Friday, July 31, 2009

It's been one week to the day since we sent the 'compassionate use' application to Bayer requesting a donation of nexavar after medicaid turned it down because of the expense.

Amiee will start her two - three chemo-pill a day regimine today. We are heading over to see her soon. Really bad week for us. I've been incredibly stressed and made things difficult for her dad. (PS: It's so important to have outlets as caregivers. You never know when or why some days are worse than others. Surround yourself with things that make you happy and are helpful to you!). Her birthday was Monday, she turned 23. We've been battling with the healthcare plan, Access Health Solutions, the medicaid reform company of our choice in Broward County, Florida. We can't select 'straight medicaid', we have to chose from a group of plans that is not functional to Amiee's condition at all. And they add and drop plans and coverage randomly, in the middle of treatment.

Here in our county, they do not have any surgical facilities that could support her. Our original plan covered the Moffitt Cancer Center in Tampa, where we have been seeking supplemental treatment, is no longer covered under this plan. Fortunately, her onc is young, aggressive and has reached out to his peers to find out the latest combo of chemo drugs that may work on her angiosarcoma. She's been on a breast cancer regimine on an experimental basis since October/November 2008. It worked great in reducing the tumor, but the side-effects landed her in ICU January and February of 2009. Her immune system is so compromised from the three years of chemo this go round, the two weeks of radiation, and the four years of both during her childhood battle with rhabdomyosarcoma.

The 'insurance' won't allow her to go out of county for treatment without prior authorization and acceptance of the receiving facility. In her condition, that won't happen. We've considered having her airlifted to University of Miami, Jackson hospital in Miami Dade, but our first year and a half we were there. We left after a 12 hour wait on the curb at the ER where her oncologist told us he'd meet us and left us waiting. The waiting for an 8:00 oncology appointment at that clinic was often until late afternoon. Even then, we'd get about 15 minutes with a public health oncologist balancing an incredible caseload, and they'd barely remember the case when we got there. Then, the doctors would change and we'd start all over again. The waiting would have absolutely killed her. They have more comprehenisve facilities in Dade county, but the trade off is too great. Choice would be nice. SUPPORT HEALTH CARE REFORM!!

To make things even more interesting, we started receiving calls from a hospice center here that received a 'referral' for her to be moved there. Nice call! They asked for me and said they had the 'information I requested'. I never requested anything like that, and it turns out the hospital 'case worker' and social worker, along with the medicaid case workers have been pushing for her to be moved for about a month. They have been up in her room, harassing her about hospice and she cannot even talk (because of the huge tumor in her mouth) to respond. What a nightmare for her! Her 'primary care' doctor, (the doctor on-call when we had her admitted in May), has been doom and gloom since the day we got there. Understandably. But of course, we don't want to here that! Her oncologist has been wonderful and honest and caring and told us when there's no more hope, he'll tell us. So he's fought with us to keep her in the hospital until the nexavar went through.

He has told us he does not expect this to work but wants to exhaust the last option he could reach for. It's a kidney cancer drug being used for a head and neck tumor. We'll take it gladly!!

Today's the day!!! It has to work. We'll continue to take things hour by hour, day by day. We're continuing to fight against all odds to save our beautiful girl!

Wednesday, July 29, 2009

As a part of our annual community outreach, we have announced "Just One Night", a partnership being developed between AP and South Florida area hoteliers.

Tuesday, July 28, 2009
Broward County, Florida

Amiee’s Place, a 501(c)(3) foundation, provides quality of life goods and services, education and advocacy for young adults 18-29, suffering from advanced stage cancer. We became aware of the severe lack of support services for the young adult community after a long battle with our 23 year old daughter, Amiee. She is a childhood cancer survivor of a four year battle with rhabdomyosarcoma, now in the end stages of head and neck angiosarcoma.

Headquartered in South Florida, the idea to acquire vacant hotel and rental home vouchers to support our members immediately seemed like a natural fit. With vacancy rates at an all-time high due to the declining economy, corporations can partner with Amiee’s Place to offer available rooms to young adults fighting for their lives.

Where your gift goes:

Give a young adult a night they won’t forget
• Just One Night they can escape the pain of treatment and uncertainty of their fight.
• Just One Night to get away with friends. YA cancer fighters are struck in the primes of their lives. Their friends are in college, starting new jobs and just beginning to experience life. For our members, time stands still. They face each day not knowing if they will live or die.
• Just One Night they can enjoy a beautiful environment with family creating joyous memories moms, dads and siblings will never forget.
• Just One Night to play in the Magic City. Many of our members spend months at a time hospitalized and alone while family and friends are at work and school. They suffer silently from the guilt of burdening their loved ones and are unable to care for themselves financially.
• Just One Night to take a break from their treatment center to experience the healing effects of our world class South Florida beaches.
Your donation of vacant hospitality rooms will make an impact that will last a life time for an Amiee’s Place member. For you, the satisfaction of helping someone in their battle for life will be supported by media publicity, acknowledgement as a Corporate Sponsor on all media materials, and exposure for your compassionate donations to the high-net-worth individuals of the regional foundation community.

CONTACT US TODAY TO PARTICIPATE

Good news from Bayer

Update on Amiee

Good news! Today we learned that Bayer approved NEXAVAR for compassionate use. Amiee should start her treatments in the next few days. She will be taking two - three pills each day. We have been told not to expect any results because her condition is so advanced, but we are holding out for miracles and this is it!

We'll keep you posted!

Amiee's Parents

Visit us on Facebook

Young Adult Cancer Bill of Rights


We are neither pediatrics nor geriatrics, we have unique needs- medically, socially, and economically.

However, the rights and dignity of adolescent and young adults are equal and vital to all individuals.

We deserve to have our beliefs, privacy, and personal values respected.

Access to care is a right, not a privilege.

Our rights, as we perceive them to be and intend to preserve them, are:

1. The right to be taken seriously when seeking medical attention to avoid late diagnosis or misdiagnosis, and entitlement to separate and confidential discussions regarding our own care.

2. The right to affordable health insurance, as well as early detection tests unhindered by insurance or socioeconomic status.

3. The right to be offered fertility preservation as well as current information and research regarding ongoing and potentially lifelong effects of cancer treatment that would affect our fertility.

4. The right to be informed about available clinical trials and given reasonable access to them.

5. The right to untethered access to adolescent and young adult cancer specialists and, when requested, a second opinion regardless of insurance or geographic location.

6. The right to access a social worker or caseworker who is well-versed in adolescent and young adult cancer specifics.

7. The right to “generationally applicable” psychosocial support.

8. The right to have our insurance and position as a student or employee protected by law while dealing with our cancer in order to minimize discrimination.

9. The right to clear explanations regarding the long-term side effects of our disease and its treatment, and to be offered all available and applicable physical reconstruction and rehabilitation options.

10. The right to have all of our treatment options explained to us in full detail, to have our questions answered, and to receive clarification when requested so that we can be an active part of our own care.

Preserve our potential.

SIGN THE BILL TODAY: http://seventyk.org/


Thanks to I2Y! for the great support and information. http://i2y.com/about/stats.shtml

"Big box cancer organizations do not currently fund

YA cancer research or support the most basic of

social services to the YA support community of

organizations like this one. If these statistics make

you want to puke and you truly want to start helping

this new generation of cancer survivors, give to the

groups without middlemen, where you know where

your dollar goes and there is measured impact.

Don't get lost in a sea of 10,000 people racing for

cures."




STATS & FACTS


(1) Cancer incidence in young adults (15-39) has doubled over

the past 30 years to nearly 70,000 diagnosis each year.º
http://i2y.com/images/spacer/10.gif
(2) Roughly 10,000 young adults (YA) die each year due to

cancer.º
http://i2y.com/images/spacer/10.gif
(3) The 5-year survival rates in YA has not improved over the

past 30 years¹ and currently hovers on average in the low-to-

mid 60% range. (As compared to high 80's in children and

older adults)
http://i2y.com/images/spacer/10.gif
(4) Why? Three reasons: delayed diagnosis, access to

clinical trials and age-appropriate peer support that

contributes to quality of life.º

(Note that none of these reasons have anything to do with

cancer research so helping YA doesn't necessarily mean

white labcoats.)
http://i2y.com/images/spacer/10.gif
(5) The #1 social issue faced by YA is isolation.
http://i2y.com/images/spacer/10.gif
(6) Psychosocial research (quality-of-life) is tantamount to

biological (clinical) research and the notion of survivorship

vs 'cure'.²
http://i2y.com/images/spacer/10.gif
(7) The entire medical community and cancer continuum

at large is grossly uneducated as to how to effectively

communicate with, diagnose, treat, support and follow-

up with YA.
http://i2y.com/images/spacer/10.gif
(8) Actual cancer 'research' in YA (all cancers) is different

than cancer research in children and older adults.

Donating your money to 'cancer research' today does not

mean it will help young adults unless it specifically says

so or if you specifically ask. Only a very small handful

of young adult cancer research projects currently exist.
http://i2y.com/images/spacer/20.gif
MORE STATS

(1) 1 in 50 Americans is between 18 and 40.²
(2) 1 in 50 Americans (18-40) is a cancer survivor. (est.)
(3) There are approximately 16 million Americans in college.²
(4) 1 in 100 college students is a cancer survivor. (est.)

Big box cancer organizations do not currently fund YA

cancer research or support the most basic of social

services to the YA support community of organizations

like this one. If these statistics make you want to puke

and you truly want to start helping this new generation

of cancer survivors, give to the groups without middlemen,

where you know where your dollar goes and there is

measured impact. Don't get lost in a sea of 10,000 people

racing for cures.

º source: NCI SEER Data, 2005
¹ source: NCI 'Closing The Gap', 2006
² source: IOM 'Cancer Care For The Whole Patient', 2007
³ source: US Census, 2007


Yesterday, we followed up on our application that was sent to Bayer on Friday, July 24th. We were told it should take only a couple of days and that things looked good. Every day is another waiting game.


This would be Amiee's 'on week' for chemo but the taxotere and gemzar she's been on for the past two months has stopped working. Like all the others. We saw some initial results after a couple of treatments. The tumor was breaking up. Unlike most cancers, hers is in her mouth so we can watch it grow and shrink....and grow. No testing required. No surprises. After the first couple of treatments it was growing again. Our hopes are with Nexavar now, which is primarily used for kidney cancer but we are told it has some affect on sarcomas. From what we've been told, her tumor is too large to see a positive response from the drug, but we are out of options.

We'll keep you updated as we receive new information. If you have any information to share regarding nexavar, soft tissue sarcomas, or the "compassionate use" of drugs by pharmaceutical companies, we'd love to hear about it.

Best wishes and smiles

NEXAVAR INFORMATION

Because sacomas generally have a poor prognosis, Nexavar can sometimes be requested for use in sarcoma.

Sarcomas can be divided into roughly two groups: chemo responsive varieties, such as Kaposi, soft tissue sarcoma, Ewings etc; poorly responsive varieties, such as chodrosarcoma and others.

Two Sorafenib (Nexavar) Clinical Trials are Currently Recruiting Sarcoma Patients in Different Locations Across the USA.

1. Phase II Study of Sorafenib in Patients With Advanced Soft Tissue Sarcomas

2. Sorafenib in Treating Patients With Soft Tissue Sarcomas

There is also a Kaposi's phase I trial and trials for GIST and other sarcoma types. Nexavar is an investigational treatment currently for sarcoma.

http://www.cancer.gov/clinicaltrials/NCI-06-C-0083

B . Kasper , T . Gil , V . D’Hondt , M . Gebhart , A . Awada Novel treatment strategies for soft tissue sarcoma Critical Reviews in Oncology/Hematology , Volume 62 , Issue 1 , Pages 9 - 15, 2007

Tuesday, July 28, 2009

The following informational article can be found in the Wall Street Journal, written by Dawn Fallik, who can be contacted at Dawn.Fallik@wsj.com.


Jamie Deibel was 12 years old when she was diagnosed with leukemia. During her two years of treatment, she took seven pills a day, except on Thursdays. That was her 21-pill night, each swallowed while watching the television show “Survivor.”

Five years after being cured of cancer, the junior nursing major at Eastern Kentucky University, is undergoing a new round of tests—this time for heart disease. The worry is that the chemotherapy that fended off her leukemia may have taken a hidden toll on her heart.

Ms. Deibel is one of an growing number of pediatric-cancer survivors who won their battles thanks to treatment advances. Now, some of these survivors are finding that the same treatments that saved their lives could come back to haunt them in new ways in their 20s and 30s. Because the onset of heart problems can come a decade or more after the last round of chemotherapy, patients and doctors alike are often caught by surprise.

“Many [cancer] survivors don’t have a clue” about the long-term effects of cancer treatments, says Paul Nathan, an oncologist at the Hospital for Sick Children in Toronto. “Many of them were treated as young children and have no recollection of what drugs they had or what they should be watching for.”

The biggest risk is believed to come from a class of drugs called anthracyclines, one of oncology’s workhorse chemotherapies that is effective against leukemia and a wide range of other cancers. The drugs’ toxic effect on the heart is well-established in adults. That they have similar effects in children is now becoming increasingly understood as these patients reach adulthood. Radiation treatments also come with risk of long-term side effects, especially when given in combination with anthracyclines.

According to the National Cancer Institute, some 10,400 U.S. children under the age of 15 are diagnosed with cancer each year. About 80% of them survive beyond five years and are considered cured. Twenty years ago, by contrast, about 58% of children survived cancer.

Researchers estimate that 10% of patients treated with anthracyclines eventually develop cardiomyopathy, a progressive weakening of the heart muscle that can lead to congestive heart failure. Most of these patients exhibit treatable symptoms, including exhaustion and shortness of breath. But in rare cases, the first manifestation of cardiomyopathy is an arrhythmia causing sudden death.

Among female survivors, cardiac dysfunction can first become apparent during pregnancy. Medical experts say women who received radiation or anthracyclines should be evaluated by a cardiologist before or during early pregnancy.

Doctors say anyone treated with an anthracycline as a child should get regular diagnostic tests for heart problems every one to five years, depending on the dose they received. But many patients don’t recall what drugs they were on, never mind how much they got or for how long.

Even though she received treatment only five years ago, Ms. Deibel says she couldn’t list her medications off the top of her head. During a recent checkup, however, her oncologist recommended that she go for an echocardiogram—an ultrasound of the heart—because one of the drugs she had taken was the anthracycline doxorubicin.

“When the [cancer] diagnosis happens, they’re talking to you about so many things, it’s a blur,” says her mother, Taylor Deibel. “I don’t remember a conversation where we sat down and said, ‘This is what could happen down the road.’ You’re just trying to get through the day.”

Joseph Carver, a cardiologist who is also chief of staff at the Abramson Cancer Center of the University of Pennsylvania in Philadelphia, says he’s seen a significant increase in the past five years in the number of pediatric cancer survivors who are turning up with heart disease in early adulthood. He attributes that to improved childhood cancer survival rates. Often, signs of trouble are subtle.

“Maybe they used to be able to jog four miles. But now they can only do two and they chalk it up to getting older or they’re just tired,” Dr. Carver says.

Ashley King, 28, was 8 when she was diagnosed with Wilms’ tumor, a kidney cancer. It spread to her spine and lungs. But after three years of radiation and chemotherapy treatments that included the anthracyline idarubicin, she was “clean.”

Then, three years after finishing treatment, Ms. King was diagnosed with cardiomyopathy. Initially doctors thought her condition was serious enough that she would need a heart transplant. But now she’s on two heart medications and says she feels fine, other than tiring more easily than she used to. “I go see Dr. Carver every year and I get an EKG and an echocardiogram,” says Ms. King, who owns a clothing store in Lewes, Del.

Patients with cardiomyopathy are treated with beta blockers and ACE-inhibitors. But there are only general guidelines for treating childhood cancer survivors who have developed heart problems. Dr. Carver says more research is needed to determine everything from an optimal schedule of preventive checkups to whether giving medicine before symptoms arise would prevent or delay harm to the heart.

Another issue is that when patients become adults they begin seeing new doctors who aren’t familiar with the problems they face. “With a 90-percent cure rate, now you’re having a lot of survivors hitting primary-care offices and family practices that may not have a great awareness of the issues that come with long-term pediatric-cancer survivors,” Dr. Carver says.

CureSearch National Childhood Cancer Foundation (CureSearch.org), a private fund-raising and patient support group, recommends that anyone treated with anthracyclines get a heart checkup every year and an initial electrocardiogram two years after completion of therapy. Among other known risks, pediatric-cancer survivors have a greater-than-average chance of developing skin and other cancers.

When Ms. Deibel, the Kentucky college student, passed the five-year mark as a cancer survivor in January, she celebrated with friends at school. “We had a piñata shaped like a star,” she says. “We put the word ‘cancer’ in the middle and I smacked it.”

Now, as she prepares to undergo the echocardiogram and various post-cancer tests, she and her family aim to strike a balance between vigilance and victory over her illness.

“You have to approach it as it comes along,” her mother says. “Because you can freak yourself out, and I don’t want to live with that constant fear.”

Write to Dawn Fallik at Dawn.Fallik@wsj.com

In reply to a blog posting from a cancer fighter concerned with burdening their caregiver (mom). They have always had a very close relationship and lately it has been strained because of the battle with ph-positive ALL and a recent relapse.


Being given a life altering challenge like cancer to deal with, there are plenty of opportunities to feel guilty, angry, and afraid. Whether you are the fighter or the supporter, these feelings will be there. The trick is to recognize the, accept them as a part of life, and let them go as quickly as you can. Negative emotions lead to stress and create a dangerous pattern that continues to fuel itself. The National Institute of Health (http://www.nih.gov/news/pr/sep2002/nichd-09.htm) released the following paper:

Stress System Malfunction Could Lead to Serious, Life Threatening Disease

"Whether from a charging lion, or a pending deadline, the body’s response to stress can be both helpful and harmful. The stress response gives us the strength and speed to ward off or flee from an impending threat. But when it persists, stress can put us at risk for obesity, heart disease, cancer, and a variety of other illnesses."
The key, even when healthy, is to find proper balance and to discover what works for you, in a healthy way. Below find a response to "Feeling Guilty's" post for help and support. There are some simple, good suggestions for dealing with guilt during treatments and how to approach building your support system. If you need are unable to find cancer support communities in your area, email Support@AmieesPlace.com. You are not alone!

To view the complete "Feeling Guilty" post, visit: http://cancerforums.net/viewtopic.php?p=55071#55071

If I were your mom, and I say this knowing I cannot truly imagine what she or you are experiencing, I would want to know how you are feeling. If it's too hard to talk in person, perhaps a letter or email. Whatever makes it easier for you. Share your concerns and maybe together you can find a local support group in your community for you both to attend. It's difficult at first but it is amazing how many lives are touched by cancer. Reach out and try to make a friend or two that you can lean on, and vice versa. Helping others through bad days will give you strength to get through your own, and make you feel less guilty about reaching out and burdening anyone further. Also, it will give your mom a little room knowing someone else is there for you when she needs a day to herself or to lean on a friend. It may be uncomfortable or even hard to do at first, but making a new friend is exciting for anyone. A friend that understands your situation that you can also relate to is a true gift!







Monday, July 27, 2009

Medicaide turned down the doctor's request for Nexavar (http://www.nexavar-us.com/scripts/pages/en/home/index.php)for Amiee. Too expensive. That's a blog post for another day. Anyway, last Friday we went to the hospital to filll out the paperwork to request Naxavar from Bayer for "compassionate use".


Her oncologist at North Broward Cancer Center has been amazing. We have been incredibly fortunate to have an aggressive, young doctor with no ego and tremendous passion. He has treated Amiee as he would his own daughter and that continues to give us comfort through all of this. He mentioned the 'chemo pill' a week or so ago, then seemed to try to brush it off. Her tumor is enormous and the pill is used for liver cancer, but aparently is showing some success in shrinking sarcomas, so we are holding our breaths. First, to be granted compassionate use to get the pills due to their outrageous expense, and next, that they work.

These are the issues being addressed by President Obama today:

  • Young adults 18 - 28 are the most under-insured population in the US today
  • Uninsurable due to "preexisting condition"
  • Exhorbatant pharmacutical costs to the consumer
BE SURE TO VOICE YOUR OPINION ON HEALTH CARE REFORM! BE INFORMED! FIGHT FOR CHANGE!

US HEALTH CARE STATISTICS:

• The United States is the only industrialized country in the world without a universal
health insurance system.
• In 2006, the U.S. census reported that 46 million Americans (recently revised downward
to 45 million) have no health insurance.
• “Over a third (36%) of families living below the poverty line are uninsured. Hispanic
Americans (34%) are more than twice as likely to be uninsured as white Americans,
(13%) while 21% of black Americans have no health insurance.”
• More than 9 million children lack health insurance in America.
• Eighteen thousand people die each year because they are uninsured.
• According to the UN Human Development Report, “The uninsured are less likely to have
regular outpatient care, so they are more likely to be hospitalized for avoidable health
problems. Once in hospital, they receive fewer services and are more likely to die in the
hospital than are insured patients. They also receive less preventive care. Over 40% of
the uninsured do not have a regular place to go when they are sick and over a third of the
uninsured say that they or someone in their family went without needed care, including
recommended treatments or prescription drugs in the last year, because of cost.”
• Half of all bankruptcies are caused by medical bills. Three-quarters of those filings are
people with health insurance.
• U.S. health care spending is approximately $2 trillion per year, or $6,697 per person.
The United States continues to spend significantly more on health care than other
countries in the world.
• Administrative costs account for 31 percent of all health care expenditures in the United
States. The average overhead for U.S. private health insurers is 11.7 percent; for
Medicare, it is 3.6 percent; for Canada’s national health insurance program, it is 1.3
percent.
• According to the UN Human Development Report, while the United States leads the
world in spending on health care, “countries spending substantially less than the US have
2
healthier populations.… The infant mortality rate for the U.S. is now higher than for
many other industrial countries.”
• A baby born in El Salvador has a better chance of surviving than a baby in Detroit.
The infant mortality rate in Detroit is 15.5, compared to El Salvador's rate of 9.7.
• Canadians live three years longer on average than we do.
• A study in the Journal of the American Medical Association found that older
Americans are significantly less healthy than their British counterparts - we have
more diabetes, heart attacks, strokes, lung disease and cancer. Even the poorest Brits
can expect to live longer than the richest Americans.
• Cubans have a lower infant mortality rate than the United States and according to the
U.N. Human Development Report, a longer average lifespan.
• Over the next decade, the federal government will give the drug and health care
industries an estimated $822 billion as a result of the 2003 enactment of Medicare Part D
(the Medicare prescription drug plan).
• There are four times as many health care lobbyists in Washington as there are members
of Congress.
• Ninety percent of Americans believe the American health care system needs fundamental
changes or needs to be completely rebuilt. Two-thirds of Americans believe the federal
government should guarantee universal health care for all citizens.

Happy Birthday Amiee!

Today is Amiee's 23rd birthday. It's hard not to look back at the past two birthdays when reflecting on where she is today. She had the trach in the year before last for almost a year and a half. She hates walking around with it and who can blame her. She's so young and beautiful...this is the time in her life she should be hanging out at Bayside in Miami or South Beach with all her older brothers and sisters and cousins, not lying in the hospital for the start of the third month straight this time around. Last year she had the trach out for her birthday. That's really what she wanted most. Last year about this time we finally made that family trip to Orlando we had been planning and it gives us so many precious memories now. Priceless!! It was difficult for her to ride the rides because of the opening in her esophagus where the trach was, and on the water rides she loves so much, we had to bundle her up to keep her neck protected. We had a blast!!!

She had a big smile on her face all day today. It seems like it has been forever since we've seen a real smile. She wanted everyone there with her to play games. The nurses, who are her second family now, came in and sang happy birthday too, and brought her a cake. She really was a princess today! We hung out and played connect four and mancala and she won most of them. We didn't let her win either. We're way too competitive for that, under any circumstances, LOL!

Some days providing care and making life altering decisions can be overwhelming. We met with another couple last Friday who will be doing informational videos for Amiee's Place, and who also will donate a video memorial for young adults with life threatening illness. For more information, please email Video@AmieesPlace.com. He lost his son Set to osteosarcoma and complications when he was only 24. Because of this, we were able to talk about how the experience of caring for a dying child affects you. Only someone with this experience could ever understand. Overwhelming does not begin to describe the day to day emotions that caregivers can experience. Very often, they experience isolation from friends and family, strain on their relationships and the care they take of themselves.

It's very important to take whatever time you can out for yourselves. In my personal experience, a high school friend of my mom, also a Columbia Psychology Professor and recent PhD had a severe stroke last year after caring for one of her twin sons who has been battling cancer. She has to learn to read and write again still today. Others suffer from alcohol and drug abuse, over or under eating, fatigue, weight loss or gain, or depression. Be aware of these signs and know where to turn for help, if you need it.

SYMPTOMS OF CAREGIVER FATIGUE THAT MAY INDICATE THE NEED FOR OUTSIDE SUPPORT

  • Feeling isolated or isolating yourself from friends and family
  • Strained relationships
  • Lack of a close support system.
  • Financial hardship
  • Insomnia
  • Depression
  • Drug / alcohol abuse
  • Over / under eating
  • Notable weight loss / gain
  • Extreme feelings of hopelessness

Experiencing a broad range of emotions from time to time can be expected. In far more extreme ways, there are good days and bad days. As someone recently shared with us, things will get better and be different than you can imagine as you go through an experience such as these. Taking care of yourself in body, mind and spirit should be made a priority.

  • Eat meals as regularly as possible
  • Focus on a healthy, balanced diet to sustain energy and support your immune system
  • Rest when you need to
  • Take naps
  • Use relaxation and meditation breathing techniques (sit or lie down, close your eyes, breathe in and visualize all good things entering your body from your scalp down through your lungs and limbs and toes; then breathe out and say to yourself 'all bad things out' and let them go with your breath. Allow yourself to let go and be cleansed. Keep breathing and repeating.)
  • Take walks outside
  • Join an online support community
  • Read for fun
  • Put exercise on your calendar a few times a week
  • Accept help from friends and family
  • Seek help through local support networks (If you need assistance with a referral to a local support service email Support@AmieesPlace.com.

To read more about how Cancer hurts Caregivers Too, visit the USA Today article of the same name:http://www.usatoday.com/news/health/2006-11-19-cancer-caregivers_x.htm

Wishing you all well!

PLEASE SHARE YOUR CAREGIVING EXPERIENCES WITH US. NETWORK WITH OTHER CAREGIVERS HERE.

Tuesday, July 21, 2009

Brighter in the mornings

It's great to sleep! Providing physical, emotional, medical and logistical support for a loved one, especially a child, with a terminal illness is indescribable. You feel their pain, yours and overwhelming helplessness. A good night's sleep, when we can squeeze one in, gives us the energy to at least open mail or return phone calls. Some days we are sitting here and the lights go out because we just forgot to pay the bills. For me being a 'Type A' senior manager for large financial firms, raising our kids, and otherwise knowing that whatever I focus on will be a success, having no power to change this and letting go of everything else has been a valuable life lesson. We only think the laundry needs to get done, or the earth will stop spinning if those phone calls are not returned. Our values and focus in life will never be the same, as caregivers and fighters can understand.

I've been a practicing Zen Buddhist for about 15 years now and I would recommend readings in this aera to anyone suffering with too many questions and not enough answers. Not trying to convert, and that's the beauty of Zen! It provides a foundation in meditation, and a structure for seeking understanding, which brings a peaceful quiet to the questions that have no answers. Buddhism is not a religion but a philosophy, or a way of living that connects us to being human, and to ourselves. Not in a good way or bad way, just opens the channels that are there. A good reading list can be found at: http://www.zenguide.com/zenmedia/zen_buddhism_recommended_readings.cfm. If you get the chance, you'll find most readings to be light and written with a great sense of humor. You can get as much or as little from them, but most often you will find just what you need in that moment.

We are trying to play catch up with our lives outside of the hospital this morning while waiting to hear from Amiee's Onc. She had a rough night. The IV line in her arm fell out and her veins are like stone because of the years of chemo and radiation. Sometimes it takes days to find a good vein that will hold up. She has a port but the IV is for her pain drip, which is now in her hand and causing her more discomfort. We'll be there with her in an hour. Being away from her is so, so hard!

Things are really looking up with Amiee's Place. We have a great group of volunteers working with us. One group coming together in South Florida and a partner group in Northern California, where we lived for some time. This has been such a tremendous gift! We hope to involve many volunteers in the 18 - 28 year old range, because we belive they will understand and be moved by our mission. The foundation is focused on organizing a Benefit Concert in Coral Springs, Florida to support the formal launch of our foundation. So far it's coming along nicely! We expect to have local talent, vendors, a raffle and food sales. It should be an exciting, fun, and hopefully profitable event. We have are also talking with the Surfriders Foundation South Florida and hope to partner with them on future fundraising efforts. Check them out at http://www.surfrider.org/southflorida/.

Only time will tell what lies ahead for Amiee. While we wait, we are loving her and making sure she has the little things she needs each day to feel connected and to hold on to hope. Reaching out to others and being able to give back to the caregivers and members who are fighting the daily battles is what gives us the strength to get up and fight another day. Our lives have been changed forever, and changed for the better. The compassion to end suffering for all beings is a fundamental principle of Zen and how fortunate are we that life has allowed us the opportunity to not only 'practice' Buddhism and compassion, but to actually 'live' it.

Monday, July 20, 2009

Silence

We're here with Amiee again. She can't speak, the tumor looks even larger. She writes on the whiteboard we brought her. Her left eye is beginning to close from the growth. Unlike most tumors, this one is visible because it's filling her mouth. She has an infection somewhere now and can't get any more treatment until it clears. Her doctor has one more trick up his sleeve, nexavar, which he'll add to the current treatment of gemzar and taxotere. She's had several others. The taxol was working, and this regimine worked for a couple of weeks but the tumor's getting bigger. We'll wait a day or two and call her Onc. If only she could talk, and eat. Her birthday's a week from today. She'll be 23.

Saturday, July 18, 2009

Time Stands Still

We don't expect to get any more really good news about Amiee's condition at this point, but we're not giving up! Years of research and appointments and trips out of town for seconda nd third and fourth opinions have all come down to these eternal, void hours of sitting by her side.

We use every ounce of zazen practice to keep our minds clear nad open when we are with her, then we drag oursleves home to sleep. Some days we end up sitting in the driveway or hospital parking lot for who knows how long. Just no strength to make it into the house and no reason to go in because the pain will follow.

Today her pain is a 7 out of 10. She has to use hand signals or try to write on an eraser board we got her because she can't speak. Her left lung is shrinking becasue she's been bedridden in the hospital for the past two months and lying on her left side. It's the side with the grapefruit-sized tumor in her angelic mouth and throat. Two rounds of chemo this week and it's growing again. Her blood pressure is 79/35 right now. You read that right. Honestly, we didn't know someone could live and be alert with pressure that low. They cannot increase the Dilaudid pain drip because her pressure is so low they fear she'll crash. The nurse walked out of the room shaking her head saying how 'sad, sad, sad' our situation is. We know.

We'll be leaving her soon to go back home. Time just stops and every reality and memory continually flood in carrying us along. Until something changes we're going to be right here beside her fighting, loving and waiting and letting her know everything is Ok. We are intimately connected to the human experience and for that we give thanks to the divine.

Practice a random act of kindness today and enjoy the peace that comes from loving.

Friday, July 17, 2009

Fort Lauderdale, FL July 17, 2009

Providing quality of life goods and services for young adults, 18 – 28, suffering from advanced-stage cancer and related complications, Amiee's Place was founded in early 2009 by parents of a young adult patient fighting a very rare and aggressive malignant head and neck cancer, angiosarcoma. Today the 501(c)(3) Foundation announced today its goal to raise $1 million dollars in their daughter Amiee's name, to seed their South Florida based program which will serve patients in the Dade, Broward and Palm Beaches. The fundraising will kick off on July 27, in honor of her 23rd birthday, and will conclude July 27th, 2010.

Information about Amiee's fight and the foundation in her name can be found at http://www.amieesplace.com/. This new site contains several features, including a Cancer Support page with links to worldwide organizations providing the latest research and educational information for young adult cancer fighters. A blog is also available where visitors can get updates on Amiee's condition and to share inspirational commemorative stories about their experiences with young adult cancer. This compassionate community is supported by clinical and medical health professionals, members and their loved ones.

The Foundation's program is designed to provide comfort care and quality of life goods and services to an underserved population of Gen-Yers. According to the American Cancer Society "Young adults diagnosed with cancer face unique challenges that can make them feel alone…such as fertility, body image, education, they are still aspiring to actualize their goals and dreams and are more susceptible to insurance and employment issues".. If you know of someone who would benefit from membership at Amiee's Place, an application is available through the website on the Contact Us page. Some of the services provided include paying for on-line courses, delivering cases of Vitamin Water or special dietary items not covered by insurance, providing laptops with wireless access, manicure/pedicures, and more.

If you are interested donating to Amiee's Place or becoming a corporate sponsor, please contact Info@AmieesPlace.com. Social workers and medical care providers wishing to be a referral source can contact us directly at:


Contact Information

Amiee's Place Foundation
Cindi Dixon, Co-Executive Director

954-675-2319
Info@AmieesPlace.com
www.AmieesPlace.com
http://amieesplace.blogspot.com/



In honor of our daughter Amiee's 23rd birthday July 27th, Amiee's Place Foundation announces our goal to help 100 young adult cancer fighters and their caregivers by July 27, 2010. Check back soon for the press release and visit our website at www.AmieesPlace.com to see how you can give.

Thursday, July 16, 2009

Another day

Today is the first day Amiee told us (via text) she feels TERRIBLE. One thing we continually give thanks for is her strength and silence. She has never complained. It's been amazing how she looks to us and trusts us and believes us.

How do we face her now? People we trust keep telling us all we can do is love her. Her dad is determined to keep her world as normal as possible. Her oncologist talked to her yesterday and told her if anything more dramatic happens that she should let go. She hadn't been the same since but she can't speak. She was up all night vomiting and sleeping when we got there today so we sat with her for awhile.

We left and went to the beach that we love and have spent countless joyful days at. It was painful. Just sitting up is too exhausting. We spend alot of time alone in our room. I am so puzzled some days when our pain seems too much to bear that she has suffered unimaginable pain. Even her doctors have been baffled about her illness.

All we can do is try to gain our strength from her and wake up to fight another day.