An interview with Dayna and Charlie, co-authors of My IgG book
Note: This interview features the parent of children with Primary Immune Deficiency (PI). It was not written by a healthcare professional and is not meant to replace the expert care of a qualified physician. Please consult your physician with any questions you might have about your health.
I first met Dayna at the 2005 IDF Patient Conference in Orlando, Florida. In talking with her I learned that she and her husband have three children: a five-year-old boy named Charlie, a three-year-old girl named Katherine and a two-year-old boy named Thomas. Early in our conversation I thought that either she or her husband or maybe one of her children had PI. What a surprise to discover that all three of her children have an Immune Deficiency! I had never heard of that before!
What I noticed immediately about Dayna was her passion to learn and understand more about PI, a chronic disease her children will likely have for the rest of their lives. She already knew a great deal but Dayna asked questions about the industry, about Immune Deficiency and about treating the disease with IVIG. She told me that she was very excited to be at the IDF Patient Meeting and that she was on a quest to gain as much knowledge as possible so she could go back to Las Vegas, Nevada, where she lives, and share it with others. Since that event I have seen and talked with Dayna many times. What I have come to realize is that she is an incredible parent. Actually, she is an incredible person, which makes her an incredible parent, spouse, friend and advocate for the PI community.
David: How is it that you came to the IDF Patient Conference in Orlando last year?
Dayna: I first heard about the conference via an IDF mailing, so my husband and I immediately began to plan to attend. Having three kids with PI, we feel it’s our responsibility to learn as much as humanly possible so we can pass on that information to our children as it becomes appropriate. As you can imagine, with three kids on IVIG, disposable income is limited, so when we heard about the IDF scholarship program underwritten by Baxter, we applied by writing an essay. We were overjoyed when we got notification our program fees and hotel costs had been covered. Our essay covered our desire to learn as much as possible, but also, to share that knowledge. We’ve found ourselves in a position of being asked questions about our children’s health we couldn’t answer, which frustrated us. We also felt strongly that we wanted to connect with other families and hear their stories. Finally, we wanted to be able to bring the information back to others. We left our children at home in Las Vegas, with a good friend who has a daughter on IVIG. Our first act after getting off the plane was to give her all the information we collected at the conference.
David: Tell me how each of your children came to be diagnosed with an Immune Deficiency.
Dayna: Our son Charlie had been sick frequently since he was about 6 months old. We approached his first pediatrician with our concerns when Charlie was about 18 months, and he told us there was nothing wrong and he told us to get counseling to learn how to be better parents. Obviously, we switched to a pediatrician who would listen to us. We actually didn’t find out what was going on for another year or so. September 2002 brought the birth of our daughter, Kate, and she was sick almost immediately. She was hospitalized at 2 weeks old for 10 days for horrible diarrhea no one could explain. At 6 months, after 2 hospitalizations, she was diagnosed at UCLA with what was originally thought to be transient hypogammaglobulanemia of infancy. Our pediatrician immediately suggested testing Charlie as he was sick more often then Kate. By this time, we were already pregnant with Thomas, our third child. Charlie was diagnosed with an Immune Deficiency in September of 2003. He began IVIG on February 2, 2004, he had his second treatment February 9th, and Thomas was born 2 days later. Pretty quickly, I was sure Thomas was also immune deficient; he has similar nonspecific symptoms both Kate and Charlie had. Four months later, Kate started IVIG after daily antibiotics could no longer keep her healthy, and then Thomas was diagnosed 2 months later. He started on IVIG at 11 months in January of 2005. Phew… I can’t believe I even remember any of it… it’s sort of a blur.
David: You are lucky that your children were diagnosed early. According to an IDF survey, diagnosis of this disease takes an average of 9.2 years from onset of symptoms.
Dayna: I do feel as if our family was very lucky. While our first pediatrician did blow us off, I felt confident enough in my gut feeling to change doctors, in part because my husband is a flight paramedic on a helicopter and my mother is a nurse, and they both agreed something was off. If they had not supported my decision, I’m not sure I could have been so confident. Further, and more importantly, we found a pediatric group where every doctor listened to the parents, and many of the doctors trained at UCLA, so they were well connected there and did not hesitate to get our family into this major medical center where some of the best immunologists in the world are. We can feel for those who do not live as close to a major medical center, because now we live in Las Vegas and travel back to Los Angeles for the kids’ IVIG and for them to see their immunologist. Being so close and connected to a major medical center with a strong immunological department was a huge part of us getting diagnosed early. We are grateful to the Jeffrey Modell Foundation for sponsoring centers of excellence across the country like the one in which our children were diagnosed.
David: What was going through your mind as each one was diagnosed?
Dayna: I think each diagnosis actually brought about different feelings. The first to be diagnosed was Kate, and at that point, I was so scared that something was horribly wrong with her that while her diagnosis was overwhelming, it was also somewhat of a relief to have answers and know that IVIG was available. When Charlie was diagnosed, my response was more fear-oriented. He was far sicker then Kate had been, and I was pregnant with child number three, Thomas, so I couldn’t help but wonder what would happen with the baby as well. Finally, when Thomas was diagnosed, my husband and I cried together, and allowed ourselves a “24-hour mourning period.” During this period we could do anything we wanted, but after, we had to pick ourselves up and move on (I spent most of mine throwing up). I think by the time Thomas was diagnosed, I was realistic enough to know what kind of impact it would have on the family. In one 18 month period, among the 3 kids we had 120 sick visits to the pediatrician, so I knew that the diagnosis would have both a financial and time impact on our family. Since Charlie and Kate were already on IVIG, I also knew how much life could improve as well. Now, as we’ve hit a place where all three kids are on IVIG and we’re sort of settled into this life, I’m glad all three of them have it as opposed to just two of them having it. Our general perspective is different than most people. We don’t know any different, we don’t have a healthy child to compare them to.
David: What is your overall philosophy when it comes to managing PI with your children?
Dayna: My husband and I have a saying with regard to this illness, that we can either teach them to succumb to it, or overcome it. We choose to teach them to overcome. We’d rather teach them how to live with this disease than how to die with it. We also try to keep it in perspective both for ourselves and the kids — there are many, many things that are much worse than what our family deals with. I also think it’s important to set a goal for managing this disease, and for us, our primary goal is preventing long-term damage in the kids’ organs and bodies. So, we approach infections with that goal in mind.
David: How do you keep from spoiling them or allowing them to use their PI as an excuse to get out of helping out around the house?
Dayna: Perhaps because all the children in the house have a PI it makes it a little easier. Being sick is not an excuse in our house. While we get that being sick makes things more difficult, we also realize that at some point in time these kids are going to be adults, in the working world, and they’ll need to be able to support themselves and be productive members of society. Some of the basics in our house are that if you’re well enough to play with a toy you’re well enough to put it away. We don’t run to the kid the minute they get hurt or complain. We need them to learn to discern between acceptable levels of discomfort, and the kind of pain you need Mom and Dad to help you address. Therefore, when they fall down, we wait for them to pick themselves up and then we comfort them.
We also try as hard as possible to not make excuses for them. We know some infections make life much more difficult than others. Sinus infections, for instance, tend to bring about difficult behavior in our house. While we’re likely to know why they are having a difficult time following rules, we nonetheless don’t excuse the behavior. Finally, I do have an added advantage, my best friend has an immune deficient child, and she warned me early on that even when kids are sick, they need the consistency of knowing what the rules are and what’s acceptable. She warned me that with a chronically ill child, allowing them to not play by the rules when they were sick would mean half the time, no rules would apply.
David: You have a great relationship with your husband Brian. You two really work as a team to manage the kids’ disease. You talk about staying up until“Oh my gosh-thirty”in order to discuss treatment plans, insurance, an issue at school, or any number of issues. How has your relationship changed because of this disease?
Dayna: The relationship between my husband and me has evolved over time with the stress of this disease. It wasn’t always easy; we initially had a lot of disagreements on how to handle medical situations. However, a lot of work on communication and the IDF conference has really helped. We believe the best thing we could do for our children is to keep our marriage together. For that reason, we make it a point to go out for a date night every week, often to Jimmy Buffet’s Margaritaville here in Las Vegas for some relaxing music and reconnection time once a week, and we meet for lunch just the two of us once a week as well. In addition, we’ve come to realize and accept each other’s weaknesses, and we’ve begun compensating for them, without judgment. He’d rather be the driver than have to sit in that little room for hours on end with one of the kids, so I do that. On the other hand, I can’t stand to give daily meds, so he does it.
David: You are very thoughtful and creative when it comes to the day-to-day parenting of three children with a chronic disease. One of the things you did when Charlie was going to get his first infusion of IVIG, was to create an IVIG infusion book. Tell me about how you and Charlie came to write this book and what the benefits of it were for him and you.
Dayna: When Charlie was set to start IVIG, I went looking for a book to read to him about the experience, like I had done when he became a big brother, or was potty training. The books I found were about being in a hospital, which didn’t really apply since he was going to be in an outpatient clinic setting. There were no books on infusions for kids. So, I decided to write my own with Charlie. I knew reading about it, remembering what he was scared of, would limit the anxiety when he returned for his next dose. When we went to the next IVIG infusion, we allowed Charlie to take pictures, with our help, of anything he wanted to. We also paid particular attention to what we thought he was afraid of--for him it was the blood pressure machine and the needle in his skin--so we took pictures of these things. That night we came home and Charlie, then 3 years, 3 months, reenacted the entire day for his Dad with the toy medical cart we had bought for him the week before in preparation. I was amazed at what he remembered and his views on what had happened. So, I got right to work narrating a book with him. I showed him the pictures and he told me about the image, and I tried as much as possible to write on his age level. I decorated it and had it laminated for him. We then read the book multiple times over the next week; he brought it to school, and to his pediatrician, and then brought it to his next IVIG infusion, and would predict what would come next. He still cried when they put the needle in, but he had some basic knowledge of what was coming next so the fear of the unknown was gone.
When Kate started IVIG, we read her Charlie’s book multiple times, and now that she’s three we’ll write a book for her as well. Thomas was not even a year when he started, but he’ll get a book at three. Our general plan is to rewrite the book every two or three years as it no longer becomes age appropriate for them. The book has become an interesting conversation piece; he’s brought it each year to school, he often still brings it with him to the IVIG infusion, he’s shared it with other children, including my best friend’s seven-year-old daughter when she started IVIG. He loaned it to her to take with her to her first infusion, and she predicted what would come next, and I watched as she had a level of control via the book and her base knowledge. That day, she took pictures and has created her own IgG book now! I hadn’t thought of it as a benefit for others as well, but I can see now how much it helps siblings, teachers, grandparents and friends to understand what the kids go through. One of our pediatricians loved it so much she wrote about it in Women’s Day Magazine.
David: I consider you an expert when it comes to raising kids with PI. You have scoured web sites, spent hours reviewing medical articles and networked with patients, nurses, physicians and other parents, read package inserts and reviewed all of the available patient education materials. Are there any areas where you would like to see more information available to parents of children with PI?
Dayna: I think the main area I’d love to see more information on is dealing with the emotional impact of this disease on children as they grow up. Additionally, more of a focus on the family dynamics and how they are impacted. For instance, I think it would be beneficial for many families to see information on how to deal with sibling relationships when one child is chronically ill; while this does not impact my family, I’ve watched other families struggle when one child is ill and the others are not.