24 April 2014

MRI #2

Rylie had her second MRI on Tuesday to see if they could detect any growth of her tumor on her mri. With the results of her last ophthalmology exam and the vep test the oncology department felt it would be best for us to get another mri to see exactly what we are looking at growth wise.

She did GREAT! Because the MRI was scheduled on such late notice the only appointment time available was 12:30pm in Riverton, which meant Rylie could not eat or drink anything past 6:00am. Which for a 2 year old is a long, long time! She did really well though. No complaints what so ever. Once we checked into the hospital it was smooth sailing! The Primary Children’s Hospital extension in Riverton is a bit of a drive for us but it was so worth it! No wait, and I mean NO wait! We walked in, check-in, they started her IV, and then off she went into the scan. It all went so smooth it makes me want to schedule all of her mri’s out there! Last time the sedatives made Rylie really cranky and she was pretty out of it for almost 48 hours. After talking to our sweet nurses about it this time they decided to try a new sedative, our new best friend. Rylie went to sleep and woke up much less cranky!!! Even with some problems with her IV she hardly cried. Once she was “awake” we headed home. She took a nice long nap and woke up happy as can be… ready for a snack and of course another go of The Little Mermaid!

We were able to get the results of the mri yesterday and as expected Rylie’s tumors have grow. Just two months ago the tumor in Rylie’s left eye measured 9.2 mm in length and it now measures 12.4mm. The width of the tumor 2 months ago was 8.8mm and yesterday is measures 11mm. There was a tumor in her right eye that they were “watching” and they now know it’s a going to be a problem as well. 2 months ago the tumor on the right side measured at 4.9mm in length and it now measures at 6.3mm. We knew there would be some growth but the doctors are all pretty stunned there was this much growth in such a short period of time. 

Have you ever taken a look at a millimeter on a ruler??? Millimeters on a ruler are pretty small but using it to measure a tumor is an entirely different story. This type of growth in two months in considered significant growth. Given the growth of the tumors and the state of Rylie’s eye sight it’s time to start treatment. Which will bring us to our oncology visit and Rylie's new treatment plan. 

 Snuggles and some mickey mouse clubhouse with grandma before her MRI. 

And of course a nice nap on the way home!  

21 April 2014

VEP Test

Last Thursday Rylie's ophthalmologist sent us over to the University of Utah's Moran Eye Center for a repeat VEP Test. Rylie has had this test done once before and with the drifting her left eye has been doing lately the doctors felt it would be a good idea to repeat this test and see how things have changed. So we headed off to meet with Dr. Creel and have the test ran again. 

Well, the changes weren't good ones. Poor Rylie's eye function has changed pretty dramatically in the last few weeks. Dr. Creel said he has never seen such a drastic change in such a short period of time. We were not totally surprised there was a change but to see how drastic the change was almost takes your breathe away. It's scary to know just a little over 8 weeks ago the doctor told us there was a {TUMOR} to watch... And now in just a few weeks it has become very apparent this is a problem we can no longer avoid and we must fix soon! 

This first photo is of Rylie's first VEP test in February. The top line is her right eye (which is how a healthy optic nerve functions) and the bottom is her left eye. In February there was a slight difference, a difference that told them there was a problem but nothing to worry about yet.

This second photo is of Rylie's VEP test last Thursday. Again the top line is her healthy right eye and the bottom set of lines (the test was ran twice to confirm the change was in fact that drastic) is her left eye. As you can see there is a major difference over the last few weeks.

We head into another MRI tomorrow afternoon and then meet with oncology Wednesday to discuss what to do next...

For more information on VEP test(s) and the research Dr. Creel does click below for more information...

What is a VEP Test {click Here}
Visually Evoked Potentials By Dr. Donnell Creel {click Here}

14 April 2014

Sometimes...Life is hard...

Rylie had a follow up exam with her ophthalmologist on Friday. She has been struggling with her left eye drifting for the last several days and after speaking with the medical staff at Primary Children's Hospital they thought it would be best for us to have her checked out real quick. 

We were hoping for a more positive outcome but unfortunately the doctor feels like it is now time for us start a treatment plan. We were hoping for a patch or maybe some glasses but the doctor feels it will be best for us to get her started on chemotherapy. 

We spent the weekend trying to make sense of everything and trying to wrap our heads around the fact that our baby will likely be starting chemo within the next few weeks. But while we wait for oncology to call us we will focus on the positive, celebrate Easter with our families, enjoy some beautiful spring weather, and our little LadyBug's sweet smiling face. 

Sometimes life is hard. Sometimes life isn't fair. But that's life, the good,the bad, and the ugly... everything shapes us to the people we are and the people we will become. Please keep Rylie and our other NF friends in your thoughts and prayers. The strength these children have is amazing! They are tough little fighters and they keep us parents going when it seems like we can't go on any more. Thank you again for all of your love, prayers, and support. 

03 April 2014

One Step Forward, One Step Back.

Having a “sick” child is one of the most exhausting things we have ever been through. I don’t think we’ve had a moments rest since we found out about the tumor in February. Sure we sleep, but we toss and turn and worry about what may happen. It has been a constant roller coaster of ups and downs.  We feel like we take one step forward and then another step back. We have had some pretty great days and some bad days and this week we had another bad day.

Rylie has been blessed with some pretty amazing teachers watching over here every day while daddy and I go to work and this week they were so sweet to make us aware of a situation we had been missing. We rely on those guys so much… Rylie spends every day with them and just a few hours a night with us so knowing they are looking out for her is literally the biggest relief a parent could ever feel. Anyway, they have noticed lately that when Rylie focuses on an object her eye starts to drift outward, almost looking like she has lazy eye. Once we were able to talk with them and get a good grip on what has been happening we decided it would probably be best to call our Tumor Coordinator up at Primary Children’s.

Rylie’s tumor, an Optic Pathway Glioma, are typically slow growing tumors so they do not want to send Rylie in for another MRI because it has only been about 6 weeks since her last MRI and they will not be able to notice much growth. Even if there has been some growth it will be hard to tell on an MRI this early in the game, they have found 3 months is typically a good time frame to get the information they need so we are going to keep her MRI scheduled for the first part of June. However, what they do want to do it have her seen by her ophthalmologist again. Her ophthalmologist will be able to get a good look at her optic nerve and will be able to see if there are any changes in the appearance of the nerve. Her team of doctors has explained to us that she will always see her ophthalmologist before her MRI because an MRI may not always pick up on the tumor’s growth but her ophthalmologist will be able to get a close look at the nerve and will be able to see any change in the appearance of the nerve. Seeing the ophthalmologist will hopefully give us some answers as to why her eye is suddenly turning outward. We currently have an appointment scheduled for Fri. Apr. 11 up at Primary Children’s.

On a positive note… we are now a binki free household! That’s right Rylie gave up he beloved binki. We started last Wednesday and as of this morning we have gone an entire week with NO binki’s and no meltdowns… SUCCESS!!!