Tuesday, July 24, 2007
I Spoke A Little Too Soon...
Apparently, the data is there, but most of our pictures cannot be read (something about fragmentation that I do not comprehend). We tried to look at them tonight on our computer and less than a third were viewable. The Datasafe guy did say that more of them might be viewable on Adobe, but our new hard drive doesn't have that so we have to wait until tomorrow when Brad brings home his laptop. I am not holding my breath. Is it wrong to grieve for pictures? Are my children going to be scarred because I have no pictures of their childhood? (I am not asking this is in jest...I am completely serious.) I feel like a huge failure as a mom. I am the person who is in charge of holding their memories. I am the one who will remember all the things that aren't important to anyone else. How can I do that if I have no pictures to show their children? Let's not even begin to consider what will happen if the cancer does win. I hate when things are completely out of your control. It's even more painful to know that I could have prevented this, but I didn't because I was lazy. I'd love to say that I was a procrastinator or something like that, but in reality, I was just lazy. It wouldn't have taken that long. So, BACK UP YOUR PICTURES! RIGHT NOW!
Tuesday, July 24, 2007
Happy Day!
We just heard from the DataSafe company that was working on saving all of our files (mostly our pictures) off the hard drive that crashed...everything is there! I am so thankful. The man I talked to said there were CD's of info, so I'm sure I will have a lot of "stuff" to go through. Let this be a lesson to you all...back up your pictures. I know it takes some time that you could be folding laundry or playing the 1000th game of SpiderMan Memory with your child, but do it anyway. You'll feel so good about yourself.
Sunday, July 22, 2007
I Survived!
Brad went backpacking this weekend with some guys from our Sunday School Class. He left really early on Friday morning and should be home around six tonight. I stayed at home all by myself with my two children. I tried to get my mom to come and stay with us, but for some strange reason she decided to go on her only vacation of the summer. Sometimes people can be so selfish! :) Some you might be thinking, "SO?", but you should know that I have never done that before and I was pretty trepidatious. We survived, though. On top of that, I was early to church this morning. I always had a feeling that it was Brad who slowed up our Sunday morning routine and it turned out I was right! I didn't plan on doing anything this weekend and that is pretty much what we did. It was kind of nice to not have any expectations for yourself and then feel very satisfied when you meet them all.
In other news, our computer is still dead. I say dead because Friday a week ago, it crashed. I wish there was some way to make a word look like an onomatopoeia sounds. If there was, you would see a small mushroom cloud where the word "crashed" was. It was horrible. I am still making myself not freak out about the fact that all of my pictures from the time Eli was born to the present were on that hard drive. I have never backed them up. NEVER. We gave the computer to a friend of ours who was going to try to save the data. It didn't work so now we have given it to a company called DataSafe. Hopefully, (and I mean I have really prayed about this...several times) the company will be able to salvage all the pictures. Feel free to join me in this prayer. In this case I wish I was like my friend, Stephanie. She would never have let all her pictures go un-backed up all this time. She would have had a schedule and all of her precious pictures would be protected. Unfortunately, I am just me.
And the really big news of the week...Phoebe has FINALLY started rolling over. I was getting a little worried that she never would. I think she might be lazy. The child really likes to be held...all the time. She has no interest in learning how to sit up using her arms as support, or roll over, or lift her head up when she does roll over. She is way too laid back for all that work. I'll try to post some pictures soon, but it will take our regular computer (as opposed to Brad's laptop) getting a new hard drive from Dell on Monday. Just know that both of my children are pretty darn cute!
In other news, our computer is still dead. I say dead because Friday a week ago, it crashed. I wish there was some way to make a word look like an onomatopoeia sounds. If there was, you would see a small mushroom cloud where the word "crashed" was. It was horrible. I am still making myself not freak out about the fact that all of my pictures from the time Eli was born to the present were on that hard drive. I have never backed them up. NEVER. We gave the computer to a friend of ours who was going to try to save the data. It didn't work so now we have given it to a company called DataSafe. Hopefully, (and I mean I have really prayed about this...several times) the company will be able to salvage all the pictures. Feel free to join me in this prayer. In this case I wish I was like my friend, Stephanie. She would never have let all her pictures go un-backed up all this time. She would have had a schedule and all of her precious pictures would be protected. Unfortunately, I am just me.
And the really big news of the week...Phoebe has FINALLY started rolling over. I was getting a little worried that she never would. I think she might be lazy. The child really likes to be held...all the time. She has no interest in learning how to sit up using her arms as support, or roll over, or lift her head up when she does roll over. She is way too laid back for all that work. I'll try to post some pictures soon, but it will take our regular computer (as opposed to Brad's laptop) getting a new hard drive from Dell on Monday. Just know that both of my children are pretty darn cute!
Saturday, July 21, 2007
Monday, July 16, 2007
Now what?
Brad here.
Sorry for the delay in posting since we arrived home from New England. We drove back into town on Tuesday evening. Then our home computer quickly proceeded to crash. So, we have been dealing with all of the issues that this has caused.
Today we went to church and many asked how our trip went. We talked a lot about our trip and as a result we have been reflecting quite a bit on it. We realize our last two blog entries were not very thorough but essentially the bare bones facts. We have to admit, this detail wasn't lost on us. In fact, though not intentional I think we wanted to keep the information on this "fact level" and not let you in to our minds or hearts. Why? Well, for one I think we are conflicted. We want to be optimistic and we want our friends to treat us normally so that things "feel normal" too. Second, if we keep our fears and inner thoughts to ourselves then we in some weird way can continue to deny that we have them. Of course, it is these inner thoughts that we dwell on and that overwhelm us. Third, we have no idea how many people are reading this blog so it is partially a "trust" issue. Finally, we don't want to admit that although we are people of "faith", we are afraid of what the future holds.
What does the future hold? Well, we of course don't know. We like all of you have no idea. However, we do know that Jordan has cancer. This is now her third bout of it. Her cancer first appeared when she was 11, came back when she was 21, and is present now. We knew that it was always possible that it would come back. In fact, we were preparing ourselves for it to come back some time soon. So, in some odd way the fact that Jordan has cancer again now isn't much of a surprise. However, expecting something to happen doesn't make the happening any less traumatic when it does happen. Anyhow, back to my point. Yes, overall we had a "good" doctors visit in Boston...but this is relative. Relative to the fact that we don't have any more answers now than when we went. Relative to the fact that we learned that the tumor in Jordan's caudate (sp) lobe of her liver is sandwiched between her portal vein and the vena cave and the surgeons "think" they could remove it but would have to balance the morbidity/mortality risks with the advantages of removal. Relative to the fact that we learned while in Boston that Jordan has one more lesion on her liver than we knew we had making five total (3 in the liver, 1 in her spleen, and something in her lung.). Relative to the fact that the doctors think the tumors haven't shrunk since March but rather only appear as they have since her July scans were done without any other tumors bleeding in her abdomen. Finally, relative to the fact that the surgeons agree that the only way to alleviate the risk of another tumor exploding like happened in March is to conduct the surgery the surgeons "think" they could perform and Jordan live through it.
So, as you can see, despite the news that doctors want us to just keep living our lives while taking Gleevec at our current dosage and see where we are in three more months, we have a lot of worries as we know we are not by any means out-of-the proverbial woods yet. Yes, "living your life" sure beats "there is nothing we can do for you" or "you need immediate surgery", but this is easier said than done. Yet, we are trying. We really are trying. So, for those of you who ask how we are doing and show concern we say thank you. We apologize however for the times when we say things are "fine" and give you less than you deserve.
Please pray for peace of mind. Pray that we can "live our life" without dwelling on all the things that could go wrong. Pray that God continues to give Jordan good health so we can enjoy this season of life and that Gleevec works well enough that no surgery is ever necessary. Finally, pray that this burden is once and for all lifted from us.
Sorry for the delay in posting since we arrived home from New England. We drove back into town on Tuesday evening. Then our home computer quickly proceeded to crash. So, we have been dealing with all of the issues that this has caused.
Today we went to church and many asked how our trip went. We talked a lot about our trip and as a result we have been reflecting quite a bit on it. We realize our last two blog entries were not very thorough but essentially the bare bones facts. We have to admit, this detail wasn't lost on us. In fact, though not intentional I think we wanted to keep the information on this "fact level" and not let you in to our minds or hearts. Why? Well, for one I think we are conflicted. We want to be optimistic and we want our friends to treat us normally so that things "feel normal" too. Second, if we keep our fears and inner thoughts to ourselves then we in some weird way can continue to deny that we have them. Of course, it is these inner thoughts that we dwell on and that overwhelm us. Third, we have no idea how many people are reading this blog so it is partially a "trust" issue. Finally, we don't want to admit that although we are people of "faith", we are afraid of what the future holds.
What does the future hold? Well, we of course don't know. We like all of you have no idea. However, we do know that Jordan has cancer. This is now her third bout of it. Her cancer first appeared when she was 11, came back when she was 21, and is present now. We knew that it was always possible that it would come back. In fact, we were preparing ourselves for it to come back some time soon. So, in some odd way the fact that Jordan has cancer again now isn't much of a surprise. However, expecting something to happen doesn't make the happening any less traumatic when it does happen. Anyhow, back to my point. Yes, overall we had a "good" doctors visit in Boston...but this is relative. Relative to the fact that we don't have any more answers now than when we went. Relative to the fact that we learned that the tumor in Jordan's caudate (sp) lobe of her liver is sandwiched between her portal vein and the vena cave and the surgeons "think" they could remove it but would have to balance the morbidity/mortality risks with the advantages of removal. Relative to the fact that we learned while in Boston that Jordan has one more lesion on her liver than we knew we had making five total (3 in the liver, 1 in her spleen, and something in her lung.). Relative to the fact that the doctors think the tumors haven't shrunk since March but rather only appear as they have since her July scans were done without any other tumors bleeding in her abdomen. Finally, relative to the fact that the surgeons agree that the only way to alleviate the risk of another tumor exploding like happened in March is to conduct the surgery the surgeons "think" they could perform and Jordan live through it.
So, as you can see, despite the news that doctors want us to just keep living our lives while taking Gleevec at our current dosage and see where we are in three more months, we have a lot of worries as we know we are not by any means out-of-the proverbial woods yet. Yes, "living your life" sure beats "there is nothing we can do for you" or "you need immediate surgery", but this is easier said than done. Yet, we are trying. We really are trying. So, for those of you who ask how we are doing and show concern we say thank you. We apologize however for the times when we say things are "fine" and give you less than you deserve.
Please pray for peace of mind. Pray that we can "live our life" without dwelling on all the things that could go wrong. Pray that God continues to give Jordan good health so we can enjoy this season of life and that Gleevec works well enough that no surgery is ever necessary. Finally, pray that this burden is once and for all lifted from us.
Tuesday, July 10, 2007
And The Doctor Said...
Now that you have "The Five Little Monkeys" rhyme running through your head, here is what the oncologist said today. First of all, it was VERY encouraging. The short story is that I will continue taking Gleevec for the next three months at the same dosage and then do a CT scan and MRI in September. This will give them a clearer picture of what is going on and if the Gleevec is working (and "working" includes the tumors staying the same size because it indicates that they are not growing). We may not know for another six months to a year if the Gleevec is working or if surgery is necessary. At this rate, I will just continue to live my life, take the Gleevec and do scans to see what is going on. The long story to all of this is way too detailed (and way too boring) to go into on this blog...and we are not even sure if we understand it all. I'll try to continue the saga when I feel like we've processed it all and understand it a little better.
Personally, I know that this is all an answer to prayer. We have been prayed for by so many people and I know that it is working. Keep it up! :)
I apologize for the "shortness" of this blog. (Brad would say "brevity", but I'm not Brad.) It will take us a few days to figure all of this out and then we'll update further. We fly home tomorrow to get Eli and Phoebe and then we'll probably drive home to Amarillo on Thursday. Keep checking for fun pictures of our trip!
Personally, I know that this is all an answer to prayer. We have been prayed for by so many people and I know that it is working. Keep it up! :)
I apologize for the "shortness" of this blog. (Brad would say "brevity", but I'm not Brad.) It will take us a few days to figure all of this out and then we'll update further. We fly home tomorrow to get Eli and Phoebe and then we'll probably drive home to Amarillo on Thursday. Keep checking for fun pictures of our trip!
Monday, July 09, 2007
Here is what we learned today
Brad here.
Our visit with Dr. Raut just completed. We wanted to pass on what we learned ASAP. So, before leaving this doctor's office with free Internet we write this post.
Dr. Raut was an impressive person. My overall impression is that he "knows" his stuff. I also got the since that he was "happy" to have someone like Jordan walk into his office (someone who had pediatric onset of GIST).
Alright, enough with the descriptives and now on to the facts. The primary thing we learned today is that if surgery is ever going to occur...it will occur in a few months (3 or so). The reason I say this is Dr. Raut said that he and the many other physicians all over the world who are working on GIST have all agreed that if someone who has a GIST isn't responding to either Gleevec or Sutent (the second line therapy for those who failed gleevec), then surgery would actually exacerbate the problem further and tumors would re-occur faster. Therefore, surgery is only recommended if the medicinal theraphy is working (i.e., the tumors are not growing or they are shrinking).
So, Dr. Raut stated that he would study Jordan's films and compare them against one another this evening and he will be talking with the oncologist we meet with tomorrow. He believes at first glance that the tumor near Jordan's vena cava in her liver indeed has shrunk in size but he wants to study them further. If so, then he said we would continue to take Gleevec for about three more months, have another scan, and if the tumors have shrunk or are the same then do surgery.
So, overall we have hope! This is what we wanting and needing and the fact that the CT scans indicate Jordan's tumor(s) were shrinking (per Drs. Smith and Johnson in Amarillo), we may just have received the best news possible. So, we are cautiously optimistic at this point. So, time to go eat sea food at one of our favorite restaurants -- Legal Sea Food.
Our specific prayer requests would be these: that the tumors respond well to Gleevec, that surgery would be a viable option in the future, and that the tumors do not rupture and start to bleed and require an emergency surgery.
Our visit with Dr. Raut just completed. We wanted to pass on what we learned ASAP. So, before leaving this doctor's office with free Internet we write this post.
Dr. Raut was an impressive person. My overall impression is that he "knows" his stuff. I also got the since that he was "happy" to have someone like Jordan walk into his office (someone who had pediatric onset of GIST).
Alright, enough with the descriptives and now on to the facts. The primary thing we learned today is that if surgery is ever going to occur...it will occur in a few months (3 or so). The reason I say this is Dr. Raut said that he and the many other physicians all over the world who are working on GIST have all agreed that if someone who has a GIST isn't responding to either Gleevec or Sutent (the second line therapy for those who failed gleevec), then surgery would actually exacerbate the problem further and tumors would re-occur faster. Therefore, surgery is only recommended if the medicinal theraphy is working (i.e., the tumors are not growing or they are shrinking).
So, Dr. Raut stated that he would study Jordan's films and compare them against one another this evening and he will be talking with the oncologist we meet with tomorrow. He believes at first glance that the tumor near Jordan's vena cava in her liver indeed has shrunk in size but he wants to study them further. If so, then he said we would continue to take Gleevec for about three more months, have another scan, and if the tumors have shrunk or are the same then do surgery.
So, overall we have hope! This is what we wanting and needing and the fact that the CT scans indicate Jordan's tumor(s) were shrinking (per Drs. Smith and Johnson in Amarillo), we may just have received the best news possible. So, we are cautiously optimistic at this point. So, time to go eat sea food at one of our favorite restaurants -- Legal Sea Food.
Our specific prayer requests would be these: that the tumors respond well to Gleevec, that surgery would be a viable option in the future, and that the tumors do not rupture and start to bleed and require an emergency surgery.
Monday, July 09, 2007
Waiting...
We had a great time in NYC (more on that later) and drove to Boston this morning. Brad, Amy (my cousin who's a doctor), and I are sitting in the waiting room at the Dana Farber Cancer Institute waiting to see the surgeon, Dr. Raut. Please keep us in your prayers. I'm not sure if we'll know anything tonight because we meet with the oncologist tomorrow, but we'll update anyway.
Tuesday, July 03, 2007
We are home!
We are home! Apparently this morning's test was negative since we were discharged around Noon today. Everyone is doing good. We are now packing our bags for our trip to Boston. We will be driving to Dallas tomorrow morning so we can spend the 4th with Jordan's family. We will be leaving the kids with her parents. We fly into Providence, RI Saturdsay July 7th. Jordan has never been to NY,NY so was plan on spending Sunday July 8th in "The City." Pray for good health and that whatever caused her flare up she had this past Sunday doesn't ever happen again. For those of you who saw her in the ER Sunday, you know what I am talking about. Our first appointment is with Dr. Raut on Monday July 9th at 3:00 Eastern. He is a surgeon. Our second appointment is the following day at 2:30 Eastern with the oncologist.
We will keep everyone posted as we progress because I know there are many reading who are very interested in our trip. We continue to thank God for you and your friendship!
Brad
We will keep everyone posted as we progress because I know there are many reading who are very interested in our trip. We continue to thank God for you and your friendship!
Brad
Tuesday, July 03, 2007
Still waiting....
We are still in the hospital. We think we will be leaving soon, but we are still waiting on someone to read a sonogram that was done this morning to check for a blood clot in the vein going into the liver. Dr. Johnson reported this morning that Jordan's blood count did drop a little, but just a few tenths of a point which wasn't enough to keep us here. He wanted to do the sonogram because he said if there was one there it would be very painful and he couldn't let us leave without checking this one last thing.
Brad
Brad
Monday, July 02, 2007
More information
Dr. Johnson dropped by about an hour or so ago and reported that we will be staying another evening. They want to continue to watch Jordan although she appears to be back to normal. He has ordered another early morning blood test tomorrow. If the results are positive (i.e., she isn't loosing blood any longer) then we will likely be discharged tomorrow morning. He hypothesized that the reason for Jordan's pain yesterday is that the tumor on the spleen likely bled a little bit and then stopped. Remember this tumor is the one that we discovered in April and the doctors said was likely sharing a tumor with the liver that was removed in March.
In any event, Dr. Johnson reported that he visited with Dr. Strauss this morning and he didn't want anything else done but just reported we needed to get to Boston. Also, Dr. Johnson confirmed that the tumor near the vena cava is smaller. He also said it may show the Gleevec is working, but just not as fast as is expected. He was quick, however, to point out that the Doctors in Boston would know for certain as all they do all day is work on sarcoma tumors (the type of tumor a GIST is).
Brad
In any event, Dr. Johnson reported that he visited with Dr. Strauss this morning and he didn't want anything else done but just reported we needed to get to Boston. Also, Dr. Johnson confirmed that the tumor near the vena cava is smaller. He also said it may show the Gleevec is working, but just not as fast as is expected. He was quick, however, to point out that the Doctors in Boston would know for certain as all they do all day is work on sarcoma tumors (the type of tumor a GIST is).
Brad
Monday, July 02, 2007
The latest
Brad here.
Well, today is another day. However, before I explain what the day has in store, I will elaborate a little more on yesterday.
On Saturday morning Jordan woke up complaining of pain in her rib cage area. She said it felt like someone was pushing on her ribs constantly. She felt like it was probably a side effect of Gleevec as she has had other aches and pains soon after beginning to take it. So, we just chalked it up to another weird pain caused by Gleevec. Jordan spent the majority of the day in bed getting out of the house on two occasions. Each time, in pain but on Tylenol which made it manageable.
Saturday evening she woke a couple times in pain and to take Tylenol. About 7:00 Sunday morning she said she wasn't feeling up to going to church but for me to take Eli and leave her with Phoebe. She texted me and called about 11:30 and told me to come straight home. After wrangling Eli to the car we left church and upon walking into the house Jordan said her pain was increasing, her hands were going numb, and she was having a difficult time breathing. We immediately decided to go to hospital.
I started calling every friend from church who I knew was still there visiting (we only live a couple blocks from church) to see if they could keep the kids. I finally got a hold of our senior minister and within 10 minutes they were at our house and we were giving them the essentials of care. I called a friend who was a doctor and told him we were headed to the ER. He said he would call and tell them we were coming and he would meet us there. He had us pull up to the ambulance bay and he got us in immediately.
The next 2 hours were pretty bad. Jordan was in a lot of pain. Her legs and hands were going numb. She was likely hyperventilating which was causing her numbness. Once an IV was started, pain killers administered, and anti-nausea medicine given, she finally was able to rest. She was pretty much out of it due to the drugs for the rest of the day.
About 4:30 Jordan started drinking the contrast for a CT Scan with contrast. At 6:15 we had the scan. About an hour later Dr. Smith (the same ER doctor we had in March) gave us the results. He said he couldn't see any reason for her pain on the scan. None of the existing tumors were bleeding like they were in March. This was great news. He wanted to order one more blood test to check for blood clots. He said this is a common side effect for patients with cancer. About an hour later he and the GI doctor on call reported the results indicated she could have a blood clot and they were going to order a VQ (some sort of chest nuclear test). I don't remember what is stands for. After it was complete, I was talking with Dr. Smith and wondering if we needed to take our Gleevec for the night. I told him that the oncologist in Dallas didn't think it was working but told us to keep taking it nonetheless until our last prescription ran out. He had earlier mentioned that the radiologist thought that one of her tumors in her liver was smaller. I asked him to explain this further. He actually took me to the computer and we spent about 15 minutes looking at her CT scan from yesterday and then comparing it to the one on March 7th. From what we were able to see, the tumor has shrunk! It measured 5.8 cm across and 4.? the other direction in March. Yesterday, it was reading 4.2 cm across and 3.9 the other direction. So, possibly Gleevec is working! Of course I don't want to get our hopes up too much since this is me and an ER doctor comparing two CT scans as opposed to an oncologist comparing two P.E.T. scans. However, at this point we just need some good news so I am going to share this hopeful observation.
Anyway, about 10:00 last night they moved us to a room in the hospital. BSA opened a new bed tower about 3 weeks ago so we have a nice new room. This is a good plus to being hospitalized in Amarillo! I visited with Dr. Smith about midnight down in the ER. He showed me the VQ scan and let me listen to the dictation. He said it appears to be clear...not blood clots. So, that is where things were last night when I blogged.
Now, since then, Jordan is doing a lot better. She hasn't had any pain medication since about 10 last night. She also isn't sick at her stomach either. Dr. Tom Johnson (our GI doctor here in Amarillo) stopped in this morning about 7:00. He reported that Jordan's red blood cell count dropped during the evening. They were going to do some more lab work to see if they can figure out why from it. If not, possibly we will have some more test run today. He also mentioned there possibly could be an area near her spleen where blood is pooling. Possibly is the key word. She doesn't hurt in that area when pressed and it isn't absolutely clear that it is blood on the scans. In the end, he told us he would be visiting with Dr. Strauss (oncologist in Dallas) and see what he wants done....if anything. He also indicated we would probably be staying here most of the day. I don't think anybody is going to take any chances with our recent history. It is possible that Gleevec is causing the red blood cell count to drop, so this could be an easy explanation.
Speaking of recent history, in talking with Dr. Smith last night about all that has happened in our care since the first day he treated us in the ER back in March, we started talking about that day. I mentioned to him that Dr. Shires had told me the day after flying to Dallas that it was a "home run" that Jordan was able to be embolized in Amarillo so she could fly to Dallas for surgery. Then he said, we embolize people to "save their lives". Dr. smith then said, yes, your wife was really sick back in March. He said, she didn't look as sick as she was, but that she was really close to death. He said, there are not many people that he bites his fingernails over, but he did over Jordan. Wow! It just brought back many many memories of March and once again convinced me that God was with us on March 7, 2007 as he is today.
Well, I will post more later as we learn more. Jordan's mom and aunt Sharon went to pick up the kids about 30 minutes ago. If anybody wants to come by we are in room 420 at BSA in the new Ware Tower.
Brad
Well, today is another day. However, before I explain what the day has in store, I will elaborate a little more on yesterday.
On Saturday morning Jordan woke up complaining of pain in her rib cage area. She said it felt like someone was pushing on her ribs constantly. She felt like it was probably a side effect of Gleevec as she has had other aches and pains soon after beginning to take it. So, we just chalked it up to another weird pain caused by Gleevec. Jordan spent the majority of the day in bed getting out of the house on two occasions. Each time, in pain but on Tylenol which made it manageable.
Saturday evening she woke a couple times in pain and to take Tylenol. About 7:00 Sunday morning she said she wasn't feeling up to going to church but for me to take Eli and leave her with Phoebe. She texted me and called about 11:30 and told me to come straight home. After wrangling Eli to the car we left church and upon walking into the house Jordan said her pain was increasing, her hands were going numb, and she was having a difficult time breathing. We immediately decided to go to hospital.
I started calling every friend from church who I knew was still there visiting (we only live a couple blocks from church) to see if they could keep the kids. I finally got a hold of our senior minister and within 10 minutes they were at our house and we were giving them the essentials of care. I called a friend who was a doctor and told him we were headed to the ER. He said he would call and tell them we were coming and he would meet us there. He had us pull up to the ambulance bay and he got us in immediately.
The next 2 hours were pretty bad. Jordan was in a lot of pain. Her legs and hands were going numb. She was likely hyperventilating which was causing her numbness. Once an IV was started, pain killers administered, and anti-nausea medicine given, she finally was able to rest. She was pretty much out of it due to the drugs for the rest of the day.
About 4:30 Jordan started drinking the contrast for a CT Scan with contrast. At 6:15 we had the scan. About an hour later Dr. Smith (the same ER doctor we had in March) gave us the results. He said he couldn't see any reason for her pain on the scan. None of the existing tumors were bleeding like they were in March. This was great news. He wanted to order one more blood test to check for blood clots. He said this is a common side effect for patients with cancer. About an hour later he and the GI doctor on call reported the results indicated she could have a blood clot and they were going to order a VQ (some sort of chest nuclear test). I don't remember what is stands for. After it was complete, I was talking with Dr. Smith and wondering if we needed to take our Gleevec for the night. I told him that the oncologist in Dallas didn't think it was working but told us to keep taking it nonetheless until our last prescription ran out. He had earlier mentioned that the radiologist thought that one of her tumors in her liver was smaller. I asked him to explain this further. He actually took me to the computer and we spent about 15 minutes looking at her CT scan from yesterday and then comparing it to the one on March 7th. From what we were able to see, the tumor has shrunk! It measured 5.8 cm across and 4.? the other direction in March. Yesterday, it was reading 4.2 cm across and 3.9 the other direction. So, possibly Gleevec is working! Of course I don't want to get our hopes up too much since this is me and an ER doctor comparing two CT scans as opposed to an oncologist comparing two P.E.T. scans. However, at this point we just need some good news so I am going to share this hopeful observation.
Anyway, about 10:00 last night they moved us to a room in the hospital. BSA opened a new bed tower about 3 weeks ago so we have a nice new room. This is a good plus to being hospitalized in Amarillo! I visited with Dr. Smith about midnight down in the ER. He showed me the VQ scan and let me listen to the dictation. He said it appears to be clear...not blood clots. So, that is where things were last night when I blogged.
Now, since then, Jordan is doing a lot better. She hasn't had any pain medication since about 10 last night. She also isn't sick at her stomach either. Dr. Tom Johnson (our GI doctor here in Amarillo) stopped in this morning about 7:00. He reported that Jordan's red blood cell count dropped during the evening. They were going to do some more lab work to see if they can figure out why from it. If not, possibly we will have some more test run today. He also mentioned there possibly could be an area near her spleen where blood is pooling. Possibly is the key word. She doesn't hurt in that area when pressed and it isn't absolutely clear that it is blood on the scans. In the end, he told us he would be visiting with Dr. Strauss (oncologist in Dallas) and see what he wants done....if anything. He also indicated we would probably be staying here most of the day. I don't think anybody is going to take any chances with our recent history. It is possible that Gleevec is causing the red blood cell count to drop, so this could be an easy explanation.
Speaking of recent history, in talking with Dr. Smith last night about all that has happened in our care since the first day he treated us in the ER back in March, we started talking about that day. I mentioned to him that Dr. Shires had told me the day after flying to Dallas that it was a "home run" that Jordan was able to be embolized in Amarillo so she could fly to Dallas for surgery. Then he said, we embolize people to "save their lives". Dr. smith then said, yes, your wife was really sick back in March. He said, she didn't look as sick as she was, but that she was really close to death. He said, there are not many people that he bites his fingernails over, but he did over Jordan. Wow! It just brought back many many memories of March and once again convinced me that God was with us on March 7, 2007 as he is today.
Well, I will post more later as we learn more. Jordan's mom and aunt Sharon went to pick up the kids about 30 minutes ago. If anybody wants to come by we are in room 420 at BSA in the new Ware Tower.
Brad
Monday, July 02, 2007
A long day....
Some of you know while others will learn for the first time reading this post that today has been a long day for us. Today around Noon I took Jordan back to ER at BSA because she was complaining of strong continuous chest pain, numbness in her hands, and was having a difficult time breathing. There is much to say but many of the details of the day will have to wait for a time when I have more than 5 minutes to write.
In short, the results of the CT-Scans and some other nuclear lung exam have not explained any of this. We were moved from the ER to a room about an hour or so ago. Jordan continues on her anti-nausea medicine and therefore remains loopy (if that is a word). She was in extradorinary pain about 1:00 today. After she received two dosages of pain medication she was finally able to rest. I haven't seen her hurt that much except during the birth of our kids (even then she had an epideral so I don't know if it compares).
Please pray for us. Jordan's mom flew in and got her about three hours ago. Iran home to get her Gleevec. I thought I would drop a quick line before returning to sleep at the hospital. We are in room 420 in the new Ware tower if anyone cares to stop by. I don't know how long we will remain there, however.
Brad
In short, the results of the CT-Scans and some other nuclear lung exam have not explained any of this. We were moved from the ER to a room about an hour or so ago. Jordan continues on her anti-nausea medicine and therefore remains loopy (if that is a word). She was in extradorinary pain about 1:00 today. After she received two dosages of pain medication she was finally able to rest. I haven't seen her hurt that much except during the birth of our kids (even then she had an epideral so I don't know if it compares).
Please pray for us. Jordan's mom flew in and got her about three hours ago. Iran home to get her Gleevec. I thought I would drop a quick line before returning to sleep at the hospital. We are in room 420 in the new Ware tower if anyone cares to stop by. I don't know how long we will remain there, however.
Brad
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