Hah, it would appear that I spoke too soon! Just when it seemed that the hospital visit would be never-ending, it ended!
We came home today, arriving around 4:30 at our house. Cole made a bee line for his train table. From the time we told him we were going home I think he wanted to get to his train table. He loves that thing, and I'm so glad!
Thank you all for the prayers that you all offered up for us. They were truly needed and well answered.
Tuesday, January 8, 2008
Monday, January 7, 2008
The Never Ending Hospital Visit
I think this Thursday it will be 4 weeks in the hospital. It might be 5, I'm not too sure, but it certainly is starting to feel like forever. The worst part is that there is no end in sight. None of the doctors will comment on when they think we can go home. I don't really blame them, but it is frustrating. We really don't even ask that question anymore. It's just kind of expected that we're going to be here for a while.
With that being said, Cole is doing really well. Saturday, Dr. Owen told us to get out of the hospital for a while, so we took off with some friends who were visiting from out of town and went straight to the Zoo in Norfolk! Our primary objective was to get Cole to eat, and eat he did, scarfing down a peanut butter sandwich almost as soon as we got there. It was a bit cold, but not horribly so. We thoroughly enjoyed our trip, and Cole has been talking about the giraffes and elephants since we came back.
After the Zoo, we went home for about an hour and Cole got to play with his train table for the very first time. He kept asking "Is this mine?" He certainly played with it like it was his, and had a blast. It was especially gratifying as he stood the whole time he played. He actually played with the train table til he wasn't able to stand any more, finally having to sit in some one's lap. But, after the Zoo and then over an hour standing at the train table, we thought it was a well-deserved rest.
He's now able to walk for a good distance and is much steadier than he used to be. Here, a good distance means 10 to 20 feet. That tires him out but his stamina is much improved. If you have a toddler who walks all the time consider yourself blessed. I never knew how much I'd miss the simple act of Cole walking beside me. I cherish the thought of him walking with me again. I pray that he's up and running by summer.
Sunday saw us spending several hours in the play-room and the departure of my Mom for a few weeks. Gary, Dalynn's Dad, came up then, too. The outing and the blood both seemed to have worked wonders on Cole's mood as most of Sunday he was an absolute joy to be around. He played hard til 8 pm. Around 8, he asked me to lay down with him and watch TV, which I gladly did. He was asleep by 9:15 pm.
You know, as I write this one thought has occurred to me. Better 4 weeks in the hospital than not having him at all. It's a sobering thought, but true. Just 30 years ago, he wouldn't have survived ALL leukemia, most likely. 60 years ago, he'd have died of "a wasting illness". I think I can spend another few nights in the hospital, happily, given the alternative.
With that being said, Cole is doing really well. Saturday, Dr. Owen told us to get out of the hospital for a while, so we took off with some friends who were visiting from out of town and went straight to the Zoo in Norfolk! Our primary objective was to get Cole to eat, and eat he did, scarfing down a peanut butter sandwich almost as soon as we got there. It was a bit cold, but not horribly so. We thoroughly enjoyed our trip, and Cole has been talking about the giraffes and elephants since we came back.
After the Zoo, we went home for about an hour and Cole got to play with his train table for the very first time. He kept asking "Is this mine?" He certainly played with it like it was his, and had a blast. It was especially gratifying as he stood the whole time he played. He actually played with the train table til he wasn't able to stand any more, finally having to sit in some one's lap. But, after the Zoo and then over an hour standing at the train table, we thought it was a well-deserved rest.
He's now able to walk for a good distance and is much steadier than he used to be. Here, a good distance means 10 to 20 feet. That tires him out but his stamina is much improved. If you have a toddler who walks all the time consider yourself blessed. I never knew how much I'd miss the simple act of Cole walking beside me. I cherish the thought of him walking with me again. I pray that he's up and running by summer.
Sunday saw us spending several hours in the play-room and the departure of my Mom for a few weeks. Gary, Dalynn's Dad, came up then, too. The outing and the blood both seemed to have worked wonders on Cole's mood as most of Sunday he was an absolute joy to be around. He played hard til 8 pm. Around 8, he asked me to lay down with him and watch TV, which I gladly did. He was asleep by 9:15 pm.
You know, as I write this one thought has occurred to me. Better 4 weeks in the hospital than not having him at all. It's a sobering thought, but true. Just 30 years ago, he wouldn't have survived ALL leukemia, most likely. 60 years ago, he'd have died of "a wasting illness". I think I can spend another few nights in the hospital, happily, given the alternative.
Friday, January 4, 2008
Real Life Pace vs. Hospital Pace
Cole's CT bone scan was done yesterday and the results came in today. Thankfully, it was completely normal. The infection has not spread to his leg, which is a blessing and a relief, though an expected one. He also hasn't run a fever since yesterday, but I'm not sure if it's been 24 hours or not.
That doesn't mean we're leaving, of course, as he got a new IV med today, an immune factor called IGG. It will help him fight off the fungal infection and may be something he gets in the future. Dr. Owen says that he wants to keep us in the hospital through the weekend for observation of how Cole does with IGG. So far, so good.
Cole spent most of today sleeping, but that is mainly due to his hemoglobin being 7.1, which is low for a toddler. If an adult had hemoglobin that low he or she would be on the floor. It's amazing how resilient kids are. Cole's going to be getting some blood tonight and that should make him feel better tomorrow. Hopefully, we'll be able to get to the all-important play-room then.
Tonight is my night to stay here with Cole which is completely fine with me. It's kind of nice staying here, now. I realized that this week while I was at work. I was feeling a little anxious about all I had to do (kind of some make-up work for being out for a week and a half, if you will) and I started thinking about how the hustle of normal life is so different from the hospital.
In the hospital there's not a ton you have to do. There might be a few procedures that occur during a day, but generally not to many. You spend a lot of your time waiting for certain events to take place. The attending comes in to talk with you sometime in the morning, as do specialists. Meds arrive at set times and vitals are taken every few hours. Besides that, the time is yours. Granted, you spend a lot of time waiting for results, but that's becoming bearable.
Compare that to the normal speed of real life, where time isn't measured in events, it's measured in productivity. How much did I get done today, or how much will I be able to do? Am I producing enough to keep the folks around me happy? Am I doing enough to continue at the pace that I've set previously? When you're used to the time-management system of the hospital, the real world system can stress you out.
Now, to be fair, I expected it and only stressed about it for a few hours. Once I got my feet back underneath me I was able to maintain pretty well. It wasn't as much of a shock this time as it was the first time, mainly because I was prepared for it. But, the differences were very apparent to me this time.
As to which I prefer, the answer would have to be the one I'm used to. Now that I've spent a few days at work, I kind of hate sitting here in the hospital "doing nothing". There's a part of me that really wishes I could be coding away (I'm a software developer, in case you didn't know), happily oblivious to the passing of time. If I spend a few days here at the hospital, though, I'm sure that I'll prefer the pace of things here. It's all a matter of what you're used to, I guess.
That doesn't mean we're leaving, of course, as he got a new IV med today, an immune factor called IGG. It will help him fight off the fungal infection and may be something he gets in the future. Dr. Owen says that he wants to keep us in the hospital through the weekend for observation of how Cole does with IGG. So far, so good.
Cole spent most of today sleeping, but that is mainly due to his hemoglobin being 7.1, which is low for a toddler. If an adult had hemoglobin that low he or she would be on the floor. It's amazing how resilient kids are. Cole's going to be getting some blood tonight and that should make him feel better tomorrow. Hopefully, we'll be able to get to the all-important play-room then.
Tonight is my night to stay here with Cole which is completely fine with me. It's kind of nice staying here, now. I realized that this week while I was at work. I was feeling a little anxious about all I had to do (kind of some make-up work for being out for a week and a half, if you will) and I started thinking about how the hustle of normal life is so different from the hospital.
In the hospital there's not a ton you have to do. There might be a few procedures that occur during a day, but generally not to many. You spend a lot of your time waiting for certain events to take place. The attending comes in to talk with you sometime in the morning, as do specialists. Meds arrive at set times and vitals are taken every few hours. Besides that, the time is yours. Granted, you spend a lot of time waiting for results, but that's becoming bearable.
Compare that to the normal speed of real life, where time isn't measured in events, it's measured in productivity. How much did I get done today, or how much will I be able to do? Am I producing enough to keep the folks around me happy? Am I doing enough to continue at the pace that I've set previously? When you're used to the time-management system of the hospital, the real world system can stress you out.
Now, to be fair, I expected it and only stressed about it for a few hours. Once I got my feet back underneath me I was able to maintain pretty well. It wasn't as much of a shock this time as it was the first time, mainly because I was prepared for it. But, the differences were very apparent to me this time.
As to which I prefer, the answer would have to be the one I'm used to. Now that I've spent a few days at work, I kind of hate sitting here in the hospital "doing nothing". There's a part of me that really wishes I could be coding away (I'm a software developer, in case you didn't know), happily oblivious to the passing of time. If I spend a few days here at the hospital, though, I'm sure that I'll prefer the pace of things here. It's all a matter of what you're used to, I guess.
Wednesday, January 2, 2008
Quick Update
So, we're still in the hospital and are likely to be for a while. Cole's fevers are back, though still not as severe or frequent as before. The doctors are actually quite glad he's running fevers, as it means that his immune system is fully engaged in fighting off the fungus. While that's great, fevers mean hospitalization while he's having the fevers and with no end in sight that's a bit daunting.
Cole is having a bone scan of his left thigh tomorrow (and maybe more, I'm not sure). They're going to be injecting a dye into him a few hours before, then CT scanning him. He's been complaining of some leg pain and Dr. Owen just wants to make sure that the fungal infection hasn't spread to any other areas. I hesitate to say that it's "just routine", as every time someone has said that recently it's turned out to not be "just routine results", if you catch my meaning.
Cole's spirits are good, though. He's playing all day long most days and he's getting some good exercise in the play-rooms for at least an hour a day. His standing and walking are getting better, and he's much more stable on his feet. It's so good to see him getting his strength back, and so quickly. I honestly didn't think he'd recover anywhere near as quickly as he has been. There's a marked improvement every time we get him on his feet and moving around.
Cole is having a bone scan of his left thigh tomorrow (and maybe more, I'm not sure). They're going to be injecting a dye into him a few hours before, then CT scanning him. He's been complaining of some leg pain and Dr. Owen just wants to make sure that the fungal infection hasn't spread to any other areas. I hesitate to say that it's "just routine", as every time someone has said that recently it's turned out to not be "just routine results", if you catch my meaning.
Cole's spirits are good, though. He's playing all day long most days and he's getting some good exercise in the play-rooms for at least an hour a day. His standing and walking are getting better, and he's much more stable on his feet. It's so good to see him getting his strength back, and so quickly. I honestly didn't think he'd recover anywhere near as quickly as he has been. There's a marked improvement every time we get him on his feet and moving around.
Sunday, December 30, 2007
Time
Well, it's been over 48 hours without a fever, woohoo!
Dalynn and I had the night off (my mom and sister stayed with Cole) and got a chance to go to church this morning. I could tell how much time had passed by how much bigger all the kids at church seemed. It was wonderful to see our church family and we got a chance to talk to them as a body, as well.
Our last service of the year was a continental breakfast style get-together and it was an ideal way to catch up with everyone. I thoroughly enjoyed it, and my heart swelled with gratitude for all of these people who have done so much for us.
We headed back to the hospital around 3.
Time seems to move differently in the hospital. I can't quite figure it out, but I think it has something to do with living one day at a time. You don't really make plans while you're here, you just wake up and all you consider is the day that lays in front of you. You live the day as best you can and when night comes you tend to spend time contemplating what went on in the day that just passed. Then you go to bed, probably earlier than you would at home. The next day will roll around sooner than you probably wish, at least from a sleep perspective.
I can't help but think of the scripture where Christ tells us to consider only today, as today has enough troubles all on its own. It's very true. To some extent, I wish I could have this hospital mentality at home. Maybe I could just place my faith in the Lord and live the day at hand to its fullest. Maybe I could just trust that the Lord will see to the needs of tomorrow and let Him, instead of wasting so much time worrying about it myself (and making futile plans, hehe).
At any rate, I know that I've lived mainly day-to-day over the past month and a half. That makes this time seem so much longer and even fuller than a regular month and a half would normally feel. Not all of it has been pleasant, but I certainly can say that I've lived more in this time than I ever have in any given month and a half in the past.
It's an interestingly satisfying feeling.
Dalynn and I had the night off (my mom and sister stayed with Cole) and got a chance to go to church this morning. I could tell how much time had passed by how much bigger all the kids at church seemed. It was wonderful to see our church family and we got a chance to talk to them as a body, as well.
Our last service of the year was a continental breakfast style get-together and it was an ideal way to catch up with everyone. I thoroughly enjoyed it, and my heart swelled with gratitude for all of these people who have done so much for us.
We headed back to the hospital around 3.
Time seems to move differently in the hospital. I can't quite figure it out, but I think it has something to do with living one day at a time. You don't really make plans while you're here, you just wake up and all you consider is the day that lays in front of you. You live the day as best you can and when night comes you tend to spend time contemplating what went on in the day that just passed. Then you go to bed, probably earlier than you would at home. The next day will roll around sooner than you probably wish, at least from a sleep perspective.
I can't help but think of the scripture where Christ tells us to consider only today, as today has enough troubles all on its own. It's very true. To some extent, I wish I could have this hospital mentality at home. Maybe I could just place my faith in the Lord and live the day at hand to its fullest. Maybe I could just trust that the Lord will see to the needs of tomorrow and let Him, instead of wasting so much time worrying about it myself (and making futile plans, hehe).
At any rate, I know that I've lived mainly day-to-day over the past month and a half. That makes this time seem so much longer and even fuller than a regular month and a half would normally feel. Not all of it has been pleasant, but I certainly can say that I've lived more in this time than I ever have in any given month and a half in the past.
It's an interestingly satisfying feeling.
Friday, December 28, 2007
There's a Fungus Among Us
I do feel the need to apologize for the title, but it was too good to pass up.
Cole does officially have a fungal infection. Further, a CT scan today showed that it was in his brain. Dr. Lowe (one of the oncologists) says that it is only "small spots" in his brain, though, so there is some sort of silver lining. Most likely the spots in his lungs, heart and brain are all fungal.
The infectious disease doctor, Dr. Fisher, thinks it is aspergillus. That's not a good thing, from what I can gather, but it is treatable.
The course of treatment will probably last for a very long time, as in months if not years. It's very hard to treat fungal infections and they have a tendency to come back. Cole will be getting two anti-fungal medications for the time being, but will eventually get moved down to one. We'll likely be in the hospital for a while, as well, as fungal infections are slow to respond (but they are also slow to grow).
Despite all the bad news, it is nice to finally have a diagnosis (of sorts). It was pretty painful when no one knew what it was and folks kept waffling back and forth on what it could be, but no one would give us a definite answer. Now, we have a definite answer and we also have a definite way to move forward. We will continue to move on, and will continue to fight as best we are able. This really changes nothing.
Cole will continue to get his chemo on time. He will also get periodic CT scans to make sure that the infection is being treated. Our number one priority right now is to fight leukemia as it is, by far, the more dangerous of the two diseases.
Now, for some positive news.
Cole was taken off of contact precautions today so we were able to go to the play room! He played for an hour and a half, standing for at least 30 minutes and even trying to walk on his own. At first he was rather shaky on his feet, but as he stood he got steadier. It was good to see him playing and having a good time.
Also, when we got back from the PACU after the CT scan I was eating a piece of cheese. Cole saw it and decided he wanted it, so I gave it to him. He spent the next 5 minutes talking to and about the cheese, but not eating it. I finally asked him, "are you going to talk about it or eat it?" Cole looked at me, and with a very serious expression said, "I gonna talk about it".
All things considered, our spirits are good, and we're settling in to whatever this new diagnosis will bring. I'm not feeling stressed about being in the hospital, and we're back to sharing the load, so I guess that's good.
Cole does officially have a fungal infection. Further, a CT scan today showed that it was in his brain. Dr. Lowe (one of the oncologists) says that it is only "small spots" in his brain, though, so there is some sort of silver lining. Most likely the spots in his lungs, heart and brain are all fungal.
The infectious disease doctor, Dr. Fisher, thinks it is aspergillus. That's not a good thing, from what I can gather, but it is treatable.
The course of treatment will probably last for a very long time, as in months if not years. It's very hard to treat fungal infections and they have a tendency to come back. Cole will be getting two anti-fungal medications for the time being, but will eventually get moved down to one. We'll likely be in the hospital for a while, as well, as fungal infections are slow to respond (but they are also slow to grow).
Despite all the bad news, it is nice to finally have a diagnosis (of sorts). It was pretty painful when no one knew what it was and folks kept waffling back and forth on what it could be, but no one would give us a definite answer. Now, we have a definite answer and we also have a definite way to move forward. We will continue to move on, and will continue to fight as best we are able. This really changes nothing.
Cole will continue to get his chemo on time. He will also get periodic CT scans to make sure that the infection is being treated. Our number one priority right now is to fight leukemia as it is, by far, the more dangerous of the two diseases.
Now, for some positive news.
Cole was taken off of contact precautions today so we were able to go to the play room! He played for an hour and a half, standing for at least 30 minutes and even trying to walk on his own. At first he was rather shaky on his feet, but as he stood he got steadier. It was good to see him playing and having a good time.
Also, when we got back from the PACU after the CT scan I was eating a piece of cheese. Cole saw it and decided he wanted it, so I gave it to him. He spent the next 5 minutes talking to and about the cheese, but not eating it. I finally asked him, "are you going to talk about it or eat it?" Cole looked at me, and with a very serious expression said, "I gonna talk about it".
All things considered, our spirits are good, and we're settling in to whatever this new diagnosis will bring. I'm not feeling stressed about being in the hospital, and we're back to sharing the load, so I guess that's good.
Thursday, December 27, 2007
Fever City
Cole's still running fevers, some of them high. Our infectious disease doctor, Dr. Fisher (he's filling in for Dr. Buescher) took some time to personally look at Cole's slides from his biopsy and got a surprise. He found fungus that had been overlooked previously.
They're going to start Cole back on the anti-fungal medicine, which is something that Dalynn and I had wondered about. When they took him off of the anti-fungal medicine he started running fevers again.
Though this is bad news, it does appear to be an answer to prayer, as well. Most of us have been praying for the doctors to have wisdom, and this sounds like a cut-and-dried case of a doctor having wisdom.
So, continue praying and now pray that the anti-fungals wipe out the fungus wholesale.
They're going to start Cole back on the anti-fungal medicine, which is something that Dalynn and I had wondered about. When they took him off of the anti-fungal medicine he started running fevers again.
Though this is bad news, it does appear to be an answer to prayer, as well. Most of us have been praying for the doctors to have wisdom, and this sounds like a cut-and-dried case of a doctor having wisdom.
So, continue praying and now pray that the anti-fungals wipe out the fungus wholesale.