The ABC's of BMT

I've been an educator for a long time, and I thought we had a ton of acronyms.  We've learned so many new ones on this journey, I'm thinking of making an ABC book just for them.  BMT--Bone Marrow Transplant--is the latest to add to our medical vocabulary.  Yesterday Boyce and I attended a class that gave us a general overview of the whole process.

Here's the condensed version:

1. Paige will have a PICC line placed.  Similar to the port she has in her chest, this double-lumen (fancy way of saying 2 access points) line will be inserted in her arm.  She had one when treatment first started last year and was not a fan whatsoever, but it is necessary for the many medications she will receive during her stay in the BMT unit.  Hopefully she will only have it a few months.
2. She will undergo a conditioning regimen prior to transplant.  This will consist of different types of chemo, antivirals, and antibacterials--given over several days--that will completely wipe out her immune system.  Chemotherapy throughout her leukemia treatment mostly hit the white cells--this will hit everything.  
3. The day of transplant--Day 0--was described as somewhat anti-climactic.  It is essentially an infusion of the stem cells through her line.  Then we wait.  And wait.  And wait.
4. The projected time inpatient after transplant is 4 to 6 weeks as we wait for engraftment and recovery from everything that goes along with it.  The first 100 days after transplant are crucial--and will have us under all kinds of restrictions with diet, social outings, etc.

Transplant will be a long and challenging road, but it's one we will gladly travel to get our girl healthy again.  Now more than ever, we must remind ourselves--on a daily basis--to take it one step at a time.  In the next couple of weeks we will meet the bone marrow doctor and get a more detailed look at the plan they are developing for Paige.

In the meantime, Paige and I remain here Hotel TCH.  She completed another round of hardcore chemo last week, and we are now waiting as it kicks in and sends her counts back down.  We'll be here on fever watch (and probably a transfusion or two--or more) as counts trend back up to a point it is safe to leave.  It looks like we should have a short break before our transplant admission--depending on count recovery as well as space on the BMT floor.

I know I may sound like a broken record, but Paige continues to amaze me.  Would she rather be somewhere else?  Of course, but she pushes through every bit of chemo, nausea, and pain like nothing I've ever seen.  She is a lady on a mission with a "let's get this done" attitude.  God is doing such a work in her--physically, mentally, and spiritually.  I may just have to come up with an ABC book all about the miracle that is my beautiful daughter--it'd be a best seller, for sure!

But they who wait for the Lord shall renew their strength...   Isaiah 40:31

PET Scan Pit Stop

Paige's PET scan this week provided our first real experience with scan anxiety, or scanxiety.  She has received multiple scans over the course of our journey--from x-ray to CT to MRI.  However, this one had us on pins and needles from start to finish.  Maybe because last week's CT scan still showed something there, and doctors needed a better look.  Maybe because we were newbies with this particular scan.  Maybe because we were just plain scared.  Whatever the reason, it was time to get those prayers going.  Peace and calm assurance were needed--STAT.

We set out for the hospital before dawn that day with a car so loaded there was barely room for its passengers.  The scan was scheduled first, with an office visit and chemo admission to follow.  We were directed to the nuclear radiology area, where they led us to our 'holding cell,' a room with a lead door controlled by a wall panel.  After Paige's port was accessed, radioactive glucose was infused through the line--yes, radioactive.  Its mission is to seek out active disease in the body, which lights up on the scan.  It was delivered in a lead box, the syringe was encased in lead--and it was being pushed into my daughter's line.  This was one of those moments where that peace thing came in really handy.

After the infusion, Paige had to lie still for about an hour to give the glucose time to work its way through her body.  Only one of us could be back there with her, so Boyce stayed in the waiting area while Paige and I hung out in our 'cell.'  A panel of lead, complete with a window, was wheeled  between us as we watched TV and waited to be taken back for the scan.  When the time came, I was allowed in that room with Paige as well--as long as I wore a lead apron for the duration of the scan.  I tried to take her mind off things as much as I could by playing music on my phone.

The noise of the machine, while not quite as loud as those used for MRIs,  still made it somewhat difficult for her to hear.  I followed her as the table moved through the machine, getting the music as close to her as I could.  That was yet another one of those times peace took over.  She likes to know I am right there--even when she can't see me.  Hmmm...that sounds really familiar.  I like to feel the peace and presence of God--even when I can't see it.  

Later that morning, as we waited for Paige's admissions paperwork to be processed, we found out the results of the scan.  It showed no evidence of disease--the chest mass is gone!  One obstacle down. Time to attack those last cancer blasts left in her bone marrow.  This is a tough journey, and peace can sometimes be hard to find.  It doesn't mean God isn't right there--He gave us His promise to never leave or forsake us.  We'll continue pressing on through those detours and pit stops, knowing there is a greater purpose.  It may not yet be in our line of sight, but we will get there.    

Be strong and courageous.  Do not fear or be in dread of them, for it the Lord your God who goes with you.  He will not leave you or forsake you.   Deuteronomy 31:6 

One Month Later...

Today marks one month since our world was turned upside-down with yet another cancer diagnosis.  Twenty months into treatment, Paige's leukemia came back with a vengeance.  A new mass had silently begun taking over her chest while cancer blasts multiplied in her bone marrow.  Fast forward 30 days.  We have not quite hit remission, but there has been significant progress.  The mass is much smaller.  The blasts are much less in number.  And I am thankful.

After what became a small battle to get Paige comfortable leaving the hospital, we came home for a break before the next round of chemo.  Not knowing how long our next stay might be, we are making the most of this much-needed time of rest.  We have enjoyed meals and game time at home--with all four of us under one roof.  Paige and I fit in some girl time as well.  We had our nails done, attended a Sunshine Kids event, and met up with friends for some art therapy.  Yes, there have been clinic visits sprinkled in--mostly to check counts--but it sure is nice to come home.  And I am thankful.

This week has seen less fun than last.  A bone marrow aspirate, lumbar puncture, and CT scan were performed to see where we stood progress-wise.  Paige has a history of spinal headaches, so we have a pretty decent game plan each time one of these procedures comes around--or so we thought.  For the past two days, Paige has experienced severe headaches she described as "so much pressure it feels like my head is going to explode."  These headaches were accompanied by extreme nausea, causing her to get so sick after today's scan that we headed straight up to clinic.  Our girl was in pretty bad shape--but IV medications for nausea and four hours of fluids provided enough relief to get us back home this evening.  She was able to keep food down tonight and is now resting.  And I am thankful.

Counts are recovering nicely, and it looks like our next hospital admission will begin on Monday.  Paige will once again receive five days of hardcore chemotherapy--a repeat of last month's treatment. The goal is to hit remission this time around and go to bone marrow transplant a few weeks thereafter.  There is so much to process with this detour that we have no choice but to take things one day at a time.  We all still wrestle with the "why" of all this--especially Paige.  "Why, Mom?  Why did this have to happen to me again?"  This was part of our conversation before prayers last night.  I simply told her what was on my heart--that I don't know why it happened to begin with.  That God must have some insanely huge plan for her life, one that we can't even begin to imagine--but one that we must trust even when we just don't get it.  That she is not fighting this alone.  This girl has an army of prayer warriors standing with her, a family that loves her more than she will ever know, and a mighty God who will never leave her.  And we are so very thankful.

Give thanks in all circumstances; for this is the will of God in Christ Jesus for you.   1 Thessalonians 5:18  

The Waiting Game

Every Monday I receive a text from our local Christian radio station.  It contains a short prayer and an accompanying Bible verse.  When I read today's message, I said a prayer and moved on about my day. Little did I realize this verse would all but shout at me later on.

First off, I must say I am so thankful for an uneventful weekend here in our home away from home.  The fevers Paige spiked on a nightly basis last week finally subsided, and we were able to discontinue an antibiotic that had been wreaking havoc on her stomach.  We joked that one of our PCA's (the awesome ladies that take care of vitals among other things) chased the fever away with her "Whip and No Fever Nae Nae" dance outside our door...that lady is a hoot!  Transfusions of red blood cells and platelets went very smoothly, and we began to see Paige's energy and appetite come back.

While we were happy to see the fever and other general yucky feelings go away, we were also hit with the realization that Paige's hair was making yet another exit from her head.  It came as no surprise considering the chemo she received a couple of weeks ago--but it certainly wasn't easy to watch again.  Her beautiful curls, which she had finally begun to embrace, were coming out in clumps on her pillow. Paige made the decision to go ahead and have us shave off the rest--just another demonstration of the incredible strength of this girl.  She is fifteen--and losing her hair for the fourth time in less than two years.  As I've told her many times before, I need her here more than we need that hair.  Besides, she does rock that bald look!

Okay...back to today's verse.  The prayer was about trusting God moving in our lives even when we can't see it.  About asking Him to calm our spirits as we wait for Him.  It's not the easiest thing to do, and I have continued to seek that peace and calm assurance I felt upon Paige's original diagnosis.  We are about three weeks in on this 'relapse detour,' and I am still waiting on that peace.  In the meantime, my head and heart are battling it out--and I'm a mess. 

We received a sort of one-two punch today.  First up was the news that after the initial round of hardcore chemo, Paige still has leukemia blasts present in her blood.  She is not yet in remission, so sometime in the very near future she will undergo another bone marrow aspirate.  This will allow her doctors to determine the safest and most effective way to get rid of the remaining cancer cells.  

Once remission is achieved, we move to the next part of treatment--a bone marrow transplant.  Boyce, Jeremy, and I were tested a few weeks ago in the hopes one of us would have that perfect compatibility.  That delivered the second punch of the day--none of us matched my precious girl, so it's on to the national registry to locate a match.  

So for now we wait.  Wait on blood counts.  Wait on procedures. Wait on a plan.  I believe with all my heart God is still working here.  A sweet friend reminded me today that He is a healer, a conqueror, a miracle worker.  Though I struggle with the 'why' on a daily basis, I will continue to thank God for the healing He has done--and the healing yet to come for this beautiful girl.

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

Rough Road Ahead

Two weeks ago my heart shattered into a million pieces with the news of Paige's relapse.  I tried really hard to focus as our doctors went over their plan to aggressively attack the cancer cells--and how it would likely be even rougher on her body this time around.  The conversations were much harder than before, and some days it feels like the tears won't ever stop.  But then they do, and we continue on this road--with its ups and downs.  Here's a glimpse into our last few days:

Up: Paige's body tolerated 5 straight days of intense chemotherapy.
Down: Fluid buildup in one lung made a chest tube necessary.
Up: 3+ liters of fluid drained led to much-improved oxygen levels.
Down: ICU time to make sure we were only dealing with fluid
Up:  We finally made it 'home' to the oncology floor.
Down: All the time confined to a bed took a toll on Paige's muscles.
Up: Physical therapy and moving more helped ease pain.
Down: Counts are quickly dropping and 'yucky' feeling is back.
Up: Our room is re-organized, and we have visited with friends.
Down: Nausea returned with a vengeance.  Shivering wasn't far behind, and we are now on fever watch.  It's coming, and it will be sooner than later.  It's a necessary part of the process as chemotherapy wipes out the good cells along with the bad.

One of the toughest parts of this evening was seeing my precious girl in tears, questioning why this had to come back when she had been doing just fine.  She even told me she was sorry I had to go through this with her again.  That one just about had me on the floor.  All I could do was hug her, stroke her beautiful curls that will soon be gone, and remind her that she had no reason to apologize for anything.  That while I had no answer as to why this happened, I do know that in all of this God is still in control.  He has a plan for her life, and it's a good one.  Scratch that--it's an amazing one.

We have a rough road ahead, but our many, many prayer warriors are lifting Paige up every day.  I believe with all my heart those prayers are helping get her over some of the bigger bumps we've encountered on this detour.  Keep 'em coming, please...this is a long journey.  It helps so much to know we have friends joining us in this fight.

Continue steadfastly in prayer, being watchful in it with thanksgiving.   Colossians 4:2

Caution: Detour Ahead

Anyone who drives has more than likely encountered one of these warnings at one point or another.  They can be quite inconvenient, forcing a longer route to your destination--but they serve as a warning nonetheless.  Too bad life doesn't have those same kinds of warning signs--signs giving just enough of a heads-up to prepare for battle.  Unfortunately, that's not the way it works.  Sometimes those detours take you on journeys you wouldn't wish on your worst enemy.

In the last 20 months, our family has experienced two significant detours--ones that could have left us questioning every step on our path, but instead have found us pressing on, no matter how difficult it is to put one foot in front of the other some days.

Paige's initial cancer diagnosis in January 2014 turned our world upside down.  Our beautiful daughter--the healthy kiddo--had leukemia.  We could no longer go forward with our planned route.  In fact, there were portions of this detour that found Paige and me on separate paths from Boyce and Jeremy.  From clinic visits and hospital stays to school and work schedules--we spent more time apart than together.  Reaching that checkpoint of maintenance therapy was indeed a blessing for us all.  We even began to settle into a type of normalcy--if there is such a thing.

One week ago--just two weeks into the school year--we hit a second detour.  In some ways this one is even more devastating than the first.  Just nine months away from the completion of Paige's treatment, an ER visit for a swollen patch around the base of the neck led to the discovery of a mass in her chest and blasts in her bone marrow.  Paige's leukemia has relapsed, and this aggressive cancer must be attacked just as aggressively.  We must go full-force with treatment to hit remission and receive a bone marrow transplant.  

This evening marked the end of five straight days of very intense chemotherapy.  Even that road map had a detour into the ICU after a procedure.  Three tough drugs given over four-hour periods each day--but it doesn't stop there.  Now, we wait.  Over the next few weeks, Paige's body will get weaker, and her counts will drop--as she slowly recovers to a point where subsequent tests will determine the progress made.

With no warning whatsoever, my girl is gearing up for yet another battle with this monster known as childhood cancer.  Can she do it again?  Absolutely!  God had her in the palm of His hand the first time around, and I have no doubt He has her again.

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

A Month of Milestones

What a difference a year makes.  Last year at this time we were in the middle of a string of hospital stays.  This year we have taken advantage of some much-needed down time.  Summer is all but over, but I can't let August end without sharing some pretty significant milestones my beautiful daughter has reached.

Camp Periwinkle.  Early in the month, Paige and her brother attended a camp for the TCH oncology patients (and their siblings) funded by a generous organization that works very closely with our hospital.  For an entire week, my girl got the camp experience she had been missing so much.  You see, before all this leukemia mess started, she was a zip-lining, rock-wall climbing kind of girl.  I'm thrilled to report she is that girl once again!  Paige came home from camp with a few bruises--but they weren't due to dropping counts.  Nope, these bruises were little reminders that the fearless, adventurous girl inside is slowly but surely returning!

Birthday Number 15.  Paige and my husband have created a sort of tradition the last several years in the baking of her birthday cakes.  From giant peace signs to 'tie-dyed' cupcakes to Minions--they have worked together to produce some pretty impressive (and tasty) creations!  Last year was different.  Weak and recovering from a leg fracture, Paige simply wasn't up to baking.  Fast forward 12 months--and the tradition has resumed.  This year's design was a simple sheet cake with a beautiful multi-colored awareness ribbon.  The theme of simplicity carried over to her birthday gifts, with good reason--Paige couldn't think of anything she really wanted or needed.  Her words to me: "Mom, really I'm just happy to be here.  You know what I mean?"  Yes, sweet girl--I really do!

Starting School with Everybody Else.  Paige received homebound instruction the last half of her 8th grade year, as well as the first half of her freshman year.  She did rejoin classmates last January, but it was quite overwhelming, as everyone had already been there several months.  Their routines had long been established.  This year, she was healthy enough to walk through those doors on day one.  The afternoon of day two would have us at clinic for chemotherapy--but I'll be darned if my girl didn't come home and rest up so she could make it back to school the next day!

It's interesting how my perspective has changed since we began this journey.  A few years ago I don't think I would have truly understood what it means to find the joy in each day, to cherish every moment we are given.  I am thankful for the healing God is doing in Paige and for the work He is doing in me--and I want to honor those blessings every day I am given.

You make known to me the path of life; in your presence there is fullness of joy...   Psalm 16:11