Faith and Fear

I've been waiting a very long time to write this blog. And, though, exciting, I've been putting it off on purpose. 

In 2 1/2 weeks, Jace will take his last spinal infusion and his last infusion since 2013. 5 days later he will take his last oral chemo pills at home. The day after that he will graduate from kindergarten and the next day he's asked to be baptized. 

Needless to say, I will be more of a mess that week than I typically am on a daily basis.  {you've been warned}

It is the weirdest thing to actually be at this point and I guess today is as good as any to post this blog. 

Those of you who've been in my audience for a while know that this day {Mother's Day} has always been hard for me. I was not super close to my mom and being adopted I already felt as though I was missing a huge part of my story by not knowing my birth mother. 

Instead of being sad, I do my best to celebrate the mother I am to my own three kids. They know it's a hard day for me and they know that I don't expect any special or expensive gift or a fancy restaurant. My favorite thing is to have a day of unplanned rest and relaxation doing what I want which mostly includes sleeping in, going for a run and writing or watching movies. 

Today, I woke up to a sweet video of Super Jace in 2011  in which I was so hopeful that he would finally say "mama" and yet he continued to say "dada." It's one of my favorite videos because of his sweet voice and how carefree those days seemed to be.  

As I watched that video, I was reminded of how we never really know just how we can be jolted by life's curves and twists. I also realized it was time to share the next chapter in our cancer journey with you all. 

You see, I've been very quiet about his last chemo date. It isn't something I wanted to yell out to the world. I've been keeping the date safe within our family and pondering on what that meant exactly. I'm planning a few surprises for that day, but we wanted to keep it intimate for our family so that we can really be in the moment instead of hosting visiting friends. 

When people find out how close he is to being "finished," they are always so excited. And so I just smile. 

It is exciting. I am so excited for him to not be dictated by a medicine schedule. I am thrilled that he will get to start doing "normal" kid things that he has not previously experienced. I am relieved for what it all means for our family and the things we are able to do again. 

At the same time, only people who've walked before me know this part: It is about to be the scariest time in our lives, too. 

To recap for you: 

• Acute Lymphoblastic Leukemia (Jace's diagnosis) has one the longest treatment plans of all the childhood cancers. I remember the dr specifically saying to us the day he had his port put in: "This treatment will be at least 3 years long since he is boy." Girls are treated in 2 years. 
• He was in remission soon after his diagnosis and after he started the intensive chemotherapy, however, that doesn't mean he stopped his treatment plan. It must be seen through to the end. 
• He has gone through 5 phases of treatment over the course of the last 3 1/2 years: Induction, Consolidation, Interim Maintenance, Delayed Intensification, and Maintenance
• Though, he will be finished with treatment, he will still go to the dr monthly for blood tests and check ups. 
• Those visits will taper off over the course of a few years, but he will always be monitored over the course of his entire life. 
• The chance of relapse is higher the first year off of treatment. 

The next season in our journey is much like being in the ocean without a life preserver. The chemo, though, harsh and difficult on him and his body was a safety net for our minds and fears. 

Now more than ever will our faith have to diminish our fears. 

We've ran this like a marathon. It's been long and grueling and some days we just didn't think we would make it. 

When he started he was still potty training. Now, he is about to be a first grader. We often joke that even though he is the youngest in our family he is sort of like the oldest. He's experienced so much life and overcome so much in his short 6 years that he really is leading our family. 

We want to thank each and every one of you for following along on this journey, for putting up with my many blogs and posts and pictures.  

There is a story in the Bible that my friend, Mandy Hall, referenced last night as we were preparing to serve at our church {Luke 5: 17-20} and I found it fitting for our relationship with all of you. 

Some men were trying to bring their paralyzed friend down before Jesus, but because they could find now way to get him in through the crowd, they went up on the roof and let him down with his bed through the tiles. 

You see sometimes when our faith isn't leading us, the faith of our friends and family is what is getting us through and seeing us to the next day. Many of you have done that for us. Your prayers and your faith and your words of victory have gotten us from that devastating day in 2013 to now. 

You cannot know how thankful we are to have all of you behind us, beside us and leading us. 

Knowing

I knew. 

There may be some reading this with doubts, but I knew Jace had #leukemia before the doctors and the blood test confirmed it. The weeks and months leading up to January 26, 2013 were a time for God to prepare my heart, mind, and faith. I had A LOT of "talks" with God and somehow I just knew cancer would change our lives. I did the bargain prayer. I did the questioning: We've been through this, and this, and this, but do we really have to do this now, too?

My conversations with God would read something like a Francine River's novel. 

I knew something in our lives would change. I just didn't know exactly what. 

10:20 pm the night of Jan 26th: I knew we had to get him to the dr immediately. I knew I would have to wake him from his sound sleep. In my core, I knew we didn't have a lot of time. As we drove the tollway to Children's Hospital in Plano, I reviewed the last few hours. 

"Jason, I know you will think I'm crazy, but I'm certain Jace has leukemia." 

"Take him to Children's immediately. Do not wait." Every medically qualified person we talked to or texted from 8 pm - 10 pm told us this after we explained his symptoms. 

As I texted 5 people, praying someone was awake to come stay with our girls (Thank you, Shelsea), I was also packing and instructing Jason to pack for all of us for at least a week. 

I wish now I'd been more sympathetic to his confused look when I told him that. There wasn't time, though, and even my head was spinning out of control at what our life would look like now. 

"He has these bruises here and the spots on his face and in his mouth that have worsened since we left our house."

It took about 1 second for us to get ushered back for the nurse to weigh Jace and check his temperature and than only about 1 more second to get us to a room and then maybe 2 seconds for the ER doctor to come. 

If you've ever visited the emergency room, you know that's not how things usually roll. 

As the doctor checked him and we held him down screaming and crying to take his blood, I knew. 

When the doctor came back in and said.......

Well,  you know what he said. Even the nurse was crying FOR us through her apology. I felt so bad for her. 

Jason dropped to his knees. 

[from Jason: "It was the scariest moment of my life. Through everything I've experienced nothing has even come close to what I felt that night. Your whole world comes crashing down. Everything you prayed for, you realize it could be taken away in an instant. Fear set in, but faith overcame. I'm so thankful for everyone who was there for us in the instant our lives changed."]

Through my tears, I nodded my head and said, "Now what?" 

The wee hours of the morning after that are not a blur. I can tell you pretty much every detail. 

I remember Jace crying as they strapped him down again, this time to the bed in order to be transported by the ambulance to Dallas Children's. 

I remember the faces of the ambulance drivers. I remember just as we loaded up, the oncology doctor ran to me and with tears and smiles said, "I'm 99% sure it's A.L.L."

Jason needed gas in the car, yet also needed desperately to follow the ambulance. I hated that we were all separated from each other. The first of many, many times. 

In the ambulance ride, from my phone I worked ravenously to set up his Caring Bridge. I knew when the sun came up, we would be overwhelmed with love, prayers and messages. 

I remember every person who dropped their Sunday plans to be by our side. I remember having to sit with the girls and tell them "Jace has leukemia." I remember planning every detail of that moment for them so they knew they were supported and loved and would be taken care of no matter what our days brought. 

In the ICU room we were assigned, we were overwhelmed by a zillion doctors asking us to repeat how we got there. 

It was also in that room after a group of men came early that morning that I saw with my own eyes the power of prayer. Hours after their visit, Jace's counts started leveling off so that he was able to leave the ICU AND the Dallas hospital and have his port surgery and treatment in Plano. This was the first of MANY answered prayers. 

We were in Dallas only 7 hours. They expected him to be there much longer. 

God is good. Every time in my life that felt like He wasn't, He proved to me that if I only trust in Him, all will be ok. ALL of that stuff I'd experienced before was only proof of why I should trust Him in all things. He never failed me, never left me. 

I knew this was no different. I knew that Jace was just as precious to Him as he was to me. 

The only control we have over anything in this life is over our attitude, our faith, and our love. 

Many days and many nights our only survival was our faith. 

Today, we know we will never be as we were before January 2013. We won't respond to people or situations the way we did before. We won't waste time worrying or fretting over what could happen. We won't take any day for granted. 

We will love abundantly. 

We are thankful in all things. 
We are thankful for 2013 and all it brought into our lives: good and bad. 

We will savor these precious moments in time with our family. 

We choose to focus on helping others who are where we've been.

We choose faith over fear. 

We know that is the only way to live. 

xoxo

I Call Myself a Warrior :)

If this is the first time you've stopped by, welcome. Originally, this blog was started to chronicle all the lessons I've learned in gratitude. But since my son, Jace's, diagnosis of leukemia in January 2013, I haven't had any time to actually blog about much of anything else and spend most of my time blogging here, posting here, or capturing our life here. 

You can go back and read posts about isolation, an amazing night out with New Kids on the Block, and my best birthday EVA! You can go back even further and find out more about why I started On the Wings of Gratitude and why I want to, eventually, write a book about how to be grateful no matter which struggles come your way (death, adoption, divorce, addiction, cancer). 

I've always been pretty open about my life experiences, but the spotlight that cancer put us in just about tops them all. We now have a platform to speak from and are more than passionate about how cancer affects and changes families just like us. 

We've decided to use this space for the month of September to spotlight some of the awesome and heroic families and kids we've met along this journey. 

As you may know September is Childhood Cancer Awareness month and we vow to remind everyone we meet  that even though it's difficult for them to process, cancer doesn't discriminate young, old, rich, poor, big, little. We don't just want you to be aware that it's happening. We want you to be aware how it's changing people, families and lives. We want you to care enough to not look away. 

So, get your heart ready to meet some of the world's biggest heroes! 

Tonight, I thought I'd give a little humor insight into our lives. This story isn't typically something I'd share on our caring bridge site and so I thought it would be best to share here. 

Thursday started off good enough. The kids got off to school and Jace woke up feeling good. He took his medicines without much of a fight and, eventually, started eating like a champ. Hummus was his food of choice. With a spoon. 

I had a meeting I had to be at that morning and so our sweet friend, Jen, stayed with Jace for a few minutes and played trains. (Note: If you want Jace to be your BFF, just play trains or cars with him and you'll have his heart for life.) 

After the meeting, I tried my best to get him to rest, but because he is Super Jace (he says "That's why I'm Super Jace!") he wanted to run around and wrestle. Yes, even after having chemo the day before. 

The time came when we had to load up and drive the short distance to pick up his big sister. Normally, this distance wouldn't be a big deal. It's truly not THAT far, but add in "soccer mom" traffic, construction that goes for miles, and a detour to just get to the school and it's a recipe for a disaster. 

About 5 minutes into our journey, Jace says "My stomach hurts BAD!" and tears followed. 

Great. Do I turn around? Do I keep going? This so wasn't in my plan. 

I kept going. I soon found myself in the car pick up line with my seat belt off, holding my sweet boy who was still crying, and trying to juggle the throw up bucket (aka a cut up milk jug) all while trying to maneuver the car around the pick up trail. 

Finally, we were through the line and parked so we could regroup for the next 1/2 of the trip home. Jace is still saying his stomach hurts and his sister is doing everything possible to soothe him as we bump along the road. 

Just when I think we are in the clear, we drive up into the garage and get  out. 

"MOM!" 

Yep. We made it, but not without the throw up bucket getting used. :) 

Everyone needed some baths, new changes of clothes and some time to rest. Thankfully, oldest sister got a ride home from her dance practice. 

Soon, I found myself on the phone for several hours trying to sort some small "dramas" out. In the middle of all of that, I learned hubby would be working until midnight and before I knew it, it was already 10 pm! 

Finally, everyone was in bed and I was exhausted. Definitely harder than a full day at work. As I took a moment to finally breathe, I saw a small shadow beside me and then heard a tiny voice say: 

"Mom, I'm hungry." 

Yep. I forgot to feed the kids DINNER. 

*sigh* 

This is just a reminder out there to all of you that trick yourself into thinking I have it altogether. 

Days later, I can tell you that even in the moments of that day and the large amounts of stress I felt coming at me in all directions, the bigger picture was that we all make mistakes, we all have a lot going on, no one is perfect, we all are doing the best we can, and tomorrow is another day! 

As moms, it's easy to fall into the traps of lies we tell ourselves or into the "mom competition" that is written in invisible ink. 

We need to remember this: 

The most important things in life are the moments we get to spend with those we love no matter what obstacles come our way throughout the day. 

In Gratitude,

Tisha

Isolation

**as posted on www.caringbridge.org/visit/jaceponcio/journal**

We never thought we'd know so many versions of this word. 

Initially, we think of Jace being on isolation because his ANC is so low. But after 7 months of the day-in-day-out, I can tell you there's a lot more to the word.

I searched and searched this week for articles and blogs on the emotional affects of families affected by cancer. Nothing.

Well, there IS stuff, but not the stuff I was particularly looking for and nothing genuinely written. It was a lot of medical research done on families who had a family member with cancer or taking chemo.

Meh.

Not a coincidence that on Friday, Jason ran into some other families who were staying in the stem cell portion of the hospital that we were. (No, Jace doesn't need a stem cell transplant, he just gets the first room available)

Their conversations to him went something like this:

"We've been going through this for 2 1/2 years. It does feel like isolation. People don't know what you're going through. Even if they think they know, they really don't unless they are in the middle of it all with you." 

"People do help with meals and gift cards and/or cleaning our house and it DOES help, but we never feel like anyone truly understands." 

"I'm a grandma and the only one who is really taking care of [him.] I don't have a car and taking care of everything is hard."

This is one of the most isolating experiences ever. The emotional toll that it all takes on us is something that can barely be put into words. It's like the 5 of us have gone to war together and really no one else can come close to knowing all of the feelings involved. We've got a bond together that no one can touch and it's definitely brought us all a lot closer together.

As I continued to think on the topic of "isolation," I began thinking of it in a deeper sense. (I know you're not surprised.)

Isolating experiences are necessary for God to mold you and make you. I think back to Esther, Daniel, Job, Noah, Mary and Joseph from the Bible. Each one of them had some sort of isolating experience(s) and many times those were the times they were touched by God for something great.

Today, during a run, I did my own little Bible study on isolation. At first it seems to be seen as negative thing to shut yourself off from the world:

"A man, having separated himself, seeks his own desire, and rages against all sound wisdom." ~Proverbs 18:1
Then, as I dug deeper I found more of what I was feeling:

"Don’t love the world’s ways. Don’t love the world’s goods. Love of the world isolates out love for the Father. ~1 John 2:15  Msg
"Before daybreak the next morning, Jesus got up and went out to an isolated place to pray". ~Mark 1:35 NLT

"He said to them, “Come with me privately to an isolated place and rest a while” (for many were coming and going, and there was no time to eat)." ~Mark 6:31 NET

Since Thursday, we've taken a step back from social media, texting, etc. If you have heard from us less, this is why. We've needed to take a spiritual and emotional deep breath. No noise, no world, just us and God. We need time to recharge, to gain strength, to have clarity and just be.

Jason and I have had this conversation a lot in the last 6 months.
We often feel out of the loop and as if we do not fit in anywhere. This isn't necessarily a bad thing, it's just something we haven't felt. It's not a secret. We don't fit in. We are different. Life has changed.

People tend to think, 'Well, Jace is doing chemo and once it's over, everything will go back to how it was before. They'll be back to who they were.'

Nope. Not even close. We will all never, ever be the way were were before. We will not respond as before, we will not live as before, we will not love as before, we will not go back to the before.  Right now it's hard for people to understand that we cannot be as available as we were before: emotionally & physically.

Typically, we believe to give 110% to everything we do, but now, we can't step up and go above and beyond at work, at church, with friends, with family. It takes some getting use to and people close to us have chosen to not be a part of our lives anymore because of the great change. We aren't angry by this, we just know that as others' seasons change from winter/spring to summer/fall, our season is leukemia, chemo, healing, and maintenance.

It's hard for others to understand how deep we've been touched by this experience. Work seems trivial, we aren't as OCD about laundry, dishes, scheduling, and on another level our passions have changed completely. We want to speak out for those who've come before us on this journey. We want to raise awareness for childhood cancer and, more importantly, we want to support the FAMILIES affected on an emotional level.

We don't know what our future holds, but we hold strong to the knowledge that God is for us and wants to prosper us and give hope.

For now, we leave you with this reading from Jesus Calling. 
July 14: Keep Walking

Keep walking with Me along the path I have chosen for you. Your desire to live closer to Me is a delight to my heart. I could instantly grant you the spiritual riches you desire, but that is not My way for you. Together we will forge a pathway up the hight mountain. The journey arduous at times and you are weak. Someday you will dance light-footed on the high peaks, but for now your walk is often plodding and heavy. All I require of you is to take the next step, clinging My hand for strength and direction. Though the path is difficult and the scenery dull at the moment, there are sparkling surprises just around the bend. Stay on the path I have selected for you. It is truly the path of Life. 

Love and gratitude,
Tisha & Jason

...A child will lead

We talk a lot in our family about being a leader and how important leadership is in life. 

We never expected our 3 year old to be the one leading US during the most difficult time of his life. 

On a rare occasion I was able to capture this moment. He often gathers us up for prayers, in addition to our morning affirmation and nighttime prayers. He speaks very quietly and clasps his hands together like this. 

It IS the most amazing thing to watch. His faith and his heart for The Lord is such an inspiring thing to witness. 

I am humbly honored to be his mom! 

Xoxox

Tisha 

For His Glory

You never expect to hear words that will forever change your life, but we all have them said to us at different times and for different reasons. 

In the wee hours Sunday morning, we learned that our sweet almost 3 year old has leukemia. 

If you know me, or this blog, you know I believe in gratitude and just as much I believe in prayer and in God's healing power. 

Many times we do not understand the "why," but even in hindsight of my own life, I know that He works ALL situations for GOOD. He can take ANY SITUATION around and turn it into an amazing thing. 

I praise him always and in ALL WAYS. Even now when I find myself in an unknown place. 

I know I'm not alone. I know that God will use this situation, as well, to show HIS GLORY and HIS MIRACLES. 

Our job is always to BELIEVE, so that's what I'm doing. Always. 

Jace's Facebook page: Grace for Jace: www.facebook.com/graceforJace

Jace's favorite song and our new theme song: 
http://www.youtube.com/watch?v=fpPZn7sjBfw

Jace's Caring Bridge site: http://www.caringbridge.org/visit/jaceponcio/mystory

#SUPERJACE #NOTHINGISIMPOSSIBLE