Monday, December 31, 2012

Last Dr appointment of the year

We met with Dr Elkins this afternoon to get the results of my PET scan.  I got very nervous right after we got in the room---Bear said I started acting like I was on drugs!!  Luckily we didn't have to wait too long before she came in.  She started with the polite small talk and asked about Christmas, etc.  I was about to explode. Finally she said, "Well the good news is nothing got worse."  Yes, that is very good news.  However, not much got better either.  A few got better but majority of the lymphnodes stayed the same.  Like the last time, all the reactive nodes are very small.  She did go into more detail this time about "uptake"--the amount of glucose it uptakes during the scan.  It can be anywhere from 1-12.  My highest uptake was in my spleen at 2.8 and she says alot of Lymphoma patients have uptakes between 7-8.  This makes her continue to believe that if it is a lyphoma that it is low grade, slow, or very early.
So what's the plan?  She is sending the scan to my surgeon to determine if any nodes are accessible for a biopsy.  We are hoping for some in my neck, to be the least invasive.  Also they are sending it to the endo to review the 1/4 of thyroid that is remaining.  It appeared to be very inflammed and there is a possibility that it will need to be removed.  Go ahead and ask---why didn't we do that in the first place!?!  Still unsure of that.....  Anyway, if the dr doesn't think that the nodes will be accessible or yield accurate results then the next step will be to remove my spleen and biopsy it.  Yes you can live without your spleen :)  The spleen is part of the lymphatic system and it had the most uptake and is the largest to biopsy, therefore the results will be more accurate.  This will be the last resort.
I think that this is the best report that we could have gotten.  I definitely made it clear to her that I was not in the waiting mood.  I was ready to have some idea of what's going on and proceed.  Hopefully we will hear from the surgeon by the end of the week.

We have had a crazy year and until the last few months, it had been a very good year for the Smith's.  And even after this started, there have been some high points.  I have learned a lot and we have grown as a family and for that I will be grateful.  But we are ready to see what 2013 will bring.  I know there will be some lows but I know there will be many blessings also!  We will be ringing in the New Year by watching the LSU Tigers beat Clemson in the Chic-fil-a Bowl!  GEAUX TIGERS!!!

Sunday, December 30, 2012

Parent Watch Day

Yes, I am playing catch up! These are from the earlier part of December and were taken with my phone, so excuse the clarity!

Not sure how many of you remember lasts year's willingness to cooperate with dance--which was ZERO!!  But just as always, my kids will do things when they are good and ready :)
Cohen has enjoyed dance alot this year and has come home to show us some moves that she has learned.  She is with a new group of girls and she is also taking a tumbling class right before dance class starts.  She takes a gymnastics class on Tuesdays at Courthouse (more on that one later!)

She surprised me so much with her willingness to cooperate during the Parent Watch Day.  Usually she is still somewhat shy around an audience but she didn't let it phase her!

This is what she looked like everytime I saw her do anything last year!!!  No worries, it was just a rest break :)

Friday, December 28, 2012

In case you were still wondering....

I had my follow-up PET scan today.  It was scheduled for next week but my sweet dr rearranged everything to have done before year end for insurance purposes.  I think they were a little confused and overwhelmed at the office-- the machine display went out yesterday so many of us were rescheduled for later in the day.  Well they asked if I was there for a CT and PET scan or just PET scan----how the heck should I know!?!  I told them I had one in October and I was just here for the repeat test.  They must have not looked it up and erred on the side of caution because I ended up getting PET scan and CT with contrast (I know I did not receive the dye that sets you on FIRE last time :))  I am sure my insurance will love that decision!
I will see Dr Elkins on Monday to see what the next step is.  I have been thinking long and hard about what the possibilities are and I don't know that my mind will ever be settled unless she biopsies some lymphnodes.  By all means, I would love to hear that they are cancer free but I don't think I can handle, not as many reacted this time or let's watch them a little longer, etc.  I am just ready to know and proceed.
I haven't been posting a lot of what's been going on because things have been really hard for me.  Physically as far as surgery incision, I have healed great---minimal scar!  But physically as far as my body's reaction to no thyroid has thrown me for a major emotional, hormonal, and physical tailspin!  It started about 6 weeks out and I just got to where my internal temperature gauge was out of whack---HOT, cold, FREEZING, sweating, etc.  And this usually all occured between the hours of 8:00pm when I would start shaking until about 10:00am and in between I would have changed PJs twice because I would sweat, go to the linen closet and gotten a blanket because I was cold, etc.  Therefore, I was getting ZERO sleep.  So I thought I was just exhausted.  After a few weeks of that and then my period went crazy, I finally called the endo and needless to say my levels were perfect---even with no med adjustments after surgery.  Last week, I went and saw my OBGYN and was filling her in and she thinks it was my Wellbutrin (I started in July for some TypeA/anxiety stuff I had going on) exacerbating everything.  She didn't think that Welbutrin is a very good "reactive" drug and now my body is reacting to a physical problem.  So she changed that med.  Well since that was last week and the test was today, I refused to take anything "new" until after the test.  I did not want anything to scew the results.  I have been off for 1 week and have definitely felt much better.  I am thinking that I might just stay off both of them and see how I even out.  Especially if we hear good news next week!
I will update Monday after we see the dr and have a new plan mapped out!

By the way, I still have Disney to post and we had a fabulous Christmas that I need to share!

Wednesday, December 26, 2012

Merry Christmas.....Card :)

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In case you weren't on my Christmas Card list, here is this year's card!!  I truly hope everyone had a wonderful Christmas and a blessed New Year's!

Sunday, December 2, 2012

I got my hands up...

I got my hands up...

Rockin in my truck...

Got the radio on..
Your singing every song!

I might have a slight, little, tiny, um...well, Ok, I will admit it-- I have had a kinda medium sized crush on Luke Bryan since we saw him almost 2 years ago at a Tim McGraw concert.  He hadn't even made it big and he was known for "Rain makes Corn" song.  However, Bear and I left that concert and decided that he put on a better show than Tim.  We have been fans ever since.  We saw him again in April where he headlined and have tickets to see him again in January. 
Well, it wouldn't be right for me as a parent to withhold such great music talent :)  I am proud to say that Kinson knows every word to "Drunk on you" and sings it with such passion!!  And now my sweet little Coco has learned of Luke.  She will request the "Boom, Boom Song" and her new favorite is "I don't want the night to end."  What can I say?  They have some good taste.....most of the time. If they aren't requesting Luke songs they want to hear "Justin the Beaver" as Cohen calls him. 

Wednesday, November 28, 2012

2 centimeters and K's........

Monday we went for Cohen's endocrinology check-up.  We hadn't seen Dr. Moll in 6 months so we were anxious to see her stats.  Bear and I discussed a few months ago that we wanted to take a hiatus from her Growth Hormone shots.  We really didn't discuss this with the dr, we just felt like she had been on them for 2 years and yes, she has grown, but maybe she would have grown that without them, maybe not.  Well the results were she grew 2 cm.  She is now 35.75" tall and weighed 34lbs.  She is still not on the growth chart for height and 40th percentile for height.  Growing 2 cm is a big feat for her, but it took 6 months.  There is no set amount that she should grow, she just needs to continue on "her" growth curve.  The bad news is that we fell on her curve.  Her growth did not keep her on the curve she had been maintaining while on the shots :(  So we will be getting back on the shots as soon as our insurance gets the details worked out.  We are still waiting for her bone Xray results to come back.  In the past, her bones have been anywhere from 12-16months behind in age.  This is usually the deciding factor for us.  We don't care if she is little, small, petite, or whatever you want to call it, but we do want her to be age appropriate and be able to do what other 4 year olds can do.  I also discussed my concerns about her physique being still "baby-like" and he agreed that she did not have a mature body yet but her slow muscles are contributing to majority of her stomach area.  
Decisions like this are so hard for me.  It would make me so happy to know one day we did not have to plan meals around medicine and ensure when we go on road trips that we have a cooler to keep shots at the right temperature.  And now that she has a voice, it will tear at me when she screams that she doesn't want her shot (however she did FABULOUS at the lab Monday--not a single tear even when they didn't get it on the first stick!!).  But it is days like today that make everything worth it.............
Sweet baby girl was EXHAUSTED today!!  And the reason why is so exciting for us.  She got a new sound today for her book.  It is a BIG DEAL when we get a new sound.  She got her 21st sound today and it is "k" (c-uh) sound.  You might be thinking, that's not too hard.  Well you are WRONG :)  "K" is a sound made from the back of you throat--specifically, the velam-- which takes a lot of coordination.  Her and Ms. Taneil had been working on this for the last 6 weeks and today she mastered it without any stimuli.  YAY!!!   So, so proud of her!!  Her new goal is to be able to articulate her name correctly.  She is so determined!  There is no doubt that she will master that too!!

Saturday, November 17, 2012

We are back from the most Magical place on Earth!!

Sorry for long time, no blog!  But we have spent the last 7 days traveling to and from and enjoying Disneyworld!!  I have tons more pictures to upload and will post about our trip more thoroughly but this is just a quick stop in to say we are back :)

This was such a wonderful surprise.  My Aunt and cousin from Virginia were in Disneyworld to enjoy Epcot's Wine and Food Festival and run the Half-marathon.  We got to meet up with them for a quick visit before their carb up late lunch--- the race started at 10:00pm!!

Tuesday, November 6, 2012

Go Saints....wait.....we are the Eagles!!

So sad that soccer season has ended :(  This was truly a special group of boys and our favorite girl.  They each had such fun personalities and how Coach Steve was able to control them, is beyond me.  He was so good with the kids.  He let them have tons of fun but the kids also knew he meant business when it came to sportsmanship and listening. 
We had our end of the season party at Mazzio's.  The kids had the best time seeing each other off the fields.  To say they were WILD was an under statement.  I am sure they appreciated our business but they were glad to see us go!
Here are a few meager attempts at team pictures!  First we tried sitting down......
 This was by far my favorite picture.  This just captures how rambunctious they really are.
 This was better--they really do like each other!
 Just having fun!!
 Sweet friend, Barron getting his medal
 Kinson proud to wear his medal!
 Let's try team pictures standing......
This didn't work out either!!

If you are curious about the balloons, Smiley the clown, was our entertainment for the night!  Doesn't every soccer party have a clown!?!  The kids were mesmerized by him and they were so excited to choose their balloons.

Each child received a medal for participation. The medals were very nice!  Much nicer than we got in the past!    
We had a great, fun season and can't wait until the Spring!  Goooo Saints........wait.....we are the EAGLES!!!

Thursday, November 1, 2012

Power of Prayer

I always knew that prayer can be a powerful thing.  I have witnessed many answered prayers and many of my prayers have been answered in the past.  But this might be the first time I actually felt the power of prayer at such a grand level.  I have been overwhelmed at the people who have been praying for me.  And that is probably the one thing that kept me getting out of bed the last 3 weeks.  I prayed over and over to God to just give me the strength to go through this journey and let me not stray.  I was afraid that I might get to the point where I would lose faith and begin making deals with anybody that would listen.  But several of my prayer warriors told me that they had been praying that the cancer would be gone and several even told me that they prayed that the cancer would be given to them instead.  In the back of mind, I kept thinking that wasn't doing us any good, we know I've got it so let's move forward and go from there.  That is where I have been proven WRONG!!
Tuesday we went to see my drs.  First stop was the surgeon to check out my incision, which by the way looks great.  Well he kind of spilled the beans.  He walked in and looked at me and said "You don't have it and by the way your bone marrow is negative for lymphoma.  Don't tell Dr. Elkins that I told you!"  I knew I had just heard him wrong and said, "I don't have lymphoma?"  We did not know that this could be an option.  He went on to explain that there is a 5% chance that the Fine Needle Aspiration could be wrong.  My head kept saying, he is just a surgeon and he has no idea what he is talking about.  When we left, I looked at Bear and my Mom and told them to not say anything, I was not ready to go "there" yet.  There was not going to be any walls coming down yet.
   For the next 2 hours, we waited for Dr Elkins.  We were in a room waiting and could here hear on the phone just talking and then move on to the next call.  We were so frustrated!  Finally when she came in she explained that she needed to hear some things directly from the pathologists mouth.  She went on to tell us that they had sent my thyroid biopsy to Mayo Clinic where it showed that I had atypical lymphoid cells.  These cells are abnormal and can be precancerous or they could have just stayed in that state indefinitely.  She called the first pathologist and he said that he had enough evidence in "gradient flow" (lab talk) to give the diagnosis of lymphoma cells but he also looked at the new biopsy and the lymphoma cells were no longer there!!  WHAT!?!  They were there, now they are gone??  Makes you wonder...
We knew there had to be more, otherwise she would have been a little more excited and shooing us out the door.  My PET scan showed some areas of concern.  A few lymphnodes under my arms, abdomen, and  groin had a reactive response. They can react due to 1. cancer or 2. inflammation.  Our hope is that it is inflammation caused by my inflamed thyroid-- it is all part of the lymphatic system.  If not, based on small size (the biggest lymphnode was 7mm) and the absence of the large B cells in my thyroid, that if it is cancerous that she is thinking it would be a low-grade lymphoma.  This tends to be less aggressive, slower, and typically easier to treat.  So now we wait until January 3rd.  I will be rescanned and if they react again, then a biopsy will be performed to get a diagnosis. 
Are we thrilled? YES. Are we thankful? YES.  Are we still scared? YES.  I know that this is a true miracle.  That dr looked me in the eye on October 15 and said "You have a malignancy and it is Primary thyroid Lyphoma."  There was not "it is suspected" or "it looks like", it was "YOU HAVE."  And now it's, "You DON'T have."  Yeah, yeah, 5% error.  Whatever!!  It was there and now it's gone.  That just doesn't happen.  God happens. 
I asked a close friend, how am I supposed to go back to everyday life like nothing is wrong and not worry every moment that something is going on?  She gave me the best advice.  She told me that you can't let it consume you.  You have to be thankful for each day and until you get bad news, don't worry.  So that is what I am going to try and do.  I haven't gotten any bad news.  I am not going to lie-- we are cautiously optimistic--I still have a few walls up.  But I have a lot of things and people that make me want to move on and live my life.  And here is a picture of my fun life!  Bear raided Kinson's room for a last minute costume!!

Tuesday, October 30, 2012

Today is the day...

This afternoon can't get here soon enough!!  My appts are at 2:15 with surgeon and 3:00 with heme/onc. 

If you have a few extra prayers today, I would appreciate them.  Until Friday, I had not been anxious.  I knew that everything the drs were telling us was just there "educated guess."  Nobody knew anything for sure.  But after that scan, somebody knows.  Somebody knows exactly what's going on in my body.  As much as I do want to know and begin fighting this, there is still part of me that wishes I could just be dumb and just go on with life.

My coworker sent me this text last night, "Whenever you start to feel afraid, remember I am holding you by your right hand.  I am taking care of you, therefore you needn't be afraid of anything.  Thank me for the conditions that are requiring you to be still.  Instead of resenting the limitations of a weak body, search for my way in the midst of these circumstances.  Limitations can be liberating when your strongest desire is to live closer to me.  My strength and power show themselves most effective in weakness."

The last 2 weeks have definitely caused me to slow down and be still and by all means I know I have been afraid.  I have had a lot of alone time and even though the first few days were rough, I am rethinking that and have become thankful for this time to slow down.  I have felt good and been walking in the neighborhood after taking Cohen to school and I quickly realized that if I get to be off and do this, what a better time than the Fall.  My neighborhood trees are beautiful and there is an island that you can walk out on and look over the Pelahatchie Bay.  And there are these birds or pelicans, I am not sure, but they only come 1 time a year.  There are probably 200 of them and they flock together and are beautiful.  This is something that I would never get to do!  The As far as being afraid, I would be lying if i said I wasn't.  That's all I will say about that.  But I do know God has placed many people in my life to help me along in this journey and that has eased my fears. 

Will definitely update after the appts!!

Sunday, October 28, 2012

Mr Doodlebug

Kinson's Kindergarten class has a mascot called "Mr Doodlebug."  He gets to go home with a special student every Friday, spend the weekend, and return on Monday with a journal of what exciting things he did with them.  When Kinson came home Friday he was so excited to tell us that Mr Doodlebug was spending the WHOLE weekend with us!!  He already had everything planned out-- Mr Doodlebug was going to have a very busy weekend :)
First stop--Soccer game.  Mr Doodlebug sat with me all bundled up as we FROZE watching Kinson score 3 goals.  I was way too cold to get the camera out so you will just have to use your imagination.
Second stop- Nana's house to drop off Cohen.  She was so excited to get to meet him.
Next Mr Doodlebug was going to learn to defend himself.  He was going to "Sword Camp."  Yes, you read that right!  Kinson takes Karate and this Saturday they had planned a afternoon camp for the kids to learn coordination and balance with sword fighting.  Don't worry- the swords won't hurt them.  They both had the best time!

Mr Doodlebug got all revved up for the Big game Saturday night.  Much to my dismay, Kinson has become a Bulldog fan. I know, I know, it could be worse!!  So Saturday we cooked out and prepared to cheer them on.  You know the outcome and it wasn't pretty for the Bulldogs.  Poor Kinson cried his little heart out as soon as Alabama scored the first touchdown :(  We have to work on our losing attitude!!

We had a low key day and painted a few pumpkins (too dark for pictures).  Mr Doodlebug has stressed us out a bit.  Kinson can't keep up with anything and we have an 11month old puppy that chews everything in sight!!  We are kind of ready for Mr Doodlebug to go back to his safe school tomorrow.  But we do hope he had fun and gets to come back soon!

Friday, October 26, 2012

Next step....complete!!

Sorry, I didn't update everyone yesterday but there was a change in schedule with my PET scan.  Luckily, they called and had an opening at 7:00am!!  I jumped on it :)  I had been told no eating or drinking 6 hours before but other than that I knew nothing.  My endocrinologist made me promise not to spend hours looking on the Internet getting myself worked up.  So far, I have been pretty good, only looking at credible medical sites and just enough to understand what's going on (there is very little out there on PTL anyway!)  But last night, it hit me that I had, had several scans and tests but did not know what the PET scan entailed.  I always say ignorant is bliss, well I should have listened.  I got the main idea, inject dye, wait an hour, do the scan.  Well, there were a few horror stories of catheters and having to pee and reactions, etc.  Well that didn't lead to a good night's rest! 

Let me tell you, it was a piece of cake!  Got there, got in a comfy recliner, got the injection, they gave me water (hallelujah!), and dimmed the lights and said relax.  Ha!!  Me relax!?!  I had brought my kindle and phone, prepared to respond to emails, facebook, and surf the web.  But they had told me I needed to stay still and no talking because it causes my muscles to absorb the injection and the images will be harder to read. So I laid back and the next thing I know, he is returning and says its time to go!  I fell sound asleep!! The scan itself was 10 minutes of lying still with my arms over my head.  It was so much easier than the several MRI's I have annoying knocking sounds!!

So now we WAIT.....some more.  Every step that we have done has led up til Tuesday.  I haven't been worried because I always felt that no one knows the exact diagnosis yet, so therefore we have nothing to be worried about.  But now I have done everything.  The scan will be read today.  My Dr will know and make out a plan and fill us in Tuesday.  Now I am getting a bit nervous. Remember that I said "Ignorance is bliss."  In a way, ignorance keeps me sane.  But I hate this state of limbo, I am ready for a plan.  I have asked God over and over, just give me the strength to get through this.  I know He will!

Now I am off to Magnolia's Fall Festival to hang out with some of the sweetest little people I know.  You can't help but go there and just smile! 

Thursday, October 25, 2012

The next step...

I had been waiting patiently all week for them to call me about my scans and never heard from them, so yesterday I broke down and called the nurse (for some reason I feel like it bothers them).  She called back and told me the PET scan and CT scans are scheduled for Friday afternoon. I had to drag info out of her regarding the procedure-- can I come alone?, how do I prepare? etc.  She didn't give much info out but luckily UMC has set up a "virtual chart."  The chart notifies you by email if any new info has been added to it.  This includes appts, labs, and instructions.  This is where I found out I am to be NPO, 6 hrs before the test.  Did I mention that I get the injection at 1:30 and the scan at 2:30?  This will not go well with the one who has been diligently forcing myself to eat throughout the day to gain some weight, per dr orders! So I am sure a big, early breakfast is in store!  We will meet again with drs next Tuesday, the 30th, to get the results of all my tests.

Wanted to make sure I post this before I forgot.  In the midst of our crazy week, last week, Kinson got his first report card!!  He was so proud of it and we were very proud with what it said!  He is reading on a C Level (they start at A).  I have been totally amazed on what he has learned to read when he brings his homework home, in just this short period of time. He got "S" in all the other areas!  As far as behaviors, he has gotten on "yellow" light a few times.  The second time he got on it, he came home and told me that "water" didn't come out of his eyes this time!  Poor baby, cried when he got on yellow light the first time :(  But don't be fooled by that, now it is no big deal to him to get on yellow.......,according to him "red" is bad because you go to the office.  I met with his teacher last week and she reassured me that he was doing very well.  She said he tends to worry about others more than himself and she has to remind him to pay attention to his work.  She also told us that him and 2 other boys have been nicknamed "The Frat Boys" in her class!  He still loves Kindergarten and all his new friends.
This picture is from my phone and please forgive the hair, this was right after bathtime :)

Wednesday, October 24, 2012

Four years ago...

Four years ago, I remember distinctly waking up and thinking "We must be the luckiest parents EVER!!"  Cohen was 4 days old and had just slept 7 straight hours.  Unheard of!  To this day her sleeping has always come easily and that statement is still true.  However, it is true because of so many more things.
  She is the sweetest child with such a loving heart.  She has recently become open to showing her affection with hugs and cuddling.  This was a long time coming.  She has a determination that is fierce.  It shows through all of her accomplishments and we know there will be many days ahead that her determination will get her through.  Nobody can ever look at her and not smile.  She looks at you with those big brown eyes and says, "What's your name?"  She doesn't really care your name but if she gets your attention with that you better pull up a chair because she has tons to tell you.  She's in charge. All. the. time.  I know I said she is sweet and loving but remember determined?  When you put those 3 all together, we turn to mush and yes, we do what we are told :)

This picture is what Cohen looks like when she says "Cheese!"  We also get this look-minus the smile-when she gets mad with us.  We call it her "Marie" face (only my family will understand!) 

It literally tore at my heart to miss her birthday Friday.  We had a family birthday party for her at home Sunday that I got to celebrate with her.  But she has so many people that love her and they made her real birthday so, so special.  She spent the day at the Pumpkin Patch with her classmates and BeBe.  She went and ate lunch with Aunt Deborah and Bebe and then picked up Kinson to go eat ice cream.  Her day ended with Nana, Uncle Bo, BeBe, and Kinson taking her to the neighborhood Halloween party and eat Hibachi and sushi. Yes, the girl can eat some sushi, chopsticks and all! Her birthday continued Saturday at the Boo Zoo party. Wonder why she is in charge??

Cohen has continued to flourish in language and speech these last few months.  Her biggest accomplishment is singing.  The skill began to emerge at the end of last school year and has continued this year.  She loves to sing "ABC's" and the "Days of the week."  She spends at least 15 minutes while in bed singing her heart out!  She has over 20 sounds now and they have began combining them into words i.e. "t""oo"= two.  This is still hard for her.  She can says an isolated sound well but she usually leaves off the beginning or ending sound when saying full words.  We can see so many improvements in other areas too.  She started receiving PT services in September for some gross motor deficits.  In a few short weeks, she can run a little less clumsy and climb steps bringing both feet up to 1 step, without holding on.  

We still know we are the luckiest parents ever to be chosen to be HER parents.  She brings more joy into our lives than we could ever imagine.  She has shown us how much courage and strength a little person can have.  We have learned from her.  Happy Birthday, sweet girl!

Tuesday, October 23, 2012

A few answers to the several questions...

It is amazing to me how resilient our bodies can be.  Besides a nasty looking incision and the globs of glue they used to close it, I wouldn't know that I had surgery 4 days ago.  So far, so good.  

We have received so many phone calls, texts, and emails asking about how we are holding up and what's next (I will get to those questions too), but the number one question asked is what symptoms was I having.  Absolutely none!  I couldn't feel the nodule, nothing hurt, and I hadn't been feeling "sick."  I see my dr every 6 months for labs and every other visit she does an ultrasound.  It was just a regular routine check-up that discovered it. I can't begin say how thankful we are to have Dr Ahmad and her proactiveness.  Because I will be honest, I was ignorant to the condition.  I can tell you EVERY single lab drawn on Cohen and what her conditions entail but besides taking the medicine, I didn't know to be cautious about Hashimoto's.  Yes, PTL is very rare but there are many other issues around Hashimoto's that needs monitoring.

Next thing everyone wants to know is, what's next?  We are still waiting patiently :) for results of the biopsy and I spoke with the nurse yesterday and they are scheduling my PET/CT scans this week.  I will meet with the surgeon and Dr Elkins (heme/onc dr) next Tuesday and should have a plan in place.  She did say that treatment would not begin for 2-3 weeks after surgery to give my neck time to heal.  

Can I work?  Sadly, no :(  The environment that I work in has a very high acuity of infections and that does not mix well with my non-existent immune system.  However, to my bosses and coworkers who read this-- I WILL BE BACK!  You can't get rid of me that easily. To this point, this has been the hardest part.  I call my work, my family.  And they truly are.  My company has been very supportive of us through plenty and it hasn't stopped now.  Bear will continue to work and again his bosses have been very supportive with last minute changes in scheduling and his "office" for the day. 

How are the kids?  Kinson is my "worrier" and Cohen is my "carefree" child.  I spoke with both of their teachers last week to update them on what was to come.  They are the ones who are with our children more than us and I know they will be able to pick up on something is not right. We explained to Kinson that I had surgery on my neck and it was cool that I was getting stitches.  He knows all about stitches so he understood pretty well.  We didn't give Cohen a lot of warning because Friday was her birthday.  It broke my heart to know that we would miss it but it was a special field trip at school and I knew they would make her feel extra special.  Plus, the family members that kept them absolutely spoiled them rotten!!  Of course, they do seen the incision but they are careful and know that I can't pick them up yet.  Kinson also likes to let everyone know that I won't be working for a few weeks.  After we know more, we will decide what we want to tell them.  It is hard for me because I do not want them to think that Mama is "sick." 

What do we need?  We feel so blessed with friends and family and even those we don't know that want to do something for us.  It is hard to ask for help but we know there will be many times when we will need it. I would like for our kid's lives to not be interrupted as much as possible, so there will be plenty of times they will need rides or play dates etc.  Immediate needs, just a few prayers.  Prayers for understanding, prayers for patience, and prayers for knowledge.  We feel God's presence with us and know He is right beside us in this journey. 

I will continue to update as we know more!

Sunday, October 21, 2012

First step complete

We are home!  Thanks for all the prayers, good wishes, and encouraging emails and texts.  Each one might not have gotten a response from me but were appreciated and needed.

In my eyes, surgery was very successful.  The surgeon had anticipated only being able to remove the right side of my thyroid but was able to remove that plus the upper half of my left side.  He also removed 1 lymphnode.  I thought I was prepared for surgery--heck this makes #15 for me-- but I guess I had never had one that was so close to my breathing parts.  The spirometer and I have a love/hate relationship right now.  Because my neck and chest are so swollen, I am not fully expanding my lungs when I breathe therefore increasing risk for pneumonia.  So I diligently breathe in with the machine and proceed to cough my lungs up and feel as though I will rip my neck open :)  Pretty sight, huh?  So far, that has been my biggest hurdle. While in the hospital, my calcium levels did drop but are going to be managed by medicine at home and checked regularly.
We did meet with the heme/onc dr Thursday afternoon.  She was wonderful.  So great that she thought ahead so that I could have my bone marrow biopsy also done while in surgery.  I heard that it can be painful and it is usually done while awake!  Because so much is unknown, she couldn't lay out a definite plan but gave us more of a timeline.  Treatment should begin in 2-3 weeks after getting the results from pathology and my scans.  The PET and CT scan will be sometime this week.  Minimum treatment will consist of 2-3 rounds of chemo plus radiation and will increase as staging progresses.  The pathology report will let them know what type of cells we are dealing with to know which medicines will be used.  80-90% (right now, I don't think statistics apply to me!) are a large, Bcell type that uses 4 chemo meds (I don't know the names specifically but an acronym of CHOP) plus an add on.  The other 10-20% are another type of cells that would use 3 meds plus an add on, the med that is omitted is the med that causes hair loss.  She felt like this still was very treatable and after treatment, little chance of recurrence.  We left there feeling very relieved, encouraged, and confident in her and her team. 
So what are we doing now?  Trying to live life as normal as possible as we WAIT. This is hard for me because normal life consists of working for me and due to the environment, I can't be there.  I love my job and coworkers, so this is going to be very hard for me.  I know there will be days when I feel fine and will want to be doing the normal day-to-day stuff. 
Again, I can't begin to say how overwhelmed we have been by the outpouring of support by everyone.  I have received so many messages from those who don't know me personally but knows someone who knows me or my family.  I have been asked by many if it's okay to add me to prayer lists, and the answer is "Absolutely!"  This is something that we can not go through alone and the more that are supporting us in anyway the easier this will be to get through.  I am holding up well I think mostly because I have nothing for sure to worry about yet.  I had asked many last week to pray for me for some peace, contentment, and understanding during this time until we knew the definite diagnosis. I have felt those prayers and know that until the labs come back, we have done everything that we can do. 
I will continue to keep everyone updated as we know things!

Wednesday, October 17, 2012

The "C" word

I have used my blog for various reasons over the last few years but usually it is just to document and show off the sweetest and cutest 2 kids ever.  I want to be able to one day look back and remember all the good times..........and now we will add the not so good times.  It is very hard for me to type it out but here goes--- I have cancer.  There, I said it.  I have said it repeatedly over the last 2 hasn't gotten any easier.

Rewind the clock 4 years ago when I was 30 weeks pregnant with Cohen.  I went to the hospital in preterm labor.  The labor was stopped and I was sent home on bed rest.  What they noticed was that my heart rate stayed elevated and it was discovered that I had hypothyroidism. After Cohen was born, I saw an endocrinologist who more specifically diagnosed me with Hashimoto's Autoimmune Thyroiditis. Since then I have had my TSH, T3, and T4 levels checked regularly and managed with medication.  She also likes monitor the anatomical makeup of the thyroid.  On October 1, I went for my annual ultrasound of my thyroid where a 9mm nodule was discovered on my Right lobe.  Nodules are very common in Hashimoto's and usually only of concern if greater than 1cm in size.  However this nodule was new so as a precautionary measure, the Dr wanted to perform a fine needle aspiration.  I had it done the following Wednesday and received the results Monday.  I had researched nodules and learned that 95% of nodules are NOT cancerous.  That means 19 out 20 are benign.  Can you see where I am going with this?  I am in the 5%.  I also learned the 4 types of thyroid cancers and knew that majority were very treatable.  What I did not research was the less than 1% chance of another type of cancer.  I bet you know what's next.  I am the 1 in a million (yes that says MILLION) that has Primary Thyroid Lymphoma.  This is a lymphoma that actually originates in the thyroid. 
Lots of things are unknown at this point.  I am very pleased with my endocrinologist and the team of drs that she has ready to treat me.  I am choosing to continue my treatment at UMC due to the fact of the extreme rarity and the little info out there on PTL.  I met with a surgeon yesterday who will remove the Right lobe of my thyroid Friday.  He will consider taking out the whole thing after looking at the complexity of the tissue.  Hashimoto's thyroids are usually very scarred and difficult to remove.  Clinically, surgery is not required but to get the most accurate biopsy more tissue is required.  He will also remove some lymph nodes to have tested to see if it has spread.  After the surgery, we will wait 5 days for pathology to test and determine the cell type to know what we are dealing with.  I will also be scanned from  "head to toe" to ensure it has not spread.  Of course we are hoping that it has not spread and that the cancer is contained to the thyroid. Chemo and radiation are the most effective with treating this cancer if even contained.  The staging will determine the frequency and intensity.  
Everything is very surreal right now.  Things have moved very fast and I know I have not processed everything.  I have time to do that.  I know it will hit me.  But what I do realize is that I am very fortunate to have a very thorough Dr (I had zero symptoms) and I  can also see that God has done a few things over the last few months to make some aspects of this easier to manage.  Tomorrow we are meeting the hematologist/oncologist who specializes in Lymphoma.  I am anxious to hear what she has planned and meet my new best friends for the next few months.  
I can say how appreciative and overwhelmed I am at the outpouring of support in such a short time.  I can tell that we will be well fed, have plenty of babysitters, and lots of love in the next few months :)

Sunday, September 23, 2012

Go Eagles!!

Another season of soccer has began and this year we are loving it!!  We switched teams and couldn't be happier.  Coach Steve has a very good approach and balance of learning and fun.  Best part, Kinson actually listens to him!  We have played 2 games and Kinson has scored in both games.  Something has finally "clicked" and he understands the concept.  Bear is an avid soccer fan and they have spent several EARLY mornings together watching the European Soccer tour and he was very much into the Olympic games when they were on.  Maybe all of this has helped or like everything else that Kinson does--he does it on his own time :)

Since Kindergarten has started, Kinson comes home and talks about several friends.  It is hard at this age to meet the kids and their parents to encourage friendships outside of school.  Fortunately for us, Kinson noticed his very best Kindergarten friend and classroom tablemate, Kent, was on our soccer team.  They have been inseparable.  This has helped out tremendously with meeting his parents and their friendship!

Kinson also got to play his very best friend, Carson, Saturday morning!  They did not realize they were going to play each other!!

They have been in the same class the last few years at Hope.  They were sad to be at different Kindergartens this year.  BUT---next year they will get to be together again!!  Carson's parents are moving a few miles our way and will be in the Northshore school district.  It gets even better--- while they are building their house, they will be staying at one of their parents' house which just so happens to be in our neighborhood!!  We are all so excited!!

Sunday, September 9, 2012

Singing away

Cohen has started singing over the last few weeks and it is absolutely precious.  She serenaded me the whole way home from Orange Beach last week!  This is the BEST birthday present I could have asked for!!

  Happy Birthday Mama!!  <-----CLICK TO SEE

Saturday, September 8, 2012

First Progress Report

 We have survived 4 weeks of Kindergarten already!!  It has flown by but we can already see that Kinson has learned so much.
Kinson came home with this in his backpack Thursday-- his First Progress Report!!  I know it doesn't say much but the fact that it doesn't say anything that we need to work on, is great for us.  Kinson is working on mastering his handwriting and beginning easy reading.  He brought home his first book this week and "read" it to us.  It was a basic building book that progressed each page-- "I am _____"  I know he had probably memorized it but he was able to identify words when I asked him to spell them and then really impressed me when I asked for shortened versions of the compound words such as I asked him to spell "tub" when he had the word bathtub in his book. We were so proud of him and he was ecstatic!!

Orange Beach 2012-- Isaac is Coming!!

 We made our annual trip to Orange Beach to celebrate the end of summer and most importantly--My Birthday!!  The trip has grown the last 2 years, we gained my Aunt Deborah last year and this year my Uncle Mitchell joined us also.  The more hands the better when it comes to keeping my kids entertained and happy!
When we left on Friday there was a Tropical Storm pounding the Florida Keys but we figured it wouldn't bother us any.......more about that later!
 We love all the amenities at the Caribe.  Especially the zero entry pool and the slides.  Kinson has mastered some swimming skills but is still a bit surprised at the end of the slide and wants someone there to catch him. 
Both kids absolutely LOVE the water and could stay all day.  And they did!
 We did venture to the beach Saturday afternoon but had to stay on the shore due to the very rough undertow.  Within 10minutes the undertow had taken Nana's sunglasses (after an attempt with the boogie board!), Cohen's bucket, and Kinson's goggles.  So we kept the trip short, but we needed to say we actually went to the "beach", right?!?
 Attempting to build a sandcastle together.  Kinson got quite frustrated with Cohen.  He was trying to give her directions and it was difficult for her to hear him so she just would bring water back and forth and dump it wherever-- he was quite mad!!

 Back to the pool where they could be free to roam and play!
 This is where the boys preferred to be!  Bear could indulge in adult beverages and Kinson could swim and let the current carry him.
 Taking a break and contemplating life with Uncle Mitchell :)

 Throwing the football with Papa
We did end up having to cut the trip short a day.  The governor issued a mandatory evacuation Monday morning at 8:00am and it was so hard to leave.  It was a beautiful day but they had already closed the pools and put up double red flags at the beach.  We decided it was best to get on the road and try to beat the traffic.  In the end, we got a few days at home where the kids went to school and we were able to actually get a few things around the house accomplished!  Overall a good trip!

Sunday, September 2, 2012

First Days......A little Late

A little late seems to be the story of my life right now!  Always playing catch up.  So here goes :)
Kinson started Kindergarten at Northshore at the beginning of August.  Although he was bummed to end summer camp, he was quite excited to start Big Kid School.
We went to Open House the night before where he got to meet his teacher, Mrs. Moore.  He fell in love with her and the classroom immediately. 
 He was determined that he was going to school all by himself.  The first day for Kindergartners started later than the other grades due to parking.  We had to explain to him that there was no car-rider line that morning and we had to take him to class.  He was not very happy with us!
 After getting him in the main door, he told us we could leave and we told him we were walking him to his class.  His response immediately was to tell us that we could stay "way back" from him!!  This is him entering his new Kindergarten world as a "Doodlebug!!"  Not to be confused with the Doo-Doo Bug that he kept calling himself the first few days :)
So far, "Kindergarten is the best thing EVER!!"  He has absolutely loved it and we couldn't feel more at ease with the transition.  He feels extra big bringing his lunch and then a few days we send money for him to buy treats-- ice cream, chocolate milk, and tattoos. Things have definitely changed since I was in school!  His favorite thing is to come home and let us know if he is on "Green Light" and the he has to inform us of everyone who had to move their clip onto yellow or red light!    
And we couldn't forget about Cohen.  She started another year at Magnolia 2 weeks ago.  We were unsure until the week before which class we were moving to or staying in.  It was decided that Cohen would change rooms, to Mrs. Roxanne's class.  We prepared her for  a new room and teacher and it definitely helped that a few of her friends moved with her.  She still asks me every morning if she can go to "Mrs. Ree's (Cheree's)" room but usually she wants to tell or show her something and then she is happy to go to her "new" classroom.  She is remaining on the hearing impaired side and they are still incorporating the association method into her curriculum to assist with the apraxia.  This is all still a learning process for her and her teachers, most students either have one issue or the other.  But we have a lot of guidance from support staff and directors of each department.
Another exciting person has re-entered our world-- Ms.Taneil. Taneil was Cohen's Early Intervention Therapist that came to our house and her preschool starting when she was 11 months old, before we even knew what was exactly going on with her.  She was one of the most vital people in our early detection of Cohen's hearing impairment.  And now she is the Speech Therapist at Magnolia!!  We were so excited to get the news early summer that she and Cohen would get to be a team again :)

Wednesday, July 4, 2012

Dance Recital 2012

Cohen did her first year of dance and had their performance last month (yes, I know it is late!)  As always, Cohen marches to her own drum :)

She wasn't really into looking at audience during her first performance.  But this is way better than dress rehearsal went.  She screamed because the stage lights were too bright!
Still not sure that she is into this!
She looks at her, "Are you really doing this!?!"
At least it is over!!
She loved the attention afterwards :)
This is one of the best family pics we have ever taken! 
My sweet Momma and her "new" hair!
Can you see her hair?  Bear really is the best daddy ever!  I can't do too many things with her hair but he is patient (most of the time) and fixes whatever I tell him too!  He braided her hair and then put it in a side-pony!!  She had the best hair there :)
Sweet Ms Courtney was soooo patient with Cohen this year.  Cohen thought of her as her "personal assistant" at times :)  Cohen loved hanging out with the older girls and being included in their fun stuff!  Can't wait for next year!!