LindseyAnn.net

Lindsey is 19 months today!  Wow.  She is doing so good.  She is really starting to expand on her eating!  She is doing great!  She is starting to talk so much.  The other day I was calling up the stairs for Riley and Lindsey came over and looked up the stairs and said "Riley" as clear as day.  It was soooo cute!  Riley was very excited that his name is the first one she said!  Also, Lindsey's incision is looking great.  All the steri strips are now off and it is healing just fine! 

On Thursday night we took the family to see Happy Feet.  On the way the check engine light came on in the Durango, then the overdrive went on and I could not get it off, then the Transmission Temp light came on.  It was awful.  I was near a dealership so I just pulled in and left it there.  The bad thing is that this is the only car that seats all 6 of us.  Jeff had to come and pick us up in the PT Cruiser.  I had to sit in the back, and had to share that little space with the stroller.  It was not fun!  Go ahead and laugh, I am sure it was a pretty funny sight.  So now it looks like we need some work done on the Durango.  We decided to go to the movie anyway and enjoy the movie!  It was a cute movie.  Everyone liked it.  Especially Lindsey.  She was dancing right along with all the penguins.  It was so cute!

Then Yesterday we went to Dollywood to see the Christmas display since out season passes were just about to expire and we didn't get to use them much since Summer.  It was beautiful.  We had such a good time.  Casey and Riley went on the rides, while Grandma, Brodey, Lindsey and I caught all the Christmas shows. They were excellent.  Lindsey enjoyed them all.  She would clap along with everyone and would wave bye-bye each time.  She rode the little ducks ride all by herself.  (This was the first time she was all alone on the ride, usually brother would ride with her.)  She was so cute!  She had so much fun.  I went to get her out when the ride was over, and she did not want to get out. I took her seatbelt off and she took it out of my hand and put it back across her lap.  Luckily the lady said she could go again.  It was a great day!  Be sure to check out the new pictures!  I hope you all have a safe and Happy New Year! 

 Sorry it has been a couple days.  I decided I better put a quick update before my inbox gets overloaded and my phone continues to ring off the hook.  We hope you all had a very Merry Christmas.  As you all know we did!  We got the very best Christmas gift that we could ever ask for!  A successful surgery for Lindsey and an excellent recovery!  No major complications!  Thanks be to God!!!!

Well the last couple days have been very, very, very busy.  Oh did I say very busy?  I had not done much shopping so I spent Friday night and most of the day Saturday (until about 1am) shopping.  Boy was I exhausted.  Not to mention all the unpacking, the laundry, going through the mail, and all that fun stuff that comes with being out of town for so long.  Oh and not to mention the boys all getting the flu, different days of course.  So that added to the laundry and clean up duties!  I am telling you the fun never stops here!  At least they all got it out of the way and we wont have to worry about them getting it during Lindsey's next round of Chemo.  Now Grandma and Grandpa have it.  Sorry!

I guess I should say that Lindsey is doing wonderful!  I think she is trying to make up for not eating the last week.  She is going to eat us out of house and home.  She is even experimenting with some things other than chicken noodle soup and mashed potatoes.  Those are always on the menu, but she is adding to them I guess I should say.  Today she added green beans and also mac-n-cheese.  She is doing great!  Thank you all for your prayers.  Once again they have been answered.

We had a wonderful Christmas Eve.  We decided to take Lindsey to Christmas Mass.  Everyone was so happy to see her!  She has not been is so long.  We can't wait until she can start going every week again and we can return to mass as a family.  Right now Jeff goes to one mass and I go to another, so one of us can stay home with her.  Grandma and Grandpa came in and joined us for Mass.  Then Grandma helped me wrap all the presents!  Thank you Grandma!  I think we were up until about 2 am!  Yuk!  (My least favorite part is wrapping the presents!)  Then Christmas morning came only a few hours later!  The kids were very excited!  Thank you to everyone that got gifts for the kids.  They had a wonderful morning.  I think it took us a couple hours to get everything unwrapped.  They were so excited!  That got so many wonderful things.  Thank you all for helping make that happen!  We hope you all had a very Merry Christmas as well.  Lindsey was so cute this year opening her presents.  She opened quite a few of them and of course wanted to play with each one as she opened it.  Then she got tired of opening and just wanted to play.  I don't blame her!  She got a lot of great stuff!  Thank you again!  Everyone has been so wonderful to our family!  Thank you again for keeping us in your thoughts and prayers! 

 Well, Lindsey is still not back on track yet.  She just doesn't seem to want to eat or drink anything.  She is currently in the Oncologist's office here in Knoxville, TN getting another IV to keep her from getting too dehydrated.  (Woke up with a dry diaper.)  Mom did say that she was eating some crackers, cookies, etc. at the doctor's office this morning so maybe her appetite is finding it's way back.  (Although she has always been more of a picker/grazer than a big eater.)

So, hopefully she will start eating better today.  It is very important that she gets more nutrition so that her liver regenerates as much as possible and all of the major regeneration happens in the first six weeks or so after surgery.  We will keep you all updated.  Keep praying and Merry Christmas!

Update from Kristen later that night:  Well what I thought was going to be a quick check up at the Doctors office turned into a 6 hour visit.  I tell you we really missed that place for the 2 weeks we were gone!  When we got to the office at 8:00 am Lindsey didn't have much of a wet diaper from the entire night, so they decided to give her an IV.  They gave her a couple hours of fluids.  (She and I were both so exhausted that we both fell asleep, it helped time go by.) Then after all the fluid they gave her they really wanted her to have a wet diaper before we left.  Well she just would not cooperate.  We waited and waited and waited.  Then finally the doctor said we could go home because she was sure Lindsey would have to have a wet diaper soon.  So we pack up and are getting ready to leave and Lindsey must have heard the doctor say she didn't need to wait on Lindsey anymore.  I think I heard Lindsey let out a sigh of relief and say, "Whew, I can go now" and fill her diaper to the rim.  She is a little stubborn (She gets that from her Father) and likes to do stuff at her own pace!  So we headed home.  Lindsey ate great the rest of the day.  She has until Saturday to start eating really good, or she gets a feeding tube!  I think she should start doing much better now that we are home!  Yeah!  Home!  My bed!  My pillows!  My shower!  I love being home!  No nurses to wake us up every couple hours to take Lindsey's blood pressure and temp!  Thank you all for your prayers! 

December 21st, 2006 -- Lindsey

is HOME!

 Yesterday is pretty much just a blur.  It was a difficult day.  I know the nurses thought they were only taking care of Lindsey, but pretty much ended up taking care of all 3 of us.  Jeff and I are feeling much better today.  Lindsey is still not eating much and still has diarrhea.  They were not sure if they wanted to send us home or not.  Jeff and I felt that she would probably eat much better at home.  She is very picky and there was not much on the menu as far as the hospital food goes.  So our Doctor called the oncologist and our pediatrician in Knoxville to let them know what was going on, and then finally agreed to let us head back home.  We have to go to the doctor first thing in the morning for a check up, and we have to monitor her in's and out's.  (Make sure she is eating, and has enough wet diapers).  If her eating does not improve by Saturday they will most likely put a NG tube in her nose.  We will have to monitor her for fever and make sure she does not get dehydrated, otherwise we have to head back to the hospital.  He said she will be at a great risk of dehydration right now.  She needs to start eating and get plenty of calories to help her liver re-generate and the rest of her body to recover from this major surgery.  Wouldn't you know she sat down and ate her mashed potatoes and chicken noodle soup shortly after arriving home.  It wasn't too much, but it was more than she has eaten in the last 4 days.  So we arrived home at about 7pm.  We didn't tell the boys we were coming home.  As we pulled into the driveway we called them on the phone to tell them goodnight.  Then we went to the front door and rang the doorbell.  They were very surprised.  We are glad to be home and I am looking forward to sleeping in my own bed!  Lindsey is such a bed hog!  I had to share a hospital bed with her and she likes her half right in the middle.  At least now that we are home she takes the middle of a king size bed, so I get a little more room!  I am going to put a couple new pictures of Lindsey on the pictures page.  One will be of her belly.  I will write more later.  Just wanted to let everyone know that we were back home and it feels great!  Thank you all for your thoughts and prayers!

One more thing... The lost pages that I was asking about... Well I now have them.  I am just about in tears.  My dear cousin Stacey sent me a beautiful scrapbook today and it had many pictures of Lindsey and all my updates from the website!  I will cherish it forever!  It is so beautiful!  It means so much to me.  She did such a wonderful job.   Here is her little note, I think it says it all, "Kristen, Just thought you may want a copy of your online 'diary' to look back upon one day and say God is Good.  I always think we have no idea what God wants to do with us until we can look back and see what amazing works He's done.  May this be your 'footprints' in the sand. Love Stacey" The front cover says Precious Miracle Angel.  Thank you so much Stacey!  I am so happy!

Lindsey was released last night at about 6pm.  That left us looking for a 24-hour pharmacy and a place to sleep.  As we were loading our stuff into the car we got a call from the Ronald McDonald House stating they had a room available for us.  What a relief.  We also found a pharmacy and got her pain medication filled.  Her last dose of pain medication was 8 pm yesterday, but right as we were getting ready to leave she starting getting fussy so we had them give her another dose right before we left at 6pm.  We got to the RMH at about 8pm and got all checked into our room.  Jeff and I had not eaten dinner and were told we were not in the best of neighborhoods so we really did not want to wander outside this late at night.  Luckily we found some leftovers in the fridge at the RMH.  We didn't get to bed until about 11 pm.  Lindsey was having a great night and slept until 9am.  Wooohoooo.  It was great, no nurses waking her (and me) up trying to take her temp, and get her vitals.  Then she woke up and our day began.  She has not had such a great day.  Poor little girl has not felt good all day.  She woke up with diarrhea and has had a belly ache all day.    She vomited once this morning.  We had to take a stool sample to the hospital and have them analyze it.  We should know more tomorrow.  We hope that it is nothing other than her body just trying to get rid of all the different medicines that have been put in her body the last few days.  She is not running any fever, so this is a good sign.  Our only concern now is dehydration.  The doctor wants us to give her pedialite.  Jeff went to the store and bought all different flavors.  The first one made her gag, and almost vomit, the second one she just turned her nose up at it.  He did get some of the pedialite popsicles that are in the freezer right now and we hope she will go for those.  We had a very busy day dealing with her plus trying to get our laundry done (had to wash the bed sheets a couple times thanks to Lindsey), and also trying to get our room aired out! (Stinky little girl)  We hope she feels better in the morning.

I have not had much time to update the website so most of them have been short and sweet.  There has been one thing I have wanted to post.  It is about Our Lady of Guadalupe.  As most of you know Lindsey's surgery was on December 12th, which is the Feast of Our Lady of Guadalupe.  A friend from church shared her story with us about Our Lady of Guadalupe and it just touched my heart.  I knew once she told me about her story and that Lindsey's surgery also fell on the feast of Our Lady, that it was going to be a good day.  Plus I just kept getting nice reminders from Our Lady.  The most significant was when I pulled the car into the parking garage at the Cincinnati Children's Hospital the night of December 11th.  The first thing I saw was a painting of none other than Our Lady of Guadalupe on the back of a pick up truck.  I got goose bumps all over.  What a wonderful sight to see as I pull into the hospital on the eve of Our Lady's feast.   I know that our Dearest Mother definitely interceded for our Darling Lindsey in the hospital on December 12th.  Then last night at 6:00 pm on Sunday December 17th as we are leaving the hospital we stop at the Welcome Desk before exiting the hospital to ask about our parking pass.  Can you guess what the lady behind the desk had on her shirt?  That's right, she had a pin of Our Lady of Guadalupe on her shirt.  How wonderful.  I felt so blessed.  Thank you Dearest Mother!  I told the lady that I loved her pin and it meant so much to us.  I then told her that Lindsey had major surgery on the Feast of Our Lady of Guadalupe.  The first thing we saw as we entered the parking lot, and the last thing we saw as we left the hospital was absolutely beautiful, thank you Our Lady of Guadalupe.

 Another great day!  Yesterday day Lindsey was able to leave her room and go to the playroom for a little bit.  She had a great time.  She played from about 3pm to 4pm.  She had some wobbly legs, but other than that she did very well.  She had a great evening.  Her pain medication was prescribed for every 4 hours until 1:00 pm yesterday.  From that point on it is now to be given as needed.  She did not have another dose of it until 8:00pm last night.  She is doing very well.  She had a very good night.

Today she is feeling very good.  They unhooked her from her IV at 9:00 this morning.  She is free.  We went to the playroom from 10:00 am and played until 11:30 am.  She had a lot of fun.  She played ball and she played with the baby dolls and some other toys like ones she has at home.  Then she took a little nap.  We went back to the playroom from 2:30pm until 3:30 pm.  She painted for the very first time.  She really enjoyed it.  She had paint all over her hands and only a couple spots on her clothes.  She did a good job.  Then she played with a little baby doll and had a little doctor's cart that she was pushing all over.  We might just have to find one of these carts.  She had so much fun with it.  Then she played with some trains, and danced to some music, and played basketball.  She is walking much better today.  She has not had any pain medication since 8:00pm yesterday.  She is feeling very good.  It sounds like we may get to leave today!  Yeah!  Also Lindsey has learned a new word while in the hospital, she now says "Beep, Beep".  I thought that was very cute!  Thank you all for your continued prayers.  Lindsey is doing so well!  We hope to be back home soon. 

 Lindsey had another good evening.  She actually played with some toys for a little bit last night.  She slept pretty good until about 6 am when she had her first BM since surgery.  This required a full bed change.  Then she was right back to sleep.

At 9:30am they removed her JP tube.  She did very good.  They also removed the pulse ox monitor from her toe and they unplugged her from all the monitors.  She still has the leads on her belly so they can hook them up and check her heart rate and breathing as needed.  She is a happy girl.  She is almost free.  The only thing holding her back now is her IV.  She is feeling much better.  She had a little chicken noodle soup for breakfast and we hope her appetite continues to improve.  She sat up in the chair for a few minutes today.  She now wants to get up and walk around.  Maybe they will let her wonder a little this evening.  We will have to wait and see.  We might be released from here tomorrow.  We are looking into getting a room at the RMH, but there is a waiting list.  I believe the doctor wants us to stay in the area until next week.  It all depends on when she get released.   

Thank you again for your prayers and support.  Please read yesterdays post about missing some of the updates.  I really hope someone can help me with that!  Thank you again.

We were finally moved out of the ICU at about 9:30 last night.  It is not quite as noisy on the 5th floor as it was in the ICU.  Lindsey (and mama) slept a little better.

Yesterday Lindsey was a little tachycardia.  Her heart rate was in the high 160's low 170's.  Today it was much better.  She was in the high 130's low 140's.  Lindsey spent most of the day today catching up on some much needed rest.  She at a little chicken noodle soup for dinner, but not too much.  They tried to get her to drink some pediasure, but she was not too fond of it.  She did drink some milk and water. 

I am very sad right now.  I just noticed that of my updates are missing!  I don't know what happened to them. They are the very first posts from when Lindsey was first diagnosed.  I have contacted our host and their backups are disabled right now so we cannot get them back.  I am praying that someone printed our updates or copied them to send out in an email.  If you have the updates from September 8th to the 13th please let me know.  This is something I will never be able to get back.  I will not be able to express again how I felt those first few days when I was told my baby has cancer.  I really hope someone has them for me. I had never thought about printing them or making a back up of them.  Please, please see if you have them and let me know.  Thank you so much! 

 Lindsey is still recovering well.  She is taking her pain medicine orally and she is breast-feeding and drinking milk and water.  She still isn't up for eating solids yet and she is in a lot of pain trying to get used to taking oral pain medicine only.  She also isn't sleeping well but she seems to be progressing well.  Her doctors are happy with her progress.  The surgeon removed the bandage from her incision.  He said that it looks very good.  There are steri-strips across it that will fall off on their own. 

We also got a report back from the pathologist with some great news and some not so great...  The pathologist cannot find any cancer cells near where the surgeons made the incision to remove the tumor which means they should've gotten it all out.  However, they also found a mixed histology in the tumor which means that the tumor is not pure fetal histology.  This means that Lindsey is not out of the woods yet.  She will definitely need more chemotherapy and with the mixed histology there is an increased risk of recurrence.

So, we will continue to pray and take things as they come.  Please keep the prayers and support coming.  Thank you.

 Lindsey is still in the ICU.  Last night was a very long night for baby Lindsey, Mama, and Dada but overall things went as well as we could hope for.  This morning the doctors removed all of Lindsey's IV and IA lines as well as the tube that went down her nose into her stomach to keep her stomach clear.  (This was Lindsey's least favorite thing.  She kept trying to get it out.)

This morning she is doing really well.  Now that she has all of the lines taken out (she still has her epidural and fluids going into her broviac) she seems much happier and more comfortable.  Mama was able to nurse her this morning and she was able to keep that down well, which is a step in the right direction.  Now we wait to see if she can hold down foods and oral medicine, wait to see if her pain can be managed with oral medicines, and wait to make sure her bowels, etc. are working properly then we may be able to get moved out of the ICU to a quieter and less busy area of the hospital.

So far, so good.  She is doing fantastic!  Thank you Lord.  Keep up the prayers and God bless.

 Lindsey is out of surgery and she is getting settled into the ICU now.  We are waiting to hear from the ICU so that we can go to her room and be there with her when she comes around.  We decided to go ahead with the epidural so that the pain associated with the procedure should be easier to manage.

We met with her surgeon and he said that things went as well as they could've hoped for.  They were very happy with the margins that they got.  (Margins are the amount of healthy tissue surrounding the tumor that they could cut into to try and make sure that they get all of the cancer out and don't leave any behind.)

As usual she was not the "typical" case for the surgeons.  Her anatomy is atypical which means that once again she made the doctors work to get things accomplished.  Normally her gall bladder is located just below the right lobe of the liver and it was being removed as well.  Hers was located on top of where they intended to cut the liver and located more toward the left lobe which caused issues.  Then, the liver's arteries and bile ducts normally come up to the liver and split in half and one branch supplies blood to each side of the liver.  Some of Lindsey's did that, others split into three and other veins, etc were coming from one lobe across to the other supplying blood.  However, even with the added difficulty the surgeon was very happy with the end results.  So, things are going very well at this time.  Keep up the prayers.   

Lindsey had her room makeover and it is just unbelievable.  Be sure to check out the pictures on the pictures link.  A big thank you to Nanny's and Special Spaces.  They did a phenomenal job. 

All I can say is WOW!  It was even better than I could have ever imagined!  They went above and beyond!  We were supposed to be out of the house by 8:30 am.  Lindsey decided she would like to sleep in this morning.  (She usually does this, if we need to be somewhere first thing in the morning she likes to sleep in, if we have no where to go she is up at the crack of dawn.)  So we didn't leave until about 9 am.  Lindsey, Jeff and the boys checked into the hotel as I went to the Spa.  I had a wonderful day.  I had a pedicure, manicure, and a wonderful massage.  I was going to get my hair done, but the place was all booked for the day.  I then went to the hotel to check in on the rest of the family.  They had gone out to breakfast, then went swimming, then went out to Lunch.  They also had a great day.  Lindsey spent the day in the hotel room with Grandma and Grandpa.  She had fun playing hide-n-seek in the closets and also had a lot of fun on the treadmill.  We were anxiously awaiting the call that we could return home.  It finally came at about 6pm.  We were so excited.  We got home and walked in to a house full of people.  So many people came to help, and we thank each and every one of you!  The first thing we saw was the kitchen table.  It was absolutely beautiful.  It was set up so nice, and there was a wonderful full course meal waiting for us.  Now up to the room.  I can't wait.  We all had to close our eyes.  We all get into the room and I hear music playing.  I couldn't wait to see the look on Lindsey's face.  She didn't have her eyes covered so she saw it before all of us.  Then we got to open our eyes and I really think my jaw hit the floor.  It was breath taking!  I could never have imagined her room would look like this.  It was just beautiful.  Lindsey was given a remote control.  She pushed the button and the lights around the wings of the butterfly lit up.  Oh she was in heaven, she loves to push buttons.  There were butterflies everywhere we looked.  They sure thought of everything.  That night I must have went in and out of the room at least a dozen times.  Each time I entered I noticed something that I had not seen the first few times I had gone in there.  Absolutely Amazing is all I can say!  I don't know how we will ever thank everyone that participated in this.  Lindsey loves her new room!  Thank you so much!

 I cannot believe our precious baby girl is already a year and a half old.  Time does fly when you are having fun.  Lindsey is our beautiful ray of sunshine.  She almost always has a big beautiful smile on her face.  I feel so lucky to have had 18 wonderful months with this beautiful little gift from Heaven Above.  I pray that God continues to bless me and allows me to raise this beautiful little angel that He has sent to me.  I thank God each and every day for this wonderful gift He has given me and ask Him for many more wonderful years with her.  

We had our pictures taken tonight.  We had to go to the studio when there would not be a lot of people, so tonight was the night.  It was getting late, and Lindsey was ready for bed.  We got a couple quick pictures but that is all she would take.  She refused to wear the pretty little headband with her pink outfit or the cute little hat with her red outfit.  Oh well, bald is beautiful, isn't that what they say?  I actually saw a shirt that was very cute, instead of bad hair day it said "No hair day".  She isn't completely bald, so I didn't buy the shirt.   I posted a new family picture on the "about us" link.  I also posted her new 18 months pictures.  I wish she would have given us a couple more smiles, but when she is done, she is done.  We will take what we can get.  I am glad we at least got a couple cute pictures.  I think the ones that we did get are just adorable.  The again I don't really remember any pictures of this precious baby girl that I didn't like.  I hope you all enjoy the pictures.  Thank you again for your prayers.  There are 7 days until we head up to Cincinnati and 8 days until Surgery.     

 We went to Cincinnati Children's Hospital and met with Dr. Tiao (the surgeon that will be doing Lindsey's surgery) and went over everything.  He was very nice and most importantly Lindsey seemed to take to him right away.  He basically gave her a quick once-over and we went over the upcoming procedure and what to expect.

We will be admitted on Monday, Dec. 11th to prep her for surgery.  That will basically consist of what they called a bowel prep.  Sound fun huh?  They will have to move her intestines and some other things out of the way to do the resection and so they try and get everything cleaned out as best they can beforehand.

Basically, we will be looking at about a 7-10 day stay in Cincinnati at the least.  They will not only be removing the right lobe of her liver, they will remove her gall bladder as well.  This we did not know but I guess it is standard.  The incision will be a lengthened version f her current scar from her biopsy and will go stretch from just on the opposite side of the middle of her stomach all the way down to her right side just under the rib cage.  They will have to leave a drain in her for a few days and she will stay in the ICU for 24 hours minimum.  After that she may be ready to be released within 4 to 5 days from the hospital but we will have to stay in the Cincinnati area for about 10 days before we come home to make sure there are no issues. (Side effect can include Biloma, infections, bleeding, bile duct complications, intestinal injury, and I am sure a few more not mentioned.)

The surgeon showed us her CT scan and how the tumor has moved away from the troublesome areas and he seems very positive about her making fine recovery.  We should know more about the tumor make-up and if it looks like the surgeons got it all within about 48 hours.  The procedure in its entirety will consist of 5-6 of the longest hours Mama and Dada have ever lived through.

So, with that said, please continue helping and continue praying.  We may be coming to an end of a very scary journey.  Thank you.

 I hope everyone had a wonderful Thanksgiving.  We had a nice quite dinner with the family including Grandma and Grandpa.  When we were going around the table asking everyone to say what they were thankful for, I love Casey's reply.  Casey said he was thankful for Advances in Medicine.  I thought that was very good.  We all had so much to be thankful for not just on Thanksgiving, but each and every day.  I give thanks to God each and every day for giving us another wonderful day with Lindsey and the rest of the family, and I pray that he gives us many, many more. 

Lindsey had a check up today.   Everything looks great.  Her blood work all looks very good.  We left the clinic today and told everyone that we would see them in January.  That is a nice feeling, although you kind of get use to going there 2 times a week, and sometimes even 4 times a week.  Lindsey had a dose of Vincristine and as they were giving it I prayed that it will be the last dose she will ever need.  She is already feeling the effects of it today as she was very fussy and I could tell she was sore and uncomfortable.  I know it will be a long night. 

I was standing in line at Wal-mart the day after Thanksgiving and I was looking through People magazine as I was waiting.  I came across a picture of this beautiful bald little girl.  I saw it was an ad for St Jude.  I don't know if there has always been this much advertisement about childhood cancer, or if I was just blind to it before.  I almost started to cry, right there in the check out line.  The add said something to the effect of (I don't remember exactly, but I think you will get the picture) "Most children just need a band-aid to feel better, Children with Cancer need a cure."  If that just doesn't get to you right smack dab in the middle of your heart.  Wow.  Then I saw another add today on Tv that said give to St Jude because of all the healthy children in your life, and help those that are not.  Again I don't remember exactly but it said something like that.  I know I have some of the return address labels sitting on my desk right now from last year, and I never even sent in my donation.  I thank God for opening my eyes.     

A friend told me about a Christmas Ornament that she saw at Target. It is a butterfly and has a yellow ribbon that says Children's Cancer Research Fund.  10% of the purchase price will be contributed to the Children's Cancer Research Fund.  So I had to go and get one.  It is beautiful.  Not only that, but I love what it says on the back.  It says: "The butterfly represents the changes a child experiences while undergoing cancer treatment.  From the cocoon of treatment and isolation, a child emerges- beautiful and ready to take flight."  Wow, that just really hit home.  I think it is absolutely amazing that Lindsey's room was decorated in butterflies before she was even born.  Most of her clothes have butterflies on them, even her shoes.  Plus, she has so many butterfly toys, blankets, books, you name it and it has a butterfly.  This is another sign that Lindsey is going to emerge from this cocoon of cancer and be as beautiful as ever and ready to take on the world!   

 Well the Doctor just called and the AFP results are in.  Just a recap- at Diagnosis Lindsey's AFP was 208,000.  Then in October the AFP went from 208,000 down to 103,00.  On November 2nd her AFP was down from 103,000 to 33,000.  Today the results show her AFP is still going in the right direction and went from 33,000 down to 10,000.  Like the doctor said it really is not going to change anything because we are going to surgery in less than 3 weeks!  (But it is still nice to know that the AFP is moving in the right direction!) 

Also I wanted to give a big thank you to everyone that helped with our Gold Canyon Candle fundraiser. Thank you to everyone that helped sell them and thank you to everyone that bought some!  I am happy to report that it was a BIG success.  We sold 285 candles and Lindsey will receive $1900 from the fundraiser.  Not only that, but Gold Canyon is going to donate an additional $500 to Lindsey.  This is so wonderful!  Thank you again for all your help with this fundraiser!  I hope you all have a wonderful thanksgiving.  I know we can all have many things to be thankful for, especially for answered prayers!  Thank you again and enjoy your turkey!

Lindsey had another check up.  She received another dose of Vincristine, and had some lab work done.  The Dr said everything looks great.  She is doing very well.  She got a little scratch on her face during the night and it was really red today.  The Dr thought we might have to start some anti-biotics, but since her counts looked so well today we are just going to wait.  We will watch the scratch and see if the area that is red gets any larger.  She still has a little runny nose, but other than that she is doing good.  They did an AFP check today and we might not have results until next week due to the holiday.  The Dr said the AFP is not really going to change anything regardless if it goes up or down, we are still heading to surgery in just about 3 weeks!  YEAH. 

We also have set a date for Lindsey's room makeover.  It will be December 9th.  I can't wait to see what they come up with!  How exciting!  I will be sure to post pictures.   The room is being done by Special Spaces.  You can check them out at www.specialspaces.org.  The project is sponsored by a wonderful day care center in Knoxville called Nanny's.  A big thank you to everyone at Nanny's.  

Also Lindsey received her Song of Love.  You can read more about songs of love at www.songsoflove.org. They did a wonderful job!  You can hear her song at www.songsoflove.org.  You click on "Family and Friends Song Download" Link and type the last name of Long in the "Childs Last name" field and the number 10220 in the "Childs Record Number" field.  There is a small donation of .99 cents to download it.  If you can do it, please do.  This is a absolutely wonderful organization.  If you could all see the huge smile that this song puts on Lindsey's face you would gladly pay .99 cents to give back to Songs of Love.  Also if you know another child in need please refer them to Songs of Love.  I hope you enjoy the song. 

 Lindsey had a check up this morning and everything went fine.  She is feeling pretty good.  She has a little runny nose, but it is not too bad.  She did not have any more vomiting.  We will have another dose of Vincristine on Monday and we will check her AFP again.  I can't wait to see how far it has gone down this time!  I put some new pictures on the picture link.  They are from when Lindsey was in the hospital on Monday.  She had so much fun playing in the closet.  She also played in the little pink hospital buckets they give you.  She is such a cutie! 

Many have asked about a wish list for the kids.  They have each made one at Walmart.com.  You can search under my name Kristen Long and it should show all the wish lists. 

Also remember to check out the website www.mychildscreation.com.  There are many wonderful Christmas ideas for friends and family.  When you check out you can put the coupon code of Lindsey Long and you will receive a 5% discount and 20% of the sale will go to Lindsey. 

November 15th, 2006

--Current round of chemo has begun 

--Date set for visit to surgeon and for her SURGERY

 Lindsey is back home from the hospital.  She is doing ok.  She started running a fever yesterday morning and woke up with a runny nose.  She also did manage making quite a lot of work for mama, dada, and the staff at the hospital by getting sick a number of times last night.  Overall, she did well but she is definitely feeling the effects of this round much more than the previous ones.

 We are scheduled to meet with the surgeons in Cincinnati, OH on Wednesday, November the 29th and Lindsey is scheduled for her surgery as well.  LINDSEY'S SURGERY TO HAVE THE TUMOR REMOVED IS SET FOR DECEMBER THE 12TH!!!  Keep those prayers going the miracle is almost completely realized.  Thank God and thank all of you.

We are in the hospital for Lindsey's 3rd round of chemo.  Her oncologist came to check in with us and said that the results from the GFR look good.  He said that her kidneys are actually working better than they were the first time they tested them.  So this is more good news for Miss Lindsey.  He also said that he spoke with the surgeon in Cincinnati and he would like us to go up after this round and have an MRI done to get a better view of the tumor.  We are looking at heading up there the week after Thanksgiving.  Maybe we will get our ultimate Christmas present, a cancer free baby girl.  I guess we will have to wait and see.  We need to get through this chemo without any major bumps.  Thank you for continuing to pray for our beautiful little Lindsey. 

On more note if you have not ordered your candles yet you only have until this Friday the 17th.  To read more about the candles see the post for November 6th.  The candles are from Gold Canyon and they are donating 40% of all the sales to Lindsey.  This will help out a great deal.  Thank you all.

We will continue chemo at this time.  On Monday Lindsey will begin her third round of chemo.  We are not sure at this time if we will do another CT and BAER after the 3rd round or if we will just do the 4 rounds then review for surgery.  We continue to pray that Lindsey handles the chemo very well and we pray that the chemo continues to attack and destroy the tumor.  We give thanks to God for the strength to make it this far and pray that He provides us with continued strength as we continue on our journey.  Thank you to everyone for your support!  

Also be sure to read the Update on November 6th about the Candle fundraiser that we are doing for Lindsey.  Thank you to everyone that has already ordered!  I will let you know how we do. Thanks again.  

The doctor's appointment went fine.  Lindsey just had some lab work done.  All her labs looked good.  Her hemoglobin is now a little over 11, it has been just at 8 the last couple weeks.  The doctor said everything else looked good as well.  

The results of the Hearing test are wonderful as well.  As of now, Lindsey does not have any hearing loss.  This is wonderful news.  We thank God for more answered prayers!

Now we are just waiting to hear which way we are to go on the next part of our journey.  We pray for Gods guidance.  We are scheduled to begin the third round of chemotherapy on Monday the 13th.  We hope to hear from the surgeon tomorrow with a decision on whether or not he wants to do the surgery now, or wait until we do more chemo.  We will update as soon as we know something.  Thank you all for your continued prayers!   

 Two months ago today Lindsey's tumor was found.  Today (which seems like a year later) we received good news in the form of Lindsey's preliminary CT scan results.  The scans once again show no sign of the cancer spreading and it also showed that the tumor has responded to the chemotherapy.  The tumor has had a nice, uniform reduction and it has gone from what was a 9-10 centimeter mass to a 5-6 centimeter mass.  This was fantastic news.  The results have been sent to the surgeons in Cincinnati, OH for review.

 This morning we took Lindsey in for her GFR test at UT Medical Center.  First we made a stop to the clinic at East Tennessee Children's Hospital and had them insert Lindsey's Foley catheter and put in her IV (which even they had to try 4 times to get).  Then we were off to UTMC for the testing which was uneventful.

 Now we play a waiting game.  We should have the official final results from the CT scan, the opinion of the surgeons on the progress on shrinking the tumor to make it resectable, the results from the BAER (hearing test), and the results from the GFR (kidney function test) by the end of this week.

 Once all of the results are in we will decide, along with our doctors, on our course of action.  If the surgeons say let's go then we will do more tests (MRI) and then possibly move forward with the surgery.  If the surgeons aren't sure, and we find from the results of the tests (The GFR & BAER) that Lindsey is handling the chemotherapy well with little-to-no ill effects, then we will likely continue with two more complete rounds of chemotherapy.  If we are at a middle ground of indecision where the surgeons are still hesitant but the chemo is having ill effects than we can only pray and take the trail that the Lord shows us.  Either way things are looking positive for the moment.  Overall today is a good day and for that we thank the Lord.  Continue to pray and lift us up with the support of your love, kindness and prayers.  You all have helped give us the strength to come this far and for that our family will be forever grateful.  Thank you all and God bless all of you.

 The doctor's appointment went well.  Lindsey's white blood counts are coming back up.  This is good news.  Her hemoglobin is still hanging around at about 8, which is borderline for a transfusion.  Since she is having a GFR test on Wednesday and they usually take a bit of blood for this test, the Dr decided to go ahead with he transfusion.  They were getting the blood ready and it tested positive for some sort of infection or something.  He said it would normally not be a big deal but we were going to pass on that batch of blood.  So now she will have the transfusion in the morning.  Other than that not much new here.  Casey had a soccer tournament this past weekend so we spent most of the time at the soccer field.  After the games were over the boys (including da-da) played around on the soccer field shooting goals.  Lindsey was running around with them as well.  She made it a little hard to play since she would walk up and pick up the ball and take off the other way.  It was really cute.  She looked so small on that big soccer field. 

On another note we are doing the candle fundraiser that I spoke of earlier. The candles are from Gold Canyon.  They are giving 40% of the sales to Lindsey.  I think this is wonderful!  Thank you to all that are helping me sell them, and thanks to those of you that bought some.  I will be selling them until next Friday the 17th.  If you would like to purchase one please let me know.  There are 15 scents and they come in 3 different sizes.  The 26 oz is 20.95  tax and burn time is 175-200 hours.  The 16 oz is $17.75  tax and burn time is 120-140 hours.  The 8 oz is $13.75  tax and burn time is 50-65 hours.  Lindsey's Grandma had a wonderful idea!  We can all buy one of these candles to help Lindsey, and then we can all light them on the day she goes in for her surgery!  Not only do you get a great candle, but it also helps Lindsey.  Thank you to everyone!   

Remember tomorrow is Lindsey's CT Scan.  She will also have her hearing test to see if the Chemo is affecting her hearing!  We pray that the tumor is shrinking and it is small enough to have the surgery now!  We also pray that she does not have any hearing loss.  For this we pray. 

 First I will say that we do not have the results of the AFP yet.  Lindsey has an appointment in the morning at 8:30am.  I hope they have the results by then.

Next I want to thank everyone that made a donation towards the Cricut Machine Giveaway.  We raised $1207.  This is awesome!  Thank you to all.  We had quite a few names in the hat and the lucky winner is JoAnne Harnden.  (I think she had a little extra luck pulling for her today, as it is her birthday.)  Happy Birthday and Congratulations JoAnne.  Thank you all for your donations.  It is helping so much!

 The doctor appointment went well.  Lindsey is still doing very good.  The doctor said she might need a blood transfusion on Thursday.  We should hear the results of her AFP by Wednesday.  I can't wait!  Her AFP started at 208,000 and went down to 103,000 with the first round.  We really hope it has gone down quite a bit!  I will let you know as soon as we hear something.  We had some personalized M & M's made.  They are pink and purple and they say "Pray for Lindsey" and "LindseyAnn.net".  We took them to the doctor's office and they really enjoyed them.  They are all so wonderful we just wanted to do a little something for them! 

We carved our pumpkins yesterday.  I will try to get a picture posted.  They turned out really cute.  Jeff and I were getting ready to carve our pumpkins and I looked at him and said, "I hope we don't have the same idea" He said. " I am going to carve a gold ribbon".  We had the same idea.  He said I could do the ribbon and he decided to carve a goldfish cracker.  Lindsey loves to have goldfish crackers with her Chicken noodle soup.  The boys all had their own designs and they all look very good.  Also I have to tell you about Lindsey and her trick or treat bucket.  Jeff bought her a princess trick or treat bucket.  She found it in the grocery bag and pulled it out and walked around with it on her arm.  She went right to the cabinet and proceeded to take a couple cans of chicken noodle soup out of the cabinet and put them in her bucket.  It was so cute.  So I guess if Lindsey knocks on your door and says Trick-or-Treat, she would be very happy with a can of chicken noodle soup.  She makes us laugh every day.  She is such a cutie and we are so thankful that God chose us to care for one of his most beautiful
Angels.  Thank you all!

 We got home from the hospital at about 10:30 last night.  We were all glad to sleep in our own beds.  Lindsey had a good night.  She slept from about 11:30 pm until about 10:30 am.  She is feeling pretty good.  Thank you all for your prayers.

When we got home last night Lindsey had a special delivery from Cody's Wheels of Hope.  They are a non-profit organization that accepts donations in order to buy bicycles, riding toys and safety helmets for children with life-threatening diseases. If a child is too young for a bicycle, another type of riding toy will be given. Please view their website for more information.  http://www.cwoh.org/  Lindsey received an adorable little baby stroller.  We opened it first thing this morning and she absolutely loves it.  See the photos page for a picture of her with her new stroller.  Thank you so much CWOH!

Also many friends and family members have asked where to send a donation.  So we have now set up a secure PO Box for donations to help with Lindsey's care.  You can mail donations to:  

PO Box 7071
Knoxville, TN 37921

To our angels on earth that are sending donations to help with Lindsey's care, don't be surprised to find her little smiling face in your mail box one day soon.  Because of you, our lives are a little less stressful.  God Bless You.  

October 23rd, 2006 9:30pm--Doing Well

 So far so good.  We started the day at 8am in the doctor's office.  They changed the caps on her broviac and did some blood work.  Then we were sent to the ICU.  They started her fluids at about 9am.  She received them for about 4 1/2 hours.  At 1:30 pm she was given Zofran, an anti nausea medicine.  Then she got a dose of Vincristine at 2:15pm.  She was also given some benedryl and some steroids then they started the Cisplatin at about 2:30 pm.  We are about 1/2 hour into the Cisplatin and so far so good!  She is hooked up to a few monitors that will help keep an eye on her.  Everything is looking good.  She will receive the Cisplatin for the next 12 hours. 

She was being so very cute and showing off how smart she was.  She took the stethoscope off the end of the bed and put the earpieces around her neck, then she took the bottom part and put it to her chest.  It was way too cute!  I'll post pictures later.  Then she took the thermometer and stuck it in the top of her shirt and then pushed some buttons on the machine to take her own temperature!  She is just way too smart!  I have pictures of that too! 

Thanks be to God for answering our prayers!  May He continue to answer them.  Keep sending those prayers!  Thank you all.  I will try to update a little later.

 Today was a great day.  I put a new photo of Lindsey hiking in the Great Smokey Mountains.  Jeff has some friends in for the weekend from all over the US.  They are guys he us to be in the army with.  They wanted to see the Smokey Mountains so we headed up there for a little hike.  It was a little cold, but other than that it was very beautiful.  Thank you to our friend Nate, Lindsey was hiking in style.  Nate bought Lindsey the awesome backpack that you see in the picture.  (Thank you Nate!)  We were not sure how she was going to do riding in it, but she fell asleep about 5 minutes into the hike and almost slept for the whole way.  It was a beautiful day and Lindsey loves the outdoors.  We all had a great time.  

Monday is going to be a big day.  We will go to the doctor's office at 8 am.  They will see her then send us up to the ICU.  She will have to receive 4 hours of fluids before they can start the chemo.  We pray that she does not have an allergic reaction to the chemo, that the chemo goes into her body and goes right to the cancer and destroys it!  It would be great if this was all the chemo she would need.  We pray that the tumor shrinks enough to make the surgery possibly now.  This would be so wonderful!  I thank you all for your continued prayers! 

 Today Lindsey received her third dose of Vincristine in this first round of chemo.  She seems to be handling it pretty well but it does cause her some discomfort that makes her fussy and clingy during the day and she doesn't sleep well.  Her blood counts have dropped some.  She has had some drop in hemoglobin which is the most notable but the oncologist said that nothing is down far enough to be alarmed yet.

 Basically at this point we will go back in next Monday and start her next round of chemotherapy.  She will be put into the Pediatric Intensive Care Unit this time due to the fact that the last time we administered all three medicines she had an allergic reaction to something.  She will receive the Cisplatin which is what we were afraid she had a reaction to.  Our oncologist is confident that the Cisplatin was not the cause of the allergic reaction he thinks it was most likely the Kytril antinausea medicine that caused the reaction but just to be on the safe side we are going to take all of the precautions possible.

 So, Monday we will administer steroids, antihistamines, a different antinausea medicine called Zofran (sp?), and they are going to dilute the Cisplatin and give it over 12 hours instead of administering it in regular dosage over 4 hours.  Being in the PICU will allow her more active monitoring to protect against an allergic reaction if she did have one.

 So, keep the prayers going and hopefully she will go through this next round with little or no bad effects and perhaps this will be the last round of chemo needed to get her ready to go have the surgery that will be the actual cure for her.

One more thing for today.  We have an exciting fundraiser that Lindsey's Aunt Barbara has started.   She is going to "give away" a Cricut Personal Cutting Machine.  This is a pretty new machine made by Provo Craft.  If you have not heard about it or would like more information go to www.cricut.com.  Are you into scrapbooking, card making or crafting?  Then this is the perfect machine.  Or if not for you, this could really be a great Christmas Present or Birthday present for a relative or friend.  This machine normally retails for $299.99.  Barbara is going to give this machine away to one lucky person, the machine comes with the George Cartridge.  Anyone that makes a donation of $10 will get their name in a hat.  If you make a donation of $25 your name will go in the hat 3 times.  (I guess we can't really do it as a raffle so we are just going to give it away if you make a donation towards Lindsey's care).  We hope to get enough to cover the cost of the machine, plus have quite a bit extra to help with some of Lindsey's medical bills.  For as little as $10 you can help Lindsey out, plus have the possibility of getting this wonderful little "bug" as we like to call them.  Please select the contact me portion on the home page and send me an email with the amount of your donation.  I will pass the information on to Barbara, and she will contact you and let you know where to send your donation.  You can also get the word out to all your family and friends and see if they would like to make a donation.  You can also make a donation even if you are not interested in the Cricut, with the possibility of reselling it.  Just think that if you make a donation of $10, and you win you could turn around and make quite a profit on it!  Thank you all so much for your help and Good Luck to those that get their name in the hat!  I thank you in advance for your help!

 Today we received more good news!  Lindsey's AFP is heading in the right direction.  Lindsey's AFP (Alpha Fetoprotein) at diagnosis was 208,000.  Today it is 103,000.  (Normal is under 10 - not 10,000.. I mean just 10.)  So it is moving in the right direction with the little chemo that she has had!  This is wonderful news!  God is working miracles on my baby!  We continue to pray that the chemo on the 23rd does exactly what it should and attacks that tumor and shrinks it enough to make surgery an option at that time.  Thank you all for your continued prayers!  Thank you very much!

One more thing.. Have you checked out Lindsey's MySpace yet?  It is http://myspace.com/108782617.  Lindsey's cousin, Jessica made it for her.  Today I put a very cute video under the blog.  It is of Lindsey dancing with Pablo, her new Backyardigan toy.  It is so cute.  You have to check it out and tell me what you think.  She had so much fun dancing today.  I tried to put the video on this website but it wouldn't let me, or I just couldn't figure out how!

Well...  Let's just say that things did not go as well as we had hoped this morning.  Our day started around 6:00 am.  We went to the University of TN Medical Center to do the test which was scheduled for 7:45 am.  When we arrived we learned that the test medium had to be administered via IV and not through the broviak.  Then we learned that Lindsey would have to have a Foley Catheter as well.

Let's just say that the UT Medical Center staff was very nice and they seem to be very proficient with the treatment and care of adults.  However, we were not overly impressed with their prowess at treating infants.  It seemed to be one problem after another, three lengthy tries to get the IV started before it was done, a catheter that did not even work properly, and none of them seemed to know how to appropriately care for and use the broviac (cleaning, flushing, utilizing for blood draws, etc....). 

We were supposed to be done with the test and start preparing for her chemo to be administered around 1pm this afternoon.  We did not get to the hospital here and into our room until around 4pm.

So, we are preparing by taking fluids now and then we begin the actual drug administration at any time now.  (It is currently around 9:05 pm eastern.)  So, we will provide more updates as we are able.  Keep those prayers going...

 First stop this morning was to the oncologists office.  We got to hear about all the possible horrible side effects of the chemo.  I guess we were pretty prepared for most of them.  The one that sticks out in my mind is "Increased risk of developing a secondary cancer known as acute myelogenous leukemia".  Lindsey will receive 3 different drugs.  One is Cisplatin.  The most common side effects from this are Nausea, vomiting, loss of appetite, and loss of taste.  This is the one that could possibly cause the secondary cancer.  It also has possible side effects of low blood counts, hearing loss, kidney and liver damage, hair loss, changes in heart rate, blood pressure, blurred vision, mouth sores, gait disturbances, numbness in toes and fingers, weakness, seizures (rare), chills, fever, rash (rare), and wheezing, difficulty breathing (rare).  The next drug is Vincristine.  The most common side effects are pain and constipation.  Some other possible side effects are tissue irritation at IV site if drug leaks out (this wont happen since she will not be getting this through an IV she will get it through her broviac), pain in jaw, legs, arms, hands, fingers, toes, and joints, hair loss, abdominal pain or cramping, muscle weakness, numbness of fingers and toes, drooping eyelids and seizures (rare).  The last drug is called 5-FU.  Most common side effect is mouth sores.  Other possible side effects include Low blood count, nausea, vomiting, diarrhea, heartburn, hair loss, skin rash, skin color changes of hands and face and partial loss of nails, headache, minor visual changes, disturbance in coordination, chest pain, heart damage (rare), and liver damage (transient).  We had to go over all this, then sign a consent for treatment.  Right now they are planning on doing Chemo every 3 weeks.  It all depends on how well she handles the chemo if we can keep to this schedule.  They will do a CT scan after her second course is complete to see if there has been enough change to the size of the tumor to re-evaluate for resection.  If not, then we will continue for 2 more treatments and re-evaluate at the end of the 4th treatment.  I really pray that the first 2 treatments will attack the tumor and cause it to shrink enough for surgery.  I pray that Lindsey does not have any terrible side effects of the chemo.  I pray for strength to get me through this, watching my little girl receive these awful chemicals into her body.  I pray that she can still find some way to look over at me and give me one of her beautiful smiles that help me through each and every day. 

Next we went to radiology and she had a hearing test done.  She was sedated for the test.  I don't know exactly what they do, but I guess they measure her brain activity or something like that.  Anyway she did just fine.  The test took about 45 minutes.  When it was done, I don't think she was ready to wake up yet.  I think she was enjoying her nap, because she was pretty cranky when she woke up.  That only lasted long enough for us to walk from radiology all through the hospital to our cars.  (From one side of the hospital to the other with a crying child, she was arching her back and throwing her head back.. .just a little fit)  Once we were to the car and we turned on her new movie Little Einstein's she was happy.  In the movie you have to pat your legs to get the rocket ship ready for take off, then throw your arms in the air to blast off, she was so cute and did just that.  It was so cute to see her pat her legs and put her arms in the air, this was the first time she had done that.  Where was my camera?  At home.  Darn.  That pretty much sums up our day. 

Please check out our Links page.  We have added a link for www.mychildscreation.com.  Many of you have commented on my awesome photo bracelet that I wear.  Well the owner of this site is the one who made it for me.  We just met Jed (the owner) on ebay a week or so ago.  He was really touched by Lindsey and has reached out to our family.  Thank you so much Jed.  You would not believe the big box full of goodies that he sent to us.  It was so wonderful.  The items are just beautiful.  Take a look.  He is going to donate 20% of the sale to Lindsey.  How wonderful is that?  He is also going to give you a 5% discount if you mention Lindsey when placing your order.  So lets see, we have about 300 visitors a day now, so if each person orders one item for $10 that means Lindsey would get about $600.  Plus you get a priceless photo treasure.  Please also be sure to thank Jed.  We appreciate all that he has done and continues to do.  Thank you Jed.   

 First we started off the day meeting with some wonderful people from Special Spaces.  Thank you so much to Pepper Marcum and Jennifer Sewell from Special Spaces.  They are going to give Lindsey's room a wonderful makeover.    You can check them out at www.specialspaces.org.  There is a wonderful day care center in Knoxville called Nanny's that is going to sponsor the project.  We are so thankful to Nanny's for reaching out to Lindsey like this.  Thank you so much.  We think this is just going to be so neat!  Thanks to Pat for telling us about this! 

Then a little later in the morning we had some more visitors, they were from Church (& come to find out also neighbors).  They are going to arrange to get some dinners for us.  This is wonderful as well.  We appreciate all that everyone is doing!  Thank you all so much.  Then we hear from the doctor and they could not get an appointment scheduled for Lindsey's kidney function test until Monday.  So we can not start chemo until after that.  We will still go in the morning to meet with the doctor to hear all the possible side effects of the chemo, and then we will have Lindsey's hearing test in the afternoon.  She will have to be sedated for the hearing test.  She seems to do ok with the sedation process.  It now looks like we will start chemo on Monday October 2nd.  We should know a little more tomorrow.  Thank you all for your prayers!  Please keep them in full force!   

 The follow-up appointment with the surgeon went fine.  He just looked at her incision from the biopsy.  It looked just fine.  Then he spoke with us a little about our next step, and tried to help with our decision any way he could. 

After a very hard day trying to decide if we wanted to head up to Ohio for an MRI, or to just stay here and start chemotherapy.  We had made up our minds a couple times, but changed each time we spoke to a different doctor.  We had asked God to guide us in this decision, whatever would be the best for Lindsey.  We had an awful day and could not get a feel for one way or the other.  One is we could go to Ohio and have a MRI done, this would give the doctor a better picture of the tumor and help him decide if he could do an up front resection.  We know this could be risky because the size of the tumor and how vascular the tumor and the liver are.  An upfront resection could prevent chemo if the tumor does turn out to be Pure Fetal Histology (PFH).  But if it does not turn out to be PFH, then she would require chemo anyway.  The surgeon in Ohio had said he did not think with the pictures that he has, that the surgery would be possible at this time.  But he did want to do an MRI to be sure.  So again our thoughts are if it is that close of a decision, do we want to risk it.  We always have that hanging there that we might be able to avoid chemo.  The other thing is we could just go ahead and start the chemo.  So finally after a long day of going back and forth and back and forth, we got our direction at about 7pm.  Before the phone rang we had basically decided that it would not hurt to at least have the MRI done.  Then the surgeon from Ohio called.  He spoke with us and asked if we had any questions, so we gave him an ear full.  He spoke with us for about 40 minutes.  He was very wonderful.  He said, "Do you want my honest opinion?" and we said "YES".  He said that he would do chemo first.  So we believe this is the direction that we were sent.  We now have chemo scheduled to start on Thursday September 28th.  We will meet with the doctor at 10:30 am for him to "scare us" as he put it.  They will have to go over all the possible side effects of the chemo.  Today is the day that Lindsey and I would have been flying home from our trip to California.

September 22nd, 2006 --A good day

 Today we went to the Zoo.  Lindsey had a wonderful time looking at all the animals and playing with some of her friends.  The day was cut a little short because of bad weather. It started to rain and since we can not let Lindsey's dressings get wet, we had to head home.  I don't think I said anything earlier, but we went to the doctor on Thursday the 21st because Lindsey was having a hard time sleeping at night.  She would do fine in the daytime, just not very comfortable at night.  I figured it was probably her ears.  It sure was.  Poor little girl had an ear infection.  She is now on antibiotics and hopefully gets a good night sleep soon!  (I could use it, I mean she could use it).  I put a couple new pictures up. (Check the About Us tab and the Photo Tab).   I hope you like them.  Thank you for all the wonderful prayers!  Please continue, as they are working! 

 Lindsey's biopsy results came in today.  The sample of the tumor taken during the biopsy shows purely fetal histology.  Without getting hung up on the medical terminology I'll do my best to tell you what this means.

We are now shopping around for a surgeon to remove this tumor without treating Lindsey with the chemotherapy drugs.  We are currently looking in Cincinnati, OH (The Cancer Center at Cincinnati Children's Hospital Medical Center) and Nashville, TN (Vanderbilt University Hospital).  If we find a surgeon that feels that they can successfully perform the operation we will have the tumor removed and studied to make sure that the entire tumor is purely fetal.  If it is then Lindsey should not have to receive any chemotherapy drugs and she should recover fully.  If there are other sub-types of cancer present upon further study then other treatments may still be necessary.  If we can not find a doctor that can do the surgery then we will have to do chemotherapy to shrink the tumor to make the surgical procedure less risky.

So, pray that we find a doctor who has been blessed with God-given talent and one whose hands, heart and mind will be guided by Jesus Christ and that they will remove the tumor and we can all wake up from this horrible nightmare.  Just keep in mind that this is a very risky surgical procedure so all of your prayers are still needed.  We will update you all with more specifics as we have them.  God Bless you all.

 

THANKS BE TO GOD!

The results show NO SIGNS of the cancer spreading.  We got our good news today!  Thank you GOD!  God is answering our prayers!  Thank you everyone for all your prayers!  This is just proof of the power of prayer!  I did want to share one thing before I go into information we received at today's visit.  I was deeply touched by how many people are out there praying for my little girl!  I thought I would share some of this information.  The very first day (9/10) we had the website up, there were 286 Unique visitors and they visited the site a total of 1036 times.  The next day (9/11) there were 430 Unique visitors and they visited the site 1535 times.  The third day (9/12) there were 671 Unique visitors that visited the site 2261 times.  We do not have the final numbers for today.  This does not even count the number of people that do not have access to the interned.  There are so many people praying for her.  This is absolutely wonderful!  We feel so blessed!  Now on to more information about today.

The CT appointment was for 8:00am.  No yucky stuff for Lindsey to drink, therefore no early morning wrestling match.  We thought they were doing a CT of the head and chest, we were wrong, it was only of the chest.  The Dr did not feel he needed one of her head.  That was good news to us.  The nurse had a little trouble finding a vein for the IV, so Lindsey was pretty upset by this.  I sang You Are My Sunshine to her to try to calm her, I could tell it helped her.  Then they gave her the sleepy juice and she was out.

 She growled at them a little bit again to let them know she was trying to sleep and they better just leave her alone.  The waiting was a little easier today as I had brought along my rosary and just sat in the waiting room and prayed.  The time seemed to go by a little faster.  Before I knew it, she was back in my arms.  She kept getting a hold of the nurses ID badge and looking it over.  One of the nurses said she was taking names down in her mind and when she grows up and is Dr Lindsey Long and she sees this same nurse in a nursing home... well I finished it for the nurse and told her that Lindsey will be sure to take very good care of them!  The Oncologist said we could go get something to eat and then head up to his office.  Well I didn't have much of an appetite so I said we would be right up.  They said they would try to get the Dr in as soon as they could.  Next thing we knew he popped his head in and said he had just looked over the CT and did not see anything.  He said the radiologist would review further and let him know.  This was such wonderful news!  I knew that if he told us that it had spread that she would be ok, that it would just be a longer, harder battle.  I thank GOD that he removed this obstacle for us.  Then the Doctor said he would be back in as soon as he could.  It was so nice of him to come in and give us this wonderful news instead of making us wait any longer.  Then about, oh I don't know, maybe about 20 minutes later he came in to speak with us.  He told us that the radiologist should let him know in about 2 hour if they find anything.  We asked that if we had better chances if it was really small rather than finding a large piece and he said any evidence of it spreading would be just as bad, no matter how small.  He did say that her AFP (Alpha-fetoprotein) is very high, her levels are at 200,000 and the normal is less than 100.  He said there was nothing surprising on the blood work, it was everything they had expected to see.  He said her bone marrow is working good.  He said our next step is the biopsy.  He did tell us that there is still a chance that she might not need chemotherapy.  He said that if the tumor's is made up entirely of fetal histology - they will want to just take the tumor out if possible, and avoid chemotherapy.  He did say that since the surgeon here said he would not feel comfortable taking out this size tumor, he would probably send us for a second opinion.

If we are told that the surgery is impossible with the size of tumor, then maybe they would do a couple rounds of chemo and try to shrink it, then remove it.  If it is not entirely the fetal histology, then we will have to start chemo to try to shrink the tumor.  There is no way to tell how long the tumor has been there, he said possible there since before her birth.  He did say that Chemo can have significant problems and if we can avoid it, we will.  Lindsey has had a small fever and he said it is nothing to worry about.  It is probably just the body trying to fight off the tumor.  He discussed putting in her Broviac, which is her central line. They will use this for chemo and can also take blood from it. He said they can put it in when they do the biopsy, that way she will not have to have another surgery to put it in. He said that since there is still a chance that she will not need chemo he will leave it up to us, if we want it put in or not.  He said he would recommend it.  We thought it would be a good idea, because we wouldn't want her to have to have another surgery.  I also said to put it in because according to Murphy's Law if it is in, then she will not need it! The doctor said that sounded good.  The next step is the biopsy on Friday.  They will not be doing the needle biopsy, they are actually going to make an incision and take out a good size chunk of the tumor.  This will give them the best results.  She will possibly have to stay overnight, but he is not sure.  He said it will probably take a few weeks to get the results of the biopsy.  There is still a small chance that it is something else, but the doctor said based on lab results they are pretty sure it is the hepatoblastoma.  We are prepared to fight this battle for Lindsey's life and we just know that she is in God's hands, and He is going to heal her!

Everyone at the oncologist's office is just wonderful.  They all try to get us to let them take Lindsey home with them.  The social worker gave Lindsey a necklace today. It will be a necklace that tracks everything that she is going through.  The Bead Program (as they call it) is designed to document and honor the journey that Lindsey will take.  The program is a chance for children to tell their story using colorful beads as meaningful symbols of the many points along the treatment path.  She will add beads to her necklace for many different steps that she will be taking towards her recovery.  They said this is a great visual tool for the children to see how far they have come.  Even for the little ones, when they get older they can look at this necklace and recall everything they went through to get where they are that day!  So far Lindsey has 3 amethyst beads which represents tests/scans, she also has 3 red beads which represents how many times she has been poked. On Friday she will get a copper bead which represents surgery and a silver line crystal which is for her central line.  The social worker gave us quite a bit of literature, and was very supportive.  She asked if we had our family here with us to help in this difficult time.  I told her that my mom was here and is great support.  The rest of the family does not live here but we have had quite a few people reach out to us.  I told her that there were about 1,000 people in that little room with us and each and everyone had their arms around us.  Thank you all for being there with us today!

A friend sent me a very special poem today.  I think there is one more kleenex left in the box, but I am not sure.

The morning started off very well.  we attended 9am mass.  Father said a wonderful prayer for Lindsey.  After mass everyone prayed over a blanket that the church had made for Lindsey.  Then Father blessed the blanket with holy water.  It was then presented to Lindsey.  They also gave her an adorable little bear that moves and plays music.  Now she will be surrounded with prayers.  The blanket will be with her forever!

As far as the surgeon, well not the new that we hoped for, but it is going to be ok.  This leaves all the good news for tomorrow morning!  For this we pray!  The surgeon told us that the tumor is quite large and would be difficult to remove.  The tumor is taking up most of the right lobe of her liver.  Many have asked (and a question that I had myself) if the tumor is 4 inches, how big is her liver.  I asked today and was told it was about 6 inches.  The surgeon did say they could take out most of the right lobe of the liver, but this comes with big complications.  So the best at this time would be for Lindsey to do chemotherapy and shrink the size of the tumor, then remove it.  This type of cancer as we have said is very rare.  I read that it happens in one in a million. I knew Lindsey was my One in a Million, but I did not know that she was The one in a million.  I asked the surgeon about this and he confirmed that it is very rare and he has only seen it 4 or 5 times every!  So needless to say this was not the news we wanted to hear, but it is ok.  I will wait until 8:00 tomorrow morning for the good news. Our next step (after the CT in the morning) will be surgery at 8:00 am on Friday morning.  Lindsey will have a biopsy done.  There is a possibility that this is not a hepatoblastoma, but the surgeon said it was a very low possibility that it is anything else.  We asked if it was not a hepatoblastoma, what else to they think it could be.  He said an abnormality of some sort.  The surgeon said that he is going to talk with the oncologist tomorrow and most likely when they are doing the surgery on Friday they will go ahead and put a broviac in Lindsey.  This is how she will receive her chemotherapy.  I guess as soon as they take part of the tumor out during surgery they can take it right to the lab and find if it is malignant.  That will determine if they will put the broviac in. Further testing of the tumor will determine what stage the cancer is in and what sort of treatment schedule she will be put on.  That is all for now.  Tomorrow is the CT scan at 8:00am.  The doctor told us that if it has spread anywhere else, her chances are not as good.  He said that he is not going to say that on one survives, but... not as good of a chance.  I don't want to close with that so, please pray especially in the morning.  All your prayers are keeping us strong.  Lindsey is very happy and does not look like she is sick at all.  I will close with a prayer to ST Peregrine:

O great St Peregrine, you have been called "The Mighty", "The Wonder Worker", because of the numerous miracles which you have obtained from God for those who have had recourse to you.  For so many years you bore in your own flesh this cancerous disease that destroys they very fiber of our being, and had recourse to the source of all grace when the power of man could do no more.  You were favored with the vision of Jesus coming down from His Cross to heal your affliction.  Ask of God and Our Lady, the cure of the sick whom we entrust to you.  (Pause here and silently recall the names of the sick for whom you are praying.) Lindsey Ann Long.  Aided in this way by your powerful intercession, we shall sing to God, now and for all eternity, a song of gratitude for His great goodness and mercy.  Amen 

 I feel that GOD spoke directly to me today through the gospel.  I was amazed by the readings for today.  I had to look around quite a few times to see if this was a special mass just for me, or if there were others there with me.  Also every song we sang was about healing the sick, it was just amazing.  Here are the readings:

Isaiah 35:4-7 "I Say to those whose hearts are frightened: Be strong, fear not! Here is your God, he comes with vindication; With divine recompense He comes to save you.  Then will the eyes of the blind be opened, the ears of the deaf be cleared' Then will the lame leap like a stag, then the tongue of the dumb will sing.  Streams will burst forth in the desert, and rivers in the steppe.  The burning sands will become pools, and the thirst ground, springs of water."

James 21:1-5 "My brother, show no partiality as you adhere to the faith in our glorious Lord Jesus Christ.  For if a man with gold rings on his fingers and in fine clothes comes into your assembly, and a poor person in shabby clothes also comes in, and you pay attention to the one wearing the fine clothes and say, "Sit here, please," while you say to the poor one, "Stand there," or "Sit at my feet," have you not made distinctions among yourselves and become judges with evil designs?  Listen, my beloved brothers.  Did not God choose those who are poor in the world to be rich in faith and heirs of the kingdom that he promised to those who love him?"

Mark 7:31-37 "Again he left the district of Tyre and went by way of Sidon to the Sea of Galilee, into the district of the Decapolis.  And people brought to him a deaf man who had a speech impediment and begged him to lay his hand on him.  He took him off by himself away from the crowd.  He put his finger into the man's ears and, spitting, touched his tongue; then he looked up to heaven and groaned, and said to him, "Ephphatha!" (that is, "Be opened!") And [immediately] the man's ears were opened, his speech impediment was removed, and he spoke plainly.  He ordered them not to tell anyone.  But the more he ordered them not to, the more they proclaimed it.  They were exceedingly astonished and they said, "He has done all things well.  He makes the deaf hear and [the] mute speak."

This was one of the songs that we sang and it just is very powerful and I believe it is another very strong message!

Healer of our Every Ill (lyrics):

Refrain: Healer of every ill, light of each tomorrow, give us peace beyond our fear, and hope beyond our sorrow.

1. You who know our fears and sadness, grace us with your peace and gladness. Spirit of all comfort: fill our hearts.
2. 2. In the pain and joy beholding, how your grace is still unfolding, give us all your vision: God of love.
3. Give us strength to love each other, every sister, every brother.  Spirit of all kindness: be our guide.
4. You who know each thought and feeling, teach us all your way of healing.  Spirit of compassion: fill each heart.

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September 8th, 2006–CT Scan shows 4 inch tumor in Liver