I am a mom of a cutie pie (very biased). And I wanted to share my experiences with others (including my cuties grandparents, great-grandparents, numerous uncles and other relatives). I love being a mom and can't imagine doing anything else.Results
Today went smoothly. A lot of waiting around but that has become normal for us. The lab was really slow and the doc was in a procedure. But otherwise all went well. Livi did great as always. She is the most amazing kid I know. I am reminded of this each time we go to clinic and she doesnt' even cry.
Her counts were good...ish. The WBC's were elevated to 54 but they assume that is from the surgery and they should calm back down. The RBC's were 10.2 (HCT for the nurses) and the platelets...wait for it...drum roll please were 277!!! That is normal and a number we have never ever seen before. Good riddance to the spleen. It was keeping her platelets down.
I feel like I got my questions answered. Our doc feels that transplant is the only way to cure Alivia. Extended time of steriod therapy will have many negative affects...lack of growth, weakened bones and possible osteoprosis. She still has no signs of ALL and so ALL treatment won't work. The doc reiterated that the transplant could take her life but she feels there is no other way to give her a normal life. So I guess we go ahead. We will be using a cord blood match because all adult unrelated donors haven't been perfect matches (all 9 out of 10...not good enough) and the cord they have is perfect. (side note if you are pregnant and wondering if you should save your cord blood or not you could always donate it to the national bone marrow registry. It's free and could save a life. go to marrow.org for more info) The transplant wont' be in two weeks like we originally thought. It will be in a month. Lots of hurry up and wait. Not that I mind the extra time at home just sort of want to get the transplant over with. That means Alivia will turn 2 in the hospital.
Thanks to Marmie for the frequent cards. Livi loves opening them. Thanks to Hannah K (and her parents) for the card and stickers.
posted by Alivia's Momma @ 3:23 PM
11 Comments:
I have been continuing to read along even though I haven't written for a while....Just want to say that I am glad to hear that the counts were good and that you seem confident that the transplant is the best decision. A hard decision can also be the best decision. Your doctor seems to have considered all the possibilities thoughtfully also....I am continuing to pray for all of you. Praying for peace and continued blessings -
Cathy S.
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I know it's probably too late for Alivia, but I would like to know how I can become a bone marrow donor. Is there a web site that would tell me where to go in my area? (I live in Gaithersburg MD). I'm sure you gave this info in your blog, but I don't know where to find it. If you want, you could just let me know what date to pull up and I can read it there.
I read your blog almost daily, and pray for Alivia.
Eli Price
Emily,
You have such strength. I hope you see that in yourself. The decisions are so hard, but you are making them so well. You are Alivia's fighting chance...you educate yourself to make the best decisions you can as a Mom and then follow through with the most tender loving care. You'll get her through this. I think of you often.
So grateful to hear all is going well. Continuing to pray for you all and inspired by the strength of your faith. Love to Livi. Keep up the great work. You are such a great mom!! Betsie
You all remain in my daily prayers-~She is absolutely PRECIOUS~ !
P Miller
Dear Emily, James & Alivia,
I read this the other day & I thought it would really encourage you! Sorry it's so long though! I was really blessed by it! I always thank God for the Roses in my life, but forget to thank God for the thorns in my life!!
Sandra felt as low as the heels of her Birkenstocks when she pulled
open the florist shop door, against a November gust of wind. Her life had
been as sweet as a spring breeze and then in the fourth month of her
second pregnancy, a "minor" automobile accident stole her joy.
This was Thanksgiving week and the time she should have delivered their
infant son. She grieved over their loss.
Troubles had multiplied. Her husband's company "threatened" to transfer
his job to a new location. Her sister had called to say that she could
not come for her long awaited holiday visit.
Then Sandra's friend suggested that Sandra's grief was a God-given path
to maturity that would allow her to empathize with others who suffer.
"She has no idea what I'm feeling," thought Sandra with a shudder.
"Thanksgiving? Thankful for what?" she wondered. "For a careless driver
whose truck was hardly scratched when he rear-ended her? For an airbag
that saved her life, but took her child's?"
"Good afternoon, can I help you?" Sandra was startled by the approach
of the shop clerk.
"I.... I need an arrangement," stammered Sandra.
"For Thanksgiving? Do you want the beautiful but ordinary, or would you
like to challenge the day with a customer favorite I call the
'Thanksgiving Special'? I'm convinced that flowers tell stories," she
continued. "Are you looking for something that conveys 'gratitude' this
Thanksgiving?"
"Not exactly!" Sandra blurted out. "In the last five months, everything
that could go wrong has gone wrong."
Sandra regretted her outburst, and was surprised when the clerk said,
"I have the perfect arrangement for you."
Then the bell on the door rang, and the clerk greeted the new customer,
"Hi, Barbara...let me get your order."
She excused herself and walked back to a small workroom, then quickly
reappeared, carrying an arrangement of greenery, bows, and what appeared
to be long-stemmed thorny roses. Except the ends of the rose stems were
neatly snipped: there were no flowers.
"Do you want these in a box?" asked the clerk.
Sandra watched for the customer's response. Was this a joke? Who would
want rose stems with no flowers?
She waited for laughter, but neither woman laughed.
"Yes, please," Barbara replied with an appreciative smile. "You'd think
after three years of getting the special, I wouldn't be so moved by its
significance, but I can feel it right here, all over again." She said, as
she gently tapped her chest.
Sandra stammered, "Ahh, that lady just left with, uh.... she left with
no flowers!"
"That's right, said the clerk. "I cut off the flowers. That's the
"Special". I call it the Thanksgiving Thorns Bouquet."
"Oh, come on! You can't tell me someone is willing to pay for that!"
exclaimed Sandra.
"Barbara came into the shop three years ago, feeling much as you do
today," explained the clerk. "She thought she had very little to be
thankful for. She had just lost her father to cancer; the family business
was failing; her son had gotten into drugs; and she was facing major
surgery."
"That same year I had lost my husband," continued the clerk. "For the
first time in my life, I had to spend the holidays alone. I had no
children, no husband, no family nearby, and too much debt to allow any
travel."
"So what did you do?" asked Sandra.
"I learned to be thankful for thorns," answered the clerk quietly.
"I've always thanked God for the good things in my life and I NEVER
questioned Him why those GOOD things happened to me, but when the bad
stuff hit, I cried out, "WHY? WHY Me?!" It took time for me to learn that
the dark times are important to our faith! I have always enjoyed the
'flowers' of my life but it took the thorns to show me the beauty of
God's comfort!
You know, the Bible says that God comforts us when we're afflicted, and
from His consolation we learn to comfort others."
Sandra sucked in her breath, as she thought about the thought that her
friend had tried to tell her.
"I guess the truth is, I don't want comfort. I've lost a baby and I'm
angry with God."
Just then someone else walked in the shop.
"Hey, Phil!" the clerk greeted the balding, rotund man.
"My wife sent me in to get our usual Thanksgiving arrangement...twelve
thorny, long-stemmed stems!" laughed Phil as the clerk handed him a
tissue wrapped arrangement from the refrigerator.
"Those are for your wife?" asked Sandra incredulously. "Do you mind
telling me why she wants a bouquet that looks like that?"
"No... I'm glad you asked," Phil replied. "Four years ago, my wife and
I nearly divorced. After forty years, we were in a real mess, but with
the Lord's grace and guidance, we trudged through problem after problem.
The Lord rescued our marriage. Jenny, here (the clerk) told me she kept
a vase of rose stems to remind her of what she had learned from "thorny"
times. That was good enough for me. I took home some of those stems.
My wife and I decided to label each one for a specific "problem" and
give thanks for what that problem taught us.
As Phil paid the clerk, he said to Sandra, "I highly recommend the
Special!"
"I don't know if I can be thankful for the thorns in my life." Sandra
said to the clerk. "It's all too...fresh."
"Well," the clerk replied carefully, "my experience has shown me that
the thorns make the roses more precious. We treasure God's providential
care more during trouble than at any other time. Remember, it was a crown
of thorns that Jesus wore so we might know His love. Don't resent the
thorns."
Tears rolled down Sandra's cheeks. For the first time since the
accident, she loosened her grip on her resentment.
"I'll take those twelve long-stemmed thorns, please," she managed to
choke out.
"I hoped you would," said the clerk gently. "I'll have them ready in a
minute."
"Thank you. What do I owe you?"
"Nothing. Nothing but a promise to allow God to heal your heart. The
first year's arrangement is always on me." The clerk smiled and handed a
card to Sandra.
"I'll attach this card to your arrangement, but maybe you would like to
read it first."
It read:
My God, I have never thanked You for my thorns. I have thanked You a
thousand times for my roses, but never once for my thorns. Teach me the
glory of the cross I bear; teach me the value of my thorns. Show me that
I have climbed closer to You along the path of pain. Show me that,
through my tears, the colors of Your rainbow look much more brilliant."
Praise Him for the roses, thank Him for the thorns.
___________________________________
I hope this encouraged you all. We are still praying. Love,
Hannah Byers & Family
God is good...
I will keep praying continuously for alivia and all of you... God will keep her in His hands...
psalm 55:22
love beth
Emily, I am constantly amazed by your reliance on God & your ability to see the silver lining in all of this. I am so happy to hear about how great Alivia is doing & how quickly she has bounced back after surgery. Many are praying for you, James, and Livi. ~Beth
Good to hear that Livi's levels were good and that she is eating and sleeping better!
Viv
Yeah, who needs the spleen?!! Dumb old thing!
Yay, Livi, good counts on those platelettes!!!
I'm glad for the time you guys will have at home. These seem like good times, even though the inevitable transplant is coming. Who knows what God intends to do in those extra weeks...for Livi, for you and James, for His glory.
We keep praying!
Julie
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