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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.


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.

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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.


Crunch Time

So the last stay we made it home on Saturday evening and had 2 and a half days at home this time before heading back into the hospital for her next 3 day chemo.  It was very nice to have the family home for the Labor Day weekend and just get some fun quality time together.

Melissa took Audrey in for blood counts on Tuesday and her white counts had skyrocketed from the neupogen shots.  They are definitely doing their job but starting to cause her more and more bone pain.  We have been giving her pain medication which has done a really good job of helping with the pain.  She shocked the doctors with her numbers and they got us admitted and started on the chemo.  Things went well during the stay and we got in and out in the expected time.

Every Thursday they have a event and this week they had Comicare stop by with Spiderman, Ironman and Super Woman.  They were very awesome to Audrey and she really liked getting to meet them.   We were able to check out on Thursday evening and go home which was very exciting to us.  The Yellow tricycle is what she calls her motorcycle.  She has been known to drift around the corners in the hospital when she gets it going fast enough.

Since Thursday we have been able to be home and start preparing for our trip to MD Anderson in Houston.  This has very much been a logistic nightmare and huge weight on our shoulders.  As we have been working through the needed preparations for us to leave town for 2 or 3 months we have been continuously overwhelmed by generosity from the community that supports us.  From people we know well to people we have never met and everyone in between that has stepped up and helped us out in many different ways with prayers, support and generosity.   I am more and more humbled everyday along this journey.   There are truly good people in this world that understand what making a difference means.

I said the other day that I am forever a different person from this experience and my life will never be the same from here out.  The lens I see life through have been shifted in a way that will forever change my outlook of tomorrow and the tomorrow after that.  As I contemplate the realization that cancer might take Audrey at any point and that we aren’t guaranteed tomorrow either I think if we continue to live life looking beyond tomorrow we will continue to miss the moments that matter and wonder where it all went if we do get to where we were looking.  Live every moment of everyday and just be thankful for the chance you have to be in it.

It never slows down

Life has been incredibly busy since my last update.  This mix of chemos is definitely living up to its expectations.  We have been in and out of the hospital the last few weeks for fevers due to low white cells in her blood.  At the same time I have been traveling for work on and off which has made balancing family life and work life incredibly hard for the whole family.  I have been away from home more days in August than home between hospital stays and work travel.

We were released from the hospital on the 13th of August only to return on the 20th which was 4 days before our next inpatient.  Audrey was given floods and antibiotics for the next 4 days and they finally let us go home Sunday evening the 23rd.  Her white cells were on the rebound and her fever was gone.  The next day I left for another trip and Melissa took Audrey in to check out her white cells expecting to come back on Tuesday to start chemo.  The white cells were so good they surprised us by admitting her to start chemo that day instead of the next.  Which through off the family plans yet again.

I returned from my trip Thu2015-08-22 21.01.51rsday morning and took the next two days at the hospital so Melissa could get a break.  The last trip to the toy closet Audrey picked out mobile to paint.  She found it you put all the colors together you get brown.  So all the pieces got colored brown.

Chemo went well but this one made her feel very sick so she hasn’t been eating much.  On Saturday before we went home they checked her blood and it was already low on white blood cells.  Unfortunately we know this meant it was only a matter of time before she got a fever again.  We had a nice day and a half at home for the weekend and got to spend some quality family time together and with good friends which really helped left us up as a family.

On Tuesday I again headed off for another few days 2015090295084937away on business and Melissa and Audrey headed to the clinic to get blood levels checked.  As we had expected her white cells had gotten annihilated by the chemo and were pretty much nonexistent at this point but no fever.  They allowed her to go home but said to isolate the family.  One spec of germs would send her into a fever.  Of course that only lasted a day and the next morning when they got up her fever was on the rise.  After a quick stop off at Grandma’s to play marble towers they headed off to the hospital where they got admitted again.

We are hoping for a short stay and to make it home before the weekend so we can have a few days before we check back in on Monday for the next round of treatments.


An infectious week

August 13, 2015

This week we entered into a new level of chemotherapy.    We started a round of treatment that will test the ability of little Audrey’s body to produce white blood cells and keep fighting as we continue to tear it down.  This is also a big week for Cole.  It’s his first week of second grade.  The Children’s Cancer Network has been very kind to us and has supplied Cole with everything and a little more than he needs to be prepared for the year.

We start our week off all dropping Cole off for schoo2015-08-10 08.23.25l and loving on him as he is super nervous.  He does fine once in line and heads into the school without even looking back.  He is getting so strong.  I told Audrey to smile when I took the picture.


Then we headed to the Oncology clinic to get a check up and make sure Audrey was healthy enough to get chemo.   Everything was good and we got the green light to check in for our first round of inpatient chemo.  We finally got over and into our room at about noon.  They said that one of the chemo’s would burn her kidney if she wasn’t at a certain hydration level so we waited to reach that point getting pushed a lot of fluids.  Finally at 9 PM we were ready for Chemo.  The first was the normal Vincristine then at 11 PM they started the first of two chemo’s they take 24 hours each to administer.

That evening they decided the UTI that Audrey has been hospitalized the week before was a resistant strain and required a contact restriction and isolation.  This was troubling as it meant we had to stay in our room and that wasn’t going down very well with the 3 year old.   It also jeopardized the possibility of us staying at the Ronald McDonald house in Houston which made it even more of an issue.  Audrey continually asked to go to the Play room but we couldn’t let her.  We talked to the nurse’s, the doctors, and anyone that would listen to that this was silly.  The infectious disease doctor even came by and looked her over and stated in his notes that there is not need for the isolation and contact restrictions as this virus is only resistant to one antibiotic but sensitive to everything else and this has been common knowledge for over 50 years.  The next morning during rounds I brought up the notes and asked what could be done.  Then a God moment happened.  As the team of medical staff was leaving our room the infectious doctor just happened to walk by and talked to the doctor on the floor and convinced him it was worth trying to get her cleared.  By noon they came back and let us know we were released from restriction.   We were in the playroom with in minutes.  It was a small victory but meant a lot to us.

Met the radiation oncologist yesterday finally as well. Been waiting for this appointment for a long time. The doctor was very nice. We asked about radiation toxicity of the Brain and he said that even though the entire brain will have to be irritated because we are using proton it will not cause the hearing loss that photon would and he thinks there is a miss understanding of what does and doesn’t cause IQ loss due to radiation. So really no clear answer but he thought it would be less than we expected which is good. The second concern is the growth of her spinal column. Again using proton reduces the damage and spares some of the tissue and cells that are required for growth. So though her spine will be shorter than if she didn’t have radiation it won’t be hugely obvious which again was not a clear answer but positive.

She will finish up chemo tonight and be released in the morning.  Week one is complete.  5 more inpatients to go in this treatment cycle.  Hoping they go smoother.

A little cuddle time with Dad
A little cuddle time with Dad

Camping on the rim

July 27, 2015

We decided when stuck in the oncology clinic for 25 hours the week before that we should try and go camping before Cole headed back to school and before Audrey started her next round of chemo that would put us in the hospital every other week for a while.

The last time we decided to go camping it was an entire failure.  We had a large tent that was 20 plus years old and had reached its water proof and fabric tear point half-life.  Of course the weekend we had picked to go camping was the first June 5th in Arizona to see rain since they started recording weather patterns.   It rained so much that we had to abandon ship and head for the truck at about 3:30 AM where we tried to sleep and get warm.  After it stopped raining the next morning we discovered everything was soaked and no way could we stay another night.  We packed up and called it an early weekend.

I swore that would be our last tent camping trip as a family and it was time to start campering instead of camping.  So this time I rented us a 21 foot camper that has slide out beds called a hybrid camper off of craigslist.   I picked the camper up at 3PM on Thursday and headed to the house.  I noticed that the brake controller wasn’t working.  This lead to 2.5 hours of troubleshooting before replacing the controller box and having work manually which was good enough to head north and figure the rest out latter.  We loaded the camper got everything set and headed to bed.

The next morning we got woke up by the kids at about 5:30 AM ready to go camping.  So we got up and started getting the last of things ready and at about 7 AM we headed out.  The drive up went smooth.  The truck pulled well and we had decided on the neighbor’s recommendation to head to Forest Service road 300 just passed Pine Arizona.  I had looked at the map and found a small pond\lake called Potato lake and decided we would camp near there.  After driving for a bit down the dirt road we found a spot that looked perfect. We pulled in and had the camper setup by 11:45AM.  2015-07-31 16.38.24

After all the work getting the trailer level and beds pulled out and setup it was time to have a cool refreshing beverage and start relaxing.  Audrey had tea party as soon as we got sat down.  She served us all tea cups of water as we sat and enjoyed the forest.2015-08-01 12.32.01

At about 1 we were still just sitting around hanging out and lighting struck scary close.  Within a couple minutes it was pouring.   We all went inside and took good naps.   Cole and I laid down together and Audrey cuddled up on top of Melissa.  By the time we woke up the rain had stopped.   Melissa and Cole went for a walk to Potato Lake while I got the fire ready.   Wet wood made it slow but I had enough gas to counter it.  Plus gas and fire is always cool.

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Audrey had been asking about roasting the marshmallows all day.   So once the gas burnt off we roasted up a few. Then we cooked our hot dogs.   For dessert we made s’mores.   Watched the fire burn a little and headed to bed.2015-07-31 18.55.22

Audrey isn’t sleeping well still and she is wanting to eat at odd hours of the night.   So the first night of sleep didn’t go all that well since it’s hard to cook a hot dog at 12:30 AM with nothing but a stove flame.   We finally got it done though and she had her night snack and back to bed.  The rest of the night was up and down with her which is nothing new.

Next morning we got up about 7 and decided we needed to head in to town since I needed to fix the rope pull on the generator that had come with the trailer.  I tried to get it setup the first day and on the first pull the rope pulled right out of the generator.  I tried to fix it with pliers but needed a 10mm socket or wrench to break them loose.  Since we were going into town anyway we decided to get breakfast which was very good at Miss Fitz 260 Cafe.    Then stopped by Wal-Mart and got the supplies and tools we needed.  By the time we got back to camp it was lunch and nap time.  While the family napped I fixed the generator and while I was fixing things I decided to look at the trailer breaks again.  I noticed the wire harness I had bought didn’t match what I remembered the wiring looking like on the original so I switched a wire around and now the trailer breaks worked correctly!  Now it was time for a short nap for me too.

After naps we headed off for a family hike to Potato Lake.  It’s about .5 miles into the lake from where you can park.  It was so nice to be in the cool air in the middle of nowhere with no one around.  Everything was so green and the air had that sweet warm Ponderosa pine tree smell.  We walked to the lake and skipped and threw rocks for a while before walking back

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When we got back we got the fire started and just sat around telling the kids stories about us growing up and the different friends we had grown up with and camped with when we were kids.   He all just hung around the fire and enjoyed being outside and in each other’s company then headed to bed.

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This night was no better than the one before but we had precooked the hot dogs now that we had the microwave working so we could just pull them out of the fridge when she wanted them.  She had one at 1 AM and 5 AM plus was up countless times not happy about one thing or another.

We got up the next morning and decided that we should start getting things picked up then head out for a walk before we finish packing up and heading home.   There was closed dirt road just up from the camper that I thought would be good for a walk and to have Cole ride his bicycle.  Well it was good for a walk anyway.  After carrying Cole’s bike up the hill he rode it for a couple of minutes and decided it was to hard and just walked with us.  We had a nice peaceful walk and again enjoyed just being outside and the cool weather up on the rim.

On the way back I figure since Cole’s bike was already up the hill I should ride it down.  After I carried Audrey back to the camper I headed back up the hill and got on Cole’s 20″ bike and started my trek back to the camper.  It actually went much better than Melissa had expected and I didn’t even crash once.  The kids were screaming at me while I was flying down the hill.

After surviving my perilous decent we finished packing up the camper and getting it road worthy for the ride home.  Cole helped pack up the small stuff around the trailer while I folded up the beds and raised the legs.  We hitched the truck and pulled out head for home at about 11:30 AM.  The trip down went super easy and the trailer brakes working correctly made it feel easy to tow while going down the steep down grade coming off the rim.   We didn’t stop once between leaving and pulling into the house about 2.5 hours later.

In the end we were super happy to be blessed with Audrey being well enough to go and getting one last family weekend in together before the long hospital visits start and Cole heads back to school.  Leaving was bitter sweet.  The weekend was amazing and leaving meant we had to return to reality and a week full of test and doctors’ visits.  Many memories were made and as we don’t know what the future will look like for this family we need to make them every chance we can.

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2 more weeks of chemo to complete cycle one

July 13th, 2015

We have been home for a couple weeks and hiding from the world and the germs they carry.  After being home for a couple of weeks we are gun shy from going to any event or having Audrey exposed to anything that might put us back into the hospital.   We would rather be stuck in our house than in the hospital.   We are coming up to one of our longest weeks of outpatient chemo and not looking forward to it.   We have another week of Irinotecan and Vincristine this week.  That means we have 25 hours of inpatient chemo this week and of course I am traveling again for work.   As it would be a very long week with Cole, Audrey and Melissa all in the same room we lean on some friends for him to hang out with which seems to help a bit.   Melissa takes the first 3 days of the week while I am traveling.   When I get home Melissa has had a long few days balancing the long days at the clinic so offer to take Thursday and Friday.   When we go in on Thursday Audrey is very tired and actually sleeps through most of the treatment which allows me to get caught up on work emails and work most of the time.  Friday she was back to her normal crazy self and I balanced watching Frozen and getting emails done while Audrey was getting her treatment.   We made it through the week with Audrey feeling okay but very tired.

Monday we went back into clinic for our 15 minute of Vincristine which takes about 2 hours with the checkups, blood checks and ordering the chemo from the pharmacy.  The great news is her white counts were the highest we have seen them since we checked them before the first chemo treatment.  Next week we go back in for another MRI to see where we are and what the next 3 months of treatment will look like.  It will decide at what point we start our radiation in Houston.  Looking forward to good results and hearing everything is on schedule.