As parents our life ebbs and flows as our children grow. Our life is definitely in transition. Instead of fighting it, Phil and I are going with the flow. In fact, we have stopped fighting the changes because there have been so many and take each day as it comes. Our biggest transition this year was adjusting to having Jonathan away at school. Three more weeks and he comes home for Thanksgiving. We have been out to Utah three times since June. It has been fun exploring Salt Lake City again. I am originally from southern Idaho, so SLC is not new to me. But, it has changed a lot and I only knew it from brief visits. Jonathan is mostly interested in the terrain around the city. He likes hiking and rock climbing, but it very eager to try out his ski pass this year. There are many slopes to choose from. He is studying Pre-Law and Environmental Science. It seems like a good fit for him, but our family misses his great sense of humor and his cynical view throwing us a few curves here and there. Lauren misses having her upstairs neighbor. But, we are happy because he is happy. It is easier to watch them fly when you know they are ready. I do wish his high school years had been smoother. I wish we had been able to focus on him more and not have the big “C” dominate the last 5 years of our lives, especially Lauren’s.
This year, Lolo is a sophomore. Her hair is about shoulder length. She is having a pretty good year, but still not quite herself. She would like to get fit again and be as she was before she relapsed in 2016. I am trying to be a positive role model and get to the gym with her, but so far we have had a few setbacks this fall. Phil and I have made some big changes in the way we cook as a family. We are learning new techniques and have added a lot more fish and vegetarian dinners. Lauren is a pretty good cook also and is interested in new grains and healthy eating. We hope to continue on this path. I just signed up for a 3 month online cooking course with Forks Over Knives. I will let you know how that goes. I think this last time through cancer took a toll on all our bodies, mostly Lolo, but Phil and I both need to take care of our health this year. I think the stress and lack of exercise has not been a good combination. So, we are going to rally as a family and get our bums moving! Lolo and I have a goal of getting fit before her school trip to Europe. I am going along, but I need to get in better shape so I am not lagging behind the 11 day whirlwind trip through central Europe. It is fun to have a goal and I am excited to get to be part of this experience. It seems almost magical. I am trying to immerse myself in the idea that we can actually live a normal life, but for a family like ours, that takes steady practice. It isn’t because we are pessimistic, it is just our experience. It is hard to believe in your future, when that other shoe is always dangling….winter is always coming!
Many people ask what Lolo’s prognosis is. I have to be honest, it makes me uncomfortable, because we don’t know. We really don’t know. What we do know is that things are looking pretty good. She is more than one year out of treatment and her blood counts remain good. She hasn’t had any signs of the leukemia returning in her skin. But, you have to remember leukemia, once it is able to spread to other tissue is like a microscopic tumor. Lauren has been in bone marrow remission since her first treatment. She is also healing very well. Although, she is still extremely tired. This week was a great illustration of what it feels like lately. Lauren started off having a pretty good week, but has been fatigued and having some headaches. We try to keep track of that and so we were planning for her to get some extra rest. She has also been having some issues with her memory going blank and she gets very frustrated about that. It could all be related. But, she describes it as knowing things really well, but then having a time when she can’t find words and it is as if everything she knows has temporarily disappeared. She was doing great in school and then the last two weeks, she has hit the wall. This week was a great week for me…until….I started in-processing to do research at UNMC. I am excited to work with the staff there and see how this year goes. As Lolo gets more stable and we continue to get more positive reports, I will work more hours and eventually try to step into full-time work/research and advancing my degree. I hope to obtain my PhD in cancer research. However, I have learned to not get too excited about anything yet….just hopeful…and patient. Until my sweet Lolo is on firm ground, everything else needs to wait. After my first day in the lab, I can say that the people seem wonderful and it definitely right up my alley, but even that first day took a pretty sharp turn later in the evening. Lolo had a visual migraine, we think. She is having some lights and spinning in the periphery of her vision. At first it was upsetting and annoying to her. We turned off the lights and tried to figure out what was going on. She had it on both sides of her visual field. After a while, she started having severe pain in her head. She was crying and holding her head. We stayed in the dark for a while. I was trying to decide whether or not to drive her to the ER. I got her some motrin and the pain was still there, but not as severe. I had her stay in the dark and try to rest. She was exhausted and fell asleep. She woke up in the night and the pain wouldn’t go away. She had to stay home the next day and we called oncology. I was scheduled to run a bone marrow drive the next day and I couldn’t decide what to do. My panic mode was on high alert because I am worried about brain damage due to the chemotherapy she had. Her chemo was extremely toxic and at very high doses. Last time she had some peripheral neuropathy and had pretty severe nerve headaches and also pain in her feet. She has that now, but these visual distortions are a new thing. Evidently, she has been having them at school here and there, but she thinks it is sensitivity to the fluorescent lighting. I was able to talk to Oncology and still run the bone marrow drive. I kept Lolo at home sleeping. She slept most of the day and took pain medication. She will see an opthamologist to determine what is happening with her visual field and we will hope it is just a migraine. I am pretty good at watching Lolo’s symptoms and knowing the difference between aches, pains, normal teenager illnesses and concerns that her cancer is coming back. I am not an alarmist, however, visual distortion and severe pain in her head is a red flag. It is probably just a migraine, however, this is a typical feeling for family’s of kids like Lolo. You can be having the best day ever and even a few hours without thinking of the “C” word and there it is. It just has a way to creep into your day and scare the bejesus out of you again. Kind of sucks, to say the least. Lolo is aware of what to be nervous about and what not to worry about. She is the star of trying to move on and not worry, but she is also very smart. I wish we could have consecutive cancer free days that lead to weeks and years…..please, God, make this nightmare go away forever. Make it go away for all of these kids. We will know in a couple of weeks what this new issue is. In the meantime, we will be going about our days making the most of them.
Our organization is one way to do something positive. It has moved from an idea and a need to some moments of pure joy. Our board of directors at Lolo’s Angels are awesome people…so that is one aspect that is awesome. Our Jr Board is incredible. I was sad to leave teaching, but I realized that ship had sailed. I loved the time I spent in the classroom at Marian. I love the subject (science is pretty spectacular and obviously interesting!), but I want to give any extra time I have to our non-profit, so I realized I couldn’t devote the time it takes to teach full time. Lolo’s Angels has formed some partnerships with organizations like Target pediatric AML, DKMS, and many more. Together we are moving the ball forward in research and areas that support patients, such as bone marrow drives and awareness. It has moved beyond volunteering part time to our mission and passion. It is our life’s work now and there isn’t anything ambiguous about where we are going as a family. We don’t live and breathe cancer, but it has certainly chosen us. We do spend time feeling sad about it…totally normal. We do worry about Lolo…constantly even though we try not to….but, we spend most of our time being so thankful to do simple things like cook dinner together and pick Lolo up from school. We also spend time running bone marrow drives or working on our fundraisers. It is stressful, true, but mostly it is amazing…..and I know that term is like the awesome of the 90s…but….amazing it is. We hang out with people that give their time because they care about other people. They are there to save lives and make a difference. We aren’t hustling down Wall Street or heading towards success in ways that will be written about in Forbes magazine. But, in small ways….we are helping people. Many times it feels like two steps forward and three steps back because it is cancer that we are dealing with. Since August we have had 3 local girls die of AML. One just a couple of weeks ago and it is heartbreaking. Just this last week a little girl died in Seattle after receiving a break-through treatment. This one hit us pretty hard because she was a little fighter and I just had a soft spot in my heart for this courageous girl. I did drive around Omaha and cry out loud for Miss A. But, it also made me more determined to find some way to continue on this path. Our financial goals and life goals are changing. We are going to have to make a shift in the way we live in order to do this, but we have to do better for Ava, Sawyer, Clare, and Lily…..we just have to…..this just IS NOT OK.
I met a cancer warrior just recently. He said I am still in fight mode. Fighting all the time can wear you out. I wonder if I will ever not be in fight mode. But, I am a mama bear. I want my kids to have a beautiful life. Not a beautiful life in the sense of having stuff, but I just want them to be healthy and experience the love of the people around them. I shouldn’t have to fight for that, but I do have to and until they are safe I will have to continue to fight. So, in the meantime, I need to keep my strength, my faith, and my surroundings positive. It’s Maslow’s Hierarchy of Needs baby…right? We must feel safe in this world before we can move to other plains. I think that is why our country is in a snit. People don’t feel safe, for whatever reason it is. They can’t worry about much else until they do. I didn’t understand that feeling before Lolo got cancer. I have been a ballsy kind of girl. Moved all over the country and put myself out there. I wasn’t a fearful kind of person. But, when what you love more than anything is threatened, fear creeps in. Fr. Weeds says that “Fear does not come from God.” He isn’t trying to say that we are possessed by the devil, but he is right. When we live in fear, we put up our dukes and fight. We are in defensive posture. Being in a defensive posture keeps us from letting the good in….so, we also fight God. That is my take on it. I am trying to let down my defensive posture and let all that is good in and only fight when I really need to fight. I see so many other cancer families worn out from fighting and I just want to wrap my arms around them to. I notice that when I am doing something to help, even as simple as bringing ice cream to kids in the infusion center or running a bone marrow drive, that defensive posture just relaxes and I can spend some time just loving on some people. I like that better. I also find I love the cancer research work. I have notebooks full of publications about research on AML and other types of cancers. They are highlighted and bookmarked. It doesn’t feel like a job moving this research forward. It seems like everything else that came before this was just preparing me to do this one thing.
Please share our video…..Zach Sieff did such a nice job on it.
#Together We Are Stronger #GoLoloGo