Are We There Yet?

Are we there yet?  Anyone who's ever taken a car trip has heard--or spoken--those words.  We're all about getting to the destination.  At least, that's been my mindset lately.  First round of chemo after relapse--Are we in remission yet?  Second round--I know we're closer, but are we in remission now?  Are we there yet?!?  Think back to those car trips.  Each "No, not yet" reply gets more and more frustrating.  You just want to get there--wherever there may be.

For our family these days, there is remission.  There is getting to transplant.  There is cell engraftment.  There is passing the all-important 100-day mark.  As you might guess, we have many stops along the way as we travel toward the ultimate destination--Paige being healthy again.

We aren't there yet.  Paige's bone marrow biopsy last week still showed a slight percentage of leukemia blasts.  It was less than 1%, but the team wants it basically undetectable before transplant.  They felt the best course of action was to hit those last pesky cells with some hard chemo.  Over the course of 6 days, Paige will receive 5 drugs (some multiple times) that by themselves are rough.  She is getting them in one big block.  Needless to say, our girl is feeling pretty crummy and has spent much of the last 24 hours in bed--and we are only on Day 2.  We usually spend our inpatient days on schoolwork, games, crafts, and visiting with other friends on our floor.  We aren't there yet.

Once the block is finished, Paige's counts will bottom out yet again.  We will stay here through count recovery, which could very well mean we won't return home before transplant.  Our family is still trying to process the fact we are going to be separated longer than we anticipated, but we are keeping that end destination in our sights.  We are aiming for many more holidays together, so we will get through this season the best we can.

No, we aren't there yet--but we are on our way.  There are sunny days, and there are cloudy days.  There are stops we plan, and there are those we don't.  The journey is tough, but we stay strong in faith as we travel this road God has laid out for us.  He has a plan for Paige, a plan for our family.  We just have to wait---because we're not there yet.

The Lord is good to those who wait for Him, to the soul who seeks Him.   Lamentations 3:25

Construction Zone

Is it just me, or does it seem like there are construction signs everywhere?  Take a short drive--you'll see what I mean.  They notify us of impending improvements and warn us of dangerous conditions.  It almost makes me laugh to think how closely that resembles daily life for us these days.  Those orange and yellow signs are around every corner.

Body Under Construction.  Over the next several months, Paige's body will undergo major renovations.  Once admitted for transplant in early December, she will face several days of conditioning that will involve more high-dose chemo as well as full-body radiation.  White blood cells, platelets--basically everything in her immune system--will be wiped out to clear space for the stem cells of the donor marrow.  After the infusion of cells, better known as transplant, we wait.  And wait.  And wait.  Once the marrow engrafts, Paige will have a brand new immune system.  We will have to take all kinds of precautions to keep her healthy and safe while her body adjusts to this 'extreme makeover.'

Home Improvements.  We are blessed to live within relatively short driving distance to the medical center, which means that Paige will be able to spend time recovering at home after she is discharged.  Our house is not ancient by any means--we moved in when Paige was a toddler.  That said, there were a few things that needed some attention given our delicate situation.  Paige and her baby immune system will be highly sensitive to the smallest of things, so we have to make sure everything is just right for her return home sometime in January.  Thanks to the kindness of friends and family, these issues were taken care of in plenty of time.

Reinforcing the Foundation.  Our faith and trust in God has given this family a solid foundation.  The work He is doing in Paige--in all of us, for that matter---has strengthened us in ways we never could have imagined.  We may struggle with the 'whys' and wrestle with fears over the unknown, but those things will not overtake us.  We will not be shaken.  I keep going back to something from our pastor's message last Sunday:

"If it's good, blessed be the name of the Lord.

If it's not so good, blessed be the name of the Lord--

Because in the end, God wins."

God is at work here.  As we prepare for this time of 'reconstruction,' He is here.  Providing the hardhats and safety equipment.  Giving us strength and unexplainable peace.  He is here, and we are incredibly thankful.  Blessed be the name of the Lord.

Blessed is the man who trusts in the Lord, whose trust is the Lord.   
Jeremiah 17:7

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