A VERY Special Birthday

Over the last few years, Paige has followed a little routine for her birthday.  Since I'm usually back at work, she enlists my husband to help bake and decorate her birthday cake.  One year they created a giant peace sign.  Last year's creation was a minion (from the Despicable Me movies).  The cakes always look--and taste--great, and Paige enjoys the extra time with her dad.

Today is August 11th--my girl's 14th birthday.  A bone density scan replaces cake baking this year.  The intense chemo Paige has received over the last four days means movies and board games at home while she recovers.  No birthday shopping or dinner out--and that is just fine with me.

She smiles for the future,
for she knows who holds her future.

You see, just seven months ago we received news that no parent ever wants to hear.  Your daughter has cancer.  With those few words, our world was changed forever.  Goals.  Priorities.  Everything.  Getting Paige healthy and well again--that was the new goal.  Praying and doing everything we could to make sure she would see many more birthdays--that was the new priority for our family.

This journey has had its ups and downs--that's for sure.  It is a long road to travel, but we are getting closer to finishing the tough stuff.  Completing IV chemo and getting into maintenance is a few months away, but I can already see a party in the planning!  Of course, Paige will probably insist on baking the cake--I don't doubt it for a second!

This year's birthday, while low-key due to Paige's treatments, is nonetheless a very special birthday.  My girl is here with me.  She is in remission and cancer-free.  I think those are pretty amazing gifts, wouldn't you say?

Thanks be to God for His inexpressible gift!   2 Corinthians 9:15

Month Seven - A Few Hurdles

August 10th.  Today marks seven months since Paige's leukemia diagnosis.  During this time, we have witnessed incredible healing, unimaginable strength, and extraordinary courage.  We remain thankful for everything God is doing in our lives.

Last month I wrote about the many reasons for celebrating.  This month I write asking for a few extra prayers, as Paige has encountered some hurdles on this leg of our journey.

Midway through the first month of this phase of treatment, Paige began experiencing severe pain in her right leg.  Two trips to clinic and an x-ray later, it was determined she has a hairline fracture in her right fibula.  Medication helps with pain management, and we are working to decrease the number of doses per day.  Paige is doing well with her walking boot.  It takes pressure off the leg and provides stability for increased mobility.  There is no evidence the fracture will not heal--it will just take more time.  There's that "patient in affliction" thing again. :)

A sudden fever led to a 9-day hospital stay.  Thankfully, there were no signs or symptoms of infection.  We just had to let it run its course.  The hospital admission did allow time for an MRI of Paige's leg, which showed weakening of the bones.  Steroid therapy, while excellent for treating leukemia, can really do a number on the body.  Paige will undergo a bone density scan tomorrow, after which her doctors will determine if additional medications or infusions will be added to her treatment regimen.

Finally cleared to begin the second month of this phase, Paige resumed intense chemo a few days ago.  In addition to meds administered at clinic, I administered 3 days' worth at home.  Paige must also take an oral chemo medication for the next 14 days.  Needless to say, the girl has had her fill of meds--literally.  With so much running through her system, her appetite is shot.  I'm hopeful that the next few days without IV chemo will have her feeling just a little better before we repeat the cycle next week.

This has been an emotional week for my girl.  Paige knows she is getting better.  She knows the meds are necessary--even with all they do to wreak havoc on her body.  She knows we are inching closer to that finish line.  She's just tired, but she will press on, knowing there's a wonderful victory awaiting her.

I press on toward the goal for the prize of the upward call of God in Christ Jesus.   Philippians 3:14

...we are more than conquerors through Him who loved us.   Romans 8:37

Patient in Affliction

Romans 12:12.  There's a reason this verse spoke to me at the beginning of this journey.  Over the last 7 months, we have experienced the highs and lows that are part of the healing process. The good days remind us to be joyful in hope.  The not-so-good days remind us to be patient in affliction.  Every day reminds us to be faithful in prayer.

I must admit our family has really been tested on the "patient in affliction" part the last couple of weeks.  Medications that are excellent in leukemia treatment can really wreak havoc on the body.  Weakened bones led to a fractured leg requiring scheduled medications to manage the pain, a walking boot for increased mobility around the house, and a wheelchair for longer times out and about.  A sudden fever with no other symptoms led to a 9-day hospital stay.  A temperature that stayed relatively normal during the day yet spiked each night resulted in multiple blood cultures and other markers being run.  Each test came back clear, yet although Paige was considered clinically healthy, the persistent fever was a cause for concern--and reason enough to remain hospitalized until it broke.

Our family of 4 was separated for more than a week--another test of patience.  Paige and Mom adjusting to the close quarters of a hospital room.  Jeremy and Boyce together at home and at work.  We managed a few short visits when time allowed, but it just wasn't enough.  I guess absence really does make the heart grow fonder--because these siblings really missed each other.  Of course, you wouldn't know it seeing their interactions our first night back at home. :)

Yes...we made it home today!  Paige was able to go 2 nights in a row with normal temperature readings---BIG praises to God!   We came home to finish the course of antibiotics and allow more comfortable resting and recovery before chemo treatment resumes on Thursday.  I thought we might break out in a happy dance--but Paige wasn't stable enough with that boot, so we opted for prayers of thanksgiving once we made it to the car.  Many prayers of thanksgiving as God continues to heal this girl.

Times get tough, and this journey is not an easy one--not by a long shot, but our family is doing our best to live out Romans 12:12 every day of this journey.  Joyful.  Patient.  Faithful.

But if we hope for what we do not see, we wait for it with patience.   Romans 8:25

Baby Steps

I can do all things through Him who strengthens me.   Philippians 4:13

I almost can't remember the last time I saw Paige walk with no pain.  I know it's only been a few weeks--but it's been a very long few weeks.  One of the goals during our extended hospital stay has been to get her pain under control, which would then allow us to work on increasing her mobility.  I think I can safely say we've seen some success.

An adjustment to her pain medication regimen has brought Paige a significant amount of relief.  She is now able to change positions while sitting or lying down without experiencing extreme pain.  In fact, she is taking only scheduled meds and hasn't had any 'breakthrough' pain that would necessitate extra dosing.  I've found myself just watching her as she's resting or watching television--the peaceful look on her face speaks volumes.

The introduction of a boot this week has allowed Paige to get around on her own.  She was a little apprehensive at first, but Physical Therapy staff worked with her until she was comfortable navigating the halls on her own.  They even 'graduated' her, saying she was doing so well that their job was done.  Paige is now somewhat of a pro with the boot and is getting used to strapping it on every time she needs to get up and around.  It's done wonders with taking the pressure off the injury--and giving her back some of the independence she's desperately missed.

One step at a time.  One day at a time.  Thankful all the time.

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.

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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.

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

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