When you go through the McDonald's drive through at the end of a busy day and you pay for your food - you are presented with signs on the window asking for your donation for the Ronald McDonald house. When you go to Wendy's you are asked if you want to donate a dollar and get a key tag to redeem a JR Frosty at any time. When you watch TV on any given day, there are commercial after commercial about chemo therapy, cancer, St. Judes and the list goes on. The pictures and videos always depict a happy smiling child either holding pom poms or walking down a hallway, or sitting in a beautiful outfit with a headband or hat on.
When we were living at Childrens National Hospital, day after day, night after night for three short yet long months, we were always surprised that it was nothing...and I mean NOTHING like those commercials. The kids on hemonc were too sick to be playing in the hallways. They were too sick to be running around shaking pom poms. Most kids didn't wear their regular clothes or jammies...they just felt too sick.
When I go through the Wendy's drive through and am asked for the millionth time if I want to purchase a key tag - I just want to cry. I want to scream and show that I am a cancer mom and those key tags didn't help my baby survive. I can't buy her one of her favorite treats from wendys or McDonalds. I can't buy her a strawberry milkshake with extra cherries and watch her get whipped cream all over her face trying to dig the cherries out. I can't watch her excitement when I pull up to Wendys and order her one of those chocolate JR. frosty's. I realize that I get a little mad and I think to myself that cancer is not all the pretty, happy, cute and chubby faced kids that the commercials show. Yes, the steroids and chemo more often than not do make kids gain weight - not Bryanna. Yes, there are hopefully good days where kids will want to and be able to play with their toys, their pom poms and their friends, and yes there are times when hopefully those kids will be able to run down the hall and laugh and shriek with excitement that they made it down the hall so fast. But that was not the picture we saw. Not with Bryanna and not with the kids on hemonc at Childrens. I understand that in order to raise money for the critical research required to save the lives of these very children, organizations have to show a pretty face - they have to show what the average people want to see. That's what I understood cancer to be before it gave us a brutal wake up call. That's what seemed normal. Please don't get me wrong - I have the utmost respect for all of these organizations, researchers, doctors, marketers...everyone. They are saving lives. But it doesn't make it easier.
I remember one morning during rounds when all the doctors were talking with me about Bryanna's progress, her treatment and how difficult it was. I remember that a little boy much younger than Bryanna, maybe somewhere between 3 and 5 years old was walking in front of his parents crying so hard. They had to walk through our group that was standing outside our door to get down the hall to his new room that he was checking into. His mom and dad were walking behind carrying his bags looking equally as sad, though trying not to show it. I cried for him. I cried knowing that this little guy is going to have to endure more sickness and pain just so that he can get healthy. I cried for him knowing that checking in meant the loss of his freedom, it meant fear, it meant anxiety, it means being away from home and it meant cancer. As this little guy was coming down the hall and through our group, everyone there knew him. Every Single practitioner that was there knew him. They all tried giving him high fives and gave him words of encouragement. I don't think he heard any of it.
I saw that sadness, that fear, that anxiety in Bryanna. I saw it in her every single day. I heard it in the words she shared with me at night when no one was in the room - in the few moments that she had to herself. Cancer takes people to a very dark place - it can easily suck the light out of a person's soul. Surprisingly, Bryanna didn't let it - I don't know if it was because we tried to be up beat and encouraging, maybe it was because she was never alone. But whatever the reason, she fought her hardest and she gave it her all. Yes, she no longer named any of her stuffed animals once admitted - This is a monumental change for her as she named every little spec of a friend that she had up until this point. Yes, she stopped writing in her journal and stopped writing poems. But she still painted. She still painted hearts and animals. She still found a way through all the pain and suffering, all the fear and anxiety to find love of which she showed in her art work.
We found a poem after she passed away, on her bed and under her stuffed animals. We don't know how it got there because she would have wrote it before she was admitted to Childrens hospital. But this poem talked about a soul looking down on her and how scary yet beautiful it was. She ended it by saying good by world, good by soul. Bryanna was not a depressed child but she was sick for months before being diagnosed. She knew she was sick and I knew she was sick. I just didn't know how sick - no matter how many doctor appointments we went to, leukemia never presented. It always bothered me and I'm sure our doctors, who were and still are ever so gracious and inviting to us to bring any of our kids in for assessment anytime. Our team, both before she was admitted to Childrens, at Holy Cross and at our Pediatrician's office all did everything they could for her. We will always wonder if it had been detected sooner would she still be alive - but we never doubt any of her doctors. They did every test possible up front but the leukemia outsmarted everyone - it hid until the very last minute.
But beyond medicine, I believe that her poem told us everything we now know - Bryanna knew her time was coming. Bryanna told me as such during many of those nights at the hospital. She knew she was going to die. It breaks my heart that she felt that way before though.
It would be so easy to stuff all of Bryanna's stuff into my walk in closet and lock the door. But we found that doesn't work - it doesn't make it easier on anyone. Bryanna would have hated that. So, the other day we went through the majority of Bryanna's items from the hospital. We got pink bins to store them in. Pink - that was her color. This weekend we rearranged Bryanna and Evey's room to make it Evey's room. Evey thought for sure that she would feel so much better and not miss Bryanna that way. We knew that it would be just as hard because now there is an emptiness of a bed gone. Evey decided that she wanted to keep Bryanna's bed as hers so we are likely going to donate Evey's bed to a family that needs a nice bed. We changed the entire look of the room to hopefully take some of the void away. We put a reading nook where Bryanna's bed was. We kept her light and bed stand as part of the reading nook so they can feel a part of her while Evey and Liam snuggle their bean bag chairs and read or chat. It is an adorable room. It is a room with such a void that no matter how many times we rearrange it, it doesn't feel right. Evey was excited to sleep in her room last night. She came into our bed in the middle of the night scared that she was by herself. She started in her room tonight and before she even fell asleep came into my bed. We struggle to find the balance of moving on and trying to fill the void. I feel like Bryanna is right here with me sometimes and other times emptiness.
I don't know how we are going to get through this. Counseling and love are great - but they only do so much. Trying to explain to the kids what "she is in our hearts" means when that is not physically possible (my kids...especially Evey is very literal) and reminding them that she is our guardian angel in heaven, but having to explain the physical location of heaven not being on earth and yet not in space - how does something like this happen? How did we become a cancer family and then one day we are just a family...broken and trying to pick up the pieces?
As hard as it is to go through the McDonalds drive through and see the donation box for the Ronald McDonald house - they were a god send for us. They gave us hugs and snacks and coffee..washer and dryer at no cost...goodies for Bryanna and a safe space for her to draw on a chalk board (even though they had to rearrange the room so her wheelchair could fit in..) and a reprieve. They never thought twice. They just were there for us. Thanks to the donations...they were there for us and many other families. As much as it makes me want to scream and cry when they ask me if I want to by a key tag at Wendy's for donation to St. Judes, St. Judes was instrumental in assisting in getting Bryanna on the most appropriate protocol for treatment...only after they gave a final diagnosis of ETP-ALL. St. Judes, largely thanks to the donations from all the generous people one way or another, identified this mutated gene that causes ETP-ALL and is one of the few places continuing research to save the lives of other kids who are diagnosed with ETP-ALL. I have only read one story of a little guy surviving this deadly disease - but he did. So, as much as I want to scream and cry and hate all the commercials - they are saving kids lives. They did everything they could to save Bryanna's Life. For that, I am eternally grateful. They certainly don't show the ugly, but perhaps that is how they get so much support - they show what we the people want to see - they show hope.
I support hope - I support love - I support strength - I support every single person trying to battle the hardest battle of their lives, be it as a patient or as a caregiver by their child's side. I stand with you and I stand by you. I understand. I offer no judgment, just an endless supply of hugs, love and understanding.
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