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Monday, December 15, 2014

An Answered Prayer and a Trip to the Desert

Prayers have been answered.  God lead us directly to a hospice with amazing Christian men and women who have a heart for our family.  We interviewed a couple of different agencies but God made it very clear to us that First Choice Hospice was the right one for our family.  In less than a week hospice has already been a huge help and taken a lot off my plate.  Hospice provides immediate care 24 hours a day, a personal pharmacy that is delivered straight to our doorstep and individuals who can now fill roles that I grew weary of.  

As an early Christmas present from my mom, Zach and I flew to Tucson last weekend to see his his brother Ben and Jenny.  Ben coaches basketball at the University of Arizona and Zach really wanted to see a game.  It was a wonderful time away with family and we loved every minute of it.  We had long, full days of shopping, eating, basketball and exploring.  First Choice Hospice contracted with a hospice in Tucson should we need anything while we were away and that was very comforting for me. I knew if anything happened that I couldn't handle, we were in good hands away from home.  Traveling took a lot out of Zach and he relied on a wheelchair when necessary.  We now have a wheelchair at home that will help him conserve his energy when we are out and about.  

Zach's pain has continue to increase so the decision has been made to start him on methadone.  It is no longer a good idea for him to drive.  I don't know how much longer he can work.  But he still enjoys teaching and coaching and having a reason to get up each morning.  Christmas break will allow us to reevaluate things and see where he is at.  

Thank you to everyone who shared a message with Zach for his Christmas surprise.  Between the videos that Kevin Plew and I filmed and the ones people sent me, there are close 70 clips and 100 people.  I know Zach will be very touched and will enjoy hearing your stories.  

Breakfast with Santa at Chik-fil-A!

Oliver was glad to have a break from the traditional breakfast of eggs and oatmeal that mom makes :)  

Max ate everything in site!

Zach's childhood friend Jon Latta flew up from Phoenix to visit.  I have heard many stories from Zach over the years and it was fun to finally meet Jon.  

Jon also brought his son Tristan who was a very sweet little boy.

Oliver loved having a playmate!

We cheered the Wildcats on to a victory over Michigan.  

Selfie with 2 of my favorites!

Easily the cutest Cat fan there.

It was such a treat to see Ben on the sidelines, doing what he loves!

Spent our last day at the Arizona Sonora Desert Museum.  

Don't let the sun and blue skies fool you--it was cold and windy.  It even poured rained one day.  But we didn't let the weather get us down and explored nonetheless.

Riding in style! The wheelchair was a lifesaver.  Zach was utterly exhausted by the time we flew home that night.  It would have been impossible to visit without the wheels.  

Friday, November 28, 2014

Our Next Steps

We met with Dr. Dan this morning.  Zach's comfort is top priority and he will no longer continue with any treatments.  We will interview a few hospice facilities next week.  It will nice to have them on board and they will be able to provide a full "home pharmacy."  Zach plans to continue teaching and coaching for as along as he is able.  

We had a nice pre-Thanksgiving pizza feast on Wednesday night with the Ingersolls.  Thursday afternoon we went to Kris' house and spent a lively afternoon with more family.  Oliver and Max had a fantastic time!  Zach was in quite a bit of pain both days.  But he now has strict instructions not to be afraid to take his pain medication.  He is a different guy when he is nearly pain free!  

Our dear friend Maxine May took family pictures for us a week ago.  The new blog picture is one of them.  She has a knack and quite a talent for getting everyone's attention!  

 Grandma Wendy and Oliver!  She's such a Grandma--she made sure Oliver was fed and happy before she got a plate for herself :)

 Uncle Matt and Zach.

 Posing after dinner.  

 Oliver enjoyed his Thanksgiving meal...especially the croissants.  

 Cousin Carter, Uncle Nate and Oliver burning off their pie calories in the backyard.  

 No tears = successful picture

 Kris with 2 of her boys.

 Mitch and Jessica are newly engaged!

Mitch and I got a lot of flack for both wearing purple shirts.  


My mom and I ran our annual 5K Turkey Run again this year. 

Many months ago my sweet aunt shared this with me: "Sometimes God calms the storm. Sometimes He lets the storm rage and calms His child."  I have reminded myself of this over and over this past week.  He is in control and we WILL be okay.   

Tuesday, November 25, 2014

Results

Zach woke up last Friday morning with upper back pain but he attributed it to a long night of sitting at the TranSiberian Orchestra.  We tried massages and a heating pad for a couple of days but they offered only temporary relief and the pain worsened.  This was an eerily similar experience to the one in August when we learned his cancer had metastasized.  Both times the pain stuck up on him rather quickly, it was in his back, and we kept trying to "work out" the knots and pain with massage and heat; nothing had a lasting effect.  I spoke to our nurse on Sunday because I was so concerned.  We moved scans up to Monday (yesterday) and met with a nurse practitioner later in the afternoon for results.  

We learned yesterday that Zach has not responded to the treatments these past 6 weeks.  (There are not yet any definitive answers as to why he has such intense new pain--it could be a blood clot or pneumonia but likely the spread of the cancer.)  He is now on an antibiotic for pneumonia and further tests for a possible blood clot are being run.

Zach is having a hard time keeping anything down.  He went in to the hospital today for fluids and liquid morphine.  He also got a prescription for stronger medication to get him through the rest of the week until we meet with Dr. Dan on Friday.  My guess is that instead of treating Zach's cancer as we've done in the past, we will now make it a priority to treat his pain and offer as much comfort as possible.  

We are looking forward to Thanksgiving at Kris' house with family and incredibly thankful for all of you.  


These are a few of the sweet kids from the Eagle Middle School National Junior Honor Society who brought us an early Thanksgiving dinner last week.  What a special treat for my crew!  Max loves his cuddle time with Ellie (in pink) in the church nursery.  

Friday, November 21, 2014

Seattle Updates

We made the decision last month to continue with treatment with the hope it would buy us time before a spot became available this month. The research coordinator from Seattle called yesterday afternoon.  They offered Zach a spot in their clinical trial that would begin next week.  However, the trial protocol requires that Zach has a 4 week chemo break before he begins the trial.  Although he had his last treatment 2 1/2 weeks ago, he has been taking a daily chemo pill.  This disqualifies him from beginning the trial next week.  Zach will loose his spot in the trial and be put back on the waiting list.  Regardless of what scans tell us next week Zach wants to take a break from the chemo.  Even if the treatment IS working and scans come back looking good, it has come at a high price; Zach is worn out and and tired of being sick.  Another spot in the trial might open up in January.

Those who know me understand that I ask TONS of questions (to the point that Zach usually offers those in the room a sympathetic smile as I rattle them all off.)  When we visited Seattle in September I gathered all of the information I thought we needed.  We were told at that time that Zach could continue with chemo until a spot became available.  Never once did anyone mention he would need to be chemo free for 4 weeks before he took part in the trial.  I was livid when I learned this yesterday.  I continue to be incredibly disappointed with the Seattle Cancer Care Alliance and the oncologist.  

A couple of weeks ago I asked Oliver what he learned in the children's program at church.  He told me, "God's got it!"  I nearly broke down in tears because he is right!  I have been reminding myself these past 18 hours that God's got it.  I can't put my trust in the doctors and research staff at the SCCA.  But I can and will put my trust in God.  He has always made things abundantly clear to us during this journey.  The door to begin the trial next week closed for a reason.  I have to believe that in order to function and continue on.  

Thank you to those who have shared a video with me.  I have received 4 via email.  A wonderful friend at Eagle High School spent time at both schools yesterday to interview a few kids and I am so grateful for that.  He is also helping me format everyone and put the video together after Thanksgiving.  If you'd like to share something for Zach's surprise Christmas gift please email it to me at: ingersoll.nicole@gmail.com by November 30th.  


 My brown-eyed snow bunny!

 No free ride around here--he has got to earn his keep!

 Zach and Max snuggling at The Little Gym during a birthday party for a friend.

Thank goodness there was a car cart available at Fred Meyer--Oliver is less than pleased when there isn't one.  

 Sweet Max!

 Max helped me organize his room.

Zach and I went to see the Transiberian Orchestera last night, a wonderful gift from my mom. I have wanted to see them for years!  It was an amazing show.