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Wednesday, December 26, 2007 9:05 PM CST
Hello,
We had an amazing Christmas. It was a quiet Christmas in our own home. We loved it. Santa was good to us all!! We received lots of gift donations to our cause (Band of Parents and The Loneliest Road Campaign). I actually cooked a 20 lb turkey with all the fixins. It was one we will always remember.
We are still waiting on all of Sydney's scan results, bone marrows, and urine results. So far, we just got word that the CT and MRI had "nothng significant" on them. I guess that is good, but I would have rather heard "they look great, no neuroblastome found". Anyway, I have asked for a more detailed report, and a copy of the radiology faxed to me. We also are still waiting on a plan for treatment. Until then, we will just keep enjoying our time together at home.
A very special Thank You to the Webster family and Lana's Love Foundation. They sent a very special gift in the mail for Sydney for Christmas. What an incredible surprise that was, and Sydney is just so happy. For those of you who do not know the Websters, their daughter Lana Beth passed away last year of NB, and she and Sydney became very close friends battling their cancer together.
Thank you again Cindy and Jim, we love you, and we miss you Lana.
I hope everyone has a wonderful new years, and I will update again as soon as I get some news from New York.
Michelle
Thursday, December 20, 2007 3:40 PM CST
New Update: Friday
After a long day, Sydney is resting peacefully. She was sick and vomiting today after her bone marrows, but I think it was due to all of the meds and no food in her belly. We will not have any results until next week after Christmas. So we will fly home tomorrow, and just enjoy the next few days at home with our family.
I hope everyone has a wonderful Christmas, and we can't thank you all enough for praying for Sydney. I will check back in soon.
Love, Michelle, Kevin & Sydney
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Thursday
ok, well, today was Sydney's MIBG scan, and we had a HUGE SCARE!!!!!
There was a very distinct new spot on Syd's right arm. Everything else appeared the same. They repeated the scan on just the arm, and guess what... no spot.
So, we were thoroughly confused, and left to just wonder all day if she had a progression of disease or not. Not only were we stressing, but Sydney was also, because never in 4 years have they just scanned her arms. Anyway, after about 4 long, grueling hours, we saw Dr Kushner. He said that it was an artifact, or a fluke. Maybe there was something on her skin, or whatever, but it is not neuroblastoma. The report said that the scan is stable and unchanged from the November scan. The only area of persistent, stable disease is her upper left femur, but the new bump on her hip did not show up on the scan. That means it is not NB either. It is still unclear what it is, but at this point, no one is worried about it. We are just supposed to watch it for changes. Hopefully, it will just go down on it's own. We are very happy about the results of the scan considering that just 4 hours ago we thought she had relapsed again. What a blessing. Thank you God!!!
Tomorrow, we have bone marrow biopsies, MRI, and Ct . It will be a long day!!
Guess what???? The vaccine is not ready (big surprise, huh?) Last month when we were here, we were assured that we would have a date to start the vaccine. Now, they "hope" it will be available in a month. It makes me crazy, but, oh well, there's nothing I can do about it. It looks like the plan for Sydney will be more low dose chemo until the vaccine is ready, or until she becomes HAMA negative, and can do 3f8 again. (as long as all of her other test results are good).
Thanks for checking in, we have another Christmas party to attend here tonight. There is one every night here, and the kids are having a ball.
Until tomorrow, Michelle
Wednesday, December 19, 2007 8:45 AM CST
hello everyone,
Thank you for all of the wonderful thoughts, encouraging comments, and most of all - the prayers.
We made it to NY safely. We will be headed to our first appointment today after lunch. We will see one of the NB docs, pick up CT contrast, sski drops, urine collection container, access her medi-port, and draw many labs. Then we will head down to nuclear meds to have her MIBG injection.
Sydney is still feeling great, physically. Emotionally, she is still worried about the bump on her leg. It is still the same, since Saturday. No change at all. Our Doctor in Tampa says it's another "Sydney Mystery". She did not know what it was, and she is thankful that we are scanning this week, to get some answers. She said that her best guess would be that it is NOT Neuroblastoma, because she thinks that if it was, it would be hurting Sydney (which it is not). Sydney's response to that (once we left the office) was, "Well, I've had plenty of tumors that didn't hurt at first". I just hate what she is going through. It is not fair for an 11 year old child to have to be so stressed out about cancer growing in her body, especially the week before Christmas. and it's not just Sydney, there are soooo many children in her same shoes right now.
I am asking that you all enjoy the time you have with your children. Embrace them, appreciate them, have fun with them, be crazy with them. Life is not about having a clean house, shopping, working 24/7....It's about making those wonderful memories that you will talk about forever. I do not know what 2008 will bring, but I am so thankful that God has given me these past wonderful 3 weeks with Sydney to just have fun with her. We made so many huge messes, but Oh well, it was worth it for us to just laugh and enjoy each other.
Thanks for checking in, and I'll update again tomorrow - Michelle
Monday, December 17, 2007 4:05 AM CST
Hello,
I am sorry for not updating often, but that just means that we are busy having fun. SYdney is on her winter break already (she finished her classes last Thursday). We spent a lot of last week delivering Band of Parent cookies and making Sydlets. The party on Friday night was wonderful, and a big success. Thank you to all who came. It was also tons of fun. Thanks Maureen, and to Maureen's dad for making that delicious Baked Ziti (without Ragu)!!!
In my last update, I mentioned how wonderful it was that for the first time in 4 years, Syd is on no meds. That is all trus, but what I didn't mention is how scary it is at the same time. Anything can happen at any moment with this cancer, and not being on treatment to prevent it, is just terrifying.....Which brings me to my next point....
PRAYERS ARE NEEDED FOR SYDNEY!!!!! On Saturday night, Sydney noticed a "bump" on her leg. It is at the top of her left femur sort of on her hip. It reminds me of the swelling lumps she gets after a big GCSF shot, only she has not had any shots in over a month. We do not know what this is, and hopefully it is nothing, but Sydney is convinced that it is her cancer growing. She totally freaked out Saturday night. She was crying and saying things that just broke my heart. Sydney is normally not like that, and that worries me. She is getting older, and understands everything. She is wize beyond her years, due to this beast. It is emotionally draining to her, as well as physically. Every time she goes to the bathroom, she checks it to see if it's still there or growing. So far, it is the same. It is not a normal spot for a tumor or mass to develop, but is is also in the same area where there is already that stubborn spot of cancer. We do not know what to think. We will see our Dr here in Tampa today, and we are flying to NY tomorrow. Thank God for that. We will have scans all week, and by the end of the week, we will have answers. I am just asking that you please pray for her. This is a scary time for us.
On a happier note, we have raised over 1.5 million dollars for the HU-3f8 drug that has so much of the potential to prolong our children's lives, or even save some of their lives. It definately eleminates the chance of these kids getting HAMA and having to stop treatment. Yeah Loneliest Road Campaign and Band of Parents for working so hard on this project. Thank you to everyone who made donations, bought cookies, & bought Sydlets. We are almost at the goal, so the fundraising must continue, however, the hospital is so impressed, that they have started the process of getting this drug made and manufactured. It is just amazing what 100 determined parents can achieve even though the odds are stacked against them (us).
That is all for now.... I will update again from NY on Tuesday. Thanks for checking in
Love, Michelle
Monday, December 10, 2007 7:24 PM CST
Hello,
First, let me say that the afro wig in the Halloween picture is not Sydney's Locks of Love wig. HA HA!!! I still do not have a good picture of her with it on, but I will soon.
Things around here have been wonderful. Sydney is on absolutely NO MEDS right now for the first time in almost 4 years. It feels great not to be filling her body with toxic drugs, and preventative drugs, and pain meds, and antibiotics. She feels really good. Her leg pain went away (thanks for all of the prayers!!!!). Right now, she is making clay Christmas Tree ornaments. The Christmas spirit is alive in our house this year, and we are totally soaking it up, and making the most of it.
This weekend, the kids and I were very busy. We went to the Walk through Bethlehem, which was a live Nativity, and it is put on by a church to remind everyone about the real meaning of the Christmas. It was great. The kids just LOVED all of the newborn goats that were running around. They were so cute. We also went to the movies, and a hockey game. Yesterday, the kids made beautiful snowflakes that we hung all over the house. Even though it is still 85 degrees outside, we arebringing winter inside.
Syd had a clinic appt today. Her counts are basically stable compared to last week. She is a little down, but not anything to worry about.
This Friday is our last Sydlet party of 2007. It is at Maureen and Jessics Rose's house. It will be lots of fun, and from what I hear, several of our friends who also have neuroblastoma will be there. We are excited about seeing everyone there, and we have been making tons of beautiful jewelry for the party!!
Thanks for checking in again. I will update again soon!
Michelle
Just a reminder, the deadline for purchasing cookies for kids cancer is Dec 15th.
Wednesday, December 5, 2007 9:44 AM CST
Hello again,
Things are still just fine here at the Sims House. Syd's counts are great (for her), and she is just busy being a regular kid. Right now she is doing school work. She got her report card today from the 1st 9 weeks, and got straight A's. Way to Go Syd!!
Kevin and I are Still Sick with this head cold, but thankfully, neither of the kids got it.
Sydney got her Locks of Love wig in the mail last week. It is beautiful. I will post pics soon. I have been horrible with pictures lately, but I will work on that, I promise. She really likes the wig, but it is a little uncomfortable. She has to break it in a bit.
Syd has been complaining the past 3 days of leg pain. Yes, it is the left upper leg - the part of her leg that has disease, and it is the only area of her body that hurts. I am a little alarmed by this, and praying that it is nothing. I am also anxious for Dec 19th for her scans to see what's goig on in there. Our hopes were that the mega dose of 3f8 would have cleared up the spot in the femur, rather than stir it up. Please keep Sydney in your prayers that this pain is really nothing.
Drew has a track meet tonight, and has been selected to run again. Most of the 6th graders do not get to participate, but this is Drew's second time. And this time,he does not have bronchitus, so hopefully, he will do great!!
Thanks for checking in on us. I'll update again soon!!
Michelle
Friday, November 30, 2007 10:44 AM CST
Hello everyone,
Sorry for the lapse in updates, we have just been busy living a normal life. It feels so good. I have been battling a head cold for the past few days, but thankfully, it's getting much better. We have finally finished decorating the inside of the house for Christmas, and this weekend, we will tackle on the job of the outside of the house. Sydney had a clinic appt on Monday, and her blood counts are finally starting to recover from the last round of chemo. They actually said that we could wait until Monday to come back. Sydney has jumped back into school with both feet. (she's not actually going to school, but she is communicating with all of her teachers and working hard).
For those of you who live in the area, there will be a big Sydlet Party on December 14 (Friday) at 7:00pm. It will be the only Sydlet Party of the season, so if you would like to come out, you are all invited. We have a lot of new items that are not available on the website yet. Just email me if you would like to come, and I will give you directions. Feel free to bring a friend, too.
This weekend will be spent baking cookies, decorating the gingerbread house, and Christmas shopping.
Thank for checking in, and don't forget about www.cookiesforkidscancer.org
Michelle
Sunday, November 25, 2007 11:11 AM CST
Hello,
We made it home safely.
We will spend the next few weeks just enjoying this holiday season. We drug out all of the holiday decorations, and we will have a blast putting everything up this week while we bake cookies and watch Christmas movies.
We will continie to pray for our friends, who did not get to come home as planned, and are stuck in the hospital at Sloan. Jake Miller and Jessica Rose. Please pray for both of them to start producing White blood cells so they, too can get out of the hospital and start to enjoy the season.
Please remember when you are doing your shopping all of the wonderful causes you could be supporting while you shop, like the Loneliest Road Campaign (LR Sydlets), and Cookiesforkidscancer.org (delicious boxes of cookies)
Both organizations are raising money solely for the HU-3f8 treatment at Sloan Kettering which Sydney so desperately needs, as well as hundreds of other children battling Neuroblastoma cancer.
Check out the websites...
www.loneliestroad.org
www.bandofparents.org
www.cookiesforkidscancer.org
Finally, gifts that feel good to give!!!
I also wanted to say thank you again for the Sydlet orders. We are getting them out as quickly as possible, and are having so much fun making them. Please remember that all Christmas orders, must be made by Dec 15th to have a delivery before Dec 25th.
Until next time, Michelle
Thursday, November 22, 2007 12:39 AM CST
HAPPY THANKSGIVING!!!!
Today is the day we give thanks for all of the blessings in our life. We are so thankful today for so many reasons. We are thankful that Sydney is here with us, when almost 4 years ago, we were told that she most likely would not be. We are so thankful that the 4 of us are here together, and we all are feeling good. We are thankful that Syd is off treatment for a few weeks so we should be able to have a wonderful holiday season, celebrating everyday we are given to enjoy. Today is a great day!!!!
Yesterday, we spent the entire day at the hospital. Sydney had a blood transfusion, a pentamadine infusion, and we visited with the doctor. Bad news...She is HAMA positive (we already knew that). Good news, she got more 3f8 in her body than ever before. Sure, it only lasted a week, but it was 60 days worth of treatment due to the extremely high dose. Also, it has given her body a break from chemotherapy, which she so needs. They want us back here in 3 weeks to do a complete work up of scans. While we are here, the week before Christmas, we will decide on the next plan of attack. As of now, if her scans are good (stable or better) we will be one of the first patients to get the new neuroblastoma vaccine. Dr Kramer told us that she is confident enough to say that we will have a start date to plan on when we are here. This is huge, because in the past they have all said "vaccine is coming, it will be here soon, blah, blah, blah". That was said for 2 years. I guess, this time it is for real, and we are thrilled about it. That means that we have a new therapy lined up that does not involve chemotherapy. It is experimental, but unfortunately, the conventional NB therapy just does not work for us. So, please pray about the vaccine for us. We will return on Dec 17th for our scans.
This morning, we went to the MAcy's day parade, It was a lot of fun. We were on the 3rd floor of a vacent office building on Broadway. The balloons, were right at our eye level. We will have a feast at 2:30, then go to see the movie Enchanted later tonight.
Tomorrow, Sydney will get her platelet transfusion, then we will get packed up to fly back home early Saturday morning.
I got a lot of responses to something I wrote in my last journal entry, so I am going to repeat it again. I hope I do not sound like a broken record, but it is all so true.
GIVE THE GIFT OF HOPE THIS YEAR.....Hope for more years to come. I do not want any gifts this year for Christmas. I want everyone to make a donation to the Loneliest Road Campaign, or Band of Parents to give me Hope that I will have another Christmas with my daughter, and many more after that. THE GIFT OF HOPE is the best gift you could give.......PLEASE SPREAD THAT AROUND....I'm sure all parents of NB children would like a gift of hope this year!!!
Until next time, Michelle
Monday, November 19, 2007 9:59 AM CST
NEW UPDATE:
It is with great saddness that I must announce that Sydney is, in fact, Hama positive. A hama test is considered positive when the # is 1000 or higher. Sydney's # is 3000. The past 2 days of treatment have been a waste of time and energy. She is still sleeping off the day. Unfortunately, it is too late to change our flights the day before Thanksgiving, so our plans will stay the same. We will fly home early Saturday morning. Her blood counts were borderline today, so we still need to go in tomorrow for a cbc, and to chat with the dr about what the next step is. As for now, we will take 4 weeks off all treatment, come back here for a complete work up, a hama test, and hopefully a new plan of attack on the cancer. Maybe the vaccine will be ready then and she can have that, or possibly her hama will go away so she can have another round of 3f8. This is why we soooooo need to get that 3 million dollars for the humanized version of the 3f8. Then HAMA wouldn't be an issue, and these kids could continue to have their treatments and clear the cancer.
GIVE THE GIFT OF HOPE THIS YEAR.....Hope for more years to come. I do not want any gifts this year for Christmas. I want everyone to make a donation to the Loneliest Road Campaign, or Band of Parents to give me Hope that I will have another Christmas with my daughter, and many more after that. THE GIFT OF HOPE is the best gift you could give.......PLEASE SPREAD THAT AROUND....I'm sure all parents of NB children would like a gift of hope this year!!!
I will go for now, Thanks for all of the prayers, messages, amd gifts for Syd during these very difficult weeks.
Thanks to Aunt Susan for te books!
Thanks to Aunt Debbie for the bear!
Thanks to Linda Obrian for the Boyds bears.
Thanks to MAry and Amanda Buckler for the foam art
Thanks to Aunt Liz for the Disney blanket"
Thanks to Brenda Cannon for the box of goodies
Everage package is so special to Syd, and she so looks forward to the mail each day. It brings a smile to her face after a long, hard day. Thank you everyone for caring so much!!!
Michelle
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Tuesday, Nov 20
Day 7 is down, and only 2 more to go. Today was pretty much the same as yesterday. mild pain, vomitting, splotchy itchy skin, but no hives. We will get a phone call this evening to let us know if she has HAMA or not. I'll update then.
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Day 6 is over!!
Once again, this day has been unlike any of the previous days of treatment. Today, SYdney had minimal pain. I fact, whenasked if she wanted a dilaudud, she said "No thanks". She made it through the whole infusion and most of the flush before she had pain. Then, she ended up needing the pain meds, but it was nothing like last week. She also had no hives today - at least none yet. (last Monday, the hives didn't appear until the evening). She also had a very high heart rate today, it hung around in the 150's and even hit 170 at one point. Finally, she experienced vomitting with the treatment today. So as you can tell, we neer know what the day will bring - we just expect the unexpected. As far as the mild pain goes, we do not know what to think of that...Is it the begining of HAMA???? It could be, but we pray it is not. They did draw a HAMA blood test today, but we will not know the results until Tuesday night/Wed morning. Sydney is resting and watching tv/sleeping it off. Overall, she feels ok right now, just a little itchy. We will continue the benadryl around the clock for precaution.
Thanks for checking in, I'll update again tomorrow.
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COOKIES FOR KIDS CANCER
The Loneliest Road bike trip is over but our goal to raise millions of dollars is not. The Loneliest Road put a dent in the 2-3 millions dollars needed to be raised to get new treatments to our kids to help save their lives. It was the dedication of 7 families, the backing of 100 Band of Parent Families and the love and support of a countless number of friends and family members that made it a success.
Our next large scale fund-raiser in now underway. The Band of Parents (www.bandofparents.org), a group of 100 families of children with neuroblastoma, are selling gourmet freshly baked cookies for the holidays nation wide. The cookie recipes are from the recently published cookbook, Cookies, by acclaimed cookbook author Sally Sampson. They were adapted for large-scale baking by Jacqueline's Bakery using all the ingredients Sally specified in her recipes. Jacqueline's provided the dough and an army of volunteers will bake, pack and ship the cookies at a commercial kitchen in Brooklyn, NY.
Almost 100f the proceeds will go towards developing treatments for the humanized version of the 3F8 antibody used exclusively at Memorial Sloan Kettering Cancer Center; the same campaign that the Loneliest Road raised money for.
Please take moment to visit the following web site.
www.cookiesforkidscancer.org
Please help us to get the word out to coworkers, clients, friends and whoever else might have interest in saving our children’s lives.
WE ARE GETTING READY TO BEGIN TODAYS TREATMENT. I WILL UPDATE TONIGHT AFTER WE GET BACK TO THE RMD HOUSE. HOPEFULLY, IT WILL BE A SMOOTH DAY WITH MINIMAL SIDE EFFECTS. RIGHT NOW, SYDN HAS A WONDERFUL MUSIC THERAPIST SINGING 'KISS THE GIRL' FROM THE LITTLE MERMAID. SHE LEARNED IT FOR SYD BECAUSE WE DIDN'T GET TO GO TO SEE THE BROADWAY SHOW LAST WEEK. SO SWEET!!!!!
UNTIL LATER, MICHELLE
Friday, November 16, 2007 2:02 PM CST
Hello, Today was another LONG, HARD day. I really do not need to go into the dirty details, but today was somewhere between Tuesday's experience and Wednesday's experiencs. Usually, Fridays are the least painful of all the 3f8 days because the body is getting used to it a bit. However, today was not the case at all. Everyone getting 3f8 was in pain today. The screams were unbearable coming from all of the poor babies rooms. I hate this cancer. Sydney's pain keeps coming in waves. Her back is aching really bad and her chest hurts too. She had lots of hives today, and they were "angry". We are so glad it's Friday, and she will get a 2 day break from it.
The Sydlet Christmas orders are flowing in every day. I am so thrilled that people are giving Sydlets and Sydlet accessories as Christmas presents. It is wonderful to spread the word about this cancer and the need for funding and a cure. Also, the Loneliest Road bracelet orders are also still coming in all sorts of colors. They are beautiful. If you would like to have your orders before Christmas, please place them before December 15.
I guess this will be all for today. Sydney is calling for me to hold heat packs on her painful areas.
Thanks for checking in, MIchelle
P.S. Thank you to Rachelle, Kyle, & Kobi Nicely (our friends from Oklahoma) for the Blendy Markers, drawing pad, and Piglet stuffed animal. Sydney is snuggling with it now. She loves the gift!!!!
Thursday, November 15, 2007 3:37 PM CST
Hello,
God is listening to our prayers because Sydney had another "good" day. Actually, it was not good at all, but in the world of 3f8 treatments, it was all normal.
She starts her day with meds and pre-meds...
Neurontin, Diflucan, Folic Acid, Megase, GM-CSF shot, Claritin infusion, zantac infusion, visteral infusion,
Dilaudud push, Zopinex breathing treatment, and a bolus of fluids.
She gets all of that one hour before the 3f8 starts. Then, she usually gets another 3-4 dilaudid pushes, 3-4 benadryl pushes, another zopinex nebulizer treatment, and another infusion of visteral during the treatment.
All of this makes for a good day. Sydney is pretty much a zombie all day, and is in and out of a sleeping/drowsy state of mind. Today, she had a lot of pain in her mid-section but she handled it like a champ. SHe used a lot of ice packs but stayed calm today. She heard her room mate say that it hurts her when Sydney screams. (She is around 5 years old and receives the 3f8 also, only she gets it at the regular dose, not the 10x the dose). Anyway, I think that might have had something to do with Sydney's being so quiet today.
In the midst of the pain, the hives started poppong out all over, but mostly on her face and arms. They were not the "angry hives" today, so they did not burn, but they did itch a lot. Her bottom lip started to swell, and then it became huge!!! Kevin told her that she looked like "BUBBA" from the movie Forrest Gump. He kept asking her to recite how many different ways there are to make shrimp...Shrimp stew, shrimp salad, boiled shrimp, baked shrimp, shrimp creole.....You get it, right?? It was so funny. Then when we took Syd to the mirror to see herself she couldn't believe how big it was.
The good news was that everything went away in a timely manor, and she is resting comfortably here at the RMD house. We all took a nap today, and it was good to be able to rest in peace for a day without worrying that something bad was going to happen to her.
She remains on benadryl around the clock, and dilaudid. She continues to have splotchy hives and residual pain in her neck, hands and feet (neuropathy). She's a trooper, and we are so proud of her. Only 5 treatments to go (Thanksgiving is a day off).
Her blood counts are somewhat recovering. Her platelets are hanging out in the 20's this week, just above transfusion level. Today they were 27, yesterday they were 24. I think they are on the upswing!!!
We are looking forward to the weekend to just be able to "chill out" and get Drew. Maybe, by Sunday, Sydney will feel good enough to go out and do something fun for a few hours.
Thanks again for checking in, and please continue those wonderful prayers... They are working.
Love to all, Michelle
Wednesday, November 14, 2007 4:32 PM CST
Hello,
Today's treatment was better than yesterday's. We were not afraid the whole time, like we were yesterday. She did experience a lot of pain, which is normal. And, she also had the hives again, however, they were not even half as bad as yesterday. Sydney did require 4 dilaudid rescues and 5 benadryl rescues. Everything seemed to be much better controlled than the previous 2 days. We were much better prepared mentally for something worse, so it felt like a releif today.
We left the hospital around 3:30 this afternoon, and Sydney is pretty comfortable now, just laying in bed watching Harry Potter 4. She is having some neuropathy pains in her hands and feet, also some residual pain in her neck and head. NO hives right now!!!! She ate a big plate of manicotti and some salt & vinegar chips. Overall, I would say that it was a decent day (so far, knock on wood)!!
When we returned from the hospital, Sydney had 4 packages to open. She was so excited, and wants me to say thank you's for her....
Tracy HInson, my wonderful friend, thanks for the Wacktivity book. What a hoot!!
Pam Hubbard & family, thank you for all of the beautiful butterflies. Sydney loves them, especially the one with her friend, Lana Beth's name on it.
Becky ??? (no last name on package) - thank you for the very cute and cuddly FAO Shwarz teddy bear.
Secret Pal has struck again...Sydney loved the unicorn, personalized name tag, and hello Kitty tooth brush.
Also, to Noah's Mommy, we all have had so much fun in the room playing the travel scrabble game you sent. Thanks also for the "official scrabble dictionary", we had many challenges going on, and many made up words.
Drew is running in his first track meet for middle school tonight. We are bummed that we could not be there. My mom is recording it for us. Drew is suffering from bronchitis right now, but my mom is taking great care of him. He went to see his pulmonologist today and got 2 shots, a round of steroids, a round of antibiotics, and has been put on 4 nebulizer treatment a day. His asthma has flared up since the cold front in Fl last week. He is flying here to NY (all by himself) on Saturday to be with us for a week. I can't wait to see im. We miss him so much!!
That's all for now. Thanks for checking in again, and for all of the very nice messages. By the way, since all of the stagehands are on strike, here in NY, we were not able to go see the Little Mermaid on Broadway. Sydney was soooo looking forward to seeing it, it was supposed to be tonight. Oh well, maybe another time!!
Tuesday, November 13, 2007 6:57 PM CST
Wow, there were so many wonderful and encouraging guestbook entries from yesterday. Thank you all for your support and prayers. I guess I will start this update from where I left off last night. Remember I was typing as SYdney was sleeping soundly yesterday evening.....
Well, she woke up at 6pm and said that her skin was burning. We took off her shirt, and she was covered in a rash/hives. We gave her benadryl and dilauded for pain and we waited. As the hour drug by, we watched the rash move all over her body, her belly, her back, legs, face. It never went away, just kept moving around, burning, and growing. We gave her a dose of Visteral at 7:30pm, but that also did nothing. Her upper lip started to swell up, and that's when I began to panic and start packing a bag for the hospital. Of course, she was admitted for observation all night.
When we woke up this morning, the hives were all gone, and she felt great. We were discharged to the outpatient side of the hospital to begin another treatment. We were all hoping that day one was the worst, and that things would get better today......WRONG!!!!!
Today was so much worse for Sydney. We gave her the pre-meds, and began the infusion. We waited and waited, nothing happened for about 15 minutes. Then, all of a sudden, her skin just started to bubble up with hives. They were "angry hives". Thats what our NP described them as. They came up all over her body so fast, and we could not contro; them. Syd screamed and screamed. Nothing made them feel better, not ice, heat, or anything. She ripped off all of her clothes and just layed on the bed screaming, as the nurses pushed different meds into her to get it under control. Sydney was yelling things like, "Im on Fire", "It's burning my skin off", and my favorite, "You are killing me". She was miserable, and so was everyone else. We had almost the whole NB team watching, and it was pretty scary.
Finally, we got it all under control and she passed out. We rested for 2 hours and thought it was all over. Then wave 2 came. She lifted the covers and the same "angry rash" was all over her legs, bottom, and private area. She could not sit, lay, stand, or do anything without being in pain. It took about 45 minutes to get that under control.
By this time, Kevin and I were ready to get admitted with her. We were afraid to bring her out of the hospital. We sat around waiting for our Drs to come in and tell us where to go. Instead, they came in with 3 new meds to add to the coctail she's already on, and sent us back to the RMD house. It's 8:15 now, and so far things ar ok. She is having residual pain from the 3f8 in her neck and feet. She also has the rash on her back but right now it is not burning her. We will be giving her meds every 3 hours to try and stay on top of everything, and we will go back in tomorrow morning for day 3 - only 8 more days to go!!!
Please continue to pray for Sydney. I am a nervous wreck, and she is terrified to go back tomorrow. In fact, today is the first time in 4 years that Sydney has said "I do not want to go back for treatment." It just breaks my heart!
Until tomorrow, Michelle
Monday, November 12, 2007 4:08 PM CST
Hello,
Day one is over!!
I wish I could report that everything went just peachy, however, that was not the case. It was such a hard stressful day for Sydney. The anticipation of the treatment started to get to her last night. She was very worried and nervous about the pain and possible reactions. She got no sleep at all. She held my hand all night and just wanted to be reassured that everything was going to be ok.
When we got to the hospital this morning, we ate some breakfast and started to do a math page to get her mind off treatment. They gave her an infusion of visteral and that put her to sleep immediately (which was a good thing). I gave her the GMCSF shot, and we waited for the treatment to begin. We waited until around noon, and then they came in.
First, it started with 10cc's of a "heated up " version of the 3f8 antibody. They heat it because it helps to block the pain receptors in her body to deal with the gigantic amount of 3f8 to come. They also gave her another infusion of visteral and a push of dilaudid. About 10 minutes into the treatment, the pain began. It was really, really bad. She just looked at Kevin and I and screamed. We were helpless. Her heart rate dropped, and dropped, and dropped. They could not give her as much dilaudid (for pain) because of the heart rate issue. So, she just had to suffer through it. About 10 minutes into the pain, she started screaming that her throat was closing, then she said she couldn't breathe. Sure enough, her throat was closing. She got a big push of benedryl, and we waited. Then she had 2 breathing treatments of zopinex to help open everything back up in her throat. Our nurse had the epi in her hand, just incase the other stuff didn't work. But, thank God, it did. She used up 2 boxes of cold packs to ease her pain. She had pain in her stomach, back, neck, and head. Nothing made it go away. It is just so awful to watch your child scream in pain for such a long time, and be able to do nothing about it.
Finally, it was all over, and Sydney passed out. She has been like a rag doll ever since. She is so out of it. She can not speak or move without her head flopping all over the place. She is sleeping soundly, here at the Ronald House right now. We gave her a push of dilauded before we left the hospital for chest pain, and some tylenol for a headache. We are hoping that the pain will subside, but we were told that she will most likely have "waves of pain" all night long.
We are all so exhausted, physically and mentally. It took 5 of us today, during the infusion, to meet all of her needs. Only 9 more days to go.
Thanks for checking in on us, and please pray for the week to go smoothly. Also, even though the pain is so awful, we know that means NO HAMA!!!! That is important to keep praying for - we do not want to get HAMA.
Until tomorrow.....
Saturday, November 10, 2007 11:13 AM CST
Hello,
I attempted to update yesterday, but the computer battery died, and I lost it all!!
Today, with a fully charged bettery, I will send out a quick update.
All of Sydney's scan and BM results are back.... BM - Clear (NED)
Urine - normal
MIBG scan - left femur disease only
CT scan - questionable lymph nodes, but thought NOT to be cancer
We are pretty darn happy with these results. I pray that those lymph nodes go down, because the thought of them, makes me sick. But I am happy that our docs are not concerned.
A low key weekend is ahead and then the nightmare of next week begins
I will update again later,
Michelle
Wednesday, November 7, 2007 9:12 PM CST
Hello,
Today, we spent all day at the hospital, pretty much just waiting around. She had a cbc, needed a blood transfusion - but didn;t get the blood until 3:00pm. We left the hospital at 6pm in the freezing cold, dark night. - I'm being dramatic.
Anyway, we signed our consent forms for the upcoming treatment next week. Everyone is very concerned about doing it. We all remember when Sydney had the horrible allergic reaction 3 years ago to the same treatment in combo with the GM-csf shots. Well this time, it's all the same, only 10 times the amount. Our 3f8 nurse said that she's not leaving Sydney's side, and they will be prepared with a "crash cart" outside the room.
Sydney had her first dose of GM-CSF today. It's just a shot, like the GCSF shots she is used to getting. They were so worried about this shot, so they premedicated her with an infusion of IV Visteral first. Then, they monitored her for an hour after to make sure there was no crazy reactions from it. She had a welt and some mild swelling, but it was all fine. We will continue to give her the shots for 5 days, then double the dose for the following 12 days during her treatments. After the 2 weeks of the antibodies, we sill test for HAMA. If there is no HAMA, she will repeat and do cycle 2 on December 10 for 2 weeks. Then, the protocal is over and will be successfully completed. To be honest, they are expecting her to get HAMA from her history of having an early HAMA. I guess we will have to wait and see.
She was borderline for platelets today, but we ran out of time. Our plan is to go back on Friday to get them, but she has a bloody nose right now, so we will probably end up going back tomorrow for them.
Drew is flying to NY on next Saturday. I can't wait to see him!!! Tomorrow night, we are going to Tavern on the Green for dinner and then a horse carriage ride through Central Park. It should be lots of fun, but we will freeze. The high is only 45 degrees tomorrow. The RMD House has arranged the trip there. Next week, we will sign up for a trip to Broadway to see the Little Mermaid. I am praying that Sydney will feel up to going, as she will most likely be in extreme pain. They keep warning us that it will be so much worse than she experienced before. If you have been following Syd over the years, you remember how painful these antibodies are for her. I can not even imagine it being worse. I think I have pictures posted from some of her previous treatments back in the Journal (October - December 2007).
Jessica Rose is stable. Please continue the prayers for her. They might try to take her off the ventilator tomorrow to see if she can try to breathe on her own. They are still not sure exactly why she coded during her 3f8 treatment yesterday, but right now need to concentrate on getting her better.
Thanks for checking in on us again. We are in room 706 here at the RMD house. These next 2 weeks will be difficult, so if you would like to send Sydney any "pick me ups", the address is posted on the bottom of the page. She would love to know that people are thinking about her. It's hard to be away during the holidays.
Until next time, Michelle
Tuesday, November 6, 2007 9:10 PM CST
We have a plan....
We actually have not spoken to our doctors today, but we did get an email from Dr Kushner after the NB team meeting.
Apparently, Sydney is going to start Heat Escalated, High Dose 3f8 Antibody with GM-CSF. Please do not get this confused with "Hot 3f8" It is not the same protocal. It is also different from the previous 3f8 protocals Sydney has been on in the past.
Hot 3f8 is done inpatient and has liquid radiation attached to it, making it "Hot". It is a one day infusion, then it's done. (that is NOT what we are doing)
Regular 3f8 is an infusion each day for either a week or two weeks - out patient and the cycle is repeated each month. (Not what we are doing)
What we are doing is this.... Sydney will get a small infusion of 3f8 that has been actually heated up. The heat is supposed to block some of her pain receptors. Then, she gets a mega-dose of 3f8 (ten times the regular amount). She will get it for 2 weeks. When she is finished with the 2 week cycle, she will have had as much 3f8 as 10 cycles of the regular dose. It will be repeated each month until she gets HAMA. It is good because she will be able to get so much more of the 3f8 than she's ever had before combined. The bad part is that the pain will be much more severe and linger longer. I am told that the neuropathy is extreme in the older patients, and we will have to deal with that pain too. The doctors are a bit concerned about the allergic reaction SYdney had about 3 years ago when she had the combination of 3f8 and GM-CSF, so she will be monitored closely during the treatments and after.
Sydney is actually happy about the decision to do this treatment rather than more chemo. She said that she would rather have temporary pain than be sick for weeks from CHemo. She is excited about her hair getting to grow back, and not having anymore blood and platelet transfusions - when her counts recover. It may take several more weeks before that happens. Most of all, she is happy because she will get to return to school on her weeks off treatment.
Her MIBG scan looks good!!! YEAH!! The only positive spot is her left femur. We have not seen the report yet, but that is what Kushner said in his email.
We still have logistics to work out with Drew, but I think he will stay with my Mom for an additional week, and then fly to NY to be with us the week of Thanksgiving. My Mom will be returning to work so we are ironing out the transportation issues in getting him to and from school. It will work out. I am missing him terribly. I hate that we all have to be apart, but due to the severity of Sydney's treatment, Kevin and I both need to be here for her and each other.
We are meeting with the doctors tomorrow, and will have all of the specifics worked out and maybe other test results, and of course, her blood and platelets\ transfusions.
Pray please for Jessica Rose, our good friend from Tampa. She had a horrible reaction from her 3f8 infusion today, and is in icu in critical condition. PRAY, PRAY, Pray for her!
Thanks for checking in, Michelle
Monday, November 5, 2007 1:49 PM CST
Hello,
It's Monday afternoon, and everyone is snoozing! Sydney had her bone marrow biposies today. When we got to the clinic and had her blood drawn, her cbc showed that she only had a platelet count of 16. So, she got a platelet transfusion as they did the bone marrow procedure, so that she would not bleed to death on the table.
As for our MIBG results..... we still have none. The report is not in the computer yet, so we will have to wait. Dr Kushner said that they looked ok to him, but he is not a radiologist, so we have to wait for the report. He did say that he did not see an additional spot in the leg, and he also said that the 2 spots in the neck/port area were in the line. So that's all good. But he also said that it was hard to tell what was going on in the chest area, so we will just wait for the official report. They should have it later today, but we do not have to go back to the hospital until Wednesday.
We still do not have a next plan of attack on the cancer. We know that we need to give Syd's body a break from chemo, but that we can not stop treatment altogether. It is likely that we will do some type of immunotherapy for a while instead of chemotherapy. We are unsure if we will go ahead with the 8h9 imaging study that we came here to do, because it could cause Sydney to get a HAMA and prevent her from doing any other therapy. We have a few options, but they will require us to be here in NY for the rest of the month. We are really not sure what to do yet, and a lot of it will depend on the scans, urine, and BM results. We are missing Drew terribly, and do not know what will happen with him if we have to stay longer. My mom took off work this week to care for him before and after school, but she can not do it for the month. We might fly him here to be with us, but that would mean missing 2 weeks of school. We have a lot of big decisions to make. Please pray that we make the right ones.
I will update as soon as we have some news.
Kevin did a fantastic job in the marathon. He looked great. I will post some pics when I get a chance.
Michelle
Sunday, November 4, 2007 7:23 AM CST
MIBG scan was yesterday.......... Kevin and I both got to sit in and watch. We do not have a report on it until Monday, but Kevin and I both saw different things. That's how we are. We can both be looking at the exact same thing, and see it differently. I saw 2 spots in her femur (the one that is always there, and a new one below it. Kevin only saw the one. I pray that his eyes are right. There were also 2 questionable spots in her chest. One is up in the lower right side of her neck, and the other one is just above her port (which is in the middle of her chest). The spots were definately there, and very bright, however, they are questionable because her line went right through them. Sometimes, when they give the injection, then flush it through the line, there are globs or left over tracer that can sit in the line. If it's there, it will light up. We are thinking (praying) that those spots are just left over tracer in her line. You could obviously see the line lit up and it went right through both spots. We just do not know if there are spots behind her line, or in it. Does that all make sense?? The positive node which showed up on her CT scan is also in that same general area, so we will just have to wait and see what the final report will show.
Sydney seems to have caught the bug that Kevin has. We thought it was food poisoning origionally, but now believe that it is a stomach bug.
1. because he still has it
2. because Syd has it now
She does not have it nearly as bad as Kevin (thank God) but she is still making frequent trips to the bathroom.
Kevin will begin his run in about an hour. He left this morning around 6am to get out there. It is about 45 degrees, and he is used to running in 90 degree temps at home. He still feels pretty bad, but has taken immoduim and tylenol. Please pray that he will make it and feel ok. He is dressed in a Loneliest Road costume. He has on a LR shirt, and a black and gold cape that says www.loneliestroad.org, and a zoro mask. He also is carrying a huge poster that reads..
HEROS WANTED: Help save my daughter and other children with NEUROBLASTOMA CANCER
Then it lists the websites for the LR campaign and the Band of Parents.
He is hoping to get noticed, and spread as much awareness as possible. He is running with his buddy Rich Block, who has on the same outfit, and is carrying another poster very similar.
Tomorrow, Sydney will have bone marrows.
I'll update later, thanks for checking in, and please keep the prayers coming for all of the children here who are suffering!!
Friday, November 2, 2007 4:41 PM CDT
Hello, We made it to NY safe and sound yesterday. It was a rough trip, as Kevin was suffering from some type of food poisoning, and was sick the entire day. We also had "those people" in the row in front of us who all had their seats reclined (in our laps) and we were all so uncomfortable. We made it to the RMD house, went to lunch, and then headed to the hospital for a "quick appt". Well, that turned into a 5 hour appt because Sydney needed blood and platelets. We left the hospital at 7pm after her blood transfusion. We did not have time for the platelets, so we pushed them back to this morning.
Today, we got up at 6:45am so Sydney could drink her lovely CT contrast. Then we went to the hospital for her CT scan. After that, we went up for her platelet transfusion. After that, we went to nuclear med for her MIBG injection. Then, back up to the peds floor to get deaccessed, and get the results from the CT scan.
We got to meet with Dr Cheung for aout an hour, and we had a great talk with him. He is the brilliant mind who developed the 3f8 antibody, and who is also behind the HU3f8. Anyway, he went over Syd's CT results, and basically, she is stable. The lymph node behind her trachea is the same, she has a collapsed esophagus, and she still has the positive spot in her lower left lobe (lung). Nothing new - just stable. We were hoping for an improvement, but stable is much better than progressing. Keep in mind, that this is JUST the CT scan. The MIBG scan is tomorrow, and that is the scan that is specific to neuroblastoma, and really, is more important. Also, her bone marrow biopsies are on Monday.
We have some decisions to make next week about the next phase of treatment. We talked about some things that are possible with Dr Cheung today, but I do not want to get ahead of myself in this journal entry, We need to wait for all of the results to come in first. We should have a "plan of attack" by next Tuesday or Wednesday that does NOT involve chemotherapy. Syd's body can not tolerate it any longer. Her low counts are putting her at too many risks.
Kevin will be running the NYC marathon (26.2 miles) on Sunday. GO KEVIN!!!!! Please pray he starts feeling much better and gets himself rehydrated!! Our friends, the Monroe's, found out that their daughter Marissa, DOES have a relapse. It is not a false positive. Also, the Oughtons are buried Grace today. Such a tragedy. Lots of prayers are needed!!!!
Until next time, Michelle
Wednesday, October 31, 2007 1:34 PM CDT
HAPPY HALLOWEEN!!!!!
Sydney is soooooo into halloween this year. I think it is mostly because we are actually home this year. All of the previous years, we have spent the holiday in NY. It just worked out that way, but we are all so happy to be home. We almost didn't make it - as we are flying to NY in the morning. She is dressed up as a Hippy, Drew is a clown, and Kevin and I are both Nerds (big stretch, huh??)
Syd is feeling so much better, but her blood counts are till really bad. She is at high risk for infection, and she is needing platelets every 2-3 days and blood once a week.Hopefully, things will be on the upswing soon.
It is with a very heavy heart that I must say that Grace Oughton earned her angel wings on Monday. I know many of you already know that, as we are all like one big family. It is so sad, and unfair. Please pray for Alec and Crystal - her parents, and her big brother Landon. We watch our kids fight so hard, we, ourselves fight so hard to get funding, and it just feels sometimes like we are spinning our wheels and going nowhere. Grace was an inspiration to everyone who had the opportunity to meet her. She was just precious. You can visit her site, at www.savegrace.com This disease is just unbearable sometimes. Grace was NED just 4 months ago - unbelievable!!
Sydney had a platelet transfusion today, and is borderline for blood. We opted to wait and have it in NY, since she didn't want to spend the entire day, today, in the clinic getting transfusions. I don't blame her. She lost a tooth last night.
She is having the all dreaded Ct scan and MIBG scan on Friday and Saturday. Please pray for improvement. She had some pain in her side yesterday, and leg pain over the weekend. I think the leg pain was from the flu shot, because it went away. It was so sad because she didn't tell me about the leg pain until hours later. I asked her why she kept it quiet, and she said that she was worried that her cancer was back. It is such a shame that an 11 year old girl automatically thinks of cancer when she has a pain. She should not have to be worried about that. These kids are so strong - so much stronger than I could ever be.
Please keep the prayers coming this week and next. We might have some big decisions to make depending on these scans. Also, continue to pray for Jake Miller and his family. They made it to NY, and are scanning. Marissa Monroe needs your prayers, her relapse could possibly, maybe be a false positive. Lets hope it is. They will find out this week. There are just so many families who need your prayers right now.
I am happy that people are buying the LR bracelets in other colors. They are fun to make, and look so beautiful. There are going to be some very happy people this Christmas with their gifts....THE GIFT THAT KEEPS ON GIVING!!!!!
Until next time, Michelle
Thursday, October 25, 2007 1:49 PM CDT
Hello,
I really have no news to report, I just thought I would send out a little update.
Sydney is still battling the effects of this round of chemo. It just seems to have "hit" her harder than the previous two rounds. Although she is feeling better compared to last week, she is still having challenges.
Head aches, dizziness, minor stomach issues, fatigue, and now hair loss. Yes, that is right, the 1cm length hair on her head, started coming out. She just got out of the shower, and is just about completely smooth and bald again.
Of course, she is devistated by this. She feels like she just can't catch a break with treatment.
Tomorrow, we will be at the clinic - pretty much all day. Syd will be getting platelets, maybe red blood too, pentamidine breathing treatment, and a flu shot.
We are hoping to have an uneventful weekend full of NOTHING TO DO!!! We all need the rest and recharging for next week's trip to NY.
Thanks for checking in, and if you didn't notice the new ad for the LR bracelet, check it out above. We still have a TON of money to raise, so I am offering it in all of the colors. They will make great Christmas presents - It's THE GIFT THAT KEEPS ON GIVING!!!!!
Monday, October 22, 2007 6:38 PM CDT
this is our second week out of chemo, and I think we have a record of transfusions. 2 blood transfusions and 6 platelet transfusions. That's a whole lot. Sydney is needing platelets every 2 days (M, W, F, M). As I have said before - Her Marrow is shot and is just not working quite like it should. We will probably have a few more weeks of this, and then she will start to recover from the chemo. (It took 6 weeks to recover from her last round).
The good news is that she is feeling a lot better. She is eating very small amounts, and only hitting the toilet about 3 times a day compared to the 10 times a day last week. She is taking baby steps. She has been having dizzy spells throughout the weekend and today, but her dr thinks it is because she is still a little bit dehydrated. She has promised to drink, drink, drink so that she will no longer feel this way.
Over the past ouple days, we have learned of more bad news in the NB community... Marissa Monroe has relapsed (her dad Randy rode in the Loneliest Road). So far, that is 4 out of the seven kids who have relapsed - Sydney, Grace, Jack, and Marissa. This is unacceptable!!!! It is also so unfair. Please pray for the families.
Also, our good friends the Millers got some bad news... Their son Jake (I have mentioned him many times before over the years) has relapsed again for the 5th time I think. He is 13 and has been batting this beast for over 5 years. His marrow has been clean for 3 years, and they just found out that it is back in the marrow. One week ago, they thought everything was great because he had a clear MIBG scan, then today, they were slapped in the face with this news. It is awful how this disease just sneaks up out of nowhere.
It is so hard to keep a positive attitude when almost everyone we know is relapsing. I can only imagine what these kids feel like knowing what's happening around them, and what could happen. We pray so hard every day for miracles, and for the cure to be found. We are exhausted from fighting and asking, begging for help and funding. I just wish that something positive and wonderful would happen, and soon, before time runs out.
We are flying back to NY on November 1. Sydney will have a few days of scans followed by an imaging study being done at MSKCC. Sydney will be the 3rd or 4th child to do the study. They are testing a new antibody called 8h9 to see if, when injected through the port, if it wil travel to the tumors highlighted on a scan. We are interested in the study because this same antibody (8h9) has been successful in patients who have relapsed in the brain, when it was injected into the brain. Our hope is that when it is injected into Sydney, the antibody will travel through her body and camp out in her "hot spots" like her femur and some lymph nodes. We do not know if the antibody will combat the tumors, this is just an imaging study to see if it will travel to the tumors. If the doctors can prove that the 8h9 does in fact go to the tumors when injected, they can then move the study to a clinical trial and play with the doses to combat the tumors. This can not move forward until many more children volunteer to do the imaging study, like we are doing.
Once we get our scan results, we will determine the next plan of action. Please pray for improved scans, or better yet, NED (No Evidence of Disease)!!!!
Wouldn't it be nice if everything was clean and clear of disease??!!!
Thanks for checking in with us, and please pray for all of our friends who have a rough road ahead due to relapse or a major progression of disease.
Michelle
Sunday, October 14, 2007 6:17 PM CDT
Thursday -
We finally took a turn in the right direction today!!!! Thank you for all of the prayers, they seem to be working. Syd had more energy today, and actually ate a few times today. She had some dry cereal this morning, a pudding cup and some more spaghetto-o' for lunch, and some pot roast and a biscuit for dinner. I am so proud of her, and it looks like we are over the hump of this round of chemo. We will still go to clinic tomorrow for possible platelets, but I think we are done with the fluids!!!!!!
Please say extra prayers this weekend for the Oughtons and their daughter Grace. Grace's dad, Alec, was a rider on the loneliest road. She needs your prayers and a miracle! www.savegrace.com
Also, our little buddy Jessica Rose needs prayers today. She was admitted into the hospital for fever and pain.
Until next time......
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Wednesday -
another LONG day at the clinic. We arrived at 9:30am and walked out the door at 5:30pm. SYdney was feeling really yucky when we got there, so they started her on IV fluids again. They checked her CBC, and she needed Blood AND platelets. So, we had a platelet transfusion followed by a blood transfusion. She slept a lot of the day. Her electrolites came back low on Sodium and potassium. She did try to eat lunch, but about an hour after, it all came back out. However, it was the only time she was sick all day. The doc is very concerned about her nutrition, or lack of it, and suggested AGAIN that she be admitted to the hospital. We are really trying to avoid that. She has one more day to start eating, or she will be admitted into the hospital for IV feeds through her port until she starts to get stronger. What a mess!!! She is now trying to eat some spaghetti-o's right now but is in pain as her stomach is cramping as soon as the food hits it. I gave her a choice to go anywhere and eat anything she wanted.....she chose spaghetti-o's at home. She has also been put on antibiotics for an infection on her thumb. She picked a cuticle so bad that it is red, and inflamed and looks really nasty. She knows better than to do that especially when she has no ANC to fight off infections. Please pray for NO FEVERS, and for her to be able to KEEP FOOD IN and GET STRONGER!!! We will be back in clinic tomorrow for 4 hours of IV flouids with sodium and potassium. Lets hope for a better day!!
Thanks for checking in, Michelle
Tuesday,
Today was our day "off", at leat it was supposed to be. Sydney crawled out of bed for her teacher to come by this morning. She was in a lot of pain from all of the cramping going on in her stomach. She made it through 2 classes, but was just miserable fighting back tears all morning from the pain. When school was over, I called the clinic to see what I should do. Of course, they told me to being her in for fluids. So we went. She got a liter of fluids, and a cbc. Blood counts are steadily dropping. Her anc is now 0.4 which means that she is at high risk for infection. She also got a type and screen for a blood transfusion in a day or so. We are now back at home, just in time for me to cook dinner, throw in a load of laundry, and probably go to bed early. I feel mentally exhausted and physically also. Another brave angel earned his wings today (Lucas Tran). Why???Why?? Why can't we convince any millionaires to help out?? I do not understand why it is so hard to reach these people. There are thousands of Atheletes who could help, rock stars, movie & TV stars. Also pleae pray for Jack Brown, His dad Richard rode in the Loneliest Road bike ride, and Jack has relapsed and has gone back to England. This is just so unfair!!
PRAYERS ARE NEEDED!!!!! MIRACLES ARE NEEDED!!!
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Monday -
Another LONG day for poor Sydney. We gt up early and headed to the clinic. She felt terrible through the night, and didn't get much sleep at all. When we got to the clicic, Sydney didn't even make it in the door before she started throwing up all over the parking lot. I just feel so helpless as I rub her back and wipe her tears. We made it in, and sure enough, she needed platelets (as suspected). She also lost 2 and a half lbs since Friday. She was dehydrated again, so she got 5 hours of IV fluids, with her platelets. She also got a Neulasta shot instead of GCSF this time to help with the WBC's. She made many trips to the bathroom, and they are suspecting a possible C-diff infection. She is taking so many meds right now, I can barely keep up with them... Zofran, Visteral, Decadron, Lomotil w/ Atropine, immodium, tylenol, benadryl, and megase. Hopefully, tonight will be a better night. I got her some Olive Garden breadsticks and salad dressing (her favorite) and she ate one... That's a start. Maybe later she will eat some more. Please pray for her to start feeling better and put back on some weight.
CHEMO SUCKS!!!!! We need to raise this money for the HU3f8, so she will not have to suffer from these treatments! Don't forget about the Loneliest Road Campaign... Keep spreading the word, and helping to raise that money.
Michelle
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It's Sunday evening, and we are ready for bed. We had a great weekend, however, it would have been even greater if SYdney wasn't feeling those darn side effects of her chemo.
We went to the Melting Pot on Friday night for Drew's B-day. We had a delicious 4 course fondue meal. Sydney made frequent trips to the bathroom between each course. She didn't eat much. She slept most of the day Saturday. Woke up at 11:30am, went shopping for 2 hours with grammy and me, then took another nap before we had to go out again. We went to the Lyrics for Life concert. The band, Sister Hazel, was amazing. It was such a great night and it was all to benefit different pediatric cancer organizations. At one point during the night, Syd and I had to sprint out of there because she was feeling sick. She almost did not make it to the bathroom before puking her guts out. She ate nothing that day. We ended up leaving a little bit early, as we were feeling terribly guilty for dragging Sydney out to a concert when she did not feel very well. She has slept most of today also, and is already in bed for the night. We will head to clinic tomorrow morning for a probable platelet transfusion. We plan on having a low key week to recover and get through these side effects.
Thanks for checking in, & I'll update again soon
Tuesday, October 9, 2007 7:12 PM CDT
Friday Oct 12
HAPPY BIRTHDAY DREW!!!!!!
We are at the clinic. Today, Sydney got her chemotherapy, fluids, and now a blood transfusion. She is still feeling crummy and sleeping around most of the day. Hopefully, by the end of the day she will perk up.
Thanks for checking in
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Thursday, Oct 11
Today is day 4 of chemo. Only one more day to go. Syd is laying next to me, hooked up to an IV pole, getting the zofran infusion. This is to keep her from puking all over the place all day. She is getting preped for the chemo infusion, which comes next. Yesterday, she was dehydrated, and needed fluids all day after she finished her chemo. She felt so much better after the fluids. She even played with her friend Andrea last night. Today, she woke up feeling yucky again, and it is still to be determined if she will get fluids again today. Tomorrow, she is scheduled for chemo, followed by a blood transfusion. After that, we have reservations at Melting Pot for a special birthday dinner for Drew. Saturday night, we are going to a concert/dinner given by the band "Sister Hazel". They have invited us to be their guests at thie "Lyrics for Life" concert. They are even giving some of the proceeds to the Loneliest Road Campaign. WOW!! These wonderful people amaze me. We are still working on Oprah, and getting on the show...Hopefully, that will pan out. I hope Sydney is up for our fun filled weekend.
Thanks for checking in again!!
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Hello,
Busy, Busy, Busy.... That's what we've been since my last update. We are still not completely unpacked from the trip to DC. It has just been nonstop for us. We had a great weekend. On Saturday, we went to a motivational speech given by Dick Vital about giving back to to charities, specifically, pediatric cancer research. He was a great speaker, and really touched a room full of people. After that, we spent the rest of the night with him and the rest of his family in the Coaches suite at the Lightning hockey game. We had a great time there. He even mentioned our family in his blog on his web page, along with a photo of all of us together... www.dickvitalonline.com They were a great family, and Im sure they will make a big difference in the world of ped cancer, and hopefully, influence all of their very wealthy friends to do the same. On Sunday, we went to Disney's MGM with the Oughton Family. We had a great time visiting with them, and enjoyed watching little Grace smile when she got to meet Princess Belle.
Monday, we started another round of Chemotherapy. Sydney barely made the counts for it, but we had to start. It has been 6 weeks since the previous round, and we have to stay on top of this disease. She has really been having a lot of pain in her right knee. There are days when she can not even walk because the pain is so bad. Walking around for 3 days in DC really did her in. She is still suffering from it. We have made the decision to get her a wheel chair. She has a lot of joint damage in her right knee from the accutane she was on earlier this year. Our doc thinks that the joints are deteriorating. Whenever Sydney has to walk alot, she suffers the following day or days. She will not need to use the chair all the time, but I do not want her to be in pain, so anytime we go places which require a lot of walking,(like NY, Disney, the Mall, etc) she will use it. She is already feeling the effects from the chemo. She is having the cramping, loss of appetite, fatigue, etc. I really hate that she has to go through all of this.
I hope many of you got to see the extreme Makeover home edition on Monday night. I thought it was really good, and that sweet girl was just precious. It is so hard to watch those shows, especially when all of the same things are happening to Sydney. I hope it opened some eyes into the world of pediatric cancer. (our world)
The Loneliest Road Campaign is not over!!!! Kevin is running the NYC marathon (26.2 miles) on November 4 for the LR campaign. He needs sponsors and lots of support. Please spread the word - any donation will do - 100 percent goes to the LR campaign. To donate, go to www.loneliestroad.org If you will be in Manhattan that weekend, make a poster and go out and show support!! We will all be there cheering him on, as well as so many others who are running for pediatric cancer!!!
Also, LR T shirts will be for sale on the LR website very soon, as well as embroidered polo shirts. Keep checking the site for them. They are very nice, and 100 percent goes to the fund!
Thanks for checking in on us today. Please continue to lift Sydney up in prayer on this tough week. Also please pray that we find that one person who can finance the HU-3f8 antibody soon!! TIME IS OF THE ESSENCE!!!!!!
Happy 14th Anniversary to my Hubby!! I love you Kevin!! and Happy Birthday to my baby boy, Drew, who will be turning 12 on Friday!!! Wow, where has the time gone????
Michelle
Thursday, October 4, 2007 6:51 AM CDT
Friday Oct 5
Here is a sample of the OVER 500 pictures I took on the trip!!!! Have a great weekend. I'll update again on Monday.
Michelle
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Ok, I have been trying to think of a way to organize my thoughts for this update, and I guess, I will just go day by day. That might make it easier to remember everything…
Last Tuesday, we were supposed to go to the clinic to get a platelet transfusion, then leave for the long 14 hour drive. Well, you know that nothing EVER goes as planned. Anyway, after the platelets were finished, her nurse did a cbc, and discovered that her hemoglobin was only 7.5, so that meant that Syd needed blood also. The problem was that we did not have enough time for a blood transfusion. After, much debate, we decided to give her what we had time for… ½ of a blood transfusion. She was able to get an hour and a half of blood. It was enough to get us to Virginia without needing more. Anyway, we ended up finally leaving Tampa at 6:00pm. We stopped for the night in Brunswick, GA where I discovered that my cell phone had been sitting in a puddle of water for hours. It has been dead ever since, and will not come back to life. If you have been trying to reach me, I’m sorry. I am not ignoring anyone, I just have not had a phone in over a week. I have been using Sydney’s phone, but it does not have any of MY #’s in it. What a mess. I’m going to work on that as soon as we get home.
Wednesday we drove all day and made it into Crystal City, VA around 8:30pm. It was a beautiful hotel. As we were eating dinner there, Kevin walked in to join us. We were all soooo happy to see him. He drove in to be with us for the night because he was speaking at a press conference the next morning. (I’m getting ahead of myself).
Thursday, We all got up early, got dressed up, and headed for Capitol Hill. There was a press conference on the Conquer Childhood Cancer Act. Representative Deb Price (who lost her daughter to NB) spoke, then Dr Kushner spoke, then Kevin spoke. It was very moving and emotional. After it was over, we did an interview with a news station from Ohio that was there. (the clip of it is on the LR website under press/videos). When we were finished with the press conference, we took the tour of the capitol. It was amazing, and we all really learned a lot. Some of the rooms in there are incredible - there are marble columns everywhere. After getting a bite to eat, we went on to meet with our congressman from Tampa, Gus Bilarakis. He was very busy, and had a speech to give to congress at that time. However, he wanted to hear what we were saying, so he let us walk down there with him. Then, he decided to take the kids with him on the floor of congress while he gave his speech. Us parents had to wait outside. Sydney said that it was funny in there…All of the democrats and republicans were screaming at each other, and arguing about storm water damage. The kids have no idea how HUGE that is, and how no one gets to go in there and see all of that. Anyway, when they came out, Mr Bilarakis, sat down with all of us to talk more about how he can help get us funding NOW for ped. Cancer. He understands that time is of the essence for Sydney and the other children, and is trying to get in touch with the very wealthy people he knows. Hopefully, something will pan out!!! After all of that, we rushed out of the capitol, and had to get to the local ABC news station for a live interview. We made it there just in time to do the segment. We talked all about the LR campaign, and shared our story. It turned out well. When we were finished with that, Kevin had to leave us to drive back to Richmond, to meet the guys and finish out the last 2 days of the ride. It was hard saying good bye again, but easier knowing we would see him in 2 days.
Friday morning, we headed out to Georgetown hospital to have Sydney’s blood counts checked. We assumed that she would need blood and platelets, but to our surprise, she needed nothing. We had nothing planned for the day, so it was great to be able to do anything we wanted. The doctor, nurses, and other parents at the Georgetown Clinic were wonderful. They made us feel like we had been treated there for years. Everyone was just so nice. We decided to walk around Georgetown and check out the shops. It’s such a beautiful place. All of Virginia is. The hills are winding everywhere, leaves are changing colors and falling, and it seems so clean. It is nothing at all like NYC. It is gorgeous. It really made me feel (for just a few seconds) like moving away from Hot, flat, humid Florida. Our friend and fellow NB parent, Caryn Franca, showed us around and helped us get from place to place. Thank you Caryn!!!!
Saturday - the big finish!!!! The guys were supposed to ride into the park around 11:00am. We arrived around 9:30 to prepare. There were tons of posters, signs, and we brought Tshirts to hand out to all of the wonderful supporters who came out. We were so overwhelmed by the turn out. It was incredible. I had 170 t shirts and we actually ran out of them. There were also several people who had their own shirts made. I know there were over 200 people there. When the guys rode in, it was so emotional. There was not a dry eye in the park. Everyone was so happy to hbe reunited,. Thank you to Kristi and Craig Engle for donating the LR shirts. They have a t shirt company called Get Smoked Fishwear. Check it out, their shirts are great!!! When we were all finished with the hugs, everyone gathered around, and people took turns speaking to the group. It was one of the best days, ever!! After that, we all went back to Caryn’s house for an after party. There was a moon bounce, pony rides, 4 wheeler rides, and tons of great food and drinks. Thanks Caryn for opening your house to all of us. We had a great time. I have to say that just because the Loneliest Road bike ride is over, the campaign is far from over. We fell WAY short of achieving the goal of 3-5 million dollars. That was the only disappointing part of this whole experience. But, like I said, it’s not over yet, and it won’t be until the goal is reached. Please continue to spread the word about the LR campaign, and also check back to the website. There are more videos to come from the finish and after party. Also, there will be updates on all of the newest fundraisers and how you can help.
Sunday, Monday, & Tuesday we were tacky tourists. We walked all over DC. We went to the White House, the Smithsonian original museum, the Air and Space museum, the Washington Monument, the Vietnam Memorial, the Lincoln Memorial, the Jefferson Memorial, the Museum of Natural history, the zoo, the National Cathedral, and the Spy Museum. We ate at the ESPN zone, and Hard Rock Café. If there is something I did not mention, it’s because I forgot, but we did do everything in DC worth doing (I think). It was all neat and cool, but just like the Statue of Liberty or Empire State Bld …… - It’s nice to do once, but I have no desire to go back. I took lots of wonderful pictures, and have really sore, swollen feet from the experience. We all really learned a lot about our countries history, and I’m so glad that my kids got to do all of the amazing things they did. We also had to go to Georgetown hospital again on Monday to check counts. They had dropped since Friday, but were still not low enough to be transfused. Platelets were 38, and HGB was 9.5
Today is Wednesday, and we are driving straight through back to good ol‘ Valrico, FL. We will really miss the beautiful weather we left behind in VA. But, we are happy to get back to our own beds and our dogs. We just would like to say another thank you to everyone who supported the Loneliest Road Campaign, and ask that you continue to do so. I know it has changed our lives, as well as so many other’s across the country. We will get there eventually, I am sure of it. Thank you for all of the prayers, and please continue to pray for complete healing for Sydney and all of the other children. Syd will start another round of Chemotherapy on Monday. (the fun is over, and it’s back to reality).
I have a ton of pictures to sort through and share. Stay tuned for them soon!
Michelle
Tuesday, October 2, 2007 6:59 PM CDT
Hello everyone,
I have so much to update and over 200 pics to share. We have been going nonstop since last week. I promise to have an update in the next day or so. We are leaving DC tomorrow morning, and I have 14 hours to work on my update. Thank you so much for all of the support and prayers. This past week has been glorious, mixed with so many different emotions. Please check back in soon,
Love, Michelle
Saturday, September 22, 2007 4:14 PM CDT
Monday, Sept 24
Well, We spent a while at the clinic today getting Sydney's pentamadine breathing treatment. It's once a month & she dreads it each time. She does need platelets again. She needed them today, but we ran out of time at the clinic, so we will return in the morning for her platelet infusion. Her body is just eating the platelets up, and she is dropping below 20 every 3 days. She is covered in bruises, and looks like she's been beaten all over her legs. Any little bump, turns into a major bruise. She feels great, though and is so ready to head out to DC (after getting platelets) to see her daddy again.
We got all of the Loneliest Road T Shirts yesterday. They match the rider's jerseys, and we will be bringing them all to DC for everyone to wear when the guys finish the ride. We have 170 of them. A lot of people have asked me if I will have the LR bracelets in DC, and the answer is YES.
Kevin will be speaking at the press conference on Thursday morning, then meeting with congress reps, then heading back out to meet the other riders in Virginia to finish out the ride. Sydney and I will be heading to Georgetown hospital for platelets again on Friday. Right now, we are dealing with insurance referrals and red tape to even be able to be seen out there. They are saying that it's not an emergency visit, however, if they do not see her, we will have a major emergency because she could die without platelets in her body. BUT, since we are scheduling the visit, it has to be pre=approved. If we went to the ER, we wouldn't need to go through all this. It can't ever be easy.
Thanks for checking in,
Michelle
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New video link from St Louis TV:
http://cw11tv.trb.com/
When you get to the site, click on biking for a cause
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Well, yesterday, we ended up in clinic for quite a while, as Sydney DID need platelets again. They had dropped to 23. This past round of chemo is really taking longer for her to rebound, and unfortunately, we had to inform the doctor at Georgetown Hospital in DC, that we would probably see her next week. She will get "tanked up" before we leave for DC on Monday or Tuesday, but the platelets may not hold through the week. It's just a bump in the road, we will be ok. It's just always scary going to a new hospital. When we got home last evening, my Mom, sister, and friend came over to help me make the Loneliest Road Sydlets. Thank you guys so much!!! I am finally caught up on bracelet orders, and everything is getting mailed today. We even made extra bracelets for the more orders to come. What a relief to not be backed up anymore. It's so great to have a support system so close who I know I can count on for help when I need it!!!
They LR riders are in ST Louis, MO this morning, and have a very long 300 miles to ride today to make their next destination (Louisville, KY) by tonight. I hope the weather cooperates for them.
Thanks for checking in, we will be spending the weekend getting ready for our big trip next week. I have noticed many people have said that they are writing to Oprah. I just wanted to say thanks, and I hope it works. I, too have written to her at least 50 times, but it seems that she is not getting these letters. I think interns get them, and trash them. I hope you all have better luck than I did. We really need to get through the red tape, and get directly to her. Anyone have any ideas on how to do that????
By the way, I got the copies of the reports of Sydney's recent scans in NY. The CT is stable - to put it best. Im not sure why Dr Kushner was so happy, because everything that was on the scan before, is still there and the words used on the report are "stable". She still has 3 lymph nodes in the trachea that are abnormal, and areas of the thorax that are abnormal. Please pray that this chemo will take care of these lymph nodes. Stable is better than 'progressive', but I wish they would just go away, and return to normal.
I'll update again soon,
Michelle
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Thurs Sept 20
Hello,
It is good to be back at home, sleeping in our own beds (well, actually my bed). The kids have both been sleeping with me since Kevin has been gone. I love having them in the bed, however it’s a tight fit. Sydney and I are laying in the normal area of the bed, and Drew is laying at the foot of the bed, across our feet. They guys made it through Kansas City last night and this morning. They slept at the fire station last night, had a good dinner and even got massages . They had great media coverage also. They are past the half way mark now, and we are counting down the days until next Saturday, the 29th, when they finish at the Arlington Park, across the river from DC. Sydney is feeling a little better, and I am a lot better!!
Tomorrow, we will be in clinic, and I am hoping that her blood counts will start to recover on their own soon. Maybe we will see an upward trend tomorrow, because I do not want to have to take her to a new hospital on the trip for blood products!! I have a few links to some news videos and also you tube videos.
Get your kneenex out for this one!!
http://www.youtube.com/watch?v=apl-j-gMqXM
Here is a link to a news story:
http://www.thekansascitychannel.com/news/14154969/detail.html
This is another you tube video “My Hero”:
http://www.youtube.com/watch?v=L5DF1DGKX7I
I hope you enjoy all of the videos. There are others on www.loneliestroad.com under the press link. If you click on press, under it, a link to video’s pops up, and just click on that. It will show you some of the other you tube videos.
Thanks for checking in on us again,
Please don’t forget to add these wonderful fathers to your prayers!!
Michelle
Monday, September 17, 2007 9:19 PM CDT
Hello, we are safe and sound at home, trying to get back to a "schedule" until our next rrip next week to DC to reunite with Kevin and the rest of the "Loneliest Road Crew". Here is the latest news clip from Denver - these guys are really making a difference, and we are SOOO PROUD OF THEM!!!
http://www.9news.com/news/article.aspx?storyid=77471
Just copy and paste
check it out... it's great!!
Michelle
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Hello, Our day started today very early at 7:30am. We arrived at the hospital and began “the wait” which is what you do ALL DAY here at MSKCC it seems. We went to the IV room, and Sydney got her port accessed, and several tubes of blood drawn. Then we waited….. Finally, at 8:35 we were called back to the NP for a consult before the MRI (which was at 8:30 - we were late!!!). They cleared us for the scans and gave us the contrast for the CT scan later in the day. Sydney refused to go to MRI without sedation, so she convinced the NP to give her some Ativan before we went up for MRI. It helped her a lot, as she relaxed during the entire MRI like a champ. When that was over, we went back to the Pediatric day Hospital to drink the CT contrast, then we went to radiology. We waited some more…. Finally we were called back and the CT scan was completed. While we were there, the NP called us and informed me that Syd needed a platelet transfusion, so we should return to the PDH as soon as the CT was over. Well, we went back there and waited for an hour. She was finally hooked up to her platelets and we waited some more. While we were waiting, Sydney took a 2 hour nap. I was going insane as I watched people who had just arrived to the clinic being called back, while we sat there waiting. It can really make you go crazy. Finally, at 4:00pm, we were called back to see Dr Kushner. He said that Sydney looked great, and that we should continue the chemotherapy she is on for up to another year. I was in shock. This kid has had 7 blood transfusions in the past 17 days, and now we are looking at doing this for another year.?.?. But, I guess its better than no treatment and always worrying that the cancer could be progressing again. He said that her scans looked good, and that the inconclusive lymph nodes are now smaller, and the thickening of the lung lining is smaller. He also believes that none of it is cancer. So, if this chemo is working, and keeping her disease in check, I guess it will be ok to stay the course for a while. However, it will be difficult, and she may never return to school this year. I feel really bad for her about that, but I will make her time at home with me very enjoyable, and she will play with her good friends on the weekends as much as possible. While we were visiting with the doc, she said that she was starting to get a sore throat. The looked at her throat, and her tonsils are covered with white spots. So they are treating her for strep - even though it could be any virus. She is now on antibiotics and a numbing mouthwash because she also has 3 sores on her tongue. Her blood counts are still dropping. Her platelets were 19 (that’s why she had the transfusion) - her anc is 0.8 and her hgb is holding at 10.9 - due to a transfusion she had on Friday. We are ready to go home tomorrow morning. The weather here is gorgeous. The temps are crisp and cool - it really feels like fall. I wish we could bring this weather home with us back to Fl where it is 95 degrees.
Kevin is doing really well. They are on their way to Kansas. Denver was great, and they met many families - even a 31 year old NB survivor. He said that those kids and families gave them more motivation to keep going strong. They are through the Rockies, and it’s all down hill from here (until the mtns on the east coast). Richard Brown (from London) joined the group last night, and he is taking the place of Rick St John who had to go back to work in Ohio. They are all looking forward to some flat roads to ride on for a while, as the mountains were a killer!!
Thanks for checking in again, and I’ll update again soon!!
Love, MIchelle
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Sunday Sept 16th
I know I have not been doing very well with the updates this past week, but things have just been so extremely hectic, I do not have the time. I am updating from the airplane right now. Sydney and I are on our way to New York. She will have her scans tomorrow and then we will be flying back home on Tuesday morning. The only scans she is having is a Ct and an MRI. I think because her MIBG didn’t show any new disease, and the Bone marrows were NED, that is why they are only repeating the CT scan. Hopefully it will show much improvement and all of the uncertain areas on it will be cleared up. Her body has had another month to recover from her surgery since her last CT, as well as another round of chemotherapy. I’m not really sure why she is having an MRI, especially since she just had one 2 weeks ago at home, and it didn’t show any cancer. I guess we will just have to be patient and see what happens. She has been having more pain (on and off) in her left side around her scar - lung area.
This week , we spent M, W, and F at the clinic. She received 3 transfusions (2 platelet, and one red blood). We have been exhausted. On top of that I was really sick for about 4 days. I feel much better now. Drew and Sydney are also fighting colds - sneezing, itchy throats, and coughing. So far, no fevers. We have also been making Sydlets like crazy. We made about 175 Loneliest Road bracelets, and other necklaces, bracelets and ear rings. It has really been a tough week without Kevin. It’s been hard not to be able to talk to him whenever I want to. He calls a few times a day but we never know when it will be, and usually, it’s only for a few minutes. I really miss him a lot, and can not wait to get to DC and see him on the 29th.
Kevin and the guys are doing well on the road. Last night, they passed through Steamboat Springs, CO, and will be arriving in Denver tonight. He said that the weather has been tolerable and the scenery is gorgeous. As of last night, he wants us to move to Steamboat Springs. He has been pushing that we move to Colorado for a few years now. If you have not been to the LR website in a while, check it out because it changes all the time. They have a blog that tells what they have been doing and where they will be next. It’s a link called “Blogger” and it is located right on top of the picture of the LR bracelet. On the blog, there are also links to some of the news stories that have been done in the various cities. I encourage you to look at them, because they are great, very inspiring. When they get to Denver, they will be going to the Children’s hospital and visiting some children there who have NB. They will have a “lights and sirens” escort to the hospital by the local fire dept. And the media will follow. They should have some great coverage there in Denver. They are very tired, biking through the Rocky Mountains, but they just think about all the pain and suffering their kids have been through, and that keeps them going strong. They are really AMAZING men!!!
I think that’s all I have for now. Thanks for checking in today. Please remember Sydney in your prayers during these scans. Also remember the fathers biking across the country, and pray for their safety and health, and for all of the children they are riding for… Grace, Taylor, Kia, Cody, Marissa, Sydney, Jack and all of the others.
I’ll update again from NY,
Michelle
www.loneliestroad.org
Tuesday, September 11, 2007 6:16 PM CDT
2 more u tube short videos shot of the dads and the Loneliest Road Campaign....
http://www.youtube.com/watch?v=pKU4-9rrkf8
http://www.youtube.com/watch?v=0ZS2bLP6ARw
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Another quick addition.... Please watch this u-tube video. It's of the Loneliest Road and it's AWESOME!!!!! Just copy and paste it. Also, please feel free to forward it out to EVERYONE!!
http://www.youtube.com/watch?v=6GOORenB0fU
Just a quick addition from last night... I just found out that they have passed the $100,000 mark!!!! Praises!!!! And it's only day 3!!! WAY TO GO GUYS, and thank you to everyone who is donating!!!!
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Hello,
I am sorry for not updating sooner, but I seem to be overwhelmed, and can not find enough time in the day.
We are really missing Kevin, but he is doing well. They are in Nevada today. They have had several interviews in San Fransisco, Sacramento, and Reno. Their next big city will be Salt Lake City, where they will have some more TV spots. They are supposed to arrive there on Friday morning. So far, the guys have not had much sleep,. Hopefully, they can play catch up in the next couple days. The word is getting out about the campaign, all over the country. I have had so many wonderful emails from all over the place.
As for us at home, we are doing fine. So far, our biggest problem was a clogged toilet, but it is all better now. On Monday, I took Sydney to clinic for a cbc, and her platelets were at 15. So, that meant a transfusion was needed. We had to wait around until 1pm to get the platelets, and I barely made it out of there to pick Drew up from school on time. We go back tomorrow for another cbc, and possibly more transfusions, as well as on Friday.
We are flying to NY on Sunday to do some repeat scans. It will be a quick trip, and we will return home on Tuesday. We will have to wait for the results and get them after we get back home. Please pray that the ct scan shows much improvement than the previous scan a month ago. Also, the doctors will probably change the treatment plan that Sydney is currently on, to something else.
I seem to have caught a horrible head cold, and it’s hard to stay away from everyone, when you are the only parent in the house. I am coughing, sneezing, runny nose, achey , etc…. I am trying so hard to stay away from Syd, because we do not need her to be sick, she already feels like crap with her stomach issues and the cdiff. It’s good that the kids are old enough to fend for themselves. I bought several frozen meals today for them, and they are “on their own” tonight. Sydney has been sleeping for the past 2 hours, and has been complaining of headaches today, I hope she is not getting what I have.
We also have been making a TON of Loneliest Road Fundraiser bracelets. I am so happy that we are getting this huge response. So far we have sold, just over 100 bracelets. I have donated 2000 dollars so far to the LR campaign, from the bracelet sales. Thank you so much for the support, everyone. We all really appreciate it. I am swamped with bracelet orders, but please just be patient, and it will come. The general turn around time is 3-4 days.
Well, thanks for checking in. Please continue to pray for the guys on the ride, and continue to check the site to track them, leave them messages, and read their daily blogs. www.loneliestroad.org
Until next time, MIchelle
Saturday, September 8, 2007 6:22 PM CDT
Hello,
Well, Kevin left for Sacramento this morning - early this morning. We left the house at 5am. It was hard to see him go, but we are so proud of him and know that he needs to do this. We all cried like babies at the airport this morning. He did make it there safely, about a few hours ago. He met up with Randy and Mike (two other dads who flew in today also). They are pumped, and ready to get started with the ride. I really worry about the traffic, and the dangers there, but I know that there are so many people praying for them, that they will be safe and unharmed along the way.
Sydney has been feeling OK. She has had her ups and downs. Right now is a down moment. She has been sick on and off today, and still having really bad cramping associated with it. I'm pretty sure that she still has the c-diff infection. She has been through 2 courses of antibiotics for it, and it won't go away. It's very painful, and causes her to spend a lot of her time in the bathroom. She is sleeping now and hopefully will feel a little better when she wakes up. She played with her cousin a little bit today, and was able to go out to Target and Yankee candle store for a little retail therapy. We all need that sometimes to cheer us up. Also, Lsat night was realy fun, as Sydney got to go to see High School Musical on ICE!!! We invited some friends and family to go also, as we were given 26 tickets for the show. I think everyone had a good time. Tomorrow, our plan is to go to the Devil Rays baseball game. Syd say's she's going to wear Yankee gear. She's a trip.
Thanks for checking in, and please pray for the Loneliest Road campaign. Keep checking the site because they guys will be blogging on it. www.loneliestroad.org
And if you have't ordered your L.R. fundraiser bracelet, do that soon. They are hot right now, and we really appreciate the support.
I'll update again soon!!
Michelle
Wednesday, September 5, 2007 6:40 PM CDT
Hello,
MRI results:
Not completely normal..... Basically, she has some pockets of possible fluid in her left lung. She also has a possible occult tumor - which they told me means that it is like filled with blood, or sort of like a blood clot. There are also some other abnormal things that are probably due to surgery.
The good news is that it does not show cancer, however, it is also somewhat inconclusive.
She is feeling ok, but not great. Hopefully, each day will get better and better.
Thanks for checking in, and please continue to pray for Sydney, and the Loneliest Road ride (Kevin flies to Sacramento on Saturday). We will miss him so much!!
Also, please spread the word about the ride and the new bracelets. We've sold 27 so far - that's $540 in donations to the campaign.
Until next time,
Michelle
Saturday, September 1, 2007 1:09 PM CDT
Tuesday Sept 4
CBC
ANC 0.4
HGB 7.4
PLTS 23
Syd got blood and platelets all day.
She has been sick with vomitting and bad stomach cramps.
MRI preleminary result - normal (PRAISE GOD)!! Hopefully, the final report will say normal also
We are exhausted so that's all for now!!
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Just a quick update:
The itenerary is up on the website www.loneliestroad.org It lists the major cities the dads will be riding through in order. There are no dates because they are not exactly sure how long it will take them to get through the Rocky Mts. After that, it should be smooth sailing from there. Please go out and show your support for these guys who are working so hard for this campaign.
Sydney is hanging in there. She is pretty lethargic and very sleepy. She has been complaining of headaches on and off - but this is all due to her very low hemoglobin. Once she gets her red blood cell transfusion tomorrow morning, she will perk right up.
It's pouring down rain here is Sunny Fl on this labor day weekend. It makes it easy to just nap all day.
Until tomorrow, Michelle
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The new Loneliest Road Fundraiser bracelets are now online for purchase. Go to www.sydlets.com and click on bracelets, it will be the first bracelet on the page! Thank you in advance for the support of the L.R. campaign. We have already received several orders for the bracelet.
Hello,
What a really long day we had at clinic yesterday. Our plan was to go in to finish Sydney’s chemo, but we got a whole lot more than that. Her blood counts were low, she needed platelets, and was borderline for blood. Since it’s a 3 day weekend, they decided that they would transfuse both. Anyway, she was also complaining of her side hurting around the scarred area of her last surgery. Her doctor decided to do an x-ray. Well, her left lung showed an abnormal area which was unexplainable. The doctor then ordered an emergency MRI. Well, Sydney refused to have the MRI since during her last one, she suffered a major panic attack. Anesthesia was called, and she was knocked out for 2 hours for the scan. She got her platelet transfusion, but we ran out of time for her to get the blood. The day was horrible, and if something could go wrong, it did.
We do not have any results of the MRI yet. I guess we will get them on Tuesday when we return to clinic for the blood transfusion. Hopefully, she will make it through the weekend without symptoms, otherwise we may need to go to the hospital for the blood over the weekend. Right now, she is resting on the couch watching a movie. She’s really tired, and running a low grade fever. I hope it does not get any higher.
Please pray for the pain in her side to go away, and be nothing. We are so scared that it may have something to do with the inconclusive findings on her scans last month. All of this unknown is so scary.
Also pray for her temp to stay low, and not rise anymore.
I am going to overnight the MRI cd to NY on Tuesday, and hopefully, we will have a plan of action soon for Sydney’s treatment. (remember, she is supposed to go to NY on Sept 17th for MRI). We may have to get there sooner.
I hope everyone has a great long, holiday weekend. We will be hanging around the house just taking it easy.
Thanks for checking in, Michelle
Wednesday, August 29, 2007 2:28 PM CDT
I will add the new cities, as I find them out, but as of now, the riders will pass through San Fransisco - Sacramento, Salt Lake City, Denver, St Louis......There are more, but Im still trying to get that info. Thanks for the support.
Syd is feeling the effects of the chemo today, but still OK.
Hello,
Well, three days down, two to go. So far, chemotherapy is going smoothly. Each day, she gets an hour infusion of Irenotecan, followed by 5 pills of Temodar. She is still feeling pretty good. Today after chemo, she said she wanted Olive Garden (big surprise), so we ordered take out breadsticks and salad dressing. That is her absolute favorite, and for some reason, she craves it while on chemo. After we ate, she felt like going swimming, so we did. Well, that really tired her out, and now she's sleeping it off. I expect the side effects will start any day now, but we are trying to enjoy the days when she is feeling good. She restarted the antibiotics for the gut infection (c-diff). After 10 days of antibiotics, it just didn't cut it, so she started another round. Hopefully, it will clear it up this time, because it can be really painful for her. Her blood counts are pretty low, but holding steady. ANC = 0.9 HGB = 9.2 PLTS = 31 She will probably spend all of next week in clinic getting blood and platelets, and will also start the GCSF daily shots on Saturday. School is going good for her. She got all of her assignments for the homebound program, and is doing really well keeping up with them. It just makes it so much easier for her to do the work in her own time when she feels good. There's not so much pressure to complete everything by a certain time.
Loneliest Road update:
The time is flying by, and the guys are in the best shape ever. I think they are ready. Kevin is flying to Sacramento next Saturday, and the ride starts the following Monday (Sept 10). We have not raised nearly enough money for this. I feel like a broken record saying the same thing over and over again, but this is so important!!!! We have got to raise this money to get these antibodies made and into clinical trial. Time is running out. I am saddened to say that several NB warriors passed away this month, and several others are about to. Sydney has been battling this beast for 3 years and 9 months. She has lived much longer than anyone ever thought she would at diagnosis. We are so blessed to still have her here today, BUT she is NOT cancer free. Her poor body is battling cancer every day of her life, and it will not last forever. Her body is getting tired, her bone marrow can not handle much more chemo, it's harder and harder to keep her spirit up as she gets older, and understands this disease more and more and sees so many of her fellow NB friends passing. This is no life for an 11 year old child, or any child. We all can make a difference. Please , Please spread the word about the LR campaign, and get all of your friends, and family to do the same. This website gets about 1000 hits a day. If 1000 people could donate 10 dollars, and get each of their friends to each donate 10 dollars, we would reach our goal in no time.
I would also like to encourage everyone to go out and support these dads on the ride. They are altering the route a little bit so that they can hit some larger cities like St Louis, and many more. If they are riding through your area, come out and cheer them on. Tell your local news about it, so they will come out.
I am making a special edition "Loneliest Road" Sydlet. It will have 5 large yellow crystals on it to represent the 5 dads riding for these kids. It will be beautiful and sell for $40. $20 of it will go directly to the LR capaign. It will be a great way for you to donate to the cause, and have something to remember it by. I am making them now, and they will be online by the end of the week for purchase.
Thanks for checking in again, and I'll update again real soon. Please continue to pray for all of the children battling cancer and suffering. As well as these dads who are gearing up for the ride. They are exhausted, mentally and physically, but will do anyting for these kids. I am so proud, and I pray that they have a safe trip.
Until next time, Michelle
Monday, August 27, 2007 6:56 AM CDT
Today began early in the clinic. Sydney's blood counts are ok, not really high enough for chemo, but given the uncertainty of her last scans, we began anyway. It was sort of exciting because our local NBC station came out to interview her about the Loneliest Road Campaign, so be looking for the story on the news next weekend.
After Chemo, we picked Drew up from school, and Sydney came home to open some birthday presents. She is feeling ok. Mostly still good, but each day of the chemo, she will start to see more side effects.
We got our first National exposure for the loneliest road. It was on ESPN Mike and Mike show today, and also on ESPN radio with Dick Vitale. I would like to thank Chris and John Torterella (coach of the Tampa Bay Lightning) for talking to Mr Vitale last week for us and telling him all about Sydney and the Loneliest Road. We are so happy that the word is spreading. Lets just hope and pray that the money will follow. That's how it will happen, people we know - know other people - who know other people!!!!
Tonight, Sydney wants to go out to Chili's for dinner, so we're going there in a little bit (as soon as homework is finished).
Thanks for checking in, and also thank you to everyone who sent Sydney sweet messages, birthday cards, and gifts. It has made the day special for her.
Until next time, MIchelle
******************************************************************************
HAPPY BIRTHDAY SYDNEY!!!!
We're off to chemotherapy today, but we have been celebrating all weekend!! I'll update again this evening.
Michelle
WE LOVE YOU SYD!!!!!!!!!!!!!
Monday, August 27, 2007 6:47 AM CDT
HAPPY BIRTHDAY SYDNEY!!!!!
Today, Sydney turned 11 years old. Who whould have guessed that when she was diagnosed with Neuroblastoma at age 7, we would be celebrating this day with her???? What a blessing and a miracle she is!!!!
I love you Sydney!!!
Today she will spend her birthday in the day clinic receiving chemptherapy. Not the funnest b-day, but we will make the best of it!!
I'll update again later.
Michelle
Thursday, August 23, 2007 8:02 PM CDT
Hello,
The GIANT picture is from the first day of school (Monday). I'm having difficulty resizing it, so it will only be up for a couple days. She is wearing her wig in the picture. Doesn't she look adorable??
As for her Locks of Love wig, we made the mold of her head, now we have to send it back in, and the wig can be made. Real hair should be arriving sometime around Christmas!!! Woo Hoo!!!
She made it to school 3 and a half days this week. Pretty good for her. She will be absent tomorrow for a blood transfusion, maybe platelets too. Then, she starts chemo next week, so she will miss that. Then the following week, she will be sick from the chemo and miss that week too. So, after lots of talks with Sydney, the guidance councelor, her doctors, and her teachers, we have decided to pull her out of school. She will be enrolled full time in the hospital/homebound program. It will be like her fourth grade year, where she does all of her school work out of school with other teachers. But when she is feeling good, she can visit her school anytime to still feel connected with her peers, and friends.
It was a really tough decision to make, but one that had to be made. I felt like Sydney would be so bogged down with make-up work, and stressed out, that she would not be happy. And we all know that an unhappy child doesn't respond to treatment like a happy child does. Her mental health is just as important as her physical health.
That's all for now. Please keep promoting the Loneliest Road Campaign. Those guys are working so hard!! I know it will all be worth it when it's over!!
Thanks for checking in, and please continue to pray for Sydney's complete healing.!!!
Love, Michelle
Thursday, August 23, 2007 8:02 PM CDT
Hello,
The GIANT picture is from the first day of school (Monday). I'm having difficulty resizing it, so it will only be up for a couple days. She is wearing her wig in the picture. Doesn't she look adorable??
As for her Locks of Love wig, we made the mold of her head, now we have to send it back in, and the wig can be made. Real hair should be arriving sometime around Christmas!!! Woo Hoo!!!
She made it to school 3 and a half days this week. Pretty good for her. She will be absent tomorrow for a blood transfusion, maybe platelets too. Then, she starts chemo next week, so she will miss that. Then the following week, she will be sick from the chemo and miss that week too. So, after lots of talks with Sydney, the guidance councelor, her doctors, and her teachers, we have decided to pull her out of school. She will be enrolled full time in the hospital/homebound program. It will be like her fourth grade year, where she does all of her school work out of school with other teachers. But when she is feeling good, she can visit her school anytime to still feel connected with her peers, and friends.
It was a really tough decision to make, but one that had to be made. I felt like Sydney would be so bogged down with make-up work, and stressed out, that she would not be happy. And we all know that an unhappy child doesn't respond to treatment like a happy child does. Her mental health is just as important as her physical health.
That's all for now. Please keep promoting the Loneliest Road Campaign. Those guys are working so hard!! I know it will all be worth it when it's over!!
Thanks for checking in, and please continue to pray for Sydney's complete healing.!!!
Love, Michelle
Thursday, August 23, 2007 8:02 PM CDT
Hello,
The GIANT picture is from the first day of school (Monday). I'm having difficulty resizing it, so it will only be up for a couple days. She is wearing her wig in the picture. Doesn't she look adorable??
As for her Locks of Love wig, we made the mold of her head, now we have to send it back in, and the wig can be made. Real hair should be arriving sometime around Christmas!!! Woo Hoo!!!
She made it to school 3 and a half days this week. Pretty good for her. She will be absent tomorrow for a blood transfusion, maybe platelets too. Then, she starts chemo next week, so she will miss that. Then the following week, she will be sick from the chemo and miss that week too. So, after lots of talks with Sydney, the guidance councelor, her doctors, and her teachers, we have decided to pull her out of school. She will be enrolled full time in the hospital/homebound program. It will be like her fourth grade year, where she does all of her school work out of school with other teachers. But when she is feeling good, she can visit her school anytime to still feel connected with her peers, and friends.
It was a really tough decision to make, but one that had to be made. I felt like Sydney would be so bogged down with make-up work, and stressed out, that she would not be happy. And we all know that an unhappy child doesn't respond to treatment like a happy child does. Her mental health is just as important as her physical health.
That's all for now. Please keep promoting the Loneliest Road Campaign. Those guys are working so hard!! I know it will all be worth it when it's over!!
Thanks for checking in, and please continue to pray for Sydney's complete healing.!!!
Love, Michelle
Tuesday, August 21, 2007 8:46 AM CDT
New update:
We spent the afternoon at the clinic today getting a cbc and visiting with the doctor. Syd's blood counts are holding, but it's looking like she will need red blood transfusion on Friday (8.7 today). She feels like it, too, as she does not have much energy, and everytime she sits down, she drifts off to sleep. We got a copy of the reports of her scans and biopsies today (finally). We had a HUGE SCARE. Her MIBG scan looks good - only the left femur shows up. YOu already know how bad the CT looks, well, the PET scan looks even worse. There were several new spots, but mostly all of them are inconclusive about new disease or post-operative changes. Finally, her bone marrow biopsies - right was negative, and left was positive (at least that's what the report said). I , once again, felt the inability to breathe. I couldn't believe it since Dr Kushner told me last week that they were both just fine. Anyway, We cleared it up with NY, and it was just a type-o. Both biopsies are negative, and all is fine with that. So, we are very uncertain if there is new disease in the chest area of her body, maybe some lymph nodes in the neck area, and in the lungs. We are restarting chemotherapy on Monday (her 11th birthday), August 27th, and will fly back to NY on Sept 16th to rescan on the 17th. Please pray that these changes on the PET scan and Ct scan are just from the surgery, and not another progression of the cancer.
On another note, Sydney and Drew are NOT TWINS!!! (They are Irish twins). They are 10 and a half months apart, and their birthdays just so happen to fall within the same school year. Sydney will be 11 on August 27th, and Drew is 11 and will be 12 on October 12th. They are the same age for 6 weeks of the year. It's crazy, I know!!!
Thanks for checking in, and I'll update again soon. Sydney actually gets to go to school for 2 days straight. Woo hoo!!!
***************************************************************************
Well, it looks like we are going to continue one more round of the same chemo Sydney has been on for the past 2 rounds (Ireno/Temodar) and we are planning to do a repeat CT scan and an MRI of chest in 4 weeks. So, we will havg out at home for a few more weeks, then return to NY mid-end of Sept. It just seems that everything is unclear, and they do not want to do something drastic to her if all of the chanhes are just post operative. On the other hand, I am nervous because if the changes are new disease, waiting another 4 weeks before treating it, could be really bad. I know it's all in God's hands, but this is so hard to deal with.
The first day of school went really well for the kids. I think they liked it and feel grown up. Syd and Drew actually have 2 classes together. I have always purposely kept them apart in school because they can be very competitive, and they need their time apart. So, this should be interesting. They have Math and PE together. I wonder if the teachers realize that they are brother/sister?
Sydhney has a clinic appt this afternoon to check for counts. I have a pic from the first day that I will put up soon.
Thanks for checking in....
Love, Michelle
Tuesday, August 21, 2007 8:46 AM CDT
New update:
We spent the afternoon at the clinic today getting a cbc and visiting with the doctor. Syd's blood counts are holding, but it's looking like she will need red blood transfusion on Friday (8.7 today). She feels like it, too, as she does not have much energy, and everytime she sits down, she drifts off to sleep. We got a copy of the reports of her scans and biopsies today (finally). We had a HUGE SCARE. Her MIBG scan looks good - only the left femur shows up. YOu already know how bad the CT looks, well, the PET scan looks even worse. There were several new spots, but mostly all of them are inconclusive about new disease or post-operative changes. Finally, her bone marrow biopsies - right was negative, and left was positive (at least that's what the report said). I , once again, felt the inability to breathe. I couldn't believe it since Dr Kushner told me last week that they were both just fine. Anyway, We cleared it up with NY, and it was just a type-o. Both biopsies are negative, and all is fine with that. So, we are very uncertain if there is new disease in the chest area of her body, maybe some lymph nodes in the neck area, and in the lungs. We are restarting chemotherapy on Monday (her 11th birthday), August 27th, and will fly back to NY on Sept 16th to rescan on the 17th. Please pray that these changes on the PET scan and Ct scan are just from the surgery, and not another progression of the cancer.
On another note, Sydney and Drew are NOT TWINS!!! (They are Irish twins). They are 10 and a half months apart, and their birthdays just so happen to fall within the same school year. Sydney will be 11 on August 27th, and Drew is 11 and will be 12 on October 12th. They are the same age for 6 weeks of the year. It's crazy, I know!!!
Thanks for checking in, and I'll update again soon. Sydney actually gets to go to school for 2 days straight. Woo hoo!!!
***************************************************************************
Well, it looks like we are going to continue one more round of the same chemo Sydney has been on for the past 2 rounds (Ireno/Temodar) and we are planning to do a repeat CT scan and an MRI of chest in 4 weeks. So, we will havg out at home for a few more weeks, then return to NY mid-end of Sept. It just seems that everything is unclear, and they do not want to do something drastic to her if all of the chanhes are just post operative. On the other hand, I am nervous because if the changes are new disease, waiting another 4 weeks before treating it, could be really bad. I know it's all in God's hands, but this is so hard to deal with.
The first day of school went really well for the kids. I think they liked it and feel grown up. Syd and Drew actually have 2 classes together. I have always purposely kept them apart in school because they can be very competitive, and they need their time apart. So, this should be interesting. They have Math and PE together. I wonder if the teachers realize that they are brother/sister?
Sydhney has a clinic appt this afternoon to check for counts. I have a pic from the first day that I will put up soon.
Thanks for checking in....
Love, Michelle
Friday, August 17, 2007 4:20 PM CDT
Saturday: Here is the link to the article in the paper today. I think it turned out really well!!
http://brandonnews2.tbo.com/content/2007/aug/18/br-hes-riding-his-bike-to-help-me/?news
Hopefully, it will bring in a lot of people. Please feel free to use it on your own websites if you would like.
We're off to Sea World.
................................................................................................................................
Hello, wow it has been very stressful these past two days! Sorry for not updating sooner, but we spent all day at the clinic. Sydney needed 2 bags of platelets. Lots of Fun!!
I did finally get a response from Dr Kushner at Sloan today. Here it is.....
**************************************
"MIBG shows no change, PET shows uptake in leg (as prior PET, and as in MIBG scan) but also uptake in chest - cannot distinguish neuroblastoma there from post-surgical changes. Urine VMA and HVA are completely normal. BM biopsies show no neuroblastoma. No results yet on BM aspirates (but I expect them to be OK too)."
"So I think it is fair to say we do not know for sure what is happening in chest, but it may all be OK."
"Our group will discuss and get back to you."
***********************************
That was the entire email from him. It's very vague, and Im not quite sure what to make of it. It's great that BM's and urine are good, but I would certainly like to know what he means by "chest". The chest could mean a lot like lungs, heart, trachea, thorax...the list goes on. Also, I wonder why the MIBG is unchanged?? The tumor on the last scan in May was removed, so did it grow back?? I still have many questions for him, but it's friday, so I will have to wait. I have asked him to fax the reports to our clinic in Tampa, so that I can see exactly what he means by chest. Overall, it seems that the progression of disease is minimal (I hope), but we still do not know what the next step is, and how treatment will change, but it will be changing. Possibly to a stronger chemo.
Sydney is such a sweetheart. She knows me inside and out, and can tell that I have been extremely upset (even though I didn't think I was showing it), she can just tell. She said to me yesterday, "Mommy, please do not worry about me." "I said, I just love you so much, I always worry." She said, " I don't want to see you sad or cry, I have a good feeling about my cancer. It's not that bad inside, so please don't worry or cry." Then, today, after the email from Dr K, she said,"See Momma, I told you I had a good feeling, you should listen to me more often." Is she amazing or what??? I do not know what I would do without her. I love her so much, and can not imagine her not being here.
So, for now, we are not going to think about cancer and scans. We have a fun night of HIGH SCHOOL MUSICAL partying to do!! Then tomorrow, we are headed to Orlando to Sea World, for one last day of Summer Fun. School starts Monday.
Thank you so much for all of the prayers. I know that God is listening and wrapping his arms around Sydney and holding her close and keeping her safe.
Please continue to pray that her drs figure out a good plan that will keep this beast from spreading anymore!!! Another prayer request, our friend Jessica Rose (from right here in Tampa) did not get the desired results on her scans this week either. Unfortunately, this has been a hard past couple weeks in the world of NB. Our Docs in NY need your prayers to help these poor children.
Please pass on the word about the Loneliest Road campaign. www loneliestroad.org . We need to raise this money. Please get involved and be advocates for us. We need more people to help out. A handful of NB parents and their families is not enough to make the difference. If you are reading this, there IS something you can do!!
Until next time... Love, Michelle
Friday, August 17, 2007 4:20 PM CDT
Hello, wow it has been very stressful these past two days! I did finally get a response from Dr Kushner at Sloan today. Here it is.....
MIBG shows no change, PET shows uptake in leg (as prior PET, and as in MIBG scan) but also uptake in chest - cannot distinguish neuroblastoma there from post-surgical changes. Urine VMA and HVA are completely normal. BM biopsies show no neuroblastoma. No results yet on BM aspirates (but I expect them to be OK too).
So I think it is fair to say we do not know for sure what is happening in chest, but it may all be OK.
Our group will discuss and get back to you.
Thet was the entire email from him. It's very vague, and Im not quite sure what to make of it. It's great that BM's and urine are good, but I would certainly like to know what he means by "chest". The chest could mean a lot like lungs, heart, trachea, thorax...the list goes on. Also, I wonder why the MIBG is unchanged?? The tumor on the last scan in May was removed, so did it grow back?? I still have many questions for him, but it's friday, so I will have to wait. I have asked him to fax the reports to our clinic in Tampa, so that I can see exactly what he means by chest. Overall, it seems that the progression of disease is minimal (I hope), but we still do not know what the next step is, and how treatment will change, but it will be changing. Possibly to a stronger chemo.
Sydney is such a sweetheart. She knows me inside and out, and can tell that I have been extremely upset (even though I didn't think I was showing it), she can just tell. She said to me yesterday, "Mommy, please do not worry about me." "I said, I just love you so much, I always worry." She said, " I don't want to see you sad or cry, I have a good feeling about my cancer. It's not that bad inside, so please don't worry or cry." Then, today, after the email from Dr K, she said,"See Momma, I told you I had a good feeling, you should listen to me more often." Is she amazing or what??? I do not know what I would do without her. I love her so much, and can not imagine her not being here.
So, for now, we are not going to think about cancer and scans. We have a fun night of HIGH SCHOOL MUSICAL partying to do!! Then tomorrow, we are headed to Orlando to Sea World, for one last day of Summer Fun. School starts Monday.
Thank you so much for all of the prayers. I know that God is listening and wrapping his arms around Sydney and holding her close and keeping her safe.
Please continue to pray that her drs figure out a good plan that will keep this beast from spreading anymore!!! Another prayer request, our friend Jessica Rose (from right here in Tampa) did not get the desired results on her scans this week either. Unfortunately, this has been a hard past couple weeks in the world of NB. Our Docs in NY need your prayers to help these poor children.
Please pass on the word about the Loneliest Road campaign. www loneliestroad.org . We need to raise this money. Please get involved and be advocates for us. We need more people to help out. A handful of NB parents and their families is not enough to make the difference. If you are reading this, there IS something you can do!!
Until next time... Love, Michelle
Wednesday, August 15, 2007 5:04 PM CDT
Thursday 5:10pm
We are back home in Fl. We still do not have a report of Sydney's scans yet. The doctor said that there was no official report out yet. The waiting is torture, and the anxiety is building up inside of me. I feel like I'm going to explode any second.
I will update as soon as I find out anything, although I do not expect it to be today anymore. Please continue to pray.
Michelle
**************************************
PRAYERS ARE NEEDED!!!!!
After a long day of scanning, rescanning, waiting, and scanning again, we are back at the RMD house. I knew something was up after the MIBG scan was repeated today. It was like a repeat of 3 months ago. I had a huge pit in my stomach, and found it extremely hard to breathe all day.
When the scans were finally finished, we went to see Dr Kushner. He was acting very weird, and did not want to tell me anything. The computer was down, and he could not pull up the MIBG or PET scans. He did, however, have the CT results, but he did not want to share them without comparing it to the other scans. I asked him to print off the report for me because I knew there was something bad on it that he was hiding. He printed it for me and here's what it said....
New paratracheal lymph node (1cm)
New nodules on left lung (could be disease or trauma from surgery)
New soft tissue in thorax either postoperative changes or new disease
So, there you have it. For sure there is a new tumor (node) in her trachea, and there is possibly new disease on her left lung and thorax.
Not the news we were praying for. Please pray that the MIBG and PET do not show these same findings. We will find out tomorrow. Our family really needs your prayers at this time.
Also, please pray for our good friends the Kueblers. Their daughter Jessie, relapsed yesterday with NB in her spine. There are way too many children suffering from this beast. We have got to get the funding for a cure!!!!
I'll update again tomorrow,
MIchelle
Monday, August 13, 2007 12:03 AM CDT
Hi, so far today, I have no news to report. Sydney had her CT scan this morning, and we turned in her 24 hour urine collection. I will ask tomorrow to see if the report is in (for the CT) but I doubt it will be in that quick. at 2:30 we will go to nuclear med to get her MIBG injection. Tonight is Red Door Spa and Salon night at the house. Syd has an appt to get make up done, and I have a hair appt. Should be kind of fun. I hope she's feeling up to it.
There was a mini article in the Tampa Tribune today. If you didn't see it, here it it...
www.tbo.com/news/metro/MGBLUAKPB5F.html
It's sort of a "teaser" for the really big article that will be running on Saturday (in the Brandon Section). I will put a link to it over the weekend, but if you can get it, do so because it will have many pictures and tell the stories of all of the 5 dads and their children's stories.
Sydney is sleeping now. She was pretty sick last night with vomitting. She says it's from the new antibiotic she's on. She said that it tastes chalky and makes her want to puke. I hope she gets over that because she will be taking it 3 times a day for 10 days!!!
That's all for now. I'll update again tomorrow,
MIchelle
**********************************************
Hello,
We made it safely to New York yesterday afternoon. The flight went well. We were sitting next to the bathroom, which was a good thing, because Sydney needed it twice. Yes, she is still sick and having stomach cramps. It is getting less and less each day, but it is lingering. We found out why today. Our Tampa clinic called me this morning to let me know that her stool cultures taken last week, came up pisitive for intestinal infection. The infection is called C-Diff. It's pretty common for kids to get on this chemo. In fact, she has had it in the past a couple years ago. It's hard to get rid of, especially since she has 2 more rounds of chemo to do, but she has started antibiotics for it, and we will just watch it. The main problem is that she is supposed to stay isolated from any other cancer patients because it is highly contagious, and she can not share a bathroom with anyone either. That makes it hard at the hospital and clinic. Oh well, it could be much worse!!!
Today she had her bone marrow biopsies and has started her 24 hour urine collection. Labs were also drawn today, and her counts are holding from Friday's transfusions. So, that's good. She is in pain, and resting in bed watching Finding Nemo.
Tomorrow, she will have her CT scan, and her MIBG injection.
Wednesday, she will have the MIBG scan, followed by PET scan, followed by a platelet transfusion.
Thursday morning we will fly home, and arrive there at 1:30pm - just in time to go to the walk through at their new school, and get to see where their homeroom classes are. A huge transition from Elementart school. (6 teachers, 6 different classrooms).
School starts on next Monday. The summer flew by way too fast.
Please continue to pray for the scans and biopsies to be NED. We really need that!!
Michelle
Saturday, August 11, 2007 3:01 PM CDT
Hello,
Yesterday, we opened the clinic and closed it down, too. Our platelet party ended up being a red Blood and platelet party. We were there getting blood products until 5:30pm. It was such a long day, and even though we just sat around, we were thoroughly exhausted afterwards. Sydney made up her birthday party invitations, and I made Sydlets all day.
Last night, we went to Kevin's Mom's house for a wonderful Roast Beef dinner with all of the fixins. It was really good, and I think he enjoyed his birthday.
Today has been spent packing for the NY trip. Kevin went out and trained on his bike for a few hours. He is working so hard for the loneliestroad campaign. We are really proud of him. He trains about 20 hours a week on that bike in this 95 degree Florida weather.
Tonight, we are taking the kids to see the new Stardust movie. I'll let ya know how it is.
We are flying out in the morning, so my next update will be from NY. Please check out the news story from last week (if you haven't already). It was good.
Here is the link to the story they did. Just copy and paste it.
www.tampabays10.com/news/local/article.aspx?storyid=60907
I got a call from NBC today, and they are going to come out end of next week to do the story also, They also want to track the story online as the trip progresses. How exciting!!
Please keep up the support, and spreading the word. Like I said before, if you want to ride with the dads, you can!! They would love the company and support. Also, please let any of your media contacts know about it. It would'nt hurt to email Oprah, Ellen, Today show, etc, etc hundreds of times also to get them on board. Still lots of work to be done in only 28 days!!!
Thanks for checking in, we're still waiting to hear about the tshirts being made, but no matter what, the will be made and available for everyone!!!!
www.loneliestroad.org
Michelle
Thursday, August 9, 2007 11:16 AM CDT
If you missed us last night on the news, here is the link to the story they did. It's pretty good. Just copy and paste it.
www.tampabays10.com/news/local/article.aspx?storyid=60907
We're off to the clicic for our 'Platelet Party'!!!! Whoo Hooo!!!!!!
NEW************************************************
If you're in the local area, please watch cbs news tonight at 11:00pm, we did an interview with them for the Loneliest Road campaign.
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Hello,
We are at home today taking it easy. Sydney is pretty weak and feeling bad. Unfortunately, she is still sick. It's mostly in the mornings because her meds wear off during the middle of the night. By afternoon, she starts to feel better, usually, but today is not the case. Her stools now have blood in them, and she is getting mouth sores. Her appetite is poor, but she is staying well hydrated. Her blood counts continue to be very low, which is kind of scary since we are getting on a crowded airplane Sunday. Tomorrow we will spend most of the day at the clinic having what we call a "platelet Party". Yes, she will need at least one bag, possibly two bags. The reason for two is because they need to be pretty high, so that they will last until Sunday when we fly. It can be very dangerous to fly with low platelets due to the pressure in the cabin - can cause internal bleeding. (we do not want that!!!) She is also a possibility for a blood transfusion. We will find out for sure in the morning. She will continue to take the GCSF shots until we return from NY (next Thursday). Please continue to pray for clean scans and biopsies. This work-up will really let us know what is happening in her body. If the cancer has progressed on all of this chemo - things are VERY BAD!!!!! If the scans are clean, the chemo did it's job, and we can breathe a little easier for 3 more months.
Tomorrow is my Amazing Husband's birthday. Happy Birthday Kevin!!! WE LOVE YOU!!!! (If he tells you his age, add 8 to it because he has been saying the same age for 8 years in a row). The secret is out!!!
Thanks for checking in on us again.
P.S. Don't forget about the Loneliest Road Campaign. Please continue to spread the word, and GET IT OUT THERE. Anyone interested in being a part of it, please email me. If we are going through your state, feel free to join the guys and ride with them for a few miles or more!! They welcome anyone who wants to come out and show support!!
www.loneliestroad.org
Michelle
We are hoping to have Tshirts made with this on them. Isn't it an awesome banner/logo for a t shirt???
Thursday, August 9, 2007 11:16 AM CDT
Hello,
We are at home today taking it easy. Sydney is pretty weak and feeling bad. Unfortunately, she is still sick. It's mostly in the mornings because her meds wear off during the middle of the night. By afternoon, she starts to feel better, usually, but today is not the case. Her stools now have blood in them, and she is getting mouth sores. Her appetite is poor, but she is staying well hydrated. Her blood counts continue to be very low, which is kind of scary since we are getting on a crowded airplane Sunday. Tomorrow we will spend most of the day at the clinic having what we call a "platelet Party". Yes, she will need at least one bag, possibly two bags. The reason for two is because they need to be pretty high, so that they will last until Sunday when we fly. It can be very dangerous to fly with low platelets due to the pressure in the cabin - can cause internal bleeding. (we do not want that!!!) She is also a possibility for a blood transfusion. We will find out for sure in the morning. She will continue to take the GCSF shots until we return from NY (next Thursday). Please continue to pray for clean scans and biopsies. This work-up will really let us know what is happening in her body. If the cancer has progressed on all of this chemo - things are VERY BAD!!!!! If the scans are clean, the chemo did it's job, and we can breathe a little easier for 3 more months.
Tomorrow is my Amazing Husband's birthday. Happy Birthday Kevin!!! WE LOVE YOU!!!! (If he tells you his age, add 8 to it because he has been saying the same age for 8 years in a row). The secret is out!!!
Thanks for checking in on us again.
P.S. Don't forget about the Loneliest Road Campaign. Please continue to spread the word, and GET IT OUT THERE. Anyone interested in being a part of it, please email me. If we are going through your state, feel free to join the guys and ride with them for a few miles or more!! They welcome anyone who wants to come out and show support!!
www.loneliestroad.org
Michelle
Wednesday, August 8, 2007 12:56 AM CDT
Hello,
I'l make today's entry short and sweet.
Sydney is still feeling pretty bad. She was sick a few times through the night, and this morning. We are trying to keep her hydrated, and eating as many crackers as possible. Today, she ate 2, and a few bites of spaghetti-o's. Her meds do help, but they wear off fast, and it's hard to stay on top of it all. She is napping right now.
We were able to get registered for school today. I think they are excited and nervous about starting middle school.
Good news... today, Syd got a package from Locks of Love. They finally approved her wig application. In the package was a molding kit, to make a mold of her head. (that should be fun), and sample wig color choices. So as soon as she starts feeling better, we will plaster her head, and get it sent back to them. From there, it takes 4 months to make and receive the wig. It will probably get here around Christmas.
That's all for now. Thanks for checking in!!
Love, Michelle
Monday, August 6, 2007 9:57 AM CDT
Tuesday August 7, 2007 5:15pm
Hello friends,
Today was a very busy day for the family. The kids and I got up and decided that we would go school shopping at the mall. Sydney was feeling pretty crummy early this morning, so she took all of her meds, ate 3 crackers, and we waited...... about an hour and a half later, she perked up and was ready to shop. We spent 5 hours at the mall getting clothes, shoes, and school supplies for both kids. My arms feel like thay are about to fall off because the bags were so heavy. We had a great day, and had some fun. She is still not quite herself yet, but I think that each day will be an improvement from yesterday. She was only sick early this morning (so far). Tomorrow, we will be regestering for MIDDLE SCHOOL. Yes, my babies are going to middle school this year. I can't believe how fast they are growing up. I miss the days when I held them in my arms and rocked them to bed each night. Now I'm lucky if I get a high five - (from Drew) at least in public. Sydney is still a snuggler, and likes to cuddle up in bed with me at night and watch old re-runs of Fresh Prince or Friends.
Once again, I just want to thank everyone for all of the AMAZING journal entries. Sometimes, critism makes us doubt what we are doing, and it's the encouragement from friends and family that keep us going!!! We love you all!!
Until, tomorrow, Michelle
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Hello, It's Michelle 4:30pm on Thursday.
Wow, I did not expect to see all of what I'm seeing on this web site, after spending an entire day at the hospital with Sydney getting IV fluids due to dehydration from chemo sickness all night long. It's amazing and overwhelming to think that someone would question what we are doing in our efforts to raise awareness and money for the cancer that is destroying our daughter's helpless body. I would like to say a huge thank you for all of the encouraging words and support. That is what this website is about. I would like to keep it positive and about Sydney's battle with cancer. Not the negative opinions of others who do not agree with us. Please feel free to stop reading the site, (and signing the guestbook) if you can not be supportive. Our lives are stressful enough, without having to deal with critism from someone who "doesn't have a clue". Our loyalty is to our doctors and our hospitals.
A quick quote from Sydney, " I am proud of my daddy and I'm glad he is going to ride his bike to try and help raise money to save me and a whole bunch of other kids. Everybody should want them to be out riding their bikes because the kids are the future"
I am also so proud of my husband for what he is doing with the other dads, and I'm so proud of my daughter.!!!!!
Today was a long day. When we got to clinic, Sydney was feeling terrible, and was very sick. They gave her meds and 3 hours of IV fluids, and she is now perkey again. I hope it lasts for a while. We are flying to NY on Sunday for scans. Can you believe it's been 3 months already since the last scans when we found out that she had relapsed for the second time?? The results of these scans are going to be a major decision in how we continue to treat her. Please pray for wonderful results, and that there has been no more progression of disease!!!
Thanks for checking in on us, and for the journal entries. Please respect our decision, and not make our guest book a public forum for debating the Loneliest Road Campaign!
Love, Michelle
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Kevin's entry,
Before reading this entry, please review the guestbook entry made at 3:37AM this morning. I find it hard to believe this person would be so cowardice to not even place a name to their statements. Concerned Cancer Parent, Your disparaging, emotionless, and uneducated response concerning myself, fellow cancer parents, or what MSKCC has done in the cancer world, are both alarming and intolerable. We have been dealing with this monster for 3 ½ years, during which time we have educated ourselves on every tedious aspect of Neuroblastoma and any possible treatment programs existing anywhere! We go to great lengths in our humble lives to ensure our daughter gets the best treatment available and only the best and we are willing to make any sacrifice necessary to do so! We love her and cherish her more than you could possibly know and would go to any lengths to give her any chance people such as, yourself feel she does not have anyway. The other four fathers going on this ride care as much about their daughters as I do and are willing to go to the same lengths as I am to give them that chance. This ride is a chance for us to make a difference, maybe our last chance. MSKCC never came to us soliciting money of any kind! You are either misinformed or ignorant. Be that as it may, know that if your child suffers from the same painstaking disease as does my daughter I am riding for your child too! I hope to give your child another option and a bit more hope regardless of the fact you seem to sit behind your computer screen, stalking and spreading negativity. Please concentrate on spending your precious time with your child and know while doing it there is a contingent of us attempting to give you more time. I personally feel sorry for you but know you should be ashamed of yourself. We are all ultimately judged in the eyes of the lord not each other. I pray for your sake you make peace sooner than later. If you plan on posting such remarks feel free to just call me even at 3:47 AM on a Monday morning. I am more than willing to speak with you any time of the day concerning this issue. Please understand my daughter reads this site and does not understand the differences we have so they may be better dealt with personally amongst the two of us. Have a great day, Kevin
Saturday, August 4, 2007 3:36 PM CDT
Chemotherapy round 2 is over!!! Sydney is definately doing better post day 1 compared to post day 1, cycle one. She is feeling pretty puny and has a stomach ache, but is not physically getting sick. That could all change in 5 minutes, but for now, she is ok. We went to a fundraiser/benefit for our friend Jessica Rose's family today, and it was outside in the 95 degree heat. That made Sydney feel much worse, so we weren't able to stay long. She had a great turn out, so hopefully they raised a bunch of money. However, we did win 2 raffle baskets, so that was pretty cool. We're excited to pick them up to see what we won.
Yesterday, before receiving the chemotherapy, Sydney needed a red blood cell transfusion. That was a surprise to us. She has never (in 3 1/2 years), needed blood while getting chemo. It's usually a week or so after the chemo. Oh well, it's Sydney. She also has started getting the GCSF shots now. She will get one shot per day until her body starts making white blood cells on it's own. These shots will help her fight off any potential infections since her body is unable to do it.
The Loneliest Road Campaign is well on it's way. We have had an overwhelming response to the introduction of it. It is going to be so great to let the nation know how much these guys love their kids, and want to raise money for new Neuroblastoma research!!! What an amazing concept. We have has sponsorship offers, and many offers to help in other ways. Please email me if you are interested in being a part of the campaign. For more info on it, check out the website www.loneliestroad.org You'll be impressed!!
Another fundraiser coming up is the pediatric cancer foundation's 5k walk in Fish Hawk Ranch to raise money for cancer research grants. It's also a wonderful foundation to support, and we support it. The walk will be at the end of September, and there will be a "Team Sydney". If you would like to be on the team and walk in Sydney's honor, please let me know. For more info on the walk, go to www.pcfusa.org . We are hoping to have a really big team, so come out and show your suppoet for Syd.
The walk date will conflict with the Loneliest Road, so we will not be walking, we will be in Washington DC to support the 5 dads, and have a Neuroblastoma Rally. If you are interested in being a part of the rally in DC, please let us know. There will be many NB families and friends flying in to support the loneliest road campaign.
I will be updating again very soon, so please continue to check in on us. Also, please pray for Sydney, all children battling cancer, and for all of these wonderful awareness campaigns and fundraisers to be successful.
Until next time, Michelle
Wednesday, August 1, 2007 3:22 PM CDT
New update... after I updated a few hours ago, Sydney just started vomitting, and feels bad. I guess I spoke too soon.
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Early Thursday morning
Chemo is going well this week. So far, Sydney is not experiencing the nasty side effects of the irenotecan/temodar combo. She actually felt ok to play today and swim. She also continues to eat pretty normally. With the last round, in June, she didn't start getting sick until Friday night, so we are enjoying the good days, and preparing for a rough weekend. Please pray that this round goes smoother than the previous.
Also, please read about The Loneliest Road Campaign. It's really important, and the 5 fathers who are cycling across country could use your support and prayers!!!
Thanks, Michelle
P.S. I have no idea why all of my punctuation marks are shapes?? Also, Once again I have lost the pictures on the site. I am hoping to have this problem resolved soon.
THE LONELIEST ROAD CAMPAIGN
Hello Friends and Family,
I would like to share, with you, our newest adventure, and invite you all to come on board and join us. First, I must tell you why we are doing what we are doing�..
If you have been following Sydney�s journey, or any other Neuroblastoma child�s story, you are familiar with the 3f8 Antibody therapy. Sydney has attempted the antibodies twice over the past 3 years, and was unsuccessful both times, due to a condition called HAMA. However, many, many other children receiving the 3f8 antibody therapy have been successfully put into remission, and have remained there. The children who are able to complete the antibody therapy have a 60hance of lifetime survival - verses the children who do not, have only a 20hance of lifetime survival. It is the same 20hance all Stage 4 Neuroblastoma patients have all over the world. So, you can see how important it is for a child with Neuroblastoma to be able to successfully receive this therapy.
Back to Sydney�� As I mentioned before, she was not successful due to HAMA { Human Anti-Mouse Antibody }. It is a common reaction to the 3f8 mouse antibody, that basically rejects it, and makes it pointless to receive. There is no other promising therapy for Neuroblastoma available that gives us the hope and future possibilities that the 3f8 does. However, in a recent meeting with one of our doctors at Memorial Sloan Kettering Cancer Center (MSKCC), we have been given another glimpse of hope for Sydney�s future, along with hundreds of other children who have had the same problems that Sydney experienced. He has discovered a way to make the same 3f8 therapy - but instead of it coming from a mouse antibody, it can be made from a Human antibody. There is a very technical explanation, which I will give you a link to explore if you wish. But basically, in my own words, the Human antibody will not be foreign to her body, like the mouse antibody - therefore, it will not be rejected��NO HAMA!!! This new Hu-3f8 antibody should give the children who developed HAMA previously, the 60hance of survival again. Like I said before, this is all in my own words. It all sounds perfect, but there are obstacles to overcome to get this going.
You see, our doctor at MSKCC has the �recipe� to make this drug, but does not have the lab space, equipment, staff, or funds to manufacture it at MSKCC. It is up to us, the parents of NB children, to make this happen. We have to raise the money needed so that the drug can be manufactured in another lab, then our doctors can administer it in a clinical trial at MSKCC. We are all �on board� as time is of the essence for our children. If we can get this going, it could be administered to our children as soon as next year. That is amazing and it is what we are working for. We need to raise approximately 3 Million dollars to make this happen. Please do not stop reading, I am not asking you for any money. This is how we plan to raise it�.
It is called �The Loneliest Road Campaign�. It consists of Kevin, and 4 other Neuroblastoma fathers riding their bicycles 3800 miles across the country - from Sacramento, CA to Washington DC. They will begin their journey on September 10th 2007, and plan to finish in 15-16 days. Their plan is to attract as much publicity and media attention along the way to raise awareness on Neuroblastoma and raise money for our �possible cure�. It is a desperate attempt for these fathers to save their children, and we are hoping that the story will spread like wildfire and attract people to help finance the next big step in finding the cure for Neuroblastoma. Can you imagine how awesome it would feel to know that you were responsible for the missing link ($$$$) in saving the lives of so many children?? To find out more about this amazing adventure, go to www.loneliestroad.org . You can also find all of the medical and technical information on Neuroblastoma and the Hu-3f8 antibodies there.
How you can help��Pass this along and spread the word. Tell everyone you know about the Loneliest Road Campaign. Also, this trip is going to be very expensive for these guys, and you can help them in many ways. They need equipment (good road bikes, tires, helmets, spare parts, etc.). They need sponsors. Anyone who would like to be a sponsor will have your logos printed on their jerseys and support vehicles. They need gas for the support RV. RV�s get 5 miles to the gallon, so it will cost a lot for the support team to follow. They also need food and drink gift cards (Sams Club, Walmart). They need support in all of the cities they will be passing through. There will be a camera crew going along with them, and the entire trip will be documented. They need people in DC to rally with them when they finish the trip. We NEED this to be HUGE!! We need stories in the newspapers, interviews on TV, etc. If you know of a way you can help, please do so, and let us know. If you know other people who can help, please get them on board too. This is happening in just over a month. September is National Pediatric Cancer Awareness Month, and we want to nation to recognize that!!! We have to move fast. Please check out the website and do what you can to help out!!!!
Respectfully, Michelle Sims
www.loneliestroad.org - for more information
Kasmic1@yahoo.com - to contact me
www.caringbridge.org/fl/sydneysims - Sydney�s website
Monday, July 30, 2007 3:46 PM CDT
Hello,
Sydney started chemotherapy again today. It almost didn't happen because her blood counts are not where they need to be, infact some of the counts are the lowest they have been. BUT....... the restarting of the chemo depended on the platelet count, and it was close enough for us to make an argument to start anyway. The platelets needed to be at 40 but they are at 35. They are trending in the up direction, so we started. Her ANC is down very low at 0.4, she is at high risk for infections at this time, and will begin the daily GCSF shots to boost the white blood cells. Her Hemoglobin dropped to 9.3, which was 11.7 last week. We are puzzled by Sydneys blood counts, as usual. I am going to call NY to schedule her next set of scans. She is due next Monday, but obviously that will not happen. She will be pretty sick next week from the chemo, so we will try to schedule them for the following week. Right now, she feels pretty good. She has a little bit of cramping, but a heating pad is helping that. I will update throughout the week.
Thanks for checking in,
Michelle
Monday, July 23, 2007 10:30 AM CDT
Hello!! We really had a great time on our little mini-getaway to the beach. We left on Wednesday afternoon, after Sydney received her platelet transfusion. We did a lot of relaxing and swimming. The weather was really good, only a few showers and storms. We all feel refreshed, but could have used a few more days of it. The drive home last night was hard. None of us wanted to leave. I think the best part of the trip was the surfing lessons. We went to Ron Jon surf school in Cocoa Beach. Kevin and Drew actually took the lessons. Sydney played around, and I was the photographer. I took over 100 pictures of them surfing, the slide show is just a small sample of them. It was so fun to watch my boys learn to do something so cool. Drew was a natural (according to his instructor). If you can’t tell who is who in the pictures, Drew had the yellow board, and Kevin had the blue one. I told Drew, “Now you have the skills to go with the hair and the Surfer Dude look.” They had a blast.
We went to clinic this morning to start round 2 of this cycle of chemo. Unfortunately, her blood counts have not recovered STILL from round one, so we have to wait another week. They think she will need another platelet transfusion on Wednesday. Her marrow has just been destroyed over the past 3 years from chemo, and each round is harder and harder to recover from. The chemo she is on is not even supposed to make the blood counts drop much, but with Sydney and her history, all bets are off, you never know what will happen with her. I hate that we are not keeping to the schedule of the chemo, especially since she just relapsed. It scares me to death, but it is better to wait and be safe. We will just hang out around town this week, and find some fun things to do. That won’t be hard for us.
Thanks for checking in, and please pray that her counts (especially platelets) will come up this week, so she can resume chemo next Monday..
Michelle
Sunday, July 22, 2007 7:57 PM CDT
We are back home from the beach!! I will update soon, but take a look at the new slide shows: The pictures say it all. We had a GREAT time, and were sad to return home so soon. Chemo restarts tomorrow morning.
Monday, July 16, 2007 3:16 PM CDT
Hello everyone,
I am sorry for not updating sooner, but...... things have been crazy busy here over the last few days. I think I am finally finished unpacking from our 5 week stay in NY. It feels good!! I'll go over what's been happening since my last update.
Thursday night was great!! The food was wonderful, the entertainment was amazing, and we met some fantastic people!! Thank you to everyone who participated in the fundraiser. It would have not been possible without all of the wonderful volunteers who came out in the heat and set up, cooked, served, sang, and cleaned up. We had a great time, and hope everyone else did too. I just want to throw out some names of some special people who helped make the night go smoothly, John Sullivan & Andy from Cheddars, Liz Brewer and Natalie Brock and the entire Brandon Foundation, Chad Brock and the Band, Melonie Porter and Bell Shoals Baptist Church, Claire Grodrian, Sherry Tucker, and Heather Duckworth. I hope I am not forgetting anyone. After, the fundraiser, we came home to a 92 degree house. Wow, it was HOT!!
On Friday, we went to the ACH Clinic for a blood transfusion and a platelet transfusion. Everything went smoothly for Sydney, and we were released at 4:30. Immediately after that, we went to Adventure Island water park for the evening. It was lots of fun after being cooped up all day. When we got home that night, The wonderful air condition company (Brown), was fixing the unit. Around 10pm, we had our air back. It was such a blessing. It took a while to cool the house back down, but boy did each degree feel AWESOME!!!!!
Saturday, we went Wig shopping. Sydney must have tried on 50 wigs, and then she fell in love with one, so we bought it. It's the origional blond color that er hair was before she had cancer. (the same as Drew's). They look like Twins again when she has it on. It's adorable. I'll put up pictures soon. It's a synthetic wig, but looks pretty real. The only drawback is that she can not change the style. Heat will melt it. We are sending in the application for the Locks of Love human hair wig, and if she gets it, she will be able to do ANYTHING to it. Curl it, straighten it, perm it, color it....the lost goes on!!
Yesterday, we went to church, It was great, then we had a wonderful lunch at Olive Garden (Sydney's favorite). Then, it was so hot, we went over to my aunt Rhonda's house and swam in her pool for a few hours. The kids had lots of fun playing together.
Today, was back at the clinic. All counts are good except for platelets. We are expecting that she will need another transfusion on Wednesday. Also on Wednesday, we are planning to drive to the East coast and stay in my Aunts Beach condo for a few days on Melbourne Beach. It should be a nice, quiet get away before Sydney restarts chemo next Monday.
Thanks for checking in today. I hope everyone is enjoying their summer. Please continue to pray for all of the children battling cancer, and pray for a cure!!!
Love, Michelle
P.S. Incase I never mentioned it, Sydney is completely bald again. She is beautiful!!
Thursday, July 12, 2007 10:51 AM CDT
Just a quick update today - we are very busy getting ready for the BBQ fundraiser. The air conditioner is still NOT fixed. Our house got up to 87 degrees last night. The kids and I slept at my Mom's house, and Kevin stayed at home with the dogs (due to their abandonment issues). The "fix it" guy isn't coming until tomorrow to fix it. It's soooooo hot here!!!
Syd had a clinic appt this morning for a CBC. Tomorrow we are going back because she needs a red blood transfusion AND a platelet transfusion. Her counts are: ANC 1.5 (good), HGB 7.5 (bad), and plts 29 (bad). The good news is that she will be recharged for the weekend, and should feel great after getting the blood tomorrow.
That's all for this update. If you need directions to the church for tonight's fundraiser, I put them on yesterday's journal entry, so just click on Journal history, and you'll find them.
Until tomorrow, Michelle
Wednesday, July 11, 2007 10:00 AM CDT
Hello, we are home!!!! It is great to be home, but our first nite here was not so great. You see, our air conditioner is broken. It's 95 degrees outside, and we have no air. Kevin will be working hard to try and fix it before tonight. Hopefully, he can do it, or we will be calling in a professional asap. It was a miserable 82 degrees last night,in the house, and it's rising right now, as the temp outside rises. I think i'll spend the day in the grocery store where it's cool.
We are going t pick up our pooches soon. We have missed them so much!! I hope they can forgive is for leaving them and "locking them up" in a kennell for a month. Poor babies.
Syd's hair is about 1/2 gone. Today, after she took a shower, tons of it came out in the towel, and even more in the brush. I feel so bad for her. Sometimes, things are just unfair. Did I ever mention that 75 percent of kids on this same chemo do not lose their hair?? She is really bummed about it. She has a playdate this afternoon with her bud, Andrea. I think I'm going to take them to my Mom's house and let them swim in the pool. It's way too hot for them to play in our house.
Thanks for checking in. Don't forget that the fundraiser is tomorrow night. I hope to see everyone there.
Directions -
FROM I-75
Get off on hwy 60 - go left
Take 60 until you reach Lithia Pinecrest Road - go right
Stay on Lithia, and immediately after you CROSS Lumsden road, make a right onto Bell Shoals road. (do not turn on Lumsdan road, pass through the light, and then turn right on Bell Shoals)
You can't miss the church, it's on Bell Shoals, it's called Bell Shoals, and it's HUGE!!!
See you all there!!
Michelle
Monday, July 9, 2007 1:44 PM CDT
We are cleared to go home!!!! Sydney continues to improve. She is eating pretty normally now, and is still keeping everything in.
Her blood counts are ok, but still dropping. Plts - 69, Hgb - 8.5, and her ANC actually got higher 1.7 That is good news, because that is her immune system!! She will be checked in clinic on Thursday to see if she needs a red blood transfusion - the HGB is getting pretty close to (8.0)
Her next round of chemo is going to start on July 23, that gives her only 12 days of fun. We are planning to "pack it in"!!!
On the hair front, it's still trickling out. She still has a full head of hair, but it is so much thinner than it was. Time will tell what will happen with that.
Thanks for checking in again. I have laundry to do, and a RMD House room to clean.
Tomorrow, WE ARE OUTTA HERE!!!!
Michelle
SUNDAY, July 8, 2007 6:32 PM EST
NEW UPDATE - SUNDAY AFTERNOON - JULY 8
Wow, what a difference a day makes... Yesterday, Sydney started to feel much better. When we asked her how she felt, her response was "pretty good". Usually it had been "ugh" or "ok". So, she ate lunch and dinner yesterday - very small meals, but at least she ate, and she was only sick twice. Today, she has felt great!! She is eating every meal - a bowl of cereal for breakfast, part of a subway sandwich for lunch, and a bowl of mac & cheese for dinner. AND, she has not been sick once today, AND she has not needed to take any of her belly meds. Her throat is starting to have the pain in it (from the radiation), but she is eating soft things, and it helps.
On a sadder note, her hair is starting to come out. It started last night, and has continied today. It is not coming out in clumps, but is definately thinning. I pray that she does not lose it all, but if it's like the past, it will. She is devistated, of course. This was her biggest fear with starting chemo again, and it is becoming a reality. So, we will be on the look-out for some nice wigs. If anyone has any wig contacts, please let us know, because they are pretty pricy. We looked into locks of love, and we will apply for a wig, but the process can take many weeks before a child actually receives a wig. We have to send them letters of recommendation, a doctor's note, a copy of our tax return, and bald pictures of Sydney - just to apply for a wig. But in the mean time, Sydney would like a wig or two while she waits.
Anyway, we are soooooo ready to come home!! We have a check up with her dr tomorrow, and labs, and then we are out of here on Tuesday!!! We have been here a month and 5 days, but it feels like a year!!
Thanks for checking in on us, and I'll update again tomorrow.
Michelle
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Hello, I am posting from the hospital today. We are in a room because Sydney needed IV fluids again. In fact, they are going to keep her on them through out the weekend. She will not have to be in the hospital, they can give her a backpack with 3 liters of fluids, and she just has to carry it wherever she goes (because she will be hooked up to it). Her final RT treatment is in a couple hours. It will be nice for it to be over. Her blood counts continue to drop - ANC = 1.2 - HGB = 9.0 - and Plts = 79 - Dr Modak said that they will probably continue to drop for about 5 more days. He also said that he would like her to start round 2 of chemo on July 15th. I was blown away by that because we will only be home 5 days before starting. I don't think it will happen because her blood counts will not have enough time to recover from this round. But the general feeling I got from him is that he wants her to start as soon as possible, as long as her body can tolerate it. He also said that he wants it done before her next set of scans. Since it's been a while since Sydney has had chemo and extra low blood counts, I need to remind everyone that she can not be around anyone who is sick - even just a cold. She is at high risk for infections and viruses, so we have to be extra careful indoors - she should be fine outside in the open air. She is still having "issues" and has a general feeling of nausea, and cramping in her belly. She is also still not eating much of anything, and has lost another two pounds since Tuesday. The doctor suggested her seeing a psychologist again due to her being so "down in the dumps" for so long. We declined, again, and are hoping that she will snap out of it when we get home, and thigs get back to somewhat normal. I really think that her family and friends will cheer her up, along with the dogs, and being in her own house. I am also pretty confident that Chick Fil A will get her eating again. There is no Chick Fil A in NY, so she has been deprived of her favorite things. Also, Olive Garden will be much easier for her to have at home, and that can "pack on the lbs" quickly. We have no plans for the weekend. I guess we will just take it easy again, and start packing to come home.
Thanks for checking in, again, and please pray for Sydney's recovery to speed up.
Love, Michelle
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Hello friends and family,
I do not want to bug you, however, we are trying to get an estimated head count for the BBQ/concert fundraiser for Sydney on Thursday, July 12.
There have not been many advance ticket purchases, and that is fine, people are more than welcome to buy their tickets at the event.
We are asking for an RSVP, just to make sure that there will be plenty of food, tables, chairs, etc.
If you will be attending, please shoot me an email & let me know how many will be coming - # of children and adults.
Also, if you know of other people who are coming, please let me know, or ask them to email us.
Thanks, it will be a HUGE help!!
I will post directions to the church on Sydney's website next week, for those of you who do not know where it is.
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Thursday, July 5, 2007 4:26 PM CDT
Hello friends and family,
I do not want to bug you, however, we are trying to get an estimated head count for the BBQ/concert fundraiser for Sydney on Thursday, July 12.
There have not been many advance ticket purchases, and that is fine, people are more than welcome to buy their tickets at the event.
We are asking for an RSVP, just to make sure that there will be plenty of food, tables, chairs, etc.
If you will be attending, please shoot me an email & let me know how many will be coming - # of children and adults.
Also, if you know of other people who are coming, please let me know, or ask them to email us.
Thanks, it will be a HUGE help!!
I will post directions to the church on Sydney's website next week, for those of you who do not know where it is.
Love, Michelle
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Hello,
Yesterday Sydney started off pretty sick (it was coming out both ends), but then, she started to feel better for a couple hours. We went out to the July 4th celebration, in the city, and she started feeling pretty bad again. I just don't know when it's going to stop. I hate that she feels so bad. The meds are just not working very well for her. Today, was pretty much the same. She was sick a couple times in the night, and early morning, then felt ok for a few hours. She ate a breadstick and a few bites of pasta. (1st meal in 2 days). We went to see the movie "Transformers" and now we are back at the house because Sydney is sick again. She's in alot of pain from cramping, sort of like contractions. The movie was really good. Normally, I don't go for movies like that, but it was funny & full of actions & great special effects.
Tomorrow, Sydney will be having 2 treatments of radiation, to complete the 10 treatment cycle. One in the morning, and one in the afternoon. We will also see her NB dr for a check up, and she will have labs drawn again. I'm not sure if she will require IV fluids again. I sort of hope they will give it to her, since she has been so malnourished over the past 3 weeks. Then, we are headed home on Tuesday. If we knew that they were doing the 2 treatments tomorrow, ahead of time, we wouldn't have bought our tickets home for Tuesday. We could be leaving on Saturday, but the expense to change the flights is way too high, so we will wait the extra 3 days. Hopefully, Syd will feel better by then, and maybe we can do something fun.
We are really looking forward to spending 3 weeks at home, and the BBQ/Concert fundraiser on the 12th. It is going to be a great time. Yes, we will only be home for 3-4 weeks, as we are due back here in NY on July 7 for a week of scans. After the scans, she will start another round of Chemo (back at home), and by the time she recovers from that, School will be starting again on Aug 24. We will be cramming a lot of fun summer activities in those few weeks. Lots of pool time, beach time, and play time.
Well, thanks for checking in again, and I'll update again real soon!
Michelle
Tuesday, July 3, 2007 3:50 PM CDT
Another treatment down, three more to go!!!!
Sydney was feeling pretty bad, as usual this morning. She spent most of the morning on the toilet. We went to the hospital around 11:00 for labs. Then she had her radiation treatment, followed by a visit with her radiation oncologist, Dr Wolden. She said that Syd is doing great so far, and that soon, she will probably experience a burning sensation in her esophagus, due to part of it being in the radiation field. The good news is that it will be temporary, and should go away in a few weeks. (Another something to look forward to) After the RT appointment, we went back to the peds floor to get her lab results. Platelets dropped from 140 to 100, Anc dropped from 2.5 to 2.1, and her hemoglobin went up from 9.1 to 9.7 So..... things are still OK. I am hoping that they do not drop too much more. It will be nice not to need any transfusions. On the HAIR front, it's still there. So far, no hair has fallen out. I pray that it stays that way!!! After seeing her NP in clinic, we decided to give her a bolus of fluid - due to the fact that she has not been eating or drinking much. That perked her right up, and she was hungry. We went to eat, and Syd actually ate an entire manicotti!! It's been an hour so far, snd she has kept it down. I am hoping that the side effects are subsiding, and she will continue to feel better each day.
Drew has been at Camp Ronald McDonald this week. It's keeping him busy and occupied, so that's good. He's having a good time!!
Thanks for checking in, and I hope everyone has a great 4th of July!!! We will miss our family tomorrow, as we always have a huge family party and put on our own firework show!!!
Until next time, Michelle
Monday, July 2, 2007 6:43 PM CDT
Hello,
Today was a very slow day. We pretty much slept half of the day - literally. We slept in until around 10:30. Then we got ready to do to the hospital. We went for RT, and then out for lunch at a diner. Sydney ate NOTHING. Then we came back to the house and watched a movie in bed, and dozed in and out in between doing 2 loads of laundry. Sydney finally decided that she felt like eating pita bread for dinner. So, we went down to Le Gourmet ( a really good bakery, salad, sandwich place, and Syd ate a few bites and was finished. I am getting worried about her not eating. She was sick a few times today, also. We are going to see her NB doctor tomorrow after radiation, and I am hoping they will have a magic solution for us.
That's about all I have to report today. Thanks for checking in and for all of the prayers.
We also have a couple thank you's...
To Holly Wirth and June Hall - thanks for the Webkinz unicorn, trading cards, and the 20 questions game. That thing is amazing - it always guesses right.
Also, to Sydney's secret Pal - thanks for the box filled with Hello Kitty gifts. Sydney especially likes the Madlibs. They are so fun.
Michelle
Sunday, July 1, 2007 4:37 PM CDT
Hello, Sydney has had a better day today, thankfully!!! She slept in and woke up hungry. The only thing she wanted was Olive Garden breadsticks, .......SO....off we went to Times Square to the O.G. She ate one breadstick and her belly started rumbling. That was it for her, we rushed to the bathroom, and she was sick again. We came right back to the house, and she rested in bed for a few hours. She just ate another breadstick a few minutes ago, and some strawberry milk, and feels ok, so far. I am hoping that yesterday was the worst of it, and each day will continue to get better.
I have received emails about a special antibiotic that can be given to patients on this chemo to help out with all of the sickness. Sydney is NOT on it. I am familiar with it, because they also give it at ACH at home, but unfortunately, they do not give it at Sloan Kettering. I do not know why, but what I do know is that her next round of chemo will be given at home (ACH), so she will get it next time. Hopefully, it will help out ALOT!!!!
Tomorrow, we are back into the routine of going to the hospital for radiation therapy. She will have it every day next week at noon, except for July 4. No treatment on that day, which pushes her 10th dat of RT to the following Monday July 9. We have already purchased our return tickets home on Tuesday - July 10th. We are so excited to get back home with all of our family and friends, our own beds, our own kitchen to cook in, etc. (not that I feel like cooking, but if I get the urge, I can do it without sharing the kitchen with 10 other families). She will also meet with her doctors for check ups and blood tests on Tuesday and Friday. Hopefully, the week will pass quickly with NO FEVERS!!!
Until next time, Michelle
PICTURES FROM THE PAST FEW WEEKS
Kev & Syd at Hard Rock Cafe
Syd in front of the Police Boat she never got on
Drew tasting eatible bubbles at Dylan's Candy Bar
At the Statue of Liberty
Paris Hilton at the Wax Museum
Saturday, June 30, 2007 7:08 PM CDT
Hello everyone,
Well, this day did go as planned, but not as expected. I mentioned in my last entry that Sydney started to have the major side effects from her chemo last night. She spent most of the evening/night on the toilet. That finally stopped, and around 4am it all started to come out the other end, and the vomitting began. She slept in this morning and when she woke up, she said she felt better, so we decided to go to the movies. We had about an hour to waste before the movie, so we went into the Gap Kids store to look around. All of a sudden, she had that look on her face, and her hand went over her mouth, and she started running. We finally found a bathroom, but it was occupied, so we ran for the front door. Well, she couldn't hold it in anymore, and we didn't make it outside. She threw up all over the Gap Kids. I was so mad because everyone around us just stared at us, no one helped, or offered to do anything. HOW RUDE!!!! Finally, an employee brought us a bag and some paper towels, and walked away. So, SYd continued to throw up in the bag (in the middle of the store), and I wiped up the floor. Finally, the bathroom opened up, and we were able to go in and get her cleaned up, & Kevin found a manager to help out with the mess. Then, we went to the movies. Sydney still wanted to go because she said that she felt better. Half way through, she had the look again. I ripped the clothes out of the Gap Bag, and she threw up in it, in the middle of the theatre. She still would not leave. About 30 minutes later, it happened again. She was so sick all day. I just feel so helpless. It has been a few hours since all of that happened, and she has been ok. She still feels really bad, but has nothing left in her. She has not had a bite of anything all day. I am hoping that tomorrow will be a better day. We have decided NOT to go to the Yankee game tomorrow. We will just lay around and rest.
Thanks for checking in, and please pray for better days ahead!!!!!!
Michelle
Friday, June 29, 2007 2:42 PM CDT
NEW UPDATE _ FRIDAY NIGHT
"ATTACK OF THE POOPS"
Hi again, Sydney and I are at the house, not the Police station right now. We got on the bus to go, got to the marina, and we were the second group to ride the boat. Well, while we were waiting, the pain began. Her cramps were so bad, and she was crying out in pain. We rushed her to a restaurant across the street, to the bathroom, and she BLEW!!!!! After, the cramping and sharp pains have continued, so we got our very own police escort back to the house It's good to know people in high places, right!! She has taken her meds, and is feeling a little better, but wants nothing to do with eating dinner. I hope she feels better tomorrow, however, I fear that this is just the begining.
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Hello,
It feels so nice to know that round one of Chemo is OVER!!! Actually, it's more like round 14 or something like that (I've lost count over the years). But, it's round one of this relapse phase. Even though we are finished, and the side effects are not that bad, we are NOT in the clear. They told us that over the next 3 or 4 days, she could still get pretty sick. I guess we will just wait and see what happens.
Tonight, we are taking a tour of the police station, and taking a police boat ride down the river. The temperature is not as hot today, so it should be nice (if it doesn't rain). It's kind of overcast, and it has rained every night this week.
Tomorrow, we are going to Dylan's Candy Bar. It's so much fun there. When the RMD House goes there, each kid gets a bag to fill with whatever they want. It's a real treat!!
Sunday, we have tickets to the Yankees game. As of right now, Sydney has no interest in going, but either way, Kevin and Drew will go and have a good time. We will just have to see how she feels then.
Her blood counts are OK, they are starting to drop already.
Her ANC (immune System) is at 2.1 (normal, but was 2.8 Monday)
Her HGB (red cells) are 9.1 (below normal - will need a transfusion if they go down to 8)
Her PLTS (platelets) are 136 (below normal, but OK) they were 186 on Monday - she will need a platelet transfusion if they go down to 25.
So, right now, things are moving in the downward direction, but that is expected on Chemo and radiation. The question is...How far will they drop???? Time will tell.
Syd feels OK today - pretty much the same as yesterday. She is eating a little better, but still not pooping. It's been 5 days. She is down to 59 pounds, she started before surgery at 69 pounds.
Well, that's about all for now. I'll try to take lots of pictures this weekend to put on the site. Thanks for checking in, and please pray for NO FEVERS!!!! We are hoping to go home on July 10!!!! Thanks for checking in...
Michelle
Wednesday, June 27, 2007 1:47 PM CDT
Thursday June 28
Another toxic day......Another round of poison......Another Zap of radiation.....Just a normal day in the life of a cancer patient......
Can you believe that???? How is it possible that this is normal for so many poor people - CHILDREN-????
Sydney did actually pretty well today. I think it was her easiest day so far. Her Megase kicked in today,, and she ate 3 meals (small), but at east she ate. I think that is what made her feel better. She slept alot also. She became pretty moody today - and was in rare form for about an hour this afternoon. I couldn't believe how rude she was being. I was so embarrassed, and had to apologize to so many people. But, she was miserable, and had a right to express herself...Right???!!!??? At one point, she was ignoring these 2 ladies who were tring to talk to her, and I overheard one say to the other " I don't think her hearing aides are turned on" (She doesn't wear hearing aides, she just wants you to eave her alone!!!!!) I got a laugh out of that.
Anyway, I am thankful that tomorrow is the last day of chemo.
The meeting went well last night, but I am not ready to talk about it onthe site yet. There are a few details that need to be figured out, then I will let you all know what is going on with it...Stay Tuned!!!
That's all for tonight, thanks for checking in!!
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Hello again,
Chemo and radiation are finished for the day. Sydney is still having issues with cramping, fatigue, and today nausea. However, no throwing up. Sometimes it feels better just to throw up, but she can't. She is sleeping in bed again, trying to rest off the treatment. Each day gets a little worse, but really, I expected it to be harder than it has been on her. It's only day three, there are 2 more days of chemo, and 7 more RT. I'm sure the worst is yet to come.
Tonight, Dr Cheung (the Neuroblastoma Scientist, who spends most of his time in the lab), is coming for a visit to the house to speak with the NB parents. This is very unusual, especially since he came out here last week, too. Last week, he answered lots of general treatment questions, and told us about the promising new treatments on the horizon. Well, as you can imagine, after last weeks meeting, and all of the promising new options in the future, us parents, who don't know how much time our children have, want to know how we can get those treatments available sooner, rather than later. It has caused an uproar in the NB community, and people are creating foundations to raise money for these specific treatments, and we are ready to take action. Now, we need direction from Dr Cheung, as to what to do with all of the money that will be raised, to make sure it will be used like it is being raised for. Does that all make sense??? I think that is why he is coming out again tonight - to talk about one specific treatment, and how we can push it along faster. It takes lots of $$$$$$$$$$$$$$$$ to do it, but we are all very determined parents, and hopefully, it will happen. I will talk more about this new treatment, and statistics in another update - once I get more details from the meeting tonight. It's very exciting!! I hope it all works out.
Over the past couple days, we have had some old friends fly in for scans. It has been great visiting with them, and helps pass the time. Familiar, friendly faces always make me feel better!!
Well, thanks for checking in again, and please continue to pray for miracles, and strength, and for the meds to work, and that we can return home safely, soon!!
Love, Michelle
Tuesday, June 26, 2007 8:13 PM CDT
Hello,
Today felt like routine. Everything actually went as scheduled, and we only spent about 3 hours at the hosptal. We started out with RT at 9:00am. Then, we went to a local diner for breakfast. After that, we came back to the house for Sydney to take a nap. She is very fatigued from the RT, and still recovering from the surgery. Around 12:00, we headed back to the hospital for the chemo. Today, during the infusion, she had pretty bad cramping. It just hit her, and she screamed out. They gave her Atropine for that to control the spasms in her stomach. It worked pretty well. They suggested possibly a mild anti-depressant for Sydney, due to her lack of enthusiasm. She is usually so perky, and is totally not herself these past 2 weeks. The only time she is smiling is if we are out shopping. (she's such a girly-girl). Anyway, we decided against the med, because I really feel that she will return to normal once we gat back home, and she has her buddies to hang out with. So, if you're reading this (Kelsi, Andrea, or any other friends & cousins), clear your calendar, because Sydney is ready to play and have some FUN!!!! She is starting to feel the effects of the chemo a little, because she had more cramping at dinner. So far, no nausea. She didn't eat dinner at all, she just stared at her plate of Tacos, and refused to take even one bite. Then all of a sudden, she said she wanted some fresh pineapple. So... off I went to the grocery store for fresh pineapple. She ate about 3 pieces, and was finished. She is on alot of meds right now that make her sleepy, so her sleeping/eating schedule is way off!!!
Tomorrow, we can sleep in because Rt is not scheduled until noon, and then chemo is right after at 12:30.
I'll update again later. Love, Michelle
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*******************FUNDRAISING NEWS**************************
When :THURSDAY, JULY 12
Where : BELL SHOALS BAPTIST CHURCH
Time : 5:30 - 8:30 pm
$20 adults - kids FREE
Mark your calendars for a FUN night. Food provided by CHEDDARS, entertainment provided by country singer CHAD BROCK, Classic car show & motorcycle show!!!!
It will be a great, relaxing night to raise money for the Sydney Sims Family Fund!!!
Tickets can be bought at www.sydlets.com, or at Cheddars in Brandon!
WE HOPE TO SEE EVERYONE THERE!!!!
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Monday, June 25, 2007 5:23 PM CDT
I am updating today from the hospital. Sydney is in the bed lying next to me having her chemotherapy treatment. It’s all so real now, that all of this is happening. The fear in her eyes is obvious. Many people have noticed it, and mentioned that she does not seem “the same as the usual Sydney”. We are trying to stay very positive and focus on other things going on, but that’s hard when you’re sitting in a hospital the majority of the day. So far, she feels fine. Her radiation therapy went fine. The treatment lasted about 2 minutes. It takes longer for them to get her set up on the table than the actual treatment takes. I am hoping that these next 2 weeks will fly by, and we can not wait to get home. Things at the RMD House seem different also. It’s very lonely here this time, for me.
If anyone is trying to get in touch with Kevin by cell phone, don’t bother. He lost his cell phone at Hershey Park on Saturday. It fell out of his pocket on a roller coaster, and into a lake. He is waiting to get another phone until we get home, because here in NY, all of the phones cost a lot more than they do at home. The same phones are at least $100 less in Tampa. I don’t understand it. Please feel free to call my phone if you need to reach Kevin. He won’t mind talking to you on a pink razor for a couple weeks.
Sydney wanted me to let everyone know that she lost a tooth!!
Tonight there is a magician coming to the house to entertain the kids. Other than that, I have no new news to report. I’ll update again tomorrow.
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*******************FUNDRAISING NEWS**************************
THURSDAY, JULY 12
BELL SHOALS BAPTIST CHURCH
5:30 - 8:30 pm
$20 adults - kids FREE
Mark your calendars for a FUN night. Food provided by CHEDDARS, entertainment provided by country singer CHAD BROCK, Classic car show & motorcycle show!!!!
It will be a great, relaxing night to raise money for the Sydney Sims Family Fund!!!
Tickets can be bought at www.sydlets.com, or at Cheddars in Brandon!
WE HOPE TO SEE EVERYONE THERE!!!!
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Saturday, June 23, 2007 3:54 PM CDT
Hello,
I hope you all like the new pictures!!! Today, we split up as a family for the day. The boys (Kev & Drew) went on a trip to Hershey Park. A whole bus load of families went from the RMD House. They had a great time.
Sydney really wouln't have had very much fun there since she is not able to ride rides. It would have been hard for her to be there and have to watch everyone else have fun. She is just still too sore to do anything physical. Anyway, we decided to have a girls day in the city. We started off by getting made over at Bloomingdales. Syd got the royal treatment from the make up counters, as did many other girls from the house. The trip was put on by our friend Barbara - who is the president of the NY Candlelighters foundation. After getting pampered, the kids got to go up to the hoesewares department, and they had tables of cookies to decorate, a chocolate fountain, and hot dogs & Koolade. As you know, Sydney doesn't like chocolate, so she had fun with one of the employees and decorated her cookie with frosting, ketchup, and mustard. It was gross, and she even got the manager of the store to take a bite. What a charmer!!! After that, we went to Subway for lunch, and then went to a pottery store and painted coffee mugs. It has been a fun girls day!! Tomorrow, we are taking the kids to Times Square Toys R us to spend their gift cards. They have a bunch saved up, from Christmas, and throughout the year. It will be another fun day before Chemo & Radiation starts. Here are a couple pics from today.
I'll update Monday after we get back from the hospital!!
Michelle
Friday, June 22, 2007 3:31 PM CDT
Hello, We did get the RT simulation done today, so that means we will begin the 10 days of radation therapy on Monday - along with the chemotherapy. We should be able to return home in 2 weeks - as long as we do not have any problems that land Sydney in the hospital.
Also, the website is currently under construction. YOu may have noticed that all pics are missing. I was having some problems with exceeding my bandwith, so I am having to delete everything and start over. A fresh start will be good. So, in the next few days, there will be some new, more recent pics up, and maybe some old ones will return.
Thanks for checking in!
Until next time, Michelle
Thursday, June 21, 2007 3:22 PM CDT
<<<<<<< RADIATION PLAN >>>>>>>
We spent the entire day in radiology today. Dr Woldon ( the wonderful pediatric radiologist here at MSKCC) let us know that Sydney would need 10-15 days of radiation to the chest area where the tumor was removed. We agreed on 10 days. We explained to her how important is is for us to be home by July 11, and she thinks that will be no problem. We went down to get the simulation done today, and after 2 hours of waiting, they informed us that we did not have clearance from our insurance company, and it would not be happening today. So..... hopefully, they can get it straightened out by tomorrow and we will be able to get the Simulation done then. If that happens, we should start RT on Monday along with the Chemo. It will be a busy week, but it's better to get it over with instead of drag it out. That's all for now!
M
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Wed. June 20
Well, the official plan is in.....
Chemotherapy and radiation. We suspected that, but were waiting to hear the final word from the docs, which we received today.
Sydney will begin her chemo on Monday. She will be taking Temodar (which is oral) and Iranotecan (which is IV). It is a good combo of drugs that work well in conjunction with radiation therapy (RT). The IV chemo is nicknamed " I run to the can" (I'm sure you get what that means). There is not much vomiting with it, but the kids do spend a great deal of time on the toilet. Sydney's last round of it ended up in the hospital for 5 days due to her pooping nothing but blood. Her platelets are much higher now, than they were before, so hopefully, she won't have that problem this time.
We have an RT appointment tomorrow morning to schedue the simulation, and find out how soon she can begin RT. We are hoping it will be soon, because when she finished the radiation, we can go home!!!!! The chemo lasts 5 days, and the RT is probably going to be a week. We are going to push for it to begin ASAP!!!
Sydney is a trooper, and is not worried about anything except losing her hair. It is rare to lose your hair with this combo of chemo drugs (only about 10ose it), but Syd lost it last time, and expects it to come out again. We are trying to be positive, and pray that this time will be different.
Her docs are very concerned about her blood counts and that will determine how many rounds of chemo she gets. Her counts are below normal already, so they are thinking that she will not be able to tolerate more than one or two rounds. However, if her counts do not drop dramaticly, and she is not needing too many blood & platelet transfusions, they will have her do 3 or 4 rounds of the chemo. That really stinks for her, because that will carry over into the school year, and it's already going to be a huge transition (middle school), and I do not want her to have to miss 3 days a week for chemo and transfuaions. I guess we can't worry about that now, we just need to take everything one day, week at a time.
At home there is another wonderful FUNDRAISER being planned for our family. It is going to be awesome, so mark your calendars. It is on JULY 12, (a Tursday night) at Bell Shoals Baptist Church, in Brandon. The restaurant "CHEDDARS" is providing all of the food - chicken and ribs, and all kinds of delicious BBQ food, and the entertainment is provided by CHAD BROCK. He is a country singer and has had #1 hits including "Ordinary Life", and "She said Yes". He is also a morning show DJ on WQYK, 99.5 fm. He will be bringing a big band, and some other singers along to perform with him. Also, there will be a classic car show and motorcycle show. It is a night you won't want to miss. The cost is $20 for each adult, and children 10 AND UNDER ARE FREE. Tickets can be bought at www.sydlets.com, or at Cheddars in Brandon. We hope to see all of our friends out there, and get to meet lots of new friends!!
Well, thanks for checking in on us, and for all of the prayers!! We need them. The next few months will be really hard, but..... we've done it before, and we will get through it just fine. I will update again when we get some radiation dates finalized, and a plan to COME HOME!!!!!!
Michelle
Tuesday, June 19, 2007 3:34 PM CDT
New Update:
We received the pathology results today.... Active Metastatic Neuroblastoma
Obviously, this was not what we were praying for, but we knew that it was likely that it would be that. We are dissappointed, and scared about the near future, and starting aggressive treatment again, but it has to be done, and it will be done with many prayers for success. We have faith thet Sydney will make it through this phase, as she has for the past 3 1/2 years, but it will not be easy. We still do not have a "plan of treatment", but that will come tomorrow. We have an appt with the Neuroblastoma team in the morning to go over everything. Please pray that God will give Syd the strength she will need. I'll update again tomorrow.
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Monday June 18
Hello,
We had a great weekend. It was very relaxing at the beach but the water was freezing - not like our Florida water. Sydney had fun, but when her pain meds wear off, she hurts alot. She took a nap, and felt better after. She is still needing her dilaudid around the clock, but today we started to cut the dose in half, and we'll see how that goes. It is a very addictive med, and we'll have to wean her off of it or her body will go through withdrawl symptoms. She has her follow up appt with the surgeon tomorrow, and hopefully, we will have the pathology results, see the neuroblastoma team, and have a plan of treatment. That's alot to ask for, but I think they can do it.
Today, we slept in and then went to see the movie Fantastic Four. We all thought it was OK. Tonight there is a baseball themed party here at the RMD House, and they will be BBQing, and doing baseball crafts.
Sydney wants to send out some special Thank You's.....
To Brenda Cannon - for the box full of Inspirational Goodies. The kids had fun opening that box, It was SOOOO FULL!!
To my awesome Friends Tracy, Kristi, & Michelle - for the adorable Build a bear dressed like a cheerleader. She is sooo cute.
To Linda Obrian & Family - for the fancy pink Kitty build a bear. Sydney Loves Pink, and she will match everything in her room.
To Liz and Chris Sismilich - for the Shining Star Monkey, and all of the Livestrong goodies. We can't wait to get started on the book, it looks great and inspiring.
Well, that's all for now. I'll update again as soon as we know something. We do not know what the future holds for us, but we pray that the right decisions will be made, and everything will work out as it should, and Sydney will be cured of cancer - here on this Earth!!
Love, Michelle
Friday, June 15, 2007 4:00 PM CDT
Hello,
Today has been a good day for Sydney. We have been taking it easy here, and just ndoing relaxing things. We walked down to 86th street to one of our fav restaurants UNO, and had lunch today (sydney sat in the stroller). Then we took her to see the new Nancy Drew movie. Kevin slept through it, Sydney really liked it. Tonight, we are going to Central Park with some other families from the house to play kick ball(Sydney will watch) and have a picnic.
Tomorrow, we are going on a trip to Fire Island. We did this with the RMD house 3 years ago after Syd had her first surgery, and it was fun. We could relax on the beach or in this beautiful Beach house. There was great BBQ food and activities.
You're probably thinking to yourself, "I can't believe Sydney is doing all of this just 7 days after her surgery", and you're right. She is incredible, and amazing. She is fever-free, and is breathing great. The activity is good for her lungs, because it helps keep her lungs fully expanded, and she can cough up all of the junk. She is still very sore, and takes her pain meds (dilaudid) every 5 hours. She is mostly being pushed in a stroller, so I don't anyone thinking we are making her do too much. She is very happy right now.
I was really hoping for pathology results before the weekend, but oh well, maybe we will get them on Monday.
Thanks again for checking in on us, and I'll update again soon.
Michelle
Thursday, June 14, 2007 8:15 AM CDT
Sydney is officially out of the hospital. We brought her back to the RMD House a little while ago. She is still very weak, but I'm sure her recovery will speed up on her own turf. She is relaxing in bed watching tv right now. She feels pretty good, and is in good spirits!! We will just be "hanging out" for a few days resting and taking it easy. It is nice for us all to be together again!!!!
Thank you for all of the prayers that got us through this past week. It was so tough!!
I'll update again as soon as we receive the pathology report of the tumors.
Michelle
Wednesday, June 13, 2007 10:56 AM CDT
QUICK NEW UPDATE:
Syd has made leaps and bounds past the baby steps throughout the day. She has improved soooooo much just in one day. She met all of the goals the surgeon left for her to do. He said that she can be discharged once she is fever-free for 24 hours. It's been about 10 hours with no fever so far, but she is borderline (37.9c). If she hits 38 degrees c, it will be considered a fever. I have a good feeling about her coming back home to the RMD house sometime tomorrow. She was moved to a new room this evening, but it's still in the POU - one step closer to getting out. Also, we got pathology results on her bone marrow biopsies - still negative - Great news!! We are still waiting on Pathology report on the tumor that was removed last Friday. Maybe tomorrow???? That's all for now.
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"BABY STEPS"
That is the phrase for the day...."baby steps". Sydney is still improving little by little, however she is still not stable enough to move out of the POU and into a regular hospital room. We actually, got some sleep last night, that is until her port stopped working. It took about an hour to get it going again, and then all was fine. She is still needing oxygen while she sleeps, but she is seeming to hold her own while she's awake. Her bandages were removed this morning and she looks pretty good under it all. The surgery was done on her previous scar, only it extended about 5 inches, so she has a pretty significant "battle wound" to show off to everyone. It is still covered with steri-strips, but nothing compared to the huge bandages that were on it before. Her surgeon is not impressed with the rate she is recovering, so he left strict orders for her today....She has to walk 10 times today. She has been averaging 3-4 times each day, and that was forced. It's so hard to force her to do things that cause her so much pain. She also has to do lots of chest physical therapy today. That is when they pound on her back to try to break up all of the mucus in her lungs, and she can cough it out. It hurts her alot to do, and breaks our hearts, but it will help in her recovery, so we have to do it.
Her mood is better today. She actually laughed at a joke this morning. Anyone who knows Sydney, knows that she is always cracking jokes and being silly. We have seen none of that these past 5 days. So, maybe if she takes enough baby steps today, tomorrow, she will be walking to a new room (with a working TV). Our TV doesn't work, so that has been a problem too.
On the homefront, the dogs are going to be boarded. Nilla went to get her shots today, and we found out that she has heart worms. We feel terribly guilty because it is our fault. She has not been to the vet in a long time because she is so mean to everyone. She is only sweet to our family, and becomes very scary around other people. Anyway, the treatment is going to be very expensive, and if she is not treated, she will die. She has been a member of our family for 9 years, and we love her to pieces, so we will have her treated as soon as we get back home. I just hope she will behave herself at the kennel. She is being boarded on a "trial basis". Please add Nilla to your prayers also.
Well, thanks for checking in, and for all of the prayers....They are working!!!!! I will update again tomorrow, or later tonight if anything changes.
Michelle
Tuesday, June 12, 2007 4:59 PM CDT
How happy am I that today is a new day, and yesterday is over???!!!!!
Sydney had a much better night last night. Her pain seemed better controled, and her right lung has improved some. She is still needing oxygen, but not 100%. We are hoping to get out of the POU tomorrow and into a regular room. About an hour ago, she spiked another high fever. They are running blod cultures to check for infections. Overall, I would say that she is improving, but still has a ways to go.
Buddy, our dog, was found...Thank You God!!!! An angel in the neighborhood across the street found him and took him to her house for the night last night. She called me today with the greast news that she had him. He is safe and sound back at home (inside). Tomorrow, both dogs are going to the vet, and then they will be boardes for the remainder of our trip. I feeel terribly guilty that they will be "locked up: for a few weeks, but they can not be trusted in the yard.
Thanks for all of the sweet messages, and prayers!!!
Until tomorrow, Michelle
Monday, June 11, 2007 5:48 PM CDT
New update
When it rains, it pours!! Our dogs got out of the yard today and only one of them can be found. Buddy, who is Sydneys little Shi-tzu, is missing. She is going to be crushed if we do not get him back. I feel so helpless here, and do not know what to do. All of our neighbors are on the look-out, but it is not their dog, so I know it's not as important to them as it is to us. Buddy is like Sydney's therapy. He comforts her and makes her feel better when she's having a hard day. I just can not believe this is happening.............
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Monday 5:48pm
Well, as I said yesterday, what a difference a day makes. I think I jinxed her yesterday when I said how great she was doing beause around midnight, last night, things went downhill.
Her oxygen levels started to drop dramatically, and she spiked a fever of 103.5. She felt horrible and could barely breathe on her own last night. She has been put on 100xygen, and has upgraded to the full face mask. It was a very long night with absolutely no sleep at all.
A chest xray was done early this morning and it confirmed that her lungs are filled with fluid and mucus. She has no air sounds in the lower regions of her lungs at all. She an not take a deep enough breath to expand the lungs fully, to get any air down there. She is exhausted and miserable, as am I. Last night was very scary, and I pray that tonight will be better.
She has been working very hard today doing breathing treatments, chest physical therapy, and sitting up and even walking a couple times. She is so sleepy, but they do not want her lying down because it is not good for her lungs. She can barely support her own weight on her legs to walk, but she is improving from earlier this morning. Her fever has resolved with tylenol and toradol. Please pray that her lungs will heal completely very soon.
She is still in the ICU here at MSKCC. It's called the POU.. We are hoping for a better night, and a much better tomorrow. Hopefully, we will all get a little sleep tonight.
Thanks for checking in, and I'll update as soon as I can.
Michelle
Sunday, June 10, 2007 11:38AM CDT
New update,
Sydney is doing much better today. We are in the playroom right now. She is in a chair painting. What a difference a day makes. She just had her chest tube, foley, and epidural removed, and she is in much less pain. She still is having some lung issues, but is improving every hour. Thanks for checking in again, she needs me , so I've gotta run for now!
Love, michelle
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Hello, I am sorry for not updating yesterday, but it was late before everything was over, and we had no internet connection in our room.
Anyway, our 7am sudgery didn't start until 2:30pm. We spent most of the day waiting around for it to begin. The surgeon got the job done in about 2 and a half hours. We were really surprised of how quick it was. Anyway, he successfully removed a cluster of lymph nodes in her chest about 2 inches long. He believes they are active neuroblastoma, but the pathology report will confirm that in a week. He does this everyday, and knows what it looks like, so we trust his judgement. In the meantime, Sydney will recover from surgery and concentrate on feeling better.
Right now, she is in a lot of pain. Her back and shoulder hurt really bad from the very large chest tube. Hopefully, that will come out tomorrow. The epidural is not controlling the pain, so they are upping the dosage on that right now. Her lungs are "junky" so she has to do lots of breathing exercises which hurt her. They say she is doing great, but she looks pitiful, and is miserable. She has a fever, which they say is normal, too. Hopefully, tomorrow, she will feel much better. Right now she is in the POU unit at MSKCC room 250B. She might be moved into a regular room tomorrow if the chest tube comes out.
Thank you so much for the prayers and words of encouragement. They really helped. Please pray for a speedy recovery, and for the doctors to make the best decision possible for her next course of treatment.
Syd wants to send out a special Thank you to the Long Family (Andrea, Emma, and Estelita, & the boys) for the Sherbert Bunny she received this morning. She loves it.
Also, to Syd's secret Pal, we don't know who you are, but you made her day yesterday with the Pig Plush, and the Hello Kitty Stuff. Thank you!!!!
Until later, Michelle
Thursday, June 7, 2007 9:55PM CDT
Thursday nighy - just before bed, just before surgery,
We have had a great past 2 days. We walked a ton, shopped a ton, and ate a ton. It has been lots of fun. As we prepare for bed before the big day, Syd has expressed nervous feelings of worry about the surgery. This is the first she has mentioned it at all. I think we have kept her so busy that she hasn't had a moment to think about it. She is scared, but we will be there to hold her hand as ahe falls asleep, and will be there holding her hand when she wakes up. I am scared for her too. Thank you for all of the special prayers for her and our family, we really need them. I will update tomorrow, sometime after the surgery when I get a chance.
Until then, Michelle
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Tuesday June 5
Hello,
We spent about half of the day at the hospital, then the other half seeing the new Pirates movie.
We feel pretty good about her surgery. She has about 2cm of tumor (lymph nodes) in between her esophegus and aeorta. At least that is what it looks like on the MRI. Dr LAQuaglia is the surgeon, and he is going to go in from the same scar as he went in during her first surgery 3 years ago. It will probably extend a few inches, as he will need to go further up her back. The surgery will be at 7am, and will probably not last as long as her previous (7 & 1/2 hours), he feels like it will be about half that. She will have her port accessed, along with an IV in each arm, an arterial line, an epidural for pain, a foley, and a chest tube. He thinks that she will be able to come off the vent when the surgery is over, which is good. It is really hard to see your child on a ventilator. She should be in the hospital for about 7days, and the pathology report will take about 7days to come back. She is also having bone marrow biopsies while she's under. When the pathology report comes back to confirm that it is or is not Neuroblastoma, a treatment plan will be discussed. The chances of it NOT being neuroblastoma are very slim, but we can pray for that anyway. Most likely, she will have radiation and chemotherapy after the 7 day recovery.
Tomorrow, my 2 sisters (Kandace and Terri) are flying in to see us for a few days. We will do the tourist things like Times Square, China Town, Statue of Liberty, & Central Park. It should be a fun 2 days ahead, and then lots of down time.
Thanks again for checking in on us, and please pray for God to give us all strength, and keep Sydney safe during her surgery.
Michelle
Monday, June 2, 2007 2:15 PM CDT
We made it here to Ny. We were delayed due to all of the storms, but finally arrived safely. Our room # is 511 here at the Ronald McDonald House. We are consulting with the surgeon tomorrow morning at 8:00am, then visiting with our Neuroblastoma docs, and doing any pre-op tests that need to be done. It could be a long day, but I'll update with "the plan" as soon as I can sometime tomorrow.
Michelle
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Sat June 2
Hello friends,
We are very busy and stressed out packing right now for our trip to NY. It's hard to pack when you don't know how long to pack for. We have been doing laundry, trying to find all of the electronic chargers, and matching them to the appropriate gadgets, and labeling them. We have 1/2 of a bag with just chargers in it. It's such a mess. Things and clothes are scattered all over the place. It's been raining for 2 days thanks to tropical storm "Barry", so the mood is gloomy. The kids are off at friends houses right now, so I could "organize everything.
Disney was fun, even though it rained. We got a phone call from our dr in Ny on Thursday. She said, Syd's surgery has been moved up to Monday, so we need you here tonight for Pre-op tomorrow. We had just arrived at Disney. I think I had a mild heart attack. I was like... WHAT??????? anyway, after explaining that we could not jump on a plane at their beckon call, they changed it back to the origional schedule. Pre-op on Tuesday, and surgery on Friday. We are pretty nervous about the operation. It's called a Left Thoracotomy. I had no idea what that meant, so I Googled it. BIG MISTAKE...... On Google, it says, lung removal or partial lung removal for Lung Cancer. Well, as any Mom would, I freaked out.. No one told me that Sydney has Lung cancer. Anyway, to make a long story short, they are not removing her lungs. I immediately called the surgeon, and the Neuroblastoma team wondering wat the heck was going on. The surgeon is taking the same approach, as if to remove a lung, but is not removing a lung. She will be cut open from front to back, between the ribs, and he will explore the area, and removes anything that looks abnormal. They are still not exactly sure where the spot is. It is somewhere in the chest. I pray that it is not in an organ, especially the lung. Please pray that the surgery goes smoothly, and that she has no problems recovering. It will be a pretty big one.
Well, I guess my break is over, I need to get back to packing. Thanks for checking in and please continue to check while we're in NY. I will update as much as possible, and will get some new pics up on the site soon. Sydney and her surgeon need your prayers!!!!!! As do Kevin, Drew, and I. It will be a difficult next week or so.
Until next time, Michelle
Tuesday, May 29, 2007 7:36 AM CDT
It is officially summer!! School is OUT, report cards are in, and we are very happy. Sydney made the honor roll, and Drew made principal's honor roll. They both did fabulous!!
We spent the day at the beach yesterday with family. It was lots of fun. Today, we plan on spending at home, cleaning the house, doing laundry, and tying up all loose ends. We have the rest of the week reserved for FUN ONLY!!!! Wednesday, we are going to a water park (adventure Island), and we are going to use our Disney passes for the last time, in a while, on Thursday and Friday. We will be meeting some family in Orlando and plan on having a "Magical Time".
We will mostlikely be flying out of here on Sunday for NY, which will mean that Saturday will be laundry and packing day.
I am expecting to get another call from NY today or tomorrow with all of the details of the upcoming trip/
Thanks for praying for Sydney, and thanks for checking in on us. I will add some new pictures as soon as I figure out why all of the other pictures keep disappearing. I have 2 computers, a Mac and Toshiba. On the Mac, none of Syd's pictures are on the sight, on the Tosh, all of the pics are there. I'm not sure if it's just my computer, or if anyone else out there can not see the pics.
I'll update again soon,
Love, Michelle
Sunday, May 27, 2007 6:45 AM CDT
Hello everyone,
The fundraiser for Sydney, yesterday, was a huge success. I want to thank everyone who came out ane helped supprt our family yesterday. It was a day full of fun. I hope everyone had a great time!! The day would not have been possible without the help of Valerie Richards, Dyantha Fragomeni, Chris Tortorella. & Vicky Hudson (my Mom), and Claire Grodrian. These ladies worked soooooo hard to pull everything together, and put in so many hours. I can not thank you enough!! We raised a lot of money. The final count is not in yet, but is is somewhere between 9 and 10 thousand dollars. WOW!!! We are very blessed!!
There were so many other volunteers who came out and worked their fannies off yesterday, and we appreciate you too..... Missy Hanney and her mom, Kandace Sismilich, Liz and Chris Sismilich, Susan Henderson, All of our Grill Masters, Marty St. Lous, Sherry Tucker, Holly Wirh, The ladies from the Pediatric Cancer Foundation, Treva and Bill Davis, Christine Rabel, Our beautiful face painter, Michelle Soto, Lauren Lanier, and so many others. Thank you. If I left your name out, please remind me so I can add it. It was a crazy day yesterday, and I tried to remember everything, but Im sure I forgot someone.
On to other news, Sydney's surgery is scheduled for June 8. That is on a Friday. We will most likely be flying out next weekend to get settled and get all of the pre-op things done. We do not have all of the details of "the plan" yet, but we are happy to finally have a date.
Thank you for checking in, and please continue to pray for Sydney and her complete healing here on Earth!!!!
Love, Michelle
Wednesday, May 23, 2007 12:33 AM CDT
Anyway.... Still no news from NY... Very Frustrating. I will get that info on here as soon as I hear.
Good news!!!!!! The MRI that 
Sydney had here in Tampa of her spine was NORMAL!!! The L4 vertabra does not have cancer in it. It was a mistake!!! YEAH, Praise God!! We are happy about that. However, that does not change the plan for Surgery, Chemo & Radiation due to the new spot behind the heart, and the activity in the femur.
Here are the directions to the Picnic in the Park Fundraiser this Saturday...
From I-75
Get off on the HWY 60 exit - Go East
Take 60 until you get to Mulrennan (about 7 miles or so)
Turn Right on Mulrennan (which changes to Pearson about a mile down the road)
Follow Mulrennan/Pearson until you come to Bloomingdale Ave.
Turn Left on Bloomingdale, and follow it until it dead ends.
The subdivision on the left is Twin Lakes.
Turn left into Twin Lakes, and the Park is on the left!!
There will be Balloons and tents set up. You can't miss it!!
By the way, MARTY ST LOUIS from the Tampa Bay Lightning Hockey Team will be there! It's going to be great!!!
Thanks for checking in, and I'll update very soon!!
Michelle
Monday, May 21, 2007 12:29 AM CDT
Hello everyone,
Gosh, it seems like it's been FOREVER since my last update. I am really sorry about that. I know that you have been checking in, and there has been no update. So, here's the update....
We still have no news on anything regarding her surgery and the whole NY trip. She had her second MRI Friday morning (a very traumatic experience), and we do not have any results yet on it. The team of doctors who deal with Sydney are supposed to meet tomorrow night (Tuesday), and come up with a plan. I know I said that last week, too, buy what can I say. Things change so fast in the world of cancer. The surgeon is back from vacation, and will be at the meeting, so, hopefully, there will be a date decided on for everything. All I know is that it will probably be soon, especially if the "spot" on her spine is cancer. I am expecting to hear from them on Wednesday, f not, they will be hearing from me. I feel like we are wasting time just sitting here, and it's giving her cancer time to take over. She has been having lots of little pains here and there. That is how she was at diagnisis. It scares me to death. Her headaches are getting to be frequent, and she has been having dizzy spells.
We were in West Palm Beach all weekend at a craft fair. I received a ton of emails while I was gone, but had no computer with me. I was checking them through my cell phone. I am trying to go through them all today and get out the responses. I am not ignoring you, but really, there were a ton of emails.
I really appreciate all of the offers to help at the fundraiser. We have collected a ton of GREAT items that will be raffled off. I hope we have a good turn out. I am guessing that we will be flying to NY a couple days after Memorial day (next week), so we would love to have this one last opportunity to see all of our friends and family and say our good byes. We expect to be there 4-6 weeks. I will post directions to Twin Lakes Park in a few days for all of you who wish to come on this Saturday, May 26 from 12-3pm.
Thanks for checking in, and I'll update again real soon,
Love, Michelle
Thursday, May 17, 2007 7:27 AM CDT
MRI is scheduled for Friday mornng
..............................................................................
Hello again, we actually did get a call from Sydney's doctor this evening. Unfortunately, we still do not have a plan of action. The surgeon is on vacation this week, so he did not have a chance to look at her scans, and book a surgery date. We will wait on him to return before deciding on a date. On another note, the rest of the team of doctors did meet today, and they have decided that we need to do another MRI, this time of her lower spine because of a "suspicious malignant lesion in the L4 vertebral body". That is straight from the PET scan. I did notice that before, but since it is not noted on any of her other scans, I assumed that it was a "mistake". The new MRI is to rule out whether is is another true new spot of cancer or not. I am just beside myself. I feel like screaming at someone...."WHY?????? is this happening????" It makes me so sick. My poor baby does not deserve this, no child does. So, tomorrow, I will be trying to arrange an MRI before Friday. (I need a miracle for that). Also, Sydney and I will be leaving on Friday for West Palm Beach for a craft show to sell Sydlets. Wish us luck!!!
Please pray that the "other new spot" is nothing!!!
Michelle
******************************************************************************
Hello,
First let me say a huge thank you to everyone for all of the encouraging emails and nice messages in the guestbook. It really lifts the spirits, and makes us feel so much better to know that we have such a big support system. Things have been pretty quiet around here since we returned home from NY. Just the normal activities, like school, playing in the yard, cooking dinner. We like the normal stuff, and it’s all about to change. We still have had no word on Sydney’s surgery date. The team of doctors is supposed to have a meeting this evening to make the big decisions, and hopefully, by tomorrow I will get a phone call. I will update as soon as I know anything.
On the fundraising front, some friends of mine are putting together a last minute fundraiser as a “send off” for our family. It will be on Saturday, May 26 from 12-3pm at the Twin Lakes Park in Valrico (Twin Lakes neighborhood). There will be food, fun, and a silent auction, and even an appearance or two from some well known community figures. Volunteers are needed, so if you are interested in helping out, just email me and I can lead you in the right direction. Kasmic1@yahoo.com We are hoping to have a large crowd, even though it is short notice, so if you can help spread the word, and advertise for us, that would also be fantastic!!
Thanks for checking in, I will update again very soon!!
Love, Michelle
Friday, May 11, 2007 11:51 AM CDT
Saturday, May 12
We are back home in FL. She had her MRI last night, and we will just wait here at home for the plan of action. They should be calling us by Wednesday of next week and will let us know when to return to NY for the surgery and all that will follow. I am hoping that Sydney will be able to finish school before we leave again. We are ok. It's soaking in, and we're just sort of going through the motions of life. Lots of prayers. I'll update again soon. Michelle
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Friday may 11
OK, we got the news. Yes, there is a new spot of cancer in Sydney's chest. It is behind her heart, but they are not really sure if it's a node or what. An MRI is being scheduled to determine exactly what we are dealing with. What we do know is that it is Neuroblastoma, she will need surgery to remove it, followed by radiation and chemotherapy. I was so praying that I was wrong yesterday, but sometimes a Mom just knows. I've had a pit in my stomach for a few weeks, and I just knew that something was wrong. I was expecting there to be a problem in the leg, but I was totally shocked to hear that it is in her chest. I am so scared for her. I feel sort of like we are starting over. We had such a fun summer planned with beach trips, water parks, disney and sea world. Instead, it will be filled with hospital stays, and blood transfusions. I am trying to be positive, but at this very moment, it is so difficult. It seems like Sydney can't catch a break with this disease. I am just asking for prayers for her at this time. That's all anyone can do. The best surgeon in the country will be doing her surgery so we feel good about that. I do not know what else to say right now.
Thanks for checking in on us
P.S. At home, we were trying to plan some sort of fund raiser for Sydney's medical fund, but we could not get anything organized. If anyone has any ideas, please let us know because I think, now more than ever, we need to have one.
Thanks for checking in, and I'll update again soon, when we have a game plan!
Love, michelle
Thursday, May 10, 2007 12:12 AM CDT
Today has been a day full of emotions. It's 1:00 and we just returned from the hospital, when it should have been a quick, 45 minute scan, that began at 8:00am. The MIBG scan started and I was watching it like a hawk. To me, everything looked ok, pretty much the same as it was in February. After the full body scan, they do a spec scan that goes around the body in a circle. After the image is taken, they slice it up to see it all the way through. Anyway, while that was ging on, I noticed the tech acting "funny". She made a phone call, then left the room. She came back in with a few other people and they were all whispering and pointing at Sydney's scan. I was starting to lose it, and I broke down crying. No one would tell me anything. A man took me out of the room, and asked me to relax and that they did not want me to jump to conclusions. Everyone but the tech left the room, and she proceeded to tell me that they needed to repeat the left leg portion of the scan, and after that, they wanted to move her to another scan machine to repeat the spec part, and add a CT scan to it for a better image. They would not tell me why anything was happening, but when I was watching her slice the spec scan, there was clearly a spot on the right side of her chest/abdomin area below her mediport.
Kevin and I were so stressed out, not knowing what was happening, so we went back up to the Neuroblastoma doctor to see if they knew what was going on. Well, she pulled up the picture of the body scan and said that it looks the same. When I told her what had happened, she said that the spec part of the scan was not in the system yet, so she couldn't look at it. Also, the official report was not in the system either. So, we will have to wait until tomorrow for those final results. We did get the results of the CT scans and the PET scan. The CT's are normal, the only area of concern on that is "Acute Sinusitus", which she's already on antibiotics for. The PET scan definately shows activity in the left femur. We do not have any options for the leg. It has been resistant to all chemo, and radiation, and antibodies. However, we will continue the antibodies in 2 weeks, as soon as school is out for the kids.
Really, I do not have much good news right now. Hopefully, the MIBG report will be in tomorrow and we will have a better idea of what's going on.
Please pray that she does not have a relapse in her chest area, and that we will come up with an effective way to treat her left leg.
Oh, her knee pain that she has been having, and still has, is not cancer. Apparently she has nerve damage in her knees, especially the right knee.
Another precious life was lost last night here at the RMD house. We have got to do something that will make a HUGE difference in the world of pediatric cancer. It is just so not right!!!!
I'll update again tomorrow,
Thanks for checking in, Love, Michelle
Wednesday, May 9, 2007 6:55 PM CDT
Hello,
Another day has passed, uneventful!! Sydney had her CT scans this morning and her MIBG Injection this afternoon. We have not received any phone calls about the PET scan, so we are praying that "no news is good news". Tomorrow is the MIBG scan. That is the scan that is specific to neuroblastoma, and easy to see the "hot spots". After I see that tomorrow morning, I will have a pretty good feeling about how all of the other scans look. I will update after the scan. Our official consult with the Dr is on Friday, so I should have some definate results then.
This evening, we went to see Spider Man. We all really liked it! There were some really good previews of other movies to come this summer.
Thanks for checking in,
Monday, May 7, 2007 4:40 PM CDT
Tuesday -
Hello again,
We got up soooo early this morning for the PET scan. She had to have labs drawn at 7:00am, then go to nuclear meds to have the scan. Before the scan, she got an injection of something, then had to wait an hour for it to circulate through her body.... Then, she had the scan. The tech didn't let me watch, so I didn't get to see anything, or hear anything. After the scan, we went to our favorite diner "E.J's" and ate breakfast. It's Noon now, and we are back at the RMD House ready for our naps. We do not have any plans for the rest of the day or night. Sydney is still pretty sore from her BM's yesterday, so we are giving her another day to rest and heal before making her walk all over the city.
Tomorrow, she has Cat Scans of the skull, orbits, chest, abdomin, and pelvis at 10:00am, then she has her MIBG Injection at 2:00pm. It will be a longer day than today was, but at least we will get to sleep in a little bit!!
Until tomorrow, M
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Monday -
Hello,
It has been a LLLOOONNNGGG past 24 hours. We left for the airport last night at 5:oopm, and did not arrive here at the RmD House until after 1:00am. We had delay after delay. Our flight was delayed, the landing was delayed, our luggage was delayed, the cab line ran out of cabs, so that was delayed, etc.....
But we made it safely, and began our work-up today.
We arrived at Sloan around 9:15 this morning. We waited in the IV room for Sydney to get her port accessed and have labs drawn. After that, we went to the playroom and made a craft while waiting to see the doctor to get cleared for anesthesia. Sydney has lost another 3 lbs even after being on the megase, and she grew 1/2 inch since December. She's up to 53 inches. (only one inch short for the really cool rollercoasters - nothing a simple shoe insert can fix)!!! Everything checks out and looks good (on the outside), and now we wait stressed out all week to find out how the inside looks. Unfortunately, her knee was hurting again today, and on last Friday. She's been off the accutane for 2 weeks, so something is going on there. Hopefully, it is not disease. The accutane can cause permanent muscle/joint damage, so maybe that's what has happened????? I can speculate all day long, but we will have the end results by Friday.
Her doctor (Kushner) seemed thrilled about how Sydney looks. He said to us that he has a really good feeling about her???? After 3 and a half years, she continues to do well (desite the femur), and the more he see's her, the better he feels about her outcome. Hearing him say that, made me feel wonderful, especially since I have been having nightmares about these scans. I keep having these bad feelings, and they are haunting me in my dreams. I will be so glad when this week is over. The unknown is awful!!!! Dr Kushner said that he is the most anxious to see Sydney's PET scan, which is tomorrow. It is a very sensitive scan that will show "activity" in the body. He will be looking for activity in her left femur. I'm not sure what will happen if he finds any.
We have only had one PET before, so when I update tomorrow, I won't know anything, as I do not know what I'm looking for, like I do on the MIBG scan (which is Thursday).
Te weather is BEAUTIFUL!!! Kevin is out running in Central Park. He loves this place, especially when the weather is so perfect. Sydney is still sleeping off the day. She had her bone marrow biopsies at 11:00, and then we went to her favorite Chinese place. She ate an entire plate of food plus an eggroll. Then she came back to the room and crashed. She can't walk (using a wheelchair), and she's taking dilaudid for pain, and using heat packs. Hopefully, by tomorrow, she will be feeling a little better because it will not feel good laying on that hard scanner.
Thanks for checking in on us, and I'll continue to update each day we are here. Please sign the guestbook, it gets lonely up here. There are so many new faces. It's so sad to know that so many children are being diagnosed with cancer. We only know a few families here. Unfortunately, many have passed on that we used to know when we were here. It's just not right!!!!
Pray for a cure!!!!!!
Until tomorrow,
Michelle
Wednesday, May 2, 2007 7:54 AM CDT
Hello,
What a better week (so far) compared to last week. It's like Sydney is another kid. All of her pain is gone. No leg pain, no headaches, all is well. That reassured me that the cause of it was the Accutane. She's been off the meds for 8 days now, and almost all of the side effects are gone. Her skin is finaly starting to heal, but I think she will have some scars on her arms due to all of the huge scabs. She feels great, other than itchy skin, but that is controlled with benadryl.
Last night, we went to the last skating party of the year. She had a great time with her friends. She only fell once, and has a big bruise on her knee. Hopefully, that will heal before her scans next week. We do not want any questionable results.
We are flying to NY on Sunday. We will be there all week, and return on Saturday May 12. Her work up will go like this..
M - Bone marrow biopsies
T - PET scan
W - CT scans, MIBG injection
T - MIBG scan
F - Consult with Dr and get results
S - fly home!!!!
It will be a busy week, and we are hoping to see some of our friends while we are up there.
Please keep us in your prayers for a non stressful week to come, and clean results (NED)
Thanks for checking in,
Michelle
Friday, April 27, 2007 9:17 AM CDT
Monday April 30
Just another quick update:
I spoke with Sydney's doctors in Ny on Friday afternoon, and it seems that they are not convinced that all of her pain is from the Accutane (side effects). This is something that we disagree on.... I am completely convinced that it is just side effects because when the meds are stopped, the pain goes away. Anyway, they want to be sure before they resume any kind of treatment. So, they are planning to bump up her scan work-up to next week, instead of the end of the month. We should be flying to NY this upcoming weekend to get started. Please pray that the doctors are wrong, and that all of her scans and biopsies are clear. If everything looks good, we will go back to doing the antibody treatments as soon as school gets out (end of May), if new disease or progressive leg disease shows up, then I do not know what we will do.
Thanks for checking in again, and I'l update again soon!!
Michelle
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Hi there everyone,
I just wanted to update and make a change from my previous entry. I posted something that was incorrect.....
SYDNEY IS HAMA NEGATIVE!!!!!!!!!!
We are still not sure why her docs in NY did not call us with that information, but I did receive an email from them yesterday saying that the hama is negative. However, they havn't decided when they want her to resume the antibody treatments. I'm not sure what's going on, and why they do not want her to jump right back in. It is possible that she is borderline negative, and they want to give it a little bit longer.....It is also possible that they are concerned with the nasty side effects of the accutane, and are waiting for all of that to stop. I am just guessing, I really have no idea for the hold up. I am still waiting to hear back from them.
Sydney is slowly getting better each day she is off the accutane. She has not has a headache in 2 days, and she went back to school today. She is still having the knee (joint) pain, but it's on and off, not constant, like before. It will take a while for her skin to heal back up.
Tonight is the final performance of Guys and Dolls. Each night those kids get better and better. The play starts at 6:30 at Lithis Springs El.
Saturday and Sunday, Sydney and I will be at the Tampa Fair grounds for a craft show. We will have a Sydlet booth set up. It will be fun. Come out and see us if you're in the area.
Thanks for checking in, and for all of the prayers!!!
Love, Michelle
Monday, April 23, 2007 9:41 AM CDT
Just a quick update: Wednesday April 25
Sydney's Hama results are still positive..... Yes positive is bad not good...... we are very unhappy about this because it means that we are going a fifth month without significant treatment. Also, she has been in a lot of pain for the past 3 days. The accutane has caused major leg pain, headaches, and dizziness. We have decided to put a halt on the accutane. The side effects can be irreversable, and we do not want to take that chance. She's been on dilaudid all week for pain, and benadryl for the itchy skin. Both of her arms are bloody from shoulder to her fingertips. She is a mess right now. She has missed school all week. However, she has not missed her play. She limps through it, then we go home and she sleeps the rest of the day. I'm not sure what we'll do for treatment, if anything until her scans next month. Please pray that this break in treatments does not give her disease a chance to regroup and start progressing. Hopefully, the pain will subside once the accutane is out of her system.
Thanks for checking in.
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Hello,
I am very saddened to report that Taylor Arrington passed away yesterday. She fought her battle so hard, and is now free of pain in Heaven. Cancer is so unfair. These poor children and their parents. Please keep the Arringtons in your prayers during this time of sadnes. Taylor had a twin sister named Jordan. It's a very sad day.
I feel like I am walking around in a daze today - just going through the motions, because once again, I have been slapped in the face with the reality of this horrible thing called cancer. Life can change in a day with this disease. Like I mentioned in my last entry, a week ago, Taylor was at the mall having lunch at Ruby Tuesdays. Sydney and I talked with her and she said she felt well. On Friday night, she was at the Rely for Life at the high school, and she passed on Sunday. How can this be??? It is just not right. I can not stop crying about this, I can only imagine how her parents are feeling. There are way too many people, especially children, dying from cancer.
I have not told Sydney about this yet. I have a huge pit in my stomach thinking about how I am going to tell her that ANOTHER one of her friends has passed from cancer. I can only imagine what she will say and feel about it. Will it make her think that death is her fate??? Will it make her lose the will to fight so hard because she watched these other children fight so hard. Knowing Sydney, I'm sure it will make her determined to fight even harder, for her friends and the children she has known to have passed in the past year ( Bailee, JoAnna, Lana Beth, Zach, Taylor, and so many others ). But no child should have to go through this. No parent deserves to bring a child into the world, only to watch her suffer from a dreadful disease. I just do not know what to say anymore about it except to ask for prayers for all of the families dealing with this. You can imagine what it it like, but you really have no idea how absolutely painful it is to have a child with cancer. It's a pain so deep inside that it can not be expressed properly. Please pray for a cure. Please donate your money to pediatric cancer research. Please help spread the awareness about this problem. I am so sorry if my entry is bringing you down today. I am just home alone, and I feel like I am about to explode, and I just need to get all of this out.
On to another subject... I worked backstage at Sydney's daytime performance of Guys and Dolls this morning, and I will be doing it on Tues and Weds also. The kids did such a good job. I'm glad I was in the dark, because I was a sobbing baby watching Sydney out there, just appreciating the day and that she is able to do it. Her leg hurts today, but she went on with the show. What a trooper.
Thanks for checking in, I'll update after we get Hama results on Tuesday or Wednesday.
Michelle
Friday, April 13, 2007 7:10 AM CDT
New update - Friday April 20
Hello, first I must say that Sydney's play at school was really good. I encourage all who would like to see a bunch of taltented 10-11 year old kids, go see the play. YOull really like it!! I see some future movie stars....
I am off to FT Myers for a craft show this weekend. I'm actually leaving this morning. Hopefully, we'll sell lots of Sydlets!!! Next weekend, we will be at the Tampa Fair Grounds craft show. It should be fun, and Sydney will be there too.
Lastly, I am asking for extra special prayers for our friend Taylor Arrington. She has been put on 24/7 Hospice care, and really needs prayers for peace, and no pain, and a Miracle!! It's so sad to think that just 6 days ago, we saw her at the mall, feeling good, smiling, out to lunch with her mom and sister and friends. It really makes me appreciate every day we have, because you never know what tomorrow will bring. I hope that all who are reading this know how special every day is, and to hug your children and let them know how much you love them. Please drop by her website and send words of encouragement..www.caringbridge.org/fl/taylor
Also, I am asking for healing prayers for my little sister, Terri. She was in a car accident this week, and has been in the hospital fighting an internal infection.
Like I said before, you never know what tomorrow will bring, so appreciate today and live like there might not be a tomorrow!!!!
Medically, Sydney is OK. Her Dr expressed to me on Wednesday that her marrow is in distress. They did special IG labs that determine how well her immune system is functioning, and it's very low - below normal. That is why she is getting sick so much. We pretty much already knew that, but the labs confirmed it. Her liver functions are still elevated from the accutane, so we will continue to monitor that. Round 5 is half way over, yeah!!!! But, despite all of that, she feels GREAT!!! We will get her HAMA results on Tuesday - pray for them to be NEGATIVE!!!!! and Scans are next month.
Thanks for checking in today, and I hope everyone has a wonderful weekend!!
Michelle
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Hello,
Just a quick update to let you all know that everything is fine. We have been extremely busy with Sydney's drama practice (everyday until 5:00pm), and really, nothing else is going on.
She will begin round 5 of Accutane on Monday, and she will retest for HAMA on next Wednesday.
Next Monday and Wednesday nights, we will be at the TB Lightning play off games selling Sydlets, so if you're at the game, stop by and see us in section 101.
Nxt Thursday & Friday nights are the first productions of the Play at school. Tickets are $6.00 and the show begins at 6:30. If you can't make it, there is always the following Thurs & Fri.
This weekend, we are taking it easy at home. No big plans!!
Thanks for checking in, and please pray for our friends who are in pain and needing extra prayers in their battle with cancer.
www.caringbridge.org/fl/taylor
love, Michelle
Wednesday, April 4, 2007 9:49 AM CDT
Hello,
First, let me say thanks for all of the guestbook entries. It's fun for us to see who's checking in.
Syd is doing well. She still has that stubborn Sinus infection, but it seems to be better, it just won't go completely away. She is going to see an ENT next week to see if there is a reason for all of her sinus issues.
You may have noticed the new Black and White slideshow at the top of the website. We had those pictures taken last month by two wonderful people named Betty Huth and Ed Booth. They own Huth and Booth photography in Riverview (but they are moving to Brandon). They did and awesome Job, and I think everyone should go to them for pictures. You will love them. They are so sweet and funny, and generous.
I am also advertising for a new Sydlet today. Mother's day is aproaching fast, and we have made a precious bracelet that every mom would love to have. If you would like one of these sydlets, go to Sydlets.com, and they can be purchased there for $25.
There is not really anything exciting going on right now, other than the upcoming Play. I am working back stage right, and let me tell you, it's very stressful. I do not know how all of those teachers and kids in the play keep everything straight. But it is a lot of fun, and I can't wait to see the finished product. Once again, if you would like to see it it, there are 4 evening performances on April 19, 20, 26, 27.
Thanks for checking in again, and I'll update again soon. Please continue to pray for all of the children battling cancer!!
Love, michelle
Friday, March 30, 2007 6:18 AM CDT
Hello,
Well, as you can see, the fashion show was a HUGE success!! And Sydney and ALL of th 27 models looked gorgeous! It was so inspiring sto see those girls stand up proudly (like they were the most healthiest girls in the world). It was s night that they could put aside their treatments, blood transfusions, and other issues, and just be a princess for a night. I have never been so proud of my Sydney. The girls who normally are pushed around in a wheelchair, got up and walked (with help) down the runway. It was amazing!! The girls even got to keep the outfits they modeled. What a great surprise that was!! So far the running total of the night was $165,000. That is the amount of money they have raised (all for cancer research). Thank you to my friends and family who came out to support Sydney and the foundation! It meant the world to us, and whether you realize it or not, the money you spent is going to research, and will help to find a cure for those precious girls!! If you weren't able to make it to the fashion show, check out the slide show I have posted. I have so many more pictures of all the girls who were in it, but I could only put up so many. If you are interested in seeing more pictures, just email me, and I will send them to you. They are Fantastic!!
Sydney is still recovering from her sinus infection. She is already a lot better than she was. I guess the "Big Guns" of antibiotics are working. Her Liver function levels are very elevated from the accutane. ALT is 56 (normal is 8-29) and her AST is 52 (normal is 14-37). It is something we will watch, and hopefully, it will go down when this round of accutane is over - Sunday. Her lips are bleeding and raw, and she can barely open her mouth to eat right now, but it will heal like it always does. Other than those issues, she is doing pretty good.
Her next scans are due for May. They are adding a PET scan to the work up this time. This is because all of the other scans remain unchanged, and they want to see if the spot in the leg will show any activity. I feel like this is a repeat of last year at this same time when they did the PET scan. It did show activity, and she had to resume harsh chemotherapy, and she lost her hair for the third time. I am going to be praying so hard that it does not happen again in May. Please join me in this prayer. We would like for the spot of cancer in her left leg to be inactive. We will also retest for HAMA in a couple of weeks. We also are prayinng that it will be GONE!!!!! One more thing... The vaccine that we have been praying for for the past 2 years might be available this summer. I know .."we have heard this before"... But apparently, they made a big jump in the FDA approval process, and it is looking promising. That would be great if Sydney could start that this summer, wouldn't it???? Lots of prayers.
Sydney is so busy with Drama at school. The big production of "Guys and Dolls", presented by the Lithia Springs Elementary Drama club will be on April 19, 20 and April 26, 27. So, if anyone would like to come out and see the play, she would love the support. (she has a small roll in the play, but it is HUGE to her) Also, her cousin Kelsi is in the play. They are so cute, I can't wait.
Thanks for checking in, and please sign the guestbook. I have noticed TONS of "hits" on the site, but very few guestbook entries. We would love to know whose checking up on us.
Love, Michelle
Sunday, March 25, 2007 3:36 PM CDT
Hello,
I am sorry for the lapse in updates. Last week was Spring Break for the kids, so we left town. We spent the week in Orlando, doing the Disney thing. It was lots of fun, except that poor Sydney was sick the entire time. The Zithromax she was on, did not work at all, she only got worse all week. But, like the trooper she is, we stayed and still had fun. She was weak, so we pushed her in a stroller to save up her energy for the fun rides she likes the best. Overall it was a nice, relaxing vacation. I just wish she wold have felt better. And since she is so sweet, she decided to share her germs with the rest of us, and now we’re all sick.
She had a dr appt today, and the x-rays confirm that she has a serious sinus infection. Her lungs are clear, which is good. So now, she is on a new antibiotic called omnicef. Apparently, it’s pretty strong, much more than the Z pack. She is in bed right now sleeping, and hopefully on her way to getting better.
We got some news last week, and unfortunately, it was not the news we were praying for. First, she is still HAMA positive. She has had the HAMA for 3 and a half months now. I sure wish it would go away so she can resume her antibody treatments. For now, she is still continuing with the accutane (round four). So far, her skin is ok, but it’s very red, and she is starting to scratch like heck, so I know the lesions are coming soon.
Our other news is that we were denied the request for a special assignment for Middle school. The kids are currently on a special assignment (out of our area) for Elementary school, and in order for them to be able to stay in school with their friends, they would need a SE for Middle school. Well, it was denied because the school is over crowded. So….. they will be thrown into a brand new school next year, and it will be tough, but they are strong kids, and I’m sure they will be fine. Their two cousins also attend the new school, so they will know 2 people at least. The new school is called Mulrennan Middle School. I am not going to dispute the denial because we prayed about this decision for months, and I know that God has a reason for this. I have no clue what it is, but there has to be a good one.
We are really looking forward to the Fashion show tomorrow night. For those of you who can not make it, I will post pictures.
Thanks for checking in on us. And please continue to pray for all of the kids battling cancer.
Love, Michelle
Tuesday, March 13, 2007 8:50 AM CDT
Wednesday March 14, 2007
Just a quick update :
Sydney had her clinic appt today. Her CBC showed that her blood counts are back to "her normal" which is down the crapper!!! Everything is low again. I am not really happy about that, but it settles my nerves a bit that everything is back to normal (with the scare we had 2 weeks ago - the huge jump in the counts). She also has ANOTHER sinus infection. They just keep coming back. She is starting another round of antibiotics (she just finished a round last week). Hopefully, the Z pack will do the trick.
Unfortunately, another precious life was lost to cancer on Monday. Although I did not know them personally, please pray for the Muldoons. Their beautiful little girl, Kelly has become an Angel. This makes me crazy! Something BIG has got to be done. Somehow, someway, We are going to get the attention of America, and make a difference to find a cure (or FUND a cure).
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Here are a few pictures from our Mom/daughter pampering day for the upcoming fashion show at Saks.
Sydney opening her gift bag
This is Sydney and I with Taylor and her mom, Mary Kay
Sydney getting pampered
Tuesday March 13
Hello,
Things have been very busy, as usual!! This weekend was a fun one for Sydney, although she is paying for it now. On Saturday, she went to the Strawberry festival with her Grandpa Terry, and had a great time riding all the rides and watching the piglet races. On Saturday night, she spent the night with her friend Andrea. They ate dinner at the Melting Pot, and played Webkins all night on the computer. Then, on Sunday, she started to feel bad (a cold). But, we had big plans, so we went anyway to our Mother/Daughter pampering day at Saks Fifth Ave. It was so much fun. It is part of the Fashion show. Something special the PCF does for the girls and their moms. We had our nails and make up done, as well as trying on half of the store to pick out the perfect outfit to model in she Fashion show. She picked out a beautiful black and white sundress. She slept the entire way home, and continued to feel worse.
Yesterday, I got a phone call from school to pick her up. And she is home sick today. She is pretty much sleeping most of the time. I think she may have overdone it this weekend, and maybe was just exposed to way too many germs. Anyway, she has the same sinusitus she always has. It just seems to keep coming back. The cough, runny nose, etc. She is also complaining of neck pain. I think that is probably from a rough ride at the fair.
We will be going to the doctor tomorrow for Accutane labs, hama test, cbc, and pentamadine breathing treatment. Her docs in Ny wanted the accutane labs repeated because her liver function is high. She was supposed to restart the acutane yesterday, but we have decided to put it off a week so that her skin and body can heal better. So that means another week of no treatment. It is very scary to be off treatment when there is disease present in the body. Please pray that it does not progress, and that the hama test is negative. If it's negative, we can resume the 3f8 antibody treatments!!
I have had many, many emails about the letter writing campaign. Thank you to all of you who are sending the letters to the celebrities. Eventually, someone's eyes will be opened up, and realize how much they can help these children by donating parts of their fortune to pediatric cancer research. Personally, I am hoping to hear back from Bill Gates or Donald trump. However, as of yet, I have heard from no one. Please send me an email if you are interested in joining the letter writing campaign, or if you have any great ideas to help spread the awareness, let me know. I really want to get the media involved, but so far, only the newspaper was interested in what we are doing. I don't understand why so many people don't think this is important. Oh well, I could babble on about it forever. My emails are kasmic1@yahoo.com , or hip@sydlets.com
Also, I wanted to let people know that Sydney and I would love to start having Sydlet parties again. So, if you live in the Tampa Bay area, and would like us to set up in your house to have a Sydlet party, send me an email, and we can figure out a date that works. It's another great way to spread awareness, plus, it helps out our family.
Thanks for checking in, and please continue to pray for all of the children who are battling cancer, and for the families who have lost their children
Love, Michelle
P.S. for information on the fashion show:
Tuesday, March 27
Saks Fifth ave at West Shore Mall
6:00pm cocktails and buffet
7:00pm fashion show
The event lasts until around 9:00pm
cost :$75 - well worth it
Tickets can be purchased in advance or at the door
Come out and see the 25 beautiful cancer patients make their modeling debut. They will be escorted by many football celebrities, hockey players, etc.
It'll be a night you'll never forget!!
Thursday, March 8, 2007 5:08 AM CST
Hello everyone,
First, I would like to say thank you to everyone for all of the prayers. I know we would not have made it through this very stressful week without them.
So, as for Sydney: She is feeling so much better. The cyst on her head seems to be getting a bit smaller, and it is no longer causing her pain and headaches. The antibiotics are clearing up the infection, and her labs are closer to a more normal level. It's amazing what an infection can do to a person's body. It just throws everything all out of whack!!! Yesterday, she also had another eye exam because she has been having trouble with her vision. Her eyes are significantly worse than they were a year ago. So.... she now has "full time glasses". She likes them and looks cute. I tell her how smart she looks. She made a pretty crystal eye glass chain to wear on them. She can never have enough "bling-bling" on.
As for Drew.... He is also much better. His steroids are working, and the breathing treatments are carrying him through the hours.
Tomorrow we are going to a special cancer breakfast at Moffit cancer center. It is a meeting with all of the pediatric cancer researchers to let us know the progress they are making on some trials they are working on. It's very exciting.
We have decided to hold off another week on Sydney's next cycle of accutane. Her skin is such a mess, and we are afraid if we start her back on the treatment before the skin heals, we will be in for lots of trouble, and probaly more skin infections.
So, please continue to pray that her skin heals completely in this next week.
If you would like to see the article in the newspaper, here is a link to it. Just copy and paste it, I can't get it to work right.
http://www.tbo.com/southshore/MGBTT8JD0ZE.html
Also, if you would like to participate in our letter writing campaign, to the celebrities, to heighten awareness and funds for pediatric cancer research, just send me an email, and I'll send you a sample letter, and all of the addresses you will need to help out. We need as many people as possible to particapate, if we want to see results!!!
my email's are:
kasmic1@yahoo.com or hip@sydlets.com
Thanks for checking in, and please sign the guestbook.
love, Michelle
Thursday, March 1, 2007 9:42 AM CST
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If you would like to see the article in the newspaper, here is a link to it. Just copy and paste it, I can't get it to work right.
http://www.tbo.com/southshore/MGBTT8JD0ZE.html
Also, if you would like to participate in our letter writing campaign, to the celebrities, to heighten awareness and funds for pediatric cancer research, just send me an email, and I'll send you a sample letter, and all of the addresses you will need to help out. We need as many people as possible to particapate, if we want to see results!!! Thanks, Michelle
my email's are:
kasmic1@yahoo.com or hip@sydlets.com
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New update – Tuesday March 6, 2007
Last night was a crazy night for our family. We spent 5 ½ hours in the ER with Drew due to many complications with his asthma. Basically, he could not breathe. He was having a full blown asthma episode, and the meds we had for him, just weren’t cutting it. To make a very long story short, he was treated with 5 breathing treatments, IV steroids, and other fluids. His lungs opened up and sounded better, and we were released. He has to continue the breathing treatments, and steroids for 5 days at home, along with all of his other meds.
If it’s not one thing, it’s another around here. I suspected we would end up in the hospital this week, but with Syd, not Drew. She did not make it to clinic yesterday, but we have an appt on Wednesday. She is feeling much better, but the cyst is pretty much the same. I’m anxious to see what her lab results will be tomorrow.
Today, I’m just taking it easy at home with Drew. A day with nothing to do is exactly what I need. I feel emotionally exhausted!!! Thanks for checking in, and I’ll update again tomorrow after Syd’s appt. Please pray that everything will be ok.
Love, Michelle
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NEW ENTRY - MARCH 2, 2007
Sydney had a clinic appointment today, and the results are mixed for me. We went for a cbc, and I wanted the doctor to look at a cyst that has been growing on the side of her head. It's very small, but it is getting bigger, and it's starting to hurt her, and give her mild headaches. Anyway, her labs are totally out of whack. Normally, her counts are totally in the "crapper" Her ANC has been a steady 800-1500 for the past 3 years, including 6 days ago when it was 1200. Well today it was a whopping 6400. That is totally abnormal for her. She is on NO meds that would make that happen. Most people would jump for joy with a white count like that, but it should gradually go up, not make a huge leap like it did. Anyway, the "cyst" on her head has her doctor thinking that it's an infection. Possibly a serious infection. She started antibiotics today, and if the cyst is not better by Monday, they are going to culture it on Monday, to see exactly what we are dealing with. I am sort of freaking out because of the unknown. We do not know what we are dealing with. The high white count could explain a serious infection, that her body is trying to fight it off. The puzzling part is that she feels just fine. She has a runny nose, but nothing more. Please just pray that the cyst gets better, and that her white count levels off and doesn't get any higher. Oh well, I will try not to stress all weekend, but it will be difficult.
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Hello,
Sydney is doing pretty good. She finished round 3 of Accutane on Sunday, and slowly, but surely, her skin is starting to heal. So far, this round was the worst. The scabs are getting bigger on her face and arms. I hate that it makes her itch so bad that she literally scratches herself until she is bleeding. But, now she has a 2 week break, to revover.
There is alot going on around here. You may have noticed from my previous journal entries, that I am really speaking out on childhood cancer, and trying to inform people of the crappy statistics, and make a difference. I really hope people are listening. I have been working with a reporter on an article for our local newspaper (the Tampa Tribune)about the subject of PCR. I hope alot of people read it, and take action. I just can not sit back anymore, and I do not know what to do. I wish I had millions of dollars to give to the researchers, but I don't. So, for now, I will just keep speaking out, and writing letters, and maybe , one day, things will change for our children. It's so sad.
On a happy note, many of you may remember the fashion show Sydney was in last year. Well, it is time for it again. It is called "Fashion Funds the Cure". It is a fundraiser for the Pediatric cancer Foundation. 100f their donations goes to research grants for pediatric cancer. It's AWESOME!!! The fashion show consists of a group of girls (who all have cancer) model beautiful clothes from Saks. It's held at Saks on March 27th (my birthday). I can not think of a better way to spend my birthday, than to watch a bunch of beautiful, inspiring girls walk the runway, and raise a ton of money for their cures. They are all beautiful, and soooo worth seeing. There is a wonderful buffet of delicious foods catered by many of the local restaurants, and drinks, and deserts. There is also a silent auction. AND Saks is donating 10f anything purchased that evening to the PCF. the cost is $75 to attend. I urge as many people as possible to come. It's a great event, and it makes you feel good. The money goes to research. So start saving now, and please come out on March 27th and support these girls. (you can't go out for a nice dinner, drinks, and desert for much less than $75, so spend your "going out money for that week on the fashion show!!!)
This is a pic of Sydney from last year's fashion show. How Cute!!!
This is some of the girls from last year's show......Precious!!!
Thanks for checking in with us, and I just want you all to know how much we love you for all of your love and support. I do not think we would have the strength to get through this battle without all of you who are there for us. ****You know who you are**** Also, we have a few private issues that need prayers. can you please pray for our family, that everything will work out as best as possible.
Love, Michelle
Friday, February 16, 2007 8:27 AM CST
Here's Syd at the Westminster Dog Show
Sydney and Jake 
Sydney in the snow last week in NY
Sydney with her cousins Kelsi & Sarah
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PEDIATRIC CANCER
DID YOU KNOW…..
12,500 children are diagnosed with cancer each year.
Only 3f our Government’s Cancer Budget goes to Pediatric Cancer Research.
Pediatric Cancer is the #1 Killer of Children.
Pediatric Cancer kills more children than Aids, Asthma, Diabetes, and Cystic Fibrosis combined.
OUR CHILDREN NEED YOUR HELP!!! PLEASE SUPPORT PEDIATRIC CANCER RESEARCH!!!
DONATE YOUR MONEY TO PEDIATRIC CANCER FOUNDATIONS!!!!!
We can not count on our Government, CAN WE COUNT ON YOU??
******************************************************
New update: Tuesday Feb 20
New results: Bone marrow biopsies - NED!!!!!
Urine tumor markers (normal, - High end of normal, but still normal)
We are only waiting on the Bone Marrow aspirates results to come back. They expect them at the end of the week.
Syd is at school. She is doing just fine. Just full of itchy skin, and scabs. All normal for the accutane.
We will be at the Lightning Hockey Game tonight to sell Sydlets.
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New update - Sunday Feb 18
Kevin finished his marathon this morning in 3hours 33 minutes - Way to GO Kevin!!!!
Drew finished his 5k in 26 minutes! Way to go Drew.
We are very proud of our boys. Sydney is feeling all of the effects of the accutane. Yesterday, her poor cheeks got totally sun burnt. It was freezing cold here, and I forgot about treating her with sun screen before going outside. I feel horible because It's my fault she is burnt. The accutane is such a harsh drug - especially, with the dose she is on. It makes them 10 x's more sensitive to the sun. I'm sure her doctor will scold me tomorrow at her appt. Other than that, things are good here. We are ready for a normal week at school. And on Friday, we are going to the Broadway show, "Wicked" It's Sydney and my favorite show. We are taking the boys with us this time. It will be fun.
Thanks for checking in.
Michelle
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We made it back home. It was touch and go for a while there. The weather and the airport was such a mess. The lines were horrible, and EVERYONE was in such a bad mood. Sydney and I had seperated seats on our plane (origionally), and of course, I wanted to get that changed. They were making announcements that people could not change their seats, so not to even try it. Well, I had to wait in line for an hour and then beg to get our seats put together. Luckily, they made an exception for us. Sydney was in lots of pain from her bone marrow biopsies, and she still is now. Usually, she bounces back quicker, but this time, she is still in pain to walk. She's still sleeping now. & we are so glad to be back home in good old sunny Florida.
We got her scan results. CT scans - all good. No evidence of Neuroblastoma, and her sinus infection has completely cleared.
MIBG scan - same, stable disease in her left femur, but no progression of disease there, or anywhere else.
We are still waiting on bone marrow results, and urine. I do not expect to get them until sometime next week.
We are satisfied with the scan results. Of course, we would like to see that stubborn spot in the leg dissappear, but as long as it's not growing or spreading, we can breath easier for another 3 months.
As for HAMA, they want her to test again in 1-2 months. We will test sometime around the end of March. Apparently, her hama #'s did not come down at all on this last test. It's a bummer, but what can ya do???
Oh well, that's all for now. Thanks for checking in, and I'll update again soon. Stay tuned because I will be making some changes to the website including a timeline of all of Syd's treatment. It's always so hard to remember everything she has done over the last 3 years. Sometimes it just feels like a blur.
Also, Kevin is running ANOTHER MARATHON on Sunday (26.2 miles). Pray that his body does well. I know he will, he's in fantastic shape!!
love, Michelle
Tuesday, February 13, 2007 8:23 AM CST
NEW UPDATE _ WED FEB 14
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Hi there. Wow, the snow & ice is really coming down. It's freexing here. Today was fine. She had her MIBG scan and BM biopsies. Her Hama results are POSITIVE. BOO, we are really upset about that. We were really hoping for hama negative, I guess we will test again next month, and continue with the Accutane. I will go to the clinic in the morning to see if there are any results of the scans. Sydney is feeling ok, just really sore on her bottom from the biopsies. Nothing a little Dilaudid can't help. Tonight there is a party at the house for V-Day. I'm hoping she'll be up to it, and maybe go outside and play a little in the snow. We want to wish everyone a HAPPY VALENTINES DAY & we miss our guys at home. Love you Kevin and Drew!!!!
P.S. We DID make it to the dog show last night. It was fun. We hung out with our buddies (the Millers, Kim & Jake) www.caringbridge.org/fl/jake
We sat up in a suite, and got to go down and pet the dogs, and take pics with them. I'll put the pics up someday.
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Hello, We made it here to NY safely. A bumpy ride, but we made it. While everyone on the plane was quiet and nervous from the jerks, and quick drops, Sydney had her hands in the air (as if she was on a roller coaster). She's so funny. It is freezing here. So far, no snow, but they say it's coming tonight and tomorrow.
We just finished CT scan, and we will hang out until MIBG injection. She also had all of her labs done. All good so far, and her Urine collection is finished and turned in.
Tomorrow morning is MIBG scan, followed by Bone Marrow Biopsies. We might have some scan results before we leave on Thursday (MIGHT). Tonight, we should get her Hama results.
She restarted her accutane yesterday. And she is back on a med called Megase. She used to take it when she had trouble gaining weight, and it really worked. So, since she has lost 3 1/2 lbs since we were here 2 months ago, her docs are a bit concerned. Hopefully, she will want to eat again, and start feeling better.
We are on the waiting list for the Dog Show tonight, so I'm not sure if we'll make it there. There still is a chance, but it's a slim chance. Oh well.
Thanks for checking in, and please pray for no Evidence of Disease, and No Hama.
Michelle
Friday, February 9, 2007 3:44 PM CST
Hello everyone,
Today I am at home with the kids. There is no school today. The kids are off for "Fair Day" We did not go to the fair, and we do not plan on it. Today. instead, we slept in (we all needed that) and then I treated the kids out for lunch at Olive Garden. We ate Way too much, but it was so good. We are now just getting laundry done, and planning what we are going to take to NY on Monday. I hope it's not unbearably cold, although I'm hearing it is.
Yesterday, we went to a very special fundraiser for the Pediatric Cancer Foundation called the Breakfast of Hope. It was very inspirational as there were families who spoke of their journeys as their children battled cancer, and how important the need for research funding is. Our story is so much like the families who spoke. There wasn't a dry eye in the place of over 500 people. I really hope they raised a lot of money. 100% of the money goes to Pediatric Cancer research. That's amazing and terrific. Some of the other Cancer Societies (National & American)only give a very small amount of their money (around 3%) to pediatric cancers. In fact, there are only a few organizations that raise money for peds. Some good ones are the Pediatric Cancer Foundation, and Lunch for Life. If you are looking for a place to donate your money, I ask you to consider one of these great organizations.
Sydney is feeling pretty good. She is still not eating well at all. We compared her weight to a year ago, and she is exactly the same. (not normal for a 10 year old girl). I don't expect it go get better any time soon, as the accutane starts back up in 2 days, and it always makes her lose her appetite. She has complained of knee pain, and some leg pain (on and off). I always worry when she says anything hurts. She has also fallen quite a few times this week, and her left leg is all bruised up. The bruises are on her upper leg, where the cancer is. I am praying that those bruises do not give us false results on her scans.
She is very excited about going to NY because we just learned that the Westminster Dog show is there on Tuesday, and she is hoping to get to go see the dogs. She always makes us watch the shows on TV. She is a huge dog lover. I only hope the show does not conflict with her scan schedule.
That is all for now. We fly out on Monday morning and return Thursday night. "Turn and burn". We are looking forward to seeing some old friends while we are there. Please pray for Negative Hama results, and for NED on the scans and biopsies. I will update again after we get there!!
Thanks for checking in,
Michelle
Monday, February 5, 2007 11:16 AM CST
Hello,
Just a quick update to let you all know that Syd is feeling much better!! The accutane is finally out of her system!! She can enjoy an itch-free week.
She will be going to NY on Monday Feb 12 for scans. She will have CT scan, MIBG injection, 24 hour Urine collection, and HAMA test on Tuesday the 13th. On Wed, she will have MIBG scan, and Bone Marrow Biopsies. She will be back home on Friday, Feb 16. She also will start round 3 of Accutane on Monday Feb 12. If her HAMA is negative, we will fly back to NY after she finishes the accutane (2 weeks) for 3F8 antibody treatment. We are praying thet the hama is Negative!!!!
Sydney being silly with Grandpa Richard
Thanks for checking in
Michelle
Tuesday, January 30, 2007 11:56 AM CST
Hello,
Not a whole lot going on right now. Sydney is off the accutane. Sunday was her last day, but it is far from being out of her system. She came home from school today early because she just couldn't take the itching anymore. She said it feels like her skin is crawling. She is scabbed all over her body from scratching in her sleep. She is sleeping right now, and I took a picture to show.
It's awful!
Also, here are a few pics from the Gasparilla parade. Sorry it took so long to post them. She is going to NY on Feb 12 for a week of scans. Please pray for NED (no evidence disease). She will also have another HAMA test done while there. So, also pray that the hama is gone, and she can resume the antibody treatments asap!!
Thanks for checking in,
michelle
Wednesday, January 24, 2007 6:11 PM CST
Hi there,
Sydney is back on track with school. Monday was a bad day, but each day since has been MUCH BETTER!!
She is also finally feeling much better. The cough is almost gone, and the runny nose has dried up. She is still fighting all of the side effects of the accutane, but luckily, Sunday is her last day of it. Her face is peeling like crazy, along with her hands and feet. Her lips bleed alot (having low platelets doesn't help the situation).
We got the results from the accutane blood test. Everything was ok except for her triglicerides (sp) The normal is around 115, but hers were up to 260. I don't really know what all of that means except that it is the amount of fat in her blood. It can be serious, but apparently, they see this all the time with accutane patients, and they only worry about it if the number doesn;t come down on the 2 week break.
That's about all for now. We are just enjoying our time at home like normal people.
Prayer Request: Please pray for Kevin's mom. She had major Kidney surgery on Monday, and is really in a lot of pain. Hopefully, she will get out of the hospital soon, and have a speedy recovery. Also, today is her birthday. Happy Birthday Claire!!!
Until next time, Michelle
Monday, January 22, 2007 11:07 AM CST
Hi there,
Sydney is back in school today. She did have to go to the clinic this morning for labs, but she made it back to class before lunch. She was not a happy camper. She had the biggest frown on her face when I dropped her off. She said that she was going to keep frowning and be mad all day long, and not speak to anyone. I hope that was just a threat to make me feel guilty, and not actually what she is doing right now. She fell asleep in the car on the way to school, and that is what started all of the drama - she just wanted to go home and sleep instead of go to school. Oh well, Im sure she is doing fine by now. The labs she had drawn today were a cbc, and the special accutane blood test. We will get results of that tomorrow. As for her cbc, her counts are pretty crappy.
ANC - 0.9 (not sure what's up with that???) The kid hasn't had chemo in over 7 months.
Platelets - 57 Very low, but pretty noemal for Syd (normal range is 150-400)
Red blood cells - 10.2 also low, but normal for Sydney
It seems that her poor marrow is never going to completely rebound into the normal ranges. Please pray that her disease does not progress, because I do not know if Chemo will be an option for her. We will be going back to NY for scans in Mid February. No dates schedules yet.
We had a great time at the parade on Saturday. The kids loved throwing beads to all of the people. We were wore out by the end of the day, because we walked, and walked, and walked.......
Well, thanks for checking in, and I'll update again soon,
Michelle
Tuesday, January 16, 2007 5:42 PM CST
JAN 19
After Syd's Dr appt today, we discovered that Syd's lungs are fine. Crystal clear. So, we just have to wait for this junk to run it's course. We hope to have an uneventful weekend.
Quick Update: January 18 (thursday)
Hi everyone, this is just a quick update letting you all know how Sydney is feeling. After 4 days of antibiotics, she is still at home, sick in bed. Her fever is gone, but all of the other symptoms are worse. The cough is horribla, and her nose just doesn't quit running. She has been spending most of her time sleeping, and resting, but honestly, I think the laying down is making her worse. We are going to go back to the coctor tomorrow.
On a good note, Report cards are in and I am super proud of both of my kids.
Sydney got honor roll (4 A's and 4 B's) Pretty good for only being in attendance 16 out of 46 days.
Drew got principals honor roll (straight A's)
Thanks for checking in.... I'll update again soon
*****************************************************
Hello,
First, let me tell you what you are all checking for..... HAMA RESULTS:
Unfortunately it ispositive, she still has hama in her blood. That means that her body would reject the antibodies if they were given to her. So...... we wait some more. Our next hama test is unknown right now. The docs in NY will get back with us soon. She will continue on the torturous accutane for 2 weeks on, two weeks off. We will monitor her blood levels closely. Her next accutane blood test is Monday. She's been on it two days and is already having the symptoms like peeling skin and itches all over.
She stayed home from school today because she is still sick. Her cough seems to be worse, and her fever has been up and down. It's been 2 days of antibiotics, so hopefully soon, she will feel better. I'm not sure if she'll attend school tomorrow.
The kids are excited about this Saturday because we have been invited to be on a float for the Gasparilla Parade. It's an organization called For the Children, and they do some wonderful things in the community. We were on the float last year (throwing beads to all of the screaming people) and we had a blast. The kids were thrilled to be invited back this year
Well, thanks for checking in on us, and please know how much we appreciate all of the support and prayers. This "hama break" is a common time for relapse with NB, so I am asking for prayers that that does not happen. Also, that her poor body and mind can tolerate this round of accutane without any complications.
Until later,
Michelle
Thursday, January 11, 2007 10:37 AM CST
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Quick update Tuesday Jan 16
Sydney is not in the hospital, but she is still sick with cough and fever. She went to clinic yesterday, and they started her on antibiotics for sinusitis. Hopefully by tomorrow, she will be able to return to school and start feeling better. We will get her HAMA results TONIGHT!!!!!! I hope they are NEGATIVE!!!! I'll update with the results later.
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NEW UPDATE SUNDAY JAN 14
Prayers needed: Sydney is fighting a fever today. She has a nasty cough and is complaining of pain in her side. The fever is not high enough for a hospital admission (yet), but we are praying that it does not get any higher. She is hydrating here at home, and if she makes it through the night without being admitted, I;ll take her in to see the docs tomorrow. Her ANC is low (only 1.1) so we are hoping that's enough of an immune system to fight off whatever she's got brewing inside. Thanks for checking in!
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Hello everyone,
We are home and SOOOOOOO ready for things to get back into a normal routine. Christmas is over, Disney is over, and the kids went back to school today. I dropped Sydney off crying. It breaks my heart because she is so far behind in her work, and the transition back to school is really hard on her. She only spent about 2 and a half weeks in school this past nine weeks. Her teacher is working with her great, but Syd just feels sort of out of place there. She is begging to go back on home bound services. I am hoping that she will feel better once we get back to the routine and she gets to spend some time with her friends.
We had a great time last week spending it with some old friends, and getting to meet some new ones.
Sydney had a clinic appt today, and she had some special blood work done. She had the HAMA test, an accutane test, and a normal cbc. We will get the hama results on Tuesday night. Please pray that the hama is gone. If so, we return to NY for more treatment on Jan 21. She is also due for scans in Feb, so it will be a 3 week stay. (so much for a normal routine) If the hama is still present in her blood, she will go back on the accutane for 2 weeks, and we will retest for hama after that.
Right now, she is feeling great, just sleep deprived from our 6 days at theme parks. She will get some much needed "catch up sleep" on this upcoming 3 day weekend. We all need some catch up sleep, and some catch up laundry done.
Well, thanks for checking in on us again. I have a prayer request for a little girl, here in our area, who was just diagnosed with NB. Her name is Jessie, and she just finished round 1 of chemo. By the way, Sydney has been battling NB for 3 years now. Jan 15 marks her 3rd year anniversary since diagnosis. We've come a long way, but we've still got a way to go. Please also pray for all of the children battling and for a miracle cure for them.
Until next time,
Michelle
Can you believe that 10 of these kids have cancer??
Syd & Betty Boop
Syd climbing the rock wall
Syd and Drew With Shamu
Tuesday, January 2, 2007 8:52 AM CST
Happy New Year!!! Wow, how did 2006 go by so quickly??? My parents were right when they said that time flies by faster the older you get. We were so busy last year. I'm so glad that I took so many pictures, because I would probably forget most of it. I am so happy to report that Sydney's medical condition is still stable compared to January 2, 2006. No progression of disease has occured over this year! That makes me so happy and my prayers are that I can say same thing again on Jan2,2008,9,10,etc....
Accutane is finished. Thank you God for getting us through round 1. Syd said that she wished she were a snake so that she could crawl out of her skin. Now she has 2 weeks for all of the scabs to heal, and for all of the "new skin" to toughen up before round 2 begins on the 14th.
We are leaving on Thursday for our annual Disney/Universal trip with all of our Neuroblastoma friends from all over the country/world. It is such a fun trip to see all of the smiles on these kids faces. Just to get away from treatment and forget about it for 5 days. I have to admit, it will not be the same for us without Lana Beth and the wonderful Webster family. It is so sad that each year, we lose a family. We know how precious life is, and it'so important to cherish each moment because no one knows how long we have.
I will update again when we return. Thanks for checking in on us, and for all of the support, words of encouragement, and prayers. That's what gets us through each day.
Love, Michelle
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