Lesson for today - Miracles happen! Today a year ago William was in the ICU, his belly was extremely swollen (72cm), his testicles were the size of large oranges, he had a bladder that was so damaged by chemo that a catheter had to be inserted. Today a year ago William walked for the first time in weeks. This is a link to his old Blog and the entry Blog from 365 days agoI don't often read the old entries as they make me extremely emotional but, I am glad that I read this one because it gave me some much needed perspective.
William and I are still at Sutter Resort and Spa but, it looks like we may go home tomorrow or on Wednesday. I am happy to report that all of the viral nasal swabs and blood cultures have come back negative, this is great news. Unfortunately I still don't know what caused his fever spikes, I guess it is just one of those weird things that happen to ChemoKids.
I am not sure if any of you read the news in USA Today regarding Exide Technologies in Frisco Texas and the EPA investigation into DSRCT diagnoses.... Long story short, Exide is one of the largest producers of stored energy batteries. The company has more than 631 locations in the US and it is also spread out among 80 countries. The report got me extremely interested and I started doing my down digging and research. This is a link to a map I created on google. Purple thumbtacks indicate the location of a DSRCT patient and the blue markers indicate and Exide Technology location. I am not saying that there there is a definite link but I encourage you to take a look at the map and come to your own conclusions. NOTE - Zoom in on the USA to get a good idea of what I am talking about.DSRCT and Exide Map 
I am happy to report that William's hair is growing so fast and it is so beautiful! His hair is pure white and extremely soft ;) Unfortunately it will all be gone within a few weeks. The chemo that awaits us in LA is extremely strong and hair loss sure to happen.
While doing some research on DSRCT I stumbled across the following "Important Lessons" that a DSRCT dad wrote shortly after his son passed away from this horrible disease. I wanted to share this with you for no reason other than my hope that it may help someone, comfort someone, or answer a question that has been lingering in the mind of a parent (Like me).
Lessons:
1. Always get second or third opinions. Doctors are used to it. They won’t be mad with you.
2. One of your best chances is when the disease is not metastatic or is only locally metastatic. Ask for a very aggressive surgery with wide margins. Couple it with radiotherapy (IMRT/proton/ etc). Maybe an autologous transplant. Radiotherapy later in the treatment increase/prolong neutropenia (low neutrophils) and thrombocytopenia (low platelets). Transplant later may not be a good decision.
3. The treatment has to be holistic. By it I mean using the traditional medicine for sure but coupling it with alternative medicine (attention: when there is no conflict!!), biotech, spirituality and love.
4. Monotherapy doesn’t work most of the time. The disease is so aggressive that a cocktail has to be used continuously. Try to use chemo to activate the death pathways of the tumor cells and use other drugs/herbs/ etc. that block as many survival pathways as possible.
5. Take the initiative. Study. Research. Take the articles to your doctors. Give them ideas. Conduct as much as possible the treatment. The Internet is an amazing tool. By studying you will be able to know more about the disease that any doctor since they don’t treat only DSRCT patients and see only a very few DSRCT patients in their lives.
6. Choose a doctor that has experience with the disease. Choose a doctor that is not afraid of testing new protocols, a doctor that never gives up. Choose a doctor who is not afraid of what their peers will say about his recommendation/ treatment.
7. Listen to everything. Talk to everybody. Read whatever is available. Most of the time a good advice comes from the least expected place/person.
8. There is no defeat in advance. Every case is different. Even among all of you. Statistics are not useful at all. Don’t listen to them.
9. Believe all the time. Get the strength from inside you. Make plans for the future. Look how placebos work! I personally believe that you can cure/treat yourself as well as any doctor/drug. Talk to your body!
10. Don’t live the disease. Run away from it. Enjoy life. Enjoy every day and every moment.
Keep on Keepin' on.
Live Strong in God's miracles - They happen every day!