How it all started....

Brace has cancer.....

We are happy to have anyone on this list that is interested. Just have people that are interested ask to join. The name of the group is Brace is the Man.

Sept 5th: Brace had his first severe nose bleed. In those 3 weeks waiting for surgery he had 30 nose bleeds during that time.

Oct 10th: Brace had nose surgery to correct the 2 cm hole in his septum.

Oct 12th: We were told that the found a tumor on the right side of his nose and they tried to get a lot of it but couldn't get it all because it was connected to bone and other vital areas.

Oct 15th: We were told the biopsy came back with a diagnosis of Sinonasal undifferentiated carcinoma, SNUC, a rare and aggressive nasal cancer.

Oct 22: We saw our first cancer surgeon Dr. Luu, an ENT cancer surgeon. He did a cancer fellowship at UCLA about 10 years ago. Kjarstin and James came with us to the appointment. He is the Director for a Cancer Center connected to Mission Hospital

Oct 25th: We have a PET scan and then next week we will have an MRI and a CT scan at Mission to see where the cancer is other than his nasal cavity.

How is Brace? He is working every day. His current symptoms are fatigue, headaches, and eye pain and pressure. He looks great and is functioning. The doctor said he should do everything but housework.

Since his nose surgery to correct his septum on Oct 10th his nose has stopped bleeding since they took out a big chunk of the tumor. They know it will grow back but it is a temporary stop.

What are the treatment options? Radiation, Surgery and Chemo.

What stage is he at? We don't know until we get the scans back but typically the symptoms don't show until a late stage.

What are we doing now? Making appointments with other doctors for 2nd opinions.

Are there trials for SNUC? We are told that SNUC is so rare that there are no clinical studies or experiments for it.

Thank you for your texts and phone calls. Brace has been touched by how many of you have reached out and worked hard to find great doctors. We love you.

Please pray that they will know the right order of treatment. We are going to do a special prayer and fast on Sunday, Nov 3th.

Comments

Tumor is Large / Small Cell not SNEC

October 25 at 5:40 PM MRI/CT: The tumor is large measuring 5.2 cm by 3.1 cm, but it seems to only be on one side. According to these tests it is NOT touching the brain and is NOT in the lymph nodes. It says the eyes are in the right position. The tests say he probably can't smell. :) We meet with the oncology nurse practitioner for Dr. Luu and she explained the reports for the MRI and the CT. We think Dr. Luu will review on Monday. On Wednesday we see the eye doctor to see what is happening the re. Final Biopsy came back: Small cell neuroendocrine carcinoma of the paranasal sinuses (SNEC) is the new diagnosis. From Google - this is an uncommon tumor. (Before they thought it was SNUC) This tumor usually occurs in the lungs, the extra-pulmonary form accounts for only about 4% of all cases. Primary SNEC of the paranasal sinuses is extremely rare; only about 76 cases have been reported in literature. Unfortunately due to the rarity of this neoplasm, there a...

MRI, no Brain Surgeon, Friday Radiation

Liver MRI : Brace had an uneventful MRI this morning. It takes a while for the write-up and CD. After talking with Dr. Carroll the other day I'm not that worried about it. He then ran to LA to work with a client today. Trust: One of my clients is an estate lawyer and was kind enough to meet with me this morning to setup our family trust. Everything should be set by next week. If you need a referral, she was amazing and gave me great advice. Dana and LouAnn Lake came to visit Brace this afternoon from Arizona. It was a treat to see them. I forgot to take a picture. Brain Surgeon : He was on call at the hospital and had two surgeries. We postponed out appointment to next Wednesday. Fast Radiation: We are coming home now from radiation. It was his fastest yet. He doesn't complain or freak out, which they said is uncommon. Until we did this I had no idea what radiation on your face really meant. We are thrilled with the doctors and the techs her...

A little better day....

So knowing there is such great progress makes our nightmare easier to deal with. Thanks to your prayers, we both were able to sleep. 10 hours for Brace. I was able to exercise which makes everyone happy. :) On my bike I rode 15.5 miles in an hour thanks to watching the VidAngel version of Jake Ryan saving the world in Venezuela. I'm a Zwifter if you know that that is. After riding, radiation called and said they were ready for us at 1:15pm today in the new cancer center. Christine and Jill Clary came this morning at 9:45am and helped me get the house ready for our family party on Monday. Oh how sweet that was..... Upon waking up he ate the new formula through his g-tube, half a carton 250 calories, before taking a shower. After the shower, he threw up stomach acid and formula. Very painful process . :( . He threw up an hour later too. We went to the treatment at 1:15 at Mission. (I think that is treatment #20 of 33 treatments) ....

Brace is the Man

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