Tuesday, December 1, 2015

Ignorance is Bliss

I haven’t been writing blogs as frequently the last couple months.  Things have really been going so well that I haven’t wanted to sit down to write.  Life almost feels normal again.  Jonathan almost feels normal!  The kid’s behavior feels normal… Or at least we aren’t praying about cancer every night.  They are back to praying about normal things like nightmares.  Which is fine with us… it’s painful to know that cancer was consuming so much of their thoughts.  It’s such a relief to see them almost get to be normal kids.  It is so hard not to read into everything they do though.  Jude has been pretty clingy lately.  Never wants me to leave and always wants to know exactly how many minutes until I will return.  Probably normal for a 3 year old, but of course I psycho analyze it.  Is he understanding on some level the ultimate fate of his daddy and so he is clinging to me? 

Tomorrow will be Jonathan’s third trial infusion.  As I write this blog, he isn’t even home.  I sent him off on another bucket list trip just after Thanksgiving.  A boys golf trip in California where he gets to play a few courses most all real golfers will most likely never get to cross off their list.  He will get home around midnight and checks in to the doctor first thing in the morning.  He has to remind me sometimes to enjoy my minutes and not focus on the bad.  He truly is living that every day and successfully squeezing everything good out of the minutes he has. 

He still has not had any side effects from the trial drug that we know of.  He could do this forever if he had to… If we could be so lucky.  Last time we met with Jonathan’s oncologist we began looking at the calendar to schedule his next set of scans.  D day if you will.  His scan should be around December 14th.  I was actually so relieved when Dr. Raj said, well you know what, “why don’t we do an extra infusion and just wait until after Christmas?”  Our life right now is the exact definition of the saying ‘ignorance is bliss.’  If we did not get good news, it would ruin our Christmas.  I would be working on arrangements to moving us to Texas most likely to try to get into this other trial out of Berkley.  I think we all would just rather not know.  He is doing so well, at least it seems like he is.
I’ve asked him a few times if he has any feelings about what he thinks is happening inside his body.  How does he feel?  He said he has pain at the tumor site in the hip.  But it isn’t something that IBProfin can’t manage.  That wasn’t the case in July and August.  He has enough range of motion still that he can tie his own shoe.  Again that wasn’t the case when we found the second tumor.  He gained that range of motion back during those 2 rounds of chemo… He has maintained his mobility at the very least.  He says he still feels nothing in his chest.  I have no idea if you can feel lung spots though?  I haven’t asked or researched that.  But not feeling anything can’t be a bad sign right?  So we are going to stay the course!  We are going to enjoy our Christmas, watch our youngest son turn 4 and then cross off a few more bucket list items before we get that dreaded scan.  It is looking like that will happen around the second week of January now. 

Jonathan called me on the phone 2 nights ago to tell me about his golf round for the day.  I wanted to share a story he shared with me.  It brought tears to my eyes as I talked to him.  First of all, he was so excited.  I could just tell by his voice that he was just in awe that he actually was getting to play his dream course.  I asked how he played.  He said he actually played very well for the first 7 holes.  It is almost like the course designer made it easy to get your hopes up and then puts you in your place.  I said, “so I take it you didn’t finish well?”  He said it didn’t even matter.  The weather was perfect, not a cloud in the sky and it was just amazing to get to play.  I asked how his best friend Scott played.  (I hope Scott doesn’t mind me sharing this)  Jonathan told me that Scott started off not so good so he just stoped keeping score.  This right there is so much of why I love Scott.  He just gets it!  He gets Jonathan.  He decided to walk the course that day so he could take everything in with each step.  It didn’t matter what his score was.  But Jonathan said as he approached Scott on the 18th green, Scott had tears in his eyes.  I can only imagine he gave Jonathan a big brother type hug and I’m so glad that he was there with Jonathan.  He completely enjoyed his minutes and he didn’t let anything stop him from doing that.  He had to make a conscious choice though to make sure that happened.  So many times we think the score matters, but it doesn’t.  It’s the view, it’s the people you are with, it is the opportunity.  Scott if you read this.  I love you!  And thank you!  And Kevin, there are no words. 


On our drive to my parents for thanksgiving Jonathan and I were chatting about things we were thankful for.  You know as horrible as this entire situation is, because horrible doesn’t even begin to tough the service, there are still things to be grateful for.  I told him I feel like we are living the actual Tim McGraw song “Live like you are dying.”  If you have to go young, I’m grateful that we have been able to live intentionally.  Many people will live until they are 70 or 60 and still think they have plenty of time.  So they don’t go live.  And if I get me answer to prayer, I promise you, we will be “living” for the next 40 years. 


As I talk about thankfulness, I read a book a couple months ago that our pastor recommended.  “The Joy in the Journey.”  Sharol brought up this scripture that I really try to remind myself of frequently.  As I talk about my fears and everything that we have been through and may lie ahead, this helps!  2 Corinthians 12:9 “My grace is sufficient for you, for power is made perfect in weakness.”   I had an old friend remind me recently it is ok to be weak sometimes.  

(We had to pull over so the boys could have their first snow ball fight of the winter... yep we are on an off ramp!)