Merry Christmas

Its ABSOLUTELY POSITVELY ................

Three Boys and a Princess

Jake in his Igloo

Sam in his Igloo

the Princess in her Santa Suit-Thanks Candy and Kya Blue

Going to be a WHITE Christmas! It's beautiful outside, come March 1st, I struggle with that comment, but today, its a marshmallow world here in Michigan. We received almost a foot of snow from 6 am this morning till about noon today. We already had about 6" on the ground. The boys last day of school before Christmas break turned in to a snow day, so we took Bella out to play. She really likes the snow, its the wind she does not care for. It's quit entertaining to me that this sweet daughter of mine was born in the country of "eternal spring", and here she is in snow that is over her head. It's expected to continue all the way through Christmas Day with a few breaks. Being that we are on the west side of the state, we experience lake effect snow showers.

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!

Phase 2 Complete!

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

And then there was NONE!

It was there, now its gone!

First Sled Ride

Catching Snow Flakes

Not so sure about the sled

After decorating the tree....sorry Candy, she really is cute in the dress.

My Babies...tube No more!

Three NIGHTS....4 DAYS....these are the number of days I spent in the hospital with Bella last week to have her feeding tube put in place. Not only did she have to have the procedure, but she needed to be rehydrated, they had to observe how her body would handle the feeding tube and lastly, a spinal tap. At 8:45 pm this evening....she PULLED IT OUT! She was sitting right on my lap, she started having a sneezing attack, I looked down at her and she was looking straight at me with her eye's wide open, a serious look on her face and the tube hanging from her tiny fingers. She knew what she had done. Every time she gets her hands near that tube I start telling her no. The boys were running around saying what do we do. My answer....'she's going to bed!' Of the 6 weeks since Bella was diagnosed, I have spent 3 of those weeks in the hospital with her. Two of those visits were because Bella would not eat or drink, this feeding tube was the solution. In the morning, I will have to call Bella's Oncologist.

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.

Please lift this family up

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.

http://azhderianfamily.blogspot.com/

All is Calm, All is Bright

UPDATE, Dec. 6....Were home! We were discharged Thursday evening the 4th. I will post more later, but please pray for Bella...she is emotionally traumatized and scared to fall asleep or go in the tub. All things she did when first coming home from Guatemala. There have been so many physical set backs for her, but we know this season will pass and God in all His glory will be revealed. She is also struggling with the new feeding tube and we were up twice last night with her throwing up. On a praise note, she is standing and walking along furniture again! Slow but sure.

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.

We can do all things....

Through Christ who strengthens us. That was the verse for the day...I spent a great deal of time whispering this in to Bella's ear as well as my own heart. And through His strength, we made it through a tough day.

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".

THE BELL 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..' Numbers 6:24-26 "Stop telling God how big your storm is. Instead, tell the storm how big your God is!'

Back Again

We had a wonderful Thanksgiving and have so very much to be thankful for. I plan to post on that later.

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.

Spinal Tap and Clark Griswold

Yup....that's us, the only 2 cars in the parking lot of the TREE farm. This lot is usually jam packed full with a skinny car trail down the center. Were it, us and the owners car.

SUCCESS!

My brother John and his family.

Do you see the glowing light around the "perfect" tree?

My 4 Blessings

The Ferrick Fam...

What a great weekend! Bella is feeling great and very much her little self again. Still not standing or walking, but very happy and content. Tomorrow she has another Bone Marrow draw and Spinal Tap for chemo. As a reminder, the first place these inactive Leukemia cells try to hide in is the spinal fluid. So last month Bella received chemo in her spine every two weeks, this month, she will have weekly spinal taps. I know all this sounds awful, but be rest assured, she feels nothing. We spend 1/2 a day at the hospital, but they "knock her out" for both the bone marrow and spinal tap". She goes to sleep in her Mama's arms and wakes up in her Mama's arm's. She has no residual pain from the procedure, only from the chemo. In the big picture, its all good and the hospital staff is incredibly wonderful. I just praise God all the time for His provision in getting our sweet girl home before this attack on her body took place. She could not be in better place for medical care.

On Saturday, my brother John and I and our families decided we would "beat the crowds" and cut down the annual family Christmas Tree. Every year, we head out on "Black Friday" after the girls are done shopping to tromp through the tree farm and find the perfect "Clark Griswold" Christmas Tree. Most years, we buy it off the lot as the best tree's have already been cut down. As you read this story, keep in mind this little venture was my idea, and because my brothers "heart is bigger than his brain", he agreed.

We got a late start, John was ahead of us on the road by about 5 minutes. I got a phone call from John "Sue, I just punched Marty Moose in the face". I laughed and kept talking and again I heard "No Sus, I really punched Marty Moose in the face, their closed, Opening Day is Friday". Between the two of us, we have 8 kids bundled up in their winter gear in the hopes and dreams of getting "The Tree". We have driven 40 minutes out of town and my sister and brother-in-law are on their way out to meet us for dinner after wards. John said there were workers outside, so I encouraged him to wait for us and Dave would talk to the workers and see if they would at least let us tag our tree to be cut on Friday. We pulled up to John's car at the tree farm and I yelled out the window "FIRST IN LINE"! Of course, my adorable smooth talking husband got the owner to let us cut down our trees. Not only that, we got to drive our vans all the way out to the Frazier Fur area. We avoided the crowds and didn't have to wait for the hay ride out to the trees and the dragging of the tree back to the front of the farm....we just drove on back. They even bailed the trees for us. Only my family. In case you do not know who Clark Griswold is or Marty Moose, its from the movie "Christmas Vacation" with Chevy Chase. This is an all time favorite of my family, if you have never seen it, I highly suggest you rent it this Christmas Season.

I heard a great quote today on our Christian Radio Station. "When God is seen small, problems seem big." We tend to focus on the problem and take our eye's off Christ. We underestimate the power of a Holy and Almighty God, we forget that if He created the heavens and the earth, He can certainly fix our problems. We turn to our flesh and how we can fix things instead of turning to His Word and confessing His promise for our life and believing Him for it. I am guilty of this as well, but with every big and little problem that comes my way, I lean closer and closer to Him as I know the success of His Word. It was a good reminder to me to turn that quote around and say "With every little problem, God's glory is shown bigger"!

Still Here

UPDATE for Friday, 11-21-08........WERE HOME!

Do you not know? Have you not heard? The Lord is the everlasting God, the creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives STRENGTH to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who HOPE/WAIT/TRUST in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Isaiah 40:28-31

It's really easy to grow weary when your living in the flesh, but when living in the spirit, you have super natural strength and perseverance. So many of you have expressed how strong I am, I appreciate the kind words, but I am only as strong as my savior. By nature, I am an over, under and around person. When I want something, I go after it till its done. Patience is not my natural virtue. God has done a great work in me over the last 2 years because I was willing to trust Him and not myself. I see now how that time prepared me for what we are enduring now. I do grow weary, I get tired, frustrated and down right sad, but I know beyond a shadow of a doubt that God is in this and that He will never leave me nor forsake me. I know I cant do it, but He can, does and will. Not because I deserve it, but simply because I am His daughter. My hope is you Lord.

Thank you Karen for sharing this scripture with me. Although I have read it several times, it has a new meaning for me today.

Were still here at the hospital. The doctors have determined that Bella does not have any viruses and that all this is a result of the chemo. Mother's intuition is always right. :) So the isolation banner has been removed from our door and the nurses and doctors entering no longer have to "suit" to come in our room and we are free to walk the hallways. They dont look any different than they did 2 days ago. They are putting her on another new medication that will settle her nervous system and lessen the pain so that her body can relax to stop the diarrhea as well as allow her to start standing and walking again. Since she is in remission (just want to give the Lord another shout for this...AMEN!), they are going to lessen her intervenious chemo this month as they feel it is more toxic to her system than beneficial. She will be taking an oral chemo this month as well as weekly spinal taps of chemo. Bella still does not want to eat or drink very much, I am pushing the fluids big time as that is our ticket out of here tomorrow. The best part of today has been that Bella is returning to her self. She has not been herself since mid September. She is officially off the steroids for a month and thus regaining her personality which is mild tempered, silly and incredibly sweet.

In the hospital....but good news!

UPDATE FROM YESTERDAY'S POST

We are still at the hospital for another night. Both the c-diff and roto virus came back negative. She is doing better today, only one poop and it did not explode out the sides...of course, now that were in the hospital and I have someone else to clean the linens. :) She is starting to eat and drink again and is sitting next to me playing with her i.v. cord. Ugh....I really dont care for that port, I still looks like the ambilical chord to me. Thanks for all the prayers, God hears you and so do we.


The good news, Bella is officially in REMISSION!!!! Praise you Jesus! The bad news is, we have been admitted into the hospital for at least the night. Bella has something going on with her intestinal system and they do not know what yet. She has no appetite and will not drink, I called the doctor because I was worried about dehydration...sure enough, she was. So were here until they figure out what's going on and stabilize her fluids. She will be just fine...just a little bump in the road.

Strength and Joy

Bella in the ER Sunday afternoon, check out these steroid cheeks!

God promised us that He would provide us with enough strength and joy for the day, so all we have to do is receive it. That couldn't have been more true this past weekend. Physically, were tired, but our hope and trust is in Jesus. Bella has not been feeling well since last Friday. She has had terrible diarrhea and an awful sounding respiratory cough. We have had more dirty cloths from this little peanut than the 3 boys combined. Yet somehow we have room in our emotional lives to laugh and enjoy life...and that can only come from the Father.

Bella began the weekend throwing up, she has had diarrhea this entire month, more on than off. She has lost her voice and has a terrible sounding cough...but no fever. The doctors are not sure if these are viral or a reaction from the chemo. On Sunday morning, I noticed her lips were chapped (a clear sign that her hemoglobin is down) and she was rather lethargic. I called the on call Pediatric Oncologist and asked if we could take her to ER for a blood draw and IV fluid, they didn't even question me. So Bella and I got to spend 6 hours of quality time in the ER, having a blood transfusion and fluids pumped in to her system. She improved and slept through the night. She ate and drank very little over the weekend, and has been the same today. This morning she had her bone marrow drawn, a breathing treatment and a spinal tap. We ended up spending another 5 hours at clinic today as again, more fluids were needed. We left with an additional medication on top of the 8 she already takes. She has completed her first month of treatment and is now being weened off the steroid. This month provides a break from the interveinous chemo, only spinal tap chemo's will be done weekly. Next month, we repeat this past month with a more aggressive treatment.

Thank you so much for checking in, we truly enjoy and rely on your comments. I recognize how God uses all of you to bring us strength...especially on the hard days.

Please pray for our friend Abby, her blog button is at the top of our blog page.

Blessings to All, Susie

A Single Lock

This is a lock of hair from our Bella. I cut 2 locks off her head last night, in case one got lost. I want to always have a physical memory of her "first head of hair". Her hair is beginning to thin on top, I didn't want to take a chance that it would start falling out in clumps before I got the lock cut.

4 weeks ago tonight, we sat in the hospital with the first news of our daughters diagnosis. She has had 4 transfusions since then, 4 chemo injections, daily bandage changes, 8-9 meds a day...and is now making her OWN good blood! AMEN! Monday, she will have another bone marrow biopsy to evaluate the active leukemia cells. I have no doubt in my spirit that this little girl will be in remission. We still have a long road ahead with treatment and unknown days, but the active leukemia will be out of her bone marrow and we thank God for all he has done and will continue to do.

As I placed the lock of hair in an envelope, I remembered that amost a year ago (around Christmas time) God gave me the scripture from the O.T. "I will repair and replace the years the locust have stole". Christmas time always brings about emotions, last year, Bella was 4 months old, still in PGN and abviously not home. My heart hurt, my emotions high at times...I was losing this precious time with my baby girl and I would never get it back. And then God gave me that verse "I will repair and replace". And here I am, with that scripture again. Forced to be home with her, not able to work for the time being, caring for her night and day, waking up with her in the middle of the night, back to bottle feedings because it comforts her, several diaper changes a day from all the fluids, changing bed sheets daily because she wets through them every night (again from all the fluids), re-teaching her how to crawl and kneel and stand, figuring out what foods she likes because the chemo has changed her taste buds and I think...."WOW! I see it Lord, not the way I would have liked, not my idea, but I see it. You have replaced the time lost". Here I am, doing all those new born things with Bella and she is 14 months old. She will even get a new head of hair and I will get to experience all of it, with her. We are getting time together that is not necessarily "normal", but definitely intimate and bonding. Many moments she is not herself due to the medical treatment, but there are many moments of joy and sweetness between just the two of us. And I cant thank God enough for providing the way for me to be home to care for my daughter. One minute at a time, one hour at a time, one day at a time. "Today is the day the Lord has made, I will rejoice and be glad in it".

Again and Again, I cant thank all of you enough for supporting us in this journey. It just bring us so much strength and ecouragement and we stand stronger and taller because we know we are being prayed for and loved on. God Bless you.

FIRE AND MORE!

Note to self, never leave a toaster oven when in use.

The result is melted to the pan.

Mom, are you serious...YES! And the funny thing is, she will keep these hats on, but not her bows or head bands. I wish I captured the smile she gave when I put it on her. Thank you Alex, Sam and Rachel for the adorable hat. Mom LOVES it!

This is Bella's new "bed head". This is why I say it has a new texture. She has smooth as silk hair and now it rats so easily. Oh my eighties girl.

All bundled up for a walk with friends.

Today started with the boys being home from school for a "in service day" and Bella having her chemo apt. Because it was also the house cleaning day, they would have to go with Bella and I to the hospital....so off we went. Fortunately, Bella did not need a transfusion today, so we were out in 2 hours. Get this, Bella gained 4 lbs. over the weekend! She eats non-stop, and I mean non-stop. She is rarely out of her high chair before her little hands are signing "more". This is an effect of the steroid and the doctors encourage her eating as she will lose weight in the coming months. More on Bella to come.

So finding humor in everything is a must in my family. We have been blessed with meals coming to our home 3 nights a week, one of which is Monday (clinic day). By 6:30 pm the meal had still not arrived and my boys were starving. So I decided we could wait no longer and quickly pulled out hamburg meat and taco shells. I had my 11 year old cooking the meat, my 9 year old entertaining Bella and I was trying to direct my 9 year old and my 11 year old in what they needed to do while answering a phone call from my Dad. Can you guess what happened next? I was standing right in front of the toaster oven talking with my Dad and I see my 13 year old flailing his arms yelling "Mom...Mom....MOM!" I continued to give him this look like "Nate, I am on the phone, hold on a minute". I finally turned to what he was pointing to and discovered the toaster oven was flaming..."Oh my gosh Dad, the toaster oven is on fire, I got to go!" Click... I completely forgot about the taco shells. The house looked like we had been running the fog machine all night, our home stinks like burnt popcorn, it snowed today and we have all the doors and windows open trying to get all the smoke and stink out, and now we have no taco shells. I quickly grabbed the toaster oven after putting out the fire inside, took it outside and just stared at it. With in seconds, my boys were out side with me, their was a brief moment of disbelief, Nate said "Mom, it looked like our gas log fireplace (and it did) and than a rousing boast of laughter. It was a scene directly out of a Steve Martin movie. We ended up having Nachos for dinner as the taco shells were now permanently part of my toaster oven. To say the least, a toaster oven is on my Christmas list. Any suggestions? (Candy....how do I get the smell out of my house? :) )

Bella, sweet little girl. I so appreciate all the prayers. She had her 3rd round of chemo this week. Her hair is now beginning to thin on top, it even has a different texture. Over the weekend, the "steroid monster" showed his ugly face and she was quit agitated and grouchy as well as VERY hungry. Like I said, she gained 4 lbs in 3 days. The doctor assures me that this will not last, good thing I purchased her cloths bigger for the long winter. She was very tired today, and she still will not stand or walk....she is so weak and her legs still hurt a little.

Tomorrow, a special friend and professional photographer will be taking photos of Bella and our family. We have not had any professional photos of Bella yet nor our family since she come home. I figured this was a good time, bef0re the hair was gone. My heart is still struggling over the loss of hair...but oh the joy all these hats have brought me. My husband say's, "honey, don't you think those are a little over the top?" Are you kidding me?! When you lose your hair, nothing is over the top. I love every one of these hats and I thank all of you profusely for your generosity and kind hearts for sending these to Bella. She also received an adorable bracelet with her name on it.

As always, I appreciate you checking in. God bless, and dont walk away from your toaster oven.

Strangers yet Friends

"I thank my God every time I remember you" Phil 1:3

I find my self reading and re-reading this passage of scripture every day. Phil 1:1-11. This particular passage from the bible radiates my feelings of my blogging buddies. You see, I have not had the opportunity to meet the majority of these women, yet we share a common bond...we all have children from Guatemala, we all made that journey or are still in it, and we found each other because of it. We have followed each others blogs, supported and prayed for each other, encouraged each other when we are having down times, and rejoiced at the up times. Even after the adoptions, we keep up with each other with the hope that someday, we will all get to meet while still on this earth.

These blogging buddies of mine were some of the very first people to contact me when Bella was diagnosed. They offered, support, prayer, love and peace. The picture above are items that have been sent to Bella from my blogging friends. Priceless to me, with each package I opened I swelled up with tears. I would think to my self "they don't even know me yet they care". And then I reminded, "you do know them, in Me, they are your sisters". Yes, they do know me and I them, my hope and prayer is that some day, I will have the distinct pleasure and joy of meeting them in person. Until then, I pray the "God holds them in the palm of His hand" and I rejoice in the sisterhood we share.

Thank you my blogging friends, I wish I had the perfect words to tell you how much you mean to me. I hope you can hear my heart when I say that you are such treasures to me.

Susie

Witness

Tonight, I witnessed history, and although Senator Obama was not my candidate of choice, he is my President Elect. I find it awesome and exciting that our country has surpassed the racial divides and has elected our first African American President...this alone is PROGRESS! So I stand with all my fellow Americans in supporting our new President. The bible clearly states that we are to respect our government, we dont have agree to everything, but we are to respect them. So I pray this evening as I will every day, that the mind of Christ is bound to our new President elect, that the Lord will "open the eye's of his heart so that he will come to know the hope to which He has called him too". This country has been blessed beyond measure, we give much and receive much. My family and I will stand with the new administration with the hope that we are standing with brothers and sisters of Christ, knowing that God's hand was in this election and that miraculous things will come of it. My hope is that for those of you who were like me and chose a different candidate, that you will follow suit and honor our God and this great country and pray "earnestly, with out ceasing" for our countries future and our new President. Change is good, and its all perfect when God is in it! Congratulations President Elect Obama.

Healing Manifesting!

Bella was a little done with me trying on all her new hats at this point. This one is from
her Aunt Tiff.

New Wand from friend Gracie

Thank you Stella and Courtney for my new Notre Dame Cheer leading outfit!
I think Mom may be more excited than me. And my hat, oh that is from Amy N and Gracie. Again, Mom is more excited than me, but it will grow on me. Especially when my head is cold.

AMEN! We received news this morning that the chemo is killing off the active Leukemia cells! The treatment plan does not change at this time, we are still facing a 2 year and 3 month treatment, but the leukemia cells are responding to chemo as desired and expected by the doctors. Of course we did not expect anything different, for we serve a mighty God and we believe as always that His victory will prevail.

Bella and I spent 4.5 hours at the hospital yesterday for her bone marrow draw, spinal tap and chemo drip. It does make a for a long day, but the joy comes in the one of one time with my girlie and all the wonderful people we get to meet and pray with. We have a special family the night Bella was diagnosed and admitted in the hospital, her name is Hannah and she is 13 yrs old. She is fighting a particularly rare childhood cancer. When you pray for Bella, please pray for Hannah's healing as well. We are on this journey with them and we stand in faith and belief that Hannah is healed.

The steroid is really taking effect this little princess now. Although she still eats in small bites and one piece at a time, she is eating in large quantities and often. It's so funny to see her eat so much. She is still battling diarrhea and a nasty diaper rash, but it all appears to be improving. I spend a great deal of time giving meds, changing diapers, laundry and bed changing.

In conclusion, thank you my heavenly Father for your promises, we have never doubted your abilities or your promises. Thank you friends and family who have supported us during this time, thank you blogging buddies for all your encouragement and for constantly checking in on us, thank you to my husband and my boys who tolerate so much change and willingly sacrificing so much normality at this time. It's hard for 3 little boys to be stuck at home all day due to being home bound for the time. I am definitely grateful that they get to attend school every day.

Blessings, Susie

Lady Bug, Halloween, and Birthday!

Pretty Little Ladybug....what happened to your teeth?

Look what I found outside?

Love of My Life....Happy 41st Birthday!!! So very glad you were born. You make my heart happy. I prayed for you and God gave me the desire of my heart in you. I love you!

Dave with "The Boys and His Princess".

Trick or Treating with the cousins.

Joe Joe is not so sure about his cousin Bella.

Grandma and Bella

Halloween not only marks Trick or Treating, costumes and fun for our family, but its also my husbands birthday. Like I said before, he is my treat not my trick. Bella and I are pretty much trapped at home all day as the Leukemia effects her immune system to the point where we are told she has none, so I took her up to the children's hospital today to pick up prescription diaper creme and to visit her nurses in her costume. Grandma came by later for a visit and then I got the boys all dolled up for a night of trick or treating at their cousins. None of the cousins were sick, so we were able to take Bella with us and again, she lit up when seeing her Joe Joe. We get very few smiles during the day from this sweet girl (chemo and steroids make children very grouchy and uncomfortable)....that is really hard for me, but she always smiles when she see's Joe Joe.

On Saturday night, we celebrated Dave's birthday, 41 years! He still looks like my high school sweet heart. Dave and I met our senior year in high school in religion class and started dating...we have been together ever since. Dave was the quiet, obedient, smiley boy sitting next to me in religion class. I was the chatter box and bubbly. However, this sweet man would sit in class and talk my ear off and when the teacher asked a question, he would raise his hand and answer it like he was paying attention. Then the teacher would call on me and I would not have a clue to the answer because I did not have the ability to talk with him while my heart was pitter pattering and listen at the same time. I love you Dave, and I love sharing my life with you and our sweet children. You are truly a gift and a treasure from God.

I have so much on my mind to post, I hope to have time this week to gather those thoughts.

Monday is another big day for Bella, she will be sedated in the morning for a Lumbar Puncture (pulling bone marrow to see how many leukemia cells the chemo is killing, I expect a great result) a spinal tap injecting chemo into her spinal chord (the spinal chord is the first place that active and inactive Leukemia cells try to hide) and she will receive her intervenious chemo. Fortunately for Bella and I, she will not feel any of this. Were believing for a great day.

Blessings to all!

Day 2 of Clinic

Bella on her way to clinic today. Looking at her, you would never know she was in this battle of Leukemia...yet when I see her expression, I am reminded of what we are dealing with. And then I hear a gentle whisper...."This is not your battle to win, it's mine". And I turn everything over to God and praise Him that He is in this and all is well.

2 weeks ago today, we received a call at 6:30 pm in the evening that Bella had Leukemia. Bella and I spent 8 nights and 9 days in the hospital, this week marked her first week of "clinic appointments", today being her second. We left the house at 10 am for a 10:30 am apt. The apt. was a "check up and blood count"....we did not arrive home until 5:30 pm. Bella's blood counts were again very low as well as her platelets, so she ended up having 2 transfusions this afternoon. This is considered normal for her circumstance, and is expected for awhile. Makes for a long day at the hospital, but praise God...my Mom came down for 2 hours so that I could go and have my hair done. Bella will understand this sacrifice of her Mom not being at her side for all her apts once she gets older. :) I knew something was off with Bella's counts as her lips were dry again this morning with a yellow over lay, she looked paler and she was more lethargic. I am amazed at what a difference a little blood makes. Several of you have asked what you can do to help, and we have posted these items on our blog site, but one of the biggest is GIVE BLOOD! I realize that your donation of your life line will not go directly to Bella, however, a blood donor saved Bella's life and the life of millions of others before. I knew giving blood was important, but until it happens to you or a loved one, you never truly understand just how valuable it is. Make the difference in the life of a child and a family, when given the opportunity, please give blood.

I have so many thoughts I want to share, so many examples of God's fatherly hand in our lives, thank you's that I want to extend...but its been quit a day and I am "feeling" exhausted. Bella wakes almost every 2-3 hours to eat. The steroid she is on not only makes her very fussy and uncomfortable, but also STARVING! i hope to post sometime tomorrow afternoon.

Tomorrow is Halloween, and my Husband's BIRTHDAY! Every year I tell him he's "my treat not my trick". Let me tell you, he is one amazing man. We plan to head to my brothers house for the boys to "trick or treat" with their cousins, if no one is remotely sick, we will be able to take Bella in her "lady bug costume" with her mask on. I really do not want to stay home alone, we love Halloween.

As always, I so appreciating you checking in. I have so much to share in the days to come and we enjoy sharing the journey with all of you.

God Bless!

As Promised...Drac's Ball Photos!

My Nate, this is what happens when you take pics after dancing. His "ice" face makeup melted off by now. Bummer, it was very cool. He also took off his wig.

My nieces and nephews

Entrance as walking into our home, yes, that is a fog machine going off. We have 3, the ground fogger is on the dance floor.

Brad, friend and "The DJ"

Cutest Baby of the Night-Yoda, my nephew Joey!

80's couple, Pam and Scott

My absolute favorite costume....Bob of "What a about Bob" (the movie), he even had a live goldfish in his jar, aka...Gill. And I kid you not, the night in shining armor is none other than "Dr. Marvin"! This is truly his name and title. They won best couple costume in my eye's. :)

Marilyn friend Suzanne, (Brad's Wife) and the Gothic Queen (ME)

40 and older group dancing to the 80's!

Brad the DJ, "You Da Man"!

Teen Dance

Everyone loves the YMCA, the adults were in the back by the fire place

My Gothic King in the Monster Mohawk wig

My Jake as a wearwolf, he took his beard off by the time I took this picture. I hand glued each piece of hair on his face.

Dave and I

This was our 7th Annual "Dracula's Ball". The first 5 years were adult parties, and we had some awesome and wacky costumes those 5 years. As the boys have grown, we decided to switch the party to a family party as I did not have the energy to do two separate parties.

We had friends and family come over Friday and Saturday to help us set everything up. I think I would like them back every year as it only took a day and a half to get up all the decorations, it takes me a week to do it by myself. It was a great night, we had so many people and everyone enjoyed the DJ talents of our friend Brad, owner of Celebration Entertainment. Thank You Brad, you totally make the party every year.

Bella stayed with my parents that night at their home as she can not be in any public environment due to her immune system. We truly enjoyed seeing so many friends and family and just laughing and dancing off the past week. Thanks to everyone who made this yearly event possible. We could never have pulled it off without your help this year. The boys loved it and so did we.