How About An Update?

Sorry gang, it's been awhile. It's been an insane last couple of weeks for us... and none of it had to do with Rach's health (yeah! and a nice feeling). She continues to do well, so much so, that as she walked across the living room this evening (no assistance) she looked as if she was walking normal. I should qualify this, to say her walking up until this evening, was somewhere between a granny shuffle and Frankenstein coming at you. It wasn't graceful but it sure was beautiful to watch. Now her walking is all about regaining her balance and strengthening her core. She is walking with a cane for any distances more than 25 ft. Occasionally, when she is tired, she'll require the use of her "stick" around the house too. Here's something to ponder and a warning, DO NOT give a cane prematurely to a brain injured person, you're likely to become a victim too.

More importantly for her, she is really starting to get some of her cognitive skills back. She desperately wants to go back to college so she started reading a book to exercise her brain and get some of damaged areas rewired. She is tough as nails and such a fighter.

I did say earlier that we were busy. Within the last couple of weeks here's some highlights:

• Jordan graduated from Selah High School.
• After graduation, Jordan and I went to Yellowstone for a week. We went fly fishing on the Madison river and spent hour upon hour in the park exploring every nook and cranny. It was a time we'll both cherish.
• Liisa and I celebrated our 25th wedding anniversary June 18th. I can't believe she put up with me this long. I'm a blessed man to have her.
• Paige returned from England (Rach's youngest daughter). She is a little chatter box. Even on her first day back, she seemed settled and "back at home". It was cool to come home from work to have the duo cheer leading squad yelling "grandpa! grandpa" again.

On a down note, when Rach's husband returned Paige he informed us that he will be seeking "primary custody of Paige" as part of the divorce agreement.

Here's a little someone we ran into while in Yellowstone. This grizzly is actually feeding on an elk carcass. He's about 60 yds away and we stayed very close to the ranger with the big gun. Take a look at his claws.

Those Scary Times

When it comes to long term illnesses, you learn something very quickly, to be patient. We have received difficult news several times during the course of Rach's illness. This week was no different. Her neurologist got her blood work back from the lab and last Tuesday he called us at home in the evening with the news. She had elevated liver enzymes (meaning that something could be destroying her liver) and the doctor didn't know why. None of the meds she was taking should be doing this. But with the battery of powerful meds, one thing they are always looking out for is destruction of vital organs. The chemo can affect the heart, and the steroids can destroy the kidneys, the diabetes that comes from steroid use can destroy a plethora of organs, so checking for problems is always ongoing.

When the doctor calls and says he is perplexed about the elevated count, it's unnerving. When the doctor calls you in the evening, around 7:00pm, it's even more alarming because you understand he has red flags popping up. Rach's scheduled blood test was supposed to be last Friday but he orders one for Thursday.

For all the people that have gone through long term illnesses, you'll understand this. Like this elevated liver enzymes, I've learned to cope with "potentially" bad news. When Rach first got ill, everything became big. If it was bad news, in my mind, it became even worse. I'm not sure if this is human nature or just the way my mind works. But as time has passed, I've learned, instead of talking about it, I keep quiet. I go to work, unsettled; having my life turned upside down (again), until the results come back. I continue on. Some days I can focus and then I'll lose minutes, lost in the weight of the situation. I figure there is no sense having everyone worried or panicked. I pray.

So Liisa, Rach and I wait for the results. We are all on the pool deck, pulling weeds and throwing gallons of chlorine into the pool, when we "get the call". It's her neurologist. Liisa comes back and says, her enzymes are all back to normal. With that, all of us give a sigh of relief and can relax again.

There have been many of these "scary times" that have cropped up. The other day, Rach was a little more unsteady than usual and made the comment, "I'm a little off today". She has never commented on a good day or bad day before, so what does that mean? If she notices it, how bad can that be? Is she starting to regress? The very next day, she is back to improving. Those "scary times" have nearly become a part of our daily lives, some of them bigger, some really small but they are there. It is exhausting and is a roller coaster of emotions.

So, if any of us seem unattached, short or out of sorts that day, it might just be one of those "scary times" rearing its head. There is a lot behind the scenes going on that just hasn't been talked about yet.

Cool Things

Rach asked this evening if I had posted anything new on the blog. "No, not lately, baby." To be honest, it's tough coming up with things to write about when things are changing at a snails pace. But I do enjoy blogging, although I'm still baffled, when people ask if "I'm going to post anything new?", like they are looking forward to it... you make me smile... really, you look forward to my ramblings?

Actually, there are hundreds of thoughts and experiences with Rach's Susac's I could write about but it wouldn't be anything that would help build anyone up. (like the internet needs another rant site anyway) There are little things we know about but we just wait out. If it's big, you'll hear about it, otherwise we endure. I've hoped to encourage. Your encouragements have kept us going too. There has been a lot of strength drawn from the people who care enough to spend a few moments reading about my daughter Rach and her battles. I take more than I give in the moments I pen my thoughts for the evening. Trust me, there have been some very "difficult" people or times during this adversity. It just doesn't make sense to share them.

But there are wonderful things I can share.

Liisa and I are going to be married 25 years this June 18th. If you know anything about Liisa, she is an amazing woman, great mother and wonderful wife. With all that said, she can't cook a lick, the kids know it and if you've had dinner with us, you know it too. It's something we laugh about with her. In our home, the smoke alarm just means "dinners ready!" Apparently some of Liisa's co-workers understand this too and have bought several weeks dinners for us (out of their own pockets) Do you know how cool that is? Just check out some of the meals we've been getting - FreshTastesMeals.com

It's not always about saying a lot to us but the heart behind it that makes the comments so meaningful. I have a great friend that wrote:

your situation grounds me if you will. I can't believe it...my life is awesome and I still feel put upon...that is not right and I thank you for sharing...i'm sure there are tons of people you are affecting this way.

No way! this guy is a rock, someone I have always looked up to and for him to say this blog, Rach's fight and the strength we've pulled from all of you has affected him is pretty amazing. I think it's cool.

Some of you have known me long enough to know my "preacher" years. I now jokingly say, "God had a great idea when he thought of the church... until he invited the people"... Like I said, I'll avoid the rants. ;) Life has a way of giving us back the things we have given. Rach's doctor, her general practioner, asked if we minded him praying for Rach, then added that he has a friend who loves to pray and asked permission to have him visit Rachael. "Not a problem", it's not like its going to hurt and we beleive prayer can and does change things. Next thing I know, the doc is talking about one of my Young Life kids from years past coming to pray. Good ol' Barney, now mind you, when the doc mentioned his name, prayer wasn't the first thought that came to mind. He did come to the hospital, many times, whether we were there or not, sometimes with his wife. What a young man who has grown in wisdom and faith. He is truely an example of all that you'de hope to find in a person of faith. He helped renew and rekindle some things I had let die in my life. You can't buy hope. Barney reminded us that hope is available to all of us, each day, regardless of how mired in "shit" we are. How cool is it to live in hope once again."

Laughter Is The Best Medicine

If there's one thing I can say about my family, they know how to laugh. In the face of adversity, we've always been able to "make fun" of any situation. Today was no exception.

Rach was boasting of some of the skills she had regained. What you can't hear in this writing is the tone, with her slowed slurred speech, but absolute fun she is making this statement with, "Dad, I can do my own laundry...(her giddiness was palatable but then came a long contemplative pause) BUT I can't fold it yet", as she breaks out in laughter. "It's just ends up in a big ball when I try", as she laughs more. She is such a joy and she is trying so hard. She seems to find the humor in the little things rather than finding the despair.

Lately, she has spent some time learning to do her own hair and apply her makeup. To be honest, the results have been scary at times. Rach is pretty fair skinned and because of the medicine she is not allowed to be in the sun, which kind of gives her this pale white skin color on top of her whiteness... well, on top of that, she's been dang sick and that'll knock the color out of you. In other words, this girl just doesn't have much skin color. I'll get to the what all this means in a bit.

We were talking to Jordan about graduation (yes, the forgotten child in this, and is quickly going to be a high school graduate) and in walked Rach with her walker. Clunk, bonk and a bang later, she enters our bedroom (trust me, she won't be sneaking around the house any time soon). On good days, she can support her weight and can take a few steps on her own with out her walker. This day was one of those "good days" and she took the steps toward our bed. You have to understand her steps, its more like a toddler learning how to walk. Her arms are forward and she has a very herky jerky gait.

Jordan took one look at her, as she is now lunging toward him and virtually landing on him. Jordan just cracks up. He's looking at this wild haired, dark eyed (remember that part about applying her own make-up), pale skinned zombie flopping on him and starts making these "zombie noises" himself. You know, those deep groan "uhhhhhh, uhhhhh, uhhhhh" sounds you hear in the movies? Rach busts out laughing, because now Jordan is standing with a blank stare, arms stretched doing his own best zombie imitation, making fun of his sister. We all laughed.

Today, I am thankful for laughter, and I am so glad my kids can find things to laugh at in all this too.

The Good and The Bad

The doctor explained to Liisa that Rachael has a hard time with "executive" decisions. If she's in her walker and notices something that has greater priority (in her mind) she'll just let go of the walker to go do that other thing. And you guessed it, KA-THUD! Brain injuries really stink. She still laughs about it.

Having her home has really boosted her spirits. She is getting so much stronger, her balance and walking have improved greatly. She continues to go to Physical Therapy (PT) and Occupational Therapy (OT) 3 times a week. The outpatient therapies are really focusing on the memory problems and using adaptation skills to teach her brain to overcome some of the skills she has lost. They are also going to have her evaluated by a Speech Therapist as well.

She is only taking chemo every three weeks. They decided to be a bit less aggressive in order to keep the damage from the drugs at a minimum. She is also on a tapering dose of steroids. She continues to be monitored for the diabetes which is a side affect of the steroids. She craves sweets but knows that she can't have any. It usually becomes one of our biggest battles over her.

On a fun note (oozing with sarcasm) the rear passenger window in my car got shot out by a drive by shooting today (there's a good reason I don't live in Yakima). They hit one other car. Three women were leaving Pizza Hut when the shots rang out, they ducked and just saw a glimpse of a "guy hanging out the window of a white car shooting." What scares me is there is no way these punks could have known there was someone in those cars. I am so thankful no one got hurt.

The way things have gone lately, I might suggest that if you're walking down the street with me, you might consider walking on the other side of the road. I would completely understand. :)

The Weekend Off

I needed a break and stepped away from the computer this weekend. I'll post an update of Rach's progress later today.

Have a wonderful day!

A Few Special Thanks

I'd like to take the time to thank some very special people during this time.

First, to my sister Patty (and hubby Mike), thanks for coming over and caring for Tala and taking care of the house when we couldn't. It meant so much.

To two very wonderful young ladies, Wendy and Megan, Rach's most "best-est" friends. Your support and help will never be able to be repaid.

Liisa and I have wonderful jobs. We couldn't have survived this without the generosity, patience and incredible employers and the people we work with. You make going to work every day easy.

Corday, my man, thanks for your integrity, faith and wisdom you gave us. Your visits to Rachael and prayers meant so much more than you'll ever realize.

Jason, dude, thanks for carrying the weight at work for me. I owe you.

Dr. Sloop, not just a neurologist but an amazing man. He visited Rach on his days off and spent time that other physicians might not have taken with Rach. There will be a special place in heaven for people with hearts of compassion like yours.

Dr. Bowen, thank you for taking the time to visit Rachael personally while in Yakima. The hand of God was directing you that day.

To all of you that prayed in earnest, you are witnesses to the power of your prayers. Rejoice!

To my MC brother, Ess, thanks for being an ear to bend. You are a good friend. The beer is on me when we finally get to a ball game together.

One last person, our lawyer, Bryan Gillihan who spent a lot of time and energy getting all of the necessary legal papers in order, without charge to Rachael. I never thought I'd admire a lawyer but here's one that has a passion for the law and is just a good honest man.

I knew I'd forget someone. Andy drove from Utah to be with Rach for a couple of days. An amazing young man and friend.