Merry Christmas and Happy New Years!

Dad had a couple of doctor appointments yesterday which included a CT scan. The CT scan came back good, the swelling has gone down since his hospital visit and the CT was looking more like the MRI he had around Thanksgiving. His blood work is still coming back normal and we are continuing the clinical trial with Disulfrum. He started his second round of chemotherapy today; they doubled his dose from 200 mg to 400 mg however this is normal since he tolerated the last increase so well. They have decided to decrease his steroids (which was increased after his hospital visit) and will be slowing decreasing the dosage over the next couple of weeks.

Dad and I went to a Blues game a few weeks ago and had a great time! We had fairly decent seats and the Blues were able to bring home a win!!!!

We had a very busy Christmas Eve, Dad's extended family came over for Christmas lunch and then we had Christmas dinner with Mom's side of the family. Christmas day we were able to have a breakfast of cinnamon rolls with just the four of us, exchange gifts and then had the traditional meal of clam chowder before I had to leave for work. It was a very calm and relaxing morning!

 

Weekend Getaway

Mom and Dad were able to enjoy a weekend trip to Branson with some family friends over the past weekend and were able to stop and have lunch with Mikayla in Springfield on their way down. Other than some rain, they had a great trip and were able to do everything they had planned. Dad's slowly eating more and more, he said food is starting to taste better. He still drinks a couple Ensure's every day but is eating more than he was a few weeks ago.

Back to Barnes

Yesterday early morning Dad woke up with a headache. He took some Tylenol and put an ice pack on his head and started feeling better and went back to sleep. When he woke up in the morning, he had a headache again and was vomiting. Mom got a hold of one of the oncologists who wanted him to go to the ER and get checked out. At the ER, they did a CT scan which showed more swelling on the brain compared to his last CT scan although I'm not sure which CT scan they compared it to because he hasn't had one in a long time. They decided to transport him by ambulance to Barnes downtown, mainly because all of his doctors are down here and they have a little bit better technology. Dad said the ambulance ride was TERRIBLE, 45 minutes of bouncing around with a full bladder was not his idea of a good time.

They've increased his steroids for now and he seems to be responding well to that. He's feeling much better, has not had any more headaches and his stomach has settled down. We're still in the hospital, just kind of waiting for the doctors to decide what they want to do. Dad hates hospitals and waiting so he's just ready to go home but he has a private room this time around and has been watching war movies all morning.





5:32 pm-- They finally made the decision to discharge Dad. He will stay on the increased dose of steroids until all of his doctors are able to get together and decide what the best course of action will be. They do not want him on steroids for too long, there are only three types of steroids that cross the blood-brain barrier and once he becomes immune to those steroids, there won't be any that would be beneficial. He's still feeling fine and is just ready to be back at home!

Family Photo and Some GOOD News!

I just got off the phone with Mom, she said that her and Dad went out to Applebee's with some friends for dinner and Dad ate his entire club sandwich as well as the mashed potatoes. This is the first meal he's eaten in about a week!!! He said it actually tasted pretty good and it was nice to be able to eat like a normal person. Hopefully his appetite keeps up and he can gain a little weight.

Dad and Mom also picked up Dad's medication for the next round of chemotherapy as well as the clinical trial. His next MRI is January 11th and depending on how that MRI looks, we may or may not have an appointment with Dr. Chicoine a few days after. An appointment would mean there's something on the MRI that concerns the doctors so we're hoping for no appoinment.

Here is the picture of the whole family on Thanksgiving! Dad brought it to my attention that it was never posted, it completely slipped my mind! I love this picture, surprisingly we got such a great looking picture in just one try! This is Dad's side of the family, we're missing quite a few of the cousins and some uncles but this is everyone that was in town!! Love them so much!!

Happy Thanksgiving!!!

Happy Thanksgiving everyone!!!

So here's the update from the doctor's appointments yesterday. We met with a LOT of people, both oncologists, the neurologist's nurse, clinical study coordinator, and a nutritionist, as well as getting blood work done. All of the doctors pretty much said the same thing and while we didn't really receive any great news, we also didn't get any bad news.

Dad had another MRI on Monday the 23rd and on this MRI, the tumor appears slightly larger than it did on the MRI he had after surgery. This can still be inflammation from radiation, or what they call pseudo progression. It is very common to see these types of changes and the doctor told us not to really be concerned at this point because they can't accurately interpret the images. The further out we get from radiation, the better picture they'll be able to get of the tumor. They looked for lesions outside of the radiation field and did not see any, which is a good sign! Fully recovering from radiation is a slow process and Dad could still have side affects from it years from now. This MRI will be the new baseline and he will get MRI's every 6-8 weeks. The next one should hopefully have less inflammation and we'll be able to get a better image of what's actually going on.

Dr. Ansstas, the medical/chemotherapy oncologist will have Dad start his next round of chemotherapy next Thursday, December 3rd. He will be on the same type of chemotherapy (Temodar) but this will be double his previous dosage. This round is not everyday like before, but will be 5 days in a row and then 23 days off. Those 28 days are considered a "round" of chemotherapy and he will do at least 6 rounds.

We also found out that Dad qualifies for a clinical trial! The official title of the project is "A Pharmacodnamic Study of Proteasome Inhibition by Disulfiram in Patients  with Glioblastoma". This trial uses the drug Disulfiram, which is normally used for treating alcoholism, to attempt to destroy the Glioblastoma (GBM) cells. The way Dr. Ansstas explained it is that each cell has a "garbage can" that collects all the cell waste. The Disulfiram has previously shown that it can destroy that garbage can, which will eventually kill the cell because it is so dirty. Disulfiram has been around since the 1960's and has the FDA approval for treating alcoholism. Unfortunately, they couldn't say how effective it is with GBM but it will work along with the chemotherapy and hopefully the combined efficiency will knock the rest of the tumor out. They believe he will only have minimal side effects, such as tiredness, confusion, balance, or weakness. In previous studies, all of these side effects stopped once the Disulfiram was stopped and if the symptoms become too bad, he can withdraw from the study at any time. He will start taking the Disulfiram every day, as well as a copper supplement, with the chemotherapy. The copper will bind with the Disulfiram and help it get where it needs to go.

Dad has lost a decent amount of weight, about 14 pounds in a month. They don't want him to lose any more and want him to at least maintain his current weight. We met with a nutritionist to help figure out what he needs to be eating and to try and get some ideas of things he might like. He no longer has a metal taste in his mouth but says that food just doesn't taste like it's supposed to. Mikayla made some chicken the other night that had some strong spices and he was able to eat a couple of bites and while we were at the doctors, I was eating pistachios and he found that they actually tasted pretty good. This morning my grandparents were over for breakfast and he ate bacon, scrambled eggs, hash browns, and a cinnamon roll and at Thanksgiving lunch he had a few bites of everything and asked for seconds of jello and applesauce which is the most food he's eaten in one day in weeks. The nutritionist brought him a couple bottles of different flavored Ensure drinks to try and he really like the vanilla one. Barnes provides cases of Ensure to patients at no cost, so we were able to get an entire case yesterday so hopefully this will help him maintain his weight. They also want him to continue physical therapy so he doesn't lose any more muscle mass.

As a surprise for my Dad, my cousin Jessi ordered shirts for everyone to wear for Thanksgiving. He had no idea this was planned but it was so awesome to see all of the family (at least the one's that were able to make it this year) and to see all of their support. We were able to take an extended family photo, which we haven't done in AGES and I will post it as soon as it's emailed to me. But for now, here's the ones of our family.

No More Steroids

Dad is completely off the steroids and is starting to feel the affects of radiation and chemotherapy. He's having a hard time eating anything; food has started to have a strong metal taste or just doesn't taste good. He's found that popsicles taste the best, but has been able to eat some tomato soup and PB&J, although after a couple days, he's kind of gotten sick of them. Sweets don't really taste good anymore, he's stopped eating them for now. We're still trying to figure out exactly what he can and can't eat, Slim Fast shakes tasted good but then made his stomach upset. Peanut butter tastes alright when it's eaten with something else but tastes terrible when eaten plain. Everything tastes different for different people so it's going to be trial and error. He seemed to do better while on the steroids, but unfortunately, cannot be on them long term.

Dad is still going to physical therapy a couple of time a week. He has good days and bad days as far as mobility goes; he's supposed to work on putting his body weight on his left side when he gets up to try and strengthen the muscles. He is still getting around on his own with the use of a cane, just moves a little slower than he'd like. He's said he gets tired just walking from the couch to the bathroom.

Mom and Dad went over to the neighbor's house for a Halloween party, but had a special visit from my cousins, Anna and a Swamp Monster!!

Radiation, check!

So life, work, and feeling a little under the weather got in the way of things and I forgot to update the blog but DAD IS DONE WITH RADIATION! His last treatment was this past Monday and in case we're not Facebook friends and you didn't see the video, I'm attempting to post it. He also had an appointment with the radiation oncologist which went well, all the weekly lab results have been looking great!

Dad now has four weeks off chemotherapy and is going to focus on getting some strength back in his left side. The other day his left hand itched so he's slowly getting some feeling back into it. He still uses the cane to get around and the wheelchair for long distances.

He has an appointment with the neurologist November 11th and then an MRI is scheduled for the Monday before Thanksgiving. The following Wednesday he has an appointment with the medical oncologist to get the results of the MRI and then will start another round of chemotherapy sometime after that.

We really appreciate everything everyone has done for us.. The prayers seem to be working, so keep them up!!!!

Almost Done with Radiation!

Dad had his weekly appointment with the radiation oncologist today and they cut back his steroids again so now he is only taking them once a day. Since radiation has started, he's usually lost one or two pounds from week to week and this week he maintained his weight. The doctor also thinks that the leg is getting stronger and seemed impressed with the work Dad has done so far.

His last day of radiation is Monday, the 26th, so just five more trips down to Barnes and then the daily trips will be over! He will also have an MRI sometime within 4-6 weeks after his last radiation treatment.

Last week after one of Dad's treatments, we decided to make a stop at the STL Zoo and walk around. The animals weren't super active but it was a gorgeous day! We packed a lunch and ate by the lake and I was able to get my exercise in by pushing Dad around!

Minor Progress

I haven't posted any updates in a while, mainly because there hasn't been anything to post. Dad only has ten more radiation treatments to complete-- last day is October 26th!

They have decreased his steroids and now he's only taking half of what he was previously taking. He is slowly getting control over his left arm, he can raise it above his head and the feeling is slowly coming back in his hand. Mom said they were outside earlier today and he was able to feel a bug land on his hand. They took the support brace off his ankle two days ago and has been doing great walking since then. They met with the radiation doctor today and everything is looking good, including blood work.

Dad was able to be at his best friend's wedding over the weekend, he was the best man and gave a great speech!

Week Two Updates

As of today, Dad is in the middle of week two of chemotherapy and radiation. He had an appointment with the radiation oncologist on Monday and they decided to temporarily increase his steroid dosage. He's been having a harder time controlling his left foot and his speech was starting to slur a little bit more, and in the past two days of taking the increased dosage, Mom has noticed some improvements with his speech. He also had an MRI yesterday, just to double check on the tumor and make sure that it was not causing his foot to get worse. We got those results today, and while the tumor has grown, it is not the sole reason he's having trouble walking. It's most likely a combination of the tumor growing, the surgery, the radiation, and then possibly a reaction from the radiation.

He's still trying to get to therapy a couple days a week, but with doctors appointments, radiation, and drive time, there's not always enough hours in the day. However, Mom and Dad have been doing the exercises at home and they just got a stationary bike for him to use.

Week One, Check!

Just a quick update- Dad has completed the first week of radiation and chemotherapy. He has been feeling fine, the chemotherapy hasn't made him sick and his appetite has been normal. He's having a little more trouble getting around, however he only had physical therapy on Monday and today instead of the normal three days a week. Radiation had to squeeze him in whenever they had an opening and it conflicted with physical therapy so we had to cancel one appointment. The brain tissue could also be swelling from radiation and that could affect his able to move and control his left side.

He's been using a wheelchair to get from the car to radiation, just because it's such a far walk from the car, through the hospital, and to the radiation office. Other than that he's been using a cane, partially to give him some extra balance and partially to help him practice for if his left leg becomes worse. He's still working hard at therapy and is determined to get more strength and mobility back!

We're Starting Radiation and Chemo!

We finally heard back from the doctors, Dad will start radiation and chemotherapy on Tuesday, September 15, 2015. They've decided to do all of his treatments at Big Barnes in St. Louis because Dr. Ansstas, one of Dad's oncologists, will be able to monitor him much closer than he would if he was getting treatments at the West County Center. They'll be able to do MRI's as needed as well as office visits.

One of the reasons they want to be able to monitor him so closely is because the MRI that was done this past Monday shows that the tumor has grown since surgery. We're not sure exactly how much it's grown, but it is large enough now that he does not qualify for the radiation clinical trial either. One of the doctors mentioned a trial that would start after the first round of chemo/radiation, however we don't have any information on it right now.

More Appointments

Dad had all his appointments this morning which led to a very busy morning. He was fitted for the radiation mask and this pillow that will sit underneath his head while the radiation is given. We still don't have a date set for when radiation will start, we'll hopefully know within a week or so. Dad had another MRI and CT scan done this morning and the doctors will want to look at those results to come up with a game plan for radiation.

We were able to get the first 30 days of Dad's chemotherapy, insurance will only approve so much at a time so we have to wait for them to clear the last two-ish weeks of medication before we will be able to pick it up. But now he is ready to start chemo whenever he starts radiation.

The last time we were at the doctors, Dad agreed to participate in a cognitive study and he did the first round today. This involved remembering a long list of words and having to repeat the words back; word association in which he was given a letter and then had to come up with as many words as he could that started with that letter; and dot to dots with just letters, just numbers, and then letters to numbers such as 1-A-2-B-3-C, etc. He'll do these tests again once radiation and chemo start and then again when they're over. The nurse said Dad did really well and Dad's response to that was "Yeah, and then once I leave, you'll laugh about how horrible I did!"

A HUGE THANK YOU, Minor Update

On behalf of the whole family, we cannot thank our friends and family enough for all the support and encouragement that we have received. Our situation is less than ideal to say the very least, but our support system has helped so much. Meals have been a huge help to Mom and Dad and every time I'm over at their house, the mantel is covered with cards. The other day, I was able to put all the cards into books that now sit out in the living room table. The covers were made from balloons that Dad received the day he came home from the hospital. Visitors are still welcomed, it helps pass the time and break up the day a little bit, plus I think Dad has enjoyed seeing people he doesn't normally see on a regular basis. Huge thank you to all of those who have stopped by to visit, brought meals or snack, have cut the grass, sent cards and prayers, and anything else I may have forgotten!!!

Dad heard back from the doctor, it turns out he is not eligible for the chemotherapy clinical trial. He still will need to decide if he wants to participate in the radiation clinical trial or not. He goes tomorrow morning to have the radiation mask made, pick up his chemotherapy medication, and I'm sure there will be more paperwork and tests that have to be done. We still don't have a start date for anything, hopefully will know more by the end of all the appointments tomorrow.

He's still doing really well, no pain and no seizures. He's moving around pretty well as long as he stays moving, when he sits around too much his balance seems to get a little off. Strength is slowly coming back on the left side since he's been doing physical therapy, although I'm sure it's not nearly as fast as Dad would like it to be!

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.

The Game Plan

Well. We have finally come up with a time line and a game plan.

Dad has decided to continue with this second doctor, Dr. Michael Chicoine. He is one of the best neurosurgeons in the country, has won multiple awards, and he is the consulting neurosurgeon for the St. Louis Rams (at least that's what it said when I googled him). We talked about both options as a family and we just feel that having this more detailed MRI- we're calling it the road map- prior to surgery and then having another MRI during the surgery will give Dad the best possible chance to beat this thing.

The next thing that needed to be done was figure out a time line and get everything scheduled. The pre-surgery MRI is scheduled for the morning of Monday, August 3rd. This is the MRI that will show the doctor the exact location of the tumor and what it is close to. After that Dad has pre-testing with the anesthesiologist in the afternoon, just to go over everything. Between both of these, Dad will be down at the hospital almost all day.

The surgery will be scheduled for Monday, August 10th. Dad could have had it a couple of days sooner, however the doctor would have been going out of town for a conference just hours after surgery and we weren't super comfortable with that. The doctor will be back in town by the 10th and medically, there was no difference versus the two different dates. We're not exactly sure what time the surgery will be or how long it will take, right now we're estimating some where between 3 and 4 hours, although that is just our guess, not what the doctor has told us. We're also assuming that Dad will be in ICU for a day or two before being moved to a regular room.

Dad and Mikayla went to the Cardinal's game last night, they had a lot of fun even though they didn't bring home a win. They even brought home Gus's Pretzels for Mom and I and if you're from the St. Louis area... you know how good those pretzels are!

We really appreciate all the thoughts, prayers, cards, visits, and meals from our family and friends. One of Mom's co-workers is going to be setting up a meal train for us online, once I have more information, I will post it on here.

Dad still isn't really having any pain and has been feeling fine- since he's been great so far, they have lowered the amount of steroids he is taking on a daily basis. He's also gotten a little more dexterity back in his left hand, he can touch his fingers to his thumb a lot faster than he could last week. We're taking this as a great sign!

A Second Opinion

Dad got a second opinion today. I'm not sure what the doctor's name is but I know his office was at Wash U. This doctor said pretty much the same thing that Dr. Martin said as far as a diagnosis is concerned however his approach would be slightly different.

This second doctor (I'll figure out his name eventually) would want to do a more detailed MRI before putting Dad through surgery. This MRI would show the tumor's exact size, what parts of the brain it is near, and if there was anything intertwined inside the tumor. We already know the tumor is close to the part of the brain that controls motor function, this explains the problems Dad has been having with his left hand. After having this MRI done, the doctor would then do the surgery and take as much of the tumor as he could without having any impact on the brain. During the surgery, this doctor would also conduct a second MRI to double check that they have gotten all of the tumor that they can get.

As of now, this is the option that I think Dad is leaning towards. The only disadvantage is that the surgery with the second doctor would be in St. Louis versus being local, however that is not even a big enough issue to really consider it a disadvantage.

As far as a timeline goes with the second doctor, the detailed MRI could be as early as this Thursday, July 30th, with the surgery being next week or the week after. This all depends on the doctor's availability as well as the lab that conducts the MRI.

Mom and Dad have both noticed that Dad is starting to regain a little bit more movement and function in his left hand.. We're hoping the steroids have started to work and have maybe shrunk the tumor a little bit. Regardless, it's nice to have small pieces of good news!

Mikayla is still getting ready for school, this morning her, Dad, and Mom went shopping for a mattress for her new college apartment. She will be moving in roughly a week and a half but plans on making lots of trips home. Dad wants her to continue going to college, especially since she is very close to graduating. I've been saving my time off from work this week so that I can spend time with Dad closer to surgery and post surgery. The four of us had lunch today in between all the errands that they had been running and it's been extremely wonderful getting to spend the mornings before I work with my family. Tonight Mom and Dad went out to eat with another long time family friend and when I talked to Mom on the phone not too long ago, sounded like they were having a wonderful time!

Father's Day 2015... we had a Reese's Peanut Butter Cup ice cream cake.. Delicious!!

The Beginning

So my Dad has recently received some serious medical news. We have decided to start this blog in the hopes that we can keep everyone as updated as possible on his condition, especially once we confirm a diagnoses and determine the best way to treat whatever is going on. We love getting phones calls, texts, etc however as time progresses, it will be difficult to make sure we keep everyone in the loop everyday. As a family, we just thought this would be the easiest way for everyone to receive day to day updates.

For those that don't know, I am Rich's oldest daughter Ashley. I will be updating this blog as much as possible since Mikayla (Rich's youngest daughter) will be in school while the majority of this is occurring and since I don't really know what I'm doing, would be extremely difficult to explain things to Mom. So.. here I am.

On Wednesday, July 22nd, Mom noticed that the left side of Dad's face was drooping a little bit and that he was kind of talking only out of the right side of his mouth. Dad said he felt fine and neither one of them really thought too much about it and they continued their evening like normal. The next day, July 23rd, Mom noticed the same thing happening while Dad was staining the banister in the kitchen. They then decided that he should probably go get checked out so that night they went to the hospital (and if you know my father, he had to finish staining the banister first!) and Dad was still feeling fine. We found out later that Dad's left hand had also begun to lose function and feeling over the past week but he just thought it was carpal tunnel.

I was at work at the time and Mom texted and asked if I was working. I told her I was and her only response was "OK". I ended up calling her and she told me that Dad was in the hospital. At first I thought she meant her dad, my Grandpa, but after clarifying, I knew it was something fairly serious if Dad had gone to the hospital. I debated leaving work versus staying and decided to leave. I picked up my sister at home and we headed to the hospital. The drive from Wentzville to the hospital never felt so long...

Once at the hospital, we learned that they had ran all of the standard tests like blood work, etc. They had also done a CT Scan which had showed a spot on his brain, however it was not detailed enough to tell exactly what it was. Eventually a doctor came in and told us that they were going to admit Dad overnight and that they would do an MRI and have him meet with a neurosurgeon in the morning. Dad absolutely HATES just sitting around so we knew this would be miserable for him to just sit around all night. The nurses on Dad's floor said that his doctor usually made his rounds early in the morning and we could probably expect him to show up around 7 am.

Mom got to the hospital extremely early the next morning in hopes of meeting with the doctor. By the time I got to the hospital around 9am, the doctor still hadn't been in to see him and they had no clue when the MRI would be done. Dad and I played a couple rounds of double solitaire and did countless laps around the floor, just to try and pass the time. Around 10:30 the nurse told us that radiology said they were on their way to come get him for the scan. We waited and waited and waited and they never came. Somewhere between 12 and 12:30, Dad went ahead and ordered lunch. I had to leave around 1:15 to go to work and the still hadn't taken him for his MRI. Finally around 2:30pm they took him down to radiology.

At 4:30ish, Mom said they still hadn't met with the doctor. However, around 5:30pm, I got a phone call from Mom, asking me to come home and that Dad was going to need surgery but didn't want to say anything more over the phone. After making arrangements to leave work, I headed to Mom and Dad's house. 

Dad's neurosurgeon, Dr. Martin, believes there is a tumor approximately 2-2.5 inches in size, fairly deep inside his brain. There is no way to know for sure how long it has been there, but he is guessing around 3 or 4 months. Up until recently, Dad has had no signs or symptoms, no pain or headaches. Dr. Martin says that he has been wrong before about these things and it's a possibility that he's wrong and it is only an infection, however they won't know until after surgery. Dr. Martin wants to do surgery as soon as possible, possibly as early as this Friday, July 31st. He would remove around 85% of the tumor and then after the surgery, they would biopsy the tumor and determine if it was cancerous. If that is the case, Dad would go through radiation and chemotherapy to get rid of everything that the surgery did not remove. Post surgery, he would also have physical and occupational therapy. Absolute worse case scenario, Dad would have 14 months left to live.

Dad is getting a second opinion and will be seeing a doctor at Wash U tomorrow afternoon, 7/28. Whatever future action he decides to take will be made after that doctor's visit.

Dad is no longer allowed to drive or work but he has still been doing small projects around the house. While I was over there yesterday for a family BBQ, he was working on touching up the paint in the bathroom and hung some pictures and shelves. He will be retiring from work and Mom has taken a leave of absence from her work in order to spend time with Dad and make sure he gets where he needs to be. (***Edit: Dad is going temporarily on disability leave until we know for sure what is going on and what the long term picture is. He is not retiring as of right now.***)

I think I included everything that I know as of now.. I will update as often as I can. All we can do at this point is pray and trust that God has a plan for all of this. If anyone has any questions, feel free to leave a comment (I think this blog will allow comments...? I'm still learning) or contact any of us via phone, text, Facebook, email, whatever. Like I said before, we don't want this to discourage any other communication, all the calls that we have gotten so far have been extremely supportive and encouraging and I believe that as time goes on, we will need more and more of that.