What a difference a year makes.

Today on Facebook I was reminded of where we were one year ago and how much hope we had.  We had just arrived in Cologne Germany and Hollis had his first round of Immunotherapy at the IOZK clinic.  We met several other families, including the Martin family from Ireland and their daughter Doireann, who was also battling DIPG.  There was promise that maybe this treatment would save our children and spare us from a horrible fate of watching them slowly die.  We had a lot of good times visiting friends, walking the city streets and enjoying our family.  In the back of our minds we knew that our children may die, but you have to detach yourself from that and enjoy every moment you can.  I couldn’t let Hollis know that death might be the outcome but just pretended we were on a big adventure to kick cancer in the butt.

Last night we said goodbye to our dear friends, the Hurfeld’s, who hosted us in Germany.  They came across the ocean to visit us and we were so very grateful. We were able to spend several days showing them the beautiful state of Arizona and how many cacti really do grow wild in the desert!  Without them, the treatment plan in Germany might not have been possible.  They gave us a place to stay and helped us acclimate to a foreign city.  They would often meet us at the airport and make sure we had everything we needed for the stay.  Hollis thought of them as family and loved them like that too.

Now, a year later we are waiting to hear from TGen, where they are currently researching his donated tumor.  We hope they will be able to tell us what impact the treatment had on Hollis and his cancer.  Did it give him the Most Best Days?  Would he have lived just as long and just as well if we hadn’t undertaken this global effort?  Should we have used that time to do more “bucket list” stuff?  Should we have pulled him out of school and spent every minute we could with him?  These are just some of the many questions we wrestle with everyday.  It’s hard to feel much hope or excitement for the future now.  I feel foolish looking at these pictures of last year and remembering how we thought maybe we could beat this horrible disease.

The fact remains that he did not suffer long, maybe just hours.  Compared to most of the DIPG stories I follow everyday, that alone is a miracle.  I thank God everyday for that, even if that’s the only time I talk to God.  I’m still pretty mad at Him about this whole situation, but I figure He is big enough to understand and is just waiting for me to return to prayer how I once did…

 

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