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.The BigWig
Well we are FINALLY back from Hopkins (its almost 8). We left our house at 10 this morning. Had a nice lunch in Fells Point and then headed over to Johns Hopkins. We got all checked in, weighed and measured (which always makes me laugh when we just got those done 3 days ago...did she gain more than an ounce? is she suddenly 3 inches longer? what are we really measuring?). It was a bit more traumatic than gettine measured at Hershey since she didn't know the nurses. She cried and didn't like it at all but was a big trouper. Then we waited in the waiting room. After a bit we meet the Bigwigs Fellow (next step after a residency for doctors). She was very kind and knowledgable. She did the preliminary eval and got history. Then we went back out to the waiting area. After a bit the BigWig himself came out. Not what I expected at all. I thought "world renowned expert= stuffy, clinical, withdrawn. NOT AT ALL. He was so kind and friendly. He tried really hard to make Livi comfortable and she didn't cry. After he examined her we took her out the waiting area so my mom and Briana Almengore (who was kind enough to be our tour guide for the day) could walk her in her stroller while she took a nap and my dad, Bill and Cynthia could join James, the Bigwig and I in the conference room. He did a great job of explaining everything (all the kinds of leukemia, the different treatments and the rarity of what Alivia has) He said that this was probably there before she was even born. Not that she was sick then but that it was just waiting to happen. He said that Glevace might help her to keep her spleen but won't ever cure her and the only cure is transplant. He thinks we should do the transplant as soon as we can. The longer we wait the more chance that her lungs, heart or liver will start to be affected negatively and will make the tranplant even harder. The list of deadly things was overwhelming. Even getting the spleen removed could be deadly. The list of possible complications is overwhelming. She may have seizures from the chemo, it may lower her IQ forever, she probably won't grow as big as she would have, there will be a higher risk of developing other leukemias down the road, she will probably have fertility problems. The list of scary is long but the other option is she will definetly die from this disease. So in 4-8 weeks we wil be having a transplant. It will be at least 4-6 weeks in the hospital and her immune system will take up to a year to recover.
I am urging everyone who can to get registered to donate bone marrow. Go to marrow.org ASAP. We will try to get the bone marrow drive together but we might not have enough time to do it before she needs a transplant and we need to find the most perfect match. Maybe its you. Maybe you will get to save someone elses life. Or maybe you'll never even get called. but what if you get to save my babies life. Please sign up today.
We are heading to Hershey tomorrow for counts and maybe a transfusion. It would be nice to get to come home early but no expectations here.
Please pray for all of us. This is the scariest thing I have ever faced by about a million times. Pray for a perfect match, that the Glevace works and she won't have to have her spleen removed, that she makes it through all of this.
I'll write my thanks for today next time I post. Just can't write anymore now.
posted by Alivia's Momma @ 8:03 PM
23 Comments:
Emily-
Thank you so much for writing only moments after you got home from your longest day ever. I am so thankful that both you & James' parents were able to be with you guys today..& that you had someone like Brianna to show you around. I am thankful for the kindness that Dr "Big Wig" had towards you & Livi & I am so very thankful for all of his God-given knowledge. I'm sure it was good to have someone finally give you a few answers---even though they aren't exactly as you would've liked to hear. And most of all Emily, I am thankful for the strength that I see in you & James, because I know that it is coming from above & that same strength from above is what will continue to carry you as you begin the next step....
I love you so much!
-Ang
Emily, what a hard, hard day! Thanks for writing, we were waiting for news. We are praying fervently for your family!
Love & Prayers, The Kings
Emily, James and sweet Alivia,
I am so thankful that you have been given a plan today. So much comfort comes from a plan. Whether it is ideal or not. It is something to work toward. Something to focus on. A way to move ahead. So, for that I am thankful tonight. I am thankful also that God is keeping Alivia so strong through all of this and that he is keeping you both so strong as well. I am thankful that you made it safely to Hopkins and home today. I am thankful that you are surrounded by so many full of love for you. But, most of all I am thankful for you both, for the way you are blessing so many through your faith and grace, AND for the blessing of Alivia time and time again in your lives. Oh, the stories she will tell. Thank you!
Thanks for keeping us posted, even in the midst of your exhaustion and suffering. Well, we keep praying...and praying, and praying, and praying! I keep trying to think how I would be if this were happening to Jude. I break down just thinking about it, so I can't imagine really being you. Although I know that God gives specific grace for specific circumstances. I am amazed at His grace in your life. You don't pretend this is easy, but you wear His strength and His hope in a way I have not seen in many others. I truly admire you, Emily! We are here for you...
Julie (on behalf of the entire Garner clan)
Thank you for keeping us updated. I can't imagine how hard your day was today, but I pray you have a better day tommorow. I am praying for you guys.
Lots of love,
moriah
Glad i couldn't sleep so i could come read the update. I have been praying all day. I know this is not the best news. Please know that we will be praying and praying for that miracle that you and everyone else is hoping for. We know that God can do all things! And, we know that God hears the prayers of his people!
Love you,
Les
You and James are incredibly brave. I'm praying for her health, your peace of mind and that the situation ultimately brings positive results.
God bless,
Jeffrey.
Thanks for updating us even though you must be exhausted, especially, emotionally. We just ended a long day and Adalie called out from her bed, "Oh, I wanted to check Alivia's blog!" So we were grateful to know how it went. We've been praying for healing, for wisdom for the doctor's and for God's grace for you, James and all the family. Love, Gina
Hi Emily,
I also woke up thinking about Alivia and praying that God would heal her. I also pray that Jesus will give you and James His strength today.
Thank you for your message.
Margot
Emily, my husband Ben is interested in donating marrow (I would, but I'm pregnant til Feb. and by then, Lord willing, Alivia will be doing splendidly!)...the site said the only donor centers are in Philly or Pittsburgh, but is there anything going to happen at Alivia's hospital? Should we just purchase that kit thingy to mail back? Please let me know if you have a chance! You are constantly in our thoughts and prayers, specifically for complete healing for your precious little one! xoxo, Kelly Ross
Just read about your day! May today be a bit easier and I will pray that you are able to get home earlier. May the Lord's comfort be very evidnet these next few days as you have to digest all of the information that the doctor has told you guys. May you be reminded that "God" knew all of this and is not surprised by any news the doctors give. We will continue to pray for healing for Alivia!
God Bless,
The Freemans
i was really praying yesterday, and was eager to hear about your trip down there. I am amazed at how you rarely ever skip a day of posting, even though you could be sleeping with the time you spend on here. it takes effort to compose an update, but it blesses us so much because we long to know how to pray for you. thanks emily. These days i pray for rest and peace for you guys.
oh dear emily, what a day you had. it all weighs so heavy on me at times. the Lord really must be giving you grace to bear all of this. i'm praying and trying to trust Him to care for you in the deepest ways. much love xoxo
7 Where shall I go from your Spirit?
Or where shall I flee from your presence? 8 If I ascend to heaven, you are there! If I make my bed in Sheol, you are there! 9 If I take the wings of the morning and dwell in the uttermost parts of the sea, 10 even there your hand shall lead me, and your right hand shall hold me. 11 If I say, “Surely the darkness shall cover me, and the light about me be night,” 12 even the darkness is not dark to you; the night is bright as the day, for darkness is as light with you.
13 For you formed Alivia's inward parts; you knitted her together in her mother's womb. 14 I praise you, for she is fearfully and wonderfully made. Wonderful are your works; her soul knows it very well. 15 Alivia's frame was not hidden from you, when she was being made in secret, intricately woven in the depths of the earth. 16 Your eyes saw Alivia's unformed substance; in your book were written, every one of them, the days that were formed for her, when as yet there were none of them.
When the darkness threatens, may God shine His light and hold you close.
Emily-thank you so much for keeping us so well-informed! I was praying so much yesterday and checked the blog about 10 times between 6 and 8pm...I think I just missed this new post! I was so glad to see a new post when i came to work this morning. I'm rejoicing that God provided you with a caring and kind doctor and thankful for all the information he was able to give you. I will be praying for you today as well. I will be away this weekend, but please know you and your family will be on my mind and in my heart and I will be praying praying praying. Thanks again for the sacrifice you're making in maintaining this blog for the benefit of all who read it. You are an amazing and inspiring woman.
In Christ,
Laura Carroll
Thank you so much for the update Emily... and the quilt is on it's way... hopefully it will keep you warm and will remind you of how God CARES for you and underneath is His "everlasting arms" to keep you standing. God will "bind strength to the feeble". Remember "When I am afraid, I put my trust in you O God". WE don't know how He will heal; but remember that he ALWAYS cares.
Hi Emily
Joanne and Jeffrey and I are holding you guys up in prayer daily.Last night at 7:00 pm I walked into a grocery store near our home. It is not one that we usually go to. A woman ,who was a complete stranger to me, came up to me ans asked me if I'd heard anything about your trip to Johns Hopkins. Of course I had to ask the question--huh? Turns out she is a friend of Joannes from Women's Bible Study at Central Peninsula church in Foster City, CA and recognized me as Joannes' husband.She said that she and her family and her group at Womens' Bible Study pray for Alivia and you guys every day.Please let us know if there is something else we can do for you.
Love Uncle Mike and Aunt Joanne
Even though we are traveling, I have been trying to keep up with what is happening. I am so, so very sorry that you all have to go through this. I thought of you as I was listening to Elizabeth Edwards, yesterday. She has just written a biography in which she describes how she dealt with the sudden death of her son and cancer. She said that cancer was so much easier to cope with because she knew she had a chance, that she could fight. I thought of Alivia. She also has a chance to be cured and that is what we all must pray for. Thank God that medical treatments have progressed so that she has a chance for a cure.
Ann Parow
Hey kids,
I went to the local Central Blood Bank today to get info and will be heading back soon to do the actual deed of donating. One nice lady, I think her name was Rachel, took particular interest in my motive and she even walked with me to the parking lot as I gave a brief overview of Livi's plight. She was very caring and compassionate and said that her hopes were that Livi would not have to go through treatment, but that she would keep Livi in her prayers. Just wanted to share that with you.
Love, Grande Aunt Lisa
Emily -
Praying, praying, praying for your family. Remember that your securtiy in Christ can never be shaken, nothing seperates you from His love.
- Bre
It was good to be together in Baltimore...I believe we are all somewhat resigned to the "next step"; however, we could not have even gotten this far without God's grace. Though once we enter that hospital for an extended stay...well, there will be grace for that too, I know. Thanks to everyone who prays, and blogs and gives in whatever way. We could not do this without you. Gigi
P.S. Bri, you were a breath of fresh air for all of us today...thank you in so many ways...especially the insight of having walked this way before. I love my family, they are all being troopers in this...Dave, Emily, James, Liv, Andrew, Cynthia and BIll, Aaron, etc. etc. Thank you
Em,
I love you! Thats all I know to say right now! I'm getting right off of here and signing up!
Love Shannon
I heard about what has been happening through Sara Rankin's blog. You guys will be in our prayers and we hope for the best in this situation!
The Nobles in Alaska
Post a Comment
Subscribe to Post Comments [Atom]
<< Home