Small Blessings

One thing this year has taught me is too really take time to enjoy the small blessings.  Here are a couple of blessings that I'm so glad to have experienced today...

Lainey and I spent some girl time together today.

She picked out my nail color and I had them paint a flower on my toe, so I'd match her.

She has bright pink toes and fingers!

The local nail salon will paint her fingers and toes, with lots of fancy flowers, for $7.  

Plus I get to spend time with my sweet girl and she feels like a little princess.

Well spent $7 I think.

We limit screen time in our house compared to most families.

I'm probably more neurotic about this than I would be because Erik (and Victor)

both become zombies when the TV is on.  They just can't focus on anything else.

I truly think Erik would watch TV for 7-8 hours in a row if I let him. Ha!

(Lainey, Carson, and I most definitely are not like that.)

We've had some extra down time this week though so I rented 

Star Wars and Victor and Erik watched that together tonight.

I find watching Star Wars quite painful but as you

can see from the photo above the boys enjoyed it! 

And tonight I'll leave you with a more hopeful song (thank you Jill B.)

I've heard about this baby boy
Who's come to earth to bring us joy
And I just want to sing this song to you
It goes like this, the fourth, the fifth
The minor fall, the major lift
With every breath I'm singing Hallelujah
Hallelujah

A couple came to Bethlehem
Expecting child, they searched the inn
To find a place for You were coming soon
There was no room for them to stay
So in a manger filled with hay
God's only Son was born, oh Hallelujah
Hallelujah

The shepherds left their flocks by night
To see this baby wrapped in light
A host of angels led them all to You
It was just as the angels said
You'll find Him in a manger bed
Immanuel and Savior, Hallelujah
Hallelujah

A star shown bright up in the east
To Bethlehem, the wisemen three
Came many miles and journeyed long for You
And to the place at which You were
Their frankincense and gold and myrrh
They gave to You and cried out Hallelujah
Hallelujah

I know You came to rescue me
This baby boy would grow to be
A man and one day die for me and you
My sins would drive the nails in You
That rugged cross was my cross, too
Still every breath You drew was Hallelujah
Hallelujah 

Hold My Heart By Tenth Avenue North

I heard this song on the radio today.  The lyrics describe my thoughts and feelings recently, quite perfectly.  They're not pleasant, but neither is our current situation.  Don't worry I'm okay just wish with every fiber of my being that Daron was healthy.  Still hoping to see my brother healthy, vibrant, and full of life again someday.  How long must we pray?!

P.S. Happier posts to come in the near future! :)

Lyrics:

How long must I pray, must I pray to You? 
How long must I wait, must I wait for You? 
How long 'til I see Your face, see You shining through? 
I'm on my knees, begging You to notice me.
I'm on my knees, Father will you turn to me? 

One tear in the driving rain, 
One voice in a sea of pain
Could the maker of the stars
Hear the sound of my breakin' heart? 
One light, that's all I am
Right now I can barely stand
If You're everything You say You are
Won't You come close and hold my heart

I've been so afraid, afraid to close my eyes
So much can slip away before I say goodbye.
But if there's no other way, I'm done asking why.
Cuz I'm on my knees, begging You to turn to me
I'm on my knees, Father will you run to me? 

One tear in the driving rain, 
One voice in a sea of pain
Could the maker of the stars
Hear the sound of my breakin' heart? 
One light, that's all I am
Right now I can barely stand
If You're everything You say You are
Won't You come close and hold my heart.

So many questions without answers, Your promises remain
I can't sleep but I'll take my chances to hear You call my name
To hear You call my name

One tear in the driving rain, 
One voice in a sea of pain
Could the maker of the stars
Hear the sound of my breakin' heart? 
One light, that's all I am
Right now I can barely stand
If You're everything You say You are
Won't You come close and hold my heart.

Hold my heart, could you hold my heart? 
Hold my heart.

Trip To California: Part 3 (Family and Friends!)

After finding out that Daron had relapsed our family quickly decided that we needed to spend some quality time together so we made last minute arrangements to all be together (sans kids) for Christmas.

I headed to California on Wednesday so they could do the collection. Victor joined me Friday which was great because he was there for the stem cell collection and port placement.  Mom, Dad, Kevin, and Colin all came Saturday.

Marshmallow blasters!

So, we had about 48 hours with all 8 adults together.  It was great to be together.  We mainly hung out at Daron and Feifei's apartment (thanks for hosting!), ate lots of excellent food,  walked, played cards and Wii.  My favorite meal was the one I ate my first night out there - thank you for cooking Feifei!

Oh Colin, how I love your sense of humor!

Feifei, Victor, Kevin, Colin, and I went bowling one night too which was fun even if I came in 5th (only by a couple of points)!

Siblings by age

While Victor and I were gone my amazing neighbors and friends stepped in and watched the kids.  My aunt Barbara and cousin Aliza were going to come from Kansas to watch them the first 3 nights but a massive blizzard and the stomach flu prevented them from coming at the very last minute.

So my neighbors' au pair along with a host of friends provided wonderful child care for my 3 kids while we were gone (Thursday evening - Tuesday morning).  I really can not ever thank them enough. '

Aom watched the kids while we were gone.

She is our neighbor's au pair.  She's wonderful!

She took the kids up to DC to the museums, over to Christi's (her house) 

and made gingerbread houses and cookies,  over to Casey's (another neighbor) for a special lunch too.

They had Christmas eve dinner at Christi's as well.

My friends and neighbors Catie, Mirelle, and Lauren helped out as well.

We are so blessed!

Thank you thank you everyone!

I hope you have all had a wonderful Christmas!

Trip to California: Part 2 (Stem Cell Collection)

As I mentioned in the previous post I donated more stem cells while I was out in California.  This was a bit of an adventure this time! Ha!

Last time I donated cells I took Neupogen for 5 days prior to the donation.  Neupogen stimulates your bone marrow to produce extra cells.  It's primarily used in cancer patients but is needed for the people donating stem cells prior to bone marrow transplants as they need to be able to collect more immature stem cells from the donors than they would normally have floating around in their bloodstream.

Anyway, this time the infusion Daron will likely receive  is a little different.  Instead of infusing immature stem cells that have to take over Daron's bone marrow, they need to infuse mature lymphocytes (fighter cells) that can target Daron's leukemia and kill it!

The neupogen does not increase the number of mature lymphocytes (just immature cells) therefore it wasn't needed for this collection.  I was happy about that as artificially stimulating my bone marrow makes me a little nervous.

Given the fact that I didn't have to take neupogen prior to this donation (it causes bone pain), everyone anticipated this collection would be easier.

That wasn't quite the case!  In order to collect stem cells peripherally (via blood rather than directly from the bone marrow) they insert a large bore steel needle (rod) into one arm and an IV in the other arm.  The site with the large steel needle in it collects my blood using "vacuum- like" suction.  The rod hurts a little, but the suction does not.

Unfortanately, my blood vessel was very unhappy with this "suction" action and decided to spasm, a lot!  I could actually see and feel my blood vessels spasming (didn't hurt but was quite fascinating to watch).  They gave me Ativan which is supposed to help your blood vessels relax but it didn't help.  (It did help me relax and I took an excellent nap!)  They also tried positioning the needle differently, different vessels, etc.  Nothing worked.   They did attempt to collect cells for 3 hours and were only able to get 1.9 units of lymphocytes and they wanted 15.

So, that meant I needed to get a catheter placed in my neck as it much easier to collect the cells that way. (To collect the stem cells/lymphocytes they cycled all of my blood through this large machine 4 times, pulling off lymphocytes each time.  The machine can separate out specific cells based on weight.  Pretty amazing!)

How does one place a "neck catheter"?  I've seen this done but now have first hand experience.

At 6 PM on Friday night (11 hours after getting to the hospital that day) I was sent to interventional radiology.  By now the Ativan had completely worn off and I was quite nervous about the catheter placement.

It's hard to believe but they place these neck catheters while the patient is completely awake with no drugs at all except local anesthesia (lidocaine).  The lidocaine really helps with the pain but not the anxiety of having a large catheter stuck in your neck. Ha!

They had me lay down on a skinny metal table and then covered my from head to toe with a surgical drape.  They leave you a small hole to look out of on your left side but they that's it.

After sterilizing my neck the radiologist numbed my neck with lidocaine.  Then using a scalpel made a small incision (1/2 inch) in my lower neck exposing my jugular vein.  Using floroscopy to guide him he then inserted a fairly large catheter into my vein, put in a couple a stitches and sent me home.

The next day I went back to the hospital for the stem cell collection which went well.   Shortly after the collection they removed the catheter and after about 60-90 minutes of laying flat with pressure on the site they let me go home.  It is still mildly sore and I have a lump where they put in the catheter but that's it.

The thought of the catheter being in your neck is really worse than the actual procedure.  That being said, it is something I hope not to experience again in my life! Of course, it is super tiny sacrifice to make and I hope this story doesn't stop you from being a bone marrow donor!  Please sign up!  Your donation truly could save a life.

 Catheter in place

 Pre-collection blood draws

Stem cell collection in action

The catheter!

The long skinny tube was in my vein, the two short ones were 

what they used to access and return my blood during the collection.

Post collection I feel completely fine, aside from being a little more tired than normal.

Trip to California:part 1 (Daron Update)

If you have checked Daron's caring bridge page lately you will have read the unfortunate news that his leukemia has relapsed.   When his August bone marrow biopsy showed residual disease (instead of being completely clear of cancer) we knew that placed him at an elevated risk for a relapse.   Despite knowing that we all still hoped he'd be in the category that didn't end up relapsing or at least have a number of healthy years before having to fight fight fight yet another battle.  But, that didn't happen so now Daron is having to continue to fight this battle that started almost 14 months ago.  It's so scary and very exhausting but he is so brave and never even complains.  His quiet resilience never ceases to amaze me.

The conventional therapy for relapsed ALL is to do monthly chemotherapy plus additional infusions of my stem cells.  The chemotherapy is supposed to knock the cancer cells down enough that my cells will have a chance to attack and kill off the remaining cancer cells.  He will NOT receive my cells yet because he has to be off of immunosuppressants first to make sure he doesn't have a flare of graft vs host (which is currently less likely since he is still on immunosuppressants).  A graft vs host flare most likely occurs in the first 4 weeks after stopping immunosuppressants.  If he doesn't flare and still has evidence of leukemia on his bone marrow biopsy (and is still stable) that is when he would receive my stem cells.  They can give him more than one infusion of my stem cells and collected enough of my cells this time for 3-4 infusions.  A graft vs host flare can be very dangerous (although they need some graft vs host to occur in order to get rid of the leukemia) so that's why it's important to wait and see if he flares once he is off of the immunosuppressants instead of giving him the cells right away.

Honestly, the success rate of conventional therapy for curing relapsed ALL is not great.  Thankfully, there are new trials available for patients in Daron's situations that seem to offer quite a bit of hope.  So while he is currently receiving conventional therapy they are also looking into studies in case the conventional route fails.

Daron is currently doing okay.  He is in a lot of pain most of the time - mainly his feet and legs. He's also been extremely tired (sleeping many many hours every day) and experiencing some neurologic symptoms like short term memory issues.  We aren't sure why he's been having the neurologic symptoms but are hoping it's related to a drug he's been taking for the leg pain.  He's been tapering off of this for a week, so hopefully he will be more awake and able to function better soon.  Please please be praying for complete healing for Daron.  Please Lord grant us a miracle!

Merry Christmas!

We are home!  Never have I been happier to have my sweet babies climb into bed with me.  They knew it was Christmas morning but didn't even ask to go downstairs to open presents.  They were all just happy to lay in bed and cuddle.  (This was great since we didn't get home until close to 3 AM and they were up by 7 AM.)    Today is pretty low key - we opened presents, ate breakfast, took a nap (me), made a birthday cake for Jesus, and played with all the new toys.

I'll leave you with a photo from my trip to California as I haven't gotten out my camera today.  I hope you have all had a wonderful Christmas.

Quote of the Day: " Mom, When is Jesus coming for his birthday party?!"

Notable Quotes - Andrew Pray (for my kids)

" My hope is that you would fully grasp that
you are a loved child of God, you have what it takes, and
God has empowered you today through Christ to the specific
work he has given you. Rest in that and live in the freedom of knowing
that if God is for you, who could ever be against you.  I love you and I am proud of you!"
         
-Andrew Pray, youth pastor, father of 3 who recently was hit by a bus and killed while out riding his bike

I am so tired and weary tonight, with a long list of things still to do.  I sat down for a 15 minute break and stumbled upon this quote.  I find it to be so incredibly encouraging and am tempted to get it printed and placed over each of my kids beds.  How I hope they go to bed each night knowing how deeply they are loved.

But it's not only my kids that need to know how loved they are, but my spouse, friends and family too.  Do my words and actions portray that regularly?  If I was hit by a bus tomorrow what words  would people be able to remember me by?  It is my prayer that I be a joy to those around me.

Below is a video made by the friends of Andrew Pray.  It consists of his last words on facebook and twitter.  He is gone too soon but hopefully his words will encourage others to live their life well.

Last Words

Carson - 21 Months

My dear sweet Carson! 

If you are ever in need of a smile, just spend an hour with Carson!

He is such a sweet, sassy, spunky source of joy.

He definitely has a LARGE twinkle in both eyes that might get him in a bit of trouble 

someday but for now it mainly makes us smile.

What's he up to at 21 months?!

Speech:

The little guy has always been a little behind in speech.  I have to say that I think he has made another big leap in speech during the past 7-10 days.  He is attempting a lot of words now and often I can understand them.   I've heard him put two words together 3 times which is pretty fun!  He has said the following two world phrases....

" Uh oh, Way Way (Lainey)!"  when he heard her crying

"Mama Up!" Haha!

"Help peaze!" when he wanted me to help him with his blocks.

So, even though he lags behind where Lainey and Erik were at this point (and many of his peers) I really think he is doing just fine and is somewhere along the normal spectrum.  I'm so glad he is starting to be able to tell us a little more as I know he has a lot to say!

Health:

Carson's health was a little rocky over Thanksgiving when he had a crummy respiratory virus that resulted in a trip to the ER and admission orders (which were thankfully canceled before we went up to his room).  He had lower than normal O2 levels (88-93% depending on sleep/awake).  After a HUGE dose of albuterol (5 mg  vs the normal neb of 0.75 mg) and oral steroids his O2 stats improved.  He was sent home with Prednisone (15mg) which cleared up his lungs but was AWFUL!!  My poor poor baby was a screaming hysterical sleepless mess for 5-6 days.  I stopped the steroids a day early because doing better and not tolerating them well.  If we are ever in that situation again I will likely try to stop them after 48 hours.  Hopefully he won't need them again.

Development:

Carson has decided he is a big boy!  One day this week he refused to sit in his booster seat that hangs off of the counter.  "No!" "All done!!"  So I put him down and he immediately ran over to a "big chair" pushed it into his spot, climbed up, and proudly declared "Mine!"  Haha!   We put the baby chair away. 

He was very excited to find a bag of chocolate chips within his grasp

We did move backwards with the crib this month.  We had put Carson in a toddler bed and he did really well with it.  He did get out of bed about 1x a night but it was usually early and we just stuck him back in his bed and wouldn't see him until morning.  Well, then came the bronchiolitis and steroid induced sleeplessness!  So after about 5 days of no one sleeping Victor and I put the crib back together at midnight and he's been happily in there since then! 

What have we been up to this month?

Victor and I left town for a couple of nights and left the kids with a sitter (Aom - our neighbors au pair).  They did great and had a lot of fun with her.

We cut down a Christmas tree which Carson has showed little to no interest in. (I thought he would be pulling ornaments off of the tree constantly!)

We went to a Christmas "walk" and boat parade.  

Carson had some "friends" over for a get together which usually doesn't happen unless kids his age come over with Erik and Lainey's friends.

I've been working for 2 months now - just on Wednesdays.  Carson has done really well with this and doesn't cry when the sitter here which is great. 

We love our sweet little boy from head to toe!!

Joy

That was the topic of today's sermon at church.  Kind of ironic given that so many people in our nation are heartbroken for the families in Newtown, CT, myself included.  Our pastor had that sermon planned some time in advance and said while he considered changing the topic last minute he felt like it was appropriate.

He talked about the trials of Elizabeth and Zachariah.  The spent most of their married life longing for a child, giving up hope completely, when God sent an angel to them proclaiming that Elizabeth would indeed have a son named John (the Baptist).

Elizabeth and Zacharias story is here

The point of his message was, "Don't give up hope even when things seem impossible."

I really was in need of hearing a message like this as our world is so broken.  It's filled with sickness, sadness, and conflict.  But there is always hope, God can bring blessings even out of the most awful situations.  Even in bleak situations I do think it is possible to find joy.

Pastor John closed the service by giving everyone a candle (even the kids!) and praying together as a church for the community of Newtown, CT.

As side points...

I found this blog post on mental illness to be really fascinating and sad.  It's a worthwhile read.  Go HERE.

Also, go HERE to read Daron's latest caring bridge update.  I'm headed out there on Wednesday, Victor will follow on Friday.  Daron and Feifei are hosting all of my siblings and our parents at the same time which will be fun, hopefully not too stressful for them (1/2 of us are staying in a hotel but there will still be a lot of people in their apartment next week). Please be praying for him and our family this season.

Wheat Belly!

Dr. Davis was on Dr. Oz recently.  I think his book is an excellent read but the videos will give you a quick glance into his theory.  I urge you to try eliminating wheat for a month and see how you feel, especially those of you reading this that might be diabetic or struggling with your weight.  I'm not super concerned with the weight loss portion but I think I feel better off of wheat (less bloating/pain). Ultimately wheat is the foundation of most processed foods and eating less processed food and more real food is obviously better for you!

 Let me know what you think?
Have you given it a try yet?
What were your results?
If not, what's holding you back?


http://www.doctoroz.com/videos/are-you-addicted-wheat-pt-1

http://www.doctoroz.com/videos/are-you-addicted-wheat-pt-2

http://www.doctoroz.com/videos/are-you-addicted-wheat-pt-3


P.S.  I do apologize to my dear friend and cousin who happens to be a wheat farmer!

Little Ms. Determined

Look at what my not-quite-3.5 year old figured out today?!

My sweet girl sure makes me smile!

We are so proud of you Lainey!

Oh Carson!

Barking along with the puppies!

Too funny!

Shenandoah National Park

Victor and I snuck away for a quick trip this weekend.  We left the kids at home with our neighbors au pair.  They had a fun time with her!

Our 7th anniversary was a couple of weeks ago.  Instead of gifts I planned a surprise trip using our credit card points to cover it as I felt guilty spending money on it otherwise.

We stayed in a small "guest house" in a small town called Flint Hill Virginia.  It was basically like a bed and breakfast without the breakfast and with a king size bed.  Yay!

Saturday we slept in, got up and ate breakfast at an excellent restaurant, and then spent most of the day hiking up Old Rag.  It was so much fun!  We hiked about 10 miles and for 2-3 miles you had to scramble up rock faces, jump over ravines, pull yourself up through narrow crevices, etc.  It was a really fun adventure (I only cursed my friend who recommended it once or twice).

Shenandoah National Park is only an hour out of DC.  I'm so disappointed we didn't take advantage of it when we lived closer!  It's a beautiful place.  We will be back!  I may only hike in the late fall/winter though because copperheads are quite abundant in this area and I am quite terrified of stumbling upon one.  Ha!

After our hike we did a little window shopping, visited an antique store owned by my friends father, took a personal tour of a Whiskey distillery, and finished the night was a wonderful dinner!  I ate Korean BBQ with kimchi rice and sautéed greens.  It was wonderful!!  The restaurant we ate at had a really wonderful band playing that night.  We stayed for two hours and even danced a couple of times.  It was a fun night!

The next morning we did a little more shopping/strolling through the little mountain towns, ate breakfast at a neat restaurant that serves only local foods, and then headed home.

It was a nice break from our busy lives.