History

Friday, August 20, 2004 8:43 PM CDT

YES WE ARE STILL AROUND!!!!!!!!!!!

I vowed, if nothing else, I would update this page this week! I am going to try to add journal entries more often!

So much has gone on since I last posted. Syd has been off treatment for 5 months now, and is still cancer FREE!!!!
The pics are from the last month or so. Great song huh? But let me say "wishing upon a star"=FAITH! Faith is what has gotten us this far and what will get us through anything.

Syd is growing and doing great. She will be 2 in October and is doing everything above and beyond what she should! Her vocab. is absolutely incredible!! She is still our little sunshinegirl.

Hopefully you all are still stopping by. I am going to send an email out to let everyone now the site is still up!

Just a quick note: I am doing a "fundraiser" in the month of September for Childhood Cancer Awareness Month. This is possible through my jewelry business. I am going to take a portion of all the homeshows and catalog shows I have in September and donate the money to ASK-our non-profit assoc. that supports MCV. They have done so much to enrich our lives and the lives of other children; now I would like to do something in return for them. If anyone is interested, please let me know.

REMEMBER: Keep checking back, I PROMISE TO UPDATE MORE OFTEN!!!

Thanks Again for all of your continued support and prayers, we love you all.

Mommy, Daddy, and Sydney Nicole

Thursday, January 29, 2004 10:02 AM CST

I know it has been a VERY long time since I have updated this page and I APOLOGIZE!!!!
I figured today would be a good day to add a new posting. Sydney was dx a year ago today. I have been dreading this day for the past few weeks, but it hasn't been to bad. I was driving to school today and tears came to my eyes as I went through the toll to get off(last year I went through the very same toll, just in a different direction). I am hoping that symbolizes the future.
I am hoping to get new pics of sydney up soon. We just need to download them from our camera.
Syd is doing great. She is toddling all over the place. Her vocab is incredible (we really have to watch what we say b/c she repeats everything=)
She has slept through the night 2 nights in a row now!!!Hopefully we can keep it up, we've been working on the "sleep issue" this week. Once thats down we will work on getting rid of the bottle and potty training. We are also trying to get her to not be so "demanding" of us. Since treatment started we kind of allowed the extreme of that.
She will be done with treatment in about 4 weeks. It is a very scary thing. The first year off treatment will be pretty hard(normally relapse occurs w/in the 1st year off treatment..if it happens).
I hope everyone is doing well.
I promise I will try to be better at updating!!!
Take care

Monday, September 15, 2003 9:01 AM CDT

I AM SO SORRY THAT I HAVEN"T UPDATED LATELY

Things have been so hectic lately. School started back up, we are moving in a couple of weeks (still need to pack!!) and my mom went home this past weekend.
Syd is doing great. I think she is cutting a top tooth. She is crawling all over and pulling up on everything! We are trying to teach her no, like playing with the tv buttons, she isn't doing so well in that department!!
Other than that there is not much else to report, she has been steady going with her treatments. She will be admitted for one of her treatments next week. We are having a physical therapist check her out then. Her ankles are very weak and rolly, the docs think it is from the vincristine...so that is probebly why she hasn't taken steps yet, she's ready too...
I hope everyone is doing well...My plan is to try to get some pictures up on the web in the next few weeks..so keep checking
take care
Sarah

Thursday, August 7, 2003 9:21 AM CDT

Hello everyone.
Last Thursday Sydney developed another line infection, but b/c her counts were high enough we were able to just treat her at home instead of being admitted. So she is on antibiotics through her line every 6 hours for 2 weeks =(

She started week 18 yesterday. She can now go back to the sitters. I think it will be very good for her to be able to play with "little people".
She is also coming off her TPN. I thought when they said they were going to taper her it would take a few weeks!!Oh was I wrong, she will be completely off of it be Saturday.
I am excited and nervous at the same time. The TPN has been a pain, yet also a security blanket. But she will be in clinic every week and her weight will be checked to make sure she is gaining appropriately.

I just want everyone to know how much I appreciate all you have done.
Our family has been a great help in many aspects, especially my mom. We are not near the end of this road yet, but I think it is important to remind everyone how appreciated they are.
I love coming and checking her guestbook. I feel comforted knowing that even though I don't personally know some of you, you are out there thinking of us. To our friends and family that we don't get to talk to or see nearly as much as we would like, please know we still love you all. There is just not enough time in the day anymore.

I hope all is well.

Tuesday, July 29, 2003 7:30 AM CDT

Well, Sydney had another count check yesterday. Her counts are finally coming back up. And once again Sydney has "defeated the odds". Our oncs told us that after the ARC she would probebly get a fever/infection...and as they said yesterday, she has once again proved them wrong!
Hopefully she will be starting week 18 next week and we can look into her going back the the sitters and see were we stand at getting her off the TPN.
We will start to have a normal life back (well, kindof, at least she can venture out of the house more!!)
She loves standing, but its scary.
Hope all is well with everyone.

Tuesday, July 22, 2003 1:18 PM CDT

Sydney had her high dose ARC early last week. We had an appt today. She still needs to stay on G-CSF, her WBCs are only 0.1 (100). She also had to get platelets today they were 18. We are just waiting for her WBCs to recover now, and pray that she doesn't get a fever!!!
She is cutting another tooth, her other bottom one. She is beginning to stand holding on to things.
I am going to have to put new pics up again soon!!!!
Hope everyone is doing well.

Tuesday, July 8, 2003 11:56 AM CDT

WEll we had a very good weekend. We all went to the house at the river. Daddy and I got a chance to go out on the boat. Sydney didn't get to go outside (daddy said it was to hot for her). But she still had a good time anyhow. She is saying mama and papa now.
She had count check yesterday. Her counts were not high enough yet to come off the G-CSF. So she will have another check on thurs and if they are high enough she will come off it and hopefully be able to start her next round of chemo next week.

We had to poker run for the leukemia society two weekends ago. WE won 2nd place for fundraising!!! WE had a great time.

Hope everyone had a wonderful 4th.

Thursday, June 26, 2003 9:45 PM CDT

Well Thank God the infection cleared!! They were able to save her line (if the infection hadn't cleared by yesterday they were going to pull it).
She started week 13 of her chemo yesterday and is tolerating it well. She will need blood tomorrow but that is expected. Hopefully she will be coming home early next week.
I think when she gets home she will crawling!!!
We have the poker run for the Leukemia Society this weekend. Thanks to everyone who donated, hopefully they will find a cure someday.
Don't forget, anyone that wants to make a square for Syd's quilt..check the previous journal entry for info.
Sarah

Saturday, June 21, 2003 3:15 PM CDT

Well, sorry Eva, no news is not good news...
Tues., Sydney was very fussy so Wed., I took her in to clinic. They said she had some really bad sores in her mouth from mucositis from the HDMETH. They cultured her. On friday we had an appt. They said that the culture came back gram positive, but they wanted to re-culture b/c they only used one vial, and it could have just been a contaminate. Well, we got a call at 4:30am to bring her in, that the cultures had already started growing. She is running a fever and is sleeping alot. But of course as Sydney's way, she is trying her darndest to be a happy baby.
They also said that the line may come out b/c the cuff is fully out. They took her for xrays to see the statis of the line. They also took blood from her arm this morning to see if the infection was in her whole body or just the line. We should know more in the next couple of days...
I am going to rest now for a little bit. Thank God I have my mom here!!
Sarah

****UPDATE*****
Sunday June 22, 2003
Syd does have an infection and a fever, but they are hitting her hard and she is being her same fighter self.
The quilting angels are making a quilt for Sydney. If anyone knows how to make squares for quilts go to this link:
www.quiltingangels.org/sydney.html
I think it is an awesome thing that they are doing!!!

Monday, June 9, 2003 9:41 AM CDT

Sorry it has taken me a little while to update. The benefit on May 31st for Sydney went pretty well despite the rain!! Thank you to all who came.
Sydney made counts last Thursday and was admitted to start HDMETH. She did really well, she loved being in the hospital getting all the attention! She sat up on her own really well in the hospital. Our next appt is friday, if she makes counts she will go in for her next round of HDMeth.
I hope everyone is doing well. Thanks for checking in on us.

Monday, May 26, 2003 11:58 AM CDT

WEll Sydney didn't make counts last week. We are shooting for this Wednesday, but I am not going to be shocked if we don't start.
I got some incredible news from the docs last week. They said after we get through this phase (5 weeks when ever she decides to start), she can start going out more AND can go back to her babysitters. They said they do not see any problems with it, b/c it is not like a daycare center. They, along with me, think it will be a very good thing for Sydney Nicole. She is a people person, and goes stir crazy being kept up in the house. It will also be good to get around children, devlopmentally. Our babysitters little boy is exactly 6 months older than her...maybe he'll teach her to drink again!!! =)
Of course we will take it slow, but I was just shocked, I didn't think she would be able to go back until she was entirely off treatment. It also takes some stress off my shoulders...

GUESS WHAT!?!?!?!

Last night I felt in Syd's mouth, and then proceeded to use two rubber spoons (one to hold her tongue back and the other to pull her bottom lip down) AND BEHOLD there was a glimpse of white!! She is starting to cut her first tooth!!
That explains the "moods" or "fits"

Hope everyone had a good holiday weekend.

Talk to ya all soon

Saturday, May 17, 2003 11:56 AM CDT

NEW PICTURES!!!!

Sorry I haven't updated lately, it has been a hectic few weeks. School is finally done for the semester!!! I did pretty well, thanks to the grandparents for helping out!! Especially my mom.
Well Sydney started week 8, and did ok. Mother's Day Sydney spiked a fever, 99.4. So we were at the hospital that night and for the next few days. Nothing ever grew from her cultures, so we don't know what that was all about. She is doing very well. If she makes counts this coming Thursday, she will start week 11 which is high dose MThx. She has a sore on her bottom that we are trying to fight right now. The prednisone has increased her eating slightly, but still not drinking. We are going to start seeing a therapist to help her drink...Pretty funny, my 7 1/2 month old is going to a therapist!!!

I hope everyone is doing well. Thanks for being patient waiting for me to update!!! I'll try not to be so slack again!!!
Talk to ya all soon

Wednesday, April 30, 2003 2:29 PM CDT

Well we had clinic again today. Sydney's ANC had to be at least 750. With an ANC being that low, the only way to verify is to actually count the cells on a slide. Leave it to Sydney Nicole!!!! Her ANC was 751!!! She made counts by just one cell. I told her that is amazing, only one single little cell that allowed us to start her chemo today. Although it was only one cell that brought us into this "cancer world". I told her, although she doesn't understand, that "only 1" of anything in life can make a huge impact. Think about it....
Anyhow, she started her chemo today and got her 4 month immunization shots that have been put off. She did really well, she cried out when she got them, but then 30 seconds later she was smiling and laughing again. That is Sydney's way. She will have to go in again tomorrow for more chemo, then friday she is checked into the hospital until Sunday unless something "happens".
It actually works out well for me since I have 2 finals on Monday and 2 on Tuesday. I will actually have a little time to study!! (or at least glance over)
I will keep everyone up to date...
Remember tomorrow is National Prayer Day. Christina, the little girl in NC is actually getting her "new cells" from the bone marrow transplant tomorrow. So please say an extra prayer for her.
Thanks again to everyone, you will all never know how you have touched our lives in so many ways. So many times I am having a "rough patch" and I come to Syd's site. I always happen to see a few nice words in her guestbook and it somehow brightens my day.
Take Care
Mom

Tuesday, April 22, 2003 12:55 AM CDT

Well another frustrating day!!!
Sydney didn't make counts again today. Her WBC was only 700. They are not worried yet, b/c her counts didn't do a big drop. They ran a test to check for parvo virus. The results for that are not back yet. Just like Sydney has been since day one "anything other than textbook", the docs don't have an answer to what is going on. Her body just seems to be taking a long time to come back this round. We have to go back friday to check counts again and see if there is any progress.
Thanks again to everyone who has been checking on us.

Just to let everyone know, there will be a benefit for Sydney on May 31st, just give us a call and we'll give you more info.

Also, Aunt Donna's church still has the account open, just check on the guestbook for more info.

Hope everyone had a great Easter!!
Its coming to the end of the semester for me, so I am pulling my hair out preparing for finals and finishing up the semesters work!!

Talk to everyone soon
Sarah

Tuesday, April 15, 2003 3:52 PM CDT

Well today Sydney was suppose to start her week 8. Her counts came back @ 700!! So we decided to go ahead with her spinal tap and chemo in the CNS and the bone marrow asperation. I sat nervously waiting for the slides to dry so the doc could look at them and give us a clearer picture of what was going on. I joked and said that next time I was going to bring my microscope in so I could look at them!!
I knew as soon as I looked up at Dr.Massey's face. She was standing in the door way smiling ear to ear.
NO BLASTS!!!!!!! Thank God!!!!
Yes, that is what we were all fearing. We are hoping her counts will be up by next Tuesday so she can finally start week 8!!!
So Sydney Nicole gets another week off, and she will be home for her first Easter!!
Thank you again for everyone checking in on us. There are some of you that I don't "know" other than through the www, and please know I do appreciate you all checking in all the time, Pam, Eva, just to name a few.
Also, our Aunt Donna's church is doing a wonderful thing for us. Although we have insurance, the cost of having what we in the cancer world refer to as a "chemo kid", is tremedous. The church has set up a way that if people wanted to they could send donations for Sydney to them. All the info is in the guestbook were Aunt Donna signed. Please don't think we are "begging", b/c it is hard for us to ask for help in anyway, we are just learning how to do that. But, some people feel that money is what they can do to help, so this is an avenue where they could do that.

Thanks Again to everyone and please keep the prayers coming, also add Christina to your prayer list. Her parents somehow got my email when Syd was first dx. Tina is just about a year now and has ALL also. I keep in close touch w/ her family. They are having a tough time right now trying to deal w/ BMT. If you would like to visit them her webpage is:
www.caringbridge.org/nc/christina

Take Care and "talk" to ya all soon
Sarah

Tuesday, April 8, 2003 12:55 AM CDT

Well today Sydney was suppose to start week 8. They came back and said her counts did not make it. Her WBCs dropped to 1200. Her ANC had to be at least 750, I think it was only 650. They said it could just be from being off the g-csf, or that she could be brewing something, and trying to fight it off. I guess we will know in the next couple of days if she spikes a fever!!!
The bad think about it is I just went to the doctor on Sunday, I had a sinus infection AND the flu!!!
What are you going to do!??!?!
Lets just keep praying that her counts will be ok and she can start next Tuesday.
Sarah
Stressed out, looking for happy pills =)

Friday, April 4, 2003 9:00 AM CST

Sydney went for a counts check yesterday. Our appt was @ 10:30am...and can you believe, we were home by 12:30!!!
Her counts showed great recovery, wbc 9,100 and a anc of 5700. So, no more g-csf for now. Her counts more than make it to start the next round, except for her platelets, they have to be at least 75,000 and they were at 69,000. Thats not a big deal, they should be up in a couple of days. But this week, week 8, starts out as a bone marrow asparation, spinal tap, and the first two days out patient in the clinic. They had no openings to do the tap and marrow today. Also, being that it is friday, they would have a hard time swinging it with insurance to admit her when the first two days are suppose to be out patient!!!
So, we will be starting next week.
Its suppose to be warm out today so I think we will go for a walk.

Saturday, March 29, 2003 6:08 PM CST

Well as I said in the journal entry a few days ago, when it rains, it pours. At this point I am waiting for Noah's Ark to show up on my doorstep! =)
Last night Sydney's nose was bleeding. I called the doctor and she said to bring Sydney to the ER for platelets. We got there at 11:30pm. When she got into the room, she started sneezing and huge hunks of blood shot out. This happened about 10xs throughout the night. A little while later she coughed up blood. I started freaking. But the doc said that it was just postnasal drip, not interal bleeding. So, they finally gave her platelets around 4am. She had a few more sneezing gobs of blood episodes. So they decided to give her another transfusion of platelets. At 8am they decided to give her a blood transfusion b/c of the amount of blood she lost.
We finally made it back home around noon.
Her white counts are really low right now, 400. So we have to be extra precautious.
Thanks for all the prayers and thoughts. WE ALL need them, especially now.

Friday, March 28, 2003 9:02 AM CST

Well, when it rains, it pours.
Sydney came home Tuesday. On wednesday she was throwing up. Thursday I called clinic and they said to bring her in. So we got there about noon. I had to be to work at 4pm. At 3pm I called work to tell them I would be a little late. At 4pm we were still in the room waiting for them to do another test. I just lost it, I broke down crying. Yes me, I was crying. Our NP said,"I know its rough to balance schedules". HA, for those of you that "know whats going on with me", you know that is not why I lost it...I only wish.
Well, the test was done and they decided that she was not feeling well b/c her dextrose in her TPN was @ 25%. Her glucose was sky high. They backed her dextrose down to 19% and we were out the door. Her platelets are getting low, we have to go Monday for a transfusion. I got my mom and the baby home and ended up getting to work 2 hours late. They were ok though. Of course the other grandparents were worried, b/c they were calling the house all day, and of course we didn't answer b/c we weren't there. So I called papa to tell him what had happened and he called mima. I was going to call them and let them know what was going on anyhow, but I didn't call to let them know we were going to clinic, b/c I wasn't sure what was going on and I didn't want to unnecesarily alarm them.
So, that was my day. You know, its funny, I read an email that was sent to me Wednesday evening. It was sent awhile back, I just never checked it. For those of you that know, you will know why it was "ironic" that I read it that night.
It had to do with a verse in the bible about silversmithing. A lady didn't understand the verse, so she went to watch a jeweler. The man said that he must hold the silver in the flames, and that he must sit there with it the whole time. She asked how he knew when it was finished, and he said, "When I see my reflection in it". The email said to send it to someone who you know is having a rough time, in the middle of the flames. To let them know that someone cares.
You gotta love fate...
Please pray for us, especially now.
Sarah

Monday, March 24, 2003 6:42 PM CST

Well Sydney is doing very well with this round of chemo. However, she is still not eating. The docs say its ok, so she will be staying on TPN for awhile. We are expecting to bring her home tomorrow. She will actually get a break!! Week 7, which starts this friday, is an off week except for clinic to check her counts. It'll be nice to have her home for more than a couple of days.
She is getting much more active. She constently moving her legs, arms and body. She loves playing with her toys. I'm just waiting for her to roll over and take off crawling! =)
Thanks again to everyone who keeps checking in on her. I love reading everyone's entries.
Someday Sydney will be able to read them too! =)

Monday, March 17, 2003 7:17 PM CST

Well, we had a wonderful time at home last week. We got to go for a walk!!! We checked back into the hospital on friday. She got her HDMEX. She is actually scheduled to come back home again tomorrow. Although, we have to check back into the hospital on friday. Sydney Nicole is doing really well. I got the stomach flu this weekend and am still feeling pretty bad.
Hopefully we will be able to go for another walk this week.
Make sure to check out Sydney's quilt at the link below. I LOVE IT!!! THANKS TWIGGS!!!!
Talk to everyone soon
Sarah

Monday, March 10, 2003 6:51 PM CST

I can not believe that our website has broken 1000 in a week!!!!
Thank you to everyone for checking on us. Please sign the guest book!

UPDATE:

SYDNEY IS COMING HOME TOMORROW!!!!!!!! =) =) =)

The doctors said they wanted to get her home for a few days before we start the next round of chemo. We have to be back to the hospital Friday morning. We were joking, asking if we could store some of her stuff there!!! Her bottom is looking much better. The sores in her mouth are also getting better. She is, and will be, on TPN. But she is taking a bottle fairly well. This is just the perfect time for her to be able to come home for a few days. I am on spring break, daddy had already taken off thurs and fri., and it is suppose to be nice out later this week. I may actually be able to take my sunshinegirl for a walk! It is also good b/c I had a very bad day yesterday. Just thinking about the long road ahead, not knowing....Lets just say I "broke down" yesterday.
But the doctors say she is doing better than expected. That is very good reasurence.
Of course the nurse team will be out tomorrow, to train me on the IV. I had to get her prescriptions tonight. THANK GOD for insurance. The bill was still hefty, but the amount it was before the insurance would have drained us!!
Sydney is really starting to "come into her own". She is such a HAM. She's always smiling and laughing now. It makes my heart feel so good to see her like that.
Make sure to stop back in a couple of days. I plan on adding some more pictures.
Thank You again to everyone.
And keep the prayers coming.
Sarah

Wednesday, March 5, 2003 3:51 PM CST

First of all THANK YOU SO MUCH to all that have come and visited our website.

Second--The images on above are downloaded from a site that is free. WE DO NOT benefit in any way from people purchasing the products. Since the site is free, that is probebly how they make some of their money.

Well Sydney is doing OK. She has developed some sores in her mouth. She is having difficulty eating, so the nutritionist has made her formula 27cal/oz. Her bottom is looking better. She still has not gotten her voice back yet. The doctors have an idea what it maybe from, but I'd rather wait to say until we know for sure. Unfortunately, because of the sores she can not start her next round of chemo. tomorrow. I am not sure how much longer we are going to be in the hospital. To tell you the truth, I don't even ask anymore. I'll know we are going home when they bring the discharge papers by. =)

We are holding up ok. I think both Troy and I are getting really drained. But I have spring break next week, so that will help. Speaking of Spring Break, its funny listening to all the students on campus talking about there "big plans". I just think to myself,"I am going to spend it in the hospital, and maybe if I'm lucky the baby will come home and I'll be able to take her for a walk..."I just find it funny how we take things for granted so often. I was guilty of that myself, until this happened.

I let one of the other moms at the hospital know about getting a website through CB. Her daughter, Rachel Simmons, has AML. I think she is about 1 1/2. Please keep her and her family in your prayers as well.

Sarah

Sunday, March 2, 2003 9:54 PM CST

Well, I just wrote the first journal entry..reliving something I hate to have to do AND GUESS WHAT!?!?I previewed it, wanted to add more and lost the whole thing!!!!

So, let me start again. Sydney's story is sort of strange. On November 20, 2003 Troy, my husband, was in florida for work. I was working that night. I picked the baby up from the babysitters and she said she had started a fever. I called the doctor and had to take her to the emergency room for a full septic work-up, b/c she was only 6 1/2 weeks old. We stayed in the hospital for a few days. Saturday morning the doctor came in and said Sydney has leukemia, they found "leukemic cells" in her peripheral blood. We were being tranferred to MCV. I had to call my mom to come in from Rochester, NY (were I grew up). To make a long story short, we were there a week and a half. After about 5 BM aspirations (clear), she was released having had a viral infection
IT WAS A MIRACLE...

January 28, 2003

Sydney has had a bad week. Normally she is a very content baby. I thought she might just be teething early. Then Sat. she had a nose bleed. On Monday the babysitter said she saw a bruise on her shin. Troy thought it could be from her kick start gym. I called the doctor and made an appointment for the next day.
Tuesday the ped. thought it would be best to just be on the safe side and get some bloodwork from the Ped Hem/Onc team. I knew. On the way to MCV I called Troy and told him not to worry right away, that I would call him from the hospital. Dr.Massey, our always sweet and happy doctor, came in to see her. She looked at her and said she wanted to get some blood work drawn. I knew. It seemed to take forever for the bloodwork to come back. Kathy, our nurse, came back and asked if I had Sydney's insurance card on me. I knew. I said, "I know don't I?" She just nodded her head. I looked over at my sweet baby girl, sleeping in her stroller. I just sighed, I couldn't cry...

We had to wait in clinic until they could open a bed. It was so strangely quite. We were the only ones left. Jim, the chaplain came in to see us. He put his hand on my shoulder. I could feel the tears running down my face, dropping down on my hand. For those of you that know me, I don't cry in front of people. Jim's seen me cry 2xs!! I save that for myself... although sometimes I would love to cry in someones arms....

We were admitted. The next day the bone marrow aspirate confirmed w/ a WBC of 50,000, that Sydney Nicole had pre B ALL t(4;11). That was her papa's birthday, some birthday present.
She started on chemo Thursday Jan. 30, 2003. She had some strita, and trouble breathing. But she is doing well now. She just finished up week four. She is eating very well. She has a rash on her bottom...it scares me to death...
Hopefully she will be able to come home this week....

Saturday, March 1, 2003 9:56 AM CST

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