Brian has successfully finished his cancer treatment! It hasn't been easy but he is done.

He was put on hydration about a month ago because he was having trouble staying hydrated with his throat being so sore. It has made a world of difference. Today will be his last hydration treatment.

He is also completely off all the little machines. He had a suction machine for the secretions that developed from the radiation. They were thick and made it difficult to breath and swallow. They also caused him to vomit which was a problem - not only because of weight loss but because his throat was raw from radiation and you can imagine how painful that was.

The other machine was a personal humidifier which kept his throat moist since a lot of head/neck patients have difficulty with dryness. Brian was no exception here. The machine he used was brand new to the U.S. It was being tested in New Zealand and Brian was the second person here to use it. It definitely served it's purpose when it was needed.

Over this past week Brian has begun to eat soft foods again! He was on a liquid diet for about a month -eating only ensures and a special Carnation Instant Breakfast that comes in a can packed full of calories bought only online. He still lost a total of 33 lbs since this whole things started but managed to (barely) escape getting a feeding tube. It was iffy for a few minutes but he worked hard and did it! He is still at a healthy weight though. Lately he has been eating cream of wheat, oatmeal, bean burritos, and soup. The Dr told us the other day that he's doing awesome! There was patient right next to us at the same place in their treatment and haven't even started to think about eating yet.

The best news yet - the dr's also said that after feeling his neck they couldn't feel anything in his lymph nodes! We won't know anything officially until Dec when they will do a PET/CT scan, but everything is looking great and we are confidant he "kicked cancer's ass"!

Treatment has begun

It has been a crazy few weeks. We were gone camping for a while then while I went to family camp with Ethan, Brian went to Sacramento with Craig. We met them in Sac, then Brian and I came home together Monday night (the 19th) - just in time to start treatment Tues. morning.

After the biopsy Brian's surgeon met with the tumor board to discuss the results and treatment options. Based on two factors they decided that surgery would not be the treatment of choice. 1. Because of the location of the primary tumor. It is a small tumor located at the base of his tongue, but it is right in the middle of where the blood supply and nerves feed the tongue so doing surgery in the area would be risky and they don't want to chance causing paralysis. They can perform robotic surgery in that area now that minimizes risk but they would like to see if they better success without it. 2. When the cancer spread to his lymph nodes it actually burst out of the containment of his lymph nodes and is now in his neck. They said because of this that makes him a candidate for chemo/radiation.

The radiation schedule is 5 days a week for 7 weeks. We are completing our first full week today. Fortunately radiation itself only takes a couple minutes so it isn't too bad. Chemo is set up once every 3 weeks. Those days are looonnngg. After radiation we go up to medical oncology and settle in for a 7 hour treatment session. At least it's not 7 hrs everyday!

It's been a little harder on him than we've expected so soon. He's not nauseous but he has been wiped out and had terrible bouts of heartburn and headaches. He is doing well with staying optimistic though. He knows he has to go through it in order to achieve the desired end result. He has met people at City of Hope that encourage him a lot.

Thank you all for your continued support and prayers.

Biopsy

Sorry I didn't write last night. it was a long day and I was exhausted by the time we got settled back at home. We went in for Brian's tonsillectomy/endoscopy/biopsy yesterday morning at City of Hope. His surgery was scheduled at 9:00 but they ended up not taking him into the O.R. until 10:00. It took about 2 hours. Dr. Penn came out and talked to me around noon while Brian was in recovery.

Dr. Penn said he did great in surgery and they, in fact, did not need to remove his tonsils. Once she got inside and got a good look there didn't appear to be any signs of cancer in his tonsil area. They were able to take biopsies and flash freeze them and test them on the spot. In 10 minutes they can tell if the biopsy they just took tests positive or not. It's amazing! She said that they started taking biopsies from the back of his tongue (toward the top of his throat/tonsil area) and it came back negative. They ended up probing deeper and found his primary at the base of his tongue.

We are very happy that we have now identified a primary and can move forward with treatment. We are not sure what this exactly means yet or what kind of treatment is in store. We have an appointment with Dr. Penn on Thursday to go over our options and talk in more detail about the findings once the official pathology report comes back from staining the biopsies.

We have had several doctors and nurses tell us what a great team he has treating him. Dr. Penn seems to be highly esteemed by her colleagues. They have all said that she is the best so we feel very fortunate and that we are in the right place.

Now he is home resting. He is not supposed to talk and only eat soft foods for 5 days - much better than the 2 weeks it would have been had his tonsils been removed. You all know Brian is is ornery and stubborn so he isn't doing a great job keeping quiet! Ana made him soup last night and brought dinner over for the rest of us - a God send.

Thank you all for your prayers and support. Love you all.

June 16

Brian had his work up at COH on Wed. It went VERY well. They said his heart is in great shape. Yay for good news! Everything is set for his surgery on the 25th. I'll update once he is out of surgery and home next Friday.

Baby Steps

Today was the first appointment with City of Hope. It went well. We really feel comfortable there and like his doctor a lot. She looked down his nasal passage (into that airway passage back there) and indicated that some spots look "full". She would like to investigate that further with a regular endoscopy and tonsillectomy. While she's there she wants to get some samples from a few places to biopsy. No real new news yet. The tonsillectomy/biopsy/endoscopy procedure will be on the 25th of this month. Maybe we'll find the primary then and move forward with treatment.

Thank you all for your well wishes, prayers and support.

Johnny B vs. the big C

Hi all-

As most of you know Brian was recently diagnosed with metastatic squamous cell carcinoma. I am starting a blog to keep everyone informed with new information about the cancer and his treatment as it arises. It's far easier than calling or texting everyone. I may still continue to do mass emails so the info may be redundant at times. This blog will look different from the one I did for Sky because that one was designed not only as a place to update everyone but also somewhere to vent my frustrations and feelings about the situation. Brian is nervous about this sounding depressing and we are all staying optimistic and positive, so in that vein this blog will be for informational purposes only and remain positive.

The diagnosis: After finding a lump in his neck Brian went to the doctor for an evaluation. They proceeded with the removal of 2 tumors in his lymph node on the right side. After the biopsy was performed the results came back positive for metastatic squamous cell carcinoma with an unknown primary. We are currently searching for the primary in his body on order to move forward with a treatment plan.

To date: Brian had a PET/CT scan yesterday. The radiology report came back and showed nothing in his system except the metastasis in his lymph nodes we were already aware of. We are very happy to find that it has seemingly not spread all over his body. The down side is we have still not located the primary which will dictate the necessary course of treatment. The next step is to do a triple endoscopy by an ENT. We have an appt set up with an ENT at City of Hope on June 3.

Unfortunately, we do not have any more answers than that at this time. I think it is the waiting that is the most difficult. In the Johnson house we are convinced that this is only an obstacle and will be overcome!

I will try to keep this updated as frequently as I can and as information is unfolded. Thank you all for your support and prayers.