Caiden is your typical active and outgoing 5 year old boy. Loves swimming, soccer, baseball, being outside, building legos, and haning out with his siblings. On Tuesday September 14th, 2021 Caiden was diagnosed with Pre Cell B Acute Lymphoblastic Leukemia (ALL)
The last week or so of August I noticed that Caiden seemed to have a lot of bruising, most of it was on his legs which could easily be chalked up to being an active 5 year old but he also had some bruising on his back, arms and shoulders. Most of them were small and none looked incredibly bad, just seemed like more than he normally had. The first week in September I noticed that he seemed to have less energy, wanting to sit and watch cartoons more than normal and asking to leave the park after playing for only 30 minutes. This is a kid who at the end of July while on vacation was swimming for 6 hour stretches. He was bummed when we made him get out of the pool, he is also my kid who ran laps around the living room for fun. I also noticed he seemed to be eating less. Anyone who knows Caiden, knows he is a ridiculously hard to feed. Picky is an understatement. This was worse than normal though, asking for his favorites and then only eating 2 or 3 bites. Labor day weekend he spiked a 104 fever, but it broke that night and was back to normal the next day. Caiden’s little brother had been sick a few days before that and I kind of chalked it up to Caiden catching the same bug and just reacting differently. Caiden also began complaining of being cold every single day, Caiden ran around in a tank top and shorts at the beginning of the summer but was now cold in athletic pants and a T-shirt. All these things individually seem pretty minor, but it seemed like too many little things going on at once. Googling showed me 2 options, Leukemia or low Iron/Anemia. Low Iron is a thing for a few family members on both sides, so I thought that was probably what was going on.
On the 14th I took Caiden to the pediatrician. I was worried he would think I was being silly. Our old pediatrician retired last year and we had only seen our new one a few times. He agreed that we should run a blood panel to see if something more was going on. Looking back now, I wonder if he already knew. I didn’t bring up the fact that googling says it could be Leukemia, and he never brought it up either, but one of the last things he said to me as we finished up, was ” Just so you know, Anemia does not cause bruising”. He said he would call us later when the test results were back. That afternoon we went to the park with friends and had a great time, we had no clue that would be our last normal afternoon for the foreseeable future.
I dropped our 2 oldest kids at swim team at 5p and decided to wait in the parking lot until they were ready to be picked up. At 530 the pediatrician called. I can’t even remember most of what was said. Just that the blood work was very concerning. Some numbers were way too high and some numbers were way to low. These types of numbers could indicate Leukemia. We needed to get to Children’s Hospital in Omaha tonight, by 8 at the latest. All the arrangements had been made and they were expecting us, Caiden was what he called a “direct admit”, he told us to pack a overnight bag.
I called Mike and tried to explain what the doctor had just said, but I’m pretty sure I just cried as told him to call his mom or his sisters and find someone to come stay overnight with the other kids. I went inside to get the older kids, I told them that Caiden was sicker than we thought and he needed to go to the hospital to run more tests. We packed a bag and headed to Omaha around 6. Oma came to stay with the kids and keep our house running.
Once at the hospital it wasn’t long before we were up and situated in his room on the 5th floor, which is Oncology. Lots of questions and doctors and nurses in and out while they talked about all the tests they would be running. Every single one who sat down to talk to us, first asked us what we had been told and why we were here. I’ll never forget thinking, they know he has cancer and they are trying to gauge if we know he has cancer. At 9p three doctors came in together to tell us the news and the next few steps. I don’t remember much of the conversation, I was numb and speechless. They assured us that most Leukemia is very treatable, we would find out his type and then proceed with a plan. The first thing Caiden needed was a blood transfusion though. Caidens Hemoglobin was at 5 and the normal range is 12-15. Anything below 7 and you are in need of blood. Caiden had more blood drawn, chest X-rays taken, and an IV placed (having to hold your child down while they scream to please take them home is something no parent should ever have to do). A little after midnight they started the blood transfusion, there is a risk of allergic reaction so they are monitored very closely for 4 hours while it takes place. Thankfully Caiden did not have a reaction to the blood transfusion, but it was a long and stressful night.
On the 16th Caiden had his first surgery and dose of chemo. The surgery included placing a port into his chest under the skin, a bone marrow biopsy was done and a spinal tap to test the fluid in his spine and place chemo directly into the spinal fluid. They told us to anticipate spending 2 more weeks in the hospital. We got to come home from the hospital on the 24th, after just 10 days. We are looking at an average of 2.5 years of treatment. The support we have already received is amazing and we are incredibly grateful to have so many people loving and praying for us. We will continue to focus on the positives, because even in hard and terrible situations there will be bright spots!