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Medulloblastoma

Rbegum
Posts: 3
Joined: Apr 2012

Hi,
I am a new member,my boy 9 mth recently diagnosed with medulloblastoma 3/27/12,surgery done on 3/29/12.still on vent..slow recovery,waiting everyday for news,just so painful.

The worst part, I am a physician, know too much abt this, clueless, wat am I doing?
My baby achieved milestones, even was walking with support, slowly slowed down noticed abt 10 days ago , thought was cause of ear infection and teething.but to my surprise he got the worst scenario possible.... Big tumor..he never got sick in 9 mths.
Now I think OMG.... Why me?

I don't know what next ? How ??he is fighting to survive , feels a burden to see him in tubes & lines.

Any feedback and suggestions are welcome....thnx

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

I'm sorry I can't offer you any help, but I wanted to say that I will be sending healing thoughts out to your boy, and big hugs to you both.

Leslie
(wife of Clint, dx'ed Jan 2011 with diffuse intrinsic pontine glioma at age 33)

BenLenBo's picture
BenLenBo
Posts: 144
Joined: Feb 2012

Remember things are never as hopeless as they seem. Your son is stronger than you think, and advances in treatment are amazing. Head to nearest treatments center that specializes in your little one's brain cancer- don't stop until you get the answers you need and are totally comfortable with the medical personnel.

Hold, comfort and be there for your child. Prayers are being sent your way, for strength and recovery.

Carol

Rbegum
Posts: 3
Joined: Apr 2012

Thanx for the reply, gives me strength....

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Dear Rbegum,

I am sick at heart to hear about your little baby. I am broken because my 28 year old son is fighting brain cancer...and then I read a post like yours and I think how even more awful it is when we are talking about a baby.....it's just so wrong on so many levels. I know you must be feeling unbearable heartache...I am so, so very sorry.

I'm just a mom, a stay at home mom now, and I don't have any medical background, but in my researching/googling/correspondence with other caregivers...I've read that some childhood cancers like medulloblastomas are treatable and sometimes have better prognostic factors than adult brain tumors. I have a casual friend on FB whose baby was diagnosed with a brain tumor and she went through some really tough times but came through it and is living a totally normal life now. She still has regular MRIs and will continue with those for a long time. She's four now. I'm going to send her a message and ask her what kind of tumor her little baby had. I think she was one when she was diagnosed.

I'm sure that since you are a physician, you already probably know more than I do...but I just wanted to tell you that I know from raising four kids, that they have amazing recuperative powers. My daughter had viral pneumonia when she was 10 days old and we almost lost her. But when she started recovering, she got better so fast! The change from one day to the next was almost unbelievable. (She's 26 now.) So I hope and pray that your baby will amaze you with his/her recuperative powers.

Please do everything that you can to hold on to hope. In my experience, we've had really bad days when I was totally full of despair and terrified of the future, and then the very next day, my son would have improved so much that I couldn't believe it. This happened to us many times. You just do not know what the future holds.

I will be thinking of you (a lot) and praying for you and your baby...a lot. Please keep posting on this site and let us know how your baby is doing.

Love, blessings, peace and strength to you,
Cindy in Salem, OR

Rbegum
Posts: 3
Joined: Apr 2012

My baby is on vent still... Started on tube feeding, hope he tolerates
Having random eye movements, even a little blink giving us hope.Though the tumor was big, he did great.

I remember he use to crawl behind us to follow everywhere we go, at home,everyday was so fun to watch him.

Early morning he would wake up and play by himself.
Loves to sit in closet, doesnt play with his toys,never wanted to be alone.He has one teeth.
Used to close laptops, play with books, even broke our flat tv after pulling down.

He is a cutie,and even now fighting like a warrior.....

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