Monday, August 31, 2009

Hola from Mexico!

We made it. Arawen was a trooper, and is finally getting to sleep for a period longer than 30 minutes. We've had a consultation, a tour, supper, and his first medications are dripping into his mediport already.

Thanks for praying for safe travels. We're one bag short, but it's being delivered -hopefully. :) Hope seems to be the theme around here and we are trusting in our "God of hope." (Rom. 15:13)

Love to all of our fellow hopefuls- Jordan, Katelyn, and Arawen

P.S. More to follow- including pictures of Jordan's new 'do.

Tuesday, August 25, 2009

Tuesday, August 25, 2009 2:51 AM, CDT

We had a wonderful, time in the Ozarks. We were blessed to be Mom and Dad Schroeder's timeshare guest, blessed to be with Jay and Jackie, and blessed to have Kent and Jan's boat to enjoy. Thank you Jesus for vacation! The weather was nice. The place was excellent. The girls were good. The food was amazing. The company was exceptional. It was a blast.

Again, we cannot say thank you enough for all of the prayers you all have prayed, do pray, and will pray for us. It's an eternal gift and a blessing bigger than we realize. So, thanks for lifting us up while we were gone and continuing to be who you are- the Body of Christ.

We are so thankful for all of the prayers, notes of encouragement, material blessings, and hugs (cyberspace and in-real-life) we've received from our brothers and sisters in Christ.To all who prayed for direction and guidance in regards to treatment options- God answered in amazing ways (does He ever do it differently?)

We knew we needed the week to be away, but we also had a lot of praying to do and decisions to make. It took until about Thursday before we stopped pretending nothing was wrong and really buckled down; making phone calls, following different leads we had gotten and calling numbers people had given. On the trip home we spent a lot of time on the phone and God opened a lot of doors, confirmed, and allowed a lot of things to just fall into place. It was like dominoes.

Jordan called me when I was running errands a while back; I think it was the 3rd day after his first gut-wrenching chemo treatment. He told me he was done with chemo. He wasn't bitter, he was just matter-of-fact. I supported.

It's going to take a miracle of God for Jordan to live past 24 months. Does he really want to spend that time throwing up, losing weight, losing hair, and feeling incredibly ill? But are we really okay with not using any of the God-given resources available and not fighting this? I should say I hesitantly supported when he told me he wasn't doing any more chemo. I am not okay with doing nothing. But we aren't doing nothing. We're praying our hearts out; and prayer is huge.

Long story short, and many prayers later- we are traveling to Mexico next Monday for alternative cancer treatment. We're still learning the scientific technicalities but, basically this treatment regimen uses the pre-programmed disease-fighting cells in your blood to create a customized 'cancer vaccine'. They'll change his diet drasticallly, boost his immune system in every way possible, and create a climate in his body best suited for fighting cancer. And he'll still do chemo. But on a much lesser, body-destroying scale. He'll be getting it in doses that are about 10% of what his treatment would be here.

For those of you interested in more information, click here for the website. For those of you who like to look at pictures, click here for pictures of where we will be staying for the next 4 weeks. For those of you who pray, please continue!

Sunday, August 16, 2009

That he would grant you, according to the riches of his glory, to be strengthened with might by his Spirit in the inner man; That Christ may dwell in your hearts by faith; that ye, being rooted and grounded in love, May be able to comprehend with all saints what is the breadth, and length, and depth, and height; And to know the love of Christ, which passeth knowledge, that ye might be filled with all the fulness of God. Eph 3:16-19

We're on vacation! Praise God!

I've been thinking of this prayer in Ephesians that Paul prays for his brothers and sisters in Christ.

We went to the cancer center on Friday to have Jordan's blood drawn to see what his levels looked like and if the medical personnel would give him the go ahead for being gone. The concern was that he would be away during the period of time that cancer patient's blood levels usually dip dangerously. All of the counts were fantastic and his white blood cells were up from last time! His pain level has gone down and his appetite is back. With thankfulness, we're giving God all the glory and thanking our "Aarons" and faithful prayer warriors for lifting us up.

But that doesn't mean you can stop. We need prayers for wisdom and discernment as we seek God about what treatment to pursue and how best to help Jordan's body fight this disease.

We're in the Ozarks so if we don't update for awhile it's because we're relaxing, boating, swimming, having a blast, and thinking about how much our Father loves us.

Thursday, August 13, 2009

Thursday, August 13, 2009 5:33 PM, CDT

First off I just want to say thank you for all the love and support that I have gotten. I am constantly overwhelmed by the number of people lifting my name and my girls up to the throne room. As I opened the various cards today that I received in the mail, I reflected on how much God loves me. He spared no expense when He chose to redeem me. He who gave us His son why would he also not freely give us all things. I have thought often of John 6 since I found out about my situation. Jesus had given a number of "hard sayings" and from that point a number of his "disciples" stopped following him from that point on. Jesus then turns to his disciples and asks them if they too are going to abandon him when times get tough. Peter, never lacking a quick response replied with with the right answer. Lord, to whom would we go?

As I encounter each day and am tempted to complain and be defeated, and give up, I think of what Peter said. Lord, where else could we go. You have the words of eternal life. Never in my life have i relied so much on the promises of God and His love for me. People tell me often how they are thinking and praying for me. I then think of the Father and how his thoughts towards me are innumerable. They are more than the sands of the sea. Ephesians tells us that we are God's masterpiece, his poema, created in Christ Jesus unto good works. No matter what happens I know that God is working this for His glory. That has been the prayer on my heart and Katelyn's heart from the beginning.

I trust that as you visit this site you will be encouraged and your love for the Father will continue to grow. There is no other name under Heaven, whereby we must be saved. He is the way, the truth, and the life. One of Katelyn and I's favorite verses about the Father is Romans 15:13 Now may the God of hope fill you with all joy and peace in believing, so that you will abound in hope by the power of the Holy Spirit. I will cling to these exceeding great and precious promises as I seek to glorify his name. Who else could we turn to? I trust that I will be healed and that God will touch lives along the way. Jesus came that we might have life and have it more abundantly. I pray that each one of you will seek for that abundant life and that your joy may be full in Jesus.

Wednesday, August 12, 2009

Ninety-seven hours since launch date and the number up by the orange heart reads "2237." That's about 2.6 0.4 visits per minute. (edited with the correct number because I know my dad reads this and he'll notice. my math skills are very fallible.) If this wasn't about my husband with a terminal disease, I'd feel like a celebrity.
It's actually not that accurate. By the time I was done setting this up, adding the first entry, and editing the guestbook, the number was 6. But hey, it errs on the generous side, and if it makes us feel good, I'm not going to complain.

Thank you dearly for all of your entries in the guestbook. We read them all. I especially especially love it when people say they are praying; preferably along with words like "often" and "constantly." I was just advised by a dear friend to be patient with the people that say things, but don't say the right thing. Not everybody will say what I need or want to hear, so I am to be aware, be prepared, and purpose in my heart to handle the situation in a Christ-like manner. I was thankful for the advice. It sounds so easy.

To you, my readers, here are my thoughts on words of encouragement- and please do not let this in any way hinder you from signing the guestbook. As stated, we read them all. We appreciate them all. I'm somewhat of a pragmatist. I also firmly believe in the power of prayer. If I hear that you're thinking of me- that's nice, but if the thought doesn't turn into a petition at the Throne, it doesn't accomplish anything for me. Nonproductive. It doesn't even encourage me. Because the last thing I need is more thoughts about me. I have plenty of those all on my own.

We need prayer. I know this like I know the ache in the back of my heart. And that's the most you can do for us. It might be the least you can do in your mind, but in my mind, it's the most. Spending your valuable time standing in the gap for us and petitioning for a miracle of healing at the feet of our Heavenly Father is an awesome gift. From the bottom of our hearts, Thank you.

I struggled with starting this site. It seemed somewhat sappy and morbid and sad. CaringBridge is for people that are curious about people that are dying. The only people I've heard of associated with CaringBridge are now dead. I had a conversation with my mom when I was wrestling with the idea. Why? Is it because they want to know all the details? Isn't it enough to know that it's horrible and crippling and deadly? Is it because everybody dies, and seeing how someone they know (or kind of know) approaches death is intriguing? We'll all be there someday, so we want to ponder the journey of someone else? Sad events are big news. Everybody likes a good news story. Solomon said it is better to enter the house of mourning than the house of mirth, but I always thought people would choose SixFlags over a funeral any day. Is it cleansing, good for the soul, therapeutic to enter into the grief of another? Maybe it takes our attention off of ourselves. Maybe it helps add perspective to the day-to-day annoyances, irritations, and big decisions that really aren't that critical when the eternity of souls and the realness of pain are a little more forefront in our thinking. I'm probably biased, but when it's someone as young, handsome, strong, and amazing as Jordan, it just makes it that much more tragic. He's 24. He has a young wife and 2 beautiful girls to provide for; he has so much life to live. What is it that makes that orange number leap up every time I check? I don't know. I do know, however, that I used to go to Tyson Aschliman's blog. I'd cry every time, and then I'd pray for him and Leslie and TJ. ...and sometimes I wouldn't.

So, I write. Because if we stay on your minds, we may stay in your prayers. I update not because you need to know, but because we want you to know how to pray. If you care enough to come, you're more likely to care enough to pray. I've surprised myself with how often I've updated already. But that number is so beckoning. If i've got an audience, I've got a piece of your attention, and I just may get a piece of your intercession. I also put the photo in the entry every time because I appreciate the entertainment value of looking at pictures and I'm trying to take advantage of the advertisement factor of putting a picture into your head. More memorable.

It's all very selfish, really. But nobody blames a drowning man for scrambling for the lifejacket.

Tuesday, August 11, 2009

Tuesday, August 11, 2009 11:55 AM, CDT

So, I'm not going to lie; "Yesterday was hard" is an understatement.

Nothing they didn't warn us about beforehand happened. Nothing we hadn't heard and nodded our heads to in response. Nothing we didn't 'know' about already became our reality yesterday.

But there's a big difference between 'knowing' - "I understand the context, syntax, and meaning of the sentences being spoken to me" and 'KNOWING' - "I'm spending the seconds and minutes of my day in completely foreign territory- unfriendly, rocky, emotional, watching-my-husband-puke-his-guts-out territory."

My thoughts are pretty jerky. My prayers even more so. Everybody in that treatment room was old. I watched those clear bags hanging from a pole on wheels slowly drip down into those clear tubes that ran down and around and up into Jordan's chest. "There go the rest of our children." "There goes a normal marriage." "There goes all of our happy plans."

And yet, still I hope. As if I can't help it. For the creature was made subject to vanity, not willingly, but by reason of him who hath subjected the same in hope, Because the creature itself also shall be delivered from the bondage of corruption into the glorious liberty of the children of God. Rom. 8:20-21
We are designed to hope. Subjected to it. I hope in the "God of hope." I hope in the God of the Old Testament, win-a-battle-with-just-two-guys God. I hope in the God of the New Testament, "Lazarus, come forth!" God.

I have so many more thoughts. I'm learning a lot. I think.

When Lexi came by with her amazing gift there was a journal included. Jordan and I both decided to write in it through all of this. I have prayed about sharing what goes from our pen to that paper on this site. It scares me, but God asks a lot of his children to do scary things. Joshua comes to mind and I receive God's assurance along with him; "Be strong and of good courage."

This is the first entry. It's Jordan writing. His entries will be in blue. I just decided that right now.

7-25-09 According to my earnest expectation and my hope, that in nothing I shall be ashamed, but that with all boldness, as always, so now also Christ shall be magnified in my body, whether it be by life, or by death. For to me to live is Christ, and to die is gain. For I am in a strait betwixt two, having a desire to depart, and to be with Christ, which is far better: Nevertheless to abide in the flesh is more needful for you. And having this confidence I know that I shall abide and continue with you all for your furtherance and joy of faith. Philippians 2:20-21, 23-25. I obviously look forward to heaven but I feel it is more needful for me to be there for my girls. I believe God has a life-long of Kingdom work for me. He has given me the gift of faith and more than anything I desire His name to be glorified- not to me, but to Your name be the glory, whatever the circumstances. I love You Lord and am full of hope.

Sunday, August 9, 2009

July 15- I remember just in time to call Dr. Schock's office in the afternoon to make an appointment for Jordan. They had an opening for the first slot the next morning but I scheduled it for the morning of the 17th because he had forgotten his phone and I couldn't double check with him.

July 16- As soon as the office opens I call to try to get him in for the appointment that morning. We're there within the hour. Blood samples drawn and an MRI scheduled for the 24th.July 20- Dr. S. calls Jordan saying the blood test for rheumatory arthritis came back clear. Methodist calls saying they have a cancellation and we can come in for the last slot that night for the MRI.

July 21- Jordan gets a call in the morning saying that the MRI showed a growth in his back. Biopsy scheduled for the 23rd. My phone isn't working except to text. I get to my neighbor's phone to hear from Jordan. This was hard. Jill came over to give me Jesse's cell for the day and take Jaycee for me. I got out of the house later and just stayed with Jill for the day.

July 23- We find out that the spot is about 4x3x2 inches, it's on the back of his left sacroiliac wing. Biopsy goes well. Dr. Chee took 12 samples; he usually takes 4, making sure we wouldn't have to come back for another biopsy. Jordan reacts to the sedation medication with a fainting spell and vomiting. He's a little out of it also. We're told one of the samples looked like lymphoma. Another one didn't. Good news: lymphoma is very treatable. Lymphoma is cancer. I can't wait to get out of the car and into Jill's so I can cry.

July 24-27. Terrible horrible waiting. I call the doctor's office every day. The fact that I'm annoying does not bother me at all. Dr. Schock finally personally calls my cell phone to assure me that everybody is doing their job as quickly as possible. The tests they're running the laboratory take several steps and a lot of time. He is calling to the lab every day. My cousin Lexi comes over to bring an amazing gift and chat about nothing.

July 28. Call from Dr. S. calls. Preliminary findings: malignant small round cell tumor. It's definitively cancer. What kind? What to do? We don't know. Oncologist appointment scheduled for the 30th.

More horrible waiting.

July 30. Dr. S. calls. They think it's Ewing sarcoma. Oncology appointment. I interrogate the doctor. We don't get to go on vacation. Jordan's mom and my grandma take notes. Nothing is very definitive because he doesn't treat sarcomas. EKG, mediport, and PET scan ordered.July 31. We see the sarcoma specialist at Illinois CancerCare. I am encouraged by her hopefulness and the fact that she won't go ahead with anything until she gets a definitive second opinion fromt he experts at Harvard. She's had a few adult Ewing sarcoma patients in her practice that she's treated. She wants us to go on vacation. An appointment scheduled for the 7th with her nurse practitioner to go over all the results and the treatment plan.

July 31-Aug 2. Will & Lexi, Matt & Kirsten and U.Rick & A. Carol send us on a weekend to the Indiana Dunes. We relax, have fun try not to think, and are super blessed.

Aug 3. EKG

Aug 4. PET scan.

Aug 5. Mediport placed. More blood samples drawn.

Aug 6. Call Illinois CancerCare in the morning for PET scan results. "They don't have anything." But they need Jordan to come in for more bloodwork. Nevermind, they don't need bloodwork but the Dr. wants to see him. He calls to let me know and says I can come, but if it doesn't work don't worry about it. Nevermind, they want me to be there. I keep getting sick to my stomach in waves. Jenny Schick has almost left the pool when I run over to ask her to watch the girls. Everything is fragmented. "We're waiting for the blood results." "They agree with the diagnosis." "PET scan results very abnormal." "Multiple metastases to both lungs." "Stage 4." "Noncurable." "Worse than we thought." "Some patients live 2 years." I can't think right. I can't even walk out of there right. It's all jilty and stiff. We hug in the parking lot but don't really cry. We have to get back to the girls. I only cry after I try calling both my parents on the way home and can't get a hold of them. And then I sob.

Aug 7. Teaching appointment with the CNP about chemotherapy. Scheduled for Monday. It'll take about 5 hours. Next treatment is in 3 weeks in the hospital. It'll take 5 days. We may not get to go on vacation.

Saturday, August 8, 2009

As some of you may or may not know, Jordan has recently been diagnosed with a rare form of cancer known as Ewing sarcoma. I just created a CaringBridge website. I'm updating both the blog and the web page at the same time. Here is my very first entry over at copied and pasted into our blog:

I can't believe I'm doing this. We actually have a blog. This reminds me of our blog. Just this one is for sick people.

I hope to update this site and our blog simultaneously (thank you copy-and-paste). Some people know of our blog, some don't, some people know of Jordan's illness, some don't.

Selfishly, I'm trying to rally as many prayers as possible because I believe in the power of prayer and we are in need of a miracle.To clarify and make sure that there's no misinformation going around I should start out with a brief timeline of what's been going on with us of late. It shouldn't take that long; after all, it's been less than a month since I called the doctor's office to make an appoint for Jordan per request because his activity level had been decreasing as his pain increased. But it all seems like one very long nightmare and I don't want to right now.

Suffice it to say, it will take a miracle of God if Jordan lives longer than 24 months. So, that's what we're asking people to pray for. We're claiming the promises of the "peace that passes understanding" and the "joy of the Lord as our strength." I'm very willing to forgo feelings of peace, rest, hope, etc. I actually don't want a feeling, I want a miracle.

Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. Phil 4:6

As you lift us to the Throne, let your request on our behalf be for a miracle of healing in Jordan's body. Thank you.