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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

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


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.

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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.

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.



Finding our new normal(Before the bad news)

As with the last few post its been a while since I have sat down to record our crazy world.  Since then there have been many amazing milestones that Audrey has met with such great strength.  She really is one inspiring little creature.

Fathers day was the first of many good days to come.2016-06-18-16-42-52 The kids offered to help me with a project I have been wanting to work on for a while.  I wanted to build a delta wing made out of dollar tree foam and hot glued together that I could fly around.  We worked many hours on Saturday and Sunday to cut out and build our model.  It came out pretty well and flew well too.  It almost felt like life was getting back to normal what ever that was.   We also made it out for a little top golf which Audrey and Cole very much enjoyed.2016-06-19-17-26-27





The summer was pretty good all together.  With the treatments lessening  Audrey continued to get stronger.  Our good moments were better and longer as the hot days 2016-07-10-15-08-39progressed.  One of the limitations is Audrey can’t swim in a public pool or a open body of water with the port in her chest.  Since we have some great neighbors with an amazing pool we spent a few amazing family moments last summer and this summer enjoying the cooling waters and family time together.

Finally the day had come.  An amazing day.  Audrey had fought her butt off in 2016-07-11-11-57-24chemotherapy for 389 days and July 11th 2016 was her day to win.  She had completed her 54 week chemo plan in 58 weeks which was much better than expected.  When you are fighting cancer the closer you can stay to the project protocol length the better chance you have of beating it and so far she is showing she will.  Before the last day of chemo came we were asked by the PR department of Banner if we would share our special day.  Of course we said yes since everyday of this battle has been about hope and awareness against pediatric cancer.  We said in the very beginning no matter what the out come we would use our experience for these reasons.  We were told there was an interest in the story but didn’t know how much until that day came.  When we showed up to the Pediatric Outpatients Treatment Center that day there were a number of camera men already setup. The amazing child life team had decorated the room in celebration of the day.  As always Audrey was on point and winning everyone over from the moment they met her.  Here are a few of the links from the Phoenix news channels.

After that the next big step was the MRI in August.  The scan in April was clean but there had been a number of months since them and a decrease in the intensity of the chemo 2016-07-30-10-07-14-1 2016-07-30-10-57-27that she was receiving.  Now that we are gun shy we expect every bit of news to be bad as this is what we have been come to expect over the last year.  Of course you can’t always think of the future and you have to continue to enjoy every borrowed day.  So in between the last chemo treatment and the scan we squeezed in one more camping trip before it was back to school for cool and camped for 4 days up at Lynx lake in Prescott.  Again we pretended that life was normal and just stopped to smell the roses and live life as a family. Many memories were made that will last a life time.

The time finally came to have the scan.  At this point we are pretty desensitized to Audrey getting a 4 hour scan and of course she takes it like a champ.  The hardest part is waiting for the news.  As I have mentioned before we are more used to bad news than good but always holding hope for the good.  We had an appointment the next day with Dr. Ruzika her neurosurgeon to hear his read after all he was the one that delivered the devastating news to start with.  When he walked room he had a huge smile on his face and said it couldn’t look any better.  In fact it looked better than before the surgery as her syrinx was gone and the tethering had been resolved as well.  He did his assessment was very pleased.

It seems life will never be normal and 2016-09-02-11-04-18Audrey will continue to touch everyone that she2016-09-02-11-59-22-2 2016-09-02-13-00-08  encounters  more deeply than we can ever understand.  As I posted in the spring Audrey was able to be apart of an amazing event called Respect Bald put on my Joe Maddon the General Manger of the Cubs.  During that time she met and stole the heart of Clark the Cub and the team.  I had expressed to Clark that we would like to attend a game to see him and team in September if that was possible.  A few days later I received an email I would have to read a few times to believe.  Clark had invited Audrey to not just come out to the game but to accept the honor of throwing out the first pitch on a day dedicated to raising awareness to pediatric cancer.  The day was very special for us in ways that I don’t know I will ever be able to express.  The trip started off with us arriving to our hotel room with treats and gifts for the cubs.  The next day there was a car waiting for us at the hotel to take our family to the game.  We arrived at the VIP entrance to be met by Clark the Cub and our other team friends.  As soon as she saw him she ran to meet him.  They then held hands all the way through the park on the way to the field with smiles on their faces.  Next she got the chance to sit in the dugout with Clark and meet a number of the players and see Joe Maddon again.  Following that she got the chance to open the game and show those boys how to pitch.  Clark caught the ball and ran to give her the biggest hug.  After the pitch Clark tried to hand her the ball as a keeps sake.  Audrey told him selflessly that she had already got a ball today and this one was his.  We later found out that this ball is sitting on his desk in a display box to always remember this special day.  Following the pitch we got to watch a Cub’s victory over the Giant’s were we got to witness one of the purest moments in sports.  The sold out stadium singing “Go Cub’s Go”. I have never in my life seen more love of a sport displayed in any event I have ever attended.  Since this was Labor day weekend we chose to stay a few days and enjoy the city.  The next day we rode 2016-09-04-13-02-19the train out to China town and2016-09-03-15-18-04 had lunch at a historic dim-sum restaurant called Won Kow.  Apparently Al Capon used to eat at this place.  After eating there I could see why.  Next Cole wanted to see the Willis Tower(Sear Tower).  Because it was Labor day weekend the line was stupid long and when we got to the tower they said it would take 3 hours.  We chose to spend this time that day touring the city on a double decker bus learning more about the city.  The next day we returned to the tower with very little time.  It took 2 hours to get to the observation deck and we only had minutes to take a few pictures before heading to the airport.

After that the day to day life returned and we had assumed we were done with Hospital stays.  It turned out life would throw us another curve ball as we hadn’t seen enough.  Audrey had been showing signs of a UTI for weeks and without fail popped a fever.  Since the port was still in we had to go the Emergency Room for one last time.  Of course the next day was an event we had been wanting to attend since we missed it last year.  Children’s 2016-09-18-13-25-54-2Cancer Network was holding a fort building event that we really wanted to attend.  That night we were admitted into the hospital for observation but the next morning we got a surprise that we were going to get to make it to the event.  I had only slept a few hours but as with everything else we refused to be defeated and were discharged just in time to make the event.  Since I hadn’t slept much we called in a ringer.  Our family friend Randy Blunt is always there to support and again stepped up for a great event.  Him and his son Tyler came to help us make an amazing cardboard fort.

The next big day we have been waiting for is to get the port removed.  This will allow Audrey to function as a normal girl, swim in a public pool and start to attend Preschool.  It also means that when Audrey gets a fever we can treat her like every other kid and an ER 2016-09-27-11-35-43trip is no longer required.  The procedure 2016-09-27-08-37-54was very routine and went perfect.  She went back for 45 minutes and came out of anesthesia like she had just taken a short nap.  Within about 30 minutes she said she was ready to go up to the 3rd floor and see what project was going on.  The ladies upstairs couldn’t even tell she had just had a surgery.


Since then we have just been recovering and enjoying the time outside of treatment.  We have even had a chance lately to enjoy some time just making memories.  This  a few weeks ago was fall break for Cole so we decide to get out for a few days.  We decided to2016-10-14-14-17-55 give Lake Roosevelt a try.  The weather was amazing and we just got to spend some time together without thinking about what was still needed.  It was so fun to watch Cole with Audrey helping her out into the lake when she wanted to go.  Or helping her with her fishing pole when she needed it.  We just spent time relaxing and enjoying our company.  One of Audrey’s wants in life was catch a fish and eat it.  We had the chance to catch about 10 Blue Gill so we grilled them up and ate them.  I over cooked them so they didn’t come out great but one more thing she can cross off the list.  The weekend was memorable and will not be forgotten.

As we adjust to life after treatment we are trying to process what it means to be us individually again.  What it is to be a family of four again and starting to figure out how to start working our way back into the world.  It’s easy to take a trip and peak out a bit into the world and feel normal but when we come home we remember that it isn’t the old normal we return to.  It’s the new one.  It’s kind of like moving into a new house.  You like it but it’s not home.  Before you know it you can’t remember the old house.  I think that is what it will be like when we get there.  We have a number of fun trips coming up over the next 6 months that we will continue to build memories.  I have learned it doesn’t matter how much money you have, how big your house is and the car you drive.  If I am lucky enough in life to become an old man (some might say I am already) I hope I won’t be looking back on the stuff but the memories that we made along the journey.  I hope this year of struggle will help to make us better people seeing live from a new perspective in a new normal.

I was working on this post the night before her last routine scan on November 1st.  Unfortunately our fight with Rhabdomyosarcoma is not over.  More in the next post…


A year in treatment

It’s been a whirlwind of a year and at the same time it’s seemed like an eternity and almost impossible at times.  Spring has been a much better time for us as a family.  Since the last post in April we have had no inpatient stays.  Audrey has fought hard ending up in the ER a few times but the doctors felt it would be better to be at home than inpatient given her counts at the time.  Since we haven’t been spending as much time in the hospital and Audrey has been feeling better this has given us time to play, live and enjoy.  We still have our hard moments but they are fewer and farther between.

In April Audrey had been asking to go to the park to 2016-04-30 13.30.15play for months.  She so badly just wants to be a normal kid.  But her counts being low and the germs at the playground weren’t worth risking it.  Well now that she has been doing better we have been venturing out a bit more.  She got a nice hour of play in before she got tired and was ready to go.  It was the most we had seen her active in a long time.  After the park she decided she wanted watermelon ice cream.  After scratching our heads for a few minutes and Melissa searching the internet we found a place that makes ice cream with liquid nitrogen called Sub Zero and watermelon was one of the flavors.  The really nice staff made our ice cream then showed us a trick they can do with a water picture and some cool liquid nitrogen.  Cole and Audrey had fun playing in the mist and Audrey said it felt funny on her head.

When we aren’t out and about we have2016-05-06 07.49.32 just been enjoying watching Audrey’s personality come back a bit more every day.  She still has her hard days when getting treatment or having to be at the hospital for one test or another but her fire inside continues to burn brighter.   We even made it out for a little mini-golf and she hung in pretty well.  She was wiped when we got done but it looked like she had fun.

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It was then time for our trip back to Houston for a checkup with the radiation oncologist.  Because we continue to be a team of 4 fighting the battle we knew we had to take Cole even though he would miss a few days of school.2016-05-08 09.16.32  The flight down went well and the flight staff was very good to us and loved on the kids.  Audrey of course ate them up sporting her Princess Sofia crowned head phones.  While we waited for our appointment the kids got to play in the playroom waiting area where we spent every week day for 2 months during our daily radiation.  They really enjoyed being back and visiting with all of our new Houston friends.  The checkup went well and the doctor helped point out things we will need to watch for going forward such as 2016-05-09 08.33.41growth and IQ issues due to the amount of cranial and spinal radiation she received.  Something she pointed out that was in our favor is the tumor started in the lower back not the brain so the extra powerful burst that were done the last week were not to the brain.  Since we were staying in a hotel and had the afternoon free I took the kids over to the Houston Science Museum.  Somewhere I wanted to go while we were there but it just never happened.  It you ever have the chance to go stop in it’s an amazing place.  That evening we got a chance to see one of the families that we had met while in the Ronald McDonald house and have dinner with them.  It was great to visit with them as well.

The next day it was time to fly out but not before2016-05-10 12.24.52 stopping and having lunch at our favorite spot in Houston called Little Matt’s.  Jim Reid is the owner and his son has fought cancer a number of times.  They truly understand the toll it can take on the family.  When we walked in the door Jim happened to be there to meet us.  He introduced himself as the last time we were there we had met his manager not Jim.  After introducing himself he told us that he was excited for us to come in and he was taking care of anything we wanted today.  He gave us drink cups and even went to the register and got quarters for the kids to play games.  We were meeting some close friends we had met that were still staying at the Ronald McDonald house for lunch.  While we were eating Jim came out and talked with us a bit and just listened and encouraged.  As we have learned this journey really distills our character and in Jim it shines through.  The trip home was uneventful minus the wonderful flight staff that again loved on the kids bring back first class snacks and cookies for them.

The rest of May went really well.  Still getting chemo2016-05-14 12.43.29 treatments but still finding more time to play.  Audrey had been begging to go swimming and it was finally getting warm enough and our nice neighbors as always are happy to accommodate her anytime.  We also started planning our first camping trip of the season and our first chance to get away that wasn’t medical related since late last summer.  My friend and I took our kids with us on the scouting trip to find the perfect place.  While we were up there we went on a short hike to show him Potato Lake a place we had found on our last trip.  Being a dad I didn’t think to bring everything that 2016-05-22 10.46.27was need such as a hat.  Put what I lack in planning I generally make up for in resourcefulness.  It was the spare pants to the rescue.  She said she liked it because it was like she had hair.

The last week of May we finally received our last round of one of the more intense chemo combinations.  We are finally in the home stretch!  That was good because we had a lot planned for the memorial weekend and the week following.  We started the weekend off with a few friends2016-05-30 11.59.02 over for dinner on Friday, then we went over to some friends to swim on Saturday.  Sunday we had Gramps over for lunch and I got to go watch some drone racing.  On Memorial Day Javier from the Houston Astro’s set us up with Tickets to the Diamondbacks Astro’s game and even got us on the field for batting practice.  We also hunted down Baxter the Diamondbacks mascot to get a picture so we could send it to Audrey’s buddy Clark the cub.  They still continue to send emails and videos back and forth.  We had such a great time at the game.

2016-05-30 15.09.30

After the game we came home and loaded up the trailer as much as we could and got set to go camping.  The next morning we got up really early and finished our preparations.  There was only one unusual hurdle we had to get over before heading out of town.  We had an 8 AM doctors visit at the hospital to make sure the chemo from the week before hadn’t dropped her counts to much.  So we loaded up with the camper in 2016-06-01 10.12.02tow and stopped by the hospital.  We got the green light from our doctors and we headed straight from the hospital up to the rim.  We weren’t sure exactly where we were going to camp but we knew it had to be high in elevation as the weekend weather was calling for 118 in the valley.  We found a nice little spot near the rim and settled in for 5 days. On Saturday we packed up and started heading home.  The camper worked perfect and we really enjoyed our time up north but were very much ready to be home.

We had to head down on Saturday 2016-06-05 08.59.09because Sunday was cancer survivor day and Cardon Childern’s had rented out Amazing Jake’s and had a bunch of special guest attending.  We got there right at 8 when they opened and they had all the video games on free play and all the rides running for the kids.  We played games, drove go-karts and bumper cars and rode a few rides.  Audrey was all over the place getting loved on from her Cardon family.  They enjoyed having their families get a chance to meet her.  And of course there were the mascots.  Audrey got to meet Sparky from ASU, Big Red from the Cardinals and Howler from the Coyotes.  After meeting all of them she danced the rest of time until she looked up and told Melissa she was too tired to dance 2016-06-05 09.12.05anymore.  Melissa picked her up and she just cuddled in for a nap.  It was such a great event and truly awesome to see all the families that are fighting harder than anything they have ever done get to just smile and enjoy the morning.

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This week Audrey started her first of 2 more week 2016-06-06 10.36.33long chemo’s.  It was a long week for her and Melissa as they spent a lot of time at the hospital.  But since her spirits and energy is up they had a lot of fun as well.  She also started attending preschool at the hospital 2 times a week one on one with a teacher for the summer.  She is super excited to get to go to school and I think it’s because it makes her feel more like the other kids.  The picture in the pink cape is while we were waiting for her teacher on the first day.  I think she was excited.



Tomorrow will mark the one year mark since Audrey was diagnosed with stage 4 rhabdomyosarcoma in her nervous system.  It’s hard to believe she has been fighting this hard this long as she is still as sweet and tenacious as ever.  While we were at the survivor party I took this picture.  It might be my favorite so far.  It really sums up her character.  When I looked up the word survivor one of the definitions is “a person who continues to function or prosper in spite of opposition, hardship, or setbacks.”  No matter what the outcome is in the long run this girl has and will impact, inspire and touch people in ways no one can yet understand.  As we start to see the cancer fight slowing at least for now we look forward to many more amazing memories every day. 

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Spring in full swing

So many thing have happened since the last post. Valentines We have spent so many days each month in hospital and February wasn’t going to be any different.  We had been home for a few days and in the evening on Valentine’s Day Audrey got a fever and had to be admitted again.  Of course she didn’t go in without some supplies to make it more fun.  Her new fake rat Mark, the yarn Viking hat from another cancer friend and her festive Valentine balloon.  When we got to the ER she had the rat in her pocket which scared the nurse.  Audrey was very proud of that and laughed very hard.

We were in for most of the week but weFashion Show had a very important event coming up that we knew we had to attend because Audrey had been looking forward to it for months.  The annual Children’s Cancer Network fashion show.  We had been positioning it all week that if we were still inpatient we were going to need a temporary pass to attend as sometimes you just have to live life.  The good news is we were discharged on Friday and were able to attend.  Cole and Audrey were both in the show and it was a wonderful event.  We were so blessed to be a part of something so great.


The next day we had our last round of Clown face this cycle of chemo which also means the last scheduled inpatient chemo that we will have to get.  Audrey has started to enjoy scaring people and decided she needed to step up her game a little.  We borrowed a mask from our friends in POTC and Audrey and Child life Tracey went around the floor scaring staff.  Turns out some people are terrified of clowns.  Audrey would laugh really hard and tell them don’t be scared it’s just me.  Audrey decided she was tired of being in the hospital so when her chemo and blood had run she was ready to go home at 2 AM in the morning so we left.

This would be another short stay at homeunicorn and on leap day we were back in the hospital.  The really strong chemo she got had caused her counts to crash and she was burning through platelets and red blood cells like crazy.  On top of that her white cells were completely gone and needed some time to regenerate.  Of course everything is better when you are transfused with Unicorn blood.  This time she was taking a long time to recover and another event that Audrey had been looking forward to for a while was coming up.  So we started working with our doctors to make sure we could get a short pass to leave attend the event and come back.  This event is called Respect Bald.  It is a fund raiser that Joe Maddon from the Chicago Cubs organizes every year.  The players and fans donate money and get their heads shaved.  Audrey and Cole shared shaving Joe’s head and other players throughout the event.  After we got done the Cubs had a suite waiting for us and the other children cancer families that were helping at the event.  Along the Clark 1way Audrey met her new best friend Clark the cub.  He is the Cubs mascot and Audrey fell in love with this guy.  They smile on her face and the joy she showed every time she looked at him and hugged him was awesome.  Definitely what she needed in this dark time of being hospital bond.  I was very tired as I had spent the night before with Audrey and fell asleep during the game only to wake up to a foul ball being hit into the suite next to us.  NEVER sleep at a baseball game.  During the game Clark came back to visit with Audrey and she just loved on him the whole time.  She hugged him, held hands with him and even took selfies together.  It was great to see her smiling and outside of our one room suite in Mesa.

Clark 2

We had 6 hours of great play time but we knew we had to be back at the hospital by 4 and we were.  It was a few more days before we finally got the counts we were looking for and got to go home.  The day before we left we also found that a special guest was stopping by for a visit.  Charlie Puth a young singer and song Charliewriter stopped by and said hello to all the kids in the forever young zone.  Audrey didn’t know who is was but it was fun to have something to do that day.  We finally got discharged but knew we had to be back Thursday for her MRI.  We were very nervous about this MRI because it was our first one since we got back from radiation and felt it was really going to set the tone for treatment going forward.  If we got a clean scan it would mean we continue course and finish the current chemo plan.  If we didn’t see favorable results however we were going to pause reevaluate and change course.  Let’s just say it was a very long day of waiting.  Our awesome doctor called that evening to give us the good news.  No visible cancer!  This doesn’t mean she is out of the woods yet but it does mean the treatment is working and for the first time in 10 months she has a better chance of beating this first round of cancer.  These were amazing words and something that would trigger some deep thought.  Of course I was overjoyed to hear that we are winning but I have been doing the best I can for the last 10 months to mentally prepare myself to bury my daughter at any moment.  I have been preparing for the day when the doctor tells us worse news if that’s possible.  It turns out it’s not an easy shift in thinking it takes some time to understand.  Now we are starting to not worry about her leaving soon but starting to think about the long term ramifications to the choices we have been forced to make.  Nothing with cancer comes without a cost.  Turns out the chemo to treat cancer can cause cancer especially at the dosages and the number of times Audrey has gotten them.  Then the radiation will cause some level of brain damage over time as well as growth issues in her back.  All things that we will work through but a new mindset none the less.  I had a realization one day that we now have a kid with special needs.  It seems obvious now but in all the craziness of just trying to keep her alive and rid her body of cancer I hadn’t thought of that.

Since the MRI was good we have continued the plan to slowly scale back the intensity level of chemo that she has been getting with the most intense being completed.  She is still getting 3 different chemo’s but we have switched out the most intense with to a new one.  The new one doesn’t seem to hit her blood counts as hard but seems to make her very nauseous.  The best part is she only gets it every three weeks which has led to much less time in the hospital.  Her awesome medical team has also worked out a way to get chemo that is normally given inpatient to be given outpatient with IV fluids and home health care.  This means we spend a day getting chemo then go home with an IV.  The next day the nurse comes and takes out the needle and verifies everything is good.  We really like being at home.  On the 10th day after chemo we had a clinic appointment but Audrey was looking a little run down.  She also had a Clark and Markspecial friend make a surprise trip to the hospital to see her.  It turned out Clark the Cub wanted to see her one last time before heading back to Chicago.  He hid around the corner and her smile lit up the world when she came around the corner and saw him.  A very special video.  Clark posted that to the Cubs facebook page and it got over 292,000 views, over 2,700 shares and more than 400 comments of encouragement.  It was a very special moment.  Audrey’s counts were low and she had a low grade fever so they admitted us for the evening to get reds and platelets as well as observe her.  The next day was the planned Easter egg hunt.  A new friend Audrey had made named Ashton was in getting his very last chemo treatment so he hid the eggs for all the little kids.  With the visit from Clark, the racing around the unit with Ashton and the Easter egg hunt this was a very good visit.  Being home for a couple of weeks before coming back probably helped a bit as well.2016-03-026

Easter would mark a huge milestone2016-03-27 07.25.31 in our treatment.  It is the first holiday minor or major we have been home for since June 16th when the journey began.  We spent the day just playing around in the morning.  Audrey and Cole went through their baskets then were ready for an Easter egg hunt out front as we do every year.  Audrey was good for a couple of rounds but quickly ran out of gas.  Cole however played for many rounds and is getting much better at finding the eggs.

Since then we have just been spending as much time at home and together as possible.  We had 3 solid weeks at home before getting admitted yesterday after going to the clinic 10 days after chemo and again needing platelets and red blood cells at about 5 she spiked a fever and they admitted us for observation.  Hopefully a short stay.  The good news is it gave me the time to sit down and catch everyone up.  We are blessed every day to spend each day with Audrey and finally have a better chance of tomorrow.  We will keep praying and keep taking it day by day.  We know there are challenges yet to be faced but we also know that this little girl will not settle for anything but greatness.

Super Bowl Sunday

Been a while since my last post.  Sometimes when I have the time to post it’s just too hard to look back on how much has gone on in the last weeks.  Audrey has been fighting so hard over the last 6 since Christmas.  We were able to go home for a few days from December 28 to the 30th before returning for another week getting to go home on January 6th.  During this time we finally decided that Audrey needed a feeding tube to bring her weight up and allow us to Selfieget the oral meds in her that she had been refusing.   We were able to stay home for 5 days before finding out that the UTI we knew Audrey had when we went home required another stay in the hospital.  This time we only stayed 6 days this time.  During her stay one of her aides brought her a selfie stick.  She had a good time with it.  We were also able to get her 3 day inpatient chemo done while we were in.  We were not scheduled to be back in the hospital for the next chemo treatment until Feb 1st.

Audrey really had a hard time being in the hospital during her last stay and really enjoyed being home having tea 2016-01-18 11.41.17parties and playing with her kitchen set.  We all enjoyed some normally of being home and getting to see the friends a neighbors.  When we are home we stay home since it’s cold and flu season we try to stay away from everything as much as possible.  As has been the case lately it didn’t last super long.  We were still super thankful for the 8 days at home before Audrey’s body needed more support from our hospital family.  It took about 5 days for them to get everything back in control and on her scheduled date to start the next round of chemo her platelets were too low.  Since the radiation treatments in Houston her platelets have had a hard time coming back at each of her treatments.  The good news is we got to go home for theweekend and spend it together.  The weather was perfect and let us get outside some and just hanging out and play.2016-01-19 11.39.02

Audrey went back in for counts on February 1st to see if her platelets had come up enough or not.  Turned out they hadn’t’ yet which was good for our family logistically since I was traveling in during the middle of the week. 2016-01-024 They scheduled us to come back on Thursday.  A couple more days at home before returning on Thursday to start chemo really raised her spirits.   During the last stay the child life team had caught on that Audrey is starting to become upset to come into the hospital.  So they decided Audrey needed a schedule and something to look forward to each day to make her stay less stressful.    We made counts this last Thursday and returned to our all too usual home away from home.  It has seemed that the new plan from child life has kept her spirits up much more during this stay.  We have 3 more days before we get to go home on Tuesday.

Audrey has been fighting so hard for so long.  Her body has endured so much and continues to amaze us all at how strong she can be.  This treatment week is week 30 of her treatment schedule that is currently 54 weeks long.  We have been doing this for 33 weeks total and with all the small delays and traveling to Houston and back it’s pretty amazing how close to the schedule we have managed to maintain.  For the last couple of months Melissa and I have had a huge decision that we needed to make about the next cycle of treatment.  We had differing opinions from 2 incredible doctors.  One suggested we remove the next 5 treatments of chemo as it has shown to cause liver damage with small gain against keeping Audrey’s type of cancer away.  The other doctor said we can manage the liver damage if it happens and anything more we can do even if minimal to keep the cancer away is worth doing.  So after asking a lot of questions and pushing back really hard we have decided to keep the next 5 treatments in place and monitor her liver closely.  Not really a decision a parent ever thinks they will have to make but at least it’s decided and we can start pushing forward.   Audrey has another MRI coming up the last week of February that will give us another view of what’s going on inside and how effective her treatment has been.

Whether you are rooting for the Panthers or the Broncos today I hope your team wins.  I don’t have a dog in this fight.  It’s been fun to watch and just for a few hours take our mind off the season we are in.


Christmas at Cardon Children’s Hospital

As we spent our Thanksgiving with our Cardon Children’s hospital family getting Chemo we are here for Christmas as well.  Can’t believe Christmas is tomorrow.  Audrey finished her 6 day inpatient chemo on the 1st of December.  The next week we had off from chemo but still had a number of clinic visits.  Everything checked out fine and we had a good week at home.  The following week on the 7th we went in for chemo but Audrey’s Platelets were to low and still needed to recover.  They said the radiation causes them to recover slower for a while.  Nothing ever goes as planned.  It really makes planning work trips difficult.  Audrey went back in on Wednesday and her platelets had to be 75 to start chemo.  She came back at 77 and was good to go.  This chemo is the nasty stuff.  One of the chemo causes her mucus areas to die off and come back which is super painful.  Another chemo really beats up the counts and causes her to feel bad.  Before they can start these chemo’s she has to be very hydrated.  While they were checking her hydration level they noticed white cells in her pee.  They suspected a UTI and they were correct.  While we got chemo they also started treating the MRI.  Chemo treatment was done late Friday night so we figured we could go home on Saturday.  There goes that planning stuff again.  Turned out the UTI virus type she had needed an IV antibiotic and they couldn’t reach insurance on the weekend to get approval so we would have to stay until Monday.   We knew we had an MRI scheduled on Monday at 11AM that we thought we had scheduled far enough out we wouldn’t be inpatient.  As has been the case a lot lately we were wrong.  So we did the scan registered inpatient.  On top of that her blood counts came back with low Hemoglobin so she needed a transfusion.  By the time her 4 hour MRI got done and her 3 hour transfusion it was 9PM before Melissa and Audrey got discharged.  I was already on my way to Portland thinking I had scheduled around the MRI with plenty of time.

The week went well and they got out patient chemo on Wednesday.  This chemo can be given regardless of the counts and they noticed her platelets were low again so scheduled a follow up on Friday.  By Friday she had quit eating and drinking because her throat hurt so bad from the mucositis.  The nurse practitioner took one look at her and asked me if I was going to be mad at her if we had to stay.  I said based on how she was looking I was somewhat expecting it.  Her platelets had dropped to dangerous levels and she needed a transfusion.  Plus her white cells were completely gone from the 3 day chemo.  That coupled with not eating and drinking and the severe throat pain it was time to check in.  Since then it has been about controlling pain and getting IV hydration and nutrition.  Yesterday after 7 days she finally reached the bottom and today has been the first day in a week we have seen positive gain.  Her ANC was up to 400 so she is recovering and you can hear in her voice that her throat is getting better.  Tomorrow we are hoping to see her start drinking and maybe eating to start working her off the IV nutrition.  So we can go home a couple days before starting our 6 day inpatient chemo early next week.

This week leading up to 2015-12-026Christmas has been a very busy one around the hospital.  We have had incredible donors and foundations help to make this week special.  Audrey was chosen by a foundation to receive a custom made American Girl Doll.  The doll was made to match her complexion, eye color and even earrings.  She has the2015-12-20 15.34.19 same bald head for now but when Audrey gets her hair back we can send “little Audrey” off to the doll hospital to get her matching hair put in.  Another foundation came by and filled the lobby of the cancer floor with toys and invited us to all come out and take anything and everything we wanted.  It’s called Blake’s Miracle Foundation.  They were amazing and Audrey chose a number of very nice toys.  Then there was another foundation that a girl named Savannah created a couple of years ago.  She is a young teenager that chose a few years ago to start raising money to buy kids at Cardon with cancer presents.  This year she raised around $4000 that she split between 4 kids that are stuck at the hospital over Christmas.  What an amazing young lady and I can’t wait to see the amazing things she continues to do through life.

As I sit next to Audrey’s bed on the oncology floor of the hospital I can’t help but think of where we were last year.  This time last year Melissa and I were sitting on the deck of the house we had rented on the beach in Florida drinking beer and listening to the sound of the waves crash on the beach.  Wow what a difference a year can make.  It causes me to rethink Christmas and what it means to me.  It’s not about the hustle and bustle of scouring the mall looking for the perfect gift and getting run over by all the other people in a rush and completely missing the point of the holiday.  It’s not about testing your patients as you put up with family you may or may not want to be spending Christmas with.  It’s about Jesus.  And it’s about taking a step back and looking at all the amazing things we have had handed to us and placed in our lives.  In June we didn’t know if Audrey would see Christmas.  Well here we are.  Again I am reminded we aren’t guaranteed tomorrow, next week, or next Christmas.  What we have is now.  I plan on making memories that I can put in the memory bank and save away forever.  Don’t sweat the small stuff and enjoy this Christmas now.  Remember to laugh and love and to focus on the awesomeness around you.

Merry Christmas 2015 from Audrey and all of us that get to follow in her shadow.

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