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.
Hope session by Dillybar Photography | Facebook