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Friday, October 17, 2014

Zach's Decision, Disneyland and a Birthday Boy!

Seattle finally called this week--Zach is not a candidate for clinical trail #1 because he doesn't carry the necessary protein.  We continue to wait for a spot in clinical trail #2.  

Zach and I spent the past week and a half to trying decide our next steps--continue with a different treatment in Boise or do nothing.  I was torn with the decision. Beginning a new treatment would offer Zach peace of mind because he was doing something, but it meant the possibility of pretty awful side effects (mouth sores, hand/feet neuropathy and blisters, nausea and fatigue) and the high likelihood it won't make much of a difference in his cancer.  Doing nothing meant palliative care would begin (which is disheartening) but keeping Zach's pain under control would be a top priority.  God remained pretty silent during this time of decisions. We finally realized that instead of praying for a sign and direction, we would pray for Him to bless our decision--regardless of what we chose.  

We met with Dr. Dan Wednesday morning.  Zach chose to continue receiving treatment.  He receives 2 IV drugs every 3 weeks and takes an oral medication twice daily.  The side effects are similar to the ones he faced at the beginning of the year and it has been a difficult few days since treatment.  Instead of spending the day after Thanksgiving Black Friday shopping with the rest of the crazies (as has been our tradition) Zach will be getting early morning scans and results.  So we have 6 weeks to wait before we have answers.  This treatment is our final option in Boise. 

The likelihood of this drug making a dent in his cancer is pretty bleak.  But we continue to pray for the time we have with him.  He has started the tough journey of legacies things for the boys and family members.  I can't even begin to share how difficult that has been for both of us.  But I am so thankful he has the opportunity to do it.  We've had time to prepare for a lot of this, unlike many families who lose a loved one in an instant. I think it is human nature for us to reach out to people when they are not doing well--I certainly have done this too.  But I want to encourage people not to wait to reach out and spend time with Zach.  Hopefully the side effects let up a bit between treatments which will allow him to live a bit more normally.  I want Zach to enjoy the time he has with family and friends on his good days.

Last weekend we took an incredible family trip to Disneyland, courtesy of Ryan DeLuca.  Ryan graduated a year ahead of Zach from Capital and is the founder and CEO of Bodybuilding.com.  He reached out to me in January with his offer.  Several times over the past 10 months I have wondered if Zach's health and our schedules would ever allow us to go.  Thankfully everything worked out and the time away gave us a chance to remove ourselves from the tough decisions here at home.  Ryan flew us down in his private plane (that he piloted!) and treated the 7 of us to a wonderful 3 days in California.  Zach and I took our moms, brothers and Jessica. Oliver and Max stayed at home with Grandma and Grandpa Ingersoll and had far more fun here than they would have had missing naps in a hot amusement park.  I don't think Ryan will ever know what it meant to Zach, me and our families to take a trip like this.  He blessed us so much with his gift and we are incredibly thankful.  

In closing, my precious little boy Max turned 1 on Thursday.  October 16, 2013 is a memorable day (for obvious reasons) but also because this was the day that Zach could no longer deny something was wrong.  He didn't feel right and the pressure in his chest was too heavy to ignore.  Strange what a difference a year makes.  

Zach was honored last week as one of Idaho's District Three Assistant Coach of the Year.  Mike Hirano (principal) and Troy Rice (AD) joined us to celebrate.  

That plaque is shiny!

Hanging out in the airport, awaiting our pilot!

Mitch and Jessica.

Our Disneyland crew! 

Private plane is the only way to go...I highly recommend it :)  What an amazing treat!

Zach as co-pilot.

Kris and me.

Zach giving the thumbs up--all engines are a go!

My mom and me.  

I ensured a safe landing into Los Angeles.  I know Ryan was glad I was his co-pilot for this leg.  

Loved stepping off the plane into the warm California air!


Awww....

Breakfast in hand.  The day can commence.

The brothers at California Adventure!

Ben, my mom Kathi, Jenny and Nate awaiting the Cars ride.  

The end of a long, but wonderful day.

Ready for day #2 at Disneyland!

Kris and Zach.



He's a catch ladies!

Spent our last day at the beaches in Laguna and Huntington.

Rented a 4-person surrey and cruised up and down the beach.  Broke nearly every rule while riding it including the one not to ride faster than 5 mph.  

No family vacation is complete without a broken down vehicle, right?  We had planned to spend the evening in Santa Monica but a dead car battery kept us from leaving the hotel.  Never could get it fully charged.  3 hours later a new car was delivered.  Had a nice dinner within walking distance of the hotel despite the set back.   


 It is tradition for me to take a picture of each sleeping boy the night before their birthday.


Birthday Breakfast!

Birthday Lunch!

 Hooray for 4 teeth and turning 1!


 Uncle Mitch, Max and Jessica


 Rachel, Nate and Jared


 My dad, Pat and Zach's dad, Mark


Yes they do!!

 Max was a bit shell shocked in the beginning by the whole affair.


He quickly found solace in the decorations.  

 One is crying, the other is distracted--yup pretty typical.


 Max was ready to give up on the night before birthday cake...


 ...but changed his mind when we saw his delicious carrot cake.


 Max was SO upset that I blew out the candle.



Zach taught Max how to eat his birthday cake.

 Uncle Mitch and Max!


 Pictures with the birthday boy!



 Max quickly grew comfortable with making a mess and soon carrot cake was flying everywhere :)


 Zach and Nate (and someone desperately needs to clean handprints off the back window...)


The boys with their great, great grandma Laura

 Zach, Grandpa Jay and Nate

The entire crew!  We loved having everyone over to celebrate with Max.  Oliver woke up this morning to a very quiet house and spent the rest of the day wandering around asking, "Where did all the people go?  What happened to all the persons?" The boys went to bed hours past their bedtime.  And in typical fashion awoke at 6:30 a.m. this morning ready to begin their day.



Saturday, October 4, 2014

Difficult Decisions Ahead

Zach and I were fully prepared for Friday's bad news.  We have been acutely aware of his declining health the last 2 months; the ER trip, stomach bug, throat infection, weight loss and increased pain all meant something was wrong.  Even though we were not surprised by the scan results it was still very hard to hear the news.    

The cancer has continued to spread further into the lymph nodes and the liver.  Our options in Boise are quickly running out.  The final treatment that Boise is not promising.  It is extremely toxic, much like the chemoball was earlier this year.  Zach has already received 2 components of the drugs in earlier treatments.  They did not help him then; we fear they will not help him now.  The side effects sound pretty awful.  I have enjoyed how alive and active Zach has been these last few months.  It makes my heart hurt to have him face side effects that truly affect his quality of life.   

Seattle still has not identified whether Zach qualifies for clinical trail #1.  There was a mistake in the lab and the sample needs to be retested.  A spot for Zach in clinical trail #2 may become available in November.  However, if Zach progresses too much further downhill he will no longer be a viable candidate for trail #2.  

We are weighing our options.  It's a fine balance deciding between Zach's quality of life and treatments with nasty side effects that offer little hope.  No one wants to feel like they're giving up.  But at what point do you choose to enjoy the time you have left with the people you love rather than pursue further options that offer little hope and terrible side effects?  

I appreciate your offers of help--at this time we really are doing okay.  Dinner usually finds its way onto the table one way or another.  We desperately need prayers for direction though!  Some difficult decisions needs to be made in the next week.  


We spent this morning at the Eagle fire department's open house. Oliver climbed in the fire engines, met several firefighters and ate lots of junk food.  A great way to spend a Saturday!

 I asked Oliver what he was doing and he said, "I hold daddy."  

 Everyone deserves a treat now and then.


 He cried big, sad tears when I took it away.  

 Zach and I went to the BSU game with our friends Dennis and Melanie Koch.  We really appreciate BSU football for treating us to the game!

 Waiting for the garbage man is a Monday morning tradition in this household!

 Max at Jabbers.  Precious and adorable as usual.

 Max doing a little grocery shopping. 

Testing the waters with finger foods.  


I spent a lovely weekend in McCall with even lovelier friends.  So much fun to get away for a few days.