Where did my sweet baby go?

Cohen has always been our "easy" child.  Yes, I know that she is involved but she has always been a very good listener and followed the rules.  Things are changing quickly.  At first we thought it was some frustration in communication because we are constantly having to remind her to "use her words."  But now I am thinking that this is typical kid behaviors and for that reason (and that reason only) can i be thankful for these behaviors!!

Thanksgiving night after she was put to bed Cohen decided to express her artistic side.  The funny thing is, it took my half a day Friday before I realized what she did.  She came downstairs Friday morning with marker all over her hands and face---which isn't all that unusual :)-- and when asked what she did, she said, "I don't know!"  That little stinker did know!!

Thankfully, the magic eraser took care of it!

Mrs Amanda's class put on a performance of the "First Thanksgiving" the week before Thanksgiving and Cohen was the perfect "Dancing Feather."  

Squanto and his Indian tribe

The friendly neighbor helping the Pilgrims!!

Apraxia and more

I always link into the "Kelly's Korner blog" when it is for special needs moms.  I know how hard it was when Cohen was first diagnosed to find any other families going through what we were going through.  If anybody wants to visit the exact post that I use to link, click Hearing Impaired and Apraxia.

That post is from 2 years ago and unless you want to read through all the other craziness and exciting posts, I will add a little update.  Cohen has started her 4th year at Magnolia Speech School and she has far surpassed anything we thought possible.  She has an endless vocabulary (no exaggeration here).  Her speech is still unclear at times but can be given a few cues and she can correct it some.  Now there are some times when she tells me something and I have absolutely no ideas what she is saying.  It is usually when she is telling me about something that happened when I wasn't around and don't know the context to figure it out. But that is happening less frequently.  She is up to 24 sounds in her sound book.  She has these sounds mastered on their own.  However some of those sounds she has difficulty saying in different parts of words--initial, middle, or end.  This is where you really see the apraxia-- she can isolate the sound but can't say it in a word.  She continues to get speech therapy 3 times a week, audiology 2 times a week, OT 2 times a week, and Auditory-Verbal therapy once a week.  I know it sound like a lot but luckily it is all done at Magnolia!
Her main struggle at the moment is socialization.  She is a very social child but struggles with typical conversational dialogue.  This has not been an issue before but as her peers get older, they are recognizing the difference.  When Cohen is in a situation where she is unsure what to say or how to answer, she will just state a random sentence, for example-- Cohen on the soccer field runs up to the coach during the game, she doesn't know what to tell him so she says, "I saw a black dog yesterday."  She doesn't expect a response and usually has moved on to something else.  She has shown some improvements this school year and I believe it has to do with having 2 other girls in her class this year.  She is used to having all boys so I think this has helped.
Her hearing still fluctuates from mild-mod loss and she is pretty good with letting us know if she is having difficulty hearing.  I really don't think that she misses much-if any!  She is now responsible for taking them out, opening battery doors, and putting them back in when she wakes up.  I never thought we would get to this point!  I also never thought I could trust a 4 year old with devices that are worth thousands, but she can do it!!
As far as the hypothyroidism, it has been controlled very well by Dr. Moll.  We have upped her dosage in very small increments over time to keep her in "her" range.  It took time and some frustrating discussions with the drs for everyone to get on the same page as to where Cohen functioned best.  TSH, T3/4 levels are not as black and white as other lab values.  What might be considered "normal" levels might not be where Cohen feels best.  This took ALOT of time, bloodwork, and observations to convince the drs that I could tell where she felt best.  But like I said, we have controlled it well recently and hope for that to continue.
It has taken us so long to get to a this point and honestly, I never thought we would get here.  I am now struggling with decisions that I never put a lot of thought into because we never thought we would get to make them!  We are starting discussions and looking into schools for AFTER Magnolia.  If you would have told us she would mainstream at anytime before junior high, I would have laughed at you.  But knowing she could attend First grade at Northshore or a private school near us, excites us.  It does.  But it scares the you know what out of me too!!

It's been awhile

For those who read for updates on myself, I will make it quick!  I have my 4 month follow-up PET/CT Scan tomorrow morning.  I don't have any reason to think that it might show that I have any change for the worse-- no enlarged lymph nodes, night sweats, or unexplained fevers-- but I am kind of nervous that things are going on.  Any extra prayers would be appreciated-- prayers for good reports and for my apprehensions!  I follow-up with Dr. Elkins Monday afternoon and will be sure to update.  For those who read the blog to see my sweet, precious kids, please continue :)

School is back in full swing and somewhere between dance, soccer, gymnastics, karate, cub scouts, and fall baseball, we DO actually go to school :)  Kinson is doing great in school, loving reading and spelling, but requiring a little bit of reminders that his behaviors might be a little too wild for school!  Cohen is transitioning a few of her regular lessons to a different version and if you know Cohen, then you know that she doesn't change well.  It has been rough lately but I am sure like every other thing, she eventually adapts.   

Kinson is rolling through the karate belts!  He competed this weekend a received his low purple belt.  As wild as he can be, it amazes us how focused he can get during karate positions.  The instructors use his outgoing personality as an asset and he leads his group.

My sweet little Tiger!  We have had this uniform for 3 years and it is just now fitting her right.  She is the cutest little thing when she puts this on.  She only knows to say, "Geaux Tigers!!" and will say it over and over.  When I picked her up from school, she was showing the little boy beside her, her "cheerleading panties" and informing him that she wears 2 pair of panties with her cheerleading outfit!!  I am trying not to worry about that yet!!

Have you seen a more beautiful group of girls!?!  These are my nieces, cousins, and sweet sister-in-law and this was a few weeks ago after eating at Babalu.  My cousins live in Virginia and we only get to see each other once a year (which is nowhere near enough!) so when they come we pack a ton of fun into a few days.  I know they read my blog---- WE MISS Y'ALL!!!

Obligatory "First Day" post

Just like the rest of the South, my kids are back in school.  And let me just say...........we were ready!!!  This summer wore us out.  I am not sure if it because we really only get 5 weeks out (Cohen goes extended school year) or if we tried to cram a whole lot into it.  Either way, we are glad to be back and getting into a routine.

Cohen is at Magnolia for her FOURTH year!!  Can you believe we started this journey 4 years ago?!?  Some days it seems like eons ago and other days it seems like we just started.  She got a new teacher for her, Ms. Amanda.  Cohen was excited until we got there.  At that time she realized not all of her friends came with her.  We talked a lot about how 2 of her very dear friends were going to "Big Boy school" and she understood, she also understood that she would move to the next class....well, because that's just what you do next.  Cohen can understand concrete rules.  But what devastated her and was hard for her to comprehend was why a friend did not move up and went to another room.  Not sure if we have grasped it yet, but like everything else---on to the next thing! 

 

And this little rascal started First grade!  Kinson got a new teacher to his school, Mrs. Hicks.  We had heard wonderful things about her and were eager for fresh ideas and maybe better ways to approach his behaviors.  He was also ecstatic with his classmates-- he was reunited with a few favorites and also some new friends.  So far, he has amazed us with his eagerness to learn and if you can believe it---he requests to read!!  Bear just bought him a chapter book and this is a HUGE deal according to him!

Like we need a new hobby, but I am really thinking this one might be good for him.  It is fast paced, not team oriented (meaning he can't blame anyone else for his performance), and convenient.  Bear is teaching him in our neighborhood for now.  Come spring we will decide how serious he wants to be!

Just a funny---every Sunday before Church, she wants her pic taken.  I know I have said before, she loves Sunday school and especially the dressing up part!!

So far behind

Summer is flying by and we are sure enjoying it.  I might be all over the place, but bear with me :)

Do you think they are starting to like each other?  Maybe......just a smidgen! Cohen has become obsessed with Sunday school and is the first to have her clothes picked out---this usually occurs midweek--and the teachers are so impressed with her capability of recalling the Bible verses........from every class she has ever attended!!

It finally happened.....Kinson lost his FIRST tooth!!!  At his last check-up, Dr Tiffany warned us that Cohen might lose some teeth before Kinson.  Well fortunately, Kinson had a tooth start wiggling Memorial Day and we finally pulled it last week.  He was so excited.  He already had "tooth fairy list" made up that he was going to leave her so she would know what he wanted the next time.  Uh--it's not Christmas, child!!  Needless to say, he got $5 and was ecstatic.  

Kinson is starting his 2nd year of karate.  I think we have found a perfect match for him.  His Sensei says that he is the leader of the group and does well keeping the others in line.  He tested and received his "high" green belt last weekend.  (If you are curious about the belts, they don't start solid belt colors until next year.)

It was a week of firsts---Cohen had her first date :)  Her and her sweet friend, Isaiah, went to see Monster's University.  They are so sweet together an the love for each other can not be denied.  Cohen still hasn't mastered sitting through a movie but has made a huge improvement with it.  

There are nice people everywhere.  I am overwhelmed with the generosity of some people.  Mr Barksdale, a grandfather to a fellow Magnolia Speechster, invited a few kids and their families to be his guest in his company's sky box at the Mississippi Braves game.  It was so special for some of us, as this might have been a rather stressful time if we were contained to a regular seat, the loud noise, and fellow fans.  The kids had a blast being spoiled with popcorn, ice cream, and jumpers.  My kids will never understand watching a game any other way now!!

It takes Cohen awhile to warm up to you and she usually chooses the quietest person as her friend.  The bigger kids had gone to the jumpers and the moms and Cohen stayed behind. While the moms were catching up, Cohen decided at that time to pick her prey :)  Mr Barksdale was great company for her.  He was so patient with her and she was enthralled with him.  

These kids were so excited!!

Cohen's Crew made its annual appearance at the Magnolia Speech Sprint this year.  The adults survived and every single child placed!!  Graham won 1st place overall, Kinson won 3rd in his age group, and Reid and Mackenzie each won 3rd in their groups.  As always, it is such a fun and easy way to support a great cause.  

The forgotten Mothers Day....

I have had this as a draft for awhile but never finished!!

I had a wonderful Mother's Day and the kids and Bear spoiled me as usual with furniture for our outside balcony.  The kids made tons of crafts and cards for me school that they were so proud to give me throughout the weekend.  Monday morning came around and I was loading up Kinson's backpack, I see a pink paper stuffed in there.  I pulled it out and looked at it.  I asked Kinson who sat at the bar eating breakfast, "Why didn't you give me this card?" His response, "Oh, don't worry about that one, I didn't mean it!  I am not going to do that stuff, I just wrote it because everyone else was!!!"

If you can't read it clearly, it states that he will "help mama with______" garbage, folding clothes, go get mail, etc.  Not sure if I should be worried at how easily he gave in to peer pressure :)

Chat with Kinson

Kinson has zero filter when it comes to speaking his mind.  And lately, we haven't been able to keep a straight face when we are talking to him!  Kinson has been seeing a therapist (long story for another time) for the last few months and he has really enjoyed 1 whole hour of non-stop talking and attention each session.  I get to sit in there and listen as they "talk" while they are playing, this gives me an opportunity to learn how to facilitate some modifications and coping skills she is assisting us learn.  Kinson is very comfortable with her and again, speaks whatever comes to his mind.  Here are a few sneaks:

Mrs. L:  Kinson, when we get mad or frustrated we don't need to kick and scream and throw a fit.  We need to use our words
Kinson:  I know, I know.  You mean like say sh*t!!

Kinson was grabbing himself a few times throughout the session.
Mrs L:  Kinson, do you need go to the restroom?
Kinson:  No, my papa says its ok to grab my pee-pee and move it around.  Sometimes you just got to do it to make it feel better.

Mrs. L:  Sometimes we need to try and be brave.
Kinson:  What's brave mean?
Mrs. L:  Braves means doing something even though you are scared to do it.
Kinson:  Oh, you mean like last night when I was afraid to draw on the bar stool with the sharpie because I was afraid I would get in trouble, but I did it anyway!  That was me being brave!!

Here is just another little funny!  Kinson photo bombed Cohen's dance pics :)  

Praises

These are the sweet faces sending me encouragement Wednesday during my long day of tests.  The tests weren't that bad but it was a long day of no food or caffeine and that led to grumpiness and headaches.  We got to meet with Dr Fayad on Thursday for the results.  We got to speak with a intern first who explained what has been going on better than we had been in the past.  Basically, they were able to cut my tiny little lymphnode into 100 sections to make slides.  In those slides, there was 1 lymphoma cell.  Yes, just 1!!  He went on to explain that this is not the typical way that malignant cells present, cancer cells are usually found in pairs.  So this in itself is an anomaly and the reason for the "in situ" part of the diagnosis.  And again, this was only 1 lymphnode so this might not be the actual case in all the rest of them.  But The good news is that in the last 4 months, my reactive lymphnodes were still there but SMALLER!!  At this point, there isn't a lymphnode that is available to biopsy-- no surgery next month!!  Dr Fayad is comfortable with me being seen at UMC every few months with a scan in 6 months that he will review and unless something comes up, not returning to Houston for a year.  So many prayers have been answered and although nothing is resolved, our situation has gotten so much more better and tolerable.  

We are so excited by this news.  I still meet with my drs at UMC next week for their opinions and if they agree with his plan.  I know it is still the "watch and wait" protocol and at first I was apprehensive about waiting so long but I am becoming more at ease with this approach.  It couldn't have come at a better time.  I finally feel like we can plan ahead for the summer.  I have been saving all my PTO hours for dr appointments and possible surgeries.  I will be so excited to have a day off that involves some fun!!  I know that so many have been praying for us and I truly feel them all.  God has blessed me in so many ways and shown Himself to us constantly throughout this.  There have been many hard moments but honestly I can count a few more good moments that might not have otherwise happened.  I am meeting with Dr Ahmad Monday and Dr Elkins the following Monday an will be sure to keep everyone up to date :)

The fun stuff

I know we have a lot of things going on at our house right now--Don't we all!!-  but we do have a lot of fun times too! 
2 of my besties from way back getting ready for the Color Me Rad race.  It benefited Batson Children Hospital, which has been a vital part of Cohen's diagnosis and interventions, so we were glad to participate!!

Not to mention it was lots of fun to get all messy too :)

Hanging out with the best friend Carson at the bowling alley.  Note to self:  6 year olds can be very competitive!!

Easter morning before church.  Can't believe they actually touched each other!!

Cohen had had enough at this point!!  (Please diregard the dead plant on the porch!!  It has since been replaced :))

He will absolutely kill me one day for this picture!!  But this is my child's personality captured!!  He is so full of life and wants everyone around him to know exactly what he is feeling-- good or bad-- and just be part of it with him!  This is him singing some Luke Bryan before bedtime!!

Now she is Miss Prim and Proper when it comes to her dance style!!

Working out with me!  She is doing her reverse lunges and watching Shaun-T and his "clean belly" as she calls it!!

She requested her picture to be taken before school one morning.  She is getting to be such a ham when it comes to pictures.  She SCREAMS "Cheeeeeeeese!!" at the top of her lungs when she wants her picture taken :)

Leaving on a jet plane....

headed back to Houston!!  This is a late update but have been crazy busy with baseball, soccer, work, etc.  But just days after I posted to please pray that we would hear from the Drs at MD Anderson---I DID!!  Dr Fayad himself called me Friday morning to let me know that he had already scheduled for me to come back April 24/25 for some more scans and a face to face visit the next day to discuss results and plan.  Believe me, I was prepared to fight if I wasn't going to get a face time follow up visit.  I have scheduled at PET scan Wednesday morning, a CT scan that afternoon, and follow up Thursday afternoon.  It is crazy that it is such a big facility and I have to have these tests done separately because UMC has a FABULOUS state of the art CT/PET scanner combo!!
So what do we know so far?  When he called, I was down the hall with a patient and lost all train of thought but I do know that MD Anderson was able to get my cervical lymphnode from Mayo clinic and biopsy it.  Good News/Bad News-- inconclusive!!  Well not really technically inconclusive but 2 different 24 letter words that are unable to be pronounced and one means malignant and the other unsure.  Yep, even they can't determine it.  However, it did state high probability of follicular mutations and needed close follow-up.  While there, I had over 50 labs done, thanks to my virtual chart I know this :)  Several of the labs were not in normal range and he explained that because of the labs and in combination with the pathology reports, that follicular lymphoma is likely.  So he would like to rescan me next week and compare with my previous 2 scans for any changes and schedule another biopsy in May.  This biopsy will be CT guided, not sure what exactly that entails but it is on my list to ask.
So again I ask for a few specific prayers-- safe travels, fast scans (because I can't eat before any of them and my last one is at 4:00), and clarity on the next step.  The next step, as in the biopsy, is very scary for me.  My surgeon here is very cautious and I appreciate that considering my limitations and I want to ensure that I relay these same concerns to Dr Fayad.  It means so much to me that there are so many people keeping us in their thoughts and prayers.  Never did I think, I would be in this position but it has been eased with all the support.  I know I will have lots of downtime in Houston so I will be sure to update after my appointments!

Patience is a virtue....

and I am not sure that I possess this characteristic :)  I wish I had a real update to give but all I have is a bunch of fancy labwork, written pathology reports, and MRI results.  I am not sure how I feel about this "virtual chart" world that I am experiencing right now.  I appreciate the availability of my results especially since I am followed by so many doctors and I can print them all and bring them with me to appointments.  However, I hope doctors aren't using this as an out to actually communicate a professional interpretation.  I have emailed and phoned nurses and doctors, as they freely gave out nice handouts with who to call and email with any concerns, over the last few weeks and I have heard back a few answers, "your results are available online," "did someone ever contact you regarding your last email," and " I will see the dr tomorrow and I will call you right back."  I was forewarned that my lymphoma tests might take up to 2 weeks to get back--well thank you virtual chart, I know they have been complete for 10 days now.  

I have forwarded many of my tests to the endocrinology team at UMC and they feel that the adrenal nodule is actually more fluid based since each scan show fluctuation in size with no actual mass shown.  This is a good thing.  It will continue to be monitored by ultrasounds at UMC.  The only other endocrinology lab that was really out of whack was my Thyroglobulin levels.  Normal lab value is less than 0.9 and mine was 55.  Don't go researching it or you will think we are back at square one with Thyroid Cancer.  Thankfully that is not my case.  Elevated thyroglobulin levels can also indicate uncontrolled Hashimoto's.  At the moment my TSH and other thyroid labs are still fluctuating as the remaining quarter of my thyroid tries to do triple time the work and eventually burn itself out.  Through this we are trying to get my meds straight.  This can be a tedious process and the side effects of dosage change aren't fun so it needs to be done in small increments.  So far, I have upped my dosage twice and have tolerated the side effects okay.

Why haven't I done this with my lymphoma labs and gotten the oncology department at UMC to interpret?  I went to MD Anderson with hopes of some clarity.  I want to hear their interpretation before I have UMC interpret.  I am not saying that I don't value UMC's opinion, I do!  I have complete faith in Dr Elkins and her team.  I would like to hear Dr Fayad's impression and plan and then bring it to my team hear and see what conclusion we can come to.  I say all this with hopes that I will hear from MD Anderson soon.  

Yesterday, we celebrated Easter and I can say how I have seen the last few weeks in a new light.  I attempted very hard to keep to my giving up of complaining and besides my medical issues, it hasn't been that bad to get into good habits.  I have began to appreciate small things.  There has been a few late nights of Mario memory, dancing to Luke Bryan CD's, and just plain on cuddling.  However, I did have a special prayer for clarity and patience.  God heard me.  He knew I was beginning to question and falter. Today at work my general physician called me because she had me on her mind!  Let me also tell you, she was not working.  She had her gallbladder removed Friday and was recovering but just wanted to check in with me. I haven't seen her since September and she has changed clinics since then.  I was unsure how to get all my new info to her without making an appointment.  Well thankfully, I haven't had to make an appointment but Bear has ad he gave her the cliff notes as to what has been going on.  She had requested my UMC records and had reviewed them and felt like I was receiving superb treatment and agreed with the "gray" area.  I was able to just talk to her and she explained that something was going on at the follicular state of cellular formation and all of my labs and biopsies that have all been abnormal can be indications of 1 of 2 things-- Autoimmune process and Lymphoma.  Even though she wasn't able to clarify my diagnosis, she clarified that it is hard to interpret and nothing has been left out.  I needed to hear that today.  We have done everything, now we just wait.  

The Waiting game

And now we wait!  I did have my MRI Friday and it was painless but different.  I always go into these tests thinking that I know what to expect but it never works out that way.  An abdominal MRI is not like regular one.  Because you are always breathing, therefore muscles are moving, the pictures can not turn out so they put a monitor on you that detects your breathing pattern and only takes pictures as you exhale.  And at times they need to take a longer segment of pictures and a recording will come on that gives you instructions on breathing and holding your breath at times.  It was a little more stressful but it passed the time quickly.  And there are times that I enjoy these tests.  Why?  Because this particular time was the first time I had been alone in a few days considering we were traveling.  I was also very anxious about the results of this test just because it was something I was not prepared for.  Lots of praying went on in the little tube :)

Hopefully I should hear the results by the end of this week by email or phone call from both the MRI and bloodwork for my adrenal gland.  I tried to follow up with my endo here but she is out of the office until next week.  Again, I shall wait! 
I was impressed with the time the drs gave me there and just the vast size of the facility amazed me.  They printed me out a crazy schedule that everything that I could imagine needing, including instructions for eat/not eating, medicines, etc.,  ready to go as soon as I got there.  Even though we threw the schedule away after the first appointment because everything changed, it was still pretty organized for as many people as they see each day. 

What else did we do in Houston?  We brought Kinson along with us to sight see with Aunt Deborah while Cohen hung out in Mississippi with the grandparents.  I am still not sure which kid got the better end of the deal--- they were both spoiled rotten!!  Here are a few pictures from my phone:

This one isn't from our trip but from Kinson's first field trip in Kindergarten.  We went to see a play that was Little Red Riding Hood and transitioned into the Three Little Pigs.  It was cute and very funny, the kids loved it.  I enjoyed getting to spend sometime with him and meeting his new friends. 

A little less gray

I apologize for not updating when we finalized plans but literally we had 4 days to get work, kids, and travel arranged.  But everything fell into place.  So here goes:

Today was the day we had been waiting on, our appointment with the doctors at MD Anderson.  Over the last few weeks, we have been back and forth with deciding the appropriate department to be seen in.  Last week after receiving my slides and reading them it was determined that I needed to be seen in the endocrinology department.  We flew to Houston last night and had scheduled 2 full days of appointments setup.  After registering for our appointment we took our seat and waited and waited and waited.  Finally when I asked, we somehow never got checked in!  So while they did that they sent me to the lab where they drew 10 vials of blood.  Then back to the endo department where we were immediately put in a room.  The fellow dr came in and let us know that there wasn't any reason that we should be in the endo department. WHAT!?!  But they would be willing to do a workup on the 4mm nodule that I have on my adrenal gland.  WHAT nodule!?!  Apparently on one of my previous scans it was noted that I had a small nodule on my adrenal gland which she would like to check in to but really wants my other issues worked out so she called Lymphoma department and pulled a few strings to get me in.  Today!.  

So down a few floors we went and got to meet Dr Fayad.  He was very nice.  The mix up came because MD Anderson was not able to get my slides of my lymphnode biopsy because it was still at Mayo Clinic.  So therefore they only saw my thyroid biopsy that has no cancer in it.  However, he does agree with the diagnosis that we received from Mayo Clinic.  He explained that Follicular Lymphomas can be hard to diagnose and even harder when at the "in situ" state.  But what he wanted us to understand is the just because it is "in situ" in one area does not mean that it is not active somewhere else.  The only way to determine that is another biopsy.  We all know the problem with this-- my lymphnodes are not accessible.  He does not feel like risking infections or my health is worth a diagnosis at this point.  He also felt that if we did another scan right now that enough time has not passed since my last one and he is afraid we might overlook small changes whereas if we wait a few months a more significant change might be seen (of course it can still remain status quo).  He ordered some blood work to check for mutations to my BCL2 proteins in my blood that could also give us a better idea if it is active or might become active.  He also reassured us by telling us that if we decided to do treatment at this point, the side effects are worse than the actual cancer right now since it has been proven to be slow growing/low grade.  This made me feel much better about the waiting game.  So the plan is to return in May (when my next scan is scheduled) and do it here in Houston and if needed attempt a CT guided biopsy.  Also, I am scheduled to have an MRI of my abdomen tomorrow morning to check out this nodule that I have.  The follow up regarding that will be by phone and my bloodwork will be followed up by emails with Dr Fayad.  

The day started out rough and my not complaining was tested to the maximum limit but so far we have felt like they have been as thorough as they could with the information they have been given.  

But there is so much more to this trip than dr appointments that I can't wait to post about but it will have to wait as I am EXHAUSTED and have to leave at 6:30 to be at my MRI.  Thank you for all the prayers as we have felt them all and I know that even though we have not gotten statements saying "You have _____ and you will do _______ to treat it."  I still feel like we are getting closer and that the explanations we have gotten has allowed me some reassurance with the plan.  

The Family Portrait....sort of

This came home in Kinson's backpack this week.  And in case you are wondering the significance, we are a family of 4!  But to make sure what I thought in my head is the same as what Kinson drew, I asked him to tell me who is in the picture.  And I was correct--Mama, Kinson, and Papa.  He did acknowledge that he did not put Cohen in the picture but acted like it didn't matter.  I know at some point every kid thinks it would be better off being an only child and not having to share your parent's time and attention, but this really bothered me.  And I am sure this is just one of the many times we will go through the typical brother/sister relationship struggles. But I really hurt for Cohen.  Until recently, it has been hard for the 2 of them to have any relationship that had any communication involved other than Kinson telling Cohen what to do.  Well now that he understands her more, he doesn't always like what she has to say to him and that she stands up for herself!  And to him it seems like she gets to go to this extra special school (and is really is that special) and that it is so much more wonderful than where he goes because she is constantly bringing home projects and getting to dress up or bring stuff to go along with the theme for the week/month and she gets all this fun homework.  We had a long discussion about it that never really went as planned but he finally said he was mad at Cohen because she did not bring him Hershey Kisses for Valentine's (another school project that she made).  I know at that point he was just fishing for an excuse but we still talked about it.  We also talked about how his favorite 2 people in the whole world are his Uncle Robert and Uncle Bo, who just so happen to be his Mama's brothers.  He knows our relationship but I think still can't grasp that "big people" can be brothers and sisters.  But I explained to them how all through the years we have fought and played together but most importantly how much we loved and took care of each other, even as "big people."  Do I think I got anywhere we this crazy little boy?  I have no idea :)  but I am definitely making more of an effort to talk about family with him and the importance of it.

40 days...

I have given up many crazy things in the past years but this year was hard for us to think of things to "give up" this year for Lent.  We have always been pretty healthy but had a few areas that could be "tweaked."  But this year, we have made a big effort to overhaul the unhealthy and it took effect long before Lent and I sure want our new habits to stick with us long after Easter.  So I decided to look within myself.  

I think some things people say are out of habit as well as just conversation.  I also believe that you can can get "stuck" in a mind set that also drives these conversations.  With everything that has been going on, I have tried my best to have a positive attitude but I think all my energy and effort went there!  So now I have found myself being a big complainer.  I work in an atmosphere where majority of my patients complain about something--the nursing home life, food, the news, etc--, also Medicare has been constantly changing putting constraints on my profession that make it difficult at times to remember why I do what I do.  I was feeding off all this complaining. But That's just part of it.  I complain about the weather, food, politics, you name it and I feel like I couldn't say a nice thing about it!!  So I decided to just stop.  I am going to try my hardest to not complain for the next 40 days in hopes that this will give me a new outlook on things other than just my health.  Day 1 was a major challenge and I have had to catch myself ALOT :)  but I am sticking with it.  It has now been 5 days and I can tell a HUGE difference in just a few things I would normally repeatedly say throughout the day, "I'm so tired", "I hate the rain!" etc.  Even though it has been challenging, I can definitely say it has been refreshing!

****MD Anderson Update****

This has been my biggest challenge to stay positive about the last few days!  I heard from them Thursday as they tried to set up my appointment with the endocrinology team.  I kindly told them that I have no need for an endocrinology team, I have that here.  They said for "thyroid cancer."  I also reminded them that if it was indeed "thyroid cancer" than it was a lymphoma.  So I was then referred to the Lymphoma team.  They could not set up an appointment for me because I did not have a DEFINITE lymphoma diagnosis only a high probability.  I said yes we knew that and that is the whole reason for me coming to MD Anderson.  I have now had 4 biopsies that have each been read by 2 hospitals and the only ones that agree was that there was no lymphoma cells in my bone marrow.  The others all conflicted with each other.  It was referred to the medical director.  I then received a call from pathology and now they have decided to have my actual biopsy slides shipped to MD Anderson clinic and be read by their path team.  So now I am a patient of the "suspicion of cancer" clinic.  I am thankful for this mix up :) (give me some credit for trying!!)  I think this will save a us a few wasted appointments when we get to Houston. Hopefully, we will get an appointment for sometime in the next few weeks.  The were aiming for next week but we are hoping for early March.  Will keep y'all updated! 

The gray area.....

I am not sure about you, but I always thought that biopsies were pretty cut and dry.  You either have this or you have that, you have it or you don't.  And I like to think that after 9 years in the medical profession that I would have known otherwise.  I went to see my endo for my 3 month follow up and to check my levels.  I was also scheduled to see the oncologist that afternoon.  I knew there was a chance that the endo could have my results but I was unsure if I wanted to hear it from her because she really couldn't give me any options on how to proceed.  But things have a funny way of working out.  

One thing I LOVE about UMC--the interdisciplinary approach.  These doctors all talk and know each other.  So I shouldn't be surprised that during my endo visit my surgeon busts up in the room!  But it was very refreshing to have both in the same room and hear them talk it out.  He had my results and it was very frustrating to hear that the pathologist could not give a definite diagnosis.  He saw atyipical lymphoid cell hyperplasia that could be cancerous, could be precancerous, could be normal reactive nodes based on my autoimmune process, or just overgrowth of cells.  I think he covered everything it "could" be.  My doctors were so frustrated and even though we had not spoken with the endo team at UMC, it seems that the problem lied in the pathology department.  The decision was made that because of the rarity of whatever is going on, we needed to move to a bigger, more specialized facility-- MD Anderson.  The surgeon also agreed that taking out any more tissue/organs was not an option, because we would only get the same results.  

That afternoon, I met with the oncologist and she agreed to the no more surgery and also felt like it was very "gray."  Her plan is to rescan me in May and see if there has been any more progression and if not, than this would be the routine every 3-4 months indefinitely until something did progress.  She did request to send my biopsies to Mayo to get a second opinion but doubted it would show anything different.

I think I was content with this plan, especially since I knew we were still planning on going to MD Anderson.  However, be careful what you ask for.  I get a phone call Friday morning from the oncologist.  She was only going to call me if Mayo results were different.....and they were.  They actually gave me a diagnosis---Follicular Lymphoma In Situ.  If you go look it up BE SURE TO INCLUDE the "in situ" part.  It is very important.  The diagnosis is a fairly new diagnosis recognized by the medical world, like less than 15years.  UMC has only seen 3 patients with this.  EVER.  From my understanding, it is cancerous cells that are inactive.  Will they ever become active?  That is unknown.  Again, the "wait and see" with periodic scans method is what is recommended.  

Nothing has changed.  We are still planning on getting another opinion and if they agree, than maybe we could get a better picture of what to expect.  My next scan is also already scheduled-- May 6.  In the meantime, life goes on.  Soccer has started up, dance is in competition mode, and my baby boy turns 6 tomorrow.  3 months ago, I wasn't sure what treatments I would be taking that might interfere with these things.  I am so thankful that there hasn't had to be any yet.  That I get to be part of everything and that I feel a sense of normalcy returning.  

We should hear from MD Anderson this week and will be sure to update when I do!

2 surgeries down!

This girl is a pro when it comes to surgeries!  No medicine needed before hand, she was content to just hang out and show the nurses how to play her Nabi!  We have had the same nurse all but 1 time that we have had surgery.  She saw that we were coming and switched with a nurse just so she could have Cohen.  She is always so sweet to us.  She is also the one who calls every so often to let you know the procedure started, how it is going, etc.  Well when she called to let me know it started, she was laughing because when they rolled Cohen back into surgery she took the mask from them and told them, "I can do it."  And held the mask to her face and put herself to sleep!

Dr Carron was very pleased after getting in there and draining all the fluid out of ears and repairing the left ear drum.  He went ahead and placed "T-Tubes" in both of her ears.  These tubes are actually sewn into her eardrum where as previous tubes were "pressure" based.  Hopefully, now that they are more secure, the sinus pressure will not push them out like in the past.  He also did a very minor sinus procedure to decrease her nosebleeds that she has been having.  He was also laughing afterwards talking about how amazed the team was in her behavior.  She had yet to shed a tear even after waking up.  When I finally got to go see her, she was all tucked in with one tear rolling down her face.  I asked her what was wrong, she said "My nose itches" and held up her finger that had her heart rate sensor on it.  She was mad because she couldn't scratch  it!  She continues to amaze m daily!  That girl came home like nothing as wrong and hasn't stopped yet!

1 down, 1 to go this week

 I did have my surgery this morning.  I love, love my doctors and they treat me so good when I am there.  I was first case and there at 5:30, asleep by 7:30, in the car by 10:00!  I have never had an outpatient surgery at UMC and I was so glad they let me go as soon as I got up.  Dr Ahmed was able to remove 1 lymphnode.  Not sure how I feel about it yet......I was hoping that they could get a few more to compare but I understand the reasoning.  I just think if the biopsies of a few lymphnodes came back benign I would have been more accepting of possibly monitoring for a bit longer.  It will be a hard decision for me as to what should be the next step if the doctors suggest moving forward in the diagnostic process.  

As far as recovery, I am recovered :)  This really was the easiest procedure so far---easier that the scans!!  I came home and slept a few hours.  This morning, I told Bear how excited I get when it's time for surgery because I get "real" sleep.  It's the only time I get restful sleep with no interruptions or alarms!!  However, tomorrow I am sure my neck will be a little sore from the positioning during the surgery but I am sure tolerable.  The incision is bigger than I was anticipating but it is further around my neck so at least it isn't too close to my other scars.  

I will see my endocrinologist Monday for bloodwork and check up but not sure I will get any results by then.  I will see the surgeon February 4 and should have results by then unless I see the oncologist earlier.  

So what's the next surgery this week?  Well the flu hit our house 2 weeks and Cohen was unable to have her surgery so it was rescheduled for Thursday.  It kind of worked out for the best since I was home anyway.  We can't wait to see the difference in her after surgery.  Her little ears have just been hurting and we are hoping this will help.

Will keep everyone updated!

Deductibles met...already!?!

January has started out with a bang!!  And low and behold we have probably broken our record with shortest time to meet our medical deductible :)  

I knew we had a week full of dr appointments and hopefully get a few questions answered.  Well, we all know that Kinson couldn't be left out!  He felt like he wanted to be added to the dr schedule this week so he invited the flu to invade our house.  It was way more rough than I was prepared for.  Luckily, he is on the mends.

Cohen met with Dr Carron Monday morning.  Her left ear tube has been out since May and sat in her canal for a few months along with a hole in her eardrum.  In October, it finally fell out, the hole healed, and the eardrum had healed retracted.  Dr Carron wanted to give it a few weeks to see if it would stabilize itself.  Well in true Cohen-fashion, it did not cooperate.  So she will have T-tubes (permanent sewed in tubes) placed in on Friday.  After 6 surgeries for tubes and now knowing she will continue to need them for several more years, he decided a more long term option was needed.  I had heard about these from several of her team members and hoping this will help the drainage issues in her ears.  While she is under, he will also carterize some blood vessels in her sinuses to hopefully decrease some nosebleeds she has been having.  As with any of her surgeries, we are nervous but amazed at how resilient her little body is.

I met with my surgeon this afternoon.  I am not sure that we got any questions answered other than I know what surgery I am having.  He has decided to take out the lymphnodes in my right side of my neck.  He is still very cautious about it.  He brought to my attention the risk involved with neck surgeries--yes, he is always concerned about the risks, However in my case he is even more cautious.  Because of my amputation and limitations, he in no way wants to limit me anymore.  Crazy that these worries never crossed my mind but I love it that it crossed his!!  Ideally, he would do a lymphnode resection (incision from ear to ear) and remove as many lymphnodes as he could.  However, he is very uncomfortable entering my left side for "exploratory" reasons.  If we need to in the future after a diagnosis, so be it, but for now it is off limits.  The risk involved is nerve damage that can paralyze my arms.  I will still have the procedure under general anesthesia but I will not be "paralyzed."  This way throughout the procedure he can tests my nerves to ensure they are working properly.  It will be a small incision in my neck and only a few days recovery.  

We talked extensively about my thyroid.  He saw it with his own eyes and got path reports and sees no reason to remove it.  The oncologist disagrees and feels as though the inflammation it causes scews my scans and until it is removed we can not rule out that inflammation. Right now, I am leaning towards conservative and so it will stay.  We also toyed with the notion of removing my spleen.  He also agreed that it is the only thing guaranteed to give an accurate biopsy.  However, it is an organ.  There is only 1 spleen.  It does have a role in my body.  So, we will do some heavy discussing and thinking before I have to make that decision.  

So surgery is lined up for January 22, again at UMC.  

Whew!  What a week and it's only Tuesday!  Tomorrow I am going to go with my uncle as he has a heart procedure done and Cohen gets to have her 4 year old check-up.  So if you are keeping up, 6 dr appts this week!!!  And just to throw in a curve ball, I had a root canal done yesterday afternoon :)

Snail Mail

I got a letter in the mail today from my surgeon--- yes, you read that right, a letter!!-- regarding scheduling my appointment.  This is a first for me.  I mean in this day of age, we have office phones, cell phones, email, and even a virtual chart but they are going to send me a letter with 2 appointment options and for me to call them with which ever one worked best for me.  Whatever.  Anyway, my appoint will be Tuesday, January 8.  I asked if it indicated what I will be having pre-op for and the nurse said all that was indicated was "discuss with patient next procedure."  Didn't clear anything up!  However, I am confident in Dr Ahmed and his skills so we will wait.

Next week will be a busy week.  I am having a root canal Monday on a tooth that started hurting before craziness started and after the surgery I couldn't keep my neck extended for that long so we are going to try and squeeze it in between surgeries.  Tuesday, meet the surgeon.  Wednesday my Uncle Mitchel will be having a catheter ablation of his heart early that morning and Cohen will be having her 4 year old check up.  Lots of doctors.....ugh!!

I put this on Facebook so some have already seen it, but isn't this hilarious!!  Left to right: My little brother, Bo, Kinson, me, Cohen, my older brother, Robert and my mom.  My brother bought this for my sweet sister-in-law for her Christmas present!  Let me just say---she is a better woman than me!!  I don't think I could have hidden my excitement, joy. jubilation, ummm I am not sure I can think of a nice word :)

Cohen has become quite the photog lately.  She grabs our phone and says, "Say cheese!  1, 2, 3,!"  You better look AND smile or she will say it over and over until you do.  I have about 250 pictures in my cloud that I need to erase!  Here is one that I kept!