A Year Ago This Week
A year ago this week was the last day of Lauren’s 8th grade year. It was such a hard day; I guess that is an under statement. She was getting ready to go back into the hospital to start treatment again for relapsed AML. We knew it was going to be treacherous and even though she had been through it before, we had forgotten how sick a child gets when going through AML chemotherapy. She was to check in on April 13th and spend the next month in the hospital. She was to do that for until the end of July or the beginning of August. If she did not relapse in her bone marrow, only in the skin, and not in any more skin sites, the decision was that would be the end of treatment. But, if the chemotherapy did not prevent the leukemia from erupting into her bone marrow or spinal fluid, she was going to have to go to bone marrow transplant. So, the journey began.
This is where we picked up last year with www.calltowater.com. Every detail was written about, so I won’t go back through her harrowing journey. However, it was a true miracle, when she left the hospital for the last time on July 25th and was told she could possibly start her first day at Marian High School. She needed to do radiation treatments to her leg and recover. Then, she was to be seen each month to see if she could stay in remission. To this day, there is no guarantee that awful AML is going to stay away. Unlike most pediatric cancers, AML has a very high relapse rate. It also has the worst prognosis of any pediatric cancer group according to the NIH (National Institute of Health). Our Lauren is truly a miracle child. She is our light.
I stopped writing on www.calltowater.com at the point that I went back to work to teach high school Biology at Marian High School in Omaha. We were too overwhelmed and I think Lauren wanted some anonymity. I couldn’t process my thoughts at this time. We were back in survival mode, but in a different way. This is where Lauren started her freshman year of high school. As I look back, it was a godsend that I was able to be there to get the big picture of how school ran at Marian. With the help of all of Lolo’s teachers and her wonderful school counselor, Mrs. Galecki, Lolo made her way through school each day as long as she could. Some days she had to come home at lunch. Some days she had to sleep in until lunch and then go for the 2nd half of the day. Every day in the first couple weeks of school, she went straight to University of Nebraska Medical Center for her radiation treatments. I have never seen a child so brave and determined. It made me weak watching her try so hard. I was so glad to be home with my family, but I have never in my life been that exhausted and emotionally drained. I started my new job still in shock that we had to put our sweet child through her exhaustive, painful, and scary treatment. I hardly slept in night because I was still in my mother bear mode of staying vigilant. We didn’t sleep regular hours in the hospital and I was still on that strange schedule. The first part of school we did a big walkathon. When Lolo relapsed I had barely finished my physical therapy to rehab the reconstruction on my Achilles tendon. I abandoned the PT when she went in the hospital and sat by her bed every day for 4 months. My muscles atrophied and when she left the hospital, I was in horrible shape. When I started my new job, I could relate to Lolo’s weakness because my legs hurt during the week from simply walking around. It made me have a lot of compassion for Lauren. Her legs cramped and hurt from getting her muscle tone back. The leg that she had to have surgery on to remove the leukemia that had metastasized to her leg hurt. This area had to have radiation and she began to have excruciating pain in her calf and other muscles. At one point she had a knot in her leg and we worried that the leukemia had spread to another spot. We needed to calm down and trust that the other shoe was not about to drop.
The fall was spent in a fog just getting her back in school. She took her school pictures with not one hair on her head and held her head high. I could tell she was about in tears as she just pushed through it. This is how she has spent the entire freshman year…..she has pushed through it. She made her club volleyball team through sheer determination, but then after a few weeks decided it was just too much for her and opted for a trainer to help rehab instead. This was heartbreaking, but it was the right decision for her. She was simply too tired each day.
We got through Christmas and we were able to go visit my sister and her family in Hawaii. The kids had such an incredible time. I am thankful we were able to get away for this trip. I did not prepare for how tired I would be and have not stopped since this time last year. In Hawaii, I ws exhausted and rested and slept most of the trip. Lolo had a great time in Hawaii with her best friend, Emmy. Jonathan brought his best friend, Andrew. They had fun with my sister and her husband. I was so thankful the kids could step away from their busy lives and just be kids and go on this amazing trip with each other. My sister and her husband have helped us with our foundation and have been very generous. We are very thankful for their support.
We found out Lolo relapsed on the night of her 14th birthday party. This year as that time came around, our family went to New York City with the kids. Lauren did not want to have any type of party for her birthday this year. I hope she celebrates her 16th in sweet 16 style with a big bash without a care in the world. But, this year we celebrated that she is here with us and is currently still in remission. I still wake up in a panic some nights and have nightmares that the AML has returned. Like many mothers of kids with cancer, I have lost the feeling that I can keep my children safe in this world. I pray to God to help me accept this and bring me peace.
Unlike some people, I find my peace in diligence and determination, however, most of the time this year I have been able to find much peace. I am deeply hurt that Lauren has had to endure so much. I am frustrated that I can’t do more to stop her and other children from suffering. There are many nights that I just can’t hold back the tears and dam bursts.
The last month Lolo was in the hospital I decided I am going to wage war on pediatric AML until I am old and gray and have taken my last breath. I cannot describe the pain of watching your child suffer the way Lolo has had to suffer. After seeing her life hang by a thread so many times during this last treatment, I want to find some way to make it so other children with AML and Lauren herself can look forward to better treatment in the future. During all the days she was in the hospital, I pleaded with people to run bone marrow drives. At first we wanted to increase Lolo’s chances of needing a match, in case she had to go to transplant. We were successful. Lolo currently has multiple 10 out of 10 matches in case she should relapse. However, we also learned of so many other people that do not have matches, especially people of various ethnicities. This became part of the mission that our family wanted to take on. Although Lolo did not need a transplant. The addition of 1,000 more people registered to the bone marrow registry because of her have resulted in other lives being saved. She is an inspiration. We are thankful that people have loved her so much that they have come out to help us with our mission to educate people about bone marrow donation. Therefore, we have worked tirelessly to build Lolo’s Angels, Inc. We have three parts to our mission: we raise money for pediatric AML research, we run blood and bone marrow drives, and we support pediatric awareness events. This year in addition to becoming an official 501c3, thanks to my dear childhood friend & attorney Bill Bianco, we have run bone marrow drives, fundraisers and pediatric cancer awareness campaigns. We have an active adult board (the best people on this planet) and we have an incredible Jr. Board of directors.
That being said, it has been really difficult healing as a family. I have loved teaching the kids at Marian High School. However, this month, I have felt like I have been called in a different direction. I realized I am beyond exhausted. In addition, we have found a few people that are waging the same war that we are. We have connected with an incredible group called Target pediatric AML in Seattle. All of these years as I have studied pediatric AML, I have felt that there has not been a clear direction in research because no one truly understands pediatric AML It is unlike most childhood cancers because it is actually many types of pediatric AML all joined together. It is treated with drugs for adult AML and pediatric AML has differences. But, there aren’t current drugs being developed for children. The drugs for pediatric AML are so toxic that during treatment the kids are hospitalized. You notice Lolo spent months in the hospital. These kids cannot have outpatient treatment, so they are isolated from their families and their friends. In addition, these drugs cause organ failure and a lifelong battle with their health and the risk of secondary cancers.
Even the Leukemia Lymphoma Society has a BEAT AML campaign. But, there is $30 million dollars being spent ONLY on adults, not on pediatric AML. We keep hearing from people that have wanted so much to help us and do something to honor Lolo’s fight, so they have given to the American Cancer Society, the LLS, or even our local favorite, Kicks for a Cure. All of these are such fantastic organizations, however, currently, they aren’t really helping kids like Lolo. It is very frustrating! They are definitely helping others, which is good. But, kids are dying from AML and I can’t seem to get anyone’s attention. It makes me so sad. I am hoping to get a conversation going with Kicks For a Cure and see if they would consider donating to pediatric cancer research, maybe even pediatric AML. I hope in the future we can even bring branches of this research to Omaha with the new research tower being built at Children’s Hospital. But, in the meantime, we need to start by understanding the disease. So, Target pediatric AML is the first organization that I have found that does whole genome testing on pediatric AML. It is building a database to study the disease so that we can build target therapies to treat specific sub-groups of pediatric AML. This is exactly what I wanted to find. Our board meeting is tomorrow night and our group will determine a direction that we will take next year.
Because this is so important, I have decided to not go back to teaching, but to work full-time on Lolo’s Angels, Inc. We have big plans!!! I am sad I won’t teach next year. I have been kind of sick to my stomach all week. I have the best students this year! They are dear young women, for sure. But, I want to focus my efforts on my son, Jonathan. I want to spend a great summer with him and be able to visit him often has he heads off to University of Utah. I want to help Lolo continue her progress and be available to her and to Phil. Phil and I missed our 25th wedding anniversary celebration the first time Lolo had leukemia. God willing…..this year we will be celebrating our 30th. I am very grateful that he and I have remained together fighting side by side. I know this doesn’t seem like a big deal. However, I can tell you that many families of children with cancer are heartbroken and their relationship suffers. I am looking forward to a few evenings….stress free to go get an ice cream cone at Coneflower or to sit outside and have a glass of wine with my husband.
I also want to continue to build Lolo’s Angels, Inc. so that we help in any way we can towards progress in AML. We will be announcing the direction that we will be taking in the next month. I am excited about this. But, I am even more excited that this is where we are heading into Easter 2017 with our family intact. I am proud of Lauren. She made honor roll and she is still a sweet loving girl. I would be a bitter person if I was her. I cannot believe she keeps her heart pure despite her continuous fight for what most people take for granted. I am also incredibly proud of Jonathan. He has grown up to such a funny, kind person. Well, he has ALWAYS been funny. He is a good big brother. I will forever be sad at how much he has had to sacrifice having to be put on the back burner as we have stood by Lauren through both her hospital treatments. He has done without and has sacrificed without complaining. Phil and I are lucky to have each other and we are even more blessed to have Lauren and Jonathan.
Hope your families are healthy and happy! Please keep Lolo in your prayers. Time to open a new chapter in our lives.