Mama's Broken Heart - by Jenna

Thyroid -POST #2

Dave and I saw Dr. Tufano yesterday at John's Hopkins in Baltimore.  He said that with the testing I have had done, the chances of the nodule on the left lobe of my thyroid being cancerous is 50%.  The only way to know for certain is to have my entire thyroid removed and they will biopsy the tissue.  I will get results in less than a week.  He said his surgery schedule was booking into March and we were in no rush.  I mentioned to him that my endocrinologist was worried about my lymph nodes.  He said from what he has seen he isn't, but he will schedule me for a ultrasound at his facility to be certain.  I mentioned that we have a family vacation planned the first week of April.  He said to go ahead and take the vacation and have the surgery mid-April.  He said the surgery would be an overnight stay in the hospital and that I could not lift anything or drive for a week or so after the surgery.  I did have a endoscopy (gross tube down my nose) to have a peek at my vocal cords.  Dave thought it was the greatest thing ever.  I am still disgusted.  Yuck.

I will call Monday to set up an ultrasound appointment and surgery date. 
I have the best friends and family giving me support and worried for me.  THANK YOU! :)
OH!!! and I got home yesterday to find an email that I won a contest!  (see below)

Hi Rachel,


Congratulation, you are the winner of a Free Weighted Blanket!

I would first like to commend you, and your husband, on your remarkable strength. You have an incredibly touching story that has truly blessed our lives. Thank you for staying strong, and for loving your family the way you do. We have decided that we would like to donate a Weighted Blanket for each of your children. We believe there is not an individual that would not benefit from our Weighted Blankets.

Please visit www.SensoryGoods.com and choose the exact blankets you would like for your kids, and then email us the details of your selection. Along with the details of your selection, please send your mailing address and phone number. Please email all of those things to info@sensorygoods.com.

Thank you,

Owen Parker

Winter Storm JANUS

Our surprise snow storm is still bringing us snow here tonight.  Our unofficial count as of 3:00pm was 8".  The kids will have a five day break as school is canceled for tomorrow too!   The snow should stop tonight and bring in super cold temperatures for the remainder of the week.  YEAH WINTER!

Thyroid - POST #1

Swollen eye Rachel

Regular Rachel  :)

This post is the start of my (documented) journey of thyroid disease.  

Jenna was born in April of 2009.  By the fall of 2009 and to date I have dealt with swollen, itchy, irritated, infected eyes, skin, scalp and hair loss (to almost half of my hair gone now).  My eyes have been my primary complaint throughout all of this.  As you can see above, I am unable to prevent and/or cover the red, swollen, crustiness and itchiness that has consumed my eyes.  I am always being asked, what is wrong and have I been crying.  My eyes have become so sensitive - it's actually painful.  My greatest complaint is not with my appearance, but with the uncomfortable feelings that have taken over my eyes and my skin.  I am always itching,  so much so that I make myself bleed. I can now say at this time that consistent itchiness is even worse than pain itself. 

I have always been an itchy and allergic type person, so I didn't think much of all of this for quite awhile.  Throughout 2010 and into 2011,  I have had countless apointments with my primary doctor, allergists, opthamologists, dermatologists and now endocrinologists.  I have been given many doses of antibiotics, creams and oral steroids to treat my infected eyes.  I have been told that I have allergies.  I have changed my cosmetics which did not give me relief.  I have been told to change my bedding, and to wash my face once I come in from the pollen filled air in the spring and summer.   I have been to allergists who have tested me with patch testing to see if I was allergic to chemicals in everyday products.  Days of wearing allergy patches on my back, led to another no answer.  The summer of 2011 I went to my primary doctor with the same complaint - swollen infected eyes and this time a swollen lymph node behind my ear.  After feeling my neck, my primary doctor told me she suspected I had a problem with my thyroid and that I should get an ultrasound.  In September of 2011 I had an ultrasound which did show and suggest that I should have a biopsy of some suspicious nodules on my thyroid.   I was told that I should also see an endocrinologist.  I did see an endocrinologist in the fall of 2011.  As she reviewed my ultrasound scan she said no need for a biopsy I have what is called "Hashimoto Thyroiditis".  I remember most her asking me if I had pregnancy/fertility issues.  I sat right there in the chair and cried.  Here was the answer I was looking for for so many years.  Come to find out, like so many others I have an underactive thryoid (Hypothyroid).  My doctor told me she would put me on a thyroid medication which I would need to take the rest of my life to increase my thyroid productivity.  She said I would be feeling better in a matter of weeks.  I did NOT have the common signs of this disease, tiredness, brain fog, weight gain, swollen neck, hard to swallow, pain in my neck, none of this....just the symptons listed above - skin and hair loss issues. 

My skin and eye issues continued on with medication changes.  I had an ultrasound of my thyroid after asking for it after so many months. My doctor confirmed there was a questionable nodule, but for sure a definate diagnosis of Hashimoto (swollen, bumby thyroid, underactive thyroid).  In the spring of 2013 I started using a cream in hopes to help my face and eyes.  Well after a month of the worst reaction, I realized the cream was irritating me, but in the meantime had seen my endocrinologist who was worried for me not knowing why my face and eyes were so irritated.  She ordered a biopsy to be certain nothing was going on that we were missing.  In August of 2013 I had my first thyroid biopsy at my doctor's office.   After four needle sticks in my neck, the results came back "indeterminate".  There was also not enough material collected for the lab to complete the second test to determine a further diagnosis other than "indeterminate".  I was told to come back in a few months for a second biopsy, but not to worry this happens frequently.  In December of 2013 ( a few weeks ago) I had my second biopsy with five needle pricks to be certain enough fluid was collected.  I found out before Christmas that the first result came back "indeterminate" again.  I would have to wait another week or so for the second result.  The second result of "50-75% suspicious for cancer was given to me on New Year's Eve.  The doctor said she wanted to get me into the office right after the holiday to check my lymph nodes.  This brings my story up to date. 

I have been diagnosed with Stage 1 Thyroid Cancer and that I will need to have my entire thyroid removed.  I have an appointment with a neck surgeon at John's Hopkins Hospital on Thursday 1/23.  I hope to know more then.

Fresh Beat Band

A surprise for Jenna tonight - The Fresh Beat Band concert at the Baltimore Arena!!  Jenna's new favorite group/tv show is The Fresh Beat Band.  She had no idea she was headed to this concert.  She fell asleep in the car on the way there and woke up to us carrying her in the freezing cold Baltimore streets.  She picked up on our surprise right as we entered the show after seeing kids wearing their concert t-shirts.  Jenna danced and loved every minute of it.  During the show, she turned to me and said...."Mommy, They ARE real!"

Lazy day Sunday

 Drew was laughing quite a bit this morning!

 Ava & Amelia playing jacks. 

Jenna baking cookies.

Amelia's FAVORITE thing.. the Kindle and Survivalcraft.

Amelia's Chorus Concert

Ava and I watched Amelia and our local area schools sing in the Urbana Community Chorus Concert last night at Urbana High School.  See Amelia there between the two directors?

Our White House Tour

Well, today was our scheduled White House Tour at 9:30am.  The temperatures this morning at 8am on the way downtown were 10 degrees!  Unfortunately for me, cameras were not allowed inside.  Here was our view as we exited The White House.

 Our family photo taken by the mystery lone girl "who was just getting some air".

Ava wants to bring the photo to class to prove she did go to the White House.  Ava did tell us she prefered the tour of The Capitol.

Drew's wheelchair gave him and I a behind the scenes tour.  We (us and the secret service agent) took the service elevator down stairs into the main kitchen, near the bowling alley through the original charred archway front door entranceway, and lastly we rolled right across from the actual elevator the President takes.  Soon enough we returned to the regular ol' tour..... 

 It was so cold getting back to the car.  We ran two blocks.  We picked up some hot chocolate at Starbucks and then onto....

 Feeding many pushy seagulls (geese) cinnamon toast crunch at Gravelly Point.

We ran out into the cold to watch the planes land at National Airport right above our heads!

Then we returned home to find water leaking down our one wall in the basement.  Seems we have a leaky, burst bathroom pipe in our wall.  No water here now until Monday. 

More Snow....

More snow last night.... four or so more inches and Jenna gets to use her new snow shovel!! It's freezing out there.

NEW YEAR'S DAY

Hoping for a healthy, happy New Year.