Jeff has officially been discharged from NIH today....YEA!!!
He will have to have blood tests every Monday and Thursday as they monitor his white blood count and liver profiles. We'll be back at NIH on 3/16 for an MRI and CT scan of the liver with a subsequent clinic visit the following day. After our clinic visit on 3/17, we will know when/if Jeff will have the second procedure. They are also planning on stopping the night time IV beginning tomorrow night but then Jeff will have to get up at 2 a.m. for a snack. Dr. Drennan explained that Jeff's insulin was 19 this morning (within normal range) and it was 198 when we first arrived. They don't want to get your hopes up...but either the PHP procedure or the diazoxide is helping.....whew!!
Now we just need to work on the low grade fever, loss of appetite, and low energy levels and things will be somewhat normal again. They have checked Jeff's blood and there are no signs of infection so he either has a touch of the flu or symptoms from the chemotherapy. We will also need to follow up with our Endocrinologist at Bethesda to find out why the Lutenizing hormone is low....but things are looking good for the first time in weeks.
I will continue to update the blog but probably not more than once or twice a week. Feel free to continue to post your comments and/or questions. We have loved reading them all and thank you all for your support through these difficult times.
Monday, February 27, 2006
Sunday, February 26, 2006
February 26, 2006 ... Day 6 at NIH
Yesterday I was able to convince Jeff to go to a movie with me. Dr. Pingpank agreed that the fresh air would do us both good. Rema, Jeff's nurse quickly made sure that we had all of the supplies we needed, glucometer, tylenol, thermometer to monitor his temp, etc. Rema has been taking care of Jeff for the last three days in a row from 7:30 a.m. until 7:30 p.m. and she has been absoutely wonderful. She's paged the doctor when we had questions, changed the dressing in the pic line, and always makes sure that he was comfortable. Jeff mentioned this morning that he'd like to introduce Rema to Justin.
We used the Internet at Jeff's bedside to find the Landmark Theater in Bethesea along with directions on how to get there. It was about a 5 minute drive from NIH and to our surprise, the theater had stadium seating. It was a small theater that plays independent films tucked away on a sidestreet with 8 movie screens and a consession stand that served gourmet coffee and lattes along with the traditional fare. We saw Brokeback Mountain and were both very surprised at how good the movie was....in fact, after the movie was over, no one stood up to leave their seats. Of course, we enjoyed our date away from the hospital more than anything. It's been several months since we've actually gone out by our selves and saw a movie.
I left the hospital around 6 p.m. lastnight and got a good night's sleep in my own bed but I'm going back this morning with Brittany and Bradley in tow. I think Bradley is driving to he hospital and Brittany is driving back from the hospital as they both need to get their driving hours in. I talked to Jeff this morning and he was up eating breakfast. His last blood sugar was 130 and they decreased the amount of dextrose in his IV from 10% to 5% last night. His blood sugars yesterday before the movie (and with out the IV since 7 a.m.) was 84. Before we returned to the hospital it was 107 as the hotdog and popcorn are good foods to help keep them where they belong.
I'm trying to talk Jeff into another outing today for lunch with the kids...wish me luck. I know that we are all looking forward to getting him home on Monday and perhaps get things back to normal for a while before this all starts again.
We used the Internet at Jeff's bedside to find the Landmark Theater in Bethesea along with directions on how to get there. It was about a 5 minute drive from NIH and to our surprise, the theater had stadium seating. It was a small theater that plays independent films tucked away on a sidestreet with 8 movie screens and a consession stand that served gourmet coffee and lattes along with the traditional fare. We saw Brokeback Mountain and were both very surprised at how good the movie was....in fact, after the movie was over, no one stood up to leave their seats. Of course, we enjoyed our date away from the hospital more than anything. It's been several months since we've actually gone out by our selves and saw a movie.
I left the hospital around 6 p.m. lastnight and got a good night's sleep in my own bed but I'm going back this morning with Brittany and Bradley in tow. I think Bradley is driving to he hospital and Brittany is driving back from the hospital as they both need to get their driving hours in. I talked to Jeff this morning and he was up eating breakfast. His last blood sugar was 130 and they decreased the amount of dextrose in his IV from 10% to 5% last night. His blood sugars yesterday before the movie (and with out the IV since 7 a.m.) was 84. Before we returned to the hospital it was 107 as the hotdog and popcorn are good foods to help keep them where they belong.
I'm trying to talk Jeff into another outing today for lunch with the kids...wish me luck. I know that we are all looking forward to getting him home on Monday and perhaps get things back to normal for a while before this all starts again.
Saturday, February 25, 2006
February 25th, 2006 - Day 5 at NIH
We've made some progress...although it's slow going. The cathetar in Jeff's neck was removed yesterday and the pic line was put in his arm. He's back on the diazoxide for the hypoglycemia along with the IV of 10% Dextrose. His blood sugar ranged from 140-160 last night but they've started to drop when the IV was removed this morning. The plan is to keep Jeff off of the IV today, allow him to control his blood sugar with regular small meals, and monitor him throughout the day. They plan to put the IV back in overnight to help keep the blood sugars stabalized and better controlled for in the morning...which is when his blood sugars takes a nose dive. He was up and eathing breakfast when I got in this morning and as soon as he takes a shower and gets dressed we'll take a few laps around the building. FYI - we are not confined the room or nursing unit. The hospital is in a 10 story building with an adjacent building connected by corridors. I've tried to talk Jeff into hopping on the Metro and cruizing into D.C. for a movie but he's said he's not quite up that yet. Perhaps I can convince him to do that tomorrow when I bring the kids in. Having a weekend or day pass sounds like it's something easy to arrange.
Friday, February 24, 2006
February 24, 2006 Evening Post - Message From Jeff
Dear Friends and Families,
I can't begin to tell you my overwhelming emotions when it comes to your love and support. It's been a pretty tough week for me but I'm getting better. This journey has taken me way out of my element and I can't wait to get back to my same old self. This will take some guts and determination with some devine intervention to get through and I am confident I will. There's too many things left to and most of all I have the best wife and kids in the world that keep me going. Please share this website with all because your words of encouragement mean alot me. I love and miss all of you and remember to keep the faith! I have the best Doctors in the country and please say a prayer for them as well.
They are keeping me here until Monday in order to get my blood sugar back on track. I'm sitting here with my lovely bride eating Pappa John's pizza and wishing you all could be here to share it with me. Take care and God bless.
Love,
Jeff
I can't begin to tell you my overwhelming emotions when it comes to your love and support. It's been a pretty tough week for me but I'm getting better. This journey has taken me way out of my element and I can't wait to get back to my same old self. This will take some guts and determination with some devine intervention to get through and I am confident I will. There's too many things left to and most of all I have the best wife and kids in the world that keep me going. Please share this website with all because your words of encouragement mean alot me. I love and miss all of you and remember to keep the faith! I have the best Doctors in the country and please say a prayer for them as well.
They are keeping me here until Monday in order to get my blood sugar back on track. I'm sitting here with my lovely bride eating Pappa John's pizza and wishing you all could be here to share it with me. Take care and God bless.
Love,
Jeff
February 24, 2006 ... Day 4 at NIH... Morning Post
This morning we are just waiting around for the "pic" line to be done...Jeff's scheduled to have it done at 1:00 p.m. He's resting comfortably and we did several laps around the rather large nursing unit for exercise. As soon as the pic line is done, Jeff can take a shower and eat (yea!). It's amazing how the small things become important when you're in situations like these. So all is well today...Jeff continues to get better and will be homeward bound soon :)
I found this on the Internet while passing the time...though you might enjoy it as well:
"Just as spring's role is different from that of fall, so each of the seasons of our lives has a different emphasis, focus, and beauty... We cannot skip ahead to experience the richness of another life season more than a farmer can rush the spring."
Unknown Author
I found this on the Internet while passing the time...though you might enjoy it as well:
"Just as spring's role is different from that of fall, so each of the seasons of our lives has a different emphasis, focus, and beauty... We cannot skip ahead to experience the richness of another life season more than a farmer can rush the spring."
Unknown Author
Thursday, February 23, 2006
February 23, 2006 - Day 3 at NIH ... Evening Post
We've finally been moved to 3NW (5:30 p.m.) ...yea...that's progress.! Jeff stayed in the ICU a little longer than we expected because of his low blood sugar. It was nothing like yesterday but they had to give him the liquid syrup again (50% Dextrose) to get him back to normal. Other than feeling like "he's been hit by a Mac ... strike that... Dodge Ram Truck", he's doing pretty good. He hasn't eaten much during the day but Marie, his evening nurse, and I convinced him to have some chicken noodle soup and jello. With the aid of a sleeping agent tonight and the absence of bells and alerts from the ICU, he's hoping for a good night sleep...after American Idol of course.
Dr. Pingpank and Dr. Drennan, the surgeons who performed the procedure, stopped in before we left the ICU. They think they want to keep Jeff in the hospital until Saturday and monitor his low blood sugars a little longer. They have also asked Dr. Gordon, an Endocrinologist, to see Jeff tomorrow. As of right now the plan is to give Jeff a "pic" line so that he can have an IV during the night with 10% glucose. That seems to do the trick with keeping his blood sugar stable.
Thank you to everyone who has posted comments. Jeff really enjoyed reading them and hearing from "the outside." It's comforting to know that you're all there! Jeff sends his love and wanted everyone to know that he appreciates your support. I'm hoping that he'll take over this blog when he's feeling a little better.
Dr. Pingpank and Dr. Drennan, the surgeons who performed the procedure, stopped in before we left the ICU. They think they want to keep Jeff in the hospital until Saturday and monitor his low blood sugars a little longer. They have also asked Dr. Gordon, an Endocrinologist, to see Jeff tomorrow. As of right now the plan is to give Jeff a "pic" line so that he can have an IV during the night with 10% glucose. That seems to do the trick with keeping his blood sugar stable.
Thank you to everyone who has posted comments. Jeff really enjoyed reading them and hearing from "the outside." It's comforting to know that you're all there! Jeff sends his love and wanted everyone to know that he appreciates your support. I'm hoping that he'll take over this blog when he's feeling a little better.
February 23, 2006 - Day 3 at NIH...Morning Post
Jeff is doing much better than he was last night. The nausea is gone, the pain in his abdomen has reduced, he's sitting up and eating breakfast (toast and scambled eggs with O.J.....very good for a patient in the ICU who usually just gets liquids). Last night we watched American Idol and Jeff got in hours of the Olympics after I left.
The doctors were in early this morning and have discharged Jeff from the ICU. We are expecting to be moved back over to 3NW later this morning. Jeff's blood sugars are starting to drop a little but they are watching them closely and allowing him to control them with normal food instead of injecting him with the equivalent of liquid syrup (50% Dextrose).
The IT staff have gotten us access to the NIH wireless network for Jeff's computer and I don't think it will be long before he steals his laptop back from me :).
If all goes well today, we can expect to go home tomorrow (Yea!). Jeff and I both miss Brittany & Bradley (and the big screen) very much. Thanks to my sister Sharon (Wife #2 as Jeff lovingly refers to her), the kids have been able to keep their normal schedule and sleep in their own beds. Their cell phones have paid off this week as I was able to keep them both posted on his status via text messaging. The doctors are surprised at how "connected" we are....thank goodness for technology :)
As I mentioned in my previous posting, we won't know how effective this treatement will be for a few more weeks and unfortunately, we'll have to go through this whole process again. I'll need everyone's help convincing Jeff why he should go through this experience again.
FYI - I've changed the set up options to allow comments to be posted. Sorry for the oversight!
The doctors were in early this morning and have discharged Jeff from the ICU. We are expecting to be moved back over to 3NW later this morning. Jeff's blood sugars are starting to drop a little but they are watching them closely and allowing him to control them with normal food instead of injecting him with the equivalent of liquid syrup (50% Dextrose).
The IT staff have gotten us access to the NIH wireless network for Jeff's computer and I don't think it will be long before he steals his laptop back from me :).
If all goes well today, we can expect to go home tomorrow (Yea!). Jeff and I both miss Brittany & Bradley (and the big screen) very much. Thanks to my sister Sharon (Wife #2 as Jeff lovingly refers to her), the kids have been able to keep their normal schedule and sleep in their own beds. Their cell phones have paid off this week as I was able to keep them both posted on his status via text messaging. The doctors are surprised at how "connected" we are....thank goodness for technology :)
As I mentioned in my previous posting, we won't know how effective this treatement will be for a few more weeks and unfortunately, we'll have to go through this whole process again. I'll need everyone's help convincing Jeff why he should go through this experience again.
FYI - I've changed the set up options to allow comments to be posted. Sorry for the oversight!
Wednesday, February 22, 2006
February 22, 2005 - 1st Procedure Complete
Jeff is out of the procedure and resting semi-comfortably in the ICU at NIH. He had some nausea from the anesthesia and some pain as they were removing the catheters from his legs but they have given him some pain meds and he's feeling a little better. He should be out of the ICU and back on the Adult Oncology unit sometime tomorrow. They will be keeping a close watch on him for the rest of the night ...he's in very good hands :)
February 22,2006 ....Day 2 at NIH
Today started out a little rough....Jeff's blood sugar was at 32 when I arrived to the hospital at 6:00 a.m. They increased his IV to 10% Dextrose to see if that helped but by 6:30 a.m. his blood sugar was 27...he was sweating, confused and had double vision. They were able to give him 50% glucose in his IV and that helped bring him back around.
Dr. Pingpank and his fellow, Dr. Drennan, were in this morning. Jeff has signed his consent to participate in the study and have the procedure done today. We had a very long discussion with Dr. Pingpank last night and learned that the primary concern right now is the liver because there are so many tumors. They also believe that the tumors on the liver are also producing/secreting uncontrolled insulin just like the tumors in the pancreas but because there are so many of them it is reeking havic on Jeff's blood sugar. If left untreated, the liver could eventually fail but it is important to know that his liver function tests are still in the normal range right now (good news). This procedure should help with the tumors on the liver and then they can focus on the pancreas.
Last night we also learned that there are very few options for the liver tumors right now, and this is the primary treatment. If this doesn't work, they may refer us to the Pittsburg for a "microsphere" chemo treatment. Dr. Pingpank explained that through the procedure we are having today, they can give higher doses of chemo than if treated the normal way (meds or IV) and that this method does less damage to the rest of the body because of how they filter out the toxins in the blood during the procedure.
They do not expect to Jeff to have any nasea or hair loss from the chemo, however, he will spend some time in the ICU after his procedure. Mainly because of the catheters they will be putting into the veins in his legs and neck. He should be moved back to the 3NW (Adult Oncology) unit tomorrow and discharged on Friday if all goes well.
Dr. Pingpank expects to give today's treatment and then have Jeff back for follow up tests and a second procedure in four weeks. He said that we could expect to have four treatments and that two of the patients that they have treated with neuroendocine tumors (but not insulinoma) have had complete response from this treatment. That's encouraging news!
To date, Dr. Pingpank has treated over 50 patients with this new method and already proven chemo agent and given between 150-200 of these types of treatment with promising results.
The staff here at NIH have been absolutely wonderful. I did not realize what a large healthcare facility this was and how important their research studies were. Yesterday the Social Worker arranged for me to stay at the at the Safar Lodge while Jeff is hospitalized and it's on campus and is within walking distance of the hospital (literally across the street). There is a cafe in the lobby that serves latte's (not Starbucks but close enough) as well as a cafeteria that is open from 6:30 a.m. to 7:30 p.m. Jeff has a tv and computer with the Internet and he's already logged into work for a few minutes.
Well folks...Jeff should be going downstairs for his procedure soon. I'll add another post as soon as he's out of the procedure and comfortable in the ICU. Please keep us in your prayers!
Dr. Pingpank and his fellow, Dr. Drennan, were in this morning. Jeff has signed his consent to participate in the study and have the procedure done today. We had a very long discussion with Dr. Pingpank last night and learned that the primary concern right now is the liver because there are so many tumors. They also believe that the tumors on the liver are also producing/secreting uncontrolled insulin just like the tumors in the pancreas but because there are so many of them it is reeking havic on Jeff's blood sugar. If left untreated, the liver could eventually fail but it is important to know that his liver function tests are still in the normal range right now (good news). This procedure should help with the tumors on the liver and then they can focus on the pancreas.
Last night we also learned that there are very few options for the liver tumors right now, and this is the primary treatment. If this doesn't work, they may refer us to the Pittsburg for a "microsphere" chemo treatment. Dr. Pingpank explained that through the procedure we are having today, they can give higher doses of chemo than if treated the normal way (meds or IV) and that this method does less damage to the rest of the body because of how they filter out the toxins in the blood during the procedure.
They do not expect to Jeff to have any nasea or hair loss from the chemo, however, he will spend some time in the ICU after his procedure. Mainly because of the catheters they will be putting into the veins in his legs and neck. He should be moved back to the 3NW (Adult Oncology) unit tomorrow and discharged on Friday if all goes well.
Dr. Pingpank expects to give today's treatment and then have Jeff back for follow up tests and a second procedure in four weeks. He said that we could expect to have four treatments and that two of the patients that they have treated with neuroendocine tumors (but not insulinoma) have had complete response from this treatment. That's encouraging news!
To date, Dr. Pingpank has treated over 50 patients with this new method and already proven chemo agent and given between 150-200 of these types of treatment with promising results.
The staff here at NIH have been absolutely wonderful. I did not realize what a large healthcare facility this was and how important their research studies were. Yesterday the Social Worker arranged for me to stay at the at the Safar Lodge while Jeff is hospitalized and it's on campus and is within walking distance of the hospital (literally across the street). There is a cafe in the lobby that serves latte's (not Starbucks but close enough) as well as a cafeteria that is open from 6:30 a.m. to 7:30 p.m. Jeff has a tv and computer with the Internet and he's already logged into work for a few minutes.
Well folks...Jeff should be going downstairs for his procedure soon. I'll add another post as soon as he's out of the procedure and comfortable in the ICU. Please keep us in your prayers!
Tuesday, February 21, 2006
February 21, 2006....Day 1 at NIH
Today Jeff was admitted to the National Institutes of Health in Bethesda Maryland for his screening protocol...basically to see if he's healthy enought to participate in a clinical trial (Percutaneous Heptac Perfusion or PHP). If all goes well today, the doctors here will do a procedure tomorrow to inject a chemotherapy agent directly into his liver and filter the blood before putting it back into his body. This helps target the liver metestasis and keep the toxins from the chemo out of his body. He can expect to be admitted to the ICU after the procedure and sent home on Friday.
If all goes well, the chemotherapy will reduce the liver tumors enough for surgeons to remove the tumors in the pancreas later on. It may take a couple of these treatments before they will consider surgery for the primary tumors.
If all goes well, the chemotherapy will reduce the liver tumors enough for surgeons to remove the tumors in the pancreas later on. It may take a couple of these treatments before they will consider surgery for the primary tumors.
How the Journey Began
Nine months ago...everything was normal....Jeff retired from the Navy, finished his Bachelor's Degree (Magna Cum Laud), and landed a great job at Anteon. Little did we know that everything would be turned upside down in just a few short months.
The 2005 camping season ended and Jeff began to feel fatigued. He started having some minor pains in his right side around the Thanksgiving and Christmas Holiday but nothing that caused too much concern. He also started having symptoms of hypoglycemia (low blood sugar). When the pain returned and the fatigue got worse in mid-January, he went to the St. Mary's Hospital ER. They didn't find anything abnormal and referred him to his primary care physician (PCP).
In mid-January 2006, during the follow up visit with Dr. Bhavsar, Jeff's PCP, he was given a glucometer to monitor his blood sugar and the doctor ordered an ultrasound of the liver. The results showed several lesions on his liver and therefore, a CT of the abdoman was ordered.
It was this CT that showed a very poor picture....a 3 centimeter tumor in the head of the pancreas and metastistic lesions covering 50% of his liver. We quickly got a referral to Bethesda Naval Hospital for additional testing.
It was early February when Jeff spent a week at the Bethesda Naval Hospital. He was in great hands there as his testing was overseen by Dr. Kurland, a gastroenterologist, a team of internal medicine and endocrinology physicians and residents, and Dr. Dorrance, our new onologist. They diagnosed Jeff with a two malignant insulinoma tumors (only one showed on the CT) .....a very rare insulin producing tumor. So rare in fact that only 1 in 4 million people per year develop this type of tumor and of those, only 10% are malignant (cancerous)....like Jeff's.
Our oncologist quickly began looking for clinical trials and referred us to the National Institues of Health in Bethesda, Maryland, for follow up and possible participation in a study. Unfortunately for us, there are not a lot of case studies for patients with this type of cancer and traditional treatements (chemotherapy, radition, etc.) have not been very effective. However, the good news is that this type of tumor is usually slow growing and not as aggressive as the "bad" type of pancreatic cancer. Of course, the term "bad" is relative and has a whole new meaning for us.
We monitor Jeff's blood sugar regularly now and have had a few episodes that scared us. We have all learned to watch for the symptoms (confusion, trembling, etc.) and make sure he eats every 2-3 hours to keep his blood sugar from getting low. Despite taking medication and eating regularly, he's still having problems keeping his blood sugar at an optimal level (80-100).
Thus begins Jeff's journey to see what treatment options are available.
Our friends, family and co-workers have been so awsome through all of this and are to be commended for their continued support. We feel truely blessed to have such a wonderful support system and are most thankful for everyone who has placed Jeff and the family on their prayer chain at church. Please keep us in your prayers as this may be a long journey....
The 2005 camping season ended and Jeff began to feel fatigued. He started having some minor pains in his right side around the Thanksgiving and Christmas Holiday but nothing that caused too much concern. He also started having symptoms of hypoglycemia (low blood sugar). When the pain returned and the fatigue got worse in mid-January, he went to the St. Mary's Hospital ER. They didn't find anything abnormal and referred him to his primary care physician (PCP).
In mid-January 2006, during the follow up visit with Dr. Bhavsar, Jeff's PCP, he was given a glucometer to monitor his blood sugar and the doctor ordered an ultrasound of the liver. The results showed several lesions on his liver and therefore, a CT of the abdoman was ordered.
It was this CT that showed a very poor picture....a 3 centimeter tumor in the head of the pancreas and metastistic lesions covering 50% of his liver. We quickly got a referral to Bethesda Naval Hospital for additional testing.
It was early February when Jeff spent a week at the Bethesda Naval Hospital. He was in great hands there as his testing was overseen by Dr. Kurland, a gastroenterologist, a team of internal medicine and endocrinology physicians and residents, and Dr. Dorrance, our new onologist. They diagnosed Jeff with a two malignant insulinoma tumors (only one showed on the CT) .....a very rare insulin producing tumor. So rare in fact that only 1 in 4 million people per year develop this type of tumor and of those, only 10% are malignant (cancerous)....like Jeff's.
Our oncologist quickly began looking for clinical trials and referred us to the National Institues of Health in Bethesda, Maryland, for follow up and possible participation in a study. Unfortunately for us, there are not a lot of case studies for patients with this type of cancer and traditional treatements (chemotherapy, radition, etc.) have not been very effective. However, the good news is that this type of tumor is usually slow growing and not as aggressive as the "bad" type of pancreatic cancer. Of course, the term "bad" is relative and has a whole new meaning for us.
We monitor Jeff's blood sugar regularly now and have had a few episodes that scared us. We have all learned to watch for the symptoms (confusion, trembling, etc.) and make sure he eats every 2-3 hours to keep his blood sugar from getting low. Despite taking medication and eating regularly, he's still having problems keeping his blood sugar at an optimal level (80-100).
Thus begins Jeff's journey to see what treatment options are available.
Our friends, family and co-workers have been so awsome through all of this and are to be commended for their continued support. We feel truely blessed to have such a wonderful support system and are most thankful for everyone who has placed Jeff and the family on their prayer chain at church. Please keep us in your prayers as this may be a long journey....
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