My son's name is Elijah. He was diagnosed with a rare form of cancer when he was 2. He is now 12. The form of cancer was Pleuropulmonary Blastoma Type 2 and it was a lung cancer. He had a chronic cough and it was very abnormal so we took him to his Dr and she thought he had pneumonia so she sent us to the hospital for Xrays. The Xray showed a large black mass that covered almost his entire right lung. So they thought possible child emphysema. They sent us to Akron for further scans.
They did a chest CT and sent us home. Dr called the next say to tell us it was a liquid cyst that needed to be removed because it was so large and growing. I was freaking out to put my baby through such a rough surgery (4 hours).
We had no choice to make him better so we did the surgery. The Drs were amazing. They let me go all the way to the operating room with him. I had to wear the boots and the mask and the gloves, hat and even the suit but once he was asleep I had to leave. Hardest thing ever but I wanted to be with him through it all. The surgeon told us he feared laser would not get it because it was so large. However we prayed that God would heal him or shrink it. He feared he would have to cut his chest open.
After 4 long agonizing hours the surgeon came out smiling. He said I don't know how but that mass shrunk and we were able to remove it all with laser and only had to remove 1/3 of his lung. We were so happy.
However 3 days later the pathology came back to determine that mass was a malignant tumor. I couldn't believe what I was hearing. I had to figure out how to get my child through cancer. I feared everyday of losing him. I couldn't get life insurance cause they said it was a pre existing condition. I didn't know how I could afford to bury him if I lost him. He had to go through 9 months of very aggressive chemo. 4 different kinds. He had a total of 5 surgeries before his 4th birthday. He had brain scans, bone scans and chest scans every 3 to 6 months for 5 years. He had 4 blood transfusions and 3 platelet transfusions. He had mouth sores so bad he was on a morphine pump for 3 days. When he would spike a fever it was life threatening so we had to go back to Akron hospital.
Through all of this he remained happy and strong. I was a mess but we made it through. I stand with him today knowing God truly healed him and gave him a second chance at life. He does have some long term side effects like kidney failure that will never truly get better and now he is borderline diabetic but we just take one day at a time thankful God let him live. He is a walking testimony. My very own miracle. I appreciate when people advocate to childhood cancer and soread awareness cause its not rare. It kills hundreds of kids all the time and until it hit my child I didn't understand how tragic this was. So thank you for what your doing so kids like my son have a voice.