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

It just got real...

as we celebrate K's 12th birthday today, all was fine until...we shaved his head. Then the indention of the hole in his head was vivid, the deformities of the skull were clear, and that dang mass of a tumor showed it's horror. I cried. We all can mask things all so well with cover ups, filters, airbrushing, and suppressing the emotions that bring discomfort, so we don't have to deal with it at least not at the moment. With all that removed, we are raw, vulnerable, and authentic...for most that is too hard. I can't live like that, I can't fake it, I can't pretend it's all ok...and I don't want to. When you find freedom from all the gunk of what society shows as being successful, beautiful, popular, etc...one gets to be REAL. All I care about is real, because see no matter how much hair covers his head...it doesn't cover the fact of reality. Being real brings relationships into fullness, brings purpose to life, brings emotions to the surface where one can cope in the moment instead of pushing it deep into the spirit...causing one to act out to a current situation trying to cope with a past issue that is extinct.

K has clearly stated he doesn't believe he'll make it out of surgery. He is nervous to leave his family, but knows that there is a beautiful eternity awaiting him. We're blessed knowing this confidence & faith he has to the deepest core of his being. We also know that he talks with his Savior a whole lot, and we don't doubt for a minute that he might just know more than we do. We trust that with everything we have. Some have questioned how I can even talk like that...well, reality is...it's a fact that he might just not make it. Death is real for all of us. Death isn't something to fear, but to embrace if you are a believer that there is a life hereafter. We do! Am I fearful, no. Am I worried, no. Am I angry, no. Am I looking for someone or something to blame, no. Am I sad, yes!

I'm sad no matter how this turns out. I'm sad because if he continues to explode that charismatic energy & creative imagination all over this world, he will still be at a constant risk making it through each day of life managing pain, more skull surgeries, and keeping a flow to the carotid and other arteries. I don't know if you know how in depth the risk is that this tumor has on his carotid & airway. The medical team has expected a stroke for years. So we're blessed we have had this long. We celebrate and fight daily. I'm sad of course if he doesn't make it...I won't have him here, but see I will see him someday again & knowing he won't have Neurofibromatosis, pain, and social disconnection from everything he wants to be a part of will make it easier to cope.

I want everyone to know right now tho...I feel as if God has shown me something else, and I'm publicly announcing it now. I was relieved of a burden that I was emotionally carrying in regards to the previously homeowner. Their son died in this house...in K's room. Going through an AFT session, I was given the release of carrying it because it was physically putting me in the deepest depression I've ever experience tho I didn't know what it was. I don't believe for one minute that it's K's time to go. I think he's got too much of a testimony for it to end now. I'm standing on that with 100% confidence. I really don't doubt it.

I am so thankful for a husband and the daddy K has...he's remarkable support, encouragement, and well you can't get any more "real" than him. I sometimes wish at times, he wasn't so REAL. :) So surgery to repair his skull is Monday, May 8th @ 7:30 checking in at 6 a.m. Until surgery...have a fantastic weekend! Blessings to each reader!!

The week I met my son...

for the first time without being prescription medicated for his autism and ADHD. There's no doubt that he needed something to help him since he was 3 years old especially if he was going to enter into a scheduled life of learning in public schools. He couldn't control any of the unique and outlandish behaviors, nonstop talking, there's a leaf or squirrel attention span, and anxiety through the roof.

(Quick update for those following our journey in regards to his skull that started back in November; feel free to read here if you haven't before. We have approval for the neurosurgeon, we don't have insurance approval for the plastic surgeon...how is this? Don't ask me! The insurance says it's not medically necessary. I don't call people stupid...but this is the stupidest/dumbest thing I have ever heard. For goodness sake, he's got a hole in his skull with a major vessel exposed. Whatever! They have drained me but they will not get me to quit. I'm guessing it is because we've met our deductible and they will have to cover it all. We are still just tentatively going to have surgery on April 21st. It's been a long time for this momma to wait. I want this over for his sake because he's concerned, and rightfully so.)

He's always had a great personality, but just like the commercial of the girl interviewing for the job...you got to have more than that. His personality, heart, and smile has definitely proven to be contagious if you can get thru the annoyances and quirkiness. It's hard to understand how someone can look so "ok" and so not be. On top of these diagnosis' he has a incurable genetic disorder that was by spontaneous mutation called Neurofibromatosis. If one struggle wasn't enough, when you build these together it's utter chaos. It's not his fault. It's not my fault. It's the cards we're dealt, and the journey that has taught me more than I could ever imagine.

This journey has put me on a path of research, and boy did I hate research papers in school. It's also been years of trial and error, with us still learning about him and ourselves every single day. I'll say some of the greatest discoveries have came thru an accident so to speak, or just flat tripped over it while walking it out. I've never been more thankful for a journey...not thankful he has suffered with all that he has, but what we've all learned from it.

The reason I title this post the way I did is because I really have never had a full week without him living life without prescriptions. Since February 2016 we've been on a quest to remove as many prescriptions as possible due to the abundance of side effects. You take one thing for a symptom, then you take another for the side effect of the first, and then you domino effect into a crash of chaos...that even the dr's can't help with because they don't know. When you are on (at one time over 20 prescriptions when he was on chemo) multiple prescriptions, no one has done studies of what happens when you do a combination of meds. They don't know the side effects of such recipes. His liver, stomach, esophagus, sleep, skin, and behaviors were all affected greatly. The chemicals in these prescriptions on top of the mix of them...was destroying him. We are not against prescriptions...we are against the over prescribing practices and band-aiding a condition without looking for the root.

Busted!

This is what set me out on the quest of finding the alternative. We did that through a long tedious year with multiple times of wanting to just give up. Over the last year we have gotten rid of 11 prescriptions for asthma, EXTREME restless leg syndrome, allergies, nerve pain, etc leaving us with 3 total meds which are for helping with ADHD and Autism. ***It's spring break 2017***...he has be able to prescription free since last Friday am (now Thursday). We got clearance from our doctor to try a full week of no prescriptions...granted he cannot be without help because he still has ADHD, NF, RLS, and autism. These diagnosis' aren't just going away. We have changed his diet, added supplements like magnesium, exercise, joint compressions, massage with raindrop technique, and a whole bunch of love & patience...and Young Living Essential Oils!

(ohhh gosh is supplements a journey in itself because these too have a horrible to great benefits. If you get a hold of an all chemical, cheap brand of supplements you are swallowing "nothing", and they don't absorb properly, hardly have any "whatever it is you need" in it, your body can't metabolize the type it is, etc. Just because it says magnesium...what kind of magnesium is it, and where did it come from?).

I've been 7 years looking for the best bang for my buck when it comes to the oils. Here's our story on that...my Facebook post. So with great welling up in my eyes and crocodile tears flowing down my cheeks, my heart is wrenching in sadness it's taken this long...I've met my son finally at almost 12 years old. I am getting to experience the "real" him, embracing the joy & compassion in his heart, with excitement seeing his passions/desires, fully grasping his creative and intelligent mind because he's calm enough to express himself fully without the distractions of life, anxiety of the world, and a sensory overloaded atmosphere. I have been blessed with insight this week, and all is well with my soul. I just know he's struggled for almost 12 years living this life...and now I can see his truth. No, we won't get to stay on this regime until after school is out due to many things, but I am awaiting summer in hopes all these last prescriptions will go away. I have video documented and photographed his behaviors this week to present to the Dr...so now as spring break ends I know without a shadow of doubt that God's creation of plants, trees, etc were made for our use...and they have benefited us greatly. I've never met a more beautiful person than my son. Thank you God for helping us all through this far!!

When you've been told more than you should...

Update without all the details of his horrendous journey with K and his skull implant surgery. I know there's many awaiting an update. Over the last few weeks I have found the pits of hell much too often. I'll say I've never dealt with depression to this extent. God sent help through creation itself tho for me so I could at least function through the necessities of life. I've been trying to work my Wildtree business, but with all the uncertainties among us right now it's been too hard to hold tasting events, schedule vendor events, or have parties. I cannot do that to my customers...schedule something then cancel, it's just not who I am. This has been very frustrating to try to help provide for my family when there's been such a recent significant loss financially. It just sucks.

Also during this time I've been dealing with 3 appeals in regards to getting this surgery approved thru insurance. Time is ticking away since we have met our deductible for the year, and well it starts over June 1st. (that's coming way too fast at this point in this situation) While trying to stay updated with the medical team, I've been given 3 different stories from the different departments involved. I'll admit real quick I'm pretty tired of the mess. I wanted an update this last week so I pushed some buttons with a little necessity in my voice. I got a call that disturbed me greatly about how the implant hasn't even been ordered because there is no contract with a manufacturer. I was told that they've never done this type of surgery.  I was told that another child whom needed an implant that was on state medicaid was looking for funds to have the surgery and that Koda's file was combined with that child's journey; so they were trying to find him funds. I said, whooooaaaaa! STOP! What? Koda has commercial insurance and a secondary, there is no funds to be sought. It's all a real mess! I made more calls.

Uhm, making a longer story short. The plastic surgeon just now called this evening. He started with, "I apologize for the information in which you have been given though it's the truth." He also said, "Koda is the most complicated case they've ever seen regarding the skull due to the soft bone tissue, the deteriorated design of the hole, and the location of the plexiform neurofibroma (tumor).  This is a very serious surgery due to the exposure of the transverse sinus, the unknown of what's really going on until they get in there." He will not do surgery until he feels he has what he needs to do it the way he would want it done if it were his son. So, instead of going in there, then closing him back up to come tell us they have to go back in because they didn't have the proper implant. He's researching and conducting business with 3 other 3D manufactures that can give him the implant he needs, 2 of those have failed and the 3rd to report within the next couple weeks.

He said, he may still have to go back doing it the "old way" and do a manual carving while in surgery because they just don't know. There's a tentative date towards the end of April, but not holding my breath. He said the last thing I needed to worry about was funds, insurance paying/approval, and deductibles." I said, that's easy for you to say. He kinda laughed, said yeah...I don't even know what deductibles are. Nice, glad you don't have to worry about that. I love an honest doctor. Let me say, he wasn't being arrogant or anything negative.

Then get this...I'm in the middle of all this and school calls on Tuesday. If I don't bring back K's progress note by lunchtime, he's going to loose his recess. UGH...thank God, I don't work outside home, huh? This is an ongoing battle that we've got going on this year. They apparently love to take away recess, but be damn if it's because I did/didn't do something. This paper came home on Friday in his folder, I flip through the pages to see if there's any notes for me, nope. Saw the grades, but didn't pull it completely out so didn't realize there was a signature line. His grades are all good, so I had nothing to discuss except applaud him for his work. I can understand if his grades weren't up to par..., but regardless I didn't know it had to be back on Tuesday (Monday-no school). His para has been out for a little while, and getting to school has been a struggle because he says no one really helps him. Just all those seemingly little things within themselves really build up on a momma.

Prayers for K please as he really is concerned about the surgery, and everyday he has to wear his helmet reminds him of it even more. Thankfully we have an oil that controls his pain and anxiety. Thank you to all of you whom have contacted me one on one to find out what's going on because I haven't blogged. I appreciate you. I also don't care to answer questions, so feel free. I'm not all overwhelmed by that. Be patient with me as I'm patiently awaiting too.

The flight, appointments, and... (Pt 1 of 2)

the IEP. On January 9th, we woke at 3:30 am to make it to the airport in time for our 6:30 flight to St. Louis. This was a follow up trip to the NF clinic and Neurosurgeon appointment to discuss multiple things along with the details of surgery. Koda has never be on a plane before tho he did get his first helicopter ride as well as mine this last summer. The security check-in process was a breeze, and quite funny to Koda because I had to take my shoes off and he didn't. He had a touch of anxiety when he had to put his weighted dog through the scanner which meant "let go" and hoped it came out the other end. He didn't have much patience with that process, but did make it through without a meltdown.

So there we sat...2 hours until boarding. What am I going to do with this child for two hours at 4:30 in the morning and no medication to be given until 8am. First, we checked out the coffee shop to be utterly disappointed in what we had ordered. I knew the Ipad had to last until we got home (assuming midnight since we were scheduled to land back home at 10:30), so I took advantage of the charging stations and allowed him to play on the Ipad while waiting. We took breaks to go to the bathroom, look around at the gift shop, and look at the planes out the window.

Then it was time to board with no incidents. He did wonder if he'd get a window seat and had hoped for one. He got it. :) He listened fully to the instructions by the attendant, by even getting out the pamphlet to read about emergency evacuations with the life boats, etc. This told me he had some concern about safety...so I reminded him of the helicopter ride and told him this would feel much different than that taking off and landing.

The take off..."whew, we're going fast. Ohhh, my stomach as we lifted off.", he said. He reminded me real quick, mom we forgot gum...we were supposed to get gum (he had been told this for his ears, but didn't know it to be fact that it was needed). This brought on a bit of anxiety, and I just said, "well, we can't turn around now". Asked him, what are you supposed to do when you are out of control in a situation and cannot do what you want? He said, "take a deep breath, be glad I have a supportive adult with me, and pray". I replied, "Perfect, and I'll pray with you". So he watched out the window as the city got smaller and smaller, he watched the wings, and questioned some of the shaking during turbulence (it was a really windy day). Overall he did fabulous. I couldn't have been more proud of him, his behavior, and attention to all that was around him.

Only what seemed like moments into the flight...we had an emergency on board. A few seats behind us a passenger had become unresponsive, as the attendant was yelling out to everyone asking for a nurse or doctor on board to come assist. I thought to myself first that ohhh no we're going to have to land, but was quickly interrupted in my thoughts by the sweetest voice beside me say, Momma...let's pray for that person right now. I nodded my head in agreement, and he proceeded with the prayer. I cried because I was proud of how quick he responded. Then, continued to cry on how disengaged I was from empathy and how self centered I was. Finally, because the words that only a confident child could say in faith.

We didn't have to make an emergency landing. When it was time to land, the pilot came on (that made Koda's face light up) to let us know that we would not be exiting the plane, but that the paramedics would be coming on to assess the passenger first. Landing gear came down, and Koda watched with amazement how the wing flaps came up to help break our speed. He said my ears do hurt, so can we please get some gum before we get back on tonight? I told him yes. The paramedics came on, assessed, then asked passengers to exit so they could get the sick passenger through the isle. The paramedics had the gentleman in a wheelchair pulled up to our seats so we stayed seated while they got him off. We told the gentleman we'd continue to pray for him, he smiled. I'm so thankful Koda got to experience a person being completely unresponsive to being responsive because then He knew he'd be okay even though he might be sick. Then we got off.

Now the anxiety hits me a bit, where's the car rentals, where's the bathroom, where's ...ohhh, thank God I don't have to go deal with luggage as we only had carry on's. We find that we have to be shuttled to the car rentals, so we get on the shuttle and go. Koda again excited to be the only ones on a shuttle bus, so he can direct the conversation with the bus driver. He takes those opportunities often as he has a lot to say (wouldn't know where he gets that from).

I had never rented a car before, so I was hoping my husband had all this lined out. Sure enough he did...and it was a NICE car. I go to plug in my phone to charge, and realize I had left the charger in my car. I didn't pack it, it was one of those last minute grabs that got thrown up on the dash. How in the heck did I forget my charger? Koda's Ipad charger doesn't work for my Android phone, so I was a bit frantic. The Ipad didn't have a internet connection so couldn't use that. See it was seriously at 3%, and I was in a town where I didn't know where anything was. I couldn't even get to the hospital if I wanted to without GPS. Where the heck is a map? Find a gas station and buy a charger, I thought. So, that's what I did. Well, it was a cheap thing that didn't work really. It couldn't keep up with the GPS on...so I hurried to find a local drug store, Best Buy, or whatever. Found Walgreens...yay, got a charger. Whew!

We are in St Louis at 8:30 with no appointments until 1pm. I gave Koda his meds and we headed to Science City. I will post all the pictures taken from the trip in an album on Simply LOLA Facebook page tomorrow. It was fun, interesting, and Koda got to build a dinosaur at the Build-A-Bear workshop, in-which he named Ripper. All was good. We headed to the hospital and with the first appointment being much of a disappointment; I needed to take a break and chill. So I took Koda to the center lobby of the hospital while between appointments, and let him play while I read.

Second appointment was worse, and this was with the neurosurgeon. He walked in, said "I'm not sure why you're here...I don't have anything for you. I'm glad you had another appointment." Ohhh wait a minute, no we're here to discuss the surgery. I have questions. I know what the plan is. His body language told me quickly while he was looking at his pager while stating he was on call; that he was going to leave the room with us discussing nothing. I said, but what about the dural ectasia, which plan are we going to finalize, and for goodness sake no one has showed me any images. He then quickly became the man I met the first time. Compassion set it, he grabs the computer, and says "here let's look at them". He showed me what the dural ectasia had done. :( What can be done about this, he looked at me and said, "nothing can be done". We don't understand it, we don't know why it happens, all we know is it is uncommon but has a history of showing up in NF patients.

He allowed Koda to take some pictures of the "scary/horror faces" from the MRI scans which will also be included in the album posted to FB. We did decide that plan C which is the final out of 3 different plans would be what we'd go with. This plan includes ordering the implant to perfectly fit the hole. The implant will be attached with a dissolvable screws/joints that will take about a year to completely dissolve. This is so there is nothing to affect with future MRI scans. Koda already has an adult size head, so we're hoping this implant will be able to stay with him. It is possible that Koda's head could continue to grow leaving the implant as a floater, which would cause for another surgery to replace. I still left this appointment very unhappy.

And the rest of the story...

(Part 2 coming tomorrow)

He said, it's just as nasty as cancer...

at some level it's worse because its so complicated. Those were the words from Koda's new plastic surgeon. At some level this comforted me because it let me accept this just isn't a hole in his head that needs to be fixed. It's deeper and way more complicated
than that, there's more to it than just a repair. There's a future that says this could happen again and multiple times. There is not one person alike when it comes to the outcomes of each diagnosed with Neurofibromatosis.

He doesn't appear to have anything wrong

Koda has hit the "rare" part of Neurofibromatosis because NF in and of itself is not a rare disorder. There's no cure at this time though research is showing positive results for problematic growing plexiform neurofibromas (that's just one little slice of one symptom). There's nothing we can do about it, but wait until the next thing happens. It drives me crazy not knowing what all is going on inside my son's body. I've taken life and my health for granted up until this diagnosis...we just assume because we get up, walk, see, hear, do our thing...we're all good. Yeah, that is just not so. In the flash of a moment...bam, it all changes.

No we're not on a death bed at this moment, but that is a very realistic possibility for any of us at any time. Just because we don't see it or feel it doesn't mean there's nothing negative going on. So with every pain, complaint of discomfort; my anxiety jumps thru the roof to "what's going on" with my baby. It doesn't stop, and these past few weeks even up until today...he's got more symptoms of pain and now an unusual growth about the size of a dime in the middle palm of his left hand. He discovered this "new" spot yesterday on our way home from St. Louis. Seriously...what's a mom to do?

So we've made 6 trips totaling over 3600 miles (4 to Kansas City and 2 to St Louis) since Nov 2nd, and we're no where close to done. We go back to Kansas City next week for a MRI of the spine to rule out tumors there due to symptoms he's having, and I'll be getting a call this next week to see what's next in regards to St. Louis. We might have more testing/scans such as an angioplasty right before surgery. We still have a lot to discuss with the neurosurgeon.

Puzzle piece hole is fitting if you know us at all.

So this previous St. Louis trip was for the 3D scan of Koda's skull so they could use for measuring the repair. We were given a suggestion of 3 types of possibilities of the material used to fix the hole. They have to have options because the scan tells them a lot but never tells everything. They'll not know the entire story until they get in there. The NF team did discuss that their concern was the plexiform neurofibroma in his neck is of great concern, and they told the surgeon's "NOT to touch it because they don't want to piss it off". Whew! We've been told forever by each NF doctor we've ever seen to leave that thing alone...and since it's stable; now is not the time to aggravate it. So, they wont. Thank God because I was really concerned of the possible massive bleed out if they had which was discussed by the first set of neuro/plastic surgeons we seen. I'm so glad I went with my gut to take him to St. Louis and not take the first thing thrown at us as the final answer to fix this issue. God has our backs and even more so our son.

Just like the neurosurgeon, the plastic surgeon was compassionate, very honest though he hated saying some of the stuff in front of Koda. I want Koda to know what's going on...it's his body. We realized real quick how much pain Koda doesn't complain about. With tears welling up in his eyes as the surgeon was feeling around; I asked him does it hurt, he said yes it does. Koda, you have to tell us when you hurt. The surgeon felt so bad. My heart cried to see my baby endure like he has. He's nervous and scared, and has every right to be. The plan is to cut over the top of the head from ear to ear in a zigzag style. They will not be removing any skin/hair and skin grafting in new like the 1st set of surgeons said they would be doing. Yay...he won't have a permanent bald spot (at least that is not the plan). The 3 types of material choices; his own skull sliced in half from the top, donated skull bones, or a plastic prosthetic. The attachment will not be steel screws, etc but a material that will dissolve (takes about a year) on it's own after healing. We are confident in what has been discussed so far. Again, much to still discuss (so I clearly understand) with the neurosurgeon.

Koda is not sleeping, we hope to find the upcoming MRI to answer some of this; otherwise back to another sleep study and meds again. Everything is a domino affect from the lack of quality sleep.

I wish I could just list out sometimes all the other distractions and storms overlapping us right now, but that doesn't benefit anyone. I need the storm to calm down so we can focus on the important issue, and that is getting this boy where he needs to be when he needs to be there. Believe me when I say that every nasty dart that can be thrown is being thrown in all areas. I really feel as if I'm drowning in the "other" stuff. I'm ready to go back to "school" being our biggest struggle. Priorities change so quickly. Keep us in your prayers and thoughts, thank you so much for reading our journey!!

In the corkscrew...

of the rollercoaster...but at least I can breathe. The last month has been a continual slamming of information, changed priorities, and different interpretations as if in a multiple car accident; the hitting comes from every angle. I was lost, dizzy, and discombobulated trying to figure out what was the priority. I knew I needed to find a way to get articulated somehow so I could even function one moment at a time.

Just know that each appointment we were told something different, the priorities changed, concerns changed, and even the status of each exam was interpreted different by each medical professional we saw. That right there has been so disheartening...I felt as if I was watching inside out in fast forward, stop, reverse, with tones of mute, too loud, etc. I have been seriously though all these character emotions thousands of times especially since the results came in from the PET and MRI scans. (side note: if you haven't seen this movie; you should. It was a God send in helping Koda figure out self regulation, and a visual of what emotions act/look like. We refer to these characters a lot)

But today, I can say God has shown up and showed off so far. I love him so much for that. First off, let me say I'm pretty disappointed in the radiologist and neurosurgeon team at CMH in KC. I'm thankful though of these frustrations because it proves people are human, and that we CANNOT put our full trust in any such human; we'll always be disappointed to some level.

St. Louis...I almost tense up because of what all I personally felt and we went through while on that trip to the #NF clinic. We met with neurology at 8am. The scans from the CT, PET, and MRI was supposed to have been overnighted to them in time for the appointment...that didn't happen, at least not in time. Thank God, I was proactive and took all the copies with me along with the written reports. These scans consisted of 3000 images. I bet they felt overwhelmed with being slammed with that. I hated it for them, and I really hated it for us because I just knew we wouldn't get the care needed/or that I expected. Our neurologist has moved on to seeing adults, so we're with a new guy (tho we have met him before)...that can make one fill a bit uneasy, right? I was pleased with the time he took tho he didn't have much time to view scans, etc. He clearly stated we'd be seeing the rest of the team. So we did.

Then the nurse coordinator stated they really wanted us to see the neurosurgeon due to being so far away from home, but didn't know if that could happen. They called the coordinating nurse practitioner, and guess what...she came running up from another floor to assess Koda. She went out into the hall and called the neurosurgeon & left a msg. She told us that he was in clinic but trying to see if there was a way somehow he could see K that day. He called, she came back in to tell us to come back at 2pm. (Thank You God!!!! Seriously...we knew we needed to see him but since we didn't have an appointment...it would be a miracle) Miracle happened. Seeing two neurosurgeon's in one week is a bit overwhelming in itself...but so glad to have gotten this 2nd opinion with expertise in NF.

We went to lunch after getting clearance from the other team professionals, so after getting food we headed out for our faithful visit to "Big Foot Monster Truck" facility. That visit was a nice break away from the hospital. Back to the hospital we went...2pm my nerves were heightened with every emotion; this was a God appointment just getting the chance to visit with him. He then spent 1.5 hours trying to load the images, talking with their radiologists so we ended up not seeing his face until 3:30.

By User:Wikid77 (clarifying Gray's image) - Derivative of Wikimedia Image:Gray488.png., Public Domain, https://commons.wikimedia.org/w/index.php?curid=2945470

He  walked in grabbed and rubbed his chest and very frankly said...I'm very concerned. I've only got to see a few images but this kid needs a helmet because his transverse sinus artery is exposed (pic above as marked SIN. TRANS.) This drains the blood back down from the back of the head.

If he doesn't have protection and that gets hit; he could bleed out. What?! Why hasn't anyone else been concerned? We have, but we're just the parents with no medical knowledge except the doctorate degree I'm continuing to earn while I learn; currently working on neuroanatomy. He then tells us the tumor is stable in itself (yay!)...that the tumor is not fully responsible for the deterioration of his skull but that he has cranial dural ectasia. Ohhh what's that? How do you say that, and how is that spelled (notebook in hand)?? I try to write it down as he spells it out and can't, I've become dyslexia in the moment. He so nicely takes my notebook and writes it out. :) This new terminology has been the inside culprit causing pressure pushing out against the skull resulting in the thinning of the skull. Koda has several areas of thinning skull now that we look at it. Now we've got something else to "deal" with. He stated it could become very complicated and complex surgery depending on what he finds.

He calls in the orthopics lady regarding a helmet...she comes in and says ohhh no, I'm not suggesting to put my "institutionalized looking" helmet on him. She suggests we go out and buy something he likes off the shelf so he can design it, pick it etc. We couldn't order one because he had to have it to go back to school. When the surgeon announced he needed a helmet, Koda said, "I'm nervous. You know the kids at school will make fun of me." I appreciate this team thinking outside the medical box, having compassion for the "feelings" of a child, and trying to accomodate the best they can. #medicalsuccess

So we leave there Wednesday at 5 pm with this...we wait until next week to get confirmation of all that will actually happen but the plan is for surgery to fix the skull in January in St. Louis. There could be multiple other testing and procedures that he wants done such as another MRI, angioplasty, labs, etc. He must have time to look over all those images, and it's totally understandable. He spent 3 hours on our case with us getting an hour and a half of his physical presence in our room. Who does that? I know who ordained it! I'm so thankful for his frank-ness and compassion.

So I get home wiped out. I asked in prayer for help prioritizing all this info because I was swarming. I'm so thankful for every single prayer that has been lifted for us because they are being heard and delivered. We wake up on Thursday morning to run out to find a helmet. Quickly after 3 stores we're getting discouraged. Fifth store is Academy...while dad and him are trying on helmets, I go to look at some winter boots for him. I come back through, and somehow looked up on this shelf way higher than eye level. On that shelf sat one helmet by itself with a clearance sticker on it. I pull it down to look at it, take it over to the guys; Koda practically yanks it out of my hand. He puts it on, it's a perfect fit...he like it, and states "can we get it"? We said hold on, lets see if we can find more, maybe a different color. Of course not, it's an ordained helmet...there's not one single helmet like it in the store. $60 helmet, and we walked out with it for $17 along with some boots on clearance. #win #Godisinthedetails He won't take it off, he says he likes the pressure. #iknowafighter #endnf #neurosurgery #duralectasia #plasticsurgery #secondopinionscanbelifesaving

So last night, I decide to learn more about that new terminology of dural ectasia. I pray before researching for God to help me not get overwhelmed, protect me from things that have nothing to do with us, etc. At 11:11, I was overcome with peace because I found images that perfectly shared what I needed to understand visually. I found new information out about NF I had never heard as this new term is the 2nd on the list of associations to having been diagnosed with it. If this is truly in-fact a new diagnosis' for Koda it might also very well be the reasoning behind his incontinence and leg pain as well. We'll see...though we really don't need another diagnosis...it sure would explain a lot of things. #hopefulwevefoundananswer

So until the NF neurosurgeon calls next week, you have been updated. To God all the glory! We know your prayers are working!! Thank you so much to all that have invested emotions, time, creativity, support, finances, postage, etc to let us know we are loved!! #kodaskrew

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!

When there is not a damn thing you can do...

...I emotionally disconnect...

so I can get the required things done. So for my readers whom don't know what's going on, let me update. Our 11 year old son, Koda has Neurofibromatosis (NF1). You can find out more about this incurable disorder at Children's Tumor Foundation. He has a large plexiform neurofibroma (diagnosed and tumor found at the age of 2 1/2) that starts at his C2 vertebrae wraps around the left of his neck, engulfs the carotid artery and deviates it, goes into his shoulder and chest behind the heart while also deviating his airway. We've been monitoring this tumor via MRI's yearly except for in 2011 it had grown more than it normally should have so we did a year of chemo. We got a 12% decrease in the tumor within the first 3 months being on Gleevac, but nothing after. At a year, the side effects out weighed the benefits, so we stopped. He had MRI's every 3 months at that point.  He has had a brain glioma that disappeared and another in his neck that disappeared...we give all the glory to God for that miracle.

Everything had pretty much stabled out since though the pain of being touched and chronic pain is just something that has always been; he doesn't take anything for that pain. Good enough that we decided we'd skip this years MRI in the summer because well, unfortunately...there's nothing that can really be done. He had no side effects that would cause us to think otherwise. Koda is a multi-diagnosed kiddo with Autism, ADHD, Central Auditory Processing Disorder (CAPD- requires him to wear receivers on his ears like hearing aids while we wear a microphone), mild conductive hearing loss, Restless Leg Syndrome, and Sensory Processing Disorder. These all do domino effects sometimes and it's hard to tell what is causing what.

Koda is very immature in his interests and play so socially it's hard to find and have friends. Tho to him, everyone is a friend. So we just recently moved to a new town, about to buy this house at the end of our rental contract, and Koda has neighborhood friends; he's never had this in his life. Life was looking fabulous until this last Friday. Koda came to me in significant pain crying and asked, "why do I have a hole in my head". I'm like, ok...let me check; OMGosh...something is very wrong, not only was there a hole I could put my adult fat finger into; the skull behind the ear seemed to be gone. Daddy Rick works weird night hours...so he was asleep; I woke him up to come check this out and see if he would tell me I was crazy. He didn't. He did however say, I wonder how long it's been like that and no one told us. We've found out things after the fact many times...so we're not too trusting on being told all we should be.

I call our oncologist after hours to have the doctor paged. She calls, it's not our doctor tho. I explain, she says she'll look at the old scans, see what they show, and call us back. She calls back...nope, she doesn't see anything that would state or show such. Of course, she does a CYA and states she's not the radiologist either. She lets me know she'll be calling our doctor first thing Saturday and for us to look for a phone call on Monday. See even if we were to go to ER...they wouldn't do a MRI because he has to be sedated, and he wasn't in a life/death situation. They only make appts for those due to the lack of availability of anesthesiologists. MRI's were the only thing we were thinking and apparently her too because she looks at tumors. We didn't think about a cat scan...which looks at the bone; so we waited out the weekend.

Monday came, the phone call came, and we had an appointment with her yesterday, Wednesday in Kansas City 3.5 hours away. I had been praying that we were crazy, and she'd send us home saying we were feeling the tumor or anything...but my gut knew better. She agreed and didn't let us leave without a CT. After the scan, she told us to leave and eat (lunchtime) and come back to the clinic to go over the results. When that picture showed up on the screen...my emotions stopped in their tracks and shut off. The tumor (these type do this) had eroded his skull from the back of the ear to the base measuring 3 cm x 2.5 cm...and the brain was protruding out. She explained that the brain had a protective lining so it was not exposed. I could tell she was being very careful with her words and then given us her plan. She had already called our NF clinic in St Louis (this is an entire team of specialist in the area of NF. When we go there, we see everyone in a day which include genetics, ophthalmologist, neurologist, orthopedics, etc). She had already scheduled a PET scan (we know she only does those if she thinks the tumor might have went malignant), an MRI, and an appointment with a neurosurgeon (this word all of a sudden doesn't go well with my soul).

We go home. Today we're called by the neurosurgeon's nurse stating that there's been a change of plans. MRI moved up because he won't see us until the MRI is done and that he wants 2 other types of measurements to take place during the MRI to get the vascular and arterial pressures, etc. This made me feel good because it appears they're going to be checking into things deeper, and it just flat makes sense. The next thing...he wants us to see the plastic surgeon as well; my mouth dropped....while I said, ok. This is getting more complicated as days go by. I'm thankful tho for what seems to be concern coming from the medical field enough to speed up, move up, and place all specialist that might be needed into this deck we've been dealt.

We have a fantastic group of support at least with prayer warriors...and that means the world. I will say that right now I want to throw a WTF/H/Whatever party as I discussed with a friend because well to be honest, that's all I'm thinking at this point. Not letting too much raw happen right now; I've got things to accomplish. Now with that said, I also feel I just want to be silent...because I could be dealing with worse, more, etc...Like a sweet friend of mine whom has been in and out of the hospital more times than I care to count with her son's young life. He's still in diapers! And while I was there at the hospital, I stopped in to see him/her in the PICU. Weeks in there, surgery, trach, seizures...and the list doesn't stop. We were able to pray with them up until the point Moose had to be bagged again. We left so Koda wouldn't have to watch an episode. So close to not knowing if this was the last time she's going to hear him breathe. My heart hurts for her, for him, and their entire family...where is her support; but at the same time knowingly being selfish not wanting to leave a minute unsure of what's next. This kiddo has been bagged 30 x plus since being in there.

My God why has thou forsaken me; is all I can think while looking upon their faces; and that is what I see
...Sweet friend; our prayers are with you and Moose. We love you so! This momma isn't going through any of that; though I will not discount that. What we are going though tho is not fair, and there is not a damn thing I can do about it. I will continue my faith, my prayers, and taking care of our son the best way I know how. Pray I don't blow anger in a unsafe place...I know the steps of grief; and this is part of grieving. I'm not looking forward to anger when it hits. For now I'll stay in shock/denial/disconnected.

Just because that face looks as if nothing is wrong...don't be deceived. You just don't know what someone is going through. Thank you for your support, prayers, and sharing our story so someone else might not feel alone. I appreciate you!! God is still good!

Tuesday's tornado and tumor thoughts...

Warning! As you continue to choose to read this post...you might endure the whipping, bouncing, and thrashing whips of the storm in my head; proceed with caution.

We're blooming into spring way early this year. I had the windows open in February and in shorts by the end of the first week of March. Crazy! What's summer going to look like here in Kansas? We're in need of a good soaking rain, and as I look out my kitchen window at the gloomy weather that can cause much despair on the emotional well being of some...I for a moment am caught up in a tornado of thoughts. Why can't I be one of those that have it all together?

The trigger to this thought comes from physically facing the overwhelming stacks of papers, reports, bills, insurance EOB's, stuff to file, stuff to throw away, envelopes that haven't been opened in weeks (if I don't open it...I don't owe it, right?). The mail comes and I push it aside awaiting the day to get organized and get it together. I already know what is in the envelopes and I know I can't pay the bill, or get focused, or seem to find enough time to meet the demands of the ever increasing papers to fill out for someone, some service, some requirement that is in urgent need. I filled the trashcan as I know I need to shred those documents, and I look outside just for a moment to catch the glimpse of what we need...Kansas is in need of rain...and so it will come. The squirrels are running along the fence line playing as if they have no cause of any worry. The trees are blooming without a care in the world, just doing what it does. The birds are singing as they swoop down to find food in my yard...and I'm wondering where the food may come from for the next week until payday. Does anyone else struggle? Is it really that I'm so dysfunctional and oblivious to what else I should be doing to make things balanced in life?

On top of all that, my heart is torn from what Neurofibromatosis can do. If you've never heard of such a word, that's understandable even with much awareness; it's still pretty unknown within communities. When it's a child though it just doesn't seem fair and that part I thought I couldn't control. Maybe I still can't control the outcome, but you bet your sweet tarts I'm going to do everything in my power to drive this monster another direction to the best of my ability. In the past always looking for the next pill or medical advice to help; we're now driving away. We've done 8 years of meds...we are heading for nutrition and supplement city. We are alkalizing our bodies, filling them with oxygen and decreasing the chances of feeding the tumors more of what they want. We've removed all sugar as stated in other blogs and found where the deficiencies are. What if, just what if...the body heals itself with the balance of good organic whole foods, water, exercise, and necessary supplements? Just what if? What if we are feeding the monster with the processed food, gmo's, medications, etc? I can't take that chance anymore.

I've only lived a few years of my life at a place of serenity, joyful balance and without need. I don't work right now so why don't I have time, make time, prioritize such issues better than I do? There's something more to this chaos and I'm wondering if I'm alone? Some would immediately say...well, get a job. Yeah, okay that would bring in some income but it would also take most of it to buy another vehicle to drive (as we only have one), the gas, insurance, maintenance for such a vehicle. I'd lose the time at home with doing laundry, dishes and not stressing over the days off to do these things; which take time away from what matters to me most...my family time. I don't get joy from the mudane thought of repetitive work with no real purpose to my being. So, by re-reading that last sentence I sense I've not found my "place" in the world. But that's just an excuse too tho very true, I don't stay on top of the stuff at home as I should. It's in these moments of thoughts where I can drown in self misery. It becomes a worldwind of self pity, shame, guilt, and well I'm just not who I want to be.

I am constantly thinking about getting back to work; that's what every one thinks and most do. If I thought it would reduce my debt, give me some soul satisfaction, and I could complete work and home...I'd do it in a minute. I can't though, not right now at least...I don't know how to make that happen. It's quite embarrassing to write such vulnerability and transparencies down for the world to access, but I somehow don't think everybody really does have it together. I don't think everyone does have the financial freedom without stress of robbing Peter to pay Paul or have credit cards debt out the whazoo. Have you ever had your utilities shut off? Have you ever had to file bankruptcy? Have you ever been evicted from a home or went through foreclosure? Have you ever had a medical diagnosis that took more than you're capable of earning even after insurance? Are you actually doing everything you know to do and it still isn't working out?

How I make it though is only because of a husband that works his ass off! He cares for his family and is a provider for sure. He wants me to do whatever makes me happy, and with that he assures me staying home is just fine with him. Now, granted we all have wants but we personally have found out that there is serenity and security in having just our needs met. I keep going back to what am I doing wrong? Well, first off...not going to the city to ask for an extension before the due date gets your water turned off. So, who's to blame there...no one but me. Now with that said, I had a reminder on my phone to do such but because I was out and about busy I dismissed it and then forgot. Ugh! How long can a husband continue to deal with a wife who does such things? Does he get frustrated because if he does; he never says anything to me about it. He always says, it'll be ok. Is he in denial too? Maybe he thinks (here I go again putting thoughts in his head he never once thought) he busts his butt at work and he doesn't want to deal with any additional issues until they arise? I have no idea where I'm going with all this because again as it's titled a tornado of thoughts. Procrastination is a personal description I'd give myself as well when it comes to personal life. I'm not that way when I work, so why is it that I'm that way at home?

I can't fix it at the moment so don't face it maybe is my underlying issue. You know if I think back on it, if I left my room messy...Grandma would come in and clean it. So if I leave it long enough will someone else take care of it? It's not working like that in adulthood at all...though I will say the hubby always gets us out of stuff that I personally think in the moment is going to destroy us.

Am I alone? Do I need to get off FB, Twitter, Instagram again because it's taking too much of my time? Will I really do more, if I did...or would I fall back in bed with the darkness of depression. I can almost hear it...Girl, go get you some meds! Ha...no thanks. I wonder how many would fess up to thinking that is what I need? This storm shall too pass but it does seem this is one area that I just keep going round and round the dance floor with. I need to find a new dance or leave. I'm also thinking I really should not publish this; then I think, but what if I did? For the readers within my circle of friends, would you still think positive of me? Now, does it really matter? Tornados can be beautiful and intriguing from a distance, but to be in it; uhm, scary, overwhelming fear, and the thought of life is about to come to an end. So please don't judge from a distance unless you've been in your own tornado. As I finish this last sentence...a release of huge rain drops begin to pound the outside furniture and a freedom comes to my soul. The storm never stays; yes, it may do some damage but from it I learn for the next time it hits.

I have it more together than I am thinking. Bills have been paid for the most part most of the time.

I've gotten my priorities in order when it comes to needs vs. wants. May I accept my knowledge through experience as a way to connect with others. It's not I that need to know if I'm alone...it is the reader that is needing affirmation and confirmation that they are going to be okay and are not alone in the darkness of the storm either. So here's to you...it'll get better, but you must walk right on into the storm so it can change you. Don't run because eventually it catches up somewhere in time. Actually in the fear of it all; you usually are only thrown around but never destroyed. You're going to make it.

Here's to risk, chances, and authentic vulnerability. Aren't you glad you're not stuck in my head? :)

Blessings!
~Yvonne