This week was Lauren’s oncology appointment with Dr. Coulter. It was her “one year from last chemo” appointment. It was strange, I actually slept through the night before the appointment. Usually, I toss and turn and feel sick to my stomach the whole week prior. Her diagnosis is especially precarious. She had no leukemia in her bone marrow, but she relapsed in her skin. She had one site where she relapsed, but it is considered a full relapse. This poor child had to repeat the grueling AML chemo all over again. It has taken its toll. This recovery has taken her much longer. She has had stomach issues and nerve headaches, strange pains in her joints and feet, and a lot of pain in her leg where she had radiation. She is just tired. One year out and she still has days that she sleeps the whole day through too tired to do much. She also has days she is bouncing off the walls, sassy, and making her nutty videos to her favorite songs. She is getting there, just a bit slower this time. But, she is getting there, my sweet, beautiful young woman.
The appointment went well. Phil took the day off work. We had a lot to discuss from our trip out to Seattle and our consult with Dr. Soheil Meshinchi and Dr. Todd Cooper. We had special tests run on Lauren including having her whole genome sequenced. This information gives us more to go on to understand her specific leukemia. This information is vital for new patients diagnosed with AML. This is what we are trying to bring to Nebraska for all kids with AML. Our Dr. Coulter is working with Dr. Soheil to try to make that happen. Lolo’s Angels, Inc. raised $16,000 and Sammy’s Superheroes brought that total to $30,000 to make a grant to the Children’s Oncology Group to support the Target pediatric AML initiative. We have made some incredible friends and partners to start fighting with an army against this brutal disease.
Last year when we found out Lolo’s leukemia had returned in the skin, there wasn’t a lot of data on what to do. I know I drive Dr. Coulter bonkers, but he secretly loves me too. I wear him out sometimes with all my questions. I just can’t help it. Like most parents those horrible statistics just can’t sit permanently in my brain. I can’t bear it. Even if I can change something by a fraction, I keep hunting. Dr. Coulter is the same. I don’t think a lot of people know that we didn’t choose standard treatment for Lolo. Every doctor that Dr. Coulter talked to said, “take her to transplant.” Yes, in some cases, transplant cures AML. But, it also has a 40% mortality. Meaning there is a 40% chance Lolo would die from the transplant. If we did nothing, everything we read said that the leukemia would spread throughout her body. Statistics said that the usual lifespan of an AML patient with leukemia cutis (leukemia that has metastasized to the skin) was 9-14 months from diagnosis. If we did nothing, Lolo would have passed away in about a year. I cannot tell you how numbing that felt to read that. Even with transplant, most people pass away from leukemia cutis, eventually. There wasn’t a lot of data of success with this situation. There definitely was no cure. Even when experts across the country told Dr. Coulter he should have her go to transplant, he and I would talk and we both felt this was different. Lolo was in bone marrow remission, meaning no leukemia in her bone marrow after her first bought of chemo way back in 2013. We had found her one blip of leukemia in her leg very early and she did not have any in her bone marrow. The decision was that Phil and I needed to go home and talk to Lauren and make the decision. She could either go to transplant or Dr. Coulter was going to tweak the chemo that she received the first time and give her 4 cycles of a mixed bag of something awful that was designed for refractory or relapsed leukemia. As you know she went back to Children’s and had 4 full cycles of this cocktail and spent from April through July in the hospital extremely ill. She had the leukemia in her leg surgically removed. She followed all of that with radiation treatments to her leg.
One year later, Lolo is in remission from AML. Her labs looked great on Wednesday! It isn’t likely to return to her bone marrow. Her skin will be monitored and we start counting over towards the 5 year mark of being leukemia free. God Help US! This year on 12/12/17, she would have hit her 5 year mark. But, now we will start all over. I am still going to celebrate this December. Oh God, what our family has been through for the last 4 ½ years. So much has been taken from Lauren in those years.
This year I haven’t written much about what I have felt about all of this. I was too angry. I do think when your child is diagnosed with cancer you go through the 5 steps of grief. There is denial, for sure….oh man, there is definitely shock, total shock. This year I have been just plain angry. We were all hopeful after the first time. So hopeful. When she relapsed it was a punch in the gut. The hope diminished, the fear emerged. Last summer was terrifying. I think I held my breath most of the time. When she left the hospital, I was exhausted and tearful. After resting, I was just plain mad. I couldn’t take it anymore. I couldn’t believe all she suffered, how much of her life she had missed, how she had to start fighting all over again to regain her strength, how hard school was for her, having to quit so many things she loved, and accepting her body and her bald head. As a mother, I cried and raged. I tried so hard to support her in all she did, but she needed space. She needed to cry and rage on her own, in her own way.
Last September, she put on a brave face and took her school picture, pale and bald. She grimaced as she went through the line. I was watching because I was the teacher in the study hall. I didn’t go comfort her. She would have been mad. At one point, she went to the end of the line. She wasn’t ready. But, then I saw her change. She looked determined and I knew she would be ok. From a distance, I saw that Lolo courage emerge and she went and sat down for the photographer and took her school picture. She earned it. She fought to get out of the hospital to start that first day of high school. It didn’t matter that she wasn’t tan with long hair like most of her peers. She spent the whole year hanging on with courage. But, we can’t be that naïve to think she is so different in this world, that this is not a bitter pill for a teenage girl to swallow. Sure, there is a lot worse, but I am also so tired of people pointing that out and having such high expectations for Lolo….that “she should be so happy,” she “adjusts so well,” etc. That is part of my anger. Somehow people dismiss what Lolo has had to endure because they are so used to watching life kick her in the teeth. I see people struggle to make sense of it. They love her. I know that. Besides, who knows really what to say to her. I am sure they all see their own daughters in her. They give a little whisper in their head of “Thank God, my child hasn’t had this happen to them.” I do that. I mourn the loss of so many kids to cancer these days. I cry every time I see another announcement. This last week, little Sawyer Grace lost her battle and I have been a wreck ever since hearing the news. Sawyer had AML and fought for 3 ½ years. We watched her from a distance as part of our extended cancer family. She had similar characteristics to Lolo and the sweetest little smile. But, I was also so relieved that Lolo is still here.
The grief and anger have been healed by starting our organization. I have to hurry and write this because we are running a bone marrow drive today. I will be at Baxter Arena from 12-6 running a bone marrow drive with our incredible Lolo’s Angels crew. Then I need to get publicity going for our September 30th event. Our Backyard Bash is going to be a ton of fun. I am excited that Dr. Soheil Meshinchi is going to be our guest speaker. He is the leading pediatric AML researcher at Fred Hutchison Cancer Center. He is our new friend….Lolo loves him as she does her beloved Dr. Coulter. Lolo always refers to Dr. Coulter as her best friend. We have also hired Zach Sieff of ClearFrame Media to do a video production for our organization. Our family is paying for this video and shooting starts in a couple of weeks. A few months ago a friend said to me, “Why are you doing all of this?” She went on to say how I should get as far away from cancer as I can and just relax. She couldn’t figure out why I am taking all of this on.
Here is the answer: That question would be similar to asking a soldier in the middle of the battle why he doesn’t just relax and avoid the war. There are still children dying at an alarming rate of this disease. It isn’t getting the funding it needs. Other organizations say they are raising money for AML research, however, they aren’t. They aren’t researching pediatric AML and funding it. They are raising money for adult AML and it is not the same disease. There are promises that in the next 10 years or so, they will be, but in the meantime, I read posts about AML kids dying regularly. I have found a way along with TpAML to unite other families across the nation that are connected to pediatric AML. We know that doing genomic sequencing will help define the disease and then there is other research related to these target therapies that can be funded. I am not waiting for other people to fund this. We can do it. If we wait for 10 years, we will have thousands of kids that have died by then. These kids deserve better. The treatment alone is brutal and they need better options. I am mad, in fact I am crazy mad….and deeply hurt. By helping, I ease this burden. I hope I also enlist others to join me and help these kids. Today, I am looking forward to our bone marrow drive. Somewhere out there, someone is going to be the match that will save another person’s life. This is a wonderful way to spend the day.