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

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

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

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

Moving and grooving!

Alright guys. So Jason had his hip surgery yesterday. It took about two and a half hours, Dr, Satcher was able to just do the resurfacing and not a complete replacement. This is good because when he has todo this again in 10-15 years there is more of his own bone left. We finally got into a room around 7pm last night and it is on a floor that we spent some time on in 2009. Jason is doing great. He got up and walked really well with a walker. So well that they are going to try crutches tomorrow. He says there is no pain in his hip, only in the muscles and tissue, and burning around the incision. He is actually walking the best I have seen him walk in quite a long time. I am so proud of him and his determination. I. Know it's cliche but he amazes me daily with how much he has overcome and how much drive he has to keep going. On a different note, it was very odd for Jason and I to come back here and stay. It was with conflicting emotions. There was no impending death or doom hanging over us. This was a good step, a step towards healing the damage and letting Jason start living life a bit easier.

Another step towards healing....

Well I am extremely embarrassed that it has been so long since I've written on here. So much has passed since we've last talked. Jason is in school and doing well grade wise. The campus is very hard on him as those of you who have been to it know. I'm doing well too. I officially have one year left until I have my bachelors. It's been a road long travelled and I've worked hard for it. Ronan is doing fabulous. He is enrolled at a private school and it has actually helped with slot of his sensory processing issues. He is getting ready for a dance recital and to graduate Pre k. That's right folks our baby starts kindergarten in the fall. Now for the update. Jason has been having pain increasing in his left hip. This is the one that the tumors grew through and later that fractured. I had him assure it was not "cancer pain" as I did not want to be blindsided before finals. We called and bumped up his appointment with his orthopedist doctor down at MDAnderson. Well we got there today and they took X-rays. We met with Dr. Satcher to discuss options. There are two. 1. We do what is called resurfacing. Basically they will smooth out the hip socket and place a metal piece onto to Jason's existing femur or 2. A total hip replacement. We discussed the pros and cons of each and decided because of Jason's age we want to do the resurfacing. It's supposed to last twenty years but it is new technology so we will see. I t saves more of this existing bone so that in 15 to 20 years he will have a stinger base for then total replacement. We go down on the 16th of May for the surgical consult. We decided it was best to do it this summer because that way j would be missing less classes. Athoughtless this bums him out greatly because he was getting back into the swing of things. He will have the surgery down at MDA, we feel they have a better grasp on his case since they have been there since al out the beginning and that they probably have the most experience with cancer destruction of bone. He will hopefully be back up in Austin for his rehab. I start summer school June 3 so we will see how it all goes. He should've be in the hospital about 4-5 days, then 6weeks for major healing and a wicked limp(nothing new here) for around 3-4 months. He should be feeling pretty good by fall. Tis to both of us is a fantastic step towards healing. He will never be the same because of what he has faced, but this will help him feel better physically and help him walk a little taller. For those that know him that's not really needed either. Send up a little prayer that things go smoothly. I will update more now that there is a bit more to talk about. Prayers welcomed. Kimmy

Update

So hey all! We had the scans and it was not cancer just him sitting too long without pain meds.. He does however still have the supper cruddy osteoporotic hips. We have an appointment later in August to see if we are ready for hip replacements yet. Big news...Jason got into Texas State university...he is getting to move on away from cancer! Ronan is enrolled for preschool for the fall, a uniform and everything, signed up for soccer, speech and occupational therapy, and maybe swimming if we can fit it in. Me well you all know me, I have school and juggling the logistics and everything else. It's all okay though. Life is good! Prayers Welcomed! Kimmy