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 +6
Today was not our best day yet. Alivia was throwing up on and off all day. When she wasn't throwing up she was her normal self or maybe even a little extra hyper. They stopped one of her meds cause it was making her poop too much which is a bit of a relief for her little bottom. But each time she throws up she poops too so we are constantly trying to keep her in a clean diaper. We are now giving her Fenergin (I think thats how its spelled but who cares) every 6 hours to keep the nausea at bay. This med knocks her out too so she was pretty sleepy this evening. Also she is showing some signs of mucusitious. Her tongue looks a little different. Not bad but like things might be starting.
We also spent the day picking hair off of everything. It is coming out by the handfull. It is so sad to watch. She doens't seem to mind but I love her hair and am really having a hard time (now is not really the time to tell me it will grow back...i know this but I still need to mourn another thing that is not what I expected when I became a mom) right now it is mainly the back that if coming out. So it sort of looks like she gave herself a really bad haircut (from the front) and just very thin from the back. Here are a few photos....
This is yesterday before the hair started to go.
About noon...starting to thin
Hard to really tell but all the long peices are gone and the shorter hairs remain.
Today was a hard day in this whole hallway. One of the families we've gotten to know this time around has a little boy who is 2 and 1/2. Today he was pretty sick, spiked a fever and got a bad rash. Another girl (about 15) at the end of the hall coded today. It was very tense and scary for a while. She is now stable but in intensive care. Our nurse was also caring for her and had a really rough afternoon. It is so hard to know that someone just a few doors down with the same disease as my baby almost died today. Just a reminder how bad this disease is and how scary it can be.
Please pray for all the families here right now. This is a hard place to be. There are some kids sicker than Alivia here and regardless of the stage or type of leukemia it is a terrifying, horrible disease. Being a parent of a child with a life threatening disease is draining to say the least. It is constantly on my mind, constantly in my heart. I dream about it and live it every day. Pray for a better day tomorrow. Pray that she will continue to be fever free and that the mucusitious will remain where it is or go away completely. Pray that her bottom heals and that she won't be so nauseas. Pray that this transplant is 100% successful and that she is completely healed of leukemia. Pray that she never develops a secondary leukimia down the road. Pray for good dreams for Alivia....it seems like she has quite a few bad dreams and cries out or says "no" in her sleep. It would be nice for her to have peaceful nights.
Thanks to....
the following people for cards...
Andrew (she liked the song and now says "drew" when she sees your photo)
Owen (boy if you get any cuter we are all in trouble!! Thanks for the frog Tina)
Phyllis Miller (good to have a face to go with the blog comments. Thanks)
Lori Carabello
Mamaux and Nick (that's for filling out the family tree info and the birthday card and present)
Also thanks to the TI (and Annette) for the great gift basket. I love it. We will probably use all the anti-bacterial stuff before we leave here and the nurses were all a little jealous..you can only stand so much purell and the alcohol smell)
posted by Alivia's Momma @ 10:53 PM
35 Comments:
Glad I checked your site one last time before I headed to bed. Thanks for faithfully updating. Tonight I sat here and shed some tears. My heart is aching for you, Emily! I'm praying. That sounds so meaningless at some point...until you remember who our God is! Don't forget it! :)
Love you!
Julie
Emily and James,
I haven fallen deeply in love with your sweet little girl. I am praying for Alivia. I am praying for you both.
Much love.
Sara (Ang's Sister)
Praying for healing for Alivia and strength for all of you as we read the blog faithfully everyday (ok, I check it several times a day). It must be SO hard and yet, our God is good. Thanks for giving specific prayer requests. Love, Gina
Still lifting up your family in prayer every day!
Kristen E.
Dear Emily,
I just thought you might like to hear something sweet that happened today. My children and I pray for Livi and your family several times a day, and especially my 7 year old son ALWAYS makes sure we pray for her. Well, tonight he came in from our computer with a huge smile on his face and said, "Mom, you just have to see this!" He was reading all your blogs about Livi and looking at the pictures, and he'd figured out how to make her face fill the whole computer screen. He was just beaming at how cute she is! He did this about five times with different pictures of her-- one time he even filled the screen with her sweet little hands clasped as she was sleeping. Just to let you know your little girl is dearly loved, even by seven year old boys who've never met her! She brings joy to so many. I know the Lord is honored by having SO many crying out to Him to heal your little sweetie. Love, Elizabeth in Salunga
Phenergan...
Praying for ya all.
Kristine
Emily, I read your last post this morning and you have been on my heart all day. I've been praying that Jesus would comfort YOUR heart and bring you peace. Now I read this and I will be praying all the more. Jesus is faithful! The little ones in my Sunday School class love to pray for Alivia. You have a special little girl!
Elisabeth in California
Emily thanks for sharing your heart. You are doing an awesome job. I pray that you have a better day today than yesterday.
Jeff and I just sat here feeling for you. I know it must be so hard to do what you are doing. I am so proud of how you handle everything. I know that it is so difficult, but you always have the energy for all that is placed before you; a testimony to the goodness and grace of our God. We are always praying and thinking of you.
Love, Les and Jeff
ps- and I would be sad if my baby's hair fell out too. Go ahead and mourn it.
Praying - hoping that today is an easier one.
Cathy S.
Emily-
as i read your entry my heart continues to cry out- heal her Lord, make this transplant work and may she not have a relapse, heal her little bottom, and that God would be bigger every day as you continue to live and walk this unexpected journey, may his mercies of sleep rest your bodies for another day of serving and that alivia may have restful sleep. may you be strengthen today by His grace. we love you and continue to be praying.-love you-jamie
Emily,
You dont know me, but I have been following your blog faithfully and praying for Alivia and your family. I just wanted to let you know that while it wasnt my child going through what Alivia is, it was my mom who had Non-Hodgkins Lymphoma 2 1/2 years ago. She was diagnosed with Stage 4 Grade 3 very aggressive lymphoma, went through chemo, and came out in complete remission. It was very hard for her and the family, but I have been sharing your story with her, and she said just the other day that the whole experience almost seems like it never happened now, almost like a dream, so I just wanted to let you know that while this probably feels like you are living a nightmare, someday this will all be just a distant memory, and Alivia will probably never remember any of this experience. You are an incredible mom, Alivia is so blessed to have you as her angel, and just try to take one day at a time, this too shall pass.
Jesus, we pray that you would be with Emily and James, and sweet little Livi! We ask that peace would fill their room and more importantly, their hearts! We trust you and know that you are with them every step! And please please send your angels to be with livi, may she know you are with her!
"Though all around my soul gives way, He then is all my hope and stay.
On Christ the Solid Rock I stand all other ground is sinking sand -all other ground is sinking sand."
Tom Bueche
Emily and James, Our hearts goes out to you and our prayers go up God for you!
Your precious Alivia is being talked about and and prayed for so many ways and places...And we will continue to do so!
Your strength is amazing! You say thank you to so many people, but we should be thanking you for showing us how faith can carry us through the toughest of times. You are an example of how we all should be! AND...thank you for keeping us all up to date on Alivia! Boy is she just the cutest!!!
Love, Jessica Bennett and Tye Denney
Oh Emily, I am crying as I read your post. My heart breaks for your pain. And I COMPLETELY understand you being sad about her losing her hair. I could tell how much was missing from that picture and I felt so sad. I would feel the same way. I truly feel pain for the families around you and will include them in my prayers as well. I will continue to pray for sweet Livi everyday and for you and James. You are a wonderful mom and Livi is so lucky to have you beside her on this difficult journey. My heart and prayers are with you.
Vicki Moore
I'm already crying all the time here. I read the blog and cry some more, esp. today's post about her hair. You saw the pictures of Bella w/ all her hair. When she was in the NICU, a nurse said she might have to shave her head to get an IV line in. She ended up not having to do that, but the thought of it broke my heart. I can imagine how difficult it is to watch Livi's fall out. I'm sure it makes all of this even more real to you (as if you weren't all too aware of your reality as is).
Jesus wept w/ Mary and Martha at the loss of their brother. I know Jesus is weeping with you, too, over the loss of Livi's hair and the life you thought you'd live. There is loss in all this, but God promises that all this loss will bring much gain in the end.
I love you much and am praying for the entire floor today.
Oh, Emily!
What a day!
I've been sick and I've stood by loved ones who are sick and the "standing by" part is harder by far! And if it wasn't enough to see your own precious baby sick, you are right in the middle of other kids who are seriously ill!
Yet, you continue to bless us, allowing us to see the faith and strength that the Lord is giving you. Yes, you do have that faith and strength even when it doesn't FEEL like you do!
When I was loosing my hair, I couldn't take it anymore and asked a very good friend of mine (a stylist) to come over and just buzz it! (I'm NOT suggesting you do that...I'm going to make a point here.) She did, and for me, it was sort of a relief. She is a really "up" type of person, very bubbly. I didn't find out until months later...and I didn't notice at the time...but she cried the whole time she was cutting my hair! And so, we feel for you today, too.
I also remember when a good friend of mine, who is younger than me had a stroke AND a bout with breast cancer. One day she called me and told me she lost her hair; she just had to call me to tell me. What do you say? I mean, what can you say?!
I was looking through the posted comments this morning and it seems like you have almost 'round the clock prayers being said! How about that? That is so good to know! Prayers for Livi are being carried to the throne all through the day and night!
I pray that today is a better day for Livi and all of you and that God continues to heal her completely.
Sorry for the long comment. Your post really tugged at my heart.
Still praying!
Mary Ann K.
Thank you for keeping us all updated. You are going through so much, but you still tell us all whats going on. I am sorry you have to watch livi's hair fall out, but remember God wanted it to happen. Your faith in God, is such an example to me. Thank you! I pray that livi won't keep throwing up so much, and that her little butt will start feeling better. Keep trusting God!:):)
love,
moriah
I can't even imagine how hard this trial must be, but it is obvious the Lord is giving you much grace and caring you through this trial. I am grateful that Livi is too young to understand what all this means, and probably won't remember any of this.
I am grateful that you have this blog for her to read when she gets older. She will learn that her parents and grandparents are heroes of the faith and that she has an entire army behind her, praying for her daily.
It is so good to look at the pictures of Livi and see that beautiful smile on her face. Even when she doesn't feel good it seems she smiles. What a gift from God she is.
Praying daily. Vicki G.
Emily,
you have such a beautiful little girl. I think about you every day.
Tracie(Heather's sis)
So sorry to see that Alivia's hair is falling out. Please remember it is only temporary, but her beauty still shines through.
I am so proud of all of you, your strenght and love is amazing.
We are glad the box of goodies will help entertain Alivia. As a mother of two girls and a grandmother of a 19mth old (ie. the 2nd cutiest baby around), I know how difficult keeping them entertained can be.
I continue to pray and think of you often during the day.
With Love and Prayers,
Chris Troutman
Dear Emily, I am so sorry about her hair. Like most everyone else on the blog, I cried too. I will be praying for all your requests, especially for peace in the night for Alivia. Love, Janet
We are going to be praying for you this morning... thanks so much for faithfully letting us know how! It is great to know specifically what to bring before our God. I also just want to let you know how much I appreciate your honesty through all of this... you expose your heart for all to see and I know that the Lord will continue to pour out His Grace on you and your family. Thank you for allowing us to see God at work in your life... it points us to Him!
Blessings,
Rochelle Calvetti
DEAREST EMILY- JAMES- "ALIVIA"- AND THE MOST LOVING GRANDPARENTS IN ALL THE WORLD--
YOU ARE IN MY HEART AND I AM PRAYING-FOR YOUR REQUESTS..
THE GIRLS (WORKING WITH ME) ARE VERY CONCERNED AND THEY COME INTO MY LITTLE CUBBIE( MINI OFFICE) TO SHARE THEIR THOUGHTS.. ALL I CAN SAY TO THEM IS PRAY ----YOU ARE BEING THOUGHT ABOUT ALWAYS !
PRAYING
Phyllis
Hey Emily-
I'm sorry that your day was so difficult yesterday.... I wish I could hug you....tears & prayers on your behalf..-Ang
Wanted to let you know I'll be praying for Alivia and that I'm daily checking your posts.
continuing to pray... miss you and love you ...
beth
also...
"The Lord is faithful in all his words and kind in all his works." Psalm 145:13
Nan just left, she was brave to drive here in this snow. But as she said "I had to see Livi!" I do question why this happened to Livi and each child on this wing. I will never know why. I don't need to kow why, it wouldn't make it any easier. God's word (Jesus) states he only does good to us. I must rest on that! I run to that, even through tears. I love you Emily. MOM
Aww, praying for the whole floor and for Alivia.
I was so sad for all of you today when I read your last post. I am filled with so much sorrow for little Livi! I see her pictures and see my little girls in her face.
"Jesus, I pray that you fill this little girls body with ALL she needs to fight this disease. I pray that her parents will be continuously surrounded by the most loving and patient of medical staff. I know you hold little Livi in your precious arms, but Lord please heal her body and let her rest soundly so that her body can be as strong as it needs to be. Lord you are a loving God, and Livi needs your healing hand to guide her. I pray all of this in your Wonderful name Lord!"
I truly mean it when I say I AM thinking about all of you and praying for you often.
Love, Your Canadian Friend Carmen
Praying for you all.
psalm 34:17-19
"When the righteous cry for help, the Lord hears and delivers them out of all their troubles. The Lord is near to the brokenhearted
and saves the crushed in spirit.
Many are the afflictions of the righteous, but the Lord delivers him out of them all."
I'm so sorry that her hair is falling out, sweetie. How painful that must be for you. I love the way you said what every mom of every little girl feels, "I love her hair." It's just the way it is for us moms. When we have our little girls, we love their hair. We love to play with it, comb it put it in pony tails and just fix it. As it gets longer, it just reminds us of the incredible delight having a daughter is for us. My prayer for you is that He will comfort you in this loss. Even tho we know it will grow back, it doesn't make its loss now any easier or less painful for you. So my prayer is that He will ease your pain as He heals Alivia. I can't imagine what it must be like for you and your family. I'm so grateful that you know the only One who can.
We love you. We pray.
kristi
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