The Plan

I've been meaning to update for quite a while, I just haven't had the time.  And there's quite a bit of new information that I've actually known for a while, so I apologize for the delay!

 

The tumor board of experts got together on Thursday, the 10th, and reviewed Jared's MRI.  They all concluded that it was tumor re-growth, but they also agreed that invasive surgery wasn't the answer...yet.  They decided to do what they call radio-surgery.  It's pretty much gamma knife surgery, but a little different.  We met with the neurosurgeon last Tuesday to go over the details.  It's basically just like a radiation treatment, but much more powerful and precise, with lasers coming from all different angles.  Before they can do the procedure, he will be fitted for a mask to go over his head (just like he did for radiation) and he has to get an MRI and CAT scan.  The actual procedure only takes about 15-20 minutes.  The only side-effect is a possible headache for a day or two, but it's out-patient and really simple.  So it's definitely something we can deal with!

 

The down-sides to this procedure:  It's not as effective as regular surgery, which is a HUGE minus for obvious reasons, and the doctor acted like this is basically just prolonging a more-than-likely future surgery.  So I guess we're just buying time.  My only question or hesitation with the radio-surgery is this:  If the radiation from a year ago causes necrosis or dead tissue in the brain (not good), won't this radiation create even more future problems?  Obviously if it's re-growth, that's the least of their concerns.  And the other question is:  What if this isn't re-growth at all?  I think that question will be answered when he gets his pre-surgery MRI and CAT scan.

 

So we're looking at probably next week for the procedure to take place.  We're still waiting to get pre-approval from the insurance.  It's now been three weeks since the last MRI.  The day before the last MRI he went to a store with his dad and said he REALLY struggled.  He had to sit down after a couple minutes and they had to cut the trip short.  He's noticed this past week that he hasn't been near as dizzy or off-balance.  If the tumor were getting bigger, you'd think his symptoms would be getting worse, and instead, they're improving, but I'm no doctor.  We're definitely hoping and praying for a miracle on this next MRI.  If it still shows additional growth, we need to just have faith and hope that this radio-surgery will do the trick.

 

On the brighter side, Jared got a new Murano a few days ago!  And we love it even more than the old one!  And honestly, we're both doing okay.  We had a really rough first four days, a four days I wouldn't wish on anyone, but we've both been doing much better this last couple weeks.  Jared hasn't been sleeping much, but I think even that's gotten a little better.  Right now we're both anxious to get this procedure over with!

Hope for the Best...

...but expect the worst.  That was kind of my mindset going into this last MRI.  Jared has been feeling a little more "off" lately.  He had a couple days in December where he was feeling a seizure coming on, so he took his medicine to stop them.  The seizures definitely had us concerned - he hasn't had any problems lately, so the onset would possibly mean changes in the brain.  He's also been a little more dizzy lately.  So the past couple weeks we've definitely been more nervous.  So going into the MRI last Thursday, it wasn't that I wasn't hopeful, but I didn't want to get blind-sided.  But the problem with expecting the worst was that the "worst" was much worse than my worst-case scenario, so I would say we were both still blind-sided.

 

The PA was lining up the MRIs to show us the changes from two months ago, last month, and this one.  The one from two months ago didn't really show anything I could see.  The one last month had a little tiny mark, and this one clearly had something, so we both knew immediately this wasn't going to go how we'd hoped.  This "thing" had grown quite a bit in the past month.  To make a long story short, the oncologist told us that it could be one of two things: either necrosis or tumor re-growth, and he recommended immediate surgery.  This is why...  If it is tumor re-growth, it's still small, so surgery wouldn't be AS invasive - it obviously gets more invasive and riskier the bigger a tumor gets.  If it's necrosis, it would be beneficial to get in and clean up the area to prevent potential future damage.  To explain the necrosis side, necrosis is basically dead tissue.  They said that this is about the time that they would start to see necrosis (or damaged tissue in the brain) caused by radiation.  It usually takes about a year for the effects of radiation to start showing up.  And if you have necrosis, it can cause damage to the surrounding brain tissue.  Not always, but it can.  So that was the reasoning for the immediate surgery - to know for sure what it is, and to take care of whatever it is.  He said that it is impossible for doctors to know for absolute certainty what something is based off of an MRI, but that he would guess it is tumor re-growth because necrosis has more of a cloudy look to it, and this appeared more solid.  So this was the plan - he told us to schedule an appointment with the neurosurgeon to discuss the possibility of surgery and to see how invasive it would be and to weigh out the risks and benefits.  He told us that he was going to present the MRI to the "Board of Experts" that meets every Wednesday.  He said that with the big group of neuro experts, they could draw a pretty good conclusion.  So we knew that we weren't going to be making any major decisions until we met with the neurosurgeon, and until we got the group consensus.  The other thing I should mention is that, given all the factors in Jared's case (that the tumor was encapsulated, he's young and healthy, he had the supposedly beneficial infection, etc), they were really surprised to see the possibility of tumor re-growth this early.

 

My plan has always been to research other treatment options if the tumor came back.  So I've been doing my research, and the more I research, the more I get sick to my stomach.  Even the one we were thinking of as a possibility didn't seem to add longevity at all, and would hardly be worth having him move somewhere for treatment. 

 

We met with the neurosurgeon yesterday.  He told us that the surgery would be quite invasive, that it would most definitely cause additional trouble to his already weakened right side, and that he thought it was too early in the game to jump into something so invasive.  He basically said that the risks outweigh the benefits at this point.  He, too, was leaning toward tumor re-growth based off the MRI.  But his thoughts were to give it another month to see what happens.  Or he also said we could consider the gamma knife, which is basically laser surgery.  It's much less invasive, but not as effective.  But again, he said we would know more after the doctors got together.  So this big "meeting" is tomorrow.  

 

So it's been a rough few days at our house. 

 

Last night Jared's dad gave him a very powerful blessing.  It definitely restored my hope, and both of us have felt much better last night and this morning.  So we feel confident that the doctors will lead us in the right direction, whatever that may be.

 

I keep telling myself we've been told tumor re-growth before, and they were wrong.