Yesterday was a typical summer day for a normal family. The last month was a whirlwind of activity. So, having a normal day working in the yard with Phil and enjoying a family dinner on the back patio was pretty spectacular. I went to bed last night and thought how amazing it was just to be working on a project and cooking dinner. We even had rhurbarb/peach crisp from the rhubarb in our yard. It felt like cancer stayed away for a whole day. Today the kids are sleeping and it is rainy in Omaha. We are still tired from our trip out to Salt Lake City to get Jonathan registered for U of U in the fall. We headed back from his orientation and did some hiking in Moab and lounging in Vail. What is starting off as a normal summer is a dream come true for us. I hope Lauren and Jonathan have a normal summer before he heads off to college. Last summer was hell…….It seems like yesterday because this entire year has been about recovering from last summer.
Before we headed to Utah, Phil, Lolo, and I took a trip out to Seattle for two purposes. First of all, we joined forces with Sammy’s Superheroes to make a $30k donation to Fred Hutchison Cancer Center via the Children’s Oncology Group to pay for genomic testing of all kids in Nebraska with Acute Myelocytic Leukemia. We will continue to raise money so that we can try and always cover any kid in Nebraska that gets diagnosed to have this testing done. It will help define the disease and give the doctor more information to choose medications that will specifically help that child. This protects the child from having toxic chemotherapy that does not help fight his specific disease which then is toxic to the child without any therapeutic benefit. This is where our organization Lolo’s Angels, Inc. has started. We are also forming great relationships with organizations like Sammy’s Superheroes, Target pediatric AML, and the Cancer Moonshot Initiative to continue to be advocates for kids with cancer. This is the good stuff that has come out of Lolo’s harrowing journey. We have met some incredible people doing good things.
We also met Dr. Todd Cooper who is a high-risk leukemia specialist. We will continue to use him as a reference, along with Dr. Soheil Meshinchi at Fred Hutchison for Lolo’s case and her progress. We did have Lolo’s genome sequenced and gained valuable information about her specific AML. What we know is AML is not one disease. It is not the same as adult AML. Pediatric AML is a conglomeration of many different types of leukemia and cannot be treated the same. From Lolo’s genome sequencing, we were able to gather information about other drugs that are actually beneficial to fighting her leukemia, should her leukemia return. Lolo is also going to participate in research. Her cells are stored with many other patients cells at Fred Hutchison. Her specific leukemia will have a "research" assay built to test for her leukemia on the molecular level. She can have her blood drawn in Omaha and any of her type of leukemia DNA present in her peripheral blood can be detected. Genomic sequencing is not standard testing done. We hope to change this and make it part of every child’s work up in the future. Being able to detect leukemia by building an assay to find leukemia at such low numbers, as the research assay being done on Lolo, someday will also be standard care for kids. This means the disease would be detected at much earlier rates before it took over the body. When Lolo first came in the hospital in 2012, 98% of her bone marrow was full of leukemic cells (blasts). She almost lost her life fighting this disease many times. Our hope is if her leukemia comes back again, we will know way before it "blows up" in her bone marrow. I am so relieved to find this latest research and try to fund it for these kids. Lolo wasn’t so excited because it means she will have to have her blood drawn more often and not have just a finger prick, but a venipuncture. I think she has had enough with all the dang needles, but you know, like everything else, this is one more think Lolo will have to deal with.She gets mad at me, but I am just trying to save her life. Can’t blame me, can you?
Our trip to Seattle did bring me so much hope for the future for these kids. Phil, Lolo, and I were smitten with Dr. Soheil Meshinchi. You can see him on our video that is posted on lolosangels.org. He is on a mission to save kids’ lives. He has such a great sense of humor and is a brilliant man. I know we will be connected to him for a long time. I hope Dr. Coulter gets to meet him soon. They are both Lolo’s angels on earth. Dr. Coulter and Dr. Meshinchi both have an gift of making kids feel comfortable. Lauren is lucky to have both of these men fighting for her.
We also met a new friend, Julie Guillot. Julie lost her son Zach to AML almost 4 years ago and has been fighting for a cure ever since. She is such a force of nature, but has such a gentle demeanor. She and Michael Copley founded Target pediatric AML. Both the Guillot and Copley families lost their children to AML. I plan to team up with them and join their army. I have so much to learn first, but I will one step at a time.
I have been reflecting on the people that have come our way as we have been by Lolo’s side fighting AML. In the thick of survival you often don’t have perspective. Lately I have been reflecting on the gift of these connections. It kind of just blows me away, actually. Each person we have met seems so appropriate for the time that we needed them. It doesn’t seem like any accident.
We met Taylor Swift at a time that Lolo needed some fighting spirit. She had been isolated so long and had such a rough go of it. Taylor was her muse. Spending time with Taylor was like being in a dream. She was sweet and gentle. She focused totally on Lauren and made her feel the love she needed to fight with all she had. Taylor singing "Fearless" to Lauren was a gift. Her mom’s words of wisdom to not let cancer change who Lauren was helped me a great deal too. I wish Lolo could see Taylor again. I wonder if she knows Lolo’s cancer came back. She would have been so proud of Lolo walking into her first day of school without a hair on her head…..her head held high. Lolo made honor roll both semesters, with chemo brain and all. Taylor would be so proud of Lolo.
We met so many other cancer kids and cancer families over the years also that have inspired us and also made us humble. We don’t have the same experience and we aren’t at the same points of our journey as so many other families. Sometimes it is helpful and sometimes not. We all don’t handle this the same way. Sometimes it helps that others are going through this and many times it is more heartbreaking. I can’t tell you how many children we have seen lose their battle to cancer and specifically AML. We are lucky to know these people.
We have been fortunate to become friends with Congressman Brad Ashford and his wife, Ann. They have brought such a personal aspect to politics for us. Regardless of anyone’s politics, to see people that live their lives to serve is impressive. This friendship brought Lauren the opportunity to meet VP Joe Biden. It has been quite a few weeks since we met him, but my brain has been on overload ever since. It was timely for Lauren because she felt genuine love and affection from "Uncle Joe." My son was mesmerized. I felt like I had a wake up call. I was at a point where I wanted to stop trying so hard to fight AML and wanted to just have a normal life and leave cancer in the dust. I still want to let go of cancer in a big way. But, meeting VP Biden revved my engines. He told me about his struggle watching his son, Beau, suffer. He and I hugged and it made me cry. He knew, just like all these other cancer parents know, the horror of having a child with cancer. It is a horror. It can’t be put on the back burner. He talked about how this is his life’s mission and he can’t help it. Cancer chooses you. You don’t have a choice. I stopped wondering if this is the right thing to do. Thank you, VP Biden. I have a clear direction now.
It seems we have been offered opportunities. With opportunities comes responsibility. I hope we don’t squander these gifts.
I am finally feeling rested. This has given me more energy. I hope in time Lolo finds renewed strength and begins to get her energy back. The rest of this summer she has a plan. She wants to make up for the summer she missed last year. She wants to hang with her friends and not have to do much else until school starts again. I think that is fair enough. I have a plan too. I want to make delicious and healthy dinners for the kids. I want to garden and spend time with Phil. I am also eager to get our Backyard Bash planned (September 30th!). I hope you can come if you are in the area. I know Lolo’s leukemia might relapse again. AML once it finds its way to the skin or other organs is like having a "microscopic, liquid tumor." But, if it does, I feel Lolo has the best team behind her. We know how to keep the best surveillance on this beast. Until then, we are going to have a really nice summer………….and get our army assembled. I feel we have a clear direction ahead. I am not just fighting for my beautiful Lolo….our little sweet friend, Sabrina is also heading to Seattle in just a few weeks. Little Sabrina is not on hospice….she is gearing up for a 2nd bone marrow transplant. She needs all the prayers she can get. There are more kids that will be diagnosed with AML. I need to raise money so they can have the best information available for their doctors to give them a fighting chance. I am not a fundraiser, so I need to get courage and figure out how to do this. Shiz….not my forte, for sure. I am better at being the lab geek behind the scenes. So, if you have some connections, help a girl out….we need some $$$$
Happy Summer! #GoLoloGo