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Having eleven children is an amazing blessing and one heck of a crazy ride. Join us through all the joys, smiles, tribulations and trials as we navigate this fabulous journey!

Friday, January 31, 2014

HAPPY FIVE YEARS, BRANDON!!!


Five years ago today, Brandon stood at the kitchen sink, popped open a soda and took his very last dose of cyclosporine. We said a prayer, recorded it on video and then, learned to move on with life. At first, we constantly feared “it” would come back. We made lots of trips for blood work, and I sweated out that 45 to 60 minutes until results were back. My stomach would be in knots as I’d see Dr. Rob or Bob approach with the test results in hand. As they would walk toward me, I’d study their faces…did they look pleased? Worried? Did they have a nurse accompanying them to give me the results?(that usually meant bad news). Did they look like they were going to just hand me the printout or did they seem like they were about to sit down? (sitting is bad too, folks). Brandon had made it to a great place, remission wise, his counts were on the verge of complete normalcy, all except for H & H, which were just a touch below normal (and really, lots of people are that way naturally, so no biggie). He had his life back, we had our life back.

We knew he needed to wean off the medicine so as to avoid further exposure to some pretty serious side effects, yet we also knew weaning too quickly could mean a relapse of the Aplastic Anemia. We’d already had that (relapse) happen once before, and were fortunate that he responded to Cyclosporine a second time without the need for more ATG, so we definitely didn’t want to take our chances with a need for a third. So, we’d spent the better part of a year, slowly tapering off that medication…such a love/hate relationship we had with it. It made his bone marrow do it’s job, thus saving him from probable death unless we could find a bone marrow match, on the other hand, it put tremendous stress on his kidneys, particularly when antibiotics were also needed, which was quite often (we’d once had to stop and restart at a lower dose because his kidney function was suffering), it ran the risk of causing various forms of cancers and it took a horrible toll on his immune system (which was what it was supposed to do, that’s why it worked, but it left him vulnerable to every single virus within a ten mile radius it seemed and viruses in turn, carried the dreaded risk of relapse).

That last dose was such a bittersweet moment…it brought so much joy, and fear. Stopping the medicine meant it’d be time to find out whether or not his bone marrow could fly solo, and do it’s job, or whether its’ production was solely dependent on that Cyclosporine. So we waited, and waited and waited and watched and watched and watched. The first time Bandon was sick with a virus was a real test for his marrow. For any of us, when we are ill, we can experience a temporary minor to moderate drop in our blood counts, they normalize when we get better, and most of the time, we are none the wiser. In Brandon’s case, the theory is that when he caught a virus a few weeks before being diagnosed, his bone marrow never autocorrected and for some reason continued to slow cell production until it eventually came to a halt. So, any time he’d become ill, trips to clinic, blood work and IV antibiotics -heavy duty ones and lots of them -were the norm. Between going to clinic each time he was ill and frequently for “just checking” blood work, we wore out a path down I 64. Over time, we were able to decrease some of that. Eventually we were able to just bring him to clinic after a virus passed and make sure counts were up and at thee month intervals to “just check“. At some point we learned to stop fearing the results of the blood work each and every time. And one glorious day, it occurred to me, that I probably didn’t even really need to wait on the results…they could just call me with them or maybe just not call. No news meant they were fine. And they were. Now, all that’s needed is a periodic CBC which can be done at a local lab closer to home with the results faxed to Dr. Rob if there are any questions, and a ONCE a year checkup back at clinic. His port was removed and he is totally independent of any and all therapies, medications and illness.

Today, Brandon has made it exactly five years with no medication and very cooperative bone marrow. I’m not saying we never worry. We’ll always have a decent fear of relapse and the words “clonal evolution” are the scariest words I know. Clonal evolution refers to a risk that all patients who have had Aplastic Anemia face…about ten to fifteen percent of AA patients will at some point, perhaps years after treatment, develop MDS, or Mylodysplastic Syndrome that will then lead to a mylogenous leukemia. There isn’t really anything (that I know of) that can be done to mitigate that risk, it’s just there. The fact that he’s made a complete recovery and his counts are now completely normal bodes very well in his favor. So, things look amazing for him. We have no reason to think he’ll ever face any further problems from Aplastic Anemia. He has his life back 100 percent. He plays football, and wrestles. He can expect to grow up, get old and have a happy life. And that’s all we’ve ever wanted for him, or for any of our children for that matter. Tonight we are taking him out to celebrate. Anywhere he wants (which is the movies and Buffalo Wild Wings).
Happy five years Brandon. You are a strong kid and we’re so proud of you!


Sunday, January 19, 2014

Pride

Just because I think these are awesome and really, really love them:

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Life has gotten busy. I know that sounds lame, because who’s life isn’t busy? Life is busy in ways that are much different than it used to be. Probably not more or less busy actually, just differently busy. I stopped blogging for a while because even though it was something I enjoy doing, it had started to become a chore. I had always promised myself that if it got to the point where it was no longer fun, and seemed like work, like having to wash a sink full of dirty dishes, or having to assemble five kids for showers or having to clean my room (which almost always needs cleaned) then I’d stop and find something else I enjoy doing instead. After all, with eleven children, or even with one, free time isn’t in that strong a supply to spend it on something that doesn’t bring joy. Lately, I’ve started to miss it though. A few days ago, I looked back over some old posts, and I found so many things- stories and memories- that I’d forgotten all about, memories that would be lost forever if they hadn’t been recorded on this blog. Oh yeah…that’s why I enjoyed blogging! So, I’m interested in starting again, and as always, the purpose is not to write grammatically sound or even coherent posts. It may be sloppy and messy and I fully admit, I like to write in sentence fragments. Yes, I realize they aren’t complete sentences and as such, not proper. I’m not all that great at spelling, and I ramble. But that’s not why I write or don’t write this blog. I write this because without it, I’d lose a lot of memories that I’d really love to keep, and my children would lose the ability to look back as grown ups and see what our days were like when they were small. Life gets crazy, our house is frequently chaotic. I don’t take the time that I should to make sure my kids know how much I love them or how precious simple moments with them are to me. So…here we are again. Maybe our blog will get a new name, maybe we’ll just keep the one we have.

So what’s going on now? Everything and nothing all at once. Ordinary life, I suppose. Drew is in college now, trying to find what interests him and what he wants to do. He has a job; he makes good money for an 18 year old who lives at home. Manny works as well, at Pizza Hut here in Mascoutah. He also keeps stats for the basketball team, and had a pretty great season of football. He earned 1st Team All Conference for the Mississippi Valley Conference and Honorable Mention for All Area Large Schools (which is odd in that Mascoutah is not really what I’d call a large school). Brandon also played football last year and is now in wrestling. He loves it. January 31st will mark five years since he took his very last dose of Cyclosporine. Five years of no medications whatsoever and still maintaining remission. He only sees Dr. Rob and Dr. Bob once a year now. To say we feel grateful is an understatement. Jackson started middle school and played football and basketball this season. He’d like to run track in the spring but we’ll have to see what his grades look like; it’s been a rough academic adjustment for him this year. Brice is in 3rd grade and is doing so well! He is having a great year in school and also played football for the first time this past fall. Loved it. The twins are in 1st grade and have the same teacher Brandon had for 1st grade. It’s really neat that their teacher held them when they were newborns. Sydney is in Kindergarten. Her personality hasn’t changed at all and so she’s still stubborn and willful….which is awesome. Bree and Mia are both in Pre-K. They ride the bus together but are in separate classes. Baby Sam is 16 months old and home with me all day long. He’s sweet and happy and in love with his Dad and older brothers. That’s about it. In a nutshell, that’s us. More coming later. Glad to be blogging again.



Tuesday, June 11, 2013

Random Reflections on the Start of Summer

The kids have been out of school for a couple of weeks now, and our family has seemed to get into a nice groove. It’s a very relaxed vibe around here…we sleep in, but not too late, we follow a schedule, but it’s not overly strict. Evenings are lazy and not rushed. Everything about summer time at our house seems to ease my stress and relax all of us, mentally and emotionally. It’s not so much what we are doing that brings about this welcomed easy paced atmosphere, but rather what we are not doing. We are not in a constant race with the clock to manage homework, dinner, chores and showers all in an effort to complete each task and get to bed at a reasonably decent hour. We are not filling our calendar with school events and spelling test dates. Mornings aren’t rushed and filled with yelling and arguing. Instead, we wake up, have breakfast (as quickly or slowly as we need), brush little sets of teeth and get dressed, do chores and then….do whatever each day brings to us, with plenty of down time and plenty of time to do as we wish. Make no mistake, the ever present chaos isn’t gone, but its taken on a different nature…it has lessened in intensity and in that anxiety provoking, fast paced, goal oriented, must-move-along-and-get-the-next-thing-done atmosphere that the school year demands. It is an extremely refreshing change from the busy and hectic month of May, which brought Prom, Senior Spotlight, Honors Night, Graduation, final exams, several Field Day’s and enough spring field trips to drive me insane. Now is exhale time.

We very purposely do not fill our younger children’s schedules with lots of “enrichment” or “activities” for the summer. Not because we think it’s necessarily wrong to do so, but because it’s just not our style. For us, the point of summer is exactly the opposite…it’s to recharge, rest, play and be together. It’s to have time to take advantage of spontaneous opportunities as they arise. We read together regularly, this summer we are doing the Junie B. Jones books and the Fudge Series by Judy Blume. Other than that, all “learning” comes through fun and play and exploration, and not from day care, camps or other formal courses. Manny is an exception, as he’s full throttle into training for football season. But this IS his fun, his passion and what he loves. He’s committed and dedicated and enjoys every minute of it. Well, maybe not every minute of having to be up early, but every single moment of being part of that team.

Tonight we had an impromptu backyard football game, while Albert grilled our dinner. Brandon, Jackson, and Brice played football with a friend, tackling each other, getting more and more competitive as the moments passed, all while Isaiah and Sydney held foot races with one another, weaving in and out of the older kids game, and Bree and Mia took turns on the slide, sliding upside down and backward and shouting for Mommy and Daddy to “watch me, watch me!” each time they attempted a new stunt. Sam sat on my lap, laughing and clapping, highly entertained by all his siblings, and Zoe, the dog, alternated between lying in the grass and nervously chasing and patrolling the boys playing football when their ruckus and aggression became too much for her and she felt the need to “warn” them to calm down. Nights like this one, are the reason I love having a huge family. I thrive on the feelings that nights like tonight bring, because honestly, life brings plenty of the opposite kind as well…the ones where I wonder how I’ll get through until bedtime comes along to rescue me and preserve the tiny sliver of sanity I am clinging to. Tonight was a beautiful re-affirmation…sort of an “Oh yeah, this is why parenting 11 kids totally rocks,” type of night. Summer brings a lot of those. I can’t get enough.

Thursday, June 6, 2013

Hiatus Ended

It has occurred to me that I'm missing out on documenting all sorts of memories and milestones. I have enjoyed the break from blogging and from chronicling our life, and to be honest, face book seemed to fill the need to keep family and friends informed and in touch. For a while, I considered stopping the blog permanently. But I decided against it, mainly because though I really enjoy face book and the instant connections it provides, it isn't as good at preserving our memories as a blog. So, the blog stays.

There are a lot of updates; lots has taken place in the six months since I last posted. Most notable, Drew graduated from high school on May 18, 2013. It's hard to believe our oldest is done...at least with this stage. He is all registered and enrolled for college classes in the fall. He plans to major in vocal performance. We had a fabulous celebration for him at our house, surrounded by family and friends.

Summer is in full swing around here. That means lazy afternoons, trips to the swimming pool, lots of time with friends and more time with Daddy. We have a couple of vacation trips planned with the kids. It's hard now, getting everyone together...getting teenagers to be happy and willing to take a road trip with us. It seems like they've always got other plans, their own lives, and all the obligations and commitments that come with it. We were able to buy a new 15 passenger van to fit our whole family on these trips, though hopefully we won't need one for too many more years. It'd be nice to downsize to a 12 passenger or even a large SUV eventually. And of course, one day, we'll be able to fit in just a mini van again.

I have some things planned for this blog...a re-do so to speak...the pictures and descriptions are old and out dated. So that's on the agenda..though it may be a bit before it happens. And I have a goal to post more frequently. Life is crazy and hectic, and if I don't, then I inevitably forget the fun little stories and happenings that occur so often and then just as quickly, get washed away and buried under the next thing, and the next. I have to record them, or they won't be preserved. They won't even be remembered.


Before I sign off for tonight, here is a memory I will treasure forever and am happy to share. Drew sang in the Senior Spotlight concert. Then, less than a week later, on the same stage, he received a scholarship from the M.U.S.I.C organization at his high school and won the music department's award for "Excellence in Vocal." I can't even describe how proud I am of him.


http://www.youtube.com/watch?v=hrRU7WTopgA

You may have to copy and paste the link into your browser if it doesn't hyper link...


Thursday, December 27, 2012

Christmas Recap

Another Christmas has come and gone and the Fontenot family was very blessed and fortunate this year. We had a fabulous holiday together, with no tears from Mommy at the prospect of Drew not being at home next year, perhaps because Drew announced his intention of returning home for the holidays next December! I am aware this may not happen though....my mom's house is a pretty fun place to spend Christmas as well! We had a great time on Christmas Eve, although, we unintentionally moved away from our habit of NOT going anywhere that day and just staying home together. This year, Drew had to be shuttled to and from work, we ended up needing to make two trips to Walmart,and Manny was back and forth to his girlfriend's house, so the day did have an unfortunate fragmented feel that I hope we won't have next time, but it was still a wonderful day. We did all of our usual things, our Secret Santa exchange, watched A Christmas Story and left our reindeer food and cookies for Santa. Daddy read Twas' the Night Before Christmas and Mommy told the story of Jesus' birth. Just before bed, we checked the Norad Santa tracker and discovered that he was on the East Coast, so our kids eagerly (for once) scrambled upstairs to bed, with no protesting or stalling! When everyone woke up in the morning, we discovered Alexandria had gotten sick in the night and had thrown up all over herself and poor Mia, so we needed to take showers quickly before coming downstairs to see what goodies Santa had left for everyone. Luckily, Alexandria felt much better and so we all trooped down the stairs and Christmas morning chaos began! We opened gifts, tearing off wrapping paper and pulling apart boxes until the last gift had been opened, then Albert and I relaxed on the couch while the little ones played with their new gifts, one of the rare mornings of the year where everyone plays cooperatively with no fighting and no whining. We soaked that in! Yesterday was Manny's 16th birthday, which I was sad to note, we did not get to spend with him because of his insanely busy social calendar. He had a basketball tournament to attend (he helps with the stats for the team)and was gone all day. We did get to briefly give him one of his gifts (a punching bag and boxing gloves) and hastily blow on candles on a candy cane pie since he isn't a fan of traditional birthday cake. That night we saw he and his girlfriend Aylissa before they went off to watch television and again late at night for a couple hours. Can't wait until we all have a day off together in the upcoming week to really celebrate with him. Today, I took down the tree and put up the decorations. We are all ready for New Years. We enjoyed our three days together and now its time for Daddy to get back to work and life to resume in its normal way. Here are a few pics of our Christmas. I hope everyone is blog land had a wonderful holiday as well. christmas2012044 Photobucket Photobucket Photobucket christmas2012051 Photobucket Photobucket Photobucket

Wednesday, December 19, 2012

The Most Wonderful Time of the Year

This is my favorite time of the year. I know that’s completely cliché, but I can’t help it. It’s not the whole materialistic aspect of the season necessarily, though admittedly, the way all the stores are decorated festively and open late to promote all their sales and specials does make me excited. The opportunity to make traditions and memories with the kids is what is the most special to me. This year is particularly bittersweet and precious because this is the first and the last year that we have our whole family together under our roof. This is Sam’s first Christmas in our family, and probably Drew’s last one living here. Hopefully he’ll choose to come back and visit and spend the holidays with us, but this is the last year I’m guaranteed to have him here, and so that means we’re going all out this year. No, not all out gift wise, or shopping wise (though we have plenty of all that too) but all out on doing things together, simple things, basic and ordinary things, but things that will be filled with so much love and will be cherished as one of the sweetest holidays of our family’s history. The day before Thanksgiving, the older boys and I helped the little kids make chocolate dipped pretzels. They were supposed to be for an appetizer on Thanksgiving day, but they didn’t make it that long, they were gobbled up that night and the next morning. Watching the older kids assist their siblings, patiently and without fighting, watching them be excited for the littles as they successfully dipped their pretzel and laid in on the baking pan and then later that evening, watching all their greedy little fingers dripping with chocolate and proudly proclaiming which ones were made by which child melted my heart. I’ve tried hard to keep these fun little traditions going throughout the month of December. In fairness, its nothing new. We’ve always had cute little Christmassy traditions to fill up our evenings and weekends during this month but somehow this year, they mean a little more, probably because I’m a bit weepy at both the prospect of having a brand new life with us this season and simultaneously, having our oldest son at the brink of being completely raised and ready to leave us. Dealing with both ends of this equation keeps me well stocked with fresh tears and lots of smiles. So, we’ve had our fourth annual Polar Express night. This year, we decorated our tree together the same day and then made hot chocolate and popcorn and enjoyed the movie together. The older kids as well as myself could probably recite each word, but it’s like magic to the littler ones. One of the sweetest aspects of having many children is the fact that each year, one of the smaller children seems to really “get it” for the first time ever. This year its Kambree. She watches our Christmas movies as though she’s seeing it for the very first time. Sure, she’s seen it before but she hasn’t really been old enough to understand or become emotionally invested in it. Now, at four, she’s at a perfect age. Her eyes were wide during Polar Express, and she literally sat on the edge of her seat. We’ve also watched Frosty the Snowman and again, even though I’ve watched it since I was a child myself, sitting on the couch with Bree and watching it with her made it brand new again. What an amazing gift being a parent is, it sometimes allows you to experience the best parts of your own childhood all over again. Tonight is Disney’s A Christmas Carol. We’ve seen it at the theater when it first came out, but I think our kids will really enjoy watching it tonight. No one has to sleep in their bed tonight, they will all be camped out on the living room floor with blankets and pillows since the movie essentially comes on near their bedtime anyways. This wont apply to the older kids who have learned by now that a warm bed beats a spot on the floor. We’ve added another thing that will hopefully become a tradition. Each night when I bathe the girls, we talk about the birth of Jesus Christ. We talk about how Mary was in labor looking for a safe, comfortable place to deliver. I take a few liberties and tell the girls how Mary must have been feeling, in labor and they listen intently. We talk about the inn keeper who allowed them to use the barn and then we talk about how awesome Mary must have felt when Jesus was finally born and she held him in her arms. Then we talk about the Wise Men visiting and bringing gifts to baby Jesus and finally about the gift that Jesus gave to all of us. That ties in to why we give gifts to each other and helps the concept of Christmas become more related to Jesus than to Santa. That being said, our children certainly enjoy talking about Santa and visiting him at various places through the month as well. It also wouldn’t be the holiday season without the normal rush of everyday stressors. The kids schools are full of parties, activities and fun things for them to do. With lots of kids in school, it can be quite overwhelming. I really need to be writing a list so I don’t forget anything. This year I need to remember to send in Doritos for Brice’s party, Pretzels for Brandon, something for each of the twins, I need to help Isaiah and Alexandria decorate their Polar Express “tickets” for their party, and help them pack a special gift that they’ve been given to bring for their class show and tell that ties in with the Polar Express theme for their classes. I have a talent show that Jackson is in on Thursday and a Talent show for Drew on Friday. Brandon has an ice skating trip on Friday and will need a sack lunch and I’m drawing a blank on Jackson so I suppose I need to ask him what we should bring. We still need to wrap teacher gifts and I still feel like I’m forgetting something…I really wish those “mom” calendars, you know, the ones meant for planning each family members activities were made for large broods. Most only have room for five or six family members at most. We have tons more to do after school is out for the break….wrapping gifts, making gingerbread houses, making fudge, Christmas cookies, and then of course Christmas Eve which is filled with so many traditions that I sometimes have to struggle to make sure it isn’t overly structured. We skip our breakfast, lunch and dinner routine in favor of all day appetizers. The kids can eat what they want when they want, and we keep a big bowl of punch on the table. We eat things like cheese and crackers, fruit, veggies, ham, chicken wings, cream cheese and sweet chili dip, finger sandwiches and way more deserts than we should. We re-tell the story of Jesus’ birth, we read The Night Before Christmas, put on special Christmas pajamas and gather around to watch “A Christmas Story” while eating snacks and drinking punch. Then we go outside and leave reindeer food on the lawn and put out our cookies for Santa. Tucking in the kids takes a while because they are super excited and can’t stop egging each other on long enough to fall asleep! The older kids stay up a little bit longer and hang out with us. We play cards or some other kind of game or just hang out and then they go to bed too. After the littles are asleep and the older kids are in their rooms for the night, Albert and I bring down gifts and set them out for the morning. Then, we have a few minutes all to our selves. We cuddle up on the couch and drink a glass of wine or hot chocolate. Mostly we just sit in exhausted quiet, relived and happy that we pulled off yet another Christmas Eve. One year, when we were pregnant with Mia, we opened our envelope that contained the news of her gender. Most years, we just talk and sit together, knowing that the morning will bring lots of joy and chaos and happiness. Then we creep upstairs to sleep for a few hours until the break of dawn when one of the littles has decided that its late enough in the morning to wake everyone up with that joyous line we hear each year “Santa came! Santa Came!” I can’t wait.
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