For those of you that don’t know our family, let me introduce us: There are Blaine and Kristie (that’s me) the “supposed” grownups in the group; Brayden, our oldest daughter who turned seven last month; Kellen, our son who will turn six this month; and of course Kendrie, who celebrated her “half” birthday today, turning four and a half. (When you are this age, the “half” is very important!)
So we have been parents for slightly over seven years. Parenthood is not something we backed into or stumbled into or fell into. It was anticipated, hoped for and worked for. And while we were basically prepared (no stopping on the way home from the hospital for diapers …. We had plenty already!) there were a few things that took me by surprise, no matter how much the veterans of the parenting world tried to warn us.
Surprise Fact #1: You really, truly DO love them more than you thought possible. Parents everywhere (at least the good ones, anyway) understand exactly what I mean. And when your child is diagnosed with a life-threatening illness, that love goes deeper, stronger, more desperate. Of course, the flip side to that is when the dog is barking and the dinner is burning and the kids are fighting and the house is a mess and the phone is ringing and then you step on a lego, one of the really pointy ones that hurt your foot … well, then those same kids can really annoy you more than you thought possible, too, but for the most part, you feel the love.
Surprise Fact #2: They are WAY more work than anyone warned you. Initially I thought it was because we had three kids in two and a half years and once they were out of diapers things would slow down. But we traded diapers for potty training, and went from potty training to pre-school, then to real school, now we’re in Scouts and sports and I serve as a taxicab and helping with homework not to mention the housework and cooking and shopping and the laundry, good GRIEF the never-ending mountains of laundry!!! But of course the minute one of them snuggles on the couch to read a book with you, it’s all worth it. And since Kendrie’s diagnosis, let me just say there has been LOTS more snuggling than there even used to be.
Surprise Fact #3: You worry more than you thought possible, too. Used to be, we worried the “normal” parent worries, about things like saving for college, the state of the world, were they eating enough vegetables, wearing their bike helmets, things like that. Did we worry that one of our children would be diagnosed with leukemia? Nope, never crossed our minds. But it happened, and brought on a whole new set of worries. Short-term worries, not too serious, like Dear GOD don’t let me run out of Mac & Cheese while she’s on a steroid pulse, and, what if her hair grows back in curly and I don’t know how to fix it? Worries about the side effects from chemotherapy. And of course, the biggest, most frightening worry of all, one that all cancer-parents universally share, the worry that the chemo won’t be enough and your child will relapse. Because no matter how much you love them, or how hard you are willing to work, a relapse can happen at anytime, to anyone.
I think this worry is especially strong for me right now due to circumstance: two great kids we have gotten to know online relapsed this past week. That brings the total to six in the five months since Kendrie was diagnosed. And of course, that’s only the six that I know. Obviously there are lots more out there.
Having relapsed, do these kids still have a fighting chance? Of course they do. It’s just that their fight gets harder, longer, more painful. More frightening, and of course, more worry for their parents. If you have time, please stop by their sites and leave a note of encouragement in their guestbooks.
Julianna Banana Julianna was diagnosed with ALL on September 4, 2003 and relapsed less than four months into treatment, on New Years Eve 2003. Julianna’s dad Terry is fast-becoming something of a Caring Bridge comic legend, so visit their site and sign her guestbook, but I warn you to wear Depends as you read back through her journal history. Also consider getting one of her pink wish bracelets, to show your encouragement for Julianna. (I’m waiting patiently for mine to arrive ……….. hint, hint!)
Cameron --Cameron relapsed on December 9, 2003, and is preparing for his upcoming bone marrow transplant, with his brother Chad as his donor. Please stop by their site and wish the family well as they head to Philadelphia for his transplant.
Lakota-- Lakota was originally diagnosed with ALL on September 29, 2002 and relapsed only a few days ago. Sadly, Lakota has already lost a brother to leukemia, so if you could offer the family a note of support at this frightening time, I’m sure it would be greatly appreciated.
Marcus ---Marcus was originally diagnosed on April 4, 2003 and had a bone marrow transplant in August. Marcus relapsed in November at almost 100 days post transplant. Sadly, Marcus contracted chicken pox during this time and was unable to fight off the infection, earning his angel wings on January 14, 2004.
Kevin --Kevin was first diagnosed on February 10, 1998, less than two years after his big brother Brian’s ALL diagnosis. After two and a half years of chemotherapy and over three years off-treatment, Kevin relapsed on October 30, 2003. (Kevin actually relapsed the first day I joined my online support group. I clearly remember logging onto my new list-serve and reading how devastated everyone was, with me still not understanding exactly what was going on.)
Spencer Rocket --Spencer was diagnosed with ALL on Kendrie’s birthday, September 2, 2003. He relapsed just this past week, and his parents are hard at work, investigating their options and gathering information to make their decision about bone marrow transplants vs. cord blood transplants and which will give Spencer the best chance to beat leukemia once and for all.
Please take a minute to stop by all of these sites and wish them well.
I mention these children and their stories to you so you can get a better understanding of life as a cancer parent and how the worry changes from “normal” to “beyond abnormal.” Sometimes I wonder if I will ever be able to relax again. I’m not a worrier by nature and I hate this dark cloud that has descended over me. Most of the time I am able to push it to the back recesses of my mind (or what’s left of my mind) and focus on being cheerful, optimistic and even (dare I say?) poking fun at this whole cancer ordeal. But a cancer parent never completely escapes it. Kendrie has cried the last two days that her legs hurt, which was her primary complaint at the time of diagnosis. She climbed into bed with us last night and whimpered throughout most of the night despite the pain medication we gave her. What are the side effects of the chemo drugs she is on right now? Bone and joint pain. I lay in bed last night, willing my imagination not to go the direction it was going, reminding myself that aches and pains are a normal part of chemotherapy. But does that mean I can let the worry go? I’m afraid the answer to that question is going to be NEVER.
I’ve read in books that parents can come to resent the worry, and go so far as to become angry with one another, or even the child, for “making” them worry so much. I can’t imagine doing that, so I think for now I’ll concentrate on disliking my hairdresser, since she’s the one who’s going to get rich off of cancer, as I will have to pay her so much to color my hair and hide all the gray that’s come up in the last five months. :)
Speaking of dislike, I have to say that I am really annoyed at whoever the little rodent was that invented the mydoom virus. I won’t go into great detail except to say that if you’ve sent me a private e-mail in the past few weeks and haven’t gotten an answer from me, you won’t now either because my entire hard drive was erased. Adding insult to injury, I had to PAY someone to erase the hard drive! So please forgive me while I get my system back up and running again.
On a more cheerful note, thanks to Daisy Troop 121 of Bellbrook, Ohio for the great care package they sent to Kendrie. She and her brother and sister hadn’t yet discovered pop-rocks, so that was a huge treat! And special thanks to their leader, Julie M, who not only organized the care package and cards, but was inspired to donate blood for the very first time! Way to go, Julie!
And thanks also to Brianna R of Pflugerville, TX for finishing the CB List of 100. I meant to congratulate her several entries ago, so hopefully better late than never. Thanks, Brianna, for taking the time to visit all those sites.
And thanks to all of you for letting me share my worry with you tonight. I’ll down a couple of pounds of leftover Valentines chocolate and come back more chipper next time.
WORST PART ABOUT HAVING CANCER TODAY: My legs are really achy and my hands are trembling like a little old lady's!
BEST PART ABOUT HAVING CANCER TOAY: I didn't have to have a needle stick today! (Hey, it might not sound like much to you, but after the trauma I felt having blood drawn yesterday, having today *off* was a huge plus!