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