Evan keeps up the good fight and is a joy to be around. My son took him fishing down at the docks a few weekends ago and they had a ball (I'll post up some photos in another thread).
For several hours one rainy November afternoon, Evan Lindberg sleeps.
The 4-year-old, a talkative, friendly, sandy-haired boy, is exhausted, no doubt a side effect of the cancer treatments he has been receiving for more than a year. Evan has stage-four neuroblastoma, an aggressive cancer that forms in immature nerve cells and is diagnosed in about 650 children every year, according to the National Cancer Institute, which is part of the National Institutes of Health in Bethesda. Only 30 percent of those diagnosed survive.
For the past year, Evan’s parents Gavin and Wendy Lindberg, have shuttled him between Memorial Sloan-Kettering Cancer Center in New York City and treatment at the outpatient facility for Children’s National Medical Center in Rockville. They are members of Band of Parents, a nonprofit devoted to raising money to advance treatments for neuroblastoma.
But in the living room of his Germantown home, Evan is a regular boy who loves all things with wheels, who zips around the living room with the speed of Lightning McQueen, the popular racecar from the movie ‘‘Cars.” A boy who says, ‘‘A cheetah runs really fast. Almost as fast as me.”
The Lindbergs knew there was something wrong with their son when he wouldn’t run anymore.
In September 2006, Evan’s leg hurt so much that ‘‘he didn’t want to stand or walk,” Gavin said.
A CAT scan on Sept. 19, 2006, found a tumor in his abdomen. The cancer had spread to his bones and bone marrow. That night, he was admitted to Children’s hospital Washington. Surgery followed on Sept. 22 and Evan started high-dose chemotherapy Sept. 25.
‘‘The disease in Evan was everywhere,” his father said.
In January, Wendy and Gavin took their only child to Sloan-Kettering where, one week a month for six months, Evan received antibody therapy invented by a doctor at the Manhattan hospital.
During the treatments, Evan was found to have NED or no evidence of disease, Gavin said.
The Lindbergs say that the antibody, 3F8, which is derived from mice and only available at Sloan-Kettering, is the best chance for a cure to neuroblastoma. The antibody attaches to the surface of the neuroblastoma cells which signals the immune system to attack the tumor cell and kill it, according to Sloan-Kettering’s Web site.
The Lindbergs, and about 100 other families with children who have neuroblastoma, formed Band of Parents, a nonprofit dedicated to expanding 3F8 research.
‘‘We’re throwing our energy and our passion into this Band of Parents because we feel if we can raise money needed to do this, then Evan has a fighting chance,” said Gavin, who is the group’s president.
Their fight got more demanding when, in August, after six months of the antibody treatment, Evan developed a resistance to 3F8. He could no longer be treated with the antibody.
Then, in mid-September, Evan started to complain that his hip hurt whenever he sat down and at night.
He had relapsed. Evan had 20 radiation treatments over 10 days
.
‘‘Technically, as we sit here, there is no cure for relapsed neuroblastoma,” Gavin said.
A humanized form of 3F8 could help — children might not develop a resistance.
‘‘I’m convinced that 3F8 works, and if Evan could continue to receive it, he would, but he can’t,” Gavin said.
So Band of Parents is working to raise the $3 million they estimate is needed to research and humanize the antibody. They want to find a biotech to partner with Sloan-Kettering.
The nonprofit also gives these families an outlet, said Bethesda resident Donna Morris, whose son, Zachary, 6, has also developed a resistance to 3F8.
‘‘It’s hard to focus. It’s really hard to focus, because we’re in treatments, we’re in hospitals,” Morris said in a telephone interview. ‘‘But I need to focus and it helps me to feel like I’m helping my son and all these other children.”
All of the families in Band of Parents know each other through Sloan-Kettering and some met at the nearby Ronald McDonald house. Some have children with no evidence of disease, others have lost their children to neuroblastoma.
‘‘It’s just amazing,” Morris said. ‘‘People have put forth so much effort.”
Evan, who spent that rainy November morning at Epworth Preschool in Gaithersburg and the afternoon at the outpatient center, is groggy when he wakes up.
‘‘Every day I tell him he’s my hero,” Gavin said. ‘‘But he doesn’t know why, and that’s good.”
After some juice and granola bar, Evan dances around the coffee table. His favorite song is on in the background.
Evan is running again.
‘‘I could just stand here all day and watch him,” Wendy said. ‘‘It’s not just, ‘Oh, he’s running, ho-hum.’ It’s elation and thankfulness really.”
Band together
For more information about Band of Parents, visit www.bandofparents.org. The group’s cookie fundraiser ends Dec. 15. Also visit its auction at www.charityfolks.com and click on ‘‘Auctions” and ‘‘Band of Parents Foundation.” Items for bid include four tickets to The David Letterman Show with a backstage tour by Paul Shaffer, dinner for two in Las Angeles with actor Eugene Levy and tickets to Oprah.
Last edited by Nimrod; 12-05-2007 at 05:39 PM.
Reason: add photo from the article
Evan - aka Superman - keeps up the fight and amazes us with his strength. Our thoughts are with him this week as he endures another 5 days of chemo. The news was promising from NY last week as the recent test results look good. Here is the latest update form his mother Wendy.
PHEW! Today, we returned home from a full work-up at Sloan over the past 3 days. As many of you know, we were quite nervous about the tests because Evan has been complaining regularly about discomfort in his hip. The preliminary results are really good. Dr. Kushner told us that the relapse spot in his right hip is almost completely gone. He said that is a very good response to therapy. In addition, there is no new disease so we are relieved and elated. We will enjoy a very thankful and happy Christmas. There is no way we could be any more proud of Evan for his bravery and enduring positive spirit throughout all of his treatment. He is our superman. Evan will start round 4 of post-relapse chemo the day after Christmas.
More good news, Dr. Cheung, head of the neuroblastoma research team at Sloan, sent Gavin, in his capacity as president of "Band of Parents", some encouraging information regarding the advancement of the antibody humanization project. These were his words:
I want to share some good news regarding the 3F8 initiative. We have obtained a commitment from a biotechnology company that provides both mission and experience to develop the 3F8 mouse antibody program. With their expertise and input, I expect the 3F8 chimerization and 3F8 humanization to rapidly move forward. This development is a direct result of the inspiration provided by all of the families and children across the nation in our care. We thank you for your passion, determination, and energizing efforts that uniquely helped to accelerate this initiative and make this possible.
You have collectively and literally moved "mountains" and have given many something to be thankful for over the holidays. As we bring in the year 2008, your "magic" has only just begun. Please share this note with all who have helped bring us to this step. I will be providing a more detailed update in an evening meeting planned for January 24, 2008.
On behalf of all of us at MSKCC, I wish you all a peaceful and loving holiday season.
Band of Parents is enjoying tremendous success in fundraising efforts thanks to a great cookie drive (we sold out!), a charity auction and many local fundraising efforts. During the past week, we received a high six-figure contribution from an incredibly generous donor. Words cannot describe our gratitude for this gift of hope. That brings our total Band of Parents fundraising effort to $1.2 million! Not bad for a six month old organization. We are well on our way to meeting our goal of raising $3.5 million. Our sincerest thanks to all who have donated. Please visit www.bandofparents.org to help spread the word about upcoming fundraising events in the new year.
Our prayers are with our fellow fighters who have had a more challenging week than we had. Zach, Gus, Eden and Sydney are just some of the kids who need your positive thoughts and prayers. This disease is relentless.
We truly hope that you have a fantastic holiday with your family and friends, and enjoy every moment.
I thought some of you might like an update on Evan's condition. His friends and family are greatful for all of the continued thoughts and prayers.
Evan continues to emerge from this terrible thing we call cancer healthier and stronger. It is always great to see him and talk about all the things little boys love. My son Jack had a great time at Evan's recent birthday party at the firehouse and we all hope to do a little fishing in the weeks to come.
Since the last update, some major events happened to Evan. We celebrated Evan's 5th birthday. What a blessing!. He was feeling good and full of energy. We had his party at a firestation. They had 2 fire calls while we were there. Perfect!
Evan also graduated from preschool. What a fantastic year at school it was for him! The director of the school and Evan's two teachers were outstanding! He had so many nice kids with whom he went to school. We couldn't have asked for more. Next year he will be at the same school since it has a kindergarten program as well.
Evan had his regularly scheduled, 90 day scans in NY last week. We are slowly getting the results of each test. All results show no evidence of disease!!!! I feel like writing that sentence over and over again! The only test result we are waiting for is the urine test.
Evan did so well through each test. He drinks his contrast for the CT so much easier than he used to and lays so still for each scan, without sedation, except of course the bone marrow biopsies. I know I have said it before but he is amazing. We always try to make our trip to NYC a good time for Evan. This time we went to Time Square and visited the M&M store, Hershey store, Toys R Us and the NHL store. Very fun!
Evan has completed 11 rounds of post relapse chemo. His doctor says that at 20 rounds they usually stop this combination of chemo because one of the two types of agents he gets is suspected to cause secondary diseases like leukemia. We are hopeful that the vaccine that Sloan-Kettering is working on will be ready soon and that Evan remains eligible for it. It is unproven and untested, but Sloan has high hopes for it's validity.
We are litterally thankful everyday that Evan wakes up and hits the ground running. Thank you for your prayers and positive thoughts for Evan's health and strength.
My mother's 5 year battle with ovarian cancer rages on. It has been very difficult for her lately, but her spirit is strong. She is in a rehabilitation facility to reclaim her physical strength. Her doctors are hoping that she will be back at home within a month. Please send your prayers to her as well.
Please visit the Band of Parents website at www.bandofparents.org and check out the Band of Parents logo items available for purchase as well as our newest fundraiser, "Get Etched", where you can have your favorite photograph lasered onto granite for a very nice keepsake. You can find more info by clicking on "shop online and support band of parents" on the band of parents website.
happiness at the end of the rainbow......thanks for sharing this young man courageous battle with us.....all at some point in their lives may be dealt with such a hand..whether it be personally, family member, loved one, co-worker, or friend.....and let his little guy be a lesson...dont give up hope....life is to precious
It's been almost 2 years since his diagnosis and Evan continues to be successful in his battle against Neuroblastoma and the simple day to day challenges of being a little boy. It is great to see him out and about with the other neighborhood kids and to know that he, like my son, will be starting kindergarten next week. They grow up fast and knowing the struggles that kids like Evan have had to endure make each moment with them that much more precious.
Here is a recent update from Evan's blog:
THURSDAY, AUGUST 14, 2008 09:53 PM, CDT
We heard from Evan's doctor at Sloan-Kettering a few weeks ago regarding the direction of his treatment. After setting our sites on the pending vaccine for so long, they have decided to focus on getting Evan more antibody therapy instead. The basis for the change is that there is no guarantee when the vaccine is coming out or if it will be successful for Evan, so they are concentrating on the antibody therapy that has far more data to apply to Evan's case. If he is able to get the antibody treatment for a few rounds, it would at least give him a break from chemo.
Last week, we traveled to NY to get a day's infusion of a drug called Rituximab. This drug is supposed to aid in reducing his HAMA (the reason why he is not on antibody treatment now). Next week we have to travel back to NY for another Rituximab infusion along with a chemo agent this time. Rituximab has only been used on 6 other kids with neuroblastoma at Sloan. It takes about 6 months to work. Some kids have gotten serious reactions to it, not only during infusion but up to 13 days after. Guess what day 14 is? The next Rituximab infusion. Knock on wood, so far so good for Evan. He got ONE hive today (which scared me) but it disappeared within a few minutes. Whew!
Meanwhile, this is a regular chemo week for Evan. Round 13 of post-relapse chemo to be more specific. If that weren't enough time spent with the medical community we also managed to squeeze in a dentist appointment and his 5 yr old physical exam at the "plain old" pediatrician today. He has no cavities, and is in the 75th percentile for height and weight, but he failed his hearing test. Unfortunately, it is not uncommon for kids with neuroblastoma to develop some hearing loss. We have to see a specialist and he may end up with hearing aides. We are disappointed, but not shocked.
Evan starts school during the last week in August. Kindergarten, here he comes! He is full of energy and on the go. Talk about a blessing. He fights through occassional fatigue like a true superhero. He doesn't understand, of course, why he is inexplicably tired, he just rests briefly and is back up again. It is pure joy to watch him do things like run, ride is bike and hit a baseball. These things give me hope.
Thank you for praying for Evan and sending positive thoughts.
I can see it's dangerous for you, but if the government trusts me, maybe you could.
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Amazing
I wasn't around when this thread started...but I just sat here for the last 30 minutes alternating between goosebumps and tears as I read his journey through this terrible illness...I know I speak for all on SF.com when I say that there is no greater fear for a parent than to have a ill child and felling totally helpless to cure or comfort. Evan embodies every quality we each should aspire to!!! I too pray that God answer's all our prayers and allows this child to continue on his path to recovery. This kid's a fighter and our world sure could use a few more like him!! God speed Evan...you and your family are in my thoughts and prayers!!!
It's hard for us to understand it all but thanks for being strong and showing the rest of us how it's done gracefully and with compassion. Your one of the reasons we try to give also! Will check out a cpl angels and see if they can help watch things. my family.
he is the true meaning of miracle child... he is so strong it is unbelievable.. to be so young and take on such a problem in life and step on it like an ant is a great thing.. this young man is not only an inspiration to young kids everywhere but also to adults!!! with a little bit of strengh and drive you can make it thru anything...
i pray for evan all the time in hopes he comes thru all of this 100 percent... he is a truly special child as well as the others who face the same day to day problems around the clock...
there has always been some stuff going on but if they ever need anything nimrod let us know and we can pull together as a community and get a big donation together or have a get together in honor of such a strong individual!!!
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Summer 2008 Update - Good Stuff!
Kindergarten Here He Comes!
