As I said in a prior post, we chose St. Jude because Dr. Rhodes said that is where he would take his child in the same situation. Without internet, we had no clue what all going there would mean to our family. I covered many of the things St. Jude does for a patient and their family in prior posts. From covering travel to places to stay to no bills ever for treatment, St. Jude makes the financial aspect much easier for the family.
What we learned over time is that their research is the heart of the hospital. The research is what makes the treatment of the children possible. Over the years, that research has raised the survival rate of childhood cancer tremendously. When Danny Thomas opened the doors to St. Jude, the survival rate for children with cancer was less than 20%. Their research has brought that rate to more than 80%. Their constant research has also brought about treatment protocols that reduce the amount of chemotherapy and radiation for many forms of childhood cancer. The reduction of these toxic treatments means less long-term side effects.
Many traditional hospitals that treat childhood cancer do so only until the patient is in remediation and then don’t necessarily follow them any longer. At St. Jude, the hospital continues to see the patient for 10 years after the end of treatment or until the child reaches the age of 18, whichever is LONGER. They maximize the amount of time that the child is monitored by the hospital. This is for the benefit of the child but also for the benefit of research. Long-term side effects of treatment are common in childhood cancer survivors and the longer the hospital can monitor the child, the more information they have access to.
When a child “graduates” from St. Jude, they are given a binder with all of the information from their cancer and their treatment. This information is then given to the primary care physician of the child. They also give a list of tests that they recommend that the child have every year so that the primary care physician will know exactly what they need to be checking. This takes a huge burden off of the child and/or the family because they do not have to try to remember every little thing to tell the new doctor.
My daughter graduated from St. Jude at the age of 18. She was a patient there for 17 years. We initially traveled there every 3 weeks, then every 6 weeks, then every 3 months, to every 6 months until we finally began to only go once a year. There is quite a relief at the end of each visit to know that all the tests came back good and your child is still in remission.
After graduating from St. Jude, Amber was asked to return as a Life-Study Patient. She was able to go back to the hospital at age 19 and go through a battery of tests. She will be allowed to return every three years for testing, with the two years in between being handled with questionnaires on her health. This program is to follow patients to determine long-term side effects of treatment as adults.
If you would like more information on all things St. Jude, please visit www.stjude.org. It is a wonderful place!