her and Dr. Ebb, the pediatric neuro-oncologist, later today. Also, as soon as Orion recovered from the port procedure, we should head off to get a MRI.

At 9:30 I was taken to see Orion in the intermediate care recovery area consuming a breakfast of cereal, muffin, juice, and milk. He said the procedure was no big deal. I was disappointed that I can’t see the port. It’s covered with a bandage until Sunday. He got a credit card like card that identifies his port type. I hadn’t realized that this tells the MRI folks that it’s a port that is safe to be MRI’d and they can use the port to insert the contrast dye in the future. As I told Orion, he’s taken the first step toward becoming a borg.

Once he was rested, Orion dressed and we walked 200 feet down the hall to the MRI waiting room. There he changed again, and headed in for 1.5 hours of spinal MRI. The doctors didn’t think the first MRI was clear enough. They want to be positive whether there are signs of tumor on the spine. Even if they think there are not (and that’s their expectation), they will take scans after chemo. If they see change, that will tell them that there was tumor and that area should be radiated.

While he was gone, Dr. MacDonald’s office called again and told us to go for a baseline hearing test at 2. (After each round of chemo, they will recheck hearing, and if it’s being impacted, they will change drugs.) So we had lunch and then walked down the street to Mass Eye and Ear. The hearing test was quick and easy and the technician printed up the results for us to take to Dr. MacDonald.

Now off to the Proton Therapy Center. Are you getting tired? We are! Dr. MacDonald told us that the MGH doctors agreed with Dr. Allen’s advice and Orion would be treated by pediatrics. Here’s what the big deal was. At MGH, pediatrics ends at 18. Even though it makes sense for pediatrics to treat Orion (since they see 15 such cases per year and adult neuro sees one), pediatric administration didn’t want to give up one of their beds to an adult in case they needed it for a child. Dr. Allen’s stature added enough weight that permission was granted. Orion will be on Ellison 18, the floor for older kids…6 and up.

Dr. MacDonald led us to the Yawkey building to meet Dr. Ebb and his staff. Like every doctor we’ve met so far, he acted as if he had all the time in the world for us and Orion was the most interesting/important case he had. He walked us through the entire chemo protocol (2 different sets of chemicals in alternating rounds), plus all the work they do to monitor and replenish white blood cells, red blood cells, and platelets. They also check vision, hearing, cognition, and treat nausea with each round. I find myself thinking of Star Trek IV: McCOY: We're dealing with medievalism here! ...Chemotherapy! Don’t leave him in the hands of twentieth century medicine.

Now it’s 5pm and we’re all set. Orion will be admitted for the first round of chemo mid-day Tuesday. We fortify ourselves with drinks – coffee for me, a strawberry smoothie for Orion – and head out into rush hour traffic going west. Amazingly our timing is perfect and we swoop by the Springfield train station just as Nate and Carrie arrive, up from Baltimore. Seeing them immediately raises Orion’s spirits. We arrive home to a comfort meal of roasted chicken that Steve's prepared, give a rundown of the day, and off to bed.

A Video from MGH's Proton Therapy group

After Chemo Orion will spend his time here, every day for a month. Physicist meets Physics.

Okay the previous post sounded too ominous so read this:

http://cancerguide.org/median_not_msg.html

In which we turn on to a darker and longer road.

On Thursday the 13th of January we headed down to New York for a second opinion consultation with Jeffery Allen, Director of Pediatric Neuro-Oncology at New York University Medical Center. We three were cheered by the smoothness of the morning commute. We left behind the 20 inches of cold snow in Ashfield and headed south in two cars, leaving my car in Northampton. Our plans change nearly daily as new information comes in and Orion had already been scheduled to have a mediport installed (and I use that word deliberately) at 7 am on Friday at MGH in Boston. So we hatched a plan to have Sally and Orion do that and have me return to Ashfield. There was little traffic and after fumbling around Old Greenwich for a parking spot we jumped on a train to Grand Central with a minute to spare.

We ate our sandwiches in silence looking out at the bright blue skies and the increasingly dirty and crowded streets. Walking out from GCS we headed south down Lexington, catching glimpses of the Empire State Building and the Chrysler Building gleaming in the sunshine high above everyone's heads.

When we reached the pediatric oncology building of the Langone Medical Center of NYU we were jarred once again by Orion in a pediatric setting. He has hair sprouting from his face and he towers over everyone else in the waiting room, including the adults.

There are plenty of people to study and smile over. There is an Asian couple, their baby son wearing a T-shirt that says "Big Boy" (he was obese) being fed cookies and apple juice by his fussing mother and completely ignored by the stylishly coiffed dad playing video games on his phone. Later a nurse came out and jabbed Big Boy with with a Chemo IV line. Breathtaking to see.

Another couple, perhaps in their 30's sat apart from each other. The woman, apparently suffering from brain cancer (her head wrapped in a stylish but otherwise not quite right black hat) talked on her cell phone while her orthodox husband kissed and stroked his payot hair locks.

A very tall and thin Hispanic boy, perhaps Orion's age, stood with his Chemo IV tree gripped in his hand.

Another couple nervously stuffed cupcakes and juice into their young daughter, bound in a wheel chair, telling everyone that she was constantly hungry.

In a side room a manic clown raced around trying to amuse all the children, dressed in those typical bright colors and exaggerated sizes so appealing to the dreaded clowns. As he finished his routine a woman dressed as a faerie appeared, while volunteers, older women, variously looked like Mother Westwind or simply carted around baskets of sweets to ply anxious children.

A woman describing herself as a social worker came out and grabbed us offering help with abuse and finances to our speechless faces. Perhaps we looked like country folk, not to be confused with the disadvantaged. She finally got that we were sane, non-suicidal, and financially equipped to deal with brain cancer.

Finally we were brought into Dr. Allen's offices but were first subjected to a pleasant enough, but not up to the energy and competence we were used to, pediatric neuro-oncologist Fellow from Montreal. Overhead a vent fan made loud and annoying noises that she seemed not to hear.

Allen ushered us into a family room were we all watched in amazement and horror at his frame by frame analysis of Orion's brain and spinal MRI. He started off dismissing some of the concerns at MGH on spinal aritfacts but then became animated with the brain images. Here we saw the whole plan of the evolution of the human brain from the hypothalamus and pineal glands at the brain stem on out to the magnificent cerebellum and cerebrum. Then he traced the outlines of Orion's brain cancer and its beginnings on the Pineal gland and spreading tendrils into the brain itself and on into the ventricles. Large and disseminated. Cancerous in all its aspects.

He moved on to an analysis of the cerebral spinal fluid taken with a lumbar puncture done on Monday. The worst diagnosis of non-germinomatous multiple tumors.

He cheerily turned his smile to us and said, not to worry, these can be cured but you will have to be tough and determined and give no quarter and no comfort to these enemies. His good cheer that more than fifty percent of such cases are "cured" gave the three of us little comfort. When asked about the deleterious effects on the brain he said, you will still be smarter than 90% of Americans. Small or no comfort there.

So now we are faced with up to six months of the strongest chemo protocol and three months of radiation with only a flip of the coin odds for success.

Orion, ever the brave and gracious man, hugged me as he left for Boston, saying, "thanks for everything you have done for me so far". I was struck that he now seemed taller than me.

Google this - NGGCT

Dr. MacDonald called last night. The spinal fluid they collected shows that Orion does not have a pure germinoma. Instead it's called nongerminomatous GCTs. This is even less common than germinoma so there's even less data on treatment. Likely, they will add a third chemical to the chemo, and have to raise the radiation level. Disheartening news.
But this is one of the reasons that we are headed to New York today. We will have a consult with Dr. Jeff Allen, a pediatric neuro-oncologist. He'll present his interpretation of Orion's case and his treatment suggestions.
Back to MGH tomorrow.

The Money Shot or The Last Full Measure of Devotion

Today was my and Orion's 12th day in Boston and its environs in the campaign against his cancer. We managed to avoid stopped traffic congestion but I was weary from another commute on the Pike. This time we went to a sperm bank with the intention of opening an account and Orion making a deposit. We have been told clearly that the chemo and radiation are likely to render him incapable of producing viable sperm so the time had come to set some aside.

I have never met anyone so clear headed and calm as my son Orion. He is equanimous beyond all measure. Imagine yourself sitting in the dowdy waiting room while your child collects his own DNA for preservation. It made me think of the effort to preserve the last good seeds of the world's plant life as we hurtle toward extinction.

They said to him give us a call and we will tell you how you did in an hour, so speeding westward on the MassPike he called. When they told him how many vials he had produced he said, could you repeat that? He underestimates and understates where I exaggerate. In this we were in agreement.

The game is afoot

I am sitting in the MRI waiting room. Orion has just gone in, much earlier than the 5 pm that he was scheduled. How could this happen? Our chief neurologist, Fred Hochberg got impatient with the progress and picked up the phone. So far today we have been told terrible and ugly things that were coming but also told that Orion would get cured and regain all mental acuity. While not diminishing the difficulties of what is ahead in the next few months he was told to expect to be able to go to grad school in August.

When asked about his mental state Orion said "I am all right, I am just letting it wash over me like some great wave".

So lots of blood drawn, MRI, possible baseline hearing tests, spinal tap for CSF, trip to NYC for consultation. A long day and evening ahead.

Politics and Protons

We took at trip to Boston yesterday to start laying the groundwork for Orion's treatment over the next six months. Cold and clear before another storm we traipsed the Freedom Trail with an unflagging guide (Sally). We even spotted a Boston terrier on the Common but it wasn't half the beauty that our little Darcy is. My favorite moment of the field trip was when Orion was moaning over how bad the tea was at Bruegger's and over his shoulder we could see the historic hall where Bostonians met to rally against the tea tax.


Dealing with the surgeon Ziv Williams is always a delight to me because he seems so genuinely fond of Orion. The fact that he found some physicist to help him with cognitive questions to test Orion after failing to stump him with all the standard ones was a kindness that Sally and I needed. Since Orion aced those as well I expect another ramp up in April when we see him again.

As usual we are pleased and comfortable with MGH's teaching hospital methods of involving teams of doctors ranging from senior attending researchers, clinicians, rank MD and PhD Fellows, and visiting doctors. The entire neurological and oncology staff seems thrilled to be helping Orion who they constantly refer to as "extremely high functioning". The fact that he is on the verge of an Honors physics degree from Swarthmore and has plans for grad school excites them in a way that lengthening the life of an 80 year old guy with prostate cancer or even, dare I say, a child who is all promise and no track record cannot.


This seemed all the more apparent when they invited us in to see the proton accelerator, a monstrous machine, a deus ex machina, where the Harvard cyclotron accelerates protons to 70 to 250 MeV and smashes them into the cancer cells, sucker punching their DNA. Orion, junior physicist, interested in high energy particle physics, meeting them personally.

His biology has failed him and physics will save him.

TMI (Too much information) or should I say TMR (Too much reality)

Thursday we had two appointments. The first was with Dr. Williams, the neurosurgeon. We had been concerned about how the incision was healing. Dr. Williams asked us to get a CAT scan and bring it to him. First they said come at 4:30, then they said he has surgery, come at 11:30. Then they said morning OR was running late, go to lunch. When we saw him in the MGH cafeteria, we knew he’d be in his office soon, so we rushed back. These guys don’t get much time to take a breath.

He said to Orion, “What’s your name?””What’s today’s date?””What’s the difference between a boson and a fermion?” We all laughed that he’d done his research so he could ask Orion a physics question. Orion did fine on all.

The good news is that the incision is healing fine. The ventricles show no build up of fluid. When I asked about the short-term memory and concentration issues Orion’s been having, he was unconcerned. He expects most to clear up in the next couple months. But I did think he tried to tell us that Orion was alive and had a treatable cancer and you can’t have everything.

Since we had 3 hours until our next appointment, I conducted a forced march of the Freedom Trail with readings at each stop. I love the Freedom Trail, but it was very cold, so after an hour we stopped for warm beverages and then headed back to the hospital.

The next appointment was with Dr MacDonald, pediatric radiologist. We thought we’d be talking to one doctor, but no, she brought in 2 members of her team and invited the neuro-oncologist Dr. Hochberg. Remember this is a teaching hospital. They have presented Orion’s case before 2 neurological boards and a conference. They sent his data to a pediatric neuro-oncologist in NYC and they want us to go see him. They talked to us about the options of chemo and radiology, and radiology alone. They recommend the former because it allows lower levels of radiation which they think means lower risk of cognitive damage now, and lower risk in 20 years of cognitive decline or other side-effects of radiation. It’s not unexpected to have “reduced processing speed” after radiation treatment. It certainly pulls at my heartstrings to have Dr. H suggest banking sperm.

Dr. M walked us through viewing the MRI images so we could see the tumor. She described how a template is made so that the radiation is directed in exactly the right shape. We had a tour of the room where the treatment will be done and saw the accelerator. Very cool. More to come from Steve.

Next is putting this all on a calendar: trip to NYC, another MRI, 3 rounds of chemo, more scans, 5 weeks of radiation. And there are still blood tests and occupational therapy in W. Mass.

We ended our day with a lovely dinner at La La Rokh. Thanks for the suggestion, Susan.

Nothing new

I know people are worried because they aren't hearing things, but this is a time for healing and planning.

Orion has had 2 out of 3 blood tests to make sure his sodium levels are stable. He's had another CAT scan. He had his first session with the occupational therapist who will be helping him learn techniques for doing schoolwork, since he may find it more difficult than his historical method of soaking up information. We'll soon talk with the radiology folks and the neuro-oncology team and learn the treatment plan.

I talked to Swarthmore - he will not be on campus this spring - and the disability dean has told me not to worry, she'll handle everything. And she has. She checked with the registrar and determined that he needs 1 additional credit. She's checking with the professors to see which is the best candidate to do remotely. She talked to the physics professors on what he needs to do to complete an honors degree and what to do for a fallback regular degree. She says she can hire students to pack up his dorm room. Pretty amazing. I guess that's what we've been paying for!

Orion's friend Will was visiting his sister at Williams and stopped by our house with his family for a visit. He said he could bring a carload of friends from Swarthmore to visit during the term. Orion's girlfriend Jen is here through the weekend. What fun, going to doctor appointments.

So we're adjusting to a life of appointments.

Preparing for Battle

Steve just shaved Orion's head and Sally is now washing it. A tradition as old as the Spartans.

Ē\ tā\n ē\ epì tâs

Happy New Year

We're home. Orion slept from when we left the hospital to 9 this morning. We've had breakfast and hope to experience a little bit of normal life.
All of your support and caring comments have been wonderful.