Logan's Journey

AUGUST 31, 2008 - I, Dave, spent the night again so I'm giving a early morning report. Logan, for the most part, slept through the night. Unfortunately, though, when he wakes up he seems to be in pain. His muscles will tense up and he'll cry and generally the only thing that will temporarily calm him down is his pacifier. Only when they give him medicine will he calm down for a few hours. I personally think that his bones are achey because even when he sleeps his body seems restless. That, and his WBC went up again to 0.3 and when kids engraft they usually say that their bones hurt because their body is working in overdrive to produce those cells.

As for his kidneys, his Crea levels (which is what they were looking at, I think the full name is Creatin) has gone down again to 0.5. A comfortable level is 0.3 to 0.6 and when they raised a flag about it, his levels were 0.8 so it's gone down quite a bit so they're really not worried about that anymore. It's unfortunate that he's in all this pain but it's somewhat of a relief when the reports are reporting what we want them to report.

Be sure to keep Alyssa and Isiah in your thoughts. I guess Alyssa's been having a few rough couple of days and her counts have gone down a bit. Isiah is doing well after his transplant, so let's hope he doesn't get hit out of nowhere like Logan did.

AUGUST 30, 2008 - Today Logan had another bad day. He was so tired that he would lay there crying, with his eyes open, but still be sleeping at the same time. It was actually quite creepy. There wasn't much that they could do for his discomfort either, they were giving him Ativan to keep him calm, and pain medication to keep him comfortable, but none of it seemed to help. He didn't actually sleep most of the day, so he was up that entire time crying. So he was doing that from about 5 in the morning until 6 at night. But right now he's finally sleeping peacefully.

It's looking like the level in his kidneys that they were looking at has gone down a little, which is good. (If you haven't heard about his kidney situation, click here to see our previous updates) In addition, they're cutting off the plastic tubing that goes into his nostrils meaning he may not need the oxygen tube pretty soon and his White Blood Count is up to 0.2 again. We'll update again when we get any more information.

AUGUST 29, 2008 - Logan is still not doing very well right now. His breathing is very labored still, but not quite as bad as it was yesterday. He doesn't have a mask anymore, but he does have a line that runs oxygen into his nostrils. It's at least not nearly as annoying as scary looking as the mask is. They say that hopefully he'll be off of it by Monday. They're also worried about his kidneys, I'm not completely sure why, it has something to do with the medicine they've had to put him on, but I do know that they are worried, and frankly, it scares the hell out of me. I don't know exactly what is going on there, it was very technical and I had just woken up from a nap, so it's all a little fuzzy.

(Dave) From what I gathered, there's a level of something in specific that they're looking at in his kidneys that are higher than usual. And they don't want that level to get any higher, they want to bring it down. So they're working on getting those levels down. Medications in general will take a toll on the body so with what he's gone through the past few days, it seem as if it's taken a bigger toll on his kidneys than predicted. This doesn't mean he has definite kidney damage. They'e dealt with this scenario before so they know how to try to get those number down. They do lab draws every 12 hours, so when we get the news we'll post them. His oxygen situation hasn't changed - he's still getting oxygen, but very little is being provided to him. The doctors are happy with the progress he's made with his oxygen levels. However, they're making sure that as they slowly add liquids to him again that what happened before won't happen again.

AUGUST 29, 2008 - Instead me just jabbering about "web fronts" and stuff like that, I'm actually providing an update on Logan. Because everyone's had it rough these past few days, I opted to take him for the night, fully expecting to pull an all-nighter. I'm glad to say that may not be the case.

Things have actually made a turn for the better. While he is still on oxygen, he is no longer on the oxygen mask. He has the tube that goes across your face, with two tubes going a little bit into the nostrils. It's still giving him what he needs but it's not one giant contraption across his face, and it moves with him as well. So finally, after two days, he no longer needs the oxygen mask. We can thank the respiratory lady who came in and suggested to try that. It's also increased his oxygen saturation. With oxygen saturation, the ideal number is 100. With the mask, he's been at about 92 to 94. When they hooked up the new contraption, his oxygen saturation went to 100 so they actually lowered the amount of oxygen that they're giving to him.

On top of that, the latest chest x-ray shows less signs of fluid in his lungs. So all-in-all it looks like we're getting past this problem. Doctors still think he is engrafting, so that's good. And nurses say that generally kids who run into unexpected road bumps (like this one) while engrafting generally do not make a return visit to the unit.

Staying here the night gave me the opportunity to update the counts when they came out. His counts are still low but all signs still point towards engraftment.

On a final note, Isiah gets his transplant today. I guess he got hit hard from the ATG just like Logan did and had an allergic reaction to it, but his Chemo is officially done. Let's hope he starts to perk up like Logan did and hope that his cells grow quickly.

AUGUST 28, 2008 - Logan has not been doing well at all today. In fact, he is doing worse today than he was yesterday. All of his "levels," whatever those are, have been up and down all day. So the question of the day is whether or not he should go to PICU. For right now they say that he's well enough where he doen't need to go there, but that could change at any minute.

He has to wear a mask all the time so that he's getting his oxygen, but there's only one problem; he ablsolutely hates the mask. So he's constantly pulling it off and we're constantly putting it back on. It's very tiring to do that all day.

The poor litle thing is exhausted right now, but despite that, he won't go to sleep. He just sits on our laps either fussing or crying. The poor thing hasn't slept is almost two days, and he still won't go go to sleep. So, they're going to continue doing tests and hopefully he won't end up in the PICU.

AUGUST 27, 2008 - Apparently Logan didn't do well last night. In addition to the fever he was running he also had problems breathing so right now he is connected to an oxygen tube. For awhile they contemplated putting him into the intensive care unit but have decided against that. They figured the problem was too much fluid retained. He got a blood and platelet transfusion last night and when they (kids) start to engraft, they retain water. They figure that he had too much fluid in his system. So now he is hooked up to a breathing tube and they gave him medication to help him urinate the fluids out and is finally sleeping. On the upside, his WBC hit .2 for the first time. That can go up or down but regardless it's a good sign. More updates will most likely come later today or tonight.

Update: Five pictures have been added, four from today. They won't be the most pleasant pictures of him, obviously. The doctors say he is looking better but he is still on an oxygen tube and still doesn't feel well. No real news yet. But hopefully tomorow morning his WBC will go up. Everyone still says that these symptoms are pointing towards engraftment but they are going to double-check to make sure that there's nothing in his system that shouldn't be.

AUGUST 26, 2008 - Well, today wasn't the best day for Logan. For the most part of the day he was running a low grade fever and cuddled with all of us. As the night progressed his fever spiked to 103 degrees. It got so bad that at one point he was shaking and we had to wrap him up in a blanket to get him warm. My poor liitle baby. They think that the fever might be a sign that he is engrafting. Engraftment is where his body starts making its own cells, and that's what we want. To help they upped the medicine that he gets in the little boost button they push, and they allowed more times an hour for the button to be pushed. We're hoping that his fever goes down and he starts feeling better tomorrow. Please, everybody pray for him, he could really use it right now.

For the record, getting a fever of around 102 to 103 is pretty common when a child is engrafting. I've been forgetting to grab the results, but his WBC is staying at a 0.1 - it hasn't been less than that. While <0.1 is about the same as 0.1, if he is engrafting then hopefully he'll be hitting 0.2 sometime within the next 7 days. However, if the temperature goes up any more then they start to do some tests to make sure it isn't an infection or a bug.

AUGUST 25, 2008 - Logan has been doing really well these last two days. They had to up his pain medicine though because he had a painful night on Saturday night. So, now he is sleeping through the night again, and is really tired during the day. On top of it all though, he is still being a doll. He's had to have a few blood transfusions because his platelets have been low. The doctors say that even though he feels good now there is going to come a time soon where that's not going to be the case, so we're just waiting unhappily for that to happen. Every now and then he'll run a little bit of a fever, but they say that it is normal for that to happen. His mucusitis is getting worse and he coughs a lot to try to get the phlegm up. The other day he even vomited some of it up, I felt so bad for him. But he's still being a good little trooper, taking it all in stride. His hair is fallign out even more, so the mohawk is gone.

Alyssa and Isiah are doing well, and Alyssa's WBC has been climbing - it hit 0.4 today so let's hope it continues to rise. Please keep them, and all the other children and families on 5200 in your prayers, they could all use a little extra prayers.

And finally, we just wanted to thank everyone for what they're doing towards the benefit dinner. We really appreciate all the effort being put into it. That being said, a page specifically for the benefit has been put up with a list of items that have been donated. If you donated an item and have a Web site, please let me know and we'll link your site on the donations list.

AUGUST 21, 2008 - Sorry that I didn't update yesterday, but I had a couple of appointments and that kind of distracted me, and I completely forgot to write a new journal. Since I don't know my way around yet, Dad took me to my appointments while Dave worked and so Grandma watched Logan. I guess he was just a doll for her and they played all day long. He also took a long nap with her. While it was nice, it made last night a long one. He was up and down all night long, keeping me on my toes.

That wasn't the only long night though, the night before that he decided that 4 a.m. was the perfect time to wake up and play with Mommy. So we were up for an hour and a half until he finally fell back asleep. Today he was great again. The only problem is that we've been trying to start using his hearing aids again and he is not liking that. In fact, if you even try to put them in he throws a fit. So that's been a lot of fun. Well, everthing else is pretty much the same around with us, so until tomorrow.

AUGUST 19, 2008 - Well, today was pretty much like the last week, Logan is feeling just fine. On the other hand, there was one huge difference today. Today Logan started losing his hair. So, instead of letting his hair falling out in clumps and watching that, we decided to shave his head.

But, instead of shaving all of his hair off, we gave him a mohawk. While I miss his beautiful head of hair, I do have to admit that he looks adorable with a mohawk. He just needs some black clothing and chains and he'd look like a little punk rocker.

AUGUST 18, 2008 - Sorry that I didn't write this weekend, but it was very uneventful and there wasn't really anything to write about. Logan did really well this weekend. They upped his dose of pain medicine and everything has been going really well. One thing that's different is that he has been sleeping a lot. He sleeps at least nine hours a night and then, on top of that, he'll nap for anywhere between 2-4 hours. This isn't like Logan at all. He usually rarely ever sleeps longer than 6-7 hours a night, and he definitely doesn't take four hour naps.

However, the worst is ahead. For about the next ten days the doctors expect him to be in a lot of pain due to mucusitis again. They also say that he will probably have fevers during these days. Plus, he is due to lose his hair within the next few days. The nurses say that they generally lose it about five days after transplant, so that's around Wednesday. I'm definitely not looking forward to that, but what can we do, there's nothing that can be done to stop it?

There are some people that I need everyone to pray for. One of the little girls on the floor died this week and another was sent home because there was no more that could be done for her. There is no way to know how these families might be feeling, and we must do what little bit we can to help. Also, little Isaiah comes to 5200 tomorrow, so we need to pray for his family, it's hard bringing your child to a hospital wing like this.

Well, I think that that's all the news for now, talk to you all again tomorrow.

AUGUST 15, 2008 - Well, today was the big day, Transplant Day! It went really well, and actually didn't take that long. There were two transplants, the first which lasted about 20 minutes and the second which only lasted about 5 minutes. He did really well with it though, and for the first one he slept through the entire thing. They were moving around about a hundred cords and hooking him up and he just laid there sleeping. The second one he was awake for and he just sat there watching what they were doing and letting them do it.

He is doing really well now. He's really tired, his cheeks are a little swollen, and weirdest of all, he smells like creamed corn (which, according to the nurses is very normal). His blood pressure has been pretty high lately, so they have been giving him medication to bring that down. I think that he is going to be checking out for the night soon, and I think that he'll be sleeping through the entire night.

They gave him what is called a PCA pump, which is a pump that gives him a continuous supply of pain medication, so that it making him feel much better. He was in quite a bit of pain and really needed it. It's really nice because whenever he's in pain they can push a button and give him an extra dose of the medicine. So, all in all it's been a really good day for our little Logan.

AUGUST 14, 2008 - Logan is doing about the same today. His blood pressure has been kind of high, so he's had to take medicine to bring it back down. That's due to the ATG (immunosupressant) that he's on. This is some wicked stuff. The poor little thing is lethargic, won't eat, and still has red marks all over his face. The most part of the day he has been curled in someone's lap, sleeping. Right now, which is around 8 pm, he is starting, of course, to perk up and become a little more active. He's also quite fussy right now.

The ATG also has another bad side effect that seems to be driving him crazy, it makes him itchy. So, the last hour or so he has been constantly itching his little eyes and the whole bottom of him face is red. He has been givin Benedryl and Tylenol to stop the itching, but it hasn't seemed to have helped so they've ordered something else and are going to give that to him once they get it up from the pharmacy.

Tomorrow though, is the big day. He get's his transplant! He'll probably still feel pretty crappy for a little while following the transplant, but at least he won't have to take anymore horrible medication after it. After that all we do is just sit and wait for his white blood count to go up again.

AUGUST 13, 2008 - Logan is doing about the same as yesterday. Last night he got really bad and when we tried to give him some medicine he kept throwing it back up. He became very lethargic and was running a fever. However, he did sleep all through the night, but this morning he was again lethargic for quite a few hours before he perked up.

He still refuses to eat anything, and is currently on Grandpa's lap sleeping. He was so sick today he didn't even want to play or ride in the little car that they have there. We were able to get him baptized today, so that was at least a plus in all of this. Well, he's getting fussy, so I've got to go. Love you everyone.

AUGUST 12, 2008 - Sorry that I forgot to update the site yesterday, it again, was a busy day. Logan is still the same as it has been lately. He's sleeping quite a bit lately, which for him is not normal. He slept a full ten hours last night, which I don't think I've ever seen him do. He isn't eating anything anymore, so they have him on fluids to keep him hydrated. One good thing is we got his daily reports and his white blood count went down from 5 to 1.9, which, obviously, is the point of the chemo. Today he got the worst of his medicine, and weren't looking forward to it. It's supposed to cause fevers and chills.

The medicine doesn't seem to be having too bad of an effect on Logan right now, but around right now (8-9pm) is when its really supposed to hit him. Right now he is completely lethargic, and it's really hard to watch. Usually Logan is really awake and active at this time of night, but we can hardly even keep him awake right now, well, that would be if we wanted to, which we don't. The poor little thing is running a fever of 101.5, and it's supposed to get up to about 104 by the time this is all done. I'll keep everyone updated on any changes.

SUNDAY, AUGUST 10 - Sorry that I haven't updated this in a few days, but we've been very busy taking care of our little man. He starting to really have a rough time. For the last couple of days he would only eat baby food, and before that he wouldn't eat anything at all.

Right now he'll eat a little bit of food, but not much. He has what is called mucusitis, which means that he has sores somewhere from his mouth to his rectum, they just don't know quite where. So right now he acts like he wants to eat, but it's probably too painful, so he doesn't.

He is also sleeping a lot more and you can see in his eyes that he is so tired and doesn't feel well. Yesterday he was really ornery yesterday and it wasn't easy to keep him comforted. He is spending most of today sleeping.

They started him on a new chemotherapy today called Cytoxin. This stuff is worse than the previous Busulfan and will make him feel even worse. He has another medication that he has to take with it called Mesna because this chemo can hurt the lining of his bladder and the Mesna prevents that.

It's pretty horrible when they bring the chemo in because when they come in the room they are wearing a gown and the syringe containing the chemo is wrapped in special paper. It's so bad that when we change him we have to wear gloves because the chemo comes out through his urine. Pretty scary that the stuff they're putting in our son is so toxic we can't even come into contact with it through his urine.

We now have to put cotton balls in his diaper because of the fact that the Cytoxin can ruin his bladder lining, so they check the levels in the cotton balls to make sure that everything is okay with him.

I had the worst experience so far the other day. I was sitting holding Logan and they were giving him his morning dose of Busulfan. When it started going into his body he started crying, and I sat there holding him and wept. It was one of the single worst moments of my life. To know that what they were doing to my son was hurting him but that I had to let him do it or else he'd die.

They had a ceremony on the floor the other day for the opening of the olympics and it was so much fun. They made up a torch and all of the children (and the few adults on the floor) had a turn going down the hall carrying it. Dave carried Logan in one hand and Logan in the other while I trailed behind with his IV pole. Logan loved the fact that when he was coming down the hall everyone clapped and cheered for him. We were so happy that he would finally wear his mask, but that is all thanks to Annie. I had fought with him all morning trying to get him to at least put the mask on (even going as far as wearing one myself to show him how "fun" it was) but as soon as he saw Annie he let us put the mask on without the slightest problem, and now he'll let us put it on him all the time. Sometimes he'll pull on it, but he does it less and less everyday.

He now enjoys riding up and down the hallway in a little car that we push him in. He claps for himself and will wave at us sometimes if we're standing out in the hall watching him, it's adorable. He really loves going out there, so we do it at least a couple of times a day.

Well, that's all that I can think of right now and I promise that I will try to never go this long without an update again because I know that, thankfully, there are a lot of people who visit this site everyday to see how everything is going with him.

Update: Logan threw up while eating his food. He threw all of it up. So he's feeling pretty lousy and has been sleeping all day. We fed him a few bites a few hours later and he kept it down, but we think he's starting to permanently lose his appetite.

The videos are up now with sound, so be sure to check those out.

FRIDAY, AUGUST 8, 2008 - Poor Logan had a rough day today. At first it started out okay. He slept through the night, woke up, had a bottle, went back to sleep for an hour, and then played with Mommy on the floor. He really enjoyed playing on the floor. He has a toy that looks like a gumball machine that you push a lever and little balls come down a ramp and that seems to be his favorite. He is even good at putting the ball back in the top of the toy so that it can go down the little ramp again. So he played with that on the floor for a while.

After that though, everything was kind of downhill. After 7 a.m. we couldn't get him to eat anything. In fact, it's 7 at night and he still hasn't had anything to eat yet. Thankfully they are giving him fluids, so that will keep him hydrated until he feels up to eating again. He's also extremely sleepy and has taken three naps today (we can hardly ever get him to take one) and even when he's awake his eyes look tired. It's really sad to see him like this.

WEDNESDAY, AUGUST 6, 2008 - So, today was the day that I've been dreading since I found out about the treatment, it was his first day of chemo. Thankfully, it wasn't that bad. They started it at 5 this morning, so Logan and I actually slept through part of it. It comes in a big syringe that they hook up to a machine that releases it slowly into his central lines.

Last night was a rough night. Since the chemo is excreted in urine, his diaper has to be changed every two hours, even during the night, or else he'll get a really sore bottom. So, between that, the nurses coming in every couple of hours for vitals, and his normal routine of waking up, the night was extremely long.

So far, Logan seems to be feeling well so hopefully, this will continue.

AUGUST 5, 2008 - So, today was THE day, and I have to say it wasn’t too bad. At the beginning of the day though, before we even went into the hospital I was so scared that I could barely breathe, but as we got into the room and met the different nurses things started to get better. The room is pretty small, but it has enough room for his clothes, toys, a couch/bed, and a chair with a little bit of floor space left over.

When we first got here they had to do some tests on Logan, like an EKG and a chest x-ray, but he did really well with those. Then they had to take some blood which, with his central lines, he didn’t even notice they were doing it, instead he laid in the crib and played with toys.

Everyone is really nice here, and since all the nurses are women, Logan was flirting with them the entire day, being the little Casanova that he is. Right now he is being a doll, he is just sitting up in his crib playing with some toys while I write this and Dave works. He is such a good little boy.

MONDAY, AUGUST 4, 2008 - This was a pretty good weekend for us. Since Logan is going to be in the hospital for his first birthday we decided to go get his one year pictures taken before we went into the hospital. They turned out great and we have some really cute pictures coming in a couple of weeks. Then, after we had his pictures done we decided to go do his shopping for his birthday. We kept two in the packages, but the others we opened early so that he will have them to play with in the hospital.

Other than that this weekend has been pretty good, besides the fact that both Dave and I are starting to get really nervous, especially me. I spent most of the day doing his laundry (his clothes have to be washed twice, then put in a sterile container) and playing with Logan as much as I could. Dave has spent most of the day working on the website. So we've all been busy.

FRIDAY, AUGUST 1, 2008 - Today was a good day for us. Before we got his lines flushed we had the opportunity to look at where we are going to be living. It’s a really nice place. It has two bathrooms, two bedrooms, a dining room, a living room, washer and dryer, and a small kitchen. Altogether, the place is very large, and its going to be hard to come back to Michigan and rent something that’s about half the size.

After that we ran some errands and then he and I took a nap on the couch. Other than that, there’s not much going on around here. Things are starting to get nerve-racking and we are starting to get really nervous. However, we are going tomorrow to get his 1 year pictures taken and doing some early birthday shopping, so that will be a lot of fun and we’re excited about that.