True Stories of Our Mission Accomplished

Interview with the Binding Site’s Carl Roberts

CBS5 Cancer Caregiver Segment Feb 2016 from Arizona Myeloma Network.

True Stories & Testimonials of Mission Accomplished

Our mission is to promote collaboration, awareness, education and advocacy for improved treatment and quality of life, for multiple myeloma patients, their families and ALL cancer caregivers with special consideration to the underserved. We need your support to continue providing quality cancer education for FREE to the public. Cancer patients and ALL cancer caregivers shouldn’t have to pay to learn about their disease or how to care for a cancer patient. We know you agree. To learn more, donate, volunteer or sponsor an event contact Barbara Kavanagh, President, Founder and CEO at the address and number below. To donate online visit www.azmyelomanetwork.org

True Stories & Testimonials Through The Years

A newly diagnosed cancer patient Googled ‘cancer caregiver’ because she felt that her neighbor, who is also her best friend, and was planning to be her caregiver, didn’t know ‘how’ to help her. They both came to the seminar and were grateful to hear how other caregivers were dealing with this frightening disease. They also meet some wonderful community resources that were presenting that morning. They both left feeling that they had a ‘team’ to help and encourage them in their ‘cancer journey’.
Sept 2016 Cancer Caregivers Education seminar

Email: Tuesday, June 7, 2016 2:48 PM Dear Barbara and Jack; We are proud to help such a wonderful cause. We would like to thank all of you for the excellent work you do to help eliminate Myeloma and other forms of blood cancer. Your efforts and determination are never ending and we are most appreciative. Fondly, Bill and Elizabeth B.

Email: Saturday, May 14, 2016 1:45 PM I am thrilled for you and Jack and the AzMN team for all of the programming that is meeting the needs of the community…Friends tell me I look great. That’s nice, but looking behind the glasses is a whole different story. I just thank folks for the compliments. I guess all of us who are Survivors don’t always look like sickly cancer patients should. Again, thanks for your encouragement and all that you and the AzMN team do for us. Blessings, Marcia

Facebook: March 31 at 6:07pm ❤❤❤❤❤❤This organization gave me the support and knowledge I needed during one of the harder times in my life!!! Thank you for your support and all you do. ❤ – Mariott

Email: Tuesday, March 29, 2016 I know that the volunteers from our group, Cancer Survivors Circle of Strength, were very impressed with how smoothly everything ran, from registration to the sessions, to lunch and the afternoon break out sessions. In terms of comments I heard from others – “One of the best Myeloma Conferences I have attended” and “To hear this caliber of speakers, Dr. Kyle, Dr. Ken Anderson, Dr. Bart Barlogie and Dr. Joseph Mikhael, you would really need to attend an international conference. This speaks to the influence AZMN has in the Myeloma world” Ann B. 2016 Living with Myeloma Conference

Email: Thursday, March 17, 2016 9:18 PM Dear Barbara, my husband and I attended one of your conferences a few years ago shortly after my sister in Los Angeles had been diagnosed with multiple myeloma. It was the best thing we could have done. It was very informative and so well organized. We sat with a group of women during lunch whom shared their experiences with multiple myeloma and from them we learned who their doctors were. We passed this information on to my sister; she then made an appointment with one of those doctors (at Mayo) for a consultation. As a result she was more able to make a decision about her treatment. Thanks to you also, she continues to be doing well, feeling well. Just want to let you know we are happy that we attended your conference and wanted to share this with you. Sincerely, Doris

At first you couldn’t tell who was the ‘cancer caregiver’. The daughter’s husband has Myeloma and had a stem cell transplant in January. She said, “I have to work”. The room grew very still. Her mother told us “In January I left my husband home in Illinois and moved in with my daughter here (Arizona) to help care for my Son-in-Law and grandchildren”. Mother and daughter held hands the entire time never breaking hold. “I’ll stay here as long as they need me”, she said. “My dad visits us once a month”, the daughter added. Everyone applauded when they told their story…and, of course, I cried. – March 2016 Living with Myeloma breakout workshop: Caring for the Cancer Caregiver A new patient, who heard me (Barbara Kavanagh) speak on Fred Taylor’s Radio program, never attended a myeloma meeting. He was so excited at the conference to meet other patients and the wonderful faculty. He shared that he had felt very isolated since most people he knew had never heard of myeloma and now felt less anxious and more hopeful. Larry 2016 Living with Myeloma Conference

Dear Marcia (ICAN): ‘Thank God’ for you! You were my ‘1st and last hope’ to help Bonnie, who I met 3 years ago at our Myeloma Conference and had connected her to a myeloma specialist. When she contacted me about her ‘dual’ cancers and nowhere to turn, I thought of you…and you have truly given her a chance at ‘life’. And, without Joan’s (Koerber-Walker) AzBio meeting, I would not have known you or the important work that ICAN does. A truly beautiful example of collaboration on behalf of a cancer patient…Thank you and hearing from Bonnie today, gives me the strength I need to keep plugging along! Warm Regards, Barbara Kavanagh note of appreciation to Marcia Horn of ICAN – Feb 2016

Email: Sunday, February 7, 2016 12:37 PM Thank you Barbara for your all of your help. Because of your diligence in wanting to help me, you connected me with Marcia Horn, (ICAN) and she along with another contact named Melissa, have helped direct me toward an oncology office that was able to provide the exact care I need. I will be starting immunotherapy on Monday for my Metastatic Squamous Cell Cancer. I am hopeful I we will see good results both with the Squamous and with the Multiple Myeloma. Without you, this never would have happened. I am grateful from the bottom of my heart that you cared so much to try and help me. It was very much appreciated. Bonnie

Email: Thursday, January 21, 2016 8:50 AM Happy New Year from Shakira, my family and me. I just wish I lived closer to the Valley, so I can attend some of the caregiver conferences. You guys are doing an awesome job in helping open doors to people who are diagnosed with cancer. Because you sure did that for us, Shakira is doing wonderful, in her sophomore year! Marcella

A twin sister shares her long distance cancer caregiving story “I just got home from Utah on Sunday…He (the doctor) said her (twin sister’s) myeloma is very complicated because it shouldn’t have come back so quickly, especially after having a twin transplant, and she had such a rough time recovering after transplant. It’s all so overwhelming. How do we research what step to take after her 3 month oral chemo?” Tracie her daughter and husband Cancer Caregivers ReUnion Dec 2015

Email: Thursday, December 24, 2015 11:13 AM Barbara Kavanagh writes an appreciation email to Ruben A. Mesa, MD, FACP, MAYO “I thought that you would appreciate this photo of me with Tracie and her daughter, Karee, who came to ‘meet me’ and ‘thank me’ and ‘you’ for helping Tracie’s identical twin sister, Michelle, get to the ‘right’ myeloma doctor in Utah”. Dr. Mesa replied; “How wonderful to read this in the special holiday time. Wonderful to see that we were able to help in a small way, and help Barbara’s amazing mission in helping those afflicted. My best wishes for good health and a blessed Holiday Season.” “I agree! Thank you Barbara for being such a wonderful help to Tracie and her sister. We have enjoyed caring for Michelle and meeting such a wonderful family. Best wishes to you all, Mary Steinbach (NP from “Atanackovic Team” Utah)”. – Email string demonstrates the power of collaboration on patient health.

The challenges of long distance cancer caregiving, identifying local resources and tissue donation are highlighted here. “My father was diagnosed as nasopharyngeal cancer this August. He is at Hangzhou, China now and I just got a good message from there. The treatment of radiotherapy was successful. Next step, I plan to use the tissue sample to do a sequence that may help us to find out the mutation and as a guide for future. I work for Dr. Xiubao Chang (Mayo, Phoenix). We just sent a revise paper about multiple myeloma this morning. Merry Christmas and happy New Year!” Qinqin – Cancer Caregivers ReUnion Dec 2015

Email: Tuesday, November 17, 2015 8:50 AM “Michelle saw the specialist yesterday. The coordinator had gathered Michelle’s medical history, scans, blood work, transplant… Everything! All before she arrived for her appointment. I know it was because of you and your connections! My family is so grateful to you for your help! Thank heaven for you and all your work! You are a blessing! Tracie about her twin sister Michelle.

Email: Sunday, October 18, 2015 6:25 PM …Your work is such a value to this community it is hard to understand why donors would not be tearing the door down to make sure the work continues. Just keep me in the loop…Take care, and keep up the good work. Shapiro, Joan Rankin, Associate Director of UoA Medical Sciences

After my (Barbara Kavanagh) presentation a few people pulled me aside. Their words rang true and encourage me to do more. “What you are doing is needed ‘every where’. One caregiver touched me as she said, “Remember what they say on planes? Put your own oxygen mask of 1st.” Exactly! WoW!!! National Colon Cancer Alliance Conference, Cancer Caregivers Workshop Oct 2015

A man recently diagnosed with myeloma is under the impression that he had ‘no chance’ to survive. The man resigned himself to die. He and his family then attended one of our cancer education programs and learned first-hand that there is hope, survivorship and he and his family are not alone. His daughter commented at the end of the day “…you gave us hope.” Cancer Caregivers Seminar Banner MD Anderson Cancer Center April 2015

A deaf woman reached out to us a few days before a cancer caregiver’s seminar. She was so determined to come and learn of resources and how to handle her husband’s terminal cancer. We immediately hired two interpreters for the hearing impaired and debriefed faculty before the session started. Cancer Caregivers Seminar Banner MD Anderson Cancer Center April 2015

A middle aged Mexican man from Mexico City found AzMN on the Internet and flew the next night to arrive in time for the conference. His wife was diagnosed with Myeloma. His daughters didn’t come because they have trouble understanding English and are fearful of the disease, in denial and are distancing themselves. Barbara immediately took his hand and introduced the man to Dr. Munoz and Dr. Fonseca. The 2 Myeloma specialists who donated their time to speak at the conference spoke with the man at length in Spanish. Afterwards, we thanked the man for coming and hoped it was worth the long trip. He smiles shyly and held out a stack of myeloma booklets in Spanish! “I am blessed to be here and have learned so much” he said almost unbelievingly. “Now my daughters will read these, I can tell them what I learned and we have hope”. Living with Myeloma Conference March 2015

On a chilly morning in Feb 2014 a Father and Son were quietly sharing a light breakfast as they waited for the cancer caregiver’s seminar to begin. The heat of June 2014 brought us together again. This time there were 3: dad and two of his sons. Again they shared their experience. In Feb 2015 there were 4! We are grateful to the family for allowing us to share their strength and unity. The England family unites for loving wife and mom. Cancer Caregivers Seminar Cancer Treatment Centers of America Feb 2015

Two strangers coincidently sat at the same table. They shared why they came. The 1st said “…my husband has pancreatic cancer…” the 2nd women stirred by the remark replied quietly “so does mine.” They shared a comforting pause before continuing an engaging dialogue. Cancer Caregivers seminar CSCAz Jan 2015

Email: Sunday, July 08, 2012 10:00 AM Congratulations on another successful breast cancer awareness conference on the Navajo reservation in Fort Defiance! I wish I could have been there this year but I have already heard from so many about how good the conference was and how much bigger it’s getting every year. I know first hand, from having been there on the reservation with you doing the initial needs assessment, how important these conference series and breast cancer training programs are. I loved attending the conferences in the past to talk about my own breast cancer research I am conducting at TGen. The people were always very interested in what I had to say and wanted to hear more so I know how much they are benefiting from the programs that AzMN has implemented on The Rez. I have spoken to so many of the Navajo women at the previous conferences, who have told me personally that if it wasn’t for AzMN’s programs they wouldn’t have gained the knowledge of breast cancer that they have. This is huge and I am sure has helped save many lives by promoting screening for early detection. I have to say, I think the success comes from the unique nature of the program being truly about building trust (so important for the Navajos) and forming bonds with people. Trust me, I also know from my research the importance of working with the underserved to especially overcome all sorts of economic and cultural barriers. Keep up the good work and I look forward to attending and (hopefully) presenting again at next year’s conference. Please let me know how I could be of assistance to ensure the continued success of such wonderful and much needed programs. Bodour Salhia, PhD, Assistant Professor, Translational Genomics Research Institute

Written correspondence 7/11/12 I am writing to thank you for the opportunity you gave me and my wife Marianne to be involved in Dine Woman Helping Woman Program during our year living in Ft. Defiance. It was an astounding experiencing working with you and such a dedicated group of women in and around Fort Defiance and across the Navajo Reservation. The good that this group has accomplished in the three short years since its inception is incredible. I can say without any exaggeration that the Dine Woman Helping Woman made a positive impact in literally hundreds of lives across the Navajo Nation. Not just with breast cancer awareness, but with support for survivors, their families, friends and the medical community. In addition, this program has empowered the women who volunteer by proving to them that their efforts have a positive impact on the lives of every family in their communities. Charles Brumley Sc.D.

Email: Wed, Jul 25, 2012 at 7:34 PM …I met Mrs. Kavanagh at a Myeloma conference about three years ago and at the time I was diagnosed with Myeloma. I seem to be free of cancer cells now and at 92 I am involved in a new project. We live at Freedom Plaza at Thunderbird and Plaza Del Rio Blvd where I and some other artists have been able to get started an art gallery for showing our work as well as a place to work and a classroom. We are in the process of hanging our second show -all work by residents of the retirement home. Catherine Tyrrell