Ganglioneuroblastoma...

donnydon

Hello to all
Just felt i had to tell our story!

Around Easter 2008 my girl (7yrs) had a slight cough...(how many kids visit there doc with a cough?!)
After some 4-5 weeks it had'nt cleared so i took her to our GP.
A course of antibiotics did'nt help and GP, i beleive, on gut instinct, asked for an urgent x-ray...
Thursday afternoon x-ray, friday morning EARLY morning call from GP saying the hospital is waiting for you!
MRI that friday afternoon...mass found on her lung?!?
Our hospital consultant was honest enough to say it was not something he had ever experienced and referred us straight to our nearest Specialist centre...

By the monday morning we were in BRISTOL Childrens(UK) for diagnosis.
After many blood test, urine, MRI, ultrasound and x-rays, biopsy came back with Ganglioneuroma which showed as benign.
BUT the surgeon said they do have a habit of disguising themselves...
So based on this we were sent home to wait for a surgery date.

In the last week of July we had a call that a cancellation had arisen, would we take it?
Umm YES! so two days later we arrived back in Bristol for more blood tests, ecg and ultrasound of her kidneys...

Her surgeon had been very open & honest with both her and me in explaining everything...the nurses were fantastic (and very busy).

So on the wednesday she had a 3 hr proceedure to remove a 10 by 8cm 'lump' from her spine at T8 & T9 which was more attatched than the MRI showed and pathology showed it to be GANGLIONEUROBLASTOMA.

By saturday they stopped her morphine and by monday we were home!

MIBG (radioactive girl!) approx 1 mth later was clear as was her bone marrow...

BY THE GRACE OF GOD, NO CHEMO OR RAD therapy...just MRI monitering every 3mths for the forseable future...

She had no outward sign of illness, but thanks to our GP she is back to school and blaming me for making her have more needles at each doctors visit

I WOULD JUST LIKE TO SAY WE HAVE BEEN LUCKY BEYOND BELIEF...

feather80

That's great news
That's great news Donnydon!

You were lucky that your GP was competent and did the right things so that it was diagnosed as fast as possible. It's not always the case, sometimes GPs just dismiss people, saying that the patient doesn't have anything wrong.

Is Ganglioneuroblastoma a cancer then? I suppose that if there is no chemo and no radiotherapy, it's because the tumor was entirely removed by the surgeon? Is that right?
That's great news anyway. Your daughter will understand later on, how lucky she is not to have any chemo or radiotherapy.
Was the 'lump' on her spine or on her lungs? Or both?

It's wonderful news that your daughter is back to school and well.

Talk to you later
Feather

donnydon

feather80 said:

That's great news
That's great news Donnydon!

You were lucky that your GP was competent and did the right things so that it was diagnosed as fast as possible. It's not always the case, sometimes GPs just dismiss people, saying that the patient doesn't have anything wrong.

Is Ganglioneuroblastoma a cancer then? I suppose that if there is no chemo and no radiotherapy, it's because the tumor was entirely removed by the surgeon? Is that right?
That's great news anyway. Your daughter will understand later on, how lucky she is not to have any chemo or radiotherapy.
Was the 'lump' on her spine or on her lungs? Or both?

It's wonderful news that your daughter is back to school and well.

Talk to you later
Feather

Ganglioneuroblastoma
Hi Feather

Thanks for your reply...

Our GP, luckily, was alerted by her reduced breath sounds to the right side!
I still think it was his 'gut instinct' that made him follow it up...we had seen a different GP at the same practice a week previous who just sent us home!

Our surgeon at the time said the outline of the mass was quite well defined.
The MRI showed it to be attatched to a nerve and pressing onto the spine and back of the lung (hence the cough).
He only expected to take 40 mins to remove it, but after 3hrs he came to me to say the it was also attatched at T8 & T9 and had started to intrude towards the spinal canal!!
His exact words were 'i am confident i've got it ALL out'.
He did'nt have to remove the nerve (which would cause more problems if he had) but did have to break a couple of ribs...

I asked how many of this type of tumor had he seen, his reply, so far in his career, Five.
(One was my lil'girl, another was a girl in the intensive care bed next to us...!)

We all still expected it to be a Ganglioneuroma, but after further tests, they found blastoma cells, which appeared to be confined.

My little one has a very neat scar we call 'shark bite' and is doing well,although she will be monitered for the next 2-5 years with contrast MRI, bloods & x-rays.
The paediatric oncologist we see is hopefull of No recurrence.

On the whole we have been lucky, living in the UK & having the National Health Service.
Also the charities that helped me with accomodation, Sam's house & Clic house, it makes you very thankful.!

Donnydon
XXX

agelle

donnydon said:

Ganglioneuroblastoma
Hi Feather

Thanks for your reply...

Our GP, luckily, was alerted by her reduced breath sounds to the right side!
I still think it was his 'gut instinct' that made him follow it up...we had seen a different GP at the same practice a week previous who just sent us home!

Our surgeon at the time said the outline of the mass was quite well defined.
The MRI showed it to be attatched to a nerve and pressing onto the spine and back of the lung (hence the cough).
He only expected to take 40 mins to remove it, but after 3hrs he came to me to say the it was also attatched at T8 & T9 and had started to intrude towards the spinal canal!!
His exact words were 'i am confident i've got it ALL out'.
He did'nt have to remove the nerve (which would cause more problems if he had) but did have to break a couple of ribs...

I asked how many of this type of tumor had he seen, his reply, so far in his career, Five.
(One was my lil'girl, another was a girl in the intensive care bed next to us...!)

We all still expected it to be a Ganglioneuroma, but after further tests, they found blastoma cells, which appeared to be confined.

My little one has a very neat scar we call 'shark bite' and is doing well,although she will be monitered for the next 2-5 years with contrast MRI, bloods & x-rays.
The paediatric oncologist we see is hopefull of No recurrence.

On the whole we have been lucky, living in the UK & having the National Health Service.
Also the charities that helped me with accomodation, Sam's house & Clic house, it makes you very thankful.!

Donnydon
XXX

gangioneuroblastoma
Hi
How is your daughter?
I read your story over the weekend and passed it onto my friend. Her little girl (7years)was diagnosed with Ganlioneuroblastoma 3 1/2 months ago and is undergoing treatment, your daughter's story has given her strength.
I would be so grateful if you could contact me, my friend is sensibly not researching anything on the internet, so I am on her behalf - at her request.
I hope you don't mind me asking this of you, I know that it means thinking about a very scary and painful time, but yours is such and uplifting story.
best wishes
agelle

Jonesey

Ganglioneuroblastoma
I just read your story and it was like reading my own. My 4 year old daughter has just been diagnosed with Ganglioneuroblastoma. The tumor was removed successfully on Thursday. Like you, it was discovered accidently on an unrelated chest x-ray after she had a mild cough for a few days. My daughter had no outward sign of illness and we're hoping it's early stage and low risk - everything is pointing towards that. We're currently waiting for the final path report from the surgical biopsy.

Thanks for posting your story - it's given me hope and comfort.

marcyjo2

Jonesey said:

Ganglioneuroblastoma
I just read your story and it was like reading my own. My 4 year old daughter has just been diagnosed with Ganglioneuroblastoma. The tumor was removed successfully on Thursday. Like you, it was discovered accidently on an unrelated chest x-ray after she had a mild cough for a few days. My daughter had no outward sign of illness and we're hoping it's early stage and low risk - everything is pointing towards that. We're currently waiting for the final path report from the surgical biopsy.

Thanks for posting your story - it's given me hope and comfort.

Ganglioneuroblastoma
I am amazed by how similar your stories are to my own daughters.
On October 28, 2008 I took my 3 year old daughter to her ped doctor because she had been vomiting on and off for a week. To rule out pneumonia she ordered a chest xray. We were devastated when we found that there was a large mass in the left side of her chest.
We were admitted immediately to the ped oncology department at the University of Iowa. On October 30 the surgeon was able to remove 99% of her grapefruit sized tumor. Pathology came back, scans were done and she received the diagnosis of ganglioneuroblastoma stage II. We have also been so fortunate that we have been able to treat with surgery only and are currently following with ped oncology every 3 months for CT scans and labs. This last October we celebrated her 1 year cancer free and are trying to remain optimistic that this monster is gone for good. Please let me know if you would like to talk more about our experiences. It's good to have people to talk to who really understand! My email is marcy_dem@yahoo.com

Hope all of your babies are doing well!!

CammieDigs

I have to say, your story
I have to say, your story just brought me to tears....I have never in my life met anyone else who had Ganglioneuroblastoma. I was diagnosed at age 2 (now almost 26), and had two tumors removed from my right lung both about the size of baseballs.

ajadestar

CammieDigs said:

I have to say, your story
I have to say, your story just brought me to tears....I have never in my life met anyone else who had Ganglioneuroblastoma. I was diagnosed at age 2 (now almost 26), and had two tumors removed from my right lung both about the size of baseballs.

Me Too
I have never met anyone with this cancer eaither. I also had it when I was 2 yrs old. I am now 29. I am thankful that there are so many surviors. At the time I had it they knew nothing about it, except it was only found in small children and was killing them quickly. Out of the 9 that had it when I did, Im the only one that survived. It was accidently found in an xray in my case also. My mom was determined there was something wrong with me because I was a toe walker. I cant tell you how many times she was sent home and told it was a phase that I would grow out of. But she refused to accept that as an ansewer. Mothers intuition. It didnt show in any of the MRI, or Cat Scans. Only xray. It was free flowing behind my left kidney, wrapped around my spin. When they found it, it was dormit. They had never seen it in this stage before and just knew they had to hurry and get it out. I have massive nerve damage and a few other disabilities because of it.
Im Very curious if anyone else has side effects from it and what they are?

aisling13

Ganglioneuroblastoma
Hi,

Was just wondering if anybody has experienced a ganglioneuroblastoma tumour as an adult?
I was diagnosed at 23, I am 28 now. I underwent chemotherapy for 6 months but the tumour didn't shrink. I have a large abdominal tumour on my right kidney, surrounding the vena cava and is pushing into my spine. It cannot be removed as it surrounds the main vein and to remove the tumour would be fatal.

Last year despite being told by numerous doctors and specialists that I would not be able to conceive never mind carry a baby, I fell pregnant and had my son by emergency C Section at 32 weeks.
He stayed in NICU for 3 weeks and then we were able to take him home. He is prefect in every way and is progressing like any full term baby.

I am currently waiting to get word from The Royal Mardsen Hospital in London regarding radiation treatment. They are unable to treat the whole tumour but if they can shrink it at my spine then that at least it would relieve the pain.

I get CT and MRI's every 3 months but other than that nothing is really being done.
Just wondering if anybody has a similar experience with regard to this tumour as I understand it is very rare in adults.

dancer21

aisling13 said:

Ganglioneuroblastoma
Hi,

Was just wondering if anybody has experienced a ganglioneuroblastoma tumour as an adult?
I was diagnosed at 23, I am 28 now. I underwent chemotherapy for 6 months but the tumour didn't shrink. I have a large abdominal tumour on my right kidney, surrounding the vena cava and is pushing into my spine. It cannot be removed as it surrounds the main vein and to remove the tumour would be fatal.

Last year despite being told by numerous doctors and specialists that I would not be able to conceive never mind carry a baby, I fell pregnant and had my son by emergency C Section at 32 weeks.
He stayed in NICU for 3 weeks and then we were able to take him home. He is prefect in every way and is progressing like any full term baby.

I am currently waiting to get word from The Royal Mardsen Hospital in London regarding radiation treatment. They are unable to treat the whole tumour but if they can shrink it at my spine then that at least it would relieve the pain.

I get CT and MRI's every 3 months but other than that nothing is really being done.
Just wondering if anybody has a similar experience with regard to this tumour as I understand it is very rare in adults.

Diagnosed at 21
Hello Aisling,

Yes I was 21 when I was diagnosed with Ganglioneuroblastoma. I'm now 28 form uk. I too was told how rare this tumour is in adults, something in the region on 20-30 world wide!

I'd be happy to exchange/discuss stories and tell you anything I know about it if you are still looking for info.

Let me know

hana_stone

dancer21 said:

Diagnosed at 21
Hello Aisling,

Yes I was 21 when I was diagnosed with Ganglioneuroblastoma. I'm now 28 form uk. I too was told how rare this tumour is in adults, something in the region on 20-30 world wide!

I'd be happy to exchange/discuss stories and tell you anything I know about it if you are still looking for info.

Let me know

Diagnosed at 18
Hello,

I was just diagnosed with it two weeks ago, age 18. Mine is pretty large, and they think I have had it since I was born. My doctor also said how rare these are, with only about 45 recorded worldwide.

If anyone could tell me about their treatment and their story, I would appreciate it. I start radiation in two weeks...

Thank you!

cgmt

ajadestar said:

Me Too
I have never met anyone with this cancer eaither. I also had it when I was 2 yrs old. I am now 29. I am thankful that there are so many surviors. At the time I had it they knew nothing about it, except it was only found in small children and was killing them quickly. Out of the 9 that had it when I did, Im the only one that survived. It was accidently found in an xray in my case also. My mom was determined there was something wrong with me because I was a toe walker. I cant tell you how many times she was sent home and told it was a phase that I would grow out of. But she refused to accept that as an ansewer. Mothers intuition. It didnt show in any of the MRI, or Cat Scans. Only xray. It was free flowing behind my left kidney, wrapped around my spin. When they found it, it was dormit. They had never seen it in this stage before and just knew they had to hurry and get it out. I have massive nerve damage and a few other disabilities because of it.
Im Very curious if anyone else has side effects from it and what they are?

side effects
Hi Me Too - I'm 34 and I had it as a child too, and I have definitely been left with lasting effects. I'm also curious about the adult experiences of other survivors.
Mine was at the top of my left lung (it was causing a cough), so they went in under my left arm to remove it. There is a lot of numbness in the scar area, from my elbow to my shoulder blade. I also have a fair amount of nerve damage - my left hand is small and my fingers are unusually tapered at the ends, its skin is ridged and very dry, and my fingerprints are barely there. I don't sweat on my left side from the chest up (there's actually a straight line down the middle of my face, left half white, right half red, when I exercise), and my left eye was particularly affected. Because the nerve damage happened when I was so young, it never developed my brown adult eye color, so it's newborn-baby gray/blue, the lid is a little droopy, and the pupil is constricted.
Other than the nerve damage, my internal scar tissue is somewhat painful from time to time - when I run or swim, eat too much, or take a sudden deep breath. I'm really worried about how that would feel if I were to become pregnant.
Aside from all that, the last big problem I've been left with is my thyroid. As a child, I had radiation treatment after my surgery, and then as a teenager, I noticed a thyroid nodule. Because of my radiation history, they decided to remove the nodule and the affected half of the thyroid, leaving the other half to pick up the hormonal slack. Well, it didn't, so I've been on thyroid replacement hormones half my life. Also, the remaining half has since developed several nodules, but the doctor doesn't want to remove them because the surgery would be risky with all the scar tissue that's now there. So, aside from a lifetime of painful biopsies to keep watch for possible thyroid cancer, the problem is that this time the nodules are painful themselves, which has been a struggle. They've bumped up my thyroid hormone pill levels to try to shrink the nodules and reduce the pain, which has mostly worked, but the added hormone makes me anxious and jittery, so they have me on a beta-blocker to slow down my heart and balance the effect of the thyroid. I'm not crazy about that solution, but don't see another option.
The only other problem I can think of is that I'm also a huge hypochondriac - I mean, a cough that turns out to be cancer?? That pretty much set me up for a lifetime of medical anxiety!
I've never met another survivor either. What are your side effects?

ella_bean

ajadestar said:

Me Too
I have never met anyone with this cancer eaither. I also had it when I was 2 yrs old. I am now 29. I am thankful that there are so many surviors. At the time I had it they knew nothing about it, except it was only found in small children and was killing them quickly. Out of the 9 that had it when I did, Im the only one that survived. It was accidently found in an xray in my case also. My mom was determined there was something wrong with me because I was a toe walker. I cant tell you how many times she was sent home and told it was a phase that I would grow out of. But she refused to accept that as an ansewer. Mothers intuition. It didnt show in any of the MRI, or Cat Scans. Only xray. It was free flowing behind my left kidney, wrapped around my spin. When they found it, it was dormit. They had never seen it in this stage before and just knew they had to hurry and get it out. I have massive nerve damage and a few other disabilities because of it.
Im Very curious if anyone else has side effects from it and what they are?

Toe walker...
Hi Ajadestar,
So,so, SO nice to see you smiling...as the mother of a 2 year old who has ganglioneuroblastoma and was diagnosed in almost the exact same way as you were. What I find interesting is that she was a toe walker also and arm flapper, and my immediate concern was autism at around 15 mos. I had her diagnosed and was told that she was not autistic, above average intelligence, and she was probably presenting these behaviors as a way of dealing with stress or loud noise etc...still I couldn't shake the feeling of something serious being wrong with my child(sounds strange I know).
Several months later she was diagnosed by accident from a chest x ray that had nothing to do with her tumor. Our pediatrician tried to tell me that she had asymptomatic pneumonia and wanted to start her on a round of antibiotics. I KNEW in my stomach that she didn't have pneumonia, and I said she could begin antibiotics if I had her word that she would email it to someone who was a specialist in childhood cancers. I saw that x ray and knew if it wasn't pneumonia, then it was bad.
Our pediatrician said it wasn't that serious, but I told her I wouldn't start the antibiotics unless she promised me. I got a phone call at 6 am the next day(Saturday) from a surgeon in Los Angeles telling us that we needed to stop all antibiotics and drive there that day. It was wrapped partially around her spine, and they didn't know if it was malignant(neuroblastoma) or benign(ganglioneuroma) or "in between" (ganglioneuroblastoma), but they wanted to take all of it except the small area in the spine, because they were worried about extreme nerve damage, mobility etc. They thought that her body might absorb the remaining 2%. She did have very pronounced Horners Syndrome after the surgery (eye droop) but at almost 3 now, it has completely disappeared. She seems incredibly healthy other then that so far. Unfortunately we are in testing again, because the most recent MIBG showed some activity on the opposite side of her body, and her urine spiked a bit. The MRI showed the same spot with not enough info, so we are going for a CT scan next.
My fear is that they will want to take the rest out of the spine area and she will suffer extreme nerve damage, possibly lose her ability to walk. I'm also concerned about the monthly testing MRI, MIBG etc. I think issues with her thyroid are a very real possibility. How are you dealing with your after/side effects? You look healthy and happy in your picture.

Lions3

Daughter Diagnosed with Ganglioneuroblastom
My daughter was diagnosed with Ganglioneuroblastoma at age 14. She's had surgery to remove about 70%. The remaining is surrounding the spine and we were told it would not be able to be removed. She has gone through agressive chemo and radiation until about 8 weeks after radiation ended. She's had incredible back and abdomial spasms creating back pain which has been very difficult to treat. We are currently at Chrildren's Hospital, but it appears that the Dr's are having a very difficult time assisting her. We have taken very large amounts of valium and other muscle relaxers. We are on non-stop medication at the moment and are really trying to find relieve for our daughter.

Has any of you experienced similar situations and what was done? We are desperate for her.

childhood12

ganglioneuroblastoma
My son was diagnoses with this on his 5th birthday about three years ago. He has been really good sense they took out the tumor. Now he is having a lot of headaches. I don't know if he is just having headaches or if there is something I should worry about with his brain. I find whenever he gets sick I worry that the cancer has some back somewhere in his body. Does anyone on this talk boards ever heard of it coming back? I just am tired of having to worry if he has some form of caner again. He is 8 years old now and is loving life.

Thank you all for taking the time to read.

PS he didn't have to have any Chemo or Radiation. Just recheck every 3 months for two years.

donnydon

Update...
Hi All
sorry its been a long time in posting but i thought id do a quick update!
Darling daughter is coming upto 3yrs post surgery...
she had a right side thoracotomy (along the length of her shoulder blade-under her armpit...
we were warned of possible nerve damage...she had a 'numb' patch for a good 2 yrs, which has improved but will never be the same!
It itches/tickles now & again...our only problem has been fear...fear of needles, doctors or any situation that might even vaguely involve a needle! dentist visit is always a stress!!
Her self confidence fell thru the floor, which is something we still battle with...she lost a fair amount of weight in hospital and is still under-weight but eats like 'a pig'...
She is generally well and we are going up to yearly checks at xmas! yay...

I would also say, im the one who lives with a little niggle that everytime she coughs or has a temp, i go into protective mode...as a mum, recurrence is my fear.

dazzlemn

My daughter
My daughter assumed diagnosed with glanglioneuroblastoma. She is in Minnesota , working with u of m chiildrens hospital. She is 16 years old. The mass is above her Heart,behind hervleft lung. Stil doing tests. Expecting treatment plan in place this Friday . Any recommendation/ voices of encouragement are welcome.

kaylasmom

dazzlemn said:

My daughter
My daughter assumed diagnosed with glanglioneuroblastoma. She is in Minnesota , working with u of m chiildrens hospital. She is 16 years old. The mass is above her Heart,behind hervleft lung. Stil doing tests. Expecting treatment plan in place this Friday . Any recommendation/ voices of encouragement are welcome.

We know what you're going through...
My daughter is 6 years old and was also treated at Childrens Hospital Minneapolis and the University of Minnesota this summer. Her tumor was diagnosed on July 21st 2011, the tumor was removed on July 26th. Her tumor was in the right side of her neck, the size of an apple, and putting pressure on her airway.The jugular vein was on one side of it and the carotid artery was on the other. It was growing out of her Sympathetic nerve, which had to be cut in order to remove the mass. She was in surgery for 5 hours, they also took 6 lymph nodes from around the mass to test. Her follow up MRI is scheduled for September 21st to make sure that they really did get the whole thing. She has partial paralysis of her right vocal cord and referred pain from the incision site to the side of her skull. She also gets a lot of headaches from the nerves not really communicating right after the surgery. But the tumor was benign, so were the lymph nodes they removed from around it. They performed a bone marrow test and bone scan as well which were both also negative and normal. My child is lucky, I dont pretend that our story, while difficult to go through, is a happy one. The best thing that I can tell you about what you're experiencing is that #1- there are other people like you, we know what its like to not want to talk to anyone unless they too know what you feel. I didnt want to be around anyone who hadnt seen their child mortality and had to face it head on. And #2- your daughter is in very good hands. Everyone at Childrens Minneapolis was unbelievably amazing. Kayla's surgeon was incredibly skilled, her oncologist, extremely detail oriented.... these people have hearts. When asked how I wanted to proceed with her care I responded with, "this is the only thing in the whole world that matters to me, I live for her and I would die for her.... Im trusting you with her. What would you do if she was your daughter?"
I dont know the prognosis for where the tumor is located on your daughter, but I do know that even though you feel SO INCREDIBLY ALONE, and in complete free fall... you're not.

Jessinka

ajadestar said:

Me Too
I have never met anyone with this cancer eaither. I also had it when I was 2 yrs old. I am now 29. I am thankful that there are so many surviors. At the time I had it they knew nothing about it, except it was only found in small children and was killing them quickly. Out of the 9 that had it when I did, Im the only one that survived. It was accidently found in an xray in my case also. My mom was determined there was something wrong with me because I was a toe walker. I cant tell you how many times she was sent home and told it was a phase that I would grow out of. But she refused to accept that as an ansewer. Mothers intuition. It didnt show in any of the MRI, or Cat Scans. Only xray. It was free flowing behind my left kidney, wrapped around my spin. When they found it, it was dormit. They had never seen it in this stage before and just knew they had to hurry and get it out. I have massive nerve damage and a few other disabilities because of it.
Im Very curious if anyone else has side effects from it and what they are?

Ganglioneuroblastoma at 4 + spinal decompression&instrumentation
Hello Ajadestar,
My daughter was diagnosed with GNB when she was 4 years old (2006). Her tumour was so huge 15x12cm, wrapped around her spine, inside her spinal canal, in her chest. She had 9h surgery to remove 25% of her tumour and she developed scoliosis following this surgery. She had to wear a back brace for the scoliosis for 4 years and this year she needed an emergency surgery to remove her tumour from the inside of her spinal canal as it was pressing onto her spinal cord causing her limping, tripping over etc. She also had spinal rods inserted along her spine to keep her spine stable. After this surgery she suffered some nerve damage and her left side of her tummy doesn't contract so it's bulging out. She is facing more surgerie in the future for her spine (spinal rods lenghtening plus spinal fusion etc.)
Hope all is well.

wdbrenna

Jessinka said:

Ganglioneuroblastoma at 4 + spinal decompression&instrumentation
Hello Ajadestar,
My daughter was diagnosed with GNB when she was 4 years old (2006). Her tumour was so huge 15x12cm, wrapped around her spine, inside her spinal canal, in her chest. She had 9h surgery to remove 25% of her tumour and she developed scoliosis following this surgery. She had to wear a back brace for the scoliosis for 4 years and this year she needed an emergency surgery to remove her tumour from the inside of her spinal canal as it was pressing onto her spinal cord causing her limping, tripping over etc. She also had spinal rods inserted along her spine to keep her spine stable. After this surgery she suffered some nerve damage and her left side of her tummy doesn't contract so it's bulging out. She is facing more surgerie in the future for her spine (spinal rods lenghtening plus spinal fusion etc.)
Hope all is well.

GNB at 21 months, spinal decompression + instrumentation (x2)
Hello Jessinka,
Such a similar story! My daughter had most of her tumour removed at 2, but they didn't go inside her spinal canal then. By the time she was 6, her spine's curvature slightly increased but it was her neurological deterioration (limping, tripping over, etc) that made her have a spinal decompression and fixed titanium rods put in place (L1 to T1) her spine was badly eroded at places and, as I understand it, that was one of the many reasons she didn't get growing rods put in. As expected, her scoliosis was getting worse. Also, by the time she was 10, her mobility started getting worse - at first it was a slow deterioration but soon after it was getting worse quite quickly. Another urgent op in January 2010 - spinal decompression again, rods only slightly manipulated so her spinal cord won't get damaged. Success! She still has what docs call "a substantial amount of tumour tissue" (by now it's ganglioneuroma) in her chest cavity. Where are we now? She started getting some old pains in her legs again (intermittently), had some spasms (a few times only) in her thighs and her spine seems to be getting more curved. I just worry about the crank shaft of her spine getting out of control any time now. She seems to be growing much faster now. Do you know anyone with fixed rods inserted before the age of 10?
Hope your daughter is coping with it all.

dazzlemn

kaylasmom said:

We know what you're going through...
My daughter is 6 years old and was also treated at Childrens Hospital Minneapolis and the University of Minnesota this summer. Her tumor was diagnosed on July 21st 2011, the tumor was removed on July 26th. Her tumor was in the right side of her neck, the size of an apple, and putting pressure on her airway.The jugular vein was on one side of it and the carotid artery was on the other. It was growing out of her Sympathetic nerve, which had to be cut in order to remove the mass. She was in surgery for 5 hours, they also took 6 lymph nodes from around the mass to test. Her follow up MRI is scheduled for September 21st to make sure that they really did get the whole thing. She has partial paralysis of her right vocal cord and referred pain from the incision site to the side of her skull. She also gets a lot of headaches from the nerves not really communicating right after the surgery. But the tumor was benign, so were the lymph nodes they removed from around it. They performed a bone marrow test and bone scan as well which were both also negative and normal. My child is lucky, I dont pretend that our story, while difficult to go through, is a happy one. The best thing that I can tell you about what you're experiencing is that #1- there are other people like you, we know what its like to not want to talk to anyone unless they too know what you feel. I didnt want to be around anyone who hadnt seen their child mortality and had to face it head on. And #2- your daughter is in very good hands. Everyone at Childrens Minneapolis was unbelievably amazing. Kayla's surgeon was incredibly skilled, her oncologist, extremely detail oriented.... these people have hearts. When asked how I wanted to proceed with her care I responded with, "this is the only thing in the whole world that matters to me, I live for her and I would die for her.... Im trusting you with her. What would you do if she was your daughter?"
I dont know the prognosis for where the tumor is located on your daughter, but I do know that even though you feel SO INCREDIBLY ALONE, and in complete free fall... you're not.

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Hi Kaylasmom,

We have been in full tilt since my posting, and this is the first time I've come back to the site. Our daughter actually had surgery at Children's Amplatz at the U of M, on the day of your posting. Thanks so much for sharing: It really helps to know others are experiencing similarly on so many levels.

The team at the eleventh hour, determined best procedure was to go for complete removal: Tumor was about the same size as your daughter, but on the left side. 8 1/2 hours surgery with similar results/ feelings. Minor vocal cord impact, significant nerve damage in her left arm/ hand from brachial plexus interruption. We just had a CT scan and determined no active cells: GREAT NEWS! Rehab is focused on restoring her hand function (She is left handed, and is still not able to write with that hand)

My daughter is a junior in high school, and was getting ready for Debate/ Speech and all the activities a junior in high school was looking forward to when this all surfaced. We all have a new normal (My wife's words), and are learning to deal with it.

Thanks again for taking the time to share your experience: It means so much.

Best wishes for a good recovery for your daughter and her whole family, and best wishes during the holiday season..