6 Month Old Son With Neuroblastoma

I have an amazing 6 month old son who was diagnosed with Neuroblastoma cancer at 3 months old. He is a tiny little guy barely 15lbs. But he is a TOUGH and FIESTY little guy! (He has a healthy twin brother who is nearly 20lbs and a healthy 2 year old sister).

Just a couple days ago Keegan underwent his second surgery (the first was a liver biopsy to confirm it was neuroblastoma in his liver). He has Neuroblastoma stage 4, and his doctors were confident it would go away and die on it's own. Well...the marble sized mass that they originally thought was dead...wasn't so dead after all. It grew to plum size.

The mass was growing in between his vertebre and around his back bone and was pressing on nerves that would have eventually basically paralyzed him.

His surgery he just had removed part of the tumor. They were only able to remove the part of it that was growing around his vertebrae. The part that is still in his abdomen they cannot touch as it is around major blood vessels, and chances are he'll be undergoing chemo this month.

I'm very worried about how all of this will affect my tiny sweet heart later on in life. He's already behind on his gross development skills because of this, an the surgery he just had weakened his back muscles to only further put him behind.

I just worry how things will turn out for Keegan as he gets older.

Concerned in MO,
Mae

By cadmom
Posted November 1, 2009 at 7:53 pm
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Hi Mae,

Unfortunately, I do not have any information about late term effects, or even your son's type of cancer. However, our family situation is similar to yours. My two year old son Andrew was diagnosed with leukemia in May. His identical twin brother Daniel and 4 year old sister Carolyn are healthy. Andrew was in the hospital for a month last spring undergoing treatment, and I really saw him shut down. While Dan was using all new words and I saw noticable progress in his physical abilities, Andrew just sort of went in on himself. He really wouldn't talk or play, and he really wasn't himself. I was also concerned, because there weren't any other children his age for him to play with while he was in the hospital. This was tough to see, but I want to let you know that he has gotten back to himself since his treatment hasn't been as intense. Also, he's caught right back up to Dan as far as his verbal and physical skills.

My best advice would be that in addition to the doctors, ask lots of questions to the nurses, child life specialists, social workers, and other support staff at your hospital. They might be able to steer you towards early intervention programs that could help him with his development.

Best of luck,

Jenn

By PoeDunk
Posted November 2, 2009 at 8:24 am
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We've been looking into a program called First Steps that will help him with his physical development where he's lacking or getting behind. We're not 100% sure yet if he'll qualify though. We have to go through several steps before we'll find out, and with being in the hospital? It's put our appointments on hold.

For the most part Keegan seems to be very active and very out going, and doesn't seem to let things get to him. But he is just 6 months, and hasn't had to have any chemo. So we will see how things go.

Mae

By monahan1
Posted November 3, 2009 at 8:34 am
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Hi Mae,
My child had ALL so different treatment too. However, we have known several families whose children had neuroblastoma. My one friend has been extremely active in neuroblastoma community. She went to a neuroblastoma educational convention, hearing talks by and meeting some of the most famous doctors that specialize in it. She has done an incredible amount of research on it. Her son is now in remission! Hurray, hurray. He is also a (fraternal) twin but I should mention he had some issues from birth. I don't know the extent of them but they did include breathing issues earlier. This little guy beat lots of odds and is now in kindergarten. He is funny, happy and ready to rock and roll. Perhaps you could contact her and she can at least point you to some good info. I'd rather not post her email her so if you contact me, I will send you the info. Good luck. It is so important to become an advocate for your child. Chemo is nasty and it does have long term effects. But it can also give us out children back...
Sherry

By tinglytoes
Posted November 5, 2009 at 1:08 am
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Hi Mae,

I'd love to help you by loaning a baby carrier from our lending library at TinglyToes.com. You definitely have your hands full, and babywearing is an incredible tool that could help you tremendously.

Please let me know if we can help!

~Susan

By withfaith
Posted November 5, 2009 at 1:22 pm
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Hi Mae,
My family is in a similar situation as yours. My son is 5 months old and he also was diagnosed at 3 months. He has Ewing's Sarcoma and we will be starting his fifth round of chemo on Monday. He will undergo a total of 42 rounds of chemo every three weeks. He will need surgery and he is scheduled for another MRI on Monday to determine when and to what extent the surgery will be. We know he will have his right kidney removed, but the MRI will determine how many of the other tumors are remaining that will also need to be removed. The tumor on his kidney has encompassed it entirely and he also has many ‘smaller’ tumors in various locations including his spine. The cancer is responding very well to the chemo. All the tumors have shrunk and some of the smallest have died!
I remember being anxious about my sweet little baby boy starting chemo. Chemo was such a scary thought for such a 'fragile' baby. But we have learned how strong he is and how resilient babies are. I worried in the beginning of chemo about his development, especially after a rough first round, but we asked our Dr. for referrals for PT and Childlife is a great resourse!! Of course we also worry about possible late term effects, but currently we are at the stage of getting used to the rollercoaster of chemo with three young children (a brother that is 4 and sister that is 21 months) and taking things a day, a week or minute at a time. I know the Lance Armstrong foundation is a resource regarding late term effects, if/when we may need it.
When we started chemo he was 9 lbs, in pain a lot to the point that I felt holding him was more painful than letting him lay on his own. Now he is 15lbs and smiles like a baby should and I can hold and tickle him! Chemo isn’t easy, but it is killing the cancer and now my baby can smile and laugh.
As you have concerns of what chemo will bring, we are wondering what surgery will involve for our son. We have not been able to find anyone else his age who has had this type of surgery.
We wish your family the very best and I am so sorry that you have to have this experience too, but know you are not alone.
WithFaith,
Jessica

By chemosucks
Posted November 13, 2009 at 12:20 pm
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Chemo is hard but every child responds differently my son has lymphoblastic lymphoma. We have had our ups and downs (6 months 5 days in) but kids are amazing and strong. Give him your love, kill germs, pray a lot, and watch him soar! He will surprise you at every turn. Give him hugs for me. Do you have a caringbridge site? Everyone should have one it helps! www.caringbridge.org/visit/chunn

By brendaprice
Posted November 15, 2009 at 12:08 am
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i have a 9 year girl that has neuroblastoma cancer she had it from the time she was for years old she went into remission in 2004 and had a relaps in oct of 2008 she had a stem cell transplant done this year and it didn't work

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