Boundless Love

"Oh Lord, hear my prayer, listen to my cry for mercy; in Your faithfulness and righteousness come to my relief." 

Psalm 143:1

There is no greater love than the love of The Father. His love knows no bounds or conditions. It is freely given and never forced. It is never taken away, dwindled down, or restricted. His love is so deep that He would allow you pain in order to save your soul. No matter the cost He would continue to give it. 

During our prayer time for Shannon today Margy Dargis said about us, "let them know that You Lord understand their suffering. While Shannon is screaming and inconsolable remind them of Your son on the cross." What a powerful reminder and one that I will need quite often. There is no greater love, no greater gift, than the love of the Father. He loves so deeply that He listened and watched as His son suffered, agonize and die so that we might live. 

As I listened to Shannon scream my heart literally began to ache. It hurt. I hurt. I got angry, sad, frustrated, hopeless, and felt defeated. What must have the Father of all creation felt as He let His son walk through the greatest trial that ever was? 

Tomorrow is day +1. The first full day of Shannon's new life. We are one day closer to going home. One day closer to being reunited as a family, to being reunited with the body of Christ that we love with a deeper love today than we ever have. Seriously, I cannot wait for that day. The day we stand on stage at church and dedicate our daughter to the Lord. On that day the celebration in our hearts and in heaven will be grand. Shannon belongs to the Lord. She always has. His love for her knows no bounds. His love for her existed before her first breath and it will be for eternity. 

Father of Light and of Love we ask for Your glory Lord be gracious. Let your countenance shine on us. Let the light of Your face be upon our daughter in her hour of need. For Your names sake Father let the miraculous be part of Shannon's story. You already have blessed her with health prior to hospitalization and a quick diagnosis. You are the Divine Physician and we plead with You to shower a miracle over Shannon's body. We ask for a beacon of light to shine from Shannon's room and for an amazing story to rage throughout this unit. That each family and each child here would hear the story of Shannon Hope. The story of a little girl that was touched by and miraculously healed by a mighty God. Let her be a vessel of hope for so many children fighting. Lord we live only to see Your face shine on us. To be Your hands and Your feet and Your light to a world full of pain and suffering. Father Your love knows no bounds and for that we are grateful. We praise Your name and ask in the name of Your son Jesus, and there is power in His name, that You would restore Shannon's body tonight and each day forth. 

In Jesus Name. Amen

A Barren Wasteland

"Would you dance with me O'Lover of my soul? 

To the song of all songs."

Walking through chemotherapy looks like a barren waste land. I can only imagine what it would feel like as it rages inside you. The body begins to look like a land in severe drought; dry, cracked, withering, aching, and moaning for water. 

Shannon is in this barren waste land, and we cry out for rain. Heavenly, life-giving rain. We request daily, along with thousands of others, for Holy rain to come like a thirst quenching flood that will fill every cell and restore her like a garden in full bloom at the beginning of spring. 

As she enters into her last 2 days of chemo I picture the Lord dancing with her as He restores her body. He is after all, the lover of her soul. I see Him holding her precious body in His strong arms and raising her up to dance above the pain. Above the side effects, allergic reactions, and painful certainties. I don't know when this healing water will come, when we will see an end to her drought. Until then I ask the Lord to dance with her. To carry her above suffering. 

My amazing husband gently reminded me tonight that my prayers are "requests, not demands." So, I plead with an aching spirit that the lover of her soul would dance with her to the song of all songs...our prayers, our groanings, our pleading and our praising. Such a beautiful song of love that goes out to the Creator for our daughter from so many faithful loving people. Calling out to The Father, Abba, the one who provides according to His own riches and glory. 

He is worthy of praise even in pain. Especially in times of drought. And we are desperate for Him. We need Him to fill Shannon's barren waste land of a body with life. We need Him to consume her in a downpour and to dance with her while He gives her a new life.

"See the Lord...powerful and strong...like a driving rain and a flooding downpour, He will throw it forcefully to the ground...that fading flower, his glorious beauty, set on the head of a fertile valley...in that day the Lord Almighty will be a glorious crown, a beautiful wreath for the remnant of His people..." Isaiah 28:2-5

 http://www.youtube.com/watch?v=aZ3w2KZx3FM

Walking Through Water

I'm holding Shannon standing at the edge of sand where water begins and staring at a vast ocean. Behind us is death. Before us is uncertainty. Turning back is not an option. Facing fear is an absolute. I can imagine the Israelites fleeing Egypt and standing at the beginning of the ocean looking at Moses. Behind them is certain death, but before them is intense uncertainty. They had to walk between walls of water along the ocean floor because turning back wasn't an option for them either. As Moses parted the waters they must have been terrified wondering, "should we trust this guy?" I know I would have.

That is how I feel when the doctors and nurses bring in the chemo drugs every 6 hours. Then the Holy Spirit reminds me that I must trust God, not man. The people of Israel didn't trust Moses, they trusted God in Moses and they had to. We have to. Behind Shannon is death just like Egypt was death to Israel. Yes, God could heal Shannon, but He is asking us to walk through water instead. 

The walls of water are high and raging. Inside them is uncertainty because we have no idea how long the road is or how long it will take to complete the journey. Walking through the walls of water I see on right and left endless treatments, side effects, complications, pain, suffering...but I have to trust God to not let them crash around our daughter. We have to keep our eyes fixed on Him. He didn't let them crash over Israel and He won't let them crash around Shannon. But, He did let those waves crash over death and we are trusting Him to do the same for our baby.

So we continue to walk through water. Daily trusting God that He will keep the waters parted. We keep our eyes on the sunlight ahead, the days of Shannon's life, the joy, the health and the life. The life that God planned for her. I believe with every cell in my body that while Shannon's days are numbered like all others, the numbers are many and the days blessed. 

The doctors have their facts and time lines that tell you exactly when pain and reactions will start. They say for 26 or more days Shannon's body will be riddled with open lesions and sores throughout her mouth, intestines, and rectum. They say she will bleed through her rectum and have second degree burns on her vagina and bottom from bleeding and diarrhea as she expels dead cells. They say she will swell with at least a pound of water weight. They say she will vomit and not eat. They say her skin will develop painful rashes. They say seizures, low potassium, blood transfusions and a pain pump are a certainty. During this process Shannon will be on a total of 3 antibiotics, 1 anti viral, 1 immune system suppressor, 3 chemo drugs, 5 medicines to keep her body from fighting back against the chemo, 2 medicines for pain, 1 anti fungal, 2 medicines for mouth care, IV fluids, IVIG, 2 anti-nausea meds and another to keep her bowels moving. 

Her transplant program lays out 8 days of chemotherapy including 3 days of the major heavy hitter called ATG. This drug will wipe out her marrow taking her white blood cell count to zero. That's right. She will have absolutely no way to fight infection. 

Then after 8 days of treatment, on Monday, November 21, Shannon will receive a cord blood infusion. A bag of life giving blood will be brought in to her room and hung on her IV pole. They explain that while you would think that this would be the beginning of the end it's actually the opposite. The hell I described above should start the following day for up to 30 days. 

Yes, the waters rage, but by His mercies we are not consumed. We are walking through this because God demands it of us. This is His choice and His ways are not mine. His knowledge is greater. His ways are greater. 

One foot in front of the other. 

A Song for Shannon

Dear Shannon,

Afraid to love
Something that could break
Could I move on
If you were torn away?
And I'm so close to what I can't control
I can't give you half my heart
And pray He makes you whole

You're gonna have all of me 
You're gonna have all of me
'Cause you're worth every falling tear
You're worth facing any fear
You're gonna know all my love
Even if it's not enough
Enough to mend our broken hearts
But giving you all of me is where I'll start

I won't let sadness steal you from my arms
I won't let pain keep you from my heart
I'll trade the fear of all that I could lose
For every moment I share with you

Heaven brought you to this moment, it's too wonderful to speak
You're worth all of me, you're worth all of me
So let me recklessly love you, even if I bleed
You're worth all of me, you're worth all of me

We love you Shannon. You are worth all of us. 

Love,

Mommy

King of Glory

"But, o my soul, don't be discouraged. Don't be upset. Expect God to ACT! For I know that I shall agan have plenty of reason to praise Him for ALL that He will do. He is my help! He is my God!" Psalm 42:11

You know those moments that make you think that it's foolish to hope? Those times when you think that if one more thing doesn't go right you are going to crack? Well, this past week was full of those. Those moments when your heart feels like it's literally breaking. Those times when don't think you can weep anymore. 

"It's NOT fair!" I actually said that this week. As if it were fair that any of the these kids suffer. It's so hard to reconcile my knowledge of my loving Father in heaven, El Roi - My God Who Sees Me; El Hakkavod - The God of Glory; El malei Rachamim - All Merciful God; with the fact that my child is suffering. And, according to the doctors on her team, she will continue to suffer. 

This week Shannon was connected to oxygen and having a very hard time breathing. Her swelling is so bad post blood transfusion that she put on a 1lb of water weight and her skin is pulled so tight that it glistens. She cried whenever she was awake. She has had 5 IV's in the last 4 days and her arms and hands look like balloon's. And it was in the thick of this that her doctor's said, "Well it's going to get worse. Compared to what she will look like, this is actually good." What?!!??! Are you serious?!!? That's what they have to say. They are leaving her in this condition because it's only going to get worse and they need to save all their intervention for the "worst of it". What is the worst of it?...Chemotherapy.

Chemotherapy is ugly. It's big. It's bad. It destroys. It devours. It wipes out whatever it touches. There isn't anything pretty about it. The 13 year old girl next door to Shannon will have a year of it. She just had her birthday on Saturday. I took my daughter Teagan in to deliver her birthday presents. She hurts. She knows why. But how do you explain this to a 2 month old baby? But, then again, understanding sure doesn't help our sweet Sara next door. Either way it sucks. Period.

I was listening today to a song called King of Glory. The song says, "King of Glory, Have your Glory. King of Glory, Have your Glory Lord." Each moment I hope that He will have His glory with Shannon. That He will touch her body or breathe over her body and create in her a new healthy life. I ache at the thought of watching her go through chemo. Watching her go through the next 72 hours of more IV's, a PICC line surgery, blood draws, and another Central Line chest surgery. Then it's on to chemo a time which I am told Shannon will experience the worst skin breakdown diaper rash from cells exiting her body through waste, nausea, vomiting, mouth sores like ulcers, open sores and skin shedding down her throat and throughout her intestines, water retention and severe swelling, pain, and as the doctors said, "You will watch her deteriorate before your eyes." 

So like I said, it's hard to reconcile our awesome generous merciful God with suffering, but that is my weak human nature. Even in all this and through all this I know one very clear and perfect truth. Our God is a God of goodness, compassion, mercy and power. He has never left us. He has never left Shannon. He isn't doing this to Shannon or to us. He has never forsaken us. He is Immanuel, God with Us, and He WILL have His glory. 

Soon. Some day very soon. We will have a big party and celebrate Shannon's coming home. I can't wait. Pray with us that chemo is not what "they" expect. Pray with us that we can be a light in a dark place. Praise the Lord with us because He is Good All the time. He promises. :)

Privilege & Trials

Wow what a morning. Shannon struggled most of last night. Unable to sleep, swollen, and needing constant oxygen. This morning the blood cultures from yesterday showed a still active Staph infection. So, this morning the news that chest line must come out. Major bummer! 

They did a chest xray this morning which showed an active infection in her chest. Please pray for the antibiotics to attack the infection in a way that Shannon's immune system cannot. I pray to see a complete turn around by tomorrow morning. 

After the chest xray came the bedside extraction. The OR operates on their own time so they gave us less than 10 minutes to get he morphine in her and fed so she didn't scream the entire time. Shannon did very well during the extraction. She has an open whole in her chest which is covered with bandages but is still a risk for infection so please pray against any other damage! 

After the extraction came IV Team, blood cultures and blood draws. Shannon did very well and was relaxed from pain meds. The IV Team did amazing and got a line in the first try!! This has never happened before. We are praying this IV lasts longer than normal and that Shannon not need more than 1 additional IV before surgery for a new chest line on Monday. This surgery is tentative because the infection must clear first. By the name of Lord from whom all blessings flow we pray over our daughter that this infection clear in Jesus name! 

Please pray for peace and rest for our sweet girl. Our family is emotionally and physically exhausted...including grandma! But we are blessed to care for such an amazing gift named Shannon Hope. We have no fear of bad news and we look forward to the Lord's healing of our precious girl. 
Thank you again to all those supplying finances, meals and prayers for our family. We are lifted up by your generosity making each day just a bit more tolerable.

God is bigger and better than any disease but He does not promise life without suffering. We count it a blessing to triumph during this trial, but we are in constant need of His peace which He is faithful to give.

"Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we not stand. And we boast in the hope of the glory of God. Not only so, but we also glory in our SUFFERINGS, because we know that suffering produces perseverance; perseverance, character; and character, HOPE. And hope does not put us to shame because God's love has been poured out into our hearts through the Holy Spirit, who has been given to us." Romans 5:1-5

Antibiotic Overload

Knowing when to push and when to wait. It's a fine balance. Entering the hospital you are told that you are your child's advocate, but once you are in here you find that there is little in your control. Your job is to comfort, to pray, and yes, sometimes to push...but most of the time you wait. 

When I thought of children in the hospital prior to this experience I always assumed that when they are sick they get help and they get it fast. Now that I have lived here for a month my eyes have been opened to a new reality. A reality where children wait for insurance approvals and beuqacratic red tape to be removed before they get the life saving procedures that they so desperately need. I've seen insurance companies cut coverage because the child has been told by doctor's, "there is nothing more that we can do." I've seen a child sent home without any way to get him home safely with the oxygen he needs. I've seen parents have to raise $10,000 just to get their child home to die and be comfortable on the ride home. When did children become an insurance policy number? When did following policy and procedure become the priority over saving a child's life and giving them the dignity they deserve?

It's ugly, but it's true. Shannon needs a bone marrow transplant. She was strong and ready for chemo last week, but medicaid needed to "process and review" her case before approving her procedure. So while Shannon waited she developed a Staph infection. Every bone in my body went into action. I couldn't believe that insurance was what had held up the procedure to save her life. I asked her HemOnc team nicely to please expedite the process and call medicaid. I was told, "there are people on the other end of the phone and if we push I have seen them push back and take longer." I wanted to throw up! 

That night I went over and over in my head how I would ask the team to move forward with urgency, but every time I thought of my speech I would lose my peace. God clearly spoke to back down and let Him move. The next morning during rounds Shannon's team said they would call medicaid and speak personally to the physicians of the review committee for Medicaid. I didn't even have to say a word. That afternoon the news came that before her doctors could even place that call Medicaid came back with an approval. In less than a week Shannon's procedure had been approved!!! God moved a mountain today.

The next part of news was heartbreaking. Shannon's Staph infection was not the type of Staph they had originally thought it was. Even with Medicaid's approval Shannon will need two surgery's, one Pic Line procedure and 3-4 days of antibiotics. The Staph infection that Shannon's body is battling is an aggressive type, 1 of 4 that require chest lines to be removed. Before chemo can start Shannon will need 1 surgery to remove the line, 1 procedure to add a Pic Line in her arm for rounds of 4 antibiotics to clear the infection, and a 2nd surgery to place a new line in her chest. 

Tonight was rough. Shannon could not hold her oxygen above 83 (normal is 98-100%), she was pitting in her chest because of how hard she was working to breathe, her chest had to be suctioned out by the respiratory team and most of the time Shannon just cried and screamed. She has been given a diarrhetic because she is retaining some fluid. She is connected to oxygen round the clock. Her chest line has puss and looks swollen. She will need to have it cleaned around 2am. She is on 4 antibiotics to fight the Staff infection. But...for now she is struggling less to breathe and is finally sleeping. 

God has this. It is the worst thing to go through. I have met a mother whose 12 year old daughter has an aggressive form of Leukemia and I've cried with her. I've seen one child go back to be with Lord and wept with his father. It's a hard place to be. But we trust the Lord that this will be a place of healing for Shannon. His ways are greater than I can understand. He is the author of the air, the designer of the stars, the giver of life and I love Him with my whole heart. He is keeping us in perfect peace while we wait.