The Road Not Chosen

How About A Friday's Feast?

Appetizer
What is your favorite herb or spice? Easy choice. First I'll go with herb: Cilantro. Fresh and yummy. Can't ever put enough of it in salsa, ever. Spice: garlic and more garlic. Triskit has these new yummy roasted garlic Triskits.... Make everyone around you eat them so you won't offend one another's sense of smell. Great with pepper jack cheese.

Soup
Name a song you like but haven't heard in a long time. Well, with Rhapsody every time one pops into my head I just scoot on over and listen to it. For Christian music I'd say "Lion of Judah" by Jason Upton. A very inspiring and triumphant song. Secular music-wise I'd have to say "The Sad Cafe" by the Eagles. It was the last song on their last album (The Long Run) for the next 15 years. It came out in 1983 and pretty much summed up my mindset about L.A. and my life right before I got saved that year.

Salad
If you were to take just one minute to write down as many things as you can think of that you need (not want) to do, approximately how many things would there be? Oh, puleeze don't make me do that!!!! There is always way too many. That's why I'm doing this instead of anything on my list. And it's after 11PM to boot.

Main Course
Tell something interesting about one of your family members (nothing scandalous, please, just something unique). I should probably try to think about something my cousin Ramona has done so I can freak her out as she is reading this entry. But I'm a good cousin and won't do that. Let's see...Harold is double jointed in his knees and can bend them kind of backwards like a stork. His dad could do this also so it was always highly amusing to see them standing side-by-side.

Dessert
What's the latest you've ever stayed awake? Ummm, 28 hours. Univ. of California, Berkeley, 1977, helping my friend Gary work on his senior architecture project he had to get done to graduate. A bunch of us drove up from L.A. to help him make little trees and cut out styrofoam buildings. Hey, he was one of my best friends or I never would have done that!

All's Well That Ends Well

I've been looking forward to the day that I could write these words: Evan is fine. What a journey the last 9 months have been! To briefly summarize our visit to the hematologist at Children's Mercy Hospital let me begin by saying they were a wonderful team of people. We learned more in 2 hours than we had during the previous months with the other hematologist. Evan let them draw his blood with no problem. He simply put on his headphones, cranked up his CD player which had the latest United Live CD in it, squeezed his eyes shut really tight, and started singing. Since it is an environment that caters to kids, snacks and drinks were offered, which he loved!

Dr. Nevill concluded that Evan does have a very, very mild case of polycythemia and is a long way from needing any treatment for it. She gave us some symptoms to watch for that would indicate it was getting worse, which she doesn't expect to happen. No bone marrow draw is necessary as they use the blood test for polycythemia developed by Johns Hopkins. She feels that the pesky extra chromosome that causes Down's was complicating things a bit. The pathology report indicated no blast cells (which means no leukemia) and no mutations in the nucleus of his red cells (which means no other icky diseases lurking around). Her recommendation was that we continue regular blood tests for a while just to keep an eye on things.

We were so happy we celebrated by going to the Cheesecake Factory! The only other thing we have to take care of is Evan's last hip surgery which should be next month. Now we can get on with other things like dentist visits and eye doctor appointments. My friend Patty said Saturday that it was too bad we didn't go there first but she could see that God had taken us on quite a journey of faith. I agreed with her. Even though it has been very stressful, we can see a growth in Evan's trust in God during this time. He has really learned to rely on God to help him in difficult situations, something he had not really understood before. We can see this impacting other areas of Evan's life as well.

In conclusion, this road we did not choose to go down has born wonderful fruit in our son's life and in ours. I can say with all truthfulness that I am glad for the trial and another chance to experience first-hand the faithfulness of our God.

On The (Bumpy) Road Again

Personal Stuff - What a week! I called Evan's pediatrician Monday to ask her for a referral to Children's Mercy. She called me back on Tuesday. I felt like I kind of had to justify our decision to get a second opinion from a different hematologist, but I finally got my point across. Basically, 9 months is long enough to mess with something that might turn into leukemia. We need to know.

Wednesday the pediatrician called back to say she had contacted Children's Mercy's hematology department. After reviewing Evan's lab reports they wanted to see him & we were told to expect to stay a couple days. Yesterday, the hospital called and scheduled Evan for next Thursday. We were thankful they could get him in so soon!

I thought I was doing fine until last night when I had a horrible nightmare about Ev. I didn't go back to sleep until 4AM! I felt so overwhelmed and really couldn't figure it out. I know we absolutely need to get a second opinion. My friend Michelle, whose youngest daughter survived a battle with leukemia, said today that maybe I'm afraid that something will be really wrong. I think she's right. Our family is SO fried with medical trips and hotels and all the stuff that goes with it. I just keep pushing into God's grace, which is thankfully abundant!

Blog Business - I haven't posted very regularly here and probably won't for a couple of weeks. I sincerely miss writing and reading your comments, but I think my attention is better spent elsewhere during this time. Also, I don't really feel like I have much worth blogging about at the moment. I am really feeling most at peace puttering around home, working on lesson plans, and enjoying the fall weather before winter sets in. So I'm going to focus on being a teacher - bookkeeper - mom - wife and set my writer hat to the side. (Although NaNoWriMo is sneaking up on me...) If you want to drop me a line, feel free to click on the "e-mail me" link on the top left-hand side of this page.

Talk to you soon and thanks for your prayers.

To Remember

It seems everyone everywhere is talking about this fateful day five years ago. I awoke to it this morning, drove to work listening to it, and yes, talked about it to my World Lit students in class. We were supposed to talk about something else, something more, well, literary. As I prepared for class I wrestled over discussing 9/11. But then I really felt like it was right to do.

On the spur of the moment, I found some e-mails on MSNBC.com from people reflecting on what it meant to them. So I printed 8 of the e-mails out and had my students read them in class. I reminded them that literature is created because someone is feeling or thinking about something so intensely that they can't just keep it bottled up inside. We talked about the plethora of books, movies and articles that are a result of what happened that day. Then, with a thunderstorm rumbling overhead, these kids who were in Junior High 5 years ago, read aloud people's thoughts. Some people were angry and bitter. Some were at peace. Everyone, though, was a changed person for better or worse.

I then spoke of God and His plan for us, how we always wake up each morning expecting that we and those we love will live through the day. I urged them not to miss an opportunity to share God and His plan of salvation with someone who God has brought across their path. And lastly, I reminded them of the brave people who died so that others might live, just like Christ did for us.

So today I am grateful for the blessings God has given me and mine. I am grateful to live in a country that is more good than evil, where we can speak our mind freely, and where we can worship God without fear of being thrown in jail. And today I say a prayer for the families who lost someone 5 years ago today. May they find the peace that only God can give.

Not What We Wished For

Evan had an appointment at the hematologists at University Hospital on Thursday afternoon. She wanted to examine him and do some blood work of her own, rather than having it done here in town. So we made the familiar nearly 2 hour trek once again. I'm losing track of how many times we've made this journey since January!

She was a bit puzzled that Evan appeared to be in good health from a visual standpoint, as his red cell count continues to rise. Her main concern was than he was going from macrocytosis (enlarged red blood cells that stay the same size, they are just bigger than normal) to polycythemia vera which is a bone marrow disorder. So they took some more blood (after holding Evan down yet again) and his hematocrit and mean cell volumes continue to climb.

Now here is where it gets tricky for us. The doctor wants to do a bone marrow draw, which is the only way to confirm polycythemia. But she wants to maybe wait a month or two. This is what she has been saying since March yet Evan's counts keep rising bit by bit. To us it appears as if she is just not very sure of what to do. She seems a bit ... waffle-ly.

The problem with polycythemia is that it is very rare for someone under the age of 60 to have it. I understand that this may throw the hematologist off a bit, but she is at a very large teaching hospital that has access to huge resources to investigate problems like this. It doesn't appear to us that she is utilizing those resources effectively. This is not giving us much confidence!

Harold and I talked last night & have decided to get a second opinion. We are going to call Children's Hospital in Kansas City next week. They have a well-regarded Down Syndrome clinic and also specialize in blood disorders. We spent a lot of time there a couple of years ago when our friend's daughter was battling leukemia and were always impressed by the doctors and staff.

So we will try another avenue in hopes of getting information that seems more solid to us. Obviously something is going on in our guy's body & we just need the Lord to direct us to the right people to help figure this stuff out. Several people have asked me if we are worried. There just doesn't seem any point when we have no clue what we are dealing with. It may be that it turns out to be something minor rather than major. We do know from experience that no matter what happens, God will give us the grace and resources that we need.

Silence Is Golden

I haven't posted in several days have I? It feels like its been months. Evan's canceled surgery took a lot out of us as a family, emotionally and physically, so I just now feel like I'm getting my feet back under me. Thank heavens for 3 day weekends!

Evan started his senior year of high school on Monday. That brought a wealth of emotions to the surface for me. (Or maybe it was the exhaustion.) I remembered the first day he went to kindergarten, so cute in his uniform, with a Barnie backpack and a lunch box as big as he was.  Now here he is, eighteen years old, shaving, husky voiced. The time goes by like water in a stream.

We had his last IEP meeting on Wednesday. The IEP coordinator asked if I wanted to bronze his last plan! I am just glad to be done with that bit of bureaucracy, which has never gone smoothly for us as Evan being in a private school complicates things a bit for the school district. He has always had wonderful teachers in the public school, though, for which we are grateful.  Now we are planning in earnest for the days when he will no longer go to school but to a job. A lot of time, effort, and planning has been done by many diligent and wonderful people to get our son to this point. It should be quite the year!

We are enjoying the waning days of summer, the cooler temps, and the way the sun slants through the trees at a lower angle than in the heat of summer. Our garden is being prepared for the fall & I'm thinking of switching my clothes out for my winter wardrobe. Tomorrow we will have a bar-b-que with friends. I hope you all have similar plans. Have a great holiday weekend everyone!