Our first "One Year Mark" -- Diagnosis

The day started off normally enough. We woke up a little late and were running around trying to get ready for church. We had to be there early because Richard was ushering that morning, but I was not scheduled to sing. I had already pulled Caleb's clothes out for him and told him to get dressed. I was getting Caden dressed and fussing at Caleb for taking his time getting dressed. He had been taking a long time to get dressed for a couple of weeks and we would fight about it every single morning. He kept saying, "I can't do it." I knew that he knew how to get dressed and thought he was just being difficult. I hollered at him from the other room, "Get dressed NOW! You know how to do this."

"But, Mommy, I can't," he whined. That blasted whining was getting on my last nerve.

We finally got everyone ready to go and headed off to church. By the time we got there, I was already feeling frazzled and needed to calm down. One of the ladies there could tell I needed a little time and offered to take the boys to another room and play with them for a while. I welcomed the offer.

Around 9:45am, I went to get Caleb to take him to his classroom. Berry asked, "Caleb's right-handed, isn't he?"

"Yes."

"Well, he hasn't been using his right hand all morning. He's been using his left hand to do everything and his right hand is just hanging limp at his side."

I said I'd check into it and helped him up. When I touched his right hand, it felt like ice. I reached over to check his left hand and it was warm to touch. I led him towards his classroom and noticed he was having extreme difficulty walking. It was as if he was using pure momentum to propel his right leg forward. It swung awkwardly around as he walked. He was slurring his words when talking and had this glazed look in his eyes. The right side of his mouth was hanging down somewhat and he was drooling a little. I started getting very concerned that something serious was wrong.

I went over to Richard and said, "Honey, I don't think we can wait until tomorrow to take him to the doctor. I'm calling the pediatrician now."

I stepped outside with Caleb & called our pediatrician. After the answering service connected us, I began telling Dr. P. what was going on with Caleb. After I described his symptoms, Dr. P. said, "Stop what you're doing right now and take him to Children's in Plano immediately. I want him there because if they need any scans, Children's is equipped to handle it."

I knew at that point that something was truly wrong. My heart started pounding wildly inside my chest and my stomach constricted. I began to cry, rushed inside to Richard, told him what the doctor said and that we needed to leave immediately for the emergency room. I got Caden from his classroom while Richard slipped inside the sanctuary to tell Pastor where we were going & why.

As we drove to the ER, Caleb was getting very upset in the backseat. He started yelling, "I hate you. You're the meanest parents EVER! I want out of this seat NOW!!!" He wasn't acting normally at all. Our sweet little boy had turned into this raging, screaming, angry child that we didn't recognize. Richard and I started guessing what could be wrong with him. We guessed several things, but weren't even close.

When we got to the ER, we took him inside and began the check-in process. As I was explaining his symptoms, a nurse was walking by the door. She backed up and said, "Say that again." I did and she said, "Come with me right now."

We walked through a full waiting room and went straight back to a room. I know that they take cases out of order based on the seriousness of the condition and I tried desperately not to panic. Within two minutes there was a doctor in the room with us and it was all I could do not to cry in front of Caleb. I didn't want to frighten him, but I knew having a doctor with us that quickly was not a good sign. She asked him his name and he slurred out, "Caleb." She then said, "Hi, Caleb. We're going to play a game now. Can you hold your arms out in front of you like this and pretend to fly like Superman?" He held his arms out and the right one was slightly lower than the left. She then said, "That's great. Now close your eyes." The moment his eyes closed, his right arm fell. She next had him stand up and try to walk along a line on the floor. He couldn't do it. She turned to the nurse and ordered an immediate CT scan.

Caden began fussing so I took him out to the waiting area to feed him. Caleb was already hungry, but they wouldn't let him eat and I didn't want to make it worse by feeding Caden in front of him. Caleb was taken for his scan and shortly thereafter Richard came to get me from the waiting area.

As I walked back down the hallway with Caden, I noticed an ambulance crew hanging out near Caleb's room. I remember saying a quick prayer for the child they were there for. When we went inside, the doctor asked us to sit down. She said, "The CT scan shows a mass near the base of his brain stem. We don't know what it is."

"Is it cancer?" we asked.

"I don't know. All I can tell you with certainty is that something is there. They'll run more detailed scans downtown. We don't have the people on hand right now to do an MRI. We're going to transfer you downtown. The ambulance crew is already getting things set up. One of you can ride with him."

I knew I wouldn't be able to drive downtown and asked if I could ride with him. Richard said okay, grabbed Caden and told us he'd meet us there. He called his mom again to update her and she said they were already on their way towards Dallas.

Then the ambulance crew I had seen outside Caleb's room brought the gurney into our room. I managed to hold it together until Caleb was settled in the ambulance. As he watched Teenage Mutant Ninja Turtles on the ride downtown, I broke down in the front seat.

I thought we would be going to the ER downtown and was surprised when they took us straight upstairs to the Neurosurgery floor. I could barely breathe at this point and was numb. I'm pretty sure Richard was feeling the same way.

Not long after we were admitted to the hospital, one of the neurosurgeons walked in. He told us that because of the location of the mass, there was no way he could operate on it. It was located inside Caleb's brain stem and to even attempt to operate could kill Caleb outright. I tried to comprehend what was going on and felt like the world was spinning around me. I couldn't stand up. He then told us that after the MRI, we would be transferred to the oncology floor and the oncology team would meet with us to determine next steps.

Our nightmare began that day and hasn't stopped yet. It's been exactly one year since Caleb was diagnosed and 6 months/15 days since he died from DIPG. Those two dates -- 10.10.10 and 03.25.11 -- will forever be etched in my mind as the days my world crumbled. I still miss him every day.

Caleb is always in our hearts and is loved today, tomorrow, in ALL ways to infinity and beyond.

Angel, Richard & Caden


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Another DIPG angel's mom wrote this on her blog recently & I thought it very poignant & true:

Tragedy does not wait for permission to enter our lives, it's an unwanted guest and you never know when it may arrive - So appreciate all the moments that are devoid of tragedy- cherish them, capture them and hold them close. My prayer for today is that tragedy stays at bay, that you all have a blessed and happy day and that you take a moment to look up.