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.Day +101
We are past 100 days post transplant. Crazy. That is supposed to be a huge marker for whether or not the graft worked. Obviously it did but that is not the problem anymore.
The chemo didn't do what the expected. We are still hopeful that it will start to work. But her Viscosity was very high today and her IGM went up quite a bit in the last few days. It is over 8000 now. She had pherisis again today. Usually they don't leave pherisis catheders in for longer than a week because the risk of infection increases each extra day so that is another new concern. After todays pherisis I helped the pherisis nurse change the dressing on the entrance site. WE got Livi some morphine beforehand cause the whole area is sore.
Yesterday my dad and I (and a friend) went to the funeral for Katie Mae. It was all in German. I didn't understand 99% (there was an english word every once in a while) but I understood the heart behind it and the feeling. It was extremely peaceful and I felt it was beautiful. It was hard to be a funeral for someone who had passed away from the same treatment that Alivia is getting. I know Katie's leukemia was a different kind but it is still hard to see a transplant fail. I feel for the family. They are such a sweet, kind, positive family and I will miss seeing them each day.
I know God is able to do miracles. I know that Livi could be healed tomorrow and that is my prayer. It is so hard to watch her suffer day after day. It is hard to get the numbers back each day and have them be worse than the day before. I hate that she knows what each and ever beep means, she looks at me through tears sometimes and says "no hurt" and it rips my heart out. THis miracle is taking a long long time.
Thank you for the stickers from..
The Regiembal family...miss you guys
Gordon Stolzfus
Ang and Scott
Monica Coffey
Matt and Monjet Haughery (and cutie boys)
Jeff and Sue Anderson
Jeremy and April Stolzfus (Lane and Ava too)
Mike Gerhard and coworkers
Briand and Holly Wadding
Lisa Evans
Thanks to
the Pete's for the generous gift
the Parrow's for the Lowe's gift card
The Camp's for the cute Elmo shirt,doll and tissues and for the starbuck's cards
Georgann Kachur for the book and coloring book.
We are blessed by each and ever single peice of mail we get!
posted by Alivia's Momma @ 11:53 AM
35 Comments:
Praying for you dear Emily and James, stay strong...
Emily,
We believe in miracles. My husband came home from work to find me at the computer with tears in my eyes and he suggested that we just pray. We both cried as we prayed for complete healing for Alivia. We prayed that He would touch her body and free her from pain and give to her peace and comfort. This was our prayer. I know that He can heal her and that nothing is too big and that is our prayer. Lord, please heal Alivia.
Love,
Beth
This valley makes my heart ache and has brought tears to my eyes today. How much more you guys. The only thing that brings comfort is to know that God says "I Am".
Uncle Matthew
Oh Lord, please heal Alivia and give peace, comfort and strength to her, to Emily and James, "Gigi" and "Pa" and Cynthia and Bill and all the others who love and care for Alivia. Thank you Lord that you are watching Alivia and holding her in the palm of your hand. Gina
Sometimes when I come into Livi's room I purposefully do not look at the #'s...but eventually you do and your heart takes a plunge. "You have not brought me this far to leave me now O Lord, so I will yet praise you more and more". I may have my head stuck in the sand, but I cannot continue any other way. I love you, Mom
P.S. These are not the dreams I had for you as my daughter, so I cannot imagine what you are going through.
At a loss for what to write, other than, praying, praying, praying. God is working. I know it. At times it's hard to see. Praying that Alivia will have many miracles in the days ahead. -Sue F.
Pampers codes:
77J6DRJV6W63TMC
77FDWVFM6HMGN96
D4W3VKTXPFKN3RP
(all from BJ's)
Gretchen,
I am always standing in awe of your daughter....I can't even tell you how Emily has touched my heart. Her love for Alivia can't even be described in words....yet it is so easy to see, that she follows in your footsteps. God Bless You...I can only hope to be half the mom that you are.
Maryann Plesnicher
Humbly expressing our support in love and prayers.
Tom
We beleive in miracles too and pray one for Alivia everyday. You may not feel like your're stong right now, but when I read what you write, I think to myself, man she is one strong mom. I know it can only come from your faith in what God can do. God, please heal Alivia TODAY!
I pray for your little one every time she enters my thoughts....and that is often these days. You don't know me and we will probably never meet but I have everyone I know praying for your little girl. I hope it brings you comfort to know all the people who pray daily for Livi.
Lost for words, full of tears, continuing to pray. That I can do...so I will.
praying and praying some more. Be encouraged that our God is one of grace, love, and comfort. Its good to see you having faith in the Lord even in the midst of sadness and exhaustion. Our family, friends, and church is constantly praying along with us! Love you guys.
WHEN that miracle does come through, it will be a wonderful time to rejoice. In fact, I think I will thank God in advance. I am praying so hard for you guys. God bless.
Praying for strength. Praying praying praying... not sure what else to say.
Dear Emily, Sometimes there just aren't words ... just tears. and a heart that cries out to our Father for breakthrough ... Lord, Livi needs a breakthrough. You are the God of the Breakthrough. You supply our needs. Bring the breakthrough ... please bring the breakthrough. Heal Livi.
Janet S.
My heart aches for you Alivia.
Praying for you Alivia that God heals you.
Love,
Sara
My heart aches for you emily. I pray that the Lord will heal livi. Remember to keep trusting God.
love,
moriah
My heart breaks with you, Emily, as I imagine that pumpkin saying "no hurt". It's a crime that she even knows what hurt is. I pray for "no hurt". I pray for guidance for the doctor's to put together the perfect regimen for Livi's sustained health and that it be administered with utmost care for Livi's comfort. Better #s. MIRACLES.
Love, love, love...
GAL
Sending Love and
Prayers from Indiana.
.. We have Alivia in prayers and you're in our thoughts EVERYDAY.
It is awesome to know that Baby Livi is in so many hearts.
Peace Be to all
Phyllis
Emily, weeping for the hurt sweet Livi feels and for your hurt seeing her have to go thru it. It's hard to see the keyboard to type when weeping but the tears are for for the amount of pain our whole family feels. Can only keep the faith and continue to pray . Had a call today from one of the ministers at church asking about Livi and saying she will continue to be first on the parish prayer list. At every service her name is first read on the list and first also on the daily prayers on the telephone prayer list. So many people praying faithfully. Today in my World Vision letter the verse was Isaiah 41:13, "For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you. " How comforting to be reminded in such a way to keep holding that Hand. Love you , My dear ones. Your Marmie
Not to sound redundant here but I can't help adding my heartache and tears and prayers for "no hurt" for Livi. God, hear the innocent, precious, honest cry of that baby girl. I know you do! And it must hurt you too somehow. I just don't understand. I guess love carries this price. or something.
Aunt Marcy
We are so thankful to God that Alivia is past the 100-day mark. God has daily performed miracles for Alivia. There are still miracles to pray for but let's draw faith and confidence to continue to pray from the many answers to prayer we've already seen in her life so far. Aunt Cheryl
I read your blog with tears in my eyes today. Livi is so precious to God and to you. I will continue to pray for that miracle we are all waiting for. I pray you are blessed by all the faithful friends and family you have!
Still faithfully following your testimony here in Connecticut. My heart weeps for you as you travel this unbelieveable journey. Sometimes the only peace to be found for me is the fact the I know that God knows the end from the beginning when I am experiencing a trial. I choose to believe and lean heavy on the everlasting arms. Know that we are praying for you and weep for your pain. We are made to worship. Love Karlyn S. <>< (Lyndons mom)
"Which of you, if his son asks for bread, will give him a stone? Or if he asks for a fish, will give him a snake? If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!" - Matthew 7:9-11
Emily,
My heart goes out to you. We are praying for Alivia, James and you.
When Alivia looks at you through her tears and says "no hurt", and it rips your heart out, I am sure that you remind yourself of thre reason for the pain. That this "small hurt" is temporary and is necessary to produce a long-term, good result and to prevent a bigger hurt. Alivia does not understand. And, although it hurts, it is the wise thing for you to do for her.
Just as Alivia does not understand, we do not understand. Just as Alivia looks to you in trust through the pain, we look to God. And He gives us faith to trust. If it was not hard, we would not need faith.
As you look to your Heavenly Father with tears in your eyes and cry out "NO HURT, PLEASE, NO HURT!" for your daughter, He, in His wisdom, knows that that this "short-term, small hurt" is necessary to produce a good result and to prevent a bigger hurt.
As the verse says - we are evil, yet we still want the best for our children. And God is good, so very good. So how much more He must want the best for us.
So, I hope the following verses are comforting and encouraging and not just appearing to be trivially thrown out, for I share them with compassion.
"So we do not lose heart. Though our outer nature is wasting away, our inner nature is being renewed day by day. For this slight momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal." - 2 Corinthians 4:16-18
God, please heal Alivia! Please encourage James and Emily!
We are praying!
John Q & Family
Bethel Park, PA
Hey, girlie...I just realized I didn't tell you yesterday that I love you and I'm praying for you! I read the blog, but forgot to post a comment. So, let me say it today and you can multiply it by the number of times you need to hear it...I love you and I'm praying for you! I really miss you and I miss seeing Alivia. I can't wait until she and Jude can play and laugh together. I have faith that it will happen, and hope that it will be sooner rather than later. May God bless you in ways that bring you peace and comfort to endure each day, Friend!
Love,
Julie
May you feel God's comfort and peace as you face the day! We will continue to keep Alivia, and all of you for that matter, in our daily prayers!
Love,
The Freemans
I choose to believe you are 100 days closer to coming home....and that God is working on a huge miracle and lots of partying to follow. Don't worry...we'll all be strong for you when you cannot...and God is carrying you on the days you don't even know how to wake up....but you do for Livi. Don't forget what a great Mom God is enabling you to be....
I do not think anyone could read your last entry and not be touched deeply. Your trial is so painful. You are right to acknowledge that God can do a miracle in Livi's life. Does anyone know why he is prolonging His touch? No. But stand strong and continue to trust that He is doing something.
I couldn't even respond to your words last night - I felt so broken by your pain, every time I woke, and so often today, my thoughts and prayers are for you and your daughter. I was reminded of the thrid chapter of Lamentations. This section of scripture is titled, "Hope in the midst of affliction"
The living bible reads: I am the one who has seen the afflictions that come from the rod of the Lord's anger. He has brought me into deep darkness, shutting out all light. He has turned against me. Day and night his hand is heavy on me.
He has made my skin and flesh grow old. He has broken my bones. He has attacked me and surrounded me with anguish and distress. He has buried me in a dark place, like a person long dead.
He has walled me in, and I cannot escape. He has bound me in heavy chains. And though I cry and shout, he shuts out my prayers. He has blocked my path with a hight stone wall. He has twisted the road before me wth many detours.
He hid like a bear or a lion, waiting to attack me. 11)He dragged me off the path and tore me with his claws, leaving me helpless and desolate. He bent his bow and aimed it squarely at me.
He shot his arrows deep into my heart. My own people laugh at me. All day long they sing their mocking songs. He has filled me with bitterness. He has given me a cup of deep sorrow to drink.
He has made me grind my teeth on gravel. He has rolled me in the dust. Peace has been stripped away, and I have forgotten what prosperity is. I cry out, "My splender is gone, Everything I had hope for from the Lord is lost."
The thought of my suffering and homelessness is bitter beyond words. I will never forget this awful time and I grieve over my loss.
v 21 (Here the good part comes) Yet I still dare to hope when I remember this:
The unfailing love of the Lord never ends! By His mercies we have been kept from complete destruction. GREAT is HIS FAITHFULNESS; His MERCIES begin AFRESH EACH DAY! I say to myself, "The Lord is my inheritance, therefore, I will HOPE in Him!"
The Lord is wonderfully good to those who wait for Him and seek Him. So it is good to wait quietly for salvation from the Lord. And it is good for the young to submit to the yoke of His disipline... v 31 For the Lord does not abandon anyone forever. Though He brings grief, He also shows compassion according to the greatness of His unfailing love. For HE does not enjoy hurting people or causing them sorrow.
Lam. 3:1-33
Lord Jesus, I pray right now for refreshing for this family. Oh God I pray for precious Livi. Oh Jesus I pray that she will no longer have to hurt. I pray right now for her miracle.
Jesus, please!, we are desperate for this child's healing. Your word says you do not delight in hurting people or causing sorrow - Lord we request that you move in Your power and touch Alivia and heal her. Your word says You are the God who heals us. God please heal Alivia today.
God please bring your sweet mercies to this family. Touch Emily, oh God, be with her. Please comfort her as she has seen her child suffer too much.
We trust your timing. But we desperately seek You for your healing touch. God please move. Please change these circumstances.
Jesus - we need You! We love you and we trust you. Thank you God for hearing our cry. Thank you for being a faithful God. Thank you for Your Word.
In Jesus name,
Amen.
I will continue to pray. I wish I could do more. I can't wait to rejoice with you for Alivia's miracle. And I hope to someday hug her and tell her how much her life touched me.
Praying...
Holly W
Emily and James,
I have not met you in person, Emily but I have met James. I work for a company that was contacted to help with providing Alivia a more sterile environment to come home to. The President of our company has three young daughters of his own and was touched by your circumstances. I have been reading your updates about Alivia since we were first contacted but have never left a comment. I do so now, not as an employee of any company but as a parent who wishes you well. I'm not a part of a church group or prayer chain and I can't quote any Bible verses off the top of my head, but I can say from my heart that I wish you well as you go through this difficult time. Love is a very powerful thing and you all have so much. God bless you and your family.
Sincerely,
Jeanne Wise
my heart aches and I my eyes are full of tears as I read your blog today...I can't imagine what you are going through you are so strong I will continue to pray for your dear little girl....please Lord do a miracle in Alivia!!!!
Dear Bloggers (and precious Livi family),
As I have been praying for Livi since Emily's last update, I have felt a stirring from the Lord to ask you all to join with me, and with each other, to fast and pray together as a group for Livi's healing. We have already seen the Lord bring success through the transplant. We all long to see Him heal her completely. If you would like to join me, on Friday, perhaps fast a meal, or fast something else that you do daily and pray ... pray for Jesus to heal her.
You know, I have been so touched by the number of people who are praying for Livi, who love her whether they have met her or not. You all truly manifest the heart of Jesus.
Sincerely, Janet S.
Continuing to keep you in my thoughts and prayers -
Cathy S.
We continue to pray for complete healing Lord. Please grant peace and give your wisdom to the doctors and the James and Emily. Thank you for loving Alivia and carrying her through each and every step.
The Cranmers
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