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."

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.

it's been a while, let's check in...

here is what's new since my last blog post........

*initially the radiation oncologist in sioux falls wanted a biopsy before talking about another round of radiation. after meeting with him (and sharing our strong feelings against it) we had him on our side. when looking at cody's scans, he said the biopsy would give us 100% certainty, however he was 95% sure this new spot was tumor/cancer. and if we were ok with 95% then he would go ahead with developing a new radiation treatment plan.

*in 2005, cody had a maximum dose of radiation at 30 treatments. when we went back in 2015 we pushed the envelope and they gave him another 18 treatments. when we showed up in his office again in march, the radiation oncologist couldn't believe he was talking to us yet again. cody (and his tumors) obviously aren't playing by any rules. you certainly wouldn't want to be placing any bets on him.

*you see, glioblastoma is the deadliest form of brain cancer. you have to be aggressive in any sort of treatment, because you already know the outcome. treatment is buying us time. because the new tumor is in cody's cerebellum, they felt it was far enough away from his previous tumors/treatment area that radiation could be a possibility.

*this tumor is deep, close to the brain stem, and close to his balance center. so the big question was..how aggressive do we want to be? the dr. made us make the decision. he explained the side effects of radiation would be no worse then letting the tumor go and getting side effects from the growing tumor. we were given the option of doing another maximum dose of 30 treatments, and that's what we took. this is essentially unheard of.

*the dr. wanted an up-to-the-minute mri to help develop his treatment plan. the tumor had already changed when compared to the scan just a few weeks prior.....basically confirming that we made the right decision. the dr. shared that it was a complicated plan and he lost sleep over it, but everything was eventually set to get started.

*cody gets radiation every day monday through friday. so far he's been tolerating it well. he's received 23 treatments and has 7 to go. he also continues to take a low dose of temodar (chemo) every day to help the radiation "work better."

*we also wanted to be proactive and start Avastin after the radiation has been completed. because avastin is done as an intravenous infusion, cody had to have a portacath placed. he had the procedure done today and cody described it as "a piece of cake."

*the port needs plenty of time to heal before starting treatment. he is scheduled for his first avastin infusion on may 30th and will receive infusions every 2 weeks.


so there's the **brief** low down. let me know if you have questions :)

Glioblastoma Multiforme (GBM), is an ugly ugly word.

On Cody's last MRI, February 27th, there was a new spot showing up that was concerning. When they compare his last 3 scans side by side you can see it was there/starting in December but was not there in the October scan.  Initially he was not experiencing any symptoms, but as of the last week or so, he has started feeling dizzy, extreme fatigue, and a little off balance. When he describes it to me, he usually says "I just don't feel good."

New tumor area....

Duke wanted to look into getting a biopsy. Cody wasn't thrilled with that idea, so we made an appointment with Mayo Clinic just to get another opinion. We met with both the neuro-oncologist and the neuro-surgeon. They were both on the same page, saying that doing a biopsy would carry unnecessary risks, when the diagnosis is not really in question. Surgery is also off the table because the tumor is so deep in his cerebellum. They were in agreement that the option for now is to get started with a new treatment. The chemo that Cody has been taking for the past 18 months is now considered ineffective because these new cells have popped up and started to grow. These are the options that were discussed...

*Avastin only---avastin is a tumor-starving therapy with the purpose being to prevent the growth of new blood vessels (blood vessels that feed tumors)

*Avastin + CCNU (Lomustine)---chemotherapy, different than what he's been on

*Radiation---we don't know if this would be an option, but worth looking in to. They would have to map out his old radiation plan and see if there would be any overlapping areas,  but because the new tumor is in a totally different area than the new one, they might be able to consider this.

*Optune Device---you'll have to look this up to see what it looks like, but it is basically a device that creates low intensity wave-like electric fields that help slow or stop cells from dividing. This would be something he would have to wear 22 hours a day, shaving his head every 3 days. (This is codys least favorite option).

These are all FDA approved treatments, nothing would be a trial. We want to talk to Duke yet again and need get appointments set up with his oncologist in Sioux Falls to move forward and get something started.

hey strangers!

How have you been? This is our 3rd Duke trip since my last posting. I'll try to get back in the swing of things...

*Codys last MRI was done on the 24th. We both were a little nervous about this one, as he has been experiencing some questioning "symptoms"....headaches and seizure activity (although he has not had an actual seizure).

*we were both extremely relieved when we heard his scan continues to look STABLE!! His symptoms are something we will continue to monitor moving forward, but they felt it could all just be cumulative effects of his overall chemo treatments.

*the beginning of October marked Codys 12th chemo cycle. Originally that was the goal and we figured he would be done as of this trip. There is no research that supports continued use of Temodar (chemo) beyond 12 months as data shows no effect on time of recurrence. HOWEVER, they did recommend Cody continue on with treatment for another 6 months, until April. His tumor does seem to be responding to the chemo and he is tolerating the treatments with little side effects! So we're kind of using this as a safety net, per say. Part of this decision is also due to some inconsistency in his cycles. You may remember his oncologist in Sioux Falls switching his chemo to a daily cycle rather than 1x/month. Duke did not agree with this and switched him back to the monthly cycles. His monthly cycles started over again in April, so technically they can consider a full year of monthly chemo from April to April....clear as mud???

*The plan is continue MRIs and Duke visits every 2 months

**So**those are the updates. If you want to stop reading there, you are more than welcome. The following is coming from my heart and is where I'm asking for specific prayer...

Although we are beyond thrilled and thankful for another stable scan, the doctors themselves tell us Codys brain is "not normal." If you could see the images on the disc, you would agree. It's an ugly looking brain. There has been damage. From the tumor itself, 2 brain surgeries, radiation, scar tissue, and the effects of months of chemotherapy.  So although the tumor is not progressing, we still have a lot to deal with on a daily basis. He is mean and angry, irritable, has a short temper, and struggles with memory. From the outside looking in, I can see where you are so relieved about this news (WE ARE TOO!!) but please don't forget about the little things that the kids and I are muddling our way through on a daily basis.

Thank you for your prayers and support ❤️

can you tell it's summer?  we've been super busy and we have a lot to catch up on.  but I don't have time for that today :)

some of you have been asking for a recent video I put together. a few weeks ago, cody was asked to be the honorary chairman for this year's nobles county relay for life. typically people would give a speech, but as you can imagine public speaking is neither of our strengths. so we put together a video instead.

the local newspaper came to our home and did an interview. you can read that article HERE

and this is the video we used to tell cody's story:

Duke part 3

Duke part 2

Come with us

have you guys played this game? holy cats.... blech!!  it wasn't fun, but i have to admit it was fun-ny!  if you're ever bored, give it a try. you'll see our experience in the video below. enjoy :)

**since cody switched back to a monthly cycle of chemo, he is currently in the middle of his second cycle. lab numbers show he is tolerating this well.

**monday the 25th will be cody's next mri. we will then leave on tuesday for north carolina with his duke appointment on the 27th.

**i have seriously noted some positive changes in cody's behavior since adjusting his seizure medication dosages. the changes are small, but they are there :)

**i have been having some serious issues with my back again. it's actually been bothering me for about a year now, but since cody was diagnosed last summer my issues were put on the back burner. i am scheduled for another mri (to compare with the ones i had years ago) to see if there are changes or what's going on. if you don't know, several years ago i was diagnosed with a thoracic cord syrinx (also known as: syringomyelia).  i won't get into details as to my new symptoms and concerns, but will let you know if anything comes out of my mri.

**this past week, we had the honor of attending "brynlee's first year in heaven" celebration. we are blessed to have jeff and emily as very dear friends.

easter

spend a saturday with me

winding down the evening

i'm kind of enjoying messing around and creating these videos. let me know what ya think. maybe i need to just stick to writing :)