Happy Cell Day, Avery!

What I'm feeling today can be summed up in one word: thankful. Not just a little thankful though, deeply grateful from the bottom of my heart to my wonderful God, to the amazing medical team at Cincinnati Children's Hospital, and to the donor who gave a little part of himself to my Avery on this very day one year ago.

Prior to transplant and for a couple of months following the transplant, Avery was transfused with platelets about every 7-9 days and with red cells about every 2 weeks. He would go from having a platelet count of around 200k post transfusion to a single digit count about a week later. He was covered in bruises and ptekai. He would get red cells when his hemoglobin dropped below 7, although at times it was much lower.

Not to bore you with all the details, but the weeks following the transplant were Avery's worst. The weeks of chemo finally caught up with him about the same time his body was invaded with new stem cells that were trying to replace his. His body put up a fight, and he was so pitiful as he rocked back and forth in pain despite his pain pump night after night. The vomiting and diahrrea were out of control, and even the tube feeds had to be stopped and replaced with TPN through his central line for a few months to give his gi tract time to heal. His kidneys and liver were hit very hard, and his immune system had to be repressed to allow the new cells to graft without being attacked. He developed rashes all over his body, mucousitis (sores inside the mouth and throughout the gi tract), graft vs. host disease in his mouth and throat, thrush, spinal/lumbar fractures, and a variety of other symptoms that go along with the treatments used during the process.

While Avery may seem fragile, and he is in some ways, let me tell you, he has fought through some dark, dark days and endured pain that would make most folks just give up. This day will always be the day we remember that Avery got his second chance on life and his brand new cells!  It also marks the time we've waited for when the worst is behind us and Avery's recovery period is nearly complete.

Happy cell day to the bravest little boy I know, Avery!

My boys and I on Avery's transplant day.  Bryson got special permission to come for the event.

Avery watching his Barney while he is receiving his new cells.  He thought the whole thing was a little boring. :-)

Avery's new bone marrow!

Pushing Pause

Doesn't it seem like we're just always in a rush? Maybe you're not guilty like I am, but it sure seems like I'm always wishing away a moment or not truly enjoying a particular time because I'm thinking about the next thing I need to do. Busy, busy, busy. And minutes turn to hours, hours turn to days, days turn to weeks, and before you know it, I'm looking back thinking, "Where did the time go?"

I think it's natural to believe that something better lies ahead for us, and in a way, that's good. But what about those wonderful opportunities to savor a moment that I'm letting slip through my fingers today? When I was a kid, I remember looking at teenagers thinking that I just couldn't wait to be one. And then it was dating and marriage that seemed so perfect. After all, adults get to do whatever they want, whenever they want, right?? Now here I am, thirty-one years old (even typing that makes me choke just a little!), and I'm looking for a brake to slow this train down, or at least a pause button!

Phillip and I were recently reminiscing about our early married days and discussing a remodel job that we did years ago. Then we kind of moved from one topic to the next, and I realized that we sounded a lot like my grandparents sound sometimes when they tell us about some of the events of their lifetime. It kind of dawned on me, again, that I will be them someday! It doesn't help much when Bryson says sweetly, "Mommy, I love you even though you're old!"

If there's any resolution I have made to myself lately, it is to just SLOW DOWN and make the most of today. No, it's not always a beautiful life. In fact, it's kind of noisy and chaotic, but it's mine and filled with so much love! I have to say that with the events over the last 12 months, I feel kind of like I just missed a year of life. But now I'm back to a somewhat "normal" existence, and everyday brings an opportunity to make a memory.

I don't have any beautiful pictures to share tonight, (after all, beautiful pictures, for my crew anyway, are usually not nearly as much fun as they look!) but I do have some of the snapshots I've taken recently just because I couldn't let the moment go by without capturing it! So here's to savoring a few moments of my wonderfully imperfect life!

My boys at the park on a beautiful fall day. Bryson wasn't thrilled about stopping his playing to pose, but I just love Avery's pose. Love these boys!

Bryson's kindergarten school picture. This little guy is the best big brother ever, and I'm so proud of him!

Daddy and Bryson were gone, so Avery and Emerson enjoyed a long bath together. He has finally fallen in love with her...it took awhile, but now he cracks up at almost everything she does.

Em using her big brother as a seat, and you can't tell, but Avery is smiling!  With Bryson at school all day, they're becoming great friends.

Flowers from my husband and kids on my first day back to part-time teaching.  Yes, I'm a lucky woman!

Avery living the good life! :-)

My grandpa has a habit of bringing my kids cotton candy once or twice a week.  He loves his great-grandbabies!  As his hat points out, he's a WWII vet, and his worn, bent hands are trying to keep up with feeding Miss Em that huge ball of sugar!  We're blessed to still have him!

In Mommy's shades!

Memory Lane

One year ago today, we checked into our temporary home, aka room 16 in the Bone Marrow Transplant Unit at Cincinnati Children's Hospital.  We entered with much hope and were as prepared as we could have been.  We had absolutely no idea how  physically, emotionally, spiritually, financially draining the entire experience was going to be, but our only goal was to save our little boy's life.

Today, my little Avery is safe and sound in his own bed, sleeping much later than he would have in the hospital.  They would have woken him by now with the changing of shifts and vitals, meds, and assessments.  Today, Avery's cbc is pretty close to normal, and his other counts are stabilizing, slowly but surely.  Miraculous.

Our 8 months in Cincinnati seemed to take a lot from us, including precious time with our other children and the ability to watch our last baby grow as babies do so quickly!  Avery quit eating, lost a lot of his muscle tone that he had worked so hard to gain, and for a while, lost his smile.

I would never say that this year flew by.  In reality, it was the longest year ever, and there were moments, days, and weeks, I feared it would never end and even questioned whether or not we did the right thing by putting Avery through such an ordeal.  But God has kept his promise and brought us through the biggest storm of our life thus far.

I'm so thankful this year is behind us and Avery is on the road to recovery, at least in his hematology issues.

So what's on our agenda for today?  Well, we're almost all packed up, and whenever Phillip gets home, we're loading  up the minivan and heading to Indiana.  Phillip is preaching my dad's homecoming service Sunday, and I get to spend the entire weekend enjoying being with my precious family!

Psalm 30:5 - ...weeping may endure for a night, but joy cometh in the morning.

Bethany

A Fresh Start

Autumn is officially here, and I'm so looking forward to the next few months.  I don't think I have a "favorite" season; I look forward to each one for different reasons, but more so this year than ever!  This time last year we were getting our business in order for Avery's long hospital stay and bone marrow transplant.  We tried to prepare ourselves, but there is simply no way to fully do so.  When the days were long and painful, we were told by our nurses, doctors, social worker, and fellow BMT families to focus on the future...to envision this time next year.  Well, I took that advice to heart, and I think that's the only thing that kept me sane some days.  My plan for the next year, or two, or fifty...is to make the most of every moment and enjoy the time I have with my family! 

You'll probably get sick of hearing my "this time last year" stories, but I just can't describe just how difficult, stressful, scary, lonely, and exhausting the last year has been.  Well, it has been pretty stressful for several years as Avery's health declined and we became busier trying to keep up with his symptoms and our worry grew as to what was going to happen.  But the past is the past.  Today is a blessing, and as the leaves are starting to change and the air is getting that distinct crisp, fall feel, it seems like a fresh start in more ways than one.

Yesterday, Avery went into clinic for a check-up and labs.  I never cease to be amazed by "normal" blood counts.  Sure, his white cells are still coming in, his platelets aren't quite in the normal range, and is liver panel is elevated, but with time, those should regulate.  His hemoglobin is 15!!  Wow!  That's actually a little high. :-)  His ANC was over 6000.  Numbers like that make me want to tell anybody who will listen.

Today I had a chance to thoroughly clean my house, which should last about 10 minutes if I'm lucky.  I put a fall scent in my candle warmer and just enjoyed this cool, rainy, fall day.  I know that sounds completely ordinary and unexciting to some of you folks, but it means so much to me!  Since we've been home, my husband can vouch for the fact that I've been cooking and baking like I never have before.  Some of that is due to us not being able to be out and about, but it's mostly because after 8 months of fast food, hospital cafeteria food, and volunteer-cooked meals at the Ronald McDonald House, I now appreciate more than ever the chance to cook and share a meal with my family. 

This fall, I have so much to be thankful for.  My heart is filled with gratitude for God's grace to me and my family. 

Enjoy your Fall!
Bethany

Bryson's First Award

Being a parent is certainly not for the weak-spirited, and if you've read my blog before, then you've probably read about some of my frustrations and worries about being a mommy. I'll just be honest, there have been moments over the last six years where I've seriously questioned my parenting skills. Some days I've felt like I discipline more than I do anything else! I've told my sister and husband before that if I just knew that at some point my child would grow into a well-behaved person, I wouldn't stress nearly so much, but since there is no crystal ball, and my little darlings have occasionally given me reason to wonder if that will ever happen, I just have to keep plugging along and hope and pray I'm doing something right!

And then there are moments when my child shows maturity and self-control I didn't know he had or shares when I expected him to be stingy or is polite when I thought he might be rude...and that tiny moment somehow validates all that hard work and effort I expend every waking moment of the day to mold my little children into God-fearing, productive, and well-mannered human beings.

Since I often blog about the frustrations of being a parent, I thought I'd share one of those vaidating moments today!

Bryson has been in Kindergarten for a little over a month now, and has exceeded my expectations. I was worried that the long days would be too much for him since he was never in all day preschool before and that the large class size would give him an audience for his silliness and cause for distraction. So far, he is doing just awesome, and this Mama couldn't be any prouder!

As he got off the bus Friday, he had a little extra bounce in his step and excitement in his eyes. As he darted in the house, he said incredulously, "Mommy, I got a REWARD today!" I smiled and reached for it, figuring he got a sticker or pencil or something like that. No, he actually received certificate in a folder that names him "Walter Shade Early Childhood Center Asset Builder of the Month." And then the certificate goes on to describe the kinds of "assets" he is building!

"Has intentionally, deliberately, and repetitiously built assets and relationships by demonstrating kindness and caring. He often asks about the well-being of classmates who are upset. Bryson follows directions the first time given. He is eager to learn new things and show his enthusiasm by listening intently and volunteering to answer questions. He often asks his teachers to assess his work as he strives to do his best with every activity." Signed by the Superintendent and Principal.

I told him I wanted to take a picture of him with his award, and he spontaneously struck this pose.  I love this kid!

I'm sure I'll find myself coming back to this post and reading it in the future when my little "asset builder" isn't...ahem...quite exhibiting all of those admirable characteristics. But for now, I'm just thrilled for my little man's success! I know if we can just channel all of that energy he possesses in a positive direction that he is capable of great things.


~Bethany

~My Babies~

 Some days they make me want to pull my hair out.

 

Some days they make me cry in frustration!






 

Somtimes I feel like I'm doing the whole mommy-thing all wrong.

But most of the time, they make me laugh at the silly things they say and do.  

 They make me proud of who they are and who they are becoming. 

They challenge me to be a better person,

           a better mommy,

              a better role model,

  and a better Christian.

I am blessed to be their mommy!

Bryson Douglas, 6 years old, Avery Weston, 4 years old, and Emerson Rose, 1 year old.

Treasures

Events over the last week or two have caused me to ponder a bit on how short life is and what really matters.  It was this time two years ago that my mother-in-law was told there was nothing else doctors could do for her, and we spent the longest two weeks of our lives sitting at Hospice, watching her slowly fade.  About a week ago, Phllip, his sister, and I were going through some things up in his parents' attic.  My father-in-law has remarried, moved to Tennessee, and is planning to rent his house that he shared with Carolyn, so he asked Phillip and Jenny to go through some things before he finishes cleaning out the house.  As we sat up in that cramped attic sorting through the boxes of random things, I couldn't help but to think of the irony of the situation.  Carolyn is now rejoicing in Heaven, walking on streets of gold, and there we were, sorting through her earthly "treasures."  The stash of items seemed pretty random: some were of sentimental value, some were things I'm sure she thought she'd get around to using someday, and other things were just clutter, but for whatever reason, Carolyn felt the need to hang onto them.  I started thinking about all of my "stuff" that seems important to me and how hard Phillip and I work to save and plan for our future.  In the end though, none of those earthly items are going to benefit us one bit, and they might actually leave our kids shaking their heads saying, "Why did they save this?" 

My grandma Lucille is getting ready to pass away, and I've spent a lot of time the last week and a half sitting at her house, reminiscing with family, holding her hand, singing her songs, and watching her weaken to the point that she is no longer responsive, and it is just a matter of time until she draws her last breath.  When you see someone at the end of her life, you can't help but think about what really matters, and it isn't wealth, popularity, beauty, or the materialistic things that we all work so hard to accumulate. 

I KNOW this is true, but why is it so hard for me to remember?  There are days when what I'm going through or what I'm working on seems like the most important thing ever!   But when I'm lying on my death bed, the only thing that is going to count is whether or not my name is written in Heaven and what I have done for Christ.  Lord, help me to desire to lay up heavenly treasures more than earthly ones!

Matthew 6: 19-21
 Lay not up for yourselves treasures upon earth, where moth and rust doth corrupt, and where thieves break through and steal: But lay up for yourselves treasures in heaven, where neither moth nor rust doth corrupt, and where thieves do not break through nor steal: For where your treasure is, there will your heart be also.

 Only one life, twill soon be past, but only what's done for Christ will last. - unknown

 "He is no fool who gives what he cannot keep to gain that which he cannot lose." Jim Elliot, missionary to the Auca Indians, martyr for Christ.

 ~Bethany