6 months old

Today is kind of a big day. January 7. Exactly 6 months from when the stem cells from an unknown little boy’s umbilical cord were dripped into the veins of my 17 year old cancer-fighting boy. Half a year since he was re-born with another’s DNA taking over his own blood in hopes of giving him life-long freedom from anaplastic large cell lymphoma. Twenty six weeks plus 2 days since we knew that they had completely destroyed his bone marrow factory using intense chemotherapy and radiation treatments with his only chance of survival being the cells from this umbilical cord doing their job, setting up shop, engrafting, giving him life.

Six months ago, we had no idea what these 184 days would look like. They don’t really tell you just how awful it is going to be. Partly because they don’t know exactly the level of awfulness that awaits you. And partly because there is absolutely no way to fully grasp just how horrible it will be. You sort-of think you understand, because everyone keeps telling you it’s hard, but there is no way to know until you’re standing in the middle of it. To purposefully bring your child to the edge of death in order to attempt to save him with someone else’s cells and pray that nothing else breaks along the way…it is impossible to think that it would be an easy process, yet to imagine just how terrible is equally impossible.

There were plenty of extremely dark days. When kidney failure set in. When vomiting would not let up after 90 straight days. When he was in so much pain he asked to die rather than endure. When he sat awake all night long crying, hurting, hungry, scared. When he couldn’t walk or stand or sit up. When his insides bled. When his eyes turned red from blood vessels breaking. When he gained 25 pounds in a couple of days from water retention. When his face swelled, nearly closing his eyes and he stood crying as he looked at the reflection of himself, unrecognizable, in the mirror. When he tested positive for a virus and a fungal infection. When his heart filled up with fluid. When his blood counts would drop without warning. When we didn’t know what day +184 would look like.

I remember saying a million times in those hardest of days, if I just could know how this is going to turn out. I don’t know what would have changed inside of me. Less anxiety, I suppose. There is something so unleveling in the unknown. To stand with one foot on the ground of the present while holding the other up hoping to just drop it onto the ground of tomorrow. Balancing in the awfulness of now, longing to know that the next step {or one down the way a bit} will be solid & secure. Or even knowing that is will be horrible, that the world would be falling apart. As ridiculous as it sounds, to know that it will end badly seems more comforting that not knowing how it will end at all. It’s the not knowing. It is uneasy. Painful. Turbulent.

Those days taught me a lot. Maybe to be alright with the uneasy of the unknown. Maybe to wait. Maybe to trust. God sat close to me on those days. He never told me what this day {Day +184} would look like. He didn’t share that my boy’s kidneys would heal up and he’d walk again and he’d finally stop vomiting and there’d be no signs of cancer or the millions of other things I wanted to know. He didn’t crystal ball me to where I wanted to see. He simply sat beside me and listened to my cries & complaints & anger & pleas. He allowed me to feel the squeezing uncalm of those moments. Perhaps in order that I would also feel the tender calm & security of him holding me.

Today. Six months. My sweet ginger boy is doing really well. There are still a ton of unknowns. Will the cancer return? Will a new cancer caused by the treatment to get rid of this cancer appear? Will his kidneys stay healthy? Will his heart? What if he catches influenza or chickenpox or the measles? A mama could go crazy. But I try not to live in that space…rather, I try to live with both feet firmly planted in today being held securely and calmly. Remembering how well and how gently he’s carried me so far & knowing he’s not likely to drop me now.

Because of the LORD’s great love we are not consumed, for his compassion never fails. They are new every morning. Great is your faithfulness. Lamentations 3:22-23

Welcome 2018!

Welcome 2018!  Au revoir 2017.   What a year you were.
I’ve been asked more times than I can count lately, as we finished up 2017, “I bet you’re ready to put this awful year behind you, right?”
I can’t argue that I always look forward to a new year {although that’s mostly because I get a new planner}. But truthfully I’m not ready to call my last year “awful”. It wasn’t terrible or the worst or even dreadful.

2017 was hard. Challenging. Difficult. But it was far from awful.

As I look back over the previous 365 days {177 of which I count closely} I see extremes. Super high highs. And deep, dark lows. Mountains & valleys as they say. For each “cannot find my way in this pitch black forest” moment, I can find so many “dancing at the summit in celebration & joy” moments. The hardest days were definitely the absolute most difficult days of my life. But the joy-filled ones were also the most glorious. And while I would not sign up to ever do a good portion of 2017 again, the moments that rose high to provide relief were some of the most treasured of my life. And they are tucked away safely where mamas keep such special memories.
I am aware of just how blessed I am. I am a part of a club no one wants to join – the “my child has cancer” club. This group of fellow momcologist {we’re a clever bunch} provided support and sanity through so many days. And for every amazing moment we celebrate, this club also sees more than it should of grief & loss. To have my boy here, doing well & as ornery as ever, how can I ever dare to complain? How could I call my year “awful”? Really? He is starting 2018. It’s a gift & a blessing I will not forget.
I don’t know how God works. I don’t know why the world turns the way it does. And I don’t know why some people’s babies get cancer. And why some of them live & some of them don’t. It can seem like God is distant. Or careless. Or callous. Or even bad. I can understand that. But deep within me I believe that God is good. I believe that even when my circumstance are not good, he is. And I believe that he is ever faithful. I believe he has promises he’s keeping that are hope-filled and full of grace & love. And this hope is what pushed me through, carried me day after day. The dark days were very dark. Black in fact. Moments of tears mixed with fear mixed with anxiety. The unknown that squeezed around me like a vice grip that just wouldn’t release me. And yet… A whisper away, the ridiculous calm that swept through my mind touching my soul to provide a second of peace. It makes no sense, not even to me, but I felt it as real as the -20ºF day outside. It was there. A promise to strengthen. A promise to provide peace. A promise to be a refuge when the waves crashed & I could barely tread water any longer. I have experienced His carrying me. And I will never forget the strength & gentleness with which he held me. Of all the things that I have learned & of all the ways I have grown in 2017, I see this to be the greatest.
I am looking  forward to 2018. I have no idea what the next 365 days will hold. I have no control at all over how they will play out. But I will continue to hope in the promises I find in the Scriptures and know that no matter what comes my way, I am held.

Psalm 25:1 – In you, LORD my God, I put my trust.

Happy Thanksgiving 2017

 Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.  Philippians 4:6-7 [NLT]

Go through his open gates with great thanksgiving; enter his courts with praise. Give thanks to him and bless his name. For the Lord is always good. He is always loving and kind, and his faithfulness goes on and on to each succeeding generation.  Psalm 100:4-5 [TLB]

Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.  1 Thessalonians 6:16-18 [NIV]

hello again

I have begun this post so many times I cannot even count them all.  What does one say to follow up a post on God is good when life falls completely to pieces in an instant just after penning such a declaration?  How does one return to this place to write when the words they left here most recently seem completely foreign?  When the person is wrestling with whether those words are even true.  When the author herself has trouble believing that when cancer relapses God is still good.  I have re-read that post as many times as I have started this one.  Sometimes, over these past 9 months, I have held tightly to the words I wrote from when we seemed victorious.  Other times, I have looked back on those words believing they hold such hypocrisy.

Blank.

Blank seemed like the best way to leave this place.  Maybe figure things out first & then return.  But certainly not accumulate any more words here until I was sure they’d be “pretty”.  Which is exactly why 9 months later nothing has been added here.  I haven’t been able to wrap up my faith into a neat, pretty package.  My faith is no longer the noun that I display proudly as something I have.  It is now faith the verb.  It’s wrestling.  It’s struggling.  It’s silence & yelling & singing & crying. It’s praising & praying & pleading.  It’s running away & crawling back.  It is completely not understanding.  It’s anything but “pretty”.

It is well with my soul.

True.  It is all well with my soul.  But my circumstances bobbing around like a buoy in a storm scream “this is not well”.  And while the edges of my soul are crisp & neat, they do not nicely fit the tattered & fraying edges of my circumstances.  I’ve spent a good portion of my life trying to make sure those two edges fit nicely together…to present my faith package all pretty & neat.  Something that when looked upon would shine through revealing a woman of great faith.  But as the edges of my circumstances have been torn deeper day by day, I cannot make the two fit beautifully together.  They just don’t line up.  I no longer believe they are meant to.  It is one of the great lies of our modern times.   And the gaps left between my soul and my circumstances?  I’m learning that’s where God’s sovereignty lies & where I must trust.

Trust.

This word more than any other has filled my silent moments.  Do I trust Him?  Sometimes yes.  Sometimes no.  That seems so scandalous even to type.  A perfect faith package certainly has no room for distrust.  But it is true.  My life reflects it.  And I find myself in great company.  Examples abound in Scripture of people just like me…who had trouble trusting.  Even those who witnessed the Red Sea part and water flow from a rock and those who actually walked step by step with Jesus.  They all had trust issues.  I am among them.

Don’t be disheartened.  I am certainly not.  I have never sat more closely with my Creator than I have in these recent months.  Gazing on the edge of letting go of all that I attempt to control & slowly releasing my grip to surrender it to the One that knows how to make it all beautiful…it’s the greatest view.  Notice I haven’t completely handed it over.  I’m still working it through.  Maybe for the rest of my breaths.  But finding gorgeousness in the frayed edges filled by sovereignty as He puts my faith package together in His mighty hands has been {and continues to be} spectacular.

And He is good.  Still.  All the time.  Good.


Alex is currently doing really well.  We received word of his relapse on March 7.  He received chemo through a rather new immunotherapy drug followed by one round of intense traditionally chemotherapy in mid-May.  After an additional round of chemo and radiation, he received a bone marrow transplant from a donated umbilical cord blood on July 7.  Today he is 130 days since transplant.  It has been a very long and difficult 4 months!  And while every week we see improvement, we know that the road ahead is still rough and challenging.  But today Alex is cancer free.  We are grateful for that & celebrate!

The details of the transplant can be found at his caring bridge site.

 

SaveSave

He is good

Tomorrow marks 142 days since Alex was diagnosed with Anaplastic Large Cell Lymphoma.  Tomorrow marks the end of everything we’ve been holding our breath for over those past 141 days.  We sat in that room, overwhelmed with emotions I cannot put into words, listening as his oncologist explained that this is “very treatable” & “this would just be a 6 month detour” in the road.  “Soon” she said “we would be having final scans & getting back to life”.

And that’s tomorrow.  Final scan.

It was dark 141 days ago.  Although we trusted his oncologist, it only takes a quick WebMD search to see that “treatable” for oncologists and “treatable” for mamas are two very different percentages.  Knock-you-to-the-floor-fear loves to creep into the space between those two numbers.  And doubt is close beside it.  Darkness surrounds you.  It is heavy and cold and damp. It is a scary, awful place to sit, that space between percentages.  But with every passing round, improvement is made and you begin to believe & the gap of fear & doubt closes ever so slowly until it is just a crack.

Right now darkness has been overtaken by light.  Things are looking very good.  Every indication is that sweet ginger has fought hard & cancer has retreated.  Hallelujah!  God is so good.

hmmmmm…God is good.

But what if?  What if things aren’t so bright tomorrow?  What if scans come back with signs of disease?  What if sweet ginger still has cancer?  Then what?  Do we assume that God is not good?

I’ve wrestled with the goodness of God before in my life.  Perhaps we all have.  I’ve searched for how God can be a good God when my circumstances have screamed “this is not good”.  How can God be good when life is not?  When babies die and mamas die and teens get sick and tragedy strikes?  How is God good then?

“In the beginning…” it says, he created everything.  “And he saw that it was good.”  God was good and He created good things.  And everything was good.  Until it wasn’t.  And the only thing that changed, was us.  We disobeyed & the world has been in disrepair ever since.  And all these generation later, we are dealing with the consequences of those that walked before us.  And these consequences make our circumstances really, really bad sometimes.  But God has never changed.  He is the same always.  He is still as good as the day he created good things.  He is still good.

The Bible has the phrase “he is good” nine times.  {for some light reading: 1 Chronicles 16:34 & 5:13, 2 Chronicles 7:3, Ezra 3:11, Psalm 106:1 & 107:1 & 118:1 & 118:29 & 136:1}  Each of these verses says something almost exactly the same – “he is good; for his mercy endures forever”.  He is good.  But it’s not that “he is good; for he healed my son of cancer” or “he is good; for he made me have lots of money” or “he is good; for he allowed that mama to give birth to a healthy baby”.  “He is good; for His mercy endures forever”.  His character drips with mercy and grace and faithfulness and love.  God’s character is nothing but good.  God’s goodness isn’t about my changing circumstances, but rather all about His unchangeable character.  He’s not good when good things happen & not good when bad things are happening.  He is always good.  Everyday, every moment, every circumstance.  His goodness never wavers.  He is good because in the end, when everything that we hold onto so dearly with our death grip in this life is gone, His mercy will still be there covering over our disobedience.  All the junk we do that we ought not {love the phrase ought not} do will be covered by His mercy.  All of it.  And that will be very, very good.  Forever.

Do I wish my circumstances to be good?  Absolutely! But if they are not and I am staring at the darkness, He is still good.

February – NT in 2017

We did it.  If you’ve been reading along, join me in celebrating reading through two full books of the New Testament and a good way into a third.  It’s amazing.  Many verses have been familiar, but have also hit me fresh – smacking me upside the head when necessary or stirring things around in my heart in new, fresh ways.  That’s what’s so wonderful about the Word.  Don’t get me wrong, there have been days that have been more along the lines of “hmmmm  nothing.  Well, at least I read the chapter.”  It’s not all overflowing emotions all the time.  At least not for me.  There are desert moments along with the dessert ones.  And just because everyday isn’t a sundae with whipped cream and a cherry on top does not mean that something’s wrong.  It just means that some areas God really wants me to see, feel & let settle in the depth of my soul today & some He’s waiting until another day to reveal to me.

A new month.  Are you ready?  If you haven’t gotten your “Make It A Great Week” sheets for February yet over at Etsy, here they are for your printing enjoyment.  Again these may not be perfect.  All are designed to print on letter size paper in the color you see.  All can also be trimmed to a nice 7×9.25 size to fit neatly in your Happy Planner after you’ve punched them with your handy Happy Planner puncher.  {best purchase!}  And if you’d rather not use all your printer ink, feel free to head over to the Etsy store & let me do the printing, trimming and punching for you.

February looks to be a great month of reading.  We’ll finish up 1 Corinthians & read through 2 Corinthians then jump into Mark.  So many opportunities to learn & grow in the days ahead.  You with me?

submission:: like a four letter word

If you’re reading along with the New Testament in 2017 reading plan, you know today we find ourselves in 1 Corinthians 11.  Paul is continuing to address questions that the Corinthian people have asked him.  Today we find instructions for worship & order at the Lord’s supper.  Seems simple enough…

Not quite.  Beginning in verse 5 we see Paul’s instructions regarding women covering their heads during worship services.  Specifically if she is praying or prophesying.  Hmmmm.  Head coverings?  I would love to just fly over this part of Scripture, call it irrelevant & move on.  But something holds me here.  Makes me pause to consider “should I be wearing a head covering at church?”

On the surface the answer appears to “yes”.  Paul is pretty darn adamant.  “But a woman dishonors her head if she prays or prophesies without a covering on her head, for this is the same as shaving her head.”  Yikes!  But let’s dig a bit deeper into the meaning behind Paul’s instruction.  Paul’s message in these few verses is pretty clear from the get-go…Authority.  The head of man is Christ.  The head of woman is man and the head of Christ is God. {vs.3}  I realize that this is not a popular world view.  I am not writing this, just copying the Word.  And Paul clearly states that there is an authoritative chain-of-command.

With authority there comes submission.  Everyone cannot be in authority.  Someone has to lead.  Someone has to be submissive or follow.  According to this part of scripture and others like it, God establishes this lead/follow structure pretty clearly.  God leads Christ.  Christ leads man.  Man leads woman.  {I know.  Not a popular world view currently.  But Biblical nonetheless}  And in the culture that this was written, one way that signified submission was head-covering. It was not an uncommon practice nor was it thought to be out-of-place.

Today, however, head covering is not very common {at least in Western Judeo-Christian  cultures} and certainly does not necessary signify submission to my man.  If I were to suddenly begin wearing a head covering to church on Sunday, I would cause quite a stir.  No one would associate my wearing a head covering with submission. At all.  And in fact, I might actually feel incredibly uncomfortable, perhaps even embarrassed.  Paul’s instructions regarding head covering were intended to show submission not bring about embarrassment.  In order to fulfill the spirit of the instruction {showing submission} it seems more likely that a culturally relevant way to show submission would be a better fit.

What does that look like? I’m not sure, to be honest. For this, I don’t have an answer.  This is one of those sections of Scripture that may require some searching & praying to discover.  I’m not willing to just toss it out as irrelevant & move on though, because I believe that if it’s in the Word, it is important somehow to me today.

If you’re interested in reading up on this particular passage regarding head covering, perhaps digging a bit deeper & forming your own opinion on what it means, I found a great resource that does a great job of explaining the verses & going through several possible options.  Please check it out here.

The idea of submission to a man isn’t a super popular one.  Especially right now in our current culture.  I get that.  This was not a Scripture I wanted to try to lay out here & comment on.  Believe me.  But I couldn’t just let it go & move on.  Submission isn’t an easy word…or verb to live out.  Whenever I begin to feel like I want to be in charge, I want to lead and direct this ship though, I need only look at Christ.  In the hours before they nailed him to a wooden cross & lifted him into the air to die he submitted to the will of the Father.  Submitted.  It wasn’t easy for him {“take this cup”}, and he understands that it’s not easy for us either.  But He is good.  His instructions are good.


But I want you to know that Christ is the head of every man, and the man is the head of a woman, and God is the head of Christ.

In any case, in the Lord woman is not independent of man, nor is man independent of woman. 12 For just as woman came from man, so man comes through woman. But all things come from God.

Four Apps You Need While Fighting Cancer

We’re just a few short days on the other side of treatment.  Counts are still dropping.  Scans are still pending.  But with treatment fresh on my brain, I wanted to sit for a minute to look back at all I’ve learned from a practical standpoint.  Apps on my smartphone were a must!  Technology used to make treatment more manageable.   If you ever find yourself on the cancer road, these are apps you’ll definitely want.

  1. Medication App called Round Health.  You can download it to your smart thing here.  At one point, sweet ginger was on several medications.  Not all were taken at the same time or in the same interval.  Plus, with two of us {me & dad} administering the various meds, it was hard to keep track of what he’d had, what he needed and when he took it last.  Round Health app was the easiest medication tracker that I tried.  I added all meds and their schedule.  When he took a dose we simply tapped the button recording the time & dose taken.  No matter who administered it, it was recorded for both of us to see.  Notifications could be set up to alert us when a dose was due.  This app proved itself over and over again and was very useful in talking with his doctors.
  2. Calorie Tracking App called My Plate.  You can download the Apple version here.  For the first few rounds of chemotherapy, sweet ginger’s weight was of major concern.  He had initially lost about 15 pounds in the weeks leading up to and immediately following diagnosis.  His doctors were concerned & after the debacled feeding tube incident, we were determined to make sure sweet ginger gained weight.  This app has oodles of barcode data, simply scan what’s eaten & it tracks the calories {and other nutrients} you’ve eaten.  Simple to use, easy to track.  Gladly, it helped sweet ginger gain all those 15 pounds back, plus!
  3. Caring Bridge.  You can find it here.  Family & friends want to keep up to date.  They want to know how things are going.  To celebrate the ups and help during the downs.  The very, very best way to keep everyone you know in the loop is with Caringbridge.  This site allows you to write quick journal updates that go to everyone you know who follows.  It completely {or nearly completely} eliminates your need to text, email and call everyone you know with information.  Everyone gets your updates at the same time.
  4. Bite Squad.  Hospital food can be alright.  But after several days, weeks, months…maybe not exactly what you’re craving.  Enter Bite Squad.  Another app you can find here.  Depending on where you live {or where your treatment is} this service is a must!  Food from hundreds of restaurants delivered right to where ever you are.  Feel like pasta? great!  Feel like Mexican? no problem.  Need your favorite burger?  it’ll be at your door in a flash.  Delivery charges range from $1-$10.  We used it every chemo round at least once, sometimes every night.  **if you’re looking for a gift card to get someone in treatment, this would be the BEST gift card I could imagine receiving**

BONUS… the non-app tip that will make life with treatment SO much better.

  1. Glad Press & Seal Wrap.  Who knew this would be such a valuable thing??  At every appointment, the port is accessed.  Sweet ginger has a power port that requires about a 2 inch needle to be inserted into the port on his chest at every appointment, for every treatment.  In order to minimize pain, we use Emla numbing cream.  But what a mess that can be?  to keep the Emla on the port & not on his shirt, we cover it with Press & Seal wrap.  It is the perfect cover.  Sticks to the skin just enough without absorbing the Emla.