Archive | December, 2012

Remarkable day

21 Dec

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Today was remarkable on many levels. First I saw my children after a long week of no contact. They feel, smell and sound so much better in person than over FaceTime. Our reunion was memorable and encouraging. I loved doing crafts together and better decorating my room. They made many great additions. We enjoyed a roof top lunch. It was not uneventful, but regardless more joyful than lunch without them! We even managed to meet Santa and his elves. They were busy bringing smiles to kids faces. The girls were excited to see him and receive a gift. It was hard for me to say goodbye. I could tell daddy was worn out, but handling the load well.

In addition to my visit I finished up my chemo regimen, and hope to remain pole free until we know how we will proceed. I am thankful for this next step forward. I have handled the chemo regimen pretty well. I am hopeful that this recipe will knock out the leukemia cells. We wait for my counts to drop and to then recover!

Lastly, there was a remarkable showing at the The bone marrow donation tonight. Last I heard there were 189 people swabbed and planing to be tested for the potential chance of being my match for my transplant. That is encouraging in itself. Thank you. I pray that The Lord would be at work. I continue to trust and know that I am in the hands of my Creator. Thank you for all who donated, volunteered and showed your love for me in this way.

And finally it looks like Christmas outside. I would be lying if I didn’t tell you my heart groans to be outside this building. Christmas break has always been a highlight to my year. Hears to changes for a year!

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Emotions

20 Dec

Letter from adam day 5^2

I will say to the Lord , “My refuge and my fortress, my God, in whom I trust.” He will cover you with his pinions, and under his wings you will find refuge; his faithfulness is a shield and buckler. You will not fear the terror of the night, nor the arrow that flies by day, nor the pestilence that stalks in darkness, nor the destruction that wastes at noonday. (Psalms 91:2, 4-6 ESV)

My faithful one,

I’ve often thought and joked that I don’t really have strong enough emotions. But, I’ve realized what I fear reveals what I love. For most of my life there was very little to fear, but recently I’ve changed my mind. Thinking about you and my girls and all the potential things that could go wrong has brought fear into my life in a more vivid way. I read this Psalm I saw the same emotions from the psalmist. But, he also gives the way to respond to fear. All his fears and all mine are really about future or potential things, irrational or unreal things. Yet, when God is my refuge and trust I can rest in the face of the future fears. The present power and protection of The Lord insulate me from fear of potential dangers. Yes, this experience has taught me fear, but it has also taught me trust and love. Sadly, I cannot guarantee myself or my loved ones a life free of pain and danger. But, I do have a God who gave me what I NEED for today. The strength and courage and hope for today’s fears!

Love,

Adam

Many ask how my mom is doing. Her surgery went well. Both aneurysms are drained, although they found two additional smaller ones. She is home and doing well. We are thankful that she faired well and is on the mend at home.

I get to see my girls tomorrow! This momma is thrilled! And I am looking at my last bag of chemo drip for this round!

Bone-Marrow Drive Q&A

20 Dec

Q: I am already registered with Be the Match, should I be tested again, how can I submit my results?
A: If one is already listed on Be the Match they have been considered and would have been contacted if they were a match.

Q: There are two different drives, one costs $175, one is “donation funded”, what’s the difference?
A: The Kashi drive (Dec 21) is a private test conducted specifically for Allie. The results are expedited, so if one is a match, he or she can immediately help Allie. The National Be-the-Match registry drive (Dec 28) allows one to register with the national registry, which takes 6-12 weeks for results. So, although this drive may not directly benefit Allie, it could be benefical to others in the future.

Q: Can I join the national registry after I have been tested with Kashi?
A. Yes, once you receive your results.

Q: The $175 cost of being tested through Kashi is a financial burden for me, should I still come or wait until next week’s drive?
A: Still come! Contribute what you can.

Q: What methods of payment are acceptable?
A: Cash, credit, or card.

Q: I’m not a match for Allie, can I still join the national Be the Match registry to help other families?
A: Absolutely. You could be a match for someone in the future.

Q: I am unable to attend the Dec 21 or Dec 28 drive (or I live out of town), can I still be tested?
A: You can find information through the Kashi and Be-the-Match websites.

Q: How will I know if I am a match?
A: You will be notified privately by the lab. The lab will not notify the doctor, until you have made a decision to go forward.

Q: If I am a match what happens next? What am I committing to?
A: If you are a match, you will be notified first by the lab. If you commit to donating stem cells, you will undergo a series of screenings by the Cleveland Clinic. If the screenings go well, the procedure will be scheduled. In short, the procedure includes drawing blood out of one arm, taking the stem cells, and putting the blood back in the other arm. More details will be provided.

Q: Are there side effects to being without stem cells?
A: Some potential side effects include headache, nausea, difficulty sleeping, fatigue and flu-like symptoms.

Q: Testing through Kashi is private, how private?
A: The lab will not notify the doctor by your name, until you have made a decision to go forward.

Q: I have a question that is not answered above.
A: Contact Keith Schmader: keithschmader@gmail.com

One more post to come with details about the CVCA Bone Marrow Drive.

Updates

19 Dec

Currently we are waiting for my mom to get out of surgery which started at 12:30 and will last for 2 to 3 hours. Many have inquired today. Please pray it ends soon and her recovery is smooth and speedy.

In regards to the bone marrow drive this FRIDAY at the Chapel in Akron, through Kashi Clinic Lab, the address is 135 Fir Hill, Akron Ohio, in the fellowship hall. We have an anonymous benefactor that would like to donate and cover the cost of this procedure for those that cannot afford it. That being said, be reminded that next weeks drive will be a free-be the match -national bone marrow drive, so if cost is an issue please plan on that drive. Thank you for the response to both of these drives. Please remember not only do I need the gift of life but many out there are in need as well.

Please contact Keith Schmader with any questions. Also please contact him if you are a nurse or medical professional and would like to assist in the process.
216-503-2121
keithschmader@gmail.com

Bone Marrow Drives

19 Dec

Thank you for the out pouring of love and interest in being a match for me. We have two opportunities for you to donate.

1. WHAT: Kashi Clinic Lab Bone Marrow Drive
WHERE: The Chapel in Akron: Fellowship Hall
WHEN: Friday, December 21, 4:00-9:00 PM
WHY: this donation will be tested for me privately. It will cost $175 to have it processed. You may add yourself to the national donor registration, after being tested for me. This test will be processed within 5-7 days. There is not an age restriction through this organization.

*** if you are unable to donate for some reason and would like to sponsor someone please email keithschmader@gmail.com, or show up to drive to donate.

***if you are a nurse and would like to help assist in the process please contact Keith as well @ keithscmader@gmail.com.

2. WHAT: Be The Match Bone Marrow Drive
WHERE: CVCA cuyahoga valley Christian academy
WHEN: not confirmed ( most likely next week)
WHY: This drive is free and will take donations. You will automatically be added to the national bone marrow registry. If you are a match for me after the screening process my nurse coordinator will receive this information. Think what a privilege it would be to not only help me by giving life, but the opportunity you might have one day to bless someone else down the road who has reasons to fight this disease.

*** I will get you more information as soon as it is available.Z********

If you have already asked for a kit via mail you can come to a drive as it may expedite the process.

Christmas Season

18 Dec

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My children are enjoying the traditions of the Christmas season even in my absence. Thanks to the beautiful friends The Lord has given to me. I know they miss me and I them, but the season continues. I love traditions and so enjoy seeing them embrace the joy of the season with those around them. Ginger bread houses are so fun, and from what daddy says we have sneaky nibblers on the candy. Look at the joy on their faces, so glad they don’t understand the depths of the journey.

I too am working to make this hospital room filled with the joy of the season. Thanks to the help, of my dear friend, kendall I am all decked out and ready to celebrate the miraculous birth of Jesus, and hope for a miracle of new life for myself. But regardless thanks to the sacrifice of Christ I experience new life each day, and have hope for tomorrow!

Please pray for my mom tomorrow as she will have two brain aneurysms coiled. Pray for peace and a successful surgery.

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Donation Information

18 Dec

Thank you for all of you interested in being tested for my bone marrow transplant. The quickest way to be tested for me is to visit www.bonemarrowtest.com for PRIVATE kit ordering and information about being a marrow donor. With Kashi Clinical Labs testing is no age or medical requirements to be tested to be a match for me; a physician will determine ultimately if you are a suitable donor.

The cost of the kit will be $175 for the initial HLA ABDR standard test which will give you results in 5 to 7 working days from the time we get your sample back in to the lab. We also offer STAT turnaround time of 2 to 4 working days for results for $375. In addition, you will be able to take these results and join the National Marrow Donor Program’s registry if you so choose.

Kashi Clinical Labs will send out the kits by FedEx Express Saver. This is included in the kit cost. If you need faster shipping you can pay an additional cost for second day air or overnight handling. Either way you will receive a return envelope with the completed shipping label attached so there will be no additional charges. You will receive all kit instructions and supplies, which can easily be completed in your home. Follow the instructions carefully before doing the simple cheek swab sample.

You will be asked to fill out a test requisition form giving your information and consent for testing. The form will have a space where you will need to know the following information for the transmission of results:
Transplant Coordinator: Karen Sands
Facility: Cleveland Clinic
Address: R32 9500 Euclid Ave., Cleveland, Ohio 44195
Phone: 216-444-4652
Fax: 216-445-7444

The results will be sent directly to my transplant coordinator upon completion of testing. Please elect to receive a hard copy of your results and Kashi will send them out approximately a week after the submission to the transplant center.

If you have questions about prior health history issues such as cancer, diabetes or other medical problems please log on to www.nmdp.org and read their page on being a donor and health related problems that would keep you from being a possible marrow donor.

Reasons to fight

18 Dec

Mom I am sorry that you had to go In to the hospital .mollie is begging for you to come I agree with her.plese right back soon Love the girls page Hayleigh And mollie to Allie Armstrong

This morning I read this with tears flowing down my cheeks. I miss these girls with all of my being. I groan within and long to squeeze them and reassure them. Remember to hold your kids and tell them you love them. None of us know what today or tomorrow holds! These girls are my battle field inspiration. I will come home to you.

Today is anew. I seek joy, forgiveness, and refreshed focus on today and the journey ahead. Pray with me that I can do this with eyes on Him. Pray that my kids would be fever free so they can visit. Pray for my mom as they prep her for surgery. Pray for my family, that we would all seek to know Jesus more through this and be more like Him. Without Him we are just like the world.

A sharp turn

17 Dec

Today is a new day. I am starting day three of six chemo treatments. It’s a different regimen than we have done before with the hopes that it will kill all leukemia cells. The original plan was to be infused with stem cells (another transplant) in 10-12 days. We have hit another speed bump that delays our process. I am in need of a donor -a match. I have had a lot of people ask me how to be tested. You can go to www.bethematch.org. This approach is free. You can also call the kashi clinic labs which is not free, 877-879-1815. Along with my name you would use my nurses name at Cleveland Clinic : Karen Sands.

I trust that The Lord is walking this journey with me. I am shocked at this detour but will continue to fight! Please continue to pray for His leading.

Appointment Time

16 Dec

Today ( Saturday) began as it usually does, night turned to day. I slept some after an exhausting day. My soul was weary, and my head was tired of thinking. I prayed a lot about today (Saturday) and asked for His hand to be actively caring for me.

In order for chemo to begin I needed a central line (Hickman). The nurses could not promise that this would happen on the weekend. I really wanted to get to started with treatment and if I could not, I wanted to go home. Around nine o’clock my nurse learned that there were ten of us who needed surgery. I was on the list which was a good sign it would happen today. We didn’t know when just that it would happen. My nurse Karyn was very friendly, I like her, as we talked I shared with her that I was going to pray that my Hickman would happen at 1:00. She laughed and said, I wouldn’t expect that, I think more like 4:00. I said that is fine, but I just want you to know I am praying for 1:00.

Here is where I tell you that I have been talking to God a lot. This journey feels different this time. It feels more uncertain, and maybe more urgent. I have told Him that I need to know He is with me. I know and believe that He is, but any time He could “show up” would encourage me by knowing He is here in this place with me.

Back to the story. Finally, my nurse heard from the surgery room, I was scheduled to get my Hickman at 3:30. This was great news, we were moving in the right direction. I needed one last test along with my Hickman before chemo could start. I decided to rest after adam left at noon. Then around 12:30 my nurse came in and suggested I shower now because the Echo technician, for my heart test, was coming soon. I showered and was throwing clothes on at 12:55, and there was a knock at my door. It was a transport team member. They were ready to take me down to the room for my Hickman placement. I just smiled and thought, Lord thank you for the reminder that you are walking this with me. I know that doesn’t mean you have promised me it will all be “ok” but you are doing this with me. You love me even here.

What was even more spectacular was I not only had I asked him to show up for me, but I told my nurse about this prayer. It was fun to know that she knew my prayer and would see my God, our creator, is one who does hear us. My nurse that came on last night had heard the story, word spreads. He is with all of us when we seek Him. He longs to be real to you. He is not a genie waiting to be tested, but He is your creator waiting to be asked to be a part of your day. Ask him to be with you and give Him a chance to reveal himself to you today.