John (4 years old): Folic Acid Deficiency
My son, John, has folic acid deficiency anemia. Today, he was feeling weak, tired, and light headed. He needed to lay in bed the whole day, so he could rest. He’s not happy with this situation, because he is not able to play with the other kids. He takes folic acid supplements everyday to bring his folic acid level up. Folic acid can be ineffective and increase the risk of cancers, so I follow exactly what the doctor suggests. The hematologist visited my son today. The hematologist took blood samples from my son. The blood analysis shows that his folic acid level was low. The hematologist helps monitor his folic acid level and helps to maintain a normal level. This afternoon, the dietitian talked to me and my husband about the food John should be eating. His diet needs to change to increase his folate level. The dietitian told us the food he should be eating are leafy vegetables and citrus fruits. It’s hard for John to eat vegetables, but he tries to eat them to feel better. I also give antibiotics to my son everyday as prescribed, to fight bacterial infections. I try to be careful not to overuse the antibiotics, because it can have side effects, like creating more bacteria that’s more challenging to kill. I hope none of these side effects happen to my son. In the near future, I hope my son would be better and live like a normal kid.
Charles (15 years old): Bone Marrow Transplant
Today was a very shocking day. My son, Charles, will have a bone marrow transplant. Lately, he’s been experiencing fevers, night sweats, weakness, loss of appetite, etc. My wife and I went to a professional and got him tested. We found out that he had leukemia. It was a very intense news. Charles wasn’t happy, because he’s hurt physically and mentally. He’s sad that he can’t play sports like he used to. Hopefully, the bone marrow transplant will treat my son. I am nervous for him, because of the risks of a bone marrow transplant. He may get anemia, cataracts, damage to the kidneys, clotting in the small veins, etc. Although, this may replace his unhealthy bone marrow. I hope all the diseased cells are destroyed from the chemotherapy and replaced after the bone marrow transplant. Earlier, the transplant oncologist talked to my wife and I about his medical records, treatment options, and recommendations. He suggested that the bone marrow transplant can treat my son, so we decided to do it. The bone marrow transplant nurse came in today to prepare my son. I asked many questions about my son’s condition and they explained it very well. The nurse also told us about the treatment and processes. The nurse also helps with the medication needed for my son. The transplant oncologist prepared the donor, by physical examination and blood tests. He also did this to my son. Then, the conditioning started. This was a hard time for everyone, because Charles had to get chemotherapy to destroy the unhealthy bone marrow. My son felt side effects, like nausea, fatigue, and skin changes. After the conditioning is complete, the transplant oncologist harvested bone marrow from the donor. Then, they started the transplant, by infusing the cells into his body. Everyone in the family waited and hoped this would work and that we wouldn’t have to worry about the side effects: chest pain, chills, fever, headaches, nausea, etc. After a few hours, the transplant was over and the bone marrow transplant nurse helped with his recovery. My son will soon be healthy and full of energy.
Anna (7 years old): Chronic Transfusion Therapy
Anna, my daughter, has complications with sickle cell disease. The pediatric hematologist had to give her chronic transfusion therapy to treat her strokes. This morning, I noticed that she was experiencing chest pain, strokes, and difficulty breathing. My husband and I brought her to the hospital. We found out that she had sickle cell disease. Later in the day, she had a stroke. We were very worried about her, so we went to a pediatric hematologist and asked about her condition. The pediatric hematologist did a test on her called hemoglobin electrophoresis. The results came out positive for sickle cell disease. The hematologist explained that her red blood cells are sickle shaped. The pediatric hematologist planned a chronic transfusion therapy, because of the results of the test and the symptoms she was having. My daughter needs regular blood transfusion: every 4-6 weeks. Anna was unhappy to hear that she needs to be treated, because she needs to miss school and not be able to play with her friends. She feels very homesick. She just got her first chronic transfusion. I hope the chronic transfusion therapy won’t cause problems, like iron overload, infections, red blood cells antibodies, etc. On the other side, it can prevent strokes, severe anemia, heart failure, etc. Anna did notice changes. She feels better and the symptoms have gone down. I hope this treatment continues to work.
Patient Diaries
Here are real people with real Sickle Cell Disease and their life stories.
Patient Diaries
References
Emma's rapunzel cake. (2011, April 11). Retrieved from http://www.cornerhouseblog.com/2011/04/emmas-rapunzel-cake.html
Inquest hears of tragic towcester boy killed by collapsing fireplace. (2008, December 16). Retrieved from http://www.aboutmyarea.co.uk/northamptonshire/towcester/nn12/news/local-news/120385-inquest-hears-of-tragic-towcester-boy-killed-by-collapsing-fireplace
Yale heights. (2010, December 3). Retrieved from http://yaleheights.blogspot.com/
Sickle Cell Patient Stories - Children's Hospital Los Angeles. (n.d.). YouTube. Retrieved April 28, 2014, from http://youtu.be/skWYKOcptLQ