Back to the beginning of this story #1


Why go back? Because…all of these things lingering about my experience are haunting me. It was traumatic and I can not forget what I do not share. I want you there with me. I want more than anything for you to understand.

This photo was taken right after the diagnosis of “mass in the brain” was told to me. I was with my best friend that night at the emergency room.

The first thing we did was pray. The doctor said, there is a large mass in the brain. I said, oh shit, GOD NO! (lets just be real for a moment) if you saw what I saw on that scan…there was very little brain and a lot of tumor. it took up over half his brain cavity. Sorry God, and then we prayed. We prayed that God would have his hands on my son and whatever would come of this situation. I prayed with the doctors and prayed for their wisdom and healing ability.

After one day of mri’s and scrutiny, John was going to surgery. We had 12 hours to spend with him not knowing if he would make it through. There was a definite possibility of death. I sat with Luke, Jimmy, Mark, and Steve through two agonizing nights with little sleep. Much talk about God and where we were in the very moment when things were happening.

From the night John was admitted to CHOP until his surgery began was about 52 hours with no sleep. We all sat and talked. We confessed our worst fears and like Job’s friends, we sat together saying nothing for hours on end. I said goodbye a hundred times to my sweet child and held him. I tried to memorize every bit of his body so I would never forget. I couldn’t contain my tears if I tried. It was absolutely heartbreaking every time I began to think about my son’s head being cut open. If I began to think about the monster his skull contained. I was stifling tears and holding back sobs as the emotion escaped my eyes in small tears. one by one they fell. one by one they betrayed my fears and pain. we all felt that way that night. the 5 of us in that room. we all cried and were afraid.

Then the real pain began. I can only describe to you what it is like to wait for surgery to finish. 10 agonizing hours of wondering if your child is dead yet and no one has been out to tell you.

we alternated singing together with prayer every 15 minutes on a timer for 10 hours. we sang and lifted our tears and voices to The Lord. We were all scared and talked of everything except what we were all wondering and thinking. There were about 20 people in the room with occasional prayer worrier visitors and pastors. We remained for the long haul. We knew we were right next to the operating rooms and sang in unison praise and worship songs, hoping the surgeons would hear us.

When the nurses updated us the first time it was that 1% of the tumor was out. The next 4 updates were that things were “progressing”. That was a horrifying update. It was vague and scary. We asked questions but no one knew anything more. When the nurse finally came in and said they were finishing up.

We sprang up and moved to the door outside our private waiting room. We figured out pretty quickly that we could see the patients beyond being wheeled to a private elevator through a pair of double doors that were locked. So we took station and waited. Carefully watching from every angle for a gurney containing my sweet little 3-year-old boy. It was hard to wait….I sweated…I cried silent tears….i prayed that he was one being wheeled to a room and not dead. It was a struggle to stand there and wait. watching gurney pass 200 ft away behind glass.

Enough for now, love




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