Wednesday, December 18, 2013

Do the Work

This is my husband. He is beautiful. I remember the first time I met him being awed by his deep focused eyes. Since that time he continues to awe me on a regular basis. His focus. His discipline. His sheer talent in almost everything. His love for our children. His love for me.

He is the face of many things. He is the face of Daddy to my children. He is the face of Dr. L to his college students. He is the face of Mr. L the art teacher. He is the face of Coach L, the track coach. He is the face of a loving son. He is the face of a faithful friend. He is the face of a baby brother. He is the face of my husband and he is one of the many faces of cancer.

Mickey was recently diagnosed with colorectal cancer. It is a shock. It seems unfair. It seems we have had our share of stress. It hits us on the heels of hydrops and frankly, we thought life was finally settling down. Mickey recently finished his Phd, moved us to Kansas and we thought life was about to become boring, predictable and perfect. We are still processing this news with an array of different emotions. Mickey hasn't missed a beat and is doing as he always does, moving forward and solving the problem as best as he can without fretting over the stuff he can't fix.

Technical stuff:
It is not metastatic. He will have surgery to remove tumor on January 16 in Witchita by Dr. Noel Sanchez. He will have up to a week in the hospital and then 6-8 weeks recovery. The doctor was clear that this is no easy surgery and he should expect a hard road. After recovery from surgery, he will go on for approximately 6 months of chemotherapy (which he will get in Manhattan) He will get chemotherapy every 2 weeks for 3 days at a time. We meet with oncologist (Dr. Travis Koeneke) tomorrow. The treatments will be with curative intent.

We have a long road ahead but we are trying to view this new journey as an opportunity for growth. I frankly cannot see any way to have cancer and not become a better person because of it. I plan to let this new venture help me become a better spouse and partner. We are trying to see all the blessings that exist within this type of diagnosis. Although the lessons are hard, they are valuable and life changing.

As usual, Mickey prefers not to talk about all of this stuff with many people, so if you have questions or comments or advice, please feel free to email or text or message or call me. I will try to keep the blog updated with latest information to keep our friends and family informed. We are thankful for the outpouring of love and support that you all offer us so often. Please please keep us in your prayers and thoughts as we move through this challenge. strong and courageous. Do the work. Do not be afraid or discouraged , for The Lord God, MY God, is w you. He will not fail or forsake you....1 Chronicles 28:20. 

I love this verse because of two parts. I love that it says 'Do the Work'. and I love that it says 'My God". My dear friend reminded me that you have to put legs to your prayers. We must DO THE WORK. Its often hard work. The road ahead will be Hard work. It will be hard work for all of us but especially for Mickey. I have no doubts and I have complete confidence in his ability to Do the Work.  I also have no doubts and I have complete faith that the Lord, MY GOD, will not fail us.

Thursday, September 26, 2013

Circle it and Cross it Out

This Boy! He is truly amazing. The other day at dinner, he saw a Longhorn skull on the wall and said " this a Georgia O'Keefe?"

He says funny things like "Count Me In!" when we ask if he wants a milkshake and "of course I did", when asked if he did a chore, or "Bingo!" when we answer one of his questions correctly.

He is so smart and has an excellent memory and he constantly amazes us. His little mind is always going and sometimes I have to tell him to relax and calm his mind. I get exhausted sometimes thinking about all that is going on in his head.

He does get nervous and he has chewed his little nails since he was two years old. I actually got out of the habit of even paying attention to whether or not he needed his nails trimmed. The other morning I was holding his hand and I noticed that his nails were actually quite long.
I said "When did you stop biting your nails?"
Boy: "I quit when I crossed it out..."...he went on to talk about other things and I reeled him back in.
Me: "what do you mean 'crossed it out'?"
Now this is where it gets amazing...
Boy: "I just decided I didn't want to do it anymore, so I drew a picture of it, I circled it and then I crossed it out. Then I stopped doing it."

Maybe its because he is mine...but I find this to be a fairly grown up way of dealing with things and a pretty interesting concept for a 6 year old child. Well, maybe not so grown up, because very few grown ups could actually stop doing whatever it was they crossed out.

I think it is incredible that he made this decision to stop nail biting all by himself, and took it upon himself to figure out a way to deal with it without ever mentioning it to us.

He is one insightful kid and I think we could all learn something from his simple concept. So...many months ago by girlfriend taught me to look at what I wanted and circle it. So, I mentally have circled a Christmas card photo for 2013 with Auggie in it since last year. NOW, I have a new way to mentally deal with things I no longer want in my life. Picture it, circle it and then Cross it out.

So, in the wise words of my 6 year old: "Just cross it out"

Here Comes the Dawn

So...the dreaded day approached. I had yet another sleepless night as I tried not to think about last year and focus only on the amazing little boy in front of us. We had to wake early and load the kids in the car for the early appointment in Kansas City...and as we drove, this beautiful site was ahead of us. I truly was in awe of the amazing sun rising. The song, "here comes the sun..." played in my mind and everything just seemed peaceful. It was just another revelation of the blessings and miracles that are new every morning.

Our pulmonology appointment was less eventful than I hoped. They were actually very impressed with our thriving Auggie. Of course, Auggie didn't cough during the visit. But Dr. Escobar did decide to order a chest x-ray. He talked extensively about lymphangectasia and other lymphatic issues that effect the lungs. He said these diagnosis have a wide spectrum of presentations and many remain asymptomatic throughout life. We may go on for CT in a few weeks when we visit again. We also have an appt with a vascular lymphatic doctor on Oct. 7. On one hand, this is a lot of back and forth to Kansas City ahead of us...on the other hand, its a lot closer than Philadelphia was to us during pregnancy, and the outlook is much more positive. So I welcome it. Overall, I feel like no matter what challenges we may have ahead, that every little thing is gonna be alright. So I won't worry. God's Got This!

Since we had to bring the whole family with us, we made a nice day trip of Kansas City. We went to SeaLife and Legoland and ate at a place called Fritz's where a train delivers your food to the table. The kids had a grand time and can't wait to visit again.

When the day was done, we picked up our Grandma Mille who came from Oregon for a visit. We are so blessed to have her with us this week.

Grandma Mille and Emily ride the train at the city park in downtown Wamego

Fritz's Restaurant (turn your head sideways)

Sea Life 

Tuesday, September 24, 2013


Tomorrow marks the one year anniversary of the worst day of my life. It was the day we sat in silence as doctors studied our son.  It was the day that doctors told us our son would not survive. It was the day we were told that the standard of care for his condition was termination, and that would end his suffering and avoid prolonging ours.  It was the first time I had ever heard of non-immune hydrops. It was the beginning of many months of sleepless nights and travel and doctors visits and ultrasounds and searching the internet for hope and praying and begging and pleading and........ This day marked the end of joy in my pregnancy. It took away all of my innocence that pregnancy was this beautiful thing that could be trusted. It took away my innocence that losing a child only happens to other people. It took away the notion that I truly had any control over my life.

I've been dreading this day.  Not only because of all of that, but also because it is the same day we drive to Kansas City to take that same sweet baby boy, the boy who lived, to the pulomonogist. We still know little about the chyle leak that caused his hydrops, or the lymphatic malformation that causes his residual lymphedema. We know he is healthy and meeting all of his milestones. His arm does not seem to hold him back or cause him discomfort. But he does has a very odd cough that occurs frequently and does not seem to be related to any illness. He coughs when he laughs. He coughs when he cries. He coughs when he gets frustrated. Sometimes I think he is fine and this is just the result of having sick lungs in utero. Other time I feel my chest tighten and wonder if I am being naive and that we have many more mountains ahead of us. So...its time to get checked out and find out.

On one hand, maybe this office visit being on this anniversary is a good thing. Certainly we have been blessed with this little man who is affectionately called a "Little Wave" in my support group, due to overcoming an ocean of odds to be with us. This visit does remind us of how far we have come this year. On the other hand, I am scared, nervous and anxious. If you can say a prayer for us, it would be appreciated.

Wednesday, August 14, 2013

Great Things Happen ALL At Once

Many people choose to make major life changes one day at a time...I have somehow accidentally made a lifetime of major life changes, ALL at ONCE!

We have so many changes, all for the most part Good changes, but all happening at once and pushing and stretching me further than I have ever been pushed or stretched. Its hit and miss on how I am handling it all.

ON our recent move to Kansas, with all of our belongings in a 20 ft U Haul and on top of our cars, there was a moment about 3 hours from our final destination when I seriously felt that I could not go another inch. I just wanted to pull over to the side of the road and stay there forever.

Have you ever felt that way in life?

I did at this point.

It wasn't just the driving and the absolute exhaustion from 3 days of travel with four children, a dog and a cat and a flat tire which left us at a truck stop for 5 hours, and the absurdity of having a dog crate tied to the top of my mini van, filled with items, as well as a slide and a tire swing and a red wagon....following my husband who was driving a U Haul towing the Volvo which had all the kids bikes and our bar stools strapped to the top....

It was more than that.

It was leaving behind a great job w great co-workers and fabulous patients...a job that you felt you were really doing something valuable, and headed towards the unknown.

It was about moving very far from all of my family and friends...further than a day trip and further than a weekend trip and further than a mini vacation...I would no longer be "on the way" to anything...I would truly have moved days away from all of my people.

It was being frightened about what financial burdens might await w/ the high cost of living that comes with this particular college town. Its actually quite shocking.

It was having to leave behind more than half of my furniture and belongings. I border on hoarding tendencies. I certainly knew a day lay ahead when I sincerely wanted to pare things down and live more simply, but this wasn't exactly the time I had in mind. Especially without being able to immediately replace many of the items.

It was moving to a house I had never seen.  One much smaller and older than our previous home, where the unknown awaited us.

It was having to find schools, and doctors, and dentists and therapists and a church and friends and a job and a couch and a bedroom suite and a lawn mower and a babysitter and childcare and and and and and.....

I just wanted to pull over and sit on the side of the road and cry, forever....

But, obviously, though that almost seemed rational, it isn't. Even if I had pulled over...I still had 3 hours to go. And after that, I still had to keep moving forward. Life doesn't stop because I feel overwhelmed or tired...the kids still need to be fed and the house still needs to be cleaned and the bills still need to be I just keep swimming, just keep swimming, just keep swimming.

I decided today that it had been too long since I blogged, and that I feel this new journey is worth blogging about. Because i'ts about changing. It's about figuring out how to reach your goals and really defining which goals are actually the important ones. I don't know the answers and I don't know where I will end up in this journey...and I know I'll go through many life lessons along the way...but I know, no matter what, I will be better because of it all.

Wednesday, May 22, 2013

Florida, Birthday, Lymphedema, Graduation, and Manhattan

Hello friends. I know I am getting slack on posting, but things have been a little busy these days. Laughing out loud at just how busy busy is. In March, we traveled to Florida for the kids Spring Break and had a great time visiting with family and friends. While we were there we had the opportunity to dedicate our sweet Auggie. We wanted family to be involved and on Easter Sunday we went to my Uncle Joel's church and had him dedicated by my Grandmother's baby brother, my Uncle David. Many family members were present including two of my Great Aunts, 4 of my Dad's brothers and their wives, both of my parents, my sister and her family. In attendance also was one of the many prayer groups that prayed for Auggie during our battle with hydrops. It was very special.

Upon returning back to Greenville, we celebrated Oliver's 6th birthday with The Critter Keeper. Our house was full of 17 children who all laughed and squealed as the Critter Keeper put on a show to remember with live snakes, giant roaches, all sorts of lizards and spiders. We had a great time.

Shortly after that I returned to work full time and Mickey treked around the States on interviews. He successfully defended his dissertation and officially became Dr. L. He accepted a position at Kansas State University as assistant professor of Special education. This is a very big deal for our family and at the end of July we will plan to cross the Mississippi and relocate our little/big family to Manhattan!!!! Manhattan, Kansas!!!!

Oliver graduated kindergarten last night and we had a wonderful but bittersweet time as we said goodbye to our Shannon Forest family. Our kids have been attending SFCS since Oliver was in K3 and we have made many wonderful friends. Oliver made us laugh out loud as he leaned on the railing during the songs, doing the motions, but in a very laid back, too cool for school manner. When they called his name he threw his head back and walked very purposefully across the stage to get his diploma, almost as if saying "Okay Okay, I'm coming".

Auggie is 3 1/2 months old now. Can you believe it??? Time truly flies when you are having fun. We went to our first physical therapy appointment today and I learned a lot but know there is still a lot to learn. The lymphedema was originally in only his left hand, but now extends to his shoulder and across his chest. She even felt his face is somewhat assymetric. I felt this way when he was a newborn, and no one else really agreed, so at least now someone noticed it as well. If we stay on top of things he should have no complications, although unfortunately, everyone continues to tell us to watch for shortness of breath indicating pleural effusions as well as continuing to watch for abdominal ascites. This is hard to hear because I want to put all of that behind us and not continually have that concern. It was neat learning how to massage his arm and chest and back to help facilitate lymphatic drainage. She fitted him with a very smock, mock sleeve, to get him used to wearing something on his arm...which he will need to get used to. She taught me about the precautions necessary and frankly, they are scary. Basically, he cannot have any puncture, bug bites, burns, sunburns, or injury to this arm or it could cause infection and other complications.
However, she was less convinced that this would never resolve, in fact thinking it was entirely possible for him to "grow into" his lymphnodes.

So, as you has been full and this is why my blogging is sporadic. Enjoy some pictures...until next time.

Eliot at the ranch
Aunt Jenny and Anna before Indigo Girls concert

peach blossoms

Drive in with the cousins to watch the Croods

running to Crazy Pa before lunch

Lego Land

Aunt Marge and Crazy Pa with Auggie
Auggie and cousin Aurora


Aunt Martha
The Critter Keeper

Oliver's K5 graduation

with Teacher Mrs. Harkey

with Teacher Mrs. Todd