June 12, 2014 - Back to the hospital

Tye didn't get a fever after round 5 of chemo.  We thought we were going to be home until we left for San Francisco for his MIBG Radiation Therapy.  Well we were wrong.  3 days before we left Tye got a fever.  We took him to the ER at Primarys and they ran tests and sent us home on an antibiotic and said his counts were high enough that he would be able to fight the infection on his own.

Everything was fine until the next morning when we got a call from the hospital at 5 am saying that we needed to get to the hospital fast because his blood cultures were growing some sort of staff infection.  So back to the hospital we went.  After a couple of days of trying to find out what was wrong they found a blood infection in his central line and he was scheduled for surgery to have his line removed on Saturday June 14.

Roy was at the hospital with Tye that day and I was getting ready to head to the hospital when I realized that Max was not feeling well.  Since me and Roy were leaving on Sunday for San Francisco I decided to take him to the doctors office.  While at the doctors office we realized that his oxygen levels were in the 60's and they sent us to Primary's in an ambulance.  We could not get a hold of Roy because he was in the waiting room while Tye was in surgery.

Max at the Doctors office trying to get his oxygen levels up

Ambulance ride to the hospital

So at this point they got Max stable and admitted him to the third floor.  So we had Max on the third floor with pneumonia, Tye on the fourth floor with a bad blood infection and his line being removed and a flight to catch the next morning to San Francisco for Tye's radiation therapy.  That was a crazy night.  Grandpa stayed the night with Tye, Grandma stayed the night with Max, the rest of us had to get packed to go out of town and Tye's doctors were scrambling to get him stable to catch a flight to the hospital in San Francisco.  We ended up canceling our morning flight on Sunday to give Tye some extra time to get more antibiotics and flew standby later that night.  Abbie got us tickets and her friends at Delta got us on the flight and we were escorted to the flight by the pilot himself.  It all meant a lot to us.  We realized how many wonderful people there are in the world and how many people are so willing to help us.

We left Primary Children's hospital with Max still admitted and flew to San Francisco to check right back in to the hospital there.  That was for sure a stressful few days.  We wouldn't have been able to do it without friends and family coming to our rescue.  
  

May 21, 2014 - Chemo round 5

After surgery Tye had a few weeks to recover and then we were right back for another round of chemo.  This time the whole family was in Arizona for Ashlyn's high school graduation so Tye stayed with Grandma and Grandpa and they brought him to the hospital to start Chemo.

Ashlyn's Graduation in Arizona

The Gilbert Temple at night

Eli visiting Tye at the hospital!

Max visiting Tye at the hospital

Tye during chemo playing play-doh with Zoe

More Play-Doh fun

Trying to stay busy stuck in a hospital room.

Tye was in the hospital 5 days with this round of Chemo.  This was the first time he was threw up due to Chemo.  It seems like every round gets a little harder on his body.  Through it all he is still happy and content.  It takes it all one day a time.

We are so blessed that we were able to go out of town for a week and have family members and friends take such good care of Tye while we were gone.  He checked in the hospital on a Wednesday and we got home late Friday night.  He was happy to see his dad when he got to the hospital.

May 5, 2014 - Surgery

Tye had surgery to remove the tumor where the cancer started.  The tumor was located on his right side by his kidney.  He was in surgery for around 5 hours.  Surgery went well.  They were able to remove 99% of the tumor before they felt like they would be putting his kidney in danger.  After surgery Tye went to the ICU for 1 night.

Tye with dad right after surgery.

He was hooked to multiple monitors, an epidural for pain and a catheter.

Tye's happy place.

Feeling horrible but still smiling!

His giant incision.  Almost goes all the way across him.

Tye recovered like a champ and we were able to go home after 5 days in the hospital.  He would not walk for a while and could not sit up for weeks.  Overall he was still happy and wanted to play and keep up with his brothers.

April 12, 2014 - A Short Stay at Home

We were hoping for a longer stay at home this time but we weren't so lucky.  Tye started getting a fever and complaining of ear pain.  After not moving from the bed all morning and his fever not getting any better we brought him back to the hospital. So 4 days in the hospital, 4 days home and then back to the hospital.  No wonder everybody says the doctors and nurses become like family.  I think we see them more than our family at times.

Tye was not feeling well at all but as long as his brother and sister were right by his side he would relax.

Once again he liked the movie more than dad!

Tye didn't really get off of the bed at all for the whole weekend.  He still had an ear infection and mouth sores that hurt pretty bad.

After not feeling well for 3 days a new set of Legos donated to the hospital made his day.

Tye is finally feeling better.  Day 3 at the hospital waiting to make sure his fever doesn't come back.  With his immune system not able to fight anything on its own a fever is a good indication that he has some sort of infection in his body. 

The next step in our journey are scans.  We haven't checked how he is doing since he was diagnosed.  We are optimistic that he is doing great.  He looks better so we hope he is doing better.  We will keep everybody posted.  

April 4, 2014 - Chemo Round 4

This round of Chemo we were in the hospital 4 days.  Tye did great.  No nausea and still eating a little bit through the whole stay.  We feel so blessed that he has been doing so well.  We know for sure it comes from all of the prayers, fasting and thoughts that we are getting in his behalf.  The days and nights are long at the hospital but Tye does a great job.  He gets frustrated at times but overall he is really good.  One funny thing Tye has learned is that when he wants to get our attention he bends his IV cords so that they quit working and the monitors start beeping (Downstream Inclusion to be exact.)  He knows that we will stop what we are doing and come to him to look at why they are not working.  He will then kind of smile at us and let go of the cords.  It is cute that even with everything he is going through he just goes with the flow and has fun while doing it.  He is a great example to all of us.

Tye eating french fries and fry sauce.  I think he likes the dip more than the fries!

He likes feeling big and eating at his table on wheels.  He think the table is pretty cool.

Dinner and a movie.  How could things get any better.

 Zoe got to come to hospital after being gone all week to St. George for spring break with her cousins.  Tye was so excited that he would not let her leave his side.  Such a cute relationship they have.

Dad giving Tye medicine.  He takes it pretty well but always puts up a fight for a few seconds.

March 14, 2014 - Chemo Round Three

This round of Chemo we were inpatient for the full five days.  The Chemo that was given this round usually makes you very sick.  Tye was a champ!  He never threw up the whole time.  He actually was eating on and off.  None of the nurses could believe that he was eating.

Having some Oatmeal. 

After lots of night without any sleep... nap time.

Tye is always up for a visit from the dogs...  (As long as they don't get to close.  He is still a little bit afraid of them but is getting better.)   The people that take time out of their busy schedule and come up to the hospital are amazing.  I am so grateful that they do that for the kids.

Tye getting a visit from one of the therapy dogs.

March 5, 2014 - Stem Cell Harvest

Today we went to the hospital for Tye's Stem Cell Harvest.  This is where they run his blood through a machine and strip off the stem cells.  They will freeze the stem cells and then down the road he will get them back in order to recover from Chemotherapy.  He was such a champ.  He sat perfectly still for 6 and a half hours with only a couple of complaints towards the end.  They called him the dream patient.  They said they have to hold most of the kids down because they won't sit still.

Glad that day is behind us.  Now on to more adventures....

He was done with the process at this point and wanted to go home

February 21, 2014 - Second Chemo Treatment

Today we found ourselves back at the hospital for the next 5 days of Chemo.  Once again Tye did really well and we only had to stay one night in the hospital and then the next 4 days were out patient Chemo.  One of the days was a Sunday and so Zoe got to come with us to the hospital to be with her brother.  It was a great experience for both of them to get to be together for this.

Eating Some Lunch Together

Watching TV Together

Nap Time Together

February 14, 2014

Happy Valentines Day.......

We woke up to lots of Tye's hair all over his bed and all over his pajamas.  Not a very exciting Valentines present.  It was a hard day around our house.  I guess it hits hard because losing his hair was the outward sign that he is sick.

After only being able to take one day of big piles of hair all over our house we went to get his hair cut the next day.  Zoe let me know that when we shaved Tye's hair she wanted to cut her hair at the same time and donate it to locks of love for somebody else suffering from Cancer.  What a special big sister Tye has!  He loves her to pieces.  They are best friends.

Before Haircuts

After Haircuts

Best Friends with their new haircuts

Right after Zoe's haircut she was off to her soccer game

January 31, 2014 - First Chemo Treatment

Not only was this our four year old sons birthday, it was Tye's first round of Chemotherapy.  Overall he did very well.  Other than not wanting to eat much he was still running around the hospital room playing basketball with anybody that would play with him.

Now that the treatment plan was underway we realized that this was going to be our new normal for a while.  The treatments go from 1 year to 18 months.  It will consist of Chemotherapy, Surgery, Stem Cell Transplants, Radiation, and then 6 months of antibody therapy.  Each Chemotherapy round is 5 days in the hospital and then two weeks at home and then back to the hospital for the next round.

January 22, 2014

This day started out like any other day around our house.  Got the kids off to school and Roy went to work.  I had an appointment to take Tye to the doctor for what we thought were allergies.  Both of his eyes seemed swollen.  Other than that he was a healthy, active, happy two year old boy.  After our pediatrician looked at him she said allergies didn't seem to be the problem.  She consulted with other doctors in the office and then came back a few minutes later.  She said she didn't want me to worry but she did want me to go to Primary Children's Hospital later that same day for a CT Scan of his head.  At that very moment I knew something was not right.

Later that day I picked up Roy from work and we headed to the hospital.  We had the scan done and while we were waiting for the results to come back we both knew something serious was wrong.  The hospital staff was running around trying to organize a bunch of people to come down to talk to us.  A little while later we were taken into a room with a couple of doctors, a social worker and our pediatrician was on the phone.  At that time we were told that there were numerous tumors throughout his head and in his eye sockets.  That is why his eyes looked so swollen.  At that point they knew it was cancer but didn't really know what kind and to what extent.

We were admitted right away to the Oncology unit at Primary Children's and spent the next few days doing test after test to get the right diagnosis.  Eventually it came back that Tye has Neuroblastoma, a rare childhood cancer.

For sure a day we will never forget.