‘Get in the car and head to Children’s Memorial. Do not stop for coffee. Don’t get food. Drive straight there!’: Woman shares younger brother’s battle with leukemia

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“It was the morning of September 11th, 2001. I was 25 years old at the time. We were living in Chicago and awaiting our car service to pick us up. We were flying to visit my mom and little brother in Los Angeles. As we waited, we listened to the radio. Chad, my then fiancé, (not my favorite word and I’m not even sure I’ve ever said it before, but in hindsight, it’s relevant to the story), had on Mancow Muller, a Chicago shock-jock. He said a plane had just flown into the Twin Towers. I thought it was a poor choice in humor and said to turn it off. Then he said a second plane hit. We ran and turned on the television. We were now watching the horrific events unfold live. Our car service then called and said all planes were grounded, and he didn’t think we’d want to wait at the airport. None of us grasped the magnitude of what we were witnessing or how our lives were about to change.

I called my mom to say the flights were grounded and it didn’t look like we’d be flying out today. She had been looking forward to Mac (9) having our son, Rider (4), come to play for a little break. Mac had been getting dizzy and vomiting randomly. She had it narrowed down to he could no longer ride the spinney rides at the Santa Monica Pier, which he did often, nor eat red sauce at night. Pizza and spaghetti seemed to be a trigger. He was a little more tired than normal, but he surfed and was in football at the time, so she thought he was just playing hard. We were all disappointed, but again, we didn’t understand the lives lost at the time.

Three days later, we were on the first flight out of Chicago to Los Angeles with all the businessmen who had been in hotels for days, longing to go home and see their families. You could see the grief on their faces with the awareness it could easily have been them on one of the planes that never made it home. There couldn’t have been 25 of us on that first flight. No one spoke. Everyone seemed to have the same goal: Get to family.

big sister with brother while in raft on the water
Courtesy of Summer Germann

During that trip, we took Mac and Rider to the beach, the pier, and the arcade like we always did. We couldn’t go too fast in the car or Mac would say he was dizzy, but he didn’t slow down. He liked to aggravate Chad (they were like brothers), so he’d pretend to dry-heave in the front seat of the car to get Chad to slow down, and then laugh when he did. He did in fact get nauseous on the night we had pizza, so clearly my mom was right; red sauce no longer sat well with him.

During this weeklong trip, Chad and I drove to Las Vegas. We had been together since we were 15 and already had our son, Rider. I never wanted to get married, because if anyone said, ‘they got married for the baby’ I’d have to sock them on the spot, and we had a couple family members I know for sure were just waiting to say it. While there, we decided to ‘elope.’ We had a limo come and argued the entire way there. Traffic was so heavy. We both said if we ever got out of that limo, not only were we not getting married, but we were also never speaking to each other again. It’s funny as I look back how much I thought would change in that moment, yet nothing did.

As the limo pulled up to the Little White Wedding Chapel, I refused to get out of the car. We never fought. Bickered, yes, but never fought. We’d get called Lucy & Desi, Archie & Edith, but never a real fight. Friendship first, always. In this moment though, I refused to get out of the limo. In came the chaplain. This good ol’ Catholic boy was in a limo about to marry me with a woman chaplain in a drive-thru in Las Vegas. I figured God was really on my side of the fight with this one, so if he’d go through with it, so would I. It was so perfectly us. The wedding was for no one but our little family. We had nothing to prove to anyone. The next day, we drove back to Los Angeles and the second part of our story began…

We spent the last night with my mom and Mac in Santa Monica at the beach. This was Mac’s worst night yet, but he was 100% all day and still gave 100% at football practice, so we truly thought it was just an allergy or a bug. We flew back to Chicago the next day. Mac was hospitalized at ULCA Mattel’s a few days later. The diagnosis was severe strep and tonsillitis. He was inpatient for a couple weeks. I remember feeling so torn, knowing he and my mom were in the hospital for so long and she had barely showered, nor had she got to go home to pack an overnight bag. The doctors had determined there wasn’t anything they could do until the swelling of his tonsils went down, so they kept him inpatient and waited.

Since Chad and I had been together for so long, I also didn’t want a wedding reception, but while Mac was in the hospital, Chad and my family started to plan a surprise wedding reception for us. It was for the end of October, so Mac could get his tonsils out, recover, and everyone could celebrate. When it was time for them to travel to Chicago, Mac still wasn’t any better, so the doctors said it was just a waiting game and to let him go celebrate his sister’s wedding.

On the day of the reception something was clearly wrong, but he had been hospitalized for so long and we had a diagnosis and knew the plan, so we just had to wait it out. In hindsight, we sound so naïve, but this was long before pediatric cancer was so prevalent. The internet was still dial-up, flip-phones had just become a thing, and life was different. We didn’t know a single person with cancer at that time in life, so it wasn’t even on our radar. Mac looked pale and the boy that was the life of every party, didn’t even make it 20 minutes. He wanted to go home and watch tv. A family friend there worked at our family’s general practitioner’s office and told us to bring him in on Monday. My mom did just that. She had known them for at least 30 years. They knew her love for her children. They knew our entire family.

big sister holds her little brother when he is young
Courtesy of Summer Germann

When my mom and Mac left the doctor’s office, they called me right away. She said, ‘Summer, Dr. Albanese thinks Mac has Leukemia. We didn’t tell your mom. You need to wake up first thing tomorrow morning, get them in a car, head straight to the city, and go to Children’s Memorial. You do not stop for coffee. You don’t get food through a drive-thru. You get in that car and drive straight there.’ I had no idea what Leukemia was at the time, but I knew the woman on the other end of the phone and if she was telling me this, she meant it. So, we did just that. My mom, who is anything but passive and quiet, got Mac ready, and we all got in that car and headed to a life we never even knew existed.

It was October 31st, 2001, Halloween, and we were in the ER of a Children’s Hospital. An entire hospital with every room filled with just children. At that moment, I realized how blessed my life had been. Here it was Halloween, and I was so sad I might not be able to take my son trick-or-treating. I think we all thought they’d give Mac an anti-biotic and we’d hit traffic on our way home. The longer we sat in the emergency room, the higher the rate of the parking garage was going to be. These are all things you think about before… before your world is turned upside down and we realized it would be months before Mac would ever get a breath of real, fresh air outside the hospital.

young boy in the hospital battling childhood cancer while doctor checks him
Courtesy of Summer Germann

They came in and took blood. Right off the bat, they knew something was wrong. They pulled us aside and said Mac had tested positive for Leukemia. The tests they were running now would determine if Mac had ALL (Acute Lymphoblastic Leukemia) or AML (Acute Myeloid Leukemia). If it was ALL, it was treatable and they’d have a plan. If it was AML, we had a real problem, and it wasn’t going to be good news. In true Mac fashion, they came back and said not only did he have ALL, but he also had AML, which was extremely rare. Bi-Phenotypic Leukemia had a less than 1% survival rate, and at this point, it was nothing more than a doctor combining science and art, hoping they get the treatment just right, like splattering paint on an artboard to create a masterpiece. There weren’t any promises. There were zero guarantees. There wasn’t a plan of treatment.

little brother in hospital battling childhood cancer bed with face paint on
Courtesy of Summer Germann

Mac would be hospitalized over the next year at least 90% of the time. We never mentioned the ‘C’ word. We never said cancer. We never talked about treatment in front of Mac. To this day, we have no idea if he had any idea he ever had cancer. The most we said was, ‘the orange medicine was fighting off the bad guys,’ and that was that. As rough as it got, the days weren’t long and somber. We played, laughed, ate, and grew to love the staff as family. His room was decorated from wall to wall like a party. Mac created a list of all the things he wanted to do. Looking back, it was a bucket list, but at the time, it was just Mac’s list so every day could be Mac’s Day.

Food was the only thing that got him through rough days. Through intense treatment, mouth sores, acid reflux, third degree burns from Graph vs Host Disease (a side effect of stem cell transplants), Mac ate. We ran around town getting him whatever he wanted, because ironically, he couldn’t eat anything raw, including vegetables and fruit, due to pesticides and his immune system. At that point, he might have single-handedly kept Popeye’s Chicken and Wendy’s in business. His steroids were in full swing. If we forgot to check his order and there was lettuce on the sandwich, he couldn’t eat it. He’d then morph into a cranky 99-year-old man, and we’d all have to duck because that sandwich would go flying.

little brother on the beach playing
Courtesy of Summer Germann

One day, I was on a ‘Wendy’s run’ for him and got rear-ended. I remember calling my mom to tell her. Mac answered. I told him to tell mom what happened and the first thing out of his mouth was, ‘Does this mean you didn’t get my chicken sandwich?’ He had such a delivery. All you could do was laugh at his ruthlessness. We all miss this feisty spirt of his and memories like this. His nurses loved him as if he was their own. There is a gift in these moments that you don’t see while you’re living through it, but it’s the gift of time and being present. We didn’t take one second for granted. We often talk about how blessed we are that we got one entire year to spend every day with Mac. So many people lose a child in an accident, and they didn’t get that time. Others live a lifetime, without any quality time or knowing their children, but we got this one year to know, breathe, and feel exactly what mattered in life. On the eve of Thanksgiving 2002, our story took a drastic change.

It was November 26th, 2002. Mac had just spent weeks in the PICU after his stem cell transplant. Even though the stem cells were the best match possible, they are still foreign cells, so the body does everything it can to fight them off. Picture third-degree burns inside the mouth, throat, lips, and all over. Mac’s skin began to blister and peel off spot-by-spot, leg-by-leg, arm-by-arm. We were told night after night that Mac wasn’t going to make it. There were so many moments when I know we all stopped breathing, every single one of us in the room, including the nurses. How is it humanly possible to look at a child you love so much going through all this, without feeling as though you are, too?

Siblings stand together, big sister has her arms around little brother
Courtesy of Summer Germann

Miraculously, however, Mac went from the PICU back to 4th floor pediatrics and was set to go home cancer-free! We packed up his room in the hospital so he and my mom could hop in the car the next day and drive to my house. I was five months pregnant and had a 5-year-old at home more than two hours away, so I headed home thinking I’d see Mac the next day and I needed to get the house ready.

I had just gotten out of the shower. The next day was Thanksgiving, and we were so excited they were going to be home! Out of nowhere, my mother-in-law pulled in my driveway and asked why I wasn’t answering my phone. I told her I was in the shower and asked why? She said I needed to get to the hospital ASAP. I said, ‘I’m sure it’s fine. I’ll call them.’ We’d been through this so much in the past month it wasn’t really registering for me. I checked my voicemail’s and there were messages from nurses saying to come now. The hospital was at least an hour and a half away, but Chad was working near the city. I called him and repeated what I was told. He had missed so much work in those past few months, so he said, ‘I’m on my way, but I swear, if they’re just doubting him again, I’m going to lose it.’ It was completely understandable. None of us doubted Mac. He had been given a 1% chance of beating the cancer and here he was a year later, cancer-free, so the words often got old. We got to the point where we would think, ‘Ya, ya. I hear your statistics, but let me show you the spirit of a child, and not only any child, but Mac’s will.’ I told him to call me when he got there, and I’d be behind shortly.”

Summer and Mac’s story continues here

Big sister takes a selfie with her brother who has childhood cancer
Courtesy of Summer Germann

This story was submitted to Love What Matters by Summer Germann of Venice, California. You can support Brave Gowns on Instagram and their website. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

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