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