Holding steady?

Life with two kids is hectic. To say the least. We've had recurrent ear infections and a big birthday party. Play groups and preschool. Shopping and cleaning. In the midst of our busy daily lives, Ava spends a lot of time with grandma and grandpa. I think it's pretty safe to say that going to grandma's house if Ava's favorite thing to do. It makes me warm and fuzzy to see the relationship she has with her grandparents, and the memories she will have of grandpa. He's quite sweet on Ava and Ian.

His last scan came back with no big surprises. The Dr. said she sees no changes, but I can't help but observe that things seem not as good as we would have hoped for at this point. He requires a lot of care, the kind that might make mom feel like she is a parent all over again. His balance is pretty poor so our fear of falls in constant. It seems like he's always got a big bruise on him somewhere. The Tai Chi class he's been taking for the last year have moved out of the area, so we've transitioned him to the YMCA for senior-oriented classes. They are a great fit for him. He now exercises 5 days a week! It's great for his health and for his morale.

And his 3rd grandbaby is due any day now (the 29th to be specific). I'm so excited for my little niece to arrive! Hurray!

My heart aches a little bit this morning. I have an unease about me that always associates itself with MRI day. As I post this, dad is en route from the MRI to the neuro-oncologist. I'll have this tense feeling until mom calls me after the appointment. I go through this every 3 months.

21 years ago, on April 21, 1988, dad underwent his first brain surgery at St. Vincent's in Portland. Mom mentioned it to me yesterday and my reaction was to pretend that I didn't hear it, or that it didn't matter to me. But of course the thought started tumbling around in my head, gaining momentum and emotion. Memories of that day, as much as I might have tried to suppress them, make me feel vulnerable, scared and a little anxious, just like it did back then. I think I tried to stifle these feelings for a LONG time, but now I've tried to embrace what's happened and is happening to my dad and meet it head on, with a weird sense of confidence that helps me sleep better at night. And for the sake of my effort to heal myself of these uneasy emotions, this is what happened, as best as I can remember.

I went to school that day. Good old mom, trying to give us some sense of normalcy and mitigate our anxiety and stress, which for her was almost unbearable. Because we were trying to be so "normal," I think some people may not have realized what a tremendous impact this was making on our lives. I just remember coming home from school and talking to mom on the phone and her saying something about "cancer" and "they probably got it all." Cancer? When had anyone said anything before about cancer? No one had discussed with me that a tumor in the brain could be cancer. That word was so scary because we had just found out that grandpa had lung cancer just a few months earlier. And sometime in that same school year grandma Barnes died from pancreatic cancer. First open casket funeral. Tough stuff on a 11/12 year old. But little did we know back then that brain tumors, whether malignant or not, are devious, nasty growths that destroy the essence of a person and nearly always return to wreak more if not greater havoc in the future. We took "probably got it all" as license to try to forget about brain tumors and believe that we would never have to think about it again. How naive really.

I never did go see my dad in the hospital. It seems like he was there for weeks. I think I had one chance to go, but I was too scared. In the course of his recovery, I went to British Columbia with my dance studio for a highland dancing camp/festival/workshop. It was really fun, but I missed my family. When I got back I turned right around and went to Outdoor School (6th grade school camp) for a week. It was my first experience with camp and I loved it greatly. But when I got back, on a Friday afternoon I think, I walked myself home from school with my sleeping bag and camp pack in tow, and returned to my dad, alone, at home. I hadn't yet seen him and this was a little overwhelming. Since the previous summer of his first few seizures, I was always afraid that he would have a seizure again in front of me or while he was driving me to dance class. It's a horrible thing to be scared of your own parent like this, and I'm ashamed of it, but nothing less can be expected of an anxiety-riddled little girl. I was so afraid of him that day. He looked so different - shaved head, pale(er than usual), a barrage of staples all the way across the top of his head holding it together with all their might, or so it seemed to me. He asked me to sit down by him where he was laying and told me I could count his staples. I think I did, just to show him that I was ok, but I really wasn't. I wasn't for a long time, and I think I'm still not. That day wasn't the end of his tumor, it was the beginning on his deterioration - slow and unnoticeable at first, but continually whittling away at a once strong man, in mind and stature.

I miss you dad. I miss the person you were and the things you did and the things you knew, even if you were hard to live with. You don't deserve this.

Should dad get a grow lamp?

Nice.

Marijuana Chemical May Fight Brain Cancer
Active Component In Marijuana Targets Aggressive Brain Cancer Cells, Study Says
By Kelli Miller StacyWebMD Health News
Reviewed by Louise Chang, MD

April 1, 2009 -- The active chemical in marijuana promotes the death of brain cancer cells by essentially helping them feed upon themselves, researchers in Spain report.

Guillermo Velasco and colleagues at Complutense University in Spain have found that the active ingredient in marijuana, THC, causes brain cancer cells to undergo a process called autophagy.

Autophagy is the breakdown of a cell that occurs when the cell essentially self-digests.

The team discovered that cannabinoids such as THC had anticancer effects in mice with human brain cancer cells and people with brain tumors. When mice with the human brain cancer cells received the THC, the tumor growth shrank.

Two patients enrolled in a clinical trial received THC directly to the brain as an experimental treatment for recurrent glioblastoma multiforme, a highly aggressive brain tumor. Biopsies taken before and after treatment helped track their progress. After receiving the THC, there was evidence of increased autophagy activity.

The findings appear in the April 1 issue of the Journal of Clinical Investigation.

The patients did not have any toxic effects from the treatment. Previous studies of THC for the treatment of cancer have also found the therapy to be well tolerated, according to background information in journal article.

Study authors say their findings could lead to new strategies for preventing tumor growth.

The bling-bling of chemo

Dad's latest round of chemo drugs arrived Fed Ex yesterday. And let me remind you that he's been put on this indefinitely.

Total value: $16,000.00

Yep. The drugs cost $16,000.00 for a 4-month supply. Swallow that.

Talk about the need for health care reform! Sheesh! Thank goodness they qualified for a grant from the manufacturer...otherwise....can you imagine? The choices people are forced to make these days...

Silly Sunday

Mom, Dad, Ava, Ian and I are spending a nice, leisurely Sunday together. Mom just got out an old box stuffed to the brim with letters and cards from us kids, dad and friends from over the years. One old card I made for her (circa like 1990) said, "This is one of those things I expect you to keep forever." I guess she took it pretty seriously.

She just pulled out this "press release" I wrote as a joke a long time ago. I guess it's still pretty funny, so I thought I'd put it here in case you think it's funny too.

###

For Immediate Release

MOTHER'S LACK OF EMAIL SENDS DAUGHTERS INTO TANTRUM
Severely bored daughters tired of seeing empty email in-box

February 6, 2001 - Portland, Ore. - Jennifer and Darcy DeBok, two intelligent, beautiful and talented women from Portland, are upset that their mother, Rhonda DeBok of Tucson, Ariz., has not sent them email yet this week. Unless the daughter's memories serve them wrong, mother DeBok may have a lot of explaining to do to the girls.

"I'm never wrong! I'm sure that she has not emailed me yet this week!" exclaimed Darcy DeBok, a world-renown PR pro and self-proclaimed princess. "It's quite possible that Mom has completely forgotten us and has now decided to give all her love to her two dogs, Old Decrepit and Mr. Whiz."

"If I don't get an email from her soon, I'm afraid that I will be forced to develop several other food allergies," said Jennifer DeBok, a technical recruiter that will soon make the leap into the newly founded un-tanning industry. "In fact, I think that without my mother's constant love and attention I will just have to pack up my trusty partner Sydney and move to Asia where I can finally fulfill my dream of becoming a small Asian woman."

The girls believe there may be several reason why their mother has yet to send them her treasured, and usually reliable, weekly email. Darcy believes that Rhonda has officially joined the Church of Costco, a sect that entices its victims by offering mass consumption of unnecessary but hard-to-resist merchandise. "I can already see her in the religious red-vested attire," said Darcy. "Although, I have a hard time believing she could find solace in super-sized dish detergent for long without her darling daughters."

The patriarch of this family is Lowell DeBok, self-admitted marginal dresser and work-o-holic, claims that the girls need to simmer down. When interviewed, Lowell was able only to step away from his new cactus obsession long enough to say, "No guts, no glory girls." Jennifer and Darcy fear that their father may be too wrapped-up driving and hauling "stuff" in his new pickup to recognize their mother's neglect.

Until their mother decides to return her attention to her daughters, Jennifer and Darcy will be waiting vigilantly by their email in-boxes, waiting for the moment that they will hear from their beloved mother. Until then.... No email = Bad Mommy!

For press inquiries only, please contact:
Darcy DeBok, Marketing Goddess, DeBok Communication, 555-Princess

###
(end transmission)

Daddy day care

As Ava says, we're babysittin' grandpa today! Since dad's not a Facebook nerd (like SOME of us!) I decided to pull one of these silly questionnaires that's going around and play 20 Qs with dad, and post it here. Mind you, the first response to pretty much every question was, "What?" I guess the one hearing aid wasn't enough today.

Enjoy!

WERE YOU NAMED AFTER ANYONE?
I think I was named after Lowell Rug, a guy in our town that dad knew.

DO YOU LIKE YOUR HANDWRITING? No, it’s terrible!

WHAT IS YOUR FAVORITE LUNCH MEAT?
It’s turkey and black forest ham.

DO YOU HAVE KIDS?
Ha ha. They’re not kids anymore! I don’t think anyway… I’ve got kids that have kids.

IF YOU WERE ANOTHER PERSON, WOULD YOU BE FRIENDS WITH YOU? Probably. Isn’t that just asking if you like yourself?

DO YOU USE SARCASM?
Yes.

DO YOU STILL HAVE YOUR TONSILS?
No.

WOULD YOU BUNGEE JUMP?
Probably.

WHAT IS YOUR FAVORITE CEREAL?
Probably sugar frosted flakes, but I probably shouldn’t eat them. Are you sending this into eHarmony, or what?

DO YOU UNTIE YOUR SHOES WHEN YOU TAKE THEM OFF?
I’ve taken them off without untying them before when I wanted to get to bed fast!

WHAT IS YOUR FAVORITE ICE CREAM?
Licorice. (Darcy: are you joking, or are you serious? Licorice really?) They make it! I always look to see if they’ve got it when we get ice cream.

WHAT IS THE FIRST THING YOU NOTICE ABOUT PEOPLE?
Probably their wit and their intelligence. (Darcy: And that’s why dad’s so nuts about me!!!)

WHAT IS YOUR LEAST FAVORITE THING ABOUT YOURSELF?
I wish I were bigger. (Darcy: Like taller?) Taller and heavier.

WHO DO YOU MISS THE MOST?
Probably “Bugs” Tour. He was a friend of my dad’s that came up every fall and went bird huntin’. And he always brought us kids something, a present of some kind. And he gave me enough money to buy a BB gun with a scope on it. He owned a tugboat for bringin’ logs into the mill into the valley. He owned a float plane. And he owned a Berreta shotgun.

WHAT COLOR PANTS AND SHOES ARE YOU WEARING?
Blue and red. A red and blue combination.

WHAT ARE YOU LISTENING TO RIGHT NOW?
You.

IF YOU WERE A CRAYON, WHAT COLOR WOULD YOU BE?
I’d be probably blue. The same color as my eyes.

FAVORITE SMELLS?
My nose doesn’t work anymore, so probably (well, I can’t use that one…), um, what, lobster and butter.

WHO WAS THE LAST PERSON YOU TALKED TO ON THE PHONE?
You.

FAVORITE SPORTS TO WATCH?
I guess college football.

HAIR COLOR?
Ahhhh, gray-brown.

EYE COLOR?
Blue. I’ve been told anyway.

DO YOU WEAR CONTACTS?
No, I did once but it was too much of a hassle.

FAVORITE FOOD?
Lobster and butter.

SCARY MOVIES OR HAPPY ENDINGS?
Neither. I like classic movies.

LAST MOVIE YOU WATCHED?
A terrible one. Fell asleep in it. Paul Blart Mall Cop. It was terrible.

WHAT COLOR SHIRT ARE YOU WEARING?
Quilted cotton blue and red flannel.

SUMMER OR WINTER?
Doesn’t ask about spring or fall? I like spring because it’s planting season and fall because it’s hunting season.

HUGS OR KISSES?
Both.

WHAT BOOK ARE YOU READING NOW?
Darwin.

WHAT DID YOU WATCH ON TV LAST NIGHT?
I was watching your Ghost Whisperer thing. (Darcy: Shhh! Dad! I don’t want everyone knowing about my nerdy, unnatural obsession with the Ghost Whisperer!)

FAVORITE SOUNDS?
My favorite sounds are “You don’t have to have chemotherapy anymore.” Said by a neurology doctor.

ROLLING STONES OR BEATLES?
I would say the Beatles. One thing I like about the Rolling Stones is that they’re still around, they’re still a group – I think anyway!

WHAT IS THE FARTHEST YOU HAVE BEEN FROM HOME?
Half way around the world. (Korea)

DO YOU HAVE A SPECIAL TALENT?
Can’t play any musical instruments…. Raising roses.

AGAIN? Yes, again.

ER twice in the span of 2 days. That's got to be some sort of record for dad.

Tuesday: MRI and neuro-oncologist
Wednesday: Fall and trip to Baylor ER
Friday: Dinner with Darcy and trip to Presby Rockwall ER later that night

[And yes, my first concern was ruling out that it was my dinner that caused this latest trip to the hospital. It was not the turkey bratwurst alfredo. I promise. (I hope.)]

As of this morning, he still in the hospital. It started with severe abdominal pain that took several rounds of pain killers to subside, so he was basically totally knocked out for 24 hours. They haven't been able to determine the cause of the pain yet, but he had an ultrasound early this morning that, in our estimation, will show some gall stones or something easily manageable, yet quite devious to the system. In other words, the Drs. say that this appears to be nothing serious. Hopefully he'll be able to come home early today.

What do you want to bet he'll be taking those treaded hospital socks home with him. I dare not venture to guess how many pairs are stuck in the back of his sock drawer.

Handsome little devil

I found these photos when I was going through boxes the other day. He was so adorable! Such a beautifully tanned little farmer boy. And the mole still lives on...

This picture was from 1st grade.

I think this photo was from about 7th grade.

Growin' up on the farm...

Maybe he was about 5 or 6 years old here? Perhaps one of my aunties might be able to better identify this photo.

The good, the bad and the bloody

The Good:
Yesterday was dad's MRI and neuro-oncology appointment. The quick and dirty analysis is that there is no change....and that's good news. The enhanced area on the MRI still looks the same, now whether that's tumor that's remaining stable and not growing due to the success of the chemo, or if it's something else like scar tissue, is still debatable. But for now, it's best to let sleeping dogs lie. He's tolerating the chemo well, they can afford it, and he seems to be well, then that will continue to be the protocol. The Dr. also agreed that his better balance and alertness lately can be attributed to the change in seizure meds back to Dilatin. (So that turned out to be a pretty good suggestion, Dr. Darcy!) He left the Dr.'s office feeling very strong and confident.

Then....

The Bad:
Dad had a pretty nasty fall this morning....alone....outside....walking the dog. "What the &#$#! was he doing walking the dog alone?" you say? That's another conversation. I'm ashamed to say he's fallen several times now outside alone and been "rescued" by neighbors. He gets a bug in him and feels like he's strong enough to go out alone... and he seems to feel this way when he's home alone, which are only brief moments between mom leaving and the caregiver arriving. This time there was a pretty bad blow to the head and lots of blood involved, and it was witnessed by the neighborhood security guard who called 911. The paramedics felt that there was "possible head trauma" so they made the call to transport him ALL THE WAY DOWNTOWN to Baylor Medical Center... instead of our new community hospital 3 miles from their house. When we finally got there, he was still immobilized and a little bloody, but no fractures. Amazing. His left hand is pretty badly swollen and bruised, he's got scrapes and cuts all over his face and hands, and his head and shoulders are painful; he may only have a slight concussion but no further injuries. This feels like a narrow escape.

(Obviously if was a while before we were notified of what happened [mom was in a job interview] so by the time we got there they had already done a CT, without talking to us first and getting his full history [I know, it's kind of physically obvious... head scar and all...]. I imagined the radiologist looking at the CT and thinking, "Oh my god! He's got a gaping hole in is head! Call the neuro team stat!")

The Bloody:


Notice the white garb. The EMS cut ALL of his clothes off of him - coat, socks and all. The only thing left intact was his hat. So they sent him home in this jumpsuit, that looks like a paper Hazmat suit. He's saving it.... because Dad DOESN'T GET RID OF ANYTHING!

Grandpa....x 3!

If you haven't heard yet, my sister Jennifer is expecting a baby(!!!). At the end of May, the DeBok clan will grow again. She is having a little girl, Ella Shivani Syamala. Beautiful. I can HARDLY wait to meet her. Ava is excited (we ALL are excited) to be welcoming a new baby girl into our family. Happiness continues to exude from mom and dad.

Jenny at about 17 weeks

Dad's next MRI and visit with the neuro-oncologist is Tuesday the 20th. This is an important visit as this will be the first look at the new tumor area since he started the chemo a few months ago. Most people that interact with him have mentioned that he continues to seem better lately - more alert, easier to talk to, better balance and movement. My theory is that this can be attributed to a) a slight decrease yet again in seizure meds (dilatin) and b) that the chemo is working and the tumor area has shrunk, alleviating pressure that had been building near the motor strip of the brain, which was possible causing his weakness and falling.

I like my theory.

Here is dad with Ava at our weekly Friday family night. Their affinity for one another is regularly apparent and makes my heart swoon.

Still going well...

Dad's been through several rounds of Temador now. 5 days on, 9 days off. He spends the first day of feeling sickly, but after that he seems fine. He has continued to seem more alert and sharp. They reduced his dilatin one more time, so he seems to have settled into this lower dose well. He's still attending Tai Chi and physical therapy several times a week. I think we all feel that he's holding pretty well at this point. The next big road marker will take place in a month or so when he has another MRI. If the Temador is working, the tumor will be the same or smaller. We are very hopeful and positive that this will be the case.

Have a blessed holiday!

Happy Grandpa

Good news to report. Dad is doing great so far on Temador (oral chemo). He takes it for more or less in alternating 1-week cycles. He finished his first round completely unscathed. No nausea, no excess fatigue. In fact, he has seemed a bit more energetic and downright chipper lately. I don't know if he's processing it well or if his lack of short term memory is keeping him blissfully unaware, but he seems rather upbeat lately. No complaints here.

Baby Ian received his sacrament of baptism this past Saturday night. We had a small private ceremony with mom and dad and Ian's Godparents, Shelby and Selso. The baptism was performed by our dear friends, Deacon Jim and Diane Daniels, who performed our marriage convalidation. It was sincere, moving and spiritually refreshing. Baby Ian was absolutely precious. Pictures will follow soon hopefully.

What makes this event that much more interesting is that dad has admitted to being fond of Deacon Jim - a "man of the cloth" mind you. For those of you out of touch with dad's religious preferences, well, there are none. In fact, I'd go as far as to call him an atheist. It has been my understanding over the years that dad finds religion to be something only for the narrow-minded and unintelligent. He has no concept of spirituality. This has been the center of many a heated a debate between the two of us back in the day. With that said, it makes his interest in Jim that much more remarkable. I see it as a blessing that my dad can not only find friendship in a wise, interesting, educated man like Jim, but that he can see that someone with the traits he holds in great esteem can also go hand in hand with faith. I see a window opening here and it brings me great comfort.

And talk about a blessing..... It turns out that dad has received a grant from a program of the chemo drug company that is going to cover his astronomically high co-pay for the Temador. Otherwise they were looking at a $700-$800 a month expense to get dad this life-saving drug. And the grant is good for 2 years! If the tumor responds to this drug well, he could be on it for years. I still think that pharmaceutical companies are somewhat inherently evil, but in this case, we are so grateful for their charity.

*$&!#ing brain tumor

I was hoping that I wouldn't have to relay news like this for some time, at least a few more years. But here we are, back in the battle once again. Dad had his usual 3 month MRI today. Unfortunately, there seems to be an area that looks to be new tumor. He starts on Temador (oral chemotherapy) tomorrow. The positive news is that the "area" looks to be small and slow growing. He'll be monitored via MRI more frequently. I'll post more when I have more details. At this point, I'm just trying to digest this news and get a little more grounded.

Ian Manuel Rocha

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!