Question re: Tumor Regrowth on a Child

[Vanessa]

Hello everyone,

I recently started doing research online regarding any support groups regarding spinal cord tumors and I found this website. I'm glad there's somewhere I can go for answers or support. So, thank you for being here! Here's our story...

I hope someone could help us. I need your opinion on my son's case, and I hope you can help shed some light on his situation. In January 2008 our 6 year old son (he's now turned 7) was diagnosed with a spinal cord tumor. It was diagnosed through a spinal MRI because he was having severe pain in the middle of his spine. We were referred to Dr. David Sandberg, Pediatric Neurosurgeon at Miami Children's Hospital, and he's been an excellent doctor and a brilliant surgeon. The surgery to remove the tumor took place at the end of January, and it was successful. The surgeon felt he removed the entire tumor, and a post-op MRI confirmed the tumor had been removed. The tumor was bening, and classified as a ganglioglioma. My son recovered really well, with no neurological effects, and he no longer had back pain.

Dr. Sandberg wanted us to take our son for a follow-up MRI every three months for the next year. When we took our son for this MRI (1 week ago), to our shock and dismay, it showed a 98% probability that the tumor had returned. Now this tumor is not as defined as the other tumor, on the MRI images it looks kind of cloudy, and not as defined, so it just makes us confused. Dr. Sandberg felt that our son needed surgery to remove the regrowth. He also showed the images to 2 other neurosurgeons at the hospital, and one of them agrees with surgery, and the other felt strongly that we should wait 6 weeks to repeat the MRI and see if there's been any changes to the tumor. Together with the surgeon we made the decision to wait the 6 weeks. In the mean time we are monitoring our son closely for any pain or any other signs of weakness, walking, etc.

Our questions are: Are we doing the right thing by waiting? What are the chances of a ganglioglioma regenerating that fast (3 months)? Could the pathology report been wrong? Can a tumor be made up of two different things? Should we get a second opinion? Has anyone out there experienced anything like this?


Thank you for your time and cooperation. We are just very concerned parents wanting to do the very best for our son.

Vanessa

[drummer904]

I'd have to agree with waiting , since he hasn't showed any new symptoms yet, it might be gone on the next mri.

Has anyone else heard of one growing back that fast anyway? Im no doctor but i think u did the right thing, so dont worry...not too much anyway;)
I think you should always get a second opinion also.

Hang in there, Vanessa

[Vanessa]

Thank you for your reply. All we could do is pray and have faith that this thing will disappear. The wait is agonizing, but if we could avoid surgery, it will be worth it. Thanks for your support.

[WyattJennifer]

Hi There,
Sorry to hear about your son, my two year old also had a ganglioglioma, it seems they are not as common. Please read his story on the people page and e -mail me anytime. He is having what seems to be a re-occurance as well
I am learning that the waiting and the unknown is a huge part of the SCT journey. I am still tyring to learn to cope with this difficult part of it.
Keep your chin up!
I would love to compare stories with you!

[Vanessa]

Thank you Jennifer, I just read the story, it just breaks my heart. I know the feelings you're going through. I will definately write to you and we could compare stories.

[Vanessa]

Jennifer, I sent you an email on Tuesday, did you get it?
Vanessa

[REALMCCOYS8VERIZO]

Hi! I wanted to post a reply to you post as well. I know what it's like to be confused and concerned about your child! I have a 6 year old son as well with a benign juvenile pilocytic astrocytoma spinal cord tumor. To save the space here on the forum, here is his caringbridge site which gives more background on his case: www.caringbridge.org/visit/lukemccoy

Just a couple of things I can think of....did your son have a full spine MRI with and without contrast dye?? If not, might it be worth repeating the MRI to get a clearer scan? My son has to have the contrast dye every time he has an MRI..which is every 3 months. At one point he was getting an MRI every 6 weeks because his tumor was showing continued regrowth after his first surgery. The dye is very important in determining "what's tumor and what's spinal cord tissue".

My son went through 3 different chemo regimens with continued tumor regrowth. We were searching like crazy for the best possible care we could get for him. Our research led us to Dr. George Jallo at Johns Hopkins in Baltimore, MD ( you've probably read his name numerous times on this website)..he is probably the best in the world of spinal cord tumors. Send him a copy of your most recent scan and he'll respond very quickly to you. My son's condition has taken a change for the better since Dr. Jallo performed a gross total resection last summer. My little guy has had no new tumor regrowth and will finish up with his current chemo ( Temodar) next month.

I hope this has been of some help to you. I also found tremendous support on this forum when my son was diagnosed 18 months ago at age 4.

[Vanessa]

Thank you so much for your response and information, I really appreciate the support. I read your son's amazing story (although it seems the ending is missing because it doesn't mention his 2nd surgery). May God continue to bless your son and your family.

Every time my son has an MRI they do it with and without contrast. He had an lumbar MRI on April 29th (which was 3 months after his surgery) and then a full spine MRI on May 21st. The surgeon wanted the MRI repeated because the quality of the April 29th one was not that great, it seemed that my son moved during the MRI, (he usually does the MRI's without sedation). The repeat MRI was done at Miami Children's Hospital on May 21st and it was done with sedation and with/without contrast. His next MRI will be on July 3rd, and we're praying for a miracle.

Thank you for the information regarding Dr. Jallo, after seeing his name all over this website I wrote to him a few days ago and he responded. He said we were in great hands with Dr. Sandberg (he graduated from Johns Hopkins) which just reassured us our son has an excellent surgeon. And if we ever need a second opinion we can send him the MRI's and medical history.

If you don't mind my asking, I wanted to know, if your son's tumor was bening, why the chemotherapy? Also, when he has the full spine MRI how long do they usually take? My son's last MRI with sedation took about 4 hours!

Vanessa

[WyattJennifer]

Hi Vanessa,
Wyatt had to get a full spine M.R.I and it took 11.5 hours!
I didn't like having him "under" that long, now he only get's the C-spine which is about 2 hours.
I debated on contacting Dr. Jallo as well. At what point should you seek a second opinion? I feel Wyatt's Dr. is making all the right decisions, but I often wonder if I should get a second view on it all.
Have a great Day!
Jennifer

[Vanessa]

11.5 hours!!!! OMG! I would of had a cow!!! I can't imagine! I guess I shouldn't complain now! Why that long?? That's unbelievable! I was having a fit that it took 4 hours because when he had a full spine MRI at our local hospital - and he was awake - (not sedated) and it took about 3 hours. So I figured, OK, if he's going to be sedated, that should take less time because he's not moving or anything. But they told me that at one point, I guess since it's not "general anesthesia" he started waking up and moving, so they had stop, medicate him some more and re-do many images.

I'm hoping that on July 3rd they just do the section of the spine where he has the tumor (lumbar area), and not do the entire spine, since it's not necessary. A nurse at the hospital told me that even if the doctor orders a portion of the spine, they still go ahead and do the entire spine - regardless of doctor's orders, go figure.

Has anyone out there experienced this as well?

I think a second opinion might be necessary if you want to make absolutely sure your son needs another surgery, since it's so risky and delicate. Like in our situation, I absolutely trust our surgeon, but for my piece of mind, if our son were to need another surgery, I just might send Dr. Jallo the films and history just to see what he thinks.

Take care, and I hope Wyatt is feeling well.