Back To Reality...

Tonight I am writing this blog as I sit on the airplane on our way home from Kauai.  Jude told us he wanted to go to Hawaii for his 4^th birthday, Jonathan and I had no objections.  Considering what was to lay ahead of us, we wanted to have some fun with our entire family.  We did have an amazing trip!  But I’m sick to my stomach that I now am headed home back to real life.

In the last 9 months I feel so grateful that we were able to have 6 really wonderful months with the boys.  We did have a really horrible 3 months in the middle, but quality of life is a very real thing.  Today I do not regret our decision to stop chemo and try something different.  Jonathan and our family are successfully making the very best of every minute we are given.  I’m so grateful that we have been blessed with the ability to do this.  There have been some wonderful people in our life that have assisted us in fulfilling bucket list items, or just giving us needed encouragement.  We are experiencing the definition of quality life.

Before we left for Hawaii, we had a good and bad Christmas.  We have had a great time in the snow with our boys and got to see a wonderful white Christmas that we spent with our entire family.  But I heard my niece tell me a quote as she was joking about selecting colleges.  “Fake it ‘til you make it!” she said.  I totally know what she means.  Jonathan and I had had a very sad week leading up to Christmas, and truth be told, we were sort of faking it through Christmas…  We had a couple hard hits just before Christmas, and today as we come home to reality, the hits keep coming.

About a week before Christmas we got a call from our new friends, the Davis family.  Ryan is a few years older than Jonathan and has been fighting osteosarcoma for almost 4 years.  We instantly connected with them as friends as we finally met someone that so deeply knew what we were going through.  They were an amazing family with amazing hope and love for God.  They told us just before Christmas that Ryan’s last scans were very bad.  They had been told to call hospice.  By Christmas day they had drained 10 liters of fluid from his abdomen in a 5 day time.  Today as Jonathan and I boarded our plane to come home we got word that Ryan no longer was in pain and has gone home to be with our heavenly father.  He has an incredible wife, and 3 children.  I am heartbroken for their family, and I cannot tell you how hard this is for Jonathan and I.  We fear this is a glimpse into our future.  (If you could please say an extra prayer for the Davis family tonight)  He had 1 month from his very bad scan…

We also have been struggling with other bad news.  3 days before Christmas I got a text from a fellow cancer patient’s father.  “Did you hear Dr. Raj just quit?”  Yep that’s right, Jonathan’s oncologist for the last 2 years is no longer our doctor.  With that being said I know he wouldn’t just quit without talking to us.  Something is up, but nevertheless, we are going to have to figure out this hurdle.  To be honest, this is also really bothering me.  Dr. Raj is more than just our dr.  He has become a friend.  He knows our kids, he really knows us, and he cares about Jonathan.  I know there are other doctors, but right now as we enter this hard stage, I feel alone without Dr. Raj on our team. 

So after a wonderful Christmas Eve, and a wonderful Christmas day, I put my 3 boys to bed and I went back out into the living room.  Then I had a little break down, as I sat with my dad and just cried.  I don’t want to do this anymore.  I had a feeling Ryan would not be with us when we got home.  Hearing about everything they were experiencing is terrifying.  I knew we had this wonderful trip planned to Hawaii with our family, but the day after we come home Jonathan is getting scanned again.  I always feel sick around scan time… and oh, we don’t know who our doctor is that is going to tell us the most important info in our life!  We do know that the Drs in Houston have all of Jonathan’s test results.  If his scans are not good, we will be sending the scans to Houston for them to review and hopefully accept Jonathan as a candidate for their trial drug.  If his tumor burden is too high, or in a place that a side effect such as swelling would cause a fatality, they will not accept him into the study.  At this point, we have no plan C.

I will post again after we have time to digest Jonathan’s scan results and potentially have a plan.  Please pray with us for positive news that this trial drug is working.  It has been wonderful so far, and Jonathan has only just began to experience side effects this last round.  They were similar to food poisoning and only lasted 2 days.  That is doable compared to chemo… and he has only had that once in 3 months! 

I will leave you with 2 significant pictures from our vacation!  Two of Jonathan's bucket list items were marked off on our trip.  The first, take a helicopter ride with our boys.  The second, swim in a waterfall with the boys.  Thank you for your prayers over the coming days.  We really do appreciate it!