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"There's a tumor, it appears to be very large." She said. UPDATE.

Posted by on May. 29, 2013 at 10:05 PM
  • 10 Replies

 Being new here I feel entitled to share a piece about myself before breaking into the sob story which has been the last few days. :P

My name is Brooke, I'm twenty. I'm married to the love of my life and we have two babies.
Louie is 10 months old and Norah is a month old, adjusted (she was very premature.)
We live and love in Hawaii where we both grew up.
Louie has been a medical miracle since he was conceived. My uterus is tilted making it difficult to conceive. (I got lucky twice!) Louie was born with a heart murmur (and another fixable condition) and after an operation, his valve was fixed. After that, they said it was like he never had it. He was a perfect little baby. We were (and are) very much in love! Louie has brightened our days and made us realize our dream of being parents! He is everything I've ever wanted and more. Norah came along not long after, several weeks premature. We were told Norah was a miracle child and that it was very wild that she'd made it. We were told she'd probably be the last baby I'd be able to handle having. We're content with that.

Louie started acting funny about 6 weeks ago. Very tired, moving his head back and forth like he was dizzy. He would throw up (without diarrhea, meaning he was probably just nauseated.) We got him checked for an inner ear infection (which controls his balance, meaning he could be feeling motion sickness while not moving. My husband is very prone to motion sickness.) We took him to several doctors. They all said the same thing- cut back on his formula, change his feeding schedule, buy a very special kind of formula, try mixing my breast milk with formula, etc. Nothing helped our poor boy! He got a little better a couple weeks ago.

On May 19th, our baby boy woke us up with a shrill scream. It was unlike anything I've ever heard, and nothing I ever wish to hear again. It was 3 am and Miles was already out of the bed by the time my eyes snapped open to the sound. We both ran to the nursery where Louie was flailing his arms and legs, turning his head back and forth rapidly, clinching his fists, eyes darting back and forth, mouth gaping. 

I was stuck in the doorway. Tears were already streaming, I was horrified. Miles was on the phone with 911, holding Louie's arms from scratching himself in the face. Miles is in school to be a physical therapist, he's been working with children who are terminal in the children's hospital. He helps them remain limber and cares for them in case of a medical emergency. He's been trained. My mind was racing a million miles an hour but the only thing I could think was how much I needed my baby in my arms.

The ambulance arrived in record time and took our boy to the ER. Miles rode with him and I needed to collect myself before leaving with Norah to my mom's. I took baby girl at 4 am to my sweet mother's house who graciously took her and gave me a hug and said a prayer with me right there on the front porch, both of us in our pajamas.

When I got to the Emergency Room, Miles was in the room with Louie. They told me they would run tests and scans. Louie was sitting straight up, eyes drooping, but with cheetoh puff cheese around his little lips and all over his drooly cheeks. He looked just like my baby. He looked perfect.

The scans were run and tests were taken and blood was drawn. They allowed Louie to go home with us because he seemed fine. He was eating and smiling and laughing. Our amazing doctor told us she would call me as soon as they knew anything.

We spent a day or two at home, in pure bliss. Everyone was home and fine, Miles and I even got a date in! Louie was a little unenergetic, but otherwise he seemed so good! Norah was so perfect and sweet and being a total doll for us letting us catch up with sleep.

The call came on the second day home.

"Brooke, is your husband with you?" Were the first words out of her mouth.

"Yes ma'am, he's right here. Is everything alright?"

"Well you'll probably want to come in to talk about this, if you can..." Her words were so quiet and so slow.

"What's wrong with Louie?" I needed to know right then.

"There's a tumor, Mrs. Brooke. It appears to be very large."

We were then told to bring our Louie boy to the hospital and they would set us up in a room. We opted out, and said we'd wait for the first operation. They were fine with that and told us that we'd have several appointments in between the operation to plan how things would be done.

Louie has a large tumor taking up the left side of his brain. We are not yet sure if it is malignant or benign. The tumor was removed today. They are performing a biopsy and quite frankly, we're terrified of the outcome. Believe it or not, one of the RNs at the hospital reccomended I try Cafemom to blow off some steam and write out our story, since writing is what helps me best cope.

We're praying and hoping and believing with a fire we've never had before. We're praying for our angel and we're living by faith and taking every day as it comes.

Well, I better hop off, lil toot is starting to stir. (Finally!!)

Thank you all,

Love always, Brooke. 


Oh friends, I wish more than anything I could give you a good report...

Louie is not doing very well at all today. He's thrown up 9 times today so far. He's been crying and unsoothable. He's on the highest amount of pain medication for his weight and height and age. He's feeling so miserable. His poor little head is so swollen and bruised up and he's got staples and stitches every which way. They had it wrapped but said that unwrapping it would best help it heal. He can't move much because he's hooked to so many machines. They're giving him medicine to make him sleep, so hopefully he won't feel so horrible.

The biopsy did not come back the way we would have liked. Please keep us all in your prayers, I will make another post soon explaining the outcome of the biopsy and give an update on Louie's condition.

Thank you again.

by on May. 29, 2013 at 10:05 PM
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Replies (1-10):
by on May. 29, 2013 at 10:13 PM
Wow what a touching story. I hope little Louie is okay and heals soon. I hope his tumor comes back benign. Hang in there. Sending strength your way!
by on May. 29, 2013 at 10:16 PM
wow :( I can't imaginge going through that. I'll keep your little man and your family in my prayers.
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by on May. 29, 2013 at 10:28 PM
ur family is very strong moma. i will be praying for all of u. please keep us posted with up dates. welcome to cafe mom, sorry u found us from these events but glad we can be here for support.
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by on May. 29, 2013 at 10:53 PM


by Platinum Member on May. 29, 2013 at 11:32 PM
I'm so sorry that must be terrifying. I hope it's benign and he recovers quickly!
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by on May. 30, 2013 at 12:24 AM
by on May. 30, 2013 at 2:46 AM

 how old is the other baby not "adjusted" I didnt realize when you had premies you got to change their age based on how old they should be..not how old they actually are.

by on May. 30, 2013 at 6:20 AM
Well I say that so it makes sense how we had them so close together. Norah was born in March but was incubated and in the hospital until she reached her due date, in April.
by on May. 30, 2013 at 7:14 AM

 gotcha, well I just assumed it meant you pretty much got pregnant right after you had the first, which i guess would be surpising, since you said it is hard for you to get pregnant lol

Quoting 4littlewheelers:

Well I say that so it makes sense how we had them so close together. Norah was born in March but was incubated and in the hospital until she reached her due date, in April.


by on May. 30, 2013 at 7:32 AM

I'm so sorry you are going through that!

Writing things down and getting them out really does help though so I am glad you are here.

Science and doctors can do amazing things these days and I wish you and your family nothing but luck and love in your lives.  

Please keep us posted.

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