Thursday, August 4, 2016

Off Treatment Means It's Over, Right?!

Look. We will be the first to tell you that we know many are tired and worn of hearing about Jace and cancer. We know people talk negatively about it and maybe even talk negatively about us. In the last three and half years, we've had it happen more times that we'd like to admit from people we've loved and thought were for us. 

We did not ask to be put in the middle of this disease and did not ask to have to miss out on so many "normal" everyday moments. We know that many care so much for Jace and maybe care not-so-much for the rest of us. That definitely comes with this territory as we've recently learned.

However, I'm fully confident that someone, including us, is learning some sort of lesson surrounding all of the above. Maybe the lesson is grace or compassion. Maybe the lesson is holding your tongue more and giving out love in lieu of criticism and judgement. The lesson might even be to find joy even when joy isn't anywhere in sight.  We've, personally, learned lessons in trust, discernment, and extending undeserving grace. 

Today as we embark on a new season, our family stands together moving slowly into a new normal while many around us will not understand the emotions and complications of this new life we are living. 

Tomorrow Jace will get his port removed. We are joyous that he will be able to experience life without it. We are excited that a small fever won't mean a rushed trip to the ER. But no matter how faithful we are, we are still human. We still pray everyday that he is cured, we ask for healing from his head to his toes, we cry out victory over his life and we hope with everything we have that he will spend many, many, many joyous and fun years living life to the fullest. We constantly have to put our faith over our fear now. 

Cancer/Leukemia will always be part of who we are. We will talk about it. We will be passionate about it. We will work to raise money for families affected by it and for research to cure it. It is intertwined into all of our individually unique life stories. 

For that reason, I will continue to give you a small peek into our perspective in the current moment. 

Our new challenges are different, but equally as daunting some days.  

One of the challenges is getting people to understand that just because Jace is off treatment and has his port removed that everything is as normal for us as it is at their house.  "Cured" in our case usually isn't used until several years off of therapy. 

Another challenge is helping others understand that many of the side effects of the many medicines that flowed through his body will not show up right away. Often learning difficulties or educational challenges take some time to show up, but we have friends ahead of us on this path and have confirmed classroom struggles that were not present before.  We've also had friends tell of unempathetic teachers or administrators who refuse to keep the kids who are off-treatment on their 504 plans while in the classrooms. (NOT in our district) As an educator, my heart so goes out to these kids and families who are struggling themselves to adjust to a new normal and still help those around them understand that "this isn't exactly over." 

Some effects do show up right away. The rash that he battles all over his body that could take up to a YEAR to go away is something we didn't even think about until now. His legs and muscles still ache and hurt and his bones are still weak. He still gets exhausted like before. 

I won't even bore you with the financial or emotional burdens we face everyday. We aren't unlike the majority of people in the world. 

There are days that we still cry overcome by the emotion of it all and moments that we feel like we can't breathe because this journey was hard. And because it was hard and we had to work everyday to keep lifting our face to our faith, we are now trying to relearn who we are now, what we like, what our relationships can be while not being surrounded by chemo. 

Off-treatment, monthly checkups and no port IS a great season to be in, but like anything else it, too, comes with it's challenges and lessons and as long as we get to do that along side of this sweet face, we will be good. 


xoxoxo



Sunday, May 8, 2016

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. 





Monday, April 18, 2016

Snack Drive! April 18-22

Most of you know that Jace goes to the clinic at least once a month for his chemo treatments. But in the very beginning of his fighting of leukemia he was at the clinic many days of the week for at least 8 hours. 

The time there is taxing even with such a great staff. 

Oftentimes, the highlight of the day for these kids is the one prize they get to pick and one snack. 





We'd love to have any donations so we can bombard our clinic goers with tons of drinks and snacks! You can drop off at Celina Intermediate School or deliver directly to Children's CCBD in Plano. 

Ideas: 

Gatorade or Sports drinks
Juice
Soft Drinks
Chips in individual size
Granola Bars
Crackers
Cookies

*Individually wrapped snacks are most appropriate for this setting! 

Thank you to all of you who are helping us love on these kids and families! 

xoxo


Thursday, January 21, 2016

Being Vulnerable

There's no bigger test to your vulnerability than cancer. 

I recently read this great article my friend, Kate Crawford, posted on Facebook the other day. 
Kate and the article come from the perspective of breast cancer, but, man, was it spot on for me, too. {Kate and her story are worth checking out here and you can find the article I read here

Years and years ago, I made the observation that many people who had lived through tragic circumstances sort of "pull away" from all things: social media, attention, social gatherings, being outgoing with new people, etc. 

Back then I curiously wondered why. 

Now, I am that person and completely get it. 

The article talks about "fighting hard" and all the ribbons and races and bravery. It talks about how those who are seemingly healthy and "look good" doesn't mean they aren't still dealing with the mental, physical, and emotional aspects of the disease. 

That article spoke to me like nothing else lately. 

This journey IS isolating. We are very, very, very careful who we trust with our true feelings about all of this. Sure enough as soon as we let someone 'in' they just as quickly cannot actually deal with it and pull away first. 

OR

I find that the normal chatter between friends about normal daily worries and such just don't apply to me at all. I don't feel like I can add much to the typical mom complaints because, well, I can't.

Last week, we were almost late to school because Jace was sobbing and sobbing. He finally told me what was wrong. He was afraid of dying. He was worried that Jason and I would die. He was worried about his teacher. He kept asking questions and for the first time I was speechless. How do you talk to your 5 year old about his fear of death? 

Yep. This is a topic we've had to tackle several times over the last few months. 

And then today when he woke slower than usual and was walking slower than usual, I had to remind myself that the big chemo dose he took last night SO affects him, his bones, his energy and his daily activity. He ALWAYS looks like he is doing great because he is #superjace has a great attitude, but he's still being treated for leukemia. He's still taking chemo. It's still VERY up front in our face even if it's not for the rest of the world. 

At the end of last year, after his two long stays at the hospital and the IV at home for a week, I entered what I would call my "angry phase." If you talked to me at all, I was pretty up front about it. The Tisha that you got was much different than the normal one. 

Our doctor is amazing (and so are our nurses) and she wasn't surprised at all that the anger hit. She also prepared us for being angry again because just as soon as Jace takes his last chemo infusion and then gets his port removed, "EVERYONE will think it's all over and it's NOT." (her words)

Many times people just don't ask. That's a whole different emotion that I  won't go into this time. 

Other times when asked how things are going you'll hear us say "We are good" not because we are necessarily good, but because it's just easier than explaining all that's actually happening. 

Currently, Jace is sleeping on the couch while his sister cries because he doesn't feel good enough to play with her. Today, she told me that a friend asked her if she had a brother that had cancer. She said it made her feel sad but also happy that someone at school cared enough to ask. It's kind of like that for all of us. 

Why do people pull away after a tragedy or long term illness? 

For us, it's a safer place. We can be vulnerable with each other free of judgement. 

Staying off of social media prevents us from comparing our lives to others. 

Avoiding large social settings prevents the large amounts of anxiety that any of us have at any given time. 

We've become very guarded because we are all still working it out as we go. 

Meeting new people is difficult because you simply just don't want to share everything to people who haven't earned the right to be in "the circle." 

....And this is where we are right now...still working on embracing our vulnerability. 

Thursday, December 31, 2015

What You Believe, Manifests.

Last year at this time I decided to come up with a personal manifesto rather than a "resolution." 

My 2015 Manifesto was the following: 


Be intentional
Guard your heart
Believe
Be You
Laugh & Love
Be brave  & Passionate
Pray
Find Thanks


The list above actually played itself out for me. I became more intentional about my time, my words, my actions and my faith. I learned through some situations that guarding my heart from certain people was necessary for my well being. I became disciplined in my prayer and in that saw my belief increase. "Ask and it shall be given" (Matthew 7:7) became a daily prayer of mine and just like always God showed up and showed me how BIG He really is. I learned to be myself and not play small to those around me. What you see is what you get with me and I'm choosing to "sugar coat" things less. I learned to embrace all sides of myself more than ever. As always, I struggled to find thanks in everything, but the blessings always outweigh the struggles. 


For 2016, I came up with a new list to add to the previous list and am SO EXCITED about it.

I want to be better at seeking WISDOM this year because wisdom is probably the most worthy treasure a person can have. 

I want to find PEACE in the midst of whatever chaos life brings. I want to make time for more peaceful things in my life and more time for me to just breathe. 

I want to DO LIFE BIG. There's this great song on one of my Apple Music playlists that talks about doing life big and so that's my plan. To do some big things that I've never done before. 

I want to LOVE EXTRAVAGANTLY ANYWAY. I added the "anyway" because I have learned to love those in my circle extravagantly, but I want to be intentional about doing that even when I'm unsure if some in my circle may choose to walk away.  

I want to OPEN ARM PRAISE. Not just praise and be full of thanks, but I want to completely surrender to each moment and praise God for all of it. 

I want to GIVE ABUNDANTLY. This goes along with the loving extravagantly. I want to be a better giver and be able to not just give but give above and beyond what I would normally would. 

I want to FIGHT WITH PRAYER. It seems that the easy way these days is to fight with words or with silence, but I want to fight with the strongest weapons I have - my prayers. I want to pray intentionally in all situations, but especially those situations that I cannot control. 

Lastly, I want to SLAY MY GIANTS. I posted a few days ago " Fear helps you settle. Don't retreat when you see a giant in your path." I don't want to allow fear of those big wounds and potholes in my path to keep me from living fully the way God intended. I don't want to retreat, push people away or isolate myself just because something looks too hard for me to overcome. 

2016 is going to be an epic year for me and my family and we hope the same for you!



Saturday, December 5, 2015

Confessions of an Adoptee

I often feel like a poster child for the Lifetime Movie Network. 

I'm serious. 

Adoption. 
Addiction. 
Cancer. 
Divorce. 
Death

I've dealt with it all and I bring a pretty unique perspective to all things and will never, ever think like the normal adult. 

I feel like I become the spokesperson for whatever issue is at the forefront of my day. 

Being my family, being my friend is not an easy task because of that list up there. 

Today is no exception. 

Yes, it's my birthday. 

Yes, I've had some pretty amazing birthday's. (This is one of my all-time favorites!) 

Before adulthood, I LOVED my birthday. I have to admit I got some pretty incredible birthday surprises. It was a day that I celebrated and couldn't wait for each year. 

Then, I grew up. I started asking more and more about my birth parents and the circumstances surrounding my adoption. 

I did not expect to be met with anger and yelling and accusations of not loving my parents. 

All day today I've been trying to figure out why this day now brings me sadness. Last year I just thought it was because my mom had recently passed. Everyone was quick to chime in on that being the reason, so I accepted it and I moved on. 

This year I'm realizing more and more that it's because not only am I grieving a mom that isn't here, I'm also still grieving a mom and a family that I never knew. And with the death of my mom last year, many of the details I sought also died with her. 

I'm speaking out today because all I've ever heard my entire life was "You're so lucky." "You are so special." "You are so loved." "You were so wanted." "You should be so thankful."

And then when I did start having questions soon after my first child was born, I was made to feel like my questions were invalid and not as important as what the family that raised me was feeling. I was told I was being disrespectful and unloving by asking those questions. 

I began feeling like something was very much wrong with me. 

So, I sat with that. 

For a LONG time.

I was caught between wanting to know more and being afraid of hurting those that raised me. I did not bring up my adoption ever again. I did seek out information on my own and know a few of the steps it will take to get some details, but then Jace got sick and my focus became cancer. 

Here's the deal. You can read all about the families that adopt. You can read about amazing reunions between birth parents and children. But I rarely hear from the adoptees themselves. It seems that their voice is the most overlooked and ignored. 

Adoptions have changed a lot in 40 years. I have special friends who have amazing families and are amazing parents to children who've been adopted. Their stories warm my heart. 

I do want to say is that just because a child is adopted or has been adopted doesn't mean that they aren't going to have questions or might wrestle with feelings that are scary.

It doesn't mean that they won't be silently grieving a loss. 
It doesn't mean they are ungrateful. 
It doesn't mean they love those they are with any less. 

Birthdays can be hard just because it's a reminder of loss and unanswered questions.
Birthdays can be hard because they bring up abandonment issues and feelings of anger. 

Next time you are wishing someone "Happy Birthday" remember that there could be a lot of emotions wrapped up in that one simple phrase. 

Research has shown that many adoptees have built walls around themselves to keep others from getting too close. They may hide behind perfectionism, achievement, and self-sufficiency. 

I am no exception to this and constantly struggle with letting those walls weaken. My faith definitely helps with that because despite what I know about my earthly parents I still know WHOSE I am. 

39 years and He is still writing my story . . .


xoxo

Friday, November 13, 2015

What Do You Need?

It's usually the same 25 or so people that check in on us and ask "What do you need?" or "How can I help?"  We wish we had a good answer for them. Thankfully, when something crazy comes up like it has the last week with Jace ( update here )  we have a strong support of people around us lifting us up, praying for us, and bringing us meals. 

The past few weeks have definitely thrown us off of our regular routine. One with a concussion, one in the hospital, and then one sick all at the same time wasn't what we expected to be dealing with right now. 

There are many things we are thankful for aside from the strong circle surrounding us. 
It's not a coincidence that I'm in the middle of my 8th year of doing the 40 Days of Thankfulness Challenge. Last year, I had just lost my mom, had to put my dad in a nursing home and had to literally, pick up pieces of their life that were unprepared for all of that change. 
The year before we landed in the hospital with Jace for a 14 day isolation stay. 
I could go on and on. Bottom line is that every time I work at growing my gratitude, I'm greatly challenged to not be thankful. 

Jason and I don't know exactly what our lesson is this time around, but we know there is one. 
We, typically, don't know how to respond when people ask what we need or how they can help. 

Some days it all weighs so heavy on our shoulders. Some days we are too tired to even think. Some days we just want to give up the fight. Some days we just don't know. 




Many of the things that need to be done or taken care of have to be done by us: changing IV, giving meds, driving to the clinic, dealing with work not truly understanding our situation, and sleeping :) 

We WISH that others could do some of those things, but for whatever reason this is our thing to follow God through. 

We aren't giving up, but our hearts are heavy, we are worn, we are tired and most days we are just crying out to him with anything we have left.......

~t