Page 1

Non-Profit Organization U.S. Postage

HEART TO HEART

PAID

Family Service Specialist Spotlight Having dedicated the past ten years to working with children who have serious illnesses, Rachel Pedinoff is excited to be a Family Service Specialists at HUGS. While obtaining her degree in Family Resources at the University of Hawaii, Rachel also completed her Child Life internship last May and is now a certified Child Life Specialist.

Honolulu, HI Permit No. 9613

Help, Understanding & Group Support

3636 Kilauea Avenue Honolulu, HI 96816

Volume 6

The HUGS mission is to improve the quality of life for families as they face the emotional and financial hardships of caring for a seriously ill child.

DID YOU KNOW? HUGS needs sponsors for its Moms’ and Dads’ Nights. $500 can create a fun evening for parents to focus on themselves and bond with their peers. Let us know if you would like to “host” an event.

To opt out of this mailer, please email info@hugslove.org or call 732-4846 2014 Spring Newsletter [ 5 ]

HUGSLove.org

igi was diagnosed with Acute Lymphoblastic Leukemia on August 26, 2009. The diagnosis caught us by surprise. Even in hindsight, there isn’t much that we can point to as being symptomatic of leukemia in the weeks leading up to her diagnosis. Certainly, we had no warning at the time. Gigi was three years old. In the morning, our older daughter, Bella, was getting ready for school. I was getting ready for work. And Gigi was eating breakfast. We had a newborn at home as well – a seven-week-old baby boy, CJ. In the middle of breakfast, Gigi clutched her head and screamed. We came running into the room to find her passed out. My wife, Laura, unable to rouse Gigi, scooped her up and headed for the door. As she reached the door, Gigi regained consciousness, but she remained lethargic and distant. My wife rushed Gigi to the emergency room at Kaiser Moanalua Medical Center. When I arrived at the hospital, Laura said that the doctor had thought that Gigi looked pale and had ordered “blood work.” I met the doctor a short time later. As he came in, he said that the blood work revealed Gigi had less than one quarter the normal volume of red blood. Whatever I had expected him to say, this wasn’t it. Stunned, I asked what could cause her to lose so much blood. The doctor replied that he could tell me a lot of “scary terms” and give me a couple of “terrible hours,” but it would be better just to wait. So we waited. When the doctor returned, he sat down with us. He leaned forward and said as gently as possible, “Your daughter has leukemia.” I started to stammer out questions. The doctor stopped me and replied, “I don’t have answers to anything you want to ask me.” We knew nothing about leukemia,

G

The family response to the new program has been very positive and interest is high. A HUGS child said, “I had so much fun. I want to go back again!”

HUGS siblings participating in a HUGS SibShops activity.

Spring 2014

My Daughter Gigi

Rachel has over six years of experience working with the Serious Fun Network and Paul Newman medical specialty camps across the U.S. She was a preschool teacher in California Rachel bonds with Sky Racoma, a HUGS child. and has also volunteered at Tripler Army Medical Center and Kapiolani Medical Center for Women and Children. Rachel is very happy to be working at HUGS and is eager to support HUGS families.

HUGS Sibshops Workshop Sibshops are workshops for HUGS siblings that provide a time and space for siblings to meet other siblings, have fun together, and share about the good and not-so-good parts of having a seriously ill sibling. They also get to learn about the services their siblings receive that they may not know or understand. These workshops were developed by HUGS staff who were trained in the national curriculum. HUGS is the only organization in Hawaii that offers this new program currently.

2014 Spring Newsletter [ 6 ]

HUGSLove.org

beyond that it was a kind of cancer. We were devastated. Gigi was admitted to the hospital right away. She had the first of many blood and platelet transfusions. The difference in her demeanor after her first blood transfusion was amazing. She went from being listless and pale to flushed with healthy color and full of energy and smiles. It was hard to imagine that anything was wrong with her! We were transferred to Kapiolani Medical Center for Women and Children later that night and admitted. Around midnight – about 17 hours since Gigi had passed out while eating breakfast—the pediatric oncologist on call came in to see us and confirmed Gigi’s diagnosis and described the disease and the treatment. And then he said, “If you have to be a kid with leukemia, this is the kind of leukemia you want to have.” At that moment, I had hope. So that was our day. It started out ordinary. By noon, the day took us as low as we’ve ever been. At midnight, we had hope. We spent nine days in the hospital. A short time after Gigi was released, we attended our first HUGS family dinner. In the tumult of noisy kids and parents talking in groups, we found that we were not alone. We found that other families had the same experience: a sick child and more time in the hospital than anyone should have to spend. The families were in all different places. They ranged from newly diagnosed as we were, to experienced in treatment, to completely done with treatment. Not all of the stories ended happily. But all of the stories touched us and helped us.

Gigi spent two and a half years in treatment. Throughout that time, we attended many family dinners. We’ve also been regulars at respite. Even when Gigi was on heavy chemo and had lost her hair, we always knew that HUGS was a safe place. She could be a kid. No one would stare. No one would wonder why she didn’t have hair. As Gigi moved through treatment and the end of treatment, we were glad to be one of the families who could provide support and encouragement for others who were just beginning their stories. HUGS has been, and remains, a very special place for our kids. When we told Gigi that she was almost done with her cancer treatment, the first thing she said was, “Can I still go to HUGS?” We were happy to tell her that the answer was yes! I became a HUGS Board Member after fellow Board Member Charlie Loomis, who knew our story, asked me whether I would serve on the board. The answer was easy. HUGS has been so special to our family. It’s a privilege to be able to give back in a small way. HUGS gave my family something that doctors couldn’t perform and money couldn’t buy. They gave us the emotional support we desperately needed to get through to the other end of this life-altering time. I ask on behalf of all HUGS families, to donate your time, money or other resources to help support all the wonderful programs it offers families caring for a seriously ill child. Mahalo!


Family Events

2014 BOARD OF DIRECTORS

Mahalos

Family events ruled the end of the year at HUGS! Families on Oahu and Maui were delighted with the holiday spirit.

HONORARY TRUSTEES June Jones Barbara Marumoto

Aloha,

BOARD OF DIRECTORS Jason Higa President David Kostecki Past President Patrick Klein President-Elect Chason Ishii Vice President Bill Tobin Vice-President JoAnn Lumsden Vice-President Frank Tokioka II Treasurer Catha Combs Secretary Darrick Ching

hile medical technology continues to advance to help save lives, HUGS still meets a critical need for patients and families that medicine will never be able to provide. HUGS applies a very traditional approach and supplies a very basic human need – one-on-one contact – through its numerous programs to provide many resources. HUGS alleviates the emotional and mental stress of the everyday burdens of living with a disease as “life goes on.”

W

Calvert G. Chipchase Rojo Herrera, Jr Greg Kikukawa Wenli Lin Charles Loomis Iris Matsumoto Carri Morgan

HUGS families feel this through hospital outreach, family events, support groups, monthly and emergency respites, airfare and food assistance. Unfortunately, we see the demand for our programs grow every year. Fortunately, our community continues to support HUGS in so many ways.

Yasuo Ogawa Terri Okada Sonja Swenson Rogers MEDICAL ADVISORS Desiree Medeiros, M.D. Darryl Glaser, M.D. Howard Klemmer, M.D. HUGS STAFF

This past year, HUGS helped more families than ever before. We have more than doubled our hospital outreach and even started a new program – SibShop. These workshops were developed after the success we have seen with our annual SibCamps. SibShops provide a space for siblings to meet others, have fun, laugh, share about the good and not-so-good parts of having a seriously ill sibling, and learn about the services their siblings receive.

Joan Naguwa Executive Director 3636 Kilauea Avenue Honolulu, HI 96816-2318 Tel: (808) 732-4846 Fax: (808) 732-4881 Email: HUGS@hugslove.org Website: www.hugslove.org

I want to thank our amazing Board of Directors, staff and volunteers who continually go above and beyond to support HUGS families. I also want to thank all of you in our community who give in so many ways to keep HUGS going for Hawaii families who need us. Mahalo,

AUW Designation #96590 CFC Designation #84333

Joan Naguwa HUGS Executive Director

2014 Spring Newsletter [ 2 ]

HUGSLove.org

Zippy’s Holiday Dinner bout 50 HUGS families enjoyed a holiday dinner at the Okinawan Cultural Center, generously sponsored by FCH Enterprises. Families were treated to a wonderful theme of “Race Around the World,” fun activities, crafts and even turkeys for each family. Mahalo to FCH Enterprises for a wonderful event for our families! Thanks also go out to Kamehameha Schools Children’s Choir, under the direction of Lynell Bright, IMUA for the lovely performances, and Suzette and Alan Arita for their magic shows.

A

Annual Oahu Christmas Party UGS’ Oahu Christmas party was the biggest yet, with 250 family members celebrating together at the Tenrikyo Cultural Center. Santa arrived and passed out Steven Nakao hosting the presents to every HUGS annual party. child. HUGS mom, Wendy Cockshell, stated that they “had such a wonderful time and didn’t stop smiling the entire night.” HUGS would like to send a big thank you to Hawaiian Airlines, Pacific Guardian Life, Ko‘olau

H

Ballrooms, Tikis, UPS, and Drill Team Hawaii for putting on such wonderful toy drives. More thanks go out to Hawaiian Airlines, Leilehua High School Band, 24/7 Dance Group, and the community of Tenrikyo Mission Headquarters of Hawaii for their amazing help setting up and running the Christmas party. Tenrikyo Mission Headquarters of Hawaii along with Steven Nakao have generously hosted – from cooking and food prep to set-up and clean-up – HUGS Christmas party for the past 11 years! Annual Maui Christmas Party ifteen Maui HUGS families celebrated the second annual Christmas party at the J. Walter Cameron Center in Wailuku with activities, games and crafts along with dinner for everyone. Santa also made an appearance to give each child presents. HUGS would like to send a very big thank you to “A Keikis Dream” and Darby Gill, who helped in countless ways, from finding a caterer to securing the location. Thanks also to Baldwin High School National Honor Society volunteers that came to help set up, clean up and help HUGS run the event.

2014 Spring Newsletter [ 3 ]

F

HUGSLove.org

From December 2013 to February 2014, HUGS received wonderful support from the following organizations and foundations:

Punahou School students participating in The Harry & Jeanette Weinberg Foundation Educating the Heart Program presents HUGS with a check.

$25,000 - $20,000 Na Lei Aloha Foundation $10,000 - $5,000 The Harry & Jeanette Weinberg Foundation Employee Giving Kokua Mai Employee Giving Program Sephora USA Locations Foundation NAIOP Hawaii The Cades Foundation The Harry & Jeanette Weinberg Foundation The Harry & Jeanette Weinberg Foundation Educating the Heart program

$5,000 - $2,500 Aloha United Way National Football League Foundation Hawaii Bowl Foundation HSMAI – Hawaii Chapter Williamson, Rindge & Hole Foundation James Haruji Tamura & Fumiko Tamura Foundation Leighton Lam Designs MY Investment Co. Leighton Lam Designs MY Investment Co. $2,500 - $1,000 NARPM – Oahu Chapter

Board Shorts - Rojelio Herrera ojelio “Rojo” Herrera has served on HUGS’ Board of Directors for the past three years. “I was drawn to HUGS because the HUGS Board Members were some of the most selfless leaders I’d ever met and they were genuinely focused on doing what’s best for HUGS

R

families—and after three years on the board, I can honestly say, they still are!” Rojo served in the Air Force for 30 years as a transport pilot, was an executive pastor and even ran for the Hawaii State Senate in 2012. He and his wife Debbie

have a blended family of 11 children (five of which are adopted), ranging in age from 4 to 31 years old. Mahalo to Rojo for his service to HUGS!

♥ HUGSLove.org 2013 2014 Fall Spring Newsletter Newsletter [ 2 ][ 4♥ ]www.hugslove.org


Family Events

2014 BOARD OF DIRECTORS

Mahalos

Family events ruled the end of the year at HUGS! Families on Oahu and Maui were delighted with the holiday spirit.

HONORARY TRUSTEES June Jones Barbara Marumoto

Aloha,

BOARD OF DIRECTORS Jason Higa President David Kostecki Past President Patrick Klein President-Elect Chason Ishii Vice President Bill Tobin Vice-President JoAnn Lumsden Vice-President Frank Tokioka II Treasurer Catha Combs Secretary Darrick Ching

hile medical technology continues to advance to help save lives, HUGS still meets a critical need for patients and families that medicine will never be able to provide. HUGS applies a very traditional approach and supplies a very basic human need – one-on-one contact – through its numerous programs to provide many resources. HUGS alleviates the emotional and mental stress of the everyday burdens of living with a disease as “life goes on.”

W

Calvert G. Chipchase Rojo Herrera, Jr Greg Kikukawa Wenli Lin Charles Loomis Iris Matsumoto Carri Morgan

HUGS families feel this through hospital outreach, family events, support groups, monthly and emergency respites, airfare and food assistance. Unfortunately, we see the demand for our programs grow every year. Fortunately, our community continues to support HUGS in so many ways.

Yasuo Ogawa Terri Okada Sonja Swenson Rogers MEDICAL ADVISORS Desiree Medeiros, M.D. Darryl Glaser, M.D. Howard Klemmer, M.D. HUGS STAFF

This past year, HUGS helped more families than ever before. We have more than doubled our hospital outreach and even started a new program – SibShop. These workshops were developed after the success we have seen with our annual SibCamps. SibShops provide a space for siblings to meet others, have fun, laugh, share about the good and not-so-good parts of having a seriously ill sibling, and learn about the services their siblings receive.

Joan Naguwa Executive Director 3636 Kilauea Avenue Honolulu, HI 96816-2318 Tel: (808) 732-4846 Fax: (808) 732-4881 Email: HUGS@hugslove.org Website: www.hugslove.org

I want to thank our amazing Board of Directors, staff and volunteers who continually go above and beyond to support HUGS families. I also want to thank all of you in our community who give in so many ways to keep HUGS going for Hawaii families who need us. Mahalo,

AUW Designation #96590 CFC Designation #84333

Joan Naguwa HUGS Executive Director

2014 Spring Newsletter [ 2 ]

HUGSLove.org

Zippy’s Holiday Dinner bout 50 HUGS families enjoyed a holiday dinner at the Okinawan Cultural Center, generously sponsored by FCH Enterprises. Families were treated to a wonderful theme of “Race Around the World,” fun activities, crafts and even turkeys for each family. Mahalo to FCH Enterprises for a wonderful event for our families! Thanks also go out to Kamehameha Schools Children’s Choir, under the direction of Lynell Bright, IMUA for the lovely performances, and Suzette and Alan Arita for their magic shows.

A

Annual Oahu Christmas Party UGS’ Oahu Christmas party was the biggest yet, with 250 family members celebrating together at the Tenrikyo Cultural Center. Santa arrived and passed out Steven Nakao hosting the presents to every HUGS annual party. child. HUGS mom, Wendy Cockshell, stated that they “had such a wonderful time and didn’t stop smiling the entire night.” HUGS would like to send a big thank you to Hawaiian Airlines, Pacific Guardian Life, Ko‘olau

H

Ballrooms, Tikis, UPS, and Drill Team Hawaii for putting on such wonderful toy drives. More thanks go out to Hawaiian Airlines, Leilehua High School Band, 24/7 Dance Group, and the community of Tenrikyo Mission Headquarters of Hawaii for their amazing help setting up and running the Christmas party. Tenrikyo Mission Headquarters of Hawaii along with Steven Nakao have generously hosted – from cooking and food prep to set-up and clean-up – HUGS Christmas party for the past 11 years! Annual Maui Christmas Party ifteen Maui HUGS families celebrated the second annual Christmas party at the J. Walter Cameron Center in Wailuku with activities, games and crafts along with dinner for everyone. Santa also made an appearance to give each child presents. HUGS would like to send a very big thank you to “A Keikis Dream” and Darby Gill, who helped in countless ways, from finding a caterer to securing the location. Thanks also to Baldwin High School National Honor Society volunteers that came to help set up, clean up and help HUGS run the event.

2014 Spring Newsletter [ 3 ]

F

HUGSLove.org

From December 2013 to February 2014, HUGS received wonderful support from the following organizations and foundations:

Punahou School students participating in The Harry & Jeanette Weinberg Foundation Educating the Heart Program presents HUGS with a check.

$25,000 - $20,000 Na Lei Aloha Foundation $10,000 - $5,000 The Harry & Jeanette Weinberg Foundation Employee Giving Kokua Mai Employee Giving Program Sephora USA Locations Foundation NAIOP Hawaii The Cades Foundation The Harry & Jeanette Weinberg Foundation The Harry & Jeanette Weinberg Foundation Educating the Heart program

$5,000 - $2,500 Aloha United Way National Football League Foundation Hawaii Bowl Foundation HSMAI – Hawaii Chapter Williamson, Rindge & Hole Foundation James Haruji Tamura & Fumiko Tamura Foundation Leighton Lam Designs MY Investment Co. Leighton Lam Designs MY Investment Co. $2,500 - $1,000 NARPM – Oahu Chapter

Board Shorts - Rojelio Herrera ojelio “Rojo” Herrera has served on HUGS’ Board of Directors for the past three years. “I was drawn to HUGS because the HUGS Board Members were some of the most selfless leaders I’d ever met and they were genuinely focused on doing what’s best for HUGS

R

families—and after three years on the board, I can honestly say, they still are!” Rojo served in the Air Force for 30 years as a transport pilot, was an executive pastor and even ran for the Hawaii State Senate in 2012. He and his wife Debbie

have a blended family of 11 children (five of which are adopted), ranging in age from 4 to 31 years old. Mahalo to Rojo for his service to HUGS!

♥ HUGSLove.org 2013 2014 Fall Spring Newsletter Newsletter [ 2 ][ 4♥ ]www.hugslove.org


Family Events

2014 BOARD OF DIRECTORS

Mahalos

Family events ruled the end of the year at HUGS! Families on Oahu and Maui were delighted with the holiday spirit.

HONORARY TRUSTEES June Jones Barbara Marumoto

Aloha,

BOARD OF DIRECTORS Jason Higa President David Kostecki Past President Patrick Klein President-Elect Chason Ishii Vice President Bill Tobin Vice-President JoAnn Lumsden Vice-President Frank Tokioka II Treasurer Catha Combs Secretary Darrick Ching

hile medical technology continues to advance to help save lives, HUGS still meets a critical need for patients and families that medicine will never be able to provide. HUGS applies a very traditional approach and supplies a very basic human need – one-on-one contact – through its numerous programs to provide many resources. HUGS alleviates the emotional and mental stress of the everyday burdens of living with a disease as “life goes on.”

W

Calvert G. Chipchase Rojo Herrera, Jr Greg Kikukawa Wenli Lin Charles Loomis Iris Matsumoto Carri Morgan

HUGS families feel this through hospital outreach, family events, support groups, monthly and emergency respites, airfare and food assistance. Unfortunately, we see the demand for our programs grow every year. Fortunately, our community continues to support HUGS in so many ways.

Yasuo Ogawa Terri Okada Sonja Swenson Rogers MEDICAL ADVISORS Desiree Medeiros, M.D. Darryl Glaser, M.D. Howard Klemmer, M.D. HUGS STAFF

This past year, HUGS helped more families than ever before. We have more than doubled our hospital outreach and even started a new program – SibShop. These workshops were developed after the success we have seen with our annual SibCamps. SibShops provide a space for siblings to meet others, have fun, laugh, share about the good and not-so-good parts of having a seriously ill sibling, and learn about the services their siblings receive.

Joan Naguwa Executive Director 3636 Kilauea Avenue Honolulu, HI 96816-2318 Tel: (808) 732-4846 Fax: (808) 732-4881 Email: HUGS@hugslove.org Website: www.hugslove.org

I want to thank our amazing Board of Directors, staff and volunteers who continually go above and beyond to support HUGS families. I also want to thank all of you in our community who give in so many ways to keep HUGS going for Hawaii families who need us. Mahalo,

AUW Designation #96590 CFC Designation #84333

Joan Naguwa HUGS Executive Director

2014 Spring Newsletter [ 2 ]

HUGSLove.org

Zippy’s Holiday Dinner bout 50 HUGS families enjoyed a holiday dinner at the Okinawan Cultural Center, generously sponsored by FCH Enterprises. Families were treated to a wonderful theme of “Race Around the World,” fun activities, crafts and even turkeys for each family. Mahalo to FCH Enterprises for a wonderful event for our families! Thanks also go out to Kamehameha Schools Children’s Choir, under the direction of Lynell Bright, IMUA for the lovely performances, and Suzette and Alan Arita for their magic shows.

A

Annual Oahu Christmas Party UGS’ Oahu Christmas party was the biggest yet, with 250 family members celebrating together at the Tenrikyo Cultural Center. Santa arrived and passed out Steven Nakao hosting the presents to every HUGS annual party. child. HUGS mom, Wendy Cockshell, stated that they “had such a wonderful time and didn’t stop smiling the entire night.” HUGS would like to send a big thank you to Hawaiian Airlines, Pacific Guardian Life, Ko‘olau

H

Ballrooms, Tikis, UPS, and Drill Team Hawaii for putting on such wonderful toy drives. More thanks go out to Hawaiian Airlines, Leilehua High School Band, 24/7 Dance Group, and the community of Tenrikyo Mission Headquarters of Hawaii for their amazing help setting up and running the Christmas party. Tenrikyo Mission Headquarters of Hawaii along with Steven Nakao have generously hosted – from cooking and food prep to set-up and clean-up – HUGS Christmas party for the past 11 years! Annual Maui Christmas Party ifteen Maui HUGS families celebrated the second annual Christmas party at the J. Walter Cameron Center in Wailuku with activities, games and crafts along with dinner for everyone. Santa also made an appearance to give each child presents. HUGS would like to send a very big thank you to “A Keikis Dream” and Darby Gill, who helped in countless ways, from finding a caterer to securing the location. Thanks also to Baldwin High School National Honor Society volunteers that came to help set up, clean up and help HUGS run the event.

2014 Spring Newsletter [ 3 ]

F

HUGSLove.org

From December 2013 to February 2014, HUGS received wonderful support from the following organizations and foundations:

Punahou School students participating in The Harry & Jeanette Weinberg Foundation Educating the Heart Program presents HUGS with a check.

$25,000 - $20,000 Na Lei Aloha Foundation $10,000 - $5,000 The Harry & Jeanette Weinberg Foundation Employee Giving Kokua Mai Employee Giving Program Sephora USA Locations Foundation NAIOP Hawaii The Cades Foundation The Harry & Jeanette Weinberg Foundation The Harry & Jeanette Weinberg Foundation Educating the Heart program

$5,000 - $2,500 Aloha United Way National Football League Foundation Hawaii Bowl Foundation HSMAI – Hawaii Chapter Williamson, Rindge & Hole Foundation James Haruji Tamura & Fumiko Tamura Foundation Leighton Lam Designs MY Investment Co. Leighton Lam Designs MY Investment Co. $2,500 - $1,000 NARPM – Oahu Chapter

Board Shorts - Rojelio Herrera ojelio “Rojo” Herrera has served on HUGS’ Board of Directors for the past three years. “I was drawn to HUGS because the HUGS Board Members were some of the most selfless leaders I’d ever met and they were genuinely focused on doing what’s best for HUGS

R

families—and after three years on the board, I can honestly say, they still are!” Rojo served in the Air Force for 30 years as a transport pilot, was an executive pastor and even ran for the Hawaii State Senate in 2012. He and his wife Debbie

have a blended family of 11 children (five of which are adopted), ranging in age from 4 to 31 years old. Mahalo to Rojo for his service to HUGS!

♥ HUGSLove.org 2013 2014 Fall Spring Newsletter Newsletter [ 2 ][ 4♥ ]www.hugslove.org


Non-Profit Organization U.S. Postage

HEART TO HEART

PAID

Family Service Specialist Spotlight Having dedicated the past ten years to working with children who have serious illnesses, Rachel Pedinoff is excited to be a Family Service Specialists at HUGS. While obtaining her degree in Family Resources at the University of Hawaii, Rachel also completed her Child Life internship last May and is now a certified Child Life Specialist.

Honolulu, HI Permit No. 9613

Help, Understanding & Group Support

3636 Kilauea Avenue Honolulu, HI 96816

Volume 6

The HUGS mission is to improve the quality of life for families as they face the emotional and financial hardships of caring for a seriously ill child.

DID YOU KNOW? HUGS needs sponsors for its Moms’ and Dads’ Nights. $500 can create a fun evening for parents to focus on themselves and bond with their peers. Let us know if you would like to “host” an event.

To opt out of this mailer, please email info@hugslove.org or call 732-4846 2014 Spring Newsletter [ 5 ]

HUGSLove.org

igi was diagnosed with Acute Lymphoblastic Leukemia on August 26, 2009. The diagnosis caught us by surprise. Even in hindsight, there isn’t much that we can point to as being symptomatic of leukemia in the weeks leading up to her diagnosis. Certainly, we had no warning at the time. Gigi was three years old. In the morning, our older daughter, Bella, was getting ready for school. I was getting ready for work. And Gigi was eating breakfast. We had a newborn at home as well – a seven-week-old baby boy, CJ. In the middle of breakfast, Gigi clutched her head and screamed. We came running into the room to find her passed out. My wife, Laura, unable to rouse Gigi, scooped her up and headed for the door. As she reached the door, Gigi regained consciousness, but she remained lethargic and distant. My wife rushed Gigi to the emergency room at Kaiser Moanalua Medical Center. When I arrived at the hospital, Laura said that the doctor had thought that Gigi looked pale and had ordered “blood work.” I met the doctor a short time later. As he came in, he said that the blood work revealed Gigi had less than one quarter the normal volume of red blood. Whatever I had expected him to say, this wasn’t it. Stunned, I asked what could cause her to lose so much blood. The doctor replied that he could tell me a lot of “scary terms” and give me a couple of “terrible hours,” but it would be better just to wait. So we waited. When the doctor returned, he sat down with us. He leaned forward and said as gently as possible, “Your daughter has leukemia.” I started to stammer out questions. The doctor stopped me and replied, “I don’t have answers to anything you want to ask me.” We knew nothing about leukemia,

G

The family response to the new program has been very positive and interest is high. A HUGS child said, “I had so much fun. I want to go back again!”

HUGS siblings participating in a HUGS SibShops activity.

Spring 2014

My Daughter Gigi

Rachel has over six years of experience working with the Serious Fun Network and Paul Newman medical specialty camps across the U.S. She was a preschool teacher in California Rachel bonds with Sky Racoma, a HUGS child. and has also volunteered at Tripler Army Medical Center and Kapiolani Medical Center for Women and Children. Rachel is very happy to be working at HUGS and is eager to support HUGS families.

HUGS Sibshops Workshop Sibshops are workshops for HUGS siblings that provide a time and space for siblings to meet other siblings, have fun together, and share about the good and not-so-good parts of having a seriously ill sibling. They also get to learn about the services their siblings receive that they may not know or understand. These workshops were developed by HUGS staff who were trained in the national curriculum. HUGS is the only organization in Hawaii that offers this new program currently.

2014 Spring Newsletter [ 6 ]

HUGSLove.org

beyond that it was a kind of cancer. We were devastated. Gigi was admitted to the hospital right away. She had the first of many blood and platelet transfusions. The difference in her demeanor after her first blood transfusion was amazing. She went from being listless and pale to flushed with healthy color and full of energy and smiles. It was hard to imagine that anything was wrong with her! We were transferred to Kapiolani Medical Center for Women and Children later that night and admitted. Around midnight – about 17 hours since Gigi had passed out while eating breakfast—the pediatric oncologist on call came in to see us and confirmed Gigi’s diagnosis and described the disease and the treatment. And then he said, “If you have to be a kid with leukemia, this is the kind of leukemia you want to have.” At that moment, I had hope. So that was our day. It started out ordinary. By noon, the day took us as low as we’ve ever been. At midnight, we had hope. We spent nine days in the hospital. A short time after Gigi was released, we attended our first HUGS family dinner. In the tumult of noisy kids and parents talking in groups, we found that we were not alone. We found that other families had the same experience: a sick child and more time in the hospital than anyone should have to spend. The families were in all different places. They ranged from newly diagnosed as we were, to experienced in treatment, to completely done with treatment. Not all of the stories ended happily. But all of the stories touched us and helped us.

Gigi spent two and a half years in treatment. Throughout that time, we attended many family dinners. We’ve also been regulars at respite. Even when Gigi was on heavy chemo and had lost her hair, we always knew that HUGS was a safe place. She could be a kid. No one would stare. No one would wonder why she didn’t have hair. As Gigi moved through treatment and the end of treatment, we were glad to be one of the families who could provide support and encouragement for others who were just beginning their stories. HUGS has been, and remains, a very special place for our kids. When we told Gigi that she was almost done with her cancer treatment, the first thing she said was, “Can I still go to HUGS?” We were happy to tell her that the answer was yes! I became a HUGS Board Member after fellow Board Member Charlie Loomis, who knew our story, asked me whether I would serve on the board. The answer was easy. HUGS has been so special to our family. It’s a privilege to be able to give back in a small way. HUGS gave my family something that doctors couldn’t perform and money couldn’t buy. They gave us the emotional support we desperately needed to get through to the other end of this life-altering time. I ask on behalf of all HUGS families, to donate your time, money or other resources to help support all the wonderful programs it offers families caring for a seriously ill child. Mahalo!


Non-Profit Organization U.S. Postage

HEART TO HEART

PAID

Family Service Specialist Spotlight Having dedicated the past ten years to working with children who have serious illnesses, Rachel Pedinoff is excited to be a Family Service Specialists at HUGS. While obtaining her degree in Family Resources at the University of Hawaii, Rachel also completed her Child Life internship last May and is now a certified Child Life Specialist.

Honolulu, HI Permit No. 9613

Help, Understanding & Group Support

3636 Kilauea Avenue Honolulu, HI 96816

Volume 6

The HUGS mission is to improve the quality of life for families as they face the emotional and financial hardships of caring for a seriously ill child.

DID YOU KNOW? HUGS needs sponsors for its Moms’ and Dads’ Nights. $500 can create a fun evening for parents to focus on themselves and bond with their peers. Let us know if you would like to “host” an event.

To opt out of this mailer, please email info@hugslove.org or call 732-4846 2014 Spring Newsletter [ 5 ]

HUGSLove.org

igi was diagnosed with Acute Lymphoblastic Leukemia on August 26, 2009. The diagnosis caught us by surprise. Even in hindsight, there isn’t much that we can point to as being symptomatic of leukemia in the weeks leading up to her diagnosis. Certainly, we had no warning at the time. Gigi was three years old. In the morning, our older daughter, Bella, was getting ready for school. I was getting ready for work. And Gigi was eating breakfast. We had a newborn at home as well – a seven-week-old baby boy, CJ. In the middle of breakfast, Gigi clutched her head and screamed. We came running into the room to find her passed out. My wife, Laura, unable to rouse Gigi, scooped her up and headed for the door. As she reached the door, Gigi regained consciousness, but she remained lethargic and distant. My wife rushed Gigi to the emergency room at Kaiser Moanalua Medical Center. When I arrived at the hospital, Laura said that the doctor had thought that Gigi looked pale and had ordered “blood work.” I met the doctor a short time later. As he came in, he said that the blood work revealed Gigi had less than one quarter the normal volume of red blood. Whatever I had expected him to say, this wasn’t it. Stunned, I asked what could cause her to lose so much blood. The doctor replied that he could tell me a lot of “scary terms” and give me a couple of “terrible hours,” but it would be better just to wait. So we waited. When the doctor returned, he sat down with us. He leaned forward and said as gently as possible, “Your daughter has leukemia.” I started to stammer out questions. The doctor stopped me and replied, “I don’t have answers to anything you want to ask me.” We knew nothing about leukemia,

G

The family response to the new program has been very positive and interest is high. A HUGS child said, “I had so much fun. I want to go back again!”

HUGS siblings participating in a HUGS SibShops activity.

Spring 2014

My Daughter Gigi

Rachel has over six years of experience working with the Serious Fun Network and Paul Newman medical specialty camps across the U.S. She was a preschool teacher in California Rachel bonds with Sky Racoma, a HUGS child. and has also volunteered at Tripler Army Medical Center and Kapiolani Medical Center for Women and Children. Rachel is very happy to be working at HUGS and is eager to support HUGS families.

HUGS Sibshops Workshop Sibshops are workshops for HUGS siblings that provide a time and space for siblings to meet other siblings, have fun together, and share about the good and not-so-good parts of having a seriously ill sibling. They also get to learn about the services their siblings receive that they may not know or understand. These workshops were developed by HUGS staff who were trained in the national curriculum. HUGS is the only organization in Hawaii that offers this new program currently.

2014 Spring Newsletter [ 6 ]

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beyond that it was a kind of cancer. We were devastated. Gigi was admitted to the hospital right away. She had the first of many blood and platelet transfusions. The difference in her demeanor after her first blood transfusion was amazing. She went from being listless and pale to flushed with healthy color and full of energy and smiles. It was hard to imagine that anything was wrong with her! We were transferred to Kapiolani Medical Center for Women and Children later that night and admitted. Around midnight – about 17 hours since Gigi had passed out while eating breakfast—the pediatric oncologist on call came in to see us and confirmed Gigi’s diagnosis and described the disease and the treatment. And then he said, “If you have to be a kid with leukemia, this is the kind of leukemia you want to have.” At that moment, I had hope. So that was our day. It started out ordinary. By noon, the day took us as low as we’ve ever been. At midnight, we had hope. We spent nine days in the hospital. A short time after Gigi was released, we attended our first HUGS family dinner. In the tumult of noisy kids and parents talking in groups, we found that we were not alone. We found that other families had the same experience: a sick child and more time in the hospital than anyone should have to spend. The families were in all different places. They ranged from newly diagnosed as we were, to experienced in treatment, to completely done with treatment. Not all of the stories ended happily. But all of the stories touched us and helped us.

Gigi spent two and a half years in treatment. Throughout that time, we attended many family dinners. We’ve also been regulars at respite. Even when Gigi was on heavy chemo and had lost her hair, we always knew that HUGS was a safe place. She could be a kid. No one would stare. No one would wonder why she didn’t have hair. As Gigi moved through treatment and the end of treatment, we were glad to be one of the families who could provide support and encouragement for others who were just beginning their stories. HUGS has been, and remains, a very special place for our kids. When we told Gigi that she was almost done with her cancer treatment, the first thing she said was, “Can I still go to HUGS?” We were happy to tell her that the answer was yes! I became a HUGS Board Member after fellow Board Member Charlie Loomis, who knew our story, asked me whether I would serve on the board. The answer was easy. HUGS has been so special to our family. It’s a privilege to be able to give back in a small way. HUGS gave my family something that doctors couldn’t perform and money couldn’t buy. They gave us the emotional support we desperately needed to get through to the other end of this life-altering time. I ask on behalf of all HUGS families, to donate your time, money or other resources to help support all the wonderful programs it offers families caring for a seriously ill child. Mahalo!

HUGS - Heart to Heart Spring 2014  
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