Dylan is the happiest kid we know! He LOVES legos and building. He has a twin brother and a younger one that do everything together. He’s become a super swimmer this year and is basically a pretty typical 6 year old boy interest and activity wise.
His resilience to all of this has been incredible to witness. On August 20th, 2014, Dylan was diagnosed with Leukemia. In the following days we were told that he specifically had pre-B cell Acute Lymphoblastic Leukemia(ALL). He spent the following 8 months in intense frontline treatment, which consisted of multiple blood transfusions and many types of chemo given orally, intravenously, and intrathecally. At the end of April 2015, he started the maintenance phase of his treatment. This has consisted of 12 week cycles of chemotherapy, some given daily, weekly, monthly, and once a cycle. Dylan will take his last dose of chemo on the night of October 24, 2017 and we are VERY excited for that day.
There have been many bumps along the road so far, but many more good times than bad. We have had an unbelievable amount of support from family, friends, teachers, and co-workers since that horrible day in August 2014, and will be forever grateful.
Joshua “JoJo” before diagnosis was always very healthy, rarely sick, energetic, typical little boy. Late in the summer of 2016, he began have spontaneous unexplained fevers and not sleeping well at night. This led to sudden pain in his arm that didn’t go away. We took him to the ER for X-rays to rule out a broken arm and we are so grateful that the ER doctor had the intuition to check his blood work. We were referred to a hematologist for abnormal labs- and that same day found out that he had leukemia.
He is the strongest child I have ever known. Nearly every appointment, every “poke”, every procedure – he meets with a positive attitude and optimistic outlook. Our nurses and doctors all tell us this is most unusual for a 3 year old.
He is on a 3 year treatment protocol. We are almost 1 year in-the first few months we’re definitely the hardest on all of us. We spent most of that time in the hospital and away from JoJos 3 siblings and dad. It was hard and still remains tough for our family. However, We are so grateful for all of our medical team and all of those praying for him. His favorite bible verse is Joshua 1:9- Be Strong and courageous. Do not be afraid or dismayed for the Lord your God is with you wherever you go.
My husband and I both prayed for Jackson before I was even pregnant with him. There has always been so much joy surrounding him. He was born by surprise in our own bathtub, where my husband and I caught him all alone. I feel like that set the tone for his life. He defies convention. He is loved by so many people; not a week goes by without someone telling me that they or their children pray for Jackson every day. We feel so blessed to know him, it’s like we’ve been entrusted with something very precious and rare.
Jackson is insatiably curious. It’s as if he knows how much he’s missed out on and he is driven to catch up on all of it. He consistently proves the professionals wrong and laughs in the face of any dire prognosis. He never likes to be still, always finding something to do. He loves to use sign language and communicate with us. His whole face lights up when we respond to him. He loves kitchen utensils almost as much as he loves food — and that’s a lot!
Last fall he was not feeling well and was experiencing daily vomiting, torticollis, developmental delays, loss of gross motor skills, hydrocephalus, and obvious swelling in his head. He was diagnosed with Choroid Plexus Carcinoma. Choroid Plexus tumors form in the brain in the cerebrospinal fluid. There are non cancerous (papilloma) and cancerous (carcinoma).
Jackson has had six rounds of inpatient chemotherapy and one autologous bone marrow transplant. After the BMT and during the last round of chemo, Jackson suffered a blood infection and septic shock that landed him in the ICU. He spent five weeks sedated and on a ventilator. During that time, he also suffered through two respiratory viruses, all while battling low blood counts and lesions on his skin from the chemotherapy.
Six rounds of inpatient chemotherapy at UCLA Mattel Children’s Hospital, one autologous bone marrow transplant. After the BMT during the last round of chemo, Jackson suffered a blood infection and septic shock that landed him in the ICU, where he spent five weeks sedated and on a ventilator. During that time, he also suffered through two respiratory viruses, all while battling low blood counts and lesions on his skin from the chemotherapy. Now that Jackson is out of treatment, he and Todd have bonded all over again. They love each other deeply and Todd is very protective.
He has blown us away with his resilience. When we brought him home from treatment, he couldn’t sit up on his own, he was silent, he ended up needing a feeding tube because he dropped a terrible amount of weight, he was barely rolling over, and he didn’t seem to comprehend anything we said to him. Now he is up on his feet and even trying to climb our stairs. He babbles incessantly, says Mama and Dada, eats like a teenager, uses sign language, and never has an idle moment. It’s miraculous!
Emilia was diagnosed when she was 2 1/2 years old on July 15, 2016. Just two days before, she was complaining that her feet hurt. It rapidly progressed to a very swollen leg and her complete refusal to walk. Our pediatrician had us go to the emergency department where they drew blood and three short hours after arriving at the ER we received her diagnosed, Acute Lymphoblastic Leukemia.
To say our world was turned upside down doesn’t even explain the impact. Emilia took every step in stride, and if you ever need strength or encouragement you can just watch her. She has had no major side affects from treatment and she has loved learning about all things medical. She gets tired easy and is slower than other kids her age, but chasing behind them doesn’t bug her. She does everything she can to keep up.
The biggest obstacle to overcome on this journey has truly been our commitment to maintain a normal life for both our girls. They are both vey aware of cancer and chemo, but to them, it’s like a cold and cough syrup. We are very cautious of germs and try to keep healthy. Our family is committed to not letting cancer take Emilia’s childhood or push Avery, her sister, to the backburner.
Cancer has been a huge speed bump in our lives. We have learned to make changes in our routines and taught us a lot of hand hygiene, but our number 1 rule is still the same… have fun! Trying to navigate doctors appointments and medications has certainly been a lot, and managing the daily anxiety over illness prevention is overwhelming to say the least. I have said many times that cancer is something I would have never asked for in life, but it has brought our family many things. It has built us stronger when we felt like crumbling, it has brought some of the most amazing people into our lives, it has taught us that there are far bigger battles to fight than many we were willing to fight before diagnosis, but most of all it has brought an appreciation to the little things in life.
We are inspired by Emilia and her courage, joy and spirit. Knowing that some days she is injected with multiple chemotherapy drugs, and then later that same day we are admiring the beauty of the quiet trees and playing chase while collecting countless belly giggles makes you appreciate everything you have. It makes you respect and honor the fighters. Cancer is a journey we never wanted to take, but it has given our family strength, admiration, courage and a new perspective on life had we not been given this journey.
Ben started out having headaches. I was told it was eye strain, then migraines, then a sinus infection. After a lot of persistence from us, we got the doctor to do a CT scan which reveled he had a tumor. We were sent to St. Jude for treatment. Ben had a gross total resection of his tumor (which was situated in the center of his brain). He then had 30 proton radiation treatments followed by 5 months of chemo.
September 19th, 2017 marks one year since that first devastating scan. Ben has had to overcome many obstacles but has done so fearlessly. He got the name “fearless Ben” because when he was first diagnosed they asked him to name his tumor. Ben is a very intelligent 10 year old. He said he wanted to name the tumor “fear”. So when it was removed he would be “fearless”.
Jaden is your typical loving corky little boy who loves family. His little brother and cousins love to be around him because he always finds a way to make them smile
He is extremely talented with electronics and loves to figure new things out. Jaden loves doing anything or nothing at all as long as he is surrounded by his family and friends. He is perfectly happy sitting on the couch watching T.V, playing board games or getting out and about riding bikes….it doesn’t matter the activity, its the company he gives.
On Mother’s Day weekend in 2009, our world changed. Jaden was diagnosed with Acute Lymphoblastic Leukemia or ALL. He has been through chemo, blood transfusions and all the procedures required while in treatment.
I had to quit my job in order to tend to his care, this caused a lot of financial stress on our family. His diagnosis has changed our family life. We appreciate the small things and are able to roll with the punches. He has truly taught us that anything is possible and you can get through anything with a smile on your face.
Jaden has celebrated his 5 years as a survivor in July. This is a huge milestone and we could not be more prouder of him! He has shown strength and courage through it all. Even after treatment Jaden had a big battle ahead of him to catch up with everyone his age. He still had some side effects of forgetting things and learning new concepts, even learning to read at his class level. However, with determination and consistency he has proven that there is no challenge he can’t take on. Jaden is now at his reading level, has completed level 9 swimming and currently looking to go for the Bronze medallion. He has taken his love for electronics and applied it to his math subject to help him better understand the one subject he has struggled with the most. Our nick name for Jaden is ” Little Soldier” because he has been an absolute soldier through this entire journey and continues to accomplish the impossible.