Rach's Hope

How About An Update?

2008-06-23T18:56:00.000-07:00

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

2008-05-31T09:17:00.000-07:00

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

2008-05-29T21:02:00.000-07:00

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

2008-05-22T16:49:00.000-07:00

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

2008-05-21T21:49:00.000-07:00

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

2008-05-19T06:36:00.000-07:00

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

2008-05-16T19:20:00.000-07:00

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.

Her World Set Right

2008-05-15T19:24:00.000-07:00

I will probably never understand how difficult this has been for Tala. We know she had a lot of anxieties. She simply didn't understand why her mommy couldn't come home from the hospital. She, in her own 5 year old way, understood when things were serious for Rach. When things got to much, she would cling to us and she wouldn't let us leave the room. She knew when mommy was to sick that she couldn't cuddle with her in the hospital bed. She would turn to grandma and grandpa for lot's of love. Our heart hurt for her. She was afraid but didn't have the words to express what was happening to her tiny little heart. We tried to fill the hole that mommy was leaving but it was never like the comfort that only a mom can give. For so long, Rach was lost in a fogged mind, at times battling for her own life but had little strength or awareness to give much to anyone, even Tala. It wasn't Rach's fault, it was the vile disease robbing Rach and was stealing from her little baby too.

This morning, I awoke to Rach wanting to come up the stairs. At 4:50am, I wasn't about to argue, I just helped her up and sat her in "my chair" in our bedroom. Rach just settled in and watched a bit of TV. I think she dozed off shortly before I drifted back to sleep. A short time later, I awoke to another visitor to our room, Tala. Her usual morning visit ended up being different this time, it wasn't Tala asking to cuddle with grandma. She didn't ask for breakfast or want grandpa to turn cartoons on for her. She quietly, but very naturally nestled into her mothers arms. No words were spoken, for Rach and Tala, the bond had been reconnected. The love was tangible, peaceful and not contrived. I sat back and watched them snuggle together. Their love enveloped them both and allowed them both to quickly drift off to sleep.

More importantly, once again, the world was right for Tala.

Not Much Else to Say

2008-05-13T19:38:00.000-07:00

Sometimes you need volumes to explain the circumstances but other times a little action, facial expression or remark says it all.

Rach had walked into her own bedroom for the first time in 7 weeks. She grabbed for the new side railing we had just installed for her. At first, she sat on her bed, not saying anything, then she laid down. As she rested into her bed, it was as if the bed and blankets pulled her in with a big hug. She had the most relaxed look on her face, then let out a huge sigh of relief. At that moment, you couldn't see any tension on her face, just a big beautiful smile.

Welcome home baby girl.

Coming home

2008-05-12T19:25:00.000-07:00

This is long waited news, Rach is coming home. Yeah! this will do so much for Rach's mental well being. Now that I have time to ponder it, it will do well for her digestive system (and ours) for not having to endure another day of hospital food. :)

I do want to make this clear, Rach is still battling a very distructive disease and just because she is coming home right now has more to do with protecting her from the hospital itself. When you hang out in the hospital for seven weeks, you hear horror stories of all the nasty bacterias and fungus that you can get there. The reality, Rach is being sent home because those nasty bugs are very real and very distructive to healthy people, let alone people who's immune system is being suppressed. We'll stick with the home grown bugs.

We finally were able to get an update from her neurologist. He said that Susac's isn't like having MS at all, in some ways. While the symptoms can seem similar, they are completely different in what is happening in her brain. As her neurologist explained, "it's as if Rachael is having "micro-strokes" in the smallest blood vessels in her brain." The similarity is they are both considered auto-immune diseases in origin.

I was talking to a friend today and he reminded me, "What did we pray for in the beginning?" then said, "We prayed the lesions would subside and they have." Then he said, "Then we prayed that the progression would stop." Guess what gang? he's right, the progression, as we understood progressive diseases has stopped. We've ended up with something that has an entirely different outcome (the rehab doctor reminded today that her original prognosis was "terminal", for some reason he wants to keep reminding us of that). The fact is, we got an entirely different diagnosis, something that does stop. Isn't it a good thing that God doesn't always listen to the doctors? If we had listened to the rehab doctors, we would have been planning for a funeral.

Do You Think?

2008-05-10T14:27:00.000-07:00

Do you think Rach is ready to leave the hospital after nearly 7 weeks? We mentioned the possibility that she might be going home sometime early next week. When Liisa and Tala arrived at the hospital today, Rach had everything packed. She had all the pictures off the wall and her personals were in her purse. Mind you, this is no easy feat for Rach because of some of her mobility problems but I think she is clearly ready to get the heck out of that place. I don't blame her, we're all ready to get out of the hospital too.

Rach will be doing outpatient physical therapy and immuno-therapy.

Rach was able to leave the hospital for a few hours today and all she wanted was to "go home" and "eat at New York Teriyaki", her favorite restaurant.

The Eyes Have It

2008-05-08T17:39:00.000-07:00

The all important eye examine happened today. Liisa called about 9:00am (Rach's appointment was at 8:00am) and the results were not what I was expecting. "The doctor completed the examination and didn't see any problems in the retina." Ugh!

It is such a contradiction, as a parent, to be disappointed that there were no problems, especially when the matter concerns the eyes. All the doctor said was she might need a stronger prescription. With Rach amped up from steroids, it's hard to get her to settle down enough for a good and complete exam for new glasses. Liisa figured they would return later.

Mentally I went back to square one, malignant MS. My faith has been strong that Rach is going to get better. I really don't understand it, I just know it, I believe it, that she will get better. Hope is a great thing.

Liisa called about an hour later. I figured she was back at the hospital with Rachael and was settling in for the day of therapies. While Liisa was with the eye doctor, she wondered why they hadn't taken "pictures of her retina". She had to explain what they were looking for and the doctor had never heard of Susac's syndrome. He called the neurologist and found that they wanted an exam that would consist of a series of pictures while dye was being injected to see if any blood vessels around the retina had been occluded.

Once the new exam started the dye flowed freely... then suddenly stopped in one branch of vessels. Liisa said it was clear, it was flowing along, then just stopped.

It's definitive, with the involvement of the retinal blood vessels, it is Susac's syndrome. I'm not sure of the official count of Susac's patients but I think that Rach is case number 202 in the world since this disease was diagnosed in 1975.

What does having Susac's mean? What happens now? Where do we go from here? First, Rach will be getting very aggressive treatments. She will be coming home Monday, possibly Tuesday. They are doing this to protect Rach from exposure to the "nasty infections" in the hospital while her immune system is suppressed. Beyond that, I have not a clue. I'll keep you abreast while on this crazy roller coaster ride.

Nitty Gritty Details and Other Events

2008-05-07T21:00:00.000-07:00

To answer a few questions that were asked today:

Yes, Rach is seeing an Ophthalmologist Thursday (5/7/08). Since one of the issues with Susac's syndrome is retinal problems, an eye examine will essentially confirm that Rach has Susac's.
Rach will be on the Solumedrol through tonight then start a tapering course of Prednisone.
The course for chemo, being used as an immuno-suppressant, has not been decided. She will receive it on either a 7 day or 10 course.

Earlier, the rehab doctor wanted to show Liisa and me Rachael's MRI's and asked if it was OK for one of the nurses to watch Tala. We agreed since Tala knows all the nurses pretty well from hanging out up there for 3 weeks.

When we got back upstairs, from viewing the MRI's, all the nurses were gathered with horrified looks on their faces. As we turned the corner, from down the hall I heard, "Found her" and suddenly all the nurses and aids looked relieved. Being on a rehab unit with a lot of brain injuries, you soon discover that these people have a tendency to wander so we weren't alarmed. The extraordinary concern made sense when we saw that a security guard had Tala in tow. What? they hadn't lost a patient, they lost Tala from the time we left.

The nurse sealed her fate in losing Tala. She said, "do you want to go play?" In Tala's mind, play is play, and she has endured enough long hours there. So ANYONE suggesting something fun is going to get a full dose of fun. She immediately said to the nurse,"Sure, let's play hide and go seek".... and bolted for her favorite hiding spot. The nurse said she tried to "keep up with her" but when she rounded the corner Tala was "no where to be found."

They had every floor looking for Tala. Considering we were gone about 15 minutes, they were getting pretty concerned. One thing you have to understand about Tala is she is extremely diligent at hiding and she will not give away her hiding spot. She would never leave the floor, go into another patients room and just play in the lounge area, if not in moms room. I knew exactly where she had hidden because I had found her there earlier. To be honest, its probably one of the best hiding spots I've ever seen.

She was so proud as she was being escorted back... "Grandpa, we played hide and go seek and NO ONE could find me!" She didn't have a clue that she nearly had a hospital in lock down, it was a shining moment of hide and go seek victory for her.

Busy Day

2008-05-06T22:19:00.000-07:00

Today was a busy day. Rach had her rehab at the pool which I finally was able to get some time to go down there with her. She was pretty tuckered out but she battles through her rehab exercises. She is one tough cookie.

She started her Solu-Medrol, a 1000 mg dose of steroids, to reduce any swelling. The doctor said it's enough steroids to "jump start an elephant". She also started her chemo-therapy today too with a dose of Cytoxan. Since they believe Susac's is an auto-immune disease they are suppressing her immune system. In a sense they are shutting her immune system down and "rebooting" it.

Please be aware that if you have any colds, flu or think you're sick, try to avoid Rach, she'll be very susceptible to infections.

Rach Goes All Out!

2008-05-05T19:30:00.000-07:00

Liisa just called after meeting with Dr. Sloop. I mentioned in one of my previous posts that Dr. Sloop had a consult with a leading expert in MS, Dr. Bowen. Apparently when he reviewed Rach's MRI's, he went to the hospital and met with Rachael. These kind of guys just don't show up in hospitals visiting patients.

We've always joked that Rach has always done things with flare and to the extreme, this once again proves our point. She not only caught the attention of Dr. Bowen but from what Liisa said of her case it was immediately sent to a Dr. Susac in Florida. Why send it to another Dr. if you're the expert? Because he doesn't think Rach has MS... I'll let that one sink in, YES, I just said Dr. Bowen doesn't think Rach has MS. Ahh, but for the flare that Rach brings, she might have a disease that was only recently diagnosed and there are only 201 patients in the world with it, well, now 202 (maybe?) Dr. Bowen is thinking she has Susac's Syndrome, named after the Dr. who first described it in medical journals. The same Dr. that Dr. Bowen is now consulting with.

I don't believe things happen by accident. In a normal event of MS, the treatment would have NEVER been as aggressive as what Rach's neurologist took. As he said tonight to Liisa, "call it providence, but the perfect treatment for Susac's is what I was did." Now they need to continue more of her treatments along the steroid lines and forget the interferons, as they do nothing.

Rach overnight has become famous in the neurological world too. A project that Dr. Bowen is working on is a site for interesting/difficult cases that neurologist/researchers have access to, to discuss their cases, weigh in and make comments on. Dr. Bowen wants Rach to be his first case study. More than likely Rach's case will soon be written up in medical journals and studied for years by many neurologist and researchers worldwide.

So what does it mean to have Susac's? You are essentially in the same boat as we are, as far as what we know and understand about Susac's. We'll find out on the internet. Dr. Sloop did tell us that Susac's patients "get better" which is a far cry from what we were looking at with MS. It does sound as if there is an extensive recovery for Susac's.

We are still trying to process this but as always, there is hope and your prayers combined with ours will confound the doctors.

Good News!

2008-05-05T15:43:00.000-07:00

Whew!... thanks to all that have been with us in this, the prayers and words of encouragement.

Rach had her MRI this morning and the rehab doctor gave us her MRI results around 3:00pm. She said that "some lesions have shrunk and only one has gotten a bit bigger but the MS is not progressing."

It appears that the Interferon was just knocking her for a loop. We'll know what happens next when we meet with her neurologist. We haven't seen him since he had the consult with Dr. Bowen last week, so we're looking forward to talking with him.

The CAT Scan

2008-05-04T21:32:00.000-07:00

Sorry, I left things in the air, it was kind of tense until we got to the hospital. The CAT scan was to make sure the Interferon wasn't causing hemorrhaging, apparently one of the bad side effects. Thankfully, no bleeding from the Interferon.

The rehab doctor was finally able to get a hold of Rach's neurologist. He is planning on visiting Rach in the morning and she will also be getting an MRI. I'll update the site as soon as I know something.

When we got to the hospital Rach was sleeping and out of it. Rach's father-in-law, Jim, showed up and prayed with us. Shortly after Jim left, Rach woke up, and was alert and hungry. She started talking to us and the beautiful "Rachael smile" showed back up too. The nurses and staff at rehab have come to expect her smile (she simply never stops being cheery). Her smile has become the gauge for the staff when something is wrong with her.

I saw the change that prayer at that time made... in other words, keep praying.

Concern Grows

2008-05-04T11:10:00.001-07:00

The rehab unit called this morning and the unit doctor ordered a CAT scan for Rach. I'm not sure what they can tell from a CAT scan. The only way to see new lesions is by an MRI. We're headed to the hospital now, hopefully they can answer some questions.

If the scan shows anything, it'll mean that the MS is progressing. From the nurses we talked to this morning, she didn't want to eat and prefers not talking either. All signs that things are moving away from being mildly concerned.

Tonight she should be getting her Interferon but they are not going to give that to her just in case it's the medicine messing her up

The Little Girls

2008-05-03T19:21:00.001-07:00

For those who have never met Rach's daughters or haven't seen pictures in a while I thought I show them to you.

Paige is almost 2 years old. She's the rowdy one and is always on the move. She loves to play with her dolls but also loves playing with cars. Hmmm, wonder who she gets that from?

Tala is 5 years old. She loves to be outside "yarding" with grandpa. She would much rather be wearing a tiara and having a tea party for everyone. She is our princess.

Some Rough Days

2008-05-03T15:51:00.000-07:00

Not all days can be great and we're not expecting everyday to be on the up side of things but we do have to have pause when her down days string together. I received a call from the rehab doctor this morning. She wanted to let us know that she is concerned about Rach's condition. Yesterday, Rach was throwing up most of the day and had little desire to eat, let alone do her therapies. Today, she has a bad headache and her speech is a little off. It still could be the side effects of the Interferon but they usually go away, not last over a couple of days

The doctor wants Rach to have another MRI Monday, to be on the safe side. Her concern, now that Rach is on low doses of steroids is that the MS might be acting up. The MRI is ONLY precaution at this point and the symptoms should be seen as Rach is just having a rough patch.

I'll update this as soon as we know something after the test Monday or if Rach's condition worsens.

A Blond Moment

2008-05-02T17:57:00.000-07:00

This happened a few days ago but certainly gave us a chuckle. We were in the room with Rach discussing her new treatment plan and goals for the week.

One of the goals is word recognition. At times, Rach can look at an object and know exactly what it is used for and even tell the therapist what the function of the object is. The problem is she can not tell you the name of it. For example, she could not name a "toothbrush", although she could tell her that it was for "brushing teeth."

Liisa was discussing this with Rach and then showed her some objects. "What's this?" "My contact case", Rach said. Then Liisa asked, "and this?" "It's my cell phone", said Rach. Liisa looked at her, then asked, "Well what are the things you are having problems with naming?" Oh boy, even Rach laughed because she knew that if she knew the names of the things she couldn't remember, they wouldn't be a problem.

Sometimes Liisa lets her blondness shine through.

To Repair and Protect

2008-05-02T16:48:00.000-07:00

Yesterday, Thursday, was an interesting day. While we were not able to spend much time with Rachael; we did go to a symposium on the latest advances in medicine and research regarding MS. Currently, MS is one of the most research diseases in the world (keep in mind, the research isn't being done out of virtue, rather, its that the profits are huge. If the profits dry up, so goes the research)

The exciting news was a researcher stated that "within the decade, we will have a way to repair myelin." It seems that all the research teams have an extremely positive outlook on repairing the damage done by MS.

The speaker, Dr Bowen, put the goals in more realistic terms. He stated that;

"while we might find a way to reproduce the myelin, we want it to stop growing too much and need it to function as it should. We just don't want to end up with a skull full of myelin that keeps growing."

Another major goal for MS research is to stop the advances of MS. The amount of research being done is equally extraordinary, including cell transplants and regrowth of the damaged central nervous system through stem cell research. Currently there are over 75 drugs and treatments in study (not approved by the FDA) for slowing MS or helping MS patients in some form. No other disease has that amount of clinical drug trials happening.

The guest speaker, Dr. James Bowen MD; Evergreen Medical Center, is a leading clinical trial physician specializing in MS in the USA. The good news, he agreed to examine Rachael's MRI's while in Yakima. He is doing this as a consult with Dr. Sloop, Rach's neurologist. He is to recommend the best course of treatment for Rachael, including the continuation or cessation of using interferon.

The walk about

2008-04-30T21:41:00.000-07:00

Rach has been taking an immune suppressant called interferon. It has some pretty harsh side effects which have slowed Rach's progress. Rach's neurologist decided to reduce her dosage by half yesterday. Today she is much more stable, she seems stronger and more alert. Probably the best word to describe her would be "bright".

During our visit, she took off in her walker without assistance. Yikes, it still makes me nervous. She walked the entire floor of the rehab unit. She was tipsy at times but she seems so much stronger each day.

At one point she surprised me, she picked up her walker and took about 5 steps. She gave me funny little victory smile. I asked her, "Did you know you could do that?" "No", she said with another smile.

She told her therapist today that her goal is to walk without the walker and walk up 14 steps without assistance. Funny thing is she apparently counted the steps on her last visit home. She has a plan.

She also said she "wanted to drive again." "Uhm, Rach, stop walking into walls with your walker and we'll discuss that driving thing."

She is tenacious and has no quit in her. I'm not about to leave any car keys laying around for awhile though.

The beginning

2008-04-30T16:57:00.000-07:00

What are the odds that you go to the doctor with your 2 year old child, she has an ear infection but the doctor notices something is wrong, very wrong with you? Imagine what the phone call is like when, as a parent, you hear your 21 year old daughter is heading to the hospital in an ambulance... from a DOCTORS OFFICE OF ALL THINGS! Gads! he can't fix her? Oh! the thoughts just race in your mind.

At the hospital they scan, test, draw blood, poke and prod... "Sorry, it's nothing more than migranes. Take these, they'll make you feel better." They want an MRI but the hospital can't get permission from the insurance company... you learn alot about managed health care. (that'll be another blog entry

I'll pick up at our first letter (4/4/08) to friends and family letting them know what was going on:

Some of you may have not known that Rachael has been very ill the last couple of weeks. I wanted to give you an update now that we finally have a diagnosis. A few weeks ago, suspecting MS (Multiple Sclerosis) they did an MRI (magnetic scan) looking for lesions on her brain, a primary indicator of MS. When they found no signs of MS they moved on to other possibilities. With a spinal tap, they concluded that she had Viral Meningitis, unfortunately the symptoms never stopped. In a matter of less than 3 weeks, she has deteriorated rapidly and now can not walk, has slurred speech and lacks most gross motor skills in her hands and arms (plus a multitude of other nasty symptoms).
Three days ago they ordered another MRI. Typically during the onset of MS a person might have a few lesions (scarring from the deterioration of the myelin sheath protecting the nerves in the brain.) During the progression of the disease people with MS that have a relapse might gain 1 or 2 more lesions. In other words, the normal progression of the disease may add a few more lesions every couple of years and people can live with the disease their entire life with little impairment as it progresses. My daughter was officially diagnosed with MS by her neurologist yesterday.
My daughters scan showed something very contrary to the normal progression though. The doctor didn't count every lesion but said that she could easily have 60 to 65 lesions (remember she went from zero to 65 in less than 3 weeks). Her official diagnosis is malignant Multiple Sclerosis. This form of MS progresses very rapidly and causes severe damage. If the progression does not stop it can be fatal.
Today her neurologist is taking a very desperate step to hopefully stop/slow the process and move to remission. She will be getting a chemo-therapy drug, Novatrone, that has been useful in controlling this form of MS.
While things look bleak, my family has remained positive and ask that you continue to pray. Our faith remains strong that things will turn around.

This was the start of our daughters battle for her life. It was also the birth of a hope in all of us that we were going to get our Rachael back, regardless of the prognosis.