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. :)