Git Along Little Doggie...

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

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




Sony, Jenny, Mom and Dad

Sony, Jenny, Mom, Dad, Louis and Maria

No surgery!

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

Doing good....

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

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

Two-steppin' to Texas...

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

Still waiting...

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

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

Argh.....

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

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

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

More info

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

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

All Clear

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

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

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

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

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

Chicken soup....sort of

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

Lucky Lowell

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

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

This glass is definitely half-full.

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

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

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

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

All's Well

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

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

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

Countdown to MRI. Praying for more good news.

Healing power

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

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

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

Therapy update

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

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

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

Seizure (over)medication

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

Was taking:

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

The current plan:

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

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

No one has ever asked me what it's like growing up with a brain injured parent. Maybe it's because no one in our life understood, or wanted to understand, the severity of what had happened to my dad's brain. We hear cancer, we work towards remission, then we do our best to forget about it and never talk about it again. Well a brain tumor is not your typical cancer. The tumor can't just be "dealt with" because the tumor invaded the very core of that person and stole a part of their being, their identity.

Would I have wanted dad's tumor located in a different area of the brain that could have left him speechless, paralyzed, deaf, unable to walk, or worse? We all say he is "lucky" that it destroyed his right frontal lobe. "Nothing important is there," they said. "It won't leave him with significant deficits." But let me tell you what's in that 'unimportant' area. The frontal lobes:

• are our emotional control centers and home to our personalities
• are involved in motor function, problem solving, spontaneity, memory, language, initiation, judgement and impulse control
• allow interpretation of feedback from the environment
• house attention and memory capabilities
• control social behavior

I don't want to be depressing. But there's a small part of me, an inner-child, who is still trying to fully grasp that there was a reason, a clinical reason, why my dad behaved the way that he did during my/our tender years. We've been aware of the brain tumor/brain damage fro 20 years now, but it most likely was growing, invading, damaging my dad's precious frontal lobe for decades before. His personality, his behavior was not monstrous. I've known those who have endured far worse. But if I could do something so childish as to wish for things to have been different, I wish for life without a brain tumor. I wish that he could have expressed on the outside who he is on the inside. I wish that the harsh words could have been soft, loving, sweet. I wish he could have hugged more and yelled less. I wish for him not to feel angry, but to feel peace, love. I wish for him to be healed as my heart has been healed. God has given me the ability to love him unconditionally and when I look at him I don't think of these memories any more. I plainly see my dad, his imperfect self, a loving, intelligent, talented man, a fatherless boy who is still somewhat trapped inside, yearning to be more than his brain injury.

Big meeting with Dr. Neuro-Oncologist yesterday. I'm tardy with my report because I'm sick. (Ava's escape this cold unscathed, but I'm a wreck...) Here's a quick recap:

• Dr. thought that dad's current condition is symptomatic of Parkinson's. (Not something we wanted to hear...) But mom told her she is confident that these symptoms -tremors, rigidity, little blinking and lack of emotion outwardly) are drug induced because he's so highly medicated. She agreed to taper off the seizure meds a bit and stop another memory drug they had him on. This is good news for dad. He's deserves a break from being so doped up.
• On November 29th he will have his first follow-up MRI to see what the situation is up there (hopefully nothing). They will meet with the Dr. immediately following and will assess the need for chemo at that point.
• It was confirmed that dad's tumor has a genetic marker that indicates 1-great odds for long-term survivability and 2-would be treatable by chemo if necessary (not all brain tumors are sensitive to chemo). These genetic markers were discovered in the last decade, one of the many scientific achievements that have taken place since dad's diagnosis in the 80's. For more info, check out http://jco.ascopubs.org/cgi/content/full/18/3/636?eaf.

Overall, the feeling after the appointment was positive. Jenny was able to attend as well. She finally headed back to LV tonight after 10 days with mom and dad - what a trooper.

(cough, cough.....I'm off to bed.)

We may stumble, but we press on

Some falls are painful. Some may leave a scar. Others are emotionally painful. Such is the fall my dad experienced today. Although it left him a little bruised and with 5 stitches over his eye, for a moment it felt like a punch in the gut, to all of us.

This morning dad was sweeping the walkway in front of the house when he decided to get out the hose and clean it a bit more diligently. Unfortunately, somehow he stumbled over the hose and fell forward, breaking his glasses. Poor dad. Mom and Jen were in the midst of preparing the house to be shown by a realtor, but had to spend the morning in urgent care instead. He is doing well, not in too much discomfort and is getting new glasses this week. Needless to say, it was a reminder that he still has a long way to go. (This was the second fall since he's been home from the hospital.)

We each have our faults, our weaknesses, our shortcomings. But we each also have the ability to affect how we behave and react. I may not be able to control the fact that my dad suffers from this horrible disease, but I can control today, what choices I can make today to help make his life better and my family's life better. If I say that the situation is dire, too stressful, depressing, then I will react accordingly and it will become a self-fulfilling prophecy. But if I choose to see the good, as convoluted as it may seem to be at times, then I can press on.

Dr. Jenny

I think my sister is on the cusp of an epiphany, and if not, she should be. She is doing a fantastic job stepping in to the role of healthcare and therapy advocate for dad. I am so proud of her. She might have found her calling. After I left, I kind of passed the baton on to her, and boy has she ran with it. We are trying to parlay his therapy into his everyday life as much as possible, and Jennifer is making sure that every moment is a teachable moment. She is organized, determined and compassionate.

Here's a picture of dad's white board, which he wrote down his daily activities. They're working on getting him assimilated with a planner, with the goal of getting him to use a PDA at some later juncture.

I received a nice email through the online support group from a man in Australia. He reminded me that the abundance (or over abundance) of seizure medications not only suppresses seizure activity in the brain, it suppresses a lot of normal activity too. So much of dad's current condition is a result of the high levels of seizure meds, and, as this man put it, having egg beaters whirled around in the grey matter. It takes 6 months to a year just to recover. All this I know, but need to be reminded of. Time and patience are of the essence.

Today I finally joined an online support group specifically for those affected by oligodendroglioma brain tumors. I'm looking forward to learning and sharing. I've read so much about other people's experience that I am constantly reminded to be grateful for dad's current recovery and the health of my own family. It's a blessing that should be acknowledged every day.

A big step

The docs (literally) pulled out the feeding tube today. Yahoo! He said he didn't feel a thing and it was over in a flash. (I was a little disturbed to hear that it was about 2 feet in length....not a nice visual...) He didn't need any stitches or anything special. It will just heal up on its own. This was a really big deal for dad and I'm elated at this milestone. He called me right after and we had a nice chat for some time. I've been perusing medical journal articles to see if there's anything of interest that I can add to my growing library of brain tumor knowledge, and he asked me to re-cap what I'd learned today. I recounted a case study of woman who was treated for status epilepticus at Barrow, similar to dad.

This picture is of dad completing a puzzle. We've practically strapped him to this chair in the kitchen where he has been instructed to play games and work on activities, all for the greater good of his therapy.

Today he had speech language, occupational and physical therapy. Since he's an outpatient now he has a whole new team of Drs./therapists and they will all be meeting soon to discuss is progress and give us an idea of how long this level of intensive therapy will continue. We are all very proud of his hard work and how far he's come.

I just wanted to say thanks Dad for a great trip to Phoenix. Ava and I really enjoyed spending time with you and mom. I'm continually inspired by you.

Quick update - Dad is slated to get his feeding tube removed some time this week. This is great news because 1- he doesn't need it anymore, 2- it causes him pain, and 3- mom has to inject it with water daily to keep it clean and it's kind of unnerving to watch, although he says he can't feel a thing. Another milestone on the road of recovery.

Back to the Blog

Ava and I returned home late last night. We had a great visit, but it was tiring for us both. Here's my recap...

Dad is doing well, although he's tired of people telling him that, or telling him how good he looks, because he's still in the process and has along way to go. I'll be honest and say he's far from the man that he was before this happened, but at the same time he is. He might be weak, at times fragile, need assistance with things we all take for granted, and slow to speak, but he is also struggling to let the "real Lowell" out. If you have enough patience, you can see that he is still the same, you just have to be willing and able to see through the haze.

I was able to attend a few appointments with him at the rehab hospital. I was trying to learn as much as I can to help translate his therapy to his everyday life at home. He may only attend therapy for a few hours a few days a week, but we can become our own "therapists" at home. One of the docs agreed that the therapy has to happen at home as much as possible. For example, the speech language pathologists had him do an activity with playing cards. So I got him a few decks of cards and he can now practice it at home. She said playing games was good so I got several games to play, all of which he did really good at, albeit sometimes it's like watching paint dry playing checkers with dad. (He takes a long time contemplating each move!) It was REALLY fun. Playing games was kind of our thing when I was a kid.

During a long drive to his favorite trade-in book store (where he bought a clasic hard-bound edition of Sea Wolf), we had a candid talk about what happened. It's difficult for him to grasp because A) he doesn't remember and B) his short-term memory isn't so great, so he has a hard time holding on to what has already been explained to him. In the words of Dr. Nuero-Psych, it's scary when others have memories of something that happened to you, but you don't. But since his brain was "interrupted," it did not have the ability to make memories. (We've gently told him that he should be grateful that he doesn't remember....) So we had a long talk and I went over the details of what happened. My plan is to write it in essay form for him to read and re-read whenever he feels he needs to.

Jenny is arriving Saturday for a 10-day stint. My next task is to document everything I learned and my ideas for his care/therapy and pass the baton to her.

Busy Baby

These glasses are from Ava's doctor kit, which she brought along in efforts to help care for grandpa. Funny thing is that dad keeps putting them on for a laugh, which is exactly the response he gets from Ava. It's pretty cute.

Mom and I have had an interesting time reviewing the stacks of bills and explanation of benefits that are pouring in now that dad's home. Many of the bills are from doctors that we've never even heard of or remember meeting. The bill from just the neuro hospital (not including the hospital he was first at or the rehab hospital he was at a month after) clocked in at $270,000+, and this does not include doctor professional fees or all of the pharmacy. Good news is that dad had just started Medicare in June and they purchased a supplementary insurance plan, without which would have left them in dire straits. In fact, the old insurance he was on would have left them in that same position. So it is kind of a blessing that this happened after June, and not before.

Live from Phoenix

Sorry for my tardiness. The computer at mom and dad's is located in the guest room, and Ava's a pretty light sleeper when we're on "vacation" so there could be no typing during my usual evening blog hours.

This photo was snapped yesterday on our way to an appointment at the rehab hospital. And let me tell you, Dad was MR. POPULAR. During my tour of the facility, several nurses shouted his name in joy and came over for a hug and to praise his remarkable recovery. He even has made friends with a patient, a very nice woman with whom we chatted with for awhile.

Mom and dad attended a touch-base meeting with a psychologists (who informed me I was not invited because of my toddler-in-tow). This doctor will meet with them on a regular basis to make sure that all of his needs are being met through his therapy and that they understand each step as he progresses. As I've mentioned before, some of the therapy can seem remedial and be frustrating, but it's important to be reminded that this therapy is helping to build "new pathways" in the brain, circumventing the broken and damaged areas, so he can be good as gold again.

Ava's doing a great job keeping everyone entertained. She's been making her way through the kitchen cabinets, seeing what she can find for amusement. Soon she was making her way to dad with this colander and it quickly became a fencing match. On guard!

I'm very happy to report that dad is much better than I anticipated. He practically doesn't need any assistance getting around (the walker is gathering dust), he eats very well, and he's easy to talk to. He's still slowed down from his usual self and sometimes the words are hard to find, but I'm confident all of this will continue to improve. Today we're going to get his medication levels checked. This is significant because he is on massive doses of seizure medications, much greater than he's been on before. These high levels may not be necessary and at these levels they most likely significantly contribute to his slow motion and prominent tremors, which make small tasks difficult. (He had hand tremors for some amount of time after his second surgery, but got better over time. This time they seem a little stronger.)

As I mentioned a few days ago, dad has a caregiver that's here to help when mom is at work. She was here yesterday for a few hours. I talked with her for some time and I found her to be a lovely woman. She made cookies - an easy route to dad's heart.

Nice shirt, pop. See you tomorrow. I'm looking forward to checking out your new spiffy haircut, as well as all your other fun stuff, like the tube through your abdomen. Should be educational and fun.

More from Phoenix tomorrow.

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

Dad's prognosis is EXCELLENT!!!

What a positive day!

First and foremost, mom finally had a talk with the neuro-oncologist. She said that dad's prognosis is excellent. And in fact, she says that there is no visible tumor left and chemo at this point is unnecessary. She won't even see him until he is discharged from rehab, then they will start to monitor him via MRI, and then chemo will come into play if they see anything crop up in the future. For now, the tumor is (was) exactly the same as it was 20 years ago, and it is non-aggressive, and slow-growing. The docs say that they are here to "wait on the sidelines" until they are needed. Dr. Oncologist also believes he will rehab quickly. And, importantly, his current "hazy" condition is still due to the length of the status epilepticus and he will recover from it. This is the best possible news we could hope for. (Interesting though that another doc had eluded that the tumor had "crossed surgical margins" and was aggressive.....now we know that is not the case.)

Tomorrow he is being transported to the new rehab hospital. Yipee! Out of BNI! Now that's progress!

This evening they put in the new feeding tube. Mom also mentioned that his swelling is much better and he looks more like his regular self. He talked to Carolyn on the phone today, which I'm sure lifted his spirits.

Oh, and as a side note, Dr. Oncologist also told mom that there is an excellent, top-notch doc here in Dallas that is her counterpart and can pick up on his care whenever they get moved out here. Another great discovery.

(I'm still doing a little jig around the living room, I'm so excited!)
-Darcy

Thursday

Today was a good day all around.

After much physical therapy, dad had a shower. Seems so menial, something we all take for granted, but it's a simple act that can help make someone feel so much better. He had a good shave and mom gave him a little "foo foo." Mom said he's talking more and reading a lot. I talked to him again and he seemed a little refreshed and positive. Better than yesterday.

Tomorrow morning he will have the procedure to place the feeding tube (percutaneous endoscopic gastrostomy - PEG) directly through his abdomen. His swallowing reflex is still not adequate.

The cardio doc paid him a visit and said things cardio-wise continue to look positive.

The rehab hospital closer to mom and dad's is sending someone out to evaluate dad to see if he's a candidate for their facility. Otherwise, he'll stay where he is and mom will have to keep puttin' miles on the ol' Saturn.

We've found a gem amidst the tight-lipped, poor-communicating docs that we've dealt with so far. These are the terms mom and Jen use to describe dad's latest speech therapist:

• "Very nice"
• "Very reassuring"
• "Everything you would want in a doctor"
• "I want to go into therapy with her myself"

Although dad still has to go through a battery of assessments, Dr. Wonderful Speech Therapist said she thinks he will rehabilitate quickly. (Is it appropriate to hug your doctor?) And this is the best part: She moved to Phoenix last year from.....(drumroll)....Heath, TX. That's right, my new hometown. Since mom and dad still want to try to move out here, she was able to give her good information about doctors, hospitals and facilities for dad. She even gave mom her personal email, and recommended a hair salon for me, which happens to be about 1 mile from my house. Ah, serendipity. Or perhaps divine intervention.

On a closing note, one visiting doctor, aiming to assess dad's memory, asked him, "Who is the President of the United States?"

To which dad replied.....

"Unfortunately, George W. Bush."

Get a good belly laugh, ya'll!

Wednesday

We've made contact! (Well Dad and I at least, the doctors still seem to be MIA.)

Today Jenny facilitated my first phone conversation with dad. It felt wonderful to hear his voice, however raspy and weak it may be. He asked, "How's my granddaughter doing?" and when I asked him if he missed me, he said, "You bet," quite emphatically I might note. He also mentioned that he was happy to get an email from Bob Baker. And he thanked me for keeping on top of his email. I'm naturally a "daddy approval-seeker," so it felt good to know that he appreciated this. It would be dishonest of me to say that he sounded great and just like his old self. So in a sense it was difficult to talk to him, but, as I discussed with mom, it's important to remember that he is still in recovery mode and he's going to get better, even if it's a long haul.

[Caveat: I'm sure it's apparent and understood, but any feelings we have that lean towards being scared or sad about dad's situation are left to the confines of this blog and we would prefer them NOT to be communicated to dad. Although someday he will read this and hopefully it will be insightful to him.]

Without a sit down with Dr. Oncologist or at least a pathologist, Jenny obtained a copy of the final pathology report from some neurologists today. The report indicates final grading of the growth as oligodendroglioma grade 2.5. This is good news because it means that it is exactly the same as it was 20 years ago - a slow-growing, somewhat manageable tumor. We learned that dad will take an oral form of chemotherapy when the doctors decide he's ready for it. Gone are the days of in-hospital, drip-drip from a bag, loose your hair and your stomach chemo. Gone are the days when chemo wasn't even an option for primary brain tumors because the drugs couldn't permeate the blood-brain barrier. 20 years later, we have better options for management of this disease that hopefully will only have minimal uncomfortable side affects for dad. We hope he will be as successful on this chemo as Grandma has been on hers. :) I guess I should mention that he requires chemo because one doctor somewhere along the way in the last week told us that there's indication that the surgeon was not able to successfully remove the entire growth and that it may be lingering in small hiding spots. Enter chemo. Target and destroy meandering tumor cells. Job done.

Another hiccup along the way - poor ol' dad now has a case of shingles. Ouch! But they're going to start him on some antivirals soon. Hopefully it will run it's course quickly and not cause too much pain. (Damn that dormant chicken pox virus...)

Tomorrow they're going to remove his feeding tube because it's been there too long and could start causing problems. Instead they'll perform a procedure to insert it directly through his abdomen. Still hoping that he won't have to be on it for too much longer. Apparently he really wants a light beer and almond M&Ms. Breakfast of champions. Right now he's allowed limited satisfaction - Ice Chip! Jen! Now! (Ice chip only once per half hour, delivered on schedule by Jenny!)

The other big development is that they feel that within a few days they will be willing to release him to acute long-term rehab, whether that be at the current facility or a rehab hospital, of which there is one close to mom and dad's house. They mentioned that they want the family to be involved in his therapy. Like there's so many of us - and we live there - and mom doesn't have to work. Not really realistic. Not sure how we're going to handle that.

Onward and upward dad. We're all confident in your strength and determination.
Darcy

Tuesday

Crotchety, whiny moment (I promise it won't last long...) -
Thought we would get to do a sit down with Dr. Oncologist today, but she informed us that we would need to make an appointment to get our questions answered. Unbelievable. She was on vacation, now she needs us to make an appointment before she can boil down what is really going on here. She did feel inclined to tell dad that he would need chemotherapy. Wish we could have had that conversation with her first.

He has been moved to a telemetry room. He's continuing to receive regular physical therapy. We did find out that he will continue the therapy in-hospital, so his stay will be weeks/months depending on his progress. I'm sure dad's not excited about this, but I think it's positive because last time they sent him home very early and he had some out-patient therapy that never seemed to be too effective.

I wanted to thank those of you who have emailed me notes for dad. I can't tell you how much this means to him. Jenny tells me that when she reads these to him he seems to perk up. Keep them coming. Nothing is more healing than knowing you are loved and cared for.

Additional note:
I just spoke with mom and Jen after their day at the hospital. They attended a brain tumor support group this evening which they said was helpful. They also mentioned that the reason they haven't given us a full-blown prognosis is that the docs have a "don't ask, don't tell" policy. Since every case is different, they typically don't like to go down this path. I think this is wise because we should totally focus on getting him better and into remission and not about what the statistics say. Also, Dr. Oncologist said that right now we are to focus on his recovery, then we'll cross the bridge to treatment when he's more equipped for it.

- Darcy

Monday

Doctors should not be able to take vacations... at least not when you need the results of a pending pathology report....

Apparently the pathology report is finalized, but the doctors able to discuss the results are still "out on vacation," or at least not able to answer a page. Hopefully more tomorrow.

We learned that the heart issue last week (which has been termed a type of "failure") was due to a complication that can be associated with the surgery. The medication he's on now is only necessary for him to take in the short term.

He should be moved from the ICU to a telemetry room sometime soon. This is not exactly a regular room, rather he will still be able to be monitored closely.

Today the physical and occupational therapists continued to work with him. They will continue to treat him in-hospital, so his stay at St. Joseph's/Barrow could go on for some time. They had him up and in a chair for about 2 hours, where he enjoyed reading his National Geographic.

The feeding tube in still in. The doctor said that it's taking some time for him to be able to swallow properly because his throat is all swollen from the length of time he was intibated with the ventilator. Once this gets better, he should be able to loose the tube.

The tremors in his hands seem to be improving. This, along with some other issues, will continue to improve as he recovers from the surgery and the brain swelling decreases.

The bacterial infections he's been suffering through seems to be clearing up. Huge relief.

And lastly, he's tired of mom and Jen starring at him all day. :)
- Darcy

PS- For fun, click on the link to the left for Postcards From Dallas.

Sunday

Still on feeding tube. But no fever, so that's something.

Dad still hasn't passed the "swallow test" so they're making him keep the tube. He's pretty discouraged by this, and by the situation in general. Still in ICU.

Hopefully mom and Jen will be able to meet with the neuro-oncologist tomorrow and get some further information about his situation and have some questions answered. At this point, the pathology report is still officially "preliminary." There's been some confusion with everyone they've talked to about what's really going on here. Hopefully we should have some issues sorted out by this time tomorrow or at the very latest Tuesday.

To be honest, I think the gravity of the situation is beginning to settle in with everyone and the stress is now undeniable. Please pray for peace for my family. Dad seems very withdrawn, so now would be a wonderful time to pass along any personal notes from his loved ones that may happen to land in my email inbox (darcyrd@hotmail.com). They will be promptly forwarded to mom for printing and reading to dad- STAT! :)

Saturday

Kind of a tough day today.

So apparently dad pulled out his feeding tube at some point last night. I'm not sure if he's totally aware that he did it. (So it WAS him that dislodged it yesterday! Sneaky little dad.) So after much waiting, doctor checks, x-rays, etc., the tube was reinserted. He has not yet passed the "swallow test" so they're not yet allowing him to eat on his own. Too much of a risk for aspiration, and with his fever and possible pneumonia it's not a chance worth taking. Long story short, he had to wait all day for them to deliver any nourishment and liquids through the tube. Needless to say, dad is cranky - to say the least. He's still in the ICU. The pulmonary docs are still concerned about his lung situation so they're not ready to release him to a regular room. Plus he's REAL puffy and swollen all over so they've got to get that under control. Most of you know that my dad's always been kind of a bean pole, so to see him a little plump around the edges is a little strange. Payback for all the fat comments I would presume, dad. But his excuse for his missing "edit button" has always been "that they took that part out!"

I think at this point he is very frustrated and it was a very tough day on him, mom and Jen. The downside of him being neurologically a bit better is that he is totally aware of everything that is going on and it is very stressful and uncomfortable. But when mom and Jen left him this evening, he was enjoying his dose of morphine and an old John Wayne Flick. Very fitting. Dad can watch AMC for hours, even all night!

Mom said again that the long term memory seems to be good, but he seems to not be totally registering the short term. I think they're having to re-explain things a lot, which is adding to his frustration level. Mom said his tremors were improving a bit. It's my opinion that these issues will decrease the farther into recovery he gets. If I remember right, these were more like side affects from the last surgery so they're bound to be an issue (maybe even a greater issue) after this most recent surgery. The nurse did mention that each additional time someone has this surgery the harder it is to recover from it. But dad is a trooper and with a lot of prayer, love, support and encouragement from all of us, he can get back to were he was, if not real close.

This morning mom sent me a pic on my cell phone of dad. With the glowing oxygen sensor on his finger, he was pointing to the camera, as if to say "Phone Home." It was very nice to see him again, even if only on the tiny screen of my cell phone.

Our love and thanks to everyone for all your continued prayers and support.

Friday

Here's the latest-

• Dad still has a fever, and they're still trying to figure out the cause. One possibility is pneumonia, so they've cultured him.
• Still on the feeding tube, but they will allow him to try some food on his own and if he can swallow ok then they'll remove the tube. Somehow today the tube was partially dislodged so it was "re-installed" and mom said he handled it like a champ. Apparently he's really jonesin' for a Pepsi...
• The speech therapist and physical therapist met with him today. Should hear soon what their plans are on helping him and what his needs are for therapy.
• Dr. "Short On Words" Brain Surgeon checked on him today and said he was healing well.
• Mom says he's trying to talk, but his chords are still shot from the vent tube, so he's a little frustrated that he can't communicate very well. This should get better as the days allow his throat to heal up.
• Mom said his memory seems to be intact and he understands what has happened and the length of time this has been going on. But dad's long-term memory has never been a problem. He mostly has trouble with the short term.
• His blood pressure continues to be an issue, but hopefully the more days of rest and recovery he gets under his belt, the more likely it will be to resolve on its own.

Mom promises that she's going to sneak a picture of him on her cell phone and send it to me tomorrow. Can't tell you how much I miss him.

- Darcy

Random dad memory:

There were a few times in the winter that we got a good enough freeze that Fanno Creek behind our house in Greenway Park would freeze solid enough to walk on. So two or three times dad bundled me up in his old coat from when he was a kid and we went for an outing (once even in the freezing rain!) to trek through the ice and snow for a winter walk. There's even a picture somewhere that he took of me where I'm standing on the frozen Fanno Creek so bundled up you can't even tell it's me.

Thursday

Hi everyone-

Good news! Dad is off the ventilator! This is a huge step in the right direction. Mom said he seems to be doing well, despite a very sore throat. It might be a few days before he can fully and comfortably speak again, but at least now he's able to communicate better. Again, neuro-wise he seems to be doing well. He's wearing his glasses and watching TV - business as usual. His nurse said that he'll probably be able to leave the ICU in a few days.

Dr. Cardiologist said his heart issues are minimal and can be controlled with meds. Mostly high blood pressure issues, which seems to ebb and flow based on his stress level. Mom and Jen are helping to keep him calm and assured that he is on the mend.

If anyone is curious, here is a link to more info about oligodendroglioma.
http://en.wikipedia.org/wiki/Oligodendroglioma

I'm very anxious to be able to talk dad on the phone and hopefully will be able to do so once he gets his voice back and is transferred to a regular room that does not have phone restrictions.

Monday mom should be able to speak with the neuro-oncologist at length and get some questions answered about the recurrence and what that means in terms of further treatment. The first occurrence (in 1988) required surgery and a few rounds of radiation. At least we've already got the surgery out of the way.

On a sentimental note, when we were little, dad would play Blackbird and rock us in his dad's old rocking chair. It's a beautiful memory.

Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life
You were only waiting for this moment to arise

Blackbird singing in the dead of night
Take these sunken eyes and learn to see
All your life
You were only waiting for this moment to be free

Blackbird fly,
Blackbird fly
Into the light of the dark black night.

Blackbird fly,
Blackbird fly
Into the light of the dark black night.

Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life
You were only waiting for this moment to arise
You were only waiting for this moment to arise
You were only waiting for this moment to arise

Wednesday update

Hi everyone-
Two steps forward, one step back.

Neuro wise, dad is still making great strides. The doctors are pleased at his alertness and response. Still moving in a good direction.

We did find out today that the preliminary pathology reports show that what they removed during the surgery was in fact a re-occurrence of the brain tumor - oligodendroglioma. We're still waiting on the final word, but if this is the case, it's almost good news, because it's a very slow-growing, non-aggressive tumor. And hopefully all of it was removed in the surgery anyhow.

Today he had a small set-back. He had some blood pressure and heart rate issues, and they gave him a blood transfusion. Still not sure what is going on with that and I am still waiting on word from mom once she talked to the cardiologist tonight.

Ava and I are back in Dallas for the time being.

Please keep my dad in your thoughts and prayers.
-Darcy

Previous updates

Sent: Tuesday, August 21, 2007 10:36
Tuesday update -

We are seeing improvements each day, even if little by little. Today dad seemed to be aware of us, looking at us, nodding head a little, moving toes and fingers when asked, turning head to us. He even was lifting his head up. All things that make us very happy. He's still on the ventilator, but they've decided to hold off on the tracheotomy ventilator to see if they can wean him off soon, otherwise, they'll need to do the tracheotomy ventilator to make him more comfortable. The doctors and nurses all say that they are pleased with his improvement. Still no word on pathology. They've advised us that it could be several weeks before he's ready to leave ICU. Right now he's battling a fever and some minor infections, but all to be expected considering his condition.

I'm heading back to Dallas in the morning with Ava, but Jenny is able to stay for much longer to help out. Thank you for your continued support and encouragement. I know it means a lot to my dad.-Darcy

Date: Sun, 19 Aug 2007 17:11:55 -0600
Sunday update... No seizures recorded since time of surgery. This is very significant because it indicates that the surgery did what it was supposed to do - stop the seizures and allow dad to recover from them. Because the length of time he was status eppilepticus, it will take him some time to come out of it. For those who are interested, the time period following a seizure is called a post-dictal period (the time that someone is unconscious or the brain is "slowed down" recovering from the seizure), and since the status eppilepticus was for about a week, his post-dictal period will presumably be long as well. One doctor even indicated that it could take as long as a week.

Here's more good news - he's reacting more to pain and stimulus. Today he opened his eyes a little and squeezed our hands. Can't tell you how good this makes us feel. All of his other vitals are good. We've seen him move his head and both arms and legs. All good signs. Everything seems to be in working order.

I personally reviewed his MRIs from pre- and post-op. I needed to see for myself how much brain tissue was removed, since the surgeon indicated it was the entire right frontal lobe. From what I saw and learned from the neurologist, a small area of brain tissue was removed in addition to the scar tissue or tumor that had grown into the old tumor bed. I think it puts us at ease to know that in actuality he did not loose much more tissue than what had been removed in previous surgeries.

We just learned that tomorrow they are going to replace the type of ventilator and feeding tube he is on, so he will have to undergo two procedures.

If anyone would like to send dad a message, please feel free to email it to me and we will read it to him. We've got music playing in his room and we are trying to talk to him and read to him to encourage him to wake up. Thank you for all your love and support. Please keep dad in your prayers. All our love- Darcy, Rhonda and Jenny

Date: Fri, 17 Aug 2007 18:23:51 -0600
Here is the latest news-Dad was in surgery for about 4 hours this morning. They removed most of his entire right frontal lobe to try to stop the seizures. They've told us that this removal should not leave him with significant impairment (he'd already lost a lot of it in previous surgeries.). He's resting now, but has not yet woken up.

His coma-like condition is called status epilepticus. We're waiting to see if this surgery has stopped the ongoing seizure activity and we're praying for him to wake from it. It will take about a week to find out from pathology what it was the was growing in the tumor bed area (the old tumor cavity, where the scar tissue was found and removed last time) that was also removed.

We're going back in a little while to be with him after we get some rest. THANK YOU for all your emails, calls and support. Love- Rhonda, Darcy and Jenny

Date: Thu, 16 Aug 2007 17:33:42 -0600
Hi everyone-I flew into Phoenix last night to see my dad. Mom and I just had a discussion with his doctor. They feel that unless his condition improves today or overnight (with the addition of new seizure medications) that surgery needs to proceed at 9am tomorrow morning. The pressing issue is that he continues to have seizures and they need to get them under control to prevent damage to his brain. They know now that they are originating from where his tumor was and the area shows new growth/changes that's either scar tissue or new tumor. They feel that the surgery is our chance to get him out of the "coma," although that's not technically what they're calling it. They've told us that although surgery is always a risk, they feel that it's the right coarse of action try to get him back to us. Jenny's flying in tonight. Mom, Jenny and I thank you all for your thoughts and prayers for Dad. Please pray for the doctors that they can have the wisdom and skill to treat my Dad and bring him back to us.


Date: Tue, 14 Aug 2007 20:07:24 -0600
I can't remember who I've talked to or emailed, so here is a blast email to update those of you who might want to know about my dad's condition. We got some promising news tonight. Mom met with the doctors and they believe his "coma-like" state is due to underlying continued seizure activity and they are optimistic that we he will wake up. He does not have an infection of spinal fluid. He has some new growth in tumor area, but type is undetermined. They're not saying it's a recurrence, as it could be more scar tissue growth, like what they found in the last surgery. Please keep my dad in your prayers. We are praying for him to wake up and his body to be healed from these seizures. We're hoping that the doctors can find the right combination of drugs to stop the seizures and that they will continue to give us a positive prognosis. All my love- Darcy