Friday, December 12, 2008

Some More Lessons We Learned

    Thank you for your support of AJ's dads question on the Obama site for the support of childhood cancer. His question ranked #35 out of over 10,000 questions and a million votes cast! ( you can read them here.) The 1st place question (and about 15% of the top 100 questions) was about the critical need to legalize marijuana. I guess it's all about priorities.
    Actually, based on the absurd logic of current childhood cancer funding, I'm convinced of a few people who have plenty of access to the substance.

    While Tyler was in the hospital, he received a drug that was a chemical version of marijuana. I told the doctors I was going to decorate his hospital room with some incense, Jimi Hendrix posters, and Jim Morrison tapes. They didn't think it was very funny. But the nurses did.

    And now the best news...Tyler did great with his scans. It will be a few days to get the official results, but all signs continue to point in the right direction. His recovery has been a true miracle. In two weeks we will be back for two more days of testing. That will mark 6 months since remission began, which is a major milestone worth celebrating.

    The reason for all the testing is that cancer, especially the blood cancers, are very difficult to test. There are 5 possible results on each of the tests: Clean, Stable, Improved, Disease Progression/Relapse, or Inconclusive. 12 consecutive months of "Clean" results is considered cured. We are at month 6, and doing great!

    Some Lessons...During Tyler's treatments we learned the importance of meeting with other parents and sharing information. The doctors have a lot of knowledge, but due to patient loads and insurance requirements, they are often confined by systems created to treat a statistical model. Children are unique, and often deviate from these statistical models. This is where the parents come in.
    Here are a couple of things we learned...

    Palfermin is showing great results in preventing mouth sores. It is still in adult trials, so your doctor will likely not mention it. You will need to ask for a shadow or compassionate trial.

    To prevent neuropathy (nerve damage in the hands and feet), try wrapping bags of ice around your hands and feet during chemo treatments. The theory is that your extremities are dead-ends, so excess chemo builds up there and causes damage. The cold slows down circulation, allowing less chemo in those locations.

    And some other thoughts....

  • Stay positive. Always. You will get tired of hearing it, but you can not hear it enough.

  • Keep seeking knowledge. Keep informed. Leave no stone unturned.

  • Eat healthy. But no fresh fruits or vegetables. They can make you sick while you are immune-compromised.

  • It’s OK not to be OK. Don't feel guilty about it.

  • Tell your doctor everything. Everything. And make sure they are listening and understand.

  • Ask your doctor a lot of questions. Carry a note pad and write down every question that enters your mind. Do not allow the doctor to leave until you fully understand to the answer.

  • Ask about different drugs. There are a lot of options. Ask the other patients what drugs work for them. We heard about another nausea drug from someone from the Cleveland Clinic. It took effort to convince our doc's to try it, but we succeeded.

  • Don’t over do it. You will be tempted, but don't even try. It isn’t worth it.

  • Talk with the hospital about the financial aspects of all the treatments, they maybe able to write some of it off and help you get through this.

  • If you think something is wrong it probably is. Always communicate how you are feeling. Never assume everyone knows.

  • Get hand sanitizer, carry it with you everywhere. Make everyone around you do the same.

  • Use paper towels to dry your hands. It is much more sanitary

  • Get cottonelle wipes. You will bleed for no reason, and this can save your behind.

  • When your white cell counts are down, stay away from people. They may say they are OK, don’t let them visit. Extra trips to the hospital are no fun.

  • Be very careful when your platelets are low, you WILL bruise EASY! Always let your doctor know when this is happening.

  • Get out of that bed and walk the hospital. Sounds pretty boring, but it's better than laying in bed for 15 days straight watching Seinfeld re-runs. There will be plenty of required isolation days. Move about every time you can.

  • Don't be afraid of ports. They are much better than getting new IV's every few days. It is an easy surgery

  • Take donuts to the hospital staff once in a while. They have a tough job. Courtesy can go a long way.

  • When they tell you that you need a blood transfusion, don’t panic. It will be OK.

  • It's OK to be mad. It's OK to vent. It's OK to cry. You will be hammered with the news so fast, it will make your head spin.

  • Beating cancer is not a sprint, it is a marathon. Pace your self, taking one day at a time. There is a finish line, and you will get there.

  • Remember: Pain is your body telling you that you are still alive and fighting.

  • God helps.

1 comment:

Stuart said...

Hello! I am Stuart, a healthy 31yr-old in Atlanta who now has high-grade Lymphoma. I am to find out tomorrow if I have the Burkitt's variant, or just a high-grade B-cell flavor. I have been told both about R-CHOP and also R-HYPER-CVAD and don't know which way to go. This blog is very inspirational, as well as informative. I pray that the Lord will continue his good work in Tyler and strengthen his family as they walk through this valley. May He bless and keep every last single one of you.