John was diagnosed with ALL on October 21, 2019, and his identical twin brother Dean was diagnosed 37 days later on November 28, 2019.
Both of the boys had been sick for about four months prior to their diagnosis. Each pediatrician visit brought a new answer like a gastronomic bug or hand foot mouth disease, but the week before John was diagnosed we requested that they do blood work. He was sick again and had been sent home from preschool.
By this point he had lost about 10 lbs, was asking to be carried everywhere, was having frequent nosebleeds at night, had bruises all over, and didn’t seem like himself. He had a really bad cough that continued to get worse over the next two days before we brought him into the ER. They found out he was neutropenia and severely anemic and transferred him to UC Davis. He was admitted to the PICU and diagnosed the next day.
He came home 10 days later and over the next few weeks, I slowly started to see similar symptoms in Dean and demanded he have bloodwork done. The same day we took him to get bloodwork we ended up having to bring him into the ER, where they made the same discoveries and transferred him to Davis.
Dean seemed to have a harder time with the treatment initially and spent 20 of the first 28 days of treatment in the hospital. He had started to draw tight concentric circles, which was unusual for him and was complaining of headaches. On Christmas Eve my fiancé thought about an episode of Doctor Who and asked Dean if he drew circles because that’s what he was seeing. His answer led to us bringing him in and them discovering a blood clot in his brain.
Both boys have had surgeries to have PICC lines or ports placed, or both in John’s case, more than 25 combined lumbar punctures and bone marrow biopsies, blood and platelet transfusions, chemo, and Dean gets a shot at home twice a day for blood clots. Some days we’re at the cancer center 2-3 times a week depending on their treatment schedules and labs, and if one of them is in the hospital that means that one of us is there 24/7.
Neither my fiancé or I am able to work due to them needing round-the-clock care so we’ve had to move in with family due to the financial strain. The boys are no longer able to go to preschool and we have to be mindful of visitors and taking them out because we need to keep them healthy.
Throughout all of this, they both constantly look after each other and make sure that the other one is okay.
Before being diagnosed Veda was running a fever on and off for a few weeks, she was extra tired and had night sweats. She also had an enlarged lymph node behind her ear that wouldn’t go away. She was diagnosed with ALL on August 26th, 2020.
Childhood cancer is a constant battle for the child and anyone who is a part of that child’s life. Throw a pandemic into the mix and it makes for a very lonely time for all. Veda is going through chemo every other week at this stage of her treatment and at-home meds to maintain that her cancer stays away.
In the beginning, she had a port placed into her chest to make her treatments easier. It is always a stressful time to have her port accessed and de-accessed. She constantly wishes she could fast forward time so she could be done with this nightmare. She also has to be under anesthesia to have many lumbar punctures.
During this time of social distancing, it’s hard to get the support you need from your family and friends. All she wants to do is hug and kiss her grandparents again. We have had many tears but also some very great moments. She has been hospitalized a few times since her original diagnosis for fevers and being overmedicated.
Veda has a heart of gold and would do anything to make someone feel good. She always thinks of others first even if that means she goes without. At the age of 5, she has a wonderful outlook on life.
In the spring of 2018, Eliana was complaining of leg/hip pain and by the end of the day, she was limping. We knew we had to act quickly and rushed her to the ER. That night she was diagnosed with transient synovitis. We followed up with her primary care physician who was in contact with orthopedics and ordered lab work. Lab work showed high levels of inflammation and we needed to admit Eliana for further testing.
Once at the hospital Eliana’s condition improved significantly. She stopped limping and we were discharged after 3 days at the hospital. Two days later we received the call that changed our lives forever. The pathologist took a look at her lab work and found a blast, an abnormal cell. Eliana had to be admitted once again and start chemotherapy immediately.
Alexa was diagnosed with ALL in December of 2018. We were on a trip to visit family in Mexico. She had a fever a few weeks before, we got concerned so we took her to the ER but they told us it could be an infection. We were sent home with antibiotics.
While in Mexico, she stopped eating and seemed a little tired, so I took her to a pediatrician who immediately knew just by looking at how pale she was, but ordered labs before telling us anything. The next day, he confirmed what he had thought. She had Acute Lymphoblastic Leukemia and sent us back to the USA immediately to start treatment. We came back right away and went to the Children’s Hospital of Wisconsin where they were waiting already for us.
The beginning of treatment was so rough on her. We had to stay inpatient for 2 months because she has complications with a ruptured intestine and they had to fix it.
We are nearing the end of treatment so we want pictures to remember how far she has come. Through this journey, we have realized how strong she is and that she will never give up on anything.
In the Fall of 2019, Atlas began exhibiting a variety of symptoms and his behavior also seemed off. Nothing seemed to make sense or point to anything specific. It did not help that we were entering the onset of COVID-19 when doctors were using telemedicine more and more. He had random fevers. He cried in pain and discomfort but could not localize it. We noticed little pinprick markings on his body. He was generally lethargic. We could never reach a satisfactory explanation with his pediatrician.
We could not deny that his coloring was off and he seemed to bruise easily. He eventually stopped eating and his belly seemed swollen and solid. His pediatrician advised us to observe him for a while longer but we knew as his parents that something was just not right. His loving teachers at daycare agreed and with that, we took him to an urgent care annex of Dell Children’s thinking he was severely constipated. The physician on staff heard me talk through symptoms and noted his pallor and bruising. She ran a blood panel and we immediately knew his blood counts were ‘not right’. From there, we were transported to Dell Children’s Main where we received his leukemia diagnosis.
The initial days of his treatment were shocking and traumatic but the amazing staff at Dell Children’s Hospital and the community around us lifted us up. It made us thankful for the support that surrounds us. You never realize how much love is around you until something like this happens.
It also made us realize how precious life is. We can fill our lives with such unnecessary ‘busyness’ and suddenly we take the important things for granted. In an instant, a cancer diagnosis laser focuses your family on what matters most.
Certainly, our routine is different these days with our regular clinic visits and tending to Atlas’s needs but it’s a challenge we happily accept because, ultimately, it’s his journey back to health. The important thing is that we are living more in the moment while appreciating each other and the wonderful world around us.
He takes on his treatments with bravery and even empathy for those around him. When nurses are administering necessary but oftentimes, uncomfortable procedures, he manages ‘thank-yous’ through his tears. When other children are upset, it distresses him and he won’t rest until he knows they are OK.
Lucy ran a fever for a week with all negative results. So finally, they did bloodwork and found her white blood count was super high, which led us to the cancer diagnosis.
She’s had numerous lumbar punctures and bone marrow tests. She’s on oral chemo daily and weekly chemo at the clinic. The horrible steroids she takes approximately every month for a week causes her to have roid rage with emotional outbursts that she can’t control. It’s very hard on the whole family. Her big sister, Remi who is 10, has started counseling to help her cope better.
Our whole family dynamic has changed. We no longer can enjoy day-to-day things without thinking about germs, side effects, and possible sicknesses that can show up at any given moment. It’s very stressful for all of us.
