Life After Cancer | Dylan Update 10.6.17


I cannot begin to thank everyone for all of your prayers, love and support last week!! We are incredibly blessed by the community that the Lord has surrounded us with and are so very thankful for each and every one of you!! 

There may be some people reading this who have no idea what happened, so I will start at the beginning.  

Last Wednesday, I came home from my morning walk to be only greeted by Andrew.  Usually I have both boys jumping around and welcoming me in the morning.  This morning was quite different.  I saw Dylan over in the living room laying on the floor and assumed that he and Andrew were fighting (which is usually the case).  Erik was in the other room and did not know what was going on.  I walked over to Dylan and realized he was covered in throw up.  He REALLY hates throwing up (don't we all??) and I assumed he just got sick.  I picked him up and he would not look at me or respond to me.  His eyes were glazed over.  He was breathing, but his body was completely limp.  <<<----- insert freak out moment.  I screamed for Erik and watched as Dylan's head started twitching to the right and his eyes were bobbing back and forth and never looking at me.  

Guys, this could have been bad. REALLY bad.  He could have been on the tile when he fell, he could have hit his head on something, he could have been lying on his back and aspirated on his own vomit and who knows what would have happened could have been worse.  Praising God for protection when I could not see him.  All of this happened within 5 min.  So fast.  



Dylan has had seizures in the past.  Small ones. Tiny ones.  He would come up to me (he could sense when they were coming) and would hug me tight, tense up, take a deep breath and it would be done.  10 seconds max.  And then he would be on his merry way.  This time was different.  Very different.  

Dylan has been on Keppra to control his seizures for almost 3 years.  It has been over 2 years since we have seen any type of activity.  We have always had rescue med in case of emergency but have never had to use it....until now.  

I did not know if I was supposed to call 911 or what to do, so of course I called my amazing sister Mandy who is an ER nurse (and graduating with her NP in Dec....Im a proud big sister!)  She calmed me down, told me what to look for and sent my brother in law Josh over to the house while she rushed home from the gym. They live a few blocks away and he happened to be off shift (He is a Firefighter Paramedic).  It all happened so fast.  I started crying and Andrew started to get worried when I cried....but we all assured him Dylan would be ok.  But I did not know that for sure.  All the thoughts running through my head.....why a big seizure, why now? Does he have a brain tumor? What the heck is going on??? Amazingly, I was calm.  I was crying, but calm and going through the motions.  Like God took over my body and I, the crazed mom, watched from the outside crying uncontrollably. 

We gave him the rescue med and he eventually stopped seizing.  I held his not so little body in my arms, his lifeless limbs, just praying he would look at me, just once, to let me know he was ok. But he did not.  He could not.  I guess when people are having a seizure, they know what is going on, but they cannot communicate.  So then that made my heart hurt even more.  My poor baby was frightened and could not speak.  He had tears dripping from his eyes and kept throwing up.  We all hugged him tight and reassured him we loved him and we are taking care of him.  

Because this was not our first rodeo going to the hospital, I grabbed the essentials and Mandy jumped in the truck with me and we headed down to Thunderbird.  He was stable and breathing from the rescue med but still not "there".  On the way to the hospital, Mandy called her friend who is the ER charge nurse at Thunderbird pediatrics and she got us into a room right away.  She was not supposed to be there but God had her there at the right time and had her working crazy extra hours just so she could welcome us when we got there.  Mandy's other friend was also there to teach a class of nurses and just happened to be getting there the same time we were.  Details.  Lots of details that were orchestrated all together to bring together the big picture.  God is in the details.  He cares about the details.  Always....we just need to recognize them <3 


When we got to the hospital, they went over his history, which is like a small novel and then tried to get an IV started.  While they were doing that, I saw his hand start to twitch and the nurse thought he was trying to fight her, but when we opened his eyelids, his eyeballs were dancing around again.  It's so scary to watch.  To not be able to stop.  To just sit there and wait for the meds to do their job.  After another dose of heavy sedatives, he was out.  Out for almost the rest of the day! Seizures take a lot of person.  Their body automatically shuts down to start repairing and building up strength again, so that, along with the meds really knocked him out.  I just stared at my sleeping baby and prayed for God to protect him.  If it was "just" a seizure, I could handle was the other stuff that scared me.  But as always, I felt the gently voice of the Lord telling me that He was there....that He loved Dylan more than I could possibly imagine....and that He would get us through this.  No matter what "this" was.  


Philippians 4:7 "And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. "


His oxygen levels were low when we got to the hospital.....funny how a completely passed out child will still fight when you try to stick something up his nose.... Dylan, he is a fighter!! He woke up once randomly while we were still in the ER, yanked off the oxygen in one swoop and laid back down and passed out.  He's a funny kid!!



We got admitted to a room and they monitored his oxygen levels and heart rate, and besides some fluids in his IV, we were just there for monitoring.  He woke for a few minutes mid day and was being super goofy....but like on drugs goofy (because he was!) and then passed out again.  I ordered him some chicken and fries hoping he would wake up.  He eventually woke up that evening and was famished and scarfed down the cold chicken and fries.  He yanked off his IV, thankfully not out of his arm, just the IV that was connected and pulled off his pulse ox too.  He gets a little feisty! It all made me very thankful that we went through his cancer journey when he was a baby.  It would have made things so much harder for him (and me) going through it at an older age.  So I guess if we had to have cancer, I am glad it was when we did! He is definitely not a fan of hospital rooms or being confined to a bed or a pole for that matter.  It was so nice to see his big eyes looking into mine once more and see his ridiculously funny personality coming out again! 


Daddy came by that evening with Andrew and Dylan greeted them at the automatic doors to the entry of the peds unit!! If welcoming his family wasn't exciting enough, watching the doors made it even better!! Erik brought Chick-fi-la, Dylan's favorite and he crammed all 12 nuggets in his hands, hoarding them to make sure nobody took his nuggets.  You cannot mess with this kid and his food!! 

Then the boys had some cuddle time! When Dylan cuddles, he likes to say, "All the family, all together"....and he kept saying it over and over. 


The night was pretty uneventful.  If you have ever had to sleep on the comfy beds they provide for guests, you know there was not a lot of sleeping going on either.  Dylan was wide awake at 3 am and wanted to play.  I don't blame him, he had slept the entire day.  But oh my goodness, I was in a complete zombie state.  There are only so many cartoons a kid can watch before they go crazy and Dylan was at the breaking point.  I knew we were scheduled for an EEG that morning so I was hoping they got us in quickly....and more that he would cooperate.  By some sort of miracle and the grace of God, he did!! He blew me away with how chill and cooperative he was!! This was definitely NOT the norm for Dylan.  Praise God he sat there for 20 minutes and did not yank every single little probe off!! The one on his chest lasted til about halfway through, but I was still impressed.  


After the EEG we had to wait for results.  I talked the nurse into letting me take him to the cafeteria to get some energy out and some breakfast.  It was like a jail break.  He squealed once we were in the hallway and I let him run up and down for a few minutes.  Not going to lie, I was feeling a little giddy too!! I do not know how I stayed in the hospital room for days on end when he was in the hospital 8 years ago.....after 24 hours I was about to go nuts!! Again....God is so good!  

We waited around for the docs.....and waited some more.  Waiting is my favorite.  They didn't want him going to the playground or leave the floor just in case the docs came.  So we pulled the wagon around the unit 5 times and painted 5 different crafts in the playroom....all that killed about 10 minutes!! 


We played with snapchat filters and making videos to send to family.  We colored, played with stickers, toys, and whatever else I could do to keep his attention.  The whole time Dylan was LOUDLY exclaiming he wanted to leave, he wanted to go HOME!! And me, in my sleep deprived stupor was right there with him! 

Finally the docs came in and gave us the results from the EEG.  They said they were abnormal....meaning there was seizure activity....which we already knew.  They said that this type of seizure does not normally appear out of nowhere.  That usually they will see them after a big fall, getting sick, or after staring episodes or smaller seizures.  With Dylan, there was not warning signs or anything to explain why it happened.  That's alarming.  But again, who is in control.  Not me, that's for sure!! So they increased his dosage to keep up with his growing body and we are hoping and praying for the best.  His blood tests came back normal so they did not suggest a possible tumor or anything else the body was trying to fight (PRAISE GOD).  He has had a recent MRI from his endocrinologist so they did not feel the need to do another one at this time. 

So now we wait.  We prepare.  We plan.  And we trust the Lord.  I will have his rescue meds with me at all times and I will not live in fear, but I will be prepared if or when it happens.  I can't live in fear,  fear is not of the Lord.  One of my favorite verses is this one, and it brings me great comfort and strength when I tend to let fear creep in.....

2 Timothy 1:7 "For God has not given us a spirit of fear, but of power and of love and of a sound mind." 

Thank you again for all of your prayers and support.....we wouldn't be where we are today without you!!! I will keep you updated as things arise :) For now, I leave you with Dylan and Ranger....our pain in the rear puppy....good thing he is cute!!