Everly was diagnosed with Leukemia on August 16th,2020. Before her diagnosis, she was complaining of leg pain and then would be fine. She also had fevers and cold symptoms off and on for 3 months. On the day of her diagnosis, her fever wouldn’t go away with meds and she slept all day. When I picked her up and decided to take her to the ER her lymph nodes were the size of small grapes.
She has had to have 1 port placement and 2 port replacement surgeries, multiple lumbar punctures, bone marrow aspirations, chemotherapy, physical therapy, and behavioral therapy.
I had to stop working and bills have been tight. They sometimes get skipped to make sure we have gas to get to appointments an hour both ways.
When Madyson was 7 months old, she started having random fevers and petechiae one weekend. We took her to multiple hospitals but all the tests they did came back negative. Her blood work was all over the place so her pediatrician sent her to Texas Children’s Hospital. They had to do a bone marrow sample to find the cancer.
Madyson went thru 5 rounds of chemotherapy. Multiple lumbar punctures and bone marrow samples. Multiple Echos and EKG, her heart became weakened in the first round of chemo. Through it all, she still remains a happy little girl.
This has definitely changed all of our lives because Madyson is the first baby in our family that has had childhood cancer. We now have a new understanding and appreciation for others who have gone through the same journey. It hits different when it’s your own child. Her four-year-old sister never fully understood why her baby sister was sick, just that she knew she was. It affected her more than we thought. In a way, we see that she was robbed of her baby sister for 6 months. I was scared they would resent each other because we put a lot of our focus on Madyson to get her better.
Madyson is thriving at 16 months old today. She is a little behind on doing some things that babies tend to do at certain ages but she is catching up quickly. I have never known a more strong-willed child who has beaten cancer the way she has. She won the hearts of everyone she met with her sweet happy self.
In the summer of 2019, we had just come back from a family trip to celebrate Ezrah’s 2nd birthday and she was not herself during the trip. She was tired, slept a lot, and didn’t want to walk much. She had a few bruises on her legs as well. The few days before going to the ER, she had about a dozen bruises pop up. When we went in and showed them her legs, they told us to wait and we would be called back. It was 9:30 pm and we were called back right away even though there were about 15 people ahead of us. I knew right away it wasn’t going to be good. There were 3 doctors in there looking her over. They said she needs to be admitted right away and that they were sure she has Leukemia.
Ezrah has had a dozen lumbar punctures and she didn’t walk for 2 months due to leg neuropathy. She had an NG tube that we would change or replace as needed. She laid on the couch for 1 year since she didn’t feel well. In Feb 2020, we thought we were going to lose her- we were in the hospital for 15 days while they tried to figure out why she had a consistently high fever- and told us that it was probably a Muc infection and the prognosis was less than 5%. They took cultures and it never grew and finally, the fever just broke and we were able to go home.
We had to re-finance our home 2x during this journey. My parents sold their home in San Diego and moved around the corner from us exactly one week after Ezrah’s diagnosis so they could support us.
Cancer has completely changed us- we are not the same people we were before her diagnosis. It broke us down and yet built us back up. We lost friends and gained friends. We spend a lot more time together and have more mindful events together as a family. We have let go of the little things that don’t matter 5 years from now. Ezrah has taught us so much during this time with her own words – “Be happy mom!”, “I’m strong and I can do this!”, and “Cancer is going away mom, I can feel it.”
In the fall of 2020, Deklyn was having leg pain and fainting spells. This led to visiting numerous specialists who brushed off his symptoms. I finally called an integrative doctor I met after I was hit as a pedestrian by a commercial vehicle. The receptionist squeezed us in for an appointment the next week. Later that afternoon, she called back and was like something is saying you need to be seen today and she moved appointments around for him to be seen. Her name is Dolores and she saved his life in my eyes. By the end of the week, we had a diagnosis and were placed in the hospital.
He is in the protocol for standard high-risk ALL and has been in an experimental study as well. We have spent a lot of time in the hospital, somewhere around 85 days inpatient by mid-August. We are currently inpatient until then for a month’s stay. Keeping up with medical bills and additional expenses has been trying. We have a high DED plan so we have owed a lot since he was diagnosed end of last year and our DED started again in January.
We have been self-isolating still so we spend a lot of time at home. While many people are moving past COVID we are still in the thick of germ mitigation and being careful of exposures. We do try to find ways to have fun and enjoy things we can. We take more walks and try to keep a good balance of free time in our schedule.
Deklyn shows that he can try to overcome many obstacles. He was born with some birth defects and medical issues outside of Leukemia now and has always been a brave and powerful boy!
Declan was diagnosed with b-cell acute lymphoblastic leukemia on July 1, 2020, at the age of two and a half. Declan began bruising easily in the spring and since he is a pretty rough boy who loves to be outdoors we didn’t think much of it. As time went on he started bruising in less common places, his spine, chin, and forearms. He had a big belly which we also thought was pretty common of toddlers but it actually ended up being his liver and spleen swollen from the cancer. About four days before diagnosis he started having problems walking and was unable to lift his right leg to climb stairs and could not run anymore either. We already had his doctor appointment scheduled at that point but I knew something was wrong then and we moved his appointment up to an earlier date.
Declan has had 14 lumbar punctures, seven different chemotherapy drugs, a PICC line placed in his arm, three blood clots, an infusaport placed in his chest. Many blood and platelet transfusions and several hospital stays. He was unable to walk for several months and still goes to weekly physical therapy to help gain his strength back. Due to Declan’s cancer and the covid pandemic I’ve had to cut back my work hours to be home with him and his brothers. He has two older brothers ages 12 & 10 and a baby brother who was on one week old when Declan was diagnosed.
We are very cautious about being around other people, have had some financial setbacks and a lot of stress. Life, in general, can be stressful, and add in four kids and one with cancer it has definitely changed our lives.
Ethan is very friendly and outgoing. He smiles and laughs a lot at anything. He can be pretty goofy at times. He loves to play sports. His current interest is in soccer but he’ll play with anything that involves a ball. Bowling us his other passion.
Ethan was diagnosed with ALL on June 9, 2021. We noticed that he was having bruises that were unexplainable. He also had a limp about two weeks prior to diagnosis.
Ethan is receiving chemo, lumbar punctures, and bone marrow aspirations to monitor progress. His chemo includes oral, IV, injections, and intrathecal forms.
We were a dual-income family but now only one of us is working. I still haven’t returned to work yet and don’t know when I will. Our family is still trying to grasp the diagnosis and working with Ethan’s brothers to help them understand and adjust to the new “normal”.
