Feeling the Love on Valentine's Day

We remember Hans and he lives in our hearts everyday.  This Valentine's Day I'm sharing a list of the many groups, funds, foundations and charitable efforts helped us during Hans' long fight against Neuroblastoma.  I started to think of HOW MANY different groups were there for us over the years - and I figured I should make a list!  We were humbled, and overwhelmed - we were a middle class professional family, we didn't expect we'd be finding ourselves on this side of such charitable efforts...
It's amazing when people are moved to do charitable things for others.  It truly makes a difference.

Gifts, Cash and checks at initial diagnosis - we were flooded with cards and gifts just as soon as Hans was diagnosed, a coworker brought us an envelope stuffed with approximately $800 cash the week we were diagnosed, friends brought gifts, and Hans’ school collected a CRV full of toys and books to keep Hans busy while inpatient.

Fund for Hans set up by friends and community members that first week of diagnosis.  We received a letter and a check for $1,000 from a company in Huntsville, TX.  It was part of their charitable giving program to make meaningful contributions to families facing pediatric cancers, and to support them as they “endure and persevere”.

The Run for Hans set up by friends, my running coach, my SSJMYC playgroup, and my co-workers at Little Saints preschool,  was held three weeks to the day of Hans’ first visit to the TCH ER.  The Run for Hans raised approximately $20,000 which we used for medically related expenses.

Meals from the Saint Anne’s Society were delivered three days a week for five entire months starting the week Hans was first discharged from the TCH.  The meals were lovely and balanced and catered to our dietary restrictions (no beef, no pork).  We also received meals from friends at two points later in treatment, once organized through Meal Train.  These meals helped us get through particularly busy and unpredictable treatments.

Candlelighter’s Houston often provided us parking passes to cover the $10 daily parking fee to park in the garage when we came in for clinic visits many days each month.

Child Life  provided Hans with a toy at many clinic visits as well as many inpatient stays.  They also provided Hans with education, support and distraction during difficult procedures and transitions.

His Grace Foundation provided support while Hans was inpatient on the Bone Marrow Transplant unit.  They treated each family on the Bone Marrow Transplant Floor to a gift basket of useful hospital items upon arrival, a weekly shopping trip, special dinners and weekly breakfasts, as well as weekly massages for parents on the unit.

Hospital based donors and groups like Junior League and Radio Lollipop came through the clinic and hospital floors with toys, meals, gift cards, etc.  Each gift and visit boosted spirits and made something positive and special to that day and brightened it just a bit.

Social Workers had access to certain funds and benefits and would also help out at time with parking passes, meal vouchers, etc.

Friends and family members, and virtual friends would frequently send cards, and gifts. Each gift was a blessing and would keep our spirits up.  Hans was adopted by a “lego fairy” (a friend of mine from High School) who sent special shipments of legos to keep Hans’ fingers busy.

Children’s Neuroblastoma Cancer Foundation sponsored a Parent and Caregivers Conference for Neuroblastoma families.  We atteneded in 2007, and the CNCF sponsored our hotel stay.  When we went back in 2009, the CNCF sponsored our travel expenses so that we were able to attend.  Neuroblastoma experts from all over the country were present at this annual conference and informed families about research developments in effort to improve the outcomes for kids with this cancer.

Through Candlelighters, we were adopted by HP one Christmas, and Hans’ Christmas wishlist came through exponentially.

Legacy of Love - a Child Life Specialist came to visit Hans for home visits and they worked on special projects together.

There’s a Monkey in My Chair - When Hans was on homebound education, this group sent an adorable stuffed monkey to occupy his chair in Mrs. Parker’s class and represent him while he was at home.  It helped foster a home-school connection between Hans and his classmates, and it helped encourage Hans to visit class for special occasions when he could.

Sparrow Clubs The Woodlands High School ninth grade campus Sparrow Club adopted Hans as their Sparrow Child.  The school did various fundraisers to help support Hans in his fight against Neuroblastoma. The 9^th graders sold wristbands and did a Walk-a-Thon.  They raised approximately $15,000 to use toward treatment-related expenses.  This program miraculously kicked in when Hans had first relapsed, after the Run for Hans funds had just been exhausted.  It felt miraculous that yet again, we did not have to be burdened with the financial impact of his treatment. It gave us incredible freedom to travel to seek second opinions and treatment elsewhere. Relapsed Neuroblastoma sometimes requires expertise and clinical trials far from home.

National Children’s Cancer Society covered many of the travel expenses for medically related travel.  They could cover plane tickets, bus fare, cab fare, even a small stipend for meals while traveling.  They could assist with hotel and Ronald McDonald House bills.

CAREFORCE Continental Airlines Frequent Flyer Miles donation program. CAREFORCE donated two plane tickets to a family traveling for medical treatment. They also consolidated donated miles through a miles drive for an indivual needed to travel for a life-threatening illness.  Our friend Mark was a Continental pilot, and his wife Michelle found about this program.  She and other friends organized Miles Drives and almost one million miles were donated to our family for Hans’ treatment.  Our CAREFORCE representative shared with me that he wasn’t aware of any other individual raising more miles in a Miles Drive.

Aetna and United Health Care had travel funds for traveling for cancer treatment to a hospital or facility more than 50 miles from home.  We used these funds for airfare, travel, lodging and meals while traveling away from home for Hans’ treatments.

Sunshine Kids - this was a Houston group that promoted fun events, parties, trips and good times.  This group gave families tickets to sporting events like hockey and soccer games, and even gave families spending money for the outings.  There were also tickets to The Houston Rodeo, and a fun weekend at Schlitterbahn - A water park in the hill country.

Periwinkle Foundation - is a group that put on arts programs, camps and events for cancer kids like Family Camp and The Ranch trip.  These trips were free to families, and they were a huge blessing.  We were in a situation where we could never plan anything.  We couldn’t count on the fact that Hans would be well on a particular day we made plans to make a short trip.  We never made a commitment to travel, not wanting to scrap it at the last minute, losing out on funds and also suffering just a bit of heartbreak from not being able to do something we’d look forward to.   Special trips like these were supported with medical staff and caring volunteers who were willing to work hard to make trips successful for medically fragile patients.

Make A Wish Foundation - Hans had been into volcanoes and had suggested we take a trip to see Arenal in Costa Rica.  The Make-A-Wish people weren’t certain we weren’t feeding him the idea, they had to interview him independently from us.  They finally approved the trip.  But, by that time, side effects related to Hans’ adrenal insufficiency made us feel like such a trip was risky.  We put in a request for a ”treehouse” Rainbow Play Structure.  Make-A-Wish had it installed in our backyard, and it created a special play space for Hans and Elle.  It had a swing, a slide and a clubhouse. It was right outside and private, so if he wasn’t feeling well, or if we were worried about low white blood counts and we couldn’t take him out in public, we had our own very special place to play. What a gift!

Corporate Angel Network -  We got one round/trip flight from Houston to Philadelphia on a corporate jet.  It was complete with door to door car service and an in-flight meal that included a filet mignon (which I don’t even eat)!  I enjoyed the luxury, and the fact that our bags were handled for me - from car to hotel.  But, Hans preferred the Continental Airlines flights he had gotten used to, with the seat back TV and his own remote control.

Ronald McDonald House - the Ronald McDonald house made a huge impact to us both on an inpatient basis at Texas Children’s and CHOP, but also on an outpatient basis at CHOP and CHLA.  RMH provided a wonderful, useful family room with a kitchen on the 9^th floor of TCH.  RMH organized donors to provide meals regularly on the floor, and they baked and delivered cookies to patients in their rooms.  As an outpatient, when we were in Philadelphia, or LA, the RMH would provide a safe, warm room for us.  Rooms came at a bargain of just $15 donation per night.  The house miraculously provided a donated meal each night.  The Philadelphia RMH is the first in the country and different community groups organize to provide house meals each and every night of the year.  It’s amazing. A menu is posted, and families can design their weekly menu around the offerings.  RMH would sometimes be full.  In those events, the RMH social worker would almost always be able to  provide us with a voucher for a medical rate at a nearby hotel.  Hotel rates would be cut in half or less to make prices manageable for families.  RMH also had a toy stash for kids, tickets to special events such as hockey games and the zoo, and voucher for families for things like haircuts.

Family House in San Francisco was similar to RMH.  When Hans was in treatment at UCSF, family members could stay at Family House for a very low rate.  Family House provided a kitchen, a laundry room, shower and some staple pantry items and snacks.

 Family Funds through social workers at CHOP and CHLA got us through some situations we hadn’t anticipated. They helped with things like South West airlines passes for flights to Philly, they could help cover the excessive costs of medications that, on a very rare occasion, insurance wouldn’t cover.  These funds were available with immediacy in certain situations where the funds were needed quickly and there was some desperation involved.

The Protectors Foundation- is a small family nonprofit in Texas, honoring a father and a son who were both lost to separate cancers.  In 2011, our family was selected as the beneficiary of the proceeds of their annual golf tournament.  The funds were to be used for treatment related expenses. They provided us with a couple thousand dollars to use toward treatment related expenses.  Again, miraculously, the other funds from the Sparrow Clubs had been almost all used up when we were gifted with these funds.

Small Miracles Foundation - is a small family nonprofit in California designed to support families cover a child’s medically-related expenses.  In the Spring of 2012, Small Miracles picked up a handful of hospital bills, prescriptions, and they gave us 9 $50.00 gas cards to travel to and from the hospital and clinic. Again, miraculously, these funds became available when the funds from the Protectors Foundation had been spent.

There are numerous small programs through hospitals such as Literally Healing, a group that will delivered a book a day to children inpatient at CHLA, and Dog Therapy, who brought dogs onto the floor, to bring a little simple joy to sick kids who are not only missing their families and homes, but their beloved pets as well. Groups like the Lemondrop Foundation provided fun assistance to families and organized volunteer photo shoots for families with professional photographers.

Privately, we received support from friends and family in various ways as well throughout Hans' treatment.  We probably received other wonderful support from organizations that I don’t even recall off the top of my head.  It is staggering when you add it all up.  This list doesn’t even begin to account for all of the efforts and contributions that go into making modern Children’s Hospitals as wonderful as they are through organizations like Children's Miracle Network and Starlight Foundation and other groups.  Nor, does it recognize donors that contribute to the actual hospitals or the research of the clinical trials.  Groups like Alex’s Lemonade Stand and Saint Baldrick’s and others have given millions and millions over the last decade to fund research and improve outcomes for pediatric cancers.  All of these resources, combined, kept us in the black, they kept us on our feet and they kept Hans in the fight.  They allowed us to follow our gut instincts to the most relevant clinical trials and compassionate-use therapies we could find for our boy.  They bought Hans years of life.  These contributions kept us in our home and out of serious credit card debt and default.  They were miraculous in the way they appeared in perfect timing and order for us to pursue the best treatments for Hans.  Amazing!