Book Review: When Your Child is Sick, A Guide to Navigating the Practical and Emotional Challenges of Caring for a Child Who is Very Ill

Book Review: “When Your Child is Sick, A Guide to Navigating the Practical and Emotional Challenges of Caring for a Child Who is Very Ill” Written by Joanna Breyer, PhD

I had the great pleasure of meeting Joanna Breyer last month as she toured Family House.  She was in town as she put it, “to see that this book of hers landed in the hands of the people who would benefit from it the most.”  Ms. Breyer is a psychologist who has worked with children with cancer and their families for over 25 years at Dana-Farber Cancer Institute and Boston Children’s Hospital. This book is meant to serve as a comprehensive guide for families navigating the most uncertain and difficult circumstances of having a child diagnosed with a life-threatening illness.  She informed me that she intends for the book to be used as a resource guide; as different parts of the book will be relevant to families at different times. The book is presented in three sections.  Part I is on treatment, which includes everything from entering into the medical world, to coping techniques, being a parent to your other children, medications, to stem cell transplants and sibling as donors.  Part II discusses survivorship.  She writes about surviving Cancer, dealing with the emotional effects of a serious childhood illness, healthy living, and transitioning to adult medical care.  In a very compassionate tone, Part III addresses the topic of when your child’s treatment does not work.

Ms. Breyer’s decades of experience and dedication to the families and children she has worked with throughout her career is felt on every page.  It just might be one of those books that finds a home on your shelf to refer to as you manage the multiple practical and emotional complexities of this unimaginably difficult time in your life.  I highly recommend it.

This book review was written by Family House Social Worker Elan Slavin, MSW, as a resource we recommend. It can be purchased here:  https://smile.amazon.com/gp/product/0147517583/ref=dbs_a_def_rwt_bibl_vppi_i0

Self-Care Kit

Self-Care Kit

When you’re going through a stressful time, it can be helpful to have care and comfort items at the ready, so you don’t have to go far to find some relief. Here are some suggestions for what might go into a self-care kit for yourself or someone you love:

Tissues

Mop up some tears or keep your germs to yourself – it’s the worst to need a tissue and not have one handy. Bonus: sharing with someone else who really needs one.

Hand Sanitizer

Especially during cold-and-flu season, it’s a must to have hand sanitizer available. If you’re immune-compromised, the last thing you need is to be exposed to other people’s germs. And if you’re sick, you don’t want to spread them around.

Lotion

Lots of hand washing, wintry weather, and even many medicines can leave your skin dry. Keep a small bottle of lotion handy (get it? Handy?) for when you need it.

 Snacks

Sometimes things feel overwhelming when you really just need a little food. Keep healthy, non-perishable snacks close by, such as almonds, crackers, or a peanut butter packet. Maybe keep a tea bag or some instant hot chocolate, too, for when you need something warm and soothing.

Inspirational Quotes

Keep some wise words handy, or ask your friends to write you some love notes to read when you’re feeling down.

Stuffed Animal or Comfort Item

It doesn’t matter how old you are, sometimes something soft and cuddly can make a world of difference. Whether it’s a stuffed animal, a soft blanket, or your favorite hoodie – reaching for a familiar comfort can help you get through a tough moment.

Headphones

Music is one of the most therapeutic things out there, because you can find the groove that best fits your mood. Keep a pair of headphones handy for when you need to tune out the outside world.

A Notebook

Expressing your thoughts and feelings on paper can be a huge relief! Or, it can be very helpful to write things down so you don’t forget – what the doctor said, your next appointment, or even your shopping list.

Coloring Book

Adult coloring books are all the rage, and we remember why we loved to color as kids! If you haven’t tried it lately, we highly recommend it.

Manicure Kit

Need some down time? Take a few minutes to paint your finger or toenails. Not only will you feel a little prettier, but it’ll be a good distraction and excuse to chill out while you wait for the polish to dry.

Fuzzy Socks

Pick up some cute socks to wear instead of the ugly ones they give you at the hospital. Why not add some fun flair to your outfit?

Favorite Movies

If you don’t know where to start for some good pick-me-up screen time, ask around. Chances are, your friends can recommend a movie or TV series that will get you smiling.

Pictures

Keep your favorite people and places close at hand with some of your favorite photos! Tip: If you can keep them in your phone’s photo library, you won’t have to worry about a wifi connection to see your favorite faces.

What's in your comfort kit?

Canine Companions for Independence Volunteers

Canine Companions for Independence is a nonprofit that raises and trains service dogs to accompany individuals who need them. Part of that training is a socialization process for the puppies, which includes exposing them to many different environments, including meeting new people and being in large crowds. CCI volunteers and their puppies have been volunteering at Family House for several months, and volunteer Scott Hartman shared his story with us:


I am a symphony musician and a dog lover!  I do a lot of volunteer work mainly with non-profit musical and educational organizations. The first few weeks of raising a CCI puppy can be tough, as an 8 week old puppy is a baby and you lose a lot of sleep at first, but I love it. You make a lot of friends and see a lot of strangers smiling when you walk around with a dog. Imagine walking around with a cute puppy with a cape!

Our first puppy was Wakari, eight weeks old - raising her was incredible! I've had dogs for decades, but never one so trainable, so gentle. She went everywhere with us - museums, nice restaurants, the emergency room, every trip we went on, and to many Giants games. After she graduated from the CCI program, she was sent to meet her new, permanent owner, through a children’s hospital in Washington state.

Clarence III was our next puppy - a huge puppy with the sweetest spirit. At Clarence’s graduation ceremony, we met his future family, which included a 15-year-old boy with autism and Down Syndrome who had never had a friend. Whatever fun I’d had with Clarence was nothing compared to what he was going to do for my new friend Riley!

At first, I thought being a CCI volunteer Puppy Raiser was all about me and the joy I got from having a puppy (which is considerable), but after seeing how the puppies improve people’s lives, I realize that I am a tiny part of it. The real joy is realizing how much happiness and freedom the puppies give other people. The rewards greatly outweigh the time and effort put into it, and the time and efforts are joy in themselves.

Canine Companions for Independence is a great organization - every contact and experience we have had with CCI has been top notch, from the people at their incredible facility in Santa Rosa to the trainer we work with locally. There is a great deal of help and support from other raisers and the CCI community. I spent only a few hours at Family House but I could tell from the minute I walked in that it was full of caring individuals and the atmosphere was professional but very human and warm.

“Books for Sick Kids” Fundraiser

Thank you to Tise, Toyin, and Toyo Obembe for hosting a great book drive for Family House families! By reaching out to their community, they raised $550 which, in partnership with the Scholastic Literacy Program, was used to purchase 338 books for Family House. We asked their father, Olu, how it came to be:

“My kids were challenged last year by my wife to think of something they can do to help others.  Last year’s effort was a teddies for sick kids drive. They built ‘build-a-bear’ bears for kids at Benioff Children’s Hospital in Oakland. This year, I shared with them what Family House Director of Volunteer Programs Karen Banks had shared when she spoke to my corporate team at Salesforce. I was inspired. My kids were excited. That’s how it started. You can help others with just a little effort.”

Thank you for caring about our community!

Learn how you can get involved: familyhouseinc.org/donate

Family House Family Stories: Gina’s Boys

Family House Family Stories: Sharing the brave and inspiring stories of families of children with cancer and other life-threatening illnesses. This story features Gina, mom to four boys, two of whom have a rare genetic disease that requires treatment at the UCSF Benioff Children’s Hospital. Hear from Gina about the positive impact that Family House has had on their family, and the ways that they try to pay it forward.

Family Stories: Tauriel’s Family

Family House Family Stories: Sharing the brave and inspiring stories of families of children with cancer and other life-threatening illnesses. This story features Tauriel G and her family, from Whiteriver, Arizona - they  have been staying at Family House in San Francisco for over a year while Tauriel undergoes treatment at the UCSF Benioff Children's Hospital. Hear how Family House helped keep their family together in a time of crisis.

Rockstar Volunteers: WorkLink California

WorkLink volunteers shine at Family House - due to their incredible work-ethic and dedication to serving our families.  Volunteers from WorkLink have aided Family House for nearly a decade, helping us 
to keep our house clean, tidy, and orderly.  WorkLink volunteers are contagiously positive and kind to each person they encounter, 
especially to our families. 

WorkLink is a transition and direct service provider that helps adults with disabilities find employment and other means of service.  Since 2008, WorkLink has contributed over 7,000 hours of service to Family House at both our original Inner Sunset locations, and now in Mission Bay.

WorkLink volunteers are devoted to making every visit count! They are always professional, encouraging, and committed to the work they perform. From disinfecting our play areas to tidying the kitchens, we can continually depend on the amazing volunteers from WorkLink.  We thank each volunteer for the many years serving Family House families.

Staff Spotlight: Monique Ngo

Where did you grow up?
San Jose

Position at Family House:      

Hospitality Services Coordinator

Reason for working at Family House:

I used to volunteer for Family House when I was an undergraduate student at the University of San Francisco, and remembered how much I loved working with the staff and how great it was to be a part of something that provided so much support and empathy to families with children with cancer or other serious illnesses. Considering my mom has been sick for a majority of my life (kidney failure, then cancer), I know how an illness can affect not only the one who is sick, but the entire family as well. I wanted to be a part of the staff at Family House in order to provide families the support and love they need in order to hopefully lessen some of the stress they may be facing.

  

Favorite thing to do in San Francisco: 

I love trying new restaurants around the city! There are just so many different places I want to go and try that my list just keeps getting longer! I also love exploring around the city. There are a lot of little gems around the city and whenever I have free time I like to go adventure to find them.

What makes you special?
I always have colorful hair! I enjoy dyeing my hair different colors and I have a tendency to change it up often. Having colorful hair just makes me feel happy and so far it seems to put a smile on other peoples faces, too, so that makes me even more happy!

What's the story behind the photo?
This photo was taken on my birthday this year when I was at the Academy of Sciences with my partner. I love being around plants and nature so when I saw this wall of plants it just made me happy so I wanted a picture with it. So my partner started to take pictures of me standing in front of it but instead of counting off or telling me he was going to start to take a picture, he just kept snapping picture after picture, during which I kept moving. This is one of the photos that resulted from the “photoshoot” my partner decided to have of me standing in front of a wall of plants. My friends and I also used to joke how I could just blend in with trees and plants because my hair was so green during this little “photoshoot” -  I kept joking how my hair was a part of the plants!

Cabernet for Connoisseurs 2017

The 22nd Annual Cabernet for Connoisseurs event is Family House’s biggest annual fundraiser. This year, over 350 guests joined 59 pouring vintners to have fun and raise money for Family House! Thank you to everyone who made this memorable night possible - all of the attendees, the donors, the volunteers, and naturally, all of the vintners! We are so lucky to have such an incredibly generous, supportive community, and some of the best wine in the world right in our own back yard. Lots more photos at facebook.com/FamilyHouseSanFrancisco

Train’s Pat Monahan Visits Family House

Thank you to Train's Pat Monahan for visiting Family House on the heels of your “Train Does Led Zeppelin II” tour! We love that you brought your kids to meet our kids (and make all the moms blush!). Thank you for taking such an interest in everyone here, taking time to listen to their stories, and above all, for caring. We appreciate all that you do for us and can never say Thank You enough! See more at https://www.facebook.com/148667470276/photos/?tab=album&album_id=10156951482930277

Family House Family Stories: Moua's Memories

Watch the latest Family House Family Stories video: Moua’s Memories 

Learn more about the incredible families we serve at http://www.familyhouseinc.org/about-us.html

5 Tips for Supporting the Caregiver in your Life

“5 Tips for Supporting the Caregiver in your Life”
by Sona Mehring, the founder of CaringBridge

1 Stronger Together; Build a Support Team. Well-meaning friends and relatives may say: “God doesn’t give you more than you can handle.” But that doesn’t mean you have to handle it alone. Caregiving can be relentless, exhausting and overwhelming. For family caregivers like myself, there can be a sense of loneliness and isolation, which can affect your overall health and well-being. As a friend of a family caregiver, take the first step of building a short list of close family or friends who are able to help in anyway. 

2. Let It Go. How can you encourage caregivers to pace themselves to remain emotionally and physically strong? What helped me “let go” was a family member who took that short list from Step 1 and divvyed up daily tasks and errands by creating a schedule. Loved ones consistently delivered meals, purchased groceries, helped with yard and house work, attended doctor’s appointments, and much more. I found it helpful to ask friends and to use some of the many resources available online to help navigate the complexities of insurance, social services, medication and financial management.

3. Step Away and Find Humor. Regardless of how strong and positive caregivers try to be, daily life involves sadness and suffering. Friends would encourage me to step away and find the humor in life’s struggles. Whether it was time spent with a group of friends or watching a funny TV show or movie. Laughter can truly be the best medicine. Laughter can also help: reduce pain, drop levels of stress hormones, and release endorphins which can bring positive changes to your mindset.

4. Take Focus Off the Physical. Remind the caregiver to focus on more than just physical care. A typical day is focused on physical needs and limitations, which can be degrading and frustrating for both the loved one and caregiver. I connected with my mother (the patient) by making our time together as enjoyable as possible. This could be anything from sharing stories, trying a new hobby or finding a new favorite TV show to watch. Caring for my mother was one of the most rewarding things I have done in my life, but it was also the hardest.

5. Share with Those Who Care. Encourage caregivers to openly share and communicate hopes and fears, joys and sorrows, and everything in between. Putting words around the things you’re experiencing and feeling will not be easy, but it will be cathartic. Even if you don’t consider yourself a writer, take a little time each week to record your feelings in a journal or through a CaringBridge website. I started my mother’s CaringBridge website when she was first diagnosed in 1998 and again in 2001 when she was stricken with liver cancer. The advantage to capturing your story in this way is the ability to garner strength and support from those who love you and want to help. I also have a permanent record of my time with my mother that captured my thoughts and feelings, but also the love people had for my her.

Self-Care: Questions to Ask Before Giving Up

November is National Family Caregivers Month! Don't forget to take care of YOURSELF, too!

Family House Family Stories: Savannah's Story

Watch the latest Family House Family Stories video: Savannah's Story:

And learn more about this amazing little girl at: https://www.facebook.com/prayersforsavannahhope

Nancy & Stephen Grand Family House Construction Time Lapse

Watch the latest Time Lapse video of the construction of the Nancy & Stephen Grand Family House at Mission Bay! This video starts at pre-construction in November 2014 and goes through the end of February 2015. To learn more about the future of Family House, visit http://www.familyhouseinc.org/mission-bay.html

Mighty Mason – Looking Back

Mason H and his family stayed at Family House after his initial diagnosis of Crohn’s Disease, an autoimmune disease. Family House talked with Mason’s mother, Sara:

FH: What were your first memories of learning that Mason had Crohn's Disease? 

Sara: His initial diagnosis was Crohn's, but then the immunology department at UCSF did some testing on him, and they told us there's a very rare chance that he has a genetic disease called IL-10 Receptor Deficiency. He's the tenth noted case in the entire world. That's how rare it was, but the disease mimicked Crohn's. His GI tract was attacking itself basically. He was always in a lot of pain. 

It was a long road just to get to that diagnosis. Before we just thought this is something that he was going to have to live with and deal with. Then they told us that there was a cure, and the bone marrow transplant should take care of it. It was incredibly frightening, but we also saw a little light at the end of the tunnel.

 

FH: What was the most challenging aspect of those early days?

Sara: As a parent, the one thing that you want to do for your children is to protect them and help them, and there was just nothing we could do. We couldn't fix the problem ourselves, and that was just the most frustrating thing. Not knowing exactly what it was, and just watching him in pain all the time. It was incredibly hard. It tested our faith very, very much. 

FH: How did you first discover Family House?

Sara: One of the social workers in the hospital had mentioned it, that Family House specifically helps kids who are immune-compromised, which was what we’d need post-bone marrow transplant.

It was nice to see a place that had all of the comforts of home. Everybody was really helpful, and friendly, and very accommodating, especially Paul in the front office – he was just so warm and friendly. I remember when we were waiting outside and Mason was really, really sick. Paul came out and was really helpful and tried to calm us down. He was like that the entire stay. He checked on us. He always asked us how we were doing. He gave Mason a teddy bear right before we left.

We wouldn't have been able to do it without Family House, honestly, because we were there for quite a while after his transplant and because we live four and a half hours away in Reno. They needed us to be close because we had to do blood work every three days. It was a blessing that Family House was there.

We stayed at Family House for five weeks post-transplant before we got the clear to come back home. And we'd had a few stays prior to that as well, when we were doing all the pre-transplant testing. You need quite a few trips back and forth. We always had a place to stay.

FH: Was there anything that surprised you when you first started staying at Family House?

Sara: They have pictures of some of the kids that have stayed there, and it makes you realize that you're going to make it through. You see the kids. Some of them have sent in pictures afterwards once they’re well. I think that was a pleasant surprise, just to be able to see their journeys, and know that there is an end to it.

One of the hardest things - there's really no one else that truly understands what you're going through unless they're going through it, or have gone through it. People can sympathize, but there are very few people that can actually empathize with you. Meeting some of the families, and hearing their stories, it was definitely helpful. But when you have people there that know exactly what it is, it's somehow comforting.

FH: How is Mason doing now?

Sara: He's doing amazing! It's like nothing ever happened. He's four, and he had his first organized sport this year. We put him in soccer. He's just blossoming. He's growing, and he's just really happy. He's like the happiest kid ever.

FH: Is there one thing that you wish other people to know about Family House?

Sara: Just that it really is home away from home when you're in that kind of situation. It's more comfortable than staying at a hotel. You have all of the comforts of home. You've got your kitchen there. You've got your living room. There are tons of movies and toys to play with. They have volunteers going in and out of there cleaning the place all the time. It's incredibly clean. It's just a huge blessing that it's there. It's one of those places I wish more people knew about, and contributed funding to. I try to tell as many people as I can about it. There are people who want to do their end of year tax deduction, giveaways and I'm like, "Donate to Family House. They're really actually helping families."

To donate to Family House, please visit: https://familyhouse.ejoinme.org