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
Wednesday, August 25, 2010
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
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