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.
  • 2/2011 ONE YEAR OFF TREATMENT!!!
  • 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

5 Years NO EVIDENCE OF DISEASE BABY!!!

Well, way back in July of 2009 when I heard the dreaded words "your son has cancer".  He was just 4 days past turning three months old.  Just a baby.  I didn't know babies could get cancer, I didn't KNOW babies could have chemo.  I learned a LOT of things over the last five years that I "didn't know"!!

So this week was his 5 year scans.  An absolutely TERRIFYING moment of our lives.  JOYOUS, and terrifying all at the same time.  I have felt so conflicted.  Crying happy tears, and scared tears, and every thing in between. 

I don't have xray vision I can't see what is going on in my sons body.  Scans once a year is scary enough.  A lot can happen in a year.  NO scans at all?  Is even MORE scary! We are going to be relying on physical exams and urine labs from here on out to determine what's going on inside his body.  Holy.  Crap.  That's scary. 

However, my son is NOT sad to miss out on the IV he has to get every time he has a scan so he can get a radioactive isotope injection concoction to prepare him for his MIBG scan that he has 2 days later.  Nor will he miss having iodine drops for a week to protect his thyroid from the radioactive stuff that gets pumped into him.  He will NOT miss laying PERFECTLY STILL inside those big scary machines.  I know ADULTS that have to be sedated to go into those machines for even just a few minutes.  He's been doing unsedated scans since he was 4 years old, and one of his scans takes 45min or more to do! You cannot move.  Do you know how hard it is to be a child that young and lay THAT still for 45min?  How he does it...I have no idea.

Wednesday was the CT scan so we went to the children's hospital and he got the IV placed, and had his exam done and played in the play room to wait till it was his turn.  The CT went well, it goes quick and he doesn't mind it.  This time they asked him to hold his breathe in the machine and he did it very well, was very proud of him! He's never had to do that before. 

We went back up to the play room because we had to wait on the isotope injection to arrive (it got held up in St. Louis due to the weather).  It finally arrived and he got that done and we went home. 

Today we went back down for the MIBG scan.  That big ol' long pain in the butt scan that means so much to us though!

Results from both scans....normal.  So that's a good thing! So now he's officially 5 years NED and now he still goes once a year, but only for a physical exam and to pee in a cup for a urine lab (which is how his cancer is monitored).  So no more pokes, such a relief. 

He's happy to be a normal little guy.  He'll be playing soccer this year with his brother and sister, he's so excited and has almost all of his soccer gear. 

He is loving Kindergarten and has a fantastic teacher.  Tuesday when he got home from school he had a card in his back pack that the teacher had made and all of the kids signed it in his class.  It said "GOOD LUCK KEEGAN" on the outside and "We'll be thinking of you" on the inside.  Keegan said "I love my teacher and my friends they are the best!"  I have to agree, they really are the best!

We got home JUST in time on Wed. to make it to their school so we could see Marshall got his award at the awards assembly so proud of Marshall! Keegan cheered loud for his brother.  Unfortunately we missed my daughter assembly as it was earlier in the day but a friend snapped a photo of her getting her award which I greatly appreciated!

So proud of ALL THREE of my amazing and hard working children.  They are my world.  There is a saying that your children are your heart walking outside of your body, oh yes, that's very very true!

Recently someone royally irked me off by accusing my husband and I of playing "favorites" with our children when we said we were having a 5 year NED party for our son on Saturday.  That it 'wasn't fair' to play favorites and they should all get equal things. 

Well, generally I agree.  As a parent, I work my butt off to KEEP things equal between my kids.  Face it though, that is NOT always going to happen.  One kid may need you more than another at a particular time.  One child may choose an activity that costs more than the activity another child chooses.  You cannot possibly keep EVERYTHING equal all the time. 

At the time I was FURIOUS.  Then I remembered this was coming from someone who doesn't even HAVE children. 

Only my husband and I know what we do for our kids, and what we've been through as a family.  No one knows EVERY intimate detail of our families life but us.  We give our children everything we can. 

My daughter is enjoying her 2nd year of Girl Scouts, my sons are looking forward to joining Boy Scouts soon, now that they are old enough.  They are all three going to play soccer this summer.  Last year they played T Ball and I was their team coach (I am NOT coaching anything this year, ha!), We look forward to our family trips to the lake, and to the zoo this summer.  My daughter recently went to a Father/Daughter dance the town put on in January.  In March we go to a Mother/Daughter Tea Party the town puts on.  In the fall they have the Mother/Son stuff.  This summer they have the fishing derby and we can't wait to take the kids to that (after they get fishing rods for Easter anyway!) 

We have family game night on Friday and play all kinds of board games, and Kinect games. And try to do something fun together on Saturday's.  We also volunteer together for a local dog rescue. 

Trust me.  Things are as equal as they can be around here.

We also know that when something MAJOR happens in the lives our children, it deserves to be celebrated.  5 years no evidence of disease is a VERY big deal.  (the comment made came from someone who is not only NOT a parent, but who is ALSO a cancer survivor themselves).  So I was doubly floored by their comment.  You'd think they would understand how big of a deal 5 years is.  Apparently, some do not. 

So yep.  We decided to (as a family) throw a party for Keegan.  Marshall and Kamilah have been a HUGE part of the planning.  They helped pick out a gift to their brother.  They helped plan the cake and the decorations.  They are helping keep it a semi secret from Keegan too.  They get it.  They know.  They understand how big of a deal this is.  They also know that their mom and dad things they are ALL amazing kids who deserve to be celebrated and they know this party is as much for them as it is for Keegan.  However, they also know and have said themselves that THEY weren't the ones that got poked, stabbed, operated on, and given chemo, it was their brother that had that not them.  They have always just understood that cancer is life and death.  They know they are lucky to still have their little brother here 5 years later. 

It's a big deal.

We will celebrate it. 

We celebrate the small (yet big in their own right) things too.  Like 100% on a spelling test, 100% on math sheets, going up a level in reading etc.  Those get celebrated too.  They are not small accomplishments.  They just get celebrated in different ways.

Besides, the boys have their 6th birthday coming up in April ;)  There will be another big bash for BOTH of them -- VERY much equally!

So for five years NED :)  HOOOORAY! Party on!

We still don't know what the future holds for Keegan.  However, one BIG mile stone has been met and for now, we will enjoy that!

Mae