Tuesday, January 29, 2008

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.

Saturday, January 26, 2008

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!!!

Wednesday, January 23, 2008

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!!

Sunday, January 20, 2008

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!!

Thursday, January 17, 2008

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!!

Wednesday, January 16, 2008

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.

Tuesday, January 15, 2008

We didn't update yesterday, but it wasn't the best of days so I will try and cover both days now. The night before last Elijah did not sleep well at all. He complained of his stomach hurting all night long and he just really needed to poop! Since he was up all night, he pretty much slept all day yesterday. He also spiked a fever yesterday and they had to draw cultures not only from his port, but also from his arm. This is always a huge struggle of course, I would be mad too. We had a big teaching session with the head oncology nurse and social worker. They are both very nice and helpful. They helped put some things into perspective, and teach us some reality outside the textbook. It was a lot of review from what we learned in Iowa City, but we are just fine with that because there was a lot to absorb. We thought that because Elijah had slept pretty much all day that we were in for another long night. To much of our surprise, at about 22:30 he finally POOPED!!! YEA!! It was almost immediate that he seemed to feel better. Right after that the "Gang" showed up. Yes the gang that all SHAVED their heads!!! It was all very comical and much needed laughter. Can I just say that as nervous as I was, my husband is a sexy looking bald man!!! I added some pictures for your entertainment. This lasted until about 01:00, and Elijah slept like a log through all of it. Once he pooped and felt better, he crashed despite all of the commotion. This would have been a great opportunity to catch up on some sleep, but I wouldn't have missed it for anything. A HUGE thanks to all of you crazy guys for supporting our squirt, even if he doesn't understand. I do have to say that he has been in a much better mood today and has been looking at the pictures and saying that you all lost your hair, that it ran away!! It seems like each day he looses a little more hair, or that it just comes out easier. Today Meredith came down so that I could take Alivia to an appointment, and being out in the real world was actually pretty nice. I went to get a prescription at wal-mart and got frustrated about how long it was taking and one of the medication they didn't have in stock, you know typical wal-mart. After the fact, it was nice to be normal for a couple of hours. While I was gone Meredith went to an ultrasound with Elijah, they got to ride in a wheelchair together. He had to have an ultrasound of his pancreas because of some elevated levels. The GI doctor said that she thinks he has some pancreatitis most likely from all of the medications he is taking. She said along with the constipation, this is also contributing to his belly pain. We didn't really get a chance to talk with the doctors after the ultrasound, but I'm sure we will hear about it tomorrow. Meredith said that he did really well during all of this, and the ultrasound tech said she was really impressed with how well he did. It makes me wonder if Elijah is tired of having me around all of the time, and it was good for him to have some change. He did get really sad as I was on my way back down, but I stopped to get Isabelle and Ava to come see him and he was better when I got back. He is still an emotional roller coaster!! We went up to the playroom for awhile and even had another bath tonight. So it's really been a pretty good day. Thanks for all of the continued prayers and support. We couldn't make it through all of this without you!! Love you all!

Sunday, January 13, 2008

We all got some sleep last night, I think we were only up 3 or 4 times. Putting that into perspective that constitutes a pretty good night. Elijah continues to complain about his belly hurting, but it seems to be a little less frequent. Dr. Al-Zein was in this morning and is changing some of his medicine for his belly. He also thinks that Elijah could start to walk around a little more, but only if his up to it. He didn't want us to force him quite yet. He is happy with his numbers right now, all except for his neutraphils still being O. Since they started the IV nutrition, his labs show that he isn't as dehydrated anymore so he was happy with that too. He said that we can expect him to receive a couple more platelet transfusions within the next week. We were able to get Elijah up to walk, he just didn't want to wear the mask. We took him upstairs to the playroom and played for a bit. Then we came back down and gave him a bath. To say the least, he is pooped!! Elijah continues to lose a little hair here and there, but it's not coming out as fast as I thought it would. There was a bit on his pillow this morning and then a bit more in the bath tub from his bath. I guess he has surprised us more than we would have thought in the last few weeks, so maybe he won't lose all of his air. I asked the nurse we have today if she had ever seen a child that didn't lose their hair and so said not that she could remember. She said all of the kids are so different on how they lose it though, some fast and all at once and some slowly. We plan to get Elijah up a few more times today in every attempt to get those bowels moving. We will update later. Love you all!!

Saturday, January 12, 2008

There isn't a lot to report today. Elijah and I didn't sleep much last night much due to the fact that he slept so much yesterday. He has been complaining non stop about his belly hurting. We all know that he probably still needs to poop, but he can't seem to get it all out. He has been very touchy since the bone marrow biopsy yesterday. It really sucks that he was awake through the whole thing, and now any time someone walks into his room he freaks out, even with company (so please don't take it personally if you visit). I asked them to give him something more to help him poop, and so they are giving him the maximum dose of miralax, which is double what he has been getting. We are praying this helps so that we can all get some sleep tonight, that is between all of the vitals and medicine. We think that it feels good to Elijah to sit on his potty, because he has been wanting to do it a lot. Sometimes he goes and sometimes not, but the funny thing is that sometimes he sits for long enough that he falls asleep leaning on us. Elijah's blood pressure has been high again today, so Dr. Al-Zein increased his medication. I was talking to the nurse and also mentioned that it is possible that his blood pressure is high because he is so uncomfortable. They discontinued one of the antibiotics because there hasn't been any growth on the cultures they did here while he was having such high fevers. So far today, he has only had one fever of 101, but Dr. Al-Zein said that if he is confident that we have gotten on top of the infection since he isn't having the high fevers (102-103) anymore. We will pray that he doesn't get anymore high ones. Elijah's ANC (Absolute Neuttrafil Count) is still O and that has to start coming up for us to go home. Dr. Al-Zein said that he hopes that this will start to improve next week sometime. He did just have a heavy dose of chemotherapy yesterday, so that knocks out even more of those cells, but the doctor says that the chemo affects it only for a short time. That's why he thinks it won't start recovering until next week sometime. Elijah went for a walk around the unit tonight with Levi, in hopes of getting his bowels moving. They make him wear a mask if he goes outside of his room, and he didn't like that very much. He got to go to the movie cart and pick out a couple of new movies and he enjoyed that. It's time for bed, talk to you all tomorrow. Love you all!!!

Friday, January 11, 2008

To the best of Dr. Al-Zein's knowledge, WE ARE IN REMISSION!!!!!!! YEA!!! We desperately needed some good news today, and if that is it then we are good with just that. Of course we won't have the definitive results until Monday, but Dr. Al-Zein said he looked at it himself and it looked clear. He will give us the % on Monday. This is so exciting, we knew his little body was strong to fight it. His temperature is also down for right now, which has to make him feel better. The only bad news I have to report so far today is that he is a difficult patient to sedate. The bone marrow biopsy was excruciating for all of us. They had to keep giving him medicine to try and calm him down, but he pretty much yelled and thrashed through the entire procedure. The only good thing that came out of it was that as soon as we got him back to his room and calmed down, he looks more restful than I have seen him in days. He really needed a good nap, so the combination of medicine, yelling and thrashing did him in. Just now I heard lots of gas along with some other noises that have never sounded better. We have been waiting for him to do this since yesterday morning. They let him start eating and drinking just about an hour ago, and he finished two sippy cups full of milk in about 20 minutes. He really was thirsty!! We had Rhonda and Lane come to visit and brought a little stuffed animal puppy, thanks for coming. It's always nice to see new faces. Shani also stopped by and brought a whole bunch of fun stuff. That was so sweet of you guys and I hope you know how much we appreciate it. We have also had some really yummy dinners, so another huge thanks for that. I'm going to go for now, if I have more to report, I'll do another post later. We love you all!!

Thursday, January 10, 2008

Sorry we didn't update today, it was kind of a rough day. Elijah is still running a fever of about 103 degrees and that makes him miserable. He also has some waste stuck in his large intestine that he can't seem to get rid of. This is a problem of course because it can get infected and then you are talking about all sorts of complications up to and including possible surgeries. So, needless to say, we are praying that he poops and that these problems that we are having will come to an end so that he can have a semi-normal childhood. We've noticed that he is even dreaming about being poked because he cries out "NO!" in his sleep. We often feel helpless because he is looking to us to solve his problems as parents do, and we are unable to do so. Because of the pooping issue, he has also been prohibited from eating any food or drinking any liquids for the next 12-24 hours at least. Of course that means he is asking and pleading for food and drinks that we can't give him. He started crying when he asked Levi for gold fish and he said no. That pulls at our heart strings, but hopefully he won't remember these things when he is older (not that it makes it any easier now). We want to let everyone know how much we appreciate the help that you have given us, and unfortunately we will need more in the days to come. We love you all so much for the sacrifices that you make for us and will feel hard pressed to ever be able to give back what we have received. Thank you also for the prayers on our behalf, we know that the Lord is blessing us because of all the people praying for Elijah and us. We will keep you updated tomorrow about his bone marrow test and how he his doing. Hopefully he will not be as sick by next week. Our doctor is saying that maybe we'll be out of the hospital by next Friday. We can only hope that is true. We did ask if we should get Elijah out of bed and help him walk, and the doctor responded by saying that he was so sick that he should probably stay in bed for the next 5-6 days. That also means he will probably need physical therapy in order to build up his muscles (which he is not ready for per the doctor) in order to walk. The doctors anticipate that Elijah will lose his hair sometime after the third treatment which is tomorrow. The bone marrow test is tomorrow at noon, and hopefully we will have preliminary results 3-4 hours after that, but he is confident that we will be under the 5%, which is remission. Any of you that want to shave your head so that Elijah doesn't feel bad about losing his hair, feel free to join Levi in that act (even though I disapprove), he thinks it will help Elijah cope with the loss of his hair. I had to put gel in his hair and spike it for one last picture before he loses his beautiful hair. That is all for now, we love you all!

Wednesday, January 9, 2008

I hate that I even have to put this update on here, but none the less this is our reality. The blood cultures came back the opposite that we would have wanted. There is a strep bacteria that grew and so we are stuck here until next week at least. The oncologist came to talk to us his morning and gave us a better idea of what to expect for the next couple of months. I can't decide if his glass is half empty, or he just doesn't want us to be surprised. It sounds like there is a pretty good chance that we will be here fairly frequently in the next month or two. This is where it gets confusing, so I'll try to explain it how I understand it. When they do blood work on Elijah they look at lots of different numbers to explain one common thing, no immune system. At first we thought that it was all due to the low WBC count. A big part of it is, however they are other things that play into that. The other major thing that they look at is his neutrophil count. I believe these are the cells that will help to start making the "good" WBC (as opposed to the "bad" ones or the leukemia cells also known as blasts or baby cells). The oncologist said that it isn't necessarily the antibiotics that is keeping him here in the hospital because sometimes we can even to antibiotics at home. The fact that he continues to spike fevers, and now Tylenol isn't bring them down in combination with his neutrophil and WBC are what is keeping him here. They want to see his neutrophil count at 500 minimum and right now his is O!!! So the fact that he has developed an infection didn't seem all that surprising to Dr. Al-Zein. He doesn't think that these will start to rebuild until next week sometime. They also drew more blood to test for a fungal infection that is common in kids with leukemia. Dr. Al-Zein decided to start an antibiotic that will also cover a bacterial infection just to get it in his system, and if the culture comes back negative for the fungal infection they will stop that antibiotic. So currently he continues to get the antibiotic that was started in Iowa City, which is a broad spectrum antibiotic, and then he started another one today that will target the strep bacteria. (three antibiotics altogether) They just put him on a cooling blanket to help bring down his fever since the Tylenol isn't doing the trick. Hopefully with the combination of the two, it will start coming down soon. His fever has been between 101.8 and 103.0 since about 07:00. As you can probably imagine, he is very cranky and feels awful. Dr. Al-Zein said that he will most likely start Elijah back on the IV nutrition tomorrow since he is still not eating. He also told us not to be surprised if Elijah has to have between 2-3 blood and/or platelet transfusions in the next week. They just gave him some platelets this afternoon because they had dropped to 12K (normal is 120K-150K, but he has to stay above at least 20K to not have a transfusion). His hemoglobin has also dropped to 9.1 from between 11-12 that it has been the last couple of days. If his hemoglobin drops to 8 or below, he will receive blood. They are going to start him on a special mouth wash because of the soars in his mouth, because Dr. Al-Zein said with his counts the way they are, this has a good chance to get worse. So yet another few bumps in the road, but Elijah is being well taken care of and will hopefully overcome this too. Dr. Al-Zein said that although it is better to have a viral infection, they can treat the bacteria infection and get him better. I have heard some worried comments about people visiting since he got this infection but I just want everyone to understand the difference between a viral and a bacterial infection, or at least the way I understand it. I think that I have mentioned in a prior post that Elijah's body is it's own worst enemy, especially when it comes to bacterial infections. Most likely this infection came from within his own body. If it were a viral infection, then we would know that it probably came from an outside source. So, if you would like to come to visit, we would love to see you as long as you haven't been sick, or think you might be please send us a comment instead. Dr. Al-Zein did stress to us how important it is to wash our hands, so that will become a very important aspect of our lives. He even told Levi and I to change our clothes when coming home from work. Just common sense things really, but not something you would think about with a healthy child. That's all for now, hope I can have a happier update later or tomorrow. Love you all!!

Tuesday, January 8, 2008

We are finally back to Des Moines and it feels great to be around things that are a little more familiar. It was so sad to see the look on Elijah's face when we walked down the hall and got to his new room and he saw the "bed". He lost it and was so sad. I really think that he probably thought that since we had gotten in the car that we were on our way home. It didn't take long to get back into the routine of starting a movie and taking vital signs. He was really happy for most of the day. We got settled and then Levi left to go get some things settled at work and as soon as Levi left Elijah got really grumpy and stayed that way for the rest of the evening. Hope this isn't foresight into what it's going to be like once we get home. It will be a whole lot of me, and not much of Levi as he will be very busy trying to catch up at work. Hopefully just being home and not having people in to bug him all the time will make a huge difference. Elijah had another fever at 20:00 that was 100.8, and if it goes up to 101.5 they will have to call the doctor. I hope it will go down because they won't give him Tylenol until it gets up to 101.5. Elijah is doing so good with everything being done to him, he is so big. He has to take about 6-7 syringes full of medication twice a day and it's so hard when he doesn't really understand why he has to. I think he is tired of hearing that it will make him better, especially when he continues to feel crappy. He is complaining more about leg pain and stomach pain which is all normal as long as he is doing chemo. It's a fight to get him out of bed, or even move him around in bed. We talked to the nurse that admitted us a little about how long she thought we would be here and she explained how they do things here. Most of Elijah's treatments will be done outpatient in a different building. They call this "clinic". So really, we won't be back on this floor unless he gets a fever or sickness otherwise. So ultimately she said it's possible that we will stay here until Thursday and then go home and come back on Friday for clinic. I think we will know more after tomorrow when we actually talk to the oncology docs. We didn't see them today because we didn't get here until about 16:30. My mom brought Alivia up for us to see, and it was so nice to see her after so long. She looks like she got taller and my mom said she has caught her standing without holding on to anything. We better not miss her first steps!! She seems very happy, so I know she has been well taken care of. Thanks to everyone who has had her during all of this. It means so much to us that we have enough people willing to care for her, and enough that we haven't had to worry about how she is. Thanks!! Thanks!! Thanks!! That's pretty much all for now, I'll update tomorrow after we talk with the oncology docs and find out some more details. Good Night, can't wait to curl up on our really comfortable beds here!! Love you all!!!
Just a quick update for now. Elijah spiked a fever last night so not going home yet. The good news is that they are letting us go back to Blank Childrens Hospital today to stay for the three days of antibotics, so we will be much coser to home and we get to see our baby girl!!! So I would write more, but we are anxious to pack and get going. See ya!!!

Monday, January 7, 2008

Well, I was waiting until we got the results from the bone morrow biopsy they did on Friday but we are still waiting. We did talk with the doctors today about being discharged, and they have given us a tentative discharge date of tomorrow. Of course this all depends on how he does through the night and tomorrow. He has made a lot of progress the last couple of days, and as of about 11:00 today they turned off his nutrition because he has to be eating and drinking on his own for us to go home. So far today, he hasn't eaten anything, but he has been drinking lots. Gosh, this sounds like normal healthy Elijah!! The doctors this morning did remind us that his is still in the induction phase of chemo for a very serious disease, so he's not going to feel like eating much but we just need to keep offering. They also talked about starting an appetite stimulant that they give some of their patients that have a little more trouble eating, so we might start that. They also found two soars in his mouth (bummer), so they are going to start him on an antibiotic to help prevent any infections and we will keep giving that to him as long as he is immune supprest. They are also going to start a medication that we swab in his mouth to help prevent thrush. Elijah seem very sore today every time we try and move him or have to touch him. We are trying to encourage him to get up and moving, but he now fights us every time we try and do that. We did get him to go to the play room today when they were having an activity, and also fought him all the way through a bath. It's so hard because he is tired from not getting a good nights rest, and for that matter so are we. We have just decided that even if he could sleep better, the nurses are in so much that it's a very restless night. We are crossing our fingers that we can go home tomorrow, but we'll have to wait and see. We will be going to the oncology clinic in Des Moines the day after we are discharged from here. They want to get some preliminary labs on him and also do lots of teaching with us. It sounds like we will be going about twice a week for labs and once or twice a week for treatment. Wouldn't that be great if they would coordinate them to be on the same day!! I'm not counting on it. Well, if we hear anything more today I will put an update on, otherwise probably just tomorrow. Have a good night! We love you all!!

Sunday, January 6, 2008

I finally figured out how to post a short clip. This is Elijah taking his first steps after being in bed for almost two weeks. Good job squirt, you're so strong.
video
We missed a day, but not a lot new to report. Elijah had a pretty good day yesterday. He was happy for a good part of the day, but he seems to go up and down with his moods. Grandma Arlyce came yesterday to visit and brought him a huge dinosaur coloring/sticker book. They had fun with that for awhile, and Levi and I left the hospital and went to Wal-Mart. Yes, that's right I left the hospital and went to my favorite place ever, I miss being at Wal-Mart everyday of the week. HaHa. Grandpa Diddy and Grandma Tess came later on and stayed the night in Elijah's room so we could go to the room we are renting and sleep all night long with no beeps to wake us up. It was so nice!! Elijah was sad when he woke up and we weren't in his room. That was the first time we weren't there. But as soon as grandpa and grandma left the room, he wanted to know where they went. The doctors decided to put him on a more long term blood pressure medicine because they were having to give him the PRN medication every 4 hours. the doctors think that when he can get rid of all the fluid, his blood pressure will get better, but the steroid that he is taking also can make it higher so that's why they are going to just keep him on it for awhile. They also gave him some lasix (diuretic) this morning to help get rid of some of the fluid. The reason they didn't give him this sooner was because his kidney function labs were all high from the chemo and getting rid of all those cells, and the lasix would make them higher. As of this morning they have dropped to a more comfortable level and so they felt like it would be a good time to give it. So lots of pee today, I mean LOTS!!! We have already noticed some of his swelling has gotten better even from early this morning. Elijah had some more visitors today and unfortunately was sort of grumpy, but I guess just like normal we can't have him happy all of the time. Kevin and Jenni came and brought Addy and they played in the play room for a little bit, and then Grandma Hancock, Kathy Done, and Meredith came to visit with more food!! We want to keep saying thanks for all the food, it's been so great. The cafeteria food was okay for the first few days just because it was new, but certainly all of the food people are bringing has been so much better. Thank a million. A few friends and family went to our house yesterday and made sure everything was sanitized and clean, and I can't even begin to tell you how nice that is to not have to worry about going home to a mess. Thank you so much for that!! It's so hard to express our thanks in writing without any expression, but we hope you all know how thankful we are for everything. We also heard that there was a fast at our church for Elijah today, and we wanted to express our gratitude for that. I don' think that we even know how many payers there has been for Elijah to make it through this, but we can feel the strength from all of them. Elijah actually got out of bed and took a few steps for the first time last night, and today has walked across the hall to the playroom and has made a huge improvement even from last night. I can't believe how strong he is. This is why he has always been so strong willed, Heavenly Father knew he would have to be to make it through this. We are so proud of him. He is now starting to fight it a little because he s sore and exhausted, but we want him to keep going so that we can go home soon. He is still loving all of his movies, maybe he will be burnt out n movies by the time we get home. We can always wish!! We are looking forward to our yummy food tonight. We love you all!!

Friday, January 4, 2008

Sorry we didn't update much today, I've been lazy. Elijah slept a little better last night, but was still up for about half of it. We are hoping tonight he gets a full nights rest, and us too. Elijah had his day 8 bone morrow biopsy and lumbar puncture at around noon today. We had to go back up to the PICU because the doctors were concerned with him still being on the methadone and then adding the other medication they were to sedate him that it could compromise his breathing, so they were being extra cautious. I think that Elijah has surprised everybody enough that they don't want to take any chances. They were able to get the bone morrow pretty quickly, but they had trouble getting the spinal fluid. They poked him I think 3 or 4 times before they finally got it. He is a bit more swollen today and that didn't help. The oncologists came to talk to us early this evening and said that the preliminary results looked pretty good, but it's hard for them to put a number to it until they have the definitive results. He did say that he looked at it and he is pretty sure that is is more than 5%, bu not much. He said he thinks it's less than 10%, and hopefully not much over 5%. He was pleased and reminded us that considering the WBC that he started with, this was a huge jump down even though it's not less than 5%. I don't think that any of them thought it would be less than 5% because of his numbers to begin with. So we will plan on having the day 15 bone morrow biopsy (next Friday), and for sure by then it has to be less than 5% or they would have to intensify his treatment. We should know for sure on Monday the exact numbers. Elijah for the most part has been better today as far as his mood is concerned. He is talking a lot more and interacting more. He still doesn't like to see the staff come in his room, but who should at this point. He is being pretty good with what they need to do, and taking his oral medication without too much trouble. We finally got him to eat some chips today, we know not the most healthy choice but we wanted to make sure that he still knew how to chew and swallow!! This will hopefully continue to get better and easier. He has all of his tubes and lines out except one, his port. he was able to get his catheter out today while he was sedated. He even told us when he had to go potty and went in the toilet. Good Boy, mommy didn't do all that hard work of potty training for nothing!! We also got him to sit in a wagon tonight and took him for a ride around the unit and saw the fish tank and went to the playroom and picked out a couple of movies to watch. He isn't able to stand or walk yet, but when Levi picked him up to put him in the wagon He had him try and put a little weight on his legs. It will come one day at a time. I just can't wait until he is up running around again. It's amazing what you take for granted until it's gone!! So a pretty good day for the most part, and hopefully a much better night! We look forward to seeing some visitors this weekend, it's just been us the last two days. We can't wait to be home even though I'm terrified. Thanks so much for all the prayers and service. We love you all!!
Good Night

Thursday, January 3, 2008

I just put a new picture on and as I was looking through all of them that I had, WOW what an incredible change. Some of the first pictures I have are from when he was on the ventilator and swollen, and look at him now. I can't believe we have come so far when just 10 days ago we thought we might lose him. I can't even begin to explain how grateful we are for this miracle. Elijah seems to settling well in his new room and has become a bit more talkative and is smiling more this evening. We just got him some benedryl to try and help him sleep tonight. He did not sleep a wink last night. I laid in bed with him last night so you can probably imagine how much sleep I got too. At about 4am I finally went out to talk to our nurse because I had been watching him for awhile and he would close his eyes for a few seconds like he was trying to fall asleep, and then open them quickly and have a terrified look on his face as he grabbed the covers. It reminded me of when I've had a dream before of falling and wake up suddenly holding on to the blankets because I felt like I was falling. When I explained this to the nurse, she responded by saying that she has seen this many times with kids that are coming off of the dex (the sedation/pain medication he was on). she said it's not uncommon for kids to stay awake for several hours without sleeping at all. She says a lot of kids will stay up for 36 hours straight. This would have been nice to know during the day so we could have prepared with a nap or something. hopefully tonight will be better. It's better on this floor because there aren't as many bells and whistles and the nurses don't come in as much. We had taken the oxygen away from Elijah this evening really by just not paying attention, and he has kept his sats up great. The doctors are pleased and hopefully even when he gets sleepy, he won't need it anymore. That would be one of our hurdles done in order for us to be discharged to home. As we have talked with the oncologists here, I think we have all decided that we will just stay here until Elijah is stable enough to be discharged to home. We had planned to get him stable enough to transport him via ambulance to Blank to finish up, but there are some glitches with insurance and we don't want to chance having to pay any more than we are going to just because the doctors didn't label something right. If Elijah does really well, the doctors are hoping that by early next week, we could maybe go home. There are obviously a lot of variables that play into this, but that's at least a rough estimate. His bone morrow biopsy and lumbar puncture are scheduled for 11:15 tomorrow morning. he will be sedated and hopefully go smoothly. like Levi mentioned earlier, we are praying for that the bone morrow results will show less than 5% blasts. If not they will repeat this next Friday again and for sure by then there has to be less than 5% or they would have to intensify his treatments even more and his induction period would be extended. He also gets a heavy dose of chemo tomorrow, so probably he won't be feeling well again. he did get sick last night once and they gave him some nausea medication and it seemed to help. They will give that to him again tomorrow before they even give the chemo to try and prevent it, but sometimes they have to repeat the dose after. This was a big step for us today and it's nice to be heading in the right direction, even knowing that we will take some steps back from time to time. That's all for now. It's time to get some shut-eye. By the way, a huge thanks to Jen and DJ for getting some movies for Elijah that he hasn't seen before. He loves them, and so far that's all we have been watching over and over again. Thanks so much!! Love you all!!
Well, it seems like a long time since we have been here and it is hard not to be near all the people that we love, but some good news! Elijah is now stable enough that we moved down the the pediatric oncology floor! It is so nice to be making progress. If you would have asked us a week ago, things looked hopeless and never ending. We are so grateful to our Heavenly Father and all of you for helping us through this! So, for those of you that need it, the number to the room is 319-353-9493. Try our cell phones first in case he is sleeping, but if you really need to get in touch with us, then use that number. Elijah will be getting his bone marrow analysis again tomorrow and we need the prayers to get below 5% blasts. If he has less then 5%, then that is the best result we could possibly get and he would technically be in remission. The doctors don't think that is very likely considering the high numbers that he had, but it is possible, and that would be the best news so please keep that in your prayers. Once again, we love you all and are very appreciative of everything that you have done for us. We'll update later today.

Wednesday, January 2, 2008

Well, we have had a much better evening. Zach and Meredith came up with Isabelle and Ava and as soon as Elijah saw them his eyes lit up. He started trying to say some words and wanted to interact with them and play a little. It was just the medicine he needed. So thanks to you guys for making his day!!! Alivia came up too and mom and dad were so happy to see her. Since then Elijah has started to answer all of our questions with a nod, and also tries to say a few words here and there. The best thing is that we were able to get a little smile out of him. It's sooooo much better to see him this way. I'm going to try and put picture on here of him smiling. Also, his blow-by oxygen fell away a few times while the girls were here and he was keeping his sats up, so for right now the nurses said we could put it aside and see how he does. His O2 sats are hovering in the low 90's and if they drop below 90 they would want to put it back on, so we'll see how he does. They are also talking more about moving him downstairs tomorrow to the oncology floor, which would be a step in the right direction. Our care has been so great that we will miss the staff, but we are always happy to take the next step. We have had the most incredible doctor the last several days, we just can't say enough nice things about him. Today when I asked him if he was really going to release Elijah to the oncology floor he said, " yea, I think that would be okay, we just think he is so cute and like you guys so much that we were just trying to hang on for a few more days. But, I guess I have to cut the umbilical cord sometime." We really couldn't have asked for a better doctor (really all the staff) during this very scary time for us. It's so clear that all of the doctors and nurses do this because they love the kids, and it's not just a job for them. We will be forever grateful for all they have done for us, most of all for saving our sweet baby boy's life.
Elijah's hemoglobin also jumped up to 11.4 this afternoon from 10.7 at 04:00 without any extra blood. This has also made a difference I think in his energy level and spunk. The sedation medication is now officially off since 16:00 this afternoon. He is still getting the methadone, but they have also decreased the dosage and frequency of that and will continue to until it's gone. I know we will have some good days and some not so good days, but it sure is nice to see him responding and a little happier. We sure love our squirt and will love him through his good days and love him even more through his not so good days. Thanks for all your continued love, support and prayers. Things are getting better, but we sure could still use some extra prayers until we're out of this acute critical stage. We love you all!!!
We are a little sad because it seems like Elijah is mad at us and doesn't want to really interact with us at all. He is becoming more annoyed with the doctors and nursing staff when they want to examine him, so I know that the medication is finally wearing off. He has also tried to pull out his NG tube (in his nose) and we have to tell him that it has to stay in and so another reason for him to be mad at us. Good news, we had some poop this morning!!! It wasn't a lot, but more than the first time. The oncology doctors stopped by this morning and it was one of the doctors that we haven't met yet. She seemed very pleased with his progress. It's always nice to see them be pleased and optimistic. Elijah is still needing the blow-by oxygen to keep his sats up, it has fallen a few times and his sats drop pretty quickly, so it's clear that he still needs it. The oncology doctors said that they hope to get him to the oncology floor as early as tomorrow, but just like everything else we haven't gotten opinions from the other doctors yet. I don't think much is going on today with treatments for him, so we just have to hope that he starts to feel a little better soon and wants to talk to us. They did transfuse some blood last night and his hemoglobin is up to 10.4, which is almost within normal range, but he definitely looks better and is more alert. I will update later if there is anything to report.

Tuesday, January 1, 2008

We had sort of a slow day with Elijah. He was talkative in the nighttime hours, but during the day didn't want to talk. We can't decide if it is because his throat hurts, or that he is mad at us. It seemed to us that he was a little grumpy with us. We are sure that is because he remembers us bringing him to the hospital, and now he doesn't feel good, but he doesn't understand why. We will just have to make sure and love him and talk with him so that he knows that we love him. We also know that his hemoglobin dropped, so that would make him lethargic and pale. Otherwise, his numbers are still going the way that we want them to. His white cell count dropped to .6, so that is what we want. The oncologist also said that he would probably level out at about .4. We are hoping and praying that the bone marrow biopsy on Friday will show less then 5% blasts (cancerous cells) because that would technically be remission. When we asked the oncologist about it, he said it was pretty unlikely because of the number of cells he had in the beginning, but we can always hope and pray that it will happen. He is pretty strong and has been making all the doctors happy so far with the direction of his numbers, so maybe it will happen. They decided to transfuse him again because his hemoglobin was low, and the oncologist said that would probably be a fairly regular thing in the first 3-4 weeks before his body recovers and starts producing his blood again. Although the chemo targets mostly the more rapidly growing cells (white blood cells) it also kills some of the red blood cells and platelets, which is why he will need the transfusions so much. We would again like to thank everybody for helping and praying for us in this time of need. We especially would like to thank our family for all they have done for us. I guess that is why Heavenly Father made the family his unit of organization! Although we miss Alivia, we feel so lucky to have her taken care of by family that she knows well and loves. Thanks also to our ward family (I should say families since we have been in a couple of wards in the last year) for all of your support. I am sure that we will lean on you again in the months to come as he goes through his treatment for the next 3 years. It is time for us to try and get some sleep, we will talk to you again tomorrow. Good night and we love you all.
We got to hear our little squirt talk again after a week of nothing. He had been pretty sleepy most of the day until last night at about 20:00. We could tell he was trying to say something so we took off his mask and were able to talk to him a little bit. He was making all kinds of animal sounds. He doesn't have much of a voice, but it was so nice to hear him talk and be able to look at us. he has a lot of junk in his upper airway that he tries to cough up, but his throat is very soar. We had the mask off for about 15-20 minutes and his 02 sats were staying at about 93-95%, so our nurse got the okay from the doctor to just leave it off until he needed it. I think he was glad to have it off of his face. He didn't fight things like I thought e would. I thought he would be agitated and trying to pull things out, but he didn't really do that. I think that if he had more energy it would be a different story. Since he is anemic, and also still on some sedation he wasn't being very active. None of us got very much sleep because Elijah had been asleep for so long, he was ready to be awake. It was hard to try and fall asleep and miss something. He was wide awake and talking from about 03:00-05:00. He fell asleep and has been pretty sleepy since then. I might have a three year old that has his days and nights mixed up for awhile. We did have to put him back on blow-by oxygen after awhile of him being awake. Blow-by is just when they put the mask by his face and he gets it when he takes a breath. Basically, we didn't have to strap the mask back on his face, which is nice. He seems to be doing okay with that, but if his sats start dropping, then they would have to put the mask back on. He is definitely tolerating thing much better than I thought he would. They are going to slowly start weaning the sedation medication off, but very slowly. It will take a few days for it to be completly off. We are all going to try and nap when he naps today. See ya.