It's Friday again and we are off to the clinic. Our appointments are always early -- for me 7:45 is the crack of dawn! Today will be relatively short compared to the last two Friday's. Today Johnny only gets his vincristine and a bone marrow biopsy. We should be home fairly early!
TCH is an incredible facility. It is completely geared for kids, hence the name Texas CHILDREN'S! It is very colorful, arts and crafts tables are everywhere, video games, movies and the Cartoon Network are on every TV. So when the doctor's said the word "clinic" to me during our hospital visit, I had something entirely different in mind. I pictured a clinic with cold tile floors, a bunch of out-of-date chairs lined up, and pictures from the 70's on the walls. Not at all what TCH really looks like. I hope that no one else has to experience what we have, but if you do, TCH is the place for kids!
When you check in you are given a pager (like you get at a chain restaurant when you wait for a table). Once we are paged, we go to "Band-Aide Junction", or what adults would call the "lab". There is a huge fish tank, with all sorts of beautiful tropical fish. Once Johnny has his IV put in, we go back to the Leukemia "Pod". Each blood disorder has it's own "Pod", where the doctor's come and see you. If you have Sickle Cell Anemia, you are in the Pink Pod, Leukemia is red, there is also a blue and green pod for two other diseases. And then we wait. For about an hour. The reason it takes so long is, with Johnny's type of Leukemia, and the blood that is drawn from Band-Aid Junction, a technician has to count each of this cells -- by hand. Each red, white and platelet cell. It won't always have to be this way though. It's just that his counts are so low that a machine cannot correctly read them.
This visit we meet Cara our PA. We chat and discuss Johnny's counts. Then I get the feeling that this IS the visit. I thought Cara would come in, talk and then the doctor would come in. So I asked her if we were going to see the doctor today, and she said no. I guess my reaction of "Oh!" was a little rude. Because after that Cara told us all about her background, PHD, and from that point on, I couldn't understand a single word she said to us. I think she was trying to reassure us that she knew what she was doing. I didn't doubt that, I just thought at each visit we would see Dr. Mahoney, kinda like when we go for check-ups at the pediatrician's office. But I guess that when we have an appointment that isn't earth shattering, we will see Cara. Today is just a bone marrow biopsy.
Mike later told me how rude I was to Cara. I truly didn't mean it. I just have a really bad habit or reacting as I feel. I'm not a good one to hide it. If I try to hide it, I am way to transparent!
Because Johnny's counts are low, he needs a transfusion. He needs whole blood now. His red blood cell are 7, and to do procedures the anesthesiologist wants them to be at least 9. For healthy kids it should be between 11-14. His white blood cells are at 50. Normal should be between 1000-1,500, and his platelets are 56, and should be 150-450. Johnny is low on everything. Cara checks to see if the anesthesiologist will do the procedure with the IV "hanging". Meaning the transfusion is almost done, but it is still hanging. He will! Great!
We go down to PACU (Post Anesthetic Care Unit) and wait for our turn. It's almost 1:00 and we are all starving. Johnny is quiet the whole time. He never complains, but never talks either. All he says is that he can't wait for his Mighty Kids Meal. As we sit and wait our turn, I look around the room. Toys are scattered EVERYWHERE. Wagons, Green Machines (yes, they still make those things), trikes, TV's with video games -- the works. But what I notice the most are the families. Some are lucky, or at least I think they are. The parents all have worried looks on their faces because their child is about to go into surgery, but the kids are older, and appear to have some sort of minor sports injury. I assume that because they are boys, they aren't pulling an IV pole, they appear healthy, and the doctors don't seem to be too worried about it. The kid doesn't seem too worried either.
Then I start to feel like the lucky one. This is when I really like to come here and think that Leukemia isn't that bad. As my eye scans the room I see babies. Tiny, tiny infants. Little tiny infants, so small, you can't even see their little noses over the blankets they are swaddled in. Most have tubes up their noses, and are attached to IV's. All are surrounded by family. Lots, and lots of family, holdings rosaries and stuff. Yikes. This is when I feel like it will be okay and I am strong.
It's our turn and we all go in. I feel better this time because Mike is with me. Johnny is always dressed in what I would call skater clothes. Jeans, Vans, long sleeve shirt under a short sleeve shirt and a sock hat, or skull cap (to me they look like the knitted hats I used to wear up north, except his hats don't have the big pink ball on top). Everyone comments on his clothes and hair. He still has lots and lots of hair. Long hair. He likes it that way and besides he looks really cute with long hair. His hair is so long and pretty, that when people see him they say things like "she". I play dumb and ask "who?" and then they have to look again, or look for his name somewhere. I think it because he is such pretty boy. Joey is handsome, and Johnny is pretty. Like Ashton Kutcher pretty. And besides, his hair isn't that long. When he wears a hat, it MAYBE goes down to the middle of his neck.
Then somehow the conversation in the procedure room turns to the Doodles. Mike is talking to all of the nurses and doctors about our dogs. About surfing, about our trips to CA and Hawaii. I can barely think about the next minute, and these guys are just having a good ol' time getting to know each other. That is how Mike and I are different. He is really good at chit-chating with anyone. Not me. Especially right now. They try and bring me into the conversation, but all I can think about or want to talk about is Johnny. I try my best, but it is half hearted. Then it's time for Johnny to go under. They shoot this thick milky stuff into his IV and he fights it by trying to keep his eyes open. Instead of going out by the count of three, his heart races and we count all the way to 8. I know the little guy is so scared even though he has done this 3 times before, he is scared. Tears fill my eyes again because I don't want him to be scared. We leave the room and get a bite to eat.
I see a mom that we met when we were at the hospital in May. I can't remember her name, but her daughter is a little cutie pie. I remember feeling so sorry for the parents. Not because they are in the hospital (yeah, that sucks too), but because all they did was run up and down the halls chasing the baby with her IV pole. I wish I could remember the baby's name! But she is 18 months old and FULL of energy. After watching her laughing as her parents chased down the halls, I stopped to meet them one day. To find out why they are here.
This little angels story is like all the other child on the 9th floor. She was sick, but her mom didn't know why. Her mom kept taking her to the doctor's, but they couldn't find anything wrong. Her fever would spike, she couldn't eat, she had night sweats, but nothing too serious. Then by chance she spiked a fever at her pediatrician's office and they sent her to the emergency room. Upon arrival, the staff did the routine x-ray. That's when they found the giant tumor that was in her abdomen, and wrapped around her spine, and pushing her vena cava to the side.
When I saw her today, she was scared. All of her family was there for support, but today was their big day, surgery to remove the tumor. Chemo over the past month had shrunk the cancer down small enough for the doctors to remove it. They took the baby in at 11:30 AM and told her that it might be about 6:30 or 7 before they are finished! This is when Leukemia doesn't seem so bad. I hope I get to see her again soon to find out how everything went.
We are called back to recovery and Johnny is waiting for us. He isn't awake yet. But I stay by his side until he opens his eyes. Mike comes in and says that Joel, our friend who works at MD Anderson, is going to stop by to say hi. Johnny wakes up about 3:30 and is ready for his Mighty Kids Meal. We are ready to go. Just like last week, someone from PACU put Johnny in a wheelchair and escorted us to McDonald's without us even asking. Once we get to Mickey-D's I tell them that we can take it from here. I will return the chair to the PACU when we are done. They are so nice at TCH!
We order, and sit and talk. Joel looks over Johnny's lab results from the past month and notes how badly he is getting "slammed". Meaning his counts are so low. It is just amazing to me that the kid can walk around, since his blood is a fraction of where it should be. Johnny finishes his meal and we go home. Liz has the kids at home. We call and tell her we are on our way.
We get home and dinner is waiting for us! Liz gives us the run down of the days events. Joey is at a friends house swimming and my mom took Sophie to a birthday party. Mike is going to G-town tomorrow with the kids, go to the beach, and let off some steam. I will stay home with J-Grom. We eat dinner when everyone gets home. Play a few board games and then call it a night!