Prayers for a little fisherman - Page 13

Hatterized · 09-27-2009, 03:50 PM

good to see some prayers for both Evan and his family are being answered.....

let his strength and recovery continue....

gottaflylee · 09-27-2009, 05:38 PM

Great news that Evan is home, continued support and prayers for him. Keep up the good fight Evan...

Nimrod · 10-05-2009, 04:14 PM

October 4, 2009 Update

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

I am happy to report that our week in NY yielded positive results. Evan had an MRI on his brain and his spine - both tests showed No Evidence of Disease. He also had a "flow study" to determine how the "Omaya port" in his skull is working. After the port was tapped and fluid injected, he was scanned 3 times over 3 days. The Omaya port is clear and ready to work!

His blood counts are also doing great! After such a long period of not having an ANC and many blood and platelet transfusions, Evan's bone marrow has kicked in and is self sufficient. His platelets have to be at 75,000 in order to have the 8H9 therapy. On Monday they were 73,000 and by Wednesday they were 97,000! That was a huge concern of ours and I am delighted to report that once again Super Evan has come through!

Evan's stomach still hurts. We had discussions with the Sloan docs about what to do about it. He was put on Protonix which is like really strong Zantac. His appetite has improved a little, but is still not normal. He is skinny and pale. He is cold all the time, I guess because of his weight loss. I wish I knew how to make his stomach feel better.

He is still napping once a day and getting about 12-13 hours sleep at night. Yesterday, he wanted to go outside for the first time in a month. He was outside for about an hour. He even rode his scooter for about 10 minutes. He was very tired when we went inside. He seems to be feeling better than he was a week ago, so he is improving slowly.

On Wednesday we go back to Sloan for the test dose of 8H9. From what we understand, it is a process much like the flow study last week, with many scans. I really hope that it is an easy visit for Evan and throughout the week, he feels stronger and stronger. I don't like to wish away the days of our lives, but I look forward to being home again next weekend.

With hope,

Wendy

Nimrod · 10-17-2009, 10:06 PM

http://www.caringbridge.org/visit/evanlindberg/journal
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Saturday, October 17, 2009 10:23 AM, EDT

Sometimes plans are merely suggestions about what is to happen in the future.

When I last updated, we were slated to go to Sloan so that Evan could get the test dose of 8H9. That plan was delayed for a week. Evan's stomach was still really bothering him early last week. We spoke with Dr. Kramer at Sloan and told her that we just didn't think Evan was ready for the next part of the protocol. We also contacted Dr. Perez at our home hospital here at Children's Hospital in DC. He ordered a bunch of blood tests and a CT scan of Evan's abdomen. The result of the CT was constipation....big time. This was a surprise to us since Evan had been "going" consistently for 2 weeks prior to the CT. Apparently, the result of 18 days of being inpatient left Evan with this lingering issue. We were so relieved that his problem was in fact temporary, even though it had been such a baffling problem for weeks. We started him on Miralax. It took another 7 days before he started to act more like himself. His appetite has really improved over the past week. We are so very excited to see him eating and his activity level increasing daily. It feels like a gift.

So, a week later than expected, we returned to Sloan on Wednesday. Evan was premedicated with various drugs and his Omaya port (in his head) was tapped and a small amount of 8H9 was injected. During our 3 day stay, Evan was scanned 3 times and his Omaya port was tapped 3 times. His hemaglobin was 7.3 so he also received a blood transfusion. His platelets are 197 which is great news for this protocol. Evan handled the week very well. He did not like to get the Omaya port tapped, but he laid still throughout every scan.

Next week we will return to Sloan for the first full dose of 8H9. Evan will be radioactive as the antibody makes its way through his central nervous system. He won't have the scans that he had this past week, but because he will be radioactive, we will have to stay at a special medical hotel. He will be "wanded" periodically to check his radioactive level and we are being encouraged not to have much physical contact with him until his levels reduce. It will be quite challenging to keep from touching him and at the same time, giving him some sort of understandable reason for why we can't. Again, this is new territory for Evan and us.

Please keep Evan in your thoughts this week as he takes on yet another challenge on his road to recovery.

With hope,

Wendy

gottaflylee · 10-18-2009, 06:28 AM

God, I hope this treatment works. Hang in there Evan, got you in my thoughts and prayers.

shiphascomein · 10-19-2009, 11:29 AM

Prayers for Evan.

Nimrod · 11-11-2009, 05:45 PM

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

We returned to Sloan, as scheduled, so Evan could get the "real dose" of 8H9. We arrived at 10:30 a.m., he was premedicated with a bunch of medications and fell asleep from the benedryl. While Evan slept, we waited...and waited....and waited for the 8H9 to be delivered to the room. At about 5:00 p.m., we were asked to go to the doctor's office to see her. We knew something was up. It turns out that the 8H9 did not meet the strict quality control guidelines that they have in place. She said in very rare cases, something doesn't bond in the process of creating it. This has nothing to do with Evan or his chemistry. Making the 8H9 compound and making sure it is worthy is a long process using iodine ordered especially for the recipient. The hospital doesn't keep the iodine in storage. It is ordered fresh each time. Because this batch was unacceptable, it meant that the day was scrapped. We woke him and told him that the medicine didn't come out right and we were going to go home in the morning. He was excited to stay in the hotel and get some dinner. We were rescheduled for the following week.

The evening before we were supposed to leave for NY for our second attempt at the real dose of 8H9, Evan told me he had a headache and his stomach hurt. Whaaaaaa??? He was acting fairly normally except that he kept mentioning his head. So, we thought we would proceed as scheduled and wake him in the morning and reassess. He slept through the night and woke up feeling fine. Phew!

The real dose was administered with no problems. It was truly weird to move our chairs back so that we were 6 feet away from Evan. It was so dangerous to be near him that we had to keep our distance, yet we just sat and witnessed the radiation being injected straight into our son's central nervous system fluid. If that scenario doesn't seem as twisted as possible, I don't know what does. We told him that we had to keep our distance from him for a few days because he just received some powerful medicine that was good for him. We said that if we touched him a lot, we would lessen the power of the medicine. He was pretty good with that. We had to remind him a few times, but all in all, it went well.

Since we have been home, Evan has been doing well. His energy is really good as is his appetite. He received an H1N1 vaccination yesterday. So many people seem to be getting the flu around here, so it is good for him to finally have some protection.

Evan had a great halloween! He was a Red Power Ranger. He had planned to be a pirate for the past month, but Sloan gave the kids their pick of costumes. He saw the Red Ranger outfit and suddenly it was like, "what pirate?".

During our time at home, Evan will get a blood draw and check up once a week. Then we will head back to NY the week before Thanksgiving for a brain and spine MRI. Hopefully soon after, he will receive the second dose of 8H9.

In the meantime, we will try to keep our hands washed, avoid the germs and have as much fun as we can.

Thank you for checking in!

With hope,

Wendy and Gavin

gottaflylee · 11-11-2009, 08:45 PM

Wendy and Gavin, First I want you to know that you both are in my prayers. I do not know how you both do this, in some respects, Evan has it easer that the 2 of you, this must tear both of you apart. I have learned a lot from you updates and when the time comes, I hope that I may be half as strong as the 2 of you...

Caveman Sportfishing · 11-11-2009, 09:10 PM

This is of course includes young Evan and a true soldier to endure what he has. This also goes for your family. Prayers from my family to yours for Evans continued improvement.

Hatterized · 11-11-2009, 09:28 PM

the will and perserverence of this little man..... the courage....that he has displayed.....

he is so deserving of a normal life......may all prayers for him and his family be answered.....

and his road to a full recovery continue.....

10-05-2009, 04:14 PM	#123
Nimrod AKA Capten Join Date: Aug 2006 Location: Germantown, MD Posts: 1,105 Credits: 6,276.2 Occupation: I sell stuff	A Good Week October 4, 2009 Update http://www.caringbridge.org/visit/evanlindberg I am happy to report that our week in NY yielded positive results. Evan had an MRI on his brain and his spine - both tests showed No Evidence of Disease. He also had a "flow study" to determine how the "Omaya port" in his skull is working. After the port was tapped and fluid injected, he was scanned 3 times over 3 days. The Omaya port is clear and ready to work! His blood counts are also doing great! After such a long period of not having an ANC and many blood and platelet transfusions, Evan's bone marrow has kicked in and is self sufficient. His platelets have to be at 75,000 in order to have the 8H9 therapy. On Monday they were 73,000 and by Wednesday they were 97,000! That was a huge concern of ours and I am delighted to report that once again Super Evan has come through! Evan's stomach still hurts. We had discussions with the Sloan docs about what to do about it. He was put on Protonix which is like really strong Zantac. His appetite has improved a little, but is still not normal. He is skinny and pale. He is cold all the time, I guess because of his weight loss. I wish I knew how to make his stomach feel better. He is still napping once a day and getting about 12-13 hours sleep at night. Yesterday, he wanted to go outside for the first time in a month. He was outside for about an hour. He even rode his scooter for about 10 minutes. He was very tired when we went inside. He seems to be feeling better than he was a week ago, so he is improving slowly. On Wednesday we go back to Sloan for the test dose of 8H9. From what we understand, it is a process much like the flow study last week, with many scans. I really hope that it is an easy visit for Evan and throughout the week, he feels stronger and stronger. I don't like to wish away the days of our lives, but I look forward to being home again next weekend. With hope, Wendy

10-17-2009, 10:06 PM	#124
Nimrod AKA Capten Join Date: Aug 2006 Location: Germantown, MD Posts: 1,105 Credits: 6,276.2 Occupation: I sell stuff	"New Territory" http://www.caringbridge.org/visit/evanlindberg/journal Saturday, October 17, 2009 10:23 AM, EDT Sometimes plans are merely suggestions about what is to happen in the future. When I last updated, we were slated to go to Sloan so that Evan could get the test dose of 8H9. That plan was delayed for a week. Evan's stomach was still really bothering him early last week. We spoke with Dr. Kramer at Sloan and told her that we just didn't think Evan was ready for the next part of the protocol. We also contacted Dr. Perez at our home hospital here at Children's Hospital in DC. He ordered a bunch of blood tests and a CT scan of Evan's abdomen. The result of the CT was constipation....big time. This was a surprise to us since Evan had been "going" consistently for 2 weeks prior to the CT. Apparently, the result of 18 days of being inpatient left Evan with this lingering issue. We were so relieved that his problem was in fact temporary, even though it had been such a baffling problem for weeks. We started him on Miralax. It took another 7 days before he started to act more like himself. His appetite has really improved over the past week. We are so very excited to see him eating and his activity level increasing daily. It feels like a gift. So, a week later than expected, we returned to Sloan on Wednesday. Evan was premedicated with various drugs and his Omaya port (in his head) was tapped and a small amount of 8H9 was injected. During our 3 day stay, Evan was scanned 3 times and his Omaya port was tapped 3 times. His hemaglobin was 7.3 so he also received a blood transfusion. His platelets are 197 which is great news for this protocol. Evan handled the week very well. He did not like to get the Omaya port tapped, but he laid still throughout every scan. Next week we will return to Sloan for the first full dose of 8H9. Evan will be radioactive as the antibody makes its way through his central nervous system. He won't have the scans that he had this past week, but because he will be radioactive, we will have to stay at a special medical hotel. He will be "wanded" periodically to check his radioactive level and we are being encouraged not to have much physical contact with him until his levels reduce. It will be quite challenging to keep from touching him and at the same time, giving him some sort of understandable reason for why we can't. Again, this is new territory for Evan and us. Please keep Evan in your thoughts this week as he takes on yet another challenge on his road to recovery. With hope, Wendy Attached Images

11-11-2009, 05:45 PM	#127
Nimrod AKA Capten Join Date: Aug 2006 Location: Germantown, MD Posts: 1,105 Credits: 6,276.2 Occupation: I sell stuff	Strong Medicine - November 4, 2009 Update http://www.caringbridge.org/visit/evanlindberg We returned to Sloan, as scheduled, so Evan could get the "real dose" of 8H9. We arrived at 10:30 a.m., he was premedicated with a bunch of medications and fell asleep from the benedryl. While Evan slept, we waited...and waited....and waited for the 8H9 to be delivered to the room. At about 5:00 p.m., we were asked to go to the doctor's office to see her. We knew something was up. It turns out that the 8H9 did not meet the strict quality control guidelines that they have in place. She said in very rare cases, something doesn't bond in the process of creating it. This has nothing to do with Evan or his chemistry. Making the 8H9 compound and making sure it is worthy is a long process using iodine ordered especially for the recipient. The hospital doesn't keep the iodine in storage. It is ordered fresh each time. Because this batch was unacceptable, it meant that the day was scrapped. We woke him and told him that the medicine didn't come out right and we were going to go home in the morning. He was excited to stay in the hotel and get some dinner. We were rescheduled for the following week. The evening before we were supposed to leave for NY for our second attempt at the real dose of 8H9, Evan told me he had a headache and his stomach hurt. Whaaaaaa??? He was acting fairly normally except that he kept mentioning his head. So, we thought we would proceed as scheduled and wake him in the morning and reassess. He slept through the night and woke up feeling fine. Phew! The real dose was administered with no problems. It was truly weird to move our chairs back so that we were 6 feet away from Evan. It was so dangerous to be near him that we had to keep our distance, yet we just sat and witnessed the radiation being injected straight into our son's central nervous system fluid. If that scenario doesn't seem as twisted as possible, I don't know what does. We told him that we had to keep our distance from him for a few days because he just received some powerful medicine that was good for him. We said that if we touched him a lot, we would lessen the power of the medicine. He was pretty good with that. We had to remind him a few times, but all in all, it went well. Since we have been home, Evan has been doing well. His energy is really good as is his appetite. He received an H1N1 vaccination yesterday. So many people seem to be getting the flu around here, so it is good for him to finally have some protection. Evan had a great halloween! He was a Red Power Ranger. He had planned to be a pirate for the past month, but Sloan gave the kids their pick of costumes. He saw the Red Ranger outfit and suddenly it was like, "what pirate?". During our time at home, Evan will get a blood draw and check up once a week. Then we will head back to NY the week before Thanksgiving for a brain and spine MRI. Hopefully soon after, he will receive the second dose of 8H9. In the meantime, we will try to keep our hands washed, avoid the germs and have as much fun as we can. Thank you for checking in! With hope, Wendy and Gavin Attached Images

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10-19-2009, 11:29 AM	#126
shiphascomein Sail boats suck Join Date: Jan 2008 Posts: 5 Credits: 1,484.9	Prayers for Evan.

11-11-2009, 09:28 PM	#130
Hatterized Crab mustard is good Join Date: Aug 2006 Location: college park, md Posts: 957 Credits: 3,115.8	the will and perserverence of this little man..... the courage....that he has displayed..... he is so deserving of a normal life......may all prayers for him and his family be answered..... and his road to a full recovery continue.....