Thursday, December 31, 2015

2015: The (End of the) Year in Review

I cannot believe we are at the end of 2015.  Paige and I have racked up close to 75 days inpatient over the last 4 months--way more time than we have spent at home.  How can this be?  Looking back at the first eight months of the year, I would never in a million, bazillion years have thought we would be finishing out 2015 with a bone marrow transplant.

Paige was rolling along in the maintenance phase of her leukemia treatment.  She rejoined her fellow freshmen in January and rocked her classes.  She had an amazing summer filled with Sunshine Kids trips, Camp Periwinkle, and the Lighthouse Family Retreat.  Our family was even settling in to something close to normalcy.  When school began again in August, Paige was ready to tackle her sophomore year.  Then came Labor Day--and our lives were turned upside down once again.


September.  A trip to the ER for what we thought might be a thyroid issue resulted in the discovery that Paige's leukemia had relapsed.  Aggressive chemo was needed ASAP.  To say we were devastated is an understatement.  I thought the original diagnosis was scary.  Relapse sent that fear into another realm altogether.  Conversations are much different.  Treatment is much harder.  It was not going to be an easy road, but Paige's medical team was determined to come up with a treatment plan that would give her the best chance to hit remission again.  A bone marrow transplant would have to follow since the relapse occurred while on treatment.  The race was on.  Paige began chemo while the search for a donor began.  I spent much of the month on autopilot, taking care of Paige but unable to do much else.  The second time around hit me so much harder--maybe because there was no sign whatsoever that the beast was back.  Maybe because my baby was finally starting to feel 'normal' again.  Whatever it was, I had a heck of a time pulling myself together.  Thankfully, Boyce was there to literally pick me up off the floor (on more than one occasion) and remind me God was still in control.  That He had not left Paige's side.  That He would give us the strength to get through this once again.
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

October.  We saw significant progress after the first round of chemo, but Paige was not yet in full remission.  The decision was made to repeat September's regimen.  She would go through 5 more days of hardcore chemotherapy.  Life outside the hospital moved on as our world was once again consumed with battling nausea, extreme fatigue, and various neuropathic issues.  Physical therapy kept those muscles moving, as some days it was difficult to simply get out of bed.  Through it all, Paige's attitude remained unchanged.  She just wanted to get it done and over with so she could move on.  The girl knows God has big plans for her life, and she was ready to once again experience life outside the walls of the hospital.  It never ceases to amaze me the strength God gives this girl to face everything that comes at her.  I want to be like her when I grow up.
I can do all things through Him who strengthens me.   
Philippians 4:13

November.  After 2 rounds of chemo, a small percentage of leukemia blasts remained in Paige's bone marrow.  Because her best chance for a full recovery hinged on getting rid of all detectable leukemia cells, the medical team decided a third round of chemo was necessary.  This would be the round of all rounds, as Paige was to receive the 'big guns' of chemo over a 6-day period.  She had received all but one of them during frontline treatment, so we had an idea of what lay in store.  These medications are tough when given on their own.  Together, they would make my girl sicker than I had seen in almost 2 years.  All she wanted to do was sleep.  All I wanted to do was cry, and I knew that wasn't going to do either of us any good.  Morning runs around the medical center gave me a chance to clear my head and get in some good, focused prayer.  It was amazing how renewed and restored I felt after those times.  Coincidence?  I think not.
Cast your cares on the Lord and He will sustain you...  Psalm 55:22

December.  A few nights after our last hospital discharge, we received word that Paige's bone marrow biopsy showed negative MRD (Minimal Residual Disease).  Simply put, the leukemia cells were no longer detectable!  Remission was achieved, a bone marrow match had been located, and we had the green light for transplant.  God was working here, no doubt.

Upon admission, Paige underwent 8 days of pre-transplant conditioning that consisted of hard chemo, total body radiation, and an antibody that they treat like chemo.  This treatment plan would wipe out the remainder of Paige's immune system to prepare her for Transplant Day.  On December 18th, Paige's 2nd 'birthday' as they say in the transplant world, the donor cells were infused through her line over about an hour's time.  It was time to wait.  And wait.  And wait.  

It is December 31st, and we are currently on Day +13 after transplant.  Paige is recovering from some of the common effects that accompany a nonexistent immune system.  She is showing signs of progress.  Healing is coming.
For I will restore health to you...   Jeremiah 30:17


I wrote the following words last December, and they still ring true today.  God has met our needs in so many ways this year.  Physical needs have been met through the day-by-day restoration of Paige's health.  Emotional needs have been met through peace and calm assurance only He can provide.  Financial needs have been met time and time again.  In the meantime, God, who is always faithful, continues His work in our lives.  Our trust, our hope, our everything--is in Him.  
I wait for the Lord, my soul waits, and in His word I hope.   Psalm 130:5

Wednesday, December 16, 2015

My Daughter, My Hero

What's your definition of a hero?  To me, it's someone who displays great courage and determination in the face of a challenge.  Immediately coming to mind are those who patrol our streets, rescue us from danger, tend to our medical needs, and fight to protect our freedom.  Some might think of their favorite superhero, battling the villain and saving the day.  Whether we realize it or not, we encounter different kinds of heroes every day.  As for me, I need only look across our hospital room to see a hero.

For almost two years now, I have watched my daughter go through more than many people encounter in a lifetime.  Nine months of intense chemotherapy--harsh chemicals running through her body on a mission to search and destroy leukemia cells.  Bone damage and joint pain.  Headaches and fatigue.  Losing her hair not once or twice, but now four times.  The girl who was just about independent from birth suddenly needed help doing just about everything.  Clinic and hospital rooms took the place of classrooms.  Friendships formed with fellow patients as other friends moved on.  Each part of the journey presented different hills to climb.  Each time fought with everything she had.  In no time, I saw the hero emerge in her.

After Paige relapsed in September, I discovered my daughter was more than a hero--she might just be a superhero in the making.  The road back to recovery was much rockier than any she had faced thus far.  This time around there would be no set map to plan out our journey.  There would be frequent stops along the way to check progress.  There would be new combinations of drugs to attack the leukemia cells that had returned with a vengeance.  There would be remission.

Nerves?  Yes.  Anxiety?  Of course.  She is still human, after all.  Nevertheless, Paige took this latest challenge on with the same incredible courage and determination she has shown from the very beginning.  She knows God is doing a mighty work.  Around here it's one day at time--sometimes one hour at a time.  From chemo to radiation to antibody infusions, she takes the good with the bad.  She may spend a morning fighting through harsh side effects and find herself spending an evening joking around, munching on her favorite snacks, and even tackling chemistry homework.

We are now in the home stretch of pre-transplant conditioning.  Bone marrow transplant--the next leg of this journey--is just two days away.  Paige has already made the transformation from hero to superhero.  She is strong.  She is brave.  She is unstoppable.  Is there such thing as a super superhero?  Stay tuned!

Be joyful in hope, patient in affliction, faithful in prayer.   Romans 12:12