When we were in the hospital delivering Benjamin, we packed several things with us, and one of them was my *favorite* labor and delivery movie...Aliens. No body else will admit it, but seriously, when you're in the middle of labor, you really do feel like shouting out PLEASE...KILL ME!!! Okay, I have to admit I'm strange. But then again you knew that!!
You want to know the funny thing?? That first paragraph has nothing to do with the rest of the post other than that I really, really like the movie Aliens...how's that for random! :P Now...back to the topic at hand... I'm not going to sum up the movie. If you haven't watched it yet...shame on you, you should go out and watch it now and then come back and read this post. (kidding!)
Ripley: Yes, there are, aren't there?
Newt: Why do they tell little kids that?
Ripley: Most of the time it's true.
This week I went and visited one of our clinic buddies at the hospital. Carson is an amazing young man. He loves hunting and softball and he plays a mean hand of Uno. He's the same age as Genevieve. And he has leukemia. Unfortunately, the chemo that is saving his life has also messed up his liver, and for 12 days he's been in the ICU. He's 9 years old and he had a chest tube put in to drain the fluid that's built up around his lungs. His mother is exhausted and struggling through this. She's amazingly strong, but it's been a very long and very hard journey, and there's still more to go.
As if that wasn't enough, this week another Histio warrior lost her battle and earned her angel wings. She had been fighting this beast since 2007 and was waiting for a bone marrow transplant that never came.
And I thought about the quote above. Because, you know, it's true. We tell our children that everything's going to be ok. And most of the time that's true. But sometimes...sometimes there really is a monster under the bed. Sometimes it's called leukemia, sometimes histiocytosis, neuroblastoma. There are many different monsters, and they go by many other names. But they are real, all too real for some kids.
September is a month traditionally celebrated as the time that children head back to school (except, of course, in Georgia where kids start in August!). For most kids, it's a time of excitement and anticipation. September is also Childhood Cancer and Histiocytosis Awareness month. In the coming weeks, I'm going to have a few suggestions for how you can raise awareness about these monsters and also things you can do to make a difference to our bravest warriors who are fighting them. In the meantime, remember to live life to the fullest and continue to pray for all those who battle.
From Misc.
If you've been reading this blog for any length of time, you know that the last year has been...well...long. A year ago, when our little man turned "Terrible Two", we knew something was wrong, but none of the doctors could tell us what it was. It still hurts me to look at pictures of before our little guy was diagnosed. It makes me angry that he had a large lump sticking out of his eyelid for *SIX* weeks and no one even bothered to run a simple CT. Meanwhile, the very cells that are supposed to protect his body from bacteria and viruses were busy turning in on themselves and literally eating away at the bones in his skull (and little did we know, his spine and leg). And then, in a blur, two short weeks after his birthday was the fever, the ER visit, the admission to MCG and finally (after what seemed an eternity) the diagnosis of Langerhans Cell Histiocytosis.
A year of chemo, roids rage, CTs, MRIs, PET scans, bone surveys and several inpatient stays. When I look back on all we have been through this past year, it simply amazes me. Not particularly how much Ken and I have been through, though that hasn't exactly been a piece of cake, but more so our little dude and his sissies. There has been so much for them to go through at such young ages. Benjamin continues to astound both myself and his nurses at how well he handles the pokes and prods that go hand in hand with chemo. He's just so amazingly strong! His sisters have truly blown me away this year! Even when Benjamin has been roid raging (which actually is usually a lot more like really bad PMS), they are so patient and sweet and loving with him. They really do deserve the title "Super Sibs"!
It is difficult knowing that for many years to come, Benjamin's birthday will serve as a reminder of his diagnosis with LCH. It's also hard to deal with the knowledge that there is a chance (roughly 40%) that he will spend another birthday on chemo somewhere in the future. It breaks my heart to know that there is still so little known about this disease (whether it is genetic or environmental, what initiates it...the list goes on and on) and that other children all across the world are having to go through the exact same trials that we went through or worse (I know of several families that have had over 4 recurrences, and several that are having to go through bone marrow transplants!).
Anyway, those are just a few thoughts that have gone through my mind this last week. As far as Benjamin's birthday, it was a smashing success!! A couple of days before his birthday, Benjamin and I were looking at pictures and he saw an old Halloween picture of Autumn where she had dyed her hair black. He got such a kick out of the idea that we decided that it would be fun to give him a new "do" for his birthday. Soooo...we headed over to Party City and he picked out some blue hair color (and a Spongebob balloon...and Spongebob party hats!). Since Momma's a sucker for mohawks, we slicked up the little guys hair and gave him the most fashionable blue mohawk in town! Then it was time for pinatas, cake and presents. It's fun to see how much he gets into opening his present and how genuinely happy and surprised he is! It's nice to see that even though he's been through so much, my little man is still so amazingly happy and fun loving!
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| From Misc. |
Local girls Genevieve and Autumn Knotts headed back to school today. Teachers were unsure whether they would be ready for the academic duo, but are prepared to give it their best effort. The girls mother is quoted as saying "I'm going to miss those girls. What will I do with all the spare time I'm going to have?!"
Okay, okay...so it wasn't quite important enough to warrant local news coverage, but today *is* a momentousness moment! For the first time ever, both of my big girls are going to public school this year! Last year was very disruptive, to put it mildly, so as I've mentioned before, we decided to put Genevieve back in public school. To be honest, it was a difficult decision. We have a fabulous public school, but there's just no way you can match the one on one environment of home schooling. However, since Benjamin's still finishing up his chemo, we decided that the girls would be less impacted if we sent them back to a brick and mortar school.
This morning I packed up the girls and we waited out on the curb for the bus. It was a very exciting time for the girls. It's kind of funny seeing Autumn walk Genevieve through what the school day schedule would be like. And then it finally came. As the bus rolled up to the curb and the girls gave me their good bye hugs, I felt a mixture of emtions. Pride at the brave young women that my girls are becoming...at the strength they have shown this last year. Anxiety over the whirlwind of adjustments that Genevieve is going to have to make this year. And maybe, just maybe a tinge of guilt.
