The Journey

November6, 2012..... Election Day. The day we heard the horrible, life-changing, most frightening word in the English language..... CANCER.

Our minds were numb, our emotions running rampant for the next few whirlwind days. Our precious, happy, loving, teasing little boy had *gulp* cancer.  The fight of our lives was on. Scans, surgeries, bone marrow aspiration, biopsies, all searching for the answers the doctors needed to diagnose and begin the mind and body altering treatment that would save our precious Ryan's life. November12 we were given the verdict... Ewing's Sarcoma.

The medical team met with us and gave us the road map we would follow, and told us of road blocks and side effects that most assuredly would come over the course of treatment. Chemotherapy began immediately, and the race for Ryan's life was on.

276 days ago...it seems like years in some ways and just minutes in others. There have been so many changes in those days. One of the first course of action in treatment was putting Ryan on a high steroid regimen. during the steroid phase, he puffed up like a balloon, and gained over 20 pounds.
We were grateful for those extra pounds, because it was not long before he was so sick he could not eat, and the weight dropped off.  He lost his hair. Physically, he does not look like the same little man, but he looks now like the super hero warrior he is.

We have spent 72 nights inpatient at PCMC. Nights that Ryan had to wake up and pee every two hours to clear the poison from his kidneys. Many of those night were spent rubbing his legs that were hurting as a side effect of the chemotherapy. This young boy, who should have nothing more to worry about than passing his spelling test and what prank to play next on his sister, was tied to a hospital bed fighting nausea, having his body pumped full of poison.

Every day for six weeks we traveled the hour long commute to Huntsman  Cancer Center  for radiation to his spine.

Ryan has had about 70 port accesses, a 3/4 inch long needle stuck into his chest to access the port placed in his artery to enable blood draws for labs and to administer the drugs. For a few weeks, he also received TPN feelings through this port because he was so sick he could not tolerate anything in his stomach.

We have give him 97 neupogen shots.... The dreaded "pokeys". He has had 15 transfusions of packed red blood cells and platelets. Ryan has had 4 echocardiograms, 4 CT scans, 3MRIs, and a few ultrasounds. He takes several medications daily, often as many as 12 pills a day.

We have had two stays in the ICU unit, one of those he was connected to the ventilator to keep him breathing.

This has been our journey, our fight, our lives for 276 days. We will never be the same as we were before November 6, 2012. We are stronger, we are more caring. We are aware of the need for childhood cancer research...for finding the CURE so no child has to fight this fight. We have a stronger faith in God, and in people. So many strangers have become part of our family and the outpouring of love,prayers and support have held us up so many times.

July 26, 2013...... Bell Ringing Day! There is a little bell hanging on the wall of the ICS ward where Ryan and I have spent so many days and nights. When a child completes his chemotherapy regimen, the medical staff gathers with friends and family and sings a song and the child rings the bell, telling the world that he has completed the journey!

Ryan's scans show NED (no evidence of disease)! We have beaten the monster! Today at 5:30 pm, he will ring the bell, loud and clear! We invite all of you that have prayed, loved, and supported us in so many ways, to find a bell and ring it with Ryan.

The Journey never ends, it evolves into the next adventure. I do not know what the future holds for my hero Ryan, but I do know that he is strong enough to take it head on. I know that God has this child and our family in the palm of His hand, and that, no matter what the future brings, we will be blessed in it.