Sunday, May 20, 2018

Dancing with the National Pediatric Cancer Foundation

For as long as I can remember, Ellie has loved to perform. She loves to dance, sing, dress up in costumes, put on shows...everything. My phone is filled with pictures of her in crazy costumes and filled with videos of her dances. I think her love for dancing was only fueled by watching her sisters and cousin dance for two years. She was so excited to start taking dance classes, that it was one thing that we refused to allow cancer to take from Ellie. For the past two years Ellie has had very little interaction with kids her age, especially in a group setting. But this past fall, when she was old enough to start dance, we let her begin classes. She was over the moon with excitement!

Ellie on the first day of dance class.

This was one of the decisions that we made to care for Ellie's heart during treatment. She probably missed at least 1/3 of the classes and wasn't always well when she was in class, but she was dancing and I think that made her very happy.

Instead of doing recitals, their dance school does musical productions. There are musical theater classes, and as each class performs their show, the individual dance classes will participate in a scene. The kids LOVE them and it is a much more enjoyable experience for the audience. This year the Elementary cast was set to perform Madagascar Jr. Eva is in the musical theater class, so her role was as a penguin. Nora and Ellie are in the same dance class, so they were to dance as sailors during the scene where the animals have been taken captive and are headed to Madagascar on boat. The show is amazing, the costumes are adorable and Ellie is so excited to finally dance on stage!

There were two shows that Ellie was to dance in. With the first show, I was backstage helping so I did not plan on seeing her dance. Instead, I was going to enjoy the show in the audience on second night, along with all of our family that were in attendance. 

Unfortunately, it didn't exactly go as planned. 

Ellie ended up spiking a fever that afternoon. After pleading with her doctor, she allowed Ellie to go on with the show, as long as we promised to keep a close eye on her fever and come in immediately if something changed. The show went on, but Ellie was feeling so crummy that she did not want to dance. It was heartbreaking for our family, but we understood. Cancer took something from us that night, but I knew that Ellie would have many more opportunities to dance on stage.

I wrote this on my personal Facebook page soon after the show:
“I don't know CAST people all that well but I have a feeling that's a safe community to be a mess with.”
A friend sent me this via text this evening. She could not have been more accurate. CAST families are remarkable and share the love of Christ in such real and tangible ways. I was a mess tonight, but walking into my girls’ performance, I hugged and cried on no less than a dozen shoulders. This is why I insist that my girls be a part of CAST. I don’t care how they choose to express their creativity, I just want them to be a part of this culture. I told a mom yesterday that I felt like we hit the jackpot with CAST.
To all of the CAST families that continue to love on us, thank you. We don’t know everyone, but everyone that we do know is so dear to our family. Thank you for being real, thank you for showing God’s love, and thank you for letting me be a mess.
While the evening did not go how I hoped, I’m realizing that it’s not about my expectations. At the moment, we are ALL home together, and that is all that matters.

In a miracle, Ellie's fever never returned. That was the first time that we have NOT gone to the ER after a fever spike. I was sad that Ellie felt so terrible, but happy that we were able to return home. 

A friend took these pictures from the night before and sent them to me.

Now, I'm going to sidetrack with another story for a moment.

Last fall, Eva, Nora and Ellie were asked to participate in an event for the Children's Cancer Center. It was a fashion show fundraiser called Wine, Women & Shoes. They were asked to walk the runway with other families to give a face to pediatric cancer. The girls were excited, and it was an easy walk down the runway and back. Or so we thought. The girls were each given a sign to hold, which proved to be disastrous.

Eva did great, and honestly so did Nora. The only problem was that Ellie decided last minute that she did not want to do it, and unfortunately Nora was the recipient of Ellie's frustrations. 

Ellie was crying and hitting Nora with her stick all the way down the runway. There are no more pictures because I immediately jumped up to get Ellie as she walked off the stage. (I can laugh about this now, but in the moment I was equal parts hurting for Ellie and mortified that the walk was ruined.)

I get it. Ellie is four. It was a big venue with a lot of people, and she consistently does not feel well. I felt bad for having her do it, but honestly it was one of those things that I didn't know what would happen unless we tried. (This was before the Madagascar dance.) Needless to say, we haven't been asked back. 

Ok, so fast forward to about two months ago. A friend posted online that the National Pediatric Cancer Foundation was hosting their largest fundraising event in Tampa, Fashion Funds the Cure, and they were in need of pediatric cancer models to walk the runway. An added dose of fun was that each child would also get to walk with someone in their chosen dream profession. Ellie said she wanted to be a ballerina.

Do you see where this is going? Dancing AND a runway show. The odds were not looking good for success. But hey, they don't know what's happened in the past! So, we signed Ellie up to walk.

Meet Ellie: Ellie was diagnosed with Pre-B Cell ALL 2016.

Ellie likes dancing 💃 and painting 🎨. She dreams of being a ballerina dancer when she grows up. Ellie says: "I am an Elsa snowflake dancer , dancing on a stage.

What's the worst that could happen? She doesn't walk? It's ok. She doesn't dance? It's happened before. She hits someone? We will make sure she doesn't have anything in her hands. 

Parenting seems to be a fine line of knowing when to push your child and when to hold back. By no means am I a stage mom, but knowing how much Ellie loves to dance, I really had hope that this would be something that she would enjoy. We are tired of cancer taking experiences from Ellie. With her treatment almost over, this seemed like the perfect time for her to shine. I talked up the ballerina for several weeks, and thankfully Ellie grew very excited to participate in this event. 

To everyone reading this right now, I don't know if I have the right words to express how wonderful this event was for Ellie and our family. 

It was magical.

Ellie shined like I have never seen her shine before. (Excuse me while I wipe my own tears right now.) We were not sure exactly what to expect, but I can promise you that it exceeded my wildest dreams for the night. 

From the beginning, all of the children were treated with great love and care. Last Saturday there was a costume and fashion fitting, followed up with pampering, gifts and lunch. 

From the moment we arrived for the show last night night, the pampering and fun began! Ellie got to have her make up done and all three girls got to meet princesses (this was another little girl's dream profession).

Eventually Ellie felt comfortable enough for us to leave. A wonderful volunteer, Dara, who works as a Child Life Specialist at All Children's was in charge of Ellie for the evening. Eva, Nora, Mike and I left Ellie with her and then ate delicious food until it was time to find our seats for the show. 

Every single person that was involved with this event was superb! I wish I could individually thank all of them, and I tried as much as I could last night. The runway show was fabulous with very popular (in our house) music from The Greatest Showman. Eva and Nora thought this was the greatest (no pun intended) and belted out the songs at the top of their lungs. From there, everything else really was centered around the kids and their dreams. If you ever have the opportunity to attend one of these events, please go. I promise that you will not regret it. 

The models walked once by themselves, but they also each walked with a child. I didn't get the opportunity to meet the kind woman that walked with Ellie, but she was the perfect match for her. It's obvious to me that she took the time to make Ellie feel comfortable with her. But the end of the runway walk, it was clear that Ellie had no problem being on stage.

At this point, Ellie spotted us in the crowd and yelled out, "Hi Eva! Hi Nora!"

I signed "I love you" to Ellie and here she is doing it back to me.

Now, if you thought that was cute, hold onto your hats. Ellie said that she dreams of being a ballerina when she grows up, so we assumed that she would walk with a ballerina. One ballerina. No, Ellie did not walk with one, not two, but ELEVEN ballerinas!


Ellie danced with the first ballerina at the end of the runway, then proceeded to dance with all of the other ballerinas in pair of twos. She danced her little heart out and we could not be more proud of her. She had so much fun and clearly enjoyed every moment of the evening. I have no doubt that this will make a strong impression on her life and be something that she remembers forever. (I am trying to get a full video of Ellie's walks. If I do, I will be sure to share them.)

There was a final walk with all of the children and their mentors. Ellie was beaming the entire time. We were able to take a few more pictures, but then it was time for the evening to draw to an end. Even with all of the fun, it was a long night for everyone. 

Ellie spotted me and handed me her "magic flowers" given to her by the ballerinas.

Finally, we cannot forget what struggles this little ballerina has gone through to get to this moment. When we arrived home she was sound asleep, but still needed her medicine. This is Mike giving Ellie her daily chemo. 

Three weeks. That's it. Three more weeks of treatment, and then we enter into the "post-cancer" life. Thank you for continuing to follow along with Ellie. We are grateful for your continued prayers.

Thursday, May 10, 2018

The First of the Lasts

I will never forget Ellie's first lumbar puncture. 

Both of them.

Ellie's very first spinal tap was when she was just 11 days old. She caught a cold from one of her sisters, spiked a fever, and was immediately sent to the ER. Standard protocol required this procedure as well as a hospital stay. Mike and I were terrified that something this medically serious was happening to our baby.

In the end, she ended up being fine. All of the testing revealed that it was simply a cold and nothing else.

Diddy, when she was so fresh and so clean, clean.

Ellie's next "first" spinal tap was just as memorable. Same procedure, except this time chemotherapy was going to be injected into her spinal fluid. And again, Mike and I were just as terrified that something so medically serious was happening to our baby.

I will never forget how I felt that day. Some of the details of the day are a bit fuzzy, but I will never forget the terror and helplessness that I felt. That lumbar puncture signaled the beginning of Ellie's treatment. A length of treatment that we could not comprehend. 

Dr. Mogul was the person that performed Ellie's first LP. I vividly remember him telling us, "She will be fine. She is in good hands.". But it was OUR baby, and this was different. For us. For Dr. Mogul, this was just another LP, but still, Ellie was not another patient. He took great care of not only Ellie, but Mike and I too. I also remember him telling us, "I have done tens of thousands of these.", and all I could think was, "I don't believe you. How is that even possible? But, there's no way you would lie about something like that. Not now. Not in this moment. OK, I'm choosing to believe you because I have no other choice.".

I now realize how that number is possible. It's a good thing that the doctors did not tell us everything at once. Ellie's treatment involved roughly 15 lumbar punctures over the next 26 months. That's just one kid. Suddenly, "tens of thousands" seems a little low.

We were given the option to hold Ellie while they put her to sleep, so naturally I took it. Big mistake. Never hold your child while they are being put under, unless you are prepared. Almost instantaneously, Ellie's eyes rolled into the back of her head and her body went limp in my arms. Whatever level of emotional instability I was operating at increased 100 fold in that moment. 

Ellie survived that procedure with flying colors, and went on to go through many, many more. Each one filled with a little less anxiety. It never got easy, but it did become less difficult. And you know what? Ellie is going to be fine. 

Well, we are beyond thrilled to report that this past Tuesday Ellie underwent her LAST LUMBAR PUNCTURE!!!

Ellie was not in the mood to take pictures with people at this point, but I still got one with Ms. Judy.

"I want to see Dr. Mogul so I can dance with him." - Ellie

Whenever she is NPO, Ellie always ends up falling asleep.

The first of the lasts has begun! Over the next month, Ellie will hit several treatment milestones and we hope to celebrate each one. Our plan was to celebrate with family and close friends on Tuesday after Ellie left the hospital, but that day ended up being much longer than we anticipated, at just over 9 hours long. So, we moved it to the following evening and relished the fact that Ellie will no longer have to undergo lumbar punctures. It seems surreal to be so close to the end, yet we could not be more excited!