I still have not taken Lolo’s first day of school picture. I am starting to wonder what happens to my well-thought out plans each day. I really think it might happen tomorrow. I want her to be in the right frame of mind. Seriously. I have been trying to make our morning drives blissful. So far, kind of not working. But, I want her to have relaxation and peace each morning as she heads off to school. It takes a lot out of me. I have the need to question her….did you study for French or did you remember that form? Did you bring your lunch? How are you feeling? So, I stop. She is stressed in the morning. She doesn’t wake up that well. There are a lot of transitions for her-way too many to manage. She also has so much to overcome. Yes, still. Recovering from cancer takes a brave determination, just like fighting it. Now she is training with Brent and her muscles hurt. She also has concentration issues and frustrations over studying. We do not shy away from these challenges and we address them head on, otherwise they are not resolved. So, we are trying to eat healthy, get good sleep, go to the gym, and help her with these stages of recovery. They involve grief. Huge grief. Right now, I think we have hit the anger stage…oh yeah, baby! Of course, there is not a guidebook on any of this. However, we have now been through it TWICE….yuck!
There is not a lot of information out there to help know how to help kids recover from cancer. Some of the information is just not going to be helpful for Lauren. All kids are different. All cancers are different. I have to trust my gut instinct as a mom. She is now angry. I have decided as long as she isn’t hitting me or anyone, actually, she can be angry. I am trying not to correct her too much. She definitely has parameters she has to follow. But, I say "let it out." For God’s sake, if anyone deserves to be angry it is Lauren. I am not that good at anger. I have learned to stuff it and smile. I don’t really think that is very healthy. When she isn’t angry, which is most of the time, I also let her lead a bit. So, in the mornings, I am quiet. I just drive mostly. Same with when I pick her up at the end of the day. I am quiet, which is not my forte. But, I am. Eventually, when she settles down and enjoys the quiet, she will start talking to me. This is golden. This is the good stuff. It is worth the wait. Those conversations are what I look forward to each day.
So, that is why I haven’t taken that picture I want so much. She hasn’t been ready. It feels too rushed. She needs the space and the quiet. I will wait.
I need to learn to be that way about my campaign about pediatric cancer. I don’t know how to describe it. I think I am angry too. So much of our family life has been stolen. I think I am grieving as well. The one thing that helps me is to work hard trying to find a solution and improve the odds for other kids. The beautiful faces of children that have been lost to this disease are constantly present in my mind. One family that we met through our friend Father Weeder is still in the fight. The Gehrings are related to Father Weeder. He visited them up in the hospital and visited us. Then, we were able to meet them too. Right now, Emma is really struggling. We don’t see them much because we are both working hard raising funds for cancer and trying to raise our families, but they are our good friends and we care about them so much. Emma had to start chemo again. Now, her skin looks as if it has been scalded and her liver is having issues. They have been fighting, like us, for 4 1/2 years. The difference is, Emma is still not well.
I know I talk about cancer a lot. Well, on here I do and on social media. At home and with my friends, I talk about my kids, Game of Thrones (hate it, but can’t stop watching it), my garden, my mom, life, etc. I actually don’t talk about cancer much to the people that are close to me. We have heard enough. I feel desperate some days because I have found a direct link to how to make a huge difference for kids with high risk leukemia. When we were in the hospital we met a family, the Andersons. Their daughter, Sabrina, has AML, like Lauren. We met them when Lolo relapsed. Sabrina’s AML would not go into remission. She had chloromas like Lauren did…that is leukemia in the skin. But, Sabrina’s wouldn’t go into remission. I helped Amanda decide what to do at that point and we became friends. They had to go to Ohio and have a bone marrow transplant. When they came back last fall, Sabrina had developed not only AML, but ALL too. Amanda told me they had put Sabrina on hospice in January with only a month or so to live. I felt frantic. It was the same time that I had become acquainted with Michael Copley, Julie Guillot, and Dr. Soheil Meshinchi in Seattle. I had been talking with Michael and Julie because they formed Target pediatric AML and I wanted to consider partnering with them. I have always felt that all of these AML families in the US need to pool their resources and fund the best research out there. I have also felt genome sequencing would help us actually nail down this disease so we knew more about it before we go to drug testing trials and other research. Anyway, I called Amanda and asked her if she was up to try one more thing to help Sabrina. I told her I understood if I was invading her privacy and if she was done trying. She wanted to try, so I connected her with Michael Copley and Dr. Soheil Meshinchi. Sabrina was able to go into remission, she had her genome sequenced, and is now in Seattle recovering after her 2nd bone marrow transplant. She has gone from a 0% chance to a 50% chance. Please keep her in your prayers.
It was at this point, I didn’t sign my contract to go back to teach. I knew I had to make a difference in any small way that I could. I have put all my eggs in this basket. We have already funded this project with a joint donation with Sammy’s Superheroes for $30k in June. Now, we are getting ready to host our big Backyard Bash. I have even talked Dr. Soheil into coming out to speak at this event. I want to have such a good turnout for him. He is the real deal. He is one of the most inspirational people that I think I will ever meet in my lifetime. You have to remember, I have met Joe Biden (oh how I love him) and Taylor Swift (amazing!). I don’t want to disappoint Soheil. I want so much for people to meet him here in Nebraska. But, now I am so nervous because our ticket sales are slow. In fact, I am panicking a little. I know I shouldn’t. It just means I need to get out there and tell everyone about this. I know it is because it is personal. I go to bed at night and I worry I am having a party that no one will come to. There are so many fundraisers….it is hard to ask people to come to another. I feel like Kevin Costner in Field of Dreams…if you build it, he will come. Well, I have built it, I need to not lose faith that they will come!
We had so many people praying for Lauren when she was sick and I will be forever grateful for that. We had people that cooked meals for Phil and Jonathan while Lolo and I spent all of those months in the hospital. Kelsey, sisters of Marian vball girls that we know, did a casual day to help Lolo have some gift cards to decorate her new bedroom when she returned home for the first time. However, we never accepted money for our family for a reason. We had savings that kept us afloat and there were other people that needed it more than we did. We needed people to pray for Lauren more than anything. We also have not used any of the money we have earned for Lolo’s care at all, that has never been our reasons for fundraising. But, now I am asking for people to help us. Not for us. Not for Lauren. Please help us increase the odds for kids that need us to help them. Please come to our Backyard Bash and bring your friends. Please come and hear Dr. Soheil speak….enjoy our backyard (Phil and I have been working all summer to get it ready), have some great food, incredible music by Nikki Boulay & DJ Meredith Garwood, have some beer or wine, great conversation!
I am building it, I hope you will come!
Tickets are on sale at lolosangels.org. You must have a ticket purchased before the event. Please buy yours ASAP!