So… about Miss Lolo….here is the update:
The mass in her leg is gone. Dr. Raynor removed it in July and she has no leukemia in her leg. Remember-her leukemia relapsed as “leukemia cutis” in her leg in 2016. The mass came back in the same spot, but it was scar tissue with nerve tissue wrapped in it. After she healed from surgery, she had to get caught up on some of her yearly testing and went in for what we thought was a routine echocardiogram.
The echocardiogram was not normal. She is now 2 years out from her relapse. Her last chemo received was on July 2nd, 2016. The initial echocardiogram showed a decrease in her heart function through a measurement of what is called her ejection fraction. We then went to Seattle to be seen at a Survivorship clinic and have an evaluation from Dr. Eric Chow. My hope is someday Children’s Hospital in Omaha has a comprehensive survivorship clinic….more about that later, but for now, Lolo was seen in Cardiology in Seattle to have another echocardiogram with more extensive measurements. The outcome was the 2nd echocardiogram confirmed the previous results. Lolo has latent cardiotoxicity due to all the chemotherapy she has been on. She has permanent damage to her left ventricle.
Lauren now has a wonderful Cardiologist in Omaha, Dr. Jean Balwegg. She studied at St. Jude’s and has a special interest in children with heart damage after cancer. Lauren has spent the last month being seen in Cardiology and having additional testing done. This will go on for the next 6 months until we get a better picture of where Lauren is and how much she can heal and protect her heart. She had a stress test and it was stressful! She is now on heart medication. I still can’t process in my brain what all of this means. I realize we have been fighting so hard to keep Lolo on this planet, we haven’t been able to think about how to heal her afterwards. She is Lolo…she looks beautiful and healthy and no one can imagine what she has been through by looking at her. But, she is so tired, so extremely tired. School and life are difficult and she is trying her best to be 16. She is working her tail end off keeping up with school. The heart medication makes her feels dizzy and light-headed. Next week she is supposed to double the medication to get to the therapeutic dose that she needs to be on. This all in the middle of finding a homecoming dress and keeping up with Algebra and Trig. Yet, in the middle of this she is so breezy and easy. She is so much braver than I could ever be.
So what does this all mean? It means we have another fight ahead of us. But, we are all too tired to fathom how to fight this. We don’t understand it yet. I keep thinking it goes back to Phil’s military perception of this fight against cancer. This AML is a terrorist. It has stolen our peace and it keeps attacking our child….a true terrorist because we are afraid all of the time. No matter how we try to have down time, we have severe battle fatigue. But, we also are a fierce bunch and there is nothing we love more than our children, so we will fight to the death on this one. I just don’t understand this enemy and in between I want a life….a beautiful life for my children. I haven’t written about her new diagnosis because I am confused and I don’t have the right words. I also was so angry for a while I couldn’t speak about it. Then, I was hurt and felt pathetically weepy. If you can see the pattern here, we are in the stages of grief once again and it makes me so mad. I don’t like being mad and I am not great with anger. However, it serves a purpose if we can focus it. Sometimes anger immobilizes people are makes them “all thrust and no vector” as Phil says. But, channeled, anger is good. It is like a heat seeking missile…..and so am I when my child is threatened. Hahaha…..I love when I get all worked up and decide to go postal on this beast. I need these moments of false bravado to fuel the energy I need to face these things, so excuse my false confidence. I realize we are the mercy of something bigger than any words I have. Yet, this public pep talk I am giving myself serves a purpose too. Our family has a choice to take this new information and sit paralyzed, collapse from the weight of it, go into total fighting mode, or find some balance….We are choosing to find some balance. She is stable. It can get worse or it can stay stable. The only thing we really have control over is her fitness level and her overall day to day health. We don’t have control over what happens in the future to her heart. We have to control the controllables. Dr. Balwegg said that Lolo needs to be at her peak of health to compensate for the damage to her left ventricle. Over time, the rest of her heart has to work so hard to make up for the damaged cardiac tissue, that the rest of her heart could fail. The heart will stretch out trying to pump so hard to make up for the region that isn’t working. She will always have lower heart function. But, she could also be at the top of that lower heart function rather than the bottom. This is what we can do. She started back with her adorable and dedicated trainer, Brent, last week. Despite her fatigue, she has to train and get her muscles strong again. We decided that if she has to train, then we have to also. So, Phil and I got our tired old behinds to the gym this week and set up a schedule for ourselves. You know the old saying…”you have to walk the walk” and “they (meaning kids) follow what you do more than what you say.” We kept waiting until she recovered from her cancer to get her in peak performance. Lolo was so frustrated that she wasn’t bouncing back. Then we find out that she couldn’t because her heart was damaged. Now we know why she was getting so winded walking up stairs and just getting through her school day. We are learning more and more about a heart healthy diet. This is another thing we can control. We can decrease stress in our lives. We can decrease pressure of the daily grind. Once again, our purpose and our life has a fine focus. Each day is a gift.
Lolo’s Angels was on a hiatus for some time while we were trying to figure this all out. We have an incredible Board of Directors. We keep making connections with people all wanting the same purpose…to help kids with cancer to survive and thrive. So, we are getting all pumped up for our Oktoberfest event. We haven’t had as much time to promote it. We have such a nice event planned. I hope people come and will help us spread the word. We are going to enjoy the night and raise some money. Some days I don’t want to do another thing related to cancer. But, there is so much to do and so many kids to help. The energy for this comes from the connections with our Board, the Jr. Board, and the families that we help in some way. There is nothing but love that comes out of it and that feels good, for sure. We are seeing our work translated into good things and that propels us forward. Please check out our website at lolosangels.org to see the progress. More than anything, if you can, please come to our Oktoberfest on October 5th!~
Today is the Memorial Service for my dad, Marshall Adams. As many of you know, I was raised by my step-father, John Ekwall, and my mom. My dad lived in Idaho, where I spent my summers growing up. He was a country club golf pro. Our family could not go to Idaho for the service as we are trying to keep Lolo well rested to get her used to her medication and keep up in school. We are going to try to facetime so that we can be present in some way at his service. My sense of adventure comes from Marshall. All of the Adams kids have it. We love the wilderness and the extreme. We are all from Idaho and grew up skiing, golfing, fishing, water skiing, or any reason to be outdoors and having fun. Both of my kids have inherited this love of nature and adventure. Jonathan is currently at the Gauley Fest in West Virginia with Kodi Rafting (the white water rafting company that he works for). He texted me yesterday and said he just had the “best day of his life.”
Luckily, despite this setback in Lolo’s health, our family still can have days like Jono’s. Life is grand and beautiful. Every day there are moments that make the hard times worthwhile. I hope we have more beautiful moments this year than hard times. This last week I spoke to my dad. He knew he was terminal. We did not know he would pass away so quickly. He said to me, “I have had a good life.” That was a golden moment to me. He had a lot of hard times in his life, but his summary was that he had a good life and he was at peace with the thought that his time was up. I admired him for his gratitude for the life that he was given. I was thankful also that I have had the life and the experiences that I have had. I am not at peace or ready to let go of life. But, I am also hopeful that when I face my own death, I look back at a life well lived. I want to know I expressed all the love that I had in my heart. I struggle many days with anger, bitterness, and hurt. I cannot fathom how my precious children have had to suffer with something so painful. Sometimes I think I cannot handle the burden of it all and feel desperate each day to just get through it all unscathed. Then the Adams in me comes out fighting…..I am going to know on my deathbed that I gave my kids everything I had so that they could live the best life possible. I might not have much to give them monetarily. Stuff doesn’t matter much to us, but experience does. We love adventure and we like to get out there and see the world. Right now we are planning a trip for our family for when Lolo graduates in 2020. We are dreaming of Croatia…or New Zealand…or Iceland…or Argentina. We are checking out deals and saving. I hope they get to have some adventure, but most importantly, that we get to do some of these adventures together as a family!
Bless Her Heart!
#GoLoloGo