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!

Might as well laugh about it...

...yep, we just moved here within the last 6 months, and now we're facing moving again. You can read about that crazy rollercoaster 30 day journey here titled "Day 1: If you don't move...God will move you." So the story this time goes like this; when we found this house for rent, it actually was listed for sale/or rent. The rent was cheap $600 a month compared to what we had been paying along with being a bigger house (5 bed/2 bath), and it had a big shop/garage (enough for 4 cars). It really ended up having all these minor things as well that we loved. We told the landlord we'd be willing to look at purchasing it in the future, but for now we needed to rent. We signed a 6 month lease with the thoughts of a contract for deed to be signed afterwards. Also, the neighborhood was full of kids always outside; which was something our Koda had never experienced and needed.

Well it even got better than that, the landlords came to us with the contract info I had requested, so we could know ahead of time the amount down and details within. We were in tears after that meeting, they had removed the realtor from the property/contract. They decided we wouldn't put anything down, and they would carry the mortgage in its' entirety. They had already picked the percentage of interest and attached an amortization that included only increasing our rent by $2 a month, and paying it off in 9.5 years. They are not expecting us to find a lender within a certain amount of time like most contract for deeds can include. Our mouths dropped to the floor...did yours? This is exactly how God works in our life over and over! But not only that, they are fixing everything that "needs" to be fixed like a roof issue (no leaks, just shingles), the sidewalk needs to be completely pulled out and redone, the porch roof needs replaced, and replace all the old water piping to pvc. This is all written out in the contract. We just knew this was our confirmation it was now time to settle, make our home, and find the security in that we had long been awaiting.

Since then, we've had to file bankruptcy. We have incurred the debt, so we will be paying $1000 a month for the next 5 years for that, but in all truth; I don't feel guilty about that anymore just sad we had to. I use to feel like "bankruptcy" was such a "bad" word. It still doesn't feel good to write it down either. Bankruptcy doesn't declare who we are or change the significance of our lives like some may judge or think. On top of that we've had the newest journey of our son's tumor eating through his skull (read here)..., and we're thanking God that it has not went malignant. Again, like I posted in the results of the PET scan; our journey is really just beginning with all that...we've got a road ahead of us that looks very crooked and honestly many parts of it we don't see. We really do trust God with all of it. So this next week...we start making the trips to surgeons, specialists, etc.

So when we filed bankruptcy we were upfront about wanting to buy this house. The attorney himself didn't see a problem but told us to make sure to submit the documentation/contract for court trustee approval. Again when we went to the meeting of creditors, we met up with another attorney from the office to face the trustee; at this time, we brought up again the contract and desire to buy this house. She (attorney) said, don't worry about it now...submit it after the final hearing in Nov...so I held on to it. I submitted it as requested via email about a week and a half ago.

Late yesterday afternoon, I got the most disheartening email from a paralegal. The email stated our paralegal was no longer with the company. If we had any questions or concerns we could email the general email address. She also included that if we wanted to ask for approval we would have to submit a motion to borrow. The fee for this is $450.00 and must be paid upfront to file. Then continues to say that if we would like to discuss any of this with our attorney, at the time of scheduling an appt. there would be a $125 fee to do so. Grrrrr!! Never in any of the previous convo's was there fees mentioned.

The landlord is expecting us to sign the contract on Jan 1st. 6 weeks away...and I get this email. We're very concerned at this point and questioning a lot of things at the moment. Are we not where we're suppose to be? Is there something going to happen with Koda that will make us need to be elsewhere? Why did this work out so nicely up until now? We just moved, really? I unpacked everything! ????? I also asked God, what instead of why? The landlord has already been so generous and actually way over what I could have imagined happening for us; so they want an approval from the trustee as well for us to sign. Makes sense...they've got to protect they're investment.

So my question is do we pack up now before (we've moved in much quicker time than 6 weeks before) all this gets going with Koda or do we wait it out? I've put in a call to the landlord so they'll know what's up. We don't expect them to do anymore than they've already done, and they need to sell their house. So with great concern I wonder tonight...what the next 6 weeks is going to entail. Let me be very honest here...I fully trust God to take care of us and know He will. I am concerned of the overwhelming journey we might have to face. Packing, surgery, looking for another house, deposits, moving, chemo, Koda's well being after being told we can't stay if that happens...yes all IF's...but I'm human and I think a lot.

I have to say that after posting a blurb of this on FB, I'm frustrated with comments. People really don't know what they're saying...good thing I know they mean well; but it definitely is a thorn in my side. Just like when someone loses a loved one...please, stop saying heaven needed another angel, God has a plan, a purpose, etc. For me personally, I know He does...but saying that is very discounting to someone's true raw emotions in the moment; it is NOT helpful. In those moments, I'm thinking I know this...my head knows this, my heart knows it as well. I'm sitting here with a kid that has part of his skull missing, a tumor that has not been able to be touched/removed because it's so risky; he might die if it was attempted. We live on scarcity in the natural realm of things because my husband (bless his hard working ever so dedicated heart) is the only consistent provider for our family...so I can be available for this ever changing condition of our child. Don't question my faith or ask me to remember...I KNOW! I don't like this journey at all though I know we'll see the blessing of it; we already have: our son's character, personality, life, and faith.

So, $450 isn't much really but it's a whole lot to us; more than we have right now in this moment or could even think of getting (our son's appts, traveling, lodging, boarding of dogs, eating etc at this time are where our finances are going along with paying the bills)...this isn't a call for help; this is a blog of real raw emotions. This isn't a manipulation to get help either; see...God does over and beyond what I can imagine every single time...so I'm waiting on Him to direct us. He will! I'm just concerned that His way for us isn't our way right now. This might not be were we thought was home, and with everything going on...I might as well laugh! He probably has heavenly laughing fits just watching me have my fits.

Sidenote: For me (because my husband can't get OT pay or work OT...he works enough) to make enough $$ to help pay this $450 fee...I need to sell some more products. If you haven't already been a part of my Facebook page then like/follow @rentschlerswildtree or shop my website. Ask me about workshop bundles to fill your freezer! This is a win win...you get simple, healthy, natural groceries you'd already be buying and be helping us out too. 

Thank you for reading, thank you for allowing me to live in my raw, disgusted, frustrated, sad, mad, and sick sense of humor about it all...embrace joy in your life because if you can't do anything about it; then might as well...laugh. "Proverbs 31:25...She is clothed with strength and dignity; she can laugh at the days to come."

(Update to PET scan) What I can do through this...

Let me apologize to those who have been awaiting this post to get the scoop on all the other details to our newest journey (read here to catch up)...with the recent presidential negativity throughout social media, some flashbacks of personal trauma that was also triggered by another's heartbreaking FB post, so I just mentally shut off everything and enjoyed the last two days with my family doing whatever we wanted. It was so nice to step away from the phones, computer, and screen.

That referenced post above was titled "When there's not a damn thing you can do"...I'm taking back as of right now because God definitely showed me that when it seems as tho you can't; you can!! No, I personally can't change the fact that at this moment our son has a tumor that has ate through his skull. I decided though, I was going to embrace the moments of joy throughout the new journey as we find out all the details of what the specialists suggest to do. What I didn't realize was how just maybe we were going through this so we could be exactly where we needed to be for someone else. I'll explain that in just a bit.

So, we are leaping with joy and thanksgiving for the answered prayers of Koda's tumor NOT being malignant. I had also posted on FB before we got results: 

"I'm posting this now because I'll not be shocked to find out why it happened after we get the results from the PET scan today...the technician apologized to me and called the dr, nurse, and radiologist to say she accidentally took too many images...it was only to be of the upper body (trunk up) and she took clear down to his feet. I said, I'm fine with it because it gives us a full body baseline regardless. I don't think this was a accident at all...in K's life, history has proven...there's a reason for everything. 

If you don't know...PET scan. A positron emission tomography scan is a type of imaging test. It uses a radioactive substance called a tracer to look for disease in the body. (They told us that it's where they feed the body sugar so if there's cancer it'll light up because tumors love sugar and will eat it up)".


I posted that because Koda has had other significant pain episodes throughout the years in his legs, and honestly I was expecting to hear they found something there. Praise God that isn't the fact, so we are thanking God for the additional images for future reference baseline, if needed. I'm ecstatic beyond words that nothing else showed up. Seriously my heart couldn't have handled something yet beyond what we're already dealing with. One diagnosis' in itself is enough for any family, but 5 significant affecting daily living is beyond me already then the skull thing was/is too much! I don't function on my own strength...I have none! I'm worn! And the newest journey is just beginning.

I wish I could say that with the great news from the PET scan that our journey is now going back to "our normal", but that's not true. We've got quite the journey ahead actually. Here's the next steps:

1. MRI in Kansas City to update us on the actual tumor itself growth/measurements/etc 

2. Neurosurgery and Plastic surgeon appointments in KC

3. NF Clinic appointment in St. Louis

4. There will at some point be a surgery scheduled to fix the skull itself (if it can be done with where the tumor is located) so much still to discuss and figure out.

5. Probable out of state (several places including NIH National Institute of Health) visits for clinical trials of  different chemo meds. (We really do NOT want to do this again...He was on the Gleevac trial for a year 2011-12)

Koda's tumor is complicated, it's as a bag of worms always moving and hopefully not growing, it engulfs the carotid and that in itself makes it too high risk to remove. All of his team up until this point has said they wouldn't touch it. The oncologist is concerned about getting this tumor to shrink or de-bulk it so it doesn't do additional damage to the skull...she has mentioned us going to Cincinnati for surgery because she knows they will do this type of surgery (ugh...no, we won't be making any decisions about this until we talk to the NF specialists because well this isn't her area of speciality...malignant tumors are.) 

These type of tumors if cut on tend to grow back 3x faster after surgery anyway. We are going to have a lot of praying time and discussions as we weed out the pros and cons for each suggestion as they become available to us. In the meantime, I'm now using Young Living Frankincense and Sacred Frankincense topically on the tumor while diffusing other blends as well. We had also fallen off our "clean eating" for a bit after our move here...but, that is back on track at 100% now. We will do what we can and we fully believe diet/atmosphere plays a big part in emotional, physical, and spiritual health. Please keep praying for us through this journey. Thank you for all that has supported us up until now through prayers, calls, texts, hospitality, and the financial support & donations to the gofundme page.

Now back to the last sentence in the first paragraph. This journey has allowed us to be placed right where we needed to be for someone else. If this had not happened, we wouldn't have ended up with a physical appearance much less anything else when it was needed. Another family 4 weeks into the hospital stay, 2 surgeries later this round, and still living in the PICU; God had a plan. I thought I was going to visit my friend and her son while I was there, well on the way to KC the night before the PET scan...I was prompted to go see them "now", as soon as I got to town. I dropped off Koda at his aunt's where'd we be staying the night...and off to the hospital I went. 

I got to spend some time listening to all that had went on. My heart sinks watching this momma not see daylight, but knowing she can't think about leaving him is totally understandable. So many times this precious face has stopped breathing...etc! :( So this is what I can do while we endure this journey of our own! I would've set up a Gofundme page for them, actually I'm shocked to no end that no one has done it yet...if anyone needs support it's this family. Daddy doesn't get to be there as they would like, because like us; bills don't get paid without somebody working. Gofundme does charge fees, it takes at least 7 days to get the first deposit, and this family at this time doesn't have an account to link to it so...

Update tonight from momma: He's running a 103 temp, heart rate at 200, and 3 new antibiotics started. My heart hurts so bad for them all. Don't let that precious face make you think all is fine...it's not. By God's grace, favor, and mercy Moose has endured and continues to fight daily. Help me help him & his precious family. This is now Koda's baby...He prays everyday, at every meal, and every night for this boy.
Thank you in advance for your prayers and support.

Until I work out other details with this family to get another fund raising opportunity made and funds to them; I'm asking for any donations possible. Please use this link:  PayPal.Me/embracingjoy I will make sure all funds donated gets into the hands of momma. Make sure to note that it is for Kennedy Murry aka Moose. 

I never thought of it as arrogance...

...I've always known it as pure faith.

I had a conversation this last week that put me on my knees. I was sharing how I knew God was on our side, and how He WILL take care of all this. After those words came out, a reply came out in this phrase that baffled me..."you're pretty arrogant, aren't you". Whoa!! I'm confident in my words and belief of what I said, but arrogant was like a bat swung to the face, it knocked me down. I went into prayer asking for God to show me anything that wasn't of him, and if I was speaking wrong. I did question this among some friends because I sure don't want to come across as an arrogant person.

See, I don't have anything to be arrogant about. My history shows life wasn't handed to me on a silver platter or a silver spoon in the mouth. I'll admit I lived a childhood better than some, and I'm thankful for that. We had what we needed and many times I got what I wanted from K-Mart...if that clears up the picture a bit. I'm actually pretty embarrassed and humbled most of the time because we fight as a family for every single thing we have...and most comes on a payment plan. We don't live on credit or beyond our means. This is hard to write, but it's the story that we sometimes don't like to talk about because it's just flat hard. We've made irresponsible choices in the past, and I'm sure the future will see some too. But God has ALWAYS provided...ALWAYS! Absolutely I've thought about how we will eat when the bank account is in the negative, or the gas tank is empty and there's a required Dr. appt. Have you ever been in that place? I have more times than I can count. It sucks!! The list goes on and on about how God has allowed us to stay in a humbled place; maybe just maybe because I'll give Him ALL the glory when each and every miracle happens.

Good grief, to me; getting up each morning with lungs that can breathe, and not being on my death bed is a miracle in itself. If you just knew me and the bumps in my journey...how am I really not on mental health medication or in an insane asylum? No making fun intended there...it's the flat truth. Call me a Jesus Freak, Bible thumper, whatever...but after one has read through this entire post; how can there be any other explanation? Here's a bit of just what has been provided for us...

One of our daughters has cerebral palsy and has left sided hemiplegia. We were told she never be able to play a musical instrument (because that part of the brain was destroyed by the stroke), walk correctly without leg braces, or be able to drive because of the lack of peripheral vision in the left eye. Don't ever say, NEVER to this momma! That child now has conquered the world of proving God has different plans than the medical team did. Out of leg braces by age of 8, played the trumpet and was in the marching band, drives a car, graduated as valedictorian with a 4.0 and 40 college credits, then graduated college in 3 years with a dual degree in Criminal Justice and Computer Forensics with honors in both. She went to work in her field before graduating college, and now is about to get married in May. God gets that glory! Proving one is more than the diagnosis!

Our baby boy, whom now is 11 is diagnosed with more syndromes, disorders, etc than most can keep up with. He's diagnosis include: Autism spectrum, ADHD, Neurofibromatosis (a incurable tumor disorder that is a spontaneous mutation not genetic), Sensory Processing Disorder, Restless Leg Syndrome, Central Auditory Processing Disorder (causing him to have to wear receivers in his ears like hearing aids and the speaker must wear a microphone called a Roger Pen), and Mild Conductive Hearing Loss in the right ear. He lives in a very limited interest world and is immature to our society's typical standards. God has so graciously allowed 2 tumors to disappear without medications, but yes we still deal with one large mass which can be read about here. So we on to now for our next adventure that has caused the mass to make a hole in his skull by deteriorating the base behind the left ear.

We've learned to ask "what" we're to do with each step in our lives instead of "why" is this happening to us. Wouldn't you agree we've been handed a tricky and questionable deck of cards to play? We have a countless list of provisions of favor that I feel are gracefully and mercifully allowed because it builds our faith to the point of arrogance I guess some feel...but we feel is because we share the story that He is still faithful, still good, He loves us, He is our help in trouble, He provides when there's no other possible way, and people want to be known & not feel alone.

So just a couple of provisions currently happening:

1. We're about to buy a home 5 bed/1.5 bath (after just literally filing bankruptcy chapter 13...yes, we're paying back our responsibilities for the next 5 years ) for under the market value with no cash in the bank, no mortgage company involved, a payment amount the same as our rent, no down payment, and it'll be paid off in 10 years. We didn't ask for any of this...we just wanted a house to rent. And the hubby ends up with a shop that he has only dreamed about. And Koda ends up with a neighborhood full of kids to play with that he has never experienced. How does that work?

2. Just recently moved into this home (July 1st) when we were at a loss of where we were going...you can read about the 30 day journey God provided by starting here.

3. A lady from our past shows up recently on FB as a friend request. She buys us today a set of 4 tires so we can make the journey safely to all Koda's upcoming medical appointments and testing. No we didn't ask...who does that? I'll tell you the grace of God moves with favor on you through people.

4. People are giving on the GoFundMe set up for Koda...they don't have to do that. Yes I realize this is something many would just shake off as well that happens all the time when a kid is sick. Yes, it does but it's still favor. It's God providing when we are in need. We didn't ask for that page, tho it had been discussed with some because people were asking me if we would be setting one up. I said, no...God will provide as He wants. The fundraising page showed up 24 hours later on FB put together by someone who was not in any of these conversations. Thank you to you who have gave, you have NO IDEA how blessed and thankful we are. We hate being in this place much less needing to accept these gracious gifts of your hard work and time.

5. The countless provisions for Koda have been astronomical through how we moved south from Kansas City, and he ends up with services that we never dreamed possible. He has graduated from all therapies...we expected these into high school at least.

6. I was provided a gift of organic seasonings when we started our organic clean eating back in January, and now have just launched a business with them so that I can help contribute to our family income since it's clear the doors keep getting shut for me to work outside the home.

7. Not even a year ago, $1000 cash showed up in our mailbox anonymously.

8. If we write down our budget on paper...down to $0 but we end up with extra money coming seemingly from the sky, how does that work? I'll tell you right now that is only because of giving faithfully with a compassionate heart expecting nothing in return. We give because we want to, and we are cared for every need every single time. I've felt lead to give our only grocery money before; some would say that's ignorant...well, when I did we were given just after that by another source a freezer and refrigerator full of food; more than what we had saved in grocery money. No we didn't ask, beg or anything else.

Sure we've had to utilize pawn shops when we step off our faith walk, got anxious, and forget how awesome God loves to bless us, or we've turned to doing it our way in the past...and every single time; it doesn't work, it's not enough, it just amazes my heart How MUCH He really cares and loves us. This all is very humiliating, I'll have you know; but someone else needs to hear this.  I am driven to share His providing heart even financially, but can I tell you about His listening ear?

(Ohhh yeah, in the past)We've had a group that came to us and asked to take over our utility payments for 6 months while getting a $200 grocery card in the mail monthly by another...no we didn't ask. How does that happen? There's countless stories like this in our lives. We are so humbled, deserving of none of it, but with tucked heads down, we accept so the person giving can receive their blessing.

So let me get to more of the important parts like our daughter's story...it's sure not the financial; We trust Him to do yet more through Koda over the next few weeks. Koda's faith stands right now like this...He feels he doesn't need surgery on the skull because God is going to heal it. No, I didn't tell him that. (Now that takes a lot of faith for me to write that even down...the negative comments are loudly right now in my ear...."God isn't going to do that, God doesn't work that way, God may use the doctors but not just a flat out miracle, blah, blah, blah, You're gonna look like a fool". We'll see. I believe and have been proven every single time that once I step into the uncomfortable; He shows up and shows off. I love Him so for that.  So this isn't my faith here...this is a child's faith in his loving Heavenly Father.

I've been judged for allowing my son to think this way. I've been told to have him stop praying in school before because it doesn't help his social connections. This isn't me or him on the line if none of this works out that way...it's God. His word is delivered just as this...

Matthew 18:2-4(NIV)

2 He called a little child to him, and placed the child among them. 3 And he said: “Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven. 4 Therefore, whoever takes the lowly position of this child is the greatest in the kingdom of heaven.

2 Corinthians 8:2(NIV)

2 In the midst of a very severe trial, their overflowing joy and their extreme poverty welled up in rich generosity.

2 Corinthians 9:6-15 (NIV)

6 Remember this: Whoever sows sparingly will also reap sparingly, and whoever sows generously will also reap generously. 7 Each of you should give what you have decided in your heart to give, not reluctantly or under compulsion, for God loves a cheerful giver. 8 And God is able to bless you abundantly, so that in all things at all times, having all that you need, you will abound in every good work.9 As it is written:

“They have freely scattered their gifts to the poor;
    their righteousness endures forever.”[a]

10 Now he who supplies seed to the sower and bread for food will also supply and increase your store of seed and will enlarge the harvest of your righteousness.11 You will be enriched in every way so that you can be generous on every occasion, and through us your generosity will result in thanksgiving to God.

12 This service that you perform is not only supplying the needs of the Lord’s people but is also overflowing in many expressions of thanks to God. 13 Because of the service by which you have proved yourselves, others will praise God for the obedience that accompanies your confession of the gospel of Christ, and for your generosity in sharing with them and with everyone else. 14 And in their prayers for you their hearts will go out to you, because of the surpassing grace God has given you. 15 Thanks be to God for his indescribable gift!

Proverbs 3 (NIV)

My son, do not forget my teaching,
    but keep my commands in your heart,
2 for they will prolong your life many years
    and bring you peace and prosperity.

3 Let love and faithfulness never leave you;
    bind them around your neck,
    write them on the tablet of your heart.
4 Then you will win favor and a good name
    in the sight of God and man.

5 Trust in the Lord with all your heart
    and lean not on your own understanding;
6 in all your ways submit to him,    and he will make your paths straight.[a]

7 Do not be wise in your own eyes;
    fear the Lord and shun evil.
8 This will bring health to your body
    and nourishment to your bones.

9 Honor the Lord with your wealth,
    with the firstfruits of all your crops;
10 then your barns will be filled to overflowing,    and your vats will brim over with new wine.

11 My son, do not despise the Lord’s discipline,
    and do not resent his rebuke,
12 because the Lord disciplines those he loves,
    as a father the son he delights in.[b]

13 Blessed are those who find wisdom,
    those who gain understanding,
14 for she is more profitable than silver
    and yields better returns than gold.
15 She is more precious than rubies;
    nothing you desire can compare with her.
16 Long life is in her right hand;
    in her left hand are riches and honor.
17 Her ways are pleasant ways,
    and all her paths are peace.
18 She is a tree of life to those who take hold of her;
    those who hold her fast will be blessed.

19 By wisdom the Lord laid the earth’s foundations,
    by understanding he set the heavens in place;
20 by his knowledge the watery depths were divided,
    and the clouds let drop the dew.

21 My son, do not let wisdom and understanding out of your sight,
    preserve sound judgment and discretion;
22 they will be life for you,
    an ornament to grace your neck.
23 Then you will go on your way in safety,
    and your foot will not stumble.
24 When you lie down, you will not be afraid;
    when you lie down, your sleep will be sweet.
25 Have no fear of sudden disaster
    or of the ruin that overtakes the wicked,
26 for the Lord will be at your side    and will keep your foot from being snared.

27 Do not withhold good from those to whom it is due,
    when it is in your power to act.
28 Do not say to your neighbor,
    “Come back tomorrow and I’ll give it to you”—
    when you already have it with you.
29 Do not plot harm against your neighbor,
    who lives trustfully near you.
30 Do not accuse anyone for no reason—
    when they have done you no harm.

31 Do not envy the violent
    or choose any of their ways.

³² For the Lord detests the perverse
    but takes the upright into his confidence.
³³ The Lord’s curse is on the house of the wicked,
    but he blesses the home of the righteous.
³⁴ He mocks proud mockers
    but shows favor to the humble and oppressed.
³⁵ The wise inherit honor,
    but fools get only shame.

Hebrews 11:1(NIV)

11 Now faith is confidence in what we hope for and assurance about what we do not see. 

If you have finances where you have no worry, please Thank God today. If you have healthy children, please hold them tight, love them as it can change on a dime, and thank God. We stand on God's word to get us through because every time we do...He delivers over and beyond what we can only imagine. I'm not arrogant, I just have confidence in the One whom I have faith. Blessings abound to each and every reader. Thank you for blessing me by reading.