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.
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