Dearest Christian, my chubby-cheeked Godson,
this week, you were diagnosed with hypogammaglobulinemia. Such a big word, such a big disease for a little guy like you. You're almost five, and it's taken as many years to get to the root of all of your illnesses. You were barely three weeks old when you contracted RSV, stopped breathing, and had to be Lifeflighted to a bigger hospital. I've been scared for you since then.
In your five years, you've been hospitalized more than me, Uncle Frank, your mom, and your dad combined. I'm pretty sure that you've taken more medications than than the four of us ever have. Several breathing treatments a day, adult-dosage antibiotics, reflux medications, and steroid treatments are parts of your daily routine. Your mom has taken you from your home in Michigan all the way to National Jewish Medical Center in Colorado twice. You guys were there for about two weeks each time. You're a lot braver than I am, kiddo. You've gone through batteries of invasive tests, some of which I can't even pronounce!
Your mom – she's the best, but I'm sure you already know that. Did you know that we met seven years ago on a message board? We've been through a lot together, your mom and me. We're more like sisters than friends. Sometimes I think we share half a brain. She got me in the habit of saying ridiculous food-related exclamations like Geez oh peaches! and For the love of cheese! And your mom? Well…she thinks she's Black. Turn to her right now and say, "Mom – you know you're a White girl, right? You cannot use Black hair care products and think it's going to make you as chocolaty-stunning as my Aunt Moxiemie. You're vanilla-stunning, but not chocolaty. Okay?" Now give her a great big kiss and a hug. Now, ask her to tell you the story about "Playboy…Penthouse…Hustler!" Go ahead – ask her. Okay, fine. Then ask her to tell you the story about how much gas the average fart contains.
You and your big brother Nick are so lucky to have her for a mom. One of your middle names is Kaiden, which means "fighter." She had a harrowing pregnancy with you. You've been fighting since before you were born. There was a huge vascular placental hematoma that threatened to choke off both your blood and nutrient supply. Your mom had several bouts of pre-term labor. There was a risk of one or both of you being lost during delivery. You're both fighters; you came not a moment sooner than you should have and you and your mom were both just fine. I was so proud to be there with both of you the day after you were born. I would have been there when you were born, but your mom's uterus works at warp speed and you came flying out before Uncle Frank and I could get there.
I wish I could be there now. Your immunologist diagnosed you on Monday and tomorrow you will have your first treatment at the children's hospital in Detroit. Hypogammaglobulinemia – your body's immune system is weak so 1.) it's easier for germs to invade your respiratory system and make you really sick and 2.) your blood is missing the pieces that helps your body remember which sicknesses you've already had. So what this means is that your body doesn't learn how to fight away the germs like other people's bodies do.
I was quite shocked to hear what the treatment is – intravenous immunoglobulins (IVIG). Many of the women who read hear know what that is. Sometimes one or two IVIG infusions are needed to help a woman have a baby. But you're just a little kid and you need this to live a healthier life. And, you don't just need one or two infusions, but you'll need them every 3-5 weeks for the rest of your life. The first few times you're treated, it will be away from home and you'll have at least an 8-hour stay at the hospital for the IV-infusion. I was so glad to hear that after the first few treatments, you'll be able to be treated at home! You'll wear a pump that works much like a subcutaneous insulin pump. Having a 2-hour treatment at home once a week is way better than going all the way to Detroit for such a long day!
I'm all the way down here in Georgia, and I wish I could be there to hold your hand and your mom's while the life-saving blood-byproduct of 10,000 generous strangers is pumped into your body. Since your body doesn't make its own germ fighters, you'll have the germ fighters of an entire army inside of you to kick those germs' grimy butts! So, since I can't be there in person, I can be there in spirit, and so can a bunch of other people. All of my very nice, supportive, kind, beautiful, gorgeous, lovely, amazing friends inside the computer are going to click over to your CaringBridge page that your mom updates and they're going to leave you some messages to read tomorrow while you're having your treatment. I know how much you like to read the comments that people leave for you on your Webpage (I like LOTS of comments HERE on MY Webpage, too!), so hopefully all day, you'll have people from all over the world leave fun messages for you. They'll have to go through a quick and free registration to leave a comment there, so if they're short on time, they can leave a comment here for you on this post, instead.
To leave a message for Christian (like I know you will), from the CB homepage, enter christianwang in the box labeled "Visit a CaringBridge website." Christian loves getting messages of support. I will forever be in your debt if you can help give Christian and Becky something to look forward to as C-Man receives his first infusion. He'll have mom's laptop, so he'll be watching. Tell him Aunt Moxiemie sent you.
What else can you do to help?
Please – donate blood and plasma. Just one of Christian's IVIG infusions (GammaGard) is produced from the plasma of 10,000-20,000 donors. As Becky said on Christian's page:
donations cannot go directly to Christian, they CAN ensure that
children and adults alike suffering from life-threatening conditions
such as an immune deficiency disorder will have access to the
life-saving medicines that they desperately need.
You can find more information about donating blood and plasma on Christian's page.
Thank you, thank you, thank you in advance to those who leave a message for Christian, even if it's just a prayer or a good thought flung up into the universe.