“Sometimes I wonder if I am dreaming. I look around and feel like I don’t belong in my own life. The past eight months have been a sh*t storm. My two-year-old has brain cancer. Never ever did I think I would have to spit those words out of my mouth. But I did, and I do, and it changed everything.
In October of 2017, before Tre’s 2nd birthday, I noticed he was getting super clumsy. But he was a toddler, and most toddlers are naturally wobbly. Yet this felt different. He was holding on to the wall when he would walk, sometimes he would just fall right over. It was strange, and I casually mentioned it to my family and friends. Most hadn’t noticed anything, and thought it was probably nothing. I casually brought it up to his pediatrician at his 2-year checkup the first week of November.
He wasn’t alarmed, and Tre didn’t have any other obvious symptoms, but he trusted my gut. Thank heaven. He referred me to a pediatric neurologist for another opinion. Two weeks later I was telling the same story to him, and he wasn’t alarmed or worried either. But he also thought that I knew best, so he ordered an MRI just in case. Two weeks later, on November 28th, 2017, my entire life changed.
It was supposed to be a chill day. I was going to take Tre for his MRI, then grab a drink, and run to Target for some retail therapy. I was so oblivious to the fact this could end up bad, so I went to the MRI alone. I had convinced myself that I was just being paranoid. And once the scan confirmed that, we could get on with our day. Tre had been in the scan for maybe 10 minutes when the nurse came out to me in the waiting room. I was happy to see her and wondered why the scan was done already. I wasn’t prepared for what she said next. I couldn’t have been prepared. Nothing in life prepares you for this.
‘We found a mass on the bottom of his brain. I am so sorry. Are you alone? Can you call someone to come be with you?’
No words. I closed my eyes, hoping that would make this nightmare stop. It didn’t. They were going to do a more in-depth scan, and then send us right over to the neurologist to discuss the results. I knew this wouldn’t end well. My mama instincts were right, but I would have given anything to be wrong. Anything.
My husband and niece came up to the hospital. My mom went to tend my other 5 kids at home. Tre woke up and we walked across the street to the doctor. I can’t imagine how hard it must be to give bad news to parents about their kid. The mass was on the back of his brain, and it looked like it may be medulloblastoma, a childhood brain cancer. There it was, the word we were all dreading. How in the hell does a 2-year-old get cancer? Why in the hell does a 2-year-old get cancer?
We were then sent home to pack a bag and drive up to Primary Children’s Hospital to have surgery. Yes, they wanted to remove it ASAP. The doctor they wanted to remove it was out of town, so he had to fly back in early for surgery the morning of the 29th. They also did another scan of his brain and spine once we got to Primary’s. It showed spots on Tre’s spine. The nightmare was getting worse. It still felt unreal. I was still hoping to wake up from this bad dream. But we didn’t. It was our new life, our new normal. And I hated it.
His surgery was 12 hours long. They successfully removed the tumor and didn’t think they would have to go back to get any more residual parts. Hallelujah. Best news yet! It wasn’t an easy recovery. He spent some time in the ICU, and then was transferred to the Neuro Unit. He was a different kid. He couldn’t walk anymore. He couldn’t control his arms and legs like he used to. His left eye was distained, and it worried me. They told me this was all normal. And he would probably regain most of the motor skills he lost after surgery.
That hospital stay was maybe the hardest. He was only supposed to be there for a week but ended up staying for almost 3 weeks. He had internal bleeding, which required emergency surgery and more time in the ICU. I felt like a zombie walking around. I was emotionally and physically drained. Tre’s health consumed my every thought. But I still had 5 other kids at home, who were worried, lost, and sad.
His diagnosis was confirmed while we were inpatient. Stage 4 Medulloblastoma, with spots on his spine, but not in his spinal fluid. How do you even process this information? One minute at a time, that’s how we made it through. Hours were too much, so we just focused on getting through the minutes. But even that sucked.
We went home for a week and were going to start his inpatient chemotherapy treatments on December 20th. Yep, right before Christmas. His cancer is very aggressive, so they didn’t want to wait. So, we had an early Christmas at home. And it was amazing, and wonderful. But it was hard not to obsess over what was coming next.
Trying to take care of 6 kids is a hard job. It pushes you to your physical and emotional limits daily. And now, I had to turn that job over to others, so I could be with Tre in the hospital. It’s a good thing my family is the most amazing family ever. I have 3 sisters and a mom who stepped up to the plate and got to work. They made a schedule of everything my kids were involved in and figured out how to get it all done. And they did. Not once did I have to worry about the needs of my children at home. I knew that they were being loved, and very well taken care of. That was such a relief. My neighbors stepped up also and helped with carpools and brought us dinners throughout the entire treatment. We would be lost without them. We were surrounded with so much support. It truly was inspiring. Money was donated, rides were offered, lawns were mowed, food was prepared, my house was cleaned, my children were loved. We were blessed for sure.
Tre did 6 rounds of inpatient chemotherapy, and 3 stem cell transplants. For most of his treatment, he was confined to his room to keep him healthy. We usually stayed inpatient for 3 weeks, then went home for a week. Only to repeat the process the next week. The days were long and hard. Tre felt horrible and watching the side effects of the drugs was hard. Having to hold him down for blood draws and dressing changes was hard too. He didn’t want to be there. He didn’t understand what was going on. He was mad, and I was too. Cancer is the worst. One of the chemo’s he received has a side effect of hearing loss. So, they would monitor his hearing after each round. We found out after the 3rd round that he was already losing high pitch hearing in his left ear. I was usually tough in the hospital. Honestly, I felt dead inside, so it was hard to show emotions. But that broke me. It wasn’t fair. Tre didn’t deserve this, no kid did.
The last rounds with the transplants were hard. Tre was sicker, and more worn out. He was used to the hospital life at this point, which made me super sad. He would cooperate with the nurses during vitals, he knew what they needed and helped them out. This broke my heart. I hated that this was his new normal. He probably didn’t remember life outside the hospital. He didn’t know that he had an amazing life at home, with brothers and sisters who adored him, and missed him like crazy.
Our last day inpatient was July 3rd, 2018. He did it. We did it. We rang the chemo bell after his blood transfusion was done that day. He didn’t know what was really going on, and he may never remember it. And part of me is happy for that. I want him to know how courageous he was though. How he handled cancer like a champ. He smiled even when he felt horrible. He gave out hugs freely. He did his physical therapy even when it was painful. He got out of bed everyday and tried to make the best of it. He sang his heart out with the music therapy girls. He yelled at us when he had had enough. He was so full of life, and so funny all the way though treatment. Sure, he had some pretty awful days, but he also had some pretty rad ones. He was an inspiration to me. His nurses and doctors were a big part of this too. We couldn’t have done it without their friendships, and support.
Tre will get his post-treatment MRI in two weeks. This will determine if the cancer is 100% gone. Then he will get MRI’s every 3 months for a year to make sure it doesn’t come back. The better he gets, the more time we will get between MRI’s. There are a lot of side effects from his chemo that we may not see for years down the road. So, his oncologist will follow him thoughout his childhood to monitor those and offer support when needed.
It is hard to explain all the emotions I am feeling. I am thankful, always thankful. I am also still sad about the diagnosis and how it changed everything. I am mad about it too. And then I feel guilty for feeling these feeling, because Tre beat cancer. And I personally know many moms who can’t say that and will forever have a hole in their hearts because of cancer.
My faith has also helped me though some dark times. I have had to decide what I believed. I had to practice my faith, and that was hard. I was mad for a long time. I even stopped praying out of anger. But this is my journey, and I know I will find my way. This will not break me. Cancer sucks, and that’s the truth. But because of it, we love harder, we laugh louder, and we hold on tight. Perspective is everything. And I am forever grateful for another chance at life.”
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