With the new season coming what better time to start a new treatment? Dallas' platelet level is still climbing (at 64,000 today!) and his oncologist feels comfortable enough to start him on a new drug. This time it will be administered orally with a weekly visit to the oncologist in Gainesville.
The trips down south will keep on coming. Next weekend, the family (excluding myself sadly) will spend some time at the Grandparents lake house and again two weeks after that for Easter. Jonathan and I will hopefully be able to make that trip and escape what seems like a never ending "northern winter".
Another small vacation is being planned for a long weekend at the Suwannee River, where our Granddaddy used to have a house. And of course there's still the trip to visit the most awesome sister in the world in DC at the end of April.
Let's see those platelets try and beat all that!
-J
Tuesday, March 17, 2009
Sunday, March 15, 2009
Home Sweet Home
Sorry for yet another delay. Dallas was released from Shands Monday evening and arrived back in Tallahassee on Wednesday night just in time for my visit. We've all been so busy since then that updating kept getting pushed back.
As of Friday morning Dallas' platelet level was still rising and had reached 31,000. Since my arrival, mom and I have been working hard on keeping up with his never ending appetite.
Symptoms such as numbness in his left side associated with the tumor have started to surface. On Tuesday he will make another trip to Shands to meet with Dr. Smith (his NO) to discuss the next step in treatment and possibly have an MRI. The MRI will help them to decide exactly what his options are and the best one to move forward with.
Since I've been back we've been very busy with excursions to the Junior Museum (now known as the Tallahassee Museum, but we'll never acknowledge the change), the beach at Alligator Point, watched numerous FSU basketball games (they just lost the ACC Championship unfortunately) and sat by the pool for a cookout. It's been a great visit filled with lots of laughter as usual, and I'll be very sad to leave tomorrow. Tonight David has promised to kick all our butts in Apples to Apples.
We'll see.
-Jessie
PS - New photos have been uploaded on the right. More will be posted soon.
As of Friday morning Dallas' platelet level was still rising and had reached 31,000. Since my arrival, mom and I have been working hard on keeping up with his never ending appetite.
Symptoms such as numbness in his left side associated with the tumor have started to surface. On Tuesday he will make another trip to Shands to meet with Dr. Smith (his NO) to discuss the next step in treatment and possibly have an MRI. The MRI will help them to decide exactly what his options are and the best one to move forward with.
Since I've been back we've been very busy with excursions to the Junior Museum (now known as the Tallahassee Museum, but we'll never acknowledge the change), the beach at Alligator Point, watched numerous FSU basketball games (they just lost the ACC Championship unfortunately) and sat by the pool for a cookout. It's been a great visit filled with lots of laughter as usual, and I'll be very sad to leave tomorrow. Tonight David has promised to kick all our butts in Apples to Apples.
We'll see.
-Jessie
PS - New photos have been uploaded on the right. More will be posted soon.
Monday, March 9, 2009
Temperamental Platelets
It has been a roller coaster of a weekend, for the platelets anyway. After coming up to 15,000 on Friday they dropped again to 7,000 on Saturday. The doctors believe that surprisingly the Avastin (chemo) Dallas has been on since October may actually have caused the drops.
As of this morning his platelet count has risen to 15,000. They believe the increase is because they have taken him off of all meds and started administering steroids. When his counts reach 75,000 a new treatment path will be discussed and implemented. Hopefully sooner than later.
Poor Dallas seems to be bored out of his mind. He feels good and was finally allowed to go out for a walk yesterday but will not be released from the hospital until his counts reach 20,000. Dr. Smith (NO) seems to think that will be tomorrow or Wednesday if the rise continues. Until then he will have to occupy his time with episodes of Jerry Springer and Oprah.
That's all for now. Hopefully tomorrow will bring a post of hospital exodus.
-J
As of this morning his platelet count has risen to 15,000. They believe the increase is because they have taken him off of all meds and started administering steroids. When his counts reach 75,000 a new treatment path will be discussed and implemented. Hopefully sooner than later.
Poor Dallas seems to be bored out of his mind. He feels good and was finally allowed to go out for a walk yesterday but will not be released from the hospital until his counts reach 20,000. Dr. Smith (NO) seems to think that will be tomorrow or Wednesday if the rise continues. Until then he will have to occupy his time with episodes of Jerry Springer and Oprah.
That's all for now. Hopefully tomorrow will bring a post of hospital exodus.
-J
Friday, March 6, 2009
Message Board for Dallas
Aside from leaving messages on here for Dallas, I also encourage everyone to use the Shands website:
http://www.shands.org/Public/message/default.asp
Dallas will probably be there for the rest of the weekend so anything you send via that site will definitely reach him.
I know he would appreciate hearing from you all!
-J
http://www.shands.org/Public/message/default.asp
Dallas will probably be there for the rest of the weekend so anything you send via that site will definitely reach him.
I know he would appreciate hearing from you all!
-J
Platelets Need Attention Too
Everyone,
I've started updating Dallas' blog again with updates I've sent to friends since our smooth sailing has apparently ended.
I spoke too soon when I wrote last and said Dallas was reacting well to treatment. With the new drug that has been introduced into his bi-weekly infusions it takes 2-3 days for the side-effects to take hold. The weekend following that treatment (the weekend of Valentine's Day) he got sick, lost his appetite, felt constant nausea and had muscle aches that lasted for about two days.
Since then he was doing fairly well. He continued back with his classes and working regularly. However, on Monday he went for his weekly blood work, which monitors red and white cell and platelet levels, and found that his platelet level was down. Platelets help to clot the blood and prevent excessive bleeding if you have an injury, nosebleed, etc. He had two very heavy nosebleeds this weekend that took a long time to stop which now makes sense (he's always had one here and there and they have become more frequent during the past few years of treatment). An average person's platelet level is anywhere from 150,000 to 400,000. His was at 15,000. A transfusion was ordered for Tuesday. The next day his counts had barely risen. Yesterday they gave him another transfusion. His level still fell to 9,000. 8,000 is where it becomes extremely critical.
His oncologist, who is at Shands about 2.5 hours from Tallahassee, wanted to admit him there immediately so my parents drove him down last night. Since then his levels are up to 14,000, still not good. The problem is the transfusions are not working, the blood seems to be "eating them up". More tests are being done to make sure there is no internal bleeding, especially around the brain.
I've done some research on my own to see what the possible next steps would be but I'm not that bright so this pretty much came up fruitless. Obviously finding the cause of the constant drop in the level is key to determining what how to move forward. They don't seem to think is it the new drug since he hasn't had that since the middle of February (that drug is only given every other infusion). The drug that is given every bi-weekly infusion started in October so that is a very unlikely culprit as well.
The confusing thing is that he seems to feel fine. He had a headache briefly last night when the levels were at their lowest but that went away before he was admitted to Shands. This morning he has some bruising and little red spots which are very common when someone has levels this low. But again, he seems to feel fine and still has his appetite. Shands is an amazing facility with lots of good food and he's definitely taking advantage.
Today he is going be doing a lot of testing. A CAT Scan will be done to check for internal bleeding and a host of other tests will be conducted until the cause is found.
I'm afraid that's the only information I have for now. I made arrangements weeks ago to go back to Tallahassee this Wednesday to hang out with him after his next infusion (which includes the drug that made him sick a month ago) in case he felt terrible. As of right now I will stick with those plans. I'll update you all when we hear something, which hopefully will be soon.
Much love,
Jessie
I've started updating Dallas' blog again with updates I've sent to friends since our smooth sailing has apparently ended.
I spoke too soon when I wrote last and said Dallas was reacting well to treatment. With the new drug that has been introduced into his bi-weekly infusions it takes 2-3 days for the side-effects to take hold. The weekend following that treatment (the weekend of Valentine's Day) he got sick, lost his appetite, felt constant nausea and had muscle aches that lasted for about two days.
Since then he was doing fairly well. He continued back with his classes and working regularly. However, on Monday he went for his weekly blood work, which monitors red and white cell and platelet levels, and found that his platelet level was down. Platelets help to clot the blood and prevent excessive bleeding if you have an injury, nosebleed, etc. He had two very heavy nosebleeds this weekend that took a long time to stop which now makes sense (he's always had one here and there and they have become more frequent during the past few years of treatment). An average person's platelet level is anywhere from 150,000 to 400,000. His was at 15,000. A transfusion was ordered for Tuesday. The next day his counts had barely risen. Yesterday they gave him another transfusion. His level still fell to 9,000. 8,000 is where it becomes extremely critical.
His oncologist, who is at Shands about 2.5 hours from Tallahassee, wanted to admit him there immediately so my parents drove him down last night. Since then his levels are up to 14,000, still not good. The problem is the transfusions are not working, the blood seems to be "eating them up". More tests are being done to make sure there is no internal bleeding, especially around the brain.
I've done some research on my own to see what the possible next steps would be but I'm not that bright so this pretty much came up fruitless. Obviously finding the cause of the constant drop in the level is key to determining what how to move forward. They don't seem to think is it the new drug since he hasn't had that since the middle of February (that drug is only given every other infusion). The drug that is given every bi-weekly infusion started in October so that is a very unlikely culprit as well.
The confusing thing is that he seems to feel fine. He had a headache briefly last night when the levels were at their lowest but that went away before he was admitted to Shands. This morning he has some bruising and little red spots which are very common when someone has levels this low. But again, he seems to feel fine and still has his appetite. Shands is an amazing facility with lots of good food and he's definitely taking advantage.
Today he is going be doing a lot of testing. A CAT Scan will be done to check for internal bleeding and a host of other tests will be conducted until the cause is found.
I'm afraid that's the only information I have for now. I made arrangements weeks ago to go back to Tallahassee this Wednesday to hang out with him after his next infusion (which includes the drug that made him sick a month ago) in case he felt terrible. As of right now I will stick with those plans. I'll update you all when we hear something, which hopefully will be soon.
Much love,
Jessie
Thursday, February 12, 2009
Next Plan of Attack
Everyone,
It took longer than we were expecting to hear back from Dallas' NO (Dr. Smith) about what the next step should be; however, she was at a conference in Atlanta and was able to discuss with other doctors Dallas' condition and get their feedback on what to do next.
We are going to begin Avastin plus Carboplatin, which was actually started today (February 12th). When Dallas did his intense chemo back at the beginning of 2007 he did another platin drug which he responded well to. This is why they decided to keep him on Avastin and try Carboplatin instead of the CPT drug...I have no idea what I'm talking about by the way.
They are discussing some other treatment options that my mom has done research on and which can hopefully be used as a backup. There is also a trial she just discovered they are doing at Duke on immunotherapy...or vaccines. Always before Dallas didn't qualify for vaccine therapy because to develop a vaccine, they had to be able to get enough tumor material to work with (and as many of you know his tumor is inoperable). It seems now that they are developing the vaccines through blood samples. Dallas' tumor may be too advanced to go this route, but we're going to discuss it with his NO in any case.
So, his bi-weekley schedule of going to Shands in Gainesville for 1 day of infusion will continue for the time being. His, along with David obviously, 21st birthday is coming up at the end of April. As long as he reacts well to this chemo (some possible side effects include a stronger attack on the immune system - aka low blood counts, loss of hair, etc.) we are planning on doing a trip to New Orleans the first week of May for their annual Jazz Festival or possibly a trip to DC to see their most favoritist sister ever.
My family and I appreciate all of the kind words you all have sent throughout this and the past two and a half years. Without your support this would be an impossible road to travel.
Best wishes,
Jessie
It took longer than we were expecting to hear back from Dallas' NO (Dr. Smith) about what the next step should be; however, she was at a conference in Atlanta and was able to discuss with other doctors Dallas' condition and get their feedback on what to do next.
We are going to begin Avastin plus Carboplatin, which was actually started today (February 12th). When Dallas did his intense chemo back at the beginning of 2007 he did another platin drug which he responded well to. This is why they decided to keep him on Avastin and try Carboplatin instead of the CPT drug...I have no idea what I'm talking about by the way.
They are discussing some other treatment options that my mom has done research on and which can hopefully be used as a backup. There is also a trial she just discovered they are doing at Duke on immunotherapy...or vaccines. Always before Dallas didn't qualify for vaccine therapy because to develop a vaccine, they had to be able to get enough tumor material to work with (and as many of you know his tumor is inoperable). It seems now that they are developing the vaccines through blood samples. Dallas' tumor may be too advanced to go this route, but we're going to discuss it with his NO in any case.
So, his bi-weekley schedule of going to Shands in Gainesville for 1 day of infusion will continue for the time being. His, along with David obviously, 21st birthday is coming up at the end of April. As long as he reacts well to this chemo (some possible side effects include a stronger attack on the immune system - aka low blood counts, loss of hair, etc.) we are planning on doing a trip to New Orleans the first week of May for their annual Jazz Festival or possibly a trip to DC to see their most favoritist sister ever.
My family and I appreciate all of the kind words you all have sent throughout this and the past two and a half years. Without your support this would be an impossible road to travel.
Best wishes,
Jessie
Friday, February 6, 2009
That Timmy Can Be A Real Jerk
Everyone,
It has been over a year. A year filled with good and bad scans, but an amazing year for Dallas in any case. He did really well in school in the Spring and Fall of '08, went to the Keys on a week long vacation over Christmas, got to see the the Gators win another National Championship game in Miami this January and was able to spend a week with his favorite sister in DC this past summer. Oh to be 20 again.
So, on to the Timmy update:
As most of you know, December's MRI showed a reduction in the size of the tumor which meant it was positively reacting to his current Chemo regimen of Avastin/CPT-11. Even his Neurological Oncologist, Dr. Smith, was pleasantly surprised.
Dallas' MRI Tuesday, February 3rd, however, was not so good. He has at least 2 new areas in the temporal lobe (Google it because I'll butcher any explanation) where tumor cells have migrated by way of white matter pathways from the original tumor site. Dr. Smith stopped all treatment Tuesday (he did not get his scheduled Avastin/CPT-11 infusion nor did he start his monthly dose of Temodar) while we search for a new treatment plan. Dr. Smith is going to talk with Dr. Friedman (Duke) and Dr. Fine (NCI) today as well as with another doctor at MD Andersen to see what their recommendations are for a new treatment and how to proceed.
Meanwhile, Dallas remains without symptoms.....in fact, he seems better than ever. Needless to say, we were all fairly shocked to find that Timmy wasn't going to continue to cooperate.
Hopefully, these amazing doctors will find a new path for us to travel and Dallas will continue to live a full life beyond the constraints Timmy layed out for him more than 2 years ago.
That's all for now. I'll try and keep you all updated over the next week or so as more news becomes available.
Love,
Jessie
It has been over a year. A year filled with good and bad scans, but an amazing year for Dallas in any case. He did really well in school in the Spring and Fall of '08, went to the Keys on a week long vacation over Christmas, got to see the the Gators win another National Championship game in Miami this January and was able to spend a week with his favorite sister in DC this past summer. Oh to be 20 again.
So, on to the Timmy update:
As most of you know, December's MRI showed a reduction in the size of the tumor which meant it was positively reacting to his current Chemo regimen of Avastin/CPT-11. Even his Neurological Oncologist, Dr. Smith, was pleasantly surprised.
Dallas' MRI Tuesday, February 3rd, however, was not so good. He has at least 2 new areas in the temporal lobe (Google it because I'll butcher any explanation) where tumor cells have migrated by way of white matter pathways from the original tumor site. Dr. Smith stopped all treatment Tuesday (he did not get his scheduled Avastin/CPT-11 infusion nor did he start his monthly dose of Temodar) while we search for a new treatment plan. Dr. Smith is going to talk with Dr. Friedman (Duke) and Dr. Fine (NCI) today as well as with another doctor at MD Andersen to see what their recommendations are for a new treatment and how to proceed.
Meanwhile, Dallas remains without symptoms.....in fact, he seems better than ever. Needless to say, we were all fairly shocked to find that Timmy wasn't going to continue to cooperate.
Hopefully, these amazing doctors will find a new path for us to travel and Dallas will continue to live a full life beyond the constraints Timmy layed out for him more than 2 years ago.
That's all for now. I'll try and keep you all updated over the next week or so as more news becomes available.
Love,
Jessie
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