Sunday, January 27, 2008
Walking at 3 Feet Tall
This video may not seem like much to some, but to me, it's an answer to prayer. During induction, Cole basically lost the ability to walk through atrophy and side-effects brought on by the chemo. With our continued stay in the hospital, it was difficult to get him up and exercising, but we did our best. I didn't think we'd make much progress, but Cole amazed my by bouncing back and standing and walking with help much faster than I thought he could.
Yesterday, Cole started walking on his own again, without the need to hold mine or Dalynn's hand. It's been a month and a half since the end of induction and Cole could not walk at that time. Today, he did this at the playground.
We had some braces made for his feet, and they make a huge difference. He's wearing them in this video. What this video is, though, is proof that Cole has regained confidence in his ability to move around. He's been walking very well for a couple weeks now, but he was always too afraid of falling to do it without some kind of support there, be it a table or chair or mom's hand.
All of the sudden, we have an independent toddler back in our house again! I can walk places with my boy again. That's something I would dream about at night in the hospital, just walking somewhere with him again. That prayer was answered yesterday when he and I went to the aquarium together, just the two of us. It was awesome. Then today, this.
For those of you that have been praying, the Lord has heard you. For those of you that may have stumbled here because your own child is going through something hard and debilitating, there's hope. For me, I'm just happy.
Thursday, January 17, 2008
Itsy Bitsy Spider
It's time for a post that's not about cancer.
I took this tonight, while Cole was eating dinner. He was talking about "red spiders" coming to see him. I have no idea where he got it from, but it was cute. He started singing, so I asked him to sing the Itsy Bitsy Spider.
I took this tonight, while Cole was eating dinner. He was talking about "red spiders" coming to see him. I have no idea where he got it from, but it was cute. He started singing, so I asked him to sing the Itsy Bitsy Spider.
Wednesday, January 16, 2008
Another Fund Raiser for Cole
Where: Joe's Crab Shack, 3333 Waterside Dr. Norfolk, Va. (in the Waterside Mall)
When: January 24th, 2008 from 5 - 10 pm
Joe's manager, IV Miller, who's son Charlie is also a cancer kid at CHKD, has kindly organized a fund raiser for Cole. 10% of all the proceeds they take in that day when someone orders with a flyer (which we'll be handing out at the door) will go to Cole's treatment, via the Noblemen.
I have to say, though, that I'm looking forward to it most of all as a chance to see Dalynn pick crab once again. She's a world-class crab picker, and she's amazingly fast at eating crab. You should come on out just for that! I'm sure we can get a crab picking race going or something. My money's on Dalynn!
When: January 24th, 2008 from 5 - 10 pm
Joe's manager, IV Miller, who's son Charlie is also a cancer kid at CHKD, has kindly organized a fund raiser for Cole. 10% of all the proceeds they take in that day when someone orders with a flyer (which we'll be handing out at the door) will go to Cole's treatment, via the Noblemen.
I have to say, though, that I'm looking forward to it most of all as a chance to see Dalynn pick crab once again. She's a world-class crab picker, and she's amazingly fast at eating crab. You should come on out just for that! I'm sure we can get a crab picking race going or something. My money's on Dalynn!
Surgery Update and the Noblemen
Cole's surgery is being postponed. There was a little to much confusion with the surgeons for our comfort, so we've opted to wait for Dr. Mahafee, the surgeon who did Cole's biopsy, to do the cath implant. Dalynn and I are much more comfortable with this decision as the surgery is likely to be "technically challenging" and Dr. Mahafee has the experience of the terrain, if you will.
On another note, I met with the Norfolk chapter of the Noblemen last night. They (the Noblemen) are the charity that is accepting donations in Cole's name for us, thus removing the need for us to set up a not-for-profit for Cole. They are a wonderful group of guys, very dedicated to helping children with needs, whether they be medical or financial. Cole is high on their radar right now, and we will most likely be receiving more help from them in the future. That is a blessing and a gift.
In the meeting I got to hear about some of their "noble deeds" over Christmas. One of these involved 12 guys dressed up like Santa riding around Norfolk dropping off sacks of presents to underprivileged kids all over the city. They took obvious pleasure in spreading some Christmas joy to kids that may not have had anything under the tree come Christmas morning. Kind of made me wish I could have taken part in it!
They are having a fund-raising Mardi Gras party on January 29 at the Granby Theater, on Granby St. in downtown Norfolk. I think it starts at 6. Half the proceeds go to an organization called Hope House which provides assistance to poor families in Norfolk. The other half will go to the Noblemen for future noble deeds. If you're in the area you should check it out, it sounds like it's going to be a good and worthwhile time.
On another note, I met with the Norfolk chapter of the Noblemen last night. They (the Noblemen) are the charity that is accepting donations in Cole's name for us, thus removing the need for us to set up a not-for-profit for Cole. They are a wonderful group of guys, very dedicated to helping children with needs, whether they be medical or financial. Cole is high on their radar right now, and we will most likely be receiving more help from them in the future. That is a blessing and a gift.
In the meeting I got to hear about some of their "noble deeds" over Christmas. One of these involved 12 guys dressed up like Santa riding around Norfolk dropping off sacks of presents to underprivileged kids all over the city. They took obvious pleasure in spreading some Christmas joy to kids that may not have had anything under the tree come Christmas morning. Kind of made me wish I could have taken part in it!
They are having a fund-raising Mardi Gras party on January 29 at the Granby Theater, on Granby St. in downtown Norfolk. I think it starts at 6. Half the proceeds go to an organization called Hope House which provides assistance to poor families in Norfolk. The other half will go to the Noblemen for future noble deeds. If you're in the area you should check it out, it sounds like it's going to be a good and worthwhile time.
Tuesday, January 15, 2008
Surgery
Cole is up for Surgery this Thursday, the 17th of January. He's going to be having his portacath implanted. For those of you that don't know, that's a permanent IV that resides just under the skin in his upper chest.
It will (hopefully) make life easy when it comes to getting a line on Cole and will also make it easy to bathe him. Right now, with his temporary central line, we have to wrap it in saran wrap and tape it to him to give him a bath. That's a little aggravating, and he doesn't like it (of course, he doesn't like baths at all right now).
So, get your pray on. It's not a big surgery, but the doctors say that it is technically difficult because of an existing clot that Cole has. That clot is not a danger to Cole, mind you, it just means they're going to have to put the port in a little differently than they normally would.
EDIT: Because of some confusion with the surgeons we have opted to postpone Cole's surgery. We are opting for Dr. Mahafee to do it, who was is the same doctor who did Cole's biopsy. He "knows" the landscape, if you will, and we feel more comfortable with him doing the surgery than we would with a new surgeon coming in.
It will (hopefully) make life easy when it comes to getting a line on Cole and will also make it easy to bathe him. Right now, with his temporary central line, we have to wrap it in saran wrap and tape it to him to give him a bath. That's a little aggravating, and he doesn't like it (of course, he doesn't like baths at all right now).
So, get your pray on. It's not a big surgery, but the doctors say that it is technically difficult because of an existing clot that Cole has. That clot is not a danger to Cole, mind you, it just means they're going to have to put the port in a little differently than they normally would.
EDIT: Because of some confusion with the surgeons we have opted to postpone Cole's surgery. We are opting for Dr. Mahafee to do it, who was is the same doctor who did Cole's biopsy. He "knows" the landscape, if you will, and we feel more comfortable with him doing the surgery than we would with a new surgeon coming in.
Tuesday, January 8, 2008
Home!
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.
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.
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.