Easy Peasy

I have to say I love being in maintenance. Ian had his appointment for the month yesterday and everything looks great. He got a big dose of chemo, he will be on steroids for 5 days, and then just the oral chemo for the rest of the month. Can Santa penalize little boys for being grumpy and naughty when they are on steroids? If so, Ian is in big trouble. Luckily the Santa I know is pretty understanding.

Lauryn was sick on Sunday so to be safe, I sent her to work with Mike so she wouldn't be around the other kids with lowered immune systems. The last thing we want to do is get everyone sick for Christmas. I had totally talked up how much fun Emma would have with Ian because they have a big playroom and usually have some kind of craft going on as well as Wii's and a huge movie selection. Well, I think Emma was wishing she was sick and that she got to go to work with Mike by the end of it because they just opened a new floor for Leukemia patients and there is nothing there. They have really big rooms that you hang out in but there is no common area where you can play with toys and the other kids so the time went by pretty slowly. They will eventually do something to change that I am sure, but for now, I know to bring more entertainment for us. The good thing is though, Ian's doctor is on the new floor on Mondays and part of Tuesdays and on the old floor on Thursdays. We almost always have Thursday appointments so we will get to meet on the floor that is more fun.

By the way, I was only joking about the whole Edward/Jacob name thing. I know I am a dork, but I am not THAT bad. (If you are not a Twilight fan, just skip over this paragraph, you wouldn't understand). Besides, even if I wanted to, I don't (not that there is anything wrong with it for those of you who do) Mike would never allow it. But like I said, I don't want to. Really.

Our Family's Big News

I am not one who likes a big deal or a fuss made over things, especially when it centers around me. For example, the day I got married was so embarrassing for me. I hated all the attention and about died when I had to kiss Mike in front of everyone at the wedding.

With that said, I have been keeping a secret for quite some time now. This will probably explain a lot for those of you who have noticed I am more flakey and appear to be eating too many cheetos. I didn't want the fuss and I also knew that while many would be thrilled, others would think that we are CRAZY. However, I cannot keep quiet on this matter much longer for it is starting to become obvious. Most of you will be surprised to hear that Ian will be getting a new baby brother in May. Yes, it was planned and yes we know what we are doing. Ian is doing very well with his treatment and we are in a place where we can physically and mentally handle this. I feel great and the kids are SOOOO excited. They keep telling me that they wish it was May already. We had the ultrasound today and the baby boy looks healthy.

The first my own family heard of this news was today. They are excited but can't believe I waited so long to break the news. At least it will go faster for all of you now.

Ian said he can't wait to teach the baby how to play Lego Star Wars and is more than willing to share his room. I am sure he will try to put a lightsaber in his hand the second he comes home from the hospital.

We are trying to decide on names. Any suggestions? I am kind of thinking about Edward or Jacob.

I Love My Rascal

Ian has been a rascal from day one. He had that little twinkle in his eye right from the start. At 4 months old he would purposely look everywhere except at me. I would even get right in his face and he was able to avoid my gaze just to be a stinker (come on, am I that hideous?). When we go on errands to the store I see his little hand fly out as he is using "the force" to open the automatic doors. He is constantly stealing things from me or the girls so that we will chase him around the house to get it back, all while running and laughing the whole chase. He upset the girls because we had just finished decorating a gingerbread house and while we were upstairs getting ready for bed, he snuck down and ate all the gumballs and gumdrops off the house.

The rascal traits I absolutely love in him are also going to be the ones that cause me to go prematurely grey. I was at the gas station and I meant to simply start the pump and sit in the car as the car was filling because it is FREEZING. I turned around to get back in the car, and lo and behold I see Ian sitting in my seat laughing hysterically at me with all the doors locked. Me being the genius that I am, had left the keys in the ignition and my coat on the seat. I knocked on the window and he simply laughed harder at me. It took me about 5 minutes of pleading and begging and bribing before he finally unlocked the door. I told him that it wasn't funny to which he replied "Yes it is." I didn't know if I should laugh or keep up the pretense that I was mad so I kept on my biggest poker face and drove away. Lesson learned. I will never leave the keys inside the car again.

He knows how to push everyones buttons and while he can get us all worked up, he can also be the sweetest little thing. Out of the blue he will tell me that I am his best friend. He loves to snuggle and cutely sticks his feet and arms out on my lap when we wants a massage. He understands so much of what is going on. I know I never give him enough credit for it. Last night he told me, "Heavenly Father and Jesus are helping me get all better." He is doing great. We only have to go to the hospital for treatment once a month now. He is on a low dose of oral chemo that he takes every night without complaint. He has a ton of energy and isn't nautious. His hair is growing back in and he no longer looks like the pale, frail, boy he was 6 months ago. We are still limiting how often we take him in public and are careful about where he goes to try to avoid infection or illness so many of you may still not have seen him around, but he is doing well. I feel so blessed.

Ian's Thanksgiving Day Weekend

I just barely got the results from the kidney scan and VCUG Ian had done last Tuesday. Although his right kidney has enlarged significantly since his last ultrasound, it is still functioning as it should. The Doc felt we could continue to watch it at this point and not have to do surgery or anything at the moment. He will have a follow-up appointment to have another ultrasound done in 3 months so hopefully, it will be the same or better. The original hope was that it would correct itself on its own so we'll just sit tight and wait. I have hope it will do just that.

Ian's grandparents came in for Utah for Thanksgiving and he was spoiled rotten of course (we all were actually). They unloaded present after present for the kids and they are still on a sugar high from all the treats they were given. I barely had to lift a finger as they suggested that we go out for Thanksgiving. We ended up having a nice relaxing dinner at Mimi's cafe. They served turkey and all the trimmings. Easiest Thanksgiving I ever made! All I had to do was make reservations.

On Friday, we went to Independence MO to the LDS vistor's center there. We have been meaning to go for a while but this was the first time we actually made it. They had a big Creche display with 300+ different nativity scenes. The kids loved the playroom. It had a covered wagon with a play horse pulling it that you could sit in and pretend you were driving, a well with a bucket you could lower and raise, and a little house with dishes and stuff. (I forgot my camera, bummer). We also headed over to the Liberty jail. Ian was so excited and kept saying, "We are going to jail!" It is usually not a good thing, but I let him be excited instead of explaining that to him.

We (Mike, his parents, and myself) learned the hard way that we are to never again play a game of chickenfoot with Ian and the girls. They absolutely smoked us! We didn't stand a chance of winning. Unfortunately, it wasn't just once. It was night after night. It was an absolute embarrassment. The kids had a blast though and were so proud of their winnings.

We also spent a lot of time going through old family videos (some much older than others). It is amazing to see how much Ian has grown in the past 6 months. I don't know if he would have shot up like this on his own, or if some of it can be attributed to the steroids.

I was horrible about taking pictures when they were here. Mike got a lot of video though so I'll have him turn some into still shots and then we'll post it so you can get an idea of the weekend.

Ian's Big Weekend

I realize that this should have been written on Monday for the title to make sense, but time always seems to get away from me. Ian's Nana and Grandman were here for the weekend. It was cute because he was so excited to see them, but shy at the same time so when we picked them up from the airport, he had a blanket over his head. The blanket slowly (about 2 minutes) worked it's way down and he had a blast the whole time. He informed Nana that she could sleep in his room but he was insistent that Grandman sleep in our basement (it's unfinished, not luxurious at all).

It took about 10 minutes and Nana already had the kids going on Thanksgiving Day Crafts. They made turkeys with tailfeathers by tracing their hands and feet and Indian headbands. Ian had an appointment on Thursday and his counts were up to 1090 so we went to the movie theater and saw what my girls really wanted; High School Musical 3 (don't waste your money). We also had brunch with my Aunt and Grandpa and then visited with Grandma. As if that wasn't enough, we also went to the Arboreteum and a park to try to take advantage of the nice weather on Sunday. Ian did more in 3 days than he has done in the past 3 months.

His next appointment is on Tuesday. He is having a kidney scan done (VCUG) and should be getting a dose of Vincristine so he should be nice and nautious for Thanksgiving. Luckily the Zofran seems to works pretty well so he should be able to enjoy it.

I promise to be better about posts. Sorry to keep you hanging for so long.

EMO, EMO, EMO

Somehow, I always forget the effect the steroids have on Ian's personality. The first couple of days I am always thinking, "Man, this kid is grumpy, he needs a nap." and then the lightbulb comes on and I remember it's the meds. This week has been no exception. He is so completely Emo. A perfect example for you is just about 10 minutes ago, Ian told Emma he wasn't going to play with her and be her friend because she called what he calls medicine "pills." He freaked out started crying and was yelling, "It's not pills, it's medicine. It's medicine Emma." Pretty much the same thing, but I know better than to even try right now. He'll get over it in a few minutes and then I'll talk to him when he is calm. It's pretty comical actually since I know he'll be completely different in a few days once they are out of his system. I can deal with this short term.

Ian had an appointment 2 days ago for his kidney. When he was born, he had what they call hydronephrosis which is where the kidney gets larger because it isn't draining right. They have done a few tests, and it seems to function fine and the last few ultrasounds looked like it was pretty much staying the same size or even getting a little smaller. I figured, as the doctors did, that he might grow and fix the problem (they believe it is due to his renal tube having a kink in it and they thought as he grew, the kink might straighten out). Unfortunately, the doctor said that his kidney has swollen significantly since his last ultrasound 2 years ago. They are going to do one more test (VCUG) to see if it is functioning properly. If not, they will have to perform a minor surgery to fix it. It is supposed to be pretty simple especially because the kink is closer to the kidney than to the bladder. We may not have to do anything though. It is all going to be based on the results of his VCUG. I hope it's ok. I'd hate to put him through anything else right now. He's already been through the wringer and he isn't even close to being dry.

We Are There!!!

Yesterday, I received a package from a very darling person (who wishes to remain nameless). Inside, was a decorated mask for each of us and supplies so we could embellish the ones we have here as well. My girls were actually excited to put them on and wear them around. (I will upload a picture of them wearing them later today when they get home so check back later to see it). I never did have a chance to get the supplies myself. It seems like if I made it out, it was for the bare essentials like milk or bread and I never thought about it until I got home. Thanks for hooking us up.

Ian had an appointment this morning and he caught a little cold on Monday so I pretty much knew that his immunity would be too low for him to start maintenance. The doctor and nurses seemed to agree that we would probably be delayed another week. They drew his blood and we waited for nearly two hours before we heard anything. His Doc peeked her head in all excited and said "We are there. We're good. He's at an 850."

He got an LP today- the first one he's had in a while. He starts on steroids again for the next 5 days, so it won't be anything like the first round where he was unrecognizable because he got so huge and he goes on an oral chemo as well. He has the green light to play with friends (as long as they aren't sick) and we don't have to be quarantined anymore. That's right, we can actually leave the house! The sad thing is, we are so tired from being at his appointment at the crack of dawn that we aren't doing anything fun today until we can get a nap in first. I am so glad he can still enjoy some nice weather though! We are going to be busy these next few days and try to get a month of being cooped up out of our system. (That also means we don't have to wear a mask right now, so we only got to enjoy the cute ones for a day. Should his counts bottom out again though, we are pulling those out).

Things are going to slow down now. We don't have to go in again for 2 weeks, and that will just be labs. They said it is possible his immune system levels may drop again, especially at first while they play around and adjust his chemo levels, so we still have to be careful but we don't have to walk on eggshells anymore.

My Little Faker

So, everyday, Ian runs around, jumps on my bed, chases his sisters, you name it. Anything a typical little boy would do. About a month ago, he started complaining that his legs were hurting (which they probably were at the time because leg cramps can be a side effect from the vincristine). Feeling bad for the little guy, I decided to rub his calves for him. Well, I guess I did too good of a job, because every night since then at bedtime, and bedtime only, he has complained that his legs hurt. I was really feeling bad that he was going through such an ordeal until about a week ago when he started saying my arms hurt too. Now his back hurts as well. Uh huh. He's no dummy that's for sure. I wish I could have a massage every night before I went to bed. (I am going to feel really bad by the way if there is any truth to his pain, but it seems a little suspicious, don't you think)?

The Physical Therapist's Assesment

Yesterday Ian had a follow-up with physical therapy. They wanted to check out his arm and his leg since they had been paralyzed and then weak after his stroke. Ian was completely nervous and not the most cooperative at first. He kept hiding behind me and peeking around every so often. Eventually, we lured him out with a ball. He would chuck it at the P.T. and then run and hide. Once he realized it was going to be a pain free, poke free, visit, he warmed up. The physical therapist checked him over and told us that it was one of the rare instances where he could happily say that he looks fine and there is no lasting effects from the stroke. He absolutely couldn't believe it after reading his file. He said we were incredibly "LUCKY". I completely disagree. We were/are incredibly BLESSED.

Ian's hair completely thinned out after this round of chemo, but instead of falling all the way out, it stopped. The hair that was left was completely frizzy, course, and fried. So, Mike shaved it off last night. There was less than a handful when all was said and done. I was so worried Ian would be upset because it was so traumatic for him the first time around. Mike told him that he was going to get rid of the dead hair so that new, pretty hair can grow in. Ian was fine with that and proudly told me "I am going to have pretty hair come back." I think he has also noticed that a lof of the other "friends" from the hemoc floor are bald too, so he doesn't feel so different. I must say, if he has to be bald, he is lucky he has a good shaped head for it.

Back in STRICT Quarantine

I guess I should really stop giving away the theme of the email in the title if I expect people to read on. Otherwise, they will know everything in about 3-4 words. Anyway, we went in today bright and early. I honestly didn't think Ian would be ready for maintenance today but I expected his counts to go up since he hasn't had chemo for a few weeks. Unfortunately, he dropped back into the 200 range. Dr. Max said that it happens all the time. He could be fighting off a bug he picked up or something which would have caused it to drop again. So we are delayed a few more weeks. It could be worse though so I really am grateful that overall he is doing amazingly well.

Last time we were in, the nurse who saw us (not our usual one) told us we had to be at 1000 to go into maintenance. His nurse practioner today though said that it only has to be at 750. So that is great news. All the quicker we can get there. We will just chill out this week and see what his next appointment brings. Maybe we will be pleasantly surprised.

The Clot is....

I never heard anything from the hospital so I called on Friday after lunch time. My doctor and her nurse were off that day so I left a message for the nurse on call. She got back to me around 4:30 and said it looked like the clot was gone but she wasn't sure if I could take him off the Lovenox or not since it wasn't exactly 6 months yet. I seriously think I am probably one of the biggest pests EVER but the hospital didn't call today and I really wanted to know the results and the pharmacist needed to know if he needed to prescribe more medicine or not so I made some calls, again. Well, it turns out that the clot is GONE so they are going to take Ian off of Lovenox!!! No more shots twice a day for him. I don't think I am even going to recognize his legs in a week without bruises all over them. As weird as it sounds I was kind of nervous at first to stop giving him the shots; not because I love it so much, but I was just worried that his blood might clot again and he'd have another stroke. The nurse assured me that the PEG which caused the clotting has been out of his system for a long time so I feel better.

Ian has an appointment bright and early tomorrow morning. If his immunity counts are at 1000, he will start maintenance. I don't think they will be that high yet, but you never know. I am guessing he'll be in the 700's. Lets say 760. Any one else want to take a guess? I'll let you know who the winner is tomorrow.

Is the Clot Gone?

Ian had an MRI today to see if the blood clot he developed as a result of one of the medications was gone. I anxiously sat by the phone all day to hear the news, but no call. I guess I shouldn't be surprised; it took them a good day and a half last time to give us the results so hopefully I'll know something by lunch tomorrow. If the clot is gone then Ian can quit getting shots! Poor little guy has only had 2 shots a day, everyday for the past 6 months so I think we paid our dues.

I always get so nervous when he has to be sedated and put under. Everything went really well with the procedure though. I thought he would freak out because I walked with him to the door of the MRI room and then they took him from me and walked away. He had a look of panic on his face but they said he was fine. After the procedure, they told me not to let him walk on his own for 3 hours up stairs or going into the house or anything like that. We walked in the door and I figured he was safe so I put him down. I wish I had the video camera!!! He was hilarious! He was completely staggering and unable to walk in any resemblance of a straight line. I had him lay down on the couch and watch a movie and he was a lot more stable after that.

They took his blood and sent it to the lab in radiology so when we went up to the hemoc floor afterwards, they had all his info already. We got to turn around and walk out the door since his hemoglobin levels looked good and he didn't need a transfusion today. Also, his immunity counts have come up some. Last week he was 220 and today he was 600 (the range for a healthy person is between 5000-7000). We still can't be schleping him around town but we don't need to wear the masks 24/7 around him either unless we know for sure we are sick. Once Ian's ANC hits 1000 he gets to start maintenance so it shouldn't be much longer!!!

Long Day Today

Ian and I just got home from the hospital and I am beat! We were pretty much there all day. Ian's hemoglobin levels were low so he had to have a blood transfusion. I should have known it was coming; they had warned us that it probably would happen. I also thought he looked pretty pale on Monday but he has had so much energy that I didn't think much more about it. It takes about an hour for the blood to arrive once they order it and then it takes 3 hours to give it him plus the initial time we were there waiting on labs and stuff. It was a long day but we are home and luckily didn't have to stay overnight or anything.

His immunity is even lower than it was last week. It pretty much got cut in half from a 480 to a 220. Another week for the family wearing masks. They've been pretty good sports about it except for a certain 6 year old who shall remain nameless. The masks are a total pain but it is worth it if it keeps Ian from getting sick. Maybe it would be cooler if they had glitter or something on them. Maybe we can sit outside and personalize them. Thankfully, the weather has been perfect, so as long as they stay outside, they can keep their masks off which means they really don't have to wear it much. Hope the weather holds.

Planes, Trains, and Automobiles

Many of you have wondered, "What do you do when you are quarantined? Don't you go stir crazy?" Well, let me attempt to give some answers to those questions now. Since we can seriously only handle so much of the Lego Batman, Lego Indiana Jones, and Star Wars games, we had to find some other things to do. Ian, out of the blue, decided that we would build an airplane to fly. It would be an understatement to say that it would be a challenge for all involved and it is definitely not on a 3 year old level (even though I think Ian is the most brilliant 3 year old I know-did I just insult all of my friends?). Let me rephrase. He is the most brilliant 3-year old named Ian I know. Mike came up with a solution to please all. He picked up a simple model airplane kit; no engines, no remotes, no chance of crashing and destroying the hundreds of hours of work in 30 seconds. They have spent the past 3 days, gluing, assembling, and painting some kind of bomber airplane (I am such a girl- I have no idea the name of the plane- B-52???). Well, Mike mostly did anyway. Ian's help consisted of a constant stream of questions such as," What is that?" and most importantly, so it was repeated the most, "When will it be done?"

I am happy to say that we have a very excited little boy tonight. His airplane is done and he is so thrilled!!! We are going to hang it from his ceiling on some fishing line. Maybe eventually, he can get a whole collection going.

Now that I got the plane explanation out of the way, here is the explanation for the relevance for the trains and automobiles title. After being so sick of the XBox games that I was seriously hoping the Xbox would break, we pulled out his actual Legos in the attempt to build some of the cool train and car sets he has. I don't know what it is with these little annoying plastic things. First of all, you can never get them seperated! I had to eventually break them apart with my teeth (right now my dentist who reads this blog is either cringing, or is excited for the future crowns I'm going to need). Secondly, I never see them laying around anywhere and his box looked chock full of parts, yet we went through train, after train, after car, after car, unable to complete any of them because some crucial parts were missing. Finally, I ended up with a hack job of a mini truck that he could play with. None of the colors matched and I think some of the wheels were even different sizes. He didn't seem to mind one bit though.

His little friend the spider (see earlier posts if you have no idea what I am talking about) has been MIA (missing in action) this past week. At first, he was completely pacified thinking it had gone into the bushes but he is starting to get upset that it hasn't been around. Can you tell that we need a playdate with REAL people? A spider is his only little friend that he can look forward to seeing right now.

His next appointment is on Thursday. Hopefully, his counts will be back up, although, it sounds like that isn't the norm. This round of chemo should knock him out for at least a few weeks. Until then, we will continue to find ways to entertain ourselves.

Our Reality

Let me forewarn you before you start reading, that this is a very sad post. I debated on if I should even write about this or not because I have tried to keep the blog informative yet uplifting. As I thought about this, I decided that this will pretty much be Ian's journal of his whole experience and I need to write all my feelings and emotions as we go through this journey of making him well.

A little 4 year old girl who went to the clinic with Ian just passed away. She was diagnosed with a brain tumor 4 months ago. She was in the PICU because she had come down with pneumonia and she died from complications with that. I can't begin to tell you how saddened I am by this news. I can't even imagine what this family is going through. At the same time, another little 1 year old named McKensie is battling for her life. She desperately needs a bone marrow transplant surgery and has come down with a serious infection and is unable to go to surgery until she recovers. Time is ticking away and the longer she waits, the less of a chance she has that the bone marrow transplant will be successful. In addition to keeping Ian in your prayers, please remember these families and all of his other friends at Children's Mercy who are in a daily battle for their lives. I know how much prayers can strengthen and uplift us and our children. I know that I am not making it on my own strength and I am blessed to have so many of you praying for us regularly.

News like this hits far to close to home as you can imagine. This is the reality we live in right now. Of course I have had my moments where I wondered if Ian would pull through or not. His immune system is in a very weak state right now and has no protection from any kind of illness. We are keeping him quarantined, but with the sick season kicking in, who knows what the girls are dragging in from school. I actually went to the store today to purchase a mask for each member of our family. I figured, we could sacrifice and wear them anytime we are around him for the next couple weeks or so until he gets into the maintenance mode because I have seen to clearly what a simple cold can become.

However, to not become too downtrodden I have to remember the two blessings that Ian was given that promised he would be well. Truly our Father in Heaven knows what the outcome will be and I need to continue to remember to trust and have faith in his plan. I felt the spirit so strongly and I know it was there to comfort me and let me know that the words being spoken were true and from Him. I know that as much as I love my little guy, our Father in Heaven loves him even more than I can comprehend and he knows what is best.

Life is such a precious gift. I feel like this experience it truly helping me to become a better mother. I have so much more patience. I have been blessed with wonderful, loving kids and I truly appreciate being around my children. My priorities have changed. Where most of my time was spent cleaning and fretting about everything looking perfect, there is now messes. Meals are simpler as I spend far less time in the kitchen now. Less time is spent in the car as some of the girls activities have been cut down. Nothing is more important than spending my time with Ian and the girls. The day will come when I can focus more time on what I used to, but it is not today. Today is for them and I wouldn't have it any other way.

Report of the Day

Ian had an appointment today. They pretty much checked to see where his blood levels are and to give him a dose of chemo. His immunity is gone so we are completely in quarantine. The computer was actually really slow this morning and I didn't know where he was when I left but I thankfully had him in a mask on the way to the car. However, I took him to the Deanna Rose farmstead in the afternoon without a mask thinking he'd probably be safe since we were outside. We were there a few minutes when I spoke with the nurse and she told me he was neotropenic (basically no immunity) which means he can't even go to a park. She heard all the noise in the background and asked where we were so I told her. I could tell that it was not smart of me to be there by her reaction so we instantly left. I hope Ian didn't pick up any germs because of his clueless mom.

I noticed his hair has started looking thinner and when I brushed my hand across the top of his head, he was shedding. Dang. I totally thought we were going to somehow beat the bald since we've gone so long without the chemo effecting him. Oh well. There are worse things by far. Hopefully it will start growing in before it gets too cold. Mike has said that if he gets upset by it, he will let Ian personally shave off his hair so they can be bald together.

I thought this was hilarious. Ian and I went through the bank drive through yesterday while the girls were in piano lessons to make a deposit. They gave him, not one, but 2 lollipops. I thought he would eat both for sure; but I was wrong. He finished one, and paitiently held the other for an hour waiting for the girls to be done. He told me, "I am going to give this lollipop to Lauryn when she is done with piano. She is going to be so happy." I started to think, "Oh how sweet." I no sooner finished that train of thought when he added with a huge grin , "And Emma will be so sad." He totally didn't care about making Lauryn happy as much as ticking off Emma. Such a little stinker. I have to say though, she kind of brought it on herself. They have been pushing each others buttons these past few days. Ah, siblings.

We Are Home!

We came home from the hospital yesterday evening, but I was too tired to write anything. I tell you, I don't know how they expect anyone to get well when they wake you up all night long. It seemed like I would just barely fall asleep and then the nurse made me wake up Ian and have him give a urine sample. This continued on every 2 hours all night long. I do not do well being woken up so it is simply amazing that I didn't rip the nurses head off or do anything to embarrass myself. Ian handled the whole thing much better than I did and was completely full of energy and in a great mood the next day.

About an hour before we were supposed to be discharged, Ian's urine came up with the slightest trace of blood. One of the concerns with the chemo is that it can eat away at the lining in the bladder (I think this one was called cyto... something. There are so many, this is the 5th different type that he has had). So, we had to wait while it was sent to the lab for a full analysis. Luckily, everything was fine but it was a little disconcerting for a moment to think we were going to have to extend our stay.

We have also added another chemo (ARC)regimen that he gets as a shot; so now we are up to 3 shots a day. Fortunately for him, he only gets this particular shot for 4 days before he gets a little break from it. He is such a trooper about his shots. It makes things so much easier. It would be hard to have to fight him everytime and I am so grateful he is being cooperative.

If all goes well, this should be his last overnight hospital stay and we are getting closer each day to starting the maintenance phase!

Back in the Hospital

Ian got admitted today but don't worry, it is actually a good thing. We knew there was a possibility of him being hospitalized today; it's a standard hospital stay that everyone has to do. We just didn't know if his counts would be high enough or not, but thankfully they were. I am glad we can do this now and continue to move forward instead of having to put it off and wait. Now we can start the maintenance phase that much sooner!!!

He has been in such a good mood. Last time, he cried almost the whole entire time that he just wanted to go home. Luckily, Lego Batman came out today. I brought it to him while he was still in the hemoc clinic and he was so excited to play it, he could barely wait to get up to his room (lets not lie here, I was pretty excited myself; and by the way it is the hardest out of all the Lego games). I don't know how or when I turned into such a nerd.

Anyway, he is getting a few new kinds of chemo. One of them is very taxing on the bladder and kidneys so they are keeping him hooked up on an IV and monitoring his fluid intake/outake very closely. From what I understand, he can also have an allergic reaction to it as well so I had to bring along the good old Epipen. Hopefully we will not need it.

We are in a really big room as far as hospital rooms go. We are actually in the bone marrow transplant wing of the Hemoc floor. It is completely secure and you have to go through 3 sets of doors to get in that won't open until the other one shuts. In between the doors, you have to wash your hands before exiting the final set of doors that lead to his room. We are only in this section of the hospital because the other beds were full so hopefully, this will be our final visit to the marrow transplant floor.

The photos are from his hospital stay today. In the first one he is getting ready to go for a ride on his IV stand and as you can tell from his smile, he's pretty excited about it. The second shot, we are getting a break from our room and he is playing a game of pinball.

Benefit Concert on Friday

I know that I am several days past due writing up on this, and I am sorry, but for all of you who have been in major suspense, your wait is over.



The benefit concert on Friday was a huge success. Many of you have asked me how it came to be, so I will backtrack a little. Phaedra, who is my very talented harp teacher was the link between us. A former harp student of hers, comes from an extremely musical family and when they heard about Ian, they wanted to help. Lynne and her son planned and organized the whole event. When we arrived, they gave us some VIP passes. I have to say, I have never been a VIP to anything before so I was feeling pretty cool. We were able to go to a room in the back and have all the sandwiches, chips, cookies, and drinks we wanted. I know my kids had their fair share. Ian was wearing a mask since we were indoors with a big group of people and it was completely orange from doritos by the end of the night.



The concert had 6 bands playing. All of them were from the Christian rock genre and they each played for 30 minutes each. The were anywhere from a single guy with a guitar/keyboard to a group of singers with a back up band. It was uplifting and entertaining to watch. Unfortunately, I had to leave early with Ian to get him home and give him his meds so I didn't get to see the last acts, but the whole thing was videotaped and from what I understand, it will be posted to myspace so you can see it for yourself. I will get the link on here ASAP. I will also see if any of my pictures turned out and try to post them on here tomorrow so check for them (I am far to tired tonight to do it).



Ian was the star of the show. They had photographers and videographers that were following him around just like the papparazzi. I don't think he understood why there was so much attention being given in his direction. There was a big screen behind the bands that would rotate different pictures of Ian. He kept noticing pictures of himself on the wall and thought it was really cool.



I was so touched at all the effort and time that went into planning this concert for us. I was also touched at all the friends and even complete strangers that came to this concert to show their love and support for Ian and our family. So many of the people that were there came up to us and let us know that they are praying for us and thinking of us. I am amazed at the outpouring of love and support that is given to a little 3 year old boy whom they have never met. There are so many wonderful people out there. I left the evening completely humbled and uplifted. I am truly grateful that this whole experience with Ian is teaching me how to serve others better and things that I can do in the future for those who may be dealing with some hardships.



I also know that there was some concerns on the part of those of you who could not make it that I may not feel supported if you weren't there. This is absolutely not the case. I know there are so many things you have done already and are doing behind the scences, so please do not feel bad in any way for not coming. I know we are loved, I know you are praying for us, and I know you would do anything asked of you. That means more than you will ever know.



A special thanks again to the Valle family for making this all possible. You are wonderful!

Eight Legged Friend

I don't know what it is but my family loves bugs. They most certainly did not get this trait from me. We have had a HUGE spider spinning webs on our porch for the past 2 months, yet I got specific instructions from Mike that I was not allowed to kill it unless it came into the house. Ian has taken to watching the spider and gets excited as he sees a fly or knat get trapped in the web. I hear the question, "Are spiders nice or mean?" at least 10 times a day from Ian. My reply is "They are nice" as any other answer will not suffice. He will keep asking me until he hears that they are nice. Then he always follows it with, "They help us by eating the bugs."

The past two days have been raining a ton thanks to some of the tropical storm clouds blowing this way. Ian was devastated to look out the window and see that his little spider friend was gone. With tears in his eyes he asked me where it was. I am not a spider expert by any means so I hoped I would be right when I said, "Don't worry. He is just hiding from the rain. He'll be back". Ian kept checking the window for hours and no sign of the spider. I could see that he was getting frustrated with me for telling him something that was wrong. The more time that past without a sign of the spider, the more worried he got. I started to think the rain had washed the spider away and we would never see it again. Thankfully, before the sun set, it showed up again, spinning a new web. (I cannot believe I just said I was thankful a spider showed up. What is wrong with me?) Ian yelled to me, "Mom, the spider is back. It helps us eat the bugs."

I love how he gets such joy from simple things like spiders. I wish I were so easy to pacify. I don't know what we are going to do in winter time. Anyone know where I can get a real looking fake spider?

On steroids again

Ian started on steroids again (his last dose hopefully) and woke up totally EMO today. It is crazy that these tiny little pills can completely turn your little boy into someone almost unrecognizable. They not only change him physically (see pictures from a few older posts back to see what I mean), but they make his emotions go crazy. One second he is laughing, the next he is crying, the next he acts depressed. Oh well, he only has to stay on them a week this round so that is nothing compared to what we've done in the past.

I am not exactly sure what the next appointment will bring because the nurse and doctor never came and spoke with us yesterday but I am pretty sure that next time if his counts are high, he gets hospitalized so they can do the last of the hard stuff before we get to enter into maintenance.

FINALLY, our 3 year old is potty trained. He was so close before being diagnosed with Leukemia and then once in the hospital and after, he completely regressed. It was fustrating knowing he could do it, he just plain refused. I tried not to push him too hard because I figured it was the only thing he could control in his life. He had to succumb to taking the most horrible tasting medicines everyday, to getting shots twice a day, going to the doctor to have blood drawn every week while hooked up to IV's getting all kinds of medicines, etc. He was just finally ready though and pretty much did it on his own. Yeah Ian!

I was in a totally dorky mood today and I typed up this poem. I am no Robert Frost, so feel free to stop reading now. I'm probably going to be really embarrassed tommorow when I reread it and see how lame it is.


ODE TO STEROIDS

Ian is starving from the steroids he on
So he comes in and wakes me at the crack of dawn.

I am utterly slow getting out of bed,
so he pulls off my covers while tapping my head.

Half asleep I begin to pour him a drink
Then I try to make food as quick as a wink.

Waffles, corn dogs, soup, chips, meat,
Are a few of the things that he wants to eat.

Out of the blue he laughs for no reason,
then he begins to cry for a season.

He ravagely eats all the food that's in sight,
and then he gratefully gives me a kiss goodnight.

The bags under my eyes, my tiredness they tell,
but I'm grateful he's here so it's worth getting him well.

Ian's Appointment Yesterday

It was funny, when we checked in yesterday, the nurses could see that Ian was not feeling well so they told me, "We are going to put you in the comfy room. It has two recliners and a wii Ian can play so that you can be comfortable." I was feeling pretty cool like we were getting some kind of special treatment until I saw the sign "Isolation Room" on the door. I love how tactful they were about it! I guess that they felt Ian actually was sick yesterday from a virus, not from the chemo. They said the chemo usually only makes them sick the day they get it or the next day, not 6 days later. Good to know. I was worried that the chemo was finally kicking in and that is what we had to deal with the next little while.

Anyway, Ian's counts were high and he was able to get all the meds that he needed. He is feeling GREAT today and is really playful and energetic. He was also supposed to start losing his hair today, but no sign of it (ok, now I just jinxed him). Maybe we'll be lucky again this round.

Poor little guy

Today was the sickest I have seen Ian so far. We got home from doing errands when he told me his tummy hurt. I promptly gave him Zofran but unfortunately it was too late. He threw up about 10-15 minutes later. He went from bed, to couch, to floor, to chair, then switched from his blanket, to Lauryn's blanket, then Emma's. He just couldn't get comfortable. I felt so bad for him. I guess one good thing about being sick is you get access to all the good meds so I was able to give him some oxycodone and some more anti-nausea meds a little later and he was able to relax and go to sleep.

It's totally my fault. He's been fine so I haven't been giving him Zofran because I didn't think he needed it. I guess I need to stay on top of it. Sorry Ian.

Benefit Concert for Ian

I thought I'd let all of you know about a music concert that will be held for Ian. A very talented musical family we met through my harp teacher has a band that plays Christian rock music. They have been busy organizing and preparing to hold a benefit concert for Ian. It will be on September 19th in Blue Springs MO.

If you are interested in learning more about it here is the URL:

http://www.myspace.com/iamlovedtheconcert

If you scroll down to the bottom of the page, they also have a place where you can sign up for email updates and more information on this upcoming event.

I am so touched at all of the effort and time they have spent on this for us who are practically strangers to them. One of the many upsides to our current situation is I am learning in ways that I never would have learned how I can be of service to others and it has made me more aware of others in similar situations. I am truly learning how serve by being served. Thanks to all of you for everything you've done and continue to do for our family.

New meds, new worries

I just did something I wish I wouldn't have done; researched all the side effects from the chemo that Ian just started on Tuesday. Normally, I wouldn't freak out so much. However, due to our track record where we seem to be the small minority that has the undesirable rare side effects to medications, I am feeling very unsettled at the moment.

The new chemo that got added into his regimen is called Doxorubicin. It is nicknamed the "Red Devil" because of everything associated with it. One of the many side effects is that it can effect the heart and damage the muscles. He has to have recurring EKG's while on it and then an EKG every 2 years for the rest of his life.

Ian has had some very strange peeling of his hands and feet. He looks like a snake about to shed it's skin except there are also some deep cracks and stuff as well. This medication makes any healing that the body needs to do significantly slower so I am trying to keep it bandaged as well as I can so he doesn't get infected hands or feet.

Many of you have asked me what you can specifically pray for. These next few weeks, pray that Ian's heart will not be damaged from this chemo and that his hands and feet can heal.

I am so grateful to all of you for your thoughts and prayers. I know I rely so much on your strength. I know I'm not alone!

Ding ding ding - Round 3

Ian's counts are back up. He headed in for round 3 yesterday morning. He had to have another LP (spinal tap) and 3 different chemos given to him. In addition, he continues to receive his Lovenox blood thinner and is starting up the steroid for 7 days straight. This is going to suck! The doctor said to expect his hair to fall as if he were a cat shedding hair. It gets in the clothes, the bed, the mouth, yuck! They told us that teens have recommended the use of lint rollers to pick up the hair. If Ian has a problem with it and is too shocked I have agreed to let him personally have a go at shaving my head. Corie will video tape it of course.

The past two months have been almost 100% maintenance and have given Ian a chance to recover from his weight gain and painful joints. Take a look at the three pics below to see how much he has changed over the past 5 months:

April 22, 2008
Day after Ian was diagnosed with ALL

May 22, 2008
Ian's last day on the steroid

August 22, 2008
The most recent picture of Ian

It's been a long 5 months...definitely the longest 5 months of my life. But whenever I think of complaining about the long hours in the office, the hours spent stuck in traffic, the annoying extra trips to the gas pump to fill up after hospital runs, the additional money spent to entertain Ian and his sisters, etc., I sit back and remind myself why it's all worth it.

We are truly blessed to have this tiger in our lives. He makes it all worth while. Goodnight.

Thank you, thank you, thank you!

It's been a while since I personally have written to Ian's blog. I want to take the time to personally thank everyone who has done so much for us and for Ian. Let's see if I can list them all (if I miss someone, please don't be offended, it's been a long 4 months and I can't possibly remember EVERYTHING people have done for us).

• "The Jeff's" who came to the hospital to give each of us blessings on the day Ian was diagnosed.
• BJ VanOrman who made us cookies and visited us in the PICU.
• Austin Lanning, Todd Furstenau, Dan Torrez and my next door neighbors who mowed our lawn so many times.
• Amy Stevenson and Laurie Furstenau who cleaned our house the first week Ian was hospitalized.
• The many friends and neighbors (can't list them all there were so many) who prepared meals for us.
• Our friends (Macarthur's, Stapley's, Furstenau's, VanOrman's, to name a few) who have taken our kids from us, fed them, entertained them, etc. while we were at the hopsital with Ian.
• The many rides home from work and to the hospital with my good pal Don Macarthur.
• All the gifts from just about everyone in the world (literally...even people we don't know) that Ian received.
• Bill Intrader and Tim Madsen for the fund raiser camo wristbands to help us pay for gas to the hospital and treat Ian's sisters to some fun activities (like bowling).
• My boss, Mike Fitzgerald and Scott Lynn for giving me the time off from work to take care of our family issues.
• Mat Ellis and his search team for donating a Game Stop gift card which Ian thankfully used to purchase the new Lego Indiana Jones XBox game (soon to purchase the Batman game as well).
• Arthur Esclamada for taking the time to attend the Ian Crabtree Benefit Race and for his entry donation.
• Melanie Burns from payroll for her gift to Ian.
• Tim Madsen for his super bear gift to Ian.
• Brooke Kimball (Corie's sister) for coming out here to help with the kids and fly with them to Nanna and Grandman Sattley's home in Southern Cali.
• Mom and Dad Sattley for flying out here and watching the kids, and for taking them to southern Cali for a week.
• My parents for their financial assistance to help us get a hotel room and pay for activities while in Utah for their 55th anniversary...It was great to be able to be there for the 55th when I thought it wouldn't be possible.
• The gifts from my sibblings and their families.
• Monetary donations from individual friends and families (I'm not going to list you to keep it modest, but you know who you are. Thank you soooo much!)
• Steven Bess and R/C Car Magazine or the Mini Losi (http://www.rc-car.com/) and free subscription to their awesome magazine.
• Team Associated (http://www.rc10.com/) for the 1/18 On-road racer.
• Carlton Eppes and R/C Pro Series (http://www.rcprosites.com/) for organizing 3 events in favor of Ian and other benefit auctions.
• Black Sheep Raceway (http://www.blacksheepraceway.com/ and http://www.utahrc.com) for raising $1000. Thank you Jason Craig for your auction items.
• Steve Hale and Real R/C Raceway (http://www.real-rc.com/) for raising $1400 for Ian.
• Jay Halsey and Jammin' Products (http://www.jamminproducts.com/) for auctioning the first new release of his X2 Truggy raising over $600 for Ian.
• The Radio Control Car Club of Spokane (http://www.rcccs.com/) for their donation of over $1000 raised at an event.
• JCP Auction and Donations for their donation of $1100.
• Mike Garrison from 247 Design Works (http://www.247designworks.net) for making the 'Ian Crabtree Leukemia Benefit' decals used at all the R/C Pro races and for letting Ian drive his car (http://www.real-rc.com/images/IanRace/IMG_4616.jpg)
• Ian's Crabby Girls and the running event they're planning.
• Lauryn's Brownie Troop for bringing us dinners.
• The Valle's who are throwing a benefit concert for Ian.
• Phadra Miller (http://www.harpsoul.com/) for the one month of free piano lessons for Emma and Lauryn and harp lessons for Corie.
• Everyone else who doesn't come to mind because it's 12:29AM and my mind is tired...you all know who you are.

All donations and funds raised have been applied to the 'Ian Crabtree Medical Fund' at Bank of America. We have used the money to pay for hospital bills, medicine, and gas to and from the hospital. We will continue to keep the money in this fund for Ian's use only throughout the next 3 years. Any funds left over will be donated to cancer victims.

May God bless all of you. With all the horrid things going on in this world it's uplifting to see how much love, assistance, time, etc. is given from everyone we know and even those we don't know. We love you all and pray for you and your families.

Entry 48

We continue to be in a semi-quarantined state. We do have to let the girls go to school, but they have to wash their hands the second the come home and we just hope for the best. Ian and I don't go anywhere, no one comes over (unless they are willing to hang out on the deck), and when he has his Dr. appointments, he has to wear a mask.

Last night, we were eating dinner out on the deck. Our little neighbor kids were out in their backyard playing. Ian was super excited to see someone other than our family so he kept yelling "Hi....hi....hi...hi" after about 30 times the little neighbor kids said, "Will you stop saying hi?" Ian stopped for about 5 seconds and then I hear him say, "Hola......hola.....hola...." It was hilarious. He found a way to keep doing what he wanted while honoring their request to not say "Hi". He is too smart for his own good.

We have an appt tomorrow-another bright and early one. Hopefully Ian's counts will be up so he can get his treatment. It is kind of a weird thing to wish for I know, but the sooner he can get through this last month of treatments and the intense chemo stuff, the sooner we can go into maintenance therapy and then things will be pretty simple. I'll let you know what happens....

Entry 47

Today we woke up bright and early for Ian's appointment (we had to be there at 6:45). To many of you, waking up at 5:45 may not seem like a big deal, but Ian and I are NOT morning people. Despite disliking mornings and the fact that he had to be fasting, he woke up and was cooperative while getting ready. He knew where we were going and he didn't cry; he just let me get him dressed and he got in his car seat without fighting me on it. When we arrived, he walked in on his own; I think that is a first, he always has me carry him. Although he wasn't exactly thrilled about having his port accessed, I didn't have to pin him down and he didn't even cry! The nurse couldn't believe it either. So as far as going through the motions of the appointment, it was the best one yet.

Unfortunately, they couldn't give him his chemo because his ANC counts are too low. That means, we are back in quarantine. I can't take him anywhere unless it is an absolute emergency and no one can come over (I just realized how redundant that last sentence was- like you don't know what quarantine means; oh well, moving on). I guess in a way, it's a good thing. I have a lot of projects that I want to finish up and now I have no excuses. Another upside for Ian (me too, although it sounds to nerdy to admit so I'll pawn it off on him) the new Lego Batman game comes out soon so he'll have plenty of time to conquer it since he's already mastered Star Wars and Indiana Jones.

They want us to come back in on Tuesday, so we'll see how things are then.

Entry 46

The girls have started school and Ian had been sad. Thankfully, it's not a repeat of last year. When the bus would come, he would try to run out and get on it and then the screaming, kicking, and spitting would begin as I picked him up and carried him to the house. A few times, he unlocked the door and took off running down the street. I am not going to even tell you how far he got before I caught him, it's far too embarrassing. At the open house where we met the girls teachers, I happened to run into 2 of my neighbors who unbeknowst to me, witnessed this charade every day and asked me if I thought he was going to handle the girls leaving on the bus (not my proudest moment). I can say that although there are tears as they leave, he has not repeated any embarrassing behavior. Ian does continuously ask for friends to come over and he really wants me to buy him a backpack (he thinks that having a backpack is the golden ticket he needs to get on the bus).

Ian had an appointment tomorrow so I will fill you in after we get the results from his tests.

Entry 45

I know that many of you will be checking the site today since Thursdays are our appointment days so I don't want to disappoint all of his loyal friends by not writing anything. Ian didn't have an appointment today. We are on an every other week schedule right now. So, next week, we'll know more what his counts are and when he goes back in the hospital for the start of round 2.

He continues to amaze me with his energy and attitude about everything. I often forget that he is even sick at times. He threw the biggest temper tantrum today so things truly feel back to normal. His lego car broke into a ton of pieces when he threw it (imagine that being so sturdy made of legos and all). Emma tried to help him fix it and he thought she was trying to take it away so he hit her. I immediately confiscated the car and placed it on the highest shelf in my closet. He kind of looked at me like, "Yeah, so what" and shut my closet door so he could try to figure out how to get it down. It took about 30 seconds before I start hearing him crying, yelling, and beginning to melt down. I told him he couldn't have the car back until he apologized to Emma for hitting her. Well, as you can imagine, that went well and he freaked out even more. I completely ignored him (which made him even madder) and began spitting for about 5 minutes straight. There was seriously this big wad of spit on the carpet from him (so gross, yes I cleaned it up). He finally calmed down but it took him 3 hours to apologize. He also drank alot of water after that. I guess he really dehydrated himself between all the crying and spit.

Anyway, this normally would have really ruffled my feathers; but I actually found it entertaining. His strong will is exactly what we need to beat this and I am glad to have him so I'll put up with his fits. They don't last forever right?

Entry 44

Ian had an appointment yesterday. It was a simple one; just a blood draw to make sure all of his levels are good. Everything looks good except for his immunity (ANC) which was still low despite them already having lowered his chemo. They took it down another notch to see if that helps. They want his immunity to be higher before he enters his next phase of treatment (delayed intensification). As the name indicates, it will be more intense than this past month was and it will put him back into quarantine by the time he's done. He'll probably also need another blood transfusion through it.

That's pretty much the news. I am including a poem my sister wrote. I thought it was sweet.

A bundle of dandelions she delightfully gathered, in her chubby little hand.
A three year old's wish; fluffy white potential, whisping away toward the sand.
Her hearts desire whispered here...A doll? A bike? Or a toy?
But muttered sweet, one simple wish
For her cousin little Ian boy.

Entry 43

I hope you haven't given up on me for my lack of posts lately figuring I've given up writing. Just know that it is a very good sign that I have little to report on.

Ian is doing great! You would never know to look at him that he is sick. I am enjoying the calm pace for now. In a few weeks he will have an overnighter in the hospital and then will have to go into quarantine for a while until his counts pick back up. We are trying to enjoy being out while we can.

Ian has pretty much mastered the pool; he gets noticably better every time I take him. His latest trick is throwing diving sticks into the water (3 feet) and jumping off the side till he hits the bottom, grabbing the sticks, and then pushing off the bottom and up to the surface. I need to be there to grab him once he surfaces but he feels pretty cool getting that far on his own. There are also times where he will have me push him to the bottom so he can grab them and then pull him up. I am sure that it looks like I am drowning him as I am shoving him under the water, but rest assured that that is not the case.

This Thursday he has an appointment but it is a pretty simple one. They are just drawing blood and making sure all his levels are in check. It almost takes longer driving there than the actual appointment, but these appointments are definitely my favorite kind!

Entry 42

Many of you are probably wondering, "Hey, where is the write up on the race?" No worries, it is coming. Mike is working on it and putting together some kind of video for it so you know it is going to be a lot more entertaining than me rambling on. So, keep checking; it should be posted soon. I promise it will be worth the wait (no pressure Mike).

With that said, I am skipping the race stuff since I don't want to invade Mike's domain and I will give you the update for today.

Ian is great! He did not pick up Lauryn's strep. She was a really good sport about wearing a mask for the first 24 hours around him and he thought it was cool to see someone else in one for a change.

It was my Grandma's 80th birthday celebration today so we (my family, Aunts, uncle, and cousins) met up at one of her favorite restaurant's, Sweet Tomatoes. Ian was tired, so of course, that means he has more energy and is bouncing off the walls unable to sit even more than normal. He has learned the value of saying "I am going to throw up" as he said that to me about 4 times tonight. The first time I raced him to the bathroom to find that he wasn't sick at all. He simply wanted to play in the bathroom (gross). He ran into the stall and locked me out so I watched him through the crack in the door to see what would happen (don't freak out-this is not a normal habit of mine so all of you who find yourself in a restroom with me, know that I am not going to be looking in). He unwound all the toilet paper and then rewound it. I was pretty much stuck because he had locked me out and the last thing I was going to do was crawl under the door. So I was super classy yelling him with my face jammed into the stall crack telling him to stop playing with the paper and come out. Then he discovered if he dipped the toilet paper in the toilet and flushed it, it would continue to unwind on it's on. I must have heard about 20 flushes before I could coax him into coming out all with other ladies snickering behind their closed stall doors. It's actually pretty funny now to think about.

Entry 40

I am kind of nervous. I just found out Lauryn has strep throat. She has had a fever or 101.5 and that is the magic number that gives Ian a guaranteed hospital stay. I really hope Ian doesn't pick it up. His counts are kind of low right now so his immunity isn't the best. The thing that might be going for him though is he gets an antibiotic every MTW so maybe that will keep it at bay. Pray he doesn't get it!

I forgot to write this in my earlier posts so I'll include it now. It was really cool at Ian's last appointment because we saw a little boy who was probably 8 having a party. He was celebrating because it was his last time at the hospital; he had done his 3 years of treatment and was cured! I loved seeing that. There is a light at the end of this tunnel.

Entry 39

I really don't have a lot to say- which is a good thing. Ian is doing well and continues to get stronger every day.

For those of you who live in KS or UT there is a R/C benefit race for Ian this Saturday. I am guessing that most or none of you have ever been to a race before. If you are looking for something to do on Saturday, this could be it. Just so you know, it's usually pretty dirty and dusty- so don't go wearing your Sunday best-or anthing you care about for that matter. You'll definitely want sunscreen and water and you can take your kids! If they are anything like ours, they'll have a blast watching the cars race and crash around the track.

Here is an idea of what you can expect. www.5spoke.com

The address to the track is:

24204 E State Route 58
Pleasant Hill, MO 64080

I still have to find out the address for the UT track but I'll post it when I find it.

Entry 38

We got the results from Ian's MRI. The blood clot is gone!!! They want to keep him on the blood thinners though for at least 3 more months to make sure that all the asparaginase is out of his system (that's what caused his blood to clot in the first place). I was hoping we could stop giving him the shots, but if it is less chance of him having another stroke, we'll keep it up. I am glad that it is working though.

His ANC (immunity) counts have dropped a lot since his last appointment though so we are going to try to be careful with his exposure until next Thursday in case they continue to drop. If they are lower at his next appointment, they are going to lower his chemo dose.

All in all, things are great! You would never know to look at Ian right now that he has leukemia. He has a ton of energy, he has hair (it's fuzzy, but it's there), his color is good, and he has lost almost all of the weight from the steroid.

I forgot to say this in my last post but I thought it was so sweet. Although Ian's diagnosis has been difficult at times, it has touched us and changed us in so many ways. When my girls were visiting with their friends in Utah, they decided to have a lemonade stand (technically it was fruit punch) and they gave the money they made to Ian for his medicine or whatever he needed. It has really made them think outside of themselves and I am so grateful that they are learning that quality. (By the way they made about $10- that will buy him a tube of numbing cream that he needs for his shots. Good job girls!)

Many of you have asked what you can do to help. Here are some simple ideas.

• Save the toys you receive in happy meals and donate them (unpoened) to a children's hospital. They are always needing toys for their prize boxes and happy meal toys or little toys from the dollar store are a great way to help with that. For those of you who have the privilege to live near us (ha ha) you can give them to me and I'll save you the trip.
• Save any gently used books or toys, preferably without little pieces, to hospitals for them to use in their waiting areas or toy rooms.
• Save your magazines. The waiting rooms are stocked when you have an appt, but for the kids and parents who have to be admitted, there is nothing on the floor for them to do other than watch tv.
• Little hygiene kits with a toothbrush, mini toothpaste, comb, soap, and mini shampoo are great for parents and kids who find themselves unexpectedly having to spend the night. (I could have totally used this when Ian was rushed to the ER and then tranferred to the PICU- I know I had major death breath that next morning until Mike arrived with my things and the last thing I wanted to do was talk to all the doctors and nurses that kept coming in).
• Put your spare change into the Ronald McDonald collection boxes. I met several parents who came to the hospital from really far away-many times, out of state, and they were living at theses houses while their kids were in the hospital in lieu of staying in a hotel.

Thanks to all of you for all your prayers and support!

Entry 37

Ian had a follow-up MRI today. They wanted to see if the blood clot in his brain has gotten smaller. We should hear the results tomorrow. I hope it is small enough so he can go off the blood thinners. It would be nice to have a break from giving him shots. His poor little legs are black and blue from all the shots we have to give him. Plus, because his blood is thin, he bruises and bleeds alot easier. He is getting used to them though. He actually sang through one of his shots the other day and if he thinks I've forgotten to give it to him, he reminds me.

He was so out of it after the MRI. The nurses loaded sheets and blankets into a wagon and then Ian got to go for a ride. It would have been a long hike carrying all his dead weight to the car so I was glad for the wagon. I got him in the car and buckled and he instantly unbuckled his seatbelt and ran out of the car trying to take the blankets and sheets from the wagon. We repeated this little charade for 5 minutes with him crawling over the seats and getting out the doors I was far away from. I child locked the ones that I could, but it was obvious he wasn't going to keep his seatbelt on and he was crying so irrationally and having such a complete meltdown (mainly due to the drugs) that I gave in and we "borrowed" the sheets and blanket (I will return them at his appt tomorrow). He was asleep in about 2 minutes and slept for about 4 hours when we got home. Then he woke up and had to make up for lost time by drawing on the walls, getting into nailpolish and getting it all over hisself, the floor, and his clothes, dumping water all over Emma's dinner plate, and dumping out every box of toys we own. While I was cleaning up one mess, he was making another. Got to love side effect of drugs! Apparently he is feeling better. He wouldn't have had the energy to do any of those things a month ago. Oh well, tomorrow is another day.

Entry 36

We have been on vacation this past week-hence the lack of posts. I have a ton to catch you up on. I don't even know where to start.

We went to Utah for Mike's parents 55th wedding anniversary. Ian got to go golfing with his dad and grandpa, swim, and see fireworks among many other things. The fireworks show was loud for him- I had to cover his ears, but once that was done, he loved it. They started with guys parachuting into the stadium and then there were performances by the Blue Man Group and Miley Cyrus. It was so funny. I asked Ian what his favorite thing about the fireworks was and he said "When they played Indiana Jones music to the fireworks." His lego Star Wars addiction has been replaced by Lego Indiana Jones (I must say, it is a really fun game-yes, I know I have turned into a computer nerd and I am proud of it.

At the golf course Ian played along with his own set of clubs. We were staying with a friend who used to be a golf pro so his son has pretty much golfed since he could walk. He outgrew his last set of clubs and gave them to Ian. Ian was SO excited and proud of his new clubs. You can see him in the pictures golfing with Grandpa.

I put the picture of Ian in here eating pizza because my friend and her husband just bought this great pizza place called Dimitri's and that is where we were when you see him chowing down.

The last day there, we met at a beautiful park in the mountains with all of Mike's family. You can see Ian playing in the water of the stream in one of the pictures. He also sat right down and made friends with another little boy his age that was fishing.

He had a great trip and by the end he was ready to come home and "Go to sleep in my green room."

Entry 35

Ian had his chemo appointment yesterday. It was the first dose of the vincristine that he's had in a month (which is the chemo they give him through his port). He was apprehensive waiting for them to access the port, but once the needle was in, he actually wanted to help. The nurse would let Ian push the tubes onto the needle to help draw out the blood and then she would tell him when to pull it off. He then got to shake it and put the next one on. There are syringes filled with medicine or solutions to clean his tubes and he got to squirt those in as well. The only thing he couldn't do was give himself the vincristine. He loved helping that way.

He is more social now when we go. At first, he would stay in his room the whole time, but now, he prefers to go to the back toy room where most of the kids are. There are a ton of toys to play with, coloring books, playstations, etc. He played with the cars and then made me many gourmet things like plastic toast, plastic cupcakes, and plastic sushi.

We got the all clear that he is well enough to travel. We had planned to take a trip to Utah before Ian was sick and it looks like we can go. The nurses gave us this huge travel kit with all these medicines any ER personel would need in an emergency and a letter explaining his condition and treatment.

Ian started a second oral chemo and is back on the steroid, but thankfully, he only has to take the steroid for 5 days this month. He is still losing the weight from his last round of steroids; he gets a little thinner each day. If you were to see him now, you would probably have no idea he is sick. His color is great and he has tons of energy. His hair is growing back in but it's a little fuzzier than normal. We are going to keep it short because he will probably still lose it.

He seems to be feeling well from his appointment yesterday. He has been teasing me all day and been begging to play with friends. He is taking a long nap as I type this, but that is normal for him.

Thanks again for all of your love and support!

Entry 34

Ian has been so incredibly bored with his sisters being out of town so took him train ride. He asks to ride on a train all the time and we found out about a little place in MO where you can take a train ride for an hour. I have to say, I hate google maps. It has gotten me lost more times than I can even remember. Stick with mapquest. Anyway, that tangent over, we made it there at 7:04 when the train was supposed to leave at 7. By some miracle, we were able to purchase tickets and run onto the train before it took off at 7:05.

Ian was so excited when he sat down! You couldn't get the smile off his face! The train was this little old train from the 1920's that used to take passengers to and from work in New York. There is no air conditioner or heater, so the windows were open as the train creeped along. They tell you the history as they drive along and playing old train music. It goes really slow, I think I could have walked faster than that train in some places. There was even a point where they had to stop and let the train rest for a minute so it wouldn't overheat.

When the ride is done you can see some of the older cars parked along the track. They have an old car that must have been like the dining car. It has tile on the floor, tables, and a bar. We also went inside the caboose. It was interesting to see. It was like a really small apartment with a bathroom, desk, sink, and a bed.

It was so great to have some alone time with him in that way. He was so grateful and kept telling me "Thank you for taking me on the train."

Entry 33

Lauryn and Emma have been at their Nana's house all week. Surprisingly, I have had less time to write and fill you in because I spend a majority of my time entertaining Ian. He has been so bored without his sisters here! Neither of us have really known what to do with ourselves. He keeps telling me to "Go to the airport and pick them up." They'll probably come home and it will only take a few hours before he's saying "Send them back."

Ian's schedule was a little different this week because his Dr. was out of town last Thursday. He had chemo on Monday- which went well. He is getting more and more used to it. I definitely wouldn't say he is begging to go, but he isn't hysterical either. We had a follow visit yesterday for some blood work and a follow up with the neurologist. The neurologist is starting to wean him off the anti-seizure medicine. I haven't heard anything back yet on the blood work, but they are making sure his levels are ok with the blood thinners he is on. I'll keep you posted.

Entry 32

I have a cousin who is a fireman so we went to visit his firestation today. It was spontanious, so I didn't have my camera (which I am sad about) but the kids had fun. They got to climb inside a firetruck and an ambulance and see the fire station. It's kind of like a big house with a living room with a big tv and tons of seating, a kitchen, and a room with about 25 beds. At the end of the tour, they had a call and the ambulance and fire truck had to take off sirens wailing-which of course, was the coolest part. Ian was pretty upset that he didn't get to ride in one though. I guess he forgot all about his ambulance ride a month ago. Hopefully, that's one experience he'll have to feel deprived over because I don't want to have to do it again.

Ian is doing well. He gets more energetic every day and is looking more like himself as he thins out.

Entry 31

Ian's Aunt Brooke is here in town right now. He has been getting spoiled with tons of attention, massages, and pampering. We went to the Deanna Rose Farm again (it is one of our safe spots- it's outdoors and he loves it). Ian went on a pony ride while the girls fed the baby goats (I don't think he liked them jumping up on him last time) and then they went gem mining. It's really cute- they give you a big bag of sand and gravel and then you have this tray you dump the sand bag in and stick it in the water until you start seeing your gems.

It was hilarious because Ian was trying to teach Brooke how to play Lego Star Wars. She didn't know how to do it and apparently was slowing him down. He said, "Log out Brooke" which she didn't know how to do. Without missing a beat or taking his eyes off the tv screen, he reaches over to her controller, fiddles around with a few buttons, and removes her from the game. Evidently, he has no patience for anyone who slows up his progress in star wars.

We are still trying to get Ian's new chemo medicine figured out. He has been taking an oral one in lieu of getting it through his port. The oral chemo makes him alot more nautious. Unfortunately, we've had a few instances at friends houses and at restaurants. We've been given some anti-nausea medicine to counter it so hopefully, it will work for him.

Entry 28

Howdy Ho!

This is Mike talkin' now. It's been over a month since I personally posted to Ian's blog. Before I update you on Ian's status I want to post some cool pics about a super huge tornado watch/thunderstorm that is moving right overhead right now. check out these pics from just west of us.













The news choppers have been flying over head to track this beast. Kansas life is great!