Tuesday, December 18, 2007

A Parents Instincts

I have had many conversations with the parents of cancer patients, and have begun noticing a common theme.

I spoke yesterday to the mother of a 4 year old boy in the room next to Tyler. Their process began when she noticed an odd area in her son's mouth while she was helping him brush his teeth. She felt something was very wrong, but the doctors keep telling her it was nothing to worry about. Although she never imagined it was cancer, she knew it was not right and continued to push the issue with the doctors. Finally the cancer was discovered and he is now going through treatments.

Kylee is 20 years old and will be starting her second round of chemo tomorrow. Kylee's symptoms were misdiagnosed for several weeks, while she was told she had everything from appendicitis to pneumonia to Chromes disease. When she was home over Thanksgiving break, her parents saw how she looked and immediately knew something was seriously wrong. Her parents pushed the doctors harder, and three large tumors the size of a soccer ball were found.

Tyler had stomach pains that lasted a few weeks. Test were run, but came back negative. When Tyler woke up one morning with blood in his urine more tests were run that day, all coming back negative. The conclusion was colitis and a consultation with a GI specialist was scheduled for two weeks in the future. We knew something more was wrong and pushed to get in sooner. I called every contact I knew at Children's, and Kathy finally broke down crying to the scheduling nurse. It was Kathy's crying that got us the meeting in two days, rather than two weeks. Burkitt's Lymphoma begins at stage III and advances quickly through the body, doubling in size every 72 hours. Within weeks it becomes stage IV, doubling in size every 16 hours as it moves into the bone marrow and central nervous system. Once in the central nervous system, the prognosis for survival is very grim. Tyler's cancer was caught at stage IV Burkitt's which had expanded extensively thought the bone marrow, but right before it moved into the central nervous system. I shutter the think of what we would be dealing with had we waited two weeks to discover this aggressive cancer. I believe that Kathy's crying to the schedulers, demanding an immediate appointment, saved Tyler's life.

The fact is that every one of us are very unique creations. When doctors talk about what is "normal", it is a very broad spectrum. They can not know your child like you do. You know better than anyone when something is not "right" for your child. This is not a criticism of the doctors. It is a realization that there is a lot of art in the "science" of medicine. The doctors need all the information we can give them about our children. It is critical that we remain advocates for our children. And we must remain fully informed of everything that is going on in our child's welfare, and an active, and sometime aggressive, participant in their life. Reviewing tests and the exams will never tell a doctor every thing he needs to know. Never, never, never allow yourself to be put off when you know in your heart that something is not right with your child. All too often your instincts will be correct.

7 comments:

Lia DePerro said...

Kyle, you are so right about pressing the doctors to get the answers. I have done that with my father, mother, kids and myself. I have been right everytime I suspected a problem. Instinct guides you to get the answers, and if that doesn't get it, then hysteria usually does, (women are good at this) Don has always said that "I shoot first then ask questions." It's the only way to get what you need. We all continue to pray for Tyler's recovery and for your family. We love you. Lia

beth said...

Amen Kyle!!!

Deyerles said...

Dear Tyler,

Just wanted you to know we are thinking of you and hoping things are going ok.
You are right Kyle, noone knows what is normal or not normal like yourself and your family. Remember Pawpaw's battle.

Love,
Debbie

Beth Hernandez said...

Kyle,
Just wanted you to know that we are following Tyler's progress and are praying for Tyler's recovery and everyone in your family. How right you are about knowing your child and sticking with your instincts. I know you have all the blood you need - I am O negative and would be happy to donate. Keep me in mind.
Beth

Rhonda Hoffman said...
This comment has been removed by the author.
Anonymous said...

So true Kyle. My almost 9-year-old son rarely runs a fever or even acts sick when he is sick. There have been many trips to the doctor when I had to insist(or even lie)to get him in. But most of the time I've been right. Still praying for you and the whole family.

Sara

Grandma Ruthie said...

Hi, Tyler!
We're thrilled to read about your latest test results. You are such a brave young man and are handling all of this with courage. Hang in there and you'll soon have this conquered. We continue to pray for you and your family every day.
Grandma Ruthie