“If you have to cry, please go outside, and don’t cry in front of the children. They cannot see you cry”. This is a single principle that pediatric oncology ward parents whisper to the “new parents”. It is the only principle determined by the parents, the rest of the rules are dictated by tumors that invaded the small, defenseless children.
Before Amelka was admitted to the oncology ward she was treated by an orthopedic surgeon and a family doctor. Nobody knew back then that the cancer is growing, moving body parts, wrapping around them and pressing on the nerves. -“Mom, my leg hurts.”- 3.5-year-old Amelka began to complain. She started to limp, so the parents went to the doctor. Orthopedist treated her for flat feet and recommended exercises, which caused the little girl even greater pain. She wore corrective shoes, but the pain only increased. After a short time her tummy grew, and for that she received a half-liter bottle of syrup. Malignant camouflaged itself, the tumor grew, and Amelka drank syrup and practiced flat feet. One day, one of the legs hurt so bad that Amelka stopped walking.
The ultrasound detected a large mass in the abdomen alien. The tumor was the size of 17x10x10 cm, occupied the entire abdominal cavity, and wrapped itself around the spine. When it was discovered, the tumor had filled vertebrae of the spine. Diagnosis: Neuroblastoma, pediatric cancer, stage IV. Luckily there was a spare bed in the ward. Amelka was in such poor condition that she didn’t notice bald children in neighboring beds. She did not see the children fighting for their lives. She did not see their parents, who whispered to the “new parents” that one simply do not cry here. She did not see those tears either.
– Will Amelka get through this? – The mother asked. The doctor dropped her eyes. It turned out that malignant has an ally, a genetic mutation n-MYC+, which helps cancer cells spread through the body. Amelka was not walking, had the worst form of pediatric cancer, and on top of that a mutated gene helped destroy the body and weaken Amelka’s chemotherapy.
An oncology ward purposely has no mirrors, so that the disease does not reflect itself in them. Amelka’s hair was everywhere. – Mommy, my hair’s itching me – said Amelka. With tears in my eyes I cleaned the pillow, and every day would find new strings of Amelka’s hairs. – I cannot do it – I said to my husband when he came with a hair cutting razor. I did not know what to say, when I saw my little girl’s bald head, but the silence was interrupted by a nurse, cheerfully saying, “Amelka, you have such a beautiful earrings. I never noticed them before, because your hair hid them. And these are beautiful!”
The doctor mentioned an antibody GD2 therapy. The tumor can be removed, but the mutant gene will remain, so the disease can return. Recurrence is usually more aggressive than the original disease. – Amelka has a chance to live a normal life. An opportunity for such a life is the antibody GD2 therapy in a clinic abroad. Therapy cannot be carried out in Poland, it is not reimbursed by the National Health Fund, and the cost of treatment reaches up to €150,000 ($187,000). An Italian clinic estimated the treatment at €40,000 ($50,000).
After 13 rounds of chemotherapy the tumor decreased in size and became operable. On May 20, 2014 doctors removed part of the tumor. However, part wrapped around vertebrae of the spine was not removed due to excessive risk of damage to the spinal cord. Doctors hope that chemotherapy will cope with that part of the tumor.
On August 7, 2014 Amelka traveled to Lublin for autograft bone marrow transplant and that’s where she spent her 5th birthday. Prior to the transplant she received a very strong chemotherapy. On November 12th she begins another round of chemo.
Amelka has spent so much time in oncology ward that her mom remembers children who have not returned, she gets to know those that occupy their beds now. She whispers to their parents the same principle she learned on the first day. She also learns of the children who have returned to Poland after the antibody GD2 treatment cancer free and strongly believes that her little Amelka will have that chance as well. If we are able to collect this enormous sum of €40,000, in four months Amelka will be able to begin the treatment.
Let’s help Amelka win her battle with cancer. Together we can accomplish a great thing here, together we can help to heal a little girl. Because children’s can’t fight cancer alone!