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.
A Year To Go
Feb 21, 2014 1:50pm
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....
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.
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.
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.
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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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