The Sunbather

Orion and I were tickled by this photograph that I took in the clinic on Tuesday. Those are his black shoe shod feet as he lounges waiting for his blood counts to come back. The room is the one that I have pictured before, a scene on the shore.

But look carefully. What is real and what imagination? There are many delightful surprises. Click the image to make it full size.

The World is Reading

Orion's story is being read in these countries:

United States
Germany
Italy
Singapore
Canada
Jordan
Chile
Russia
United Kingdom
Kenya
Saudi Arabia
Indonesia
France
Australia
Ukraine
South Korea
Czech Republic
Poland
Netherlands
Iran
Vietnam
China
India
Brazil
Morocco
Malaysia
Iran
Mongolia
Romania
Latvia
Dominican Republic
Spain
Turkey
Aruba
Sweden
Serbia
Thailand
Pakistan
Moldova
Costa Rica



All of these readers know Orion or Steve or Sally. He is loved.

Another Day, Another Chemical

I just left Orion in the good hands at MGH for the night. He is in for five days taking chemo cycle number 4, Ifosfamide and Etoposide with some side orders of Mesna. All went well. The Etoposide always causes his blood pressure to drop at first and then his good body seems to say, "ah I know this" and responds, bringing his keel back to plumb. As I left I noted his roommate seems to need a nurse sitting by the bedside. She, Emily, is another skilled and caring nurse so I felt even better. Out in the hall I announced my departure to Orion's assigned nurse, our favorite Karen, and she said, oh, not spending the night with us? A tease. More of this through Saturday with release on Sunday.

Next week is rest and relaxation in the condo on Beacon Hill. Orion is looking forward to "wild meats of the world week", supplied by Savenor's, Julia Child's favorite butcher. I shall be the chef and waiter.

Window to the Soul, er Brain

We had a lovely time back home in Ashfield. Rachel came up from DC on break from law school. Darcy wants to move in with her.



Orion's eyeball! One of the more bizarre symptoms that he had and the one that the MGH doctors loved to check on is Parinaud's syndrome. The tumor compresses the tectum of the midbrain, at the top of the brain stem and prevents Orion's eyes from looking up. Up until a few weeks ago his eyes could go no farther up than dead level. This weekend he said he could, for the first time in six months, see objects in his periphery. A big deal! I asked him to roll his eyes upward and incredibly they moved! With the vanquishing of the tumor all his cranial tissue are rearranging themselves back to normal.

We are back in Boston now in our condo on Beacon Hill. Tomorrow he goes in for his fourth chemo session lasting through the weekend and then we (he) rests and recovers for another two weeks.

The Bill Dwight Show Broadcast

So we heard from many of you that that you enjoyed the live broadcast of Orion and Steve but some of you missed it or were too impatient to get through the first ten minutes of the show before we came on. STICK with it!

http://billdwightshow.com/

The show was called Half Empty + Half Full = Totally Awesome by Jaz Tupelo.

Hamp Hillbillies

We loaded up the Volvo and moved this antique sofa down to the Northampton condo. The sofa was purchased by Orion's great grandfather, Nathan Weltman. We made it in one piece, no one got hurt.

Orion live on The Bill Dwight Show

This Thursday at 8:15 A.M. Orion and I will be guests on The Bill Dwight Show. You can listen live over the internet or catch the podcasts When it goes up later in the day.

Valley Free Radio

Uneventful is Good

All of you blog readers are probably wondering, "Did Steve fall off the edge of the earth? Where is he?" Well, we traded places. He's at home, painting the condo, and I'm here with Orion, not posting. Sorry, but we're happy things are going well and there's not much to say.
I set up a little office in the bedroom so that I could be a telecommuter. I've certainly enjoyed the fast Internet and my new iPhone, AND getting to be with Orion all day, but I miss the face-to-face of office life.
Dinner with Susan Wednesday was a lovely diversion. There's just a comfortable feeling being in a home. And we can always count on a fabulous dessert from Susan. Yum.
In medical news, we had two office visits where blood and history were taken. It was nice for me to meet all the incredible medical staff whom I've been hearing about. Orion walks into the clinic and everyone says hi. He doesn't need to tell anyone his name. Now there's a mixed blessing! Orion's white blood count continues to stay high, and one of the cancer markers has plummeted to "normal". Such good news that we've been released for 11 days until the next chemo cycle. We're headed home this morning!
Our treat to ourselves yesterday was lunch at Toscono's for Boston's Restaurant Week. A lovely meal and great service on Charles St. I offered Orion wine with lunch, but he declined, saying it didn't seem like a good idea just before a blood test.

Orion heads to Michigan

Orion has accepted the offer of a fellowship at the University of Michigan to study theoretical particle physics. All of Ann Arbor awaits his Triumph. Note the haze of excited electrons around him in this old photograph.

Hello from Swarthmore

1) My name is Will, and I am from Swarthmore.

Yesterday, seven of us drove up from Swarthmore to visit Orion in Beantown. Sally referred to us as the Swarthmore Seven: Jen, Julia, Amber, Anne Charlotte, John, Kevin, and me! None of us have seen Orion since January, and suffice it to say that we have missed him.

After our arrival, Steve and Sally treated us all to Whole Foods, which was great fun to pick out of the buffet. Even more exciting was trying to figure out which box belonged to which hungry student when we returned to the apartment. The chaos of eight Swarthmore students filling up on tofu, samosas, and fried chicken is a sight to see.

Today we have given over the daylight hours to playing on the Wii (I trounced them all, no matter what you hear to the contrary) and Orion has been making truffles. We have also managed a walk around Boston to the state house (just up the street), the Common, and the Quincy Market, as well as a visit to Orion's floor on Ellison 18.

Our visit is almost over, but we'll all be sorry to go. It's nice to be together again towards the end of our time at Swarthmore, and our hosts have been most gracious. Boston is a beautiful city, but it's been even better to see Orion, Steve, and Sally.

2) Hello, everyone. This is Jen, Orion's favorite young lady. I haven't confirmed this with him, but it must be true nonetheless (or else someone needs a gentle beatdown). It's been lovely seeing him again, and hearing his snickers instead of seeing his "Heh" on our AIM chats (yes, we still use AIM, outdated as it is). I will miss him bunches. It looks like the next time that we will all get to see him is the final rite of passage: graduation. Scary thought. Many thanks to Steve and Sally for taking such good care of us :)

3) Hello, blog-readers! This is Amber, the one in the photo wearing the grey sweatshirt with a ridiculous rainbow on the front. As I was at home in California over winter break, I hadn't seen Orion since December. I'm so glad to have the chance to come up to Boston and see him. We've all missed his wit, near-encyclopedic knowledge of sci-fi and classic movies, and, of course, his baking. It's good to see him doing so well, and, as Will said, we will be sorry to leave tomorrow.

4) Hi, this is Anne Charlotte now! Everyone else has given a pretty exhaustive description of our weekend here, but I'm going to chime in anyway. I think we've all enjoyed tromping around Boston, visiting Orion's awesome apartment, and flailing at the Wii. But most of all, it's been great to see Orion again! All the other things have been fun, but the highlight of the visit was definitely hanging out with Orion, no matter what we were doing. Like Amber and Will have said, I think we'll all be sad to leave.

5) Kevin here. We hardly thought in December how long it would be before we had another chance to see Orion, and it's been great to spend some time with him today. We hope our odyssey to Boston has cheered him up and not just exhausted him.

6) Hi, this is John. I've been spending most of the day trying very hard not to cough on Orion, with a brief interlude of Wii victory (Will's comments notwithstanding). It's been great to spend some time with Orion. Thanks to him for putting up with all the chaos we brought along with us, and to Steve and Sally for their generous hospitality.

7) Hey, this is Julia! The above writers have recounted most of the events of this weekend, with the exception of my spectacular failure at the Wii (and my lack of tact). We've all had a great time seeing Orion after so many months and having the chance to enjoy his delicious baking. I hope he's enjoyed our visit as much as I know we have, and that we will get to see him again soon!

Swat comes to Beacon Hill

This weekend a group of Orion's friends came up from Swarthmore to visit. He is enjoying it very much. Left to right are Julia, Jen, Orion, Kevin, John, Anne Charlotte, Amber, and Will.

Half Way Through Chemotherapy!

I just gave Orion an injection of Neulasta and so marks the half way point of his chemotherapy. The last time I gave someone a shot was back in 1985 and it was a goat. Pretty much the same thing, neither the goat nor my son complained about Nurse Steve. When the doctors and nurses at MGH asked if I would be up to it I said, sure I have done goats. They looked at me like I was crazy so I asked what is the material difference between a goat and Orion? They were speechless and worried.

The Neulasta stimulates his bone marrow to produce white blood cells. This has worked well so far. I have mentioned it before but the price billed to the insurance company is $3500 for each injection. This morning the UPS overnight delivery guy just left it on the street after buzzing our door.

Dorothy: We melted her! Wizard of Oz: Oh, you liquidated her, eh? Very resourceful!

Okay here we go. Two MRI scans, one from January 18 and one from last night after 2 chemo cycles. Very dramatic results. On the left of these dyptichs is the scan from last night, on the right from January 18th before chemo began. Looking on the right images you can see a central white object. That is the 4 cm. tumor. Additionally, the tumor had spread or disseminated along the midline of the brain, spreading into the ventricles, those reservoirs of cerebrospinal fluid that act as reservoirs and pressure regulators. A bad prognosis!

On the left images you can see that the tumor is gone! Incredible stuff but the best part is that in some of these rare cases there resides a disgusting teratoma, a tumor that is not phased by chemotherapy or radiation. So horrible, Stephen King wrote a novel about one- The Dark Half. Read it if you dare. There does not seem to be one present! So no more surgery!!

So this cancer tumor, malignant, has apparently been destroyed by these awful chemicals. Seems mostly to have been comprised of primitive germ cells, which wandered off track in the first few days of Orion's fetal development. These germ cells are "exquisitely" sensitive to chemo and radiation. So far so good. What little is known of Orion's rare species of cancers is that the full six cycles of chemo MUST be given and the full radiation course must follow.

Cancer is grotesque in that is cellular, hard to see the little bastards. A single cell can escape, wounded from these first washes of carboplatin, etoposide and iphosmaside and return years later, it's vows renewed.

So on he presses using the kind of warfare that I approve of- scorched earth, salted fields, no prisoners. Orion's price? The danger of permanent physical damage to his hearing, his kidneys, his liver, his bladder and the dark possibility of future cancer caused by radiation, like the Curies. Is it love or toxic radiation?

All hail SCIENCE!

I am Made of Poison!

That is what his T shirt says. So true. Today he is in the clinic getting loaded with nasty chemicals. He will be here all day. I will leave him twice I think, once to get lunch for both of us and once to start dinner.

We will review the images from last night's epic MRis -Two hours! In an hour or so, but Dr. Ebb did pop in and say that there was Dramatic improvement. So Orion has that going for him.

Going for the MRI world Record

After a peaceful week, mostly back at home in Ashfield, we are now back in the saddle here in Boston. We are in Founders for two evening MRIs. Orion has just gone in wearing his hospital gown and sporting his shaved pate. As we waited I brought out the protocol, the treatment plan developed in the past year to treat his peculiarly rare brain cancers. The protocol is called ACNS0122 and lays out the schedule of chemotherapy cycles, the specific chemical poisons, the concentrations and the next steps before radiation.Tomorrow Orion starts cycle three and by this weekend he will be done with half his chemotherapy. The prudent and impatient doctors decided on this early look MRI. I expect we will be able to report good results tomorrow. I went over the protocol with Orion because I want him clear eyed about the various twists and turns in his "tree" of treatment choices. If the cancer is destroyed by the chemicals, as evidenced by vanishing protein markers AND clear images, he moves on to radiation.

If things don't look as good he will have to have another brain surgery.

If things really go south with no response to the chemo then he will have go with a stem cell harvest and then rescue before moving on to radiation.

His spirit remains high, he jokes, he continues his school work. The grad school acceptance remain unchanged so the University of Michigan remains his top destination.

I will post a photo of him in the next fews days as he does cycle three of Carboplatin and Etoposide in the Yawkey Clinic at MGH.

Mr. Mustard, with a Wrench, in the Condo

The wonderful folks at Swarthmore keep surprising us with their care for Orion. AS you know they are making it possible for him to graduate by being flexible. In this they gave him three tasks to complete. He had to finish a paper in a history class- DONE! He had to submit his physics thesis and give up honors- DONE! He has to complete an email tutorial on Counter-Factual History with Professor Burke. WORKING on it!

What else did Swarthmore do? Move all that work into the previous semester, put him on leave and did not CHARGE us for this semester. That's twenty-five grand folks! Yikes.

Okay what about all his stuff back at the dorm? They packed it all up and shipped it UPS. After UPS found a driver willing to drive down our icy driveway and deliver the six boxes, each 50-60 pounds, Sally hauled them up to Orion's room. How she did this is a mystery since she weighs about what she did when we fell in love (about two boxes). Now imagine me picking up half my weight. Not possible.

So Orion starts unpacking all of his college life and discovers that as a gourmand he owns a very large container of mustard powder. This has broken open during shipping and covered everything in the box with yellow mustard powder. He spent many hours today cleaning out this mustard powder.

Ah! The connections begin to come together. Chemotherapy was invented/discovered during WW1 when British soldiers, gassed by the Hun using mustard gas were recovering. Doctors noticed that those soldiers with cancer went into remission. Holy Smoke! They started giving cancer patients mustard gas derivatives and saw some great results. One hundred years later, a century, one of Orion's deadliest drugs is Ifosfamide, a mustard gas derivative.

The other thing Orion and I did is visit our new condo in Northampton. Sally and I had long planned to move to downtown Northampton in our dotage. A perfect walking location, close to all amenities. We found such a place and made a deal just two weeks before Orion was diagnosed with brain cancer. We followed through, knowing what horrors we might come to, because life does go on. If we manage to get it fixed up and settled it will make life easier on Sally with the shorter commute to work and Boston and the far fewer chores involved in battling Nature in the Hills. As for Steve in Boston, he has his rat studies.

Another Escape Attempt

Orion has just been cleared to leave town so we are going to attempt it. I gave my car up a few weeks ago so our only way back home is to get in a car with therapists on Craigslist or on Peter Pan bus from South Station. I tried to buy tickets online but you need to print them, not wave your iPad or iPhone at them. So I check for reviews of this trip, the bus, the trip. Out of hundreds of reviews ALL say stay away, worst experience they have ever had.

Clearly none of the reviewers has brain cancer or has a child with cancer. I thought of the many times that Rachel took Peter Pan back and forth from NYC when she was in college. She always seem to have some dramatic and outrageous story about her adventures. Sally and I laughed at her exaggerations. After reading the horror stories on the review sites it seems she had all those terrible adventures and if anything, down played them for our peace of mind.

Well after the last few months I think we can take Almost anything. So off we go to South Station, hoping to make Amherst by dark.

UPDATE! We made it back by 6. Uneventful until we walked through the door and the little terrier vomited her weight at my feet. Sally says, well its a good thing you are home!

A visit by Nate and Carrie

We arrived Friday, traveling via the Acela train, which could theoretically travel at 150mph, but only manages half of that at best, running on America's aging rails. Still, the train had fancy Star Trek-style doors, and a WiFi connection that let me instant-message with Orion as we chugged along.

When we reached Boston, the first thing I saw was a middle-aged man in a white shirt and tie standing outside the train station. He had a briefcase open in front of him, his sleeves rolled up, and an easel beside him that said

QA/IT
TECH SKILLS
SEEKING EMPLOYMENT

Yikes.

It was a beautiful spring afternoon, and we hiked from the station to Boston Common, where we met Steve, Orion, and Darcy. Darcy's hatred of other dogs means that she needs to be surrounded by 3-5 people at all times, blocking her vision like some strange squad of bodyguards.

At the apartment, Carrie and I played on the Wii with Sally, who worked doggedly to master the rhythm games in "Ravid Rabbids". Orion worked on a MATLAB-based particle simulation of the air around the doors of Massachusetts General Hospital, to determine definitively whether their revolving doors were more energy-efficient than their sliding doors. Steve made plans to photograph a dead rat he'd spotted.

It all feels pretty normal.

Markers on the Run

Today we heard that once again Orion's white blood cells and platelets are holding up just fine. Then we heard the most encouraging news since December 23rd. His blood markers, specifically HCG and AFP which are produced by the cancer were down dramatically. This points to but does not prove that the two types of aggressive primary cancers have been reduced in size. The good doctor did warn us that when Orion has his next MRI, Monday Feb. 28 in the evening, it may show a teratoma on the pineal gland that will require another brain surgery. He told us to brace ourselves.

In another piece of good news Orion is tolerating the chemo so well that his next round, number three, will be outpatient clinic administered and he gets to come home to my cooking and special Nurse Steve care.

We have little smiles on.

Wolverine DNA

Orion has been accepted into the PhD physics program at the University of Michigan, Ann Arbor.

Lost Without Each Other

Today we walked up to Beacon street and then turned west until we reached the Arthur Fiedler pedestrian bridge carrying us up and over Storrow drive to the banks of the Charles river. MIT lay beyond. The river is still locked in ice but on the far side, the Cambridge side, I could see a merganser like some avian Waldo in a group of hundreds of gulls. We followed the river's edge to the footbridge at Cambridge street and the Longfellow bridge abutments. We looked in the windows at Savenor's on Charles, but alas they did not open until eleven so we pressed on. I asked Orion to tell me when he recognized where we were. He couldn't! I asked him how to get back to the apartment and he said "follow you". I asked what would happen if I was "raptured" or "taken". He had no clue.

Tomorrow he has an oncology appointment with Dr. Ebb.

In the photo, from left to right is Blake, Ellison, Mass Eye & Ear, Liberty Hotel, more Eye & Ear.

Valentine Visitors on the Hill

A Valentine's Day heart shaped meatloaf that I made. The recipe came from the chef for former Mayor Ed Koch of NYC. Contained ice water, lots of onions and spiracha sauce. I also served tiny colored roasted potatoes and a green salad, followed by heart cake.



We had dinner guests! Jake, Anna, and their beautiful daughter Cadence came down from Maine on their way to their new lives in, of all places, Akron, Ohio!








Orion with little six month old Cadence.

In other BIG news, Orion was accepted to his first graduate program on his way to a PhD in physics. University of Illinois.

Ellison 18

I'm here with sleeping Orion on Ellison 18 at MGH. The pediatric model should be extended to all. Who would not be cheered by wall murals of ocean scenes filled with colorful fish and reefs? Adults, too, would appreciate the "welcome back" signs that adorn Orion's room.

Orion has finished his 5 day chemo cycle. He's waiting out the 24 hour after period and will be discharged late today. He's taken the chemo well, and the anti-nausea drugs have helped him keep his appetite. It is exhausting for him overall and you can see why he gets 2 weeks between cycles.

Yesterday's entertainment was Orion's video date. It was the night of Swarthmore's "Screw your Roomate" party where people are given a costume assignment and then they find their mate (think Romeo and Juliet, or the energizer bunny and the battery, or Dorothy and Toto). Jen decided that Orion should dress as ... a cancer patient, and she would be proton radiation. With the help of IM and a webcam, Orion attended the event.

Steve and I didn't think Orion needed a chaperone so we retreated to the apartment and watched Outsourced (the movie). Found its depiction surprisingly close to our Bangalore experience.

Up and Down Day

I finally caught the MGH helicopter coming in and landing, bringing in a patient and then leaving. I did not photograph the patient but I did wait to get this shot of the aircraft leaving. You can see the landing pad, fire suppression nozzles, landing lights. Off to the right is the windsock. As he takes off he slides away from the building. In the background near is the Boston Science Museum and in the distance straight back is Cambridge and Somerville.

Orion had a busy day yesterday. Sally's cousin Susan kept him company and protected him while I was back in Northampton for the day closing on a condo with Sally. Orion was also visited by my brother Dave, on his way up to Maine to see his new grandson. By the time I got back to the hospital at 5:30 pm, my old friend Nick had arrived. He and I had a perfunctory pizza dinner in the cafeteria and then after visiting with Orion some more and finishing out the day's chemo we headed over to the Harvard Gardens, a bar jammed with youth. I was easily the oldest person there. I pointed this out to Nick and that most of the bar patrons were beautiful young thirty year old women, and he says, "I didn't notice". Well good for his partner Betsy, but I always look.

Today Orion has been exhausted, sleeping more than awake. He is also not eating as much. The nurses claim he is doing better than most on chemo and that I should not worry. I do of course. I do.

Sally arrives tonight for the weekend.

Skullduggery

So this morning I needed to stay at the apartment to take delivery of the Neulasta, this cool chemical injection that supercharges Orion's bone marrow into producing white blood cells as if there is no tomorrow. Trouble is the insurance company does not want to pay for it. They think, "hey we have been rubbing two sticks together and praying for the last 3 billion years and that has worked fine". Our doctor's insist and the evil corporation relents but stipulates that the doctors can't get it, I have to. In perfect silliness the doctors tell me that once I can score the Neulasta, they will keep it "safe" for me in their refrigerator. Does this sound fishy to you? Wait.

This morning, remember this morning? I hear a tap at my window just as the sun chases away the last of the cold night. There is a guy below me on the street and he is throwing pebbles or brick chips at my window. I go down and step onto the street. He is gone. I turn back toward the door and I hear a shhhipp, just like a birder calling a dickey bird in. I look and just there in the shadow of our building, a step or two down an alley, is the guy. He is dressed in black, a scarf pulled up around his face. He beckons me over and beneath his coat pulls out the azure blue syringe of Neulasta. I give him $250 dollars in cash and he turns on his heel and walks quickly away. Back upstairs I get an email from the pharmacy showing that I have paid and that they will be billing the insurance company for another $3300.

Orion soldiers on.

Shall We Dance?

Macabre, but here is Orion waltzing with his IV tree. The fun just does not stop here.

Well Hellooooo Nurse!

Here is Orion with my personal favorite nurse Karen. I swear she put on makeup today for me.

I am also quite sure that the nurses, who love Orion, saved the window bed for him in 6b on Ellison 18. Wonderful views.

Tonight he starts cycle two chemo. He gets Etoposide, aka VP16, which he had last time as part of the cocktail. The new one is Ifosfamide, a nasty one that damages his bladder lining along with the cancer, so he gets a third cocktail ingredient called Mesna to counteract this. He is his usual stoic figure, serene in all his aspects.

I will head home to the apartment after the vp16 which causes blood pressure problems. Tomorrow I need to stick by the rooms to await the delivery of his million dollar Neulasta shots, delivered by courier in a cooler.

Crimes of Nature

So this time in the clinic they put Orion in what they call the New England room or even the New Hampshire room. NOT. Look carefully and you will see Sugar Maples and Brown bears. Cannot happen in this world! Also the puddle birds, mallards and canada goose are unlikely in a fast moving stream. And WHAT mountain is that? Matterhorn? Sigh. I am on a busman's holiday.

Back in the Ward

Since Orion is being treated by Pediatrics, the nurses cannot help their cheery attempts to welcome him back. Notice the gold dome of the State House in the background.

Bloomer wearing ghost!

Monday, a day of rest before another chemo cycle. I get up early to put the trash out on the street and am heartened by the rapid melting of the city street snows. Looking southwards however I see that overnight emergency snow and ice catching nets have been installed to slow the number of injured beginning to pile up on the brick walkways.

When Orion rises I announce the day's schedule of walks. We had a little plumbing incident and we need to find a hardware store. Off to Charles Street we go, the bright sun warming us. We pass by Savenor's, the famous butcher shop that began in Cambridge and was Julia Child's supplier. We look into the windows and promise ourselves that we will go in next week on a field trip to explore the wonders of a gourmet shop.

The streets are so much better! Gone are the slush pools at every pedestrian crossing. Fellow walkers seem cheerier and I tease out a few smiles with my grin and twinkling eyes. We find the hardware store and I am instantly enraptured by the narrow aisles and shelves that are laden and go all the way to the ceiling, ten feet up. They have not one plunger but three different ones to choose amongst. I am in heaven.

We resupply with tea, lemons and a few herbs to complete my planned dinner of winter squash soup. We head home for lunch and a little rest. This time we will head into the downtown shopping district in search of the mother ship Radioshack.

As we leave our apartment I am startled see a neighbor's trash bags. They are clear and I can see Everything. The entire sack is filled with frilled ladies bloomers. I turn to Orion and ask him the year. 2011, not 1880.

Our adventures in shopping done we strike uphill along the east side of the Common and are confronted by a large group of argumentative and intoxicated homeless men. Amazing that the streets and walkways are shared by tourists from all over the world and legislators, Hill staffers, drunks, and we two, father and son, spending the Spring in Boston.

Parting thoughts from sister-blogger Rachel

I'm back from my trip to Boston (although not much time was spent in Boston at all), and thinking about my wonderful family. I'm so proud of my brother Orion, who is calm, brave and quick-witted. He may have temporarily lost his hair, but he will always have his sense of humor, work ethic, kindness, and too many other good traits to list. Steve and Sally each have their own set of problems and woes, but they are able to instantly set these aside and comfort each other - Steve does chores for poor Sally, home alone all week with a full time job and way too much to do; Sally greets us weary travelers with a great meal and a lively conversation. Orion, Nate and I are lucky to have tough, supportive and only slightly crazy parents. We are all lucky to have all of you reading this and offering your love and support. Love, Rachel.

Wii get gifts when we get cancer

Orion plays the Wii that Rachel and Nate gave him while wearing one of three hats that Naomi knit for him, a T-shirt that I gave him, and all while drinking tea his Swarthmore Professor Crouch sent up.

The T-shirt says "Two more holes in my head and I would be a bowling ball" Actually he has two so he is almost there.

Rachel and Sally concentrate on their hot competition.

Escape from Boston the Movie

http://www.xtranormal.com/watch/11039362/

by Son-in-law Dave

Snow Let It Be Written, Snow Let It Be Done!

We did indeed arrive home safely last night after our harrowing escape from commuter traffic. Sally greeted us with a wonderful meal, the dogs were ecstatic, all was right as rain. Today was brilliant and flooded the house with light and warmth. The comforts of home were all Orion needed to finish his history paper and after a little editing suggested by Rachel, he sent it off. A Huge accomplishment and one of the three tasks that Swarthmore has set before him this spring.

He announced that his hair was falling out and he wanted another amateur barbering job from me, his personal attendant. He may as well have been Yul Brynner in The Ten Commandments or perhaps another favorite, The King and I.

While he finished his paper I clambered out on to the porch roof to shovel snow like every other poor home owning slob in New England. I always see these things as a poor man's stress test. No chest pain? No collapse? Okay, you are good for another 12 months. It is true that when I climbed back in through Orion's bedroom window I fell head and knee first onto the floor. No I don't swear as Rachel would have you believe, but rather a little polite "oh dear" flits from my lips as I lay crumpled on the floor.

And something silly- a person called from MGH's Proton Therapy Center to ask for an email address so they could send information on neurology baseline assessments. What arrived was a fat MS Word document with an appointment. Does anyone value their time? I do.

Escape from Boston: the revenge of Steve Pliskin

Hello, friends, this is Rachel, Steve's favorite daughter. As I write, Steve is engaged in a battle of wills with his mean and stupid GPS. She wants us to stay in Boston, forever, and we want to leave. Why? How? I came to Boston for a long weekend with Orion while Steve and Sally take care of some business in the Happy Valley. But when I arrived at Logan Airport, Steve told me that Orion's blood count was so good he was given permission to spend a weekend at home! So I met them at the condo and we called a cab to take us to the hotel, where Steve's car was parked, covered by at least ten feet of snow and most likely home to a family of feral cats. We waited an hour for the cab. If i had been a better student in college, I would remember the name of the philosopher who said that a man walking toward a door would never be able to walk through the door, because every time he would walk halfway there, and then halfway from halfway, until he was millimeters away but never arriving. This was our cab. Each time I called, it was halfway there, but it never arrived.

We decided to walk to MGH and wait another hour for the hotel shuttle, this time inside and with coffee and tea. Our colorful driver brought us to the hotel in one piece, where we found the car in much better shape than expected. Nothing is ever as bad as Steve thinks it is. We freed the car from the snow bank, but then the GPS failed, repeatedly, to inform us of the correct route out of Boston, the worst city in America.

When I was in first grade, I was given a simple assignment - draw a picture of what I did over the weekend. I drew a picture of Steve and I walking down by river. Steve stepped into a puddle and the ice water went up over his boot, and he said...something. I thought it would be more appropriate if I toned down what Steve said in my artistic interpretation of the incident, and instead wrote "oh god oh god oh god." This got me a note home and further censorship - I was asked to change it to "oh gosh oh gosh oh gosh." now that I am an adult, I can be honest with you. Steve said to the GPS, "why are you fucking us? Fuck fuck fuck fuck fuck. Why would anyone live here? No no no no no no no!" But eventually, we escaped Boston, and now sit in traffic in a town Steve identified as "who the fuck knows."

Orion sleeps peacefully in back. When we get to Ashfield I can finally give him the present that Nate and I got for him - a fun surprise we hope he'll enjoy. I look forward to spending the long weekend with Orion, the parents and the dogs.

An Explosive Awakening

The day of the big storm. We were awakened early by the backfiring of Suffolk University's snow brush clearing our sidewalks. It's report is indistinguishable from that of a .22 pistol. So the first time I heard it I thought WTF. Then I thought, well we are not Winning The Future with that small engine maintainence. This noise is right outside Orion's window so to most it would be torture. Not Orion. He shrugs it off with a grin.

Our street is like a little dream world because whichever Suffolk staff member is in charge of keeping the street clear is dedicated and obsessive. My kind of lunatic. May spring come soon.

A secondary explosion took place when I prematurely released the espresso cup while there was still one last spit of steam left. The coffee dust expanded like the first big bang and deep brown specks were deposited all over me, the counter, the butter in it's dish. This caused us both to laugh. There is also the serendipitous discovery of "coffee butter", a unique toast topper for the caffeine addicted.

The Monk's Quarters

Orion's room. He makes the bed as well here as he does at home.

Unflagging devotion to scholarship

Yes, here he is again, still massaging that history paper.

You know that big Christmas Goose in the butcher's shop window?

I can imagine Orion looking out and seeing Tiny Tim, or perhaps Bill Sykes, but this isn't London.

When will I miss Ashfield? Now.

The view from Steve's bedroom. Martha Coakley can look right in!

True Patriots don't play Football, They Fly Space Shuttles.

Orion in the exam room wearing his STS-125 t-shirt.

We Are All Brahmins Now.

We started the day by packing up at the hotel, never to return. After a short shuttle ride we went to a new building, Emerson, at the hospital. This is the home of the endocrinologists and we came to see one of my favorites, the beautiful Dr. Fasselli. She has been worried about Orion's pituitary gland and it's feedback with the adrenals. He has been on a little dosage of prednisone since his surgery and she wanted to see if he could produce his own cortisol so she injected him with the hormone and shooed us out so that Orion could get his blood drawn in precisely 45 minutes. Off we went to pediatric oncology, where the wonderfully motherly Nurse Patricia put Orion in the Patriot room. Football, not real patriots like the Adams.

She prepped his port and on time made the blood draw. Results of the cortisol stim test tomorrow. His blood counts, white blood and platelets, the concern of Dr. Ebb, where just right and so out we went into the sunshine to take up our new digs on Beacon Hill until May 31st. A short ten minute walk and we were in. The two flights of stairs promise to be good for me unless they kill me first. As soon as we unpacked I started the first of two oversized loads of laundry in the basement. I long ago foretold my own demise would come carrying a laundry basket in front of me and going down steep stairs. I once knocked little Rachel down doing just this. The apartment stairs are steep and winding. A bad situation for me.

The apartment gives us the room we have been craving, two bedrooms, a galley kitchen, living room, and bath on the third floor looking out onto the old streets where socialist plots were whispered but never consummated. Too much to lose.

The highlight of the afternoon was having a delivery from Peapod the grocery delivery arm of Stop and Shop, a formerly New England grocery and now operated by those damnable grocers the Europeans.

Tonight I attempt the first home cooked meal, salmon, sweet potatoes and salad before the great snow of '11 rolls in and strands us.

Sally says goodbye for another week

Here they are standing in the parking lot of our hotel for one last night, La Quinta. You can tell it is high quality because of the proximity of 99 and I-93. You can tell 99 is of the highest quality because they fly tattered U.S.A, Commonwealth of Massachusetts, and Marine Corp flags.
It is true that Orion and I have eaten here. The shame of it all.

Why We're in Boston

Many of you have asked why we're in Boston when Orion is healthy and between treatments. This requirement was a surprise to us too. One of the consequences of chemo is that the white blood cell count goes to zero. There is major risk of infection. The doctors feel strongly that we should not be more than an hour from MGH. Cooley Dickinson couldn't provide the needed transfusion and care, and Baystate would be barely acceptable (they say). And we didn't tell them that even Baystate is 50 minutes away from Ashfield. Steve has a list of symptoms to watch for and Dr. Ebb has given him a phone number to call so that Orion would be immediately admitted to MGH without going through the dreaded emergency room! That convinces me that it's serious.

So Steve and Orion have one more night on the MGH floor of La Quinta Inn, than they'll move into the condo he's mentioned 1/2 mile from the hospital. I've been coming in on the weekends, and once they're in the condo, I'll be able to work one day a week there rather than taking vacation days. I wish I could find a way to bring the dogs since they would be OK in the condo, but Ida's ACL injury prevents her from climbing stairs. A friend lent me a hip-helper harness that I'm going to try.

Meanwhile, continued thank yous to people helping me leave the house on the weekend. Heidi's been house and dog sitting every weekend. I bet that's hard on her social life. And thanks to Maura who took multiple trips to the Arbors yesterday to check out the injuries from my father's latest fall (which of course happened on the weekend.)

No complaints except from the little dogs

The sunshine and warmth was lovely, cheering Bostonians immeasurably. Sally and Orion got to experience the narrow, steep staircase as it wound to the third floor. When we entered the two little dogs were displeased, probably sensing their imminent journey to Ohio, where the owner's parents will take care of them. Orion examined the kitchen and was satisfied. He was a little concerned when he saw his bedroom and realized that Henry Adams had died here.

Warmer weather means danger

The owner of the apartment that we are renting offered to let us bring over a couple suitcases before our move in on Monday. A generous gesture. We took the Quinta van in and dragged the suitcase through the snow and ice. On every side street yellow police tape had been strung warning people of ice falling and impaling the unwary. Our street, Temple, was no different.

We Go Native

Sally came for the weekend. She arrives just when Orion's eyes are tired of rolling from my inanities. We head out to Rodizio Brazilian Steakhouse on Broadway. Naturally there is no parking. On the street, a mountain of filthy snow walls off the sidewalks from the street. We drive around in circles when I spot an open street space. Sally pulls into the deep slush. I step out into the muck as it slushes over my shoe top. Remembering that the good people of Somerville have visitors feed meters until 8 pm (a $30 lesson), Sally scales the steep snow bank to feed 8 quarters into the meter set into the icy peak. We walk to the restaurant and find a vast room, filled with tables and empty of customers.

A very charming fifteen year old tells us that we serve ourselves at the buffet. Prix Fixe. We wander over and stare at the largely mysterious looking pans. She appears again and gives a tour of mixed Portugese and English translations. We express interest in the acres of roasting meats and a young gaucho appears with a massive knife and tells us we are looking at coracao de frango, piranha, peito de fringe com bacon, carneiro, alcatra. Okay who knows portugese? Fortunately, at the table, they had a translation. Offered were balck beans, gizzard with patato, cow stuck, passion fruit mouse, and corn gruel.

All fabulous!

Tomorrow we drop some things off at the new apartment and pick up keys for a Monday move in.

He is a good man, that Orion Sauter!

I was speaking with Sally who wanted the daily Orion report and what came to my addled mind was the musical "you're a good man, Charlie Brown". The relevant lyrics:

You're a good man, Charlie Brown
You're the kind of reminder we need
You have humility, nobility and a sense of honor that is very
Rare indeed.

That is it really. Orion sets an example of how we should all live.

Orion at work on a snow day

Here is Orion working on his history paper about changing views on cigarettes over time as presented in newspapers. The rest of the world here is shut down from another snowfall. We looked out our window facing the parking lot and Rte. 28 and it looked like an inch or so. Going out the front however I found my car buried in a drift which I had to clear with a brush. My feet are soaked but I am happy to be sitting at Orion's back while he taps away, back on track for his Swarthmore Commencement after a month of surgical and chemical induced brain fog.

Amanuensis

Yes, that is I. Orion's amanuensis, scribe, Boswell. He is feeling great. We are sitting in the overflow dining area at MGH waiting for our shuttle ride back to La Quinta, the hotel in Somerville that we have encamped in.

We came in this morning for his first blood draw since chemo cycle one. Once again they put us in the " beach" room, rather than my Little Pony, Barbie, or Transformers. His results come back quickly and his doctor, David Ebb, is impressed at the vigor and youth of his bone marrow. The counts are little changed after one cycle of poisons. Ebb says, "well we are just started, we will make short work of those white cells and platelets". All of Orion's vitals are perfect, right on the line, in NASA speak.

We then struck out onto Cambridge Street and headed up to our future home on Temple so Orion could see it. Lovely. We walked uphill and around the State House, down to the Common, where we saw all manner of strange creatures (thanks Norma Farber for "As I Was Crossing Boston Common ", and coincidently was married to the Farber of Dana-Farber). Lunch at a Mideastern place with spiced lamb and chai, warming! Then we, as woodsmen, bushwhacked across the Common and veered down snowclogged streets of brick and darkness before we veered again and reached Charles Street and it's little shops of consumption. No, not that consumption, the other one.

We will now hunker down in the hotel for the snow storm and hope for a visit from Sally this weekend, unless she harbors any disease. Monday he gets a little cortisol stimulation test and then another blood draw. If all goes well, a second draw on Thursday and then the likely admission to the hospital on the following Monday for cycle two of chemo. Five days.

A Mitzvah

We headed out after lunch for a walk, veering right as we have been doing to walk counter clockwise around the Dreck Mall when I suddenly stopped and said, no let's go clockwise this time. Not a hundred feet later was a damsel in distress! Golden tresses had she and her car, a black late model, perhaps the last model of a lincoln Town Car, were behind the Christmas Tree Shops. She explained that she had locked herself out, purse, cell phone and two miniature poodles, Duffy and Tiger, locked inside. It was twenty degrees and a stiff wind blew. Of course we stopped. The owner of the car was visiting his sister at MGH. Using my cell she called for the key code to get back in. He did not answer. We suggested calling MGH but she could not remember the patients name, room, floor or building. We moved on to calling AAA auto club. Orion was getting chilled so I sent him and Sally off while I stayed with Goldilocks. Eventually AAA agreed to send a truck even though her membership had expired. As soon as that was settled and we settled in to wait fifteen minutes with now frantic dogs beginning to understand their plight, her friend called with the code. 9479321684. No. 9473921684. Yes. The doors opened, the dogs lunged, she pushed the doors shut and I jammed cold stiff fingers into the door to stop them from locking. Now safe, she asked me about us and I told her about Orion. She slumped against the car holding her chest. She said "in fifteen years you will remember this because the angels made you turn and help. Now, I and all my friends will pray for Orion and he will be saved".

I thanked her and packed her and the dogs off. As they drove away, the trunk popped open and I quickly dashed into the mall to find Orion and Sally.

Cooling Our Heels

We know we have many anxious readers so let me say that Orion is fine.

Last night was dinner out with two old friends Marsha and Elana at a Tibetan place. We basked in the glow and support they offered. The same was true when I stayed two nights with Irv and Laura in Brookline. Besides the comfort and counsel they dulled my overwrought senses with strong martinis.

So if you find yourselves in Boston in the next six months, do come and visit.

Orion has been up and down with his physical wellbeing, his chief complaints are the flu like symptoms of aches, pains and an uneasiness that comes from the Neulasta and the chemo. Unseeable is the drop in his blood counts that we know is happening.

It will be sad for Sally to leave later today.

An Early Valentine's to Orion from Jen

Jen, who does everything early, sent Orion this Valentine using a photo of Orion and his harem at Swarthmore. The robe is his usual attire, then and now.

BBQ and Snow Banks

We headed out for dinner to Redbone's BBQ. Ha! Like being in college again. Sally and I were the oldest people in the room. Orion's new buzz cut hairstyle was all the rage however. Quite unattractive. Parking was insane with streets narrowed by fifty percent and cars parked In the middle of lanes. Lots of poor judgement driving due to a combination of youth and beer around Tufts. It was fun seeing Orion eating as if he had no intimacy with his first of six chemo cycles.

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.