This is the first blog I wrote about my 3.5 year old McKenna’s leukemia diagnosis for the amazing blog hosted by the York Dispatch “Tales from the Crib”
While waiting on tests and blood work, McKenna and I played around on the wheeled stool, spinning her around and going for rides. The surgeon told us he suspected mono was the culprit. I steeled myself for a long recovery period and began to wonder how I was going to discourage McKenna from sharing food with her brother, and we went home and waited for test results.
It was about 9 p.m. when the hospital called with the comforting message, “Get McKenna to the emergency room immediately. Her blood counts are so low that she could bleed out.” My husand, James, and I were actually on a rarely planned night out, so fortunately as we raced home, our best friends came with us and immediately took charge of Caleb and our dogs as we went to the hospital with McKenna.
The pediatric oncologist was there waiting for us as we were assigned a room and actually said, “You should sit down.” Somehow I didn’t think anyone was ever going to say that to me. Somehow I thought I wasn’t really going to have to worry about the physical safety of my children until they were teenagers and that the worst thing I was ever going to have to go through with them would involve bail.
In my worrywart brain I had been obsessing about the possibility of McKenna having cancer since it had been mentioned as a remote possibility earlier that day. I, and everyone else in our family, wrote it off as an irrational fear. Now here I am, and this very nice, clearly very uncomfortable fellow is telling me that my daughter has only leukemia cells in her bone marrow, almost no normal healthy cells, is so anemic that she could bleed to death and so sick that a cold could kill her. But here she is, complaining that Disney Jr isn’t playing “Sofia the First” at 11 p.m.
When I started writing this in my head, pretty much over the next few days, it read like a diatribe of things that annoyed me. I still don’t feel like I have any right to tell anyone how to behave around cancer because I’ve only lived with it for two months. But because I love to teach, it’s just how my brain formats.
So here is my completely self-serving and personal take on what to do and what not to do when someone you know has cancer or has a child with cancer. I am lucky to have the most amazing and supportive friends in the world who have stepped up and gotten me out of the house, visited in the hospital, organized meals and sent package upon package of gifts to keep McKenna’s spirits up. They have been amazing and I can’t ever thank them enough, which annoys the crap out of me. There just isn’t a fruit basket big enough! SO here are a few things that they have done to keep me sane and I hope this will be helpful to you.
- I crave normalcy. It is exhausting being a parent, let alone being a parent to a child with cancer. My whole world didn’t just get turned upside down, someone put it in a f%*ing blender and set it to liquefy. Nothing is normal: I now wait four hours for blood draws, I change dressings and fight over medicines. I sanitize everything all day long which is sooo not me. Any normal you can bring me is so deeply appreciated. By all means, tell me about your day, that funny thing that happened at work. Call me on my sh*t! I already feel like I am the neediest person on the planet. Let me do something for you if I can, even if that is to just agree with you that your co-worker was totally out of line.
- I can’t say “cancer.” I’m getting better at it. I can now say it like some people say “hurricane,” like this all-powerful being that hovers around poised to strike, but that took me weeks. Names have power and giving McKenna’s illness a name admits she has one, and I’m still not really ready for that. I am so deeply thankful that I had people who were willing to say it for me by calling friends, family, work and telling them what was going on so I didn’t have to.
- I’m terrified of the long haul. This isn’t going to get better for a really really really long time. McKenna is doing OK, being 3 years old has its advantages. She is fully aware she is sick. But she fully accepts that this is temporary and, in the meantime, she is enjoying the presents and having mommy and daddy around and overall has been handling the medicine well and has been feeling better. I, on the other hand, am only now starting to wear out, to process, to feel needy. I hate being needy. I don’t mind at all being needy on behalf of McKenna, but I’m meeting most of those needs and she isn’t really OK with having someone else do it for her just yet. So that means I’m the needy one. I need exercise, to get out of the house, to stretch (those hospital chairs are horrible), to be alone, to be a mess, to laugh. It’s going to be a very long time before I’m going to stop needing those things and, in the meantime, I’m afraid that I’m going to alienate my friends, that they will keep in touch only because they feel guilty and that all my friendships will become totally one sided. So please, seriously, help me keep our friendship as normal as possible! Take a cancer break if you need one. Don’t invite me to something if it’s going to be hard, and recognize that this is tough on you too, but that I need you to take care of yourself and our friendship because I just can’t.
- Half the people I’m with expect me to cry and the other half are afraid I will. I have no idea how I’m going to feel from one moment to the next, and week to week has been pretty out there too. This isn’t a roller coaster; it’s more like being spat out of a volcano, landing in quicksand which dumps into a sewer. I can pick up on your expectations and fears, so please try not to let them show too much if you can. The safest course is to ask how McKenna is doing, let me get it off my chest and out of the way so we both don’t have it hanging over the rest of the conversation. If I have something to share. that gives me an opening. But hopefully all is well and we can move past it to the feeling-normal-again part!
- Do not say, “Let me know if I can do anything” if you don’t really mean it!Seriously, think this one through because it is MUCH more than a social convention. Ours is not a culture which admits its interdependency. Women in America are brought up to believe we can do it all by ourselves and that we cannot and should not rely on others. If I squelch that terror of neediness and actually ask you for help, please – if you possibly can – do as I ask. Of course you don’t need to move mountains or change your whole life to accommodate me. But if you can, help. Or, if you can’t, at least try or work with me to find a way to get the need met. I’m very sad to say I have been deeply humiliated over the last few weeks asking someone who told me, “Let me know if there is anything I can do,” only to be immediately, unceremoniously and, without any pretext of thought, denied, brushed off, and not allowed to inconvenience them. Which would not at all have been a problem if they had not EXPRESSLY OFFERED. Caring for McKenna comes with a huge financial, emotional, and physical toll. What I need right now are coverage for commitments I can no longer attend, childcare, time to myself and accommodation on financial arrangements. I’m not exactly sure what these people thought “anything they could do” looked like, but I have enough platitudes.
- McKenna is 3 years old, but she can still hear you. Please keep all cancer horror stories to yourself! Not only do I not want to give my kid nightmares, but my stress bucket is full!
- Remember the grandparents! McKenna has some amazing grandparents and they are under as much stress as James and I. Maybe even more because he and I are only worried about McKenna; our parents are worried about McKenna and about us.
- Please keep McKenna in your prayers. I can’t tell you how much it means to me that you would admit my family into your spiritual life. It is so special and always touching to hear that someone has been praying for us. However, please avoid telling me that “God has a plan.” It just makes me feel like I should immediately retire to a sweat lodge, shave my head and take another husband. Like if I had been practicing the right religion or doing it hard enough, I could have somehow prevented this. It’s absurd and I know that those who say this just want to help me accept that I can’t control the bad things that happen in life, but that just isn’t how I process that phrase. You would think it could go without saying that expressions, such as “I hate it when God takes his wrath out on little children,” would never be uttered, but it was. And given that it was actually said in the midst of a sales pitch, I’m pretty sure it is being retired.
- “I don’t know how you do it.” I used to hear that a lot about being a working mom. Now I hear it even more. All moms are amazing. Just getting through pregnancy is amazing. As I walked around the hospital, I saw teeny tiny babies born weeks and weeks early, toddlers with brain surgery scars, parents who had to set timers and cheerlead their sick kids through every painful bite of a meal. I don’t know how they do it, but I do know that if I had to I would figure it out. And so would you. The best I can hope is that none of us will ever have to find out. But in the meantime, if I can hang out with an older child so that mom can spend a few extra minutes with the incubator, if I can make that toddler laugh, if I can clean up the vomit and help that mom who clearly is about to lose it as she resets that timer and starts cheerleading all over again, I’ll do it. Thanks to all of you who came by and brought a treat for McKenna and coffee for me, who cheered me up with a funny story, who cooked and served spaghetti, brought over dinner, sent a “how you holding up” text, and walked and walked and walked with me while I totally lost my mind. I’m going to keep doing it too.