Super Seth’s Supporters!
Summer of 2017 was supposed to be so AWESOME!!! This was the summer that we had no plans: just swimming at our new house, riding our new bikes, and lots of trips to the beach! Instead of the busy summers of the past, filled with summer camps, swimming lessons, and vacations, we were going to have a casual, breezy summer enjoying each other and our new house. Apply the quote “Man makes plans…and God laughs” here.
I like to say this whole process happened the way it did because of snow and a loose Lego. Makes perfect sense in my head. We were supposed to go to Mammoth that weekend for a perfect, yearly family getaway of fishing and hiking and enjoying the beautiful warm weather in our favorite place. When we were looking up the hiking trails a few days prior, we found out that Mammoth had 20 feet of snow! Not the perfect summer vacation we were looking for! We were not planning on getting out the snowboards and sleds, so we cancelled that vacation and decided to let the kids go camping with Grandma and Grandpa instead. The night before they were set to leave, Seth rolled his foot over a Lego that had mysteriously spilled on the floor of his room. The next morning he was crying so hard that his foot still hurt that I took him to Urgent Care. The doctor said it was a sprain, wrapped it up, and said he would be bouncing around again in a day or two. So they were off with Papa and Gigi to have a week of fun!
Unfortunately, Seth didn’t have too much fun. His foot hurt him so bad all week, he couldn’t do anything. On top of that, he had a fever. When they got back, we told him “Stop babying it.” We thought maybe he was playing it up for Grandma. Well, he was not going to get away with it with us! But then, we noticed he started getting a low-grade fever that was not going away. He was losing energy. He was looking a little pale. And why in the heck was he not riding his bike? Don’t all kids want to ride their bike to the park?
So, it was time for a trip to the doctor. We have the BEST doctor! She took one look at him and didn’t like what she saw. She even said that, “I don’t like this, Mom.” She sent us for blood tests, which she was rushing for an extra cost and an x-ray of his foot. This was the first time Seth was going to get blood drawn. Oh my goodness, I was terrified! He was going to scream and cry and kick the nurse in the shins. Nope. He sat there, calmly and WATCHED! He is his mother’s child for sure! The doctor called later that day and said the blood tests did not show anything as serious as she thought. That’s when it got weird. The word LEUKEMIA popped into my head out of nowhere. I know nothing about the disease, I have never researched it, I have never known anyone who had it, and I don’t even know the signs, but it was screaming in my head. I said, “Did you think it was leukemia?” She said YES! What the heck?! But she said thankfully, the blood tests did not show it to be that serious and it must just be a virus. He was to stay resting, inside, and eat iron-rich foods, as he was low on red blood cells (anemic). Whew! That was a close call! I even called one of my friends and told her what a close call that was. The doctor called a couple of days later and he was feeling much better. He was eating, gaining back some energy and looked less pale. Great!
So, the Fourth of July came and went. We had a pool party, fun! The school carnival was a blast. That next day, the fever came back, and this time with a vengeance. It was really high and I couldn’t get it down with Motrin. It was this way on Monday, Tuesday, and on Wednesday night, I started worrying that there was a serious problem. I thought maybe we were dealing with something more than just a virus here. He was not eating and I could start to see his bones in his back and his ribs. He looked pale and yellow and his eyes were sunk in and had dark circles. He had zero energy. There was just no light in his eyes. So I called the doctor the next day and they had something on Friday morning. Ok, I was not going to panic. We could wait another day. It’s just a virus, right?
I dropped Noah off with Grandpa so he wouldn’t be bored again at the doctor’s office. When we arrived, they weighed Seth. He lost 5 pounds in three weeks! What? The scale never goes that way for me. The doctor took one look at him and she knew. And then I knew. I just knew. I could tell by her body chemistry, the way she moved quicker, the tone of her voice, something. She called the nurse in for a finger poke to check his hemoglobin. She stood over her, tapping her foot while she waited for the results – very unlike her. The minute that device beeped, she asked to see me in a separate room. Then I really knew. My heart was in my throat. I almost didn’t want to follow her. I was so dizzy and clouded in my head. I thought if I run down the hall and out of this office and get in my car and just drive, would this nightmare end? Do I have to follow her? She shut the door and told me to sit down and said I had to get into my car and drive immediately to Children’s Hospital Los Angeles. Do not pass Go. Do not collect $200. She said she thinks Seth has leukemia but she doesn’t have the diagnostic tools here and there is no time to waste. She said if he does have it, he has to be treated immediately and they are the best in the world and he will get the best care there. She said you cannot drive alone, it is not safe. Call Jimmy and tell him to meet you there. I just stared at the wall. Ooooooooooooooookkkkkkkkkkk. Allllllllllllllright. She said to be strong and be brave for Seth. Pull it together, Lisa. Don’t fall apart right now. He needs you to do this for him. She was actually very perfect in that moment. She was sweet, but not too sweet. She was comforting, but didn’t let me wallow. I had a job to do. This is exactly when I put on my robot suit. I still have that suit that I wear time to time. All moms have one. It’s how we survive these kinds of moments.
So, the first call was to my husband. My voice was in that low, shaky, serious tone that he knows not to joke around with. I told him to shut down his computer and pack up his stuff because he now has to go back to the hospital that HE BUILT because his son will now be a patient in it. Dads must have a robot suit too. “I’m on my way.”
I decided to go alone. I needed to keep my robot face. If I went with anyone, I knew it would crack. The problem is that Seth, my music soul mate, didn’t want the radio on. And he fell asleep! So, I was completely alone with my own thoughts in pure silence. I remember repeating in my head, “Just drive the car, just drive the car, just drive the car…” That’s when I started my motto of “One Hour at a Time.” I knew I just had to get there without getting into an accident. I thought I will just stuff everything down into my stomach and I will throw up later.
The rest is a blur. Doctors, tests, waiting and more waiting and worried faces and phone calls. Finally, we were pulled into a small, suffocating room by the ER doctor who told us we were on the road to leukemia. We were to go to the 4th floor where we would learn all we never wanted to know about this disease and be treated up there. We were speechless. We looked at each other with tears in our eyes and didn’t have any words. You see these things happen to other people or you see the commercials on TV but you never think it will happen to you.
I will never forget the walk down the hallway of the 4th floor. It felt like we were in a parade to our son’s deathbed. I was in a bad dream and I wanted to wake up immediately! All the nurses were oh-ing and ah-ing about how cute he was and I barely heard them and didn’t even smile. I just kept thinking, “Oh my God, my son is going to die.” I didn’t know anything about leukemia at that time except what you see on TV with those sad bald children and I thought it was a death sentence. I thought we were about to watch our son die a slow, painful death. I was a walking zombie. I was in complete shock. That hallway felt like it went on forever.
So, here we are today. I used to run from the room when I heard the word cancer and now it’s a word we use everyday. Seth has been diagnosed with a rare form of leukemia called Ph+ ALL. This stands for Philadelphia Chromosome Positive Acute Lymphoblastic Leukemia. This is a rare subtype of leukemia that only 5% of children with ALL have. It requires him to be in a High-Risk category and he will have more aggressive chemotherapy. The treatment will be longer and some of it will be in-patient. The success rate is not as high and in the worst-case scenario it may require a bone-marrow transplant. That being said, a certain medicine has been used in the past five years that greatly improves results, so we can remain positive. Only time will tell, but I truly believe the best medicine we can give him is positivity, love, hope, and prayers. Luckily, we have the best support group who is willing to join his army and march behind him as he fights this beast to the very end! Super Seth is a fighter!