We are constantly asked a variety of questions either (a) about Avery herself, (b) about our family, or (c) about Avery’s Leukemia.
We’re going to try to answer many of those questions here and add more when we notice an influx of them.
Frequently asked questions
Avery is named after Mom’s two best friends. Her (only) brother, Wyatt Avery, and her (only) girl cousin, Destinee Renee. They have meant so much to Mom throughout their lives together and both love Avery and Big Sis unconditionally.
Mom wanted to honor them both and hoped Avery would be just as supportive, loving, and dun as they are.
Because she spends so much time in the hospital, she loves walking around the floors and seeing all of her nurse friends.
Otherwise, she loves Music Therapy and watching her favorite videos: Super Simple Songs.
She is a music lover for sure!
Avery has a smart, energetic, full of life Big Sister who is 22 months older than her.
Avery’s (only) Uncle, and namesake, lives with them and maintains the apartment while they’re away.
At Ma and Papa’s house, Avery has three (teenage) aunts who help keep Big Sis entertained and love on Avery every chance they get.
Together, the ten of us are incredibly close and lean on each other through the good and bad times.
Avery wears almost exclusively bamboo clothing because it’s lightweight (great for regulating body temps with her fluctuating blood counts) and softer on her chemo-sensitive skin.
Our favorite brands include:
“Team Avery” primarily consists of two people when it comes to social media: Mom and Ma.
Mom reads all the comments, replies when she has a moment, and helps monitor the comments and messages.
Ma (Avery’s grandma/Mom’s mom) handles all of the posts: photo editing, composing, and other content creation; including this blog.
Mom has a degree in Marketing and Ma has been an online digital content creator for over 11 years, so they work together to share Avery’s story.
Unfortunately, we were immersed in the world of cancer well before Avery was born.
Avery’s great grandma fought Lymphoma for over 7 years before passing away in August 2017.
We know how hard it can be navigating this journey alone. We know how much of a learning curve comes with a cancer diagnosis.
We also know how important it is to continue to spread awareness about childhood cancer.
This is why we chose to share so freely and publicly.
We want Avery’s story to make an impact and encourage change.
Mostly, we share to educate and inform.
Tuesday, 12/15/20: Avery started eating a half ounce less than usual. (She has always loved to eat).
Wednesday, 12/16/20: Avery still wasn’t eating all of her bottles and Mom discovered another swollen lymph node on her neck (same side as the first one) that morning. She called the pediatrician and was able to get an afternoon appointment.
The pediatrician didn’t find anything concerning at first, but then decided to run some last-minute bloodwork because she thought Avery looked pale. Her Hgb came back at 5 (normal is 11).
They were immediately sent to the ER where more tests were run and the initial diagnosis came in.
She was then transported to Children’s Dallas ICU for further testing and we received the Acute Lymphoblastic Leukemia diagnosis soon after.
CAR-T Therapy is relatively new in the world of cancer. Although it’s been studied for over 10 years with ALL patients, it only gained FDA approval in 2017.
CAR-T is a gentle treatment option that has been found to cure a good number of patients. It’s a great option for first-time relapse patients, as well as those who relapse after Bone Marrow Transplant.
CAR-T differs from Bone Marrow (or Stem Cell) Transplant because you use your own cells rather than a donor’s.
There are a few factors to look at in order to qualify for CAR-T; but most important is that your cancer cells must all contain the same protein (CD-19), so they can be targeted with the therapy.
COVID has really put a hamper on any “boots on the ground” help for us. Avery’s compromised immune system doesn’t allow us to see many people.
Therefore, beyond any kind of physical, emotional or spiritual needs, our most tangible needs are finances and food.
Also, THANK YOU for offering. We truly appreciate all of the support!
We’ve been able to migrate everything over to the blog to keep everything in one place, so you can find all of our “Avery merch” here!
Unfortunately, they can’t put a timeline on any part of it. It all depends on her body, the cancer, and how well everything we do works. If she can stay in remission for 5+ years, she would be considered “cured.”
Still have questions?
If you cannot find an answer to your question in our FAQ, you can always reach out to us on Instagram (it’s the quickest, easiest way to reach us) and we will do our best to answer.