Dad had a date today...with his new nurse. Mom's ok with it. I could make a joke here about Big Love, but I won't.

Mom says she's really nice and reminds her of Molly Gilpin. How's that for a blast from the past? But I've heard that those of you who know Molly aren't down with the Internet anyhow...fogies! (Couldn't help but to make that jab...)

M & D ventured out for a few errands today (I'm still surprised about that). Mom said dad didn't even use his walker at all the whole day.

I'm anxious to get there and see for myself all of this remarkable progress. I pledge to upload many photos and relay great tales of courage, perseverance and familial pride.

Oh, and dad gave mom a little pinch on the rear, so that confirms that life is returning to normal. AT LEAST IT WASN'T THE NURSE!

The Return on Lowell

HE'S HOME.

DAD IS HOME.

MOM IS HAPPY. BO IS HAPPY. ALL IS WELL.

Dad arrived home early this afternoon. He called me to tell me of his arrival and sounded GREAT on the phone. He's getting around well and requested roast beef for dinner. Mom spent hours at the pharmacy trying to navigate the insurance "nightmare" while their friend and neighbor stayed and visited with dad. He took Bo and walked across the street to get the mail...by himself, with mom supervising of course. But, WOW. Seems like a small thing, but this is a major step toward independence.

He starts his therapy Monday, and will only be three days a week, not daily as I thought it would be.

Mom briefly showed him this blog. At some point I guess he'll sit down and read it. Funny, but over the course of documenting this experience, I failed to think of what it would be like for dad to read my thoughts and the details of what happened. It might be a little awkward, but I hope it helps him better understand what he went through and how we felt about it. It's interesting that something that started as a necessary dissemination of information has evolved into (hopefully) a step in his recovery.

What's so funny 'bout peace love and understanding?

Alright dad! Show us your enthusiasm.

Only 2 days to go, or, as dad corrected mom today, only a day and a half. He's out of the rehab hospital Saturday AM. Today he passed his final swallow test, which means that he is allowed to have all liquids, which had previously been restricted. Guess he'll finally get that Pepsi that he's been requesting for the past month.

Sunday will bring our first visit from the home healthcare aid. This person will be the one to help care for dad at home until he is totally able to do so for himself, drive him to his therapy appointments when mom is at work, and assist in any other way that is necessary. Mom learned recently that their job description includes "caring for the caregiver" as well, including housework and grocery shopping. They'll even take dad to the movies if he should so desire. All of this is welcome and greatly appreciated.

I wanted to also pass along that tomorrow morning my Aunt Mary (my dad's sister) is having a lumpectomy to remove breast cancer. It's a road I'm sad she has to travel, but we're confident that she's going to recover quickly and we pray that the cancer has not metastasized.

On behalf of my dad, thank you for the cards and flowers. I know these gestures mean a lot to him. I'm counting down the days until Ava and I make our trip out to AZ once again and I hope that little Ava will be a source of joy to dad, and not cause too much trouble while we're there!

(For a refresher on Elvis Costello's take on Peace Love and Understanding, click here.) :)

Dad's still on track for discharge Saturday. Mom's busy trying to get details in place, like getting him a walker just in case he needs it and interviewing potential care givers. He's excited to come home and I'm sure Bo is ready to have his doggy-daddy back.

In other news, dad still needs to pass one more swallow test to be cleared for liquids. Right now all his liquids need to be thickened in order to prevent any possibility of aspiration. Only a small hurdle that I'm sure he will clear with ease.

My goal is to draw on this present situation to learn more, support dad (and the family) better and possibly reach out to other families in similar situations. I had a great conversation today with a social worker from the Brain Tumor Society that oversees a program called COPE that matches up families affected by brain tumors. She's going to help us connect with other people who have had an experience similar to ours so that we might learn from them. I'm also looking into the T.H.E. Brain Trust and Grey Matters. Next week I'm going to try to attend a Dallas-area Grey Matters support group. This is the same group that organizes the support group in Phoenix that mom is making an effort to get plugged in to. Then it's off to Phoenix to see my dad!

Weekend Update

Did you like the "movie" (below)? I thought it was a riot. Hopefully dad will like it. :)

Dad had a good weekend. Mom has been busy beginning to make arrangements for his arrival home next weekend. Like I mentioned before, his out-patient therapy will commence daily. He will need someone to help him at home and provide transportation to his appointments while mom is at work. This means that they will be hiring a home healthcare provider. It's a lot of information to sift through, but mom has done a good job seeking out the best options for dad. And, importantly, he seems receptive to this continued care once he is home. Mom's already dealing with insurance chaos, but so far it seems to be under control. (I think that sentence is completely contradictory...)

I'm going to make an attempt to get plugged into some of the support groups here in Dallas. Grey Matters, a group that holds meetings all over the country, meets in the Dallas area at another Health South Rehab hospital, just like where dad is in AZ. Mom and Jen attended a Grey Matters meeting last month in Phoenix, at the neuro hospital where dad was treated. I think it's therapeutic for us all to be involved in these groups.

Comic Relief

Star in Your Own JibJab! It's Free!Yes, this IS what life is like in Texas.!

10 days

Target date for dismissal from in-patient rehab: September 29th, only 10 days away. Woo hoo! (Also, *heavy sigh*, because this means that although he'll be home, he still has a long way to go and needs a lot of care...)

I'm going to Phoenix in two weeks to help out. Even though he'll be home, he'll have a 3-hour daily appointment at the same rehab hospital to continue his therapy. Upon my departure, Jenny will come and take over. Then hopefully he'll be able to stay home alone and have therapists come to the house to continue, or we'll have to arrange for day-long in-home supervision by a CNA or something. Not quite sure what that would be. His doctors keep telling mom that basically someone needs to be home with him 24/7 and he needs to do all his rehab at a rehab facility (which is understandable), but this isn't exactly realistic because 1) Jenny and I aren't able to move in and 2) mom still needs to work. So now we're trying to find practical, real world solutions to this predicament.

Got to keep this short because I've got to go book my plane tickets and work on a little sewing project for dad. :)

Orchids so sweet

Jenny had asked dad a while ago what his favorite flowers were, fishing for ideas of what to send to him at the hospital. I think any one of us would have bet the farm that he would say roses. But instead, he said orchids. And my goodness - look at these! Beautiful orchids from his first-born. He was pleased as puddin'.

We talked again tonight. Apparently he was trying to tell me what he had for his meals today, but he talks so quietly I couldn't understand him one bit. Mom translated for me.... I guess he's been eating pretty much everything they've offered him, which is fantastic. And he's doing a better job of getting himself between his bed and wheelchair, and wheelin' himself around. I asked him if they're making him walk more and he said yes. Tomorrow we should have the oh-so-elusive target date for discharge from the rehab hospital, and hopefully an idea/plan of what his care/continued therapy will be once he gets home.

Yesterday he had a good conversation with Aunt Mary. Looks like they'll be bonding on a higher level now. The Cancer Club is not something you exactly want membership in. Unfortunately, she'll be joining mom and dad in that group, but, more importantly, we expect her to join the BEAT CANCER club very quickly. Tonight I'll say my Hail Marys for my beloved Aunt Mary.

Weekend Update

Short, but sweet.

Dad had a great weekend. Each day continues to be marked by progress. I talked to him today and this is the first time I can truly say that he sounded more like himself. It made me so very, very happy.

We should know his target release date by Wednesday. I'm hoping it will be soon so I can go to Phoenix and be with dad at home, instead of trying to keep Ava out of trouble while visiting him at the rehab hospital. But if we do go when he's there, Ava has her scrubs and stethoscope, so she'll be ready to play the part.

On a side note, congratulations to Randy and Debra on their nuptials. We all wished we could have been there to celebrate. Dad was very happy to talk to Randy yesterday. :)

Thursday

Dad's dinner was never so well deserved.

Today he passed his swallow test, with flying colors I might add. His reward was dinner - real dinner. Although he'll still have his feeding tube for supplemental nutrition for an undetermined amount of time, this is a huge step forward.

(This is a picture of dad with the flowers Jose and I sent him. He even called me yesterday to say thanks!)

Mom reported that the rest of his day was filled with equally-positive progress. He cycled on the exercise bike, walked more (with the walker, but that's only for balance until he's completely steady), worked out on the therapy stairs, and took a shower unassisted. Still do not have a definitely date for release, but one doc eluded that it might be sooner than we think!

In case anyone needs a quick recap of dad's history with oligodendroglioma, here it is. (Plus there's some info on the 2nd surgery that is pertinent that I keep forgetting, so if I put it in writing it will be more permanent.*)

1987/1988- Dad suffers a gran mal seizure and a growth is found on an MRI. Watchful waiting is followed by a few more "incidents" and marked growth on MRI. 1st craniotomy successfully removes all of oligodendroglioma grade 2.5, followed by several rounds of radiation therapy. Seizure meds required for years. He recovers so well that the brain tumor becomes an afterthought.

December 2004/January 2005- Onset of somewhat uncontrollable seizures leads to discovery of "area of enhancement" on MRI (growth). 2nd craniotomy reveals only scar tissue and some other damage to surrounding tissue as a result of previous treatment, but no tumor recurrence (leading us to assume that this was an unnecessary surgery that unfortunately had lasting effects on dad). Light therapy and seizure meds continue for about 1-2 years.

*I recently learned from Dr. Neuro Oncologist that the scar tissue that had grown into old tumor cavity- which we thought was harmless- was actually quite troublesome and in most cases always needs to be removed. It can cause nearly as much trouble as a tumor recurrence, pressing on delicate tissues causing seizures and other problems.

Present- Onset of left side weakness and uncontrollable seizures led to status epilepticus "coma." MRI again shows new "area of enhancement." Emergency 3rd craniotomy performed to remove source of seizures, which, left untreated, would/could have caused permanent coma/brain damage. Pathology shows recurrence of oligodendroglioma grade 2.5, although no further treatment is scheduled at this time. Seizure medications and therapy to continue indefinitely.

(I'm also recapping all of this info here in case another family affected by oligodendroglioma is out there searching the Web for information and could learn something from our experience.)

Wednesday

Sorry kids. No target date for release yet. Looks like we'll have to wait another week on those goods. BUT, they did say that it was going to be a matter of weeks, not a matter of months. After leaving the rehab hospital, he'll probably have out-patient or in-home therapy. We're going to milk it for as long as possible.

His speech therapist said that his swallowing seems to be improving, so the next step is the official swallow test at the regular hospital which will involve barium and a fluoroscope, which are quite fun. Mom will be there to witness it first-hand. If you've never seen one before, they are really interesting - kind of like a live-action x-ray. Remember those old health class films about the digestive system and they showed a kid eating a carrot and you got to see "for real" how the food travels down the upper GI? That's what I'm talking about!

I've heard from several people that they've tried to reply to these posts via the Blogger web site but have had difficulties. I just fixed it so you don't have to register to leave a comment....so comment away. You can always email me directly at darcyrd@hotmail.com. Also, just a reminder that dad has really enjoyed the notes sent via email. I know these really perk him up, so please, keep them coming!

Tuesday

I'm sure mom put him up to this. Dad's not really the pose-with-a-bear type. But he does look strong and happy. This bear was part of a gift he got from his Pilot Rock Class of '64 cronies. So very thoughtful. It will be absolutely fantastic if dad is up to attending the reunion next summer. I told him we would go a long for the fun and let Ava run around in the rolling hills of wheat....

When I was putting Ava to sleep tonight, I heard the phone ring, but since I was in the middle of our nightly reading (currently Ramona The Pest), I didn't get the call. Later, I checked the caller ID and called it back....and who answered....but....DAD! I nearly fell off my chair. He sounded good, better. He got a visit today from their old friend Jack Donaldson. Down in Arizona and stopped in to see dad. "An eastern Oregon boy," said dad. "He's from John Day." No historical details have escaped.

Docs told mom they are pleased that he is continuing to make progress. (It's when the progress halts that things become a little shady...) Today was more of the usual. Here he is yesterday working at some fancy therapy table. Laura (daughter-by-osmosis) visited him and kept him company for awhile. One thing's for sure - dad's never had a lack of women in his life!

Sunday

Well, seems the posts are starting to slow down a bit. I'm happy to report that I don't have much to report. No drama, no action, no news is good news. And doesn't he look GREAT in this photo! Happy dad.

Dad is slowly but surely making strides. And real strides, that is. He's been up and around walking with a walker with his therapists. The docs conference early this week and will deliver their target date for his release by Wednesday. It will be interesting to know how long they think he will have/get to stay there, because as of now we're still guessing...weeks? Months??

I talked to dad on the phone for some time today. Let me rephrase that. I talked AT dad today. He still doesn't say too much. Mom said that they watched the Oregon game Saturday (GO DUCKS) and he was unusually quiet. Let's be honest here - watching sports with dad is not known to be the most pleasant experience. There's usually a lot of yelling and cussing at the TV. So it was almost kind of nice for mom to be able to watch the Ducks with dad and not hear his colorful critique of their each and every move!

I think he's getting a visitor or two this week, which I'm sure he will enjoy. I'm kind of dragging my feet on making plans to return until I hear this elusive target date for release. It would be nice to be with him at home so I can help him more and he can spend more time with Ava.

In other health, he is still having a few issues which are making life uncomfortable for him. Hopefully the problems that have accompanied the feeding tube will resolve shortly. Mom says they're doing some sort of electrical stimulus on his throat area to help with the swallowing problems. So for now, he is still relegated to ice chips.

Much love - Darcy

Thursday

Mom and I decided that we too have brain fog.

We seem to keep forgetting what exactly things were like after dad's last surgery 2.5 years ago - January 2005. At times we are stopping to remind ourselves that some of the difficulties he is having now are the same or similar to what it was like post-BS (brain surgery) before. I guess I had forgotten how long it took him to get back to his old self. I forgot that I cried at Jenny's wedding in May (4 months post-BS) because he was so out of it. But then by my wedding in October (7 months post-BS) he was fantastic. We even had to margarita-police him that night! We were reminded today that the brain swelling can be an issue for 6 months, which plays a huge part in his current issues. A good read (and one that I apparently need to re-read) is I Had Brain Surgery, What's Your Excuse? by Suzy Becker. Check it out at http://www.powells.com/cgi-bin/biblio?isbn=0761124780 if you're curious.

They are going to put him back on a fancy Alzheimer's memory drug that he has been taking for some time, but hasn't been a part of his medical regime the past 3 weeks. Hopefully that will help.

Dad told mom today that he knew about the passing of Pavarotti. Some of you may know that Pavarotti was one of my dad's favorites and he even went to see him in concert once. But that was about all he had to say today. Mom said he was pretty uncommunicative, although his voice is sounding stronger. It's conjures up strange and uncomfortable feelings when you talk to someone and they don't respond back.

I have nothing witty further to say. I miss my dad.

Wednesday

Dad had a great day today. The therapists told mom that he's very energetic (more so than they expected), very cooperative and works real hard. They even said that he stood up for 10 minutes today at the "therapy table" and read the sports section. Of course, this doesn't surprise us one bit because we know what a determined, hard worker dad is. (And for some reason he keeps equating this whole experience with his Army days, so I think his military mentality is helping shore-up his obedience quotient...)



Mom got the go-ahead to take him for a spin in the sun, which they both thoroughly enjoyed. And yes, dad is smiling in this photo. (Dad's elusive "photo smile" has only been spotted a handful of times over the years...)

There will be another swallow test tomorrow, and the sooner he can conquer the swallow, the sooner he can shed the feeding tube/apparatus, which he's not too fond of. Swallow! Swallow like the wind dad!

How Could I Ask For More
by Cindy Morgan

There's nothing like the warmth of a summer afternoon
Waking to the sunlight,
and being cradled by the moon
Catching fireflies at night

Building castles in the sand
Kissing Mama's face goodnight
Holding Daddy's hand
Thank you Lord,
how could I ask for more

Running barefoot through the grass
A little hide and go seek
Being so in love, that you can hardly eat
Dancing in the dark, when there's no one else around
Being bundled 'neath the covers,
watching snow fall to the ground
Thank you Lord,
how could I ask for more

So many things I thought would bring me happiness
Some dreams that are realities today
Such an irony the things that mean the most to me
Are the memories that I've made along the way

So if there's anything I've learned from this journey I am on
Simple truths will keep you going
Simple love will keep you strong
Cause there are questions without answers
Flames that never die
Heartaches we go through are often blessings in disguise


So thank you Lord,
oh thank you Lord
How could I ask for more

Tuesday

Again, sorry for the delay. Can't quite kick this bug.

Today we heard from the staff that dad was "perky." That's right. Perky. Never thought I would hear that word used to describe my dad. Unedited. Intelligent. Introspective. Curious. Humorous. Willful. These describe my dad. I think it's very amusing and sweet to hear someone call him perky. Guess he likes them.

Our motto continues to be 'little by little, bit by bit.' Dr. Neuro-Psychologist says that they will put off some of the testing I was talking so much about in previous posts. She says he still needs to shake off some of this post-seizure fog he's in. But otherwise, the therapy regimen is in place and seems to be going well. Mom says it really tires him out and by the afternoon he's pretty much done talking, which he's not really doing too much of anyway. I have continued to talk to him on the phone, comprised mostly of Ava hollering in the background, which I'm sure is the greatest therapy of all. :)

Yesterday he had a visit from his grandson-by-osmosis, Jacobus, which I'm sure he really enjoyed. I think if he was up to talking more he would have made it into some sort of learning experience for Jac, something along the lines of "count the staples in my head," or some similar version that he made me do after his first surgery 20 years ago. (Alas, no staples this time and he's actually healing up quite nicely and quickly in that department.) All kidding aside, thank you Laura and Jacobus for visiting with dad and taking good care of mom. We love you.

Ode to Uncle Lowell

This poem was written by my cousin Sharee, my dad's niece. She gave this to me when dad was first in the ICU. We printed it out and took it to him and have read it to him several times. It's really sweet and is a wonderful tribute to my dad. I think it is very heartfelt and would love to share it with all our friends and family.

For Lowell

My uncle Lowell is one of a kind
of that we all agree
he's smart and funny and has a little bite
and he taught all of this to me

When I was only 3 or 4
he taught me how to dance
I thought he was so wonderful
on me he took a chance

Then one day after school
when I was 5 or 6
I missed the bus to home
and he saved me from the mess

When he met Rhonda and married her
and I was only 12
at the punch bowel was where I served
into their lives I delved

He learned how crazy girls could be
when they were almost grown
he learned he had no chance at all
with 2 girls of his own

He gave me lots and lots of advice
and some of it was good
He even liked my husband to be
and marry him I should

No-one will ever understand
how much he means to me
he's always been my favorite uncle
he's always filled a need

I feel that we are really close
no matter how far away
I feel that he was like a dad
in so many different ways

So thank-you Lowell for being you
and letting me be me
and teaching me and loving me
and helping me to be

Love,
your niece
Sharee

Weekend update

Sorry for the delay. I've been a little under the weather, and compound that with a toddler that's not sleeping too well, and you've got a recipe for exhaustion!

On Saturday, dad was transported to the new rehab hospital. He's all set up and started his work right away. They've got a good protocol, that includes physical therapy, occupational therapy, respiratory therapy and speech therapy. Mom said the place is real nice and very convenient for her. Dad's still a little quiet, but seems to be positive. First priority for them is to hammer out the neuro assessments. This will let the doctors make a plan for recovery and give us a target date for completion. For more info on neuro assessments and deficits, if you're curious, check out http://www.tbts.org/itemDetail.asp?categoryID=260&itemID=16241.

For those of you who have asked about sending flowers and cards, he can now receive them. Here's the info:
HealthSouth Scottsdale Rehabilitation Hospital
9630 E. Shea Blvd.
Scottsdale, AZ 85260
Lowell DeBok, Room #303