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.

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.

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 http://www.caringbridge.org/visit/jordanschroeder 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.

Not Me! -Summer edition

Wow! It's July 6th! And since the last time I posted many things did not happen that are very noteworthy and also chuckleworthy that I would like to tell you about. But I did not forget all of those things and so I am not trying desperately to remember anything funny from the last 3 months that I can share with you. I am not trying to do this simply because I love the new "Not Me" logo...

I did not get all the way through the check out lane and loaded back into the cart at WalMart with all of my prospective purchases and then realize that my wallet was at home. No, no, no- that was not me- because I might be in denial about how many previous times this has happened.
This does not happen on a semi-regular basis.
I also did not let my child lick peanut butter off of the table knife before, during, and after making PBJs. Sticking even un-sharp knives in children's mouths is not exemplary, therefore I do not do this-
on a regular basis.
My child was not found out on the balcony fully to partially naked riding her scooter, eating her lunch, shooting the squirt gun, or just yelling "HI" to everyone who happnes by. I am a mother who believes in decency and therefore I do not let, endorse, or encourage this behavior-
on a regular basis. No, Not Me!
I am not loving summer simply because it's warm, the pool is close, and the exceedingly delightful discovery that swim diapers can be rinsed, rung out, and reused. I do not pull off, rinse off, ring out, and put back on my delicate-skinned babies chlorine and urine soaked swim diapers!
No, especially not as the usual course of action! Not me.
Finally, I am not totally procrastinating absolutely all of my household chores as I write. This absolutely never happens on a semi-regular, regular, or dare I write-
daily basis. Nope. That is not me! Definitely not.

So, what aren't your habits?

And just for fun- some photo love- nevermind- it is NOT I who can never quite figure out how to upload pics to Blogger without wasting a bunch of time. ARgh! Not Me!

Not Me! Monday

So, things that did not happen... at all.

We did not ride an elevator as a family, exit the elevator, and then turn around to see the elevator doors already closed & an uncertain wail coming from behind them. At least our younger daughter (in the stroller) made it out.
In the same spirit, I did not walk into a store ahead of Jaycee, begin to grab a cart, and look back just in time to see the automatic doors slam into her bewildered-looking face. At least Arawen was safely in the cart. Also, a 2-year-old's body is enough mass to make automatic swinging doors open back up again. Just so you know. NOT because I would know anything about it.
We did not enter a restaurant, the door did not close behind us, and yep, you guessed it, Jaycee was NOT staring at us through the glass on the other side. Hey, Arawen made it. All 3 of these incidences did not occur within the span of 2 weeks.

I did not only 'let' but invited & prepared the opportunity for my child to 'wash dishes' in the kitchen by herself. I did not have full & complete knowledge that this most certainly would end in a huge wet (but clean) mess. This did not keep her very delightedly occupied for a long time. That was NOT my intent.

While at Panera (this time Jaycee made it into the building), Arawen was not placed on her back on the (very slippery) leather bench we were sitting on. She also did not squirm herself right off said bench onto the floor & under the table. This of course did not happen because she was lying right next to me. She did not cry profusely. When I went to dive after her, my shoulders did not get wedged between the table & the leather bench. I, therefore, did not find myself in a very awkward position, bent over, butt kind of sideways & up, comforting my baby under the table, only able to lift her about 12 inches off the floor. Jordan was not very bewildered at why I couldn't just end all of the embarrassment & surface with my quieted child. He did not eventually have to bend over & under on the opposite side of the table & take her from me. At this point, both of our butts were not facing directly towards everybody else in the restaurant. I did not consciously avoid making any sort of eye contact with all other patrons from then on, because of course, NONE of this happened. Nope. That was not me!

There were other things that I recall not happening... diaperless children...making dessert on the floor...trying very hard to convince myself that crying children go back to sleep on their own...forgetting coats at church.... but all of that cannot be expounded on right now. It is high time to be off the computer, considering that Jaycee did not use her stacking toys (the kind with HOLES in the bottom) as cups...for milk, try to feed her little sister raisins, and Arawen did NOT just puke all over me.

"Not Me" Monday

For all of those who are about to read this post- before you do, please pray for MckMama's baby Stellan. His 5-month old heart is failing.

Monday! This is becoming my favorite day of the week. I get to remind myself of what a good mom I am & revel in this upcoming week that hasn't yet been harried, dirtied, disheveled, clumsied, or generally lived in. Yet. On the other hand, LAST week, well, that week got lived in & many things did not happen.

I did not call my brother and ask him where he was only to hear my husband's voice telling me he was right next to me. That was not me.

My daughter did not wake up in the 8:30-9 a.m. range every single day this week except the morning after I had irresponsibly stayed up 'til midnight. I did NOT drag myself out of bed, put a bowl of grapes & a granola bar in the living room & then go back to bed. Um, yeah, whoever that groggy-eyed zombie was, it certainly wasn't me!

Throughout the week, my nearly-two-year-old-rapidly-vocabulary-expanding daughter did not refer to me as "Babe." She did protest impatiently "Babe! Babe!" when I wasn't paying attention to her (which never happens). She did not call expectantly to me from the bathroom when she was done "BA-ABE!" I did not find myself yelling back: "I AM YOUR MOM! YOU CAN CALL ME 'MOMMY'!"

I did not throw all of the couch cusions onto the floor for an indoor jungle gym for Jaycee to play on. Jaycee was not half dressed. It was not super fun & I did not take a video of it. While videoing, I did not ask her what was on her bottom because I wanted her to talk about 'wonder' (underwear). She did not proceed to go through the rest of her bathroom vocabulary & I was not trying to keep my heaving laughter quiet so it wouldn't ruin the video.

I did not find myself explaining to my husband the difference between 'clean' & neat' when he came home from work one day & the house was a wreck but all of my carpet & furniture (including the cushions laid out on the floor) had been cleaned with a carpet cleaner. I am not very grateful to my good friend Jackie for letting me borrow it. After 3 days of going over every room in our apartment, I do not hope to be a proud owner of that thing one day! It also did not do wonders to a certain ketchup stain that did NOT happen.

I positively, absolutely did not become so engrossed in a radio program & my task of slicing oranges that I failed to notice my daughter trying to crawl up the front her highchair. She had not already placed her bowl of scrambled eggs & ketchup on the tray. The result was NOT a crying child with a highchair on top of her in the middle of a huge eggs & ketchup mess. I was not just 3 feet away! AND, I did NOT proceed to scrape up the eggs & put them back in Jaycee's bowl! AND I did not take pictures while she tearfully explained to me "faaaall." And there is most certainly NOT incriminating evidence against me!

We did not get to go see 2 babies yesterday. I did not forget to bring fresh batteries. Who does that when there are adorable, beautiful, gorgeous brand new babies to photograph? Not me! I did not have to take pictures with my phone and/or borrow some batteries so I could capture these awesome shots. I am NOT super excited to feature on my blog:

Adelai Aever Guingrich

(She & Arawen are 3 months apart & they are already best friends. They don't have a choice because I am NOT the kind of mom that picks her children's friends for them.)

The other amazing miracle we went to see AND I am not an incredibly proud aunt to is:

Jonah Ray Getz
I am NOT biased & I do not love this picture. This is not Arawen's favorite cousin because I am also not the kind of mom that chooses favorite cousins for her children. There also is NO reason that the babies featured here are photographed with my children. I do NOT think that a picture of a baby is awesome, but a picture of a baby & one of my children pretty much doubles the cuteness. I am NOT proud like that, and as said before, I am not biased. There is also no reason that only Jordan's arms made it into these photographs. That was NOT on purpose.

MckMama, the originator of "Not Me!" Monday has a very sick baby in the hospital right now with a racing heart beat. You don't have to go over there & read her blog, just say a quick prayer lifting baby Stellan & his family up to a God who heals.

Feel free to enjoy the "Not Me!" below & have a blessed week.