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!

(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.