Dylan Update July 2016 Part 2 | Pray for Dylan

Hello again!!!

 First off, the GOOD news!! Dylan has been seizure FREEEEEEE for 3 months!! This is a HUGE praise! He was still having a couple seizures a week while on meds and we were really having a hard time with the side effects of his medicine.  We prayed about switching his medicine but felt like God was telling us to wait a little longer....and then came seizure free Dylan!! So so so very thankful for this! 

We have also been potty training! This has been an adventure in and of itself.  Dylan can be very stubborn.  He learns from the best!! (ahem, I will not mention any names) He is not motivated by anything.....I have tried all sorts of bribes, sticker charts, toys....nothing!! His brother Andrew has even tried to fib on his behalf so that Andrew can get the toy! Andrew will do anything for a toy or candy....he's the easy one.  Dylan is doing really well with peeing on the potty....yes, peeing ON the potty!! LOL!! But sometimes he gets it IN the potty too.  But overall, I am really happy with this progress.  Poop....well, that's not going so well.  I know a lot of average kids struggle with this too, so I am trying to be patient.  After 7 years of changing diapers for this boy....I AM DONE.  I mean, you should see how much this kid eats!!! Get the point?? Anyways....we have ditched the underwear and are now using pull ups. There's only so many times I can clean poop out of underwear....and tossing them has become quite expensive.  In come the pull-ups....that the state provides!!! YAY! Another blessing! As the old saying goes, "They won't go to college wearing diapers"....well, I am REALLY hoping that is true!! We will keep working on it :) 

He's going to kill me for this picture some day....but I cannot help it!! He was so proud in his paw patrol undies the first day!! And pretty much decided it was all he needed to wear for the day....his shorts and shirt got to hang out on the patio rocking chairs that morning :) 

Now, the not so fun news.  I have to tell you, I have learned a lot in 7 years with this child and medical lingo and such....but then came this bomb!! A whole new ball game.  

Dylan is going through PUBERTY.  Yes, you read that correctly, puberty! He is 7 years old.  7 and 2 months to be exact. It's not exactly the ideal age to go through puberty.  And it is NOT a known side effect of cancer treatment.  In fact, people who go through chemo at a young age are usually delayed.  When we visited Dylan's oncologist back in March, we had him do a full blood panel to see if there was anything off.  Dylan had been having bad body odor for weeks.  Not just stinky boy....I know what that smells like....he had full on MAN stink!!  

We thought it had something to do with his seizure meds, but after talking to the neurologist, we knew it was not that. Dr. G thought it was strange too but did not think that puberty was even on the radar.  Once he got the blood work back, he saw a couple red flags pertaining to his pituitary gland and testosterone levels. He then referred us to an endocrinologist.  A new doctor for us!! She was incredibly nice! This was also the first time Dylan let someone take his blood pressure without a fight...I was impressed! He has had it taken at least 100 times!! I guess there is a first time for everything! 

The doctor examined him and could tell immediately from his man parts that he was further along in the growth process than he should be (I knew I was not going crazy!!)  We then did an x-ray to check his growth plate and it showed that he is around the age of 8, so it's about a year ahead.  We caught the process at the beginning so that is good.  In order to get approved for hormone therapy to stop the puberty process, we have to get an extensive MRI. They need to check his pituitary gland and make sure there is nothing wrong with it.  

I just put this in here because his little hand is so cute!! 

I just put this in here because his little hand is so cute!! 

In order to do an MRI, we have to put him under anesthesia AGAIN.  This is not my favorite thing, but we have to get this done.  He has one scheduled for the 20th.  This MRI will also give us a really good picture of his brain, so that will also help if there is anything else wrong.  We do not know what has made Dylan's body go into puberty early. The doctor said that it could have been one of his seizures that caused it, but we should know more after the MRI. The good news is that it can be stopped and almost completely reversed! PRAISE GOD!!! We are also waiting on a referral to get some genetic testing done.  Dr Graham and Dylan's pediatrician do not believe there is an underlying issue, but we want to cover all of the bases just in case and get a whole picture of what is going on.  If you can pray for us in the meantime for the changes that happen during puberty....yes, all of the changes....that those can be reversed and he can get back to being a 7 year old boy!! 

One last thing......I am not strong.  In fact, I am weak, I am fragile, I am scared....I am human.  At the end of the day, I know that I can rest in my Father's arms and it is HE who will carry me through.  We cannot handle this on our own.  I would be a huge mess.  I AM a huge mess.  But I know, I KNOW, beyond a shadow of a doubt, that the Lord will bring us through.  He is our provider physically, emotionally, and spiritually.  He is my ROCK. Sometimes I feel so helpless....because I am.  I don't think I can handle one more day of bad news, or hiccup in the road, or putting my baby through more tests.  But for some reason, the Lord has chosen Erik and I to have the privilege and honor of raising this special boy....and He promises to bring us through these trials.  And I will rest in that truth.  And cling to it.  

James 1:2-4

2 Consider it all joy, my brethren, when you encounter various trials, 3 knowing that the testing of your faith produces endurance. 4 And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing

Deuteronomy 31:8

8 The Lord is the one who goes ahead of you; He will be with you. He will not fail you or forsake you. Do not fear or be dismayed.


The race is not over yet my friends :)