Best Anniversary Present Ever!

Jason had scan yesterday. I was going to go down there with him, but as usual, life had other plans. Ronan got sick Tuesday night, by 1am I had had enough and took him to the ER. Well Roo manage to keep throwing up through two rounds of Zofran and finally ended up with and IV Zofran and fluids. Six hours later we left and dropped Roo at my parents house for Jason and I to get some rest as we had both been up over 24 hours at that point. Long story short, Ronan wanted me to stay with him and Jason went down to MDAnderson alone. Side note: Ronan is on the mend, he is not 100% yet but getting there, now just hoping we don't get it. Jason called me this afternoon with what could be the best anniversary present ever (our 8 year anniversary is the 28th of this month). Dr. Nieto told him that after the appointment he is discharged from the Stem Cell Department. That, wait for it..., he considers Jason CURED from the testicular cancer! He will still have follow ups with Dr.Tannir and is under surveillance from the leiomyosarcoma, but from his view point their is no worry of recurrence. Oh, and even more the avascular necrosis (dead bone) in his hips is improving! There are not enough exclamation points in the world for this!! On the phone with Jason when he was relaying this news I could hear the fact that he was dumbfounded. I felt the same way. We have been dealing with this cancer in some form since 2008, Ronan's entire life, I cannot describe the myriad of emotions that are running through me, most I cant even put a name on. This is amazing, it is a day that I never really thought about, I never thought about what I would be feeling when we wouldn't have this cloud hanging over us, threatening torrential down pour every 2,3,6 months. Gracie,(my oldest sister)said something along the lines of every chapter has an ending. No matter how excited we are over this news, it is surreal. That chapter has been open for so long it's like I don't know how to close it, or better yet, I don't quite believe that they are telling me I can. I am looking forward to Jason coming home I wanted to reach through the phone and hug him. If it is this amazing to me, I want to see the wonder and relief on his face. Jason's Journey is not ending, but maybe, just maybe, the heroes get to take a well earned break before the next epic adventure. Love to you all~ Prayers always welcomed...Kimmy

So long sarcoma.. we hope.

Last Tuesday we went down to Houston for a full day of scans for Jason on Wednesday and then results on Thursday. Literally all day at MDAnderson. We had not had to that in awhile, luckily I had school stuff to study and Jason is magnificent at sleeping. We met with Dr. Satcher early Thursday morning. He said that everything still looks good. No sign of recurrence for the leiomyosarcoma. We talked about Jason starting physical therapy and how Jason is still walking with a cane and has an incredibly wicked limp. He said because of the way that they had to, for the lack of better words, open him up to re-sect the tumor, that he would more than likely always limp on that side. Oh well. A limp versus tumor, limp for the win. He seems to like where he is going for physical therapy, and they are concerned about the way his ankle rolls in when he walks, so they have my vote. This next month and going into the summer is going to be incredibly busy for us and exciting at the same time. I graduate next week from Texas State, Roo will have finished his first year of schooling and will be a Kindergarten graduate, and Jason and I both will be going to summer school. Jason will be continuing to work on his undergrad degree and I will start graduate school. All this while looking for a grown up job for me! Another day in the life of us.. As usual, I will update when there is more news. Jason does go back for scans in June for his first cancer, we will see then that the testicular cancer is still in remission. This August will hopefully mark four years in remission!!! Prayers welcomed!~Kimmy

Aspie Awesome

Last week I took Roo to the Neurologist after a long inner debate on whether or not I thought we needed to. Well it took almost two months for the appointment to roll around so it gave me even longer to make the decision that it needed to be done. Part of it was courage given to me by one my friend, whose son had recently been diagnosed similarly, to gather the cajones to make the call. I made the decision part to the dismay of family members and even the skepticism of Roo's Dad. But sometimes a mom does know what is best for their child. I got confirmation of the diagnosis I had thought was heading our way. Asperger Syndrome. I wanted a diagnosis to be able to get Roo the intervention he needs to be the most successful that he can. That is really the job of any parent. It also was almost a sigh of relief to know that some his behaviors were not just to piss us off, but literally because he did not know any different. Now for the technical portion of our program... Asperger Syndrome (as it applies to ROO!) is High Functioning Autism without the language component. He does not have any intellectual delays, he has issues with social situations, and sensory issues, intense interest or focus on subjects (for Roo it is SNAKES), repetitive behaviors (food cannot touch, he will repeat words until you verbally acknowledge that you heard him),he is clumsy, strict adherence to a schedule, there aremore quirks but that's about all from the top of my head right now. Let me reiterate, this is as Aspergers applies to Roo, not other children on the spectrum or other children with Aspergers. He will not be in special education classes, infact he excels in math, he will need occupational therapy and applied behavior analysis therapy to address some of the above issues. We need to work with him on social situations and things to do and not do, like if you want to make friends you don't walk away from people when they are talking to you because you only want to talk about snakes. The best person right now to compare him to is Sheldon on the BIG BANG THEORY. Please do not let this make you think differently about Roo. He is an amazing child whose quirks make him who he is. He is a brilliant, affectionate, caring, rambunctious little boy, who will make you smile all day long if you give him the chance to. I would change the name of this blog if I could. It is a long road ahead of us as J and I learn how to navigate our lives with the added bumps, but Roo is worth every single second of the journey. Prayers and questions Welcomed~Kimmy

Round Four Win.... Goes to Jason.

Okay so good news or bad news first? Always start with the good, it can distract you from the bad. The good news, the tumor and subsequent bone they took out pathology came back and the bone and muscle pieces had clear margins! He is walking a bit better but is still on crutches for a while. And now for the bad news. The pathology came back as leiomyosarmcoma. This is a cancer that arises out of smooth muscles, it can happen to anyone but Jason's is related to his prior radiation to the area. His earlier cancer was germ cell based and those cells are considered very primitive and can form into any number of things if they feel like it. These choose to turn into smooth muscle cells and cause us some problems. It is a low grade malignancy and we caught it very early. Fingers cross that the only treatment he needed to receive was the surgery. As of now no chemo is expected to be had. We are back to going every three months for scans for this. So this is round number four of cancer for us, we've had worse news. Jason is in good spirits, he says round four went to him! I'm okay, always the worrier. We also took Ronan to see a neurologist and got some questions answered about our ball of awesome, but that post is for another day when I don't have to be up at 3 to get ready for work! I'll post more tomorrow about Roo. Hope everyone has a fantastic valentines day! Remember valentine is not just about romantic love, it is about friendship and loyalty. All of you guys reading this are our valentines! Love you all for the support y'all give. Prayers welcomed~Kimmy

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

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

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