...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!
