William was diagnosed on March 4, 2021, with leukemia. He had no symptoms other than a few small patches of petechiae and a few small bruises. We were at a routine pediatrician appointment for his asthma and I asked her to look at the red spots on his tummy and she noticed two small bruises on his hands. She knew and blood work confirmed cancer. He has done pretty well so far but is very high risk as he was not clear at the end of induction and has the MLL rearrangement.
He’s been through a lot of LPs and 5 hospital stays so far. He’s been neutropenic through a lot of treatment so far so we have been very isolated. That’s probably been the hardest part. That and my husband and I both working from home throughout.
We also have a 9-year-old daughter who has had to go virtual with school and miss a lot of time with friends. We also have a 2.5-year-old son who struggles to understand changes and isn’t sleeping well. Balancing everything without much help due to being isolated has been a struggle.
Through all of this, William shines bright! His smile lights up every room. His laugh is infectious and he’s charmed all the hospital staff.
Lily was diagnosed with cancer when she was 5 months old. Before she was diagnosed, we noticed that her eyes started wiggling back and forth. An MRI was done and showed that she had bilateral tumors on her optic nerves.
Lily started her first treatment at 7 months of age. She has spent most of her life on chemotherapies and most recently a clinical trial. Due to the tumors being on Lily’s optic nerve, she suffers from low vision. We are hopeful to find a treatment to stop the tumor from growing.
Much of our focus has been on getting her well and it makes it difficult to focus on her brothers. The financial and emotional burdens of this disease are difficult.
Haylee woke up in the middle of the night complaining of severe leg and hip pain. As time went by, we tried giving her Tylenol and the pain seemed to just keep getting worse. I took her into the emergency room on that Sunday morning where blood work revealed that things weren’t right. We immediately were sent to Children’s Hospital in Omaha where Haylee would undergo a bone marrow biopsy on Monday morning revealing that she had Leukemia.
Haylee has been undergoing IV chemotherapy, oral chemo at home, and chemotherapy injected through lumbar punctures periodically. The biggest struggle we face because of treatment is the emotional toll that it takes on us. It is hard watching your 6-year-old child go through something so awful knowing there is nothing else you can do about it. The other struggle is juggling time off work for appointments, costs of travel, and keeping stress levels down.
This diagnosis has changed our family life in many ways. Our family has always been tight-knit but has grown even closer since all of this has happened. We are more cautious about what we do and the people that we are around due to germs. We have learned to truly cherish all of the moments that we have together and make the best out of an awful situation.
Before Hudson’s diagnosis, I noticed a rash called petechiae on Hudson’s forearm just shortly before diagnosis. I knew what this was caused by as I work in medicine. I began to watch for other subtle symptoms such as paleness, bruising, appetite changes. I monitored his temperature for a few days. His temperature was elevated and he was running low-grade fevers, also a sign of childhood cancer. I called our pediatrician and requested a CBC to check his blood counts for leukemia. An hour after labs were drawn we received the crushing news.
Hudson has needed a lot of fine-tuning and adjustments during treatment. At diagnosis they found one possible leukemia cell in his spinal fluid, making him CNS2A This has required more lumbar punctures and chemotherapy into his spinal fluid. Nothing about this diagnosis has been easy physically or mentally. He continues to show his strength and resilience and power through the side effects and pain he’s enduring. At different points in treatment, he stopped walking, talking, and eating. He’s endured more pokes, tubes, and procedures than anyone should in their life.
There are many obstacles we have had to overcome and many more we will face. These obstacles won’t end when treatment ends. Every day there is an obstacle. Some are smaller than others. We’re all working through anxiety and PTSD from treatment and various experiences. We’ve noticed there are many triggers we will be dealing with. As his parents, we’ve had to overcome our own fear and do whatever is necessary to keep our child alive and as healthy and happy as possible.
We’ve realized our love is so much grander than our fear. With this diagnosis we’ve become isolated, we’ve lost friendships and experiences, and are mourning the “what if” life we would have had without childhood cancer. Hudson’s little sister Violet was not even 3 months old when he was diagnosed. This is the only life she knows. We’re honored to be parents to such strong and resilient children. This isn’t what their childhood should be like. Kids deserve so much more than this.
Lincoln was diagnosed with Leukemia on November 13, 2017, one month after his 4th birthday. About a month after the 2017-2018 school year began, Lincoln started to exhibit typical cold virus symptoms. About a week passed and his cough started to get worse, he had a recurring fever and an unexplained rash. After two trips to the pediatrician, the doctor thought he had a persistent virus and then bronchitis. He was put on a course of antibiotics but was not improving. On our third visit, the doctor thought he possibly had mono, so blood work was taken and we were told to go to Children’s Hospital immediately. We were told nothing else other than we were being admitted and they would have more information for us when we got there.
As soon as we got to our room, it was quite a whirlwind. They ran more tests and got him as comfortable as possible. It was later in the evening, so the Flight for Life crew was the ones to put his PICC line in so he could get started on the fluids and medicine he needed right away. After things were settled a bit, an oncologist came to visit us and told us what she suspected. She said she was not sure, but they believed Lincoln had leukemia. They would still need to do more tests. They did not know which kind yet. His tests had to be sent out of state because the results of his tests were unusual. Lincoln was officially diagnosed with acute bilineage leukemia on 11/13/2017. It took longer than usual to officially diagnose Lincoln because bilineage means he has two types of leukemia, both AML and ALL which is very rare.
Lincoln’s treatment plan is 3.5 years long. He is scheduled to be done this coming March. His treatment involves chemotherapy, steroids, spinal taps, bone marrow aspirates, and blood transfusions. Currently, he goes in monthly for chemo through his port (central line), quarterly for spinal taps with intrathecal chemo, and takes various daily oral chemo pills. Usually, the spinal taps are performed under anesthesia, but one of our fellow cancer warriors encouraged us to try it awake because the process is much quicker and he would not have to deal with anesthesia. He was the youngest patient to try it awake and we will never go back. Although he feels more pain with the awake procedure, for Lincoln, it outweighs the negative side effects he would have with anesthesia.
Lincoln made the transition from liquid or crushed pills in liquid to swallowing pills fairly quickly after struggling with the frequency and quantity of his required chemo. One of the most difficult things, in the beginning, was getting Lincoln to take his medicine. Many of the medications taste horrible and even mixing it with various things like chocolate syrup or applesauce didn’t do the trick. He would spit it out or even vomit and we would have to start the process all over again. Lincoln is now a pill swallowing champion!
Lincoln is doing well and has come a long way. We have become accustomed to the world of childhood cancer and it is part of our lives. He used to dread going to his appointments. Now, they are no big deal. Getting poked for a blood draw or in his port barely phases him. He still deals with some nausea and pain. One week out of every month, he takes steroids. The steroids disrupt his sleep and make him have very big emotions. This week is always difficult. Lincoln knows his body well and knows what to ask for when he needs it, so that is very helpful. Our family is also doing well. We have learned to roll with the punches and be flexible.
A childhood cancer diagnosis is something that affects the whole family in many ways. Lincoln’s brother and sister have been amazing, supportive, understanding, and loving. We could not be more proud of them. As parents, we are constantly on high alert for any tiny indication of fever or possible symptom of relapse. Many of the symptoms of relapse are the same as those of a typical virus. We try to focus on the positive and not live in constant fear.
Lincoln is doing well and has come a long way. We have become accustomed to the world of childhood cancer and it is part of our lives. He used to dread going to his appointments. Now, they are no big deal. Getting poked for a blood draw or in his port barely phases him. He still deals with some nausea and pain. One week out of every month, he takes steroids. The steroids disrupt his sleep and make him have very big emotions. This week is always difficult. Lincoln knows his body well and knows what to ask for when he needs it, so that is very helpful. Our family is also doing well. We have learned to roll with the punches and be flexible. A childhood cancer diagnosis is something that affects the whole family in many ways. Lincoln’s brother and sister have been amazing, supportive, understanding, and loving. We could not be more proud of them. As parents, we are constantly on high alert for any tiny indication of fever or possible symptom of relapse. Many of the symptoms of relapse are the same as those of a typical virus. We try to focus on the positive and not live in constant fear.
Emilio was diagnosed in July 2021 with ALL. He had a low-grade fever for 4 days and was cranky. Since he is so young I first thought the fever was due to him teething. On the fourth day, I took him in to urgent care just to check to see if anything else was causing his fever. I was thinking the worse case would be that he would have an ear infection or the flu. At the urgent care, the NP stated that she thinks his skin looks a little pale and yellow. She would like to order some blood work to check everything. I looked at my son thinking I couldn’t see what she was talking about. She stated that doing blood work within her clinic would take a few days for the results to come back so she highly suggested that I take my son to the ER to get his blood tested. This is when I started to get worried but was still hoping that maybe the NP was overreacting. I did take him to the ER that day and they did draw blood on him. A few hours later his results came back and showed that everything was critically low. That is when the doctor in the ER stated that these results point to Leukemia and that we need to go to the children’s hospital to be admitted that night.
So far in the first few months of his diagnosis my son has had 6 blood infusions, 2 bone marrow biopsies, 2 lumbar punctures, and an implanted port so he can get his chemo medications. With a third bone marrow biopsy and lumbar puncture scheduled to be done within the next week. As well as being impatient at the hospital for a month. My husband and I struggle to try to be there for my son who is sick and for our older daughter who is 8. Our daughter wants to have a normal life but due to my son’s illness, she can’t which is hard for her to understand.
It was extremely hard during the first month since our son was in the hospital, myself or my husband who have to miss work in order to be there with my son. Then the other parent had to be home to also take care of our daughter. Currently, I am unable to work because my son needs me to be with him and since we get insurance through my husband’s job it is very important for him to continue working. Struggling to be in multiple places at once, financially with bills starting to come in, and also trying to make sure both my kids feel loved and heard.
We’ve had to make some big changes to how we do our day-to-day tasks just to make sure our son doesn’t catch some other illness that could seriously injure him. We’ve had to have a crash course in care for a child with cancer, needing to know what are warning signs for him getting dangerously sick. Needing to know and understand everything about his medication and diagnoses is a lot to process. As well as explaining everything that is going on with him to our daughter in a way that she can understand and also not completely scare her in the process.
He is very strong at battling this, he doesn’t show that it will slow him down one bit. He is the strongest person I know and he is not even two yet.
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