Oh steroids, how I have NOT missed you!
Holy cow! If the first round of steroids was difficult, they barely scratched the surface when it comes to tears. So far, Matthew and I have been up and about for about 3 & 1/2 hours, and he has only stopped crying for tiny, short intervals (like 30 seconds to a minute). He's crying because he misses his friends at school, he wants mac & cheese with hotdogs (both of which we are all out of!), he wants me to watch his show with him, he doesn't want the TV in the other room to be on the same show as his, and because I gave him popcorn (which he asked for and helped me make) but he wanted to save it for Mikey. I told him that I sent Mikey to school with a good lunch, and he won't be hungry, and then Matthew cried again because he misses his school. All the while, he is eating. Nothing satisfies his cravings completely, so he eats half, and then asks for something else. He is running me ragged!
Thank heavens this is only for a week. We are only on day 2, though. It's going to be a LONG week!
Clinic yesterday went pretty smoothly. And thank you to my sister, Melissa, for coming with me so I wouldn't have to do it alone! He was pretty moody during the visit, but it was just a preview for today's show. One of his big cravings the last few weeks has been bacon. One day last week, he ate 2 pieces on the way to the clinic, 4 pieces at clinic, and 5 or 6 more at home that day. Normally, I would think that would be alarming, but when he's already losing weight, and he's eating very little and not holding it all down, I give him the food he wants.
Yesterday was the last dose of the horrible, awful Doxorubicin. Thank heavens!
His ANC (Absolute Neutrophil Count) was 100 yesterday. That's essentially no ability to fight off infection. Right now, he's not even equipped to fight off the germs that normally live in all our bodies. The next couple of weeks will be touch and go. If he's exposed to anything, it will likely land him in the hospital. I know I keep saying that, but this is truly on the verge.
One nice thing is that he doesn't have to get any Chemo for 2 weeks. December 13th is his next appointment. He has to have time to recover from what's going on with him right now before we move on. This phase seems to do this to all the kids, so the break is built into the protocol. The nurse said if he hasn't recovered his counts in 2 weeks, we'll delay even one more week before starting the second half of this phase.
I just love the staff at the clinic! They have worked hard to figure out what Matthew's needs are and help him through the tough days. The nurse who was doing the vitals yesterday poked her head in and said she reads the blog. Not just Matthew's but she said she likes how we all have our blogs linked to each other's. She likes to stay on top of what's happening with all the cancer kids in case she doesn't see them at clinic for a while, then she's caught up when they come. Isn't that touching? She is a fine example of a medical professional who truly cares about her patients! (If you're reading this, thank you Paige! It means a lot!)
Hopefully we'll start to put up our Christmas decorations this weekend, but we'll see how it goes.
Wish us luck with the emotional week ahead!
Wednesday, November 30, 2011
Monday, November 28, 2011
Tough Times
Okay, I've been avoiding this post because it's going to be hard for everyone to read. But I know everyone also wants to be updated, and I want to keep a good record - for better or worse. So, here goes.
Matthew has had a really rough couple of weeks. Doxorubicin is awful, nasty stuff! When he was on the steroids, we thought he was whiny because of them, but it never stopped after the steroids did, so I think it's just that he feels like crap. I'd be whiny too. He sometimes goes a whole day without eating anything. He's really tired - sleeping an extra 3 hours some nights, and sometimes adding a 2-3 hour nap. He's looking thin again. And paler. What's the worst, though, is that he's sick to his stomach. And it's totally unpredictable.
He's had two doses of Doxorubicin so far. The first time, he woke up in the middle of the night - roughly 14 hours after his treatment - and threw up like crazy all night. It took about 8 hours of anti-nausea medicines to get it under control. Then, we kept giving the nausea meds for a couple of days, just to be sure.
The second time on the Doxo, we gave him anti-nausea meds for the first 3 days religiously. 3 different meds - 2 at the earliest interval allowed (Zofran and Ativan) and 1 as a back up, in case the two weren't enough (Benadryl). When we slowed down on the meds, he got sick for the whole afternoon. 3 days after the treatment! So, we're still trying to figure out the best way to manage the nausea.
He's had low grade fevers, which always make me nervous. His fevers have stayed in the 99.something range - the highest being 99.9 degrees. They told us in the beginning that if his fevers were above 100 for an hour, we should call, but if they were over 101, we should g0 to the ER. But when they're 99, you just wait and watch. So, it's just enough to make me nervous, and put me on alert. I guess that's better than the alternative - a higher temp would likely hospitalize him.
The extra sleeping makes me sad. He used to be so busy, I couldn't even get him to bed at his regular bedtime. I always had to struggle for like an hour to get him to bed, which was frustrating, for sure, but now he's so tired he puts himself to bed, and sometimes it's as much as 2 and a half hours early. I think it's sad. Before, I would have longed for that, but now, It just reminds me of how fragile he is. How weak these drugs make him. I hate it.
He's had a couple of especially rough days. On these days, you know he's suffering and doesn't know how to verbalize it. He won't let us leave him alone - even for a minute. If he's watching TV, he wants someone to watch with him. It's not good enough to be in the same room doing your own thing - like getting on the computer. You have to sit and watch with him. I fell asleep during one of these days, and he got really upset with me. On these days, if he's eating, you are required to share his meal, if he's playing, you are required to play with him. He must be with someone at all times. I decided that's his way of asking us not to make him go through it alone, and we are doing our best to accommodate his requests, because we can't imagine how hard this must be for him, and he has no way of telling us.
My heart breaks for him. My sweet little boy. He has always been so charming, so charismatic, so happy, independent and headstrong. Now, he's fragile and tired, and desperately avoids being alone. I hope in the end, he can find his true self again. I hope we all can.
The one silver lining is that I have started counting the weeks to Maintenance. It helps me see a light at the end of this dark tunnel.
He has 14 more weeks to go until Maintenance.
Even though we totally can't afford it, we're talking about taking a family vacation this summer. We have a friend whose family lives on a huge piece of land in Southern Oregon - in a town I love from my childhood, Bandon. She has invited us to go with her this summer, so that might be one way to make it happen. But also, we're hoping that when we sign Matthew up for Make-A-Wish, a trip will be what he wants. He talks about the beach often, he loved it so much last year. So, I do think that's a real possibility. I don't know how you get a four year old to understand the depth of being granted ANY wish he wants. We'll play it by ear when we get there, though. I want it to be HIS wish.
For now, I cling to that countdown. 14 more weeks. It doesn't mean he'll be done, it just means it won't be so rigorous. But it's a big milestone, and I really need to look forward to it.
So, here's to week 15! The first week with no doctors, no CBC, no pokes. Spring will bring so much more than nicer weather to the Burr household. Better times are coming.
Matthew has had a really rough couple of weeks. Doxorubicin is awful, nasty stuff! When he was on the steroids, we thought he was whiny because of them, but it never stopped after the steroids did, so I think it's just that he feels like crap. I'd be whiny too. He sometimes goes a whole day without eating anything. He's really tired - sleeping an extra 3 hours some nights, and sometimes adding a 2-3 hour nap. He's looking thin again. And paler. What's the worst, though, is that he's sick to his stomach. And it's totally unpredictable.
He's had two doses of Doxorubicin so far. The first time, he woke up in the middle of the night - roughly 14 hours after his treatment - and threw up like crazy all night. It took about 8 hours of anti-nausea medicines to get it under control. Then, we kept giving the nausea meds for a couple of days, just to be sure.
The second time on the Doxo, we gave him anti-nausea meds for the first 3 days religiously. 3 different meds - 2 at the earliest interval allowed (Zofran and Ativan) and 1 as a back up, in case the two weren't enough (Benadryl). When we slowed down on the meds, he got sick for the whole afternoon. 3 days after the treatment! So, we're still trying to figure out the best way to manage the nausea.
He's had low grade fevers, which always make me nervous. His fevers have stayed in the 99.something range - the highest being 99.9 degrees. They told us in the beginning that if his fevers were above 100 for an hour, we should call, but if they were over 101, we should g0 to the ER. But when they're 99, you just wait and watch. So, it's just enough to make me nervous, and put me on alert. I guess that's better than the alternative - a higher temp would likely hospitalize him.
The extra sleeping makes me sad. He used to be so busy, I couldn't even get him to bed at his regular bedtime. I always had to struggle for like an hour to get him to bed, which was frustrating, for sure, but now he's so tired he puts himself to bed, and sometimes it's as much as 2 and a half hours early. I think it's sad. Before, I would have longed for that, but now, It just reminds me of how fragile he is. How weak these drugs make him. I hate it.
He's had a couple of especially rough days. On these days, you know he's suffering and doesn't know how to verbalize it. He won't let us leave him alone - even for a minute. If he's watching TV, he wants someone to watch with him. It's not good enough to be in the same room doing your own thing - like getting on the computer. You have to sit and watch with him. I fell asleep during one of these days, and he got really upset with me. On these days, if he's eating, you are required to share his meal, if he's playing, you are required to play with him. He must be with someone at all times. I decided that's his way of asking us not to make him go through it alone, and we are doing our best to accommodate his requests, because we can't imagine how hard this must be for him, and he has no way of telling us.
My heart breaks for him. My sweet little boy. He has always been so charming, so charismatic, so happy, independent and headstrong. Now, he's fragile and tired, and desperately avoids being alone. I hope in the end, he can find his true self again. I hope we all can.
The one silver lining is that I have started counting the weeks to Maintenance. It helps me see a light at the end of this dark tunnel.
He has 14 more weeks to go until Maintenance.
Even though we totally can't afford it, we're talking about taking a family vacation this summer. We have a friend whose family lives on a huge piece of land in Southern Oregon - in a town I love from my childhood, Bandon. She has invited us to go with her this summer, so that might be one way to make it happen. But also, we're hoping that when we sign Matthew up for Make-A-Wish, a trip will be what he wants. He talks about the beach often, he loved it so much last year. So, I do think that's a real possibility. I don't know how you get a four year old to understand the depth of being granted ANY wish he wants. We'll play it by ear when we get there, though. I want it to be HIS wish.
For now, I cling to that countdown. 14 more weeks. It doesn't mean he'll be done, it just means it won't be so rigorous. But it's a big milestone, and I really need to look forward to it.
So, here's to week 15! The first week with no doctors, no CBC, no pokes. Spring will bring so much more than nicer weather to the Burr household. Better times are coming.
Saturday, November 19, 2011
A Rough Week
It's been a rough week. Matthew took until at least Thursday to even want to look at food, and he is still not himself. He had the Peg Asparaginase on Friday, which I found out is totally different that any other type of Chemo that he'll get. Most Chemo kills cells, but this is some kind of enzyme. The nurse said it doesn't even make patients nauseous, and they didn't give him anything for nausea. But you have to stay for an hour after the treatment ends to make sure there isn't an allergic reaction.
Matthew's been sleeping in our bed, and he's not sleeping well, which means neither are Justin or I. Lack of sleep makes me a bawl-baby. I hope the people I work with don't judge me too harshly! In seriousness, though, I work with some of the greatest folks I've ever met. They were very kind and understanding, as I had a little breakdown at work on Saturday.
It's hard; the emotional mess this whole thing brings about. But we are plodding ahead as patiently as possible, one day at a time. Sunday was good for me, and I felt my spirits lift, and my outlook changed. I am refreshed now, and ready for more work tonight. Bring it.
I hate steroids. Hate hate hate. Can't say that enough. I hate them worse than Chemo (except Doxorubicin. That stuff is evil!) On top of not feeling good, in general, the steroids make him really emotional. I've been surprised this time, because there have been no food marathons, just a few things that are clearly cravings - like popcorn and pizza with breadsticks. And last time, they made him pretty angry, and this time, he's sad. I think sad is harder. Last Thursday night, he bawled his eyes out for an hour because he wanted to go to my Sister-in-law's house. Finally, I called her, and she invited us over. Thanks, Andrea! You're a life-saver! He was happy as could be once we got there. Yesterday, he waited at the window in our living room for hours for his pre-school teacher to come over. She comes every Wednesday evening, and we could not convince him it wasn't going to happen yesterday. He just patiently waited. We waited with him. At least he didn't have to be alone. Poor baby.
But the last dose of steroids for this pulse is Tuesday morning. One more tonight, and then one in the morning, and we get a week off of the steroids. Then another week on.
If I don't make it back on here before Thanksgiving, I just want to share some of the things I've been reflecting on.
I don't think words can express the gratitude I have this year for so many things I had never really put too much thought into before.
I am so very thankful for doctors. People give doctors a hard time because of money and politics, but the truth is, most of them are in it to help people. That is especially true of doctors who do things like pediatric oncology. Who chooses that as their job, knowing that day in and day out, they will see children suffer? They do it because they're selfless, and they want to make the world a better place for these little ones. I'm sure of it. Yes, they make a lot of money, but you know what? They should. They save lives. Tiny lives. Matthew's doctor has been in pediatric oncology for 20 or 30 years (I can't remember for sure) and if you really think about that, what that means is that she started her career at a time in history when most of the time, the kids died. Thank heavens she persevered through that. Thank you Dr. Afify! You're a lifesaver. For real.
I am also thankful for nurses. They work tirelessly to make people comfortable. They bring food and entertainment, and medicine. They watch and monitor, and help you get through. They often sacrifice of themselves enough to skip breaks and lunches, and they jump through a lot of hoops to make their patients happy. I am especially thankful for the nurses in the oncology clinic at Primary's, and the nurses in the ICS. They are so patient with kids who are so tired of being nursed. They make it livable for the families who are going through the worst nightmare of their lives.
I am thankful for programs like Child Life. They help the kids cope. What a powerful thing! It's hard enough for adults to cope, but kids don't even understand what's happening. They do more than that, though. They help the parents to help the kids to cope. So, we go home with tools to keep up what they started. What a blessing.
I am thankful for my family's overall health. I've been a mother for almost 17 years now, and before Matthew's cancer diagnosis, the worst health problems we had ever seen our children suffer were 2 broken elbows (well - the same one, twice), and two sets of stitches (on the same lip). We have seen 1 flu, and 1 burst eardrum as a result of a raging ear infection. We have also seen a number of seizures, but only one Grand Maul, and the condition was outgrown. At 17 years, with 4 children. Those are pretty good numbers, I think. My children are healthy, and don't require medical intervention in their lives, and for that, I am very grateful.
I'm grateful for service. People have so enthusiastically found ways to provide service for us, in a time when we were in such need. I can never say thank you enough. It has changed the way we look at the world.
Mostly, though, on this Thanksgiving, as I prepare to make my very first Thanksgiving feast (Matthew can't go to the big family shin-digs, because his counts will be down), I am thankful for the life of my son. He is such a blessing to our family. When he came to us, we were complete. I am so thankful that the Lord saw fit to let us keep him!
Happy Thanksgiving, friends and family! Hug your children extra hard this week, and really savor the time you have with them. It's a blessing, every day.
Matthew's been sleeping in our bed, and he's not sleeping well, which means neither are Justin or I. Lack of sleep makes me a bawl-baby. I hope the people I work with don't judge me too harshly! In seriousness, though, I work with some of the greatest folks I've ever met. They were very kind and understanding, as I had a little breakdown at work on Saturday.
It's hard; the emotional mess this whole thing brings about. But we are plodding ahead as patiently as possible, one day at a time. Sunday was good for me, and I felt my spirits lift, and my outlook changed. I am refreshed now, and ready for more work tonight. Bring it.
I hate steroids. Hate hate hate. Can't say that enough. I hate them worse than Chemo (except Doxorubicin. That stuff is evil!) On top of not feeling good, in general, the steroids make him really emotional. I've been surprised this time, because there have been no food marathons, just a few things that are clearly cravings - like popcorn and pizza with breadsticks. And last time, they made him pretty angry, and this time, he's sad. I think sad is harder. Last Thursday night, he bawled his eyes out for an hour because he wanted to go to my Sister-in-law's house. Finally, I called her, and she invited us over. Thanks, Andrea! You're a life-saver! He was happy as could be once we got there. Yesterday, he waited at the window in our living room for hours for his pre-school teacher to come over. She comes every Wednesday evening, and we could not convince him it wasn't going to happen yesterday. He just patiently waited. We waited with him. At least he didn't have to be alone. Poor baby.
But the last dose of steroids for this pulse is Tuesday morning. One more tonight, and then one in the morning, and we get a week off of the steroids. Then another week on.
If I don't make it back on here before Thanksgiving, I just want to share some of the things I've been reflecting on.
I don't think words can express the gratitude I have this year for so many things I had never really put too much thought into before.
I am so very thankful for doctors. People give doctors a hard time because of money and politics, but the truth is, most of them are in it to help people. That is especially true of doctors who do things like pediatric oncology. Who chooses that as their job, knowing that day in and day out, they will see children suffer? They do it because they're selfless, and they want to make the world a better place for these little ones. I'm sure of it. Yes, they make a lot of money, but you know what? They should. They save lives. Tiny lives. Matthew's doctor has been in pediatric oncology for 20 or 30 years (I can't remember for sure) and if you really think about that, what that means is that she started her career at a time in history when most of the time, the kids died. Thank heavens she persevered through that. Thank you Dr. Afify! You're a lifesaver. For real.
I am also thankful for nurses. They work tirelessly to make people comfortable. They bring food and entertainment, and medicine. They watch and monitor, and help you get through. They often sacrifice of themselves enough to skip breaks and lunches, and they jump through a lot of hoops to make their patients happy. I am especially thankful for the nurses in the oncology clinic at Primary's, and the nurses in the ICS. They are so patient with kids who are so tired of being nursed. They make it livable for the families who are going through the worst nightmare of their lives.
I am thankful for programs like Child Life. They help the kids cope. What a powerful thing! It's hard enough for adults to cope, but kids don't even understand what's happening. They do more than that, though. They help the parents to help the kids to cope. So, we go home with tools to keep up what they started. What a blessing.
I am thankful for my family's overall health. I've been a mother for almost 17 years now, and before Matthew's cancer diagnosis, the worst health problems we had ever seen our children suffer were 2 broken elbows (well - the same one, twice), and two sets of stitches (on the same lip). We have seen 1 flu, and 1 burst eardrum as a result of a raging ear infection. We have also seen a number of seizures, but only one Grand Maul, and the condition was outgrown. At 17 years, with 4 children. Those are pretty good numbers, I think. My children are healthy, and don't require medical intervention in their lives, and for that, I am very grateful.
I'm grateful for service. People have so enthusiastically found ways to provide service for us, in a time when we were in such need. I can never say thank you enough. It has changed the way we look at the world.
Mostly, though, on this Thanksgiving, as I prepare to make my very first Thanksgiving feast (Matthew can't go to the big family shin-digs, because his counts will be down), I am thankful for the life of my son. He is such a blessing to our family. When he came to us, we were complete. I am so thankful that the Lord saw fit to let us keep him!
Happy Thanksgiving, friends and family! Hug your children extra hard this week, and really savor the time you have with them. It's a blessing, every day.
Wednesday, November 16, 2011
The Big Guns
Well, it turns out I was wrong about which order Matthew's Chemo would be given in this week. He had Vincristine and Doxorubicin yesterday, and will get Peg Asparaginase on Friday.
All along, I've said how well Matthew handles the Chemo. He is really made out of some seriously hearty stuff. He still eats - not super well, but well enough. He has maintained his weight. He has not been nauseous.
We've had a prescription in the cupboard for a long time that helps with nausea, and we've only used it once before.
The Doxorubicin is going to change all of that. I am thankful that it's only for 8 weeks. He was up sick all night long. I gave him the Zofran (anti-nausea) but he kept getting sick, and I'm pretty sure he didn't get much benefit from it. He's finally sleeping peacefully right now, and I'm sitting here pondering.
I recently posted about how we have been lucky, and so many families have it so much worse than we do. Right now, I feel like a real cancer mom. Haggard and tired, and really worried about my son.
He also started steroids again yesterday. I am preparing for food marathons, and some weight gain. I have decided a whole new cruelty of this disease is giving a child medicine that will make him ravenous with hunger, combined with a medicine that will make him throw up everything he eats. It will only fuel the beast. Last night, as I gave him his first dose of steroids, I wanted to cry. I hate doing this to my baby boy. Steroids are so awful. He'll take them for 7 days, then have a 7 day break, then take them for another 7 days. They call that a pulse.
He understands better than I expected, though. Yesterday, at the clinic, he was playing with the child-life specialist, and he started drawing pictures for her on the whiteboard. It was a blob-body, and he drew cancer inside of it. Then marker-medicine went in the blob's mouth, and down its throat, and scribbled out the cancer. But then another cancer came, and he had to do it again. And again. And again. It was so cute, and it amazes me how wise he is. But it's sad to me that my 4 year old has to be that wise.
The bright side is that this is the big guns. This is what's going to save my baby. And it's only for 8 weeks. Then 8 more weeks of Interim Maintenance II, a mirror image of the phase we just got out of, albeit with increased doses. But then we're into Maintenance.
We can get through 16 weeks, right?
I found this, and really thought it was an appropriate time to add it. Excuse the french! =)
All along, I've said how well Matthew handles the Chemo. He is really made out of some seriously hearty stuff. He still eats - not super well, but well enough. He has maintained his weight. He has not been nauseous.
We've had a prescription in the cupboard for a long time that helps with nausea, and we've only used it once before.
The Doxorubicin is going to change all of that. I am thankful that it's only for 8 weeks. He was up sick all night long. I gave him the Zofran (anti-nausea) but he kept getting sick, and I'm pretty sure he didn't get much benefit from it. He's finally sleeping peacefully right now, and I'm sitting here pondering.
I recently posted about how we have been lucky, and so many families have it so much worse than we do. Right now, I feel like a real cancer mom. Haggard and tired, and really worried about my son.
He also started steroids again yesterday. I am preparing for food marathons, and some weight gain. I have decided a whole new cruelty of this disease is giving a child medicine that will make him ravenous with hunger, combined with a medicine that will make him throw up everything he eats. It will only fuel the beast. Last night, as I gave him his first dose of steroids, I wanted to cry. I hate doing this to my baby boy. Steroids are so awful. He'll take them for 7 days, then have a 7 day break, then take them for another 7 days. They call that a pulse.
He understands better than I expected, though. Yesterday, at the clinic, he was playing with the child-life specialist, and he started drawing pictures for her on the whiteboard. It was a blob-body, and he drew cancer inside of it. Then marker-medicine went in the blob's mouth, and down its throat, and scribbled out the cancer. But then another cancer came, and he had to do it again. And again. And again. It was so cute, and it amazes me how wise he is. But it's sad to me that my 4 year old has to be that wise.
The bright side is that this is the big guns. This is what's going to save my baby. And it's only for 8 weeks. Then 8 more weeks of Interim Maintenance II, a mirror image of the phase we just got out of, albeit with increased doses. But then we're into Maintenance.
We can get through 16 weeks, right?
I found this, and really thought it was an appropriate time to add it. Excuse the french! =)
Monday, November 14, 2011
Still Not Ready
We still feel like we're not ready for the next 8 weeks. Matthew starts Delayed Intensification tomorrow. That's round 4 of 6 in his Chemo road map. Delayed Intensification is the scary one. Matthew will soon lose all of his hair again. (I know - it's the one thing that doesn't hurt - but it always outwardly shows how intense things are) This time, he'll lose it all, too. Last time, before the hair managed to fall all the way out, there was peach-fuzz underneath in its place. He never even lost all of the original hair. He kept all of his body hair, and things like eyebrows and eye lashes. This time, that will all go. He will be bald as a cue ball. His counts will be low during the holidays, and it will be surprising if he makes it through this next 8 weeks without a delay or hospitalization. So far, he hasn't been delayed, so I hope that doesn't happen, but if it ever will, it's now.
Having these last two weeks off has been wonderful. He feels great, and we can really see a difference. We even left him with someone else for an evening! My sweet Sister-in-law, Andrea, offered to have him come and play with his cousins to give us a night off. He was so excited! These days, he runs around in just undies most of the time. (What can I say? I pick my battles) When he heard me talking about having him go to Andrea's, he went and found shoes, and put them on without socks, then in just shoes and undies, said he was ready to go. He's such a funny kid! He had a great time, though, and I really felt how just a couple of weeks without Chemo makes such a big difference. I hope he will feel more like this when we finally hit Maintenance. If not, I have to wonder how on Earth he's going to handle Kindergarten.
Anyway, it has been an enjoyable couple of weeks. His last Chemo treatment was on Halloween. Granted, he still had to go to the doctors for his kidneys, but those are like regular doctors appointments. You go in, you wait for a long time, you see the doctor for a couple of minutes, you chat about his progress, and then you go home. Not like a home away from home, which is what the clinic is like.
I have a love-hate relationship with the clinic. They are wonderful people, really. All of them. They take such great care of these kids who are suffering so much, and they look out for the entire family. You really get to know and love them. I can't imagine how I would have gotten through all of this if they were as busy and businesslike as most doctors offices are. These people work hard to make sure you're comfortable there - and it really shows! And if they didn't, things would be a LOT harder.
BUT, I hate the clinic for reasons that are probably obvious, but I'll state them anyway. It takes SO much time! Sometimes as many as 8 hours. Plus - you know - there's that whole poisoning my child thing. And he has to be examined by at least 2 doctors every time, which he hates. And it's drama to access his port, every time. He still hasn't gotten used to that.
One thing's for sure. It doesn't matter if we're ready or not. Clinic is tomorrow, and we start Chemo again. Friday he'll get the Doxorubicin, which is the big guns. This is one of those times I have to remind myself that it's better than the alternative.
Doxorubicin will kill the ugly cancer monster. There's another love-hate relationship for you.
Having these last two weeks off has been wonderful. He feels great, and we can really see a difference. We even left him with someone else for an evening! My sweet Sister-in-law, Andrea, offered to have him come and play with his cousins to give us a night off. He was so excited! These days, he runs around in just undies most of the time. (What can I say? I pick my battles) When he heard me talking about having him go to Andrea's, he went and found shoes, and put them on without socks, then in just shoes and undies, said he was ready to go. He's such a funny kid! He had a great time, though, and I really felt how just a couple of weeks without Chemo makes such a big difference. I hope he will feel more like this when we finally hit Maintenance. If not, I have to wonder how on Earth he's going to handle Kindergarten.
Anyway, it has been an enjoyable couple of weeks. His last Chemo treatment was on Halloween. Granted, he still had to go to the doctors for his kidneys, but those are like regular doctors appointments. You go in, you wait for a long time, you see the doctor for a couple of minutes, you chat about his progress, and then you go home. Not like a home away from home, which is what the clinic is like.
I have a love-hate relationship with the clinic. They are wonderful people, really. All of them. They take such great care of these kids who are suffering so much, and they look out for the entire family. You really get to know and love them. I can't imagine how I would have gotten through all of this if they were as busy and businesslike as most doctors offices are. These people work hard to make sure you're comfortable there - and it really shows! And if they didn't, things would be a LOT harder.
BUT, I hate the clinic for reasons that are probably obvious, but I'll state them anyway. It takes SO much time! Sometimes as many as 8 hours. Plus - you know - there's that whole poisoning my child thing. And he has to be examined by at least 2 doctors every time, which he hates. And it's drama to access his port, every time. He still hasn't gotten used to that.
One thing's for sure. It doesn't matter if we're ready or not. Clinic is tomorrow, and we start Chemo again. Friday he'll get the Doxorubicin, which is the big guns. This is one of those times I have to remind myself that it's better than the alternative.
Doxorubicin will kill the ugly cancer monster. There's another love-hate relationship for you.
Thursday, November 10, 2011
Bye-Bye Kidney Stones
Short update today. I just wanted to let everyone know that Matthew had an ultra sound yesterday (more than 6 weeks after the discovery of his kidney stone) and it came up clear. Apparently Matthew got rid of it quietly and on his own. I'm sure he would have mentioned it if there was pain, so I'm very relieved to know it's over with. When we went into the outpatient clinic yesterday, I really thought they were going to tell us he needed surgery to get it out.
Way to kick cancer's butt, one little bit at a time, Matthew!
Also, I thought I'd share this interesting development. Matthew is beginning to participate in the battle against cancer, in his own little 4 year old way. First off, we told him he needed to drink lots of water to get the kidney stone out (he calls it a rock). But he mixed up the "rock" with cancer. I'm not sure he understands the difference between the two. Or maybe his intuition, like mine, tells him that they are related. Anyway, whenever he drinks water, he now tells us that he's getting the cancer out of him. Smart little stinker!
Also, he draws pictures almost every day of cancer, and something or another is always beating it. Today's picture was a machine that is pushing out of little holes that will get it out. My favorite, though, was the first one he ever did. It was a "stinky breath getting the cancer out."
I thought I'd share that adorable, yet sad, little piece of his imagination.
Also, I thought I'd share these links. This event looks like it was amazing, and I found it super uplifting this morning. My friend's cousins banded together and shaved their heads in honor of her 4 year old son, who has Leukemia.
This is the mom's blog, and this is one of the cousins' blogs.
Way to kick cancer's butt, one little bit at a time, Matthew!
Also, I thought I'd share this interesting development. Matthew is beginning to participate in the battle against cancer, in his own little 4 year old way. First off, we told him he needed to drink lots of water to get the kidney stone out (he calls it a rock). But he mixed up the "rock" with cancer. I'm not sure he understands the difference between the two. Or maybe his intuition, like mine, tells him that they are related. Anyway, whenever he drinks water, he now tells us that he's getting the cancer out of him. Smart little stinker!
Also, he draws pictures almost every day of cancer, and something or another is always beating it. Today's picture was a machine that is pushing out of little holes that will get it out. My favorite, though, was the first one he ever did. It was a "stinky breath getting the cancer out."
I thought I'd share that adorable, yet sad, little piece of his imagination.
Also, I thought I'd share these links. This event looks like it was amazing, and I found it super uplifting this morning. My friend's cousins banded together and shaved their heads in honor of her 4 year old son, who has Leukemia.
This is the mom's blog, and this is one of the cousins' blogs.
Tuesday, November 8, 2011
Can you believe I just called myself lucky?
Matthew is feeling great today. The break from the Chemo this last week has been really good for him. He seems stronger and happier. There are lots of giggles. He's eating well, and I can tell. I swear his little body feels bigger and more solid to me every time I hug him, which is about 9,000 times a day. We have another blessed week off before he starts Delayed Intensification. The winter will be rough for him because DI is when he will receive his harshest chemo treatments, but I'm glad he has this nice break beforehand.
Here's what's been on my mind lately:
It's interesting how something bad can happen to you, and then it changes your view of what's really bad.
Don't get me wrong. Matthew's cancer is really bad. It's definitely a burden on us. I usually try and keep the blog as positive as possible for a lot of reasons, including not burdening the rest of the world, not being a complainer, keeping a record of this that Matthew can look back on when he's older. That hasn't been hard, either, because a crisis like this really reveals to you some of the best things that mankind has to offer. The true meaning of charity, grace, service. How deeply small acts of kindness can touch somebody's life. The fierceness of protecting your child at all costs. Steven V. Thulon said, "Conflict builds character, while crisis defines it." It's true. It brings out your true colors. My family is stronger, my children more empathetic and caring, my faith cemented. Those are the good things, which I always try to share. What can I say? I've always been a glass half full kind of girl.
But some simple truths are that I've been fighting off some hearty depression because of it. It's a constant thing for me, and I've had to really focus on ways to keep my mental health in good shape, because we're just barely getting started, and I wasn't prepared for a marathon. Matthew's having some behavior issues, too, because of the isolation. Thank heavens he gets so much individual attention, because when he's at the other end of this dark tunnel, I want him to be a good person with healthy relationships and habits so that he can lead a long, happy life, and be a productive member of society. We probably won't get to spend much time with family this coming holiday season, which is really sad to me, because right now we need the support of family more than ever. Also, so many of the things that used to be important just aren't anymore. Cancer is that all-consuming.
Anyway, back to my original point: Of all the childhood cancers, his type and subtype combined with his age group has the best prognosis possible. He will most likely beat this. Those words are very comforting to me. Statistically, he has VERY good odds. Maybe as high as a 95% chance at the end of his protocol (the 3 years, 3 months of his treatment). Plus, if he's one of the 5% that isn't cured then, there are still even more options. Harsher treatments, but still more chances of saving his life. I honestly haven't ever feared for his life. Not for one day of this battle.
I've met a lot of families who aren't so lucky. (See? Can you believe I just called myself lucky?) I see stories every day of kids who aren't going to make it - or didn't make it. Or families who have to move to Memphis so that their child can be treated at St. Jude's or have had to move here to Utah so their child can be treated at Primary's. They seriously have to drop their jobs, hope they can sell their home, and leave their lives behind. Can you imagine? I've seen kids who have to live at the hospital for months at a time, or lose their sight, hearing, or ability to walk. Kids who lose their spleen or gallbladder. I know a girl whose growth is stunted forever. She's 9 and wears size 3T clothing. The list goes on and on.
I'm a huge fan of another blogger, Mary Tyler Mom. She lost her 4 year old daughter, Donna, to cancer in 2009, after 31 months of treatment. This year in September, for Childhood Cancer Awareness Month, she wrote a post every day about each month of Donna's treatment. The idea was to raise awareness of what the family of a childhood cancer patient goes through. It was beautifully written, and wildly honest. It had a profound affect on me. One of the things she said that really touched the heart of what I'm trying to get to here was this: "You know your kid is sick when you're jealous of another kid's cancer." That was in this post.
In the beginning of all of this, I would look at these families who had it so much worse than us, and I would cry for them, and mourn for them. And I would feel guilty that I was so depressed about Matthew's cancer. After all, they would probably give anything to be in our situation instead of their own. I should be grateful. Believe me, I am. I am grateful for his prognosis, for the research that has gone into his particular type of Leukemia. For all the people who sacrificed extra blood and bone marrow before him so that the treatments would improve and he could live, even though they might not have. And I am mindful that it could be worse. Whenever I struggle with some crappy thing about his treatment, I remind myself that it's better than the alternative. That's a cold, hard truth. And I know that we are lucky.
But I realized not too long ago that I had to give myself permission to be sad about it. If not, it would eat me alive. Just acknowledging to myself that it really sucks made such a big difference for me. I had to allow myself to mourn the loss of our way of life. To mourn the loss of Matthew's innocence. To mourn about sharing the last few years when my whole family will live under the same roof with this ugly beast. (Alaina will be almost 20 when his treatment is done, and will likely be gone to college. I wanted to have so many vacations and fun outings during these next few years!)
Suffering has such a broad spectrum. Friends or family will have something happen, like asthma or an injury or diabetes, and they always say, "It's not as bad as what you're going through." And I honestly feel that their thing doesn't suck any less just because of what I'm going through, and I can in fact empathize better than I used to, even with small medical issues. Especially when it affects a child.
Likewise, I honestly believe that the families who are going through all those cancer horror stories I mentioned (or others I don't know of or fully understand) don't think I'm silly for being upset about Matthew's cancer. I don't believe for a minute that any of them would begrudge me his good prognosis. How would that improve their situation at all? The truth is that cancer freaking sucks! In all its forms.
So do Asthma, Diabetes, Arthritis, Tendonitis, Sprained Ankles, and any other malady. It's hard when you're unhealthy, and it's even harder when your children are, despite your best efforts.
To anyone reading this: Please don't feel hesitant to talk to me about your problems, or your children's health problems. It will only serve to make me feel more isolated. I thrive on friendships and social connections. Please don't feel like you can't confide in me - or ask my advice! - when your child is having health problems just because they aren't as bad as cancer. And please, please, please don't let what we're going through make you feel guilty because you're sad about something you're going through.
I refuse to let this make me a bitter person. I will not be that petty old lady who compares all of your problems with my own just to show that mine are worse. It's apples and oranges. I still have 3 other kids who go through regular stuff, and I get that even with cancer in the family, it sucks when you're 13 and your best friend ditches you for a boyfriend.
We must go on with life. All of us. The Burr family will catch up. We already are, slowly but surely. It seems like every day another little piece of the puzzle falls back into place. Our broken hearts are mending, and we are being redefined, and we WILL prevail!
Here's what's been on my mind lately:
It's interesting how something bad can happen to you, and then it changes your view of what's really bad.
Don't get me wrong. Matthew's cancer is really bad. It's definitely a burden on us. I usually try and keep the blog as positive as possible for a lot of reasons, including not burdening the rest of the world, not being a complainer, keeping a record of this that Matthew can look back on when he's older. That hasn't been hard, either, because a crisis like this really reveals to you some of the best things that mankind has to offer. The true meaning of charity, grace, service. How deeply small acts of kindness can touch somebody's life. The fierceness of protecting your child at all costs. Steven V. Thulon said, "Conflict builds character, while crisis defines it." It's true. It brings out your true colors. My family is stronger, my children more empathetic and caring, my faith cemented. Those are the good things, which I always try to share. What can I say? I've always been a glass half full kind of girl.
But some simple truths are that I've been fighting off some hearty depression because of it. It's a constant thing for me, and I've had to really focus on ways to keep my mental health in good shape, because we're just barely getting started, and I wasn't prepared for a marathon. Matthew's having some behavior issues, too, because of the isolation. Thank heavens he gets so much individual attention, because when he's at the other end of this dark tunnel, I want him to be a good person with healthy relationships and habits so that he can lead a long, happy life, and be a productive member of society. We probably won't get to spend much time with family this coming holiday season, which is really sad to me, because right now we need the support of family more than ever. Also, so many of the things that used to be important just aren't anymore. Cancer is that all-consuming.
Anyway, back to my original point: Of all the childhood cancers, his type and subtype combined with his age group has the best prognosis possible. He will most likely beat this. Those words are very comforting to me. Statistically, he has VERY good odds. Maybe as high as a 95% chance at the end of his protocol (the 3 years, 3 months of his treatment). Plus, if he's one of the 5% that isn't cured then, there are still even more options. Harsher treatments, but still more chances of saving his life. I honestly haven't ever feared for his life. Not for one day of this battle.
I've met a lot of families who aren't so lucky. (See? Can you believe I just called myself lucky?) I see stories every day of kids who aren't going to make it - or didn't make it. Or families who have to move to Memphis so that their child can be treated at St. Jude's or have had to move here to Utah so their child can be treated at Primary's. They seriously have to drop their jobs, hope they can sell their home, and leave their lives behind. Can you imagine? I've seen kids who have to live at the hospital for months at a time, or lose their sight, hearing, or ability to walk. Kids who lose their spleen or gallbladder. I know a girl whose growth is stunted forever. She's 9 and wears size 3T clothing. The list goes on and on.
I'm a huge fan of another blogger, Mary Tyler Mom. She lost her 4 year old daughter, Donna, to cancer in 2009, after 31 months of treatment. This year in September, for Childhood Cancer Awareness Month, she wrote a post every day about each month of Donna's treatment. The idea was to raise awareness of what the family of a childhood cancer patient goes through. It was beautifully written, and wildly honest. It had a profound affect on me. One of the things she said that really touched the heart of what I'm trying to get to here was this: "You know your kid is sick when you're jealous of another kid's cancer." That was in this post.
In the beginning of all of this, I would look at these families who had it so much worse than us, and I would cry for them, and mourn for them. And I would feel guilty that I was so depressed about Matthew's cancer. After all, they would probably give anything to be in our situation instead of their own. I should be grateful. Believe me, I am. I am grateful for his prognosis, for the research that has gone into his particular type of Leukemia. For all the people who sacrificed extra blood and bone marrow before him so that the treatments would improve and he could live, even though they might not have. And I am mindful that it could be worse. Whenever I struggle with some crappy thing about his treatment, I remind myself that it's better than the alternative. That's a cold, hard truth. And I know that we are lucky.
But I realized not too long ago that I had to give myself permission to be sad about it. If not, it would eat me alive. Just acknowledging to myself that it really sucks made such a big difference for me. I had to allow myself to mourn the loss of our way of life. To mourn the loss of Matthew's innocence. To mourn about sharing the last few years when my whole family will live under the same roof with this ugly beast. (Alaina will be almost 20 when his treatment is done, and will likely be gone to college. I wanted to have so many vacations and fun outings during these next few years!)
Suffering has such a broad spectrum. Friends or family will have something happen, like asthma or an injury or diabetes, and they always say, "It's not as bad as what you're going through." And I honestly feel that their thing doesn't suck any less just because of what I'm going through, and I can in fact empathize better than I used to, even with small medical issues. Especially when it affects a child.
Likewise, I honestly believe that the families who are going through all those cancer horror stories I mentioned (or others I don't know of or fully understand) don't think I'm silly for being upset about Matthew's cancer. I don't believe for a minute that any of them would begrudge me his good prognosis. How would that improve their situation at all? The truth is that cancer freaking sucks! In all its forms.
So do Asthma, Diabetes, Arthritis, Tendonitis, Sprained Ankles, and any other malady. It's hard when you're unhealthy, and it's even harder when your children are, despite your best efforts.
To anyone reading this: Please don't feel hesitant to talk to me about your problems, or your children's health problems. It will only serve to make me feel more isolated. I thrive on friendships and social connections. Please don't feel like you can't confide in me - or ask my advice! - when your child is having health problems just because they aren't as bad as cancer. And please, please, please don't let what we're going through make you feel guilty because you're sad about something you're going through.
I refuse to let this make me a bitter person. I will not be that petty old lady who compares all of your problems with my own just to show that mine are worse. It's apples and oranges. I still have 3 other kids who go through regular stuff, and I get that even with cancer in the family, it sucks when you're 13 and your best friend ditches you for a boyfriend.
We must go on with life. All of us. The Burr family will catch up. We already are, slowly but surely. It seems like every day another little piece of the puzzle falls back into place. Our broken hearts are mending, and we are being redefined, and we WILL prevail!
Tuesday, November 1, 2011
Another Round Bites the Dust
Well, yesterday was Matthew's last treatment on Interim Maintenance I. So, we're done with 3 rounds, and have 3 more to go. Please don't mistake that for halfway, though, because it feels like Maintenance will last FOREVER! But, at least when we get to Maintenance, he'll only have to go in once a month, and most of his Chemo will come in the form of pills. Providing, of course, that everything goes smoothly for 2.5 years.
He's still technically in IM I, but they build breaks into it. He's supposed to have a 16 day break, but his doctors are there on Tuesdays, so in order to sync back up with their schedule, we'll go in a day early to start the next phase.
The next phase is Delayed Intensification. If it sounds scary, that's because it is. I'm really not looking forward to it. It will probably be as bad as Induction was. Induction was the first month, when he wouldn't get up off the couch, and he gained 30% extra body weight. They're adding a new Chemo called Doxorubicin, which is the big guns. He's going to lose his hair again, and this time, it'll be every last hair - eyelashes, back hair (he's a little monkey), eyebrows - the whole shebang. He'll be a little Q-ball by Christmas.
He also has to go back on the dreaded steroids, which I recently found out was very possibly the cause of the kidney stone. I talked to his doctor about that yesterday, and she put it in perspective for me in a very real way. I really love how she doesn't sugar coat things. Honestly, I do. It can be hard to swallow sometimes, but she keeps it real, and that's important, because I'm never under any illusions. Anyway, she told me that the steroids add to his chances of a cure. If we didn't do them, it would decrease his chances of survival. A kidney stone is an acceptable side effect, because it isn't life threatening. Wow. It brings home how bad cancer freaking sucks. I'm going into this next month knowing that I'm going to give my baby the poison that caused him all that pain. And I really - really - don't want to. But (deep breath) it's better than the alternative. It is SO hard that I have to choose between causing him pain like that or risking his life. I'm sick with worry over it. But, it has to be done, so we'll just plod forward and get through it.
I'm sure I've mentioned it before, but I'm a member of an amazing group of women on Facebook, that have formed a support group. We all have kids who are being treated for cancer of one kind or another at Primary's. We're spread out all over the state, and there are a few who are in Idaho and Nevada. We have shared all of each other's ups and downs, and it keeps us very close. I have two particularly close friends whose kids are just ahead of Matthew in treatment. Both are in Delayed Intensification right now. I'm watching what these kids are going through, and I'm worried about them. I'm worried about their moms and dads. And I'm worried about Matthew over the next few months.
One of the cuties I mentioned has had chronically low counts, and has had to be hospitalized for fevers a couple of times. His mom smiles through it all, and I am amazed by her every day. The other has had decent counts, but just had surgery for a kidney stone. Her mom also keeps an amazing attitude about it all. I am humbled by these women. I have to really work not to be bitter when Matthew is going through the trenches. I hope they know what an example they both are to me.
I'll ask again, if you are one who prays, please keep Matthew in your prayers in the coming months. Tyson and Lanee, too. If you are not, please keep them in your thoughts. I know for us, it carries us through, so thank you.
He's still technically in IM I, but they build breaks into it. He's supposed to have a 16 day break, but his doctors are there on Tuesdays, so in order to sync back up with their schedule, we'll go in a day early to start the next phase.
The next phase is Delayed Intensification. If it sounds scary, that's because it is. I'm really not looking forward to it. It will probably be as bad as Induction was. Induction was the first month, when he wouldn't get up off the couch, and he gained 30% extra body weight. They're adding a new Chemo called Doxorubicin, which is the big guns. He's going to lose his hair again, and this time, it'll be every last hair - eyelashes, back hair (he's a little monkey), eyebrows - the whole shebang. He'll be a little Q-ball by Christmas.
He also has to go back on the dreaded steroids, which I recently found out was very possibly the cause of the kidney stone. I talked to his doctor about that yesterday, and she put it in perspective for me in a very real way. I really love how she doesn't sugar coat things. Honestly, I do. It can be hard to swallow sometimes, but she keeps it real, and that's important, because I'm never under any illusions. Anyway, she told me that the steroids add to his chances of a cure. If we didn't do them, it would decrease his chances of survival. A kidney stone is an acceptable side effect, because it isn't life threatening. Wow. It brings home how bad cancer freaking sucks. I'm going into this next month knowing that I'm going to give my baby the poison that caused him all that pain. And I really - really - don't want to. But (deep breath) it's better than the alternative. It is SO hard that I have to choose between causing him pain like that or risking his life. I'm sick with worry over it. But, it has to be done, so we'll just plod forward and get through it.
I'm sure I've mentioned it before, but I'm a member of an amazing group of women on Facebook, that have formed a support group. We all have kids who are being treated for cancer of one kind or another at Primary's. We're spread out all over the state, and there are a few who are in Idaho and Nevada. We have shared all of each other's ups and downs, and it keeps us very close. I have two particularly close friends whose kids are just ahead of Matthew in treatment. Both are in Delayed Intensification right now. I'm watching what these kids are going through, and I'm worried about them. I'm worried about their moms and dads. And I'm worried about Matthew over the next few months.
One of the cuties I mentioned has had chronically low counts, and has had to be hospitalized for fevers a couple of times. His mom smiles through it all, and I am amazed by her every day. The other has had decent counts, but just had surgery for a kidney stone. Her mom also keeps an amazing attitude about it all. I am humbled by these women. I have to really work not to be bitter when Matthew is going through the trenches. I hope they know what an example they both are to me.
I'll ask again, if you are one who prays, please keep Matthew in your prayers in the coming months. Tyson and Lanee, too. If you are not, please keep them in your thoughts. I know for us, it carries us through, so thank you.
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