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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.

http://www.12news.com/news/local/valley/gilbert-girl-beats-cancer-inspires-her-nurses/269970840

http://www.fox10phoenix.com/news/arizona-news/172990193-story

http://www.cbs5az.com/story/32421653/4-year-old-who-beat-rare-aggressive-muscle-cancer-celebrates-final-treatment?autostart=true

http://www.azcentral.com/story/news/local/gilbert/2016/07/11/gilbert-4-year-old-fighting-cancer-going-home-tumor-free/86945466/

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.

2016-05-07 11.37.41

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. 

2016-06-05 09.17.03-1

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.

2015-12-24 18.18.47

Inpatient Holiday’s!

The last update we were preparing to leave Houston.  2015-11-06 20.14.19We had been getting the room packed up and arranging plans to get Melissa and Audrey home when they landed.  We were saying goodbye to all our new friends and just getting ready mentally and physically to head home.  As with all things in our journey things would not go as planned.  Audrey had been very sleepy that day and everyone just dismissed it as being run down from radiation.  At about 9 PM on the evening before we are supposed to fly out I checked her temperature and it’s on the rise.  By 9:30 she hit 101F.  Anything over 100.4 requires an ER visit as we know all too well.  I called the doctor and he tells me to head in to get checked out.  Audrey and I get dropped off at the hospital.  They check her temp and it’s only 99 now but they still want to see her.  So we get checked in and they check her blood counts and find that her white counts have dropped and her ANC is below where they can release us.  They tell us that we aren’t leaving for 48 hours until her blood has time to see if it grows anything in the culture.  Party is on Saturday and that puts us at leaving on Friday.  I spend the next 48 hours pushing the staff to get us out as soon as possible.  Everything goes well and her fever stays down and nothing grows.  So at 9 they tell me we should be going home and at 11 I get the official we just have to run one last antibiotic and we are good to go.  That starts us into a furry of preparing.  I find the next available 2015-11-13 14.51.47flight out and book Melissa, Cole and Audrey on the 6 PM flight to guarantee they will make the party the next day.  We get discharge at about noon then grab some lunch and head back to get backed up.  Melissa has been packing and getting things ready since she got up in the morning so we are looking pretty good for packing and getting out on time.  Our friend Randy has come into town and has b2015-11-13 15.49.09een helping as well, which helped a ton.  Somehow we have a lot more stuff than we left with but we got it in.  We loaded up and headed to the airport and got them through security.

 

Now it’s time for Randy and I to dig in and head west.   We left the airport at about 5:30 PM with 17 hours to go until the party starts and 1,174 miles to go.  Randy drove to San Antonio where we stopped to get gas.  I slammed a concentrated energy drink and started going.  Randy slept between gas fill ups and I got us to Las Cruces, NM before I had to give up and Randy was able to take us home.  I got about 45 minutes of sleep and hung out with Randy the last 5 hours.  We were both a bit sleep deprived crazy which led to some good conversation and music choices.  We completed our trip pulling into the church parking lot at 9:30 AM to join in the fun.  I was so tired but happy to be there.  I remember bits and pieces of the party as I was there physically but mostly checked out mentally.

Audrey and Melissa arrived to the party shortly12241718_10206185308409482_8722366949074575810_n after us and had a great time.  It was great to see all the people that turned out to support us and just be part of an amazing day.   Words cannot explain how touched we were to see all the people that had come out to support Audrey and our family.  They had setup a bounce house, cotton candy machine, root beer float station and of course the pancake area.  It was truly a very special day.  Thank you to everyone that helped out and attended the event!

 

The rest of the weekend we spent just trying12247089_10208406431466143_9128630393843329062_n to get rested and ready for another week.  Monday we were right back at it with an appointment with oncology to review what happened in Houston and what the plan looks like going forward.  We got scheduled for a blood transfusion the next day and scheduled to start our 6 day inpatient the next Monday.  After the blood transfusion the rest of the week was spent at home just getting rested and leaving like a normal family.  By the end of the week we had almost forgotten all the junk in our lives and just enjoyed being home and being together.

Inpatient Monday finally came and we are back to hospital life.  The first day back was full of catching up with all the doctors, nurses and staff that make our stay so amazing.  Everyone wanted to hear about our trip and how everything had gone.  The Child Life team had a little celebration surprise planned for us when we got back.   When we walked into our room they had it decorated for her birthday and they sang us a radiation is over song and happy birthday.  It was a great way to start off our stay.  We are getting settled in and back to our routine.

As I sit here next to Audrey on the eve of Thanksgiving I think of all the people that have posted everyday what they are thankful for.  I think for our family it’s pretty simple.  We are thankful every day that we get to spend another Thanksgiving together as a family of 4.  As we start into the holiday season knowing that it will be spent with our Cardon family we realize that the way we look at the season will be much different this year and every year after.  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!

 

Time to go HOME!

In some ways it seems like this trip has been an eternity.  In other ways it has been a blur of appointments, events and new friendships.  When we got to Houston in September it was still very hot out.  Now we have enjoyed many fall days and a lot of rain.   We have settled into one room living and are very much looking forward to having some walls between us when we get home.  It should be interesting to dwight_howardsee how the kids adjust to having to be alone at night though.  The first weekend in Houston we got to attend the last home game of the season for the Houston Astro’s then last night we got box seats at the Houston Rockets game thanks to Dwight Howard.  Many amazing memories have been formed that the cancer can never take away.

Audrey has left her mark all across Houston in a 2015-09-26 13.26.10way that only she can do.  There is no escaping her smile and beautiful eyes as she reels you in and gets anything see wants.  Unless of course you are her parents that watch this everyday and laugh as she snares another passer by.   She saw a Frozen themed tea set at Target while we were looking through the toy isle shortly after getting into the house.  She asked me to get it for her and I said no since she gets a new toy pretty much every day.  I told her maybe for her birthday.  She then told every person from that point forward in detail about this tea set she wanted.  We had at least 5 people ready to buy that tea set for her birthday.  It wouldn’t take long of course until it finally showed up one day when she was waking up from anesthesia.  Our new good friend Laura from child life had left it on her bed one day.  Now that she had that she quickly moved on to her new request which is 2 watering pots.  She says she needs one for our garden at home and one for the garden at Grandma Jones’s(GJ’s) house.  She now has a few people already committing to having those for her before we leave Houston for her birthday.  She even told Dwight Howard what she wanted while he was here at the house.  So we might end up with a few extra.  I stand by my claim that God has imparted a charisma in this girl that is undeniably inescapable.  The oncologist told us no kid has every come in and won the office over in a way that Audrey has.  When she walks into clinic the office stops to see Audrey come in.  Audrey has clearly been put on this earth for a very obvious reason.  To make people smile for as long as God lets her.

In the last four weeks we have been incrediblylaura busy.  Last week had an amazing event at the Proton center called Mad Scientist where Laura and her team of volunteers had put together a number of fun experiments that had Cole and Audrey completely engaged for the full 2 hours of the event.  The Microwaved Dove soup, created “spy bombs” using zip lock bags and vinegar in water and a bunch of other really fun stuff.   You can see all the fun pictures here at MD Anderson Proton post.  The following day we had fall festival at MD Anderson which is really just inside trick or treating on streroids at MD Anderson.  Unfortuenly Audrey was in radiation for the event but Cole was able to walk in the costume parade.  There were thousands of MD Anderson workers standing shoulder to shoulder handing out candy for an unbelievable distance.  When Cole’s bucket filled up the handed us a new bag.  When that bag filled 2015-10-29 11.45.57up they handed us another.  By the time we got done we had so much stuff he couldn’t carry it.  I would guess he had over 30 pounds of candy and toys.    Then we had Cole’s Birthday which saw an amazing community come up and surround this awesome kid.  Melissa’s mom had an idea to have as many people as they could get to send Cole birthday cards.  2 of our friends started events to send Cole cards that we didn’t know about.  A few days before his birthday cards from all over the country started pouring in.  He even got a card from the UK and another card from a lady named Grandma Verra that was written in Russian that we had to have translated.   He will never forget this birthday and neither will we getting to watch his face light up with every card.  We are still getting a few cards a day almost a week later.  What an amazing birthday.  And of course Cole’s birthday is followed by Halloween.  A week before we met some new friends that had volunteered on Friday night for dinner and activities.  They invited us over to their house and neighborhood for trick or treating.   We took them up on the offer and went over to there house and enjoyed an hour or so of normalcy in our crazy world.  HalloweenCole was Ironman and Audrey was Princess Hulk.  We bought a Hulk costume and Melissa made a tiara and tutu to complete the costume.

This week has been a very busy week as we have radiation and Chemotherapy everyday. We have also had doctors visits and a blood transfusion added into the mix which have lead to some long days of running from one place to another.  While visiting with Doctors this week both the radiation oncologist and the oncologist have given us permission to go home on November 11th as long as her white cell counts are good enough.  This is great news and what we have been looking forward to for many weeks.  I asked the radiation oncologist what came of the meeting with all the Rhabdomyosarcoma doctors.  She said they all agreed the current protocol is the best chance of success but still can’t tell us if success is even possible.  With her case being so unique there is nothing to compare it against and the best she could give me is they are cautiously optimistic about the results so far and we will just need to continue treatment and evaluate things as they progress.  We will get an MRI in a few weeks to see how effective the radiation has been and the oncologist here in Houston is sending us home with a modified chemo plan going forward as well as promising to stay connected with us going forward.  All we can do now is keep doing as they recommend and enjoying everyday that it affords us going forward.

We can’t wait to be home and appreciate everyone one that have come along side of us in this journey so far and the ones we have yet to meet.  God is good and we thank him everyday for the time we get with this beautiful angel on earth.  It may be months or decades but we do know that when it’s time she will shine in heaven like no other because her presence on earth is unmistakably God inspired.  We pray everyday for healing and comfort as she progresses through this journey.

butterfly

Radiation is halfway done.

Trying to post every week put it seems a week snuck by and here we are 2 weeks later.   We seem to keep ourselves pretty busy each day although it seems to be a lot of hurry up and wait then day slips by before you know it.  We started last week off meeting with our Radiation Oncologist. I asked her if they had read the MRI scans yet. She hadn’t looked at the report yet so she read it real quick. The report read that the spinal area cancer has slightly worsened. Not exactly what we were hoping to hear. With that being said she feels that this is the first MRI on this machine and when we looked at the comparison images you can clearly see a difference in sharpness of the pictures which could just mean MD took a better picture than Banner so though it’s very discouraging to not see the huge improvement we were hoping for in doesn’t necessarily mean we have actually lost ground just not gained any in that region. Later in the week we were able to talk to your oncologist and he said his read of the MRI was the same. He feels it hasn’t changed but said with Rhabdomyosarcoma it can sometimes be difficult to tell if treatment is effective because even if the cells are dead they show up on the image as there. He said if it’s not getting bigger we are OK. Of course we will continue to watch that area. He also said that the radiation oncologist and he will be presenting Audrey’s case for review to the entire Rhabdo doctor group at MD Anderson this week for everyone to review. We are very happy to have so many amazing doctors involved and reviewing her treatment protocol.  This week however both doctors told us they are happy with her condition and we will continue to move forward as planned.   

She is now done with 13 of her 25 treatments2015-10-05 14.14.36 and seems to be doing pretty well. The 5 day chemo from a 3 weeks ago killed her blood counts so we had to do a red transfusion last Friday and this Friday as well.  They want her Hemoglobin’s to be over 10.5 as they feel this makes the radiation more effective.

Cole has been doing well at school and seems to enjoy playing around the Ronald McDonald House. He makes friends and then they leave and then he makes new friends. It’s amazing how quickly the faces change with the constant turnaround of families. We have made some good friends and when they get to go home you have mixed feelings. Happy they are going but sad you won’t have them here to help pass the time with. Then there are other families that you can hardly wait for them to leave.

The last couple of weeks we have really enjoyed the different groups that have come to serve here at the Ronald McDonald House.  Some come in and serveus food then leave never talking to the families.  Others come to bring love and encouragement.  The crew from Southwest Airlines 2015-10-13 16.44.26came by and brought the party.  They started working at about 6 AM preparing the food and fun for the day.  They brought pumpkins for the kids to carve, a face (or head)painting station, a DJ and adult drinks!  The food was really good as well.  It started at about Noon and went until 8.  Audrey got Olaf and Cole was a Gladiator.  It was great to see the kids dancing and the families getting a chance to just relax and have fun.

2015-10-13 18.06.342015-10-13 21.00.13

 

 

 

 

 

 

On Sunday an amazing group of ladies came by from a local sorority.  They cooked a great breakfast and then just played with the kid’s.  I just sat back and watched as the kids and ladies ran around playing and laughing.  It made my heart smile.  2015-10-18 11.15.09

Then just last night we had another amazing2015-10-23 18.23.17 group of people that came to love on the house.   They had some wild and crazy friends along with them as well that made it that much more special.  And of course another face (or head) painter that painted amazing things on every kid that wanted one.  Audrey wanted the Hulk on her head and Cole got his whole face painted as Ironman. She painted none stop for many hours until every kid was done that wanted one.    There were many others that have come and served as well that were amazing and engaged with the families.

2015-10-23 18.11.01

Crazies

 

 

 

 

 

Next week Audrey is getting 5 more days of chemo and radiation.   We have Cole’s birthday on Friday and Halloween on Saturday so I am sure once we get threw it will appear to of flown by.  We have been told that MD Anderson throws an over the top celebration on Thursday.  Can’t wait to see all the fun that is going to be had this week.

And of course looking forward to watching the KC Royals win the World Series this week.  Wish I could make it to a game but will enjoy watching them with Cole as he has really gotten into watching them with me this year.   Guess KC is going to have to get to 3 series in a row so I can finally make one next year.

Radiation Started

Another week in Houston and another week closer to going home.  It’s hard to believe we have already been here two and a half weeks.  The weather has been decent in the upper 80’s low 90’s and mostly sunny.  Not being used to the humidity though makes it a bit sticky.

We are starting to get used to the pace of appointments while we are here and figuring out how to get from place to place without as much confusion.  It was still quite a busy week this week.  Audrey had chemo every day and then they had Audiology on Monday, MRI on Tuesday the first radiation treatment on Wednesday and her Oncology checkup on Thursday.  Friday we just had radiation and chemo.  To add some crazy to it I had to travel for work on Tuesday and Wednesday so Melissa was on her own for two of them.

Good news is everyone survived and we managed to get through the week still in somewhat good spirits.  Living in the same room and sharing 2 double beds definitely has it’s draw backs but having somewhere for the kids to play and the few activities a week that come through makes it worth the struggle of community living.  We try to get out of the house when possible to pass the time.  This weekend we went and walked around the Galleria mall and had dinner on Saturday and got a chance to see some friends that were in town and get lunch with them on Sunday.  On the way back from lunch we stopped at a nice playground we have found and let them try and burn some energy before we went back to hangout in our room.  The poorly designed WiFi network is killing me.  I have offered to fix it but they haven’t taken me up on it yet.  Maybe I can get them to look at my LinkedIn profile to see I know what I am talking about.

Next week we have checkup with the radiation oncologist on Monday then radiation treatment and chemo after that.  At the checkup we should find out how many treatments they will be doing which will give us our estimate of when we will be going home.  The great news is we only have radiation on Tuesday, Wednesday and Thursday this week with an Oncology checkup and radiation on Friday as of now.  If it all stays the same it could be a much more relaxed week.

Back home we hear the house and animals are being well cared for and are doing well.  There is also a fundraiser and birthday party being planned for Audrey on November 14th in Gilbert by some good friends of ours.  I am sure it’s going to be a great event that everyone will enjoy.  Please share the flyer with anyone you think would enjoy the event and would like to come support Audrey.Audrey

First week in Houston

Just realized it’s been two weeks since I have updated the page.   Man time has flown with a flurry of activity and hurry up and waits in the last couple of weeks.  Since my last update we ended up back in the hospital on Wednesday the 16th due to fever and low white blood counts.  Audrey’s ANC was at 0 until Monday the 21st when it jumped to 260.  We had to be at 500 to be released and eating.  The last round of chemo had caused a severe case of mucositis.  Because chemo attacks the dividing cells in the body the mucus lining of the body is also attacked which causes serve pain and ulcers throughout the entire tract.  For two days she wouldn’t even swallow her own spit.  She ended up losing a bit of weight during this time as she wouldn’t eat or drink.   Finally Tuesday her counts came up to over 500 and all she had to do was eat and drink to leave.  Once we told her that she tried a lot harder and we were released at about 1 PM on Tuesday the 22nd.

Because of the hospitalization Melissa and Audrey missed their flight on Sunday the 20th to Houston and we missed our first appointment at MD Anderson on the 21st.   We got everything rescheduled for the following Monday the 28th but knew once we got released we wanted to get to Houston as quickly as possible.

Once we got home on Tuesday Melissa and I started packing the van and getting everything ready to leave.  We arrived home at about 2 PM from the Hospital and at 5:30 PM Cole and I were on the road.   We stopped by and picked up our friend Randy who helped me drive 18 hours straight through to Houston.   Cole was a trooper through it all he never complained and was mostly upbeat through the entire trip.  Once we arrived in Houston we checked into a hotel by the airport where I got caught up on work emails and took a few short naps before picking Melissa and Audrey up at the airport.

Friday was our first appointment and experience with the behemoth that is MD Anderson.  I was talking to our case manager down here and she said she was told this is the largest grouping of medical complexes.

Houston Medical Complex
Houston Medical Complex

in the world.  If there is a larger one I would be surprised.   We saw our Oncologist who was very nice and super informative.  We are very excited to have him review her case and let us know what he thinks as well.  It was a super busy day.  They wanted to get blood counts but since we hadn’t been accessed yet at MD Anderson we had to go for a chest x-ray on the 3rd floor then get accessed on the 8th floor before going back to the 7th floor to get blood drawn and deaccessed.

While we were at the Oncologist we got a call from the Ronald McDonald house that they had a room ready for us which was great since we had been staying in hotels the 2 nights before.

We were able to relax a bit on Saturday and Sunday.2015-09-30 19.27.58  We even got free tickets to a Houston Astro’s game on Sunday which was a lot of fun.  Audrey and Cole have learned they like table shuffle board.

Monday we went to our first consultation with the proton therapy team and were able to get answer for all the questions we have been waiting to ask for months.  In the end we got the answer we expected which is there will be diminished IQ which means  slowed learning which will just require adjustments when going through school.  As well as spinal growth issues which they will watch and try and help with growth hormones if needed.  Following the Proton visit on Monday we say the ophthalmologist to get a baseline vision test since radiation can effect vision as well.

Tuesday we had a meeting with the audiologist to test hearing and the endocrinologist to get benchmarks on thyroid levels before radiation.

Wednesday we had a first radiation simulation20151001_210210_resized where they start to get the reading for the radiation plan as well as make her mask that will hold here still while getting the treatment.  Here is a picture before bed with Audrey’s lines on her stomach and I asked her to give me a cheesy grin and thumbs up.  This is what I got. 🙂

That brings us to today where we had our CT Scan that started with getting accessed at 7:00 AM then waiting for the CT appointment at 10:00 and finally getting done about 1:30 with the scan and waking up from sedation around 2:30.  What we thought was going to be a short day at the hospital ended up taking a lot longer.  Seems that we would be used to that by not by not what we expected today.

Tomorrow we just have a checkup with the oncologist then think we will take the kids to Herman Park which is very close to where we are staying.   Staying in a single room all together is going to take some getting used to and some perseverance from all of us.