<![CDATA[Fix Faith's Femur - Blog]]>Sun, 10 Jan 2016 03:15:13 -0800Weebly<![CDATA[The Story of My Life]]>Tue, 02 Dec 2014 05:52:45 GMThttp://www.fixfaithsfemur.com/blog/the-story-of-my-life

Chandler put that song on one of the CD's that he made for Faith. The song still plays with some regularity on the radio and it always takes me back. I know it wasn't that long ago chronologically speaking, but still, it was a lifetime ago. The story of my life this time last year was a story of uncertainty. Faith was still undergoing chemo. Her body was taking longer to recover after each round as it was tired from trying to heal from that monumental surgery. She was on homebound schooling and was bald as the day she was born. The girls were excited about Christmas coming and all of our family being together. I just remember not knowing how I felt.

The story of my life today is very different. Faith is better. She is SO much better. Her hair is growing back in a super cute way. She is sore less frequently and she is healthy! She has left the hollow cheeks and sunken eyes behind and replaced them with shiny, baby blues and a smile that lights up the room. She laughs a lot and it is contagious. She is in school and is doing so well that she made the principals list, participates in student council, and has earned a spot in the school spelling bee!

My story, our story, isn't over. It never will be. Faith still has more surgeries ahead of her and she still has a lot to do recovery-wise. I still live with fear that one day her laugh will be replaced with a cough that doesn't stop. The cough that indicates that IT's back and IT's spread to her lungs. I was driving home from an errand Saturday morning in Chandler's car. The Taylor Swift song, "Never Grow Up" came on and I started thinking about how sweet I used to think that song was. Now, it sets a mild panic in my heart urging Faith to grow up quickly so that she can experience all of the milestones, the rights of passage, she could've missed. She still could miss. Her first kiss, driving, earning her own paycheck, college, marriage, babies. "Change the station" I said to myself, but, no. I'm a chick and I was feeling blue and allowing the self service pity party until my friend Kevin pulled up next to me. He made a couple of wise cracks about me driving Chandler's car (a minivan) and that bad mood literally blew right out the window. Thank God for Kevin. He has no idea what he did, but he reminded me to put my fear in my pocket. I respect that it's there, that it always will be, but that I don't want that to be the story of my life.

My story includes a roller coaster of a year that has left me a different person. I'm going to work hard to cultivate the good changes and not dwell on the not so good ones, like the lingering worry. I like my calmer side that rarely yells. I like appreciating the good in the people I encounter and not judging so much. I know that everyone has a story and something they have to deal with and to be kind (you never know, that crazy driver who just cut you off may be frantically trying to get a feverish kid to the hospital). Before I got married, I never imagined that the story of my life would include children. Chandler changed that. Now, I think about what a boring story it would have been without them. This year has helped me become the mom I wanted to be. I'm going to keep working on that for sure.

I began to share this story as a way of notifying our family, friends, and neighbors of Faith's status. It started out as her story and ultimately turned into my story of how I was dealing with it all. I realized that writing this blog helped me not only share my story, but it helped me to sort out my feelings which were sometimes a big jumbled mess in my heart. I am grateful for the words of encouragement so many people shared with me as a result of this blog. I am grateful that I have a way to look back and recall all that has transpired in such a short time. I still have a few half-written blogs I may finish one day, but for now, I will close with this...

Words cannot discribe my gratitude for the endless help from our families, our friends and neighbors, and from perfect strangers. There were times when that lifted us up so that we could make it through the next step. We, as humans, as people, need to help each other. I will continue to be giving of my love, my time, and my belongings to help another in need. I know how much it helps.

I know the real story isn't the cancer, but how we all found a way to let IT bring out the best in us and in our community AND how, in the end, CANCER SUCKED IT (like a big lollipop)!!!

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<![CDATA[What a difference a year makes!]]>Sun, 03 Aug 2014 22:25:51 GMThttp://www.fixfaithsfemur.com/blog/what-a-difference-a-year-makes
Picture
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

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...

Picture
Kady and Faith first day of school.
Picture
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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<![CDATA[Great Friday!]]>Sun, 20 Apr 2014 00:28:51 GMThttp://www.fixfaithsfemur.com/blog/great-friday

I guess the best place to start is the beginning. 5:30am yesterday, for the 3rd time since we tucked her in Thursday night, Faith's voice rang through our resurrected baby monitor, "I have to go potty". And the day began. We showered, got dressed, and helped her hop slowly downstairs. Chandler was out getting donuts as a special treat to share with the clinic staff on this momentous day. Then, the damn dog started barking. Nothing unusual, but he didn't stop so, I went to see what had him all fired up. A white limo, Anne, Rich, Adam, Ashley, my mom and sister, and a gaggle of sleepy-eyed, one sock on-one sock off, bed-head neighbor kids! NO WAY! I swallowed my emotions down. This was gonna be a long day and water proof mascara can only take so much. I don't know how we got so lucky to be blessed with these angels we call neighbors who have become our friends, but we did. They all pitched in, 13 ways, to send us off in style and, as Rich pointed out, bring us home! This was too cool not to share, so we loaded the neighbor kids up in the limo, gave them some donuts, and pretended to drive to Rocky Point. Fun!

The ride down was quiter than I would have suspected. Maybe we were all thinking about what lie ahead, but probably we were all just pooped. It really had been a long week and it was relaxing to be careless passengers in a nice ride. We arrived at the clinic to find that Faith's infusion chair had been decorated with balloons and a picture she had been working on to illustrate particular moments in her journey. Uncle Scott stopped by with a breakfast treat, the grandparents from Missouri stopped in, and Nabisco Greg and his crew came! They had games, treats, and Stuffy. Kady and Faith helped to show Stuffy from room to room delivering treats to everyone until Faith got too tired. Part of her premed protocol is Benedryl. I hate that stuff. It's such a party-pooper. It always takes fun, smiley Faith and leaves sullen, tired, snappy Faith instead. So, she rested while the last prescribed chemo pumped into her body and Kady and I continued to help our Nabisco friends out. It really lifts me up to see the faces of kids and adults when a life size stuffed Oreo walks up to them. How can anyone in their right mind not smile at that?!? I hope Nabisco continues to visit the clinic after we are no longer required to be there. Hint hint ;)

The bag was almost empty. So close. Wait for it, wait for it. The swirl of emotion in our area could have started a funnel cloud. It seems so counter-intuitive, but there was equal parts happy, sad, joy, sorrow, a healthy dash of fear even. What if? So many of those. I've been asked several times over last few days, or more precisely, told how happy I must be. This is the analogy that best comes to mind. Imagine that you have a large sum of money due for taxes. Sucks, but for whatever reason, you do. You aren't sure how you are going to come up with the money initially, but you work it out. You take some from savings, you give up some unnecessary fun expenses and then you sell a special piece of jewelry and come up with the money. You did it! You reached your goal. Are you happy? Not exactly. Relieved is probably a better word. We've bought some time until next tax day. I said with conviction as I left the clinic that we are never doing that again. NEVER. Maybe if I say it enough and believe it enough, it will be true. But...

I hugged Allison and Kim. Kissed their cheeks and told them I loved them. I do. They, along with many others, have taken care of our baby. They helped make sure she lived, but they've taken care of us all. There is so much more than administering medication to their jobs. They are comforters of tearful, terrified moms. They are entertainers of bored sisters. Best of all, they are the very best ego inflaters of bald 11years old's and tired, weary-looking moms. Faith is so loved and so much the center of attention when she is there that I know she will be a bit depressed when it's gone. Thankfully, Chandler and I have grown to be better, more attentive parents after this chapter in our lives and we will not let her deal with it alone.

We got into the limo spent. Tired, physically from the clockwork interruptions out-patient fluids bring, but more so emotionally. It really ended up being a wonderful gift to not have to drive home. I worked hard all morning to keep the waterworks at bay, but exhaustion took over. I am grateful for the strong shoulder I have to lean on. Chandler has never made me feel bad for being emotional. I tried to apologize for my struggle accepting our cancer. At first he said "it's ok", but then he corrected himself. "There's nothing to be sorry about." We compliment each other nicely.

Balloons. Lots of them lined our stairs. 43 happy faces and 5 green stars. Green's her favorite color and her moniker at PCH is Smiley Faith. "Who did this? Who's been in our house?" I asked Chandler. "Jaime did it...I asked her to". Waterproof mascara, that's all I have to say. How lucky am I, but even more, how lucky are they. I didn't have that kind of love, adoration and devotion from my dad. I am envious in a lime green way. Again, I am in awe of the lengths our friends will go for us.

I used to feel like I needed to compete with Chandler's thoughtfulness. I failed to mention that he had another custom CD made for our last ride down for chemo. It brought me to tears and I gave him the bird for it. But, I realize this is his gift. He doesn't think less of me for not coming up with special gifts and gestures, at least he better not. He provides the colorful pictures in our story and I write the words.

Wendi, Dan and the kids were arriving soon. Kady had a birthday party to get to. We has to get groceries for tonight. Life goes on you know. No time to ponder and wallow in emotion, we've got shit to do! After running here there and everywhere, I was just about to pour a glass of wine and settle in for a nice visit with the family when "mom, did you remember to get my ice cream cake" asked Faith from the couch. Her sister and cousins were playing outside and she was attached to her backpack of fluids watching her iPad. Shoot! In my former life I would have apologized and promised to get her ice cream cake tomorrow, but, things are different now. The child asks for very little even though a lot is asked of her. I grabbed my purse and my keys and headed for 31Flavors. "I'll call you when I get there to let you know your choices". She opted for the strawberry flavored ice cream with vanilla cake, appropriately shaped like a strawberry (the food she most anticipates savoring again). Before I left, Faith said to not bother writing on it, but the lady asked. Based on the look on my face, she pushed. So I had her personalize Faith's cake. She returned from the back room with my newly improved ice cream cake in tears explaining that she had had a very long hard day. Based on the look on her face she was humbled to put her own newly insignificant troubles behind her. I didn't mean to do that, really!

We shared that cake last night, Wendi, Dan, Katherine, Ryan, Chandler, the girls and I. We hadn't planned to make it a ceremonial thing, but it evolved that way. Faith lit the center candle. We all took the auxiliary candles and lit them off of the center candle. Each of us shared our own personal worst moments of the journey. Then, with good advice from my niece to not spit (Katherine, bless you for saying it out loud), we ALL blew them out.

Good bye cancer. Let's close this chapter.

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<![CDATA[The Beginning of the End]]>Mon, 14 Apr 2014 17:07:13 GMThttp://www.fixfaithsfemur.com/blog/the-beginning-of-the-end
Today is the first day of the last round of chemo! It's the beginning of the end of this leg of our journey. Our journey isn't over, far from it. We've just finally come to the fork in the road. Thankfully, we get to take the path towards continued recovery for Faith, learning how to walk again, rather than the alternative. We've known of kids whose journies have ended and now their families have to learn how to go on. Those stories rock us to our core.

So, this morning we all were buzzing a little. Well, everyone but Faith. She seems very unaffected by this huge milestone. Normally her apathy would really irritate me, but it's what's gotten us this far. I can't be thankful that she never cried for hospital admissions or chemo rounds and then expect her to be ecstatic this morning. Truthfully, I can practically count on one hand how many times she's cried. That Friday evening when we took her to the hospital the first time she cried the whole way. We tried to cheer her up with French fries and soda, but eventually gave in and just left her alone. The next was when we had to give her the post-chemo shot at home, in her bottom. Chandler and I were dumbfounded that she made it through the biopsy surgery and the port placement without so much as getting misty-eyed, but this shot sent her into hysterics.  Another time she cried when we told her she would lose all of her hair, but when it actually began to fall out, not a tear fell. She's had a breakdown about missing a birthday party and then the Demi Lovato concert, but that's pretty much it. One thing is for sure, she will be sad when we leave the clinic on Friday. She won't cry, that's not her way, but she will silently mourn the apparent loss of her friends at the clinic. We'll be back, more than I think Faith realizes, but they won't be long visits where she can be the center of attention for the better part of the day, the week really.

This morning, Kady was jabbering away about how excited she is for the end of chemo. She listed all of the foods that she will be able to eat again. That's been a big deal around here. Both girls are thrilled to be able to enjoy fresh berries again. They want to eat at Subway and Taco Bell, silly, but they are kids. I think Kady is most thankful that she can worry less about her sister. She worries a lot.

When we first started they warned us that we would be wary of the end. Nervous that maybe we didn't get it all. Fearful that if we stop now, Faith might get sick again. I am terrified that Faith will get sick again. So much so that the thought of it makes me feel physically sick, but I'm done with chemo. If it hasn't gotten it by now, then, well, I don't know. BUT, I do know that I am DONE. I no longer wish to poison my daughter, rendering her body defenseless against common germs. I am so tired of seeing a tube protruding from under her neck where her port line is. I want her hair to grow again. I want people, well-intended or otherwise, to stop looking at her with that pitiful question mark on their faces. I never want to give her another shot, or change a bag of fluids in the middle of the night. I want her to grow again and be taller than her baby sister. I need her to go back to school and socialize and normalize and be a part of the group. I can't wait to lick her drippy ice cream come and not worry that I may of just made her sick. I am ready to get our life back!

So we will celebrate even though this week will be exhausting. The five day chemo's always are with trips to the bathroom every 2-3 hours day and night and heavy backpacks of fluid to lug around. We will celebrate that Good Friday means something very different to our family now. And then, on Monday...maybe in a few Mondays when her body recovers, we will start the next leg of our journey, stronger but weaker, happier but reserved, and thankful with a smidge of anger always lurking in the back.

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<![CDATA[If You're Going Through Hell...]]>Fri, 07 Mar 2014 03:52:09 GMThttp://www.fixfaithsfemur.com/blog/if-youre-going-through-hell
Last week I had an emotional visit to the clinic. Partly because I was a walking zombie from being awakened often throughout several nights with Faith's near fever miss and cold and Kady's bad dreams, but party because for some reason I decided to ask the doc the question that people have been asking me. The one I've been asking myself for awhile.  Why?  Why are we still poisoning Faith. The surgery showed that we had completely killed the tumor and all of the scans came back clean. Every time we treat her with chemo her body gets weaker and weaker and it becomes harder for her to fight off infection.  So, the inconvenience of all of these treatments was not my concern. It's that I'm afraid. Terrified, really, that we are going to kill her.  I keep replaying the conversation I had with a rather chatty doc in her hospital room during one of our fever admissions and he made it clear that the cancer isn't what kills these kids, it's the resulting infections that take over their weakened bodies. So, I asked it. I fully expected her to authoritatively dismiss my question as silly and encourage me to press on. BUT, what I got was a pause followed by "that's a hard question to answer" that ended in "I don't think one more or less chemo round makes a difference but, your so close to the end, you might as well see it through".  That was a bit of a blow to my confidence as well as my composure. The tears started to well up. I tried to build my ice cream Sundae, only to find that it doesn't work any more. Damn it! The flood gates opened when I heard the crushing words out of her mouth..."there are only studies for 14 rounds which indicates a 75% non-recurrence rate. No studies have been done for 12 chemo rounds". What?!? 75% non-recurrence rate. That means 25% recurrence rate. If I had a 25% chance of winning the lottery you better step aside so I can run out to the nearest convenience store! How is it that I had never heard these stats before?!? So, needless to say, the rest of our time at the clinic was a bit of a downer. I was sulking in my emotions. Anger, sadness, but really under it all was fear. I'm scared and I don't like that feeling. 

Faith asked for ice cream when we left. The new, more relaxed 40 year old in me agreed. We stopped at Thrifty for some cheap, artificially flavored scoops of deliciousness. While I stood there waiting for Faith to make up her mind, I glanced up and saw the "add-ins menu" for the smoothies you can get there.  At the top of list was bee pollen. I've always loved bees. Crazy, I know, but I admire their community organization, their hard work, the beauty of their little bodies and the amazing perfection of their complex honey combs. I also really like honey, but back to the point. The description of the bee pollen included the statement "anti-cancer qualities". While I've never been a big believer in supplements, this, for obvious reasons, caught my attention. Don't get me wrong, we still got the ice cream minus the bee pollen, but it made me think. Maybe, this scared, pissed-off funk I'd been in could be lifted by doing something. That's kinda how we roll anyway. We get involved, we stay active....well not in politics, but in our community at least.  So, I was driving down the rode, enjoying my mint chocolate chip ice cream cone thinking that I needed to learn more about ways to boost Faith's immune system. My aunt had sent me an article about the fact that we all have cancer in our bodies and that if our immune systems are suppressed at the same time the cancer cells decide to have a party in our bodies...voila, our lives are changed forever. I know that we are already a fairly healthy and health-conscious family. The kids eat well-balanced meals on most occasions, but we could do more. So, doing more, or at least the idea of doing more (quite honestly, I tend to get excited about things and then loose momentum) will give my brain a shove in a positive direction.
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We have also decided to stay busy by helping the organizations that have helped us.  This Saturday our family and over 40 of our friends, neighbors, and coworkers will join us in the Grand Canyon University 5K Run to Fight Children's Cancer (we use the term run loosely!).  I am learning to be discerning when it comes to who we support and where we funnel our donation efforts. While I love PCH, their fundraising efforts are very general and can be used to buy supplies all over the hospital. I want to help the clinic and the groups of people who help the clinic. This 5K is raising money for the Children's Cancer Network. They are the group of people who hosted the Valentine's party that Faith enjoyed a few weeks ago. They supplied us with a care package at the beginning of treatment which included a binder for all of our notes, a pill cutter, gas cards, and other items we would have never thought we would need. Over Christmas, I met a family in the clinic who was grateful for the Christmas tree and gifts the CCN supplied them with while they stayed the whole month in the Ronald McDonald house. they get wigs for kids who prefer to wear those and they host All About Girls parties to  help tweens and teen girls feel pretty even though they don't think they look it. They make life better for families whose lives have been turned upside-down.  They have a great website ChildrensCancerNetwork.org.  The team we have formed for this race is called FixFaithsFemur...catchy, huh?!? You can go to www.runtofightcancer.com. if you would like to contribute.  Choose the donate tab and then click on the grey box that says TEAM. If you would like to join us, you can register the morning of at Grand Canyon University and message me so that you can join our group.  I would like to send a big Thank You out to Scott who helped with the design and ordering of our team shirts and to Kelly who did all of the work setting up our team and managing it. I could not have gotten this all done without them.

Additionally, I have been asked to help the Children's Fight for Life organization. They are the group that hosted the Casino Night Gala that Chandler, Faith, Madi and I attended last year.  They specifically raise money for the Center for Cancer and Blood Disorders at PCH. The proceeds are used for technology, research, clinical program development, and social and psychological services.  I will play a role in gathering sponsors and auction item donations. The event is planned for Saturday November 1st.  This is the 9th year that they have put on such an event and I am excited to be a part of it!

I've been told that I am taking on too much between working, Faith's various appointments and special needs, and all of these social/philanthropic outlets, but I enjoy it. It's good to stay busy because then I feel like I am doing something about a situation that is really out of my control.  While Faith and I were running errands on this particularly busy day, the song Going Through Hell by Rodney Atkins came on the radio. I smiled at Faith and said I like this song and she agreed. We turned it way up and sang along boldly, "if you're going through hell, keep on going. Don't slow down, if you're scared, don't show it. You might get out before the devil even knows your there.  If you're going through hell keep on moving. Face that fire walk right through it!" So, that's what we are doing.  I always say that it could be worse, that there is always someone who is worse off than us and it's true. I was surprised when I was talking to the mom of a leukemia kid and she seemed to feel badly for us having to do chemo every 2 weeks for 9 months when she has years of treatment. Her kid has hair right now, mine doesn't . She felt badly for us having to tax Faith's body so harshly.  I feel badly for her that the light at the end of her tunnel is so far away.  We're both going through hell, our own individual hell's, but we'll just keep on going before the devil ever knows we're here!

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<![CDATA[Plan C - A Happy Ending]]>Wed, 19 Feb 2014 19:54:58 GMThttp://www.fixfaithsfemur.com/blog/plan-c-a-happy-ending

Saturday morning before our night nurse left, she stopped in our room to share some news. Faith's ANC had skyrocketed to over 1300! Hallelujah! She hadn't registered a fever since Friday morning, so there didn't seem to be a reason to stay. Her platelets were fairly low, so they transfused her, but we were still discharged Saturday afternoon by 2pm. Faith was cleared to go to the concert and she was thrilled! I was cleared to enjoy my 40th birthday with my friends and my husband.

The light at the end of the tunnel is getting closer and brighter. Faith has 4 out-patient chemo treatments remaining. We hope that she will be done by the end of April. Her surgeon will clear her to bear weight shortly after chemo is completed and the bone has begun to grow again. For now, Faith has been cleared to sleep on her side, sit on the floor to pet Saki, and take a bath. What seems like little things are all big deals to her.

Thank you for all of your prayers and positive thoughts. They mean so much to our family and they really make a difference! Life is good!

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<![CDATA[Not what I expected]]>Sat, 15 Feb 2014 12:27:47 GMThttp://www.fixfaithsfemur.com/blog/not-what-i-expected

I certainly didn't expect to be here again so soon. Niavete or wishful thinking, who knows, but one thing's for sure, I came with a bad attitude. A mixture of sadness, anger, guilt, and fear had me fighting back tears from the moment I read the thermometer last night.

Believe it or not, we don't always have major events planned, but this weekend we did. Faith was looking forward to a sleepover birthday party at one of her bff's tonight, Valentine's Night. Chandler, Kady and I were invited to a gourmet dinner party at our dear friends house for a group family Valentine's feast. Tomorrow, well, tomorrow is my 40th birthday. Hmmm. Chandler (honestly, Chandler and I) had planned a party to welcome my official old age status with friends and with style. The girls had a special evening planned for tomorrow. See, Wednesday morning, I got a call from Bridget at Hopekids. She was complimentary of my latest blog about Kady and wanted to share tickets to Saturday nights Demi Lovato concert...in a suite...with parking passes. Too good to pass up. Kady has a friend who is being teased at school for a rash she recently developed and could maybe use a special night out, so I reached out to her mom to help. She was planning to take my two girls and her daughter to enjoy the concert while we stayed home and hosted a small dinner party. Well, truthfully, Faith's counts were so low, that I'm not sure that she could have done any of it, but who knows.

So, last night at midnight when we brought Faith downstairs in preparation for our emergency trip to PCH and I looked over at the kitchen table to see the Valentine's baskets Chandler and I thoughtfully put out before we went to bed, I struggled to hold it together. I thought back to the busy day we'd had. I had gotten careless with lockdown protocol and taken Faith to Target, a doctors appointment, and lunch on day 11. I knew better than that! Faith, who rarely cries, was sobbing at the realization that her fun weekend was no more. Her tears were my responsibility and I was mad at myself and guilty for being so wreckless with her health. A fever is a big deal in a neutropenic kid. I remember when this first started the doc explaining to me that it's not usually cancer that kills, but the infection that results from a compromised immune system. Shit! I needed to hold it together for Faith.

By the time we got from the ER to the room it was 4am and we were exhausted. By the time we got settled, met with several 7th floor docs, switched nurses, and got to a point where the door wouldn't open every 5 minutes it was almost 9am so we went into cave mode and slept. When we woke up several hours later , it was like Christmas in pink! Quietly, while we slept, Valentine's balloons, cards, candy, etc had found their way to Faith. The pink shower contined all day with a party in the family room by Children's Cancer Network and people dropping off gifts, nice gifts, like a beautiful Silpada necklace, tee shirt and blingy cup from Hopekids. Kelly even snuck in a little Valentine's Vino for happy hour. It was hard to maintain a poor outlook when there was so much good around us. That's just not us, either. We aren't mopers, we're the Moore's!

Plan B. Chandler and Kady went on the Valentine's date and Faith and I hung out at the hospital and to watch a chick flick. Not bad. We cancelled the party. I'll go to the concert with Kady, Tatum and Linda and Chandler will stay here Saturday night. We will pray Faith comes home Sunday. So far, she has been fever free since early Friday morning.

So, this is not the way I expected to celebrate my 40th birthday. Ironically, Faith was sick on my 30th birthday and Chandler was out of town. Not really what I expected back then. Turning 40 is not what I expected either. In my mid-thirties I had planned a big party for this day. I had a facility in mind that I wanted to rent out to throw a bash big enough to celebrate what I though back then was a big deal. Turns out, as I got closer to 40, it became less and less significant. I'm sure Faith's illness has impacted my outlook, but I think it's more than that. I've changed. I really do feel more at peace within myself.

My 20's were fun! I was 24 when we got married and Chandler and I agreed to wait 3 years on starting a family. Good decision! We had a boat and used it. We took trips, some impromptu ones. We lived and loved our life, as people in their 20's should. In our 20's we really didn't worry about much of anything. My 30's were a decade of lessons, some harder than others. Having kids brings about a whole slew of lessons. Babies, and the resulting toddlers and children, are cute and fun and true blessings, for sure, BUT, they are also stressful. You don't know what you're doing half the time, always a little afraid you're screwing it up. I have spent a lot of time and energy in my 30's stressing about my weight and my appearance. I learned a lot about friendship in my 30's. I drifted away from my college friends, a decision I will always regret, but I'm working on rebuilding that now. I also had a painful lesson that resulted in the loss of a close friendship that took years for me to get over. From that, I now take into my 40's a true understanding that I cannot control how other people feel and act. I also am really, truly, finally ok with the fact that not everyone likes me. Life isn't a popularity contest. I don't want to waste precious time spinning my wheels and fretting over the handful of unhappy when there are so many things, so many relationships to be grateful for and to celebrate. I have a wonderful, diverse circle of friends that I know love me. This particular year I have not been able to be the friend I want to be to them, but I don't have as much to give this year as I will in coming years. Hopefully, we can take turns and I can be the kind of friend to them that they have been to me this year. Going into my 40's, I know my family loves me even though I am a real brat sometimes. And, I KNOW my husband loves me. We are best friends, we laugh together, we sneak little moments together, and we trust each other. I know this much, too. I am a good mom. I didn't start out that way, but I am striving to become better. I know that I am not perfect. Honestly, I don't really want to be perfect, perfect is boring. I'm still working on the weight thing. Some days I care less than others. By care, I mean accept. I eat reasonably well, I exercise a reasonable amount of time. Perhaps one day I'll reach my goal, but my biggest goal with my appearance is to pass along to my daughters some sort of self-love. I don't want them to think that it's alright to put so much emphasis on their physical appearance. I'm hoping to accomplish that by 50...hey, like I said, I'm not perfect! So, bring on my 40's. I'm not scared. Honestly, I'm not thrilled either. I regarded my parents as old when they turned 40. I am dubbing my 40's the decade of acceptance, until I change my mind. They are only just here now and the best part has always been that the chapter has not yet been written.

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<![CDATA[May I have the envelope please]]>Wed, 12 Feb 2014 04:40:07 GMThttp://www.fixfaithsfemur.com/blog/may-i-have-the-envelope-please

The award for most supportive role in a series or drama is...Kady Moore! Applause! Cheers! Kady has always been a loving, nurturing soul. From the time she was a toddler, she would place baby dolls all over the floor, face down, and cover them each with blankets. Then, she would patiently move from baby to baby and pat their backs while they fell asleep, kiss their heads, and then move on to the next one. We called them Kady's land mines.  There must have been over 20 of them at one time. At the age of 2, she successfully ran a very busy, albeit sleepy, daycare center!

That nurturing nature has only grown and blossomed in her. She is 8 now. She has matured beautifully from the hot-tempered, stubborn toddler who used to throw  herself on the floor, face down, in a fit of rage when she didn't get her way to a tender-hearted, easy-going middle-schooler.  Kady gets her temper from me, I hate to admit. She would be so visibly upset at times that her face would turn down in a sincere, non-duplicable frown that exactly resembled the front grill of a Mini Cooper, which afforded her the nickname, Cooper. "Oh uh, mom, she Coopering" Faith would say.  Thankfully, though, Chandler, who has always maintained a calm center, would be the one who could settle her down. He would hold her tightly while she thrashed about and explain, once she was calm enough to hear his words, that she needed to sit alone until such time as she was composed enough to join the rest of the family.  I, on the other hand, would just lock in her in a time-out and hide in the other room listening to her kick the door while I wondered what sort of brain damage occurred during her difficult delivery.  Over the years, it took her less and less time to compose herself, so that now, the worst she gets is a little huffy.

Kady has not yet been blessed with the wonderful circle of friends that her big sister has. I don't know why that is. She has friends, some really nice ones, but I think her favorite friend has always been Faith. Sadly, Faith usually blows her little sister off and finds Kady's admiration more of a nuisance than a blessing. I am the little sister in my family and was dealt with similarly by my own sister, so I feel like it's my mini mission in life to make Faith see all of the wonderful qualities her little sister has.  

The day we took Faith's x-ray, the day her pediatrician called to say that we needed to go right away to PCH, is a day I wish I could do over.  It all happened so suddenly and the doctor made it seem so urgent that we neglected to really think about what this was going to do to Kady. I remember it clearer than I remember most things. I ran across the street to my relatively new neighbors, the Scott's, explained what was going on and asked if Kady could spend the night. Kady enjoyed playing with their 5 year old daughter and 3 older sons, but she really didn't know them back then and had never slept over at their house.  She was scared, confused and tearful, but she sucked it up an went. The Scott's were wonderful to her. They kept her busy and fed and I am grateful to have had them, but that was the wrong decision. An epic parental failure in my eyes.  We should have taken a little more time to consider what Kady needed. I don't really know why I didn't have her go to my mom's or, better yet, have my mom go to her.  I just don't remember that part. I can't take it back, that much I know.  I used to joke around that Chandler and I weren't saving money for weddings, we were saving money for counselors because it seemed inevitable that we will screw the kids up somehow. Well, Kady, who used to enjoy sleepovers has essentially refused to go on any sleepovers since then.  Getting her to go to a play date is a struggle, too.  She just wants to be near home.  That makes me really sad for her, although I guess the alternative would be worse. What if she never wanted to be home? Truthfully, I kind of feel the same way. I just want to be home. Safe and sound in our own little family fortress.   I was so concerned about Kady's sudden abhorrence of sleepovers that I spoke with Kim, the PCH child life specialist, about possibly getting Kady some counseling. Bless that woman for reminding me that a lot of siblings of cancer patients sometimes wish that they were sick, too, so that they could stay home and have more time with mom and dad. With all of the fear and uncertainty over Faith's health, it's no wonder all Kady wants is the stability of home. If course! How simple and how true. There's nothing wrong with Kady, nothing at all.

After we got our bearings Chandler and I decided that we would work diligently to not leave Kady out and make it all about Faith. We have planned special dates with her, had lunch with her at school when we could, and, from time to time, brought her presents from the hospital. When we were spending so much time at the hospital, Kady would look forward to coming to see Faith. Now that it's RSV season she is not allowed past the 2nd floor, a fact she is most unhappy about.  Thankfully, there are no planned trips back. Faith belongs to  a program called Chemo Angels. The Chemo Angels are people who have gone through chemo and who volunteer to send Faith little packages to cheer her up along the way. The packages come about every other week and contain anything from stickers and markers, to candy and new books.  Chandler noticed that Kady would begin to slump every time Faith got another package, so he started to "mail" Kady packages. He would put a daddy love note and include some stickers, candy or gift cards for her and slip it in the mail box. She would light up when she got those. So much so, that she has voluntarily made checking the mail her responsibility!  Once again, it's the little things that truly make all the difference. And, once again, I have to say how blessed I am to have married a man that is my friend, my love and a wonderful dad!

One day while Kady and I were driving home from the hospital, I asked her what she thought about all of this.  She said that she was sad and wished her sister wasn't sick. I asked her what she REALLY thought about it.  How was it affecting her.  I gave her permission to be as honest as possible by including my feelings of anger over having to be at the hospital so much and other details.  She shocked me. She said that she was angry because the whole time that she was 7 years old all she wanted was to be 8.  She figured that 8 was going to be vastly better than being 7 and that Faith being sick was really screwing that up!  What?!? When I asked her to clarify how 8 could possibly be better than 7, she confessed that she thought her sister would want to play with her more when she was 8. That's the age that you get out of a booster seat and truly become a big girl! But now, her big sister was sick and couldn't play regardless of if Kady was 8 or not.  Heart. Break. Ing.

Kady is human and she 8 AND she is a girl, so naturally there are times when it's evident that she is tired of our little world revolving around planet C. But, really, truly, those times are few and far between. That child's heart is so full of love for her sister, for her whole family! The days leading up to Faith's surgery, Faith was as cool as a cucumber, but Kady was a wreck. She sobbed every night for sister. Tears of worry that her sister would hurt, tears of sadness that her sister had to even go through it at all, and of course, tears of fear that her sister would lose too much blood and die. I had no idea where that one came from. We would hug her tightly and console, trying to convince her that Faith would be ok. That was hard considering that I wasn't completely convinced myself. The surgery was on a Wednesday, dance day for Kady. This child, who loves her dance class and looks forward to it every week, had to sit on the side and watch because her stomach was so knotted with worry that she couldn't dance. A couple weeks later, while in the hospital with Faith during a round of chemo, Kady's teacher texted me to share that Kady was sobbing after recess because she was missing Faith. The principal had to come take her on a little walk and reassure her that everything would be ok. I cannot say enough about the gratitude I feel for both of the girls' teachers and all of the staff at their school. The days just after our diagnosis, Kady's teacher would walk her out to the crosswalk to alleviate some of Kady's anxiety about who was picking her up. She didn't have to do that, I didn't ask her to, but she did it anyway. For weeks, she took extra time out of her day to take extra care of my baby.

Kady is so much better these days. On a typical day, she wakes up in a good mood, smiling and joking around, sometimes even declaring that she's happy. When I've asked her why or what she is happy about, she just shrugs her shoulders and says she's not sure why. She makes certain to kiss her sister before she heads off to school, then she's off. Like a little Kady tornado, she swoops out the door and then the air is still, a little less enegergized for sure. I know a big part of her healing was the great group of neighbor kids she rolls with every afternoon. I thank God everyday for them. I also think she has just gotten used to the new norm and feels comfortable with her roll. She did make a point to thank Chandler and I during our celebration over our last in-patient for never letting her feel less-important!

I could go on and on about all of the selfless, wonderful ways that Kady helps out. Or, I could share a multitude of cute "Kadyisms" including the way she adorably messes up big words, but the bottom line is this...she rounds our family out. To quote Jerry Maguire, she completes us. She is the light in our dark, the sweet in our sour, just the perfect amount of spunk, tenderness, humor, and compassion all rolled into the most perfectly disheveled little 3rd grader that ever came up and held your hand at just the right moment kind of kid every family needs, and we just love her to pieces❤

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<![CDATA[Whirlpool]]>Mon, 20 Jan 2014 00:27:02 GMThttp://www.fixfaithsfemur.com/blog/whirlpoolI started a blog about the holidays that has been sitting, unfinished, for weeks. I love the holidays. Seriously, I absolutely LOVE them. I mean I am one of those people that gets annoyingly into them and has every Christmas channel marked on the radio so that I can listen to Christmas music ALL the time. We host Christmas Caroling parties, we go see lights, the whole experience. Chandler and I have developed many traditions over the years that center around the holidays, but that's not what's on my mind. Lately, my mind has been a whirlpool of emotions, ideas, and future plans, or really future question marks floating around, sometimes spiraling around my head and my heart.

I am writing this at 3 in the morning from Faith's hospital room on the first day of our last in-patient chemo round. It's another milestone, really. A pretty huge one at that!  So long as we never need to say the "F" word again (fever, of course!), we will not be admitted back to the hospital until Faith is ready for her 2nd surgery. There is no future plan for that. It's all based on her growth.  So, Kady, who is 3 years younger, is as tall as her big sister and weighs more than her. Faith hates that.  She really hasn't grown at all throughout all of this. I'm sure she'll grow again, at least I hope so. We asked the surgeon to make her prosthetic purposely longer in hopes that she would, so she better grow soon. But the question is when and how much. We had a light bulb moment last week when someone mentioned that of course Faith isn't growing, her bones are too tired always trying to make blood cells after the chemo wipes them all out. Duh!!!  So, it could be a year or more before I come back to the 7th floor. Naturally, I am elated about that, but, secretly, I am a smidge sad, too.  Silly, if I think logically about it.  I mean, who, in their right mind, wants to come to the hospital, put their whole life on hold for several days, laundry, groceries, chores, and focus 100% of their energy on their child?!?  Well, when you put it that way....I will miss guiltlessly doing nothing, just hanging out watching movies, or playing games.  I will miss our friends that we have made here.  Jessica, the Child Life specialist, several of our favorite nurses, and who wouldn't miss the candy cart?!?  But, I won't miss leaving Kady behind, or sleeping on a couch, or worse yet, a recliner, with scratchy, chemically smelling sheets. I won't miss taking Faith on crutches with an IV pole in tow to the bathroom every 2-3 hours and I really won't miss purposefully poisoning our child to the point of her getting sick.

We are so different now than we were in August. I think back to those first few days a lot now, especially that it's a new year and we are hitting these milestones.  I replay scenes like the phone call that started with "I really hate to make these phone calls". If I remember too far into that day, I feel it all over again. My mom suggested when Faith was born that I mark important dates and milestones on the calendar that we keep in our kitchen. Chandler and I have done a good job with that.  It's nice to look back on the previous year as we prepare for the next year and read over the events that have occurred. Chandler, Kady, Faith and I sat at the kitchen table together on New Year's Day and read over the notes that we had made on the calendar. It's funny how we allowed 2013 to be relevant only from August 12th on when, in reality, so much more had happened. One of the many holiday traditions that we have is a New Year's Day party with traditional black eyed peas, collard greens, and fried chicken, for good luck and prosperity in the new year.  Some old friends of ours started it and we kept it going with a few twists of our own.  This year, after looking over that calendar, we added a ritual that I hope we maintain forever. Each of us wrote down our thoughts about the outgoing year, including lessons learned, joys, milestones, events, but mainly, the parts we wanted to let go of and be done with.  On another paper, we wrote down our hopes and goals for the new year. We gathered in a circle, my Oakland Street family, my immediate family, all the kids, and we shared the parts we wanted to share and we kept private the parts we didn't.  Then, we burned 2013 and we let it go. We literally lit those papers on fire and we just said good-bye to it all, the whole year, the good and, more importantly, the not so good.  We silently watched it all go up in flames. Then, we saved our jotted down hopes and dreams to be remembered and then burned next year. 
I can't say as I'll miss 2013 all that much, but I have learned a lot, grown a lot, and as I said earlier, changed A LOT. I have said this before and I'll say it again at the risk of offending, that I don't believe that God gave Faith bone cancer to teach her a lesson, or really US a lesson. He didn't give it to her because she is strong enough to handle it.  This whole thing, this whole "C" thing (I almost forgot, we can't say the word cancer per Faith), sometimes has me wondering what the heck it's all about, especially when I hear things like "God has a master plan" and "God chose Faith because....". I feel in my heart that this had to have just been a random fluke of nature. It just happened.  Maybe I played a role by something I ate or drank or a cigarette I smoked (for the record, I NEVER smoked pregnant, well, not once I knew I was pregnant). Maybe I didn't have anything at all to do with it. I wish I knew so that I could prevent it from happening again, but I'll never know and I have to accept that. However, this random situation that our little family has been dealt needs to be dealt with and that's what we are doing. In our eyes, there is not other choice than to deal with it as gracefully and as positively as possible. I know that there are plenty of people out there who are put in situations where they are given the choice to deal with it well or not so well and they chose to bury their heads in the sand and not really deal with it at all.  Dealing with it has taught us lessons and changed us. We have allowed it to. I used to say and really believed that "everything happens for a reason" and "it will all work out the way it's supposed to". But not anymore. I don't believe that or feel that in my heart. That has changed in me. It's kind of scary and kind of relieving all at the same time to think that life is all a bunch of random situations that fall in our lap and the only thing that's certain is that we have to choose how to handle them. That's not to say that I don't believe in God or God's powers. A friend of mine said something so simple yet so profound about God that it hit me hard and has stayed with me...God is love. She may have meant it differently, but I took it at face value. God is love. He is the power that is created from all of our love for people we know and love for people we don't even know. We all have love in our hearts, sadly, some more than others, but when we put it all together, it's pretty powerful! It's that power that helps us to deal with our situations. Who knows. That's just what I'm thinking now and how I feel now. It's liable to change, though...

I've changed as a mother. I used to yell a lot. Little things like messes and forgotten chores used to really make me crazy, but I just don't care about them like I used to. Truthfully, I simply don't have the energy to care about that the way I used to (except for a couple of days each month). I spend more time with my girls. Kady likes to cuddle at night. She is on the top bunk and asks every night if I'll come up to the top and lay with her for a bit. I used to say no more often than I would say yes. I really don't know why I did that. I let being tired myself allow disappointment and sadness into Kady's dreams. I rarely say no now. I sometimes cut it short if I am pooped or it's late and she needs to go to bed, but I love my cuddle time and I look forward to it. I am less judgmental. Period. Everyone has a struggle and everyone deals with it differently. I don't judge because I don't want to be judged. I could go on and on about that, but the bottom line is that the old cliché about walking a mile in someone else's shoes rings so true now. But, I think the biggest change in me has come most recently and is most unexpected. I just feel more at peace, calmer. That's sort of counter-intuitive. With the 1000 different directions we go in trying to juggle the girls school, 2 jobs, Faith's appointments and hospitalizations, etc. I should feel frazzled, but I don't...as much. I feel busy, that's for sure. I often find myself wishing for more time and winning lottery numbers, but I if I'm running late then I'm late. I'll get there when I can. If the girls don't go to bed on time, then they will be tired tomorrow, but it's not the end of the world. If I don't manage to check off everything on my to do list, and I rarely do, I'll just add it to tomorrow's list.  I can't be perfect as much as I would like to be and I am more accepting of that. I like this new feeling in me. It's not always there. Occasionally, that frantic old feeling catches me, but it's less and less. I guess even that's a choice.
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In anticipation of Faith's hospitalization this weekend, we decided on an impromptu Thursday night family date. The four of us headed over to a 3:45 showing of the Disney movie Frozen. Not my first pick, or really even my 2nd, but both of the girls were anxious to see it so we acquiesced. It was cute! Olaf, the comedic snowman in the movie has had Faith and I laughing all weekend. "Oh look, I've been impaled!" I also liked it because the story centered around 2 sisters looking after each other and needing each others love to get through difficult times.  Well-timed, Disney, well-timed!  After the movie, we went out for dinner at a Teppanyaki  restaurant and enjoyed a fire-filled show and tried to catch shrimp bites in our mouths. It was a lovely evening that had us all in sync to head into the weekend. I do believe I will declare family date night more often. This little family of ours is the greatest gift we have been given in life and I want to appreciate it fully, all of it's perks and benefits. That is a huge lesson  learned since August. Time, while it's in your hands use it. Use it all up!

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This last weekend hospitalization is kind of a big deal for us.  We wanted to make
it fun and celebratory so Chandler kid-napped some of Faith's friends and
brought them up to her room on Saturday morning.  They came in wearing light-up cowboy hats and had Bosa donut holes to share with the nurses and enough ice cream bars to share with every family here in the Oncology ward. We played monopoly and Uno and had a beach ball fight in the room.  It was wonderful to see Faith laughing a true, hearty belly-laugh as we hit the ball back and forth, sometimes knocking stuff over! At one point a nurse came in for a routine matter. When we apologized for all of the noise, she waved us off and said they all enjoyed the sound of children laughing!

Now we are getting ready to say goodbye to the 7th floor, for now. We've said the biggest goodbye to cancer.  Faith's pathology report came back just in time for Christmas and it showed that the tumor that started it all has died! 100% dead that is! Hallelujah!  Even though it shows that the pre-surgical chemo killed it, we still have to follow protocol to ensure that it doesn't return. This evening, we will leave the 7th floor with no plans to return for chemo...EVER!  We will still have 5 out-patient chemo's left, but those are easy enough, comparatively speaking. Our hope is to be done by late April, early May with chemo and then begin intense physical therapy to re-teach Faith how to walk again. We meet with her surgeon next month and hope to get the ok to let her begin bearing weight on her left leg.  She is excited about the possibility of rolling over to sleep on her side. It's often the little things that end up being the big ones.  This goodbye will end on a good note with a special "Chemo song" that the entire nursing staff is rumored to perform for Faith. I can't wait!
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<![CDATA[Chapter 3 - The Recovery]]>Mon, 02 Dec 2013 04:27:47 GMThttp://www.fixfaithsfemur.com/blog/chapter-3-the-recoveryThe scariest part was over, but the hardest part was ahead of us. When we started, it was painful for Faith to walk, but the chemo made it comfortable. Now, we were going to change everything. She asked me a month or so ago if she was going to have to learn to walk all over again after all of this. At the time, my answer was, "you'll need some PT to strengthen your leg, but I don't think you'll ever forget how to walk."  During the days after her surgery, I wasn't so sure.

After surgery they moved Faith to the 7th floor, our home away from home. She was flat on her back when I Ieft her side Wednesday night, but she was talking and smiling. She was a groggy version of her old self. When I returned Thursday afternoon, she was sullen and grumpy. She was in pain. Her epidural was doing a marvelous job completely numbing her right leg, but her left leg, the leg we operated on, was only partially numb and it was hurting. Chandler and I, as usual, take turns staying at the hospital. We had both wanted to stay with her the first night, but we can't forget Kady. She needed one of us to be with her, to show her that she was equally important.  So, Chandler took the first night.  I thought it would be the easiest of all the nights. Faith should have been appropriately narked out and asleep, but it didn't play out that way. She spiked a fever in the middle of the night, 102.6, her blood pressure dropped, her heart rate was elevated, and her pulse-ox was low. The nurses came every 15 minutes to check her vitals, alarms went off throughout the night. She had eaten nothing since Tuesday night. I was at home and oblivious. Poor Chandler had to deal with it all.  

Thursday, early afternoon, when I finally got there,  the nurse and the physical therapist came in with concerned looks on their faces. Faith was too flat and she needed to sit up some. As they moved her bed, Faith's eyes filled with terror. "Ouch, ouch stop!" They looked at the gauge on the bed; we had made it to 10% and it was lunchtime. I was instructed to get her to 30% by dinner and get her to eat something. Chandler headed home. I looked at my sweet baby girl's face. The face I was used to seeing was replaced by this angry, unhappy face I'd really never seen before. Not even in the beginning. Not even on our worst chemo day. I knew, deep down in my heart, that it was temporary, but I couldn't help but wonder what had we done to our daughter and would she ever truly recover.  I did manage to finally get her up to 30%, but doing so made her sort of tip sideways in the bed. Any and every movement taxed her and elicited that same angry face I had witnessed before.  "Stop it" she hollered at me.  Requests to help her sit up straighter were met with a bitter stare that could be translated with any number of 4 letter words. She still hadn't eaten, so I ordered her food and then had to spoon feed her. I hadn't done that since she was an infant. Then, I made her brush her teeth and wash her face and armpits. Activities that made me feel productive and proactive, but made her even more sullen. Dagger eyes.  I guess I could have let it go, but there is something about a clean mouth and face that always makes me feel better and I was hoping that she was the same. Besides, what message would that send her if the basic hygienic tasks that I pester about at home, really more like obsess about, were suddenly unimportant?  Bottom line, I couldn't just sit by and do nothing. This was the only part I had any control over. My kid may feel like hell, but I will certainly try to not let her look like it!

Friday morning I got her to eat a little more. I breathed a little lighter. I met with her doctors,  including the pain team, and asked them what was the point of this epidural that was only partially working. Having the epidural required a catheter and didn't allow her move out of the bed. The nurses assured me that bed sores only happen to unhealthy, older people or those who have been in bed a really long time. Still, I don't recall the last time I was in bed over 24 hours without so much as turning over and I was really beginning to get concerned.  They assured me that having a partially working epidural was still better than no epidural at all, but they supplemented with Morphine. Chandler had picked Kady up for lunch that day and brought her to the hospital to see her sister.  Usually, Faith tries to put on a happy face, but she was making no effort. She was snappy and irritable and generally unhappy.  Understandable. My heart broke for her, but after being dumped on by her for most of the day, I was ready to go home.  It was my night to be with Kady, so rain or no rain, we left. At least the weather was more holiday-like. I finally agreed to put Christmas music on in the car. Kady and I sang along as we crawled home (Phoenix people have no idea how to drive in rain, so even at 6:30, it was bumper to bumper on the freeway).  An hour later we arrived home. I opened a bottle of red, Kady got some hot chocolate and we chilled. It was a lovely evening and we, unexpectedly, got to visit with some friends and neighbors.  That was just the recharge I needed to get ready for what Saturday had in store.

Kady insisted on coming with me on Saturday. She had many opportunities to do something more fun, and I wish she had taken one of them because she didn't need to see her sister on what would be one  of our hardest days.  When we arrived, Faith's epidural had been turned off. The nurses were having trouble taking it out, so they had to call the pain doc. They were waiting to take the catheter out until the epidural was out and until the bed-side commode arrived. The waiting was creating a fair amount of anxiety in Faith. Funny how she fretted and protested the idea of an epidural in the first place and now was fretting about losing it! Both tubes were finally removed and we put Faith in clean clothes for the first time since Wednesday.  She had friends coming and we wanted to be ready.  Their visit was a nice distraction.  Faith read magazines with her girlfriends. Chandler and I shared beers we had snuck in with our friends. Adults and kids used the window crayons we had been given by the hospital to decorate Faith's window and we all roared when someone secretly TP'd the bathroom!  But then, Faith had the urge to use the commode.  That's it, party's over. Our friends graciously left us to our task.

I don't think much could have prepared us for the first time we got her out of bed. By Saturday, after lying essentially motionless for 2 and a half days and  after receiving a prosthetic hip and femur replacement, moving Faith was the most nerve-wracking experience I have ever had. The physical therapist had been by the day before to make Faith sit up on the side of the bed, but she wasn't here now.  I didn't want to cause her any more pain, but that seemed inevitable. Also, I was afraid that we would damage her new hip.  There were so many "hip precautions" in place. She shouldn't turn her foot inward, she shouldn't allow her left leg to cross her midline, and she shouldn't bend her body more than 90 degrees (imagine sitting down on the toilet and you are past 90 degrees). So many things to consider and this is our first time moving her more than by just sitting the bed up!  So, we took it one step at a time. Chandler got her to sit up and began turning her body toward the side of the bed. Slowly,  very slowly. She tried to help scoot herself closer to the edge. Panic was written all over her face, mine too, I'm sure.  Now, to bend her legs so they dangled over the side.  I had watched the PT do this, but that was yesterday, with the epidural in. Now the tears had begun.  Faith was snapping at her dad and I to stop, take is slow, go easy, but we needed to keep going. She was mean and, I guess, rightfully so. Finally, Chandler wrapped her arms around his neck and the two of them worked together to pick Faith up off of the bed, turn her and then set her down on the commode. Faith had cried so hard after all of that her face looked like she had just come in from a rainstorm. She calmed down a bit and we waited and waited for something to happen. Having had that catheter in for so long made it a little challenging to "go" the first time.  We tried the tricks we could think of to help inspire her like running water from the faucet and putting Faith's hand in a cup of warm water, but to no avail. After sitting on that commode for over 20 minutes, Faith's leg began to spasm, so we gave up,  put her back in bed and got her a valium.  It was Chandler's turn to go home now.  He got the first night filled with fevers and blood-pressure issues and I got the first night of moving Faith.  

The urge struck again and Faith and I began the 20 minute process to move her 3 feet over to the commode. Sit the bed up, inch the left leg over, scoot to the side of the bed, and then the worst  part, bend the legs so her feet touch the floor.  The anxiety was making the pain worse, so I started jabbering away at Faith about non-sense topics. As we talked about making
homemade cinnamon rolls Thanksgiving morning, she barely noticed that l had lowered her feet down to the floor. A little smile emerged from her as she realized that our talking had successfully distracted her from her discomfort.  We decided that we would jabber away every time. Our cinnamon rolls became elaborate, yummy, gooey, buttery gourmet goodness.  Faith and
I had gotten this process pretty well down, but it still involved me lifting her off the bed and moving her to the commode.  Not so easy on my back.  At least the valium had kicked in. I wished I'd had some valium!  By the time my family had stopped in to visit, Faith was officially drunk!  She was being silly and slurring her words a bit, AND, she was smiling. Even laughing! It was such a relief.  

Sunday morning, the physical therapist, Katie, came in. We told her about our process and she said that it was time for Faith to get herself up out bed without her parents lifting her.  Katie showed us how to do it without any nasty protests from Faith.  At least my daughter remembered her manners when a stranger was involved!  Katie continued and got Faith into her wheelchair and then had her wheel herself out into the hallway.  She was smiling! That Sunday morning some Phoenix Firefighters had come to play baseball with the kids in the hallway. Faith had heard all of the commotion and now she could go see for herself.  The hallway was filled with firefighters, patients and their parents, doctors and nurses.  It was the first time Faith had gotten up and moved around since Wednesday, over 3 days ago, and I was overcome with emotion. I stood in that busy hallway and  bawled.  A doctor came up to ask if I was ok.  Awkward!
That was enough for one day.  We headed back into the room and got Faith settled.  It was Sunday and it was my night to go home.  After yesterday's drama, Kady had decided to stay with friends. I picked her up, swooped in on some neighbors dinner and then Kady and I went home to crash. I think we were both sound asleep before 9pm.  I had to work late Monday and Chandler was waiting for me at the hospital.  Aunt Wendi had flew in from Missouri for Thanksgiving and was hanging out with Chandler and Faith.  They texted me the best picture yet.  Faith downstairs in the hospital cafeteria eating.  Smiling!  She was getting better every day with lightening speed. 

When I got to the hospital Monday night, I could tell that she was ready to go home.  I started asking nurses to help get us out of there.  We weren't supposed to go home until Wednesday, but Faith had met all of the requirements for discharge. No fever for 24 hours, no IV pain medication, moving around on her own, going to the bathroom with both respects on her own, and eating and drinking.  Check, check, check, check, and check!  Done!  Get us out of here. Tuesday morning, I got up and showered right away. No need to dilly-dally, we needed to be ready for the green light. The surgeon came in at 7am and gave his blessing, then the general physician.  We were just waiting on the oncologist. They would all evaluate Faith, then discuss and decide, but all indicators pointed to an early home-coming.  Problem. Faith's blood draw was showing a dramatic drop in red blood cells.  What?!? They were having trouble with her port earlier. Sometimes these ports develop scar tissue that allows fluid to flow into her body, but when the flow is reversed, the scar tissue gets sucked into the port inhibiting blood to be drawn out.  They would redraw her blood.  Same issue with the port and the nurse can only get a fractional sample. Now, it's lunch time and we are still waiting on blood counts. This time they came back worse than before. I was trying to stay calm and be logical about this. Faith looks good, she feels ok, it's, therefore, unlikely that anything other than faulty blood samples is going on here.  I told the nurses that we were done with trying the port. Access her veins the old fashioned way.  Faith won't be happy, but at least we will know what's going on. We had to wait for a nurse to come who can draw blood directly from a vein.  Eventually, we had a whole slew of people in the room, 3 extra nurses, our nurse, and a doctor.  We were all trying to figure this out. They got a good sample from Faith's hand and send it off.  Results usually come within 15 minutes so we waited.  Every time the door opened we practically gave ourselves whiplash to see who it was! Finally, 30 minutes later, a different nurse came in to inform us that our nurse was sick and had left early.  She scrambled to get our results, which were completely normal, and gave us our discharge papers. You would have thought the building was on fire how fast we were moving! It had only been six days in the hospital, but it felt like 6 weeks.  

Looking back at how scared I was to about the surgery, and how hard those first few days had been seems unreal to me now. It was hard and it was scary and hell, it was and still is a big deal.  But it's over.  We'll have more surgeries, but I know they will be easier. Just like it's easier taking any road trip the 2nd time. We'll know where the speed traps are, what the terrain looks like, what to pack, and where the best rest stops are.  Hopefully, there won't be any unexpected construction, but if there is, we'll just change the station and go with it.  

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