tag:blogger.com,1999:blog-69308252353603590422024-03-13T18:47:49.160-05:00Sara's BlogSara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.comBlogger30125tag:blogger.com,1999:blog-6930825235360359042.post-15225347342402683752009-06-01T14:13:00.002-05:002009-06-01T14:16:50.995-05:00Just in CaseYou haven't received the information on Bridget's website, here it is:<br />http://www.hope4bridget.com <br /><br />Thank you for visiting and keeping up with our oh, so (too) interesting family.<br />Happy June. Only 8 days of school left- yippee!<br />Love, SaraSara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com0tag:blogger.com,1999:blog-6930825235360359042.post-77362553644651276442009-05-15T14:09:00.004-05:002009-05-18T12:07:46.810-05:00The NewsHi Everyone. We've found out this week that it is confirmed.<br />Bridget has Late Infantile Neuronal Ceroid Lipofuscinosis or a more general term is Late Infantile BATTENS Disease. No one ever quite prepares you for this news and I'm feeling too many things to put them into writing right now. Here are 2 websites to find out more <br />http://www.ninds.nih.gov/disorders/batten/batten.htm <br />www.bdsra.org <br /><br />We have a lot of things in the works.<br />First off, we're in the midst of designing a website for Bridget.<br />Second, we've contacted the Director of Battens Association and the physicians in charge of clinical trials at Cornell through National Institute of Health. There's also another avenue through Seattle.<br />We will have all the information in Bridget's website,<br />so again please stay tuned and be patient.<br />Love and prayers to you and mostly to our angel.Sara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com9tag:blogger.com,1999:blog-6930825235360359042.post-40540032570230316592009-04-30T10:36:00.004-05:002009-04-30T10:44:39.977-05:00Currently.....We are waiting on the final enzyme test to verify that Bridget's diagnosis is in fact LINCL (please refer to the previous blog entry).This should take no more than 10 days to 2 weeks. However, Bridget has clinical presentation and a skin biopsy consistent with this disease. This last test is like crossing our t's and dotting our i's. Plus I imagine we'll need this info once we decide where we'll go for treatment.<br /><br />I've done a LOT of research and am fired up to get going.<br />I will start a website dedicated just to Bridget- she is more than deserving.<br /><br />I wanted to just say thank you for the emails and calls and prayers. <br />I am humbled, but determined and will ask more of you in the future, I'm sure.<br /><br />Please stay tuned for a new website.<br />God Bless.<br />sjkennicott@sbcglobal.netSara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com4tag:blogger.com,1999:blog-6930825235360359042.post-16730284471045828622009-04-21T21:19:00.002-05:002009-04-21T21:34:59.960-05:00The Real GameWe've known for the past month that Bridget has had a sharp decline in motor ability, seizures, cognition and speech. After numerous intricate tests, Dr. Smith met with us today and went over the results. He has had a few other doctors consult with him, as well. As far as all her tests, he's fairly certain that<br />Bridget has a degenerative neurological/chromosomal disorder called<br />Late Infantile Neuronal Ceroid Lipofuscinosis (LINCL). You can google it, as did our doctor with us. This is a good medical website http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=ncl<br />there's also a support group/website http://www.bdsra.org/#<br /><br />Basically, the lysosomes in her cells are collecting the garbage (which is their job), but not getting rid of it. She's lacking a specific enzyme. When you read about the symptoms, one that doesn't actually fit Bridget is vision loss, although she has acute visual sensitivity (hence, the photo sensitive seizures). We are also waiting to have the test for the specific enzyme she is missing. <br /><br />We're going to research the hell out of this as is our doctor. We're going to find the best doctor, hospital, treatment (which could be a clinical trial) there is. <br /><br />Our angel, little bunny girl is doing well right now...gaining weight under the influence of steroids, which continue to help her with motor control. She's having less seizures (which are so very brief, but there nonetheless) and being very vocal about her wants and needs. She's even using some of her signs again.<br />We honestly live one day at a time. Sometimes, life just makes you see things in a whole different light. <br /><br />We, of course, thank you for your kind thoughts and prayers for our beautiful Bridget.Sara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com1tag:blogger.com,1999:blog-6930825235360359042.post-59725179869966552912009-04-13T15:18:00.003-05:002009-04-13T15:55:19.928-05:00Another GameThe blog began with football, but frankly, I'm tired of that game. I am not an athlete, never claimed to be one. Yet, for some reason, I'm still playing games....maybe I'll try baseball now. I was brought up loving the White Sox and married a devout Cubs fan. I root for both- so unlike a Chicagoan, I know. I also sat in the bleachers of countless games my brother played. I know a little bit about this sport, more than football. So, I retire my pads and helmet and take out the bat and glove. Lord knows, I need some wins.<br /><br />Bridget has faced a very difficult month. Her seizure activity continued, the doctors went back and forth with meds and their doses, upping this, taking this away. Nothing seemed to help and she was getting worse. Bridget was losing motor ability and not only shaking, but unable to walk and feed herself. We learned that the 1st Mitochondria Myoclonic Epilepsy test was normal. Not great news. But despite that, our primary neurologist and ped neurologist wanted more done. Why was she deteriorating so quickly? We stayed in the hospital for a few days (Rush) and had continuous EEG monitoring, a skin and muscle biopsy, a lumbar puncture (spinal tap) and took her off some of her medication. I went back with her for a follow up on Mar. 31st. Not wanting to sit around and watch her suffer, the doc prescribed steroids (Prednisone) to help her. Often times this is tried when regular anti seizure medication does not help. Within 3 days (she started last Sat, the 4th), she began to walk again. Bridget took our hands and tried to dance, started exploring her toys and engaging in activities at school. Dr. Smith's words, "Praise the Lord!" She is eating well (hunger is a side effect of the drugs, as well as a host of others). Although it is a minor miracle, we still breathe cautiously. Everyday is new to us and we don't know where it will take us or Bridget. We now await the test results from Rush. Our next appointment is April 20th. We hope to have more information, perhaps even a diagnosis of what Bridget is dealing with. All we know is that the doctor said progressive and degenerative. Not a lot of happiness in those words.<br /><br />We're keeping the roster full, playing the field and trying to swing the bat. We've hit a couple singles despite the unfit weather conditions. The Easter Bunny came and gave us lots of sweets. I feel fat just looking at them!<br /><br />As for my health, I FEEL terrific. However, the drug herceptin has caused me a bit of heart damage. This is not uncommon. SO, no more IV drips for me- I finish early for my regular visits to the oncologist. Luckily, I have no symptoms of decreased output of the left ventricle and only need to be on some heart medication to help strengthen it. I'll have a follow up echo at the end of June. Hopefully, everything will be back on track. I plan to have my surgery on July 9th. I feel a bit sore as the reconstruction continues and am ready to get the next part over.<br /><br />Hope you enjoy the pics. Thank you for always keeping Bridget in your prayers.<br />Let's get some runs!Sara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com0tag:blogger.com,1999:blog-6930825235360359042.post-60080623295204473692009-02-18T21:42:00.003-06:002009-02-18T22:30:12.701-06:00What a Difference a Year Makes...Hard to believe my game began a year ago...Feb. 14 to be exact. Although I found my lump around the beginning of February, the surgeon told me "This is going to come back as cancer" as I was lying on the table getting a biopsy. Earlier that day, I told Julie and Dave not to bother coming, I knew it would take time to get the results back. After hearing those words, however, I asked her if I could just have a minute. You think you're going to hear those words, but when you really do, it's surreal, overwhelming and totally frightening. Of course, Dave and Julie came immediately as I called both of them and sat with me as we decided next steps. They followed me home- closely, probably to make sure I wouldn't drive off the road. We shared Valentine's only with Harrison and Bridget that night. But, Dave actually gave me the red Blackberry, too, which came to pass as the perfect gift for my upcoming year.<br /><br />Well, this Valentine's Day, Grandma and Grandpa babysat as Dave and I went out for a wonderful dinner, bottle of wine and silly date movie. We laughed a lot and it felt like a real date (remember those?). Been a long time since them days!<br /><br />My games are easy these days....a follow up with my radiation oncologist, 5 more appointments to go for receiving herceptin (May 20 is my final day- yippee), a check-up with my oncologist- who gave me a prescription for tamoxifen (an oral chemotherapy drug I get to take for the next few YEARS), AND a reacquaintance appointment with my plastic surgeon. I had an expansion/fill and only have 2 left to go. My skin looks good, but the stretching is sore, especially on the left. By the end of May I will be good to go, but am scheduling my surgery for permanent prosthesis for the summer (that's fake boobs for all you fans out there). I finish the school year June 11, am taking a trip and then will have surgery right after the 4th of July. Recovery from this will not be as taxing as the first, thank God.<br /><br />My days are filled with schoolwork, home life and the mystery of our sweet, beautiful Bridget. She is under the care of Dr. Smith at Rush, but we have also consulted a colleague of his, Dr. Baron, a pediatric neurologist, for further investigation. Both doctors suspect an epileptic syndrome called Mitochondria Myoclonic Epilepsy. We await the DNA blood test to determine if this is her diagnosis. It can be treated with anti seizure medications (which she's already taking), as well as, vitamin supplements to help her cells with the production of enzymes that she lacks. If the blood work comes back as normal, we continue the investigation through a spinal tap and skin biopsy. We hope and pray for the former because the treatment plan is realistic. As for now, we battle, breathe cautiously, wait, watch and pray to God the medicine she's on works and doesn't cause any more side effects. Although they are powerful and miraculous, they are not without fault. Bridget's hardest battle is keeping her balance, aside from controlling seizures, communication, and overall development. Some days are better, esp if it's not a sunny day. Her reaction to flashing sunlight is horrible and we really want this to subside as well. I'll admit - I'm greedy- I want cloudy days. Who would ever want that? A friend told me it figures- since I was so into the vampire/Twilight epidemic.<br /><br />God Blesses us everyday. I sat with Harrison as he fell asleep tonight and thoroughly enjoyed watching him drift off through every even, sweet breath. Bridget laughs, dances to music and is ticklish, Harrison is taking after Dave with a crazy sense of humor, I have good health, a helpful husband (yes, I nag, too) a job and lots of wonderful people in my life. This entry is a bit more serene and I apologize. Just remember...a year can make all the difference. Where will we be a year from now?????? <br /><br />My love to all the devoted followers that are still out there!!!!Sara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com3tag:blogger.com,1999:blog-6930825235360359042.post-35311371538754462062008-12-31T07:48:00.002-06:002008-12-31T09:15:33.969-06:00About TimeAnother game is over and won....radiation is finished!!!<br />Despite my lack of writing, I have thought of it often. Hey, this year I didn't even do Christmas cards! I really feel badly because there is information to share. I've been put through the ringer again with radiation, yet not nearly as bad as chemo or surgery. The residual effects are a really bad looking sunburn on my left side and soreness- like I had after surgery. Back to easy calisthenics. Back to some kind of movement. <br /><br />As when any new year arrives, so do the resolutions. It seems easier this year to say I WILL exercise. I really want to and feel well enough to do so! That goes for Dave, too. He gets lumped into my resolution just because. And then there's the 'eating right' theory. As many of you know, I do like to eat healthily, but there is always room for chocolate. I'll just have to curb my many cravings for sweets and munching on the kids snacks! Everything in moderation, of course.<br /><br />Harrison is reaping the benefits of a wonderful Christmas- playing with his many toys including his favorite remote control tarantula (totally creepy) and many games. Bridget enjoys her bin of play food and containers of any kind. It's the simple things in life. She has definitely been struggling with her seizures and we are under full advisement of Dr. Smith, director of Epilepsy at Rush. He saw Bridget in the office on Dec. 3, and we were in the hospital for a 24 hr EEG on Dec. 17. He is much more assertive and he addresses every nuance of her seizures and development. According to blood tests, Bridget is still within the therapeutic range for the current medications. However, she is still exhibiting seizure type behavior, especially with flashing lights (photo sensitive seizures). We may be bridging over to another med in a week or so. The puzzle continues to take shape and not fit together, but we will keep working and working to get it to fit.<br /><br />In Sydney, it's already 2009. I wish you and your family all the best for a wonderful year ahead. With everything in the world, country, state and home- it's time. Time for renewal of hope and happiness and HEALTH. I know it will come to us. I believe this with my whole heart and faith in God. <br />God Bless you and your family. HAPPY NEW YEAR!Sara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com1tag:blogger.com,1999:blog-6930825235360359042.post-3625663301578617412008-11-29T10:08:00.002-06:002008-11-29T10:35:45.513-06:00Gobble, GobbleIt's turkey time and most importantly, a time for gratitude.<br />Although it's obvious that I'm thankful for many things, there are a few which merit mention. I'm grateful for my sister, Julie. She has undoubtedly been my best friend for a long time and the best responder, whether an ear to listen to my woes, a voice to give me reason or a physical being to help with the situation. I'm grateful for my whole lot of family and friends. It's easy to say thank you to them every day, but know how much you're appreciated. I'm thankful for my children....and above all, my husband, Dave. Despite the fact that he can drive me to tears with his off the cuff, humorous (sometimes sarcastic)comments, I know it's only because he loves me that much. He certainly has a lot to put up with- living with me!<br />I'm grateful for all the wonderful medical care I have and insurance. I'm lucky to work in such an empathetic environment, as well. <br /><br />I am grateful, but also continue to pray, want and need for my Bridget. She is having set backs again and we are seeing our 2nd opinion neurologist (Dr. Smith) from Rush this week. Hopefully, we will get new and different medication that will help with her seizures. Just when we think it's calm....<br /><br />As for my treatment, radiation is well underway. I've had 8 sessions and look forward to 17 more! I complete my daily dose of radiation on Dec. 24, which is terrific timing. I am, as Dave says, ready to throw 2008 in the trash. I really don't think there's a better way to look at it. However, with any hardship- I've learned many valuable lessons, ones not worth trading. I have faith that God meant for me to learn and I have fulfilled this opportunity. So thank you, too, Lord. <br />Love to all, SaraSara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com1tag:blogger.com,1999:blog-6930825235360359042.post-58097311463353120592008-11-11T21:40:00.002-06:002008-11-11T22:27:21.363-06:00Four years ago...Bridget Rose came into our lives. And with the birth of any child, nothing is ever the same. She certainly melted our hearts and continues to do so. Although, there is no forecast or road map with the addition of a child, there is unconditional love. I know I wouldn't trade any day in my life without her. So, looking at life through our 'Rose' colored glasses, I have the right to be sappy today, especially with the roads we've traveled thus far with our daughter.<br /><br />All sentiment aside, I highly recommend the new talking Elmo. It is hysterical- even entertaining for a 6 year old. Our celebration commenced with a pancake in the shape of #4 and concluded with a trip to McDonald's complete with cookies and the play land. It's the simple things in life.<br /><br />The update for my treatment is this...I had my last "expansion" yesterday (until radiation is over)where my Plastic Surgeon decided to double the fill "claiming his space" as he put it. He is truly conservative, but is looking out for the condition of my skin, which could be effected by these rays. So, I begin 27 sessions of radiation on Monday Nov. 17. Big side effects are the conditions of my skin and fatigue. These just go swimmingly with the fact that I returned to work and the holiday season is approaching. Looks like I still have an excuse not to cook until 2009. <br /><br />My game is still good, with steady advances down the field. I know how to score,but just keep playing it safe. My coach gave a pep talk the other night when I was feeling a little about my appearance and abilities. His comment, "Don't worry honey. You're like a FEMA trailer. It's just temporary housing until we rebuild." I really do love my husband.Sara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com1tag:blogger.com,1999:blog-6930825235360359042.post-13532801514325262092008-10-20T11:02:00.002-05:002008-10-20T11:33:53.918-05:00October GoesHard to believe it's almost the end of October. I have literally been stuck in a time warp, especially being at home. It's only been a week since feeling somewhat normal. We even went out this weekend to a party. I honestly can't remember the last time I did that! I'm sleeping on my side (ever so carefully) and have kicked the surgical harness(aka- my sports bra) on occasion. Like I said, as close to normal in a long, long time.<br /><br />Even though the past week brought on a feeling of normalcy, it certainly didn't begin that way. My plastic surgeon decided to perform a procedure (surgical, actually) on my lethargic, naughty left incision. Last Tuesday, Dr. Kouris cleaned the wound and gave me 18 external stitches, which I did not have before. Amazingly, the wound began healing immediately, yet I get the stitches out in a week along with a "fill." As Sheila the nurse said, "a twofer" on that visit (Oct.27). After this 3rd fill, I hope to have one more before beginning radiation. Because once that begins, I am on hiatus for reconstruction. Not to mention, the skin may turn on me becoming less flexible. Time will tell and I still do not have the exact date on the beginning of radiation. IF, and that's a big one, I begin mid November I could be finished by Christmas. That would be the best gift I could get. Well, one at least....<br /><br />Bridget continues to have her roller coaster ride with medication. As we are introducing her third medicine, she's on a temporary daily dose of Valium (VERY small). First off, we can't administer the 3rd medication too quickly because of the side effects. Second, she's had some atonic episodes at school- falls where they happen out of the blue. They have documented at least 4 bonks on the head. That's why we needed a temporary medicine to mellow her out and keep her focused. It has helped, yet I don't think they'll keep her on this long. She's been really good at home- very absorbed in toys and books, eating well and asking/signing for help more often. Dave and I are very happy for her. Yet, as her birthday looms I can't help to think of where she actually is (that and we got very detailed report from the developmental pediatrician). Someone appropriately nicknamed that position Dr. Doom and Gloom. She pinpoints the level of development of Bridget and it isn't very positive....very delayed. Nothing new to us. The reality is with us everyday. We're doing what we can to solve this seizure disorder. This would be the very best gift.<br /><br />Hope you enjoy the pictures of our trip to the pumpkin patch. The kids had a great time and it was beautiful. Like I said, normal. It feels good.Sara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com1tag:blogger.com,1999:blog-6930825235360359042.post-85028588403460905342008-09-29T10:31:00.002-05:002008-09-29T11:27:45.840-05:00On the MendTomorrow is three weeks since surgery. There's a lot to be grateful for....as Dave mentioned- no cancer was found in the pathology report from surgery. Yippee! Yet, like all good news, we must be conservative in our response. I am happy and it's a relief, but after talking to my surgeon, oncologist and now newest doctor, radiation oncologist, I must forge ahead with radiation. As the RO (radiation oncologist) explained, I am a difficult case because of the great pathology report. Yet, when looking at the statistics of my "disease" I qualify for radiation. Four areas he mentioned are: the tumor and outlying areas with disease were 5 cm or greater, there were four positive lymph nodes (they're guessing on this since I didn't have them removed before chemo), the cancer was grade 3 in nature and last, I was Her-2 positive: cancer growth is aggressive when in my body. So those are the stats and I qualify. Not the best news I got on Friday, but it could be worse. I will start my 5 1/2 week stint of radiation in mid October. Reconstruction goes on hold while I do so, and the time line of the whole process is prolonged. <br /><br />Currently, recovery is slow. I guess I anticipated it to be somewhat like having a baby. A couple weeks of slow moving, but otherwise quick to heal. The 6 week hiatus from work in those days was (now that I look back) very much centered around caring for an infant. Well, guess I personally qualify for that role now. I am still slow and sore and 1 of 2 incisions are lethargic in healing. Mobility of my arms is improving, but no rehab yet until I completely heal. I go for weekly check ups with the PS. I enjoy sleeping late, but not on my back each night. I am growing eyebrows, eyelashes and even some hair on my head. The color is yet to be determined, which I'm sure I'll color as soon as possible! Dave is truly amazing in his roles as Dad and Mom. The kids are doing well, our nanny is spectacular and I've had lots of helping hands. I have no pride left in asking for it, that's for sure. When one is in this situation, you just get over it! <br /><br />I'm ready for the new season of football and like that old Packer guy, I plan on being resilient. <br />As always, thank you for reading, thinking of, praying for and just being here for me. A special thank you for those of you who participated in the Susan G. Komen 5K in Chicago on Saturday in honor of me. I am humbled and touched by your generosity.Sara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com2tag:blogger.com,1999:blog-6930825235360359042.post-12222625965481978202008-09-11T15:58:00.002-05:002008-09-11T16:41:46.421-05:00Injury Report 09/09/08So the start player has been injured during the game on Sept.9Th. The medical staff has thoroughly checked out her injuries and she will be put on the Injury Reserve list for the next six weeks. After a blood transfusion (3 units) countless presses of the morphine administration device. Sara has found her way to the recliner chair and the bathroom and later today she will venture beyond the door and walk down the hall. Her crack staff of 15 or so med student visit every morning like a parade kindergartners down the hallway for recess. The Main doctors (Surgeon and Plastic Surgeon) have said everything during the surgery went great and thought Sara would respond well reconstruction process.<br /><br />We were told it would take about a week for the pathology report to come back with the results of the tissue samples they took from the cancer areas during the surgery. That week turned into two days and the results are.... 0% of cancer in all the tissue tested. This meaning Sara is clinically free from all cancer. We on the team almost received a penalty for excessive celebration! Now we will wait for the official review from the doctors to see if radiation will be necessary.<br /><br />We are looking to go home either Friday or Saturday and we will continue the rehab from our home.<br /><br />update by David, manager, water boy ,towl boy, statistician.........Sara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com3tag:blogger.com,1999:blog-6930825235360359042.post-54244756575300959022008-09-08T22:18:00.002-05:002008-09-08T22:21:57.591-05:00Game On!Tuesday, September 8, 2008...Surgery day.<br />The game of all games is about to begin. <br />We'll (well, Dave) will send out an email to some saying I'm out and<br />somewhat conscious. The duration is 6 hours beginning sometime around 8 AM.<br />Bilateral mastectomy with reconstruction- if you haven't read yet.<br />I'll be at Rush Mecidal Center in Chicago. Anxious to get home, I'm sure.<br /><br />Thanks for keeping score with us.Sara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com1tag:blogger.com,1999:blog-6930825235360359042.post-23751816124107273622008-08-24T19:37:00.005-05:002008-08-24T21:06:01.749-05:00Play OffsThe regular season game has ended and not without excitement. <br />It's kind of like the reinstatement of Brett Favre. It keeps evolving.<br />This all started with Deanna's book so I feel it only appropriate I mention their names. Dave is not happy.<br /><br />Chemo finished as of August 15, which in itself is an accomplishment. However, nothing is accomplished easily in this house. After the excitement of Harrison's birthday, having the last chemo, and the hellish experience of Bridget's 48 hour EEG the week before, I got run down. I was put on antibiotics after having a fever and just feeling like crap. Of course during this week, we thought we had hired a nanny that was going to start immediately. Surprisingly she did not and we were left Friday (the 22nd) with 2 more interviews and the need for someone to start ASAP. Luckily, it was a difficult decision, but we hired a young woman (32), Marita, who has great experience and is willing to work with us and ALL of our idiosyncrasies. Thank God. We know know there are many.<br /><br />In retrospect, the game was won by a narrow margin. My tumor is practically non-existent. I don't have cancer anywhere else, with the slight exception of in a few lymph nodes (will be known after surgery). And, with the infusion of herceptin every 3 weeks until next May, there is a much lower risk that cancer will ever come back. That is exactly how I look at it- this year is it and I'm finished with cancer.<br /><br />My surgery is scheduled for September 9. The play offs begin. I am starting the school year- tomorrow, but will take a 6 week leave after surgery to recover. Surgery involves a bi-lateral mastectomy with immediate reconstruction. The reconstruction will take place over 2-4 months with a follow up surgery for my permanent implants. <br /><br />If you've followed the blog, you know that it, too, evolved into updates of Bridget. She had the 48 hour EEG and our neurologist discovered that she not only has abnormal activity on one side of the brain, but both. She now has the diagnosis of Generalized Seizure Disorder. With that comes new medication, just in time. She proceeded to have a seizure Friday afternoon ending with Dave and I administering the emergency medication. Thank goodness we had her neurologist on the phone before then during this horrible experience. She is fine now and is receiving new medication. Always remember our little angel in your prayers.<br /><br />We're hanging tough, although a little beat up from the first game. As you know, after watching the Olympics especially, a good athlete never gives up. I'm the furthest thing there is from an athlete right now (very soft, indeed), but I'm not giving up. There's more game time left and I'm doing it.Sara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com3tag:blogger.com,1999:blog-6930825235360359042.post-20758881109348552742008-07-25T20:39:00.002-05:002008-07-25T21:24:54.150-05:00Three to Go Until the End of the ThirdIt was a hard decision...whether to call this half time or end of the third quarter. Dave voted end of the third. Even though I have only 3 more chemo treatments left, there's still quite a bit of the game left to play. With fuzz on my head, practically no lashes or brows left, and tingling fingers and toes- I CAN"T WAIT! <br /><br />August 15 is my last day and how apropos! It's Harrison's 6th birthday! We will celebrate in style that night. Request of the night...cake! As long as it's chocolate.<br /><br />After meeting my plastic surgeon, I feel very confident about the surgery. Dr. Witt, the oncology surgeon will work right along with Dr. Kouris, the plastic surgeon. After performing the mastectomy, I will then have reconstruction begin with the use of expanders. In order to prepare the skin and pectoral muscle, this is the way to go. Over the course of 8-10 weeks, the expanders will be filled with saline to the desired size. Then I will have a second surgery to insert the permanent implants. Then there's one last out patient procedure to add the final touches. Best case scenerio, December will be it for surgery and reconstruction. The final decision is mine wheter to have the double and I'm leaning that way. Let's face it, who the hell wants to go through this again in their life?<br /><br />One more game time decision is radiation. My oncologist, surgeon and a new radiation oncologist need to confer about this after surgery. They will know then from pathology reports if any cancer is left in me.<br /><br />On a lighter note, Dave and I escaped to London for 5 days. He had a business conference with a his brother, Steve and another Auroroa Aviation Group employee, Chris. The wives and another couple flew over to meet and be tourists. It was exhilirating being a grown up again. Enjoy the picture!Sara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com6tag:blogger.com,1999:blog-6930825235360359042.post-48952861396645649342008-06-29T09:35:00.003-05:002008-06-29T10:19:25.435-05:006 to Go and Chemo No More!Well, I've completed 6 rounds of taxol- the chemo drug (along with herceptin)and have only 6 more infusions to go. Yahoo! Although the side effects have been less harsh than my first set of drugs, they do "strip" me of a few things, namely my eyebrows and eyelashes. Ironically, there is fuzz growing on top of my head. It's stranger than strange how these drugs effect your body. I often feel like a science experiment, (more like a lab rat) waiting for the results to appear (or in this case-disappear). Either way, I am getting tired- literally- of the run down feeling a couple days after treatment and as my energy rises the rest of the week, it hasn't been the same since before this whole ordeal began. <br /><br />Tomorrow, Monday, I visit the plastic surgeon, Dr. Kouris, who will work along with my surgeon, Dr. Witt. They are tentatively planning my surgery for September 9. It feels very imminent and I feel grossly unprepared. I hauled out <em>Dr. Love's Breast Book</em>, which I got the day of my biopsy when my first surgeon actually told me before the pathology report came back that I had cancer. Despite her certainty, I haven't read much on the surgery part of this whole plan. I now get a crash course in reconstruction, saline, silicone, drains, rehab. I imagine there will be more to report after tomorrow's meeting. Although I will search the Internet highway and read my Breast Bible (that's what Dr. Love's book looks like,) I'm counting on the fine doctor to explain my many options.<br /><br />So, as always more news to come from my feeble experiences. Just trying to keep my head in the game and eyes on the summer, esp for my family. I hear <em>The Battle Hymn of the Republic</em> playing somewhere around here.Sara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com3tag:blogger.com,1999:blog-6930825235360359042.post-66853936841908749652008-06-17T18:15:00.002-05:002008-06-17T18:53:44.030-05:00SOOOO SORRY!For all you dedicated fans, my apologies for being so crummy at my postings.<br /><br />THE UPDATE: Score for me, points for the other team, too...<br /><br />I had to postpone the meeting with the surgeon at Rush. Chemo these days takes longer than I anticipated...3 1/2 hours when it runs smoothly. With the pre-meds (the goo I get before the chemo) I actually sleep the majority of the time- it's Benadryl- go figure. Lesson learned- don't try to do too much on chemo day.<br />So, Friday, June 13 I put chemo at one hour earlier and the meeting w/ Dr. Witt one hour later. I now have 4 cycles of this round complete with 8 left to go...YAHOO!!!<br /><br /><br />Dr. Witt was wonderfully patient and thorough with all my tests, scans, etc. Basically, because of the original size of the tumor and to avoid the risk of return of cancer, I will have a mastectomy 3 weeks after chemo is finished. That puts it around the 2nd week of September. I was grateful he actually gave his opinion. That's hard to come by, actually, in the medical world. Now, the real question is whether or not to have both removed. What a wonderful thought to ponder day in and day out during the summer. Dave's vote is double D...Harrison said, "What, we're going to Dunkin Donuts?" More appointments: plastic surgeon, oncologist and lots of research and talks with others who have had this marvelous opportunity. Lucky me.<br /><br />Those are points for my team, however, the opponents get some, too.<br />Bridget was doing remarkably well for almost 3 months. A week and half ago she started exhibiting tremors, shaky spells. Fortunately, we had an appointment w/ the neurologist that week. He says this is not uncommon. It's almost like a seizure wants to come out. So, we increase, ever so slightly, her medication. This, too has it's baggage. Side effects are a bitch. She gets dizzy, sleepy and clumsy. We are in the process of ironing out the glitches. <br /><br />It is my nature to be optimistic, but I have to admit that this is a let down. As any parent knows, you forget about yourself when your child is in trouble. As far as this cancer thing goes, it's ancillary. Bridget is primary. <br /><br />I will keep you posted..really. <br />Love to allSara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com4tag:blogger.com,1999:blog-6930825235360359042.post-39441667308701764642008-05-28T10:58:00.002-05:002008-05-28T11:12:08.125-05:00More pointsThe MRI proved that the tumor has shrunk so much that, yes, in fact, they will have to insert a tag to mark the exact location of the tumor. I will indeed have surgery, if anything, to remove scar tissue that surrounded the initial tumor. Yes- terrific. I am not jumping from the highest mountain, yet, because of 1)I will still meet with the surgeon from Rush to talk about the latest findings on June 6th, 2)After the discussion with the Dr. Witt- I may know more about what type of surgery lumpectomy -vs- mastectomy and 3) I have 11 more weeks or infusion of chemotherapy. I suppose in our world right now, good news is guarded. Don't get me wrong- I am grateful. <br /><br />It is still such a long haul at this point. Think I'm just a little overly sensitive with lack of sleep. Our beauty queen, Bridget is multi-faceted, one being a temperamental sleeper. I never handled lack of sleep well, and this cancer thing confounds the issue. I am very absorbed in Bridgey's needs, too, which makes things more realistic. She will attend 4 weeks of summer school, but I have also scheduled private speech therapy, a couple more visits to the neurologist and the investigation of a developmental and behavioral pediatrician. <br /><br />Six more days of school with 20 reports to write. Any takers?Sara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com3tag:blogger.com,1999:blog-6930825235360359042.post-78162266903284912642008-05-18T17:25:00.002-05:002008-05-18T17:56:25.267-05:0012 Down, 12 To GoWell, I've been absolutely horrible with my updates. Ugh!<br />I could use the excuse that I've been too busy or tired, or my kids<br />take up my time when I'm at home or work is so crazy with the end of the year in sight. Take your pick, that's my excuse. But, as the saying goes, no news is good news.<br /><br />Yes, I am almost (on Friday) done with 12 weeks of chemotherapy. On May 23rd I will begin a new 12 week regiment of drugs called Taxol and Herceptin. Taxol is the chemo drug that is not supposed to be as harsh as the last 2 (adriamycin and cytoxan). I am ssoooooo looking forward to that!!! After feeling wiped out and nauseous, then ok, then completely lethargic, I'm ready for a new reaction. Oh yeah, not to mention total hair loss, metal taste and sores in my mouth, and driving my husband crazy. I think you get the picture! Herceptin is an antigen because I am what's called Her-2 positive. It's a fast growing gene, which makes cancer cells grow (logically) fast. The drug herceptin actually blocks these cells from growing. I will receive this for 52 weeks...a long time, I know. However, I don't mind because it lessens the recurrence by 50%. <br /><br />Here's a cute one...I was tucking Harrison in the other night and I bumped his head and apologized. (H) It's OK, Mom. Your head is a little itchy. (Me) I know, but my hair will grow back, honey. (H) Yeah, when you're done with cancer, Mom. When ARE you going to be done with cancer, Mom?<br /><br />Some days are just like that. I really don't think of it that often. Just trying to make it day to day in life. It's actually a great thing to be caught up in my family, as it takes your mind off most anything. Speaking of, Bridget is doing well and will be seizure free on May 20 for 2 months. A great accomplishment. I have been working diligently on her summer plans including more speech therapy and seeking out a developmental and behavioral pediatrician. Keeping up with her appointments and mine is a full time job.<br /><br />I WILL post again soon as I am waiting to hear about my MRI from last week. Should be interesting...I can't even feel the lump!!! Reading a new book that was a gift- <em>Crazy Sexy Cancer Tips</em>. Doesn't that peak your interest?Sara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com2tag:blogger.com,1999:blog-6930825235360359042.post-11161858931731106132008-04-28T15:40:00.003-05:002008-04-28T15:55:43.897-05:00Touchdowns..on the board!Sorry, it's been awhile. Seems like I am behind on just about everything. After working, going home to be with the kids, picking up the house and doing a load of laundry, all I want to do is sit. But, I have good news...<br /><br />I had an ultra-sound last week and it looks as if the tumor has shrunk so much, I may have to have a tag put in to mark the exact location of the tumor! Wowey!!! My surgeon in Barrington is going to talk to the radiologist today and I will also talk with my oncologist Friday. There is no set answer as of right now. I need to get through my 4th and final (thank GOD) cycle of AC this Friday and then have another MRI to look at all the dimensions of the breast/tumor. I just want to get through next week and have a mini celebration with almost 12 weeks of chemotherapy behind me. Pray for no nausea!!! I also made an appt with Dr. Witt from Rush who is a surgeon specializing in this area. My timing will probably remain as we intended with 12 more weeks of another chemo and then surgery...around September. Will post more once I know! 7 points<br /><br />Bridget had another appt with a neurologist, which went very well. She gave Dr. Smith from Rush about 12 hugs during our visit. He concluded that she is very social! He also explained more about her development and that her expressive speech delay, short attention span and hyperactivity were most likely the result of her seizures. When we get them figured out, she will make some progress. It could still be awhile. We need to continue monitoring her with EEGs every couple of months to determine if her brain activity is calming down (which we actually hope for). Then the neurons in that part of her brain can do the jobs they were meant to, like speak! another 7 points<br /><br />All in all, terrific news. No bites on the house, but that's to be expected. I actually hope not this week- Dave and Harrison are away on the annual fishing trip to Table Rock, MO. They do hope for bites!!<br /><br />God Bless!Sara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com4tag:blogger.com,1999:blog-6930825235360359042.post-50651983037562999862008-04-12T17:02:00.002-05:002008-04-12T17:32:54.729-05:00End of the First QuarterWell, it's just time for this quarter to end...I don't know time wise if it will be accurate, but we're ready to move on! <br /><br />Yesterday was chemo 3 of the first set, a very happy day. It only means I have one left of the really hard stuff (AC). So 6 weeks from yesterday I begin another set of chemo drugs, ones with less severe side effects. I'll fill you in as I go. As for now, I just hope I keep feeling well and don't get these pesky mouth sores or fever(that happened again). I've been fortunate as always to have a great husband, humorous as he is, to take over the kids and house. My coworkers are constantly signing up on a calendar to bring food. I can't remember the last time I cooked! <br /><br />Which leads me to our next situation....we are putting our house on the market! I know many people will say "What is she thinking?" BUT, to my defense, we were preparing this before my diagnosis. We want to get closer to where Dave and I both work, as well as the action and friends (carting/ driving and activities will be easier to coordinate). We also want Harrison to start Kindergarten where he is going to be- so we will not land far away, in North Barrington or East. We want to stay in Barrington as we have ties, family and my job close by. So, the whole moving thing is not that scary or stressful. We have time to wait, a place to stay if we do sell and don't find a place (thanks Mom and Dad)and having cancer puts one at a whole new perspective...everything does not and is NOT perfect!<br /><br />Our very good news is that Bridget had a MRI this week and everything is normal! What a relief and happy piece of information. We'll take it!!!! Now she continues her anti-seizure medication and has a follow-up EEG in May (which was abnormal- the part that makes us know she is having too much brain activity or seizures). But, she is her ever loving happy, energetic self. <br /><br />Not to leave him out, Harrison started T-Ball and is thrilled. He is also counting down the days until THE Fishing Trip, one that I attended almost 30 years ago. Tradition is bliss!<br /><br />That's all for now. Thank you to all who have been in touch. It's really neat, circumstances aside, to hear from so many people- from the past and far away and of course, everyone close by. I love it!<br />Here's my personal email if you want to avoid the post and get in touch sjkennicott@sbcglobal.netSara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com2tag:blogger.com,1999:blog-6930825235360359042.post-73362048263179981842008-03-31T18:43:00.002-05:002008-03-31T19:11:27.037-05:00The RookieWe had a good meeting with Dr. Shah today. Both Dave and I <em>really </em>like him. He was with us for almost an hour regarding the rookie....Bridget. I took copious notes as he answered questions before we even thought or asked. It feels like the beginning, but at best we are much more informed.<br /><br />We are pursuing a MRI to see what is happening in Bridget's brain. This can answer the "why" is she having seizures. However, only a small percentage (15 to be exact) of the whys are answered through this. 85% of the time, doctors do not know why a seizure happens. Which actually, isn't a bad thing. The child will most likely grow out of them then. We are hoping for the latter.<br /><br />We will continue medication and monitor it closely with a repeat EEG (at the end of May) and meet with Dr. Shah again at the beginning of June. We have to give the medication time to really work. The goal is two fold 1) to stop her from having seizures and 2) to retrain her brain not to have them ever again. The average time for this is 2 years. Fortunately #2 is possible in children only. So we have that going for us.<br /><br />This blog is certainly taking on a life of its own. I never expected it to have information about our daughter. "We do not know what we ought to pray for." ROMANS 8:26. Sometimes I think about this at night. Most of the time it's the regular stuff, esp that we get to sleep through the night. Seems pretty normal in this unusual turn in our lives. Sleep tight and God Bless your little ones, too.Sara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com5tag:blogger.com,1999:blog-6930825235360359042.post-21259685181177267932008-03-28T16:35:00.002-05:002008-03-28T16:49:21.360-05:00Stats1. Bridget did get an earlier appt. to Lutheran General w/ Dr. Shah, a pediatric neurologist that we know 2 families have been to and are pleased. We will visit him at noon on Monday, March 31st. The appt. originated before she actually had her 4th and most serious seizure last Thursday. The ER doc consulted with Dr. Shah and she's on meds for now, but will find out more obviously on Monday.<br /><br />2. Bridget will also see Dr. Smith at Rush in Chicago. We used our contact-the COO- to get in there on April 16th. We did want to see Dr. Hydemann, but was given to Smith's office instead... will be checking that out after the beginning of next week.<br /><br />3. After chemo #2, I was pretty wiped out. Thank God for all the offers of help and plans I made for the week (esp since it's at home for the kids and myself). Donna L helped with the kids twice this week, Sharon and her neighbor made me enough food to survive until June, Val cam from Indy to be my caretaker, nanny and housewife, and Harrison had a minute to minute plan of fun. He's really tired today!!!<br /><br />4. Got a blood check today, low, but no worries. My hat collection is complete- thanks to my generous family. That is extremely helpful b/c it's cold up here! And...my oncologist is under the belief that my tumor is actually smaller. Wahoo!!!<br /><br />GO TEAM!Sara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com7tag:blogger.com,1999:blog-6930825235360359042.post-40333815107515516062008-03-19T19:46:00.002-05:002008-03-19T19:58:24.993-05:00Rain in the ForecastOK- so I mentally prepared myself to lose my hair, but this is surreal.<br />My entire life I have had thick, beautiful hair. Now, I'm not one to boast, but it is true. However, at present I feel like an 80 year old woman. I sleep with a hairnet on my head, wake up and "style" my do then spray the hell out of it so that no more will fall out. Dave makes requests from me like, "Can I have the chicken patty with mashed potatoes?" Real funny. I've only washed it 2 times since Saturday and I look at the thinning thinking "Wow, I've aged! Hope people don't notice this bare spot!" Honestly, I just wanted to make it through the week, esp for work sake. We begin spring break on Friday and my wig should be here by Thursday. I have had it in my mind that I could adjust over the time away from school. So, that's just how it's going to be. I think it will rain on Friday (use your imagination).<br /><br />Bridget's update is that she had a abnormal EEG. You wonder what this means. Well, I'm right there with you. Basically she has too much brain activity. Whether this is a seizure disorder, is still under speculation. We are trying desperately to get into a pediatric neurologist before June (I'm not fond of the medical field right now). There are a couple leads in respect of it's not what you know, it's WHO you know. I'll keep you informed. I just want to talk to someone to get answers and help my little girl.<br /><br />Gear up for Easter. I'll be in sweats and on the couch. Will post again after chemo #2 on Friday. <br /><br />Very chillingly yours,<br />SaraSara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com16tag:blogger.com,1999:blog-6930825235360359042.post-77203744368794500912008-03-14T19:42:00.002-05:002008-03-14T20:01:52.016-05:00Is it Over Yet? The first quarter, that isTo say this week has been long would be a drastic understatement. <br />After my first blood check (last Friday) my counts were low, but nothing to worry about. Dave went out of town for work on Sunday through Tuesday. Not the best timing with Bridget's appointment and I have Parent-Teacher conferences Wed and Thurs.<br /><br />Upon having a nice dinner at the Hesselbeins on Sunday, Bridget proceeds to have an upset stomach, Harrison has the worst sniffles and cough and I am home with 2 sick kids. Two nights of up and down and I'm beat. What mother wouldn't be? So we go to bed Tuesday night ready to wake Bridget for her EEG test. This requires you to sleep deprive your child. Uncle PJ at the ready for the 2AM wake up call to help with our firecracker and I'm down for the count. I woke up with a fever, which is not good for anyone, but worse if you have cancer. Dave gets me antibiotics by 4:30 AM and yes, Starbucks opened then, much to Dave's happiness. Now Uncle PJ puts on his cape, flies to Julie's house, hands her the cape and she rushes in to the rescue. Dave and Julie take Bridgey and I fall back to sleep. The test is completed, I miss another day of work and, of course, Parent-Teacher conferences.<br /><br />It is now Friday and all is calm, all is bright. Sorry- wrong time of year.<br />I feel OK, blood counts are really low, but the antibiotic is helping as well as the sunshine and warmer weather. Seven more days until Chemo #2 and waiting, impatiently at best, for Bridget's results. <br /><br />I want to post a picture of my do (while I still have it), but Harrison can't hold the camera quite steady. Will be up asap. If you want to get in touch with me, my email is now listed under links. Do not feel obligated- posts are fun, too.Sara's Bloghttp://www.blogger.com/profile/10319509758536597287noreply@blogger.com7