Friday, August 25, 2017

good news, bad news

Cody met with the dr today before his Avastin infusion. The tumor in his cerebellum has shown a positive response with the current treatment.  Yay! 

But, there are some changes they're concerned about. Not yay😕  Back in his frontal lobe again there is a small area that is lighting up on the MRI, worrisome of new tumor growth. At this point, they're not going to change anything with treatment but cody will have another scan in 2 months to compare. At that time, if it is stable or there is no change they wouldn't do anything. If the spot is looking bigger, they would send the images to Mayo as surgery would possibly be an option. 

So not exactly the results we were hoping for, but we're going to wait the two months and see what the next scan brings. 

Cody will continue with Avastin treatments every two weeks. He is also doing chemo every other week. He starts the chemo on the day of Avastin and takes it for one week then has one week off. He has been tolerating it all very well and labs continue to look good. 

Thank you for all of your thoughts and prayers while we do more "waiting."

Wednesday, August 16, 2017

prayers for my girl

a lot of thought has gone into this and deciding to share was not an easy decision. i'm hoping this will be therapeutic for me as well as help with the many questions that are sure to come in the following weeks.

my mommy heart is broken.

many of you know, but many do not. we have struggled with kenley's behavior for years and have been seeking help from as many avenues as possible since she was 3 years old. it is hard for some to believe that our sweet little kenley girl could have so many issues. but those closest to us, and those who have personally lived through our nightmare, can testify to the trauma it has brought to our lives.

there are those who have never seen one of kenley's behaviors. they question if things can really be that bad. or they tell us their kids are naughty too. or wonder why we can't get her behavior in control. she's only 7 (or 3, 4, 5, or 6) how bad can it really be. we know they don't understand. how could they? unless you've lived our nightmare, it's not something you can understand.

her behavior has gotten to the point that she is putting all our safety, including her own, in jeopardy. she holds us hostage with her violence and aggression. two inpatient hospital stays at avera behavioral health. calls to law enforcement. rides in the back seat of a cop car to the emergency room. injuries to others. items that are damaged or completely destroyed. and the worst, the absolute worst, is the fear i have to witness on the faces of the boys.

questions flood my brain. will life ever get better for us? will my daughter ever get better? how will my family ever make it through this darkness? and when i'm not asking myself these questions, the guilt sets in. oh my lord, the guilt! it crushes my soul. i beat myself up thinking what a horrible parent i am...that i can't control my own child or her behavior is somehow my fault. it leaves me completely defeated and feeling like a failure.

so where are we now? the only option left for our family is to place kenley in a residential treatment center to get her the help we are unable to provide. she is currently on a waiting list to get into gerard academy located in austin, minnesota.  and, until then, we have decided on a voluntary out of home placement. which basically means, in order to keep everyone safe, kenley has been placed in a foster family until she can get into a residential center. we, as her parents, will continue to have control over "all-things-kenley" however this option provides safety for all involved.

this is a huge deal and i know it will bring about a lot of questions and stir up a lot of emotions for many of you. this has been an incredibly difficult time for our family as well.

although we are drained, mentally and physically, kenley is still our daughter. we have fought tooth and nail to get this girl the help she deserves. i envision a day where she can participate functionally in all environments within society and gives back to the world in some amazing way. and in order to help her get to that place, we must fight for her today. were these decisions easy? no freaking way!

but we know in our hearts and believe a million times over, that this is not the end of kenley's story.