Keegan/Marshall Dixson's Journal
A Year To Go
Written Feb 21, 2014 1:50pmWe made it home from scans. We will have results of the MIBG scan later. But I will recap the info I do have here
His CT scan from Wed. looked great, as did his urine tests.
No results on MIBG yet, will get a call today or Monday about them.
If the MIBG looks good (and they expect it will) then Keegan will not go back in for scans for a YEAR (so Feb. 2015 will be his next scans). Those will also be his LAST scans (if everything looks good). That means he will have reached his 5 years OFF TREATMENT mark. After that, no more scans but he WILL go in yearly for urine testing (yay no more pokes)!
They are happy to see how well Keegan is doing, told me some things to watch for JUST in case his cancer comes back.
Otherwise, he's a healthy happy awesome growing boy.
I *did* almost have a big cry fest at clinic today though, it was SUPER hard seeing the 3 babies that were at clinic. Seeing the faces of the parents, hearing those children cry as they went through what Keegan had went through at those ages, and it all just kind of hit me SUPER hard today, there were tears but I hid them fairly well (buried my nose in a book). Keegan's journey is almost at that 5 year mark, and those babies at clinic, their journey's are just beginning, and my heart just was all over the place for those parents and whatever they may face during their journey.
Keegan took one of his preschool pictures in to give to the nurses for the big board they have in the clinic with all the kids pics on it, he didn't want the nurses to forget him since he won't be there for a year (they assured him, that they will NEVER forget him). I can only imagine how emotional I will be next year when he goes in for scans, his last scans. It's scary having the scans taken away, but a relief all at the same time. It's such a scary crazy mix of emotions. He's been going through this since he was 2 months old and all of this testing and stuff started, and then his cancer diagnosis at 3 months old, and the chemo, and surgeries and the couple of scan scares we had a couple years ago. The time spent away from Kams and Marshall while we were with Keegan, the strain cancer put on my marriage and my own health, the stress, anxiety, emotional toll, the affect it has had on all 3 kids....it's been a journey, that's for sure. A journey we couldn't have gotten through without God leading us. He was there for us when we didn't feel like we had anyone else. We will always be forever blessed and thankful for everything. All of our friends/family that stood by Keegan. The people we've "met" (even if it is just on FB) that are like family now because they KNOW what it's like to have a child with cancer.
Here I go getting all teary eyed again, oh what a day it has been....It's hard being at clinic and seeing those families, knowing how they feel because you've BEEN there. You've watched your own son grow up in that clinic, and you know all too well the looks on those parents faces. The tired, scared, hopeful, strong faces. How they sit there and watch their child while talking casually with the nurses and the parents blink back the tears that are right there at the edges of their eyes. Moms and Dads, we all feel it.You look across the room, first at the child sitting there, whether they have in an IV, are receiving chemo, are wearing their EMLA cream to numb the IV area, are bald, full head of hear, crying, happy...you look at them, and you smile. You wave, you say "Hi". You look at the parent or grand parent, or even aunt or uncle sitting with the child, and you shoot them a little smile, a friendly eye that says "I get it, I understand" You send them all the understanding good vibes through the air that you can, and say a silent little prayer for them that it WILL be ok. You WANT it to be ok. You don't know if you'll ever see that child in clinic again (due to your own scheduling or whatever). But in that moment, you are connected, at least briefly. You know you are both their for the same reason. Your child has cancer, or a blood disorder.
Sometimes you sit there, and wonder to yourself, I wonder which cancer (or blood disorder) that child is fighting. Are they fighting the same cancer my child has fought?
Sometimes, conversations are started. I remember some of the first conversations I had with moms and dads and grandparents at clinic. They were the ones inspiring ME, giving ME hope.
Now? When I talk to other parents, they are generally just starting their journey, and Keegan is the one giving them hope that things WILL be ok, that you can get through this. You can hold on, because you have to. What other choice do you have? You have to grab on to whatever hope you have, and cling to it. That gets you through the hard times, even if just barely.
I remember right after Keegan was diagnosed, we had NO CLUE about Childhood Cancer, other than a few names of a few cancers. I didn't know BABIES could get cancer, I didn't know babies could be BORN with cancer. I got a big education in Childhood Cancer in a very short matter of time. It was a LOT to absorb. It took me a good month to say Neuroblastoma without hesitation to make sure I was saying it right, and to be able to spell it right, and to be able to spew out the information about it, and where it was located on my son and what the protocol was going to be (for him). Once I 'got it' the information is there and will always be there on the tip of my tongue, even years from now.In the beginning we only knew what the doctors were telling us, and we were scared. We didn't say it out loud, but we knew...cancer could kill. It scared my husband and I to the core. Would it take our son? Then we would be upset with ourselves for even THINKING those thoughts. OF COURSE IT WOULDN'T! NO he was going to KICK CANCERS ASS. Then at the same time you are like...you want to be confident, not cocky, and you know realistically it COULD happen. So you have an internal war with yourself. Battling two different sides of reality. He could beat this. He might not. So you plan the celebrations for each VICTORY, but you silently plan the rest, because you don't want/can't talk about it out loud. You know if something WERE to happen, you need those plans made, just in case. That way you aren't an emotional wreck trying to 'prepare' last minute. They are awful thoughts you don't want to think of. You then see through your new found community of those who are in this childhood cancer journey too, how REAL those possibilities are as you watch parents have to say good bye to their children, and it saddens you very deeply.Sometimes the bad news for other families can gang up on you, and feel like a ton of bricks on your emotional wall. You can't bare to see anymore pain being inflicted on these children, these families. You don't think you have any tears left in you, and you pray and pray and pray that it isn't your family, but you pray and wish that it wasn't these other families either. You don't want it to be ANY family. So you pray, for a cure, better treatments, more early detection for childhood cancers. For more knowledge, more GOOD news.
Sometimes around my own sons scan times, I've had to step away for a bit, because it always seems that kids fighting Neuroblastoma have relapsed, or earned their wings, or have taken a turn for the worst. It can be devastating when you are trying to be hopeful that your child's scans and next clinic visit will be positive. Then you feel guilty for stepping away for a bit and NOT reading. It's not that you don't care, it's that you care so much it physically affects you and it's hard to focus on what is going on with your own child and his scans, and if YOU are freaking out...they will freak out. You don't want your child freaking out. That just increases the emotional state of the whole thing.At least that has been my families over all experience the past several years now. I'm sure it is different for everyone though.Knowing that Keegan has only one set of scans left...is scary, and wonderful all at the same time.
I want to shout it from the roof tops, but then I don't want to think about it at all. Will there always be this awful internal war within myself when it comes to my son's fight with cancer? The wanting to feel JOYFUL and HAPPY but at the same time feeling guilty and sad? The not wanting to sound overly excited and hopeful, when you never know what could happen in the next moment, but yet you are LIVING in each moment, not taking it for granted because you DON'T know what could happen. I don't think the roller coaster of emotions ever go away.So now we do the "waiting game" again, just waiting for a call with results on the MIBG scan. I still hate waiting.Mae
Scan Time Is Here Again
Written Feb 18, 2014 9:10am
Another 6 months has passed, which means scan time is here once again. Sorry for the lack of posting, their really hasn't been much to post about, which is a good thing!
The boys are enjoying preschool and they will be turning 5 on April 27th! Can't believe my little guys are turning into such big boys! They will be starting Kindergarten in August.
This morning the boys were snuggled up on the couch together after breakfast. (That's the picture that is posted with this post) They were sharing blankets and watching Power Rangers, their favorite show.
Yesterday Keegan started taking his lugol drops in preparation for his scans this week.
Tomorrow morning he has his CT scan, which is a quick scan that he doesn't mind at all, it's done in like a minute, two tops.
He will have to have an IV put in though, not for sedation he hasn't needed to be sedated for quite some time for scans.
He will always need the MIBG scans to look for active Neuroblastoma cells. In order to do that, he has to have an isotope injection (which he will get tomorrow after the CT scan). That injection then allows for any active Neuroblastoma cells to "light up" in the MIBG scan on Friday (we always pray for NO GLOW!)
So Keegan isn't looking forward to the poke he'll have to have tomorrow. He said it "tickles" his hand, which it probably does feel funny since they use numbing cream before the scan.
Marshall was wanting to go with Keegan to see him do his scans, unfortunately Marshall cannot go, he has school and I don't want him to miss, plus Keegan needs as few distractions as possible during his scans LOL Can't have him wiggling all over the place, and Marshall being there would DEFINTELY cause him to be a wiggle worm. Plus, Marshall would get bored, and he has a cold and I don't want cold germs being spread around! So Marshall will stay home. Though, Marshall was bummed he can't go, he told his brother that he wanted to see Keegan's band aid when he got home, which Keegan said "OK".
This winter we've done a LOT of "staying in". There has been a lot of snow, and a lot of cold. We've learned from past experience that the more time Keegan spends outside in the ice and cold...he spends the entire winter sick and miserable with colds and stuff, so we have really avoided being outside a lot this winter. The only sickies we've had is the FLU. That was awful as we have had it several times this year, but each time it doesn't last long and is less severe each time they have had it. I know the first time I had it back in November, I was miserable and it knocked me out for weeks. Thankfully the kids are much more resilient and bounce back quicker.
We will all be welcoming spring as soon as it gets here...minus the spring allergies. However, flus and allergies are incredibly minor compared to the things we COULD be dealing with, so I am thankful for "just" the flu or "just" allergies. There are too many other things it could "just" be instead!
The boys are now enjoying being able to go to the Lowe's Build and Grow programs at our local Lowe's store, they love to build and I love their enthusiasm!
Their big sister is enjoying kindergarten, and is also a Girl Scout now, she is a Daisy and is absolutely loving it. She has her first school program coming up the first part of March, which she is super excited for.
Next month, my family will be adding a new member! My baby sister will be having a little boy, so I will be an Auntie again!
That's about all that has been going on with us. The boys are getting really tall, and yes I know they are in dire need of a hair cut LOL.
I've just been dealing with the regular "scanxiety" that always attacks the month of scan time. The fear of the unknown, what will the scans find? Is he still NED? It doesn't help that it seems every time Keegan has scans, several children relapse or die from the same cancer Keegan has fought. It can be INCREDIBLY nerve wracking. So I cling to the posts of GOOD SCAN NEWS that I see. Those good news scans give me hope and help lesson the scanziety a little.
Keegan is excited to earn more Beads of Courage :) He loves those beads! Occasionally he'll win a free bead from the Beads of Courage FB page (however he is still waiting for one that should have arrived in January so he's a little bummed out about that).
Time to get my squirmy boys into the tub so they can get ready for another day of preschool :) They've had a lot of snow days lately, so at this rate they won't be out of school until June!
Again, I apologize for no updates over the past several months, but no news, is good news!
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 ;)