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!
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