This week's sickle cell conquerors are 15 year old Peyton and his mom, Jade! We thought it would be beneficial to gain a caregiver's perspective.
*picture of Peyton and Nicolas Cage*
1.)How old was Peyton when you found out he had sickle cell? I received a letter via mail when my son was about 2 weeks old. I then received a follow up call verifying that I received the letter and was told to find a doctor asap.
2.) How has he been able to cope with school and sickle cell? School is tricky. For years, he had no problems. As the disease becomes more complicated, school is problematic. Typically, a criris begins in August when school starts. He spends a few weeks in the hospital and then spends weeks playing catch up with classes. This will be the 4th year that he has to have teachers visit him at home. I pray that he will be strong enough to return to school full time.
3.) How has sickle cell affected his childhood? He is a typical happy go lucky kid. However, we have to restrict outdoor activities. We also miss lots of events because of sudden illnesses.
4.) How do you balance caring for him, work, motherhood, or etc? With his health situation constantly fluctuating, I find working is all but impossible. I can't list the jobs I've lost due to sudden hospitalizations. Employers are not very understanding. I've a college degree collecting dust. I've 2 younger children and I make a conscience effort to spend individual time with them both. They deserve the same time & attention that my ill child receives. I try to include them as much as possible in everything so that we can maximize our family time but I make sure each child is made to feel special.
5.) Has sickle cell limited any areas of your lives? SCA limits everything. It can cancel a vacation. It can make us miss weddings. It nixes long days at the beach or outdoor sport events. We avoid rain, heat and cold. We must actively try not to become hermits.
6.) Does he have regular pain, related to sickle cell? How does he cope? I think my son has been in pain every day of his life. He is either in crisis, recovering from the pain of one or dealing with a complication. Coping is hard. Though I take him to a counselor to vent, though he takes anti-anxiety meds when the pain is really bad, distraction is his greatest tool. If he can zone out while in pain, it's the only relief that he can find.
7.) How often is he in a crisis? How does it affect your lives and routines? Can you describe a crisis us? He has 3-4 major crisis per year. These usually require a few weeks in tge hospital. He has minor attacks very often. So often that I cannot guess how many. In a major crisis, he cannot walk and we are confined to our home. He also requires weekly doctor visits and phys therapy a few days a week. Our schedule revolves around his schedule. We are very limited.
8.) What is his typical day like living with sickle cell? Typical day? Pain, meds, repeat. At some point sprinkle hygiene and laughter. More pain. More meds.
9.) What advice would you give to those with sickle cell and their caregivers or those who want to learn more? Become an expert in your child. Learn about how the disease works, alternative treatment methods, network with other parents, become friendly with medical providers, research meds and understand how they work before giving them, stay in tune with the child (learn signs of crisis), establish an extended support system, brush up on homework helping skills, love without measure, trust your intuition, give thanks for every single moment.