Tough Cookie

One Year Later

2010-10-30T08:52:00.000-07:00

Hi everyone!

What a strange feeling knowing that today marks one year since Sam passed away. As my mom knew this day was coming, she told one of her friends that “if she didn’t dread Halloween enough before, she sure is dreading it now,” to which her friend replied “you know that Sam would want you to pick apples, play in the leaves, and dress up like a witch… but you only get to be a witch for one day!” I know that Sam would indeed want us to be happy and enjoy the holiday by dressing up, going out, and eating too much candy. I have such good memories of the Halloweens Sam and I spent together. Since she was allergic to chocolate, Carisa, Tony and I would always sit around after trick-or-treating and trade her all of her chocolate for our Skittles and Starburst (boy did she get the raw end of the deal!) I also have such fun memories of her and I getting dressed up for Halloween 3 years ago, the day before she and I learned she had cancer. We were living together in college, and were hanging out at our apartment with some of our friends. We took pictures of us in our costumes for us to keep, and then separate ones that in Sam’s words, “would make our daddy proud of his little girls.” She didn’t have a worry in the world.

I hope that on this day, you are all able to remember the happy times you had with Sam, and recall what it is that you loved so much about her. I loved her laugh, and the way she always thought of everyone else before herself. I loved the way that it always only took 5 minutes after us getting in a fight for her to walk in my room and tell me she was bored of not talking to me, and asked if I wanted to play. I loved that she never cared what anyone else thought about her and she was never afraid to just be herself. I loved that I never had to worry about being hungry because she was always there to either eat fatty foods with me or cook me gourmet meals in her apron with a dishcloth draped across her shoulder while I did my sole job of setting the table. I loved that Sam was constantly teaching her family life lessons. Whether she was teaching Tony how to treat girls, Carisa how to conquer high school, me how to grow up and act my age, or my parents how to have a successful marriage, she was always helping everyone become a better person. Where she gained this maturity and knowledge, I’ll never know… maybe from our Nonnie. Whatever it is you loved about Sam, try to remember it today and let her live through you by going out, having a wonderful weekend, being happy, and loving everyone around you.

November is National Pancreatic Cancer Awareness Month. In honor of Sam, her passing, and this upcoming month of awareness, I will be making a donation to the fight against cancer.

As some of you know, I work as an independent beauty consultant for Mary Kay. The company is amazing and I’m absolutely loving everything about it. One of the nice things about owning your own business, is that you can decide for yourself what you do with your income. For the entire month of November, I will be giving a portion of all my sales to the Transplant Foundation. As you all know, this foundation is very close to the hearts of our family, as it is one of the main reasons Sam lived as long as she did. Especially with Christmas and gift shopping around the corner, I am hoping to be able to give a decent donation. Please feel free to check out our products, or just learn more about the company, on my website www.marykay.com/alexcipolla. Orders can be placed directly through my website, and my contact info is listed there as well.

Much love,

Alex

GTFA Softball Award

2010-10-10T08:05:00.000-07:00

This month as we are approaching the one year anniversary since Sammy’s death we have been thinking about her a lot. Then on October 7^th we were invited to attend the Glenview Titan’s Fastpitch Association’s annual meeting. Sam had played on the GTFA traveling softball team for 5 or 6 years. This past season every GTFA team in the league wore a special patch for Sammy on their uniform.

At the meeting Dolly, Tony and I weren’t surprised to see some of Sam’s old teammates and coaches from both her GTFA and high school playing years including Rick Jaegers, & Kay Sopocy.

What we weren’t expecting was the wonderful, yet very emotion tribute to Sam given by Kevin Christell. In Sam’s memory The Glenview Titan’s Fastpitch Association has started an annual award, the “Sammy Cipolla Award”. It is to be given to the girl who best exemplifies the attributes that made Sam not only a great softball player but also a great person.

Listed as their criteria for award:

A player who shows courage and calm inspiration by approaching seemingly challenging situations with confidence and ease.

A player who exhibits unique softball IQ.

A player who displays superior work ethic and passion for the game of softball.

A player who raises the morale and performance of the entire team through her contagious positive and enthusiastic nature.

A player who demonstrates true camaraderie by always supporting teammates and celebrating their triumphs.

The nominations for the first Sammy Cipolla award were;

From the 12 U teams Melissa Miller and Lisa Gebein. From the 14’s Alysa Strapko and the winner who played on the 18 and under team, Julia Williams

Congratulations to all the nominees and especially Julia Williams. We look forward to watching you play this coming spring for Glenbrook South.

This award means a lot to us especially because we do have so many great softball memories of Sam.

Thank you Kathleen and Kevin Christell, David May, the Morgans, and everyone involved at GTFA. It was so nice to hear these heartfelt words about Sam at a time when we selfishly needed it for ourselves. Also it was a great reminder to hear how Sam touched other people’s lives as well.

Chris

October 1st

2010-10-01T11:50:00.000-07:00

A year ago today, Sam was so happy that she made it to her transplant one year anniversary date. She was happy for her transplant team that she loved so much. With her new prognoses of “Acinar” cancer she knew there was no more anyone could do, it was just a matter of time. But the one year anniversary date was important to her because she knew how talented her team was and hard everyone worked to make that high risk surgery happen and be successful. They were successful, and it gave Sam an extra year of life. If the cancer didn’t turn out to be Acinar, I’m sure Sam would be blogging something about this today.

I know I haven’t been writing and keeping Sam's Blog going, but I can see from the counter that people still check it now and then. We will keep it going and hopefully have something to say or post now and then. In the mean time, if anyone wants to have something posted, sharing a Sam story, please feel free to send me an email at Indyhawk@aol.com and I'll get it posted.

Chris

Welcome to our Crib!

2010-02-26T19:17:00.000-08:00

Hi everyone!

I know it has been a while since we’ve posted anything. Our family has been doing well and doing everything we can to remember Sam. A tree has been planted in our backyard in honor of her. For those of you who live nearby, you may have noticed a small light that we put in her bedroom window, which is always on, to symbolize that her light is still shining here. I am currently working on a huge scrapbook project. It’s been fun going through pictures and letters from Sam going back many, many years.

Sam loved making videos (as you’ve witnessed on this blog!) A couple years ago, she started to make her own mock version of MTV Cribs, a show in which celebrities show off the ins and outs of their incredible homes/pools/cars, etc. We filmed it in about 20 different clips, but never put them together into a real movie. Carisa and I recently came back to this project and just finished putting the video together! I wish Sam could have seen the final product, and we are so excited to show it to all of you, to help you remember Sam and how funny and amazing she was!

Alex

Here is our version of MTV Cribs, starring Sam Cipolla and her fabulous crib.

Sam's Jr. High School basketball jersey retired 12-15-09

2009-12-16T09:15:00.000-08:00

Yesterday at Springman Middle School, on the basketball court at halftime between the Springman vs. Attea games, the school held a brief ceremony honoring Sammy. Sam’s eighth grade coach Alex Posner presided where he and Sam’s good friend and teammate Katie Klemke unveiled Sam’s framed #1 Springman Wildcat jersey. Her jersey and number are to be retired and hung in the lobby of the school.

During the two years Sam and Katie played for Springman, they compiled a record something like 35-1. Under coach Posner’s 8th grade team, they went undefeated.

Sam would have been so honored by this. Thank you District 34, Coach Posner, and everyone involved at Springman.

Below are the words spoken by Mr. Posner at the ceremony.

Today we are going to honor former Springman student and star basketball player Samantha Ann Cipolla... she was known to all of us as Sammy. Sammy was a member of the Springman family from 2000 to 2002. After that Sammy went on to become a star athlete at Glenbrook South High School. Then she attended Northern Illinois University. It was at Northern that Sammy was diagnosed with cancer. Over the two years following Sammy’s diagnosis, not only was her life profoundly changed, but the lives of many who followed her story were changed. We are not only honoring Sammy today for her contributions while here at Springman but more importantly because of what we learned from her during those two years of her battle with cancer. Sammy taught us to stand tough in the face of adversity. She taught us to appreciate things we might otherwise take for granted. She taught us an important message about love. She showed us how to be positive and use humor to get through tough times. Sammy’s message literally reached all the way around the world through her blog site, One Tough Cookie. We honor Sammy today, and thank her parents, Chris and Dolly, for sharing Sammy with us. Chris and Dolly, we would like you to accept this jersey with Sammy’s name and number she wore while playing at Springman. And, with your permission, we would like to display this jersey in Springman’s lobby, not only as a way of paying tribute to Sammy, but as a reminder of how precious life is and how wonderful Sammy’s message of hope and courage was.

Sam's Remembrance

2009-11-16T12:37:00.001-08:00

I have had many requests to post the remembrance I read at Sam's funeral, and am happy to share it. -Alex

Samantha Ann Cipolla

Sam once wrote “My life is nowhere near over. I’ve only lived 13 years of it, but from these 13 years I think I have something to say.” Now, 8 years later, I have to agree she had something to say for herself.

It seems almost pointless to stand up here and tell all of you what a wonderful person my sister was. I think it was clear to everyone she came in contact with, that she was an amazing woman whose attributes cannot justly be put into words.

Growing up, Sam always stood out. When the caterer tried giving Sam a hotdog along with all the other 4 year olds at a police picnic, Sam quickly stopped him and insisted on having an Italian sausage with green peppers and onions. She was the only girl on her football team, and baseball team, and sorry boys, but was better than most of you.

Her love of sports extended to the big leagues, and especially the Hawks. She wore her Jeremy Roenick hat constantly. She only took if off at the dinner table (by force, of course) and to shower. And yes, she even slept with it on.

As she grew older, it remained apparent how remarkable of a person she was. She wrote me once that even though it seems she’s getting older, and won’t need that older sister advice as much, she would still be stumped a lot. There were a couple times in high school that she called me and told me she was crabby or sad, or just needed that big sis advice, to which I told her to hop in the car and drive to NIU to spend the night with me. Mom and Dad, you thought she was down the street at Ness or Carly’s for a sleepover, but that’s beside the point. What Sam didn’t know was that in coming to me for whatever advice I could possibly give, she was actually the one teaching me a lesson. The way she handled situations and the maturity she showed, and even just her ability to reach out when she needed it, proved she never needed advice at all. She was wise beyond her years. As Bobby put it, she just got it. She could see the big picture and always knew what was important in life. She was very practical, and very reasonable.

After Sam got sick, her positive mentality and giving nature never changed. It was never about her. Sam made friends with everyone, and made them with ease. Not only did she become great friends with her doctors and especially nurses, but even members of the hospital cleaning staff loved Sam and joked with her all day long when she was around. Sam would say please and thank you to everyone, for everything. She would thank you not only for the big things, but would thank her nurses for taking her blood pressure, and her family for simply keeping her company.

Sam did her best to not let the cancer slow her down. Her friends meant so much to her and she worked very hard to spend so much time with them this past summer. She was beyond thrilled whenever her body gave her the energy to go out for a night and be with those she loved. While celebrating her friend’s birthday at a local establishment, Sam and I both ended up getting kicked out after some words were exchanged with the bartender. On our way out, Sam picked up her drink, and while staring at the bartender, chugged it, and slammed the empty glass on the table. That’s my girl. Now maybe we shouldn’t be proud of getting thrown out, but for that moment, Sam got to act like, and was treated like, not a cancer patient, but a normal 21 year old girl.

As Sam neared the end, she was not afraid to talk about her life after death. My mom recently told Sam that “it’s not too late to pray for a miracle,” to which Sam replied, “Mom, you’ve had a miracle for 21 years, don’t get greedy.” Sam strongly believed, and reminded us often, that even after she died, she will be here for us for as long as we need her to be. She told us that whether it be through dreams, memories, or things that surround us, she will be here. She worried more about those that loved her than she worried about herself. She said we had the hard part and all she wanted was for us to one day laugh to ourselves when remembering the goofy things she said or did... of which there are many. She told us that in times of need we could leave notes under our pillows, which might still be there in the morning, but she would have gotten the message. She also told my dad he could just ask her for help, but that people would think he was crazy if they heard him talking to a dead person.

Sam wrote that our parents will walk across fire for her if her Gatorade was on the other side and she was thirsty. Mom and Dad, she spoke constantly of your selflessness and the amazing, constant care you gave her. She truely believed you are the World’s best parents. Carisa, Sam always admired your passion, and how much you cared about the things you believe in, even if you believed in different things. Tony, Sam has always been so proud of you, and was sad she wouldn’t be able to see you grow up to be a well rounded gentleman who knew how to treat women right, but she knows that you will.

Sam was an allstar athlete, a comedian, an entertainer, a teammate, and a proud Italian.

She loved good cooking, a good jam session on guitar, and a good laugh.

She was just as stunning in a prom dress as she was gorgeous in a t-shirt and baseball hat. She had one dimple, and a heart of gold.

She was a fighter, a role model, a true inspiration, and she was tuff.

She was the younger version of her Nonnie, and a daughter to be proud of. She was more than a sister, she was a best friend... to many.

Sam was a gift to all that knew her, and she will be forever missed.

Dear Sam letter

2009-11-11T11:02:00.000-08:00

With permission I am posting Connie's letter which she tried to add as a comment. Chris

Dear Sam,
I know you said if someone wanted to talk to you they could write it down and leave it under their pillow and you would read it. But, I'm guessing that if I write to you on your blog you'll read it too! I miss not being able to check the blog to see what your latest happenings are. Whether a well described hospital procedure or just what book you were reading, I always wanted to know what you were doing. But, now your stories have stopped but as life would have it, ours continue. So I thought I would tell you a story about the few days we spent saying goodbye to you.

When I looked at the map and saw the location of the funeral home it was weird because I cannot count how many times I have driven by there over the years. And, now I had to enter through those very doors myself to see you Beautiful Sam.
Not wanting to miss a moment we arrived right at the beginning of your wake. I watched in amazement as the hours ticked by and your Mom, Dad, Alex, Carisa and Tony (Mr. Secretary that is!) stood in line to greet the hundreds of people who filed by. Honestly, I couldn't really tell who was comforting who because your parents stood long and tall at a time where they most likely wanted to crumble to the floor in a heap and just sob. Your friends all came too. They mingled around with this lost look and deep sadness on their faces trying their best to comfort each other. They went from picture board to picture board looking at all the photograph's that were taken throughout your life. By the way, I don't think it's possible for you to take a bad picture! You looked beautiful in all of them!

On Saturday we woke up to the most beautiful, sunny and oddly warm November day. We went to the church and waited the arrival of you and your family. I sat in the seat next to the isle anxiously waiting and from time to time nervously turning around like a little kid wanting to see what was going on in the back of the church. Finally I could see through the doors that you and your family had arrived. Then I turned around to face the front when suddenly as if out of know where this very soft but strong gentle breeze came whooshing up the isle. All the little reserved seating signs flittered up and down. I knew at that moment you had entered the church! No doubt a choir of angels sent ahead to clear the way!

You know, I haven't been to a lot of funerals in my life Sam, but I have been to a lot of masses! Never in my life have I ever seen a priest cry while speaking! I think in that moment Father Matt said it all! It went right to my heart and spoke to how much you touched everyone! Then Alex spoke. She spoke with the grace and poise of a young woman beyond her years in honor of you, her dear sister. And, Carisa too had the courage to get up in front of hundreds of people. She knows not of her own beauty and elegances. And then your dear friends, Trisha, Carly, Jenna and Vanessa. Loyal to the end and no doubt beyond.

At the end of the service everyone filed quietly out of the church and just stood around out in front like they wanted to hold on to the moment. Many of them hugged and comforted each other. Finally people started to go to their cars to line up for the procession to the cemetery. I don't think the people sitting at red lights were happy when your procession came by! It was sooo long! I'm not sure but I'd guess at least a mile worth of cars!

We finally arrived at the cemetery and when I got out of the car I heard something that seemed so out of place that it took me a minute to fully identify what it was...the sound of a wind-chime tingling softly in the wind. I looked around to try and find where it was located but I never did find it. And, when we stood by your side at your site I could no longer hear it. I don't know how things work in the world you now reside in but I wouldn't put it past you to make that chime tingle in the breeze at that moment to sooth our broken hearts.

Well, Sam I've probably gone on too long and I know that this is written not for you as much as it is for me. Our lives have been profoundly touched by you and now profoundly altered by your leaving. To say that we miss you is an understatement. Sometimes words really aren't enough to express what a heart holds. But, I want to thank you Sam for all the love. Thank you for showing all of us what true strength really looks like. And, thank you for letting us in on your very personal journey! A quote from the book The Profit says, "When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight."

As always, all my love to you Beautiful Sam and to Chris, Dolly,
Alex, Carisa and Tony.
xoxo, Connie

=

Thank You

2009-11-09T07:18:00.000-08:00

Thank you Father Matt, for flying in for us and the wonderful words you spoke. Thank you Colonial-Wojciechowski, the Glen Club and Precision Reproduction Inc. for your excellent service and professionalism. Thank you Megon McDonough for your beautiful voice, and especially our home base, OLPH, for your teachings, compassion and generosity.

To my best friend Marlo, thanks for all you did, your nonstop help, but mainly for being here for Dolly, as always, when she needed it most.

To all our well-wishers and everyone who attended, especially those from out of town or away at school, who made the long drive back or flew in, thank you so much.

I am sure Sam felt the strong outpouring of love, as we did, all weekend long.

Love,

Chris

Sammy earned her wings

2009-10-30T23:29:00.000-07:00

It is with extreme sadness to inform everyone that last night, Friday the 30^th at 1100pm after a heroic fight, Sammy’s two year long battle with pancreatic cancer ended. She died peacefully at home with her family at her side.

Visitation: Friday 3 to 9 PM at Colonial-Wojciechowski Funeral Home, 8025 W Golf Rd, Niles

Funeral Saturday, November 7th at 9:15 from the Funeral Home to OLPH Church at 1775 Grove street, Glenview. Mass 10:00 AM. Interment at All Saints Cemetery in Des Plaines.

In lieu of flowers, memorials may be made to:

"sr. Paulanne's Needy Family Fund" at OLPH, 1775 Grove St Glenview Il 60025 or

"Transplant Foundation, Inc." at 701 SW 27th Ave, Ste 705 Miami, FL 33135 Tx# 886-900-3172 www.transplantfoundation.org/donation.asp

Dr. Moon Visits!

2009-10-12T17:07:00.000-07:00

(click on a pic to enlarge it)
Hey everyone-

This weekend I had a super awesome visitor. I want to warn you now though, as I'm typing this I'm watching a hawks game and I'm not in the happiest mood about it. Also, I get to blame anger on the steroids I'm on. So yea!! Anyways- Dr. Moon who did many of my surgeries in Miami and basically turned me back to me in 6 months came and visited! He had some medical things to do in Chicago and we worked it out that he came and visited at the house! He is such a great guy I couldn't begin to explain. You can tell no even by knowing him that he's great just by the fact that you know a surgeon of mine came and visited me across the states! It was great to see him :) He is such a great person to talk to, and it was like an old friend was visiting, not somebody who has been elbows deep in my belly! That was maybe a bit much huh? ew, sorry. Anyways, the first night we had dinner that worked out great - a thank you to HPPD people once again, we had some Maggiano's brought to us that night, yummo! Perfect timing! The second night my parents brought Jang to Pizanos (which I personally am not the biggest fan of, I think the crust is oddly buttery), but he got to try some Chicago style pizza :) Here are a few pictures of the weekend while he was here. I asked him how to write something for my wall in Korean, and he came up with something pretty cool. The top part is my name, and under it is a phrase he says is kind of popular right now, slang really. It means you're cool; you're tough; etc.. so it seemed to fit just right :) I have one minor mistake on the writing, but you don't know that right? :) Thanks to Doc Moon for a great weekend! I also got to see 2 of my girlfriends this weekend which ALWAYS makes me happy. Spending time with people I love is all I can ask for.

Medically- oh yea, that's what this is for right?...... Medically ;) we drained some fluid at home for the first time today. My nurse came out and helped us, which I needed I was (and still am) super nervous that it could spread infection. Really its a risk just like the other lines I have, but I was just nervous that it could easily not be sterile. We seemed to do okay today, and I believe we will continue to do the same. Unfortunately when you're at home you can't really drain too much at a time, because there's a risk your blood pressure could drop fast and you're not in the best place if that happens and you're at home. In the outpatient place I did about 4 liters both times, but at home I can do 1. It still helps things, so we'll probably do this for a few days to help. I think thats all I can type for now, the game is giving me road finger rage. rarrr!!

Still- I always send lots and lots of love :)

Sammy

Another Day...... Another Day....

2009-10-08T03:02:00.000-07:00

Hey everyone... I hope that everyone had a good week and is almost ready for the weekend! As far as the medical stuff goes with my abdomen, I had an interesting day of ups and downs yesterday. We were originally supposed to have the procedure to drain my abdomen of fluid again, which is bittersweet. It's not the most fun thing in the world, but it feels so much better afterwards in regards to pain. It relieves pain in my back since so much weight is put on so quickly. I wasn't going to let the pain/pressure in the front and back get ANYWHERE near where it was last when I had to go in.

Oh boy.. that was bad. They had to drug me up quite a bit to get my pain to tolerable. But anyways, this time that I went in I found out there was a possibility of putting a catheter in my back/side to get rid of fluid in the pleural (I think thats right?) area. It's the area around your lungs but not IN them...This brought back memories of many pleural cathetars that were in for weeks and usually being pulled out just to be put back in in another spot, or side, or both. Anywho, I was NOT happy when I found out about the possible lung drainage that day. I knew it would come up at some point, we were thinking about a chest x-ray especially with the thought of pnemonia, but he just used his ultrasound that he used on my tummy to mark to also look in my lung area for fluid but didn't see any YAAAYYYYY!!!!!! This made me so happy I cannot even tell you. I wouldn't have them left in or anything, just drained and removed...but still I was scared.

Anyways, we emptied another 4 liters of fluid since last Wednesday (so 7 days) but this time the catheter was left in. It's entry point is on my right side, opposite of my ostomy. There is a tube running on the bottom part of that area in my belly, almost like a smiley face at the bottom (but you can't see the tube.) The tube is relatively small, and it looks like one of those hoses with all the holes in them. So whenever I feel that I need to empty it I will be able to do this at home, but have to be so careful and clean. Its another large risk of infection so I need to be careful. When its not in use there's about 6 inches or so of tube in a circle on top of a foam pad thing (definitely the medical lingo) and then we use a tegaderm (clean plastic sticky barrier we use for lots of things) to keep it down and sterile.

So that hopefully was enough medical stuff to make up for my last blog that was more "diary" entry as I call it. Today I actually have quite a visitor! Dr. Moon from Miami is going to be in town for a medical conference I think, so he's coming over for a while! This is exciting! It is a bit of bad timing though. I'm moving very slowly and in pain now from the procedure and I would have loved for him to see me moving about more freely, but hey whatcha gonna do? Also I'm usually using the oxygen most of the day now, but again, oh well! If it weren't for him this blog wouldn't be posted. Hope everyone has a good weekend, maybe I'll find something interesting for a post. It's a bit nippy outside but enjoy the outdoors before snow (ewwwwwwwww) while we can :) As always-

Lots of Love,

Sammy

P.S. soooomebody I know who maybe happens to be one of the greatest dad's in the world has quite a big birthday coming up. We're gonna have to break out the AARP cards, wheelchairs, maybe even lend my oxygen tanks over to someone on the 15th. ;) Love ya daddy

Woaw look how fast this one was! :)

2009-10-06T18:46:00.002-07:00

Hey everyone... I'm sitting here with 'Nebzie' my new nebulizer like the one I used to use when I was a kid. It's helping to open up my airway so I can breathe better with what seems to be a case of pneumonia. Hopefully it'll break stuff up in there so I can cough it up and get it OUT! (yummy, sorry) Here's a picture for immature friends like Ness who thinks the word Nebulizer makes me a dork. Anyways thought I'd write in this short one that tomorrow I'm going to get fluid drained again (before the pain reaches ANYTHING like it did last week), and the next day probably a more permanent catheter put in so I can drain the fluids at home when I want to. This will help with pain and other issues. That's all for now folks!

Lots of love,

Sammy

2009-10-06T18:46:00.001-07:00

Here it comes!!! Hope you have an hour to read!

2009-10-04T11:18:00.000-07:00

Hey everyone... sorry about all the delays, hopefully I didn't make anyone nervous in suspense. I know its been a while since I've written, so I'm gonna go back a bit, so I apologize if I'm repetitive in anything...

Alrighty well I'll start off with saying how great my support is.. as usual. I'm 'stuck' in my room most of the day... which actually doesn't bother me, don't worry! I just have a couple wires/tubes or what not, connected to me and different things, so I get all tangled up if I move around too fast and don't think about what I need to move and such. I've watched a lot of tv series now.. lets see... Lost (watched 1-4) thanks to Jennifer M. for sending that first one :) I was also recently hooked on 'Arrested Development' ..which I think may only have had 3 seasons? Anybody know? We don't see past season 3 on netflix so it may be all the way done, we're not sure. Of course I'm keeping up with the current 'House' on tv....love that! I tried out another.. Veronica Mars.. which I still may watch more of, not sure yet. I'm trying to transition over to reading more possibly instead of just watching these shows all day. Any good book suggestions are welcome. Tony and I are reading a book "together." It's a series I used to love when I was younger (no laughing) but its Animorphs. I'm trying to get him into it like I was :) We're both just reading it at the same time.. well not literally.. but both reading so we can talk about the book. I'm also reading a book from high school english which makes me feel dorky, but I really did enjoy it at the time so I figured why not again? It's Tortilla Curtain by TC Boyle.

Besides the books and movies I've had friends visiting constantly, even though some are already in school (some even all the way in CO- yes you trish :) They visit me and are nice enough to put up with my shows, usually food helps reel them in :) Just kidding, but really they are so great to see all the time it makes a big difference for me. My room is kind of the new family room, people hang out in here, we brought some chairs in, and there's my hospital bed. We decorated one wall with hockey stuff, of course the big signed Toews jersey in the middle. I also just received some stuff from a hockey player who has been my childhood idol. If you knew me when I was younger I was ALWAYS wearing my Jeremy Roenick hat, even in my sleep. I just got an amazing Hawks jersey that he signed to me (with my name and everything eeee!). We're going to try and get the jersey a good frame and all, so everything looks nice. I'm not possitive who exactly set it up but I want to thanks sooo much to the hockey connection through Highland Park that made this possible. I can't tell you how amazing it was to get that!

My other wall of my room is quite the opposite. Theres a space under the window, maybe about 5 feet tall and 6 or 7 feet wide, and we've been painting little silly things on it. My whole family has done some stuff, and a lot of my friends had fun contributing. I will try and get a decent picture on here...

(click on the picture to make it larger)

Wow this is getting long already! We need an intermission or something, yeesh! It's motivation to keep up with the blog so I don't have as much to say everytime :) Don't worry, I do enjoy writing on the blog. This doesn't quite flow in the writing here, but just as an FYI, usually if there's no news on here, its good news.

Also to pass the time Ive been making old school friendship bracelets.... I'm not as good as Tony though, he can make such cool ones!! I was proud of my colors matching and straight lines and he comes along with his name written in the string and such.. yeesh! He'll have to teach me harder one. I like making them for friends and family though. Ive got a matching one with Carisa, a different matching with Alex, and a matching one with Tony. It's a nice way to pass time, and almost theraputic sometimes, doing the same motion and watching myself create something.

I've had a lot of aunts and uncles stop by, some bringing company (plenty enough) and some bring goodies (yummy in my tummy.) I have scheduled visits and get to play with certain people when I want. I love hanging out with anyone whose willing to sit in my room and chat or watch movies :)

A lot of people ask me if there's anything I want to do, but I want to let everyone know I am completely content with what I'm doing. All I want is to lay around with family and friends, and thats just what I'm getting. So really, I'm not being modest when I say that I'm fine, I'm really getting what I want!

Bella sleeps on my bed with me a lot, she's such a smart intuitive dog. She can tell when I'm feeing more sick and doesn't try and play as much, but she'll snuggle up when I need some lovin! She's such a great pal :) She can cheer me up so easily...but also sometimes she can make me a bit crabby. Shes started to 'beg' for food a bit. We don't give her people food, but I think shes smart enough to realize how good we eat and her boring food isn't quite cutting it :) Shes amazing though... gettin pretty big too! I even made a tiny friendship bracelet for her that I put a small bead on thats attached to her collar :) It's cute, but only a matter of time before it breaks off.

Medically...about time I start this part huh? What am I doing, writing a diary?

So about 5 weeks or so ago, I was still having pains, and contant nausea. I was put on some new meds that are helping so much. Since this new med, I'm not nauseas when I eat anymore! This is such a big deal, I can't even tell you how nice it is to eat without the fear of the afterwards. It's also given me an appetite, which I really needed b/c I was getting too skinny and nasty, and so I feel a bit better with the apettite I have now. Unfortunately I started to develop ascites (an accumulation of fluid in the peritoneal cavity.

It's suprising how large my stomach actually got. Looked like I was expecting triplets in about 3 months or so... Tony and I had already began to name the 'children.' haha. So all of that fluid was starting to cause major, major pain. Monday night while Dasha was over I got to the point where I couldn't handle the pain, because it was just pushing on different ograns, causing things to back up, etc. etc. all that yummy stuff. On Monday night we called the nurse and she came out and we started an IV dilaudid instead of just pills, hoping that would help. Eventually I went into the in house hospice center they have, to try and get my pain under control then go back home. We eventually tapped out all the fluid that was building (4 whole liters...yikes!) and there was still a little left. I cant remember the medical reason why but 4 is the limit for your body. I've started to see some stomach distention again, and I'm guessing during the week I'll go and have that tapped again. I was pretty nervous the first time, but they gave me a nice cocktail of drugs to go, and it was fine. The fluid is only in the abdominal cavity, so the needle only goes in about an inch, maybe 2. They give a local and just drain it out. Afterwards it felt so weird to be able to sit up normally and see my toes! I left Wednesday feeling much better.

The pain in the abdomen hasn't started yet (besides the skin stretching) but NOTHING like what I had before in my lower back and abdomen. We will get it done before it gets to that point again of course, we learned our lesson!

At home I've become quite anal about my meds and all (which is good.) I have a very detailed typed up list of meds to do when, and all facts I need to know. I have a brand new appreciation of my dad and how much his organization helps us. I also need my desk of medical stuff to be organized and all. It seems to be a small case of OCD after a new med, but hey I'll take it!

Last minute I wanna give a shout out to Holly and Phil Dolci, congrats on your wedding!

Lasty, I've assigned a new doc to my case, he goes by "docta, docta" ... Tony :) He helps check things off on my chart and ask questions. My other siblings have been great as always, helping me with small things like (i could go for a root beer, i buy you fly?) to larger favors. I'm amazed at their maturity how they are able to try and keep their life as normal as possibly while dealing with this. My parents really are amazing though. They both support in different ways, and there is NO way I could do it without them. Sometimes I think about other parents I've seen in hopsitals throughout my stays and I feel soo lucky to have them. We all are able to get on each others' nerves now and then of course, with this stressful scary environment... but I want to thank them.. once again... for all they do. I wouldn't be here without them.

So again, thank you everyone for all your support, its kept me going. I'm proud I made it past the 1 year anniversary of my surgery... I had some pictures saved (don't worry you definitely wont see them) and its nuts to see the progress I've made, just from an external point of view.

If I forgot something/anyone I'm very sorry this was a long blog to write on dilaudid! ;) Naw don't worry this were words from the heart, not the drugs. I've had a list made of things to write on the blog, and its been building up.

Lots, and lots, and lots , and 298374 lots more of love,

Sammy

p.s. sorry about the weird fonts and such, I don't know whats going on, and for some reason now all the other blogs have small font too... but hopefully you're caught up and can read this.. if not.. I would suggest copy and pasting it to a WORD program or such and making it bigger to read. That's my only idea 'cause it doesn't wanna get fixed on here! Good luck!

Darn.... Procrastination ...never leaves me alone!

2009-10-01T19:49:00.000-07:00

Hello everyone.. turns out I will never lose my ability to not do things on time :) I spent basically the entire day making myself a new detailed med-chart with everything they've been changin' up. I know I probably put people in suspense with my last post... but I honestly don't have it in me to write a blog now. The 'news' isn't anything very important or even news to some. So don't get all flustered :) It's just some info about whats been up with me lately. Tomorrow I think I will have time to get a nice detailed blog in there, with fun details.

Lots of love (till tomorrow),

Sammy

1 YEAR!!!!

2009-10-01T05:42:00.000-07:00

Hello everyone!

I'm sorry its been a while since I've posted, but don't fret because a nice juicy long one is on the agenda for today. I wanted to post this first though b/c it's been exactly 1 year since my big operation!!!!!! I'm starting off the celebration with sending dad for mcmuffins :) tee hee. I actually have things to do today which is weird for me, and we can see if the doctors took out my procrastination' gland when they were doing work in there. :) I've got icky news, normal news, and some good news! So until then I apologize.. but I have to do some things first before I can play (when its time to play you play!)

Sammy

P.s. Love and Miss you everyday Nonnie! Sorry, celebrating that birthday a couple days late with you, and don't worry Gia, my Friday pal, I wish you all the best too!

Ok if I dont stop now I might write the whole thing. Toodles!

Lots and lots of love,

Sammy

Summer's over :(

2009-09-03T09:51:00.000-07:00

As most of you know Sam has had a pretty good summer for someone suffering from late stage cancer. Someone with seven organs removed, five replaced/transplanted. Someone who in the spring of ‘08 was told there is nothing else we can do. Someone who was pretty much bed ridden from the summer of ‘08 ‘till this summer of ‘09. Well once Sam recovered from all the Chemo and transplant surgeries she felt a lot better. Most of the summer she was up and about, hanging out with her friends and family. She was going to movies, restaurants, bars, and was even planning a sky diving trip. Unfortunately the recurring cancer growths have started taking their toll again and has slowed Sam down to where she can rarely get out of bed anymore. She is battling fatigue, shortness of breath and constant pain & nausea. Her body seems to need 16 hours of sleep a day but she has trouble sleeping. Because of the constant nausea she rarely eats. Her port has been re-accessed and she is receiving daily fluids and IV medications. Her hospice Doctors and nurses keep having to increase her pain meds which get her feeling better for a few days before they need to make increases again. On good days we get her out a bed for a few hours in the evening to watch a movie, otherwise she spends most of her time watching DVD’s from bed. This week it has been seasons 1, 2, 3 & 4 of the show “House.” Sam can’t seem to get enough medical jargon. She also has gotten pretty good at guessing the next test or procedure House’s diagnostic team will try. Sam could probably pass some type of medical licensing exam herself right now, she seems to know all the procedures.

Besides from the headaches, mentally Sam continues to amaze us all the time. She is happy and a joy to be around. She is still looking out for everyone while trying to solve everyone’s problems. She hasn’t changed a bit.

As for those among you who have been asking what’s going on with my work... I recently had the fourth surgery on my ankle, which I had broken a few years back. My ankle has limited mobility and it is affecting my job performance. When someone needs help, they need and expect someone who can respond quickly and properly. My ankle is now very arthritic and stiffens up on me a lot to where it takes time to loosen up before I can move freely... to a point. So I have been off work on injury leave while meeting with management and doctors discussing my retirement options. On the plus side, I’m able to spend a lot of time with Sam and the family right now.

Thanks for all the continued support and well wishes,

Lots of Love,

Chris

Chicago Bandits Game!

2009-08-05T13:20:00.000-07:00

Hey everyone.. this post is a little different.. a good friend of mine has hooked me up for a pretty cool night, and friends are invited...she wrote this up for me, so see below....

Sam will be throwing out the first pitch at the Chicago Bandits women’s professional softball game August 8!! The game starts at 7:05pm (Gates open at 5:30pm) as the Chicago Bandits take on the Akron Racers. The Bandits will be raising awareness for the American Cancer Society all night at the ball park with special t-shirt and ribbon sales. Sam’s younger sister Carisa, will also be singing the national anthem. A group ticket block for Sam’s supporters has been set-up, so everyone can sit together. Call the Bandits office at (877)722-6348 to reserve your spot: mention you are interested in purchasing tickets for the Sam Cipolla group for the August 8th game. Tickets will be $8.00. The Bandits home field is located at Judson University, just off I-90 at Route 31. The address is Judson University, 1151 North State Street, Elgin, IL 60123. If you have any questions contact Brooke Buzard at (877)722-6348 or chicagobanditspromos@gmail.com

Thanks Brooke!!! :-D

Lots of Love,

Sammy

Bubble Buster

2009-07-31T16:02:00.001-07:00

Hey Everyone.. this isn't really a blog I want to write very much but it needs to get done. I haven't written in a while and maybe thats why there seem to be some false rumors spreading through the Glenview grapevine. Unfortunately, if you heard I'm better and going back to school... neither are true. I'm living my life as happily as I can enjoying each moment as much as I can. I'm not going through any treatment, so I'm actually not feeling SO horrible. Probably the best I've felt in a while actually. It won't last though. I'm sorry if anyone heard otherwise, because I really have NO idea where that started, and since I've heard it from more than a few people I'm actually very curious to find out. But that doesn't really matter. What matters is the truth, and it is what it is, so we'll deal with it. Hakuna Matata baby. Theres a lot of thank you's that I want to shout out on here, and I'm going to do that soon. Of course I wish I could name EVERY person b/c so many people deserve a fabulous thank you, but I'll do what I can. So.. sorry if this came as a shock to anyone, but at least this will hopefully clear things up.

Lots of Love,

Sammy

I know.. It's been a while..

2009-06-18T23:39:00.000-07:00

Hey everyone. Sorry that its been so long since I've written anything. To be honest I think I'm putting off a post that I don't want to write. But I want to put it out there that we have a lot of hard decisions to make right now, and we're in the process of figuring it all out. Soon I will let everyone know what we decide on. The path ahead is rough. It seems I have to chose to walk on glass or walk on hot coals. Neither seem very fun. I will choose what I feel is right for myself, and for my family. So.. decisions, and posts to come soon. In the meantime live your life like there's no tomorrow. I know its cliche, but do it. Remind yourself of what you love- and who you love. Tell them. Then tell them again. Figure out your favorite things.. sounds, smells, sights.. and surround yourself with them. For me- favorite sound has got to be Kathleen's glove at first when I threw a real hard one, and she caught it just right to give the loud POP.. of course followed by the umpires booming "Out!" Smell.... that's a tough one.. I think it might have to be when my mom is cooking a bunch of peppers with tons of garlic on the stove and the whole house is filled with the aroma. Anyways, live, love, and laugh. For me!

Lots of Love,

Sammy

More Pictures

2009-06-02T21:38:00.000-07:00

Hey... You should read the entry below first.. I mentioned I was adding pictures from my birthday party but I could only add so many... so here are a few more...

I have the best family and friends in the world

2009-06-02T21:17:00.000-07:00

Hey everybody.. so this is a little late, I apologize for the delay. I wanted to thank everybody for my birthday. It was more than amazing. Some of the gifts are so amazing, you are all too kind. Gifts aren't really what the great part was though, it was the company. Everyone is so sweet and I was glad that I was able to see everyone and chat you guys. You keep me going. ALL OF YOU! So really, thank you. There's been a few requests for some pictures for those who don't have facebook. I'm going to put up a few from the party. Also, I'm going to attach a link to my photo album of the party. It's on facebook, but the link I'm putting up you don't need facebook to view it. You just wouldnt be able to comment on the pictures, or do anything facebook nonsense like that. Also, the last picture is not from my party. My aunt Mary is tight with the Catholic church crowd and brings me nuns and priests often :) These two sisters came over and were the sweetest people I've ever met, and so funny! I loved their voices too, sounded like my Grandma Winnie whose from Mississippi. So thats the last picture, the rest is the party. If you go to the link to see the pictures it will send you to a page with a lot of small pictures on it. If you click on the first picture it will become larger, and from there you can either click 'next' or just click on the picture (does the same thing.) To warn you first, there is a few over a hundred pictures, so you might get bored. Alright, now I'm rambling.

PICTURES FROM PARTY CLICK HERE

Lots of love,

Sammy

p.s. I still haven't sat down and written my birthday thank you cards yet... sorry... sometime this year! I apologize in advance for the illegible hand writing.

Your Next American Idol

2009-05-22T15:07:00.000-07:00

Since American Idol finally came to an end, as my boyfriend claimed the title (boyfriend, not husband) I figured I would start advertising the world's next A.I. His name is Tony Cipolla. Enjoy

Just In Case You Didn't Get It...

2009-05-21T10:05:00.001-07:00

Everyone is invited to the open house, wanted to let you know. That's what we meant in the last entry, but i guess it wasn't clear. So see ya Saturday!

Birthday Wishes

2009-05-18T05:42:00.000-07:00

Hi Everyone,

Things have been pretty tough these past few weeks as we were told that the cancer has popped up all over Sam’s lungs. We were days away from returning to Miami and had to cancel our reservations. We were hoping to get the last of the follow up transplant surgeries done while there. Now that will have to wait. Surgery would delay any Chemo options and vise versa.

Since then we have been meeting with doctors here trying to determine what options we now have. We will meet with yet more new doctors this week and we are trying to get a formal consultation at St. Jude’s Children’s Research Hospital in Memphis.

Sam will turn 21 this Saturday (May 23) so we hope she would still qualify for the Children’s Hospital. Unless we are requested there at St. Judes, we will be here this weekend, so ALL ARE WELCOME TO STOP BY Saturday to wish Sam a Happy Birthday!! We plan on having family, parents, etc. during the day, and Sammy's younger friends are coming at night. It will be nice to see everyone again. We'll keep the grill going. Open House starts at 1, Sammy's friends around 7, but are welcome whenever!

Lots of Love,

Chris & Doll

Change of Plans (I know.. I've had this title before)

2009-05-05T12:22:00.000-07:00

So as you know, we were hoping to be in Florida this week or next for the reversal of my ostomy. They first required a contrast cat scan so they could see what's going on. I went and had the CT done on Friday at Chicago. Unfortunately on Friday night we received bad news. There seems to be around 10 or so nodules in my lungs. Also several lymph nodes appear to be enlarged in my abdomen, but we're not sure now if those are cancerous or not.

For now we wait to hear different plans and options from our doctors. We will weigh out the options from Chicago, and Miami. We are also still in contact with doctors from MD Anderson in Texas if necessary.

I want to say thanks to everyone for the continuing support. I also want to thank the Interact Club at GBS. Mr. Lyon who runs Interact called and said they're having a benefit car wash on Saturday at the Borders in Northbrook (Lake Cook & Waukegan). The proceeds are going to be split between Relay for Life and my fund I have going. Thanks to Interact and everyone involved in that.

I will hear more within the week and decide which option seems best. More to come...

Lots of love,

Sammy

Vanco = bittersweet med

2009-04-19T15:07:00.000-07:00

Hey everyone! I got home from the hospital on Tuesday and once again I'm doing the antibiotic vancomiacin (sp?), 'vanco' for short, for 10 days. They believed that I had another staff infection in my port once again. They have a kind of 'three strikes you're out' theory with these infections. I've already had 2 in this port since I got home from Miami. The high fever is my body telling me whats wrong and it usually always is a positive blood culture. If it happens again it's 'strike three' and they think that instead of just having coincidental infections, there is bacteria living in the port, so I would have it removed and possibly another put back in. Hopefully that doesn't happen again. Last time it happened about a week after I finished the vanco. The vanco is super easy to administer, because I have a port. It comes in a pressurized ball smaller than a softball (fastpitch duh) but bigger than a baseball. All we have to do basically is connect it to my line (with a few other small things.) I do that twice a day and unfortunately despite the fact that it gets rid of the infection it wears me down. It has happened before when I'm getting vanco. Small price to pay though. So enough of the non-imortant news....HOW BOUT THEM HAWKS?!?! I'm accepting wedding gifts for me and Jonathan Toews if anyone was wondering. The picture at the top is courtesy of my aunt Cara. Also I love phone calls and text messages but um......not during the Hawks games. Dad's beard is coming along nicely. Go hawks.

Lots of love,

Sammy Toews

p.s. I got in trouble from a previous post. Alex does NOT, I repeat DOES NOT have morning gas. That's Tony.

Hop Hop Hopin' to the Hospital

2009-04-13T14:16:00.000-07:00

(Just a reminder you can click on the pictures to view them in a larger window)

First of all, Happy late Easter to everyone! I hope you had a great time spent with loved ones, good food, and maybe even some treats from the easter bunny! The past couple weeks after the last blog haven't been too bad. I'm finally starting to get a bit more energy, and be a little more active. (No laughing..) I've been doing Wii fitness as a fun way to help myself a little bit with some exercise. I use it mostly for balance, as I've lost that. Last time I tried to ride a bike I hit a telephone pole..woops. My weight is finally starting to pack on, which I'm assuming means my intestines are finally absorbing like they should. I'm actually super tired right now, I played with the night nurses last night instead of sleeping, so sorry I'm gonna keep this short and hopefully explain more later. I came in Friday morning (like 3 am) b/c I had a high fever and my counts are always going to be low now bc of my immuno-supresants. My first blood culture came back positive which we were anticipating, so they believe I have another staff infection in my port. They hope to get rid of it with antibiotics (ceftazidime and vanco.) If they can't get rid of it the port will have to be surgically removed. If we do clear it however, and it comes back again soon (it would be the 3rd time since being home) they would remove it without trying to clear it. It's kind of a 3 strikes your out rule here.. if it comes back that many times they believe its 'living' in your port, and not going anywhere. So hopefully we can cure this, and we're hoping to do the reversal of my ostomy down in Miami soon. I cannot wait. I'll try and keep you posted on what happens.

On Sunday the Easter bunny stopped by my room and gave a pretty sweet basket of goodies! Also I got another sweet treat b/c my whole family came and spent the day here so we could all be together on the holiday (since I spend them all in the hospital.) Have a great week everyone

Lots of love,

Sammy

hello again

2009-03-26T16:42:00.001-07:00

Hey everybody....bout time I got my butt on the computer and wrote on my own blog huh? So as you know I was in the hospital and I'm continuing the antibiotics at home. Also I'm getting nutrition at night and fluids during the day. I'm on the leash more than Bella. Anywho, I found something interesting today. My old mac that I bought before I went to NIU, well we've now given it to Carisa and I have the new Macbook Pro. So we transfered EVERYTHING that was on that computer over to mine when I first turned it on with a firewire cable or something, so I still had some stuff on Carisa's computer. It has been running super slow so I went and deleted a lot of my old junk on there today to give her space and have it run smoother. At one point I was going over word documents and I wasn't sure if an old paper was mine or hers so I read the first paragraph (turned out to be an old high school paper) and it was something like this:

"Pain is temporary, quitting lasts forever." This is a quote by Lance Armstrong about his difficult battle with cancer. No, don't worry I'm not a cancer survivor; my battle wounds don't run that deep. I only have one battle scar on my knee that blah blah bla bitty blah....

dang jinx.

So for now I'm weaker than mom's will power before a nice piece of chocolate. I've got absolutely no muscle and I get tired doing anything. Hopefully the weather gets warmer so I can at least walk outside because it's way too cold for me now. And walking laps around the kitchen gets old. I really need to do this though because I could have my colostomy taken down once I'm strong enough. Nothing would make me happier (okay I lied, I could come up with a few.)

Coming home has been bittersweet. I think I convinced myself in Miami that coming home would give myself a sense of general feeling better (physically) but that of course isn't the case. So I've just been trying to get used to being home and still as physically down. Oh, some good news. I haven't posted this because I personally am not excited about it, call me pesimistic, but its just the way I see it. Recent cat scan images don't show any sign of cancer. The thing is a catscan wouldn't light up areas with possible cancerous cells as a petscan would. Since the lymphnode was positive the doctors in Miami believed I have cancerous cells, but this is an early stage. I haven't had another petscan yet which I'm guessing will be the next step. That's why I'm currently not on any chemo- you wouldn't hit me with the poison unless you had a reason.

This blog is super dooper not-flowy (sorry I'm rusty) and I'm just writing things as they pop up in my head. I never did write a blog yet thanking everyone in Miami who made my life saving surgery possible. I was under the best care and knew it too. I am forever thankful to everyone in Miami (whether still with us or not) because they made it possible for me to be typing right now.

Friends, Friends- get home already will ya! A lot of my girlfriends are studying abroad and they seem like they're having a blast. I can't wait for everyone to be on summer break, however long or short it is, I've missed everyone so much. AH- A MUCH NEEDED SHOUT OUT/THANK YOU. When I got home I came into a room that wasn't quite as I left it. My room was filled with 1,000 strung paper cranes, hanging around the ceiling of my room, and over my bed. This is said to be good luck, with an old tale behind it. My amazing friend Kiira started making these delicate origami cranes when I left for Miami. She realized eventually this was too much for one person! She called on her sister with her freshman english class for help (She's the teacher.) I heard they made a whole unit out of it, learning the tale, reading some blog entries (probably correcting my grammar) and of course making the remaining 500 cranes. I can't thank everyone enough it brightened up my room and was an amazing surprise...and hey, I could use all the luck I can get. Kiira once again- you rock. There is one little section in the picture to give you an idea.

I'm sure there's many more things I wanted to add that I'll remember later.. I'll save up for another non-flowing spastic entry.

Lots of love,

Sammy

P.S. some of you have asked what Bella did when I came home. I think the best way to describe it is she turned into a battering ram and the target was my stomach. Not quite as I imagined it....a tad more painful, but at least she was happy (I think.) She sleeps on my floor (not that she doesn't attempt getting in my bed) next to me on a blanket that is now hers. My mom says we make the same grunting noises in the morning...I just don't want to take all my pills I don't know what her issue is! Maybe gas. At least that's why Alex grunts

Home Sweet Home

2009-03-18T07:34:00.000-07:00

Sorry, It’s me again.

Sam wanted to write this blog but just never felt well enough to get it done. I’m sure she will follow it up when she is feeling better. WE’RE HOME! Sam and Dolly hitched a ride with the good people at Motorola on their Gulfstream 450 Corporate jet and flew in style. They had a swift, smooth and fast flight from Fort Lauderdale to Palwaukee on Thursday. We are very thankful to Corporate Angles and Motorola, especially since Sam was not feeling well that day and would never have endued a long day of flying commercial. After driving the car to the edge of the airport right up to the doors of the building where we were able to sit a wait in luxurious comfort, while the crew prepared the plane parked a couple hundred feet away, I don’t know how we ever want to go commercial again. Everyone was so friendly, no TSA, lines or crowds, it was really nice….for them anyways. Me… I had to drop them off and start the long drive home hauling all our stuff. I had planned my first stop for the night just three hours away at Cape Canaveral to try to catch the space shuttle launch. (By the time I got there Sam and Dolly were already home.) The timing was working out prefect for me until the blastoff was changed to Sunday night with no guarantee of a launch at that time. So I drove out of the Kennedy Space Center Friday listening to my new Andrew Bird and Radiohead CDs and made it home in time to watch the launch on TV.

As for Sammy, she got to spend a few days at home before a series of doctor appointments were scheduled this week. At the first one they decided to keep her and admitted her back in at the University of Chicago. Sam was still not feeling well and was very fatigued. At the doctors visit her fever spiked, indicating she must be battling some type of infection. They started her on antibiotic right away and placed her back on 6^th floor of Comer with all her friends. They were all excited to see each other again. Hopefully Sam will be feeling a lot better and be out by this weekend.

We have a lot to do but hopefully we will get to see everyone soon.

Lots of Love,

Chris

clearance clarence, roger roger

2009-03-08T05:26:00.000-07:00

Morning everyone,

The doctors here in Miami have given Sam the official clearance to fly home. They have been working hard on the transition with the doctors, nurses, records and the different supply companies. However that doesn’t mean Sam is done with them. She will be working with the transplant team for life. As a routine, every two weeks Sam will have blood drawn with the results sent to the transplant team. Both the type and amounts of Sam's medications will constantly be adjusted based on these test results. Everything else medically going on with Sam will also be forwarded to the Miami team.

As for getting home, we have contacted the Corporate Angels Network in an attempt to avoid flying commercial airliners. The Corporate Angels Network finds empty seats on participating corporate jets to transport cancer patients to where they will be receiving treatment. Beside saving us the cost, this will allow Sam to avoid the long times,walks, lines, TSA screening, and over crowded space within the air buses. It is a wonderful program.

Sam has her first doctors appointment scheduled in Chicago on March 17^th but she can go now. We are just waiting on the call that they have a flight available for us.

Since they can’t guarantee a flight will become available, we have started exploring other options for Dolly and Sam to fly home. As for me, I will be following the directions of my GPS while hauling back everything that doesn’t fit into their carry-ons. I can’t believe the GPS route goes right down the strip in Vegas. I might have to stop there to give the car a needed break.

Hope to see you all soon.

P.S. Oh yeah... Sammy. She is getting a little stronger. However she did have a 24 hour admission back into the hospital last week for yet another blood transfusion. She is still on TPN and fluids but she is eating again. Her abdomen wounds are still healing but the good news is that there does not appear to be any infection. She is very excited to finally being able to go home.

Lots of Love,

Chris

confusion and compassion

2009-02-25T05:09:00.000-08:00

Sam is currently out of the hospital and resting in our apartment. She is still very weak and receiving IV fluids during the day and TPN at night. Things have been pretty chaotic because apparently our home care, IV medication & supply company which also contracts out our home nursing company was taken over by a Walgreens company two days ago. The transition has not gone too smoothly. All our old contacts were instantly unavailable and new people were calling with no explanation, like it was no big deal starting the process over. The new nurse who came out last night has the same name as the old nurse just to confuse things a little more. However it worked out fine as she was very sweet and competent.

Those of you who know our mutual friend Jennifer Mosher, please wish her luck as she is awaiting her test results today. Jennifer has been battling Breast Cancer for over 5 years, then it metastasized to her bones, where, as you probably know, there is no definitive cure.

Jennifer found a Dr. at M.D. Anderson in Texas doing clinical trails where she received treatment involving radiation and a stem cell transplant. After a little time away from Texas recovering, Jen just returned to MD Anderson to learn the results of her treatment.

Please visit Jen’s site at www.jenmosher.com where you will see that she is a very beautiful, sweet and compassionate woman. We wish you the best of luck Jen… with all our love,

Chris and family

Acinar

2009-02-23T04:11:00.000-08:00

Sam is still recovering from the latest surgery but should be getting out of the hospital soon. They have started her on a liquid diet and she is able to get out of bed and walk for a minute or two a few times a day. It appears the new connections they made have been successful. The excitement the doctors showed when things started working after five days told me how concerned they actually were about it.

Her abdomen did become infected as they said it would. Sam is receiving antibiotic intravenously for it. However she is also receiving TPN, fluids, and other nutrients intravenously through her port and the IV’s in her arms. The IV’s though have become a problem causing her swelling and tenderness to her arms. Hopefully as she starts to eat she can get off the TPN, freeing up her port so they will be able to remove the IV’s from her arms.

As for the lymph node removed, it did test positive. What this means we're not yet sure. At this time it really does not change our plans. The plan is still for Sam to have follow up Chemo treatments. It is unknown if the lymph node became infected before or after the surgery. To the doctors I don’t think it matters as to the treatment. Sam and I believe that it was there before the surgery. When Sam was receiving Chemo in Chicago she would notice a lymph node that would swell up, in that same area where this lymph was removed from. We believe it must be the same.

As for what’s next.... The doctors here in Miami have initiated conversations with the doctors in Chicago. After examining the removed tumors from Sam, pathologist have reclassified the type of cancer she is suffering from, to one which is very similar to Pancreatoblastoma. Acinar cell carcinoma. This is also a rare type of Pancreatic cancer occuring in only 1% of all pancreatic cancers. The reason they originally thought it was Pancreatoblastoma over Acinar was histology that Pancreatoblastoma usually occurs in juvenile females. Acinar usually occurs in elderly males. Treatment-wise we don’t believe it changes anything. There is more data on Acinar but still no established standard protocol.

What this does change is our Oncologist. Dr. Cohn at the University of Chicago Hospitals works out of pediatrics and deals with juvenile cancers. She stated she would have to refer us over to the adult side because she has never dealt with Acinar. No longer being able to be treated on the 6^th floor of Comer broke Sam’s heart as she loves and misses the friends she made there.

The good news is that the doctors here are putting us on the fast track to get Sam home. As soon as we can get Sam strong enough to travel we’ll head back North. There are some complications and concerns about being away from the transplant team (especially when the treatments start) but we are working on that. Right now Sam would really benefit from being back home with family and friends... Oh and that dog of hers. Hopefully this will occur within the next two weeks.

We will keep you posted.

Lots of Love,

Chris

Medical stuff

2009-02-13T15:35:00.000-08:00

Hello everyone,

Sam had her scheduled ostomy/intestinal surgery done Wednesday. If all was perfect it was to start at 7:30 am and take about an hour. Well she finally got into the operating room at about 1:30 pm and the surgery lasted until about 6:30 pm. It appears at this point everything was a success. We will know for sure once they start letting her eat again.
There were several reasons why the surgery took so long. One was kind of expected. The doctor had hoped to reroute and do the delicate reconnections to her intestines through her ostomy (one of the opening in her abdomen). Unfortunately that did not work out and he had to open Sam all the way back up again to do it. It turned into another major operation, not the little one Sam mentioned in her video blog. This turned out to be a good thing because once inside he found a few potential problems with a section of the intestines (being narrow and twisted). He bypassed and removed the problem area. Also while in there he noticed an enlarged lymph node which he also removed. If it turns out it was enlarged due to cancer, it’s good that it was found and removed. If the biopsy on it turns out to be negative, that’s even better news. The concern now is controlling the expected infections you get after this type of surgery. Sam will be in the hospitalized while recovering and dealing with the infections while also making sure there are no new problems or complications from the new pipe work (obstructions, leaks, bad sense of direction etc.) Also interesting to note, the illostomy opening in her abdomen they do not sew shut. Because of the 100% chance of infection they leave it open and exposed so they can treat it as it heals. I know how weird this all must sound to some of you, but it is what it is. Hope it's not TMI.

This major surgery was a set back and really sad to us since Sam had finally had started to feel better having good days where she could move around, and started being herself again. Dolly and I were just getting to a point where we could start trading off time with Sam and being back at home taking care of everything that’s needed there. You know- kids, house, things like taxes, the dog's mess…

As for what’s next, we're still working on it. We know Sam will have to have a follow-up cancer treatment once she's strong enough. We still don’t know where and what kind of treatment that will be. The doctors are working on those plans. If they decide Sam should be treated before she is physically able to fly home then we will start the process here. If not, we hope to be home next month. However, besides arranging for cancer doctors back home we are still looking for doctors back home who are willing to work with the Miami team and are able to perform the specialized transplant procedures Sam needs. One of her doctors here keeps telling us to keep a plane ticket in our pocket if we go home this soon. At the same time they realize that mentally it would be better for her to be healing back home.

Also it was mentioned that some of the blog hasn't been posting properly since Sam's Christmas one. Sorry for the scare. I’m at a lost as to why.

Thank you everyone for giving us this opportunity with Dr. Tzakis and his team. Also a special thanks to everyone at Highland Park for giving me the needed time to be here longer then I’d planned with Sam, but it is where I belong.

Lots of Love,
Chris

Slumber Party!!!... i mean.. working out and eating right and doing medical stuff

2009-02-09T19:18:00.000-08:00

lots of love,

Sammy

Angels

2009-01-28T00:15:00.000-08:00

I've always had mixed thoughts about angels. I wasn't sure if I believed they live among us, or we have certain people we know looking out for us... or if you meet one that leads you, leaves you....then you get. Julie came into my life the day I was waiting for me surgery. She was my "Back up" (which I hate that word, it means if something goes wrong with me somehow she would come in and take the organs). Her life was so hard. For 4 years prior to this she had been sick. Basically her stomach was paralyzed, so she hadn't eaten or drunken anything for 4 years. She was getting TPN (total parental nutrition; meaning she was given her fluid through her line , which is also bad for your liver). She really had it tough.. we shared stories since we were together for the entire day (4 am- midnight) and I felt like what I had was silly. I was thinking....why isn't she first and me be backup? I mean isn't that how it's supposed to work? It's taken me a while to accept (now just from this but many experiences in my life and helpful words from my Godfather) that everything happens for a reason, and sometimes we understand the reason, and sometimes we have NO idea why, but it is what it is. After that we saw each other again after she had her surgery. I was in the room next to her for a brief amount of time... 2 days I think. I would pop in and say hi but she seemed real down so I didn't want to bother her. The next day I tried again in the morning.. still not well, and they took her to the ICU where she remained the rest of her life. Julie passed yesterday after a horrible horrible battle. Julie was an angel; I don't know to how many others she was an angel to? I know she has touched many hearts..but if you're an angel to one are you one to all? I know her parents believed she was an angel, and I bet others say the same thing. But I wonder who she REALLY was an angel to. The word can be used without deeper meaning and it can get confusing. She was an angel to me( the real kind.. sent from God to guide) as I learned to fight harder. That girl was the strongest I know..so many things just went the wrong way and its not fair and I wish it didn't end this way. It made me grateful that my surgery (the same one) went so well. I had some bumps along the road but when you have one of the biggest surgeries you can have - that is expected. I'm grateful for my family and support, (Julie's parents were always by her side) and I'm grateful for the health condition I'm in. It's not generally how you would want to feel but it is what it is, and I'll keep on fighting... in Julie's honor. Please thank the Angel Julie who showed me the way And will keep me fighting 'till the end.

RIP Julie Werner

? 1982- January 27, 2009

The angel

Julie

2009-01-27T05:33:00.000-08:00

Hey this is Sam, sorry this is really short I only have 5 minutes. But I wanna take it to say please everyone pray for my friend Julie. I know you don't know her but she had the same procedure as me. She was in the room waiting with me before my surgery. I also have to pray and be thankful for my success with the operation. She had problems before which I guess attributed to her surgery. She is struggling very much. For the 2nd time she's in septic shock. I have to go to the hospital for regular blood work. I'll try and add more later

(for now) lots of love,

Sammy

Progress

2009-01-11T11:53:00.000-08:00

Hi everyone. Sorry we have been a little lacking with updates and information. Things had been very tough but finally they are starting to get better. There has not been much change or new medically to report on, just trying to heal. Sam spends most of her time in bed, still weak recovering from her surgeries and procedures. So to make up for it I’ll kind of do a recap of where we are. I’m sure it will end up way too long…sorry.

Sam underwent a multi-visceral transplant on October 1, which removed her pancreas, liver, gallbladder, spleen, stomach, both large, and small intestine. A five-organ single donor graft, consisting of a pancreas, liver, stomach and the small and large intestines, replaced the removed organs. The new organs were still all connected to each other as one large graft. The spleen and gallbladder, which do not transplant well, were eliminated, as the body does not need those organs anyways, to survive. Multi-visceral transplants are relatively new. One of the pioneers and possibly the worlds leading expert on the procedure is the doctor here in Miami, who performed the surgery on Sam. He is surrounded by a wonderful staff whom we deal with on a daily basis.

Sam came to Miami for the procedure after 10 rounds of chemotherapy in nine months which failed to eliminate the pancreatic cancer, which also had metastasized to her liver. The chemo appeared to have slowed or stopped the growth in the pancreas but the liver tumor(s) kept growing at an alarming rate. The plan then was to do the Whipple procedure on the pancreas, and then eventually transplant the liver. Twice that procedure was scheduled then aborted at the last minute due to complications. After the second failed attempted we were contacted through this blog from a mother who was following Sam journey after she found it by googling “pancreatoblastoma.” Her daughter had contracted this rare disease and she came across Sam’s blog in her research. Her daughter’s story is very similar to Sam’s but with different surgical complications. Her team reached out across the country and some of the top doctors at the top facilities came to the conclusion that her best option was the work that was being done in Miami by Dr. Tzakis. We contacted Doctor Tzakis who was willing to see us right away. After several long months of paperwork and numerous tests and procedures, the doctors and insurance company all agreed that Sam’s only hope medically was through this multi-visceral transplant.

By this time Sam was not eating and in a lot of pain. She was too weak to travel, but with a nice little send-off by the staff at Comer Children’s Hospital in Chicago, Sam was medevaced by jet to Dr. Tzakis at Jackson Memorial Hospital in Miami. After a few more weeks of adjustment and tests, Sam was found to be a transplant candidate and placed on the top of the donor list. A few hours later a donor graft became available and Sam had the surgery. All the visible cancer was removed. Some of the doctors on the surgical team stated that they were amazed and surprised at the size of the liver/tumor that was removed from such a small child. They wondered how she was able to function with the pain it must have been causing.

Because of the growth of the tumor extending out of the liver, the doctors decided they needed to go back in and clean out that area for cross contamination. Unfortunately this had to be done two days after they just went back in to do a routine surgical (5 hour) procedure due to expected complications from such a major surgery. These three surgeries in these first weeks of October literally took everything out of Sam and left her already weakened body extremely fragile. However, the doctors stated that considering there is no larger surgery a person can have, she was doing very well. As the weeks went by Sam got even weaker. With all the surgical pains, ongoing procedures, all the different complications, not being able to eat, her new ostomy’s, draining tubes, feeding tubes, central lines, ports, difficulty breathing, and a few scares, Sam was understandably left bed-ridden and not quite herself. The usually communicative, upbeat girl has remained loveable and sweet, but has given up interest in her cell phone, computer and almost everything else. So to all of you who Sam usually communicates with regularly, it’s not you. Give her a little more time to start functioning again on her own.

Sam has now been out of the hospital for about three weeks. Even though she still needs constant care, the doctors felt they needed to get her out of the hospital for both her physical and mental well being. She has been hospitalized since September 2 with the exception of a few times for a few days.

The plan now is to try to get Sam’s strength back by eating and physical therapy, while keeping her infection-free and out of the hospital. Sam has lost 50 pounds since this all started and still does not have an appetite without the help of pills. When feeling good enough, the pills will give her the munchies for a few hours during the day and we will feed her whatever she wants. As far as her physical strength Sam can only walk about 20 steps before she is winded and too tired to go on. Until recently she was hooked up to her IV pole and oxygen all the time, which slowed us down. Sam is starting to have a good day now and then, so progress is being made. As she is now getting off the IV fluids and oxygen we are also hoping to eliminate her NG feeding tube this coming week. That tube goes through her nose to her stomach and I think it is the cause of some of her ongoing nausea and dry heaves issues. She also has been off her TPN (feeding directly to her liver) since Thanksgiving because that was casing problems. So if we can keep her from getting dehydrated and malnourished by eating, we will be eliminating a few more tubes and connections. Progress.

Sam also has pleural catheters in on both sides of her chest. These go through her ribs (causing a lot of pain) allowing fluids which the body normally absorbs, to drain from her chest cavity. The build-up of these fluids has caused her a lot of breathing problems including collapsing of her lungs. The good news is the fluid appears to finally be slowing down to where she might be able to get those removed this week. But we’ve been fooled before.

So if all goes well this week, Sam will only have three medical extensions left in her body: The two ostomys and her port line. Once we get to that point I think Sam will start bouncing back quickly. The ostomy opening give the doctors access to check for rejection of her new organs. These should be open for many more months. Sam’s new organs have been functioning as good as can be. Not once have they shown any signs of a problem. Her port will also remain for some time. They currently use it to draw blood. Her daily medication varies depending on her blood draws, which she gets frequently. Also some medication and IV fluids are still administered through her port. The port she currently has is not the same one she arrived with. When Sam was fighting an unknown infection they pulled her old UCH port as a possible site/source of the infection. She now has a new one inserted on the other side. This port probably will be utilized for more chemo for Sam. The plan down here has always been to remove the cancer, then once she has healed enough and gotten strong enough, to do another round or two of chemo. The reason is to kill off any remaining cancerous cells still in her system. There are no visible signs of any tumors in her body, but everyone feels it that it would have been impossible to have pulled all cancer cells out of her. So hopefully another dose of chemo will kill off any cancerous cells or at least keep them from growing or mutating. At the same time they don’t want to over do it and cause damage to her heart or new organs in her already weakened system.

Sam’s doctors since the time of the transplant wouldn’t discuss the cancer issues until she is recovered from the transplant surgeries. Well we are just starting to have those discussions now. Last week Sam had a CT PET scan and based on those results I assume we will start discussing what’s next. We have a long way to go but I think Sam is starting to turn a corner. Right now she still cannot function on her own and still needs the assistance of both Dolly and me. Once she starts to be able to take care of herself a little bit, Dolly and I will try to split time between home and here. A decision has still not been made of where the chemo treatments will take place; if it is going to be back in Chicago or Houston. Sam will still have to be seen by her transplant team here, but now I am getting ahead of myself. One step at a time. I was going to update on life here in our little apartment and things back home, but since this grew so long I’ll save it for another time.

Last night after 24 hours of snow was Bob Frank’s Family Fundraiser at Hoffman School. Where do we begin to explain or articulate our feelings of gratitude for not only the time and hard work put in by so many people but also how it affects us? People who have been long time, dear friends, and people we barely know or don’t know at all. Thank you everyone who attended, volunteered, donated or contributed in all the different ways. I have been hearing wonderful stories all morning that are really touching. How do you thank schools?

We could not have accomplished everything to bring us to where we’re at now without all the help and support from everyone. Sam would’t be here now if she didn’t get the transplant when she did. She is enduring a lot to get her strength back to continue this fight. She is past a point where people, stat’s and the books said she would never go. She is a pioneer hopefully opening doors for other people too.

Lots of love,

Chris

Merry Christmas!

2008-12-25T08:10:00.000-08:00

Hey Everybody!

Happy holidays!!! I've been out of the hospital for a while, and have had many visitors. Thank you to everyone who came down. It's so nice when you're here. Right now, I'm enjoying Christmas with my family because Alex, Carisa and Tony fought through the winter storms to get here. I am happy to see them! Thank you Cara and Tom for the amazing Christmas Eve dinner you sent. It was soooooooo good and I ate a whole steak myself! Thank you everyone who sent out goodies as well. It has made this Christmas even more exciting and gives me a little taste of home (I sure do miss it!!)

I hope you all have great holidays yourself and that the new year brings joy, love, and good health to all.

Lots of love,

Sammy

Stuck in Miami

2008-12-16T14:06:00.000-08:00

Sam was discharged late last night feeling a lot better. Both pleural catheters were replaced and started draining again easing up the pressure in her chest, allowing her to breathe easier...for the moment anyway.

Thank you to Dasha, Sams good friend who came in and lifted her sprits, however Dasha is now currently stuck at the airport trying to get home. Sam is now looking forward to this weekend which will bring more dear friends and the rest of the family.

Lastly we attached a link to the fundraiser being put together by Bob Frank and friends at Hoffman School where both Sammy and I went to grade school. Thank you and sorry about all the ice.

Lots of Love,

Chris

just breathe (4 u Carisa)

2008-12-11T06:35:00.000-08:00

Hi everyone,

After a long and difficult weekend Sam was admitted back into the hospital Monday morning, but hopefully will be getting out within the next few days. She is still dealing with the complications of the surgery. Sam was having difficulty breathing (even with the home oxygen) due to the fluids still building up in her chest around the lungs. The doctors expect this fluid issue to last a few more months for Sam. In the mean time, it has left her very fatigued and weak. She is still getting nutrients through an NG tube but she is able to get out of bed for a few hours during the afternoon and eat a little bit. Most of the surgical pains are gone but she still has pain from the pleural catheters “fluid” tubes. The good news is that the organs and the ostomys are functioning well. Also with the holidays coming she is looking forward to seeing some of her friends and the rest of the family. Oh, and did we mention that since we have to be away from home during the winter how grateful we our for the little things, like that the Doctors are here in southern Florida ☺ Sorry to everyone home in Chicago who are stuck back in the windy city with the usual cold, snow and political corruption.

Lots of love,
Chris

PS. sorry we are a little late, but happy 3rd Birthday to Lauren Connelly!

Bad Timing (sounds like a farscape episode)

2008-11-30T13:07:00.000-08:00

Ok, I know, I’m not doing so well keeping everyone up to date. When I last wrote Sam had finally got out off the transplant floor and was in our apartment dealing with the TPN issues. The next morning (Monday) at her scheduled lab and clinic appointment at the hospital, they decided they missed her too much and decided to take her back. They wanted to medicate, hydrate and test our theory that it was the TPN that Sam was reacting so badly to. Our home nurse didn’t think so and Sam’s doctors were skeptical, but after the test they agreed with us and stopped the TPN. After such a rough week, Sam was mentally and physically exhausted. She was also feeling down because her friends were arriving in Miami just as she was being admitted back into the hospital. She wanted so bad, to be out for her friends visit. Well, three of her best friends: Ness, Carly and Alex came and spent every possible minute at Sam's bedside. By the end of that first day the change in Sam was unbelievable. She was happy and feeling good hanging with her friends. So good in fact, that Dolly and I took our first day off in months. The girls in the mean time had Sam sitting up playing games and eating McDonalds and her favorite subway sandwich #4 (this was after not eating anything by mouth for almost two weeks.) The Doctors saw this change and told Sam if she was still feeling good Wednesday they would discharge her Thursday morning to be out in time for Thanksgiving. Sadly the three girls had to leave Wednesday, and girls- I could never thank you enough for what you did for Sam’s spirits. Well Sam's Doctor and coordinator kept their word and worked hard to prepare everything for Sam's early release Thanksgiving morning. Dolly went shopping and we prepared to have a Thanksgiving Feast with all of Sam’s favorites in hopes she could enjoy at least a bite or two of each. Well Thursday came and we got there early to get Sam, but instead of a Thanksgiving day feast we ended up doing a Thanksgiving day fast. Because of the skeleton crew working the holiday, the assigned Doctor for the day never got around to Sam for discharge. An aggressive nurse was finally able to obtain authorization for discharge at 5 pm from the doctor and we finally got out a little after 7 pm. A little late to start the dinner but I realized that day, Thanksgiving is not about the food, (or football) it’s about the family. While we could not be with Alex, Carisa and Tony (and all the other names) we were so grateful and enjoying our time with each other (especially with Sammy). Last Thanksgiving, we didn’t know if we would ever share another Thanksgiving meal with her. We were blessed the next day as Dolly made us a wonderful gourmet, yet traditional Turkey dinner in our limited kitchenette. Kids back home, thank you for sending us the video…it made us laugh. OK now that dinner is over, tonight it will be about.. football. The Bears are making a rare appearance on TV tonight here in south Florida.

Hope you all had a wonderful Thanksgiving, and remember to live in the moment, enjoying the time you have with your loved ones.

PS. What did Dolly and me do with our day off you might have asked….I’ll never tell ;)

Lots of love (ok, I told)

Chris

it's always something

2008-11-23T08:45:00.000-08:00

Hi everyone,

Sam did get discharged from the hospital Tuesday night but after a few rough nights we had to make a emergency trip back to see her doctor. At home Sam was being given TPN at night which was causing problems. TPN stands for Total Parenteral Nutrition. It is a intravenously administered feeding through her port which then by-passes the stomach & digestive system. The nourishment goes into her blood system where it is processed by her liver, giving her essential fluids and nutrients. The TPN is custom made for her, adding the needed/required vitamins, based on her most recent lab work (blood draws). However the TPN was causing some severer nausea/dry heaves. Because of that, she was also unable to take any food or drink by mouth. Sam is also still having issues with fluid building up around both lungs. All this has left Sam very weak. The good news is they did send her home, but with more tubes, oxygen and riding on a wheel chair. Sam has been spending most of her time sleeping, however yesterday she finally had a few good hours and was able to get out on the balcony to enjoy some fresh air. She is working hard to try and feel better for her friends which are coming in tomorrow to visit.

Other people have been inquiring as to where to stay for visit. The most convenient place would be at: The Mutiny Hotel, which is located at 2951 S Bayshore Dr, in Coconut Grove FL 33133. www.mutinyhotel.com or 305 441-2100. If you want other options or help with the plans please let me know as I would be glad to help.

On my last post I mentioned the American Airlines mile program. Since then I have learned there is a added cost to donating/transferring miles. It would be a lot cheaper to buy tickets straight up then utilizing that program. Sorry to all who spent the time and effort trying to work that out.

Lastly is it true my beloved Blackhawk’s are actually on TV? Sam and I both look forward to coming home in time to watch them as they gear up for the playoffs. We really have missed the fun of hockey playoffs this past decade.

Lots of Love,

Chris

Doctors orders: change of scenery

2008-11-18T12:27:00.000-08:00

Hi everyone. I thought I would do Sam the favor and do an update for her. She has had it pretty rough lately. All the surgeries, 3 major ones, two minor ones (by comparison,) multiple chest tubes going in and out, through her ribs and all the other countless procedures, infections/fevers, tests and associated pains has taken its toll on her. She has been pretty weak, and not up to her usual communicative self. She needs her rest and to start eating again to get some energy back. So the doctors decided today, that can best be accomplished with a change of scenery, outside of the hospital. So the plan is to send her to our apartment. There she will continue to receive her IV treatments with nursing visits and return trips to the hospital every other day. We all are looking forward to this change of scenery.

As for me and Dolly, we are adjusting to the Miami way of life. We are sick of hospital food but some how we are managing to gain weight. As for the weather, yes we realize it's sunny and warm compared to Chicago but just so you all know we haven’t done any sunning yet. Once Sam gets out of the Hospital we hope to get on our balcony or poolside for at least an hour everyday, with Sam of course.

Next week Sam is expecting a few visitors right before Thanksgiving. Thank you girls for taking time away from your family on Thanksgiving break to see Sam. We all are looking forward to the visit. Jack Morgan it was great to see you. What a small world to end up seeing you visiting a relative 3 doors down from Sammy. It’s a testament to the transplant team here. The transplant Doctors here really are the best in the world.

Again I like to thank everyone back home, especially Alex for managing the household while we are away. Also Joe Wangler (and Bruce Sanders) for dealing with the damage & repairs on the house. (We flooded the day before we left, when Glenview received that record rain fall back in September.)

Tricia Melzer-Swaydrak I hear it was beautiful, and thank you Mrs. Siegert at OLPH for the “Sweets for Sam” fundraiser. All this help has/is really making a difference. As I’m sure you all know, besides trying to keep up with the medical cost, the money being raised is allowing us to be here at Sam’s side, where we belong. I don’t know how we would have done it without all of you. But mainly I need to thank Sammy. You are such a wonderful person and a joy to be around. Keep fighting! The hard part is past. Soon enough you will be back home with your family, friends and that dog of yours.

Lots of Love,

Chris

P.S. Congratulations to Bill Tellone on your promotion.

PPS. Keep the prayer going for Julie who Sam had mentioned in earlier posts. She has received her transplants but has remained in ICU suffering complications. You can find her story at http://www.caringbridge.org/visit/juliewerner.

PPPS. Several of you had offered airlines mileage to us. Now that I have seen the cost of flights around the holidays I have signed the family up with American Airlines aadvantage miles program. I still not sure how the program works, but I’m told you can transfer miles (with limitations) to anyone with a account number. Just contact one of us and we can supply you with the numbers. Thanks

Still Here

2008-11-11T13:16:00.000-08:00

Hi everyone I'm still here in the hospital. The surgeries went fine, and it looks like Thursday will be when I'm getting a new port put back in on the other side. I still feel pretty crappy the fevers just finally ended a couple days ago. I'm on antibiotics for now. And also I have no appetite but have to force myself to eat the crap hospital food if I don't want a tube down my nose. Thankfully my parents bring me food too. Sorry so short but thats all for now. Can't wait to get out of here.. almost been 2 weeks already. I want to get out and get pumped for my visitors soon :)

lots of love

Sammy

apparently I'm a surgery fiend!

2008-11-04T14:42:00.000-08:00

So tomorrow morning at 8 am....back to the OR. This time at least 1 of the reasons I'm going is normal and on the right path. That part would be the opening of my ostomies. I will still have to bags on both sides, but this time #1. they will both drain, #2. they wont drain as much because #3 part of the food that passes will continue down ..down...you get it. It took me a long time to figure this out; I actually only totally understood today when my doc drew a picture for me, so I tried to draw one for you...sorry about the handwriting, I had to write backwards so that when I took the picture on my computer it would be forwards. If you click on the picture it'll get bigger. Also the reason I'm here is b/c of the infection (thus the fever) and its coming from my line. So they're going to take one last look at my blood cultures tonight and tomorrow early to see if they need to take my line out or not. So thats the plan, I shouldn't have to go to ICU just recovery room for a bit then back up here. Oh yay

Lots of love,

Sammy

ooh geeeeeeeeez

2008-11-02T08:06:00.000-08:00

First off I want to thank everyone used the power of prayer for Julie..she got her surgery and came up the day i left and ended up in my room! It was kinda funny...ok not funny. Today she went back down to the ICU though. So please, keep up the prayers.

As for me on Thursday night I woke up at 2:45 freeeezing and with a high temperature. I thought it might had been dilaudid withdrawal, because I'm weening myself off it, and my first goal was to sleep through the night (besides having to "tinkle" -kid friendly blog! and also to empty my ileostomy because the TPN runs at night .) I was doing not so bad sleeping through the night. So I took a dilaudid and when my temp kept rising I was getting more and more nervous and anxious. Through my panic i thought I was short of breathe but I think if was getting nervous and thinking about it too much and thankfully i have ativan for extreme cases of anxiety and i figured this was one. It actually calmed me down a lot, i was breathing ok. Once we got the the ER waiting room we only waited about 10 minutes. I was told by someone who works in the ER she's seen people wait for 30 hours. I'd probably feel better by then anyways. So anyways once we got up here finally and I've found out that i had a positive blood culture so I have to get some antibiotics for a couple days. We'll see how that goes. Oh also the vertical stiches I have they took out every other one! I'm on my way!

Lots of love,

Sammy

Had a Great Weekend :)

2008-10-27T11:17:00.000-07:00

So as you may know I had 3 visitors this weekend ..my sibs! It was sooo great to see them. We had so much fun playing games, talking, and tony enjoyed watching my stoma. What a boy! They unfortunately came when the weather wasn't the best, which we were hoping they would get to see the sunnier side of Miami. But oh well, they were here and we were happy to see each other. Now they get to go back to trying to train that crazy puppy that they let run wild :) The best part of today is they said I should be out tommorow or Wednesday! They're organizing all the different things that different companies take care of like one is just for meds, another for the nurses, another for ostomy supplies, and one for regular supplies. Geez right? They made it confusing with all the different companies! We also need to make sure they go to the right address. PLEASE NOBODY SEND ANYTHING TO THE 2329 SW 17TH TER. WE MOVED AND WON'T GET THAT MAIL ANYMORE. If you want to know the new address contact us, or email me, or w/e... I wish I could just put it up but you know too many stalkers chasing mom. I've started to eat a bit more food now (so sick of jello; every single meal they serve me is jello and juice) so we have started to buy some things. I've eaten a bit of soup and some mashed potatoes. I have to really make sure I walk after these ...that whole gravity, 'idiot' intestines thing. So this might be the last message for a couple days until we're settled into our new place. So don't freak out that there probably won't be a post for 3-4 days we've got plenty to do. Remain Calm, and Take DEEEEEP breathes. That should work!

Lots of Love,

Sammy

P.S. Did I mention I'm sick of jello which I never thought could be possible?

A little message from Sammy's faaavorite sibling :)

2008-10-24T14:05:00.000-07:00

Hi everyone! It's Alex, and I'm here with Sammy and the whole fam in (not so sunny) Florida! I'm shocked at how amazing Sammy looks. I was expecting her to look, well, like she just had a 5-organ transplant. But instead she is looking incredibly healthy and has some awesome battle scars to show off. It's so great to be able to spend some time with her. Oh yeah, and I guess my parents too :)

Recently, I was contacted by Tricia Melzer-Swaydrak. She informed me that she is singing in a spiritual concert at the Glenview Community Church, which she has done before. The concert is free, but there is a free will offering during the concert to benefit a cause of her choosing. After hearing of Sammy's successful surgery, she so kindly asked if the money raised at the concert could go towards Sammy's fund. The concert, titled "Ain't-a-That Good News," is on November 2nd at 5:00. You can find out more information at:

http://www.gccucc.org/campaigns/ATGN/ATGN.html

We hope a lot of you can make it! And on this note, Tony's CCD teacher came up with a fundraiser called "Sweets for Sam." They are selling candy, t-shirts and armbands after the Saturday, November 1st, 5:00 mass at OLPH, and again after all the masses on the same day as the concert-- Sunday, November 2. Don't mix the events up though... 2 different churches! Carisa, Tony and I are going to be quite the little church-goers that day!

I know Sam and my parents have given their fair share of blog thank-you's, but I just want to say again how amazing all of this is. Without these fundraisers and the incredible generosity of so many people, we wouldn't have been able to fly out here for the weekend (let alone many other things!) So thank you very much everyone for all that you are doing to make this situation easier!

But enough of this, and I'm sure you want to be hearing from Sammy anyways! I'm sure she'll update you soon, and hopefully have some great things to say about our weekend all together here in Miami!

XOXO,

Alex

Here's more!

2008-10-18T16:07:00.000-07:00

Hi everyone! Sorry I didn't finish more off last night. I'm not going to try and remember what else I wanted to say then, because I'm living life day by day, and always looking forward so I'll write about my day today. Since they took the NG tube out they had me slowly start a liquid diet. I didn't have much: couple bites of jello, a little broth, and juice. Yesterday I handled it fine but barely had any because I know my body needs to adjust. So this morning I woke up really nauseas which is expected. The stomach acid that builds up isn't being drained by my NG tube anymore, and it still doesn't know north from south. The only real way to fix that is walking. So after I tried some meds in the morning with not much relief I finally forced myself to walk despite how I felt. It really does help. It's so weird because you feel soo horrible, and walk, and then you feel better. So I walked twice today and they helped, my stomach felt fine afterwards. I also did some balance work with the physical therapist. He said we did things that are usually outpatient work, so he's thrilled with how I'm doing. Now that I'm breathing easier everything is becoming simpler. The more I walk also, the more I'll be able to tolerate food. Today another great thing happened. I've had a 'central line' in with many places to hook up IV's but since I'm starting to be on less things we're finally able to move forward from that. Central lines can also be dangerous b/c if they're left in too long you can get an infection and thats bad bad news that I would NOT want to deal with. Since I still have my double port from chemo we were able to use that! So today we took out the central line (a big needle in the side of your neck that is so uncomfortable and constantly moves and feels horrible) and accessed my port. I might also need a peripheral IV (in my arm or hand) but that is no big deal at all.

A few things: I'm so grateful for how well my siblings are doing at home. They are acting soo mature and handling everything by themselves so well. They amaze me and make it easier b/c I don't have to worry about them, I know how great they're doing. Also thank you for everyone helping them out with everything, especially food. I love them all and can't wait for them to visit soon :) Also obviously my parents have been so great. They both come everyday and stay all day. I know it has to be so boring, and maybe a bit of slave work.. haha woops.. I constantly need things that they help me out with that I'm not able to do myself. Also there were 2 nights recently that I didn't feel comfortable by myself at night and they each stayed over 1 night in the uncomfortable hospital chairs, and barely got any sleep. My dad even stayed over the night that turned into his birthday.... HAPPY BIRTHDAY DADDY!! Speaking of him, we're going to watch the hawks game together now on the comcast thing we bought so we can watch them on my computer, since we don't get them out here. It's really a bummer that we don't get to see the bears games. We found a site where it updates every play what happened, but of course thats not the same. But hey, I guess I have some other more important things to worry about. :) Thanks for all the support as usual, from letters in the mail (uncle Joe that was the best ever) to packages, to friends at U of I throwing fund raisers for me. Can't tell you how much it means.....

Lots of love,

Sammy

Screw Great America, Talk about a RoLlER CoaSTer rIdE!!!

2008-10-17T13:28:00.001-07:00

Hey everyone... its me again :) I'm not sure how or why but this morning I woke up a new me. I've decided (even though I can only control so much) that today is a turning point. Today was the first day since my surgery (#1) that I've been able to sit up and get out of bed myself, which sounds like nothing but is a huge deal. I've had multiple chest tubes placed up in my ribs (on both sides) which have been draining a lot of fluid that is building up between my lungs (around my heart) and on both sides of my lungs on the outside. The fluid is finally almost gone and my breathing is SOOOO much better. I've been getting short of breath and having trouble talking and breathing and just moving around. 2 days ago when I tried to walk I made it about 30 steps, and today I made it all the way around the floor...Twice!! It felt so great. It wasn't even hard. I'm working with the ostomy nurse to learn how to change those bags myself, which is quite a process! I've finally gotten over how gross it is and have become very picky with keeping them perfectly clean. She was laughing today saying she wished she could have taken a before and after picture.. I spent about 20 just getting it clean. Earlier I had a scope (they put a camera in through your stoma, you don't have nerves here it doesn't hurt just is uncomfortable pressure) and for the first time it wasn't even uncomfortable, and it looked perfect on the big tv as usual. Lemme tell ya, seeing your teeth on the camera at the dentist is one thing but checking for perfection in your new intestines on the screen is another!

They've taken out my NG tube finally which I'm soooooo happy about. It's such a huge tube up your nose down and is uncomfortable especially moving it (which they had to do.) They usually replace with a smaller NJ tube which goes only to your stomach to feed you. They are going to try and see if I can handle eating without the tube, which is exciting. I have to go very slow though. Today they said to start very slow and I'm going to try and eat some chicken broth. The problem when you get new intestines is, as Dr. Moon calls them, IDIOTS! They don't know which way is up and which is down. The only way to 'train' them is by gravity so I have to try and be standing as much as possible or sitting very straight (especially when eating.)

Theres much more I'm going to type in this blog but I am actually going for a walk outside right now as time permits, so when I get back I'm going to add the rest. But all is well everybody stop worrying 'cause I wasn't posting! :) I'll be back

BACK AGAIN!

A little later than I had planned...too tired.. so ill update hopeflly agan if have another good day

lot s of love

Sammy

long road

2008-10-16T08:13:00.000-07:00

I know everyone is concerned because we haven't written in a while, but complications seem to be keeping Sam from feeling any better. These are complications caused from the surgery itself. The actual transplant working perfectly! We keep hoping that she will be feeling up to posting her own entry, but she's not. This road is slow and long. Sam sends her love and will post as soon as she can.

Lots of Love,

Dolly

Back in O R

2008-10-09T10:04:00.000-07:00

Just as Sam started feeling better this morning we gave her the bad news that she had to go back into surgery again today. Like, in about an hour. She took it well. Her response as they wheeled her away was " this is getting really old". Sam was pretty weak but the Doctors said she is strong enough. We decided not to tell her last night in attempt to let her have a better night.

The reason for going back in, is that the doctors while doing an examination of her removed organs found some cancer cells in a margin area that they didn't expect. So to be safe they are going to clean up and remove tissue from that area ( which is located behind her pancreas ).

Sam was taken into surgery about 9:00am. Dr. Tzakis informed us about 1:00 pm that his part of the surgery went well and now Dr. Moon will finish it up. He stated there was no visible cancer in that area of concern, so hopefully it was just some type of cross contamination of the removed tumor up against her tissues.

So now it will be back to the SICU for a few more days. Then with a little luck there won't be any more surprises and she'll be able to rest comfortably on the 15 floor with her cell phone in her left hand, her I-touch in her right hand, and her Mac on her lap. Lots of Love, Chris & Doll

Back in SICU

2008-10-08T07:22:00.000-07:00

First of all Sam's new organs appear to be doing Great! The bad news is Sam is suffering from the complications of having major surgery. First it was a pneumothorax, where they had to put a tube in her side to relieve pressure on her lung. However she was still having increasing pain Sunday night and Monday morning. Then early Monday morning to try and relieve some of the pain she thought she try and take another walk. As soon as she stood up she had a little episode including difficulty breathing. That got the attentions of a lot of people and she was rushed back into SCIU. The doctor were concerned she could be suffering from a pulmonary embolism. After numerous tests and scans they fortunately ruled that out. They believed the difficulty was the result of fluid build up. Tuesday morning the Doctors went back in for what they call a wash out procedure. They drained the fluids and did little repair jobs on the leaks. While they were in there they cleaned and checked out the rest of the system. She should be good to go for another 100, 000 thousand miles. The Doctors informed us that this was a routine procedure and one of many little set backs we will experience over the next few months. Sam's surgery lasted about three hours and she had a pretty miserable afternoon and night. We haven't seen her yet this morning but she should be doing a lot better. Well that's the short of it.

We will keep everyone posted.

Lots of Love, Chris and Dolly

I'm Back!

2008-10-05T09:16:00.000-07:00

Hey everyone.. its me again :) It's Sunday around noon and my parents are here keeping me company as usual. I don't know what I would do without them. Being in the hospital in any situation is not fun, we all know that but- they're here everyday rooting me and helping with things that sometimes aren't so fun. I look forward to seeing them everyday. It was especially helpful in the ICU because there wasn't much to do there besides lay around and feel bad for other sick people that weren't doing as well as me. It was kind of like watching ER without turning on the tv. Anyways, they also were able to print me out some of the blog comments and hold them up for me to read in the ICU when I was trying to be distracted during on the my scopes. They do this frequently to check if the new organs (mainly the intestines) are being accepted as they are supposed to be. The blog comments were so helpful and everybody is so kind and sweet and supportive as always. I can't thank everyone enough from the bottom of my heart. Also someone I will never ever be able to thank enough is the donor family. I'm actually kind of speechless and unsure of what to say on this topic, its still a rough one for me to deal with but I obviously wouldn't be here without that contribution.

On the lighter side- it's nice to be up in my own room out of the ICU. The ICU doesn't really go to sleep so you get better rest up here. The other night I woke up at 2am and I actually wasn't sure if it was 2 am or pm until I asked because everything is always up and moving. I'm also able to get back to my beloved computer up here :) It's nicer to because my parents didn't have much room to move down, and now they have more space to move and be comfortable up here. This morning I walked around a bit with the physical therapist and I plan to again once more with them before I have to get pre-medicated with benedryl before one of my drugs (it makes me take a nap) :). For the next few days nothing new with happen. We will continue to make sure I get up and move around. It's also VERY important for me to keep filling my lungs up. There is this small breathing tool that I use to help me fill up my lungs. This is super super important to do and I have to make sure I'm constantly doing it all day long. You can develop many complications that can be very serious with your lungs that would be very problematic.

Anyways- this is about all the info I think I can give right now, and pretty much all you feel like reading! I hope this gave everyone a little hello from me and update on whats new. I'll try and put one up again in a few days. Also I met a really nice person here named Julie before my tranplant, and she's also waiting for some organs herself. I would appreciate if everyone can take a break from my prayers and send some lover her way. I hope to see her up on the floor with me soon and we can take walks together :) Once again thanks for everything everybody,

Lots and lots and lots of love!!!!

Sammy

tuff cookie

2008-10-04T04:58:00.000-07:00

Friday Sam showed the doctors how tough she can be. The Doctors told her the best thing she could do for herself right now is get out of bed and let gravity do it's thing. Sam who has been afraid to move because of the pain caused by moving, actually got out of bed and walked to the end of the (short) hallway and back to her bed. Then with tears coming down both of her cheeks she surprised us all and said "LET'S DO IT AGAIN " and she took another short walk. I think she actually felt better afterwards. It amazes us everyday how such a sweet kid can be so tough.

Lots of Love, Chris & Dolly

Celebrate Sammy

2008-10-02T12:46:00.001-07:00

...Even though Sam is not out of the woods, and has to deal with all the transplant pain, and complications, we took a little time to celebrate what has happened. We are so ecstatic the tumors have finally been removed. As we've know from the beginning, the only chance for cure was to surgically remove the cancer. After several failed attempts, this has finally been done! Can you believe it? The one thing the surgeons didn't remove was her sense of humor. Last night with a tube down her throat, fighting pain and discomfort, she was still able to make us all laugh with the things she was writing down on paper. Also, when we first saw Sam after surgery, she had requested, and was watching the cubs game!!! (Well, sort of...)

When we saw Sam today, she was doing well, (other than a pneumothorax)

She asked us to make sure that her cell phone was charged for her when she gets it back.

Sam is looking forward to reading all the blog entries when she is able.

Thank you everyone for everything. Take some time out of your day and celebrate Sammy with us!

Lots of Happy Love, Dolly & Chris

New Beginnings

2008-10-01T13:40:00.000-07:00

Sam got out of surgery about 1:30 today. She did awesome. We are told the next couple of weeks are going to be a roller coaster.

Again, the Dr.s said there was no longer any visible sign of cancer.

We will of course keep you posted on things to come.

lots of love

Dolly

8:31 AM

2008-10-01T05:31:00.000-07:00

We just spoke with Dr. Tzakis, the main surgeon. He said all visible signs of cancer have been removed. Sam is now cancer free! He also said the organs were perfect.

Our thoughts and prayers continue to be with the donors family.

Sam still has many hours to go.

Lots of love

Doll

6:30 AM Eastern

2008-10-01T03:43:00.000-07:00

Good morning!!!

The early morning report from the operating room is that "everything is going very well"

Transplant!!!

2008-09-30T22:13:00.000-07:00

Finally...Sammy went in a few minutes after midnight. We were told that it is approx. a 14 hour surgery. She handled the whole day with courage and laughter. When we asked her what could we do for her, the answer was always "you can give me a back rub if you want"

We were told by the surgeons to go home and rest. Sam will need our strength tomorrow.

lots of love,

Dolly and Chris

...Still waiting...

2008-09-30T14:51:00.000-07:00

...just wanted to let you all know that it will still be a while, another 5 hours or so. Hey, the good news is that Chris is about to land in Miami!

Lots of Love,

Doll

A quick update

2008-09-30T10:11:00.000-07:00

Hi everyone, this is Dolly. Sam and I are still here waiting for transplant. We are waiting to see if the organs will be suitable for her. The Dr. had to fly to Tampa, so it will be a while still. Sam is waiting patiently as usual.

Unfortunately Chris is not here. He flew home for a quick one day trip to take care of a few things at home. He is trying to get back here as soon as possible.

We will keep you all posted as news becomes available.

Keep praying guys!

Lots of love,

Dolly

OMG

2008-09-29T23:58:00.000-07:00

It's 3 am... don't have long. I just got the call. Possible donor. Looks good on paper don't know until the team actually gets there checks out the organs. I'm leaving now. I'm in good hands. Love you everybody.. I'll have someone put a post up as soon as possible. This would happen to me 12 hours later wouldn't it? I have so many emotions I'm not sure what to feel but I know it feels right. In about 20 hours i'll have 5 new organs to play with for the rest of my life that are cancer free. It can only go up from here. All my love ALWAYS

Sammy

How about a better update?

2008-09-29T09:13:00.001-07:00

So after we did the update this morning we got some more updates that are long overdue...

INSURANCE APPROVED THE SURGERY

AND

ILL BE ON THE LIST TONIGHT!!!!!!

We are sure plugging along the path towards a back to good Sammy. My Nonnie who recently passed sure is looking out for me (Happy Birthday Nonnie- love you, love you, love you). Also Happy Birthday to Gia! My parents have been so great here I can't even tell you. They will walk across fire for me if my gatorade is on the other side and I'm thirsty. If they weren't them- I wouldn't be here. Well.. here here.. you know what I mean! So I gotta start getting myself 'pumped' for this. When I was going to have those other surgeries I was not scared or anything because I kinda tricked myself into being excited. I gotta do that again, though I'll admit I'm not yet. It's scary knowing that NOW I can get the call anytime to come get a surgery that will change my life. But do what you gotta do right? That's what Nonnie always said! When its time to play you play, when its time to switch out 5 organs- YOU SWITCH OUT 5 ORGANS! Why hurt yourself? :) Today when I was getting some labs drawn (and by some i mean 15-20 tubes filled AGAIN.. those friggen vampires) I chatted with 2 different post liver-transplant patients. The first man I talked to I said I was put on the list today and he said he got the call the DAY AFTER he was put on the list. Crazy! The second woman (also liver) got her call 11 months after she was put on the list. There are things that go into account like urgency with your health and things.. but see you never know. With me.. I go to the top of the list, I'm urgent... it's gonna be fast. We're thinking this week or next. It's gonna all happen so fast. The only thing thats not gonna go fast is how my parents will feel during my 10 hour surgery. I know that's going to be nerve-wrecking.. but Dr. Moon (my transplant doctor I see everyday that loves me) said the surgery is the easy part. Rejection afterwards is where you run into complications. Once I'm out I'll be in the ICU a couple days and pretty much out of it and sleeping, with pressure cuffs on my legs to keep the blood flowing. After I'm moved the the transplant floor (where I was before) and this will be the roughest part of this whole process. You endure pain that reduces after 2-3 weeks, but you do have it for a while. During this time I unfortunately can't be cuddled and spoiled in bed. You have to get your naked hospital butt that is enjoying the breeze from your un-tied hospital gown (don't you wear gowns to like... balls?) and walk around. You walk and walk 'till you're crying and then when you get back you sit in the chair not lay in the bed. My parents will probably have to physically lay in the bed so I can't because I do love laying down. It will get easier after those first 3-4 weeks and the more I work hard the sooner I'll get out (assuming I have no post-operative complications). I love everybody so much and the support I get from EVERYONE (including all you facebook messages that I am slow at keeping up with.. but thank you with everyone you know who you are) is sooo helpful. I can't tell you how much you all mean to me.

Love you, Love you, Love you-

Sammy

Miami update

2008-09-28T15:28:00.000-07:00

Hi everyone, I thought would do a quick little update for Sam. The last two weeks Sam went thought numerous testing procedures at the University of Chicago Hospitals and then a lot more at the University of Miami Hospitals. Then at the request of our insurance carrier ‘Cigna” they wanted a few more ultra sounds, CT scans and a PET Scan. The good news is that Sam passed all of their test. No new problems or metastases were found anywhere. Sam was then released from the hospital after they were able to get her off a lot of her pain med’s. We are now renting in suburban Miami, while waiting again, for approval from Cigna. Once they approve it, Sam will go (right to the top) on the Donors waiting list. We hope to have the organs/graft before Sam needs chemo again. She can probably go a week or two before pain gets to bad. So hopefully it will happen soon. We miss everyone back home, including XRT, the Cubs, da Bears and the Hawks. At least once the playoffs begin we will be able to follow the Cubs on TV. Haven’t heard anything about the Sox’s from down here what’s up with them?

Thank you to all of you who are checking, feeding and taking care of our other kids and house. As you all know we couldn’t be doing all this for Sam without all of you. Lots of Love ,Chris

Come on Sam Put up a new post already will ya?!?

2008-09-24T03:32:00.000-07:00

Hey everybody.. so my last chemo at Chicago sometimes has the side effects of hair loss... but we didn't know if it would happen for sure or not. After 2 weeks of beautifully growing hair finely groomed into a mohawk that my parents loved oh SO much.. we thought I was keepin it! But alas.. 2 nights ago I woke up and there was some hairs on my sheet which totally grossed me out and I was getting all mad 'till I thought.. hmm.. could that be me? So I did the hair test (run my hair through my hands pull and see what happens) and well.. you can figure what happened. I turned around to check the pillow to make sure and yes... it looked like a dog (not Bella of course because she's my perfect puppy who doesn't shed) had laid on my pillow. DANG IT! That's okay though. The thing with me is I CAN'T STAND when my hair is falling out, it grosses me out and is nasty! I just want it off asap, so my parents were nice enough to go buy my request.. a buzzer. Unfortunately they couldn't find the spray colors I was hoping for.. (a nice pink or blue would have done).. Target has finally failed my mom. But anyways.. here is a before before (pre mohawk) picture since you saw my mohawk in the last one.... (that's Dasha if you didn't know.. and if you don't know who Dasha is you're slacking)-

Then here is what we created.. a REAL mohawk! No 'fohawk' b/c the sides weren't still there... oh man .. are you getting scared yet or what?!

I think even I got a bit scared when I saw what we made!....(you can click on the picture to make it even bigger to view!)

But don't worry .. we only had this real mohawk for about 2 minutes for some quick pictures and laughs. It wasn't perfected unfortunately because the buzzer we were using was totally weak and it was taking FOREVER to buzz my hair off. But we were also on a deadline because I had a catscan lined up, and I still had to buzz the rest, then shower before the catscan. So we buzzed the rest off and I got cleaned up.. and here's the end result...

AHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!! MOM YOU MESSED UP MOM YOU MESSED UP I LOOK SCAAAAAARY!!!! YOU TURNED ME INTO A MOOOONSTER!

oh..oh...pheeew. Goodness I got scared there. That's just a picture of Alex. That made me nervous. (I'm gonna get beat up for this one)...

But really it's all off now but the buzzer was so lame the buzz job is pretty spotty and ugly and you just don't get to see yet! Imagine if a 3 year old tried to buzz someone's hair and left a few spots...it's kinda like that. Not my mom's fault of course.. just a very weak buzzer! I'm going to have a new update soon because I should have some type of news to update you all with in a few days. I figured I would put SOMETHING up now to keep people calm because I hear I create quite an uproar when I don't update the blog frequently enough. Sorry everybody! Hope this gave you a quick laugh and reminder that I'm still the good old me besides a rough transition into a new place. Soon you'll get to see pictures of HOPEFULLY my parents and I .. maybe even in the new place we rent? That would be great! As a last note I would like to mention that my sister Alex is the most beauuuuutiful girl I've ever laid my eyes upon and this blog was a joke only and I wish I were as lovely as her. That saves me right? I hope so. Hope everybody back in Chicago.. well... or wherever you're from...is doing well. Thank you for the support as usual out here in Miami. I will update soon with news... but for now my tummy is grumbling like you wouldn't believe because I can't have anything to eat or drink in preparation for my PET scan this morning. I miss everybody back home so badly and it makes me want to fight harder and work my butt off once this gets done so that I can get home quicker. I especially miss Carisa, Tony, Alex, and Bella back home but I know they're being taken care of. But I'd love to beat them up.. I mean give them big hugs! Until next time..

lots of craaazy love,

Sammy

P.S. Let's have a blog contest! First person to post a comment about what's different in my recent new mohawk pictures (besides my mohawk) wins! Good luck! .. oh.. there's not a prize. Sorry. Dad (and mom) you're not allowed to comment and win you already know. You lost the contest badly when I gave it to you in real life anyways!

P.P.S. One last thing in this terribly long blog... I was looking at my 'cluster map' on the left side of the blog which shows where people are viewing from... who went into the middle of the ocean and then looked at my blog?!?!?! And also did you use a floaty raft with paddles or something more sophisticated? Just curious

Boy was I spoiled

2008-09-19T10:40:00.000-07:00

Hey everyone... so we're here- we made it. The med-vac was pretty exciting. Besides the first ambulance drivers we had that strongly reminded us of cab drivers we had a smooth ride. It took a while up in the room to get settled into their stretchers and switch pumps and so we finally left the Chicago hospital around 11 or so. We were ambulanced to Midway and took a small jet (the picture above) to Miami. Then again took another ambulance up to this hospital. It was pretty crazy the day we left b/c we had been hearing rough news all day about how a bed wasn't open and we were going to have problems b/c my medvac was going to expire and trouble with insurance etc etc... and then 5 minutes later my nurse comes in and goes 'um... they found a bed!' It was pretty nuts. So the transition here is very different from Chicago but I'm attempting to practice using all my patience to understand that things are done differently in different places and Comer 6 really is like no other. My parents seem like they have a nice hotel they're staying at for now and soon my dad will start to get at looking at apartments or condo's or w/e we will be staying at long-term. We're hoping that they get me on the list soon, and everything will get rolling. Once I'm on the list its of course a guessing game to how long but hopefully and usually it doesn't take too long to get organs here in Miami. There's no promises that it will be any time soon though.. you never know. The transplant doctors always seem to be so busy here.. staying for 14 hour surgeries throughout the night and into mornings. They sure work long and hard hours. Once we hear any news about being officially approved, or getting on the list, or anything like that we will be sure to post. For now, not too much new stuff is going on. Thank you so much for everyone back home helping out with the family and puppy (um.. don't forget- her birthday is september 30th I expect a full party for her!) So I'm going to keep on practicing patience here while adjusting to many many changes and hope that we get put on the list as soon as possible.

Lots of Love,

Sammy and parents

LEAVING FOR MIAMI RIGHT NOW!!!!!

2008-09-16T16:44:00.000-07:00

"All my bags are packed, I'm ready to go

I'm standing here outside your door

I hate to wake you up to say goodbye

But the dawn is breakin, it's early morn

The taxis waitin, he's blowin his horn

So kiss me and smile for me

Tell me that you'll wait for me

Hold me like you'll never let me go

'cause I'M LEAVING ON A JET PLANE

don't know when i'll be back again

oh babe, WE COULDN'T WAIT TO GO!"

-John Denver, Leavin' on a Jet Plane

Roller Coaster Ride

2008-09-12T18:26:00.000-07:00

Today was a good day. Yesterday was horrible. -we won't go there.

Today Sammy is awake and aware....but she asked me to help her write this (basically I write this, and then she goes and changes it all- yeesh). They gave her a stimulant to help counteract all the other stuff they were giving her which was basically making her unconscious. Its really helped. Everyone keeps telling her the strange things she was saying and doing. You also may have noticed her last blog attempted...well she just fixed it...oops. And she wanted to say sorry to those of you she may have called at 4 in the morning. She's had no sense of time. As Steve Martin in The Jerk would say, "4 days seemed like 1 day, and 7 days ..felt like 2 days." She cant believe she's now been here for almost 2 weeks. She says it feels like about 3 or 4 days. Anyways things are really moving now. She's undergone numerous tests today and has been scheduled for a lot more on Monday. The plan is that she will be using medevac to get to Miami ( Lear or Gulfstream ) on Tuesday or Wednesday to finish her evaluation. If Dr. Tazkis in Miami thinks he can still do his thing, then insurance company sounds like THEY WILL APPROVE THE PROCEDURE!!!! YAY! So it could happen fast. She may not even get to go home before Miami, she may go straight from U of C. Once in Miami, its just waiting for the organs- which should happen fast. When you're on the list for a multi-organ transplant you to right to the top :) - yipee! So coincidentally an episode of my favorite (this is Sam now of course) show Spongebob is on and it's about Roller Coasters so I see this as a perfect time to finish. I hope that everyone has a good week, and will have a great weekend-from the both of us!

Lots of Love,

Sammy and Chris

A Short Hello From Me

2008-09-10T23:27:00.000-07:00

Hey everyone... I see that my Dad has been doing a great job keepin everyone updated. My memory once again is foggy of this stay. I remember coming to the hospital tuesday morning rolled up in a ball b/c of severe pain on my right side. They started with the heavy meds and there went my memory. I guess the next several days I actually got up to the infamous room 14 with the shiny blue floors(ooo! yaaay!) Through x-rays we've found that I have fluid in my lungs and it needs to get OUT! But i should go...falling asleep

lots of love,

Sammy

A step in the right direction

2008-09-07T09:24:00.000-07:00

Some good news. We have made some progress with the insurance company. As you probably know our insurance company denied coverage of any steps towards Sam receiving the needed transplant. Well while we are appealing that decision, a Cigna rep. called and approved benefits for Sam to go back down to Miami and be officially evaluated/examined for the procedure. That’s a start.

This coming week we will be trying to coordinate everything to get the needed appointments in Miami. However Sam is in no condition right now to travel. She also just had to start another round of chemo in hopes to knock back the liver tumors growth, which should also, hopefully relieves some of her pain issues. He current chemo is scheduled to end Wednesday. We hope the chemo along with the associated side effects won’t delay any of the evaluation steps. Then with a little luck and a lot of hard work hopefully everything will be approved and arranged to get this done within the next few weeks. We are not giving in…it will get done.

To those of you that have been trying to call, text or e-chat with Sam. Besides the "do not operate heavy machinery warning" on her medication they should include “ or try to operate or stay awake long enough to use any modern telecommunication devices” . Give her a little time to get back to normal (level of consciousness) and she’ll get reconnected with you all. Thanks for all the calls and offers of help and support. Lots of love, Chris

needless administrative delays

2008-09-04T12:24:00.000-07:00

Hi everyone. I thought I'd give a little update for Sam since she is back at the UCH without internet access. We are still fighting the fight which at this time is pain and City Hall/Insurance. Sam was admitted into ICU Tuesday morning for severe abdominal pain. ( which is sad because the insurance is denying coverage at this time saying they wont approve her transplant until she has abdominal organ failure. Well her organs definitely are not functioning right which is causing her a lot of pain and suffering. To me that is organ failure )

The ICU staff is starting to get her pain under control ( with high doses of narcotics ) so in the mean time her doctor decided to go ahead with a new round of chemotherapy. It was hoped that she would of been in Miami right now and not needing this round of chemo. The last chemo type was not effective enough with her liver so a new type will be decide on today and tried.

As for the insurance battle we had hoped my employer would of given the approval for the procedure but yesterday we learned that they took the human factor out of it and recently gave away the control of our insurance stating, it's now out of our hands, and up to Cigna. (Thanks for making me wait and jump through the hoops first). The denial decision at Cigna was made by Dr. Stephan Crawford, who was in the middle of the firestorm for Cigna when they declined coverage for Nataline Sarkisyan. (Google it). We have faith that the life saving procedure will get done however we our tempting fate by these needless delays giving the cancer a chance to spread to another organ which can take away this only option we have left. We have this window of opportunity and hopefully with a little help, we will get this done for Sam, and all of us that love her so much. Thanks, and lot of love, Chris

Waiting ...still waiting...

2008-08-25T11:37:00.000-07:00

Hey everybody. I know waiting to hear news is hard, and sometimes we need something to pass the time.. well at least I do. This is something I came across that really had me laughing and I thought I'd share in case you need something to do ever as well. This webpage is www.yearbookyourself.com . Here's some pictures of me throughout the years..(they are supposed to be 1960,1966,1990, and 1996) Haha.. hope this gives you a laugh and helps ease through the waiting!

Lots of love,

Sammy

Hey all

2008-08-12T08:31:00.001-07:00

pre-note here: I thought I'd give you something fun.. its a little timeline of my hair lately! The pictures are from a few weeks ago till today. :) enjoy

Hey again everyone. Just wanted to say that there has NOT been any news yet. I've been doing my maintenance chemo and to be honest it's starting to kick my butt. I've been pretty sick lately, but have been able to do a few fun things. Mostly though, it's my bed and my remote for me. Anywho, just wanted to say that we haven't heard anything 'cause I bet you're anxious to hear news. lots of love

Sammy

Ok fine I'll type the super long informative one finally!

2008-08-02T12:18:00.000-07:00

Hello everyone! Been back from Miami for a couple days catching up on rest, sleeping toooons. I think the side effect that has hit me hardest from this last chemo is fatigue, I just wanna sleep all day! I still get sick and nauseous, but not as often as I wanna take a nap, thats for sure. Miami went well, though nothing was COMPLETELY determined, no official answers, so don't get too excited. A lot was discussed and its headed in the right direction towards this enormous surgery, but its not 100% go yet.

At O'Hare airport we started our trip, thanks to Mrs. G for the ride so we got dropped off where we needed to be so that I didn't have to walk too far (i get tired.) We pre-ordered a wheelchair and it ended up being a bad decision as it caused us to be so late we barely made our plane and was a bigger hassle than walking it would have been. Oh well... so after a lovely pat down for weapons since I'm connected to something that will make the detector go off, we got on the plane. Miami was very different than what I'm used to here. Wow am I spoiled! First of all I'm glad I don't live in a city that kind of smells like garbage when it gets very hot. But it wasn't all awful, we got to eat at Emeril's restaurant (it was in our hotel even) and got some lobster tail fresh from Florida, very delicious! But on to the medical part..

So the hospital in Miami is what most hospitals are like.. (which I've never really spent time in.) I'm used to the very clean, super new/nice building at Univeristy of Chicago and I've always had my own room with my huge plasma. When we went for our consult on Tuesday we were in the hopsital for around 5 hours, lots of waiting, even though we only talked to the doctor for about 30 minutes. Here is what we basically have come to:

The surgery is on besides 3 "speed bumps." These could just be something that makes it more difficult, and some can actually put the surgery off. The first is the obvious- insurance. They still haven't hopped on board and this is quite an expensive surgery, as they are transferring 5 organs all together into me. (I found out the donor can be as light as 40 pounds and the organs grow with you-wow!) The other 2 obstacles are medical: one is the small cell that was planted which stopped my first whipple surgery. Dr. Cohn doesn't think it should be a problem we've never seen it grow and we hope to just have it removed during surgery if he is able to. If he can't, he will not do the surgery. The last hurdle is some small nodules in the lungs that Dr. Cohn saw on some slides that she is unfamiliar at looking at. They were scans ordered by the Miami doctor that I had done here, and my doc here isn't used to using this type of contrast, or using this view, or something like that, which makes her not familiar. She said they look tiny and might not even be anything. The Florida doc said he didn't even see them when he looked at the same scan, but we are going to keep an eye on them in the mean time, if they are in fact there. Those are the obstacles besides that- he wants to do it.

When you are getting a multi-organ transplant you go to the top of the list, which is so comforting. They said in Miami they have never lost a patient because they couldn't get the organs. There are not a lot of places that do multi-organ transplants, so theres not a lot of competition for me "on the list." The doctor I have is honestly known world-wide for his work, he is the pioneer in this, and amazing at what he does. I'm confident with him working on me, and he is a very nice doctor to talk to, with great bed-side manner. He gave it to us straight how it is, and comforted us with how down to earth he is.

If we are put on the list they can call us any time and say we got the organs, be here in 6 hours. So, if things are go, we will most likely have to move down to Miami (me, and my parents switching off) so we can be ready for organs when they become available. It is a very huge surgery as you can imagine. The benefits though to doing this many organs is everything is still connected when you think about it. You don't have to recreate all of those ducts that I would have needed with the whipple, because they all stay intact. Also all of the blood vessels are all still connected for the most part. As I said before you can also go down to 40 pounds for my weight, and go up too, but not too much because well... they need to fit!

While we were in Miami we met the Turns family, which was SUCH a great experience. They are the sweetest family, and I have my life to thank for Mrs. Turns for reaching out to us and giving us the info that they just went through. Caroline has the heart of a lion. She is so courageous I could not believe someone that young was so strong. She has given me so much comfort for going into this surgery. She seemed so great! after seeing an 8 year old do so well, I have to believe I can do this too! She is who I can look up to as a hero in my life! We talked to both Mr. and Mrs. Turns for a while and they gave us so much great information that was so helpful, we feel a little clueless in this new city with new doctors and procedures.

That's about all I can think of that I needed to tell everyone I hope I included it all! The doctors said for now, keep up with the maintenance chemo, and we'll be in touch! So for now, we'll be in touch! Lots of love!

Sammy

Caroline Turns..a new hope

2008-07-24T17:36:00.000-07:00

Hi everyone,

I thought I fill everyone with our current situation. Sam has been receiving different types of Home Chemo this past Month consisting of Irinotecan and Temodar. The results seem insignificant at this point. Sam's pain levels have been pretty high so she is loaded up on pain killers to try and manage the pain.

As you probably know the Whipple procedure was taken off the table but another opportunity has presented itself. If you have been keeping up with the blog and reading the comments I’m sure you were excited as we were to hear the story of Caroline Turns. We have been in contact with her family and the Miami doctors. We were hoping to have been there two weeks ago but that all came to a crashing halt when our insurance company got involved and denied any and all coverage that has anything to do with a transplant. Their position is that the requested services (proposed multivisceral transplant) do not meet the definition of medical necessity found in the City of Highland Park’s benefit coverage.

After consulting with Sam’s doctors here at the University of Chicago and phone consultation with a very intelligent Pancreatic doctor at MD Anderson Cancer Center everyone is in agreement that Sam needs the surgery/transplant to have a chance at a cure. This needs to be done before the tumors have a chance to progress any further. So that being said we are flying to Miami anyway to meet and have a consultation with Dr. Andreas Tzakis the head of the transplant team. We hope to learn more about this multivisceral transplant, which was done successfully with 9-year-old Caroline Turns. Her situation was just like Sam’s and while she is currently still healing and recovering from the surgery in Miami, they feel she is now cured, cancer free!

In the mean time we hope that the City of Highland Park, Cigna insurance and the University of Miami Hospitals can come to a quick agreement to cover the cost of the only known cure for this stubborn disease, while we have this window of opportunity.

Thank you everyone for everything that has been, and is being done to help us, giving us the ability to take this trip to meet with the specialist. Thank you so much Marcjana Turns for reaching out to us, letting us know about your daughter. You have given us so much hope! We are also praying for her and your family.

Lots of Love, Chris

Blah

2008-07-12T14:46:00.000-07:00

Hey all. So the chemo effects are startin to kick in a little more. I'm always tired (slept in till 3 today!) and am pretty frequently nauseous so I've been laying low. I forgot to mention along with the catscan on the 16th I'll also stay there in the spa (Special Procedures Area, not to get my hair done) and start day 1 of the new chemo round. My counts a couple days ago weren't that horrible, which I'm not too sure if that's a good or bad sign to be honest. We'll see soon. Lots of love

Sammy

Wii, Movies, and Food... livin the good life

2008-07-08T19:48:00.000-07:00

Hey everybody! My dad reminded me today its been a while since I wrote anything and I should update on my status. Well, not much is new for now. I've finished my first round of this new type of at-home chemo, so for now I'm doing what my title said: playing WAY too much wii, watching a ton of movies, and trying to eat as much as my weak appetite lets me. I'm still on the continuous pain pump which doesn't allow me to drive so I get to feel like a 14 year old again and have mom or dad drive me everywhere if I need a ride :) Quite exciting! I have a cat scan on the 16th to see what's going on, and hope that this chemo is doing something good rather than letting the liver keep on growing. Oh i forgot to mention, of course, Bella is getting lots of my attention. We hang out most of the day and she has advanced to not sleeping in her crate anymore, she sleeps on my floor. Fortunately she doesn't like sleeping in my bed anymore, because she realized she has more room on the floor (we fight over space in my bed.) Besides that not too much new, just enjoying doing nothing! I haven't felt too horrible from this chemo either, the side effects are a piece of cake compared to the other ones I've done. I've only gotten sick a few times. Really all that I experience is some drowsiness and sometimes a bit of nausea but my meds usually can take care of that. So for now we hope that this chemo (despite the fact that it seems so easy) is doing the trick and helping to shrink some tumors. So I won't have any new news until after I hear cat-scan results so until then- lots of love

Sammy

p.s. go cubbies!

Hey there!

2008-06-26T22:04:00.000-07:00

Hey everyone! Our cable has been out for a few days so sorry havn't been able to update! Wednesday my mom and I went into the hopsital for first round of this new chemo and ended up staying for quite a bit longer becuase I needed a couple transfusions as well, since my hemoglobin was a tad under. But all went well (really well when I kicked my mom's butt in rummy {on heavy drugs} shhh!) Today (well its past midnight.. so Thursday) I got my first at-home chemo. The nurse was great and fortunately had paper work to do during the hour we had to wait together since I was so sleepy and a bit drugged I passed out. My pain is finally being controlled! I have an at home continuous dilaudid pump that gives me pain meds slowly throughout the hour, and I can push a button (to a certain extent and limit) which will add more if I'm still in pain. It's doing the same thing as the ones in the hopsital did for me.

This is helping with my shoulder and allowing me to start to function around the house normally again instead of just laying on the couch all day saying my shoulder hurts and demanding back rubs from anyone I can see! (I still don't mind a back rub here or there tho) Otherwise I still am laying around (on the hammock mostly) trying to get some good R & R. It's not NEARLY as bad, but like when I was in the hospital and couldn't remember anything, I'm again a bit on the forgetfull side. So don't be insulted if I don't call you back ever or things like that...just keep on calling me and bugging me! That never fails! :) ...Unless you're my parents requesting something to be done around the house then.. wait what? i forgot! ow ow my shoulder!!..... ;) Lots of love

Sammy

Back Home

2008-06-16T09:41:00.000-07:00

Hey everybody! I've been back home for a few days, just relaxing and enjoying the nice weather. Lots of naps on the hammock and trying to be outside. Bella was pretty excited when I got home as usual :) I don't know my next appt. w/ the doc as of now but I'm guessing we'll start that chemo in a few weeks when I'm fully healthy again. So for now just some nice R & R. lots of love

sammy

Back again

2008-06-10T13:03:00.000-07:00

Hey everyone.. so I'm back at the hospital again. Chemo kicked my butt as usual, but I don't think I'm going to be here long at all. My fever has already stopped (thats what brought us in) and I'm getting transfusions so my counts are on their way back up. So I'm thinking maaaybe tomorrow, or the next day I'll be back home. I'm not feeling too bad either, so its not too rough at all. Just wanted to let everyone know where I was at.. I'll post up when I get home! lots of love

Sammy

p.s. I'm in 616 again which is an awesome room (best view on the whole floor) it's one of the huge end rooms, its not the amazing 614 with the shiny blue floor in the bathroom, but I'll survive without the blue tile floor. :) Amazing skyline view and if i ever wake up at like 4 or 5 I actually stay up to watch the sunrise 'cause its so neat here. That sounds really dorky of me.. i watch the sunrise.. i also enjoy barefoot walks on the beach, candlelit dinners, and i pray for world peace.. yeeeesshh

p.p.s. i tried to add a picture on here that i took with my computer of the skyline... it doesn't look so cool on here.. it makes the buildings look small, but just use your imagination. In real life they look much bigger and its neater, but at least you can have an idea :)

On to plan....n? I've lost count

2008-06-06T08:09:00.000-07:00

Hey all. So I've been home for a few days trying to relax, honestly I've been sleeping most of the days away. I've been battling some esophagus issues which are a pain, but hopefully those will be under control soon. We had a meeting with the doc on Wednesday as to where we are going to go from here, since our surgery went yes, no, yes, no. Bit of a roller coaster huh? The issue like I said before was my liver lesions have had a party and grown like there's no tomorrow. The problem with that was they grew within a period of time that was so short that we realized we wouldn't be able to do surgery because afterwards they would grow and I would not be able to receive chemo yet. I actually take it as a blessing in disguise that we weren't able to do the surgery. If we went ahead and had it, my liver tumors would have been growing and growing, possibly even spreading to other organs, and I would have been hung out to dry. I won't be able to get chemo for a long time after surgery because it is such a major major operation that my body literally just won't be able to handle that toxicity and be okay with it while trying to recover and basically build a new digestive system. So now we have to figure out how to get back on the path of being able to do surgery. As we've known from the beginning the only way to cure this pain in the behind is to surgically remove it all. Right now surgery is not an option; but that doesn't mean it never can be. We need to get back to a place where my liver tumors are small enough and we know they can stay in check for a period of time long enough where I can recover from surgery. The chemo rounds that I have done now have run their course, and I am done with them. I've gotten 6 rounds, and after a certain amount of time, and rounds of certain drugs the toxicity just becomes too much for your body and your organs will eventually start to fail because of it. So now we are going to throw a new chemo regime at these tumors and hope that they work. There really is no saying if it will or not, because there really just isn't enough research on my cancer because it's so extremely rare. The chemo I will be getting isn't experimental, but it's something that we wouldn't normally do. We have just had a cat scan done, so we will go with 2 rounds of this new chemo plan and do another scan to see how it affected the tumors. This new round is going to be very different than what I'm used to. I've been used to staying in the hospital for about a week every time and getting around the clock chemo, but this new one is actually an outpatient procedure. The first day I will go into the "spa" (special procedures area) and have the IV chemo given to me to make sure I handle it okay. It only lasts about an hour, and then I'll get fluids for another hour and there's also an oral pill to take. After that for another 4 days I'll be able to get it at home with my home nurse which is a big change and hopefully will be nice. The side effects of these drugs are not supposed to be as harsh as the ones I'm used to either. So the plan for now is try out these new chemos and see how they work. After that, if these aren't doing the trick there are many experimental phase 1 studies done at UIC that people come to from around the world to try. Its a strong program, but you never know what will happen. You may hit a homerun and find a drug that will be at the forefront of your cancer, or you may struggle with bad side effects and have nothing helpful done to you. That's just the risk you have to take, and we are never going to stop fighting so if it gets to that point we will take our chances and hope for the best. The goal here in the big sense is to find the chemo that will shrink them down, and then we can hopefully get the surgeons back to agreeing to attempt this procedure. It's very aggressive what we propose and not all surgeons would be willing to do it. We were lucky to have our doctor push these surgeons to do it in the first place, and I'm confident she will be able to do it again if the time comes around. So now that I feel like I've written a 10 page essay for some science class I guess that about wraps it up. On the lighter side- been hanging at home, loving the fact that my friends are back in town, playing with Bella, and enjoying the weather. We got a hammock back up in the backyard again which is my favorite, so Bella and I have enjoyed a couple naps on it. The only problem is she's only comfortable if she's laying completely on me otherwise she feels unsteady since her legs fall through the holes and she's wobbly, so I get to nap with an extra 60 pounds on me, but hey thats love. Thanks for the support as usual. I've been using lots of gift cards to do stress releaving things such as get massages. Thats been something that helps me to relax.. Tony's massages aren't quite cutting it anymore.. (sorry bud) I've also become very addicted to mario kart on wii and have been privalaged to have my butt kicked everyday by Katie Klemke since you can play online with other people. She's always up for a good butt kicking. I hope everyone has a nice weekend! As always-lots (and all) of my love

Sammy

Last Day Hopefully

2008-05-31T13:32:00.000-07:00

Hey everyone! yes... again.. i know, frustrating. My dad has already explained most of the story for me so I don't really have much to say myself. I just thought I'd get up here and give the most recent update I can and let everyone hear from me so you know I'm doing all right too. We went with our old 3 day chemo round that we would have been scheduled for, and It's weird timing, it actually starts at 1am, which works out for me. I sleep through it and it really isn't a problem at all. I'm not doing bad now, I am usually fine when I'm literally getting the chemo, it's the after-effects that get me. My fever is gone also, so that's nice. The only thing that might cause a bit of a obstacle is the pain medicine that I'm on yet again. My right shoulder is in bad pain when my liver is acting up, which we all now know it has been. My right shoulder has been in a lot of pain, but the past 2 days have been fine b/c I've been on the continuous pain pump when I can even push the button to get more if I need it. Fortunately I haven't had to push the button, which will make it easier to get off of it. Dr . S and I have come up with a plan to get off of it before tomorrow so I can go home once I'm done with my chemo. I am so so so happy to get see Bella, my heart broke when I heard how much she cried when I left. She is turning into such a smart dog, she knows when I'm leaving for the hospital for a while, and when I'm leaving just to go out for a little bit. She even ran down the stairs to go be with Alex when I left and she's afraid of the the stairs, but she ran down there to lay in Alex's room when she was so upset. I'm excited to go play with her, be with the rest of the family, enjoy Mom's home cooking and spend some quality time with my new mario kart wii :) Talk about addiction.. wowza that game is fun! :) So In a couple weeks we'll get a cat scan to see how this chemo affected my liver tumors because we need to get those well under control before surgery so it's still a likely possibility we go in for a very different approach with another kind of chemo before we go in for surgery again. So.. for now, gonna try and get off these pain meds, hope my liver tumors are gettin their butt kicked, and I hope Bella is getting ready for some big cuddle sessions with her mommy :) And to my mommy- sorry, but I think the big poochie is gonna have to sleep in my bed tonight whether I have to sneak her or not. And if you say no we'll have to see if I can git in her crate with her! :P Just kidding, I don't think THAT would work out. Also- thanks to my friends, parents, and sister that drove out here to see me, I have the best support ever. I should be able to have more people visit me once I'm at home. It's hard for me to keep in my head everyone who wants to visit, so gimme a text, don't be insulted I can't remember who wants to come when! Anyways, Alex is here to play with me, so we're gonna play and I should be back sometime tomorrow. Thanks for the constant support as usual! All my love

Sammy

Here we go again

2008-05-28T16:33:00.001-07:00

The surgery is off again. It never even got started. The fever Sam has been running all this week was enough to cause a lot of concern by the surgical staff who then requested we bring her in early. We admitted her last night so the staff could examine her and run a few preliminary tests. While we were there her fever spiked at 102.6 and they could see that her painkillers were not controlling the pain. They performed another CT scan, which showed a significant increase in the size of the mass in her liver. They believe that is causing her current problems, which has in turn cancelled the surgery. The surgeons feel we need to get more control of the liver tumors growth in order to have any chance of success.

The routine for chemo is to receive it every three weeks. That had appeared to have been working shrinking the tumors and keeping them in check. However while waiting to get the Whipple done we have had to endure numerous scheduling problems/delays. This has resulted in Sam only having chemo once during the last three months of March, April and May. So we left Sam there at the hospital trying to get the next round of Chemo started. Sam’s Doctor is out of the county and there is a little debate on what type to do next. They said they are waiting for an email response from Dr. Cohn before any decisions are made.

The good news...The scan did not show any obvious signs that cancer had spread anywhere else. So if all goes well with the next round of chemo, which shrinks that liver tumor again, hopefully they will operate quickly before the thing has time to recover and start growing again.

More good news….the next entry ( a little more upbeat and pleasant) should be by Sam. We hope to have her computer back to her within the next few days.

Chris

Thanks Everyone!

2008-05-26T13:48:00.000-07:00

Hey everybody! I wanted to thank my friends from Friday, and all the other friends and family that came out on Saturday to wish me a Happy Birthday. I was bummed on Saturday that I couldn't spend more time talking to people and being social. If it was my way I would have gotten to chat with everyone and enjoy a burger and sausage with each and everyone one of ya! I know I don't need to justify it, but I just wanted to explain why I seemed like I was crabby or ignoring people- I was in a ton of pain, and my fever got up to 102.6 so I didn't really have it in my to do anything but lay in my bed and go to sleep. I felt horrible not talking to people more, and even saying bye to everyone, but it was at least nice to see everyone's faces so thanks again for comin out. Also thanks to many people for very nice gifts, I feel very loved! I also have to give a GIANT GIANT thank you to my parents. They put in so much work and effort to make this a special weekend for me, and they were right on. It was all I could have asked for and more, sorry all you suckers, but I got the best parents in town!! ....So now plan is surgery on Wednesday.. it's a very long surgery and I'm not whose going to be in charge of the blog for a while (I'll be in la la land and it won't make sense) but I'm pretty sure Alex most likely will either be able to put up something short that night that I'm allright, if not the next day. Hopefully I don't give out phone calls like I did last hopsital stay where I was too drugged up, I think I'll make them hide my phone this time. The plan (which can always always change) is ICU for a couple days, and then in the hopsital recovery floor for probably around 2 weeks. I'm not going to be in my same building as usual because my surgeon is not in peds. So I'll be in another building, but I guess I'll be okay without my nurses 'cause I probably won't know what's going on anyways! Ok well thanks/sorry/love you all/see ya half a pancreas later!

as always- all my love

sammy

Saturday- Birthday Open House

2008-05-21T10:38:00.000-07:00

Hey all! So my 20th birthday is Friday, and that night I'm hanging with some friends and bought enough food for a small army, so on Saturday, my parents wanted me to say anyone is welcome to come over that afternoon/evening (we're thinking about anytime after 3). An open -house type thing! There will be plenty of food and drinks and we'll set up some baggo, boche ball, or croquet for you older folk (just kidding) and stuff so feel free to bring the fam! I'm guessing if you're planning on coming you would know where my house is already, if not ask gia. thanks!

lots of love!

Sammy

Official Surgery Date

2008-05-14T13:28:00.000-07:00

Hey everyone! So I had a VERRRRRY long day at the hospital yesterday .. which is all right, because we now have an OFFICIAL surgery date that won't be changed or pushed back or anything- may 28th! So I'm feeling pretty good right now, I've been doing some fun stuff, gone to a Cubs game, went to the Aquarium with Dasha (thats the pic, Dasha and I outside aquarium) and working on Bella's training. One day my buddy Kevin took Tony and I up in a plane, and Tony even got to do some flying!! That's the other picture up there! Thanks for the support as usual. Oh also I'm gonna try and find a way to put some links up here soon of things people have been asking about, so hopefully I'll find time to figure that out soon. Also- I've been hearing from people that they told me things during my hospital stay that apparently may have been important; so if you left me any messages or anything while I was at the hospital and I never got back to you feel free to call me again since I don't really remember my hospital stay! ha thanks! Thanks so much! lots of love!!

Sammy

HOME!!!!!

2008-05-02T14:52:00.000-07:00

ooooh boy does it feel good to be home! And be able to write full sentences and make sense and not fall asleep while talking, etc... haha that was a rough couple weeks my apologies to everyone I called or tried to talk to online and made NO sense. Alex informed me I gave her many 4 am phone calls involving very interesting topics that are unfortunately not going to be discussed on the blog. ;) Bella was sooo happy that I came home... we kinda kiss a little bit.. thats not weird right? okay.. just making sure :) So I'm still kinda tired and recovering but being home makes everything much better and easier :) Surgery is going to be pushed back a bit because we weren't expecting these rough weeks, so I need some time to recover before I go into surgery. Maybe around the 16th or so...Thanks for the constant support as usual. ya'll are the best!! lots of love

Sammy

why am i still here?

2008-04-30T04:50:00.000-07:00

hey everybody! hope everyone is enjoying themselves and the end of

april :). SO my blood cultures havent been positive since the first time. Also I haven't had a fever in about 4 days which is also great news. S0 why are you still there

you may ask. Well I've been on a persoal pain pump that I control. So I need to slowly get weened off that before I can go home. I've had 5 tranfusions so far. Ok sorry for the breviety but you have no idea how hard it is to type on dilaudid. i used the backspace buttton about every word multiple times. This took me like 30-40 minutes to write haha, oh boy, lots of love

sammy

I miss Bella!!!!

2008-04-26T11:17:00.000-07:00

Hey all! So I'm sitting here on this fine Sunday Afternoon with Dad and Tony. We just finished playing some Guess Who and built a puzzle together. I've been thinking a lot about Bella at home and how much I miss her. Speaking of missing, I guess I miss my family too. I came into the hospital Sunday night for F+N (fun medical lingo for fever and neutropenia {even more fun medical lingo meaning bottomed out counts}) It's been a tough week with all the chemo side effects. I think the whipple procedure is still on for the 5th of May. I do hope I get to go home before that. We're having some slight difficulties....but honestly they would be a bit too much information (TMI). I've had a rough couple days in the hospital, but when you have nurses like Dasha, Stephanie, Sarah, Amy and so many many more it makes it go sooo much easier and smoother. The last sentence has literally taken me 20 minutues to write, so it's bed time. Oh, I wrote this blog in pieces haha my Dad and Tony left hours ago. Hope you did well in your baseball game Tony! Make sure you practice Bella's new tricks with her everyday if you can@ :) Love you everybody

lotts of Love

Sammy

p.s. sorry if it makes no sense- i blame the continuous and plentiful abundance of dilaudid.

p.p.s. That pic is Dasha on the left, then me, then Steph! I love my nurses!!

Back to the hopsital

2008-04-22T09:36:00.000-07:00

Hey everybody! First of all I wanna say that Saturday was amazing. Once again I was blown away by the kindness and generosity and love that everyone has been giving me, and I can't explain how helpful it is. It's such a boost.. so thank you to GBS and everyone there that helped put that together, and everyone else that was there and supported me. Now for the not so fun stuff- I went into the Hospital once again on Sunday for neutrapenia and fever, which has happened 4 out of the 5 times after chemo so it's not too big a deal. I have a feeling this might be a long stay though, my fever keeps getting real high like 103 and I can't kick it. I also got positive blood cultures (that means theres bacteria in your blood) so you just get antibiotics for that which I'm guessing ill have to do at home as well. Im not sure if this will push back the date of surgery at all, we'll have to see. On the plus side (kinda) Bella comes home today!!!!!! But I'm not there which makes me super sad, but I'm glad she's home at least, I cant wait to check out her new behavior! So thats about it for now, hope everyone has a good week! Lots of love

Sammy

Softball Day

2008-04-18T07:21:00.001-07:00

Hey everybody! Sorry this isn't a video haha, I see the last was quite popular, but as I just woke up and look like a zombie I think it's better for everyone if you can't see me right now. I was just putting up a post for a couple reasons- 1. the chemo round went fine as usual, starting to get to me but I'm trying to stay active while I still can. 2- GBS (my old high school) and the people there have been really awesome and made this 'sammy day' tomorrow during the games they play. It's at the varsity softball fields at GBS (off Phingsten and Lake) and I think they're gonna have 3 games played. They're having the school choir sing the national anthem at like 8:45 or so, and then theres games at 9, 11, and 1. They're gonna be selling food and grilling out all through there so yummy stuff to eat. I think they're gonna be selling those tuff cookie bracelets and some t-shirts as well to my fund so it's pretty cool. I'm gonna try and go out for as long as I can depending on how I'm feeling tomorrow. Hope everyone has a great weekend. lots of love

sammy

I'm a dork.

2008-04-10T16:16:00.000-07:00

GOOD NEWS!!

2008-04-10T14:30:00.001-07:00

So umm.. about that not having surgery thing.. april fools? haha.. ITS BACK ON! I know .. what right? Long story short- when my surgeon Dr. Liu (who we love) went in with the camera in my belly button which is turning into an art project, he saw 4 areas that looked like they could be cancerous. They biopsied all four and brought them to pathology to determine if they were cancerous or not. The first 3 came back negative but the last one came back positive and that's why they didn't continue on with the surgery. Here's the kind of confusing part and hopefully I explain it okay. They BELIEVE what happened is.. when i got a previous biopsy its possible that when you pull out the big mama needle a cell that is on it can kind of 'fall off' or 'spill' into a new area. After my recent surgery was done my surgeon was curious that 3 were negative and only 1 was positive, and he went back and talked to my previous surgeon and did research and found the spot he took the 4th from was the exact same spot they had done a previous biopsy. So what they believe is it was a cancer cell that kind of got spilled over, so they had planted it there. This would mean it's not spread around on its own, and we could go ahead with the surgery. It was crazy news, and I'm just so thankful that Dr. Liu went back and thought about this and did the research he did after my surgery was over. This doesn't normally happen. So we don't know when surgery is yet. If we can't have it for a couple weeks we're going to do a chemo round first, but it might be possible to have the surgery within a week. :) yipitty skippity dippty dee! I was going to be creative and put a video post on here with the good news, even thought about putting into a silly song on guitar, but I'm not feeling too hot today so I had to go the old boring typing route. I think soon we might be due for some sort of video though. Im up for suggestions. And I better get some dangit, b/c 1640something people have looked on here in about 30 hours, so gimme some ideas! :) Thanks for all the prayers and support from everyone.. bob was right- everything little thing is gonna be allright! Oh, and i forgot to explain the rest of the plan. duh sam- So after if surgery goes well and is succesful in the pancreas department the transplant team says if we can contain my cancer to my liver for 6 months they will consider me a liver transplant candidate. This would mean during those 6 months I would get a different regime of chemos than i was getting before b/c we believe what I was getting isn't going to be bad-ass enough to keep it just to my liver. So we might be doing some types of phase 1 experimental drugs, so if I sprout a tail don't make fun of me. That's about all the energy I have for now, lots of love everyone. celebrate!...(even tho this surgery suckssssss and will be a crappy recovery...someone please induce a coma?)

sammy

Bed Time

2008-04-09T20:47:00.001-07:00

Hi all I've had a super long day and don't have the energy to type out the whole story of the doc's appt. but I will do it tomorrow morning. sorry for the suspense. but if you're nervous- dont be. like bob would say 'every little thing is gonna be alright!'

lots of love

sammy

p.s.- WOW TO MY HIT COUNTER! GEEZ! Thanks for checking everyone! :)

Woopsies sorry!

2008-04-08T13:21:00.000-07:00

My dad has just informed me that I did post on here that we'd have a plan on Monday.. woopsies it's Tuesday and I have not posted any sort of plan have I? sorrrrry! We did get a call from the doc yesterday, we are meeting with her tomorrow so that's when we'll see whats up. Don't forget theres always hope, hey we might hear some good news. It would be about time right? :) lots of love

sammy

Lets spice this UP

2008-04-06T16:31:00.000-07:00

So i totally hate when i have a depressing blog entry even tho i gotta lay down the facts like they are... so after consulting a very worthy consultant (none other than the fabulous alex wulfsohn) we decided to share with the blog world how my hair is starting to grow back. Now it's only a baby step, and it may fall again if i have to do more chemo, but baby there is total peach fuzz on my head. look closely! i can't stop touching it! haha.. lots of love

sammy

Rough Day

2008-04-05T13:17:00.000-07:00

Hey everyone.. so I know a lot of people know already but here's the update with what happened on Friday- we weren't able to do the surgery. The whole point of the whipple procedure was to prepare for a liver transplant basically, because you can't do a transplant unless everything else is cancer free. So I did go in, endure a painfully long attempt at placing an epidural and go under for surgery, but first they do a laproscopy .. so put a camera through your belly button to check stuff out.. and they found more cancer on my abdomen wall so they had to stop and not do the operation. This was pretty rough news on all of us, because this was our best option and plan...but we'll find another. My doc is out of town until Monday so we'll find out 'plan B' when she gets back and tries to figure out where to go from here. lots of love

sammy

Here we go!

2008-04-03T16:10:00.000-07:00

So we've got the green light for tomorrow. My surgery is scheduled for 9:30 am so I should be getting out sometime in the afternoon. I'll try and have Alex or my parents put an update on here as soon as we can with how the surgery went. I most likely will not want any visitors at the hospital so don't be offended if we deny you a visit haha. I'm gonna be pretty out of it anyways for a while so I may not be the best conversationalist. I'll be home in a couple weeks. Thanks for all the constant support everyone

lots of love

sammy