My son Michael was 7 when he came home from school one day saying his right upper leg hurt, he told me he tripped on the playground. The pain was not bad so I didn’t take him to the doctor, but over the next few days the pain kept getting worse, so much that he was crying and not wanting to walk on it.
I took him to an Orthopedic doctor that could x-ray his leg, he explained that he had broken his femur, which is a very strong bone that doesn’t break easily. He said it made no sense how it broke, but he cast it and sent us home. After three weeks Michael was screaming in pain when he woke up one day, so I took him back to the doctor, they cut the cast off and took another x-ray of the femur. This time when he showed us the picture, the femur looked like Swiss cheese, he said that he wasn’t sure what was going on but wanted the best doctors to check it out so he suggested we go to a cancer hospital to get their opinion.
Maybe I was just stupid but he had said he thought it was a blood infection in the bone, and I really wasn’t thinking it could be anything else. I made the appointment, we went in, had lab work and then went back the next day (I did this without my husband, my choice because he was on a new job and I didn’t think anything was really wrong). I remember sitting across the Oncologist desk with Michael by my side when he opened the file and told me my son had A.L.L. Leukemia. I couldn’t say a word, I just stared at him and he said “do you realize that it’s cancer”. I started to cry and shake uncontrollably. I asked to use the phone and called my husband to come as quickly as he could get there.
All I could think of was cancer is a death sentence and my little boy is sitting there hearing this too. He was quiet but when we went home he asked to get on the computer and look up Leukemia and see how he could beat this and get better. That was when I knew I had to pull it together and read everything I could and PRAY, PRAY, PRAY!
After 21 BAD days of treatment because of inferior care and a doctor that was very ugly and demoralizing to my child, Michael become paralyzed from the neck down, was very jaundiced and so very sick that when I took him to Texas Children’s for treatment they couldn’t even give him any chemo for fear it would kill him.
I knew in my heart that the original hospital was not giving my son the best care and did not like the way the doctor treated my son, there was that little voice inside of me saying “SOMETHING IS WRONG”. Please listen when this voice goes off in your head, the doctors and hospital work for you because you pay them. If you or your loved one is not getting the best care you can tell them, I WANT ANOTHER NURSE OR DOCTOR, do not let anyone who is not working with you or treating you with care be around you. You have the right to fire them from your care. We went through many years of hospital stays, ICU and treatment because Michael also needed a Bone Marrow transplant. Yes we did have many amazing nurses during the many, many years we went through during this journey. PLEASE when you have a great nurse let them know how much you appreciate them, I still ALWAYS DO. There were a few nurses that were not good or nice and when that happened I went to the nurse supervisor and let them know that the nurse in question would no longer be allowed in my sons room because of the following reasons: let them know what your reasons are. I never had a problem with them replacing the nurse with someone else.
Be an advocate for your child or loved one. That is what I learned from the bad experiences we had in the beginning, I always look for the good in everything. Even when there seems to be nothing but bad I take it as a life lesson to learn from and then make it a positive.
There were many miracles that happened to my son to bring him through all of his life and death situations during this journey, but I will talk about them during another post.
Michael is ALIVE and 25 years old and here because GOD wanted him to live.
I will also talk about how much of an impact it is on the siblings who are going through a life altering situation in this journey. My beautiful daughter Shanna was 10 during this time when we were told to give him last rights and bring in the family. Michael was in a medically induced coma and paralyzed to keep him from moving because he was on a ventilator. He was unrecognizable because of the fluid buildup in his body and it had swollen to twice its size, even his head. They had us bring a picture of him and attached it to his ventilator by his head so that when we looked at him we could see what he looked like before.
Shanna told the nurses that she wanted to see her brother, but they said she was too young to go in. She was determined to go so they called in someone from Child Life to talk to her. They took a picture of Michael and showed it to her and explained how she would see a lot of equipment hooked up to him, she took one look at the picture of him laying in the hospital bed and said, “so what are you waiting for, take me in now”.
She walked in and kept her composure talking to him as if he were awake telling him she loved him, she never cried in front of him until she left the room later.
My daughter is 27 now but is scared from what she went through during all the years of him being near death more than once and having him and I gone all the time, in and out of the hospital, not home with her. We need to remember that the siblings go through a lot watching mom and dad worry, being separated from one or both, being jealous of the attention the sick sibling is getting and feeling guilty about it. There is so much to talk about on this subject that we will talk more about this soon.
Love your family,
and smile 🙂