The last week has been fog to begin with, followed by the reality that life is just not fair. My life has never been easy, and I believe I am a stronger person because of it, but this week makes me wonder how much a person can handle. I have read the blog and talked to ViviAnne's parents, and heard how they went through three months of tests before they were told it was cancer. I have seen this same thing on TV - test after test and finally they find the cancer. I thought this is how it worked. Well I am here to tell you that was not the way it was for us.
I picked CJ up from his dad's on Thursday afternoon. CJ had been sick for over a week. It was strep throat - I was told it was just strep throat. We had him on antibiotics and he was getting better. He was still a little pale, but he was eating and playing again. When I got to his Dad's CJ looked pale. His dad told me he hadn't wanted to eat and had just slept most of the three days he was there.
I took him home and fixed dinner while he just sat in the chair and watched cartoons. Then I took his temp, 102.5, so I called the doctor. They just happened to have an appointment in 15 minutes. They tested for strep throat again, and the flu - both tests came back negative. Our doctor wanted a blood test to be on the safe side. He said he would call us when he got the results, which would probably be tomorrow.
We went to Harrison Co Hospital to get the blood test, then home. CJ went right to bed, and Hunter went to bed shortly after that. As I was cleaning up the dinner dishes the phone rang. It was the doctor's office. CJ was very anemic. We needed to go to the ER and retest just in case it was wrong, but if the test wasn't wrong something needed to be done tonight. I was in tears - my poor little boy. What was wrong with him?
Greg's mom came to watch Hunter. Greg, CJ, and I went to the hospital. All they could tell us at the ER was he is a very sick little boy. But how sick, no one would say. The doctor came in and let us know they had to put IVs in him, at least two. They started running antibiotics in him, a total of four. Then they had to give him blood. But still all they would say is that he is a very sick little boy, and they had an ambulance on the way to take him to Kosairs. The doctor who was working past his shift now, told us he was coming in the ambulance with us. Now I am scared. I was worried before, but they don't want to take a 30 minute ambulance ride without a doctor. That scared me! All I could think is two weeks ago I had a perfectly healthy, active four year old boy.
We get to the Kosair's ER, and that is when we hear it. "We are 95% sure it is cancer. We have to test the bone marrow to find out for sure". By this time it is after 1 am on Friday morning. And I come apart and pull myself back together every time CJ slips in and out of sleep. He is scared enough, he doesn't need to see me cry.
From the ER we go to ICU and do the bone marrow test, and get more blood. I ask how they know it is cancer and not something else? Well in a lot of cases only the white cell count, or the red cell count is low so that could mean lots of things. But in CJ's case not only are the white cell counts and the red cell counts low, so are the platelets. That points to one thing. Now we are getting moved to 7 west. I have heard of 7 West before. That is where ViviAnne goes when something is wrong.
I picked CJ up from his dad's on Thursday afternoon. CJ had been sick for over a week. It was strep throat - I was told it was just strep throat. We had him on antibiotics and he was getting better. He was still a little pale, but he was eating and playing again. When I got to his Dad's CJ looked pale. His dad told me he hadn't wanted to eat and had just slept most of the three days he was there.
I took him home and fixed dinner while he just sat in the chair and watched cartoons. Then I took his temp, 102.5, so I called the doctor. They just happened to have an appointment in 15 minutes. They tested for strep throat again, and the flu - both tests came back negative. Our doctor wanted a blood test to be on the safe side. He said he would call us when he got the results, which would probably be tomorrow.
We went to Harrison Co Hospital to get the blood test, then home. CJ went right to bed, and Hunter went to bed shortly after that. As I was cleaning up the dinner dishes the phone rang. It was the doctor's office. CJ was very anemic. We needed to go to the ER and retest just in case it was wrong, but if the test wasn't wrong something needed to be done tonight. I was in tears - my poor little boy. What was wrong with him?
Greg's mom came to watch Hunter. Greg, CJ, and I went to the hospital. All they could tell us at the ER was he is a very sick little boy. But how sick, no one would say. The doctor came in and let us know they had to put IVs in him, at least two. They started running antibiotics in him, a total of four. Then they had to give him blood. But still all they would say is that he is a very sick little boy, and they had an ambulance on the way to take him to Kosairs. The doctor who was working past his shift now, told us he was coming in the ambulance with us. Now I am scared. I was worried before, but they don't want to take a 30 minute ambulance ride without a doctor. That scared me! All I could think is two weeks ago I had a perfectly healthy, active four year old boy.
We get to the Kosair's ER, and that is when we hear it. "We are 95% sure it is cancer. We have to test the bone marrow to find out for sure". By this time it is after 1 am on Friday morning. And I come apart and pull myself back together every time CJ slips in and out of sleep. He is scared enough, he doesn't need to see me cry.
From the ER we go to ICU and do the bone marrow test, and get more blood. I ask how they know it is cancer and not something else? Well in a lot of cases only the white cell count, or the red cell count is low so that could mean lots of things. But in CJ's case not only are the white cell counts and the red cell counts low, so are the platelets. That points to one thing. Now we are getting moved to 7 west. I have heard of 7 West before. That is where ViviAnne goes when something is wrong.
Now that we are up in our room on 7 west they have put in a port and do a spinal tap. Doctors, nurses, therapists, the hospital chaplain, the clinic nurse, child life and everyone else is just coming in and out of the room. I am getting information thrown at me, and they all ask if I have any questions. I have no idea what I am dealing with so how do I ask questions? All I want to know is, why my kid?
On top of all this I realize I can't go to work while he is having treatments. He can't go back to school for a couple of years. We just lost one of our incomes and are going to have tons of medical bills coming in. This is just too much for one family to handle at once. As the days go by and I learn more and more each day the fear is filled with knowledge. I am still scared to death, but at least I know what to expect.
On top of all this I realize I can't go to work while he is having treatments. He can't go back to school for a couple of years. We just lost one of our incomes and are going to have tons of medical bills coming in. This is just too much for one family to handle at once. As the days go by and I learn more and more each day the fear is filled with knowledge. I am still scared to death, but at least I know what to expect.
Sheree - although we can't be there to sit with you and CJ in the hospital, please know you are not alone. You married into a great big, loud family and every last one of us is fighting this damn cancer with you. We'll take care of what you cannot... money, food...whatever. We love you guys!
ReplyDeleteOK, let me add to Sheree's post. I am CJ's grandma, Mammaw, to be presise.
ReplyDeleteOn March 5, 2009 I was heading off to my own grandmother's home in northeastern Ohio. CJ's aunt and I had planned a short time away from home several weeks ago. I was leaving on Thurs and she was coming up on Sat with a friend. I stopped at Craig's house to see CJ (or Craig Stephen as I call him) because Uncle Bradley had told me Craig Stephen was still sick and had been in bed almost the entire 48 hours he had been with his dad. By the time I got there, Craig Stephen was with his mother and Craig Sr told me she was taking him back to the dr to be re-checked.
I called Sheree and she had just gotten home from the dr's with CJ and she told me they had done blood work and he was "very anemic". I know what anemic is and my first thought was, "did they test him for mono?" I know that mono and strep throat go hand in hand many times, and with CJ's just wanting to sleep, I just thought that was what he had. But Sheree said all the dr said was his counts were all on the low side but he was extremely anemic. Personally I thought this was a strange diagnoses.
About an hour north of Cinncinatti Sheree called me and told me they were in the ER. She said the dr's office had called and told her to bring CJ to the hospital, have a bag packed and be ready to spend the night. I told her I'd turn the car right around and head straight back right then and there. She told me to go on, the dr hadn't even seen him yet, so she still didn't know what was going on. Again I was thinking how strange this was. My first thought was if he was that anemic possibly he needed some blood...not the sort of thing I'd wish on anyone, specially my own grandson, but it is something that can be taken care of fairly easily.
A could of hours later Sheree calls to tell me they are taking him to Kosair's. By this time I was 6 hours into my drive and only about an hour and a half away from my grandmother's. I told her I was going to continue on since I would need some sleep before driving back. I had asked her what the ER dr's had said and she just repeated what the family dr had said earlier, low counts, extremely anemic.
This didn't make one bit of sense to me. WHY couldn't Harrison County give him a blood transfusion if his counts were that low? WHY did he need to go to Kosair's? They don't send children to Kosair's for anemia...this was scaring me. I didn't mention any of this to Sheree because I knew she had enough on her plate already. I didn't mention it to Craig Sr either when he called to tell me what was going on...but I knew it was serious. And I was scared. That last leg of my trip was driven in such a blur because all I could think of was "My Boy, My Baby" (even though he tells me he isn't a baby anymore). I know how stubborn CJ can be (he does have Polish blood in him) and I also know that he can't stand to take medicine 99.9% of the time.
The next morning I got the call from Sheree. They were pretty sure he had cancer. While it was what I had expected, it can't compare to hearing it confirmed. I had so many thoughts and feelings running through my mind and my heart at that moment there isn't any one that even stands out. They were ALL heartbreaking.
Sheree said for me to just wait to come home since they still didn't know much. I knew that there were lots of other people, including CJ's Pappaw, that would be at the hospital, and if it were really bad I'd be there in 6 hours-or less-if need be. Being a mother, and being through 2 serious hospital stays with 2 of her own children, I knew what Sheree was going through, and what she would go through, even what she has yet to go through. I made the decision to stay away.Of course, I talked (and still talk) to Sheree at least once a day and also to Craig Sr, Pappaw, Kristy, I think at one point I even talked to Greg, so it wasn't as though I wasn't informed, I was.
When I came home on Thurs, March 12th, I stopped to FINALLY see Craig Stephen. I wanted nothing more than to wrap him in my arms and take it all away and make him better. He had other ideas. He didn't want to see or talk to ANYONE that day. So after maybe 10 minutes I left, brokenhearted.
This Monday they are suppose to do another bone marrow test, so I know it will be another day or 2 before he'll hopefully feel up to company again. I don't visit anyone in the hospital on the weekends because that's the time most people are able to visit and I know it can tire not just the patient, but the parents out too.
Personally, I am with Sheree, WHY? Why is this happening to this precious child of ours? I know I can't let him see my fear or anger or it will scare him, and while the prognosis is good, it is still so much for a little boy to go through. I just want him here, with us, watching ET or walking through the woods, going on adventures along the creek, riding his bike, swinging his sword and wearing his "farmer" (armour) or his Superman suit or Spiderman Suit or Batman suit. Not that he needs any of those suits, he's our Super Hero everyday and he'll fight this like he fights the 'bad guys', and he'll come out the winner.