July 28, 2011 (okay I know it’s Sept but I forgot to post this when I did it, oops)
My annual update, I do believe it’s been about a year, I never look back on past posts because frankly I like being unaware of my grammatical errors. In my mind it’s perfectly fine, if I were to look back, I may never blog again. Also here’s hoping I don’t repeat anything…
So much has happened in a year as I’m sure with most of society. I will try and recall as much as possible because as you know we live life by school year not calendar year and we are about to start a new year. Jazzy will be in high school! As she walks into the ninth grade, I am bursting at the seams with excitement for her. I look back on high school with such fond memories; I actually just celebrated my 20 year reunion in June. High school is so significant and watching her go through it will be so exciting. Now I’m no Mary Poppins, I realize my excitement might be coupled with a little Tito’s from time to time. Also, I realize that my HS experience was quite different than others, like Alonzo’s. YIKES! When I’m riding shotgun down his memory lane, there is no seatbelt big enough to strap my mind from wandering. When his friends come over and reminisce, FORGET ABOUT IT, that is one party bus I definitely don’t want baby girl to be on! Okay I think I’m upgrading myself to Grey Goose, did you hear that Jake, Fernie, Raul… when in town, GREY GOOSE! Help wipe those memories from my mind, por favor!
Speaking of a love for the ladies, Diego is growing very quickly. He is now 4 ½ years old and will start pre-k in the fall. He is definitely a momma’s boy, as he likes to affirm, “Loud and proud”. Actually, he just adores the love from any female, any age. His best friend is Sascha as he likes to state, but loves to curl up on Jazzy’s lap. And when Jazzy’s soccer teams shows up, he’s truly in Heaven. Nothing like 15 girls loving all over a young boy, this kid will definitely have serious issues. Swim lessons this summer were challenging, until I remembered he is his father’s son... We could not get his floaties off, we barely got him in the water. It took awhile to get his confidence up while in the water, let’s just say he’s “cautious”. Anyway, back to the apple doesn’t fall far from the tree; I was going out of town for a few days and needed childcare for just Diego. I decided to hire a super cute, tall blonde, which is in her second year of high school. She’s the daughter of a friend, she baby sits and has competed in swimming. JACKPOT. Apparently, they get to the pool and she says, “Hey Diego why don’t you take off your floaties?” This little Chicken Little replies, “SURE!” Swipes them off - hours later is doing cannon balls, swimming above and under the water, jumping in like super man, you name it, a regular Michael Phelps. Rock on Britney, thank you. We may need to call on you from time to time. Where was she when I was trying to potty train this knuckle head?!?
Now, the update on my little Sascha. My warrior princess. Since my last post, I believe we have been to Chicago 4 times. I won’t bore you with the specific tests; just know we have been in the “normal” range for the last two visits, since December. Very exciting news. In the last year they have taken away one steroid drug and have been weaning a couple others. Although this is exciting, it is equally very unsettling. I’m always afraid, nervous. Too many drugs are not good, but taking it away almost leaves you vulnerable. Everything just seems like a slight panic attack. After homeschooling this year I learned more about her, and myself. Homeschooling was equally rewarding as it was stressful. I dropped about 1,467 *F* bombs in my head. I learned who she was at the beginning of the week and who she would become at the end. There are many side effects to medicine, and when you see them unfold before your eyes it’s quite impressionable. After her injection on Wednesday, we took Thursday off, because it just wasn’t worth it. She couldn’t focus and was very agitated. This truly gave me another perspective on life. It will make you look at people differently. You never know what is happening in a stranger’s life. When someone cuts you off on the freeway, when they are rude at the store, bad service in a restaurant, even a co-worker having an off day; you just don’t know if it’s a birth mood issue or an altered issue. And there are many examples to remind you of this. Every story you hear is no coincidence, pay attention, it’s relatable somewhere. A couple of years ago a friend of mine was on fire about this lady who was driving her mad. She was the mother of a girl who cheered with her daughter. So she somewhat had to interact with this lady. My girlfriend had to deal with this lady’s aggressive behavior, her tantrums, and her confrontations. Long story short, out of the blue I asked about this lady a couple of months ago, I was inquiring if their relationship had mended since her daughter was on the cheer squad again. My girlfriend informs me that in September she was diagnosed with some sort of brain tumor and they buried her in December. Whoa. You just never know. We need to learn how to give others a break. I’m still working on it.
Aside from that, she is doing well, I’m not sure if you can notice from the pictures but her swelling has gone down, she has managed to lose 6 lbs since December. During our visit to Chicago at the beginning of the year her weight was a huge concern. I do admit I didn’t handle the situation very well, REALLY, how dare they, Let’s pump up your daughter with two kinds of steroids, for a year and a half, and then eliminate the SUN, eliminate areas that have high germ probability, and any jumping because of the weakness in her neck, then they question the weight gain. When she asked me to see a nutritionist, let me tell you, the Gary, Indiana roots I possess found themselves with much strength. I was about to go off… when deciding which language to do it in, I looked at my classy hubby and decided not to put him through the embarrassment. Okay maybe a little, I did have something to say but I did a la Alonzo, with a little class and a soft tone. Don’t ask him to verify this, because like the blog I played it in my head as perfectly fine. Okay, okay, let’s just change the subject all together, she lost 6 pounds and I didn’t speak to a nutritionist. :-O
Fast forward, we survived home schooling, she went back to Spanish schoolhouse for the last 6 weeks of school so she could participate in the end of the year program (and I didn’t have to put together a production a la “So you think you can dance and sing American Idol”) and have kinder graduation. She was accepted into the dual immersion program at the elementary and will start the first grade in a few weeks. YEAH BABY! I’m nervous as heck but one just has to move forward, right?
Fast forward to present day…we have our next appointment in a couple of weeks, I hope and pray it’s all good news and I will try my hardest to post before the new year. Hehe
Lots of love my friends, stay healthy.
Wednesday, September 21, 2011
Wednesday, August 25, 2010
Our second year with JDM
Okay I'm not even going to apologize anymore and come to terms with the idea that I'm just not a blogger. This second year I'm going to try and commit to once a month updates. Instead of last years approach of waiting until I had something to report. Unfortunately, it seemed like I always had something to report but just didn't have the time to report it.
This September will be our one year anniversary from the start of her treatments. This past July was the one anniversary of her diagnosis. I still can't believe it's my Sascha who is going through this. I really don't allow myself pity parties because I know that I'm not the only ticket holder for the roller coaster from hell. Man, life is nuts. If you are a member of FB you know that reading little bits of every body's life is comical. I don't get on it often but when I do, I always laugh to see what people put. "Love the martini yesterday-thx ?, got my nails done, pray for me too ..., I hate men, my kids suck, etc" It's funny that men never post negative info about their wives, or at least I haven't seen any. I'm sure they know we will find out and truly have the power to make their lives miserable without them even knowing why. AWESOME! "Okay listening to music and I hate Phil Collins", that would be my post right now. My point to this is that I was reading FB last week, and cracking a smile at all the nonsense when I came across, "I'm so stressed out, my car is giving me trouble, this sucks", and then I thought briefly yeah that does suck, next post, "Please pray for my son who lost his battle to JDM last night". WTF!!!!!
This disease/condition/disorder/crap I still haven't figured out how to label is such a sucker punch! It hasn't been a low riders dream, "low and slow", it's NASCAR. (Confession I saw La Mission last night) My last post was the end of January. That particular time was really tough because Sascha's JDM was getting out of control and we had not quite figured it out. I'm not even sure what I wrote at that time because I never reread what I write; I truly don't want to relive the situation or my grammar/writing issues. I should have Alonzo write this but we all know it would be perfect and probably take him 12 hrs to make sure of that. Unlike his wife, who will whip it out in an hour and regret my English skills within 15 minutes of a phone call from my Stanford educated brother in law (I would list the rest of his credentials but it may just make you envious and more importantly he may kill me). You know I still love you, P.
Back to JDM, after the FEB. 14th JDM convention we were schooled. Found out she wasn't doing well, her numbers were all over the place and none of them really looked good. So the result was maxing her out on all of her meds and hoping for the best. When you max a kid out with those dosages it's crazy. Her behavior changed, she wasn't well enough to make it a full day at school after treatment, she felt "yucky" a lot, depression set in (on a 5yr old WHATEVER!), and her weight was all over the place. It was enough to make me just want to curl up in a corner and cry. I tear up now as I write it. Her nurse Mary Ann is truly amazing, she has really been my rock at times. She is my horse whisperer. Her words are too the point but delivered with a little bit of sugar. Miranda, "buckle up", Miranda if I had you take some of this You would be crazy, you should just taste it...it will make your mouth taste like metal, I wouldn't think you were terrible if you did this or that, and my fav when I questioned the power of how one pill can make you "normal"... "Miranda you really need to take 'that' pill everyday as prescribed!" Love her.
I posted a pic of her prek graduation where she is wearing a back pack (this is where her IV is stored), this day she is getting treatment. Her treatment every three weeks is about 7hrs long. We pretty much missed it because, one I was off with the time and the other is we started her treatment at 8am by the time we got there they had just finished. Totally heart breaking by the way. I almost missed my daughter graduating pre kinder because they had to poke her body to give her crazy drugs for a disease that has no cure. (pity party xcel) The director came in and made the effort to bring her up anyways and let everyone know that she made it and wanted to be a dentist when she grew up. On this day she tried so hard to be like the other kids, happy and strong. She forced her smile, never laughed and couldn't hang out long on the playground. I will remember this day for the rest of my life, only for different reasons than the other parents. When I look back on the pictures it breaks my heart, until I get to the picture that I posted with the three of us (Sascha, Diego and myself). This was the only pic I have that day where she smiled. This is what makes me strong, what keeps me going, the ability to make her smile. Just knowing I can do that, I can get through anything. Her smile is my fuel.
Like I said earlier, JDM is one big sucker punch. Treatment at prek grad, flare up before her dream trip to Disney (we almost weren't able to go), open sores all over her mouth during summer trip to Chicago, Facial staph infection before trip to NY for her sister's 13th bday. (Side note, took Jazzy to NYC without her siblings for her bday, had a fabulous time, very relaxing. Thank you so much to my sisters, Carmen and Mary for allowing us to go. They held down the fort with the two kids and dog. Sascha was taking meds every 2-3 hrs everyday while we were gone, not too many people can keep up with all of that.) With every fight comes a victory, she has actually graduated from every week to every other week with nurse visits. (When the nurse visits you know she brings in the heavy meds) Hopefully in the upcoming months, we can see the old Sascha back. She may start to feel like herself again. Our short term goal right now is to have her nurse visits down to once a month, this will mean we are closer to remission. At least this is what I believe.
Fast forward to present day. You may want to sit down for this......I have decided to home school Sascha. YES H-O-M-E-S-C-H-O-O-L! This was my year, all three in school, ask me to lunch, anybody, anybody, just ask me to lunch I was a yes! Reality- now I'm not. (3rd pity party over). After that facial staph infection, I freaked out. If you remember last year with the outbreak of the swine flu, what will be in store for us this year, the mammal itch, the dino rash, salamander cough, tarantula twist. It's kinder! Do you know the germs in KINDER! I could just take her to the ER and let her lick the bathroom door handles that may be the same thing. I prayed, listed my options, prayed again, and came to some conclusions, (1) I'm capable (2) I have the time (3) and most important, I could never forgive myself if she gets sick at school and we are back to square one maxing her out again. Can I tell you the concern I had from everyone around me, Alonzo, Jaz, my friends. I was waiting for a call from CPS. Did they catch me on that camera at Target? Not really, after the shock wore off, they were a little more supportive. More like, "If you need me, pls pls pls just call me right away!" Whatever, I can do this. My plan with this is that I do it for a year then regroup. If I have to do it longer than I will. Until second grade anyway, we don't need her to be like Waterboy, "my mama said". No worries though, I'm not stupid, I have made it my life to surround myself with highly intelligent people. I have Jimmie for Science, Miss Angela for Spanish, a third language there is options-Pedro, Math Dennis, and then I figured I can just take her up to the ARCHON BLDG, and they can fill in the rest of the gaps- hello Mark, Chris, Liz, Dan, Ropko, Jr., etc. Not to mention Jazzy has her little GT friends to help, $10 and pizza can go a long way. I didn't mention her dad, because we can only pull poor Alonzo in so many directions, if he gets fried, we are in trouble! And when I say we, I really mean me.
Well, I think that's it in a nutshell, a huge Brazilian nut shell. We are still going strong as a family, loving each other more each day and remaining strong. Jazmine is in the eighth grade now and has been an amazing big sister, Diego is Sascha's rock or at least unconditional dart board. He has started pre k and has finally stopped crying, thank you Jen for the car pool idea, because at least now I can finally say "I didn't hear him cry". Alonzo just had a bday, 41 years old- he looks better than when I met him..yay me. For myself, always looking forward to the next girls dinner out (sure love the power of women) and still trying to love running. I ran my first 1/2 marathon and raised over 5,000 for cure JM thanks SOOOOOO much to all for contributing. My next run??? for sure next summer (CUREJM convention), and maybe this fall. UGH!
Thanks again for listening, for being our friend. We love you and all that you do, we continue to value your friendship.
I will leave you with this, last week Sascha told me "Mom when I grow up I don't want to be like you", yes DON'T, I was drowning with insecurity, why could my own daughter not want to be like me, it HAS to be that damn stay at home mom crap...Nope, it wasn't...Sascha in her finest form, "I NEVER want to get up before the sun to go run or workout, that's just crazy. Who does that?"
If you want to more pics, pls hit "previous post" thx
This September will be our one year anniversary from the start of her treatments. This past July was the one anniversary of her diagnosis. I still can't believe it's my Sascha who is going through this. I really don't allow myself pity parties because I know that I'm not the only ticket holder for the roller coaster from hell. Man, life is nuts. If you are a member of FB you know that reading little bits of every body's life is comical. I don't get on it often but when I do, I always laugh to see what people put. "Love the martini yesterday-thx ?, got my nails done, pray for me too ..., I hate men, my kids suck, etc" It's funny that men never post negative info about their wives, or at least I haven't seen any. I'm sure they know we will find out and truly have the power to make their lives miserable without them even knowing why. AWESOME! "Okay listening to music and I hate Phil Collins", that would be my post right now. My point to this is that I was reading FB last week, and cracking a smile at all the nonsense when I came across, "I'm so stressed out, my car is giving me trouble, this sucks", and then I thought briefly yeah that does suck, next post, "Please pray for my son who lost his battle to JDM last night". WTF!!!!!
This disease/condition/disorder/crap I still haven't figured out how to label is such a sucker punch! It hasn't been a low riders dream, "low and slow", it's NASCAR. (Confession I saw La Mission last night) My last post was the end of January. That particular time was really tough because Sascha's JDM was getting out of control and we had not quite figured it out. I'm not even sure what I wrote at that time because I never reread what I write; I truly don't want to relive the situation or my grammar/writing issues. I should have Alonzo write this but we all know it would be perfect and probably take him 12 hrs to make sure of that. Unlike his wife, who will whip it out in an hour and regret my English skills within 15 minutes of a phone call from my Stanford educated brother in law (I would list the rest of his credentials but it may just make you envious and more importantly he may kill me). You know I still love you, P.
Back to JDM, after the FEB. 14th JDM convention we were schooled. Found out she wasn't doing well, her numbers were all over the place and none of them really looked good. So the result was maxing her out on all of her meds and hoping for the best. When you max a kid out with those dosages it's crazy. Her behavior changed, she wasn't well enough to make it a full day at school after treatment, she felt "yucky" a lot, depression set in (on a 5yr old WHATEVER!), and her weight was all over the place. It was enough to make me just want to curl up in a corner and cry. I tear up now as I write it. Her nurse Mary Ann is truly amazing, she has really been my rock at times. She is my horse whisperer. Her words are too the point but delivered with a little bit of sugar. Miranda, "buckle up", Miranda if I had you take some of this You would be crazy, you should just taste it...it will make your mouth taste like metal, I wouldn't think you were terrible if you did this or that, and my fav when I questioned the power of how one pill can make you "normal"... "Miranda you really need to take 'that' pill everyday as prescribed!" Love her.
I posted a pic of her prek graduation where she is wearing a back pack (this is where her IV is stored), this day she is getting treatment. Her treatment every three weeks is about 7hrs long. We pretty much missed it because, one I was off with the time and the other is we started her treatment at 8am by the time we got there they had just finished. Totally heart breaking by the way. I almost missed my daughter graduating pre kinder because they had to poke her body to give her crazy drugs for a disease that has no cure. (pity party xcel) The director came in and made the effort to bring her up anyways and let everyone know that she made it and wanted to be a dentist when she grew up. On this day she tried so hard to be like the other kids, happy and strong. She forced her smile, never laughed and couldn't hang out long on the playground. I will remember this day for the rest of my life, only for different reasons than the other parents. When I look back on the pictures it breaks my heart, until I get to the picture that I posted with the three of us (Sascha, Diego and myself). This was the only pic I have that day where she smiled. This is what makes me strong, what keeps me going, the ability to make her smile. Just knowing I can do that, I can get through anything. Her smile is my fuel.
Like I said earlier, JDM is one big sucker punch. Treatment at prek grad, flare up before her dream trip to Disney (we almost weren't able to go), open sores all over her mouth during summer trip to Chicago, Facial staph infection before trip to NY for her sister's 13th bday. (Side note, took Jazzy to NYC without her siblings for her bday, had a fabulous time, very relaxing. Thank you so much to my sisters, Carmen and Mary for allowing us to go. They held down the fort with the two kids and dog. Sascha was taking meds every 2-3 hrs everyday while we were gone, not too many people can keep up with all of that.) With every fight comes a victory, she has actually graduated from every week to every other week with nurse visits. (When the nurse visits you know she brings in the heavy meds) Hopefully in the upcoming months, we can see the old Sascha back. She may start to feel like herself again. Our short term goal right now is to have her nurse visits down to once a month, this will mean we are closer to remission. At least this is what I believe.
Fast forward to present day. You may want to sit down for this......I have decided to home school Sascha. YES H-O-M-E-S-C-H-O-O-L! This was my year, all three in school, ask me to lunch, anybody, anybody, just ask me to lunch I was a yes! Reality- now I'm not. (3rd pity party over). After that facial staph infection, I freaked out. If you remember last year with the outbreak of the swine flu, what will be in store for us this year, the mammal itch, the dino rash, salamander cough, tarantula twist. It's kinder! Do you know the germs in KINDER! I could just take her to the ER and let her lick the bathroom door handles that may be the same thing. I prayed, listed my options, prayed again, and came to some conclusions, (1) I'm capable (2) I have the time (3) and most important, I could never forgive myself if she gets sick at school and we are back to square one maxing her out again. Can I tell you the concern I had from everyone around me, Alonzo, Jaz, my friends. I was waiting for a call from CPS. Did they catch me on that camera at Target? Not really, after the shock wore off, they were a little more supportive. More like, "If you need me, pls pls pls just call me right away!" Whatever, I can do this. My plan with this is that I do it for a year then regroup. If I have to do it longer than I will. Until second grade anyway, we don't need her to be like Waterboy, "my mama said". No worries though, I'm not stupid, I have made it my life to surround myself with highly intelligent people. I have Jimmie for Science, Miss Angela for Spanish, a third language there is options-Pedro, Math Dennis, and then I figured I can just take her up to the ARCHON BLDG, and they can fill in the rest of the gaps- hello Mark, Chris, Liz, Dan, Ropko, Jr., etc. Not to mention Jazzy has her little GT friends to help, $10 and pizza can go a long way. I didn't mention her dad, because we can only pull poor Alonzo in so many directions, if he gets fried, we are in trouble! And when I say we, I really mean me.
Well, I think that's it in a nutshell, a huge Brazilian nut shell. We are still going strong as a family, loving each other more each day and remaining strong. Jazmine is in the eighth grade now and has been an amazing big sister, Diego is Sascha's rock or at least unconditional dart board. He has started pre k and has finally stopped crying, thank you Jen for the car pool idea, because at least now I can finally say "I didn't hear him cry". Alonzo just had a bday, 41 years old- he looks better than when I met him..yay me. For myself, always looking forward to the next girls dinner out (sure love the power of women) and still trying to love running. I ran my first 1/2 marathon and raised over 5,000 for cure JM thanks SOOOOOO much to all for contributing. My next run??? for sure next summer (CUREJM convention), and maybe this fall. UGH!
Thanks again for listening, for being our friend. We love you and all that you do, we continue to value your friendship.
I will leave you with this, last week Sascha told me "Mom when I grow up I don't want to be like you", yes DON'T, I was drowning with insecurity, why could my own daughter not want to be like me, it HAS to be that damn stay at home mom crap...Nope, it wasn't...Sascha in her finest form, "I NEVER want to get up before the sun to go run or workout, that's just crazy. Who does that?"
If you want to more pics, pls hit "previous post" thx
Wednesday, January 20, 2010
Even longer update...
Happy New Year! Crazy that it's 2010 already, I could have sworn I was 27 last year. How does this happen? Parents and grandparents, they warn you about this~ how quickly life goes by. It felt like just yesterday when an older gentlemen in a restaurant looked at my three kiddos and said "love this moment because time flies by"... during that moment Jazzy wouldn't stop talking, Sascha was running in circles, I haven't put a bite of food in my mouth and I was still waking up every two hours with Diego, my response (to myself) was "Yeah right, not fast enough!" Okay I take that back (right now).
Several things have happened since I last blogged. Sascha was showing real progress with her pulsing (IV infusions) in Nov, and Dec., aside from dealing with pretty much all the side affects, her numbers were looking good. It's funny how people compare life to a car ride, with all it's twists and turns. I think about that a lot and whole heartily believe it's true. For example, when you are driving and enjoying the view, there are times it may go unnoticed that you have driven through mud. That is, right until some moron comments, "damn when was the last time you washed your car?" God Bless them and the voodoo doll that slightly may resemble them in my drawer. How can a single statement ruin a moment? In other words, I thought I learned how to deal with it all, and appreciate my life all over again, right until I'm found second guessing my position because someone will comment on Saschas new found voluptuous figure, or the rash on her face, or my new found back side ( and I mean the whole back side), thank you, you wonderful chocolate chip soft yet crunchy Pillsbury. Okay, the truth is, nobody I know is that brave to comment to my face about my backside, I'm actually dealing with my own insecurities. Reality.
Back to Sascha, because all of her numbers were showing progression (VERY GOOD THING), in Nov. both parties(Chicago and Dallas) figured it was time to start weaning her off the pulsing. Remember these were "toxic" levels they were giving her and it was so tough on her little body. Now both parties have a different way of weaning. Long story short, in Dec. we changed her meds to a milder form. Chicago would have liked to keep pulsing, just not as much. We didn't go with this method because we do not live in Chicago, we needed to go with a more abrupt form. I had a bad feeling about this all along, but because of the rarity of this disease, it almost becomes a trial and error thing. She is reacting well to the meds. Other than the fact that it is two pills twice a day one hour before she eats/2hrs after, plus another med she needs on a full stomach, and 3 other pills in between. Yeah she is four, goes to school, has playgroups and still takes a nap...WHATEVER...pass the VODKA please! All this aside, we went last week and she still shows no muscle weakness according to her labs. I've witnessed something different. The rash on her face has blown up, the rash on her knees has appeared again, she pedals her bike like she's just learning. What does all this mean? We sit back and wait for the next lab, we give the medicine time and see what happens. I truly leave this in God's hands, please give us the strength and the determination to do the right thing for our daughter. As for Sascha, because the amount of steroids has drastically decreased we are now able to take her out without so much hesitation. It's Sascha, there has always been hesitation. I can tell you there has been about 6 people so far that have told me how much nicer she is. That just makes me laugh, I can't imagine what previous side of her they have seen. Don't get me wrong, she still has her moments. She just doesn't look like she might have a parole officer oppose to a counselor in her future. But she is really awesome and remains so super strong. As for the rest of us, Alonzo has been an awesome hands on daddy (he prefers Tequila), Jazzy is still in her own world + IPOD = lala land, Diego is still learning how to defend himself at home and on the playground. Lonz says if he doesn't know how to take a hit on the football field he's going to freak...friends pls pass him the tequila while his son is dancing hip hop next to his sister. And of course myself, I'm doing great. I'm still laughing, I have 346 new year resolutions. I try to be impressive, before you find out the truth. I will be running my first 1/2 marathon in March, freaks me out. I may even do the one for Myositis in Feb. (of course Alonzo tells me about his one, AFTER I had already signed up for the freakin March one). If you think he's trying to kill me to collect the insurance and hang out with some pretty skirt, pls let me know, call direct! I have friends in Juarez that can take care of that pretty boy...okay did I go too far? hehe
Let me leave you with this, a new year is filled with so much promise. It's a clean slate for everybody to be a better person in about 346 ways (does that number look familiar?). Get nasty and try all 346 ways, you may surprise yourself and those around you. In the last 50 conversations I've had with different people we have covered current events relating to 4 different cancers, 2 deaths, 1 heart attack, 2 miscarriages, possible divorces (won't even tell you how many or who), and the debacle in Haiti. You really never know what's around the corner. Leave negative baggage behind you and open yourself up to love harder. We need this.
Always Peace and love
Several things have happened since I last blogged. Sascha was showing real progress with her pulsing (IV infusions) in Nov, and Dec., aside from dealing with pretty much all the side affects, her numbers were looking good. It's funny how people compare life to a car ride, with all it's twists and turns. I think about that a lot and whole heartily believe it's true. For example, when you are driving and enjoying the view, there are times it may go unnoticed that you have driven through mud. That is, right until some moron comments, "damn when was the last time you washed your car?" God Bless them and the voodoo doll that slightly may resemble them in my drawer. How can a single statement ruin a moment? In other words, I thought I learned how to deal with it all, and appreciate my life all over again, right until I'm found second guessing my position because someone will comment on Saschas new found voluptuous figure, or the rash on her face, or my new found back side ( and I mean the whole back side), thank you, you wonderful chocolate chip soft yet crunchy Pillsbury. Okay, the truth is, nobody I know is that brave to comment to my face about my backside, I'm actually dealing with my own insecurities. Reality.
Back to Sascha, because all of her numbers were showing progression (VERY GOOD THING), in Nov. both parties(Chicago and Dallas) figured it was time to start weaning her off the pulsing. Remember these were "toxic" levels they were giving her and it was so tough on her little body. Now both parties have a different way of weaning. Long story short, in Dec. we changed her meds to a milder form. Chicago would have liked to keep pulsing, just not as much. We didn't go with this method because we do not live in Chicago, we needed to go with a more abrupt form. I had a bad feeling about this all along, but because of the rarity of this disease, it almost becomes a trial and error thing. She is reacting well to the meds. Other than the fact that it is two pills twice a day one hour before she eats/2hrs after, plus another med she needs on a full stomach, and 3 other pills in between. Yeah she is four, goes to school, has playgroups and still takes a nap...WHATEVER...pass the VODKA please! All this aside, we went last week and she still shows no muscle weakness according to her labs. I've witnessed something different. The rash on her face has blown up, the rash on her knees has appeared again, she pedals her bike like she's just learning. What does all this mean? We sit back and wait for the next lab, we give the medicine time and see what happens. I truly leave this in God's hands, please give us the strength and the determination to do the right thing for our daughter. As for Sascha, because the amount of steroids has drastically decreased we are now able to take her out without so much hesitation. It's Sascha, there has always been hesitation. I can tell you there has been about 6 people so far that have told me how much nicer she is. That just makes me laugh, I can't imagine what previous side of her they have seen. Don't get me wrong, she still has her moments. She just doesn't look like she might have a parole officer oppose to a counselor in her future. But she is really awesome and remains so super strong. As for the rest of us, Alonzo has been an awesome hands on daddy (he prefers Tequila), Jazzy is still in her own world + IPOD = lala land, Diego is still learning how to defend himself at home and on the playground. Lonz says if he doesn't know how to take a hit on the football field he's going to freak...friends pls pass him the tequila while his son is dancing hip hop next to his sister. And of course myself, I'm doing great. I'm still laughing, I have 346 new year resolutions. I try to be impressive, before you find out the truth. I will be running my first 1/2 marathon in March, freaks me out. I may even do the one for Myositis in Feb. (of course Alonzo tells me about his one, AFTER I had already signed up for the freakin March one). If you think he's trying to kill me to collect the insurance and hang out with some pretty skirt, pls let me know, call direct! I have friends in Juarez that can take care of that pretty boy...okay did I go too far? hehe
Let me leave you with this, a new year is filled with so much promise. It's a clean slate for everybody to be a better person in about 346 ways (does that number look familiar?). Get nasty and try all 346 ways, you may surprise yourself and those around you. In the last 50 conversations I've had with different people we have covered current events relating to 4 different cancers, 2 deaths, 1 heart attack, 2 miscarriages, possible divorces (won't even tell you how many or who), and the debacle in Haiti. You really never know what's around the corner. Leave negative baggage behind you and open yourself up to love harder. We need this.
Always Peace and love
Thursday, October 8, 2009
Very long update...
October 7, 2009
Sascha’s update. Okay here we are in fall, the weather is great and I love the overcast. I have always had a love affair with the fall, but never in my life did I think my past feelings would link to my present-for reasons I could never imagine. In my past the excitement stemmed from every selfish feeling you could think of, the smell of harvest, outdoor festivals, Halloween, parties on the patio. Now it’s much more intimate, the ability to watch my daughter play outside. As we witnessed during the summer, she tends to overheat. With the slightest exposure to sun, she rashes out for days. Her body becomes limp after just a few hours. The constant reapplication of sun block is exhausting, “does she have enough on? Is it still on? Will it stay on? Oh crap she just got wet, do you still think it’s on?” This pounds through your mind like the ghetto blaster heard in the 1983 Honda civic with the 22” rims. Yeah don’t even act like you haven’t heard that “joker” blasting Jay Z through every town. Anyway, glad to see the overcast, the cool weather and Sascha’s smile.
She has been amazing with her treatments. She is known as the 4 year old who doesn’t cry. She gets her IV like a champ. They have been more concerned with mommy than daughter. Watching that needle pierce her skin and knowing that it is going through her vain to then be flooded with toxic levels of steroids isn’t exactly a picnic. Sascha however, watches the whole thing. We even had a “gusher”, yeah that’s what I said a GUSHER. Sascha just watched as the blood shot out of her hand, I on the other hand was just praying it didn’t hit the ceiling. Okay we all know it wouldn’t quite make it that far, but in the moment it becomes a different feeling. During the three days of treatment she is definitely tired and sluggish. They mentioned that it may give her a profound jolt shortly after receiving the drug. This part is true, but short lived. What goes up definitely comes down. In this experience it comes down fairly quickly and basically stays down. A couple days after her treatment, she is back 110%, I know you mathematicians cringe at this percentage. The reason I gave it an extra 10% is that she is actually an additional 10% nicer than normal. She is a different child for all the right reasons. It’s fantastic. I just want to show her off like a prized stallion. Especially to all the people she had offended the 4 days before. If you are one of them reading the blog, again sorry.
There has been a lot of snuggling and hugs. She loves this. I have to admit so do I. Just like everything, you have to find the upside to it all. I have found another person in my daughter to which I didn’t know existed. One waits years for their kids to mature to see what they become or who they are. I have had the gift of insight through this. For one, I have never seen her more beautiful, her sneaky smile is not only cute and innocent but it also has a dash of mischief. Her strength is similar to the writings of the Greek warriors. I’m not talking about the women who loved hard and stood up to the hand that slapped them down either. I dare compare her to the men who took down cities, who fought with passion and conviction. This is a four year old who walks into every appointment, not behind me but in front of me. She looks everyone in the eye and studies their every move and learns their position in all of this, their hierarchy. When there is discussions about her, she doesn’t pick up a book and let the adults talk, she sits upright and doesn’t allow herself any distractions. She was getting her infusion yesterday, and we had a new nurse. The nurse was occupied on the phone, when Sascha decides to interrupt her and say in her daintiest of voices, “excuse me miss, are you ever going to check my heart and blood pressure?” Man I wish I could have taken the nurses picture. She gave Sascha a look, it was written all over her face, “this kid isn’t that cute”. Sascha could care less what people think of her. Of course I looked at Sascha as well, and she knew what was coming, she popped her head in my direction and answered my look by saying, “WHAT, it’s true, every 15 min.” You know I couldn’t argue with that.
As far as the other two kids, Diego is still learning to use his voice and fight back. Jazzy is in love with Sascha’s “happy day” and bites her lip on the other ones. She continues to be a very loving sister. We just need to pray for Savvy, this is one dog who is depressed. With all the madness in the home, she is just begging for a belly rub. She went from 5 a day to about 5 a month. It’s not like we don’t notice her, she’s 95 pounds. She started to eat their toys so at least she is getting a little attention now. We just won’t mention what kind of attention.
I will now add a new section to my blog. It is “STEROID MOMENTS”. This is the comic relief moments that we can only blame on the meds. Or that we choose to anyway.
STEROID MOMENT
On Sascha’s second day of infusion we need to pick up some stuff at CVS. Remember she has the IV in her hand that the nurse wraps it up so she remembers that it’s in and doesn’t bump it. Okay with all this said we are checking out at the counter and the 20yr old at the register is looking at Sascha’s arm. I now know that my daughter has been getting a little tired of explaining her situation. All I’m doing at this point is rushing and hoping this cute little 20yr old doesn’t say anything so she is not exposed to Sascha’s wrath. But you know she does…”Hey sweetie, did you break your arm?” Here it goes, Sascha’s words with the stare of Cujo, “UH no, I was POKED, now?, can you stop staring at my arm!” This little 20yr crumbled like a deck of cards, “OHHH, I’m so sorry I wasn’t staring”, Sascha, “UH, yeah you were”. girl “okay I’m sorry” Sascha looking to the left and rolling her eyes, “yeah, okay”. As Jazzy would say, “WELCOME TO MY WORLD”.
Thanks again for taking the time to read my blog. Remember to take all the good with the all bad. God willing, the gift of a new day, a new start, is around the corner. Oh yeah, and there is always VODKA!
Peace and love
Sascha’s update. Okay here we are in fall, the weather is great and I love the overcast. I have always had a love affair with the fall, but never in my life did I think my past feelings would link to my present-for reasons I could never imagine. In my past the excitement stemmed from every selfish feeling you could think of, the smell of harvest, outdoor festivals, Halloween, parties on the patio. Now it’s much more intimate, the ability to watch my daughter play outside. As we witnessed during the summer, she tends to overheat. With the slightest exposure to sun, she rashes out for days. Her body becomes limp after just a few hours. The constant reapplication of sun block is exhausting, “does she have enough on? Is it still on? Will it stay on? Oh crap she just got wet, do you still think it’s on?” This pounds through your mind like the ghetto blaster heard in the 1983 Honda civic with the 22” rims. Yeah don’t even act like you haven’t heard that “joker” blasting Jay Z through every town. Anyway, glad to see the overcast, the cool weather and Sascha’s smile.
She has been amazing with her treatments. She is known as the 4 year old who doesn’t cry. She gets her IV like a champ. They have been more concerned with mommy than daughter. Watching that needle pierce her skin and knowing that it is going through her vain to then be flooded with toxic levels of steroids isn’t exactly a picnic. Sascha however, watches the whole thing. We even had a “gusher”, yeah that’s what I said a GUSHER. Sascha just watched as the blood shot out of her hand, I on the other hand was just praying it didn’t hit the ceiling. Okay we all know it wouldn’t quite make it that far, but in the moment it becomes a different feeling. During the three days of treatment she is definitely tired and sluggish. They mentioned that it may give her a profound jolt shortly after receiving the drug. This part is true, but short lived. What goes up definitely comes down. In this experience it comes down fairly quickly and basically stays down. A couple days after her treatment, she is back 110%, I know you mathematicians cringe at this percentage. The reason I gave it an extra 10% is that she is actually an additional 10% nicer than normal. She is a different child for all the right reasons. It’s fantastic. I just want to show her off like a prized stallion. Especially to all the people she had offended the 4 days before. If you are one of them reading the blog, again sorry.
There has been a lot of snuggling and hugs. She loves this. I have to admit so do I. Just like everything, you have to find the upside to it all. I have found another person in my daughter to which I didn’t know existed. One waits years for their kids to mature to see what they become or who they are. I have had the gift of insight through this. For one, I have never seen her more beautiful, her sneaky smile is not only cute and innocent but it also has a dash of mischief. Her strength is similar to the writings of the Greek warriors. I’m not talking about the women who loved hard and stood up to the hand that slapped them down either. I dare compare her to the men who took down cities, who fought with passion and conviction. This is a four year old who walks into every appointment, not behind me but in front of me. She looks everyone in the eye and studies their every move and learns their position in all of this, their hierarchy. When there is discussions about her, she doesn’t pick up a book and let the adults talk, she sits upright and doesn’t allow herself any distractions. She was getting her infusion yesterday, and we had a new nurse. The nurse was occupied on the phone, when Sascha decides to interrupt her and say in her daintiest of voices, “excuse me miss, are you ever going to check my heart and blood pressure?” Man I wish I could have taken the nurses picture. She gave Sascha a look, it was written all over her face, “this kid isn’t that cute”. Sascha could care less what people think of her. Of course I looked at Sascha as well, and she knew what was coming, she popped her head in my direction and answered my look by saying, “WHAT, it’s true, every 15 min.” You know I couldn’t argue with that.
As far as the other two kids, Diego is still learning to use his voice and fight back. Jazzy is in love with Sascha’s “happy day” and bites her lip on the other ones. She continues to be a very loving sister. We just need to pray for Savvy, this is one dog who is depressed. With all the madness in the home, she is just begging for a belly rub. She went from 5 a day to about 5 a month. It’s not like we don’t notice her, she’s 95 pounds. She started to eat their toys so at least she is getting a little attention now. We just won’t mention what kind of attention.
I will now add a new section to my blog. It is “STEROID MOMENTS”. This is the comic relief moments that we can only blame on the meds. Or that we choose to anyway.
STEROID MOMENT
On Sascha’s second day of infusion we need to pick up some stuff at CVS. Remember she has the IV in her hand that the nurse wraps it up so she remembers that it’s in and doesn’t bump it. Okay with all this said we are checking out at the counter and the 20yr old at the register is looking at Sascha’s arm. I now know that my daughter has been getting a little tired of explaining her situation. All I’m doing at this point is rushing and hoping this cute little 20yr old doesn’t say anything so she is not exposed to Sascha’s wrath. But you know she does…”Hey sweetie, did you break your arm?” Here it goes, Sascha’s words with the stare of Cujo, “UH no, I was POKED, now?, can you stop staring at my arm!” This little 20yr crumbled like a deck of cards, “OHHH, I’m so sorry I wasn’t staring”, Sascha, “UH, yeah you were”. girl “okay I’m sorry” Sascha looking to the left and rolling her eyes, “yeah, okay”. As Jazzy would say, “WELCOME TO MY WORLD”.
Thanks again for taking the time to read my blog. Remember to take all the good with the all bad. God willing, the gift of a new day, a new start, is around the corner. Oh yeah, and there is always VODKA!
Peace and love
Sunday, September 20, 2009
About Time...
I've started this blog, then erased it about 5 times. I couldn't quite get the words together to express the situation. Sascha is doing well, thank God. She had her first treatment of steroids and chemo the week before last. She definitely did better than her parents. We kept looking at her as though she were made of glass. She would return the look like we were full of crap. Beautiful moment. At least she wasn't flashing that "wish you were dead" look she kept giving the nursing staff. After the first hour, I'm sure she no longer looked that cute to the staff. Needless to say we were given a pass every night to go home. (The cool thing with Scottish Rite is because they don't deal with the red tape of insurance they allow you to sleep in your own bed whenever possible.)
The first time Sascha had any interaction with the nurses, they promised her one stick with her IV. Three sticks later, and the piercing sound of "NOT MY HAND", they were no longer her friends. To Sascha, they were a bunch of hideous liars, and my daughter felt the need to remind them every moment with one glare of her eye. I would like to believe that I have no idea where Sascha gets it from, but as anyone who knows me~including that jackass at the bar in Chicago, my belief would be a joke. That apple never fell far from this tree.
Okay speaking of BIG JOKES, to remind you, Sascha needs the steroid infusion every other week and the chemo once a week. The chemo comes in the form of a shot. Guess who is suppose to administer this shot. YEAH, you guessed it, her parents. What the @#$%! I immediately sent a letter to my man and his squeeze, Barack and Michelle, they need to look into this whole health care system from every angle. Did I mention the letter never really left my mind, just a good thought. In what world is it a good idea for me to give anyone a shot. They should give people an anger management assessment first before a prescription like that is given. I have about 40 friends to back this theory up. After that bobcat sighting in our neighborhood a month ago, a friend suggested I carry a little heat on my morning jogs. I still laugh at the idea of carrying heat period. I can't imagine, I would be whipping it out all the time. Would YOU like to talk back to me oooone more time Jazzy?, Hey Sascha~ say whatever oooone more time!, Go ahead you curly headed boy cry oooone more time, Hey Lonz remember when you were trying to figure out if that girl was from Argentina?. And that's just my family. Now let's picture Alonzo giving a shot... come on, he's been hitting that tequila bottle since he was 10! I know his hands must be shaky as hell. He has about 50 friends that can back this theory up, most of them bought the bottles! Speaking of friends, let us give an Alleluia for Adrienne. My little pediatric ICU nurse friend, what a beautiful person. She came over with her skill and polished that puppy quick. I felt a little weak when she did it, so this only means I am NOT ready. I hope to be ready by Thanksgiving. Let us pray.
The question we have heard the most after "How's Sascha", is how are you guys doing? We are fine. Alonzo looks better every day. At the start he just carried the world on his shoulders. He has always had a special connection with Sascha, her birth was the first thing that made him smile after his moms passing two months prior. He's still quite, but his smile is still lighting up the room and our lives. Jazzy is doing great in school, still full of drama but equally full of love. Diego is finally learning how to defend himself, he is the one who is feeling the side affects of the steroid treatment the most. Pray for Go Go, Sheena Sascha warrior princess is kicking his butt and keeping score. As for myself, I'm doing fine. I enjoy my Lord's sense of humor. Every time I just want to curl up and cry, there is something that reminds me not too. I was worried about Sascha having too many drugs in her system, and friend tells me her mother is in stage 3 of her breast cancer and will have heavy duty doses of chemo. I was sad thinking about this time last year when I was dealing with my father's death, and a friend tells me that his dad was diagnosed with colon cancer and he's been sleeping by his bedside since. Saturday was the one year anniversary of my father's death and it was also the same day a mom from Coppell was burying her four year old son. In short, I really am doing fine. I love my family and friends very much, I don't take them for granted, not for a minute. Every moment counts. Today I prayed for patience because it is the only thing I need. Patience to be a better wife, mother, daughter, sister and friend. Thanks to all for keeping in touch and checking in on my Sascha. She loved all the goodies given to her while she was in the hospital. Very thoughtful and very much appreciated by all of us. With my love always...peace.
The first time Sascha had any interaction with the nurses, they promised her one stick with her IV. Three sticks later, and the piercing sound of "NOT MY HAND", they were no longer her friends. To Sascha, they were a bunch of hideous liars, and my daughter felt the need to remind them every moment with one glare of her eye. I would like to believe that I have no idea where Sascha gets it from, but as anyone who knows me~including that jackass at the bar in Chicago, my belief would be a joke. That apple never fell far from this tree.
Okay speaking of BIG JOKES, to remind you, Sascha needs the steroid infusion every other week and the chemo once a week. The chemo comes in the form of a shot. Guess who is suppose to administer this shot. YEAH, you guessed it, her parents. What the @#$%! I immediately sent a letter to my man and his squeeze, Barack and Michelle, they need to look into this whole health care system from every angle. Did I mention the letter never really left my mind, just a good thought. In what world is it a good idea for me to give anyone a shot. They should give people an anger management assessment first before a prescription like that is given. I have about 40 friends to back this theory up. After that bobcat sighting in our neighborhood a month ago, a friend suggested I carry a little heat on my morning jogs. I still laugh at the idea of carrying heat period. I can't imagine, I would be whipping it out all the time. Would YOU like to talk back to me oooone more time Jazzy?, Hey Sascha~ say whatever oooone more time!, Go ahead you curly headed boy cry oooone more time, Hey Lonz remember when you were trying to figure out if that girl was from Argentina?. And that's just my family. Now let's picture Alonzo giving a shot... come on, he's been hitting that tequila bottle since he was 10! I know his hands must be shaky as hell. He has about 50 friends that can back this theory up, most of them bought the bottles! Speaking of friends, let us give an Alleluia for Adrienne. My little pediatric ICU nurse friend, what a beautiful person. She came over with her skill and polished that puppy quick. I felt a little weak when she did it, so this only means I am NOT ready. I hope to be ready by Thanksgiving. Let us pray.
The question we have heard the most after "How's Sascha", is how are you guys doing? We are fine. Alonzo looks better every day. At the start he just carried the world on his shoulders. He has always had a special connection with Sascha, her birth was the first thing that made him smile after his moms passing two months prior. He's still quite, but his smile is still lighting up the room and our lives. Jazzy is doing great in school, still full of drama but equally full of love. Diego is finally learning how to defend himself, he is the one who is feeling the side affects of the steroid treatment the most. Pray for Go Go, Sheena Sascha warrior princess is kicking his butt and keeping score. As for myself, I'm doing fine. I enjoy my Lord's sense of humor. Every time I just want to curl up and cry, there is something that reminds me not too. I was worried about Sascha having too many drugs in her system, and friend tells me her mother is in stage 3 of her breast cancer and will have heavy duty doses of chemo. I was sad thinking about this time last year when I was dealing with my father's death, and a friend tells me that his dad was diagnosed with colon cancer and he's been sleeping by his bedside since. Saturday was the one year anniversary of my father's death and it was also the same day a mom from Coppell was burying her four year old son. In short, I really am doing fine. I love my family and friends very much, I don't take them for granted, not for a minute. Every moment counts. Today I prayed for patience because it is the only thing I need. Patience to be a better wife, mother, daughter, sister and friend. Thanks to all for keeping in touch and checking in on my Sascha. She loved all the goodies given to her while she was in the hospital. Very thoughtful and very much appreciated by all of us. With my love always...peace.
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