11/30/2012

Well today we finally got through the radiation simulation. Third time was a charm!  Since Alex has to be sedated  he is not allowed to eat before the procedure.  When you combine the steroid he's on with not eating that makes for one cranky Alex.  Talk about "roids rage."  Once he has a good meal in him he's much happier.  The steroid also is making him retain water and his cheeks are puffing out like a little chipmunk.  He had a good evening visiting with his Aunt Helen and Uncle Ross who stopped by for a visit.  Actual radiation along with oral chemo starts Tuesday.  Time to start beating the crap out of this thing! 

Alex waking up after simulation

Third time's a charm

Tomorrow morning we try again for the radiation simulation.  Hopefully everything goes smoothly and we will be able to start treatment Monday.  Today we had a clinic visit with the oncologist.  She went over the type of chemo Alex will be receiving and discussed the side effects.  The chemo he will be taking is in capsule form and since Alex doesn't know how to swallow pills yet, Andrew has to wear a mask and gloves to mix the inside of the capsule with a bit of apple juice for Alex. I hope it's not too gross, so he takes it easily.

Last night was a long night!  We have a baby monitor in Alex's room so we can hear him if he needs us.  Last night he was talking in his sleep and I had to keep getting up to see if he needed me, only to find him sound asleep.  He did wake up at about 2:30 AM and wanted a midnight snack.  He decided he need a pancake and sausage on a stick and some sparkling water.  It ended up being a nice time together.  He felt good and was wide awake and it was quiet with just the two of us.

With the little sleep we got last night, he is pretty tired today.  Here's a picture of Alex snug in his bed

Alex was scheduled for his radiation simulation today.  All was going smoothly til he got a nose bleed and they were unable to finish.  They sent us up to Primary Children's and got his nose cauterized, which was NOT fun. Poor guy! 

Tomorrow morning we go to Primary Children's to talk chemo with the oncologist and Friday we try again with the radiation simulation.

Update for tomorrow

We will be at LDS Hospital bright and early for Alex's radiation simulation.  There they will make a plastic mask molded to Alex's face and position him just right to prepare for the upcoming radiation treatments.  Later we have our homecare nurse Dylan coming to change the dressing on Alex's PICC line. Alex is excited about that, Dylan is awesome!
Here's a picture of Alex and Charlie, I caught them being sweet to each other:)

Alex's first stay at the hospital

Everyone was so great at the hospital. I think Alex thought it was pretty cool that he got to ride a bike inside and order whatever he wanted to eat!

Alex had a fair night last night but the two previous nights were rough. Andrew and Kathy were waiting for a call from the doctor to set the time up to bring Alex into the hospital. They were planning to get their Christmas tree up last night but Alex was too tired to do it. Maybe tonight will be better. Will post what the doctors say after the meeting with them. Keep Alex and the whole family in your prayers.

The Beginning

We would like to introduce to you 6 year old Alex Terry.  Alex is a bubbly, energetic little boy, full of life and fun loving.  He is a great brother to his older sister, two brothers and a wonderful son to his parents Andrew and Kathy.  Kathy is expecting a baby girl and is due in 4-6 weeks.  Everything was going along just the way it should for this wonderful little family when they received the most horrible news that any family can receive.     
A few weeks ago Alex's mom, Kathy thought he was not quite acting like himself.  He was less energetic, had trouble eating and could barely hear him when he spoke.  His mom took him to see the family doctor who told Alex, "You are a very sick little boy."  They found that Alex had an ear infection, sore throat, a nasty case of bronchitis.   Alex said, in his most enthusiastic voice, "I'm not sick! I don't feel sick!" 
After 2 rounds of antibiotics his ear infection had cleared up but he continued to be lethargic and his swallowing and speaking was getting worse.  Alex went to more doctor appointments with specialists and more tests and the answers started to come back. 
First they heard that he had a paralyzed right vocal cord.  This was concerning but treatable.  When looking up paralyzed vocal cords on the internet, it stated that many times the cause is idiopathic, a fancy word for not knowing what the cause is but the treatment is a simple procedure and things are relatively normal after a short recovery.  Before the appointment for the procedure could even be set, Alex's parents began noticing that Alex was having more trouble speaking and that his mouth was starting to droop on the right side.  They immediately called the doctors and they moved up an MRI that was scheduled to be performed later just to rule out a tumor.  That next day, Alex found himself in a big room with a big machine that made a lot of noises, lying very still while his parents and family prayed like they have never prayed before that this test would show no tumors and that Alex was going to have a full recovery.   
The news came back and it was not good.  Little Alex was diagnosed with a glioma, which is a cancerous tumor on his brain stem.  The most aggressive type of tumor in the worst of places.  
Life for that little family completely changed in an instant.  Kathy, Andrew and the kids found themselves going from being excited about welcome their 5th child into the world to praying for a miracle at Alex's bedside in the hospital, trying to decipher medical discussions that included treatment options, diagnoses and prognoses while still trying to accept the fact that their beautiful little boy was just diagnosed with a cancerous tumor that had a very grim prognosis. We have started this blog in hopes of helping the family with spiritual, emotional, and financial support. Please join us in lifting the Terry family up in prayer and our hopes for a miracle. If you would like to donate money to help the Terry family look for the PayPal link on this page.  There is also an option of donating locally at any Zion's Bank under the name Alex Ryan Terry.

As of today, the rare, aggressive tumor has advanced to his spinal cord. Awaiting options from the doctors.  Keep Alex in your prayers!