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…


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