Any experiences with brain tumors?

kattyleigh · May 2012

Hello mamas. Just wondering if anyone has experience with brain tumors? We are in the early diagnosis stage and just looking to hear others' stories. Not ready to discuss this with anyone IRL. The strange part is that I'm an RN on a pediatric neuro and PIMC floor. Hits too close to home and I'm scared. Thank you.

SJC1984 · May 2012

Our son was diagnosed with a pilocytic astrocytoma on his hypothalamus at age 8 months. I don't know what kind of tumor you guys are dealing with, but the outcome is so different for everyone, so try to keep positive thoughts and not listen to what you read on the internet.

When our son was diagnosed, we thought he wouldn't live to see his first birthday because it was producing such severe side effects (hydrocephalus, nystagmus, adrenal insufficiency, morbid obesity, plus it was growing at the rate of a grade IV tumor and we weren't sure they would ever get it stopped). Then we made the decision to let them debulk the tumor because it had grown so quickly, and when he had the surgery, he had two strokes. We seriously thought life was over for him and for us.

Thankfully, he's come a long way since those dark days and is now about to turn five years old! It's not been without serious setbacks at times -- 96 rounds of chemotherapy, blind in one eye and had a retinal detachment in the other, the stroke left him paralyzed on his right side and getting that movement back has been a lot of work, periods of seizures, developmental delay, etc.

HOWEVER, seeing our son continue to grow and overcome despite all of this horror that we've been through has been the most joyous experience in my life. Every new milestone he hits, how ever late, is an absolute miracle to us and is such a blessing to experience! It's been so very hard at times, but I'm so very glad we chose treatment and I'm so thankful that God has allowed us to continue to watch our son grow and be healed here on earth.

We will likely be doing some sort of treatment every time his tumor grows (have had two treatments during the last four years), but our neuro-oncologist told us that we need to look at it like it's a disease we have to manage (such as diabetes) and that has helped to put it into perspective for us.

I'll be glad to answer any questions you may have (that I can answer, of course)! My thoughts and prayers will be with your family! I hope this is one of those tumors that they can get to, get it out, and there are no lasting effects for your LO!

kattyleigh · May 2012

Thank you for your insight. Wow. What a fighter!

My daughter has not yet been diagnosed, we are still ruling out other causes. She wakes every morning with severe and sudden headaches that flash on and off a few times for the first few hours of the day. They only occur on the left side, last just about 10 seconds each, and have been ongoing for months and months. They are extremely painful and just stop her from doing whatever activity she is doing at the time (playing dolls, reading, watching Elmo, honestly, anything) and she screams out and cries while holding her head on the left side, saying, "It hurts right here mommy!". She has a mild history of her eyes wandering upward which originally her pedi thought was just benign seizure activity. We haven't seen that for awhile that we are aware of. She has no nausea and vomiting and as for clumsiness/changes in gait, it is just so difficult to tell at her age. Of course she is covered in bruises, she's 2.5. She also currently has a black eye on the left side, from a spill she took. She has no history of trauma. We have an opthamology appt on Friday and it can't come soon enough.

Dr. Google doesn't phase me too much because I see children affected with the worst every time I go to work. Still, it is different when it is your own child. I never ask my patients' families the symptoms that lead up to their diagnoses.

Again, thank you for sharing. We are hoping for the best but I can't get the feeling out of my mind that something is wrong with my baby.

SJC1984 · May 2012

I think it's encouraging that she's not having the vomiting episodes that most tumor kids seem to have. I will say though, that the 'upbeating' nystagmus is what lead our pedi ophthalmologist to send us for an MRI. He said it was very unusual to have congenital nystagmus where the eyes deviated upward. I guess normally it's a left- to right-type fashion, and he thought that meant there was something else going on. Of course, our son did present with daily nausea/vomiting episodes, but our pediatrician said it was "reflux" which in my heart I knew it wasn't. I even went to so far as to go along with their upper GI swallow study in hopes that they were right and I was wrong. We just had a lot of things that added up, in my mind, to more than an unhappy baby with reflux. His head measuring large, along with the nystagmus and vomiting should have been more than sufficient evidence for them to send us for an MRI, but since our son was still a baby, they had to rule EVERYTHING out before they would give us one. It's unfortunate, because all the watch and wait could have bought us precious time that the tumor was growing (from approximately three months old until eight months). Thankfully the pedi ophthalmologist listened to us, but if I had it to do over again, when everything first started happening I would have just taken him to the ER and insisted that someone do a CT for us.

Honestly, it could be seizures for your girl, or it could be migraines. But would I bet on it? Absolutely not knowing what I know now. She shouldn't have to suffer, even if it is as simple as a migraine. If your gut instinct says something's wrong, then you should go with that. Even if everything turns out normally, you did what you thought was best for her, and that's okay too!

Dana127 · May 2012

Hi,

One of my twins had a benign astrocytoma removed in December. It was in the cerebellum and about the size of a golf ball.

Her symptoms included decrease in motor coordination and loss of skills. She was seen by our pediatrician and immediately hospitalized and given an MRI. The surgery was over 7 hours and successful. She had some complications later and after a 7 week hospital stay she is home and doing well.

Her complications were totally unexpected and not common. She needs pt but she is expected to make a complete and full recovery.

Best of luck and please feel free to pm me if you have any questions or need someone to talk to.

outnumbered · May 2012

SJC1984:

Thankfully, he's come a long way since those dark days and is now about to turn five years old!

Hi SJC

It is great to read this. I have Emerson's caring bridge site bookmarked and I check in once in a while to see how he is doing. I think about your family and say a prayer for his continued health.

grbnik · May 2012

outnumbered:
SJC1984:

Thankfully, he's come a long way since those dark days and is now about to turn five years old!
Hi SJC
It is great to read this. I have Emerson's caring bridge site bookmarked and I check in once in a while to see how he is doing. I think about your family and say a prayer for his continued health.

Sorry to jump in: Just checked out your Caring Bridges site SJC- and Emerson is a doll! I appreciate you sharing this- it brings awareness out. Thank you.

SJC1984 · June 2012

outnumbered:
SJC1984:

Thankfully, he's come a long way since those dark days and is now about to turn five years old!
Hi SJC
It is great to read this. I have Emerson's caring bridge site bookmarked and I check in once in a while to see how he is doing. I think about your family and say a prayer for his continued health.

Thanks so much! We appreciate the prayers!

SJC1984 · June 2012

grbnik:
outnumbered:
SJC1984:

Thankfully, he's come a long way since those dark days and is now about to turn five years old!
Hi SJC
It is great to read this. I have Emerson's caring bridge site bookmarked and I check in once in a while to see how he is doing. I think about your family and say a prayer for his continued health.

Sorry to jump in: Just checked out your Caring Bridges site SJC- and Emerson is a doll! I appreciate you sharing this- it brings awareness out. Thank you.

Thanks!

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