At A Loss For Words
I have been at a loss for words for so long. Part of it is moving into unknown territory. The other part is changing personally so much that I can’t express myself well. Lauren might be experiencing the same thing, but I am not sure.
I know for all of these years that I have been writing about her experience, the one thing that I do know is that it has been hard for me to really describe what she is going through. As she has grown older and has been able to express herself more, I realized I had to be very careful about saying that I know how she is feeling.
Many times she hasn’t really known. I also had to be careful about sharing her experience to help others at a cost to her privacy. This made me just stop writing for a while. The most important aspect of everything we do is to do what is best for Lauren.
Currently, Lauren has recovered well from the surgery on her leg. The surgery took away the intense pain she was having in her calf. She still has some nerve pain and her leg is still healing, but she is doing really well. We are so thankful she is not dealing with the chronic pain she had last spring. In addition, she is slowly adjusting to her heart medication. That is the area we are still the most unclear about. She has another cardiology appointment on February 12th to do more testing and see where her heart function is. She is still very tired and mostly tired of being dizzy and exhausted. I can say that we are now 2 1/2 years out from her last treatment. She is struggling to recover and has not recovered as well as the first time she went through AML treatment. I guess that makes sense, but it is very frustrating to her. I don’t blame her. She is proud that she is missing less school this year than she did last year. Thank Goodness! High School is hard enough, but missing so much school made it feel overwhelming. Lolo has to work so hard at math. We are finding out more about that as we go also. She is actually good at math, but she has so much missing information. She does well on new concepts, but has missed too much of the foundations of math through her years of fighting cancer. So, although she understands trigonometry, she doesn’t understand fractions and simple things like decimals. This summer we will be tackling some of that. She will also do an internship this summer at the Fred Hutchison Cancer Center on cancer cells, maybe even her own! She will get a chance to work in the lab where researcher Dr. Soheil Meshinchi is hard at work discovering new treatments for pediatric AML. #GoLoloGo
Lolo is considering becoming a pediatric oncology nurse. She thinks she would be good at helping other kids like her. She definitely has the compassion for kids with cancer. She also isn’t fazed by people throwing up or other gross things, but she is wondering if she can handle seeing others poked by needles. One of the new things we are going to try is hypnotherapy. Although Lolo sailed through her treatment and all the of the needle pokes, we realized she was great at disappearing through the event and putting her mind elsewhere. She rarely cried and never complained. But, now when she thinks of the needles going into someone’s skin, she is queasy. Our plan is to have her nurses during her clinic visits and the Child Life specialists at Children’s start helping her to look at needles and become more comfortable with them. She was very successful in calming down during procedures and meditating. She often disappeared to the beach. Now, she is going to try to be present. Typical Lolo…she pretty much has decided she wants to become a nurse so she is going to make herself get over her needle phobia in order to do it. Yep, that’s my baby. She has also decided to tackle math too. It is a start. If she doesn’t like it, I have encouraged her to try it out and see what becomes of it. She has a lot of gifts and I am sure she will find the right fit. It will be fun this spring looking into colleges for her. She has a dream of going to University of San Diego. The campus is a dream come true and I would love it. I also like the idea that she would be back in California and near our friend, Michael Copley…aka cancer warrior. But, I don’t like the idea of her being so far from me and we really can’t afford it right now. The biggest dilemma for me is not wanting to clip her wings. Of all people, she deserves to fly!
As far as news about our family lately; we are together. Jonathan just had surgery to his shoulder to repair a shoulder dislocation and tear to his labrum. He had 3 anchors put in his shoulder. He is recovering at home with us and little pup, Ruby…a dream come true for our family. We needed more time together, that is for sure. Jonathan hopes to return to Colorado with Kodi rafting in May for another season of white water rafting. He is considering going to paramedic school at some point and also wants to work up on the ski slopes in Colorado next winter. We love having him home and look forward to a fun spring break trip with just the four of us.
Our organization, Lolo’s Angels, continues to grow. The growth is more than I had hoped for. But, it means a lot to us to be able to help other families with kids with cancer. I can’t quite find my place in everything yet. I knew exactly how to fight for Lolo’s life. But, that kind of pace can wear you down. Now, I took a part-time job to bring some money in and allow me to run our organization too. The balance is hard and I can’t quite decide what my true purpose is as of yet. I know that running the organization has changed me a lot. I have given up the security of our own future to do something I believe in with my whole heart. But, I don’t always know if that is the right answer. I think I trust that will come into focus over the next year or so. I am very appreciative of the incredible friends we have made in the childhood cancer world. Some of these friends are mentors and I can’t sing their praises enough. Brave, fearless, souls like Julie Guillot, Michael Copley, Dr. Soheil Meshinchi, Dr. Don Coulter, and other amazing people in our own Omaha community such as David Spence, Jeremy Stanislav, Susie Nelson, etc. I am in awe of all of them and I have so much to learn. I know my input is small, but we are moving mountains together, all of us. It just takes persistence and tenacity….and a whole heap of humility.
Phil and I are hitting that age where he is starting to look at retirement. I have used up most of my retirement to pay our bills. So, I need to recoup that, but I also think the answer is somewhere in the middle. Phil and I have changed so much together over the years. Lolo’s illness has put us back on the same page as far as our beliefs and interests in this world. Her illness has challenged us to walk the walk and live the life we really want to live. What is cool for us is it is making us more courageous to do that. Surprisingly, we are both old hippies at heart. Jonathan laughs when I say that because he thinks my image of myself as a hippie is a stretch. We are jumping into organic gardening, but kind of stink at it. We will expand our gardens this year and we are going to look at partnering with a few local restaurants that want some of our produce. Hopefully, we can barter with them for a few free meals. If we aren’t successful at that, we will maybe just improve our health some. We still absolutely love to travel and have some destinations in mind for that. We are letting go of so much “stuff” as we realize we like to travel light and aren’t interested in buying things, but would like to have more travel experiences with the kids. We definitely like to volunteer, but need to find more balance with that also. I have to say the one area I miss is getting to know people better, grabbing a glass of wine or having dinner with another couple. We have become somewhat reclusive because Lolo’s Angels and time with the kids takes all of our time. Like most people our age, we are sandwiched between the needs of our aging parents and our kids who are getting ready to flee the nest. The coolest part is that cancer did not take us down. We are still together and we have our kids. We haven’t ever really wanted much more than that. But, I would like to carve out some time and reconnect with friends.
The future for Lolo is still uncertain. If you are the praying type, we hope you continue to pray for her. July 2nd, she will hit 3 years in remission. That is a huge goal for us. She relapsed last time just over 3 years in remission. The date we would like to see is July 2nd of 2021. July 2nd is the last day she had chemo in 2016. It is also the last day that our little fellow AML warrior, Krew, had his last day of chemo. It is his mother, Steph’s birthday. This day is the day we have chosen to have our “Summer Blast” Teen Dance to raise money for pediatric cancer research. In 2021, this is the date that some could say she is “cancer free.” The truth is AML is just not the kind of cancer to be cancer free. One of the kids in our peer group relapsed at 5 1/2 years and another at 7 years. AML is the most brutal monster I know….so are some of the other cancers too, btw…like DIPG…the worst. But, at least the odds could be in her favor to hit 5 years free of AML The other prayer we ask for is that her heart has the capacity to heal and become stronger. We were told we don’t know what it will do….stay the same? get worse? or improve? Please, God, let her heal and let her heart become strong. My hope is that it heals and she doesn’t have to stay on cardiac medication forever. My hope is also that pediatric AML drugs change and they find treatment that is less cardiotoxic. There is a percentage of kids that survive AML, but die due to heart complications after going into remission from the leukemia. The chemo for pediatric AML is especially toxic to the heart. Not all cancer drugs are. Right now, Lolo is right on the border of having normal heart function. She has decreased function and the medication is there to protect her heart from further damage. She is only 16 years old and has a heart of gold. She deserves better.
Thank you for your continued prayers and support! We are so lucky to have so many people that care about Lolo and helping in any way for other kids like her.
If you would like to help us at Lolo’s Angels, we have two big events coming up. First, we are in the midst of our “Snow Day Toy Drive.” We have information on our Facebook page and on lolosangels.org. We have a special interest in providing toys, games, and activities for Teens. Many donations for these items decrease in winter and they are especially sparse for Teens. We have an online fundraising campaign to buy iPads for Teens with long hospital stays to help them stay connected to their learning and to pass some time during difficult procedures. We will deliver all the items to Children’s Hospital on President’s Day. You can ship toys or drop them off, or donate money for us to buy more items on the wishlist provided by Children’s Hospital.
In addition, we have a great event coming up on Sunday, April 28th. Tickets will go on sale on February 15th for $50.00 a person. We are proud to announce our first annual “Search For The Cure Scavenger Hunt” to be held at Film Streams Dundee from 12:30-5:00. Teams of 4-6 will compete for prizes as the “race” to upload pictures of their team (and a homemade “mascot”) to compete for prizes. At the end of the “race,” approximately 2 1/2 hours, to visit landmarks and businesses from the Old Market to Dundee, participants will meet to view the pictures uploaded, have some beverages, and food provided by The Kitchen Table. Prizes will be awarded to teams with the most points, best mascot, and best picture. We will also have drawings for door prizes. The cost of $50.00 per participant includes entry into the race (signed up with a team of 4-6 people), an event t-shirt, 2 drinks, and delicious food! Please look on Facebook: Lolo’s Angels, Inc & lolosangels.org for ticket information on February 15th, 2019. All proceeds will be donated locally for pediatric cancer research.