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!
- 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.
MIBG Complete (results are in)
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 ;)
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We want to thank you for your prayers and support as Keegan kicks Neuroblastoma's butt and while Marshall deals with his Partial Complex Seizure Disorder. Thank you all so much!
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