The "bump" on my 9 year olds head.

Over the past few weeks my mind has been consumed with a never ending list of 'what needs to be done'.  Things like - getting my website and blog re-done for my business, updating pricing, getting all of my sessions edited, cutting the dead trees down in the back yard, getting my carpet cleaned, and schools supplies bought, and day care figured out, and my tires looked at on my car.... Things that I spent way to much time stressing about. Literally- to much time.

Today, Every. Single. Thing on that list was knocked down on the 'importance list' about 5000 times.

We spent about 3 hours here.

Children's Mercy Hospital

In this clinic.

Neurosurgery Clinic

For this child.

Kylie Marie

They were throwing out words that no parent ever wants to hear. "Bone tumor, Lesion, Biopsy, Surgery, Plates" and the worst one of them all "Chemo Therapy".

Now- Jump back a few months. to April of 2013. Kylie had a bump on her head that had been there for weeks.  She turned 9 in May and had her well child check with her pediatrician the first week of May.  I mentioned the 'bump', he felt it and ordered a series of X-rays.  I got a call the following week that all of her X-rays came back normal.   Looking back, I had that gut feeling that something wasn't right - but I decided to trust their findings (which were accurate at that time) and go on about our crazy life.

Now lets fast forward back to July. (sorry for the rambling)   July 21, I was in Atlanta for my photography workshop. I had called Kylie that night and she told me that she hit her head on the back of her dad's car seat and the 'bump' was so sore that she had been crying a lot.  

I got back to Kansas City late on July 22, called the pediatrician's office on Tuesday the 23 - they were able to see her the next day. 

We went in. and he thought it was filled with fluid - so he ordered a sonogram to double check. He said if it was fluid, it would go away on it's own. 

We had the sonogram the next day. I knew the second they set the prob on her head that something wasn't right. I'm no expert in reading sonograms, but it looked very, very off. We asked the sonogram technician what she saw. She wouldn't answer - then finally said "there is something there. That's all I can tell you."   So I did what I do and kept my cool, patiently waiting for the doctor to call me the next day.

He did. He said "Jessica we have Kylie's sonogram report. The radiologist wants you to go in for a CT scan so they can get a closer look. "   So. We did, on Monday.  She was a trooper, she laid there as still as could be and let the machine take thousands of images of her little head. She even had to get out and let them start an IV - so they could do it all over again with contrast.

CT scan

again, I not so patiently waited for the doctor to call me with those results. He did. on Wednesday- he said "Jessica, I have Kylie's CT results.  She has what they think is and Eosinophilic Granuloma. (I would link something here as to what is, but - it is so rare (as in 1:270,000 children)  that all you can really find on the internet is case studies.) and I have set up an appointment with the neurosurgeon for tomorrow."

Basically - an Eosinophilic Granuloma is a Tumor or Lesion of the bone.  Kylie's is on her skull. It is about 2" wide and 1.6 cm deep.  It has 'eatin' through the first and second layer of her Parietal bone. 

Most doctors do not consider an Eosinophilic Granuloma to be cancer. The neurosurgeon told me this is because cancer cells are mutated. These cells are not. But, they are very destructive.  It is however, treated like cancer.  In Kylie's case. She will have surgery on August 20 to remove the 'bump'. The will have to remove all 3 layers of her skull bone, if they don't it will come back. They will then place a plate on her skull since that part of the bone will be gone.   They will then run a pathology report to make 100% sure it is what they think. and, a few weeks later she will start Chemo. 

My heart is broken.  Literally broken. Kylie knows she is having surgery to remove the "bump".  I don't call it a 'tumor' or 'lesion' in front of her. She doesn't know about the plate. and the Doctor advised, not to tell her about the chemo.  We will tell her,  but in his words "One step at a time".

Kylie leaves on vacation to LA, California tomorrow with her dad and grandparents. She has been talking about this trip for ever, So I am so grateful she gets to go.    She starts 4th grade on August 14. And is suppose to start dance again at the first of September, however, it will have to wait a while. 

I guess my big question is - How do I prepare her for this? Hell, I don't even know how to prepare my self. 

With a heavy heart,  goodnight.

XO.