update

We went to a few doctors a few weeks ago and the scoop is this. Jeff has a tumour growing on his optic chiasm which is where the nerves from the two eyes meet. (the absolute worst place in terms of vision loss). The neuro-opthamologist recommends surgery to remove the tumour or she predicts Jeff will go blind. The surgeon doesn’t want to do surgery and make things worse so he is being very cautious about going back in for more surgery. He has ordered another MRI for this week and we have another appointment next week with the surgeon. At this point we are not really sure if we want the surgery to go through or not. If anything goes wrong in the surgery it could leave Jeff blind and the risk is high. But if the tumour keeps growing or even just stays their without growing it could/will slowly kill the optic nerve, leaving Jeff blind. Right now we are just praying that the tumour will go away.

Pictures

Now that we are home and settled, I had a bit of time to get some pictures on my computer. From the first to last day in the hospital. 

The day after surgery.

This is his forehead after the seizure (he bonked his head on the floor)

Staples

All healed up.

Coming home!

Jeff was released from the hospital today!!! What a happy day! We are staying overnight in Calgary for one more night and then home tomorrow. Jeff is still super tired but happy to be out. We just have to weather all the trips to calgary now.

New news

The surgeon came to talk to us yesterday and revealed all the information he has been keeping secret for the last week. Turns out the pathology reported this thing in his head to be something totally different than what everyone had thought it was. The report says its a dermoid which is not cancerous and will not respond to radiation or chemo. So from here on out there will be no formal treatment. Jeff will be watched VERY closely for the next little while and if anything changes in his vision then they will think about going back in and doing something about the lesion on the optic nerve. For now we will wait and see what happens.
Jeff has been feeling much better the last few days and it turns out there was no infection in his brain just something they called a chemical meningitis, they have attributed this to blood in his CSF. We still dont have a timeline as to when we might be able to get out of here but things are looking much better.

Treatment unknown

We are still waiting to hear from the surgeon about what they actually found and what the plan is from here on out. We know the surgeon is doing a lot of homework and talking to some others about what to proceed with. Hopefully we hear some news soon.

it continues

So after 6 units of platelets and the nurses keeping Jeff up until 4am, his blood still wasn't clotting the way it should have. It took some debate between the doctors but they finally decided to give him a "super drug" called octyplex. It seemed to work because the lumbar puncture was done soon after we arrived to the hospital. Since the LP was done, they could now start him on  some hard core antibiotics. They don't mess around with infections in the brain. Friday was a day for meds. They pumped him full of every antibiotic they could think of and his dilantin (anti seizure medicine) level was low so they pumped some more of that in him as well. They also started Jeff on sodium pills to try and increase his sodium levels. With all of this gonig on and since we have our little man with us in the hospital every day, the nurses decided it was better for Jeff to be in a private room. The private room didn't last for long since someone else needed the room the next day so Jeff got moved into a new room. We still aren't sure of what type of infection he has, if he even has one. Jeff is super sore in the hips and back and neck which makes walking hard but he is getting up moving a bit. Some of the pain is from the the LP some from laying in the bed for a week and i'm sure some from an infection.
We are not sure about when we can leave the hospital now. We have to get the infection under control and then figure out the sodium issues and then find the right levels for his dilantin and then maybe we can think about going home (at least for a few weeks before treatment starts).

Blood work, Platelets, and Infections

Early morning yesterday Jeff's temperature spiked and worried the doctors and nurses. Because his temperature went up and his neck and back have been stiff and his energy levels are low, they thought he might have an infection in his spinal fluid. By the time we got to the hospital at 11am he had already had blood work 4 times and when we left for the night the blood work count was up to 8. During one of those times it even took 4 pokes before they could get any blood. The reason for all the blood work is Jeffs blood isn't producing a clotting agent and so his blood is too thin. In order to find out if there is an infection in his spine, they have to do a lumbar puncture but they didn't want to do a lumbar puncture unless they knew for sure he wouldn't bleed out because his blood isn't clotting. So, they had to give him platelets in order to get his blood to start clotting so they could stick a needle in his back to find out if he has an infection. It makes me tired just thinking about it. Jeff has been feeling "with it" just super tired. When I asked if he wanted to write something yesterday, he said he wasn't up for it just yet. He ate a little bit more yesterday than he did the day before. They still havent done the lumbar puncture since his blood still isnt at a safe level but hopefully they can do that today.

Hanging in there

Yesterday was a good day, Jeff was able to get up again and and physical therapy he did some more steps and didn't miss a single one. That means he is improving! His sodium was lower yesterday than it was the day before so it looks like we have to be in the hospital for a few more days until they get that under control.
One of Jeff's Dr.'s came in to talk to us yesterday and was hoping to discuss the pathology report but since we haven't heard from the surgeon, she wasn't able to tell us anything. She did tell us she would talk to the surgeon and tell him to get his butt is gear and come talk to us. It should be soon.
If all goes well, we will go home soon and in about 6 weeks we will be back up here for treatment. Hopefully Jeff will be well enough to finish school in that time and he will be able to go through treatment without having to worry about school.
Every day is a steady improvement and we really do attribute that to the many prayers that are being said on his behalf.

Up and Walking

Jeff was doing much better yesterday and even got up to read some of the comments you left on the last post! He was going to write a little something to all of you but there was a lot going on with physical therapy and occupational therapy and his nurse (who was awesome) getting him up to walk around the unit. I will bring the computer to the hospital today and maybe get him to say hello to you.
The physical therapist says he is moving really well. He is still a little wobbly on his feet and had to hold onto the railing a few times. He also missed a few steps going up the stairs but he is improving and happy to get up and walk around. The occupational therapist came in and asked a few questions and said he would hold off testing until the last minute in order to give him the greatest advantage. I don't think there will be any problems there though. Jeff has been keen and on top of things.
The nurse that works with Dr. Starreveld (the surgeon that did the surgery) came to talk to us and said Jeff might be able to go home today or tomorrow. We will see how things go today. Jeff had blood work to check his sodium (since that was an issue last year) and the numbers were a little low (last year they were too high) so they said they would just give him sodium and check the numbers again before they send him home. That should only take about a day so we may or may not be out of the hospital by friday! WooHoo!
I have heard rumor that the pathology repots are back and I have been keeping Dr. Starreveld on his toes but I havent been able to get any information from him. He still needs to talk to several other people and make a plan before he can give us any useful information. Its nice to know he is on top of things though and I have total trust in him and his decisions. I know he has been working hard to figure out the best plan of action for Jeff.
Other than that, Jeff phoned this morning and said he was heading down to do some more physical therapy and that he is feeling much better than he was yesterday (and yesterday was a good day) so we are looking forward to a great day.

Seizure #2

This morning at 7:30 am Jeff phoned me chipper and alert (a total change from yesterday). I was excited to talk to him and hear that his night went well. This morning he didn't eat much but was slowly getting his appetite back. We were told his drain was going to come out soon and things were looking really good. He talked to us and was awake and looking forward to being unattached from some of the tubes. He was even well enough to get up and walk to the bathroom on his own. While he was in the bathroom I was waiting by his bed in the room and I heard a crash. I knew it wasn't right and ran to see what happened. I saw him on the floor and quickly yelled out the door to get a nurse FAST. Jeff was having a seizure. His drain had broken in the fall and CSF was leaking all over the floor. About 6-7 nurses came in and made me wait outside while they checked his vitals, gave him oxygen and tried to move him back onto his bed. The seizure only lasted for about a minute or 2 but the CSF loss was significant not to mention the huge goose egg on his forehead from smashing against the bathroom floor. He came back quickly and was able to tell us who he is and what year it is. Vitals were checked every 15 minutes and they have stayed steady. When he came back "with it" and I was able to talk to him, I told him he had a seizure and I think his biggest concern was if he would be able to drive or not (he was told he couldn't drive after his last seizure). He is much better now, just tired from all the stress his body just went through. We made him eat a few bites of a sandwich and a popsicle but he wouldn't eat much more than that. He needed to rest so we came back to the hotel and dont know anything more.  

still no answers

We were expecting to know some more answers after the surgery and they got a piece of whatever it is growing in there but we still have no answers. It will take 5-10 days before we can get the pathology report back and then they will decide on a treatment plan from there. Jeff was moved from the UCI side of 112 onto the regular side since he is doing good in his recovery. They are still monitoring his ICP (the pressure in his brain) through a drain in his brain. The pressure has been good so far and hopefully they will take the drain out soon. Today he is super tired and said the surgery and everything is catching up to him.

Jeff has alot of doctors on their toes trying to figure out what exactly is happening to him and why. Last year the pathology report came back telling us it was a teratoma that was removed but a teratoma is not supposed to grow at the rate in which Jeffs tumor is growing. We have been told that jeffs case is a very unusual one. We have some great doctors and they are really doing their homework on this one.

Surgey

This morning we went into the Foothills at 5:30am and after waiting and waiting and a last minute MRI and then some more waiting, I got to talk to 2 nurses, 2 surgeons, and the anesthesiologist. It was quite the morning and Jeff was rolled into the OR at 9:15. I just got a phone call now that he is out of surgery an in recovery and I will be able to see him in about an hour. Surgery went well and the surgeon was able to do what he wanted to do.

The day before

Today is the day before surgery. Jeff went to write a midterm this morning and finished one of his classes before we headed up to Calgary. We got a phone call from the Drs office informing us to be at the hospital tomorrow morning at 5:30am. Surgery should start around 8:30am. We don't know how long surgery will take. But I am expecting at least 3 hours. Alot shorter than last time.

questions

If anyone has any questions that I havent answered here or you want to know more about something, just let me know. I'm not really sure of what people know and dont know so I dont really know what to write.

Brain Surgery Take 2

So now it has been just about a year since Jeff’s first brain surgery and until about a month ago we thought we were in the clear. Jeff’s eyes have been progressively getting worse since the surgery and we have been going to different eye doctors to see what the problem was. It wasn’t until last month when we went to see a neuro-ophthamologist that we found out a new lesion is pushing on the optic nerve in his brain. The neurosurgeon looked on Jeff’s last routine MRI and found new lesions. The decision was made to go back in and get a piece of these new lesions that are growing to try and decipher what exactly is growing in there. This time the surgery will only be the start of our journey. Once they figure out what exactly is growing, they will make a game plan from there. So it looks like we have another year of hospitals and doctors and waiting for answers. The surgery was initially scheduled for February 8th and was cancelled about a week prior and we have been waiting for a new date since. After some slight harassment on Jeff’s part (calling and e-mailing the surgeon every few days), he was scheduled in for March 4th.

The beginning

I'll give a little recap for all of you who are unsure about what it going on with Jeff and his health. Last March (2010) Jeff had a CT scan which revealed a rather large tumour in his brain. For all you technical people out there, it was a mature teratoma residing in the 3rd ventricle of the brain. So basically it was a tumour made up of skin, nerve, cartilage, muscle, and hair follicle cells located in the very centre of the brain.

If you look on this diagram you can see where it points to the third ventricle.

Jeff had brain surgery in April 2010 to remove the tumour and recovery was slow. Some complications were seen when he developed Diabetes Incipidus which is basically a sodium problem. After 3 weeks in the hospital in Calgary, Jeff was transferred to the Lethbridge Hospital for another 5 days.

Since then Jeff's recovery has been slow and in July 2010 he was set back by a grand mal seizure. The summer was spent recovering and in September he was back in school and actually doing very well.