Lexi's Lollipop Leukemia Walk

Tonight was the Leukemia and Lymphoma Society's light the night walk in Des Moines. My cousin organized a team this year to remember my dad and honor Alexis in their fights against ALL. My two cousins, my sister, my uncle and one of my sister's friends participacted. As a team, we raised over $3,800, which we were blown away by. We had childhood friends, high school friends we hadn't talked to in years and good friends and family donate. With each donation, we were floored and honored with the generosity of our friends and family. It warmed our hearts and meant so much to us for each person to care that much. 

What was one of the most heartfelt things to see was the children in our lives. One of of cousins daughters gave $6 of her own money. Then, Alexis's cousins gave $20 of their own money, as they wanted to help find a cure for their cousin. Alexis's cousins wanted to raise some money on their own, so organized a Lexi lollipop stand where they sold lollipops and raised $279 to donate! During that, one of Alexis's cousin's friends brought down his piggy bank filled with money from the tooth fairy and said he had been waiting to spend this money and wanted to donate to the Lollipop stand. There really are good parents out there raising exceptional kids! 

The team wore Lexi lollipop shirts that my cousin had designed in Alexis's favorite colors, teal and purple. They carried white balloons in memory of my dad and yellow balloons in honor of Alexis. 

One of my best friends from college also walked with her family in their neighborhood, since they couldn't make the walk in Des Moines. So blessed to have such an amazing friend in my life! 

Although this sucks to go through, it is so inspiring to see such support and generosity from people. There really are amazing people in this world. 

Our real little lollipop had a non-eventful day. No signs of additional seizures yet. Although a little tired today, she seems to be handling things ok so far. Let's hope she is not only licking this leukemia, but the seizures as well. 

Waiting

Alexis went in for her next round of chemo today. She got not only the vincristine and methotrexate in her IV, but she also got put under for a spinal chemo. After much debate, the doctors decided to go back to methotrexate as the medicine of choice in the spine. There is a ton of data to show that methotrexate does a phenomenal job of combatting leukemia. Since Alexis's symptoms don't match up completely with how neurological side effects from this drug normally present and sometimes neurological effects occur with one treatment but not with any additional ones, they wanted to go back to what they know kicks this cancers butt. So, she got the methotrexate in her spinal fluid today along with the IV chemos. 

So far, she seems to be handling the three chemos ok with no additional side effects occurring. However, the last time it took almost a week to present. So, we watch carefully for additional seizures of any other signs, including slipping into a coma. Such fun to have such a big range and to have to risk those grand side effects to davd her life. However, we know how brave shd is and how she is fighting this with such fierceness that we can't let our fears get in the way. We have to trust and focus on how her body in general is dealing with all this chemo in a remarkable fashion. She is truly amazing! 

Naked

What can we say, the kid likes to be naked! We prefer when he does this at home. Let me amend that. We prefer he doesn't do this at all, but preference for this behavior to occur at home rather than in public. He doesn't always oblige and while I was wiping one of the other kid's bottoms in the the restroom at Lexi's school, I turned around to find him shirtless in the stroller.

He also really likes his dress shoes and has been found to be out in the backyard climbing the swing set with them (yes, he's third child and some battles we just don't have the energy to fight right now). Again, we prefer he doesn't wear the dress shoes, but we really prefer he doesn't do it in this combination. Whatever third child, wants, though, right?

Medicine

Alexis has gotten a lot better about taking her medicine, but still isn't the biggest fan. So, we have come up with a routine that means she usually takes it and swallows it. If she doesn't, it is hard to know what she spit back out and how effective the medicine is. Not wanting to under or overdose her and be 100% effective with her medicine, we devised a process:

1. We have to get a glass of water ready and waiting. 
2. Both of her brothers (yes, she's a diva...one isn't good enough), have to come over and hold her hands. 
3. She then drinks some of the water. 
4. Next, she pokes the medicine. 
5. Finally, we do an "open, close, swallow" cue
6. She opens her mouth for the squirt and takes it. 
7. She follows the medicine up with water. 
8. We repeat for every other medicine she is on.

This process can sometimes take 3 minutes and sometimes up to 10. We do this usually twice a day. Needless to say, we are sometimes late places. 

Daisy

We are very limited in the activities that Alexis can do, so when the opportunity to join Girl Scouts, or Daisy at this age, came up, we jumped on it. Alexis had her first meeting tonight. They made bracelets and sit upons. I voluteered to stay the first time. So, I got to see that Alexis had a blast and even made some new friends. So fun to see her personality continuing to emerge!