February 4, 2016, Sami woke up and was complaining that her side hurt. Not thinking too much about it we sprayed some BioFreeze on it and had her lay down thinking I would take her to school late. As the day progressed the pain didn’t really let up so I took her to the walk in clinic at our Doctor’s office. It was a weird pain, didn’t hurt to touch, but hurt to breathe deep or if she moved funny. She also had a small bump on the back of her neck, like the size of a pea. We explained to the Dr. the pain and he said she probably strained a muscle and suggested we just rest and take Advil. I then asked about the bump. That prompted him to think that it could be mono. So he ordered the blood work. The lady tried three times to no avail to get the blood so we left. When we got back home I called and left a message for her Dr. he didn’t call me back until the next day, the 5th. I explained her symptoms and told him that she has also been bruising more easily than normal and being the person that I am, I also explained where my head went. I actually asked him if it were crazy of me to think it could be leukemia. Like any professional Dr. he told me basically that I was over reacting and that mono was the likely culprit. We went in that afternoon for blood work.
That brings us to Monday morning February 8th. Our Dr. called me, said her blood work came back weird and that if he had to guess he would say that there was something wrong with her bone marrow. He told me he was already working on getting her to a children’s hospital to see a specialist. That brought us to children’s hospital of Los Angeles where they were waiting for us. After hours of waiting in a room in the ER, they had drawn her blood and came back. In an instant, the results changed our lives. Positive for leukemia. Her counts were very VERY low. They moved her upstairs and proceeded to give her blood and platelets.
She has what they call Pre B Acute Lymphoblastic Leukemia. Don’t ask me what that means. All I know is that there are three types of childhood leukemia and if one had to choose which one to have, one would choose Pre B ALL. Which makes us happy which is also a very confusing feeling.
They explained to us that Sam has what they are calling “treatment induced type 1 diabetes”. Most likely from the steroids and most likely will go away once the treatment is over. But for the time being, she is insulin dependent.
She still hasn’t had any side effects from the chemo (except diabetes but really….who’s counting that?!?!) and for that I remain grateful. She has lost 10 pounds since last Monday. Whomever came up with the phrase bag of bones must have had a child on chemo because she is literally a bag of bones. She is 5’1″ and only 85 pounds. I can count her ribs. I see her hips and collar bones protruding. Her knees are knobby and her arms are bruised. Her face gaunt and discolored from the disease running rampant through her body. But she’s so brave and she’s a fighter.
Everyone keeps telling me I need to be strong for her, that she needs to draw her strength from me. I think it’s the other way around. I see her bravery and I know I have no choice but to be strong.
I got a text from an old friend the other night. He said “keep your middle finger pointed squarely at all the negative things and the other arm wrapped around your baby”. I will never let go and I will never give up.
Sam is doing great considering all that she is up against. Her biggest complaint is the finger prick to test her sugar levels. She’s a fighter. She is so strong. She’s amazing.
Tomorrow Matt goes back to work and to be honest, I’m slightly terrified. He has been doing everything for both of us which isn’t fair but he’s been amazing. He keeps track of her schedule and her pills and the insulin and calculates what she needs and when. Meanwhile I’m walking around the house with a container of Clorox wipes. It hardly seems balanced but tomorrow I have to exchange my Clorox wipes for alcohol wipes and syringes.
I know I will get through because I have no choice. She has no choice.
I have yet to utter the sentence “my daughter has cancer” out loud. I don’t know if I will ever be able to say it out loud but at night, well that’s a completely different ball of wax. That sentence plays on loop in my head. I try to occupy my mind with other things but I can’t.
Today, well yesterday morning, was the first time Sam woke up crying. She was in pain from the mouth ulcers the chemo is causing and it’s the first time I looked at her and thought she looks sick. Her face swollen from the steroids, her body impossibly thin, and her once beautiful long hair, thinning. My daughter has cancer and it’s getting harder and harder to avoid that reality.
Cancer as defined by the Merriam-Webster dictionary: a serious disease caused by cells that are not normal and that can spread to one or many parts of the body.
Cancer as defined by me: the monster under my bed that keeps me awake at night. I try to sleep. I really do. I like to sleep actually and up until now it was something that I was pretty good at. Now sleep eludes me. Now it’s that scary place where everything is so quiet and I am alone with the thoughts in my head and I conjure up the things that only nightmares are made of. It’s the only place I say “my daughter has cancer” because there is nothing preventing me from doing so. During the day I manage to stay quite far out of reality because while I have to visit it, it’s not anywhere I want to live.
As I lay here exhausted I remain thankful. If I have said it once, I have said it a thousand times, our worst is someone else’s wish and I know this. I know people who would give anything to trade us places and I do not take that for granted.
I continue to thank my family and Matt’s family and my incredible network of friends. I do not say it enough but thank you for everything. Thank you for the drive by Starbucks and for the dinners, which without I would have no idea what to feed everyone. To Colby who gave me a membership to her gym so I can punch a bag, thank you. I need it and I can’t wait to use it. To Samantha’s friends who are all so wonderful and have equally wonderful parents who all check in on her daily. Thank you. To her teachers who email and make videos for her, thank you. Lauren Butler, you are an angel and selfless even though you are battling the same beast and to Tami who answers all my questions. I’m eternally grateful. I continue to be thankful for our soccer families both high school and club. We are so blessed to have all these WARRIORS on our side.
Right now I ask that when Sam wakes up in a few hours that the pain has subsided and that she slept well next to big sister Lauren (thanks for the night off!). I ask that she isn’t scared, that she continues to find funny videos online that make her laugh until she pees, and that she sends them to me so that I can laugh too. And I ask that she is healed, that this insidious monster gets the hell out of her body and lets her live a very long, happy and healthy life, the same life she was living 26 days ago. Please Lord….make it go away.
-Sherilyn Stewart (Sami’s Mom)
To donate please go to Sami’s Go Fund Me