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 +80
Today is day +80 so if you are good at math or keeping track you will realize that means we have been in the hospital for 90 days. We came in to the hospital at the end of February and here it is almost June and we're still here. Things are not going as expected. They aren't going well at all.
We are learning more about the PTLD each day. It is a pretty scary disease. If you looked at it under a microscope it would look like cancer and it acts like cancer. This is one of the things they mention in the million form you sign at the beginning that are a slight chance. PRES isn't even mentioned in those forms. We are in some bad waters here. She had the second dose of Rituximab yesterday. It went fine. She threw up throughout but otherwise didn't react. Friday she will have her third dose. Tomorrow or Thursday she will have a CT and repeat endoscopy. She will have to be intubated this time because of the giant lymph nodes. We are praying they can work it out to do them right in a row. Otherwise she will have to be under anesthesia and intubated two days in a row and in her condition that is not a good thing. People die from this. People end up on ventilators and it is all but impossible to get them off. Odds are we will be doing another dose of chemo soon. So all that excitement over the last chemo may have been a little too early. She would recieve cytoxin which is the big bad chemo we were so nervous about early on and so glad to be past. THey took blood to do a test today to see if she is producing the right kind of WBC's. WE want T-cell not B-cells. We desperately need a miracle. I feel depleated and at the end of the rope. I jsut want to take my girl home...happy, healthy and home. Part of the PTLD is that her body is eating up the red blood cells and platelets at a really fast rate. She had gone almost a month without a transfusion and now she got one 2 days ago and is getting another today. Along with everything else please pray that we are able to take this weeks' docs words with a grain of salt. He is smart but has a terrible bed side manner. HE only tells you the worst case never anything positive. He leaves us scared and deflated. Pray we are able to remember he is just a man and not in control of anything.
thanks to..
the Mckelveys' for the card
Patti Agosti for the gift card
The Millens for the gum and magazines
Rachel for the visit. IT was my bit of sanity for the week. I love you tons. Oh and for the fun gifts for Livi and I.
Andrew we are so glad you came to visit. It was nice to have my whole family together for a few short days. Next time lets make the visit at our house.
posted by Alivia's Momma @ 10:18 AM
43 Comments:
YOU SWEET FAMILY -- THROUGHOUT THIS WEEK I PRAY THAT YOU RECEIVE EXTRA BLESSINGS..
LOVE TO ALL
PHYLLIS MILLER
Praying and praying. Sorry that you are being bombarded with scary news. I can't even imagine what it is like for you. Know that you are covered by many, many prayers.
Much love, YOders
praying, praying, praying.
we love you all,
kristi
We'll be praying. Glad you had family visit.
love,
Viv
I feel like shouting, crying, wailing and pleading for you guys. I am crying out to the Lord to give you guys a miracle. I do all of this because I know He can provide a mircale. I believe that it can happen (see, for example, Kylie's story: http//www2.caringbridge.org/ga/kyliescorner/index.htm ).
Healing can come for Livi. You guys can walk out of that hospital one day. It can happen. Please know that I will keep praying for your sweet girl. God bless you guys,
Emily-
My heart goes out to you and your family. Praying for God's healing for sweet Livi.
Jen Clemmer
Praying, praying for you all. Crying out for the miracle you so need right now.
Blessings,kathi baillie
definitely praying for you all...and for miracles galore. kiss that sweet girl for us. much love.
Praying!
Maryann Plesnicher
Praying for strength for all of you, especially Alivia! Praying for a miracle so astounding the doctors have nothing left to say!! The road you are headed down is dark, but he holds the map. He knows where you are headed and in due time, will provide you with a light at the end of this long tunnel. Just remember he can see it all clearly. Hang in there, mommy. You can do this.
I check your blog all the time and you are all constantly in our prayers. I don't really know what to say because I know sometimes it all seems trite - just know you're loved.
After explaining to my children what a miracle was, they started praying every night for a "miracle for Alivia". We will keep praying for her.
Melissa Stoltzfus
Not forgetting to pray for you all - for strength, grace, and spiritual renewal, and of course healing... Even more than all of us reading your blog, the Lord Jesus does not cease to plead and pray for you at the throne.
Sara Brode
Praying! And will share all of the latest with those in our C.G. so they can all pray as well. You know how much we love you, and I am so sad with you right now. Trusting God's promises!
Love you,
Julie
Oh, Sweet Jesus ... Lord of Life ... come quickly. Janet S.
Emily, I want you to know that although the news is scary and the pictures of sweet Livi are heartbreaking, we continue to press into the Lord for a miracle. It is not hopeless. We will be praying all the more, perhaps even spurred on by the current circumstances. Not giving up, not throwing in the towel. He has assigned us to pray and believe in Him. So we will do that, even if we cry while we pray. Be encouraged in the Lord's great love for her, and for you. WIth love, Janet S.
We continue to pray for strength peace for all of you!
Matt and Kim R.
we will continue to plead for a miracle for Alivia and grace for you all...
the kings @ lolc
My heart is so heavy and I'm at a loss for words... so we continue to pray, begging for God's mercy and grace...and for a miracle! May you know his peace!
Please know that I am praying. I have been consumed with the desire to pray for her all of the time.
Praying and believing that God will heal your sweet baby girl... and praying that you will know God's presence daily as you trust him for strength and much wisdom.
love, the Teeters
Praying for you all.
Heidi
I can't imagine how tough this is. I pray for you. I am at loss of words. God knows my heart. He knows your heart. God loves you and Livi :)
Crying as I pray for all of you... May you know the sustaining grace of God in this dark time.
Sustaining Grace (by John Piper)
Not grace to bar what is not bliss
Nor flight from all distress
But this
The grace that orders our trouble and pain
And in the darkness is there to sustain
Much love and many prayers,
Debbie P.
I absolutely hate that you are going through this. Continuuing to pray that God completely sustains and heals Livi--and brings comfort to your whole family as you navigate this very difficult period.
Don't what else to say except that we're praying for Livi!
Dear Emily and James, Please remember (when these difficult times and decisions come) that God KNOWS EVERYTHING and knows what you all are going through. Don't lose sight of that!! He is with you every step of the way and in it completely! Be encouraged! He loves you all and little Livi MORE than you can imagine, so rest in that knowledge. He has not forsaken you. God bless you and keep you. May the Lord of all give you strength, guidance and encouragement. Little Livi and all of you are being prayed for by more than you probably can comprehend! A faithful prayer partner.
We are all still with you in prayer, Haugherys.
Emily dear, You are all precious in His sight. Surely goodness and mercy will follow you......Loving you and praying mightily. Marmie
praying praying praying reading this post and looking at the picture saddened my heart and brought tears to my eyes please Lord do a miracle for Livi thanks for letting us know I can't imagine what your going through
Becca
Thinking of you all so much today and praying for a miracle!
Our church prayer chain just sent your blog address so we are all praying for you! I'm doing a devotional right now on the names of God and the name I am studying this week is El Roi which means "the God who sees me." Please remember that God sees you and Alivia and watches over you no matter what. May you feel His peace and His presence in an amazing way today!!
Lori Fischer
Praying for Livi and for you all, too.
Steph Freeman
I was brought to tears by that post. My heart aches for you and your family. I am praying for a miracle. I also pray that the doc may surprise you and tell you some positive things, who wants to hear negative all the time, but like you said remember that he is just a man, and doesn't know as much as God does! I loved all the pics!!:):) Livi is still soo cute! Give her some kisses and hugs for me, which I am sure you will have no problem doing. I will pray that you guys will aslo be able to go home soon. I hope this week will turn out better than it has started.
love ya,
moriah
"The Lord bless you and keep you; The Lord make his face shine upon you, and be gracious to you; The Lord lift up His countenance upon you and give you peace." Numbers 6:24-26
He Giveth More Grace (by Annie Johnson Flint)
"He giveth more grace when the burdens grow greater;
He sendeth more grace when the labours increase;
To added afflictions he addeth his mercy,
To multiplied trials, his multiplied peace.
When we have exhausted our store of endurance,
When our strength has failed ere the day is half done;
When we reach the end of our hoarded resources,
Our Father's full giving is only begun.
His love has no limits, his grace has no measure,
His power has no boundary known unto men;
For out of his infinite riches in Jesus,
He giveth, and giveth, and giveth again" praying for a miracle for Alivia!!!!
you are in our hearts and in our prayers. huge giant hugs for all of you.
love,
karen
I think this must have been very hard to write because you had to put into print some things that are so scary. I thank you for doing it, though, because it helps us to pray more specifically for your needs and also can help us to be more present with you in spirit. I pray for your doctor also - not only for his wisdom in doing everything exactly right for Livi - but that he may be filled with a spirit of hopefulness that will radiate outward from him and comfort every patient and every family member he interacts with. I pray for the Lord to help you tie a knot in that rope you are at the end of, and I pray that He may buoy you up as you hang on. Keeping all of you in my prayers -
God bless -
Cathy S.
I ache for you guys. You don't know me but I'm a friend of Briana's (same church). My prayer: Dear Lord Jesus, have mercy of Livi. Have mercy on her body by healing her. Please regenerate T cells, Lord Jesus. Send a miracle. Protect her parents from hopelessness, and give them peace and courage and wisdom. Let them know step by step that you're guiding their decisions and holding them close to You."
Keep the faith; no eye has seen and no ear has heard the glorious things He has prepared for you.
Praying for all of you, especially Livi. Trusting in the God of miracles. You are not alone.
Vicki G.
Praying for you and your dear family...
James and Emily,
Just wanted to let you know how much we appreciate your updates and tell you that your families continue to be in our prayers daily.
Much grace to you,
Brian and Sarah
Praying praying praying
Love
The Dragos
I am praying for a miracle. Much love, Betsie
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