NF1 on TV, MTV

Tonight, MTV's show "True Life" is spotlighting 3 teens who are living with NF1. I'm very interested in how they portray this disease, and since my own child has NF1, I will be watching with great interest.

Update:

I've tried recording it off of TV, TWICE! Both times it was NOT the show. :( So now I'm watching the full episode online. Very facinating. (THIS IS YOUR WARNING: They show actual surgical proceedures on this show, it could be quite graphic at times. PLEASE watch it with care.)

Annual Genetics Appointment

Today was our marathon genetics/doctor appointment day. It was CRAZY!

Geneticist:

I wasn't too worried about Cameron, except the new growth on his cheek. Instead we found out that Cam has hyper/over-active reflexes. They were so over-reactive today that the doctor worried that the tumor on his spine might be causing the neurological side-effects. He thought it would be a good idea to see a neurologist. Unfortunately, neurology is usually booked for months in advance, and since we're from out of town, he didn't want to make things difficult on us coming back for another appointment. He called them for a quick consult to see exactly how concerned we should be. When he came back to the exam room he looked relieved. He told us that Cameron's reflexes WERE tense, but they weren't something to worry too much about...YET. He said, given the circumstances, we should be fine seeing the neurologist next year when we do our visits.

And about his cheek, tumors that grow on the outside, or close to the skin like the one on his cheek and on the bottom of his foot, they RARELY turn cancerous and if anything, they cause cosmetic problems, but no pain or BAD things.

NF1 Study:

Sometimes they have to take his blood, and he freaks out. They didn't have to do hardly ANYTHING with the kid, just x-rays. Thanks to this study we DO know he has a very VERY slight scoliosis (caused by the plexi-form neurofibromas on his spine) and we do need to keep an eye on it, but nothing big. *phew*

Opthamologist:

This was almost completely routine and relaxing. We knew what to expect (initial eye evaluation, doctor checking his vision, dilatation drops, wait, another check on the back of the eye, new prescription, outta there...) Those danged dilatation drops make him scream and squirm EVERY time. Punk. Instead of getting just ONE drop per eye, dealing with the burn, then letting it go, I and the nurse had to hold him down and PRY his eyes open, dropping sometimes 3 drops on the eyelid before it got IN his eye.

Overall, his eyes have made a VAST improvement. Maybe the fact that we make him wear croakies on his glasses so he HAS to look through the lenses instead of over the top has made the difference, ya think? The eye doctor was VERY impressed with his vision!

NF1 Study:

This one was a study on movement and general "clumsiness." This was in a completely different hospital from the ones we usually visit, and was a whole new experience. Cam thoroughly enjoyed doing THIS study...no poking or prodding, and he got to exercise and PLAY! The guy who was helping him was SO patient (more so than I would have been, repeating instructions over and over...) and by the end of the study, the two were "buddies."

Watching this study, I learned how truly uncoordinated Cameron is. Not only that, but he just CAN'T do certain things. They just don't compute in his brain. He did the best he could, and had a ball!

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The whole day was busy, and a blur....I'm glad it's over. Our only homework was to call our pediatrician and have HIM check on Cam's reflexes and the scoliosis. That way if anything major happens, he's up to date with the specialized doctors. That, and our usual admonition to take any pain that Cameron has, that keeps him awake at night and that lasts for DAYS, seriously; and to let the geneticist know; and take him in to the hospital immediately.

A Little Worried...

For about a month now, I've noticed that Cameron has had a small bruise on his right cheek. At first I thought nothing of it, after all, he'd just crashed and burned on his bike, it's something that is TYPICAL of a bike wreck.

Well, after his other wounds have healed, including some pretty nasty scabs, the bruise is still there. Deep purple and sitting in the middle of his face.

I told him last week that if it wasn't gone by this week, I was probably going to call the doctor and find out if there was something we needed to do about it.

Today at church I noticed his left cheek isn't as full as his right one. While feeling his face, (can you imagine THAT in church?) I noticed his right cheek, right above the bruise is lumpy and feels "tumor"-like.

Oh, I hope it's not that, but I have a feeling that he's got some more plexi-form neurofibromas growing on his cheek.

More to come when I know what's TRULY going on.

Next Stop...Complaint Central

Because I'm not quite done complaining yet...

After posting on here last night, I checked my voicemail to see who I'd missed. The first unheard message was from my friend, L. (You remember her, right? The one I had to STOP babysitting for!?) Anyway, she was wondering if I wouldn't mind being her "back-up" babysitter. Are you KIDDING!? Uh, NO!! Now I have to find a way to tell her. Doesn't being someone's "back-up" mean that they could dump their kids on you without prior knowledge?? That's the problem I had with her BEFORE!! I'm dreading her next call (and I know her...she WILL call me again, and again...) Honestly, I'm so nervous about it, I dreamed about it ALL night long!! (Although, I DID sleep better!)

I also remembered something that can help put into perspective, what's going on with Cam. While I was back in the recovery room with Cam, my mom wasn't allowed in the room (too many parents in a cramped room...not good!) So she sat by a lady and her son who had been there before we got there. When Dr. S went to double check Cam's order, he waved at them. My mom, being who she is, sat down to talk. She found out that the lady AND her son both have NF1, and the son, who was almost 17, had a football sized tumor in his belly last year. It was the one that had turned nasty...fast-growing and cancerous! He had gone through the surgery and chemo, and they were there for an MRI to make sure he didn't have anymore! When I heard THIS story, I freaked!! This could be me! (It also might NEVER happen to me...) Just knowing that Cam has MORE tumors inside scares me. How am I to know now when he complains of a tummy ache that it's not just him being sick, wanting attention, or these DUMB tumors?? It's all a bit overwhelming, and frustrating too! I guess I'll just deal with this new thing the way I always have....deal with it, learn from it, and go ON with my life!

Update: And as a NEW feature to my blog, since NF1 is SO much a part of my life now...I've got links to information about NF1 in my sidebar.

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! :)

Crazy Monday

My Life Monday will have to wait for me!
Today I'm off for Cameron's second MRI. I just looked online at the hotel I booked a spot at, ugh...I should have looked there FIRST! It's kind of a crappy place, but I guess you get what you get when you book a room for only $39!! Sheesh!

I had to take Steve to his pneumonia doctor visit today. It went well...although when we had scheduled the appointment we completely forgot that Cam had Spring Break! DUH!! We were just a little distracted! Anyway, he's doing well, but still has a major cough. So the doctor prescribed him some heavy duty cough meds. We went to the bank (hooray for cool doctors who pay YOU to see them!) and then made a trip to the Walmart pharmacy. They told Steve that it would take 25 minutes for the prescription to be ready...it was already 10:30. I guess he wasn't thinking, because he had to leave town at 11:00 to get to work for today (which I didn't realize was OUT of town today!) So we wandered around for the time, and the when it was time to pick it up, the pick up line was HUGE, so we decided to just leave, and he'd go back later to pick it up. We hurried to my mom's house and he dropped us off and was off! What a punk....I can't quite read his mind, yet. Guess that's something in our marriage that we need to work on!

Tomorrow we have the MRI, and I'm going to attempt to convince the radiologist to share his information with U of U, so we only have to do ONE scan. I hope I can be convincing!

Here's a funny story to get you by:

Yesterday at church it was CRAZY!! I substituted in Primary for the chorister, and I was really excited. I had planned on dropping off the poster that she made IN the primary room before I went to sacrament meeting, but when I opened the door I noticed the room was FILLED with people. Uh...I had forgotten there was a class going on!
Then I went to Sacrament Meeting...poster in hand, and it was just me and Cameron (Steve had just gotten off work and was sleeping.) I found a bench and sat down. While waiting for the meeting to start I waved to a little girl who I have a special spot in my heart for. (Our first week in that ward, she had CLUNG to me in the nursery room. I guess she thought I was her mom, and she didn't want to be alone!) She instantly changed courses! She came over and said, "I want to sit by YOU." I tried to convince her that sitting by her family would be better, but she was NOT easily persuaded! Her mom came in and had that look on her face that said, "Where is my daughter!?" I showed her where she was, and she asked if it was okay if she sat by me. I said that was fine, and Becca was INSTANTLY attached to me. For the rest of the meeting I was distracted by her laying on me, her fighting with Cam, or her playing dead across the WHOLE bench! Yeah, it was fun! But when her dad got up to bear his testimony, she decided that she could sit with her family again! She's so funny!

Then in Primary, the kids were WILD!! I got a chance to talk to my friend who is moving. I'm really going to miss her! I did singing time, and then I went up to the nursery. I guess there was a sign on my forehead that said, "Today is the day for sitting ON or BY me." As soon as I went into nursery the kids attacked!! I was given the biggest group hug I think I've ever had!! I began by singing "Jesus Wants Me for a Sunbeam" and I try to do an action for them...keeping them entertained. Instead of jumping out of their chairs, I make them make "sunbeams" with their hands, and while I was singing and doing the action one little girl came up just a little TOO close. I nicked her chin...causing blood! Uh, yes, I'm the one who abuses sweet innocent nursery kids. She wasn't fazed by it, but by the end of singing time, I was mauled by 5 kids at ONCE!

The funny thing about this WHOLE experience?? I loved EVERY MINUTE of it! I was completely in my element. I really MISS Sunday primary! I hope that SOMEDAY I will feel the same way about my scouts! Someday....

More Tests for Cam

A few months ago we took Cameron to see his geneticist at Primary Children's Medical Center. He had to get an MRI....the reason it took so long was because they had to sedate him. It was a very long day, and at the end, the doctor told us that there were 2 major concerns that the radiologists had with his MRI. He had a fatty deposit at the base of his spine. It could be nothing, or it could mean that he has a tethered cord. Causing all sorts of problems with his lower body muscle control, and eventually problems when he gets older.

The other thing they were concerned about was his lower lumbar area. They thought it might be aggravated lymph nodes, but they can't rule out a tumor. So his doctor recommended that we go back in 3-6 months. I was not really happy with this outcome, but what else could I do?

It's been 3 months. And when I was talking with my service coordinator yesterday I mentioned that the geneticist said that he wanted to see us in 3-6 months, and I'd probably call him that day about it. After she left I was just sitting there when I got a call from, who else? The geneticist. Coincidence?? Who knows!

He told me the results again, and told me that after discussing it with his supervisor and the radiologist they'd like to do another MRI. He had mentioned maybe doing a CT scan (no sedation), but after discussing it, they decided that an MRI would be best because they could also do a cine (pronounced: sinny) test where they could determine if he's got a tethered cord. BUT he also wants to sign us up for ANOTHER study where they'd look at the scoliosis a bit more. I don't know what all is included in THIS study, but I agreed to sign up for this one as well (the fact that THIS one pays made it an easy choice!)

It's just super annoying to not have specialists IN MY AREA! Not that SLC is that far away, but it's far enough. Enough that it's 6 hours plus of driving all in one day.

I'm thinking that THIS time, I want to stay over night IN TOWN!! (We stayed with my sister in Logan for the first trip...STILL took us forever to get to SLC the next morning!) I'm going to try and convince my mom to help pay for a hotel room! (My mom goes with us to EVERY appointment...Cam uses her as his security blankie...)

NF1 usually IS something that runs in families. BUT it's a dominant trait...meaning that if Cam had gotten it from me (my maternal grandmother DOES have NF1) my mom and I would BOTH have to have it, and we don't. His is a mutation. If you're familiar with genes at all...his is called a gene deletion. Basically, he has NF1 because in his DNA there is a whole gene missing that turns OFF the NF1.

When we go to do these tests we prepare him by telling him that some nice doctors are going to be helping him. His FIRST question is always, "Are they going to hurt me?" The last time we did the stuff for the study they told me that they had to draw some blood. I warned him about it...BIG mistake!! The kid freaked out when ANYONE came into the room...ANYONE!! Then when we went for his MRI and I knew they'd have to do an IV...I didn't warn him...it went MUCH smoother! The thing about the drugs they give for the MRI is that it works IMMEDIATELY. Not even a minute had gone by and he was asleep! He was way loopy afterward, but didn't have a bit of a problem...except for walking and standing up straight! He's a good kid at his appointments.

I'm going to try and set up the appointments for when Cam is out of school...I printed off his school's schedule, and we're looking at either March 1st and 2nd or the last week of March. Either way, I'll most likely be there in March. (Hopefully the roads won't be so bad!)

So here we go again! Luckily the doctor doesn't think he has the fast growing bad tumors, but he doesn't want to take any chances!

Getting Things Done

I'm so excited!! I've been getting things done all day today. I didn't have to babysit (my rare day off...) so I did all of those things I've been neglecting lately. I called the geneticists to make an appointment for Cam for next month, called my service coordinator (so I can get my reimbursement this time), decluttered my kitchen white board, folded AND put away my laundry, got paperwork from the school, turned it in to the people who need to fill it out, took Cam to therapy, paid some bills, found out when my doctor's appointment was for the week, and got school clothes shopping done. I'm officially done! I probably won't be this busy again for a LONG time!
Cam has to see the geneticists in Salt Lake every year now because he was diagnosed last year with NeuroFibromatosis. His form of it is very mild. He has no tumors, but he has multiple cafe au lait spots. I see more of them everytime he takes a bath. I'm going to be asking them if it's cause for concern or not and he'll also be having his eyes checked by their opthamologist. They only have genetic clinics on Tuesdays, so he'll be getting out of school for a day. I'm not sure if he's up for that or not, but it doesn't REALLY matter...he's going to be missing school whether he likes it or not!

We're also on our way to getting the boy his in-class aide. I'm so excited for that. I definitely think he'll benefit from having an aide!!

And on one more quick note...my bestest friend in the whole wide world has now joined blogger. I'm so excited! I can't hardly keep it in! She lives far enough away, that I don't get to hear from her that often, but now I'll be able to peek in on her life whenever she updates!! So go visit Kim at luvin-the-world-lambiestyle!!! (Can you tell I'm excited?!)

Oh, and for those of you who were wondering, I'm much cheered up now! :)