We are feeling so great now about Adelaine only having 6 more months of treatment. It almost feels like we are riding the wave, especially now that her ears are no longer draining and her sinus infection is all taken care of! I have been doing a lot of thinking about how life will be after treatment. There is an excellent book that I have been reading titled, “The Power of Now”, by Eckhart Tollee. This book teaches how we as humans are either focusing on the past, or the future which creates so much guilt, anxiety, and stress that it robs us of the right here, right now. WOW what freedom I have been given! For example, today, right now there are so many beautiful things that God is doing, I’ve just sometimes been too busy “thinking and planning” that I’ve missed SO much beauty because of it. It’s a beautiful day! Today is Field Day at the boys school and Adelaine and I are planning to spend the day with them. I will not enjoy it if I am focused on the past or the future! Bowen is having a breathing treatment here with me in the living room, but, he is not in pain or hurting nor does he have cancer, so right now at this moment things are great! I hope that I will be able to live my life moment by moment focused on the now and let God be the one in control, fully relying on Him. After all I know that He is more than capably and that I can trust him 100%!
That being said our good friend Katerina “Kat” (who happens to be a nurse)and her husband are in the process of adopting a little girl and her sister that they have been fostering for several years. Not long after the girls came to live with them, Sesly was diagnosed with the same type of Leukemia that Adelaine is in treatment for. Just this week Sesly finished her treatment!!!!! Anyway Kat has submitted this letter to the state and has given me permission to post it on Adelaine’s website. It takes at look beyond what we’ve been through with treatments and where we are now to what may be lurking in our future. It shows what all can possibly happen once we make it through the past 2 ½ years of harsh, toxic chemotherapy treatments. If I focus on such things,there is really NO WAY I will be able to enjoy all these precious moments, which all put together equally my life.
Here is Kat’s letter…
March 18, 2008
To Whom It May Concern:
On behalf of Sesly Hernandez, I wish to discuss her diagnosis of Acute Lymphocytic Leukemia (ALL), a life-threatening disease.
Leukemia is a cancer of the marrow and blood. It results from an acquired genetic injury to the DNA of a single cell in the bone marrow. The disease is very rapid with uncontrolled and exaggerated growth of leukemic blasts which fail to function as normal blood cells. This leads to blockage of the production of normal marrow cells leading to deficiency of red cells, platelets and normal white cells.
Most patients as Sesly feel loss of well being. They tire more easily and feel short of breath during physical activity. They have a pale complection from anemia. Signs of bleeding because of low platelet count may be noticed. These include black and blue marks all over the body and pin-head sized, red spots under the skin called petechiae and prolonged bleeding from minor cuts. The leukemic cells can collect on the lining of the brain and spinal cord and lead to headache or vomiting.
Sesly is presently still on chemotherapy. She began chemotherapy on January 18, 2006. The principal goal of treatment is to bring about a remission with no evidence of leukemic blast cells in the blood or marrow.
Over the course of two and half years, Sesly has been on various chemotherapy agents which caused her to have many side-effects. Her short term effects were hair loss, mouth and throat sores that were extremely painful with the inability to eat, nausea and vomiting, diarrhea and constipation, anemia, fatigue and social and emotional concerns, such as anxiety, depression and fear. Many months of hospitalization have lead to extreme anxiousness and a doubt that she will ever be as any other healthy child.
If Sesly reaches remission, there is a great possibility that residual leukemia cells are undetectable by blood or marrow examination and may be still present in the body. Therefore additional intensive post-remission treatment therapy will be used. Medications listed as Doxorubicin, Asparaginase, Vincristine in the spinal canal and vain, Prednisone, Methorexate in the spinal canal and vain, Cytarabine in the spinal canal and 6-mercaptopurine has and is used on Sesly at this time. Many of these agents cause severe side effects and long term effects.
Long term effects of cancer therapy are medical problems that persist for months or years after treatment ends. Examples are infertility, growth problems and treatment-related fatigue. The late effects may not be apparent until years after treatment which include the development of a treatment-related cancer or heart disease. Therefore Sesly will be at a great risk of developing secondary cancer or hear-disease.
The other long-term and late effects for survivors of childhood leukemia may include learning/cognitive effects, physical development and psychological development which may lead to serious complications. All children must be evaluated frequently and on regular basis. Healthy lifestyle practices (not smoking, good nutrition and exercise and regular screening and follow up) may be a positive effect on the occurrence and severity of effects.
Learning disabilities can begin during treatment or become evident months or years after treatment. Mathematics, spatial relationships, problem solving, attention span, reading and spelling, processing of information, planning and organizing, and concentration skills are the areas of learning that may be affected. Problems with fine motor coordination, which may cause poor handwriting, can also develop. Interthecal and intravenous methotrexate can cause damage to the central nervous system.
Cognitive and memory problems are found as being disoriented and forgetful. It is known as “brain chemo”. This term is used by cancer survivors to explain memory loss, poor concentration, reasoning and delayed associative skills.
Sesly may become at risk for fatigue, growth delays, thyroid dysfunction, hearing loss and development of a secondary cancer.
Some studies indicate tat a small number of childhood leukemia survivors were to report changes in mood, feelings or behavior, including depression or posttraumatic stress disorder. Due to prolonged hospitalizations and treatments, and with the combination of loss of biological family, exposure to severe domestic violence and loss of communication in her first years increases the likelihood of PTSD.
The hypothalamus and pituitary gland are located in the brain and control many processes, including growth and reproduction. Children treated for cancer can develop a slowing down or a stop their growth. They must be monitored very closely by a doctor.
Survivors of leukemia treated with modern conventional therapy have a risk for delayed puberty and infertility. Small number is unable to have children.
Hear problems (heat muscle injury, chronic hear failure) may occur months or decades after treatment with anthracyclines. Regular check ups and echocardiograms are necessary.
Dental abnormalities can be a side effect of treatment for leukemia. The most common problems are failure of teeth to develop, arrest root development, microdontia and enamel abnormalities.
Other long term effects
Other important physical outcomes that can have significant impact on quality of life include: osteoporosis, scoliosis, eye problems, lung complications and immunologic complications. Also, since Sesly received many blood transfusions during her treatment, she is at a risk for contracting HIV which can develop into AIDS from infected blood products.
Here is a list of drugs that Sesly has been taking during the course of her treatment and their possible long term and late effects.
Alkylating drugs have been associated with hear murmur such as hear failure and lung problems such as scaring and inflammation, risk of secondary cancers such as acute myelogenous leukemia, premature ovarian failure or premature menopause in girls. It increases the risk for fertility problems.
Anthracyclines been associated with heart damage (i.e., heart muscle injury, chronic heart failure). Hear muscle damage is usually associated with the cumulative dose of anthracyclines, which are used to treat children with ALL. Anthracycline drugs may also increase the risk for developing a secondary cancer, such as myelogenous leukemia or myelodysplastic syndrome.
Corticosteroids have been associated with osteoporosis and cataracts. High doses with are used in children with ALL may be associated with a vascular necrosis of the hip, a condition that may require joint replacement. Dexamethasone and prednisone are the dugs of choice for Sesly.
DNA repair enzyme inhibitors, which are derived from toxins found in certain plants, can cause acute myelogenous leukemia.
Drugs to prevent the cell from dividing by blocking mitosis, such as Vincristine which Sesly receives monthly, has been associated with peripheral neuropathy.
Methotrexate is used to treat leukemia has been associated with osteoporosis and lung damage. Interthecal and intravenous methotraxate, which Sesly uses weekly, can cause cognitive impairment.
Cancer survivors treated with chemotherapy are at risk for developing a secondary malignant neoplasm (SMN) compared to the general population. The risk is greater in young children. Some of these cancers that have been identified are Acute Myelogenous Leukemia and Myelodysplastic Syndromes, Brain tumors, Breast cancer and Osteosarcoma. Unfortunately, Sesly is at risk for developing any of these cancers in the future.
Patients who are in remission continue to be examined by their physicians. After the induction of remission and the completion of post-remission therapy, careful periodic assessment of the patient’s state of health, blood cell counts and, if necessary, marrow is required. Although current therapy of ALL can be curative for most children, there may be long-term consequences of therapy, including effects on growth, psychological development, and other effects. Because of these possible effects, long term follow-up and appropriate continues uses of medical counseling are important.
Some children and many adults, even after intensive treatment, have residual leukemia cells in their marrow. This circumstance is referred to as “refractory leukemia”. Some patients who have had remission of leukemia after therapy have a return of leukemia cells in the marrow and a decrease in normal blood cells. This situation is referred to as “relapse”.
In this case, different approaches, such as drugs not used in the first course of treatment or stem cell transplantation, may be used in an effort to induce remission. In patients who relapse, the duration of the remission, patient age, and the cytogenic findings in the leukemia cells influence the approach to therapy.
If Sesly survives past five years, she will be along term survivor. Long term survivors require life-long health surveillance to make sure they can be properly treated if they develop side effects.
Most childhood cancers are life threatening, the reality of medical complications or declining health cannot be overlooked. No one knows for sure how long Sesly will live. Unfortunately, even with modern scans and treatments, it is often difficult to tell exactly what effect the cancer is having on the body. The terminal phase of this illness can create unimagined challenges and concerns for the child and family.
Children facing end of life have specific needs and concerns. Preparing a child for death is one of the most difficult tasks for a parent and family to face. Not being alone as they near the end and parental support and love will continue afterwards can be most helpful to a dying child. Letting them know the impact that their short life had on others is important to them.
Lastly, I hope that this letter has helped you understand the impact of leukemia on a child and family. Family plays a very important part in the child’s well being. Sesly was healthy at the time of her placement with the Evers family. When she became ill with leukemia, they spent every moment with her and helped her to get to where she is today. If she remained in her previous situation with her biological family, she would not be with us today. Their dedication to her and her treatment has given her two more years to live and hopefully many more to come.
I wanted to post this letter so people realize that looking beyond the rosy cheeks and pigtails, there are MANY reasons why living a life of joy and peace can so easily become stifled by worry and anxiety. Every single day of my life I have to give this to God. As a Christian this should be such an easy thing to do, but as a human it can be so hard. I want everyone to know that I struggle with this so much, but I know that God wants to take this from me. I know He loves me and each one of us more than we are even capable of loving. Today I will give my worries and anxieties to God. I put them at the feet of Jesus. Please pray that our faith will strengthen every single day, and that we will FULLY rely on God and enjoy each blessing He gives us.