All posts by Ira Hughes

Happy Birthday Audrey!!

Today Audrey would have been 7.  She was such a huge impact on me personally and the family.  She was the glue that held us together tightly.  Since she has been gone that gap she has left has been so huge.  We miss her smiles, her laugh, her need to always be touching someone, and her ability to be so happy even though she was going through so much.  Baby girl taught us so much just wish there would have been time for some more lessons before she left.

I was driving to the airport about a month ago and a song about having 5 more minutes came on the radio.  It totally broke me as my first thought was how would I spend 5 more minutes with my little girl.  What would you do with those precious minutes.  Would you talk, laugh, play or just have a long intense family hug.  So many options but unfortunately we will never have that chance to find out.  Do you have someone that when they are gone you are going to look back and say if I only had 5 more minutes.  Or if I could have talked to them one last time., or I missed the chance to say sorry or give forgiveness.  You have that 5 minutes today.  You have that five minutes to put down your phone and play with your baby girl unlike me.  So in honor of a sweet little girl that didn’t get to celebrate her birthday today go make that call.  Go love on your babies.  Do it now as later is never guaranteed.


Life after Audrey’s Passing

It’s been a long time since I posted.  Many things have happened since Audrey past and everyday feels like we are trying to climb a mountain just to get through.

At Audrey’s service so many people showed up to honor our little princess and it was an amazing celebration of life.  Audrey was there with us you could feel the energy.  So many people worked so hard at creating the perfect day and they did.  Following the ceremony we were able to connect with some friends and family and just hangout.  A neighbor gave us some fireworks to shoot off as Audrey loved it so much when we used to do that.  But he didn’t just give us the run of the mill fireworks they were awesome.  Just as we finished up with sending up Audrey a sky lantern the police showed up.  Turns out we had gotten 9 or 10 911 calls from our display.  Audrey would have been proud.  Everything worked out fine when we explained what was going on.

I have also posted my words from the service.

Our good friend the guy inside Clark the Cub came to the services and we told him about attending the NLDS game.  He asked if we would be interested in attending the NLDS game at Wrigley between the Cubs and Dodgers.  Of course the answer was yes and that Wednesday we headed to Chicago.  It was hard to go but a good distraction from the hurt of seeing all Audrey’s stuff around the house and not seeing her so we went.  It was a total blow out win for the Dodgers which was a bummer but so great to be in Wrigley and getting loved on by Clark the Cub, Jaye Maddon and Tom Ricketts one of the coolest baseball owners in history.  Tom found out Cole was at the game and gave him a signed 2016 World Series baseball.  It meant the world to Cole and to us.  We spent Saturday in the Museum of Science and Industry.  Cole was in heaven.  He loves museums and just soaked in all the amazing things it had to offer including a tour of a U-505 U boat that was captured during World War II and is now on display.  That evening we got to know the guy inside Clark a little better during dinner and watching the Astros win the ALCS to move on to the World Series.

After already being at the final game of the NLDS and the final game of the NLCS and knowing friends that work for the Astro’s we thought let’s try to go.  Not expecting anything we started reaching out and were pleased to get an offer to attend game 5 of the 2017 World Series.  If not the best game in World Series history it has to be one of the top games ever.  5 hours and 13 minutes long.  Most home runs hit and most pitches thrown in a World Series game.  The game was on Sunday and it went well into the night.  I think the game ended after 1AM and Monday was Cole’s Birthday so he technically turned 10 at the World Series.  While in Houston we were able to see a few local friends.  It was a quick trip so didn’t get everyone in that we would have liked to.  Stayed with an amazing family and cemented some lifelong friendships.

After coming home and watching the Astro’s take the series in game 7 we were left with the void of no baseball.  This had been our distraction but was no longer there.  I have to say it was notably harder to get through the days without baseball to look forward to.  We all started finding different things to fill our time.  Cole’s new love for baseball has been fun to watch.  We got him some good equipment and he has been playing baseball in the front yard almost every day.  Practicing hitting, fielding and playing catch.  He wants to sign up for baseball in the spring and since he has never played we are working on the basics to give him at least a chance in the spring.  I have started playing video games again to keep my mind busy when it’s to cold(relative in Arizona) or dark to work on projects around the yard.  Melissa has been doing her gardening and it looks amazing.

Holidays suck for us right now and I hope they will get better as the years go by but right now doubting that.  Thanksgiving was spent with friends that know we were just trying to get through.  For Christmas we decided that it’s time to get my overdue dental work started.  I have known for 2 years I needed a full mouth restoration done and my braces where step one of that process.  When we got back from L.A. I started getting quotes from Doctors for the full mouth restoration.  Turned out way more than I had expected.  After thinking through it and knowing there was no way I could pay what they wanted I started looking outside of the US.  I was able to locate a very good dentist in Cancun Mexico that specializes in what I need and was 1/3 the cost of the US dentist.  Now I just needed a week or so in Mexico but because of all the time off for Audrey I knew I needed to work so the only time was the Christmas.  So tomorrow we head to Cancun for our Christmas\Dental vacation.  We are excited to go but we are missing Audrey being with us on all our new adventures.

As I try to process the dark place that my brain goes on many occasions it leads me to a lot of introspective thinking that forces me to deal with my fragile mental state in life right now.  Through this thinking I have been distilling a number of life directing thoughts.  A couple things have stood out.  The phrase “life is for the living” is an important one.  During Audrey’s fight we focused as hard as we could to live everyday as we didn’t know how few there were left with her.  We played hard.  We laughed hard and we loved deep.  Since her passing the void she has left in all 3 is deafening.  It’s hard to play and be happy.  It’s hard to laugh and not feel guilty and it’s hard to love when your heart is so shattered.  We are at a pivotal place in life right now and we are forced to choose which direction the rest of our time on earth will go.  We can choose as some do to let this void invest our lives and slowly rot us from the inside or we can choose to start finding ways to climb back from this rocky bottom and play hard until it feels right again.  Find ways to laugh until our sides hurt until it feels right again and slowly collect the shattered pieces of our hearts and put them back together one piece at a time.  Not saying it’s this simple but these are the core pieces of the simple plan.  Every one of us has voids in our life’s caused by things in and out of our control.  We can either choose to let them eat us up or we can choose to push past them.  Life is too short to not live hard, laugh often and love deep.

My part from the Celebration of Life

Wow look at all these faces.  Every one of them Audrey has had some kind of effect on.  5 years and 11 months ago today a little, beautiful, feisty bundle of energy came into this world.  From the moment the first doctor looked at her the medical journey began.  When we were told she had a spinal condition we thought that was the hardest thing we would ever hear.  We soon learned that every step of the way we would hear the hardest thing we have ever heard get beat out by the next hardest thing we have ever heard.  After 58 Weeks of Chemo, 25 treatments of radiation then 12 more weeks different of chemos followed by another 4 months of monoclonal antibody and chemo the fight is over.  We didn’t get the total outcome that we wanted.  But what we did get is what he are here to celebrate today.  We got 836 additional days after diagnoses.  From the very beginning we knew what the final outcome would be but hoped for more.  We knew every day was precious and that tomorrow wasn’t promised.  We chose early on to make the most out of each of those days and to maintain a strong family unit.  We lived every day as much as we could.  A good part of those days were stuck inside a medical building of one kind or another.  Those could have been considered wasted days if it wasn’t for the amazing medical staff that walked along side of us through it all.  Whether it was the nurses helping us breakdown what we were learning, helping us play jokes around the unit or the child life was helping us play tricks on people or setting up a scavenger unit when she just wanted to give up. These medical staff here, in Houston and in California surrounded us with love and caring. We of course can’t forget the cafeteria friends we made too.  In those 836 days of fighting we got some play in also.  Riding the tricycle around or playing at the park when she was able she lived.  Camping, swimming, meeting Clark the Cub, throwing out the opening pitch at Wrigley.  Going to Honduras for Christmas and Disney for make a wish or Princess Fairland as Audrey called it.  Living in Houston and LA and all the friends made along the way.  We value each of those relationships we have made so much.  Being her Dad was amazing.  I got to watch as she stole the heart of each person she encountered.  It only took a few moments of being with Audrey to know that you loved her deeply and that no matter how bad you think things are if she can be this positive in her situation than you can to.  She exemplified what it truly looks like to live life to the fullest and that light beamed from her.  I miss her big cheesy smile, her thumbs up, and her riding on my shoulders.  I miss the way she greeted me each morning and asked how I slept.  I miss coming home and her being excited to see me.  I miss her cuddles and her following me around the house like a lost puppy.  But again all of those things were only made possible by her willingness to push on regardless of the situation.  Each of us has it in us to make today count for us.  To live today until tomorrow becomes today and live that day too until the tomorrows stop coming.  Each of us owes it to Audrey and to ourselves to live by her example.  Audrey had such a short time on earth but made such a huge impact in those short 5 plus years.  I believe her full impact has yet to be realized as her legacy lives on.  I kind of see Audrey as the key to unlocking something big in this world.  What that key will open only time will tell but you know if it’s an Audrey thing it will change the world.


In closing I just want to thank each and every one of you for being a part of our journey.  You have all played a part in this amazing story.  Thank you for all that helped make this happen today and for all of you that helped us walk when we couldn’t.  Sat with us as we cried or simply took care of the daily things we couldn’t get too.  The outpouring of love from our Neighbors, Family and friends cannot be over looked.  We still have a long way to go but today is one more step forward in our recovery and building our new future.  Please take some glitter when you leave and keep it or spread it and think of Audrey each time you see it.  Also please email your special memories to

Thank you.

Audrey’s earthly journey is over

Audrey past on September 29th at 2:35PM MST.  She had Cole, Melissa and I around her as she took her last little breaths.  It was quick and peaceful.

The Celebration of Life service for Audrey will be held Saturday, October 14th at 10 am. It will be an outside service at Discovery Park in Gilbert, AZ., at the Granite Ramada near the lower lake. Just look for the purple balloons! Audrey loved the outdoors! She loved to camp with her family. So bring your lawn/camping chairs, your pop up canopy for shade and some of your favorite memories of Audrey to share. (Limited seating will be available for family and out of town guests). Some of Audrey’s favorite foods (hot dogs, watermelon, pickles ) will be served following the service.

Thank you to all of those who have followed us along this tough Journey.  Sorry it has taken so long to get this update out.  The last 12 days have been hard as I suspect they will continue to be for some time.


The end is near

Its been 10 and a half months since we found out Audrey’s cancer had come back.  They said we most likely wouldn’t make it 6 months and almost certainty not a year.  Looks like they were wrong on the first part but not as much the second.  Audrey was doing well in her trial in Los Angeles and actually starting to look better.  Then she took a quick turn for the worse.  She started complaining of being dizzy and getting headaches on the 25th of July.  I took her to the ER on July 30th because I couldn’t get her headaches under control with what I had.  That next morning at 5AM she had her first focal seizure.  I called Melissa and told her to get to the hospital quick.  She got there at about 6:30 and Audrey was still having the seizure and her entire right side of her face had gone limp.  Her right eye was completely dilated but she was being so goofy and wanting to play.  at 6:50 she went into a full brain seizure which caused her to stop breathing.  They called a code blue at 7AM.  They got her body through but her brain never fully recovered.  She was in and out of seizure the next week while they tried to identify what was going on.  They were never able to 100% say what caused it but it was either the Phase 1 trial drug that gave her cerebral edema or the cancer in her brain irritating it enough to cause the seizures.   Either way it had done its damage and left her almost completely unresponsive.  On the 6th of August she had a long seizure that took a lot of rescue drugs to stop.  Once it stopped her face twitched for another 14 hours and they told us she would pass that day or the next.  At that point we chose to give her CBD cannabis oil and her seizure stopped within a minute of getting the oil in her mouth.  She finally relaxed and went to sleep for 16 hours or so.  We decided in that moment that we wanted her to fix this journey at home.  We had some friends identify some air ambulance companies and I went to work getting it setup and getting the medical team on board.  12 hours after telling her team we were leaving Melissa and the kids were home.  I still had to back the van in the house we were renting and drive home.  I got home safe and sound the next morning at 5AM.  As the doctors had told us it would be soon we got her settled in and expected it to be quick.  Well it seems that they forgot to tell Audrey.  She rallied as she always does and the steroids she was on for the brain swelling left her with an insatiable hunger.  She but on 5.7 pounds in 2 weeks.  We went and saw her oncologist at Phoenix Children to just get an idea of where we were in the final days.  He said her blood counts and chemistry looked great and still didn’t understand why she was unresponisive.  It seems to stump everyone.  She went on this way for about 4 weeks and on Labor day she had another severe seizure that has lead to her being completely unresponsive.  She no longer says anything and can’t eat any more.  She hasn’t had anything to eat in almost 2 weeks and is slowly fading.  We keep her comfortable and do our best to push off the seizures at any sign with Ativan and Morphine which a few extra rescue meds when needed with the entire focus on being comfortable and pain free as she slips into the arms of Jesus.

I always knew the end would be the hardest part but I just never expected the final days of being incapacitated would be so hard.  Watching her slowly slip away and thinking each time her heart rate goes up or down it’s time is just tearing us up.  The switch from fighting to just supporting has been so hard.  Now that we know there is nothing we can do and she no longer has any quality of life left we beg Jesus to come get her yet he doesn’t.  We kind of think that Audrey can see the tunnel of light with God calling on the other side and she is just raising her hand and saying I will be there when I am ready and she isn’t ready.

September has been designated as pediatric cancer awareness month to raise awareness of how little there is in funding and research that is dedicated to our kids.  I created a small video to try and help raise this awareness.  I am including the Facebook link and YouTube.  Please share as it’s our small way of helping.

Thanks for continuing to follow our journey and love your babies every moment of every day as you don’t know when that wont be an option any more and it comes quick.

Facebook link if you are on Facebook is


And if not you can check it out on YouTube and some other cool videos of Audrey.

Cancer never sleeps

Since we left for California we have been very busy in our fight.  Audrey was accepted into the trial for Olaratumab a monoclonal  antibody that has been found to work well at slowing cancer progression.  The antibody will be paired up with a high dose of Ifosfamide chemo to try and stop progression and hopefully even start killing the cancer.    On the 25th of April Audrey got her first dose of Olaratumab and then her second on the 2nd of May.  The first cycle is just the antibody to see how she takes it then we start with the plutochemo in addition to that in cycle 2.   We even squeezed a trip into Disneyland in between the doses and had the best day we have had in a very long time.  Our experience at Disneyland was way better than our make a wish at the magic kingdom as the wheel chair access and Disable Access Service helped make for a easier day for us.  The cast members were also all very accomidating.  They even reserved us a special spot to watch the electric parade.  After the second does of the antibody because it isnt supposed to be too toxic they let us go home to Arizona for a week while we were waiting for the second cycle to come.

Our time at home was awesome.  We got a chance to get caught up on yard work, gardening, bill paying and I even built a new quadcopter that a friend already had all the parts for.  It was a relaxing week but it was over before we knew it and we had to pack up and head back to California.   Unfortunately Audrey’s health had taken a big turn for the worse.  On day 4 of being home she started not wanting to eat and occasionally throwing up.  We thought she was just constipated and tried cleaning her out.  She wasn’t looking any better so we took her to the ER at Phoenix Children’s and they felt she was stable and might have just caught a stomach bug.  I knew that wasn’t the case and called our doctor in California.  They decided we needed to get back to see them quickly so we packed up and left early on Thursday May 11th to head straight to the Children’s Hospital of Los Angeles.  We made our appointment time and they checked her out.  They gave her fluids because she was slightly dehydrated but felt she was not well but stable enough to wait until her already scheduled MRI the next morning to see if the cancer was the culprit.  We got our scans done and things went well but she wasn’t feeling very well at all and sleeping pretty much non stop at this point.  We headed back to the apartment we have rented to wait for the MRI results.   MRI results came in and they told us to get the the ER as quickly as possible and that the Neurosurgeon team would be waiting for us.   It turns out all of her current symptoms were being caused by hydrocephalus or a build up of fluid on the brain.  They thought that the cancer has possibly grown enough to clog the vents to the spinal cord causing the build up of pressure.  They started giving her Dexamethasone a strong steroid to combat the swelling and ease the symptoms and admitted us into the hospital to decided what they were going to do.  After a few doses of the steroid she started waking up and looking much better so the team decided to hold off the emergency surgery until Monday when they could have a full team.  Through the weekend she struggled with nausea and headaches as the pressure continued to build.  On Monday they placed a shunt which is a tube in her brain that goes to a one way pressure valve that connects to a tub that allows the fluid to drain into the open cavity of her abdomen.  Everything seemed to go OK but she still didn’t feel all that well and was very weak.  Tuesday went OK but she still didn’t seem to feel well but was making progress it seemed.  Wednesday came and they took the bandage off and said as soon as she poops we can leave as she hadn’t gone in over a week at this point.  As Audrey and I were watching YouTube videos I saw her eyes start to bounce.  I asked her if her eyes felt weird and she said “My brain is controlling my eyes and I can’t stop them”.  This freaked me out and I hit the emergency button.  It had stopped by the time she got in there but started back up 2017-05-15 14.09.11again.  She called the floor doctor and after she evaluated Audrey she called for a STAT CT.  We got Audrey mobile quickly and headed off to CT.  I instantly saw on the scan the fluid build up was back.  Audrey wanted to go to the playroom while we waited for results so we did.  Next thing you know the nurse quickly came in and said we needed to go right away and the neurosurgeon was wanting for us in our room when we got back to poke a needle in her head and drain off some fluid to relieve the pressure.  Audrey had started throwing up by then and as soon as they pulled the fluid she felt worse.  Next thing I know the doctor and nurse were getting us ready to head to the OR.  She needed an antibiotic which took a while and the nurse was running with us down the hall hanging it while we rushed to the OR.  They needed to get back in and see what had failed.  After about and hour and a half the surgeon came back out and said everything things was OK and he couldn’t tell us exactly why it had failed but they put a lower pressure valve in this time to make it easier to drain.  After the Neurosurgeon team and oncology team met they think that the cancer that is lining the brain is causing the pressure to build up in a very different way than normal and is why the first valve caused the problem.  After surgery she looked very good and much more awake.  The next day was pretty uneventful and then they discharged us so we could go back to the apartment on Friday.

During all of this craziness somewhere along the way Audrey’s liver took a hit from one of the medications and we can’t seem to figure out which one.  It caused her liver enzymes to go 10 to 15 times the normal which is pretty bad.  This is keeping us from starting chemo and now that we have the brain better under control we still have to wait for the liver to come back down.  At this point we need her ALT to be under 105 and it’s now down to 289 so still a good bit to go.  All the time the cancer is growing and making it harder to keep fighting this already tremendously difficult fight.  She is now much weaker than she was before the brain build up but getting slightly stronger everyday.  We go back in for testing tomorrow for the liver in hopes to get started on chemo as quickly as possible.

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Easter 2017

Wow!  I can’t believe an entire year has gone by and we are back to Easter again.  Easter last year was the first holiday since we started that we didn’t spend in the hospital.  When we got back from our Make A Wish trip we met with our Oncologist and she said she no longer felt comfortable giving Audrey chemo because the scan showed potential growth.  We told her we had already consulted with our doctor from Houston and he said it was OK to do another 2 cycles and scan again to see if anything is changing.   She refused to continue treatment stating Audrey’s health was at risk.  Guess she forgot Audrey has cancer. Though we aren’t in the hospital this year we are traveling to Los Angeles to meet a team there to hopefully qualify for a phase 1 trial that might help prolong Audrey a bit more or if we are super lucky get rid of the cancer.  Since we got back from the Make A Wish trip we have been applying for trials all over the country.

Since then we have been talking with doctors all across the country and discussing what we can do.  It’s been 8 weeks since her oncologist denied her chemo and we have been chasing every possible angle trying to find other options.  We have looked at and been denied for clinical trials in New York and Chicago and are now heading to L. A.  There is an experimental phase 1 trial for Olratumab and High-Dose Ifosfamide chemo.  We are very much hoping to be accepted and start treatment as soon as possible.  The good news on this trial is if we are accepted and it shows progress we could at some time transfer our trial back to Phoenix Children’s Hospital where we are now going for care while in Arizona.

What an appropriate day for us to leave.  Easter Sunday.  As we celebrate Jesus rising from the grave and covering our sins we will be heading out of Phoenix and rising from the ashes into the city of angels Los Angeles.  Praying that all the closed doors are leading to the right open door.  We are trying to cherish every moment while fighting through the reality of the most likely outcome.  How do you get past that reality?  How do I walk Cole through this reality?  Those are the questions that just scare me.  I continually have to catch myself worrying more about the what could happen then what is happening now.  I can dwell in my own pity sometimes while totally busted and broken and miss whats right in front of me. Or I can put off grieving until it’s time to grieve and enjoyed every moment between now and then.  What if we all lived our lives that way?  How would that change us and our view of whats important?  This family of 4 continues to stay a family of 4 as long as we can.  We will continue to seek out treatment anywhere we need to go and make friends and memories along the way.

Look at California here comes Audrey.




Make-A-Wish trip

Well we had one heck of a time in Florida. We had to leave the house super early but got 1-2017-02-26 06.08.22picked up in an amazing pink stretch hummer from our friends at Jet Limousine.  Once to the airport everything went smooth and we got on our flight bound for Orlando.  Once we arrived we had a car waiting for us at National car rental and they said just choose any car in the full size row.  We picked the Charger and it was a fun car to1-2017-02-26 16.14.19 drive.  Shortly after that we arrived at Give Kids the World which is the resort that is for wish granting agencies to send their wishers for a Orlando experience.  The ticket package you get is 3 days for Disney, 2 days for Universal Studios and 1 day at Sea World.  We plan was to spend all 3 of our Disney days then decide from there.  When we arrived our room wasn’t ready because they said they were making it extra sparkly.  Best excuse I have heard yet for not being ready.  We were hungry so we headed over to the dining hall and grabbed some lunch.  It turns out that Boston Market, Papa John’s and Perkins are the sponsors for food.  So we had some 1-2017-02-26 16.56.32 Boston Market for lunch before going to explore.   They have a carousel open all day everyday so we started off by riding that.   By that time our room was ready so we got checked in and headed off to our Villa.  Cole gives a great tour you can watch on YouTube if interested.

After getting settled the kids and I went and played a bit while Melissa got settled into our 1-2017-02-26 18.04.50awesome villa.  We rode the little ride they have and played in the arcade area.  Then we played a round of miniature golf and discovered all the fun things that happened once you hit your ball in the hole.  There were some good surprises.  One of the holes was a cave and when you hit it in a thunder sound happened and strobes went off with some mist.  After that we grabbed some dinner then headed over to the playground where they were having a sugar party and the largest 1-2017-02-26 17.25.00game of Candy Land ever.  The playground has a life size version of the board and we pick cards and go to the right space.   It was a great start to the week.  Cole also did a great tour of the Give Kids the World Campus here on YouTube.

First day to spend at the park Audrey started her da1-2017-02-27 08.55.36y off with some pancakes and yogurt in bed. Then we met our friend Kile at Hollywood studios so that we could start our Frozen focused day. We walked around a bit and ended up over in Pixar so we rode the toy Story ride which was awesome then went to the Frozen show. After that we stopped off and saw the Frozen show. It was pretty amazing. Then we headed over to see Olaf. Audrey fell asleep so Cole, Kile and I went and rode Star tours. The picked Cole as the rebel spy and he was all excited to get put on the screen. Then we went and saw Olaf, Mickey and Minnie. We had done everything we needed at that park so we headed over to Epcot to do the Frozen ride which was good and meet Elsa and Anna. All of that went very well. We wondered a bit after that and ended up riding the test car ride twice at Audrey’s request then us boys went and rode the rocket ride and we picked the orange (more intense) style. Cole barely made it through without throwing up. Then just before heading out we did the earth ship ride which is the slow ride inside the big ball.

The second day at the park we went to the Magic Kingdom and it was crowded. At least we get to get in the fast pass line on every ride and the cast members were amazing. Started the day off right with meeting Mickey Mouse and it was fun to watch him talk with Audrey and we caught the dance party too. Then we made our trip around the park counter clock wise and got to most of the rides other than tomorrow land. Audrey rode everyone including splash mountain that Cole didn’t ride. That girl has no fear!   The next day we planned to go back to the Magic Kingdom to finish up tomorrow land and ride some of Audrey’s favorites again like the little mermaid.  We rode the haunted house twice, peter pan twice and the little mermaid twice at Audrey’s request.

Our last day at Disney was great. We started a little later as we were tired so got moving a little slower. We headed to the parks but stopped at a special discount store along the way called casting connections. You have to have a cast member with you to go in. We had Kile of course. We got a number of nice Disney things at hugely discount prices. The. We got to the Magic kingdom about noon. We saw snow white so we stopped by and got a picture with her. Then we headed to Tomorrowland to finish up what we missed the day before. We rode buzz lightyear ride and then went to the laugh factory. Cole got chosen to do jokes during the show. It was a lot of fun. Then we rode the rocket ride. After that Melissa, Cole and I rode space mountain. It was Coles first real roller coaster. He was scared but did great. Audrey and Kile rode the people mover while we did that. By then we were hungry so Kile suggested since we on our wish we should see if one of the most reserved restaurants be purchased guest would let us in. We walked up and asked and they said sure just give us a minute to get your table ready. With in 5 minutes we were being seated. It was beautiful in there and apparently the only place to meet the beast which we did after dinner. The food was very good and they had beer which was very good as well. After dinner it was getting late so we made apparently plan on what rides to hit before close. We decided the be our guest story, 7 dwarfs mine train, Aerial and Peter pan. We ended up riding the 7 dwarfs train twice and stopping to ride Winnie the pooh along the way that she also decided she wanted to ride twice. Then we still had some time soon we rushed over to ride thunder mountain before close. She liked that one a lot too so we finished our Disney trip by riding it again before leaving.

The next day was a day to rest and just 1-2017-03-02 11.02.08hangout at Give Kids the world.  The kids and I decided to let Melissa sleep in so we headed out to play a bit and grab some food.  We decided that it was a good day to have Ice Cream for breakfast.  We brought Mom back some real food though.  After that we decided it was time for some fun at the playground then headed over to do some fishing.  After that Melissa met up with us and we spent the rest of the day in the pool. Audrey signed her star and put it in the star box for the star fairy to hang on the wall so she will1-2017-03-02 12.36.21 always have a place at Give Kids the world. After that we took naps then headed down to enjoy a little Christmas and hangout with Santa . Got the kids to bed fairly early so we could enjoy a day at Universal studios the next day.



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Universal was a blast.  We had no idea what to expect as we knew nothing about the park.  We heard the Harry Potter stuff was cool and the train between was a fun experience so we made sure we had that on the list.  We started in the Adventure Island side.  We went Counter clockwise so we started in the Doctor Suess area and rode the Cat in the Hat ride.  Then we headed over to watch the Eighth Voyage of Sinbad stunt show.  It was really good.  Then we walked through the Poseidons Fury ride.  It had a lot of really good effects and the kids enjoyed it.  Next we headed over to the Harry Potter area and rode the easier Harry Potter themed roller coaster then went into the castle to ride the Harry Potter and the Forbiden Journey ride.  Audrey was to small so Cole and Melissa rode it then we switched off and Cole and I rode it.  Again the technology was amazing and very immersive.  We continued around the park riding the rides that we could all ride.  Most of them were a combo of a ride and 3D animation.  It was a cool mix and we all enjoyed it.  We then rode the Harry Potter train over to Universal Studios and hit a few of the attractions over there as well.  The best thing about universal studios was the staff really took care of us once they say we were on a Make-A-Wish trip.  They would walk us right up the exit to the ride and were super helpful.  We ended our day with Dinner at the Hard Rock in front of Universal Studios.  It was a long day but we were glad we chose to do it.

Now it was time to pack up and get ready to head home.  We had to be out of our Villa by 11 but didn’t fly out until 4 so we had some time to just hang around the village.  We did some playing at the playground and took Melissa over to see all the fun things at miniature golf.  We went and found our star in the hall of stars and got checked out.  We were exhausted once we got on the plane.  What a jammed packed 7 days we had.

When we got off the plane and walked out of security we had all our friends and neighbors waiting to welcome us back and get us home in style again.  Of course the pink limo was waiting for us and we all piled in and headed home.  We were tired but it was fun to see everyone there.

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In the end it was an amazing experience.  Give1-2017-03-04 11.44.41 Kids the World is an amazing place that I am sad is there.  When you go into the hall of stars there are over 150,000 stars hung up.  That is a lot of families going through a lot of hurt.  We met 2 families that had terminal diagnosis and were spending some good quality final days together.  We talked and consoled each other knowing the pain of the fight.  The memories that we shared during this week we will always have.  The joy and wonderment that both Cole and Audrey had can never be replaced.  So many laughs and and smiles through the week as well as a lot of tears as we knew going into the week that the chemo wasn’t working and we have few if any options left.  My mind kept going to this is our time to spend some good quality final days as well.  I am not saying we are done fighting because we are not.  But we know that the chance for cure is getting next to impossible and would have to wait until we got back to see what the future would hold.

The Link to view a bunch of our Disney Pictures is here.  Or cut and paste in your browser.

Outlook not looking so good

So as we get ready for our trip to Disney World tomorrow we go with heavy hearts.  Audrey’s MRI came back Friday showing the cancer is spreading even though she is getting chemo.  Our doctor sent the scan and read down to the doctor in Houston.  I emailed and and he said he would look at the scan when he gets it next week and we will go from there.  He said there aren’t currently any options though for clinical trials that he knows of that are worth moving the family to try but he will call around and see if he can find anything.  If not it will just be making her comfortable and enjoying the time we have left.

Not sure how I process this info but it’s tearing me up.  We choose not to tell Cole until we get back from the trip so he can enjoy as much as possible of this time together.  I am working on getting my head wrapped around not being a sobbing depressed dad and get a mind set of enjoying everyday.  I am sure once we get there the activities will take my mind off it a bit so looking forward to that distraction.

Just wanted to make a quick update for those following on this site.  Please pray for peace and guidance as we most likely enter the sunset of our fight or that there is something out there that might work.

Make-A-Wish Countdown!

Alright we are 4 days away from our Make-A-Wish trip to Disney World!  Can’t wait to get some good quality play time for a whole week.  Meanwhile I am again writing from my overpriced studio apartment AKA our inpatient room at Cardon Children’s Hospital.  Audrey knows how to do one thing really well and that is grow stuff in her bladder.  Another UTI has 1-2017-02-20 18.53.59brought on another fever and combine that with low white counts and we are again back in the hospital.  The good news is she hasn’t felt that bad this time as we caught it early and her temp has just been hovering around the 100.4 F or 38 C fever point.  Nothing like last time when we were spiking to 104.  She has really enjoyed riding around and playing with her friends from child life.  They are the wonderful ladies that have made it their carrier to help keep our kids happy when they are here.  They can be such life savers for us on those long days of no sleep and tough decisions.

Since the last post we haven’t done much other than stay around the house and enjoy hanging out.  But as peaceful as that sounds it has been pretty busy.  It apparently is lambing season for the sheep.  We had our first arrival of the season about two and a half weeks ago.  Then on Feb. 12th while my parents were down for a visit one of our ewes (female sheep) was in distress while laboring.  Luckily we noticed and were able to take action and help her out.  Melissa grabbed and her and kept her still while I went to work figuring out how I was going to get him out.  Luckily the first time we had a pregnant sheep I watched some YouTube videos on how to help a sheep in distress while delivering.  Yes they really have them but beware it’s not pretty.  I pushed him back in and grabbed his legs and pulled him out.  He wasn’t moving but seemed to have some shallow breathing.1-2017-02-12 10.49.54  Within a few minutes he was looking better but still not moving much.  Then we saw two more hooves pop out and we helped that one out also.  It was a baby girl and she was strong from the second she popped out.  We named the boy Hank and the girl Tracy.  Hank spent a few nights with us inside at night since we had to feed him every 4 hours the first day and it was cold out.  He is finally outside sleeping with the rest of the sheep.  Then this past Sunday night the 18th we had another mama sheep drop her 2 babies on the front porch.  We knew she was to big to just have 2 and she kept laboring for many hours.  Melissa and1-2017-02-13 08.04.34 I took turns watching her all night and sometime in the early morning she past the last lamb but it was a still birth.  She was so tired by then and so were we just from watching.  Both lambs are doing well and Melissa and Cole named them Pearl and Franklin.  Today we had our 6th baby lamb.  Melissa’s dad Rich stopped by the house and said I think your sheep is having a baby.  We looked out the front window and he was already starting to come out.  So I did what every person does that sees a lamb being born out their front window and opened up Facebook and started a live feed for everyone to watch.  It was fun to watch and share with everyone.  You never know what you are going to see at our house.

It’s fun to watch and be a part of something so special as the beginning of life.  It’s a reminder to us that life goes on.  In some cases like the triplet it never really got going and in Hanks case he needed some help but he is now well on the way.  Audrey falls somewhere in the middle.  She has had a strong 5 years and God willing many more to come but she still needs a lot of help to get there and a little luck to beat this beast.  There are days where I just want to be the woe is me type of person and sometimes it gets me and I dwell in my own self pity and cry a bit.  Then I realize I need to pick myself up and get back in Audrey’s corner as she is doing all the hard work and we are there to merely help and advise.  Next week is the rest in between rounds where we get to go be a family of 4.  We get to make some more precious memories and long videos for yo1-2017-02-22 16.01.05u to all struggle through getting to the end because I made them too long.  We get to watch Cole and his baby sister smile and laugh and play together at the “Happiest place on earth”  and I get to try not to cry as I watch them have fun.  It will be interesting to look back with Cole in 20 years and see what stands out the most to him from this trip.  I am willing to bet it won’t have much to do with Disney.

Also here is a link to a quick video I made for Audrey’s YouTube channel Ask Audrey

You can subscribe on YouTube to Ask Audrey and it will update you when we add more.   You can also add your email at the very bottom of this page and every time I post a new post it will email it to you.

Thanks for being a part of our journey and loving on my family!  It’s time to breakout of this hospital and start preparing for a trip of a lifetime.