01 May 2014

What’s Most Important Matters.


A professor stood before his philosophy class and had some items in front of him.  When the class began, he wordlessly picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls.  He then asked the students if the jar was full. They agreed that it was…

The professor then picked up a box of pebbles and poured them into the jar.  He shook the jar lightly.  The pebbles rolled into the open areas between the golf balls.  He then asked the students again if the jar was full. They agreed it was…

The professor next picked up a box of sand and poured it into the jar.  Of course, the sand filed up everything else.  He asked once more if the jar was full. The students responded with an unanimous "yes".
The professor then produced two Beers from under the table and poured the entire contents into the jar effectively filling the empty space between the sand. The students laughed…

My sister-in-law sent me this story this morning... A perfect reminder of what really matters most in life! 

Now, said the professor as the laughter subsided, 'I want you to recognize that this jar represents your life. “The golf balls are the important things: your family, your children, your health, your friends and your favorite passions - and if everything else was lost and only the golf balls remained, your life would still be full.

The pebbles are the other things that matter like your job, your house, and your car.  

The sand is everything else - the small stuff.  If you put the sand into the jar first, he continued, there is no room for the pebbles or the golf balls. The same goes for life. If you spend all your time and energy on the small stuff you will never have room for the things that are important to you.

Pay attention to the things that are critical to your happiness.
Spend time with your children.
Spend time with your parents.
Spend time with your grandparents.
Take time to get medical checkups.
Take your spouse out to dinner.
Play another 18

There will always be time to clean the house and fix the disposal.
Take Care of the golf balls first--the things that really matter!
Set your priorities, the rest is just sand.

One of the students raised her hand and inquired what the Beer represented. The professor smiled and said, "I'm glad you asked". The beer just shows you that no matter how full your life may seem, there's always room for a couple of beers (or in my case wine) with a friend!

Audiogram... And a Frightening afternoon


One of the chemotherapy drugs Rylie will be on is Vincristine. Vincristine has a potential risk of hearing loss. In order to track how her hearing is doing throughout treatment Rylie was sent in for a hearing test, an Audiogram. This gives the medical staff a better understanding of where Rylie’s hearing is now then they will be able to track and monitor her a few times throughout this next year to see if there are any changes in her hearing.

Before taking Rylie up to Primary Children's for her hearing test mommy went in for a quick eye exam to get her contacts renewed. What was to be a standard check up turned into a scary day. After running a few of the standard eye tests my optometrist became concerned with the swelling in my optic nerves. After reviewing the possibilities if what the swelling could mean we got worried... Swelling in the optic nerve is what led us to find Rylie's tumor. To say there was immediate panic is an under statement. After discussing Rylie's current situation with the optometrist he went into complete panic mode. I was told to call my husband and immediate head to the Moran Eye Center for additional testing and if there were no appointments open to head to the emergency room. The concern was I too had a tumor. I don't think I have ever been so scared and completely panicked in my entire life. How was this happening? How are both my daughter and I going to get through this… at the same time? I immediately started worrying that I wouldn't be able to be with my baby when she needed me most and then a harsh reality set in. If I had a tumor it meant Rylie's NF was genetically passed down from me. I think that broke my heart more than anything. I felt so responsible. After speaking to Rylie’s doctors they felt there was no need for genetic testing and believed Rylie's NF to be a spontaneous mutation but if I had a tumor we had our answer... She got NF from me. I was literally torn up inside. That entire time all that was going through my head was this is my fault. My baby is going to have to go through hell because of me! Brett was heart broken and completely stressed out but he did great at trying to keep me calm. After calling our families we were able to get Brett's mom and sister to meet us up at the hospital to take Rylie to her hearing test so Brett could take me to see an ophthalmologist for a second opinion. They literally rescued us from a downward spiral. Having someone there to hug you and tell you everything will be okay is literally invaluable. We said it before but we will say it again- We Have the best family in the world!

Brett's sister took Rylie into her hearing test in which she passed with flying colors! They said she was a little rock star!  While Rylie was at her hearing test I was taken to IHC Salt Lake Clinic to be checked out. Thank god for Dr. Harrie! That man really knows his stuff! His office seen me immediately, no questions asked and they were so wonderful to ease our worries while they took a look at my eyes. After a few more eye tests and an ultrasound Dr. Harrie assured us I did NOT have a tumor. Although my optic nerves were swollen he felt it was nothing to worry about and the swelling and headaches could be contributed to the stress we have been under lately. It was such a relief to hear those words. For me to know I was going to be able me go focus all my attention on my baby was the biggest blessing of all but knowing I was okay was a weight lifted off all of our shoulders!

Thank you to all of our family and friends for being there for us last Friday. You all never cease to amaze us with all of your love and support- we will forever be grateful to all of you!

Oncology Appointment- The Chemotherapy Plan



The day after Rylie's MRI we were able to meet with Rylie's team of oncologist to discuss their plan for treatment. We were pretty nervous for this appointment. Although we knew Rylie was going to have to start chemo there were still so many unanswered questions- we just wanted answers and wanted to know what to do. Luckily for us Rylie's team of oncologist had already reviewed all of her test results and all of the recommendations from her other doctors so they were prepared with a plan. No wait= Happy Parents!

While we discussed Rylie’s treatment plan a specialist of Primary Children’s Child life department came in and played lego’s with Rylie- It was such a wonderful and welcomed distraction for her! 




On May 7th, two days after her 2nd birthday Rylie will begin a 12 month course of chemotherapy. On May 7th we will check into Primary Children's Hospital for an overnight stay.  Rylie will be taken into surgery to have a port placed and then after some recovery time they will begin her first round of chemotherapy. After the chemo is administered the doctors will watch Rylie for 24 hours and then we will be sent home to rest and recover. After that Rylie will have 2 more follow-up treatments in May and then we will move to once a month treatments for the next 11 months.

Luckily the 11 months will give Rylie a chance to live a somewhat of a normal life throughout the year. She will only miss 1 week of school per month and other than that the doctors are encouraging us to live a "normal" life with some modification and precautions of course.

Rylie will be on two outpatient chemotherapy drugs. Carboplatin and Vincristine. While the plan is for these drugs to shrink the tumor the also come with some very serious risks for Rylie...

Carboplatin has lots of risks but Rylie’s doctors will carefully monitor her throughout the year for any possible signs of distress or trouble. 

Carboplatin comes with the risk of:
-        - Nausea and Vomiting
-        - Fewer red blood cells and white blood cells and platelets in the blood… a low number of red blood cells can make you feel weak and tired, A low number of white blood calls can make it easier for you to get infections, and a low number of platelets can make you bruise and bleed more easily.
-        - Abnormal levels of salts (potassium and potassium) in the body
-        - Rash
-        - Metallic taste
-        - Hearing Loss
-        - Inflammation and/or sores in the mouth

Carboplatin comes with the most worry for us… After receiving her Carboplatin treatment Rylie will go on a lock down 7 days after treatment and will remain on lock down until day 14, or at least until her blood cell counts are back into what the oncology team feels like is an acceptable level.

Vincristine comes with the risk of:
-        - Hair loss
-        - Constipation
-        - Reversible nerve problems that can affect the way Rylie walks of the feeling in her fingers and toes
-        - Jaw Pain
-       -  Headaches
-       -  Muscle Weakness
-        - Numbness and Tingling
-        - Double Vision
-       -  Dizziness
-        - Low Blood Pressure
-       -  Liver Damage

Vincristine comes with the most visible changes for Rylie. She will lose her hair, a sure tell sign she is on chemotherapy.



And of course after a long day at the hospital we had to celebrate with a trip to Chick-fli-A!