Friday, May 3, 2013

Off the Charts

Today I received a call from the doctor and the first words out of his mouth were, "I received the results of the head ultrasound. We didn't find a tumor."  Despite the fact that those words are great to hear, they are not words I was expecting to hear.  I hadn't even considered cancer to be a possibility.

Zeek had his 6 month check up this past Monday.  He is reaching all of his mile stones and even advanced in some areas.  He is strong... so strong that the doctor couldn't complete his exam of Zeek's hips because of his leg strength.  Zeek is off the charts for his height, weight, and head circumference.  His head is growing at an accelerated rate and the doctor wanted to do an ultrasound to make sure everything is okay.  He wasn't too concerned about it because everyone in the family has large heads.  He also wanted to have the ultrasound done now while it's still possible.  They can only do head ultrasounds on infants while they still have their soft spot on the top of their head.  If they wait until the soft spot has closed an MRI has to be done and the baby has to be sedated.  So the 6 month check up consisted of impressive remarks about his development and his strength, 4 shots, and an order for a head ultrasound.  I got home and immediately printed out the CDC's growth charts and plotted out Zeek's stats from his 2, 4, and 6 month check ups.  Here they are:

Zeek's height and weight stats.
Zeek's head circumference at the top.
 So he's off the charts for everything.  He's a big ol' boy.  That's to be expected when your mom is 5'11" and your dad is 6'8".  I really wasn't worried about the ultrasound at all.  I took him in on Tuesday for the ultrasound.  They said it would take a couple days for the doctor to get the report.  This morning I called because I hadn't heard anything yet.  The doctor returned my call and now we're back to how the conversation began.  He said, "I received the results of the head ultrasound. We didn't find a tumor but there was mild dilation of the lateral ventricles."  And that is the point in the conversation where I scrambled to ask the right questions in order to have enough information so that I don't go searching for information on the internet that leaves me scared to death.  The problem is... I'm ignorant on this subject.  So that leaves me to ask questions which will have answers that I do not understand as well.  The rest of the conversation went something like this:
"What would cause that?"
"It could just be nothing or it could be hydrocephalus."
"If it is hydrocephalus, what would cause that and how would you treat it."
"There are many things that can cause hydrocephalus.  We will need to do an MRI.  He will need to be sedated.  Hydrocephalus is a build up of fluid in the brain."
There was more to this conversation.  This is really all that I remember other than the mention of a shunt being used to drain the fluid from his brain.  This conversation took place while I'm sitting at the table feeding this beautiful, ravenous little sumo baby a bowl full of green beans and rice cereal.  I'm sitting there looking at him unable to really process what is going on.  He is perfect.  He is healthy.  He had a bazillion ultrasounds during pregnancy that showed that his brain was perfect.  He went through chemo in utero and he's perfect... He went through chemo... CRAP!  What if it's my fault... Okay that's stupid.  The doctor's said that chemo cannot cause birth defects... what if it caused something else...what if... and that's when the tears started flowing.

Next week I will get a call to let me know when the MRI is scheduled.  They have to consult with the Pediatric Anesthesiologist first to make sure he's available.  I assume it will be scheduled for later in the week which will be good because I can't go if it's during my radiation time.  I'll be finished with radiation on Tuesday.  Woo-stinkin-hoo.  Yes, that was said with all the sarcasm I can muster right now.  I've been in treatment for cancer for over a year now.  April 26th was my Cancerversary or whatever they call it.  I thought I would be excited to be finished with treatment but I just feel like... big freakin' deal.  Now I can get back to living life without the excuse of a crappy immune system or burned skin to keep me from doing the things that need to be done.

Burns... radiation burns.  I was doing well.  My skin was holding up great until it stopped holding up well and I was no longer doing great.  It happened so quickly.  My armpit and my ribs hurt in a way that is hard to explain.  I can explain the part about the skin.  That's easy.  I will just say that there is an open wound and they have given me cream that is used on 3rd degree burn patients.  The tissue hurts all the way to the bone.  It is bad enough pain to keep me from sleeping at night which is why I have been prescribed pain meds.

This is my armpit when the skin first started to open up.  It actually has gotten a lot worse since this picture was taken.

I have actually been feeling pretty good except for the past couple weeks when the pain from the burns started to get bad.  I need to write my next post when I haven't had such a hard day.  I'm tired of sounding defeated because I don't feel defeated.  I take that back.  Today I feel defeated.  Today was the 4th day of my husband being out of town on business.  Today was my 33rd radiation treatment.  Today I was given news that my precious baby boy needs an MRI and there is the possibility of something being wrong.  Today I am emotionally exhausted.  It has been a long year.

Zeek on his 6 month birthday.  Ephraim dressed him up as a pirate.

Zeek bathing in a too-small-sink.


  1. First of all, I had no idea you and your hubs were so tall! I thought me and my hubs were tall (5'8" and 6'5") but you guys kill us!

    Second of all, I was thinking of you a lot this morning and I just kept feeling like Zeek is just fine, he just has big-headed genes :) Praying that I am right.

    Sorry about the radiation burns. It's nasty stuff but take solace that you are alllmost done. Big hugs.

  2. Hi Rebecca,
    Thank God you are almost done!! I am so sorry about the burns and open wounds. I can't imagine how painful that must be.
    I want you to know I am praying for you and Zeke. I too think he is fine and will be fine. He is just a big boy who is growing.
    Don't let the enemy paralyze you with fear. He wants to steal your joy and take your eyes off the blessings!
    I am praying my friend! Take care.
    Lisa Gallardo