A week ago Thursday, I took Faith to the clinic to check her levels. She'd been on lock-down the Tuesday and Wednesday before. The last lock-down, well, the last strict lock-down! Chandler and I agreed that after the surgery we would relax a bit and see if things had changed. Hemoglobin was low, so we transfused. Platelets were low, too, but not transfusably low. At least not at that time. We were instructed to go home, do the platelet dance and return Tuesday morning to check levels one more time before our scheduled Wednesday afternoon surgery.

Faith's platelets had been at 40. They needed to be at 100. That's a lot of platelets for tired bones to produce. I had to work Tuesday morning, so Chandler took her and I went to work, trying to focus on my job while trying to limit my text checks to 2 times per minute! I had a sinking feeling this wasn't going to work out. My phone finally whistled at me! Chandler! I closed my eyes, said a quick prayer and looked. 52. No! Crap. Deflated. I had been told on Thursday that her counts had to be un-transfused, so 52, in my eyes, was an instant reschedule to the Wednesday before Thanksgiving. As I was mentally rearranging things Chandler called to say that the plan was to transfuse platelets and to keep the surgery. Apparently, the docs were pretty confident we would still be a go, but we would do one more recheck first thing Weds morning to confirm. We were going forward. It looked like this was going to happen and now I couldn't breathe. Instantly, my chest and stomach got so tight. Painfully tight.  If I hadn't experienced a panic attack before, I would have been tempted to call for help, but I knew it was nothing a couple of deep breaths and a glass of wine wouldn't cure, breathe now, wine later of course! Chandler and I had been hoping to have a group prayer at the house Tuesday night. We decided to continue with the plan.

I got home from work, the atmosphere was light-hearted, relaxed, almost fun. So much so that Grandma Shirley was rapping at the dinner table!  Exhale. 7:30 approached and we moved out front. It was like a scene from a movie. People quietly pulling up in cars, walking down the sidewalk. They were coming!  Hugs were exchanged, candles handed out. Every time we thought we could begin, another family would approach. I loved how we lit a few candles with a Bic, but had the rest lit from the flame of a neighbor, passing the flame down the line. It was time to begin and, as if by magic, the entire group fell silent and listened to the words of my neighbor's dad, a pastor, followed by Jay, Chandler's boss. Prayers for our daughter and prayers for us. I felt better, surprisingly, very at peace. It was exactly what we needed and just how I had hoped it would be! I will be forever grateful to all who came to stand for Faith and protect her with their prayers.

As expected, I didn't sleep much that night. I never said it out loud, but the biggest question wasn't will she walk again. It was will she live. I kept telling myself that this is crazy, I didn't fret this much over a tonsillectomy, but this was different. What if...to many what if's. I was terrified and that fear kept wrenching my chest, making it hard to breath, hard to smile. How could we possibly go on without her? That's why it was so amazing when the sun came up and illuminated hundreds of hand-decorated hearts in the front yard. It was the most beautiful thing, breathtaking really. To those who played a role, and I know who some of you are - busted - I love you and I thank you, truly forever! 

We had to be to the clinic at 8am for our re-check. If the numbers weren't good, we would make them good with another transfusion, so there was a chance that this was it, she might not be coming home for awhile. We loaded the car up just in case. I didn't realize it, but Chandler had been working on a cd of songs special to him for Faith to listen to on her drive to surgery. Since he is self-proclaimed iTunes illiterate, I was stunned when he presented Faith with a note and a cd and instructions for me to have tissues handy and drive slower than usual so that Faith could enjoy the entire cd. That man never ceases to amaze me. He loves his family like no man ever has and he has a hidden sensitive side that, when revealed is, well, it's just beautiful! He's also a total a-hole because it took every fiber of my being to not drive off the road in a sobbing, wet mess! Especially when Carrie Underwood's "Mama's Song" came on. Squirrel...I was recently at a wedding and couldn't control my emotions as I watched Diane and her dad dance to the country song "I saw her first" (or whatever it's called). Both of those songs have me weepy regardless of the circumstances. I don't particularly like that about myself. Back on track. Our visit to the clinic was a brief one. Levels were better than yesterday. Game on!

We headed home since the surgery wasn't until 3:30 and it was only 9:30. We knew it was going to be a long day with the surgery looming ahead and an empty belly and dry mouth, so we arranged to have Faith's homebound teacher, Mrs. Law come. That worked out perfectly! Faith kept her mind busy and even learned some Ancient Egypt facts she shared with us at the hospital.

Although she'll never admit it, when Mrs. Law left and I began gathering our things, her entire demeanor changed and the stall tactics began. Shoes went on slowly, another pet of the dogs head, "come on, Faith, we gotta go." "Hang ooooon, mom," she whined. I was scared, too. I didn't want to go, but we can't prolong the inevitable forever. I couldn't listen to that CD again. Thankfully, Faith didn't ask. So, we drove as fast as I usually drive, got there a smidge early, got checked in and up to our pre-op room. No turning back now.

The nurse came in to announce that we had visitors in the waiting room. Since we were the last surgery of the day, they were going to allow more than 2 people back with Faith. Uncle Scott, Aunt Kelly, and, surprise...Ken! Cool! Another knock on the door, more visitors, Grandma Shirley and Granddaddy. Lastly, Grandma Judy completed our circle. In true Moore fashion, we turned pre-op into a party! It was perfect. We made jokes, Faith taught us about Ancient Egypt, and we all tried hard not to think about what was going to happen next. The look on the doctors face when he came into this tiny room filled with people was priceless! We cleared the room after hugs and kisses and well-wishes. I was impressed that there were no visible tears. Dr. Seidel explained that the surgery would take between 2 to 4 hours and not to be concerned if it took a littler longer. Her nurse took my phone number and promised to call with updates and then told us it was time to go. Our brave little girl was still smiling, looking slightly annoyed as I snuck in a few more kisses and I love you's, and then was wheeled toward the operating room. Away from us. We could here her jabbering away at the nurse and the nurse laughing at whatever it was that she said. That's our girl!!!

Chandler put his arm around me as we walked away from the pre-op area and turned the corner to make the long walk down the hall. As soon we turned that corner, he put his arms fully around me and I lost it. Thankfully, my husband knows when to just hold me and not say a word.  This was one of those times. I had a good, red-eye, runny-nose bawl, composed myself and walked into the waiting room. That's usually the worst part, sitting, waiting, fretting. But we had our party out there. Kelly brought snacks into the waiting room, completely disregarding the "no food" sign!  She had some beverages for us in the car.  I love that girl!  We followed her out, had just a little nip and then made our way back.  Time went by so quickly.  My college girlfriends stopped by, followed by Freddy, then Jay.  I hadn't eaten all day to be supportive of Faith and I was starving.  When the nurse called me earlier with an update, she indicated that I wouldn't hear from her again until 6pm, so we headed downstairs to grab a bite to eat. Imagine our surprise when the phone call came in at 5:30 that the doctor would meet us shortly in the post-op consult room to review the surgery, which by the way, was a success.  We had literally taken 3 bites of our food.  We must of looked like a bunch of ding-dongs running down the hallway with our food half-packaged and half-eaten!

So, the surgery was a huge success, according to the doctor. We didn't get to see Faith until nearly 7pm that night. Her little swollen face was still smiling up at us after all that she had been through.  Dr. Seidel reported that he only had to take 11cm of her bone. She would have lost 14 if we were to use an adjustable prosthetic.  She will require future surgeries to add the plate to her pelvic bone, creating a metal on metal hip relationship and to add segments to keep up with the growth of her right leg. Chandler asked what the difference was between a hip replacement and what Faith had.  The answer is that a hip replacement only involves the ball of the hip, not removing any of the femur. What Faith had done is considered the most extensive orthopedic procedure there is! Hell, I didn't know that. Probably a good thing!

Please come to pray, wish, and hope with us tonight at 7:40pm at our home at 1429 E. Oakland St. Chandler 85225 for Faith's upcoming surgery. We will gather on the front lawn, light candles (which we have), and pray.  Faith's levels are a little low, but her docs feel confident that they will be ok for a 3pm surgery Wednesday afternoon. If you cannot make it, we completely understand!

Faith's story will be featured on the TV show Health2Fit, which airs this Saturday morning at 11am on AZTV-7 or Cox channel 13.  If you miss it tomorrow, you can go to the Heath2Fit website and see it there!
http://www.health2fit.com/2013/11/chandler-girl-passing-hope-kids-battling-cancer/
Thank you to Brandy Aguilar for your interest in her story and your patience in filming the story. Even after all this time, I find it very hard to have a conversation about our cancer without getting emotional. Sometimes the ice cream Sunday works, and sometimes it doesn't! We had to take several breaks throughout the filming so that I could catch my breath.

The group prayer is still scheduled for Tuesday, November 19th, so long as Faith's surgery is still on the 20th.  She had a clinical appointment yesterday. Her red blood count was low, so she had her 4th transfusion.  Her platelets were low, too, but not low enough to transfuse for. They were at 40. They need to be at 100, naturally, without transfusion, for the surgery to proceed on Wednesday. If everyone could do a little Platelet dance this weekend, we would really appreciate it!  Faith's levels will be rechecked Tuesday morning, early afternoon.  As soon as I hear that we are a go for surgery, I will send up the signals, give out the address to let you know about the prayer.  Please, tentatively plan to be in Chandler, Tuesday night, November 19th at 7pm for a 30 minute prayer, wish, hug, session.  That will mean so much to us!

Well, with the scans complete, we were ready to meet with the surgeon. I was a nervous wreck leading up to that day. Someone would be ask me how I felt about it and the answer was, and still is, I feel everything about it. Excited, nervous, anxious, happy, sad, scared, and, honestly, angry.

Squirrel...We finished the scans Friday and by Monday Faith's oncologist had called to tell us that the results were in and they were great. The cancer seemed to be dead! Everyone was so joyful about that "good news". Chandler and I lay in bed that night and I listened to him excitedly declare his happiness at the news. Another victory...right?!?  Well, for some reason, I couldn't get happy. I was still pissed that we are even having these discussions. This is so real and so dream-like all at the same time. I admitted to him that I am angry that Faith has cancer and that she has to have half of her thigh bone hacked out (dramatic, yes, but that's how I feel) and I can't seem to let that anger go to allow me to feel happy. He has accepted it. Good for him. Thank God one of us has. l think, maybe, my silly brain reasons that by being happy that the scans showed all of the cancer is gone that it makes it real, means I have accepted that she even has it.  Means it's not a dream I may one day wake up from.  Dumb!  I'm trying.

Since that night I have tried to consider that this is just the sad chapter in our story that allows for the happy ending. You can't have a happy ending if there was never any sad, right?  I mean, isn't that the recipe for any good story, the lead-up, the struggle, the resolution, and the textbook happy ending? I have always imagined life with Chandler in our "golden years" sitting in backyard in my favorite Adirondack chairs recalling our daughters' weddings, or excited about the birth of our upcoming grandchildren.  Now, I think, I hope,  more appropriately, that we will say something like "remember that year that Faith had cancer? Boy, that was something!", because that's all it will be.  A year to remember. A chapter in our story.  I am also finding that I feel like a real jerk feeling sorry that my kid has this treatable cancer with treatments that she tolerates well when there are kids who struggle for years with a disease that only comes back again and again.  I keep meeting families at the clinic and the hospital whose children are 3 time survivors, or kids who get so sick that they need feeding tubes.  Smiley Faith is painting the pretty picture of cancer.  It could be so much worse. We could be faced with such a different chapter that doesn't have a happy ending. 

Back on track. So, we headed up to his office, ready to finally get all of the answers to all of our well-thought out questions.  The surgeon, one of only a handful of people in this country who apparently does this type of thing, casually enters the room.  He points to a diagram of a human leg and explains that the tumor is right about where the head of the femur turns downward into the straight part.  Effectively, the ball of the hip joint and a third of her thigh bone. The tumor is completely contained inside the bone and has not grown out to affect any of the muscle.  They will remove that entire part plus a little extra and replace it with a titanium prosthetic bone that will have a pressure locked attachment to her natural bone. This pressurized feature stimulates her natural bone to grow up into the prosthesis creating a biologically tight bond in about 2-3 months time.  They will go in from the side of her leg, rather than the back, which interrupts less of the muscle and such.  Faith will have an epidural for pain management, which will confine her to the bed for about the first day, requiring her to be catheterized. I am thrilled about this because I am terrified of getting her up to go to the bathroom with this new leg of hers. She, however, is mortified.  The surgery is said to take 2-4 hours and it is scheduled for November 20th in the afternoon. Faith will recover in the hospital 6-7 days post-op.  There is the possibility that she will not be able to have the surgery on the 20th if her immune system hasn't fully recovered from this last chemo round. We are keeping our thoughts positive that it will, because the alternative is the Wednesday before Thanksgiving.  Also, we just need to get this past us.  There isn't enough Oil of Olay in country to battle these new worry wrinkles I keep finding! 

So, the big question I had for the doctor, the biggest question of all...will she walk again? Or, really, more my concern, will she run, ride a bike, play sports?  Will she pitch again?  He was very confident that she WILL walk. She may have a slight limp, but it may not be detectable by the unknowing stranger. In his words, she will kick a soccer ball, but play soccer competitively, that's up to us.  She will begin moving around on it as soon as the epidural wears off.  She will be able to bear weight on it again after that biological bond is formed, but Faith will not begin physical therapy to walk without aid until the chemo treatments have been completed.  There is still 6-9 months of chemo following this surgery.  My other big concern was the possibility of amputation.  When I asked this I swear the surgeon was either offended that I would consider it or just found the notion so ridiculous, that he seemingly paused to find the appropriate response. "It's as close to 0.0% as you can get!"  Whew!  We had originally been told that the prosthesis would be adjustable without additional surgeries, but that is not the case. The tumor affects the growth plate of her femur.  It's not the biggest growth plate, thankfully, but it will become apparent that Faith's right leg is longer than her left.  To stave off surgery as long as possible, we will put wedges in her shoes, but the time will come when we return to the 4th floor and say another prayer.  We will just have to cross that bridge when we come to it, as it is too far down the road to even put on the map now.

Something that I have been planning since we started this process was to gather together with our family, friends, neighbors, and anyone who has been praying and wishing us well the night before Faith's surgery.  We will join together as a big group, light a candle, and pray for Faith.  I imagine how those prayers, wishes, and love will form a warm, protective bubble that will envelope her and stay with her throughout the surgery.  Sort of like that super-human strength people report having in a crisis situation.  She won't be strong enough to have her own super-human strength, so we will all give her a pinch of ours and that will help to keep her safe. Our gathering won't be a long one, it's not a party or a social encounter, just enough time to pray, hug, shed a tear or two and go on.  I will post more details when we get closer.

So, a week ago today, we completed round 5, a 3 day in-patient stint. It went very well! Faith felt really bad Saturday morning, but thankfully, Kady was there. Normally, we find friends or relatives for Kady to hang with, but she was insistent that she go be with Faith and thank God for that.  Kady climbed into bed with Faith and rubbed her back, cuddling her big sister while they watched a movie.  

Not long after, the candy cart showed up. This is one of the coolest, most amazing things they do for kids.  Several nice ladies appeared pulling a wagon that is filled with candy. Good candy! Not the cheap cast-off stuff that was expired or something, but big fun-dip packs, rock candy on a
stick with the little wooden ball on the end, lollipops with battery operated airplanes mounted on top, some disgusting mini toilet filled with powdered candy and a dum-dum plunger - barf, kit-kats, and other yummy chocolates. The women had clear party favor bags and told both of my girls, not just the sick one, to help themselves!  I was proud of my girls that they didn't go crazy. The ladies had to actually tell them to take more because they were so light on their load.  Before the candy crew left, they gave Faith a cool hat that looked like a monkey with arms hanging down.  Faith was smiling!  Kady was smiling!  I was smiling! 

But wait, it gets better.  Not long after the candy cart left, there was another knock on the door.  Gus! It was Gus, the 260lb Mastiff therapy dog that Faith has been dying to meet since the first day we were in the hospital.  Thankfully,  Kady was there, too,  to experience this first-hand.  Gus was huge, gross, beautiful and awesome, and he was our saving grace!  His owners, Sandy and Vin explained that they were supposed to be on the 8th  floor that day, but they knew how badly Faith wanted to meet Gus, so they snuck him over to her 7th floor room - snuck Gus, that's funny!  Bless their hearts!  I am indebted to them for doing that and for staying much longer than any other therapy dog ever has. They were gracious with their time and shared stories about Gus and their family.  They listened with interest as my girls told stories about Saki. I hope they know how their sacrifice every other Saturday means the world to us!  So that did it.  Faith was back to her old, smiley self.  The rest of the weekend, she asked me to play games and do art projects and she stayed out of bed until it was time to sleep. Victory!

Now that round 5 was completed, it was time to retake the images.  We needed x-rays and an MRI of her leg, a chest CT, and a PET scan. I called to schedule them as Faith was being admitted for chemo on Friday.  The scheduler was unable to organize them all for one day, so we arranged to do all but the MRI on Thursday at PCH in conjunction with her regular clinic appointment and then complete the MRI the following day at the PCH clinic in Mesa.  Fair enough. At least this would allow Faith to meet with Mrs. Law, her homebound teacher Friday morning.  Welllllll, we got to PCH early Thursday to check in for our imaging.  The admissions lady said, "I see you are here for an x-ray".  I clarified, with a slight trace of panic, "um, we are here for several images".  She investigated and declared that, indeed we were scheduled for several, but only the x-ray had been approved. What?!? Grrrrr!  We pressed on, as I was confident that our insurance would certainly not approve a year-long chemo treatment with a surgical limb salvage procedure and then deny the necessary films! 

We got back to the x-ray bay and were told that we were scheduled to take films of Faith's leg, including her knee, tibia and fibula.  I distinctly remember her ankle being mentioned.  WHOA, Whoa, whoa! I asked the tech to tell me again what they were taking x-rays of since the tumor is in her upper left thigh.  The tech got a supervisor who got on the phone to the oncologist and was overheard saying "mom thinks we are taking too many films".  I interrupted her.  Rude maybe, but I am not some wacko nut-job mom who thinks that I can control radiation levels in my kid...trust me, I have those parents at my office.  I simply wanted to make sure the correct films were gathered so that we didn't have to come back!  She nodded and smiled and came back with "the doctor says no tibia/fibula film, it's not necessary".  I have to give that supervisor props for taking the time to ask!  

Next, we make our way to the CT room, which shares a common area with the PET room.  Our tech was super nice and seemed very in control.  He joked and explained, I felt my anxiety ebb a little.  He brought Faith warm blankets because, holy cow,  is it cold in there, and told us why they asked her not to eat or drink.  Apparently, if you eat before the CT contrast is injected you might throw up! Reason enough for me. While he ran the tests, the PET tech found me and explained in a sing- songy voice that this image still hasn't received insurance approval.  What?!? Are you kidding me? Hmmm, well I can help. I offered to call the insurance myself and was told, by sing- songy girl that she "admires that I am an advocate for my child being that she is a mom, too, but unfortunately, that won't help the situation." Really?!?  Is there a parent here who isn't an advocate for their child?!? After the CT was complete,  the tech offered Faith some fruit snacks and explained to her how they can help distract from the bad taste the contrast can leave.  She declined in lieu of the gummy bears she previously smuggled in.  We were escorted to the waiting room where I began to work on insurance coverage for the PET scan.  Sing-songy walked by and blurted out "she's eating!".  I, on the phone, waved her off and jokingly said, "you didn't see anything!".  "Well, I see it in her mouth" she retorted.  Hmmm, I am really starting to dislike this chick.  Just as she busted Faith for eating, which she was told to do, I found out that the film had been approved.  Well hallelujah!  Now, her blood sugar had to be tested for the contraband sugar, which was deemed too high to proceed at 110.  Sing-songy and I exchange some words, no cursing or yelling, but she was a lot of attitude and I was pissed off mama bear. Thankfully, a wonderful, Angelic nurse, who witnessed the whole thing took the situation over, promised to arrange a PET scan and MRI the following day, in the same place with prior insurance authorization and even gave us lunch vouchers! No matter that Faith's schooling would need to be postponed to the following week.

Wrong mostly righted, but I was still fuming mad! I needed to switch gears and fast.  Faith and I lingered over lunch since we had a little time to kill, which was nice, and I softened in preparation for the Oreo guy.  So, several weeks ago, my dear friend, Amy was approached by someone who was a friend of a friend of a friend and saw Faith's picture on Facebook eating Oreo's on her first day of chemo (or night, I should say, it was 1am).  He worked for Nabisco and wanted to have a gift basket of Oreo's delivered to Faith by the mascot, a man in a Double Stuffed Oreo costume.  Cool? Yes! Creepy? A little...Facebook has really shown me the myriad of ways that we really are only 7 degrees from Kevin Bacon.  I am getting used to it, slowly, and hopefully closer to actually meeting Kevin!  Greg was touched by the smile on my daughter and, having 2 kids himself, wanted to help keep her smiling.  Noble, cool, love it!  Greg was clear to point out that he wanted no media involved, that he was purely doing it for her benefit.  Even cooler and very touching!  We arranged for him to meet us at the clinic, towards the end of her appointment, and to bring enough to put smiles on every kid there.  I truly didn't know what to expect, but cheesy Oreo costume and a nice bag of cookies came to mind.  Boy was I wrong!  So, so wrong!  Greg came with 3 of his peers, 1 of which was silently in the costume, a laundry basket overfilled with stuff for Faith, a life-size cardboard cutout of Niall, from the band One Direction (apparently Nabisco sponsored the 1D tour) and TONS and TONS of Nabisco items for all of the other kids and staff.  We were all in awe of it!  Call it good timing, call it good karma, but those Nabisco people had big, open hearts.  You could feel it that they were as happy to be there as we were to have them, which just made it all soooo much cooler!  Faith's silly doc took a picture trying to eat the life size cookie, Niall instantly gained "human" status as Faith's boyfriend and was asked how he was doing and posed for pictures.  I couldn't stop giggling from the fun-ness of it all.  Then, it got even better.  The Nabisco crew roamed the halls, us in tow, to find more kids.  I don't care what your age is, you see a ginormous Oreo walking the halls of an oncology clinic and you just smile! You do! 

Faith couldn't wait to get home and share her experience and the cookies with her friends.  We barely pulled in the garage and she was trying to open the car door to launch herself out and across the street.  We brought the huge basket inside and she and her sister and friends tore it apart like a Christmas present. They found a 1D sweatshirt and CD, Oreo t-shirt and hat, funny "got milk" cups, Sour Patch kids candy and gum, and cookies...lots and lots of cookies.  The house buzzed and I couldn't tell if it was excitement or sugar overload, but it felt good!  What a great way to end what started out as a bad day!  I texted Greg to relay my joy over the experience.  I hope they got as much out of it as I did!  I hope they know what a huge deal this was for us all.  We will NEVER forget the day the Oreo came to clinic!

On a funny side-note, throughout the planning process, Greg and I began texting.  So much easier!  I labeled him in my phone as Greg Nabisco since I didn't know his last name.  As we are driving to clinic, my phone chimed a text from him.  Faith, my co-pilot, looks down at my phone as gasps, "mom, it says Greg Nabisco! He's like the owner of the whole company! Oh my gosh!" I almost had to pull over!

I realized that I haven't posted in awhile thinking that not much had been going on. So, I sat and thought about what has transpired since the out-patient chemo. It's a little scary just how much has happened and how we must be getting used to this busy, 7 different direction life we currently live!

While Faith and I finished up the tail end of her 5 day chemo, Chandler and Kady went to Missouri to participate in the "Friends for Faith"  Golf Tournament hosted by my in-laws at the Cape Girardeau Country Club. It was a huge success on many levels. In less than a months time, Shirley and Wendi organized 80 golfers, a DJ, and around 100 auction and raffle items for a rainy, October morning tee off! Their friends (ours, too) generously donated food from Buffalo Wild Wings, a previous tournament supplied leftover beer, and, my personal favorite, Dan arranged for a donated margarita cart which was worked, in part, by Kady and her cousins...only in Missouri!!!!

Faith, being the oldest, has been on a couple of daddy-daughter trips solo, but this was Kady's first shot. Chandler is a great dad and does it up right with plenty of candy and soda on the flight and good times together. She was beaming when she got home. I noticed her recently revved up animated nature has calmed some since the trip, which is a blessing if you ask me! Chandler got a chance to reacquaint with Jay, his best high school buddy, and Peggy, Jay's girlfriend. It was nice for Chandler's family to get together and connect after all that's gone down.
 
Chandler and I decided that we were going to try something new to help keep us out of the hospital with the dreaded fever. We instituted "lockdown" days. The chemo typically knocks Faith's immunity to it's lowest point 10 days after the first day it's administered. We have been finding ourselves in the hospital with a fever as soon as day 9. The docs and nurses say it's normal and it could just be Faith's body fighting against the tumor, or battling some sort of bacteria or virus that was already present in her body, BUT, it could be a germ from another person. So, in an effort to try to gain some control and not use the "F" word ~ FEVER, we did not allow Faith to go anywhere or have any visitors Tuesday, Wednesday or Thursday of fall break.  I felt bad asking my mom and Scott to adhere to those guidelines, but I tried to make it easier by giving them a couple day lead so they could plan. I was impressed with how great they did! Tuesday, my mom baked cookies and made fried chicken with the girls. They both got some down time to play and read. Wednesday, Scott did crafty things with them like making playdough flowers and making plaster casts of their hands and feet. Fun, creative, relaxing. It was nice to come home to a rested household. 

Wednesday, DC Steakhouse Jeff and his family surprised us with filet and lobster tail dinner complete with baked potato with all the fixin's and Paletta Betty for dessert. Jeff had texted me that morning to ask if he could bring dinner by. Chandler was out of town and wouldn't be home til late, I was at work and Scott was with the girls. Turned out that it would be a good night.  I failed to mention to Jeff that we were on our experimental lockdown, and it turns out I should have. I met him in the driveway and watched as Jeff and his wife got out of the car...followed by their 3 kids. Oh no! I was so looking forward to meeting them, but I needed to uphold our plan. I took a deep breath and just blurted it out, "we're on day 10 and we are not having any visitors." I felt terrible! How can you look at someone whose forfeited their own family dinner time to bring you a hot, delicious meal and basically say, "hey, thanks, now hit the road"?!? They were so gracious and kind about it. They came in to say hello and meet Faith (Kady was at dance), we chatted for a few moments and they left. But not before Jeff gave Faith an autographed signed photo and t-shirt from his cousin who played on the US Olympic Softball team! Wow! The generosity!

Thursday we had our weekly clinic visit and it was determined that Faith needed a transfusion since her hemoglobin was low. That turned a quick visit into an all day event, literally. We got there around 9am and closed the place down at 5 that evening. Thankfully, Kady was playing at a friends house, which turned into a sleepover!  Another victory for Kady!  Chandler worked most of the day, so it was even more perfect that Tara had planned to bring dinner! I was so hesitant at first to have neighbors and friends bring us dinner, but man is it helpful!

Friday we chilled, but Saturday was a busy day at the Arby's Fundraiser. I really wasn't prepared for the scope of that. Saturday wasn't just a fundraiser.  It was a testament to the FX4 family that we are so proud to belong to.  I don't know what Chandler expected, but I was caught very off-guard when I walked up and saw our daughter's face on the front of everyone's t-shirt.  It
took my breath away! I choked back tears.  Wow!  I had no idea that  Faith's teacher, well the teacher that was supposed to be her 6th grade teacher at Sanborn, had asked Faith's peers to decorate yellow ribbons and had stopped  by earlier that day to hang them on the window. I wasn't prepared to hear that the entire team had stopped what they were doing when Faith walked into the building to applaud her. I'm speechless.  I didn't know that Beth's 11 year old son, Grayson, would be there, handsome as could be, and probably dying from the heat I'm sure, in a tux, dazzling everyone with a magic show and hustling Jay and Charlie, Chandler's bosses, for cash!  I didn't know that so many of the Arby's team would so selflessly give up their vacation time ~ their sanity time,  time to escape, recharge and unwind, to help us. That was too much!  That was so wonderful! I didn't expect Charlie's heartfelt speech or the enormous check (physical size and dollar amount) he presented.  I DID know it would be fun, but I didn't expect to see Robin dancing out on Broadway...literally. I had to jump in and join her for a minute!  It was the greatest of days and I went to sleep that night emotionally spent and recharged all at the same time. Chandler and I know that we are lucky to belong this family.  Some people these days wish for a job, any job. We are lucky that Chandler doesn't  just have any job, he belongs to community that supports him and his family and lifts us so far up when we are down. We hope that we can repay you all some day!

5 days of out-patient chemo under our belt and I feel victorious! We have regained some control.  Lots, actually. Each day began by checking in at the clinic around 9am. Faith would get weighed, have her vitals taken and then be pre-medicated, which usually took about an hour. Then then chemo could begin. The 5 day round consisted of 2 different medications, or poisons...I like to call an ace an ace, really! They each lasted about an hour, so we would be done and free to leave around noon, with exception of the first day. The first day was a doozy! We finished at 2pm and then waited until after 4 for the home health care lady to come and explain to me how to be a junior nurse.  I was feeling confident before she got there. No problem! I went to college! I have a 4 year degree...I got this! Weeeeellll, with each step I felt my shoulders sag a little and my bravado deflate some. There was so much stuff. I liken it again to a baby. When you leave the hospital with a new baby you have all of this stuff that you don't know what to do with. It turns out, all you really needed were some wet wipes, a diaper and an extra onesie.  So, the home health nurse is showing me a palm sized pump, 2 different infusion sets for "just in case", blue heparin, yellow heparin (heparin is an anti clotting drug to be injected into the port to keep it from clotting), about 25 pre-filled saline syringes, lots of tubing, sterile gloves, a brick of 9 volt batteries and those itty bitty little alcohol wipes. Oh, and bags, big bags of fluid. 

Once the chemo has finished running, our job is to switch the bag. It's actually really easy. You just pull the "spike" out of one bag and stick it into the other bag...in the middle of the night *yawn* and reset the pump. Got it.  Oh, and you have to change the battery at least once a day and the tubing too. Not to worry, they usually do that at the clinic for you, so long as your nice nurse is there. That, too, is not very hard once you do it by yourself for the first time.  It's also not a big deal to change the battery unless you are on the freeway and the damn thing starts beeping at you!  So continuous flow fluids are the same as drinking a soda every hour, 24 hours a day, meaning Faith has to pee every 2 hours, approximately. Makes sleeping a lot more like napping, but it's still way better at home than at the hospital. Keep in mind, each trip to the bathroom, or anywhere, at anytime requires an 11 year old to put on a pseudo-backpack and use either crutches or the wheelchair to get from point A to point B. This also generally requires the help of another human (we are working on training Saki!).  

Day 5 arrives! Our last day! Only 1 more night of changing bags, multiple potty trips, beeping batteries and weird backpacks. Chandler is out of town at the Cape Girardeau Golf Tournament and I am at work when the magical 9:30 Saturday morning cease fire is scheduled. Grandma and Aunt Kelly graciously bring Faith to my office so that I can expertly disconnect her and deactivate her port by removing the needle from her chest. They arrive. I wash my hands, put my shoulders back, say a quick prayer, and present my patient with a confident air! Hell, she doesn't need to know that I am scared shitless! Ok, I go back over the steps in my mind. First, turn off the pump - logical, check. Disconnect her port tube from the pump tube - not as easy as the nurse makes it look, but check. Got it. Wipe connector with teeny tiny alcohol wipe for 30 seconds. Check.  Flush port tube with 1 of the many saline syringes. Ok, I am doing this. Wait. Shit. The last push of saline had a big air bubble in it! Oh hell! I forgot to get the air out. Every sweat glad activates. I hold my breath and wait for her to keel over or something, but, seconds later she seems to have been unaffected. Whew! Lesson learned, thank you God! Ok! I am still looking confident. I reach for the 1 and only, very important, syringe of anti-port clotting, yellow heparin and remember to bleed the air out. I remove the cap and I push, but nothing comes out. I push harder, a little harder and POP! 2/3rds of the heparin is now on the sealing! What!  Are you frickin' kidding me! Holy Hell, that was the ONLY one they gave me. I ask, ok, I TELL my sister to go get my cell phone from the front desk and I push the only 2 remaining mililiter's of yellow heparin into my baby girls port. DE-FLATE-ED. I call the emergency line, explain my situation to the answering service and leave my phone with Grandma and Auntie while I tend to the orthodontic patient I am supposed to be working on. I finally return to the room where Faith is and  look at my sister with my breath held. She is smiling! It's ok. 2ml's is enough. Last step to freedom...remove the needle in her chest and deactivate Faith's port. That is surprisingly easy. It comes right out and, viola, we are done! I am Victorious! I am a junior nurse and I can do this! I did this! Time to celebrate, but I gotta get back to work 1st!

I know that you know that! Hell, I know it, too! BUT, sometimes I forget it. Sometimes, when I am at work, busy and focused or just doing my job and having fun, it hits me. Literally, figuratively, and emotionally, it hits me and it takes my breath away. I have to shake my head or gasp for air. I try to be discreet, and I think I usually succeed, but the other day at work, I had to just let out a few sobs, pray that no one walks in, and then gather myself and move on. I really don't want do this at work. I really don't want to do this anywhere. I do not like green eggs and ham!

You know what! My FAMILY has cancer! That's really what this should be called! Faith bears the primary burden, but her illness affects us all, deeply.  Everyday simple tasks take twice as long, minimally.  Longer when we are carrying around a backpack of continuous flow IV fluids. I  need to plan as though I have a baby again. Generally speaking, I can get  showered and out the door in 30 minutes. Honest! This morning, I allowed an hour  from the time I finished working out until I needed to be out the door and  throw in the promise of Starbucks if we can manage to leave early. Plenty, right?!? Wrong! I finished and said, ok Faith, let's go upstairs to get  ready. I will shower and you can take a bath. Washing first, lounging later. "Mom, I have to pee".  We'll do it  upstairs.  "It can't wait" (insert appropriate dancing, wiggling,  stressed face look).  Sigh, Ok. Let's go quickly and then head  upstairs. There's no quickly. Crutches, IV backpack, move the dog  then hobble back out.  We finally get upstairs, I get the water  started and begin to tell her to run to get her clothes.  She  stares at me. Ok, fine, I'll go get your clothes, then I will be right back  to help you into the tub.  We both finally emerge,  bathed, dressed, I braid her hair (what's left of it), and note  that we are at 40 minutes now, but we are still upstairs. I am killing my average, but we are still within the hour grace period.  I stand in  front of her as we meander down the stairs and head straight for the garage.  She is no help to me loading stuff up, so might as well load  her up. Now, here's where you should have had candid camera. The terms monkey and football come to mind *wink*. Faith is settled securely in the car, it's running and the radio is  blaring.  Ok, she's clearly happy!  At least I won't forget her (you think I'm joking)! I run into the house, glance around.to assess what items need to packed.  I grab my laptop bag and Faith's backpack and run into the garage.  Do you want water, Faith? Back inside, Faith's water cup, a handful of bracelets to give the nurses, the bag of fluids and tubing for this afternoon's switch to the backpack.  Oh yeah, fliers for the Arby's Benefit night. Garage. Back inside, my purse and the wheelchair.  Shit, I just forgot one more thing. I think I got it  all.  Garage. Where's the damn wheelchair?!? It's in the front flipping yard! How could I forget the break? How embarrassing! I look around as casually and cooly as I can and say a silent thank you to the heaven's that no one  was driving by that saw me as the responsible person! Maybe they will think it  was a family member who was helping out let the runaway wheelchair down the  drive. One can only hope! 
 
Finally, we are  backing out. I am 15 minutes past my scheduled departure time, which, in all  honesty, puts me still slightly early for our appointment. But I wanted to be EARLY, you get there early, you start early and, subsequently end early.  I wanted it to be smooth, and chill. Well, Faith is chill and  cool, as she has been sitting in the car without complaining for the  last 15 minutes.  "Mom, can we still get Starbucks on the way" Sure. Life is short, we'll make it, baby!

At least this week of Faith's out-patient chemo has been really good! It's been almost like nothing was wrong. Fall Break was perfectly timed. Breaks usually consist of shuffling kids here there and everywhere to try to manage work with kids at home. We would try to trade off, you know like you take my kids Monday, and I'll take your kid Thursday type of deal. Everyday was something new, but the four of us usually ended up at home to have dinner together.  That's how this week has been. Grandma took Faith Tuesday, Uncle Scott and Chandler took Wednesday, and I have today and tomorrow. We have had dinner together every night! Nice! Faith has tolerated the treatment well, too. No real side affects to report! Extra nice!

Yesterday morning started with a frenzied feel complete with a handful of heart-wrenching tears.  It was the day of the poker tournament and Chandler and I were finishing up the last minute details on the auction preparation. I had gone out to run the dog, only to find 1/4 mile down the road that he was limping. Hrmpf! We walked back home and found Faith red-faced and runny-nosed crying in her dad's arms. She had her heart set on spending the night at Madi's but WE were chickening out.  Chandler told Faith that Madi could stay here and, boom, waterworks! This kid doesn't cry easily, not with needle sticks, port accessing, nothing. But take away her chance at freedom with her friend....I get it, Chandler gets it, we are just scared.  So, Chandler hugged me and whispered in my ear, "maybe we need to give a little and trust", I nod and we turn around to deliver the good news. Faith CAN spend the night at her friends. Her tear-streaked, puffy, red face beams. Not with victory, like when kids dupe their parents into making a different decision, but with pure joy!  She is thrilled and I am holding my breath a little until Sunday when she returns. I trust my friends with my kid, undoubtedly, but, well, you just never know. 

So we load my car, my sister's car, and some even in brother's car and head to the bar to set up. There is so much! Wow! How did all of this happen?!? We have been organizing auctions for years for the girls school and never, ever, have we been able to get stuff like this. It's a true testament to the power of friendship and human kindness. The day may have started out rocky, but it's recovered beautifully! We have successfully set up the auction without so much as a dirty look or an under-the-breath mutter from anyone, and we are ready to go.  I truly thought we had too much help at first. Boy, was I wrong! Cristi comes in "I am here to report for duty!" Um, ok. I don't know what you should do. My college friend Heather "tell me what to do, I'll do anything!" Oh, hell, I got this, like I said before, I am a self-sufficient women...right?!? Ok, wrong.  Thank God for those two ladies! Cristi has taken over registration and handling payments for 50/50 raffle, bracelets, poker and pies, while Heather slides into position to monitor the on-line vs. live auction going on. What was I thinking?!? There is no way that I could handle the task of managing a busy auction while enjoying the guests that have come to support us.  

It was a great turnout! I know Max was worried that he was light poker players, but it worked out to be a blessing. Friends and members of our community flooded the bar. The poor waitresses never saw it coming!  Every time I looked up I saw someone new, some familiar faces, some faces I haven't seen in years, and some I never would have expected! Kenny came from Prescott, James and Bethany shocked us by coming down from Flagstaff, Jessica and Becky I haven't seen in years, literally, years! Our old friend Robin and her whole family surprised us, too. My heart was warmed when a couple we had "fallen out of friendship" with not only showed up, but played poker, too! Thank you! So many of our friends and neighbors continued to support us just by coming (I pray they know how much they mean to me).  Even the Gilbert fire department came and graciously showed the kids (and Rich and I) around the fire truck. I don't know what it is about a fire truck that is so thrilling, but they get me every time and make me feel like a kid again!  It was a reunion and it was fun!

It was perfectly timed, too.  Yesterday was the day that we were supposed to leave on our annual trip to Rocky Point, our family getaway. No cell phones, no computer, no work, just fun on the beach eating mangos off a stick, buying cheap, almost free "ewelery" from the locals and breathing in the salty, humid ocean air. When I close my eyes during a quiet moment, I can almost smell it!  I think Chandler and I would have been pretty down this weekend had we not been so busy preparing for the auction and tournament.

We have several friends going down during the break who have thoughtfully asked what they can bring back for us since we can't go. It's true that there are things in Rocky Point that we look forward to buying, but that's not the best part of the trip. It's the feel and smell of it and the little nuances and traditions we've picked up in the 7 or so years we've been going.  Friday night, the night we usually would be packing up, we sat at dinner with the girls and reminisced about past. Kady's first favorite memory is the way her dad always drives around the round about several times just before we arrive at our resort, windows down, music blaring, celebratory soda in hand! They both like getting their hair braided and buying virgin strawberry daiquiris from the swim-up bar. Chandler likes how we always try to sneak into the resort next door and use their slide and how we would play Ping-Pong at The Reef and have lunch at Moonshots above the fish market (I think Faith has a crush on the bartender there!). We all will miss homemade happy hour on the beach at sunset, swimming in the ocean, and looking for dolphins and sand dollars.  Last year, Faith found the biggest most perfect sand dollar I have ever seen. I swore that it must have been purchased at the gift shop, but she had her dad with her to attest to it's authenticity. To this day she beams with pride when she talks about it.  I will miss the feeling of ease that comes over me when we open the condo door, see the ocean on the other side and breath in Mexico...the smell to me that is family, fun, and just ahhhh! all that we work so hard for during the rest of the year.

Several times Chandler's sister, Wendi, and her family would go with us. My 15 year old niece, Katherine, was recently assigned the task of writing her memoir. Her story was beautifully written and centered mostly around Faith's cancer. I selfishly never really considered how it was affecting the kids, any of the kids for that matter, other than my own, but it does affect them. It affects us all. Katherine's tale included some her memories of our trips to Mexico. I am going to close by including an excerpt from that. Thank you, Katherine for sharing it with me and allowing me to share it here! Thank you to Wendi and Dan for allowing your kids to skip school to come to Mexico and make memories with us!

We used to travel down to Rocky Point Mexico every year in October for a week.  Faith and Kady  would have school off but Ryan and I would skip school.  We would fly out to Arizona and then drive the long drive down to Rocky Point.  The cars would be loaded with food and supplies.  There was barely enough room for us!  Normally we would switch up the families that rode together. For example, instead of my mom, dad, Ryan and I riding together in the same car, My Uncle Chandler, my mom, Faith and I would ride down together.  I remember Faith and I used to cram all of our Barbies into the car and we would play Barbies or watch Barbie movies the entire way down there. 

One time on the road trip to Mexico, one of the cars got a flat tire in the middle of nowhere.  We put on the spare tire and stopped at the next stop to pay and get a new tire.  While some of the adults took care of the tire, the rest took us kids to a McDonald’s nearby.  Faith and I decided to have a race and we raced to the McDonald’s to see who could get there first.  Of
course, after the other kids saw what we were doing, they ran for McDonald’s too.  And the race was on. Legs trembling and
breath rattling, we reached McDonald’s and we just laughed because no one knew who won. We ate McDonald’s and
played games until the car was fixed and then we continued on to Mexico.

The place where we stayed was right on the beach in Mexico.  At night, when the tide was out, we would go out and collect sand crabs and seashells. Faith and I stayed together and every once in a while, she would turn to me with a big grin on her face saying excitedly, “I found one! I found one!”  I would help her get them into a bucket and we would continue along the
beach until we had a bucket full of seashells and crabs. On some nights, when the sky was especially clear, Faith, Kady, Ryan and  I would go down to the beach and would go stargazing. The sky was amazing and in those moments, we felt so small and were stunned by the beauty of it all.
.......
It really is crazy, how fast a life can change.  In less than two months Faith went from walking all over St. Louis to barely even being able to walk to the bathroom without help.  I love her so much.  She is such a brave girl and I am so proud of her.  I know that even though she has changed  in so many ways, she is also the same girl I went crab-hunting with under the stars in Mexico. In these moments, I feel so small and yet I am stunned by  the beauty of it all, and the strength that is family.

The poker tournament with auction is tomorrow from 1-4pm. We have had an overwhelming amount of extremely valuable and desirable donations, so we decided to go virtual! Visit on my Facebook page to bid without being present or come in person to 1st Round Draft to see all of the items up close an personal. If you would like to stay anonymous, text me your bids at (480)748-7801. Sometimes gifts need to stay anonymous! I get that! I will keep it up to date at least every 30 minutes.  Read the album description for details.

 https://www.facebook.com/becky.moore.31/media_set?set=a.10151711787033790.1073741827.759333789& Please share this with anyone you think would be interested in bidding on these items!

This is an additional link to the new page created for Fixfaithsfemur.  People who are not facebook users or friends of mine  should be able to be view items from this. https://www.facebook.com/media/set/?set=a.1419176318306042.1073741828.1419172191639788&

Thank you for supporting Faith in her fight against bone cancer.