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