Prayers for a little fisherman

[Nimrod]

ROCK ON EVAN!!

FRIDAY, FEBRUARY 27, 2009 02:35 PM, CST

Hello Everyone - we apologize for the length of time between updates.

First off, Evan is doing well. A lot has happened in the last 7 weeks - so we''ll pick-up were we left off........ It took only 4 days of 3F8 antibody therapy in December for Evan to become "HAMA Positive" again. In early January, we learned that his HAMA number is much higher than the first time he HAMA'd back in the summer of '07. Being HAMA positive means the 3F8 antibody is useless against neuroblastoma because Evan's immune system has developed an antibody to it (HAMA stands for "Human Antibody to Mouse Antibody"). There is no telling how long it might take for his HAMA level return to negative (many months is a fair estimate). After receiving this news, our friends at Sloan-Kettering recommended putting Evan on the oral drug Accutane and retesting his HAMA level periodically. We weren't comfortable with that because Evan relapsed while on Accutane in September of '07.

Consequently, we have been researching other therapies for relapsed kids who have "No-Evidence of Disease" (for those of you who don't know, Evan cannot continue receiving the chemotherapy regime (irinotecan/temador) he got all last year because additional rounds would create an unnacceptable risk of secondary leukemia). First, we considered putting Evan on Rapamyacin/Vinblastine, a new combination that has shown promise in a handful of children in the U.S. and Canada. However, we then became interested in the experimental drug ABT-751 . Dr. John Maris at Children's Hospital of Philadelphia (CHOP) is an expert on this therapy. We had a very good meeting with him in early February in Philly and he considered Evan a good candidate for the drug. Most kids who receive ABT-751 have detectable/refractory neuroblastoma and are enrolled in a clinical trial. However, a growing number of kids like Evan have been able to receive the drug via a "compassionate use" arrangement in recognition of the fact that they are not eligible for the trial (because they don't have evidence of disease) and they have few other options to stave off the disease. In order to begin treatment via compassionate use we had to have an MIBG scan to confirm once again his NED status. We went up to Sloan-Kettering for that test two weeks ago. As every neuroblastoma family knows "MIBG Day" is the most nerve racking- terrifying experience you can imagine. You hold your breath until the doctor gives you the news. Thank God Evan's scan was clear. Evan then had an echocardiogram to test his heart function. No one has to tell us what a great heart Evan has. We should all have his courage and bravery. The echo confirmed this as well.

So, we returned to Philly on Wednesday of this week on Amtrak (which Evan loves). He had blood drawn and got a urine test and then took his first dose of ABT-751. It comes in a pill or liquid form. After 15 minutes of trying every coersion we could think of to get him to take the pill, we asked for the liquid form. We are so glad they have that option! So that is how we will administer it from now on.

He will get monitored very closely at D.C. Children's to see how his body reacts to the drug. He'll have weekly blood tests and physicals at first. Every 2 months he will get an MIBG scan and echocardiogram (which we will still do in NY) . The most common side effects are fatigue and constipation. He can take ABT-751 for up to three years. A cycle is 7 days on the drug and 14 days off.

Evan is enjoying kindergarten this year, but over the past 2 weeks, his class has experienced almost every type of common 5/6 year old ailment possible! I have kept him out of school since the day after president's day to try and keep him healthy as he embarked on this new therapy. Last weekend he had a fever and developed a pretty bad cold. The fever was shortlived thankfully, and he was, of course, able to start treatment. Today is day 3 of his first 7 day course of ABT-751. I didn't send him to school today because his class has been so sick, he is still getting over his cold and I would like to see how ABT is afftecting him. It is 12:30 p.m. and Evan is napping. This is a VERY rare occurance for him. Yesterday he was grumpy and wired...today he is sleeping.

We pray that this drug will be a successful one for Evan. Sloan-Kettering is still working on the humanized version of 3F8 and is pleased with the progress they are making. Humanized 3F8 doesn't have the HAMA factor to worry about. It is good to know that Sloan-Kettering, as well as other hospitals, are working on new things to try to combat this awful beast. So many kids we know are struggling every day and many are losing the battle. A cure CANNOT come soon enough.

We are thankful for your continued prayers and support. It means everything to us.

With hope,
Wendy & Gavin

[knot for shore]

All my continued best to the little guy and his battle. My thoughts are also with you and your wife. I can not begin to imagine what the day to day emotions are like for you guys. You are very strong people for sure. I take this kind of stuff to heart because it's so serious. No child deserves or should have to endure this or any other health related problem.

Well said fish.....

[gottaflylee]

Nimrod, thanks for the update. Each time I see you update, I get a lump in my throat as I worry that it may not be good news. Glad once again that Evan is doing well and will keep he on my thoughts and prayers...rock on Evan, rock on.

[34SILVERTON]

This note is about an unfortunate situation that my neighbor and good friends are enduring. Their son, Evan, is gravely ill and needs our prayers and help.

Please take a moment to read the information below. My hope is that one day soon Evan will be healthy enough to fish with his little friend/my son as well as with his father on his boss' boat 'Heatwave' out of Edgewater, MD and Wachapreague, VA.

This Thanksgiving be thankful for your health and the health of your loved ones.

Paul Hannum

PLEASE SUPPORT "EVAN'S FUND"

Three year-old Evan Lindberg is fighting for his life. In September 2006, he was diagnosed with stage IV neuroblastoma, a rare and aggressive pediatric cancer that had spread throughout his body. Only about 325 children a year are stricken with this late-stage disease in the U.S. Evan's total medical expenses are likely to reach $1 million; his family's responsibility will likely run into the hundreds of thousands of dollars. Please consider making a donation to Evan's Fund so that his family can pay for the treatment that may save his life. Donations can be made to:

Evan's Fund
c/o Health and Medicine Counsel of Washington
507 Capitol Court NE, Suite 200
Washington, DC 20007

Evan's Fund was established by Gavin's employer with an initial donation of $25,000 so that Wendy and Gavin can make treatment decisions based on that is best for Evan. Friends of the Lindberg family are administering the fund. Although tax laws do not allow donations to be tax deductible, anyone wishing to review the account expenditures is welcome to do so.

EVAN'S STORY

During Labor Day weekend, Evan began complaining that his leg hurt. Wendy and Gavin assumed he had pulled a muscle or had growing pains. After a few days of repeated complaints from Evan, who rarely complains about anything, they took him to the pediatrician. The doctor performed an x-ray that revealed nothing abnormal. The pain continued throughout the week (despite regular doses of Tylenol), but then seemed to go away.

A week later the pain was back and worse than ever. Evan was unable to run and walked with a severe limp. At times he cried due to the pain. The family went back to the pediatrician once again. The doctor took blood from Evan, put him on Tylenol 3 and told The Lindbergs to come back the next day. The following afternoon the pediatrician recommended a CT-scan which revealed a mass in Evan's abdomen. The Lindbergs were instructed to admit Evan to Children's National Medical Center in Washington , DC that night. Within 24 hours of the CT-scan, a preliminary diagnosis of neuroblastoma was made. The next day, Evan underwent major surgery to remove the primary cancerous tumor from his abdomen. Further diagnostic tests revealed that the cancer had spread to his legs, spine, arms and other areas. Evan then began what would be the first of many lengthy rounds of chemotherapy. Since his diagnosis and surgery, Evan has continued to be treated at Children's National Medical Center in Washington , DC . He has spent the majority of his days and nights in the hospital. Unfortunately, Evan has lost a lot of weight and has recently been placed on a daily nutritional infusion regimen. He no longer looks like the happy little boy in the picture - instead, he looks like he is fighting for his life.

THE ROAD AHEAD

Wendy and Gavin have decided that Evan's best chance for survival is a unique monoclonal antibody treatment performed exclusively at Memorial Sloan-Kettering Cancer Center in New York . Done in conjunction with chemotherapy, the antibody (3F8) is designed to specifically target and eliminate the neuroblastoma cells.

The antibody therapy is supported by a clinical trial through the National Cancer Institute and is FDA approved only for patients at Sloan-Kettering. In addition to the antibody regime, continued chemotherapy and radiation treatments, Evan may require more surgery to rid his body of the cancer. Needless to say, Gavin and Wendy are prepared to do whatever it takes to get Evan the treatment he requires, but they need our help.

Please consider giving to Evan's Fund so his family can afford the treatment he needs.

* For more information about Evan's Fund contact Chris Healey at
cphealey@verizon.net.


* For more information about neuroblastoma see:
http://www.cancerindex.org/ccw/guide2n.htm

http://www.mskcc.org/mskcc/html/2868.cfm

http://www.stjude.org/disease-summar...7_2978,00.html

http://www.acor.org/ped-onc/diseases/neuro.html

http://www.cancer.gov/cancer_informa...neuroblastoma/

On behalf of the Lindberg family, thank you for considering a donation to Evan's Fund.

prayers sent. good luck

[Nimrod]

Evan continues to do well and enjoys doing the things that little boys do. We look forward to attending his t-ball games this season and having him join the new 'Fishing Club' that his friend Jack (my son) is putting together for friends in the area and at school.

***A SPECIAL NOTE TO JOE L. HERE ON SFC***
Joe: I am not sure of your screen name but I wanted to mention to you that your comments in Evan's CaringBridge Guestbook mean so much to him and his parents. Thank you for taking the time to follow his story and let them know that you are thinking of them.

EVAN & JOE....YOU GUYS ROCK!!


Here is the latest update on Evan by his mom Wendy from his CaringBridge page. http://www.caringbridge.org/visit/evanlindberg


Last week, we went to Sloan for an MIBG scan for Evan. Per the protocol for the new drug Evan is on (ABT-751), he has to get an MIBG scan and an echocardiogram every 2 months. Good news! No evidence of disease on the MIBG! Yes!!!!! And the echocardiogram was good as well. We learned that Evan has a small hole in his heart. It was the path through which my blood passed through to his heart in utero. Most of the time it heals up but in 15% of the population it doesn't. The cardiologist said that if Evan decides to deep sea dive or to travel into space, he would need to get it repaired. We will cross that bridge when we come to it.

We received a call from Sloan on Wednesday, the day before we were supposed to go there. They asked if Evan had a test for RSV that proved he was negative. As you will recall, Evan was in the hospital for 8 days in December with RSV. He hadn't been retested. So, we had to stay away from the pediatric day hospital (the 9th floor at Sloan) because a test takes 3-5 days.

That made this trip a little different from the rest. No playroom, no seeing the familiar faces that Evan is used to seeing. But, the good news was that we were only there for 2 days and the result was as good as it gets!

Evan is playing t-ball this year for the first time. It is shear pleasure to watch him out there with the other kids, learning, running, throwing and doing all the things that kids do. Gavin is the assistant coach. We were a little nervous about Evan playing t-ball with a port in his chest (where meds can be administered and blood can be drawn). I fashioned a port guard for him out of an arm protector. It provides some protection and he doesn't seem too bothered by it. His first real game is on April 18th. We are excited!

This week we will go to Philadelphia for Evan's 3rd round of ABT-751. This treatment is so different from the antibody treatment that Evan was receiving at Sloan. He takes it orally for 7 days with no pain involved. He gets fatigued and we are always on the lookout for constipation problems, but they are the toughest side effects that he has experienced from ABT-751. Compare that to the antibody treatment; 5 days of daily infusion, extreme pain, narcotics and uncomfortable nights. It is quite a change of pace. We are thankful for a gentler treatment and pray that it is working.

Thank you for your positive thoughts, prayers and support. It is so important.

With hope,

Wendy

[34SILVERTON]

Prayers sent, please get well little guy.

prayers sent

[gottaflylee]

Wo-wo, this is great news, you go Evan, your go...
Nimrod, thank you for keeping us updated on Evan, I am so glad that his health keeps improveing...keeping Evan in my prayers...

[clt_capt]

The strength and heart of kids like Evan is truly amazing.

Please keep the updates coming.

[Nimrod]

From Evan's CaringBridge Journal:
http://www.caringbridge.org/visit/evanlindberg


We went to Childrens Hospital of Philadelphia as planned to get Evan evaluated and begin his 3rd round of ABT-751. The day before we were scheduled to go, Evan came down with a fever. I took him to the hospital in DC where he received infused antibiotics. (Because he has the central line in his chest, he has to receive antibiotics and get tested for any kind of line infection every time he pops a fever.) The next day he did not have a fever and we went to Philly for his appointment. They gave him his second dose of antibiotics. Fortunately, it was the start of a nasty cold, not a line infection.

Dr. Maris at CHOP told us that Evan can stop having weekly check ups and blood draws and that they would send the ABT-751 to us for the next 12 weeks. After that period of time, will go back to CHOP for evaluation. Prior to each round, Evan will be evaluated by the doctors here and have his blood counts checked. Just before we go back to CHOP a few months from now, we will go to Sloan for Evan's MIBG scan.

Evan started his T-Ball season last weekend. He is going around telling everyone that his team won 4-2. The reality is that every kid gets up to bat each of 2 or 3 innings and everybody scores. If Evan considers himself a winner, far be in from me to correct him.

Unfortunately, I don't have a picture of the ballplayer himself because I managed to lose my camera last weekend. I will rectify the situation as soon as I can.

The mother and great aunt of a little girl fighting neuroblastoma are planning a great fundraising event for the Band of Parents. It is called "Paddling for a Cure". These ladies will paddle a raft the entire length of the Grand Canyon over a 2 week period. Please check out this link to learn more and please consider donating even a little to a great cause.
www.firstgiving.com/paddlingforacure

With hope,
Wendy

[gottaflylee]

Nimrod, thanks so much for the update, I am so glad that Evan is doing so well. I will contune to keep him and his family in my thoughts and prayers...