Monday, July 28, 2014

Tough Girl, Tough Week

Pray without ceasing...   1 Thessalonians 5:17

Prayer.  When I was young, it was the standard, "Now I lay me down to sleep..." and "God is great..." As I matured, so did my prayers--yet it sometimes seemed like I was doing more asking than thanksgiving.  January changed all of that.  I ask God every day to restore Paige's health, giving her strength, peace, and comfort.  I also thank Him every day for every bit of healing we have seen on this journey.  This week has been no different--though it has shown me more and more what it means to pray without ceasing.


Hospital Stay--Day Three.  The tough stuff continues.  Her temperature seemed to be on its way back to normal, but Paige spiked a fever last night--the highest since all this began on Friday.  It was determined today that some of the medications she's been taking for pain could have masked a fever earlier in the weekend.  Cause of the fever?  An infection, though thankfully not a blood-related one.  Nevertheless, any infection is an issue for those with compromised immune systems.  The current course of antibiotics should be sufficient for recovery from this.  We will remain in the hospital until her temperature 'behaves' and her doctor feels it's safe to send her home.

The leg fracture continues to cause Paige an extreme amount of pain and today included some adjustments to her pain medication regimen.  We need her to have more mobility, but that can't happen when she's in excruciating pain putting any weight on the leg.  Paige has never been one to complain of pain, so the sheer agony I see on her face and hear in her cries is nothing less than gut-wrenching.

In addition to changing the medication plan, we have some physical therapy exercises to try.  Paige is also being fitted with a boot to see if it will offer any relief.  She's actually looking forward to this--so she can try to "bedazzle" the boot!  That's my girl!  At least she's looking for the positive things in this.

It looks like there is some degeneration in Paige's hip bones and leg bones (somewhat like osteoporosis)--effects of the steroids and presumably the cause of the fracture.  Weaker bones break easier.  Calcium and Vitamin D have been added to her daily regimen, and a bone density scan will determine additional treatments and/or medications that may be needed.

Tough stuff?  Indeed.  Tougher girl? You bet!  God is bigger and tougher than all of this, and He has delivered Paige through so much already.  I have no doubt He will keep the healing going as our friends and family continue to pray without ceasing.

Saturday, July 26, 2014

A Wild Friday

What a difference a day makes.  Wait--make that 12 hours.  We arrived at clinic Friday morning ready for labs that would determine if Paige would make counts and be cleared to begin the second half of this phase.  Still in pain from the fracture in her fibula, Paige was hoping she would get an extra week of rest and recovery.  She got her wish--sort of.

Counts did not make, so a spinal tap and 3 other chemo drugs were off the table that day.  Paige had 'orders' from her doctors to go home and rest her leg, have a boring week (in the land of intense chemo treatments, boring is great), and come back next Friday to try again.  We arrived back at home, and Paige made a beeline for her spot on the couch.  It's been the most comfortable place for her since the whole fracture incident.

She'd been feeling a little tired and seemed pale in color but was otherwise fine.  When her counts are low, I often go on heightened alert.  I have a tendency to hover a bit too much, checking her cheeks and forehead to make sure they aren't warmer than usual.  Paige jokingly asked if it would make me feel better to check her temperature.  I hadn't planned on it, but she was offering--what could it hurt?  She'd been fine.  Had been.

When the thermometer displayed a temperature over the acceptable threshold for oncology patients, my heart sank and I had to catch my breath.  She'd been fine just 12 hours earlier.  Knowing I had to keep calm for her, I went into auto-pilot mode.  Actually, I've been in that mode for about a week--her leg pain has prevented Paige from getting any kind of real rest at night.  A short time of monitoring only saw the temperature rise, so after contacting the on-call physician, Paige and I headed to the hospital, praying out loud as we asked God for healing over her body.  

This wasn't our first rodeo, so we knew what to expect on arrival.  Blood drawn for labs and cultures.  Fluids--lots of fluids--pushed.  Three antibiotics begun.  Within a couple hours, Paige's temperature was normalizing--and it has thankfully kept that trend since we were placed in a room early this morning. What surprised us, though, was lab work less than 10 hours later showing a significant drop in her hemoglobin level--enough to necessitate a transfusion.  Though the process causes Paige some anxiety, she was glad when the fatigue and lightheadedness she'd experienced earlier slowly faded away and color began to reappear in her face.  Answered prayers, indeed.

Tonight we are in a holding pattern, hoping to get some much-needed rest.  We find out the results of the blood cultures sometime tomorrow and should get a better idea of when we can head home.  In addition to some rough chemo, this week should include an MRI to get a better look at Paige's leg fracture.  In the meantime, we remain faithful in prayer and continue to ask God for Paige's health to be fully restored.  For peace and comfort during times she cries out in pain and frustration.  For healing of the fracture in her leg.  For safe deliverance through the remainder of chemotherapy treatments and procedures.  For a victorious testimony that gives Him all the glory.      

For I will restore health to you, and your wounds I will heal...   Jeremiah 30:17

Tuesday, July 22, 2014

Perseverance Through Pain

As a parent, I can't think of a lot of things worse than seeing my children in physical pain.  When they were little, it was those first scrapes and bruises that made my heart hurt.  Jeremy's broken femur at just two years of age--and the cries that accompanied it--were like a shot to the heart.  Throughout the six-plus months of this journey, I have watched Paige experience varying degrees of pain in many different forms.  Respiratory distress.  Nausea.  Soreness and stiffness of deconditioned muscles.  The list goes on.  With each new challenge, there is always--always--prayer first.  Asking God to take away the pain and suffering of my girl.  Asking Him to guide the hands and hearts of Paige's doctors and nurses as they treat and care for her.  This week was no different.

In the fourth week of Delayed Intensification, Paige was scheduled for a much-needed break from the intense chemo and steroid therapy she has been receiving.  She had plans to go swimming at her grandma's house, spend time with her best friend, and just be 'free' for a few days.  You know what they say about the best laid plans...well, our plans most certainly went awry.

Last Tuesday, our family took in a charity softball game, courtesy of The Sunshine Kids and The Roger Clemens Foundation.  We had great seats and were so thankful for a family night out.  As we were leaving, Paige complained of stiffness and soreness in her right leg.  We attributed it to the fact that she had been sitting in hard stadium seats for a while, and Boyce promptly gave her a piggyback ride to the car (my favorite part of the evening, by the way).  By the time we made it home, stiffness had turned into pain.  A dose of Tylenol did the trick, and all was well the next morning.

We brought up the hip and leg issues during Thursday's clinic visit.  Paige's doctors assessed her and determined the pain was most likely a result of deconditioning from her recent steroid therapy.  She was pain-free that morning, by the way.  That night was another story altogether and was the beginning of four days of severe pain in Paige's right knee.  Heat packs, cold packs, pain medication, and rest were doing nothing to help.  She could put weight on it but experienced excruciating pain in the process.  Crying.  Sobbing.  Pleading for the pain to go away.  Each cry broke this momma's heart a little more--and as she cried to me, I cried out to God to ease my baby girl's pain and sent out a call to my fellow prayer warriors asking them to lift Paige up as well.  

Two clinic visits, three medications, and several x-rays later, we had our answer.  A healing, non-displaced fracture on the fibula, just over 2 centimeters in length.  A few weeks ago, Paige had a slight slip in the hallway and went down on that knee.  It was so quick and relatively painless that she didn't even tell me until a few days later, yet it resulted in a bone fracture.  Unfortunately, the very medications that are excellent in the treatment of leukemia can wreak havoc on the body.  This was a prime example.  Slower healing, more time on pain meds, and trouble performing simple tasks--yet through the hurt, through the tears, Paige continues to push herself in the same way she has this whole journey.  It's going to take time, but with each painful step, she demonstrates the fight and courage that has become such an inspiration to us all.  God's mighty healing hand is all over this girl.

Heal me, O Lord, and I shall be healed; save me, and I shall be saved, for you are my praise.   Jeremiah 17:14

Thursday, July 10, 2014

Month Six - Celebration Time!

July 10th.  Today marks six months since Paige's leukemia diagnosis.  Six months since our lives were forever changed.  Six months since our family learned what it means to fully stand on faith and put our complete trust in God.  This is a day of celebrating!

Yes, Paige is still receiving chemotherapy treatments--and will be for a while--but the healing we have seen since that day in January is worthy of praise.  
* A mass 16 centimeters in size--GONE.
* Cancer cells in her bone marrow--GONE.
* Spinal fluid free and clear of cancer cells.
* Count recovery via transfusions as needed.
* Rebound and recovery from a serious reaction.
* Time to rest and recover in between treatments.

As if that's not enough, there is still healing to come as God delivers her safely through to the maintenance phase in a few short months.  Once that milestone is achieved, Paige will have about a year-and-a-half left in her treatment.  This will consist mostly of oral meds that won't be so rough on her immune system, thus allowing a return to school--and a new beginning for our family.  

You see, Paige isn't the only one being given an amazing testimony.  Our whole family is, and it's pretty incredible to have the opportunity to share our stories whenever we can.  I have said it over and over--this girl is the epitome of strength and courage, and I admire her in ways I can never fully put into words.  I asked a few family members to share some thoughts about this whole journey.  It turns out we all feel the same way:

"It has been said that character isn't built in adversity, it's revealed, and I have seen this lived out in these last 6 months.  I always knew Paige was an exceptional girl, but I wasn't aware of just how exceptional until she was diagnosed with leukemia.  Her strength and her faith in the face of what she deals with on a daily basis is amazing and inspiring.  She is my hero." - Craig, Paige's Great Uncle


"Paige is my hero!  I said it from the first day that I saw her hooked up to all of the machines in the Pediatric Intensive Care Unit in TX Children's Hospital--just after her initial diagnosis--and I'll continue to say it for the rest of my life.  There is no way that a grandmother ever prepares for the news that her granddaughter has cancer, and living with that day-by-day remains a challenge, but nothing like what Paige, Amy, Boyce, and Jeremy live with every day.  To say that I am so proud of all of them barely scratches the surface.  Their unwavering faith and trust in God inspire me to my core. That's the ONLY WAY that we will all survive this--and we will!" - Elaine, Paige's 'Gramoo'


"Six months already.  In my 41 years on earth I can truly say that this has been the weirdest, longest, sleep-deprived, soul-searching, patience-testing six months ever.  Our family has forever been changed, but in a positive way.  We have learned so much about each other and know that in the toughest of times, we are there through thick and thin together--the four of us as one.  Paige, we love you so much and thank you for being the strong young lady that you are." - Boyce, Paige's Dad


God is not finished with this story--not by a long shot.  It just seemed like a great day to celebrate the amazing things He is doing in our lives!

...See this great thing that the Lord will do before your eyes.  1 Samuel 12:16

Wednesday, July 9, 2014

Faithful Friends

"A friend loves at all times..."  Over the last several months, our family has seen this verse lived out in numerous ways.  Phone calls and texts to check on us.  Cards with words of encouragement.  Dinner delivered after long days at clinic.  The list goes on.  These acts of kindness lifted our spirits on some pretty rough days, and we are so thankful for this outpouring of love and support from our friends.  Today I want to focus on one friendship in particular--that of Paige and her best friend, Kassie.

During a recent visit, I asked each girl to tell me a little about their friendship.  I didn't give them specific parameters because I wanted genuine, unprompted responses.  The only stipulation was that they could not discuss their replies.  Asking these girls not to talk to each other for a few minutes was apparently akin to some kind of torture--at least, that's the vibe I got.  They eventually forgave me for the forced silence and offered some unique thoughts on their friendship.

"Kassie and I have been friends for almost 4 years, and she understands me in ways that other people can't." - Paige

Paige's words could not be more true.  These girls have a communication style all their own--and it only makes their friendship stronger.  According to Paige, they "fight, laugh, and cry for a bunch of random reasons."  Their time together usually consists of laughter and just plain silliness.  "Crazy inside jokes" and a shared passion for all things food-related combine to form a friendship as unique as the girls themselves. 

"Our friendship means the world to me, and I don't know where I would be if we weren't friends." - Kassie

Paige's leukemia diagnosis did not weaken this bond.  In fact, it only served to strengthen this friendship.  The first few months were particularly tough on Paige--physically, mentally, and emotionally.  Friends would check on her to see how things were going, but she wasn't always up to replying.  Kassie understood that when Paige didn't immediately respond, it meant she wasn't feeling well.  She knew Paige would eventually reply, and Paige knew she could always count on her friend. 

"She has been right next to me through all of this." - Paige

"I love Paige to pieces, and I'm pretty sure she loves me just as much!" - Kassie

As a mom, I love that Paige has a friend who helps her 'forget' the leukemia and chemotherapy stuff--even for just a little while.  These girls are pretty terrific, and I feel fortunate to have a front row seat to this great friendship!  I have a feeling this will be one of those bonds that lasts a very long time! 


Therefore encourage one another and build one another up...   1 Thessalonians 5:11

Monday, July 7, 2014

Facing Her Fear

As I've mentioned in previous posts, Paige is now in her next phase of treatment.  Despite encouraging words about how each treatment gets us closer to the finish line, she wasn't exactly ready to move ahead--she was hoping for just one more week of feeling good.  She's had a month of increased energy and activity, so I really can't fault her for wanting to prolong the inevitable.  Over the past 11 days, she has received three chemotherapy administrations and one spinal tap with chemo.  Even though one of the chemo drugs had the potential of an allergic reaction and causes her extreme anxiety each time it makes its way onto the calendar, Paige made it through each one with the same courage and strength she has displayed throughout this journey.

The spinal tap, however, was going to be a true test.  As you may recall from previous posts, Paige had a very scary reaction the last time she underwent this procedure.  She experienced heaviness in her legs and right arm--to the point of being unable to use them--as well as very slurred speech.  These stroke-like symptoms resulted in a trip to the ER and a few days in the hospital.  It was determined that the meds in the spinal tap 'conspired' with another chemo treatment that day to hang around in her brain a little too long.  Thankfully, she rebounded and recovered quickly, and subsequent scans have shown no cause for concern.  Trust me when I say that news resulted in some serious praising going on around here!

Fast forward to the latest spinal tap.  Time to face a pretty big fear.  Praying over this procedure began days beforehand.  Different drug combination, more than one with anti-inflammatory properties that would serve as extra protection.  Rescue medications prescribed and in-hand.  Reassurance from her parents, doctors, and nurses that things should be just fine.  The procedure went smoothly, and Paige's body tolerated all medications administered that day.  Unfortunately, that didn't stop her anxiety, as there was still a window of 'opportunity' for another reaction to rear its ugly head.  Paige knows her body is healing.  She trusts that God is protecting her every step of the way.  She is also a 13-year-old girl who has dealt with more in the last six months than most people her age could ever imagine.

Recalling a discussion with her doctors that a reaction could occur anywhere from five to ten days after the procedure, Paige put herself on heightened alert on day five.  She began checking and double-checking her arms and legs to make sure they weren't getting that 'heavy' feeling again, and she was having trouble settling down at night to get some much-needed rest.  In fact, we reached a point where she needed a little extra help on those rough nights, and her doctor prescribed an additional medication that proved to be effective in helping her relax.  After one particularly tough night, Paige shared with me that she had been "trying and trying not to cry and get upset."  When I asked why--and reassured her it was perfectly okay to have those moments, she said she was afraid it would let people down "because everyone says I'm so strong."

Any guess as to what happened next?  Yep, this mom (through tears, of course) assured Paige that crying in no way makes her weak.  That being afraid was understandable--it was her body that experienced those effects, after all.  The important thing to keep in mind was that we couldn't let fear take over and undo all the good things we have seen so far.  Just as we have addressed every other obstacle, we would work through it together, praying for God to give us peace and the calm assurance He has provided since this journey began.


Paige, you are the strongest, most amazing girl I have ever known.  I am beyond proud to call you my daughter, and I thank God every day for allowing me to be your mom.  Strong.  Brave.  Inspiring.  Keep facing those fears, my love.  God is doing such an awesome work in you!  


Cast all your anxieties on Him, because He cares for you.   1 Peter 5:7