Thursday, January 30, 2014

HOME

Today is Thursday January 30. Jason was released from the hospital Monday night. Quite conviently after I had already left to come back to Austin to beat the bad weather in. Ronan was missing me and I had work on Wednesday morning. He was released on meds for his headache and is taking them and some other medicines pretty much around the clock. He is moving around relatively well for what has been done. I went and picked him up from his parents house yesterday. The ride home went better than I thought it was going to. He still has the headache but this morning he said it was getting better before I left to take Ronan to school and go to school myself. Jason is quite happy to be home. He kicked back in his recliner and watched TV and hung out with Ronan and me a bit. On the whole I think he is doing okay. If we could the headaches to end completely we would just be left with gimpy Jason, which honestly we are getting used to. The incision is crazy big, but is healing. We go back February 13th for a check up. However if the headaches dont subside we will be taking a side trip to the emergency room. Hopefully that does not happen as I have lots and lots to do. Will update more later. Prayers Welcomed~Kimmy

Sunday, January 26, 2014

Might be over the mountain....

Todays update: Jason walked around the nurses pod 5 times yesterday morning and took a stroll around both nurses pods last night. They have stopped the epidural and put him on oral pain killers and we will see how this works out. The drain to his incision site is still putting out too much yuckies so it will have to stay in until at least tomorrow. He is a bit high loopy as the nurse gave him two 10mg Norco (the order was written this way) instead of one 10Norco every four hours. Its best if he doesnt get up for a bit. He is eating and drinking just fine. We are waiting on the results of pathology but that wont happen until Monday at the earliest. Nothing much happens on the weekends here at MDAnderson. His nurse right now is named Jason too and we were ganging up on my J as to the benefits of owning a GoldenDoodle. J was not buying it. We are face timing with Ronan but the little guy misses us as we miss him. Hopefully J will be released tomorrow or at the latest Tuesday. I miss my little man, my bed, and strangely enough school and work. Prayers that Jason's pain will be controlled with the oral meds. Prayers Welcomed~Kimmy

Friday, January 24, 2014

Always an adventure even if I'm bored!

Well we are still here. Today's update is as follows. Jason managed to get up and walk around the nurses pod today. Wahoo! I'll make him do it again later today. The drain in his leg I s still putting out lot of fluid so that has to stay in for another day or two. His pain is still be well managed by the epidural but the epidural is causing positional headaches. Basically if he is upright is head is pounding, if he is laying flat no headache. They have given him Tylenol and toradol and caffeine! I made a French press of coffee ( thanks starbucks) and it has helped. He has managed to rip out one Iv (accidentally) another infiltrated and the current one only works when his hand is one position so it's mildly odd that we are actually missing the picc line. We have watched a pawn stars marathon as well as dukes of hazzard one. It was entertaining watching the news with the snowpocalypse in austin and the icepocalypse in Houston. The Yankee nurses are making fun of everyone. Dr.satcher said for us to make ourselves cozy for the weekend so we will see when we get to bust out of here! Update more tomorrow. Prayers welcomed~Kimmy

Thursday, January 23, 2014

99 problems but pain ain't one

Hello all. Alright a quick update on Jason and the rest of us. We got here for surgical check in at 930am and I don't know what happened but he didn't go back to prep until sometime after 1200. We decided to do an epidural to help with pain control after the surgery. Glad to report it is working fabulously and Jason is as high as a kite. It's entertaining at least. The surgery took about three hours, much better than the predicted five and a half. He has a nice upside down u shape incision to go right next to the sickled shaped one from the hip resurfacing. They pulled down his. Gluteus muscles and removed the mass and were able to basically hole punch a part of his pelvis out. Dr. Satcher said that the cells were dividing but they did not appear malignant that's why they opted with a more conservative approach. They won't know the full pathology until Mondayish. He says he believes it was pre-malignant. Jason will just go back to having scans more often for a while. Still a success in my opinion and better news than we thought we were going to hear. He did attempt to walk this morning, it did not work very well. He stood but his left leg did not want to cooperate with him. They are dialing back the epidural and we will try again in a bit. Last night was rough, he was incredibly nauseated and was throwing up. Yucky! Zofran didn't work, finally they gave some phenergan and that did the trick. He was able to eat this morning and kept it down. Its always funny calling in food for him because the people who take the orders never seem to believe that I really am just ordering for him. Oh well. I'll let y'all know more when we do. Thanks for the prayers and good vibes, they seemed to have worked! Prayers welcomed~Kimmy

Monday, January 13, 2014

Information, but no answers really.....

Jason went to talk to dr. Satcher(he's the guy who did j's hip surgery and is an astronaut). What we had planned as an in and out excision of a small tumor or growth has now turned into something more complicated. After the MRI and X-rays and Jason's case being presented at the sarcoma powwow, it has been determined that there is bone involvement with this growth. So that means that instead of just removing the growth they are going to have take out a portion of Jason's upper iliac crest (top wing of the left pelvis). Thisdoes not involve anything that should effect structure stability. He will have about five days in the hospital to recover and then must take it easy two- four weeks with the walking, no driving, those kind of things. I'm not entirely sure what that means but okay. We are bummed because we thought this was going to be just a bump but whatever, when had Jason's case ever been easy or typical. He is sad because he had to unenroll for the semester, I just hope my professors are understanding of next week. Anyways the surgery will be next Wednesday the 22nd. The sarcoma pathologist wants the entire excised piece for study, there is still a possibly of chemo if it turns out this is malignant. He cannot have radiation as he is maxed out for that area. That's about all I know for now. It was hard news for us to take and it's going to be rough on all of us juggling everything but we will manage, that's what I keep telling myself! Well prayers welcomed! I'll update when I know more. Kimmy

Monday, January 6, 2014

Answers lead to more questions.

Alright so the biopsy showed that the ball of whatever is a soft tissue tumor. We do not yet know if it is cancerous or not. They will have to cut it out and see. If it is they will take out a bigger section of the muscle to prevent it from recurring. If not, the removal should suffice. Now, it is speculated as being caused from Jason's radiation treatments that he received back in 2008 and 2010. We knew it could happen and it fits in the time frame. Jason's doctors are all working together and going to present this at their dr powwow tomorrow. Jason then meets with them on Thursday and we should have a. It more information about how we move forward. So....not the best news we could have got, but not the worse news we have received by far. Let you know more when I do! Prayers welcomed! Kimmy

Thursday, January 2, 2014

Waiting is the worse part....

So, here I was thinking I got to put this blog away except for the occasional updates. Well, hopefully that is still in the plans. We went in on December 19th for Jason to have his six month scans, the results came back that there was something in his gluteal muscle that was there six months ago but has grown a couple of millimeters in the past six months. Imagine our surprise because it has been three years post transplant and this is the best Jason has looked in five years. Drs. Tannir and Nieto decided to do a biopsy that was done last Friday. Almost two weeks after the news we will get some answers. Now this cyst, nodule, whatever can be just about anything so literally all we can do so wait. Jason's tumor markers are still in he normal range and to my control freak self have only risen a tiny bit. It was crazy hearing that news when we expected to be elevates to the survivorship clinic for yearly scans. Neither Jason or I cried because frankly I think we were and still are in shock. It was a blow because after three years of moving on I had forgotten how to deal with news like that. We lived under constant strain for so long it had become just normal. And then we had a chance to become a new normal for us and then this. Oh well, enough of a pity party. I did not tell y'all that I got a parttime job on top of school and being a mom and wife. Strangely enough I love it. It's actually a release to go to work. I also have amazing coworkers who rallied around me and offering whatever I needed to see this thing through with Jason. God puts the people you need by you when you need them. In Houston it was the wonderful ladies of the bravos crossing sweet Adeline's and here it's my coworkers at Starbucks. In other news the spring semester is getting ready to start up, it's my FINAL semester as an undergrad. It has been a long crazy journey but it will be done! Jason is enrolling again and has said no matter what he will be attending. And Ronan will be stArting a new school. Jason and I felt that an older teacher would have more experience dealing with and AdHD kiddo. Btw, Ronan was diagnosed with ADHD, just like his dad. Lol. He is doing fantastic on his medicine though and is excelling at school. Well the we are in a nutshell. I really shouldn't stay away so long, look what happens! As always prayers welcomed, Kimmy