Our family truly has much for which to be grateful. It has been easy for the last few months to focus on all of the hardship that Lauren has been through. In fact, truth be told, it has been hard to actually focus on what we are to be grateful for and it takes a lot of our effort to do so. Luckily, we are able to and it gives us energy to keep powering on. Powering on is exactly what we need to do.
Lauren is up in bed right now resting for the morning. She has a cold and is worn out from trying to keep up with school. However, she has actually kept up in school. Emotionally, it has taken a toll on her and she is tired of always being behind and fighting just to be at school. The honeymoon is over. Her fight in the hospital was all about getting to start school as a freshman at Marian High School. She did that, to our amazement. I have been meaning to post an update on how she has been doing, but it has been a whirlwind for us and I haven’t been able to keep up myself.
After she finished radiation, she was very sore and tired. Most of the last few months Lauren has made it through the school day and has come home and slept until dinner. We have woken her up for dinner and then we have spent the evening helping her get her homework done. I have settled in to my position teaching Biology at Marian. I admit, I also have been exhausted. Lauren was at Children’s from April 13th until July 25th, with a week at home in between the month long stays. It was grueling for her. It was grueling for me. We didn’t really have time to reflect on it or rest up. It seems all we did was sit in that room so it seems odd that it is so exhausting, but it is indescribable. She came home and then a couple of weeks later, I went back to work. I hadn’t worked since she was diagnosed in December of 2012. The opportunity to work and the position at Marian was too good to pass up. But, I underestimated my exhaustion. I also underestimated, or forgot, how hard it is to get Lauren back on her feet. I also cannot describe how hard this is on her both physically and emotionally. She was mythically positive the last time she left the hospital. But, my sweet girl has had a lot of heartache and disappointment. She isn’t jaded, yet. She is still the most positive person I know…most of the time. This relapse has taken its toll on Lolo. That is what I feel I am fighting against, in addition to the awful disease of AML itself.
Lauren was excited to get to Marian and had dreams of all these clubs and activities she was going to participate in. She loved her “freshman retreat” where she was able to spend the night at the school and be a typical freshman bonding with the seniors and learning the ropes of the Marian sisterhood. She has become, in my view, a very good student. Despite the short term memory loss, the trouble focusing, and the huge gaps in her education because of extended hospital stays, Lauren is independent and thoughtful about her homework. She adores her literature teacher (great sense of humor and lots of spunk), she does well in history and French (Mrs. Salman is pretty awesome), she is a great Biology student (Mom is her teacher), and feels she finds her “zen” in art class surrounded by upper classman (Mrs. Bauer’s personality cliques with Lolo’s)….she is even enjoying Algebra…but, I think Mr. Cunningham is hard not to enjoy. Overall, she is happy at school and usually has a smile on her face. However, she doesn’t really have the energy to do much else. She still gets together with friends, but has to slow her schedule down just to keep up. I am seeing signs that she is tired of having to fight so hard just to be normal. She is finding it to be tremendously unfair. I am trying here and there to distract her from this. My cheerleader spirit is dampened, but somewhere in there, I find the fire needs to be re-ignited. Jonathan and Phil are cheering her on as well. Jonathan has a lot of spirit in him lately as he is excited about heading off, probably to Montana, next year and starting life as a college freshman.
A couple of weeks ago we had a small scare. For me, it was a big scare and slowed me down a great deal. Lauren was having excruciating pain in the leg that had radiation and surgery. It was the leg where the leukemia had relapsed. The pain was so bad, I took her to the ER. They ruled out a blood clot and did an MRI. They found a site that had some cellular changes and on exam there was a mass in her muscle. It was above the site where the leukemia had returned. It was 5 mm large. We went for a surgery consult with Dr. Raynor and we were looking at having it removed and biopsied. It felt like the other lump and for about a week I could not breathe. I thought her leukemia had once again returned. It was in the middle of parent teacher conferences, so the week was extremely busy. We went in for the surgery consult, but by that time the area did not have the hard lump in it. It was less painful and it looked like whatever had shown up was going away. We still don’t know what it was. If the leukemia had returned, Lauren would have gone straight to bone marrow transplant. After we got home from the appointment, I went straight to bed. I was exhausted beyond belief. When I woke up, I just laid there and cried. I realized we had been working so hard just to get our family back and get Lauren into school we had not really processed all that had happened to her over the last year. I found I cried a lot that entire week. I would cry when I drove or any time I was alone. I felt like all the tears that I bottled up just came flowing out. How could we go on and live this way always fearful that it is coming back? With AML, we will always feel that way. I knew this last time, but Phil didn’t. He felt like after all she went through the first time, it had to be gone and she was a miracle. I knew how insidious AML was and felt like I needed to be on guard. That is why I didn’t go back to work. But, I too started feeling that she was going to be fine and she was a miracle. March 14th was an assault on her and an assault on our hopes…..for a while. After crying for a couple of weeks, I realize we do have to live with this reality, but we also have a choice in the way we think about it. Our reality hasn’t changed. Her reality hasn’t changed, but she is depending on us more than ever to be positive and hopeful. It is so easy to let the darkness overtake you. But, it is better to strike a match, then to fear the darkness….or so the quote goes!
When Lauren made it through her hospital stay, I was more determined than ever to fight. I wanted to fight to raise money and run bone marrow drives. I wanted to get back to our life. Thanks in large part to Tonya & Robert Ortman (our friends…parents of Caroline Ortman..Lolo’s buddy)…and Joni & John Metzler (my sister and her husband), our backyard party was underwritten to host a fundraiser to start Lolo’s Angels. We formed a board and a Jr board. We began a campaign to raise money. We were going to be a “sidekick” of Sammy’s Superheroes. Our first fundraising events were for that purpose. We will fund a grant with Sammy’s Superheroes for pediatric AML research. After the party, we had Lolo’s relapse scare and everything had to be paused. We have re-circled the wagons with more determination. My friend, Bill Bianco, has taken us on “pro bono” and is setting up Lolo’s Angels as its own 501c3. We will still partner with Sammy’s Superheroes on projects….they are awesome and that friendship will continue. But, we found that we need to have a singular message and mission. We also need a very clear message to approach some companies and patrons to fund pediatric AML research.
In addition to helping Lo start school and become a Biology teacher at Marian, I have been phoning researchers, hospitals, and agencies that raise money for leukemia. I was so hopeful and thought surely that someone had to be doing some research or have some amazing clinical trial that would save these kids with pediatric AML….with pediatric AML that has relapsed….with hard to treat pediatric AML…..monocytic AML?…..leukemia cutis AML…..Guess what? I was wrong!!! There isn’t. At least that is what I have found. I am not done and I have not lost my drive. I just need to focus on Lolo’s Angels becoming its own 501c3….we have to write our by-laws and form committees and get all our ducks in a row. In the meantime, we are working to do mainly pediatric awareness campaigns with our Jr Board and try to get the ball rolling with some bone marrow drives again. We have also partnered with Nebraska Elite Volleyball to have a big fundraiser on December 13th at Lolo’s Chicken & Waffles….details to come.
In the meantime, on a whim, Lo took a volleyball lesson two weeks ago. She has lost a lot of her muscle mass and misses being physical. She took a lesson with Caitlyn Rueth, who was one of Lolo’s first coaches ever….way back in 5th grade, before leukemia struck Lolo the first time. Lauren had the biggest grin on her face the whole time. She also amazed me. She nailed that dang ball. Lauren has really good serves and even though she hasn’t really touched the volleyball since last March, she still had it. Afterwards, she said she still wanted to try out for regional club volleyball. I was hesitant and actually more nervous about Lo hurting herself than whether or not she would make a team. Tony, the head of Elite said to go ahead and let her try. He said to have her take a chair and watch herself though. The tryouts are quite physical and long. But, Lo didn’t take a chair. She went for it. She had strength and held her own. She wasn’t half as fit as she was last year, but she was just as determined. She couldn’t walk for a week very well after, but she MADE HER TEAM!!! Go, Lolo, Go!!!
So, in essence, we have had some major hiccups, but Lolo is still in remission. We are all a bit wobbly. We have a lot to accomplish with Lolo’s Angels. We have to get our paperwork straight and find our voice. But, we will. There are so many wonderful people that have donated and have been patient with our process. We will get it all together. I sure appreciate the support and the willingness to stick with us even though we have lost our momentum, temporarily.
I just put the turkey on. I have a lot to finish up. We are heading out to the retirement home to see Grandma Polly. She had to move from her assisted living into nursing care. Today we will have Nanny and Alesia over and have a relaxing day. I am so thankful we are home and not at the hospital.
Our next direction is to find some help. There are people out there with so much talent and resources. I need to be bold and ask for more help. Lauren has much to offer this world and so do some many kids like her. Mark Zuckerberg has agreed to help and I know we have people just like him in our community. We are going to be reaching out to him….and Taylor Swift……and Ellen….and Joe Biden….and to Green Plains…and to the Benioffs…..to Joe Ricketts….Susie Buffett (our neighbor)…..and every single person that will listen. What Lauren has suffered should not happen to another child. She should be able to someday say she is actually cancer free. It just isn’t right. Our country is full of brilliant medical doctors and researchers….I want to give them a chance to cure this. It just has to happen…..and then I can truly say that I grateful. Until then…..there is still some fight in me because that sweet little smile and those orange giraffe freckles have me smitten. I hope you will continue to fight for her to have a chance to be a kid!
Go, Lolo, Go!