I see posts from cancer parents talking about how their kid handled their appointments with grace, and how kind and thoughtful they are, and how they are always thinking of others. My kid does handle her appointments well. She hates getting blood draws, but pushes through it anyway. She is bored by all the medical talk, but is generally polite to all the doctors and nurses.
Real talk though? She's an asshole sometimes. She rolls her eyes and is sarcastic and rude to family members. She is self-centered and critical. She gets overwhelmed and angry.
I can't fault her for having negative reactions to things. We all get to have those. I just find it difficult to meld who I remember her being as a younger kid with who she is becoming now. I was telling my husband that we knew who the 6-7-8 year old versions of her were. Now we have to meet and learn this new version of her. One day we had a kid who was excited about everything and wanted to hang out with us all the time to now having someone who is unhappy doing anything she doesn't want to do and who will roll her eyes at everything we say.
I can remember my parents telling me to stop rolling my eyes and talking back. Now I get to experience it from their perspective. Parenting toddlers is physically exhausting. Parenting adolescents is emotionally exhausting, not to mention a kid who, on top of being a tween, is on all kinds of serious medications and facing a terminal illness.
And I feel guilty for having these negative thoughts. If this is our last Thanksgiving or Christmas together, will it be spent with everyone annoyed at each other? I made us get family pictures taken this weekend (because, again, what if we don't have many opportunities for more), and when I look at them, am I going to remember that I cried in the car on the way there or that my kids kept complaining about walking too much and wanting to go to the playground instead?
I felt pretty shitty afterwards, and I didn't want to look at the pictures for a while. (They ended up fine by the way, my own body image issues aside). I decided I didn't want to stay upset, so I made everyone have a family meeting to talk about attitudes and being considerate of each other. Then last night I made us watch Inside Out 2 so I could use it as an instruction manual for preteen brains and emotions. Honestly, it was great and my own preteen LOVED it.
It's weird - the things we have control over in this process and the things we don't. We did not choose our doctors. In the hospital, doctors just appeared. A neurosurgeon, a neuropsychologist, an oncologist, and countless others just appeared in the room and gave us information. We kept seeing the oncologist after everything, and luckily it has worked out. But, we did not make a conscious choice or do any research about the doctor.
The radiation oncologist was also just assigned to us. I'm sure there is a process behind the scenes, but we are just told who to go to and so we go. We only met him maybe twice the entire 6 weeks in treatment.
We don't choose when we have appointments. They just appear on My Chart. If we have a conflict, I will try to get them changed, otherwise we just rearrange our days to figure it out. A lot of the time, I don't totally know what the appointments are for. Sometimes they do labs, sometimes they don't. Sometimes we see nurses, social workers, child life specialists, and sometimes we don't. People just appear, ask the same questions, and we talk to them. I do like reading all the notes in the chart afterwards. It makes me feel like I'm a good parent. I get her to her appointments. We make small talk. My daughter is normal and well adjusted.
Right after we got the diagnosis, I saw on a My Chart note that we were assigned a Patient Navigation Acuity Level 4 for treatment. I'm not sure what that means exactly, but it felt like everyone was constantly checking on us, so it must be for serious cases. I think we've been bumped down since then because clinic appointments are not as intense, and people aren't constantly asking me how I am handling everything. I like that the office is so organized and coordinated, but it does feel like being on a patient conveyor belt sometimes.
However, we do get to decide on the treatment plan. We can refuse or seek out different treatment options and are the ultimate deciders, as we should be obviously. But it's also weird because what the fuck do we know about cancer and cells and medicine? I don't know if we should take X medicine or Y medicine. I don't even know what all the options are to ask good questions a lot of the time.
Some parents give their kids supplements and various therapies that are outside of the the "traditional" treatment plan. I know this is a way to enact some control over something that feels so out of control, trying out any possible solution in the absence of effective treatments. But then, if there is any success, it becomes selling that plan as a solution to others. As humans, we love anecdotal data - we make sense of things through stories. So, one person's success with alternative treatments is super persuasive. One story isn't a cure though. Wading into those kinds of treatments feels overwhelming to me because what the fuck do I know about how the body works or how cancer works or how all these different chemicals interact with each other? I want someone with years of medical training and experience treating this specific disease to tell me what to do. But, I guess no one really has the right answer and it is up to me and her dad to decide what is best for her whole self. That's a lot of pressure.
One of the drugs she is on, Mekenist, is having some side-effects. Nothing major at this point, but she has had an upset stomach occasionally and has some skin rashes popping up. The clinical notes call it "skin toxicity." So, I spent $100 on fancy lotions and shampoo to help in addition to the hydrocortisone and a topical steroid cream she was prescribed. I found these recommendations on another Facebook group specifically for caregivers and people on these drugs. The point of the group is to talk about managing side effects. It's weird the groups that spring up to help regular people understand and deal with medical treatments. There is definitely a gap between what doctors tell us could happen and knowing what we should do about it when it does. Doctors want to know about all the vitamins my daughter is taking and don't want her on a lot of supplements. But, can I give her probiotics for the stomach issues? I don't know. Do we just give Imodium regularly or should we wait until there's a problem? How much googling is too much googling? How do I learn to trust myself through this?
A song to scream in the car with your kid after a day spent dealing with their eyerolling
I wasn't sure I wanted to have two kids. I sometimes think of the summer of 2016 after #1 was born as the long dark summer. I had a newborn who didn't sleep very well. Breast feeding was hard, but I convinced myself that formula was not an option. I was stuck inside watching TV. I did not have the capacity to read a book. I looked at my phone so much that I developed pain in my hand and had to get a wrist splint specifically for cell phone hand. I wanted a kid, but I was not prepared for a baby.
I loved her so much, but it was also exhausting and monotonous. I kept wishing time away - I can't wait until she can start daycare, I can't wait until she can eat solids, I can't wait until she can walk, I can't wait until she can use the bathroom herself. It felt like time was dripping by. I think probably a lot of new parents feel that way. You have no idea what you are doing. You are anxious and tired, and mourn the way that life used to be. I didn't learn about matrescence until this past year, but I wish I had known what it was sooner. It would have probably really helped.
Now, for various reasons, many of my friends only have one kid. I also thought I'd be ok if I only had one. Then after 3.5 years, I wasn't. The feeling that I needed another just happened out of nowhere. I'm going to partially blame the song "My Only Child" by the Highwomen for making me cry every time I heard it and convincing me that I didn't want just one kid.
I found out I was pregnant at the end of February 2020, and then 2 weeks later, everything shut down. I remember reading about pregnant women dying from COVID or women having babies and then dying from COVID days later without ever having held their children. I read about a local family with four young kids and both parents died from COVID. It was a horror show daily. So, we quarantined a lot. I threw up every day for two months. In July, we rented a peaceful lake house 20 minutes down the road just to get out of our house. I went to doctor's appointments alone. And no one came to see us in the hospital when #2 was born.
A friend recently wrote of her own COVID baby: "She arrived during a pandemic and has continued to bring sunshine and laughter to the heaviest of times."
And, honestly, same.
I loved being home on maternity leave with my 4-family (as #2 says). It was fall and the weather was perfect. We went for walks and to the park. We napped every day. I wasn't stressed, and I dreaded going back to work. Because I was able to work from home the following winter and because COVID was still a thing, we didn't send #2 to daycare until she was 8 months old, and I still cried the first day after I dropped her off.
#2 turned 5 on Saturday. She is in many ways the opposite of her big sister. My oldest is a typical oldest child. She is a rule follower and a perfectionist. When she was 4, she didn't want to practice writing because she was so scared she would make a mistake. She would have accidents in bed or on her cot at nap time because she was afraid she'd get in trouble if she got up. She loves to read nonfiction science books, memorizing all the weird animal facts and quizzing us about them. She likes to make friends and perform for people. In preschool, she had to give everyone a hug before we could leave. She doesn't like to be sweaty or dirty or uncomfortable in any way. She loves going on adventures to new places.
In contrast, #2 was an easy baby. She slept well for starters. She wasn't particular about taking a bottle. Listening to music would calm her down. She didn't mind being in her car seat. At 5, she is silly and head strong. She will share all of her candy with you, but if you do the "count-to-five and then you are in trouble" thing, she will sit and watch you count to five, never doing the thing. She told me to throw away all her toys because she was done with them and does not care. She loves dress up and princesses, but will also jump in puddles and roll around in the sand. She usually wants to stay home and do puzzles. If you ask for a hug, there's a big chance you won't get one.
Despite these things and despite their 4.5 year age difference, #1 and #2 love each other a lot. Without even trying, #2 brings light and laughter and play with her. She, more than anyone probably, has helped #1 recover mentally and emotionally from treatment. She wants to play card games and make believe, do puzzles, and read picture books - and who is her bff to do it with? Older sister. While #2 can be temperamental and stubborn, she is decidedly not boring. She also isn't filled with worry about treatments or the future. She is just herself, and our house would be a lot different without her here.
