Oncology Appointments and Physical Therapy

 Dad had the appointments with the two separate oncologists today. It ended up being a longer day than we thought it would be because the first doctor "was stuck in a meeting" and was running almost two hours behind.

The first meeting was with the radiation oncologist whose name I cannot think of right now. None of us were familiar with the treatment so the doctor explained it to us. The way radiation works is like a spotlight on an actor on a stage. They will put Dad in a custom mask to prevent his head from moving and the radiation will target the remaining cancer and tumor cells. He will go for treatments five days a week for six weeks and treatments will be at Big Barnes or in West County, it will just depend on what happens with his clinical trials. They won't start radiation right away, they like to wait at least 4-8 weeks post surgery to begin and right now we are only 17 days post surgery. There will be another CT Scan and an MRI done to give them that "road map" to where they need to target the radiation, as well as making the mask. There are possible side effects including headaches, swelling of the brain, short term memory loss, temporary paralysis on the left side, hair loss at the radiation site, and Dad might want to sleep more. Radiation will probably aggravate the brain tissue again which is what would cause some of these side effects. How much physical therapy he does will depend on how he is feeling. The radiation doctor said he has no problem with him doing physical therapy, however usually therapists don't allow radiation/chemo patients to do very much therapy just because they are more tired that normal. For now though, Dad will do as much physical therapy as he can.

The clinical trial that this doctor told us about is one that tests a different type of radiation. The "standard care" with radiation is a photon therapy, as explained above. This clinical trial tests a proton therapy which gives an even more direct type of radiation than the standard care. I know there is more to it medically but I haven't read all the paperwork yet so I don't have any more details. If Dad decides to do this trial, he is randomly selected to be in either the photon (standard) or proton (experimental) group. We do not get a say in which group he is in, but this is not a blind study so once his group is selected, we will know which one he is doing. This study will be done at Big Barnes and since they are the only hospital with the proton machine within a 500 mile radius, it cannot be done anywhere else. We are almost positive that he will qualify for this trial, however there is a central pathologist that will conduct their own tests to confirm it is a grade four Glioblastoma tumor and also provide consistency within the experiment.

 The second doctor we met with was the medical and chemotherapy oncologist. This doctor also began the appointment by explaining the chemotherapy treatment. The day that radiation starts will be the first day of chemotherapy. Chemotherapy will be a pill that he takes everyday in the morning for six weeks, which is the same length of radiation. After the first six weeks, he will take a break for four weeks to rest and recover. When that four weeks is up, he will do 6-12 rounds of a 28 day cycle with a stronger dose. The first five days of the 28 day cycle, he will have the medicine to take and then for the rest of the 23 days, he doesn't take anything. This cycle repeats six to twelve times, depending on how he's responding to it. They're anticipating on him having minimal side effects, especially with Dad being so young and in otherwise good health. There might be some nausea, which he will have medication to help prevent that, we will also have to monitor him to make sure that he doesn't run a fever. If he starts running a fever, he would most likely have to go to the emergency room for IV antibiotics because the chemotherapy can cause his white blood count to drop which makes him more susceptible to infections and infections at that point could be very dangerous for him. He will have blood drawn weekly to monitor his white cell counts. Physical therapy would also depend on how he feels, but the doctor did say that exercise would give him more energy.

To explain how the chemotherapy clinical trial would work, you have to understand a little bit about chemotherapy and the science behind it. When someone is on chemotherapy, that medicine attacks the DNA of the cancer cells so the cancerous cell cannot divide and multiple. However, the body naturally makes an enzyme called MGMT and that enzyme makes it more difficult for the chemotherapy to destroy the DNA of the cells it needs to. In some people, the MGMT enzyme is active and in some people, it is not. If the MGMT marker is not active, it is easier for the chemotherapy to get rid of the DNA. In this clinical trial, Dad would take an additional medication that would work alongside the chemotherapy to kill the DNA. In order to qualify for this trial, his MGMT has to be non-active which happens in about 40% of people. Pathology ran this test after surgery, however it takes a while for the results to come back but we should be getting them any day now. If this test comes back and he would qualify for this trial, he would have to chose between this trial and the radiation one, he cannot participate in both trials. This trial would not begin in the first four weeks of chemotherapy, it would start once he begins the 28 day cycles. He would have medication to take the first seven days of the cycle and then not take anything for the remaining 21 days.

Both of the trials take weeks to get all the paperwork and qualifying tests done, so Dad has signed all the paperwork for both trials just to get things moving. Once we know if he qualifies for the MGMT study, he will have to continue with one study and withdraw from the other study. Neither study is contractually binding and he can withdraw from either study at any time. As far as I know, we are not leaning towards one trial over the other, we are still doing our research and honestly, still processing everything. It was information overload yesterday, on top of being a long day.

Dad started physical therapy last week and so far is doing really well! They have him working on different exercises to help with balance, walking, and regaining strength in his left arm and hand. I can already tell a difference, yesterday he had the most control and strength on the left side that I've seen since his surgery.

The Pathology Results

Dad has his follow up appointment with Dr. Chicoine yesterday. The purpose of this appointment was to find out the results from the biopsy and to figure out how to proceed from here.

The biopsy indicated that the tumor was cancerous, Stage Four, and it is a Glioblastoma tumor like they originally had thought. I still refuse to Google anything but from what the doctor said, it's a very stubborn type of tumor and will more than likely come back, even with treatments. The good news is, both Dad and the doctor are prepared to beat it, and there has been no mention of "only ___ months/years" or anything like that.

Dad starts physical and occupational therapy tomorrow and will continue that for a while. We don't know yet how long he'll have to go for or how many days a week. Radiation will start somewhere around the end of August or the beginning of September, they usually wait three to four weeks after surgery to begin. Radiation will be five days a week for six weeks and chemotherapy will be done in a pill form. They are considering the pill "Temodar" but ultimately it will be up to the oncologists. Dad will have two different oncologists, one is a medical oncologist that handles the chemotherapy side of things and the other is a radiation oncologist that will over see the radiation. Dad will have appointment(s) with both of them before treatments start.

It is also looking like Dad will possibly be a good candidate for clinical trials, however we don't know much more other than that.

Keep the prayers coming.

Dad cleaning the floors this morning =)

First Weekend at Home

Dad is still doing great! Not much has changed, he's having no pain and no problems since he's been home. He's just been taking things slow and easy, not doing too much at one time... he's been watching lots of TV and playing his computer game. We tried playing dominoes earlier... took us a while to remember the rules but we still had fun!

He's Going Home!

11:45 am- Just a quick update because I'm doing this from my phone and not my computer.. Dad gets to come home today!!!!!! We're waiting on paperwork and medicine but we should be heading home in the next few hours!

3:29 pm- Well, Dad is finally home, cleaned up, and ready for visitors! He made his goal of getting home on Mom's birthday. He's going to have some out patient therapy to help work on his hand and he has a follow up appointment with Dr. Chicoine next Wednesday. By then we should have the results from all the tests Pathology ran on the tumor and know what the next steps are. For now he is resting and recovering, working on walking (not that he's having many problems, just getting used to it again after being in bed for so long), and enjoying being home and in regular clothes! 

Visitors are more than welcome now that he is home and we appreciate everything that everyone has done for us so far. From checking on my house and getting my mail to mowing Mom and Dad's grass, our family and friends have been awesome and we cannot thank you all enough for the help and support you've given us.

The neighborhood girls made Dad a welcome home sign and put it in the front yard, a nice surprise for Dad when he got home!!!

Post Surgery, Day 2

11:31 am- Dad finally went for his MRI around 7 pm last night.. Dr. Chicoine came in this morning before we got here and said that everything looked good, just like they expected it to. He's still in ICU but all the nurses have told him that he doesn't really need to be here, believe they are just waiting for a room to open up on the regular neurosurgery floor. Dad was told that they are going to try and get him up and moving out of bed a little bit more today, but so far that hasn't happened. He's still moving around the best he can in bed, but is wanting to get up and walk. They did take the staples out this morning and took the bandage off the incision and everything is looking good. Dad looks more rested this morning than he did yesterday, although he said it's hard to sleep between his blood pressure cuff going off, the pumps they make him wear on his legs, and people coming in and out of his room. He's on antibiotics and blood thinners for now but still hasn't been in any pain and hasn't requested any pain medicine. We have no idea when they will let him go home or when we'll hear back on the results of the biopsy and further testing they were planning on doing. We're operating on hospital time and while the care has been really good, we're not exactly moving things along as fast as Dad would like. His appetite has still been normal, he's currently eating a cheeseburger, mashed potatoes, and lemonade. Last night they brought him some orange sherbet-- his favorite ice cream!

2:57 pm- The nurse walked two laps with Dad around the ICU floor so he was able to get up and move a little bit. Therapy hasn't been around yet but the nurse said she hasn't seen them all day. Still waiting for a bed to open up but the nurse said if he has to keep waiting around for a bed, they could discharge him straight from ICU- he got a little excited at the thought of that! Dad and I have been playing Double Solitaire and he's beaten me a few times. Nurse said if therapy doesn't come around this afternoon, she would walk with him before dinner.

4:58 pm- Dad is finally in a regular room!!! Woo!!!

6:20 pm- Dr. Chicoine just came in, said everything is looking really good and there is a very good chance that Dad could go home tomorrow.. tomorrow is Mom's birthday and Dad was really wanting to be home by then. He needs to meet with physical therapy and get clearance from them before they will discharge but for the most part Dad isn't having any trouble. He's a little unsteady when he first gets up but also has been in bed for the past two days. If he goes home tomorrow, he'll have a follow up appointment with Dr. Chicoine next week and they'll hopefully know the final results of all the pathology tests. It's not 100% certain yet, but if Dad needs radiation and/or chemotherapy, that would start in about a month. He can move his left hand now just a little bit, he's got a football stress ball that he's been playing with. He's soo much happier being on this new floor, he's already gotten out of bed a couple of times to use the restroom and now he can actually see the view from outside his window.

Day 1 Post Surgery

11:30 am- Dad did AMAZING over night. No seizures, no pain, no problems at all. I spoke to his ICU nurse last night around 10:30 pm and at that point he had taken a nap and was sitting up watching TV. This morning he had a breakfast of bacon, eggs, and pancakes and right now he is eating lunch. They've un-hooked him from everything except a blood pressure cuff and the heart rate/oxygen monitor. He will be moved out of ICU sometime today and will have an MRI done later this afternoon or this evening. They checked his legs this morning for blood clots and found no problems with that. He's been sitting in a chair off and on today and is going to start walking around whenever the nurses are ready for him to try but he's still moving his arms and legs around in bed. He's determined to get home as soon as he can!

5:15 pm- Occupational therapy was in earlier this afternoon and Dad was able to get up and walk around a little bit with them. Other than that, nothing else has happened. Dad and I have both been napping off and on. We're still in ICU and have no idea when he'll be moved. Also still waiting on the MRI, we were told that they do all the out-patient tests before they do the in-patient ones. Dad is still in no pain, he's been eating and drinking just like normal.

11:04 pm- Mom called ICU around 10 pm tonight and found out that Dad finally had his MRI today and that he was sitting in his room watching the Cardinals game. There's a chance that he could be moved to his new room during the night so we'll call in the morning before we go up there and see where he's at. Everything seems to be going well so far, his "super goal" (his words) was to be home by Wednesday which is highly doubtful and if not then, he was hoping by Thursday. Think it will depend on how quickly he gets moved to his new room, he's not really supposed to get up and walk around much while in ICU, hopefully in the new room he'll be able to get up and walk a lot more.

Today's the Day!

Well, surgery day is finally here! Think everyone got a couple of hours of sleep last night, which was awesome considering we had to be at the hospital at 5:30 this morning. Good news is the hospital has wifi, bad news is the cell phone reception is terrible.. so if we don't respond to a text, sorry! But I'll be able to update here as often as we know anything. We should get updates every two hours that Dad is in surgery, they have a pager system here that will send updates to us.

It's now 6:39 am and Dad is hooked up to the heart machines, has his IV, and we've done all the pre-surgery things. We're currently waiting for the anesthesia team to come in as well as the surgical team. Dad's particular surgery waiting wing doesn't seem too busy so hopefully the doctor will be running on time.

7:45 am- They took Dad back for surgery. We met a lot of the doctors and nurses that are on his surgical team (we're guessing his team is probably close to 20 people or more!) and they were all extremely nice and explained the basic idea of what's going to happen. It will probably be at least another hour before they start the actual surgery, as there are multiple stages to this procedure. First they are going to knock him out while they get him hooked up to everything, he's going to have a skull block which will numb the superficial nerves in the skull. They inject medicine above his eyebrows, near his ears, and at the base of the skull to numb everything. Once that is done, they'll remove a piece of his skull and use a computer to map out the exact path they will take. When they think they are ready to begin the actual surgery, they will wake him up but he'll still be in a partially sedated state. Dr. Chicoine wants him able to answer questions and move different parts of his body. After they have removed everything they can safely remove, they'll put him under full sedation with a breathing tube and do an MRI. After the MRI they'll close him back up and he'll be off to the recovery unit for a while before being moved to ICU.

9:15 am- We just got a call from a nurse on the surgery team. They started the actual surgery about 10 minutes ago and everything is going good so far.

11:00 am- Everything is still going great! Dad is responding to everything appropriately, answering questions, wiggling his toes, etc.

1:03 pm- Dad is currently in the MRI, it should take an hour or so. Dr. Chicoine will review it and determine if they can take any more of the tumor out or if they've taken as much as they safely can. Will hopefully only be a few more hours before Dad will be back in recovery. The staff is doing a great job of keeping us updated, almost like clockwork, about every two hours.

2:47 pm- Dr. Chicoine just came out to talk to us. They have finished the surgery and the MRI. They were able to remove most of the tumor however there is still a thin lining that was too close to the motor skills part of the brain to safely remove. Dad fought the initial anesthesia so they had to use a stronger medicine than originally intended, which meant he ended up needing a breathing tube. Once they finally had him under, they made the incision and were able to look at the brain lining. The tumor was not super obvious but with the computer programs and technology they had access to, they were able to locate it's exact location. Once they were ready to start removing it, they woke Dad up and Dr. Chicoine said he did really well during all the motor tests and was extremely cooperative and did everything they asked him to. At some point, he began to have difficulty moving his left hand so that's when they decided to do the MRI and quit operating. During the meeting with the doctor, the computer wasn't cooperating so we weren't able to see the images but they removed everything that was possible. He's going to be sore from the head brace they put him in and also has stitches and screws in his skull to hold the piece of bone in place that they had to cut away. They are currently working on waking him up and we'll hopefully be able to see him in the next 45 minutes, once he gets moved to recovery. After an hour or two in recovery, he'll be moved to ICU.

We do know a little bit more about the tumor now. It was a little bit bigger than a half dollar and Dr. Chicoine is almost positive that its a "Glioblastoma Multiforme" or "GMB-Grade 4 Glioma". It is a very aggressive type of tumor and Dad will more than likely have radiation and chemotherapy once he has recovered from this surgery. While he's healing, he will probably get worse before he will get better, and there's a possibility of temporary or permanent paralysis and seizures. The tumor will be biopsied and Pathology will run tests on it, they will also determine if Dad would be eligible for any clinical testing. This type of tumor obviously cannot be cured with surgery alone and over the next week we'll figure out what the best next step is from here.

3:10 pm- We'll be able to go up and see Dad around 4:30 pm. Not sure if he'll be in recovery or the ICU.

4:25 pm- We're currently waiting in the ICU waiting room for them to bring Dad up- we beat him up to his room! We all finally have service now so we're happy about that, ha!

We have the meal train set up, if anyone feels up to making meals, let me know and I can send you the link. It has our home address on it and we're not comfortable posting the direct link online since this is a public blog, but I will be more than happy to send it privately to anyone who asks. Meals have been a huge help the last couple of weeks, cannot thank our family and friends enough.

9:30 pm- Sorry for such a long delay in updates, once we were back in ICU with Dad, I just wanted to focus on him and spending time with him. Dad was in a great mood post surgery, he was cracking jokes just like normal. His left side is a little bit worse than it has been in the past, but that is considered completely normal. The brain just needs time to rest after going through surgery. Dad was pretty groggy but said that he remembers just about everything. We told him a couple of times that his left hand will probably get worse before it gets better and hopefully he'll remember that- but we'll remind him tomorrow as well. He told us that during surgery, they asked him to count backwards from 100 by 7's (100, 93, 86, etc) and he amazed the surgery team by doing so! They said that they ask people to do that expecting them to not be able to do it and they were all surprised that he could do it. Up in ICU they wouldn't let him get out of bed but he was moving his arms, hands, fingers, and toes as much as he could- he was even doing leg lifts while laying in bed. They actually let him have a real meal, not crackers and jello like he was expecting. By the time we left he was eating beef stew and carrots and was eating by himself and not making a mess. After speaking with the doctor earlier today, think we were all a little worried about what to expect but seeing him act like he always has helped ease our minds a lot.

I don't know when he'll be ready for visitors, ICU only allows two people in at a time and they don't allow any visitors from 6am-8am and then again from 6pm-8pm. Once he gets moved to a regular room, he'll probably have a roommate and visiting hours are from 11am-9pm. Weird, right? As long as he doesn't have any complications or seizures, we're hoping they'll move him to a regular room by tomorrow evening and then maybe even discharge by Thursday (Mom's birthday- wouldn't that be an awesome gift?) or Friday. Dad is determined to do whatever it takes to get out of the hospital and get home. I know once he is home, he would love to see anyone that wants to stop by.

We're exhausted, I've been up for about 17 hours now.. Today went about as well as we could have hoped. We're so blessed to have been able to have this team of doctors and specialists, along with our amazing support group. We've made it past this big obstacle and I'm sure there will be more in the future but we're just taking it all one day at a time.

Another Pre-Surgery Appointment

Well, we thought that Dad wouldn't have another appointment with the doctor before his surgery, however Dad's doctor called yesterday and said that he wanted to see him today. We were a little bit worried about what the doctor was going to say as Dad wasn't really expecting to have another appointment.

From what we know, the tumor hasn't changed in the last couple of weeks... which is good that it hasn't gotten bigger but also hasn't gotten smaller, least from what we can tell. The doctor doesn't think that Dad's speech will be affected post surgery and the only real concerns are his left side motor skills and the drooping of the face-the same symptoms that Dad is currently having. There's a chance of both temporary paralysis and permanent paralysis, just depends on what happens during surgery.

As far as surgery goes, we have to be there very early in the morning and it is scheduled to start at 7:30 am and is expected to last at least four hours, could last six, eight, ten hours. We obviously don't want the doctor to rush through it but it's nice to at least have some type of idea of how long it might last. It's going to be a very, very long day for us all. Dad has consented to be partially woken up during the surgery to check his motor skills, however this will only be done if the doctor feels it would be beneficial. If Dr. Chicoine thinks it would be too risky or dangerous to wake Dad up, he won't do it. But this will also help the doctor in determining how much of the tumor can be safely taken out. We still don't know how long Dad will be in the hospital after, could be four days, it could be a week.

While none of this is really good news, it certainly isn't bad and it's comforting knowing a little bit more about what the plan is and what we can expect. We encourage the texts and calls and don't want anyone to feel as though they are "bothering us"... especially on the day of surgery, it will be a lot of waiting and sitting around, hearing from family and friends would be an excellent distraction.

Tonight we had a great night as a family, I cooked one of Dad's favorite meals for everyone (Chicken Wonton "Tacos", except I make them in muffin tins) and played a couple of board games. We haven't played some of these games in a long time and it's been a lot of fun!

For those that didn't see this picture on Facebook, I thought I'd post it on here. The other day I was going through old pictures and found this one of Mom and Dad, taken September 1985, about a year after they started dating. I hadn't seen it before and I absolutely love it.

Just a Quick Update

Nothing has changed much over the past couple of days. Dad had his second MRI today and the pre-meeting with the anesthesiologist. Everything went fine, we don't know what the MRI showed but Mom thought we probably wouldn't know much more from it. We're assuming nothing has changed since they haven't changed any of Dad's medication and the surgery is still set for the 10th of August. Dad has still been feeling fine, isn't having any pain or any other problems that you'd expect with a brain tumor so we're hoping that maybe since the swelling has gone down, maybe things aren't quite as bad as we first initially thought.