We started noticing changes in our five year old son, Caleb, in August 2010. It was a bunch of little things that didn't seem to go together. Everything we noticed was easily blown off as part of something else.
- Headaches? Oh, that's just his allergies acting up.
- Tired, worn down, glazed look in his eyes? He's just started kindergarten & isn't used to going all day every day.
- Slurred speech? It's late in the day and he's exhausted from school.
- Pain in his legs & bruises we didn't know where they came from? He's playing football. You get hit in football & get bruises.
- Uneven gait & overly clumsy? He's a growing 5-yr old.
- Talking back & bad attitude? He's a growing 5-yr old boy.
- Not buttoning, snapping, or zipping his clothes (saying, "I can't")? Regression / rebellion because of his little brother.
It wasn't until the 2nd meeting with his teacher on October 7th that I decided to schedule an appointment with the pediatrician. She mentioned that it seemed that Caleb was working really hard to hold his pencil & it appeared that he was struggling to get the thoughts from his head to his mouth.
Saturday, October 9th, we went to a birthday party for his friend, Jordan. While there, the other parents noted that Caleb seemed really "off." I mentioned that I was planning to call the pediatrician on Monday & they agreed that I should.
Sunday, October 10, 2010, 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, the wonderful woman who was watching the boys, 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 bent to help 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 that Caleb was experiencing slurred speech, a real "spaced-out" look, his right hand hanging limp at his side, dragging his right foot behind him, the headaches, etc., 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. In my mind, I was beginning to think that Caleb had had a small stroke. 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 our 23-month old son, Caden, from his classroom while Richard slipped inside the sanctuary to tell our Pastor where we were going & why.
On the way to the ER, we each called our parents to let them know what was happening. Caleb was getting very upset in the backseat. He would scream such mean things that were not things Caleb would normally say. "I hate you. I'm going to kill you. You're a bad mommy. 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. I started thinking maybe Tourette's. Then I thought back to the spacing out & not looking us in the eye & wondered if maybe it was Autism. I mentioned it to Richard & said, "There's no way he could have Autism, Tourette's, a stroke & developmental delays all at the same time. Something is seriously 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 triage cases 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 greeted us and got some background history. Then she began her exam of Caleb. She asked him his name and he slurred out, "Caweb."
She then said, "Hi, Caleb. Can you give me a really big smile?"
He tried to but the right side of his face didn't move at all.
Next she said, "We're going to play a game now. Can you hold your arms straight 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 at all. She turned to the nurse and ordered an immediate CT scan.
My stomach sank.
Caden began fussing and signing "eat," 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 family and 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 realized at that moment that the family and child I had just prayed for was us. 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.
Caleb's battle with DIPG began that day.
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.
Our journey begins...
Saturday, October 9th, we went to a birthday party for his friend, Jordan. While there, the other parents noted that Caleb seemed really "off." I mentioned that I was planning to call the pediatrician on Monday & they agreed that I should.
Sunday, October 10, 2010, 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, the wonderful woman who was watching the boys, 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 bent to help 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 that Caleb was experiencing slurred speech, a real "spaced-out" look, his right hand hanging limp at his side, dragging his right foot behind him, the headaches, etc., 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. In my mind, I was beginning to think that Caleb had had a small stroke. 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 our 23-month old son, Caden, from his classroom while Richard slipped inside the sanctuary to tell our Pastor where we were going & why.
On the way to the ER, we each called our parents to let them know what was happening. Caleb was getting very upset in the backseat. He would scream such mean things that were not things Caleb would normally say. "I hate you. I'm going to kill you. You're a bad mommy. 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. I started thinking maybe Tourette's. Then I thought back to the spacing out & not looking us in the eye & wondered if maybe it was Autism. I mentioned it to Richard & said, "There's no way he could have Autism, Tourette's, a stroke & developmental delays all at the same time. Something is seriously 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 triage cases 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 greeted us and got some background history. Then she began her exam of Caleb. She asked him his name and he slurred out, "Caweb."
She then said, "Hi, Caleb. Can you give me a really big smile?"
He tried to but the right side of his face didn't move at all.
Next she said, "We're going to play a game now. Can you hold your arms straight 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 at all. She turned to the nurse and ordered an immediate CT scan.
My stomach sank.
Caden began fussing and signing "eat," 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 family and 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 realized at that moment that the family and child I had just prayed for was us. 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.
Caleb's battle with DIPG began that day.
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.
Our journey begins...
NOTE: The posts from October 10, 2010, until October 21, 2010, are posts I created on Facebook prior to creating this blog. They will give additional background.
