Wednesday, August 03, 2011

In Which I Quit

Things have been quiet here for several months. I was limited by my organization's social media policy, to be sure, but I was also limited by my own concerns.

You see, I haven't been happy in my work since January. I survived a brutal weekend on-call, a coworker went on bedrest leaving me and another coworker to cover, and my division continued to use me inappropriately. I can't tell you how many times I learned about a tumor progression or strained family dynamics weeks or months after the fact.

The division saw me as the bill payer and resource keeper. Social work is so much more than that.

Was I able to educate families beyond the division's limited use of me? Absolutely. Was I able to do a lot of good? There's no doubt in my mind.

But I felt like I was drowning there. And in the midst of all this, my old dream of writing resurfaced.

My last day of work was June 30. I can't say that I'll never come back to social work- it is in my blood after all- but I want to see where writing will take me. I'm burned out and need to reacquaint myself with myself.

In the month since, I haven't missed being there at all. I'm infinitely happier. I know without a doubt it was the right decision.

I miss my coworkers and the families I worked with but I'm excited to see what will happen next. I don't regret my time there- it wasn't all bad- but it's definitely time to move forward.

Thank you, dear readers, for all you've helped this blog to be.

Sunday, January 02, 2011

On-Call Superstitions

I'm in the middle of my first weekend on-call. It's strangely scheduled due to the holiday. On Friday night, off New Year's Day, back on for Sunday and then Monday, which is the observed holiday. Let's just say I can't wait for 8 am Tuesday morning!

I realized I have a few things that I will or will not do while on-call, as if these things can improve my odds.

I don't make plans. I hate leaving things early and I'm always paranoid I won't hear the pager.

I don't light candles when I'm at home.

I don't make any meals that involve lots of preparation. Quick and easy is the name of the game.

I will often wear more office-appropriate attire while I'm home. If I'm ready to go, then I won't be called? It doesn't seem to make any difference but in my mind.

I try to catch up on things around the house. Cleaning, picking things up, laundry.

If I'm able to make it to church, I sit in the back at the end of the row. Just in case.

I thank God for every hour, or half hour, that I do not get paged. It helps me keep a more peaceful spirit. If I do get paged, I start praying for wisdom and strength!

What are your on-call superstitions?

Friday, December 31, 2010

Pediatric vs. Hospice Social Work

Can you believe I've been at this for 6 months now? Sometimes my pediatric hem/onc world doesn't seem that far from what I used to do in hospice. And yet, there are some noticeable differences!

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

The First One

You don't go into hematology/oncology without knowing that at some point, one of your patients will die. You hope they won't, to be sure. However, statistics don't lie and no cancer center can completely beat the odds. I didn't know how long I would be at my new job before I lost my first patient. I wasn't sure if the death of a patient here would be different from the death of one of my former hospice patients.

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's Monsters

I hope you've already come across this story but just in case you haven't...

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.

Read the family blog here. Check out and buy Aidan's drawings here.

Friday, November 05, 2010

More Pediatric Resources

Here are resources related to support, information, fun stuff, wigs, and more. As always, comment if you're aware of others!

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.


Medical Expenses

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 Reliefwww.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

CaringBridge- www.caringbridge.org

- 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


Wigs/Hair pieces

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

Pediatric Cancer Camps and Wish-granting

This is a very incomplete list of camps and wish-granting organizations. Some are state-specific, some are national. Please comment with any others that you're aware of!

Camps:

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


Wishes:

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