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.No catchy title
Today was yet another day that I would like to never live again...too bad I'll get to next Monday and Thursday. We got to the hospital at 10. Got a blood draw and went right to get an X-ray. Alivia hates X-rays...maybe the most of all. She hates being stretched and pressed against the cold plates and I hate watching it. When it was over she wanted the vests to be hung up ASAP and wanted us out the door. Thankfully the first ones were fine. Sometimes if she moves during the X-ray we have to do it again. Just more torture. She had big crocidle tears streaming down her face. I didn't grab her and run screaming from the room but I wanted to. Then we went back to the office and saw the same doc we saw on Monday. She is really nice. She said Alivia's x-rays looked good just everything is compressed from the enlarged sleen. Alivia's WBC's came down to 133, her Reds were pretty good (9.7) and she needed a platelete transfusion. She also told us that she will be our transplant doctor when the time comes. Funny...I didn't run screaming from the room then either...but my brain sort of started choking. She gave us a time frame. Once we get to Hopkins and get the final word from the big wig then 6 weeks after that we will have the transplant. Now if you are like me you start doing the math. We are supposed to see the bigwig within the next week or two. So if you at 2 weeks today then another 6 weeks you get the middle/end of November. That means (for all those who's brains work like mine) that without a miracle we will spend James'birthday (Nov. 20), Thanksgiving, My birthday (Dec. 19th) and Christmas in the hospital. How is this my life? How is this even possible? So they will remove Alivia's spleen (this is my baby she's talking about!!!) change her mediport over to a broviac (which is the tubes that hang out of the body) and then start the massive (possibly lethal) doses of chemo. How do people calmly talk about all of these things? I did it today and I just felt numb. In fact till I started writing this I have been in a haze. Just getting by, just doing what I can for Alivia.
Then we got our transfusion (take 1 hour) towards the end Livi started to itch her neck and they realize she was getting hives so they gave her IV benadryl. She was completely asleep in just a few minutes. We finally got in the car around 4:00 and arrived home around 5. How much can one family take.
The only good thing today was taking in the toys. One little girl opened the toy chest (which was stuffed!) and it took her breath away she was so excited.
Thanks to Aunt Joanne for the toys...we will take them with us next week (minus one kazoo...Alivia had one and she loved it but it broke and we haven't been able to find one. So that was perfect..thanks!!) Thanks to Linda K. for the gift for me and the toys. Thanks to Julie and Dan for dinner tonight.
I'm drained, sad and so tired of this whole thing. We need miracle. NOW. Not later. Please God, Please
posted by Alivia's Momma @ 5:48 PM
23 Comments:
You were such a brave mommy to go through that again today. We all don't want to be here, but here we are. We are all in this together...Love, MOM
Nothing we can say except we love you and we will do whatever we can for you during this time. We are certainly praying!
Love,
Dan & Julie
Praying, praying, praying. Will never stop praying! and crying. So sorry that this is your life, Emily, but Alivia is blessed to have a Mommy who can and will do whatever it takes. You'll get her through this.
Praying, praying, praying...
i'm praying for alivia and you and everyone and everything. you're an amazing mother and i respect you and james so much. i love you all so much and will not stop praying.
Love,
Beth
I can only imagine how hard all of this is for all of you. Tonight I met with a Bible-study group, and we prayed together for Alivia and all of your family. I pray God will bring you the strength to find your way through this, and I continue to pray for Alivia's healing. Your dad told me today about a similar case where the child was healed in a way that could only be called a miracle.... Well, we would like a miracle for Alivia too! God bless and keep all of you -
Cathy S.
This is gut-wrenching, surreal. Emily, I am thinking of you guys and praying for Livi everytime I see the her wallpaper or screensaver on my computer (which is pretty constant throughout each day) I've contacted the blood bank here in Pgh and will be visiting them for a blood donation and marrow registration. They waive the marrow typing fee if you donate blood. Sounds like everybody benefits there, hug?
Praying for "NO TRANSPLANT"
Love you guys tons,
Grande Aunt Lisa
i dunno know how to respond. my brain goes to "freak-out" mode, then to dispair mode... because i know i can do nothing. nothing to make you or livi or james' life better; nothing to rid any of you of this craziness.
it is then at that point of hopelessness remember my Creator like i should have all along. Even though i fail, He is holding the world, the stars, the moon in place with his hands. Then all i can do is cry out a feeble prayer:
Jusus, oh Jesus, please heal livi. Do it in a way that we couldn't possibly attribute her healing to any other name. God please be glorified through all of this. Give emily smiles. and hope. Your will be done.
My heart hurts for all of you. Just wanted you to know that I am still praying for all of you, especially for God to heal Alivia.
Emily
Right after reading your latest Blog entry from your hospital visit, I read the following. You and your family our a part of my daily thought and prayers:
Bob Malito
“WHEN MY HEART IS FAINT . . . LEAD ME TO THE ROCK THAT IS HIGHER THAN I.”
Psalm 61:2
Most of us know what it is to be overwhelmed in heart, emptied like when a man wipes a dish and turns it upside down, submerged and thrown on our beam-ends like a boat mastered by the storm. Discoveries of inward corruption will do this, if the Lord permits the depth of our depravity to become troubled and cast up mire and dirt. Disappointments and heartbreaks will do this when billow after billow rolls over us, and we are like a broken shell thrown to and fro by the surf. Blessed be God, at such seasons we are not left without a sufficient solace: Our God is the harbor of weather-beaten sails, the hostel for forlorn pilgrims. He is higher than we are, His mercy higher than our sins, His love higher than our thoughts. It is pitiful to see men putting their trust in something lower than themselves; but our confidence is fixed on an exceeding high and glorious Lord. He is a Rock since He doesn't change, and a high Rock because the tempests that overwhelm us roll far beneath His feet; He is not disturbed by them but rules them at His will. If we get under the shelter of this lofty Rock, we may defy the hurricane; all is calm under the lee of that towering cliff. Sadly, the confusion in which the troubled mind is often cast is such that we need piloting to this divine shelter. Hence the prayer of the text. O Lord, our God, by Your Holy Spirit, teach us the way of faith; lead us into Your rest. The wind blows us out to sea-the helm does not answer to our puny hand; You alone can steer us over the bar between the sunken rocks and safe into the fair haven. We are totally dependent upon You-we need You to bring us to You. To be wisely directed and steered into safety and peace is Your gift, and Yours alone. Tonight be pleased to deal kindly with Your servants.
When there is "nothing" we can do but pray, we praise God to know that prayer is enough; indeed, it is everything.
Lifting you up and holding you, James and dear Alivia in our hearts, just as surely as our loving Heavenly Father holds you in the palm of His hands.
Deb Gilgore
(Julie Garner's friend)
Emily & James,
I'm Briana's friend who's been praying for you for a long time. We prayed for Alivia and you both last night at caregroup and will continue to plead for a miracle as well as for continued grace and strength for you all. Your blog glorifies God as you so candidly share this severe trial.
James' brother Chris is here living with us and serving our church family~a great blessing! So our worlds have gotten closer.
With love & prayers from family in New England
I have been reading your blog along with my daughter, Amy Wilhoite. I can relate to all you say, maybe just on a larger body scale. I know the pain you experience everytime you see them have to do another procedure on your baby. Amy is our first born and it seems that I have always loved her. We are also facing transplant and it just seems like she can't bear more. But our God is so good, eternally good and will be with her. I am so sorry that you have to face this at such a young age in your life. We will continually remember you, your husband, and of course, little Alivia in our prayers.
From one mommy's heart to another,
Anita Martin -- Amy's mom
I have been reading your blog along with my daughter, Amy Wilhoite. I can relate to all you say, maybe just on a larger body scale. I know the pain you experience everytime you see them have to do another procedure on your baby. Amy is our first born and it seems that I have always loved her. We are also facing transplant and it just seems like she can't bear more. But our God is so good, eternally good and will be with her. I am so sorry that you have to face this at such a young age in your life. We will continually remember you, your husband, and of course, little Alivia in our prayers.
From one mommy's heart to another,
Anita Martin -- Amy's mom
Emily,
I try to read your blog every day, sometimes I check it a couple of times. I am always in awe of your easy honesty; your willingness to share your sorrows, struggles, encouragements from the Lord, and your fragile humanness and humilty.
In one sense we are ultimately alone with our heartaches and our God, but in a larger sense you are fastened into a worldwide family group that has its arms wrapped tight around you and your little cutie pie. james too. These arms of love are held fast in place by the creator of the universe.
Simply put, the love of the church unified has envelped you and yours, and longs to hold you(plural) close. When you are weeping alone in your room, most likely somewhere someone is weeping with you. As you continue to pour you life out into this blog, you allow the rest of us the oppertunity to love on you and share in your sorrows, and your laughter, (cause even when most painful life should always include laughter) Thank you for allowing us the honor of walking this lonely rocky, road along side a beautiful woman of God.
most genuinely
a sister/mother in Christ,
sandy kimmel
Hey Em,
You sound like you are being pushed to your limit girlie. Take a deep breath and try to lean on your family. I'm sure you are and it's hard on all of you. I just wanted you to know that I'm thinking of you and James and praying. I'm meeting up w/ Rach tonight and hopefully I'll be able to help her out w/ starting this thing up. Take care.
-Steph
We are praying for you all the time. God will carry through the toughest of times. No doubt. You are a wonderful mom with an amazing family. God bless you!
May the Lord strengthen you, uplift you, and give you a peace the most surely passes all understanding. May His Spirit tangibly enfold you in His arms.
There is no doubt that you are an amazing woman of God.
Dawn Lingenfelter
Emily and James, I will continue to pray, pray, pray and spread the word asking for other to pray. I am praying for a miracle and ask that Lord hear our prayers for little Livi. You and James are both unbelievably strong people. I can't believe all you are going through! Please know that so many are in your corner and we care about you all so very much! It sounds like the toys are going over wonderfully. My mom is still knitting little hats. Betsie
We are praying for you all and your beautiful baby girl each day.. the Lord is holding you all in His hands and in His heart. We are praying for your grace, your strength, and your baby's healing.God Bless you all. The Vandernecks
"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes say my unformed body."
Psalm 139: 13-16
He has a plan. These words have provided me peace many times through the years. He has a plan.
Thinking of you all today, as always.
I am not exactly sure what to say, other than I will be praying, praying , praying. I was brought to tears when I read this entry. My heart aches for you, james, and livi. You are so brave to go through all that week after week. I am praying for that miracle more than ever now. Remember that God planned this all for a reason that we will never know,even though that is so hard to imgaine. Please give Alivia a hug for me. She is so little and goes through so much, but still seems joyful when I see her. I am praying for you and James.
God bless,
moriah
I spent this last weekend at a Beth Moore conference being reminded about how measureless God's love is. He was very detailed about creating the entire universe according to such specific, exact measurements, yet His love for us is measureless.
From Ephesians 3:
And I pray that you, being rooted and established in love, 18 may have power, together with all the saints, to grasp how wide and long and high and DEEP is the love of Christ, 19 and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.
20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.
Just how deep is God's love? Psalm 18:16 says "He reached down from on high and took hold of me; he drew me out of deep waters."
I just wept. I was thinking about the dark holes in life where we think that God's love surely can't reach us. I thought of you and Livi and cried and prayed out to God. He is measureless in His love and it is deeper than the pit that buries us.
I am at God's feet thanking him for being a God who is in control. Like Paul on the boat during the storm, it is a rough ride and seems hopeless. Yet we have a God who will be with us during the storms of life. He will never leave you or forsake you.
I love you and we are praying for a miracle for Livi.
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