Friday, December 31, 2010
In hospice, most of my patients were over 70 yo, with a few being in the 40-69 range. I rarely had a pediatric patient. In pediatrics, all my patients are about 20 yo and younger.
In hospice, I saw a variety of diagnoses. In pediatrics, my specialities are brain tumors, sickle cell, and benign hematology. Whereas in hospice, I knew a little about a lot, in peds, I know a lot about a little.
In hospice, my desk was my dining room table and whatever I could fit in the trunk of my car. In pediatrics, I share an office with a view. I have my own desk. I have two drawers of a large filing cabinet. Space, space, space!
In hospice, I was on the road all day doing home visits. I had the largest territory of the social workers so I did a lot of driving. In pediatrics, I come to work in the morning and I stay in the same place. I vary between the clinic and the hospital. It's really nice to be in the same place.
In hospice, I worked primarily with the patient and their family. In pediatrics, that's still true. The older the patient, the more I'll work directly with them, instead of just their parents.
In hospice, I had a cell phone, a laptop, and landline voicemail. In pediatrics, I have a pager, landline phone and voicemail, and a desktop computer.
In hospice, I was on-call an average 72 hours per month over a weekend. We didn't get any time off for being on-call. In pediatrics, I have one day and one night call per month and 2 or 3 weekends per year, plus a rotating holiday every few years. We get one post-call day after weekend call or holiday call.
In hospice, I provided emotional support, counseling, and prebereavement. In pediatrics, I still do the same thing!
In hospice, I had to all sorts of case management. In pediatrics, we have case managers that take care of that stuff. I still educate families about resources, however.
In hospice, I worked with 3 other social workers. In pediatrics, I work with a billion! (Maybe not quite that many but the support is phenomenal.)
There are many more comparisons I could make but I think you've got the picture!
Monday, December 20, 2010
Recently I lost my first patient, after almost 6 months working here. You might think that it was one of my brain tumor patients. That's who I thought the first loss would be. We're both wrong.
A teenager with sickle cell disease. It makes me so angry because this death could have been prevented. People with sickle cell can grow up to have healthy, productive lives. The operative word is CAN.
If you take your medications daily. If you keep your routine doctor appointments. If you take complications and side effects, from fevers to pain crises, seriously.
This teenager did not. There was a long history of non-compliance, some of which was the parent's fault, some of which could be explained by poverty, and some of which was completely this patient's choice. Even when struggling to breathe during what turned out to be the last few months of their life, this patient still did not take their hydroxyurea and other important medications. Yes, it was too late to reverse the lung damage and heart failure but their life could have been prolonged and they could have been so much more comfortable.
That's why I'm angry. This death should not have happened. If you have sickle cell and are reading this, I implore you to take your medications as prescribed and to keep in regular touch with your sickle cell provider. It can make a world of difference.
This teenager was so sweet, so polite, and deserved so much more. I'm glad that there was time for the patient to express their final wishes, for us to have a good palliative care discussion. They were able to go home and celebrate one last birthday with the family. They died in their mother's arms. As far as hospice goes, everything worked out beautifully.
If only it could have been prevented.
Friday, November 26, 2010
Aidan is 5 and he has acute lymphoblastic leukemia. He likes to draw monsters. His aunt posted his drawings on Etsy to raise money for the family.
I like that Aidan likes to draw monsters. I like that this has turned into a unique fundraiser. But this is the part that I really like.
"The Reeds made a conscious decision to live on one income while their kids were young. Katie has been a stay-at-home mom since Aidan was born; Wylie works full time training technicians who build components for airplanes.
Before our second baby came, we had already cut everything frivolous out of our budget,” Wylie Reed said. “We don’t have a cable package. We don’t drive new cars. ...'"
So many of the families I work with were already living beyond their means before their child was diagnosed with cancer. Whether you have private insurance or not, there are so many extra costs when it comes to a sick child. If both parents were working, often one will need to quit in order to take their child to clinic or stay during hospitalizations. When not seeing doctors, the child needs 24/7 supervision because things can change from moment to moment. This, of course, can be financially draining. If the family was already 2 or 3 bills behind before meeting with me, it's a huge drain on whatever resources I can provide them and generally still doesn't motivate them to change their ways. The fact that this family had already done everything in their power to live economically was very encouraging to me because it is so rare. And when you think about it, that might be why our nation is in the economic mess that it's in.
Aidan's aunt was really touched by his family's plight. Aidan's dad would have to miss a week of work in order to be there for his treatments and so he decided they would need to sell their house to make up for the loss of income. She didn't want this to happen and hence, the Etsy site was born.
At $12 apiece, the monster drawings have raised over$30,000 for the family. They will no longer have to sell their house.
Friday, November 05, 2010
Camps, Fun, and Wishes
Afghans for Angels- www.afaproject.org
-Free afghans or chemo caps for children with life-threatening illnesses
Angels for Hope- www.angelsforhope.org
-Free crocheted angels, butterflies, or smiley faces for those in need of hope
Audrey’s Umbrella- www.braintrust.org/umbrella
-Encouraging mail (cheerful cards, letters, and small gifts) for patients with brain tumors
Believe in Tomorrow- 800-933-5470 6601 Frederick Road, Baltimore, MD 21228 www.believeintomorrow.org
-“Home away from home” respite houses in Maryland for families of children under 17 receiving active treatment for a life-threatening illness
-Includes beach and mountain locations
Benefit4Kids- 1-877-B4K-KID0 www.benefit4kids.org
-Outdoor wish-granting program for children under 17 facing a terminal illness, includes hunting, camping, fishing, and more
Chemo Angels- www.chemoangels.net
-Adopted by a Chemo Angel and Card Angel who send cheerful notes and occasional small inexpensive gifts during chemotherapy or radiation treatment
Childhood Leukemia Foundation- www.clf4kids.org
-Hope Binder- a way of organizing treatment protocols, medicines, doctor's appointments, blood counts, physicians, hospitals, nutrition concerns, insurance benefits, calling cards, informational booklets and more
-Phone cards to use while away from home for treatment
-Wish Basket Program- Available for Baby, Child, or Teen, may include toys/games, pajamas, personal care products, and $50 Wish Card
Children's Wish Foundation International- 800-323-WISH www.childrenswish.org
-grants wishes to children with life-threatening diseases and provides opportunities for families to enjoy themselves away from the hospital environment, national
-Holiday Program, Family Focus, Hospital Enrichment, Young Minds (infant to age 3)
Friends of Jaclyn Foundation- www.friendsofjaclyn.org
-Child is adopted by a college or high school sports team within their geographic area. The child is involved with the team through messages, emails, Facebook, etc. and often invited to attend games with their family.
Hugs and Hope- www.hugsandhope.org
-Child’s story is featured on the website, people can then view it and send Happy Mail (cards, letters, small gifts) to your home
Love Quilts- www.lovequilts.org
-Personalized cross-stitched quilt for children with life-threatening illness
Make a Child Smile- www.makeachildsmile.org
-Child is featured on MACS website, where visitors can then view profile and send cards, letters, and small gifts by mail
Project Linus- www.projectlinus.org
-hand-made blankets and afghans
Songs of Love- 800-960-SONG www.songsoflove.org
-Creates a free personalized original song for children age 1-21 who face life-threatening or life-limiting illness
- Each CD is professionally produced with lyrics containing the child's name and references to all of his or her favorite things. Songs are written and performed in any language in the musical style that the child likes best (pop, rap, rock, etc.)
Special Love- www.specialove.org
-Located in Virginia, camps for childhood cancer patients and their families, including camps and getaways just for parents and siblings
There’s a Monkey in my Chair- www.monkeyinmychair.org
-For children age 4-11 receiving active treatment for cancer or a brain tumor
-Provide a large stuffed monkey that sits in the child’s seat when they can’t go to school, a miniature monkey for the child to keep, backpack, book, journal, disposable camera, and photo album, all to keep the child and their class at school connected
Information and Support
American Cancer Society- 800-227-2345, Nashville chapter- 615-327-0991 www.cancer.org
-Road to Recovery Program- volunteer drivers provide rides for those who do not have access to transportation, not available in all areas
-Look Good…Feel Better for Teens- age 13-17 for boys and girls, helps them cope with how cancer treatment and side effects can change the way they look. Includes tips on skin care, hair, and makeup, plus information about nutrition, exercise, fitness, and teen social issues.
-One free wig per cancer patient
-Search for support groups in your area, access information about cancer and more
American Childhood Cancer Organization (Candlelighters)- www.candlelighters.org
-largest publisher and distributor of free books on childhood cancer
Candlelighters of Middle Tennessee- 615-383-2023, 55 Wyn Oak, Nashville, TN 37205
-Programs and services include Candlelighters publications, support group meetings, teen programs, in-hospital visits, family activities.
Gabe’s Chemo Duck- 615-830-0126 (8am-5pm CST) www.chemoduck.org
-Offers Chemo Duck (play therapy tool), mini-book on how to use the chemo duck as a teaching tool, activity book, and educational DVD
Gilda’s Club Nashville- 615-329-1124, 1707 Division Street, Nashville, TN 37203 www.gildasclubnashville.org
-Free lectures, workshops, classes, support groups, and social activities
SuperSibs- 866-444-SIBS www.supersibs.org
-Information, support, and packages for the siblings (age 4-18) of childhood cancer patients
-On-line information for parents, other family members, teachers, etc.
Aubrey Rose Foundation- 513-265-5801 www.aubreyrose.org
-Assistance with outstanding medical bills not covered by insurance
Cancer Care- www.cancercare.org
- Limited financial assistance for homecare, childcare, transportation, medication and co-pays
Co-Pay Relief– www.copays.org
-Provides co-payment assistance to insured Americans who financially and medically qualify
Friends of Man- 303-798-2342 www.friendsofman.org
-On a case-by-case basis for the needy, they provide assistance with prostheses, wheelchairs, and medical equipment
-Applications can only be submitted by referring professional
Needy Meds- www.needymeds.org
-Information on patient assistance programs (medication at low or no cost) and free or low cost clinics, plus the free NeedyMeds Drug Discount card
Partnership for Prescription Assistance- www.pparx.org
-Helps patients without prescription drug coverage get the medications they need
Patient Advocate Foundation- www.patientadvocate.org
-Provides case management services to patients with chronic, life threatening and debilitating illnesses, serves as advocate and liaison
Personalized Patient Web Page
Care Pages- www.carepages.com
-Free patient blog to communicate with friends and family
-Articles about illness, caregiving, stress management, and more
- A free way to communicate updates about your loved one’s health concerns to family and friends while saving time and emotional energy. Authors add health updates and photos to their personal page and visitors can leave encouraging comments in the Guest Book
Childhood Leukemia Foundation- Hugs-U-Wear Program www.clf4kids.org/hugs_u_wear.html
-Provides a free custom made, 100% human hair wigs with kid-friendly hats
Hats Off for Cancer- www.hatsoffforcancer.org
-Provides free hats to cancer patients
Heavenly Hats Foundation- www.heavenlyhats.com
-Provides free hats to cancer patients
Locks of Love- www.locksoflove.org 561-833-7332
-Hair prostheses provided to children with permanent or long-term hair loss for free or on a sliding scale according to need
-Synthetic hair pieces available for short-term hair loss or for children under age 6
Where There’s a Need- www.wheretheresaneed.org 866-803-6095
-Provides unique Hair Scarf to girls who experience hair loss
Wigs for Kids- www.wigsforkids.org 440-333-4433
-Provides wigs or cranial prosthesis to children under the age of 18 who have lost their hair as a result of medical treatments or health conditions. Children must come from families that cannot otherwise pay.
Tuesday, November 02, 2010
BASE Camp- for pediatric patients with cancer, sickle cell anemia, hemophilia, and other rare/orphan hematological diseases and their siblings living in Florida www.basecamp.org
Camp Boggy Creek- for Florida’s seriously ill children www.boggycreek.org
Camp Good Days- located in New York, camp programs and services are free to childhood cancer or sickle cell disease patients and their families from around the country and the world www.campgooddays.org
Camp Mak-a-Dream- located in Montana, camp programs and services are free to childhood cancer patients and their families from around the country www.campdream.org
Camp Quality USA- 14 camps located throughout the US, camp is free to childhood cancer patients (ages vary according to specific camp) www.campqualityusa.org
Children’s Oncology Camping Association International- directory of camps in the US, Canada, and other countries www.cocai.org
Special Love- Located in Virginia, camps for childhood cancer patients and their families, also offer scholarships and emergency financial relief for Virginia residents www.specialove.org
Benefit4Kids- outdoor wish-granting program, national www.benefit4kids.org
Children's Wish Foundation International- grants wishes to children with life-threatening diseases and provides opportunities for families to enjoy themselves away from the hospital environment, national www.childrenswish.org
Make-a-Wish- wish-granting program, national www.wish.org
Thursday, October 28, 2010
Adam Bullen Memorial Foundation- children and adults with cancer diagnosis in Massachusetts www.adambullen.com
Alex’s Lemonade Stand- information and resources for all cancer patients, financial assistance for patients at certain hospitals www.alexslemonade.org
Andre Sobel River of Life Foundation- assistance for single mothers of childhood cancer patients at certain hospitals, otherwise may be eligible for Every Day Assistance Fund www.andreriveroflife.org
Angel 34- childhood cancer patients, national www.angel34.org
Angel on my Shoulder- unique assistance, camp, and more for cancer patients in WI www.angelonmyshoulder.org
BASE Camp- pediatric patients with cancer, sickle cell anemia, hemophilia, and other rare/orphan hematological diseases living in Florida, hospital lunches, food and financial assistance, milestone parties www.basecamp.org
Bear Necessities Pediatric Cancer Foundation- childhood cancer patients living in or being treated in Illinois www.bearnecessities.org
Brain Tumor Foundation for Children- brain tumor patients at certain hospitals in the south www.braintumorkids.org
Bryan’s Dream- national, brain tumor patients www.bryansdream.org
Cancer Care- patients with cancer, national www.cancercare.org
Cancer Warriors- critically needy childhood cancer patients in Georgia www.cancerwarriors.org
Chai Lifeline- primarily for Jewish patients with cancer, national www.chailifeline,org
Childhood Leukemia Foundation-information and gifts for pediatric cancer patients (any cancer), national www.clf4kids.org
Children’s Cancer Association- childhood cancer patients in Oregon and SW Washington www.joyrx.org
Children’s Cancer Fund of America- childhood cancer patients, national www.ccfoa.org
Children’s Cancer Fund of New Mexico- childhood cancer patients in New Mexico www.ccfnm.org
Children’s Cancer Recovery Foundation- childhood cancer patients, national www.cancerrecovery.org
Children’s Chance- childhood cancer patients in South Carolina www.childrenschance.org
Clayton Dabney Foundation- terminally ill children, national www.claytondabney.org
Cure for Cancers- cancer patients in northern California www.cureforcancers.org
Embrace Kids- childhood cancer or blood disorder patients in New Jersey www.embracekids.org
First Hand Foundation- childhood cancer patients, national www.firsthandfoundation.org
Foundation for Children with Cancer- childhood cancer patients, national www.childrenwithcancer.org
Friends4Michael Foundation- childhood brain tumor patients, national www.friends4michael.org
Friends of Karen- childhood cancer patients in parts of Connecticut, New Jersey, and New York www.friendsofkaren.org
Godstock- chronically ill children in North Carolina www.godstock.org
Have a Heart Children’s Cancer Charity- childhood cancer patients, certain East Coast hospitals and children’s organizations www.haveaheartcharity.org
Hawaii Children’s Cancer Foundation- childhood cancer patients in Hawaii www.hccf.org
Hope Cancer Fund- cancer patients living in California, Colorado, Kansas, Idaho, Indiana, Iowa, Montana, Michigan, Nebraska, and Wyoming www.hopecancerfund.com
Jacob’s Heart Children’s Cancer Support Services- childhood cancer patients living in these California counties: Santa Cruz, Monterey, San Benito and South Santa Clara www.jacobsheart.org
Jake Owen Raborn Foundation- childhood cancer patients, national www.jakesfoundation.org
Jonathan Cancer Fund- childhood cancer patients living in Onondaga County, New York www.jonathancancerfund.org
Kelly Anne Dolan Memorial Fund- terminally, critically, and chronically ill, severely disabled, or seriously injured children living in Pennsylvania, Delaware, and New Jersey www.dolanfund.org
Locks of Love- hair prostheses for childhood cancer patients, national www.locksoflove.org
Melonhead Foundation- childhood cancer patients, national www.melonhead.org
Michael Magro Foundation- childhood cancer patients at Cancer Center for Kids at Winthrop-University Hospital www.michaelmagrofoundation.com
Michael Quinlan Brain Tumor Foundation- brain tumor patients in Kentucky and southern Indiana, educational materials, support groups and counseling, relaxation therapies, financial assistance with medical expenses www.mqbtf.org
Mikey’s Way- childhood cancer patients, distributes toys and handheld electronics at hospitals in New York www.mikeysway.org
Miracles of Mitch Foundation- childhood cancer patients in Minnesota www.miraclesofmitch.org
Mission4Maureen- brain tumor patients, national www.mission4maureen.com
Mission of Hope Cancer Fund- cancer patients living in Michigan www.cancerfund.org
A Mother’s Kiss- childhood cancer patients in Long Island and Metro-New York www.amotherskiss.org
Multi-County Cancer Support Network- cancer patients living in these Tennessee counties: Franklin, Coffee, Moore, Lincoln, Grundy, Marion, Warren, and Bedfordwww.mccsn.org
National Children’s Cancer Society- childhood cancer patients, national www.nationalchildrenscancersociety.com
Nikki Leach Foundation- cancer patients age 16-25, national www.nikkileach.org
No Wooden Nickels- cancer patients in Illinois (hoping to expand by 2012) www.nowoodennickels.org
Oklahoma Brain Tumor Foundation- brain tumor patients in Oklahoma www.okbtf.org
Padres Contra el Cancer (Parents Against Cancer)- Latino childhood cancer patients in southern California www.iamhope.org
Reflections of Grace- national, brain tumor patients www.reflectionsofgrace.org
Rise Above It Foundation- patients age 15-39 undergoing or pursuing clinical trial options, national www.raibenefit.org
The Sarah Grace Foundation for Children with Cancer- patients in the Pediatric Oncology Departments of Schneider Children's Hospital, Winthrop, Columbia, Montefiore, and Nassau University Medical Center www.thesarahgracefoundation.org
Smiles for Sophie Forever- national, brain tumor patients www.smilesforsophieforever.org
Sparrow Clubs USA- any child with a major illness or significant disability with a compelling practical or financial need, national www.sparrowclubs.org
Szott Foundation- childhood cancer patients in the Twin Cities, Minnesota www.szottfoundation.org
The Tomorrow Fund- childhood cancer patients treated at The Tomorrow Fund Clinic Pediatric Hematology/Oncology Center at Hasbro Children’s Hospital www.tomorrowfund.org
United Cancer Assistance Network- support and assistance to cancer patients residing in southeast Missouri and northeast Arkansas www.ucanpb.com
Wigs for Kids- hair prostheses for low-income childhood cancer patients, national www.wigsforkids.org
Zichron Shlome Refuah Fund- Assists Jewish children or adults with cancer with a variety of assistance, national www.zsrf.org
Thursday, October 14, 2010
Tomorrow my work "honeymoon" ends. I have my first day call. My first night call is next Thursday. Thankfully, my first weekend call isn't until January. I told my boss I've really enjoyed not dealing with on-call for the past 5+ months. No keeping my schedule open, no stress, no on-call nerves. It's been beautiful. Still, this is part of the job so I will suck it up and do it. One day and one night call a month and 2 or 3 weekends a year isn't that bad. Is it?
I've been hard at work at compiling a resource list for cancer patients. At first it was only resources my patients can use. Then I realized I was looking up organizations a few times after parents would ask me about them so this list includes everything, all states. If I hear about it, it's going on the list. Once it's done, I'll post a version of it here so be on the look out!
Wednesday, October 06, 2010
I'm so proud of Justin Biehl! I used to babysit him waaaay back in the day. Now he is all grown up and truly making a difference. I can't help but share his message with you all and offer you an opportunity to help.
Facebook and Twitter addicts sign up to Shutdown for one day in support of people with autism
Justin works at Giant Steps, a therapeutic day school for children with Autism in Lisle, IL. They are one of three organizations in the US who have been selected to receive a portion of the funding under this global fundraising campaign. For only $5, you can participate and get your charity app (CHAPP) that serves as a badge of solidarity for those affected by Austism.
• Autism affects approximately 1 in 100 children and is a lifelong condition that impacts every part of a person’s life
• People from all nationalities and cultural, religious and social backgrounds can have autism
• While there is currently no ‘cure’ for autism, there are a number of interventions that promote learning and enable development to occur. The sooner interventions start, the sooner individuals and families can experience the benefits.
Can you get by without Facebook or Twitter, just for one day?
Social communication is one of the biggest challenges for people with autism. But on November 1, the world will have some idea of what this is like.
Today more than 40 autism charities and a team of celebrities worldwide are joining forces to launch a global campaign challenging the world’s 4.5 billion social media users to shutdown their networks just for one day.
The Communication Shutdown campaign encourages Facebook and Twitter users to make a donation and receive a charity app or (CHAPP) that will signal their support and intention to boycott their accounts on November 1.
For a $5 donation, the CHAPP will connect with the user’s Facebook and Twitter accounts by placing a shutdown icon over their profile picture.
From today the Communication Shutdown CHAPP will be available on the campaign website www.communicationshutdown.org. The site will also host a global mosaic where supporters can see their profile pic next to celebrities who have signed up.
Even celebs want to get involved with famous names including Holly Robinson Peete, supermodel Miranda Kerr, and Temple Grandin ready to shutdown.
Get your CHAPP today, then forward this message onto ten people and become part of the largest, global social experiment ever created.
Only $5 to participate and help? I think we can all spare that much. Not only will this directly help children with autism, it will help us understand, to a small degree, their struggle with social communication. I've been blessed to know several people and children with autism and welcome any way I can better understand their world. I have my CHAPP. Do you?
Monday, October 04, 2010
Amy at New Nostalgia is a longtime blogger and disclosed her breast cancer diagnosis a month ago. She writes honestly about her fears and her struggles, but also the blessings, the ways she has seen God at work during this time. She invited her readers to join her CarePage but still posts regularly on her blog. Recently she shaved her hair off. Her reaction, her family's response, and her kids' decorations on her newly shorn head absolutely blew me away. Go visit Amy and leave an encouraging comment.
Libby at Don't Waste Your Cancer is 26 years old, a young mother and wife, and was diagnosed with lymphoma in July. She just grabs your heart! Read her account of her current emotional state. Be inspired by her and her husband's decision to embrace this new path in their relationship. I know I am.
Monday, September 27, 2010
First, my new employer has much stricter guidelines regarding social media. I really, really don't want to share a patient story that could be in any way tracked back to me or to my work. While I have some great stories I'd like to share, I'm just not comfortable quite yet. I'm hoping the longer I work there and the more pains I take to remain confidential/anonymous, the more open I'll be able to be.
Second, I don't have as much time. I have another blog and I've been doing more with that since friends and family like to check up on my new life. Also, when I'm writing there, I can write about whatever I want and not worry about breaching confidentiality! There's just a lot going on here and I have to be more choosy on how I spend my time.
Third, it used to be that I just had a hospice and bereavement scope. Now I have a pediatric, neuro-oncology, sickle cell, hematology, etc. scope. It's so broad and I'm not sure what you all want to hear about! There is so much I could write about for any one of those categories. As I've been learning at work, I've been trying to jot down notes of what might be useful to my Confessions following. If there's anything you'd like to know more about, please let me know.
Fourth, I don't want to lose sight of the fact that I am indeed a social worker! I can't just write about sickle cell and death and bereavement work. I need to write more about what it means to be a social worker and what my role is within my division at work. Since I'm still learning what that entails, you can expect that I'll be posting about it at some point.
Fifth, I think that I'll continue to post once or twice a week, possibly more depending on what I have going on and what topics are of note. I check the email connected to this blog about once a week so if I don't respond right away, please be patient. I'm sure the balance between work, play, and blogging will arrive sooner or later.
Thanks as always for reading!
Thursday, September 23, 2010
When your child has a chronic or terminal illness, it’s important to have a back-up plan in case your child requires an unplanned trip to clinic or hospitalization. Planning ahead will make these times less stressful.
Keep the hospital or clinic phone number near your home phone for easy access. Program the phone numbers into your cell phone.
Let your family and friends know about your child’s condition and what they can do to help. If you have other children, identify who else is available to take them to school/daycare and pick them up in case a clinic visit runs longer than expected. Also identify who is able to watch them during the day or overnight if your child is hospitalized.
Inform your employer of your child’s condition. You may need to miss work at times due to your child’s healthcare needs. You may need to utilize benefits through the Family Medical Leave Act; your human resources representative can tell you more about your employer’s policy regarding FMLA.
Talk to your child’s school or daycare about his or her condition. Make sure that they understand what your child needs to manage the illness and provide a plan of action for emergency situations. Request that the teacher stay in contact with your child during hospitalizations and absences. Talk to the school nurse about medication schedules and coping strategies.
Keep a bag packed in case of hospitalization. Keep it in a place that is easily accessible in your home. This way you can simply grab it and go.
Hospital Bag Checklist
Contact list (include family and friends that want to be informed or who may be tending to your other children or household needs)
Comfortable clothes (parent and child)
Pajamas (parent and child)
Underwear/socks (parent and child)
Hairbrush or comb
Snacks/ food items/money for cafeteria (patients receive 3 meals a day; one free guest tray is provided per room through Katie’s Helping Hands. Parents will need to bring their own food for other meals or buy food from the cafeteria on the 2nd floor. Snacks are also available in the Ronald McDonald Hospitality room on the 5th floor.)
Anything else you would add to this list? You have permission to make copies of this handout but please credit Confessions of a Young(Looking) Social Worker as your source.
Monday, September 20, 2010
Many individuals with sickle cell disease do not show obvious signs of disability. Even though it is a chronic illness, it may not be easy to obtain financial benefits. Eligibility for Supplemental Security Income (SSI) is based on the extent of the disability as well as income eligibility. You must qualify in both categories to be determined eligible, which can make it difficult for individuals with Sickle Cell disease to qualify for SSI. One of the first questions parents ask me when their baby has been diagnosed with sickle cell is whether they can apply for SSI. The answer is generally no because most babies experience few complications. As the child gets older, this, of course, could change. SSI looks at a comprehensive picture of the individual’s condition, including the number and dates of hospital admissions, emergency room visits, acute visits, organic and physical dysfunctions, and the blood count, as well as the need for blood transfusions.
The information below is straight from the SSI website:
Hematological Disorder Guidelines
A. Sickle cell disease. Refers to a chronic hemolytic anemia associated with sickle cell hemoglobin, either homozygous or in combination with thalassemia or with another abnormal hemoglobin (such as C or F).
Appropriate hematologic evidence for sickle cell disease, such as hemoglobin electrophoresis must be included. Vaso-occlusive, hemolytic, or aplastic episodes should be documented by description of severity, frequency, and duration.
Disability due to sickle cell disease may be solely the result of a severe, persistent anemia or may be due to the combination of chronic progressive or episodic manifestations in the presence of a less severe anemia.
Major visceral episodes causing disability include meningitis, osteomyelitis, pulmonary infections or infarctions, cerebrovascular accidents, congestive heart failure, genito-urinary involvement, etc.
A. Recent, recurrent severe vaso-occlusive crises (musculoskeletal, vertebral, abdominal); or
B. A major visceral complication in the 12 months prior to application; or
C. A hyperhemolytic or aplastic crisis within 12 months prior to application; or
D. Chronic, severe anemia with persistence of hermatocrit of 26 percent or less; or
E. Congestive heart failure, cerebrovascular damage, or emotional disorder as described under the criteria in 104.02, 111.00ff, or 112.00ff.
Thursday, September 09, 2010
The highlight of the week is a 5 day virtual conference and it's free! There are 4 panelists every day and there will be a chance to call in with your questions.
Spend some time perusing the site for helpful articles for those living with chronic illnesses, like what to do if a friend thinks you're faking your illness or dealing with aggravations your illness creates. This is a great resource for anyone with a chronic illness. It is also great for those without chronic illness to see life from someone else's point of view and to be more understanding and compassionate.
Monday, September 06, 2010
This continues to happen to me on a weekly basis. I'm into my third month now and I still love it. (Talk to me again next month when on-call starts. The rose-colored glasses might start to fade by then! But even with this, compared to the amount of on-call I did before and the compensation I'll receive now, it seems doable.)
My latest pinch me moments:
-helping a teen with sickle cell and severe pain develop coping skills as another way of dealing with his pain besides medication
-meeting with the grandparents of a patient with newly diagnosed brain cancer
-explaining how SSI works when it comes to sickle cell (post to come soon)
-letting financially strapped families know about the wonderful resources available to them (brain tumor patients)
-interacting with the cutest kids
-a father of a patient (not mine) told me that the oncology wing was staffed by the most cheerful and professional people and this has made all the difference for him. Incidentally, he was a pretty cheerful person himself!
Saturday, September 04, 2010
I've only been working with sickle cell patients for a couple of months but that's long enough to know that so much more education is necessary. Education for the public, but also education for the patients and their families.
Sickle cell disease is an inherited blood disorder that affects red blood cells. Basically, the red blood cells don't get enough oxygen, which causes them to become sickle (or crescent) shaped. In sickle cell disease, red blood cells contain mostly hemoglobin* S, an abnormal type of hemoglobin. This makes it difficult for them to move through blood vessels and they can get stuck. This then causes less blood flow in that part of the body, which causes damage. This typically results in pain but there is a host of complications associated with sickle cell, including acute chest syndrome and stroke.
Thanks to newborn screenings, sickle cell is detected at birth but babies must have another positive screening before they are officially diagnosed. This is a chronic illness without a cure. If the child has a full-sibling, they can be HLA-typed and if there's a match, they may be eligible for a transplant. Otherwise, patients take penicillin for the first 5 years of life to protect from from infection. If a child under 5 has a fever, they are typically admitted to the hospital because of the complications related to sickle cell. If a child has sickle cell disease and starts having more complications, they may start taking hydroxyurea or get blood transfusions. It's not easy to live with a chronic illness but these medications vastly improve quality of life and can prevent complications from occurring.
If you carry the trait and your partner carries the trait, you have a 25% chance of passing sickle cell disease on to your child and a 50% of passing the trait on. Genetic counseling is important before SC patients become sexually active and/or are considering reproduction.
Other measures to improve health are staying hydrated and avoiding cold temperatures, as well as maintaining a good diet.
As the following PSAs show, sickle cell affects everyone. It is not an "African American disease" as is widely believed. Every race, every background, man or woman.
Please spread awareness of sickle cell disease in your community!
Friday, September 03, 2010
Karl Dimachki, a 31-year-old Australian construction worker was diagnosed with tongue cancer about a year and a half ago. He had his lymph nodes and half of his tongue removed. He was told he wouldn't be able to talk properly and wouldn't be able to sing ever again. He was told he likely wouldn't see any progress for 3 or 4 years, optimistically speaking. Dimachki didn't let that stop him. This past Tuesday night, Dimachki tried out for the Australian version of "The X Factor." His version of Lionel Ritchie's "Hello" brought judges and audience alike to tears.
I love his intro quote: "I'm just here to prove a point: If you have a dream, go on and do it, 'cause God will always put a hero inside you."
His story is inspirational to be sure. Will he make it far in the competition? I doubt it but he deserves the opportunity to reach for his dream. Who knows? He's come this far. He could prove judge Kyle Sandilands- and me- wrong.
Friday, August 27, 2010
If this is your first time browsing here, allow me to give you a brief background. I was a hospice social worker and child/teen bereavement specialist for 5 years. I loved it! I started this blog about 4 years ago, originally so friends and family could learn about my work and play. Then, a couple of years ago, Christian Sinclair at Pallimed.org discovered I was going to take my patient skydiving and this blog hasn't been the same since. I realized that more people within the health care and social work communities were starting to take notice and began the process of making this blog purely professional.
This brings us back to present day. A few months ago I moved to Nashville on a leap of faith and landed my dream job. I'm a pediatric social worker working with children who have brain tumors, Sickle Cell disease, and other hematological disorders. To say that I'm in the right place is an understatement. I still have close ties to the hospice world though. You can expect to read a mishmash of pediatric and hospice-related posts.
So please, take a moment to peruse and familiarize yourself with this young (looking) social worker. Become a follower so you can stay tuned with my latest post. And please offer feedback because the beauty of any blog is the opportunity to learn from one another.
Thanks for stopping by!
Thursday, August 26, 2010
I was placed at the local county health department in their pre-natal and family planning clinics. Before I could start, my supervisor hauled me in to make sure I would be OK with doing options counseling. Some people feel so strongly about the issue that they would try to sway the client in one direction or another, which is the opposite of options counseling. I'm a fairly non-judgmental person and I have fully grasped that what's right for me might be wrong for you. I knew that I could be non-biased when it came to options counseling. My supervisor was appeased and I was allowed to start my placement. I learned a lot that year. I can hold my own in any conversation about pregnancy and birth control- a plus when it comes to my pregnant and married friends. At the top of list: what bad supervision looks like. While I met some great people and feel like I did make a difference with some of my clients, especially the girls I followed in the Teen Parent program, I walked away knowing that it wasn't for me. I was resolute in my desire to be a medical social worker and pressed on toward my goal to work with children with cancer. Seven years later, that dream came true.
What is interesting in all of this is that your fieldwork experience can show up in your present workplace.
A 15 yo girl with Sickle Cell came to clinic. I met with her, did a basic assessment, and began establishing rapport. She's a delightful girl and hopes to be a Sickle Cell doctor someday. I moved on to see some other kids at clinic when I received a page. The 15 yo girl had a positive pregnancy test. And so I went back to the exam room and sat with her.
Tears silently sliding down her face, nose running, vacant expression. Dazed. Shocked.
Slowly I was able to learn the details. Slowly I was able to help her decide who she would tell and when. Slowly I presented the options to her. Then I let her know she didn't need to make a decision today. Yet, some changes would be made. In case she decided to continue with the pregnancy, she needed to stop taking her hydroxyurea. If she decided to continue with the pregnancy, she would be considered high-risk and would need to see an ob/gyn as soon as possible.
I wondered what she would decide. She would need to think about how a baby would impact her life. Who would watch him or her while she was at school? Would the father contribute financially? What about her career goals? Maybe adoption would be a better option. There are so many more options with adoption now- open, closed. She could still be a part of the child's life if she wanted to be. How would it feel to watch someone else raise your child? Grateful, perhaps, but maybe sometimes jealous or regretful? Or perhaps she would decide to terminate the pregnancy. It was early enough that no one at school would ever know. She could graduate, go to college, medical school, whatever she wanted. Only, she would still know. Would she feel guilty? Would she wonder about this little one and who he or she would have grown up to be?
It turns out I was the perfect social worker for this girl. My options counseling training came right back to me, as if I'd been in the health department the day before. I can't say what she decided to do because that's not really the point. I only know that we can't escape our backgrounds or training. And while I never expected my time in the health department to make a big difference in my professional repertoire, today it did.
Tuesday, August 24, 2010
Now, in a new place, there's a new style. It was an adjustment to figure out a format that worked for me. I looked at old psychosocial templates and reviewed the notes of some other social workers and finally came up with something that works for me. After I finish a note, I save it as a draft, print it out, and then wait for my supervisor to review it before saving it to the chart. This has been going on for about 5 or 6 weeks. I've really appreciated the constructive criticism I've received, especially since it's the first time someone has critically reviewed my documentation. However, I'm ready to start saving notes directly to the chart!
When I met with my supervisor this week, she said she didn't think she'd be reviewing my documentation for much longer! She said I was able to adjust really quickly to this workplace's style and I've been able to organize my notes in a format that's easy to read and concise. She might have also said something along the lines of using my format to create a template (!) but I still had the words "I won't be reviewing this much longer" ringing in my ears. What amazing feedback! It confirms again that this is the right place for me. Now if I could only find time to do all my charting...
Thursday, August 19, 2010
- Gberger: First, I must say that Karen has been such a source of encouragement to me since I found her blog this past spring. She is a faithful commenter on this blog and has cheered me as I've started my new job. Her beautiful daughter Katie died 3 years ago this past week. Her continued exploration of loss and openness to growing and giving back is inspiring. This account of her AHA moment is not to be missed.
- Giving Up on Perfect: After losing a loved one, Mary polled her readers on how to help a friend who's lost a loved one and then featured the helpful responses. You can spot my contributions, of course, but that's not why I'm highlighting this post!
- Natalie Lloyd: Natalie reminisces about blackberry summers and touchingly honors her granny. "I think people we love, those who've gone on ahead, are thinking about us, celebrating over us, praying for us. I wonder if they get to catch glimpses of what we're into down here. Sometimes I like to picture Granny whooping it up somewhere on a back-porch in Glory, clapping for me and shouting, 'That's my girl!'"
- Rachel Held Evans: I love Rachel's approach to faith and doubt. The recent loss of a family friend led to today's reflection: Doubt and the Ritual of Grief. "What I loved about the rituals of grief—the viewing, the flowers, the stories, the songs, the laughter, the sobbing, the burial—was that they forced me to keep moving, to avoid getting stuck in a place of despair...I may simply be “going through the motions,” but at least I’m moving."
For the most part, we were blessed with support and love; friends ran errands for us, delivered meals, sat in hospital waiting rooms, walked, talked and cried with us. But a couple of friends disappeared entirely. During the year we spent in eating-disorder hell, they called once or twice but otherwise behaved as though we had been transported to Mongolia with no telephones or e-mail...Given our preoccupation with our daughter’s recovery and my husband’s mother’s illness, we were no doubt lousy company. Maybe we’d somehow offended our friends. Or maybe they were just sick of the disasters that now consumed our lives; just because we were stuck with them didn’t mean our friends had to go there, too.The author examines several common responses to someone else's trauma. As you read through, you may be surprised to self-identify with the responses. It's not enough to consider how other people have abandoned you in your time of need without examining if you have acted in the same way. Feeling grateful because it didn't happen to you and then guilty? I've been there. I'm sure we've all said the wrong thing at a funeral at some point. Before I experienced deep loss, I'm sure at some point I told people their loved one was in a better place. Now, after experiencing loss, I know that it is fine for me to say that my loved one is in a better place. But if anyone else tells me that, I am liable to smack them.
The latter part of the article focuses on "pseudo-care," in which help is offered but never followed up on. The classic "call me if there's anything I can do" when most people are too exhausted to think about what you could do or to even remember to call. While an expert dismisses telling someone you'll pray for them as ineffectual, I do believe in the power of prayer. Perhaps it would be more appropriate to pray for the person in the moment, continue praying for them throughout the weeks ahead, but also do something tangible like a load of laundry or running errands.
This may be the article's biggest point: "True empathy inspires what sociologists call instrumental aid. “There are any number of tasks to be done, and they’re as personal as your thumbprint,” Dr. Rainer said. If you really want to help a family in crisis, offer to do something specific: drive the carpool, weed the garden, bring a meal, do the laundry, go for a walk."
I'll never forget the friend who left a bouquet of flowers outside my apartment with a card the day I returned home from my grandma's funeral. Or the girls I mentored in youth group who dropped off chicken quesadillas and a salad while my great-aunt was declining. (The fact that these teen girls thought of this on their own and followed through was astounding to me!) The cards, the emails, the friends who dragged me out to dinner when I was coping with my grief by becoming a hermit...priceless. I strive to remember these blessings more than the friends and family who dropped away.
How have your loved ones responded to times of difficulty? What do you do to care for others? Does this apply to your professional world at all?
Sunday, August 15, 2010
In one of her first posts, she notes: "there are many things that we can do to prepare ourselves so that the end of our lives are as non-stressful as possible. People on their deathbed shouldn’t have to worry about Medicaid applications. They shouldn’t have to worry about paying for a Notary or appointing a power of attorney. They should all be able to focus their energy on their family, preparing for the next life, and dying peacefully, pain-free, and worry-free. It really is important to figure those things out now, so that we have the time and energy later in life to focus on what really matters at that time." A great observation for someone who was only a month in to the job!
And social workers everywhere, regardless of specialty, will appreciate her response to people who want her to "fix" patients.
Be sure to check her out and leave a comment of support!
Thursday, August 12, 2010
I think it's possible to affirm where people are coming from without letting affect me and my work. I learned that lesson well when co-workers would start gripe sessions after certain meetings. I realized that I could sit and complain with them and generally feel worse afterward because nothing would change and I would just get angrier. Or I could listen, try to redirect the conversation, and focus on the positive. And when that failed, I just walked away. It definitely helped my attitude stay above board.
What about you? How do you stay above office politics? How long did your rose-colored glasses stay on?
Wednesday, August 11, 2010
Wednesday, August 04, 2010
Hold My Hand follows the life and times of a nursing home social worker. I appreciate that HMH shares the story and reflects on her own actions and reactions. She writes a moving account in The Language of Love about a care conference with a resident and the resident's daughter. Don't be surprised if you find yourself looking for kleenex by the end.
I'm fascinated by OrthoOnc's use of technology! First, he test-drives the iPad in the operating room. Then how the iPhone's FaceTime could be used for telemedicine.
A primary care physician is the brains behind Musings of a Distractible Mind. Dr. Rob's posts are sometimes funny, sometimes serious, and always worth reading. A Letter to Patients with Chronic Disease explores how to improve the patient/doctor relationship and has generated follow-up posts and lots of comments. If that's not enough to make you a subscriber, then read Failure, an examination of whether a patient's death or suffering equals a doctor's failure.
Pallimed, as always, has a wealth of possible PCGR contributions. New Pallimed contributor Holly Yang discusses findings in the Quality of Death report, which ranks end-of-life care from 40 countries. She also wisely links to one of my favorite Pallimed posts from July: the Life Before Death website.
You can't talk about Pallimed without mentioning Pallimed: Arts. A perfect blend of my interests! I was struck by this profile on musician Fred Hersch. Diagnosed with HIV at age 29, he was recently interviewed by NPR's All Things Considered. He notes, ""For at least the first number of albums I made on my own, I really had this kind of dramatic feeling like this is going to be my last statement and I just wanted to create enough of a body of work that if I died I might somehow be remembered." How's that for living as if you were dying?
One of my favorite recent finds is Dr. David's Blog, the musings of a pediatric oncologist. Absolute must-reads: an ethical dilemma ("Who gets to decide if the 5% chance of a cure is worth the risk? Is this chance of success so small as to qualify as futile?") and tackling the hardest question: "How much time do I have left?"
Taking the scenic drive's author is a PICU RN who plans to go to medical school. Read through her ethical dilemmas and ponder what you would advise.
Her profile says she's a family doctor, mother of 3, and relearning life without her son Henry, who died about a year and a half ago. Her posts about grief are raw and honest. Her posts about patients are insightful and compassionate.
An ER nurse writes about the difficulty in have palliative care conversations in the emergency room. This also leads to reflection on the loss of a friend and the conversations she had with his family.
A Memorial Sloan-Kettering Cancer Center intern reflects on this article: Americans are treated, and overtreated, to death. Conveying that hospice or palliative care is not "giving up hope" may be one of our biggest mountains to climb.
Sarah is not a palliative care or hospice blogger. Her mom died 3 years ago. She just found out the FDA revoked her mom's main chemo drug "for not helping patients." Her response, her pain, her anger is not for the faint-hearted. This is the aftermath of grief.
GeriPal draws attention to the Atul Gawande article Letting Go: What should medicine do when it can't save your life? and then offers this response. Take the time to read Gawande's article first. Also of note, Why not palliative oncology?
[Ed. note: A Pastor's Cancer Diary also offers worthy commentary on the aforementioned Atul Gawande article.]
As I've compiled the posts for PCGR this month, it seems an unintentional theme has emerged. We need more conversation. More conversation about treatment options and when it's time to consider palliative care and hospice. More conversation about our wishes during treatment and at the end of life. More conversation about how loss affects us. I can only hope that PCGR enables us all to take time for these conversations, which inevitably will help us do our jobs better. I know this community has helped me. May it also be a blessing to you.
PCGR has subscription options; you can follow by email or RSS feed. An aggregated feed of credible, rotating health and medicine blog carnivals is also available.
Tuesday, August 03, 2010
How do you comfort a family that may lose their child? You listen. You let them express their anger. Their fear. The unfathomable grief. You don't defend anyone's actions or delays or the injustices of life. You apologize when you can. You advocate when you can. You listen. You accept. You are the middleman. You are the punching bag.
When they have vented, when they are spent, they will look at you and say thank you for listening. And maybe apologize for some of their words. They don't need to apologize. You'll look at them with compassion and simply say, "that's what I'm here for."
Tuesday, July 27, 2010
I know in a few weeks, I'll be irritable about not having time to eat or chart. Right now, it feels good to be used by staff. I think I'm a bit more proactive than my predecessor but I realize I'm still figuring out the ebb and flow of my service so perhaps I have the time to be more proactive. In any case, I've been getting good feedback from everyone. The next few days promise to be equally busy. And you know? I'm looking forward to it.