All posts by Ira Hughes

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.

Audrey_Dad_Shoulders

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 https://www.facebook.com/ira.hughes.1/posts/1694337613911350

 

And if not you can check it out on YouTube and some other cool videos of Audrey.  https://www.youtube.com/watch?v=LgNPieiMSOI&t=14s

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.

Horse

 

 

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.  https://www.youtube.com/watch?v=rBpfcCwt8Ww

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. https://www.youtube.com/watch?v=_eG1tTA0Gc0&t

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 https://www.dropbox.com/sh/541ymsiiqf8megl/AAAFPIQscf7FvhBkDKmLMltma?dl=0 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.

It’s 2017 and we are still fighting

Well I can’t believe I haven’t posted since Christmas.  Things have been busy and sometimes it’s just so hard to sit down and think of all the stuff that has been going on these last few months.   So here I go and trying to get everyone caught up.  When things were looking up last year and we were expecting to be off treatment for Christmas Melissa and I decided we spent last year in the hospital for Christmas that this year we were going somewhere awesome.  I spent months looking at different islands in the Caribbean trying to find the right mix of white sand beach’s with warm water with a house on the beach.  Finally we found a house on the island of Roatan just north of mainland Honduras.  We had 11 days planned and paid for long before we found out the cancer was back.  We really never thought it would stay away forever but had hoped our break would be longer.   We decided very early on that we still wanted to make this trip happen so we worked with the doctors to schedule around it and we even paused chemo treatment and hoped it would be OK.  We needed to live today and worry about tomorrow tomorrow.  So the day finally came and we got up super early as our flight was at 6:40 AM.  We flew from Phoenix to Dallas then Dallas direct to Roatan.  When we left home it was very chilly and windy when we landed in Roatan it was hot and humid just like we had hoped.  We quickly got through customs and were on our way to the beach house after a quick stop at the local market to load up on some groceries. We were very hungry2016-12-17 19.10.36 when we arrived so we put everything in the house and headed to the local bar next door called Beachers.  While we ate Cole and Audrey could hardly wait to dig into the sand and Audrey had been talking for weeks about burying her brother.  In true Audrey fashion while they were digging in the sand a lady walked by and Audrey asked her to help her bury Cole.  She said sure and they became instant friends and set off to bury Cole.  We just sat there and enjoyed the sunset.  That evening that same bar was having live music so headed 2016-12-17 19.16.16-2back to check it out.  While hanging out and listening to this great music and talking to Audrey’s new best friend Foxy we met a few other kids that had just arrived that day as well.  Aden and Ella.  Their family had rented a house right across from ours and the kids all ended up being good friends during the visit.  Their parents and us got along very good as well.

 

The next day was spent on the beach and it was a perfect day.  Sunny and warm and the water was beautiful.  We swam all day and the kids hardly got out of the water.  We found the snorkeling down at the end of the beach was amazing and you could swim right out to part of the barrier reef.  Cole and I enjoyed snorkeling and looking at the coral and fish.  Cole and I created a video of our first day that can be found on YouTube at https://www.youtube.com/watch?v=Y12CUGTJ-fA&t=94s

The next few days the weather2016-12-22 08.05.32 was pretty good but had rain off and on.  It would rain like crazy and then be super sunny for a while.  We just hung around the house and got to know where everything was on the beach.  One morning we went out to find some breakfast and got rained on a bit on the way but nothing bad.  We sat down and ate then continued on our walk past the restaurant.  When we got out away from everything the sky let loose and we quickly learned to watch the sky and listen to the rain as it got closer beating on the palm trees.   It was cold at first but while walking back the rain went away the sun came out and we were all warmed up before we got back to the house.  In the picture you can barely see the house through the trees above the beach chairs.

After a few days of playing around the new friends 2016-12-22 10.38.11-1we had made and our family decided it was time to go zipline.  We hired a taxi and they picked all of us up in one van and we headed out.  Since it is the rainy season you really just plan a time and hope it doesn’t rain.  We got really lucky and that morning it was perfect.  Our driver took us to one of the best places on the island and a place he knew would have less cruise ship people.  It was a great course with 16 lines.  They pick you up in an old truck at the bottom of the hill and you take a sketchy ride most of the way up the hill them climb some sta2016-12-22 12.07.47irs to the top.  Once up there the view is amazing and it’s time to get our instructions on how it all works.  The first line Cole decided he was going with Melissa as he figured out how it felt.  Audrey also decided to ride with me.  Melissa and Cole did great then after that Cole did the rest of the lines himself.  The guides were amazing and helped make the day very enjoyable.  Occasionally they would add some antics to keep things fresh.  Like telling you to slow down when you couldn’t or running away from you when you are expecting them to stop you not knowing that line had an auto braking system.  After finishing up our ride we stopped by and saw some local monkeys and a big bird.  We had a great time with our 2016-12-22 12.10.45new friends and they did great on the zipline as well.  Cole and I also worked on a video for this day as well that can be found on YouTube at https://www.youtube.com/watch?v=RoImU0XydDM&t=57s

 

After that we decided the next trip should be a trip to Little French Key which is a private island that cruise ship people go to experience the beach.  We chose a day that only had one boat so pretty much had the island to ourselves.  The only bad thing is it was a very rainy day but we planned on being in the water most of the time so no big deal.  It took about an hour to get there and along the way Cole started getting car sick.  We got him over to the window and he stuck his head out while we found somewhere to pull over.  We got him some Dramamine and put him up front between the driver and one of the other family.  They seemed like they had good conversation the rest of the ride and he did fine.  Once we got to the island area we took a boat over to the island.  We met our guide once there that walked us around and showed us all the amazing animals they have there.  They have moneys, pumas, birds and even a tiger.  After that2016-12-23 11.22.42 we headed to the gazebo area and got our food ordered for lunch.  While we were waiting for lunch the kids went over and started jumping on the jump platform.  I was super proud of Cole for doing it.  He really came out of his shell a bit on this trip of trying new stuff that he would usually be scared of.  I think Aden and Ella helped him with this a bit.  The day was a lot of fun.  We snorkeled around the bay and even went out for a kayak with the kids.  Then it was time for our guided snorkeling trip.  Audrey had been a bit fussy that day so instead of try and get her to come along Melissa decided to stay back with her and just hangout.  Of course Audrey’s charisma and the staff with no one around see 1-IMG_1505soon had them all hanging with her.  They decided that she needed a Pina Colada and that she needed to help make it.  They all enjoyed her company very much and everyone wanted to get in the picture at the end.  While Audrey and Melissa were taking care of the bar the rest of us were out snorkeling on the barrier reef.  It was a bit overcast but the water was perfectly clear and the reef and fish were amazing.  I think they forgot to tell us that there might be jellyfish.  We found out about half way through the trip.  It hurt but wasn’t horrible.  Just small stingy burning feeling.  Cole decided he had enough and got out and the rest of us finished the snorkel.  Right towards the end our guide took one of the others GoPro and free dived about 80 feet.  It was amazing to watch and the fact I could see him the whole way was pretty cool also.  After that Cole and I snorkeled around a bit more around the bay then it was time to head home.  It was an amazing day.  Still working on getting the video from this day finished up but will post a quick update once we get it uploaded to YouTube.

We spent a few days hanging on the beach, swimming and soaking up the sun when it was out.  Just enjoyed being with our new friends and in the Caribbean.  We finally decided to get the dolphin encounter scheduled over at Anthony’s Key.  We arranged for same taxi guy to pick us up as all our other trips.  It was only the 4 of us this time and it made for a wild ride as the very long drive down to the houses at the beach was super steep and it had been raining.  The driver drove as fast as he could bouncing all over the place and even had us sitting in the back so the weight would be over the tires.  First run wasn’t fast enough so we backed up farther and ran faster.  Getting thrown around the van we made it this time.  The first hard spot was done but there was still another one up the road.  The van started slowing down and you could hear the tires slipping.  He said start jumping so we all started bouncing in rhythm.  Every time we bounced we went a few feet.  We slowly worked our way up the hill and we were off to see the dolphins.  We arrived at Anthony’s Key and got checked in and waited for the water taxi to head to the island where they keep the dolphin.  We only did the encounter where1-NKB_4235 you stand in the water and get to pet them as we didn’t know how the kids where feel about swimming with them and we didn’t want to waste the money if they didn’t like them.  As we waited we noticed a bunch of cats on the island and they were very friendly although we ended up all getting Hookworm parasites and I think it was from these cats.  All the kids were petting 1-NKB_4246them and they seemed nice.  When it was time for the encounter they had our group enter the water in a line.  One of the group didn’t listen very well and left space for the dolphin to shoot between us.  As we got setup in the water the dolphin was checking us out and Melissa was at the end of the line.  All of a sudden she started saying ouch something hurts and 1-NKB_4248struggling in the water.  The dolphin had come up from behind us and wanted to see what her leg taste like.  Guess he took a little nibble.  He was an honorary dolphin.  There was another young male dolphin next to us and the two of them kept fighting right out in front of us.  Finally the trainer had to se
nd that other male dolphin away and get 1-NKB_4265a female in so ours would calm down.  He showed us a number of tricks and we got to pet him a number of times.  It was really cool to see the power and speed they have up close.  The kids enjoyed the experience and we got some really good pictures.

 

 

 

 

 

They day before when we had returned from French Key1-2016-12-26 07.13.47 we all noticed that there was no water at the house and the owners had been trying to get it back working.  They finally decided it was going to be a number of days before they could get it back on so they rented us a room at a hotel about a 1/4 mile up the beach where we ended up spending Christmas Eve and Christmas night as the water wouldn’t be back on until Monday or Tuesday.  We figured we could spend the nights at the hotel for showers and bathrooms at night and at the house and beach during the day.  I took a lot of trips down to the ocean bucketing water up to the toilets to flush during the day.  On Monday they at least got us working off the cistern under the house so we could flush the toilets but still had to shower at the hotel.  Nothing like third world problems.  We didn’t let it keep us down though and finished out our last few days just hanging around the beach.  Cole and I even went out on a boat one day and each caught a fish. 1-IMG_1439-001 Cole caught a small black fin tuna and I caught a small Albacore.  Our friends we had met took them home and cooked them up for us.  We had that as an appetizer before heading out to dinner.  It was finally time to home.  We really enjoyed our time but we were ready to be home.  Got the house packed up and said goodbye to all our new friends and headed to the airport. The flight home went well from Roatan to Miami then it was a straight 5 hour flight to Phoenix.  We got in late and finally home about 1 AM.

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The next day we had to be at the doctor’s 1-2017-01-06 11.31.43office to get counts drawn so we could get chemo the following day.  We had a ton of fun but it was time to pick the fight back up where we left off.  We got chemo on Friday then headed home on fluids and got the IV at home the next day for New Year’s Eve.  I was so tired I was in bed by 9 PM on New Year’s Eve feeling like an old man because all the fireworks were waking me up.   Life is hard sometimes.  Over the next few weeks Audrey finished up this second cycle of chemo and it was time for an MRI to see what the cancer was up to.  We haven’t had a look since her birthday on Nov. 14th.  I was very nervous for the scan as no one seemed to know when we started this chemo if it would do anything at all.  She had her 3.5 hour scan and we finally got the call.  The oncologist had looked had read the report and went straight over to review with the radiologist.  The original report stated brain and upper back showed no visible cancer.  There was some concern about the lumber area where the cancer had originally started but the second radiologist that looked at it thought it just looked like post operation scare tissue or blood vessels that were getting highlighted from the contrast and felt there was no need for concern.  Either way the brain and new tumor site had cleared up and they could not confirm cancer in the lower back so it was still a victory for now.  I was just hoping the chemo had shown a little progress and the cancer hadn’t spread so much better than expected.  A few weeks later we got the call from MD Anderson that our oncologist down there and the surgeon that had removed the tumor felt the lower back was not cancer either.  For now we are in the clear.  It doesn’t mean the cancer is gone but at least it’s not visible and not growing.  It was explained to us that because this chemo is not as strong as the first time we tried this would most likely not result in a cure but would at buy us some time.  Talking to the oncologist from MD Anderson he said this chemo mix is pretty new and he just don’t know if it will help keep it away but let’s celebrate today and look forward to tomorrow for now.  So far so good.

Since the scan Audrey has completed her 3rd cycle of chemo and has now been in treatment for 67 weeks counting the first 58 and now 9 weeks of chemo every week not including the 2 weeks we paused chemo for Christmas.  This Monday Audrey’s blood counts had gotten low and she got a UTI at the same time.  Never a good mix and resulted in an extended stay at Hotel Cardon(Cardon Children’s Hospital).  We are hoping to get out tomorrow which will be 5 days that we have been here.  We are more than ready to be home and get back to being a family together.  I know Cole has really missed having his baby sister at home.   We have 3 more weeks of chemo and are hoping if all goes well and she stays healthy enough we will be leaving for our Make-A-Wish trip to Disney World in 3 weeks.

We continue to meet new families that have1-2017-01-31 21.58.37 started their own cancer journeys lately and try to be a light for them and a sounding board as the experience veterans.  These girls had a 10 PM parade around the floor then a dance party and took a silly picture.  Not sure what the diapers were all about.  We make sure to remind them to take a deep breath and then focus on making happy memories and to not dwell on what could be as none of us know what tomorrow will hold.  Even though we have been doing this for about 20 months I still struggle on keeping focus on today and enjoying our time in the moment.  It’s important to not let tomorrows worries steal today.  I often get in a dark place thinking about how it will be impossible to deal with the final days.  The other day I was driving home yelling at God.   Why do we have to walk this journey?  Why is she not better?  Where are you?  In my head I heard I am right here, I have always been right here.  In that moment I calmed down and thought about that statement for a minute.  I took stock in our lives.  I just happen to work for a company that has been overly supportive and gives me freedom to work when I can and take care of the family when I need to.  We also get great insurance from this company and a good paying job that lets us continue to pay our bills and escalating medical cost and supportive cost.  We have neighbors that are like family and take care of anything we need if gone for extended times.  There are countless other examples of how I see him around us.  I still don’t understand this cancer stuff but I know when the time comes he will welcome her home with open arms.  I hope that time is a long time off but I know he is there when it comes.

Live life today in the moment and don’t let tomorrow’s worries no matter how bad take away from today.

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13 Days until Christmas

Wow 2016 is coming to an end and it is officially the worst year of my life.  Glad to see it go and hoping for a better 2017 even though it’s coming in under tough circumstances.  But even saying that we have 19 days of memories left to make.  Never forget to finish strong.  As I posted in the other post we have started a project called Ask Audrey and we have posted our second episode today. https://www.youtube.com/watch?v=ZVjCf2B6K-Y&t=17s

Audrey has finished her first cycle of 33 to 40 cycles of chemo.  She handled it well and hope the rest go this well and that the cancer is responding to the treatment.  We have our scan scheduled for Jan. 16th to see how it’s working.  She was supposed to start the next cycle next week but we chose to pause and enjoy Christmas.  We are working on creating some great memories before the end of the year and will have some great moments to share.

 

Audrey’s new project

Just a quick note that we have started a new project on youtube.  I have been wanting to start a channel for Audrey and I have been thinking about doing this for 6 months or more.  Plus now that Cole is doing home school he has really been wanting to start a youtube project.  So we put the two together and started Ask Audrey.  We will try and get content added each week so like and subscribe and share with everyone.  Make sure to comment on the video in youtube and add questions.

Audrey’s first 2 chemo’s have gone great and she has one more this week to finish cycle one.  We will then take a break over Christmas and her next cycle will start Dec. 29th.