History

Friday, February 25, 2011 11:54 AM CST

Sydney just came out of anesthesia. She made it through her bone marrow biopsies like a champ. She said that it hurts more this time, but I bet that's from the 4 shots she got in her thighs. Her post was clogged again today, but it eventually started working after many flushes. She is de-accessed and sleeping on the couch in the hospital waiting room. Here we will sit for probably a few hourss waiting to see a Dr about any results that may be in before we leave the hospital. Its a cold, rainy day in NY, so I don't mind being indoors.

Yesterday we made it through the long MIBG scan. Than we had a long, depressing appointment with the long term follow up Dr, where he told us all of the horrible things she has to look forward later in her life (side effects from all of the different chemotherapy drugs, and all of the places she has had radiation). Hopefully, she willnot experience all of the effects, but they need to warn us as to what to expect. Then she had a long pulmonary function test (boring).
Last night we had a lot of fun being typical tourists. We left the hospital around 2 and headed for the wax museum in Times square. We took lots of funny pictures and had a blast. We posted many of them on FB. We shopped till we dropped after that (mostly window shopped)and then finished the night with dinner at Hard Rock Cafe. It was a lot of fun. It's nice to be able to have some fun while we are up here.

I will update again when I have some results.
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THURSDAY Feb 24
Well, I had this great post about the rest of our day yesterday, but lost it all....I hate it when that happens. Right now, we are at Nuclear Medicine having the all dreaded MIBG scan. This scan gives us the most anxiety because it is the scan specific for Neuroblastoma. She is sleeping through it like a champ. I posted a pic on FB.
Last night we left the hospital at 7pm, had Thai food for dinner and went to bed by 10pm. She has had an allergic reaction the past 3 times we have been here fron either the SSKI drops or the MIBG injection (not sure which). But each time we are here, she breaks out in a rash, has migraine headaches and vomits...all rare symptoms of an SSKI allergy. Well the nausea and headaches started last night....No fun for her. Its too bad she has to take them for 2 more days.

She finished her repeat Urine collection and it's turned in. Her LDH level is 279 - worrisome because that is high, however her blood clotted slightly in the tube and that could be an indication of a false result...... lots of unknowns right now.
While she is under anesthesia tomorrow for her biopsies, she will also get her first 4 repeat immunizations. Her body is finally ready to get them, like she is a newborn baby again. All of the 5 years of chemotherapy and radiation killed every bit of protection her body had from the diseases like polio, MMR, and whatever else they vaccinate for??? So, she will be pretty sore when she wakes up.
Until later... Thanks for checking in and for all of the prayers!!!

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WEDNESDAY FEB 23,2011
Hello everyone,
We made it safely to NY. 10 minutes off the plane we witnessed a crazy man start a fight with someone over a cab. He was a lunatic. So glad he wasn't fighting for our cab (it was the one right behind ours).

Anyway, we got checked into the RMD house, room 312, and had lunch at Mc Donalds. Then we made the walk to the hospital. We are checked in.
Sydney had her mediport in her chest accessed, and lots of blood drawn from it. We are waiting to see the Dr now. She took her first dose of SSKI drops and gagged them down with a carton of milk. She literally gagged and almost puked all over the IV room. She's never done that before.

After we see a DR, we will head down to nuclear medicine for the MIBG injection. After that, we will head over to MRI for her total spine scan. We will be done for the day after that. We will probably pick up some dinner and go to bed early. We have been up since 5am. She will start her 24 hour repeat urine collection this evening, and we will turn that back in tomorrow.
That's all I have for now.
Oh yah, I forgot to bring my camera, so all of my pics will be on my phone and put on facebook. Im trying to document everything she goes through, which I have not really done before. (cameras are prohibited in the hospital, so I have to be careful!!!!)
Until tomorrow,
'Michelle

Thursday, February 17, 2011 7:39 PM CST

We are headed to NY on Wednesday, Feb 23.
On Wednesday, she will have the MIBG injection, MRI total spine, 24 hour repeat urine collection, and blood work. On Thursday, she will have the MIBG scan and her Long term follow up appointment with the endocrinologist to talk about all of her late side effects from all of her previous 5 years of chemotherapy and radiation treatments. On Friday, she will have her 4 bone marrow biopsies, and hopefully consult with her Neuroblastoma Dr to go over possible MIBG and MRI results. It will take a week to get back the urine and biopsy results.
Please pray that everything is as it should be - still NED!!!
I will update as we know things.....
You can also check in on us on Facebook.
Until next time,
Michelle

Sunday, January 9, 2011 11:10 AM EST

We will be heading to NY for repeat scans, biopsies, and repeat Urine tests in mid February. We are not doing anything immediately because the results will probably remain the same. Hopefully next month, they will be changed for the better!!

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January 6, 2011

We finally got results from Sydney's repeat Urine test. Unfortunately, the tumor markers are still elevated slightly, but not as much as a month ago. We are waiting to hear back from the Dr on what he wants us to do. She was off all medication when this test was done, so it is an accurate result. Please pray that this is not an indication of the cancer trying to return.
I will update again when we have more information.
Michelle

Tuesday, November 23, 2010 2:22 PM CST

New Update....
Final results on all scans are good!!! We are very happy about that. Bone marrow biopsies and Aspirates are negative, MRI is good, and MIBG is good.
Unfortunately, we have one red flag.... The tumor markers are up in Sydney's urine. It could be influenced by the Estrogen hormones she is taking for growth and development. We are not sure. So, the plan for now is to stop the hormones, re-take the urine test, and see where we are.
A lot of times, the first indicator of a relapse is the urine tumor markers rising. Please pray that this is not what is happening, and that it is just from her meds.
Other than that, she is doing wonderful. She looks good, feels good, and is ready for some turkey. I hope everyone has a wonderful holiday, and please continue to pray for all who are in need.

I will update again when we get the new results.

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NOV 15, 2010

We are back home after a long 3 days in NY.
We woke up at 3:30am on Wednesday morning, to catch a 6am flight. When we arrived in NY, we went to the Ronald McDonald House to check into our room and drop off all of our luggage, then we headed to the hospital. First, we went to the IV room and Sydney had her medi-port accessed and several tubes of blood drawn. Then, She was given her sski drops to prepare her thyroid for the MIBG injection. After that, we went to MRi for that scan, followed by a visit with the NB NP, and then the MIBG injection was given to her. We finished up around 3:30pm and walked back to the RMD house. Neither one of us wanted to be there, so we ended up leaving for a walk. Our walk ended up at Bloomingdales 17 blocks later. We did some Christmas shopping, checked out every floor, stopped at Dylan's candy bar before heading back to the house. We stopped and ate dinner, then went to a friends house for a short visit. We crashed when we got back to the RMD House.
Thursday morning, we woke up early and had to be in Nuclear Medicine by 7:45 for her 8:00 MIBG scan. After that, it was back up to the 9th floor procedure room for her 4 bone marrow biopsies. After that she still had to go to 3 other appointments after waking up from anesthesia. I pushed her around in a wheel chair, and we made it for an Echocardiogram, EKG, and a visit with the Encocrinologist. Sydney was craving fried ice cream, so we finished the day at a local Mexican restaurant.
Friday, Sydney woke up with a horrible migraine, and had a couple vomiting issues. We were so ready to fly back home Friday night!!!
As for results, the MIBG scan is NED (no evidence of disease). We do not have any other results yet, but I am hoping to get them soon. She has recovered from everything and is back at school today,
I will update when we get all of the results.
Thanks for checking in and for all of the prayers. If you would, please add our friend Jake Miller to your prayers. He needs them!
Michelle

Thursday, November 4, 2010 1:25 PM CDT

It's about that time again.

Sydney and I will be flying out next Wednesday, November 10 to New York for scans and the usual work up.

I will update from there.

Thanks for checking in, and please pray for NED results.

Michelle

Thursday, August 12, 2010 6:39 AM CDT

I took Sydney to New York last week for her scans, biopsies, and to see a new doctor – the Endocrinologist (Dr Sklar) to talk about growth and her lack of teen age development. So far, her MIBG scan and her MRI scans are both great – no signs of returning cancer. We do not have her urine tumor markers back yet or her Bone Marrow biopsy results, however, I expect to get them in the next few days. Her Neuroblastoma Drs were pleased in how she looks, and her overall health. She did have some problems coming out of the anesthesia (it took over an hour) and she was a complete nightmare for several hours after that. Her goal was to make me as miserable as possible, embarrass me in front of the entire clinic, and prove to everyone around of the true “junky” she is by screaming for MORE DILAUDID!!!!! When she finally snapped out of it, and all of the drugs wore off, she was back to her sweet self, and everything was ok. Of course, she does not remember any of it, but I will never forget it. Sometimes, I wish I would record how she acts after surgical procedures – she never believes how hateful she can be. It is too funny.
Anyway, the Endocrinologist had lots of graphs and charts with all of Sydney’s 6 ½ years of cancer history, treatment, and growth. It was really interesting. She is currently 56 inches tall – or 4’8”. She is WAY BELOW the 0n the growth chart for her age. The good news is that her growth plates have not fused together yet, so she does still have about 2 years of growing left. Her bone age is 12. The reason she has stopped growing or significantly slowed growing is because of all of the radiation therapy she has had to her spine and leg, but he thinks it is mainly from the spine. The other reason she is not growing is because all of the chemotherapy and radiation have pretty much shut down her ovaries. They are not producing any hormones, and that is why she still looks like an 8-10 year old girl instead of a 14 year old teenager. She is now taking Estrogen pills daily to help her body jump start into puberty, and her Dr feels that it will also help her to start growing faster. Every 3 months, he will increase the dose. Right now, she is taking a low dose – about the amount that a normal 10 year old girl’s ovaries would be producing. He is hoping that she may reach 5 feet tall, if the estrogen kicks in quickly and helps her grow.
From here, we will return to NY in November, and every 3 months after that for her usual scans and biopsies – along with visiting Dr Sklar. She will also go through some growth hormone testing while we are there in November. Hormones are scary because they add on the risk of secondary cancers, so we will most likely NOT be giving her any type of growth hormone injections, however, she still has to go through the testing so we can determine how deficient she is. She is not looking forward to it because it involves her having to have IV’s as well as using her medi-port, but she will be strong like always, and deal with it.
School starts tomorrow for Drew and Sydney, Friday the 13th. Unfortunately for them, they have every core class together (Pre AP English, Algebra 2, Pre AP US History, and Pre AP Science). Sydney is pissed because she says that Drew torments her at school, and Drew is pissed because he will be held accountable for all of the homework, and can’t get away with saying “no, we have none tonight.” Syd has Agriculture and Art for electives, and Drew has Biomedical Science and Engineering for his electives. Sydney stays bust with Piano lessons and horse back riding lessons, Drew keeps us all busy with high school football. The practices are insane – they just finished 2 a days, and it’s like 100 degrees every day. He had an asthma attack on Monday at practice. I was really worried, but he is fine. Well, thanks for checking in. I will update again whenever I have any news. Otherwise, you can keep up with Syd’s day to day on facebook.
Thanks for keeping our family in your prayers, and please continue to pray for all of the children fighting this monster of a disease.

Michelle

Sunday, July 11, 2010 10:20 AM CDT

Well, it is official - Sydney has completed the Neuroblastoma Vaccine protocol. This is the first time she has ever finished a treatment. In the past, she would experience horrible reactions, allergies, or HAMA's which prohibited her from finishing a treatment. However, this time she made it an entire year, and finished strong. She was the first patient to start the vaccine last summer, and is the first to finish. She had her final injection on July 2. We will go back to New York in Mid-August for another work-up of scans and biopsies. The decision was made by her Drs in NY to give her a break from treatment. She is officially off treatment, and hopefully, will be able to remain off treatment forever. She will continue to have her 3 month scans and biopsies for a couple of years to monitor the disease closely, and to be able to catch it quickly (if it ever decides to return). In August, she will also meet with the Long term side effects doctor and he will talk to us about future issues. We will also discuss growth hormones.

Thanks for checking in, I will update again in August, or sooner if anything changes.
Michelle

Wednesday, June 30, 2010 8:24 PM CDT

Hello again,

Sydney and Kevin are in NY again. They flew there today. Sydney will receive her final treatment of the Neuroblastoma Vaccine tomorrow. It is the end of her treatment. They will consult with the doctors also to find out what the next step is - if any.

I will update whenever we find out what the new plan is.

Thanks for checking in

Michelle

Tuesday, June 8, 2010 6:18 PM CDT

It is like pulling teeth to get results around here. Not like in NY where you get the results in a matter of hours. I actually never got any results from CHarlotte, I got them from NY after Charlotte sent them to them. Anyway, final reports per DR Kushner - NED. We are thrilled. Sydney has officially been NED for one year. WOOHOO!!!!! The kids are out of school and enjoying sleeping in and having a good time. Drew has football practice every day, followed by World of Warcraft, and hanging out with friends. Sydney is busy with friends, shopping, horseback riding, and hanging out at the pool.

Things are so good........... No complaints

Thanks for checking in. Thanks for the prayers that have made Sydney the survivor she is. And thanks for the support over the years!!!

Michelle

Tuesday, April 27, 2010 3:20 PM CDT

I think I start every post with, "well, it has been ages since my last post." And again, it actually has been ages - almost 3 months. I just can't believe how quickly the time does fly by. Sydney is doing wonderful. Her last scans were NED, obviously, or I would have posted way sooner than this. She is actually due again for scans in May. She will be having a complete work up on the week of May 17th. We are having the scans done here in Charlotte, this time. Usually, they do not let us do that with the NB vaccine protocol, but they made an exception this time. Her final NB vaccine Injection will be on July 1. She was the first HUMAN CHILD to "test" the vaccine. She will also be the first to finish the protocol. So far, it has kept her at the NED status, and we pray that it will keep her there forever. We are not sure what type of treatment will follow the vaccine, if any. It's exciting, but scary.
Syd has been keeping herself busy these days. She is finished with cheerleading, and is now taking horseback riding lessons. She rides a horse named "Oreo", and just loves it. She is doing very well in school. I can't believe the kids will be in High School next year. I am getting so old. I know I am horrible at updating the website because we are all just so busy, but Sydney does have a facebook account, and she is on it all the time. So, you can also check on her there.
I will try my best to remember to update more often, but I will definately let you all know how the scans go in May.
Thanks for checking in on us, and as always, thanks for all of your prayers and support over the years!
Michelle

Monday, February 15, 2010 5:50 PM CST

Kevin and Syd made it to NY and back home safely. She got her 6th NB injection and Bone MArrows, and Scans. So far, we have results of the MRI and MIBG scans. Both are negative !!!!! :) We are thrilled. I will update again when we get the BM results.
Thanks for checking in, and for the prayers!!!

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Friday, Feb 12

Hello,

Well, Sydney and Kevin made it to NY this morning (barely). Their original flight was cancelled due to all of the snow in NY yesterday. Now, it is snowing here at home in Charlotte. They are forecasting 3-5 inches here. That is nothing compared to DC, Phili, and NY, but Charlotte is not used to that type of snow. I am praying that their flight home tomorrow is not cancelled.

Sydney had Bone marrow biopsies this morning, followed by her NB vaccine injection. After that she had her MIBG injection, followed by her MRI. She is still in MRI now. First thing tomorrow morning, she will have the MIBG scan, then they will rush to the airport to catch a noon flight, and be home by 3:00. Unfortunately, we will not be able to get any results or talk to any doctors about how everything looks before they come home. We will just have to email them on Monday or Tuesday to get the results.

She is doing well so far, just extremely exhausted and sore. Hopefully by Monday, she will be feeling much better and be able to return to school and her normal life.

I will update again as soon as we get the results of this work up. She has had 6 treatments and only has one more to go in July. Apparently, they are already talking about the next treatment she will do when this one is over. I am not sure yet how I feel about that......

Until next time,
Michelle

Tuesday, January 19, 2010 5:28 PM CST

Hello,
The time just keeps flying by. I can hardly believe how much time has passed each time I log on to this website. Thank you to everyone who continues to check in on SYdney and our family. We are all doing just fine. Sydney was very sick last week with some sort of virus. We never did find out exactly what she had, but she did have fever, cough, runny nose, and just a general feeling of yuck!!! She was in and out of the hospital, received the big guns of IV antibiotics, fluids, many cultures done (blood, nasal, urine, etc), and missed an entire week of school. She is feeling so much better now, and went back to school today.

We had a great Christmas. We had family up here with us and it was so freezing. We drove up to Sugar Mtn and took the kids tubing and playing in the snow. It was like 12 degrees and windy. It seemed like a good Idea until we got there. The kids played while the adults sat inside the snack bar and drank hot chocolate.

I looked at the calendar a couple days ago and reflected on our life. Exactly 6 years ago (Jan 15, 2004) our lives were changed forever when Sydney was diagnosed with Stage 4 Neuroblastoma. We were given statistics, and told that her chances of survival were minimal - that she may not make it 6 months. Now looking back, I can't believe all that we have been through as a family. It has been so hard, yet we have received so many blessings through our journey. Sydney is one extraordinary girl and God has a purpose for her on this Earth. She has taught so many lessons to so many people. I know I have learned a lot from her and all that she went through. For 6 years, she has been on constant cancer treatment. She has never had a break from it, and now, we can finally see a light at the end of the tunnel. She only has 2 more NB Vaccine injections, and then treatment is over in July. I can't believe it, and never thought the day would come. It is a scary thought too. We have always had the "security" of the treatment. I just want to thank everyone for the prayers over the years, and for the future prayers. She will need them often. Even though she has beaten the odds that were given to her upon diagnosis, we still have a long way to go before she is "in the clear". Statistics are still not in her favor, but we know from experience that statistics are just numbers, and Sydney has always been out of the ordinary during her treatment, and will continue to be in her survival!!!! I am sure of that!!!!

Thank you for checking in. I wish everyone a happy new year, and I will update again soon (in mid-February) when Syd goes to NY for her next injection and scans.

Michelle

Saturday, December 5, 2009 2:37 PM CST

Hello,
Things are good. So far, we have the results of Syd's MIBG scan and MRI. They are both stable, with no new signs of Neuroblastoma. We are very happy. We still do not have results of her urine or Bone MArrow, but we do know that if there was a problem, we would have heard by now. We are assuming that they are good as well. Syd had her 5th injection of the NB vaccine, and it went smoothly too. She is doing fantastic, feeling fantastic, and looking forward to a fantastic Christmas with no worries about her health.

We had a very nice and relaxing Thanksgiving. The family came to visit and it was great getting to spend time with them. I had my heel surgery last Monday, and still feel pretty terrible. I have a huge cast up to my knee, and it feels like it weighs a ton. It's hard to lug around on the crutches. I am lucky to have a wonderful husband to take care of me, a terrific son who piggy-backs me up the stairs, and a loving daughter who keeps me company up in bed and watches TV with me. They are great, but Im sure they are getting sick of taking care of me.

Well, thanks for checking in. and I will be updating again soon.

Michelle

Thursday, November 12, 2009 5:46 PM CST

Hello. It has been 2 months since my last update. Gosh, where has the time gone? It has also been ages since I have even been on the computer. I get my email through my phone, and almost never have to get on the computer anymore. I have received many complaints and gotten the guilt treatment for not updating the web site in so long. I will try to remember all that we have been up to since September 8 (my last update).

All of Sydney's September scans were stable. She is still doing very well. Football season went really well. Drew did great playing offensive tight end, and Sydney cheered her heart out. The season went by way too quickly, as we thoroughly enjoyed each and every game watching and cheering on the kids. Basketball season begins next week, so Syd will be busy again 3 nights a week cheering.

Drew celebrated his 14th birthday on Oct 12, and Kevin and I celebrated our 16th wedding anniversary on October 9th.

About a month ago, Drew got the flu. He missed a week of school, took 5 days of Tamiflu, and got better. As a preventative measure, Sydney took 10 days of tamiflu and got the flu shot. She got mildly sick, but it only lasted a couple days. A week later, I got the flu, horribly. The high fevers, chills, body aches, slight pneumonia, and missed a week of work. It was awful!!! Thankfully, we all recovered. I still have the cough at night, but feel sooooo much better.

The kids both made honor roll on their report cards a couple weeks ago. They are both doing fantastic. The weather is cooling down. the leaves turned, and are now falling off the trees. Half of the trees are already bare. This time of year is my favorite. We are looking forward to Thanksgiving. My dad, step-mom, sister, nephew, and Mom will be at the house for dinner this year, and it will be nice to have a full house. We have spent many Thanksgivings in NY over the years, going to the Macy's day parade. I am so happy to be able to just watch it on TV this year.

My heel is still broken, and never healed from the incident over the summer. I will be having surgery on Nov 30th to correct the problem. It will be nice to soon be out of pain when I walk.

Next week, Sydney and I will be flying to NY for her 5th vaccine injection and her work up of scans. We fly to NY early Wednesday the 18th. She will have her MIBG injection, labs, and MRI of head and thorasic spine on that day. On Thursday, she will have the MIBG scan, Bone MArrow biopsies and Aspirates, and get the vaccine. Then, we will fly back home on Thursday night. It's going t be a very quick trip with hopefully no problems.

Even though we no longer have the Sydlets business, I have received a few emails asking if we could make any bracelets for Christmas. I just want everyone to know that we have a TON of inventory bracelets left over, and I would be more than happy to sell them. We have hundreds of beautiful bracelets just sitting in a closet. Everything is at least half off, and we just want to get rid of the left overs. All money will go to Sydney's medical fund to help pay for her medical bills, insurance, and our trips to NY.

I hope I have caught you up on everything. We are all doing well, and are just so extremely happy to be living a mostly normal life. We are enjoying it while it lasts, and pray every day that it keeps lasting longer. Remember that no news is good news, and I promise to update after our trip to NY.

Thanks for checking in!! Until next time.....

Tuesday, September 8, 2009 6:17 AM CDT

Hello,
Sorry for the long lapse in updates, but you all know, no news is good news.

Syd spent her birthday in the hospital in NY receiving the 4th injection of the vaccine. No side effects this time. She also had all of her scans, and so far, the MRI is NED, the MIBG is NED, and the PET scan is stable/unchanged with uptake in the left femur (as always). The bone marrow biopsies are not in yet, nor is the urine.

We had a nice long weekend. Sydney had 2 sleep-overs with friends, and she went to the Talor Swift concert Saturday night. She loved it.

We are all excited because the first Indian Land Middle School football game is this Thursday night where Drew will be playing and Syd will be cheering. It will be so much fun!!!

Thanks for checking in, and I will let you all know things as they happen.

We are not due back in NY until mid November, so she gets a nice long break from everything except the beta-glucan (yuck)!!!!

Until next time......

Friday, August 21, 2009 7:49 AM CDT

Hello again,

Things around here are crazy busy as usual. The kids started school on Monday. So far - so good. They are managing their after school practices for cheerleading and football, along with homework well. We are all so tired at the end of the day, that we usually are all crashed in bed by 9:30 or 10:00.

We had a fun weekend with the Monroes and Oughtons. Last summer we were with them and Mackenzie Monroe broke her arm and dislocated her elbow. This summer, I fractured my heel bone, so we have decided that it is a danger for us all to get together. However, we are trying to plan a ski trip this winter, so who knows what will get broken then.

I can not walk, and have to stay off my heel for 6-8 weeks. It has been a difficult week, that's for sure. But, my arms and sides are finally toughening up from the crutches, and I am starting to move a little bit faster now. Kevin and the kids have been very helpful.

Syd's knee is starting to really bother her again. When she was taking the Thalidomide/celebrex for the past 2 years, the knee pain was pretty much under control, with occasional flare-ups. However, since she has been off the celebrex, the knee pain is back, and not going away. Apparently, she can not take the celebrex while on the vaccine, so we have to find another way to resolve her knee pain. Right now, she is using heat packs, sports cream, and her crutches. She is really trying to preserve her knee during the day, so she can still do cheerleading practice in the evenings.

Kevin and Syd will fly to NY on Wednesday. She will get the vaccine injection on Thursday along with a PET scan. On Friday, she will have her MRI of the thorasic spine, and the MIBG injection. On Saturday, she will have the MIBG scan, and then on MOnday, she will have Bone Marrow biopsies and asp. They will fly home on Monday night (hopefully). Sounds like a great birthday weekend, huh???? We will have to make it up to her. It will not be the first time she is in the hospital on her birthday. I don't know how it works out like that so often.

Well, thanks for checking in, and I will update again next week.
Michelle

Thursday, August 13, 2009 6:28 PM CDT

Hello,

Things around here are just fine. We have been thoroughly busy with summer winding down and trying to get things ready for school. It starts on Monday, and the kids are just not ready yet. Sydney made 3 trips to NYC this summer, and has another trip in 2 weeks. She really has not had much "down time" to just relax and sleep in, and just be a lazy teenager.

She started the Beta Glucan last night, and will continue it until her next vaccine shot on the 27th. She also has scans in NY on the 27th, 28th, 29th, and 31st. I am happy to report that the 3rd vaccine injection did not cause her to have any fevers, no ER trips, and no flu symptoms. We have not had the blood tested for liver function yet, but we will do that next week on Tuesday or Wed. Hopefully, they are not too elevated. I have heard through the grapevine that the elevated liver function must be a "Sydney thing", because so far, she is the only patient in the trial to have that issue.

Tomorrow, our friends the Monroe's and the Oughton's are coming to visit for the weekend. We are very excited to see them all again.

Well, thanks for checking in, and I will not let as much time go between updates next time.

Tuesday, August 4, 2009 6:07 AM CDT

Hello,

Well, all is good!!!

Syd and Drew had an amazing time at camp. They told us many stories about the fun activities they did, the friends they made, and the pranks pulled. I have some really cool pics that I need to post soon of them tubing. They caught some serious air flying on the tube behind the boat. I almost had a heart attack when I saw them.

Kevin and I had a nice week too, but missed the kids like crazy.

Sydney had her labs drawn yesterday and the liver functions came back down to normal. So, bright and early this morning, Kevin and Sydney jumped in the van and are headed for NY to get the 3rd injection of the vaccine tomorrow. Then, they will drive back home tomorrow night. It's a turn and burn type of trip. She feels great. They will also bring back a hoop load of Beta Glucan for her to start drinking next week - which is the most dreaded part of this whole protocol.

Her 4th injection will be on August 27th (her 13th birthday), followed by her first work up of scans.

Thanks for checking in!!!

thursday, July 23, 2009 9:14 AM CDT

UPDATE THURDSAY

ok, We just spent the past 7 hours at the hospital. Sydney's Liver functions were tested again and the results were promising, but not good enough. The good news is that the # is going down. The bad news is that it is still very elevated at 184 (remember it has to be below 94 to resume the Vaccine injections). SO, Where do we go from here???? HOME!!!! We are headed home tomorrow morning. Sydney will enjoy the weekend with her friends and family. Om Monday, she and Drew will be shipped off to camp for a week of blissful teenage fun. On Monday, August 3, when she returns from camp, we will head to our home hospital to repeat the liver function blood test. If her counts are where they should be (and we all are pretty sure they will be) she has to have the next injection within 72 hours of the blood test. So, we will get the results and literally start driving to NY or catch a plane asap to get it done on time. There is no wiggle room for the 72 hours. It is a very strict protocal. Her 1 year vaccine schedule will not change, even though shot #3 is changing. Shot #4 is still scheduled for week 8 (August 27th - her birthday). She also will start the Beta Glucan on Week 6.

So for now, we will all enjoy the next week. The kids will be parentless for a week, and Kevin and I will be teenagerless for a week, and all alone. We will try to forget all about the treatment and just have fun.

Everything will all start back up on August 3. I may not update until then.........

Thanks for checking in and for all of the prayers, Michelle
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Well, today is Wednesday, and I am not a happy camper. I am going to try to explain this to the best of my ability. I mentioned in a previous update that Sydney had elevated liver functions. The normal range of liver function is between 10 and 37. Last week, Sydney's number was 81. They were concerned about that because in order to receive the vaccine injections, your number can't go above 94, and we were getting close to that #. Anyway, that was the reason she could not have any tylenol last week, because of the chance that it could make her # of 81 rise. We obeyed and gave her nothing, however her number went up anyway. She had the liver function blood test done yesterday, and her number is now at 328. Tomorrow, she is supposed to receive the third injection of the vaccine, and now that is not going to happen. We have wasted an entire week here in NY, waiting around for nothing. They are going to retest her blood tomorrow morning to see if the liver function is still on the rise, or if it is possibly going down. The good news is that when the # goes back down below 94, she will be able to resume the study. However, if the # goes above 740, she will be removed permanently from the study. The number I am talking about (for those of you who understand blood, I am talking about the AST and ALT levels). For vaccine purposes, Sydney's levels are considered to be a toxicity of 3, and if she reaches a toxicity level of 4, she is done.

We are flying home. as planned, on Friday, and Sydney and Drew will be leaving for a week to go to camp. They will be a lake Lure in NC, having a blast. I really hope that does not get spoiled for them, as it will be the only "vacation" they will have this summer. Im not sure what the plan will be, but as I get more information tomorrow, I will update.

As for today, Sydney and I will be going to see the movie "the Proposal", and Barnes and Noble, and just hang out on our last free day in the city. I am really bummed about this situation. Please pray that Sydney's liver function comes down sooner, rather than later, and will not cause any damage to her liver.

Thanks for checking in

Sunday, July 19, 2009 5:52 PM CDT

Update Monday,

Hello again, We did not end up in the hospital last night. Sydney's temp never rose over 100.3, so we were safe from having to make the dreaded call to the urgent care. We slept in today, a little, and had a nice day. She wanted Dunkin Donuts for breakfast, so I walked down there and got that for her. Then we decided to go to Central Park and walk around. We took a beach ball and baseball gloves and a ball with us too. After a couple of hours, we decided to walk back to the house. The weather was great today, so we sat outside on the terrace and read for a little while after. Her temp stayed normal all day. We have been very happy about that. Tomorrow, we will head to the hospital around 10 for blood checks and a check up with the doctor. I will update tomorrow.
******************************************************************************

Hello,
I made it safely to NY yesterday. During the day, yesterday, we walked around the city, doing some window shopping and just hanging out. Kevin pushed Sydney around in the wheelchair all day, and as the day progressed, it was evident that SYdney was starting to feel pretty bad. We went to an early dinner and Sydney refused to eat anything. She sat at the table wrapped up in a sweatshirt. We knew that she had a fever, so we went to Duane Reade to get a thermometer. Sure enough, it was 102 degrees. We called the fellow on call in urgent care at the hospital, and she told us to come right in. When we got there, her temp was 103 degrees. She felt tired, weak, and had a head ache. Kevin said she felt pretty bad on Friday too - in fact, she only stayed at the Yankees thing for 20 minutes and they had to leave because she felt so bad. The vaccine is definately worse this go around, and causing her the flu-like symptoms. Anyway, After the fellow spoke to Dr Modak, he suggested that she take some IV antibiotics and Motrin. They also did blood cultures for infection and a CBC. Her white Blood Cells were 7.7 last night, which is unheard of for Sydney. Usually, they are around 1.5. It could be a result of the vaccine, or her body could be trying to fight off an infection. We really don't know because she is the only person to get the vaccine (there is nothing to compare it too). They let us go back to the RMD house with the promise that if the fever didn't go down, or if it came back up, we would go back. She also has elevated liver function, so she is now not allowed to take Tylenol for pain or fever. Hopefully, we can get the liver function numbers to drop before the next injection of the vaccine on Thursday.
Today, Sydney woke up cool as a cucumber. We went to the diner for lunch, then went to the pottery place and made a beautiful mosiac for the wall at home. I have been checking her temp every couple hours today, and unfortunately, it is creeping up. It is 100.3 right now, and the Dr said if it gets to 100.5, we need to call and probably go back in for blood cultures again. Please pray that we do not end up apending several hours in the hospital again tonight.
Kevin left us this morning to return home to Drew. He made it safely.

Well, thanks for checking in, and I will update as things happen!!!!!

ALSO, SYDNEY IS OFFICIALLY N.E.D.!!!!!! NO EVIDENCE OF DISEASE!!!!! After 5 and a half years of treatment, hard work and dedication, never giving up and always staying positive, there is no cancer detected in Sydney's body.

Michelle

Wednesday, July 15, 2009 6:21 PM CDT

Hello, Sydney and Kevin are doing well. The pain in her leg is gone and has been for a couple of days. They have been keeping busy going to the NYC museums, parks, and zoos. It's been like sort of a treatment/vacation trip. She went to the hospital today for a check up and to get her labs for the next injection. Some of the lab results are pending, but out of the ones that are in... . everything looks good. She is ready to get the next dose of the vaccine tomorrow morning, followed by Harry Potter 5 or 6 or whatever is it. Drew and I plan on seeing it on Friday night. On Friday, she gets to go to a Yankee's day camp, where she will get to hang out with some players throwing the ball around during the day - and then see a game at night. I hope her leg isn't too sore to last throughout the day.

I will be flying out to NY on Saturday morning to relieve Kevin, and he will return home to Drew and work on Sunday morning. Drew will stay with my mom on Saturday night.

We have really enjoyed having my sister Kandace and nephew Jacob here with us this week. Its been over a year since we have seen them. Sadly, they return home to FL on Friday morning.

Thanks for checking in and for the prayers. Hopefully, the seond injection of the vaccine will go as smoothly as the first did.

Michelle

Saturday, July 11, 2009 6:07 AM CDT

UPDATE:

Saturday, July 11

Sydney is doing very well. She has a very sore leg, but other than that, she feels great. She and Kevin went with the RMD House to Great Adventures in New Jersey today. They should have a great time there.

Drew and I are excited because my sister Kandace and her son Jacob are flying in today for a visit. We have not seen them in a year, so we should have a great week with them!!!!

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Thursday, July 9

Sydney got the first injection of the NB Vaccine this evening. She sat around at the hospital all day having blood work done, signing consent forms, etc. Then they just had to wait for the components of the shot to be heated and mixed, then cooled back down. At 5:30ish she got it. It was a shot in her thigh, and she compared it to a GCSF shot. It burned and stung going in, but when it was done, it was over. She is a trooper, thats for sure because she was not allowed to use the EMLA cream to numb the area (I'm not sure why). The DR's confirmed that Sydney is the first patient enrolled in the trial. She is our little human guinea pig. She is so brave to be old enough to understand that it has never been given to any other child before, and still want to do it with no worries. She is paving the way for future NB patients, and hopefully this will be the right treatment to keep the beast away forever. Her MIBG final report came back and it was negative. This is the first time ever that she has had a negative MIBG report from MSKCC. We are just thrilled. The only side effects they expect with the vaccine are mild flu-like symptoms. So far, she has no side effects. Please continue the prayers for Sydney and all of the other children who have cancer. We appreciate you checking in on us. I will update again soon and let you all know how she does throughout the week.

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Wednesday, July 8

Hello,

Well, it is official...... SYdney and Kevin are flying to NYC today. Sydney is definately receiving the first injection of the new NB Vaccine tomorrow. She will get the first 3 injections each Thursday starting tomorrow - the 24th. After that, she will get a 3 week break, then start Beta Glucan. She will have to drink a bottle of Beta Glucan every day for 2 weeks on/2 weeks off for a year. That will be the worst part of the trial for Sydney because she describes the Beta Glucan as tasting like a bottle of spit.

She will have to fly back to NY for 4 other vaccine injections throughout the year, with several breaks in between each one of them. She will also have to fly to NY every 12 weeks for a complete work-up of scans and biopsies. We will be flying there a lot over the next year. Please pray for minimal side effects with the vaccine. They are not sure what the side effects will be, but they do not expect anything severe. We were told to be prepared for anything due to Sydney's past history of crazy side effects. I am nervous about that part because you just never know.....

I will hang out at home with Drew until the 18th and then Fly to NY to relieve Kevin. He will come home, and I will finish out the last week with Syd. It is harder now to travel since I am working too. It kills me not to be able to be there with her for the start of the treatment, but I am confident she is in good hands.

I will update again soon to fill you all in on how it goes,
Michelle

Tuesday, June 30, 2009 6:35 AM CDT

Hello,
Kevin and Syd made it back safely on Saturday. So far, the results of her scans are good. We do not have an official report on the MIBG yet, but Dr K said that he did not see ANYTHING on it that would indicate NB. We are so thrilled that the spot n her leg seems to be gone. The PET scan did show uptake in the leg, but it was minimal and less than in previous scans. We are waiting on Bone marrow results and urine results still.
Sydney is expected to report back in NY on July 8 (next WED) to be one of the first patients to receive the NB Vaccine on the 9th. We are excited and nervous at the same time. She will be in NY for about 17-18 days to get the first 3 injections of it, then she will get a break for a few weeks. We have been waiting for this vaccine to be available for literally 3 and a half years. Every time it is about to "hit the shelf" something pulls it back and delays it. We are pretty sure that this time is the real deal.

Thank you for all of your prayers and I will update when we get the final word on everything.

Michelle

Friday, June 26, 2009 6:08 AM CDT

So far, things are going well in NY. Kevin and Sydney arrived Tuesday evening. They went to Times Square and "played". They shopped around and saw the movie Land of the Lost. On Wednesday, Sydney had her PET scan followed by MRI of the thorasic spine. Yesterday, Sydney went to the hospital to have her pentamadine treatment, see one of the NP's, and get her MIBG injection. Unfortunately, they did not get results from the previous day of the MRI and PET. They went to Central Park last night and played ball, then had a BBQ at the RMD House after.

Today is the big day. This morning, she has her MIBG scan and at 1:00, she has her 4 bone marrow biopsies. Hopefully, after the procedure, they are supposed to meet with Dr Modak to discuss a new treatment and get some of the results from earlier in the week. It will take at least a week to get back her BM results and her Urine results. Also, they did an immune function blood test that will take 2 weeks to get back before they make a final decision on a new treatment for her.

Thanks for checking in and I will update when we get some results. I am missing them terribly and can't wait for them to come home tomorrow!!!!

Michelle

Thursday, June 18, 2009 9:08 PM CDT

Hello Wow, I did not realize that it has been almost a month since my last update. We have been super busy with moving my Mom and now moving ourselves. We have moved about half of our stuff into the new house, and plan to move the rest this coming weekend,

Syd is still doing great!! She had cheer camp last week, and is flying to New York next week. On Tuesday June 23 Syd and Kevin will be going to NY for scans. We had planned on doing all of our scans in Charlotte, since she is doing so well. However, something came up that requires us to be in NY this time. It will be nice to see if her MIBG scan is the same as the Charlotte scan (in March), or if it will be the same as it has been the past 5 years in NY. I will post as soon as we know any results, but probably won't know anything until the end of the week. I hate not being able to go with her, this time, but her daddy can take great care of her too. I will miss them lots. There is a good chance that Sydney's treatment could change after this round of scans and I will fill you all in on the details as soon as I have them all.

Thanks for checking in on us!!!!!

HAPPY FATHER'S DAY to my Dad, and my Husband

Michelle

Friday, May 22, 2009 7:57 PM CDT

Hello,

Things are very well here in the Sims household. Sydney is doing great, still. She has been busy with Cheerleading try-outs for next year. She found out that she made it again. Last year, she tried out in January and was only able to cheer for the basket ball team, but now, she will be cheering for the football team next school year, and the basketball team. She is really happy and excited. Drew has been at spring training for the football team, also. I think football season will be pretty exciting next year at Indian Land Middle School- for us anyway.

Sydney is feeling good. She is finishing and restarting another round of thalidomide/celebrex. It's like her 17th round of it (or something like that). She will be having her 3 month scans again in a few weeks. The time is just flying by. By the way, the NB team in NY were "VERY PLEASED" with the way her March scans looked - especially the MIBG scan. Dr Kushner felt optimistic that the scan appeared accurate, and that the spot in her femur could be gone. The doctors will not use the term NED. I really wanted them to say it, but it just isn't happening. I think everyone is a little bit skeptical because of Sydney's 5 and a half year history of never being NED. I am hoping that the June scans will be the same as March, and then maybe we can use the term NED.

The kids will be out of school for the summer on June 4th. They are sooooo ready. Academically it has been a tough year for them both, especially with Syd being in all honors classes, and Drew in the gifted classes. They have really worked hard this year. We will start moving on June 15th into the new house. We are all excited about that. The new neighborhood has an amazing pool and lots of fun things to do there.

Well, thanks for checking in. We are so thankful for all of the prayers for Syd and all of the blessings God has given us. Please continue to pray for all of the other children, fighting NB and other cancers, who are not doing so well. There are so many children suffering.

Tuesday, April 28, 2009 6:07 PM CDT

Hello,

Syd is doing really well. She has been feeling great lately. There is really nothing to report, which is wonderful.

Sydney fell down a rocky hill last weekend and cut the crap out of both of her legs from the knees down. I mean, her legs were shredded!!!! It was pretty bad, but she is healing nicely. I think she will have some nasty scars from it, though.

Her bone marrow results are negative as well, which continues to be awesome. As of right now, there is No Evidence of Neuroblastoma in her body (according to the Drs in Charlotte). All of her scans were sent to Sloan for Dr Kushner and their radiology department to review. I hope they concur with the NED report. It would really be nice to FINALLY be NED after 5 years of battling cancer. What an accomplishment!!!!! Miracles do happen!! and I believe and hope and pray so hard every night for her body to be completely healed on this Earth. We are enjoying this high for as long as we can!!!!!

Her next scans are in June. Please continue to pray for the NED results to be REAL and for it to last forever!!!

School is out on June 5th, and we will be moving into our new house between the 15th and 30th. We have lots to do to get ready for everything.

Until next time.......

Friday, April 17, 2009 8:02 AM CDT

FINALLY!!!!!!

I am so sorry for not updating. Caringbridge has totally changed everything for the authors of classic "OLD" caringbridge sites, and it has taken me a few weeks to figure out how to sign in. It is much more difficult and confusing now than it ever was before.

Anyway, Sydney is doing well. She has been feeling good and having no issues lately. Her headaches are minimal, UTI's are gone, and she has a new earlier bedtime which is helping out with the sleepiness.

We just got back from Spring Break in Gatlinburg. We had a great time up in the mountains in a log cabin. We hiked, went to see Dixie Stampede, toured the forbidden caverns, shopped, Cades Cove, and lots of other stuff. We saw lots of Deer, wild turkeys, 5 black bears, owls, rabbits, etc. It was fun.

We are now back at home, back to reality. The kids will be finishing up their last 9 weeks of school. Kevin and I are back to work. We will start packing up the house, as we are moving in June to another house. And, the lovely Air Force is trying to deploy him again, so we are trying to deal with that. It's always something!!!!

On another note, I am announcing that we are closing Sydlets. We are going out of business, sadly. It was a tough decision to make, but we lost a lot of money last year trying to keep it going, and we can not afford it this year. I have a lot of inventory that I will be trying to get rid of, "prices slashed" and then it will just be a thing of the past. Sydney and I will still make jewelry "for fun", and would be happy to still serve our loyal customers - just in a different way. Feel free to contact me on my personal email if you have questions about it kasmic1@yahoo.com. If you are interested in any of our leftover inventory, we have all of the marathon jewelry available. I will be taking off the marathon charms, and keeping the bracelets "as is", and selling them for $15.00. Email me if you are interested.

Thanks for checking in on us, and now that I have the caringbridge website figured out again, I promise the updates will be more regular.

Thursday, March 19, 2009 7:13 PM CDT

Hello,

Well, all scans are finished and results are in except for Sydney's bone marrows. She will have them done next Friday.

Her new Urine tests came back within normal range. So, that proves that the test was messed up before from all of the cranberry juice she was drinking due to the UTI.

Another urine test was done that showed that she still has a bladder infection - but she is being treated for it, so hopefully, it will resolve soon.

MIBG scan was done yesterday. Results today are negative. The Dr called me today and told me that no new NB showed up, and (sit down, you will not believe this) - the left femur didn't show up either. We are completely baffled by this. Every 3 months for 5 years, the left leg has been positive for NB cells. All of a sudden, it didn't show up??????? WHAT?????? The MRI of her left femur showed stable, so we are pretty unsure of what this means. The scan was done on a different machine, at a different hospital, in a different state, and read by a different radiologist. Either way, we are just so happy that there is no progression of anything. We have been worried because of all of her bladder issues and headaches, and sleepiness, etc. I guess all of her symptoms are just side effects of treatment.

She stayed home from school today due to a severe headache she has had since yesterday. Nothing would relieve her pain, so today we had to resort to her taking Dilaudid. I hate giving her narcotics, but at least it gave her some relief. Her pain had gone down from a 7 out of 10, to a 5, to now a 3. I will keep giving it to her as long as it's helping. Hopefully, tomorrow will be a better day.

Thanks for checking in on us and for all of the prayers. We really needed them, and still do.

Please say an extra prayer for Jake Miller. He and his family need prayers for healing. He has been battling NB for 7 years, and the disease seems to be progressing - even on treatment.

I'll update again soon, Michelle

Sunday, March 15, 2009 10:22 AM CDT

Hello,

Another busy week has passed. Sydney went in to see her oncologist on Tuesday. She had a pentamadine treatment, a cbc, and a repeat urine test for tumor markers (HVA and VMA). Her pain in her bladder persisted, so we were able to gat an emergency appointment with the Urologist on Wednesday. The doctor did a couple of ultrasounds, before and after she peed, and what they discovered is that she is unable to empty her bladder each time she goes to the bathroom, causing the urine to just sit in the bladder. The sitting urine is causing the pain and infections. So, she started another round of antibiotics to treat the current infection, but Im not sure how we are going to correct the problem - if it can even be corrected. The doctors think that her bladder has been damaged from radiation therapy she has a few years ago to her spine. The bladder was in the field of radiation. That is not a final diagnosis, just a guess. She will have a follow-up appointment with the urologist in a month to re-evaluate.

That is the problem with radiation therapy. The side effects come years later, and you never know what they will be. She had her abdomen radiated, her skull, her left leg, and her lower spine. One of the biggest side effects is a secondary cancer - we pray that does not happen, but we are already seeing the nasty side effects to her bladder and her left leg. Cancer is so awful, even if you beat it, your body is never the same and will always be reminded of the beast.

This week is the dreaded MIBG scan. The scan which causes the most anxiety for us because it is specific to NB, and is the best indicator of progression or relapse. She will have the radioactive nuclear medicine injection on Tuesday morning, then the scan will follow on Wednesday morning. I will update when we know the results. We should also have the repeated urine results by then.

Hopefully, my nest update will be full of good news!!

Thanks for checking in, and please continue to pray for Sydney's complete healing.

Friday, March 6, 2009 6:45 PM CST

Hello,
Syd is back home, and I am so happy. I picked her up from the airport at 3:30 yesterday afternoon. She had an amazing time, and learned a lot. She also made some new friends, and plans on keeping in touch with them.

After she got home, we had to go to the Middle School Sports banquet. They gave out certificates to everyone, and a few "special" awards. We were happily surprised when they called out Sydney's name because she won the Most Spirited Cheerleader Award. It really made her day!!!

Then, we went back to the airport last night to pick up Aunt Rhonda and cousin Kelsi. They are visiting from FL for the weekend. We plan on having a ball with them.

SCAN RESULTS:

MRI Brain - Normal
MRI Knee - Stable
MRI L. Femur - Stable
CT Scan chest, abdomin, pelvis - Normal

URINE - VMA - Normal
URINE - HVA - results doubled from last time

We plan to repeat the Urine tests because the test results can be messed up by eating things like Vitamin C, vanilla, and nuts. Sydney had a UTI and we were filling her with Cranberry Juice, so I am thinking that could be the reason why the results were doubled (At least I am praying that is why).

She is currently having the UTI issues again. It started on her trip to DC, but we are going to stop the cranberry juice and switch to only water 2 days before the next urine test.

She has her MIBG scan on March 17th and bone marrows the following Friday. We are praying that her results are stable/improved, as always.

She re-started her thalidomide/celebrex yesterday. I'm sure the crazy sleepiness will return soon.

Thanks for checking in,
Michelle

Saturday, February 28, 2009 12:30 AM CST

Hello,

I am soooooo sorry for the lapse in updates. I did not mean to worry anyone. The truth is that I am so exhausted and tired every night that I just don't have the energy to get on the computer. I started a job two weeks ago, full time, and it has been an adjustment for the whole family.

Sydney is doing great. She is feeling a lot better, but is still tired a lot. The good news is that her pain is gone, and has not returned. She finished 2 different antibiotics, and they seemed to do the trick - although we never did find out what was causing the pain in her belly area. Yesterday, she had 3 MRI's and a CT scan at our local hospital, in Charlotte. Last week, she had her VMA/HVA urine tests done. I am hoping to get some results on those soon. We have decided not to go to Sloan Kettering in NY for scans this time. We love our doctors at MSKCC, but for now, they have no treatment available for Sydney. So, we decided to save the money and do scans at home. We will send all of the results to MSKCC, and we will stay in close contact until something new comes up for Sydney. Right now, we are just enjoying the blessing of her cancer being stable.

As for her thalidomide, she is on a 2 week break from it. We were thinking that she has just been on the drug for too long, and that is what was making her so tired all the time. She has been off it for 10 days, and it has helped a bit. I don't know if that was causing the entire problem of the sleepiness or not, but she will be restarting the thalidomide in 5 days, along with the Celebrex.

This morning, Kevin and I put Sydney on a plane, by herself, to go the the JR Congressional Leadership Conference, in Washington DC. She did make it there safely, and has found her chaperone at the DC airport. Im so proud of her for being so brave. I bawled like a big baby for an hour at the airport after she boarded the plane. I already miss her terribly. She will fly back home on Thursday night. I'm counting down the days, but I know she will have a blast. Please pray for her health and safety while she is gone.

When she returns, she will have her MIBG scan and her Bone Marrows the following week. We pray that her cancer remains stable or improved. Whenever I get some results, I will update. I will try to update more frequently, and get myself a little better organized.

Thanks for checking in!
Michelle

Tuesday, February 10, 2009 6:30 PM CST

Sydney had her appointment with her Dr today. They did another urine culture and they are also doing VMA/HVA tests on the urine. That will let us know if the tumor markers are up or if they are normal. They have been very normal for the past 3 years, even when she has had a relapse, so I'm not sure they will be a great indicator of anything. The Dr examined her thoroughly, and was concerned when he pressed on her belly that it caused her pain. The cramping that she had been having is gone, but is now tender to the touch. She will be having an MRI of her chest, abdomin, and pelvis sometime in the next week or two. She is also so tired all the time. She had a comprehensive panel of labs drawn today, and a cbc. Her ANC is back down to 0.8 - which is very low, but unfortunately, pretty normal for Sydney. We have no clue what is going on with her, but in general, she is feeling better than she did last week. Hopefully, we will get some answers. We are praying that it is not NB causing these problems, and just some normal, childhood thing.

Thanks for checking in on us again,

I will update again soon

Tuesday, February 3, 2009 8:22 AM CST

Friday Frb 6
Syd went back to the hospital today for the ultrasound. Unfortunately, it was no help in figuring out what is causing the pain in her lower abdomin. It looked normal, so we are left to wonder. She still has her appt on Tuesday, and if the pain persists, she will have a CT scan done.

Also, please pray for the family of Jessica Rose. She earned her Angel Wings this morning at 7:37am. She had a stroke and brain bleed early Thursday morning and she was unable to recover from it. It is a huge tragedy, and she will be missed by everyone. Heaven got another beautiful warrior princess this morning. We are all so sad!!!

Thanks for checking in again
******************************************************************************

Thursday Feb 5, 2009

Well, Sydney attempted to go to school today, but I got the phone call at 12:30 to pick her up. Apparently, she has more than just a UTI. In fact, she may not have a UTI at all. Her Urine culture was negative, so we are unsure as to why she is having all of the pain and cramps her lower abdomin. We will be going back to the hospital on Tuesday for an ultrasound of her belly. They will also do another urine collection to check her tumor markers. Hopefully, this is not NB related. We will be scheduling her next round of scans, and she will have a pentamadine treatment. On the plus side, her sinus infection is getting better. She is up in bed sleeping now.

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Wednesday Feb 4
Today the kids got another snow day from school. Sydney was ready to return back to school today, and she ended up getting an extra free day off. We only got about an inch of snow, so they are not able to play in it as much as last time. They are going around to all of the neighbor's houses with 2 brooms and a large cooler. They are sweeping all of the snow off the decks, putting it in the cooler, and bringing it back to the hill in our back yard. They are working so hard for this snow so that they can sled down it and play. It's so cute.

Sydney is feeling a lot better today. 2 days of antibiotics do the trick and make a difference. She is still having bladder cramps, but hopefully, they will all be gone soon too.

Thanks for checking in again.....

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Tuesday Feb 3
Hello,

Sydney has been home sick for the past two days. We spent most of the day at the hospital yesterday, as Syd has a UTI, as well as a sinus infection. They did cultures and blood work yesterday, but so far, we have no results. Her CBC results are pretty normal for her, except her white blood cell count is a little elevated - indicating that she is fighting an infection. She was started on antibiotics, and I am hoping that she will begin to feel better by tonight.

Update on our friends....

Jessie is making baby steps toward her recovery. She is still on the heart and lung machine, vent, and her kidneys are now causing problems. Her heart is showing improvement. She still needs lots of prayers.

Nick began his new treatment, and is having a difficult time.

Jake Miller (we have known the Millers since the beginning - Jake has had NB two years longer than Syd) - He has relapsed again. He is also starting treatment and needs your prayers.

It is so hard to breathe easily. Even though Sydney has been doing well, we constantly have the reminders of what could happen - what has happened to her in the past, and could very easily happen again. We know how very blessed we are to have been given these amazing, wonderful, good times with Sydney. Please pray that this is the year that the cure is found, for our friends, for Sydney, and for the children diagnosed in the future.

Thanks for checking in,
Michelle

Thursday, January 29, 2009 7:16 AM CST

Hello,

Things are going well right now. We just returned from a weekend with friends, and had a great time.

Very sad news for some of our friends. Please pray for them.....

Nick Franca has relapsed for the second time. He is getting ready to return to NY for more aggressive therapy.

Also, Jessica Rose is in critical condition at ACH in FL. She was infused with a contaminated bag of platelets on Tuesday, and it has been a pretty scary situation.

Thanks for checking in,
Michelle

Wednesday, January 21, 2009 10:04 AM CST

AMENDMENT TO LATEST UPDATE:

God is Good, and prayers DO WORK!!!! Kevin was able to explain our situation with Sydney, and has been excused from the deployment. He was able to transfer units, and actually is now stationed at a base in North Carolina where he will be closer to home when he is doing his Reserve Duties. YEAH!!!!! What wonderful news.

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Hello,

Wow!!! Yesterday was quite a day! The best way for me to describe it was an Emotional Rollercoaster!!

Yesterday was a snow day. We woke up to a beautiful blanket of white covering everything in site. There was no school, and the kids were thrilled. They played outside all day. We are not used to snow, so we had no snow toys. It was so funny to see the kids bringing out the beach toys to play in the snow. It worked. Drew was skim boarding all over the yard and down our back yard hill. Sydney was sliding down the hills on the boogie board, and pool rafts. The kids made a snowman with their beach buckets and shovels. It was great, and we were all smiles. I will post pics.

Yesterday, we got a new president. What a cool day. I actually watched it on TV, which I have never done before. I am very optimistic about this great change that is coming. I hope things get better for our country sooner, rather than later.

Yesterday, Kevin got the phone call letting him know that he is being deployed to Afghanistan for 411 days. Yes, you read that correctly – four hundred and eleven days in the mountains of Afghanistan. For obvious reasons, that scenario just isn’t going to work. As you know, in the world of Neuroblastoma, ANYTHING can happen in the time span of 411 days.

Yesterday, I spent a huge amount of time praying. I prayed for peace, healing and clarity. I have no idea what God’s plan is for our family, but sometimes it feels like he is throwing “curve balls” at us. I prayed for patience and strength to get through all of the “speed bumps” in my life.

Today is a new day. The snow is melting, the kids are back in school, and I am hoping it will end better than yesterday did. Thanks for checking in on us.

Michelle

Thursday, January 15, 2009 5:52 PM CST

Hello,

Sydney got her Knee Brace last Thursday, and it has really helped her knee a lot. It is keeping it warm and supported. She has not complained much since wearing it. Her sinusitis is coming back as she has the sniffles and runny nose. She is doing lots of nasal inhalers and sprays, as well as sinus flushes. The doctor we saw yesterday did not want to put her on antibiotics again since she just finished a 2 week round. If it does not start getting better, we will go back in next week and try a stronger dose of antibiotics. Sydney also had her pentamadine infusion yesterday and that went well.

We are excited about Kevin's return home tomorrow. He has been working in Orlando all week. He ran the Disney Marathon last Sunday, then worked all week, and he will be back home tomorrow night. We really missed him.

The kids have been very busy in school with mid-term exams this week. The first semester is over, and next week they will start some new classes. They both did amazing on their exams, so far - all A's. There are a few more grades that we don't know yet, but I feel pretty confident that they are good too. Both kids made the honor roll again. They really do work hard.

That's about all for now. Thanks for checking in,
Michelle

Thursday, January 8, 2009 9:02 AM CST

Hi,

Sydney's Dr appts yesterday went well. Her knee has been hurting more lately for some reason. I probably jinxed her on my last update saying that it has been doing well. Anyway, once again, the Dr wants to postpone surgery because the problem with her knee is not causing her pain (allegedly). All of her doctors believe that the pain is from the neuroblastoma in her femur being deferred to her knee. They said that lots of people who have hip problems have deferred pain in the knee and no pain in the hip. It is so strange, and complicated, and basically, there is nothing we can do for her. Heat packs seem to help her, so she is now supposed to wear a knee sleeve/brace to help support the knee and keep it warm. Hopefully it will help her. We are also considering pain meds for pain management. We really do not want to have to go down that road unless absolutely necessary. Anyway, that's about all for now.

Thanks for checking in,
Michelle

Friday, January 2, 2009 6:50 PM CST

Hello, and happy new year to all. It has been a fun and busy couple of weeks since my last update. We had a wonderful Christmas. We went to a beautiful church service on Christmas Eve, followed by a nice dinner with family. Kevin’s parents and his brother were here visiting, and my mom and sister were there too. On Christmas morning, we woke up early and opened presents. The kids were thrilled with all of their gifts. Then, Kevin’s mom cooked a big pancakes, bacon, and eggs breakfast for us all. While I cooked Christmas dinner, the kids played “Rock Band” and had a blast. After dinner, we cleaned up and started packing because we decided, on the fly, to take a trip up to Gatlinburg, Tennessee. We spent the next 2 days up in the mountains, soaking up the fresh air, hiking, shopping, etc. It was a nice mini getaway. On New Year’s Eve, we did not do much. Kevin and Drew started a new Sims family tradition, which was a polar swim. It was 35 degrees outside, and those crazy guys dove into the pool and swam a lap. They were freezing, but did it anyway. I guess it’s manly bonding. Us girls just watched and handed them heated towels when it was all done. I took a few pictures too. We stayed up to watch the ball drop at midnight, but fell right asleep after. Not too much excitement. The past couple days have been lazy days. We have been out shopping a couple times for the kids to spend their gift cards. They are getting some pretty good deals out there. On Tuesday, I got news from New York that Sydney’s bone marrow biopsies and asperites are NED and her urine tumor markers are completely within normal range. Yeah, we really have lots to celebrate!!! So, for a year and a half (since her last relapse), she has been stable with only the spot in her left femur. She is doing fantastic!!!! She has an appointment on Wednesday with her knee doctor. She is still having discomfort in the knee on and off, but more off than on. I’m curious to see what her x-rays will show.

It is hard to believe that 5 years ago, we were introduced to the word Neuroblastoma. Sydney was diagnosed exactly 5 years ago on January 15, 2004. The statistics the doctors gave us were that only 20 percent of kids diagnosed with stage 4 NB would survive the disease for 5 years, and 80 percent would not make it. In Sydney’s case, they told us that it looked like 6 months because she was so eaten up with the disease. Never in my wildest dreams did I think we would still be fighting this battle 5 years later. I am so proud of my baby girl, who is now 12 years old, for being such a fighter. I always knew in my gut that she would be one of the 20 percent, even though the odds were stacked against her. Her battle is far from over, but I am so thankful for the time the Lord has given us with her. Time is a precious and wonderful thing. The cure is coming, and we are fighting against the clock. I pray for more time. Time for the research to be done, time for the money to be raised, time to spend with my daughter.

I believe in miracles, and I have so much hope for this year. Sydney had a wonderful year in 2008 – the best year since her diagnoses. I pray that 2009 is even better. I ask that you all continue to pray for Sydney’s complete healing on this Earth, as well as a cure for the beast to be discovered. Thank you for checking in and praying for our family so faithfully through the years.

With Hope, Michelle

Monday, December 22, 2008 5:55 PM CST

Hello again,

School is out,
The presents are wrapped,
The cookies are baked,
The house is clean,
The stockings are hung,
The grandparents will be here tomorrow,

We are ready!!!!

The kids are ready for Christmas, and so are the rest of us. We are really enjoying the time off school and getting to sleep in and spend more time together.

We want to wish all of our friends and family a wonderful Christmas holiday. I'm sure I won't be updating until after it all settles down, so please take some time to just sit back and enjoy your precious children. This is the most magical time of year, so soak it all in and enjoy it. Also, please remember all of the families who have one less to enjoy it with, and light a special candle for all of the angels. It can also be an especially heartbreaking time of year for so many who have lost loved-ones.

Thanks for checking in, and I'll be back online soon,
Michelle

Monday, December 15, 2008 7:38 PM CST

Hello,

Just a quick update.....

We made it home safely. It is so much warmer here at home. Today was 70 degrees. Makes it not feel like Christmas. Sydney is still feeling pretty bad today, and stayed home from school. She has perked up tonight, and I think she is on the mend!! Tonight, we made a gingerbread village. Each one of us made our own gingerbread house out of graham crackers, frosting and candy. They all turned out so cute and unique. They are displayed on our kitchen bar. After that, Sydney decorated snowflakes with glitter glue. She will hang them tomorrow night.

We got news this evening that Sydney's MIBG scan is stable - unchanged. That means that she still has stable cancer in her left femur bone (upper leg), but she appears to be clear in the rest of her body. YEAH!!!! We are really happy about that. The only results we are still waiting for are the Bone Marrows and urine. They are both still pending. We have so many blessings to be thankful for, and we know that. This Christmas will be glorious!!!

Thanks for checking in again, and thank you for all of the prayers for SYdney's scan results!!! They worked. She will continue taking Thalidomide and Celebrex for now, but we are keeping our eyes and ears open to new treatments.

Until next time, Michelle

Friday, December 12, 2008 2:15 PM CST

It is Friday, and all tests have been completed!!!! We are happy to be packing up the room, and getting on a plane tomorrow to head home!!! We have results on 3 out of the 6 tests.

PET scan - stable disease in Left Femur - no new disease
MRI thorasic spine - stable, no disease
MRI brain - Shows acute sinusitus, but no disease

Those are the only reports we have. We are still waiting on the MIBG scan, Bone Marrows, and Urine. These are the 3 most important test results, so we are not completely breathing a sigh of relief.

Sydney is starting a 2 week cycle of Augmentin for the sinusitus, and she is sleeping off the anestesia from earlier today. She is in a lot of pain in her hips from the biopsies, but hopefully, by tomorrow she will be feeling a little better before we travel.

I'll update when I get more results,
MIchelle

Thursday, December 11, 2008 7:18 PM CST

Brrrrr......rrrrrrr......rrrrrrrrr!!!!!! OMG, it is soooo cold here in NYC. The temp is 39 degrees and pouring down rain. We had to make the six block walk in this weather twice today, and we froze our butts off, not to mention got completely soaked. I really would have prferred that the temp drop the 7 degrees and it just snow. At least our clothes would not have been soaked. I had an umbrella, and somehow, my hair was wet. We are thawing out now and much more comfortable in our jammies.

We slept in today until about 9:30. It was nice. We tok our time getting ready, and then walked to a diner a few blocks away. Then we came back to the RMD house and worked on homework. Around 1:00, we headed up to the hospital to see our favorite Nurse Practicioner on the planet, Linda. We tok care of a few things with her, then headed to Nuclear medicine for her MIBG injection. When that was finished, we went to visit our friend who lives here in NY, Barbara. She was sweet, and gave Sydney lots of goodies, and we took silly pictures. Sydney had an appointment with the craft lady at the house to make snow globes at 3:30, so we headed back to the house. She made 3 very cute snow globes before we had to make the trek back to the hospital for SYdney's final MRI of the week. When we got back to the house, we grabbed some dinner, visited with our bud Rich, and that brings us back to now.

Tomorrow, Sydney has her most important scan - the MIBG. It is the mose sensitive to Neuroblastoma, and is the best indicator of progression. It is the scan most feared by us NB parents. After the scan, she will have labs drawn, and get cleared to go under anesthesia for her bone marrow biopsies. Hopefully after that, we will consult with one of the doctors and get some results.

Sydney is already telling me that she is worried about me pushing her in the wheelchair thrugh the snow tomorrow. She is afraid I am going to slip and dump her out of the chair because, the truth is, it may have happened once or twice in the past. It is so hard to push a wheelchair or stroller through snow when you are barely capable of even walking through it on your own (remember we are fron FL). I told SYdney that I would walk extra slow and careful. She warned me that her life was in my hands (so dramatic)!!!

I will update again tomorrow when I find out anything.
Thanks for checking in again,
Michelle

Wednesday, December 10, 2008 6:38 PM CST

Hello,

Today went pretty much exactly the way I said it would yesterday. Surprisingly, everything was on time, and we had no issues. Sydney hated wearing a mask all day, but it was necessary because she has a yucky cold (green snot and sore throat). She said the mask made it harder for her to breathe. We were unable to give her any cold medicine because it would interfere with the urine collection results. We do not want to mess with those because they are big indicators of disease progression. Anyway, the urine collection is over, and she is now taking Sudafed PM. Hopefully, she will sleep better tonight. It was a rainy, gloomy day all day today - but not too cold. Tomorrow, should be very cold, and we might even get to see some snow on Friday.

Last night, Sydney did crafts all night. She made two adorable Christmas ornaments, and spent 2 hours making gingerbread houses. Our first house was just about finished when it collapsed. We were very mad, as we put lots of hard work into it. We decided to re-build another house with a stronger foundation, and it worked perfectly. We have it displayed in our room. It smells really good. Tonight she made snowmen and is planning to make glittery snowflakes. They are giving all sorts of "stuff" to the kids here at the house. Im so glad we brought a huge suitcase. Last night, she got a high school musical game. Today, she got 2 collectable Barbies and a Teddy Bear. She is having a good time. We did manage to get some math homework done today also. She actually finished all of the math today, but still has a TON of language arts to do and social studies.

Tomorrow, we get to sleep in.....which will be good for Syd since she is not feeling so great. We have to be at the hospital by 2:00 for her MIBG injection, (the MIBG scan is Friday). After that, she has another MRI - of the thorasic spine - at 6:00. There is another dinner/party tomorrow night. They are really feeding us well on this trip.

Thanks for checkin in on us again, and for the prayers and words of encouragement!!!! So far no results, but I didn't expect to have any. Sometimes, when there is bad news, they will give us a call right away - so no news is good news to me!!!

Tuesday, December 9, 2008 3:26 PM CST

We made it here to NY. After a loooonnggggg travel morning that began at 5:15am and ended at 12:15pm, we are safe and sound here at the Ronald McDonald House in NYC.

We are just hanging around the house tonight because we are exhausted, and sleep deprived - especially after staying up late last night to see the Bucs get beat by the Panthers. There were lots of Bucs fans hanging their heads low at the airport this morning (un included). We may live in Charlotte, but our hearts remain in Tampa with the Bucs!!!

There is gingerbread house decorating tonight for the kids, then a dinner brought in by one of the local churches. I plan on getting to sleep early tonight, as we will begin our day early in the morning.

We plan to be at the hospital around 7:30am. Sydney will get her port accessed, have lots of labs drawn, and get her glucose tested for the upcoming PET scan. Then we will see the doctor, or nurse for a quick visit and get her sski drops for the MIBG scan, and her urine collection stuff. We are due in Nuclear Medicine at 9:00am to get the injection for the PET scan. Then we wait an hour for all of the radio-active sugar to circulate through her body. At 10:00, she will actually have the scan. After that, we will get something to eat, because SYd is not allowed to eat after midnight tonight. Then we will return to the hospital for an hour long IV pentamadine treatment. We will get a long break after that, and report back to the hospital at 5:00pm for her Brain MRI.

I will update again after the MRI tomorrow night. We should not expect to get any kind of results until Friday.
Please pray for good ones!!!

Thanks for checking in, Michelle

Monday, December 8, 2008 3:41 PM CST

Hello,

I added a new home picture and a new slideshow of pics. I thought you might like to see what Miss Syd has been up to these past couple months.

We are leaving for New York early tomorrow morning. We have a 6:40 am flight with a layover in Atlanta, then to NY. It's going to be a long day!!

I will update when we get there, and keep you all updated each day as she gets her scans and biopsies.

Thanks for checking in, and please pray for good results!!

Michelle

Sunday, November 30, 2008 7:29 AM CST

Hello,

It has been a while since my last post. The truth is that things have just been "normal" around here. We have been up to the regular day-to-day things that everyone else has. Sydney has not even been to the doctor in the last 2 weeks. Her blood counts have been stable, she is taking oral meds at night, and she is feeling great. School is good, cheerleading is so fun, and she serenades us every night practicing for her chorus concerts. She had one last week, and another this coming Tuesday. It is sort of scary to me how normal our lives are becoming. The "C" word is not mentioned very often anymore, and we are sort of pretending that it does not exist. However, my mind does not let me forget about it for long, nor does the reality of life. We will be flying to NY on Dec 9 for scans again. The anxiety is starting to build within me, as I kind of have this feeling of, "It's all too good to be true". We are enjoying each day to the fullest!!

We had a wonderful Thanksgiving. WE WERE HOME!!!! I cooked a huge dinner, that we are still eating, and probably will for the next few days. Kevin says that the leftovers get better each day. Over the past 4 Thanksgivings in the cancer world, we have spent 3 of them in NY. It just worked out that way. I always made a huge green bean casserole for the 150 people in the house, we would fight the crowds to see the Macy's parade, then we would always go to the movies that night with several other families. It was always fun, but this year, it was just so nice to be in our own home. We ate, watched football, and played the Wii.

The rest of this weekend has been busy getting ready for Christmas. We have been decorating the house (inside and out). We even did a little shopping. I just love this time of year, and we are sooooo enjoying the seasons. The fall leaves were so beautiful. Now, there are no leaves left, and the weather is cold. We use the fireplace every night, and it is so cozy. It is a welcomed change from the Florida weather.

This week will be busy too. Syd has a concert on Tuesday night, then Thursday night is the first BB game where she will be cheering. Also, I have 2 job interviews this week. We will be going out this afternoon to get our real Christmas tree. I can smell it already!!!!

Thanks for checking in on us, and I will try to keep the updates more frequent and regular!!!

Michelle

Wednesday, November 12, 2008 8:59 AM CST

Hello,

We got SYdney's HAMA results last night, and unfortunately, she is HAMA positive. We were pretty-much expecting it, but were hoping that she would be negative. Last year, when she was HAMA positive, her HAMA # was around 5000 and it took 6 months for it to go down. Right now, her HAMA # is around 19,000, so we are not expecting it to go down for around a year. This is not a good place to be in because she can not do any (mouse)antibody therapy until the hama goes away.
So, what now???? Well, due to her blood counts still being very low, she is also not able to do any therapy such as chemotherapy, or anything having to do with radiation because it would lower her bloods counts further, and compromise her immune system more than it already is.
Luckily for us, Sydney's cancer is stable, and not progressive, so we can get away (right now) with a maitenance, low dose therapy.
She will be starting back on good ol' Thalidomide and Celebrex later this week. It is possible that she could be on this therapy for a year, or until something new is invented for Neuroblastoma.
I am ok with this treatment. It increases her appetite, and she needs to put on a few lbs. Over the past 2 months, SYd has lost 7 lbs, and she needs to put it back on. The thalidomide causes extreme sleepiness, so we will have an issue with that, especially since her extra curricular schedule has become so busy. Oh well, it is what it is.....
We will be back in NY December 10-13 for scans again. Hopefully, she will remain stable and we can continue as things are now.

Sydney and Drew are being inducted into the Junior National Honor Society on Monday. They are both really doing fantastic in school. Sydney also has an honor choir concert on Tuesday night, and the first BB game is coming up where she will be cheering. Busy, Busy, Busy, we are around here.

Thanks for checking in, and I'll will update again soon, Michelle

Sunday, November 9, 2008 10:00 AM CST

Hello,

I am back in business now that I finished the Twilight Saga. It was really a great series, but I suggest you read it while on vacation. I truly neglected the family this week. The dishes and laundry piled up. We ate junk food all week, but it is over now, and things will get back to normal. Those 4 long books, were page turners, and every time I would say "I'll stop at the next paragraph", when I would get there, I just could not stop. Sydney finished the first book, and is on her way through the second one. We can't wait for the Movie to come out on Nov 21st. We will be at the Philly Marathon Expo then, so it will have to wait until Thanksgiving vacation. We are excited to attend this marathon expo because we are getting to squeeze in a visit with Kevin's grandmother and family in New Jersey while we are there. It has been a couple years since we have seen them, so we are really looking forward to it.

Sydney continues to do well. Her knee pain has started back up (like the day after my last update). I knew I should have never typed the words "she has no pain". I must have jinxed her. She wraps her knee in a 12 hour heat pad every day before school. It helps a lot. We decided not to have the knee surgery until after cheerleading season is over. We will re-evaluate the knee situation in January and probably have the surgery soon after - that is if everything is in check with her cancer.

We are anxiously awaiting the phone call on Tuesday night to see if Sydney is HAMA negative or positive. We over-nighted her blood sample on Thursday, and the test runs Monday-Tuesday. If she is HAMA negative, we will return to NY in another week or 2 and do another cycle of 3f8. If it is HAMA positive, I am nervous about what the "plan B" will be. At this point, I have no idea what they will suggest. Sydney has practically done everything already, at least once. I will just pray about it. We are hoping that her HAMA is negative, but if this scenario is anything like the past, it will be positive for another 6 months.

The kids got their report cards this week, and as usual, they both did excellent. I am so proud of my kids!!!!

I think thats about all for today. Thanks for checking in again, and I will update as soon as I know what the next plan of action is.

Michelle

Sunday, November 2, 2008 2:18 PM CST

Hello,

Sorry for the lapse in updates, but we have been pretty busy, just being normal. Syd is doing very well. She had cheerleading practice all week, and Try-outs for the team last Thursday. She made it!!! She is on cloud nine, and just so extremely happy that she gets to be a middle school cheerleader. More good news....Sydney was selected to be in honors chorus. She is already in regular school chorus, but now, she gets to travel around, and sing with other kids from all over the county. I think we are going to get a lot busier than we already are. Also, she got an invitation in the mail because she was nominated to represent South Carolina 7th graders at the Junior National Young Leaders Conference in Washington DC. It is a HUGE honor to be invited by the Congressional Youth Leadership Council. One of her teachers submitted her for it. She will get to spend a week in DC meeting lots of important people, and learning about leadership and our countries leaders - All for the bargain price of $2,000.00.
She is so excited, and can't wait to go. It will be in the spring.

On the medical side of things, she is doing ok. She has fully recovered from the 3f8 treatment. In fact, her knee has not been bothering her at all since the treatment. Coincidence?????? Who knows?? But it is awful strange that she practiced all week for cheerleading, and walked around trick-or-treating and never had any knee pain. We are just enjoying it while it lasts. She is finishing up the antibiotics for the stomach infection (c-diff), and she just started a new antibiotic for an awful skin infection on her leg. It turned black and red, and was so gross. It is getting better now, I think, but the med for it makes her dizzy. (always something...) She will have her blood drawn on Thursday for her HAMA test, and we will ship the blood to NY for testing. If it is negative (we pray it is), she will get another round of 3f8 (regular dose, not high-dose). And if it is positive, we do not have a "plan B" in place yet, so I guess we will figure it out when the time comes.

She dressed up as the bride of Frankenstein for Halloween. She looked more like the granny of Frankenstein because of her glasses. She didn't feel like putting on her contacts. It was cute. Drew was "Too Cool" to dress up, but he did run around with his friends. Somehow, he ended up with a bag of candy, but there were lots of kids who were trick or treating with no costumes on.

On another note... I am officially "sucked in". Everywhere I turn, on blogs, in the hospital, at the expos, random places, I keep hearing about these vampire books, called "Twilight". I don't usually sit down with a book because my mind races most of the time, and I can't concentrate on what I am reading. But, I saw the book Friday night in Target, and thought, "what the heck", and I bought it - just to see what the hype was all about. Well, I finished the 500 page book this morning (so unlike me), and I am hooked. I am dying to go out and get the next one in the series, but I know if I do, I will be useless to my family for another 2 days, as I have been these past two. I am addicted, I admit it. I will be getting the next book sometime this week.

That's about all for now. Thanks for checking in on us, and I will update again soon.

Michelle

Friday, October 24, 2008 3:50 PM CDT

Saturday,

We made it home safely......Let the sleeping marathon begin!!!!!

********************************************************************************************************
Friday,

Hello, We are Finished!!!!

Today was supposed to be the easiest day for Sydney, but that was not the case. She had the most pain today out of all the days this week. She needed 4 dilaudid rescues. The pain just never went away. She is still in lots of pain now, here at the house, but she is resting watching sponge bob. The hives came and went - not too bad, and it was only 1 wave today (so far). Her temp held stable all day (slightly elevated, but never spiked). Anyway, we are just so glad we are finished, and headed back to Charlotte tomorrow morning!!!

Syd had some stomach issues this morning, and is being tested for a gut infection called c-diff. She's had it before, and it's not a huge deal - just lots of cramping and diarrhea.

We will send a blood sample back here to NY in 2 weeks for a HAMA test. If it is negative, we will return for another week of antibodies, if it is positive, we will need to come up with a plan B. She has completed the high-dose 3f8 protocal, so if we come back for more, it will be the regular dose which should be a bit easier on her.

Thanks for checking in on us and praying with us throughout the week. I may not update for a couple days because I plan to sleep for about 50 hours when I get home. J/K - I will update again soon,
MIchelle

Thursday, October 23, 2008 3:16 PM CDT

Day 4 is almost over (the hardest part of the day is over). Sydney had another rough night last night. I had the alarm set to replenish her meds every 3-4 hours through the night. She needed dilaudid for pain, visteril for hives and itching, and Ativan to help keep her calm. The neuropathy pain in her hands and feet is really hard to control, and she just lays on the bed and cries. It's heartbreaking - and that is just the after effects of the 3f8.

This morning, we went to the hospital, and Syd was hurting pretty badly. They immediately started her IV meds, and it started to make her feel a bit better. After we finished all of the pre-meds, we got started with the 3f8 by 10:30. The treatment went slightly better than yesterday. She screamed only a couple times, and the hives weren't as bad. I knew it was just too good to be true.

Soon after, she started the shaking and shivering, temp dropped slightly, then spiked. Cultures were drawn, antibiotics were given, oxygen mask was on, and we just waited and held our breath for it all to be over. About an hour later, the second wave of hives came. This time they were much worse than the first wave. She had the burning hives "down there" and her upper lip swelled up pretty big. More meds were given, and we waited some more for them to work. Around 3:00 we left the hospital. ABout the time we got back to the RMD House, I noticed that we were having a third wave of hives. I have just medicated her AGAIN, and am praying that they go away so that we do not have to return to the hospital. She is calm, they are not burning, and do not seem to be as bad. Her feet are hurting pretty bad too (7 on a scale of 1-10) so I just gave her another dilaudid. Im pretty sure she will sleep for a while.

I am just so happy that we only have one day left of this torture. The neuropathy will probably continue through the weekend, but we are prepared (I think). We are flying home early Saturday morning, and can't get there soon enough. Kevin and Drew made it to DC, and they are selling Sydlets at the Marine Corps Marathon Expo. Pray that they are successful, and have a safe trip back home on Sunday. I miss my guys so much, and can't wait to see them again. Thanks for checking in again, and thanks for all of the prayers, I know He is listening and keeping Sydney safe.

Until tomorrow, Michelle

Tuesday, October 21, 2008 7:08 PM CDT

Hi again, Day three is behind us, and we are "over the hump". Only 2 days of this misery left!!!! :)

Today was pretty much the same as yesterday. She had all of the same issues with the exception of her temp drastically dropping. It started to drop, but we were able to control it better, then she spiked a fever again. So, I think the prayers are being heard because even though it was awful and scary, each day has been a bit better than the day before. We got an earlier start today, so we are back at the RMD house earlier (4:30). I think (hope) that will lead to an easier night tonight, although I have no idea. Last night was really hard on her again, and we got pretty much no sleep. Right now, she is in pain in her feet and she has many left over hives. We are continuing meds around the clock throughout the night.

Thanks again for checking in on us, and for all of the prayers. I hope that tomorrow and Friday keep getting better with minimal side effects.

Michelle
******************************************************************************

Day 2 is finally over!!!!! Let me first say thank you for all of the wonderful inspiring messages left on the site and most of all for the prayers flooding Heaven for Sydney. After today, I ask that you flood Heaven more because it was another horrible day, although not quite as horrible as yesterday.

I will just start off where I left off last night. Syd slept until around 3am. She woke up to extreme pain in her feet, called neuropathy (common with older patients getting 3f8). She needed dilaudid for the pain, and I massaged her feet for about an hour until she was able to relax. We slept for a little bit more, and around 7am, the same pain, only it was in her feet and hands. We did the dilaudid again and massages. She could not walk or use her hands. It was crippling pain. Then we headed over to the hospital.

After arriving to the hospital, we were instructed to go for x-rays of Sydney's knee and femur. She was miserable, but we wanted to get a second opinion before letting the ortho Dr in Charlotte cut her knee open. After x-ray, we saw the ortho Dr here. She was nice, but could not accurately examine Sydney because she was half asleep and doped up on pain meds already. We decided that will see her again on Friday morning for a better consult.

Finally, it was around noon, and we went back to the bed area of the 9th floor to begin the 3f8 treatments. She got all of the same pre-meds, with the exception of Dilaudid (Yes, NO pain meds), and we added Ativan to the cocktail. The Ativan was supposed to relax her better, so that she could tolerate more pain without freaking out. They believe that she just had way too many pain narcotics yesterday and that is what caused her coma-like state.

The 3f8 began around 1:00pm. Sydney was very calm and sleepy, but awake. Her pain started about 15 minutes into the infusion. It was amazing how much calmer she was able to be with the ativan on board, however, she was in extreme pain. She got 2 dilaudid rescues (1/2 the amount of yesterday). She needed to go to the bathroom right in the middle of it, so we got her up and noticed a few hives on her shoulder. I took her into the bathroom and literally watched them multiply and travel all over her body. I tried to stay calm, but I knew that any minute she was going to start freaking out. She looked down at her legs and said I have hives. I said yep, but it will be ok, we will get more visteril when we are finished. Then she screamed "they are the burning hives, and they are in my private". She has hives in areas that have never seen the sun, and they were burning her (not itching). We hung the meds, and she immediately wanted her clothes off and ice rubbed all over her body to stop the burning. She was in such pain, but again, the ativan kept her from going over the deep end. About 45 minutes later, we got the hives under control, and she fell asleep.

We thought we were done, and could relax, but we were wrong!!! Syd started shaking again. She was freezing (hypothermia). Once again, we had the same drama as yesterday. The room filled with so many people over her (even Dr Kushner) to get her blood flowing, and warmed up. None of her vitals were picking up on the monitors, and she would not wake up. After about 40 minutes, her temp started to rise and normalize, although she continued to shake. We started removing the heat packs and blankets so she could rest. Soon after, she started to spike a fever. The temp continied to rise. It was a nightmare. She took some tylenol and started IV antibiotics, as well as blood cultures were drawn. About 1/2 way through the antibiotics, the raging hives came back and covered her body again. This time, they did not burn her, just annoyed her. She had another rescue, and the hives went away within an hour.

That was our second day of 3f8. The good news is that she did not have any non-breathing issues today, but we had other issues that were pretty awful. The NB team had theur weekly meeting today and talked at length about Sydney and these past 2 days. They are very concerned about her issues, and are nervous about how the next few days will go. The trend is that each day will get less intense, but with Syd, everyday is different, so who knows what will happen. I was given the option to quit 3f8 but they let me know that they were prepared for all side effects that she might have. They alerted everyone to her issues, and felt that she would be ok to finish the treatment - even though it would be very difficult. I have this overwhelming feeling of guilt for putting her through this, but Kevin and I talked it over, and if not this, than what????? She has no other treatment options right now, so we really need to soak as much of this treatment in as possible before she gets HAMA. I will never forgive myself if something irreversible happens to my baby, but at the same time, this could be her miracle, right???? Please just pray they God will wrap his arms around her this week and keep her safe, and make the awful side effects of the treatment minimal.

She is resting tonight. She is awake on and off trying to watch Dancing with the Stars. She has a few "spots", but I am setting my alarm to give her visteril every 4 hours. She has a heat wrap around her feet for the neuropathy pains, and her temperature is low grade. We are watching it closely, in hopes that it will not spike again (that means an automatic admission into the hospital).

Thanks for checking in, and as always, I will update again tomorrow. - Michelle

Monday, October 20, 2008 6:20 PM CDT

Well, Day one is over, and it is definately one that I will never forget!!!! Today was awful, scary, and a day that I never want to have to experience again. I pray that tomorrow is better, and I beg all of you reading this to please pray for an easier day for Sydney tomorrow and the rest of the week.

The day started off pretty normal for a Monday. We waited around for her fingerstick. Then we waited around for her port to be accessed. After she was accessed, she had 4 tubes of blood drawn for testing. About 30 minutes later, the nurse realized that she needed 2 more to draw, however this time, Sydney's port wouldn't work. No blood would come out of it. After playing with it for a little bit, she got the extra blood out that she needed. Then, we waited some more to see the Dr. We visited with Dr Kushner for a bit and then it was time to begin the 3f8. Syd had lots of pre-meds to take first. They consisted of IV visteril, IV zofran, IV zantac, IV Dilaudid, oral tylenol, claratin, neurontin, and a breathing treatment of zopinex.

After all of that, the infusion of 3f8 began. It started out pretty much the same as all of her past experiences. She started getting aggitated about 10 minutes into it. She asked for some ice packs for her stomach and back. Then, the screaming began. She screamed for a good 15 minutes, as we held ice packs all over her body, and the nurses gave her rescues of dilaudid and visteril. All of a sudden, the screaming stopped, and she started gagging and saying "my throat is full, I can't breathe." She was not getting air to her lungs, and they were filling up with mucus. She started throwing up the mucus, and her eyes rolled back in her head. We could not wake her up. She was out. I was shaking her and the nurse was saying "stay with us Sydney". I didn't understand what was happening, as this symptom has never happened for Sydney before. It lasted about an hour of her just completely "out of it". She needed 6 breathing treatments to open her lungs up, and even still she was wheezing and gurgly. It was terrible. We finally thought things were under control, when something else happened.

All of a sudden Sydney started shaking uncontrollably. It reminded me of when she was septic, however she didn't have a fever, it was the opposite. Her body temperature started dropping and she was freezing. She turned blueish-purple. Her monitors would not pick up her vitals because the blood was not flowing. Her temperature was 34.1 degrees C, which is like 90 degrees F. We immediately got out heat packs and blankets and smothered her with them. We were massaging her legs and arms to get the blood flowing, and had heat packs under her arms, in her groin, behind her neck, back and stomach. It took about an hour to warm her up. She also needed 3 doses of anti-narcotic meds to reverse the effects of all of the pain meds she had been given, along with a treatment of epineferin. There were so many people in that small room taking care of her. All the while, she was out of it, which made it so scary. She could not respond to me when I would try to talk to her. She would open her eyes, mumble something, them pass out.

Finally, around 5:00, things started to calm down, and everything returned, pretty much, to normal. Sydney was still sleeping, and moaning, but her BP, OX, and HR were back to normal. I was given the option to stay overnight at the hospital for observation, but they thought that she would be ok to leave. We sat and watched her for another hour before leaving, just to make sure another episode didn't happen. She was ok.

We are back at the RMD house now, and she is still sleeping next to me, and moaning. She is wrapped in a heat pad around her knees - which are in pain. I gave her a benadryl for her throat, and I am trying to stay away from any pain narcotics tonight. I hope she doesn't need any later. I am laying right next to her and will be listening to her chest all night, as well as making sure her temperature is normal.

Today was really scary. There were a few times I thought she was going to slip away into some dreamland and not wake up. Tomorrow, we are going to do her meds differently, and hopefully, it will be a better day. This high dose 3f8 really sucks, and I ask that you please pray for Sydney and the other kids who are going through this torture to beat their cancer. By the way, the "Hive Queen" did not have one single hive today. It is so strange how each treatment is different.

Thanks for checking in on us, and please pray that the rest of the week gets easier on my baby. If any of her teachers are reading this, she will not be completing her work until we get back home. This environment is way too stressful and unproductive.

Until tomorrow, Michelle

Friday, October 17, 2008 10:49 AM CDT

Hi again,
We arrived safely, here in NY, this afternoon. The flight was bumpy, but went by quickly, as Sydney entertained us with her silliness. I will update tomorrow after the first 3f8 treatment.

******************************************************************************

Hello,

We made it home safely from Chicago. We had a great time with out friends, the Monroe's and Rich Block from the RMD house in NY. The Sydlets were not successful, but we did give out lots of business cards. Hopefully, lots of holiday orders will start coming in soon :) Sydney, my Mom, and I will fly to NY on Sunday for the dreaded week of torture, known as 3f8. Hopefully, the week will fly by with minimal pain, and successful combatting of her cancer!!!!

Kevin and Drew will drive to Washington DC on next Wednesday night to sell Sydlets at the Marine Corps Marathon Expo Thurs, Fri, and Sat. His Mom will fly to DC to help him out. This was totally unexpected, as I had the dates wrong of the marathon. Me, in my totally stressed out mind, thought that the expo was this weekend (yesterday, today, and tomorrow). Unfortunately, I drove all the way to DC on Wednesday, spent the night, and went to the DC Armory yesterday only to find out that I was there a week early. I felt so dumb, and was so mad at myself the entire 7 hour drive home yesterday. What a mess things are , in my head. I have so much going on that I just can not keep it all straight - even with a calendar. Now, poor Kevin and Drew are having to take care of business for me. I just feel terrible about it.

I did hear back from Sydney's Ortho Dr yesterday. He feels like she needs the knee surgery to remove the physeal bar from her L proximal tibia growth plate. Her leg is growing crooked and with the 2 years left of growth, he said that she could have a pretty severe deformity in that leg. He is exploring ways to do the surgery that will be the least invasive for her with the quickest recovery. Unfortunately, he still believes that the bar is not what is causing all of her pain. He is still trying to figure that out for us. He suspects that the pain is being deferred from the hip/femur area (where her cancer is). Who knows???? Hopefully soon, we will be able to figure out the mystery of Sydney's left leg,

That's about all for now. Please pray for safe, successful trips for us in this coming week. I will update daily - as always- while we are in NY during the antibody treatments. We are not looking forward to it.

Thanks for checking in, Michelle

Wednesday, October 8, 2008 2:12 PM CDT

Hello,

Sydney had her appointment with the peds. ortho. d.r today, and after lots of good discussions, we still have no plan. Yes, she has a physeal bar growing in the growth plate of her L tibia, but it is very small. The actual stress fracture/trauma to that area is because she has weakened bones due to chemotherapy and radiation - it may not heal. The bar in the growth plate is causing her tibia bone to grow crooked, however, she only has 2 more years of growing to do, and that particular bone will only grow about 22 mm in that time (average). She also has her left hip that is turned inward, as well as her left foot that turns inward. So basically, the doctor said that he has a lot of homework to do before making a decision on what to do. There are a lot of factors that come into play with that particular leg, and our main goal is to get rid of Sydney's knee pain. He does not believe the bar is causing the pain. A few of the options he mentioned were..... surgery, but not leaning towards that because the bar is so small and he does not think its what is causing the pain anyway........A smaller surgery to stop both growth plates in each tibia (right and left) from growing, so that her legs will be equal, and the left one will stop growing crooked....... he also had a few other things that he said he would have to think about. He is going to review all of her previous MRI's, x-rays, and the CT scan to make his decision. He said he will call us tomorrow or Friday with some answers. So..... we wait some more.

Tonight, around midnight, Kevin and I will be heading out in the van to Chicago. We are making the 12 hour drive, and hope to arrive around noon tomorrow at the marathon expo to set up the Sydlet booth. We are not looking forward to making the drive. Also, it is tearing me up because this is the first time that Kevin AND I have been away from the kids (ever)!!!!, And we will be away until Monday. I will miss them terribly, but they are in good hands with my Mom.

Tomorrow is also Kevin's and my 15th wedding anniversary. It won't be very romantic making a 12 hour road trip, followed by manual labor at the Expo center, but we will be in Chicago together, so hopefully, we will be able to spend a nice night out after all of the work. I can't believe how lucky I was to find the man of my dreams when I was 19 years old. Happy Anniversary Sweetie!!!!

Another special day this weekend is Sunday. Drew will be turning 13. Ouch!!!! My baby boy is a teenager, and boy, do I feel old!!!?!!!! Happy Birthday Drew!!!!!

Please pray for safe travels for us this weekend, pray that the kids and my mom will have a good time together and be safe, and that Kevin will do well in the marathon on Sunday. He has several blisters on the bottom of his feet from the past 2 days at work (walking around in Washington DC in dress shoes), and it will be pretty difficult to run 26.2 miles with already blistered feet.

Thanks for checking in, and I will update again when I hear from the doctor about Sydney's knee.

Michelle

Tuessday, October 6, 2008 2:40 PM CDT

NEW UPDATE: Tuesday Oct 6

Sydney has her appt with the new Ortho Dr tomorrow morning. When we get back home, I will give a full update.

Thanks for checking in, Michelle

********************************************************************************************************

Hello again,

Just a quick update:

Sydney had the CT scan of her knee/tibia growth plate yesterday. I got the call from her Ortho-Oncologist this afternoon letting me know that his diagnosis was correct. She has what's called a "Physeal Bar" in the proximal tibia growth plate, along with a stress fracture (that we already knew about). You can Google what a physeal bar is - that is what I had to do to figure it out. Apparently, it is pretty serious, and could stop her growth if it is not removed. It is in the same leg as the cancer in the femur (left), and the femur is already not going to grow anymore. We do not want the bottom bone in the leg to not grow either.

So....what next?? We are being referred to a specialist (pediatric orthopod), who deals with this sort of thing much more than the Ortho Oncologist. Hopefully, we will get in to see him soon, but basically, he will need to do surgery to remove the physeal bar, and replace it with something else to keep it from growing back, and the fracture needs to heal. We do not know how invasive it is, or how long the recovery will be. I have lots of questions for the new Dr. I really hate that she has to go through another surgery, but the Dr thinks it is needed.

We will be in NY Oct 19 - 25 for 3f8 antibody therapy, and I will try to get a second opinion while we are there and make sure we are doing the right thing. Although, this knee pain has gone on too long, and Syd just wants it to be fixed so that she can be out of pain.

Thanks for checking in on us again. Please pray for complete healing for Sydney and all of the children fighting for their lives everyday.

Until next time, Michelle

Monday, September 29, 2008 11:42 AM CDT

BONE MARROW RESULTS ----- NEGATIVE YEAH!!!!!!!!

Hello again, Just a quick update.....

Syd's CT is scheduled for this Wednesday. Hopefully then, we will get some answers. She has been having some on and off again pain since her Dr appt last week. The Dr manipulated the knee a lot, and she thinks that is why she is on pain. Today, she broke out the crutches again, as she felt like she could not walk on it all day. I hate that she has to deal with this.

Still no word on the bone marrow results (some rush they put on then, huh???)

Please say a prayer for our good friends, the Millers. It seems their son, Jake's, cancer has progressed once again. He has been battling this beast for about a year and a half longer than Syd. He is a true fighter!!!! Sometimes, things just seem so unfair.

I will update again soon - as soon as I hear anything

Michelle

********************************************************************************************************

THURSDAY SEPT 25

Hello,

Well, Sydney's bone marrow results are still not in......so that means we can not start 3f8 next week like we had planned. Now, she is scheduled for 3f8 on the week of October 20th. She will begin the Gm-CSF injections on the 15th. That is all assuming that her bone marrows are ned. Her PET scan results are stable.

Today, we went to see the Ortho Oncologist to follow up with the knee issues. The MRI shows improved stress fracture in the knee, and tibia stress fracture is still there. The Dr today thinks that it is not a stress fracture, but that she has a "bar" growing in the growth plate of the tibia, causing the tibia bone to look fractured, and is growing tilted instead of straight. The "bar" is sort of like another bone type thing growing that should not be there. He did x-rays today and saw a difference from the x-rays 2 months ago. Anyway, he is not sure if his diagnosis (guess) is correct, so he wants to get a CT scan of the knee area. He said the CT will show exactly what is going on in there. If he is right, he said that Sydney will need surgery to remove the "bar" and replace it with something else, so that it will not grow back. This is not cancer related, I think. Anyway, there is always something going on with her. Hopefully, we will get the Ct scheduled quickly, and get some answers.

Thanks for checking in, and I will update when we know what is going on.

She has another oncology appointment tomorrow for a pentamadine treatment and a cbc.

Tonight, we are going to our first support group meeting at the hospital. We figure it will be a good way to meet some people who can understand what we are dealing with, and hopefully, make some new friends.

For all of the marathon runners out there,

I will be at the expo's of the Chicago Marathon (Oct 9-12), Marine Corps Marathon (Oct 16-18), and the Philadelphia Marathon (Nov 21-22) selling our new marathon Sydlets. If you are in the areas, come out and see us.

Until next time, Michelle

Friday, September 19, 2008 2:09 PM CDT

TGIF.......

Hello, I am just so happy to report that the week is over. It was long and hard, but ended up ok, and we got stable results. - No complaining about that!!!

This morning, Sydney was NPO (no food or drink)again, except for the lovely CT contrast she HAD to drink and be finished with by 7:30am. We made it to Ct by 8:00, and her scan was on time. After that, we headed back up to the 9th floor to prepare for her bone marrow biopsies, which were scheduled for 11:00. They always want you there early, incase they are ahead of schedule, or there is a cancellation. Unfortunately for Sydney, the opposite happened. They were running behind, then they had to squeeze an emergency procedure in. Finally, around 2:00, Sydney was called back. She was good and grouchy by then, due to a lack of food. She woke up from the anestesia about 30 minutes later and immediately wanted a bowl of Captain Crunch cereal (I was prepared for that). As she ate her cereal, she was de-accesed, and got one final push of her Dilauded pain med for the ride in the stroller back to the house. She is now in bed, in and out of it due to the narcotics, and in and out of pain. We will just rest for the remainder of the day.

I did manage to get a few more results before we left....

CT scan - scar tissue on the lungs is stable, and and the small node in her right lung has shrunk just a bit from (1 x 0.7cm) to now (0.9 x 0.4cm).

MRI Femur - Stable femoral lesions - two metastases in the proximal femur ae stable.

MRI knee - Petalla stress fracture has nearly resolved.
Medial Proximal Tibia stress fracture is stable to slightly increased.

Urine - VMA - 3 (normal is less than 5)
Urine - HVA - 7 (normal is less than 8)

Complete Blood Count (CBC)
White Cells - 1.5 (normal is 4-11)
Hemoglobin - 10 (normal is 11.5 - 16)
Platelets - 70 (normal is 160 - 400)
ANC - immune system - 0.6 (normal is 1.5 - 8.8)

OK, so there you have it. All cancer is stable, no progression. Her knee is healing, however the stress fracture in her tibia (bone under the knee) is not, maybe getting worse, although she is not in much pain unless she walks a lot. We will follow up with the Ortho Dr again when we get home to address that. Her Urine levels are completely normal!!!! Her blood counts are crap, as usual. They are always low, and she is always at high risk for infections, bruising, and bleeding.

Overall, we are leaving here satisfied. We are still waiting on the results from the PET scn and the Bone Marrows. Hopefully and Prayerfully they will be in by Tuesday's team meeting and the NB team will be able to make the final decision for 3f8. If the results are not all in by then, we will have to wait until the following week.

Thank you so much for all of the wonderful messages and emails to get us through this stressful week. (and prayers, of course!!) We will be on a flight home tomorrow morning. YEAH!!!!!

Thursday, September 18, 2008 3:07 PM CDT

So glad today is over!!!! It was by far, our LLLOOONNNGGGEESSTT day this week, so far. The PET scan was on time and went very smoothly this morning. After that, we had a quick, bite to eat at Mc Donalds, and then returned back to the hospital for the dreaded MRI's. They were supposed to take an hour and a half, but ebded up almost taking 3 and a half hours. It was pure torture on Syd, and me, but we made it through. When that was finished, around 3:30, we went up for the Echo (Syd calls that the jelly test). Then we went out to the PDH waiting room, and waited for a person from the team to come out and give us some results. Fortunately, Dr Kramer and Dr Modak walked by together and told us to come on back with them.
So far, we have results for 3 of the scans....

MRI - brain - Normal

MRI - thorasic spine - stable (normal for Syd)

MIBG - "Grossly Stable" - those were the words written on the report. The questionable spot in the right hip has vanished YEAH!!!!! and the Femur is the same (grossly stable). We are so happy to hear this news. Although we wish that cancer in her left femur would vanish too, we are happy that it has not progressed.

Tomorrow, Sydney has a CT scan of her chest, abdomin, & pelvis at 8:20. At 11:00, she will be put under anesthesia for her bone marrow biopsies. Then, we are finished with the week of tests, and will be on a plane Saturday morning headed for HOME!!!!!

I am hoping to get some more results tomorrow, but I may have to wait until Monday. We are still waiting for PET scan, MRI femur, MRI knee, CT scan, BM, and Urine.

If all scans are stable, the plan is for Sydney to start her GM-CSF injections next Wednesday, and fly back to NY on the 28th to start 3f8 treatments on sept 29th - Oct 3. However, that plan will not be confirmd until the NB team
meets next Tuesday to discuss all results and make the final decision.

Tonight will be a quiet night. The RMD House is having a BBQ for dinner, and I know I will be turning in early.

Thanks for checking in. I'll update again tomorrow

Michelle

Wednesday, September 17, 2008 3:30 PM CDT

Hello again,

Today began with an MRI of Syd's thorasic spine. It took about an hour and a half. She fell asleep, and I read a book of hers that the school required called "On my Honor". It was so sad, and I wept through the last 5 chapters of it. So, she has had 2 MRI's done, and 2 more to go tomorrow.

After that, we went to get her Echo, whch we found out was cancelled, rescheduled for tomorrow afternoon. That gave Syd a chance to eat a bowl of cereal and do a page in Math before heading to Nuclear Medicine for her MIBG scan.

When we got there, they took us back to the "special scanner". Everyone with a child with NB knows that is NOT a good sign. The special MIBG scanner is the one that they use when they need a better look at something. I started sweating, and immediately asked why we were in there, rather than a regular scanner. (the panic and fear came over me, and it is so hard to control in this crazy, unpredictable world of cancer). The answer I got was, "this is the only scanner available". Ok, so I felt a bit better after that. They started the full body scan, but I could not see the monitors to watch like I normally do. They had the monitors behind a wall. I was a nervous wreck not knowing what was going on. Then, it was finished, and it ws time to do the spec part of the scan (a 3-D image of her body from the neck to groin). However, instead of doing the spec, he rscanned her head. Again, I flipped out asking why he was doing that. I know the drill, we have been doing these scans for almost 5 years - they have NEVER re-MIBG scanned her head before. His explaination was that they wanted a closer look at her sinuses. She has had a cold for the past 2 weeks, so hopefully, he was telling the truth. The spec followed, and then we were out of there. I am extremely anxious to get to the hospital tomorrow and get some results. Scan time is the most stressful time for us parents. All of the "what-ifs" come to mind, and make us crazy.

When we left the hospital, we went to the taco joint across the street for lunch. We go there alot, and they are always so happy to see Sydney. The owner treated us to lunch, and gave Sydney a huge plate of Churros - her favorite. We did some window shopping after, and walked those churro's off.

We are back at the house now, trying to get some more homework done. It is so distracting at the hospital for her to concentrate, plus, she is usually doped up on Ativan to relax her for the scans.

Tomorrow, we have a very long day. When we wake up, she will be NPO (that means no food or drink after midnight tonight). She will have a PET scan injection at 9:00. Then she has to sit in a quiet room for an hour for the isotope to circulate through her body. The isotope goes to active areas in her body, so she can not be active, or it will give a false reading - even her brain can't be active. They prefer it of you can just sleep. The goal of the PET scan is for the isotope to go to the active cancer in her body. The scan will follow at 10:00. At 12:00 she will have her 3rd MRI of the week. This one will be of her left femur. At 1:00. she will have another MRI - of her left knee/tibia to check the status of the stress fractures that showed up in July's scans. At 2:30, she has her Echocardiogram. Then, we will finally be able to consult with the team and go over any reaults that may be in. I am guessing we will have results on the MRI-brain, MIBG, MRI-thorasic spine, and maybe PET by then.

After that long, exhausting day, Im sure we will be ready to crash back at the house early for bed.

Thanks for checking in again. Please pray that we get some good results tomorrow.

Michelle

Wednesday, September 17, 2008 3:30 PM CDT

Tuesday, September 16, 2008 4:28PM CDT

TUESDAY SEPT 16

We made it through day 1 of scans. It was a long day, but Syd was a trooper, as always. We had an hour break (around lunch time)so we had a picnic in the park across the street from the hospital. The weather was beautiful - the high temperature was only 73 today.
After her MIBG injection, we headed back to the house to get some homework done. She is not feeling great, but we are managing to get some of it done.

Tomorrow, she has an MRI of her thorasic spine at 8:30. After that, she has an echo at 10:00. Then, at 11:00, she has her MIBG scan. That is the "most important scan" for Neuroblastoma. It is specific to the disease and will immediately show us if there is any obvious new disease. She has no other scans scheduled for tomorrow. We should be finished by aboout 1:00, unless I think I see something on the scan. If I am stressing about it, I will go back and stalk the drs until one of them looks at it and lets me know what I saw. Hopefully, nothing new will show up, and the old spot in her femur will be gone!!!!

I will update again tomorrow!!

******************************************************************************

MONDAY SEPT 15

Hello,
We made it safely to NY. The flight was quick and painless. There was another family on the flight with a child with NB. Such a small world......

We had a trip to Virginia last weekend that we will never forget. The guys did great with the bike ride. They rode their booty's off. The women and children did our own thing. To make a very long story short, we spent 7 hours in the ER on Saturday due to an unfortunate trampoline accident. Little Mackenzie Monroe was popped into the air, landed on her arm, and broke it, along with dislocating her elbow. It was a long day, but we were glad that we all could be together. Overall, we had a fun weekend, and it was fun catching up with the other families. We visited Graces site at the cemetary on Sunday, went out for ice cream, then Sydney, Landon, and Mackenzie released balloons up to Heaven for Grace and Marissa.

We made it back home late last night, only to get up today and drive another 2 hours to the airport. The flight was great. When we got here at 5:45, we checked into the Ronald McDonald House, and went to Sydney's favorite Chineze restaurant across the street from the house. When we walked in, they asked us if we wanted "our usual"....We have been coming to NY for way too long!!!!!

Tomorrow, our day at the hospital will start early at 8:00. Sydney will have her port accessed, and labs drawn. Then we will see the NB team and pick up all of the "supplies" she will need for the week, like her sski iodine drops (to protect her thyroid), her 24 hour urine collection containers, her contrast for the Ct Scan, etc.

At 10:00. she has her first MRI of the week. It will be of her brain. She fell and hit her head against the wall over the weekend, and I am praying that it does not show up on the scan (mistaken for disease). After that, at 1:00, she has her MIBG scan injection. It will be a pretty easy day for her except for the MRI. She hates them, and sort of freaks out, but we pre-medicate her with ativan to take the edge off.

We plan on getting to bed early tonight. It was a long day, and we are pretty exhausted. I will update tomorrow when we are back here at the house. We should not start to get any results until Thursday or Friday, but if any come in early, I will be sure to post.

Thanks for checking in!! Until tomorrow, Michelle

Monday, September 15, 2008 9:47 AM CDT

On our way to NY today. I will update when we get there. Please pray for safe travels!!!

Until later this evening,
Michelle

Friday, September 5, 2008 12:39 AM CDT

Tuesday Sept 10

Hello,
Syd and I got a corporate angel flight to Ny on Monday. What a relief. Now we just need to be patient for a return flight home next Saturday.

Sydney has not been feeling well for a couple days. I have been sick since last Wednesday with a horrible cold and sore throat. I went to the Dr yesterday, and I am being treated for Strep, but it could be a virus. I am thinking it is a virus because my antibiotics are not working yet. Anyway, I have had to pick up Syd early from school yesterday and today. If she has what I do, it could last a while. So far, no fever, but she has a cough, runny nose and just a general feeling of sleepiness (I do too).

That's about all for now. Please spread the word about the Loneliest Road reunion ride. It is this Saturday and sunday. We are looking forward to it.

Please pray that Syd starts feeling better soon, and that a fever does NOT occur. The last thing she needs is a 3 day hospital stay.

Thanks for checking in

*********************************************************************************************************

FRIDAY SEPT 5

Hello,
Things are going well, here at home still. The kids are doing great in school. I do not ever remember having so much homework in 7th grade. Last night, Poor Sydney had homework in all 6 subjects, and sat at the table from 4:00 until 10:00 trying to get it done. Then she had 30 minutes of reading to do, but I let her skip it. I feel so bad for her because for the last several years, she has not had to deal with too much homework, but now, it's like she is overloaded. Drew has mostly the same homework, but he is used to it, and finishes it much faster. She will hopefully get better at it soon, or Im afraid she will get burned-out.

We will be traveling back to Virginia next weekend for the Loneliest Road Reunion Ride. It will be 4 of the original Dads riding along with lots of other people in VA riding for the cause. Remember, September is National Childhood Cancer Awareness Month, and raise money for research is vital for finding the cures. Even though 2 of the LR children passed away since the original bike ride (last September), their fathers are still fighting to raise money for the rest of the children who are still battling - like Sydney. Please go to the Loneliest Road Website to read all about the ride, and please donate!!!

www.loneliestroad.org

This is from the site......
On September 13th, the newly designated National Childhood Cancer Awareness Day, Alec Oughton, Randy Monroe, and Kevin Sims will be joined by members of the Henrico Fire and Chesterfield Fire Cycling Teams in a "Loneliest Road Campaign Mini Reunion Ride" to honor children who have earned their wings and children who are still battling neuroblastoma. We are asking for pledges as they take on 172 miles over two days. 100f the funds raised will benefit the Loneliest Road Campaign and aid researchers who are working tirelessly to find a cure for Neuroblastoma. Please help us make this a success and, if you feel inclined, come out and show people how much these little warriors mean to us all!!

Sydney and I hope to fly out right after to NY on Monday Sept 15th. Her scans and biopsies are scheduled for Tues - Friday. We are praying that we will be able to get corporate angel flights - No luck so far, but we still have a week. Or, if anyone knows of anyone who would like to donate Frequent Flyer miles to our family, we would be so extremely thankful. We have to make 4 flights in the next month, and there is just no way for us to afford it.

that's about all for now. We would like to thank everyone for checking in on us again.

Michelle

Tuesday, August 26, 2008 9:47 AM CDT

Heart of Virginia LRC Reunion Ride
September 13, 2008

On September 13th, the newly designated National Childhood Cancer Awareness Day, Alec Oughton, Randy Monroe, and Kevin Sims will be joined by members of the Henrico Fire and Chesterfield Fire Cycling Teams in a "Loneliest Road Campaign Mini Reunion Ride" to honor children who have earned their wings and children who are still battling neuroblastoma. We are asking for pledges as they take on 172 miles over two days. 100f the funds raised will benefit the Loneliest Road Campaign and aid researchers who are working tirelessly to find a cure for Neuroblastoma. Please help us make this a success and, if you feel inclined, come out and show people how much these little warriors mean to us all!!

****************************************************

HAPPY BIRTHDAY SYDNEY!!!!!! SHe is 12 years old today. WOW!!!!

We got the call from NY last night. So, the plan, for now, is...... fly to NY Tuesday, Sept 16th. They are scheduling a Huge work-up for the 17th, 18th, and 19h. The work up this time will be
24 hour Urine collection
MIBG Scan
PET Scan
Echocardiogram
Bone Marrow Biopsies and Asp
MRI Brain
MRI Thorasic Spine
MRI left Femur and Knee
CAT Scan Chest, Abdomin, Pelvis

This is the largest work-up she has ever had. They are giving her everything possible. I am not exactly sure why, but it will be a very LLLOOONNNGGGG 3 days at the hospital.

Our plan is to fly home Saturday, Sept 20th. If all is stable, she will begin GM-CSF injections the following week, and fly back to NY on Sunday Sept 28th to start 3F8 Antibodies on Sept 29th for one week.

This is the plan, and things wouldn't be normal if it doesn't change a couple times, but I will update as these things happen. We have 2 more weeks at home to enjoy just being normal. I refilled Sydney's Thalidomide/celebrex meds to re-start and take until she begins the 3f8. These meds make her so sleepy and require much more sleep than usual, so I am hoping she will not have a problem with school. We will see what happens. Thanks for checking in again, and I will be in touch after the weekend.

Please continue to pray for all of the children battling, and for the families of the children who are in Heaven, like our friends the Monroe's, whose beautiful daughter, Marissa became an angel 2 months ago. I am changing the color to purple for them, and to honor Marissa.

********************************************************************************************************

Hello again,

I have found myself feeling uncomfortable again in this very quiet house. I have the TV on for noise, and the dog is keeping me company. I miss having my kids home so much!! However, I am just so happy that they are both in school this year, and things seem to be going well. The lack of sleep is catching up with Sydney. She did not want to go to school today because she was just too tired. Normally, she sleeps for about 11-12 hours, and that has been reduced a little to about 9 hours. It makes a big difference for her. Hopefully, she will become adjusted pretty quickly. It was hard for me to make her go, but I know she needs to be there.

sorry about the microscopic picture. I took it on my phone and cant figure out how to enlarge it. It is a picture of Sydney, Kevin, Drew, & my mom racing.

We had a good weekend. We took the kids and 2 of Sydney's friends to the Nascar Speed Park on Saturday for her birthday. They drove go-carts and played putt-putt, and bumper boats. It was fun, but very crowded and hot out there. After that, her friends slept over, and they danced under her new disco ball (thanks Debbie) and stayed up half the night. On Sunday, we went to see the Mummy movie and then hung out by the pool. The water in the pool is getting pretty cold again, and it's getting harder to go in it - such a change from FL. Her official birthday (12th)is tomorrow. I will make her a cake and she will open presents. She is excited about that.

This weekend, we will be in Virginia Beach at our first Marathon Expo, trying to sell the new marathon sydlets. It is called the Rock-N-Roll half marathon, and they expect to have about 45,000 people come through the expo. Please pray that we are successful because times are pretty hard right now with 2 houses to pay for. We really need these to sell well. We will drive back home on Sunday, when it is all over.

I am expecting to hear from NY tonight about the "new plan" of treatment. I feel like I sound like a broken record lately because we are always supposed to be getting a new treatment plan, then things change, and stay the same. It is so frustrating waiting around. I'll update as soon as I know something.

Thanks for checking in!!!!

Thursday, August 21, 2008 9:26 AM CDT

The kids had a good first day of school. They both really liked their teachers and each made a new friend. The bus driver messed up the route and skipped our bus stop, but other than that, everything went smoothly for them. Sydney had trouble opening her locker, but luckily, there always seemed to be a willing person to help her. Drew and Syd each have 2 classes together - Pre-Algebra, and Language Arts. I am happy about that because Drew can help Syd when she is away with all of the work she misses. They also have the same teachers for science and geography so that is helpful. Sydney has Art and Chorus for electives and Drew has Health and Computer. Overall, I think they are transitioning well (so far).

We got word from NY that our plan of treatment is changing AGAIN!!! I will update when I know something for sure.

Thanks for checking in

******************************************************************************

Hello, Today was the first day of school for the kids. I posted a new picture of them. I think they both are starting to look so grown up. They have to wear uniforms this year, which is new to them. Sydney is trying to spice hers up with accessories. They were both excited and a little nervous about starting another new school. I was thinking about it, and this is Drew's 6th school in his 7 years of school. That's pretty tough on a kid.
For me, today was bittersweet. I am so happy that Sydney is well enough to go to school right now, but at the same time I miss her so much. She has been with me for so long now and I am having a hard time with her being away. I had no idea I would feel this way, but when I sent them off this morning, a flood of emotions came over me and I just couldn't stop the tears. Kevin probably thinks I am insane because I called him so upset this morning, and couldn't explain why I was crying so much. I just feel like I don't know what my role is. My prayer is that when we return from NY next month, she will have a clean bill of health, and I will be able to return to work. Although, it has been almost 5 years since I have worked, I just do not know what to do. I don't know if I want to go back to teaching, or start something new. I will update again when I find out how the kid's first day went. 3:30 can't come fast enough for me today.

******************************************************************************MONDAY AUGUST 18thHello,Sydney continues to do well. She is feeling great and is ready to start school on Thursday. She is outside right now with Drew playing basketball. She has been having some pain for the past week in her left foot. She says it feels like neuropathy, but it seems strange to me that it would only be in one foot. The thalidomide she is taking can cause neuropathy, so we are really not overly concerned about it.It looks like we will be returning to NY in a couple of weeks. She will have another complete work-up of scans, bone marrows, and urine the first week in September. After that, hopefully, we can begin a new treatment. We are scanning about every 7-8 weeks, since March. I am happy they are keeping such a close eye on her. It kind of seems excessive, but we all know how fast this disease can take over a body in a matter of weeks, and it would be best to catch another relapse in the very beginning.Overall, it was a pretty good summer. We did not take any vacations, but we managed to stay really busy and have fun. It felt pretty normal (except for the trips to NY). I can’t believe the kids start 7th grade this week. WOW!!Our new line of Sydlets is finally online. It took me a while, but they are there. It is a marathon and half marathon line of jewelry. When Sydney was diagnosed with cancer 4 years and 9 months ago, Kevin started running marathons. He continues to run a few a year. The hard work and dedication it takes to run a marathon or half marathon is just amazing. That is 26.2 miles (or 13.1). It takes months of training to prepare for a run like that, and millions of people do it every year. Most people do it for a cause, like raising money for cancer or something like that. The people who run these races really inspire me. Sydney and I created a line of jewelry just for them. Please check it out on www.sydlets.com If you know any marathon or half marathon women runners, please let them know about the new Sydlets. It would also be a huge help to our family.Thanks for checking in on us. Please continue to pray for Sydney’s health and happiness, as well as all of the other children battling. On another note, please also pray for our church family, again, back in Brandon FL. (remember when our pastor died in a plane crash back in May), well, the Senior music pastor just died yesterday of a heart attack. He was an amazing man and singer. He prayed for Sydney all the time, and prayed with us on a few occasions. He will be greatly missed by all who knew him.I will update when the kids start school

Thursday, August 7, 2008 12:01 AM CDT

Hello,
WOW, a lot of time has passed since my last update. Sorry about that, but the truth is, nothing is going on. The old saying is true.... "Time flies when you are having fun"

Sydney is doing incredible. She looks and feels the best she has looked or felt in almost 5 years. She is having a great summer, just being a regular kid. She plays outside with her friends every day until dark. They are always running in and out of the house. I am finding myself loving the commotion. It has never been this way since she was diagnosed. I think she is really happy. She is out of the whelchair and crutches since last Thursday. We went for a follow up evaluation at the {ped ortho dr} here in Charlotte. He did reguler x-rays on her knee and leg, and said that he did not see any fractures. So, they are either healed, or they are only showing up on MRI scan. Anyway, he told her that it is ok to walk, so she jumped for joy, and has been nonstop ever since - with no pain. I am assuming we will do another mri, just to be safe, but so far, we do not have one scheduled.

We registered for school yesterday. I can't believe my kids are going into 7th grade. Sydney was diagnosed at age 7, and I never thought I would see the day that she went into 7th grade. She is in all honors classes, as is Drew, and I couldn't be more proud of my kids. They are just amazing.

Syd is still taking thalidomide and celebrex for meds. She will finish the 4th cycle in just over 2 weeks. Hopefully then, she will get to start a new treatment, but I guess we will just have to see what happens. School starts on August 21. The house is going to be quiet, and I will miss the kids terribly. I hope Sydney stays so well, so that I can actually go back out into the work force. It all seems so strange, to me.

I have had several emails about the Sydlets website. It has been down for a few weeks, but all is well now, and it is "up and running" again.

I am also working on updating this website, so please bare with me as I change photos and stuff like that.

Happy 27th Birthday (AGAIN)to the love of my life, Kevin. He is 27 for the 9th year in a row. (shhhhh, don't tell anyone). I love you, babe!!!!

Sydney is also having a birthday this month. She will be 12 on the 27th. WOW!!!! I am speechless.

Also, I am going to be an Aunt for the second time on Monday, the 11th. My sister is being induced then, and will bring her baby girl (Chloe)into this world. Congratulations Terri, I wish I could be there!!!!

Thanks for checking in on us, and I promise to update again sooner. I have to go and clean my house now. Our friends, The Monroes, are coming to visit for the weekend.

Michelle

Wednesday, July 23, 2008 7:54 AM CDT

Hello,

We finally heard back from the doctors in NY yesterday. Apparently, they have changed their minds about the 3f8, and not Sydney is not going to do it. At least not yet. They decided that she should do one more cycle of Thalidomide/Celebrex. So, we will begin the 4th month of that. Please pray that it will be enough to keep her stable for whatever is to come in August.

Her Urine results are in - well within normal limits.

Her leg is in no pain anymore since she has remained completely off it. She actually has a fractured knee and her tibia growth plate is fractured. I don't think I mentioned that on here before. She is just amazing. I can't believe she walked around for so long with those fractures. We are also so blessed that it was not her femur that broke. That would have been horrible for her, and would have given her active cancer an escape route out of that bone. She will remain on the crutches and wheelchair for about 4 more weeks. We will schedule another mri soon to recheck it.

Sydney is very happy about not returning to NY. She wants to make big plans for the remaining 4 weeks of summer. She is trying to plan other people's vacations to come visit her. She is so funny. My sister has been here since Sunday, and it was great to get to spend some time with her. We love it here, but we do miss being able to see the family whenever we want.

Thanks for checking in again. We are fine. Things are slow and steady in the NB treatment world, even though things didn't go as we had hoped. Maybe next month will be more aggressive. As for now, we will continue to be lazy, sleep in, hang out at the pool, and just enjoy the rest of summer.

Michelle

Wednesday, July 16, 2008 9:55 AM CDT

Hi there,

I am not trying to keep anyone in suspense, but I still do not have a date for Syd to start treatment. We are waiting like everyone else.

I will update as soon as I know something.

Other than that, things are good and pretty quiet.

HAPPY BIRTHDAY TO MY DAD (July 24th) We miss you!

********************************************************************************************************

Hello,

I am writing today because we have some news, and a treatment plan!!!!

The MIBG scan is still questionable to everyone. There is no clear answer to if the spot on her hip is disease or not. They are leaning towards not. There was mention of a spot in her right hip on the previous MIBG scan in May, however, it was said to be an artifact, not disease. Then, on the scan from last week, the spot is again noted, but this time saying that it is stable disease. The good news is that it does not show up on anything else, and if it is, in fact, disease, it is stable from 2 months ago, and not progressive. We still do not have results on Bone MArrows yet. Dr Modak does not seem overly concerned about the "new spot", but it will be monitored closely, obviously.

Now, for the new plan. Since Sydney is now HAMA Negative, they want her to do another round of 3f8 antibodies. Due to her history of HAMA, they think she will only get one cycle in, before getting another HAMA. Anyway, they are putting her back on the HIGH DOSE (10 x"s the regular dose) protocol that she was on back in November of last year. The theory is to get as much "bang for the buck". If you do not remember how Syd reacts to the 3f8, check out the old journals from Nov 12 - 16, 2007. It was completely miserable for her and everyone involved that week. Sydney is very unhappy about this plan. She said she would rather have chemo. That really says a lot when she would rather have chemo. We are not sure which week this will begin. Dr Modak said that he would call me back later today when he figures out the schedule. It would not be next week because she has to get 5 days of GM-CSF shots before starting. We are hoping it will be the week of the 28th, but I will have to get back to you on the date.

Until then, we will continue to enjoy the lazy days of summer. Syd is doing better on her crutches, although she is very sore under her arms. SHe alternates between the the wheel chair and the crutches to gat a break. She is having a hard time staying off her left leg. It is not in pain, so she forgets about the new 6 week rule of staying off it. I caught her using the crutches with the wrong leg down one day. She said she forgot which one was broken. It was pretty funny!!!

Thanks for checking in, and please pray for the upcoming treatments. I'll update again when I find out some dates.

Friday, July 11, 2008 6:33 PM CDT

Hello, The extremely LLOONNGG day from "you know where" is thankfully over!!!! We are just returning from the hospital and it's 7:30 pm. We did get lots of results and news today. Some good, and some not so good. I will just give you the play by play of the day as it happened.....

9:30 we went for the mibg scan. I was certain that I saw a new spot in her chest so I was pretty much freaking out. The left femur looked unchanged (to me). When it was over, we immediately went upstairs to the clinic and waited for bone marrows. As we were waiting, our NP came up to us and said we needed to go to xray for a closer look at something. My heart dropped, and I felt as though I couldn't breathe. I asked why, and her answer was "Sydney's knee is fractured". I was like, NO WAY, and she was like WAY!!! So we went for the xray and it confirmed that it is infact fractured in 2 places. Well, that explains all of the pain she has experienced for the past 3 months - since April. Then we had marrows done. That went fine. I spoke to Dr Modak about the MIBG scan, and my worries, he said the new spot was nothing, and that the scan looked good (stable). I felt better, but still concerned about her knee. They put in a consult appt for orthopedist. We then, went to MRI, waited an hour and a half, then had the hour long MRI of thorasic spine. We went back to our ortho appt. Apparently, the break is old. It happened in April when all of her knee pain was so severe. She did have an MRI of the knee in MAY, which only showed swelling and fluid. The dr believes that it was masking the break. They debated between casting her entire leg (hip to ankle), or doing nothing. We voted on no cast, but she has to stay off it for 6 weeks because every time she walks on it, it prevents it from healing - even if it feels better. We will get crutches when we get home, and she will also use her wheelchair. By that time, I asked for copies of all of her scan reports, and low and behold, the MIBG report was in. It said "stable disease in the left femur and right hip". Another shocker, because she has never had disease in the right hip. SO, Dr Modak will be looking into that to see what they are referring to, since he does not see it. So that scan is questionable. We also found out today that Syd is HAMA negative, and has been since May when they tested her. I am happy about this news, but also ticked that I was never told about it until now (when I asked about it). They will have the NB team meeting on Tuesday, and go over everything. I should get a call tues night with a new plan of attack on this disease. We are hoping it includes 3f8. We left the hospital, had dinner at the CHinese place and realized that we forgot to get Syd's port de-accessed. So we walked all the way back to the hospital, and got that done.

Now we are back at the RMD house getting everything cleaned up for our early departure. We have a car picking us up at 6:00am. I hope to fall asleep early tonite.

Thanks for checking in, and please pray that the questionable MIBG is nothing, and that her bone marrows and urine are all NED.

Michelle

Monday, July 7, 2008 3:02 PM CDT

Wednesday July 9

Syd and I are already in bed, and have been since around 8:00. It was a really long day today. We had to get up at 6:00 and did not make it back from the hospital until 4:00. Day one is over, and we are glad. MRI went smoothly, PET scan was another story. They were running late, so it started late, but then the machine broke in the middle of the scan. Sydney was sleeping, so they fixed the machine with her in it, and we re-started. After that, we got some lunch, and then waited for another hour to see the NP. We visite with her for an hour, but never saw a dr today. Syd had an upset stomach when we returned. She took her sski drops for the scan on Friday, and then proceeded to throw up. I think she vomitted up everything she ate all week. It was a lot!!! She did feel better after, but is starting to feel bad again.
That sums up our day. Thanks for checking in!!
******************************************************************************

TUESDAY JULY 8

Hi again, just a quickie:
We had a great day walking around Manhattan. We went to Build a bear workshop. Then Sydney spent all of her money at the AM Girl Store and decided she did not want the temptation of going into Bloomingdales, so we bypassed Bloomies today. We tried to eat at the famous "Serendipidy III" , but there was a huge wait (no reservations), so instead we went to California Pizza - just down the street.
We are back at the house now just chillin out. In a couple hours we will be on our way to the movie premiere. By the way, Brendan Frazier will be there - Hopefully, we will get to meet him and take a photo. I think he is the only celeb who will be there. It should be an exciting night.

Thats all for now - we will get up early tomorrow for the hospital. Please prayfor good results on the scans. This is such a scary time, and so stressful. Last summer (June)was when Syd had her last relapse behind her heart. She had a major surgery (Thoracotomy) followed by Radiation and chemo. I remember that she felt great before the scans, and we were totally shocked to learn that she had relapsed. You just never know whenthis beast is going to show it's ugly face again. Even though these kids look good on the outside, there is a war going on inside their bodies. We just have to believe that God will take care of us (Sydney)no matter what happens. She is strong - the strongest kid I know.

Until tomorrow, Michelle
******************************************************************************

MONDAY JULY 7

Hello again,

We made it safely to NY this morning. We totally rode in style on a corporate angel flight. Boy, have we been missing out these past 4 and a half years of flying back and forth to NY. It was so nice, and they treated us first class, all the way!! We will be flying home commercial, on Saturday, and I am already dreading it. Our flight was at 6:30 this morning, so we had to wake up at 4, get ready, and be at the hanger by 5:15. When we arrived here at the RMD house, we crashed and took a long nap. Today, we are just hanging out, being lazy, but tomorrow, we plan to go out and do some fun stuff in the city. Syd wants to go to the American Girl Store, Bloomingdales, Dylan’s Candy Bar, etc…. Then tomorrow night, we will be going to a pre-screening of the new movie “Journey to the Center of the Earth”. It should be a fun day.

Her scans start on Wednesday morning. Here is her schedule:

WED.
7:00am - check in hospital, access medi-port, have labs drawn
8:00am - MRI left knee
10:30am- PET scan Injection - wait one hour
11:30 - PET scan
ALL DAY - 24 hour Urine Collection
THURS.
Sleep in
1:00pm - MRI of Brain
2:30 - MIBG injection
FRI.
9:30am - MIBG scan
11:00 - Bone marrow biopsies and asp.
2:00pm - MRI Thorasic Spine
4:00 - consult with drs for any possible results
SAT -
8:45am - fly home

We are hoping to leave here with a tentative new plan of action. Her platelets are up to 100 now, so she should be able to qualify for some new clinical trials, although we do not know which ones will be best for her. I guess I can not speculate until I speak with her drs later in the week.

We had a really fun time with Kevin’s parents this past weekend. On Thursday, we went white water rafting. It was so much fun. We did have one incident where our boat tipped on one side, and my mother and father-n-law, and Kevin flew out of the raft and went down the class 4 rapids on their butts, backs, etc. Sydney fell out of the boat also (almost completely), but Kevin sacrificed himself to throw her back in the boat. My mom also fell on to Sydney, and was on her legs, so that kept her in the boat also. Our guide fell out of the boat too, but managed to get himself back in. I have some amazing pictures of it with the “play by play”. There was a photographer on the side who captured the whole incident. The pictures are hilarious, and we were/are all sore. But, we all decided that we want to do it again because it was all worth it. We went to the US National whitewater Olympic training center in North Charlotte. It really was a blast. Sydney is sore on her right side, where she was half in the water, and half in the boat, hanging out.
Friday, we went to see the movie, Hancock (very funny), then we came home and went swimming in the pool - with half of our neighborhood. It was fun. Then we went home and fired up the grill for a traditional July 4th BBQ, followed by 2 hours of fireworks in the cul-de-sac put on by the boys and men. Saturday, we hung out at the house during the day, and went to dinner that night. Sunday, we drove all over Charlotte and Fort Mill and looked at houses. Overall, we had a great long weekend.

Thanks for checking in, and I will keep you all posted every day on how things are going. We do not know anyone here this time. It feels weird to walk around and not see any familiar faces, at least not yet.

Until Tomorrow, Michelle

Monday, June 30, 2008 7:40 AM CDT

Hi There,

I am very sorry for the 2 week span in updates, there just has not been much to update. We are living pretty boring, normal lives - and enjoying every minute of it. We went to 2 doctor appts last week. One for Drew and one for Syd. Syd's counts are still really low (0.600 anc), but the good news is that her platelets finally made it to triple numbers!!!!! Her count came in at 105 - which is amazing for her. Unfortunately, it is still low for a normal person, and that is obvious by looking at her. She is covered with bruises. She has had so much fun playing in the pool, and outside with the neighbors. She stubbed her pinky toe on her bed, and there is a huge bruise all over it and up her foot. We thought it might be broken, but she is able to walk fine and can bend it, but the bruise lingers on - with all of the other ones al over her legs.

Drew's asthma appt went well, also. Thanks a lot for all of you who emailed me about Drs in the area. We decided on the Asthma and Allergy center in Charlotte with Dr Humphries and Dr Ashe. We were really happy with the clinic. Unfortunately, his lung function was only at 55 percent when we were there. You could never tell that by looking at him. He keeps up with everyone else with no problems, and does not ever complain that he is having trouble breathing. Hopefully, it will get much better, as he gets used to the new elements in the air, or we may have to make some adjustments in meds next month. Every time we move, we deal with this. We thank the Lord that he is such a trooper.

Sydney had her pentamadine infusion last week. It is a med that she gets once a month to keep her lungs healthy. At her clinic in Tampa, they only did the procedure through inhalation, and Sydney hated that. Here, she chose to have it done IV through her port. It took twice as long, but she could sleep through it, so it was better for her. The kids are thrilled that Sydney's hospital has a Chic-Fil-A in it. Every time we go, they beg to go get shakes or something like that for the ride home. They are so funny.

We are excited that Kevin's Mom, step Dad, and Brother are coming to visit us this weekend for the 4th. They will be here on Wednesday - next Monday. They are bringing our dog Nilla with them for the visit. It will be nice to see her for a few days. She will probably be thoroughly confused, but I think she will be happy to see us too.

I have been working hard on Sydlets. I have a new line coming out soon, of Marathon Jewelry (for runners). So stay tuned for that. The line will be launched at the Rock-N-Roll 1/2 marathon expo in Virginia beach in late August, but I will preview it online sometime next month. It is very exciting for us.

I think thats about all for now. Please continue to pray for good health for the kids. Sydney goes back to NY next week for another work up of scans. It is a scary time.Also, pray for the children who are suffering, and the parents who are suffering from losing a loved one.

Thanks for checking in, Michelle

Tuesday, June 17, 2008 8:32 AM CDT

Hi again,

things are going well. We are as busy as ever, still trying to get the house in order. The garbage pick up here, is only once a week.....and, they will only take 30 broken down boxes at a time. Well, we had over 300 boxes, so it is going to take a while for us to et rid of all the boxes. We are keeping about half of them (for the next move), but still, it is taking forever to get rid of all the boxes and paper.

Syd is feeling good, still. Her anc (immune system)is borderline neutrpenic (0.6), but her platelets are on the upward trend. They are finally up to 94. For a normal person, that is really low, but for Sydney, that is awesome. We canceled her trip to NY next week. Unfortunately, the Corporate Angel network will not fly siblings, so we had to cancel everything. Kevin will be out of town next week, I could not afford 3 plane tickets to NY, and I was not comfortable leaving Drew home alone. So, we have rescheduled for July 9, 10, 11th. Kevin will be home, so Drew can stay home and Syd and I will hopefully be able to get a Corporate Angel flight.

Father's day was nice. The kids woke up early and made Kevin waffles, french toast, and eggs. Then they went into the woods behind our house and cleared a path to the lake. Apparently, there is good fishing in the lake - if you can get to it. They were so cute, all dressed up in their cammo-gear, with their axes, rakes, and shears. After that, we went to the pool and played for a while. The day ended with us taking Kevin out for a delicious Mexican Dinner. It really was a good day. I did not get to spend it with my dad, but I did get to speak to him on the phone.

For all of our "friends" who are in the Charlotte area, I am looking for a good pediatric pulmonologist for Drew. I would love to have suggestions. If you have any, please email me personally - kasmic1@yahoo.com ... I have discovered that I am allergic to something awful here, but I do not know what it is. Every day, I look like I am crying all day. I have red, watery eyes, runny nose, and I can not breathe at night when I am lying down. I am having to take claritin avery day and benadryl every night. It must be all of the trees. I am not used to the wilderness.

Thanks for checking in, and I'll update again soon.

Wednesday, June 4, 2008 2:03 PM CDT

Quickly.... Sweet Marissa earned her angel wings this morning. She passed peacefully in the arms of her mamma, Tracy. Please continue the prayers. They need them. It is a very sad day

******************************************************************************
Hi again,

Things are going well. We are almost unpacked, but the house is functional and "up and running". We really like it here, even though we do not know a single person.

Syd is feeling better. She has been knee pain free for 3 days. It is just so strange how it comes and goes like that. She had her first dr appt yesterday. Dr Kaplan was really nice, and personable. We liked everything he had to say, and we are excited about a clinical trial that they may be opening soon. We expect to return to NY for repeat scans soon, maybe in the next 2 weeks.

We went to the community pool today. It is huge and really nice. We had a good time, except for that Drew has a possible ear infection, and it was hurting him a bit, so he was trying not to get his head wet.

Please continue the prayers for sweet Marissa Monroe and her family. It is just so unfair. I hate Neuroblastoma!!!

Thanks for checking in,
MIchelle

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Hi, We made it here to our new home. It is just as hot as in FL. I thought we might get a break from the heat, but no such luck. We are trying to get everything settled. Things are a mess, but slowly, we are making it a home.

I spoke too soon about SYd. Her knee pain is back and she IS now needing pain meds and today she needed her wheel chair. She is doing ok, though. I really think it is because she is not used to walking up stairs, and hopefully, her knee will get used to it and stop hurting. Anyway, she will go see her new Dr on Tuesday.

Please pray for our dear friends, the Monroes. They just got the news that no parent wants to hear. Their beautiful Daughter, Marissa, has progressed throughout her entire body. There are no more treatments available for her, and she was brought home on hospice care. We truly love this family, and Marissa. They need prayers for strength, and peace.

Thanks for checking in,
Michelle

******************************************************************************

Hello,

Things have been Go, GO, GO these past 2 weeks. to begin, Sydney is still feeling good. She is over the sinus thing she had, and nothing new has popped up since. She is having some re-occuring knee pain, but it is not as severe as it was before. I think she is just uncomfortable, but not in need of narcotics or a wheelchair.

We got packed up and loaded out this week. On Monday, the packers came and boxed up the whole house. It was miserably long and strange to have all of these strangers going through everything I own. To make things even more fun, our air conditioner quit working AGAIN!! It was 94 degrees outside, and 90 degrees inside. We all sweated like pigs all day. Then yesterday, the truck loaders/movers came and loaded the truck. The air was not repaired until 5:30 last evening, so it was another horribly uncomfortable day. The good news is that it is all fixed, and brand new for our new future buyers of the house. No, it has not been sold yet, but I am trying to be optimistic about the grim situation.

Tonight, we are going to my youngest sister's high school graduation. Way to Go Ashlee!! Then we are heading on the road at 5am for South Carolina. Yes, our house is in SC, right under the boarder of NC and SC. It's a small town called Fort Mill. We are so excited to get there. If you have ever been moved before, you know that there are certain things movers will not take on the truck like liquids, explosives, fire arms, etc..... Well, I am praying that we do not get pulled over on the way up to SC because my van is loaded with that type of stuff, along with all of Sydney's controlled medications. It's sort of scary thinking about that.

We are just so sad to have to say good bye to all of our friends and family. The good byes have been really hard, but I know that we will see everyone again. Most of the family lives here in FL, so we will be back to visit often.

We were unable to plan the annual Sydney Sims Family Fund Fundraiser this year. May/June is usually the time of year we have a fundraiser for Sydney's medical fund. With all of the things going on, I just did not get to even think about doing it, or asking anyone else to help out with one. My friend gave me the idea to have an online fundraiser. Im not sure how to do that, but if anyone is interested in participating or making a donation, the address is on this site to send donations to. We greatly appreciate the support that has been given to us over the past 4 and a half years that Sydney has been battling cancer. It has been a long, hard, expensive road to travel on, and we would not have made it without all of your support. We can't thank you all enough.

I guess my next update will be from our new home in SC. When we get everything all hooked up, I will be back in touch. Please pray for safe travels, health & healing, and for our house to sell!!!!

Thanks for checking in, Michelle

Tuesday, May 27, 2008 6:39 PM CDT

Hello,

Another week has just flown by. We have been pretty much going non stop, trying to get everything ready for the move. We spent the long weekend in Charlotte wih Kevin. It is just so pretty there. Lots of beautiful trees everywhere, and the weather was not as hot as here in Fl. We found a house to rent for our first year, and we move in on June 6. It was hard to make the drive back home. We just wanted to stay there with Kevin. We had a great time driving around, all over the area, checking everything out. We also went to see the new Indiana Jones movie.

Sydney finished School, officially, today. She was thrilled to not have to do anymore homework for a few months. Drew finished on June 4th. He got a math award today, for doing so well in that subject. He is really smart!!

We are having an open house this Thursday. Please pray that something good happens. So far, no bites on the house. In fact, it has not even been shown yet. There are just so many houses on the market, and not many buyers out there.

We wre sad to find out that we are unable to take our dog, Nilla with us to the rental house. She has been a part of our family for 10 years. Fortunately, Kevin's Mom is going to keep her and take great care of her for us. Hopefully soon, they will move to NC too, and we will be able to still see Nilla. We will miss her terribly, but know that she will be with people who love her too!!

We will spend the rest of the week getting everything organized for the movers, and making our rounds to say good-byes to our very large family. We had our last clinic appt this morning. It went well, but was hard to say good bye to the wonderful doctor and nurses who have taken care of Syd for the past 4 & 1/2 years. She has a case of sinusitus again, but we got some antibiotics to clear that up. She should be feeling better soon.

Thanks for checking in on us, and I might not be able to update for another week, but know that no news is good news. The movers are coming next week (Mon & Tues), then we will head back to NC on Thursday.

Until next time, MIchelle

Monday, May 19, 2008 12:45 AM CDT

Hello,

Things here have been very busy lately, and that is why I have not updated in a week. Sydney is doing well. She has been out of the wheelchair for almost a week. Her knee is feeling much better, with only slight discomfort, occasionally. She is no longer taking pain meds, and is back to her normal, happy self.

It has been an emotional week, with the pastor and his son dying in the plane crash. I have been to a few too many funerals of innocent children. It is just awful, and I hope to never have to attend any more. It was so hard to be at a funeral of a father and son. It was just so sad to look down in the front row of the church and see the grieving mom/widow and her other 5 children sitting there. I have never seen such a packed church. Our community has really stepped up and supported our grieving church family. Please continue to pray for Mrs Dawn Pollock and her children.

We are doing ok with Kevin gone. We sure do miss him a ton. We will be going to Charlotte this weekend for house hunting. We are really looking forward to seeing him for a few days. He is doing well with his new job, and likes it a lot.

We will be returning to NY in a month to re-scan. I think the doctors are just trying to be extra careful, and stay on top of everything. It worries me a little bit that they are a little worried, but I am trying hard to be positive, and believe that Sydney will be healed.

The theory that her legs are slightly uneven is seeming to be true because I noticed something that I have never noticed before. I looked at all of her shoes, and the left shoes look like they have hardly been worn, as the right shoes all look worn out, and have heavy footprints inside them. She is definately putting much more weight on her right leg. (supporting the theory that her left leg is shorter). We have no measurements yet, but I hope to get this issue resolved soon.

Please also pray that our house will sell soon. I have no idea how we are going to pay for this house and a rental house in Charlotte.

Thanks for checking in, and I'll update again soon.
Michelle

Monday, May 12, 2008 8:44 PM CDT

Prayer Request.....
Please pray for the family of sweet Emily Adamson. She went to Heaven last night after a 4 and a half year battle with Neuroblastoma. Her twin sister and parents need prayers.

Also, please pray for our church as our pastor Forrest Pollock and his 13 year old son died in a plane crash yesterday. He has a wife and five other children. What a tragedy.

Sometimes life just seems so unfair!

******************************************************************************

Hello,

Well, after going over lots of "what if's" and "why's" we have decided NOT to fly back up to NY for more radiation therapy. (at least not yet)

There are just too many questions that have gone unanswered, and may never be answered, but we are going to explore other options to figure out what may be causing Syd's knee pain before "jumping in" to another toxic treatment.

Possibilities: Deferred Pain - it is possible that the cancer in her femur and hip area is causing the pain in the knee - although strange because it has never been this intense and long lasting.

Possible Unsteady Gate - it is possible that she is experiencing the effects of the previous radiation therapy 3 & 1/2 years ago, and her legs are slightly uneven. She could be over compensating - causing the knee pain.

Possiblility # 3 - She has gained 8 lbs in the past 6 weeks, and the extra weight along with possibility 1 or 2 could be causing all of the pain in the knee.

The MRI did show that she had swollen joints, so there is something causing that.

Other issues: She has already had the femur radiated on two different occasions and it did not kill the cancer, it did not even improve it. She has had the max dose already, so any dose they may want to give her in the future will be much less than what she has had in the past, so chances are that it will not do anything to help the situation.

Our Dr here at home, spoke to our Dr in Ny today. The decision we are making is to consult with Physical Therapy and get the appropriate measurements of her legs, and see if they are the same length or not. She does need physical therapy because she walks with one foot turned way in, and has for a while. We are going to get moved to Charlotte and get settled. It is kind of a wait and see treatment plan (at least for now, unless something changes). Please pray that we are making the right decision. We will repeat the MRI's in a month or so.

Today, Sydney is having some stomach issues. I think she is a little dehydrated and she is drinking lots of fluids. Her knee is actually not hurting as bad today (off and on). She walked around the house today without complaining.

Thanks for checking in, and for the prayers. I'll update again very soon!!

Michelle

Friday, May 9, 2008 7:47 PM CDT

Hello,

We are back home. We arrived home safely yesterday afternoon.

The results:

MIBG scan - unchanged (stable)

CT scan - unchanged (stable)

MRI of Femur - Abnormal ( I expected that since she has cancer there)

MRI of Knee - normal

Urine - Normal

Bone Marrow Biopsies - No NB

Sounds great right????? Then I get the email today from Dr Kushner saying that he recommends radiation asap. We are so confused and do not know what to do.

The MRI of her leg was the first one that we have ever done. Since there is no previous MRI to compare this one too, he doesn't really know if that is what is causing her pain. That is the only thing he can think of since everything else is ok. It is just so strange that the knee is normal, and how could disease in the femur be causing pain in the knee???? The other issue is that the femur has already been radiated on two different occasions, and we were told that she was maxed out on radiation to that spot. I really hate to put her through radiation again.

On top of this dilemma, Kevin is leaving us tomorrow to start his new job in Charlotte. We will miss him terribly, and can't wait to join him in a few weeks. Please pray for us as we are faced with the challenges of the upcoming weeks. If Sydney and I have to turn around and fly back to NY in a week or so, things are going to be really tough!!!!

Thanks for checking in again, We really appreciate all of your support and prayers. We need it more than ever.

Michelle

Wednesday, May 7, 2008 4:58 PM CDT

Wednesday May 7

Another LONG day is finally over. We did not get back from the hospital tonight until 9:00. I am exhausted, and have a splitting headache from the MRI - it is pure torture!!! Sydney is happily making a flower arrangement with fresh flowers for me for mother's day (I think, because she won't let me see it).

This morning started with the MIBG. It went fine. No official report has been generated, but from what I saw during the scan, I am 99.9 certain that there is no cancer in her knee, and the rest of the scan looked pretty stable compared to the scan done in March. I feel pretty good about it even though I do not have the papers telling me it is ok. We did get a report of the ct scan, and it is stable with no new disease appreciated. After the scan, we went to breakfast, and then went to see the movie Nims Island. It was pretty good. We were alone in the theatre, which was pretty creepy. Syd got a bit of science homework done, and then we went back to the hospital.

Without all of the results, there really was not much to talk about with the dr. So, I guess we will have to do the rest of the consultation over the phone. Hopefully, the MRI will show what is wrong with her knee.

We are ready to get back home tomorrow. I miss my boys!!! Kevin is leaving for Charlotte on Saturday, so I will have 1 and a half days left with him for a while. Boo Hoo :(

Thanks for the prayers this week. I will update as soon as I get some results.

******************************************************************************

Tuesday, May 6

Today went well. So far, we have not had any issues or problems. CT scan was right on time. They only scanned her abdomin, chest this time. Im not sure why they did not do the head. Then she had Bone Marrows, which were also on time. She slept about 45 minutes after. I was getting kind of concerned because she usually wakes up from the anestesia pretty quickly. We decided not to go straight to lunch because she wanted to come back to the house for another nap ( well-deserved ).
She is sleeping off all of her meds now. We will head out of here around 1:00 and go to lunch at the taco joint we love so much, then go back to the hospital for MIBG injection.

Her MRI's are scheduled for 5:30 tomorrow night. First she will have her left femur done, then the left knee. Each mri should take an hour. It will be pure torture listening to those ear piercing beeps and sirens for 2 hours. Anyone who has had an mri before knows what I am talking about. They give us ear plugs, but it is still miserable. Sydney typically freaks out during mri's, so I will have her feeling good and relaxed with a healthy dose of ativan before the scan begins. I will make sure I get all of the latest gossip magazines to pass the time for me.

Her MIBG scan is at 8:00am tomorrow. That is the scan that specifically picks up the NB cells. It's the scan that all of us parents have nightmares about, and anxiety for weeks before. If her left knee lights up, we know that the pain is from the cancer. If it does not, then we know that she has joint damage - then, hopefully it will show up on the MRI and we can see if it can be corrected.

Thanks again for checking in on us.
******************************************************************************

MONDAY MAY 5

Hello,
We made it to NY safely today. Our flight landed at 2:15, we rushed to get a cab, sat in traffic, made it to the RMD house, checked in, and were on time for our 4:00 appointment at the hospital. I couldn't believe we made it, but we did. We spent about an hour there, which was great time also. Normally, it takes at least that llong to be called back. 4:00 is a great time to go. Anyway, Sydney got her port accessed, and blood drawn. (her ANC is back down to 0.6, but good news is that her platelets are up to 90. They were only 60 on Thursday, so something doesn't seem right, but we are liking that #, se we'll take it!! We went back to see our favorite NP, Linda, and Syd got her CT contrast, SSKI drops, and Urine collection stuff. We are now back at the house relaxing in the room. There is a Cinco de Mayo party in a little while. We are looking forward to some good Mexican food.

Tomorrow, Syd has a CT scan at 8:00. Then, she has her Bone Marrows at 10:45. After that, she can eat, then we have her MIBG injection at 2:30.

Wednesday, she has her MIBG scan at 8:00am, and they are going to throw in an MRI of her left leg at some point on Wednesday. It has not been scheduled yet. Sometime Wed afternoon, we will consult with the doctors about any results they have.

Thursday, we will be flying home at 1:30. We made an afternoon flight just incase the drs wanted to add any more tests.

Thanks for checking in, and please continue to pray that all of this knee/leg pain is not cancer. And also, that we can find out exactly what is causing the pain and correct it!!!

It saddens me to report that 3 beautiful children lost their lives this past weekend. It was a rough weekend in the world of pediatric cancer. Pray for Cooper Proscia's family, Courtney Saunders family, and Sierra Kessler's family. Such a tradegy!! I do not know what else to say. I just feel numb inside. WE NEED A CURE!!!!!

Michelle

Thursday, May 1, 2008 1:47 PM CDT

Hello,

Syd had a cbc today in clinic, and things are pretty stable. Her counts did drop a smidge, but nothing remarkable.

I usually send an update to her Dr in NY about twice a month on how she is doing and what her counts are. I feel like "out of site, out of mind" is the motto in NY sometimes, and I just don't want to let that happen. Anyway, when I mentioned all of her knee pain lately, Dr Kushner got pretty concerned. I got a phone call last night, and they want us in NY next week to scan and test. She just had scans in March, and she is not "due" for them until mid-June. They are having us return 6 weeks early. I am thinking that the pain in the knees is from the damage the accutane did to her joints, because she has suffered like this for years. I hope that it is an over-reaction, and the scans will be just fine. But, if there is some disease progression in her leg, we need to know now. If we waited until June, it could be too late. This disease is a monster, and I pray that her pain is just those nasty side effects of treatment, and not disease. Please pray for good scans!!!

We fly out on Monday and plan to return on Thursday. Syd got her own wheelchair today. Hopefully, she will not need to use it very much, but I hate seeing her suffer to walk when she is hurting. We will just keep it in the car, and if she needs it, it;s there. It will come in handy on this trip to NY!!

Thanks for checking in, and I will update again soon,
Michelle

Monday, April 28, 2008 11:55 AM CDT

Hello, We had another very nice weekend. The weather, here in Fl, has just been gorgeous the past few weeks. If you have seen Drew today, you probably think I am the worst mom in the world, as he is completely bruised and sun burned. Poor baby, I feel so bad for him. I learned 2 very valuable lessons this weekend, and I hope he did too. The first,..... Dress your child like the Michilan Man before going out for a day of paint ball war games. He had on Jeans and a hoodie sweat shirt, and a helmet, but clearly, it wasn't enough. The boy has about 15 huge bruises all over his back and arms. The scary thing is that he had a blast, and can't wait to go back and do it again. Boys will be boys, I guess. The second rule is...... Don't let your 12 year old son put on his own sun block. He did a horrible job. I put on the first application, but when it was time to re-apply, he took care of himself. (big mistake) I think he forgot over half of his body. I know he learned that lesson, because he is hurting today.

We had a wonderful day at the beach yesterday. The weather was beautiful and not too hot. The water was not too cold, and everybody got along. There were dolphins, and the kids dug a big hole in the sand, filled it with water, then caught mini puffer fish to put in the hole. They must have caught 15 fish. They were all about 1/2 inch big, and when they puffed out their bodies, they looked like pearls swimming in the water. It was a lot of fun. Sydney did not get sun burned at all. She also put on her own sun block thoroughly. She's very responsible. She is still having a very difficult time walking due to the pain in her knees. We have had to pull out the "big guns" and give her dilaudid for the pain. I keep thinking it will get better, but she has been so active lately, that it just keeps getting worse. I am going to seriously look into getting her a wheelchair for when she has these episodes with her knees. Other than the knee pain, she feels great. I think she got a little dehydrated yesterday, but today she is drinking lots.

Thanks for checking in today,
Michelle

Friday, April 25, 2008 11:42 AM CDT

Hello,

First, I must say thank you to all of the wonderful people in che Charlotte area who are reaching out to us. All of the guestbook entries are warming my heart, and even though we do not know anyone in the area personally, I am suddenly feeling not so alone anymore. I know it will be a wonderful move for our family, and I hope we get the chance to meet all of you someday. I have received many, many emails too, and I plan to respond to them all soon. It's a bit overwhelming.

Kevin will be leaving next weekend, and we wil follow as soon as the kids finish school. The kids are very excited about the move, but it is bittersweet, as we will miss so many people from the Tampa area. Most of our family lives here, so we will have many opportunities to visit.

Sydney had a clinic appt today, and everything is moving in the right direction. Anc is 700 (very low, but up a smidge from Monday), Platelets are holding at 63, and hemoglobin is actually in the normal range at 12 (low end of normal, but still normal - first time in 4 years). She is feeling good. Her first round of thalidomide/celebrex ended yesterday, and round 2 starts today. No break in between cycles. She still sleeps a lot and eats a lot. She has gained 7 pounds the first cycle (4 weeks).

This weekend, Sydney is craft show shopping with her grandma, Drew is paint-balling, and Kevin and I will be suit shopping on Saturday. Sunday, we plan to do something fun together since it will be our last weekend to spend as a family. We have not decided what we will do yet. The weather will be nice - mid 80's - so it shouldn't be too hard to make a plan.

Infortunately, another child lost his battle to NB this week. Please pray for the Melgar's as they grieve the loss of their 7 year old son Austin. I hate this disease!!

As always, please continue to pray for the cure and all of the children fighting the battle.

Thanks for checking in,
Michelle

Wednesday, April 23, 2008 10:41 AM CDT

Hello,
Today is a good day!! No, today is an amazingly Awesome day!!! We feel like a huge 500 lb weight has just been lifted off our shoulders.

For the past month, the stress of knowing that Kevin will be unemployed on May 1st has been weighing on our family. It is a very scary feeling, and one that I hope to never have to deal with again. It was harder than when we went from two incomes to one income 4 years ago. That was difficult, but then voluntarily giving up that only income we had, was much worse, and we had the overwhelming feeling of guilt to go with it. You see, Kevin's time in the military is up on May 1st, and he had the huge decision of re-enlisting for 5 more years, or getting out. His choice was to get out (for many reasons that I do not need to get into). However, with the economy as bad as it is right now, finding a replacement job has proven to be almost impossible - until last week. Last Monday, Kevin did not have any job offers, and the scariness of him being unemployed (with a kid who has cancer) was getting the best of us. He went into work, ready to sign his papers to stay in the air force for 5 more years, however, her was only doing it because he felt like he had to, not because he wanted to. Anyway, 2 hours before his appt, the phone rang, and it was a company called General Dynamics - wanting an interview. We took that as a sign from God to not sign the papers to re-enlist. (by the way, that day was his deadline to re-enlist, and there was no changing his mind). So, we decided to risk everything for this one job interview (his dream job that we had been praying for, for weeks). To make a very long story shorter, he was offered the job this morning...... PRAISE GOD!!!!!!! Our Prayers have been answered. It is a great job, and it is in Charlotte, North Carolina. We will be relocating as soon as the kids finish school in June. We are just so excited about this wonderful opportunity for Kevin, as well as a much needed change in our lives. Now, we still have a house to sell, but that will happen eventually.

Thank you everyone for praying for us. It really has been a rough month, and because of the wonderful power of prayer, things are working out for us. If there is anyone reading this who lives in the Charlotte area, let me know.

Syd is feeling pretty good. We will go back to clinic on Friday, and I will update again then.

Michelle

Monday, April 21, 2008 2:17 PM CDT

Hello,

We had a wonderful weekend. We went to a pool party on Saturday, then had a party at our house on Saturday night with all of the people from Kevin's office (sort of a going away party), then on Sunday we went to the beach. It really was a nice weekend, and Syd had a blast. She played hard all weekend, but she is paying for it today. Her joints in her knees are really hurting, and she is limping pretty bad. This is due to the permanent damage that was done from the Accutane. She will feel better in a day or so with rest.

She had her monthly pentamadine breathing treatment today in clinic as well as a cbc. Her platelets and red blood cells are up a bit from Friday (still low), but her ANC (immune system) is really low. She is borderline neutropenic, meaning that she is at high risk for infections * 0.6 * that's not good. We are not sure why, but it is Sydney afterall, and she is always a mystery. We will go back on Friday for another check of the counts, and if it continues to drop, she will need to go back on GCSF shots. Lets hope that doesn't happen because those are NO FUN!!!!

I do not have an update yet on Kevin's interview other than it went well. Lets hope an offer comes in soon!!

Thanks for checking in and please continue to pray for our friends who aren't doing well, and for the kids who are - to stay doing well. And as always, for our cure!!

Michelle

Thursday, April 17, 2008 4:20 PM CDT

Thursday, April 17

I just wanted to say thank you to all of the wonderful people who have reached out to us this week. We are feeling a sense of peace already this week. It must be from all of the prayers. Nothing has changed since Monday, but I am able to breathe a little easier, and feel a little calmer. Thank you.

Syd is feeling much better. Her UTI symptoms are much milder since she started the antibiotics on Monday. We are going to hit the beach again this weekend on Sunday, and have a pool party to go to in Saturday. It should be another nice weekend.

Kevin has a huge job interview on Monday morning. Please pray extra hard that it is successful. It is a good job, and we need this more than you know!!!!

Please also pray for a very special boy, Cooper Proscia. He has been an amazing NB fighter and has just been placed on Hospice care. Damn this disease!!!!! It just makes me so sick!!

Until next time......
******************************************************************************
Monday April 14

Hello again,

It's hard to get back into the routine after such a fun & relaxing week. Sydney had a really hard time waking up this morning for her 8:30 math class, as did we all. That's the hard thing about vacations....... eventually, they come to an end.
We went to the beach a couple times, we had some other fun girls days, and she had many sleep-overs with friends and cousins. The boys had a great time camping and roughing it for 3 days.

Yesterday, Syd woke up in lots of pain in her abdomin, and was experiencing the symptoms of another UTI. We went to clinic today and she started a stronger antibiotic for the next 10 days. She also got 2 and a half hours of fluids to help her start to flush it out. She was having the urges to go, but could not go, and it was very painful for her. The fluids helped a lot and hopefully, she is on her way to a full recovery (this time). Her blood counts are mostly stable, except for those darn platelets. They are dropping again and are down to 43. No one can figure out why.

My family has been under a HUGE amount of stress lately dealing with a few situations that are just incredibly difficult to handle. Someday, I will explain, but for now, I am just asking for prayers for the Sims family. Please pray that everything will work out, and be ok. Sometimes, I feel so overwhelmed and do not know what to do. There is a huge pit in my stomach and the "pot is boiling over and over". I am praying that God will share with us, this plan he has sooner, rather than later because I do not know how much longer I can last before I am totally insane from the stress. I am not trying to be suspenseful, but for now, it is too personal to share with the world.

We have several friends who also need prayers. Unfortunately, there is another "wave" of bad news in the NB community. Many progressions are happening, relapses, and a few miracles are needed. You can go the Loneliest Road website and see all of the websites of the kids who are battling and pray for them.....
Marissa Monroe
Nick Franca
Austin Melgar
Emily Adamson
Jessie Keubler
and so many more you can read about.

Thanks for checking in, and I will update again soon!

Michelle

Monday, April 7, 2008 6:31 PM CDT

Hello,

Spring break is finally here, and the kids and I are just so happy to be able to sleep in for a change.

Today started out with us going to clinic. An hour later, we ended up with another emergency MRI to rule out progression of disease in her hand. I know, there is always something going on with this poor girl........Go back a week...... Last Tuesday, Sydney woke up with a painful, hard lump in her hand that was bothering her. It just showed up over night - out of know where right on her palm next to her index finger. We went to clinic and had it x-rayed. Nothing showed up, so we decided to wait a week, and if it was still there (today), we would make a decision for further testing.......which brings us back to the MRI today. It obviously was still there today, and it was slightly bigger than last week, and was causing her some discomfort. The MRI showed a cyst. They tell me that it is benign, and is not cancer - just a cyst and not to worry. So we will not worry about it.

She is doing well on her thalidomide and celebrex. She sleeps a lot, and sometimes I get a little scared at her swollen face in the mornings, but luckily, it always goes down after she eats breakfast (or lunch if she wakes up after noon).

We plan on doing some fun things this week like going to the beach, and having a girls spa day. The boys are going camping for a couple days, so the house should be pretty quiet.

Thanks for checking in again, and I'll update soon with fun spring break pics.

Michelle

Wednesday, April 2, 2008 11:53 AM CDT

Hello again,

Sorry for the delay in updates, but there just hasn't been much to report.

Sydney is feeling great!! Her appetite is better than ever, and she actually gained 4 and a half pounds since last week. She is eating like a champ!!!

She started the Thalidomide and Celebrex last Friday. So far, she is doing well with it. I wasn't sure after the first night as I couldn't get her to wake up the next day, then when she finally woke up, her entire body was numb, and her tongue was swollen. I was a little freaked out by it, but each day has been better since. She is still sleeping a lot with it, but it is a normal side effect. And each morning, she has a slightly swollen upper lip, but it goes down quickly after she is up and eats. I think the first night was just a shocker to her body.

Her headaches are few and far between. She had one today, but it has been like a week since the last one. Over all, she is doing quite well (I think)!!

On the homefront, Kevin is still on the job search, and and the house is officially For Sale.

Please continue to pray for all of the kids who are battling this horrible disease. So many of our fiends are doing very poorly and need miracles right now.

Until next time, Michelle

Thursday, March 27, 2008 8:47 AM CDT

Hello again,

We heard from the doctor Tuesday night, as expected. The treatment decision for Sydney was also as expected - thalidomide and celebrex for 3 months. So, we will enjoy the next 3 months at home as this is a pretty mild treatment. The side effects are extreme sleepiness, and neuropathy. There are also many "rare side effects" which we are hoping we will not see any of. When she was on these drugs a couple years ago, she did not experience any of them, but it seems that the older she gets, the more of a toll the treatments take on her. I guess only time will tell...... Please pray that these drugs keep her disease stable - as that is all we can expect from them. There is no expectation that the disease will improve, however, miracles can happen, and we do believe that. We just mainly pray for no progression, and in 3 months, when we return for scans, we are hoping more treatment options will be available for her as her blood counts get higher, and maybe even her HAMA will go away.

GOOD NEWS!!!!! Her bone marrows are still negative!!!! That is 3 years of negative bone marrow. We are very happy about that!!

Syd is fighting a UTI right now and is taking antibiotics for that. We are having difficultly getting the thalidomide this time, as it is so controlled, but as soon as a pharmacy can get it for us, she will begin taking it.

Thanks for checking in on us again, we sooooo appreciate the support and prayers from each of you.

Michelle

Tuesday, March 25, 2008 7:59 AM CDT

Hello. I hope everyone had a nice Easter. We had a good day. It started with an Easter scavenger hunt (sort of). The kids wanted me to leave them clues all over the house and hide all of the Easter goodies. So it took me a few hours to do it the night before, but it ended up being really fun for all of us. Then we went to church, and then to my Aunt's house for a big Easter dinner and the traditional egg hunt with all of the kids in the family.

After having some time since getting Sydney's scan results, things have really begun to sink in for us. Don't get me wrong, we are very, very happy that the disease has not progressed (which is what we were afraid of), but the fact remains that she still has the same active cancer in her leg that she has had for over 4 years now, and it is resistant to ALL TREATMENT!!!!!! It is very scary, and as we have seen with so many, many children in the past, it can just all of a sudden, decide to "take off, and take over". The other depressing fact is that we do not have any proven treatment options. When going over the list of possible treatments with our Dr in NY, the first few things he mentioned for us are not even being done at Sloan Kettering hospital, they are in all sorts of different states. He also said that none of the treatments mentioned, had any success rates in improving disease, only keeping it stable, or nothing at all. He never said this, but it sort of gives us a feeling like they have nothing left for us. After discussing things further, we told the Dr that we do not want to go anywhere else for a treatment if it isn't showing improvements in the disease...... Our options at Sloan are the ones I mentioned in the last entry. Thalidomide/Celebrex (TC), or a new antibody with a different team of Drs. We have done the TC before, I think in 2005. Sydney took that combo for about 9 months, and it did keep her stable. I am assuming that is what they will decide for her to do again, but they may surprise us with the antibody, if Syd even qualifies for it - due to platelets. Either way, our best option is to keep the diesase stable. It is just unfair to Sydney that she doesn't have the option of finishing treatment, like so many other patients with other cancers. People ask us in the clinic, "How long is her treatment?" The answer, "Until the cure is found, or the cancer takes her life." I hate this for her, and all of the children who are fighting this battle.

So, for now, we will continue to live each day to it's fullest. Try to have a good time and lots of fun with the kids, because we never know what
tomorrow, next week, next month will bring. We will continue to pray that a new and wonderful treatment will be discovered sooner than later.

We should hear from the DR tonight letting us know which treatment they feel is best for Sydney at this time. They have their big meeting today where they discuss all of the NB patients and make the decisions. I will update with the decision later.

Sydney is doing ok right now. I think she is getting a bladder infection, as she is all of the symptoms. She goes to clinic tomorrow, and will probably be put on antibiotics. Her headaches are milder, and less frequent these days. We are really happy about that, and so is she. They were really making her miserable.

Thanks for checking in on us, and for all of the prayers.

Michelle

Thursday, March 20, 2008 5:12 PM CDT

HELLO,

PRAISES, PRAISES, PRAISES!!!!!!

Thank you Lord, Prayer Warriors, and friends and family.

Sydney's scan results are AWESOME!!!!!!

We got all of her results back today except for the Bone Marrow biopsies.
MRI (thorasic spine) - CLEAN!!!!
CT (head, orbits, chest abdomin, pelvis) - CLEAN
PET scan - Left femur positive for activity
MIBG scan - Left Femur positive
Urine - all within normal limits

So, basically, things are great. The same spot in the femur is the same - stable disease in the femur with no change. The rest of the body seems to be free of NB. Hopefully, the bone marrows will confirm these results.

SO, what's next???? We do not know....... The team will discuss the possibilities on Tuesday at their team meeting and get back to us then. What we do know is that the femur spot is active cancer and can not go untreated, but at the same time, can not have mouse antibodies, chemotherapy, or accutane. Our options consist of a combo of drugs called Thalidomide and celebrex. OR a new antibody therapy under a different team of doctors for solid tumors. We are not sure which one to do, but if we go with the antibody therapy, we will be the first NB patient to do it. There is a platelet requirement for it that we do not meet yet, so we may have to wait on it. I guess we will just have to wait until next week to decide which our docs thinks is best. We are up for either therapy, and are ready to get started.

The headaches continue for Syd, but thank God it is not cancer related. We will have a neurology consult if they continue for Migraine meds.

Thanks for checking in and praying so hard for us this week. We are really happy with the results and can breathe easier for a while. There are so many other children who need the prayers to continue.

We will fly home tomorrow and concentrate on selling our house and makin some positive changes for the future!!

Love, Michelle

Wednesday, March 19, 2008 7:18 PM CDT

Hi, We are finally finished with all of the scans, biopsies, and other tests. unfortunately, we do not have any results yet, other than she is still HAMA positive. That just means that anything having to do with Mouse antibodies is out of the question for possible treatments. We pretty-much already knew that. We are very anxious to find out the results of everything. I tried to get some today, but the computer was down, and our nurse couldn't pull anything up. We have an appointment tomorrow for Sydney's Pentamadine treatment, and we will not leave the hospital until we have some answers. She is pretty sore today from the bone marrows but dilaudid is taking care of it as well as heat packs. We have not seen a doctor on this trip at all for a consult. We passed Dr Kushner in the hall and he said Syd looks great and thinks her headaches are Migraines. We also saw Dr Kramer today quickly before she pulled Syd's marrow, and she was pretty quiet. It was rainy and cold today, so we just hung out at the hospital and in our room all day.
That's all for now. Hopefully, tomorrow afternoon I will have great news to report. We will be flying home Friday (YEAH!!!!)

********************************************************************************************************

Monday March 17
Hello,

PET scan went well today. It was Monday, therefore everything took twice as long as normal, but we made it through without any major problems. We have no results yet. We will most likely not get any results from any of the scans until late Wednesday or Thursday.

We went to the St Baldrick's event in Central Park this afternoon. Lots of people shaved their heads and raised lots of money. Even 2 women shaved their heads. Sydney got to shave one of the men's heads. She did not like it at all. I had to bribe her to do it. It was pretty loud there, and after about an hour, she started to get one of her headaches. So... we left and came back to the house where they were serving shepards pie and corn beef & cabbage for the holiday. It was all pretty good.

A very special thank you to my good friend Kristi and her family. We were surprised with a huge bouquet of chocolate covered fruits from her today. It was delicious, and will probably take us all week to eat it.

Thanks for checking in.... Tomorrow will be a big day with MIBG injection, CT scans of head, orbits, chest, abdomin, & pelvis, and MRI of thorasic spine.
Please continue the prayers

Michelle

Saturday, March 15, 2008 7:44 AM CDT

Sunday,

We made it safely to NY. It is really cold still here with only highs in the lower forty's. It's kind of a nice change from the 80 degree weather at home.

I am happy to report that Sydney did not have any head aches today at all (so far). And, yesterday, they were milder. I am hoping that this trend will continue.

I will update tomorrow after we have her first scan and see the drs. We will also be going to a St Baldricks event in the city tomorrow afternoon. That is where people raise a bunch of money to shave their heads for pediatric cancer research. Each year they raise millions of dollars. It's a great organization.

******************************************************************************

Hello

Well, we have had a pretty hard week with Sydney. The fashion show was pretty much the only fun/good time she had. The headaches have been horrible all week, accompanied by nausea/vomiting and some dizziness. Wednesday night was the worst, as she was curled up in a ball crying because her head was pounding so hard. She also has had some low grade fevers along with this. We have been giving her codine for the pain. In the past, we attributed the headaches to the Accutane, however, they would go away when the accutane stopped. She has been off the accutane for 2 weeks, and the headaches are worse, not better. I decided to look up the side effects in the accutane hand book and I discovered the "rare side effects" section.
POSSIBLE BRAIN SWELLING (severe headaches, nausea/vonitting, dizziness)
I emailed Dr Kushner in NY and explained everything going on to him, and he immediately ordered an emergency MRI from Dr Kerr, here in Tampa. So that is what we did yesterday.
We did get the results last night, and they were inconclusive as to why Sydney is having such horrible headaches. There is no noticeable brain swelling, no sinus infection, no new tumors?????? So we are unsure of what is going on. There is a spot on her skull that appears to be weakened marrow (not really sure what that means, but it was on the mri from 2 years ago also). She said we should further investigate with other scans/tests for better answers, as MRI is not the best way to detect neuroblastoma. I am really praying that there is no NB in her brain because the only sucessful treatment for that is a mouse antibody called H89, and with her being HAMA positive, she could not get the treatment.
I am asking that everyone please pray for Sydney and her scans to not be progressive, and that we will find out the reason for all of her pain (not being cancer). Times are so hard right now in all areas of our life. I really feel like our faith is being tested. I do have HOPE and FAITH that everything will eventually work out, and I know it is Gods plan, not ours, but it is just so hard.

Thanks for checking in..we fly out early in the morning for NY, and I will update as things happen. PET scan is Monday, MRI and CT are Tuesday, MIBG scan and bone marrows are Wednesday.

Michelle

Wednesday, March 12, 2008 12:01 AM CDT

Hello,
Last night, was the Fashion Funds the Cure Fashion show, and it was amazing, as always. Sydney, and all of the 32 girls lookes as beautiful as ever. I was so proud of her last night because she did not feel well. She started off the day vomitting and had a migraine headache (which she gets frequently). She even has one now. She felt much better after a long nap and lots of good meds. There were over 500 people at the fashion show, and the last count of the money raised was $300,000.00. INCREDIBLE!!!!
Her escort for the night was Tampa Bay Bucs Defensive Lineman, Chris Hovan. Apparently, he's pretty tough on the field, but a teddy bear around Sydney. It was a great night. Thank you to all of our family and friends who came out. I hope you all had as good of a time as we did!!

We are still trying to fix up the house. It is looking really nice, and we hope to have it on the market in a week or so. That's exciting!! Kevin is still doing the job search. He is seperating from the Air Force on May 1, and is sending out tons of resumes. Please pray that the right job comes along, and that everything works out for us as we are hoping. I'm pretty sure that our stress levels are maxed out right now. So, if you know anyone who needs a house, or who is looking for an awesome employee, send them our way.

Thanks again for checking in. I will update again soon. She has a clinic appt on Friday, as well as another dermatology appt. Then we fly to NY on Sunday morning. Pray, Pray, Pray!!!

Love, Michelle

Sunday, March 9, 2008 4:56 PM CDT

I have been trying and trying to update this site for days, but could not. Every time I signed in, it told me that I was using the wrong password (the same password I have been using for 4 years) ...I don't think I forgot it. Just now, all of a sudden, it finally worked for me. I was starting to think I was losing my mind.

Good news on Sydney's blood counts. Tey are finally starting to rebound. Her platelets were actually in the 50's this week. We did the platelet dance!!!! I took Sydney into the clinic 3 times last week, because I was really worried about her, and her complete lack of energy. She was literally sleeping over 15 hours a day. She was just so tired and did not want to do anything. We were really worrying about her, and I thoughtthat she probably needed a red blood transfusion. but each blood test confirmed that she didn't need one. I just couldn't understand why she was acting that way. She has also been complaining about her left arm hurting. It is starting to hurt almost every day. That scares us too. She has been a little perkier this weekend, and is having some fun. Hopefully, she will have a better week tis week,because she has the FCAT tests Tues - Friday.

I have been asked recently how much treatment Syd has had over the past 4 years, and how could her marrow be so tired from it. So I started going back and I actually couldn't believe it myself, the amount of treatment she has had.....
25 cycles of chemotherapy
57 radiation treatments
11 cycles of accutane
2 1/2 rounds of 3f8 (gmcsf)
2 1/2 rounds of 3f8 (beta glucan)
1/2 round of 3f8 (high dose)

That is a ton of treatment. She was on accutane when she relapsed in April 2005....She was on accutane when she relapsed in June 2007.....She is on accutane now, and acting strange and complaining of pain.....

Please pray for Sydney. We are extremely nervous about her scans coming up. I think she is too.This is a very scary time in our lives. Over the past month, 3 brave children from the Band of Parents lost their battles, and there are a few more who are doing so poorly. I feel like an actress most of the time because I walk around, socialize, and interact with people every day who have no idea what a wreck I am inside. Sometimes I am so quiet around people and it is not because I do not want to talk, it is because I am afraid I will break down and the wrong words will come out of my mouth, and I will just cry. Most people can not handle that, or they would think I am a crazy person. I try to be strong for Sydney, but the truth is, I m so weak. She is the strong one, fighing everyday to stay alive. She is a pre-teen, she understands what is going on. She sees other people die all the time. She could throw in the towel, but she won't. She wants to live and grow up and be a dolphin trainer. I am so incredibly lucky to have been blessed to be her Mom. She was truly a Gift.

Next Sunday, one week from today we will be on a plane to NY for a tough week of tests, scans, and biopsies. We need strength and guidance and lots of prayers for Sydney's body. Pray for her body to be healed and rid of all cancer. Also pray that her doctors will hve a plan in mind for her treatment. She will start the next round of accutane on Friday.

Fashion show is Tuesday. Syd is really excited about it. There are still tickets available for anyone who would like to go. Thy will be sold at the door

Thanks for checking in,
Michelle

Wednesday, February 27, 2008 6:54 PM CST

Saturday, March 1

yesterday, when Syd's blood counts were drawn, we were not pleased with the results. Unfortunately, they dropped down again. I am seeing a trend here that she is low on Fridays, and higher on Mondays. Anyway, she did not get any transfusions, although she could have used a RBC transfusion to give her a little bit more energy for the weekend. She is sleeping soooo much lately, just always feeling exhausted. I really don't know what to write anymore, as we do not have any answers. We will go back to clinic on Monday to recheck and transfuse if needed.

Today, Syd is going to a special VIP party to meet the actress, Britany Snow, from the movie Hairspray. She is very excited, and I will take pics.

Thanks for checking in again, and please continue to pray for her counts to come back up. Yesterday was her last day of accutane, so she will have a 2 week break!!!!YEAH!!! she is thrilled, and so am I. We will return to NY on March 16th and see if we can figure out what is going on with her.

********************************************************************************************************

hello,

Let me say thanks for the prayers!!! They worked!! On Monday when we had Sydney's cbc, the counts were up (slighly). She is not neutropenic anymore (barely)- up to 0.7 Her hemoglobin jumped up the most to 10.4, and unfortunately, her platelets did the least, but they did stretch their way up to 30. She is still sooooooo far from where she should be, but hopefully the upward trend will continue, and Friday I will have a good report to give.

Syd pretty much slept all day after she had 2 morning classes. The accutane makes her so itchy, then the benadryl makes her sleep. She's up now and ready to watch Am Idol.

We will go to the dermatology appt on Friday morning for another scraping and cryosurgery, then head over to her oncology appt for a cbc.

The pampering day was lots of fun. Syd picked out a great outfit to wear with amazing accessories. She had a great day getting her make up and nails done. She got an awesome goodie bag filled with all sorts of girly things including a green ipod and a diamond necklace!! Thank you PCF for making it a special day for us!!!!

please continue the prayers!!

Thanks, Michelle

Sunday, February 24, 2008 6:05 PM CST

Sunday, February 24

Hello again, I have added the invitation for the fashion show to the site, as you can see. I misquoted the price in my last entry, as I stated it was $50...."My Bad, I'm sorry about that" I fixed it, as though it was never there.

Anyway, we had another long weekend. Kevin continued to paint ceilings, and I planted bushes, trees, and flowers. Then he helped me, and my mom did too. It was a big job, and 33 bags of red mulch later, we are still not finished. We still need about 15 more to finish the job. It really is a different feeling when you do all of the work yourself, compared to when you hire someone else to do it. Don't get me wrong, if we had the extra money, we would have hired someone in a heartbeat, but we are kind of proud of the great job we did on the house. I wish we would have done it much sooner.

On to Syd.... we had a shocker on Friday when we went in for a cbc. e thought the appt would be quick with Sydney getting her port accessed for blood count check, a comprehensive panel of blood checked to see how the accutane is affecting her liver, lipids, and other junk like that, and for her pentamadine bresthing treatment. Well, to our surprise, when they came in with the results, I almost fell out of my chair and started crying. I thought they made a mistake and gave me someone elses blood counts. A week ago Friday, her counts were on the rise, platelets were up to 60, hemoglobin was up to 11.4, and her anc (immune system) was at 0.8 - which is still low, but not compared to what we saw this Friday. EVERYTHING TOOK A MAJOR DROP!! Sydney is now neutropenic.... that means she is at HIGH RISK for infections. Her anc dropped to 0.4 It has not been that low since she did high dose chemo over last summer when she relapsed. Her platelets fell back down to 22 (life threatening levels), and her hemoglobin dropped to 9.0 - that makes her very tired and exhausted feeling because your red blood cells are what carry the oxygen throughout your body. What a mess. This accutane is supposed to be giving her body and blood counts a break, and time to come back up. We don't know if the accutane is what is causing this or not. All of the drs are confused because this never happened to her when she was on it in the past. Her Dr in NY said that accutane could cause neutropenia and low hgb, but it is very rare, and it does not cause plts to drop. So, once again, Sydney is a medical mystery, and we just wait and see what happens. We will be back in clinic bright and early Monday morning for transfusions, unless this was just a fluke, and her counts will be back up. We'll see tomorrow.
Today, Syd and I are going to Saks for the mother-daughter pampering day they do for all of the girls in the fashion show. We will be picked up at noon by a driver in a fancy Mercedes, then Sydney will get her make up done, nails, and have lunch. Then she will get to try on half the store to pick out which outfit she wants to model in the fashion show. It's a great day for us, and I will take lots of pictures.

Thanks for checking in again, and Ill update tomorrow when we se what's up with her blood counts.

Michelle
******************************************************************************
Monday February 18

I am happy to say that this past LLLLLLLLOOOOOOOOOOOOONNNNNNNNNNNNNNNGGGGGGGGGGGGG weekend is over!!!! It was the longest weekend in the history of long weekends for us. Kevin and I decided to repaint the exterior of our house, just the 2 of us. We both feel like we've been run over by a truck. The house looks great though, and next weekend, we will tackle landscaping. We must be crazy!!!

Syd seems to be doing pretty well, so far on her accutane. She started it on Friday, and only had one major meltdown. She is very sensative, and her feelings get hurt extremely easily. She walked out of the house barefoot on saturday and Kevin and I told her to get in the house and put some shoes on (loudly, due to headphones in the ears), and Syd cried her eyes out over it. That is the kind of thing that will happen on this med. (thank God, she's only on half the dosage as before). She is having some headaches and a little bit of a grouchy attitude. Also, her skin is already peeling around her mouth. She is using cetaphil lotion and aquafor. Those are supposed to be the best, according to the doctors.

On Friday, she had her plantar warts frozen, but before that, shey were scraped. The surgeon shaved 3 layers off the big one which is now the size of a dime (no joke) on the bottom of her big toe. It is so big, it is making the skin bulge out on the side and starting to grow over her toenail. It bled a lot, but she never cried. She was so tough, as always. We will go back again for another shaving and freezing on the 29th. I hope it starts to work soon.

Sydney will be in this year's Fashion Funds the Cure Fashion Show again, at Saks in Westshore Mall on March 11th. If you have never been, I urge you to go if you want a great night out. The cost is $75, but it is so worth it. There are lots of buffets of wonderful foods from the bay area's best restaurants like bonefish and Flemmings steak, there are also many open bars with wine and cocktails, and a delicious desert bar. There is also an amazing silent auction with so many terrific things to bid on. There will be many celebrities there, as they are the escorts of the girls in the fashion show. This year, they are having a special alumni walk for all of the girls who have been in previous fashion shows (Survivors)!!! It will be a great night, and I hope lots of people will come out. All of the money supports the Pediatric Cancer Foundation in Tampa, which is a great organization for may types of pediatric cancer research. It will be a night you will remember always!!

Thanks for checking in, and I'll try to update more often. I know I have been slacking lately (as a friend pointed out to me today)....ha ha!!!

Please continue to pray, pray, pray for a new and improved treatment for our children battling NB. Hopefully, it won't take too long.

Check out the new slide show. The pictures were taken by an organization called Flashes of Hope. They did an amazing job!! Thank you!!!!

Monday, February 11, 2008 7:54 PM CST

NEW ENTRY - Tuesday Feb 12,
Hi again, Sydney's HAMA results are in ad she is still positive. In fact, her hama # actually went up. This was not the news we were hoping for. Basically, she will not be able to use any therapy consisting of mouse antibodies for at least another 6 months. It could even take longer than that for the hama to go away.

A treatment decision was made also. It was what I suspected *accutane* We fought it last month, but this month is always another story - we have no other options. Sydney has done the "accutane thing" twice before for a total of 10 rounds. She was miserable due to painful joints, raw bleeding skin, and horrible mood swings - that is how accutane effects her. Maybe this time will be different. There is an old saying "third time is the charm". I like that one, but in the back of my mind there is that other saying, "three strikes -you're out".
She is no longer eligable foe any sort of chemotherapy - even the lowest of doses. Her poor body just can not tolerate it anymore. We need to give her marrow lots of time off to recover - just incase she progresses or relapses again, and needs high dose chemo. Thank God she has lots of stem cells "in the bank" for an emergency.

Unfortunately, we are between a rock and a hard place. If we do not agree to do this, the other option is do nothing. That would be an easy decision if Sydney was NED (disease Free), but she is not, and never has been completely NED. There is still cancer in her body - definately the leg, possibly a couple areas in the chest (questionable). But I can not just sit back and do nothing while the cancer takes over her body. No treatment, is not an option for us. She has to be on something all the time to keep the cancer in check. We will be going for scans next month, and hopefully by then, there will be good news on the vaccine trial, and she can slide right into it.

Please pray hat she has no disease progression until a new treatment is available.

Thanks for checking in, Michelle

******************************************************************************
Hello,

Well, no chemo again today. We went into clinic this morning, ready to start, and to our surprise (AGAIN)Sydney"s platelets were too low to start. In fact, she needed another transfusion. I feel like a broken record. Every Monday I write the same thing. It has been 5 weeks since she fiished her last round of chemo. She was only supposed to have a 2 week break in between cycles. This treatment plan she is on is not working out. I wrote NY today, and asked them to come up with a "plan B". Hopefully, I will hear back from them soon. So, this week will be like the past 5 weeks, clinic appts, transfusions, and another dermatology appt on Friday. She is looking forward to that appt, and is planning to beg the doctor for surgery to cut out the warts on her feet. I don't think that will happen due to her low platelets - wouldn't want her to bleed to death!!!!! Bjut, who knows where we will be on Friday...Maybe things will finally start looking up and going in the right direction.

Thanks for checking in, and PLEASE pray for a new, successful treatment plan for Sydney!!!!

Michelle

Tuesday, February 5, 2008 9:16 AM CST

Hello,

Well, Chemotherapy did NOT start yesterday. When we went in to the clinic to check her labs, all of the blood counts have dropped again. Her platelets were down to 11, hemoglobin was down to 9, and her ANC was down to 0.8

So, she got a platelet transfusion yesterday, a type and screen for a red blood transfusion tomorrow, and we wait another week. Maybe next Monday will be the day.

The good news is that the hives went away. She woke up yesterday morning hive-free, and has stayed that way so far. I know from my own myserable experiences that hives all over the body are torture. So, she is much happier without them. Her infected knee is much better also!!! Her sinus infection is pretty much the same, no better or worse. I guess that's because she just doesn't have the immune system to fight it off.

Thank you for all of the suggestions on the plantar warts - some of them are quite gross!!! We go to the dermatologist again next week, so I am going to ask about each remedy.

Sydney will have a HAMA test tomorrow. Our hope is that her hama is gone, and she can stop chemo and restart the 3f8 antibodies. Please pray for NO HAMA. Her hama level was around 4000 in December, so it probably is not low enough yet to start the therapy, but you never know, right??

So, the rest of this week consists of clinic appts, school work, Drew's band concert Thurs, and Drew's soccer game Wed. We also plan to get lots of rest in between to get rid of the sinus issues.

Thanks for checking in.... until later, Michelle

Thursday, January 31, 2008 10:22 AM CST

Sunday Feb 3,

Hi there, Just a quick update:

Syd is hanging in there.... She has so many issues right now, but like always, she just keeps on going without complaints. We went to clinic on Friday and her platelets were up to 30. That means no transfusion (barely). If they hold over the weekend, she can start her Temodar (chemo) on Monday. She also has a sinus infection and an infected knee. There was a red line going up her leg from the scrape. So, she started antibiotics on Friday night. Well, I think she is probably allergic to them because on Saturday, the hives began. They are pretty unresponsive to benadryl, and are worse today. Now she is on Benadryl alternating with visteral. It seems to help a little. I am going to hold off on her dose of antibiotics tonight to see if the hives go away. She will see her dr tomorrow anyway. It's weird though, because she has been on Augmentin many times before with no hive reaction. Who knows what's up, Sydney is always a medical mystery.

As far as her plantar warts go, I have had several emails telling me to try duct tape. Well, believe me, we have!!! She has been putting duct tape on them for 2 months now, and they are just so stubborn. Mostly because of Sydney's compromised immune system. Right now, she is using a topical med called Aldara and then wrapping them in duct tape. Only being changed when she showers. And she will continue getting the freezing treatments every 2 weeks. Hopefully, it will get better soon. She's going nuts!!!

We are just hanging out around the house today resting and cleaning. ** We are not having a superbowl party, nor are we going to one.** None of us feel up to it right now.

Thanks for checking in today, I'll update again soon.

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hello,

We made it back home safely from our Orlando trip. We had a great time with friends, but we are all so exhausted. Sydney was able to have a good time even though she could not ride the big, fast rides. Even though she took it easy, she still managed to end up with about 60 bruises all over her body, some quite large. Her platelet issue has not resolved yet. She got a transfusion the day before we left for the trip (pre-transfusion, she had a platelet count of 6, and post-transfusion, it want up to 60 - which is still very low). Anyway, platelets only have a shelf life of 2 days - we were gone for 5 days. When we got home Tuesday morning, we went straight back to the clinic for counts. Her platelet count was 9, so she got 2 bags of platelets on Tuesday. We thought it would give her a great bump in the #'s but it actually only bumped her up to 54. She fell at her friends house last night and scraped her knee. She said it took about 30 minutes to stop the bleeding. She is a mess right now.

She is sleeping now. Apparently, we all caught some bug on the trip because we all have runny noses and feel kind of crummy. Sydney, of course, has it the worst, and is running a slight fever now. I will watch her closely, and hopefully, we will not end up at the hospital for a 3 day stay. She has a dr appt tomorrow to get more platelets, and a check up.

Yesterday, she had a dermatology appt for the 2 plantar warts on the bottom of her feet. They have been unresponsive to treatment for 6 months now, and they are really painful for her when she walks. Anyway, she had the first of several cryosurgery procedures to her big toe. It sounds scary, but it's just freezing. She took it like a champ, and didn't even cry. We go back in 2 weeks for treatment #2.

Also, today, Sydney is going to the eye doctor for her new contacts fitting. Her vision in her right eye has decreased again, and the astigmatism in her left eye is slightly bigger. She wants to try contacts along with the glasses.

That's about all for now. I do not know when Syd will begin her next round of Chemotherapy. It should have been last wednesday, but we need to wait for her platelets to recover first. Hopefully, it will be soon.

Thanks for checking in, Ill update again soon

Michelle

Tuesday, January 22, 2008 1:38 PM CST

Hello,

We had a wonderful weekend. It did snow a little bit and it was beautiful. We had a great time!! We arrived home last night to find that Sydney's dog, Buddy, was missing. Yes, he is the same dog who got out in June. So we spent the next few hours out searching for him. Luckily, some wonderful people found him and put a sign out that they had found a dog. I don't know how many times we are going to get that lucky. I am afraid to leave the house at all. We are going to Orlando this weekend with some friends from the Loneliest Road Campaign, and the RMD House, and Buddy will be boarded at the vet!!!

We went to the clinic oday to resume Sydney's chemo, flush her port, and do a pentamadine treatment. We were shocked to find out that she needed a blood and platelet transfusion. So, we will NOT be restarting chemo, and we will spend 6 hours tomorrow getting the transfusions. This chemo was not supposed to do this to her blood counts, but I guess after 4 years of therapy, the body gets tired easily. Hopefully, she can get back on treatment next week, if her counts come back up. Please pray for that!! She is extremely mad because she is now on roller coaster restrictions because of her extremely low platelet count of 16. It is not safe for her body to be shaken and thrown around due to bleeding and bruising issues. (obviously) But....what's the point of spending 5 days at theme parks when you can not ride the thrill rides????? It is an arguement I will have with her all week. I feel bad that this is all happening at the last minute, but oh well, it is what it is.

Thanks for checkng in on us today, and I'll update again soon!!
Michelle

Thursday, January 17, 2008 1:56 PM CST

Hello, Thanks for checking in today.

Sydney is still doing great!!! Other than being a little tired (to be expected) she feels wonderful. Her blood counts were checked yesterday, and holding their own. Those platelets are creeping down, but not quite at transfusion level yet. Her plts are 45, and the transfusion level is 25. The normal platelet count of a regular person is between 200-400, so she does need to be careful. She counted, and she has 13 new bruises on her legs from 2 days ago It doesn't help that she slides all over the hard wood floor playing air guitar all the time. She's a nut!! Her ANC is hanging out around 1200 (OK for a cancer pt, but not great), and her HGB is 11, which is pretty good. Can you believe that it's already time to start another round of chemo next Wednesday???

Some of you may have remembered that this past Tuesday, January 15th, was the 4th anniversary of Sydney's diagnosis. What a rollercoaster she has been on, but I feel so blessed that she has done so well with all of her treatments, and that she is still here with me. Even though she has never been in remission (4 years straight of battling cancer), we are so lucky, because I know of so many other families who have lost their precious babies in a much shorter time. I am confident that Sydney will be around for much longer, and eventually will be cured. I have to believe that, and I do.

we are taking a weekend get away this weekend. We are headed up north, and hope to see some snow up in the smokey mountains. It snowed there last night, and we are hoping that some of it will still be there over the weekend.

Drew has been pretty sick lately. I have not mentioned it because I was really scared. He has been complaining of headaches behind his right eye for about a month now. He has severe asthma, as most of you already know, and requires monthly antibody treatments to help with the symptoms, as well as many daily meds. About a month ago, his doctor changed some of them, so I was hoping that these side effects were just from the meds. Then, I was thinking that maybe it was migraines. Then, when I thought about it, it was in the same spot every time he had one, so I starting worrying about a brain tumor. (this is how a mom with another child who has cancer thinks) very paranoid!!!!! Anyway, at his appointment this week, his doctor sent us for xrays. He told us to get the xrays, and bring them back to him. So we did, but I had to look at them before I handed them over. He has a giant "tumor looking blob" over his right eye, and under it. I thought I was going to die right there, but tried not to seem concerned with Drew right there with me. He even said, "Is that a tumor" (how a brother of a sister with cancer thinks). Anyway, it ended up being his sinuses .....THANK YOU GOD!!!!! He has a terrible sinus infection. The doctor said it was really bad, and that was definately what was causing his headaches...THANK YOU GOD!!!! So he's on 2 weeks of antibiotics to add to all of his other meds. My kitchen totally looks like a pharmacy!!!

Well, I'll will take lots of pics this weekend on our trip, and Ill update again soon

Michelle

Friday, January 11, 2008 9:27 AM CST

Hello,

Sydney is doing great!! She finished this round of chemo on Tuesday, and had minimal side effects with it. She will have a 2 week rest "off" and then do another round. So far, her blood counts are holding up and she is not needing transfusions, but we still have some time for that. She should hit her lowest point next weekend, although, so far, the counts have not dropped at all. With each round, it should hit her harder, but for now, we are happy.

The kids are back in school (Syd home school) and doing great. Drew is starting soccer next week, and is excited about it. Kevin is running the Disney Marathon in Sunday with his buddy Rich from NY. The weather is HOT for running, so I hope they will do well.

Other than that, there is really nothing much going on. Sydney has a clinic appt on Wednesday of next week to recheck her blood counts, and I will update again soon. We do not have any plans to return to NY any time soon. SHe is due for scans in March, but hopefully, the vaccine will be ready, or her HAMA will go away by then and we will have another option besides chemotherapy.

Thanks for checking in, and please continue to pray for the children battling. Unfortunately, there have been a handful of NB children who have relapsed, or their disease has progressed in the last week. It seems to come in waves, and it is just so unfair.

Michelle

Thursday, January 3, 2008 8:12 AM CST

Just a quick update...

Syd is tolerating her chemo well. She has felt a little puny on and off, but takes lots of good anti-nausea meds for it, and they are helping. She is finally starting to eat (due to Megase)and is sleeping a lot. Lets hope that the second half of this cycle goes a ssmoothly as the first.

Thankd for checking in

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Hello,

Well, after a nice long break off treatment, it is time to restart. We finally got the rest of Syd's results yesterday. Here's the final reports....

MIBG SCAN - Left Femur disease, nothing else
CT SCAN - head and orbits are clear, chest has a few areas that are questionable still, but stable since August, so they are not too concerned
MRI SCAN - few questionable areas in thorasic spine, but again, mostly stable, so no worries

The reason they are not too concerned with the MRI and CT is because the areas of concern are not showing up on the MIBG scan, and that is the scan that is most sensitive to Neuroblastoma.

BONE MARROWS - No evidence of NB
URINE - Perfectly normal UVA - 7 VMA - 9 LDH - 167

SO, what now????? Well, they called me last night to say that they wanted to give Syd's blood counts more of a break, and for her to go back on Accutane. I was shocked because Accutane poisoned her 2 years ago, and last year Accutane caused permanent joint damage in her knees which causes her to still need a stroller or wheelchair when we walk a lot. Anyway, I voiced those concerns, and in the background, Sydney was yelling "I'm not taking that, NO WAY!!!" So, after debating the pros and cons of all of the meds Sydney has been on in the past (which is everything) we decided on Temodar. She is not taking it with Irinotecan this time, just Temodar alone. We will see what it does to ger counts, and if it's not too harsh, we may do more than one round of it - until the vaccine or something better is ready for us.

I pray that 2008 is the year for a breakthrough in Neuroblastoma.

We had a wonderful holiday. Tonight, we are headed to the Ringling Brother's circus. It should be fun. The kids don't report back to school until Jan 8, so we are trying to squeeze a few more days of fun in before the effects of the chemo start.

Thanks for checking in, Love, Michelle

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