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Chapter 2 - The Surgery

11/23/2013

4 Comments

 
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.
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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! 

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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!



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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!

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4 Comments

Pray with us!

11/19/2013

1 Comment

 
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!
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Upcoming events

11/15/2013

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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!
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Here we go!

11/10/2013

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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.
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