July 4, 2013
Faith was sick in that picture, but we didn't know it. I think back a lot to what may have triggered her cancer. Was it her diet? She's not a picky eater, but like most kids she'll choose pizza over baked chicken and soda over water. Was it the plane ride to Missouri or Maine? There's a lot of radiation emitted from those planes. Maybe it was the parabens in her shampoo or the carcinogens in the plastic containers I forced her to take her lunch in. I was trying to be environmentally responsible by not using ziplocks. Whatever it was, it has to be explainable...right?!? I have a scientific mind and it's hard for me to accept that this is some random freak of nature. But, I have to accept that I will never know. I am literally making myself sick with worry over it. Last month Chandler and I got into a fight over the fact that I don't want the kids to eat Top Ramen. There are so many chemicals in that! He countered with the reminder that I let them eat candy. He was right. But where do you draw the line? I recently experienced a persistent metal taste in my mouth. I tried everything that I could think of to get it gone. I gave up coffee, wine, soda, tomatoes, and more. I changed my toothpaste and flossed more than once a day. NOTHING worked. I finally went to my dentist. I hoped it wasn't something serious and my Internet research (which is not usually a good idea) suggested it wasn't. Turns out I had something called burning mouth syndrome. My Internet research of that indicated that I was experiencing an unexplainable and untreatable syndrome generally brought on by stress. Are you kidding me?!? Wake up call...it's time to chill out. Being a physcho-lunatic-worry-wart is making ME sick. My burning mouth syndrome quickly resolved itself once I realized it was, essentially, a figment of my imagination.
It's been awhile since I've updated this blog. Time is one real issue. We have only been admitted one time since Faith's last chemo. Sitting in a hospital room while my feverish daughter sleeps the day away fighting against neutropenia (low immunity) allows for a lot of time for introspection and blog writing. That last round of poison really taxed her already fragile body. Faith got so week that she asked to have a blood transfusion and rightfully so. Her red blood cells were at near record lows and dropping. So were her platelets and her white blood cells. Her poor bones were tired. A couple of days later, she was admitted to the hospital with a fever. Her little body doesn't like to be nuetropenic and Faith was at her lowest. The world is a scary place when you have a kid with no immune system. Hope and pray is all you can do. Thankfully, her system rebounded quickly and we were released from the hospital with some great news...Faith could eat whatever she wanted from wherever she wanted and she no longer had to endure twice-daily mouth care. We went home and threw away the Biotene, the anti-fungal lozenges, the safer-to-eat but bad tasting prepackaged lunch meats and we replaced them with fresh berries, bagged salads, and deli meat (we really like Boar's head). I'm sure it seems silly, but for over 9 months she was forbidden from eating berries (her favorite fruit) due to their high affinity for mold growth, and deli meat and bagged salad for the likihood of bacteria from poor cleaning techniques. These are staples in our home! She was also forbidden from eating at restaurants where food has not been freshly prepared. No Subway, no McDonalds, no Sonic, and no bean dip at Serrano's. Imagine trying to confidently eat out with a kid who likes kid food. The first restaurant Faith chose to eat at was Subway. Turkey and Swiss on white with light mayo and lettuce...heaven and freedom all wrapped up in wax paper. Raspberries were next. No joke, that kid ate 2 containers just like that! Things were starting to look up and return to normal...whatever that is.
We had gained back a little freedom, but we were still tied to the valley, to PCH really, with the fear of fever. Faith still had her port in place and as long as that was there any fever could be from it being infected which required a possible trip to the hospital. They wouldn't schedule the removal of the port until we repeated all of Faith's scans to declare her officially cancer-free. The waiting and the worrying have made Scanxiety is a new word in our vocabulary. Chandler and I have promised each other to TRY to not live scan to scan, but to simply live. Each day we have with our children and each other is a gift and we want to treat them as such. I knew in my heart that the scans would come back good, but those damn what-ifs still lingered. The scans were clean before the surgery, the pathology report showed that the tumor was 100% dead. So, why bother with the scans at all? Her docs must know something we don't, they have doubts. Don't be silly, it's just protocol. She's fine. These are the conversations that bounce around in my head. It's exhausting! This volley is exhausting, so is the worry, the unknown, the pretending that I'm not worried at all.
So we did the scans and we waited a few days for the reports and then Chandler, Faith and I returned to the clinic to hear the results. As we were waiting Faith says she needs the restroom. Really?!? You can't wait?!? No, mom, I gotta go now. So, Chandler took Faith to the ladies room while I waited for the doc. No sooner had the bathroom door closed than the doc walks in. I told her they would be right back. We had planned to receive this info, good or bad, as a family. We should wait, but the doc just looked right at me and blurts it out..."she's fine. The scans are good. No more cancer". I practiced being a big girl before this appointment. I told myself to be strong and hold it together, but my emotions were too big, the tears were too strong to hold back. Cancer-free is now her official label. Chandler could tell when he walked in the door that they were happy tears. The nurses and doctors at the clinic wouldn't let us leave before they came in to sing us a silly bye-bye chemo, bye-bye cancer song. I was wonderful!
The port came out shortly thereafter and we were free. Free of cancer, free to go where we wanted, free to breathe deeply, or at least deeper, that this whole thing was behind us as a shadow instead of in front of us as a road block. The funny thing about shadows is that you can never quite shake them. Sometimes, in the dark, they aren't visible, but they always come back with the light. Faith's cancer will always be on our minds and a part of our lives. That makes me mad. That's the other reason I haven't written lately
So we did the scans and we waited a few days for the reports and then Chandler, Faith and I returned to the clinic to hear the results. As we were waiting Faith says she needs the restroom. Really?!? You can't wait?!? No, mom, I gotta go now. So, Chandler took Faith to the ladies room while I waited for the doc. No sooner had the bathroom door closed than the doc walks in. I told her they would be right back. We had planned to receive this info, good or bad, as a family. We should wait, but the doc just looked right at me and blurts it out..."she's fine. The scans are good. No more cancer". I practiced being a big girl before this appointment. I told myself to be strong and hold it together, but my emotions were too big, the tears were too strong to hold back. Cancer-free is now her official label. Chandler could tell when he walked in the door that they were happy tears. The nurses and doctors at the clinic wouldn't let us leave before they came in to sing us a silly bye-bye chemo, bye-bye cancer song. I was wonderful!
The port came out shortly thereafter and we were free. Free of cancer, free to go where we wanted, free to breathe deeply, or at least deeper, that this whole thing was behind us as a shadow instead of in front of us as a road block. The funny thing about shadows is that you can never quite shake them. Sometimes, in the dark, they aren't visible, but they always come back with the light. Faith's cancer will always be on our minds and a part of our lives. That makes me mad. That's the other reason I haven't written lately
Our daughter won her battle to live, to beat the C word. She won, but she lost, too. We all did. I am generally a very positive upbeat person, but the weight of it all was too heavy to maintain that glass half full attitude and every time that I tried to chronicle my feelings they just wouldn't come out right. I generally find that writing this blog helps me to sort out my feelings, but I think what I needed was time because a lot of what I was feeling was fear and anger. I was mad that my beautiful girl lost every hair on her body right down to her last eyelash. We were getting ready to go to Kady's dance recital and Faith asked if she could have some make-up, too. I went to apply the mascara only to realize that she had no eyelashes. None! Faith wasn't really bothered, but I was crushed. She'd already lost her eyebrows, not her beautiful lashes, too! I was mad that she lost 6th grade and most of her friends. I was at the school pride assembly watching Kady get an award when the 6th grade dance team came on stage in their cute little Sanborn Suns outfits and the tears welled up in my eyes. That was something Faith had always wanted to do and, DAMNIT, she should be up on that stage. That should have been HER! I silently sat next to my neighbor, tears streaming down my face, forcing myself to stay seated and not run out the door. Around the same time my neighbors were posting pictures of their kids at the 6th grade choir performance that Faith would have wanted to be in and the 6th grade parade. I am so mad that she lost the ability to walk, to ride a bike, to play outside with her friends. I'm afraid she will never fully recover, that she'll always have a pain, or limitations. I'm afraid that she'll get sick again, that one of these scans the doctor WILL wait for Chandler to return from the bathroom so that he can be there to hold me up before I fall to floor. I am mad that I lost the idyllic notion that "it won't happen to us". I am mad that we even had to go through this at all.
These are all things I am mad about, but not her, not Faith. I asked her last week if she thought last year was hard and she didn't hesitate to answer "no". I don't think she realized she missed the school stuff and I know she doesn't worry about "what-if's". Last year she got to spend one-on-one time with one of her favorite teachers. Faith has never been one to fret about what she doesn't have but rather one to relish in what she does have. Like my boss says, "what's so is what's so" and Faith is a What's So kinda girl. That makes me mad at myself. Why can't I be happy that she is going to be ok? I know of many families who are fighting very different, very uncertain battles. Battles that may take their babies from them. When I pause my pity party long enough to remember how much worse we could have had it I am very disappointed in myself. This I didn't want to share in a blog, but it's a real part of this story.
After the effects of chemo had subsided, Faith's body began recovering and growing again. Her eyelashes and eyebrows were the first to come back, followed by the rest of her hair. We kept our fingers crossed that her leg hair would stay away, but no such luck. The hair on her head had begun its return, too. It was the softest, most beautiful thing I have ever witnessed. I think it was particularly beautiful because of what it meant, but, really truly, it was the softest thing I'd ever touched. Faith has been very gracious in allowing EVERYONE a rub! Along with hair growth came bone growth. That was the golden ticket we had been waiting for. Her surgeon met with us right before Memorial Day and gave us the green light to begin PT. I don't know how we didn't plan for it, but we had no one lined up for this. We hadn't even considered the fact that to go from non-weight bearing for 9 months to walking would actually require the aid of a physical therapist. Actually, we knew it would, but it never occurred to us to get that person lined up before we needed one. So, I scrambled and thankfully found Lauren at Preferred Rehab through a friend. She is amazing and she and Faith instantly clicked. Faith had to ease into it since her muscles had atrophied and needed to be strengthened before she really started walking. They didn't like being woken up and revolted with debilitating muscle spasms that would leave Faith sobbing, begging the pain to stop, begging for pain killers. There were times that she couldn't make it up the stairs and had to be carried and times that she would cry out at the simple act of sitting down or changing position. These episodes weren't the dramatic embellishment of a pre-teen girl. They were real. I would touch her leg and feel her muscles twitching and tightening uncontrollably. There was little that Chandler and I could do for her but sit with her so that she didn't suffer alone. That was hard, very hard, because we were helpless and we knew it. As a result, I dreaded the evenings knowing what was to come. I began to wonder if this was how it was always going to be. Would our daughter fight her way through the hell of cancer only to come out on the other side addicted to OxyCodon and muscle relaxers in an effort to deal with chronic pain?!? I know that she is only 12, but these are the thoughts that plague an exhausted mother who has worked all day and now sits helplessly by as her daughter deteriorates into a ball of inconsolable tears. This was all the result of just building muscle. No unassisted steps had been taken yet. No visible progress made. Faith was losing some motivation and required constant reminders about her role in the recovery process. The only way we could mark her progress was to make note of how many days she did not require narcotics. She's 12.So, we finished chemo, the scary part and we walked head first into rehab, the hardest part and I was still angry. I wouldn't wish this on anyone.
Finally, two weeks before school, Faith was given the green light to ditch her crutches and start walking. I was anticipating a gradual process, and it is, but I was not expecting the text from Chandler that Monday morning with a video attachment of our girl taking her first steps alongside Lauren. I don't recall the exact moment that Faith walked as a baby. I'm sure it was emotional and exciting, but not like this was. I couldn't speak. I could barely breathe as I watched my daughter confidently walk all by herself. No crutches, no walker, and certainly no wheelchair. YES! She did it! I was overcome with relief and joy and pride and this girl of mine, of ours! Faith had a personal goal to make it to junior high without a wheelchair. She wanted to ride the bus with her friends. Not the "short bus" that picks up the special kids right in front of their houses, but the bus that she was going to meet at the same stop as everyone else about a third of a mile from our house. I doubted her. It didn't seem possible, but...
These are all things I am mad about, but not her, not Faith. I asked her last week if she thought last year was hard and she didn't hesitate to answer "no". I don't think she realized she missed the school stuff and I know she doesn't worry about "what-if's". Last year she got to spend one-on-one time with one of her favorite teachers. Faith has never been one to fret about what she doesn't have but rather one to relish in what she does have. Like my boss says, "what's so is what's so" and Faith is a What's So kinda girl. That makes me mad at myself. Why can't I be happy that she is going to be ok? I know of many families who are fighting very different, very uncertain battles. Battles that may take their babies from them. When I pause my pity party long enough to remember how much worse we could have had it I am very disappointed in myself. This I didn't want to share in a blog, but it's a real part of this story.
After the effects of chemo had subsided, Faith's body began recovering and growing again. Her eyelashes and eyebrows were the first to come back, followed by the rest of her hair. We kept our fingers crossed that her leg hair would stay away, but no such luck. The hair on her head had begun its return, too. It was the softest, most beautiful thing I have ever witnessed. I think it was particularly beautiful because of what it meant, but, really truly, it was the softest thing I'd ever touched. Faith has been very gracious in allowing EVERYONE a rub! Along with hair growth came bone growth. That was the golden ticket we had been waiting for. Her surgeon met with us right before Memorial Day and gave us the green light to begin PT. I don't know how we didn't plan for it, but we had no one lined up for this. We hadn't even considered the fact that to go from non-weight bearing for 9 months to walking would actually require the aid of a physical therapist. Actually, we knew it would, but it never occurred to us to get that person lined up before we needed one. So, I scrambled and thankfully found Lauren at Preferred Rehab through a friend. She is amazing and she and Faith instantly clicked. Faith had to ease into it since her muscles had atrophied and needed to be strengthened before she really started walking. They didn't like being woken up and revolted with debilitating muscle spasms that would leave Faith sobbing, begging the pain to stop, begging for pain killers. There were times that she couldn't make it up the stairs and had to be carried and times that she would cry out at the simple act of sitting down or changing position. These episodes weren't the dramatic embellishment of a pre-teen girl. They were real. I would touch her leg and feel her muscles twitching and tightening uncontrollably. There was little that Chandler and I could do for her but sit with her so that she didn't suffer alone. That was hard, very hard, because we were helpless and we knew it. As a result, I dreaded the evenings knowing what was to come. I began to wonder if this was how it was always going to be. Would our daughter fight her way through the hell of cancer only to come out on the other side addicted to OxyCodon and muscle relaxers in an effort to deal with chronic pain?!? I know that she is only 12, but these are the thoughts that plague an exhausted mother who has worked all day and now sits helplessly by as her daughter deteriorates into a ball of inconsolable tears. This was all the result of just building muscle. No unassisted steps had been taken yet. No visible progress made. Faith was losing some motivation and required constant reminders about her role in the recovery process. The only way we could mark her progress was to make note of how many days she did not require narcotics. She's 12.So, we finished chemo, the scary part and we walked head first into rehab, the hardest part and I was still angry. I wouldn't wish this on anyone.
Finally, two weeks before school, Faith was given the green light to ditch her crutches and start walking. I was anticipating a gradual process, and it is, but I was not expecting the text from Chandler that Monday morning with a video attachment of our girl taking her first steps alongside Lauren. I don't recall the exact moment that Faith walked as a baby. I'm sure it was emotional and exciting, but not like this was. I couldn't speak. I could barely breathe as I watched my daughter confidently walk all by herself. No crutches, no walker, and certainly no wheelchair. YES! She did it! I was overcome with relief and joy and pride and this girl of mine, of ours! Faith had a personal goal to make it to junior high without a wheelchair. She wanted to ride the bus with her friends. Not the "short bus" that picks up the special kids right in front of their houses, but the bus that she was going to meet at the same stop as everyone else about a third of a mile from our house. I doubted her. It didn't seem possible, but...
Kady and Faith first day of school.
Madi, Faith, and Abby about to walk to the bus stop.
There isn't a kid around who was more excited for school to start than Faith was. Chandler and I asked her several times if she was nervous or worried and every reply was the same. Nope, she was ready and looking forward to it. I, on the other hand, was nervous enough for both of us. What if she gets teased about the way she walks? - she does still have an awkward gait. Her hair? - I've heard of a girl in Faith's same situation who had kids asking her why her hair was butch - was she a lesbian?!? Her hat?-students aren't allowed to wear hats to school. What if a faculty member forces her to remove it? Her leg? - what if her leg spasmed like it did the day before school started for no reason at all. She was feeling good and was excited to do lunch and some last minute school shopping when it struck and had her crying in the Wendy's bathroom trying to stretch it out. Tears in Junior High has to be right up there with wetting your pants. Chandler and I have tried to be honest, up-front parents with our kids so we told Faith our concerns about the teasing. We practiced by saying rude things to her and wouldn't let up until she finally looked us right in the eyes and blurted out "I HAD CANCER!" That outa shut those mean kids up...right?!? We did all we could think of to make for a successful first day/week/month. I emailed her teachers about the events of the last year, I brought Faith's meds up to the nurse along with her wheelchair, and I enlisted the help of every kid I knew who would be in Faith's same classes to help her with her backpack and watch out for her.
Faith limped off to 6th grade last year with an unknown tumor in her leg. One year later she limped off to 7th grade cured, cancer-free, a titanium femur in place of the diseased bone. She refused to let us drive her or walk her to the bus stop. Faith, her best friend Madi, and our neighbor Abby confidently walked away to wait for the bus to Willis Junior High. I went inside, wiped my tears, poured a mimosa and waited for my friends...well, what else could I do?!? Faith returned home that day exhausted and exhilarated. She stubbornly stopped in the nurses station first thing that morning to drop off one of her crutches, making a point to anyone who knew her story that this girl was here to stay! She didn't get teased, she didn't need medication, and she walked in and out on her own two feet. This girl never ceases to amaze me. She doesn't roar in the traditional sense of the word. That's not her style. She roars quietly and confidently through all of our doubts, through all of the pain and struggles, through the dark times to quietly come out into the light, look that shadow right in the face and smile! She did it and I can't wait to see what else she can do!
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