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 +94
The pherisis went fine. It took about an hour and she slept through most of it. The catheder is incredibly uncomfortable for her. She is always aware of it and screams if you get near it. She can't sit up until it comes out (she can only be at a 30 degree angle at most) she is just having a terrible time. She is getting antinausea meds around the clock so she doesn't throw up...mainly because the idea of trying to get her into a position where she can throw up without asperating is was too overwhelming for me. Now instead of being up all the time the meds knock her out a lot of the day. It is hard to watch either way...crabby or overly sleepy. I miss my Livi.
She may get a CT tomorrow and then Thursday will have pherisis again. After pheresis she will probably get chemo again. We were dreading this. Seems like each thing we dread ends up happening. Tomorrow they will check her IMG level to see if it has shot back up. That is what they were trying to get rid of with the pheresis. Tomorrow if the level has shot back up that means she has a secondary cancer. The only way to get it under control is to give chemo. Supposedly it would be a small dose that her marrow will handle well. Still it is terrifying to face chemo again. I keep waiting for the good news to come. We need a miracle so badly.
posted by Alivia's Momma @ 10:12 PM
43 Comments:
praying and praying
we all are
love beth
Praying hard for your miracle today, right now in Jesus name, Lord God, PLEASE touch this precious child and heal her. God you are ALL powerful, we lift Livi up to you right now. Thank you God for her life, thank you God for all of the lives she has touched, Oh Father, Please heal her totally. In Your Name, Amen
We are with you... praying for that miracle!
Calvettis
Praying with you for strength for little Livi's body and complete healing for her and wisdom for the doctors and peace and strength for you. And for God to be glorified in all of this. Love, Gina
Dear Sweet Jesus, we come to you right now and lift up precious Livi to you.
You know what she needs. You know how to make her better. Please heal her Lord. Comfort her. Restore her body. Bring her laughter back. Calm her fears. Help her to rest and know you are with her. Lord we are asking for a miracle. We know that is your specialty. We are looking to You Lord, not the doctors. You are the Healer. Please give the doctors wisdom. Please give Emily, James and the rest of the family strength to persevere through this very difficult time. Give them hope Lord.
Thank you for hearing our prayers. Thank you that you love us. We ask all this in Jesus name, Amen.
Vicki G.
Praying extra hard...
Neysa and Nathan
Praying for that miracle.
Carol M.
We all stand with you in prayer. I know that at times it feels like the situation will never end, but the Lord has it in His hands and knows what all of you need. His love will cover you and sustain you, His peace will wash over you and He will continue to care for you all. He holds Livi tightly and in ways that we cannot comprehend giving her just what she needs at this time. We will continue to ask for that miracle and know that our all loving Father will protect her and the rest of the family as well.
Waking or sleeping Thy presence is our light!
With love and prayers,
Norm and Pat Burns
My heart is aches so badly for you. I will continue to pray for a miracle for Livi and peace for you all until it comes. Praying! I will not stop!!!
Love and prayers from the Bueches.
Emily,
My heart hurts for you. I cannot even begin to understand what you must be feeling.I would encourage you to hold onto what you know to be true and right during these hard days. We know that God is good, faithful, merciful, kind, loving, and the great physician. He will not abandon you in your greatest hours of need. Continue to cling to the cross.
Still praying...
Love,
Lynn
we are praying for a miracle today. praying that the medicine will work in Livi's body. praying for peace as you keep facing decisions that you dread. He will never let go-through the highs and through the lows. praying that His grasp on your lives would be evident in the details today and that peace would abound as the decisions and treatment continue. love you-jamie
Praying and believing always for precious Livi's healing and for every member of your family.
With love,
MarieTrunzoWatters
Jesus said:
"Never will I leave you; never will I forsake you."
Praying for your miracle!
Mary Ann K.
Emily, my tears blur the screen and my heart aches for you. I am praying for the miracle that heals your precious baby. It's so hard to deal with these emotional roller coasters, I'm sure. But this morning I was reminded of James' post and I went back to find some of it. His words really touched me...
"And now He is getting us through this. He is with us today. He is sustaining us in this moment. I don't have to worry about tomorrow or later tonight or what might come next year. God will give me grace for that situation.Then. Not now. This idea is very encouraging to me. It reminds me that God is good and that even when I can'tunderstand things or when i don't believe, He is still with me. He is still sustaining me. Even when my unbelief is bigger than my faith. God is still faithfull. This gives me hope."
I truly believe that God has Livi in His arms and is carrying her toward a cure of this horrible disease. It's just SO hard to watch her go through all of this.
Hang on to your faith - it will help you through. And you have SO many people storming heaven for you!!! He will hear us!!!!
Hugs, Vicki Moore
Praying For Healing
You are in our hearts
Phyllis
praying for healing...praying for God to intervene...
Psalm 109:21,26,27
But you, O God my Lord,
deal on my behalf for your name's sake; because your steadfast love is good, deliver me!
Help me, O Lord my God!
Save me according to your steadfast love!
Let them know that this is your hand; you, O Lord, have done it!
Lord deliver Alivia from this dreadful disease because of your good and steadfast love to her. Save her and let it be known that you have delivered her, you have done it!
praying...
We are praying for you and your precious Livi each and every day. God hears, and He is with you in that hospital room, in every decision. Lots of Love, the Joneses of Salunga, PA
wow I can't imagine all that you are going through and how it must hurt to have all this bad news about your little girl praying for a miracle and that God would comfort you and give you strength
thoughts and prayers sent from Alabama Haughery's
Emily, your strenght through this is amazing. Though you don't see it and say "what else could I do, Livi needs me", you are being held up by God's hand. How, you say, look what he has allowed to happen. Well, I can't understand either, and never will. So we will keep thanking God for sustaining Livi through this terrible trial, and that he sustains us each day by help us to even be here to care for her each day. It doesn't matter that you are "numb" to each new complication, that we have hoped and trusted would not come, and yet they have...you are Livi's rock and comfort. You have been asked to sacrifice all your wishes and dreams to go through this...we love you. Gigi
We are never far from you in our hearts, friend! We love you and are praying!
Julie
i hear Gigi...and see God giving you strength for this trial. you are a such wonderful mother to Livi, Emily. praying for you today...that the Lord would comfort you, give you extra strength and hope and that He'd heal beautiful Livi. xoxo
Still reading and praying for Livi's miracle.
Peggy
Praying for you today, Emily, and for you, Livi. You can do this in Him today. Love, Janet S.
Half of NY is continue to pray for your family.
praying, praying, praying for that miracle!! Be encouraged! God is still listening. He knows exactly what Alivia needs. I'm sure it's hard to trust when it can be discouraging. Praying for the dotors to have wisdom! Sue F.
Emily and James,
Your family is on our minds every day. We pray as a family for you all, and ask God to heal Alivia. I know God is sustaining you because if He wasn't you wouldn't be able to blog or be by Livi's side for the past three and half months.
There are so many prayers coming from Indiana, PA, I hope you fill comforted by them.
Love,
Kristy Scherf
With all the Love, Support and Prayers Livi is getting, she has to come through!
XO Dishy
the kimmels will help pray in that miracle. We love all our covenant kids...
Dear Friends,
My heart is searching for words that will not come...only prayers for unending GRACE for all of you.
Hold onto your faith in Jesus, He will never forsake you or leave you.
Praying in California for a healing miracle. We love you guys and are praying for your continued strength.
Love
Uncle Mike
praying
I pray and pray that God will intervene with His powerful touch and heal Livi of this horrible disease. You are all in my prayers!
*Your Canadian Friend*
We are constantly praying in Pittsburgh. Betsie
Emily,
I keep trying to put myself in your shoes and I know I never can.
I find myself constantly thinking of Livi, praying and asking for CONTINUED great strength for you & James, the Allens and Haugherys. I have seen work that only God could have orchestrated, I have heard many stories of his grace sustaining those who were experiencing great trials. We all know of situations that only God could have had a hand in.
We do know he is alive and well and even though I can't get my brain around this and I'm not you, please be encouraged because I know you know God's promises are the truth. "I can do all things through Christ which strengtheneth me." Phil 4:13
Someday we will understand but now it is faith and WE HAVE SEEN his grace and mercy. He will guide you through each step. This is the fast and furious life.
Livi is really something special and the toughest little girl I know. You must be the second toughest and Gigi the third toughest!!!
YOU ARE SO ENCOURAGING - There are thousands who are with you.
Love,
Diana B.
Dear God our Father,
Thank You, Lord, that we may bring every concern before You. We praise You for all that You are. We lift Alivia to You for healing. We ask You to heal her completely. In Jesus' Name, we ask You to remove any cancer and all the negative effects of any treatments. Lord, please give Your strength to this dear family, and Your wisdom to all those who treat Alivia. We pray in Jesus' Name. Amen.
Praying that miraculous things will happen for our precious Livi as we all try to get sleep tonight. God does not sleep. May He give all a peaceful night and continued encouragement each day. Thanks to all who persevere in prayer so lovingly for our families. Love again from Marmie
We are so sorry to hear of Livi's struggle, and are praying she is heaked immediately from this new problem without needing chemo. We are praying her precious little body has a very quick healing, and you all continue to be blesed with faith , strengh and grace to help Livi and each other through this ordeal. Lean on the Lord- He will sustain you through all things. We are praying for special blessings for Livi- she needs healed now, she needs to go home. God Bless You all and the doctors to use their wisdom and kindness now. Love to you all, the Vandernecks
praying for you today, Livi. May the Father send His angel with healing to hover over you this day.
Praying . . . in Jonestown
Thinking of you and praying. You are all in my thoughts.
Praying for you all but most especially, valiant Alivia.
Bev
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