Sunday, November 23, 2008

Parents - Lessons I Learned

I was recently back at Children's on J-5 to visit Ryan. While there, I met a family who had just been told their son had Burkitt's. I vividly remember all the emotions of those initial days. I truly believe that there is nothing on this earth that will rip through your entire being as facing the mortality of your child, a life you created.

I very much wish that, in those initial days, I had a better understanding on how to fight this battle. It took months to learn many lessons that could have been explained up front. And those lessons were important. Most childhood cancers move too fast, and there is little room for mistakes. The bottom line is that your job is to be your child's #1 advocate. You child's job is to fight the cancer. It is your job to fight everything else, to clear the road for your child. So, for what ever it is worth, here are my lessons learned that I wish I knew from the beginning. Much of this I have already posted, but here it is grouped together.

Second Opinions: 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.

Get a patient advocate. You need help battling the "system", and a sounding board to review options. Ours was a family friend and senior oncologist on the west coast. Retired doctors are also good.

Question Everything: 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 get a new doctor. Regardless, get the answers you need. Once you have the answers, contact other doctors and ask them the same questions.

Talk To Other Parents: 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.

Clinical Trials: 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. If told your child does not qualify for the trial, "shadow" the trial (following the same treatment while not officially part of the trial). We were told that is "against the rules of pediatric oncology", but that is untrue. The hospitals problem with shadowing the trial is financial, not medical.

Statistical Averages: Most hospitals use a very strict "by the book" approach to treating childhood cancer. You will hear a lot of medical justification for this, but the real reason is cost efficiency. Your child will be placed on a protocol. Due to lack of research and lack of funding, childhood cancers do not receive individual treatments. Because there are so many childhood cancers, the various cancers are "bundled" together into similar groups. Then a generic treatment is created for a "statistical average" of these similar cancers. This approach is very cost effective, but ignores the individual differences with your child. 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, and you are the only one who will be there to protect your child.

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. 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. Forgive, forget, and keep moving. Every couple we met handled things differently. One spouse needed to trust the doctors, while the other needed to leave no stone unturned. Remember everyone handles things differently. Holding things together depends upon your ability to accept that fact.

Take care of the other kids. The fact is that your whole 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.

Be involved: 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.

Trust Your Instincts. Follow Your Heart: 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.

Never Give Up: 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. 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.

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.

It is not the doctors fault. A doctor, who has become a close friend, told me that many of the difficulties are due to the medical establishment. The docs are pressured by insurance companies, legal departments, and hospital cost cutting measures. And their patient load is too high. The result is that an individualized observation approach of decision making analysis is replaced by a battlefield triage-like 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.

Do not underestimate the influence of the insurance company: Everyone needs to be paid. We ran into road blocks on treatments that I am convinced were the result of insurance policies. Therefore I stopped fighting the hospital and went after the insurance company. We all realize that no doctor would ever make a bad decision due to insurance. But there are many "grey" areas. There are many experimental procedures. There are many approaches that are outside the main stream. There are many judgement calls on how far to push things. DO NOT allow an insurance company to make those decisions.


AJay Piniewski said...

Kyle, I am sure you won't mind if I cut and paste that post into the Caregiver Group on PAC right?

And if you don't mind, tell me more about "shadowing" a clinical trial. Lori, the co-founder of PAC2, is having a hard time getting into a trail.....relapsed. Sarcoma. And I love her.

Susan Ralston said...

This is great advice for parents, and I agree strongly with everything you said. I would love to use this summary for other parents. Thanks!


Curt McCormick said...

This is outstanding; can I consider it for the CureSearch site (the advice part, I mean, but thanks for the plug).

Parents need all the help they can get in their time of terror...I remember this part from my son's stroke, a different "problem" but your truths are 100% the same! This advice should be dispensed to all parents of children with any life-threatening disease.

thanks and best regards
Curt McCormick