Well, what a wacky and wild week so far. And it's only Monday (it is Monday, right?).
Long story short, Cole started running mild fevers on Thursday night. We took him in Friday, but the fevers cleared up. Per protocol, they drew cultures. Saturday morning at 6:30 AM we got the call that the cultures grew bacteria. And not only did they grow, they grew with zest! Back to the hospital (this time through the ER) where they drew more cultures (the second set) and admitted us up to good ol' 8B.
Keep in mind that Cole has been completely asymptomatic this whole time. He's the picture of 5 year old health. With that mentality, we waltzed up to 8B.
It was a bit like walking into Cheers, and Cole was Norm. Nurses and clins would look at Cole (without recognizing him), look at me, remember me, then realize who this big boy was that was standing next to me must be. Their jaws would drop open, they'd do a double take back to Cole, then yell "COLE!!!!!!!!!!!!!!!"
At one point, I had to leave the room for about 15 minutes. I came back to find Cole, sitting on the bed with two nurses, telling them all about his plans to be a marine biologist and study at UNCW. He's been like a rock star. The floor staff all remember him, and they all love him. It does a daddy's heart good to know there's a special place where his little boy is loved so dearly.
Here's the medical low-down. Cole's line has most likely been "colonized" by a common skin bacteria (Staph epi, for those that keep track of these things). Colonized means that the bacteria has likely been living there for some time, but it's not causing Cole any trouble. It's also likely the cause of the positive culture that grew back in January. It's not really dangerous, but it's still a potential source for infection and the best way to treat it is to take his line out.
Now, quite miraculously in my mind, this line has lasted us for two years of being accessed once to twice a week. That's hard use for a port-a-cath line, and by all rights we should have had an infection well before now. But, the line lasted almost exactly as long as it needed to. I'll let you attribute that to what you will, but I know where I'll attribute that kind of providence.
So, tomorrow, Cole's line will get pulled. He'll have two more days of IV antibiotics (through a regular old IV) and then, sometime Thursday, we get to go home.
And when we go home, Cole will be well and truly finished with his cancer treatment.
Showing posts with label cole. Show all posts
Showing posts with label cole. Show all posts
Monday, February 21, 2011
Wednesday, January 26, 2011
The Last Dying Gasps of Cancer
As many of you may know, my oldest son, Cole, was diagnosed with ALL (Acute Lymphoblastic Leukemia), a type of cancer, on November 14, 2007, just days after his second birthday. It has been a long, trying road to see him through his treatment. Much of the first year or so is covered extensively in this blog, and I invite you to peruse the archives going back to November of 2007. But there is wonderful news to report.
On January 17, 2011, Cole took his last dose of chemo. It was a monumental event, one that we had planned on celebrating with a small party of close friends who have been with us on this journey. But, alas, the party was not meant to be, at least not yet.
Cancer had one last, desperate attempt to rope us back into the land worry and concern that pervades any experience with cancer. One last dying gasp, if you will.
Our family had been sick for about a week, with each of us but Cole having a moderate cold. The two younger kids ran fevers and felt miserable, but as he has been wont to do during his whole treatment, Cole seemed to be riding it out unscathed.
Then, the Saturday before the 17th, just two days before Cole was done with chemo, it happened, he ran a fever. In peds cancer-land, if you have a fever, you earn a trip straight to the hospital. If you're lucky, it's on a weekday, during business hours, so you get to go hang out at clinic. If not (and we never were lucky) you get to go sit in the ER for hours on end.
So, Dalynn and I accessed Cole, he and I packed a bag, and off to the ER we went!
Now, Cole and I are old pros at handling these visits. You get to be that way after 3+ years. So, we came prepared with iPhone and lots of games. We got ushered back to a room quickly, got our stuff down, then turned on the TV and BOOM! Star Wars: A New Hope was on! (Epic, truly epic...)
The doctors and nurses came and went, there were x-rays taken, and then there was some distressing issues with his line. We had to de-access and re-access his port (which he hates) but things got cleared up. Since Cole wasn't running any more fevers, after about 5 hours and 4 new iPhone apps we got to go home.
A call came in the next day, Sunday, in the early afternoon: Cole has a slight touch of pneumonia, take an anti-biotic. No big deal.
Then, a couple hours later, we got the dreaded second call from CHKD: His lab cultures grew something, come back in.
Bah, a second trip to the ER! Now we're just one day from end of chemo.
So, Cole and I grab the bag we had packed and off we go.
This time, I was fairly certain that we'd be admitted and staying for a few days. Much to my surprise, we were let out a mere 4 hours later, no fevers, repeat labs, everything looked fine.
Monday, the 17th, we went to follow up with clinic and also have a GI consult. They had spotted elevated liver enzymes and Cole's liver was enlarged. Thus began our (hopefully) last medical mystery in cancer-land.
There was a lot of worrying and concern, I have to say, and Cole went the following Friday for an ultra-sound and a doppler of his liver, but I'm happy to report that the liver concerns were most likely the result of some virus, and his levels have normalized. I thought especially of our friends the Lemn's who have endured a liver transplant for their young daughter.
These things have a way of making you feel grateful for what you do have, especially when confronted with what you might lose or don't know. While it was a bit of a rude awakening and it really reminded us of darker days, back when Cole was so sick, it's almost refreshing. This is something we won't have to live with much longer.
At the end of February/beginning of March, Cole will be completely done with both chemo and anti-fungals. His port will come out and we'll be ushered from the world of "my son has cancer" to the world of "my son had cancer". What a glorious thing.
On January 17, 2011, Cole took his last dose of chemo. It was a monumental event, one that we had planned on celebrating with a small party of close friends who have been with us on this journey. But, alas, the party was not meant to be, at least not yet.
Cancer had one last, desperate attempt to rope us back into the land worry and concern that pervades any experience with cancer. One last dying gasp, if you will.
Our family had been sick for about a week, with each of us but Cole having a moderate cold. The two younger kids ran fevers and felt miserable, but as he has been wont to do during his whole treatment, Cole seemed to be riding it out unscathed.
Then, the Saturday before the 17th, just two days before Cole was done with chemo, it happened, he ran a fever. In peds cancer-land, if you have a fever, you earn a trip straight to the hospital. If you're lucky, it's on a weekday, during business hours, so you get to go hang out at clinic. If not (and we never were lucky) you get to go sit in the ER for hours on end.
So, Dalynn and I accessed Cole, he and I packed a bag, and off to the ER we went!
Now, Cole and I are old pros at handling these visits. You get to be that way after 3+ years. So, we came prepared with iPhone and lots of games. We got ushered back to a room quickly, got our stuff down, then turned on the TV and BOOM! Star Wars: A New Hope was on! (Epic, truly epic...)
The doctors and nurses came and went, there were x-rays taken, and then there was some distressing issues with his line. We had to de-access and re-access his port (which he hates) but things got cleared up. Since Cole wasn't running any more fevers, after about 5 hours and 4 new iPhone apps we got to go home.
A call came in the next day, Sunday, in the early afternoon: Cole has a slight touch of pneumonia, take an anti-biotic. No big deal.
Then, a couple hours later, we got the dreaded second call from CHKD: His lab cultures grew something, come back in.
Bah, a second trip to the ER! Now we're just one day from end of chemo.
So, Cole and I grab the bag we had packed and off we go.
This time, I was fairly certain that we'd be admitted and staying for a few days. Much to my surprise, we were let out a mere 4 hours later, no fevers, repeat labs, everything looked fine.
Monday, the 17th, we went to follow up with clinic and also have a GI consult. They had spotted elevated liver enzymes and Cole's liver was enlarged. Thus began our (hopefully) last medical mystery in cancer-land.
There was a lot of worrying and concern, I have to say, and Cole went the following Friday for an ultra-sound and a doppler of his liver, but I'm happy to report that the liver concerns were most likely the result of some virus, and his levels have normalized. I thought especially of our friends the Lemn's who have endured a liver transplant for their young daughter.
These things have a way of making you feel grateful for what you do have, especially when confronted with what you might lose or don't know. While it was a bit of a rude awakening and it really reminded us of darker days, back when Cole was so sick, it's almost refreshing. This is something we won't have to live with much longer.
At the end of February/beginning of March, Cole will be completely done with both chemo and anti-fungals. His port will come out and we'll be ushered from the world of "my son has cancer" to the world of "my son had cancer". What a glorious thing.
Wednesday, November 11, 2009
Two Years of Cancer
November 12, 2009 marks the second anniversary of Cole's diagnosis of ALL (leukemia). In light of this Dalynn and I have spent the last several days preparing to post an update for this momentous yet silent event. In that time, we have spent many hours looking through pictures we have taken over the last two years. The effect it has had on me, personally, is profound.
It's amazing what you remember, and how you remember it. I don't remember Cole as looking sick. I remember him much as I see him now, vibrant, alive, talkative and energetic. In my memories, I place the Cole of now back into the settings that we were in back then. Cole chatting away in a hospital bed, hooked up to an IV. Cole, picking at food and talking to me on Christmas day.
The reality, especially of those first few months, is very different and much grimmer. My little boy was so sick. He was swollen to near-unrecognizability from steroids. He was so weak. He talked very little and had to have help to eat. His legs were mere sticks and if he could walk at all it was with a pitiful gait, dragging his legs almost behind him. I cannot believe that I lived through that time and have forgotten so much of the detail.
But, perhaps, it is that same forgetfulness that is a blessing. I remember that things were hard, I remember that it pushed me to my breaking point, but it's a bit like remembering facts. Oh, it has left an indelible mark on my soul, I have been forever changed by this tangle with cancer. But I don't remember these events in crystal clear detail, and thank the Lord for that.
Cole has fought long, and he has fought hard. As I have said, marrying the images of the Cole of then with the Cole of now is almost impossible, and oh, how thankful I am for that. For, you see, Cole is more than winning this fight, he is thriving in the midst of it. He is facing it with an indomitable spirit that does not even recognize that the option of surrender exists. I can see in his actions a heart that will continue to strive for life regardless of what the circumstances say. In looking back at these pictures I am amazed by what an inspiration my little boy is.
I was telling a friend the other day that I am hopeful that Cole will remember his fight. I hope that he always carries with him the realization that if he can overcome this heinous demon he can overcome anything. So much better for him to draw strength from this later in life than for him to forget.
Yet, at the same time, I can also say I hope he does forget. I hope he forgets the pain, the suffering, the terrible days of misery. I hope that he can continue to live life as a normal little boy, vibrant and fully certain of the safety and continuance of life. It would be terrible for cancer to have taken away his sense of security in his childhood. So many children lose that so young, how much better if my boy is not one of them.
For all of my hopes and aspirations, though, I must leave them, and indeed Cole, in the hands of the Lord. God will shape Cole and mold him as he grows older, into a "big boy", into an adolescent and finally into a man. I can only pray that the Lord will allow me to instill in him the values and character that will see him in good steading later in life. As a fallible man, one who is so utterly human and ultimately inconsistent I know that it will be the Lord that shapes and molds Cole, not I. Let Him make of him what He will.
Please join us on this wonderful day in saying a prayer of thanksgiving for the gift of Cole's life that the Lord has given to us. I cannot remember what life felt like before him and I hope that I never have to experience life without him. He is truly a blessed boy and I am a blessed father.
Join with us in thanking the Lord for all the good that has come out of cancer. We are a stronger, tighter family than ever before. We are each individually stronger. We have a reference on what tough times truly are and the certainty that we will make it through the tough times ahead. Most of all, pray with us that the Lord will use this to His glory, to carve a path straight to Him. What better way could Cole's illness serve the world?
Wednesday, September 2, 2009
Movies Movies!
Here are some videos of the boys from our trip. Both videos are from the hotel room.
First off, here is Logan singing a Jesus song. Whenever I pull out my guitar and ask him what he wants to hear, he yells "Jesus". I don't really know what song he means, so I generally play one of my Dad's, which seems to satisfy him.
Next, we have Cole performing a series of "gig moves". Gig moves were coined by Cole and Doug White together one evening. Cole was showing off his dance moves to Doug, and Doug responded by showing off his own dance moves. Somewhere in all of that, "gig move" was born.
Cole's signature gig move is one hand on the ground, one hand in the air above his back. Here, you see a "new" gig move. Cole seems quite satisfied with himself, I have to say, and well he should!
First off, here is Logan singing a Jesus song. Whenever I pull out my guitar and ask him what he wants to hear, he yells "Jesus". I don't really know what song he means, so I generally play one of my Dad's, which seems to satisfy him.
Next, we have Cole performing a series of "gig moves". Gig moves were coined by Cole and Doug White together one evening. Cole was showing off his dance moves to Doug, and Doug responded by showing off his own dance moves. Somewhere in all of that, "gig move" was born.
Cole's signature gig move is one hand on the ground, one hand in the air above his back. Here, you see a "new" gig move. Cole seems quite satisfied with himself, I have to say, and well he should!
Thursday, May 28, 2009
A Plea for Help
First, a quick update. Cole is doing well. He feels great and we have had no low blood sugars. Cole is now back on 6MP and another of his chemos, methotrexate. The plan is that he will receive his usual dose of steroids and vincristine this coming Tuesday. So, things are getting back on track.
The big news, the normalcy changing news, is that the decision has been made on how to treat Cole's fungal infection going forward. He will be getting an older anti-fungal called Ambisome (brand)/amphotericin (generic) which is very effective in treating aspergillosis (the fungal infection which Cole is believed to have). The side effects are mainly infusion toxicity (which he can be pre-medicated against) and renal damage/failure (which can be monitored). As Dr. Owen said, it is not a matter of "if" he has some kidney damage, it is a matter of "when" and to what degree. They will be monitoring him very closely.
What makes it normalcy changing is that amphotericin can only be given by IV infusion and it must be given at the hospital in order to monitor for the two major side effects. This will necessitate Cole being at the hospital twice a week for the foreseeable future (Tuesdays and Fridays). It also means that he will be accessed (via his port) from Tuesday to Friday. Given the stricture that we are not allowed to bring our children to clinic with us, we will now need child care for Logan and Ava on most Tuesdays and Fridays.
We are asking our church family and immediate friends for help with this. If we can find 6 to 8 volunteers then we can arrange it so that no one person will watch Logan and Ava more than once a month. This is obviously a lot to ask, and we do not ask it lightly, but we really have very little choice. So far, we have had 3 awesome folks offer to help us out, so if we can get 3 more, we will hit what we consider our minimum.
If you would like to help, please contact me via email or this blog.
The big news, the normalcy changing news, is that the decision has been made on how to treat Cole's fungal infection going forward. He will be getting an older anti-fungal called Ambisome (brand)/amphotericin (generic) which is very effective in treating aspergillosis (the fungal infection which Cole is believed to have). The side effects are mainly infusion toxicity (which he can be pre-medicated against) and renal damage/failure (which can be monitored). As Dr. Owen said, it is not a matter of "if" he has some kidney damage, it is a matter of "when" and to what degree. They will be monitoring him very closely.
What makes it normalcy changing is that amphotericin can only be given by IV infusion and it must be given at the hospital in order to monitor for the two major side effects. This will necessitate Cole being at the hospital twice a week for the foreseeable future (Tuesdays and Fridays). It also means that he will be accessed (via his port) from Tuesday to Friday. Given the stricture that we are not allowed to bring our children to clinic with us, we will now need child care for Logan and Ava on most Tuesdays and Fridays.
We are asking our church family and immediate friends for help with this. If we can find 6 to 8 volunteers then we can arrange it so that no one person will watch Logan and Ava more than once a month. This is obviously a lot to ask, and we do not ask it lightly, but we really have very little choice. So far, we have had 3 awesome folks offer to help us out, so if we can get 3 more, we will hit what we consider our minimum.
If you would like to help, please contact me via email or this blog.
Wednesday, May 20, 2009
Faith Stretched Thin
My faith is stretched thin. There is very little of it left, to be frankly honest. God often seems far away, if he seems there at all. I constantly feel futility when I pray and therefor do very little of it. Having a live, vibrant faith right now is daunting and nigh on impossible.
It would be so easy, right here, right now, to throw away the faith that I have been given as a gift since it seems of such little use. After all, does something that seems of no immediate value have worth? Quite honestly, I almost did decide to throw away my faith, so frustrated was I.
I did not and will not, however. I have decided to hang on to my belief and pray that the Lord strengthens it. "Lord, I believe, but help my unbelief!" Up til this point, I had never realized that faith, and being a follower of Christ, is as much, if not more so, a decision as it is anything else. When we are hard pressed, when we are beaten down, when God seems so far away, then is the time to decide to continue to follow him. It is such a blessing that even though he seems far away to us, we have an innate immediacy to him. He may seem far from us, but we are never far from him.
Here's an update.
We were discharged a week ago and sent home on no chemo and no anti-fungals. Cole has felt awesome for the last few days and is now behaving as any normal and extremely talkative 3 year old. Gone are his constant belly pains and we have had no repeat low blood sugars.
The doctors are pretty certain that the low blood sugars were a result of the 6MP (mercaptapurine). Last Friday, we started back on them, but at a half dose. As well, we altered the time he is getting them. Previously, Cole would get his 6MP just before bed, and would not eat again til he woke up. Now, he can have a snack right after he wakes up from his nap (normally around 3) and will then get his 6MP at 5. We then eat dinner at 6 (there are food restrictions in giving 6MP).
We check his blood sugar in the morning when he wakes up and every night at 3AM. So far his blood sugars have been no lower than 71, which is awesome.
The really big thing on the horizon right now is how to continue to treat Cole's fungal infection. Our infectious disease doctor has bluntly stated that we need to have an outside consult, if not several. Cole's case is "complex and difficult" (I cannot tell you how sick I am of hearing that) and our doctor would feel more comfortable if there were more than one doctor in on his treatment. Currently, none of the treatments for his fungal infection are very palatable and we're going to be seeking that second opinion.
Please pray for wisdom for all of Cole's doctors and that we find a good alternative to treat Cole's fungal infection.
It would be so easy, right here, right now, to throw away the faith that I have been given as a gift since it seems of such little use. After all, does something that seems of no immediate value have worth? Quite honestly, I almost did decide to throw away my faith, so frustrated was I.
I did not and will not, however. I have decided to hang on to my belief and pray that the Lord strengthens it. "Lord, I believe, but help my unbelief!" Up til this point, I had never realized that faith, and being a follower of Christ, is as much, if not more so, a decision as it is anything else. When we are hard pressed, when we are beaten down, when God seems so far away, then is the time to decide to continue to follow him. It is such a blessing that even though he seems far away to us, we have an innate immediacy to him. He may seem far from us, but we are never far from him.
Here's an update.
We were discharged a week ago and sent home on no chemo and no anti-fungals. Cole has felt awesome for the last few days and is now behaving as any normal and extremely talkative 3 year old. Gone are his constant belly pains and we have had no repeat low blood sugars.
The doctors are pretty certain that the low blood sugars were a result of the 6MP (mercaptapurine). Last Friday, we started back on them, but at a half dose. As well, we altered the time he is getting them. Previously, Cole would get his 6MP just before bed, and would not eat again til he woke up. Now, he can have a snack right after he wakes up from his nap (normally around 3) and will then get his 6MP at 5. We then eat dinner at 6 (there are food restrictions in giving 6MP).
We check his blood sugar in the morning when he wakes up and every night at 3AM. So far his blood sugars have been no lower than 71, which is awesome.
The really big thing on the horizon right now is how to continue to treat Cole's fungal infection. Our infectious disease doctor has bluntly stated that we need to have an outside consult, if not several. Cole's case is "complex and difficult" (I cannot tell you how sick I am of hearing that) and our doctor would feel more comfortable if there were more than one doctor in on his treatment. Currently, none of the treatments for his fungal infection are very palatable and we're going to be seeking that second opinion.
Please pray for wisdom for all of Cole's doctors and that we find a good alternative to treat Cole's fungal infection.
Monday, March 9, 2009
Ava Lynn Rollins
Ava Lynn Rollins was born on February 28, 2009 at 2:10 AM. Dalynn's water broke around 9 PM. Christi Jones, our doula, met us at our house and we all drove to the hospital. We arrived at the hospital around 10 PM.Dalynn was amazing during this labor, even though she said it was her hardest by far. Ava was posterior which made the labor all the more difficult. Thankfully, though, Dalynn didn't have any back labor like she did with Cole (who was also posterior).
This being my 3rd child, I felt much more confident in my ability to help Dalynn labor, and Christi and I made a wonderful team, even receiving a compliment from our midwife, Nel. Christi and I were able to coach Dalynn to a delivery in which she did not tear at all.
Now, lest you think I'm taking any credit here, when I say "coached" we told Dalynn what to do, but Dalynn was the one that actually did it, and she did it with such control it was truly amazing. At the end, when she was pushing and Nel would tell her to stop, Dalynn would immediately stop pushing, no matter where she was in her contraction. It's this control that I believe allowed Dalynn to deliver her second child without a tear.
One of the amazing things about this delivery (besides the sheer amazement inherent in birth itself) is that Dalynn progressed from 5 CM to 10 CM in 20 minutes. After 4 hours of hard labor, Dalynn was only 5 CM dilated and was despairing. She told Christi and I that she didn't think she could do it, as she assumed that the labor would be hours more.
Lo and behold, Dalynn had what amounted to a 20 minute contraction that resulted in Dalynn almost fully dilating and Ava crowning. Ava was born shortly thereafter. I guess the Lord does know what we can and can't endure, huh?
In case you haven't picked up on it, I am truly amazed at my wife and am in a little bit of awe of her. She was truly amazing and I felt blessed to be a part of this birth.
So, what's it like being a girl's Dad? She's certainly prettier than my sons, that's for sure! She looks like a feminine version of Cole when Cole was born. I do feel more protective of her than I do my boys, too, though not by much. However, if you stop to put it in perspective, I feel a little more protective of her as she is now, when I've only known her for a few days, whereas I've known one of my boys for over 3 years. I think that says something... It's more important to me that people find her beautiful than it was for either of my boys, too. It's probably a lot of cultural baggage, but it's what I have to work with and I don't regret having it in the first place.
The boys have reacted very differently to her. Cole thinks she is amazing. Last night he sat on the couch, holding her, giving her lots of kisses and telling us how much he loves her. He talks a lot about how he likes being an older brother, too, all of the sudden. Since Ava has arrived, he's begun to act more favorably to Logan, too, and has even become a little more protective of him. It's quite wonderful to watch.
Logan, on the other hand, would probably prefer that we send Ava back to the hospital! He started throwing these massive temper tantrums when she came home. He's never thrown big temper tantrums before. Now, he'll throw himself on the ground wailing or stomp his feet and scream. It's actually quite funny once you get over your horror.
If I'm holding Ava, Logan will give me about 10 minutes and then he starts demanding that I hold him. He's also become much more of a daddy's boy. He's always been pretty partial to me, but now it's soaring to new heights. I find the extra attention from him to be a bit overwhelming!
He's also refusing to go to Dalynn on occasion. When Dalynn and I first got home, he wouldn't go to her at all. Now, he'll get her to hold him for a minute or two, then he wants me to hold him. Bless his heart, but he's having a hard time of it.
We've had almost 3 weeks of family help, and it's been wonderful. However, next week marks the start of when we'll have all 3 all to ourselves. When I'm home, it's not that hard, but I can only imagine how hard it's going to be for Dalynn for a while as she gets used to managing 3, with one nursing. I don't know why, but 3 seems like such a larger number than 2!
I'm sure it's all a matter of perspective.
Friday, February 6, 2009
Success!
I am pleased to report that Dr. Mahafee successfully implanted a Portacath in Cole today. The surgery was not all smooth sailing but the end result was success, and that is all we can ask. Cole came through it like a champ and we couldn't be prouder of him.
One little note: When I was getting Cole ready to sit down with me while we were in the PACU, as I was bundling Cole into my arms, Cole said, "I'm tired of fighting this freaking battle!" While I don't necessarily want my 3 year old using "freaking", I can totally agree with the sentiment!
One little note: When I was getting Cole ready to sit down with me while we were in the PACU, as I was bundling Cole into my arms, Cole said, "I'm tired of fighting this freaking battle!" While I don't necessarily want my 3 year old using "freaking", I can totally agree with the sentiment!
Thursday, February 5, 2009
Cole's Current Treatment
Here's a note from Dalynn regarding what we're doing in Cole's treatment right now.
Hi everyone! I hope you are all doing well! I know times are tough for so many of you right now, so I appreciate you still taking the time to read this.
Since my last email we have seen GI, surgeon, sleep specialist and our oncology doctors. Our oncologist did agree to a one time try of a steroid taper. Thank you for your prayers regarding this. We did a three day taper and Cole did not have any episodes of waking up gray, zoned and nauseated and vomiting. We monitored his blood sugars and they stayed between 60 to 80. Thank goodness. Now here comes the hard decision, to continue doing the steroid taper or not. According to the oncologist it is not an easy decision. They explained it to us this way. . .to give Cole extra steroids one time during his 3 1/2 year treatment is not a big deal, however to add more steroids every 4 weeks for the next 2 years is a much bigger decision. This is because long term usage of steroids can have side effects.
Which leads me to our next appointment, which was with the GI doctor, Dr. Kobak. Cole has been having tons of abdominal pain and many poop issues. Dr. Kobak thought one of Cole's main issues is reflux and therefore switched his Zantac to Prevacid. He basically said two of Cole's medicines were probably the main cause of this. Steroids are known to cause gastritis, as well as, methotrexate. Dr. Kobak was involved in a case of a little boy who got a methotrexate tablet lodged in his throat and it caused an ulcer. Cole takes 5 tablets of methotrexate every Tuesday night. So needless to say, we need to stay on top of keeping his stomach and intestinal lining coated. Since starting the Prevacid Cole has not been complaining as much of belly pain. Also he told us to stop Lactulose, a laxative, because it is causes gas pain, bloating and cramping. We are to give Cole a more consistant dose of Miralax and our goal is to have "Dairy Queen Soft Serve Poop" once a day. We also had an abdominal ultrasound, which showed Cole was full of poop, so we had to do a "Bowel Cleansing". We were successful and Cole definitely seems to feel better. The ultrasound also revealed Cole has osteopenia, which is bone density loss. This is due to the long term usage of steroids. (Which is why we and the doctors need wisdom regarding the steroid taper because this is just one of the side effects that can come from steroids) We started him on Viactiv twice a day to help with this.
We also met with Dr. Mahaffey, the surgeon, to discuss the possibility of reattempting to insert a permant line, a Port-a-cath, in Cole. The first line was unsucessful due to a blood clot in Cole's heart. After discussing our options with the doctor, we decieded to go for the Port-a-Cath again. It has been almost one year since we tried last time and the blood clot should be reabsorbing and not getting worse. We are scheduled for the procedure this Friday, Feb. 6th. There is no good way to look at the blood clot prior to surgery and we are doing this to prevent Cole from getting stuck 3-4 times every time we go to clinic. Our prayer is the blood clot will be gone and there will be no issue with inserting the port-a-cath!!! PLEASE PRAY!!!
Last, we saw a sleep specialist, Dr. Dubik, yesterday since Cole is not sleeping well. He spent over an hour with us just discussing Cole's case. The doctor is going to try and let all of us rest first for a couple of weeks and then try to tackle the behavior issues. We have started Cole on Ambien, not for long term, but just to get him some rest for a few weeks. We tried it for the first time last night and everyone slept till 5:30 AM. It was Amazing! We are emailing the doctor everyday with updates on how it is going and making adjustments on the time and dosage of the medicine. Please pray for us about this. Because in 4 weeks we will have a new baby, a 17 month old and a child with cancer trying to tackle sleep behavoior issues. Needless to say we need your prayers!!!!!!!!!!
Okay, so to recap on Prayer Request:
1. To do a steroid taper or not
2. Daily Dairy Queen Soft Serve Poop (did you ever think someone would ask you to pray that):)
3. Healing of osteopenia-bone density loss
4. Prevacid controls the reflux
5. Sleep and tackling sleep issues
6. This Friday, port-a-cath sx goes Awesome and there is no more blood clot!!
Thanks for all your continued prayer and support. We don't know how we would endure without you!!
dalynn
Hi everyone! I hope you are all doing well! I know times are tough for so many of you right now, so I appreciate you still taking the time to read this.
Since my last email we have seen GI, surgeon, sleep specialist and our oncology doctors. Our oncologist did agree to a one time try of a steroid taper. Thank you for your prayers regarding this. We did a three day taper and Cole did not have any episodes of waking up gray, zoned and nauseated and vomiting. We monitored his blood sugars and they stayed between 60 to 80. Thank goodness. Now here comes the hard decision, to continue doing the steroid taper or not. According to the oncologist it is not an easy decision. They explained it to us this way. . .to give Cole extra steroids one time during his 3 1/2 year treatment is not a big deal, however to add more steroids every 4 weeks for the next 2 years is a much bigger decision. This is because long term usage of steroids can have side effects.
Which leads me to our next appointment, which was with the GI doctor, Dr. Kobak. Cole has been having tons of abdominal pain and many poop issues. Dr. Kobak thought one of Cole's main issues is reflux and therefore switched his Zantac to Prevacid. He basically said two of Cole's medicines were probably the main cause of this. Steroids are known to cause gastritis, as well as, methotrexate. Dr. Kobak was involved in a case of a little boy who got a methotrexate tablet lodged in his throat and it caused an ulcer. Cole takes 5 tablets of methotrexate every Tuesday night. So needless to say, we need to stay on top of keeping his stomach and intestinal lining coated. Since starting the Prevacid Cole has not been complaining as much of belly pain. Also he told us to stop Lactulose, a laxative, because it is causes gas pain, bloating and cramping. We are to give Cole a more consistant dose of Miralax and our goal is to have "Dairy Queen Soft Serve Poop" once a day. We also had an abdominal ultrasound, which showed Cole was full of poop, so we had to do a "Bowel Cleansing". We were successful and Cole definitely seems to feel better. The ultrasound also revealed Cole has osteopenia, which is bone density loss. This is due to the long term usage of steroids. (Which is why we and the doctors need wisdom regarding the steroid taper because this is just one of the side effects that can come from steroids) We started him on Viactiv twice a day to help with this.
We also met with Dr. Mahaffey, the surgeon, to discuss the possibility of reattempting to insert a permant line, a Port-a-cath, in Cole. The first line was unsucessful due to a blood clot in Cole's heart. After discussing our options with the doctor, we decieded to go for the Port-a-Cath again. It has been almost one year since we tried last time and the blood clot should be reabsorbing and not getting worse. We are scheduled for the procedure this Friday, Feb. 6th. There is no good way to look at the blood clot prior to surgery and we are doing this to prevent Cole from getting stuck 3-4 times every time we go to clinic. Our prayer is the blood clot will be gone and there will be no issue with inserting the port-a-cath!!! PLEASE PRAY!!!
Last, we saw a sleep specialist, Dr. Dubik, yesterday since Cole is not sleeping well. He spent over an hour with us just discussing Cole's case. The doctor is going to try and let all of us rest first for a couple of weeks and then try to tackle the behavior issues. We have started Cole on Ambien, not for long term, but just to get him some rest for a few weeks. We tried it for the first time last night and everyone slept till 5:30 AM. It was Amazing! We are emailing the doctor everyday with updates on how it is going and making adjustments on the time and dosage of the medicine. Please pray for us about this. Because in 4 weeks we will have a new baby, a 17 month old and a child with cancer trying to tackle sleep behavoior issues. Needless to say we need your prayers!!!!!!!!!!
Okay, so to recap on Prayer Request:
1. To do a steroid taper or not
2. Daily Dairy Queen Soft Serve Poop (did you ever think someone would ask you to pray that):)
3. Healing of osteopenia-bone density loss
4. Prevacid controls the reflux
5. Sleep and tackling sleep issues
6. This Friday, port-a-cath sx goes Awesome and there is no more blood clot!!
Thanks for all your continued prayer and support. We don't know how we would endure without you!!
dalynn
Wednesday, January 7, 2009
Happy New Year (and Some Frustrations)
I hope that everyone had a happy New Year. It was uneventful at our house, which is all we asked for.
A lot of times, I turn to my blog out of frustration and this time is no different. It's a bit like venting, but you all get to read it instead of hear it. Here's what's bothering me this time: Cole still isn't sleeping well!
Neither Dalynn nor I have had a full nights sleep in so long I can't remember the last time I had one. The thing that's killing me is that it seems to be getting worse, not better. For instance, when we started maintenance Cole would have sleep issues for the week of steroids, then they'd calm down and he'd sleep fairly well again. Then, the sleep issues extended to the week after steroids, as well (and we're still having issues there). Now, though, for the last two months, his sleep issues have lasted almost the entire cycle! He's just barely getting into a "normal" sleep pattern again when the next round of steroids hits.
I just don't know how we're going to do it with a new baby on the way. As things stand right now, Dalynn and I alternate nights, so one of us gets some uninterrupted sleep. However, when the baby comes, it's not going to be fair to ask Dalynn to take any nights when she's going to be up with the baby, too. That leaves me to deal with Cole's sleep problems all by myself, night after night. I'd say that the only hope we have is that Ava will sleep through the night as quickly as Logan did.
Things are further frustrated by how conservative Cole's doctors are. Cole is having some real issues with coming off of steroids cold-turkey. The doctors at CHKD don't like to taper, though, so we've thought up to this point that it wasn't an option. However, on obtaining a non-official second (and third) opinion we've found out that other pediatric oncology docs don't have a problem with tapering kids off of steroids. We're going to ask them to taper Cole, and if they won't, we're probably going to go with an outside channel to taper him (using inhalers with steroids).
I'll be honest, I don't want to go outside of Cole's oncologists, but we feel that we're at a sufficient crises point that we have no other option.
Further, they won't prescribe him any kind of serious sleep aid. Now, I don't want to have to put my son on some kind of sleep medicine this young in life, but I don't know that we have much choice. We've pushed and pushed, and they finally agreed to ativan (sp) but it's only effective for 6 hours, which isn't really long enough. We haven't tried it to its fullest yet, but I don't expect huge results from it.
The depressing thing is that I was under the assumption that things would get easier the further into maintenance we got, but just the opposite has happened. It's hard to not get down in the dumps when everything looks bleak.
If I could offer up a few prayer requests, here's what they are:
A lot of times, I turn to my blog out of frustration and this time is no different. It's a bit like venting, but you all get to read it instead of hear it. Here's what's bothering me this time: Cole still isn't sleeping well!
Neither Dalynn nor I have had a full nights sleep in so long I can't remember the last time I had one. The thing that's killing me is that it seems to be getting worse, not better. For instance, when we started maintenance Cole would have sleep issues for the week of steroids, then they'd calm down and he'd sleep fairly well again. Then, the sleep issues extended to the week after steroids, as well (and we're still having issues there). Now, though, for the last two months, his sleep issues have lasted almost the entire cycle! He's just barely getting into a "normal" sleep pattern again when the next round of steroids hits.
I just don't know how we're going to do it with a new baby on the way. As things stand right now, Dalynn and I alternate nights, so one of us gets some uninterrupted sleep. However, when the baby comes, it's not going to be fair to ask Dalynn to take any nights when she's going to be up with the baby, too. That leaves me to deal with Cole's sleep problems all by myself, night after night. I'd say that the only hope we have is that Ava will sleep through the night as quickly as Logan did.
Things are further frustrated by how conservative Cole's doctors are. Cole is having some real issues with coming off of steroids cold-turkey. The doctors at CHKD don't like to taper, though, so we've thought up to this point that it wasn't an option. However, on obtaining a non-official second (and third) opinion we've found out that other pediatric oncology docs don't have a problem with tapering kids off of steroids. We're going to ask them to taper Cole, and if they won't, we're probably going to go with an outside channel to taper him (using inhalers with steroids).
I'll be honest, I don't want to go outside of Cole's oncologists, but we feel that we're at a sufficient crises point that we have no other option.
Further, they won't prescribe him any kind of serious sleep aid. Now, I don't want to have to put my son on some kind of sleep medicine this young in life, but I don't know that we have much choice. We've pushed and pushed, and they finally agreed to ativan (sp) but it's only effective for 6 hours, which isn't really long enough. We haven't tried it to its fullest yet, but I don't expect huge results from it.
The depressing thing is that I was under the assumption that things would get easier the further into maintenance we got, but just the opposite has happened. It's hard to not get down in the dumps when everything looks bleak.
If I could offer up a few prayer requests, here's what they are:
- That Cole would sleep better.
- That the doctors would really listen to us and work with us in treating Cole's side-effects.
- That Ava would be an awesome baby, that she would have no reflux and that she would sleep through the night quickly.
Monday, November 3, 2008
Cole Turns 3
On Saturday, November 1, Cole turned 3!
As I write this I thank God that I'm not saying "Cole would have turned 3". Dalynn and I have been thanking the Lord for the fact that we've had one more year with our precious son.
Thank you all for your prayers and help. They have seen us through such a difficult time but days like Saturday continue to drive home to us just how blessed we are. Blessed that we can still celebrate the life of our sweet son.
I'll try to get some pictures posted soon. If you haven't seen a picture of Cole recently (and only have pictures from his initial treatment to go on) then you may thoroughly enjoy some new pictures. He looks like a typical (if somewhat chubby) 3 year old.
We had a party for Cole and invited some friends over. Unfortunately, as is normally the case with us trying to plan birthday parties (we seem to suffer from a birthday party curse), something happened that prevented a lot of folks from coming (that being that half of the folks that were supposed to come, including my mom, got sick). Despite that, though, we had a rousing good time! Cole received many fun toys and he and Rayanna (sorry if I butchered her name, Camille!) played until about 9 that night (having started at 3).
It was so much fun to see Cole interacting with another 3 year old. At one point, they were running around trying to rescue pretend animals from a pretend tiger and dragon all the while calling Diego and Dora on their cell phones. It was quite cute.
All in all, we had a really good weekend and I'm so thankful that we got to throw a party for Cole.
As I write this I thank God that I'm not saying "Cole would have turned 3". Dalynn and I have been thanking the Lord for the fact that we've had one more year with our precious son.
Thank you all for your prayers and help. They have seen us through such a difficult time but days like Saturday continue to drive home to us just how blessed we are. Blessed that we can still celebrate the life of our sweet son.
I'll try to get some pictures posted soon. If you haven't seen a picture of Cole recently (and only have pictures from his initial treatment to go on) then you may thoroughly enjoy some new pictures. He looks like a typical (if somewhat chubby) 3 year old.
We had a party for Cole and invited some friends over. Unfortunately, as is normally the case with us trying to plan birthday parties (we seem to suffer from a birthday party curse), something happened that prevented a lot of folks from coming (that being that half of the folks that were supposed to come, including my mom, got sick). Despite that, though, we had a rousing good time! Cole received many fun toys and he and Rayanna (sorry if I butchered her name, Camille!) played until about 9 that night (having started at 3).
It was so much fun to see Cole interacting with another 3 year old. At one point, they were running around trying to rescue pretend animals from a pretend tiger and dragon all the while calling Diego and Dora on their cell phones. It was quite cute.
All in all, we had a really good weekend and I'm so thankful that we got to throw a party for Cole.
Monday, September 22, 2008
The Quicksilver Knight and the Air Show
We had a really good weekend. Just plain and simple, it was a really good weekend.
Friday afternoon, around 6, I took Cole and Logan to the park. We're at a stage now where Cole pretty much does his own thing while I ride herd on Logan. It's not a bad place to be, and I can manage both boys with little problem over a wide area of space.
On our way home, Cole was a little disappointed to leave, so I decided to tell Cole a story about the Quicksilver Knight. Cole is the Quicksilver Knight (he was wearing a Quiksilver shirt, hehe), you see, and so I told him about all of the amazing things he had done. Like the time he rode through the forest and heard a damsel in distress. Upon investigating, he found her cornered by a dragon. He fought off the dragon and rescued the damsel.
Cole took to the idea like it was genius. All the way home, I regaled him with his exploits and reinforced in him how courageous and just the Quicksilver Knight is. Once we got home, I put a jacket on him and told him it was his Quicksilver Knight jacket, and we went back outside to see Dalynn (who was talking with some neighbors). Cole hurriedly told Mommy all about what he had done as the Quicksilver Knight. There was much posing and running around in the story-telling. It was awesome.
Later that night, Dalynn interrupted him when he was talking to me, and Cole said, "Mommy, when the Quicksilver Knight is talking, you listen!" It was rather cute, and we couldn't help but laugh. I'm sure we don't want to encourage that kind of behavior, but hey, once won't kill us (or him).
Another added benefit of Cole's new persona is that I have him convinced that all the scary monsters are afraid of the Quicksilver Knight. It's pretty cool to see him boldly walking into a dark room because he knows that the monsters won't get him, he's the Quicksilver Knight!
On Saturday, we took the boys to the NAS Oceana air show from about 10:30 am to about 1:30 pm. We went with our friends Anthony, Nerissa and Raymond. Both the boys were mesmerized by the planes and the noises. Neither were afraid of all the loud noises. We got the boys a helicopter toy (which Logan proceeded to demolish over a period of 24 hours) and a die-cast model of an F-4 Phantom II which is currently Cole's favorite possession.
That night, we went down to the ocean front to watch a dusk parachute jump. We had pizza at North End Pizza (which was good) and then headed out onto the board walk just in time to see a plane flying around that was setting off fireworks off of itself. Very cool. Then, another plane flew overhead and out jumped 5 men with boot streamers lit. They parachuted all the way down to a cleared space on the beach. We got right up in the front line of the circle and were able to watch two more waves of jumpers as they landed. It was all very cool stuff.
Sunday, we went to church and just took it easy.
Not a bad weekend to have before Cole gets chemo tomorrow.
Friday afternoon, around 6, I took Cole and Logan to the park. We're at a stage now where Cole pretty much does his own thing while I ride herd on Logan. It's not a bad place to be, and I can manage both boys with little problem over a wide area of space.
On our way home, Cole was a little disappointed to leave, so I decided to tell Cole a story about the Quicksilver Knight. Cole is the Quicksilver Knight (he was wearing a Quiksilver shirt, hehe), you see, and so I told him about all of the amazing things he had done. Like the time he rode through the forest and heard a damsel in distress. Upon investigating, he found her cornered by a dragon. He fought off the dragon and rescued the damsel.
Cole took to the idea like it was genius. All the way home, I regaled him with his exploits and reinforced in him how courageous and just the Quicksilver Knight is. Once we got home, I put a jacket on him and told him it was his Quicksilver Knight jacket, and we went back outside to see Dalynn (who was talking with some neighbors). Cole hurriedly told Mommy all about what he had done as the Quicksilver Knight. There was much posing and running around in the story-telling. It was awesome.
Later that night, Dalynn interrupted him when he was talking to me, and Cole said, "Mommy, when the Quicksilver Knight is talking, you listen!" It was rather cute, and we couldn't help but laugh. I'm sure we don't want to encourage that kind of behavior, but hey, once won't kill us (or him).
Another added benefit of Cole's new persona is that I have him convinced that all the scary monsters are afraid of the Quicksilver Knight. It's pretty cool to see him boldly walking into a dark room because he knows that the monsters won't get him, he's the Quicksilver Knight!
On Saturday, we took the boys to the NAS Oceana air show from about 10:30 am to about 1:30 pm. We went with our friends Anthony, Nerissa and Raymond. Both the boys were mesmerized by the planes and the noises. Neither were afraid of all the loud noises. We got the boys a helicopter toy (which Logan proceeded to demolish over a period of 24 hours) and a die-cast model of an F-4 Phantom II which is currently Cole's favorite possession.
That night, we went down to the ocean front to watch a dusk parachute jump. We had pizza at North End Pizza (which was good) and then headed out onto the board walk just in time to see a plane flying around that was setting off fireworks off of itself. Very cool. Then, another plane flew overhead and out jumped 5 men with boot streamers lit. They parachuted all the way down to a cleared space on the beach. We got right up in the front line of the circle and were able to watch two more waves of jumpers as they landed. It was all very cool stuff.
Sunday, we went to church and just took it easy.
Not a bad weekend to have before Cole gets chemo tomorrow.
Wednesday, August 27, 2008
Something Else to be Thankful For
Something else to be thankful for! Cole got to go fishing for the very first time while we were in Wilmington. Let me tell you, he's a natural. Every time he put his line in the water he pulled a fish, or sometimes two, up. Granddaddy was quite pleased with the whole event. It was also my first time fishing in about, oh, 25 years.
Now, I watch this, and I just think that in January, this was a little boy who couldn't walk...
Things to Be Thankful Over
Man, it's been about a month again, but this time, I'm going to have a positive post.
Things don't seem so overwhelming as they did, which is good, and over the last month I've remembered many things that I have to be thankful for.
Before all of that, though, let me point you to the story of a little girl named Kathryn Leggett. Kathryn has a very rare form of cancer and has just been moved out of the PICU at Duke, back into a regular ward bed. If you'd like to see God at work, read over the last week or so of her Caring Bridge page. Please keep her and her family in your prayers as they face a rough road ahead of them as Kathryn recovers from a bad bout of pancreatitis.
I took last week off of work and Dalynn, the boys and I went to Wilmington. We stayed from Friday to Thursday. It was a very wild, hectic week, but we all survived.
During our stay there, Cole and I got so spend a lot of time in the pool. He learned to swim with swimmies on (the little blow-up balloons you put on kids arms), which was a lot of fun for both of us. At one point, it suddenly struck me that if Cole had a line, we wouldn't be in the pool. We wouldn't be able to go to the beach. He wouldn't even be able to take baths as much as he does (which he loves again, by the way). So, I'm thankful that Cole doesn't have a line.
While we were in Wilmington, Logan came down with rotovirus (a kind of really bad stomach virus that kids can get, but that they can pass on to adults). It's a long story on how he got it, but he did get it from Cole. When Logan got it, he ran a 104.5 fever at one point and had these really nasty green poops. But, when Cole had it, he only had the nasty green poops, not the huge fever. If he'd had the fever, we'd have been in the hospital while they tried to figure it all out, so at least one night in the emergency room, if not a full admission. I'm thankful for that, too. I'm also thankful that Dalynn and I didn't get it (although my mom did). That would have been especially tough on Dalynn with her pregnancy.
There are a lot of other things I'm thankful for, but which I can't really go into right now, unfortunately. Just know that we are all doing well, and even though we're faced with challenges daily, we overcome them daily, as well.
Things don't seem so overwhelming as they did, which is good, and over the last month I've remembered many things that I have to be thankful for.
Before all of that, though, let me point you to the story of a little girl named Kathryn Leggett. Kathryn has a very rare form of cancer and has just been moved out of the PICU at Duke, back into a regular ward bed. If you'd like to see God at work, read over the last week or so of her Caring Bridge page. Please keep her and her family in your prayers as they face a rough road ahead of them as Kathryn recovers from a bad bout of pancreatitis.
I took last week off of work and Dalynn, the boys and I went to Wilmington. We stayed from Friday to Thursday. It was a very wild, hectic week, but we all survived.
During our stay there, Cole and I got so spend a lot of time in the pool. He learned to swim with swimmies on (the little blow-up balloons you put on kids arms), which was a lot of fun for both of us. At one point, it suddenly struck me that if Cole had a line, we wouldn't be in the pool. We wouldn't be able to go to the beach. He wouldn't even be able to take baths as much as he does (which he loves again, by the way). So, I'm thankful that Cole doesn't have a line.
While we were in Wilmington, Logan came down with rotovirus (a kind of really bad stomach virus that kids can get, but that they can pass on to adults). It's a long story on how he got it, but he did get it from Cole. When Logan got it, he ran a 104.5 fever at one point and had these really nasty green poops. But, when Cole had it, he only had the nasty green poops, not the huge fever. If he'd had the fever, we'd have been in the hospital while they tried to figure it all out, so at least one night in the emergency room, if not a full admission. I'm thankful for that, too. I'm also thankful that Dalynn and I didn't get it (although my mom did). That would have been especially tough on Dalynn with her pregnancy.
There are a lot of other things I'm thankful for, but which I can't really go into right now, unfortunately. Just know that we are all doing well, and even though we're faced with challenges daily, we overcome them daily, as well.
Monday, June 30, 2008
News News News
Well, the big news on our front is that Dalynn is pregnant. Let me just say that we were doing everything we could to not become pregnant! As a matter of fact, Dalynn was going to have Mirena put in this month. Mirena is an IUD that also has a low dose of birth control. It's effective for 5 years.
That 5 years part makes me wonder at the timing of all of this. As in, this is the Lord's timing, and not our own. Both of us had been thinking, privately, that 2 was enough. We also had both stated that we didn't want a 3rd while Cole was undergoing treatment. Combine all of that with a birth control that is effective for 5 years, and perhaps we never would have had another child. It's easy to get into a frame of mind when complacency is an option.
To say that we were shocked is an understatement. I believe "floored" is more appropriate. Dalynn recovered faster than I did, though. It took me about a day to get over the shock of it all. It certainly didn't fit into any of my plans for our family right now. We certainly didn't need to borrow trouble...
But, trouble is what this baby is not, and I've come to accept that. The logistics of it all are still prone to make me feel like the bottom has dropped out from underneath me, but we have 8 more months to begin coping with all of that.
When Dalynn told Cole that "there's a baby growing in Mommy's belly", Cole responded with the statement, "A baby girl." He says "girl" like you would say "grill", it's quite cute. Logan has been vary tacit on the situation, though. We wonder if he's already lamenting the loss of his position as the baby...
Speaking of Logan, he's walking, now. And I mean, walking. He can motor around the house and has started playing chase with Cole and I. Normally, he's the chaser, as he hasn't quite figured out how to be an effective chasee. He still hasn't figured out how to stand up without something to lean on, but once he's up, he's off.
It's quite interesting to see how differently our children are developing. By this age (10.5 months) Cole was talking, but Logan isn't. I think he has a total of 4 words: "bye", "momma", "ba-ba" (bottle) and "dada". "Dada" he says very rarely. Conversely, Cole didn't walk until 13 months, while Logan has been walking for 2 weeks. So, in that regard, Logan is more advanced physically than Cole was. All the differences are quite fascinating.
Finally, discipline has become some kind of monumental feat. On the weekends, when I'm around all day, I feel like I do nothing but discipline (mainly Cole). Dalynn feels like she spends all of her time disciplining. If 5 minutes go by without me having to say something, it's quite unusual.
I think the difficult thing for us, and something we haven't figured out how to balance, is how to draw the line between being in treatment and being 2. We want to have grace if something is being caused by being in treatment. If Cole is just feeling run-down due to his chemo we don't want to drag him around the city. If he's cranky for the same reason, we would prefer to allow him to take a nap.
On the other hand if he's being demanding because he's 2, well, we want to nip that in the bud. It's just that often times, it's difficult to figure out which one is which. What makes it more difficult is that Cole is learning how to manipulate us! In the middle of being disciplined, he'll tell us, "I hurt!" or "I'm tired!". He doesn't, not really, but it's hard to be discerning enough to know when he's pulling the wool over our eyes.
I've never raised a 2 year old before, so I have no real frame of reference. I can't say for sure that raising a 2 year old in treatment for cancer is more difficult (though my hunch is that it is), but I can certainly say that raising a 2 year old in treatment for cancer is more confusing!
That 5 years part makes me wonder at the timing of all of this. As in, this is the Lord's timing, and not our own. Both of us had been thinking, privately, that 2 was enough. We also had both stated that we didn't want a 3rd while Cole was undergoing treatment. Combine all of that with a birth control that is effective for 5 years, and perhaps we never would have had another child. It's easy to get into a frame of mind when complacency is an option.
To say that we were shocked is an understatement. I believe "floored" is more appropriate. Dalynn recovered faster than I did, though. It took me about a day to get over the shock of it all. It certainly didn't fit into any of my plans for our family right now. We certainly didn't need to borrow trouble...
But, trouble is what this baby is not, and I've come to accept that. The logistics of it all are still prone to make me feel like the bottom has dropped out from underneath me, but we have 8 more months to begin coping with all of that.
When Dalynn told Cole that "there's a baby growing in Mommy's belly", Cole responded with the statement, "A baby girl." He says "girl" like you would say "grill", it's quite cute. Logan has been vary tacit on the situation, though. We wonder if he's already lamenting the loss of his position as the baby...
Speaking of Logan, he's walking, now. And I mean, walking. He can motor around the house and has started playing chase with Cole and I. Normally, he's the chaser, as he hasn't quite figured out how to be an effective chasee. He still hasn't figured out how to stand up without something to lean on, but once he's up, he's off.
It's quite interesting to see how differently our children are developing. By this age (10.5 months) Cole was talking, but Logan isn't. I think he has a total of 4 words: "bye", "momma", "ba-ba" (bottle) and "dada". "Dada" he says very rarely. Conversely, Cole didn't walk until 13 months, while Logan has been walking for 2 weeks. So, in that regard, Logan is more advanced physically than Cole was. All the differences are quite fascinating.
Finally, discipline has become some kind of monumental feat. On the weekends, when I'm around all day, I feel like I do nothing but discipline (mainly Cole). Dalynn feels like she spends all of her time disciplining. If 5 minutes go by without me having to say something, it's quite unusual.
I think the difficult thing for us, and something we haven't figured out how to balance, is how to draw the line between being in treatment and being 2. We want to have grace if something is being caused by being in treatment. If Cole is just feeling run-down due to his chemo we don't want to drag him around the city. If he's cranky for the same reason, we would prefer to allow him to take a nap.
On the other hand if he's being demanding because he's 2, well, we want to nip that in the bud. It's just that often times, it's difficult to figure out which one is which. What makes it more difficult is that Cole is learning how to manipulate us! In the middle of being disciplined, he'll tell us, "I hurt!" or "I'm tired!". He doesn't, not really, but it's hard to be discerning enough to know when he's pulling the wool over our eyes.
I've never raised a 2 year old before, so I have no real frame of reference. I can't say for sure that raising a 2 year old in treatment for cancer is more difficult (though my hunch is that it is), but I can certainly say that raising a 2 year old in treatment for cancer is more confusing!
Sunday, June 1, 2008
Well, it's been 2 weeks since I last posted, but this is one of those situations where no news is good news. It's so much easier to keep a regular posting regimen going when there's a lot of bad stuff (or even just some bad stuff) to report. When nothing of note is happening I consider that a good thing, especially considering the last 6 months.
I will report, however, that the great yard experiment is a success! I roto-tilled part of our backyard (about 2/3), seeded and fertilized it. I now have swaths of lush, green grass to rub my toes in. There are a few bare spots, but I've reseeded since then and that will hopefully take care of that. Having a "nice" yard is surprisingly satisfying, and I certainly take too much pride in it. But, I'll take what I can, hehe.
I've also maintained my swimming and am now up to 3/4 of a mile each time I swim. It took me two weeks to work up to 3/4 of a mile (which is 27 50 yard laps). Considering that the first time I went swimming I had to take a break to catch my breath after I was done with 4 laps, I consider what I've done to this point pretty monumental. Not only that, but two of the guys I work with are also going to start swimming, as well. Maybe we can have some kind of competition to spur us all on.
I can't say for sure if I've lost any weight yet, but I think I can tell a difference in my face and belly. It certainly seems easier to see my toes. I'm kind of disappointed that I never did take that "before" picture. I should still take one, and just make a note that it was taken at the 2.5 week mark. I also don't know what my starting weight was, nor do I know what my weight is now. For me, fitting into my clothes better will be a good indicator of success. Fitting into a waste size of 36 will be a resounding success (I wear a size 38 waste now, and that was getting a bit snug).
Logan is doing great. He took his first steps the other day, but has only repeated them once so far. I missed the first ones, but caught his second out of the corner of my eye. I expect that he's going to be a hard one to pin down once he finally gets his feet under him. He's already climbing the steps and he's quick about that. If you don't watch him, he'll zip up the steps before you can do anything about it.
Cole is also doing well. He has continued to recover his mobility skills and is now at a point again where he's running. It's not fast, but it's a definite run. He's climbing playground equipment again as well. I have to say, he made it through delayed intensification way better than I thought he would.
Tuesday sees him getting another dose of vincristine and a 5 day course of steroids, blah. It's hard to say which of those two I hate the most. Vincristine for the constipation and consequent enemas or steroids for how moody and hungry he gets. Probably the steroids. Still, 5 days is easier to deal with than 21 or 28. I will count my blessings there.
I will report, however, that the great yard experiment is a success! I roto-tilled part of our backyard (about 2/3), seeded and fertilized it. I now have swaths of lush, green grass to rub my toes in. There are a few bare spots, but I've reseeded since then and that will hopefully take care of that. Having a "nice" yard is surprisingly satisfying, and I certainly take too much pride in it. But, I'll take what I can, hehe.
I've also maintained my swimming and am now up to 3/4 of a mile each time I swim. It took me two weeks to work up to 3/4 of a mile (which is 27 50 yard laps). Considering that the first time I went swimming I had to take a break to catch my breath after I was done with 4 laps, I consider what I've done to this point pretty monumental. Not only that, but two of the guys I work with are also going to start swimming, as well. Maybe we can have some kind of competition to spur us all on.
I can't say for sure if I've lost any weight yet, but I think I can tell a difference in my face and belly. It certainly seems easier to see my toes. I'm kind of disappointed that I never did take that "before" picture. I should still take one, and just make a note that it was taken at the 2.5 week mark. I also don't know what my starting weight was, nor do I know what my weight is now. For me, fitting into my clothes better will be a good indicator of success. Fitting into a waste size of 36 will be a resounding success (I wear a size 38 waste now, and that was getting a bit snug).
Logan is doing great. He took his first steps the other day, but has only repeated them once so far. I missed the first ones, but caught his second out of the corner of my eye. I expect that he's going to be a hard one to pin down once he finally gets his feet under him. He's already climbing the steps and he's quick about that. If you don't watch him, he'll zip up the steps before you can do anything about it.
Cole is also doing well. He has continued to recover his mobility skills and is now at a point again where he's running. It's not fast, but it's a definite run. He's climbing playground equipment again as well. I have to say, he made it through delayed intensification way better than I thought he would.
Tuesday sees him getting another dose of vincristine and a 5 day course of steroids, blah. It's hard to say which of those two I hate the most. Vincristine for the constipation and consequent enemas or steroids for how moody and hungry he gets. Probably the steroids. Still, 5 days is easier to deal with than 21 or 28. I will count my blessings there.
Wednesday, May 14, 2008
Dance Dance!
Baylee and Cole have quite a career as ballroom dancers, I'm thinking.
We're sad to say that Baylee and her family are moving this weekend. They have been such a blessing to us before, but especially during, Cole's treatment. Peter is in the Navy and is being transferred. That's a pretty common story around here, but it's none the less sad for all of that.
Cole and Baylee get along so well, and play so well together. I know that Cole will miss Baylee. Cole wants to go over there every night (though that might be to play with all of Baylee's toys, hmmm...).
So, we're sad to see them go, and wish them all the best! Hopefully, we'll all be able to get together at some point and do some catching up.
It's been a while since I posted, sorry about that. Let me give you a quick update on how things are going.
Cole is doing wonderful. He's now in maintenance, which is awesome. Not to say that things can't still be difficult, but we're through the official hard parts.
Just two days ago, Cole and I went outside and he played in the court with all the other kids just like a normal 2 year old. He's walking and climbing well, dancing (as you can see) and in general is a delight to be around. He has enormous amounts of energy, let me tell you. We often wonder where he gets it from. He just goes and goes.
Logan is also doing well, though he has a little virus right now. His first teeth are peeking through and he's mobile. There's just no other way to describe it, hehe. The virus isn't really keeping him down that much. He still follows Cole and I around while we're all playing.
I think one of the funniest things about Logan is that he gets frustrated so easy, and when he's frustrated, he starts yelling. He gets frustrated when he can't open the bathroom door. He gets frustrated if you don't turn the pages of a book fast enough. He gets frustrated if you don't feed him fast enough. All of these are accompanied by a very vocal declamation of his frustration. I think he gets it from Dalynn, to be quite honest... ;)
Dalynn and I are also doing well. We're trying to plan some family trips this summer to see our extended families. Scheduling is a little difficult, as we're limited in our windows for travel. Cole gets big chemo at the beginning of every month, and that pretty much shoots the next week down. He just doesn't feel well enough to travel. So, there's really only 2.5 to 3 weeks a month that we can do something in. Hey, at least we have that, right?
We'd like to take the boys up to DC this summer, as well, to meet their great-great Grandma Steger. She's in her 90s and still lives by herself just outside of DC. When we go, we'll take the boys to see the Natural History Museum, the Air and Space Museum and the National Zoo. Logan's a little young to remember it, but we're pretty sure that Cole will love it. I can't say what excites me most, taking Cole to see dinosaur skeletons or taking Cole to see real live rocket ships...
Sunday, April 27, 2008
Mortality
Something has been niggling at my brain about Cole for a few weeks. It finally hit me tonight while Cole and I were outside playing with some neighborhood kids.
Before Cole got sick, he always had this devil-may-care twinkle in his eyes. He just looked like he was up to something most of the time. This is the first picture I ever took with our digital camera, and it's a little old, but it portrays the idea I'm talking about:
Besides being adorably cute, doesn't he look like he's up to something?
Now, take a look at the picture that heads the top of the column on the right. I see a happy boy, but I don't really see the devil-may-care twinkle.
I was watching Cole interact with the neighborhood kids tonight, and a couple of them were riding scooters. Whenever they'd come riding by, Cole would crowd up to me on the sidewalk and kind of hide behind me. This struck me as a little different than Cole might have acted before he got sick.
I started wondering what the difference was, and it didn't take me long to arrive at the conclusion that Cole is somehow aware of his own mortality. I'm sure that that's not how he would think of it, but he's aware that things can go wrong. And, I guess they have for him at times.
So, with him hiding behind me on the sidewalk, I started thinking about how old I was when I think I realized that I was mortal. I was probably between 17 and 21. It seems sad to me that Cole should be aware of this at this age, and I can only hope that the realization fades.
I had a lot more I wanted to say, but it's kind of all out the window, now. I hope you can just read between the lines.
Before Cole got sick, he always had this devil-may-care twinkle in his eyes. He just looked like he was up to something most of the time. This is the first picture I ever took with our digital camera, and it's a little old, but it portrays the idea I'm talking about:
Besides being adorably cute, doesn't he look like he's up to something?
Now, take a look at the picture that heads the top of the column on the right. I see a happy boy, but I don't really see the devil-may-care twinkle.
I was watching Cole interact with the neighborhood kids tonight, and a couple of them were riding scooters. Whenever they'd come riding by, Cole would crowd up to me on the sidewalk and kind of hide behind me. This struck me as a little different than Cole might have acted before he got sick.
I started wondering what the difference was, and it didn't take me long to arrive at the conclusion that Cole is somehow aware of his own mortality. I'm sure that that's not how he would think of it, but he's aware that things can go wrong. And, I guess they have for him at times.
So, with him hiding behind me on the sidewalk, I started thinking about how old I was when I think I realized that I was mortal. I was probably between 17 and 21. It seems sad to me that Cole should be aware of this at this age, and I can only hope that the realization fades.
I had a lot more I wanted to say, but it's kind of all out the window, now. I hope you can just read between the lines.
Thursday, April 17, 2008
Surprise Surprise
Well, they discharged Cole yesterday around 6 pm. He was happy to go home and see his little brother and Granddaddy.
He starts his second round of Cytarabine today, so we're praying he doesn't run any fevers, as that would put us straight back into the hospital. Please pray with us.
He starts his second round of Cytarabine today, so we're praying he doesn't run any fevers, as that would put us straight back into the hospital. Please pray with us.
Tuesday, April 15, 2008
Line Out
Well, Cole's line is out. It came out last night and they started an IV at the same point. Before they took the line out, though, they topped him off with some red blood, so hopefully he'll be feeling even better.
Dalynn and I are now planning on being in the hospital for at least another week, perhaps longer. One of the doctors has made noises about us going home soon, but we're not putting much stock in that. Our thinking is that we may just opt to stay in for another week.
The reason is that his ANC is going to be down below 500 and he starts cytaribine again on Thursday. With cytaribine, he seems to run a low grade fever. Since his ANC is below 500, if he does run a fever then that's an automatic trip to the hospital for an extended stay til such a time as either his counts come back up or his fever goes away for at least 24 hours. Consequently, we'd probably end up leaving the hospital for a day only to find ourselves right back in.
We've done that before (left the hospital for a day, only to turn right around and come back) and it's really just not worth it. It takes forever to get admitted, first off, and now we're "set up" at the hospital. We have a bunch of clothes there, food for Cole, we have toys from the play room and we have a room that we like. Why pack all that up, haul it home for a night, then go back?
So, we're looking at this as being in for the "long haul". Hopefully it won't be for more than a week, but if it is, we're prepared.
Dalynn and I are now planning on being in the hospital for at least another week, perhaps longer. One of the doctors has made noises about us going home soon, but we're not putting much stock in that. Our thinking is that we may just opt to stay in for another week.
The reason is that his ANC is going to be down below 500 and he starts cytaribine again on Thursday. With cytaribine, he seems to run a low grade fever. Since his ANC is below 500, if he does run a fever then that's an automatic trip to the hospital for an extended stay til such a time as either his counts come back up or his fever goes away for at least 24 hours. Consequently, we'd probably end up leaving the hospital for a day only to find ourselves right back in.
We've done that before (left the hospital for a day, only to turn right around and come back) and it's really just not worth it. It takes forever to get admitted, first off, and now we're "set up" at the hospital. We have a bunch of clothes there, food for Cole, we have toys from the play room and we have a room that we like. Why pack all that up, haul it home for a night, then go back?
So, we're looking at this as being in for the "long haul". Hopefully it won't be for more than a week, but if it is, we're prepared.