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
I LOVE LOVE LOVE Fall time.
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.

WISHMELUCK..

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,
Maddie

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.

Sue

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.

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

Again.

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

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"

Sue

Methotrexate

So we have been here at Primary Childrens since Friday afternoon on our second round of methotrexate this month. We actually got a two day break last week, it was pretty nice. This one hasn't been quite as bad as it was last week. We have I think one of the best rooms up here, a bigger chair to sleep on makes mom a lot happier:) The blisters on her feet started last night and for some reason she started running a fever. We never know what chemo is going to do to her, it's always something different every time.I just don't get it, it's the same drug the same doseage going at the same rate and every time we have a different reaction. We decided yesterday to have the Ativan by mouth instead of IV and she was actually able to stay awake all day and wasn't nauseated. Today we are not even taking Ativan so she's been eating all day. Right now she is eating a big plate of vegetables with Ranch dip!!! It's good to see her feeling better. Her level has to be at .10 to leave and she was at .38 this morning. We are hoping for tomorrow.  Today she decided to venture out so we went to the gift shop and then to the patio to catch some fresh air. It was so nice to get out of this room. This is a huge step for her, last week I had to beg her to go for a walk, this week she was all for it.

We have 6 more treatments left and can hardly wait. Everytime we here the bell ring down the hall we get excited for the day we get to ring the "no more chemo bell". It will be a glorious day. All the doctors and nurses and Tech's on this floor are amazing, we have made some great friends here, they are like family now, that's really sad, I see them more than I do my own family.

We get to tend the baby tonight and Maddie keeps asking me when she will be here. She's kind of excited. It's been hard to watch her friends go back to school and not be able to join them. I know it is bugging her but she's a trooper and knows that this is more important right now. Thanks again to all her friends that have visited or called or texted her, it really does make a difference. We couldn't have make it this far without the support. love and prayers of friends, family and neighbors we love you all:)

P.S. Happy Birthday Rory!!! We love you:)

July to August

This is Maddie's Mom, I've decided it will be easier for me to blog this journey we are on than it is for her. We have had an eventful last 3 weeks. Maddie got a break for a couple of weeks from chemo and had a lot of fun things happen. First was her new niece Olivia was born on July 19th, actually the day before her last chemo, but we need to mention it. Olivia is beautiful!! We absolutely can!t get enough of her. We call Maddie the baby hog:) but that's ok if it puts a smile on her face.

The chemo she finished with was the one she always gets a fever with and because chemo was delayed a week we were afraid if she got the fever she wouldn't make to girls camp. There was a whole lot of praying going on at the Cook!s house. This whole journey has brought me to my knees more times than ever before but this time was different, I really wanted her to go to camp. She had her blood drawn on Monday and they were going to leave on Tuesday, her counts were not good enough to go, 200. I asked if they could come back on Wednesday and try again and they agreed, we prayed again. Wednesday they were at 6900 but her platelets were too low. We made a mad dash to Primary Children's for a transfusion and then it was off to Camp Woodland. She had a great time! She got to stay in a tent with her best friend Haley Murray and I'm sure there was very little sleeping going on.Thank you 2nd ward young women leaders

for taking such good care of her.


She got home on Friday just in time to get ready for her shopping spree, given to her by the Make a Wish Foundation. On Saturday afternoon this big Escalade Limo pulls up and the shopping began. She had already picked out most everything she wanted and much to our surprise, most of the stores were willing to hold her stuff until we came to pick it up. It was a blast watching her and seeing her smile. We were moved to tears at Guitar Center when the store manager decided to give her the electric guitar instead of letting us buy it. What a great bunch of
guys. One things for sure we are continually blessed to meet such loving and caring people on
this journey we are on. Maddie has a way of melting people's hearts that is amazing to watch.


When we arrived home we only had a few minutes to get ready for the Tim McGraw concert. A girl I work with had her dad get us tickets. We were once again touched by the generosity of others. We had lawn tickets and we were supposed to meet up with Casey to have him get us better seats, well to make a long story short they ended up giving us their tickets on the fourth row, a Tim McGraw hat and a signed Tim McGraw tee-shirt. I don't know how the day could have been any better!!! The pictures will tell it all. Happy Birthday Maddie!!!


Girls Camp 2011 "Be Beautiful to Him"

 

Goofy Girls





The Limo



 



Riding in Style



Gamestop in Clinton





The Loot!!



Girls night out:)



Tim!!