At almost 3 years old, Austin was diagnosed with B-cell Acute Lymphoblastic Leukemia (ALL). In the blink of an eye, his parents went from planning his third birthday party to being the newest members of a club nobody ever wants to be part of – the childhood cancer club.
In her own words, Austin’s mother Kimberly Schuetz shares the story of her son’s diagnosis, treatments, multiple relapses and the journey to CAR T-cell therapy.
Austin was a very happy, energetic, always on the move toddler. He was a whopper when he was born weighing in at 9 lb. 11 oz. and had never really been sick other than the common cold every so often that he picked up at daycare. He was one of the rare kids that never had even had an ear infection.
It was early spring when my husband noticed a lump smack dab in the middle of the top of his head. It appeared as if he had bumped it, we assumed at daycare or something as he was just about 3 years old. We watched it and as a couple of weeks went on, it wasn’t going away. I decided to take him to my doctor to take a look at it. It appeared that it might be a cyst of some sort and we were told to just keep an eye on it. As a nurse myself, I thought this was a fair plan. After all, he was happy, energetic, eating well, sleeping fine. A couple of more weeks passed and I noticed that the hair where the “cyst” appeared was now gone. There were still no other “signs” of anything out of the ordinary.
It wasn’t until Mother’s Day weekend of May 2011, when Austin and I had taken a weekend trip back to Illinois to see my in-laws since my husband was away for opening fishing weekend, that the red flag appeared. Literally overnight he had lymph nodes the size of golf balls appear on the left side of his neck and some smaller on the right.
My heart immediately raced, I became nauseated with fear and panic. As an oncology nurse for adults, my mind raced with horrible thoughts and it was like I knew instantly. I called my husband and told him that I thought Austin had cancer and that I wanted to take him to the ER to get checked. He of course tried to calm me down and talk some sense into me.
Really…what were the odds that he could have cancer?
Upon our return back to Wisconsin, I took him to his pediatrician on that Monday. When Austin was in the room, he was full of energy and was running around playing with all of the toys.
I looked at the doctor and asked, “Could he have cancer”? He replied, “Kids that look this good don’t have cancer.”
He was diagnosed with possible strep and an ear infection (which he had never had in his life). The lump on the head still was there as well, but still no clue what it was.
By Thursday, nothing had gotten better in terms of his lymph nodes despite being on antibiotics. I had been talking to everyone I knew and insisting that I thought it was cancer. I was looked at like I was crazy and close friends tried to reassure me that it was just a virus. My mommy gut wasn’t buying it. I was able to get him into the pediatrician again, same office, different doctor. To this day, I thank God for her prompt response. We walked in, she saw his lymph nodes, saw that the mysterious lump on his head had changed as well. It had gotten bigger and was now red and angry looking. She looked at me and said, “I don’t know what this is, so let’s just have you go to the ER and we will get him checked out”. I, of course, was hysterical and at this point had not heard any bad news. Just the thought of him having to go to the hospital and have testing done scared me to death.
Off we went. My husband met us there. They took some blood, admitted him, put him on IV antibiotics, did some scans and consulted ENT. At this point, they were talking about surgically removing the lymph nodes because everything else, including blood was coming back unremarkable. It wasn’t until the next day, Friday, May 13, that the doctor asked if the nurses could watch Austin in the playroom while we talked. He took us into a private room and said that they consulted a Hematologist at the local Children’s Hospital because Austin’s blood work came back with 7% blasts. He said he suspected that he had leukemia. My world stopped. It was like I couldn’t hear anything else being said. I was sick to my stomach. I felt like I was watching a movie. There was talk that we needed to be transferred to the Children’s Hospital and that we would be getting and ambulance ride. Everything was moving so quickly and it was only going to get worse.
When we arrived at the Children’s Hospital, we met the on service Hematologist, Dr. Patel. She stood there in the hallway looking at Austin, full of energy, exploring his new playground. She said that we would do a bone marrow biopsy in the morning but said, “He is not presenting like a normal leukemic kid” and that she was thinking these “blasts” were part of some strange virus. Of course that night I couldn’t sleep, I couldn’t eat, I could barely breathe.
Saturday, May 14 at 6 a.m. our son went into the “sleepy room”. Two hours later, as we were in his hospital room playing, Dr. Patel peeked her head in our room, eyes to the floor, her head shaking, her face serious. Our nightmare was just beginning. It was confirmed he had B-cell ALL [Acute Lymphoblastic Leukemia].
My mind raced, I cried, I got sick. So much had changed in the blink of an eye. Just the other day we were planning his 3rd birthday party and pictures, now we were talking about ports and chemo. He started chemo immediately after a PICC being placed.
Dr. Patel had some information that she was waiting to tell us about his cytogenetics until it was confirmed. By the end of the week, he was getting a port placed and he was put into the High risk category due to the MLL translocation. We were given a book about childhood leukemia to read. I didn’t even want to look at it. I was an oncology nurse. I knew and was terrified of the road ahead of us.
My husband the engineer started to read as this medical world was completely foreign to him. All I remember him saying was that he read about MLL and from what little there was about it, was nothing I wanted to know because it was all grim prognosis.
We were now in the club that nobody ever wants to be a part of, the childhood cancer club.
Our summer plans were now replaced by weekly hospital visits, being afraid of every germ out there and not wanting to be near anyone for fear it would complicate treatment and kill our son. Austin did rather well with front line treatment. We learned that he was to have a total of 3 ½ years of chemotherapy, along with cranial radiation due to him having leukemia in his brain at the time of diagnosis. Day by day, the chemo and hospital life became “normal.” Austin became a leukemia warrior, so brave for 3 years old. I still couldn’t believe that we were doing this with our only child. I was angry at times. This wasn’t what we had dreamed of when wanting to plan our family. I was an oncology nurse. I was supposed to take care of others with cancer, not my own baby.
Once Austin reached maintenance, we were excited to have a more “normal” life again. Treatments would be less frequent and there would be less chance of complications. Austin returned to preschool and daycare. He was so happy to be with his friends again because all he ever wanted was to play, play, play. We were getting the hang of daily at-home chemo when about 6 months into maintenance, Austin came down with a fever in October. I tried not to panic and think the worst. After all, it was flu and cold season and he was in school and daycare. It was something that was going around. But since he had the port, protocol was we had to go to the hospital for evaluation. Of course, fevers only seem to spike in the middle of the night, so off we went to our Children’s Hospital. We got there, labs were done, antibiotics started, and then we waited. Hours had passed and every time I asked about labs, I was ignored. I knew, as this was the hospital I worked at, that the labs should be back by now. I finally got sick of waiting, so I logged onto the computer with my access, pulled up his labs and there I saw it on the screen. He had 98% blasts in his blood. He had relapsed. I immediately emailed Dr. Patel and she called me back in minutes. On October 18, 2012, she was on her way in at 5 a.m. to have a discussion that I was always terrified of.
We sat down and because Austin was high risk, because he had relapsed so soon and while on treatment, our only option was a bone marrow transplant. I started to shout every single expletive on the tip of my tongue. I was mortified. I have taken care of these people in transplant. That was my job. It’s like putting them on the brink of death and praying that you can bring them back. Now I was going to have to do this with my baby.
Thoughts raced through my brain and they weren’t good thoughts either. I had seen even when a patient gets through transplant, it’s the aftermath you have to worry about killing you too. I worried about infections and graft vs. host disease. What I mostly worried about was having to plan my son’s funeral. Dr. Patel pulled me right out of that and said, “Kids are so much different than adults. You have to forget what you know.” And so I did. I had to in order to get through the next step.
Austin was in the hospital after finding out he relapsed for 5 weeks total. He was in isolation all 5 weeks as he tested positive for flu. He was re-inducted with different chemo to try and get him into remission as every time there is relapse, the cancer can get smart and try and mutate and be harder to get rid of. That hospitalization was a nightmare. He was on such high doses of steroids that he was literally psychotic. He was on all sorts of meds because all he did was scream and cry. We had to sedate him through it and it seemed like torture for all of us. While he was fighting for his life, there was a search being done for a bone marrow donor. What seemed like waiting for a lifetime, 2 perfect matches were found, one male and one female. The male donor was pursued and had committed. Of course every day I worried not only about Austin’s health but also the health of his donor. I would pray that he wouldn’t get in an accident or come down with some grave illness. After all, he was my son’s lifeline.
The time had finally come in February for us to proceed with transplant. Austin was admitted a week before the big day. He had another PICC line placed, started chemo to wipe his entire immune system away along with 3 days of twice a day total body irradiation in which he had to get sedated for every single time. We had a day of rest and then February 28, 2013 came, transplant day. His “re-birthday” as we call it. His transplant took 6 hours as over 600 mL of his donor’s bone marrow dripped into his little 4 year old body. We prayed that this would be our answer. That this was going to save his life and cancer could be a part of the past for us.
Austin did very well through transplant, just like he did in frontline treatment. This kid amazed me with his strength. We had no complications and after 5 weeks, we were out of there. We still had to be at the hospital weekly for labs and check up, had to be in isolation at home for 6 months, but we were going home and he was cancer free.
Two months after his big day, in May 2013, we went in for the first of the every two month surveillance bone marrow biopsies to monitor his progress and make sure everything was looking good. Two days after that biopsy on a Saturday, Austin and I were at home playing in our isolation bubble while my husband was at work trying to get some hours in. I heard the door open. It was late morning and I knew he wasn’t going to be home until late afternoon. But there he was, coming down the stairs with tears in his eyes. He looked at me and said that Dr. Patel had called him and told him that his biopsy was MRD positive. His cancer was coming back. Austin was right there and heard it all. He still talks about it today that it was the only time that he saw his dad cry in his life, the day he had to tell him that his cancer was back.
Dr. Patel came out to our house on that Saturday. There of course was no plan yet. She came just to give us support and to sit with us, devastated as badly as we were and in disbelief. On that Monday, we went to clinic and discussed trying to wean him off of his anti-rejection meds in hopes to kill off the remaining leukemia with donor cells. After 2 weeks, another bone marrow biopsy was done and MRD was lower. We were hopeful that this was going to work. In the meantime, doctors were investigating other options. Austin had another bone marrow biopsy 2 weeks later again in which his MRD had risen. We had to have another plan.
Now I know as an oncology nurse as much as anyone else that when someone relapses after transplant, there aren’t a whole lot of other options out there. We were told that Austin would have a less than 20% chance of survival and that we would have maybe 6 months left with him. But fortunately, his transplant doctor, Dr. Capitini had a plan, a last stitch plan to try and save his life.
It was immunotherapy, CART-19 at the Children’s Hospital of Philadelphia. It was something I already knew about being in the field and remember seeing a story about it on the Dateline News back in the Winter of 2011. It was about the first child, Emily Whitehead, to be treated and cured of her leukemia.
I remember watching that show on the couch with my husband and turned to him and said, “This is going to be big for the cancer world.” Little did I know that we would be using that technology 2 years later to save our own child.
Austin was immediately admitted to the Children’s Hospital for T-cell collection. Ironically the department that I work in does the apheresis procedure for this. So I was able to handpick my co-worker of my choice to do his collection and told her to do the best damn collection of her career. The cells were collected and shipped where we prayed they would grow and expand the way they were supposed to. Austin got more chemo to get him into remission again and fortunately succeeded yet again.
The process to get us to CHOP seemed like a lifetime. All the while praying Austin’s disease stayed under control. We ended up flying to Philadelphia in August 2013 to do the consent meeting with Dr. Grupp. It was all so surreal. I couldn’t believe we had to go this route to save our son. At this point in time, it was all supposed to be over with and here we were starting from scratch. Not to mention that this was a trial and by no means a guaranteed cure. But what else did we have? All we had was hope.
At the end of September 2013, our family headed out to Philadelphia, the place we would call home for the next 6 weeks. Austin had more chemo to make room for the engineered T-cells and on October 1, 2013, Austin became patient #21 and received his “killer T-cells.” October 2, he had a second dose. Then we waited. We waited for the “storm” to happen, to see the signs that his cancer was being killed off for hopefully the last time. Austin was MRD negative when he received his cells and had a few cells found in his brain. We were told he might not have much of a “storm” since there wasn’t a lot of disease to go after. About 6 days later, he started to feel not himself. He was having excruciating headaches and low grade fevers that led us to be admitted. We were inpatient for about 2-3 nights for pain control and were discharged. It’s weird to say, but I was hoping for more of a “storm” because in my head, the more we had the better the leukemia was being killed off for the last time.
After the day of discharge, we waited. We went for weekly, sometimes bi-weekly labs. He was feeling pretty good after his “storm” so the rest of our time in Philadelphia was like a long vacation. We were able to see a lot and build a lot of lasting memories.
About 4 weeks after his infusion, the big bone marrow biopsy was scheduled. This was the one to find out if it had worked. I was a nervous wreck. Everything was on the line this time. It was done and it was more waiting.
At this point in time, it happened to be Halloween, which is my birthday. We were out taking Austin trick-or-treating in a nice suburb of Philadelphia, him having a great time getting loads of candy in his Ghostbuster costume, me fixating on when we would get the call with results. While Austin was ringing a doorbell, my phone rang. It was Dr. Maude. She said, “It worked. His cancer is gone.” I started yelling and screaming to my husband. I was crying hysterically and yelling to the lady giving Austin candy at her house that my son didn’t have cancer anymore! She was crying and then asked if I wanted a beer. It was and is to this day, the best birthday present I could have ever asked for.
We then were able to pack our stuff up and finally go home. I was thrilled beyond words but was also cautiously optimistic. I knew that this was not the end. There were a lot of what-if’s in the future as I knew that not every child’s T-cells persist. All we had to do was hope that Austin’s would, as I am not sure if there were any other options.
We did our every 3 month travel to Philadelphia for bone marrow biopsies. During this time, we ended up finding out who Austin’s bone marrow donor was. Turned out he was a 55 year old man named Doug that was from Baltimore. He ended up driving to Philadelphia while we were on one of our follow ups and he hasn’t missed one since. It’s been so great and so special to see their immediate bond. Austin says, “Dougie is family, right momma?”
At the 6 month bone marrow biopsy, engineered T–cells could not be found in either the marrow or his blood, however, Austin still did not make any B-cells. The option to re-infuse the remainder of his cells frozen was presented to us. We knew that it wouldn’t hurt him but what we didn’t know is if it would help. We decided to do it.
Today, Austin is 8 ½ years old. He is in second grade, in Cub Scouts and is happy and healthy 3 ½ years post CAR T- cells. He still does not make B-cells. I look at him every day and thank God, science, and research that we have him with us. Every time I look in his eyes, at his smiling face, every time I hear his laugh, I am reminded of the only thing I held on to when he was sick….Hope. I see the miracle that he is, the miracle of science and research.
Not a day goes by that I don’t think about what he’s been through and of course a mom will always worry. Day after day it does get easier, but I still panic at a bump, a bruise, a cough, a cold. Lab testing day brings back the PTSD of the last 6 years. It is my burden to bear, not his. I just want him to grow old and be happy. We are privileged that this technology made it possible. I look at Austin as a pioneer in the cancer world and I am so proud that he is mine.
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