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.