Looking Back over the past 5 years

This is the update on put on Simeon's Carepage today.

WOW it's been 9 months since I have updated Simeon's carepage. Life has been busy and has been going so fast. The kids are all doing great. I wanted to update today because today is a BIG day for our family


Simeon at the Lemme Carnival Friday September 22nd 2006. 4 days before diagnoises

5 years ago today our sweet 5 year old Simeon who had just started kindergarten 5 weeks earlier was diagnosed with biphenotypic leukemia. The last week we have been talking a lot about those 1st few days and weeks, but especially about that afternoon in the Pediatric Specialty clinic when we got the news.

For my sake I needed to write down what happened around this time 5 years ago. You might already know the details, but I needed to put them on paper again. It’s therapeutic for me.

Sunday night Simeon woke in the night with horrible legs pains. He cried most the night from the pain, and it seemed no matter what we did to distract him, he was still in pain. In the morning we took him to our pediatrician Dr Boysen to get him checked out. Simeon's coloring and demeanor was off, so the dr ordered some blood work at Mercy hospital. I went and picked Johann up and we went as a family to the hospital for blood work. The doctor told me to talk with his teacher and see if the leg pain he'd been talking about for the last few weeks stopped him from playing with the other kids.

That night Nani and Papa (my parents) flew in for a visit.

The next morning we sent Simeon to school, talked with his teacher about his leg pain. Johann went to work, and my parents, Ammon and I took Corrine to her gymnastics class at the rec center. When we got to the van after class my dads cell phone rang. It was Johann. He said that Dr. Boysen had called him at work and told him to find me and get Simeon to the University hospital right away. He told him "something was wrong with Simeon." The doctor went so far as to call the school and to tell them to not let Simeon eat anything because we were on our way to pick him up for an apt at the U of I.

Something you should know about Dr. Boysen-he's a very laid back type of doctor. Fits my personality. He's not one to put kids on meds at every illness, he likes to let them try to get over their illness first. So when he called and was this urgent, we knew that something really was wrong.

We got to the house and a minute later Johann got there with Simeon. Simeon complained that he was hungry and was not happy about not being allowed to eat. My parents said “Go to the hospital, we’ll watch Corrine & Ammon.”

When we got to peds specialty clinic they had no idea we were coming. The message from our doctor hadn’t made it through yet, and they had no idea why we were there. After a few minutes I got a hold of Dr Boysen to find out what he knew and he just told me that “something was wrong with Simeon’s blood and that we needed to get more blood work done with an oncologist.” It didn’t register with me at that time what an oncologist was.

We went back and met Doctor Tannus. We did lots of talking about why we were there. He ordered some blood work and asked us to wait in the waiting room and he’d come out to talk to us.

After half hour or so, he came out. We were in the 1st row of chairs watching a movie. He sat down and said that his white count, platelets and his red blood cells were low, but that none of those rose a red flag by themselves, but there was something else in his blood work that made him want to do a bone marrow aspirate and biopsy his bone marrow. He brought us back to treatment room A where we met a nurse. The nurse put numbing cream on both of Simeon’s hands and arms, and some on his lower backs over his hips. We were told that it would take an hour to numb so we could go walk around and come back in an hour.

A friend had had her baby the day before so we thought we’d go visit her. We went up to the labor and delivery to see her, and found out she delivered at Mercy. We walked around the hospital, checked out the playground and went back.

We again went into treatment room A, where we were introduced to an amazing lady named Donna. She was a child life specialist and she was there to help distract Simeon during the procedure. The minute we met her, we loved her (and it’s still that way today). Mary Lou was our nurse. An IV was placed in his hand (1st try) and meds were given to put him under conscious sedation, and a bone marrow aspirate was done.

While we were waiting 2 people from our church that were working in the clinic came in to talk with us. I remember Neal Davis (I think that’s his 1st name) was in the room when Dr Tannus came in with results. He wanted to go talk in another room, but Simeon didn’t want us to leave. Donna got him to go with her to pick out a prize. He walked back in while we were talking. Dr Tannus told us Simeon had leukemia. They didn’t know what type yet, that would take a few days¸ but it was leukemia.

We were shocked and didn’t know what to say to Simeon. I asked Neal if he would tell Simeon, and he questioned me about it. He knew I needed to tell Simeon and that I could do it. We told him that his blood was sick and that he needed to stay in the hospital to get some medicine that would make him better.

We asked to go home that night, instead of being directly admitted. Since we live 10 minutes from the hospital they said they would let us go home, with a medicine for his liver.

Simeon right after being diagnoised. He ended with his IV being wrapped in purple. It became his "purple boxing glove!"


We left the clinic, called my mom and asked her if she would order some pizzas because we were going to have a party that night with all the family.

That night we had our families over and had a party to celebrate what we had. We wanted to start this journey with a smile on our faces, trying as hard as could be to be positive and face the challenges that were before us.

That night I talked with a friend Amy and told her the news. She was really sad and asked what she could do. We started talking about the City High parade the next day and that Simeon wouldn’t get to walk in it. He had been looking forward to the parade for weeks. She told me she would make buttons for the kids to wear so that Simeon “Could walk in the parade too.”

The next morning we went up to the school to tell them. We had a quick meeting with his teacher and the principle. Mr. Bacon’s (the principles) room was filled with leopards. He stood up, picked one off the top of his shelf and handed it to Simeon to take with him. (We still have that leopard today!)

We then headed to the hospital. I took a picture of Simeon and Johann walking in. They both have smiles on their faces. We went to the pediatrics specialty clinic. Mary Lou came and got us and walked us up to the temporary floor where the oncology patients were while the brand new multi-million dollar state of the art floor was being built. We got checked into our room and the whirlwind began.


Our family as we left the next morning (9-27-06) for the hospital.


Walking into the hospital on Sept 27th. Both of them are smiling!


The next evening the 27th was the City High Homecoming parade. Our friend Neil asked the dtrs if because Simeon hadn’t started any chemo’s yet, if he could have a 2 hour pass to go walk in it. The pass was approved. Getting that pass was like winning the lottery for Simeon. He was able to walk for 2 blocks with his friends. Those 2 blocks meant the world to all of us! All his friends had buttons on that said “I’m walking for Simeon.”


Simeon, Nick Cronk, Timmy Simmons and David Fillmore at the City High Homecoming Parade.


On Friday Sept 29th, Simeon had surgery to get his port-central line placed, and later that afternoon he got his 1st chemo infused through his port.


Simeon being silly before heading back to get his port in. We were watching the movie "8 Below" about husky dogs in Alaska as we waited.


After surgery showing off his scar and new port-the bump beneath the scar under his skin.

That night the doctor came in to tell me what type of leukemia he had. My mom was sitting by the window when they told me. She asked how to spell it, and she wrote it down for me. They gave me a book about leukemia, and that paper my mom wrote his diagnoses down on is still the bookmarker.

Its 5 years later and I can remember it like it was yesterday.

I found these pictures from the first few months that I just love and wanted to include.


Thanksgiving 2006 I love how even though Simeon is sick and life has been hard the last few weeks, all the kids are smiling and laughing and having the time of their lives.



Bald Boys-Johann was shinny bald the entire time Simeon was. That's Love!!!


Our 1st Radiothon-Simeon was on the radio to raise money for the Children' Hospital.


Today Simeon is a healthy and strong 5th grader. He has caught up in all areas except writing at school. He loves math, science, and reading. He super active and loves to play sports. Looking at him today you’d never know how sick he was just a few years ago.

Tonight we’re having lasagna and pizza, much like our spaghetti and pizza dinner we had 5 years go to celebrate. We’ll celebrate all the wonderful blessings that have come out of this trial. We had met so many amazing people, and have had some amazing opportunities in the last 5 years. The latest being a commercial for the University of Iowa’s Touch down for kids. It started airing lastnight. Simeon is the star of the commercial, who is making a comeback after being really sick in the hospital. It makes me tear up every time I watch it. It’s showing on KCRG channel 9. Maybe you’ll see his face playing football and smiling-he’s almost always smiling.

If I could go back and change things so that Simeon didn’t get leukemia-I honestly wouldn’t. It made him and our family who we are today. It’s made us stronger, closer and better able to handle the trials that come our way. We’ve learned to not sweat the small stuff, we’ve learned how to be a true friend to others, and we’ve learned to look for blessings even when things are really tough!

I can’t not tell you about the other kids too. Corrine is in 3rd grade and getting so tall. She is quite the runner and her and I are going to run a 5k in November. She has become such a social butterfly. Ammon is in 1st grade. He has just taken off with reading. He learned to ride his bike and swim in the deep end this past summer. Rebecca is 2 and is a talking, climbing, counting, potty trained little monkey. She has super ringlet, bouncy, curly hair. Our last kiddo got my curls-it’s been a proud moment for me!!

As I’ve said many times before-THANK YOU for checking up on Simeon, THANK YOU for praying for us, THANK YOU for being our friends, THANK YOU for cheering for all the kids fighting, THANK YOU for crying with us as we’ve said goodbye to friends. THANK YOU for being you. It’s all of you that have kept us going the past 5 years!!

The Smith Family
Johann, Kari, Simeon, Corrine, Ammon & Rebecca