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.What now?
So todays visit was not a good one. Alivia did well but her white cell count went back up to 200. So we are uping the dose of hydroxeuria again and we'll see what that does over the weekend. If by Tuesday it isn't working we will start Vincristen (spelling might be off) that is an IV chemo and frequently used with Hydroxeuria. In the next few weeks we will be going to get a central line put in. We are getting a broviac (spelling again) which is the type of central line where tubes are always hanging out of the chest. That will be in for up to a year. The doctor called this evening and said one of the reasons for doing it is so that it is under controlled circumstances instead of an emergency. And most kids lose their hair with this new med. I know this is only temporary and it will grow back but that is something I just didn't want to face. As she is now I can look at her and pretend sometimes that she isn't sick. Once the hair falls out it will be hard to pretend.
pray for..
...the WBC to drop over the weekend (if they do no new meds)
...all of the adults (me, james, my parents, james' parents) we are not dealing with this set back as well as Alivia.
...wisdom for our Doc (he feels stumped by this and suprised that it hasn't started to work)
...a miracle
thanks to Tina for the great dinner...it was nice to come home and not have to cook.
posted by Alivia's Momma @ 9:39 PM
14 Comments:
Hi, Emily -
I just want you to know I am still reading and praying. I am sorry you are facing a time of discouragement. Your family has all had so much stress to deal with, including your brother's accident as well....I wish you strength, peace, and a miracle. God's blessings to you.
Cathy S.
Emily,
Please know that you, James, Alivia and your families are continually in our prayers daily. May God continue to pour out his fresh mercies daily, sustain you with His strength and draw you closer to the throne of grace amidst this difficult set back. May you continue to grow in faith as you rest assured that "Surely His goodness and mercy will follow you all the days of your life" (Psalm 23:6). Thanks for your encouraging example at trusting God in all circumstances.
Grace to you,
Sarah Herr
Well, this is certainly not the news I was hoping to hear tonight. I am sure not what you wanted to hear either. Eden and I prayed for Livi and all of you tonight. She often just pops out with a prayer for Livi and even yesterday in the middle of the day! I will be praying for strength and hope for you all. And most of all for a miracle! Hope that you will be able to make it on Sat!
We love you, Les and the fam
will continue to think of you guys next week while we're gone...and pray. thanks for owen's sunglasses! he's been enjoying them. much love xoxo
will continue to think of you guys next week while we're gone...and pray. thanks for owen's sunglasses! he's been enjoying them. much love xoxo
Dear Emily,
I am so very sorry that you are going through such a hard time.
My thoughts and prayers are with you.
Maryann P.
Emily,
You, James, Alivia and your families continue to be in my prayers.
Much care,
Lori Randolph
I won't stop praying for everyone and for Alivia. I love you all so very much,
Beth
Emily, My name is Kelly Ross, & I am a member of Christ Community Church in Reading, PA. My husband Ben and I have met your in-laws a few times, and so have heard about your precious Alivia through friends. Know that your family is in our thoughts and prayers over here in Reading. I so appreciate your honesty and openness during this season. It is my prayer that if and when God brings me through such seasons with my little girl, I would handle it as faithfully and humbly as you are. Take care.
James, Emily and Alivia,
Know that I'm praying for you guys! Remember God sees the whole picture and we see only a small part of it. God is faithful. He knows Alivia's body and what is going on with it.
Remember God is strong and mighty for all of you to rest on and trust in.
Much love,
Sara
Hey guys,
I know I am far away, but please let me know if there is anything we can do. Seriously. At times like these all we have is the Lord and our family and friends. The Lord is there to give you peace and strength. We are here to stand by your side and give you support. Bobby and I both are praying for you guys constantly.
Love, Alissa
Hi, Emily,
So sorry to hear that the WBC count is up. I keep praying that you can be joyful in HOPE, patient in affliction and faithful in prayer(Romans 12:12) Please know that when you are weak, God is strong and that he is raising up a family of believers to carry your prayer and HOPE load. In tears, we carry your petitions to the throne of Grace...praising God that is approachable. Love ya,
Beejee
I read an article last week about how we live our lives. The author reminded readers that there is nothing that we can do about the past nor is there anything we can do about the future. We live our lives from moment to moment. Enjoy your beautiful daughter from moment to moment! I keep praying for all of you. My own children did not have much hair until they were nearly 2 years old. If she loses hers, at least you will know what a beautiful head of hair that she will have when it comes back. If she has to have a port put in, it is really a blessing in disquise. As I went through chemotherapy, I began to wish that I had had one put in. The veins in that arm are all still damaged. And she will not have to suffer having an iv put in each time. Hopefully, you will not have to deal with that and those blood counts will be down. All of you continue to be in my thoughts and prayers!
Ann Parow
Hey Emily,
Devon and I continue to keep you all in our prayers. As a side note, your spelling is acutally pretty good. Broviac is spelled right and vincristine is spelled with the "ine" on the end like I spelled it. And I think hydroxyurea is spelled like this.
I love all your hospital humor, thanks for displaying joy in this time.
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