I seem to be blogging a lot about Brigham lately. I don't mean to, it just happens I guess. I love all of my boys so I'm thinking it's just the age. 2 yrs old is so entertaining. This weekend, however, was anything but. A bit of an eye opener for me you could say. I need to fill in some new readers if I'm going to explain all this. I don't blog about My kids Immune Deficiency very often even though it is a big part of our lives. Only 3 of my 4 boys have it. Layton, Kelland and Brigham. I was so excited that I didn't pass this on to Jaren. (Yes, it is genetic and is passed through the mother) They have to have IV treatments of B cells to help boost their immune systems to a normal kid every month. The treatments help so much. It is like night and day. But it doesn't mean they will never get sick again. It just means that it's not as frequent. The real truth is that this immune deficiency is pretty rare. And because of that they really don't know a lot about it. They are still learning. It is called X-linked Agammaglobulinemia or XLA. Because my children can't produce enough of the b cells to fight off infection they are at a higher risk for getting sick. Not just small stuff like upper respiratory infections but also big stuff. Like pneumonia, meningitis and even cancer. The treatments help the risk to go down. But I think the Doctors are still concerned for the worst scenario.
Brigham had the flu last week with a fever and an achy body. His fever broke and a small nose cold set in. And by Friday I had noticed that the left side of his neck was swollen. And when I felt his glands I felt a golf ball size rock where his glands would normally be. I was concerned because this was obviously abnormal. But at the same time he didn't have a fever anymore and appeared to be feeling better. So I called his ped. Dr. To see if he should be seen. A nurse assured me that this is common sometimes after a cold and to treat it with Motrin. His doctor, however, called me after hours and explained that because of his immune deficiency he really should've been seen and we need to go to the ER right away. Don took him that night. They decided that it was probably Limphitis and gave him an IV antibiotic. Then sent him home with a prescription and a follow up Dr appt. for Monday. By Sunday he was doing a little better and it seemed as though the swelling was starting to go down. We went to church and I was telling some friends about what was going on. One of my friends started to get teary eyed as I was explaining and said that is really scary. She had a daughter about 3 yrs ago die of cancer. And she said that's how it all started with her. Everything seemed to mimic exactly her experience with her daughter. Where the lump was on the neck, what they did and said for her daughter, what we did and said for Brig. What the doctors did and said. Even the same antibiotic. The only difference is that the lump appeared to be getting smaller and her daughters didn't. Knowing that my children are at risk for things like Cancer I was terrified all the sudden. I hadn't considered it being something like cancer. And it hit me hard. I didn't want to over react. I just kept telling myself that this wouldn't happen to us. It will be ok. But all I could think about was I know that Jennifer (my friend) thought the exact same thing with her daughter. I told Don and he was just as concerned. We considered taking him back to the hospital to get some answers. But decided to calm down and wait for the Dr appointment the next day. We were very uneasy all day Sunday. As much as you tell your self not to think about it you always do. By Monday the swelling had definitely gone down. And I was feeling much better about it not being cancer. And the Dr was pleased as well to see that it had gone down. I didn't realize how pleased until I asked her the Cancer question. I asked her if this could be cancer. She admitted that she was concerned about it being cancer. Because kids who come in with Lymphitis (especially with how bad Brig was) they don't act like he was acting all energetic and calm. They have high fevers and have to be admitted to the hospital to control the pain and the swelling. So she was concerned that it was something else but needed to rule out the lesser of the two evils. At first I was kind of embarrassed to ask. Not wanting to look like one of those extreme moms. But when I realized my feelings of concern were confirmed I had mixed emotions. Part of me would rather be the crazy, overly obsessed mom. And I was a little upset with them for not telling us. I know that they didn't want to upset us if there was nothing wrong. But I feel as though I need to know so next time I wont just call the Dr to SEE if he should be seen but demand it. I realize that my kids are still pretty vulnerable. Even after their treatments. And I know I can't go through life, waiting for Cancer to hit. I don't want that. But I want to be aware. And knowledgeable. So that when we come across a nurse or Doctor that doesn't quit understand their condition, (which happens way to often) I can be the one to have the knowledge and confidence to speak for my children's well being. So it seems to only be Limphitis. And he is on a strong antibiotic for the next 3 weeks. Nothing to worry about. It was just a scare. But one that has changed how I look at this crazy thing. In some ways I feel more in control. And that would be the silver lining in this cloudy, scary weekend.
