BITTERSWEET

Today was Dylan's last day of his radiation treatment! It is definitely bittersweet. This is the last conventional treatment option they offer him. They want him to come back in a month for an MRI to see what the treatment has done to the tumor. In addition to his radiation he has to go to Primary Children's once a week for blood work and vitals. So far all of his counts have been great! Last week the person that went to draw his blood reached for a needle and went to put a line in his arm and Ryan asked what he was doing and he told them he would probably need it for a blood transfusion. Apparently that is very common at this point. However, they pricked his finger and everything looked great! I am impressed with how well his little body has tolerated his treatments. He continues to be extremely tired at times and gets massive heartburn but other then that and losing parts of his hair, he has done well! I am a little concerned with his balance and speech the last few days though. He seems to have gone a backwards in that department. We were told it is normal to have good days and bad days but I am not going to lie, it isn't very encouraging when you don't see things continually progressing as you would like them to. BLAH. I really hate this.

We are continuing to treat him with homeopathic supplements and have consulted with a variety of doctors. We have him on some alternative treatments as well. I like to think that part of the reason his labs have come back good are because of what we are doing outside of protocol. We are still considering a few alternative clinics and trials although DIPG's don't hold much promise. I can't even explain the frustration I feel towards the lack of research and options that are provided with this disease. It is frustrating to realize that I didn't even know that a gold ribbon represents pediatric cancer awareness. Did you know that? We all know what the pink ribbon stands for. Unfortunately every day many children are newly diagnosed with cancer. Ours unfortunately having a terrible prognosis. It makes me sick to read about others who have done this before Dylan and recently I have been having a really hard time processing it. Maybe it's this crappy weather! It doesn't do much for the spirit. I hard a hard time on Easter. Maybe it will be the holidays. Maybe it's postpartum! I don't know. It all stinks. I feel like I have done pretty good job staying optimistic and positive but today I feel like pouting a little! And I'm not even the one who is sick! Hopefully this is just a small wave that will soon pass and I can get back to looking at things from my usual positive perspective.

On a lighter note, we got the cutest visit last week from sweet Dakota Friedli. He and his family stopped by on the way home from the hospital. He is the cutest 3 year old you will ever meet. Last November he was in a freak accident where he was trapped under a fence for somewhere around 26 minutes without oxygen. This has left him unable to do almost anything. Except look at you with his beautiful blue eyes and occasionally smile the cutest smile you have ever seen. You can feel his little spirit radiating inside his precious little body and we have all fallen completely in love with him. It is interesting to think that while both of our situations are totally different, both of our families lives were changed in an instant forever. Anyway, he and his most amazing mom and dad brought Dylan an autographed football from the Denver Broncos. It had everyone's signatures on it! That meant the world to Dylan! I continue to be overwhelmed by the kindness and compassion that is shown to Dylan and our family. Speaking of kindness and compassion, we again need to thank everyone that organized the Todd Morrison Alumni Tournament and everyone that supported it! We were shocked at the amount that was raised for both us and the Friedli family. We come from such an amazing community.

We will continue to strive to take things one day at a time. Often it feels like a day lasts forever and time slows down. A friend of mine pointed that out to me and believes that it is a gift from our Heavenly Father. I agree. I cherish every day I am able to spend with my family. Even those days I feel like locking myself in the closet and screaming at the top of my lungs! I still believe I signed up for this. I don't think at the time I understood how hard it would be. But whatever it takes for us to be an eternal family is something I will agree to endure to attain that. Thank you again for the love and prayers that are abundant. They continue to keep us afloat during the most trying time of our life.