Tuesday, December 30, 2008

Hello everyone,
We wanted to give a quick update on Elijah. Some of you already know that Elijah is in the hospital as of Christmas day. What kind of a Christmas would it be for us if we weren't in the hospital??? We woke up on Christmas day and had a great morning of opening presents and watching the kids be amazed at what Santa brought them. It was great, but right after we got done opening presents Elijah said he was tired and wanted to go and lay down. Levi came back in the other room where we all were and asked me if I wanted to go and feel his head. I said, NO!!! He better not have a fever!" Well he did and so I called the doctor. We were able to give him some Tylenol and not have to take him in right away. His fever broke for awhile but after a few hours it was back and we had to take him in. We went to the ER hoping that his counts would be high enough to just give him some antibiotics and send him home. Dr Al-Zein saw him in the ER and I was a little pushy to have him discharge us. His counts weren't great (ANC was around 800), but Dr agreed to send us home if we would follow up in the clinic the next day. We went home and at about 5am Elijah woke up with a fever of 103 and hives all over his body. I knew that we were headed back to the hospital for admission at that point. We have been in the hospital ever since (which is why I have time to update our blog). Elijah's counts dropped over the first couple of days to around 400 ANC. They had stopped his chemo until his counts recovered. On Monday his counts were back up to 950, but he was still having the fevers and hives. Dr. Woods (new partner to the group) said that she had thought about sending us home since his counts had recovered, but she was baffled as to why he was still having fevers. They have thought all along that he has some virus because none of the cultures have grown bacteria. She told us that she wanted to give him one more day of antibiotics but she would probably let us go the next day. Then, because Elijah is Elijah and he can't be normal in any kind of way, he had two of the highest fevers he has had since he was admitted lat night (Monday night into Tuesday morning). One of them got to 104. She apologised this morning when she came to see him that she had told us that we might be going home, because he was going to be staying. Not only did he have those two really high fevers, but his counts that had recovered have now started falling again. Since Dr. Woods is new to the group I had to inform her of Elijah and his non-normalcy. I told her if she was thinking that he would do something then he would do the exact opposite. She decided to order a CT scan from head to toe to look for a source of infection, and really to start ruling things out. She said when he is on his 5th day of fevers, you have to start running tests to rule things out and not just rely on him having a virus. Elijah has had a couple more fevers throughout the day today and we haven't heard anything back on the CT scan yet. At this point it's hard to know what to think or what to expect as far as going home. Woody and Melissa (Levi's older brother and sister-in-law) have willingly taken the girls once again and we are so grateful to them for doing that. They have four of their own, so adding 3 more isn't an easy task. A HUGE thank-you to them for being so great!!! That's all for now, hope all of you had a great Christmas and have a happy New Year!! I'm starting to think that we will be ringing in the new year the same as we did last year, from our hospital room. Well, I do have to say that we are in much better shape than we were last year at this time and we are defiantly grateful for that. When we were admitted, Dr. Al-Zein told us that he was on his way to sign a DNR (do not resuscitate) order with a family whose little one was not going to make it. As sad as I was about being back in the hospital on Christmas, it put into perspective how lucky we were to just be in the hospital with a fever. We love all of you and hope you all have happy holidays!!
Love, Levi, Amanda, Michelle, Elijah, Alivia and Tysa

Tuesday, December 16, 2008

We're alive

I know you are wondering if we have dropped off the planet or are in witness protection. That is that we are all ok and have been very busy. We will be on in the next couple of days to give you an exciting, detail filled, riveting look at what we have been up to in the last month and a half. Thanks.

Friday, October 24, 2008

OK. The time has come again for me to update the blog. I had a slightly one-sided conversation with Amanda about whose turn it was (you'll find it's kind of the same conversation as when I tell her it's her TURN to change the diaper) to do the update. It went something like this. "Babe, it's your turn to update the blog." Arched eyebrow, no response. Again "Babe, you look great, it's your turn to update the blog." Smirk, no response. Again "Babe, you're the apple of my eye, it's your turn to update the blog." Small smile and BOOOM. "Sweety, why don't we count how many times I have updated, count how many times you've updated, subtract your number from my number, wait until your number actually reaches my number, and then it'll be my turn to update the blog." Ouch. Usually I win our verbal forays which probably explains why all my completely innocent remarks are usually greeted with silence. With that in mind, it looks like you guys are going to have to here from me approximately 39 more times until you here from Amanda. Weeeelllllll, on to the family business. I'll start with me and work our way down by age (feel free to enter a joke about the age difference between amanda and I because I had a couple go through my head). I am still working 7 bagillion hours at work every week. That still remains absolutely great. I recently had a stint of doctor visits because I thought I was having a heart attack. It turns out that I have an irregularity in my EKG that the doctor just want to "have checked out to eliminat any questions." She then proceeded to schedule it two weeks later. I'm thinking to myself, what if I have a heart attack while doing something totally normal? All who know me know what that is really code for, and if that happens, how is Amanda going to get out from under me??? Sorry mom, I know that is tacky but that is what I thought. I don't know the results yet, but I'll keep you posted. On to another topic that mom will love, it turns out I have hemmorhoids. Nice. I can tell you that the doctor owes me dinner after that appointment (and I watched her wash her hands). Other then those two things, life is pretty ok aside from the mild stress about the economy and owning my own business. One thing of note, I have learned a hard lesson on how I should control my temper. I was carrying a basket of clothes upstairs (barefoot) and stepped on a toy in the hallway by our bathroom. I was quite angry that toys had not been put away and promptly punched a hole in the bathroom door. I turned around and saw all the kids with wide eyes and fearful looks. Thats the last time I will let my temper out of control. Amanda is doing well for a person that has 4 kids, a slighty off-kilter husband and 2 dogs. I don't know how she stays sane becasue everytime I hear two kids crying, it is like someone is cutting my brain with glass shards. She has been on a kick of trying to get me healthy for some reason, but I constantly thwart her intentions. Michelle is doing well. I still have a hard time actually having a child that has reasoning of her own that sometimes might actually be right. I still have the trump card though "Becasue I'm the dad and I said so." YEAH. She is doing well and enjoys school. She is also in dance and seems to like that as well. Elijah is doing good. He was able to make a wish with the Make a Wish Foundation and he decided he wanted to go to sea world to see the animals, and kiss a dolphin, and watch some SHARKS. We are really excited to go and I think they are going to spoil him rotten. We still have the pleasure of giving him 3-5 medications every night, but he is getting better taking them. The doctor told Amanda that they want to increase the chemo dosage becasue it is not knocking his counts down far enough, but they have kindly consented to wait until after we get back from Florida. He also is still on steroids once a month, but it is a lower dosage so we don't get the I love you/I shall kill you looks 1/2 second apart anymore which shows something about me that I look back and kind of miss that. Alivia is doing great and gets more firey as the days pass. She is starting to spit out semi-recognizable words like juice (which happens to be jhoooo), Michelle (which happens to be shheeooooowww) and Elijah (which happens to be Yih-yaahh). She is a sweety and manages to smile and laugh while smacking her siblings. I think it's hilarious when I hear SMACK "Stop it Alivia!" Once again my thoughts turn to my own childhood. Tysa is doing excellent. She is sort of chunky, but we don't seam to have kids any other way. I'm convinced that if we had gotten Michelle while she was young, she would have started out chubby. Tysa is smiling alot, she learned how to suck her thumb, and is overall a very contect baby. For all who would like to come, we are having her sealed to us Thanksgiving weekend at the Temple in Omaha, Ne. With us will be a lot of the birth mom's family (my cousin Bridgette), so it will be wonderful for us to have them there to support us as we do this. Thanks to Bridgette for sharing this wonderful girl with us, and thanks to her family for supporting us as we go through this together. That is all the news that I have for now, for a more detailed and, let's be honest, accurate description of any points brought up in the preceding words, it's probably best to talk to Amanda. Thanks for all you love and prayers in our behalf! We truly can't explain how much you all mean to us, and how we are thankful for all the love and support we get. Love you.

Wednesday, October 22, 2008

Sorry for the delay

Just wanted to drop a quick note and let everyone know that we are doing ok. We have been VERY busy and also had to have Isaac re-set the password since they were the ones that set this blog up for us when we were in the hospital. I promise we will get on in the next couple of days and give a detailed and complete update. Thanks for all the love and prayers.

Thursday, August 14, 2008

Just a quick note......We got some family pictures taken and wanted to share some of them with all of you. I was really happy with how they turned out. I thought it would be massive chaos to take them all for pictures, but all of them really did well and were cooperative with the photographers. It's still a little strange to look at our family picture and see how much we have grown in the last three and a half years. I really thought three and a half years ago we would never have kids. This is awesome, even with the chaos, I am having sooooo much fun. I love it and I wouldn't trade it for anything.

Wednesday, August 6, 2008

Once again, we have been remiss in updating the blog. I will therefore endeavor to write what has been happening with a semblance of accuracy. I promise that my imagination will not contribute. I also promise that I will leave at least half of the information out since that is what I do, my calling as a man, my station in life. Poor Amanda married down heh heh. Anyway, we have had a good couple of weeks. Elijah is off of the steroids and his actions and emotions are much less of a roller coaster. He also has thinned down again because the steroids made him gain quite a bit of weight. He was eating for awhile during the steroid regimen, but that was as short lived as the steroids themselves. It did think it was pretty funny that Elijah, while he was puffed up and chubby, had a rather large belly. We were swimming and he looked at his tummy and looked up to me and said "I have a big belly like Dad's." How tender and sweet! We are almost done with the most intense phase of his steroids and will soon be going to the doctor only once a month. We did find out that he would be taking a low dose chemo every day in pill form for the next 3 years. We foolishly hoped that we would not have to keep giving him medicine every day but alas, that is not the case. Michelle is doing very well and getting ready to start school. We went and bought school supplies for her and I felt like an old man. I kept saying "This isn't how things were in my day. Why, in my day all we needed was a pencil box, some pencils and paper." Apparently I also walked to school uphill both ways in the snow carrying all of my siblings. She is pretty excited and I must say that I am so happy that we were able to get her a Hannah Montana folder for her. Oh joy. Hallelujah. Yippee. She was also excited that she was able to buy a backpack. It is kind of a luggage piece because it has wheels on the bottom and you can pull it. It seems to me that they should be able to carry their stuff, otherwise they might get fat (says the fat dad to the skinny hyper youth). I must confess that I was also pretty excited to get my first eye roll from Michelle and I could see the thought flashing across her face "That is the stupidest thing I have ever heard and will not dignify that with a response." At least she is smart enough not to actually say that. All kidding aside, she is excited to go to school and we love having her as a part of our family. Alivia is still doing well. She is the one that we might have to worry about when she is older. I find it mildly amusing (very mildly) that if you try and grab her hand to lead her where she wants to go, then she will jerk her hand out of yours and sort of run away. It is hilarious when she does it to Michelle, not so hilarious when she does it to us. We are still unsure as to what to do with her since our other children are all mellow. I always come home and am prepared to see her walking around the kitchen, right arm swinging wildly, going for Elijah or Michelle to annoy them in some way. It is kind of fun also to watch her grab Elijah's blanket, juice, toy, food, or anything else he might have and look up at him to see how long it will take him to yell at her. She does it with a smirk on her face, and all I can think of when I see that is "My poor parents.". How fun it must have been for them to see me antagonize Isaac until he smacked me full force in the back with a broom handle. Or watching me push Zach around because he was too skinny to hurt me. Or watch me put Angela in my movie for school and call her a serving wench. Or watch me make Melanie cry because I told her that she was faking her vibrato when she sang. Or watching me slap the glasses off of Jenny's face (she got the best of that one, she can punch reeeeeeallly hard). Or watching me convince Jordan that it was ok to slide off of the roof on a saucer because the 6 inches of snow would pad his fall (this was a failure because I went off first with Zach and couldn't hide the pain when I thought I pushed my coccyx into my throat). Or . . . I couldn't do anything to Woody because he as an evil imagination and would win. Period. I digress. The point is, I shall reap what I have sown as a youth and am not looking forward to the harvest. Tysa is doing very well. She is finally sleeping through the night which is great! For Amanda. I must confess that I didn't get up very often, but I think I commiserated well her when she told me about it. She is a cutie and we love her. Also, a big thanks and a large hug to our friends the Hancocks who moved to Idaho this week. Bill (Beeeaal) and Georgia are our long lost (he would say bastard) southern brother and sister. It is hard to describe how much they meant to us and how we will miss them. Bill was so very thoughtful and did Elijah's adoption pro-bono when he first starting out as an attorney. He is a spiritual giant and we will miss his sense of humor, his humility, and his love for god and the gospel. He would tell us about how the lord had to make do with him in the callings that he was in, but everyone who knew him knew that there wasn't another person as diligent, as kind, and as thoughtful as Bill. Georgia was always next to Bill with a twinkle in her eye and a smile on her face. I will always admit that my wife is the one who does all the work and makes me who I am, and I know that Bill feels the same way about Georgia. She is a great woman. Bill and Georgia, we love you more than we can ever express and hope to see you soon. Also, thanks to all of you who are too numerous to name that have helped us. All of my family (and I mean all, even those that I am not able to talk to much) thank you for everything you do. All of Amanda's family. All of our friends. Thanks for all the help, the prayers, the thoughts, the calls to see if we are ok. Thank you from the bottom of our heart. I am going to stop before I start crying (all who know me very well know that it is a distinct possibility, especially if there is an opossum who is dying). We love you all.

Wednesday, July 16, 2008

Well....Amanda has been very busy and so it is my turn to create the blog. I know that many of you are ecstatic that I get to wax poetic about how things are going with our family, but try to contain your amazement at my mastery of the english language and sit back to enjoy this verbal feast. Things have been going well with our family. First and foremost, we were able to go to the temple and have Alivia sealed to us. Poor girl is stuck with us as parents for eternity! AAAAAAHHHHHHH! Oh well. She'll have to make do. All joking aside, we are thrilled that it is finally done. Thanks to all who helped us through the heartache of thinking we would lose her. Elijah is doing well, he went through a round of chemo that included steroid treatments. Yikes! We lovingly like to call him Mr. Angry during this process because the steroids made him freak out at the smallest provocation. Amanda has two pictures that were taken about 25-30 seconds apart and in one he is smiling, and in the other he is yelling. Fantastic! We also added another to our family. We welcomed a young lady named Michelle to our household. She just turned 10 and is fitting in very well with us. She is remarkably helpful and is a sweet girl who is happy to laugh and have fun. She especially loves all of her new cousins like Isabelle, Ava, Tia, and Abby. Tysa is doing well but still eating every two hours. She must be related to all of my thin relatives because she doesn't seem overly big. She is starting to get a little chub though. Amanda is not yet bald from pulling her hair out, but I think it might happen in the near future. I try to ease her burden by antagonizing her (only in order to make her laugh. Oddly, she doesn't seem to laugh as much as I do. HHHmmmm). She is a great mom and wife and we all appreciate her. I am sure that she will update you all soon with more information but in the meantime, thank you all for your thoughts and prayers. We would not make it without that. Thank you also for your willingness to drop what you are doing and help out when we are in the hospital with Elijah for a week (especially Woody and Melissa who took all of our kids for 3 days. YIKES that is 7 kids 10 and under!!). We love you all.

Wednesday, June 11, 2008

Hi there all! First and foremost thanks for all of your prayers, Elijah's bone marrow is CLEAN!!!! This was great news and we are so thankful for our blessings! They also did a spinal the same day as the bone marrow ( which was the most awful day of pokes) , and his CSF (cerebral spinal fluid) had lots of WBC in it. Dr Al-Zein said that it had about eight times the number of white cells that it should so they decided to send it for culture. The culture came back with three different kinds of bacteria in it so it was necessary to do a repeat spinal. Dr. Al-Zeins thoughts were that there is a good chance that Elijah had a viral meningitis when he was in the hospital this last time. He kept spiking fevers and they kept running tests, but nothing came back positive. He finally stopped the fevers and we were able to go home on Thursday with no answers as to why he was having the fevers. Now we may have the answer, and he thinks that the reason he has WBC's in his CSF is left over from that virus. They repeated the spinal today and gave me a call this afternoon with the report that he now has a normal amount of WBC's in his CSF. Dr. Al-Zein expects that the cultures will all come back negative. We should know that tomorrow. Elijah has started on the next phase of chemo as of Friday called Delayed intensification. I think that the last time I said he had started a phase I stated it was this one, but that one was actually inter-maintaince. I'm trying really hard to keep everything straight!! This phase is basically the first two phases (induction and consolidation) put together. So yes, he will be back on the dreadful steroids that make him a different person. We are not excited for this, so we are hoping that the next month goes by fast. On the other hand, the steroids should make him want to eat us out of house and home. This is what they told us the first time and it never rang true so we will be anxious to see if happens this time. Elijah also received the first dose of the medication that is replacing the one that he was allergic to today. He did fine, other than the shot part, but luckily no allergic reactions to this one so far. It was funny to watch the anxiety of the nurses in the clinic after they administered the shot, just waiting for him to puff up. Elijah gets really blotchy skin after he has been crying and one of the nurses said, "now did he look like this before we gave him the shot??" I assured her that this is a normal response to him crying and not an allergic reaction. We should be done with the big pokes for awhile. He will receive a total of 6 shots with this medication that he will get every other day, starting today. Lots of trips to the clinic, bummer!! Elijah is doing a Zoo Camp this week every morning and seems to be loving it!! It was nice to finally get him doing something outside the home and away from me a little. He was great with me dropping him off, which is a little sad, but I'm just glad he didn't have bad separation anxiety.

Alivia, Tysa and I have gotten to spend some extra quality time together with Elijah being gone in the mornings this week and it's been fun to spend some time with just them. Alivia is good and busy as ever. Tysa is as cute as can be with her little dimples and little bit of chub that she is getting. She is starting to smile more and eating more if that's possible. She is probably close to around 9 lbs and is eating 4 oz at a time now. She is still up a couple times a night, but I can hope that that will get less and less the bigger she gets. She is still only as big as what some babies are born at. Elijah and Alivia really love her and want to be close to her all the time. I was totally expecting Alivia to be jealous when I was holding Tysa that she would want to be held. Really she just gets mad because she wants to hold Tysa, not that she wants me to hold her. She likes to squeeze extra tight when she holds her, not really getting the gentle concept. Elijah is a great big brother and helps out when he can. Tysa is now realizing when she is not being held and much prefers to be held. She lets me know it, and how do you not hold such a cutie!! She might be a little spoiled, but then I think all of my kids are a little. I am going to post some new pictures, thanks again for all the continued prayers and support. We love you all!!

Tuesday, May 27, 2008

Yet another long stretch and it's time to update a little. Never a dull moment at the Hancock residence. Things have been good (and busy) since we got home with Tysa. Elijah just loves her so much and even Alivia is doing better than I thought she would. She like to hug her and squeeze her. There has been a few times when she has needed me and I'm feeding Tysa, so she is a little jealous but for the most part doing quite well. This last Saturday Alivia ran a fever all day and had been feeling crummy for the couple of days before that. I thought she was trying to cut teeth, but on Saturday night her fever got to 104 and she didn't want to walk on her right leg. I wanted to cry, we have played this game before!! We ended up taking her to the ER because we didn't really know what to think. Her white count was high and she has a virus called hand, foot and mouth. This is the third time she has had this in the last few months and it is highly contagious. I was trying to be so careful with my immuno-suppressed child and newborn baby, but Elijah ended up getting a fever last night (Monday) and we had to come to the hospital with him. Alivia is doing better and is staying with Woody and Melissa ( Thanks soooooo much to them!!!). We are so lucky to have such a strong support system around us and people so willing to watch our kiddos on a moments notice, even when they are sick. We are currently at the hospital with Elijah and Tysa. Elijah is doing okay, but as of about an hour ago has gotten another fever. We were supposed to be leaving in the morning, but I don't know now?? Elijah is showing no signs of the virus that Alivia has, so we don't really know why he is getting fevers. Dr Al-Zein was in today and I talked with him about a few different things. First, Elijah has been complaining lately that his legs are asleep. It's hard to know what he is feeling, but I can tell it's something. Dr. Al-Zein said that he might be developing some nerve issues from the chemo meds that he has been on the last couple of months. He started him on a new medication for it and also is starting him on physical therapy. The second thing that Dr.Al-Zein talked about was his numbers. He has been watching some of them the last few weeks and they just aren't where he would like to see them. He wants to do another bone morrow next Friday to make sure his bone morrow is clear of leukemia cells. I guess because Elijah is in a high risk category, he wants to pay close attention to this. He ultimately said that he isn't happy with the way his numbers are right now. This makes us very nervous and we are praying that everything is still okay and that he is just trying to break more records (not really). Lets all keep our fingers crossed and prayers are always appreciated!! I'll try to keep everyone updated in the next couple of weeks when we find out anything more. As for our third and newest child, she is awesome. Absolutely adorable and really an easy going baby. I weighed her tonight at the hospital and she is a whopping 8lbs!! She eats great and now that she is a bit bigger, she is starting to sleep a little longer at night. She is still very alert a lot of the time and even smiles a little. I know it seems pretty early for smiles, but she has done it enough to be more than just gas. We are so happy to have her in our family and truly appreciate the opportunity. We love all of our kids so much and feel blessed to have such a great, busy group. Love and thanks to all of those who continue to give us support, you mean the world to us. Love you all!!

Tuesday, May 6, 2008

Here is a link to some of the cutest pictures you have ever seen!!! This was the photo shoot that Holly surprised us with. It was so fun!! Huge thanks to Holly!! These pictures are only going to be there for viewing until May 16th, so don't miss out...

Monday, May 5, 2008

Hi there all!! Wow what an emotional few days. We are all doing well and we are so blessed to have Tysa. She is sooooo precious and so far is a great baby. Tysa is very content and is alert a lot of the time. She has beautiful brown eyes and beautiful skin. She is such a petite little thing. I'm use to handling babies, but I haven't held or taken care of a baby this small for a long time. She has soft black hair, long fingers and long feet. So far, I have had to wake Tysa up at night to eat and just today we have heard how she can cry out loud. As I'm sitting here writing this Levi is holding her and we are having a big laugh because she just filled her pants in a way that I would have never thought someone so little could do!!! The newborn diapers are huge on her.
On Saturday we went to Bridgette's (Tysa's birth mother) caseworkers office to sign all the paperwork. This is a much different situation than we have ever taken part in. We have gotten very close to Bridgette and I can't begin to explain how hard it is to watch her grieve so much. She has been absolutely incredible and her strength is truly amazing. We have never gotten this emotionally involved and it's a very different feeling than we have ever felt. I have always known that a birth mother is a special person and the most selfless person. These statements have become more evident to me in the last four days. I have a hard time feeling like we are the ones causing Bridgette all of the pain that she is feeling. I know that everything that she is feeling and doing is very normal, but like I have said before we have never watched from this angle. I'm so glad that she feels comfortable with us and she has said numerous times that we are the best parents and she is so glad that Tysa s going to have us as her parents. She is being a great mother by giving her child what she feels is in her best interest. Please keep her in your thoughts and prayers to be comforted and stay strong.
We are missing our kiddos like crazy!!! We have checked in every free minute that we have had and it sounds like they are doing great!! We can't wait to bring this sweet baby home to meet them and start our new routine. We can't wait to introduce Tysa to all of you and hope that you can stop to see her, she's worth it!! That's all for now, hope to keep updating and get home soon. We Love you all.... A huge thanks to all of you who have taken care of Elijah and Alivia. We thank you from the bottom of our hearts!

Thursday, May 1, 2008

Tysa Marie has arrived!! Weighing in at 5 lbs and 13 oz. She is 19 inches long and has lots of black hair!! Sooooo cute!

Friday, April 25, 2008

Hi all. Have a few things to update on. I misspoke with the last post, Elijah is in the inter-maintence phase not delayed intensification. I think this has been the hardest on Elijah for quite awhile. The medication he is on is really doing a number in him. He feels soooooo lousily. He has no energy and absolutely no appetite!! He is taking two to three naps a day and he literally eats a couple bits of food a day. The doctors put him on an appetite stimulant to try and get him to eat. He grew 2cm, but he has lost a pound and so they were concerned enough to give him medication to get him to eat. Dr. Al-Zein said that if this doesn't work then they would have to look at alternative method like a feeding tube. I said no way!!! I am trying to do anything to get him to eat. He also has an extremely heightened sense of smell. Everything smells bad to him and I think that also has made food taste bad to him. I'm ready for this phase to be over already and we have about 8 weeks left. The worst part for me is thinking about leaving for Utah to meet our new baby and having to leave him for a couple of weeks. He just hasn't been himself with all of this and I haven't been away from him for a day since he got sick. He tells me all day long that he is tired and that's what he was doing for the two weeks before he was diagnosed, so that freaks me out a little and of course I think that maybe there is something else wrong that we don't know yet. I can't imagine if something happened to him while I am gone. We are leaving him in good hands, but I'm still pretty stressed about it. Poor little guy, I just want him to feel better soon. We are also keeping a close eye on his legs. A couple of weeks ago Elijah told me that his leg hurt and at first it didn't occur to me that this is a symptom to watch for during this phase of his chemo. He is getting a drug called Vincristine that can cause toxicity and the first and biggest symptom to watch for is leg pain. He was walking a little funny and Dr Al-Zein noticed so now if he mentions anything with his legs then they will give him yet another medication for the toxicity. We were back in the hospital last weekend just overnight becuase Elijah spiked a fever. Turns out, both of his ears were infected. He hasn't had an ear infection since he was 15 months old!!! What the crap. Luckily we got to go home the next day since his ANC was high enough. They would have kept him for the normal three days if his counts would have been low. I think we have just had bad luck with ears lately, Alivia is getting tubes in her ears on Monday.
The kids and I decided to come to Kansas with my sister this last Wednesday and stay through the weekend. It has been a good trip other than the occasional bad mood from Elijah. We went to the zoo on Thursday and have just been hangin' out the rest of the time. Actually pretty relaxing and just nice to get away from everyday life in the doctors offices for awhile. Levi and my mom came tonight (Friday) and we are all leaving on Sunday. I am going to put some updated pictures on finally, sorry it has taken so long. Baby day is getting closer, we are so excited!! Talk to everyone soon. Pray that Elijah will feel better soon. Love you all!!!

P.S. Hi Kami. So good to hear from you. I checked this last time we were in the hospital and you weren't working, but we will try again next time. It would be great to see you.

Tuesday, April 15, 2008

Hi there all! We are doing well. Elijah, Alivia and I all had a long and rough day on Friday at the clinic starting Elijah's next phase of his treatment. He started Delayed intensification and it was a big day with lots of expectations from him. Everything was traumatic and now that Alivia is finally walking, she was a handful on top of it. He had to have a spinal to put a medication called methatrexate through his spinal fluid. It took FIVE pokes to finally get this done and you would think I would be use to seeing him suffer. I am here to say, I believe no matter how long we have been doing this, it doesn't get any easier to watch him have to go through these very hard times. We are better now, but it's days like that when I honestly wonder how much more I can take. After a few good days, or at least not so bad days I feel like I'm ready to conquer a little more. Alivia is a busy body and into EVERYTHING!!!!! I guess we knew this was coming. She is still pretty cute!!

On another note, I think it's time we make it official and let those of you who don't already know our new news! We are expecting a baby that will be joining our family in May. It's coming right up and we are super excited to be growing our family by yet another one. (No, I'm not pregnant)! It will be another little girl and her name will be Tysa Marie. Please pray for us, HaHa.
Love you all!!

Wednesday, April 9, 2008

WE WON!!!!!!!!!!!!! We are finally done with Alivia's battle. The apalette court sent the ruling down and affirms with the district court!! YEA!! Here is her in her blessing dress that we will finally get to use, and very soon!!

Thanks for all your prayers and support along the way.
We LOVE you all!!!

Monday, March 31, 2008

I figured that it's time to write an update since we have been admitted to the hospital twice in the last week and a half. Our first heart pounding experience was about a week and a half ago when we were at the clinic for elijah's weekly chemo treatment. He received a chemo drug called PEG Aspargnaise (sp?). When we were in iowa city they did teaching with us about this drug and told us that it is the most highly allergic chemo drug that he will receive. They also told us that most patents won't have an allergic reaction to it with the first dose, it is usually with subsequent doses. When he received it that day I hadn't been thinking about that and wasn't prepared for what happened. Within a minute or two of giving the dose, Elijah's face started swelling. First his eyes, then his nose and eventually everything else. It was so scary. They immediately gave him epinephrine and then some benadryl. This helped, but he stayed swollen for the rest of the day. They kept us for a couple of hours and then sent us home when he was stable. Almost as soon as we got home he started getting hives. He bod became covered in them and so we were instructed to give him benadryl every four hours. By early evening, this wasn't cutting it. He was miserable and looked awful. The doctor then decided to prescribe a steroid to help. The part that made this even more interesting was that the doctor seemed to be in denial that this was truly a reaction to the PEG????? An allergic reaction to this medication use to be much more common because they use to give it through an IV. They would have the reaction almost immediately, because that's hat happens when it goes directly into the blood stream. Now they give it as an IM (intra-muscular) shot. They have less reactions, and when there is an allergic reaction it doesn't happen usually for 30-50 minutes. This is because with an IM shot it is a slower release, and therefore a longer period of time for a reaction to occur. The doctor was saying that it must be a fluke or wondered if when we were all holding him down for the shot, someone was holding his head too tight. I was a little baffled that he was really trying to blame this n something else because of the history of allergic reactions to this particular drug. He said that he shouldn't have had a reaction that quickly after administering the drug. I questioned him to see if it could ave been from the other medication that he received that day, and he said for sure not. So after that I thought is he really trying to blame this on something else??? Moving on with this story, the next morning he was still braking out in hives and mid morning was lying on the couch watching a movie. He had been coughing on and off for a bit and Levi and I wondered if his throat was irritated in some way from everything. The next thing I knew he went to say something to us and his voice was raspy, and then quickly lead to almost a whisper. I FREAKED!!! I thought that his airway was starting to close again and called 911! I might have over reacted a bit, but I think this young man has given us one too many close calls in the last few months, and I wasn't messing around. Within a couple of minutes we had several emergency vehicles outside our house and our neighbors were probably wondering what the heck was going on. He was still a little raspy and his lungs weren't clear when the paramedics listened to him. Levi had talked to the doctor and he told us to head to the ER, and so we told the paramedics that we could take him but they said since he didn't sound clear, had hives everywhere and was so young that it was safer to have him ride down in the ambulance. I couldn't really argue since I did call them to come and help. The problem I saw with this situation is that if his airway did close, there is nothing I can do at that point to help him. You can't give mouth to mouth without a functioning airway!!! Anyway, we ended up staying over night to make sure he wasn't going to have any more problems, and got to go home Easter Sunday in the afternoon. Needless to say, I know carry an epi pen with me so that I don't have to be so quick to call 911. The doctor said that it would be more cost effective. HaHa!! He continued to have a rash on and off for a couple of more days, and then has been fine since. We were back in the clinic this last Friday and he received more chemo. (By the way, the doctor said that he finally proved that he did have a true allergy to the PEG, and will not be receiving this drug anymore) On Saturday I noticed that he was starting to cough a little and have a runny nose. I had been sick a couple of weeks ago and thought that since he didn't get it when I did that we were in the clear. Well as most of you know and have probably experienced, everyone has had a little touch of some kind of sickness, and if you haven't you can consider yourself very lucky. So there is no telling where he picked it up, but he did. He went through the weekend with a low grade fever, and finally about noon he spiked to 101.8. I called the doctor and he teased me by telling me to bring him to the clinic and if his counts were high enough then we could just treat him at home. Well, this last Friday his ANC was around 1600, so I thought there might be a fair chance that his ANC would still be good enough to go right back home. No such luck, in the last few days Elijah's ANC has dropped to around 200. Bummer!! So we are stuck until at least Wednesday, and hopefully no positive cultures. Dr. Al-Zein mentioned the words, "we want to make sure it's not his port that's not infected." I hadn't thought about that because I assumed it was all due to his cold and cough. We're praying that it's that and not his port. When we got admitted today there was another interesting story that I was told. There was another young boy that received PEG in the clinic today and had the exact same reaction as Elijah. As it turns out, it's really uncommon to have had two allergic reactions within the same couple of weeks. When I was talking with one of the nurses, she said that it's been at least a year and a half since they have seen a patient with a reaction. They are looking into the batch of PEG, because both were from the same LOT numbers. Dr. Mitchell said that they decided to go ahead and just admit him because they learned their lesson. I told him that we were glad to be of assistance.

My sister had a baby in February and his pediatrician admitted him to the hospital today too! Turns out, it's not a good day for my side of the family. Please keep both of us in your prayers. Love you all and I will put some new pictures on when we get home and get the camera back. I have some great swollen face and body rash pictures. Good Night!!!

Monday, March 10, 2008

WOW!!! What an awesome support system we have. We never expected the benefit to turn out so great! A HUGE thank-you goes out to our friends Kevin and Jennie for organizing it for us and also to all of our friends and family that helped make it happen. There were so many businesses and volunteers that donated items for the auction and raffle and that really made it great. It was truly incredible to us haw many people stepped forward to help that we didn't even know, so to all of you thank-you sooooo much. I hope everyone had fun and I think that we had lots of people walk away with some pretty neat things. THANKS again so much for EVERYTHING. We appreciate each and everyone of you. Elijah is doing well. His counts were high enough to start chemo again this last Friday and so having a couple weeks off of it made him feel pretty good. By the middle to end of this week I think I'll be singing a different tune. The doctor said that by the end of this week his counts will be low again and we will possibly be in for more transfusions and possible fevers. Not looking forward to that, but this really is the roller-coaster that Elijah will go through for the next few years. It is nice to have at least a couple weeks of break. Today we went to see a pediatric surgeon to discuss putting his port back in. He scheduled this for tomorrow because he wants to got this done before his counts are too dangerous to put him through surgery. It will sure be nice to have his port back in, but I hope and pray that it won't get infected this time. So now every time we go to the clinic I will put a numbing cream on the port site because they will have to access it with a needle for all of his treatments. So I will update later this week with the details. Love you all and Thanks again for everything!!!!!

Tuesday, February 26, 2008

Hi there all!! We were able to come home on Sunday afternoon. Dr Al-Zein said that he was breaking his own rules because Elijah's counts had dropped even more, but he trusted us that we would bring him back if he got a fever. Nothing grew on the cultures and he stayed fever free so thankfully we were able to come home. It was the first time I had heard Elijah say that he didn't want to come home. He was having so much fun with all of the toys and felt fine, not to mention he had mom and dad 24/7 with our full attention!!! I would be loving it too. After the first day of pokes, they weren't really doing much to him so he thought it was a-okay! We are back to our normal routine now at home and it's just much better for all of us. We are continuing to do the radiation this week, and I can't wait for it to be over. Today was the first time he has been in a good mood to start, and actually woke up in an okay mood too. I had his favorite chips waiting for him so I think that helped!! We will for sure remember that the next couple of days. I had the radiology tech take some pictures of him with the radiation mask on and the machine they use so I posted those for everyone to see. The mask is actually a little disturbing. Good thing he has never seen it or even know that he wears it! Elijah will probably be getting more blood and platelet transfusions in the next week or two. He won't be getting anymore chemo until his counts (his ANC) are up to 750. Since they are at about 20 right now, Dr. Al-Zein said that it might be a couple of weeks before he can start up again. This also means that as long as the ANC is low, he is at high risk of fevers and hospital admissions. Lets all pray for big numbers next time he has his counts checked. That's all for now, Love you all!!!

Saturday, February 23, 2008

Just a quick side note that I forgot to mention in my latest update. Some friends of ours, Kevin and Jennie Heileson, are having a fundraiser in Elijah's behalf and I wanted to give the link to the blog that Jennie made to share the flyer with all of the information on it. The address is www.elijahhancockfundraiser.blogspot.com. Check it out, it's going to be a fun night!!!
We didn't have a very good day on Friday. We are now back in the hospital as of about 5:30pm yesterday. BUMMER!!!! Elijah spiked a fever and to the hospital we came. We were in the outpatient clinic yesterday and Dr Al-Zein said he couldn't believe he hadn't been in yet because his ANC has been low for a couple of weeks. I think he jinxed us!!! He also got this very unusual hives/rash that no one can explain. The chemo meds that he received yesterday are the same ones he has had for the past few weeks, so it's unlikely he had a reaction to them. The resident this morning said that it could be something viral he has especially since he had a fever, but there is really no way to tell right now. As soon as I get a camera up here, I'll take a picture and show you what I'm talking about. This was a crappy ending to a VERY long week. He has been pretty grumpy. They have to put him to sleep every time they do radiation and he is usually fine before he goes to sleep, but then wakes up in a funk. The radiation itself takes a matter of a few minutes, it takes longer to get him asleep then the actual radiation. One more week of that and then we're done with that part of it. We haven't talked with Dr Al-Zein yet, but we are assuming we will be here for the 72 hours it takes to get the blood cultures back and then we can get back home. So far he hasn't done too bad here in the hospital, normal fighting is all. They had to draw blood from his line and from his arm, and it took a couple of pokes to get that. It's amazing how strong a three year old can be when he's angry!!! Well, that's all for now, I'll update later when we know more. Love you all!!

Sunday, February 17, 2008

Yes, I know it has been far too long since I updated. Not that I'm trying to make excuses, but we have been having issues with our service since we have been home. It truly is awesome to be home. "There's no place like home." Elijah has done pretty well and knock on wood has not had a fever!!! We have been back and forth to the outpatient clinic three times for further chemo treatments. Elijah is now in the second phase of his treatment, called the consolidation phase. The doctors told us that with the chemo durgs he would be taking he would feel very lously and one of the major side effects would be that they would drop his counts. Were they ever right!! Two weeks ago Friday Elijah received a transfusion of blood and then this last Friday he received a transfusion of platelets. His ANC is also very low, so EXTRA careful right now to say the least. He has otherwise done okay with everything. He has started to get sick occasionally, but he usually gets sick and then immediatly after looks at us and smiles. Elijah also starts his radiation tomorrow (Monday 18th). We had to go for the consultation and get him fitted for this mask that they use for the radiation. He has to be in the same exact position for this every time he goes. He will get a total of 8 radiation treatments Monday thru Thursday of this week and then the same for the following week. When we went for the consulation, they did a test run of the sediation that they will use. They used the same drug that they used for him in Iowa City when he was intubated, called Profofol (sp?). It worked well, but like always he needed just a little bit more than normal. The sediation team that worked with him is great. They don't hesitate to give him what he needs to stay asleep, and still be safe. It will for sure be a long week of driving back and forth to the hoispital every day. Elijah really seems to be a different person since we came home. The week before last he starting showing great signs of improvement. We showed him him how he could stand up on his own and it didn't take him long to get the hang of it. He can now go up the stairs himself, but goning down he still needs a little help with. It's amazing how much he has had to learn again. It's like having to 1 year olds. Speaking of 1 year olds, Alivia has had a rough few weeks. At first I thought she was detoxing from all the attention she got while we were in the hospital. Then I realized that not only did she have ear infections, but she was also trying to cut 6 (yes 6) teeth all at the same time!!! I don't know whats more difficult all at the same time, or one here and there over a peroid of time. She was not sleeping and did not want to be put down, EVER!!! She is starting to do better now, but her mouth really did look painful for a couple of weeks. Hopefully she will be done for awhile!! On Friday the doctors told me not to be surprised if Elijah gets a fever this weekend because his ANC is so low, and now that it is Sunday afternoon I hope that we can make it through the rest of the week too!! I can't imagine the day he has to be admitted back to the hospital, eventhough I know it's coming. I hope people haven't stopped reading this blog because I didn't update for so long. Please pass the word that I'm back online!!! I will try to keep you updated on the progress of his radiation. We love you all!!

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!!