Super Keegan Chronicles #1 8/25/09 -- From the Beginning

I'm glad I found this site, because at the Children's hospital we are the only Neuroblastoma patients, and it's hard. Yes there are a lot of other Cancer patients there, many are leukemia patients, and those moms have been wonderful to talk to! And they do understand what I'm going through, but at the same time? I want/need to talk to someone who has had a child with Neuroblastoma.

It hasn't been an easy path lately, life rarely ever is an easy path actually.

My husband and I have been together since Nov. of 2001, since we were Juniors in high school. In 2003 we graduated and moved away from home so I could go to college. On Oct. 22nd, 2006 we had a beautiful wedding.

Three months later, I was pregnant with our first child. She gave me a rough pregnancy filled with horrible all day sickness that lasted all pregnancy. I was miserable. But she was born 41.5 weeks healthy and happy! 8lbs 2.8oz 20in long. I was in love with that beautiful little red head that looked just like her mommy, but at the same time looked just like her daddy LOL. I knew I wanted more children!

When my periods came back after she was born they didn't come back quite right. I missed every other month. My OB said I was having trouble ovulating and probably wouldn't be able to get pregnant again without help.

HA were they ever wrong!

5 days after my daughters first birthday I found out I was pregnant again. (Sept. 24) On Sept. 23rd I had found out my work place had been shut down, and I was now without a job.

A month later on my birthday Oct. 15th, I got the shock of a life time, and the birthday present that I will NEVER forget.

The ultra sound tech barely touched me and said "oh it's gonna be twice the party" I didn't understand what he meant and asked for a repeat. He repeated it and I was still like...huh? He said you know...two...as in TWINS. I was in disbelief. I couldn't imagine having twins! I honestly had not expected that, it had never crossed my mind.

I cried my eyes out for 15min. Yes we had wanted another child, that was not the problem. And they were planned children, not a suprise (well kinda since the Dr. had said I wasn't ovulating and wouldn't be able to get pregnant with chlomid). But we had kept on trying! And I got pregnant...and with twins! A wonderful gift from God!

Near Christmas we found out we were expecting two boys, which completely made my day! I had a beautiful little girl, and now two beautiful little boys on the way.

I was still jobless as my Dr. just recommended I not work through this pregnancy since it was considered high risk. So it was wonderful to be home with my daughter! We bonded quite nicely and I had so much fun watching her grow! And Kami loved feeling her brothers move in my belly. She tried to share crackers and apple juice through my belly button and would kiss and pat my belly and say "my baby" all the time. No matter where we were she'd lift up my shirt and proudly display my belly and say "baby" and smother my tummy in kisses. Her love for her brothers was strong even before they were born!

Atleast my morning sickness was not bad with this pregnancy!

I had a wonderful pregnancy, though things were stressful for my family. My husband lost his job, we ended up living with friends which was horrible, and I was so so so stressed out.

The boys were due May 8th, but I had already had one C Section because Kami was 41.5 weeks and inducing didn't work and she needed to come out. So I scheduled another C Sect. Though my Dr. would have let me go for a VBAC but since it was twins, I thought it would be better to have a C Sect. (though I still badly want a natural birth!).

Baby A, Marshall Dean was born first at 8:11am 5lbs 15oz 18.5in long. He was beautiful!! He looked just like his big sister!!

Baby B, Keegan Ray was born next at 8:13am 5lbs 11oz and was 19in long. He too was beautiful!! LOL But we weren't sure who he looked like! First thing I noticed was his ear was curled funny and it scared me to death.

He gave the Dr. a bit of trouble with his breathing which scared me, but they got him taken care of and put in the regular nursery with his brother.

I was so happy to get out of recovery and hold my babies and introduce them to big sissy! LOL too bad my body didn't agree and I vomitted as soon as I got in my room. So it took a few stressful painful minutes to change sheets on my bed, and get everything calmed down before I could hold my babies and introduce them to Kami.

She loved her brothers!! And was sooo happy to see mommy! My entire family was there and were so happy and thrilled to have twin boys in the family!

While I was in the hospital my Father in law had found us a house to rent and taken care of all that as a gift to us. And my husband had a new job.

We came home and things went great. The boys were growing, Kami loved her brothers.

The boys got thrush about a month and a half after coming home, and I noticed Keegan's belly getting bloated. I thought it was gas cause I was nursing as well bottle feeding. So we switched his formula to gentlease thinking it would help. It didn't, his tummy kept getting bigger and he was NOT happy. Marshall was fine.

At their 2 month appointment I asked the Dr. about it. We had also noticed Keegan's belly button sticking WAY out. The dr. wasn't concerned. Said Keegan had a hernia, no biggy. And he had gas and constipation. Keep giving him the formula we were giving him, and try gas drops, and if the belly button got hard bring him back. I was not so sure and asked if he wanted to do tests to make sure and he said no and sent us home.

My husband and I were very uneasy.

His belly was still hard, and very round. It looked like he had swallowed a small watermelon. And you could clearly see the viens on his tummy. We took him to the ER one night when a friend said she'd watch our other two kids.

At the ER the Dr. took one look at him and ordered a CT scan and an X ray and then sent us by ambulance to University of MO children's hospital.

There they did every test under the sun for 5 days.

Xrays, CT scans, Ultra sounds, MRI's, blood work, urine tests, stool tests, a bone marrow test. Everything came back fine, just he had a large liver. No idea as to WHY. Genetic tests were done, and were fine. He had a few levels of things that were slightly high but not enough to point to a problem.

We were sent home and seen as out patient.

Keegan went through a series of MIBG scans.

A urine test came back pointing towards Neuroblastoma (which is what prompted the MIBG scans). Upon closer inspection of the MRI a Dr. found a marble sized mass near Keegan's spinal bone, on his adrenal gland. But the CT scan showed it was dead.

The MIBG showed no other organs besides the liver were affected. So they scheduled a liver biopsy on the July 31st, and did a bone scan a couple days before to make sure the outside of his bones were ok, and they were.

So thankfully, only his liver was affected, but all of his liver has been affected.

The biopsy went well and they get the sample they needed, and took photos of the liver. And they fixed his hernia.

We were sent back home to wait for results.

We went back to see Keegan's Oncologist a week and a half later.

They had diagnosed him with Neuroblastoma Cancer 4s on July 31st but had waited to make sure, and told us when we came in.

I don't think I have ever cried so much in my entire life.

I spent over a month bawling my eyes out and holding onto Keegan for dear life, I wasn't going to let anything take him away from me. Yes twins might have been a suprise, but I wanted both of my sons, and I wasn't going to let Keegan go! I stayed by his side for every test that they would let me be there for. I stayed by his side at the hospital, I hardly slept, and rarely left the room. Thank God for my wonderful husband who stayed by MY side and made sure I ate, and would stay with keegan when he would tell me to go on a little walk or take a shower.

We were blessed to have wonderful friends who came to visit, and a church who prayed for us, several churches who prayed actually. And a wonderful hospital who took wonderful care of our son!

Keegan will be 4 months old in August 27th and he is growing, and wiggly, and happy just like his twin brother! Sissy still loves them to pieces and smothers them with hugs and love all day long.

LOL Right now Keegan and Daddy are crashed out on the couch.

The Dr.'s want Keegan to come in once a month for urine tests to check levels and then every 3 months he will get MRI's, CT scans, and MIBG scans as well to monitor his liver and make sure it doesn't spread.

They have said that 4s cancer usually grows, dies, and goes away on it's own, so that is what we are praying it does for our little Keegan.

They said that if he was going to get cancer, he got the right kind at the right age because Neuroblastoma in a toddler or older is not good, and in newborns, it acts completely different. So I guess I am thankful he got it as a newborn, though I wish he didn't have it at all.

I still have days where I want to do nothing but cry my eyes out and cling to him for dear life. But I know I need to stay strong for Keegan, Marsahll, and Kamilah. Those children are a wonderful blessing from God and I am so happy they are in my life!

The kids will be going with me to the hospital every month to show support for their brother and keep him distracted from everything. I think it will help Keegan, and help his siblings understand more of what is going on.

The hospital has been wonderful to us, and we thank them so much for not giving up, and for finding out what was wrong with our little Super Keegan!

We have been having fun being a family, making memories, and not ever for a second taking our children for granted.

It takes a special type of mom I think to be the mom of a child with Cancer! I never knew I had it in me, but I guess God saw otherwise. He never gives us more than we can handle, even if we don't think we can handle it.

Anyway, thank you for reading our story.

Mae, Mommy to Super Keegan, Marshall, and Kamilah and wife to Kenny.