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.