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.Another day
So I definetly didn't expect today. I shouldn't have expectations but I do...oh I'm human and thats what we do. Anyway, James and I prayed about it and decided that I should take Livi to Hershey for her blood work cause she has to port now and the arm sticks are so traumatic for all involved. So we got there around 9:30 and it was pretty quick getting the port accessed the blood sent off to the lab. Then Alivia and I went to the park behind the hospital and meet up with Kathy, Xander and Bryn. What a nice distraction. I gave the nurses my cell number so they could call when the results came in. Her white cell went back up to 34 and her platelettes came down to 30. Not what we were hopeing for and yet not the real hard news of the day. So I went back to the office to get the access out (no transfusion till next week) and the doc was on the phone and wanted to talk. Well he had talked to the doc at Hopkins (the bigwig) and after reviewing her slids that doc is sure that this is going to turn into ALL. Funny for a while that news would have made me happy till I saw what a kid with ALL looks like and realized that NO leukemia is a "good" leukemia. That is the kind that takes about 3 years of treatment. He also told me that if you are diagnosed under 12 months it is a much worse prognosis and after 12 months it is better. Well she is right on the line so they would act as if she was under 12 months and go after it with a lot stronger doses of the medicines. Vincristine and steriods would be the first things she would get. So I guess now we just sit and wait for the bomb to go off, or at least that is what it feels like. We will have another bone marrow biopsy in 3 or 4 weeks and weekly visits until then. Also we will continue with the hydroxeuria.
pray for...
...healing for Alivia
...patience and peace for us.
thanks to...
...kathy for coming to visit
...the garners for the panera gift card (yummy can't wait)
...LOLC 3rd and 4th grade sunday school class for your sweet letters.
posted by Alivia's Momma @ 3:48 PM
15 Comments:
Emily and James,
I will be praying for you both and Alivia. I'm so sorry for the news you received. My heart began to hurt when I read your blog entry today. But, I am encouraged by how you both continue to walk through this trial -- with trust in our Sovereign Heavenly Father.
Praying,
Lori Randolph
E & J,
Me again...As I've been working, I've been listening to some worship music, and I felt impressed, in light of your recent news, to encourage you with the lyrics of a song we sang a church a few Sundays ago. I pray these lyrics will in encourage your hearts and souls and build your faith.
WE FOLLOW THEE
Verse 1:
Through good report and evil,Lord, Still guided by Thy faithful Word,
Our staff, our buckler and our sword,
We follow Thee
Yes we follow Thee
Jesus, Follow Thee!
Verse 2:
By grace we strain to forward go,
’Mid smile or scoff or friend or foe,
Through pain or ease, through joy or woe,
We follow Thee
Yes we follow Thee
Jesus, Follow Thee!
Bridge:
We follow Thee
Wher - e’er You Lead
No matter where You may take us
For You are faithful, Lord Jesus
Verse 3:
With enemies on every side,
We lean on Thee, the Crucified;
Forsaking all on earth beside,
We follow Thee
Yes we follow Thee
Jesus, Follow Thee!
Verse 4:
Whom have we in heav’n above, Whom on this earth, save Thee, to love?
Still in Thy light we onward move;
We follow Thee
Yes we follow Thee
Jesus, Follow Thee!
Bridge:
We follow Thee
Wher - e’er You Lead
No matter where You may take us
For You are faithful, Lord Jesus
Honey, we are here aching and praying for Livi and you and James. Gigi and Pap
We love you, we love you, we love you....
I'm praying all the time for you all. Love you all so much...
Beth
Praying for healing - praying for patience and peace. I'm glad you had a time of refreshment with your family before you had to face this news....Praying for blessings for all of you.
Cathy S.
Sorry I missed your call. Hopefully we can connect tomorrow, not only to do the clothes exchange, but to talk. Sorry about this sad news. When April told me, my hear just sank. I am always praying for her healing. And, I know that expectations can be devastating, but you are also her mom. You have to hope the best for your baby. That is beautiful and at the same time heartbreaking. Praying for grace for your heart! Know that you are loved and prayed for!!!
Love, Les
Emily:
Your strength is amazing. I know that you may feel like you are struggling, but just the fact that you can get on here and thank people day after day shows your presence of mind and faith in God.
I wish I was there to take you to lunch and share with you, but just rest assured that God has shown me that He is with us still and is still a God of miracles.
I keep hearing the song my oldest daughter sang at Performing Arts Camp at church earlier this month..I shared the part I still hear in my head with a friend earlier today, but will have to look up the song to get all the lyrics. It is about the wise man who built his house on the rock instead of on shifting sand (the parable)....
"On this solid rock I stand...all other ground is sinking sand....all other ground is sinking sand."
Jesus will see you through this storm and it is clear that you and James have built your house on the rock.
This earthly life is really nothing more than one big storm for all of us. We just sometimes have enough good days in a row that we convince ourselves otherwise.
I am praying for a miracle and for Jesus to calm your storm.
Love to you, James and little Livi....
Love,
Caroline
Here are the Lyrics..I found them:
My life is built on nothing less
Than Jesus' blood and righteousness
I dare not trust the sweetest frame
But wholly lean on Jesus' name
On Christ the Solid Rock I stand
All other ground is sinking sand
Whoa-oh The Solid Rock
All other ground is sinking sand
When darkness veils his lovely face
I rest on His unchanging grace
In every high and stormy gale
My anchor hold within the veil
On Christ the Solid Rock I stand
All other ground is sinking sand
All other ground is sinking sand
Whoa-oh The Solid Rock
On Christ the Rock I stand
Whoa-oh, the Solid Rock
All other ground is sinking sand
My hope is built on nothing less than Jesus' blood and righteousness
When he shall come with trumpet sound
O may I then in Him be found
Dressed in His righteousness alone
Faultless to stand before the throne
On Christ the Solid Rock I stand
All other ground is sinking sand
All other ground is sinking sand
Love,
Caroline
Dear Jesus,
Please send your strength to Emily, James, and most of all Alivia. PLEASE heal Alivia's body-we know you can.
Love,
Margot
i am praying constantly. i pray that that miracle we all have been praying so hard for will come soon. have a wonderful weekend.
love ya,
moriah
James and Emily,
We are still praying for you all and admire your strength through this. Keep looking up, you're doing great.
Mike and Leigh Dowgiewicz
Emily, We are praying for "Baby Livi" as Autumn always calls her. We pray for strength & peace for you and James. Thanks for writing all the time, so we can cry, laugh & pray with you guys!
Love, Brandi & family
i am praying!! hope to see you tomorrow!
Christi
Yes, we stand on Christ, the Solid Rock. All other ground is sinking sand. We think it's not when the sun is shining and the sand feels soft on our feet and it is a beautiful day. But a storm is coming for all of us. In a strange sort of backwards way, it is a blessing to experience a storm sooner rather than later because we become prepared, secured and confident in the strength of the Rock. We get to know it intimately and then we own it forever. Anyone who hasn't been in a storm, will be. Either now or later. Much better now than later. God, in your mercy you have brought this storm. Nothing feels right, everything feels wrong. But, our hope is not built on our standards of what is right or wrong. Our hope is built on nothing less than Jesus and his righteousnes! We dare not trust the sweetest frame...and there is none sweeter than Alivia, and our hearts are breaking to think any harm would dare come to her. We cannot stop stop the storm and we certainly can't get even a foothold in the sand! There is nothing solid in our world, nothing we can count on. Can't count on numbers, doctors, health or life. Nowhere to stand except on the solid Rock of ages. May you James, Emily and Livi, find your comfort and refuge there. Amen.
Aunt Marcy
Love you guys.
James & Em,
We were sad to read your news. We stand behind you and continue to lift your little girl up in our prayers. (and both of you too!) We can't even begin to imagine what you are going through right now.
Much love,
Dan & Julie
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