On April 19th, 2022, Ezekiel was diagnosed with PH+ALL at just 6 years old. This is a rare subtype of the most common childhood cancer, acute lymphoblastic leukemia. It is a cancer of a type of white blood cell known as lymphocytes. The most common symptoms of PH+ALL are fatigue, weakness, dizziness, pale skin, frequent infections and bruising easily. This is a fast progressing and aggressive disease. The long-term prognosis is very poor. Children with this type of cancer typically have worse prognosis than those with other subtypes of ALL. Diagnosis of this cancer is usually determined through blood and bone marrow tests. The 5-year survival rate is 57%.

     On April 8th, 2022, Zeke woke up crying due to leg pain which continued for roughly 30 minutes. This continued to happen every morning for 3 consecutive days. I immediately called his pediatrician’s office and spoke to a nurse on April 11th, 2022. I was told it was probably just growing pains. The very next day he developed a fever and continued leg pain. By April 15th, 2022, he then began experiencing belly pain. I again called the doctor and we were asked to bring him in on April 16th, 2022. The doctor thought he could possibly have Lyme disease so an x-ray and blood work were ordered. That evening the doctor called and asked us to bring Zeke to the emergency room because the tests showed he had an enlarged liver and spleen. They also said that the blood work they had done did not look good.
After more testing was done the doctors stated they thought our son had leukemia. On Easter day we met with an oncologist. A bone marrow test was done and on April 19th, 2022, the results came back and they were not good. The doctors told us our son had ALL type B but by April 27th, 2022, we learned Zeke was in fact PH+. This meant that our son would have to take a more aggressive treatment. We were terrified and the word cancer kept playing over and over in my head. Knowing there was nothing I could do to make this go away was like being punched in the gut repeatedly. I kept asking myself why this was happening to our son.

     Zeke began treatments immediately and his port was surgically placed. He received chemotherapy in pill form and liquid through his port more times than I can count. He also had 7 LP’s (lumbar punctures) and 3 bone marrow aspirations. As of right now we have been very lucky that our son has not suffered any major side effects from his treatments but we know this can change at any time. That is the scariest part of this ugly disease, you just never know what to expect. Cancer does what it wants regardless of what chaos it creates. The harder the cancer tries to take over, the harder our son fights. He has been such a brave warrior since his fight began and remains determined.

     Approximately 10,470 children in the Unites States under the age of 15 will be diagnosed with cancer in 2022. It is estimated that 1,050 deaths from cancer will occur in the United States this year in children under 15 years old. An estimated 550 deaths from cancer will occur in teens age 15-19 years old. After accidents, cancer remains the second leading cause of death in children under 15. Every year, an estimated 400,000 new cases of cancer affect children worldwide. That is over 1,000 new children affected every day. Childhood cancer survivors are twice as likely to suffer chronic health conditions. 1 out of 6 children with cancer in America do not survive 5 years. Sadly, despite advances in medicine, some types of cancer remain incurable.

     Cancer has completely torn our world apart. There is not a day that goes by that it does not affect our family. Zeke has 3 brothers who have not been able to see him very often since his diagnosis and that will continue at least until October of 2022 if everything goes well. My husband has had to miss work so he can stay home with our other children. Cancer keeps families apart and that is the reality of this horrific disease. This is one reason I am so passionate about speaking out about childhood cancer. There are very few options when it comes to treatments for our children. The options we do have often cause long term effects on them. More research and testing are crucial to be able to do more for children fighting for their lives. This cannot be done without seeing the mere 4% federal funding rise to 8%.
   
     The federal government is allocating a measly 4% for federal funding for childhood cancer research. This amount is hardly enough to give children battling cancer a fighting chance. By signing this petition, you will help facilitate lobbying and the advance of a healthcare policy that designate a higher percentage of resources for childhood cancer research. With increased funding, a vaccine could potentially be found that would decrease the amount of suffering these children go through daily. We need 12 million signatures to take the next step in this process. Please sign and share this petition and stand with us so that children fighting cancer can be heard.

MONSON, MASSACHUSETTS