Thursday, February 20, 2014

Day 2 - Results

This morning Kayla got fitted for her very first hearing aids.  Not only will they help amplify the high pitch sounds she can no longer hear, but it will help with the ringing of the ears by omitting quiet but steady "white noise".  She is sporting the loaner pair today and so far she LOVES them.  She told me that not only can she hear everything so much better, but she can even hear herself better.  I had no idea she needed them so badly.  I am thrilled she is so happy about them! Ahhh... the little things!  Her new pair should arrive tomorrow, weather permitting.  If they don't make it, they will ship them to our house.  Gotta love St. Jude!!!!

So this was unexpected... Kayla passed the growth hormone test!  I will go into the details, but this means that for now she will not need the daily injections to help her grow.  Hopefully, she will continue to trend the way she has been. Of course, her Endo team will monitor her very closely.  She is still on the chart, but at the very low end.  If she continues to grow at the same rate, Kayla will most likely reach an adorable height of 5'1".  Fine by me!  Who knows. Maybe she will suddenly sprout all on her own.

The test went well. Kayla felt very yucky and tired, but tolerated it well. She did not get sick!  She slept through the end and was begging for cheese cake by the end. That's my girl!!! 

MRI results.
THANK GOD. NED. NED. NED. NED. NED. NED!!!!!!!!!!!!!!!!!

This is Kayla with Dr. Gajjar.  I can see the relief in her sweet eyes! And his.  Answered prayers. I can breathe again!!!!!!!!!! 

                                    "Look everyone, my picture is still hanging up!"

I know there is no magical answer to how her body will react to the the aftermath of poison and radiation her 7 year old body was given, so this is why we will continue to monitor her for years to come.  I can not say enough praise to St. Jude for allowing us to have the best medical team ever!!! The fact that we don't have to worry about getting a bill every three months is something I will forever be grateful for.  Every single penny donated goes towards these ongoing treatments, tests, research and SO much more.  Research that benefits children's cancer world wide. With so many other things to worry about, it's a blessing to not have to worry about bills adding up. We can just focus on getting through each day at a time. 

Right now, there is a tornado warning for Memphis. Yep. Never a dull moment!!!! Why worry about a silly tornado when you are floating as high as the sky with those beautiful magical words... NED. NO EVIDENCE OF DISEASE!!!!!!!!!!!

Wednesday, February 19, 2014

Day One... never a dull moment.

It's been a long day. I can not even imagine how tired Den is right now.  The days at St. Jude are literally exhausting. 

Kayla had a few big appointments today.  She had her MRI. Of course, that's huge!  So important and to never be minimized again by me. Ever.  Recently, Kayla had been complaining of some vision changes. She was having a tough time seeing and couldn't really pinpoint to us if it was distance or close up that was worse. Honestly, I didn't really go to any dark place.  I was about her age (maybe a little older) when I needed glasses for the first time.  A few friends of hers are wearing them now.  She had even mentioned how it wasn't fair and that she thought that glasses were so cool!  So, of course, I was hoping it was just that. At a minimum she would require glasses.  She did have a vision test at school which she did not pass.  They attached a note asking us to see a "real" eye doctor. So, luckily we were able to get her in while at St. Jude.  It's a place where they know specifically what to look for and are especially used to dealing with vision problems related to cancer or from treatment. 

Kayla has cataracts in both eyes.  They are small but were not there before.  This is a result of her treatment. Treatment that if she had not had, she would not be alive today.  I am afraid that it's just a side effect from what we had to do to give her life. A trade.  A trade we made and we still don't know what it will continue to do to her.  It sucks but I am SO grateful that it was not a new tumor causing the vision problems. It very well could have been and I am focusing my energy on being grateful it isn't that.   Right now the plan is to continue to monitor them.   Den will talk to Dr. Gajjar more about it tomorrow.  For now, we are told that surgery is not something they want to jump to yet.  If it gets worse, then that will be the only way to correct it. We will cross that bridge if we have to.  Unfortunately, no glasses will help with this vision problem.  So, we will have to find ways to modify in the classroom.  Kayla was SO upset.  She wanted to "prove" to us that she wasn't making it up... but she did not expect to have something that would not be able to be corrected with glasses. 

Tomorrow is a big day.  In the morning, she will meet with audiology to have a hearing device fitted to hopefully help with the ringing in her ears.  Then, she has the big growth hormone study.  I am hoping to skype in and be there to support them in any way I can. It's going to be long and tough.  Then, when that's over, they will head over to E Clinic to meet with Dr. Gajjar to discuss the results of the MRI and find out more about her cataracts.

Donna and Katelyn are on their way here. God love them!  I should really buy one of those pedometers on the days of scan results.  I bet I take a million steps with all the pacing I do....

Thank you for all of the amazing support, texts, emails, love, prayers and candles. Don't stop!

Sunday, February 9, 2014

1 year 8 months post treatment - Scan time!

How could it possibly be scan time already?  These three month intervals are just flying by!  As of right now, Kayla is officially 1 year and 8 months post treatment. Go baby girl GO!  I was just realizing that this coming August's check up will be the last "3 month" one and Kayla will then, God willing, be moved to every 6 months for her MRI's. So if. Scratch that! WHEN her MRI reads NED again, she will have two more tests done at the 3 month mark.

School is going great.  We have been blessed with yet another fantastic teacher for both kids this year.  I'm convinced Anthony will be an engineer one day. This kid is obsessed with numbers. He is now dividing and multiplying - at 6 years old!  Also, he has been writing his own song to perform at American Idol as soon as he is old enough.  He loves singing it in front of anyone who will listen. It's so stinkin' cute!!  

Both kids recently graduated to their yellow belt in Tae Kwon Do.  It was a very special and proud moment. I know that both of them, in their own way, tried so hard!  I love watching them get better and better.  Kayla is still loving her Piano lessons.  It's time for a new book! I can't believe how many she has plowed through.  Watching her perform Carol of the Bells for our Church at Christmas was simply amazing.  I asked her if she was nervous after and she said, "No. I was only nervous walking up there past everyone. Then it was easy."  I love the calm effect it has on her when she plays.  When school is stressing her out, or life... she just plays and all the hard stuff just seems to disappear for a while.
Last month, we got invited to do the most amazing thing ever! We got to have a private tour of 6 Flags Discovery Kingdom and a private dolphin swim!  I just want to say THANK YOU again to Chelsea and Becky for making this magical day happen.  It was a day that can never be duplicated and for sure will never be forgotten! 

This next week I will be feeling the nerves. The lovely scanxiety will rear its ugly head once again.  It's something that just can't be helped. Kayla and her dad will fly out to Memphis on the 18th (next Tuesday) and are scheduled to fly home on Saturday. We are preparing for this visit to be a little tougher than the past ones.  Kayla's endocrine team is going to do a special test on her that will determine how much growth hormone they will be putting her on.  This is a pretty brutal test. In order to get her body to produce what they need, she will be made hypoglycemic.  She will be very sick for a few hours while they do hourly blood draws.  Once the test is over, they will make sure she gets the sugar she needs to feel better.  I keep reminding her that this is not Chemo and she does not have cancer again.  It's just so that they can give her the special medicine to help her start growing again.  Kayla has been in the same shoe size for almost 3 years now.  It will be nice to see her start growing again.   Once this test is complete and Kayla starts to feel better, they will head on over to E Clinic to meet with Dr. Gajjar to go over the results of this MRI.  So that will be a very long and tough day for all of us.

KFGY will be hosting a radiothon, Country Cares to benefit St. Jude from 6am-7pm on February 27th and 6am-7pm on February 28th. If anyone who is local wants to help out, they are looking for people to take calls. Here is the link:  Sign Up Here  See if there is a time that might work for you to help out.  These events are highly energized and very moving!!  Next Sunday, we are going to do a pre-recorded radio interview with Froggy for the radiothon.  It has been a while since we have done one.  As always, we are looking so forward to supporting St. Jude in every way we can.

Please keep Kayla in your thoughts and prayers.  This means so much to us!!  I promise to keep you all updated next week as we get to walk through those magical doors once again. Please God, please keep this just as routine as possible. Kayla has some living to do! ;)

xo, Kayla's mommy