Home for the Holidays!

Orion is home for a week! We all spent eight months with him in his fight against brain cancer and then he was off on his own, alone for four months. He found an apartment, fed and cared for himself, had a clean MRI and HcG, AFP blood tests AND completed successfully three classes in his graduate program at the University of Michigan. He has also been offered a summer research position with Gordy Kane, a leading world expert on string theory.

GOODBYE to 2011, bookended by the cancer 12 months ago and his academic victories today.

Giving thanks to science and all the cancer patients who have gone before

Sally and I are in Ann Arbor, Michigan, USA to visit with Orion who is in his first semester as a physics graduate student. We wanted to be with him when his first MRI was read following four months since his last treatment.

All is well! His brain and spine show NO evidence of disease. The scans were incredibly sharp and detailed. Orion's Michigan Medical Center doctor is Dr. Hamstra, an easy going optimistic and thorough clinician. Just what we were used to at MGH.

Everything is Still Fine

So I made the mistake of saying I would post again in mid-October. I did not. Time seems to have slipped it's bounds and we are in November. Orion is still fine, fatigued and a little dispirited but he is hanging in midway through his first semester at the University of Michigan studying physics for a PhD.

He has taken his midterms and his professors assure him he is doing fine even though he feels, for the first time in his life, challenged. He enjoys his new friends, the campus, the shopping at the farmer's market and his apartment. He has even signed his lease for the 2012-13 year.

It has been a pleasure to be able to video chat with him and see that he is fine and that his hair grows back slowly but surely. Sally and I will be heading out to see him for Thanksgiving and we will be able to report from Ann Arbor.

He is a tough man.

A New Life

Walking on Liberty Street (!) with Sally

  It has been a long and horrifying eight months but this past Sunday evening we left Orion in Ann Arbor to begin his new life and for us to resume ours. It was amazing to open the door to his new apartment that he selected online while in the midst of chemotherapy in Boston. We had driven across five states with most of his belongings and immediately set to work finding tag sales to round out his furniture and kitchen supplies. By Sunday evening we had eaten at five or six Ann Arbor restaurants, spent time at the Farmer's Market, the People's Co-Op, and CVS and of course had walked by his new home at Randall Lab, home of the UMich physics department.

After a failed experiment with getting the university's wi-fi using an external antenna and amplifier Orion closed  a deal with Comcast for his internet access. It was interesting to watch him dealing with them in person and on the phone for what would be three days of frustrations. Sally and I stayed out of it, letting him solve this first of his new life's problems. He did.

Saying goodbye to the Boston terrier

Sally and I left him alone to unpack his suitcases and his mind. We took many walks through Sally's old college life. She graduated from Michigan in 1973 and had nothing but the best of memories to savor. Sunday evening came too quickly and we said our goodbyes after being inseparable for eight months.










 By the next morning we had left our son, holding our breaths for some word from him that he was coping. By evening he had his internet and we were treated with a steady stream of news about his meetings, his new office, and saw his apartment take shape on Facebook.

Orion's new office at Randall Lab

As of today, Thursday September 1, all is well. He starts classes in a week and has selected quantum theory, statistical mechanics and electromagnetism to sharpens his wits on.



 I do not expect to post again until his three month MRI in mid-late October.

The Home Stretch

Orion and I were back in Boston yesterday. He was there for the removal of his port, that little bit of technology wedded to his arteries by his heart that allowed for the rapid removal of blood for testing and the rapid input of those terrible chemotherapy drugs that the MGH pediatric oncology poured into his body all spring.

First we wanted to have a final appointment with Dr. Shannon Macdonald to discuss our next steps. Orion had already had a lengthy phone conversation with Dr. David Ebb about Orion's final MRI. Both doctors told Orion that they were very pleased with the images of his brain and spine and that there was still no evidence of cancer left in his body- no visible masses and no chemical markers of AFP or HcG. Hence the port removal- no more cancer treatments necessary.

Next week Orion heads off to Ann Arbor to start his PhD program in theoretical physics. We asked what we should do if Orion had any problems or concerns, go to the UMichigan hospital? NO. Call MGH anytime 24/7, each doctor giving Orion their personal cell number. They want another MRI in three months along with blood work. Repeat that every three months for the first year, then every six months for the next year and once a year for the rest of his life.

Then came a treat. They gave Orion one of the many brass apertures that had been machined to shape the proton beam as it crashed into the tumor. Also with it a beautiful Lexan mask that shapes the beam for the three dimensional shape of the tumor bed. On them you can see Orion's name and the date of treatment, Day 28 on July 18th. These two pieces of personalized radiotherapy have been sitting out losing their small radioactivity until this week.

 The piece of brass weighs 3883 grams or about eight pounds and fits in the palm of one's hand. A paperweight memento of an extraordinary eight months.

In His Own Words

Wednesday July 20th, 2011 was the last day of my proton radiation therapy.  This marks the end of my cancer treatment, though I still have a few check-ups and a lifetime of periodic MRIs ahead of me.  I couldn't have made it this far without the incredible support of all my friends and family, but there are a few people that I think deserve special recognition and thanks:

• My optometrist, Brian Wadman, who first noticed my swollen optic nerve and sent me for the MRI that revealed my tumor.
• My neurosurgeon, Ziv Williams, who evidently heeded my warning that my brain is about all I have going for me.
• My oncologist, David Ebb, who planned my treatment and kept a watchful eye over me throughout the ordeal.
• My nurse, Patti Scott, who would smile and laugh with me as she drew tube after tube of blood samples from my chest-port.
• My radiation oncologist, Shannon MacDonald, who was a match for my geekiness as she explained the inner workings of the MGH cyclotron.
• My mother Sally, who kept at work during this difficult time, providing the top-notch health insurance that allowed me to be treated.
• Most of all, my father Steve, who has been my roommate, nurse, chef, personal trainer, secretary, biographer, chauffeur, and friend during the worst 7 months of my life so far.

Orion

Orion finishes therapy

http://www.youtube.com/watch?v=3rUeLAF5HIw

Seven months of Chemotherapy and proton radiation brought us to this moment when Orion rings the end of therapy bell at the Burr Proton Therapy Center in the Yawkey Clinic of Massachusetts General Hospital.

All is well in the world again.

What You Can't See

Today marked 90% done with radiation, closing out our last full week of commuting to Boston's MGH and the Burr Proton Therapy Center. After radiation he was given his second audiogram. The results showed no hearing loss yet from the cancer treatments. Both proton radiation and chem can destroy the tiny hairs in our ear canals that sense the changes in air pressure that we call sound. This whole cancer thing is horrifying to a parent.

One of Orion's main chemo drugs was Carboplatin. He was administered this drug throughout the spring in three cycles.The last dose was about seventy days ago. Research tells us that 38 percent of carboplatin receiving patients suffer hearing loss beginning 135 days after end of treatment. A more recent article suggested 10-29%. At MGH they try very hard to prevent the things that get damaged so Orion was given sodium thiosulfate after carboplatin. This should prevent hearing loss. Two and a half months from now Orion will be in physics classes at grad school and the tale will be told.

The Man in the Polymer Mask

Here he lies, Orion, the man in the polymer mask. The mask allows for the exact and rigid positioning of his head for accurate and consistent proton radiation to the tumor bed. He cannot see what I saw. The nozzle to the right is fitted with three layers of material designed to shape the proton beam. There is a mask of machined brass that is shaped to fit the tumor boundary. There is a lead shield to shape the beam from a fusiform to a blunt leading edge, and finally you can see a Lexan mask that is contoured in thickness to shape the beam for impact on a 3D irregular surface.

As soon as he was done we watched the final Space Shuttle Atlantis lift off for its final flight. We both would rather be on it than here.

Bell of Freedom

Today at the Burr Proton Therapy Center we witnessed a touching scene, repeated twice. There is a ship's bell on the wall and when someone completes therapy they ring the bell. Just a few days ago I said to Orion that I did not think anyone ever did this, ring the bell OR finish. He scoffed at me as only he can. Today two patients rang the bell while we waited for Orion's turn under the ray gun.

Spontaneously every person in the room, perhaps twenty patients and family members, broke into spirited applause. Me too.

So twelve weekdays, twelve treatments from now, Orion will ring that bell. There will be video.

Brain Drain

Here is his poor pate! Up until the last few days he has been shiny bald but suddenly, just after his dark eyebrows and mustache came back a crop of snow white down, like a young eaglet has appeared. His radiation oncologist Dr. Shannon MacDonald thinks it will succumb to the radiation before coming back. Orion is now done with spinal fields and is now being blasted in the region that the late tumor once resided. This only takes a few minutes and so today we spent only our morning commuting to Boston, back in time for lunch.

Sacre Maroon!

Half-way through proton radiation therapy today and all Orion has to show for it is this Pepe' Le Pew radiation burn stripe down his back. He says it does not hurt. The blasts of protons shot into his head above the ears are at half strength so no redness there. Today was the last spine treatment. 15 days to go, another 3,000 miles of foul language from me, another $420 of gas, $60 in parking, $20 in tolls.

In the Trenches

I wrote about the waiting room at the Langone Medical Center in NYC last January. I am a little uncomfortable about the whole cancer as war analogy, but what fits this struggle better? Cancer is dreaded for good reason. Our own bodies changed, metamorphosed into an enemy within, one that knows our weaknesses and our strengths.

At the Burr Proton Therapy Treatment Center in the basement of the Yawkey building at MGH all the patients are using the giant cyclotron but their cancers are all different. As I sit each day waiting for Orion to finish his time under the gun I observe the other patients and the staff. As a naturalist, observation is all.

My current favorite is a frail little girl, perhaps ten or twelve years old. Her skin is pale and thin, almost translucent. Her blond hair has been reduced by her treatments to a few hundred thin limp hairs, evenly falling down around her visible skull. Her eyes are a clear and piercing blue and looks right back at me when she catches me watching her. A small smile plays at her mouth. She is every bit as beautiful as her mother who is serene and rock steady as she helps her daughter rise from the wheelchair and walk to the cyclotron gantry treatment room. There is no hint as to the character of her cancerous enemy. Today is her last day and I will miss her. While she was in treatment her mother was asked by Paul, the waiting room receptionist, if she would like to be on the hospital mailing list for newsletters. Her reply was swift, no thank you. I knew she felt as I did, I want nothing to do with this place, these people, this year. I want to sweep it into the dusty corners of my heart and mind.

There is a Muslim family, the father perhaps my age, confined to a wheelchair and attended to by his wife and son. He looks defeated in his slumped shoulders and vacant eyes. His head has a terrible wound from his surgery at the very top of his skull. The dessert plate sized scar shows me that his skull was opened up and the large section removed has been artfully put back giving him a strange tonsorial bald patch, like a monk. His wife exudes an air of confidence and control, making intelligent little facial expressions when the father is asked questions by the medical staff. It is clear she would reply differently.

There are a whole series of handsome young men with no visible signs of damage. Their hair is intact, they move with the ease of thirty-year old athletes. They are all somber, business-like, punctual in their comings and goings. They have no one with them to help face the awful machine.

Late in the afternoon come the prostate crowd. These guys are my age to twenty years older. They are jolly, chat with each other, shake hands, trade jokes. It seems a club of well to do educated buddies meeting for a card game or a drink after work. Their treatments are few and short to treat early stage prostate cancer.

There are two patients with cancer of the eye. One, a young man of Orion's age, his right eye grievously wounded. He comes alone and sits quietly awaiting his turn. After a week and a half he has begun acknowledging me with a tip of his head. The other eye cancer patient is a woman my age, most often accompanied by a friend. The patient is very serious and strong in spirit and body. She carries the cancer and her treatments like a heavy burden that she is duty bound to carry without complaint. Her husband showed yesterday and seemed resentful of his small part in this ordeal.

A man is wheeled in with an oozing wound on his neck. He looks exhausted. An old woman comes by, her head with a few bruised and wet looking wounds. She is told that they may bleed but not to worry. I do not believe she understands where she is or what is happening. She seems to have a few children who don't want to be here (who does, really).

Then there are a few women who look about 35-45. They are friendly and seem perfectly healthy except for the fact that they are having daily radiation at the business end of the 250 million dollar cyclotron.

Another patient comes in by wheelchair. He is unhappy. He wears a sporty fedora to cover his bald head. He speaks through a hole in his trachea, his hand and feet tremble. Orion's age. The difference is incredible between the two. Orion sits next to me composing a new entry in his physics blog. Serene and fit, he is the only one who shows up with a hairless pate that he has embraced as fashionable. Only people standing over him can see the terrible scar from his neuro-surgery. Only those who look closely can see the prisms affixed to the inside of glasses, designed to trick his brain into correcting the offset double vision the tumor has caused.

There are many patients coming and going but another catches my eye. Another young girl, curled in fetal position on a stretcher, her head girded by a diabolical metal structure, brought down from Ellison 18, the children's ward. When spoken to she whispers back in a tiny voice. She too is alone.

Off to the side is a children's activity room, mostly managed by a music therapist, Lorie. She is funny, attractive and has boundless energy with a sure cheer for all the kids. I love watching her work, I love hearing her music spill out into this waiting room of the wounded and damaged.

Presiding over all of this is Paul, the receptionist. He is the perfect host. He knows everyone by name, he is discreet about the reasons we are all gathered here. He is efficient. I see him scanning the room like a conductor. Is everyone here? Are they all ready to go, do they need something to drink, to snack on? Do they know about the parking discount? He is about 50, neatly dressed. His desk and walls are covered with photos of his dogs and others that patients have sent in. Tucked under a shelf is the urn apparently containing the remains of one of these beloved canines. Sort of charming, sort of not.

Proton therapy

This is how Orion is spending his summer between Swarthmore and the University of Michigan. The plank he is on moves forward while the proton beam is diverted from the cyclotron and follows his spine.

He is on his chest, face in a rigid mask that was made for him. His back is marked up each day for alignment with different color markers. Sort of like a tattoo convention attended by idiots. That spout on the left is the proton nozzle and is rotated up over him when the beam is ready. Then his plank moves forward toward the center of the donut enclosure.

Questions and Answers

Since I'm not with the guys experiencing radiation therapy first hand, I, like all of you, am filled with questions. Some I've been able to ask. I send others with Orion to ask. And The Google answers others - the National Cancer institute has a good page and I've taken a bunch of info from it - http://www.cancer.gov/cancertopics/factsheet/Therapy/radiation

Why radiation?
Way back in January when Orion got his diagnosis and the treatment protocol, I asked Dr. Hochberg - Ten or twenty years from now, will you say chemo was necessary but we didn't need radiation? He said an emphatic no. Reading I've done since shows a greater incidence of recurrence of the cancer when chemo is the only treatment.

What's being radiated if the cancer is gone?
Well, we no longer can see the cancer with an MRI, but an MRI doesn't show cellular data. Even one cell left behind can grow quickly to the size of the original cancer. So the radiation is directed to the exact shape of the original tumor, expanded somewhat beyond because since we can't see the individual cells, we don't know where the edges are exactly. And since the markers were in the spinal fluid, we need to make sure there's no cancer left in the spine either.

The spine is so long that it's done in 5 sections. How do the technicians make sure there's no overlap (doubling the radioactive dose) or gaps (no dose)?
The technicians make marks all over Orion so they can line up the rays. He says they move the dividing lines a little each day, so if there's overlap or gap, this shift will make up for it.

Why 30 little zaps instead of one big one?
There are two main reasons for once-daily treatment:
- To minimize the damage to normal tissue.
- To increase the likelihood that cancer cells are exposed to radiation at the points in the cell cycle when they are most vulnerable to DNA damage
Studies are now being done to see if even more fractionalization is better - twice or more a day. Some future patient will benefit from what's learned.

Does radiation kill just cancer cells?
No (sadly). The amount of radiation that normal tissue can safely receive is known for all parts of the body. Doctors use this information to help them decide where to aim radiation during treatment and how much to give. Orion is getting 1.8Gy per day per spinal section and half that per day for each of the 2 brain treatments.

Should we worry about cognitive damage?
Well I worry about this. But studies I've read show that with pediatric brain cancers, older is better. I guess when your brain is pretty well formed so it can handle being beaten up. One chart I looked at showed that by age 12, cognitive damage was minimal.

If you are wondering about any other aspects of radiation treatment, tell me and I'll see what I can find out.

mixed blessings

mixed blessings

Cyclotron control room

Flawed Technology

So here we sit in the waiting room at the Burr Proton Therapy Center. As usual we left Northampton at ten for the 100 mile commute in. The ride this morning was as smooth as possible until we hit Storrow Dr. Then Orion got a call from the cyclotron techs that the machine had broken down and they hoped that he had not left for Boston yet. He laughed and told them that he was already in town.

We walked down to Whole Wallet, our favorite criminally priced food store and found some lunch. No tables though-each of the seven tables were occupied by one individual, not eating but using cell phones. We headed back to the River Cafe at Yawkey and had a lovely meal before coming into the Proton Center to be told to wait. No information.

The way this works is that there are several gantries or ports that protons can be shunted out of the cyclotron's tunnel of accelerated particles. This allows MGH to treat more patients at the same time, important since this is insanely expensive. Apparently one gantry is out of order and patients are piling up. So to speak. Given that we are seeing fewer people here and there is some traffic it looks good although I dread the Friday traffic.

Update as I write this! The technician came out told us the problem is in a few wires that are being replaced and we are looking at about an hour and a half delay. BUT she also told us that we get to go into the control room and chat with the physicist in charge to "kill" time!

More anon.

A Rad Afternoon

So we spent our first afternoon at the Burr Proton Therapy Center at MGH for Orion's first of thirty exposures to protons and X-Rays.

We drove in, a hundred miles, without a hitch and then were sent off for blood work, then Orion signed up to be one of forty-five participants in a study of short term and long term effects of proton radiation for the rest of his life.

Our wonderful pediatric oncologist Dr. David Ebb found us down in the waiting room and took us off for a private exam of Orion's formerly feverish feet and to bring Orion up to speed on the prospects of the Boston Bruins. Orion said, uh? Say what?

Ebb was scandalized that radiation used the pediatric group for the blood work and said "no way back up to oncology for the duration". Then Orion was hauled off for his first session. This was much longer as the first time since they had to adjust him and the 250 ton cyclotron and its ports to deliver the proton beam into his spine.

He emerged an hour later all smiles, no nausea, no burning, no marks other than these pictured. We do this for another twenty-nine times so he and I are settling in.

Feverish Feet!

Just when we were finished with Orion graduating from Swarthmore College and we thought he had a little breather from medical procedures he woke up to both feet swelling and covered in a bright rash. His feet were hot to the touch and tender. It looked like contact dermatitis to me but from what, where? I had him elevate his feet and take a benedryl cap. After an hour they started looking a little better but he called his oncologist Dr. Ebb who wanted him to get an ultra-sound to rule out a blood clot in his legs.

This on a day when my car was in the shop getting prepped for our seven weeks of commuting to Boston for radiation therapy. So Sally left work and off we went to Cooley-Dickinson, our community hospital. Nice enough folk but I admit to regretting leaving Boston and MGH. After nearly five hours they had ruled out a blood clot and all his blood values were normal. So they shrugged and sent us home.

This morning his feet look much better, hot touch gone, almost normal. He set up his first appointment for proton radiation for next Wednesday when we will also check in with Dr. Ebb.

I wish I did not have to write this blog!

Our Family at Swarthmore College Graduation for Orion

All My Apologies!

I have been remiss in not giving you all an update. After Orion's labs came back with normal blood counts including white and platelets AND AFP and HcG, we were released from staying in Boston to be near MGH. We gave up our home on Beacon Hill for the last four months of chemotherapy and high-tailed it home to western Mass. A few days of rest and he had another blood sample drawn which also showed that he was now ready for Swarthmore Commencement.

We drove down to the campus where we were met by Orion's beautiful girlfriend Jen, also a physics major, and also going on to a PhD program. She announced that SHE was now going to care for Orion and that Sally and I could take a vacation.

We are doing just that and having a wonderful time. We will get involved with graduation activities starting Friday night. We have seen him for a few moments in the last few days and he looks very happy and healthy, true to Jen's care.

Latest Labs Lets Us Leave!

Orion and just came in from the pediatric oncology clinic at MGH and his white blood cells have soared again to safe levels. Dr. Ebb released us for good on the condition that we get a blood draw back home on Thursday just to be safe before senior week begins at Swarthmore College. So we shall give up our Beacon Hill apartment Tuesday night and head back to the hills of western Massachusetts for a few days before heading down to Swarthmore College for a week of celebrations culminating with Commencement on Sunday the 29th. Dr. Ebb insisted that we return with photographs.

Orion then gets a week of relaxation before he starts Proton Therapy at the Burr Center at Massachusetts General Hospital. Six weeks of protons being smashed into his brain at sixty percent the speed of light. Ouch.

Mere Mortal Me

Orion and I just got in from seeing THOR. I thought it was pretty amusing to be watching it while sitting by Orion. I grow weaker and smaller by the day but he just gets stronger. I am hoping for a great clinic visit on Monday, one that may result in our freedom.

And TGIF, Sally visits tonight.

End of Chemotherapy!

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Orion finished his sixth and final course of chemotherapy last night and his wonderful blood work allowed him to be released from Ellison 18 today. This evening I will inject his final dose of Neulasta and we will hide out at the Beacon Hill apartment until he hits bottom and makes the return. Three weeks to Swarthmore Commencement and four weeks to his date with accelerated protons.

I am Waiting, He was Waited on.

Today was radiation prep and planning day. After a session with two Fellows who went over the possible adverse outcomes of proton therapy, Orion signed the consent forms and off we went to the mask fabricator. He has a mask molded to his head made of a mesh polymer that is activated by submersing it in a bath of 170 degree water, a mikvah if you will.

Then something extraordinary took place. He was brought into a CT scan room by two beautiful young women who stripped him down and lay him on the moving platform of the CT scanner, which glowed with green and red alignment lasers. The room was darkened and hushed and just as I was ushered out the platform started its slow path into the scanner doughnut for his alignment. He was tattooed on the sides of head above his ears and down his spine and along his sides. He asked for equations but the dots are just that, tiny pinpricks so that he can be placed for thirty reproducible sessions of precision blasting.

Smoothing the Rough Edges

I am sitting here watching Orion sleep. He is being given his first hour of Etoposide, the nasty chemical that causes his blood pressure to fall. I am watching it slide down in real time on the monitor. His endocrinologist, Dr. Faselli was just in for an exam, having heard that he was fatigued. She talked her way through all the possible causes and came to the conclusion that it was the weight of everything that has happened since December.

Earlier he had an appointment with his neuro-opthomologist, Dr. Pless, who was in awe of the MRI. The way he described the scan made me think that this complete response is unprecedented. In the exam room Pless was reminded of some of the more bizarre symptoms that Orion presents- his pupils are completely non-reactive to light but will react to objects getting near his eye. His Perinaud's inability to roll his eyes upward persists as well. These symptoms are so rare many Doctors never see them outside of a textbook. He asked Orion if he could show him off and Orion, always gracious, allowed a fellow (actually a beautiful woman) to examine him.

He was given a prescription for a temporary fresnel lens to be applied to his glasses - tiny prisms to try out for a few weeks to cure his skewed double vision.

We are now past the blood pressure danger and have moved on to ifosmaside. Two more days of chemo!

He should touch his own brain!

At the very least when we are done with this and he is in Michigan, he should phone home.

Orion and His Nurses

This was put up to welcome him back. Everyone should stay in pediatrics!

Same crazy blue haze of electrons as that post describing Orion getting in to the University of Michigan PhD program in physics!!

Back in the Saddle Again!

Here is my Prince once again in Ellison for his last chemotherapy cycle, number six. We started this morning at Yaukey for the. Blood count letting. Once again his numbers were perfect. No transfusions to date, no delays in the PLAN. This session is five long days of hydration, ifosmaside, Etoposide, Mesna, and more hydration. Unending fluids running through his poor veins and arteries.

If it were not so awful this would be routine.

The big event of the day is that he heard in real time that his final Swartmore professor was walking his final college grade over to the registrar's office. The dean wrote to Orion "congratulations, you did it, you are done!". Just now, from his bed, he saw the grade on his transcript. He has managed to keep his stellar average.

We have a busy week ahead with some important appointments coming up on Thursday and Friday.

The Kid is Okay!

I know it gets worrying when I do not post but we are home now in Ashfield, between chemotherapy cycles, and it is a relief to pretend the last four months never happened. Orion is feeling good, looking good. His hair continues to leave him however. He is now nearly eyebrow-less and I suspect his arm hair is gone as well. A naked mole rat with a healthy complexion.

We will return to Boston on Monday for his last cycle of chemicals and the prep work for radiation.

Meanwhile he is enjoying being home and is just finishing up his final paper for his final Swarthmore class, Counter factual History. He also is enjoying his new blog on explaining everyday phenomena through the lens of physics, or Fundamental Forces http://fundamentalforces.blogspot.com/

Sweet and Cheery gesture followed by Depravity.

Sally took this charming scene in the Boston Public Gardens of Mrs. Mallard and the ack kids with their easter bonnets on last night. Today when we went by someone had stolen her bonnet.

Who are these males and where are their parents?

Our Son Also Rises

Orion's twenty-second birthday!

His girlfriend Jen came up from Swarthmore College, he baked himself a cake, Sally put out a Harvey basket for each of them. Last night Orion and Jen had dinner together at Toscana on Charles. Staying out of their way, Sally and I went out to eat at 75 Chestnut. Then we went to see Jane Eyre while they went back to the condo to make the chocolate cake.

But that was all after the four of us walked in the pouring rain to mail off his lease and deposit on the new apartment in Ann Arbor. A new lease on life in a way.

It is home to western Mass for us this afternoon for a week before returning to Boston for the final cycle of chemotherapy and two weeks of recovery.

The Gods Smile Down on Us!

We have returned from another clinic visit with Dr. Ebb (who visibly gasped when he saw the photo of Orion with the Bacardi Girls) and has released us to home once again. Orion's blood counts were great and every body was grinning. There was talk of papers published and champagne flowing.

Not quite yet.

We made the appointment for orion's last chemo cycle, which is inpatient in the pediatric ward on Ellison 18. While he is there, hooked to tubes of poison he will see the neuro-opthomologist for his double vision, diplopia, and he will begin his prep for the rendezvous with the cyclotron. If you checked in on his new physics blog you might have been amazed at the speed of the protons- 60% of the speed of light!

This weekend is Orion's 22nd birthday.

Spring in Boston

On our walk today to the Charles River Basin we found these lovely maple tree flowers

















And coming down Joy Street on Beacon Hill we saw this strange sight.

Fundamental Forces

Orion has started his own blog!

Fundamental Forces

Hold Fast

Another visit to the pediatric oncology clinic at the Yawkey Center at MGH, Massachusetts General Hospital for bloodwork today.

All systems, counts, values remain normalized, right down the line after five cycles of chemotherapy. This includes the cancer tumor markers of AFP and HcG. I find it very interesting to see the effects of the Neulasta injection that I administer to Orion. The clinic does not need me to tell them if I gave it correctly, they see it in the numbers.

I do not believe in magic or jinxing so I feel fine saying that we have come this far without vomit or the need for an infusion of blood. Remarkable!

Back to the clinic on Friday to look once more into the palantir.

A Race, A Contest, A Battle, A Challenge

All won through endurance, strength, and will.

Orion and I walked down to Hereford Street this morning, the small Boston side street that the marathon runners turn on to from Commonwealth Avenue before reaching the finish on Boylston.





Here the first women run past us. That is Caroline Kilel in the green jersey who goes on to win she is about to pass Desiree Davila!










Next come the top men. Again in green, it is Geoffrey Mutai who wins the men's race in record time. In front of him for just another minute is Moses Mosop, also from Kenya.







Finally we have another challenger, Orion. Here he is congratulated by a veritable bevy of babes.

A Quickening Pace of Life

Orion just had a call from the Uinversity of Michigan physics department where they offered him a Ford Fellowship, providing complete support for his first two years of research. Good thing I owned two Ford Tauri.


The Physics Department grants one Ford Fellowship each year. This award is sponsored by the Ford Motor Company. It provides two full years of support, full tuition and fees, stipend, health insurance and money for textbooks.

5/6 of the way to Radiation

In the Frog Pond Room, last of the Yaukey Clinic rooms for kids for us, depicting the ice skating in Boston Common.


Today Orion finished his fifth cycle of chemotherapy. It did not go so well as his blood pressure kept dropping from the etoposide flow rate. So nurse Patty kept slowing it down making for a long afternoon. We were in high spirits though because we had just come from an appointment with neurosurgeon Ziv Williams who did Orion's surgery, The Endoscopic Third Ventricularostomy, a lifetime ago on December 24th 2010. He told us that there were no issues, the tumor was gone, that the cranial spinal fluid was flowing naturally and there would be no more abnormal pressure. There was no longer a need for a surgeon. He was blown away that Orion is going to Michigan for the physics PhD program (he is a Stanford man himself).

Then Orion's oncologist Dr. David Ebb popped in to tell us that the entire MGH team of oncologists and neurologists had a meeting to go over Orion's progress and unanimously agreed that the cancer was gone and that the final leg of treatment was on track for a complete cure by mid July.

That now means he can get an apartment in Ann Arbor for his new life as a physicist. A year to remember for all of us.

Fenway Finally

Sally has written it before, no news is good news. Today Orion started Chemo cycle FIVE out of six. If you are counting, that is one more than Lance Armstrong. He feels good. We spoke with Dr. Ebb today who is encouraged by Orion's response to chemo and the tumor's response to the terrible chemicals as well. Orion has done well, the cancer not. Tomorrow Orion's response is the subject of Grand Rounds at the hospital where the best and brightest will discuss his results and tweak the final leg of his war with the cancer. Dr. Ebb and DR. Macdonald think we are on track for a cure and a timetable that will put Orion at Swarthmore Commencement at the end of May and at Orientation at Michigan in late August for the Physics PhD program.

So more on Thursday when he finishes the last Carboplatin/Etoposide duet and recovers for the next two weeks before the final round.

At the clinic today we were offered two wonderful seats to the Red Sox match against Tampa Bay. We sat right on the third base foul line and sure enough a ball came screaming right us, caught by four lovely young women in the seats to our right. We also had fun with a drunk from North Providence who brought a 12 ounce bottle of vodka and then added on a few beers. A cheery lad. A crazed ride home on the T and to bed.

The Blues

I was just sitting with Orion in the Founder's MRI waiting room for his post fourth cycle scan. The waiting room was hot and airless. We were told to arrive at 12:10 but found a sign that the receptionist would not return until 12:30. She showed up with an immense slice of cake and proceeded to eat it and sing the blues between mouthfuls. A pretty fetching voice and soulful sentiments. The phone rang and she gruffly answered with a rude "what?". After chatting with an adult aged child for ten minutes she decided to tell the radiologist that Orion was ready. They came by and got him ten minutes later. As soon as he left I ran outside to sit in the sun by the 1811 original MGH building to wait.

We have been cleared to head home for the weekend and so we will amble down to South Station to catch one of those buses named after clocks, crocs, and smocks.

Next Tuesday he starts chemo number five. He is feeling good.

Heading back Up

Once again Orion's body, with a little help from his new friend Neulasta, has responded and turned his blood counts back. His white blood cells jumped to 32,000 over the weekend, raising eyebrows at the clinic.

I asked the good Doctor Ebb for a simple status report and he said what I wanted to hear - Orion is doing great and there are no concerns. He does not expect much change on Thursdays MRI and does not need more blood until next week at cycle five.

Then we headed down to the basement to the Proton Center to see Dr. Shannon MacDonald, the radiation oncologist. She too called the last MRI a complete response and saw no reason why the planned proton beam therapy would be delayed and that he is on schedule for having daily radiation for six weeks starting June 6 through July 16. this gives him six weeks of rest before classes start.

Grandma and Auntie come for a visit!

Today Orion's Grandma and Aunt Linda came for a visit from New York State. We took them up to Ellison 18 were Orion spends so much time. Behind them in the photo you can see the Hancock building. We saw rain showers and a partial rainbow. Also visiting us was our long time friend Marsha from Maine.

Almost down for the Count

We were in the clinic today for bloodwork and when the numbers came back they were terrible lowest counts yet, just shy of forcing a transfusion. Yuck. We were warned to be extra vigilant for any signs of sickness this weekend and were told to come back on Monday morning for more testing.

What are they looking at? All very low were his white blood cells, hematocrits, hemoglobin and red blood cells. Platelets were just above bottom limits. More too, of course, but why list the whole butcher's bill?

On his Swarthmore studies he had a little squirmish (thanks S.P!) with the college registrar who sent him an email saying," are you graduating in May?" Orion immediately replied, uh, yes, is there a problem? No, there is no problem. He is on the list for Commencement as long as he completes the history tutorial with Prof. Burke.

Tonight's dinner capping off wild meat week? Boar's Balls.

Orion begged me not to go into the belief that you are what you eat. You know, if you eat lion you have the heart or courage of a lion. If you eat llama you have that indescribable disdainment for the rest of the universe, if you eat rabbit you are clever beyond the capacity of your average fox, if you eat boar you are unrelentingly dangerous. Likewise if you eat tofu you are mild, weak and wet, if you eat vegetables you are without movement, without passion. Right?

Brains, Balls, Bunnies and Boylston

We both had a very full day today and it is not over. Orion spent nearly five hours with a nordic psychologist Dr. Davidsdottir getting every corner of his brain pried open for a complete baseline cognitive assessment prior to his six weeks of radiation therapy sometime after Swarthmore Commencement. She says to me, "well, I guess I do not have to tell you that he is highly intelligent and has no learning disabilities". I replied "no, I guess he has that going for him".

While he was solving puzzles I headed out through the Common and down Boylston with the goal of reaching the Back Fens and Fenway, No, not the ballpark but the wetlands, where I hoped I would get a fix of nature. Nope. The Fen is filled with non-native invasive plants, trash and Canada geese. Little else. Sigh. I did enjoy Boylston Avenue with its myriad of human characters and bizarre outfits from drunks, to musicians, to toughs, to drop dead gorgeous women. Here is what I did not see- the elderly. One of my growing irritations with Boston is the condition of the sidewalks. Not one has been suitable for an elderly walker. Bricks are missing, curbs are heaved up, no utility or city worker thinks anything of leaving bolts and open wires growing up out of the sidewalks. Not a place for a walker.

Now as we round out wild meat week we have two choices that we have selected, one for tonight and one for tomorrow during the April 1 snowstorm. Wild Boar Balls or Bunny Sausages. More on those anon.

The photo is of poor hungry Orion after five hours of testing waiting for me to photograph his lunch, The 21st Amendment Burger at the lunch bar across from the State House, appropriately called the 21st Amendment. He says it was fabulous. I celebrated the actual amendment by having a beer.

TUNA!

The king of all fish, the ruler of the Vahalla of fishermen!

That is what Ernest Hemingway called Tuna. I was "into" Papa after reading a delightful book on food and Hemingway. The author went through all of Hemingway's books, writings, columns, and interview and came up with recipes and commentaries on Hemingway's gustatory loves. Yesterday's Lion meal was his recipe. So I came across something he wrote in "The Sun Also Rises", which he wrote in the summer of 1925 in Pamplona. He writes of the comraderie of men in a bar, arms about each other drinking Rioja wine and enjoying Escabeche de Atun, marinated tuna with onions. It sounded so appealing to me I made it for dinner this evening and my good friend, buddy, companion and son Orion enjoyed it with me as we retold the days walk and the running of the Boston autos through the narrow streets and confusing intersections.





I, for one, have been having a wonderful life.

The Mid-Day Walk of Orion Sauter

We had our first splendid spring day here in Boston and I warned Orion that we needed to make a significant effort at walking. He chose to head first to one of the Apple stores, this one at the Galleria Mall in Cambridge. He assured me that he was feeling fine, even though this past week's chemo session had exhausted him and left him five pounds lighter. Off we marched down Temple, turning on to Cambridge and heading for the Charles River. This morning there was a great commotion of emergency vehicles whose cacophony raised me from my bed. Out the window was a TV news helicopter pointing it's camera laden nose at the hospital. I turned on the news to see the very chopper. A T worker had fallen thirty feet down a shaft at the Charles St. Station, breaking both legs. When we reached the station all emergency workers had left but the news crews were milking the story. I loved that the story said that they had taken the injured worker to a local hospital. How much more local could a hospital be than walking across the sidewalk into MGH?

We picked our way across Storrow Drive and on to the Longfellow Bridge. Great views of the city but no birds on the water. None! Reaching the Cambridge side we headed east to the Galleria mall. Pretty bland stuff but I enjoyed handling the new iPad 2 and the Mac Air laptops. Orion shopped for new headphones and had an iced coffee to fortify himself. We struck out along the canal and walked to the science museum where I asked a Statie in dark sunglasses who was as big as a mountain for directions by foot back to Boston. He grinned and laid on his thickest accent. I thought of Alec Baldwin in "the departed".

We crossed the road and walked along the Charlestown shore where the Mystic river mixes in the marshes now largely drained and tamed. This is where the British Warship the Somerset was anchored the night of Paul Revere's ride. We angled and twisted along and finally landed in Little Italy. All along I had been asking Orion his status and watching him carefully. We had now walked more than two and a half miles. He replied that he was fine but fading. Quickly I chose lunch at Antico Forno and we were quickly seated with ice water in our hands.

Orion chose a three course lunch with an Italian beer, I went with my perennial favorite the pizza Margarita, also with beer. Delicious warm bread with oil and olives kept us busy. I delighted in watching him eat.

Back out into the sunshine we headed past Government Center and on to our apartment. More than four miles and now he sits reading. I am happy.

The Importance of Being Earnest

As part of our Hemingway wild game dinner we had Hemingway martinis - Gordon's Gin and Noilly Prat vermouth in a ten to one ratio. Ever the physicist, Orion saw this delightful optical effect.



Another installment in our wild meats week. Yams, French bread, Quinoa salad, and Lion chops. Yes, Lion. It was delicate and slightly sweet but TOUGH and we had no steak knives. Ah well. RIP Papa.

Disneyland it ain't

We were back in the clinic today to have blood work done. A new room for us in pediatric oncology, Disney characters. Orion laughed because I was outraged at the terrible disneyification of Pooh and just as outraged that MGH probably did not get permission to use these images.

The counts came back and once again lots of items high or low but quite impressive considering what he is going through. We go back on Friday for another set. Orion asked, well what can go wrong, whats the worst that could happen? They shrugged and said well we might have to give you a transfusion but that is quick and easy. Everybody left happy and we headed out to Savenor's to select tonight's wild meat.

Rest and Wild Foods Week

Our dinner this evening during rest and recovery week. He was pretty battered this cycle of Etoposide and Ifosmaside. More fatigue and more nausea than previous cycles. So I was looking for some fun and dubbed this wild meats week. We walked through Boston Common today, finding some signs of spring in this colder than average March. Daffodils, crocus, tulip leaves are up. Robins are everywhere. I found a song sparrow and grackles. A few days ago from Orion's room I spied the peregrine falcon pair who nest on the Custom House tower. I also picked off an osprey high above the Hancock Tower. Spring. It is TOO cold and windy so it was a relief to reach Savenors on Charles street, our goal. We pawed over the rattlesnake, lion, boar, squab, elk, kangaroo and god knows what else before settling on the Llama for dinner.

So in the photo are Llama roast, green beans, pilaf, Choyote with caramelized onions and roast red potatoes. Yep, that is how we live!




I have always loved helicopters, starting in the early 1950's when they landed in my housing project yard for rescue operations during Hurricane Diane. So every time I am in Orion's room in Ellison and I hear loud rotor noise I run to the opposite side of the building to see the lifeflights coming in. I am addicted.

Waiting for Release

Orion has finished his fourth chemo cycle, two more to go! If he is well hydrated we should be back in the apartment by 9:30 tonight. He has been very tired and his appetite has been poor. His tumor markers of AFP and HcG have fallen to normal.

Next week is rest and relaxation with a few doctor visits to the clinic for blood work and a special one to have a baseline neuropsychology study done prior to proton therapy which is pencilled in for the end of May after Commencment at Swarthmore.

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.