Sunday, November 3, 2013

Sparta Culver's CMN Donation Day!

Yesterday we had a fantastic day raising money for CMN!

We spent the afternoon with the girls from the Miss America organization, who painted nails and colored with the kids, Scoopie, Jacklyn from Kicks 106.3 was there doing a live broadcast and we had face painting. It was so much fun!!


The kids were all so excited for Halloween this year! The weather was decent and we had a great night!

Max was a zombie skeleton, Calleigh was a vampiress, Owen was Bumblebee the Transformer and Delainey was a cute little skeleton.

High school visit!

Last week D and I went to a local high school and talked with the health class about D's journey.

What a fun experience. The students asked very appropriate and honest questions! What a great group of kids!

In Memory of Hero KayCee--BRF Culver's

Last week, we headed to Culver's in BRF to Honor KayCee Sanders who passed away in September. She was a brave girl who fought hard.

Looking Back...

So watching the UofM video this morning had me thinking about how much our lives have changed in a year. And I wondered what happened one year ago today, thanks to my FB journal of our journey I was able to look it up. I realized that 1 year ago to the day was the day we made our decision, the day we made THE decision that forever changed our lives. We knew then and we know now that we made the right choice. God led us to our choice. Our little girl could not be healthier, stronger or braver than she is now because of her journey. Our family is stronger, our kids more compassionate and loving, our hearts more grateful and thankful. Would I have chosen this journey...absolutely not. But I grateful for the lessons learned, the prayers spoken and the friends we have met along the way. Blessings to all of you!!

UPDATE 10.18.12: We met with the surgeon today and talked over our surgical options with him. Overall, the conversation went well. There wasn’t anything “new” or unexpected in what we were thinking or hoping for. We chatted about our options again, and discussed pros/cons of everything. As far as the amputation would go, it would be below the elbow and he would save as much of her forearm as poss...ible. The more of it she can keep the better. They use skin from the top side of her forearm to cover the remaining arm. The surgery time would be about 2 hours and recovery time is surprisingly short. He said if she is feeling good, her pain is under control and there were no complication she could possibly go home the in 1-2 days. Which was a relief to hear, the initial 3-7 days was a daunting thought to me…how do you keep a 17 month old entertained for 7 straight days in a small room where she can’t touch “anything”. I also spoke with our radiologist this afternoon for a while and she said she had reached out to a few more colleagues throughout the country to gather their thoughts on this. (In the words of the surgeon, this is a triple rarity: sarcomas compared to other cancers are rare, they are rare in the arm and they are especially rare in children) So with the opinions of 6 other radiologists and oncologists gathered we are still down to our 2 options. We are confident we have gathered as much information about this as we can. This is OUR BABY, you better believe we are getting all the info and all the opinions of the “right” people before making a decision of this magnitude. All that being said, we have chosen to amputate. Not to sound too clinical but this is the best choice for her long term survival. We have a few main reasons why we chose this, one being it immediately eliminates the chance of recurrence in her arm and eliminates the risk of a second cancer from the radiation-both of which are very possible. As far as the “cancer” aspect of this the only thing that remains is a risk of it showing up in another part of her body. But we are eliminating 2 of 3 chances for a cancer to come back; which immediately gives her a better chance of a longer life. We also know that, as adults, we both would’ve wanted our parents to choose this option for us, had they needed to make that decision. She will have the surgery and hopefully after a few weeks her little life will be normal again. I wish it would be that easy for Adam and I, but we are her parents’ and it is our job to hold her fear/pain for her. I am sad that she will never wear a wedding ring on her left hand, but I just want her to be here long enough to get married. I don’t care if that ring is in her ear, her nose or her toes. I am sad when I look at her effortlessly paging through books and think of how much different that will be in a few short weeks, but I just want her here. We are sad at the loss of her arm, but the bottom line is WE WANT HER HERE. Whether this buys her 100 days, 10 years or 70; this is what we need to do to keep her healthy long term and to keep her here for as long as possible. Through all this we are very grateful for many things. We are truly grateful that this is all happening without her “knowing” better. We are grateful that Adam and I agree on her course of treatment and we do not need to “convince” the other that our way if the right way. We are grateful this tumor was on her arm, in a spot that was very visible for us to see right away and take care of it. We are very grateful that this has brought literally thousands of people “together” to pray. We have heard from many friends and family that “I have (10, 20, 30…135) people from this (city, state, country) praying for your little girl”. To us that is purely and simply AMAZING. We have had people who are self-proclaimed as “not big pray-ers” taking the time out of their day to not only pray for our little girl but email me and say “I am praying for you and your family”. We are grateful for the amazing doctors and nurses we have had the pleasure of dealing with throughout this. They not only are taking care of our little girl but we can see genuine care and concern for her and us. We are very grateful for our family and friends, we knew we were blessed before but it is very humbling to have so many wonderful people in our lives who love us and support us so much. Delainey’s surgery is scheduled for Monday Nov 19th at 2pm. That is the Monday of Thanksgiving week. We, of course, would’ve preferred to not do it that day, as it is Adam’s mom’s birthday and the week of Thanksgiving, but if they have any cancellations the week before we may be able to move it up a little bit. But it is also fitting that on Thanksgiving we can say that (for the time being) our baby is finally cancer free! I would again like to thank you all for your continued prayers. I would also like to tell you all that we are at peace; we are at peace because we know this is best, God has led us here. We have bad days and good days, we have bad minutes and good minutes. Do I sometimes feel like crying at Walmart, or Starbucks or Church?!?!? YES!! (then I just pinch myself really hard so I deflect the pain, (who needs people looking at you like a crazy person because you just busted out crying in the toilet paper aisle?) weird I know but it works). We are at peace.


I watched this earlier and could not stop the tears from streaming down my face. We cannot thank the doctors and nurses ENOUGH that were there for us (and some still are) through our whole ordeal. This video means a lot to me, A LOT. These were not our nurses, our doctors or patients we ever met, not even the hospital we went to. But after watching the video it felt like it was. Being at the hospital with your kids through something like this is unimaginable, but knowing that the doctors, nurses, and staff truly love, are deeply concerned and have their lives forever changed by the sheer strength and drive of their little patients is a gift that any parent in this situation is eternally grateful for. THANK YOU University of Minnesota Amplatz Children's Hospital for making and all others like you are AMAZING!!

Miss LaCrosse Pageant has been a while since I have posted on here sorry!! I will try to get caught up.
September 21st was the Miss LaCrosse Pageant and we were fortunate enough to make it a girls night,
Delainey, big sister Calleigh, my mom, "Grandma" Betty (a sweet, dear friend of ours) and myself got dressed up, went out for a fun supper and headed to the Pageant.
The Miss America Organization is one of Delainey's minor sponsors for CMN. WOW! What a night!

First of all, I never fully understood what goes into being a Miss Girl. This is a HUGE commitment for these girls and their families. The amount of community service that each girl needs to do, the fundraising they commit to, the events, the hearts they touch, the good they do...and on and is unbelievable. It is NOT just a beauty contest.

So about halfway through the event Delainey and I were to go on stage and talk about her journey for a minute and how CMN has helped us. As we were standing backstage, I hear it, I hear D's montage to "Girl on Fire" I hear my voice, then Adam's then I lose it. I knew they were going to play her pictures and I guess I should've figured they would play it, but I didn't and I wasn't prepared for it. I was sobbing backstage without a Kleenex! Then I had to go on stage with her and talk!! Oh my! Talk about emotional!
But I wiped the tears and we walked out... then this happened...and I lost it again.

Delainey's Standing Ovation at Miss LaCrosse

Afterwards, Delainey had MANY more fans!!! She had her picture taken with a slew of "princesses" as she calls them. It truly touched our hearts and from the feedback we got from the girls, Delainey touched many herself that night.

We were able to raise $350 for CMN all while having a blast!

Thank you CMN and Miss Girls for an unforgettable night!!