Saturday, July 10, 2010
Friday July 9th started like any other day for us. The kids woke up, we got them their morning sippy, turned on Mikey Mouse, and snuggled with them in bed until Pats alarm went off. After we ate breakfast and got Daddy off to work Cami played with her dear friend Elle Lee, while Caden and I went to Costco. When I got home from Costco my neighbor (Colby, Elle Lee's Dad) mentioned to me that Cami wasn't acting like herself and that she just wanted to sit in a stroller in his garage the entire time I was gone. He also mentioned that he noticed her limping a little. I remembered she had been complaining of hip pains for the past week, but I watched her walk and couldn't see anything different so I figured she was just tired. I took her in and gave both the kids some lunch. After lunch I noticed she was acting mellow and almost "zoning out" at times. I had an overwhelming feeling to call her pediatrician.
I felt almost silly when the nurse asked me her symptoms, and I'm sure she rolled her eyes when I said "her hips have been hurting for a few days, and she is acting really mellow". There was only one appointment left at 4:30, and I almost didn't take it because Pat and I had plans to go out that night and I needed to be in Salt Lake by 5:30. Once again I was prompted to take her to that appointment. When we got there, our amazing pediatrician (Dr. Randy Reese) checked Cami's ears, nose and throat. He looked at her hips and asked her about the pain (they weren't hurting her at the time). He said she looked absolutely healthy. He was about to send us home, when he noticed Cami looked a little pale. He handed me a prescription to get her blood drawn. He said it was probably nothing, but he just wanted to make sure she didn't have a deeper infection we were missing. He said I wouldn't get results until Monday. When I got downstairs to the lab they were about to close down for the night, but for the second time that day we caught the last slot. They took her blood and off we went, but not before stopping for ice cream because Cami was such a trooper getting poked. Little did I know this was something we'd both get very used to in the days to come.
Around 11:30 that night I got a phone call from Dr. Randy. He said "I'm so sorry to call you so late, but I got Cam's blood work back and there were some irregularities, you need to wake Cami up and take her to Primary Children's Hospital right away, Ive talked to a Dr. there, and they are expecting you". My heart sank. I knew he would never call me that late, and make me wake her if it wasn't serious. We raced to the hospital. The rest of that 8 hour night is a blur of tests, IVs, screams, waiting, wondering, crying..no scratch that...sobbing, and then KNOWING. I cant describe what I felt the moment they told us they were sure it was cancer. I couldn't look at Cami without bursting into tears. I couldn't look at Pat without bursting into tears. I couldn't stand or even stop shaking for that matter. I just rolled into a ball on that ER bed. I couldn't focus on anything but the tiny hand I felt on my back and how that tiny hand was full of a big, ugly, scary cancer. It all seemed so unfair.
I had a million questions, I didn't want answered. How can a body so little and fragile fight off such a terrible disease? What kind was it? What stage is she in? Did I feed her something or expose her to something that caused this? How long has she been suffering through this? Why is this happening to my baby girl? How can my heart ever handle this heartache? Those questions were left unanswered until morning. They told us we would be admitted to the hospital and taken up to "a room". We followed a nurse pushing Cami's tiny body (in what seemed to be a gigantic wheelchair) through double locked, security guarded doors where they ask if you've washed your hands (twice). Once through the doors we were in a world I had only seen in movies. We were surrounded by medical supplies of every kind all mixed in with toys, kids drawings, I noticed an empty bike in the hallway, which, by the way made me break into tears again. It was almost an oxymoron: a bike in a hospital hallway, its just not right. It was a home for sick kids, kids just like my kid. A place where people understand us, and are going through the same things. A place to help make me feel comfortable. A place to make new friends. A place to talk, plan and map out a battle plan to beat this. It was a place for hope. Only, it was a place I DIDN'T want to be a part of.
The next morning we met Dr. Verma (one of Cami's Oncologists). She was direct and to the point. She gave us Cam's official diagnosis. Acute Lymphocytic Leukemia B-cell (or Pre B-cell ALL). She explained that this was the easiest type of leukemia to treat and that kids Cam's age had a 80-90% cure rate. She told us that all 3 of Cami's blood cells were way low, which means she gets infections easily, cant heal or fight off those infections easily, and has less oxygen in her blood. She explained that most parents are too overwhelmed and overloaded with information so she would just take us day by day. This was not going to work for me. I kept asking questions and she got the hint, finally she pulled out a dry erase marker and gave me a play by play of our "fight" for the next 3 years. She explained in great detail leukemia and how our bone marrow produces blood cells, she told me how to clean my house to keep germ free for Cam, she told me what she should eat, and how it should be properly cooked. She told us how important hand washing and keeping anyone sick or that even COULD be sick away from Cam. She told us we had hope and that this medicine would take a toll on her little body, but ultimately it would kill this terrible cancer in her blood. She spent a good 45 minutes "teaching" me and explaining all my questions. I cant even tell you how amazing that was for me. I realized later how valuable her time is, and how caring, compassionate, and truly amazing that was for her to spend that time breaking things down for me and even writing them on the board. We are really blessed to have such an understanding Doctor.
Doctor Verma's lesson was exactly what I needed. When I walked through the halls for the second time instead of feeling mad or sad that we were here, I saw the loving faces. I heard it when people said things like "you'll make it through this", and "good job, you caught it early". I saw the happy normal (besides being bald) kids playing, laughing, coloring, and dancing. I saw Mom's who looked like they had actually slept and showered (something I never thought I'd be able to do again). It made me feel comfortable to see others going through the same thing with their kids. I saw kids of all ages dealing with the same tubes, pokes, medicines, surgery, and pain. I saw them playing and being normal. Most important they had smiles, they were laughing. I had hope. I was ready to be there for Cami in every way possible. I was ready to buck up and beat this thing.
As I write this Cami has had surgery to put a central line in, a bone marrow biopsy, spinal tap, 2 blood transfusions, and 2 rounds of chemo (she'll get another round before we leave). She is on steroids, anti-nausea meds, pain meds, acid reflux meds, antibiotics, ani-constipation drugs, a drug that controls the acid in her liver, an IV drip, and they are taking her vitals every 1-2 hours. The sheer volume of drugs going into her little body astounds me. At one point she had 8 different wires connected to her. She has been such a trooper through this entire process. She keeps saying "sorry we have to be here Mommy". That's just our Cami, easy going and worried about others. It breaks my heart to see her going through all this pain, but she is so much stronger than I am. She is so brave. She has already seen more pain than I probably felt my entire life, yet today she was singing as she washed those tiny hands for the 1000th time. Those tiny hands that are covered in wires as she sleeps, and her tiny arms which are bruised and battered from so many needles. I am amazed at how strong she has been. Truly amazed.
Yes, we have been through a lot, but (from what I hear) this is nothing compared to what is to come. Our new life is needles, Chemo, drugs, and a grumpy little girl (the steroids she will be taking the first month cause rage, anger and weight gain). For the first month Cami will have 6 different types of Chemotherapy. We will be coming in for treatments at least once a week. She will have blood transfusions as needed and bone marrow removed twice a month (this is a painful procedure which she will be put out for) she will be taking the steroids twice a day along with the slew of other meds I mentioned (those meds are just to help with the side affects of the chemo, steroids and bone pain). Her hair will fall out, she will feel sick and weak. Then after that first month of Chemo+steroids she will be put on just intense chemo once a week for 7 months. After we have endured through those 8 months we will be in the "maintenance phase" which will be chemo once a month for 3 years. We are told this phase is easier and this is when her hair will start to grow back and she will begin to feel better. We have a long road ahead, but its one we know we can face and we are ready.
Out of all the terrible things we have been through and all the horrific things to come, we have had many amazing moments. We have seen and felt the work of our Heavenly Father first hand: my neighbor feeling the need to let me know his concerns about Cami's disposition and limping, my prompting to make (and take) that last appointment of the day (it was Friday and we would have had to wait till Monday to see her pediatrician again), the intuition Dr. Reese had to order those labs (he told us later how close he was to sending us home and that he's convinced it was divine intervention), the fact that the labs were even processed that night before they closed is a miracle in itself. We have had so many little things that have added up to one giant incredible and at the same time horrifying experience. Ill tell you, if there's one thing I have learned so far, it is to listen to that small voice inside, even if it is telling you to do something that seems silly. I am extremely grateful for those people who listened to that small voice inside and helped us get to the help that Cami's little body so desperately needed.