WE ARE HOME!!!!! We got home yesterday about 1700. Elijah told us in the hospital that he didn't want to go home, but we knew deep down that he really wanted to. We got in the car and started to drive home and when I looked back at him, he got a huge smile on his face. That's when I knew that it was going to be good to be home. Elijah mostly wanted to lay on the couch, but he seemed very sore from his bone morrow. They did the bone morrow at about 10:00 yesterday morning, and it went so much better than the last one. They gave him different medication than the last time, and after they were done he was as high as a kite. Funny, happy and all around just nice. It was nice that the staff at the hospital got to see that side of him before we left. It took us several hour to pack up our one bedroom apartment (haha), and we managed to fill the suburban completely. Can you imagine what my house looks like right now. Santa came on Saturday, so nice that he could make a late trip for us. We were able to have our little Christmas, even though it didn't feel like Christmas at all with the 50 degree weather. Unfortunately, Elijah was on one of his down swings, but I was able to get a few good pictures and it will all be a memory to look back at. Elijah ha an okay night, about what I expected. Even if he was up several time, I know that we all got better sleep than we did at the hospital. I got into bed and just melted, it was so nice to feel comfort again. I almost forgot what it was like. I am giving Elijah an IV antibiotic through his PICC line every 8 hours. It was so hard to wake him up last night when he was sleeping so nice. Alivia was glad to be home too!! I think she may have been a little spoiled this last month, judging by her needing to be held and have my attention every minute she is awake. It is a tragedy if I walk away without picking her up. We will have to slowly detox her. She is too cute to not hold!! Today with Elijah has been night and day from the hospital. He still has some hard times, and definite mood swings, but he I haven't seen him happy for as much f the day as he is today. He has asked several times to get off the couch and find something to do. He still has a little trouble getting up and down and walking, but the fact that he wants to do it is a huge improvement. I know now that it's just going to take a few weeks for him to rebuild his strength. It is so nice to be home, I can't even explain it. Now the trick is staying home. We do have to go to the outpatient clinic to start his second round of treatment (consolidation phase) on Friday. We just need to stay away from being admitted. Lets pray for NO FEVERS PLEASE!!! As weird as it sounds, this already seems routine to us and it truly is our new normal. That's all for now, someone is needed some attention. Love you all!! Please stop by to visit , if your not sick of course. Bye for now.

We're day 33 in the hospital!! Needless to say, we are all ready to go. On Thursday yet another culture came back positive for bacteria. At this point Dr. Mitchell decided that it could be one of two things causing the infection. The fist thing he wanted to rue out was an infection that could be around his heart. They did another echo cardiogram because the last one they did here didn't have a good reading. The second and most likely cause was that his port was infected. If the echo came back okay, then the port had to come out. The echo was okay and so Elijah was down in surgery at 0630 Friday morning. I was able to be in pre-op with him, but eventually had to pass him off and it was so sad. I had to listen to him cry for me all as they walked down the long hall to the surgery room. There was nothing I could do to comfort him, and that is so hard. The surgery went well and only took about 30-45 minutes. The surgeon (Dr. Lobe) came out and talked with me after he was done and said that he saw a clot in the port that looked like it was probably the source of infection. Unfortunate that Elijah had to go through another traumatic experience, but if there was anything good that had to come from this it would be that at least they found what was causing his fevers so we could fix it and move on to the next hurdle. Elijah has been fever free for over 24 hours now and we are hopeful that he will stay that way. We could tell that Elijah was having some pain from the surgery yesterday, so they gave him some pain medication at about 0930 and he slept until almost 1430. This was awesome to finally catch up on some zzzzzzz. Elijah has a big pressure dressing on his chest from the surgery that will hopeful come off on Sunday morning. They were able to start an IV in the surgery room after Elijah was already asleep, which was nice (one less poke that he didn't have to experience). However, they aren't necessarily use to working with pediatric patients long term and didn't take care in taping the IV very well. Yesterday afternoon, we noticed that he was bleeding from somewhere and his IV had fallen out. So I guess so much for him not having to experience another poke!! They started an IV and luckily got it on the first try. I was only going to give them one try and if they didn't get it, I was going to have them call the life flight nurse to come and do it. That's only fair. When I work I only give myself at most two tries, but of course I almost always get it on the first, HaHa!! Elijah seems to be doing much better today and at least woke up in an okay mood. This will change I'm sure, but we take every good moment that we can get. Yesterday was also his last day of Steroids!! YEA!!! I can't even begin to tell you how exciting this is. I guess since we had to be in the hospital for this long, at least this round of steroids was all here and I didn't have to deal with him at home in reality. He started eating much better yesterday, really since he hasn't had a fever. Yesterday they did a lab that checks for his nutritional status. It was very low, which doesn't make since because he has been on the IV nutrition. The only theory the Dr had was that when he was having fevers constantly, his body was burning calories like crazy. He wanted to redraw the level this morning to see if it was up before he changed anything. Hopefully since he was eating some yesterday, that will help. Elijah will have this regular IV for now, and they were going to try and have someone come this weekend to do the PICC line. If He doesn't get the PICC line this weekend, he will get it Monday along with his bone morrow. He didn't have his bone morrow yesterday because he was just coming off an infection and Dr. Mitchell said we would be really sorry if he got an infection in his bone morrow. Apparently it won't make a difference to wait a couple of days. Dr. Mitchell said if everything goes perfectly this weekend we could maybe go home after the bone morrow on Monday. I would love to look back at all of these posts and see how many different discharge dates we have had. I'm not holding much hope for Monday, but we'll see. Regardless, we will be going home on IV antibiotics for several days. We will know after the results of the bone morrow on Monday what the next course of treatment will be. After the bone morrow on Monday, he will officially be done with the "Induction Phase" of his treatment. That's all for now. Things are definitely starting to become routine to all of us, and we are finding out what our new normal will be. Love you all!!!

Just an update from the rest of the day. Elijah continues to have fevers and they finally had one of the many cultures come back with growth of another bacteria. They won't be able to tell until tomorrow exactly what kind of bacteria it is, but Dr. Mitchell (the other oncology doctor) said that it could quite possibly be the same strep that he had before. They started an antibiotic and when they find out tomorrow what it is, they will change it if they need to. Bummer!! At least we are able to explain the fevers now. Dr. Al-Zein told us the day we got to Des Moines that this was a possibility and not to be surprised if it happened given the very low WBC Elijah had. This doesn't make it stink any less. There are a few things they can try to help it, but ultimately if he continues to get infections or fevers it will have to be surgically removed. If this needs to happen they would remove it and place a PICC line (glorified IV that threads through a vein to close to his heart) and leave it for a few weeks and then replace another port. All this really means to me is more trips to the hospital. BOOOOOO!! Elijah's ANC was down slightly today at 480. Dr. Mitchell said this could be from the few WBC's Elijah's body does have trying to fight off this infection. He also said that if everything goes well for the next couple of days (meaning no fevers and no more growth on any cultures) then we could still possibly go home this weekend and just do IV antibiotics at home. He told me that we are working on setting a record for the longest admission for an initial T-cell ALL diagnosis. Once again we don't want to be the ones setting this record. There were some "pet therapy" dogs that came up today and this was the first time that Elijah actually wanted to see and pet them. There was even a 12 week old golden retriever puppy, she was sooooo cute!! Otherwise most of the day was spent in the wagon roaming the hallways. It's time for bed, Love you all!!!

I had tried to put a new post on yesterday and lost it before I could get it published. I didn't have enough energy to redo it. We had a pretty good day on Monday. He slept a little better Sunday night and woke up a bit happier. They decided to do a CT scan on Monday to look at his renal arteries for any narrowing or hardening. In order to do the CT scan he had to lay very still for about 10 minutes. They decided to sedate him in order to accomplish this. Since we haven't had a lot of luck with any of the sedation medication in the past, they tried something else. It was our magic drug. He was back to normal for a couple of hours. He was happy and just a little bit goofy. It was awesome!! It was short lived, but worth it even for just a couple of hours. The only bummer with this is that they had to start an IV because they had to use contrast for the test and couldn't use his port for that. Of course this was traumatic and as soon as we got into the "treatment room" he knew he was going to get an ouchy. The CT scan showed normal renal arteries, which is great!! They put a pulse-ox sensor on his finger to watch his sats while he was on the medication and he called it his shark and the cord to the machine was a snake. So the shark was pulling the snake. It was hilarious. When we got back to our room, they were going to take it off and he wanted to leave it on, so they let him keep it for awhile. They also did an echo cardiogram on his heart to see if there was anything abnormal that would be contributing to his high blood pressure. His left atrium is slightly enlarged, but since he has had pretty consistent high blood pressure for the last few weeks his heart is working harder and therefore is slightly enlarged. They are thinking that his high blood pressure must be from the steroids. This is a side effect from prednisone, but it is usually easy to control it and that's not the case for Elijah. His last day for the steroids at the high dose he is on now is Friday, so they are hoping it will get better after that. I will have to check his blood pressure at home daily for awhile and follow-up in the office with these doctors, but they said they would try and coordinate with our other appointments. He ended up getting a fever Monday night late and that was the start to our miserable Tuesday. He had a fever of about 103.0 all night Monday and so therefore didn't sleep well. On Tuesday morning it had gone down a bit but not for long. It spiked again to almost 104.0. He felt horrible. It was a longgggggg day!!!!!! Otherwise, not much to report for Tuesday other than his ANC went up from 90 on Monday to 518!! This is great news. This is the number they wanted to see at 500 before we could go home, so we're there! Now the only problem is that he needs to stop having fevers. He spiked again about 0300 this morning to 102.0, but by this morning at 0800 he was back to normal. So now we're praying for no fevers so that going home on Friday is still our goal. They stopped some of the antibiotics since nothing has grown on the cultures and his counts are up. Apparently there are some antibiotics that have a side effect of causing fevers. I had never heard this before, but they use these all the time and I trust that they know far more than I do on this matter. He slept quite a bit better last night, still not great but even a bit better at this point counts for a lot. Elijah's new favorite thing to do is ride around in the wagon. This is great except now he thinks that he "can't want to walk". We might have to hide the wagon for the next few days. He is getting tired of this room and bed so yesterday I probably walked a few miles around the halls. I would start walking and he would fall asleep in the wagon. I really wanted him to get some sleep so I kept walking, I just wanted to crawl in with him and sleep too. I hope that today is better and we can all catch up on some sleep. I will put some new pictures on. Love you all!!

I'm really starting to get lazy about this. It seems like when I think about writing I'm frustrated that not a lot has changed and I find myself telling people the same thing over and over again. Elijah is still touchy with his mood, but I think that he might be starting to have more good times than he was. As of this morning he has 10 neutraphils!! YEA!! Ten isn't much, but it's more than O. The goal number is still 500 but this is all about baby steps. His hemoglobin was down today so they had to give him some blood this afternoon and I kept thinking that maybe he would cheer up a little, that still hasn't happened. The "kidney" doctor was in this morning and told us that they are having a hard time reading the ultrasounds and so if his blood pressure continues to stay high over the next couple of days they will plan to do a CT scan which will give them a better look. We hope and pray that everything is normal because if he needs to have any kind of surgery to fix this we would have to go somewhere else. Apparently the resources in Des Moines are not abundant, who would know?? Dr. Al-Zein said that as far as he knew the closest place that there would be a doctor for this is Omaha (Mayo). We do not need to be moved anymore, unless it means we are going home. Today Dr. Al-Zein said that discharge could possibly be on Thursday, but he has his bone morrow and Chemo on Friday so it might make sense to just stay until then. I think he is probably smart because we don't want to finally take Elijah to his home and then turn around and come back the next morning. This morning was the first time that he asked to go home. How sad!!! How does a person explain to a three year old that we are here for another week. I predict that this will get increasingly worse the better he feels. He keeps telling us that his head hurts and Meredith was telling us today that his hair follicles might hurt with his hair falling out. Some things are so hard to know with his age and the amount that he is able to tell us, or even understand himself. My dad and Tess came today and sat with Elijah so we could go to church. It was nice to be able to do that, but it was a little weird that we could just sit there without a squirmy baby or a bored toddler. We finally convinced Elijah to clip his remaining hair. I had mentioned before that he was starting to sleep on his stomach a little bit. There was hair all over his face, in his mouth and his eyes. He said it would be okay to cut it, the surprise came when he saw all of it on the floor. He got really sad and said "my hair runned away". We did not expect this reaction at all. In fact I thought he would be just fine not having to deal with hair washing and putting gel in it. Since we cut his hair he has complained that his head hurts, and so we don't know if it's uncomfortable from it rubbing wrong on his pillow or hurts from it falling out. We have put a stocking hat on him a few times and it seems to help a little, but I think the hat gets annoying too. I'm going too sign off for now. Enjoy some of the new pictures. Love you all!!

Elijah is doing okay today. He spiked a fever of 103.0 early afternoon and that always makes him feel lousy, on top of everything else. So since he had a fever they had to do cultures from both his port and his arm. They were able to use EMLA cream (numbing cream), but he had moved his arm wrong and it didn't numb in the right spot so it didn't have much affect. I don't know if he was having a better day or if he is just getting use to everything they have to do to him. He still puts up a fight, but it seemed to be slightly less intense today. Maybe I'm just getting use to it so it doesn't seem as bad?? Dr. Al-Zein is worried that they haven't been able to get his high blood pressure under control. We have been giving him a routine medication twice a day that he has already increased once, and on top of that a medication every four hours when his blood pressure is high. They thought in the last few days that a lot of it had to do with his discomfort, but he seemed to be better today and it's still high. He ordered an ultrasound of his kidneys to make sure there isn't a blockage that is causing it to go high and we will find out the results of that tomorrow. Dr. Al-Zein also consulted a pediatric nephrology (kidney/vascular) doctor, Dr. Auron. He stopped in and talked to us and said depending on the results of the ultrasound he might start him on yet another blood pressure medication to try and control this a bit better. What's one more at this point, right? Dr. Al-Zein also said to me today that he has to keep reminding himself that Elijah started out with a 800K white count and isn't the "typical" leukemia patient. He said the majority of leukemia patients come in with a 3K white count, they take care of that, start chemo and usually in a week they feel better and they're counts are up enough that they can go home. Elijah was very different in that respect and that's why it's going to be more challenging to get him out of this acute critical phase. This is starting to become redundant, but maybe I need to be reminded of this too because I just think that he should be getting better each day. As much as we seem to be doing with him that only seems reasonable. I think this is just a big learning experience for all of us and a different kind of sickness than we have ever been exposed to. Elijah now has several bald spots in his hair and the rest of it is very thin. I really want to buzz it because hair is everywhere, but for any of you that know how big of an ordeal this was before he was sick would understand that it's not really an option. I can't bring myself to do one more thing to him that he doesn't want done. Today I was running my fingers through it and getting lots of it out so I decided to get a baggie to collect it in. He saw what I was doing and after I showed him the baggie with daddy's hair in it he pulled a few out himself and shortly after said "that's enough". He was also taken a liking to sleeping on his stomach. This sometimes gets a little tricky when the IV tubing gets all wrapped around him. I want to send out a HUGE thanks to my friends and co-workers in Maternity. Amanda (friend from work) brought up a very nice gift from everyone at work and we truly feel like we don't deserve to have such great people around us to support us. Thank-you all so much for that, we can't begin to tell you how much we appreciate it. That's all for now, good night. Love you all!!

Yet another day here inside our our walls. This room is getting smaller by the day. Dr. Al-Zein was in this afternoon and I asked him about discharge. It seems like every time we talk about that the estimated discharge day is a little further away. We thought on Monday that we would be going home on or around Friday, but today he said that since his counts haven't starting recovering yet that we are probably looking at Sunday or more likely the first of next week. He said he might surprise us and we will see his counts start recovering tomorrow or Friday, but then he will get another big dose of chemotherapy on Friday so that won't help with his counts. Elijah is pooping like crazy, ahh the power of prayer. When we have so many people praying for him I guess we shouldn't have expected anything less, right? His pancreas enzyme levels were back down today which is good, but they will continue to monitor those every morning along with all of his other labs. Elijah did not have a very happy day today. He seems to have one good day, then one bad day and so on. I'm hoping tomorrow is a little better. His stomach has been bothering him, now more likely due to cramping from all of the laxatives. He is down to about 36.5 pounds (down from 41), and it shows. He looks very skinny and frail. Once he gets to feeling better (they keep telling me it's coming), we will have to get him a weight set since he is on the steroids! HaHa!! We joked with the nurses about that and they said, wrong kinds of steroids. I found an ocean animal set on the Internet and ordered it. It arrived today and Levi brought it after work. I think the fact that daddy finally came back and the animals was defiantly the highlight of his day. It was a very long day of Elijah asking and crying for dad to "come back". I think not only is he withdrawing from the last of his pain medication, but also from having dad not around as much. He doesn't understand that we have changed cities and hospitals, all he realizes is that dad isn't here 24/7 anymore. Melissa brought Alivia up to visit today and it's so nice to see her be so happy and healthy. She seems to be doing great with all of this even though we miss each other like crazy. We have two very strong kidos. That's all for now. Love you all!! Good night.