“Everyone has defining moments in their lives which change them. Moments so big, things get categorized as being either before or after ‘it’ happened. Like many people, one of these moments for me was the birth of my children. It wasn’t the usual water breaking or induction date scheduled kind of birth. It was the ‘you have pre-eclampsia and we need to take these babies before you get worse’ kind of birth. Yes, babies: identical twin boys born April 10th, 2017 at 31 weeks.
They were big for premature twins at 4 lbs 2 oz each, and for the most part their time in the NICU was spent growing and learning to eat. When they were three weeks old, I was holding John when his monitor started going off–something that wasn’t unusual and was sometimes caused by their shifting, but his heart rate was over 300 beats per minute. The nurse came over and adjusted it, but his heart rate stayed the same for another 20 seconds before coming back down to a normal rate. Their care team at the time decided that they needed to look into it, and John was moved so they could better monitor him in case it happened again. It did, and after consulting with a cardiologist, they told us, ‘John has super ventricular tachycardia (SVT), which will require him to be on medication to control these episodes until it resolves itself or requires surgery.’ It was terrifying.
Both boys would come home about three weeks later after spending 45 and 49 days in the NICU. Aside from the quarterly trips to the cardiologist, their regular appointments with their pediatrician, and the occasional cold or gastro bug, both boys were healthy. They were growing into these little humans with their own unique personalities and quirks that were always on the go, riding scooters or going to swim lessons.
In May of 2019, they started going to daycare, and we anticipated they might get sick a little more often since they would be around more kids, and they did. But a few months later, right around the Fourth of July, I started to get this sinking feeling in my stomach that something was wrong. The boys had both had a cough that was lingering after a summer cold, but about a week later, we woke up in the middle of the night to Dean crying and covered in vomit. He didn’t have a fever, and he said he felt better after he threw up again immediately after I got him cleaned up, so we chalked it up to a stomach bug. The next day, John did the same, except he was throwing up nearly everything he ate or drank. We took them to the pediatrician who told us that there was a gastro bug going around and to keep them hydrated with Pedialyte and water. By that night, they were both able to keep some chicken broth and Pedialyte down, and they were back to their usual selves the next day.
This scenario played out four more times between July and October of 2019. Each time, I found it harder to quiet the sinking feeling in my gut or the voice in my head screaming that something was wrong. Each time it was something different, but that cough they had was still lingering around. By October, John really wasn’t acting like himself, was asking to be carried more often than not, and had lost about 10 lbs. I was so certain that something was wrong that when my fiancé, Jason, brought them to their pediatrician, I said, ‘You need to do blood work and I will not leave until you do so.’ We were never able to find anything out from that blood work, because in the days following, John got sicker and his cough had gone from bad to worse in a matter of days. We took him into a local ER, where they took more blood and started him on a breathing treatment. Just as they started the breathing treatment, they came in and told us, ‘Your boy is severely anemic and neutropenic with basically no immune system. He needs to be transferred to UC Davis immediately.’ This was about 45 minutes away.
Looking back, I remember the strangest details about that day, but what sticks out most was Dean making sure that anyone who came near his brother knew to be careful with him because he didn’t feel well. He went up to everyone and would look at their face, then their ID badge, and then back to their face before asking, ‘That’s you, right?’ He even ‘helped’ wheel John out to the ambulance and inspected it before he was okay with following behind with Jason. At the time, it all felt so surreal. The ambulance ride; arriving at the PICU; family coming to pick up Dean so that we could focus on John, who was now on isolation and wanted nothing more than to go home. It was the end of the world anytime anyone other than Jason and me touched or even looked at him. We spent most of that first night awake and attempting to console him. It wasn’t even 8 a.m. when the care team came by and said, ‘We are going to run some more labs and then check with the pediatric hematologist and oncologist to see if we should run any other tests before starting a blood transfusion.’ At that moment, the anxiety and gut feeling I had been trying to silence for months pinged, and before any of the tests came back, I knew something was really wrong.
When they came in that Monday afternoon they told us, ‘We think it’s one of two things. Either an extremely rare bone marrow disorder which is preventing him from being able to make blood, or leukemia.’ I even said the word before they did because I just KNEW it’s what it was. Tests run that morning confirmed my sweet boy had leukemia: B-cell Acute Lymphoblastic Leukemia, to be exact. In that moment l felt a pain I had never felt before, an all-consuming, completely helpless kind of pain. They had a treatment plan ready to go, and the next morning, he would have the first of many surgeries to get a PICC line placed. He would also have a bone marrow biopsy, so we could know more about his leukemia and how it was presenting in his body.
We spent another week in the hospital before being sent home with a variety of medications, a huge binder of the ins and outs of ALL, and a calendar of upcoming appointments and weekly lumbar punctures. We went home and tried adjust to our new normal, which included battles over taking his medication or us flushing his PICC line, waking up at 2 a.m. for mashed potatoes because steroids make a hungry boy, and random emotional outbursts. The other big change was between the pain in his legs from the leukemia itself and being bed bound for more than 2 weeks, John was unable to walk and had to be carried everywhere. When John was diagnosed, it was briefly mentioned that because the boys are identical twins, there was an increased chance of Dean also having it. Because they were over the age of 1, however, the odds weren’t quite as high. In fact, we were told, ‘It is so unlikely, you have better odds of winning the lotto.’ Still, I was concerned and planned on having his blood work monitored.
My concerns grew as over the next few weeks, I noticed things in Dean I had seen in John before he was diagnosed. He was having bloody noses in his sleep and losing weight, and his injuries weren’t healing at a normal rate. I had that sinking feeling again. I vividly remember talking to one of the nurses about it after John’s lumbar puncture. It was Tuesday, November 26th, and even though everyone told us it was so unlikely and they’d never seen it diagnosed in twins so closely together, every ounce of my being was screaming that something was wrong. The next day, we had their pediatrician order labs and took him over, but much like John’s, they ended up not mattering.
That evening when we got home, Dean had spiked a fever and nothing was bringing it down. We dropped John off with Jason’s parents and took Dean to the same ER where we had taken John a month before. I knew that I’d likely be treated like a paranoid cancer mom for bringing him in, and I was. It wasn’t until his labs came back that we were brought to a room and told our suspicions were likely true. He too was severely anemic and neutropenic and needed to be transferred to Davis. By the time we actually got there and got into a room, it was 4 a.m. on Thanksgiving morning. A few hours later, the care team came in and confirmed, ‘Both your boys have leukemia.’ It felt like being stuck in some kind of messed up Groundhog Day where all your nightmares are real.
The only upside this time was we knew what to expect with the treatment plan and were somewhat prepared for the next steps. What we weren’t prepared for were some of the complications that Dean had during that first month. A few days after coming home, he was readmitted for an infection, but the biggest one came around Christmas. We noticed that his drawings and overall demeanor had changed significantly, and he was having frequent headaches. He was drawing tight, concentric circles and was getting out of bed only to eat. This was so odd to both of us, but because of episodes from our favorite shows (Thanks, Dr. Who and Eureka!), Jason asked him, ‘Are you drawing like that because it’s what you are seeing?’ As soon as he told us yes and that he saw these spots on everything, we took him in. They checked his eyes, did a CT, and were almost ready to send us home when the pediatric neurologist saw a blood clot in his brain, and so we were readmitted on Christmas Eve. Thankfully, it wasn’t too severe and wasn’t causing any shifting or swelling, which meant that he wouldn’t need surgery. They started him on an anticoagulant, and a few days later we were back home.
It’s been 101 days since the initial diagnosis, and in that time, we’ve been shown incredible kindness and generosity from those close to us and people we’ve never met. Communities of families with similar struggles have welcomed us with open arms and helped us understand this journey. Their care team has gone above and beyond in so many ways: bringing a tree to our room in the middle of the night as a Christmas morning surprise, learning ‘Sunflower’ by Post Malone, or saving a coloring page because it has Thor on it for these Avengers-obsessed boys. We’ve been blessed to have the support system that we do, both near and far.
I’d be a liar if I said it gets easier, because it doesn’t; you just get better at dealing with it. Sometimes it’s hard not to get angry, but I refuse to let that anger consume me and rob me of joyful moments. I’ve found that celebrating every little victory, no matter how small, and looking for at least five things to be grateful for everyday have made a huge impact on my mental health. It helps me stay present and mindful so that I can enjoy every second I have with my boys. I’ve also learned to trust my intuition more, even when it seems crazy, because it hasn’t let me down yet.”
This story was submitted to Love What Matters by Aston Dominguez. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories and YouTube for our best videos.
Read more from Kacie:
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