Thursday, May 26, 2005


202 Days to Go

melancholy: 1. a gloomy state of mind; dejection 2. thoughtfulness; pensiveness 3. a condition of depression and irritability formerly attributed to an excess of black bile 4. affected with melancholy; depressed; a melancholy mood.

“Crazy’ by Seal is the song I always put on this site when cancer is messing with my mind. Before you jump to any horrible assumptions, let me be quick to reassure you that Kendrie is fine …. Obnoxious and ornery and fabulous as always. *I*, however, am feeling a bit of melancholy. I’m pretty sure it’s not due to an excess of black bile, so I am much more quick to point the finger of blame at cancer. Specifically, leukemia. Even more specifically, Relapsed Leukemia.

I received the sad news yesterday that another little boy I know with leukemia has suffered a relapse. I say “another” because he’s not the first patient who has relapsed in the past few weeks. Sadly, he’s not the second, either. Or the even the third … he’s the fourth child I know of in the past five or six weeks. And those are only the kids I know from my online list and/or my clinic. Excuse my French, but WTF???

I understand that there isn’t anyone to BLAME …. But I need somebody with whom I can be upset!

(Step 1. Melancholy
Step 2. Anger)

And I wish I could find a way to express my deep-seated well of fear that we might be next. Shoot, that *anyone* would be next is depressing. Even more depressing is that it WILL happen, to someone. Until there is a cure, no child is “safe” or “well” or “guaranteed” a happily ever after. Sailing through treatment doesn’t count for anything, hell, **FINISHING** treatment doesn’t count for anything, just ask Clare from Maryland. Like I’ve said over and over and over …. cancer can come back anytime, in anyone. Leukemia, neuroblastoma, sarcoma, medulloblastoma, rhabdomyosarcoma.... I sometimes feel like I will never take a relaxed, deep breath again. Unless you hook me up to a nitrous oxide canister, then maybe I could just breathe deep until Kendrie is 60 years old and I no longer have to worry about a relapse for her. That might be preferable to the worry that constricts my throat and my heart sometimes until I can hardly breathe at all.

Thankfully, that fear isn't something I always carry around like the bags under my eyes. Most days we are a normal family (much like the Adams family is normal) doing normal things (which pretty much means arguing and bickering) thinking normal thoughts (like how many more days until the kids are back in school?) Most days, anyway. But it's always there in the back of my mind, a teeny-tiny niggle that I just can't get rid of, like the insufferable relative who shows up uninvited at a family reunion and as much as you try to ignore them .... there they are .... sitting in the corner ....smirking at you ... and they're just not going away.

You know the other thing that annoys me? I don’t mean to sound ungrateful and I certainly don’t want to look a gift horse in the mouth, but Caringbridge’s new policy about “No linking CB sites” anymore frustrates me to no end. These relapse families NEED support, and encouragement, and well-wishes. Sure, I can list them in this journal and leave the sites up for a few days, but once I update the journal, the links are gone. Since we can’t leave anyone’s CB address up on our site permanently, or with an easy link, it’s extremely difficult to offer the kind of virtual support that I KNOW is out there …..

I sure hope SOMEBODY at Caringbridge is listening to the frustration….. parents are saying the visits to their child’s sites are less and less; fewer guestbook entries … I’ve certainly noticed a drastic decline in the guestbook entries on Kendrie’s site that start out “I know you don’t know me, but I found your site on so-and-so’s site …..” Personally, I loved those and am sorry that doesn’t happen much anymore. Caringbridge has announced it will be unveiling some "new and improved" technology changes on June 1st .... I sure hope they address this problem and realize the vast majority of Caringbridge families do NOT like the new policy! (grumble grumble)

I DO, however, appreciate those of you who have us book-marked and continue to check in and leave us messages of support. If you’re going to leave a message today, though, please visit one of these other sites and let them know you heard about them through Kendrie’s site. I’m sure they would all be happy to hear from you. As awful as it is to be told your child has cancer, every parent I know who has gone through a relapse says it is a hundred times worse when you hear *those* words. The first time is terrifying, even with your blissful ignorance. This time, they KNOW what these precious kids are in for.

Victor from Pennsylvania, who relapsed last February, but just had his transplant two weeks ago and is thankfully doing well so far! I'm sure they are tired of being in the hospital and could use some words of encouragement. Even with Victor doing great, it's been a long road to get here and they still have a long ways to go.

Cameron from Connecticut, relapsed last year and had a bone marrow transplant with his brother Chad as donor. One year past transplant, this April, Cameron's family found out he relapsed again. Please drop Cameron some well-wishes!

Caleb from Washington, just started his re-induction this past week for his relapse that happened earlier this month, only four months away from finishing his final chemo. So, three years of chemo down the toilet .... Caleb starts over on a tougher protocol. I'm sorry, but that just sucks.

Clare from Maryland, who also relapsed earlier this month after sixteen months off-treatment. Clare had been done with her treatment for almost a year and half, and BAM, out of nowhere, the leukemia comes back. I can only imagine her family had just started relaxing ....

Jake from Georgia This is the one I'm having the most trouble swallowing today, simply because I just found out about Jake's relapse yesterday, and also because Jake is the one kid on this list that we have met personally. We've visited with his mom and dad in the clinic on occasion, and oohed and aahed over his adorable baby sister. They are reeling, and Jake is scheduled for his BMA on Friday to find out the severity of the relapse (like *any* relapse isn't severe?) But I know they are praying for no bone marrow involvement .... as we all are. If you can go to Jake's site, there is a guestbook link just like the Caringbridge sites and you can leave his family a note of support, as well.

There are so many other kids on my online list who are following relapse protocols. Fortunately, most are doing well. I have to remind myself that even with a relapse, leukemia still has a good chance of being beaten. For certain other types of pediatric cancers, a relapse is a death sentence. Leukemia is not like that .... but the path that lies ahead for these kids is not an easy one and I doubt any of the parents are sleeping too restfully these days. Please help lighten their loads by letting them know you are thinking of them.



Hello?! Did you read that note??? I am not even sure what all that means, but I know it's pretty crappy.

BEST PART ABOUT HAVING CANCER TODAY: My mom felt so sorry for the school nurse and the fifty bazillion times I went to her office this school year that we took in a bouquet of flowers for her .... I think she really liked them. That made me feel happy.

No comments: