Wednesday, October 21, 2015

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

Thursday, October 15, 2015

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 

Wednesday, October 7, 2015

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