Dr's think son has NB
 

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04-10-09 09:10 PM
momtomicah
Dr's think son has NB
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 Alot has been going on with my dear son Micah these past 2 months.  Micah developed RSV and Bilateral Pnuemonia at the end of Feb.  He was hospitalized for two weeks with this because they couldn't get him off the o2 without destating while sleeping.  After 2 weeks of hospitalization the dr's finally agreed we could take him home on o2 and an apnea/cardiac/pulseox monitor.  Micah endured many test while in the hospital.  They found out he has silent reflux with aspiration, and has trouble swallowing (aspirates while swallowing thin liquids).  The dr's were hoping that the reason Micah was having issues with his breathing due to residual RSV. He had a sleep study done a few weeks ago where it was found out that he had 106 respitary episodes in 40 minutes...one an hour is normal.  He also has too much CO2 around his face while sleeping and hypoventalates.  The pulmonalogist wanted Micah to have a CT done since he still couldn't figure out why Micah was having so many issues. On Wednesday Micah had a CT chest scan done to see if something was going on that would cause him to have breathing issues since he's been RSV free for over 7 weeks and still destating drastically while sleeping if not on o2.  The CT scan went fine, Micah who is 5 months (on Monday) did great during and after the scan.  My husband and I were trying to rest on Wednesday afternoon when I got a call from the pulmonlogist who told me he had bad news...Micah has a mass in his left lung and him and the radiologist both think cancer...more specifically neuroblastoma.  We got this call at 1pm and by 3pm we were sitting in the oncologist office.  The oncologist is thinking cancer also and is having Micah get another CT scan on Monday...this time of his brain, chest, and kidneys, liver...etc. to see if there are other masses.  The dr. also said that Micah will most likely have surgery in about 2 weeks to get the mass removed...thankfully the  mass is very small.  Micah has had no other issues other than with his breathing, he is a seemingly healthy baby.  The bad part about all of this is not only does he have the mass but the oncologist doesn't believe that that is what is causing his breathing issues...he thinks there is something else going on with him as well.  So we are up in the air right now...frustrated and scared.  While we don't have a firm diagnosis yet we are scared that it is NB.  He did have bloodwork taken and it all came back fine....can he still have cancer or nb with good bloodwork?  I guess I always thought that cancer showed up in the blood.  

04-11-09 02:25 AM
dman6
Re: Dr's think son has NB
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I am sorry about your son, my son was 5 1/2 months old when he was diagnosed with neuroblastoma. In regards to the blood work, this unfortuantly can come back normal and he can still have neuroblastoma. My son's blood work came back normal, however the oncologist wanted to have chest x-rays done just to be on the safe side. The chest x-rays did show a mass on his cervical & thoracic spine. I know that it is common for VMA & HMA levels to be increased in the urine, and this is part of my son's routine check up, now that he is NED (no evidence of the disease). Have they done any urine samples?

04-11-09 08:17 AM
momtomicah
Re: Dr's think son has NB
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 we haven't done any urnie test yet.  we are in shock still and just in the very very beginning stages.  i really hope that they are wrong.  Thank you for replying.  How is your little one now?  Did they just remove it surgically or did he have to go through chemo also???  Hopefully they will do a urine test soon.  

04-11-09 09:09 AM
dman6
Re: Dr's think son has NB
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He has had no evidence of the disease since December, however they were unable to remove the mass, due to the location on the spine. There would actually be more risk if they removed it at this time. Since he has no neurological problems at this time they are just going to continue to watch it. He went through 4 rounds of chemo and had no evidence of the disease, however we had know at that time that they were not considering surgery, so we had 2 more rounds.

04-20-09 01:03 AM
Kenneth
Re: Dr's think son has NB
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Sorry to hear about all this -Quick education from a father of a son with NB . Be demanding get an MRI done of all areas . It took them three hospital visits and a month of pain and aggravation to find out we have stage IV Neuroblastoma . Blood shows good - urine can be tricky but can show it . NB usually starts on base of spine or Kidney adrenal gland . MRI- MRI is the only way w/ biopsy . It seems you are headed in the right direction . How old is your son? I am in Florida ..

youragentkenneth@yahoo.com

 

04-20-09 08:06 PM
momtomicah
Re: Dr's think son has NB
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 My son is 5 months old.  We have an MRI scheduled on Thursday afternoon but it's only of the chest.  We also meet with the chief of oncology at a local children's hospital on Wednesday morning.  Blah.  I can't remember what I had written earlier but we had been going to one hospital and weren't very happy with them and are now switching to a great children's hospital.  We are really nervous about what is going on with our son and everything i've read said it is very unsual for NB to start in/on the lung and that is usually where it spreads to...but so far that is the only place they have found what they think is NB.  We are in Missouri.  

05-02-09 12:52 PM
momtomicah
Re: Dr's think son has NB
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 Update:  Turns out Micah does have NB.  He had his mass removed on Monday.  The mass was located in his left chest cavity near the spinal colum but not touching thank goodness.  When he has his first CT scan done it only measured about 1.5cm at his MRI it measured about 1 inch, when it was removed on Monday it was the size of a golf ball.  I cannot believe how fast this mass grew.  We got the results of the pathology of the mass on Thursday...it is positive for NB.  Micah will have a bone scan and bone marrow aspiration this coming week so they can stage the cancer. We are hoping that since they removed all fo the mass that there are no other ones and that he only has stage 1.  I have a question though...since they removed the whole mass does that mean if there aren't any other masses that he is considered cancer free???  

05-03-09 06:59 PM
dman6
Re: Dr's think son has NB
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05-03-09 06:59 PM
dman6
Re: Dr's think son has NB
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05-03-09 06:59 PM
dman6
Re: Dr's think son has NB
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