We Have Some Dates : )

Okey Dokey...We finally have some news.  Amanda is scheduled to report to Vanderbilt on January 13th.  She will undergo daily injections to boost her immune system.  Then on either January 18th or 19th (or both) she will donate stem cells peripherally.  The doctors determined that because Amanda is 1/2 Nick's size they would not be able to get enough marrow from her hip bones to repopulate him correctly.  So, she will give through a process much like dialysis.  It shouldn't be painful for her, but it will likely take some Godly endurance.  She will have to sit perfectly still with both arms extended for at least 4 hours, and she is more than happy to do it.  There are studies that have been followed for the last 20 years, and no one giving in this manner has been found to have long term side effects.


We don't have a firm date yet for Nick to check in, but given Amanda's schedule it is likely that he will begin the -7 day preliminaries between the 10th & 12th.  We were told that we would know all of the details by next Wednesday...so stay tuned.


It is...and will be...well.

We Are On The Move

We are definitely moving in the right direction.  We got several calls today from the transplant team, and the wheels are in motion.    Tomorrow was originally scheduled to be just a chemo & checkup day, but now it is much more.  Both Amanda and Nick will be poked and prodded from stem to stern.  The bad news is that Nick will have to have another bone marrow biopsy tomorrow.  He just had one a couple of weeks ago, and they are very, very painful.  (Please pray for that to go peacefully - It's at 3:00.)

We don't have a date scheduled for the day -7 check-in, but we were told this morning that the biopsy (which they are doing tomorrow) had to be done within 2 weeks of beginning.  So, it looks like we are about 2 weeks out.  It sounds as if it will be sooner than we thought.

I will probably have more news in the next couple of days.  However, I will share this with you.  When I awoke this morning I heard the Lord say to read John 10:10.  How sweet is that?  Just another reminder that He brings life!

John 10:10 (NKJV)

¹⁰ The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly.

I'm so glad that we serve the life giver, instead of the life stealer!!

It is well :)

To Drill Or Not To Drill...That Is The Question!

O.K...Here are the details:  Amanda, Megan, Nick & I went to Vandy yesterday.  It was a lovely day for a round trip (torrential rains and limited visibility.)  Nick's oncologist had consulted with the entire oncology team at Vanderbilt, and the unanimous consensus was that the transplant should proceed A.S.A.P.  However, the jury is still out regarding the method of harvesting Amanda's bone marrow. 

In general, pediatric patients receive marrow harvested from having drilled holes in the donor's hip bones.  Adult patients receive stem cells harvested from the donor's peripheral veins.  Nick is technically an adult, but his age puts him in the gray area between pediatric and adult for medical purposes.   Each method has its pros and cons:  The peripheral stem cell harvest provides a more aggressive attack against the leukemia, but it also produces a greater "graft vs. host" rejection response.  So, it would potentially give Nick more side effects after the transplant.  The direct bone marrow harvest has less rejection response, but does not hit the leukemia as aggressively.  The experts are not yet in agreement about which method is better for Nick.

Megan asked Nick's doctor how they were going to decide:  "Are y'all gonna sit around a big table wearing incredible hulk gloves...punching each other until everyone agrees?"  The doctor said, "Yea, that's pretty much how we do it."    In all seriousness, I'm very thankful that those who we count as wise counsel do not make decisions without considering all of the details.

Right now all of Nick's labs look great.  His platelets are in normal range, and most of his other blood work is nearly normal.  He is relatively healthy for a guy with cancer.  So, the experts leaning toward the peripheral harvest say that, because of his current strength, he will be able to withstand the increased side effects.  The other mitigating factor is that he is not yet in remission .  So, even though the amount of leukemia that remains is miniscule, he may need the added punch of the peripheral harvest to kick the remaining leukemia's hiney.  Statistically, the lack of remission greatly lessens the chance of cure, but...as I have stated before...We do not serve a God of statistics.  We serve Jehovah Rapha, the Lord our Healer!

What is next?  Even though the experts have agreed that chemo will not give Nick any further benefit, he is currently being treated with oral chemo to keep the leukemia from rebounding before the transplant.   We will go back to Vandy next week for chemo infusion, and the week after that for a lumbar puncture and chemo instillation in his spinal fluid.  After that it should be time to be admitted for the 7 day preliminary treatments prior to transplant.  The actual transplant should be mid to late January.  I knew that this was a big deal, but I had no idea how many details had to fall in line before we could get started.

The first 100 days after the transplant will be critical, and probably very difficult.  However, in the scheme of life...how long is 100 days?  We can endure anything for 100 days.  It will be next summer before we know it.  Right?

We have known for some time that Nick's blood type would convert to Amanda's blood type after the transplant.  However, I didn't realize that, eventually, he would carry her DNA in every cell of his body.  Nick's doctor remarked that about 3 months after the tranplant they would look like identical people on a DNA test.  He will still appear to be Nick, but on the cellular level he will be very different.

I don't think that I have ever understood so clearly how we become new creations when Jesus becomes our Lord.  We still look the same on the outside, but on the inside...on the cellular level...we are very different.  The death that was once rampant and sure in our lives is obliterated.  We exchange the DNA of death for the DNA of everlasting life.  We give up our sin nature blood type, and take on the blood type of Jesus...the spotless Lamb of God...the only "blood type" that will insure eternity with God Almighty.

Do you realize that if you have accepted the free gift of salvation you have undergone a transplant? You are a new creation...on the inside...which is where God looks.

It is well.

No Small Task!

The news as of late last Friday is that the latest biopsy was not clean, but the transplant team feels that it is in Nick's best interest to proceed with the transplant.  He has undergone nearly constant chemo since the middle of June, and they do not believe that continuing chemo would give him further benefit.  The volume of leukemia in his bone marrow is very minute.  However, left unchecked, it will likely do what cancer does, and spread once again.  So, we will soon be proceeding with the transplant protocol.

Amanda, Megan, Nick, & I are going to Vanderbilt this Thursday, and we should return with some definitive answers about timing.  As the Mom of two of the precious people involved in this transplant it is difficult on a number of levels.  Of course, Nick's healing is at the forefront of all of our mind's.  That is the number 1, most important, priority focus in all of our lives.  However, my prayer is also that Amanda be able to continue with nursing school, and not fall behind because of her sacrifice to her brother. (Amanda is Nick's bone marrow donor.)

She has just successfully completed her 3rd semester and is scheduled to graduate next December.  This will all work out if we can get this show on the road and begin the process soon.  She is willing to proceed no matter what the cost, but I sure would like for it to work out positively for everyone concerned.

I feel like the next words out of my mouth need to be, "Nevertheless, not my will, but Thine, Lord."  That really is my attitude.  God has witnessed this all...from beginning to end.  He has the big picture.  However, I also know from His word that He very much wants us to ask for what we want, intercede for the welfare of others, and not give up...all the while being willing to maintain contentment with whatever the outcome eventually becomes.  That is NO SMALL TASK.

I have had a number of people comment on the strength with which we have handled this situation, and now seems to be about the right time to bring this up.  It is true that we have had a great measure of strength that has carried us...literally carried us through our weakness.  If you had been my dear friend who called Friday evening, you would have witnessed it first hand.  The unclean biopsy news hit me like a ton of bricks.  So, at 4:00 p.m. I just gave up, put my jammies on, and went to bed.  I didn't want Nick to see me so very sad, and unable to control the tears.  So I curled up in the covers trying to escape.  About half an hour later my cell phone rang.  I tried to brave up, but just couldn't do it.  I answered the phone...sobbing, snot and all.  Her response was to pray, and to call others to pray.  I am so thankful that God does not let us curl up and hide for very long.

The "strength" that some of you have been witnessing has absolutely nothing to do with us.  Oh yes, we are a part of the equation, but not the strength side.

II Corinthians 12:9 (NKJ)
⁹ And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.”

We have definitely been walking in strength, but just let me tell you...it is the strength that God himself has exchanged for our weakness.

I am so thankful that we serve the faithful, mighty, omnipotent God, and that He gives us the grace to let Him exchange our weakness for His might.  Otherwise, we would all just be sleeping on wet, tear stained sheets.


It IS well!

The "Worm"

It's been a long last 24 hours.  Nick has had back spasms that we just can't seem to control.  Prayer, medication, heat, cold...nothing has seemed to help very long at a time.  It has been so violent at times that it looks as though he is doing the "worm."  He did finally get to sleep early this morning.  So, I am thankful for that.  It has been a long time since he has had to endure something like this.  So, we are thankful for the respite.

I am making this entry to ask everyone to pray specifically for his back pain and spasms to CEASE, and for him to be able to rest.

He has been such a trooper throughout this whole ordeal!  His attitude is still positive.  I'm so proud of him.  The grace of God has been...and will be sufficient!

It is well!

Write Down The Vision...

We are perking right along.  Nick has had a pretty good week.  He is really ready to stop all of this isolation stuff.   His white blood count was sky high as of Monday, but we think that we know what caused it.  He doesn't seem to have any kind of infection. (Which is usually why someone's white count would be elevated.)  He hasn't had any fever, and he feels fairly good.  So, we think that it was caused by a shot that I gave him last Friday.  The shot was supposed to boost his white count following the high dose chemo.  So, we think that it was just doing it's job.

This coming Thursday is the biopsy day.  I know that I mentioned it in the last post, but it is so critical that this biopsy be clean.  I sometimes feel as though we are mountain climbers.  We know that we are moving toward the summit of the mountain (healing & restoration), but it may take us a while to get there.  So, we climb from ledge to ledge...step by step...milestone to milestone... sometimes making camp, but never ceasing to keep the goal in sight.

As I was writing the paragraph above I thought of the following scripture.  I stopped writing for awhile and read the book of Habakkuk.  I have read it many times before, but as it usually does, this portion of God's word seemed new again.   This book of the Old Testament is basically a recording of the prophet Habakkuk crying out to God about the desperate situation of the nation of Israel.  They had been pummeled, and Habakkuk was letting God know that it wasn't right...or fair...or fun...or any kind of situation that they wanted to be in. (Some how I can relate.)  So, at the beginning of chapter 2 he basically tells God that he will stand watch and await God's answer:

Habakkuk 2: 2-4
² The Lord answered me:
    "Write down the vision;
       write it clearly on clay tablets
       so whoever reads it can run to tell others.
 ³ It is not yet time for the message to come true,
       but that time is coming soon;
       the message will come true.
    It may seem like a long time,
       but be patient and wait for it,
    because it will surely come;
       it will not be delayed.
 ⁴ The evil nation is very proud of itself;
       it is not living as it should.
       But those who are right with God will live by faith

At the end of the book, Habakkuk proclaims to God that he is willing to wait on God's intervention, and that he will worship God regardless of the situation.

I think that part of what I am doing with this blog is writing down our vision so that each of you can run with us.  I'm so thankful that you are running.  The goal is in sight.  Keep on keeping on.  While we wait for the vision to be fulfilled we will continue to worship.

It is well.

There Are Good Reasons For The Highs And The Lows

Once again it's been awhile.  Since my last post Nick has been back to Vandy for high dose chemo again, and he is now home.  We are still moving on with the plan...one step at a time.  This week will likely be another isolation week.  We will get labs drawn on Monday morning to see where he stands, but for safety's sake, regardless of the results, we will assume that he needs to hang out with Glenn & I for the next week or two.  His counts should progress like they did last time.  So, we know what to expect.  There are good reasons for the highs...and the lows.

On December 15th we will go back to Vandy for the pivotal bone marrow biopsy.  If this one is clean (as we expect !!!) then we will move forward with the transplant.  Hopefully we will start with day -7 before Christmas...or just after.  One step at a time...

I am not decorating for Christmas this year, and we are really not planning to do many Christmasy type things.  We ARE planning to play a rousing game of "Dirty Santa" with the family, but other than that we are not really exchanging gifts or anything else of that nature.  We really do not know where we will be on the day that we celebrate Christ's Birthday, but what we do know is that, by the grace of God, we will all be together...whether that be here or Vandy or somewhere else entirely.  Our reasoning behind this is that we do not want to have to leave a couple of days before Christmas with Nick feeling like he left Christmas at home and made everyone else leave it behind as well.  (I enjoy all of the fluff and fru fru, but it's not the important thing right now...or ever!!  I'll make up for it next year!)

This is the scripture that I have been pondering over the last couple of days:

Psalm 23

New Life Version (NLV)

¹ The Lord is my Shepherd.
   I will have everything I need.
² He lets me rest in fields of green grass.
   He leads me beside the quiet waters.
³ He makes me strong again.
   He leads me in the way of living right with Himself which brings honor to His name.
⁴ Yes, even if I walk through the valley of the shadow of death, I will not be afraid of anything,    because You are with me.
   You have a walking stick with which to guide and one with which to help. These comfort me.
⁵ You are making a table of food ready for me in front of those who hate me.
   You have poured oil on my head. I have everything I need.
⁶ For sure, You will give me goodness and loving-kindness all the days of my life.
   Then I will live with You in Your house forever.

There really are good reasons for the highs and the lows.  I don't for one second believe that God brought this situation on us, but I surely can see Him being glorified in the midst of it.  Just as in Nick's cancer treatment...the lows kill off the good and bad cells, but the good rebounds afterward.  During the low times our faith has been tested, but it is stronger as we look back on God's faithfulness in the midst of it.  During the times that Nick is feeling well we are strengthened and encouraged, and can, once again, look back on the faithfulness of God in bringing us out of the low time.

Nick and I were having a conversation a couple of days ago about endurance.  I was trying to help him see that nothing in life stays constant.  When we were children beginning a new school year it felt as if summer would never come...but it did.  When we were thinking about Christmas during the summer it felt as though it were years away...but it wasn't.  When we were preteens, a fairy tale wedding and children seemed a life-time away...but they weren't.  In the midst of a stomach flu or a snotty cold it feels as though there is no end in sight, but in a few weeks it is a distant memory.

Right now we are in a fight for life.  Sometimes it does feel as though it will never end, but we know that it will.  The hows and whens are not within our control.  However, the thing that we can control is whether or not we choose to stick by our Shepherd along the journey.  He has seen the end from the beginning.  We choose His sight over our own.

It is well.