Friday, December 19, 2008
Above are pictures from our adventure outdoors today.
Thank you Lord that we live in a state the experiences all 4 seasons....your art work is amazing!
Monday, December 15, 2008
Sorry I have not posted in a while. We had family Christmas over the weekend.
Bella completed her second phase of treatment today, we are on to interim maintenance which will involve intervenious chemo every 10 days and a spinal tap every 4 weeks. We have 2 months of this before we go on to the next phase which repeats the first month of treatment. Bella did great today and has been in a sweet fun mood all day. Upon coming home from clinic, she received a package in the mail from our friends, the Wheelers! Thank you Lindsey, Chris and Eliana...this was a wonderful gift for Bella and one she will treasure always. It's a wonderful reminder that our hope is Jesus.
As you can see from the pics, Bella is maintaing keeping her hair. She has lost a 1/3 of it, but it has just thinned out, not fallen out in clumps. Some children hold on to their hair longer than others, another wonderful blessing from God.
Sweet little Abby continues to need prayer as well as her family, she is back in the hospital. We are also asking for prayer for our friend Hannah who is fighting Rhabdo, she too is back in the hospital.
I so appreciate you checking in and hope to post wonderful pics soon with more good news on the chica.
Blessings to all, Susie
Tuesday, December 9, 2008
In addition, we had a challenging weekend with Bella. She is pretty much on my hip as she only wants to be held by myself of Dave. If I leave the room, she breaks in to tears. She is terrified of going to bed and taking a tub. She wakes up in the middle of the night screaming and we cant calm her down. If Bella was a defiant child, we might see this differently, but she's not. It hurts my heart to hear her crying this way, I know that there is something wrong, but she is only 15 months and cant tell me.
I felt slightly defeated tonight and frustrated. My tank felt empty...I was running on fumes. After getting all 4 kids to bed, I grabbed my bible and headed for the tub. I was desperate for an answer from God. "I cant do this anymore...I am tired Lord, I am not strong enough for this." And He said "Your strength will come from settling down in complete dependence on me". Ish 30:15, The Message Bible. Just what I needed to hear, its not my job to figure this out...its not my worry, its His. I am to lean on, trust on and rely on Him. How very easy it is to want to take control of the situation, after all, if were made in His image, we can figure this out. And then, things begin to really spiral out of control and were yelling "Lord, I cant take this anymore" and He say's "I never asked you too, you did this all by your self." And then he calms us down and say's "My mercies are new every day". I personally take comfort in this knowing that God's time is not our earthly time, so "every day" can mean "right now".
I have a quote I used to keep on my mirror, its now etched in my brain (but after today, I think I need to put it back on my mirror). "Good Morning! This is God...I will be handling your problems today and I do not need your help". No He does not, it seems I get in the way every time I try to help Him out. So tonight, I go to bed forgiven for momentarily forgetting where my strength comes from and I "count it all joy" knowing that God is up to something wonderful.
Sunday, December 7, 2008
I am deeply saddened by the news of one of my blogging buddies, Carla. Her daughter Josi was killed in Guatemala...her adoption was awaiting an embassy apt, she was due home before Christmas. Please visit their site and offer words of encouragement and prayer. My heart is heavy for them, but they are strong in their faith and I know they will receive the peace of Christ.
Thursday, December 4, 2008
It's snowing out, as it has been all week. I am on the 7th floor of the hospital with one of the greatest views in the city. I look out for miles, I can even see the hills of the lake shore coastline. Tonight, I look out the window of this hospital room and I see glittering snow falling gently on my city. Even though its 1:30 am, the city is completely lit up. I cant help but sit here and think how blessed I am to experience this sight from this room rather than my front living room window. It's peaceful, magical and hopeful.
This is the perfect end to a special evening. Bella did much better today, but she is still struggling with any medical professionals coming near her or in our room. This is something we had worked through after her first admission, but after the events of yesterdays feeding tube procedure, she has lost faith in the staff, but I have not. She will in time come to trust them, but I cant blame her one bit for the fear she is not yet able to control.
Bella is struggling with sleeping here at the hospital, she does not want to nap and she wakes up often crying. I dont think she is uncomfortable, I think she is just scared and out of sorts. Going home is going to be good for both of us. Tonight after waking for the second time at 10 pm, I decided bedtime wasn't worth fighting, I was going to make the best of it. I am so very glad I did. Bella and I spent an hour and half rolling around on the bed laughing, doing zerbet kisses, playing peekaboo, giving Molly the bear crackers and listening to her heart beat, snuggling and just being girls. It was absolutely delightful, a treasured time. Who would have thought that so many wonderful memories and bonding moments could come out of a Luekemia diagnosis. So I say again "How big is my God?"! Only He could bring joy and good out of this current "circumstance". I just love how He loves me so.
So the Princess now sleeps....all is calm on this snowy night....All is bright.
Tuesday, December 2, 2008
Bella received her feeding tube today through her little nose. Unfortunately, it was a physically traumatic event for her, not because it hurt, but because she was afraid. The procedure is no more painful than a single IV, however, it does require for no parent to be in the room as well as being strapped down. I really thought I would be ok, I knew this was the best thing for both Bella and I. In order for both of us to be home, she needs to receive her meds, fluids and nutrition...this tube will achieve that, but seeing terror in your daughters eye's and walking away from her side is painful. I can only imagine how God must have felt when He turned his face away from His son in order for salvation to be achieved for all who choose to believe. When I looked in to Bella's eye's, I could truly feel God's compassion for the moment, yet my physical heart was hurting so.
It took me 2 hours and a dose of Benadryl to calm Bella down after that event. She took a 2 hour nap and then we took a walk around the same hospital halls, but in a fun kids wheel chair. We also spent some time in the playroom where she quickly decided to take a tug at her new tube while I was looking for toys. When I turned around, it was hanging down to her chin! Ugh...I quickly stuffed the tube back down and brought her to our room and called the nurses. That resulted in a new bandage change to secure the tubing...and another 1 1/2 hours of me calming Bella down. But, she sleeps.....and I have prayed over her to have "the peace of Christ that passes understanding". She has no way to process all this, she cant understand, but I rest in knowing that as she grows in to a beautiful young woman, she will never remember this time.
My husband calls her our "miracle baby". How different her life is because God placed her in the arms of our family, in this town, at this time. This journey is not by any means fun, but we find the joy in it everyday...and we have seen the face of Christ more times than we can even recite. We have the privilege of growing our faith deeper than we could have ever imagined. And we have the absolute gift of raising and loving Bella and our boys. So all is well, God is good all the time, and He makes good of all things. I love seeing on a daily basis just how big our God is!
My sister-in-law sent me the message below. I hope it brings you as much victory and power as it brought me. It was a good reminder of just exactly who I am. "With all that I am, I praise the Lord".
I KNOW WHO I AM
I am God's child (John 1:12)
I am Christ's friend (John 15:15 )
I am united with th e Lord (1 Cor. 6:17)
I am bought with a price (1 Cor 6:19-20)
I am a saint (set apart for God). (Eph. 1:1)
I am a personal witness of Christ. (Acts 1:8)
I am the salt & light of the earth (Matt 5:13-14)
I am a member of the body of Christ (1 Cor 12:27)
I am free forever from condemnat ion ( Rom. 8: 1-2)
I am a citizen of Heaven.. I am significant (Phil 3:20)
I am free from any charge against me (Rom.. 8:31 -34)
I am a minister of reconciliation for God (2 Cor 5:17-21)
I have access to God through the Holy Spirit (Eph. 2:18)
I am seated with Christ in the heavenly realms (Eph. 2:6)
I cannot be separated from the love of God (Rom 8:35-39)
I am established, anointed, sealed by God (2 Cor 1:21-22 )
I am assured all things work together for good (Rom. 8:28 )
I have been chosen and appointed to bear fruit (John 15:16 )
I may approach God with freedom and confidence (Eph. 3: 12 )
I can do all things through Christ who strengthens me (Phil.. 4:13)
I am the branch of the true vine, a channel of His life (John 15: 1-5)
I am God's temple (1 Cor. 3: 16). I am complete in Christ (Col. 2: 10)
I am hidden with Christ20in God (Col. 3:3). I have been justified (Romans 5:1)
I am God's co-worker (1 Cor. 3:9; 2 Cor 6:1). I am God's workmanship (Eph. 2:10)
I am confident that the good works God has begun in me will be perfected. (Phil. 1: 5)
I have been redeemed and forgiven ( Col 1:14). I have been adopted as God's child (Eph 1:5)
I belong to God
Do you know
Who you are!?
Keep this bell ringing...pass it on
'The LORD bless you and keep you;
The LORD make His face shine upon you
And be gracious to you;
The LORD turn His face toward you
And give you peace..'
"Stop telling God how big your storm is. Instead, tell the storm how big your God is!'
Monday, December 1, 2008
We are back in the hospital. Bella is still not eating and drinking very little. Yesterday she only took 8 oz.'s over the course of the day. She has been admitted back in to the hospital for fluids and to have a swallow therapy test done to find out why she is not drinking. We also cant keep any medicine in her as she throws up every time we give it to her. We are so blessed with an incredible medical team and have complete confidence in them finding out what the issue is. They believe it is a side effect of her chemo to her nerve endings. She also is still not standing or walking again yet, physical therapy has been ordered as well. At this time, they are planning to put in a feeding tube in her nose so that we can get liquid, food and meds in to her system. I am hopeful we will not have to do this, but at this point, I just want to be able to care for her at home.
More later, thanks for your prayers and encouragement.