Lolo had her Oncology appointment yesterday. Right away, so you don’t have to wait….Lolo is still in remission!! She had her blood drawn the night before. This time she had to have a bunch of Immunology tests, so she had 6 tubes of blood drawn. She handled it like a champ. We specifically asked for Jim, the phlebotomist when we walked in the door, so she had confidence it would go well. Now Children’s has a Connect account where you can check results. I always think I am cool as a cucumber, but what a big fat lie that is. I was a hot mess. I casually checked for her CBC results at night and for some reason they weren’t in. Of course, that lead to not sleeping and tension. It is in my cells and as much as a I reason she is going to be fine, my body has stored the truth. Things just haven’t been fine and as much as I try to force out positivity, until she has some years under her belt without scares, surgeries, and procedures, my body stores our history. We are in Lolo protective mode….and this mama will fight to the death for Miss Lo. She is my person.
Lauren’s CBC wasn’t in because it hadn’t been released. Her counts looked fabulous. In fact, they are the best ones I have seen in 6 1/2 years of fighting this beast that is AML. They looked solid….right solid in the middle, like every normal kid out there. I finally was able to pull them up at work before Lolo’s appointment. 6 1/2 years later, it made me cry to see her counts so solid. I don’t know why I am so nervous lately. Maybe it is because this time last time is about when she relapsed before. Lately, I have been feeling some bliss also, which is somewhat scary. Despite having to have surgery to remove a tooth and clean up a bad infection in her jaw and sinuses, Lolo was able to go to Prom! Lolo is getting close to getting caught up in school from having to miss 5 days of school…ugh! She is all set to go to Seattle to do an internship at the Fred Hutchison Cancer Center this summer in Dr. Soheil Meshinchi’s lab! She is really excited about that. I will hang in an Airbnb and do a little online scrapbooking and sit in some cool coffee shops and read while she works. We are also heading out to Colorado again to visit Jonathan. He is heading back to work on the Arkansas River in Buena Vista, Colorado. If you want an adventure, ask for Jonathan with Kodi Rafting. He is a great white water rafting guide! He will return in the fall to attend Creighton’s EMT program.
We have some fun things to look forward to. This is sometimes where my anxiety jumps in. When things get good and seem normal, I begin to worry that the other shoe is going to drop. Me and every other cancer mom out there knows this feeling. It is common. I am not overly anxious nor am I pessimistic. As I connect with other cancer moms, this is the thread that is common in our lives. That and a few other things.
But, this time Lolo’s appointment went well. Her infection is clearing up. She is stressed, but starting to see the light at the end of the tunnel of getting caught up in her classes. She only has a week and a half left of her Jr. year. Her check up went well. The picture you see if of Lolo waiting for her appointment while looking out at the construction going on for the new addition to Children’s. Wow! Pretty amazing! We took the picture so that when she celebrates being cancer free on July 2, 2021, we will remember when that center was just being built. Lolo will be in remission for 3 years on July 2nd of this year. Please keep her in your prayers that she stays in remission and will be cancer free someday!
Lolo had an extensive conversation with Dr. Acquazzino about her overall health and ways to keep her from getting sick. Lolo has only missed 18 days this year! I know that seems like a lot, but it the least amount of days that she has missed since she got diagnosed 6 1/2 years ago. The most she missed was in 6th grade. She missed about 98 days of school. In 8th grade, she missed about 60 days of school. Last year she was in the high 20s. We are getting there. Hopefully, next year will be her year and she will have less illnesses and side effects of all her cancer treatment. This year she had to have 2 surgeries because of her cancer treatment: painful scar tissue in her leg & tooth pulled and jaw debridement. However, on a positive note, she is getting to the point where she is taking less medication. It is hard sometimes when things have been rough for so long to see progress. Maybe her Senior year could end up being the best year yet. Wouldn’t that be wonderful? It is a plan of ours as an organization to help with awareness and advocacy for pediatric cancer survivors in the area of returning to school. This will be an aspect of Children’s Hospital Survivorship Clinic.
Lolo’s next appointment will be as part of the new Children’s Hospital Survivorship Clinic! This is a dream for so many of us in Nebraska with kids with cancer. Lolo traveled to Seattle last year to be part of their Survivorship Clinic. We also brought information back to Children’s Hospital to let them know what it was like. This is a focus of ours, as a family, and as a non-profit for Lolo’s Angels. Yesterday, in addition to Lolo’s appointment, I met in the morning with the Children’s Hospital Foundation to find out how we might be able to help bring additional services and support to their Survivorship Clinic. Our board meeting this week will discuss how Lolo’s Angels will be involved with this. Our goal as an organization has been to fund research to help have better therapies that help kids not only survive their cancer, but thrive in their life. We hope to increase awareness and ways to help children thrive after cancer. Our goal with Lolo is exactly that….she deserves to thrive, not just survive. But, we also need to celebrate that she is a Survivor…in so many ways.
Many good things to come. As a mom, I am also seeing some ways to help support other families. The first step is figuring it out myself and help by sharing information that has been helpful to me. As far as Lolo has come, I have taken some steps backwards in my own health. While she is in treatment I guarded my health well. I took care of myself so that I could take care of her. Over the last 2 years, I have crashed. I haven’t been caring for myself physically or emotionally. I have been out of balance. It is hard to see this when you are so close to it. It is like after finals when you give it your all and then you crash. I crashed, but didn’t recognize it. I continued to fight as I had for Lauren for other kids with cancer. But, I realize now, I don’t have that kind of energy. At least, the pace cannot be sustained. I am working with a good friend of mine, Bobbi McPherson who is an executive coach. I am finding some plans for balance in my life. For this first time in a long time, it involves dedicating some time and energy into caring for myself. My first focus will continue to be striving to have healthy nutritious meals for us and to get my booty in the gym again. Wow am I out of shape. So, I will consider that progress. I am finally back to work..only part-time now, but, hopefully by fall of 2020, I can return to my career. None of these things happen by mistake. They have to be intentional. For now, our intention is to keep Lolo in remission and focus all our efforts on the overall health of our entire family.
Today, we feel blessed, lucky, and happy….We will take that.