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.
In true Kady fashion, half-way through the movie, she was bored and ready to begin the painting project we had brought along for the day. I knew that Faith felt bad, but I made her get up and paint with her sister. My attitude has always been to work through it. You can feel bad in bed or you can try to get up and work, you never know. At any rate, it couldn't hurt to try. So Faith begrudgingly got up and painted with her sister.
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!
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!
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!
RSS Feed