This is part of the story that came out in the Herald and News today here in K Falls. Not everything is right on, but it's pretty close.


Feature of the Day
Beating the odds
Local couple both battling rare health issues
By JILL AHO H&N Staff Writer
When Jenae Bornamann closed her eyes, 18 people were in the operating room. She was awake for almost all of the surgery preparations. The last thing she saw was her doctor with scalpel in hand, ready to cut. It had been a difficult decision for her doctors: how to deliver her baby with the least amount of risk to both mother and child. Diagnosed with Ehlers-Danlos syndrome vascular type IV, an inherited connective tissue disorder, Jenae never meant to get pregnant. And she knew there was a 25 percent chance this pregnancy could kill her. But soon after she gave birth Dec. 5 by Caesarian section to Joshuah, a healthy baby boy, she had other worries.Her husband, Josh, was having trouble standing, sitting or walking without pain.Two weeks later, his legs were tingling and numb and he could barely walk.An MRI on Christmas Eve revealed a mass on his spine. The diagnosis: alveolar soft-part sarcoma, a rare form of cancer that develops in the connective soft tissues.Blessings, hardshipsDuring the last few years, Jenae and Josh Bornamann have experienced both blessings and hardships: they adopted a baby, and Jenae was diagnosed with Ehlers-Danlos syndrome, which killed her mother at age 39. But now — with a newborn baby — they faced Josh’s cancer diagnosis. He was not covered by health insurance. Jenae talked about the struggles one Sunday after church services at Living Faith Fellowship in Klamath Falls. The stress of the last few months had carved dark circles around her eyes. “It totally caught me off guard,” she said of the cancer diagnosis. “I’d set myself up for a crushed disc, even expecting back surgery. I didn’t know how to take care of him. I’d never had to take care of the guy.” Josh was flown Dec. 23 to Bend for surgery on his back. As she drove to Bend, Jenae thought of their last conversation: a fight.“I kept thinking about the last time I’d seen him,” Jenae said. “I’ve got to be there when he gets out of surgery.” Aftermath: After Josh’s emergency surgery at St. Charles Hospital in Bend, he was moved to Oregon Health Science University and then to a rehabilitation center in Beaverton. He is now back in Klamath Falls. The tumor on his spine caused extensive damage; he will struggle to walk again.“Telling him he’s not going to walk again is not an option,” Jenae said. Josh qualified for Medicaid, although the payments and treatments don’t seem to equal out. He has not been covered by health insurance since he and Jenae married. The couple planned to enroll Josh through Jenae’s employer this year, but they can’t do so until open enrollment in June. He may participate in a clinical trial conducted by OHSU, but he hasn’t decided yet. His attitude, Jenae says, is upbeat and faithful.“He’s doing so great. We’ve all got quiet times that are harder than others,” she said. “It’s not in his hands. He’s determined, independent and stubborn.”

I have so much enjoyed having my family at home! Being in my house taking care of my boys...all of them. It is hard with the little ones and a big one, along with unpacking from being away from home for two months. We've been home for over a week and I am STILL unpacking almost done though. It's been a roller coaster lots of ups and downs. Josh has really been feeling the affects of radiation. This past Saturday we had a visit from the EMT's. Josh's heart rate has been up and down and he was just feeling really crummy. Well Uncle Erick solved the problem and came to the conclusion that Josh was just dehydrated. So he has been chugging the H2o. He has also been fight lots of head aches, fatigue, sore throat, just plain ol' don't feel good. So last night he took a pain pill, slept for awhile and then I check his pulse and it was up again...in the 120-130's resting. Then after awhile it went down to 77. So to make a long story short called the boys in blue back over and took him to ER. All test came back normal. Red blood cell count is a little low, which is common from radiation. Conclusion, still dehydrated. So they kept him last night and will see how he is doing tomorrow AM. Josh's doc here talked with the his surgeon in Portland and that doc wants to wait to do Josh's surgery that was scheduled for Friday. It's now scheduled for February 10th. It's a bit of a relief cause he didn't want to go into surgery being so weak and sick. On the other hand we were looking forward to getting it done and over with and starting the next chapter. When you don't feel good it's hard to stay optimistic, but over all I think Josh is doing a pretty darn good job considering everything that's going on. I asked him if he is ready to shave his head cause hes got patches where his hair is falling out from the radiation. He didn't give me a definite answer. :)

Andrew is doing pretty good. He is happy to be home. Getting back in to the swing of things. Trying to develop somewhat of a routine. Yeah right, I know. He is my sunshine and my stinker boy all at the same time. He knows exactly what buttons to push to get me going and knows how to touch my heart. He knows that his birthday is coming next month, I ask him how old are you going to be and he says "good" thinking I asked him how are you, then I rephrase and ask how many hes going to be...and I get 3. Then I ask him what color cake he wants and he says PINK! Every time I get the same answer. Yesterday it was a pink superman cake he wanted. I'll take pictures. :)

Joshuah is growing like a weed. At the doctor yesterday he was 7-15 1/2. His due date is on Thursday so he would have been a nice 8lber. He is feeling the stress that we are experiencing. He likes to change his eating habits...so he really doesn't have a "habit". I had a cold last week and then Andrew got a little bit of it and now Josh and Joshuah are fighting it. Joshuah more then Josh but none of it is fun for either one of them.

Life is going on and we're just letting God carry us through. It's a lot easier that way! Plus he does a good job. :) One day, one hour at a time. You never know what is going to happen or what obstacle is next. No sense to worry when it won't accomplish anything.

Hope this finds you all well and trusting in God to carry you through all the hard times and the not so hard times.

We're going home!

Three more radiation tx to go. This last Friday Josh was moved to a rehab/nursing home in Beaverton. It's nice being out of the hospital but still hard. He is getting more rehab which is the reason he is there. Standing for longer periods of time and take more steps with assistance. Radiation will finish up on Friday and the docs say we can go home to Klamath on Saturday. Hooray! January 30th is the next surgery. It's a BIG one. The three tumors that are growing around his spine start in the connective tissue and then grow around the bone. From what we understand the tumors are eating away at the vertebra, therefore the doctor is going to put pins in Josh's spine starting around T9 all the way down. That is the first part of the surgery. The second part of the surgery consists of attempting to remove as much of the three tumors as they can. It's expected to be a 12-14hr surgery, then 1-3 days in ICU on a breathing machine. About 7-10 days total in the hospital. After that we're not sure what is going to happen. So surgery on the 30th, he'll be admitted back to OHSU on the 28th (the day after his birthday) for preparation. Josh's legs are getting stronger and stronger yet he is getting more tired from the radiation. It's a vicious circle. God is defiantly is control of our lives which is exactly how we want it! :)
Joshuah had his first doctors appt on Monday. He weighed 6-15 1/2 and 19 1/2in long. He gained a pound in a week! Needless to say he doesn't have to be on the extra calorie formula for much longer. He is starting to be awake more during the day. Sleeping 4-5hrs at night. A much nicer change from Andrew's baby days. Brother Andrew LOVES to help. He wants to be right in the middle of everything, always wants to give him hugs and touch his head. We've really worked on not touching his face but his head... Joshuah is very tolerant of his big brothers lovin. It's sweet! I love my boys!
This past weekend I got to go home to Klamath for a few days with my sister and the boys. It felt soooo good to be in my own home and sleep in my own bed after two months. Andrew was also very happy to be home and Joshuah got to sleep in his new room for the first time. I had a great time visiting my friends from the clinic and getting to spend time with Uncle Erick and Auntie Sharla. Time went too fast and I am anxious to return and enjoy the time we will have at home with each other again, along with our new addition.
We are thankful for all your thoughts and prayers and pray that you too will be blessed with God's strength and peace when resting in him.

He is holding his legs up in the air.....Hooray!



Josh just got done with his second radiation appt. Every week day for 10 treatments. 2 down 8 to go. Things are moving right along. It still feels like we are waiting for something but not exactly sure what. It will probably feel that way until we are HOME! Which could be in a couple weeks. Maybe. There is a trial going on here at OHSU for treatment of ASPS (alveolar soft part sarcoma) if Josh decides he is going to participate then he has to wait three weeks between his last radiation tx and the start of the trial chemo. However we are waiting to see if he will be able to get into a rehab center to help get more strength in his legs. That may delay the trip home. Josh is still moving his legs more and more everyday. This week he started standing up in the hall way holding onto the railing. Just for 45 seconds or so but it's progress. I got to see him stand for the first time yesterday. He also held onto the rail with his right hand only and with help from the physical therapist he took four steps. It was very moving. Hard to watch but encouraging. He has up and down moments. I can't imagine how he feels not being able to just get up and walk across the room.

Joshuah is doing really well. Just at about 6lbs. Eating well and growing like a weed. He was released from the hospital on Sunday. It is very nice to have him with me. It feels weird having him around and not having to go back and forth to the hospital. I will admit it's nice not having to go back to that hospital all the time, BUT I do miss the staff. It felt like home longer then it should have. It still somewhat feels like home.

Andrew is still dealing with things like a champ. He enjoys playing with the girls (my sisters) and getting in the hot tub with papa. It is my little water baby. Swimming lessons when we get home! He has NO fear of the water. It was cute the other night, he was watching me feed Joshuah he picked up Joshuah's hand and said "look mom we're shaking hands. Good to

Another rainy day in Portland...

The pathology test came back and showed Josh's cancer to be a Alveolar soft part sarcoma instead of the rhabdomyosarcoma. Meaning the tumors are growing from the muscle onto and around the bone. From the research I've done it's a connective tissue cancer. Go figure huh.

The other day the oncologist said was a slow instead of fast growing sarcoma/cancer. But then yesterday Josh said (I wasn't here) the doctor told them they have suspicion that it is a faster growing type, so we just keep going back and forth. Alveolar...is a rare type of cancer and the specialist are networking and trying to figure out the best treatment for Josh. On Tuesday he starts radiation on the two spots on his spine, the spot on his jaw and the MRI showed one on his head (forehead area I think) they want to zap that one too from the sounds of it. "Regular" chemo is no longer and option. The docs say it doesn't help this particular type. So they are going to try some experimental treatments and hope for the best.

Josh's leg movement is getting better and better each day. Physical therapy is working with him daily. They would like to get him moved to a physical therapy rehab center, but insurance doesn't want to pay for him to be at OHSU for radiation and at a rehab center for PT at the same time. So that is going to stretch things out longer.

Andrew is still handling everything pretty well. He has gotten to the point of expecting me to leave I think. Yesterday I asked him to come downstairs and give me a love before I left and he was like okay bye mom see you in a couple days...

Joshuah is doing very well as always. Getting big. Yesterday his weight was 5lbs 10 1/2oz. Growing like a weed. Still not sure when he is going to be released, probably this weekend or the beginning of the week.

I am very anxious for as least part of my family to be together. Missing my home and a routine but it will soon get better. God is defiantly the one carrying me through this.

Hope you all had a blessed Christmas and have a happy new year!