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-

-Free afghans or chemo caps for children with life-threatening illnesses

Angels for Hope-

-Free crocheted angels, butterflies, or smiley faces for those in need of hope

Audrey’s 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

-“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

-Outdoor wish-granting program for children under 17 facing a terminal illness, includes hunting, camping, fishing, and more

Chemo Angels-

-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-

-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

-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-

-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-

-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-

-Personalized cross-stitched quilt for children with life-threatening illness

Make a Child Smile-

-Child is featured on MACS website, where visitors can then view profile and send cards, letters, and small gifts by mail

Project Linus-

-hand-made blankets and afghans

Songs of Love- 800-960-SONG

-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-

-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-

-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

-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)-

-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)

-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

-Free lectures, workshops, classes, support groups, and social activities

SuperSibs- 866-444-SIBS

-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

-Assistance with outstanding medical bills not covered by insurance

Cancer Care-

- Limited financial assistance for homecare, childcare, transportation, medication and co-pays


-Provides co-payment assistance to insured Americans who financially and medically qualify

Friends of Man- 303-798-2342

-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-

-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-

-Helps patients without prescription drug coverage get the medications they need

Patient Advocate Foundation-

-Provides case management services to patients with chronic, life threatening and debilitating illnesses, serves as advocate and liaison

Personalized Patient Web Page

Care Pages-

-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

Wigs/Hair pieces

Childhood Leukemia Foundation- Hugs-U-Wear Program

-Provides a free custom made, 100% human hair wigs with kid-friendly hats

Hats Off for Cancer-

-Provides free hats to cancer patients

Heavenly Hats Foundation-

-Provides free hats to cancer patients

Locks of Love- 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- 866-803-6095

-Provides unique Hair Scarf to girls who experience hair loss

Wigs for Kids- 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!


BASE Camp- for pediatric patients with cancer, sickle cell anemia, hemophilia, and other rare/orphan hematological diseases and their siblings living in Florida

Camp Boggy Creek- for Florida’s seriously ill children

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

Camp Mak-a-Dream- located in Montana, camp programs and services are free to childhood cancer patients and their families from around the country

Camp Quality USA- 14 camps located throughout the US, camp is free to childhood cancer patients (ages vary according to specific camp)

Children’s Oncology Camping Association International- directory of camps in the US, Canada, and other countries

Special Love- Located in Virginia, camps for childhood cancer patients and their families, also offer scholarships and emergency financial relief for Virginia residents


Benefit4Kids- outdoor wish-granting program, national

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

Make-a-Wish- wish-granting program, national