Wednesday, May 21, 2014

St Jude update - 2 yrs post treatment

So, I somehow forgot to grab the laptop on the way to the airport. Boooooo mommy!!!!

I am so sorry! I can tell you I got my punishment.  Being at St. Jude and not being able to blog was like eating your favorite food and not being able to taste it!  I won't do that again!

So, let me make it up to you!

First of all, I will start with the great news. Two years after the last treatment, Kayla's MRI remains NED. NO EVIDENCE OF DISEASE!!!! CLEAR!!!! Whoooooo hoooooo!!!! GO Kayla GO! Now, Kayla graduates to scans every 6 months for the next 3 years.  I can not tell you what mixed emotions this news brings. Of course the biggest is just a deep relief that the treatment has worked for her so far to keep Medulloblastoma AWAY.  Yes, there are still risks. Risks. God I hate that word.  For now, lets just be happy!

Saturday morning, Kayla got to represent in our local town of Santa Rosa in the "Heroes and Helpers" parade. Her brother and Dad were also there to join in while I worked.  It looked like SO much fun.  I can not even express in words how wonderful and caring Rob and Joss are (Froggy 92.9).  We are happy to help and share our journey with them.  It's an amazing thing to witness the love and awareness that comes from Kayla's battle. Stinks that it's my kid... but I'm SO incredibly proud of her. And she is so incredibly proud of herself (most importantly). 

Oh wait! I forgot some big news! Kayla turned 10!!!!!! This is how behind my blogging is. I know it's great that things are going so good that I am busy with work and such to not have time to blog this important information, but it makes me sad.  You have been such an incredible support to us and I want to keep the really important big things on here... and turning double digits is HUGE! So, here is a few birthday pics.

Last picture a 9 years old!
 Brotherly love... YES!!! Happy double digits Kayla!

 It wouldn't be a birthday without my BFF Sisters! :)

So, skip to the evening of the parade. Kayla and I geared up to head back to St. Jude.  It was finally my time to go with her. Den was busy with finals at school.  Beyond my time to go though.  Honestly!  It's so hard being at home waiting on all of the important details and updates.  SO hard not being there.  So here it was. My turn. My first time flying back alone with Kayla.  Actually, I had a few people who wanted to come but I was happy to go and have this alone time with my girl. We just don't get enough of it. We had so much fun together. God I love her.  She is just such an incredible and bright girl.  Easy to be around. Eager to please. My baby girl.  I couldn't be more proud of the person she is.

After two long flights, we arrived at St Jude. The weather was still mild, but humid.  The smells became all to familiar again to us.  The shiny waxy floors.  The families you pass by where we share that familiar glance of understanding with.  We were at our home away from home.  A place where we just have a shared bond and unexplainable understanding... The sounds of that HEPA filter buzzing in our ear as we slept.  Ugh. What would happen this time? What would the MRI read? And what side effect would we have to learn about this time?

Hope. We just have to hope!

Day 1.

Kayla checked in happily at A/T. She chuckled as she forgot her medical record number. I could never.  We got her new wrist band and we headed over to E clinic to have this persistent cough she has had checked out. Honestly, we have all been hit pretty hard with allergies this time of year, but a pertussis warning was just issued in her school right before we left! The last thing we want to do is put these neutropenic kids at risk!  So, we spent a good hour and a half being checked out to be officially diagnosed with "allergies".  Best dx I have ever heard!!! ;)  

We headed over to the cafeteria for some good ol' southern grits.  Kayla has now acquired a taste or a "fixin" for grits.  So grits she must have!  It sure doesn't take long for me to start adding that southern twang to my lingo. 

Kayla then had a visit with her visual specialist at St. Jude.

Unfortunately, Kayla's cataracts have progressed to the point that she could actually qualify for surgery.  We were advised to put it off until it really affects her and is a "problem".  She isn't driving, so that's good!  Also, her incredible IEP team at school has made so many wonderful accommodations that we will hopefully be able to delay a year.  We shall see.... but we are hopeful.   Surgery will require us to be at St. Jude for 2 weeks. One week per eye. There are risks with the surgery (as there are with any surgery).  One thing her doctor is certain of is that she will require reading glasses after.  News to me!!!  So, we will hopefully be able to push this out for a bit.  She was checked again to see if regular glasses would help at this point, and they still will not. So we wait.

Kayla then got to A/T where she had her vitals taken and she got her IV.  Miss Virgina was there again. We sure do love her! Kayla's veins have seemed to have grown (even if the rest of her has remained pretty small).  Maybe it was Virginia talking to them.. but they just popped up! Whoo hoo! It's the little things. Kayla was SO happy!!!! ONE stick!


Clearly, we were pretty happy about this visit!!!!! Kayla ate it all! Go Kayla :)

We went and visited Endo where they measured Kayla's sitting height along with regular height and weight. She has gained 1 lb. and 1 inch!!! No real updates other than that. The rest are private, but fine.

We finished our day with a visit down to the School where we could hug our beloved Miss Michaela!  How beautiful is this??? We can't go to St. Jude and not get our sugar!!!
Kayla was out like a light as we prepared for the next very full day starting with a 6:45 am MRI.

Day 2. 

How could this happen????? There was zero contact between A/T and MRI imaging.  Kayla had that IV for nothing. The wrong gauge was inserted.  She needed a 22 gauge and not a 24.  You have to have a bigger size tube for contrast MRI's darn it.  (yes, 22 is bigger than 24... opposite)  She had been SO brave. So strong. No tears. Now, she had had it! I couldn't blame her. I was ticked too! Seriously?? How is there no communication between these two important places?  I didn't need to flush her IV the night before. I didn't need to hand bathe her early that morning. She could have had a quick needle poke and an IV the next morning. UGH.  HOW DOES THIS HAPPEN? We were tired. We were nervous. We were frustrated. I witnessed the new nurses assistant setting up the station for her new IV. I witnessed her trembling hands and literally heard her prayers inside her head begging God that she would NOT be the one that had to try and get Kayla's new IV in place. It was between her and the grumpy senior nurse. Great. Just GREAT.  Kayla was having a hard time not sobbing but silently crying.  I was coaxing her to breathe like she was in labor. She was sitting on my lap and I was blowing her nose.  It was rough for her.  It was early. This was not fun.  Luckily it was the senior nurse that was the one to poke Kayla once again. Lucky for her she got it the first time.  I will NOT let that happen again.  Kayla picked Sleeping Beauty to watch during the MRI and I was rushing off to check out of the Grizzly House.  Our shuttle to the airport would be arriving at 12:00. The rest of the day was stacked.  

I rushed back to the hospital after lugging all of our bags across the humid parking lot and got back to MRI imaging about 10 minuted before she walked out with her nurse. What a trooper this kid is! Seriously.  

We headed over to Speech therapy and PT where she continued to awe them at how fantastic she is doing. PT was especially impressed.  Not only did Kayla do hopscotch forward but backward!!!!  The first in  history for her therapist at St. Jude so we were told.  He confirmed that Kayla should continue her amazing Tae Kwon Do! It's paying off!!!!  :)  GO Kayla GO!!! 

Time for E Clinic.  Result time!  I was pacing, tapping my fingers... completely unable to hold still!  This kind of stress is not something I would ever EVER wish on anyone.  Luckily, you know the results. Kayla's scans remained clear. No change. NED - No Evidence of Disease!!!! 

Eating more grits while waiting for her physical therapy appointment  ;)

We are so grateful. So so grateful that she is still here. Still breathing. Still fighting.  We will NEGU. NEVER!