22 September, 2013

Longest post ever

Robert's breathing is significantly better.  The docs never came up with a diagnosis more specific than a severe infection, but nonetheless he seems to be getting better.  His lung capacity is still reduced, but he is able to sleep and lie down without the fluid accumulation. However, he is still coughing quite a bit so he will be going back for more tests this week.

This latest trial has served as a reminder that even after chemo ends next year, he will continue to be challenged throughout his life.  I'm not trying to be negative, as we have been truly blessed during the treatment program.  With Robert being in the high risk group for future recurrence, and the end of his treatment less than a year away, I've been thinking about it alot.  There are quite a few misconceptions regarding cancer.  I address the term "remission" in a very early post, so I wont beat that horse again.  Another misconception is the survival rate.  Well intending folks love to quote the wonderful survival statistics that we now have, in a valiant attempt to comfort you.  The big one for us is; 80% of kids survive Leukemia. This is a great statistic that is the result of significant medical advances that can be primarily attributed to the adaptation of clinical studies. If I would have had my son's diagnosis at the same age it would have likely been a death sentence. We are very grateful for these advances.  Nonetheless, lets pass this comforting statistic through my filter of harsh reality;

80% of kids survive Leukemia
My first thought on this, going back to diagnosis week;  Parents imagine your child being one of 10 in an airplane.  Now imagine that you get word that there is going to be a plane crash, but take comfort as only two of the kids will die in the crash.  Not very comforting.

My next opinion on this was formed when I learned of the definition of "survival".  All of the statistics are actually based on initial survival, for a period of 5 years.  What you don't hear is that nearly 2/3 of survivors later experience significant and chronic medical problems, or develop secondary cancers as adults that results from the treatment of their original cancer.  We're saving our children by pumping them full of poison and taking them to the brink, there's a price to pay for that, the collection of which  is currently weighing heavy on my mind...

Here's a clip from a Childhood Cancer website-

During and after cancer treatment, the main concerns for most families are the short- and long-term effects of the cancer and its treatment, and concerns about the cancer still being present or coming back.

It is certainly normal for families to want to put the cancer and its treatment behind them and to get back to a life that doesn't revolve around the cancer. But it’s important to realize that close follow-up care is a central part of this process that offers children the best chance for recovery and long-term survival.

Once treatment is finished, the health care team will set up a follow-up schedule. For many years after treatment, it is very important that children have regular follow-up exams with the cancer care team. As time goes by, the risk of the cancer coming back goes down, and doctor visits might be needed less often. But they are still important because some side effects of treatment might not show up until years later.

Because of major advances in treatment, more children treated for cancer are now surviving into adulthood. Doctors have learned that the treatment may affect children’s health later in life, so watching for health effects as they get older has become more of a concern in recent years.

Some of the more common late effects of cancer treatment include:

  • Heart or lung problems (due to certain chemotherapy drugs or radiation therapy)
  • Slowed or delayed growth and development (in the bones or overall) 
  • Changes in sexual development and ability to have children 
  • Learning problems 
  • Increased risk of other cancers later in life 
  • 74% of childhood cancer survivors have chronic illnesses, and some 40% of childhood cancer survivors have severe illnesses or die from such illnesses.
  • Cancer treatments can affect a child’s growth, fertility, and endocrine system. Child survivors may be permanently immunologically suppressed
  • Physical and neurocognitive disabilities resulting from treatment may prevent childhood cancer survivors from fully participating in school, social activities and eventually work, which can cause depression and feelings of isolation.
  • Statistics show that Childhood cancer survivors have more difficulty getting married and obtaining jobs, health and life insurance.
  • Body weight, obesity & diabetes.

I realize the the end of treatment that I so longed for when this all started, is no end at all.


Since we're in Childhood Cancer Awareness Month, I'll  also mention the following;


Support Childhood cancer fundraising organizations, but as with any charities be careful which ones you choose.

  • In 2006, the National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.

  • Pediatric cancer research is not only grossly under-funded by the government, it is also largely ignored by private drug companies. Pharmaceutical companies fund over 60 % of adult cancer research, but virtually nothing for kids.

  • And childhood cancer research only gets 2.96% of the money raised by the American Cancer Society.

  • The Leukemia Lymphoma society- on 2% actually goes to childhood cancer.

If you chose to give to an organization, be sure to do you do some research.  Some of the best organizations that directly affect the disease or the kids are locally/ regionally based.

Two of our local favorites;

CURE Childhood Cancer- Directly supporting Childhood Cancer Research

    Camp Sunshine Atlanta- Supporting Kids and Families through treatment

    Camp Rap-A-Hope