Christmas has come and gone....

Well we had a pretty quiet/ busy Christmas. Apparently whatever bug that Ronan,my MOm, and my sister had decided to hit me too. So wheneber I am within 3 ft of Jason I am wearing a mask, washing my hands constantly, and sleeping in the other room. OH well. Poor Ronan was still sick on Saturday so we actually took him to an after hours clinic and they said all of his symptoms still point to a virus but that fluid is builiding behind his ears so they did start him on some Amoxicilin. Funny enough out of all of us Jason is doing the best. We went and saw the nurse of Friday and did another blood draw, his counts are still good we just had to do a magnesium infusion. Which took 4 hours to get the medicine to go. GRRRR. Christmas we woke up and my parents and sister brought Ronan over we had breakfast and opened presents. Roo took a nap and then we went to the clinic. Unfortunately Roonan was still contaigous so he had to go back with Mimi and Popi and that did not make him a happy boy, he wanted to stay home and play with his toys. Not much we can do, I can stay away from J and not sneeze on him but Roon cant. They are taking him up to Austin for a few days so that will be good and hopefully by the time they get back he and myself will be feeling better. At some point next week we should hopefully get J into outpatient physical therapy at the hospital. He really is doing a great job this time around. He even made Roo waffles for breakfast on Christmas. Send healing vibes our way. Prayers Welcomed! Kimmy

Christmas time is here............

Well in the house, the weather is a different story. Jason is home! This is so exciting he only stayed the 21 days not 60 like last time. WOHOO!! Yes he is home, however, we did have to be back up at MDAnderson today. He had a blood draw and a meeting with the Physician Assistant. His blood counts all look good, no fever, and he is not taking any blood pressure meds right now. He walked into the house yesterday and is so far trying really hard to keep moving. He is still having some trouble with nausea but interestingly enough it seems to be centered around chicken. We talked and decided that maybe protein is a little to complex for his digestion right now so we are kicking it vegetarian style, well at least Jason is. He has the usual suitcase full of medicine, I actually have to transfuse one through his picc line. Oh well as long as it keeps him from getting sick, Im game.
Ronan is at Mimi and Pop's for right now until his cold clears up. He seems to be getting better day by day, he is giving Popi a run for his money! Mimi is sick but hopefully she will be feeling better soon. A pretty low key Christmas for everyone this year. Thats alright as well because we are all together.
I may not update before Christmas so let me say that my family is so blessed that so many people keep us in your prayers. We would not have made it this far with them. From our Family to yours, have a Merry Christmas and a Happy New Year!!! Prayers Welcomed, Kimmy

Post number 82!

Alright so Jason should be coming home at some point this week. There are a few different things going on with him right now. His stomach is basically being lazy. Its just not digesting food right now. They say this is caused by the chemo and it will just take time to get over. Right now nausea is under control and he is handling a clear liquid diet just fine. He has a blood infection probably from the port again. I dont know why I managed to keep him infection free for the past year with the ports but they cant. Oh well, they are managing that with antibiotics. He is still walking, slowly and not as well as when he went in this time but better than when he left the hospital last time if that makes any sense. He is very ready to get home.
Roo is sick. He has pink eye and a cold. The doctor said the pink eye will be under control by the time J is home but the cold will still be contaigous from 7 days of onset so until Christmas day. If J comes home before then Ronan will have to go visit Mimi and Popi til Christmas. Thats okay for a few years my sisters and I would spend Christmas Eve with our Nana and that was always fun. We would wake up go eat breakfast then go see what Santa had brought us.
We will figure it all out we always do. Just a small update. Prayers Welcomed! Kimmy

This is what I know....

And it really does not add up to much.. HAHA! No, okay so Jason is still extremely nauseated and the meds arent really working very much. I emailed Dr.Nieto last night and because he apparenly lives and breathes MDAnderson I got an answer last night as well. He forwarded it to the Dr. on call. Jason got a chest xray, an abdominal xray and will be going for an abdominal CT scan. I dont really know what they are looking for exactly I can only speculate that it is someother cause for his nausea. So my plans for Arkansas are on pause for today, we'll see what happens and I will update when I know more! Prayers Welcomed! Kimmy

Post number 80

I am so sorry I have not updated this in over a week and Jason is in the hospital. Well here you go. I left last Saturday to come home and take care of Ronan. I did go visit last Tuesday and probably will go visit tomorrow (Sunday) or Monday. He has finally hit nadir (the lowest point your cells drop). His white blood count is 0.0, the only way to go from there is up! He started running a pretty high fever on Friday night and it has continued but has lessend slightly to a pretty constant 100.8. That will happen when you have no immune system. They have him on an arsenal of anitbiotics, anti fungals, antivirals, so hopefully something will work until his white blood cells recover. They are giving him platelets and red blood cells as needed so if you are in the Houston area and can donate blood to MDAnderson please do in Jason's name. His mom is staying with him since Im home taking care of Roo and things here. He seems to be doing pretty good as far as having this treatment goes. Like I said before its alot less harsh than last time but still harsh. He is still having problems with nausean and I think at last count he is on 4 different nausea meds that work most of the time, except you know when he moves. I think the only thing thats going to help with this is time for his stomach to heal and for less meds to be going in him. He seems to be in good spirits, is ready to be home, and working hard to get home before Christmas. Ronan and I are taking a side trip up to Arkansas to visit my sister, her husband, and my nieces. We will do a little mini Christmas up there than its back here to finish up Christmas prep and get the house ready for hopefully Jason coming home! Prayer request today ( or tonight rather) please let whatever infection that is causing J this problem to resolve quickly! All prayers Welcomed! Kimmy
Oh PS. If you are on my Christmas Card list they will get to you eventually but you just might have a Christmas card in January!

Day -5 through -4

Well yesterday was pretty uneventful. J just got the chemo, he felt a little more tired than usual. Physical therapy came in and made him walk. Today hopefully Occupational will be in and there is an exercise class at one I will make him go to. There has been quite a bit of nausea and only one episode of vomiting,so thats good although it was a spectacular episode. Dr. Nieto said that Jason is tolerating this very well so heres praying it continues like that. There really isnt much to say this go around and I would like to keep it that way. J is getting a shower right now so he will smell better! Just kidding. Ronan is doing pretty good considering the circumstances, he is even sleeping through the night in his big boy bed Im told. I miss the little guy and he misses us. Thats about all for now. Ill update when there is more to know. Prayers welcomed! Kimmy

Writing to you from the towers............

Today Jason is beginning his journey through hopefully his last chemotherapy ever!!!! We went to see Dr. Nieto and go J's official height and weight so that they can calculate the chemo. Everyone is happy with how Jason is physically going into this round. He has even dropped a few more pounds of water weight. His tumor markers still remain in normal range 3 and a half months out of his first transplant and is still in radiographical remission. Dr. Nieto said that he believes that this is a cure for Jason. He also says that Jason will not need any surgery to remove any residual masses.
This transplant round will still be harsh but less so than the one he went through. I suppose the other one was so hard that this though still crazy will seem like a cakewalk compared to the first. Dr. Nieto is actually the actin physician on the floor right now so we will have him until next Monday.

We are in room G1157. This is apparently a Bone Marrow Transplant Floor not a stem cell floor so Ronan is not allowed on this floor and hopefully by the time that J could gather enough suppport to leave this floor we will just be packing to go home.

I have decorated the room for Christmas even though Dr. Nieto said he will try to get J home before then. So please send Christmas cards to J here. It will help raise his spirits and make more pretties to decorate the room with. YOu can mail them to:

Jason Elliott
Room: G1157
MD Anderson Cancer Center
PO Box 300206
Houston TX 77230-0206

We are settled in and I have my sewing machine to work on Christmas presents, we have the computer, J will be having physical therapy everyday, they have the exercise classes 3 days a week and I will get him out walking around as much as possible. We dont want to lose any ground and maybe even gain some.

Thats about all for today. Tomorrow we start the chemo!!! Bring it on! Prayers Welcomed! Kimmy

It has begun.....again.

We went today for Jason's outpatient chemo. He had to go and get his official height and weight and it was totally funny watching the tiny nurse getting on the chair to read the measuring stick. He did really well, they had a little trouble find a vein for the IV but got one on the second try. He will be getting the CVC(IV port on his chest) put back in next Monday. He will then be going in Tuesday afternoon to start the HDC. Thats about all for now. He is doing great about not using the wheelchair. I left it in the trunk and that seems to work out just fine. Ronan is doing pretty good. Its amazing how fast he is growing. I swear he wakes up in the morning and he has grown a half an inch. Thats about all for now. Prayers welcomed. Kimmy

Approved

We went to see Dr. Nieto on Thursday and J is doing really good. We were sent on our way because the insurance decision was not made yet. Well we got really good news Thursday evening. The Independent Review Organization sided with us and overturned Blue Cross Blue Shields denial for the transplant! Wahoooo!!! So what that means is now BCBS has to cover the transplant and now J can move forward with treatment. Now on Monday J will be going into to recieve the Avastin (thats the chemo that inhibits new blood vessel growth) and will be going into the hospital on Novemeber 29th with the HDC starting the 30th. There is a pretty big chance that he will be in for Christmas but we will sacrafice this one to have the chance at 50 more!
In other news home physical therapy is no longer coming out and I kind of took the wheelchair away from J unless we are at MDAnderson. I think he is doing so well. It takes a while to get from point a to point b but with every step he getting stronger. It was kind of a blessing in disguise that it took a little longer for this next transplant it allowed Jason to be in a much better position physically.

As Thanksgiving approaches this year, J and I have so much to be thankful for. From family, friends, doctors, to even being thankful for the chemo. We have faced so much this past year and yet I think that we are better people for having faced it. Support from all of you was and is vital to us making it through this together. So thanks to every single one who clicks on this blog and leaves a comment on here or on facebook and who sends up a prayer in our names. Please everyone have a blessed Thanksgiving and slow down and know that its not about the turkey or side dishes its the conversations and family time you get to spend with one another while making it!
Thank you,

Kimberly, Jason, and Ronan Elliott

Insurance Update

We went and saw Dr. Nieto today and were pulled into the financial office. THey got the call this morning that BCBS upheld the denial for the second transplant. Rhat really irks me is that BCBS was given the entire protocol when we applied fo r the first transplant so they were aware of this second one. And the fact that HDC with tandem SCT is the standard of care for relapsed testicular cancer that has surpassed first line therapy. GRRR!!! To me its like okaying a heart transplant and then stopping the surgery and say oh no, we didnt approve sewing them up you will have to stop! GRRR again! Dr. Nieto and MDAnderson are filing the appeal with IRO and hopefully we will know something in the next two weeks. If they uphold the decision as well then we go to either self pay or apply for the MDAnderson financial assistance program. I know J and I will qualify. So thats where we are....which is no where really. We know Jason will have the second transplant before the end of the year. Please pray that IRO finds in our favor! Prayers Welcomed Kimmy

Oh J is doing really well. He is progessing in his therapy and blood count wise everything looks great. Looks like he will get another two weeks to continue to get stronger!

Bring on the rain..........

Well our anniversary was very low key this year. J had therapy and we all went and picked up Olive Garden (fancy I know). It was just good to have him home. Halloween was fun kind of. Jason was feeling under the weather so he stayed here with his mom. I took Ronan over to my parents house and we hit a few houses in the neighborhood. Ronan was really getting into it and he was the cutest Lightning McQueen ever! He got two pieces of candy at a house and he says"I have lots of candy" We all need to adopt that attitude. On Wednesday we had to go take and get J's CVC removed because it came back positive for infection. THis would explain his generally feeling lousy. And of course another anitbiotic. They will replace the line before his high dose chemo.
Yesterday I ended up taking J to the Er. He was still having a low grade fever, lots of drainage, coughing, and wheezing. We took him and basically it appears he has a cold. Chest xray was clear, he did a breathing treatment and his breathing improved. They did a nasal swab so we will see if any viruses show up on that. So they gave him another antibiotic and an inhaler and sent him home. He seems to be doing a little better today.
Now on to other news. Jason's second transplant was denied by Blue Cross Blue sheild as being investigative, experimental and not proven to be safe or effective. So now MDAnderson is appealing this and we will be appealing through IRO ( Independent Review Organization) with the Texas Department of Insurance. Hopefully it will work otherwise we have to self pay upfront for the cost of the transplant. Roughly $147,000. So prayer request...please let the insurance company change their mind or for the IRO to rule in our favor. Prayers in general please.. Prayers welcomed. Kimmy

Updated....

It has so far been a pretty interesting time with Jason being home. He has been having a lot of nausea that seems to be related to moving around. Dr. Nieto changed his nausea meds, he upped one and added a motion sickness patch. Well on Friday Jason started seeing flashes of lights in front of his eyes, started hallucinating, and there was quite a bit of mental confusion. It was kind of funny if it wasnt so sad. He seems to be better now well at least he isnt trying to pick up non existent cookies off the floor(insert joke here). We went to the Dr. today, he is doing very well, we just wish that Physical and occupational therapy were doing better. We did a few extra tests to see if maybe J is having some sort of infection because he has been feeling kind of puny and has been running a pretty constant low grade temp. Hopefully we will know something soon. We got the news that next week Jason will have his dose of Avastin (this is the chemo that inhibits new blood vessels from forming to inhibit tumor growth) and then the next Friday (the 12th?) He will be admitted to start the second HDC. That means that he will be in the hospital for Thanksgiving. Oh well turkey travels! Hopefully that means he will be out for Christmas. We are debating taking a little side trip up to Austin next weekend, I suppose it all depends on how J is feeling when it comes closer. We are learning that our plans need to be very flexible.
Ronan is doing good, although I wish the child would not run from the potty! Its making if offly hard to potty train him when he uses it as a stool. Im doing alright. Just trying to keep all the balls in the air and figure out which one needs to come down first. Prayer requests that J continues on this good trend! Prayers Welcomed! Kimmy

Dr. visit

On Monday J went and had the Pulmonary Function test and an echocardiogram. BOth results came back very good. There is no decline in either his lungs or heart from before the first round of HDC. They changed some of his meds around. We are dealing with some pretty wicked nausea. It seems whenever he has to do something physical or he gets hot the poor guy ends up vomiting. The dr gave him a different med a patch behind his ear that is actually for motion sickness. So far its helping. All of his blood counts numbers are excellent and he really is in better condition now than he was before transplant. Dr. Nieto is very happy with his progress. The only tumor marker that was elevated this last time is almost back in normal range so this is exciting. We are waiting on physical therapy to come out and work with him still. We had thought about changing to therapy at MDA but for insurance purposes apparently we can get more visits at home. We go back to the Dr. next week and then they will probably decide when to go ahead with the next round. We want to give J enough to get better but want to keep a short enough time between them to make it the most effective. We have a pretty busy weekend coming up hopefully it will be fun as well. This is a short post but I have to get to bed. I have turned into an isomniac. Its 2am..Roo will be getting up in 5 hours....Prayer request for this week physical therapy decides to show up! Prayers Welcomed! Kimmy

A day in the life..........

Alright so we had occupational therapy come out and do an evaluation on Wednesday. J has his first meeting with them tomorrow. Apparently Physical therapy will get to him next week. I am not happy about this and will be talking to the rehab doctor on Monday when we go up to MDA. J's power port is missing a stitch (I have no idea how they managed to miss this when they were changing his dressing but they did) he also has the pulmonary function test and echo and the dr appt on Tuesday. J had a rather graceful fall on Wed. His knee just gave out and luckily I was behind him and we just kind of pushed him up against the wall and let him slide down. We went and got an ankle brace for me today. Its just not doing any better. We also got the slightly smaller wheelchair. This makes it a little easier to manuever around the house. There are angels all around when you are not looking. We went to get the wheelchair today and Jason got sick in the parking lot so I left him in the car (with it running) and took Roo in to get the other wheelchair. Well like a kid in the candy store with all those motorized wheelchairs around it was a handful trying to get the paperwork done and keep Ronan from driving around the store. There was an older couple there working on getting an a lift chair and the woman asked how old Roo was I told her 2 and 1/2 and she said yes I can tell. Will you let me entertain him for a few minutes? I said of course!!! I was able to get everything done for the new chair, Ronan made a friend, and J was taken care of!! Thanks for the short visit from the angels!
On a different note my sisters' and my etsy store is slowly gaining some speed. This is exciting to finally get something going with all three of us. Check it out and yes I am shamelessly advertising still!

www.etsy.com/shop/buttonworksdesigns

Prayers Welcomed!!!Kimmy

It was a good weekend

Friday J and I made it home finally and just kind of go settled. We went and met Ronan, Mimi, and Pop at the pumpkin patch. We got pumpkins, Roo jumped in the bouncy house. We then topped it off with a trip to Old Time Soda Fountain. J and Roo shared a milk shake and we had their great hot dogs! After that Roo and J were both ready for a nap and to tell you the truth so was I. Today (sunday) we met Mimi and Pop at the Park for a Pizza Picnic. That was alot of fun. J got to see how much Ronan had grown with climbing the ladders by himself and so on. My allergies are horrendous. I am so over ragweed and grass pollen. It needs to freeze all ready! Home health came by on Saturday and I gave them a list of Jason's meds and signed a bunch of papers for the physical therapist to come in next week. Thats about all for now. We are just trying to figure out logistics since J is in the wheelchair. He can walk but only for very short distances it will get better in time. Three weeks ago he couldnt get out of bed so he is doing great. It was a great weekend! I think we are all happier than we have been in awhile. Prayers Welcomed! Kimmy :)

REMISSION ACCOMPLISHED!!!!!!!!!!!!!!!!

There are not enough excamation points in the World for how excited I am today. One- we finally got to bring Jason home. After 58 days in the hospital, high dose chemo, stem cells, a trip to the ICU, losing the ability to walk, regaining it. WE ARE HOME! Us and a slew of medications but we are home nonetheless. On to the next news. They went a head and did the MRI scans last week and we got the news that Jason is IN REMISSION!!!! All cancer in the bones seems to be shrinking and disappearing! Yes we still are going ahead with the next cycle still but this is absolutely the best news we could have hoped for. All I can say is thanks for the prayers guys! We will be having physical therapy at home so we dont have to truck all the way back down to MDA and we dont have to be back up there until the 18th!!!!
Now on to other bit. Our poor Roo has an ear infection:( He is on antibiotics so he should be feeling better soon. My allergies are going crazy but that is okay because my family is back together. Prayer request this week is for health mercies for the whole family! Prayers Welcomed! Kimmy

Forgot to put a title the first time!

J saw the Dr. today and we are still a go for discharging this Friday!!!! Wahoo that will be a grand total of 58 days in the hospital. He did an amazing job of not going stir crazy. (just a little crazy in general). I saw him walk on Monday and he is trying so hard. He is down to 300lbs ( he is 6ft 8in) from the 360lbs he was up to because of water weight. That in itself is amazing. He did however lose A TON of muscle. That will come back with work.
They did go ahead an restage we havent talked to a Dr. about it, but from what I gather on the reports there is no new signs of cancer, the fractures are stable(not healed but no progression) and that because his disease was so hard to spot anyway on the scans it seems that something is going on in his pelvis and sacrum posttreatment but we are just not sure what. Since all of his fractures are stable Im going with the disease is going away until told otherwise. His spirits are great now that he is coming home for a bit. I know we will be back up often but it will be nice to have the family back together. Prayer request for this week, please let everything be an easy transition for J and for a speedy resolution on a private family matter! Prayers Welcomed. Kimmy

Target discharge date 10/8/2010

So like the title said target discharge date is this Friday!!! I dont know how long he will be out before he will be back in but like Scarlett said Ill think about that tomorrow. He will be coming home in a wheelchair while he has made a ton of progress quickly he is not quite up to snuff out of the wheelchair. What this means is that the tiny door to our bathroom has to be made bigger along with a wall removed..in the next 2 days! I went and stayed last night with him and when to physical therapy this morning. He walked 25 feet!!! in two increments. However it takes 2 people not including himself to him up and three people not including himself with the walking henece the reason he is coming with the wheelchair. He will still have physical therapy to work on the walking and getting up and such. Thats about all for now!!! I will update more later Im kinda in a hurry! Prayers Welcomed! Kimmy

Woo D Woo!!!

Sorry I havent updated in a week. I took a break and went with my Mom, Dad, Sister, and Roo up to see my other Sister and celebrate our niece turning two!!! It was fun. Little Rock is actually very pretty, however I dont think Arkansas agreed with my allergies in the slightest. Now on to the crazy important news. J WALKED!!! He is using the parallel bars and they lock one leg while he swings the other but he is up and walking. Today he made it three "laps" on the bars. They want him proficient on his walker before they send him home. He needs to be able to get around the house walking. Our house is just not built for a wheelchair. He could get in the door and move around the house but the wheelchair will not fit through the door to our bathroom. Ronan and I went up today and ate lunch with him. He is looking so much better. Most of the water weight is off! He is left with a ton of stretch marks on his belly. I told that was okay, he could match me. I had Ronan and he had a water baby! We are very excited and I am so proud of him. He has come a long way in a very short time. Tomorrow we should be finding out if we get to keep the discharge date of this Friday (which is October 1st by the way...where did September go?) I hope we do. We all miss him and want him home. I got the paperwork to get him a handicap placard and the physician signed the waiver for the compassion clause for filing for SSD/SSI that waives the six month waiting period. This is good news. When J gets out I have a couple family things planned like going to the pumpkin patch and making some yard stones. I think we might be celebrating mine and Jason's four year anniversary and Halloween early this year if he has to go back in for the second round of transplant. Oh well, no complaints here! I love me some candy!!! Oh go check out my sisters' and my ETSY store. Go to google type in buttonworks designs and we should be number one on the search!!!! Prayers Welcomed!!! Kimmy

Will the real Jason please stand up?

And HE DID!!!!! Yesterday, Jason stood up for the first time in 35 days. I am so proud of him. He stood up and down a few times with help for the physical therapist. They are working him really hard using different machines down in the gym. He is really improving quickly. I am so excited I'm giddy. They are actually talking of a discharge date for next Friday!!!!! Jason is very happy. I went to Sweet Adelines on Monday and it felt so good to take some me time. Also they are kind of like my therapist so I really needed a visit. Ronan is doing okay. His stuttering is getting more noticable. He is pinching, hitting, and biting. Its hard to tell if this is an age thing or if he is acting out from stress. He also occasionally has random crying outbursts. They are sad, he looks as if his whole little world has fallen apart. Which in a way I suppose it has. I am looking into options for therapy for him but its alittle difficult because of his age. We'll just keep loving him! Prayer request...That Jason continues to improve and for me to have patience! Prayers Welcomed. Kimmy

And he's up....well 80% at least!

They moved Jason to the rehab floor and he is doing grreeeat! (<--- Tony the Tiger voice) He is getting up and dressed every morning, doing physical therapy, group therapy, and then occupational therapy. They have respiration therapist coming in like 3 times a day to help keep his lungs open. He is doing so good on this floor. Unfortunately he will be in at least next week and hopefully released the next week. Physical therapy got him on his feet and about 80% of the way standing. This is very exciting to all of us and even more so to J, he hasn't been able to walk in over a month! You can hear the difference in his voice and its a good thing to hear. By request I made him some sheppards pie and took it up to him on Thursday. I had planned to stay the night however there was no room in his room. I fixed him a plate (he ate 2 slices) and then let him rest and went home. The really good part of this story is that he rolled himself in the wheelchair to the little kitchen on the floor and got himself some left overs today for lunch!!! I am so proud of him I could just fill up an entire page with exclaimation points!!!!!!!! But I wont because that would be annoying for you all. Roo and I are going to take something different up to have dinner with him tomorrow. I think Pumpkin Pasta is on the menu.
On a completely different note my sisters' and I have finally opened an ETSY store. For those not in the know ETSY is a commerce website alot like EBAy but only features handmade and vintage items. Go check out our store http://www.etsy.com/shop/buttonworksdesigns. Let us know what you think or even better Buy something!!!

That was my commercial. I am in a much better mood now that Jason is in a better mood. Here's to getting him up and moving so we can get going on the next phase of things. Prayers Welcomed! Kimmy

Moving floors........

Alright guys... I have been insanely busy trying to get all the ducks in a row for Jason to come home. Unfortunately, it will not be this week :(. However, they are moving him to the Rehabilitation floor. Here he will three hours of physical and occupational therapy a day along with nurses who will help do therapy at other times. I am so excited by this. I finally saw him do some therapy today and it is so hard watching how much he struggles to do the simplest things that I take for granted. I literally watch the strength drain out of him when he moved from the bed to the wheelchair. On the other hand I am so proud of how determined he is. He is making progress everyday. They are switching him over to all oral medications he is eating and drinking however he needs to do more of both. Only time J has ever been told to eat more! We got the carpets steam cleaned, the tile floors clean, and the air ducts cleaned. Our house looks great, J wont even recognize it when he comes home. I took a look at his blood work today and everything is looking very good. He is pretty much back to where he was before the 4 hour nose bleed on Friday. I hope he gets to come home soon. Occupational therapy is working with him really hard to get him whatever equipment he needs to help with daily living. This is great, some his new gear my Dad wants! Hopefully when this is all said and done J can give it to him with a smile on his face! Prayers Welcomed! Kimmy

Rollin, Rollin, Rollin...........

Alright, so for those on facebook know that yesterday Jason made it from his bed to the wheelchair!!! He did a lap around the nursing pod. Wahoo. He did it again today and even started pulling himself along with his feet. Hopefully there will be a discharge date of next week. Ronan and I are so ready for him to be home. His spirits are lifting and Im sure that has to do with him being able to get around a bit more. As for the home front myself and my family are working on decluttering, reorgainzing the house. That is almost complete, then its on to the "deep cleaning". I only have til MOnday to get this done because the steam cleaner/air duct/ tile cleaner people will be coming. Nothing makes me more productive than the last minute! Also to top everything off, the master cylinder and slave cylinder have decided to caput in my car. Thats car talk for my clutch goes to the floor and wont come back up and it wont come out of neutral. The good news is that when I took it in apparently there was a recall item on it and that will be fixed and of course they kindly remind you that the timing belt needed to be changed at 90000. Oh well what can you do. However I will vent for just a second. Mr. Service counter guy is it really necessary to act like I dont know anything about cars? Here is how the converstation went. Daddy and I were sweating because we had to tow the car to the dealership and well Daddy's back was hurting him so my one legged gimpiness got on the ground to hook up the cars. When we got to the dealership one of the service guys told my Dad that there was water in the fridge. Daddy goes to get us one. While this is happening Mr. Service Counter guy asks me whats wrong with my car. I tell him that the clutch decompresses to the floorboard and wont come back up unless you pick it up and that the car will not shift out of neutral. His reply "Is it a standard or automatic?" Im laughing on the inside because in automatics one doesnt decompress the clutch themself. But I reply " Standard." He looks at me bewildered and says "You drive a standard?" To which I reply " Oh no I cant. Maybe thats whats wrong with it." Unfortunately he was one of those guys who did not quite cotton on to my sarcasm. The car is in the shop and they are going to fix it I suppose that is all that really matters. Then after this is fixed I can take it to go get the body work done from the wreck we had in April! Oh the fun of automobiles. Funny Ronan story, we were watching cartoons and the character on TV wanted to take their little sister back to the "baby store". Ronan then asked me if he could go to the baby store, he wants a little sister. My reply, "YOu'll have to share your toys with her." He says "No, I dont want to go then." I love my lil guy. I go up to see Jason tomorrow,then its back home on Saturday to clean! Continued prayers for Jason's improvement. Prayers Welcomed! Kimmy

Because one mobility impaired person in the family is not enough...

We had a fantastic garage sale! Thank you Austinites!!! Thank you for the donation of items and for coming and buying. Also a huge thanks to Uncle Kenny and gang for the selling hotdogs and keeping the workers fed. The weather on Saturday was perfect, could not have planned for better. So as for the title. Well for those who actually know me, know how entirely graceful I am so it might come as a big surprise that I did a faceplant in the parking lot. Shocking I know. So I now have a very sprained ankle ( it comes with its own multicolored decorations) and a bruised knee. To top that off, when I thought I was in the shade, I was apparently roasting the inside of my leg. I have a wonderful air brace shaped burn line and have sunburned the leg so bad it has blistered. Go me! Its not comfortable in the slightest.
Now on to Jason. I went and saw him this afternoon ( I am staying at home a bit more to get the house ready for when he can come home). He looks so much better, he sounds like Jason, however his hands are peeling from the chemo and it looks really bizarre. He is still not up and walking yet but he is sitting more on the side of the bed. I think that physical therapy needs to come in twice a day to work with him. Im going to email and find out if this is possible. He is very ready to come home and this is what is holding him back. He is eating but unfortunately everything he eats does not taste the way its supposed to. I brought him in a slice of chocolate cream pie , he took one bite and said it tasted like charcoal. Of course it didnt but thats how off his tastes buds are. Although one does wonder when he has tasted charcoal. I plan on staying home tomorrow and working on the house. Everything takes 5 times longer because of the ankle. Jason has requested I bring him homemade meatloaf, mash potatoes, and Italian Wedding Soup. I suppose I will be taking those up on Thursday.
Ronan is awesome! Its great because you are beginning to be able to have more of a conversation with him. At the garage sale he was telling people hello and just having a ball. Thats about all for now. Today's prayer requests is for added physical therapy for Jason to help him be able to rebuild strength faster. Prayers Welcomed!!! Kimmy

Not feeling creative at the moment....

Today was September 1. Jason has now been in the hospital for 3 weeks. Wow...so much has happened. The good news is he ate about a 1/3 of a bowl of cream of wheat at breakfast and a bowl of mac and cheese at dinner. Thats more food than he has had in the past 15 or so days. Physical therapy came in and did some strength training on his legs and arms. Occupational therapy came in and made him bathe as much of himself as he could. He needs to start asserting some independence. Tomorrow they will put him on the tilt table again. I asked him after he got snippy with me about doing his breathing exercises if he really thought he was trying his hardest at getting up and going. At first he said he did , then he said no that he could try harder. We had a talk today and I told him that the only thing keeping him here now was himself. That I couldnt make him walk, eat, and drink. I would do if for him in a sec if I could but this stretch is all about determination. I think tomorrow he will try to push himself a little more. I can understand how easy it is to get down when you are stuck in the same room for all this time. I suppose its just one of those days for him. On the other hand he got to see Ronan yesterday and both were very happy about that. Ronan was cutie as usual giving hugs and blowing kisses to the nurses as he left the floor. Tomorrow I am going up to Austin for a few days to help with the benefit garage sale. I feel really guilty leaving J, but everyone keeps assuring me it's okay to leave him here. I suppose we both are just ready to be out of the hospital. Dont fret, Im not as down as this post sounds, just as usual I have a lot of stuff on my mind. Prayers Welcomed! Kimmy

And he is up..kind of.

Alright, physical and occupational therapy came in today. They got J up on a tilt table. He did so good, they were only able to get up to 50 degrees but throughout the entire time his blood pressure remained steady. While he was up on the table they got him doing so arm exercises as well as resistance band exercises for his arms. He lasted about 20 minutes, they will come in and do this every other day and the days that he does not do it he will have leg exercises in the bed. In other news he keeps spiking a fever then it will go away then come back. His blood test this morning did show a possible fungal infection. They adjusted his medicines by adding another anti fungal and drew some blood to culture out. We will know if it is a lab error or an infection in a couple days. He is feeling kind of cruddy today but I am so proud that he got up and did the exercises anyway. Now if I could just get him to eat something...Thats about all that I have for today. Oh and a friend of ours daughter is having some health problems, please add Catelyn to your prayers. Prayers Welcomed! Kimmy

Oh and a reminder that the Jason's Journey Benefit Garage Sale is in Austin on Saturday at the South Austin Church of the Nazerene. 8am to 3pm tell all!!!

Rapid improvement...

I went home Friday afternoon to try to get things taken care or ahd spend time with Ronan. Jason is rapidly improving. He apparently was able to eat a fudge pop and some mashed potatoes. He says he is feeling so so, but better each day. His throat still hurts. He did try to stand up yesterday but was unable to, so they will continue working on physical therapy exercises on strengthening. There is no discharge date but Dr. Nieto is saying on the happy side end of next week but he is more set on the week after. They will let us know so that we have plenty of time to get things at the house in order for him. When I talked to J he was in pretty good spirits since I told him a Texans vs. Cowboys game was on! I will probably not see him until Monday, I have to get the house a little more in order. The Garage Sale is looking to shape up into quite a sale. Lots of families have donated items so there should be something for everyone! For those that dont know the benefit money that was raised here in Houston is tax deductible because it was run through a 501 C 3 account unfortunately/fortunately we can only use this money for medical bills not household expenses or the like. That is why they are putting on the sale in Austin. I want to thank everyone for the prayers and ask that they continue. We still have a huge journey ahead of us but at least now we have started. Prayers Welcomed! Kimmy

Might as well join him!

I am sorry for not being able to update but for some reason I cannot get the laptop to connect to the internet in the room that we are in. Jason is now moved back on to the Stem Cell floor. Each day he is showing improvement. He now has a white cell count of 2.1. This is awesome! However we are quite a ways from being able to go home. He is still not eating and is barely drinking. He has started back taking some of his meds orally and not just IV. Physical Therapy is working with him to gain some leg strength back. He sat up for about 10 minutes today and that was all he could handle. His skin wounds are healing so thats good. The down side is his mental acuity is still pretty off. Its sad but at least he is entertaining. He bounced a pink bucket up and down on his head, used his suction device as a wand, went fishing with his morphine pump. So its quite a bit of work to try to reorient him. The doctors say that they have seen this before and that it will get better. His electrolytes are little off and he is on a morphine pump which is on demand. Morphine has a nasty habit of staying in the system when your kidneys are not in the best shape, so I was wondering if some of his loopy behaviour could also be attributed to a build of morphine. I requested that they change his pump to a different med and try an oral numbing medicine to try to cut down on the usage of the pump. Only time will tell if this helps. As for when he wants to wake up and read magazines at 1 am or watch TV at 5am I ve decide if you cant beat him, join him! He asked me to stay with him one more day this week so I will be heading home tomorrow. Prayers for his mental status to improve and that his overall healing and strengthening continue! Prayers welcomed! Kimmy

For those Austinites the benefit garage sale is 9/4(which oddly enough is the exact day we found out about Jason's recurrence of cancer the first time around last year) its at South Austin Church of the Nazarene at 6711 Manchaca Rd Austin Tx 78745 8-3. There will also be homemade baked goods for sell as well!!! Tell your friends!

Chemobrain

I went to see Jason on Saturday and Monday. He was looking a bit better each day. However he is having a pretty severe case of chemobrain. It makes him out it. The poor guy thought I left him on Friday to go get a divorce. Then yesterday he wanted to know if he could go Schlitterbahn and asked the doctor why his bed was moving up and down by itself.... So again he's alittle out of it. I emailed the doctor and he said that we should expect a full recovery from Jason mentally. His o2 stats and everything are holding their own without added oxygen. He is still not eating but has moved to drinking things other than water. He was moved back to the stem cell floor from the CCU. I am going to go spend a few days with him. Ronan was amazing as usual. He misses his Dada. He keeps asking where he is. Hopefully just a couple of weeks if that long. We know he will be in a bit longer due to his stay in the CCU but I dont know how much longer. Prayers Welcomed! Kimmy

CCU....

So you know the post is not so much fun when I really did not even want to write one.....Last night at about 11pm they decided to move Jason to the Critical Care Unit (aka ICU). He was having a very hard time breathing, his blood gasses were low, he was/is so tired and weak from not sleeping, is still having an elevated heart rate, amongst some other problems. I was torn between staying with him and going home for a few days to see Ronan. Jason made up my mind for me when at a time what he was saying wasn't making much sense but as cleas as day he said "Go home and take care of our son!" So I did. Luckily J's Mom came up and is staying with him. I needed a bit of a break and Ronan needed so reassurance that he still had a Mommy and Daddy. I also think J's Mom really wanted/needed a little time to baby J. I did go up and see him for a few minutes today. He is a tiny bit better. They took him off of a NOn Rebreather oxygen mask (allows for higher oxygen concentration) and put him on the nasal cannula. His heart rate is still elevated but it will do that under times of acute stress (aka having a difficult time breathing!) They did not like the fact that his blood gasses are still low. They did transfuse a unit of Redblood cells and 2 units of platelets to try to help him with breathing and stop his random bleeding respectively. The cultures did come back positive of pneumonia so luckily he was already started on those meds yesterday. Thats about all I have to report because thats about alll that was passed to me. I will update as soon as I know more. For all my Austin Peeps! My family so far is organizing a garage sale on September 4th from 8-3pm at 6711 Manchaca Rd (South Austin Church of the Nazarene) Come out and shop!!!

Please pray for Jason to over come the pneumonia and the cocci infection and be able to go back to the regular floors quickly. Also please for strength for Ronan and myself. Prayers Welcomed! Kimmy

Yesterday seems like a week ago. Well yesterday I finally cracked and became a little overwhelmed. Turns out that will happend when I try to do the Nurses, Nursing Assistants, and Housekeeping jobs. The two nurses we had were great! We had them again today and I think we will have at least one tomorrow. Tonights nurse is cool so far. Jason was finally able to start taking sips of water and keeping it down. Wahoo for small blessings.
Well things today have not gone so smoothly. I was going to go home to Roo today but Jason was still having problems breathing. This morning during vitals he was having a pretty severe bout of Tachycardia (fast heart rate). They did a 12 lead ekg came back normal, they did a ct angiography to see if there were any blood clots. That came back negative for blood clots but did show some areas suspicious of infection. So they proceeded to do a bronchcoscopy. Put J to sleep, inserted a camera on a bendy tube down his throat to get a picture of his lungs. They flushed with saline and then sucked it up to see what they can find out on cultures. Speasking of which his blood culture from yesterday came back positive for Cocci which I think is a form of staph. They now have him on 4 antibiotices, 1 anitviral, and 2 antifungals. Ontop of all his other meds. Doesn’t sound like too much fun. He is getting a platelet transfusion, has an oxygen mask on, got a breathing treatment, arterial blood draw. Now he is sleeping. J was also evaluated by a nurse from the Critical Care Unit (ICU) to see he warranted higher nursing attention or if he would benefit from moving to the CCU. The nurse evaluated him and decided to just watch and see what would happen. He talked to Dr. Nieto and discussed J’s case, Dr. Neito argeed!So, just another turn on our Merry Go Round of life!
Tomorrow I am going home after Dr. Nieto sees Jason. He really is a great doctor. Well keep on healing!!!Prayers Welcomed!! Kimmy

Nosebleed section is located in Room G1178

I really, really do not like it when blogspot eats my blog before I can save it....
WARNING: This post contains a bit of detail. If the the though of a nosebleed grosses you out, I suggest you pick up on tomorrow's post.

This morning I ordered breakfast off of J's menu because honestly he wasnt going to eat it (this is starting to give me a complex though). When it came I ate and proceeded to watch the door open for Dr. Nieto and team to come. As they are opening the door J sneezes and WHOA NELLY! J's nose starts to bleed. He literally looked like something out of a war zone. The team did their evaluation and and ordered some platelets for J. The nurses packed it with gauze and some thrombin(clotting factor). This did not work. Neither did pinching his nose for 20minutes or applying ice packs. An ENT finally came and saw him and put this straw gauze (like 8 inches of it..apparently the sinus' are cavernous) soaked in numbing medicine in both nostrils. After he was numb they put gel foam on one side and cauterized the bleed on the other side with Silver Nitrate.(that is kind of cool, no fire needed!) It finally slowed down enough after 4 hours of a nose bleed. They did get platelets and transfused those around 2pm. He finally got up and got a shower. They also ordered a chest Xray because he had so much fluid around the heart that they did not want it to progress to congestive heart failure. The nurses (who are the fabulous Debbie and Jody today) drew another CBC because J loss probably a pint and a half of blood. We need to see if he needs any Red blood cells as well as the platelets.
Dr. Nieto came by and said that the chest xray was just fine and that we would talk to pain management about adjusting the morphine pump tomorrow to try to get J in less pain. GO DONATE BLOOD or Blood Products if you are eligible. You never really think of how much they are needed until you or your love one needs it.
Ronan is coming home on Friday. I am very very excited to see the little man. I have to start cleaning and organizing the house for J to come home in the next 2-3 weeks. Now that blogspot ate my blog I hope that I remembered to put everthing back in that was in the original. If not Ill update tomorrow anyways. Here is hoping for an EXTREMELY UNEVENTFUL night. Prayers Welcomed! Kimmy

Day -2, -1, and O!!!

Well as of about 10:30 this morning it is Jason New BIRTHDAY!!! THis means that Jason got his stem cell rescue today. They say that this day is a day of rebirth for Jason. He is now leaving his old life behind and embarking hopefully on a Cancer Free One. The past couple of days have been steadily getting more rough on Jason and myself. He has been very nauseated and they have given him pheneragan, zofran, and are now on to reglan( this medicine makes me hallucinate yucky!) in hopes of getting it under control. His throat is sore and they have started him on a morphine pump. They have also started him on IV nutrition vitams, electrolytes, and lipids(for energy). The lipids are pretty disgusting, its like a white milky substance hanging there. I think they should have just melted some butter in put in a bag...He is getting most of his medicines IV to cut back on how much he has to swallow. For the past two days he has not eaten enough to feed an anorexic ballerina...Im glad they are ontop of the nutrition. We got a visit from the wound ostomy nurse because some lacerations that J had prior and healed to this chemo have opened back up...We now have some medicine for that. I did get him up and about to walk once today. I am going to force him to go to an exercise class tomorrow afternoon. He needs to socialize as well as get out of the bed. Ronan is in Austin and he is coming home on Friday morning. I cannot tell you how much J and I have missed the little guy. I know he has had a blast though. HMMM what else The stem cells are in a preservative that when administered smells like cream corn!!! So now J reeks of cream corn. I did not particulary care for it before, but I will probably never eat it again now. Hopefully this wears off by tomorrow. J is resting in the bed, the nurse just came in and gave him the reglan...I guess its working since he is snoring. I was asked to go to the discharge class and learned what I have to do at home. Its a long list!!! Its okay, it will just entail a lot of charts! They said that Jason will be at a greater risk of infection for up to a year after Transplants. Oh, I was asked today to tell the difference between regular and tandem transplants. Well a regular transplant most likely for Lymphoma or Leukemia means that the person has acheived remission and is undergoing transplant to stay that way. In Jason's case he is undergoing tandem transplants because he has/had active Cancer in his body. I hope that clears things up alittle. I am falling asleep. Prayers Welcomed!!! Kimmy

Day -4 through -3.......Otherwise known as Chemo day 2 and 3

Well yesterday went pretty good. The doctors seem surprised at how well J is tolerating the chemo. He did have some nausea yesterday and today. They increased his lasix yesterday to maybe take off some more water or to just keep up because he gained two pounds from Thursday to Friday. The good news is that its working because he lossed a pound from yesterday to today! He is fighting me a little on the mouth care, they want him to use 3 different mouth washes, one every two hours while he is awake, the others 4 times a day. Its alot but its to supposed to keep the mouth sores at bay..I suppose only time will tell. He is also fighting me on getting up and out of bed. They want him walking ten minutes 3 times a day. I can maybe get him out of bed for 10 minutes a day. I try to keep explaining to him that he is just hurting himself by laying in bed but he says that he is tired and in pain and he just wants to sleep. There is not much I can do other than keep trying to get him up to walk. Most of the chemo's he is on cause pain as a side effect so I can only imagine that taking high doses of these cause. We should be getting a consult with pain mangement to help with this. Funny thing yesterday, they decided that after two days J was a fall risk....really two days after he has been admitted. HMM So they put on a yellow bracelet and set an alarm on his bed that would sound when he would get out and they would come help. Again I am still trying to figure out what the tiny nurses are going to do if my 6ft 8in 350 lb guy decides to take a tumble. Well they set and J got up to go to the restroom I waited for 5 minutes for them to come in and shut it off....they never did. I disarmed it, it was annoying. I also successfully got them to change us rooms. HAHA we are now in the "castle" and actually have room now. We dont have to trip over each other to move around the room. Instead of a 3 foot window, we now have about a 12foot window with a panoramic view of.....the other side of the building. Oh well at least J will be able to breath for the next 27 days or so. Jason got up with physical therapy yesterday for them to see how he was walking. He walked around the pods with no shirt on. Some lady made a comment about how Jason was showing off for all the ladies and he came back into the room and asked what was that all about, what was the big deal. I then had to break the news to him that he was on a GYN floor. His face was priceless. Well Jason is sleeping right now. Ill give hime another thirty minutes or so before I start bugging him again.....Prayers welcomed! Kimmy

Settled In....

We got a room about 6:30 last night, got up here and settled about 8pm. They started IV fluids and Lasix(to control water weight, its not taking any off, but its not allowing any more to be put on so we will take it!) Today they started with the premeds steroids and anti nausea, the on to the Gemcitibine (which resembled corn syrup consistency dripping) and then Taxel. I have been trying to keep him vigilant about mouth care with doing all their prescribed treatments 4 times a day but its a bit of a battle because apparently one of them doesnt taste so good. I keep reminding him that that taste is going to hurt less than the sores he will get so get to gargling...So far J has not had anyside effects yet, but they are cumalative so it will get worse each day. They will treat the symptoms just so far none to treat...I think that is good at least he wasnt sick right out of the gate like some stories I have heard. All the nurses have been really good so far. Its only been one day and I am already going stir crazy in here. I dont know how J is going to stand it.. Oh we did get out and walk two circuits around the nursing pod. I will try to get him to walk two times tomorrow. He is eating and drinking well, we are having a bit of a hard time with his blood pressure but they are keeping on top of it. Thats about all for now... Oh yeah if you want the address to mail him a card or to email him ....email jasonejourney@gmail.com... Prayers for continued lack of side effects!!!Thanks guys, prayers welcomed Kimmy

Sorry to be so remiss in writing but you guys know how it goes. Let see last Wednesday we went and Jason had a dose of Avastin (pretty cool drug that prevents the formation of new blood vessels to inhibit tumor growth). That went easy. We go see Dr.Nieto(his stem cell doctor) tomorrow for his pre admit blood test. We will be admitted on Wednesday and on Thursday they will start Gem/Taxel, Melphalan and Carboplatin. Oh the fun.... He is in great spirits even if his body isnt and is ready to get this show on the road. Because my Nana taught me not to pray for peanuts if what I want is peanut butter I ask you guys to pray specifically right now for Jason's water rentention to be eliminated and the pain in his back to lessen to make the chemo easier for him to tolerate. I would like to say thank you to everyone who has been emailing little cards and well wishes. You have no idea how much that means to Jason, myself, and one day Ronan. Its like a mini ray of sunshine each time we go to the mail box. I will email you the address you can send letters to Jason at once we get a room at the hospital if you email jasonejourney@gmail.com and let me know that you want it! Thank you, everyone for you support! Prayers Welcomed. Kimmy

The last time we were together.........

Well, the benefit was a success! Everyone's hard work paid off. There were a ton of people who came out to show support for Jason, it really was very surreal. Jason got to stay the entire time, it was good for him to get out and good for everyone else to see who was benefiting from them being there. Ronan was a rascal at the beginning of the evening but then quieted down towards the end. My chorus the Brazos Crossing Chorus performed and I think we did quite well. We had to be up at the hospital on Friday unfortunately Jason did not pass his Pulmonary function test then but they were nice enough to do a do-over on Tuesday before we saw the transplant doctor. I forced fed him almost an entire watermelon to get some of the water weight off that he has been accumalating. Goodnews is that if worked. His lung capacity has diminshed in the past two months but he is also carrying another 30lbs of weight on him. He is as 50% what a guy of his race, height, and weight should be. Thats okay, we just need to keep an eye on it through out the chemo. Today he got one bag of chemo (AVASTIN), this is the drug that is being used in combination with all these other drugs. It is approved in some types of cancer but not the one Jason has so that is part of the study that he is doing. We go back next Tuesday to see the doctor and then he will be admitted on the 11th. That day he will only get an IV and then they will start the HDC on the 12th. Apparently he will be in there a total of 28 to 35 days depending on how quickly he recovers from the chemo. Jason signed the consent forms and let me tell you how much fun it was reading over all the side effects listed...but hey the other option is not doing the study and well thats not so hot. Thats about all for now. I will update on how Jason is feeling in a few days. Prayers welcomed! Kimmy

Sorry I have negleted you.....

Well, so much has been happening the past couple of days and I have been remiss in keeping you all updated. Let's see, on last Thursday's clinic visit we were given the go ahead to start the stem cell collection much to our surprise(it was about a week ahead of schedule). We went in on Friday, one of Jason's CVC lines were clogged so we had to wait for Infusion Therapy to come and shoot some medicine in it and declot it. After that it was smooth sailing. He was hooked up to the machine about 5 hours on Friday, 5 on Saturday, and 5 on Monday. They collected a total of 12.7 million stem cells and they only wanted 12 million. WOHOO go Jason, go Jason...So now we are waiting to get our final consultation with the Apheresis Department (people who collected J's cells). We will see if he needs a transfusion of potassium, magnesium, or anything else. That should be it for this week. Our Transplant coordinator is going to talk to Dr. Nieto to see what other test J needs to have before we proceed to the HDC. We should start these next week sometime. Its awesome to finally be getting a move on. Now, the benefit is 2 DAYS AWAY!!!!AhHH, hence the reason I havent updated this. Everything is coming together nicely or chaotically whichever you prefer. Remember to RSVP we want to have food and a chair for you. You can pay for tickets at the door! There is fabulous stuff up for grabs, come on out and show your support for Jason!!! OH yeah, if you are in Austin, once this one is finish we will be turning our efforts toward you guys! Prayers Welcomed! Kimmy

First Check up

So we went in on Monday to have his first post chemo check up. As expected his counts were very low. A normal white blood count is between 4.0-7.0 Jason's was .2 on Monday. His platelets were low but his Red blood cells were hanging in there. We go in tomorrow (Thursday) to see how the counts are doing and if he needs a transfusion of anything. Tuesday he was feeling pretty poorly. Very exhausted and just kind of blah, today he looked a whole lot better and is moving around better as well. His appetite is okay OH from last week to Monday he lost 22lbs of water weight. He looks a whole lot less like an umpaloompah now. His potassium was low on Monday so we hooked him up to what is called a baby bottle. Its basically this little infuser that is pressured rigged to infuse medicine through is CVC. It totally looks like a baby bottle with a tube attached. Ms. Wagenbach came over today to get caught up on benefit stuff. Can you beleive its down to a week, time is flying by so fast. I emailed out a list of all the fantastic stuff thats going to be there so come one come all, just rsvp please! Our poor ROO is having to stay at Mimi and Pops right now. He was feeling off all weekend and when he started to spike a fever he had to go stay with them. He went to the doctor and they said he has a virus and some wheezing so he was put on steriods (like his daddy) and upped his inhaler to 4 times a day. Well now he has a pretty wet cough which could be the junk in his lungs breaking up or its turned into something bacterial so he is going back to the dr tomorrow morning. We miss him so much and I cant tell you how horrible it is to have a sick baby and not be able to take care of him....Oh well I know he is in good hands. We skyped him yesterday and will again tomorrow. Hopefully he will be able to come home on Friday or Saturday depending on how Roo is feeling and Jason's blood counts. I will update more when there is more. Keep up the prayers!!! Love Kimmy

Title goes here......

So in the hospital things were pretty normal as far as chemo goes. Jason started getting some sores in his mouth, they gave him medicine and that helped. He also started getting the required tiredness but thats par for the course. We finally made it home on Friday, they did send him home with an IV pump. Its actually pretty neat if fits into a backpack. I did disconnect him today because it was finished. I didnt see the point of keeping him attached to an empty bag for the rest of the weekend. We'll see if I get into any trouble tomorrow. He has a list of medicines as long as my arm that he has to take. I started giving him his Neupogen shots.(these help him to produce more stemcells for collection) However the crazy thing is the dosage they are giving him. The chemo that he had last year they gave him one injection a day for 5 days, this time he is getting 4 shots a day for 14 days. His poor bones are going to hurt so bad. I just keep reminding him that this will all be worth it when he is in remission next year. Besides being extremely tired he says he actually feeling okay. He has chemo funny tummy but nothing the nausea meds cant handle. His feet are so much less swollen and he is actually moving around pretty well. Alot better than he has in the past month or so. Jason's mom, my mom, and myself are trying to get the house in some order and starting on the cleaning. The house has to be immaculate when he comes home after his 21 day stay. Jason told me to write that he says thank you all for your support that it really means alot to him that there are so many people out there that care. That it really means so much to him and its keeping him going! Love to all you guys and keep sending those prayers up for us. Kimmy

We are traveling.......

So we got settled into the hospital Saturday night and they started a steroid and some IV fluid. Day one started out with Taxol (for those who care) at a continuous drip for 24 hours. He got about a thirty minute break this morning and they started him on premeds and Mesna. The Mesna is acutally a medicine used to limit the side effects of one of the chemos. They then started the Infosfamide and then Cisplatin. He is currently on the 14 hour 2 liters of post rehydration to flush his kidneys. Many of you will remember that he had this done back in 2009. So 3 more days like today and then off to the nearly daily blood draws to see when he will be ready to collect the stem cells. Thats were we are for right now. I went ahead and left him at the hospital to go home and take a little me time. His mom will be with him when she gets off work until I get back. It is nice being home even if its only for alittle while. Just a reminder about the benefit on the 29th. Tickets need to be purchased in advance by contacting pathebert34@msn.com. Oh and if you are on facebook look up Jason's Journey and become a fan, then send it to your friends to become fans. Lets show Jason just how many people are there rooting for him. Well I better be going. Just a quick update, keep those prayers coming!!!
Kimmy

The next stretch of the journey has started.

We went today to get fluid aspirated from some pockets that remain after the surgery that Jason had in May. They wanted to make sure that it is not infection. Tomorrow is kind of a big day for us. Definately for Jason. We start the journey through Stem Cell transplantation. He has some blood work to do in the morning, an EKG, and an anesthesia interview in the afternoon. Wednesday, we go to a pre admission Transplant class, and Thursday he has the sub-clavian catheter insertion and the removal of his PICC line, we also meet with the Stem Cell Transplant doctor and the research coordinator for the clinical trial that Jason is entering, also a Patient teaching class on how to give shots, just in case I havent been doing that twice sometimes three times a day since last October. On Friday he has a pelvic MRI and we meet with the Business Center to discuss money (bummer, why do they have to rain on my parade?). Then (drumroll please) he is admitted Saturday to start the mobilization chemo process. It will be five days of 3 different drugs, this is to help rid his body of as much cancer as possible and to move the stem cells from his bones out into the blood stream so that they can collect them 8in early August. I think I mentioned this in the earlier blog but the Houston Benefit for Jason's Journey is underway, please visit jlelliott.com for more info. Remember that tickets have to be prepurchased. We would love to see you there! Keep those prayers coming the next 6 months are really going to be trying on Jason and our families. Kimmy

Aint a that good news.....

Alright all my lovelies.. We went to see Dr. Azeem(the neurologist) today to see what, if anything can be done about Jason's sacral fractures. Well the bad news is they have to heal naturally, the good news, they have to heal naturally. So let me explain. Jason's hip bones and sacrum are not sturdy enough for any surgical intervention or hardware, the good news is that this will not hold up the treatment plan of high dose chemo and stem cell transplant. WOOHOO!!! There is a small collection of fluid located near the biopsy site that they will aspirate and take a sample of to make sure that it is not infection. They believe it just to be a collection of fluid left over from the surgery. The ct scans and Mri last week did show that the tumors are getting smaller..This means that the Radiatin treatments did a good job, now the hdc can do the clean up and hopefully make Jason disease free!!! Hopefully the aspiration will be scheduled soon, I know the transplant department is on the ball because we already had a call from them to start scheduling. The plans for the benefit are moving along so contact me on facebook or email if you want some more info. Oh also you can go to jlelliott.com to gather info as well. So finally a bit of good news, we will take it and put it in our pocket and run for it. Our friend Dave hit his six month remission mark so yeah for him and keep him in your prayers. Keep the prayers coming, Kimmy

A big set back.....

So we went to see Dr. Tannir on Thursday. We got good news and bad news. We will do the bad news first. They have determined that at this point in time, Jason is not healthy enough to undergo the high dose chemo and stem cell transplant. The fractures in Jason's sacrum are pretty severe, he is now in a wheelchair when he is not in the house. With the transplant and everything that it entails he needs to be mobile. Any problem that he has going into the transplant is going to be exacerbated by it. So the plan is to go see the Neurologist on Wednesday the 30th to determine what steps need to be taken to stabilize Jason's sacrum. Next week he will probably go inpatient to start on Salvage Chemo therapy in attempt to help Jason's symptoms and maybe we will get lucky and it will get rid of all the cancer at the same time. The transplant is not off the table, its just on the shelf till we get Jason is better physical shape. That was a blow, but its just a detour to us.
The good news is the one day of chemo that Jason had back in May has gotten rid of all the tumors in his chest and lungs. Wahoo!!!
The benefit is planned and I will post the link to the website as soon as it is up and running. Tell everyone you think who might be interested.
Keep the prayers going and pray for my Aunt Dani too. Her kidney disease is no longer in remission and her body cannot take anymore chemo. So keep all of us in your prayers right now.
Kimmy

Just yell timberrrrr!!! (bad joke I know)

Alright guys, so its been awhile since Ive blogged but it was relatively uneventful. We had a few nice weeks with Ronan. On the 9th he had a CT scan of his pelvis to determine if more radiation was needed and they decided it didnt. The tumors had not shrunk but were stable. To add to this though he has a S1 fracture in his sacrum with multiple tiny fractures through out the left part of his sacrum. So we went to the ortho doc and they said to put J on crutches and for us to let it heal naturally. Jason finished his radiation on June 15th. That was cool, but unfortunately things have been going kinda down hill since then. His feet and legs were swelling up and that was making it hard to walk. His mobility was getting progressively worse. Early Monday morning he fell when he stood up to get out of bed, so we were finally able to get him back in bed. (For those that dont know my husband is a BIG GUY 6ft8in 320.) There was no way I could just haul him back into bed. He said his leg just gave way. We went to the Er and they did a CT and fortunately there were no new fractures and none of the old ones were displaced. They couldnt tell about tumor growth because MRI's see that better and he was already scheduled for on Thursday. So he is now using a walker and can only walk for very short distances. If it is going to be anything more than around the house we have to use a wheel chair. We are also getting an ankle brace for him but we have to have it made because they dont stock giant and he will be starting physical therapy as well. He did have fall in the shower when we got home so now we are making the house more friendly for him. We are actually right now back at MDAnderson for his Ct of his chest and abdomen and xray of the chest as well. Tomorrow we meet with Dr. Tannir, go to the planning meeting for the benefit, then back to MDAnderson for his MRI. Well we should know alittle more about where things are heading tomorrow or atleast what are plans are next week. Keep on praying and spreading word about the benefit. I will have more details to post on that tomorrow as well. Lots of love
Kimmy

Stem Cell Breakdown....and an update just for you Nana!!

Alright we got the rundown from the Stem Cell Transplant(SCT from here on out) doctor. His name is Dr. Nieto. Then we went to a class and things got a little confusing, but here is the breakdown as I understand it so far.
We had scans today to see if further Radiaton (XRT) is needed. If not, Jason's last day will be this Friday. If he does his last day will be the 23rd. I suppose we will know by Friday. If the XRT is not doing its job or needs a little help, Jason will undergo some chemo before the SCT that is not related to the SCT itself. Now if no further treatement of any kind (no XRT or chemo) in about two weeks to a month we will start the SCT process.
The reason Jason is having to do the Tandem High Dose Chemo with Stem Cell transplant is that Jason's Testicular Cancer is what is called Refractory. Meaning it did not respond completely to standard chemo or radiation. So we go to High Dose chemo which is much stronger. When people undergo regular chemo their counts drop but do recover in about 14 to 21 days. With High Dose Chemo if they did not give stem cells back to the patient their immune systems would never recover. So they technically call stem cell rescue.
Alright the SCT process. Jason will undergo 5 days of Chemo inpatient called TIP (Taxol, Infosimide, Cisplatin). The purpose of this chemo is called Purging and Mobilization. The purging part is to rid the blood stream and Jason's body of any random floating cancer cells. The mobilization will cause the stem cells to move out of the bone marrow(located in your hips) to the blood stream. So what is a stem cell you say? A stem cell is the "parent" cell of blood products. Meaning this stem cell turns into White blood cells (infection control), Platelets(blood clotting), and Red blood Cells (carry oxygen around the body). Once there are enough stem cells in his blood stream (determined by a blood test) they will then proceed to the collection process.
Jason will have a Central Venous Catheter (CVC) put in under his collar bone and his PICC Line(from his arm)removed. They will hook him up to an apheresis machine. This machine will take the blood from him , spin it causing the parts of blood to separate. Collect the stem cells and put everything else back into him. They want at a minimum 10million cells. He will probably collect 2 days. I believe the collection will be outpatient, but Im not sure. After this he will be admitted to the SCT floor (theoretically). They will then do round one of his High Dose Chemo(HDC). There are 4 drugs in this first round, Gemcitibine, Taxotere, Melphalan, Carboplatin. He will get these over 5 days. They will try to control all of the side effects but we know for certain that he will get mouth and throat sores. About 2-3 days he probably wont eat or drink but they said they will control the pain. After the 5th day they will give him 2-3 rest and the they will do the SCT rescue. This constitues DAY0(they said to think of this day as his new "birth day"). Its very anticlamtic though because basically its like a drug transfusion. Jason's blood counts will plummet to nothing, they will give blood and platelet transfusions as needed. About days 10-14 they should start trendin upward. The goal is to have high enough blood counts he will be released day 21-30 post transplant. He will go home on antibiotics. He has a restricted diet as well as restricted visitors. Jason will have to go to the doctor quite often. We have about a months rest and then we go back in for round 2 of HDC.
The good thing is they will have collected enough Stem cells the first go round that we dont have to do that again . He will have 5 days of HDC this time Infosfimide, Carboplatin, and Etoposide. Then the same thing as before. Counts drop, wait for them to return, and then get discharged.
About 3 months after the second rescue Jason will have to be reimmunized with all his childhood vaccines since they will have been wiped out. I found this interesting. SO in total Jason will pobably be in the Hospital around 60 days out fo 90. He can leave his room, but he cant leave the floor to my knowledge. No fresh fruit, vegetables, or flowers. Everything has to be cooked thouroughly. And my favorite, someone has to be with him 24/7 for 30 days after he is release from each transplant.
So there you go. I think I got it all. Its a ton of information. We are getting rolling on some of the benefits stuff, so keep an eye out for it. I will let you all know if there is anything you guys can do. Jason is doing okay as he can be. He is very determined which is awesome! Ronan is great, he knows something is up and is very attached to Daddy right now. I am muddling through the best that I can. Thanks for your encouragement.Prayers needed. Kimmy

Here's your blog

We let me begin things on a sad note, I lost a friend to testicular cancer and leukemia on Monday. Sean fought bravely for over two years. He leaves behind a beautiful young wife and unborn twins. Please pray for Sean's family and wife Karen.

Ok, lets play catch up. We went and saw Dr. Tannir on Thursday. We discussed the transplant plan and went over the radiation schedule. We will see Dr.T on June 24th to see if J goes to start the transplant process the secind week of July or he will need some chemo first.

We did have appointments with the transplant department and I will write out that whole process in another blog.

We did go to the Er yesterday because Jason started bleeding. It took them 26 hours to tell us that it was a side effect of the radiation and we should contact his clinic on Monday. Oh well at least we are all home now with Roo and our own bed. I busted a blood vessel in my finger so I am having a hard time typing. I promise to inform you all about the transplant process, it is actually fascinating. Thanks you all for being so patient about an update. Prayers welcomed. Kimmy

Home again Home again jiggity jig....

Hello all, we got to come home! We are all very excited about that. Ronan is doing fine. He has not had a fever in a couple days and no new blisters. In fact last night he was literally trying to climb the walls! Jason is doing good, he his very happy to be home. He got cleared to drive for short distances so he drove himself to his radiation appointment this morning. We have an appointment next Thursday with Dr. Tannir (oncologist) perhaps we will get a better idea of whats going on and where we are headed. He has a CT on June 11th to see if the radiation is doing anything. If it is we continue. We know Jason will be having radiation treatments into the latter part of June (the 24th I think). Then 6 weeks after that (in August) he will have an MRI to restage and then decisions from there. Thats about all for now guys. We are home and will be having a Happy and most important UNEVENTFUL Memorial Day weekend. Hopw you all do as well! Thanks for the prayers and support!
Kimmy

Maybe...Maybe not

Alright guys, alittle update on Roo Roo. My mom called the me at the hospital this morning and said that Ronan was up and down all last night and was having something akin to night terrors. I asked if maybe he was upset about not seeing us and asked her to bring him up. Well she called back and said that she was taking him to the doctor because he has some blisters pop up on his mouth. I said ok, told Jason, and he kicked me out of the room to go see how Ronan was doing. I met them at the doctor took one look at Ronan and said "He has hand foot and mouth disease...again." For those that dont know he had this in December of last year, once you have it you are immune to that strain so my little guys has picked up a different strain. Awesome...but at least we know what is making him so miserable and how to treat it. The bad new is that Roo still has a low grade temp and he cant be around Jason until the fever and no new blisters are popping up.Grr..
More drama, apparently it takes an act of God to get records released from Methodist hospital. Completely ridiculous, I did however get them and handed them over to the Rad doc this morning. Jason has not had any previous radiation to his pelvis so he can get a stronger dose and we do not have to have the worries about reradiating any areas and all the side effects and potential problems that brings. His symptoms seem to be improving little by little with only the two treatments that he has had so cross your fingers and pray this goes well and works. They were making noise about releasing us tomorrow so hopefully that comes to fruition. Although he will have radiation everyday but once he is outpatient we will be able to do this in Sugarland. (for those who dont know its like 10 minutes away). We do have to go back maybe Friday to get stitches and staples removed from the surgery and back next week for an MRI to see how the radiation is doing. Thats all for now!! If God leads you to it.. He will lead you through it. Keep praying!
Kimmy

So we're back in the slammer...er..hospital

In the past 25 days, we have spent 6 at home. I don't like this pattern we have going on. On Friday Jason told me of some symptoms that he was having that we thought were relieved by the surgery. So I tried to call 2 different clinics and I did not get an answer back (it was Friday afternoon, is this a coincidence? you decide) I decided to go ahead and bring him up to the Er here at MDA. We were seen pretty quickly and they did an MRI. Not so hot of news. The tumor is growing and Jason is having nerve compression at the S2 nerve. They admitted him to start High Dose Steroids to try to help. We talked to the GU doc on call and a radiation oncologist. The options then were wait and see if the steroids and the chemo he had on Wednesday would do something, see about radiation, or do nothing. We decided a wait and see approach was best. Well we finally moved up to a room P413 (Saturday afternoon) and unfortunstely things kind of went down hill from there. Jason's "symptoms" got worse and we called the doctor and it was decided that since things were progressing so quickly that something had to be done and that radiation would be started on Sunday. So that brings us up to now. They do not have and GU radiation Oncologist on staff during the weekend so Monday Jason will have a more prescise dose of radiation. For today they went old school to target the are using xrays and previous images to pin down where to point the machine. He now has drawings and stickers back on his belly and groin area. I dont know if anyone saw these on him back in 2008 but in a sad way they are funny. Monday at 1 he will meet with the GU oncologist to do simulations and pinpoint exactly where the radiation needs to be focused to do the most good. There will be 15days of radiation, radiation is cumalative so we kinda have to wait for results. We have 1 day down and tomorrow is the next. The crazy thing is that it takes like 20 seconds for the radiation but 20 minutes for the set up. Oh well whatever works. He will not receive any Chemo while undergoing radiation. So I guess HDC(high dose chemo) will start in approximately 2 to 3 weeks. Pray that this works and helps to relieve Jason of some of these troubles. On a differet note Ronan is at the hospital right now( calm down, only because its Sunday and the doctor's office is closed). He apparently is running a fever and wont eat or drink anything. I know that they have given him so Motrin and Zofran(anti nausea) and that he is now in a room. So my heart is torn and I know I cant be in two different places at once and if Im going to spend time with Jason up here (which he needs) then I cant go to another hospital nor can I be around a fever burden Ronan. All that makes sense logically but it doesnt help my Momma heart. Im sure its just a virus, but ahhhh. Prayers welcome and most needed for J, Roo, and a stressed Kimmy!

Title Goes Here...

So, we were called at 8am to be in for chem at 9:30am, yeah we got there at 10:00am. We were in the outpatient chemo clinic and saw some of the same nurses that we had there 8months ago. Jason tolerated the chemo today like a champ! They did the premeds of dexamethasone(steroid) and zofran (anti nausea). The chem took about 2 and a half hours. We ate lunch, Jason slept, and I played on Billie's Iphone that she so kindly lent me for the day. She doesnt know it yet, but she is not getting it back but still has to pay for the plan! Jason is in bed beside me reading a car magazine..do you actually read those or just look at pictures? He is feeling sore from the surgery but other than that he says okay. Oh yeah, we went and got the drain taken out from his back because it was not draining. It was more oozing from around the drain. I watched the whole removal and it wasnt nearly as gross as I thought it was going to be. But lets just say Dr. Azeem, Im very disappointed in your stitches. I hope you did better on Jason's insides! LOL, he did 2 very large stitches in the shape of an X to close up the wound. They are only in there til like Monday so no biggie. Well thats all for now. We dont have to be back up there until Monday so thats 4 days off. WOO D WOO!!! Monday though its another all day event, then there are appointments on Tuesday and Friday. Write more when I know more. Love to you all,
Kimmy

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

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.