Friday, December 23, 2016

Merry Christmas

This year has been hard. Indescribably hard. Cancer entered our family, and although Ellie was the one diagnosed, I assure you that each one of us has been deeply affected. Ellie's body has been tortured by medicine; the same medicine that is also healing her. She is strong. So, so strong. As I tell her every day, "We will get through this together." Right now, our family is weak, but we are not broken. We are ok, but we will get better.
Eva, Nora and Ellie bring so much joy to our family. They will grow to be loving, caring and empathetic by bearing witness to the people that have been loving, caring and empathetic to them. Ellie is being healed, completely and permanently. It is difficult decision to remain positive, to look for the good. We fail a lot. It is difficult to laugh when all we want to do is cry. But still, we try.
And so, this Christmas season, we will choose to reflect on all of the love and support that our family has received this year. We are grateful for many things, but especially one another. We look forward to 2017 with hope, and more laughter.
From our family to yours, Merry Christmas!

Thursday, December 22, 2016

December Outings

As Ellie finished her last phase of treatment, she was given a break to let her body heal and recover before starting into Maintenance. So, for three weeks, Ellie has had no chemo or other medicine, and it has been wonderful. She was feeling well, eating food and overall happier, so we took the opportunity to pack in a lot of fun. Here is what has been going on for the past three weeks.

We were able to once again visit Quantum Leap Farms through 1Voice Foundation. The girls have been talking about it nonstop since our last visit, so they were ecstatic to get the chance to go back. Horse shirts were a must.

A few days later, we had the St. Joseph's Hospital Cancer Clinic Holiday Party. This is a party they throw every year for all of the families with a child on active treatment. It was so much fun, and the girls had a great time doing the arts and crafts. I think we went home with 15 ornaments that night.

Santa Claus visited and Ellie was not a fan. He walked right past our table, and Ellie could not get away from him quick enough. She turned to me and immediately climbed into my lap. Later during pictures, everyone wanted Ellie to sit on Santa's lap. Nope. Not happening.

During this time, as her body healed, she began eating a lot more food, with butter always being a strong choice. I'm not kidding when I say she will just eat butter. I always put it with something, but more often than not she will only eat the cubes of butter. At least there is a lot of fat! And her body need that. She is still under her diagnosed weight, which means that in 8 months she has not gained a single ounce more. Everything we do is to bring her up to what she once weighed. Bring on the fatty foods!

This picture is noteworthy because it was when she
actually started eating, bread AND (peanut) butter.

Now, this next series of pictures...get ready for some serious cuteness. They were taken by my mom at her house. She was in such a happy mood and actually asked to have her picture taken. THIS is our joyful Ellie!

She was so excited to have a lion family.

These next two pictures were a few days later. Please note the dress, tank top and long sleeved shirt. She wanted to dress in layers.

Get a look at that butter!

Ellie regularly eating has been a big deal. So, yeah, I take a lot of pictures of it.

Last weekend we made our annual visit to a live Nativity. It was already dark, so the pictures did not turn out that well, but we had a great time. The girls love attending this event.

While watching the Nativity, Ellie became so excited and squealed.
"My baby Jesus loves me!"
Yes, He does.

The next morning we were off to make Gingerbread Houses with friends.

On Sunday, thanks to Monica and Emmi Grace's Angels, we enjoyed a day at the zoo. If you've read for any length of time you know how much we love animals. We are so grateful that we will be able to enjoy the zoo as a family for all of 2017. 

That same day, a stuffy nose that had been bothering Ellie (and Nora) hit full force and turned into a cold. Ellie was miserable. She couldn't sleep during her nap unless she was sitting up, which means she slept in my arms.

And the next day. Yes, I'm wearing the same thing again.

So, this is how she ended her break...with a cold. This picture was taken on Monday, and Ellie went back to the hospital on Tuesday to begin her next phase of treatment. More on that, hopefully soon. 

We are grateful for the outings and fun that we were able to enjoy as a family. There have been many mixed emotions over the past few weeks, by all of us. There's a lot more to share, but it seems best to remain positive right now. We are hopeful for a Merry Christmas.

Please continue to play for Ellie's complete and permanent healing, and for no long term or short term side effects from her medicine. 

We are so thankful for your continued love and support of Ellie and our family.

Sunday, December 18, 2016

A Public Thank You

This past Sunday our family had the opportunity to be blessed in a very unique way. We were one of about 20 families that participated in a Holiday Party hosted by the Tampa Bay Lightning and the Children's Cancer Center. We knew it was going to be a great experience, but had no idea how much fun we would have and how comfortable we would feel. 

When I write, I feel like I am not doing my emotions or thoughts proper justice. This event was no exception. I have been mulling it over in my mind, trying to come up with the right words to say to fully express what this day meant to our family. I am failing. So, instead of trying to reinvent the wheel for this post, I am simply going to share what I emailed to the Children's Cancer Center and the Tampa Bay Lightning. Additionally, I have shared pictures at the end from the event. Please enjoy. 

Dear Tampa Bay Lightning & Children's Cancer Center,

This past Sunday our family was honored to be a part of the Holiday Party held in conjunction with both of your organizations. I am not certain that I will be able to properly express our gratitude, but I am going to try anyway. I hope by the end of this email you will all realize how much you have blessed our family.

My husband and I both grew up in Tampa. Before this year, we had heard of the CCC and the work that the Lightning did for the community. I can honestly say though, we never thought that we would be on the receiving end of your generosity. 

We have three daughters, and our youngest, Ellie, was diagnosed with Leukemia in April of this year. Although her prognosis is extremely favorable, this year has proved to be the most difficult one yet. Perhaps one of the hardest parts, that we were completely unprepared for, was how deeply it would affect our older two girls. Cancer really does impact the entire family. While this year has been hard beyond words, there have been a few bright spots, most recently through your two organizations. 

If I am being completely honest, we were so honored and excited when our family was chosen to be a part of this event. However, it also felt a little uncomfortable. When your child is diagnosed with cancer, it is one of the worst days in your life. Slowly, you are able to focus again, and even after a while, be willing to accept help. This is a difficult process. 

An event like this can make you feel like your being put on display. We are the "cancer family" now. While we want to be a part of these events, it can be hard because it brings you back to the reality of your situation. But, anything that can get us out of the house together as a family is a welcome distraction. So, although feeling somewhat reserved, we joyfully attended this event, not knowing exactly what to expect. 

I am humbled to say that everything far exceeded even our best expectations! This was a first class event. I cannot begin to imagine the logistics that went into planning an event like this. I assure you, no detail went unnoticed by our family. To everyone that worked so tirelessly, from the bottom of our hearts, thank you.

Perhaps what made this event so memorable though, were our hosts, Anton & Johanna Stralman. I don't know how you did it, but you could not have made a better match. From the moment we shook hands, they put us at ease. Both Anton and Johanna were immediately likable and easy to talk to. Their children were delightful and our girls thoroughly enjoyed playing with them. Anton and Johanna did everything right to put us at ease and make our afternoon fun and enjoyable. We never felt like we were putting them out, and they genuinely seemed interested in our family. And not just, Ellie, but all of us. They made us feel more than welcome; for that afternoon we felt like a part of their family. Honestly, I could go on and on about this remarkable family, but in the interest of trying to wrap up this email, I will say this: The Tampa Bay Lightning is made better organization for having Anton Stralman.

Thanks to Anton and his family, the Lightning Organization and the Children's Cancer Center, our family had an amazing afternoon! Along our journey, there have been a few moments that I know our family will never forget. This is one of them. Anton and the Lightning have gained 5 lifelong fans! We will never forget the kindness, thoughtfulness and generosity that you have shown our family.

From the bottom of our very full hearts, thank you. 

Merry Christmas!

With Gratitude,
Jaclyn York (along with Mike, Eva, Nora and Ellie)

Monday, December 12, 2016

Goodness & Love

I feel like I am overwhelmed with goodness and love today. I know that sometimes it can be annoying to only see the perfect parts of people's lives on Facebook. I hope you know by now, my life isn't perfect. But, neither is yours. We all have terrible stuff to deal with. And that's it, we deal with it. No matter how bleak, good can almost always be found. You just have to look for it.
Here is the good.
Today, Mike and I celebrate 12 years of marriage. As the cliche goes, it has not always been easy, but I love him more and more each day. This year has definitely been the worst in our 12 years, but I can honestly say that there is nobody else that I would rather have by my side each day. I love you, my precious.

Thank you for all of the love you have shown myself and Monica since my last post. (And yes, if you were wondering, I let Monica read it before I posted it.) Her family has been through hell this past year, yet they move forward each day helping others.
Finally, our entire family is feeling immense gratitude towards the Children's Cancer Center, the Tampa Bay Lightning and Anton Stralman and his family. We were fortunate enough to be a part of a philanthropic event yesterday hosted by these two incredible organizations. Our family was honored to even be a part of the day, but everything we experienced went above and beyond our expectations. Anton, his wife Johanna and their children were lovely! It was an absolute joy to spend the afternoon with them. Thank you so much to everyone that made this event possible for our family. And yes, I will share more about this on our blog soon. I just had to get our immense gratitude out there today.
Our family is blessed to see the good, and we have hope for more!

Sunday, December 11, 2016

Bigger than Us

If you let it, cancer will change you.

For the better.

This is a long and winding story. You may know some parts of this story. Heck, you might have even been a part of this story. Still...please, come along for the ride.

Several months ago, my dear friend Jill Reagan Healey called me to check on Ellie and our family. We talked about Ellie's current treatment at the time and updated each other on our families. The conversation probably lasted around 20 minutes, and it was a precious time. You see, I hardly ever get to talk on the phone. It is such a rarity around our house, that I almost believe my girls have no clue what I'm doing. "'s talking. She must want to talk to me. I'll go ahead and engage her and ask her a bunch of questions that cannot wait to be answered." I'm pretty sure that this is probably what goes on inside their head. So, I remember this conversation well, because it actually happened. Now that I think of it, Eva and Nora were probably at school and Ellie was napping. Yes, this makes much more sense.

We had a lovely time chatting, but the conversation was coming to an end. Right before we were ready to say our good-byes, in the most casual way possible, she said, "Oh, Monica Martino should be calling you soon. She saw my post about Ellie on Facebook and contacted me. She wants to help families in Tampa that are going through a pediatric cancer diagnosis." 

Dumbfounded, all I could get out was, "What?! Does she know it's me?"

Let me back up a minute and explain two very important things.

Number One
Monica and her husband Ryan, have two daughters, Nina and Emmi Grace. In mid-April of 2016, the same time Ellie was diagnosed with ALL, Emmi Grace was diagnosed with an extremely aggressive brain tumor, ATRT. She was 3 1/2 months old. 

I knew Monica back in college, but had not kept up with her over the years. We had plenty of mutual friends on Facebook, so I was able to keep up with Emmi Grace's updates. I would sob over her posts. I thought I had an idea of what she was feeling and going through, because everything hit so close to home at that time. But honestly, I know that I truly had no clue. 

From the outside, pediatric cancer looks and sounds the same. But I assure you, once you are inside that world, everything is different. The spectrum of pediatric cancer is so vast. It's not even linear. Even with the same diagnosis, the processes and outcome can vary wildly. Ellie had the "good" cancer.

Emmi Grace did not. Two months later, at just 5 1/2 months old, she became the victim of this terrible cancer. She took her last breath on June 10, 2016. 

I've learned that offering sympathy can be a tricky thing. Often, people offer words to make themselves feel better, not necessarily caring about your situation. I can spot these a mile away. I received a handful of these when Ellie was first diagnosed. I did not want to be that for Monica. So I wept for the loss of Emmi Grace, but I stayed silent.

Why exactly?

Well, that brings me to...

Number Two
I was pretty certain that if Monica had a short list of people that she never wanted to see or talk to again, I was pretty close to the top of that list.

Let me back up some more. Remember how I said I knew Monica from college? Well, our encounter was brief and did not end well.

In 2002, I was the President of my sorority, Alpha Delta Pi, at the University of South Florida. The previous fall, Monica joined our sorority. Instantly, I was smitten, and so was everyone else. Monica was beautiful, outgoing, vivacious, well spoken...a true catch in sorority world! Plus, she wore turquoise eye liner. So cool. She was friendly and so much fun to be around.

Well, as it turns out, Monica had a little too much fun. As a member of our sorority, there were some (ok, many) rules that had to be followed. If the rules were broken severely enough, then you could get kicked out. Monica was at this point. As President, it was my job, along with a few other people, to follow through with the consequences. Monica was going to be kicked out of the sorority. It was not a popular decision.

Even now, 14 years later, I remember almost everything about that evening so vividly. In the moment, I thought I was doing the right thing. Everything seemed so black and white. Even after getting yelled at and cussed out by several people, I stood my ground. But to be honest, I felt terrible. That was the single worst experience I had as President. After a while I realized it was because I felt like I had let Monica down. I should have tried to help her. I should have tried to understand. 

So, that was it. I never saw Monica again. Our last encounter was a terrible one, so I genuinely felt that she would never want to talk to me again, much less see me. Which brings me back to my question to Jill.

"Does she know it's me?"

"Yes. She will be getting in touch with you soon."

What?! I had never been more confused in my life. So I told Jill, "Ok. But I'm honestly not expecting her to call me. So if she doesn't, I won't hold it against either of you."

Within a week, Monica called me.

We talked for 45 minutes. (That was definitely during a nap.)

Surreal is the only way that I can describe that conversation. We caught up and talked with such ease. Mostly about cancer, but also catching up with one another. She offered to help our family in any way that she could. She asked questions about Ellie, really trying to understand her diagnosis, which was so different from Emmi Grace's. Finally, it was clear that the conversation was coming to an end, and then it happened. The elephant in my room was addressed. 

(I'll do the best I can to remember.)
Monica: "Jill said you though it would be weird if I called you. I don't understand why you would think that?"

Me: "Ummm...because of what happened in college. How I kicked you out of the sorority."

Monica: "You were right."

Me: "What?"

Monica: "You were right to kick me out of ADPi. There were rules, very clear rules. And I definitely broke them."

Me: <silence>

Did you notice how I said the elephant was in my room? Because it certainly was not in Monica's. In my mind, she had every reason to despise me. But she didn't. She remembered that time very differently than I did. Beyond that, she never held a grudge against me, and was more than eager to help my family so many years later.

Monica: "You were right. It was a wake-up call for me. It took some time, but that helped to change me. I don't know how many people I've told that story to over the years."


Mind blown.

But, that's GOD. That's our Heavenly Father working all things for good. Taking something so gut-wrenching and awful, like cancer and death, and bringing good. Bringing peace. 

Throughout everything that has happened since Ellie was diagnosed with Leukemia, this has probably been one of the most profound. It has changed me in the best way possible, and definitely made me learn a life lesson or two. 

As I write this, it is December 10th, 2016. Exactly 6 months from the day that Emmi Grace Angel died. Her first birthday will be December 22, 2016. This is a blessed little girl. She has an amazing family that are doing everything they can to keep her legacy alive, help other pediatric cancer families, and fight to find better treatment for ATRT. 

If you are in any way able to help them, please visit their website: Emmi Grace's Angels.

Since that initial phone conversation, we have spoken at the Children's Cancer Center Fall Stampede, texted several times, and even went out to dinner together.

And, just in case you need to see it to believe it, here we are together. If you knew either of us in 2002, you would know exactly how unlikely this appears. But all of this is bigger than us, and I am so grateful to Monica and her family.

Thursday, December 1, 2016

Life Lately

Thank you so much for your continued love for Ellie and our family. We are thankful that you have taken the time to read about Ellie. We are blessed and are so thankful for one another. This picture isn't perfect, but neither is our family. Still, we are grateful.

Thanksgiving was a great day filled with family, food and fun. We were so grateful that everyone was willing to come to our house AND help with so much of the food and clean up. Ellie still had ulcers which prevented her from eating much, but she was certainly in better spirits. Most of the food she ate was....white.

She did not want me taking her picture.

Then, she forced a side smile for me.

A marginally better smile, but still refusing to look at the camera.

We gave her whipped cream for dessert.
And to be honest, she didn't eat much of it.

We spent the weekend decorating for Christmas, and even ventured out for a picnic lunch and playtime at Curtis Hixon Park in downtown Tampa.

I spy Daniel Tiger!

Cuddled up on the couch watching a show.

Ellie was scheduled for chemo on Tuesday morning, so we were bold and went out to eat dinner at Chick-fil-A on Monday night. Inside the restaurant! NOT the drive through! It feels weird bringing Ellie to such a germ-y place, but we knew that she was slowly getting stronger. The risk felt safe, and the girls were so excited. Besides, it's not like they went in the play area. They may never go in one of those again. 

The next morning it was off to the hospital for Ellie's last round of chemo for Interim Maintenance 2. Once she makes it past this, we have been told that life finally starts to appear normal again. We will see. 

Sparkly headband and tights!

Again, there is no looking at the camera for pictures right now.

Last chemo for several weeks!

Now that Christmas season is in full swing at our house, it is all anyone can think about. Especially the girls. Specifically Ellie. It's all she talks about.

"Momma, can I open my presents? Is it Christmas yet? It it a holiday? When is the holiday? Can I open my presents? Is it Christmas today?  Can I open my gifts on Christmas?"

You get the idea.

In the pictures below, she is rocking back and forth looking at the presents. And then, stroking the presents.

Oh, to feel the excitement of a three year old!

I'm not gonna lie, the past few days have been rough. Ellie has not been napping and is generally irritable all the time. Let me back up. Over the weekend, she started eating, a lot! In one day, she ate as much as she had eaten the week prior! But once she got chemo on Tuesday, her appetite slowly dropped off again. Combine that with all of the other chemo side effects and, well, these past couple of days have been hard for her. Getting back into homeschooling for the older girls had its own challenges too. Needless to say, there have been many....disagreements. 

So, in an effort to erase those from my mind. Here are two sweet pictures of Ellie from today with each of her sisters.

Thank you for keeping Ellie in your thoughts and prayers. We have a goal of making it out of this stage without another unexpected hospital visit. We know Ellie can do it!