Friday, December 31, 2010
On the road again
We are on the MassPike heading westward with the Prince himself. He is asleep in the back seat clutching a bottle of Powerade. We hope to be toasting the new year with champagne later tonight.
Proton vs. Photon accelerator
Ayal, a radiology fellow, came to talk to us and introduce the MGH radiology team. They recommend that Orion have his radiation treatment here because they have a proton machine ($155 million; one of about 8 in the country) rather than "just" a photon machine. The advantage is that photons go through the tumor and out the other side. Protons stop at the tumor and so protect more parts of the body from radiation. That's good.
He also told us that Orion will be treated by the pediatric radiology team since he's on the cusp age-wise and they have more experience with this kind of tumor.
He also told us that Orion will be treated by the pediatric radiology team since he's on the cusp age-wise and they have more experience with this kind of tumor.
The Neuro-Oncology Team, Chief amongst our weapons are chemo, radiation, and..
We just met Dr. Chi, today's Neuro-oncology attending. He talked with us about Orion's germinoma and gave a feel for the treatment plan. He said this is a very unusual cancer for an adult. Usually MGH has one case per year. There have been 3 this year. It's more common with children, so because of Orion's age, they will confer with the pediatric neuro-oncologists and may even decide to turn the treatment over to them. For now, Dr. Hochberg, whom we met earlier this week, will be the neuro-oncologist in charge.
Chi said the cancer is disseminated, so it needs to be treated more aggressively than if it were consolidated in one spot. (No definitive word on the spinal MRI from radiologists, but the oncologists say they saw no tumors.) They expect to do a mix of radiology and chemo over the next six months. The chemo will likely be 4 sessions requiring a 4-6 day stay each and radiation will be every day for a period of 5 weeks with unknown start. None of these treatments will start for a couple weeks. There will also be an endocrine team since the tumor is near the glands.
The appointments are starting to pour in. Orion's scheduled for 3 blood tests next week near home. We'll have an office visit (aka clinical visit) for more details on the treatment plan on 1/10 here in Boston.
Chi said the cancer is disseminated, so it needs to be treated more aggressively than if it were consolidated in one spot. (No definitive word on the spinal MRI from radiologists, but the oncologists say they saw no tumors.) They expect to do a mix of radiology and chemo over the next six months. The chemo will likely be 4 sessions requiring a 4-6 day stay each and radiation will be every day for a period of 5 weeks with unknown start. None of these treatments will start for a couple weeks. There will also be an endocrine team since the tumor is near the glands.
The appointments are starting to pour in. Orion's scheduled for 3 blood tests next week near home. We'll have an office visit (aka clinical visit) for more details on the treatment plan on 1/10 here in Boston.
Thursday, December 30, 2010
The verdict is in
Orion's neurosurgeon stopped by with the best of all possible tumor identifications- a germinoma. Prognosis is excellent after radiation and possibly some chemo. We will hear about treatment plans tomorrow.
http://en.wikipedia.org/wiki/Germinoma
XO
Sally and Steve
http://en.wikipedia.org/wiki/Germinoma
XO
Sally and Steve
Each team is wrapping up
The occupational therapist (Kim) said Orion did just fine. Her concern is not simple stuff like she has been asking of him, but the complex task of being a student. She wants him to meet with someone in our area twice before he goes back to school - and she clearly believes he should go back to school - to make sure he has techniques for doing his work successfully, e.g. taking notes.
The occupational therapist activity was followed by a visit from the physical therapist (Heidi). She says that Orion's record shows that they are planning to release him tomorrow. She wanted to do the tests to make sure he was ready from her standpoint. She tested his resting blood pressure, then took him for a walk, tested him, took him up and down a couple flights of stairs, and tested him again. She feels he's fine, but she reminded him that he just had an operation and at home, if he gets up at night, he should turn on the lights and make sure he's steady.
Next came the endochrinologist. She's also satisfied with his recovery, but wants him to continue on a low dose of steroids for the next 2 weeks and have lab tests to monitor progress.
Finally the neuro team stopped by. This did not include the surgeon we saw at lunch so no new information. But they, too, seem to be ready to let him go. Regardless of the news we get on the tumor, he needs to heal from this surgery before they do more stuff.
Still waiting for the surgeon (Ziv Williams).
The occupational therapist activity was followed by a visit from the physical therapist (Heidi). She says that Orion's record shows that they are planning to release him tomorrow. She wanted to do the tests to make sure he was ready from her standpoint. She tested his resting blood pressure, then took him for a walk, tested him, took him up and down a couple flights of stairs, and tested him again. She feels he's fine, but she reminded him that he just had an operation and at home, if he gets up at night, he should turn on the lights and make sure he's steady.
Next came the endochrinologist. She's also satisfied with his recovery, but wants him to continue on a low dose of steroids for the next 2 weeks and have lab tests to monitor progress.
Finally the neuro team stopped by. This did not include the surgeon we saw at lunch so no new information. But they, too, seem to be ready to let him go. Regardless of the news we get on the tumor, he needs to heal from this surgery before they do more stuff.
Still waiting for the surgeon (Ziv Williams).
Amongst our weapons are surprise, and fear, and....
Orion has ventured out with the occupational therapist on a mission to the hospital gift shop where he has been tasked with buying a card, a candle, a pack of gum , and a magazine. All must total under 10 dollars . Then he has to find his way back to his room. I doubt I could this!
As Sally and I had lunch I could see the neurosurgeon who did the ventricularostomy. The surgeon nodded to me. The surprise was when he walked over and said, "hey i will see you later with some sort of good news" . I asked if he was going to tease us with that and not say more. Yes.
So surprise and fear.
Always look on the bright side of life.
As Sally and I had lunch I could see the neurosurgeon who did the ventricularostomy. The surgeon nodded to me. The surprise was when he walked over and said, "hey i will see you later with some sort of good news" . I asked if he was going to tease us with that and not say more. Yes.
So surprise and fear.
Always look on the bright side of life.
We have moved out of intensive care
We just moved to our new digs after another cat scan. Now Orion has a roomy, a middle aged brain cancer patient on his last chemo round. Upbeat friendly guy.
New nurse seems great. Orion is free of all leads and tubes and his free to get up and walk anytime. We have retired to a lounge with view of the statehouse dome. There is family here with three young kids. Easy to imagine us eighteen years ago.
He is scheduled for a full spine MRI So they must be looking for skip lesions, an unpleasant thought.
He is cheery and his mental acuity seems back to super genius.
New nurse seems great. Orion is free of all leads and tubes and his free to get up and walk anytime. We have retired to a lounge with view of the statehouse dome. There is family here with three young kids. Easy to imagine us eighteen years ago.
He is scheduled for a full spine MRI So they must be looking for skip lesions, an unpleasant thought.
He is cheery and his mental acuity seems back to super genius.
12/30 Plans
Arrived to see Orion up and fresh. Today's nurse says that they'll do a CAT scan and move him to a regular unit today. Also, she'll remove the one arterial IV - yay, fewer tubes. No docs yet.
Wednesday, December 29, 2010
Video of endoscopic third ventricularostomy
This is not for the squeamish but I offer it up to the curious. This is the view by the surgeon through the endoscope as he moves through the third ventricle at the very center of the brain and then perforated the membrane at the floor. Like Orion, this patient has an obstructing lesion. When the hole is made you can see the release of pressure.
http://www.youtube.com/watch?v=8hnaKSpwYAg&feature=youtube_gdata_player
This is NOT Orion!
Sweet dreams.
http://www.youtube.com/watch?v=8hnaKSpwYAg&feature=youtube_gdata_player
This is NOT Orion!
Sweet dreams.
Yang can Yank
Dr. Yang came by, chatted with Orion, looked at his numbers and said "okay let's yank out that last EVD tube". Then he did it. So left in him, His only sensors are BP,EKG, O2.
He looks good. The plan is to move him out of the NICU tomorrow morning into a regular room.
This afternoon he walked around the unit six revolutions, dragging his tree of equipment.
NO pathology results yet.
He looks good. The plan is to move him out of the NICU tomorrow morning into a regular room.
This afternoon he walked around the unit six revolutions, dragging his tree of equipment.
NO pathology results yet.
Waiting game
It's so hard for families. We arrived at 8 and were told they weren't ready for us. As we waited, I saw a woman try to peer into the unit. The glass on the door to enter ICU is opaque at waist level and above, but clear at the floor. I saw her squat and look around at ground level. I said, "I'm glad I'm not the only one who does that." She and her family had been waiting since 4:30am to see their loved one who was brought in at 8:30 last night. You know the staff is doing what they think is best, but it would be nice if they gave a little update "still not ready" every 1/2 hour or so.
Anyway, we only waited 45 minutes and ta-da, found Orion with a single EVD. One of the doctors stopped by to say the plan is to remove the other this evening or tomorrow, then send him out of ICU. Orion was eating breakfast and delegated the task of filling out the menu forms for today to us. He's getting used to the routine which makes me sort of sad.
Rachel and Dave are on their way, and we hear that the physical therapist will take him for another walk.
Anyway, we only waited 45 minutes and ta-da, found Orion with a single EVD. One of the doctors stopped by to say the plan is to remove the other this evening or tomorrow, then send him out of ICU. Orion was eating breakfast and delegated the task of filling out the menu forms for today to us. He's getting used to the routine which makes me sort of sad.
Rachel and Dave are on their way, and we hear that the physical therapist will take him for another walk.
Tuesday, December 28, 2010
Promises unfulfilled
Well, that's a slight exaggeration. Some promises were met. He did have the CAT scan. They said it looked about the same as the prior one which they say is fine. In the afternoon the physical therapist took him for a walk - three times around the unit. That was good since Orion's legs were getting stiff.
Most of our time is spent waiting, which is surprisingly tiring. They have decided to wait one more day before removing the EVDs. (I almost called them IEDs. They have that look.) They want to be extra cautious. But it's a balancing act. Once they are out, they are out. But if you keep them in too long you risk infection. We now expect tomorrow for the first one, a day of watching, and then next day for the second, then another day of watching. So it looks like we may leave Friday.
We met the occupational therapist today too. She talked to Orion about making sure he's ready to go back to college - stairs, meals, independence, mental focus.
There's a constant flow of doctors stopping in for 5 minutes and checking on him. They all have done their homework and know all about his history. They are friendly and available for questions. Gives confidence.
Most of our time is spent waiting, which is surprisingly tiring. They have decided to wait one more day before removing the EVDs. (I almost called them IEDs. They have that look.) They want to be extra cautious. But it's a balancing act. Once they are out, they are out. But if you keep them in too long you risk infection. We now expect tomorrow for the first one, a day of watching, and then next day for the second, then another day of watching. So it looks like we may leave Friday.
We met the occupational therapist today too. She talked to Orion about making sure he's ready to go back to college - stairs, meals, independence, mental focus.
There's a constant flow of doctors stopping in for 5 minutes and checking on him. They all have done their homework and know all about his history. They are friendly and available for questions. Gives confidence.
Laugh till you die, I mean cry
Have you ever read Wonkette? Try it at Wonkette.com Dear son-in-law Dave put us onto it. An irreverent political blog. I was just reading it out loud to Orion and Sallly and started spiting out my nose. Sally took over and Orion caught the moment, eyes clamped shut, shoulders heaving, face turning red. Suddenly his ICP went crazy sending alarms ringing all over the ICU. His nurse appeared and was merely amused. Once we stopped reading Wonkette things quickly returned to normal. The lesson? NO laughing ever again.
As far as the day's promises go only the Cat Scan has happened.
As far as the day's promises go only the Cat Scan has happened.
A Day of Promises
Today, the 28th, is a day where Orion is promised a portable Cat Scan but it keeps being taken by STAT emergencies. He is not an emergency, thankfully. If the scan looks good they will remove one of the EVDs, those ventricular drains that have been closed for 24 hours now. All the numbers look great suggesting that the purpose of the surgery has been fulfilled. He also has been promised the removal of the catheter. A physical therapist has also appeared bubbling with enthusiasm about getting him up and walking the halls.
And special treat, Rachel and Dave may come down for a second visit from NH.
And special treat, Rachel and Dave may come down for a second visit from NH.
Monday, December 27, 2010
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