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!

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.

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!!!!

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!!!!

Over Due Update

Holy cow, we have had one crazy month! If it's not one thing.....it's another! But finally, an over due update on Josh.

Josh went back into the hospital for his second round of treatment on Tuesday, February 28th. I didn't send out any emails to family, so let's see how my memory is one month later.

We thought we knew what to expect for this treatment because we already had a treatment under our belts, but this one didn't go anything like that. We had a really, really bad start to our week and Josh's stomach was already so sick that his not eating started really early. The last thing I remember him eating was a sandwich from Quizno's Tuesday afternoon before we went to the hospital.

Tuesday, Feb. 28th- We went to Dr. Legant's office to get the blood work results and she could examine him before we headed to the hospital. His blood results were good.....and a bit odd. She told us that his platelet counts were higher than when he started treatment, meaning that there could be cancer in his marrow and it is now responding to treatment. I'm not sure what that means or if it effects what happens next......so I guess we'll just wait and see. We got to the hospital around noon and for some reason they were extra slow getting everything mixed that day. They didn't start giving him his meds until after 5:00 PM. At that point we knew we wouldn't be out of there Thursday night. I usually stay the night at the hospital with Josh, but was needed at home. Josh keeps telling me that he's a big boy and doesn't need a babysitter all of the time, but he humors me and let's me arrange people to be with him at the hospital when I can't be. I let him stay the night there by himself, much to my anxiety, and he did just fine :)

Wednesday. Feb. 29th- I wanted to be back up to the hospital by 7:30 AM so that I would be there when Dr. Legant came in to check on him. Josh doesn't always relay the whole message to me, so I like to hear it for myself so I know what is going on. Luckily, Josh was still laying in his bed were I left him I when I got there. He said that his doctor said everything was going good. He got all 3 meds today. They didn't start them until later in the afternoon pushing our leave time on Friday to late afternoon/early evening.

Thursday, Mar. 1st- When Dr. Legant came to check on him she said that everything was still going good. Last time on Thursday night is when Josh's heart rate started slowing down, due to one of the medicines. She hooked him up to a monitor first thing in the morning so they could keep a close eye on him. She was concerned that he still wasn't eating or drinking, so she said if he wasn't feeling better she wouldn't mind keeping him until Saturday. He told her that would make him feel worse. Since they started his chemo meds so late on Tuesday and his 24 hour medicine wouldn't be done until around 7:00 pm, she was worried about how he was going to get his neaulasta shot. He is suppose to wait 20-24 hours after his last medicine to get the shot, but if that was the case our IV therapy nurse at Jordan Valley wouldn't be there to do it. Dr. Legant went and talked to the pharmacist and they decided that it would be ok to start his last medicine earlier than usual so the we could go home Friday around 4:00.

Friday, Mar. 2nd- Dr. Legant made her usual visit this morning, she told us his heart rate never slowed down like last time and he was doing good.....well other than he hadn't ate or drank anything since Tuesday afternoon. She let home go home at noon, instead of 4:00, since he did good all night. That perked him up a bit.....not enough to eat, but he got up and showered and walked around for a couple minutes.

He said that he seemed to bounce faster this go round than last. He started asking for food and was venturing outside our bedroom by Sunday. He was eating, but not as much as he usually does. We went in for a check up on March 9th and things were about what we expected. His blood counts were very low but due tot he neaulasta shot they bounced right back up to normal. On the 2oth we went up to the Huntsman so Josh could get a PET scan. These results would determine what happens next. The next day we went back to Dr Legant for the results. I have to say I was prepared for the worst and hoping for the best. The results were somewhere in the middle. All the cancer from the scan in December is still there but has shrunk, there is no new growth and his spleen is still rather large. His doctor talked to the bone marrow doctors before we came in that morning and they both agreed that with these results we should move onto the stem cell process right away. You may want to sit down for this part.....

On the 29th we will go to LDS hospital for Josh to get blood work and a bone marrow test done. I was told to make sure that he is VERY well hydrated before he comes in, because we will be shocked at the amount of tubes they will be filling. Oh boy.....

We will then go back on April 2nd for a heart and pulmonary test. They want to make sure that his organs are healthy and functioning properly. They were nice enough to postpone the next step for a week so that we can take one last family trip to Las Vegas over Easter weekend to watch Peyton play in a basketball tournament.

Luckily I'm not overly superstitious, because on Friday the 13th, they will start the mobilization process. We will be going up to LDS Fri, Sat, Sun and Monday morning so that Josh can get a shot that will speed up the growth of his white blood cells. Also on Monday morning, they will remove his picc line and place a central line in his neck that they use to draw his blood from and will give him his treatments. On Monday night we will go back up and they will give Josh a shot that will "open the flood gates", as I was told. This shot will make the stem cells from his bone marrow go out into his blood stream.

On Tuesday the 17th we will make yet another trip up to LDS to start the collection process. We will be there from 7:30 AM- noon while Josh is hooked up to a machine that draws his blood, separates the stem cells and circulates the blood back into him. Then the lab will count the stem cells to see how many they got from that day. I was told that it could take up to 5 days of going and being hooked up to the machine to collect enough cells for the rescues. If after the 5 days they don't have enough, we will take a 2 week brake and then start the process over. When they get the right amount of stem cells, it will take the lab 1 week to 10 days to process they cells. At that time, Josh will be admitted for the treatments to begin.

He will be hospitalized for 3-4 weeks for the high dose chemo treatment followed by the stem cell rescue. After they feel that he has recovered enough, he will get to come home for 45-90 days to finish the recovery process. While he is at home he will need care 24/7 in case he breaks a fever or he has some sort of reaction we will be able to get him back to the hospital ASAP!! When they feel that he has recovered enough, he will go back into the hospital one more time for another round of high dose treatment and a final stem cell rescue. We've been told that there is a higher success rate for those who haven't been in full remission to have two treatment rounds and two stem cells rescues.

I was told that the cancer didn't respond to the treatments like they had hoped, but all the doctor's involved are saying that, other than the cancer, Josh is otherwise very healthy and they all seem to be very optimistic.

Well, that seems to be our month, and life moving forward, in a nutshell.

Again, I want to say thanks a hundred million times to my Mom and Step Dad for coming to stay with our kids and holding down the fort. Big, huge thank yous to Grandpa and Grandma Jones, Justin, Jered, Sharee, Cayden, Jason and Amanda for coming and staying with Josh at the hospital so that I could make to Peyton and Kasen's basketball games. Tons of thank yous to those of you who picked up and brought home our kids from games and practices and to those of you who just simply check in on us and keep us in your thoughts and prayers. We are truly blessed and so very grateful for each and every one of you!!

Two week update

I can't believe that two weeks have already gone by! For 3 days after treatment, Josh was pretty miserable. Ok, we were both pretty miserable! Josh really wanted something to eat but didn't know what he wanted, leaving me making and throwing food away faster than he could ask for it. On Tuesday morning, at about 5:30 am, he woke me up to tell me that he thinks he was finally over the hump. I could tell by the sound of his voice and was super happy for him.....us! Each day he got a little better and ate a little more.
On the 17th we went to see Dr. Legant to see if Josh's blood levels were good enough to start another round the following Tuesday. On the way to the appointment Josh kept telling me that he didn't fell well enough to go back just yet. Well, he was right. His blood levels were almost nonexistent. His white blood count was 0.8, (I think) meaning 800. The low end of normal is 4.0 or 4,000. His platelets were 47. The low end of normal is 150. Needless to say, the chemo medicine was doing its job.....very well. With his blood counts being so low, he defiantly wasn't ready to go for more treatment. In fact, he wasn't to be going anywhere. Because of the super low white count, she advised him to not go anywhere where there is lots of germs and big crowds. It was fine for him to be outside in the open air, but he needed to stay close to home in case he started to feel weak. He felt really good until she told him about his blood level counts. When we got in the car he told me that because she said he really shouldn't be feeling all that well that maybe he did feel so good after all. Luckily, he fought through the mind games and had a pretty good weekend. As far as staying out of big crowds, well that's another story. Peyton had a 4 game basketball tournament over the weekend that Josh was not going to miss. He did really good about sitting by himself away from the other people and leaving as soon as it was over. He said that he could miss it since he was feeling so well. Peyts was so glad he made it to all his games. I don't think he plays as hard when Josh isn't there.
We went back to Dr. Legant yesterday (the 22nd) to make sure his neaulasta shot was working to bring his white count up faster than usual. She said that he has young marrow that bounces back quickly. In 6 days, his white count was above normal at 9.1 or 9,100. He still feels a little low on energy, but looks and feels really, really well. After a quick visit to his doctor Tuesday morning, we will go back into the hospital for the second round of meds. She is going to order more nausea medicine this go round, hoping that he won't be so miserable following the treatment. After this round, we will wait two weeks before we go up to the Huntsman for another PET scan and then another week to get the results. These results will determine if he has to have another round of chemo or if we can move on to the transplant procedure.
I will update again next week to let you all know how treatment week went. Until then.....thank you, thank you, thank you to all of you for the dinners, text messages, thoughts and prayers!! We are so, so grateful to have such amazing people in our lives!!!!

One round down, one round to go

Here is the week in review through the email updates I sent to Josh's family each day he was in the hospital:

Tuesday, Feb 7th- We made it here to IMC, we've been here since about 10:00 AM. It's about 1:00 and no chemo meds yet, just getting lots of fluids right now. This first med is hard on his bladder, so they want him to keep it working as much as possible. They finally got his one chemo medicine started about 3:30 and he handled it really well. When I went home this evening, the boys got to facetime Josh from my phone to see and talk to him before Peyton left for baseball practice. I stayed home long enough so that Kylie could have a turn when she got home from dance. Thank you Apple products!

Wednesday, Feb 8th- Josh is doing really good this morning. We made a little trip around the halls this afternoon, to keep his legs working. He threw up once last night, so they gave him a stronger nausea medicine and he slept good most of the night. His doctor came in this morning to check on him. She said his blood work and vitals all look beautiful. Today he'll start treatment about 1:00. He gets all three meds today, so it may be a bit rougher than yesterday, but they are going to double up on the nausea meds.....hopefully it helps. My mom brought Kasen and Kylie up to see Josh this morning.....he loved seeing them. Peyton came back to the hospital with me after his game to watch the North Carolina/Duke game with Josh. Those two always watch that game together, so I was glad Peyton wanted to go and hangout at the hospital.

Thursday, Feb 9th- Josh did pretty dang good yesterday. He ate and drank really well and stayed up all day. He got around to showering last night and that made him feel good and relaxed. He got sick about 4:00 this morning and threw up a bit. They gave him a strong dose of nausea medicine and he's been sleeping since. His doc came in to see him this morning and she said she wants to keep him one more night. She wants to make sure he stays well hydrated.....worrying about renal failure and she said his platelets are a little low so she wants to keep and on that too. His 24 hour med will be done sometime around 4:00 PM and then he'll get his last dose for this round and that takes about an hour to go in.

Friday, Feb 10th- YAY, our last update from the hospital.....this week. Josh sleep ALL day yesterday. Between the chemo meds and all the nausea medicine, he was knocked out. When I got back from Peyton's basketball game about 7:30 he was just coming out of it. Needless to say he wasn't so tired when bedtime rolled around. He was up to getting out of bed, so we took another lap around the hallway. He didn't eat or drink anything at all today. I got him a chocolate shake when I got back last night but he didn't even eat half of it. You know Josh really isn't felling well if he won't even eat ice cream! It turned out to be an interesting night. About 8:30ish they came in to get the routine vitals and noticed that he had a slow heartbeat. The last couple of days his pulse has been in the 60-70 range and last night it was in the mid 40-low 50 range. They called his doctor and she asked that he be put on a monitor and to notify her if it dips below 45. Well, that didn't take long. She was notified and an EKG was ordered. When they were doing the test his pulse sat at 44-45. All night the monitor keep beeping when his pulse dropped to 45 or lower. Josh keep yelling "geez, stupid thing." I'm not sure if it was at the machine or his heart. It made us both a bit nervous but they didn't rush in his room when it went off and his doctor never came in so by about 3:00 am we decided we were tired to get some sleep. His doctor came in about 8:00 this morning and said that he is totally fine. His EKG was normal, just slow and his oxygen intake his good. The slow heartbeat his a reaction to the "I" medicine. She said that he handled this round beautifully.

We finally made it home about 4:00 this afternoon. We were ready to go at noon, but had to stick around longer so Josh could get his nuelasta shot at 3:00. Josh goes in on Thursday to get some blood work done. His doctor wants to make sure his blood counts are normal. If they are low he will need a transfusion right away. We then go into the doctors office Friday. If all is well she will go ahead with the second round of treatments on the 20th. If his blood levels aren't where they should be he will have to wait another week and start on the 27th.

A really, really big huge thanks to my amazing mom who has been here since Saturday helping us out with our kids. She has played mom to them all week and has been taking care of the household duties. Tons and tons of thank yous go out to Josh's Grandpa and Grandma, his brother Justin and his other brother Jason and his wife Amanda for coming to hanging out with Josh at different times so I could make it home to shower, take a little nap and see our kids for a bit and I was able to make it to both of Peyton's basketball games. More big thank yous to all of you who picked up and brought home our kids from all there activities this week. Thank you, thank you, thank you to all of you who are checking on us daily and keeping us in your thoughts and prayers. I honestly could not have made it through this week without all of the help. We are truly blessed!!