Today is Friday….POD 4 (Post-op day 4).  Brooks is doing amazingly well….or maybe he is just amazing!!

This afternoon, he stood out in the front yard and practiced swinging his golf clubs! If you didn't see the incision running along the side of his head, you would never know he just had major brain surgery!  Each day, he shows vast improvements.  I have to remind myself that he still needs to take it slow and easy!  I sense from him that he is getting very bored….and I love it!  It means he is really getting back to his "old" self…..minus the brain tumor, of course!

My father had surgery yesterday to put is poor, splintered upper arm back together.  They put a plate with 14-15 screws through it to hold it together.  Brooks took one look at the x-ray and said, "Wow…Grandpa definitely has it worse than me!"  Well. it is not a contest, and even if it was….I would say it was a tie!  The good news is that they are both strong, otherwise healthy men who have the summer ahead of them to heal.

So, on we go.  As I told my students at school, life is not always fair and it is certainly not predictable.  Life will throw you a curve ball once in a while, just to make sure you are paying attention…especially to the things in life that are most important!  In my life, family and health are most important and this entire journey has reminded me how fortunate I have been in my life to have a loving and healthy family.  I will never again take that for granted!

So….we made it!  We are home….more importantly, Brooks is home!!

This part of the journey is over.  The Mayo Clinic is amazing!  If you've never been, you have to visit.  The history, the legacy of so many amazing pioneers….to be a part of that…to benefit from all that knowledge, skill,  commitment to excellence is mind boggling.  I am so grateful that we had access to the best place in the world for neurology and neurosurgery.

Now, we take it one day at a time.  Brooks is learning that he has to be patient with his recovery.  He needs to let his brain heal.  His doctors have told him that it will take week…even a few months for his brain to recover.  We have to celebrate the improvements we see each day.

So….we move on to the next part of the journey.  I am expecting amazing things from this brave young man of mine!  He can do anything he wants to.  Nothing will hold him back now.  Thank you all for your support!

Mary

Hurray!  The light is really visible at the end of that tunnel!!!

I actually went home last night.  Brooks was pretty out of it and it was my mother's birthday.  Oh….and I forgot to mention that over the weekend, my nearly 85 year old father took a tumble down the stairs at my sister's house and broke his upper arm!  Thank God he didn't break his neck!!  But, that was another reason I wanted to go back to the cities.  He will be fine (after surgery!!), but his summer of golf has certainly been interrupted!

I did get up early and drove back so that I wouldn't miss the rounds by the doctors.  I did miss the first round…which was OK.  When I arrived in his room, there he was, sitting up in bed with his head completely unwrapped!!  Wow!!  He looked terrific!!  And, he was hungry!!!  (I would love to post a picture, but he wants to be the first to post a pic on social media!)  After breakfast, he actually got to get out of bed and walk to the bathroom!  Dr. Van Gompel stopped by and was happy to see how well he was doing.  He was ready to move out of the ICU into the neuro-recovery floor and possibly go home by Wednesday!!  Yay!!!!

The rest of the day was spent watching TV, napping and spending time on his computer.  He got out of bed and walked around his room and to the bathroom a number of times.  He did have a couple of small seizures, but that is nothing to be alarmed about.  The surgeons said that this was expected post-op.  When you mess around in the brain….the brain is not happy.  We need to let the brain heal and the swelling to go down.  We are just hoping that he will get the green light tomorrow morning and get to go home tomorrow afternoon!  It seems unreal that I am even saying that given all he has been through!  I don't know if I could have done all that he has!  I am so in awe of his courage!

So…at this point, the biggest concern is what to do with his new hair-do.  His pain is pretty minimal (incision is a bit sore) and he is running out of places to be poked (needing to move his IV multiple times).  He is ready to be at home in his own bed and we will hopefully get him there tomorrow.

Thanks so much, one more time, for caring about Brooks!  I feel surrounded by love and support and that makes me strong which, in turn, helps Brooks be strong.

Mary

Another early start for a day of surgery. Last night was stressful.  Brooks and I talked a lot about the risks he was facing.  His biggest concern….his biggest fear was the risk of losing the ability to communicate fluently.  We knew all along that this tumor was in a precarious spot.  We knew that it presented some risk of impairment to his speech.  As the clock was ticking, the anxiety about these risks was rising.  But, he had come this far and we decided that, as scary as it was, it was a small risk for a big gain.

We were up by 6 AM, talked to the resident and waited.  The team came up to get him to take him to pre-op around 8:30 AM and we said our good-byes.  At that point, there was nothing to do but wait.  We heard different amounts of time from each doctor and nurse we talked to….anywhere from 3 to 6 hours.  I received a call informing me that the procedure started around 10 AM.  After one other call telling me that the surgery was going well, I was shocked when they called at 12:40 to tell me it was completed.  

We met with Dr.Van Gompel following the surgery and he reported that things went very well.  He showed us a short video clip of the actual surgery.  I cannot tell you how amazing it was to look at the screen and realize that I was actually looking at my son's brain!!  They took about 80% of the tumor.  There are two reasons why they could not take 100%.  First, there was a significant blood vessel running through the tumor that they needed to preserve.  Secondly, they needed to avoid the part of the tumor that was closest to the speech and language area of his brain.  The hope is that reducing the volume of this tumor will take the pressure off of the area it was pressing on and therefore relieve the seizure activity.  The type of tumor, a DNET, is a very low-grade tumor and should not return.

So…at this point we were happy.  The surgery was a success.  But, we were still unsure about the affect the surgery may have had on Brooks' speech….even temporarily.  So….again we had to wait.  He had a couple more hour in recovery.

At about 3 PM, the team arrived at the door of his room.  I went into the hallway to greet him.  He looked right at me, and with a very groggy voice said "I can talk."  And with that, we knew that the worst of the fears were gone.  For the next hour or so, we were entertained by all the things Brooks could say.  He was pretty loopy from the anesthesia, so he was very funny.  It was such a relief for all of us!  We could not be more thrilled!  We still have to see if he is truly seizure-free and that may take some time.  But, the biggest hurdle has been cleared.  We can deal with anything after this experience!

Thank you a million times over for all the prayers!!  We are so thankful!!

Mary

Tomorrow is the day.  Brooks is scheduled for surgery at 8 AM.  The plan is to remove most of the tumor and get him seizure-free.

Please pray for God to guide the skillful hands of Brooks' surgeons and for Brooks to have a complete and speedy recovery!

Thanks again for checking in on this blog and for sending positive energy and prayers to Brooks.

I will post an update tomorrow after he is out of surgery.

Mary

Today was a good day. Brooks' pain was minimal.  He was tolerating the bed rest by watching soccer, the Belmont Stakes (history in the making!) and the second game of the Stanley Cup.  He was in a good mood!  It was nice to have him back to "normal".

I went home last night for the first time since Sunday.  I needed a good night's sleep and to check in at home to make sure everything was in order.  Kelsy has been there, but I just wanted to check in.  As it turns out…..it was the best thing for Brooks as well.  He got a great night's sleep.  They have now put him on an "enhanced sleep" status, which means minimal interruptions during the night.  He is not having any issues related to his vitals (heart rate, blood pressure, temperature, etc.) so he does not need to have them checked every 2 hours.  It is better for him to let him sleep.

The only problem with not staying overnight is that I miss the early morning rounds of the doctors.  Today, his surgeon, Dr. Van Gompel stopped by to talk to him about the surgical options.  Brooks' dad, Todd, was there with him to hear the options.  The decision, of course, is Brooks.  When I got back to the hospital, we talked about the risks and the benefits.  I know he will make the best decision for himself.  He has already shown such courage throughout this journey!  I am so proud of him!

The surgery will take place sometime on Monday.  I think part of Brooks' good mood was due to knowing that this will soon be behind him.  We are so thankful for all the good wishes and prayers being sent his way!  Keep 'em coming!!  And thank you, thank you, thank you!!!!

Mary

They started to arrive around 8 AM and by 8:15, the room was so crowded. I had to leave.  There were multiple doctors, 2 epilepsy technicians, at least one nurse, the specialist in charge of the study and LOTS of equipment.  Their task was to stimulate the electrodes that they had established were involved in the onset of Brooks' seizures while having Brooks perform tasks.  These tasks included speaking, reading and doing simple physical tasks.  In this way, they could determine what these areas controlled.

After the testing, Brooks was fairly exhausted.  Unable to eat or drink at this point (with the possibility of surgery in the afternoon still looming), he went to sleep.  A bit later, his surgeon, Dr. Van Gompel arrived with the information we had all been waiting for.  The mapping revealed what they had suspected all along.  The seizure "zone" is a speech and language portion of his cortex. They will not resect any part of that.  However, Dr. Van Gompel is confident that removing most of the tumor will relieve the pressure that it puts on this speech area and therefore will relieve the seizures.  There is also a possibility they they may also combine that with an implant that would "intercept" a seizure before it begins.  They will run tests through the weekend to see if Brooks seizures respond to this type of device.  Either way, he will have surgery Monday or Tuesday.  At that point, it will be a matter of a day or two in the ICU, a few more days healing and then he gets to go home and put this all behind him with an exciting new beginning!

Today was a roller coaster ride.

Actually, last night was the start of the ride.  Brooks had a third seizure….which was good.  The hard thing was all the discomforts of being tethered to a bed for 3 days. As the restless night turned into a new day, some of those discomforts were dealt with, thanks to the phenomenal staff here.

Early in the day, after a few mixed messages about when the next step would take place, the Neurological team came by to check in with Brooks and to tell him that they had enough data from the grid to proceed to the next step!  The seizures have shown activity in a very discreet area of his brain and have been very consistent.  Tomorrow morning, they will map out this area and stimulate the electrodes on the grid in this area to determine exactly what that part of the brain is responsible for.  If the area affected does not involve critical cortex, it will be resected.  The concern, of course is whether or not it is critical cortex associated with speech and language.  There are encouraging signs, but we won't know until the mapping is done. There are a few different alternative endings to this story…..we will just have to wait and see.

The bummer for Brooks is the timing.  Whatever they decide, it will obviously involve another surgery. They need to remove the grid and replace his bone flap.  It would be fantastic if this could actually happen tomorrow afternoon, but the chances of that are pretty slim.  More likely, it will have to wait until Monday or Tuesday, which means a few more days of bed rest and all the discomforts that brings with it.  Please pray for patience and acceptance of whatever the plan is.  In the scheme of life, a couple of days is a small price to pay for a lifetime of relief.  For that, we will all be so very grateful!!

One other thing….Brooks spent a few hours again participating in this memory study.  The young doctors that are running it were very grateful for his participation.  It made me very proud to be his mother!

Thanks again for all the support!

Mary

Today was pretty uneventful  This was what we expected…a lot of laying around, watching TV/movies/youtube.  Boring!!!

On the positive side…..his pain was pretty minimal.  He was very alert and awake all day.  I don't think he even took a single nap all day!!

Another positive event…he had another seizure!!  It was smaller than his usual seizures, but it was enough for them to "capture" on video and on the computers that are monitoring his brainwaves.  Here is a picture of his room from behind his bed.  There is hardly room to move!

Hopefully. with the medications being reduced today, he will have another seizure or even a few tonight or tomorrow.  That should give them enough information to map out what is happening and where so they can make a plan for the next surgery.  We are praying that it could happen as early as Friday.  That would be phenomenal!

We are just sitting around watching the first game of the Stanley Cup……happy for any diversion!  Brooks is cheering on Tamps Bay….enough of the BlackHawks!!

Thanks for checking in!  Hopefully, I will have a plan to report tomorrow!

Mary

Last night went well.  I expected the worst and it turned out to be the best.  Brooks slept all night.  Except, of course for all the interruptions from his phenomenal nurses doing their job.  They are very exceptional….kind, warm and comforting!  They have really been instrumental in lowering Brooks anxiety about this whole ordeal.  They are gentle with every question or move they make and explain what and why they are doing what they do.  He is truly in the best hands!

The day has been good as well.  They have really managed Brooks' pain, keeping him on a schedule so that he never gets very uncomfortable.  Sitting up makes his head throb somewhat, but that is the only thing that he has complained about today (and those complaints were few).

The best thing that happened today was that Brooks had a seizure.  I know that may sound odd, but that  is what we wanted to happen.  The more seizure activity while he has the grid of electrodes implanted, the more information they have to pinpoint and map out exactly what is going on and where.  That will determine what the next step will be.  Hopefully, they will have a plan in the next few days.  There are a few options depending on what they see from the grid.  All of them will require another surgery.  Hopefully, it will all be complete by early next week.  Lots of prayers for a quick and successful end to this part of his journey!

Another interesting note…Brooks was asked to participate in a study being done by the Dept. of Defense on the brain and memory.  The results will help future patients with memory impairments (from head trauma, concussions, etc.) and will actually directly help with Brooks' memory as well.  Three times today, Brooks was asked to look at lists of words followed by some tasks (math problems, for example) and then recite as many words from the list that he could recall.  Tomorrow, they will stimulate certain areas through the electrodes on the grid (no….it won't hurt) and then repeat similar tests.  Each set of tests took 30-45 minutes and made Brooks pretty exhausted.  He spent a good part of the remainder of the day sleeping.  But, when he was up, he was using his phone (texting, watching youtube) and he is now watching something on his computer.  He seems like himself….except for the hole in his head (he said it……not me!!)

Enough for now….another update tomorrow evening!  Thanks again for all the support and prayers!

Mary

Monday, June 1

Brooks had an early start…checking in at 6 AM.  He slept most of the night, which surprised me.  I thought he would toss and turn all night….guess that was just for me to do!

Lots of pre-op activity….vitals, MRI, EEG, etc.  Brooks was clearly nervous, but was being very brave.  He even had Kelsy and I laughing as he played around in his wheelchair while awaiting transport to the pre-op area. The surgery was planned for 8:30 AM, but they didn't actually begin the procedure until 10:30.  We were told that the surgery would take 4-5 hours with about 1-2 hours of recovery.  I was surprised when we got a call only 2 1/2 hours later that he was out of surgery and headed for recovery.  We met with his surgeon (Dr. Van Gompel) who reported that all had gone very well.

Those of you with queasy stomachs may want to skip this next paragraph!  During surgery, they removed a 3-4 inch in diameter part of his skull, took a small biopsy of the tumor and placed an electrode grid directly on the surface of his brain.  They sewed up most of the skin flap, leaving open a window to allow for the wires that connect to the grid to extend out to the machinery he is plugged into.  They will monitor his brainwaves and video monitor him as well for the next few days while they lower his anti-seizure medication.  The hope is that he will have one of his typical seizures in the next couple of days.  That will give them the information they need to determine the next step….another surgery  So, now we wait.  Until then, he is without a significant bone flap on his left side.  Surreal!

As for how he is feeling….well, not great.  As with most surgeries, the first few days are pretty rough….and I imagine it will be that way for Brooks.  The nursing staff here are fantastic and are really trying to help keep him ahead of the pain.  Thankfully, he is sleeping a lot and only wakes for short periods to feel and complain about the pain.  Poor guy!!  

I think he is wondering why he ever started this snowball rolling!  But, I am confident that in the end, he will be so happy he did!  His quality of life will improve dramatically and the freedom from this burden will be lifted!  And, the satisfaction of knowing he conquered this will give him the confidence to succeed in anything he wants to!

Thank you to all the family and friends who have been saying prayers and sending hugs and love to him!  Your support for us is pricelessWe are forever grateful!!

For now….

Mary

Here we go!

May 31, 2015

Today the journey begins.  Actually it began long ago.  In fact, it may have begun 20 years + 9 months ago…..in utero.  They (the doctors) believe that this tumor in his brain formed as he was a developing embryo!!  He describes feeling "funny" episodes (dizziness, interruptions, inability to speak) during his time at daycare.  It wasn't until he was 14 years old, playing baseball, when his crazy mother insisted on taking him to the doctor after he pulled himself off the baseball field for one of these episodes (convinced that it was due to a lack of water and a healthy diet). Instead, the doctor ordered an MRI which revealed a tumor…benign (thank God), but a tumor!  He had lived with it (most likely) his entire life, but at 14, he could finally articulate the feeling of these frequent episodes…the seizures.  From that point on, it was a whirlwind of doctor appointments and tests to determine exactly what he was dealing with and what treatment was needed. At the time, he was advised to treat the seizures with medication and leave the tumor alone.  The tumor had nestled itself into a fairly delicate area of his brain…one that controls his ability to speak and to understand language.  So, we did as we were told and left the tumor alone.

Fast forward 5 years…..Brooks is 19 years old and decides that he has had enough of this disruption in his life!  After many years of upping, altering and adjusting his medication, Brooks continues to have (approximately) a seizure every week.  He pushes his reluctant Mother to get an appointment at the Mayo Clinic to get a second opinion.  And, though I thought he would be told the same thing (leave it alone), the doctors came back with a confident…"we can remove this and get him seizure free"!!

So…here we are!  It is Sunday night and Brooks checks in at 6 AM.  This will begin the next chapter of the journey.  I will be updating this blog each night to let everyone know what is going on and how Brooks is doing.

Thanks to all who are checking in and care about Brooks and our family!  I truly appreciate all the positive thoughts and prayers that are coming our way from all of you!!  I know that the start of this new path is scary, but I know we are not alone!  And for that I am very grateful!

Until tomorrow!

Mary