It's Official!

Not only is it official, but he's started!  Jared had another MRI on Wed, and we met with the doctor right after.  He said that after the appointment he would fax all the info to Texas to get the final okay to be a part of the trial.  At that point they were pretty sure that he would qualify to be part of the trial, but because it's only in Phase II, they have to have a control group (the group that gets the standard treatment) and a test group (the group that gets the new drug) to be able to compare the results.  On Wed we were told that the first 20 people on the trial were given a 50/50 chance of getting the new drug, and after that it would be a randomized selection.  Jared was number 24.  So we were worried he wouldn't be selected to get the new drug.  Well, we received word yesterday that he did!  And he started treatment today!!

To explain the trial a little better, it's being conducted by MD Anderson Cancer Center in Texas, and there are only four locations in the U.S. that are doing it.  And Jared's doctor is the one overseeing it at Huntsman.  So we feel very fortunate that it basically fell in our laps!  The treatment is this:  Avastin plus the new drug Vorinistat.  Avastin is a drug that is commonly used in Glioblastoma.  They don't use it until after they've already tried chemo/radiation because it's a "short-term fix." It constricts blood vessels, preventing or slowing tumor growth, but it doesn't do much to control the active tumor cells, so those eventually take over.  But with the trial, they are adding vorinistat, a drug that has proven to control cancer cell activity in other cancers.  So in theory, the two together could be effective.  We knew we had a MUCH better chance at longer survival with the new trial.  So he goes to get Avastin through an IV every 14 days, and the days he gets the infusion he starts taking Vorinistat pills for 6 days.

As a side note, my mom has a friend who was diagnosed with a terminal cancer, in fact hers was spreading so rapidly that doctors only gave her 3 months to live.  She did a clinical trial, was one of two in the whole group that responded to the trial, and she's still around 10 yrs later.  So whether this is a "cure" or not, we just need him to be the ONE that responds!!

The P.A. asked us the other day at the appointment how our kids are doing, and if we've discussed the "situation" with them.  The truth is, we don't see the point right now.  The older two know that the cancer is back.  But I don't think they need to know more than that right now.  If Jared doesn't respond to the new treatment, THEN we'll probably sit down and discuss the situation with them.  Jace has been acting up lately, and I wonder if he's stressed.

Now to try to summarize the past month, Jared has been doing okay, not great.  His speech is a little better, but still really frustrating.  It's been a hard month because we know the swelling in his brain is still horrible, and that it won't get better until the Avastin kicks in!  And we also knew we had to wait four weeks recovery time to start the Avastin!  Cosmetically, his head looks GREAT!  He doesn't have the big dip he had before and the scar is healing up the best this time.  But there are some new issues.  The one that worries me the most is that he keeps having these weird lapses where I can tell something is wrong and I'll ask him questions and he just looks at me with a glazed look, so I don't know if he's about to fall or black out or start seizing.  They only last a few seconds - the only way to describe it is that it seems like his brain just turns off.  He did actually black out for the first time about a week ago.  We're lucky that he didn't fall hard.  I heard the thump, but when I found him he was on the floor crouched over and didn't fall very hard.  He also gets really dizzy, especially when he stands up after sitting for a long time.  I keep telling him to take his time, that we can all wait as long as he needs, but he always gets impatient and starts walking, which usually results in a near-disaster.  So my stress level has risen dramatically.  I've been seriously considering going on Zoloft the past couple months to calm my anxiety, at least until things start to settle down.  I feel like an absolute stress-case!  We think the "brain turning off" episodes are little seizures.  He's been trying to get off topamax, of course, so that's probably part of the issue.  The doctor is going to put him on a different anti-seizure drug to see if he likes it better.  The doctor thinks it's probably due to swelling as well.  So we are excited to have the treatments starting!  Just one step closer to our lives becoming more normal...

 

Getting the Avastin infusion

 

Even miracles take a little time...

We met with Dr. Colman early this morning to discuss treatment options.  I went to the appointment a little nervous, because I was afraid he was going to put us back on the radiation and temodar (chemo) plan, and my thoughts are if it didn't work the first time, why do it again?

 

I was kind of relieved to hear a new plan, but one I think we're still going to have to think about and really feel good about before proceeding.  He suggested putting him on Avastin.  Avastin restricts the blood vessels, which will help control the swelling, but will also prevent tumor growth.  But he mentioned that the active cancer cells will not be controlled by Avastin, so they are doing a trial right now that is in Stage II (meaning they've figured out the right dose to give, but don't have enough information to give statistics or results) where they add another drug that has been used in other cancers, that they are hoping to control those active cancer cells.  They've already submitted Jared's paperwork for pre-approval, but we won't know for a little bit if he is officially approved or not.  The fact that he's on blood thinners may cause a problem. 

 

He did mention that radiation could be an option down the road if the Avastin isn't working.

 

We're not new to Avastin.  Jared's mom was on Avastin, and it didn't seem to do much for her, and I might be completely wrong, but Avastin seemed to be a last resort, short-term fix.  But the doctor seemed to think this could "buy" several months or longer. 

 

My thoughts are that we need to try anything and everything, because Jared just might be the ONE person that responds to a certain treatment that others didn't respond to.  Like I said before, the only option I wasn't thrilled about was going back to chemo/radiation, because it didn't work.  We've got to try something new.

 

I think we're both pretty comfortable with this plan.  He will go in 3 times/month, 2 of them will be IV infusions of the Avastin.  But Colman said they wouldn't start that until 4 weeks after his surgery.  So I have time to explore other options.  I did explore a couple months ago, and there didn't seem to be much, but something new may have come up.

 

When we got home, it was still pretty early and I was REALLY tired, (Averie for some reason has been getting up 3-4 times every night!  I'm starting to consider the Benadryl option so I don't lose my mind!!!), so I tried to put on something for the kids to watch so I could attempt a short nap.  Cinderella was on TV, and it seemed to hold their attention, so I gave it a try.

 

I think I slept about 30 seconds before Averie woke me up, so I was trying to get back to sleep, and for some reason I heard what was being said on the movie (probably the only 30 seconds I actually paid attention to the entire time):

 

Cinderella (crying to herself):  "I can't believe. Not anymore. There's nothing left to believe in... NOTHING!"  Then Fairy Godmother appears:  "Nothing, my dear?  Now you don't really mean that!"  And Cinderella responds, "Oh, but I do!"  And Fairy Godmother says, "If you'd lost all your faith, I couldn't be here!  Dry those tears...  But we have to hurry, because even MIRACLES take a little time."

I've always believed that Jared's mom couldn't be too far away in all of this.  I know she's probably his biggest support and cheerleader right now.  But I've had some experiences just recently that have made me think that my grandma (my dad's mom) is also very aware of our situation, and that she, too, is close by.  And both of these women had exceptional faith.  I can even picture my grandma putting her arm around me and saying the exact words to me that Fairy Godmother used.

 

I don't believe this dumb little experience today was just a dumb experience.  I think it was another confirmation to me that we are not alone in all of this.  We probably have even more than two "Fairy Godmothers" helping us along.  But even more important, I DO believe that "even miracles take a little time!"

Pathology Report

Today was actually going quite well until the doctor came in the room and ruined it.  I should've guessed he had bad news because he seemed pretty serious.  The pathology report came back and indicated that there was some cancer in the sample that was removed.  He said that of the tissue they removed from the brain, about 70% was dead tissue from radiation, and 30% was cancer tissue.  So that explains why the first little sample indicated that it was just dead tissue.  They must've tested the wrong area during surgery.  I don't really understand the 70/30 thing, either, because his tumor was originally encapsulated, and back in January it looked more like a solid mass.  Does this mean it's no longer solid, and it's spreading like wild fire?  I guess that would've been a good question to ask, but I don't know if I want to know the answer.

 

For some reason the bad news was easier to swallow the second time around (versus hearing the same thing two weeks ago).  I don't know if I'm just still in denial, if it just hasn't processed yet, or if I'm just DONE with the bad news.  Probably all of the above.  But it's weird how your day can start off one way, and end so differently.

 

We meet with the oncologist on Tues to discuss our options.  I think chemo is probably a "for sure," and radiation might possibly be an option.  I'm just sick of doing all of this stuff that isn't working, especially when they make him feel horrible and don't seem to work.  But I don't know that we have any other options.  The neurosurgeon did mention some trial stuff.  I guess we'll see what they have to say on Tuesday.  No reason to speculate before then.

 

On the brighter side, Jared was able to come home today, a short TWO days after brain surgery!  He still has some motor skill issues, as well as the speech issues, but I'm not going to push much this soon after surgery.  I did get some exercises from the specialists to practice with him in a couple days.  For his motor skills he gets to play with putty and screw bolts on screws, things like that.  He tried the putty today and said it was way too hard.  So we'll try again in a couple days.  I do remember this is a SLOW process, unfortunately!  As much as we want it back today, it's just not going to happen.

 

Jared and I have always felt at peace that he has at least a few good years ahead of him.  I don't really know how to explain or even to accept all of this going so horribly so quickly.  I've heard of other situations where the cancer kept coming back and coming back, and the person still somehow overcame it.  I don't know how those scenarios equate with this type of brain cancer.  I don't know that it's even possible, because the brain can only take so much surgery and so much tampering.  Yet for some crazy reason, we both still have hope.  It's scary to be in a position of feeling like one day I will either be made a complete fool for having so much hope, or feeling like I will have an incredible story to share!  I would so much prefer to have a boring life with no drama and no story to share.

Surgery #4

Surgery was scheduled for 7:30am on April 30th (yesterday).  We had to be to the hospital at 5:45, so we had to leave the house at about 5:00am.  Neither one of us slept well the night before, and both of us remembered having really weird dreams.  It seems like that always happens when you're anxious.  Jared was starting to get really nervous the day before surgery, I've actually been unbelievably calm lately, even while he was in surgery. 

 

We got to ask a few more questions before surgery.  One of our definite concerns was the effect that this surgery would have on his right side.  The doctor sounded like he wasn't concerned at all about actual paralysis, but just weakening of his side that might require physical rehab.  Jared told me before surgery that if he woke up and heard the words "physical rehab," he just might cry!  We both mentioned that even walking through the rehab center would depress us.  That really was a horrible couple of weeks! 

 

They told me that the first hour or so of surgery would actually just be the "mapping" process.  They said sometimes it gets complicated and takes longer.  So I was watching the clock after they took him away to gauge when they were actually cutting.  I got an update about two hours later.  They said that he was officially under the microscope and that it would probably be another couple hours.  I got another update about an hour later saying that they were getting ready to close up, and that the doctor would be out to talk to me in about 45 minutes.

 

At about 11:45 the doctor finally came out to see me.  He said that everything went well, that the initial biopsy was indicating that it was just dead tissue, but that he wouldn't be able to confirm that for certain until he got the official pathology results back in a few days.  He told me that Jared still wasn't moving his right side, but he thought he was still too groggy from the anesthesia.  He also said that he had placed a piece of acrylic (he compared it to boat acrylic) in the top of his head to give a nice, smooth shape and to prevent the sags and bumps that he had prior to surgery.  He told me that he thought I would like Jared's "new head."  (I had joked with him before surgery that we wouldn't mind him working some of his plastic surgery magic if he felt inclined!)  That was actually good news as well.  Jared never talks about the shape of his head, but I know it bothered him.

 

I didn't get to see Jared until about 1:00pm when he was finally set up in the NCCU (neuro critical care unit).  One of the first things I asked him is if he could move his right side, and he could, so that was a big relief!  He was really tired the first little while.  He also complained about being in a lot of pain, but a cold pack seemed to help quite a bit.  Overall, things seemed to go pretty well.

Couple hours after surgery
Not looking too bad, actually!

If you notice the purple circles everywhere,
he had stickers placed there to help the
doctors "map" his brain to know where to cut.

I went home that evening to see the kids before they went to bed.  Brynlee had spent the afternoon making a poster for Jared.  She made sure to write "Jace put no thought into it.  No work by him!" 

I went up to the hospital again today.  They moved him out of critical care to the neuro acute care unit.  He has been walking around today, which is good.  His pain level is better today.  He didn't sleep much last night, so he tried all day to sleep, but his medicines keep him awake.  He is having problems with his fine motor skills on his right side.  He can't move individual fingers, and he can't point and flex his foot or move his toes.  That doesn't surprise me much.  Those were the last things to come back last time, so I would expect with a lot of swelling that he might have problems with those right now.  I think all of that will come back with work.  But it's a little scary thinking that prior to this surgery, he still wasn't 100% in those areas, in fact I would maybe say 60-70%.  So I'm hoping this surgery won't make those even worse.

 

The biggest concern right now is his speech.  The speech therapy lady calls it "word finding."  I knew he was having a little trouble yesterday, but figured he was groggy.  Today he's really getting frustrated.  He says he knows what he wants to say but it comes out wrong.  He can give simple answers to questions, but if you have him try to explain something, he can't do it.  He gets stuck on a word and gets really frustrated and gives up.  And I've also noticed that sometimes when he's frustrated he will keep repeating himself.  For example, the nurse had mentioned hearing something with his heart (something the nurse said was normal), and after the nurse left, I asked Jared what the nurse was talking about with hearing something in his heart, and he said, "I didn't hear anything.  I didn't hear anything.  I didn't hear anything.  He didn't hear anything."  (I think he was trying to say "he" the whole time, but couldn't get it out.  Even still, the way he answered my question didn't make much sense to me and I just dropped it because I could see he was frustrated.)  So he will probably require some speech therapy.  I don't know how much at this point.  I do remember him having issues with word finding from his first surgery, but this time seems quite a bit worse. 

 

I knew there was a reason I was dreading this dumb surgery.  I think we both remembered how bad the recovery was, but I must have forgotten all of these little things that seem to take forever to get back to an acceptable state.  And I don't say normal state, because none of these things have ever gone back to the way he was before all of this.  So now we're stuck with acceptable.  As long as he his personality and humor don't change, I will be able to deal with the rest of this. (Knock on wood!)

Gearing Up

The past few days haven't been nearly as bad.  I don't know if the steroid is starting to offer some relief, but Jared has been feeling quite a bit better.  The headaches are pretty much gone, he went to work Thursday for most of the day, Friday he worked from home a little, and today he got up early and headed to work (he came home early, but I wasn't surprised because he isn't sleeping hardly at all!  The steroids are keeping him up all night!).  He's also been going for walks and takes the kids to the park.  He says he still feels dumb, though.  He can't get his thoughts straight.  But definitely a night and day difference from last week, or even a few days ago!

 

I spoke to the neurosurgeon that will be performing the surgery last Wednesday.  He answered most of my questions, but there's still some things that we're not very clear on.  He did go over some of the risks of surgery - possibility of weakening his right side more, but he expected for the surgery to go well and told us to anticipate 2-3 days in the hospital (if everything goes well).  If he needs rehab again, obviously that will be longer.  I would say that's our biggest worry about surgery - weakening his right side.  He's already having a hard time.

 

They are doing another MRI today so that the neurosurgeon can map out his brain prior to surgery.  The surgery is scheduled for 7:00 tomorrow morning.  As I think back to his first surgery, the MRI was done about 20 minutes before, leaving NO time for thorough mapping!!  So that's comforting - I think this neurosurgeon will be more prepared.

 

I keep getting asked the same question - if they are worried about the swelling, isn't another surgery just going to add to the swelling?  Well, that's what I would think.  I'm not really sure, other than my understanding is that they really need to get the swelling under control through medications, and they need to know what they're dealing with to know which medications.

 

So that's where we're at.  In my ideal world, they will see miraculous results in today's MRI and cancel the surgery all-together.  I don't know if that's even in the realm of possibilities, but if they go forward with surgery, I will just accept that this is for the best.  We've had too many prayers in our behalf to second-guess everything.

Answers

I'm actually glad that I posted yesterday.  I will be able to read it back at some point and remember just how panicked and devastated I was in that moment.

 

I wasn't expecting to get many answers at the appointment today, but we did.  I'll try to explain the situation the best I can, but there's a lot of information, and I'm hoping I have it all right!

 

Dr. Colman reviewed the MRI with us.  He explained and showed us the definite change and activity in the brain.  There was a LOT of swelling, it seemed to cover pretty much the entire side of the brain.  He said that the swelling was the reason for all of his cognitive and physical issues.  He said the swelling is now affecting many different areas of the brain, which is causing everything Jared has been going through.  There is some new activity, and it's mostly in the frontal lobe of the left side of his brain.  He says that he's not convinced that the increased activity is tumor, because it looks more broken up than solid, and there isn't really the bright ring around it that he would expect, and that in many aspects of the MRI, it actually showed improvement where he'd expect it to be worse if it were tumor.  But he can't be certain without going in through surgery.

 

Here's the problem.  We've got to get the swelling under control or it's going to cause permanent damage, and the steroids aren't doing it.  If Dr. Colman was certain that the new activity was dead tissue, he would give him a drug called Avastin, and it would take care of it.  If the new activity is tumor or cancer, the Avastin would be the wrong thing to do because it would cause future issues.  So he kind of needs some information (from surgery) to know how to go forward.  So surgery in the immediate future seems to be the plan.

 

Here's another issue:  They can scrape out some tissue in the frontal lobe where the new activity is to get a sample without much problem, which would seem like the easiest solution.  But that very well might be necrosis, where the initial area might have tumor.

 

When the neurosurgeon came in, I told him my concern, and he said he was having the same thoughts before coming in the room.  Is it going to be more beneficial overall to get a sample of the tissue in the frontal lobe, or to actually go into the other, more risky area to get the more-conclusive answers?  I told him we had discussed that we were fine with going into the more risky area as long as the surgery was done while he was awake, in which case they could see if they were causing permanent damage to the right side (physically).  He said that he didn't think Jared would need to be awake, and that there are ways to stimulate the hand during surgery to see if it is causing a reaction (which is usually more effective than someone being awake anyway).

 

So the plan for now is that they are going to discuss the options at their board meeting tomorrow and let us know what they've all concluded.  But it sounds like surgery is pretty definite, probably the first part of next week.  The question is where they are going to "dig."  The neurosurgeon also acted like he could do some extensive mapping of the brain before surgery that would avoid problems. 

 

I feel so much more hopeful right now, today, that it hasn't really crossed my mind that we could still end up with the same devastating news following next week's surgery.  But I'm not going to allow myself to go there.

 

Another thing we talked about to the PA - he told us that if this does happen to be tumor regrowth, they will probably request a sample of the original tumor to analyze it and see if this was a mis-diagnosis because things just aren't going as well as they would've expected with his type of Glioblastoma.  In the back of my mind, I have always questioned the diagnosis.  But in all those months of questioning, it hadn't ever occurred to me that the diagnosis might actually be WORSE than what we were originally told!  But the PA said that if they had a sample of the tumor, they could analyze it themselves and see if maybe he qualified for some experimental stuff they were doing at Huntsman.  So that is positive news.  If Jared hasn't responded to standard treatment, we've GOT to try something else, and in my research there wasn't much else!  So this at least gives us hope that there might be something different that might work for him. 

 

One more side note: (yes, there was a LOT of info!)  The neurosurgeon did say that all of this swelling indicates that his body is at least reacting to the radiosurgery.  That means it's fighting.  He said he is a lot more concerned with a person that doesn't show any reaction at all.  It means the body isn't fighting.

 

So overall, I feel better today.  Actually, I feel much better today.  There is still hope that all of his issues are NOT permanent, there's still hope that this isn't tumor re-growth, and there's still a slight chance of hope that the first one wasn't re-growth, either.  So we have hope!  And that will be enough to get me through this week of waiting.

And now I need to go and prepare another big birthday party for a sweet little thing that turned TWO today!  But today I won't have to fake the smile!

Happy Birthday, Miss Averie!

Definitely reason to smile!

 

Seriously?!

I just read my last post.  It's weird how you think that something was hard, then you fast-forward a couple weeks and realize that what you were going through previously wasn't all that hard compared to where it is now?  Unfortunately that's where we're at.

 

So I tried and tried to get Jared to go on Topamax, but he was determined to just tough it out.  We were actually able to enjoy a fun couple days for Spring Break in St. George, then the following week he was there again for work.  He got back about a week and a half ago and that's about when his major migraine started.  Usually he'll have a migraine, but it will go away after a while after taking some medicine.  This one wasn't going away.  It started last Sunday.  Monday he was flat on his back all day.  Tuesday he forced himself to go to work, but called me a couple hours later to pick him up.  He was NOT doing well.  I told him to call his doctor and he picked up his cell and couldn't even figure out how to dial the number.  He also threw up all over the bed and didn't even realize it.  At that point I had talked him into going on Topamax.  He decided that as much as he felt like he couldn't function on Topamax, that level of functioning was greater than this level of functioning.  So I called the doctor and they called in the prescription, which he started taking that night.  Wed. the migraine continued, Thurs. the same, and he knew he had to go to work Friday.  He had some meetings he said he couldn't miss, but didn't know how he was ever going to pull it off.  I managed to get a migraine pill, made sure it was safe with all his other meds, and he took it Thurs. night.  He had a little relief, but the migraine was still there Friday when he went to work.  He lasted a miraculous 4 hours, but started throwing up, and I went to get him.  I again called the doctor's to see if we could get some actual migraine medication.  The PA, Shawn, called and asked me what was going on, and insisted that he bump his steroid dose way up, and said he should be feeling better the following day, and told me to call him with an update Saturday.  When the migraine still wasn't gone Saturday evening, I called Shawn back.  He told me that I needed to take him into the ER to get a migraine shot, but also told me to insist on an MRI while I was there since we had one coming up in a couple days anyway (he didn't necessarily think the MRI was needed, he just said we might as well).  So we headed up to the ER at about 7:00 Saturday night.  The doctors in the ER were going to send us home without the MRI, but we pushed it a little, so they gave in.  We didn't know it was going to take so long!  He did get the headache concoction, so he started getting some relief.  A little later they added morphine, which helped even more.  He said his pain was finally down to about a 4 - the lowest it had been in a week! 

 

We got the results of the MRI at about 1:30am (me knowing that I have to teach a class that I haven't prepared for at 9:30 in the morning!), the doctor said that there was extreme swelling in his brain and told us we needed to sky-rocket his dose of steroids back to the maximum dose (he had slowly tapered himself down to a 1/2 mg/day and they pushed it back to 16mg/day).  They also said there was sign of new cancer/tumor activity.  I think we both turned our brains off after that sentence.  It was so late and I just didn't care to process it.  We also knew we had an upcoming appointment with the oncologist to discuss everything, so we didn't push for anymore information. 

Someone was obviously excited for his cake!
(He insisted on a cake that looks like a wheel.)

Sunday (yesterday) was Drew's B-day, so we tried to keep a big smile for his big day.  He had been counting how many "sleeps til his birthday" for quite a while.  So we tried to enjoy ourselves.  And Jared was feeling the best he had in quite a while, and could actually carry a normal, coherent conversation, which was a nice change.

 

Happy Birthday Drewy!

Today has been another rough one.  The headache is tolerable, but he is completely out of it.  He couldn't figure out how to turn off the alarm this morning, he fell in the bathroom when he was trying to get ready for work, he walks like he's drunk, and he tried to text his brother and wrote something that looked like Averie had gotten the phone, and he told me he thought he had written "just tell me when and where."  So I obviously didn't let him go to work.

I honestly don't know what to think or expect at this point.  I really hope that this is temporary.  I don't know that the doctors will have any answers in the morning, I don't know if it will get better, I don't know what the course of action will be (although I'm pretty sure they are going to recommend surgery - something I'm not thrilled about jumping into when he's already doing so horribly).

 

But the biggest frustration is that the radiosurgery only "bought" two months!!??  We both really thought it would be longer - 5, 6, 7, even 8 months?  This is really discouraging, to say the least.

 

I will report again once we hear what the oncologist has to say in the morning.