January 14, 2013

Back to blogging....again....hopefully!

I found the sweet app on my iPhone that connects me to my blog. I can do it all from my phone! Holy cow!! I am so dang excited!! I really do love keeping my blog up to date. What I love even more is going back through and reading all the amazing things my kids did :) What I didn't like was trying to find the time to sit down at my computer. Well, know I can update it from anywhere I want!! Did I mention I am SO excited!? ;)

May 17, 2012

11 days down....

11 days into the hospital stay.....11 days closer to him coming home! When I posted last week, his counts were still high enough that they said he could go outside for a walk. I thought it would be so nice for him to get outside and feel the sun.....not so much. He has to wear a plastic gown, a thick mask over his nose and mouth and latex gloves when he leaves his room. He was so hot and sweaty in all his gear. It was a pretty hot day, so we didn't stay out there for long. Wednesday night he got pretty sick, so they were giving him nausea medicine left and right trying to make him feel better and comfortable. He was pretty out of it Thrusday to Sunday due to chemo meds and nausea meds on a contiuious basis until Saturday. Sunday was his day of rest only getting fulids to keep him hydrated. Monday they put his stem cells back into him. It was quite the set up. There was a guy from the red cross that manned the container that the stem cells were froze in and the warming tray that he unthawed the cells in, there was a nurse at the iv pole maintaing the speed they were going into Josh to avoid him having a reaction and there was a nurse taking his vitals every 15 mintutes and making sure everything was being recorded into the computer. Josh was smelling and sucking on lemons and I chewed thru a package of gum and ate a couple of strawberry ring pops because the preseratives from the stem cells have a bad taste/smell. I have been told they smell like raw fish (mainly salmon), galic and cream corn. I don't think that it smells any thing like garlic and I apparently don't know what the other two smell like because I could say 'oh ya, thats what it smells like'. I can't exactly say that it smells like anything, it is just a very different, gross smell. Luckily it didn't stay around long. After the stem cell process it had just been maintaince fluids going into him to keep him hydrated since he hasn't been drinkng much. Along with the not drinking he hasn't been eating either. The said the most calories he has ate in 7 days is 800....not good. So they put him on tpn, which is a milky looking iv bag that gives him the vitamins, nutritional suppliments and calories that his body needs to make it though the recovery porcess. It may make his blood sugar level go through the roof so they are keeping a close eye on it and he will get insulin shots if need be. His blood counts are super low, which is the idea behind this whole process, but he is now needing infusions because theya re dipping under the low mark. Yesterday he had to get a bag of platelets, they will check him again later this afternoon to see if he will need some more. So far, so good....I guess. Other than the horrible nausea and not drinking or eating, no major complications and it has gone pretty much like they told us it would. When he's awake, Josh spends his days in his room watching tv and playing on his phone or the ipad. We get out and walk at least once a day. That's about the extent of our fun, pretty boring :/ Once again, thanks so much from the bottom of our hearts to you all for the continuious thoughts and prayers, for the dinners and all the help with our kids. From such a horrile thing comes such greatness and for that we are so blessed!

May 9, 2012

Overdue Update

Sorry for the delayed update, we've had a lot going on since the last time I posted something! So, on Friday April 28th Josh finished the stem cell collection. His final collection number was 11.5, with 10-15 being the range they wanted him in to have enough for both collections. They had him get a PET scan on May 1st to see how things were going since it had been two months since treatment. Based on those results would depend on when they would admit him into LDS for treatment/stem cell transplant. They found that there was only a little growth in his tumors and nothing more to be concerned about so his admission date was set for the 7th. On May 3rd we had a final meeting with everyone under the sun who worked on the floor he's on. We meet with a social worker, nurse coordinater, doctor, physician's assistant, dietitan and pulmanologist (I feel i'm missing others). All the information and rules they were giving us was so, so, so overwhelming! I quit taking notes in the middle of our second meeting :/ May 7th rolled around and here we are 3 days into the process. On Monday he got 4 hours of fluid before they started his first chemo med. It is so super hard on the kidneys so they wanted him overly hydrated to keep them working. When the kids and I skyped him Monday night he said he was feeling surprisingly well.....until Tuesday morning. He was sick and throwing up but the piled on the nausea meds and he did really well the rest of the day. After his last med yesterday they unhooked all his tubes from his lines. Now it's up to him to keep himself hydrated until Friday when they will hooked they fluids back up. I could tell by the look on his face that he was so happy not to have to drag that stuip iv pole around with him for a couple of days! One of the things he has to do is get out of his room and walk around the halls at least 3 times a day. Once he gets going he just trucks right along. Last night we walked up and down the hallway for a good 20 minutes :) He got sick again early this morning, but felt well enough a little later to order some french toast for breakfast. Since all oh his counts are still pretty normal they said that he can go outside. He still has to wear his mask, gown and gloves (standard procedure whenever he leaves his room) but im sure it wll feel so good to feel the warm sun! So far, so good though! 3 meds down....5 to go in the next 3 days, and day of rest then they will do the stem cell transplant Sunday. ^ days later they will give him a shot that will help his white blood cells grow faster than normal. After that we just wait for him to recover enough to get to go home. He can have visitors, not tons at a time, but there are no visiting hours. It's just up to Josh and how he feels. He's always open to text messages and emails (joshjonesy@me.com) to keep in touch with the world. He may not respond right away, but will when he feels up to it. I don't want to post all his info on here, so let one of us know if you want to visit and we can make it happen :) Thank you, thank you, thank you for all of the thoughts, prayers and support for our family. We are so blessed!!

April 26, 2012

Stem Cell Collection- Day Two & Three

Day Two On Wednesday we went back up to LDS bright and early for more collecting. They did the routine bloodwork, then gave him his shot. His platelet count was pretty low at 59 and his white blood count was still under the 100 mark. His collection number was 3.07, putting his total to 5.67! Half way there..... Day Three Today was another early morning at LDS for more collecting, except today Josh didn't feel so well. I could tell when he got up that his stomach was bothering him. He does this weird breathing thing when he feels like throwing up that, I guess, helps it stay down. More routine bloodwork and a shot when we got there and still low counts across the board. They gave him some nausea medicine before they hooked him up to the machine. It helped calm his stomach a bit and he was able to take a little nap. The nausea medicine must have wore off while he was sleeping because he threw up when he woke up :( We had to stick around for about 20 minutes to see how much the collection depleted his platelets. It was a really long 20 minutes...all Josh wanted to do was go home. We barley made it out of the hospital before he threw up again. When we finally made it home he got into bed and didn't move....until we had to make another trip back up to the hospital for his last shot. Today his collection number was 3.12, for a total 8.79.....SO CLOSE!! Hopefully we have a good day of collecting tomorrow so we can be done with this step and move onto the next. Thanks for all the prayers for Josh! Keep them up, they seem to be working :) Loves to you all!

April 24, 2012

Stem Cell Collection- Day One

Today was day one of the stem cell collection process. It wasn't anything like I expecting. We went in at 7:00 this morning so he could get another shot and some blood work done to check his platelets. In one day they had went up from 63 to 70, but his white blood count wasn't has high as they were hoping. The shots he has been getting since Friday were suppose to boost the growth of his white blood cells. It did, just not as much as it was suppose to. They got him all hooked up to the fancy machine and away it went pulling blood and spinning it and separating it. The nurse showed me how it all worked and what each tube and bag was for. Oh my gosh, it was so amazing! They told us that when they do the collecting that it would deplete his platelets and since they were pretty low to start with they checked them after we were done. We had to wait about 20 minutes and the told us they had only dropped to 53, anything below 15 would meant the he would need a transfusion. His collection number today was 2.6 and they are wanting the number to be somewhere in the 10-15 range when we are finished. They said given all his numbers, it was a pretty good start. If he keeps getting numbers like this we will be going in everyday until Friday. Keep your fingers crossed his numbers stay right around there....or higher.

April 23, 2012

Let the fun begin

We went back to LDS last Friday to check in with the doctors. They had Josh get blood work done to see where his platelets were at. They had went from 51 to 57 in our week wait. The eight doctors all meet before we got there and had decided that they couldn't, and shouldn't, wait any longer to get started with the stem cell transplant, since it has been 2 months since his last treatment. They know that his cancer is responsive to treatment and the point of getting the 2 treatments before this was to shrink as much  of the disease as they could. They are worried about the tumors growing in the time since his last treatment. They went ahead and started the shot that boosts his white blood cells. Today when we went in, his platelets were up to 63....they're moving in the right direction, just very slowly. Josh had his central line placed in his chest  this afternoon and we went back tonight to get a different shot that pulls his blood from his bones out into his blood stream. We go in bright an early tomorrow morning to start the collection process. He will be hooked up to the machine for 5 hours. The lab will count the cells sometime in the afternoon and then they'll let us know if they have enough or if we need to go back. We were told that it usually takes up to 3 days to collect enough cells. I worry because 1) he has a very low platelet count and 2) they have to collect enough cells for two transplants. If they don't collect enough cells by Saturday, they will freeze what they have, Josh will have to take a two week break and we will start this process over. When they collect the cells it drops the platelet count (this is why they want the number over 100) so Josh may have to have a transfusion if they drop to low.

Stay tuned, I'll let ya know when we're all done with this step and what they say the plan is moving forward. Thanks again for the bottom of our hearts for the thoughts and prayers!!!!

April 13, 2012

Quick Update

We just got back from our appointment up at LDS, so I thought I'd hurry and send out a quick update since our plans have now changed a bit.

Josh did some blood work and we meet with one of the transplant doctors, before we were going to move on to starting the shots for the collection process. When were about to leave the room and the doctor said that she wanted us to wait until she looked at his blood results before giving him the shot.....good thing she knows what she's doing!

We found out that Josh's platelets are REALLY low, so we aren't able to move forward until they figure out why they're low and how to fix it. On March 29th his count was at 99 and today they are at 51. I'm no doctor, but I've been going through this long enough to know that his counts are only suppose to go down after he has a round of chemotherapy (which its been almost two months now).....other than that they are either suppose to be on the rise or stay the same. His count at 99 was still on the low end but they were confident that they could work with it. They told us that the results from his heart test showed there was some fluid around his heart, but the EKG looked good and his pulmonary test was not all that great due to his asthma, his lungs (at one time) being filled with cancer and all the treatment he's been through, so when we do start the process, he will be working closely with a pulmonologist to make sure that there's no complication with his lungs. When they did the bone marrow test they collected an extra tube of blood that they are going to send off to test the chromosomes and do one other test. I'm really sorry, but for my life, I can not remember why they are testing the chromosomes and what the other test is that is being ran. It is really bothering me, so I am going to email our coordinator and hopefully she can tell me.

They won't move forward for several reasons, but the main two being that 1) With a number that low, they know that they won't be able to collect enough cells for both treatments 2) They don't want to collect bad cells, because if they were to put them back in him it would turn into Leukemia.

On Wednesday, all 8 of the transplant doctors will meet and make a plan of what to do with Josh next. They may treat him with another round of the ICE chemotherapy (the meds he got when he was hospitalized at IMC), thinking that maybe if they wipe out his platelets and give him the nuelasta shot (that makes his cells grow faster) they can catch his cells at a high point and start collecting then. They might have him do another PET scan (since it's been tow months since treatment) to see if things have shrunk, stayed the same or grown any. Even though the results came back normal, they may repeat his bone marrow test.....just to cover all there bases before making a plan and send us down that road.

We now go back for more blood work (to see where his platelets sit 1 week later) and to meet with the doctors to see what answers they have for us on the 20th. Until then.....we again thank you from the bottom of our hearts for all the love and support!!!!