In the time leading up to Michael’s diagnosis, he was vomiting every morning for over a month. I took him to his pediatrician and a small hospital here in town. They both said it was a stomach bug and gave us medicine and sent us home. After a few days, his vomiting got worse. I ended up taking him to a hospital a hour away. The doctor took Michael back for a CT scan. The doctor said it can only be 2 things that is making him vomit, either a tumor or cvs (cyclic vomiting syndrome). He wanted to rule out the tumor. Unfortunately 15 minutes after the CT scan, the doctors told us Micheal did have a mass in the back of his brain.
From then on everything happened so quickly. We were transferred to a bigger hospital with specialist. He had surgery and his treatment planned. Michael’s treatment was really hard on his body. After surgery, he had to re-learn to eat, drink, sit, stand, move his hands, and walk. It was very difficult for him. With chemotherapy, he spent most of treatment in the hospital because he would get sick due to his anc being low or a zero. He also has had 11 surgeries throughout his treatment. He now eats through a g-tube. Maybe forever but we hope not. He will need therapy for a while and still has lots of appointments to check his health. He also gets sick very easily.
We were three hours away from home so our other son had to stay with his grandma and aunts. We did miss his whole school year of kindergarten and we would only see him a few times a month. If we were lucky, we would spend time together at home.
Michael’s diagnosis has affected our family a lot. We have to be more careful with him and he sometimes will get more attention. I know our other son feels more left out but we try to explain it to him. Life will never be the same. There is always a chance of relapsing or something going wrong. I also just wanna say that there is more behind to what we chose to show others ….living life with a sick child is hard but you really start to appreciate the little things and learn to love a little more.
In October 2015, Leonard started having headaches. They were constant and persistent. Soon after, he began randomly vomiting every two to three days. By November, he began to lose his balance and couldn’t walk straight. A trip to the emergency room (and a CT scan) confirmed what we suspected: Leonard had a brain tumor.
He was admitted to Children’s Hospital of Wisconsin and had an external ventricular drain placed to relieve pressure in his brain. A few days later he underwent a craniotomy to remove the tumor. We received pathology the following week from St. Jude-the tumor was medulloblastoma. Cancer. And our 5 year old would have to endure radiation treatment, chemotherapy, and all the things that come with them. He struggled to eat throughout treatment, and he felt awful for so long that being sick became “normal.” When his nurse would ask him how he felt, he would reply that he felt fine, even if he was holding a vomit bucket as he walked down the hall. It had just become status quo. It was hard to watch and surely much harder for him to endure.
He finished treatment in February 2017 and things are going well. He’s a happy, empathetic kid who loves building with Legos, reading books, playing with his siblings and friends and visiting the library. Leonard is loving and kind and remarkable. We are so blessed to have him still here with us.
Carlos is very smart and has a sense if humor. He loves to watch WWE matches and pretends to wrestle with his little brother. He is not emotional about cancer or its effects, he just deals with things as they come. He has very high standards for himself and he is always thinking positive.
In January of 2015, he was experiencing blurred vision, headaches and vomiting first thing in the morning. He was diagnosed with Medulloblastoma, also known as PNET. He early symptoms are very common for Medulloblastoma. Medulloblastoma occurs in the brain at the base of the skull. Medulloblastoma accounts for 20% of childhood brain tumors. Carlos’ treatment consisted of 3 brain surgeries, radiation and chemotherapy.
Carlos has had to re-learn how to walk, talk, and swallow. He currently has balance issues and can’t play contact sports. He misses playing soccer and lately he has been dealing with fatigue. Our life will never be the same, he is not the same child he was before, and there is always the possibility of the cancer coming back and it’s sometimes hard to manage that.
Parker is quiet and doesn’t like attention. He likes to watch funny videos and he has passion for remote controlled cars. He was diagnosed in March 2013 with Medulloblastoma after his eye was “wandering” and he had been experiencing headaches. His initial treatment consisted of tumor resection and six weeks of daily radiation. Then he received six months of chemotherapy, which were both impatient as well as outpatient. He developed blood clots from port placement and was on blood thinner injections six months. His treatment was completed in December 2013 and he showed NED (no evidence of disease) all of 2014. In January 2015 he relapsed. He was participating in clinical trial in Texas but disease was progressing. He returned home to California at the end of December.
This has been a devastating diagnosis for Parker’s family to face and watch their child battle and endure so much. A silver lining for them has been to see the good in people coming together to help in any way they can. The also are living each day to fullest and not allowing simple challenges to ruin your mood or day.
