Ann Collett, mother of William, an 11-year-old with Acute Lymphoblastic Leukemia, talks about how the National Pediatric Cancer Foundation has helped give him hope.
In May of 2017, William was experiencing bad headaches and feeling run down. They took him to a pediatrician who smartly ordered some blood tests, the results of which had her immediately sending William to UF Health/Shands Children’s Hospital. Later that night, he was diagnosed with B-Cell Acute Lymphoblastic Leukemia.
William was in intensive treatment until April 2018 and is now in the maintenance phase of treatment, which will last until September 2020. Treatment in maintenance is consistent for the duration: monthly chemo infusion, daily chemo pills, weekly chemo suspension, monthly inhaled antibiotic, and 5-day course of steroids.
At the time of diagnosis, he was about to finish 4th grade at Queen of Peace Catholic Academy in Gainesville, Florida. He spent most of 5th grade at home, doing his schoolwork remotely. He made it back for the last 5 weeks of school. William is now a 6th grader (same school) and is running the 3K on the school’s cross country team this fall. His favorite sport is basketball and he looks forward to trying out for the school team in the coming weeks. He is an avid Florida Gator fan.
For more information, visit www.nationalpcf.org
Neal Howard: Hello and welcome to Health Professional Radio. I’m your host Neal Howard, thank you so much for joining us today. Our guest is Ann Colett, she’s the mother of Will. Will is an 11 year old with Acute Lymphoblastic Leukemia and Ann is joining us on the program today to talk about how the National Pediatric Cancer Foundation has given both she and her eleven-year-old son some hope. Welcome to the program Ann, how are you?
Ann Collett: Great. Thanks for having me Neal, it’s a pleasure.
Neal: So Ann, give us a little bit of background about yourself.
Ann: Yes. Well I am the mother of William and Meagan and my husband is Tom and we live in Gainesville, Florida. And go Gators, we’re big Gator fans. And we have been on a journey over the course of the past year and a half with William having been diagnosed with acute lymphoblastic leukemia in May of 2017. So we’ve been really trying to embrace it as a family and not just manage William’s treatment but see ways in which we can make a difference and be able to plug in with organizations that are doing great work in this area.
Neal: How familiar were you and your family with this type of leukemia? Or were you familiar with leukemia at all before Will’s diagnosis?
Ann: Yes, boy that’s a great question. I have to say we were all in the same boat that we certainly heard of leukemia, I knew it was a blood cancer but didn’t have much more information beyond that or any personal experience with even knowing someone who had leukemia. And so it completely caught us off guard and we were always probably people who have been involved with various organizations in our community supporting different cancer organizations and other nonprofits and been aware of families who have gone through things. And I think as a bystander, you see yourself saying “Oh gosh, I feel for that family” or “I can’t imagine what they are going through.” And then all of a sudden, you are that family and that was our experience. Our lives turned upside down overnight and we suddenly became experts over the course of a few short weeks on what Leukemia is all about and we continue to learn. Every time we have some random, previously we say a side effect that we hadn’t previously experienced, then we become an expert in that too and so you’re just always on your toes, I guess would be how I would put it but it is far more common than what people believe. They call childhood cancer rare and having seen what I’ve seen not just through our experience at UF Health Shands Cancer Hospital but as you begin to read what’s going on around the country and around the world, when they call childhood cancer rare, I beg to differ.
Neal: Now I know we’re into October now and September is Childhood Cancer Awareness Month. Is this type of leukemia called childhood cancer because it only occurs in children or is this something that can be diagnosed later on in life?
Ann: Well certainly William being diagnosed at age 11, he I guess he was 10 when he was diagnosed but he has the childhood version of acute lymphoblastic leukemia and the protocol for treating children is different than adults and leukemia does exist as an adult in the adults world but the protocol for treatment is different and the survival rates are very different if diagnosed as an adult versus a child.
Neal: So I say that you would agree that early diagnosis is the key to longer survivability?
Ann: Well I think early diagnosis is always key regardless of the of the diagnosis or the timeframe, but certainly earlier is better.
Neal: What kind of symptoms was will experiencing to make you and the rest of your family say that something serious is going on, something above and beyond just your regular run-of-the-mill childhood illnesses like a cold or something like that?
Ann: Well for a couple of weeks, he had been feeling rundown and it was springtime and he has allergies and so he had dark circles around his eyes and just and headaches but that would be something that he would normally get at that time of year given the pollen and things like that. So we were treating it with claritin and other over-the-counter type things and then he was just so very rundown and started getting headaches. And it was Mother’s Day weekend 2017 and he just had such a bad headache on that Saturday and Sunday that I held him out of school on Monday and said “We’re going to go to the pediatrician and see if maybe you have some sort of infection because it’s just not like you to not be outside and running around and being full of enthusiasm.” So we went to the pediatrician 11 o’clock in the morning and 5 4 o’clock that afternoon we were looking at a leukemia diagnosis at UF Health Shands Cancer Hospital.
Neal: So the family just came together as one offering lots of support and love for Will and you as well. I understand that you’re in the what they call the maintenance phase of Will’s treatment, how is that treatment going and how is he doing today?
Ann: He is in … now and it’s going very well. The first several months of treatment, with leukemia the hope is that you get into remission within the first 30 days then thankfully William did. But then you’re faced with another eight to nine months of very intensive chemotherapy treatment and then you hit what’s called maintenance and he’s in maintenance right now. He started it March-April timeframe this year and the beginning was a little rough because we had a hard time getting his counts where they needed to be and so that he could actually resume in his life and return to school but we finally got all of that in order and it was really a factor of him, getting his body getting used to new meds and things like that but he’s back in school. He started middle school, he’s in sixth grade and he’s running cross-country for the school’s team and he’s thriving in his school work. Most of last year, he spent doing fifth grade remotely from home and his school Queen of Peace Catholic Academy, they’ve just been wonderful in working with us in getting his studies online and him being able to keep up with his work even when he is out. But maintenance, while it allows you to return to this sense of normalcy where we’ve sort of returned to what I call ‘a new normal,’ he’s going to school, he’s participating in activities, we still have to check the counts on a regular basis. And by counts, we mean that his immune system is compromised because of the chemotherapy that he still takes. And when someone’s taking chemotherapy, their immune system is compromised and therefore more susceptible to a common cold or an infection more than you or I would be. And so we check those counts on a regular basis and if they’re too low, then we have to pull back on activities and exposure to other people and you will certainly be sensitive to that as we approach the flu season that is on the horizon. And we’re certainly sensitive to it with him going to school with hundreds of kids every single day as well. But about two weeks ago, he had a spinal tap which is one way that he receives chemotherapy and he had a very bad headache that came as a result of this final and so the unexpectedly, he ended up being out of school for seven school days. And so while you get on this groove, we were feeling so good school started in the middle of August and we’re trucking along, we’ve not really missed much school except to go to an appointment here and there. And then all of a sudden, something like this headache side effect from the spinal jumped up and sort of put a stop to everything in our world. And so these are the things that as you are in treatment and you’re going through and you think you’ve sort of got everything under control, you never really know what’s going to come next because there’s always going to be some sort of bump in the road and so you have to be prepared for that and know that it’s going to happen and we were informed that these things would happen so it wasn’t like it was a surprise but you always hate to see a child suffering like he did with a headache for more than a week.
Neal: Where can our listeners go online and learn some more about the National Cancer Foundation.
Ann: Well I would send to their website which is nationalpcf.org
Neal: I’ll be sure and put that in our description so that folks can navigate to that website and learn more. Thank you so much Ann for joining us today, it’s been a pleasure.
Ann: Thank you so much Neal.
Neal: You’ve been listening to health professional Radio, I’m your host Neal Howard. Transcripts and audio of this program are available at hpr.fm and healthprofessionalradio.com.au. You can also subscribe to this podcast on iTunes, listen in and download at SoundCloud and be sure and visit our Affiliate Page at hpr.fm and healthprofessionalradio.com.au