Dear Love Bus Supporters,
My name is Angela, and my husband Alex and I are parents to two amazing girls: Alexa, who is 18 years old, and Aida, who is 15 years old. We have two dogs: a beagle named Molly, and Alexa’s service dog, Boo, who comes with us everywhere we go. Alex and I just celebrated our 20th anniversary this year, and we see it as a major accomplishment - many marriages end in divorce for parents in our position. You see, we have almost never been parents to a child who is not very sick, and that takes a toll on the entire family.
On Alexa’s first birthday, when we should have been excitedly watching her make a mess with a smash cake, we were instead bearing witness to her first seizure. We rushed to the hospital where they ran tests and did a CT Scan, and found nothing; we were told to go home and make an appointment with our pediatrician. Alexa was nearly two by the time our pediatrician ordered a follow-up MRI, “just to be safe.” I can remember that day vividly; it was the worst day of our lives, quickly going from a “routine” MRI, to being admitted for a hospital stay after they found an abnormal mass in our toddler’s brain… and then learning the life-changing news that it was the type that couldn’t be removed. And thus began the lifelong medical journey for our firstborn, after just one year of a “normal” childhood.
As she grew, we worked with a neurosurgeon to monitor her epilepsy and the tumor growth through regular MRIs. But between the ages of three through five years old, her seizures became so relentless that she had to wear a helmet, and I would follow her around the house with my arms stretched out ready to catch her. It was at this time that her medical team discovered that an increase in frequency of her seizures matched an increase in tumor size– and so she began her first of three rounds of chemotherapy to slow tumor growth and keep the seizures at bay. After a little over a year of chemo, with the seizures nearly non-existent, Alexa came down with a bad case of pneumonia that left her with interstitial lung disease– she had to stop chemotherapy, and with it went the slice of stability it offered her.
Alexa has had four brain surgeries in her life, each of which has left her with temporary partial paralysis– and each time, she worked tirelessly to gain back the use of her left side. And when the interstitial lung disease left her with a dependency on an oxygen backpack, which she hated, she worked with her doctors to come up with a regimen of exercise and medicine to help her get rid of it. She is so strong and so determined– but there are some effects from her brain cancer that can’t be willed away.
Alexa’s treatment and consistent seizures have left her with cognitive delays; at 18 years old, her emotional and social development level is similar to that of a seven year old. Acceptance of this has been one of the hardest things for our family, especially her younger sister; as Aida has come into being a teenager herself, she gets frustrated at the fact that she's surpassing Alexa in many ways. She takes on a lot of the worry and responsibility of caring for her sister, often asking heavy questions like, “How will I care for Alexa if something happens to you or dad?” or “Am I going to have enough money to get my sister into housing if she needs it?” These are the worries of a sibling to a child with cancer, who has become old enough to understand the implications and effects of the disease. No one should have to think about these things, especially not a 15 year old.
Aida has always found ways to keep herself busy; it offers her an outlet, so she can feel she has the emotional capacity to handle all that goes on at home. Currently, she is involved with the youth group at our church and is a successful competitive softball player. The club softball team that she plays on is year-round and often has tournaments on the weekends, giving her a consistent escape from the chaos of our house, and a well-deserved break from her worries. We cannot afford to keep her on the team on our own; her participation is only possible thanks to Lucy’s Love Bus, which in turn is only possible thanks to YOU!
As for Alexa, she is a huge goofball with a heart of gold. She is happiest in the ocean riding the waves with Boo, and when she is riding horses. Both give her confidence and a freedom in her body that she doesn’t typically have with her feet on the ground. Alexa regularly attends her own individual therapeutic riding lessons at Ironstone Farm thanks to funding from Lucy’s Love Bus, and she loves joining the Group Programs, riding horses with the friends she has made, and even caught some waves during the “Intro to Surfing program” this summer – all while Boo watches on, of course.
Alexa will always need care, and as she just turned 18, we have been taking the steps to ensure that she has what she needs as she transitions into adulthood: applying for section 8 housing, social security, and guardianship. Alexa’s brain tumor will need to be monitored for life, and her seizures will always afflict her– but in the meantime, we are filling her days with joy, and Aida and Alexa are finding their way as siblings. Whether they’re streaming a TV series together, going to get their nails done, or giving out candy during trunk-or-treat, they find little moments when they can bond and enjoy being together.
Unlike many organizations whose emphasis is on cancer treatment, Lucy's Love Bus recognizes the importance of finding joy, finding the things that make you feel better, and finding things to look forward to in this lifetime– while there's no cure. This unique mindset and approach sets Lucy's Love Bus apart, making it an invaluable source of support for families like mine. Alexa has gone through a lot in her 18 years– and as her family, so have we. But we are learning how to find acceptance, joy, and positivity through it all– and we couldn’t do it without the support and warm embrace from the Lucy’s Love Bus community. Thank you for being there for us and for families like ours– we are eternally grateful!
With love and thanks,
Alexa and Aida’s mom