Thursday, May 8, 2008

My Child Has Cancer ...

"My child has cancer!" There are few words more devastating that a parent can hear. When Tyler was first diagnosed with cancer we were completely overwhelmed. Those first days and weeks are still a daze. Since then, either through this blog or word of mouth, many have contacted me to say their child had just been diagnosed with cancer.

For whatever it is worth, here are some of the words I have passed on to others. These are just random thoughts in no particular order.

  1. Question, question, question. Never stop asking questions. Ask them several times to make sure you understand the answer. You may feel like your doctor is in such a hurry you need a baseball bat to keep him in the room to finish your questions. If so, go get a bat. Or a new doctor. Regardless, get the answers you need. Once you have the answers, contact other doctors and ask them the same questions.
  2. ALWAYS get a second opinion. And a third and fourth until you are convinced you have the information. We were told that Tyler was critical and needed to start chemo immediately, and that "every reputable hospital would follow this exact protocol". We found that every hospital we contacted would have treated him differently than Children's (although they were all in close agreement with each other).
  3. Talk to everybody. Find others with the same cancer. Understand every case is different, but you can still learn a lot from their experiences. Chase people down on web discussion boards and blogs. Talk to other families in the hospital. This helped with changing some of Tyler pain and nausea meds.
  4. Pain drugs are your friend. Chemo pain is very hard to reduce once it begins. Be very proactive with the pain meds.
  5. Get into a clinical trial. A recent study done by Children's Hospital of Philadelphia showed significantly better cure rates for those in clinical trials. CureSearch in probably the best resource to find clinical trials.
  6. Nurses are your friends. It takes a very unique person to choose pediatric oncology as a profession. The relationships last longer, become stronger, are full of extreme joy and sorrow. There is a reason they made that choice. Make them your friend.
  7. Take care of you. This is hard to do and sounds selfish (it did to me when I was told). But it is essential. Tell your friends what you need. They really want to help, they just need to know how. Lean on them; they are there for you.
  8. Take care of your relationships, and understand that others handle things differently. They say marriages are made in heaven, but so are thunder and lighting. Tensions build. Forgive, forget, and keep moving. You are both going to the same point, but often from different directions. Kathy immediately went into a deep faith and confidence that all would work out. I went into an aggressive "leave no stone unturned" approach. There is no right or wrong. Kathy is "doing" through a strong quiet faith. I have "trust" that God expects us to use the abilities, resources, and determination He has given us. Same destination, different approaches. Someone told me crisis will either tear a family apart or bring it together. But maybe it actually does both. And maybe the end result depends upon our ability to accept that fact.
  9. Take care of the other kids. It is accurate to say "our family has cancer". It affects every member of our family (and many outside the family). Do not ignore this. Do not allow them to be "lost" in the shuffle. They are worried, scared and hurting. They need you.
  10. Be involved in everything about your child's treatment. No system is fail safe. That is not criticism, it is reality. Know everything that needs to go in your child's body, and when and why. Do not be afraid to question procedures and medicines.
  11. Trust your instincts. Over and over I have seen this to be the right course of action. Remember: You know your child better than any health care professional. If a treatment does not sound right, demand more information. Once you have all the information, always proceed in the direction of your heart.
  12. Fight to win. Survival rates on all cancers reduce dramatically in a relapse. Assume you have only one chance to kill this thing. This may require battles with insurance and doctors who use a cost/risk analysis. A protocol survival rate of 80% is often considered good enough. You may be told further treatments are to risky, and "saved" for those who relapse. But often the issue is not risk, it is cost. Why spend the money on 100% when you can wait and only spend it on the 20% who relapse? I say "Why not?" Do not take this to the next game. Finish it now.
  13. Understand the protocol. Most hospitals now function exclusively on protocol rather than individual care. Most childhood cancers are rare, and therefore cancers are pooled together in group protocols that treat a "statistical average". You need to know how closely your child matches that "average". Protocol medicine is very good at taking care of the similarities in those cancers, but ignores the differences. Your child is an individual. A "by the book" approach that ignores the deviations can be very dangerous.
  14. Get with other parents of kids with cancer. Trust me, it helps. Actually, I do not think I have spoken much to these parents about cancer. It is weird, but there is something unique about sitting with a bunch of people that know what you are going through. Even if all you do is have a beer and talk sports, there is something there that helps.
  15. Know the hierarchy. The first advice a nurse gave us was, "Ignore the short coats, they don't know anything". "Short coats" are med students. Actually they can be helpful, but you do need to know who they are. After students are residents, then fellows, then attendings. There is a firm hierarchy at most hospitals, and staff can be afraid to question their superiors. A recent study concluded that "the military-style hierarchy of the medical establishment, which discourages advocacy by underlings" was the #2 cause of accidental hospital deaths (#1 was medical staff fatigue). This problem is compounded at night, when a resident may be required to awake an attending at home to question the orders. Your concerns may never be relayed. Be absolutely certain your concerns are being heard and addressed.
  16. It is not the doctors fault. As a doctor who has become a friend and advocate told me, many of the difficulties are due to the medical establishment. The docs are pressured and dictated to by insurance companies, legal departments, and cost cutting hospital administrators. And their patient load is too high. The result is that the individual observation approach of decision making analysis is replaced by the battlefield triage approach of protocol medicine. Individual attention is up to you, and you will need to go around your doctor to get it. Do not worry about offending or upsetting them. The good docs (and most are) will understand and try to assist you where they can. Many docs are just as frustrated with the system as the families.
  17. Get a patient advocate. You need help battling the "system", and a sounding board to review options. They need to be some one you can trust, has medical knowledge, and can not be influenced by your hospital. Ours is a family friend and senior oncologist on the west coast. Retired doctors are also good. For 16 years I sold and built homes for a company with an outstanding reputation, yet people still hired an independant inspector as a second set of eyes. Why would we do less when it comes to the life of our child?


Bob P said...

as is so typical, you nailed it all. Short coats are to be teased and taught by us. Nights......AJ was off the "required" MTX level by 0.01 and they said no you cant leave. I said what if I do leave, I have charted ANC levels and WBCs and MTX levels for 4 months, I KNOW what the next result will be. Sure, you can leave but its "unadvisable" or whatever. So then guilt comes up and you stay. BUT BE STRONG. YOU know your kid. Dont worry about the late night docs, hang with the nurses instead, they make it happen.

Kyle your post is Appendix 1 to the book buddy.....stay at it....Hang tough Tyler

Anonymous said...

Incredible advice...I pray I never need it.

Keep up the good fight Tyler.

Debby Belke

Anonymous said...

Amazing. So Amazing.

You hit the nail on the head. So very true.

I so deeply wish I had learned this a year ago. Things may have turned out differently.

Please continue to spread the word.

Anonymous said...

Thank you for your insight. We all need to share our experiences more often.

I proudly signed AJ's petition.

Anonymous said...

Very good information. This should be in a book.

We follow youor blog and keep Tyler in our prayers each day.

deyerles said...


I am so proud how through Tyler's illness you have found a way to benefit others. So many people can be helped from Tyler's journey. Never give up looking for the answer.

I am so sorry Tyler has to suffered but Thank God he has you by his side.

Fight to Win,

Anonymous said...

ATTENTION: I signed up for that free bone marrow kit. I thought you guys had it posted as well. They are giving 10,000 kits away free.
If it is not posted on Tylers website you can get to it on Sijins. Or repost it or post it, Kyle.
This can help save lives and I pray I can help someone someday.
Connie Lukacs

dina b. said...

Amen, my friend -- You have covered many, many bases -- very well spoken -- I am in awe of how well you continue to convey important facts and info as well as the emotional/relationship side of it -- Thank you for sharing your profound insight with us!

Mom said...


Great information for all who are afflicted. You have given so much to so many others. You and Tyler have turned a negative situation into such a positive blessing to so many - now and in the future.

It certainly makes me understand how much God is involved with our precious Tyler. He and his illness is being used for greatness.



Anonymous said...

hi, new to the site, thanks.

Magnolia Girl Stuck in the Middle of America said...

Thanks, we are 6 months into treatment for ALL for my 2 year old and have only figured out about half of that stuff. They should hand out your list to parents of newly diagnosed children!
It is so important to stay on top of everything. I found an online discussion board to talk with other parents and it has be a lifesaver. I got a copy of the protocol and haven't stopped advocating for my son since. We did switch hospitals and found a new oncologist that was more sympathetic and attentive to our sons needs.