Our cruise and our trip to NIH
Our cruise to Cozumel was both great and disappointing. The weather was cold, cloudy and rough waters on Sunday. Friday we woke up to very overcast skies and cool weather. We were prepared of 80s and I think it was somewhere in the 50s. The wind made it seem cold. The kids did get to swim some, but we did not sit by the pool all day as we had hoped. We enjoyed our dinner each evening. We were at two different tables because there were so many of us. On formal night the kids decided to go to the Camp Carnival and that let us all sit together and enjoy a fairly quiet dinner. (No dinner is quiet with Brianna - she can and does scream rather loudly when not fed fast enough to her liking!) Hogan also ate with us because he was running a fever. We got some great pictures of mom and us girls on formal night as well. Each family also got a family photo. Jana and I surprised Brad and Steve with pictures of ourselves! Emily did show up in Jana's pictures though:-)
The beach was great. We got up early and took the kids first thing in the morning. We caught a taxi to the private beach and were the first ones there. It was probably 1 and1/2 hours before the bus arrived dumping others onto the beach. The kids ran up and down the beach laughing and making lots of noise until everyone else came. They swam in the ocean and the pool! Mom got a 1 hour massage on the beach! They had a buffet lunch as well. The weather was cool but nice and the kids swam a long time before complaining of being cold. We were all able to sit in the sun and relax and play with the kids. The disappointing part was the ocean was too rough to put the water trampoline and climbing iceberg out. I don't think the kids missed it though. They had a great time.
On Sunday coming home the ocean was very rough. Many people were sea sick. We were all a little queasy but okay. Mom had a rough time though. She had trouble staying awake to eat and began hallucinating. We were very concerned, but we gave her meclizine and put her to bed. She slept all afternoon and when the ship finally quit rocking and she woke up, she was better. The waiter at our table had been sailing for over a year and never experienced such rough waters!
We spent most of our time eating and talking. It was really relaxing, even though we seemed to stay fairly busy. It was really nice not to have to cook, clean or work. We just got to visit and pay attention to mom. Sometimes I think I am so busy at home that I don't visit with her enough.
So, we got in on Monday and Tuesday afternoon we took a flight to Maryland. We had a good flight and made it to our hotel fairly easily. The only glitch was that we were sneaky and took the other hotel's shuttle to avoid a cab fair. The driver took us right inside and placed our luggage right in front of the counter! I was horrified. The others with us checked in and we went to the restroom! The lady that was helping us got our luggage and met us in the lobby. She walked around and they asked if they could help us. She said she was looking for the restroom! We went right back in after her! She then stood at the door and kept peeking out to see if the driver was still standing there! She said this is like being in a spy movie! I was dying. I told her I would just go ask how much their rooms were and say I wanted to check next door (where we already had reservations) She said no, just wait. And since she had our suitcase, I waited! Finally, the driver walked off and she shot out of the restroom and down the hall, with mom and I in hot pursuit. She the walked us next door in the rain to help me with the luggage and mom. She was very sweet, but it was quit funny too. I think she was enjoying the cat and mouse game. I was so embarrassed. (I never could get away with anything, even as a kid!)
This morning we took the right shuttle to the National Institute of Health. We had to go through security again (went through last night just to catch the connecting (improper) van to the hotel). They check your ID, send everything through airport style scanners and you through a metal detector. They then got to the van and rub the steering wheel with a wand looking for traces of explosives! (At night big concrete barriers come up out of the ground with gates and cables to close the gates!) Very high security for a hospital!
We then found our way to the admissions to check in through an interview. Then they sent us to the 12th floor where we check into the clinic. The nurse interviewed us and then took us to see two nurse practitioners and finally Dr. Fine. Everyone was so nice and on time! We were in a room waiting for Dr. Fine to come in 15 minutes prior to our scheduled time and he came in!!!! He was very informative. He did not recommend surgery, because the part of the tumor that will cause to most problem is in the most sensitive area and not able to be remove. It sits in the corpus callosum. He said it would not benefit her that much and might cause more deficits. He said we could get BCNU or carboplatin at home and come in for check ups/scans every month, but if we wanted to be more aggressive, then he would but her in clinical trials if she passed the eligibility requirement, which is to not have hemorrhaging in the tumor. The problems are we have only been off Temodar for 1 week and we have to be off for 4 weeks. So we have to wait 3 more weeks before we can get a scan to determine if there is hemorrhaging in the brain. Next, is that he was very concerned about her. He thinks she has an infection somewhere and is running some tests. (She has declined rapidly in the last week) He said they would call us with the lab results today and tell us if we should go home tomorow for follow up there or if we needed to go to the ER here. I was a little surprised that he thought she might need immediate medical attention. I think we have assumed we were watching tumor progression. I almost hope there is infection so we can treat and get improvement.
If we join the clinical trial I want her to be in, then we would have to come to NIH every 2 weeks for IV Avastain and scans every other visit. He said that out of 80 patients on Avastain in his care almost everyone of them has improved and some very dramatically! He said they would give her the first infusion and then do a scan in a day or so and could tell us that soon if she was responding to the drug. If not then, we would move to another study.
The second option for clinical trials was 2 drugs combined. He gave us a brief outline for these because he is hoping to qualify for the Avastain. These drugs would be pill and IV. We would give the pill at home and come every 4 weeks for IV and scans. So this would make traveling a lot easier.
We have a lot to discuss, but the hopes of clinical improvement are definitely weighing heavily on our minds. There was no mention of double blind studies or anything. We would get what we are coming to get! Pray that God will give us wisdom in our decisions and there would be not bleeding in the brain if that is the drug she needs to take. Also more immediately, that we would get good blood results and be able to come home and be treated at home.
Our cruise to Cozumel was both great and disappointing. The weather was cold, cloudy and rough waters on Sunday. Friday we woke up to very overcast skies and cool weather. We were prepared of 80s and I think it was somewhere in the 50s. The wind made it seem cold. The kids did get to swim some, but we did not sit by the pool all day as we had hoped. We enjoyed our dinner each evening. We were at two different tables because there were so many of us. On formal night the kids decided to go to the Camp Carnival and that let us all sit together and enjoy a fairly quiet dinner. (No dinner is quiet with Brianna - she can and does scream rather loudly when not fed fast enough to her liking!) Hogan also ate with us because he was running a fever. We got some great pictures of mom and us girls on formal night as well. Each family also got a family photo. Jana and I surprised Brad and Steve with pictures of ourselves! Emily did show up in Jana's pictures though:-)
The beach was great. We got up early and took the kids first thing in the morning. We caught a taxi to the private beach and were the first ones there. It was probably 1 and1/2 hours before the bus arrived dumping others onto the beach. The kids ran up and down the beach laughing and making lots of noise until everyone else came. They swam in the ocean and the pool! Mom got a 1 hour massage on the beach! They had a buffet lunch as well. The weather was cool but nice and the kids swam a long time before complaining of being cold. We were all able to sit in the sun and relax and play with the kids. The disappointing part was the ocean was too rough to put the water trampoline and climbing iceberg out. I don't think the kids missed it though. They had a great time.
On Sunday coming home the ocean was very rough. Many people were sea sick. We were all a little queasy but okay. Mom had a rough time though. She had trouble staying awake to eat and began hallucinating. We were very concerned, but we gave her meclizine and put her to bed. She slept all afternoon and when the ship finally quit rocking and she woke up, she was better. The waiter at our table had been sailing for over a year and never experienced such rough waters!
We spent most of our time eating and talking. It was really relaxing, even though we seemed to stay fairly busy. It was really nice not to have to cook, clean or work. We just got to visit and pay attention to mom. Sometimes I think I am so busy at home that I don't visit with her enough.
So, we got in on Monday and Tuesday afternoon we took a flight to Maryland. We had a good flight and made it to our hotel fairly easily. The only glitch was that we were sneaky and took the other hotel's shuttle to avoid a cab fair. The driver took us right inside and placed our luggage right in front of the counter! I was horrified. The others with us checked in and we went to the restroom! The lady that was helping us got our luggage and met us in the lobby. She walked around and they asked if they could help us. She said she was looking for the restroom! We went right back in after her! She then stood at the door and kept peeking out to see if the driver was still standing there! She said this is like being in a spy movie! I was dying. I told her I would just go ask how much their rooms were and say I wanted to check next door (where we already had reservations) She said no, just wait. And since she had our suitcase, I waited! Finally, the driver walked off and she shot out of the restroom and down the hall, with mom and I in hot pursuit. She the walked us next door in the rain to help me with the luggage and mom. She was very sweet, but it was quit funny too. I think she was enjoying the cat and mouse game. I was so embarrassed. (I never could get away with anything, even as a kid!)
This morning we took the right shuttle to the National Institute of Health. We had to go through security again (went through last night just to catch the connecting (improper) van to the hotel). They check your ID, send everything through airport style scanners and you through a metal detector. They then got to the van and rub the steering wheel with a wand looking for traces of explosives! (At night big concrete barriers come up out of the ground with gates and cables to close the gates!) Very high security for a hospital!
We then found our way to the admissions to check in through an interview. Then they sent us to the 12th floor where we check into the clinic. The nurse interviewed us and then took us to see two nurse practitioners and finally Dr. Fine. Everyone was so nice and on time! We were in a room waiting for Dr. Fine to come in 15 minutes prior to our scheduled time and he came in!!!! He was very informative. He did not recommend surgery, because the part of the tumor that will cause to most problem is in the most sensitive area and not able to be remove. It sits in the corpus callosum. He said it would not benefit her that much and might cause more deficits. He said we could get BCNU or carboplatin at home and come in for check ups/scans every month, but if we wanted to be more aggressive, then he would but her in clinical trials if she passed the eligibility requirement, which is to not have hemorrhaging in the tumor. The problems are we have only been off Temodar for 1 week and we have to be off for 4 weeks. So we have to wait 3 more weeks before we can get a scan to determine if there is hemorrhaging in the brain. Next, is that he was very concerned about her. He thinks she has an infection somewhere and is running some tests. (She has declined rapidly in the last week) He said they would call us with the lab results today and tell us if we should go home tomorow for follow up there or if we needed to go to the ER here. I was a little surprised that he thought she might need immediate medical attention. I think we have assumed we were watching tumor progression. I almost hope there is infection so we can treat and get improvement.
If we join the clinical trial I want her to be in, then we would have to come to NIH every 2 weeks for IV Avastain and scans every other visit. He said that out of 80 patients on Avastain in his care almost everyone of them has improved and some very dramatically! He said they would give her the first infusion and then do a scan in a day or so and could tell us that soon if she was responding to the drug. If not then, we would move to another study.
The second option for clinical trials was 2 drugs combined. He gave us a brief outline for these because he is hoping to qualify for the Avastain. These drugs would be pill and IV. We would give the pill at home and come every 4 weeks for IV and scans. So this would make traveling a lot easier.
We have a lot to discuss, but the hopes of clinical improvement are definitely weighing heavily on our minds. There was no mention of double blind studies or anything. We would get what we are coming to get! Pray that God will give us wisdom in our decisions and there would be not bleeding in the brain if that is the drug she needs to take. Also more immediately, that we would get good blood results and be able to come home and be treated at home.
posted by Angie at 2:50 PM
2 Comments:
Oh, Angie -- I am so sorry things are so rough right now! I haven't been on here for a month due to being so darn busy myself and was disheartened to find that things are declining.
I am praying hard for all of you. I know God has his reasons for everything so I pray that whatever is to come, you will all be taken care of.... please remember I am just right down the road if you need ANYTHING -- and I truly mean that.
On a brighter note, Kaylen is doing very well. The tests she has gotten so far have come back normal and the doctors are encouraged in thinking it was a one time thing.
And CONGRATULATIONS to you! I know a baby right now was probably the last thing you were thinking about (I can only imagine!), but maybe this is a big blessing in a little package.
Love you all and praying all the time...
Diane
Thanks Diane. I am so glad to hear about Kaylen. I can't imagine how relieved you must be. I know you will probably be on pins and needles for years each time she gets the slightest cold (that's what we mom's tend to do).
We are hopeful with the new possibility of the clinical trials, and maybe that is the whole reason we are searching so hard. Not having hope is a killer. This will not be a cure but it could buy us more time with mom and maybe in a better state!
Thanks for your prayers!
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