Let us add to the week ER

Today I just thought I would be getting some fluids but it looks like I was put into the ER instead. I should've went to days ago but dr wanted to make sure nomething was broken. And the hemorrhaging brain would've just gotten worse. So that leaves fluids which I did not get and two days after a seizure which is typically my downtime. 

And Angel I love this morning called to check on the send off for anything we wanted. I said I have to leave in an hour and a half do you watch my kids. She happily did and even give them lunch. We were a little leery about leaving them with their past mistakes but we were going to go with it! I came home to happy children and sat in the back yard for a little while and then realized I needed to sleep. That was four hours ago and already for bed. A lot today especially at my family.

So the only way I can do this is by voice chat so if something doesn't make sense I'm so sorry I'm trying really hard. Siri is actually a lifesaver. 

A Megs Scoop of that faith

What an exciting night at Waldorf.   Those letters look very odd and wavy and strange. No folks a true, legitimized, honest to God, fall.  Neck hit, head hit and down I went. Seizure the day before, fall the next day. The hardest scariest was see my hand and mistaking it for skips hand! I screamed several feet away ‘’skip, you re hand, tugged it then realized it was MINE! Everything in right side went to instatnt pins and needles. Complete weakness the right side. So all these weeks PT goes swishing down the toilet.  And because it has literally taken me over an hour  to write I just cant anymore  we celebrated our 17^th  anniversary and valentines Day! Think we are on the mendEEE. I love you all happy v-day!

Seizure Free for 3 weeks! SIKE!

So far, so good. Skip and I are without flu and girls are feverless, but not coughless. So the germ fest continues. I wish I were strong enough to Lysol, bleach and scrub my house but I actually have felt a lot weaker this week and my right side is much weaker… 

…oh that was ,”you’ve got to be fuken kidding me! I need Ativan.” A seizure all because I was bound and determined to make my hand hit the letter “I” on the computer. It has been 3 weeks today since my last. Sigh. Let’s just keep pouring it on top of the already crazy week.

“Lord if you are willing, you can make me clean.” Jesus reached out and touched the man. “I am willing,” he said. “Be clean!” Immediately he was cleaned of his [cancer].

Matthew 8:2-3

I’m going to cut this short my arm needs a good massage.

Did She Fall Off The Earth

Sorry, for the people who check in daily, hoping for an update, its been a rough two weeks.

Two more weeks and no new chemo medication but it was supposed to arrive yesterday, then today, but not likely. I will not bore you with details but we have been on the phone daily with CVS and UHC. Good fun. So the girls have the flu. Nothing like a 2 week vacation. Unless of course one of us gets it and that, would just be bad, very bad. So now we are all on Tamiflu. We never had valentins day, my  favorite and Alana is going to miss market day. She worked soooo hard on her little shop. You know, maybe we can sell them for real to make up for it!

So every 4 weeks we will be hanging out in Santa Monica! There are a few people we need to meet up with out there. Team Jimbo and the famous Dean Collins. Let us know what works and we can shoot for dinner dates, otherwise I believe our repeat scans are spring break and hoping to take the kids from SF to Hollywood (that’s actually the only reason they want to go CA) drive some of the ocean front, and Pier Park. Maybe even a day or two at Disney. That’s all here nor there. Hoping we make it to Tybee next week, we could sure use some fresh beach air. It is private, beautiful, and hopeful.

Lastly I briefly mentioned a study I was going to do, then not do, and that’s when the flood gates of hell opened. Two children with 102 fevers, one vomiting, one passing out, a crashing hard drive on skips work computer, 6 doctor appointments, multiple trips to cvs, and thank God for the angels he puts in your life when you cant bear anymore. I was on my second to last day of my study. She talked about life being like seasons of training for a race. There is a finish line, and I started seeing it in random places, thinking this study is my finish line. And then I knew something was up when a staff friend emailed me out of the blue, about how I was running the race and she does not believe it is over. But maybe this season is. She mentioned do not fear, and my daily devo had Psalm 23 in it. Instant confirmation that I should.

Anyway, at peace. Almost no response with right side, its so weak, but as I have witnessed just walking through infusion, it could be worse. Had a blast laughing with my doctors yesterday and just grateful for another day.

All part of grander plan

All part of grander plan.

Well lets try one handed typing before the letters LMNOP are going to spawn a seizure. That is all we need on the plane. So I guess your not reading this for entertainment purposes, but for results.

Ive been praising God, so thankful, as the systemic results were immediately given to us. It was so cool to get numbers same day. Dr. K drew about 20 viles of blood, some to send away, some for comparison purposes, and some for Tuesday. Then they took 22cc of CSF splitting them up for testing. Never even dreamed theyd come back but the preliminary the LM had continued to be gone. No cells are present and my pressure is perfect. Then they say my ALT is 18! What!!! That is by far my lowest my liver enzymes have been. Tumor Marker say no way, but with God nothing is impossible. My TM was the lowest by.3 since we started this ordeal, but the most significant change was in 9 week of taking XELODA they went from 300 to 53! FIFTY FLIPPIN THREE!! Normal is 20 but we will take it!

We left in shock and went off to a brain MRI, 90 minutes early but whatever. The next morning I woke up praising God, praying for friends, and for the scan. 9 AM couldn’t come soon enough! We would get the results and devise a real plan!

Then I heard four heartbreaking words, “your scan is worse.”

Okay, worse how did’nt dawn on us until this morning but the things we discussed the day before were now wihout a doubt the plan.

1.     labs in Atlanta weekly

2.     fly to LA once a month

3.     all scans will now all be done in LA

4.     I will start a hormone therapy asap called

5.     Xeloda is dropped or cut down

6.     Start Everlimus chemo pill that should get into brain better than xeloda

7.     Two antiflammatory drugs one herbal and another for the edema in the brain

Good news is that we don’t have to live there for now. We talked about a study but doesn’t benefit me but I want to do this to help them understand science.  That is all I can say there. 

“This is where the healing begins, this where the healing starts, when you come to where your broken within, the light meets the dark.” Just played on my iphone. May my heart not doubt. My field wilted and I took several steps back. Its still straight, but saddened. I know there are a million ways we could’ve done it but so far we are 17 months closer to a healing when all said impossible. My heart has changed over the last 5 weeks. I am more peaceful. Not wanting to be so controlling but let some things go, I must. I watched Bad Moms on the plane and there is a lot of truth to storyline. How often do we want that perfect birthday party, class cupcakes, the perfect outfit for picture day? With all we have going on people are lucky if we rsvp!

We are home now and slept until noon. Guess im wiped out. Have lots and lots of calls and appointments, research, and scheduling to work on so I’ll check in later. Lots of drugs to order! And no not those kind though there is an uber type app that had us in awe.

So too tired to do this. Love to all. Thank you for continued prayers!!!