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!