Friday, March 18, 2016

A note of Thanks & INSPIRATION!

Thank you and all the great folks at Love is Louder than Cancer!!  What a blessing this organization is to our family. 

Joseph was diagnosed with a very rare bone lymphoma on August 8th 2014 at the age of 15. Treatment commenced immediately and continues until December 8th 2016 (over 2 years of treatment and daily chemo). 

Joseph's spirit and resolve has not faultered during these days of chemo, spinal taps, nausea, blood transfusions and hospital stays.  Over the last year Joseph has battled severe pancreatitis (and pancreas shut down), temporary diabetes, shingles and chicken pox and now, severe bone necrosis from the steroids. Again his strong spirit has carried us. 

He is supported by his 18 year old sister Anna and 13 year old brother Michael.

Joseph hopes to get back on the golf course and back on track at the high school where he is a junior. He enjoys sports and hopes to become a sports agent or announcer one day for ESPN. 

Again we truly appreciate the gifts from heaven your organization is providing. 

Love to you all,

THANK YOU SO VERY MUCH for this note of  thanks, Shawna!  Prayers continue that Joseph will not allow this awful disease to break that of his strong spirit and aspirations!  Wishing your family blessings upon blessings...   

Friday, January 8, 2016

LILTC Community, Meet Vickie

My story actually starts back in 2001 when I was diagnosed with a spinal cord disorder.  Since 2001, I have had 7 spinal surgeries, more CT scans, myelograms, and tests you can imagine.  I was “unofficially” diagnosed with Spinal Multiple Sclerosis after a CT scan in 2006 showed several lesions on my cervical spinal cord.  In 2010, I underwent 2 surgeries – one was to remove my gallbladder that failed and was becoming gangrene; the second was to place a SCS (spinal cord stimulator) to help with the pain in my lumbar spine.  With the SCS placement, I am not allowed to have MRIs; otherwise, due to the magnetic nature of the SCS, I can explode in the MRI process.
Fast forward to October 2014 when I was diagnosed with 2 types of breast cancer.  My official diagnosis is IDC Stage IIA, Grade 3+, ER+/PR+, HER2,- BRCA1-/BRCA2,- Ki-67 (95%), Oncotype 18, 0/5 LN and DCIS aggressive Grade 3+.  On November 14, I had surgery with 5 lymph nodes biopsied.  On January 2015, I started 30 rounds, 6 weeks of radiation.  During week 4, I began to have complications with my rib cage and left lung.  Since then, I have had pneumonia which later resulted in the need for a lung biopsy.  The biopsy determined I had a pneumonia and radiation related condition known as BOOP (bronchiolitis obliterans organizing pneumonia).  I will always be prone to lung disease, pneumonia, pleurisy, broken ribs, heart problems, and LOTS of pain and fatigue due to the treatment.  I currently continue my active treatment with oral chemo-preventative medications.  I am scheduled to remain on the medication for at least ten years, maybe the rest of my life.
I am employed full time; however, I take time off when I am in too much pain or too tired.  I rarely take time off because 1) I don’t like missing work and staying home; and 2) I cannot afford to stay home. I am out of paid time off and sick leave which means when I need to take time off, I am unpaid.  If I am unpaid, I have to pay a portion of my medical benefits premium back to my agency.   It is difficult enough to have a life-threatening illness, but to have to pay your employer back for the health insurance provided by your employer, just causes so much stress and anxiety.  I also was told to reduce my stress by removing myself from a graduate program I was ¾ of the way through.  I may never finish it, it was a goal of mine years ago, but my health needs to be my priority.
My insurance was covering a good portion of my cancer care, but things have changed since insurance changed in July.  Many tests that my cancer clinic recommends are not covered by insurance, even with the cancer diagnosis.  I must come up with the extra to have the much needed tests that are recommended by my cancer clinic for the on-going care.  I also continue medical care with gastroenterology oncology, pulmonology, medical (hematology) oncology, integrated oncology which includes dietician, counseling, and medication management.  I have had to give up acupuncture to treat the pain, neuropathy and other cancer symptoms because of the cost.
My cancer team and neurology/neurosurgeon team advises MRIs be completed in order to monitor not only the cancer, but the spinal cord lesions/MS.  One thing, I currently have several CT scans a year, these come with a high risk of radiation exposure which is not recommended in place of a MRI.  In order to have MRIs, the neurosurgeon must surgically remove the SCS, a major surgery with a six week recovery.  Once that has been removed, my cancer and spinal condition can be monitored more closely and safely.
I am a single parent trying to make ends meet, but having difficulty meeting medical expense obligations.  My medical bills are piling up and I am worried about eventually being declined medical care if I have too many outstanding medical balances.  I cannot have contusing care to monitor the cancer for recurrence or the spinal cord lesions if I do not have the surgery to remove the SCS.  I, then, cannot have the MRIs that are recommended by all medical teams involved in my care and treatment.  Thank you for taking the time to read this and helping any way possible.
Invasive Ductal Carcinoma (IDC) and Ductal Carcinoma in situ (DCIS), Stage IIA, Grade 3+, ER+, PR+, HER2-, 0/5 nodes, BRCA1-/BRCA2-.

Vickie, our prayers will continue throughout the coming months, that our Lord will present a way for you to meet the costs of the tests necessary for your on-going care and monitoring. May 2016 bring you MANY, MANY unexpected blessings.