Plexiform Neurofibromas

I'm exhausted! It was quite a trip!

First, the preliminary news from the MRI. Cam does NOT have a tethered cord. (YAY!) But the lymph nodes that were of interest most likely AREN'T lymph nodes. The radiologist isn't positive, but it looks like those are really plexiform neurofibromas (aka benign tumors.) The GOOD thing: they haven't grown! But, these kinds of tumors have a high likelihood of becoming the nasty, fast-growing, cancerous tumors. If he has ANY abdominal pain...we NEED to get him in immediately! Dr. S is going to have the radiologist at Shriner's look at it (she's their expert) to make sure it's what they think it is. What does this mean?? We have to take him down to SLC every so often to keep a close eye on these tumors, make sure they aren't growing, and that they aren't causing his spine problems (one is right ON the spine!) This means MRIs for us at least once a year...probably more! Dr. S didn't seem concerned right NOW, but if he has pain, then it could be signs of problems. He says that he'll most likely recommend a follow-up MRI in 6 months.

Otherwise, he's a normal kid! YEAH, RIGHT!

We went down last night and attempted to check into the hotel. The receptionist lady gave us a room, made us some keys, and showed us where to go. We went to the door, and tried our keys. NOTHING! The door wouldn't open for me OR my mom!! I went back to the desk, and told the lady our problem. It felt like the door had been dead-bolted from the inside. She called the maintenance man to get the door open for us. He came, and opened it only to find that the room had open suitcases, and clothing strewn all over the room. UH.... He asked us if they were ours, and we told him no, he began laughing. They had assigned us someone else's room! The maintenance man was SUPER nice, and called the front desk for us, getting us an UNOCCUPIED room! We were REALLY glad that no one was IN the room at the time!

Cam and I ended up sharing a bed, and I slept LOUSY! The kid kicked me in the back the WHOLE night, and I really missed Steve!! We ended up going to bed at 9:30 (which is like 3 hours too early for me...) and I ended up waking up at 5:15! I guess it was okay, I was really close to my required 8 hours, but still!!

We went in for the MRI, and we stopped in the genetics clinic to talk with Dr. S. He took us to the medical imaging to double check that what he was ordering was RIGHT. Then he told us that the forms I had filled out for the other study gave them permission to get copies of the MRIs! YAY!! No need for convincing the radiologist to share!! HE HAD TO!! *Mwhahahahaha*

We waited to go back for about 15 minutes, and waited in the BACK room for another hour and 15 minutes before they took him in for the scan. (My mom commented on how it was a good thing we had to be there at 9:00...at that time it was 10:00!)

While waiting for the scan, a nurse stopped by to tell me that I had some family waiting for me in the waiting room. I was confused, my MOM was confused...I went to see who was there. It was Dr. S's assistant, Heather! Apparently, the nurses had told her that there wasn't any room for her to come back with us, but I was feeling ornery, and took her back. We filled out the paperwork, and they took Cam back for the scan. I waited, since I would have had to take off my watch, earrings, take the keys out of my pocket, leave my jacket there....Grandma took Cam back to the room...he SCREAMED over and over, "I want to go HOME!!" Finally the screaming stopped...honestly, that medicine is MIRACULOUS!! Then we went to eat breakfast, and wait. He was done in 45 minutes! (Much faster than his last visit...4 hours!) It took him a while to come out of the drug-induced stupor, and finally, we could wheel him out...it was 1:30!! We went to the genetics clinic to talk with Dr. S, again, and he consulted with Dr. V, the doctor who initially discovered NF1, and they decided to look at the MRI and give us preliminary results.

After waiting around for another hour, we got the results, and we were off! I drove both there and back, but it wasn't so bad. It rained a lot, and at one point the wind was so bad that I couldn't see out the window (with the wipers going...) but we made it back in one piece! I even got to listen to a book on the drive. Made me laugh and cry!! (GOOD BOOK!)

Now, I just want to get home to my bed...that's comfy, soft, and filled with my SWEET husband! But I have to wait while he's at play practice, and while I type this up! Thank you all for your thoughts and prayers for my little boy! :)