Archive | March, 2013

Phase 1-biopsy

18 Mar

Not surprisingly I am on a plane again. It still stands true the only good thing about being away is that I am leaving sleet, cold, rain and landing in sunshine. Today will be a full day at MD. I know my counts are down because my mouth reminds me. When my platelets are low my mouth bleeds and I can taste blood, it’s delightful! In addition to labs and transfusions I will have my biopsy. This will mark the end of phase 1 of SGI-110. The prayer is that this “miracle drug” will have lessened the percentage of blast cells in my marrow. Tomorrow I meet with Dr. Garcia-Manera to get results and begin phase two of shots. I have been given today, and reminded that I must trust Him with what it holds. I embrace today.

Goodbye is never fun, and always hard. But as Paige said,” I will miss you mom, but this time it isn’t so bad because its only goodbye for 6 days not 4 weeks!” Thanks to a dear friend and client, they are able to join me in Texas. We can hardly wait to reunite in the sun! Being home was full of fun events, life catch up and a gamete of emotions, but it is ultimately where this heart longs to be.

O Lord Almighty, blessed is the man who trusts in you.
—Psalm 84:12

Time Together

17 Mar

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Our family has experienced days full of family activity. At the end of most days this mom plops into bed with weary eyes. Togetherness has been the ultimate goal and loving each girl the way we feel will most help them on this journey. The reality of the long journey these kids have walked is becoming more evident. The intensity of the distance between Ohio and Texas is glaring. We realize the girls have internalized and shown the effects differently.

Paige and I have had several talks about how her life is horrible. We have had to search for the good in this journey. It’s much harder to help such a young girl see how this part of our story is good. In one of our conversations she stated, “This week is special, but you guys are acting like life is normal, life is not normal mom!”
“Oh sweet girl, I know it’s not, but regardless of how normal life is, momma loves you more than you could imagine. But even greater than that is God’s love for you.”
I wish I could say she took great comfort in that thought, but I trust that this pain she feels is part of her story and her journey with Christ.

Hayleigh and Mollie don’t seem to have the ability to express there feelings, but they show them through a lot of tears. They seem to say, “life’s not fair”. I know we have all heard that before, and we always respond to that with the standard, “you are right life is not fair, we aren’t promised that life is fair.” We roll with the excessive tears.

Yesterday we celebrated Hayleighs birthday at Miss Spiders’s Tea Party where she enjoyed spending time with her family and friends at the ballet. Along with this special event paige experienced her first daddy daughter dance. She thrived with this individual attention with dad. Adam could tell theses moments meant more than her words could express. We all long for intimate time with those that love us. When we know we have their complete attention knowing nothing could get in the way of their focus.

I am amazed at the reality of God’s love for me and our family though this journey. It doesn’t always feel like we have His complete attention, yet He is always here. He is carrying us and loving us through this fire. He wants to havethis dance

!

Therefore, my beloved, as you have always obeyed, so now, not only as in my presence but much more in my absence, work out your own salvation with fear and trembling, for it is God who works in you, both to will and to work for his good pleasure. Do all things without grumbling or questioning, that you may be blameless and innocent, children of God without blemish in the midst of a crooked and twisted generation, among whom you shine as lights in the world, (Philippians 2:12-15 ESV)

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Akron General

13 Mar

Last night I drove the familiar drive to Akron. I needed a transfusion and decided to do it while kids were asleep. This meant trudging up to the too familiar, yet part of my past, 5400 hallway at Akron General. The walk and reminders of just a year ago were painful and haunting. There are many emotions that go along with this place and the memories. This marked the beginning of a very different world for our family.

My thoughts wonder a lot. Where did I think we would be on this journey one year later? I know I hoped the disease would be part of our history. A marking point in our story, but the past. Yet we continue to battle and walk the road set before us, not lacking deep emotions and feelings. I think the fact that the journey marked ahead is still long and hard, and in the right moment leads to discouragement. There isn’t a quick fix to make this better quickly. I stand firm in our faith that we journey together not alone, which allows me to wake up tomorrow and do it all over again.

For the Lord will not forsake his people; he will not abandon his heritage; (Psalms 94:14 ESV)

Home Again

12 Mar

How is it being home? It’s wonderful, busy, crazy, fun, emotional, fulfilling, draining, life giving, and where my heart is. Being in the same house with Adam feels comfortable and safe. Doing life with him is encouraging and fun. Thankfully the transition from living my single life to my married life is quite simple and natural. We are grateful for this time to reconnect. Talking face to face is by far more enjoyable than via the phone.

The girls seem quite excited to have me home. Mollie smiled a lot in the car on our ride home and let me hold her hand as we rode. Paige ran with such speed down the hall she nearly knocked me over. It was a warm welcome, her hug was full of emotion and we held tight for quite some time. I believe in the moment Hayleigh felt slighted because she arrived as Paige held tight. But the Birthday girl recovered as we celebrated her all day long. My presence is welcomed and noticed, yet life resumes to normal quickly.

We celebrated Hayleighs birthday with lunch out and an hour of play at Chuckie Cheese. This was her choice. Fun was had by all. Every girl loves her birthday. Hayleigh loved Monday because, it was her birthday, mommy came home, and she was the line leader. Life was good for a day!

I love being present in our life. I hate the time lapse. Things change in four weeks. Kids vocabularies expand, they grow, they have new experiences and feelings. It’s hard to see these changes and know you missed it. In addition to that I can see my absence in the cupboards and all around, because there is one doing the work of two. Adam is doing amazing, but he is one dad caring for three cluttery and needy girls. Its hard for me not to fly into over drive and trying to make it all functional for him, but I realize my main goal in being here is to be present in their lives.

It’s good to be home again. My heart is full.

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Encounters with God

11 Mar

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I am sitting on a plane headed home. My kids are within reach. My arms have longed to hold my loved ones for far too long, I am excited. It’s Hayleighs birthday today. She is turning 5 which seems hard to believe. Her life has been one that brings a lot of joy and laughter. Our little bird is growing up on us. Her sweet and exuberant spirit is contagious. We are blessed by her life. I ask The Lord to be her center as she encounters this world and the days ahead of her.

This weekend was full of fun and held great anticipation for today. Han and JD helped pass the time and make it rich with memories. I experienced God in a new way this weekend. It is exciting when we lean in and allow Him to open our eyes to the many ways He communicates with us.

As we rode the light rail to the rodeo on Friday, it was PACKED! My new germ fob self felt a little exposed. I was hovering behind my jeans jacket hiding from the possible germ attack. As we nudged up against our neighbors I noticed the gentleman next to me was reading 1 Corinthians on his phone. I commented that his book selection was a good one. After about 5 minutes he took his headphones out,
“ma’m I don’t know your name but I need to share something with you. The Lord has asked me to tell you that everything’s going to be ok. All that you are praying for is going to be answered. You don’t need to worry anymore. You are alright.”
I responded with gratitude, hope and faith. He said, “don’t thank me, He asked me to share this with you. I have to listen when He speaks.”
A woman standing near by was sobbing. I was smiling knowing that regardless of this mans prophecy over me and the truth behind it I have a Savior that is using this story, His story, for the good of His Kingdom. I have hope.

I felt Him reminding me-I am walking with you. Keep hoping in my name. On Sunday we visited a new church, a small church plant. It was a powerful worship service. Some may know the name Beth Moore, a passionate teacher of God’s Word, she leads women’s bible studies that are known world wide. She attends this church. I happened to be attending a bible study when I was diagnosed a year ago. A study on James, about hardship and pain. It applied to my life as I started this unforeseen journey. She teaches truth and allows you to know God though His word in a very powerful and moving way. If and when your local church offers her study be prepared to grow and know our God better, and do it!

As we were entering church, Han was inquiring about Beth Moore. Just as the words were out of her mouth, Beth rounded the corner. It felt as though she was a direct gift to us in that moment. I briefly shared my journey of leukemia. In that moment she prayed over me with passion and a desperate plea to our God to be my everything. To move within my bone marrow and to protect my family and to heal me. Again, I could hear Him reminding me that He loved me and is walking with us. The revealing of His presence in these ways encourages me. We continue to walk seeking His face and desiring nothing less than His perfect plan and peace. I pray He is real to you today in your journey. Look for Him because He is present and longing to be real in your daily life.

For we walk by faith, not by sight.
—2 Corinthians 5:7 nkjv

Since we live by the Spirit, let us keep in step with the Spirit.
—Galatians 5:25

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Your husband rocks!

9 Mar

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I got a phone call from a dear friend this week. I was walking keeping my mind busy as I am away from the ones I love so much.

She started her conversation with, “Your husband rocks! You need to know how great he is doing with your girls.” She had dropped off dinner and seen his love in action as they played and he kept the house “normal”.

I don’t take for granted that my sweet man is loving and serving our family only through Christ strength. He is doing a great job, and has a heart that desires to bring Christ glory. I miss him like crazy, but so proud of him. Thanks for the reminder. Babe you rock! I love you:)

Cowgirls and Tim McGraw

8 Mar

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Today I picked up my cowgirl Han and my city girl JD. We have never spent time together just us, adults, without kids.

I started my day at the hospital getting labs and my dressing change. I love that I live within walking distance, and can start my day with clear mind and a walk.

We sat and ate lunch together outside. A bystander leaned in and said “it looks like you girls are really going to enjoy each other.” We plan to make memories and enjoy this unique situation. I am thankful for my revolving door of love. This season of life is very different, but the small blessings along the way help. This time away is made special with this intimate time together.

We are taking in the rodeo and the sights. I have included a picture of a true southern belle with big hair and tassels! We did our best to look the part with our cowgirl hats, and my cohorts took it a step further in their boots. Along with the rodeo events is a Tim McGraw concert. A night out with the girls. A great kickoff to a fun and relaxing weekend.

At home in Cuyahoga Falls my family is battling the stomach flu. Please pray for a speedy recovery.

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God are you listening?….Paige

7 Mar

I received a text from Adam yesterday.
” Paige called home and was sad. She was having a rough day with friends and life. So I picked her up and took her and Hayleigh for an afternoon treat.”

You can imagine as mom being thousands of miles away my heart hurts. When we are near it is hard to see our kids feelings get hurt. I am thankful I have a husband that has a heart that beats for them and desires to hear why they at sad and the depth of their emotions.

As she processed with him about the day and the way her heart felt she shared some deep emotions for an almost eight year old girl.

“Dad, I am talking to God a lot and asking for the things to be different, and it feels like God is ignoring me.”

In adam and I’s brief conversation he told me he responded to her with agreement but more truth. “I too feel as though things aren’t the way we would wish them, but God does hear us and He loves us even if we can’t see Him moving and doing what we are asking!”

These are big things for her to be getting, yet we realize here heart is processing a lot! I miss those girls like crazy. My arms long to hold them and squeeze them and kiss them. Soon enough.

Here are some pictures of tracy and I during our day. We had a blast being together. I am grateful for friends and the joy that they can bring to my days that need filled. The latter picture is of me face timing with the girls before bed.

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Juiced

6 Mar

I am thankful for full days with my dear friend Tracy. I am experiencing a different position in life here in Houston. I am a mom yet not practicing this role. I miss the family desperately, but enjoy the uninterrupted moments I am sharing with my cherished friends. This shared time allows for the days, weeks and months to pass quickly.

Today we enjoyed a slow paced morning. We walked to the medical center and walked home. It was beautiful. I needed more “juice/blood” Transfusions. We ventured out to run a few errands in anticipation of being trapped for the evening. We endured the long haul and found ways to enjoy this time together. We continue to be encouraged and wait with anticipation for positive results on day 28, Monday March 18!

Impactful impression

4 Mar

This is the day that The Lord has made, I will rejoice and be glad in it. Sundays should feel different, it’s His day. In the south I have learned that a majority attend church. Mom and I visited First Texas Baptist. It has good bible teaching and very applicable to life. He taught out of Acts 5.

33 When they heard this, they were enraged and wanted to kill them. 34 But a Pharisee in the council named Gamaliel, a teacher of the law held in honor by all the people, stood up and gave orders to put the men outside for a little while. 35 And he said to them, “Men of Israel, take care what you are about to do with these men. 36 For before these days Theudas rose up, claiming to be somebody, and a number of men, about four hundred, joined him. He was killed, and all who followed him were dispersed and came to nothing. 37 After him Judas the Galilean rose up in the days of the census and drew away some of the people after him. He too perished, and all who followed him were scattered.
38 So in the present case I tell you, keep away from these men and let them alone, for if this plan or this undertaking is of man, it will fail; 39 but if it is of God, you will not be able to overthrow them. You might even be found opposing God!” So they took his advice, 40 and when they had called in the apostles, they beat them and charged them not to speak in the name of Jesus, and let them go. 41 Then they left the presence of the council, rejoicing that they were counted worthy to suffer dishonor for the name. 42 And every day, in the temple and from house to house, they did not cease teaching and preaching Jesus as the Christ.

From this reference He taught that we need to be people that are living lives that influence those around us leaving an impact, but not for our glory but for His! And when we love our lives devoting our days; work, children, friendships to Him we will be influential which will leave a impact. The principal seems quite simple yet, because of our sinful nature can be quite complicated. I was challenged to continue to reflect on life. I relish in the thought that when things we do that are Gods work it is impossible to overthrow or thwart. Certainly motivates me.

Today is a tough goodbye, but I have cherished my time with mom. We have laughed and enjoyed this time together, although unusual circumstances we cherished the memories. Today is mom’s birthday! A life to be cherished and celebrated!