Fails

Mom got up and dressed the kids this morning. In an attempt to make Dad happy, she dressed them in Iowa gear to cheer on the Hawkeyes...and, they didn't play. Fail number 1.

Then, after dinner, we decided to roast marshmallows and make smores. Conner had a great time roasting them and Gavin inhaling them. He wasn't the cleanest eater, though. Fail number 2.

However, we had a great day as a family, so we'll still consider this a winning day!

Lexi's Lollipops

My cousin Sandra is organizing a walk in Des Moines for the Light the Night Walk for Leukemia and Lymphoma Society in honor of Alexis and my dad. We are so honored that someone would take the time to support us and do this in her honor. My sister and family is joining them as well, and we only wish Alexis was healthy enough to travel that far from home to join as well. Instead, we will have to support from afar.

My sister's description melts my heart: After losing my dad to leukemia, I didn't think that anything worse could ever happen in my life. Now we are fighting for my 6 year old niece who was ironically diagnosed with the same leukemia that my dad passed away from. Children dealing with cancer is not something that anyone should have to go through. As an aunt I would do anything that I could to save my spunky, uno loving, coloring expert, beautiful niece that has already fought too many of life's battles to mention. Please consider donating as a small sacrifice to the normal life you are dealing with, as a family battles to make sure their daughter gets the best care to have a chance to live her life.

In case anyone wants to donate, here's the link: Lexi's Lollipop's Fundraising Page 

Quilting Love

When Alexis was diagnosed with leukemia, it is hard to know what to do. There are no actions you can take or things that can be said to make the situation better. Sure, comforting words, care packages, and support help you function and bring you such joy that there are people out there that care and want to make it better. But, the reality is that nothing can make this situation better except the doctors, and we have to trust in that. So, we focus on comfort and things that will make the process easier. We have been so blessed by friends and family with their creative ideas and care packages that really help lift our spirits.

Soon after her diagnoses, I wanted to speed up something that I had always planned on doing. When my dad passed from leukemia 8 years ago, and we were clearing out the house, I couldn't stand the thought of his clothes going to Goodwill and someone else wearing them. So, I cut them up instead and sewed them together in squares. Then, I realized I had absolutely no idea what I was doing and who was I to kid that I could just pick up an intricate craft like that. So, I turned to my aunt who is an expert quilter, and she took over the project and finished the quilt for me. After that, I always knew that I wanted to take the kids clothes and make them into quilts.

With the diagnosis, that time period sped up. Unfortunately, my aunt passed away a couple years ago from cancer (have we mentioned how much we hate cancer and it robbing us of so much and such wonderful people!?!?!!??), so I couldn't go to her. Although I would have loved to head up to Heaven to discuss the process with her and my dad, I knew that wasn't possible. So, we had made a similar quilt for a friend that lost her little boy several years back. I went to Dawn who made her quilt, and she was so nice and said she would get on it right away.

The process of going through the clothes to pick out the ones we wanted to include was fun, as we got to think back to all the crazy times in her first two years. I sent them off and was nervous about the results, as anyone that knows me knows that I have very high expectations. When I received the quilt, I was blown away! Dawn had gone to so much care to incorporate every detail of the clothes. She even incorporated a design instead of my boring one piece of clothing per square. It is so fun (and therapeutic) to remember her shirt she first walked in, the first day of preschool outfit, her Disney shirt, and even that burp cloth from the dreaded bottle days when we would fight her. It turned out amazing. I just hope this can bring us some comfort during the hard times while we lean on the doctors to make this all better.

Cluster seizure

After being seizure free for a while now on this medication, Alexis had a couple short seizures right together at school today. I talked to the nephrologist as a result, and he said sometimes these clusters can occur. He went ahead and increased her medication. He also is going to have a conversation with her oncologist to see about the methotrexate doses. To continually be choosing between great treatment and trying to minimize the side effects sucks.

The neurologist also wants to repeat her MRI. Sometimes changes in the brain from methotrexate have a delay and dont show up right away, so they want to take another look. 

As the neurologist put it, we have come a long way from seizures every minute to now. He also said these seizures are not doing her any harm. It's all about focusing. So, we will focus on that now and try not to worth about the rest. 

Good timing to help fight was a package from some high school friends with Cancer Ninja gear. Bring on the cancer and side effects, as we are ready to fight it as a family!

Shots

The boys had their yearly checkups today. They both checked out fine with no major issues and were looking good on their growth charts, and they were both predicted to be above six feet tall. They were both due for one vaccination each and then we got the flu shot for both of them.

Conner ended up skipping his one vaccination, as it contained a live virus, which Alexis can't be around. So, Gavin went first and got two shots in his leg. He screamed, but got over it rather quickly. Then, it was Conner's turn. He bravely pulled up his sleeve and said, "I'm ready!". The nurse asked if he wanted to sit down and he informed her he was fine standing. So, she pulled out the needle and prepped his arm as he watched the whole thing. She told him to look the other way when she was about to insert the needle, but he kept bravely looking. Needle was inserted, and his brave face melted as he said, "ouch, that hurts." He cried a little, but recovered nicely. I think he had seen Alexis get do many shots that he thought it was no big deal. He now has a new appreciation for what she goes through all the time. 

Pedal the Cause

When Alexis was diagnosed with leukemia, we immediately got support from her school, The Moog. One of the supports was a teacher at her school that is battling a brain tumor now for several years. We talked one afternoon about her experience and how chemo made her feel, etc. She has been a true fighter, and that is so encouraging to see.

Shortly after her diagnosis, her family started Pedal the Cause, a local bike ride where 100% of the funds go to Children's hospital for cancer research. 100%! That's where Alexis gets her treatment. So, when the director of the Moog, and this teacher's aunt, asked if she could not only ride in Vicoria's honor this year, but Alexis's as well, we were honored. 

The race was Sunday morning, and the had a designated spirit station for anyone from the Moog that wanted to come out and cheer. Since Alexis can't be in crowds, we left her home with grandparents and Brian and I headed there with a pleading Conner. There were three other families there to support te director and teachers ride. We thought that was so nice in and of itself, but then they started showing pics of their kids who had ridden in the kids race the previous night in Alexis's honor. Well, that opened the flood gates. To feel such support from people you don't even know that well. It was overwhelming.