It’s 2017 and we are still fighting

Well I can’t believe I haven’t posted since Christmas.  Things have been busy and sometimes it’s just so hard to sit down and think of all the stuff that has been going on these last few months.   So here I go and trying to get everyone caught up.  When things were looking up last year and we were expecting to be off treatment for Christmas Melissa and I decided we spent last year in the hospital for Christmas that this year we were going somewhere awesome.  I spent months looking at different islands in the Caribbean trying to find the right mix of white sand beach’s with warm water with a house on the beach.  Finally we found a house on the island of Roatan just north of mainland Honduras.  We had 11 days planned and paid for long before we found out the cancer was back.  We really never thought it would stay away forever but had hoped our break would be longer.   We decided very early on that we still wanted to make this trip happen so we worked with the doctors to schedule around it and we even paused chemo treatment and hoped it would be OK.  We needed to live today and worry about tomorrow tomorrow.  So the day finally came and we got up super early as our flight was at 6:40 AM.  We flew from Phoenix to Dallas then Dallas direct to Roatan.  When we left home it was very chilly and windy when we landed in Roatan it was hot and humid just like we had hoped.  We quickly got through customs and were on our way to the beach house after a quick stop at the local market to load up on some groceries. We were very hungry2016-12-17 19.10.36 when we arrived so we put everything in the house and headed to the local bar next door called Beachers.  While we ate Cole and Audrey could hardly wait to dig into the sand and Audrey had been talking for weeks about burying her brother.  In true Audrey fashion while they were digging in the sand a lady walked by and Audrey asked her to help her bury Cole.  She said sure and they became instant friends and set off to bury Cole.  We just sat there and enjoyed the sunset.  That evening that same bar was having live music so headed 2016-12-17 19.16.16-2back to check it out.  While hanging out and listening to this great music and talking to Audrey’s new best friend Foxy we met a few other kids that had just arrived that day as well.  Aden and Ella.  Their family had rented a house right across from ours and the kids all ended up being good friends during the visit.  Their parents and us got along very good as well.

 

The next day was spent on the beach and it was a perfect day.  Sunny and warm and the water was beautiful.  We swam all day and the kids hardly got out of the water.  We found the snorkeling down at the end of the beach was amazing and you could swim right out to part of the barrier reef.  Cole and I enjoyed snorkeling and looking at the coral and fish.  Cole and I created a video of our first day that can be found on YouTube at https://www.youtube.com/watch?v=Y12CUGTJ-fA&t=94s

The next few days the weather2016-12-22 08.05.32 was pretty good but had rain off and on.  It would rain like crazy and then be super sunny for a while.  We just hung around the house and got to know where everything was on the beach.  One morning we went out to find some breakfast and got rained on a bit on the way but nothing bad.  We sat down and ate then continued on our walk past the restaurant.  When we got out away from everything the sky let loose and we quickly learned to watch the sky and listen to the rain as it got closer beating on the palm trees.   It was cold at first but while walking back the rain went away the sun came out and we were all warmed up before we got back to the house.  In the picture you can barely see the house through the trees above the beach chairs.

After a few days of playing around the new friends 2016-12-22 10.38.11-1we had made and our family decided it was time to go zipline.  We hired a taxi and they picked all of us up in one van and we headed out.  Since it is the rainy season you really just plan a time and hope it doesn’t rain.  We got really lucky and that morning it was perfect.  Our driver took us to one of the best places on the island and a place he knew would have less cruise ship people.  It was a great course with 16 lines.  They pick you up in an old truck at the bottom of the hill and you take a sketchy ride most of the way up the hill them climb some sta2016-12-22 12.07.47irs to the top.  Once up there the view is amazing and it’s time to get our instructions on how it all works.  The first line Cole decided he was going with Melissa as he figured out how it felt.  Audrey also decided to ride with me.  Melissa and Cole did great then after that Cole did the rest of the lines himself.  The guides were amazing and helped make the day very enjoyable.  Occasionally they would add some antics to keep things fresh.  Like telling you to slow down when you couldn’t or running away from you when you are expecting them to stop you not knowing that line had an auto braking system.  After finishing up our ride we stopped by and saw some local monkeys and a big bird.  We had a great time with our 2016-12-22 12.10.45new friends and they did great on the zipline as well.  Cole and I also worked on a video for this day as well that can be found on YouTube at https://www.youtube.com/watch?v=RoImU0XydDM&t=57s

 

After that we decided the next trip should be a trip to Little French Key which is a private island that cruise ship people go to experience the beach.  We chose a day that only had one boat so pretty much had the island to ourselves.  The only bad thing is it was a very rainy day but we planned on being in the water most of the time so no big deal.  It took about an hour to get there and along the way Cole started getting car sick.  We got him over to the window and he stuck his head out while we found somewhere to pull over.  We got him some Dramamine and put him up front between the driver and one of the other family.  They seemed like they had good conversation the rest of the ride and he did fine.  Once we got to the island area we took a boat over to the island.  We met our guide once there that walked us around and showed us all the amazing animals they have there.  They have moneys, pumas, birds and even a tiger.  After that2016-12-23 11.22.42 we headed to the gazebo area and got our food ordered for lunch.  While we were waiting for lunch the kids went over and started jumping on the jump platform.  I was super proud of Cole for doing it.  He really came out of his shell a bit on this trip of trying new stuff that he would usually be scared of.  I think Aden and Ella helped him with this a bit.  The day was a lot of fun.  We snorkeled around the bay and even went out for a kayak with the kids.  Then it was time for our guided snorkeling trip.  Audrey had been a bit fussy that day so instead of try and get her to come along Melissa decided to stay back with her and just hangout.  Of course Audrey’s charisma and the staff with no one around see 1-IMG_1505soon had them all hanging with her.  They decided that she needed a Pina Colada and that she needed to help make it.  They all enjoyed her company very much and everyone wanted to get in the picture at the end.  While Audrey and Melissa were taking care of the bar the rest of us were out snorkeling on the barrier reef.  It was a bit overcast but the water was perfectly clear and the reef and fish were amazing.  I think they forgot to tell us that there might be jellyfish.  We found out about half way through the trip.  It hurt but wasn’t horrible.  Just small stingy burning feeling.  Cole decided he had enough and got out and the rest of us finished the snorkel.  Right towards the end our guide took one of the others GoPro and free dived about 80 feet.  It was amazing to watch and the fact I could see him the whole way was pretty cool also.  After that Cole and I snorkeled around a bit more around the bay then it was time to head home.  It was an amazing day.  Still working on getting the video from this day finished up but will post a quick update once we get it uploaded to YouTube.

We spent a few days hanging on the beach, swimming and soaking up the sun when it was out.  Just enjoyed being with our new friends and in the Caribbean.  We finally decided to get the dolphin encounter scheduled over at Anthony’s Key.  We arranged for same taxi guy to pick us up as all our other trips.  It was only the 4 of us this time and it made for a wild ride as the very long drive down to the houses at the beach was super steep and it had been raining.  The driver drove as fast as he could bouncing all over the place and even had us sitting in the back so the weight would be over the tires.  First run wasn’t fast enough so we backed up farther and ran faster.  Getting thrown around the van we made it this time.  The first hard spot was done but there was still another one up the road.  The van started slowing down and you could hear the tires slipping.  He said start jumping so we all started bouncing in rhythm.  Every time we bounced we went a few feet.  We slowly worked our way up the hill and we were off to see the dolphins.  We arrived at Anthony’s Key and got checked in and waited for the water taxi to head to the island where they keep the dolphin.  We only did the encounter where1-NKB_4235 you stand in the water and get to pet them as we didn’t know how the kids where feel about swimming with them and we didn’t want to waste the money if they didn’t like them.  As we waited we noticed a bunch of cats on the island and they were very friendly although we ended up all getting Hookworm parasites and I think it was from these cats.  All the kids were petting 1-NKB_4246them and they seemed nice.  When it was time for the encounter they had our group enter the water in a line.  One of the group didn’t listen very well and left space for the dolphin to shoot between us.  As we got setup in the water the dolphin was checking us out and Melissa was at the end of the line.  All of a sudden she started saying ouch something hurts and 1-NKB_4248struggling in the water.  The dolphin had come up from behind us and wanted to see what her leg taste like.  Guess he took a little nibble.  He was an honorary dolphin.  There was another young male dolphin next to us and the two of them kept fighting right out in front of us.  Finally the trainer had to se
nd that other male dolphin away and get 1-NKB_4265a female in so ours would calm down.  He showed us a number of tricks and we got to pet him a number of times.  It was really cool to see the power and speed they have up close.  The kids enjoyed the experience and we got some really good pictures.

 

 

 

 

 

They day before when we had returned from French Key1-2016-12-26 07.13.47 we all noticed that there was no water at the house and the owners had been trying to get it back working.  They finally decided it was going to be a number of days before they could get it back on so they rented us a room at a hotel about a 1/4 mile up the beach where we ended up spending Christmas Eve and Christmas night as the water wouldn’t be back on until Monday or Tuesday.  We figured we could spend the nights at the hotel for showers and bathrooms at night and at the house and beach during the day.  I took a lot of trips down to the ocean bucketing water up to the toilets to flush during the day.  On Monday they at least got us working off the cistern under the house so we could flush the toilets but still had to shower at the hotel.  Nothing like third world problems.  We didn’t let it keep us down though and finished out our last few days just hanging around the beach.  Cole and I even went out on a boat one day and each caught a fish. 1-IMG_1439-001 Cole caught a small black fin tuna and I caught a small Albacore.  Our friends we had met took them home and cooked them up for us.  We had that as an appetizer before heading out to dinner.  It was finally time to home.  We really enjoyed our time but we were ready to be home.  Got the house packed up and said goodbye to all our new friends and headed to the airport. The flight home went well from Roatan to Miami then it was a straight 5 hour flight to Phoenix.  We got in late and finally home about 1 AM.

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The next day we had to be at the doctor’s 1-2017-01-06 11.31.43office to get counts drawn so we could get chemo the following day.  We had a ton of fun but it was time to pick the fight back up where we left off.  We got chemo on Friday then headed home on fluids and got the IV at home the next day for New Year’s Eve.  I was so tired I was in bed by 9 PM on New Year’s Eve feeling like an old man because all the fireworks were waking me up.   Life is hard sometimes.  Over the next few weeks Audrey finished up this second cycle of chemo and it was time for an MRI to see what the cancer was up to.  We haven’t had a look since her birthday on Nov. 14th.  I was very nervous for the scan as no one seemed to know when we started this chemo if it would do anything at all.  She had her 3.5 hour scan and we finally got the call.  The oncologist had looked had read the report and went straight over to review with the radiologist.  The original report stated brain and upper back showed no visible cancer.  There was some concern about the lumber area where the cancer had originally started but the second radiologist that looked at it thought it just looked like post operation scare tissue or blood vessels that were getting highlighted from the contrast and felt there was no need for concern.  Either way the brain and new tumor site had cleared up and they could not confirm cancer in the lower back so it was still a victory for now.  I was just hoping the chemo had shown a little progress and the cancer hadn’t spread so much better than expected.  A few weeks later we got the call from MD Anderson that our oncologist down there and the surgeon that had removed the tumor felt the lower back was not cancer either.  For now we are in the clear.  It doesn’t mean the cancer is gone but at least it’s not visible and not growing.  It was explained to us that because this chemo is not as strong as the first time we tried this would most likely not result in a cure but would at buy us some time.  Talking to the oncologist from MD Anderson he said this chemo mix is pretty new and he just don’t know if it will help keep it away but let’s celebrate today and look forward to tomorrow for now.  So far so good.

Since the scan Audrey has completed her 3rd cycle of chemo and has now been in treatment for 67 weeks counting the first 58 and now 9 weeks of chemo every week not including the 2 weeks we paused chemo for Christmas.  This Monday Audrey’s blood counts had gotten low and she got a UTI at the same time.  Never a good mix and resulted in an extended stay at Hotel Cardon(Cardon Children’s Hospital).  We are hoping to get out tomorrow which will be 5 days that we have been here.  We are more than ready to be home and get back to being a family together.  I know Cole has really missed having his baby sister at home.   We have 3 more weeks of chemo and are hoping if all goes well and she stays healthy enough we will be leaving for our Make-A-Wish trip to Disney World in 3 weeks.

We continue to meet new families that have1-2017-01-31 21.58.37 started their own cancer journeys lately and try to be a light for them and a sounding board as the experience veterans.  These girls had a 10 PM parade around the floor then a dance party and took a silly picture.  Not sure what the diapers were all about.  We make sure to remind them to take a deep breath and then focus on making happy memories and to not dwell on what could be as none of us know what tomorrow will hold.  Even though we have been doing this for about 20 months I still struggle on keeping focus on today and enjoying our time in the moment.  It’s important to not let tomorrows worries steal today.  I often get in a dark place thinking about how it will be impossible to deal with the final days.  The other day I was driving home yelling at God.   Why do we have to walk this journey?  Why is she not better?  Where are you?  In my head I heard I am right here, I have always been right here.  In that moment I calmed down and thought about that statement for a minute.  I took stock in our lives.  I just happen to work for a company that has been overly supportive and gives me freedom to work when I can and take care of the family when I need to.  We also get great insurance from this company and a good paying job that lets us continue to pay our bills and escalating medical cost and supportive cost.  We have neighbors that are like family and take care of anything we need if gone for extended times.  There are countless other examples of how I see him around us.  I still don’t understand this cancer stuff but I know when the time comes he will welcome her home with open arms.  I hope that time is a long time off but I know he is there when it comes.

Live life today in the moment and don’t let tomorrow’s worries no matter how bad take away from today.

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4 thoughts on “It’s 2017 and we are still fighting

  1. Thank you so much for getting us up to date. The pictures are great, we especially liked the sand snowman. So much good news in your posting and happy memories made for you all. We continue to pray for all in the family. Much love to all of you.

  2. Ira, Melissa & Family, you are in our prayers daily. Thank you for this up date. May the Lord strengthen you all each day. I can also see how He is strengthening your faith, as hard as this is. This will be another area we will pray for. We love the you – tube videos you & Cole put together! Great team work. Nice snorkeling & zip lines! They are fun! Our love you all & God’s love to you all. Ron & Marlene Phillips

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