Monday, September 19, 2011

My Amazing Daughter

So Maddie was asked to speak in the Youth Session of our Stake Conference yesterday and she did something that for those of you that weren't there I would like to share. This girl continues to teach me more than I could ever teach her. I love her more than words could ever say and hope that what she did may have helped the youth understand what is really important in this life, I know I will look at my life a little different now. 

I had to speak in the youth session of Stake Conference. Here's my talk:
For those of you that don't know me, my name is Maddie Cook.I'm 15 years old and in 10th grade. I have a long scar on my left leg. In my leg I have a mechanical knee & femur which causes me to limp. I lost all my hair, most of my eyelashes, my eyebrows and tastebuds. I haven't had a real school day since February. I have something called a port that sits on my rib under my skin. The port has a line that goes directly to my heart. Its like a semi-permanent substitute for an IV. I spent most of my time laying in a hospital bed getting a medicine in my port called chemo.
By now I'm sure you've put it all together and figured out that I have cancer. Although most of these things don't sound very positive, there are some good things that come with this trial.
For example, I can be a brunette, blonde or redhead all in the same day. I get to use the electric wheelchair at Walmart, even though it goes very slow. I can eat anything I want to eat and not gain weight. I don't have to shave my legs or my eyebrows. And I don't care what shampoo and conditioner my mom buys.
One thing I've learned is that looks aren't as important as I thought. I have more self esteem than I have ever had. The world wants us to believe that true beauty is on the outside. 
When really, true beauty comes from within. (Then I took my wig off)
The theme for girls camp this year was "Be Beautiful to Him". It was through small miracles and the tender mercies of the Lord, that I was able to attend girls camp. One of the nights @ girls camp we were priveledged to hear from a named Meg Johnson. Who was injured in an accident and is now paralyzed and confined to a wheelchair. It was good for me to hear how positive she was. She had a big smile on her face throughout the whole thing and she never once complained about it. It helped me have a better attitude about my trial. I have so many spiritual experiences that have helped me through this and have strengthened my testimony. Even though I'm going through this hard time in my life, the lord has blessed me in so many ways. (Then I bore my testimony)

I stood next to her as she gave her talk as soon as she took her wig off I couldn't look at the audience anymore. Maddie you are my hero:)

Friday, September 16, 2011

First Doxirubucin without Cis Platin

Happy (almost?) Fall Y'all! ;)

I just went to Walmart with Lindsay, Abbie and Rory and I bought me a little pumpkin :D
Halloween, everything pumpkin, orange, red, yellow, Thanksgiving, rain, jacket/hoodie weather, etc... It just makes me happy inside :)

Well... I better start writing about Doxirubucin or however you spell it.
It wasn't as bad as I thought it was going to be. I thought I was going to be really nauseous and throwing up the whole time like Cis Platin. But I didn't get really nauseated at all. I didn't want physical therapy to come in while I was there BUUUUT... I "had" to have it. The first day wasn't all that bad and I actually got to go down to the "Rehab Gym" and that was cool.

I went in to Doxirubucin with my feeding tube and I HATE that thing. Whenever I would swallow a normal bite size amount of food it would hit my feeding tube and pull it down in my nose which would usually result to 5+ sneezes and me wanting to yank the thing out.
So... I was hoping that I had gained enough weight to take the feeding tube out but when I got there they wanted me to keep it in another SIX WEEKS until I was back to my starting weight. Which was 102. I was of course NOT happy about that. So I spent my whole stay basically just frustrated with it.
On the last night of chemo I started feeling really nauseous. I got up to go to the bathroom and layed back down on my bed and I threw up, and I kept throwing up violently and I threw up my feeding tube. So it was in my nose down my throat and coming out my mouth... (Sorry if that was TMI) The nurse had to take it out... Well it was around midnight and since it was very traumatizing for me I did NOT want to put a new one in because that's just as traumatizing as throwing it up. So we didn't put it in.

After a whooooole lotta drama, I got to have a say in putting it back in and obviously, I didn't. But... I have to gain 5 pounds by next week or it gets put back in.

Lets hope that my counts don't go down too low for this one because me and Lindsay want to go to Boise next Wednesday. Its also Stake Conference for me on Sunday.


I'm getting tired and its late so I'm going to go now. Don't know when I'll/my mom will write next so don't expect another entry too soon. I love you guys! Thanks again for everything you do :)

Love always,

Monday, September 12, 2011

To The Finish Line!!

I am happy to report that Maddie's heart has repaired itself and we are moving forward with the chemo. I can't even begin to express the joy I feel today.  I can't believe I am happy to get chemo, kind of weird to say that.
I have no doubt that our prayers have been answered once again. Everything seems to be looking up, including her weight, she's up to 92lbs and craving food again. I'm not sure how long she has to keep the feeding tube in but at this point it's ok if it keeps her healthy enough to finish this. We will have 5 more treatments after this one, I can finally start to see the finish line to which I am so grateful. This chemo is a shorter hospital stay and we are not sure of the side effects yet because it was always given with the Cisplatin before. Hopefully she will tolerate it better than the Cisplatin. Thanks to all of our friends and family that have been keeing her in their prayers we love you all.


Thursday, September 8, 2011

Patience is a Virtue

So we were supposed to go back to Primary Children tomorrow and have the echocardiogram done and possibly start chemo, but Maddie's counts are too low to start chemo. It's weird that her counts are low because she hasn't had chemo for 2 weeks. One thing I have learned throughout all this is you can't plan on anything, we just have to go with the flow. We did get good news though from her orthopedic surgeon. The knee looks great, he told her he couldn't be happier with the progress she's made and to keep up the good work. That makes us really happy for many reasons:) They will re-check her counts on Sunday and hopefully we go back on Monday for results.

Friday, September 2, 2011

Maddie's Turn to Write :)

Hey. I know my mom already posted something last night but I felt like I should start writing.
A lot of people have asked me what I'm doing for school. Last year (9th grade) I missed a lot of school and to make up for it I have online classes for my core classes including Geography, English, Physics and Geometry. I have to finish those online to get credit for them. I haven't even started them because I don't have to have them done by the time I graduate so I'm not TOO worried about them. The only class I have to finish is English 9 so that I can get into English 10. Once I am done with chemo I will go to high school and it will kind of be like I'm a new student (?) I already have my schedule and I'm pretty happy with it. Even though I don't have classes with all of my close friends I know that I am going to make new friends and even though its hard for me because I'm really shy I think that going through this has made me a lot stronger and it may sound cheesy but I believe in myself more than I ever used to. :)

I'm going to upload some pics :)

Lindsay, Grandma Cook, Olivia

Tim McGraw concert; Me and my mommy :)

Grandma and Livi

Little Livia ridin' in the car :) Hehe look at those EYES!!
cuuuute. /:

hahaha. :) my mula

modeling the tree. :P

Mallory Winger, me and Bethany :)

The Winger Family

I was on drugs :P

Me and Brandon


I just wanted to say a quick thank you to all of you for helping with ANYTHING and EVERYTHING. I'm so blessed to have such great people around me. I couldn't have gone through this without my family and friends. So thank you! XOXO <33

Thursday, September 1, 2011

Learning Patience

I have been asked by several people to update Maddie's blog so it here it goes.
Maddie has 6 chemo treatments left which consist of two different drugs: 4 Methotrexate and 2 Doxorubacin. Yesterday we went down for the Doxorubacin treatment, this chemo used to be given with another drug Cisplatin which made Maddie really sick. This would have been her first time getting just the Doxorubacin. We were told when we started this chemo that there were potential risks. Well yesterday the risk presented itself. Maddie had to have a CT scan of her lungs, a x-ray of her leg and a echocardiogram of her heart. The scans and x-ray were fine and for that we are grateful, that means the cancer has not spread, yay!!. Unfortunately we did not get the same good news with the echocardiogram. The doctors do their very best to deliver bad news but I knew before they even told me. I hadn't even gone to my car to get our stuff because I just knew we were not there to stay. The risk of this Doxorubacin is it can weaken the heart. The way they explained it to me is they measure the rate at which the heart squeezes and if it's less than 28% filtration they can't administer the chemo, Maddie's was 25%, they told us that we needed to go home for a week and hope that the heart will repair itself. Me being the worried mother started asking all kinds of questions. Is this permanent damage? They don't know yet, they will continue to monitor it. If the heart is still the same next week when we go back they will stop this chemo altogether, so of course my concern was then without that drug can the cancer come back? and all I got was "well we will discuss maybe going with other chemo drugs at that point. You basically walk a fine line when you fight bone cancer, they use the strongest chemo drugs they have and give them at such strong doses that sometimes these broken down bodies just can't take anymore. I don't really know how to feel right now, I've gone through the same kind of emotions I went through when this started, anger, helplessness, scared, frustrated and sad. I just wonder sometimes if I can watch her poor body take anymore. I know these doctors know what they are doing and I trust that everything will work out, but it's so hard to give them permission to potentially harm your child.

 On top of everything else she had to have the feeding tube put back in, she can't gain weight and with the fever she had last week she had lost 4 lbs that she didn't have to lose. She is not happy at all about it,, but I'm relieved. Just knowing she's getting the nutrition she needs to get better is such a relief. She is struggling tonight with it in her throat, she said it feels like she has something stuck at the bottom of her throat and just wants to pull it out. I just can't even begin to imagine what is going through her mind. Today on my way home from work, I was wondering if Maddie will still love me when this is all over. She hates it when she doesn't have a choice in the decisions that effect her life and I don't blame her. We are just praying that her little heart will repair itself and we can get to the end of the finish line with this. We are so close!! I know that I just need to have patience, trust in the Lord and press on. We are going to the temple tomorrow night and I know we will find the peace we are looking for as soon as we get there. We definitely couldn't make it through this without the love and support of our family, friends, neighbors and ward members. Thank you all for what you have done, I really can't keep up with the thank you cards and I apologize if you didn't ever get one. Monday night a sweet boy, "Brandon Winger who is fighting his own cancer brought Maddie a giving tree full of food gift cards, jewelry, hats, money, and wristbands, it was so sweet of their family to pass this along, they had been given it by another cancer kid, now it's our turn to pass it on, what an honor. Thank you Winger family, we were touched
. Sorry this is really long. please pray that we get better news next week, we would really appreciate it.
"The Winger Family"