Yep!! You read that right! We got to go on our first family vacation that did NOT involve St. Jude in any way. This was a major milestone for us. Last year, I remember Jack got to tell about what he did on Spring break, and he got to tell his class members how he spent his vacation at St. Jude. Now we did take the kids to the Memphis zoo, but sitting in a hospital room all day while your sister is getting high dose methotrexate over a 24 hour period isn't much of a vacation. This time, we had absolutely nothing to do with cancer what so ever! And it was wonderful and amazing.
First let me explain a couple of things about having a child with cancer. It is very different if you had cancer as an adult. Not worse, not better, just different. A child cannot tell us when he/she thinks she is coming down with the flu, or a cold because they have yet to understand those symptoms. As a mother of a cancer child, every time Lucy does complain about something my mind goes to one place: the cancer is back. But in reality, it could be a side effect of chemo, it could be the flu, or it could be something entirely different that we have not dealt with yet. The other part that is different is the type of cancer. Leukemia is a cancer of the blood and essentially the immune system. Since it lives in the bone marrow where all fighter cells are produced, the goal during treatment is to keep their immune systems low (have to kill the good cells with the bad), but not too low that they become neutropenic and could have complications from a fever where they could literally die. So its a balancing act. And as a Parent of a child with cancer, I don't always know when Lucy has "good" numbers or not. And mind you good to us is not anything in normal range. So its my job to protect her from getting anything fungal or bacterial, which often means avoiding crowds, skipping out on family get togethers and sometimes just laying low at home. And the rest of the time when we decide to let her do something regardless of the numbers, we are taking a risk. We have to balance her life though. Protect her while also letting her be a 4 year old. It is not an easy task. And unlike other cancers, leukemia has a LONG treatment plan. 3 years is pretty damn long to worry about these things day in and day out.
So we were referred to an organization in Missouri that gives families who have a child with cancer, the chance to have a mini vacation to "get away from reality" for a few days. http://www.uoftrl.com/ Check them out and their founder Don who himself is a 2 time cancer survivor. So we picked our days when we wanted to go and got a confirmation, and then we held our breath. We knew if Lucy's numbers weren't high enough, we would not be able to go. So we kept her home and away from everything. We told very few people about the vacation (didn't want to jinx it). We waited...we waited until the Wednesday of clinic day which was the day before we were suppose to leave for the trip. And that entire clinic visit, we were on pins and needles waiting for Lucy's numbers to come back. Finally Dr. Al said her ANC looked good enough to go and to enjoy ourselves. I must also mention, the place we went was literally an hour away from a St. Jude clinic, which is the other reason we got the ok to go from the doctor. Of course, no swimming, wear a mask as much as possible, but other than that do nothing but have fun.....which is exactly what we did......to be continued
Monday, May 28, 2012
Monday, May 7, 2012
Back in the old days...
Today has been an epic day of withdraw from dexamonster. She has proven that it truly takes two of us to take care of her during these pulses. Of course, one of us could, but we would probably be drunk by noon or would have taken too much prescription medication to do anything but sit in a chair and stare at a blank wall. Anyhow, day started out with her yelling me. Why? Because I cooked all the sausage and let her eat it all yesterday. She said "you promised to buy italian sausage, and I don't see any. and I ate the sausage patties yesterday that you cooked, why would you let me eat all that sausage yesterday". So, I say in my calm, not yet had a cup of coffee voice: you may have cereal, oatmeal, poptarts, or mini muffins for breakfast. She asks "what else do we have?" She then proceeds to open the refrigerator, slam the door. Open the freezer, slam the door. Open the food pantry....yep you guessed it...slam the door. She slammed every cabinet door she could read that had food in it. Then stomped off to her room and slammed her bedroom door, all while yelling "we have no food in this house". I just spent $400 at the store Saturday. fml
I then go ahead and have a cup of coffee. Lucy comes out and tells me she forgot to tell me she peed all over her bed. So I clean her up and change her, and she decides she is ready for breakfast. 2 bananas. Good we got that over with. Then she goes in the play room while I sit at the table and eat my breakfast, and she starts some fights with Jack. She goes over and pinches him. I ask why she would do that. She says "he was making me angry and looking at me". Then she smells my breath (I kid you not), and says why do you smell like yogurt? I said "because I just drank some". "eww, why would you do something so stupid like drink yogurt". At this point, I do not make eye contact....
Jack gets sent off to school, daddy and mommy sit down on their laptops, and Lucy has nothing or no one to bother, so she starts in over the food again. She says she's hungry and wants an orange cut up like the cafeteria does. oh , boy...this is a tall order to fill. Now how does the cafeteria cut their oranges? In slices of course, easy enough...right? OMG--NO!! I didn't slice them thin enough, so I had to go back and do them again. Then while I was hiding out from Lucy, she made daddy make her hot cocoa. 15 minutes later, things are calm...she's watching TV...only ate 1/2 the orange slices and drank 1/4 of the hot cocoa. She comes in demanding more food. We tell her she can't have any because she has wasted what we gave her...fit proceeds. Oh, and I forgot to mention, she somehow got daddy to make toast with nutella while I wasn't looking. I think he made eye contact. Silly man.
So, I start to make lunch, and guess who is at my feet the entire time? yep! I made chicken tacos. She ate a lot of those...and then insisted on dessert. THEN...she opens the freezer and said "guess what I just found...MORE sausage patties, this is what I want for breakfast tomorrow".
During lunch, daddy was putting new sheets on her bed and moved her pillow and he found 4 dehydrated carrots under there. hahahaha God only knows how long she had those hidden there.
After lunch, Lucy watched some TV, and we got yelled at...again. This time because we wouldn't "Past forward the commercials". So we did have a nice conversation about how when we were little, we didn't have TIVO, and that we had to (gasp) actually get up to turn the channel and watch the commercials. She said "wow, back in the old days, you didn't have none of this stuff". I said "how old are you talking?, how old do you think we are?". She said "well, you probably didn't have houses and stuff either, right?". We laughed and told her we had houses, just didn't have computers or iphones, or leapster explorers. She was mortified. And we were happy to be off the subject of food. If only for a few moments...
I then go ahead and have a cup of coffee. Lucy comes out and tells me she forgot to tell me she peed all over her bed. So I clean her up and change her, and she decides she is ready for breakfast. 2 bananas. Good we got that over with. Then she goes in the play room while I sit at the table and eat my breakfast, and she starts some fights with Jack. She goes over and pinches him. I ask why she would do that. She says "he was making me angry and looking at me". Then she smells my breath (I kid you not), and says why do you smell like yogurt? I said "because I just drank some". "eww, why would you do something so stupid like drink yogurt". At this point, I do not make eye contact....
Jack gets sent off to school, daddy and mommy sit down on their laptops, and Lucy has nothing or no one to bother, so she starts in over the food again. She says she's hungry and wants an orange cut up like the cafeteria does. oh , boy...this is a tall order to fill. Now how does the cafeteria cut their oranges? In slices of course, easy enough...right? OMG--NO!! I didn't slice them thin enough, so I had to go back and do them again. Then while I was hiding out from Lucy, she made daddy make her hot cocoa. 15 minutes later, things are calm...she's watching TV...only ate 1/2 the orange slices and drank 1/4 of the hot cocoa. She comes in demanding more food. We tell her she can't have any because she has wasted what we gave her...fit proceeds. Oh, and I forgot to mention, she somehow got daddy to make toast with nutella while I wasn't looking. I think he made eye contact. Silly man.
So, I start to make lunch, and guess who is at my feet the entire time? yep! I made chicken tacos. She ate a lot of those...and then insisted on dessert. THEN...she opens the freezer and said "guess what I just found...MORE sausage patties, this is what I want for breakfast tomorrow".
During lunch, daddy was putting new sheets on her bed and moved her pillow and he found 4 dehydrated carrots under there. hahahaha God only knows how long she had those hidden there.
After lunch, Lucy watched some TV, and we got yelled at...again. This time because we wouldn't "Past forward the commercials". So we did have a nice conversation about how when we were little, we didn't have TIVO, and that we had to (gasp) actually get up to turn the channel and watch the commercials. She said "wow, back in the old days, you didn't have none of this stuff". I said "how old are you talking?, how old do you think we are?". She said "well, you probably didn't have houses and stuff either, right?". We laughed and told her we had houses, just didn't have computers or iphones, or leapster explorers. She was mortified. And we were happy to be off the subject of food. If only for a few moments...
Sunday, May 6, 2012
FYI--Shit Lucy says and Does....
Ok Ok Ok.....I have been getting hassled so much about setting a date to get a book done and just do it already. I have two different ones I have been working on. One that is just our story, and another that is "Life According to Lucy". That one will be done much quicker, its all her Lucyisms and antics. I have an ebook place to publish it and a hard copy way to publish it. I thought I should do that one and all the sales will go towards the marathon I signed up to do for St. Jude in December. So.....that means I need to get it done, printed and start selling it!! I just hate doing it early because there is so much more to go in there. Life according to Lucy is really quite hilarious and fun! It's kind of like Shit my Dad says....Shit Lucy says...and Does.... hahahaha. PS Look up Shit my Dad says If you have never read that...you need to. That man is by far the most hilarious thing I have ever read. Zach and I just read it and cry from laughing. So with that said I am going to give myself a hard date. Details soon.
Thursday, May 3, 2012
dexa-monster-zone
Yep....we are on dex...again....so the Lucy monster is bound to come out several times....again... It seems as if we JUST got off dex! And we are still trying to figure out why, but every time Lucy is on dex, Jack insists on terrorizing her more. Even after we remind him. It's like he wants to see how far he can push her before she will attack him, and trust me, its not much. And she WILL attack with claws out, and like T-rex, she will eat him alive. LOL It's quite amazing to see a 4 year old in attack mode. Heck, I'm afraid of her at times. We have seen a pattern with the dex/vincristine pulses. She comes home day 1 and day 2, and is ornery and can have mood disorder these two days. Her appetite starts to increase, but it is usually for one or two particular foods, and they are almost ALWAYS salty foods. This pulse is sausage. or Sausage gravy, or sausage and egg biscuits...lol anything sausage. Then by day 3, the vincristine seems to overtake the dex, and she has a lot of pain. Regardless of the preventative meds we give her. She will pretty much lay on the couch from days 4--6. Yes she only takes dex for 5 days, but the pain and effects lasts at least until day 10. Which is why the dex pulses seem so close together. And she doesn't sleep well on dex. Its like a light sleep. If you were to walk into her room, she would immediately sit up and ask what you were doing, even if she had been asleep for hours. So she is always tired during this period. We don't make her wear her leg braces because its too painful. And she gets lots of warm baths, those seem to help. And I think I may have mentioned before, but she also has different personalities that come out during this time. Our newest one: Mary, has been around a lot. Mary is sweet and kind and very motherly. We like Mary.
So, not only do we have dex for the next 4 days, we also still have life to live. Tonight Jack has his school concert, which he has informed us, he will be hiding somewhere all day so he doesn't have to go. LOL He's so much like Zach, he hates being in public, unlike Lucy and mommy. We have decided to have Lucy go to my mom's tonight so we don't have an unpredictable monster on our hands during Jack's performance. I feel bad for the kid already, he has to wear gray and is a donkey. If I didn't think it was a life lesson in that sometimes we have to do things we don't like, I wouldn't make him go. Zach and I are still debating that one. We both feel the same way. The kid HATES standing up in public, and doesn't enjoy singing, so we both almost want to tell him he doesn't have to go, but then what kind of message is that sending? Saying "ok, son, if you don't want to, you don't have to". When we all know we have things to do in life that we hate. On the other hand, we asked how important of an event is this? And would it really be sending that message? We make him clean his room, do his homework, etc etc and he says he doesn't like those things, and we say "tough", these are things you have to do your entire life, so learn now to just get them done. Its not like he will have to go and sing in front of people his entire life. I kind of feel like this is like the speech classes they make you take in college, or at least they used to, not sure if they still do. They were mandatory. And I would see some people really sweat through them and have anxiety attacks, and no matter how many speeches you made them do, they still never become comfortable with it. Same with work, they make people get up and speak because "its good for their development". I say bullshit. I say those who don't like that type of thing will find jobs that do NOT involve giving speeches or standing in public, and that is totally fine. And there is nothing wrong with that. Everybody has their strengths, so why concentrate on making everybody do the same thing to give them "development" when it really is a waste of time, and could be time better spent actually giving them something they enjoy and making them better at that. Like I would rather sign Jack up for a science fair. He could make his project, stand at the table, but not have to get up in front of a bunch of people, but he's still talking about his work and loving it. With that said, we are going to make him go tonight. Wow! I totally went off on a rant on that, didn't I? ;) Where was I going with this? ah,..yes...we are not taking dexter with us tonight for fear of adding embarrassment to the boy's already uncomfortable experience. lol
We also get to take dexter saturday to a No'Mo'Chemo" party!! That one we will risk the embarrassment. The family knows and understands all to well about the dexamonster ;) AND...I'm sooo excited to help them celebrate their end of treatment. The Barnetts are the ones who reached out to us in the very beginning of Lucy's dx and has answered questions and been there for us from day one, so I am sooo happy and feel very privileged to be invited to the party. If you want to read Nick's amazing journey, his mom, Nichole, keeps a website "bornwithacape"
So...we have one more dex pulse in June with full dose, then we get the dose cut in July until the rest of Lucy's treatment. Not by much, but less is better than more in this situation. AND I hear different reviews. Some people say they saw no difference, others say they see a big difference. So we will let you know come week 69, which is in July ;) We are currently in week 57....almost half way through our treatment phase. wow!
Well, I know this was an all over the place blog (usually they are, aren't they), but now I must assist the ever demanding dexamonster. She's tired, hungry, in pain, and bored....lol
So, not only do we have dex for the next 4 days, we also still have life to live. Tonight Jack has his school concert, which he has informed us, he will be hiding somewhere all day so he doesn't have to go. LOL He's so much like Zach, he hates being in public, unlike Lucy and mommy. We have decided to have Lucy go to my mom's tonight so we don't have an unpredictable monster on our hands during Jack's performance. I feel bad for the kid already, he has to wear gray and is a donkey. If I didn't think it was a life lesson in that sometimes we have to do things we don't like, I wouldn't make him go. Zach and I are still debating that one. We both feel the same way. The kid HATES standing up in public, and doesn't enjoy singing, so we both almost want to tell him he doesn't have to go, but then what kind of message is that sending? Saying "ok, son, if you don't want to, you don't have to". When we all know we have things to do in life that we hate. On the other hand, we asked how important of an event is this? And would it really be sending that message? We make him clean his room, do his homework, etc etc and he says he doesn't like those things, and we say "tough", these are things you have to do your entire life, so learn now to just get them done. Its not like he will have to go and sing in front of people his entire life. I kind of feel like this is like the speech classes they make you take in college, or at least they used to, not sure if they still do. They were mandatory. And I would see some people really sweat through them and have anxiety attacks, and no matter how many speeches you made them do, they still never become comfortable with it. Same with work, they make people get up and speak because "its good for their development". I say bullshit. I say those who don't like that type of thing will find jobs that do NOT involve giving speeches or standing in public, and that is totally fine. And there is nothing wrong with that. Everybody has their strengths, so why concentrate on making everybody do the same thing to give them "development" when it really is a waste of time, and could be time better spent actually giving them something they enjoy and making them better at that. Like I would rather sign Jack up for a science fair. He could make his project, stand at the table, but not have to get up in front of a bunch of people, but he's still talking about his work and loving it. With that said, we are going to make him go tonight. Wow! I totally went off on a rant on that, didn't I? ;) Where was I going with this? ah,..yes...we are not taking dexter with us tonight for fear of adding embarrassment to the boy's already uncomfortable experience. lol
We also get to take dexter saturday to a No'Mo'Chemo" party!! That one we will risk the embarrassment. The family knows and understands all to well about the dexamonster ;) AND...I'm sooo excited to help them celebrate their end of treatment. The Barnetts are the ones who reached out to us in the very beginning of Lucy's dx and has answered questions and been there for us from day one, so I am sooo happy and feel very privileged to be invited to the party. If you want to read Nick's amazing journey, his mom, Nichole, keeps a website "bornwithacape"
So...we have one more dex pulse in June with full dose, then we get the dose cut in July until the rest of Lucy's treatment. Not by much, but less is better than more in this situation. AND I hear different reviews. Some people say they saw no difference, others say they see a big difference. So we will let you know come week 69, which is in July ;) We are currently in week 57....almost half way through our treatment phase. wow!
Well, I know this was an all over the place blog (usually they are, aren't they), but now I must assist the ever demanding dexamonster. She's tired, hungry, in pain, and bored....lol
Tuesday, May 1, 2012
First Rule of Fight Club.........
I had to go back and look through the blog to see what I had actually posted and when. I can't believe its been that long since I wrote something! I have felt the "need" to blog a lot lately, but was finding it hard to put into words what I wanted to say. I guess that's what they call writers block, and its frustrating.
We were very relieved to get the news about Lucy's spinal and the blast not being a blast at all. I think for 6 weeks and 2 days I was ready to punch somebody or throw things everyday. I didn't realize that, of course, during the 6 weeks, but hindsight told me that. I think I need to take up a hobby that involves destroying things. Zach suggested we get FOID cards and go to the shooting range to literally blow off steam. And a year ago, I would have dismissed that idea completely. I do not like guns. period. I don't want them in our house, I have no interest in teaching my children about hunting, and I do not see a need for people to possess pistols and such. I think they are dangerous and don't see why anybody needs to carry a concealed weapon on them. Now....with that said, I thought Zach's idea sounded pretty darn good. I would love to go shoot something and tear it up. I think the feeling would satisfy my need for destruction. So I think that is something we are seriously considering, but I am not sure I am ready to purchase a gun and keep it in my home with my children. I know I know...all you gun enthusiasts, Texans, and and NRA card carrying members will tell me about gun safety, and how guns don't kill people, and yada yada yada. I don't care, still do not want a gun in my home while my children are small...period. Ok, not sure how that got turned into a soap box..lolzzz My point was I think it would feel good to destroy something for once instead of having something destroy us. When we were remodeling the garage, we had a dumpster to put all the garbage in, and I recall throwing cans of soda from afar into the dumpster and watching it explode, and the feeling of satisfaction. And how I wanted to throw them harder and harder. I also remember when we were tearing down walls, I just wanted to take the hammer and pound on the wall. It was a nice "pop" as it went into the drywall, and it felt really good! I'm not sure if you have seen "Fight Club" with Brad Pitt and Edward Norton, but I think they had some validity to their de-stress methods. Now I don't want to beat the shit out of someone (ok maybe sometimes I do), but I don't want to get hurt! And I don't think I would be a very good fighter, but releasing that aggression is appealing. And it seems so much more satisfying than talking to a counselor. So..I am actually toying with the idea of getting my very first firearm.
I have also asked Zach if we could get a punching bag and put it in the back garage. I think that would be the next best thing to our own private fight club. Thus far my aggression strategy has been: blogging, running, going to my therapist, or taking a kolonopin. I'm not saying those methods haven't worked successfully, but I think my body still holds some stress even after I'm done. I need a physical release as well as a mental one. Running is ok, but its more satisfying that I am setting goals and attaining them. Maybe getting a physical release would reduce the amount of yelling that is done in this house (yes, I'm a yeller).
So I guess I move forward and apply for my FOID card, and start shopping for punching bags, thus starting Zach and I's personal fight club. The first rule of fight club: You never talk about fight club. The second rule of fight club: You never talk about fight club.........
We were very relieved to get the news about Lucy's spinal and the blast not being a blast at all. I think for 6 weeks and 2 days I was ready to punch somebody or throw things everyday. I didn't realize that, of course, during the 6 weeks, but hindsight told me that. I think I need to take up a hobby that involves destroying things. Zach suggested we get FOID cards and go to the shooting range to literally blow off steam. And a year ago, I would have dismissed that idea completely. I do not like guns. period. I don't want them in our house, I have no interest in teaching my children about hunting, and I do not see a need for people to possess pistols and such. I think they are dangerous and don't see why anybody needs to carry a concealed weapon on them. Now....with that said, I thought Zach's idea sounded pretty darn good. I would love to go shoot something and tear it up. I think the feeling would satisfy my need for destruction. So I think that is something we are seriously considering, but I am not sure I am ready to purchase a gun and keep it in my home with my children. I know I know...all you gun enthusiasts, Texans, and and NRA card carrying members will tell me about gun safety, and how guns don't kill people, and yada yada yada. I don't care, still do not want a gun in my home while my children are small...period. Ok, not sure how that got turned into a soap box..lolzzz My point was I think it would feel good to destroy something for once instead of having something destroy us. When we were remodeling the garage, we had a dumpster to put all the garbage in, and I recall throwing cans of soda from afar into the dumpster and watching it explode, and the feeling of satisfaction. And how I wanted to throw them harder and harder. I also remember when we were tearing down walls, I just wanted to take the hammer and pound on the wall. It was a nice "pop" as it went into the drywall, and it felt really good! I'm not sure if you have seen "Fight Club" with Brad Pitt and Edward Norton, but I think they had some validity to their de-stress methods. Now I don't want to beat the shit out of someone (ok maybe sometimes I do), but I don't want to get hurt! And I don't think I would be a very good fighter, but releasing that aggression is appealing. And it seems so much more satisfying than talking to a counselor. So..I am actually toying with the idea of getting my very first firearm.
I have also asked Zach if we could get a punching bag and put it in the back garage. I think that would be the next best thing to our own private fight club. Thus far my aggression strategy has been: blogging, running, going to my therapist, or taking a kolonopin. I'm not saying those methods haven't worked successfully, but I think my body still holds some stress even after I'm done. I need a physical release as well as a mental one. Running is ok, but its more satisfying that I am setting goals and attaining them. Maybe getting a physical release would reduce the amount of yelling that is done in this house (yes, I'm a yeller).
So I guess I move forward and apply for my FOID card, and start shopping for punching bags, thus starting Zach and I's personal fight club. The first rule of fight club: You never talk about fight club. The second rule of fight club: You never talk about fight club.........
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