Back to Salt Lake

Distressing call today during my recovery nap! It was Dr. S, Cam’s geneticist from yesterday. He had reviewed the back x-ray (they just x-rayed his spine...to see if there is a chance he could have scoliosis) and Cam has a slight curvature of his lower spine.
Things got upsetting really quickly.
He told me that we need to get Cam BACK to Primary’s for an MRI. The concern is that, while most of the tumors that kids with NF1 get are benign and completely harmless, there’s a chance of getting another type of tumor. This kind is the bad kind...the kind I didn’t really think too much about when we were having our conversations yesterday in the clinic, I think I was in denial. With the kind of NF1 that Cam has, he has a slightly higher chance of getting this one (don’t ask me the EXACT name...I couldn’t tell you.) It is highly cancerous and grows at an accelerated rate. Now, what does this have to do with a slightly curvy spine? These kinds of bad tumors grow next to the spine and tend to push it out of alignment. I had mentioned to the doctor that Cameron tends to whine to us that his tummy hurts, and we can’t always tell whether it REALLY hurts, or he’s trying to get sympathy for something, but he said that we should take his complaints seriously, and just as a precaution, check to see if he’s starting to grow a tumor which is causing this bent spine.
As he’s telling me all of this information I was speechless! In my mind I was thinking the worst. "My son has this tumor, he’s going to die from this, and I gave it to him!" I know, I know...irrational thoughts! But these are the things going through my mind. I asked Dr. S how urgent it is that we get this test done. He said he’d like to see it done as soon as we could...within the next 2 or 3 weeks. He told me that he’d get the information to the MRI center, and he’d call me back with the information.
As he hung up, I looked at Steve and we had a whole conversation without words. He could tell something was wrong, but didn’t know the exact details. I filled him in, and then I HAD to call my mom. (She’s the one who goes with us to these appointments, and the one I turn to after Steve when I’m distressed and upset!) I told her the basics of the conversation, and she told me that if we had to go, she’d be there with me. I told her I was waiting for the doctor to call me back, and said good bye.
The tears were just rolling down my cheeks...my voice was cracking and my sweet son came over to me, and told me, "Mama, I’m gonna wipe away your tears." And then he gently did so! That didn’t help the flow of tears, but it did soften my heart a bit!
Doctor S called us back with the phone numbers and said that if we couldn’t get in with them in the next month, call him back immediately. I called the MRI people and got it scheduled for November. Then they told me that I’d have to register him and gave me THAT number. After all was said and done I was emotionally wiped out. I had a blank stare for a long time tonight. I kept internalizing, worrying, and mourning. YES, I did say "mourning!" I worry that I will lose this sweet boy who has been my entire life for the past 6 years. I fear finding out that he has this tumor, and what it will mean for my family. The one fear that is foremost on my mind is that he will slowly fade away, getting sicker and sicker, and I won’t have ANY way of helping him. I know I shouldn’t be thinking this way, but I do. I should just let the doctors do the tests BEFORE jumping to conclusions. I just have a hard time doing so. After all, he could be TOTALLY healthy, there could just be a curve in his spine. It could just be another one of those things that makes him him.
The interesting thing about this whole thing is that we wouldn’t even have a clue that he could have this problem if I hadn’t agreed to let them do this research using Cam. They don’t normally go around doing x-rays, bone density scans, blood tests and everything on everyone who comes in for a check-up. I just hope that if he DOES have anything, they will be able to treat it quickly and safely. I’m just so worked up over the whole thing...I don’t quite know what to do!

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! :)

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!

MRI Trip

Our trip was LONG and not really very informative.
I'll try to summarize my day, again, it was LONG!
Sunday night we informed Cameron that he couldn't eat ANYTHING when he woke up the next morning, so we spent the entire evening feeding the boy anything his heart desired. Then we put him to bed...hoping for the best.
Early the Monday morning I woke up...feeling like I should get up, even though the alarm wasn't set to go off for another 10 minutes. As soon as I stepped off of my bed, I heard Cam running, full speed, up the stairs. I saw his face was covered with chocolate. NO! HE DIDN'T! But he had! He'd eaten some of his left-over Halloween chocolate, and after some coaxing, he admitted to eating some. I was so furious with the child! I put him in the tub for his bath and went into my room to cool off.
I was SO mad! Every once in a while I'd hear him call out for me. Then after about 10 minutes he called out, "Mama? Am I having time-out in the tub?"
I had to admit, that broke me down...I couldn't stop laughing! So I allowed him to get out!
We left town about 8:00, and drove and drove and drove. We arrived at the hospital with 20 minutes to spare. We checked in with the medical imaging place, and watched as Cam bounced from toy to toy in the waiting room. (Have I mentioned my LOVE of this hospital?)
We were finally called back, did all of the usual mumbo-jumbo, and told the nurses that if they wanted a semi-happy patient, they should do the IV at the last possible moment. (And they listened! I SOOOOO love this hospital!) They had him restrained while they attempted to put the IV into his hand. The first attempt wasn't working, so they had to do it a second time! The second time was successful! And they instantly administered the sleeping medicine to him. It didn't even take a full minute for him to fall asleep. As they took him away I commented to my mom that I wouldn't mind giving him that stuff EVERY night when it was bedtime. (OF COURSE, I was joking...really...I mean it!)
Then the nurse told us that we'd have to wait in the waiting room. We told her that we wanted to eat lunch, and she said that was fine. The procedure was going to take 30 minutes, and they'd let him sleep an additional 2 hours after that, so we had plenty of time.
We ate in Primary's cafeteria (the better of the two hospital cafeterias that we'd eaten in!) and went into the waiting room for the next 3 hours! After a while I worried about what was taking them so long to call us back, so I asked the receptionist. She called back to the recovery room and apparently they had called us back over the loud speaker...but we hadn't heard ANYTHING! So we gathered our stuff (I had been reading a book, and my mom was crocheting a baby dress, plus we had Cam's shoes, glasses, and stuff...) and hurried to see how he was doing.
The nurses told us that he didn't have anything wrong happen with regards to the anesthesia, but now that we were there, we could wake him up.
We took blankets off of him, shook him, called his name and after nothing happened we then looked to the nurses. They had gotten a hold of Dr. S in the meantime, and he wanted to talk with me on the phone. He told me that he hadn't gotten a tech to look at the results, but he'd get right on it. As I was walking back to his bed my mom and the nurse were pressing a cool, wet washcloth to his face. It made him SO mad it finally woke him up.
The medicine they gave him was so strong that the poor kid couldn't control his body at all! They told us it could stay in his system for 24 hours! He was just like a rag doll! I asked him if he needed to go to the bathroom and he did, but I had to carry him there. I sat him down on the toilet, and he was so out of it with the drugs he was laughing at ODD things! When we came out, the doctor was on the phone for me AGAIN. I was still holding Cam, so the nurses pushed out a chair for me to sit on and I tried to hold Cam and talk at the same time.
It was one of the hardest things...trying to carry on a civilized conversation and holding a floppy 50-pound baby! The jist of the conversation was that there are a FEW things that they want to take a closer look at: fatty area around the tip of his spine, and a few lymph nodes of interest...but the GOOD thing was NO BAD TUMORS!! *doing a dance of joy!* They weren't "official" results, but they're fairly certain that he's fine! They recommended another scan, either MRI or CT, within the next 3 to 6 months. The thing about what they saw was that there really isn't anyway to know whether the things of interest are causing problems, growing, or just fine...because this was the FIRST MRI he's had. But Dr. S told me that there really isn't anything to worry about. I was SO relieved!
Then after we FINALLY got Cam more awake we were able to check-out and leave for home. By this time it was after 5:00, and Cam hadn't eaten much all day! So we caught a "McGonalds" on the way out of town, and a Wendy's for me and my mom, and drove home.
I was so exhausted and ready to be home! My mom carried Cam inside my house for me, and he tried to get up to get something, and he fell over backwards...he was STILL dizzy and walking like a drunk. I decided that I would keep him home today, just to make sure he didn't have any problems and I knew all was well.
He probably SHOULD have gone to school today, but he stayed home and pushed his mama's buttons ALL day long!
The other nice news is that I'll most likely be DONE babysitting those kids that drive me crazy by Thursday! I'm so excited! But now, all I want to do is SLEEP! So forgive me for not visiting you lately, but I WILL catch up soon! (I hope!)

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.

Synopsis of My Weekend

This last weekend was a good break for me! I really needed it after all of the things that went on last week. I'm REALLY looking forward to NEXT week, simply because I only have to babysit on Thursday and Friday....that's it!! That's enough to make me happy to go through this LONG week before my blissful week of 2 days!

The reason I'm only babysitting for 2 days is because Cameron and I are going on a special trip that interferes with my usual babysitting schedule...we're going to Primary Children's Medical Center for Cam's yearly genetics check-up. We go every year, but this year we're going later on than we normally do. Usually we go in the middle of the summer, but our summer was SO packed that we had to put it off. And since we have to make the LONG trip to Salt Lake from Idaho we had to get all of the kid's appointments made for the same day...that way we're only making the trip ONCE! Getting it all coordinated was a pain, but it will be worth it! For the most part, they're just keeping tabs on him...checking his blood pressure, making sure his CAL spots are normal, checking him for tumors...that sort of thing. I'm hoping that he won't need extra tests! His main concern when we tell him that we're going to the doctor is whether: 1. Is grandma going? (She is.) and 2. Are they going to hurt me? Here's hoping they won't!

Yesterday we finished up our last week of competition for our Singing Time Olympics. At last count the Junior primary was kicking butt...571 points to the Senior primary's 546.5. Yesterday I felt sorry for the older kids and gave them the opportunity to get 40 points per song. That wasn't such a good idea! Thanks to those extra points, the senior primary technically won the olympics! I discussed it with the Primary president and one of the counselors, and we all decided to make it closer in points, because without those "extra" points they would have most likely tied! Not only that, but the Junior kids try SO much more than those older ones! SO, our final "tally" was Junior primary: 768 to Senior primary: 768.5! (Yes, we had the seniors win by 0.5 points!) But EVERYONE will be getting a medal on the day of our Primary program. So for now I'm collecting the silver tops and bottoms from frozen concentrate juice containers, gluing ribbon to the lids, and making medals out of them. Then I'll glue (not hot glue!) candy to the lids and make a cool award! I just need to locate the lids now! I'm going to put an announcement in our ward bulletin starting this week! I need about 58 lids...here's what I get for being overly motivated!!

I also did BOTH singing times yesterday. It wasn't too bad! Usually I have to plead and cry to get the senior primary to sing, but yesterday they sang better than I've EVER heard them sing before! I was so proud of them! (I told them that too!) Now my next challenge is finding a few more soloists for when we sing Follow the Prophet. We're having one child sing one verse, then another one sing the next verse, then we're ALL singing and signing the chorus. Repeat 2 more times for a total of 6 verses! (So it's 2 verses and then the chorus...) And we're not just singing the verses from the Children's songbook either! We're singing verses about Nephi, Helaman, Samuel the Lamanite, Joseph Smith, Brigham Young and Gordon B. Hinckley. Our program is going to be so fun! I'm excited!

Last year for the program they had a lot of smaller groups singing the songs...this year we only have ONE solo, and then the Follow the Prophet thing. Other than those songs the kids are ALL going to sing! That's what I love to see! YAY!

Now it's back to "real" life. I'm going to enjoy myself today! Then it's back to work tomorrow! UGH! I'm going to try and NOT think about it!