One of my twins was diagnosed with a possible Cholesteatoma yesterday by an ENT. We went today for the CT w/ and w/out contrast. From all of the reading I've done (evil google) something doesn't fit. He has effected right side Bells Palsy that first showed Saturday. This was the only "symptom" he had. When I took him to the ped Sunday he was diagnosed with a severe (bulging) ear infection and Bells Palsy and put on antibiotics. They wanted to wait til Wednesday to see if it corrected the Palsy as the antibiotics worked. Something just didn't seem right so I called the ped back Tuesday morning to have him seen. He immediately sent us to the ENT who did a hearing test (failed the effected side), looked in his ear and stated it was a cyst not an infection. He started him on Prednisone and scheduled the CT and an appt with another ENT in his practice who specializes in pediatric ear surgery. We see him tomorrow to find out what the CT found and the course of treatment. The CT tech was confused as to why we were doing contrast and the doctor explained that it was to see if the "mass" had a blood supply and where it's being fed from. Not one thing I have read mentioned blood supply to a Cholesteatoma. Has anyone else dealt with these or something similar or works in this field? Something just seems off, and I don't think I got the full "story" from the referring ENT. Thank you for any info and getting through this very long post!
Sounds so stressful for you right now. Sorry I haven't heard of this before, but wanted to say best of luck with the CT results
I am an audiologist and have seen several people with cholesteatomas (both congenital and acquired). I'm not sure I'll be able to answer your questions about "blood supply", though. it doesn't have one. maybe he wanted to rule out a possible tumor? Here's a good link to a description of a cholesteatoma: http://www.entnet.org/HealthInformation/cholesteatoma.cfm
We go for a biopsy tomorrow. I was right something wasn't adding up and I didn't get the full story. They are 90% sure he has a rhabdomyosarcoma tumor. They are 99% sure that whatever it is is malignant. I'm on auto pilot right now and trying not to google until we get a for sure diagnosis. I am a single Mom and have no clue how to even begin to handle this type of thing. My XH is not going to be much help in the support department for myself or the boys. We get the diagnosis back on the 20th. Sorry I'm rambling any words of wisdom, good support groups, excellent pediatric oncologists would be great. I don't trust myself to go near a search engine right now.
Where do you live, that will help if some one has a dr recommendation? Please let us know what is happening.
I'm in Dayton, OH. We found out from the biopsy today that it is malignant. The pathology on what exact kind of tumor is going to take a couple days, but the ENT is still leaning heavily towards a rhabdomyosarcoma. The ENT today said its in a favorable spot so thats good. We have a referral in to Children's in Cincinnati but they won't see us for 2-3 weeks until after we get the pathology, which is unacceptable with the facial paralysis. So my ENT booked us with an Oncologist at Dayton Children's on Monday to get started and we will get a second opinion from Cincinnati in a few weeks. I'm feeling a little better with knowing it's for sure malignant and it's time to get to work instead of hoping for that tiny chance of benign. I'm also glad that we already have an appt with the oncologist so as soon as the type is nailed down we should be able to start radiation/chemo by the end of next week. As long as I keep busy I'm fine, but the second I stop it's like a dam breaking. Any info anyone could point me toward would be amazing. Thank you for your kind words and concern.
I have no words. I am so, so, so sorry. Do you have family in the area? Are you part of a church or MoMs group? Can you ask the hospital to assign a social worker? You don't need to do this alone. I am so sorry, I wish I could help you in some way. Please tell us if there is anything you need. You'll be close to my heart.
I am so sorry to hear this news. I second Steph's suggestion to set up a support network around you while you go through this. Perhaps your son's doctor can refer to some resources that could help. Sending so many good thoughts your way, and please keep us posted about how things are going.
Many thoughts and prayers for you and your little man! I'm so sorry you have to go through this! :hug:
Many thoughts and prayers with you and your son. I second finding a suppor network of sorts. And if there is any way TS can help, don't hesitate to ask! :hug:
My thoughts go out to you. I have a good friend that is a nurse practitioner in the pediatric oncology unit. If you have some exact questions, I can ask her and send you what her opinion is. She is a saint and has been doing this for years. I will keep you guys in my prayers that this is curable....
I am so sorry. I will keep you and your family in my thoughts and prayers. Please keep us posted :grouphug:
Again thank you all so much. Just to know he has people being positive for him is such a comfort. My nanny that has been with me for a year is already starting to work a new schedule out so we can keep the other boys day as normal as it can be so I can focus on Broden. I just sold my house and was planning a move a little closer to work, but that's being put on hold. We are going to be moving in with my Mom for the time being so I don't have to focus on mortgage and money while we start this fight. My Brother and SIL are in Columbus, but plan to be around as much as possible for us (they are kidless). My XH has so far done a 180 and plans to try and be there for the big appts and let me handle the day in day out stuff. He's going to try and make sure I don't have to worry about returning to work until we get Broden into his treatment routine. It has been a very scary week, but I feel like we at least have a plan in place. I'm trying not to look too far ahead. Sorry again I'm rambling.
You're not rambling at all. We're here to listen. It sounds like you've got some plans in place that should help you throughout treatment. I'm glad to hear that. I cannot imagine how you're feeling. Please talk to us (ramble, he he) as much as you'd like. I know that many of the amazing women on here will support you in whatever way possible.
Oh my goodness I am so very sorry. You are totally not rambling at all!! You guys are in my thoughts and prayers. We are here for you!
I am so sorry. Please come back here to talk any time. You and Broden have a lot of people thinking and praying for you. :hug:
I am so very sorry for Broden's diagnosis. I am glad you are beginning to get a plan in place and keep the ball rolling. We are always here to listen and support. You can ramble any time you want to. :hug:
This has all been happening so fast, but in my head it seems like months have passed since we were told it was malignant (I can't say the C word yet). Since they are hoping to start treatment by the end of next week I have set up a CaringBridge site to help keep everyone up to date on his progress. Just the one surgery he went through was exhausting trying to make sure just family was updated so I'm hoping that will take a little stress off. The site is Here. I am going to try and keep it as up to date as possible. Thank you for your thoughts and prayers.
I am so sorry to hear about Broden. I have both personal and professional experience with sarcomas (my son had osteosarcoma and I am a clinical therapist). Please pm me if you want to talk. I totally understand how busy you are but just wanted to reach out. One suggestion I can give you for now is to connect with the ACOR- Rhabdo-kids support group. They are awesome and can provide you with everything you'll need to know on this journey. There is such comfort in connecting with other parents who are going through this also. I hope you have a chance to check them out. Here is a link to the site. You will need to subscribe (on the right) and they will send you the link to sign in. http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A0=RHABDO-KIDS I will be thinking about you and sending positive thoughts and prayers for you and your family. Lindy
After my initial melt down I pulled it together. We've been in Children's since Monday for his port surgery/lumbar puncture/bone marrow aspirations. We were supposed to be starting chemo on Wed but it got delayed 2 days because they changed him to a stage 4 so the treatment plan changed. So we've done 2 doses of chemo and we start radiation on Thursday the 5th. He has 28 radiation sessions and 54 total weeks of chemo on the protocol. It's going to be a long road, but he's doing amazing so far. The biggest challenge has been being away from his brothers. They've come to visit twice, but he's never really been apart from them. Just trying to take it a step at a time. Thank you for checking in and keeping us in your thoughts.
Wow, that is pretty intensive treatment. It sounds like his doctors are good, addressing it aggressively and I am so glad that he's been handling it well. Sending you tons and tons of good vibes. And I think you're entitled to a meltdown! Please come here and vent or cry or laugh or whatever you need to do any time. :grouphug:
I'm so excited I want to jump up and down screaming! We are only a week into treatment but the part of the tumor in his ear canal has already noticeably shrunk! I'm in shock. I just hope it keeps progressing this way. We are so blessed. I have no doubt all the love support and prayers are helping him heal.
I just read this thread for the first time today. I am sorry you are going through this, and I hope and pray everything will be fine with Broden. I am glad to hear his treatment is going well so far.
