Adios Keppra

Dad is officially off Keppra and back on Dilatin. It's kind of a big deal. This is how the story goes:

-Dad takes Dilatin for many years following his first bout with the brain tumor in 1988, but is eventually weaned off of it and allowed to be medication free for about 10 years (note: most BT patients take anti-seizure meds for life - very rarely are the cut free from this burden)
-After the onslaught of new tumor activity and subsequent 2nd brain surgery in early 2005, he's put back on anti-seizure meds, namely Keppra, to control ongoing simple seizure activity
-Downside is that these drugs make him even more "out-of-it"
-Is weaned off these drugs summer 2007 by crappy neurologist, who should have never allowed this to happen without MRI and seizure activity study
-After seizure-induced coma a few months later, followed by another brain surgery for tumor recurrence, is permanently placed back on Keppra, a drug with no generic counterpart I might add
-Summer 2008 dad falls into the Medicare prescription coverage gap/donut hole..... a long period of time when Medicare will not cover drugs.... bills start to ring up in the $100's of dollars for Keppra each month
-Mom contacts his new neuro-oncologist to find out if safe to switch him back to Dilatin, which has an affordable generic counterpart
-After several weeks of careful monitoring and tapering, dad is now full-time on Dilatin, and seems to be less "out-of-it" and a bit more communicative

Looks like the plan worked. It benefited his overall well-being, and is less of a financial burden. He's back in physical therapy about 2-3 times a week, and still keeping up with his Tai Chi class twice a week. I picked him up from class last week, so I had a chance to observe his progress in his Tai Chi moves from over the last few months. He's much improved. Overall he seems a little less weak, although bruises and scratches from falls around the house are still a regular occurrence.

On another note, dad has a new caregiver that seems to be working out well for him and mom. She's quite friendly, very helpful and experienced with senior care and is a good fit for them!

Rhonda's Masterpiece

Continuing good news!

Good news from today's neuro-oncology check up. Dad had an MRI a few hours ago and just got out from meeting with new Dr. N-O. She said all looks well. Woo hoo! We love that kind of check-up. Another interesting note is that he's going to try to switch his anti-seizure meds from Keppra back to Dilatin, which is what he took for YEARS following his initial tumor diagnosis and surgery. He never had serious side effects from it, seemed to tolerate it very well and it was inexpensive. He's been on Keppra ever since he started seizing again at the end of 2004. (Not sure why they choose Keppra over Dilatin back them, but we didn't question it at the time....not until now that dad has fallen into the Medicare prescription "donut hole" and all his medications are now REALLY expensive!) The downsides of Keppra have been that it makes him very groggy, it's expensive and we also feel that it contributes to his overall "slowed-down" state. We are hopeful that changing him back to Dilatin will control seizures, be more cost-effective and help him navigate further out of the fog. Keep your fingers crossed.

In other news, mom and dad are very well settled into their new home and it looks stunning. Mom has really made it into their little haven. New pictures coming soon.

Grandpa's Girl

Happy Grandpa. Celebrating Ava's 2nd birthday last month. Adorable!

Thank you Selso for the WONDERFUL pictures. Ava loves you. :)

Drs. and Medicare...Ugh...

A challenge we've had to overcome lately is trying to find a neuro-oncologist to follow dad's case here in Dallas. It's imperative that he sees this particular kind of specialist...not just an oncologist, or neurologist, or neurosurgeon. The neuro-oncologist has the insight, training and perspective to best follow a brain tumor patient. Since dad was able to go on disability a few years ago (he can't work any longer due to his deficits), he is now also on Medicare. Alas, finding this certain type of specialist dad needs that also takes Medicare was tricky. I find the whole situation completely ironic. Many brain tumor patients eventually seek disability and hence become Medicare users. Why would it be that the specialist that needs to follow these patients would not also take Medicare, which many of them would be on?

We met with a neurosurgeon this week (which was a total waste of time) as per referral from dad's new internist. Since we couldn't find a neuro-oncologist here in Dallas that would take dad (because of the Medicare), we were referred to this surgeon and told he could follow his case. Of course, my instinct was correct and no he is not the appropriate person to follow him. All of this, of course, after going to the appointment, sending all the records, sitting through 2 nurses asking the same questions before we finally go the low down from the surgeon. Like I said, total waste of time. The good thing that came out of it was a referral to another neuro-oncologist, whom w previously were unaware of, that as it turns out will take dad's case. Whew. Disaster thwarted.

He's a month past his scheduled MRI. He's supposed to get them every three months to make sure everything is stable. I'm slightly bothered that he's fallen behind schedule. We made an appointment with the new Dr. N-O and tried to get them to schedule the MRI before the appointment, but they wouldn't go for it. So this means THREE appointments - one to meet and great and do all the paperwork, etc., one to go for the MRI, and one to meet with Dr. N-O again to review the results.

The good news is that dad is off to a great start with his twice-weekly physical therapy. And he's still regularly attending Tai Chi. His Keppra levels are now where they should be and he definately seems less medicated and a little bit more alert.

Here's a video we took awhile ago of the nightly firefly show in mom and dad's backyard. Enjoy!

Doing great!

Good news. Seems that the decrease in medication IS having a positive affect on dad. He's definitely more responsive, aware and, dare I say, energetic. He's still got a long way to go before he'll be truly energetic by anyone else's standards, but for us he seems to be a little bit more peppy than before. He started physical therapy this week and according to mom they are a little more hard core at this facility. He said he was actually sore from the work! He's spending a lot of time working on projects around the house and seems to be a little more dialed in to his responsibilities. All good news. It's almost been a year since the recurrence fiasco. Hard to believe it's been that long, but so happy it's even farther behind us.

Feeling better

Last week dad had a check up with a new internist. It was a very productive appointment because it was his belief that dad is somewhat over-medicated (my thoughts exactly...). They discovered that his blood pressure was EXTREMELY low and took it several times to make sure they had the right reading because apparently it was that unbelievable. Unbelievable because he's been on high blood pressure pills! So that would explain some of the overwhelming fatigue.... His levels of Keppra were also too high, so they decreased that, and took out the blood pressure meds altogether. When I saw him today he actually seemed somewhat more aware and dare I say a little chipper. I was so happy I hugged him twice.

In other news, mom and dad's neighborhood is heavily dotted with very large, shady, beautiful trees. Sadly, during a voracious storm last week, one of these scenic beauties that resided in there front yard came crashing down, narrowly missing a serious run-in with the garage. Sadly, she was dismembered and carried away. Now my shady parking spot has been eliminated. I should also mention that several other large trees in the neighborhood fell victim to these 60+ mph winds. Tree trimmers are rolling in the dough this week.

(This letter was written by Fatima, from the oligo on-line support group.)

Senator Edward M. Kennedy
2400 JFK Building
Boston, MA 02203

May 22, 2008

Dear Senator Kennedy:

As the news of your diagnosis filtered through the air waves, we were all greatly saddened. Who are we? We are a group of brain tumor survivors and caregivers who understand the challenges you and your family is facing. We want you to know that thousands of brain tumor patients and families across the U.S. and throughout the world are praying for you and your family.

All of us have had different experiences that have ranged from triumph to frustration to disappointment. While some of us have grieved for losses, many of us boast stories of success, triumph of the human spirit and establishment of invaluable connections with family, friends and others within the brain tumor community.

Ironically, the month of May has been designated by the brain tumor community as Brain Tumor Awareness month, and this month is used to make our policy makers aware of issues that we so desperately need help with. While media pundits have been quick to highlight the morbid details of the disease, they have been too quick to ignore the stories of thousands of survivors.

As Lance Armstrong aptly once said, "Anything is possible. You can be told that you have a 90-percent chance or a 50-percent chance or a 1-percent chance, but you have to believe, and you have to fight." Lance Armstrong, like so many other survivors are living examples of what human beings are capable of achieving despite great odds.

As a champion of great causes in the past, we have no doubt that you will fight your brain tumor with your indefinite courage. We urge you to have faith and confront this disease with the amazing spirit you have demonstrated in your career through the decades.

We wish you all the very best with your treatment. As you yourself once famously said, "The work goes on, the cause endures, the hope still lives and the dreams shall never die." Our prayers and thoughts are with you and your family in this trying moment.

Mr. Brain Tumor Goes to Washington

Unless you've been under a rock, you've heard that Senator Ted Kennedy has been diagnosed with a "malignant glioma." I am saddened, deeply saddened. Such a great man, such a terrible disease. I put his diagnosis in quotes because it's actually quite vague. There are many types of glioma. And that they used the term malignant simply means that it's fast growing (the usual cancer terminology of benign/malignant falls into some grey areas [ha ha ha, catch my pun] when it comes to brain tumors). I speculate that he may actually have GBM- gioblastoma multiforme, the really bad one. It spreads quickly and infiltrates deeply. BTs are not usually solid masses of tumor cells that are easily identifiable. They are so deadly because they grow into tentacles or tiny fingers that reach into the brain, sometimes making complete removal all but impossible. As I understand it, his tumor is in the parietal lobe, housing eloquent brain function. They would do more damage with surgery than good. That's why they're saying he underwent a biopsy, which is not typical with brain tumors. It means they still had to do a full craniotomy to get to the tumor site, survey the extent of tumor (only some of which was discernible through surgery) and take tissue samples to determine pathology of the tumor and how to proceed with treatment. At this point, his best hope is that his tumor is chemo-sensitive (only some BTs respond to chemo) and a combination of chemo and radiation will shrink his tumor, or at least keep it in it's current state for some time.

And FYI, gliomas are a family name that applies to many types of BTs, one of which is oligodendroglioma, the tumor that's been haunting dad for 2o years. Dad's also is considered malignant, but again, they don't really use that terminology. His is grade 2.5 out of 5, based on the World Health Organization's brain tumor classification system.

Happy and comfortable

I'm pleased to report that dad seems to be doing very well these days. He is enjoying slowly unpacking all his boxes in the den/office....each box like a treasure chest for which he takes much time pouring over the old books, records and trinkets within. This is someone who truly appreciates their things. (One of dad's favorite sayings is "I'd rather appreciate things I can not have than have things I can not appreciate.")

He even unearthed a box of me and Jenny's old school projects... pure gold. I'm grateful that he took the time to archive these for us and I look forward to when Ava can look through these and have a good laugh and maybe learn a little bit about what I was like as a little girl.

Otherwise, dad is enjoying relaxing on the back deck and soaking up all the of natural beauty they have been blessed with in their new home and neighborhood. It's a naturalist's dream. So far we've been treated to spectacular nightly firefly shows at dusk, little green lizards that move slowly enough to let you appreciate their vibrant color, cotton tailed bunny rabbits, fiery red cardinals, many varieties of birds, unusually tame squirrels and one large turtle, approximately 12" in diameter according to mom.

Rockwall house tour!

Grandpa Lowell

As the lone male in our family (except of course the addition of Jose and Sony), dad is pretty darn happy about welcoming a baby boy this October. I gave him the good news today and he was very pleased.

The dust has settled from the chaos of the move and all is well in the new DeBok household. Mom and dad are feeling quite comfortable in their new surroundings and their home is really starting to look like their home. Picture show soon to follow...

Here is dad at Tai Chi last week. He's doing great!

Tai Chi

Here's a quick pic I snapped at dad's Tai Chi class this morning. I seems to really like it and the instructors are really great. Plus, all the other ladies in the class seem to like dad - the lone male!

Mom arrived last night, safe and sound. Dad is still doing just great. We've been busy and having a good time enjoying each other's company. He's been very active and taking a good walk each day. He seems to me to be doing well. Yeah dad!

Craft time!

Ava and her grandpa worked together on some craft projects. Ava had fun coloring while dad drew her some birds.

Dad also had his first Tai Chi class today. Should be a good addition to his therapy. He enjoyed it and is looking forward to the next class on Thursday.

Beautiful Sunday

Today we thoroughly enjoyed our sunny spring weather! Dad and I took a walk with Ava this morning, then we headed out for lunch and a tour of the Harbor District. The Harbor is our version of the Waterfront Park, but on a lake. It has shops, restaurants, a cinema, fountains, docs, a lighthouse, a brand new Hilton, a small outdoor concert venue and plenty of room to stroll and enjoy a perfect sunny day.

And of course, Miss Ava could hardly leave her grandpa alone. During our walk, she had to make sure that he was right beside her the whole way. She cried when I told her that she needed to be gentle with grandpa and she couldn't climb all over him like a jungle gym! But she found a way to steal some snuggle time and was pleased as puddin'. Watch out grandma Rhonda! You've definitely got competition now!

In other news, mom (who's working her tail off wraping up the move in Phoenix!) is just about ready to go. All is packed up and off with the movers. Tomorrow is a day of rest with Laura, then she's off on her journey with Aunt Louise and Theresa. She should be here Wednesday or Thursday. We're supposed to get thunderstoms starting Tuesday, but hopefully they can avoid any crazy rain while on the road!

Smitten like a KITTEN!

What a day! Ava has a new best friend....her grandpa! She can hardly leave him alone. She warmed up to him real quick and spent the day glued to his side.

Dad had a great flight and was waiting for me (!) at the gate. Dressed all spiffy for travel, he was ready to go and check out his new home town. He had a good day and seems happy to be here and is enjoying his bit of rest before the chaos resumes later this week.

THANK YOU!

Mom, Jenny & Sony, Jose, Cindy, Betty & Neil, Shelby and Lori..... Thank you so much for your donations to our Relay for Life efforts. Your kindness and generosity means so much to me. I'm getting closer to my goal! And thank you to everyone that has pledged their prayers and support for our family. I am so grateful.

I am 58% of the way to my goal of $500! Woo hoo!

Relay For Life

http://main.acsevents.org/site/TR?px=5271757&fr_id=6311&pg=personal

Just a reminder, I'm in the last few days of fundraising for the upcoming Relay for Life event for the American Cancer Society. If you can spare a few dollars to help me reach my goal, click the link above and follow the instructions to make a donation online. Thank you!

Dad arrives Saturday at noon! Lots of updates and pictures to follow!

We love you Bo!

Grandpa x2

Yes, dad is going to be a grandpa again! Yippee!

He'll be here a week from Saturday, so I'm busy getting ready. Mom will be here about a week after. More updates and pictures when he arrives!

Sad day

Just a quick note that today mom and dad's little dog Beau had to be put down. He was really sick and was really having a tough time. The last few weeks have been very tiring for mom and dad, but hopefully this sad time will fade as they continue to make their way towards their new home out here in Texas.

Relay For Life

I signed up to participate in the local Relay For Life, a fundraiser for the American Cancer Society. You can check out my fundraising web page at http://main.acsevents.org/goto/darcy.rocha. Thanks!

Oh Happy Day

Even though Palm Sunday is a solemn day, I have fantastic news to report. Mom and dad have an accepted contract on a home here in Rockwall. It's even WAY better than the one they were supposed to get a few months ago. This house, and the neighborhood, couldn't be more ideal. I know they are going to love it. There will be so many things to keep dad busy, too. It has a nice yard with a big covered deck, a creek that runs behind the house, an adjacent green belt, walking paths through the neighborhood, parks, a community pool, and access to the lake. It's in a private neighborhood that also is home to a local private yacht club. It's only 4 miles from our house. The house is just the right size and the floor plan is perfect. Attention Oregonians, start making your travel plans now! It will be so great to have visitors!

A-ok!

MRI today was clean as a whistle, including perfect arteries in the brain. Hygroma is holding steady, but is no worse. They don't anticipate any treatment for it. Dr. said he was doing amazing and he won't need another MRI for 4 months. Way to go dad!

In other strange twist, Bo, mom and dad's 14 year old Bichon, is having seizures. Maybe dad will have to share some of his anti-consulsant drugs with him...

Stumble

Dad had a little stumble yesterday when he was out front by himself. He tripped and fell into the gravel in the front yard. And even though he is now better able to get himself up when he kneels down (or falls), since he was in the gravel he couldn't get up. He fell on the ring of keys he was holding, which included the truck key with the panic button. Apparently it made the truck horn start blaring, so mom came out to see what was going on. I kind of imagine dad like a little beetle stuck on his back, not able to right himself. So mom, with all her might, was able to help him up. He wasn't really hurt, although he has a little bit of a sore back. When I called today to check in, he told me the story. He is much easier to talk to on the phone now, except for the long pauses when I wonder if he's checked out of the conversation. I have to remember to be patient and let him finish because now he will, whereas a few months ago he would stop mid-sentence and just kind of check out, forgetting that we were having a conversation. For most of the past 20 years, I remember him being kind of slow in conversation. But I can definitely see how that's been exacerbated by the last 2 surgeries.

On another note, I forgot to mention that our wonderful family friend Caroline took almost a full week out of her busy schedule to go to Phoenix to visit with mom and dad. I know that dad holds a special place in his heart for Caroline and it meant a lot to my folks that she came. She was very motivating to my dad and was able to give them lots of pointers about selling the house, since she is a PRO realtor. :)

Therapy Graduation Day

Today dad was "graduated" from the out-patient rehab hospital. We had just integrated him back into their system and he went through all the evaluations as necessary to start back up. Apparently he scored very well on all of them and the therapists felt that his needs had been served and he can keep up his daily therapy activities himself at home. Frankly I was a little surprised that they wanted to cut him loose, but we can certainly add this to his list of accomplishments.

Still no word from Barrow's interdisciplinary tumor board as to what they found on his last CT. Supposedly, Dr. Short-on-Words Neurosurgeon was not at the meeting, so they were not yet able to review his case. (Don't worry about Dad people...take your own sweet time.....*sigh*) His next MRI is scheduled for Wednesday and will include an arterial scan. This will be immediately followed by an appointment with Dr. Neuro-Oncologist who will personally review his scans and hopefully report more good news.

In other real estate related news, mom and dad have had another offer bottom out on their house. As with the last, the potential buyers lost the sale of their own home, bringing everything to a halt. Fortunately, this happened early on this time. A final counter offer had yet to be executed. One of these days they'll get out here to Texas....

Status report

Still no definitve word about the finding on the last CT, but we're on the countdown to MRI on the 12th. Hoping all is status quo. On the bright side, he's been integrated back into the rehab system.

Update

Over the past few weeks, dad had been having some motor skill issues when he would get tired. Mom says that, for instance, after about half-way through their walk through their (tiny) neighborhood, he would start slouching over to the left and needed her help to make it home. But, mom says that he seems to be doing better recently, and he says he feels better. None the less, he had a CT scan and an appointment with Dr. Neuro-Oncologist today. Here's the shakedown:

1. The CT shows a *possible* clogging/blockage of the main artery that supplies blood to the brain. She will present his scans at the Barrow (BNI) tumor board tomorrow where all the specialist docs will discuss and make recommendations.
2. His next MRI, scheduled for March 12th, will include a closer look at this artery.
3. She feels that it poses no immediate danger.
4. She is encouraged by his progress and feels he is doing well.
5. The hygromas (fluid-filled area in the tumor cavity) may be doing a bit better.
6. He's been given orders for a whole gamut of blood work to make sure everything is A-OK.
7. She has started the ball rolling for him to re-enter rehabilitation, which was shot off course when they were going to move.

I'll post more tomorrow, when hopefully we'll have a bit more information from the tumor board.

(Maybe I should have given up worrying for Lent....)

PS- The post below was actually a short essay I wrote to be included in a collection of brain tumor experiences. A woman in the BrainTrust online support group is compiling stories from different perspectives, and is hoping to have them published.

The Dichotomy of Dad

di·chot·o·my - Division into two mutually exclusive, opposed, or contradictory groups: a dichotomy between thought and action.

“Count my staples.” That was the first thing I remember him saying to me when I arrived home from camp. His craniotomy was a few weeks prior, but I’d been shipped out until then. I was so scared and nervous to be near him. And here I was, just barely twelve, anxiety-ridden and alone with dad. Our relationship had always been difficult –marred by irrational anger and frustration.

His full head of thick, almost black hair was half gone, replaced by a fresh scar spanning practically the entire width of his (former) hair line, covered in railroad track fashion with large staples. The red gash above his eyebrow was still visible, the remnant of a seizure that brought his strong frame tumbling down to the edge of a pool. I can still remember looking in his eyes and trying to talk to him to see if he was ok and again they fluttered back into his head and he fell backwards, coming out of it moments later with only a slight concern that something was wrong. My sister and I had missed the first big event that marked the discovery of the right frontal lobe brain tumor – a grand mal seizure in our living room. My mom thought he was having a heart attack and pounded on his chest so hard he was sore for quite some time, and the incident was thereafter told comically over and over again, to mask the unrelenting anxiety that pervaded our household.

And so marks the beginning of my journey with my dad’s brain tumor…or at least the point at which he was diagnosed. As far back into my childhood as I can remember, my dad was angry, tense and unable to show us love in the ways we all desperately needed. We were afraid of him, partially because we had developed hyper-sensitive tendencies and partially because we never knew what to expect. I vividly remember being so afraid and anxious when I would hear his car pull into the driveway after work that I would automatically try to run and hide. I had panic and anxiety attacks starting at about age 7 and always felt abnormal, especially being around other "normal" families. Back then we had no idea what a profound affect his tumor was having on his personality, cognitive abilities and emotion, and the mark it would ultimately leave on our lives forever. In all likelihood, the tumor had been present and growing since his childhood, only symptomatically expressing itself through seizures when he was 42.

My dad recovered from his first craniotomy remarkably well and was back to work in a few weeks. He tolerated his doses of radiation, although his gorgeous mane never would return, leaving his large, unsightly scar on display for the world to see. Every once in a while he would struggle to find a word, and would jokingly say that “they must have took that part out.” Life continued to be stressful and family life plodded along unhappily, but we all buried our heads in the sand and pressed on in denial until the tumor (or lack thereof) became an after-thought. Ten years and more passed by and we learned to forget the tumor.

As I became an adult, my relationship with my dad improved by strides, especially when I moved out of the house. I looked less at him as an adversary and more as a kindred spirit. He had lost his own father at the tender age of 11, the only person that he seemed to truly love and respect. I knew that deep down he felt a similar love and respect for me, even though it was hard for him to express. We found companionship in our ideals and I made the investment in fostering our connection. Still, times with him could be very difficult – his frustration at simple stressors would make him very uncomfortable to be around, not to mention the embarrassment of some of the inappropriate things that he would say to our family or even strangers.

At the end of 2004, 16 years after his original diagnosis, the seizures returned suddenly. Emotionally I felt like I had slammed against a brick wall. I had let his disease dwindle to a faint memory, something I never thought I would have to meet face to face again. He endured his second brain surgery, but this time it left him dampened enough that he had some noticeable deficits and would never be able to return to work. Although it turned out the seizures were being caused by a build-up of scar tissue in his brain and not a new tumor, it was just as traumatic to his body as if it had. I adopted a new motto, “MY DAD IS MY HERO.”

As the months passed, things improved, slowly but surely. My dad walked me down the aisle. He held my newborn daughter, his first grandchild. We became closer than ever.

In the summer of 2007, he was back in the ER with uncontrollable seizures, this time forcing his delicate brain into a seizure coma – status epilepticus. The only way out was another surgery. This time he couldn’t escape the tumor. Oligodendroglioma grade 2.5, scoring the exact same ranking as it did 20 years prior. The surgeon successfully removed all of it, but leaving him with almost his entire right frontal lobe missing. It took him weeks to come out of the coma. It took him months to regain enough strength to leave the hospital. It will continue to take him years to recover, although I’ve come to accept that a lesser degree of recovery might have to be accepted.

But fortunately I am an adult now, and not a child. I have control over the information and knowledge I can attain and the role I play in the process. And as an adult I can see this experience from many angles, not just the childish victim of a brain damaged parent. I can appreciate the blessings that can be gleaned and understand the gravity of what may possibly lay in the future.

My dad is a dichotomy –a sensitive, intelligent and appreciative person encased by his brain injury. The beautiful parts that I know are there are often opposed and overcome by the ire, frustration and rough language. Through knowledge and compassion I find the patience and clarity to love and be loved, for which I am truly grateful.

Status quo

Mom snapped this on a cool day when dad was bundled up outside reading, of course. She can barely tear him away from his books to do his home therapy projects.

He is still in kind of a holding pattern with the therapy because since he was officially discharged in preparation for the move (that didn't happen) it is a long, bureaucratic process to get him back into the system. He basically has to start from scratch (referrals, assessments, etc.) which is a waste of time and money, so they're kind of holding out for a possible move to happen in the near future, then the tedious start-up to therapy can begin here.

Good reminder

Functions of the brain's frontal lobes (cerebral cortex):

-How we know what we are doing within our environment (consciousness).
-How we initiate activity in response to our environment.
-Judgments we make about what occurs in our daily activities.
-Controls our emotional response.
-Controls our expressive language.
-Assigns meaning to the words we choose.
-Involves word associations.
-Memory for habits and motor activities.


Possible problems related to injury of the frontal lobes:

-Loss of simple movement of various body parts.
-Inability to plan a sequence of complex movements needed to complete multi-stepped tasks, such as making coffee.
-Loss of spontaneity in interacting with others.
-Loss of flexibility in thinking.
-Persistence of a single thought.
-Inability to focus on task.
-Mood changes.
-Changes in social behavior.
-Changes in personality.
-Difficulty with problem solving.
-Inability to express language.

Sounds pretty familiar, huh? Just a reminder that dad has been a victim of brain injury to his right frontal lobe and has been since this tumor started invading his brain....which (considering the type of tumor it is) most likely was decades before we even first learned of it.

Moving setback

I'm sad to report that the move is not going to happen at this time. The buyers for mom and dad's house have had to back out of the deal, because the buyers of their house lost their financing. So that means that mom and dad have had to back out of the deal on the house here in Texas. It's really a shame, but hopefully they will have another contract soon, one that won't fall apart in the end. Unfortunately, it's just one of the things that can happen in real estate, especially in such a delicate market as this. Mom is going to try to get her job back, all the plane tickets have been suspended, and dad will be getting his caregiver back. We'll be patient and remember that what matters most is that dad is still doing ok. Everything will fall into place when the time is right.

Update

Dad's last therapy appointment in Phoenix was today. He is supposed to be on a flight to my house next Wednesday. I say supposed because there has been a slight hurdle to overcome with the move. I don't want to say too much, but we're hoping that everything can resolve itself and mom and dad will still be able to make the move here at the end of the month.

The therapists say that in order to re-start therapy here, we'll have to jump through all the hoops again, but they say he is making great strides and will continue to get better. I'm curious to see for myself. I've got everything all set up for him and Ava's looking forward to having her Grandpa read her stories. :)

I'm on the dad countdown. He'll be here on the 23rd. I can hardly wait. Mom and Bo will be here around February 1st.

Nothing new to report. Still the usual roadblocks - poor short-term memory, weakness, etc. He's still working hard every day though. As soon as they get settled, he'll pick back up his therapy over here. And as soon as he steps into our home, he will be working on his in-home therapy activities! (With the company of his little granddaughter of course!)

Git Along Little Doggie...

Just so you're all up to speed, mom and dad's house has sold and they have an accepted offer on a house out here less than 10 miles from our place. If all goes well, they'll be here by the first week of February. Dad's docs have all given him the ok to relocate and start up with new docs here in Big D. Plan is that dad will fly out here in a few weeks and shack up at our place, then Jose will fly out there to help mom with the drive.

Dad did very well over the holidays and despite overdoing it in the hot tub once, he's back to making progress. He told me that his therapists were commending him on his good work. He did go on to say something about one of the gal's big b**bs, but we've gotten used to dad's off-color remarks over the years and chalk it up to brain injury...or just acting like and old man. :)




Sony, Jenny, Mom and Dad

Sony, Jenny, Mom, Dad, Louis and Maria

No surgery!

Good... no GREAT news. Dr. Neurosurgeon says that surgery to drain the hygroma is unnecessary at this juncture. The plan is to continue to monitor the fluid build up during his regular MRIs. Currently, it looks no worse so he's comfortable with the watch and wait protocol. He gave dad the green light to move to TX and get acquainted with new docs here that can monitor his condition. Whew!

Doing good....

MRI is tomorrow at 6pm MST. Dr. Neursurgeon consult Friday. Could use your prayers and positive thoughts for dad. We're hoping the the hygroma is stable or better and he might be able to avoid another surgery at this time. PLUS, if he doesn't need surgery right now, it will make their upcoming move to Texas easier and quicker.

He had a routine evaluation with all of his rehabilitation therapists yesterday and they say that he is back on track and is improving. The last evaluation he had, just before his first post-op MRI, revealed that was showing regression is his rehabilitation. Those tides seem to be turning! Yippee!!

Two-steppin' to Texas...

Mom and dad are two steps closer to Texas... they have a contract on the house. More details to follow as things progress. If everything goes smoothly, they should be here by the beginning of February. Dad seems well lately, so we're hoping that the hygroma situation is stable and not going to cause further problems. Should have more details on that at the end of the week. MRI scheduled for Thursday.

Still waiting...

The verdict is still out on the hygroma situation. As far as I know, there will be another MRI and a face to face with the neurosurgeon around the 21st. But dad seems to be doing ok, so we're ok with the current holding pattern.

In other news, mom and dad are still in the process of trying to sell there house. Hopefully (fingers crossed) a buyer will settle on a good price and they can start heading out this way. Can hardly wait. :)

Argh.....

Still waiting to hear what the Drs. plan to do about the hygroma situation. Could be surgical, which we're not too happy about. But before we get freaked out, we're waiting to hear with Dr. Neuro-oncologist and what Dr. Neurosurgeon have to say about it. The tumor board agreed that it is a hygroma, not a hematoma (cerebral fluid, not blood). Our thought is that since the surgeon is being consulted that of course he's going to say surgery...that's what surgeon's do! But again, trying not to jump to any conclusions or put any carts before any horses before we have more info.

Trying not to be a Debby Downer, but dad is more tired, less verbal, more confused and more depressed, all of which could/can be contributed to the hygroma. This is hard to handle. I like steps forward, with no steps back. I wish more than anything that he could be happy, peaceful, unafraid. It makes me sad to think of how he must be feeling. We talked on the phone today and he was definitely not himself.

BUT, mom reminded me yesterday that we need to remember that dad is only 4 months into his recovery, and 4 months post 2nd craniotomy, at Jenny's wedding, he was still pretty loopy. I remember being in tears at the reception because his mental and physical state was difficult to accept, and one too many people had commented about how he "just wasn't the same" and I couldn't bear to hear it. But then I got married 5 months later and my dad walked me down the aisle (more like the brick walkway in my backyard) and danced with me in the rain on our patio for our father-daughter dance to "My Girl." He was in a great place at that point and I was so happy. Our family was even more joyous when just a few days later I learned that I was pregnant with Ava. I digress, but it makes me smile to remember how happy we were. I'm very proud that I could give my dad such a wonderful gift - to make him a grandpa. And he loves Ava so much and he's so sweet with her. These are the joyous gifts that I should remember at times such as these.

More info

The brain fluid issue is called subdural hygroma, I think. Here's what I found online. I read that it can arise as a complication from craniotomy. I will be glad to hear from Dr. next week how they plan to treat this. Oye.

Tonight I set up our (faux) Christmas tree. It reminded me of the many times I went with dad to cut down our own tree, an Oregon ritual. That was always fun. Once we got it home, it was dad's job to put it in the base (for which he had invented his own system that included rocks, a two-by-four block and a drill!) and put on the lights. Of course, being the perfectionist that he is, the tree was always very solid, perfectly straight and lit precisely and evenly!

All Clear

MRI today showed no new growth. Dad's in the clear. Dr. said that they're a little concerned about a build-up of fluid around the brain, and will discuss with the tumor board at Barrow. We'll know more about that next week, but she said not to worry about it too much. Rehab staff reports that dad has regressed a bit in the past few weeks. Dr. today said that may be due to the fluid issue. The important thing here is that there is no new tumor. WHEW.

On another note, I feel like my postings are reducing dad to his tumor- meaning I need to honor him for the man he is, not just a brain tumor victim. We all have wonderful stories and memories of dad, so I'd love to share those, if you're willing to share them with me. I'll start.

My dad has always been one of my biggest supporters. Maybe back in the highland dancing days his support came across in a way that didn't really translate well with a child, but as I grew, and we grew closer, he showed me how much he cared for me by caring about the things I was doing - choir, pageants, Irish dancing, PR, PSU, etc. He was my "date" to my inauguration into Golden Key National Honor Society. He wrote me my own rap song and left it for me backstage at Miss Oregon. He came to church (I know!) to hear me sing. He even attempted to learn to dance at one of my Irish dance lessons at the Irish Bank (poor mom!). And once he sent me an email from Tucson after I had a breakup that was a want ad that he wrote for me....to find a new boyfriend. It was really funny, but the greatest part of it was that I could tell that through his humor he seemed to really understand me and was proud of me.

Now I want to hear from all of you. I want to collect thoughts on my dad so Jenny and I can understand him better, and so we can celebrate dad for being more than just the "guy with the tumor!" Email me at darcyrd@hotmail.com.

First follow-up MRI is tomorrow at 2pm MST. Appointment to evaluate results with Dr. Neuro-onlcologist with follow immediately. Dad's a little nervous, but we're confident everything will continue to be Okey-Dokey. :)

Chicken soup....sort of

Dad fell again yesterday. Although he was not injured, it was discouraging for him. He sounds a little down, so since I can't be there to give him a hug or make him some chicken soup, I'm sending my Ava's sweet laughter to cheer him up. I love you dad. Keep up the good work. :)

Lucky Lowell

Even though I am sad for the ways in which my dad (and our family) has suffered because of his brain tumor, I am continually reminded through my interaction with others with brain tumors that dad is in reality extremely lucky, or blessed, or however you want to characterize it.

Being a part of the Brain Trust's on-line support group for people affected by oligodendrogliomas has been eye opening....and this is a group only for this certain type of tumor, not all brain tumors (ie the really bad one, GBM - glioblastoma multiforme). Dad is the anomaly of this group. No one (that I'm aware) is a 20+ year survivor. At times it's hard for me to be a part of this list because, quite frankly, it can be very scary and depressing. But I'm understanding more and more how fortunate dad is. Fortunate to only have a grade 2.5 tumor (on a scale of 1 to 4, 4 being the worst and fastest growing). Fortunate that the tumor is/was "close to the surface" in the frontal lobe (in that it didn't invade the areas that control his ability to speak, understand speech, walk, hear, etc.). Fortunate that he had seizures to indicate that something was growing (sometimes people are asymptomatic and the tumors aren't found until it's too late).

This glass is definitely half-full.

And, more importantly, I'm pretty sure dad thinks it's half-full too, and that certainly has not always been the case.

Dad looks so happy. Nothing's as good for your health and soul as your best friend.

They had a great time at the crater. Said it was too big to take pictures of.

Happy (belated) Veteran's Day dad!
(For those of you who don't know, my dad signed up for the volunteer draft during the Vietnam war and served his time in Korea.)

All's Well

Just a quick update to let everyone know that everything is going really well. Dad called me himself last night (on his cell phone even) to tell me that he was doing "really great." He said he aced all of his activities in therapy and was very pleased with his progress. It makes me so happy to hear how upbeat he is.

Big news is that Randy is coming for several days on Friday. Mom and dad are really excited. Dad's going to try to convince Randy to go for a little day trip to the Beringer Crater. Dad's wanted to go there for a long time. In fact, mom and dad had plans to go there the day that dad ended up in the hospital. I only wish I could go too.

The problem with the medication seems to be resolving itself. He still has significant hand tremors, but he seems more alert and clear on the reduced med levels.

Countdown to MRI. Praying for more good news.

Healing power

Dad got his stitches (from the gash above his eye) out the other day. Mom says he's healed up terrifically. He heals very quickly....after each surgery, his incision has healed up very fast. Maybe these same healing qualities have played a part in his body's remarkable ability to keep this tumor at bay. Hmmmm.

He also met with the cardiologist yesterday. (Remember the heart issues he had while in ICU?) Dr. said that he will have to take the meds for irregular heartbeat forever, but the blood pressure meds he could now do without. You should see his daily pill box(es). It's a handful of pills.

He got his new glasses today. His previous pair were broken in the fall. So now he's all set up with new fancy specs. Kind of a nice benefit I guess.

Therapy update

According to Dr. Neuro-Psych, all of dad's therapy is going well and he is making good progress. His current therapy regimen will continue at least through December. Importantly, dad is very positive and has expressed his satisfaction with his progress. He says today he is feeling good. :)

Still no answers on the seizure medication issue, but mom's working on it.

Dad has a new full-time, permanent caregiver. His name is Joseph and him and dad seem to have really hit it off. We had a feeling that pairing him up with a man would be good for him. I think the camaraderie alone is wonderful, not to mention that this guy is really dialed-in to helping dad with his therapy. Win win.

Seizure (over)medication

Here is an overview of dad's seizure medications and how they are changing:

Was taking:

1. 2,000 mg of depakote
2. 2,000 mg of keppra
3. namenda (a memory enhancing drug used primarily for Alzheimer's patients)

The current plan:

1. drop namenda completely, cold turkey
2. decrease depakote dosage by 500 mg each weak until completely weaned off
3. continue keppra as is

This change in medication began 8 days ago. In the past day or so, he's started exhibiting some strange, possibly seizure-like behaviors. Mom's trying to get docs on the phone to find a possible explanation and remedy. I'm going to see if my new friends in the Brain Trust oligo online support group might have some insightful info for us.