A Moment of Inspiration

THE HOUSE OF BELONGING

I awoke
this morning
in the gold light
turning this way
and that

thinking for
a moment
it was one
day
like any other.

But
the veil had gone
from my
darkened heart
and
I thought

it must have been the quiet
candlelight
that filled my room,

it must have been
the first
easy rhythm
with which I breathed
myself to sleep,

it must have been
the prayer I said
speaking to the otherness
of the night.

And
I thought
this is the good day...

by David Whyte

Re-Mission

Re-Mission

A screenshot from the game

                Here at Family House we recently got a donation that we can’t wait to share with our guests and anyone else who may have children battling cancer. It started with HopeLab (visit www.hopelab.org for more information), a nonprofit organization founded in 2001 and their mission to combine the highest standards of scientific research with innovative solutions to improve the health and quality of life of young people with chronic illness. They then developed a wonderful video game called Re-Mission (visit www.re-mission.net ) in which kids assume the role of Roxxi—an armed nanobot who works through various missions to battle colonies of microscopic cancer cells and save the healthy organs.  

This game focuses on helping the issue of medication adherence, which is a complex problem for teens and adolescents with cancer. They typically have numerous prescriptions that change frequently and have quite toxic adverse effects. These young people need intense support to help make medication adherence a priority. In the randomized trial, patients who played Re-Mission were more likely to adhere to their oral medications. Not only did they enjoy the game, but their improved adherence may possibly lead to improvements in overall health.

Re-Mission is a fun video game for kids and it can be a welcome distraction from the side effects of the disease and the medication that treats it.  It is also a helpful learning tool for children who may not understand cancer and its effects on the body. Moreover, Re-Mission empowers siblings. It provides a way for them to learn and understand cancer and treatment in their time and on their terms. Re-Mission provides a way for kids with cancer and their sibling to join together in the fight against cancer – and begin to talk about cancer.

We are excited to share this fun, educational, empowering game with our Family House adolescents and teens, and hopefully it can make a difference both in medication adherence as well as their understanding of the disease. For our families that are back home, or for anyone at all who might find this a useful tool, you can simply visit the website and download or order copies of the video game for free. We’d love to hear feedback on what families think of the game!

Family House Community

           As many of our families tell us when they open up about their favorite aspects of Family House, the sense of community built up here is incredible. Families that stay here are able to meet others going through similar situations and form bonds that help support them while here. Many parents have told us that the relationships they’ve forged during their time at Family House are irreplaceable connections that will remain long after they leave. The other weekend, two families currently staying at our 10^th Avenue home went on a little trip that exemplified what our Family House community truly is.

           We recently interviewed the Atwood family, who came to us from Fresno a number of weeks ago so that their young daughter Laci could receive radiation treatment. While here, they met the Courtemanche family and instantly became friends. Meanwhile, back home, John and Karissa Atwood’s friends were organizing a monster truck racing fundraising event for Laci. The Atwood’s decided to invite their new friends along for the trip, and both families packed up and made the drive down to Bakersfield for the weekend.

In their hometown, the Atwood’s provided everything for the Courtemanche’s to make sure they felt welcome and supported. Then, the day of the event, the community of support fostered at Family House became even more apparent as Abbi Courtemanche stepped up to help in the fundraising for Laci as she went around with a hat collecting donations. The fundraiser ended up being a huge success, due in part to Abbi’s help in gathering donations. The Atwood family then made a great gesture of friendship in sharing the proceeds of the event with the Courtemanche family.

It is connections and friendships like these that embody the sense of community at Family House, and we thank all of our families for always thinking of each other in such generous and thoughtful ways!

The Fernandes Family Story

The Fernandes Family

The Fernandes' journey in San Francisco and with Family House began in 2010 when their son Frankie was found to have a tumor at the base of his neck. Frank Fernandes and his wife Diane would like to share Frankie's story, from his point of view:

"Hi,
My name is Frankie and when I was 5 years old I was having a lot of neck pain, so my mommy and daddy took me to the doctor. It all started about June 18th when I started having this really bad neck pain. The pain would come and go. We went on our family vacation to Disneyworld the last week of June and I didn't feel real good, I was tired and my neck kept bothering me. On 4th of July I had a really bad episode and my parents took me to the ER at Kaweah Delta, but they couldn't figure out what was wrong so they gave me some motrin and tylenol, and sent me home. Two days later I went to see my doctor. Dr. McNich did some x-Rays of my neck and a swab of my throat everything looked normal and she was stumped, so she sent us to Childrens Hospital in Madera. On July 12, 2010 we found out, from the doctors at Valley Childrens in Madera, that I had a tumor at the base of my brain. They decided to send us to UCSF San Francisco since they are the best for these types of tumors. This is where we learned I had a tumor called a Clival Chordoma and I would need to have surgery to remove it. After a couple months at UCSF I then underwent 8 weeks of Proton radiation treatment so that my tumor would not come back."

Frankie at UCSF hospital

Unfortunately, as is the case with many of our families, this was only the beginning of the treatment process Frankie would need to undergo. Over the course of the last two years, the family has kept a personal website including journals that they wrote to detail day to day struggles and triumphs over the course of Frankie's treatment, as well as Family House and its importance to them (see journal from 3-21-2012). Frank and Diane would love to pass their website info on to all, so everyone can read their journals. Please visit http://www.caringbridge.org/visit/frankiefernandes to learn more about the Fernandes family's story!

The Atwood Family Story

Karissa, Luke, John, and Laci @ Family House

The Atwood family is currently facing an illness that changed their life in an instant. Only two months ago, on February 21st of this year, parents John and Karissa learned that their youngest child Laci had cancer. After the diagnosis of embryonal botryoid rhabdomyosarcoma—which is one of the more common, tumorous forms of childhood cancers—the Atwood’s life has been a whirlwind. As it turned out, although Laci had a common type of cancer, hers was incredibly rare in its location; located in her ear and temporal bone, less than one millimeter from her brain, surgery was not an option. What all of this meant was that Laci was now classified as having Stage III cancer and would have to undergo a 42 week treatment plan, involving both chemotherapy and radiation.

The Atwood’s immediately began the treatment process at their home in Fresno, CA, but were halted shortly thereafter when their hospital’s radiation machine broke. John, Karissa, Laci, and 5 year old brother Luke were forced to move quickly: it was 9 PM the night they learned that they needed to be transferred up to San Francisco, and they had to be at UCSF Benioff Children’s Hospital by 9 AM the next morning. The family remembers being told that they were going to stay at Family House, and that everything was already set up for their arrival. However, John was skeptical at first—a feeling that many families may have upon their impending arrival to this new home away from home.  He laughed, confessing that on that first night he took his family to stay at a hotel instead.

After being here for over three weeks, John was happy to share that his feelings of uneasiness about coming to Family House have completely subsided. He noted that even if his family could afford a different living situation while up here in San Francisco, they would still choose to be at Family House. He summed it up, saying that they “wouldn’t do it any other way”. When asked what they like most about Family House, John and Karissa agreed that the feeling of community between all the families staying here is one of the best perks. Whether they are connecting with families going through the same diagnosis that they are, or whether they are learning about different situations than theirs, the Atwood’s appreciate being able to share this time with a new, inner support group. In fact, they said that they have formed life-long friendships in the few weeks that they have been here. These newly formed friendships, as well as the supportive staff, have led John to remark that by being here he has changed for the better.

The Corona Family Story

The Corona Family with Bobby the Easter Bunny @ our 10th Ave. house

In the past year, the Corona family’s life has been completely turned upside down. Last May, they found out that their 3 year old son Steven was suffering from retinoblastoma, which is cancer of the eye. Unfortunately, retinoblastoma can be hereditary and the family went through this once before, with Steven’s dad many years prior.

The treatment plan led Steven, mom Brandy, grandma Janet, and baby sister Vivianna up to San Francisco to work with doctors at UCSF’s children’s hospital. Currently, the family is completing a five week stay at Family House while Steven receives 30 minute sessions of radiation treatment, 5 days a week. This treatment is an attempt to save his right eye, and prevent him from becoming blind (previous treatments were unsuccessful in saving his left eye).

While this isn’t the Corona family’s first stay at Family House, it is definitely the longest. Previously, they have stayed with us for just a few days at a time. Because Steven’s dad must stay home and work while everyone else is up in San Francisco, the time apart could be hard on this close family. However, they all pack up and drive home every weekend so that they can see their dad and spend time as a family, and on Sunday nights they drive back to begin another long week of treatment. They live about an hour outside of Fresno, so the roundtrip drive each weekend can take almost 10 hours. 

When they are here during the week, the family described the atmosphere using the words warmth, comfort, and security. In terms of security, the family referenced the way that they are always taken care of here: “any time we need something, it’s there… sometimes I can’t believe it and I have to say ‘pinch me’“. Aside from the great atmosphere here, a few of the Corona’s favorite parts of Family House are the events for the kids and the passes that Family House offers (to the zoo, Academy of Sciences, etc.). While the children’s activities help Steven get his mind away from his daily morning treatments at the doctors, Brandy says that the family passes help the parents take their minds off the doctors and allow them to clear their head from everything that is happening while they recharge in a different environment. What the family appreciates the most here, though, are the people in general—the families that come through here. Janet noted candidly:“you think that you’re by yourself in this world, but then you meet other families here… the people who you meet here allow you to experience it with someone else.”

A Volunteer’s Story: Nicole Riley

           

          As an undergraduate student studying Psychology at USF, I enrolled in our “Practicum” course this semester, wherein each student gets the chance to volunteer in a community setting of their choosing. In looking through places where other students had previously volunteered, Family House immediately stuck out to me because I am passionate about serving youth, but had never worked with those stricken by life-threatening illnesses. Being someone who is easily taken by emotions, I felt that being placed at Family House would challenge me to be a stronger person while supporting an incredible organization that gives to the families of children in need.

          In my few months volunteering at Family House so far, I can say confidently that I have become a stronger person through those I am surrounded with when I am here. The welcoming and compassionate staff help create the home-like feel that is within the walls at Family House, and the kind and thoughtful families that stay here bring joy to circumstances that are often bleak. Combined with all the volunteers that come to keep the house safe and tidy, cook and do crafts, and offer support from therapy dogs, I’ve seen a very strong and uplifting sense of community apparent in this house.

           I have been fortunate to see many different sides of Family House, from working through the house check-list to make sure everything is stocked and in working condition for the families, to helping keep Family House connected to the greater community through social media, to interviewing families so that I can learn their stories, to attending fundraising events. One experience that truly opened my eyes to what an incredible organization Family House is occurred during a volunteer shift at their annual Cabernet for Connoisseurs​ fundraiser. Near the end of the night, during the auctioning, they held a live pledge and I watched in awe as person after person after person raised their paddles to give to Family House. Seeing a ballroom full of people jumping to give their support to Family House was evidence of what an impact they have made on the population that they are serving and of the faith that the community has in their endeavors.

          In beginning my placement at Family House, I was told by my Professor that I would have a dual role: I would be a server, but I would also be a learner. In whatever ways I can, I have attempted to serve this beautiful organization and the work that they do as a home away from home for families of children with life-threatening illnesses. Perhaps more importantly, I have been taught so much by the staff, families, and other volunteers at Family House. I have seen that it is possible to show strength and comfort and compassion during what may be impossibly hard times. I hope that I can continue to lend support to Family House long after my practicum class comes to an end.