First and foremost, we want Aspen to be known for her immense confidence and strength not to mention her class and flare for style. Aspen has a signature look and it’s her pink sunglasses, Minnie shoes from Auntie and skinny jeans. She is the Audrey Hepburn meets Lucille Ball of the 2020’s. All this and the strength of a tiger mixed in, makes up who Aspen is.
Aspen adores her older brother Elliott (4) and now knows how to load a nerf gun because of him. She follows him around like a shadow and the two are inseparable. Elliott is an amazing brother, always making sure Aspen is “okay” and including her when he plays. Once she started responding to his walk talkie calls and ammo refills, he saw more value in her existence, a partner in crime.
We started giving updates through GoFundMe, you can read about the past year of our lives here. We have now decided to dedicate lengthy updates to this website, as writing has become a stress-relief for both Ashley and Troy. Along with needing a way to keep everyone updated, informed and rally together!
FREQUENTLY ASKED QUESTIONS
Below you will find the most Frequently Asked Questions we receive about Aspen’s cancer and some questions people want to ask but can’t say out loud.
What does AML stand for and what do the letters after it mean?
AML stands for Acute Myeloid Leukemia, A type of cancer of the blood and bone marrow with excess immature white blood cells. Basically Aspen’s immune system is under attack and her cells aren’t working properly, essentially attacking it itself. RAM is the phenotype and GLIS2 is the mutation, both characterizing this specific type of AML and the category of risk factor as High Risk with a poor outcome. If it were not for genomic testing we would not be able to characterize Aspen’s AML and she would be receiving a one size fits all approach to her cancer. Her specific phenotype was not discovered until 2017.
When and How did you know Aspen had Cancer?
Aspen was diagnosed on January 15th, 2021 just a week after her very first birthday. Aspen had a consistent temperature of over 101 for 7 days straight, which was controlled with Motrin and Tylenol. Her doctor eventually told us it was time to go to the ER to have blood work done. Her blood revealed leukemia “blasts” in her blood, meaning the blood under a microscope revealed 80% disease. She was in a leukemic state but was stable enough over the next few days for us to send her blood work out for genomic testing and to begin the appropriate chemo regimen which resulted in us joining a study (AAML 1831).
A lot of people have said to us: “Pediatric Cancer is survivable, treatments have come really far,” “I know someone who survived leukemia…”
This really is not helpful, in any way shape or form, we understand the good intention but hearing this just sets a fury inside of us because it is so far from the truth for us.
When Aspen was first diagnosed the doctor and nurse in the ER tried to calm Ashley down by saying this, along with mentioning how an actress from SNL survived pediatric cancer. This was not helpful, and frankly really confusing when you sit down at a table with doctors and they tell you that your child’s diagnosis is considered a poor outcome, and there is no real cure just hope. Why do people say this? yes, research has advanced, but not far enough to save all the children with every type of cancer.
To see what this disease does to families and how important targeted therapy is needed please watch the video below:
What is clinic? and why do you need to stay overnight in the hospital for some treatment?
Clinic is where we go for outpatient treatment, infusions and check-ups. Aspen’s clinic is the Tommorw Fund Clinic for her chemotherapy and Jimmy Fund Clinic through Dana Farber for her transplant needs. Clinic is our second home, everyone knows Aspen and she has been nicknamed the mayor of clinic. I wish we didn’t have to go to clinic but the staff and child life specialists make our days tolerable. The staff bring toys to the room for Aspen to play with and make sure parents are comfortable.
Aspen has to stay in the hospital for treatment if the treatment makes her neutropenic, meaning her immune system is extremely compromised and she is at high risk for infection. Staying in the hospital keeps her safe and if she is home and has a fever we have to rush in.
You all must be broke from medical bills, how are you surviving?
Unfortunately we get this question a lot. You would think the medical bills are piling up but it’s more of the loss of income and lifestyle changes you have to make that cost the most. Ashley has now become the main caregiver of Aspen and Troy has kept his job, while working from home. There is no state funded caregiver compensation for parents, of children who do not qualify for social security. Our weeks consist of daily clinic visits, driving to Providence and Boston along with overnight hospital stays. We anticipate living in the hospital again in our near future, which will put a toll mentally, physically and financially harder on us.
How is Elliott doing?
Elliott is doing well, considering he has been handed lots of challenges. He has started school (pre-k) and loves his school. He is extremely attentive to Aspen, even telling an adult if he thinks she feels warm. We have made sure he is having as much of a “normal” 5 year old life he can have. He understands that his sister has cancer and that she receives medicine to try and get her better. Family has been a tremendous help and bringing him to fun activities and just giving him extra love when he needs it.
How can Aspen have cancer, yet I see pictures of her happy online?
Aspen has an aggressive form of cancer, when she was first diagnosed she was in a leukemic state meaning her leukemia had taken over 80% of her marrow. When Aspen relapsed we caught it during her 9 month routine bone marrow biopsy after transplant. Catching it early allowed up two weeks without treatment and time to create a plan. Once Aspen began treatment her body starts responding to the treatment such as her immune system being depleted, vomiting, neuropathy and diarrhea just to mention a few. Below is the form we were given to sign off on for just one of Aspen’s chemotherapy medications. All of these drugs have side effects that could potentially disable her, secondary cancers or lead to death. This is another reason why targeted therapies that are not as harsh on children’s bodies need to be created, and why we are pushing for these options through Project Stella.
What is a Bone Marrow Transplant and why is it seen as a potential cure?
A bone marrow transplant is when healthy cells are taken from a donor either through their bone marrow, peripheral blood or umbilical cord blood and are placed in the sick patient. The actual transplant is a blood transfusion, a lot of people think it is a surgery where an organ is placed in the patient, but it is new blood to essentially give you a new immune system. Doctor’s describe this as bringing the patient to the brink of death and back, because their old cells are stripped away with powerful chemo beforehand and the new cells transfused are blasted through the body as foreign and the body will try to combat them. This results in side effects that effect called mucusitis, sores that go from the inside of the mouth down to the anus. Unfortunately Aspen suffered badly from this along with having Venno-Occlusive Disease, when the small blood vessels leading to the liver becomes blocked. Aspen almost died from this side effect, having to spend a week in the ICU. This is why new therapies are needed because the hope for a cure, alone, will kill the child.
Still have questions? Contact Us.
Don’t have anymore questions and feel like you need to do something now, so other children and families don’t have to endure this this hell…