Leukemia Foundation of Arizona

The following vignettes are excerpted from patient assistance requests received from social workers and counselors on behalf of families struggling with the challenges presented by childhood leukemia:

We would like to take the opportunity to recognize and honor Alex Rivera, a courageous young man who is fighting a rare form of Leukemia, CML.  After his diagnosis, Alex began using his middle name rather than his given name of Michael, as a way of commemorating that he is a different person now in many ways.

During the course of his treatment, he has become acutely aware of the difficult experiences that children even younger than he were encountering. He has vowed to do all he can to bring public awareness to life threatening childhood illnesses, and to volunteer to help at every opportunity. He has volunteered at many events, and as his mother, Angela told us, “Alex is my HERO!!  If you ask him why he does this, he’ll tell you…’It’s for the Kids’…they are his heroes and his inspiration!”

Alex recently submitted a piece of art for an exhibit called “Art in Healing” at Tohono Chul Park.  His artwork was among those selected to be included in the special exhibition, which took place from March 11^th-May 16^th, 2010.  Alex’s piece reflects his life before cancer.  Accompanying the piece is his commentary:

“My whole life I dreamed about being a Professional BMX Bike Rider but on the night of May 8, 2008 all those dreams changed.  At the age of 15 I was diagnosed with a rare Leukemia called Chronic Myelogenous Leukemia.  Not only is CML different than all the other childhood leukemias, the treatment for CML is also very different. Iinstead of the usual radiation treatment sessions, which would have killed me, I have had to take my chemotherapy treatment in pill form every night since my diagnosis. Unlike other cancers where once the patient is in remission, treatment stops, for CML patients, even when we are in remission we must continue to take our chemo pills daily for the rest of our lives.

My art work has helped me to get my emotions out, like a writer who lets his thoughts flow on paper.  When I look at my designs I see a story that I wrote; a story of healing.  “Past Memories” is actually a photo of me doing a trick on my bike just weeks before my diagnosis. My dreams did not die that night on May 8^th they just changed!!”

Alex’s story is encouraging and inspiring-please join us in celebrating his dedication and achievements. The below picture is Alex Rivera at Tohon Chul Park’s exhibition   Art that heals.

• The picture below is one of the many patients that we have been able to help.  This beautiful young girl has been waging a courageous battle with Leukemia.  We wish her all the best as she progresses through her treatment program.                                                                                                    

 

 

 

• We have a five year old patient diagnosed with ALL, whose single mother needs assistance with the mortgage payment this month. Mom works as a waitress, and has found work to be slow this month, which is why she has fallen behind financially.  This is definitely not a pattern for her, and any assistance available would be greatly appreciated.
• We are submitting a request for rent assistance.  This family resides in Nogales, Arizona, and comes to Tucson regularly for chemotherapy for their young child with ALL.  The mother was bringing the patient to the hospital with no problem until this month, when she gave birth.  The father had to take off time from work to transport the patient for treatment.  Unfortunately, the father’s employer laid him off rather than giving him a leave of absence. The father has been offered a new job, but this month’s rent payment is overdue. Currently this is an emergency situation, but with a solid plan for the future.
• This request is for the family of a little girl who has AML. She had a bone marrow transplant in January, and relapsed in December. She is currently in the hospital recovering from her second bone marrow transplant.  Her widowed mother is unable to work due to the child’s medical situation, and supports herself and her three children on Social Security Survivor’s income, along with the kindness of friends. The current most pressing need is repairs for her car. The family resides in Phoenix, and the mother stays in Tucson to be with her hospitalized daughter. She returns to Phoenix several times a week to be with the other children, who are attending school and cared for by family friends. As you can see, the car is vital to this family.  The Leukemia Foundation of Arizona was generous to this family during the first transplant, and we are seeking your assistance once again.
• Letter from Phoenix Children’s Hospital; Center for Cancer and Blood Disorders; Pediatric Oncology Social Workers:   To whom it may Concern:  Families whose children have leukemia are already facing one of the most difficult and stressful times in their lives.  When the medical costs add to a family’s financial burden, it makes the situation even more difficult.  In addition, one of the parents often has to quit work or reduce their work hours to adequately care for their child.  The Leukemia Foundation of Arizona (LFA) reduces the financial stress faced by the families, if their resources allow.  Their financial application form is simple and easy to complete.  In addition, the request for assistance form’s ease of use, checks are prepared to the vendor, and are sent directly to the family.  May of the families we work with could not have kept current on house payments, utility payments or other bills without the support of LFA.  If a family has received a shut-off notice, the LFA will respond immediately and work with the vendor to ensure continuity of service.  LFA also assists by providing us with discretionary funds that we can access quickly, if an immediate need arises.  For example, we used these funds to grant the request of one of our children who was losing his battle with leukemia and wanted a “stress” ball.  We could not save his life, but we were able to provide a tangible gift that made the end a little easier for him and his family.  Our families are extremely appreciative of the assistance they recieve from LFA.  Their asisatnace helps families facus more enery on caring for their ill child, rather than worrying about their bills.  This resource has been a reliable, easily accessed opportunity for our families to ease their financial burden.                                                            Sincerely, Caley Nelson  Marcia Soldavini  Gina Degraw  Rhonda Baldwin
• Report to the Leukemia Foundation of Arizona from Tu Nidito        LFA responds immediately to all requests with a minimal turn around time between request and payment.  Tu Nidito and its families are very fortunate to have a resource like LFA; it is the only organization of its kind providing assistance to benefit children diagnosed with Leukemia.   Tu Nidito’s Courage Bead Program began in 2003 as a way to recognize and honor the journey children take when they are diagnosed with a life-threatening illness.  Currently 50% of the children enrolled in the Courage Bead program are diagnosed with Leukemia.  When a child is first diagnosed, a Tu Nidito staff member sits with the child, giving him or her a cord to string their beads, and together they begin to tell the story.  Then,each time a child experiences a procedure or part of the treatment path, he or she adds a bead to the necklace reflecting the experience.  The bead program is an opportunity for children to tell their story using colorful beads as meaningful symbols of the many steps taken throughout the course of treatment.  The bead program also encourages children to speak about their feelings relating to their illness and treatment.  Courage bead give even the smallest children a voice as they deal with the pokes, pain, hair loss, and nausea while they journey through their treatment.  Each year LFA provides money toward Tu Nidito’s Courage Bead program to designate toward Leukemia patients.  Funding from LFA allows Tu Nidito to purchase the ongoing supplies necessary for the maintenance of the program, provide necklaces to children with a Leukemia diagnosis, and replenish beads that are low in number.  The financial assistance ensures that Tu Nidito always has the ability and supplies for children diagnosed with Leukemia to enroll in the Courage Bead program.   LFA provides emergent and non-emergent financial assistance to Tu Nidito families coping with a child’s leukemia diagnosis.  The monies have been used for various family needs.  Some examples include: assistance with mortagages, utility payments, and burial expenses.  Every so often there are certain milestones, special events, or circumstances within a family’s diagnosis / treatment process.  LFA provides discretionary funds to Tu Nidito to use for these unique needs.  If a child diagnosed with Leukemia has to celebrate a birthday in the hospital or if he / she completes therapy, these funds can be used to buy balloons, a birthday card, or other items to bring happiness to a family.  If a mother is staying in the hospital 24/7 with her child, the funds can be used to buy her a magazine and cup of coffee to lift her mood.  by having access to these discretionary funds, Tu Nidito is able to bring enjoyment, happiness, and other spirit lifting items to a family when thy are going through such a difficult time.                                       Sincerely, Amanda Marks  Tu Nidito Program Manager
• University Medical Center Tucson, AZ   Pediatric Oncology  Department Laura Hagerty LCSW Social Worker          To Whom it may Concern:  This letter serves to wholeheartedly support LFA and the amazing job they do for the pediatric oncology patients and their families that are cared for at UMC in Tucson.  As a pediatric oncology social worker I have worked closely with LFA for ten years.  When a child is diagnosed with Leukemia, the family faces many challenges and the assistance provided by LFA fulfills some very crucial needs.  This foundation provides financial assistance with rent, mortgage, utilities, and car expenses.  By supporting these needs, parents are able to focus on caring for their child without worrying about losing their homes or vehicles.   LFA also funds needs that improve the quality of life for our Young patients.  For instance, the foundation paid to redecorate the room of a patient that was going to be in a body cast for six weeks.  With LFA funds, her room was decorated to reflect the patient;s favorite place, Hawaii.  The foundation also paid for a refrigerator in her room, snacks, and a DVD player, all of which made her experience more comfortable.  The foundation has also paid specific needs such as tutoring, Christmas gift cards, child care, and funeral expenses.  Working with LFA is a pleasurable experience.  Their is no “red tape” which often occurs with other foundations; rather the process is simple and promptly.  There is a personal relationship between LFW and the pediatric oncology social worker that utilize the foundation’s resources.  It is clear that the foundation has sincere compassion for our patients.