In September 2018, Tori Donahue and her husband experienced their worst nightmare when their eldest child, son Luca, was diagnosed with acute lymphoblastic leukemia. After a 10-month battle, Luca, 9, is now in remission, but he relies on the chemotherapy drug vincristine — which is part of his three-year treatment plan — to stay healthy. Recently, just when the Donahues were returning to their new normal after Luca’s cancer battle, news reports revealed that vincristine, the life-saving drug so many children rely on to keep their cancer in remission, was experiencing a dire production shortage.
After immediately going into a panic over the future of her son’s health due to this shortage — “my heart stopped,” Tori shared — the mom-of-three decided to take action and created a petition to encourage our government to ensure production of this drug is never halted again.
Because Tori’s story and fight are so important, we chatted with her about Luca’s cancer battle, how his diagnosis changed her as a mother, and what we can do to help make sure all kids have access to the life-saving chemotherapy drug vincristine in the future.
Name: Tori Donahue
Location: Scranton, PA
Children: Luca, 9, Serafina, 7, Delaney, 2, and baby #4 due in May
You’re a mom-of-three with another little one on the way! Tell us a bit about your family.
I am a stay-at-home/work-from-home mom. I used to own a bridal shop and floral design studio, but when my son, Luca, was diagnosed with cancer last year, that all came to a halt. I now work for a fashion and lifestyle blog and it allows me the flexibility to take care of all the kiddos and their needs without being spread too thin. Life with three children is crazy, and it’s about to get even crazier come May, but it’s a good crazy, so we welcome it with open arms.
Your son Luca was diagnosed with acute lymphoblastic leukemia (ALL) in September 2018. What symptoms was he experiencing that suggested something might be off with his health?
At the time of Luca’s diagnosis, he was literally experiencing textbook leukemia symptoms. The day I took him to the emergency room, I knew he had leukemia before the doctors even presented me with any lab results. There were some longer-term symptoms that didn’t really make any sense or add up until the end, like a decrease in appetite and weight loss. We were chalking this up to it being summertime and him just being a lot more active. I also worried that his decrease in appetite was maybe a result of him becoming more self-conscious of his weight. I didn’t know if he was maybe being picked on at school for being a little chubbier in the belly or what. I never thought it was a medical issue, though.
A week or two leading up to his diagnosis, we started noticing more serious symptoms like extreme fatigue, irritability, paleness, night sweats, huge swollen lymph nodes, and then petechiae on the day I took him to the hospital. We actually brought him to his pediatrician before I took him to the ER, and she told me he had seasonal allergies. I knew this wasn’t right, so I brought him right into the ER that night.
Can you tell us about the day Luca was diagnosed?
It was a bit of a blur, but I can tell you that it was hands down the worst day of my life. We brought Luca into the ER that night around 9pm. They had us in the waiting room for three hours, and finally, I lost my patience and started screaming at someone to come and draw his blood. I said, “I don’t care if you don’t have a room, I just need his blood work done right now.” When I told the doctor my thoughts (that he potentially had leukemia), the doctor laughed in my face. A few hours later when they received the lab results, the doctor came into the room and asked me to step out into the hallway. My heart sank because I knew. He said they had to get him out of there right away and to a children’s hospital and asked me where I wanted the ambulance to take us. I replied with the Children’s Hospital of Philadelphia, and then I excused myself to go to my car and screamed at the top of my lungs for about 15 minutes before coming back inside and carrying on with what was the beginning of this journey for Luca and our family.
How did that day change your family and you personally as a mom?
I never thought this would happen to me. I was always a worrier as a mom but never to the point where I actually thought I would ever be the parent of a child with cancer. I mean, what are the odds? Childhood cancer is not super rare, but it’s not super common either. Whenever I saw posts on social media or commercials about sick kids, I would say, “NOPE. I could never. I wouldn’t be able to do it.” I used to cry when my babies got shots.
Then, I became that mom.
I’ve had so many people say to me over the past year, “I don’t know how you do it, you’re so strong. I could never be as strong as you.” The bottom line is any mom who loves their child the way I love mine could and would do it. Not because we want to. I don’t want to have to be strong. I never wanted to have to show anyone including myself that I could physically endure the pain of having a sick child. Luca never asked for this; none of us asked for any of this. I do what I do on a day-to-day basis for my children because it’s what they need me to do. The silver lining of it all is that we have grown together so much more as a family unit. We love harder, we appreciate life so, so much more, we don’t worry about stupid, small unimportant things, we just live life differently, and for the better.
Tell us about Luca’s 10 months of treatment at the Children’s Hospital of Philadelphia.
Luca’s induction and consolidation phases of his treatment were brutal. We were in and out of the hospital for 10 months straight, and when we weren’t staying in the hospital, we were driving from our home in Scranton back to Philly for treatment several times a week.
He was on various types of combination chemotherapy treatments, some of which were debilitating. The physical toll these treatments took on Luca was a lot, but the emotional toll was also unbearable some days. He is such a good, strong, sweet boy. He has always been so positive and empathetic and to see his sweet spirit so broken, that was the hardest part for me. Watching him so sick, losing his hair, etc. was so difficult, but the mental and emotional experience of hearing my child say at times that he wished he was just never born because he couldn’t bear the toll of cancer anymore was gut-wrenching.
Luca is now in remission but is continuing to receive treatment for ALL. Can you explain that a bit more?
Acute lymphoblastic leukemia is a type of cancer that is treated long-term even after remission is achieved because of its previously high risk of relapse. Luca’s treatment course from start to finish is a total of three years. The first 10 months were the most intensive, now he is in what we call “maintenance,” so he goes out to the clinic once a month and receives a dose of IV chemo. Every other appointment, he has a spinal tap where they inject the chemo directly into his spinal fluids, and then he is on a daily chemo and medication regimen at home as well.
The drug vincristine helped Luca reach remission, but according to recent news reports, there’s been a dire shortage of this chemotherapy drug that helps so many children battling cancer. Can you tell us how vincristine helped Luca and why access to this drug is so important for other kids?
Vincristine is the very first chemo that Luca ever received, and it has been the only consistent chemotherapy he has and will continue to receive throughout the entirety of his treatment. It’s the backbone of his treatment regimen as well as many other childhood cancer patients’ regimens. It not only helps children who are fighting cancer achieve remission, but it’s also keeping them in remission.
Last month, news broke that there was a shortage of this drug. Unlike other drugs that we have experienced shortages with in the past, this situation is unique because there is literally no suitable substitute for vincristine and the pharmaceutical company that was producing the only generic version of this chemo discontinued manufacturing in July due to “business reasons,” AKA it wasn’t profitable enough for them. Children have since been denied this drug or had their vincristine dosages withheld from them at certain children’s hospitals across the country because there is literally not enough to go around, putting our children in serious risk of relapse. It’s important to note that, at this time, the drug company Pfizer has resumed delivery of this drug, but they’re still looking at the risk of shortage in December and January.
As a parent, how did you feel when you heard the news about the vincristine drug shortage?
My heart stopped. I immediately went into a panic.
Can you explain the reason for this shortage?
There are several possible causes for this shortage from what I’ve gathered. First of all, pharmaceutical companies have been running into these manufacturing delays more and more over the last several years because they’re operating out of old facilities that are not meeting certain FDA standards, so they basically get help up until they change or update conditions to meet the standards. The other reason is that, as I explained before, this drug is currently only being produced by one company, Pfizer. The other company that was producing the generic version (Teva) discontinued its production in July. And again, because there is no suitable stand-in for this drug, the pharmacists have absolutely no other option to administer to patients in its place.
After hearing about the vincristine shortage, you took action by creating a petition to urge our government to regulate production of this life-saving drug. Why did you decide to take action in this way?
The bottom line is we need our government to step in and regulate this drug market. There is practically no regulation of big pharma, as far as I’m concerned, and that needs to change. Right now, these drugs are only being produced on a supply and demand basis, and while I understand that’s what these drug companies need to do for certain medications, with vincristine, we’re talking about a life-saving chemotherapy drug for children that there is absolutely zero replacement for. There should be a stockpile of this drug ready to go for our children. Our government should be contracting these pharmaceutical companies to produce this drug in bulk and have it on hand and ready to go at all times.
What can our readers do to help this cause and make sure kids battling cancer always have access to this life-saving drug in the future?
Sign the petition and reach out to your local and state politicians and urge them to create legislature that secures and ensures certain life-saving drugs for our children.
What do you wish others knew your/your family’s life and fight in dealing with pediatric cancer?
There’s truly nothing I could say to get anyone who hasn’t experienced it firsthand to even remotely understand what a fight like this is like or how it affects the entire family. We are so grateful for where we are today, but the last year was so, so hard. There were days I didn’t think I could go on and days when I know my son didn’t want to go on. Days I thought my marriage was going to end, so many hours spent in therapy sessions with my daughter who was so deeply impacted by her brother’s sickness.
To feel like you made it through the fire just to be dealt another potentially devastating blow, one that could be completely preventable (like a drug shortage), is a hard pill to swallow. We made it out alive the first time, but I honestly don’t know how we would do it again. Please, please do what you can to get this problem the attention that it deserves, and please pray for the families whose children have been impacted by this shortage up to this point.
To sign the vincristine shortage petition and urge our government to regulate production of this life-saving drug, click here.