A Sailor Dad With a Systems Engineering, Architecture, and Consulting Problem
Mike in the Color Guard at a parade.
I figured I would send out a follow up about Mike since it’s been a while. There’s nothing really new going on except that Mike and his family are back in Michigan getting back to their normal lives. He’s doing quite well and has no major ill-affects from the tumor or the surgery. His head is healing nicely and his hair is growing back enough to cover the scar.
That’s pretty much it. He’ll be back here in April for an MRI and for my Wedding.
Removing the staples at UWMC
Well, we met with a bunch of doctors today, Dr. Silbergeld and Dr. Gabikian who we’d met before, plus the Attending Radiation oncologist, his Resident, and the Chemotherapy Attending.
Dr. Gabikian removed Mike’s staples (about 50 of them) and sutures, then Dr. Silbergeld talked about the tumor.
Mike has a Primary brain tumor called a Supratentorial Glioma and it is a Grade 2. Gliomas are of two types, Astrocytomas which are made of astrocytes, and Oligodendrogliomas which are made of oligodendrocytes. Mike actually has an Oligoastrocytoma which contains both types of cells, hence the more common name of “mixed glioma”.
A primary brain tumor is one that starts in the brain and does not appear in other parts of the body. Supratentorial means that it is above the tentorium membrane which separates the cerebrum from the cerebellum. A primary brain tumor is, by definition, not cancer. Cancer implies the ability to spread to other parts of the body which brain tumors don’t do.
The doctors said that there is no way to get ALL of the tumor cells out during surgery and as a result there is a 100% chance that the tumor will re-occur but we won’t know how soon.. It could be a year or 10 years. They recommend that Mike watch the tumor with MRI’s every few months for now and see if it’s changing, regrowing, etc. If it starts to come back, then he’ll have to go through radiation treatment to kill the tumor cells but they’d prefer to wait since there are side-effects of the treatment.
Another thing about brain tumors is that they grow by invasion, meaning that they convert good brain cells into tumor cells. Over time, this *could* cause neurological damage but you just never know if, how, when, or what it will effect.
All in all, the prognosis is as good as it can be for a person with a brain tumor. It’s statistically unlikely that the tumor will grow much in the next 12 months and the doctors hope that he can go 5, 7, or more years before it grows enough to need radiation. For now, his brain is working well and his body function is good. Mike will be going back to Michigan at the end of the month and start observational MRIs every 3 months at U of Michigan most likely for now.
Mike at home after Surgery.. He’s pretty swollen which makes his face look a little distorted.
Today we are going back to UW for Mike’s post-op consultation. We should find out the results from the pathology tests so this is the big day. Honestly I think this is bigger than the surgery itself.
Mike has been hanging around at home recently, relaxing and healing. He seems to be doing better and his spirits are much higher now.
I’ll post again later in the day following the appointment.
Mike in the ICU on Wednesday
On Thursday, Mike was still in and out of sleep most of the day. In the afternoon he started to stay awake longer and asked for a danish, coffee, and a newspaper. His older son, Itaru, got to go visit him Thursday as well which was good. Ita (8 years old) had been worried and wondered why he couldn’t visit his dad.
Mom and Tim went over to UW again about 4pm Thursday and at about 6pm he was moved out of ICU into a regular room. He was awake much more Thursday afternoon and Friday morning and is able to converse now.
At about 1pm today, Mike was released from the hospital and is now home. He’s on a lot of pain killers at this time but he’s doing pretty good.
As for diagnosis/prognosis, we won’t know anything about the type of tumor until next week when the pathology reports come in. We’ll meet with his doctors for those results and much will be revealed then.
10:45am and he sort of woke up. The nurse asked him a few questions and he seemed good. When she asked him what he had done here in the hospital, he replied….
“I got a chunk of brain taken out”…
I’m pretty sure that kind of answer means he’s doing very well. Immediately after that, he fell asleep again.
A few minutes ago the nurses helped him turn to his other side and got him to swallow some pills with water so he’s doing alright presently.
Most recent conversation… Nurse asked him where he was trying to go and he said “Anywhere but here”
ICU Monitor
I arrived at UW about 8am today to see how things are going. Tim and Yoko got here about 7am. Mike was a little restless but overall fairly calm. Blood pressure and heart rate are pretty good. The nurse here this morning said that they tried to get an MRI last night but it took 4 people holding him down and they still couldn’t get it. So they postponed for now. They gave him some morphine today to help.
He’s pretty much sleeping but every once in a while adjusts his position. His feet and hands were strapped down but after letting one hand free he seems a bit happier. At one point he moved and said “ouch” in Japanese. He’s opened his eyes a few times when he moves around.
One of the Neuro docs popped in about 30 minutes ago and asked Mike a bunch of questions which he surprisingly answered. He knows he’s at the Hospital, knows it’s UW, even knows that it is Wednesday, and where he lives. For the most part he just wants to keep sleeping though. And he’s got some pain but it’s not clear where.
Every hour or so his blood pressure goes up, then down. It sounds like they want to get him some water and/or food but want him to wake up first. They also want to get him into the MRI again when they can.
ICU Waiting Area, UWMC, 5E
We watched this door open and close for 3 hours before we got to go through it.
As planned, Tim and Yoko drove Mike to UWMC at 5am today. After checking in Mike went off with the doctors. The pre-op MRI was over an hour late so the surgery started at 9am (about 90 minutes late). I picked up my Mom about 10:15am and drove over to meet everyone. We all waited in the Surgery Waiting Room for the duration and at about 1:15pm Dr. Silbergeld came in to give us the post-op update.
The surgery went well, it took about 4 hours, no major blood loss or complications. They expected him to wake up in the recovery room in about an hour and a half then transfer him to ICU where we can visit him.
2 hours later we headed to ICU (in 5E wing) and ended up waiting another 2 hours before we could see him. The doctor then told us that Mike had a seizure during the surgery which is not really common but not altogether unexpected. As a result though he’s having trouble recovering. He still wasn’t awake, but he was thrashing about trying to pull tubes and wires off his body, and the nurses were having trouble restraining him.
Quote of the night (via Dr. Gabikian) – “He’s a big guy, who had a seizure during surgery, he’s not real happy right now”
In the end we decided to leave, he most likely won’t be awake for several more hours, they are going to do another CT and another MRI in that time to check on things. Dr. Gabikian did say he’s confident that Mike will be fine once he fully wakes up. Mom, Yoko, Tim, Myself braved the rush-hour traffic, rain, and high winds across the 520 Bridge to get home and be with Mike’s two boys. Mike’s real dad, Dan, stayed for now. Tim and I are thinking we’ll go back after dinner and check in. Seeing him in ICU was a little shocking, he definitely looks like he’s been through some trauma.
Devon made very good casserole for everyone which was awesome!
While we were eating dinner at home, Tiffany (Mike’s ICU Nurse) called with a few questions and told my mom that they did a CT scan and it looks really good. Apparently they had to give him a sedative just to get the CT scan done. So now he’s got the brain surgery, seizure, anesthesia, AND a sedative keeping him out of it. He still wasn’t awake and he was still thrashing about in his bed. The fact that he isn’t awake IS a concern. My aunt, who is a nurse in San Francisco, mentioned that they generally DON’T give brain surgery patients any sedatives since it can affect the process or orientation following the serious.
Scoring him on the GCS (Glasgow Coma Scale), based on what I saw in the ICU he shows up about 6. 8 or less is a “Severe Coma”. I believe that this is all related to the trauma from surgery and seizure but it is still disconcerting.
Later, Mike’s dad Dan called and said that he had sat with Mike in the ICU for a while, just telling him everything is okay and holding his hand and finally Mike settled down and appeared to be sleeping.
Tomorrow we are hoping to get some information from the MRI early AM and some of us will be heading over there pretty early in hopes of seeing him awake. Assuming he wakes up…..
UW Medical Center Campus
Today my brother had pre-op appointments with the Neurosurgery and Anesthesia clinics at UW Medical Center. They filled out all the necessary paperwork and described the entire procedure in detail. He will be under general anesthesia during the operation.
The schedule is pretty well set for the Tuesday surgery…
I’ll be heading over there sometime in the morning but I’m not entirely sure when. I might go sometime around 10am and take either my mom or my brother’s wife with me since they will likely be home still.
Mike just after Christmas, he shaved his head for fun since he knows it will be shaved by the doctors anyway.
Yesterday we took my brother to UW Medical Center for an MRI and consultation. The MRI took about 40 minutes and we then went upstairs to Neuro-Surgery and checked in. After reviewing the new MRI and the CT from japan, the Chief Resident on Neuro-Surgery there came in to talk to us. Dr. Patrik Gabikian who seems to be about the same age as me has a good smile and started off asking my brother about his seizure, about any other symptoms (which turned out to be Aura’s that he’d been having for a couple months) and then asked about all sorts of random things. The serious of questions were purposely designed to establish how his brain was working and establish right/left dominance.
Dr. Gabikian explained that there is an “abnormality” which appears to be a tumor, in the right frontal lobe. The good news is that my brother is left-brain dominant so language and cognitive functions are fairly safe but it could still affect motor function. The mass is about 55mm (just over 2 inches) in size and it concentrated but irregularly shaped.
He gave my brother 3 options,
1.) Do nothing and let it go, check it in a few months.
2.) Perform a biopsy to get a diagnosis from pathology, then come back for further treatment.
3.) Skip the biopsy and have surgery to remove as much of the mass as possible and give it to pathology for a diagnosis.
Obviously the doctors recommended option 3 because it means only a single operation, and better chance for diagnosis. Risk of complication seems about the same and it accelerates the treatment.
After that discussion, we met Cynthia, the Case Nurse/Patient Coordinator that I’d been talking with on the phone to get the appointment and she introduced us to Dr. Daniel Silbergeld, the Attending doctor and head of Neuro-Surgery at UW. He showed us the MRI and went over the options again, and some details about the surgery itself. He explained that he only works on Brain tumors, has been doing it for 25 years and said there is no way to know what kind of tumor it is without the pathology tests and as such will not make any guesses about it until pathology results come back approximately 5 days after the surgery.
I got the sense that these 3 people are a VERY good team. Dr.Silbergeld has extensive experience–apparently he trained the Nuero-Surgeons at Swedish. He has worked with Cynthia for close to 20 years and Dr. Gabikian seems highly intelligent. All three have very comforting “bedside manner” but are also very direct.
So my brother has pre-operation appointments totaling 4 hours on Friday 1/2/09, then the actual surgery is scheduled for Tuesday 1/6/09. UWTV has video available online about a patient who went through this whole process.
http://www.uwtv.org/programs/displayevent.aspx?rID=4129
It’s definitely an advantage to be living so close to UW and Fred Hutchinson
Somewhat related – I found an interesting article about Tumor Paint from Fred Hutchinson, and apparently Dr. Gabikian was one of the researchers who found a technique for illuminating small pieces of cancer cells that the MRI can’t see.
My Brother’s CT film from Japan. The dark spot is the tumor. The top of the film is the front of his head (forehead).
My brother’s flight from Japan landed Christmas morning in Seattle. After doing the Christmas morning thing with Devon’s family we headed back to my parents around lunch time. He seems in good spirits but he’s in obvious pain, he’s tired, he’s weak.
We played Uno, had some lunch, ate ice cream, tried a rice snack from Japan, and generally hung out around the house. My brother had his CT scan film from the hospital in Japan so I had to look, and I took a photo. In the above picture you can see the tumor, it is the large dark area in the upper right corner. It is up in front near the forehead.
Tomorrow we go in to UW Medical Center in Seattle for an MRI scan. I’ll be really interested in hearing from the UW doctors about the details of this thing.
More to come as details emerge..