Keegan/Marshall Dixson's Journal
MIBG Complete (results are in)
Written Aug 9, 2013 10:24pmKeegan did pretty decently on his trip to the University today to get his MIBG done. They couldn't find us in the computer though at first. They acted like I was an idiot and had him at the wrong hospital. I was like ... umm I've been doing this for 4 years, TRUST ME, I KNOW where I am, and why my son is here, and who sent us, and who we are supposed to see and why the Women and Children's Hospital sent us over here, don't treat me, like I'm dumb. I told them who to call and who to talk to and guess what they got that all sorted out. As soon as the person at Nuke Med picked up the phone she asked the check in receptionist lady if Mr. Keegan was down there trying to sign in, she said "well, yes he is that's why I'm calling" HA!
He's a pretty awesome 4 year old even doctors at another hospital know him by name and have him all RSVP'd in LOL Too bad the rest of the hospital didn't get the memo a Super Hero was coming there. LOL
We got upstairs to Nuclear Medicine. Keegan literally jumped right up to the MIBG scanner bed ready to go.
He did ok...for the first few seconds anyway. He wasn't digging the whole "What do you mean I have to look straight up at this + sign thingy and not move my body? Are you NUTS?!" He's 4 and has a slight case of rest leg syndrome combined with being a 4 YEAR OLD BOY. It was a liiiiiittle difficult there for a bit, and even one of the techs had to come out and talk to him. I thought for sure they were just going to scrap the scan and send him back to the Children's Hospital.
However, once the scanner was no longer over his head and he could watch My Little Pony on the Kindle he was good to go. He did pretty decent at lying still after that, but the further it went down his body he got a little twitchy and itchy (yep literally, he was itchy). He couldn't decided if he wanted the blanket on our off or his arms up or down.
They had to rescan his head/chest area and he was just NOT ok with that. He almost had a mini Keegan melt down, thankfully that was avoided, it was very very very mild. He DID, however, let us know how very unhappy he was with this by announcing in his angry voice: "I HATE THIS STUPID SCAN! I WANT TO BE DONE!" Can't say I blame him.
Had to bribe him with a cheeseburger (and next time I MUST remember to order the boy EXTRA pickles as apparently he REALLY like pickles and 2 pickles per sand which is NOT good enough LOL) And I had to promise him a chocolate milk and some stickers before he'd agree to finish the scan. *sigh* It gone. That's all that matters, even if I had to bribe the bugger a little.
Generally not a fan of bribing him to get him to do things, but sometimes you have to do what you have to do to get them to do things they REALLY REALLY need to do. Grabbing him and forcing him to lay down would have ended VERY badly and NO scan would have been done.
We were both glad when the scan was done.
He got his McDonalds and we headed home.
I found out that the CT scan and MIBG are both NORMAL which is awesome news!! His urine labs won't be in for a few more days and I was told no news is good news so I'm not expecting a phone call about the urine labs and I'm ok with that. They didn't expect to see anything especially since the scans came out good.
Now Keegan doesn't have to go back until February! Yay!
One stress done :)
The boys are also all ready for their last year of preschool, the only thing they need now is a pair of new tennis shoes a piece and they will be totally set for school to start.
Yay for NO GLOWS and back to school ;)
Written Aug 9, 2013 9:29amThis has been a scan week for Keegan. He had his CT scan on Wed and the MIBG scan is today. His father went with him for the CT scan. We don't have any results yet from that scan.
For his MIBG scan they are sending us to another hospital. We used to go to the University back when Keegan was first diagnosed. A few years ago the children's portion of that hospital was transferred to another hospital, the University of MO Children's or Women and Children's as it is called. However, the University just got a new MIBG scanner, so the Children's hospital is sending us over there for Keegan's MIBG scan.
The University does NOT have any child life specialists, or anyone who deals in pediatric anesthia or kids for that matter. I asked a million questions when on the phone with them the other day. The answer was, we don't have those things, but we have lots of staff that are parents. (yeh, well...that doesn't exactly make me feel better! It's one thing to be a PARENT and another to deal with a child who has been run through the mill since he was 2 months old!)
We could have chose to stay at the Children's Hospital, but they wanted Keegan to get the best possible scan, and that is at the University, so I figured we could at least give it a try.
Keegan is not sedated for this nearly hour long scan (45min but sometimes it's 50min). He has to lay very still, no fidgeting, no wiggling etc. That's hard for a 4 year old, but he has managed to do it.
However, the Children's Hospital at least has child life specialists who KNOW how to help kids going through stuff like this, and can help keep him busy and happy during the scan. Which is VERY important in order to get the best scan possible.
I do not appreciate people taking my CONCERNS and saying I am "Coddling" my son and he needs to "learn to be around new people". My son is far from coddled, and he's had nothing but "new people" in and out of his life since he was 2 months old! New people kind of freak him out at this point in time. Especially when they are poking him in a machine that comes down like a sand which on top of him, this machine hovers like half an inch above his body and he has to lay like that for like 30min. THAT would be rough for an ADULT!!
I get REALLY sick and tired of people giving me "advice" involving my son and his cancer scans and the stuff he's been through. I know my son better than anyone else, I know what situations are upsetting to him and which one are not. I know when it is OK to gentle push my son into a new situation with new people and when it is NOT ok to just PLUNK him into a new situation with new people.
My kids are far from coddled, but they DO know that Mommy is there for them and that I love them very very much and will do whatever I can for them. THAT is not coddling, that is being a GOOD MOTHER!
I generally try not to disrespect people, but this morning I DEFINETLEY wanted to rip someone's head off!
Keegan has had MORE than one negative experience with scans, and they were BOTH with people he DID NOT KNOW in a strange and new place to him.
It was a very hard decision to make the other day when I had to decide if I wanted to stay at the Children's Hospital (with a scanner that isn't "new" but it doesn't do bad, it still gets a decent image) or send him to the University where it's all new for a scanner that IS new and gets an even better image. Keegan goes for scans every 6 months. A LOT can happen with cancer in 6 months. My husband and I talked a lot about what we thought we should do, and ultimately we decided having the best scan would be for the best. So we went ahead with plans to go over to the University for the scan.
Does that mean I'm not going to be worried, and have apprehensions? NO! I think I have MORE than the right to be worried and concerned.
Keegan has dealt with a lot of anxiety and some behavioral issues over the past couple of years, and the answer to these issues is not just "whip his butt" and "don't coddle him" which are always the lovely tidbits of "advice" I get from other moms who have NEVER HAD a child go through what Keegan has. I do not feel whipping your child is the answer to every problem.
I may be "young" (I'll be 29 in October) but I'm not an idiot.
I used to put up with people's crap when it came to my kids and them thinking they knew better than I, but since Keegan's cancer, the inner grizzly bear is out and ready at all times. If you don't have a child with cancer, please keep your "advice" to yourself when it comes to my child(ren). Keegan's cancer didn't just affect my son, it affected our whole family.
The picture with this post is from a previous MIBG scan. This is not even the closest that the scanner comes down on top of him either. You have NO idea how hard it was for him to lay this still for that scan! They try to wean kids off of being sedated for these scans as soon as they can. Some kids can handle it, some kids can't and Keegan has worked very hard at handling it and even as he does well, he still struggles.
One more person says I'm "coddling" my son I may just clobber you. Being concerned for your child is NOT coddling.
Written Jul 13, 2013 6:21pmOur family is, for the first time ever, planning a REAL family vacation. We've never actually been ON a real vacation before. Generally our vacations insist of spending a week at my Mother's house in for the 4th. We didn't get to do that this year as my Mother is in the process of moving, so we stayed home this year to have our 4th (which was a highly hysterical, unusual, everything gone wrong kind of 4th of July that we will laugh about later...much later.)
However, my mother in law recently moved in with us due to her health and we didn't like her living so far away and on her own with no friends or family to check in on her. So she is living with us. She decided she wanted to take all of the grand children to the Omaha Nebraska zoo. Which is a place we've all been wanting to visit for quite some time.
Too bad my mother in law and husband do everything way to last minute and drive me bananas. We'll get it all done though. I may not have any sanity left over by the time it is all done, but it will be done none the less.
The kids are really looking forward to the zoo trip and seeing the dinosaur exhibit that they have. I'm actually pretty darn excited about that to! We also are excited to see the sharks!
While we've been planning for this trip we've been trying to keep the kids busy with activities such as visiting the local drive in movie theater (watching Dispicable Me, what a great night we had!)!
We've taken them to the carnival this summer and will be visiting the Fair when we get home from our trip to the zoo. We've went to the lake a couple times this summer and enjoyed some swimming. Kams has enjoyed time at the local library participating in a craft class. The boys will be old enough to participate next year. While Kams is in the craft class the boys and I just hang out in the kids section of the library where Keegan is really enjoying learning how to use the children's computer, he's getting pretty good at it.
We've gone to car shows, and the local college had an "Art on the Block" event where the kids got to spray paint a car and paint some art on some cool tiles. They had so much fun doing chalk drawings on a side walk for a contest as well.
August 7th and 9th Keegan has his next cancer scans. He said he's ready and he's a big boy and the pokes won't hurt him. We are planning on taking him and his brother and sister to Bonkers after his MIBG scan (he has to ly still for nearly an hour for that scan, and he is no longer sedated for it). I think they will enjoy this giant indoor play area! We haven't ever been there yet so this will be something new for them.
We are still planning on camping out in the back yard this summer, we'll see how that goes! As well as planning a mini fishing trip for the kids. They really want to go fishing, but that's hard to do when we haven't gotten them fishing poles yet! Woops!
We have enjoyed a lot of things this summer, we attended a fun Fathers Day event at a local Church and the kids all road a real live MONSTER TRUCK! They had a BLAST! They really enjoyed them selves and so did my husband. The kids also got to ride horses. Keegan and Kams thought riding the horse was so much fun, Marshall enjoyed it but he said he wasn't sure if he would want to do that again. They had the opportunity to watch motor cross guys do stunts on their bikes, and to watch BMX riders do stunts too. Keegan was in awe. He looked at me and said "MY BIKE CAN DO THAT?!" I was like....oooh boy! Here we go! He really really wants a motorcycle and wants to do tricks and stuff. He's going to be my "wild child". I told him he can do anything he sets his mind to if he works really hard at it. He just grinned and said "OK MOM!"
We also attended an early 4th of July event put on by another Church in town for the community. The kids had a blast chowing down on cotton candy, pop corn, show cones, hot dogs (Marshall really loves hot dogs BTW), and lots and lots of water melon. At the end we saw a fantastic fire works display and the kids had fun with us as a family watching the fire works and also playing with their friends. Seeing their little faces light up while watching the fireworks is always a wonderful feeling. I remember 4th of July 4 years ago I was fretting and worrying about my little many who was so uncomfy and you could tell something was wrong but his pedi just didn't "see it". I didn't enjoy the 4th that year I was too busy worrying about my son, knowing his issues were more than just constipation and gas.
Lately Keegan has complained of tummy pains, pretty sure the last bout was just due to gas issues, and hoping the rest is just as simple as a constipation issue. However, with all he's been through any little ache or pain can be scary because you never know it might not be a "normal" ache or pain. It's been nearly 6 months since his last scan, soooo much could have happened in 6 months.
The kids are beyond ready to go back to school, and I am so glad that Keegan's scans are before school starts back up. Kams starts kindergarten and the boys are in their last year of preschool! My how time flies. Hard to believe Kams will be 6 in September and the boys will already be 4 and a half in October! Time sure does fly by.
July 31st is Keegan's 4 year diagnosis date. July 10th 4 years ago got this whole journey started with a visit to our local ER, where I finally found a doctor that would listen to me. The doctor's at the Children's Hospital worked so hard to find answers and July 31st is when we heard those fateful words "Your son has cancer". He had only been 3 months old for 4 days! My head reeled. At the time I knew nothing about Childhood Cancer other than what I had seen on St. Jude's commercials. I didn't know babies could get chemo or radiation (thankfully Keegan never needed radiation) but he did have 4 cycles of chemo and 2 surgeries all before he was 9 months old. I didn't know tiny babies could go through so much. I cried and I cried and I prayed and I prayed every single day and night. So thankful for the amazing Childhood Cancer "FAMILY" I have met on this journey! I've met very few of you in person, but you "get" what we have been through, and you all mean so much to our family.
There isn't as much to "update" anymore like there used to be, so I am sorry for not posting often. Keegan and Marshall are just enjoying life right now and thriving as wonderful little typical 4 year old boys! They practically live outside during the day playing in our shaded yard, Marshall loves his sand box and Keegan loves to ride his bike as fast as he can, he says he can ride it so fast he can fly. You should see the amount of gray hairs he's given me the past year with his dare devil bike riding, and we can now add skate boarding to his stunts. He got a skateboard for Christmas from Grandma and he is one craaaaazy little boy on that thing.
He enjoys swinging and the three of them often fight over which swing they want (even though there are 3 swings, they still all want the same one).
Never a dull moment around here, that's a normal though!
Health wise the boys are doing good, though I am still watching Marshall closely, I have a suspicion that this heat may have caused his seizures to return so we try to keep him cooled down and as "stress free" as possible. I recently found out that his neurologist is no longer at the children's hospital we go to so if we feel his seizures are infact coming back we will have to find a new neurologist at the children's hospital which I am not looking forward to. I always hate having to find new doctors.
The kids have went through several pediatricians already! They keep leaving our area! Our favorite pediatrician, the one that we had since Keegan's diagnosis left last summer, the new pediatrician we had after that left just a couple months ago. SO now we have ANOTHER "new" pediatrician. It's getting old.
But that's about it in our home. ;) Just vacation planning!