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Keegan/Marshall’s Story

Hi we're Keegan and Marshall we're 5 yr old twins. We have a 6yr old sister, Kami. Our Mom, Mae and Dad, Kenny.  This is our page to share our journey's with all of our family and friends.  I am Keegan and when I was 3 months old I was diagnosed with Neuroblastoma, a type of cancer.  4 cycles of chemo & 2 surgeries later I'm No Evidence of Disease been NED for a YEAR NOW! But still get scans every 3 months to make sure! I am Marshall, shortly after I turned a year old I was diagnosed with a seizure disorder, Partial Complex seizures.  I'm on a med (Keppra) that helps with my seizures, I'm doing really good! Thanks for the prayers!Keegan was born 4/27/09, he was "baby B" his twin brother Marshall was born 2 minutes before him.  They were a wonderful pregnancy, and an easy delivery via C section.  Though Keegan did have some issues breathing at first but they were handled right away and he was fine.

When Keegan was around a month old we noticed his tummy enlarging.  We thought it was gas and changed his formula, it didn't help.  At 2 months his tummy was huge and he had a hernia.  His pedi wasn't concerned, I was terrified.
  • On 7/11/09 I took Keegan to the ER they did an xray and CT scan and sent us straight to the Univ. of MO Children's since they saw he had an enlarged liver.  We were there for nearly a week.
  • On 7/31/09 Keegan had a liver biopsy and was diagnosed with Neuroblastoma 4s (he was just 3 months at the time). The cancer had started on his Adrenal Gland which was hard to see at the time due to his liver being so enlarged.
  • Monthly urine tests showed things were fine, but on 10/22/09 we learned his primary tumor was growing and he needed immediate surgery. So on 10/30/09 he underwent a major surgery to remove as much of the large tumor as they could.
  • 11/9/09 Keegan started Cycle 1 of chemo (3 days)
  • 11/30/09 Keegan started Cycle 2 of chemo (24 hour)
  • 12/13/09 Keegan was in the hospital with a fever spike, scans showed chemo was doing it's job.
  • 12/21/09 He started Cycle 3 of chemo (3 days)
  • 12/25/09 back in the hospital with a fever spike and pneumonia was home 2 days before New Years.
  • 1/11/10 Started Cycle 4 of chemo (3 days)
  • 2/2&4/10 Scans showed things looking good
  • March and April Urine tests looked great
  • 4/27/10 turned a year old
  • 5/4&6/10 Scans looked great and urine looked great, we got the news that Keegan could get his port out.
  • 6/21/10 Keegan got his port out.
  • 7/10 Keegan's Urine test looked great!
  • 8/24-26/10 had a CT scan which showed slight enlargement of spleen & liver, and 4 lymph nodes near his intestines.  MIBG scan that there were NO active cancer cells in these areas, all was NEGATIVE.
  • 8/26/10 NO EVIDENCE OF DISEASE!! Yay! But he still  goes every month for urine tests, and every 3 months for scans.
  • 6/2011 2nd year Relay 4 Life
  • 7/31/11 2 years since diagnosis
  • 8/5/2011 ONE year NO EVIDENCE OF DISEASE!!
  • 11/2011 Still NED!
  • 2/2012 are next scans!
  • 7/31/2012 3 year cancer diagnosis anniversary!
  • 8/2012 2 years NED!
  • Feb. 2015 will be 5 YEAR SCANS!!! Praying for NED!!!!
Marshalls last Neurology appointment (nov. 2011 was great to)! Marshall is 5 years old and ready to start kindergarten and STILL REMAINS SEIZURE FREE!!!  
  • When Marshall was around 10 months old we noticed he was having what seemed to be night terrors.  It was scary, nerve wracking we figured it was just a phase.  Around then we noticed (though we think he had been doing it longer) that he was starting to "zone out".  His eyes would roll up in his head, he'd blink rapidly, and he'd freeze.  He'd stop doing what ever it was he was doing. He didn't react when you said his name or touched him. They were over almost as soon as they started.  It was hard to tell if he was just being silly at first if there was an actual problem.  Upon talking to his pediatrician we got him in to see a Neurologist. After some testing he was diagnosed with Partial Complex seizures.  He was started on Keppra to help with the seizures that happend quite often throughout the day, everyday.  Marshall has under gone CT's, MRI's, and an EEG.  Scared the little guy to pieces.  Marshall is very shy, and has a lot of stranger anxiety and doesn't do well in large groups.  But he is the cuddliest sweetest boy!  He was "baby A" when the twins were born. 
    Marshall has been diagnosed with his siezures for a year now. He still has a break through seizure when he is sick, but none when he is feeling well.
I have 3 amazing wonderful strong children! They have been through a lot the past 2 years and never cease to amaze me! The boys LOVE Airplanes, trains, cars and trucks, out space, DINOSAURS, books, bugs, and playing outside! Typical little boys! My daughter loves Princess stuff, bugs, being outside, dolls, and riding her bike! Nothing slows these kids down.  I am truly blessed.Thank you everyone for your prayers and kind thoughts these past 2 years!

THE BOYS ARE LOOKING FORWARD TO STARTING KINDERGARTEN FALL 2015! Healthy and happy and smart as can be.  They are energetic, fun loving, little boys whom I couldn't be prouder of!

Latest Journal Update

Kindergarten Shots (how fun...NOT)

The boys had an appointment with their pediatrician today, you know...to get those pesky kindergarten shots out of the way (finally).  Poor kids.  Keegan had a complete melt down about the shots.  He hid in the corner of the room, under a chair...screaming his head off.  :(  FINALLY we got him out from under the chair, he was kicking and screaming....he got his shots, and I think I'm deaf now.  However now he's perfectly fine, and running around playing.  Marshall...not so much.  He's the one who isn't feeling too well after the shots.  Poor dude. He had to go first too :(  Gave them both some Tylenol before bed and hopefully they feel well enough to go to school tomorrow. 

The past couple of months Keegan has developed this odd blinking thing he does without even realizing.  It isn't a seizure, it's not what Marshall used to do during one of his seizure spells.  However, it is noticeable and has me a bit worried.  The doctor even noticed it, and was asking how long he had been doing that and if he wore glasses or anything.  He does have an eye appointment the end of September.  So hopefully we will get some answers.  When they did the little pediatrician eye exam on (can you tell me what that shape is....)  he didn't seem to do too well, but it's hard to tell if he was really trying and just messing around, or if he was genuinely having issues.  (Kams got glasses over the summer because her eyes do not cooperate with each other and work together). 

So the pediatrician said to see what the eye doctor has to say next month, and if he doesn't see an issue with Keegan's eyes, then Keegan will be sent to see a NEUROLOGIST, because as his pedi explained...this is the age where 'tics' can come out in a child. 

Great.  My child has had such an apparent stressful life he is *possibly* developing a nervous tic.  If ANYONE should be developing a nervous tic around here...it should be me.  AH! I really don't think my nerves can handle much more of this.  :( 

So I am hoping that everything is ok, and it's just a "Keegan" thing.  However, we apparently do have a history of Tourette's in the family (I was unaware of that), and he has a family member that does have nervous tics.  So it IS something to be considered, though it's probably so far down the family line, that those shouldn't affect him.  Then of course there is that big dreaded CANCER, always nagging at you going "Is it doing something to his body that we don't know about???? It's been a year (almost) since his last scan...what if....what if.....I can't see into his body....I don't know what's going on in there...."  It's incredibly frustrating.  The last time Keegan developed an odd "tic" (when he was 5-6 months old, his right leg started kicking, at first we thought he was just feeling a little better and mobilitiy was becoming easier for him and he finally felt comfortable enough to kick his legs around more and was discovering OH LOOK my legs move! Because before that he didn't move his legs much at all).  Anyway....we noticed it was ALWAYS the same leg "kicking" and he didn't seem to have any control over it really.  We found out at that scan that the tumor was growing up his back bone and was starting to press against his spinal sac.  So could the 'kick' have been related...quite possibly. So of course now that he has an odd blinking thing going on...it is a bit scary, because again...it's kind of something he just does without any control over.  Which is always scary. Especially when scans are only ONCE a year now, and the next one isn't until Feb. 2015! I need scan vision. Forget X-ray vision, I need MIBG and CT scan vision!

This past Friday Keegan had to stay home because he had a fever :(  Over the weekend it came really close to the 103 mark.  During his treatment, I remember that if it hit 101.5 he had to be rushed to the hospital and admitted.  Though he is no longer in treatment or anything I still have that automatic heart clenching fear when his fever hits that 101 mark.  So I'm sure you can imagine how worried I was when it got near 103, even though he no longer has to be rushed to the hospital.  (Before he had to be admitted because he had a port, and there was always a risk for infection to be causing the fevers, so he would have to be admitted and tested for infections because of his port, thankfully he was only admitted 2x because of fever spikes, and both times there was no infection it was just his immune system kicking back in after being knocked down by chemo treatments).  That worry still doesn't leave you though. Not to mention that a random fever spike was one of our "signs" of his cancer in the very beginning to begin with.  (however, to be fair his brother and sister had very low grade fevers this weekend, and it is allergy season, so the fever Keegan had was most likely due to that, allergies...are not his friend and they have really kicked in this weekend!!)

Not to mention the CONTINUOUS struggle with the nose bleeds, it's sooooo frustrating.  In two days he had a total of 4 nose bleeds.  You look at the kid cross eyed (or give him a gentle kiss on the nose...true story), and he bleeds.  The doctor things it is more about dry air and allergies rather than anything else, so we'll try the saline sprays and see if that helps his nose, and some Vaseline in his nose we were told to  try as well.  See if we can't get that nose to stop having it's random nose bleeding sessions.  Not a fun thing when you have to ride a bus to school, or have to be careful in PE and at recess!! Or...are just randomly sitting in art class trying to draw a picture :(  Poor boy.  Yep, that happened to him the other day.  He's dealt with bloody noses since he was like 7 months old.  Though as he's gotten older (and rougher) they have been more often, and bled a bit worse.

Can Keegan PLEASE just be a normal kid.  Enjoy Kindergarten, join the Cub Scouts, play with his friends, wrestle with his brother and sister, ride bikes, go swimming, etc etc.  Without always having to wonder/worry about every little freaking thing he does that MIGHT be weird or odd or medically worrying.  Part of me is just like, ignore it.  It's no big deal.  The other part of me says keep an eye on it, chances are it's nothing, but it doesn't help to be cautious and watchful, it could be nothing, it could be something.  Just watch it, and let the doctors be aware of it, and just go from there.

So I'm just trying to not sweat it....

Also had the doctor talk about the worty things on Keegans hands (he has 3 spots).  I always forget to mention them at his appointments.  They've been there for a couple years now, ever since the kids had the stupid hand foot and mouth virus that went around REALLY bad a couple years ago (man, that was a LOOOOOONG and UNFUN SUMMER!)  Apparently, it's rare, but the hand foot and mouth virus, can also turn into worts, and my Keegan is a medical over achiever and got to be one of those rare kids who developed a few worts from it.  Fabulous, no? The doctor said we can file them down, or try an over the counter stuff, or they could freeze them off but kids don't like that one because it kind of hurts.  They don't seem to bother Keegan, he doesn't mess with them.  She said that in a couple of years his body will probably recognize them and "attack" them and remove them on it's own, (isn't the human body amazing?).   She said since he doesn't chew on them or anything (which would be a risk of spreading them to his mouth/face) she isn't too worried, he doesn't bother them or acknowledge them so she said we can leave them be or do one of the mentioned things.

Btw, Marshall is as fit as a fiddle.  Both boys are growing nicely.  Both are in the 75% in height, and Keegan is barely above 50% for his weight, and Marshall is above 50% but not by much, they are nice and healthy.  They were impressed with the boys pretty white smiles (and the fact Marshall lost his first tooth on Friday, oh yes he did! Keegan is still patiently waiting for a loose tooth though).  Kams lost her 6th tooth over the weekend!)

I do know  I am not looking forward to the boys getting their flu shot.  Oh man.  That is not going to be fun. At least it is just ONE shot, and not 3 shots like each boy got to day!!

It has been a LONG and exhausting afternoon.  The doctors office was running VERY behind. The appointment was supposed to be at 2, we did NOT get in there at 2, but at nearly 3pm.  By the time they were done weighing, measuring, examining and FINALLY getting them their shots...it was 4pm.  We pulled out of the parking lot by like 4:10 and made it to the kids bus stop (to get my daughter off the bus), by about 4:20 I think.  The bus usually gets there at 4:30, but nooope.  Not today.  The bus showed up at like 10min till 5!! What the heck! So yeh, I had two really CRABBY angry sons with me, and a babysitting kiddo (who wasn't in such a happy mood himself, and I don't blame him he just spent 2 hours at the doctors office, that makes anyone cross!!!)

The kids are out like a light, and I'm headed there myself.  Tired. Slightly stressed, but trying not to freak out as more than likely the eye appointment next month will answer a lot of our questions.  I can handle glasses.  Glasses are doable.  That's a minor thing.  I'm ok with minor. 

Never a dull moment around here.  Ever.

Prayers for Keegan appreciated!