12/29/12 update

Sorry for the lack of updates. We have been a bit tied up over the last ten days with Christmas and having babies and such. Alex's treatments have been going well. He has been getting the maximum "safe" dosage of radiation. He has lost all of his hair but has accepted it. He doesn't seem to mind taking his hat off in front of people. The treatments do take a toll on him physically as he gets quite tired. They have taken him completely off the steroid so his appetite and cravings have gone away. He gets hungry but never knows what he feels like eating.  His sleeping at night has gotten better since coming off the steroid. At his last clinic visit his blood cell counts were quite low which puts him at risk for getting infections. He has to wear a mask when we go out which he does not like.
On the 19th, Alex's little sister Olivia was born. The delivery was absolutely flawless. Kathy did an amazing job! Olivia is absolutely angelic, which is exactly what we need right now. Alex loves her and she loves Alex.  Kathy missed a few days of radiation following the birth. Alex got a chance to show his Nanny and Grandpa what he does every day. He liked having them there.
A couple days before Christmas Alex and his siblings got a suprise visit from Santa, arranged by some good friends. Despite his hesitation Alex did actually sit on Santa's lap. It was a lot of fun. Christmas was a great day for all the kids. We are so grateful for all the friends and family that helped with shopping and donations. It certainly took some stress off of us. Alex said it was the "best Christmas ever!" He even got a day off from radiation.
So we are not quite half way done with the treatments. It has been okay so far but we know there could be rough waters ahead. We hope and pray Alex can stay free of germs and sickness. It can be difficult to avoid with a house full of kids. But we do respectfully ask any potential visitors to our home to please postpone your visit if you or anyone you've been around has been sick.  In the meantime we will try to keep the blog and Angels for Alex Facebook page up to date as best we can. Thanks again for your prayers and support. May you all have a happy new year!

Happy Holidays

Our family is truly surrounded by angels.  Words cannot describe our gratitude for the love and generosity that has been shown to us this holiday season.  There have been some tragic events unfold recently that make it seem like all hope is lost in our society.  But miracles happen every day that seldom get reported in the news.  We have seen of late how good people can be and we feel so much love.  In the midst of our despair an angel has been sent to us.  She is beautiful and perfect.  She is a miracle.  Her big brother Alex is strong and we are so proud of him for fighting hard.  He always reminds us when it is time for his medicine even though he hates taking it.  His hair is almost gone but he can find a way to laugh about it.  That is a miracle.  He is a miracle.  Your children are miracles too.  Make sure to treat them as such and give them a hug and kiss.  May you all experience joy and maybe a miracle this holiday season...

Baby sister...

Olivia Jayne Terry
Born 12/19/12 @ 6 pm
8 lbs.
20.5 inches.

Waiting for his turn for radiation

Primary quilt

Today at church Alex was surprised with this beautiful quilt the primary children and teachers made!  It even has that cozy minky material on one side. It really made his day knowing they were thinking about him and would do that for him. We are truly blessed with so much love and support!

Pictures

Our great friend Andrea, from Tea Tree Photography was so sweet to take our family photos for us.  She is amazing!  I just can't believe the great photos she got from our crazy session. Charlie wouldn't sit still for a second, James was having fun making funny faces for EVERY picture and Alex was tired and not feeling well. We are so grateful to Andrea for being so fun and patient with our crazy family.

Alex's quote of the day

Today after they gave Alex a can of Sprite at clinic I mentioned that I really needed a drink. He then explained in a very serious voice, "It's better to drink alone." That is what some would say. Blood counts were lower today but not anything they were worried about. It's still early on in the treatment so that will change. Tomorrow big sister will be coming to radiation so Alex can show her what he does. One more day and then off for the weekend.

Midweek update for 12-12-12

Today was Alex's 7th treatment and it went smoothly. It seems like they've figured out all the little tricks to keep his airway clear. He has a wonderful group of people taking care of him each morning. They help make sure he's happy going in which makes for an easier session. He was wide awake before we even got to the recovery room. As usual, he got a bag of Doritos.Alex also likes to turn the light off from the control on his bed while the nurse is trying to write notes. Another trick he likes to play is to hold his breath while they are checking his heart rate and oxygen and try to throw off the numbers. What a clown! Physically he feels ok, other than getting tired easily. In the next few days they will be increasing his radiation dose which will take more out of him. This and the temodar (the oral chemo) will weaken his immune system.  We hope he can avoid infections as much as possible for the duration of his treatment. His life has changed and he wonders why it has happened to him as we all do. But he is strong and will fight. As always, we are so appreciative of everyone's prayers, support and donations.  Alex truly has an army of angels looking out for him and his family. Thank you all.

This morning after being sedated with Doritos of course

Alex all dressed up for church

Help from Big Brother

Friday James came with us to Alex's radiation appointment.  Alex really wanted him there and we thought that it would benefit James as well to see what goes on there.  The life specialist at the hospital said that sometimes kids imagine some scary things happening when they don't know what's going on.  So we felt it was a good idea.  Alex really loved having James there!  He got to show him things and it was the first day of  going in without any tears, which helped with his breathing while sedated.  The treatment went so much faster! I think James had a really hard time while there.  Since finding out about the tumor, he has not wanted to talk about it and I think it may have just been too much for him at this time.  He got teary after Alex got his medicine to put him to sleep.  I asked him if he was okay and he said he was just hungry and wanted to be left alone. Hopefully he will be able to talk to us about it soon.
Dr. Thomson that does the radiation, lowered the dosing of the steroid even more!  He now takes it every 12 hours and it may be reduced even more on Monday if this weekend continues to go well. Can't wait til he is off completely and I get my Alex back!

Tomorrow we are cutting Alex's hair.  Just buzzing it as short as we can get it, rather than waiting for it to fall out.  Alex is actually really upset about losing his hair, he is afraid he will look to different and says he is never going to leave his room.  I told him that it's no big deal, we often give him a buzz in the summer. But honestly it is different this time.  I think I'm having a hard time with it too.  When he goes bald, he will look sicker and will look the part of  having cancer and that is one word I have been avoiding.

Almost done with week 1

After a rough first day of treatment, Wednesday was much better and Thursday has been the best day so far.  The doctors, nurses and anesthesiologists have been working hard to figure out ways to help Alex so he doesn't have breathing issues during sedation for his radiation treatments.  He is slowly warming up to the Radiation Therapy staff there at LDS hospital.  They are very good at what they do and are genuinely concerned for his well being.  Let's hope it continues to get easier.  One more treatment Friday and then we're off for the weekend.

Alex has also been doing well taking his Temodar (an oral chemo).  I have to get dressed up in hazard gear to mix it with apple juice since he can't swallow such a big pill.  But he takes it down like a champ.  It hasn't upset his stomach yet and we hope it doesn't.  The doctors are starting to lower the dosage of steroids so his  massive appetite and strange cravings and mood swings (hopefully) will start to go away.  His puffy cheeks should go back to normal also.  He has gained 8 pounds in the last couple weeks.  Today he had 3 small bags of Doritos while at the hospital and some boiled eggs from the cafeteria.  

After radiation at LDS today we headed over to Primary Children's for his clinic visit.  They were handing out Christmas stockings full of goodies today so he scored big there.  His blood work looks good as of today.  That may change as he continues his treatment.  He will be more susceptible to infections so we are practicing washing our hands a lot.  Charlie, Alex's little brother turned 2 years old today.  Alex got to go with Kathy and I to pick out presents for Charlie.  We'll celebrate tonight and look forward to a weekend free of hospitals after tomorrow.  

One Day Down!

SO glad this morning is all over!  During radiation the doctors had a hard time keeping Alex's airway open.  With his throat paralysis he isn't able to get rid of just the normal saliva so he coughs a lot.  Every time he coughs they have to make sure he is still in the exact position and readjust him, so it took a lot longer than expected.  Which made us really anxious waiting. He took a long time to really wake up. Hopefully tomorrow will go better.  

Tonight I just feel so blessed!  I have been so nervous about today with starting the radiation and the chemo. There are so many side effects and I don't want Alex to have to go through any of it!  This morning started off early since we had to check in at 7:30 at LDS Hospital in SLC.  My mother and father-in-law came to watch the other kids and to make sure they made it to school and my sister Helen came up to clean while we were at the hospital!  We are so lucky! We have had so much help with carpooling the kids to school and activities, dinners and sweet gifts for Alex to keep his spirits up. 

Alex hates to take medicine and now he is taking about 6 different kinds, some more than once a day.  He isn't able to swallow the pills so we have to crush it up and put it in pudding or jello but he can still taste it.  We added the chemo pill and antibiotic tonight and we were told that it does not taste good. The chemo pills are over $300 a pill so it is really important he doesn't spit it out. So I was nervous he wouldn't take it and nervous for when he would take it because of all the side effects.  He took ALL his medicine like a rock star!  We asked him how it was and he said Uh, not good but not too bad.  I couldn't believe it! We so needed tonight to go smoothly.  

Little bump in the road

Alex woke up around 1o'clock in the morning having a hard time catching his breath. We waited awhile to see if he would improve and after about 45 minutes, we decided we better get him checked out. We were worried that it could get worse.  Andrew's parents quickly came over and we headed out to Primary Children's E.R.  Once we were there he had a much easier time breathing and was back to his 'ol self. He was checked out by many people and had great vitals and we were able to head back home.
The whole time at the hospital Alex was starving and today's craving was deviled eggs! When we got home I fixed up a bunch, that he immediately downed them all.
After a nice nap we headed to church for a nice prayer meeting held for Alex. We couldn't believe how many people were there for it. It's just amazing to us to see all of the truely caring people there are, near and far away.

Decorating the Christmas tree

Today was a good day. Alex and I got to go out to lunch together. We received a Sizzler gift card anonymously and decided today would be a good day to use it. Every day Alex has some kind of craving from the steroid he is taking and can be quite grouchy until the craving is satisfied. Today he woke up wanting lobster! OK, if we were still living in Maine no problem finding a lobster, but we are in Utah and finding a lobster can be quite pricey. So for lunch we headed out to Sizzler to get that lobster. It was lots of fun and he thoroughly enjoyed his lobster, fries, strawberry lemonade and ice cream cone! Yes, the steroid also makes him starving ALL the time.

Tonight was almost like before the news of Alex's tumor. The kids were nice to each other and watched a movie and finished the night with decorating the Christmas tree, perfect!

12/01/12

We are absolutely blown away at how many people have viewed this blog in just one week.  There are over 3500 views as of right now.  We are lost for words as to how to express our gratitude for all those friends, family and people that don't even know us who have shown their support through "likes," prayers, kind words, positive energy and donations. We wish that we could respond to each and every one of you but there are so many.  Just know that we truly appreciate everything you've offered to us.  You give us the strength to keep going.  Several of you have expressed interest in a Facebook page so we have set one up.  You can access it by going to www.facebook.com/AngelsForAlex.  The updates will mostly be links to this blog but feel free to post comments and share anything you like on the page.
We are enjoying a quiet weekend free of hospitals and doctors before the real battle begins Tuesday.  Alex will have six weeks of radiation, Monday through Friday at LDS hospital in Salt Lake City, along with an oral chemo.  He will lose his hair after a couple of weeks.  Today he picked out a hat with skulls and crossbones on it of all things.  He is truly a strong little boy.  We will do our best to keep this updated throughout all the craziness.  Thanks again to all of you.

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!