Adelia was diagnosed on 2/27/2023 with diffuse midline glioma. She has been through almost 63 rounds of radiation, 4 brain surgeries, and countless other procedures. She was doing very well for the first 8 months, and then the cancer spread to her brain stem and she lost function in her left arm/hand, and has trouble with balance and walking. Last month, we found out that the cancer spread to her spine, and she is currently undergoing radiation. We are hoping to get her to the CAR-T trial in Seattle in mid-April, the soonest she can go. Throughout it all, Adelia has remained fearless, optimistic, and in good spirits. She never complains and takes everything in stride. She is an avid reader, devouring many books a week, loves school, crafting, painting, cooking, and her little sister Esme.
We thought Adelia had the stomach flu, and she had been in and out of the ER with treatments of Zofran and IV fluids. Her symptoms presented extremely rapidly, over a few days. We took her to a different ER finally did an MRI and found the golf ball-sized tumor in her brain. We were ambulanced up to Boston Children’s for emergency surgery. Looking back, there were subtle changes that we should have picked up on but didn’t know any better. Two weeks prior, she had her annual visit with her PCP and she said her vision was blurry on the vision screening, but could still name all of the letters accurately. She was probably having double vision then but didn’t know how to articulate it. The day she was diagnosed will always mark a before and after in our lives.
Kinley is a sweetheart. Her dad makes her laugh the most with all of the funny faces and noises he makes. She loves all animals so much that her second birthday was party animal-themed. During her treatments, she found her love for Disney movies and we are hoping to take a trip once she is officially done with all of her treatments.
She was diagnosed with Neuroblastoma in April 2023. Before her diagnosis, after she turned one, she had a black eye that popped up randomly. Two weeks later, it was still there. It would fade slightly and come back worse.
She has had a biopsy, two port placements, removal of one ovary, removal of one adrenal gland, apheresis catheter placement, and removal.
This has been the hardest thing that we have been through. It has made us stronger as a family and stronger in our faith. It has been so hard seeing our daughter go through the pain and suffering that she has been through in the past year. It has also been hard to see all of the other kids and families that are going through childhood cancer as well. We are so thankful for all of the help from friends and family that we have received. I want to pay it forward and return their kindness in any way that I can.
Mason is such a funny, goofy, happy kid. He’s such a strong, determined little boy. He is kind and he is so smart he knows what he wants and he’s not afraid to say it. He has such a strong love for learning and loves going to school. He loves reading and puzzles and games. He loves playing baseball and soccer with his friends. His special interests are numbers, letters, spelling, and building things. He loves his chickens and being with his little brother.
He was battling Covid and at the same time, he was having joint pains and on-and-off fevers weeks after he got over Covid. Then he became extremely lethargic, pale, and high heart rate. He was diagnosed with ALL on February 2nd, 2023.
He is currently being treated with chemotherapy and his entire treatment will last until April 2024. He was on high doses of vincristine, and methotrexate. He currently takes daily chemo and weekly methotrexate as well as monthly spinal taps with spinal chemotherapy. We struggle currently just with managing daily life due to side effects such as nausea vomiting lack of sleep mood swings.
Mason’s diagnosis has changed our family dynamic. I had to quit my job to become his caretaker full time because he could not be in the general public and now I only work part-time so that I can be available for him at any point of the day in case he gets sick at school or has an appointment or any other unexpected thing. We have to pick and choose things that we can and can’t do with our kids due to finances.
Zaira is a bright beautiful two-year-old with so much personality and sass. She adores her big bro and plays silly with him. She loves all things princess and ballerina. And even through these rough times, she surprises everybody with her attitude.
Zaira was diagnosed on January 21st of 2024. She was doing completely fine and nothing could suggest she had a mass growing in her chest, we found out by complete accident while she was getting checked for a knee accident. We are so very thankful for the doctors who spotted something wrong and made us go back!
She has been through all possible inherent exams and last month got a port-a-cath with her first set of chemo. We are new to the area and live on Camp Pendleton (Marine Corps base). We are slowly rebuilding our village here so the biggest struggle has been driving back and forth to Rady’s in SD and family arrangements for our older son.
The shock has been hard to digest for all of us but we’re trying to face one challenge at a time and be present for our kids. Our relatives are spread literally all over the world and they’re trying to support us as much as they can from a distance.
Our family is a proud Navy family, we’ve been traveling all over in the last few years on military orders and we received this shocking news of our little girl only after a month of being in California. The past few months have been the most challenging for everybody adjusting to a new environment first and then dealing with cancer. We’re so grateful for Rady’s Children’s Hospital and all the staff really. They’ve been a blessing to us.
Emilia was diagnosed on August 23, 2023 with B Cell ALL. Before her diagnosis, she had petiki spots on her chest and body stared appearing. She was fatigued and complained of body aches all the time and didn’t wanna eat and just sleep all day.
She’s been going through chemo sessions through her port and bone marrow/spinal Tap tests. We are in consolidation stage in induction.
She truly is a fighter and has a heart of gold. Her spirit is so high right now and she really does live life to the fullest every day as we all should!
In August of 2023, A’myra she started to complain about pain in her shoulder. We then found a really big lump on her right upper chest.
She is going through chemo, and is almost done with radiation. She will get surgery in the next 2 months. A’myra has 3 siblings and two bonus siblings through marriage. They miss playing with her and miss her at home alot if she happens to get admitted. I temporarily quit my job to be by her side full time. My husband had to go back over the road to make more money since I’m no longer working. My kids miss me alot when I’m not able to be home with them.
We have to limit family and friends from coming over. If we do go anywhere, it’s only for a little bit, or we just won’t go for her safety. We’re very emotional about being apart when A’myra gets admitted or if I can’t be there for the kids as much as we were used too.
She’s very strong! Since being diagnosed our saying is, “We’re being brave”. And it always gets her through each treatment.
