Wednesday, May 23, 2007

Logos Galore!

Several times a week, we hear compliments on the Heroes for Children logo. It is represents the mission, vision, and inspiration of Heroes for Children so perfectly. The two angels, Taylor and Allie, at the center and heart of our work. How fitting.

This wasn't an easy process. Remember, we were originally Taylor's Angels, with an adorable angel logo already in place. When I joined, we wanted something to represent Allie too. Our poor graphic artist, Christy Mensi, agreed to help us. We told her that Allie loved giraffes. They were her trademark item--the thing everyone associated with her. So, here was our thought--giraffes, angels, and the name Heroes for Children, ok? Not ok. 17 tries after hearing us say, "oh, that's nice, but it isn't the one," Christy took it upon herself to come up with what became our brand. "We love it! It's perfect! Exactly what we were wanting!" we exclaimed. Not sure--but I like to imagine that Christy eye rolled a bit at us and was happy with her final product.

But in the past few years, Christy has been commissioned more than once to help with more logos. I give you the other great logos--

Our most recent addition...

Seriously, do you know how much I LOVE those?
Be on the lookout for the most current logo project, for our newly created Texas Hold'em Tournament (coming to Dallas November 1st!) very soon. Christy is once again very patiently listening to our suggestions and changes to help us create the perfect fit for us.
Christy--thank you, thank you! Heroes for Children would not be what it is today without you. We're blessed and honored to have your talent, support, and wonderful support behind the mission of Heroes for Children!

Monday, May 21, 2007

Volunteer Voyage: The Conclusion

I have always believed the maxim "everything happens for a reason". Sometimes those reasons are unfathomable or indiscernible, but I do wholeheartedly believe that there is some sort of greater plan to everything. And sometimes, in moments of hindsight and clarity, I feel that I can understand why events unfold the way they do.

Over the past few years, as I became more involved in volunteering with organizations that supported the pediatric cancer fight, I also realized that my career in education was no longer satisfying to me. I still loved helping people, and I still felt that education was a noble profession, but I no longer felt it was right for me. Federal and state mandates, entitled parents and students, and a growing discontent with the lack of creativity and freedom caused me to re-evaluate what I wanted to do with my career. At the same time, I picked up my family of five and relocated from Rhode Island to Austin, TX in June, 2006. I was seeking a more authentic life on a variety of levels, and did some serious soul searching about who I was and what I wanted for my life and my future.

I have learned more than I should about childhood leukemia over the past three years, more than I should because, quite simply, children should not have to endure this disease. I have learned the difference between acute myeloid leukemia and acute lymphoblastic leukemia, the potential longterm effects of chemotherapy on a young developing body, and the statistics on recovery and relapse rates. I have fallen in love with children that I have never met, sincerely grieved when they lost their battle, and triumphantly celebrated when they graduated from treatment. I have grown passionate about this cause in a way that I never imagined, in a way that transcends merely sending a charity check or doing an annual fundraiser.

Since moving to Texas, I have been fortunate to work closely with Jenny Scott and Heroes For Children, and my commitment to the cause has only deepened. After many discussions, and with the support of my husband, I have decided to dedicate my professional career to working with families fighting the good fight against cancer. I am excited to share that I will be attending the University of Texas School of Social Work in the fall, in the Master's of Social Work program, specializing in medical social work. It is scary and stressful to change careers at the ripe old age of 32, with 3 kids and a decade of time invested in another profession, but the way I figure it?

If these kids can have the courage to stare cancer down, the least I can do is stand next to them and hold their hand.

I look forward to sharing my experiences with the Heroes for Children blog as I navigate this new path of medical social work!

Volunteer Voyage Part III
Volunteer Voyage Part II
Volunteer Voyage Part I

Wednesday, May 16, 2007

Mothers Day

Mothers Day is always a bittersweet day for me. I lost my own mother to breast cancer when I was just 16 years old. So, after that, I never much cared for Mothers day. It was just a very sad reminder of that huge void in my life. Then, 11 years later, when I became a Mom, it took on a new meaning. Sure, I still greatly missed and longed for my Mom, but I had a beautiful baby girl of my own, and I was a mother! Then, less than two years later, ON MOTHERS DAY, my second daughter, Tristyn was born! As I say, she is the gift that keeps on giving!! Now, eight years after Tristyn's birth, I am pregnant with my fifth child! Yes, I can't even believe it! Five pregnancies, four kids, what am I thinking?!?!?! Anyone know a good nanny?! I will need one!! I am very blessed to be a Mother to three, hopefully soon to be four, sweet, beautiful healthy kids! Yes, they challenge me, and completely wear me out some days, but they are my babies and I love them dearly. I pray every night that I will live a long, healthy life, and get to be there for the marriage of my children, the birth of their babies, and live to be a grandmother that is active in her grandkids lives. I pray and long for all those things my own Mom and I missed out on. What I would give to have her here to talk to, to rock my babies, to take my girls shopping. All the things she missed out on dying at the very young age of 40. She does have her sweet, angel Taylor with her in heaven. That brings me comfort, that my wonderful, loving Mother, and my sweet first born, Taylor Anne, are in a world without pain, heartache, violence or cancer. They are together. Happy belated Mothers day to all of you Moms out there. May those of you who have lost your Mothers, or lost children, find peace.

Tuesday, May 15, 2007

Where was this service when my daughter was sick?

Heroes for Children has just teamed up with Lotsa Helping Hands. It's an online community families, friends, and supporters can set up for a loved one to help support. People can create an online community for a loved one to help get meals coordinated, carpool ran, and even playdates for other kids. Where was this service when my daughter was sick? What an incredible thing to provide for families! Did I mention it is FREE to users?

One thing I have found to be true is that the inability to fix the problem is what creates such anxiety in supporters and loved ones of those sick. Helplessness sets in when we watch someone suffer without the ability to make a difference. Until my father passed away, I didn't understand why people brought meals to others. I get it now--simple as they are, meals mean a lot. Every time someone brought a meal to my family, some of their feeling of helplessness was alleviated. That was their contribution and way to help my family. And yes, it made a big, HUGE difference. It was one less stress in my life. I didn't have the time, energy, and opportunity to leave my daughter in the hospital to get my meals each night. Since we lived in the hospital the entire duration of her cancer treatment, I depended on those nightly meals brought by friends and even strangers to keep me going.

It was only three years ago that we were asking friends to help bring meals. My sweet mother in law opened her own e-mail account to manage the e-mail traffic of generous supporters wanting to do their part. Often after spending hours visiting her sick granddaughter in the hospital, she would her evenings sifting through e-mails, sending reminders to those that signed up to bring a meal, and coordinating a calendar (of course, while this was going on, my own mother was home after hours in the hospital washing all our clothes each week!). How great would it have been for my MIL to simply have an online community that she managed? Once a supporter signs up for a meal delivery, the Lotsa Helping Hands site sends email reminders of their commitments, books the calendar dates, and updates with any changes to the calendar. It's easy, free, simple to use with a big impact for those receiving the service. How much better can it get?

What a convenience being offered to families!

Wednesday, May 9, 2007

Congratulations to HFC on a Great First Half of 2007!

As we reach the midpoint of 2007, it is truly amazing to reflect upon the great strides that HFC has made year to date. In addition to creating this informative and heartfelt blog, we have dramatically expanded our fundraising efforts and our Laptops for Love program.

The second-annual Heroes & Handbags event took place in Dallas on March 29. As the live auction chair, I was overwhelmed and thrilled by our success. We were amazed by our guests' extraordinary generosity on all fronts. The live auction items ran the gamut from luxury vacations to an alligator and diamond handbag by Sue Gragg Precious Jewels to Tiger Woods's golf bag. Additionally, we decided to take a risk and offer an "intangible" live auction item - the opportunity to purchase the next laptop through our Laptops for Love program. Although we did not know what kind of response to expect from the sale of an item that the winner would not actually take home, the response dramatically exceeded our expectations. We were overjoyed because we sold 17 laptops in about five minutes! Thanks to the dedication of our chair, Lucinda Buford, the entire Heroes & Handbags Dallas event was once again extremely successful and everyone who attended had a wonderful time.

Two weeks later, our friends in Houston held their inaugural Heroes & Handbags event. Based on the feedback that I have received, the day was quite memorable and their hard work paid off handsomely. We were all thrilled by the extraordinary response to the donor cards that were placed at each guest's seat.

As we look ahead to the upcoming 5K and golf tournament, I have no doubts that we will be able to continue to build upon our successes from the first half of the year. For now, though, it is extremely gratifying to be able to fulfill so many requests for funding and laptops in both Dallas and Houston.

Tuesday, May 1, 2007

My Life as a Mom to a Baby with Cancer

Part II – Chemotherapy

Christmas came and went and while Brandon was healing from his recent liver biopsy, we were still reeling from his Hepatoblastoma diagnosis. Our team of 3 wonderful Oncologists researched and came up with a plan for Brandon using a protocol that was working well with Hepatoblastoma patients in Europe. Our protocol would consist of 4 rounds of Chemotherapy every 21 days to shrink the orange sized tumor, then go in and remove part of his liver (resection) along with the tumor and follow up with 2 final rounds of Chemo to “mop-up” anything that might have been left behind. Then Voila! We would hopefully have a cancer-free baby! The success rate is good – 60%! The scariest part was hearing this is a cancer that does relapse frequently up until the age of 5. But, one step at a time. So let the Chemo commence!

The Chemotherapy drugs Brandon is taking are Doxirubican & Cisplatin. We were given information sheets of all the possible side-effects, some would be more severe than others. Cardiac arrest, heart failure, kidney failure, cerebral hemorrhage, pneumonia, mouth/body sores and hearing loss were just a few. Sobering to say the least! I fought the urge to want to hide Brandon under a blanket and run off in denial that this was really happening. Though knowing this poison holds the potential for a cure, running away was out. Besides! Brandon is heavy and I doubt we would get far running! :)

Much of what I had known of Chemotherapy and Cancer consisted of knowledge gained from television shows such as ER or St. Jude’s commercials. So needless to say, I was not too prepared for what we were about to experience. Brandon’s treatments consisted of a 48 hour infusion, so we were always admitted to Camp Chemo (Medical City Dallas) for 3 days. One of the most difficult factors for us thru Brandon’s illness is that we do not have any family here in Texas. I was a new stay-at-home mom so daycare was out, we literally had nobody to care for Aiden while we were in the hospital. My husband would juggle days off work, we asked neighbors, anybody we trusted if they could watch Aiden for us. It was hard for me to pass Aiden around and not worry about him. Often our family would fly in to care for him for long stretches of hospital time, but there are so many times we never know when we will be hospitalized and those are the times it’s hard to find last-minute help. We now have a few key people we know we can always count on when we have to go in fast, they are a true blessing.

The first day of treatments is always the most challenging. Saying goodbye to Aiden and tucking Brandon in his car-seat, he is always smiling as if we are going somewhere fun all the while I felt like dying inside. At first I always cried in the car on my way to check-in. I couldn’t believe this was reality, I was taking my 10 month old to get Chemo treatments, who does that?! Before going in, I’d wipe the tears and put a smile on my face, we were here to cure my baby, Aiden will grow up with a brother. Upon arrival it’s fast and furious, check-in, vitals, all that fun stuff. Brandon is hydrated via IV for 6 hours before starting any drugs. He then takes a cocktail of anti-nausea meds and usually we get started with the Chemo in the evening after 9pm. The first time he was administered Chemo it was as if I was in a different world. First, there was a large box delivered labeled “TOXIC WASTE! CHEMOTHERAPY INSIDE .“ This sat in the corner like an elephant in the room. The nurse came in wearing a gown, surgical mask, gloves, hair net and all. She carried the Chemo bags carefully and informed me I would have to change Brandon’s diapers with gloves on my hands for the next 48 hours. It could be harmful to my skin if exposed to the waste. Ugh, this is what is coursing thru my son’s veins?! There was one exciting evening when his IV started leaking the drugs. The reaction of the staff was quite intense, and after some scurrying about one of the nurses assured me that it wasn't the "toxic flesh eating kind this time." That always makes you feel so much better. They got his sheets cleaned, mopped the floor, and I gave him and myself a quick bath. I was wondering for a moment if they were going to bring in some kind of team in hazmat gear!

Brandon has always done really well with tolerating the drugs the days he gets them. He has always been the happiest baby, he smiles and plays peek-a-boo, he fiddles with all the wires on him and laughs. But something does change about him, his eyes gloss over, he becomes lethargic and is always the most content rocking on my lap looking at touchy feely books. Every 4 hours around the clock he has his vitals taken. Babies are not fond of blood pressure cuffs, so every means of diversion are used to help get a good reading! The evenings are the hardest, the monitors beep loudly all night, our wonderful nurses - as quiet as they try to be, it’s just not possible to sleep thru all the comings and goings. Brandon also has never liked that big metal crib. I try and sleep as close to him as possible, so he can peer at me, but it’s not the same for him as being cuddled in bed with me and he enjoys ramming his chubby little feet in my ribs. The night is when my mind races, I miss Aiden and pray for Brandon’s healing and all the other children fighting this awful disease.

The anticipation of being discharged on that 3rd day rises within me like a tidal wave. I know that 3 days really isn’t that long, but that stroller is packed and ready to go by the time our Oncologist makes his rounds! I know we will have 4-5 days of Brandon feeling OK after Chemo that I have to take advantage of because by day 6, he is miserable. This is the time frame his counts will drop dramatically and he becomes a target for infections. He becomes inconsolable. His body begins to ache, he develops awful mouth sores that make eating impossible, painful constipation and extreme tiredness. I’m sure there are other issues he has, but he can’t tell me how he feels or what is hurting. He spends those days crying and whimpering on my lap. My heart completely breaks for him. While I try to console Brandon, little Aiden is pulling on my legs wanting to play. I feel split. I want to be the mother both babies deserve and long for the day Brandon no longer has cancer, no pain from the drugs and we can play and go places without worrying about germs and blood counts hospital visits. Little things we used to take for granted are a huge deal to us now. Just being able to go to the park on a nice day is now a most glorious day!

Between treatments sessions we are often in the hospital for blood transfusions or platelet transfusions, these help him when his counts are dangerously low. We also make trips for dehydration when he won’t eat from mouth pain and the worst is the fevers. Fevers are scary in a cancer patient and I am always armed with a thermometer like a madwoman, feeling Brandon’s head and taking his temperature. If he spikes a temp of 101 it’s off to the 6th floor we go. We get to bypass the ER since he can’t be around infectious people during this time. He has always rebounded fast from his hospital visits, he is so strong!

Brandon’s hair began to fall slowly and by March, his hair and eyelashes were gone. Loosing his hair did not bother me so much as loosing his eyelashes, his eyelashes were long and curled, so beautiful! I know all this will grow back, though I can’t imagine him with hair anymore, he is a beautiful bald baby and to me the bald children are the bravest, strongest little warriors I have ever come across. These little bald warriors are what Hero's for Children is all about! I know Brian and I will always be thankful to HFC for helping us! As awful as Cancer has been in our lives, it has also shown us a whole new world of compassionate, caring people and has introduced us to some of the most amazing people we would have most likely never met!

For Brandon the Chemo was working wonderfully, he responded so well to treatments, his AFP (tumor marking score) had gone down from 18,000 at diagnosis to 150 the day of surgery. (normal is under 5). All that was left, was to take that tumor out! It was the day of the big surgery, the day we had been waiting for! Brandon was to have his liver resected and the tumor removed along with a portion of his liver. The liver is an amazing organ – it is the only organ that can regenerate itself, so there would most likely not be any complications with him having ½ his liver removed. An hour ½ into the surgery, one of the surgeons came into the waiting room. He asked me to find my husband and come with him. I knew this could not be good, other people were getting their surgical updates thru a waiting room phone call. I was in tears as I opened a meeting room door and saw all the surgeons and our Oncologist there. I could barely catch my breath as I tearfully choked out if Brandon was ok. It was then we were told the surgery was not going well, his tumor could not safely be removed. Though they knew going into the surgery, this tumor was close to major veins/arteries. Once inside they discovered just how vascular it was and our surgeon, one of the best liver surgeons in the states, solemnly told us he did not feel comfortable and that if he went ahead and tried, he would not be able to get clear margins – meaning he thought cancer cells would be left behind. Brandon would need a full blown Liver Transplant. He would have to continue with the powerful Chemo regimen, until a liver could be found, hopefully, before this aggressive cancer spreads. Currently Brandon is on the transplant list, waiting for his Gift of Life!

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Brandon after his attempted Liver Resection Surgery - Always Smiling!

Coming Soon - Part III: The Winding Road to Organ Transplant