Fix Faith's Femur
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Another Success

9/29/2013

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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. 
PictureFaith and Madi!
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.  

PictureGilbert Fire Department
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!

PictureThe final table
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.


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Kady, Ryan, Katherine and Faith October 2009
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On-line Auction

9/27/2013

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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.
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Anyone can read the blog...

9/25/2013

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...even Faith! I got a text this morning from Chandler that Faith read the blog and wanted to know if he felt the same way that I did about her never pitching again. DE-FLATE-ED! Whoosh! There goes the air from my lungs and the blood from my face. I am a big proponent for being honest with our kids...to a point. Where do babies come from, are you Santa Clause...sure, let's go get a latte and have a chat, BUT...mom, do you believe in me, do you believe that I will walk the same way after this and have the same abilities...well, honesty is gray in that area. How could I be so stupid? is my initial reaction. Then I take a breath, the color returns and I reason with myself. It's a good thing that I am at work and not home to panic and handle it poorly. I ask Chandler if she is ok. I am picturing her an emotional mess right now. He has told her that it will take a lot of hard work, but that if she really wanted to pitch again, we would help her. Prince Charming, that man! Well done! She has moved on, of course. I'm sure she barely missed a beat. I hope so, at least.  
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Appropriately timed, today was the day we had planned for Dallas Escobido, ASU's prime softball pitcher, to come and meet Faith at our home. Personally, I wouldn't have known Dallas from the next college senior, but Faith has a whole library of her photos and stats on the iPad  and has been a big Dallas fan for several years now. So, her 5th grade teacher's husband, who is friends with Dallas's coach, put us in touch with her. I was impressed that Dallas was so agreeable to come out to Chandler from Tempe, given her busy schedule and considering that she is a well-known (just not to me) college athlete. I have to admit that I wasn't convinced that this would be all Faith was hoping it would be, or that she would even show up.  

Faith wanted her friends, who are also softball players, mostly pitchers, to come along. She invited her 4 best friends and their siblings, as well as, Jalapeño Maddie and her family. I continue to be blessed with an employer and co-workers who get that sometimes you just gotta go, so I left work early to host this little party. I was starting to get excited.  This is gonna be awesome!!! Jaime and I pick up all of the kids and attempt to get their hands washed and the front room ready with kids, snacks, and seating when Tatum squeals, "she's here, she's here"!  She's early. A mad stampede of adolescence to the front door. Poor Dallas never knew what hit her! I push my way through the mass of little girls and give Dallas a big hug. She came! Exhale, she came. Half of the battle is over. Now what? The girls aren't quite sure what to do. Dallas was a little early, so we didn't have time to give instructions or advice to girls, but they did great. They all found a place to sit, got their snacks and then sat quietly, too quietly at first! Awkward!  It was a slow start. I am guessing that the girls felt nervous and unsure of how to proceed, but Dallas was so warm and talkative that they began to relax and clearly enjoy themselves. It was nice to have this group setting of young ladies! She shared with them how nervous she gets when she is pitching in front of a big crowd and how many hours a day she practices. She told them about her military dad who worked her to the point of tears, tears she only shared with her mother because she didn't want her dad to see. Dallas admitted that she didn't get to go to very many sleepovers due to her hectic practice and game schedule. She illustrated all of the hard work and sacrifices she's made to be the best at what she does.  Sounds like a real downer, but it wasn't.  It was clear that she loved it and that she still does!  Dallas shared with them that even on her worst day, she still enters the field in a good mood, resolute to keep her bad day to herself. Her stories and advice were all very genuine, heart-felt and uplifting. 

This meeting was supposed to be for the girls, but I realized that I needed it to. It was so enjoyable to talk to her. She was so easy going and fun! It couldn't have been timed better, too. I was really feeling badly that Faith read my words of doubt that I had never spoken out loud to her.  Perhaps those words had left her feeling a little uncertain about her future, too, but if she was she forgot all about it. At least for the moment. I hope that Faith will remember what Dallas shared with her about hard work and determination. She will need it in her back pocket to pull out when she feels like giving up. I will need it, too!

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The Almost Weekend!

9/23/2013

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Faith and I traveled this long hallway again tonight. It's the hallway that connects the ER (they call it ED here) in the old building to the elevator up to the 7th floor in the new building.  Sunday night. We almost made it. Actually, we knew this morning that we would be here. She woke up with a stomach ache. Her temp was 100.1. Normally, before August 12 normally, I would have told her to shake it off, given he some Tylenol and gone on with my day. 

We did go on with our day, just in a different direction. Chandler ran to the pool store to address the green tint in the pool and I skipped my run and made a grocery list. We didn't know how much time we would have. We don't have to call the hospital until the fever is 100.4 two times in an hour, so we figured there was at a least an hour. I was grumpy, though, and that's not good. Pissed is really more accurate. But, Faith was fine, Chandler was fine, Kady was making a blanket fort in the front room that she and the dog were bonding in. Chandler, who knows me better than I know myself most times, offered to go with me to the store.  He had me laughing before we even backed out.  It was a date! I will take a date in any form that it comes, DC Steakhouse or Fry's! I joked, only half-way joking to be honest, that we should have put a little wine in some travel mugs to really make it official ;)


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We had most of the weekend, though, and we made the most of it! Friday was the school dance and Faith wanted to go! I have been really trying to keep her connected to the school, to her friends and the community.  She WILL beat this and go back to school, so I don't want her to feel like an outsider when that day comes.  But up until this point, she has been very hesitant to come for anything more than lunch with her sister in the quad. I was thrilled, but nervous, too. What if the kids don't accept her and instead ignore her or stare, point, and make secret conversations behind her back?!? Faith was adamant about taking her crutches rather than her wheelchair. This is one of the little ways she roars! I was nervous about that, too. Nervous that she might get her hurt in the crowd of kids or tire herself out. But, it worked out great! The dance wasn't super busy and the kids welcomed her with open arms. They were excited to see her! Whew! Exhale! Victory!

Friday night was the night of the BIG sleepover.  We were sticking to the plan. The girls would have our room to so that Faith could get to the restroom without stepping over a sleeping body and they could stay up and watch movies and chit chat.  She was so excited. Truthfully, so was I! Excited for her to get a little taste of normalcy and recapture the best parts of being 11.  Right or wrong, when we were pregnant with both girls, that was our biggest wish...not for the smartest or the prettiest, but for a normal child. One who would blend in and have friends.  One who would BELONG. I think the biggest thing that gets me about all of this is how NOT normal we are now and how all of things that she did and we did to be a part of this community have been taken away or postponed.  Sorry, back on track...so, the sleepover went really well! The girls all seemed to have a great time staying up late, making rainbow loom bracelets, talking, and watching a movie. Another exhale AND a big victory...Faith took her hat off while her girlfriends were there! I was stunned and thrilled. I knew that I had to play it cool, but I wanted to grab her and jump up and down telling her how proud and excited I was. I was so proud of her friends for accepting her nearly hairless head, too. I don't think that can be easy for them, either. Honestly, I don't know that I would be that confident. How many adult women would trust their friends enough to literally let their hair down and sit, exposed, with nothing to hide under?!? Since then, she has left her hat off more and more, even on the way to the ED last night! Thata girl!  On a side note, the pictures that I post of her without her hat on have been mostly candid shots. She has no idea I am taking them or posting them. Well, who am I kidding, she is a smart girl, so she probably does know, she is just polite enough to keep it to herself!

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Saturday, we went to watch our team play, the team Faith would have been on, the Bullmoose Panthers.  I would be lying if I said it was easy for me to go. It was one of the hardest things I have had to do yet. Damn it! That was supposed to be HER out on that mound. I know that is a childish, immature way to think, but this blog isn't about being politically correct and sugar coating. I LOVED watching Faith pitch, to the point that I wouldn't really even speak to people when she was out there on the mound. It hurts me to the core to think that she will never pitch again. I am trying to be a positive person. I know that miracles exist and happen every day, but I also have to be realistic. Faith found her thing and pushed and pushed at her dad and I until we believed the way she did and now, it's gone. Screw that!!!!! I know people keep telling me that everything happens for a reason, and they just may be right, but I can't see it now. All I know is that I am mad for Faith because she is too stinkin' nice to be mad for herself.
So, we are sitting at this game to support our team and our friends, whom I am very impressed and proud of. Madi, Faith's BFF has blossomed as a pitcher. She was really good and I did enjoy watching her! So was Sydney, her other bestie! We are also there to support the Jalapeño's...the opposing team.  2 of our friends are on that team, AND, their pitcher, Maddie, a Bullmoose patient,  has graciously decided to help Faith by having people pledge money for her every strike out. They will help Maddie to "Strike out Faith's Cancer". Wow! This 11 year old girl doesn't even know my daughter. She just realizes that she is a fellow pitcher, a fellow 11 year old girl up against the fight of her life and she is pitching in, pardon the pun:) and people are helping her! Human kindness is overflowing...

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I am holding strong, hanging with MY girlfriends, watching the game,  when Ken tells me that the
league is selling ribbons in Faith's name and that every dollar that is raised,
the league will match. Done! I am losing it. I can't keep it in anymore this swell
of emotion. I feel angry that Faith is watching from a wheelchair
on my side of the fence, I feel proud of my friend's kids
for doing so well, I feel gratitude for Jalapeño Maddie and now I feel l can't
keep it in anymore. Thank God for sunglasses and thank God for my bestie who
seems to get it and reaches out to hug me just in time! 


We are lucky to have these strangers rally around to help and even more lucky to have our "village" wrap around even closer! Thank you God!

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The sunny side of the road!

9/20/2013

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Amen to that! All things are manageable with the right beverage in hand ;) Now that my rant is done and I've caught up on a little sleep I have my perspective back.

This past weekend wasn't the best, but it wasn't the worst either. Faith didn't get sick! She ate, she gained weight, she got out of bed every day, and for the first time throughout this process, she asked for visitors! Hallelujah! And, of course, my little nut smiled through it all.

There was plenty to smile about! Chandler and I had been given a gift certificate to the DC Steakhouse, our favorite restaurant, when this whole thing began (thanks Sabrina & Mike!). We decided to use it Thursday night to cheer us up after our big letdown the night before. We purposefully ordered too much so that we would have some yummy leftovers to eat at the hospital on Friday night, then we left our doggy bag at DC. Shit! Oh we'll, moving on.





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Jeff and Faith

Friday morning, Faith and I got to the clinic early with Bosa donut holes for the entire team. The part-time nurse, Patty met us in the waiting room and explained that she and Sharon, the full-time nurse were fighting over who was going to get to work with Faith. Cool!!! That's my girl.

Sharon brings us back to an exam room, the doc comes and goes, one of my patients parents who works there pops her head in to say hi :) Sharon is in and out. It's practically a party! I enjoy the lighthearted, casual nature and Faith likes it, too. Actually, she loves going to clinic. But, I was rendered speechless as I looked up to see our favorite waiter, Jeff, from the DC Steakhouse enter our room toting our white, styrofoam to-go container. "If you wanted me to come visit, all you had to do was ask! You didn't need to leave your steak on the table." I feel like bugs bunny when his jaw hits the floor and his eyes bug out. Wow! "Is it ok that I'm here? I can wait outside." Ok?!? Yeah, it's ok! That is the most selfless, kindhearted, surprise I've had in...well, at least a week (prior to August 12th I would have said EVER). Amazing. Not only did Jeff wrap up our food, take it home, then get up early, brave the traffic, park in the wrong spot and follow a hospital map alllllll the way through the hospital and then outside to the ambulatory building, BUT he stopped at some point to arrange a gift bag of candy, activity books, AND a new game we'd never played, Farkle! Like I said, speechless!


At the hospital, we enjoyed a "picnic" lunch from Duck and Decantur, an oldtime favorite of my mom's and mine. Amy and Dave have brought sandwiches, chips, a lifetime supply of pickles, and yummy desserts. All 4 of us played a Cranium game that had us laughing so hard that we nearly..well, you know!.Good times for sure!





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Saturday was another softball game. On my way from the hospital to the ball
field to drop off the bracelet display, which snack bar Louie graciously offered
to display, I stopped at work. I needed to print some pictures off. While I was
there I there I picked up a present that had been left by a Bullmoose patient
who used to play softball with Faith. Her grandma had crocheted some hats for Faith. She wrote a lovely note that included a comment about how she knew that Faith wished she could bring her chocolate lab, Saki, to the hospital, but obviously couldn't, so she crocheted her a little Saki!



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Aren't we smart?!?

9/16/2013

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After having been in the hospital 5 out of the last 6 weekends, Chandler and I decided to try to work the system so that we could have Faith home for a weekend. Selfish...maybe. Good intended for all 4 of us...YES!  We did the math and added it all up to equal good numbers that would even allow her to invite some friends to spend the night like we used to do. The 4 of us worked out all of the details over dinner one night last week.  Chandler and I would move into Faith's room for the night, since she only had a queen size bed which took up most of her bedroom, and allow Faith and her 3 "besties" to take our room.  That way Faith could sleep in a bed, be close to a bathroom and not have to step over anyone to get there.  Done! Easy enough!

Since we are getting better at asking for help, we enlisted Uncle Scott, who normally watches Faith on Wednesdays at our home, to take her to her clinical appointment. All he needed to do was get her to the appointment on time, they would draw her blood, get her "numbers", which we were sure would be fine (why wouldn't they be?!?) and then get her over to her assigned room and wait, and wait, and wait for chemo to start. I would go down on my lunch break to sign forms and then back for the evening to stay the night, not missing work. Chemo has NEVER started before 7pm, so why would today be any different?  Well, as the old adage goes...what a difference a day can make!!!
 
I usually take her on Thursdays, a full 2 weeks after her last chemo began. This was a whole day earlier, and she had that little cold that landed us in isolation the weekend prior. Poor Uncle Scott, who was already a bit sleep deprived and, I'm sure, a little wigged out about the role he was playing, had to call me to tell me that her platelets were low. 69, to be exact, and they are supposed to be 75 to allow chemo to be administered.  The doctor, whom we have never met as ours is on maternity leave (which baffles me how a pediatric oncologist can have the courage to have a baby knowing what she knows...squirrel...sorry!) tells my brother that we can force the admission and continue with chemo, but it will most likely set her back significantly next time since her body won't be able to recover as well from this one.  Hmmmm, tough parental moment. THIS was not part of the plan. THIS is really going to screw things up. THIS is not good.  Ok, think...what should I do! I start yelling at myself in my head about how stupid and selfish we were. Why did we send my brother?!? This isn't his responsibility. It should be us with her making these choices. STOP IT! I have to physically shake my head to revisit reality. OK, I am back.  I tell my brother to go with the doctors recommendation (even though in my head I am still saying 6 platelets short. Really? 6. I'm sure. Like that is REALLY going to make a difference). I wouldn't be able to forgive myself if I decided to push it and then she got really sick. 

So, we waited, and on Friday the 13th I took her back to the clinic to redraw her blood and check for an additional 6 platelets (I know it's not really just 6). I am a betting girl by nature, so my money was on those 6 and I was taking the over. My bag was packed and I was calculating that if they started by 7pm, we could still be home by Sunday night at bedtime. No harm no foul. Chandler and I would each take a night at the hospital and we would all be back under one roof in time for the week to begin anew. Right?!?

The clinical nurse couldn't get her port to return blood, again. This happened last week. So, after much deliberation, we convince Faith, AGAIN, to let the nurse stick her in her arm to get blood. Well, the nurse is struggling to get blood from there, too. So, the sample of Faith's blood that was ultimately used, after being compiled from multiple sources and viles had a little clot in it that rendered a platelet count of 74. 1 short of our goal. Not to worry, our nurse assured us that this was a false low number because of the clot and we would press on with chemo. Whew!!! What a relief, which is still so weird and unsettling to me the level of enthusiasm we have for essentially poisoning our daughter. 

We get Faith admitted to the hospital, which took longer that usual since a baby had spilled his sippy cup all over one of the admission computers totally shorting it out, thank you Friday the 13th! We make our way up to our room to have a pre-arranged fun lunch date with some friends.  I mention to the nurse that we are having trouble with the port and that we are supposed to be taking an x-ray first to determine the source of the repeated problems. She inspects the port and tests it out, declaring it slow, but usable.  Ok, fine, what do I know?!? I get her the chemo papers I've been instructed to give her, after I remembered that I had them, and assume we are moving forward.  My expectation is a start around 7pm. 8 o'clock comes and I page the nurse, who's just come on shift, to inquire as to the status of when we will commence the 3rd round. She is unsure since Faith's platelet count is not sufficient to begin chemo and no x-ray has been taken of her port. What?!? Are you %$*@!^$ kidding me? What have we been doing since noon today? No answer, crickets. The nurse cannot understand why the day shift didn't handle these issues, but we truly cannot start without some answers from the on-call doc. Apparently, false low counts or real low counts require a special, specific note from the oncologist giving permission to break protocol and we didn't have that. Great!  Oh, and Faith is still on isolation since the cold virus she tested positive for last week can linger for a month. Well, that's just great! NOT! We essentially toured the entire hospital while we were waiting, so I'm kinda thinkin' it's a little late, but rules are rules and my sassy, pissed off attitude isn't going to change protocol. At least this nurse, and now the charge nurse, are going to get to the bottom of it so we can get started and they do to the tune of 2:30am. Yep! That's when Faith finally started round 3.  We got to the clinic at 8:45am on Friday the 13th and began chemo at 2:30am on the 14th.  Well, it's a 48hour drip, so you do the math.  I sit here at my computer at home with half a family under my roof while the other half is 30+ miles away still "drippin" as Chandler likes to call it. 

Lesson learned. LESSON LEARED!!!  I got it.  Be polite, be nice, but be firm and be in charge.  We have had such wonderful experiences up until this weekend that I became complacent, more so than I usually am. But we are the ones who have to watch out for Faith. The nurses and doctors are human and have many children to look after. It was Friday. It was the 13th. BAD, bad combination, if you ask me. I should have insisted that the day nurse call down to confirm the need to dismiss of the port x-ray. I should have said, "hey, the platelet count is only 74, but her doc said to continue on". But, we don't know what we don't know, but now we know!

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Rainy Days

9/11/2013

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Rainy Days are such a gift here in the desert, especially when you are a family in isolation! The monotony of sunny days was broken with perfect timing. It gave me a reason to get Faith out of bed yesterday and over to the window. Her cold and low counts have her confined to her room. Every medical person who enters comes clad in a mask and paper gown to reduce the likelihood of spreading the cold to other patients.

Saturday morning was opening day for Faith's softball team. She is still on the team. Silly? She can't play. She can't even get to the bathroom without some sort of aid. How could she possibly belong on a softball team? But it's not silly and it's no mistake. Her team, made up of girls she's been longtime friends with and girls she has never met, wrote her number #4 on their arms. They pinned gold ribbons to their shirts and they posed with a poster- sized picture of Faith Saturday morning, their first game. Hopefully, soon, they will meet the girl in person who would have been one of their pitchers.

I took too long to post this blog. I am not going to change it or update it except to say that since Saturday, our daughter has returned home...again. I wonder what these homecomings mean to her? They are my sun and moon. The highlight of my week? Depends on the week, I guess. This rainy week it was. Except for Wednesday. And that, my friends, is another chapter ;)

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Feeling Normal

9/5/2013

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Today is the first day in almost a month that I feel normal, or at least what normal used to be for us, with some minor adjustments.  We had a clinical appointment to check Faith's levels (translation, how's her immune system).  They were what we expected...low :( That means that Faith is very susceptible to infection. This is what happened 2 weeks ago.  We had a clinic appointment, her counts were low but she was feeling good so we let her have friends over, they swam, we went out to dinner, then whamo! Fever! Hospital. 48 hours minimum. Shit! What?!? 72 hours now 'cause the fever tried to sneek another peek. 

That's the past, we are in the now.  But, the now is low counts and sniffles = dreading the inevitable trip back to the hospital. I don't know if I can stomach it again. Who am I kidding, of course I can, I have to, we have to.  Poor Faith, Chandler and I are hovering like new parents touching her face, kissing her forehead, "how do you feel? You Ok".  She feels like she has a cold, puny, blah, but no fever.  So, I decide to exhale.  Have a glass of wine and just breathe. 
Wednesdays used to be pitching practice. Chandler would take both girls which meant an hour alone for me after work to cook our meal, sip some wine, decompress, and listened to Sting. Well, hell, why not?!?  I declare it reverse night (the girls bathe while dinner cooks, then we eat later).  Chandler has head out to say hi to a friend and pick up softball stuff so I pretend for a bit that it's Wednesday again, even though it's Thursday, and I pour another glass of wine and cook.  I leave the music off this time so I can hear if they need me upstairs, a minor adjustment really, and I pretend.  I think I am smiling a little even.  That feels good and I note that I should do this more often.  Chandler comes home. He must notice the uplifted mood because he swings me around in front of the open fridge and plants one on me. A good long kiss that has gotten the kids attention.  Ahhh, the good old days, like the ones last month before "Faith got sick".

As I snuggled her tonight at bedtime she had a request. "Mom, can we stop saying THAT word? Can we just say 'when Faith got sick'? You can even say the 'C' word, but just don't say cancer".  Sure thing, baby. That's a reasonable request.  I think I may slip from time to time, but I'll try.  Whatever works to feel normal!

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Guest book

9/3/2013

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Bake Sale

9/2/2013

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Sleepy Faith getting a blood transfusion.

As I sit here in this quiet hospital room watching my nearly bald 11 year old sleep the day away while someone else's blood is being pumped into her body, I find myself resisting the urge to feel sorry about this whole big mess!

Instead, I am flipping through photos of yesterday's bake sale and reliving the days events...

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I was at the hospital to visit with Faith before the Bake Sale began. As I approached Sanborn, I noticed the first sign "Please Help my Sister. She really needs it! Bake Sale Today". Kady..that little stinker! I haven't even gotten out of the car and already I am emotional. Truthfully, I fought back tears the entire drive from PCH to Chandler, so not surprising.

As I get out of my car and approach the crowd, the first person who approaches me is a total stranger. She shakes my hand. She is crying. She places something round and smooth in my palm and proceeds to tell me that her 28 year old niece died from cancer and left 2 wonderful little boys. She can't explain why, but she had a strong connection to us and had to come a long way to wish us well. We hug, both sobbing now, and then she promptly leaves. In my hand is a clear acrylic rock with a guardian angel it. The angel will look over us now.

There are people everywhere, some I know, some I don't know. It's awesome in the truest sense of the word...AWEsome! I try to say hello to everyone I know and introduce myself to those I don't. I had feared that it would be awkward to be there watching people overpay for baked goods and lemonade all to help me, to help Faith, to help us all. I am a textbook middle child. I do for myself, fly under the radar, a one-man band. But, I can't be that way anymore. We need help! We need it financially, physically, and especially emotionally. It turns out that it wasn't awkward at all. It was uplifting, all of these people that I've nodded at in the grocery store, or virtually "liked" from my phone are here to help. People I've shared meals and holidays with, people whose teeth I've worked on, my 8 year old friend's mom, my neighbors, Chandler's manager...they are all here! They will hold us up and I am ever so humble and thankful for that.

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The fire department came and let the kids climb all around the ambulance and truck. The news came and interviewed Chandler, Kady, the Funicello boys and I. Kady got emotional. The boys shaved their heads! Gross and cool all at the same time. What a selfless way for men, who tend not to express emotion, to show they care. I was touched.

At the end, a tall man approached Cindi looking for me. He had a check and a note. Apparently, he had just come all the way from I-17 to bring us a well-wish and some money. He said he had seen Faith's story on the news and felt that he "should do the right thing". The check was for $100 and he was a total stranger! Wow!

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$6000! That's approximately how much money was raised at the bake sale which was the brainchild of Jack and Sam Funicello! Money, our spirits, and a renewed confidence in human kindness. Thank you to the Funicello's and all of the family, friends and neighbors who helped to make the boys vision a reality. Thank you to everyone who took time out of their holiday weekend to come out, brave the heat, and Stand for Faith!

http://animoto.com/play/YVoJgTOLo8KsUcKvfvFEJw?fb_action_ids=509576669116799&fb_action_types=animoto%3Acreate&fb_source=other_multiline&action_object_map=%5B632374623463462%5D&action_type_map=%5B%22animoto%3Acreate%22%5D&action_ref_map=%5B%5D

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The Funicello's
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