How We Got Here

» Posted by on Mar 18, 2012 in Updates | 0 comments

I thought it was about time to write out the events that led to Ethan’s diagnosis. Leukemia is a sneaky cancer. It comes on fast and can be fatal within weeks if not diagnosed and treated. Luckily we managed to catch Ethan’s cancer before it got out of hand. Many of his symptoms we remembered retrospectively after knowing more details about leukemia.

During the month of January we noticed Ethan was pretty lethargic. We homeschool and he was pretty hard to motivate. He kept lying down on the floor and couch during lessons. He was pale even in his lips. My dad noticed that his bruises were different, more reddish than purple and long lasting. On January 21st we took him in to the walk in clinic because the lymph nodes in his neck were extremely large, so large we couldn’t really see his jawline. He also had enlarged lymph nodes on the back of his skull which I didn’t even know were there! The doctor noticed that one of his ear drums was red and had fluid behind it. So she gave us a 5 day course of antibiotics and sent us home. The next day he started running a low grade fever despite being on antibiotics.

We took him in to our pediatrician on January 24th because he wasn’t getting better. The fever was hanging around and the lymph nodes weren’t going down at all. She gave us a couple immune support things to try, thinking maybe he had a virus brewing. The rest of that week we were kind of in a holding pattern. By the end of the weekend I just knew something was not right with him. I couldn’t describe it then as anything other than a strong conviction or intuition. Now I know without a shadow of a doubt that Jesus was guiding my footsteps. On Monday January 30th I insisted on taking him back in to see our pediatrician and I knew we wouldn’t be leaving without getting some blood work done.

Dr. Wells listened to me and agreed that it was worth drawing blood. I jokingly said “People don’t still get mono do they?”. If only it would have been that minor. The appointment didn’t go well. Ethan was not cooperative about getting his blood drawn so she sent us to the lab at the hospital. I ended up having to forcibly hold Ethan while they drew his blood. A lot of tears were shed to get it drawn. Thank Jesus I toughed it out because those labs results were what diagnosed Ethan’s leukemia. I shudder to think what might have happened if I had chickened out of forcing the blood draw on him.

Tomorrow I will write about “the day” we found out. It might take me a couple tries and a hand full of tissues to get it all out.

Many of you have asked me “how does this happen?” “why Ethan?” “is this genetic?”. I guess the truth is that scientists really don’t know. It’s not genetic in the sense that you pass it down like red hair or blue eyes but it has everything to do with your genes. It’s been described to me as an epigenetic condition. When genes act in their own environment, under outside influences, they can spontaneously mutate. Even genetically identical twins only have a 25% chance of the other getting leukemia after the one is diagnosed. They do think some people are more genetically predisposed to getting leukemia. Other causes are very loosely defined: toxic exposure, exposure to magnetic fields, etc. The bottom line is: it only takes a single white blood cell to go haywire and start to replicate which becomes full blown leukemia.

If I were to give advice for other mothers out there it would be this:

  • Choose a pediatrician who listens to you when you say something is wrong with your child. For us, this is a naturopathic pediatrician. We have found them to be infinitely more responsive and focused on the big picture of health instead of just managing symptoms.
  • Consider getting an annual blood panel for everyone in your family, not because you are crazy paranoid but because blood screening can help pinpoint lots of general health issues like: vitamin D deficiency, iron deficiency, high cholesterol, liver & kidney function and, yes, even cancer.
  • Be in tune with your children. From birth you will know your child better than anyone else. So many parenting “methods” encourage you to shut off your natural parenting instincts by telling you that your child is manipulating you from birth with their cries. We have to stop believing this lie. You have a God given intuition to respond to your child’s needs and be in tune with them from the moment they are born. Be responsive. If you are trying a parenting method and it “feels wrong”, stop and LISTEN!!! If you desensitize yourself to this natural instinct, you may never get it back. It is valuable parenting tool.
  • Breastfeed. Yep, I’m going to go there. There are several medical studies linking breastfeeding with a decrease in childhood leukemia (read them here, here and here). My son has leukemia even though I breastfeed him exclusively from birth. He never had a single drop of formula and he even breastfed until he was 23 months old and self weaned. And he still has cancer. And I still think you should do everything you can to provide breastmilk for your baby. The worst thing for someone in my situation would be to have to live in regret… thinking “what if I had breastfed?”. Give yourself and your child the best chance for health! This month the American Academy of Pediatrics renewed their breastfeeding statement to say that breastfeeding is not a lifestyle choice but a matter of public health. Even though Ethan has cancer I do believe that his fantastic response to treatment is partially because of the healthy start to life that I was able to give him. He has had nearly no major side effects to treatment. Each new drug we throw at him, he comes through with flying colors. They told me he would probably be re-hospitalized due to fever and infection and he hasn’t yet. They warned me that most of their patients get a naso-gastric feeding tube because they can’t maintain their weight and he hasn’t needed one. They keep warning me that “this drug will probably give X Y and Z side effects” and they don’t seem to produce them in Ethan. It’s like his body wants to fight this and help heal itself. He is a healthy boy despite his cancer and I really do believe that the foundation for that was laid when I breastfed him. Breastfeeding moms shouldn’t have to go it alone. There are so. many. great. resources. out. there. I know you can do it!

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