baffled and enigma

So a Dr. Millikan came in this morning...he apparently works with Dr.Tannir. The first thing he said to J after he introduced himself was that they"were baffled and that Jason is an enigma." He said that they thought the whatever in J's hip could be one of two things. 1. an infection..be it fungal, parasitic, tuberculosis, they would not know until a core biopsy. 2. teratoma with transformation. From what the dr. said we DO NOT WANT THIS. We went and got the core biopsy and the nurse that was with Jason said that she did not know what it was they saw but it did not look like any tumor that she has seen. ( They did the biopsy through ct guidance because of the fracture in his hip.) We wont know anything til Monday at the earliest supposedly so I guess we just cool our jets until then. We both had our break downs earlier today, I went and talked with a chaplain and now we are ready to face whatever is before us again.. Please, Please pray guys, the power of them are amazing!

Back in the old routine.....

So we are back at MDANderson's Er. The middle of the day is the time to come...there was no one here. We have a room in the er dept and the visitor chair is not too bad. So thats good for me. We are here for Jason to be evaluated for possible spinal cord compression. He has been having some pretty bad pain and a few other symptoms popped up so I went ahead and called the clinic today. I got the charge nurse..the same one who was not very helpful this past week became all kinds of helpful when I told her Jason's symptoms. She did a 3way call with Dr. Tannir's PA and Zita(said PA) told us to come to the ER for evaluation. So here we be. They have drawn blood, given him some steroids and painkillers, and he is currently stuck in a tube somewhere for an MRI. The best case senario if it turns out to be spinal cord compression is that its just swelling and irriation from the pelvis fracture and working on my car, worse case senario is tumors compressing the spinal cord. Either way we should know some more in a couple of hours. I will update again when we know. Prayers are welcome.

So again insert witty title here..

We went to MDAnderson and got the report for Jason's 2 month scan. Well to put you all out of suspense we did get an all clear, there is nothing on the reports, markers, or physical exam to suggest a recurrence. However, because thats the way we roll, the pain that Jason has been having in his back for the past month is due to a fractured pelvis. Luckily it does not go all the way through. We cannot determine right now if it is due to progression of disease (recurrence) or the healing process. There are signs to point that Jason now has osteoporosis. Within the next 2 weeks we should be getting a bone scan and a bone density scan to determine what damage is done. We will then go to the Endocrinologist to determine the best course of treatment. In the mean time Jason will go to the Pain Management Clinic and we will see about getting his pain under control (again!). The node that was enlarged on his right lung on his last scan (the one we were going to keep an eye on) has resolved itself, but another has shown up. Like the last time all we can do is wait and see what the next scans tell because we really dont feel like going through having a ton of biopsies done and everything still point to waiting.
As for the lymphedema, Dr. Tannir agrees with me(go KIM) that it is from the radiation that Jason went through in 2008. It will be something that we will just have to deal with from time to time. Since it is not constant J will not have to be put on a diuretic.
So on one hand wahoo, we can breathe a tiny sigh of relief for now, on the other we have yet one more hurdle. Oh well, who would have thought that having a fractured pelvis would be good news!!

Out,
Kimmy

Lymphedema.....

So all was set for Jason to go to New Orleans with Adrian this weekend, well once again best laid plans. This morning J woke up with both feet, ankles, and legs swollen. We took him to Memorial Hermann, they did an ultra sound, chest x-ray, and blood work. Every thing came back negative. The Er doc diagnosed him with Lymphedema which is basically retaining fluid in a extremity. I called Dr. Tannir's office but apparently everyone thought it a grand day to not be there. So I emailed when we got home and I will call again on Monday to get a follow up appointment. He is now wearing those lovely white stockings and elevating his feet. This was not how this weekend was suppose to go. We are both just tired of this. Oh well we will keep on trudging through. I have been following the blog of the parents of Layla Grace. Unfortunately this little one went to heaven on Tuesday after a valiant fight with Neuroblastoma. I guess Jason's legs retaining fluid is not much compared to that. Tomorrow Ronan and I will join with families around the world to participate in a balloon release to celebrate the life of an angel on Earth. All being said I will hug Jason and Ronan both a little longer tonight. Give thanks for what you have.

Kimmy

Insert title here

So, last Friday we had a scare. Jason woke up with pain that he said was like what he had when this whole mess started. I emailed the PA and we went in on Monday and had a blood draw. The tumor markers are still with in normal range, so sigh of relief, its not cancer. So now the problem is what is it. They think it might be feeling coming back into areas or just a shift in Jason's center of balance. He is taking Ibprofen for swelling and some pain med. If it is not better in 3 weeks when he has his 2 month scans they will reevaluate. Other that we are okay. I am currently searching for a car and planning for Jason's and Ronan's birthday parties.
On a different note it seems when anyone now has a cancer diagnosis it just hits me hard. Please lift the family of Layla Grace up in your prayers. She's a little one who was diagnosed with stage 4 neuroblastoma. She is quickly approaching the end and her family needs all the strength they can get. You can read her blog at http://laylagrace.org.
Kim

Scan results and more!

OK, so Jason went in and had scans redone on January 19th and 20th. The results are in and he is still in remission. The tumor markers are still at 0, or in the normal range. The big tumor is whats called cavitating lesions, basically meaning that it is collasping in on itself and disapearing. There is a 1 cm something on his lower right lung. They do not know what it is. It goes to say that it is probably not cancerous because his tumor markers are still normal. They will watch it and we go back for scans in March. If it has grown they will biopsy it or remove it, if it has resolved, stayed the same, or shurnk we will just keep an eye on it.
Jason went to physical therapy last Monday to start working to get strength in his hip and lower back. Unfortunately we think he might have messed up his right knee and hopefully we will find out more this week.
Jason and myself are looking for jobs, Jason full time and me part- time. So if you hear of anything let us know!
We went to Austin this weekend for PaBill's 80th Birthday party. It turned out well and I think everyone had a good time. Well , we have physical therapy again tomorrow. Can you believe it is already February. Time goes so quickly.
I'll update more later!!!
Kimmy

I have not abandoned you!!

So, I have not posted since we got the news of Jason being in remission. So far still good, we go back January 20th for test and then the 21st for results. Keep praying for us for the next 10 years or so.

I really just wanted to let you all know that we had a wonderful Christmas, we went up to Austin the weekend before. We went to church with Gracie, hung out with Grandparents and Aunts and Uncles. It was a good time. Christmas was awesome this year. It keeps getting more fun the older Ronan gets. He was opening presents on Christmas morning and when he got through unwrapping one he would stand up and say more while doing the sign for it. It was way cute. We also had a fantastic New Year. We had a little get together with some friends over. Set off fireworks ate good food and just got to relax.

Our friends that we asked you all to pray for got the good news that Dave is also in remission. Please continue the prayers for them as well.

With the welcoming of the New Year I took a few minutes and thought about what really happened to my family in 2009. Im not just talking about Jason, but my entire extended family..then I take a deep breath and smile...because we survived it all.
I like the quiet that my life has gone back to. Thinking about putting Ronan into a Mother"s Day out program a couple days a week, Jason and myself finding jobs. I like that the most pressing matters of my day are trying to start potty training Ronan and getting him ready for his "Big Boy Bed.".
In 2009 as in all years past and future God is good, the trick is believing that in the worst of times as well as the good.
I'll leave you all until the 21st with best wishes to you and yours for a fantastic year full of wonderful possibilites.

Love you all, Kimmy