Photo taken December 2005; Only FOUR days of treatment left!!! "Yeah, I'm on steroids ... you want to make something of it???"
4 Days to GO!
Yep, as luck would have it, and the way the calendar fell, of Kendrie’s last seven days on treatment, five of them are being spent on steroids. (See above photo if you don't understand what that means.) Well, hey, we’ve put up with the steroids and all the fun that they entail for two years now, might as well go out with a bang! Or a whimper. Yes, it’s definitely more of a whimper and a whine. LOTS of whining. Whining and crying. At least she’s consistent.
So, four days to go, and I thought I would share with you the Four Most Clueless Things Said to Me While Kendrie Was On Treatment. I’ve heard about some of the doozies said to other parents and feel fortunate that we seem to have escaped relatively unscathed. That, or I’m just so dense I don’t even know when I’ve been insulted. That is entirely possible. Ironically, one comment was made at the beginning of treatment, one in the middle, and the last two have been made in the last two days. We’ve got four days to go (have I mentioned we’ve only got four days to go?) so maybe someone will zing me yet!
Clueless Comment #1: The day after Kendrie was diagnosed, I walked my other kids into their classrooms to explain, briefly, to their teachers what was going on … that I would be out of town, that their grandma was flying in to take care of them in case the teacher needed anything, please understand our house is in turmoil and try to be sensitive to my older two children, etc. We had just received the leukemia diagnosis the day before and I was a wreck. Truly, a wreck. It was difficult for me to even say the words out loud without crying ….. and when I said to one of the teachers, “I need to let you know, my youngest daughter was diagnosed with leukemia yesterday” and took a breath to try and calm myself, the teacher grabbed my hand, gasped, and said out loud -- in front of Brayden -- “Oh, no, don’t say leukemia. My best friend’s son DIED from leukemia!”
Clueless Comment #2: “Are you having that baby so your sick son over there can have a transplant?” Said to me, by the cashier at Food Lion, this past summer after Kendrie’s hair fell out again. I was offended on so many levels I didn’t even know what to say. First of all, I was fat, not pregnant. My “sick son” is actually a girl, and how dare a total stranger presume she need a transplant and ask such a personal, potentially-upsetting, question??? (Although I do give her kudos for having even a basic knowledge of the transplant process.) I stood there, stunned, then simply replied, “No, that’s not why I’m having this baby”, paid for my groceries, and left, taking my “sick son” with me.
Clueless Comment #3: Said to me yesterday, by Kellen’s coach, when I told him Kellen would be missing the first basketball scrimmage of the season next Sunday afternoon because that is when we are having Kendrie’s off-treatment party. I explained, briefly, that friends and family are coming in from all over and the party has been in the works for months … sorry for the inconvenience, but Kellen will miss the scrimmage. The coach congratulated me (on Kendrie’s behalf) and said he completely understood. Then he said, “But do me a favor and ask Kellen if he’d rather go to the party or the scrimmage. If he wants to come to the scrimmage, I’ll make sure the Team Mom can pick him up and bring him home so he doesn’t have to miss it.” Now, I *think* the guy thought he was being helpful, which is why I classified the comment as “clueless” and not ignorant. But missing the party for the scrimmage? Not an option.
Clueless Comment #4: Said to me this morning, by KELLEN, while he and Kendrie and I were flipping through the Music Choice channels on the TV. (Don’t ask me. Some kids want to watch cartoons, my son wants to listen to Bluegrass.) As we hit each channel/station, Kellen would name off the kind of music (Classic Rock, Contemporary Country, Smooth R&B, etc.) and I would give a little commentary, then we would all give a thumbs up or thumbs down on the song. We got to the channel entitled “Retro-Active Rock” and Kellen asked, “What is retro-active?” I explained, “Well, retro-active means to go back and do something … something that happened in the past. Like, this music goes back and was the music I listened to when I was in school.” Kellen smiled and said, “Wow, it must go Waaaaaaaaayyyyyyyy back!”
OK, so maybe that has nothing to do with cancer, but there’s no better way to start your day than for your son to tell you you’re old. Its even worse when you know he’s right.
So, in case you are the friend or family member of someone recently diagnosed with cancer, and you’re wondering just what exactly is the *right* thing to say …. Here is the Top Four List of the Most Helpful Things People Have Said to Us:
1. “Hi. I just wanted to call and let you know we are thinking of you. How are things going?” (said in a sincere, concerned voice, and not as an opening to tell me about your crummy week instead. Then, if the person feels like giving details, listen. If the person doesn’t feel like talking about it, don’t take it personally.)
2. “I am bringing over dinner one night this week. What night do you need it?” (Most helpful the first few weeks after diagnosis. Don’t ask if you can bring dinner, or offer to bring dinner. Most people feel awkward accepting help. TELL them you are bringing dinner and ask when. They might protest, but believe me, in the beginning, they will appreciate it more than you know.)
3. “Hey, I checked your Caringbridge site and I’m glad/worried to hear things are going well/rough. I’ll keep checking the site for updates; thanks for keeping us posted like that.” (OK, so maybe I’m the only one who got a kick out of knowing people were going to the site …. It’s even better to let people know you visited the site by signing the guestbook.)
4. “Let’s go out. If you want to talk about cancer all night long, that is fine. I promise I’ll put on sunglasses if my eyes start to glaze over and roll back in my head, and you can just keep on talking. But, if you don’t want to talk about it at all, that’s fine too. Just let me know.”
And in case you are sick of reading MY lists and opinions of things to say/not to say, I’d like to share with you an e-mail that was sent to me this past week by an online friend who is a pediatric oncology nurse in Washington. Mindi, thank you so much for sharing a perspective that only someone who has worked in the field like you can possibly know and understand; I appreciate it!
“Thought I would pass on a little bit more perspective and in the end I think I may only be serving to date myself : ) When I started this kids cancer gig some 16 years ago there was:
* There was no Zofran, Kytril, or Anzamet. We told parents "Our goal is for them to sleep through this part of treatment" We had no choice
* There was no Emla and there was no anesthesia for spinal taps of bone marrows, NG tube insertions, foley catheters or most moderately invasive procedures. We held each and every screaming, terrified kid down. I still HATE myself for that!
* There was no Neupogen and most kids died as a result of Neutropenia. "Most" would equal more than 70 percent..... Treatment killed more than 70 percent of kids.
* There were no child life specialists...nurses did everything (still do for the most part) and while we were good at it, we were not that good.
* There was really no outpatient. All procedures, transfusions, and IV chemo required a minimum 7-10 day hospitalization. If your ANC was less than 1000, whether or not there was fever, you were admitted.
* For patients undergoing stem cell transplant (by the way it was called Bone Marrow Transplant, we didn't know how to apherese humans yet) the average length of stay post transplant was 47 days. Today it is 12.
* We did not allow kids with ANC's <500 who may or may not have been on steroids to eat any fresh fruits or veggies, no fast food, no Happy Meals, no Pizza Hut, Domino's, nothing that sounded or tasted good.
* We were so worried about mouth sores that as nurses we were instructed by older MD's (peds MD's mind you) that thumb sucking had to be stopped. Okay the Catholic in me requires I confess...I thought that was bullshit and cheated on a regular basis.
"Kristie my dear sweet and loving mom, we had no clue what the hell we were doing. But we learned. And hundreds of kids, and even more, their parents allowed and encouraged us to learn. I'd like to think their spirits live on in Kendrie and Mary Grace and Jack and precious Catie who is fighting like hell. We have come so far. We will come farther. We are so close.”
So there you go. Four things *not* to say (Kids, do NOT tell your mom she is old!) four things that are helpful to say, and one truly unique perspective. I’m hopeful I can continue with our Top Three, Two, and One Lists, but Steroid-Girl might not give me any more photos. Hmmm, wonder if I can train the dog to hold up one paw?
Hope your weekend was wonderful,
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