All posts by Ira Hughes

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.

1-2016-12-28 11.03.00

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.

1-2016-12-25 15.01.46

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.

 

Another holiday season in treatment

Well we left off in the last post withaudrey_cole Audrey recovering from surgery on her birthday at the Hospital in Houston.  She got discharged around noon and we went home to celebrate as best we could in our apartment we had rented in Houston.  While Audrey and I spent the night in the hospital Cole and Melissa had been hard at work getting the place ready for Audrey to come home.  They blew up and tied 84 balloons and filled a closet with them for her to dig through and find a little gift we had got her.  They also hung streamers and other decorations around the apartment to surprise her.  She really enjoyed it when we got home.  After that it was all about healing.  She was in quite a bit of pain but wouldn’t say it.  She was walking around all hunched over and we would ask her if she hurt and she would in a weak voice say she was good.  Each day got better and we just focused on healing and hanging out around the house for the next couple of days.

Thursday came and we saw our neurosurgeon and he said everything was looking great and we were cleared to go home.  We saw a few people on the way out and said our good byes excited to start getting ready to head home.  We spent the last evening with our friends Katie and Javier at our favorite place Little Matt’s.  It was a good way to end our trip.  The next morning we got up really early to finish packing and get to the airport by 6:30 so we had to leave at 5:30.  Everything went well and we made it hope safe and sound.

We spent the weekend resting and getting caught up a bit around the house.  We were exhausted but still had things we needed to get done before we start back with our local doctors on Monday.  Monday came and the pathology hadn’t come back yet which caused us to cancel the appointment and reschedule for Tuesday.  I did my job and start working the Houston team to get results and by that afternoon we had final confirmation the tumor is the same ERMS tumor that we had fought before.  Now we could sign off on our treatment plan and get the port put back in and start chemo.  With the short week we had a small amount of time to get chemo scheduled but our medical team did a great job of pushing through the insurance approvals and getting us all setup.

This morning we arrived at the Hospitalaudrey_childlife at 6:30 for our check in to get the port put in and start chemo.  Since we are already in for the port and we are doing 2 new chemo’s we all thought it best to spend in the night inpatient.  The surgery went well and last about an hour.  We had an Anesthesiologist that we haven’t had before and Audrey didn’t wake up as quickly from his mix of meds.   Will need to get the records and see what he used different this time.  We finally got to our inpatient room around noon and we have just been hanging out getting hydration and then chemo.  We finished chemo about 30 minutes ago and have just started our 12 hour post hydration and we are expecting to be released sometime tomorrow morning.

When I started writing this post I looked back on my post from last year.  As I wrote that post on the day before Thanksgiving last year I was sitting in this same spot.  We were getting chemo and we were very unsure of her future.  Last year I was just thankful for having a family of 4 and knowing if it would ever be 4 again.  Well God saw it to give us another one and we will fight for the next and the next after that.  What we have learned along the journey though is we have to take each moment and create lasting memories and not worry about whether the next will come but that we enjoy today.

I will end this post like I did last year.

Don’t worry about the perfect meal or the perfect party.  Don’t worry about getting the perfect gift or decorating the perfect tree.   Just make perfect joyful memories because that is what truly matters.  Only God knows the beginning and the end and the rest of us just have to enjoy the time we are given in every moment.

Happy Thanksgiving!  Eat, drink and have fun!

Just as things were looking up

Rhabdomyosarcoma like all cancers is tough but it is proving to be tougher that we thought.  As said in many of the other post we have had clean MRI scans since April.  All of us including the doctors were pretty optimistic that we had it beat.  One November 1st Audrey went in for her 3 month after treatment follow up MRI.  We were shocked 2 weeks ago when the oncologist called to tell us it was back.  The cancer had returned in one of the sites that it had originally spread to in the upper spinal cord.  T3, T4 and T5 area.  This area had shown to be more persistent than any of the other areas during the first treatment as well.  It was the last to go away in the scans but had shown it was gone in 2 scans.  Of course we felt like we had been hit by a truck again.  A sucker punch in the gut from good old cancer!  For 3 or 4 days we couldn’t eat or sleep just trying to understand it all and figure out what we were going to do.  We already had a routine follow up with our doctors in Houston so we reached out to them for additional help with the cooperation of our local oncologist.  We left Saturday for Houston as we already had our flights booked not expecting to be coming out for this.  We were all setup to meet with our radiation oncologist,  a neurosurgeon and our Houston oncologist Dr. Harrison.

We had reached out to a few friends before heading to Houston to try and connect while there.  One of our friends invited us to an event she was volunteering at. The event was to celebrate the birthday of a child lost to fighting cancer and raise awareness. We got to hang out and play a bit and meet some new friends. Then we stopped at a restaurant we saw while heading to the event that looked about our speed. It was called Skips farm in Cypress TX. It had a fun playground in the back and food from a food truck. It was a happy place for me hanging out and watching the kids play.  I struggled a lot looking over at her and watching her enjoy life as I was still expecting the worst when we had our appointment on Monday.

Since we came in on Saturday we had Sunday as a free day to go explore.  In the 2 months that we had been in Houston last year we never made it done to Galveston and we had heard good things about it so we headed down there to take our minds off of the upcoming days.  We found a nice restaurant to have lunch in right on the water.  Then we decided to go for a dolphin ride.  Again a brief distraction for the mind and a fun ride where we found smiles and laughs.  After the dolphin ride we asked some locals where to find the beach.  The pointed us to Stuart Beach.  The weather was cool and so was the water but the kids just need sand to play in.  Audrey found a fork and a spoon that instantly became their beach toys and they began to dig and have fun.  They made sand angels and even pretended to dig in the sand.   After dusting off we made our way to the playground on the beach and the swang until dark.

That night I didn’t sleep much again anticipating what the next day might bring.  First we met with the radiation oncologist and she said that is looks suspicious and that since Audrey just finished her radiation right at a year ago there isn’t much option to safely give radiation at this point and she hoped the neurosurgeon could offer some options.  Next we met with our neurosurgeon that had been recommended to use here in Houston.  He looked at the images and felt very strongly this is a tumor as we suspected.  He said on the good side it looks like a very wimpy tumor and he could biopsy it and try to remove as much as possible expecting good results.  We asked what that meant for the cancer treatment going forward and so he called our oncologist to come in so we could all meet and decide if we wanted to do surgery.  We all agreed it was the best option so we could verify the cancer type and remove as much as possible.  Our oncologist said there have been a few effective chemo treatments for a recurrence of Rhabdomyosarcoma and he is most likely going to recommend a 10 cycle treatment which is 3 weeks per cycle.  The first week is 3 chemos, then 2 the following and 1 the last week.  Then it starts back the following week with all 3.  As we see it now the 5 year survival odds are pretty low for Rhabdomyosarcoma that has come back after receiving the 54 week 6 chemo treatment and radiation.   He also wanted a PET scan to make sure the cancer hadn’t spread anywhere else in the body.

We had Tuesday and Wednesday off from medical stuff as the PET scan was scheduled for Thursday and if it went well the surgery would be on Friday.  As soon as we found out we were staying for longer that expected Melissa had a great idea to look on AirBnB for a place to stay.  She found us a nice little duplex not that far from the medical center that was almost half of what we had been paying for the hotel and gave us a more home like feel.  So that meant Tuesday was moving day.  We got up slowly at the hotel and got packed up and headed over to the new place.  The rest of the day and the next we just hung out and enjoyed the down time and time together before the scan.

If you have read this blog you have figured out I am a worrier and the upcoming PET scan had me on edge.  I was very hopeful the cancer had not spread and that the surgeon could remove most of the tumor and give us an advantage.  The day of the scan finally came and it all went well then we just had to wait for the results.  Cole and Audrey had been asking to go to the Space center so we decided to do that as a distraction while we waited for the news.  Cole,  Audrey and I had gone last year while in Houston but when we went there was the left overs of a hurricane passing over and it was causing very heavy rain so we weren’t able to enjoy it as much and they had added the space shuttle independence exhibit since we were there last.  We only had 3 hours so we stopped at the shuttle first.  As we got to the top I got the call from Melissa that the PET scan came back clean except for the area in the spinal cord and it was only lit up dimmly.   This was great news and the first of any good news we had had in a week and some.  That meant the surgery was on.  After seeing the shuttle we went on the tram tour and saw mission control, the space equipment testing facility and the last Apollo rocket before heading back to the house.

Friday came and it was time for surgery.  We had a scheduled 1:30PM surgery so we got everyone up early and made breakfast since she wouldn’t be able to eat all day.  We were glad we did as the surgery got bumped because of an emergency that had come in and needed the OR that we had been scheduled for.  Finally about 5:30PM they took her back.  She hadn’t ate or drank anything for 12 hours and didn’t complain once.  The surgery lasted about 3 hours and the surgeon came out to talk to us.  He said unfortunately the tumor was really sticky to the spinal cord and he was only able to get about 50 to 60 percent of it.  He said he took the big parts he could then just spent the rest of the time scrapping and picking at it where he could to remove as much tissue as possible before closing her back up.  The good news is she was stable and waking up and the getting in and out went perfect.  I spent the night that night.  She was in a good deal of pain and slowly weaning off the surgical pain medicine but doing well.

The next morning we took it pretty easy and she just watched shows on her tablet most of the day and got checked out by doctors.  They all said she looked great.  About noon she decided she wanted to check out the playroom so she got up and we walked to it.  She was showing signs of pain in her back but wasn’t complaining.  We didn’t play for long as she got tired quickly but it was good to see her up and walking.  That afternoon Melissa and her took a good nap and it was a good thing they did as Audrey had a special visitor.  Her friend Clark had reached out to one of his buddies and ask him to make a stop by the hospital for him.  So that afternoon Orbit from the Houston Astro’s stopped by to give her a surprise visit and a welcome distraction to the day.  They hung out in the room for a while joking and having fun.  Then when it was time to go Audrey decided she wanted to walk him out.  At MD Anderson it’s a long way from the pediatrics floor to the front door at main but we figured lets see what she can do.  She walked hand in hand with Orbit all the way there.  We said our goodbyes and watched him leave them she walked all the way back.  Not bad for a girl who had an operation less than 24 hours before.

Sunday was spent hanging around the hospital and just enjoying another day together hanging at the hospital and healing.  Of course Audrey found her way into many more peoples hearts today.  From the nice lady running the shuttle on the sky bridge to hanging out with her nurses and painting their finger nails.  There have been many tears and there are certainly many more to come but we choose to smile more and make happy memories no matter what the future might bring and the scary predictions we are given.  The only thing in control is God and I have to give my struggles to him every second of every minute as fear and doubt try to sneak in.  She is strong and determined and so must we be.  We will fight until we win or run out of options but along the way we will live.

Today is Audrey’s birthday.  This is a hard fought 5th birthday.  We sit at the early stages of the second round hoping for 6th and beyond.  Happy Birthday to the strongest human I know!  I love this little girl and she has made me better and stronger than I ever thought I could be.