Here we go again....again

So, Im sitting next to Jason in bed thinking about how much I did not want to relay this information. I suppose if its hard for me type think about how hard it is for J to live it.
We went and saw Dr. Tannir this afternoon. We did not really get any news that we did not execpt to hear. Hoped not to but well you guys know the drill. It was confirmed that Jason's cancer is back and it is indeed Seminoma. So the next course of treatment that we did agree with is a High Dose Chemotherapy (HDC) followed by a Stem Cell Transplant (SCT). Alright from what I know from research, we will know more after meeting with the Transplant Coordinator, is he will get chemo actually tomorrow 5/19. This will be carboplatin and cytoxan. I dont know much about these yet I havent looked them up. Shocking I know. In about 3 weeks we will go and they will harvest stem cells. Jason will be using his own stem cells which makes this an autologous stem cell transplant. They harvest these by taking the blood out the catheter and putting in basically an apheresis machine (for those who have donated platelets, plasma, or red blood cells) and return the unused parts back to J. When they have enough cells for the two "rescues" they will then start HDC round 1. I dont know the chemo meds they will use but I know that it will be VERY HARSH! After that is complete I believe 3 days they will then push some stem cells back in to rescue his blood counts. Then we wait about 7-10 days and go back in for HDC round 2 and stem cell rescue. I really dont know all the logistics yet, we are being referred to another Doctor to do this procedure. Dr. Tannir and staff will still be the primary team but this is not his specialty.
Right now we are waiting to hear back if insurance will cover this and how much they will cover. I see some benefits in our future so get those ideas ready. I will not lie, the upcoming months are going to be very hard on Jason, me, Ronan, and our families. I know that everyone wants help and now more than ever I will be taking you up on those offers. Well...as soon as I figure out what we need help with. Prayers always welcomed. Oh and I will depart with some words of wisdom that a Chaplain at the hospital told me. Do not carry another's burden, you have one of your own. When he told me this it was a bit of an Ahh HAA moment for me.
Love you all,
Kimmy

Update

Alright, yesterday was one day post surgery and I dont think that things could have been better. WOO HOO!! Jason was able to sit up and walk around. I must say it is funny watching these tiny nurses trying help Jason around. Literally he would make them pancakes if he did fall. He was even able to take a shower. Boy did he need it. Oh and he actually sat in a chair with an air cushion (courtesy of occupational therapy) for 45 minutes. This has not happened since the begininng of March! He was visited by physical therapy and she was very happy with the progress that he made. His restrictions for right now are no bending, twisting, of lifting. Like I mentioned before he was also saw occupational therapy. Other than the cushion he did not need much from them. He can already dress himself and what not. However when Jason is able to start riding a motorcycle again they will be able to help him make it as comfortable as possible. Thats very exciting to him. Dr. Azeem (neurosurgeon) came and basically reiterated what was said before. Hopefully we will hear from Dr. Tannir today. So yeah for some good news. Let you know more when I do. I do have some pictures of Jason before surgery and after and even one of his war wound. I got a new camera for Mother's Day and as soon as I figure out how to use it I will post some new pics. Thanks for the Prayers!

Post Surgery News

So everyone, we had to be up here at MDAnderson at 5:15am. We were here BEFORE the people who were suppose to check us in. They took J back to PRe-op and did all that fun stuff and finally took him back to the OR around 7:30am. At about 10:30 we got an update from a nurse that they were closing him up and the Dr. would be out to talk to us in a bit.
Dr. Azeem(J's neurosurgeon)talked to us and said that the preliminary readings on the frozen section they did show that this is seminoma. THis means that this is the same cancer that we have been dealing with since 2008. He said that they took a good portion of the sacrum(tailbone) that did not have anything to do with structural support. He said they also removed quite a bit of epidural tissue(tissue surrounding the epidural space in the spine) that was decompressing some nerves and causing Jason problems. He said that only time will tell whether or not this was successful but he did say upon closing that the nerves looked good. Jason has a drain in his back until the output of some stuff(blood, plasma, I dont know what else) is lessend. He let Dr. Tannir know of the findings of the frozen section and more information will be known later this week. Once we know a little bit more we will hammer out a treatment plan that will be implemented in a week to two weeks depending on Jason's healing. He is resting relatively comfortably he has a good amount of pain meds on board and has a PCA pump (diluadid at the touch of a button). I know that he has consults for physical therapy, occupational therapy, rehab and physical medicine ( i have no idea what this is), and chronic pain medicine. I dont really know how long we will be in here this time. Dr. Azeem said that they would probably start on the oncological (cancer dr) side of things before we are released, but I really wont know until we talk with Dr. Tannir. So all in all I dont really know where we stand, but I do know that we stand ready to fight again. We are in room p828 and again I shamelessly ask for net notes(see previous post or the one before that) or an email, they help lift our spirits! Thank you all for all the prayers I know that were being offered in Jason's name. As ususal they are always welcomed! Love to all, Kimmy

Surgery around the corner

So we got a little more info. Either tomorrow(friday) or Tuesday he will be going for an open biopsy of the sacrum. It turns out its a little more involved than we thought it would be. During t the surgery will try to get as much diseased tissue and bone out as possible while trying to spare the nerves. This will help with making as small of area as possible to treat with radiation and or chemo. The surgery will be about a 3 hours. As with all surgeries there are risk and possible complications so please pray for guidance for the surgeons and for smooth sailing. I know this is not long but thats about all that I have for now. Love to you all, Kim

Update

So they did another bone marrow biopsy and aspirate. This time they did not use the ct and it was actually performed by the guy who trained me. They had a hard time getting an aspiration due to the previous radiation that J has received. They now sent that off to pathology and to microbiology. We talked to an orthopedic oncologist about the stuff going on in his pelvis and he believes that we are actually dealing with two different issues. He thinks the stuff in Jason's hip is osteonecrosis and is unrelated to what is going on in his sacrum. He is talking with his attending about the open biopsy for Friday and we have an pelvic xray and mri in the mean time. We also talked with a neurologist as well and all of Jason's other problems is due to what is happening in the sacrum. His markers are still normal but he is reasonably sure that this is a cancer, still we dont know what type. So he is going to talk to his attending about an open biopsy for the sacrum. That is where we are now....just waiting.....still......

Still baffled........

Ok so as you all know Jason had a core biopsy done on Friday. Well we received the results today and well they .....we dont know. Basically inconclusive to anything that is causing this stuff in J's hip and tailbone. What it did show was fibrosis, which is basically scar tissue. On one hand this is good news because it didn't show out right cancer. On the other well its not so good because we still dont know what we are dealing with. We do know that fibrosis does not spread, which is what this is doing. So where do we go from here. J is scheduled for another bone marrow aspiration and biopsy they will send it to pathology like before but also to microbiology to delve deeper into the infection side. They will also probably do qn open biopsy which is where they will cut J's back open and see where they want to take the biopsy from.
So now we are really no worse or better than we where before. They decided to change J's pain meds to Methadone, Norco, Lyrica, Dilaudid, and Celebrex. It seems to be doing okay. It will take a day or two to get him to optimal levels.
As for J and I, we are doing okay. We are just anxious about finding out what exactly is going on. The good news is that his tumor markers for testicular cancer are still remaining normal. I dont actually know when we will be able to get out here. Ronan is with my parents apparently having a blast. We got to see him yesterday and that was awesome and we will get to see him tomorrow. If anyone feels like visiting thats cool we are just chilling up here. The number to the room is 7138348797 if anyone wants to call. You can send messages to the room by going to www.mdanderson.org/contact_us click on "Message to a patient" under "Patient, Friends, and Family" Its called Net Notes. Volunteers will deliver the messages to us in our room. Keep praying guys that the doctors will be able to quickly pinpoint whats going on.
Kimmy

A little more information....

Ok, I have a little more to go on now. We now know that this is not a recurrence of Jason's germ cell cancer, his tumor markers are at 0 and previously the sites where there were cancer there is nothing, he is completely clear except for the pelvis and sacrum. Now what is in the hip is not clear, there is no delinated tumors but they could possibly be permeating lesions. So that leads us to what it can be. Jason could either have an infection of some sort, he could have teratoma with transformation into lymphoma, myeloma, leukemia.etc... or he could of had two different cancers all along. We will have the preliminary readings of the core biopsy tomorrow and a game plan to go along with that.

We are waiting to speak to pain management again. They have Jason on Norco every 4 hours (basically vicodin with tylenol) and 2-4mg of Diluadid(hydromorphone) every hour as needed. They uped his Fentanyl patch to 75mcg every 3 days. (this gives a continuous opioid into his sytem the entire time the patch is on). Lyrica (controls nerve pain) 200mg every 8 hours, Decadron once a day (steroid, anti inflammatory), Celebrex (anti-inflammatory) All of this and he is still in pain. We are discusing an implanted device that would deliver anesthesia to that area allowing him to cut back on pain meds.

Well I will post when I know more. Keep those prayers going up!
Kimmy