ONE in FIVE children who HAVE CANCER will NOT SURVIVE.
That's the potent line in a St. Judes commercial depicting children fighting the fight of their life. The parents are interviewed and are heard saying that the feeling of not knowing if your child will survive is terrible. The first child who is interviewed has leukemia. She looks very sick. She is fighting so hard to survive - I sincerely hope that she does. I can't get through these commercials without crying. They don't make me mad like the happy commercials - they make me so sad. I know, it's a not very positive or optimistic of me to critique every one of these commercials. But here's the thing- I have been on every side of that. I didn't used to be a cancer mom. I would pause and reflect on how thankful I was that my kids didn't have to face such devastation...and then I would carry on with my day 30 seconds later when the commercial ended. But I then became a cancer mom in an instant when the doctor took me into a room with two other doctors whom I never met, sat me down while holding my hand and told me "I'm so sorry to tell you, but Bryanna has cancer. She has Leukemia." I know what it feels like to be told the next day that she has AML which has a 80 percent survival rate. I remember Mike saying...but that's horrible. That means 2 out of 10 children will die. What do we have to do to make sure that's not Bryanna? Then we found out they were wrong, it was T-Cell ALL...which was even better...90% survival rate...then they realized it was so much more serious...after over a week of lab research from the brightest minds at childrens National and St. Judes they found it was ETP-ALL. This carried a 30% survival rate. That's 7 out of 10 children will not survive. That means only 3 out of 10 children will. When they do survive, they are not free of worry or illness, more often than not, they have secondary cancer caused by the treatment they were getting to battle the first cancer. Often times they cannot bear children and have many different struggles as they carry on with their daily life. If they survive.
One in Five children will not survive cancer. Bryanna was that ONE. Bryanna had less than a 30% chance of survival because she not only had one of the toughest forms of leukemia, but she had a mutated gene on top of that. One that to date does not have much research due to how rare it was. Four out of Five children WILL survive. For those kids, I am so very thankful that you have been given the strength to fight. I am so thankful that you were able to beat this awful disease and I pray that you continue to stay strong.
For the past couple of days, I have been dealing with a brutal cold....body aches, congestion, exacerbated asthma...you know...the whole gamut. Yet, all I can think about is when I felt my worst, I know that it never ever came close to what Bryanna was feeling on her good days. She fought so hard to get through each day with the most excruciating pain. Pain that opioids couldn't take away. Nothing about cancer is good. It causes so much pain and suffering to so many people. I can't wait for the day that the commercial says Five out of Five children WILL SURVIVE Cancer. I just wish Bryanna had also been one of the survivors that could share her story.
As we sit at dinner and Evey tells us some of the struggles she has had at school...I watch both Evey and Liam. I watch how they interact with each other during these difficulties and I think back to when we had similar conversations with Bryanna at the table. Evey used to listen so intently at Bryanna's struggles and then try to give her advice...and comfort. As Liam so wisely and calmly told Evey to "Calm down and take a deep breath. In through your nose and out through your mouth", as he demonstrated ever so calmly, and touched her arm to get her to calmly focus, I couldn't help be so incredibly proud of the little people my kids have developed into. As I struggle with this cold (which after everything my kids have gone through, I have no place to complain), I have lost my voice. This is surely a win for the world...and I thought for the kids. Yet, rather than taking advantage of that, they were so helpful and so concerned. Evey wanted to be my voice - she even called from the other room this morning when I was talking to Liam..."I told you not to use your voice. You have to rest it mom! Stop talking!". Then when she got home she asked if I spoke today and when I said I did a little...she told me in a very serious tone "I'm really disappointed with you. You have to take care of your voice so you can get better." Liam them follows with..."ya mom...so disappointed". The amount of heart, caring and love that these kids have to take care of me, when it's my job to take care of them, even if it is to tell me to stop yapping to protect my voice, it's just wise beyond their years and makes my heart sing (as Bryanna used to say). It touches me so deeply. How did I get so lucky to have kids that have weathered a few of the worst storms imaginable...and yet they still carry on. Today marks 2 years that we had that apartment fire. It marks two years since Levi alerted me to the fire and I had to make a split decision on how we got out of our home. It marks two years that we lost all of our furniture, our pictures, toys, clothes, underwear, shoes, kids artwork and pretty much everything. It marks two years that I lost all of Bryanna's things she had for the first 7 years of her life. All the things that I would have loved to have had to look at today. Yet here we are...focusing on the now, the tomorrow. Focusing on taking care of each other...focusing on our team...not our trauma.
I think back about the funny things of parenting - of the things you just look back and say...wait what?! It's these moments that really make me smile. Like the time when Liam was doing his thing, and Bryanna and Evey were tired and cranky after a long day at school and were fighting. I'm talking about an all out screaming, yelling, crying, not even rational type of fighting. Meanwhile, I'm trying to get dinner together while doing the dishes. A person can only take so much of that fighting before imagining locking themselves in a bathroom with a big bag of chocolate, 20 packs of oreos and gallon of milk. I'm not even talking about taking the time to bring a cup to dunk the oreos in. No, when you are at your wits ends, you just want to breathe and you will drink out of that jug of milk, after all you're taking one for the team...well, you are being one away from the team, so you tell yourself you are taking one for the team in that moment. Then you snap back to reality and you realize if you don't intervene in this escalating fight between two little girls, then world war three will break out resulting in lots more tears...and well, you already ate the chocolate and oreos so you can't offer that so you better make it right quick. So, naturally, I jump in after hearing Bryanna and Evey yell that they aren't sharing their unicorns. I like to be fair of course, so I say...at my wits end of course (mind you, liam is crashing his cars, dinner's cooking, the sink of dishes are still screaming at me and I am dreaming of a quite bathroom with my 20 packs of oreos and a gallon of milk)..."you use the unicorn first and then you share it with you sister who will use it after. If you guys have a problem with that, NO ONE WILL GET TO USE THE UNICORN!" Well, that sure got their attention. I guess it made sense, because the fighting stopped. I felt quite accomplished and got back to my dinner making and dish cleaning activities feeling like I was a master at this parenting thing. Then it hit me. This was not a toy they were talking about. This was not a stuffed animal. This was not a drawing. Bryanna and Evey were fighting over an IMAGINARY unicorn. Let that really sink in for a second. The least I could have done was given each girl their own unicorn at that point. Not sure who won, the girls or their imaginary unicorn. I was back to dreaming of my 20 packs of oreos and my gallon of milk...but the unicorn flew away with it.
I miss those silly stupid parenting moments that having three kids brought. There is a lot less chaos these days. I'm sure Evey and Liam will build up to it, and I'm sure they are waiting to unleash the mayhem...but I sure miss the girl fights. The fights about Evey not letting Bryanna sleep because she had the power to keep her awake by talking, the fights about Bryanna not letting Evey know where she kept her most important things...you know...the sisterly fights. Fights about who gets to ride the unicorns first. Instead of sisterly rivalry, Evey now gets sad when she sees the Disney junior commercials with sisters singing the "sister sister" song from Elena of Avelor. But Liam steps right up to let her know that he is 'happy to be her sister'. We will figure things out. Yes, we are the family that had that One in Five children...but we will fight our own fight to make sure we get through this, even if we have to share our one unicorn along the way and brothers have to be sisters, even for a little bit.
 |
| Bryanna, Evey and Liam always hung out together and always had each other's back. Who would have ever have thought that Bryanna would die from cancer, Evey would be sad that she "no longer has a sister here" and Liam would tell her "I'll be your sister". |
 |
| Four out of Five children have to pick up the pieces and figure out how they now fit into their new family dynamics. One of Five children don't get a say anymore. |
No comments:
Post a Comment