Friday, May 23, 2014

Courage - In Her Words

Be strong, and let your heart take courage, all you who wait for the Lord!   
Psalm 31:24

Let your heart take courage.  My daughter is a living, breathing, amazing example of this.  Over the last four months, Paige has shown monumental courage and strength through very difficult and trying times.  She inspires us with her actions.  With her words.  With her faith.

Recently, Paige was assigned to write a formal opening on courage for her English/Language Arts portfolio.  Coincidence?  I think not.  After all, she is somewhat of an expert on the topic!  She gave me permission to share this glimpse into her thoughts.  It's pretty wonderful.


     Courage. Facing fear. Showing strength. In my case, this strength comes in many forms. Physical strength means dealing with the pain of chemotherapy side effects. Mental strength involves thinking about all the negative things that go along with chemo, but knowing that whatever happens, happens for a reason. Emotional strength is being able to control all of the mixed emotions that you feel when cancer makes an appearance in your life. Most importantly, my spiritual strength reminds me that God will take care of me when I need him. All of these things work as one to make me fiercely courageous.
     Fear. Courage. These are emotions that can dramatically affect how you live your life. They are characteristics that can sometimes be recognized upon people’s faces. Other times these traits hide beneath the surface. Where they go their separate ways is when fear holds you back and courage can set you free. If you let fear consume your life, you may not be able to control it. Courage on the other hand, lets you live your life freely and it opens up new doors that you never thought were possible.
     Behind true courage, fear is usually hiding. Facing your fears allows you to experience new things and opens up new opportunities. An example of this would be if you go on vacation and you want to try a zip line. You get to the top of the tower and get hooked up to everything, you look down and you want to back out. Of course, when you see other people do it and they’re okay, you decide that you can do it, and you have fun. You just used courage to overcome a fear. Sometimes there is no other choice but to be courageous. I have dealt with this multiple times throughout these last few months. Chemotherapy and its very scary side effects will not break me. 
     Courage gives you a sense of accomplishment and lets you think that you can do anything that you put your mind to. It also makes you stronger because when you do one courageous act, there can be a chain reaction of courageous events. When you use your courage, you are proud of yourself for doing what you thought was impossible. Some people can’t look over the other side of the fear wall and see what they are missing out on.
      Being courageous during cancer treatments is hard, but somehow I manage to do it anyway. A few weeks ago a had a severe reaction to a spinal tap. My legs got heavy, I couldn’t move my right arm, my speech was slurred which meant that I couldn’t talk. When we got to the hospital, they were concerned that I might have had a stroke. Me. Have a stroke. That is very hard for a 13 year old girl to hear. The doctor said that I needed a CT Scan and an MRI before they could send me to where I wanted to be, Texas Children’s Hospital. Soon after the two scans, my oncologist called my mom and told her that she was positive that it was neurotoxicity from the chemotherapy. The regular route for the chemo in the spine is for it to go through the brain, then it travels through the whole body before it is flushed out. Well, that’s not what my body decided to do. Instead, it lingered in my brain for too long and irritated the nerves causing the scary effects. There wasn’t any nerve damage, but it did scar me in ways that nobody will understand.  Through all of this my family and I had the courage to stay somewhat calm and know that God had our backs the whole time. 


Pretty wonderful, indeed.

I can do all this through Him who gives me strength.   Philippians 4:13

Sunday, May 18, 2014

What Hope Looks Like

For the last four months, Paige has dealt with things unimaginable to most teenage girls.  Leukemia diagnosis.  Chemotherapy.  Hospitalizations.  The list goes on and on, yet every step of the way, Paige has exhibited strength, maturity, and courage that reaches far beyond her 13 years.  She recently shared that she doesn't really feel like a kid anymore--that she basically skipped the teen years and went straight into adult mode.

This week Paige was given a reprieve from adulthood and allowed to enjoy some 'teen time.'  A necessary adjustment in her treatment plan resulted in a good energy level, a normal appetite, and blood counts that didn't pose immediate risks to her health.  In our world these days, this is big stuff!  We take one day at a time around here, and the last few days have found us smiling more than we have in a long time.


Dresses & Dances.  While her classmates had long prepared for the 8th Grade dance--dress shopping and planning the evening's activities--Paige hadn't even entertained the idea of attending.  Recent setbacks, side effects, and residual anxieties were still fresh in her mind.  She simply planned to enjoy seeing the pictures posted on social media, and that was it.  As we should know by now, God had other plans in mind.

When Paige's health seemed to be stabilizing, her best friend talked with her about going to the dance, if only to make a brief appearance.  My husband and I were in agreement--it would be safe for her to go.  We had one week until the dance, and the hunt for the dress was on.  Never one for mega shopping sprees, Paige went online and found a dress she liked.  We tracked down the 'dream dress.'  It was exactly what she wanted.  It was beautiful. It was the dress.  And Mom got an incredible deal--so we were all happy!

The big day arrived.  Several friends were meeting at a local park for pre-dance pictures, but nobody else knew she was coming.  Paige got out of the car, joined arms with Kassie, and walked up to say hello.  Greetings proclaiming "You look so pretty!" and "Paige, I love your dress!" were music to the ears, bringing a smile to her face and tears to this mom's eyes.  It was a bit overwhelming watching her interact with friends and just be 'one of the girls' for a while.  She needed it.  She deserved it.  She loved every minute of it.    

Fishing & Family.  Family activities these days are few and far between--especially those involving all four of us.  Movie outings must be midday when there are no crowds, so Jeremy misses out on those.  Visits to places like Main Event take place at different times: Jeremy can go on a weekend with friends, while Paige has been limited to 'off-peak' times.  We know this is just for a short time, but it's tough being separated so often.

Recently we received an invitation from The Sunshine Kids Foundation to take part in a day of fishing, family, and fun.  Excited at the prospect of spending time together as a family of four, we knew that our participation hinged on Paige's general health that day.  Events over the last few months have taught us to take things one day at a time, so we generally don't make plans too far ahead.

The day of the event arrived, and Paige was feeling great.  We arrived at the venue for check-in and were paired with our guides, who treated us to a morning of fishing on the water.  Paige had the honor of reeling in the two catfish we hooked.  We caught two stingrays as well.  One was just a baby, but the other one was giant!  Those, of course, did not join us for the ride back to shore.

We discovered different jobs for us on the boat.  Paige played the role of captain's assistant.  She helped monitor the depth finder when we were searching for a spot to drop the anchor and got to steer the boat when we moved to a different area in the channel.  We discovered Jeremy is a 'master caster.'  He loves to cast the line; he just isn't big on the waiting involved.  Boyce was the designated 'hook baiter,' and I was on photo duty.  Our guides were just as excited as we were.  They were wonderful in their interactions with Paige and Jeremy, and I think they took as many pictures as we did!

Lunch was waiting for us upon our arrival back to shore, and a brief awards ceremony followed.  After thanking our guides and event organizers for a wonderful day, we headed home.  It was a day we will remember for quite some time.  A day to spend time together as a family.  It was incredible!


God is doing such a mighty work in Paige.  Restoring her health one day at a time.  Giving her courage to confidently attend a school event rocking the bald head look.  Providing calm assurance that she can safely make her way onto a boat and out onto the water for a family fishing outing.

Laughter and smiles created memories that will remain with us for a long time.  It was a beautiful glimpse into days yet to come.  This is what hope looks and feels like, my friends.

As for me, I will always have hope; I will praise you more and more.   
Psalm 71:14

Saturday, May 10, 2014

Mother's Day Musings

Today marks four months since Paige's leukemia diagnosis.  Four months since I came to the realization I could not fix what was wrong with my baby girl.  As a mother, I don't know that I have ever experienced a more helpless, fall-to-my-knees kind of feeling.  Handing this over to God was the best--and to me, the only--decision.  He has since given me peace that Paige will be healed, hope that is renewed each day, and strength that surpasses anything I could have on my own.  Our journey is not an easy one, but it will end in victory!


Tomorrow is Mother's Day.  For the last several years, our family has followed a schedule of sorts: give Mom her gift(s), go to church and lunch together, and top it off with a visit to Grandma's house.  I love working with the kids to be creative with Grandma's gifts--last year we even combined a few apps to create a pretty great video greeting.

Confession time: Mother's Day sort of snuck up on me this year.  Our usual routine is not possible due to our current circumstances.  Paige, Jeremy, and I were able to do some online shopping for Grandma's gift a few weeks ago and agreed on something we knew she would like.  However, there is no crafty card, no techie treasure to send her way.  We simply ran out of time.  Chemotherapy treatments, hospitalizations, and scary adverse reactions have consumed much of our time the last several weeks.  Funny thing, though...I have this feeling my mom will understand.

Like most mothers, she doesn't expect--nor does she want--a big fuss made over one day on the calendar.  It's the day-to-day things that make my mom smile, that show her she is loved by her children and grandchildren.  Texts to check in.  A picture drawn just for her.  Kids begging to spend the night or bake snickerdoodle cookies with her.  These are year-round gifts, and I know they mean the world to my mom.


I thank God for my mother.  I admire her perseverance in the midst of storms that have come her way.  She exemplifies strength and a fierce love for her family, traits no doubt handed down from her own mother.    She is amazing.  She is my hero.  Happy Mother's Day, Mom! 

Sunday, May 4, 2014

The Roller Coaster Ride Continues

Talk about a week of ups and downs!  Less than two hours after I published the last entry to this blog, we experienced quite possibly the scariest moment since this journey began.

By Friday morning (four days after her hospital release), Paige was finally starting to feel more like herself.  Her energy was coming back, and she was ready to hang out with her grandma for a while.  The timing was perfect--Paige could get out for a bit, and I could head up to my school for the first time in almost four months.  They were hosting a barbecue fundraiser benefiting our family and that of another student recently diagnosed with leukemia.

Everything started out just fine.  Paige was working on algebra notes and homework at my mom's house, and I was catching up with friends at work.  About 30 minutes in to my school visit, I received a call from my mom letting me know that Paige's legs started feeling very heavy, and she was having trouble 'walking it out.'  I decided to sign Jeremy out a little early so we could check on his sister.  We've become accustomed to minor muscle issues after chemotherapy treatments, so I wasn't overly concerned at that point.  That would soon change.

Once Jeremy and I were on our way, I called my mom to check on Paige.  In a 10-minute span of time, she could no longer get to a standing position or raise her right arm.  Just a few minutes later, her speech became so slurred it was a struggle to get one or two words out.  I tried to remain calm (I did have Jeremy in the car with me, after all) and called her oncology nurses as I raced to my mom's house.  The plan was to call 911 and have her transported to TCH as soon as possible--she was experiencing an extreme reaction to the previous week's chemotherapy.

Due to protocol of EMT services near my mom's house, we were unable to be taken directly to TCH. Instead, they took us to a closer hospital, where Paige would have to be stabilized before they would release her for transport to our home away from home.  We remained in constant contact with Paige's regular doctors and nurses as she underwent an EKG, CT scan, and even an MRI to rule out the possibility of a stroke.  A stroke.  My 13-year-old daughter was experiencing symptoms that could be a stroke.  This was just a bad dream, right?

When Paige's oncology doctor called to tell me she was sure this was a reaction to a procedure from the previous week, it eased my mind--a little.  She assured me that we should see the symptoms fade over a short period of time.  While I did my best to rationalize everything I was being told, the fact remained that I was still watching my daughter struggle to speak and move her body.  Over the next few hours, the symptoms did begin to subside, and we were transported to TCH once a stroke was ruled out.  As frightening as the situation was, we were so very thankful for the fact that Paige was alert and still able to communicate with us the entire time.

About five hours after the scare of our lives, Paige was resting comfortably at TCH, where she was admitted for rescue medications and monitoring.  We saw significant improvements the next morning, and she was up walking the halls with a physical therapist later in the day.  In less than 48 hours, we ran the gamut of emotions and prayed without ceasing.  I know beyond the shadow of a doubt that God was in control the whole time.  He held Paige in one hand and held the rest of us up with the other.  I know it wasn't my strength keeping me from turning into a puddle on the floor.

Tonight our family of four watched a movie together and will head to bed--under the same roof.  We'd like to give the roller coaster a rest for a while.

So do not fear, for I am with you...I will strengthen and help you; I will uphold you with my righteous right hand.   Isaiah 41:10 

Friday, May 2, 2014

A Week of Ups and Downs

It's funny how the brain works.  Seems to somehow 'allow' you to forget some of the more difficult things in the past in order to move ahead.  The two week break from treatment was wonderful for Paige and our whole family.  We had time together, which is a precious commodity these days.  Paige had enough energy to get out a few days each week for 'normal' things--we even made it to a midday movie (gotta avoid those crowds)!  It was a beautiful glimpse at what is to come, but next up...Phase Three.

The first of four planned hospital stays for chemo treatment went as doctors expected.  Paige's body tolerated the high dose chemotherapy, and the excess was properly flushed from her system.  She didn't experience any major side effects or adverse reactions.  We were admitted on a Thursday evening and came home early Monday morning.  Paige was a little tired from waking up multiple times in the night for vitals, but all was good.

We got a reality check Monday evening when Paige really began feeling the effects of the chemo.  The next two days would be the roughest we have had in a while.  She was so physically drained that walking from her room to the living room was a challenge.  Wednesday evening was an emotional one--Paige was "tired of being so tired" and upset with herself for "not being brave."  I've been encouraging her to express what she's feeling at different points of this journey, but there was no way I was going to let her think she wasn't being brave or that it wasn't okay to cry.  After a long talk and prayer time, she put her head on her pillow and settled in for a good night's rest.

Paige has felt a little better each day this week as her body rests and recovers from treatment.  Her beautiful smiles have even returned!  We are praying her health and counts hold so we can do this all over again next week.  Each treatment gets us one step closer to that victorious finish!  

This was definitely a week of ups and downs, but the faith and hope we have in our Heavenly Father remains unshaken.  We have good days, and we have bad ones--but God continues to deliver us through every single one.  

For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison.   2 Corinthians 4:17

But the Lord is faithful, and He will strengthen and protect you...  
2 Thessalonians 3:3

Thursday, May 1, 2014

Moving Forward - Phase Three

After a much needed break from treatment, Paige's counts bounced back in full force to begin the next phase.  Interim Maintenance involves 4 planned hospital stays about 4 days in length.  During these stays, she receives a high dose chemo drug over a 24-hour period.  This is done in-patient so she can be closely monitored to make sure excess levels of the drug are properly flushed from her system.  Once she is cleared, we head home for rest and recovery until the next round about 2 weeks later.

Chemo administered over a full day?  72 hours of post-hydration?  It's a lot to take--that's for sure.  Our recent break from treatment delivered us to this phase physically and mentally prepared to move forward.  We arrived at the hospital with Paige's bountiful Buc-ee's t-shirt collection (her standard uniform these days) and ample activities to pass the time.  Paige even wanted to take a lap around the 9th floor to show off the fabulous pajama pants she had just completed as part of a school project.  She's come to appreciate days when she has more energy and makes it a point to enjoy them as much as possible.

Understandably, the first administration of each new chemo drug makes Paige a bit anxious.  The fact that this one was going to run over such a long period of time had her more nervous than usual.  We took time to pray that her body would tolerate the medications, asking God to take away any fear and anxiety Paige was experiencing and replace it with peace and calm assurance that she would be just fine.  Waiting on pre-hydration to finish and chemo to be prepared made for a very long evening.  It turned out to be a blessing that the drugs weren't started until late in the night, long after Paige had fallen asleep.  I kept a close eye on her for the first half hour, saw that all was indeed well, and thanked God for His goodness as I closed my eyes to rest for the next part of the journey.

And He took the children in His arms, placed His hands on them, and blessed them.   Mark 10:16