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I am isolated to the house until December 28^th, our next clinic appointment. This drastically changes many holiday plans but will allow us to continue with our treatment plan. It’s amazing the number of friends and family we see only during this holiday season.  I am sneaking to Mom’s house for Christmas brunch hidden behind a mask. The only change would be if someone else was sick. It’s just not worth the risk.

The isolation is mandatory due to our change in management after my chemo treatment and the new diagnosis of Sweet Syndrome (SS). We fully expect my white blood cell count to drop to a dangerously low level.  They will infections this with proactive antibiotics to counter any potential infection and then carefully monitor for any signs of infection.  They are using steroids to combat many of the inflammatory sign we are seeing. It is all such a delicate balance.

Enjoy each other my dear friends and family this holiday season. For those I miss seeing please understand we have made these modification all in my best interest and yours. None of you would want to be the “one” that might have given me a deadly infection. I love you all!

I would like to share with you an amazing gift I received this week from my sister and a generous listener & her family from 94.9 KLTY radio station. KLTY is a DFW Christian radio station. I was dismissed from the hospital December 15th and today I received a phone call from my sister. She begged me not to be angry with her and that I needed to remember she loved me. Kim had a prayer request and she had been praying God would answer her prayer request for over 9 days. She learned today her request had been answered.

She promised me I would receive a phone call from her later today explaining the rest. She called back via a conference call. It was then I learned she had submitted my name to the KLTY Christmas Wish Campaign and her wish for me had been granted. The listener asked to remain anonymous and agreed I could use her first name. She and her family have had their lives impacted by breast cancer and they had lost a family member this past year. They knew only too real the impact breast cancer can have on a family.

The past 6 months
For us the financial cost of the disease has been tough for us but we have been fortunate to have had some plans in place. We had faced this hurdle only 18 months earlier. We were just getting our feet back on the ground. We often wonder what happens with other families that do not have a plan and/or lack insurance.

 - John has been able to continue to work full-time as a police officer having the support of my parents and friends getting me to appointments and trips to Houston.

- I have been able to use my annuity account with early withdrawals for medical reason. We will pay taxes and penalties but it has allowed us to keep our home and cars. It has helped us to meet all our co-pays and the many expenses we have endured when we travel to MD Anderson. We have had 3: 7-14 day hospitalizations including one extensive stay in the ICU.

- It is amazing the cumulative costs for medications, tests and hospitalizations. Our monthly medical copays have been $1,000 - 1,500. I  had been able to work up until this past month. The multiple hospitalizations and 6 months of chemotherapy have really adding up. I am now on short term leave with requires a month of lost wages prior to reimbursement kicking in.

Despite the past financial costs we have seen, the 6 months have been filled with amazing gifts and support from family, friends and strangers.

- Jennifer and I were gifted a graduation trip to Hawaii.

- David and I participated in 2007 Komen 3-Day Walk and were selected to be a part of their 2008 Ad Campaign.

- Our gift from a Julie & her family making the holiday Christmas season easier for John and I. While our medical bills have continue to mount; we promised Julie, per their request, we would use some of the money to purchase gifts that would make this a special holiday for our family.

Kim’s Amazing Nomination Letter to KLTY
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From: Coen, Kim
Sent: Monday, December 10, 2007 5:14 PM
To: ‘kltychristmaswishnomination@klty.com’
Subject: Nomination for Christmas Wish

I would like to nominate my sister, Stephanie Gaworski.  She is married with two children ages 17 & 15.  She is currently battling stage IV breast cancer that metastasis to her liver, spine and lymph nodes.  Right now she is unable to work so her family has lost her income as well as with co-pays and other medical expenses running between $1,000 to $1,500 per month.  Things have been really tight for them.  She has a blog about herself at www.knockknocktx.com, should you have a chance to read what an inspiration she is for everyone.  During all this time she has focused on the positive side of things and has tried to be an encourager for others.  At the time of this letter she is at Baylor All Saints Hospital with complications from her last chemo treatment.

I asked her what she and her husband are doing for the kids for Christmas and she said that she really did not know, but that her husband would not let them go without, they would find a way to give them something.

I would like to see them not having to worry, if just for a month, about her medical expense and for many people to pray for a miracle for her.  And that she can be home and surrounded by all of her family that loves her very dearly during this Christmas holiday.

Thank you and may God bless everyone this holiday season,

Kim Coen

What is the 94.9 KLTY Christmas Wish?
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During the holiday season, 94.9 KLTY helps out the DFW metroplex by initiating two promotions called The 94.9 KLTY Christmas Wish. Through the generous donations of the 94.9 KLTY listeners and their advertisers, 94.9 KLTY is able to donate over $660,000 back into the Dallas/Fort Worth Metroplex. To take part, listeners simply stop by DFW Chick-fil-A to make a contribution. 100% of all funds raised are given back to the DFW Community. These promotions help to make Christmas wishes come true.

- They ask our listeners to email them Christmas wishes or nominate a Christmas Wish Recipient. 94.9 KLTY then selects a letter a day starting November 26th through December 24th, and make their wish a reality!

- Notebooks are compiled of letters not selected and readers are given the opportunity read through the notebooks and make personal selections. This is how our letter was selected.

Kim’s Thank You Letter to Julie & her Family
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From: Coen, Kim
Sent: Friday, December 21, 2007 3:52 PM
To: Julie
Cc: Steph Gaworski home
Subject: RE: Christmas Wish

Julie,

Thank you so much for granting my wish for my sister.  You will never know just how much it meant for me and my family.  I know that God was and is in control of all things.  I will always thank Him for your generosity.

I also look forward to meeting you in January, and I hope that you and your family will have a very blessed Christmas. I have copied this e-mail to Stephanie, so you should be able to see her email address, if not it is stephaniegaworski@charter.net.

Sisters in Christ,

Kim Coen

Tomorrows to come
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Nearly everyone has been touched in some way by breast cancer. It is hard for us to imagine a world without breast cancer given how pervasive the disease has been in our life. Let yourself envision that world, it’s not a fantasy. It’s a reality within our grasp. I should have to look at the mirror in the morning and say: Will I survive? Everyone deserves a lifetime: No family should loose a mother prematurely, a dear friend, sister, wife, daughter, or co-worker.

I promise you this: it through God’s grace and his promise of salvation that I step foot out of bed each day. It is support from family, friends and strangers that continue to uplift us in prayer and provide daily comfort. To each and every one we wish you a very Merry Christmas.

Mom and I went to clinic and met with the oncology team. We had lab work drawn and all my blood counts were good. I don’t know what John and I would do without the support of my parents. They are available at a moments notice and it has allowed John to continue to work and miss fewer days. I wish we did not live so far away from John’s family. We would be able to see them more often.

The team has been researching best practice with Sweet Syndrome (SS). One of Dr. Young’s colleagues, Dr. Xiong came from MD Anderson and has seen more patients with SS. He said he has seen SS can come from Neupogen or from the actual tumor itself. We will hold the Neupogen secondary to SS. The Neupogen boosts my white count after chemo. We know Taxotere will drop my white blood cell accounts dangerously low without Neupogen and  I will be at high risk of getting an infection. We will take prophylactic antibiotics and they are place me on isolation precautions. We will continue with the Xeloda for the full 14 day course of therapy.

Many have asked want do you want or what can I get you for the holidays? My request is simple; I would ask for prayers for continued good health and that I will not get an infection.  - AMEN

Tomorrow I follow up with the team after getting out of the hospital. I’ll post an update when I have one.

As we prepare for the holiday season, I pray that we all find joy and love.

Stephanie

I have been awake nearly every hour. I am going home today and I’m excited. They are sending me home on two antibiotics and I am to follow up with Dr Young the first of the week. Chemo is due Friday and the question remains will be do we proceed or hold for Christmas. Thanks to all who have said prayers and sent messages of support. 

With this stay they discovered I have Sweet Syndrome. Rare, it can occur in patients that receive Neupogen. I take Neupogen to boost my white cell count on a weekly basis. It is treatable but it can also complicate the treatment plan for chemo. We will continue to fight.

Most importantly I am home and surrounded by an enormous circle of friends and family. We love you all.

Grace & Peace this holiday season.
Steph, John, Jennifer & David

The Infectious Disease doctor came by. He’s going to keep me in the hospital to finish up my IV antibiotics (Vancomycin) and finish the remaining course of pills at home. What does this all mean? I AM going home Saturday. We are all excited! We have cats and Zak thinks I’m his Mother. He cries daily looking for me. When I get home and he will ignore me for a day or two and then be attached to me.

The Oncology team is giving me my scheduled chemo (Avastin) today. They are also resuming Xeloda. I should have taken it for two weeks and I only took it for one week. I will go back to clinic next week and see what our plan is. The rash and sores are all diminishing so they are holding on steroids for now.

Sweet’s syndrome is a skin disorder characterized by fever and painful skin lesions. The condition starts suddenly with the appearance of red, slightly raised and tender bumps (plaques), usually on your back, arms, face or neck. These painful bumps rapidly increase in size, and they may progress to blisters. In most cases, the cause of Sweet’s syndrome is undetermined. However, Sweet’s syndrome may follow an upper respiratory infection in young adults. Rarely, Sweet’s syndrome may occur as a reaction to medication. In older adults, Sweet’s syndrome can be associated with certain types of cancer, such as leukemia. Sweet’s syndrome occurs most often in women 30 to 50 years of age. Treatment of Sweet’s syndrome, also known as acute febrile neutrophilic dermatosis, is with oral and/or topical medications.

Signs and symptoms
The distinctive skin lesions are the most obvious sign of Sweet’s syndrome. The lesions seem to appear suddenly as a series of small red bumps that quickly increase in size. The bumps, also called plaques, may grow to be 1 centimeter in diameter or larger. Plaques usually appear on your back, neck, arms and face. These tender and painful eruptions may develop blisters, pustules or ulcers, causing your skin to burn or itch. The skin lesions may persist for weeks to months and then disappear on their own, even without medication. With medical treatment, you’re likely to be free of skin lesions within just a few days.

Sweet’s syndrome may be your body’s reaction to an internal problem, so it’s possible for you to develop the skin lesions at the same time you’re experiencing problems with your bones, nervous system, kidneys, intestines, liver, heart, lungs, muscles or spleen. Some of the other specific signs and symptoms of Sweet’s syndrome may include:

• Moderate to high fever
• Pink eye (conjunctivitis) or sore eyes
• Tiredness
• Aching joints and headache
• Mouth ulcers

Causes
The cause of Sweet’s syndrome is usually impossible to determine (idiopathic). But in some cases, it may be your body’s immune system reacting to one of the following conditions or circumstances:

• An upper respiratory tract infection, such as a chest infection or strep throat
• Blood disorders, including leukemia in older adults (especially acute myelogenous leukemia, a cancer of the blood and bone marrow)
• Inflammatory bowel disease, such as ulcerative colitis or Crohn’s disease
• Bowel or breast cancer
• Pregnancy
• Rheumatoid arthritis
• An injury at the site where the rash appears, such as from an insect bite or needle prick
• Certain medications, such as nonsteroidal anti-inflammatory drugs (NSAIDs), Neupogen

Risk factors
Women are most at risk of Sweet’s syndrome, predominately women between the ages of 30 and 50 who have recently had an upper respiratory tract infection. The condition has also been reported in children as young as 3 months and in adults as old as 85. Pregnant women may get Sweet’s syndrome during their first or second trimester. In these cases, the condition usually goes away without medication.Sweet’s syndrome tends to recur. About one-third of people who have had Sweet’s syndrome get it again.

Screening and diagnosis
Your doctor can make a diagnosis of Sweet’s syndrome by:

• The distinctive rash. These red, tender and painful bumps rapidly increase in size and may progress to blisters.
• Blood tests. Your doctor may take a small sample of blood and have it analyzed to see if you have an unusually high number of white blood cells, which is characteristic of Sweet’s syndrome. Your body produces additional white blood cells to defend against inflammation or an infection.
• Tissue sample. Your doctor may remove a small piece of affected tissue (biopsy) for examination under a microscope. The tissue is analyzed to determine whether it has the characteristic abnormalities of Sweet’s syndrome.

Complications
Sweet’s syndrome may be a warning sign that your body has a more serious internal problem. For this reason seeking medical care is critical.

For example, Sweet’s syndrome sometimes develops as your body’s reaction very early in the course of cancer, possibly at a curable stage. Sweet’s syndrome may also develop at the same time as other internal problems in your bones, nervous system, kidneys, intestines, liver, heart, lungs, muscles or spleen. Some specific examples of these conditions may include:

• Inflammatory bowel disease
• Infections of the upper respiratory tract, including strep throat, pneumonia and tonsillitis
• Urinary tract infections
• Infections of the liver and gastrointestinal tract
• Certain systemic infections

Treatment
Left untreated, Sweet’s syndrome not associated with a malignancy may disappear on its own within one to three months. In contrast, the right treatment may improve the skin lesions and associated symptoms dramatically in just two or three days, with the worst of the lesions disappearing within one to four weeks. With or without treatment, the plaques and lesions rarely leave a mark or scar when they eventually disappear. Your doctor may advise continuing treatment because recurrence of the condition is common.

Medications
Doctors typically prescribe systemic corticosteroids (prednisone or prednisolone) to treat Sweet’s syndrome. These oral anti-inflammatory medications lessen redness, itching, swelling and allergic reactions. But there are potential side effects. Corticosteroids may lower your resistance to infections. Also, any infection you get while taking corticosteroids may be harder to treat. Corticosteroids may also cause blurred vision, frequent urination and increased thirst. Your doctor may also recommend topical corticosteroid treatments to provide direct relief of redness, swelling, itching and discomfort of skin  lesions. In addition, your doctor may suggest that you take nonsteroidal anti-inflammatory drugs (NSAIDs) such as aspirin, ibuprofen or naproxen sodium to reduce inflammation and relieve other signs and symptoms, such as fever and headache.

Reference: http://www.mayoclinic.com/print/sweets-syndrome/DS00752/DSECTION=all&METHOD=print

I received the results from my echocardiogram and they were not able to rule out vegetation on the valves. It did show moderate pulmonary hypertension & tricuspid regurgitation. The bad thing is I was alone & asleep when doctor came. They had medicated me for a bout of pain & nausea and I was not the sharpest rock. They will continue to consider a transesophageal echo pending the results of the white cell scan. Today I am having the last phase of the White Cell Scan completed. It is a special body scan that will look for pockets of the radioactive WBCs. I am now running low grade with nothing over 100. It’s about time! The team received the results from the WBC scan which did not indicate a massive infection anywhere.

I think they found it! Earlier in the week they took a skin biopsy from my rash. It came back indicating Sweets Syndrome (SS) which is a rare reactive systemic disease characterized by acute fever and painful skin lesions. It is not “just a rash on the skin” as it effects the entire body. The condition starts suddenly with the appearance of red, slightly raised and tender bumps, usually on your back, arms, face or neck. These painful bumps rapidly increase in size, and they may progress to blisters.

Sweet’s syndrome

1. May follow an upper respiratory infection in young adults
2. Can be associated with certain types of cancer, such as leukemia
3. May occur as a reaction to medication like Neupogen
4. Occurs most often in women 30 to 50 years of age.

Sweet’s syndrome treatment is oral and/or topical medications. Sweet Syndrome is traditionally treated with steroids (prednisone). There are also other drugs used for patients whom steroids are contraindicated.