Life

Life is full of distractions.  When you lose someone so precious to you as a child, nothing is important anymore. Life feels empty and just distractions are left.  Distractions that are used to just fill up your day, so you can go to bed and do it all again the next day and the next. Each day going by brings you that much closer to being with that person again.

I think the scariest thing would be for one to realize all they have in life are distractions. It's so important to give our Heavenly Father and our families and friends top importance because nothing else matters.

Slowly Ticking

It's been 4 months since Alex left his sick, little body.  Every day that passes I am one day closer to being with Alex again.  Time is slowly ticking away.....

  After Alex was diagnosed I knew there was no way I would survive this. He would be ok, doctors make mistakes all the time.  This is NOT something that would happen to my family.  It's so sad when it happens to others.  They are strong enough to handle it, won't happen to me because I'm not.  That was the mind-frame I had from the moment Katelin, my first baby was born. It is an instant love with my children. From the moment I found out I was pregnant, I was in love.

On April 5th we were told the cancer was growing even while on their best chemo for it. It hit me really hard.  I knew the prognosis but until that moment I fully expected that there was some kind of mistake of diagnosis or we would get a miracle and Alex would be saved.  I remember saying to the Doctor, so... he really is going to die?  You can't save him?  I'm sure he thought where the heck have you been during the last several months. I was so ANGRY and broken-hearted. I wanted to push all the computers in the office onto the floor and make everyone stop talking about it.  Why couldn't they just save him! Why has the treatment for DIPG not changed for over 30 years!  Why do kids with cancer get next to nothing for funding research? This shouldn't be happening he just barely turned 7. He hasn't done anything!  I just couldn't believe this was happening to us. No one thinks it will happen to their family. They expected he would live for another few months. That's it!  We had 3 months prepare Alex and the other children and ourselves.  We never got a chance to tell Alex and I don't think it would have been necessary.Alex knew a lot more than we gave him credit for. Alex died six days later on April 11th.   I knew my life without Alex would change me and would make me beyond sad. It has been even harder than I imagined.  When I felt his heart beat it's last beat, I physically felt mine tear and still continue to feel it every moment of every day.
Katelin and James were immediately picked up from school and brought home. I can still hear James wailing before he was even in the house.  His heart was broken. He lost his best friend, his little brother. Seeing that kind of pain from your children is awful!  I wish I could take their pain away. They got to see Alex while I held him in my arms.
Four months have past.  School is finally over.  We get asked a lot, how are you doing? We are not good. A lot of the time I feel it is too much to bear and there is nothing anyone can do to make it better.  Although one thing that helps is remembering Alex and seeing people doing things in honor of Alex.  It makes us feel like people really care about him and what he had to go through.  It's nice to see how he had an impact on others.
 We are participating in a couple 5ks.  One is for an organization called HopeKids. The walk/run is on August 3rd.  They are a great support to families with a child that has a life threatening illness.  They provide free activities for the families. Alex loved going to the movies they did every month at the Jordan Commons. The other one is A Cure Starts Now, they are doing a walk/run called the Muddy Cruddy on August 17th.  Should be lots of fun. We are hoping to get a good size crowd in honor of Alex at this one.  We will be wearing our Angels For Alex shirts or a red shirt if you don't have one and we ordered pins with Alex's picture on them. They raise money to fund research.  Which is so so important with DIPG, since they receive next to nothing in funding. Something has to change.  So many families are being effected. If you can donate or come for support we would be so grateful. We would LOVE to see the people who have been touched by Alex.

Angels

Alex Ryan Terry: Hero

Alex Ryan Terry was born March 2, 2006.  He came in a hurry, being born just 30 minutes after his mother arrived at the hospital.  He had an unconditional love of life and anyone he ever met.  He made an impression on all who crossed his path with his big brown eyes and sweet spirit.  He would often try to carry on a conversation with a total stranger.  Alex was wise beyond his years, not being satisfied with just an answer but always thinking about the why behind it.  He would always finish telling you something with the phrase "Know why?"
Alex returned to Heavenly Father April 11, 2013.  He left in a hurry but peacefully at his home, in the midst of a courageous fight against DIPG, a rare pediatric cancer in the brain stem.  He was supposed to have just a little longer with us but in typical Alex fashion, he outsmarted his disease and ejected before his plane went down.  He is a hero in the eyes of so many as he bravely fought and never complained.  He did not like the things he had to experience these last five months but he always found something to laugh and smile at.
Alex loves his big sister Katelin very much.  His big brother James was his best friend.  His younger brother Charlie will always carry small memories of his big brother.  His baby sister Olivia made it here just in time to make an earthly connection with him.  His parents, Katherine and Andrew love him so and would give anything to hear him call for them once more.
We love you Alex and will not be whole until we see you again.  For us it will seem like forever, for you it will be very soon.  You received a call from home and you answered it.  For that we are so proud of you.  Run fast and play hard until we meet again...  


Funeral Service will be held Tuesday, April 16 at the LDS stake center at 2535 E Newcastle Dr. Sandy, UT at 11:00am with a visitation from 10am - 10:45am.

In lieu flowers please donate to The Cure Starts Now foundation for pediatric brain cancer:
http://www.thecurestartsnow.org/

Yesterday we lost our brave Alex. We thought we had a little more time but today we witnessed a miracle. Not the miracle we wanted from the beginning but the one we have been praying for of late. That he would go peacefully, not in pain before the horrible tumor attacks his senses and leaves him trapped. He knew it was close. He spent his last night with his mother stroking his cheek. As he sat on the couch this morning he asked for everyone to be with him. He called his little brother Charlie over, kissed him and gave him his beloved blanket. He handed his medicine back to his mother instead of taking it like he always does. He looked ahead at something we couldn't see and went to sleep peacefully. It was too soon and not what we expected but it is a blessing. Angels were with him and now they rejoice at his homecoming. We love you Alex and will carry you with us always. You went from being my son to becoming my hero.

Alex and Andrew getting a chest x-ray

Alex picked an x-ray apron for Andrew to wear

Pictures of Alex

Alex wanted green eggs and ham for breakfast this morning. The ham was too hard to eat but he did eat a bit of the scrambled green eggs.
Alex got a special key from make a wish. It unlocks the wishing room in the wishing tower.

Some pictures

James

James and Alex have always been best friends. Since Alex has been sick he no longer has the energy to keep up with his big brother James. It's been really hard for both of them to try and find something fun that they can do together. This weekend we have had lots of surprises from friends and from special people who didn't reveal their name.
James has been having a hard time when Alex receives things from us, or from others in the mail. Today was his turn. He got a cool Jazz shirt in the mail from an anonymous sender. He was literally jumping up and down because it was his name on the envelope.
A BIG thank you to everyone who made our weekend so special!

Livy gets some big brother time

Livy was a bit fussy and Alex said he wanted to hold her. So I passed her over and she settled right down and smiled. She then looked like she was having a.serious conversation with Alex which ended in more smiles.

Time Ticks On

I am always reading things online that have to do with DIPG.  New clinical trials, what to expect and things from other DIPG moms. I am learning that no ones knows much about it.  There is no cure, but one girl was diagnosed seven years ago and still doing well.  She is the longest known survivor.  Although they didn't treat the disease any differently.  So some treatments work well for some kids and don't work well for other kids. Right now radiation is the best treatment.  It shrinks the tumor and gives you more time. In about 6 months they expect the tumor to grow and be unstoppable. Doctors give kids with DIPG anywhere from 3 months -12 months to survive. Alex was diagnosed in November. This is so UNEXCEPTABLE!  Out of the millions of dollars being spent on cancer research.  DIPG gets between 0-1% of it!  The treatment for it hasn't changed in like 30 years. I can't believe it! Why wouldn't they do more for the worst type of pediatric cancer? WHY?! I just don't get it.

That's enough ranting for today.  Alex is having a hard day and I guess it makes everything harder to deal with. He is sick to his stomach and has had a hard time walking. He gets dizzy being up and needs help with the simplest of tasks.  It worries me, this is suppose to be the "honeymoon" period. What does that mean for Alex? Time is against us and I feel like it is a constant battle.  I keep counting back to when he was diagnosed and think how much longer do we have?  How many more good days?  There's so much more he needs to see and do.  How are we ever going to show him everything in time? 

 We need a lot more time, I wish time could just stop for a while. But it won't.... no matter how much I wish it, it ticks on.

The past few weeks we have had lots of really good days and a few not so good. It really is a roller coaster of emotions. When Alex is doing well, everything in life seems so wonderful and when he is sick or hurting it feels as though everything is falling apart.
Alex has just discovered that he can order some really cool things on-line.  He ordered a plasma ball himself and enjoyed tracking the package, then of course recieving the package. He enjoyed it so much he has tried to find something little to order every day for the last few days. Here is a picture of Alex with his plasma ball, pretending to be an evil sorcerer.
The doctors have been slowly lowering the dosage of steroid and Alex is acting more like Alex again. I'm so glad, we have all really missed him.
Yesterday we had clinic and talked about some of Alex's new symptoms.  There is more paralysis on the right side of his face. When Alex smiles only the left side goes up and when he blinks his right eye is very slow to close or doesn't close at all. So this could be due to swelling because of the steroid being lowered or the tumor could be branching out and growing. They could do an MRI to see but unfortunately there wouldn't be any different they could do. We were reminded that all of this is to extend the quality of his life since there is no cure for this type of cancer. I can't tell you how that feels to hear.  My heart breaks everytime we are faced with the reality of this disease. I love all my children so much and the thought of Alex having to do this takes me to the absolute brink.
We are still praying for a miracle for Alex because that's what it will take to save his life. The doctors can't, so we are leaving it up to our Heavenly Father. Please continue to pray for him.

Sunny days

The last few days have been great! Spring is finally here!  Alex has had a little more energy and enjoys going outside again.  Today we went to the park, Alex flew his kite, walked around with his metal detector and played with his brother James and some friends. It was great! I'm hoping with all the walking and playing he will get some of his strength back.

Alex started two different types of chemo this week.  He was not very happy about having to take that yucky medicine again.  I find it hard trying to convince him that, it's okay and it's not that bad, just take it.  I can't bring myself to say those things to him when it comes to chemo.  I don't know that it will be alright and was very anxious about him taking these.  The chemo this time is a little more than twice as strong as last time and another chemo pill has been added. We were not sure how many of the side effects he would experience with taking these strong, toxic medications.  The first day he had to take 7 chemo pills! That night went fine and we didn't see any change.  The next morning he felt great and had lots of energy that he hasn't had in a long time.  It was a beautiful day and Alex wanted to be outside and he even rode his scooter a little bit!  It was such a relief!  He took his chemo that night and was fine til about 3 in the morning and was sick to his stomach.  He was able to go back to sleep for a bit and woke up happy. That's happened a couple more times of being sick to his stomach.  Today is the last night of chemo til next month.  His counts are expected to drop very low within the next couple weeks and should slowly recover and at that point will start another round.

Alex playing outside

Pictures from Alex's Birthday!

Alex's Birthday is Coming!

Alex's birthday is coming right up!  We are so excited and want it to be the best birthday ever!  I have been talking with Alex trying to see exactly what he wants, where he wants to go and what food he'll want for his special birthday dinner.  The only info I could get out of him is that he wants to go to Planet Play and do the mini-golf there.  It's a black light course so everything glows. So that's what we were planning on doing up until yesterday.  He has changed his mind and wants to just stay home and just have family over and play games. I was a little disappointed because I want him to go and have fun and experience as much as possible.  So I asked him why he changed his mind and he said that he is tired and wants to wait til he feels better to go to Planet Play. I know it doesn't matter really what we do or where we go just as long as we are all together and Alex is enjoying himself but I can't help worrying and panicking what if the way he feels now is the new good.  What if he never goes to Planet Play or any other fun kid place? He has to.  There is already so much he is missing out on and I can't stand the thought of him missing out on things to come.

Today was a clinic day and it went really well.  Alex had blood drawn and a check up.  We also talked about the chemo he will be starting.  He is starting what they call maintenance.  He will be taking the same oral chemo pills as before but the dosage will be a little more than twice as strong. Alex will only have to take it 1 week out of every month.  They are also adding a different oral chemo pill to the mix.  They are expecting his blood counts to drop very low about the third week of maintenance, then should gradually come back up.  Then it will be time to start the chemo again.

A great friend of mine, who has been an amazing support let me borrow a book called Running with Angels. In it there is a woman describing what it's like having a disabled child and I felt I could relate to it, although I am not quite there but hope to be able to one day.
She says: I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this....
When you're going to have a baby, it's like planning a fabulous vacation trip to Italy.  you buy a bunch of guide books and make your wonderful plans/  The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You learn some handy phrases in Italian.  It's all very exciting.
After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, Welcome to Holland.
Holland?!?! you say.  What do you mean Holland??  I signed up for Italy!  I'm suppose to be in Italy.  All my life I've dreamed of going to Italy.
But there's been a change in the flight plan.  They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence,famine and disease.  It's just a different place.
So you must go out and buy new guide books.  And you must learn a whole new language.  And you must meet a whole new group of people you would never have met.
It's just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills and Holland has tulips.  Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say,  Yes, that's where I was supposed to go.  That's what I had planned.
And the pain of that will never, ever,ever go away because the loss of that dream is a very very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Although I know I will never be happy about being in my "Holland" I have all ready seen some pretty amazing things. We have such a wonderful family of support.  They have literally stopped what's going on in their own lives and have reached out to help.  We have seen strangers who have lifted our spirits by cheering Alex on and donating.  We have come to recognize that there are people in our lives that we were meant to know, so we could be loved and supported through this. Though we have seen some wonderful things in "Holland" we are hoping we can catch another flight to Italy and we will be on the first plane out of here!

Finally some good news

Alex got his eyes checked to make sure his enlarged ventricles are not causing damage to his eyes or optic nerves. The doctor saidhis eyes look great and he has 20/20 vision!

Hospital stay...

Alex has spent the last 24 hours at Primary Children's Hospital. He had some increased headaches and nausea along with a high fever. They did an MRI which was going to happen on Thursday anyway. It looks like there is some decrease in the size of the tumor itself but the ventricles in the brain are enlarged,  causing pressure resulting in the headaches and nausea. He has been on a hefty dose of steroids which has helped relieved some pressure and antibiotics that have taken care of the fever. Today he feels much better and we are just waiting to be released which could be soon or not. You never know what to expect here.

Alex wore his cape to clinic, he said it makes him more brave:)

Thursday we had clinic.  It was a mostly great day.  Alex was nervous that he would have to have blood drawn and since his PICC line was removed last clinic day he would have to get poked and he was not looking forward to it.  He wore his special cape saying it makes him more brave.  Once they decided they didn't need blood this time, Alex immediately relaxed and made himself quite at home.  He suddenly had tons of energy.  Energy he hasn't had in a long time!  Alex was all over the place, in and out of the room, taking pictures with my phone, banging the oxygen tank with the bed rails. Before all this tumor stuff I would have been so disappointed with that behavior and would made him sit still.  But on Thursday I was so happy to see it!  He was acting like an active 6 year old! I have missed that so much!  He did so good we get next week off!
So the part of the day that wasn't so great is that Alex has bronchitis and is starting to get junk in his lungs. They did a chest x-ray and are pretty sure it is just from the virus and not from aspirating.  So that's good news.  He is on some antibiotics and seems to be doing better.  Alex's oncologist was showing him the x-ray pointing out his heart, ribs, collarbones and stomach.  Alex said hey I see my ham sandwich I just ate.  It was so funny and so like Alex!

Angel Fight

This past week a group of angels came together to fight for Alex.  This amazing group of athletes will forever be in our hearts.  Thank you Jake and Erin Kobielusz, Garrett Smith and Matt Sweatfield for everything you have done for our hero and our family.  Thank you CrossFit 22 and CrossFit Park City for hosting this event.  Thank you DFS Lifestyle.  Thank you to all the athletes that participated and to all the individuals, friends and family that came out to show support and donate.  Thank you to all the businesses that donated.  I wish I could name all of you.  Thank you Andrea Child for taking these wonderful photos.  This event was so special for Alex and the Terry Family in so many ways.  We feel so much love.  While Alex's illness has changed us forever, this army of angels has inspired us to be better people.  Thank you all...

"Angel Fight"  CrossFit 22 Feb. 2, 2013

"Throw down for Alex"  CrossFit Park City Jan 29, 2013

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some woman ache daily as they try and walk in them.
Some have learned how to walk in them so they don't hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in these shoes.

I saw this post and felt like I can really relate to it today.  I don't want to forever walk in these shoes.  I feel so tired and we have barely begun fighting.  I HATE cancer!  I hate what it is doing to Alex and the whole family.  I hate that Alex is missing out on simple fun things that he would normally be doing.  I want so badly for it to just go away and have everything back to normal again.  

Pictures of the last day of radiation