I had guessed how bad it would be when I heard my 19 month old had cancer. I imagined a million different scenarios in my head: some of which would happen while others did not. The Internet has been circulating “10 things you didn’t know about this” or “The top 15 reasons you blah blah blah.” So, here’s my version. But this one isn’t funny or cute. It won’t hit everyone that reads it with a familiar nod as if to say “OMG! Yes! I do that too!” This list is somber and sobering. It will be understood entirely by only those who have been down this road. Regardless, I think you should all know. Because I never thought pediatric cancer could effect my family, my precious children. No one does. Until it does. So here goes:
1. At some point or another, you will assume your child is going to die. Whether it’s only that initial second you hear a doctor say “cancer” in relation to your child or throughout the tumultuous course of treatment, it will happen. Maybe once. Maybe a hundred times. This thought will break your heart in a way that will never truly be fixed.
2. As confusing as all the words and phrases that the doctors and nurses are using on your first trip into clinic, you will learn it all. I was so upset sitting in clinic that first visit. “I’m going to fail her. This all sounds like Japanese to me.” Within weeks, not only did I understand it all, but I could shoot off numbers from her last CBC from the top of my head with the knowledge of what it all meant and why. It’s daunting in the beginning, but that part gets easier.
3. Some things will get better as time progresses, but it never gets easier. For example: after Elena’s 3rd week of chemo, I knew when to expect when she would get sick and when her counts could be expected to drop. I assure you, it’s better to know when to have a puke bag ready. It’s not easier though, it never will be. Watching your child go through her…oh I don’t know, 45th port access- it’s better because she has gotten used to it. She’s not happy, mind you, but instead of having to hold her down with all of my strength, now it’s only a matter of holding her arms out of the way so she doesn’t touch the freshly cleaned and sterile skin on her chest. It’s better, but not easier knowing why she’s going through it.
4. You will be amazed and feel overwhelming joy many times throughout this journey. I know it doesn’t sound possible but it’s the absolute truth. People will rally behind your family in a way you never imagined. It will bring you to some of the best tears of your life. Your child becomes an inspiration to others and then those people become inspiring to you. Special occasions become life changing events and will restore your faith in the kindness of people.
5. People will associate hair growth and flushed cheeks with good health. This will piss you off. Elena’s hair started growing back just months after she lost it, slowly of course. It wasn’t until two days ago (9 months after it first fell out and 1 month away from being done with treatment) that it’s falling out again. The peach fuzz she has been sporting has been a signal of a miracle cure to those outside the cancer community. Hair = Health. So far from the truth. But you’ll smile and nod anyway, not wanting to be rude.
6. Even the best case scenarios and progressions suck. We have been so lucky. Elena has been so lucky. Her tumor shrunk quickly, was removed early on and her first clear scan came back before 20 weeks of chemo. But that doesn’t make it ok. It doesn’t change the pain and suffering and emotional roller coaster you’re on. I have said 100 times, if we had to go through this, Elena’s way is the way to do it, as I am all too aware of children and families that are not as fortunate. But it doesn’t mean that I am “ok” with it. I fucking hate it. Period.
7. You will be very surprised by who sticks by you. Some people will surprise you in the best way- you’ll find lifetime friends out of complete strangers. But there will be others that you assumed would be there for you and aren’t. I can’t tell you to not let this upset you. Because it upsets me and pisses me off on a daily basis. Focus on the people who are there for you.
8. Don’t be afraid to ask for help. You will be, and you won’t do it. Even when everything else is falling apart, you won’t take your neighbor up on the offer to cook your family dinner. But you should. Someone will ask you “what can I do- anything!” You will have a laundry list of things that you should be getting done and won’t say a single one of them out loud. But you should.
9. This is an emotional experience. Be prepared. From the lowest low to the highest high. You will find yourself hysterically crying, during a good time, when there is a break in chemo and her health is at its best in months. You’ll be angry and hurt, devastated and livid. You will be overwhelmed and joyous. This is literally the craziest emotional roller coaster you will ever take.
10. You will feel like you’re failing your other child(ren). Even if you aren’t. You will do your absolute best to keep them involved but sheltered from the severity of cancer. You will go above and beyond for your healthy child and still feel guilty. Because the truth is that their life changes too. They get stuck inside all winter with your sick child because your husband is at work and it’s 15 degrees outside and you just can’t risk another rotavirus without the immune system to kick it. I don’t have advice for this one- it’s devastating but I think I’m doing a good job for Annalise. I suppose time will tell.
11. The end of treatment is not the end. In the beginning I looked at our last chemo date as this magical number. This was the day our life can begin again. We’re still a month away from that and I realize now that is not the case. She needs her last scan and her port removed after. Ok- so after her port is out it’s over. Wrong. The scans continue indefinitely. You will always have to check her health. Simple growing pains of a normal child become a phone call and appointment with the oncologist. Everything centers around the possibility of cancer coming back. And…
12. No one outside the cancer community will understand. They will be supportive, of course, but unaware of the reality of so much. And that’s ok- you can’t expect understanding from everyone…but sometimes you’ll wish they did. When the celebrations start over clear scans early on and hair growth and the end of treatment in sight- you’ll be happy for these things of course, but angry that everyone jumping for joy just doesn’t get it. Find people who do- they will be your lifelines through this.
13. This will change you. Forever. You will not be the same person after diagnosis, halfway through treatment or when chemo is over. In some ways, it will be for the better and in others the changes in you really fucking suck. I can’t elaborate much on this one as everyone’s change is different and mine is still underway.
14. Your relationships with people will be affected. From your best friend to your parents and spouse. Sometimes it solidifies a relationship, strengthening your connection. Other times it completely destroys it.
15. You are strong and amazing even when you don’t think you are. This is so important. The most important on the list. When you feel like you’ll just die from the heartache and your eyes are swollen from all of the tears…you’re stronger than you think. People will idolize you for this but the truth is you don’t have a choice. “Of course you do!” I’ve heard- oh yeah? What’s that? Lock myself in a closet and wish it never happened while cancer wreaks havoc on my child’s body??? Right, didn’t think so. But choice or no choice, you are strong enough to get through it.