No change with Josh much lately. He has been sleeping better and I think overall feeling better since we switched him to a raw vegan diet. It is crazy this vegan thing but I kinda like it. A LOT of preparation. There is ALWAYS something going on in the kitchen. Josh has been putting more and more weight on his legs. Doing more squat pivot instead of using the transfer board. The radiation he just got done with hasn't affected him like the last time. No real visible change yet in the tumors on his head.
On Friday I went to the ER again! My right hands went numb, went away then my vision in my right eye got blurry, that went away. Then I wasn't able to talk very well. Couldn't get my words out. So to he hospital. Surly that doc thought it was a stroke but the head CT, chest x-ray, neck CT and spinal tap all came back normal! Once again no bleeding on the brain. As far as we can tell anyway. So I was either to drudged to remember or I wasn't told, but I guess after you have a spinal tap you are suppose to be down for like 12 hours. Well I wasn't. Got home from the hospital 5:30 yesterday morning. Woke at about 9 with a worse head ache. Stayed down most of the day then was able to get up and move about and have some dinner. HA came back and my lower back has been really sore so I took some pain pills and went to bed. Thankfully Jennifer was here, I was able to get some rest, but when I got up this am I still had a bad HA the worst I've ever had. SOOOO back to the ER. I love IV pain meds. Instant gratification! The doc said I have a HA from the spinal tap. Gave me the meds and some fluids and sent me home to bed for a few days. Crazy I tell ya.
My dad and Marge, the girls, Jenn and Gregory and cousin Tamara and her hubby Andrew all came down for Easter. Uncle Erick and Aunt Sharla along with Josh' parents are all here. We celebrated Andrew's birthday last night. He finally got his pink superman cake. Actually it was pink cake with white frosting and big red A. It was cute. he had a great time.
Okay so my pain meds are finally starting to work so it's off to dream land I go. I'll try to get something more posted again soon.

Happy Birthday Alisha!

What a day! Geesh, what a WEEK! First off sorry once again for the delay in info. Once again we were at a hospital that didn't allow me to connect to the Internet. Only access I had was the Safeway parking lot. However I could have gone in, but I was always in a rush to get back to Josh when I WAS at Safeway. So. I've truly felt like this week was one of my "less" stress weeks. That was until I got a migraine on our way over to Medford on Monday. Lasted till Tuesday then hit me ER HARD on Wednesday. Spent the afternoon and evening in the ER. It was different then my usual migraines and it had me very worried. Blood work and CT came back normal. Praise Jesus no bleeding on/in the brain! I received some IV fluids and a dose of Compazine and Benadryl together. Help with the pain as SOON as it entered the blood stream. Well it just made me not care about the pain that is. However. I don't know if it was the two of the meds together or just the Benadryl but I was oh so very sick that night and the next morning. Just wanted to crawl out of my skin. It was very weird and very uncomfortable! I've had Compazine before and didn't react that way. I usually like the way I feel with a dose of pain relievers IV. Helps me SLEEP! Anyways, my point. Okay well I don't remember...
Radiation went well for the most part. The first treatment on Monday took a very long time. After that it was in and out within the hour. On Thursday Josh's left arm/shoulder started hurting him really bad! Probably from all of the pressure reliefs he had to do while waiting with me in the ER. :( He didn't stay all evening but he was with me longer then he should have been. So his shoulder was pretty sore. It took a lot of tricky movements to get him from his bed to wheelchair to gurney to table...and then back. Today, well yesterday went a lot smoother. His shoulder is/was still really sore but the techs moved him very well. On Wednesday we met with Dr. Kohler the oncologist in Medford. Very nice lady. She recommended some of the same chemo that the docs did in Portland. Still going to check on a particular one called Sutent. We are still trying to get a hold of the docs in Boston to see if we can get that worked out. On Thursday Josh did an interview with a Grants Pass radio station. Tear. It went really well and we are hoping that it will bring in some funds to help with the Boston trip shall it come to that. Today Josh had a full body CT to check in on our little friends that have worn out their welcome. They are just being so very rude and won't LEAVE! Gosh darn it! My prayer is that this scan will show that some of these tumors have got the picture and are starting to disappear!
I am sure there is something I am forgetting to tell you. When I remember I'll post it. :)
Because of some unforeseen circumstances today my plans to have dinner with some of my relatives (including my papa and grammy who have yet to meet baby Joshuah) did not happen this evening. Josh felt really bad and apologized, thinking it was his fault... it wasn't but, I thought about it for awhile and told him... that even though today didn't go like I had wanted it to and there are many stressful days and days that we could just live without, I am thankful for what I do have and would rather have 100 crazy days that don't go as planned with him then to have just 1 good day. And I really do feel that way. It's a crazy life we live but it's our life and God has BIG plans!


Congrats Tom and Julie on the little blessing! I can't wait to meet him!!!!

Just a quick note.
We all went to church today for the first time as a family of 4! And we were there early! Pat on my back, he he. :) It was so very nice. Anyway. I just wanted to say thank you to all of you! For all of the thoughts, prayers and words of encouragement. It means a lot to us! Even though it was hard for Josh to get up (out of bed) earlier then normal and exhausting to transfer in and out of the car. It made his day, getting out of our house and spending time in God's house. Josh stayed up in his chair all day! Just at 830 he got back in bed. It was great to see him up and "functioning" like himself again. However he barely got laid down and he was asleep! But today was just a blessing and I wanted to say Thank YOU!

Wow, it's been a long week. Sorry for the delay of info. We went to Medford on Thursday and met with the radiologist. Josh starts treatment on Monday. It will only be five treatments. Praise Jesus! So we'll go over on Monday and come home Friday. We'll be staying in Medford, within walking distance to the hospital. So we'll be able to walk/wheel over for treatment providing it's not raining. That will make it easier for Josh not having to transfer in and out of the car. On Wednesday we meet with the oncologist to discuss chemo. The boys are going with us to Medford. Andrew will probably stay with Josh's parents part of the time. They are also going over for the week. (I think). Josh has been feeling pretty tough. Good days and bad. Gets tired real quick.

Funny,
We bought a new T.V. for "Josh's" room while in Medford. That night the boys stayed with Shelly, the next day when she brought them home Andrew was sleeping so she laid him on the couch. He woke, happy (unusual) talking, playing... walks into the other room headed for the potty and stops dead his tracks. "MOM I didn't want THAT T.V. I wanted you to get me a PINK one not black!" And he went on. Nothing else. That was it. But he wanted to make sure I knew he wanted a pink T.V. He didn't even know we were going to get a t.v. All I could think of was hello kitty. Shhhh don't tell him. I lied and told him they don't make pink T.V.s.
Another. Last night he went to bed in his bed, but at some point I awoke to him getting into my bed. Anyway. About 5am I had gotten up to help Josh. (Not Joshuah, he has been sleeping if not all most of the nigh) When I went back to bed Andrew sat strait up and said "mom, I have your phone." which he did, (that's my alarm) then he laid back down asked me to go find his flashlight so he could "put it on the ceiling". "Andrew go to sleep!" Oooookkkkkkkkkk Mom! :) It was cute. That boy can make me soooo very angry but even at 5am he can make me laugh!

I am sitting here with Joshuah on my lap, Andrew in the tub and Josh calm and sleeping. For now. About an hour ago I was screaming because two of the guys were pooping and the other screaming...won't tell you who was doing what, cause right now any one of them could be doing either! Oh the joys of being human. I am still so happy to be home and to have my kids home with me. Jennifer brought them home last night. She stayed for today and went home this evening. I am so blessed to have her. Jen is such a big help when she is here. We are so much alike it's like having two of me. Which I always need!

Josh has had a rough day. Not feeling that great. Lots of pain and overall discomfort. It looks like we are going to Medford on Thursday for a consultation with the radiologist, get all the details about the next sequence of radiation. We really are not excited about it. Depending on how many treatments it is going to take we will probably be staying in Medford. Not sure yet how it's all going to work out. My point, I don't want to be away from home anymore. But we gotta do what we gotta do. On the first I believe, we meet with an oncologist over in Medford to discuss chemo options. We are still waiting to hear back from the Boston trial. Not sure how chemo is all going to come together either. Through all of Josh's discomforts and troubles, today he led and old friend to Christ. She will turn 90 this year. There are reasons we have trials in our life. There are reasons we are going through what we are. Every now and then something like this happens and we see one of those reasons. We are very thankful for what we DO have and are thankful for each day that God gives us together, to be with our children and be a witness of God's grace and love. All honor and glory to be given to God!

We FINALLY made it home! I am so very thankful for that. It has been a long week! The chest x-ray that Josh had done Thursday night checking for pneumonia came back normal. The x-ray done of his abd. showed the tumor that is in his left lower quadrant abdominal area. It is pushing on his intestines causing the feeling of a blockage. However no stool blockage or obstruction from the tumor. Yet. One doctor suggested a colostomy now as a preventative measure instead of waiting until the obstruction happens and it has to be done in a emergency situation. The surgeon suggested not doing it until we have to. We agreed! So keeping up with strong bowel care is what we're going to do. This tumor that is in the abd is about 4in by 5in. Large. It has grown a good amount over the last 6wks or so. Because of the size it is now and because the intestines are now involved the doctor that talked to us about removing it back then now isn't going to do it. He said that there is to many other cancer spots that will become a bigger problem later and doing this surgery isn't a "priority". But then a different surgeon basically said that because of where it's at and because of the important nerves and arteries that are a part of this tumor, to remove it would kill Josh. There would just be too much bleeding. SO, not doing that surgery at this point. It's frustrating because 6wks ago when the one doctor was talking about removing it, Josh was having bowel problems and I was asking about an x-ray just to make sure he didn't have a blockage. And every time I've asked since then the doctors have just said no reason to because his stomach was making noise and if there were a blockage or obstruction that wouldn't be happening. WELL! Had they done the darn x-ray then and realized that just maybe if they didn't remove this tumor before it got any bigger we wouldn't be in this situation!! But that didn't happen so here we are. Wait and see. At this point we don't have a definite plan. We are going to meet with an oncologist in Medford around the first to discuss radiation of the tumors on the top of his head, the side of his head and his right femur. The radiologist said that visually the radiation worked for the other spots on his head, and he's right. From the "looks" of it it did work. You can't see them anymore. But we'll get another CT or MRI just to make sure. There is also talk about starting chemo. Not sure how that is going to play out but the doctors at OHSU think that would be a good idea. Try to find something that is going to knock this all out since surgery really isn't much of an option anymore. Things are changing faster then we'd like at this point. A month ago they were giving him 1-5 yrs and now today the surgeon said months when Josh asked him about a prognosis. However does that mean 2 months or 36??? I like 36 better :) I am not ready for all of this to be happening so fast. But we can never be totally prepared can we? We are praying for restoration on earth. My trust is in God. I know he has a plan and he knows what the future holds. We may not know right now the reason for these circumstance and we may never know, but that is okay because God is in control!

Scroll to the bottom of the blog for pictures!

Another day. Well we are probably going home tomorrow. However Josh is feeling pretty sick. His oxygen is still low and his temp is still slightly elevated. If he doesn't feel like he is strong enough to transfer into the car and make it home tomorrow then we'll just have to put it off another day. But right now the plan for tomorrow is home. He is going to have and x-ray done this evening to check for pneumonia and one to check his abdomen for a blockage or reason for his discomfort. We know he has a tumor in his abd. area but not sure if that is what is causing the bowel problems. Until next time...

So we are looking into this chemo trial that is going on in Boston. As we are sitting here discussing the details we've come to realize that if we go it will be difficult for just the four of us to go. And wouldn't want to leave my kids at home. I am wondering if any of you have friends of family in the area they we could get in contact with if needed for some help. Not sure how or if this is all going to play out but we're just looking at options at this point.

We are waiting for the radiation team to come is and discuss further radiation. Dr. Hayden (orthopedic surgeon) said that there wasn't a tumor in his right thigh area that it's in the femur itself. So I am confused. But I guess he thinks doing radiation on the bone will help slow the cancer down in that area so the bone can heal up a little bit. That is if the radiation helped of course. I asked the doc this morning what he was thinking as far as discharge, what the criteria was for Josh to be able to leave...he said that he was hoping to have the meeting concerning Josh with the other doctors today instead of next week when we are suppose to come back up for an appt. So we're in limbo until tomorrow AM to see if we have to come back next week. It's just a wait and see thing I guess. I hate it but if we don't have to come back up next week that would be fantastic. Josh isn't to keen on the idea of more radiation. Will let you know what those docs have to say this afternoon.

Not much changed today. Josh is feeling pretty good considering. He sat up on the side of the bed. Progress. Still hope we'll be headed home come Thursday or Friday. However it's bittersweet because next week Josh has an appt up here and going home just to turn around to come back is difficult. The traveling is really hard on Josh. There is talk about more radiation. It looks as though it helped in the areas on his face but a CT will be done to verify. Not sure what is going to happen. At one point Josh said he really isn't wanting to do more radiation because it made him so sick last time. It's about the quality of life not the quantity I think. Our God is big and continues to carry us through day after day. We give him praise and glory for the time that we do have. I am thankful our lives are in his hands and that I don't have control over it.

Surgery went well. He came to his room awake this time. Not really that groggy. Kinda grouchy...go figure. :) I havn't been able to talk with the doctor but will in the AM. Will keep you posted.

AGH!! Finally Josh is in surgery! He has been fasting since 12:00 last night not knowing when surgery was going to be today. At around 2:30 Dr. Hayden FINALLY came in and we got SOME questions answered. From the sounds of it this is a NEW tumor and the cancer is already in his blood system.... This surgery is to stabilize his right femur where the tumor is weakening the bone. The doc said that the tumor is throughout the femur and to remove the whole tumor would mean taking out the entire femur and replacing it with a titanium rod. Which they are putting the rod down the center of the femur but not removing the bone. He said he would probably remove about 3/4 of the tumor. They came and took Josh to the "holding" area around 5:30. At 7:30 they asked if surgery could be done in the AM cause the case the the doc was currently working on was taking longer then expected and then there was and ER case next...fine whatever. Then a nurse comes back and says well he has clinic in the AM can he do it in the evening? Josh didn't like the idea of going hours and hours without eating and then the possibility of it being moved again...so she called the doc and comes back and says they ARE going to do it tonight. SO I just got off the phone with a nurse in the OR and they started at about 10:00. It sounds like this is going to be a pretty quick surgery and a few days in the hospital. Fingers crossed! Please keep him in your prayers. Doctor Hayden basically said that the cancer is being very aggressive, growing faster then they expected and in so many words said that they are not going to be able to "keep up" with just surgery. More radiation? Chemo? Not sure what is going to be the solution. I don't think the docs even know. It's hard because we get told one thing and then it changes. There is going to be a lot going on over the next few days with doctors I hope! So stay tuned for more updates. Lots of loves and thanks for all the encouraging thoughts and prayers!

Friday started off to be a good day. It was sunny and warm in Medford. Felt like a crisp summer morning out on the lake...
Got Josh all packed and the car loaded to come home. THEN we got a call from a PA at OHSU. She works with Dr. Hayden Josh's internist. Dr. Hayden and Dr. Ching finally got theMRI films that were done last week and after hours of debate decided that they want Josh in surgery on MONDAY!!! From what the PA told me there is a mass/tumor pressing against the neck of the femur which we knew but if the bone does fracture and the tumor breaks, tears, moves whatever it will spread the cancer into the rest of his body. This tumor is in his right hip. I guess a different one then the one that we've known about. Which makes me question the fact that this is a slow growing cancer. I think NOT! How frustrating! We got home last night (Friday) and will be headed up to Portland tomorrow for surgery on Monday. Keep us in your prayers. We don't have much info on this surgery since they called Friday afternoon-going into the weekend we don't have any communication with the docs....

SO. Not sure how but we were not given the correct information about the tumor on Josh's head. I love doctors and they all have a gift from God to care for people in whatever way they do BUT the communication between some are not all that great! What would we do without them? Anyway...the tumor at this point has not gone through the bone and is NOT eating at the brain tissue. AMEN!

We are going home tomorrow (Friday). Hooray! Joshuah is doing MUCH better tonight will be released tomorrow. I am sooo very thankful for the care he has gotten here in Medford. The nursing staff is wonderful and I will miss them. Josh too is ready to go home. Time for some R&R and time to develop a routine again...until we go back to Portland that is. Oh and that has changed also. At the weekly meeting at OHSU Josh's doctors decided that they all wanted to meet with him at the same time (I think that is how it went) and therefore rescheduled his appointment for the 25th. So we get a little bit more time at home. Hooray for that!

Well. Joshuah is still in the hospital trying to get over this nasty RSV virus. Overall he is doing pretty well but he is having a hard time keeping his oxygen level up. He does good while he is awake, goes up and down but then when he falls asleep it drops and doesn't come back up. :( He still has a yucky cough, which will last a long while. He hasn't been eating as well...of course. So I've been giving him some pedialyte so he doesn't get dehydrated. The doctor said today that he will probably release Joshuah tomorrow if he doesn't seem to be having any difficulties breathing. He sad that we could watch the monitor for days and nothing change. As of now he hasn't had any "difficulties" since we've been here, with the exception of being congested and coughing up a lot of mucous... The doctor said that Joshuah's ears look a little pink and so he started him on a antibiotic. Plus his lungs are still crackly so the abx will help if it starts to turn into pneumonia. Crazy I tell ya! But he has been VERY smiley today. :)

To make a long story short OHSU did a scan of the lump that Josh noticed on the top of his head a couple months ago that has just been getting bigger. The test showed that the tumor has gone through the bone and is eating the brain tissue. That is all the info we have a this time. We don't know if that tumor has just grown or if it's spread and there are more in the brain or what. Josh also had a MRI done here in Medford last week and it showed that the tumor in his pelvic area (not sure if this is a new one or the same one) is putting pressure on the neck of the femur and if he puts too much weight on that area then there is a high risk of fracture. SO until Josh's doctor here talks with Dr. Ching his doctor up in Portland he isn't to put ANY weight on his hip. He has an appt in Portland next Tuesday to meet with the oncologist and I think the surgeon. We'll see what happens.

When it rains it pours... This actually feels like a hurricane.

Josh is doing pretty good. Nausea comes often. His upper body strength is getting a lot better along with his leg movement. Still working on transfers. No standing yet, but that will come with time. I finally got over my cold and the boys and I came over to Medford last Saturday.

Last Thursday Joshuah started with a yucky nose. Didn't get much worse then that. The boys spent the night with Roy and Shelly Saturday night and then on Monday Joshuah stayed with cousin Amy. Tuesday he started with a NASTY cough, fever and breathing difficulties. :( So I went and picked him up that night and took him to the ER at the hospital that Josh is at. I was thinking RSV but the test came back negative. He spent the night with me at the hospital. Took him to his follow up appt with the pediatrician here and he said "yes he has RSV, I am not even going to test him again." So Joshuah got a breathing tx in the office and they sent us "home" with a nebulizer and rx for Albuterol. We did treatments every 6hrs to help with the symptoms. He had a hard time breathing and eating through the night because of his cough and from being so congested. On Thursday he seemed to be doing worse so I asked Josh's nurse to hook Joshuah up to the O2 machine....79% Geesh! Back to ER. They game him O2 and started a IV and did another RSV test. Again it was negative. He was admitted to the pediatric unit at a different hospital then Josh. Today is day 3. His O2 level is still low without the O2 stuffed up him nose. Today they took out his IV since he is having more wet diapers and eating better. They also took him of the heart monitor. All he has now is his O2 stuff. :) He is fussy-to be expected. Not sure when he gets to go home. Maybe tomorrow or Monday. Oh the RSV test they did here came back positive!

Soooo...on that note. Andrew is being content as ever. He went home to Klamath with Roy and Shelly for a few days and is now in Eugene with papa and nana. He is a silly little boy. I was talking to him this am on the phone and he was going on and on about lots of stuff. I understood most but not all of it. He made sure I knew that he had a blue sucker in his pocket for later. :)

Hooray for the cold and flu season! NOT! It's good for business but it bites being the patient! Needless to say I got the crud that is going around...mostly sinus cong/pressure blah blah blah. It's taken almost a week and I am FINALLY starting to feel somewhat normal again! However now Joshuah has the yucks. Andrew just has a runny nose and has passed the V&D bug. I would much rather be sick myself instead of my kids. Because we have all had the germs we have yet to make it to Medford to see daddy. :( Hopefully we will be able to head over by Saturday. As soon as the fevers subside.

I have not been able to talk with Josh much. They are keeping him busy. From what I can tell his pain is mostly under control but he is still pretty sleeping. Trying to find that happy medium is a PAIN! He is getting lots of therapy, which is what we want. The care at Providence seems to be really good. It sounds like they are on top of things and get stuff done now instead of later. Haven't heard exactly what the plans are. When we were in Portland they were saying two weeks in rehab so who knows what has changed.

Andrew has been a crazy monkey lately. He is becoming more and more independent as the days go on. I wasn't moving fast enough the other night so he go himself dinner out of the fridge and helped himself. Cold lasagna...yummy. This morning I wasn't ready to get up when he was so I asked him if he wanted me to put cartoons on so I could sleep a lil longer...well he turned the T.V. on for ME and went and got himself dressed and went potty. Then I heard him go down the stairs and messing with stuff in the kitchen. That was my cue to get up and get breakfast going. However he would have done it himself...he was pouring choc teddy grahams into a baggie when I came down the stairs. Cute. He has had great fun spending time with Auntie Sharla. Everyday he asks me where "Shala" is and if he can go to "wogers" (Rogers) house. Very cute. He and Joshuah spent the night over with Uncle Erick and Auntie Sharla the other night so I could get a good nights sleep. And I DID! Thank you Moika!!!

Joshy is getting big. Of course. :) I wouldn't expect anything less. He has been making non crying sounds over the last few days but really starting cooing yesterday. Oh so sweet! No smiles yet. But he is working on it. He is awake more during the day, eating nearly 4oz, holding his head up pretty darn well, and looking more and more like his daddy every day.

Pic #1 Andrew was "doing the dishes"

Pic #2 I LOVE sleeping 3 year olds!

Monday Josh will be moved to Providence rehab center in Medford. He is getting stronger everyday, but it is still difficult to stay determined when on all of the pain pills. But each day is a new one. He has been able to get up and into his wheelchair several times this week. Got a shower yesterday but then sounded really tired and uncomfortable when I talked to him last night. The boys and I came home yesterday to regroup. Both of them had their regular doctors appts. yesterday. Andrew is STILL 30lbs and 35in. Joshuah is 10-0.5lbs and 21in. THANKFULLY Andrew is current on his vaccines. Joshuah however had to start his journey and got 5. I am a horrible mother and didn't make sure I had Tylenol on hand so he was pretty fussy last night BUT he slept ALL night!!! That was nice....kinda scary, I woke up often. Maybe it's a sign of things to come.

Riding in the car with a 3yo is much more exciting then anyone leads you to believe. I never know what is going to happen the next time we get in the car for a 2-3hr drive...
We left Eugene yesterday am around 930. We were not even to Oakridge yet (30mins from town) and my very verbal Andrew got silent. I didn't think anything of it, he was eating a fruit bar. Then; "mom, I need a wipe" "why Andrew what happen?" "my fruit bar got on my car seat." Just as I am looking back at him his fruit did indeed got on his car seat....AFTER it had been chewed up and digested! ewwwww.....gross! OK no prob. So we pulled over changed clothes, cleaned up the seat. I had to remove the car seat straps and buckle because they were saturated! So he got to ride illegally with the regular seat belt. He thought he was hot stuff, I on the other hand thought for sure I was going to get pulled over for one reason or another and then it would be all over. But I didn't! So then we are working out way up the mountain and again!!! This time it was more corn nuts and m&m's that he had sneaked out of the front seat while I was cleaning up his first mess! So again, pull over change clothes, clean the car seat blah blah blah. Thank goodness he fell asleep after that! He has been fine ever since and kept his dinner down last night. He slept with me last night, woke at one point gagging. I did what any good mother would do and got him the garbage can and a towel...just in case and went back to sleep :) I didn't wake up with puke in my face so that's a positive. I am hoping he was just getting car sick but I feel pretty lousy today. However mine is all sinus and achy body. So who knows. Lucky for Joshuah he slept through all of our lovely events.

Holy moly. I love it when government offices like to close at 3:58 instead 4pm and why not close at 5! Needless to say I was able to get the birth certificates for the boys but not the SS cards. Hopefully tomorrow. Anyway it looks like we're going to Medford for rehab. It will be interesting that's for sure. Not sure when we will go but within the next few days I am sure.

So I woke up this morning with a head ache, body aches and an upset tummy. Rolled over and went back to sleep and finally got out of bed and showered at noon. All the while the doctors are coming into the room discussing things with Josh and I am SLEEPING. UGH! The little bit of extra sleep was nice. That is probably why I feel so crummy. Lack of. At least the sun in shining here in Portland today. Hooray for that!

Dr. Hayden a Oncology tumor specialist (whatever that means) came in this morning (while I slept) and discussed further surgeries with Josh and Shelly. From the sounds of it the largest tumor Josh has is wrapped around his sciatic nerve in his left hip. The explains a LOT! Josh has been having this horrible hip/sciatic pain for yeeeeeaaaaaaaaarrrrs. Which leads me to the conclusion that this is a slow growing cancer. I think Dr. Hayden did say that this morning. Anyway so with this particular tumor Dr. Hayden would go into the area and remove the whole muscle that the tumor is attached to, doing no damage to the sciatic nerve. About 3-4 days in the hospital for that surgery and then some time in rehab. He talked about the tumors in is lungs. Said there is a thoracic surgeon who can remove the tumors in the lungs and the ones around his rib area. But not a lot of details on that surgery. SO. That is what we know at this point. Still unsure of where Josh wants to do rehab at this point.

Pray for me this afternoon. I am headed out to find the Vital Statistic office and the Social Security office to obtain a birth certificate and SS card for my boys. You'd think I would have had all of it. It's something you don't think about until you need it! But hey at least I'll be enjoying the sunshine!

"Mom, wheres my happy birthday cake?" That was Andrew's response to me after I told him happy birthday today. It was cute. Made me feel bad, but cute. I told him I am going to make him a cake when we got home...a pink one. :) He was satisfied with that and decided that Josh's left over red jello custard dessert was his happy birthday cake. He is a character. I probably shouldn't tell this but on our way up to Portland yesterday we were between stops and Andrew says "MOMMY! my poop is coming out." That's his new thing, wait till it's happening to tell me. Anyway...so what else can I do besides pull over on the side of I-5 and he took care of business...no kidding less then 10mins down the road again "MOMMY! this time with tears, "MY POOP IS COMING OUT!" Then... silence. Oh man Andrew...really? Finally we got to a potty. I didn't realize the mess went through his pants, I had only brought in extra undies. "Mom where's my pants" well Andrew they are in the car I'll get them in a min. He wouldn't walk out to the car so here I am Joshuah in his car seat in one hand and Andrew in his sweatshirt, undies and his tennis shoes in the other hand. Wish I had a camera. Thanks to the nice lady who offered to carry Joshuah to the car. I was laughing the whole time. I love the mind of a 3yo. ANYWAY!

Josh is doing a little bit better today. Still very uncomfortable but better. He sat on the side of the bed again today and got in his wheelchair for a few hours. Progress! Very tired though. He had an x-ray and a EKG done today. His side/chest/rib pain hasn't gone away yet and now it's on the other side. Of course we haven't heard what the results are yet. Surprise. Providing on how Josh is doing tomorrow and on to Thursday he may be released. Talking about Providence rehab center in Portland or Medford maybe rehab in Klamath, but I am thinking not. Rehab at Providence consist of about 3hrs of rehab a day and two weeks there. Rehab in Klamath is 1hr a day and about four weeks. But it's up to Josh so we'll know more tomorrow on what he wants to do.

It's been almost a week since surgery. I can't believe how fast time goes. Josh is hanging in there, just like the rest of us. He had been experiencing some excruciating right side rib pain. a 15 on a 0-10 pain scale. "It's the worst" He has been on the morphine pills and the neurontin but it just seems to take the edge off. The doc now says that they had to remove a part of a rib and that is where the pain is coming from. Why didn't they tell us this before?? Who knows. It's nice to have a reason but I would still like to have an x-ray done to show there isn't anything else going on.....like a pneumothorax (collapsed lung) for instance...been there done that. We'll see what happens tomorrow. I drove down to Eugene yesterday to see the boys. I've missed them TONS. And it is soooooo nice to be with them. I am headed back to Portland tomorrow with Joshuah and maybe Andrew. Andrew's birthday is on Tuesday and Josh and I wanted to at least see him on that special day. :) Three years old. I can't believe it! Where did my baby go? Joshuah is doing well. Started to eat more at a time and sleep longer at night. Except when he has a tummy ache which seems to be happening a lot lately. I think we'll be changing his formula.
Please keep praying for us. For Josh's pain to get under control, for his strength to come back quickly and for his emotions to stay positive. I appreciate all the thoughts, prayers and words of encouragement. Thank you sooo much. Please feel free to contact me if you have questions and I would love to hear from you!
Lokua02@yahoo.com

These are they days of our lives...

Josh is ready to be moved out of ICU but we are still waiting for a bed/room on another floor. Last night he was taken off of the monitors. Still on O2 but that's it. This morning one of the lines was taken out of his neck and 2 of the drains were removed from his incision site. He had 4 drains on his back at the site. I haven't seen the incision itself but the bandage goes from about the top of his shoulder line all the way down to his tailbone. Pretty cool if you ask me :) Yesterday PT and OT came in and made Josh sit up on the side of the bed. He did really great! A little bit dizzy and his strength wasn't that great of course...to be expected. He is using the morphine less and less so I hope that means that with the Tylenol and the Neurontin his pain is getting under control. We are moving right along and God is carrying us through. Thanks for all of the thoughts, prayers and encouragement!

Josh is still in ICU. Doing as well as could be expected. He's very uncomfortable. He is on Morphine PCA for pain currently. If he isn't frustrated cause of the pain then it's because he can't wake up. It's a never ended circle I tell ya. He has yet to answer me on if he would rather be in pain or be sleepy....
He has had the most pain in his sternum area- from all the muscles stretching and tissue being pulled and then of course his back hurts. I have NO idea why...geesh. :) Yesterday it was hurting him really bad to be moved/rolled/shifted. Today he said it didn't hurt as much when they turned him. That's a positive! The "pain management" team (one guy) came in yesterday and did an assessment. Because the pain that Josh is experiencing is mostly nerve pain they are going to try him on neurontin (for seizures) he doesn't have seizures but it helps a lot of people especially right out of surgery with pain, because of all of the disruption that has been done to the nerves during the procedure. We'll see. My hope is that his pain will get under control and he can be on something that doesn't make him so sleepy. Even though rest is good for him he is still going to need to get up and get his muscles working, per Dr. Ching. The talk yesterday was that today Josh would be moved to a different floor. Probably back up to orthopedics where he was before surgery.
That's the story for now. Please keep us/Josh in your prayers. We've got a long road ahead of us. Pray for strength to come back into Josh's legs quickly and of course for quick healing. He is already ahead of the game with getting off the ventilator yesterday. AMEN! Also please keep Andrew and Joshuah in you prayers. There are still in Eugene with auntie and papa doing pretty good, but it's has to be hard on them...

I heard this song for the first time about 7mos ago. In my car on my way to work shortly after we found out I was pregnant. Bawled my eyes out! It has been my "theme" song if you will ever since then. It is so perfect for my life. It feels like chaos but it IS something heavenly!

It’s time for healing, time to move on,
it’s time to fix what’s been broken too long
Time to make right what has been wrong;
it’s time to find my way to where I belong

Chorus:
There’s a wave that’s crashing over me, and all I can do
is surrender
Whatever You’re doing inside of me
It feels like chaos, but somehow there’s peace
And it’s hard to surrender to what I can’t see, but I’m
giving in to something heavenly

Time for a milestone, time to begin again,
re-evaluate who I really am
Am I doing everything to follow Your will or just climbing
aimlessly over these hills?
So show me what it is You want from me
I give everything – I surrender

Time to face up, clean this old house
Time to breathe in and let everything out that I’ve
wanted to say for so many years
Time to release all my held back tears

Whatever You’re doing inside of me
It feels like chaos, but I believe …
You’re up to something bigger than me
Larger than life, something heavenly

Whatever You’re doing inside of me
It feels like chaos, but now I can see
This is something bigger than me Larger than life
Something heavenly, something heavenly

Time to face up, clean this old house
Time to breathe in and let everything out

Sanctus Real/what ever your doing

I don't know how people live without God in their lives. He is soooo AWESOME!
Dr. Ching. Josh's surgeon came to talk to us at about 945 last night. Surgery went very well. Josh lost 6L of blood, more then what they would have liked but they were expecting blood loss, the anesthesiologist stayed on top of it. Dr. Ching was able to do most everything that he wanted, for the most part. He put pins and rods down his spine from T4 I believe all the way down to hook to his pelvis. He was able to remove as much of the tumors from T9 and L1 that he could without doing any damage to his spinal cord. The tumor at L4 is on the inside of the spine and was unable to be seen. Therefore it didn't get touched. That was expected and that tumor at this time isn't causing any problems and shouldn't for awhile. Dr. Ching said that there is a chance that the tumors at T9 and L1 will grow back in that area but there is no way of telling. And he said that he bought him a lot of time by removing what he did. Lets see...what else... oh he put cages around the T9 and I think the L1 vertebra. Basically a fake vertebra...to support what is left of them. Those mean ole tumors were just eating up the bone.
The hardest thing for me through all of this wasn't the waiting...not the surgery nor him being in such pain but seeing him after he got to ICU last night. Breathing tube, IV lines in his neck, leads all over, his puffy face/body....I knew in my mind that it was all normal, but it just brought back the memories of seeing mom right after she went to be with Jesus. We were told all the way through that he would be on the ventilator for 1-3days and stay sedated. Well last night Josh started moving around and opened his eyes. :0 Freaked me out! The nurses said that was normal and that they want him to wake up so they can see how he responds as far as movement and communication. I kept asking if he would remember any of it and I was reassured he wouldn't. However at 600 this morning Josh tried to pull his breathing tube out. He has been awake ever since then and at about 900 all of his "numbers" which ever they are were good and they took the tube out! God is good! Josh was trying so hard to communicate to get that darn tube out and trying to do it himself, they strapped his arms to the bed. He is sleeping now. Still heavily medicated. The anaesthesia is wearing off. He feels like hes got a "big rock on his chest". His sternum area is really sore, and his belly is very bloated. He just wants to drink something, which he can in about an hour. He is concerned because it's hard for him to move. He said his "back feels weird" (really) and he saw an "big ape" walk by not long ago. :) gotta love that Fentanyl. The best pain med known to man! Oh and man is he grouchy. His hearing has increased and a tiny noise of us whispering or papers rustling makes him frustrated. He apologised for complaining. I told him he has every right to complain and be grumpy no worries. I am just so thankful that we are where we are today. It's been a long road. I know the journey is far from over but I just feel like we've jumped a big hurdle. He isn't out of the clear yet. BP and HR is up and down. To be expected from the loss of fluids and all the meds. But for now things look good.
God does answer prayers and no one can tell me he doesn't I've seen it! All praise and glory is given to him!
AMEN!

Talked with the nurse again at about half hour ago. Everything is still going as expected. Wonderfully. Josh is doing great, and he said the doc says another couple of hours. That must mean he is feeling confident in all areas and he isn't tired. YET! :) God is defiantly in control. His hands are in that OR answering the prayers for Josh's safety!

I just got a call from one of the OR nurses...

Twice now we have run into one of the anesthesiologist in the cafe. I think he sees us and wants to run the other direction... :)
Everything is going great. No problems. This last update he said that he has lost some blood but not a lot. To be expected. When the nurse said he was doing fine I asked him if he would tell me if he wasn't...he told me that if he had any concerns he would share them with me. That made me feel better. He said it should be several more hours. At least two. More updates to come. Thanks sooooo much for all the prayers. It makes me feel so good knowing that we are not the only ones here waiting!

Today is the day that the Lord has made...

We went into the surgery holding area around 630ish this morning. The anesthesiologist came in and went over all the details with all of us. Very invasive. Josh wasn't to excited about hearing about the lines they would put in, in his neck and extras in his arm. All for safety of course. Bleeding is to be expected and they wanted to make sure there are many areas open for transfusion. So...he did get a does of "I don't care" meds in his IV before they took him to the OR at about 740. And trust me he "didn't care". He was asking what kind of music was going to be played during surgery and called Barbara (our pastor's wife) a turkey on his way out the door. After the wheeled him out Josh's parents, sister, pastor David and Barbara and pastor Chuck went to the cafe for some well needed nutrition and as we were sitting there we saw one of the anesthesiologist getting some grub. A little bit disturbing for about 1/2 a second. He came and shared with us that surgery was just getting started and he and another anest. would be sharing the duties of taking care of Josh and that was why he was down eating instead of TAKING CARE OF MY HUSBAND!!! :) One of the nurses in the OR is acting as our eyes and ears and is staying in contact with us. He called at about 1000 and said surgery had begun at about 920 and everything was going great, he was/is stabilized and things were progressing just fine. I'll post more as I hear more. Next call from the OR should be around noon.

Oh and while we were sitting in the cafe having our breakfast we saw a man/nurse that looked just like Josh, from the back and the side he even chewed his food like Josh. :0 Out of body experience we joked. He was REALLY wanting to eat breakfast this AM but wasn't allowed.

So here we are...

It's Sunday evening, Josh is in Portland currently having an MRI done and from the sounds of it the muscles in his legs are really tired and are spasming like crazy (probably from the drive up) and they've giving him morphine, ativan and now some valium to try and help. I am currently in Eugene at dad and Marges with the boys. Will be headed up to Portland in the AM. Andrew and Joshuah get to spend the next couple of nights with Uncle Gregory and Auntie Jen.

It was so nice to be at home over the last few weeks. It's hard to be going through all of this hospital stuff again. Josh has had LOTS of aches and pains over the last week that seem to be getting worse and then better. My hope is that after surgery a lot of that will go away. Because of the weak areas in his spine he has had to be sooo very careful as to not injure his back. He has been wearing his back brace whenever he is not in bed and that causes discomfort in it self. Tomorrow Josh is having a procedure done where they will go in and with dye find the blood vessels that are feeding the tumors and glue them to help with bleeding during surgery. Then surgery starts Tuesday morning.

The boys are doing well considering all that is happening. I've done what I've always said I was NEVER going to do and have let Andrew sleep in our bed. When it happened once I knew it was allllll over and now its a regular occurrence. Andrew adapted to daddy being home very well I think. He is all over the idea of helping daddy with whatever it is he needs. Very cute! Joshuah is doing great. Growing like a weed. Imagine that. Weighs over 8lbs. Eating about 3oz every 3hrs. He does a 5hr at night. Total opposite of his brother. Mommy is VERY tired and can never seem to make it to bed before midnight nor catch that afternoon nap. I like my job better as a mother and a wife instead of a 24hr nurse. However I am very happy to be the one taking care of my husband and am very blessed to have had him at home with me these last few weeks. We are all anxious to get through this surgery, get home and get working on getting strength back in Josh's legs.

I will try and keep you updated better over the next few days, week. So keep checking in and email me. I'd love to hear from you!

lokua02@yahoo.com

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!

Okay, so here we are at OHSU waiting for more test results. They want to run their own test to make sure it is what Bend says it is. Josh had another MRI yesterday due to some head aches. So far we have yet to hear anything...no news is good news says the doctor. He did tell us today that this could have been going on for years instead of just over the last 6mo like what they had told us.
Josh is moving his legs more and better today...and yesterday. Getting stronger. He is defiantly determined to get moving better, especially is it means he can sit on the toilet again. Shh I didn't tell you that. :) This is a great hospital but the new face lift hasn't caught up with the rooms yet. Small, old, cracker box. It is depressing but it could be worse.
Andrew is doing well considering everything. He is getting use to being at papa and nana's and spending time with Auntie. He wants to be with mom and dad but he seems okay with it all.
Baby Joshuah is ready to go home. Doing really well. They are going to keep him in NICU for the week until we know exactly what these test results say and what our plans are going to be.
We appreciate all the prayers. God is good!

The next chapter...
Today (Friday) Josh was transported to OHSU in Portland. The Pathology reports that have come back show that he does have cancer. Alveolar Rhabdomyosarcoma...a type of soft tissue/muscle cancer. It is most common in children but is seen in adults...obviously. Easily treated with chemo and a high potential of going into remission. The doctors seem pretty confident that the treatment will work. OHSU has been the recommended place for his treatment because they have a license to use experimental drug therapy that the other cancer tx centers do not have. Josh started with physical therapy yesterday and also met with the occupational therapist. Not much was done but a basic evaluation. They did get him sat up on the edge of the bed and up enough to get his bedding changed. Because of the spinal cord injury from the tumor pressing against his spine, he doesn't have much movement in his legs. He can feel his legs and feet, move his toes, lift his legs a little bit and push down with his feet, but that is about it. He has made a lot of progress just over the last couple of days and even more over the last 24hrs. He will start up with a physical therapist as soon as he gets settled in Portland. They say it could take up to a year before he's back to "normal". I heard it could take up to a year before he is climbing stairs and is walking like he was 6mos ago. However he could be walking and back to "normal" next month. Josh is strong in all ways, and I know he has the determination to conquer, and will be walking soon! God has carried us through all the way and has shown us what he can do when we depend on him. We take one day at a time and put our lives in God's hands. We all know that chemo has a different effect on each person. My prayer is that the effect it has on Josh isn't going to make him as sick as it could, that he will continue to keep his strength mentally, emotionally and physically. It is hard to stay positive for us all but with God's strength we will get through this!

So we met with the oncologist a little bit ago. No test results back yet on the biopsy. He is pretty convinced that it is a sarcoma cancer. The test he had done today show leisions on his ribs and some more tumors. Providing it IS this cancer plan is to pack Josh up and transport him to OHSU in Portland on Friday. Not forsure yet it all depends on the pathology results. Thanks for your prayers!

Our God IS big enough...

As you all know Josh has been having some back problems over the last couple of months. Last Friday we took him to ER in Eugene because he was having some numbness and tingling in both of his legs. The docs loaded him up on meds (of course) did some neurological test...meaning he isn't paralyzed cause he could move his toes and legs a little bit, sent him home and he was to follow up with his doc on Monday for an MRI. Monday comes has the appt, yes there is something wrong, can't get an MRI done till Wednesday (today). Well early Tuesday AM Josh fell (he's been staying with his parents) and they couldn't get him up. Called the EMTs to get him off the floor and into the car. To the hospital. Finally got the MRI done. It shows two tumors in the muscle tissue on/near his spine, one on the back of his sternum and one somewhere in his left thigh area. I am unsure of the exact location. He was transported by air the St. Charles in Bend for emergency surgery to relieve the pressure one of the tumors was causing against his spine. Surgery went okay. He lost 2L of blood, but the surgeon was able to get what he needed for the biopsy. At this point they are saying it's probably cancer. Unsure as to what type. We will know over the next 24hrs what we are looking at here. He had a head to toe CT and a testicular ultrasound this AM and is now having another MRI done as I write this. Josh is on pain meds of course but seems to be pretty level headed about it all. I am hanging in there. I've come to realize over the last couple of months that to worry about something isn't going to help. That doesn't mean I don't care what happens but until there IS something to worry about it's pointless. I want facts before I "freak out". We can and will get through this no matter what happens. Look at all God has brought us through up to this point. Some say "how can this happen to you guys" and I have thought to myself what next....for real? But I believe it's the devils way of breaking us and Gods way of saying I am here...depend on me. And that is exactly what we are doing. Because we can't handle this on our own, nor do we want to.

Lots of prayers...

Dad and I drove over last night. Josh's dad is here and mom is on her way. Andrew is in Eugene with Marge and Jennifer. Joshuah is doing FANTASTIC! Just about 5lb 2oz. Taking a bottle for most of his feedings. He is still learning the whole suck, swallow, breath AT the same time thing. But doing very well so far. His doctor thinks that he may be able to got home next week....where ever home is. :) Where that heart is right?

Josh's surgeon said he'd probably be here about a week and then they can possibly transport him to a rehab center in Eugene depending on what all the test show. Please keep the whole family in your thoughts and prayers. I know this is trying for all of us. But like I've said our God IS big enough...

I can't believe Joshuah is already 10 days old. He is such a precious little thing. He sleeps ALL day which of course is normal...he is working hard on growing ya know. :) The doctor gave him permission to nurse and he doesn't even want to wake up to attempt trying to work for his food. Why would he want to do that when it's just pushed into his tummy every three hours and he can KEEP sleeping? He is doing really well. Yesterday he weighed 4-7 1/2. An oz up from birth weight. His feeding tube through his nose and his heart monitors are the only lines/tubes he has hooked to him. Yesterday he was moved from his lil incubator to a crib. The nurses all make comet on how big he is, but are then reminded that he is still really young. Considering the situation I don't think I could ask for a healthier baby.

I am doing as good as I could be considering the extra stresses. Going into surgery wasn't as horrible as I though it would be. It was actually pretty cool. (it was FREEZING in that OR) Because of risk to baby they waited till the last minute to"put me out", all scrubbed up, strapped down, 15 people on in the room, scalpel in hand and THEN I was gone. Woke up asking if Joshuah had any hair. :) I know whats important. Ha ha. I spent Friday trying to wake up. For me is was the hardest thing to do. But from the sounds of it I shouldn't have even tried to attempt the process as I was just looking like a fool on drugs. Saturday was a little bit better. Most of everything but the pain meds had worn off throughout the night. I finally got to see our little man that morning for a few minutes. Thank you to all of you that wanted to see Joshuah but waited because I wanted to see him first. When it comes down to it, it probably didn't make sense, but to me it meant the world! So thank you! I had good days and bad days throughout the week. I was preped and told all about having a c-section and the process and pain, but everyone failed to tell me about the pain of "trapped air"! I thought I was going to die! It was the worst pain I've ever had!!! Yes the lung pain and kidney stones were bad, but this is a totally DIFFERENT pain and place. UGH! I can't even explain. But by the end on Tuesday back on an IV and lots of drugs and lets just say lots of "intestinal treatment" I was a little bit more comfortable. Geesh what an experience. They kicked me out on Friday. Okay they let me go. :) It was totally bittersweet. I was ready to get out of there but it was hard making the change. Emotionally. Just adds all the more feelings to post pardon depression. Now that I am somewhat settled and have a visiting Joshuah schedule it is nice not to be stationed at the hospital and it is defiantly nice being able to come and go as I please.

Josh and Andrew are still staying at home and are here a few days a week. Josh is still having back problems and your prayers are always appreciated. Andrew is cute with his little brother. He comes into Joshuah's room and instantly gets his stool and looks into Joshuah's bed just to make sure he is there. One day Andrew didn't realize nor was he listening that I was holding Joshuah and he proceeded to look into his bed and was a bit confused when brother wasn't there. However after he checks it all out and sees that brother is truly there then he is off and on to the next thing.

As Josh, Andrew and I and now Joshuah are all feeling the affects of being separated your prayers are always needed. We plan to be home together again around the first of the year. Not to much longer but it feels like a life time. God is still BIG enough as he has show us over the last 6weeks. He is an amazing God and we pray that we will have his strength.

I just have a quick minute, on my way to feed baby Joshuah. Everything is going good with both of us. We've had our good days and our set backs but nothing that isn't taken care of. Here are a few pictures. I'll get some more on later. Keep us in your prayers!

HOLY COW! I can't believe how fast time has gone. No I wasn't saying that two weeks ago let alone a week ago. Two more days and we'll be turning another corner in our life. Today is really the first day I've felt like I am ready to be done being pregnant. I receive a steroid inj. for baby's lungs yesterday in my right hip and today in the left. Yesterday it was not bad at all. But today both of my hips were very sore along with my lower and middle back. Not to bad. About two weeks or so ago my doctor wrote orders so I could go down the hall to labor and delivery and relax in one of the jetted tubs. It took until Thanksgiving for me to take advantage of it and sense then the unit has been so busy that I couldn't get a tub until 11:00 tonight. It felt sooo very good. :)
IV fluids will be started Thursday night. Surgery is scheduled for 8:30 Friday am. My doc estimates about an hour before I am to recovery. I'll then come back up to labor and delivery and be monitored for awhile longer before returning to my room. At one point one of my docs said it would be Saturday before I'd get to see Joshuah but then this morning the other doc said he would be shocked if I didn't get to see his on Friday. That made me feel better. Joshuah will be moved up to NICU shortly after he is born to get all set up. I asked if the birth could be video taped or at least some pics. No video (didn't expect it) but my doc said he will see if one of the nursing students who does not have to scrub in could take some pictures for me. I thought that was nice.
Be praying for my other boys. Josh is still fighting his back pain. He had x-rays done yesterday and thankfully it only showed some major inflammation and not a damaged disk. That is a blessing but he still can't do much. Andrew came down with the stuffies and a cough over the weekend, is mostly over it and now Josh has it. If he doesn't get better before Friday I can at least hope that they will let him scrub, glove up and put a mask on so he can see Joshuah after he has been moved to NICU. All else fails I would think he could look at him through the door. However that may not even be an option. Only time will tell.
Thinking about it I still wonder where the time has gone. I've enjoyed being pregnant and wish is wasn't soon to be over. But I am VERY thankful that this whole long term hospital visit is almost done. I couldn't have asked for better nurses or doctors and I will miss their caring and thoughtful personalities. Huh I'm talking like I am getting out of here tomorrow. :) sill a little bit longer.
I thank God daily for all he has done. I've been healthy and strong all the way through. He reminds me that to worry about my situation will accomplish nothing but I should give my worries and concerns to him like I've done all the way through. Our God is great and is to be praised for all!

1wk 3days (I am only counting whole days)

Everything is still going pretty smooth. When I had my ultrasound on the 6th when I first got here baby was around 2lbs 12oz. I had another US last Thursday...two weeks later and he is around 3lbs 9oz. 12oz in two weeks. I hope he will gain that much or more over the next two weeks...that would put him around 4 1/2lbs. Hooray! It is hard to tell exactly what he weighs when we really CAN'T weigh him! :)
I am still ready to go home. I've been trying to do a lot of walking. From one end of the hospital to the other is a 1/4 mile. I know when it's time to sit when all my lower abd muscles start yelling at me. :) I have still not had a moment of boredom. Which IS good. If I were strapped to my bed that would be a different story. The food is getting boring however. I am learning that if there is something I want just to write it on my menu and if they have it they'll bring it. I have been fortunate to have some home cooked meals lately. Even some good take out is better then low carb, low fat, less protein hospital food. I guess it's really not thaaaaatttt bad just boring. The cookies are good. :)
Hope everyone is doing well and has a wonderful turkey day!

Have fun shopping on Friday!!!

2wks 6days...the count down has started. For me anyway. I am ready to go home, a week has been enough :)

Delivery is scheduled for December 5th at 8am. Not sure yet if I am going to have a spinal or if I am goin totally out. The risk of bleeding with the spinal isn't safe, but they arn't so sure putting me under would be the safest either. Everyone is getting to know the patient in 206 :) It's defiantly bringing awareness of Ehlers Danlos. There was a nurse that was off for a few days and came back and said she was researching me...well EDS. It's nice to know that they have an interest in my "case".
Josh and Andrew came down on Wednesday and home today. It's only a few days in between but it's still hard not being around them. I cried today when they left and I was holding Andrew, he said "mommy why you crying?" I said "cause I am going to miss you." Josh told me it would be okay and it would only be a few days, then Andrew put his hands on my face and said "it's okay mommy." It was cute very sweet. I am just glad he wasn't upset about having to leave cause THAT would have made it a lot harder.
Keep Josh in your prayers. His back has been hurting pretty bad lately. Not sure EXACTLY whats wrong but he'll being seeing a chiropractor on Monday. Hopefully they will do an x-ray and he won't HAVE to go to a "doctor".
Will keep you posted. Stay in touch!

Day 5 already! It's feels like I've been here for a month already. Mr. Joshuah is very wiggly. Everyday when the nurse puts the monitor on to check heart rate and check contractions he is hard to find, then we get him on and then he goes away. He thinks he's smart now. Just wait a few more weeks...he won't have much room to move, don't know how he does now but hey.

I've been feeling okay. Tired, some small contractions. Nothing to worry about. Met with the Cardiologist again today. She and my other doc agreed that another MRI of my aorta would be good. So I just got back from doing that. We were almost done and then I started feelin bad...head ache, bad lower back pain, cramping, and it was HOT in there. Plus baby was jumping around a lot and then just stopped which made me nervous. So we stopped for today and if there is not enough info for the doc then we'll do more tomorrow. The nurse just came in and said there was enough done and so I don't have to go back in tomorrow. (Good news)

We should know better tomorrow when exactly we're going to deliver. Dr. Katz said he'd get it scheduled tomorrow and let us know. We're probably looking at the 4th of December providing everything goes smooth until then.

Josh and Andrew went home on Saturday. It's been lonely with out them. But it sounds like Andrew is happy to be there. Back in his own bed....lucky boy :) It was cute, Josh called me yesterday on their way to church and I was talking to Andrew he said "I woked up, comb my hair, got toofbrush and told daddy no" I guess he didn't want to do things the way daddy wanted to. He is to use to mommy taking up time in the bathroom and not being done as fast as daddy. Guess he wanted to take his time. :) I love that boy! They will be back to visit on Wednesday and then home again on Friday. Pray for a safe trip and clear roads for the boys.

Will keep ya updated through out the week. Take care and keep prayin.

Day one,

My appt went well this morning. Had an ultrasound, Joshuah is getting big, more fat on his bones. Weighing about 2lb 12oz measuring at 28wks 5days instead of 28wks. So that made my day! After the appt we went to the mall for lunch one last time and then arrived back to the hospital for admission. Now at 6:00 all of the paperwork and monitoring and question have all been complete. Monitored baby's heart for awhile and realized just how active he really is! Silly boy

Dr. Katz said we'd do another ultrasound in a wk or two same with an echo. The high risk baby dr will be in tomorrow and we can then also tour NICU. No bed rest yet, but I also won't be leaving the facilities. That also means no going anywhere for Thanksgiving. "it defeats the purpose" true but disappointing. Better safe then sorry I know.

I am amazed how fast time has gone as I've said before. I thank you all for the thoughts, prayers and support. Hope your all doing well. Stay in touch. Email me for all the hospital info. I defiantly up for visitors. :)