Prayers for a little fisherman

[austin ensor]

prayers will be sent for this young fishermen.

[clt_capt]

Great news. Evan is definitely a winner - Just stepping on the ball field!!!

[BarryTurano]

Our thoughts and prayers go out to Evan.
I am sorry for not reading all of the posts on this thread. It is somewhat difficult. Due to the fact that we know
first hand what his family is going through. One of our grandchildren Chase was diagnosed with a "Juvenile Pilocytic Astro Cytoma" at the age of 2 years 9 months he has had 4 surgeries and 13 months of Chemo Therapy. They were able to remove 70% of the tumor the balance remains between the optic nerve and the Pituitary Gland. He has lost sight in his right eye but that does not prevent him from being an active little boy (he was 5 in January) he has started fishing with his older brother Danny who is 7 and "pop" (me). All we can do is not give up hope and pray for a cure. Like Evan, Chase's is also an "orphan disease" There are not that many cases for the drug companies to fund research. That is why it is so important for donations. To Evan and his family PLEASE do not give up hope PLEASE!

[Nimrod]

Received some bad news from Evan's mother through one of the neighbors. It seems that doctors have found more cancer during one of his check ups at Sloan:

"Sent: Wednesday, June 24, 2009 10:02 PM
Subject: say some prayers

I heard from Wendy tonight who is up in NYC getting Evan's routine scans. They found a spot they think may be in Evan's skull. They were suppose to come home today but now will stay to see if they can get the additional tests done up at Sloan. C-scan and bone marrow biopsies to identify exactly what is going on. As you can imagine, she sounded broken on the phone, but in typical Wendy fashion has not given up hope.

Please say a prayer that it ends up being nothing."


"Sent: Friday, June 26, 2009 10:16:45 AM
Subject: Re: say some prayers

Heard from Wendy for only a minute this morning. It's definitely cancer. Just not sure if the spot is on his skull or in the area between his skull and his brain. If it is the latter that means a central nervous system relapse. She was interrupted with another call and had to go so that's all I know and I'm not sure what it all means. They're trying to get home today if they can meet with the Drs. in this morning."


The good news is Evan is feeling well and is in good spirits. His parents and doctors are assessing this recent hurdle and formulating a plan. This kid and his family are fighters. Please keep them in your prayers. I will update as we learn more.

[chumslicker27]

Prayers for Evan and the family...

[gottaflylee]

Oh God, I pray that this has a good out come. This kills me to hear this...Evan, you and your family be strong and you all are in my prayers...
Paul, thanks for keeping us updated...

[Avenger]

This thread always hits me particularly hard because I have a four year-old named Evan. I can't imagine how these people deal with this. We'll continue to keep him and his family in our prayers.

[Nimrod]

Friday, July 3, 2009 4:26 PM, CDT

http://www.caringbridge.org/visit/evanlindberg

I am heartbroken to report that Evan has relapsed again. We were in NY on June 23rd and 24th for scheduled scans. While in a cab on the way to the train station to return home on the afternoon of the 24th we got word from Sloan-Kettering that Evan's MIBG scan showed a new spot of disease in the "dura" (lining of the brain). The cab turned around and headed back to the Ronald McDonald House - a horrible ride. The next day Evan had a head CT and bone marrow biospies. Hats off to the neuroblastoma team at Sloan for scheduling these so quickly.

The final results of all tests confirm a 2.5 centimeter lesion on the dura about 2 inches above his left ear. No bone involvement at all. Turns out our little hero Evan is about as rare they come. Not only does he have this terrible disease that strikes just a few hundred children a year AND is "N-myc" amplified (a genetic marker indicating poor prognosis that is present in less than 30% of patients), this type of relapse is alwost unheard of. In more than 25 years of practice Sloan (who far and away treats more neuroblastoma patients that any other institution in the world) has seen just 2 other children with a single relapse spot that is completely in the dura. The key question quickly became should this be considered and treated as a "Central Nervous System" relapse? If the lesion were in the brain or in the spinal canal there would be no question. However, the dura is the lining of the brain so intense discussion among the 4 neuroblastoma doctors at Sloan ensued. We are blessed to have all of these clincians/researchers putting their heads together to come up with a plan for our son. The discussion was important because the plan changed over the course of several days.

The final conclusion is that the likelihood of neuroblastomacells having crossed over into the brain and spinal fluid is significant and therefore we should treat this as a CNS relapse. The good news is that Sloan-Kettering is the only institution in the world with a protocol to treat CNS relapses. Moreover it has been quite successful, with over 70% of the kids not only clearing their disease but remaining disease free. The numbers are small (only about 20 patients have entered the protocol) but we are leaning on these stories of success as we entered this new phase of the fight. This past week was a whirlwind.

We returned home with the bad news from NY on Friday, June 26th. Over the next few days, Gavin reached out to the many people in the neuroblastoma world
he knows (researchers, clinicians, parents) to discuss our situation. Many thanks to all of them! On Tuesday, June 30thwe got the official call from Sloan telling us that their recommendation was to treat this as a CNS relapse. On Wednesday, we drove to Philadelphia to meet with our wonderful neuroblastoma expert at Children's Hospital of Philadelphia. After that meeting, we continued up I-95 to NY as we were able to get a surgical consult with the neurosurgeon at Sloan for the next day (Thursday, July 2nd). On Thursday morning, our physicians at Sloan and CHOP spoke over the phone about Evan. Thursday afternoon, we made the decision to move forward with Sloan's recommendation, then met with the neurosurgeon, then met with Dr. Kramer (neuroblastoma Doc. at Sloan who runs the CNS relapse protocal) then packed the car and headed for home at 6:00pm. We arrived home at 12:30am Friday morning.

The road ahead is long. Here is a snapshot of what is in Evan's future over the course of 5 - 6 months....
-Surgery to remove the lesion and placement of an "Omaya Port" in Evan's skull to enable delivery of a radioactivated monoclonal antibody (8H9) to the CNS.
-Radiation to the entire brain and spine.-Additional targeted radiation to the relapse spot.
-High-Dose chemotherapy-Infusions of the 8H9 antibodyAfter that, we will then return to low dose chemotherapy, accutane, and painful 3F8 antibody treatments.
The whole treatment protocol could easily last a year and poses significant risks of complications for Evan down the road. We will feel extremely blessed if we are addressing those when Evan is in high-school. We need your prayers now more than ever. The fact that this is Evan's second relapse makes it harder to predict how he will fair. We will also be re-activating our fund raising activities for "Evan's Fund."

On a positive note, Evan is looking and feeling great. His blood counts are in a good place and his energy level good. Thankfully, this tumor is entirely asymptomatic. We hope it stays that way as we count down the days until it is removed. The neurosurgeon said as far as brain surgery goes, this should be relatively straightforward. About 4 hours and one to four days of recovery.

We are eternally grateful to our good friends for offering help and support throughout our battle. We couldn't do it without you.

We will let you know how it goes.
With Hope -Wendy

T-Ball!


Neighborhood 4th of July Parade

[clt_capt]

Stay strong Evan - It is great to see the T-Ball game.

[biebs]

prayers going up. I know what his family is going through and I all can say is that it changes everyones life involved. I ve got a good feeling that he's gonna pull through on this. Seems like he has a great support staff, and that is the key.