Archive | February, 2013

Trial day #1

16 Feb

Today we started the trial drug SGI-110. As I received the shot I prayed that The Lord would allow this trial drug to find the cancer cells and destroy them. It was a fine morning. Nothing too exciting to share. We woke up early and travelled to MD. We waited for drug preparation and then had some preliminary tests. The shot itself was manageable. It burns but, it is temporary. There were not any adverse effects to me today. They told me not to expect many adverse effects.

We know this is a slower acting drug then traditional high dose chemo, but we expect for it to gradually widdle away at my cancer and get me to remission. Which will get us back in que for a transplant. It’s a journey that will be one day at a time. We are thankful for our start on this next phase.

Let us look to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God. Consider him who endured from sinners such hostility against himself, so that you may not grow weary or fainthearted.
[HEBREWS 12:2-3]

His Truth

16 Feb

This is the cry of my heart. I long to cling tightly, and to live close to Him! I like the idea of Him dwelling with me. Lord, please help me to keep this perspective.

February 16

Thank Me for the conditions that are requiring you to be still. Do not spoil these quiet hours by wishing them away, waiting impatiently to be active again. Some of the greatest works in My kingdom have been done from sick beds and prison cells. Instead of resenting the limitations of a weakened body, search for My way in the midst of these very circumstances. Limitations can be liberating when your strongest desire is living close to Me.

Quietness and trust enhance your awareness of My Presence with you. Do not despise these simple ways of serving Me. Although you feel cut off from the activity of the world, your quiet trust makes a powerful statement in spiritual realms. My Strength and Power show themselves most effective in weakness.

“Be still before the Lord, all mankind, because he has roused himself from his holy dwelling.”
—Zechariah 2:13

This is what the Sovereign Lord, the Holy One of Israel, says: “In repentance and rest is your salvation, in quietness and trust is your strength, but you would have none of it.”
—Isaiah 30:15

But He said to me, My grace (My favor and loving-kindness and mercy) is enough for you [sufficient against any danger and enables you to bear the trouble manfully]; for My strength and power are made perfect (fulfilled and completed) and show themselves most effective in [your] weakness. Therefore, I will all the more gladly glory in my weaknesses and infirmities, that the strength and power of Christ (the Messiah) may rest (yes, may pitch a tent over and dwell) upon me!
—2 Corinthians 12:9 amp

20130216-090052.jpg

It’s a go!

15 Feb

After days of uncertainty we received the green light. The insurance company gave a verbal acceptance that allowed MD to get things started. We will begin this trial drug tomorrow. My counts are already low, and the common side effect is a lowering of all my counts. The hope is that this drug will knock out the cancerous marrow as it drops my counts. Much like chemo it will kill the good with the bad.

As we pray about this drug we hope that it will wipe out my cancer and allow us to move forward with a transplant. The road continues to seem long, yet the daily focus keeps the journey walkable. Being a part of a trial drug study is weird. It feels positive because you know one day this drug could be actively saving ones life, yet the current activity is still being researched. We take this opportunity and run with it, we have the green light. Ready, set, go!

Valentine

14 Feb

I spent the day, the entire day, with my valentine. This is unusual, yet a privilege. I love having his undivided attention but realize it is unnatural for us. We laughed today as we strolled in the sun how we were living the retired, “old” people life. Thinking about what we would eat next and what we wanted to do next. We have never lived a slow paced wide open lifestyle. It feels foreign and uncomfortable. We are grateful for each day we share together and realize its a gift, but we missed our three other valentines.

We had a chance to FaceTime and hear about the girls days. It’s fun and complicated to get them all on screen and enjoying their turn to talk. It allows us to feel like we are there with them. We hear the tears, the fighting and the joy. Mimi and Papa are doing a great job holding down the fort. We are grateful. We miss life with them. Adam and I continue to find ways to know each other better through these days. We journey each day together seeking His guidance, and making fun out of the waiting.

As we began the lent season we decided to do a devotional together. You might enjoy this devotional as it reminds us of our need for a Savior. You can find it at http://thegospelcoalition.org/blogs/tgc/files/2013/02/Journey-to-the-Cross.pdf
“Lent is not about your faithfulness, but rather about the faithfulness of Jesus on your behalf. He is the faithful one!”

We continue to wait and hope that the insurance approval process would be expedited. In the meantime we wait and trust. We celebrate that I feel well and can enjoy these days. It’s hard to keep focus as we miss “normal” life, but embrace what this new normal looks like. Today I celebrated the sun shining here in Houston, and my day spent with my valentine.

Delay

13 Feb

In response to our blog post in regards to our living situation, we have felt loved and so cared for. Thank you. This transition is overwhelming and quite a change. We are taking each day as it comes. Adam and I have never spent so much time just the two of us. It’s fun, but incomplete.

We expected to start the trial drug today, but had a surprise delay. I have not been approved by the insurance company. This could take 3-5 business days. We are hoping for less. I am praying that the process will be expedited. This curve ball deflated me for a few moments, but as reality sunk in and the trust that my heart feels replaces all fear. As I pray I seek His timing and acceptance to begin our journey to remission.

Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. (Romans 5:1-5 ESV)

Loved by His people

13 Feb

The love shown to us throughout this journey is encouraging and a constant reminder of how He uses (us /you) in others lives. We are grateful.

Be a Part of
Team Armstrong

In light of Allie’s new treatment plan we are hosting an open house to show our love and support to the Armstrong Family.

Thursday, February 14th
11:00 am – 1:00 pm
7:00 pm – 9:00 pm

At the Eck Household (Paul and Tracy)
3055 Forest Ridge Ct.
Fairlawn, Oh 44333

Bring your kids, your neighbors, your friends, family, anyone who wants to encourage Adam and Allie as they are in Texas.
We will collect donations (cash/check) as well as sending a box of encouraging letters and/or gifts if you would like to contribute.

If you are unable to make it on Thursday and would still like to contribute you can drop off either at Tracy’s house or Jessica Cooley’s anytime before Saturday.

Thanks for loving this family!

Tracy Eck 330-701-2407
Jessica Cooley 440-591-0146

The MD Anderson plan

12 Feb

Yesterday we returned to Houston and MD Anderson to hear what they had for us. After a little travel adventure, which involved a missed plane, we made it. Though technically we didn’t miss the plane at all we could see it clearly but it was beyond the “sealed” jetway door. I am not sure why that door is so hard to open, but they told us it was impossible to open. So we spent some extra time in the Charlotte airport, which involved Allie sleeping against my shoulder while I read a book one-handed. (the one-handed part makes it more impressive, like a one-handed push-up) When we landed we went straight to MD and learned that Allie qualified for a clinical trial.

The trial is a phase1(the lower the number the earlier it is in the testing process). This drug, blandly titled SGI-110, is not brand new and has been effective against AML in other patients. It is administered through a shot once a day for 10 days as an outpatient, which is nice. So Allie will get 5 shots, have 2 days off, then get 5 more covering 12 days. Then we will wait until day 28 for a bone marrow biopsy to see what it has done. It works slower than chemo and they expect to repeat this cycle several times. The good news is that after this first month cycle we can come home after day 12 and return before the biopsy on day 28. So it will settle into a roughly two week here two week home cycle. This is probably about the best situation we could have. Now we need to figure out how to live down here since Allie won’t be admitted.

We are juggling between hotels and shuttles as we become better acquainted with the area. Thanks to the generosity, love and help of many we are making this transition. Tonight we had a lovely meal with some new friends who have been down this clinical road with one foot in Ohio and one foot in Texas. It was nice to have their friendship and advice. So tomorrow we start with shot 1 and we will work on living arrangements.

Weekend

12 Feb

We made a surprise appearance to the Midwest over the weekend. We made a very last minute decision to fly home and spend the weekend with our girls. Friday I had a spinal tap. This test was looking for disease in my spinal fluids. Thankfully these results were negative. We will not be treating anything but the existing AML.
Unfortunately an adverse response to a spinal is a debilitating headache that looks a lot like a migraine. This started Saturday and has continued unto today. This headache is extremely different than the one mentioned during our Disney trip. It’s directly related to my spinal tap and has potential to last a week. I am praying it will leave me tonight.
Our time at home was sweet. We saw friends and got to return to our church home and woke up next to three little girls. Being sick was of course not part of the plan, but regardless being around the sights and sounds of home were cherished. Even Saturday as the girls cried much more than expected I embraced our normal and realized these sounds bring me great joy.

We started our return journey this morning early. Any time the alarm clock is set prior to 5, it’s a rough day. We made it but the flight was delayed. Then in charlotte we missed our connecting flight. Thankfully we caught the next flight out. The flights were rough with the winds today.upon our return to MD we met up with our Dr physicians assistant, we will talk with him tomorrow. After reviewing our results the options were not many. We were approved for a trial drug that is early in its study but proving to have great success. If you know me less decisions are better. This PA was very encouraged about this study and the success of its trial thus far. As always we continue to trust and know that He has walked before us. More importantly He loves us. We will share more specifics of the study after we meet with Dr. Garcia-Manera tomorrow.

MD Anderson

8 Feb

Life has been a whirlwind of new experiences. Adam and I flew alone, it was like a date, to Atlanta and enjoyed dinner with my brother David and Jessica. We caught our next flight to Houston and landed at midnight which was 1:00 our time. We generally are not night owls, but we made it. In addition to our late night ours we awoke to our alarm at 5:45 am to venture to our new medical home MD Anderson.

Upon our arrival via shuttle we started our twelve hour day with a business contact reviewing all the paperwork. Then we met with our new nurse, Evelyn. After this initial meeting we had a tour guide that took us to our next destination at the labs. After my bloodwork we were led to the chest X-ray area. Following this we walked the hospital locating food and other areas. Next was my bone marrow biopsy. This hospital has different approaches, but I embraced there differences and allowed myself to trust their system. We waited a lot! We met with our new Dr. Garcia-Manera around 4:30. He was very nice, direct and insightful. We know that I have AML, with 80% blast. We are waiting on the chromosome results. This will better help him develop a plan of action. It sounds like it is more than likely we will be here for treatment. We continue to pray about this next step. As before we are asking The Lord for clarity, and that it would be so clear we would know it is the way He is calling us. As a result of my headaches he had me get a brain catscan and a spinal tap. The cat scan results are back and clear. My tap is complete, the preliminary results look good. This we are thankful for.

As we pray about the days ahead we seek His plan. We long to rest there. We ask for His hand and protection for our girls. The unknown is hard, but we know He has gone before us.

Unknown goodbye

7 Feb

20130207-003401.jpg

Goodbye is never easy. I don’t like goodbyes. All my cherished friends and family that live away make me practice goodbyes more frequently than desired and I still don’t like them, nor have I improved at my execution without tears and sadness. Leaving our three princesses ( they might think that is their name after this week) is hard, and the unknown timeline makes this farewell painful. Anything unknown is hard, but the inability to assure them we will be there soon or see them in a few days is awkward and uncomfortable. With many hugs, kisses and waves we watched our girls fly home with the best stand in’s imaginable. As I watched their plane from inside I was reminded that these “princesses” are not ours and that He longs for us to love them with open hands allowing Him to be their Father. We will miss them terribly, but for the next few days we hope to learn about how these doctors will help defeat this disease within me so we can continue to do this journey together, the five of us.

On a happier note we had a wonderful trip with the family. Our days were filled with many memorable moments. We made the most of our days and embraced the present. The girls did an amazing job with the long hours and change of pace. We encountered all princesses either privately or in prompt. All were spectacular and over the top interactive with the girls.

One magical story worth sharing includes Cinderella, sweet Paige, and a man named Joey. On Monday as we drove the 10 minute drive to the parks, both Hayleigh and Paige colored pictures for a few of the princesses. Paige was consumed by her interactions with the princesses and she forgot to give Cinder her picture. Later in the day as we waited for the afternoon parade, in our VIP seats (thank you Peter), Paige asked our cast member at this area if she could deliver a picture to Cinderella. This led to a meeting of our new friend Joey. He promised to deliver to Cinder. Later while the family enjoyed a slow paced train ride around magic kingdom, we passed Joey just before entering the Frontier-land train stop. While waiting for passengers to board at the Frontier-land stop the conductor approached and asked if Paige was with us. Upon our assurance he delivered a thank you from Cinderella. Paige was amazed, we smiled. Later that night in our VIP seats for the night time electrical parade we enjoyed hot cocoa and cookies. As the park lit up and floats appeared we found our last bit of Disney joy for the day and danced. As Cinderella’s float neared, she found Paige with her eyes and thanked her for her picture. We all smiled as our eyes met.

I am continually amazed at the kindness of the people journeying with us. People that know our story, and people that only know what the story “appears” to be. We encountered many wonderful people and experiences while in the world of dreams. We were able to celebrate and enjoy these moments living in the present not fearing what is ahead. I am thankful for this. Besides my head adorned with a scarf we appear to be a normal happy family. We laughed, we danced, and sang. We were aghast at the prices of many Disney things yet we loved it. We are grateful for this trip. We will all remember this adventure for days to come. Mimi and papa were a huge help and a definite must for our success. A big Thank you to Disney, to friends who made it happen and new friends who we met along the way.

20130207-003411.jpg