Significant Novembers...

Every day I wake I have a joyful tear that rolls down my face because I get to continue to look my son in the eyes. I am more than thankful. See this time last year, I thought I was going to be headed down the path so many I know have already taken...and we had to jump onto a rollercoaster I didn't give permission to be on. You can read about that journey starting here. 

On the 2nd of November this year, Rick & I celebrated 16 years of being back together...that's another story for another day. No, not our wedding anniversary but being back in each others lives. It's also the same week a year ago that our son came to me to ask why he had a hole in his head. As I type this, my chest fills with pressure, and then I have to remember...we're not in that storm anymore. We have not only survived the storm, but we are Thriving! Only because of the precious mercy & favor of our Lord whom has given not only K (our son) a significant  & remarkable recovery but us a story of how faith moves mountains. As I've went through the pictures of this last year...wow, just WOW! 

We were loved on by so many people even strangers who didn't know us personally. We were allowed to "know" when the suggestions by the medical teams were not the road we were to take. Thank God, we listened. We now are on a peaceful journey of yet another hope, and by God's creation we are seeing life altering miracles daily. We are utilizing the organic compounds of what was given at the creation of the world, we will continue to do so with such fabulous results, and we are learning to love some new terminology I want to call "PMS" (Phenylpropanoids, Monoterpenes, and Sesquiterpenes). 

That is because this combination offers the following:

First, you clean the receptor sites allowing the proper transfer of hormones, peptides, neurotransmitters, steroids, and other intracellular messengers. (The Phenylpropanoids do that.)

Second, you deprogram or erase the wrong information from cellular memory stored in the DNA. (The Sesquiterpenes take care of that.)

Third, you reprogram the cells with the correct information so they can function properly. (The Monoterpenes do this.)

We are headed down a new road of epigenetics: the study of heritable changes in gene expression (active versus inactive genes) that do not involve changes to the underlying DNA sequence — a change in phenotype without a change in genotype — which in turn affects how cells read the genes.

We were perfectly made...and made with a body that wants, can, and will heal itself if it's just given the "conditions" in-which to do so. Faith...comes by hearing the Word, and on that Faith we build our trust in The One that has directed us down this path of unknown, but so so full of peace. 


Here's the few things he got to do for the first time in his life since surgery on May 8th...
1) ride the tallest (for us) ferris wheel in Branson, MO twice
2) caught his first bass & learned how to fish for them
3) got to see the solar eclipse looking thru a homemade cereal box
4) attend a hot air ballon show & get into the basket
5) he gained another brother-in-law
6) he got to build a dinosaur at build-a-dino
7) attended Science City twice in St. Louis
8) got to ride in an airplane
9) ride in a rental car
10) ride in a trolley
11) he started middle school
12) had the biggest personal firework show in our driveway
13) jumped over into men's shoe sizes
14) off all prescription and OTC medications
15) use dad's table saw
16) had his oldest sister here for weeks instead of days
17) shattered his Ipad (we're doing great without it)
18) got to see baby mice practically be born
19) got to help tear down walls in our home remodel
20) learned how to make homemade soap, scrubs, deodorant, body butter
21) learning how to be a barista at school coffee bar
22) An all day around KS waterfall tour
23) Participate in burial of great grandma's ashes
24) Participated in our church parade 
25) has a thing for girls...Lord, help us!

All is wonderful in the world, until you get the news...

3D Imaging so they could order the implant

We got to learn some new words

The puzzle piece (hole) that will never mean the same 

Helmet to protect the exposed Transverse Sinus until Surgery.

Twins...shaved for surgery

Day after surgery

Day after surgery

Day after surgery: Out comes drain tube

The implant

1 month post op

His first Bass! We were all proud!

Now

I want off this ride...

...as much as I love rollercoaster rides especially the twists, turns, flip upside downs, and speed; this ride I want completely off. I don't like any of it, as it is literally making me sick to my stomach to the point of needing the trash can. I'm ready for the ride to stop but apparently it has no breaks, no leveling command, where the heck is the end where we slow down and are on a more level equilibrium? This has been running only for the month of November, and we're not done with the month nor are we done with doctor appointments which means there's even more information to process. I'm trying very hard to be the little train that could...I'll not lie, it's hard as hell right now.

If it wasn't for the enduring friends/family in which have embraced us during this time in prayer, text, cards, calls, and just loving on us; I couldn't do it. One sweet friend said something very true to me right before we got so many tests/results, "for you 6 weeks has proven to be an eternity". So much happens in 6 weeks for us...so I'm believing in a "rest period of confidence in a plan" to be coming real soon.

If it were just one thing...it would be more than enough. We've got the stuff going on with the house (which I'll update that at the end of this), we did the CT scan, we did the PET, and last week we had the MRI and Neuro/Plastic surgeon appointments. Here's my update on FB regarding the Neuro/Plastic appt:

"Here's just a summary, this is not a definite plan because we have not taken all the information to the NF specialist's in St. Louis. If it was up to the neuro and plastic surgeon's: we will be having surgery to fix the skull (the material in which they want to use we are not happy with...thankfully there's other options). Here's the negative...they cannot fix the skull without removing some of the tumor (up until now; it has been highly suggested not to touch it surgically and many have refused to because they grow back and the risk of location). They promise they will be no where near the carotid (in which this tumor engulfs and deviates). This type of tumor also will most likely have a lot of bleeding...so 2 hour minimum, but depending on the amount of blood could be up to 4 hours. They suspect he will have to have a blood transfusion if not a massive transfusion. I'm sick to my stomach writing this. This tumor has entwined itself into the skin, so this means there will be a removal of skin/hair and a skin graft done...so no more hair, etc on that part of the head. :( We had the good news that only a minute tumor tendon has actually grown into the brain. The brain is significantly protruding out of the hole, as we even have seen more fullness in the last 24 hours. There's other details on the written reports I picked up today and read as we drove home that has us very concerned; but because we have not yet talked to the oncologist about the MRI results from yesterday, I will not go into detail regarding that. I've not heard from her today, tho having left a message and email....I'm assuming I'll not hear until Friday. So until I can explain more; please have the best Thanksgiving day you can. Thank you all so much for following, praying, supporting, and loving us. I'm going to enjoy my family and be ever so thankful that I have a family present & to enjoy. Thanksgiving has a little different but deeper meaning this year outside turkey, parades, games, drinks, and pies. #nfsucks #iknowafighter #endnf"

So...the MRI results; stable, lol. there are many inconclusive things that have been told to me today by our oncologist that must be cleared up through the radiologist. She promises to call tomorrow with that info as she's on vacation until then. She emailed me on Thanksgiving with some of the "stable news" which I find to be awesome to have that kind of bedside manners and care for her patients.

Here we go...He now has a total of 9 lesions on the brain, 2 of which are new (located at the left and right midbrain), and 2 that have grown significantly bigger (these are located at the left superior quadrigeminal plate and left posterior globus pallidus), there is a "disappearance of flow" in one of the draining vessels (on the actual report it says: roughly no flow signal in the adjacent distal transverse sinus at the junction with the sigmoid sinus and there is miniscule flow in the sigmoid sinus). She believes this is to be blood clotting. (What!!??, I have to wait until tomorrow about this?) The PN (Plexiform Neurofibroma) which is the large tumor that runs from C2 around left of neck engulfing & deviates the carotid and deviates the pharynx...now engulfs the jugular. It thinks it's the boss and can own and violate everything, I guess. We also found out that the putitary gland is flattened. (what the heck does that mean?) No...searching the internet is very very dangerous for emotions, the brain, etc! Medical terminology...I'm gonna have a doctorate degree before this is said and done! Just keep swimming, swimming swimming!

Along with this stuff...Koda is being referred to the NIH (National Institute of Health) in Maryland for a clinical trial in hopes to shrink this mass that is being so destructive; that the oncologist has now stated it is in a dangerous state. :( Thank God we're not dealing with cancer too on top of this. So we head out tomorrow with all the reports and scans to face the NF team in St. Louis; this new stuff and to plan surgery for the skull reconstruction that the dang tumor eroded.

So on a other note, I have fabulous news...someone has paid the attorney the $450 so we can file the motion to borrow for the house. I have no idea who did this, but we have a signing appt with the attorney on December 5th to file it. Now it's in the hands of God and the trustee if we'll be moving or staying. Isn't that fabulous?! God works wonders and in mysterious ways...again just part of the rollercoaster ride.

So until tomorrow...you've been updated!

Day 4: God will move you...

Today was so much better. Woke up to wonderful words...Thank you all so much for the prayers, texts, emails, pm's...of prayer, encouragement, and acknowledging that the post I do here are touching lives.

Guess what??? The email came through this morning with the application for the home I spoke of yesterday. While this home is in need of some help...we have a stirring within us that it's ours. We've discussed all we will/could do. We just might be homeowners again (it's been 9 years since we owned our home) if it all goes through. We let them know today we were interested and would be sending the app & app fee as soon as they let us know where to send it; so we're now awaiting that info.

I have so much more to disclose but that'll all come at the end of this 30 day journey because it could end several ways. I can't disclose everything right now because there's things that could get turned really upside down...so be patient; and enjoy this journey with me.

We did go look at another home today; it's a NO! We've put more on the list to look at just in case. I've asked in my prayer time that if the place we're applying first isn't the place best for us to give Him glory then please shut the door, so I ask the same from you.

Other than that; I packed up some glass vases that I have and dug out all the totes from the garage. I decided I wasn't leaving here with totes full of misc pictures, papers, etc without any organization to them. My living room looks like a tornado has whipped every direction with stacks of stuff here and there, boxes all over, totes of every color, and our son's toys. :) Nobody come over...I'm not letting you in. ;) I decided I would split up all the pictures of my ex and myself; like wedding pics, high school pics, pics of the girls growing up, and put them in separate totes just for the girls. I completed that today with many laughs, smiles and for some odd reason my eyes kept leaking. I've got to go get that checked out.

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My mom & girls

The memories were rushing in like a tidal wave and I'd run with it then crash back to land again. It was a beautiful thing...my girls bring me much joy! There were pics of the grandparents whom have passed, grade cards,  afghans made by their great grandmother, all the pictures they drew and projects...no need for me to hold on to them anymore since they are now adults. I want them to have the opportunity to enjoy them, throw away whatever they want so that when it comes time that I go home; they don't have to separate, fight, etc over such. 

Now they've been notified their memory totes are ready, and bring a truck!!

She's happiest when her sister is the maddest! JK

Today was exhilarating to say the very least. Father's Day...ohhh do I have the thoughts on that. I don't know that tonight is a time for me to effectively share, so just know that there will be a day on that subject. I got to enjoy a father though today that brings me so much joy...he's my husband. He is the father of our son and stepdad to our girls. He is amazing, and I'm so thankful for him. I've never seen a man be so passionate about taking care of his family and sincerely loving on his wife as my husband is. He finds a way to complete us, he gives up some of his most prized possessions to feed us, and honestly he gives up so much so easily. I pray that one day this man will see all that he is, all of the value he contains within himself, all the world that he deserves...because he's worth it!

Just before he left for work tonight, I asked a tough question...what if? I personally don't like that statement and have told our son several, hundreds, uhmmm a million times don't "what if".  Good grief, we'd never get to the end of the conversation seriously. The question I asked came because in reality our financial situation which I disclosed in Day 1; "What if we get denied any place to rent, what's the plan?" This is a real possibility, not because we've been late on rent or anything to do with that; it's all the other stuff like voluntarily giving back the car, etc. He so calmly said, as much as he hated it...we'd put our stuff in storage and stay in a hotel until we found something.

As you read this...this isn't for pity; I promise. This is the raw situation in which we face. When I launched Simply LOLA officially, it was after I felt deep within my spirit; God calling me to be verbally naked though guiding and covering me with His tender grace, mercy and favor. So I don't believe if there's a topic I feel led to write that I can leave the touchy, embarrassing, authentic, humbling, sometimes almost shameful feelings out because there's somebody somewhere going to read these posts at their perfect time. We are okay with what happens regardless what that looks like because God has always had a powerful story behind it every single time. We will not die though it will sometimes feel as though we want to. Wouldn't it be amazing to be this financially distraught and end up being homeowners? That's what this 30 day journey is about...me showing how God provides every. single. time.


~Blessings!
Simply LOLA