Bad news from our MRI

[CarolynnMarilynn]

My son, who has neurofibromatosis, had an MRI last week. The next day (uh-oh) we got a call from his paed's secretary asking me to call. I tried and the office was closed. I was up all night at a birth (had a run of 6 births in 9 days : this week) and when I woke up from sleeping she had called back another two times (uh-oh again). When we finally spoke, she told me that the neurosurgeon and his paed had already met to discuss the MRI (crap -- this must be really bad news) and that he had to be seen ASAP.

Apparently he has a "fibroma on his spine in the mid-thoracic region". She didn't have more detail, but said a follow-up MRI is being booked for two months' time "in case the decision is made to wait". So we are waiting, and I am trying not to freak out, for his appointment next Tuesday morning. So we are jumping the queue for the MRI and the neurosurgery consult -- which worries me because it is being deemed urgent. I don't know if the fibroma is on his cord, the spinal bones, muscle, or surrounding nerves. I guess if it was really bad, we'd have been called to come in that day.

Dealing with a chronic, progressive disease totally sucks, even just being the mother.

[teacup]

I'm wishing you strength. Don't forget to breath.

[adtake]

Hugs and thoughts being sent your way.

[Finch]

I will keep you and your son in my prayers.

[fek&fuzz]

My brother has NF. He is 31 now. He had lots of fibromas growing up, and still does (the lumpy skin) mostly on his arms, chest/back and legs. And lots of coffee spots.

He had a large tumor in his abdonmen a few years ago. I think it had been there for a while, but he was never bothered by it until it started to affect his golf game by pressing on some nerves and causing numbness in his foot. When he started going to drs. to see about surgery, they kept saying it was cancer (as if he could have lived with a huge cancerous tumor in him that long) and we were so freaked out with each new test. Finally they took it out (I think it weighed 6 lbs) and it was completely benign. He still has numbness in his foot but it's not as bad (and he knew it was an expected side affect of the surgery.)

My parents never told us, that I can remember, that my brother had NF when we were growing up. We knew he had coffee spots, but I have a couple of them and they never said those are from his NF. I just remember one day we were teasing him or something as siblings do and he went to his room. My mom got really mad at us and said "You know he's different from you kids, he has NF. He could have been blind or retarded." It sort of took us by surprise and we didn't really know what to say. It would have been much better if they had told us all along that he had NF, and explained what it was, and dealt with it more openly.

Sorry to hijack your thread with my own story... I hope everything goes well for your son.

[wendygrace]

My thoughts are with you.

[Bearsmama]

Oh, Mama, I'm thinking of you and your little one.

[fullermom02]

My thoughts and prayers are with you also. May God grant you the strength and grace to deal with all you are being faced with.

[**guest**]

I hope everything turns out ok.

[StephandOwen]

[kristenburgess]

[blueyebutterfly]

Oh Carolynn {{HUGS}}. Your son and you are in my thoughts.

[monocyte]

s

[mamaverdi]

You and your son are in our thoughts.

mv

[gsmom]

Thinking of you and your son.

[JohannasGarden]

Lots of hugs to you and your family, mama. We have just recently been investigating NF for my 5 y.o. DS--it turns out he has 6 CALs, but some are only seen with that black light lamp. His neurologist is concerned about them because of his ADHD type issues and because he has Tourette's. We have our first MRI on June 20, and I have some idea about how we would feel to get news like you got. I am so sorry it turned out this way for you. I know from my reading so far that some of these tumors cause lots of problems, some cause none, and there are lots of wait and watch ones where you are just uncertain. The uncertainty is really a pain, and it's too bad you have to wait just to find out what the doctor(s) think.

My thoughts are with you and your son.

Sherri

[CarolynnMarilynn]

Thank you everyone for your kind words and compassion. I really need some space in my life to have that really good cry I need, but life hasn't allowed that yet. Maybe I am just supposed to hold it together for now. The tears started to leak out when I was at the gym lately and listening to Coldplay (always makes me teary, alas...) and I was doing a fast walk on the treadmill, crying away. I don't think anyone noticed though, or gave me the privacy I needed if they did.

It helps that a woman I work with has an older son with NF, and has gone through some difficult medical issues with him.

We have had a fair amount of participation in the medical system for Kai already, so feel pretty comfortable navigating it. Kai has had an optic nerve glioma, has tons of cafe au lait spots, multiple fibromas, and two plexiform fibromas (small ones though). He sees an OT, was identified as a Special Needs kid at school, and so are confronted every day with how he is unique and special. His sister eclipses him in physical ability and that makes him really sad because he is almost 2 years older and she is just so much more physically able, and a brave do-er, while Kai is a reserved and very intimidated with anything physical. These things all make me sad and worried.

On the other side, he is very bright, helpful and totally a well-behaved kid (not that we 'trained' him or anything stupid, he just likes structure and likes to follow rules.) He's the kind of kid that when you call him, he drops whatever he is doing to come answer, sweetly "Yes Mom?". He makes my heart happy.

Anyways, just needed to write those things. Thank you again for helping me.

Carolynn

[mamaverdi]

[pilesoflaundry]

[kalynnsmom]

Tons and tons of hugs 99: My 3 year old also has NF1 and it's so difficult to hear that kind of news. She has a plexiform fibroma underneath her tongue as well as optic gliomas. My thoughts are with you guys!