Well yesterday we got a call between 10 and 11 that at 1 we had to go to the other clinic and get the blood. Well we thought the hotel's shuttle ran at 12:30, but the only ones close to one were at 11:30 and 1:30.. So we took the 1:30 one (we called to say we were going to be late, but no one called back!)
So we got there around 2pm. We were there until 3:20 when they brought us back. They did his vitals, and then brought us in for the blood. They started it at 5ish after giving benadryl and tylenol first. At close to 7 we got a call from admissions that we got a bed finally!
So we left at close to 7:30 and came to the main building. We got checked in and sent to our floor. We get here and there was no bed in the room!! So finally we got a bed around 8:15ish. They of course freaked that his catheter wasn't dressed and then took his blood. They also hooked him up with a dressing then with regular fluids.
They had to wait until after midnight before they got the results of the blood tests (as they wanted to make sure his hemoglobbin was up before chemo.) They were only at an 8, so he got 2 units of blood around 2 am. At 5:25 we started the chemo.
James said if not for the tubes he wouldn't even know he was getting treatment! Thank goodness! Please pray that continues! THey showed us his blood work after this am and his hemoglobbin was at 10.3! :-) That is really good (considering!). Still plan on 4ish days in the hospital, so we'll see how that goes! So that's the latest!
Saturday, February 28, 2009
Friday, February 27, 2009
Waiting.. still
Well we made it to Texas, without being in a wreck! Although we were close! Right before we got to Dallas the traffic appeared to slow down and I thought I saw flashing lights. So I slowed a bit and thank goodness I did! The 4 or 6 cars in front of us crashed into each other! It was freaky. Oh and I should mention this was caused by looked at 3 others that had piled up next to. So yeah.
We got to TX at 1:45am. Yesterday we were supposed to get admitted to the hospital. We were told to be there at 9 am for blood draws then go meet with the dr. Well finally we met the dr at 12:30! We had spoken with admissions Wednesday to get preadmitted, then to call back yesterday morning.
When I called they said expect to be waiting until late afternoon. When we saw the dr she said the same but was a bit concerned with his hemoglobbin levels being low. They were 7.3 or 7.5 can't remember. Since he wasn't having symptoms of being low she said we'd be ok but wanted to probably give him a unit of blood sometime yesterday or today if he didn't get admitted.
Well we waited around until almost 4pm and James called the admissions people back. They said they were so full that to go back to the hotel and wait for them to call. So we did. On the way to the hotel the drs office called to say that we wouldn't get admitted yesterday, more likely today and that they wanted to give him some blood. So today sometime (waiting on the call of when) we will get blood, and might get a hospital room too.
So we wait.
Oh and the couple we met from Michigan? We saw them again. Keep them in your P&PT if you can! They got some news and are trying to get answers. They are so sweet and we wish them all the best!!!
We got to TX at 1:45am. Yesterday we were supposed to get admitted to the hospital. We were told to be there at 9 am for blood draws then go meet with the dr. Well finally we met the dr at 12:30! We had spoken with admissions Wednesday to get preadmitted, then to call back yesterday morning.
When I called they said expect to be waiting until late afternoon. When we saw the dr she said the same but was a bit concerned with his hemoglobbin levels being low. They were 7.3 or 7.5 can't remember. Since he wasn't having symptoms of being low she said we'd be ok but wanted to probably give him a unit of blood sometime yesterday or today if he didn't get admitted.
Well we waited around until almost 4pm and James called the admissions people back. They said they were so full that to go back to the hotel and wait for them to call. So we did. On the way to the hotel the drs office called to say that we wouldn't get admitted yesterday, more likely today and that they wanted to give him some blood. So today sometime (waiting on the call of when) we will get blood, and might get a hospital room too.
So we wait.
Oh and the couple we met from Michigan? We saw them again. Keep them in your P&PT if you can! They got some news and are trying to get answers. They are so sweet and we wish them all the best!!!
Saturday, February 21, 2009
What's next.
Let's see, a bunch has happened it seems since last update! :-) We are in Kansas for a few more days, then will be heading back to TX on Wednesday. We had to come home to get some loose ends tied up!!
So I guess I left off Tuesday with that appt. Wednesday we had nothing going on so we relaxed the day away! Then Thursday we had to be there at 8:15 for lab, then the appt at 11, then echo at 3. Well they said we'd do lab then ecko then dr appt. Well the echo lab was backed up so we sat an waited, and waited and waited. Were told to come back at 11:30 and they'd work us in. Finally around 1 we were worked in!
So we get the ecko done, then have to wait until around 3 to see the dr! Talk about waiting!! So we finally got in to see the dr. We first saw Dr. Tong (with a T as he said! LOL) and discussed briefly the bone marrow biopsy results. They have determined he has ALL and doesn't have the Philidelphia Chromosome nor the T Cell which is a good thing!! So it's straight up Chemo for him.
Then Dr. D. T. comes in and starts talking about admitting him that day! We had to come home first because they told us only outpatient, so we have to get his insurance stuff figured out, someone to watch the house, etc! Plus we were told we have to talk to business office prior to chemo or any other steps that are different to make sure insurance pays for it.
So they send us there at 4:49 pm and you know nothing gets done that late at night! So we were told they would call us the next morning... So Friday we got up and around and got to the hospital a bit after 10, after getting NO phone calls. UGh!
We go to Leukemia Clinic and ask to talk to the nurse to get the papers back that weren't the right ones for them? Then ask about the business office, and the tegaderm that has irritated James' skin and caused blisters! Oh my! So they said business office would call us when they were ready and that we could go to infusion therapy to get different covering.
While there I got a call back from the social worker to see about cheap (LOL) housing! Well she said to meet her next door to where we were when done. Well the dressing change also turned into caps change and flushing. They won't send home more dressing changes for me, because I haven't taken their classes to do it. Whatever, I've been doing the stuff since January, still not keen on taking their stupid classes for something I already know how to do! We'll see if I end up taking the classes! ;-)
So we go to Social work, and our worker had an emergency so told to come back at 1pm (it was 12:20 then). We got lunch and came back and waited a bit more. Finally we met the social worker. She is really nice. She gave us a list of the housing choices (which aren't that cheap!!) and talked about what they can do for us. I also told her about his PTSD which they were glad to know about.
So then we went back to the clinic got the prescription for the heprin (as I'm almost out!) and talked to business office who said they had it all straigtened out for admitance that day (umm who said today??). We finally got them to do Thursday next week and that's that. So we went back to the hotel and checked out and at 4:15 this am we got home. So that's our plan!
Oh about the treatment (sorry this is a novel!!). It will be 8 cycles of inclusion therapy. Odd cycles will be Hyper CVAD, and the evens will be a different type of meds. The odds are 5 meds that he will take through IV. On certain days they will also draw spinal fluid (spinal tap) and give small dose of the 2nd type of meds through his spinal column. They will also do 2 bone marrow aspirates in Cycle 1, on days 14 and 21. They said they expect a 90% remission rate after cycle 1, with a 95% success rate after all of it!
Cycle 1 we have to stay in the Houston area. Then the others we can just travel. Then after the first 8 cycles, we will start maintaince Chemo for the next 30 months (2.5 years). They think he will recover after each cycle well, and probably won't need a transplant!!! WOOHOO!!! So that's the game plan! Thank you all for your prayers and thoughts! They mean the world to us!!
So I guess I left off Tuesday with that appt. Wednesday we had nothing going on so we relaxed the day away! Then Thursday we had to be there at 8:15 for lab, then the appt at 11, then echo at 3. Well they said we'd do lab then ecko then dr appt. Well the echo lab was backed up so we sat an waited, and waited and waited. Were told to come back at 11:30 and they'd work us in. Finally around 1 we were worked in!
So we get the ecko done, then have to wait until around 3 to see the dr! Talk about waiting!! So we finally got in to see the dr. We first saw Dr. Tong (with a T as he said! LOL) and discussed briefly the bone marrow biopsy results. They have determined he has ALL and doesn't have the Philidelphia Chromosome nor the T Cell which is a good thing!! So it's straight up Chemo for him.
Then Dr. D. T. comes in and starts talking about admitting him that day! We had to come home first because they told us only outpatient, so we have to get his insurance stuff figured out, someone to watch the house, etc! Plus we were told we have to talk to business office prior to chemo or any other steps that are different to make sure insurance pays for it.
So they send us there at 4:49 pm and you know nothing gets done that late at night! So we were told they would call us the next morning... So Friday we got up and around and got to the hospital a bit after 10, after getting NO phone calls. UGh!
We go to Leukemia Clinic and ask to talk to the nurse to get the papers back that weren't the right ones for them? Then ask about the business office, and the tegaderm that has irritated James' skin and caused blisters! Oh my! So they said business office would call us when they were ready and that we could go to infusion therapy to get different covering.
While there I got a call back from the social worker to see about cheap (LOL) housing! Well she said to meet her next door to where we were when done. Well the dressing change also turned into caps change and flushing. They won't send home more dressing changes for me, because I haven't taken their classes to do it. Whatever, I've been doing the stuff since January, still not keen on taking their stupid classes for something I already know how to do! We'll see if I end up taking the classes! ;-)
So we go to Social work, and our worker had an emergency so told to come back at 1pm (it was 12:20 then). We got lunch and came back and waited a bit more. Finally we met the social worker. She is really nice. She gave us a list of the housing choices (which aren't that cheap!!) and talked about what they can do for us. I also told her about his PTSD which they were glad to know about.
So then we went back to the clinic got the prescription for the heprin (as I'm almost out!) and talked to business office who said they had it all straigtened out for admitance that day (umm who said today??). We finally got them to do Thursday next week and that's that. So we went back to the hotel and checked out and at 4:15 this am we got home. So that's our plan!
Oh about the treatment (sorry this is a novel!!). It will be 8 cycles of inclusion therapy. Odd cycles will be Hyper CVAD, and the evens will be a different type of meds. The odds are 5 meds that he will take through IV. On certain days they will also draw spinal fluid (spinal tap) and give small dose of the 2nd type of meds through his spinal column. They will also do 2 bone marrow aspirates in Cycle 1, on days 14 and 21. They said they expect a 90% remission rate after cycle 1, with a 95% success rate after all of it!
Cycle 1 we have to stay in the Houston area. Then the others we can just travel. Then after the first 8 cycles, we will start maintaince Chemo for the next 30 months (2.5 years). They think he will recover after each cycle well, and probably won't need a transplant!!! WOOHOO!!! So that's the game plan! Thank you all for your prayers and thoughts! They mean the world to us!!
Tuesday, February 17, 2009
Change in plans? Oh my! LOL
Well today was a LONG day! We got to the hospital around 7:15 and found our way to the office. We filled out some paperwork, met with the business lady (to make sure the insurance stuff was good), then waited to have the vitals checked/meet with the nurse.
After talking with Lee (the male nurse! :-) ) we were taken down to the fast track lab. We met a really nice lady, but I didn't catch her name! LOL So James went in and had his blood drawn (15 tubes!!) and I met a really sweet breast cancer survivor and her mom! They were so sweet! From there we went to the bone marrow biopsy lab and got signed in, then brought downstairs to the chest x-ray. (We were told it would be 1.5 hrs wait for the biopsy, so be back in one hr).
So he did the X-ray and got his pic taken for their files, and we went to brunch/late breakfast. We had a good chat then went back to the biopsy lab as the hr was almost up. 2 hrs later, he went in for his biopsy! He was out quickly and the guy was really nice and said James has strong bones! We met a nice couple from Michigan there, and got along well! We are staying at the same hotel and will be exchanging numbers before they leave.
From there we went downstairs and got a drink and relaxed for a few. We then went back to the Leukemia clinic and watched the fish in the tank fight each other while we waited on the dr! (Mind you it was now around 2:15ish and our appt was 4pm, but we thought we would get in early). We finally were seen around 4:30!
We really liked the dr. She is very smart but talks to you so that you understand! She also answered all my questions and more, and we have business cards to contact people if needed! She said that she can't predict what our treatment plan will be until after she gets the results of the biopsy back. We go back on Thursday to discuss what Leukemia he has (finally!!!), what the game plan is, and some more information.
She said that I will get too much information and won't remember it all, but that we'll be discussing it a lot so I'll catch it. She said that the fact his platelets look really good that he *should* recover quickly from the Chemo. Oh did I mention that we were told to be here 3-5 business days, but now he might get admitted on Thursday to start Chemo! Oh my! We're ready to get the show on the road though, so we'll go with it.
We finally left the hospital at 6:15 pm (we stayed a bit later waiting on an antibiotic that she prescribed for him that he'll take after started the chemo to help fight infection). So that was today, and we go back Thursday, so we have tomorrow to chill, maybe! :-)
After talking with Lee (the male nurse! :-) ) we were taken down to the fast track lab. We met a really nice lady, but I didn't catch her name! LOL So James went in and had his blood drawn (15 tubes!!) and I met a really sweet breast cancer survivor and her mom! They were so sweet! From there we went to the bone marrow biopsy lab and got signed in, then brought downstairs to the chest x-ray. (We were told it would be 1.5 hrs wait for the biopsy, so be back in one hr).
So he did the X-ray and got his pic taken for their files, and we went to brunch/late breakfast. We had a good chat then went back to the biopsy lab as the hr was almost up. 2 hrs later, he went in for his biopsy! He was out quickly and the guy was really nice and said James has strong bones! We met a nice couple from Michigan there, and got along well! We are staying at the same hotel and will be exchanging numbers before they leave.
From there we went downstairs and got a drink and relaxed for a few. We then went back to the Leukemia clinic and watched the fish in the tank fight each other while we waited on the dr! (Mind you it was now around 2:15ish and our appt was 4pm, but we thought we would get in early). We finally were seen around 4:30!
We really liked the dr. She is very smart but talks to you so that you understand! She also answered all my questions and more, and we have business cards to contact people if needed! She said that she can't predict what our treatment plan will be until after she gets the results of the biopsy back. We go back on Thursday to discuss what Leukemia he has (finally!!!), what the game plan is, and some more information.
She said that I will get too much information and won't remember it all, but that we'll be discussing it a lot so I'll catch it. She said that the fact his platelets look really good that he *should* recover quickly from the Chemo. Oh did I mention that we were told to be here 3-5 business days, but now he might get admitted on Thursday to start Chemo! Oh my! We're ready to get the show on the road though, so we'll go with it.
We finally left the hospital at 6:15 pm (we stayed a bit later waiting on an antibiotic that she prescribed for him that he'll take after started the chemo to help fight infection). So that was today, and we go back Thursday, so we have tomorrow to chill, maybe! :-)
Monday, February 16, 2009
Here
Well I figured I should update! LOL
We are in Houston not far from the hospital. We drove by it today to see where it was! It's huge, just like I thought! We left Sunday night at about 7:45 and arrived this am at 9:15 in Houston. (We were going to spend the night in OK, but kept going! LOL)
We actually ended up at the wrong hotel, but closer to the hospital. They honored the other price and set us up here, so it's good! We could walk to the hospital if we'd like! We have our appt tomorrow morning at 8am, bt have to be there at 7:30. I will update tomorrow night! :-)
We are in Houston not far from the hospital. We drove by it today to see where it was! It's huge, just like I thought! We left Sunday night at about 7:45 and arrived this am at 9:15 in Houston. (We were going to spend the night in OK, but kept going! LOL)
We actually ended up at the wrong hotel, but closer to the hospital. They honored the other price and set us up here, so it's good! We could walk to the hospital if we'd like! We have our appt tomorrow morning at 8am, bt have to be there at 7:30. I will update tomorrow night! :-)
Monday, February 9, 2009
Today's Appts! :-)
Well today we got to the VA about 10 til 9 (our appt was at 9). Try finding a parking spot at that time! LOL Fianlly he found a spot and we went in.
We saw Marlene shortly and talked to her. She got us more heprin and saline and caps. She also got the kit out and removed the stitches holding the catheter in place while the skin got the cuff of it held in place so it wouldn't slip. It took a minute to remove as some of the stiches had tried to grow into the skin!! After they were removed, James said he immediately felt like pressure was released! Who would have thought?
We talked with her some more and told her our plans for TX. After we left, we got a phone call from Lucresha. She gave me a list of things needed to bring with us, hotel information, etc. So we ate lunch with my dad and went back to the VA. We needed to get the glass slides from the bone marrow biopsy or would have to do it again!
Marlene called and then brought us to Release of information. That lady.. my! She said we couldn't hand carry the slides, although Marlene said we could! I told her to call Marlene, but she insisted she was going to talk to the lab person! WTH! So finally the lab person said we could but then this lady said we shouldn't! So the lab lady came down and talked to us. She was such a sweetheart!!
She said that she was Fed Ex'ing the slides and ALL of the reports they have down there! WooHoo!! She is making sure they will get everything they have! I think that will be great so they will have all of the information and can examine it all before we get there! :-) That should be a good thing!!
So I think that is it for now! :-)
We saw Marlene shortly and talked to her. She got us more heprin and saline and caps. She also got the kit out and removed the stitches holding the catheter in place while the skin got the cuff of it held in place so it wouldn't slip. It took a minute to remove as some of the stiches had tried to grow into the skin!! After they were removed, James said he immediately felt like pressure was released! Who would have thought?
We talked with her some more and told her our plans for TX. After we left, we got a phone call from Lucresha. She gave me a list of things needed to bring with us, hotel information, etc. So we ate lunch with my dad and went back to the VA. We needed to get the glass slides from the bone marrow biopsy or would have to do it again!
Marlene called and then brought us to Release of information. That lady.. my! She said we couldn't hand carry the slides, although Marlene said we could! I told her to call Marlene, but she insisted she was going to talk to the lab person! WTH! So finally the lab person said we could but then this lady said we shouldn't! So the lab lady came down and talked to us. She was such a sweetheart!!
She said that she was Fed Ex'ing the slides and ALL of the reports they have down there! WooHoo!! She is making sure they will get everything they have! I think that will be great so they will have all of the information and can examine it all before we get there! :-) That should be a good thing!!
So I think that is it for now! :-)
Sunday, February 8, 2009
WooHoo!
Hey everyone! :-)
Well Thursday I got a call from MD Anderson that they needed more lab reports faxed! UGH! So I went and faxed the last 2 I have copies of. I figured we'd have to wait until Monday to hear more..
Well, wouldn't you know I got a call Friday at 4:15! WooHoo! She said that James has been medically accepted at MD Anderson and that Dr. Thomas will be our dr!! She gave me some lists of dates for us to choose from to go for our appt. We will be going 1-2 weeks from now!
I should hear more next week about what all will happen. We will have to be there for 3-5 business days as an outpatient. From there, I don't know yet. I just know that this feels so wonderful. We are still scheduled for Monday at the original VA so we'll see!
So that's the update! :-) When I know more I'll post again! :-)
Well Thursday I got a call from MD Anderson that they needed more lab reports faxed! UGH! So I went and faxed the last 2 I have copies of. I figured we'd have to wait until Monday to hear more..
Well, wouldn't you know I got a call Friday at 4:15! WooHoo! She said that James has been medically accepted at MD Anderson and that Dr. Thomas will be our dr!! She gave me some lists of dates for us to choose from to go for our appt. We will be going 1-2 weeks from now!
I should hear more next week about what all will happen. We will have to be there for 3-5 business days as an outpatient. From there, I don't know yet. I just know that this feels so wonderful. We are still scheduled for Monday at the original VA so we'll see!
So that's the update! :-) When I know more I'll post again! :-)
Wednesday, February 4, 2009
What's new and a birthday! ;-)
Well since I last updated, it's been frustrating!!
Lets see... I called the next day to see if the referral had been sent, and MD Anderson said they hadn't received it! I then called the drs office and the lady said that there was only one lady that can fax referrals (UGH!) and that she wasn't in the office but could send me to her voicemail, so I did.
Well I left MY name and number and they called James back around 7 pm! WTH! Anyway she said is this for Dr. Anderson? Umm no lady!! It's MD Anderson, the cancer treatment facility!! UGh! She said oh!! I'll send it first thing in the morning!
So I waited until Monday to see what had happened. The lady we've been talking to at MD Anderson wasn't in.. Today James called and spoke with her. She said they received the referral and she has sent it off to the nurses and they will pick a dr! She said we should hear back from them soon!!!
Hopefully we hear back tomorrow and learn our plan of action! Also talked with the original VA. We have an appt on Monday at 9am to get his stitches removed from getting his Hickman Cathater placed! So that is the plan of attack! :-)
James is also celebrating his 57th birthday today! WooHoo! ;-) Hopefully this year is full of good news for him!
Lets see... I called the next day to see if the referral had been sent, and MD Anderson said they hadn't received it! I then called the drs office and the lady said that there was only one lady that can fax referrals (UGH!) and that she wasn't in the office but could send me to her voicemail, so I did.
Well I left MY name and number and they called James back around 7 pm! WTH! Anyway she said is this for Dr. Anderson? Umm no lady!! It's MD Anderson, the cancer treatment facility!! UGh! She said oh!! I'll send it first thing in the morning!
So I waited until Monday to see what had happened. The lady we've been talking to at MD Anderson wasn't in.. Today James called and spoke with her. She said they received the referral and she has sent it off to the nurses and they will pick a dr! She said we should hear back from them soon!!!
Hopefully we hear back tomorrow and learn our plan of action! Also talked with the original VA. We have an appt on Monday at 9am to get his stitches removed from getting his Hickman Cathater placed! So that is the plan of attack! :-)
James is also celebrating his 57th birthday today! WooHoo! ;-) Hopefully this year is full of good news for him!
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