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.