Support a Great Cause

We've enjoyed camping, out of cell service, all weekend...but now I'm back to spread more Childhood Cancer Awareness. Here is a great opportunity to get fantastically cute photos of your child AND support an amazing cause. Nicole Walker, of Nicole Walker Photography, is using her time and her talents to make a difference for kids with cancer by supporting The Ronan Thompson Foundation. Local friends, book your session today! Thank you Nicole!

 



Catching Up

When Nate finished the worst of his treatments last year, I turned my concentration to building our new life.  That hasn't left much time for blogging.  In all honestly, it was pretty difficult for me to acclimate back into society (I'm still not there yet, and may never be)...but that's a post for another time.  It's still very important for me to share Nate's story.  I have been in touch with several families going through treatment who have told me how much reading Nate's blog has helped them and how much HOPE his story provides.  I also want to continue to document Nate's story for him to have when he gets older.  I have been pretty good at keeping Facebook updated...it just seemed more manageable for me, but I know everyone doesn't have Facebook.  So, I just copied all of my Facebook posts from Nate's page to the blog, to catch the blog up to today (it's a LOT of posts).  I will continue to copy Facebook posts to the blog and will write some blog posts when I feel the need to write.  Thank you all for loving and keeping up with our super boy!

Please Share



Please take a second to share this video and ask your friends to share it too. They are donating $2 for every share, up to $50,000, to Alex's Lemonade Stand for pediatric cancer research. That's real money, for real research, to help real children like Nate...and it literally takes only one second. Please and thank you!

 http://u.nm.com/H4ACFB

 



Best Friends

This photo haunts me. I look at this little girl and I see Ellie. I pray every day that Ellie will never have to grow up without her best friend and partner in crime. What this family is facing is beyond tragic. The Truth 365 is working... to spread awareness outside our "childhood cancer circle", which is the first step in making some real changes. Like their Facebook page and visit their website to find out how you can help.

 

 

Three days after his Virginia memorial service, 13-year-old Gavin Rupp was laid to rest tonight in Ohio. 6-year-old Abby and 11-year-old Ian had to say their final goodbyes to their big brother and best friend. This is WRONG on so many leve...ls but this is happening all over the country and the world 365 days a year. The general public and our elected leaders are blissfully unaware that so many kids are dying but we plan to change that. Our campaign is gearing up for Phase Two and we need your help. Please make a commitment today to stand up for Gavin and all children with cancer. Will you be their voice? Will you help us spread awareness? Will you help us advocate for more federal funding for childhood cancer research? Will you fight with us every day, every month and every year until their are cures and safer, less toxic treatments? These kids need you. Don't let them down.

The Rupp family also needs you. Please say a special prayer for Sandy, Chris, Ian and Abby tonight as they say goodbye to sweet Gavin, one of the nicest kids we ever knew. We are dedicated to continuing Gavin's battle for the benefit of all children who face this horrific disease.

Here is a link to Gavin's Caringbridge:
www.caringbridge.org/visit/gavinrupp1

 

 

 

 

Because of Super Nate

Please find 5 minutes today to watch the video in the link. The trial they talk about is the very same trial that Nate is participating in. This trial, and all the others like it that are making true advances in this disease, is not funded by the government, by pharmaceutical companies, or the American Cancer Society. It is only possible because of the small, usually parent run, organizations like Because of Ezra. I don't know where we'd be without them and they need our help.

http://vimeo.com/72366651



Action

This following link is a great post. I still believe in awareness because there are many people who are not aware, not truly aware of what childhood cancer is and the lack of funding...I wasn't. Awareness only gets us so far though, we have to turn the awareness into action. September is a great month for Childhood Cancer Awareness...we need to use the rest of the year for ACTION.

http://summerofthedragonfly.com/2013/09/01/awareness-what-a-bullshit-word/

Childhood Cancer Awareness Month

It's Childhood Cancer Awareness Month and the color is GOLD. Every day I will be sharing something about childhood cancer (a statistic, a child, a story, a meme, how you can help, something). I know everyone reading this is probably already aware of Nate's story and how it has affected him and our family. So, I am asking a favor. Sometime this month, when I share something that resonates with you, PLEASE share it with your friends and ask them to do the same. You could even change your profile picture in support of the kids for all or part of the month. I'm only asking you to share ONE thing, but you can certainly share multiple or every day if you would like. The only way we are going to spread awareness is if we get beyond the small circle of people who are already aware and already care. Thank you!

DFMO at PCH

 

Nate thought today was good for "bring your BFF to clinic day". I signed all the consents and Nate is now transferred to the DFMO trial at our home hospital, PCH. There will only be 7 kids enrolled in the study at this location, so we are very happy to have one of those spots for Nate. He continues to do very well on the DFMO and is experiencing no side effects. No clinic or tests for a whole month! We are so thankful to be at this point! September is Childhood Cancer Awareness Month and we are gearing up to help spread awareness all around. Go GOLD in September for the kids!



We Love Nurses

 

Nate and I visited a sweet boy at the hospital today who was recently diagnosed with neuroblastoma. Please keep little Jonah and his family in your prayers. I hate that they are part of this world now. On our way out we were so excited to see one of Nate's best buddies. He helped us get through some of the darkest days of treatment. He had a bear named Softie as a kid too and used to "fly" around Nate's room in his cape to make Nate laugh. We have been so blessed to have so many amazing people caring for Nate over the last couple years.



The Bus

 

Nate had a great first day! He got off the bus with a giant smile on his face to a little fanfare...paparazzi Mommy, Grandma, Wes and Ellie all excited to see Nate! He won't give me nearly the amount of information I'd like to get about his day but he's excited to go back tomorrow.

1st Day of Pre-K

 

I put on a brave face, then cried like a baby after drop off! I'm so happy Nate gets to have this experience. He gets to go to school! He's so excited to go to Wesley's old preschool that he's been asking to go to since he could talk. Then ...after lunch he will get on a bus and go to the district preschool where he can get speech therapy and a hearing teacher. He is REALLY excited about the bus. It's hard for Mommy to let go of my little buddy for such a long day after I've spent so much time not leaving his side over the last couple years. I know he'll do great, though, and I'm so grateful that he has these opportunities.



Little Stinker

While picking up some things at the store for Daddy, Nate escaped from me. He ran full speed through the men's department, weaving in and out of racks giggling his head off and yelling "Yahoo!". I tried hard to put my stern, "we don't run in stores" face on but I don't think I was too successful. It was hard not to get caught up in his sheer joy when there was so many days I would have given anything to see him run and laugh like that. I know it's a privilege and I am so grateful. I love my little stinker!



Cavities

I'm waiting for Nate to get his 4 cavities filled. Hoping it goes smoothly and he comes out feeling ok and in a decent mood. These expensive and painful treatment side effects are no fun! Always counting our blessings, though. We are grateful that 4 cavities is the only dental damage, so far. We know it could be much, much worse. We are grateful we have been able to save some of Nate's medical fund for these late effects that are not covered by insurance. Most of all, we are grateful to have our sweet boy with us and know that dental work is a small price to pay.

Goodbye Rady

 

Nate just had his last appointment at Rady Children's. Our home hospital, Phoenix Children's, now has the DFMO trial open and he will be switching over at the end of the month. We are so grateful that the trial opened at Rady at the exact right time for Nate to enroll in the study and are beyond grateful that he remains NED and can continue on the DFMO.

Polar Bears

 

Thanks to the Give Kids the World Passport that Nate was given on his Make a Wish trip, we were able to visit the San Diego Zoo, and more importantly, the POLAR BEARS! Nate and Softie were so excited! I also received a call from Nate's oncologist today confirming the preliminary scan results of NED! What a great day!

Those Who Have Gone Before

This is a short, touching story about the Bush's 3 year old daughter who died of leukemia. Thank you to all who have gone before Nate and furthered the research that allows Nate to be the healthy boy he is today. We can only hope that his participation in 8 different trials, so far, during treatment will allow someone in the future to beat cancer with more effective, less toxic treatments.

 

http://www.today.com/news/barbara-bush-recalls-daughters-death-i-saw-her-spirit-go-1C7174610

NED

 

Who has 2 thumbs and is still NED? This guy!! That's 1 year 7 months NED and 1 year from antibody therapy! Take THAT cancer! Thank you God!

Scan Day

It's scan day today. Wear your Super Nate bracelet if you have one! NED! We BELIEVE!

 

 

"I'm so hungry! My tummy is growling. It's growling at you because you won't give me food." Lol! So, we're engaging in a little retail therapy on our way to the hospital to get our minds off scans and FOOD.

 

He's asleep. No matter how strong I think I'm being, it just stinks to leave him.

 

We're home. Nate did awesome, of course. He didn't even wake up very angry. Now...the waiting. We'll let everyone know as soon as we get the call saying he's still NED!!

 

Incidentally, Nate clocked in at 46 inches and 49 lbs today. He's 4. I think he's going to be a giant.

Scan Week

 

How does 12 weeks go by so fast?! We spent the day at PCH. First, Nate had his audiology appointment. His hearing is the same (great news!). One hearing aid is slightly damaged, so we will send it in for repair when we return from vacation. Next, he had his MIBG injection for scans tomorrow. Nate did great getting his IV, with only a little whimpering and wiggling. Then, we got to meet a precious little boy named Zane, who was recently diagnosed with neuroblastoma, and visit with his family. We hate that there are still kids getting diagnosed every day. Please keep Zane in your prayers and say a little prayer for Nate's scans to go smoothly tomorrow and, of course, NED forever!



Lessons from Abigail

After spending part of the evening at Abigail's viewing, we came home to find Nate swimming with Grandma...with his hearing aids in. They are drying in desiccant, we don't know if they are damaged...but it really doesn't matter. We just can't sweat the small stuff. Abigail, we are so happy that you are now cancer free and we promise to live life to the fullest and to keep fighting neuroblastoma.

Talia

Today, Talia passed away. Thank you Talia for being such a strong and beautiful voice for all the children fighting this disease. This neuroblastoma world is a tough one to live in. Praying for all the warriors...past, present and future.

Prayers for Abigail

 

Please say a prayer for our sweet friend and neuroblastoma warrior, Abigail. She is nearing the end of her journey here on Earth and is really struggling. Please pray for some peace and comfort for her and her family. We love you Abigail and Goss family!

Thank you for praying. Our prayers were heard. Abigail is no longer in pain. RIP sweet girl, you are forever in our hearts. This is part of the update just posted by her Mom:

"January 15, 2011, Abigail was diagnosed with Neuroblastoma.
Exactly 2.5 years later, on July 15, 2013, Abigail was permanently healed.
She was in my arms, surrounded by her daddy, brother, sisters, and grandparents. Although she had had a very distressing day, she reached a level of comfort an hour or so before peacefully passing away.
Thank you so much-- so very, very much, for your prayers."

Happily Forgotten "Anniversary"

 

I just realized that I almost made it through the day without thinking about this day, last year, when a reaction to antibody treatment sent Nate to the PICU on a ventilator to save his life. That was 7/13/12. Then, I looked at the calendar...today is the 14th. I actually did get through the day yesterday without giving one thought to it. Wow! I am so thankful to be so busy living a "normal" and super fun life with my family that I don't have to dwell on the hard things we've been through. We spent the day at the Lego Kidsfest today, the kids had a blast, and I am BLOWN AWAY at Nate's Lego building skills for his age. Counting so many blessings!



God's Garden

 

Unlike Nate, who bounced right back into life, I am still mentally & emotionally recovering from Nate's diagnosis and treatment. I have not yet found the will to restart my garden. Chris found this on my long abandoned artichoke plant today! An excellent reminder that God is taking care of things, even when we can't find the strength. Isn't it beautiful!?

 



ProJeKt 3000

 

This amazing young man has ridden his bike across the country from Virginia, even through our scorching AZ desert, and will be landing in San Diego tomorrow. He did this all to raise money and awareness for childhood cancer, specifically neuroblastoma. He is DOING something, in a huge way, for the kids who need him the most. Please like, donate, share or support his campaign and if you happen to be in San Diego tomorrow, head to La Jolla Shores Park at noon to witness the end of his 3000 mile journey. Wish we could be there. Thank you Navid!

 

 

https://www.facebook.com/ProJeKt3K

Dentist Check Up

 

We had a dentist appointment for our hero today to reassess the mess that treatment left behind. We have decided to go ahead and fill the 4 small cavities we have been watching, and just get it over with, all at once. His trashed front bottom teeth are still holding strong (though not looking great) and will probably be ok until they fall out, since they are some of the first to go. Best of all, we can see many of his adult teeth formed below the gum line. We don't know what shape they'll be in, but it's good to know that they're there, because many children going through the treatment Nate did, at the age he did, don't form adult teeth at all. Counting our blessings



2 Years

 

July 7th. It's now been 2 years since our lives were flipped upside down with Nate's neuroblastoma diagnosis. We are forever changed. In some ways for the better, some, not so much. Nate spent the weekend playing and exploring in the woods with his friends and siblings, just like a little boy should. For that, we are forever grateful, but the things that Nate went through to get to this point seem like a horrific nightmare, etched in the back of my mind. "Anniversaries", like today, are hard for me, but they aren't hard for Nate. Nate sees today, like he sees every day...full of fun, adventure and possibility. So, I hug my family tight and am SO thankful for today!



Happy 4th of July

 

We are so incredibly happy to have our whole family together this year! Happy 4th!

Full of Energy

 

Playing at the hospital playground between appointments. He has TONS of energy to burn off and I love it!

Legoland

 

When Nate's Make-a-Wish trip was over, Give Kids The World Village gave him a passport with tickets to theme parks all over the country. Today, we got to use the passport at Legoland California! Thank you! We had a great day and it means so much to us to make memories with our family, every day. We even met a little boy from Oregon on his Make-a-Wish trip and he was having a fantastic time!

Dietary Restrictions

"Oh, I can't have oranges...or bananas". Overheard down the hall while playing with his brother and sister in the *pretend* kitchen with the *pretend* food. Sweet boy knows how to make sure he doesn't accidentally eat foods that are restricted because of the DFMO he takes...even if it's the plastic version.

He Cracks Me Up Every Day



Super Window Washers

 

Yay! Yay! Yay! This makes me so happy! I've seen other hospitals do this and it's so great that PCH is doing it now! Nate was SO excited when the regular window washers came by his window, imagine how excited the kids will be!

Old Habits Die Hard

 

Nate's PJ choice for tonight.

Another Softie

 

The jig is up! Nate found a 2nd Softie! At least he doesn't know about the other 6 we have tucked away. The multiples helped us get him through treatment, always with a clean bear on hand. He's not letting the 2nd one go now!

Mighty Mud Mania

 

Nate, running the mini obstacle course at Mighty Mud Mania with his little sister. We can file this under "things Nate wasn't allowed to do last year". We are so grateful for every moment of Nate enjoying his childhood.

Happy National Cancer Survivors Day!



Official Scan Results

 

We finally got the official scan results. Nate is a perfect, cancer free boy!

Last Day of School

 

What a difference a school year makes! When Wes started 1st grade, Nate had just gotten out of the PICU after fighting for his life. Amazingly, Nate has not had to spend the night at the hospital since and was able to start preschool this year! Both boys did SO well in school this year. I am so proud of my big, smart, strong boys and all the hard work they did this school year!

Happy Nurse Appreciation Week

They have cleaned up every bodily fluid you can imagine. They have laughed and cried with us. They have held my hand in the middle of the night while I sobbed because I was so scared for my son. They distract and love on the kids when they are hurting or scared. They stay on top of super complicated med schedules. They have come in on their day off to check on us. They have run around the room "flying" in Super Nate's cape just to get a smile. They have bugged doctors for us when we needed answers. They truly love the kids they care for and give every one of them a piece of their heart. This is just a small fraction of what they do every day. They are rock stars! It truly takes a special person to be a pediatric oncology nurse and we have been blessed with so many spectacular nurses along the way. We love you all! Happy nurse appreciation week!

...and Home

 

Nate's appointment was great and he's got DFMO for another 3 months. It was a lot of driving, but the kids do great and we got to enjoy a beautiful beach and desert sunset. Can't really complain about that.

Back to Rady

 

We're back at Rady Children's in San Diego to get more DFMO. Nate has been on the trial for 3 months and is doing great, with no side effects that we can tell. We're here less than 24 hours, but we had to squeeze in a sunset and some sand between our toes. Tomorrow, clinic appointment and more importantly...ceviche before we head home!

Potty Trained

 

Being diagnosed with cancer at 2 1/2 means a serious delay in potty training. Being hooked up to an IV pole, pumped full of fluids and given drugs that cause constant diarrhea isn't exactly conducive to learning to use the potty. Today, Nate earned his water table for being fully potty trained!! We are so proud of him! Even better, a man at Costco gave Nate $1 when he told the man why he earned his prize. Nate chose to put the $1 in the donation jar for "his hospital" (Phoenix Children's). Man, I love this boy!!



NED!!!

 

Preliminary report says scans are clean!!!

Scan Time Again

How does 3 months go by so fast?! It's scan time again. Nate will go under anesthesia today at 12:30 for MIBG, CT, MRI and bone marrow biopsies. Please say a prayer for NED and wear your Super Nate bracelet if you have one. We BELIEVE!

 

 

Super Friends Activate!

Nothing like a flat tire on the way to scans to really test my sanity on an already super stressful day. Thank God for my mom who rushed to pick us up and take us to the hospital and is now waiting for AAA to change the tire, all while watching Ellie. Really, what would we do without her?! We made it in time and Nate went to sleep like a big boy. Believe!

 

 

All done! He didn't even wake up angry like he usually does. Now we wait for results which could be awhile since we couldn't get an appointment until the end of the month. Time to start calling and bugging them!

Such a Big Boy

One of the most difficult things about having a young child with hearing loss is teaching them to advocate for themselves...to get the help they need, when they need it. Last week, Nate told me that his hearing aids needed new batteries when they ran out in the middle of the day. Today, I realized when I dropped him at school that I forgot to put his aids in. I asked if he would be ok without them. He politely told me that he wanted me to go home and get them. I'm so proud of my big boy!

Super Nate to the Rescue

 

We put Nate in a Special Ed preschool program because of his hearing impairment and a few speech articulation issues. After everything he's been through, we just didn't know how he would do in a classroom environment. After a month of preschool, he is doing AWESOME and his teachers feel like he can go to a regular Pre-K class next year (with some speech on the side). We are just so proud of him and all he has overcome in his short life. Super Nate to the rescue!



A Day in the Life

 

Nate had clinic and blood work yesterday. A full morning of treatment follow up tests today. Just another day in the life of a super hero.

The Science of Neuroblastoma

This is a great article for anyone who is interested in the science of neuroblastoma. Nate had MYCN amplification at diagnosis, which is what made him "high risk" and the reason he received such intense treatment. Near the end of the article they talk about promising new treatments targeting the MYCN gene, one of which is DFMO (the phase II trial drug Nate is currently taking). We are so grateful for this opportunity for Nate!

 

http://nbglobe.org/mycn-amplification-in-neuroblastoma/

This Week in Preschool

Icing Smiles

 

Having a sibling with cancer is not easy. Life as you know it, gets flipped upside down. Your family is torn apart, your buddy is missing. Mommy and Daddy are rarely home together and when they are, your sick sibling always has to take priority. You are shuffled from place to place. Weird medical things with strange smells are brought in to your home. Your sibling is showered with gifts and attention. Nate's big brother, Wesley, has experienced all this and more in the last 2 years and has handled it all with maturity and grace. So, when I heard about an organization that arranges special cakes for children with life threatening illnesses and their siblings, I knew I had to apply for one for Wes. Thank you so much to Icing Smiles, Inc. and especially Chef Suzanne of Gourmet Cakes and More for putting a huge smile on Wesley's face with the AMAZING Lego cake for his 7th birthday. It meant so much to us all!



Purple Premiere

 

Face painting, and dancing, and a movie...oh my! Thank you The Purple Society for a great night at the Purple Premiere of Oz the Great and Powerful. We had so much fun!

Happy Easter!

 

Last year on Easter, Nate and I boarded a plane to Houston for Nate to begin proton therapy radiation the next day. We are so grateful for our many blessings, but especially to be sending Nate to preschool in the morning instead of into radiation. Happy Easter from the Dinoffrias!

My Constant Prayer

 

I try to keep things positive because our life is mostly super awesome, but I have always tried to also tell our story honestly. Since Nate was diagnosed, several times a day, I look at this boy and say a silent prayer, "Dear Lord, please let us keep him". Every birthday candle, shooting star, and penny tossed into a fountain is dedicated to my wish and plea to see my son grow up. It's just a tiny bit of torture that cancer has left in my heart. Can any other cancer parents relate?



1st Week of Preschool Exit Interview

1st Day of Preschool

 

He was so excited!

 

 

Nate had an AWESOME 1st day of school! His choice for a special lunch? Costco pizza! Silly kid! He can't wait to go back to school tomorrow.

 



Puddle Jumping

 

Putting his Peach's Neet Feet to good use!

Preschool, Here He Comes!

Nate will be starting preschool on Monday! I'm crying already! The IEP meeting went great, he has a fantastic team. It's amazing the stuff you have to learn on the fly as a mom. First, I became a neuroblastoma expert. Now, I'm adding speech/language/hearing to the mix.

1st Game

 

A pic from the "clubhouse". It's opening day and the boys are so excited! Nate wants to wear his socks high and Wes wants to wear his pants low.

The official uniforms.  Go Volcanoes!!
 

 

A much better way to spend a beautiful spring day! I hope I'm not irritating everyone with these comparison pics. I am just so shocked and amazed at what Nate has been through and where he is now. Every moment is a beautiful miracle!

Well Check

 

Waiting for his well check. Key word here is *well*! First one in over 2 years. 44.5 lbs and 44.5 inches tall...he's a square!

1st Baseball Practice

 

1st baseball practice! Nate was ALL smiles and said, "That was my best practice! Can I go to that one every time?!". Take THAT cancer!

Before, During and After

Nate before, during, and after cancer treatment. Last year it was so hard to see beyond his poor, sick, tired body. I could barely remember the chunky baby, or foresee the tall, healthy big boy...but deep inside I BELIEVED. Thank you God.

1st Re-birthday

 

Happy 1st Birthday to my sweet boy!  One year ago today, Nate received an autologous bone marrow transplant, and a 2nd chance at life!  In honor of Nate's re-birthday I *finally* signed up for the National Bone Marrow Donor Registry and will be donating blood and platelets this week.  I encourage you to do one or all of these things too!

We're Home

 

Whew!  That was a whirlwind trip!  We are home, safe and sound, and I am feeling good about the months of work I put into arranging this for Nate.  Success!