Saturday, December 26, 2009

The Best Christmas Present Ever

This is "momma" updating Stacy's blog.  Wow~where do I begin.  I think the best place to begin is by our entire family giving our thanks to God for paving the way for Stacy to be discharged on Christmas Eve morning.  It was our most fervent prayer that Stacy would be medically able to be discharged home so she could be with her children for Christmas.  We give all the praise and glory to God!  I think I speak for the entire family when I say, this has been the BEST Christmas ever!  I know I never experienced one more moving and emotional than this one.  The joy we all received from watching Stacy and her children revel in being reunited for the holiday was more joy than any monetary gift could ever give.  Once being discharged and making a stop at the drug store for Rx's, Stacy's daddy and I got her home and all settled in.  Christian got to see his mommy first, and the sheer joy in that child's eyes would bring any human to tears.  He is such a kind, caring, loving child.  Then Kami arrived home.  I took a brief minute to explain to her that mommy had some boo-boo's and that I would show her where they were, so she could hug and be close to Mommy without hurting her.  Her meemaw has also been talking to her about this during her stay with her.  Thanks to meemaw and peepaw (Sarah & Mike) for doing such a great job!  It also helped that she had a baby doll that had a trach and she knew her mommy would have one also.  When Kami saw mommy, she just snuggled in very close and gave Stacy a longgggggggggggggggggggg gentle hug.  Stacy showed Kami all her boo-boo's and we explained to her what each one was, and why it was there.  Kami was OK with that, and it was clearly evident that the most important thing to Kami was that her mommy was home!!!!

I cannot put into words our Christmas Eve.  These kids were the best!!!!! I am so proud of them, and with the whole family together it was great.  Although many family members live in other states their presence through their thoughts and prayers were with all of us. 

Stacy has done really well with pain management, tube feeding, and trach care.  The trach is really irritating to her, but as the swelling continues to recede at an awesome rate, she gets closer to having it removed.  The key to the swelling going down is to be upright, mobile, and get plenty of fluids.  We go back to Chapel Hill on Monday, and hopefully they will remove this "pain in the neck".  If they don't remove it Monday, I am optimistic that they will give us a return appointment to do this.  They determine removal by having the ability to get adequate ventilation through the nose/mouth.  To do this, they will check the swelling in her throat, and then if it appears minimal, they will cap the trach and monitor her air intake and oxygen level in her blood.  Stacy is very motivated and is doing everything in her power to speed up the removal.

Christian has assisted his mom with several tube feedings, and also has given her some of her med's.  We are using the bolus method, which means that we use a large syringe and hook it up to the port in her tummy which allows the nutrition/meds to go into her stomach.  At the hospital we had a bag we could put her formula in and let it run, but this method is just as easy. 

Kami loves being on the bed when it is mommie's rest time.  She lays next to Stacy and will rub her arm and read to her to "make her feel better".  It is amazing how gentle Kami is.  It also amazes me that while Stacy can communicate verbally some through her trach, Kami always knows what her mommie is telling her through both verbalizations and gestures.  Christian also does well with this, and he likes when his mom communicates with him through writing. 

Our family would like to thank all our family, friends, and others for keeping Stacy and our family in your prayers. Please continue to pray for a speedy recovery for Stacy and for her trach to be removed within the next week or so.  We will continue to provide updates, and we encourage you to leave comments for Stacy.  She does use the computer for short amounts of time, and is a real whiz at texting!!!! We  hope everyone out there had a good Christmas.

Tuesday, December 22, 2009

Yeah, Nose tube is gone!!

Well, finally have time to contribute to the blog site.  Today Momma is updating the blog.  Today was another day of milestones!  First thing this morning the doctors came in and removed one of the dranage tubes/bulb and her doppler.  Then a little while later she went downstairs and had her g-tube inserted. After all this she came back to her room and rested for awhile because she was still groggy from meds, and a little sore from her earlier procedure.  The plastic surgeon came in and noted that she appeared to have some inflamation/redness on her neck, so he marked it with a pen ( I love all this sophisticated technology) so it can be watched closely and has added a second antibiotic. Later in the day I got to meet the discharge coordinator.  What a huge disappointment.  Being a social worker myself, I hold other social workers to high standards, and especially when it concerns my Stacy being able or not able to be home for Christmas.  Once I got her on the right path and took the bull by the horns I think "we" got mission accomplished.  I contacted home health agencies for about 3 1/2 hours and finally found an agency in Raleigh that would begin providing services on Christmas Day.  I also worked and worked with the staff at Johnston and Stacy's medicaid was approved.  Later in the day Charlie and I learned to do Stacy's trach care.  We will be ensuring that this is done daily and throughout the day as required until the trach is removed.  Stacy also had the feeding tube removed from her nose!!!!!! YEAH!  THANK GOD!!  Stacy was estatic.  To celebrate, I gave her a good bird bath, put her on a Christmas nightie, and sent her with her daddy for a stroll around the unit!  Of course, Miss Thang had to take 3 laps!!! She really did have a good day.  Tomorrow will be her swallow test, and the other drainage tube will be removed.    I would like to thank everyone for their prayers and phone calls.  Please know that they are greatly appreciated.  I do try to return calls, but most days the only calls I make are to family in PA.  We love you all, and will update you again soon.  Momma

Monday, December 21, 2009

Another day, another accomplishment

Today marks 6 days that Stacy has been at UNC.  The first hours were critical, the next day a little better.  Everyday has seen its fair share of ups and downs.  We've all laughed, we've cried.  But no matter what, we are always strong.

Sunday was another day of milestones.  Early that morning, they came in and took the suction off of Stacy's arm.  They say that it looks great; there is no redness or irritation.  Stacy continued to get in and out of bed and sitting in her chair.  She decided early afternoon that she wanted to take a walk, so the nurse came in and unhooked all of her tubes.  The nurse and I got her up, put a robe on her and we proceeded to walk!  For her first time walking in 5 days, she did great!  She walked the whole way around the ICU unit and then came back in and rested for a little while.  Later in the evening, she walked a couple more laps around, and then one more before bed.  As long as she feels like walking, we'll go all over the hospital, if that makes her happy.  She seems to have the energy, and the pain is managed by her drug pump. 

For all the good points, there are some bad.  We found out yesterday that she may not be home before Christmas Eve, but we're still very hopeful.  The thing she misses the most right now is her children.  She's also battling with the fact that she cant have any fluids orally.  She just wants one sip of water and it would be the greatest thing on earth.  She's also dealing with the emotions of going through such a traumatic surgery and experience altogether.  We try to reassure her that she's allowed to feel whatever emotion she faces, and though we may not necessarily understand, we're here to help her through it.  As we all know, Stacy is an incredibly strong - might I add, stubborn - woman.  When she gets it set in her head to do something, nothing can stop her.  Right now, her main focus is getting home with her kids for Christmas Eve.  I feel certain that she'll be there.  But if not, Christmas will wait....

They moved her to a room today.  She's hopefully going shortly to have her G Tube put in, so that hopefully they can remove the feeding tube from her nose tomorrow.  The stitches really irritate her and cause a lot of tenderness in her nostril.  So the sooner the better for that.  There is also hope that the drain tubes will come out of her neck tomorrow.  (I've not explained these, so let me do so... She has 2 tubes on the right side of her neck that are used to drain blood, fluids from the flap and sinus cavities.  This is to make sure that no bacteria gets caught in there and causes infection for the artery and its new home.)  The PT came in today and said that she should try to walk a little bit more everyday, continuing to take bigger steps each time.

Each day continues along the roller coaster ride.  She has ups and downs, but we know that one day she'll look back and know that every step was worth it.  We continue to hope for a special delivery on Christmas Eve feel optimistic about it.  Keep Stacy and our family in your prayers as we stand as a united front against this battle.  We will be behind her and by her side every step of the way.  The support that everyone has shown means so much to all of us and we thank you for all of your love, prayers and encouragement.

Sincerely,
Amanda

Saturday, December 19, 2009

It will be a long road, but she's on the right path...

It's been a few days since I've updated the blog.  Today is day 4 in ICU for Stacy.  She's doing remarkably well.  It seems like everyday gets even better.  This is going to be a long battle, with many bumps, but Stacy is strong.  She's a fighter and too stubborn to be deterred. 

Yesterday was a big day for Stacy.  She was able to get out of her bed for the first time.  She was passing notes back and forth with Mom most of the day.  She had several surprises, some planned and some spontaneous.  To start the day, she received a visit from Santa & Mrs. Claus.  Next, she received pictures of Kami and a video message from Christian.  Just what she needed, since she can't actually see them.  For the grand finale of the day, Our Aunt Mick from PA surprised her by flying down for the weekend.  She teared up when Aunt Mick walked in the door.  This visit is great for so many reasons, to all of us.  Aunt Mick also surprised Stacy by bringing her an iPod loaded with all sorts of good music.  Stacy enjoys it so much she's fallen asleep to it a few times already.  All of the excitement got her pretty tired, and they said that she did pretty well overnight.

They told her yesterday that she might go to a room today.  It was decided, however, that it would be best to stay where she's at.  Though she was a little upset by the news, we were able to make her see that it's for the best.  Afterall, she has one on one care where she's at, there is less chance of being exposed to bacteria, and it's just more comfortable.  She gets a little irritated when there is a lot going on, such as nurses, visitors, etc.  She enjoys sitting on the edge of the bed and just stretching her legs and letting her feet touch the floor.  She'll tell you when she's ready to sit up and then again when she's ready to lay back down.  The movement will get everything moving in her lungs, so it's a process, between suctioning the trach, juggling tubes and making sure her leg and arm aren't in harm's way.  But we somehow seem to make it work.  Her nurses, for the most part, have been phenomenal and are very willing to "bend" the visitation rules for us.  Stacy's like their little pet.  :) 

We're not sure when she'll go to a room, much less come home.  With any luck, they'll put in her feeding tube on Monday and send her home by Wednesday.  But whatever they decide, we know it's in her best interest.

That's about all I can think of right now, so I'll write more in a couple days.  Thank you again for all of the prayers and words of encouragement.  We try to relay all of your messages and encouraging words to Stacy.  With a nod and a smile, she tells us that she thanks you as well.  Our family is forever grateful for the generosity and support that has been shown by so many.  Thank you again....

Sincerely,
Amanda 

Wednesday, December 16, 2009

Another update

Hi everyone, just another quick update.  Since this morning, Stacy has made great improvements.  They've started cutting back on pain meds and have taken her off of sedatives.  They are doing this so that she can become more alert.  There is still a great bit of swelling, but the surgeon says that it will take weeks for this to start subsiding.  Also, her fever is slowly coming down and is not of great concern.
She's able to look at us and she'll smile.  She'll nod her head to yes and no questions.  Also, she's learning how to communicate with us through looks and hand gestures.  Overall, she's doing great.  This is just the beginning of the journey and we know that there will be a long road.  But we are very optimistic.  Keep her in your prayers.

Update on Stacy's surgery

Hi everyone, this is Amanda (Stacy's sister), trying to keep everyone up to speed.  Stacy had surgery yesterday to remove the cancer from her tongue.  It was a long, tedious procedure, but one that was well worth it.  We can now say that Stacy is officially CANCER FREE!!!!  :)
They took her back to the O.R. about 8 a.m. yesterday morning.  Around 12:30, Dr. Couch (the ENT) came out and let Mom know that the removal went well.  They found that the cancer had spread more across her tongue and also into her right lymph nodes.  So they went ahead and removed half of her tongue and the affected nodes.  In addition, they informed us that there might be some long term swallowing difficulties, as well as the need for permanent feeding tube placement.  Stacy is very malnourished where she hasn't been able to eat due to the swelling.  They cut her from her lower lip, down her chin, neck, and back almost to her right ear.  So the removal phase went well.  They tested 9 parameters and all came back negative.  This is a great thing, as it shows that they removed all the cancerous tissue! 
Her surgeon was on standby as they were waiting to hear from pathology.  After finding out that the parameters were good, he then proceeded to start the reconstruction process.  This is a very extensive process, as it took about 7 hours.  First, he had to take a "panel" from her left forearm.  They then used this panel to create her "flap", which is now what her new tongue is being referred to.  They also had to remove one of her back right molars since it had fillings in it.  This could prove problematic during radiation, so they just went ahead and removed the tooth.  They rebuilt the floor of her mouth and attached her "flap" to the remaining tongue.  As the surgeon says, she will only have tissue and an artery on the right side.  There is no muscle there, so the flap is simply "along for the ride", so to speak.  The critical time was after surgery, making sure that blood was flowing through the artery.  This artery had to be sutured under a microscope, so it is very fragile.  The Dr. says that there is a 5% chance that it doesn't take, but feels confident that she'll do good with it.
We were finally able to see her around 9:15 last night, and we weren't quite sure what to expect.  Granted, surgery is never pretty, especially when there are incisions and stitches that you don't expect.  She was pale, and it was hard to adjust to seeing all of the tubes, stitches, etc.  Mom and Dad went in first.  They spoke to her, and Mom made sure to tell her that the cancer is gone.  She was trying to move her head and open her eyes.  This elevated her blood pressure some, which is something they don't want.  So we took a break from going back for a little while.  Dad, Jamie and Jesse left shortly thereafter and Mom and I went back in to see her.  As her "little" sister, it's hard to see someone that I've always admired and looked up to laying there helpless.  I stayed strong, as I knew it would be best for her.  We visited for a few minutes, Mom helped the nurse update her medical history and then we were out.  We went back to the SECU house and stayed there last night.  We all needed a good night's sleep.
So today is a new day and we are back at the hospital.  Stacy is still in ICU and will be for a couple more days yet.  We went in to see her after the nurses said we could.  Oh, the relief we felt when she tried to open her eyes and was smiling for us!!  We were talking to her, telling her how good she looks and that she's doing great.  She would nod and squinch her eyes, letting us know that she acknowledged us.  We were telling her funny stories about Kami and pets and such, and she would smile and try to chuckle.  At one point as Mom was holding her hand, she started fanning her hand.  We started asking questions... "are you hurting? cold?  need something??"  Finally Mom says, "Are you hot?"  She nods, and we start taking blankets off of her legs and fanning her.  This is due to the fever that she is running, as her body is recovering from the trauma.  They aren't that concerned about it right now.  So Dad and Jamie arrived not long after we came out.  We prepared them for what to expect and they went into see her.  They stayed a little while, and now we're all just hanging out in the waiting room.  We'll be heading back to see her again in just a few minutes.
So long story short, Stacy is doing great.  Her vitals are good, her pulse in the tongue is good.  She'll be in SICU for a few days before they move her to a room.  We asked if she'll be home for Christmas and they said it's "possible" that she may come home as early as Tuesday.  It will all depend on how she does.
Again, from Stacy, our family and me, we would just like to thank everyone from the bottom of our hearts for all of the prayers, well wishes and warm thoughts.  We believe that it is with this that she is doing so well.  Not only that, we know that our sister Heather was holding her hand the whole time, making sure that we get to keep her a while longer.  She continues to improve and get stronger by the minute.  Please forgive us if this goes a few days without updates, but we have so much going on.  I'll make it my personal duty to sign in and post updates as often as I can.
God bless you all, and thank you again for the prayers.  Keep them coming, because they sure are working!!!!
Sincerely,
Amanda Chambers (for Stacy)

Wednesday, December 2, 2009

The Many Faces of Me

Well, I had another doctors appointment Monday with the chemo doctor.  Not too much happened there since they won't really know which protocol to follow until after surgery and they get all the pathology reports.  The doctor even commented he didn't understand why I was scheduled to see him except to maybe meet him face to face.  And trust me, this was one doctor I could have waited awhile to meet.  All my doctors have been really nice and have a good personality but I think this one may have taken too much chemo that morning or something. LOL

Anyway, on days that I have my appointments, I am really wore out and so that is why I didn't update that night.  Well, I was going to do it yesterday, but it seemed I was on an emotional roller coster.  Sometimes, I feel like I am on the outside just watching myself to try and figure out what is going on.  I have so many emotional and physical things going on it is just unreal, and the bad thing is that I don't have any "just normal" moments anymore.  I am fighting this battle between the Stacy with cancer that needs to rest and prepare for surgery , and the Stacy that just wants to feel normal and go through day by day just like I have always done.  Then the emotions start to pop up when I realize that I can't handle the normal lifestyle right now and it will be awhile before I can.  It is funny how we can take just our emotional and physical abilities for granted.  I have heard of it before but never new that it was this powerful.

Take now for instance, I am going to have to cut this short.  I just changed over the laundry, folded and put them away, start a new load, and started typing this and I feel exhausted.  I guess I will give into my exhausted side instead of fighting it and rest.  Again, I would like to thank everyone for all their help, words of encouragement, and prayers.
Love you all and God Bless!

Tuesday, November 24, 2009

Thank God this day is just about over!

So, I guess no matter how strong we all are and how strong our faith in God is, we will all have our "Woe is me moments."  Today has been one of those days.  No matter how strong I have tried to be, my defenses have been completely down.  I guess it could just be lack of sleep, huh?  For some reason, when the lack of sleep was caused by a crying child, it seemed somewhat easier.  But anyway, this day is almost over, and then nighty night, well for some of the night anyway. :)

I did have a visist with my ENT doctor today to go over procedures for my surgery.  Like I said before, my surgery is set for December 15th.  They expect me to be in ICU for 4 days and in the hospital a total of 7 to 10 days.  Please, everyone pray that I will not need to stay that long, it will kill me not to spend Christmas with my kiddos.  But anyway, they will be removing the part of my tongue with cancer on it and replacing it with part of my arm and an artery from my arm.  They will then remove some skin from my hip to replace on my arm (for some reason, they must have missed all the skin I have hanging around my waist, I could furnish a few surgeries for them, LOL).  They will be removing one of my glands from my neck and also put in a traech (sp?).  Ok, when they told me that, it freaked me out b/c I was not expecting that one at all and was not prepared.  But, come to find out, it could come out in as little as a week or I may have to go home with it.  From what I understand, they may have to use that for a feeding tube.  So, that is that, I was also informed that they will also be sending in home health care for me.  So, I guess all that is lined up, now I just need my big old bottle of courage pills (which I will find, just not today).

Besides that, everything and everyone has been a blessing.  All my family has been extra supportive with the kids and even Christians school (River Dell Elementary).  I really do appreciate all that everyone has done and I know there is no way possible that I could ever repay any of you.  My ex husband is even pitching in.  We are having a really hard time with the bills, so he is holding a Charity Golf Tournament December 11th in my honor.  This is thanks to my baby boy asking his daddy to help his mommy who is really, really sick.  I know what great kids I have but they never cease to amaze me.  They really are my heart.  God has blessed me with best two kids a mother could ever ask for.

Thursday, November 19, 2009

Keep the prayers coming, God is watching out for me!

Well, yesterday I received a call from my nurse saying that they have moved my surgery date up to December 15th due to the fact that January 4th was too far away.  So, I had 3 other doctor appointments today.  First thing this morning, I had to meet with their dentist.  Since I will be undergoing radiation, she informed me that the tooth that will be exposed to most of the radiation will need to be removed prior or I could experience complications later on, one of which could mean pain for the rest of my life.  So, what do I think of this?  That tooth has got to go!!!!  Hey, I believe I can rock some dentures if I have to! LOL  But hey, on the bright side, that was the only news from that doctor.  Thank you God, I love it when the news is this simple.  Since I have to go through all this, I pray that it will be kept as simple as possible.

Next I had to meet with the ultrasound people.  When they cut the cancer off of my tongue, they will have a plastic surgeon standing by to remove some skin and an artery from my arm to replace on my tongue.  One nurse told me that she has witnessed several people who have had this done and you can't even tell that part of their arm is in their mouth :).  So, he had to assess both arms and arteries to see how they would work if one of the arteries were removed.  Good news once more, no problems in that area again.  Keep the prayers coming people!  I am telling you, God is on my side.

My final appointment of the day was with the radiation people.  I actually thought they were going to take my tongue out at that moment.  Just kidding, but they twisted it, turned it, and checked it inside and out.  Luckily, we found out, that the cancer is basically contained to just my tongue.  It has not gotten to my lymph nodes, down my throat, or anywhere else.  They informed me that I would be going through radiation, just not sure as to how much.  They let me know alot of what was going on and what to expect.  We were told that my surgery would last anywhere from 8 to 12 hours, which is news my mom didn't take to well. (Just remember mom, I am strong and will make it through this, plus they need to make sure my tongue is pretty LOL)  From there, I will probably be in the hospital anywhere from 2 to 10 days for recovery.  They will then give me 4 weeks to heal and then I will proceed to radiation/chemo.  At this moment, it is looking like 6 to 7 weeks radiation, 5 days a week, with one of those days with chemo.  We do not know for sure, but that is all we know.

So, all in all, it has been a pretty positive day.  I am extremely tired and sore from all of it but it was worth positive news.  We were really fortunate last night b/c Temple Baptist Church of Selma was kind enough to bring my family a pancake dinner.  They are very kind and caring people and look forward to seeing them quite often at church.  Also, as everyone is praying for me, please say a prayer for my mom.  I know this is extremely hard on her, since she had to deal with alot of medical difficulties with Heather, which she handled like a champ.  She has been my mouthpiece alot, especially since my fat tongue makes it really hard to talk sometimes not to mention sore.  She is also asking all the right questions and trust me, this pain med can hardly let me know what day of the week it is.  So, not only is she being strong for her but for me as well.  She has taken me to all my appts and is planning on taking all this time off after my surgery so I ask that many prayers are sent her way so that she will be able to get the rest and peace that she needs and deserves.

That is all for tonight, but thanks again for all the kind words of encouragement and prayers.  I love you all!!

Monday, November 16, 2009

The moment my world stood still.....

I have never done this before, but once I received the wonderful news, my mom suggested setting up a blog so that my close ones would always know what was going on, even when I didn't have the strength to stay on the phone for hours.  So, I said what the heck, and here goes my first blog ever.  I wish it could start off on a more positive note.  But, just follow along, because I guarantee it will end with fireworks for the finale.

It all started with a small sore on my tongue.  I didn't do anything about it until it started messing with my sleep (and anyone with 2 small kids knows, you do not mess with our sleep or it is war).  I went to my family doctor and the ER about 3 times because it started causing me alot of pain and alot of sleepless nights.  Well, they kept diagnosing me with Thrush and treating me for it.  It wasn't getting any better, but worse.  My last visit to the ER had me seeing a new PA, which many came to me and apologized for the wait because she was new and slower than the rest.  Well, needless to say, I was dealing with having someone new but when she walked in the door, had me say Ahhhh (like they all do) and then gave me the dreaded news. "Honey, you need to go to an ENT immediately because this looks like cancer."  Wow, what a blow.  I went though, immediately, and he did a biopsy right away.  As many of you know, I am not your everyday, typical, mother of two, medically speaking.  One of the first things that came to mind is that, ok maybe it is sarcoid.  That is rare and likes to show up every once and awhile just to let me know it is still there.  Then, there is that dreaded HPV, which I can thank an unfaithful husband for giving me such a parting gift.  So, there we were, me and my family, pondering all the possiblities of what it could be because even though I had this feeling, like when I knew my first was a boy and my second was a girl, that it was cancer.  For once, why couldn't my feelings be wrong???  But I have accepted it now, and now I am ready to fight.  Yes, I am diagnosed with cancer but it doesn not make me who I am, it is just a glitch in my system, one that will just have to be terminated.

I am doing this to keep all my loved ones updated on appointments and my progress.  But, all of you should know, I am a fighter and this is going to be one hell of a fight but I have way too much to live for for something like this to knock me down.  All I ask out of everyone reading this is that you keep me in your prayers.  Yes, money, babysitters, food, etc.... that all helps, of course, but I know that God is the best help I can ever receive and he is always on my side, looking out for me.  I know I am a challenging case, but he also has all my guardian angels helping him out.

I just found out today that my surgery is scheduled for January 4th, 2010.  Right now, I am scheduled to meet with the dentist and radiation people on Thursday the 19th and then see my regular physician on the 24th.  On the 30th, I will be meeting with the people doing the chemo.  So, they are already trying to fill up my calendar.  I will keep everyone updated and the times when I am too weak or just don't feel up to it, my mom will fill in for me.

I want to thank everyone for the kind words of encouragement I have already received and for all the prayers which have been sent out on my behalf.

Love you all and God Bless!!!