Well Trish is resting uncomfortably at Aunt Mary's house today. We heard from Carolyn, the Bone Marrow Tranplant Manager, and they expect to move forward with the first choice donor. She is offering him harvest dates between July 5-11 (the boys will be at Hopkins Lacrosse Camp July 8-11), so we should all be together around that time. We will likely do the pre-eval stuff next week or the week after, including one more bone marrow biopsy. YUCK!
Everyone is sill trying to get Trish a week back in Florida before the transplant.
Our neighbor Sandy, sent me a copy of this song below, it is very appropriate for Trish.... (click on the link to play the song or just read the words).
http://us.video.aol.com/player/launcher?ar=us_en_audio_748x541_full&mode=0&pmmsid=1894330&referer=http%253A//music.aol.com/artist/craig-morgan/430690/main
Artist/Band: Morgan Craig
Lyrics for Song: Tough
Lyrics for Album: Little Bit of Life
She’s in the kitchen at the crack of dawn
Bacon’s on, coffee’s strong
Kids running wild, taking off their clothes
If she’s a nervous wreck, well it never shows
Takes one to football and one to dance
Hits the Y for aerobics class
Drops by the bank, stops at the store
Has on a smile when I walk through the door
The last to go to bed, she’ll be the first one up
And I thought I was tough
Chorus
She’s strong, pushes on, can’t slow her down
She can take anything life dishes out
There was a time Back before she was mineWhen I thought I was toughWe sat there five years ago
The doctors let us know, the test showed
She’d have to fight to live, I broke down and cried
She held me and said it’s gonna be alright
She wore that wig to church
Pink ribbon pinned there on her shirt
No room for fear, full of faith
Hands held high singing Amazing Grace
Never once complained, refusing to give up
And I thought I was tough
Chorus
She’s strong, pushes on, can’t slow her down
She can take anything life dishes out
There was a time Back before she was mine
When I thought I was tough
She’s a gentle word, the sweetest kiss
A velvet touch against my skin
I’ve seen her cry, I’ve seen her break
But in my eyes, she’ll always be strong
There was a time
Back before she was mine
When I thought I was tough
Thursday, May 31, 2007
Wednesday, May 30, 2007
From Great Tuesday to Discharge Wednesday....
So yesterday we got the great news that the latest chemo had worked. Today, Trish got the news that she was being discharged. We unloaded the room and took off just after 1 or 2 pm this afternoon. When we arrived in Havre de Grace - Trish took a nap. She was up again by the time I returned from the pharmacy with her meds.
She can be reached at Aunt Mary's probably for much of June. If you want to give her a call, send me an e-mail, I don't want to post the number at the house.
The transplant won't be until about July, so we will be starting out going to the out-patient clinic these next few weeks. More to come.
She can be reached at Aunt Mary's probably for much of June. If you want to give her a call, send me an e-mail, I don't want to post the number at the house.
The transplant won't be until about July, so we will be starting out going to the out-patient clinic these next few weeks. More to come.
Tuesday, May 29, 2007
It's a GREAT Tuesday
So, I was in the elevator on Trish's floor, heading down to mail some letters and get some lunch. When Dr. Griffiths pops out of the elevator next to me and sees me and waves hello. I immediately jump out of the elevator as the doors are closing, giving the folks in my elevator a startle.
I walked and talked with Dr. Griffiths all the way to Trish's room. Trish's Mom and I saw her earlier in the morning as we were driving in and she was walking across the street.
Anyhoo -- Let me cut to the chase -- we discussed several things, Dr. Griffiths then stopped off at the nurses station to check the computer and call pathology to check on official word on Trish's bone marrow biopsy. But she couldn't get through.
While she was visiting with Trish, She got paged to the phone. She ran out quickly and came back in with a big smile. It was word from pathology that's Trish's Cytogenetics were normal. A few high fives later......
Trish is in remission!
So Dr. G had already called the BMT case manager on Friday and asked her to schedule harvest from the donor in 4- 6 weeks, but now it is real. Barring any more strange complications or complexities -- hoping we still have enough insurance that they will go ahead, even though we will be far short of what we need to complete the transplant, this should be it. By July we should be where we hoped to be in Feb or March - finally. Trish will still have a long road ahead of her, but we are finally on our way.
Current health report -- Trish is taking a nap, I am working and her Mom is reading a magazine. We are just waiting for all the pre-requisites to be completed for discharge and it could be as early as tomorrow. Trish still has some pain and will for a little while.
The plan is to wait 4-6 weeks than go straight to transplant. Dr. G will not commit to letting her leave her Havre de Grace home to visit Florida, but hopes she will get a week in Florida prior to transplant. Post transplant will be at least 2 months inpatient, 2-3 months outpatient and some stays in if complications arise.
BUT today is a very good day, my beautiful bride is in remission again.
I walked and talked with Dr. Griffiths all the way to Trish's room. Trish's Mom and I saw her earlier in the morning as we were driving in and she was walking across the street.
Anyhoo -- Let me cut to the chase -- we discussed several things, Dr. Griffiths then stopped off at the nurses station to check the computer and call pathology to check on official word on Trish's bone marrow biopsy. But she couldn't get through.
While she was visiting with Trish, She got paged to the phone. She ran out quickly and came back in with a big smile. It was word from pathology that's Trish's Cytogenetics were normal. A few high fives later......
Trish is in remission!
So Dr. G had already called the BMT case manager on Friday and asked her to schedule harvest from the donor in 4- 6 weeks, but now it is real. Barring any more strange complications or complexities -- hoping we still have enough insurance that they will go ahead, even though we will be far short of what we need to complete the transplant, this should be it. By July we should be where we hoped to be in Feb or March - finally. Trish will still have a long road ahead of her, but we are finally on our way.
Current health report -- Trish is taking a nap, I am working and her Mom is reading a magazine. We are just waiting for all the pre-requisites to be completed for discharge and it could be as early as tomorrow. Trish still has some pain and will for a little while.
The plan is to wait 4-6 weeks than go straight to transplant. Dr. G will not commit to letting her leave her Havre de Grace home to visit Florida, but hopes she will get a week in Florida prior to transplant. Post transplant will be at least 2 months inpatient, 2-3 months outpatient and some stays in if complications arise.
BUT today is a very good day, my beautiful bride is in remission again.
Sunday, May 27, 2007
Sunday Update
Trish had a lot of visitors today and a lot of time to relax on her own. Aunt Mary, Barry, Marian and Lauren (from Alabama) and her Mom all came to visit today. Trish was feeling pretty good and went on several walks on her own today. Her blood counts are doing great!! I updated the counts page with her numbers and some of them are in the normal person range (low end for you and I). She has really been through a lot and we haven't even gotten to the real deal --- the transplant. Our parents have been through a lot -- having to spend time raising teenagers for the second time so I can take care of Trish while working from Baltimore. Many people are given burdens similar and even more weighty than ours, but until you travel in these footsteps it is truly hard to understand.
I often tell the story of the retired minister we met during our first round of chemo. He pulled me over one day after getting some bad news about his wife's condition. He needed to talk with someone - someone who understood what he was feeling. I was happy to be at the right place, at the right time. One of the things he told me was that he was going to go home and write a letter to everyone he had counselled or ministered to over the years who had dealt with a family diagnosis of cancer and he was going to apologize to each of them. Now dealing with his own wife's Leukemia diagnosis and bad news, he understood for the first time what these folks had been dealing with and he knew that nothing he said or did could have really helped them. It was a sad and serious realization for both of us.
My wish for all who are reading this, is that you may never truly understand this feeling.
I often tell the story of the retired minister we met during our first round of chemo. He pulled me over one day after getting some bad news about his wife's condition. He needed to talk with someone - someone who understood what he was feeling. I was happy to be at the right place, at the right time. One of the things he told me was that he was going to go home and write a letter to everyone he had counselled or ministered to over the years who had dealt with a family diagnosis of cancer and he was going to apologize to each of them. Now dealing with his own wife's Leukemia diagnosis and bad news, he understood for the first time what these folks had been dealing with and he knew that nothing he said or did could have really helped them. It was a sad and serious realization for both of us.
My wish for all who are reading this, is that you may never truly understand this feeling.
Saturday, May 26, 2007
Saturday Update
Sorry for those of you who have been checking the web site today (Sat.) and wondering what happened. I have been with Trish all day, but just after I started to get ready to write the update, I fell asleep in the chair (Thanks, Rick for reminding me to make an update).
Trish did well today. She left the ICU just after 10am this morning. When I arrived in the ICU to visit she was sitting up in a chair and practicing her breathing exercises. After visiting for a while, I left the ICU so I could make some phone calls and let the "Moms" know she was all right. When I got back to ICU, they had already moved her to her room.
She's in a lot of pain, but doing well. She's hitting her PCA (pain button) way more than I have ever seen her use it. She really wants to go for a walk, but the farthest she goes is from the bed to the chair at the moment. Normal post op for this procedure is about 3 days, but we'll see what she ends up staying, everybody is focused on getting her out as soon as possible.
We should also have biopsy results sometime next week - it will likely be delayed because of the holiday -- but I know Dr. Griffiths, if there is a way to get them faster she will. She called the on-call hematology team several times to get an update on Trish.
Tomorrow Trish's Mom comes in and her cousins from Alabama are here as well (Marion, Barry & Lauren). It will be a big visit day/week this week.
Dr. Anderson came by tonight as well, she said the normal recovery time is 4- 6 weeks, but as long as the infection is cleared up - the can proceed with the transplant before that.
Look for lots of news this week. Thanks for all the prayers, emails, etc.
Trish did well today. She left the ICU just after 10am this morning. When I arrived in the ICU to visit she was sitting up in a chair and practicing her breathing exercises. After visiting for a while, I left the ICU so I could make some phone calls and let the "Moms" know she was all right. When I got back to ICU, they had already moved her to her room.
She's in a lot of pain, but doing well. She's hitting her PCA (pain button) way more than I have ever seen her use it. She really wants to go for a walk, but the farthest she goes is from the bed to the chair at the moment. Normal post op for this procedure is about 3 days, but we'll see what she ends up staying, everybody is focused on getting her out as soon as possible.
We should also have biopsy results sometime next week - it will likely be delayed because of the holiday -- but I know Dr. Griffiths, if there is a way to get them faster she will. She called the on-call hematology team several times to get an update on Trish.
Tomorrow Trish's Mom comes in and her cousins from Alabama are here as well (Marion, Barry & Lauren). It will be a big visit day/week this week.
Dr. Anderson came by tonight as well, she said the normal recovery time is 4- 6 weeks, but as long as the infection is cleared up - the can proceed with the transplant before that.
Look for lots of news this week. Thanks for all the prayers, emails, etc.
Friday, May 25, 2007
Post Surgery report
Dr. Anderson just came by to speak with me at about 7:10.
Trish will spend the night in ICU tonight. They ended up doing a full hysterectomy. They had to administer more platlets to Trish during the surgery. The Dr. says Trish was stable the whole time during the surgery and is doing well now. I should be able to visit her around 8:30pm tonight.
She'll have at least a few days of recovery and than hopefully get to come "home" to Aunt Mary's, where we should have biopsy results and hopefully be able to move on....Major surgery and ICU time doesn't help our insurance situation any, but at least it appears that she will be ok and that is really what I am concerned about. Thank you for your support and prayers.
Trish will spend the night in ICU tonight. They ended up doing a full hysterectomy. They had to administer more platlets to Trish during the surgery. The Dr. says Trish was stable the whole time during the surgery and is doing well now. I should be able to visit her around 8:30pm tonight.
She'll have at least a few days of recovery and than hopefully get to come "home" to Aunt Mary's, where we should have biopsy results and hopefully be able to move on....Major surgery and ICU time doesn't help our insurance situation any, but at least it appears that she will be ok and that is really what I am concerned about. Thank you for your support and prayers.
Mid-Surgery Update
The Nurse Practitioner from the ob-gyn team came out about 30 minutes ago to give me an update -- they were about an hour into the procedure when she came out.
The bone marrow biopsy was first. It went well.
They than started the laproscopic surgery. The infection was pretty messy, after cleaning up the area, it was still not ideal for laproscopic surgery -- the area was "matted down" and they decided to actually open her up for real surgery. She said the incision will be much like a C-section delivery, in fact they will try to use her actual C-section scar as the dotted line to cut on.
The surgery though will now take several hours more before they are done. Look for anoher post when they are finished. We knew this was a possibility, but were really hoping that it wouldn't be the reality.
The bone marrow biopsy was first. It went well.
They than started the laproscopic surgery. The infection was pretty messy, after cleaning up the area, it was still not ideal for laproscopic surgery -- the area was "matted down" and they decided to actually open her up for real surgery. She said the incision will be much like a C-section delivery, in fact they will try to use her actual C-section scar as the dotted line to cut on.
The surgery though will now take several hours more before they are done. Look for anoher post when they are finished. We knew this was a possibility, but were really hoping that it wouldn't be the reality.
Surgery Update
They came and got Trish a bit early for her surgery....but by 2pm they kicked me out of he waiting area and brought her into the surgical suite. They will do her bone marrow biopsy first and than the gyn procedure. She may be in surgery till about 5pm and than recovery for an hour or two before heading back to her room. She's in her usual good spirits.
Look for an update on the surgery some time this early evening.
Look for an update on the surgery some time this early evening.
Thursday, May 24, 2007
OK one more time...update
Surgery is officially scheduled for 2pm tomorrow (Friday) and NOT today...
Two reasons, Trish's platlet level is ok but borderline for surgery and they will get some platlets into her tonight and they will also try to insure that Trish can get the bone marrow biopsy tomorrow while she is out.
Still good news and better planned than hurried today.....Whew! things change by the nano second around here, but all for the good.
Two reasons, Trish's platlet level is ok but borderline for surgery and they will get some platlets into her tonight and they will also try to insure that Trish can get the bone marrow biopsy tomorrow while she is out.
Still good news and better planned than hurried today.....Whew! things change by the nano second around here, but all for the good.
Things change fast around here!
SO at three o'clock....the GYN resident comes in and says --- looks like we will do it tomorrow -- we have a guaranteed operating room at 2pm.....and tells Trish she can have clear liquids in the next 24 hours, no real food......
Than about five minutes later - a nurse comes running in and say " You didn't drik anything yet did you? They have an OR now and will be coming to get you.....
So sometime very soon we expect transport to show up and take her to surgery (today before 4pm). They are also trying to get Dr. Griffiths to do the bone marrow biopsy after they sedate her.....We have hit the "get it done - medical lottery" -- now all we need is to hit a real money lottery to pay for the transplant......
Look for a post surgical post in the next few hours!
Than about five minutes later - a nurse comes running in and say " You didn't drik anything yet did you? They have an OR now and will be coming to get you.....
So sometime very soon we expect transport to show up and take her to surgery (today before 4pm). They are also trying to get Dr. Griffiths to do the bone marrow biopsy after they sedate her.....We have hit the "get it done - medical lottery" -- now all we need is to hit a real money lottery to pay for the transplant......
Look for a post surgical post in the next few hours!
Wednesday, May 23, 2007
Wednesday - Here's the plan
Ok - so after starving Trish this morning, they let us know that they would not do a procedure on her today and she enjoyed some pasta left over from dinner and Aunt Mary's zucchini pie.
She is scheduled for surgery tomorrow - maybe -- she is a "write-in" meaning, if an OR becomes available they will do it tomorrow, and if they don't start by 3pm - it will be Friday for sure. So tomorrow will be another day of not eating till at least 3pm, that might end in nothing being gained.
Now you may be asking "surgery"? What are they going to do...well we're not sure, but the strategy is to get her ready for the transplant as quickly as possible and that means they have shifted from "draining" things to "removing" things. It will be laproscopic surgery, so it will be as minimally invasive as possible and the goal will be to remove as little as possible. Bottom line is she needs to have "no infected nothing" for transplant.
That's about it for Trish's update today, she's in good spirits and just wants to get moving on.
She is scheduled for surgery tomorrow - maybe -- she is a "write-in" meaning, if an OR becomes available they will do it tomorrow, and if they don't start by 3pm - it will be Friday for sure. So tomorrow will be another day of not eating till at least 3pm, that might end in nothing being gained.
Now you may be asking "surgery"? What are they going to do...well we're not sure, but the strategy is to get her ready for the transplant as quickly as possible and that means they have shifted from "draining" things to "removing" things. It will be laproscopic surgery, so it will be as minimally invasive as possible and the goal will be to remove as little as possible. Bottom line is she needs to have "no infected nothing" for transplant.
That's about it for Trish's update today, she's in good spirits and just wants to get moving on.
Tuesday, May 22, 2007
Long Tuesday....
Today ended up being a very long day with very few results....We thought they were going to take Trish down first thing this morning for the procedure to drain some fluids, but they ended up not taking her until around noon.
The first attempt at the procedure was not successful. So they took a CT Scan and tried again. The second attempt also did not produce the results they were looking for. It is apparently hard to reach the area that they are trying to reach through normal body orifices.
So tomorrow, Trish will head to the main hospital for the procedure, using some more real expensive equipment to guide the drain line. The difference this time is that they will cut her open and go through the skin to reach the area in question.
I guess I must have missed something the other day -- but they will keep the "drain" attached to Trish for a few days and remove it once they get the results they need. This looks to further delay our moving on with the transplant and put Trish at risk of relapsing before it is cleaned up -- which would really suck...
Trish is resting comfortably tonight. Tired from the ordeal and the twice sedated day. She should sleep well tonight. Before starting to sleep she ate some of Aunt Mary's Zucchinni pie. She had been NPO all day, so it was the first food she had and she will be NPO starting at midnight, so I hope she gets the procedure fairly early in the day.
The goal would be to clean up this fluid and infection stuff and move on to the bone marrow biopsy and transplant. I don't know anything for sure, but if I were to guess the absolute earliest Trish would get biopsied is next week sometime. The other thing I don't know is how long we will have to wait for Trish to recover from all these procedures and antibiotics before we could safely move to transplant. If they chemo'ed her up for transplant with this infection active, I am sure that it would be bad news.
So, the one thing Trish and I are getting used to is waiting. Being patient at all turns. Hoping that tomorrow's news is better than today's. Trish is so amazing taking things as they come, but she is also starting to show some signs of wear and frailty from the process. The thing about AML is that there is no standard of care. It is all a guessing game on what the best course of action to take will be and each patient reacts differently to the attempts to cure him or her. The allogeneic transplant that comes with its own serious risks, is the best cure.
In our case, would it have been better to get HiDac first? It sure seems that way now, but the reality is the CloSi may have opened her up to the remission powers of the HiDac -- we will never know. I just hope that the remission, I think she is in, can last long enough to take us all the way....
The first attempt at the procedure was not successful. So they took a CT Scan and tried again. The second attempt also did not produce the results they were looking for. It is apparently hard to reach the area that they are trying to reach through normal body orifices.
So tomorrow, Trish will head to the main hospital for the procedure, using some more real expensive equipment to guide the drain line. The difference this time is that they will cut her open and go through the skin to reach the area in question.
I guess I must have missed something the other day -- but they will keep the "drain" attached to Trish for a few days and remove it once they get the results they need. This looks to further delay our moving on with the transplant and put Trish at risk of relapsing before it is cleaned up -- which would really suck...
Trish is resting comfortably tonight. Tired from the ordeal and the twice sedated day. She should sleep well tonight. Before starting to sleep she ate some of Aunt Mary's Zucchinni pie. She had been NPO all day, so it was the first food she had and she will be NPO starting at midnight, so I hope she gets the procedure fairly early in the day.
The goal would be to clean up this fluid and infection stuff and move on to the bone marrow biopsy and transplant. I don't know anything for sure, but if I were to guess the absolute earliest Trish would get biopsied is next week sometime. The other thing I don't know is how long we will have to wait for Trish to recover from all these procedures and antibiotics before we could safely move to transplant. If they chemo'ed her up for transplant with this infection active, I am sure that it would be bad news.
So, the one thing Trish and I are getting used to is waiting. Being patient at all turns. Hoping that tomorrow's news is better than today's. Trish is so amazing taking things as they come, but she is also starting to show some signs of wear and frailty from the process. The thing about AML is that there is no standard of care. It is all a guessing game on what the best course of action to take will be and each patient reacts differently to the attempts to cure him or her. The allogeneic transplant that comes with its own serious risks, is the best cure.
In our case, would it have been better to get HiDac first? It sure seems that way now, but the reality is the CloSi may have opened her up to the remission powers of the HiDac -- we will never know. I just hope that the remission, I think she is in, can last long enough to take us all the way....
Monday, May 21, 2007
Quick Monday morning blast of good news
Just spoke with Trish, and it's all good.
Her ANC is above 1000 for the first time since we arrived here in February. This is fantastic news!! Trish asked me to email Dr. G her counts yesterday (she's sill on vacation) and she emailed me back last night at 2am, very excited to see Trish's counts and excited to know that she should be back to do Trish's biopsy.
The doctors came in this morning and asked Trish if she had eaten breakfast. She said yes, she ate for the first time this week. That was actually bad news for the doctors this morning. They wanted to do one more procedure to help insure that they had cleared the infections, but will have to wait till tomorrow. Trish may be out of the hospital by Wednesday.
She's getting some red cells today, procedure tomorrow and she should be home (Aunt Mary's) before the end of the week.
All good news this morning!!
Her ANC is above 1000 for the first time since we arrived here in February. This is fantastic news!! Trish asked me to email Dr. G her counts yesterday (she's sill on vacation) and she emailed me back last night at 2am, very excited to see Trish's counts and excited to know that she should be back to do Trish's biopsy.
The doctors came in this morning and asked Trish if she had eaten breakfast. She said yes, she ate for the first time this week. That was actually bad news for the doctors this morning. They wanted to do one more procedure to help insure that they had cleared the infections, but will have to wait till tomorrow. Trish may be out of the hospital by Wednesday.
She's getting some red cells today, procedure tomorrow and she should be home (Aunt Mary's) before the end of the week.
All good news this morning!!
Sunday, May 20, 2007
Sunday Update -- Have you seen those counts?
Trish is napping and I am working, but thought I would take a break and post an update. Trish's counts are still on the rise -- slow and steady and no fall-backs. This is much more encouraging than the counts after CloSi. If she wasn't having the other issues, I'm sure we would have the transplant prep well under way by now. It could take much of this next week to get the gyn issues cleaned up and get us back on the transplant trail. Trish was so pleased with her blood results that she asked me to email Dr G whose on vacation till Wednesday to let her know how well she was doing.
This morning Trish went for a CT scan, I guess just to confirm all is well post-op. She'll get platlets some time today and I'm guessing she'll get a bag of reds sometime in the next 24 hours, her hematacrit is getting low and she's tired.
I really don't like being on this floor - I feel I need to be here to insure that she gets half of the care she gets on any ward on the 5th floor. But you know Trish, she doesn't complain -- she's a trooper.
This morning Trish went for a CT scan, I guess just to confirm all is well post-op. She'll get platlets some time today and I'm guessing she'll get a bag of reds sometime in the next 24 hours, her hematacrit is getting low and she's tired.
I really don't like being on this floor - I feel I need to be here to insure that she gets half of the care she gets on any ward on the 5th floor. But you know Trish, she doesn't complain -- she's a trooper.
Saturday, May 19, 2007
Saturday and the procedure is done
The procedure was scheduled for 10am -- Trish's ANC was at about 600, so her counts are really coming up nicely. They came and got us just after 10:30 and she went into the OR about 10:45. At about 11:30 they called the waiting room to tell me they were just getting started. About 20 minutes later they called to tell me she was done.
The doctor told me everything went well, nothing to be concerned about. It will likely be a few more days of waiting to see if they infections and inflamation goes down now that the polyp has been removed. From a Leukemia standpoint I am very opimistic that the HiDac did the trick based on what we are seeing -- I am just hoping we can get to transplant quickly -- time and money are in short supply.
Trish is resting back in her room, still sleepy from the anesthesia. Her room number is posted on the left, but I would wait till tomorrow afternoon to call her.
The doctor told me everything went well, nothing to be concerned about. It will likely be a few more days of waiting to see if they infections and inflamation goes down now that the polyp has been removed. From a Leukemia standpoint I am very opimistic that the HiDac did the trick based on what we are seeing -- I am just hoping we can get to transplant quickly -- time and money are in short supply.
Trish is resting back in her room, still sleepy from the anesthesia. Her room number is posted on the left, but I would wait till tomorrow afternoon to call her.
Friday, May 18, 2007
Trish's procedure is tentatively scheduled for 10am tomorrow (saturday) pending her counts comin up to 500 -- the doctors are optimistic that they will be up. The ANC count was at 313 today. I am hopeful that we can get this issue cleaned up and move on with the transplant. My bigger worry is the insurance and I know many of you are working on that. Trish is still in fairly good spirits considering, we are both pretty well worn out and frazzled. She is such a trooper.
Thursday, May 17, 2007
Thursday - plan on the table
Today we found out what is going on and what the plan is....The MRI showed that Trish has a uterine polyp and infections in the falopian tubes. The GYN docs will wait till Trish's Neutrophils reach 500 and then do a procedure to remove the polyp. They expect her to heal quickly after the polyp is removed. They are hoping her counts will reach the required levels by Saturday -- if they don't it will be Monday. We heard from Dr. Griffiths and she'll be back on Wednesday, so there's a good chance she will be able to do the bone marrow biopsy. Trish's counts are coming back in a much "more normal" pattern this time and that gives me great optimism that she will get to transplant after we get through this little detour. The only problem is that this little detour will further jeopardize our insurance resources for the transplant. I was speaking with one of the hospital billing folks earlier this week and she said AML is probably the toughest diagnosis -- lots of issues along the way -- solid organ transplants are easier before and trouble after transplant --- blood cancers are just a pain all along. Thanks to everyone that has emailed Trish recently, we sat today and I read her all her mail to her. This will be a busy weekend. Lots going on and I know we have lots of prayers from lots of folks - thanks.
Wednesday, May 16, 2007
Late night Wednesday Post
Trish didn't feel great today, but she had her moments. She need red cells at the start of the day and ended the day with a dose of platlets. Her white count dropped a little and her Neutrophils went up. Neither moved in a truly significant amount. The counts page is updated if you want to take a peak. She is still an inpatient and now on 4B -- we never have been on this floor or ward before and I can't wait to get back to 5 next time we get admitted. The level of service is just not the same. I am hoping this will be a short admission, but there is no indication of what Trish's problem really is or how it will be resolved. The hematological team ordered an MRI tonight and we'll know those results in the morning. The main reason was since Trish is a bone marrow transplant candidate they don't want to give her all the antibiotics they are giving her if they don't really need too. The MRI should hopefully give us more info on what is causing the issue. I hope they can discover it quick and get her out of the hospital each day puts us deeper in the whole for having insurance available for her transplant. I hear that the efforts to raise funds back home has started in earnest -- Words will never be able to express our gratitude for your generousity and efforts on Trish's behalf. God Bless you all and good night.
wednesday mid day status update
Trish hasn't gotten a whole lot better overnight -- but no worse either. They are no closer o figuring out what to do abou her issues. They will do an MRI today to help figure it out. She got a bag of red blood this morning.
She was moved down to the fourth floor today. Good thing I didn't publish that phone number last night. Once there is more news I will post it. I am busy workng today while Trish rests. I was going into the office, but I'll be more productive at Trish's side today and since she is in a new area, I can watch out for her as well.
She was moved down to the fourth floor today. Good thing I didn't publish that phone number last night. Once there is more news I will post it. I am busy workng today while Trish rests. I was going into the office, but I'll be more productive at Trish's side today and since she is in a new area, I can watch out for her as well.
Tuesday, May 15, 2007
Trish is being admitted
Trish is being readmitted today. She was to be on 5A (our favorite section) and now it appears that she will be on 5D (never been there and it is usually a place for solid tumors). They have told us that the cysts which are casuing the problems are the result of an infection and giving her heavy antibiotics. I would feel a lot better if she were on 5A or 5C. I'm really not happy about her being on 'D'. The admission is open ended but they expect it to be one to three days and really it just depends on when she clears up. I think she is on D because they are just out of beds and have folks getting chemo and they need to be on D or C, but I am still not happy....Just lots of not so good news lately. I guess on the good news side - Trish's white count is still tracking up and other counts are holding ok.
Getting hit by a truck in traffic would be far less painful than any cancer diagnosis.
Getting hit by a truck in traffic would be far less painful than any cancer diagnosis.
Monday, May 14, 2007
Monday -- Good Mother's Day, Some Good News and some New Challenges
Trish had a good Mother's Day weekend with Andy and Matt. Trish and Aunt Mary did most of the cooking, but it was a labor of love. Trish made Matt's favorite biscotti and Andy's favorite Decadent French Toast. The French toast recipe comes from a Bed and Breakfast Cookbook I bought for Trish years ago when I still worked for Florida Power and Light, but that book still holds most of our favorite repeat recipes.
While we managed to keep the weekend Dr free -- Trish wasn't feeling so good this morning. They had taken an XRay and CT on Friday and didn't reach any conclusions. Today, they did a CT and UltraSound. Today, the scans were more revealing....They noticed two cysts, which were larger han anything they saw on Friday. They are not sure what to think about this. There are many possibilities. Probably the nicest would be that the cysts were filling with blood and that's why they were getting larger. With the platlets Trish received today, that should stop and they might even go away on their own or at least reduce in size and be harmless. The bottom line is they don't know, so we'll be back tomorrow to visit more doctors, get some specialists consults etc.
I am tired of people telling me I am right. I want someone to tell me I am so dead wrong, missed the big opportunity and can do XXXX. I spoke with a billing insurance specialist today at Hopkins who had told another specialist at Hopkins that we could get Trish on Medicare. After alking to me she said wow - you know your stuff and ou are right....It would be tough even for a sleazy attorney to get Trish on Medicare (primarily because between being diagnosed, put in remission and relapsing, Trish was able to go back to work.....She also confirmed for me that the transplant costs will be about $500,000, so we are already below that in our existing insurance. Thanks to all who have already helped out with the fundraising efforts.
Oh - I promised some good news.... Trish blood counts are up and continue on a slow and steady rise. And Drum roll please... Neutrophils have made an appearance -- 42 to be exact -- not enough to throw a party or go find a biopsy needle, but a nice advance from zero. White cells too are up at a slow and steady but insignificant number of 140. Just to know that the counts are holding and building slowly is a good thing.
I expect to post something late Tuesday afer what promises to be a long day.
While we managed to keep the weekend Dr free -- Trish wasn't feeling so good this morning. They had taken an XRay and CT on Friday and didn't reach any conclusions. Today, they did a CT and UltraSound. Today, the scans were more revealing....They noticed two cysts, which were larger han anything they saw on Friday. They are not sure what to think about this. There are many possibilities. Probably the nicest would be that the cysts were filling with blood and that's why they were getting larger. With the platlets Trish received today, that should stop and they might even go away on their own or at least reduce in size and be harmless. The bottom line is they don't know, so we'll be back tomorrow to visit more doctors, get some specialists consults etc.
I am tired of people telling me I am right. I want someone to tell me I am so dead wrong, missed the big opportunity and can do XXXX. I spoke with a billing insurance specialist today at Hopkins who had told another specialist at Hopkins that we could get Trish on Medicare. After alking to me she said wow - you know your stuff and ou are right....It would be tough even for a sleazy attorney to get Trish on Medicare (primarily because between being diagnosed, put in remission and relapsing, Trish was able to go back to work.....She also confirmed for me that the transplant costs will be about $500,000, so we are already below that in our existing insurance. Thanks to all who have already helped out with the fundraising efforts.
Oh - I promised some good news.... Trish blood counts are up and continue on a slow and steady rise. And Drum roll please... Neutrophils have made an appearance -- 42 to be exact -- not enough to throw a party or go find a biopsy needle, but a nice advance from zero. White cells too are up at a slow and steady but insignificant number of 140. Just to know that the counts are holding and building slowly is a good thing.
I expect to post something late Tuesday afer what promises to be a long day.
Friday, May 11, 2007
Friday Update
Better late than never... Trish's counts are slightly up and holding today. So well that she didn't need any blood products today. The white count has been rising slow and steady. We don't expect to see any neutrophils till the white count goes over 200, so it's still a ways off. Who knows maybe Dr. Griffiths will be back before we are ready for a biopsy. I just hope we get real good results so we can move on to the next step.
The boys come up for Mother's Day tomorrow. Neither of us has seen them in about two months -- since mid-March. Trish has been baking like crazy. Aunt Mary had to borrow a neighbor's Kitchen-Aid blender so Trish could get the job done (at home Trish has two of them -- usually going at the same time). Trish is truly a master baker.
Once again I'd like to thank everyone who has already responded to our fund raising efforts. Big things are in the works -- if you'd like to help contact my Mom or Trish's sister to see how you can get involved.
Here's hoping everyone has a nice Mother's Day weekend! Enjoy the time you have.
The boys come up for Mother's Day tomorrow. Neither of us has seen them in about two months -- since mid-March. Trish has been baking like crazy. Aunt Mary had to borrow a neighbor's Kitchen-Aid blender so Trish could get the job done (at home Trish has two of them -- usually going at the same time). Trish is truly a master baker.
Once again I'd like to thank everyone who has already responded to our fund raising efforts. Big things are in the works -- if you'd like to help contact my Mom or Trish's sister to see how you can get involved.
Here's hoping everyone has a nice Mother's Day weekend! Enjoy the time you have.
Wednesday, May 9, 2007
Wednesday Update
Today was a very long day.....We started the day with a recheck in the Wilmer eye institute. You'll be happy to know that Trish's eyes passed the test. The doctor says they are much better and we should just follow the same steps if it were to reoccur.
We than started the normal IPOP appointment. Trish got platlets today and we ended up getting an x-ray and a CT just to tell us everything was ok. Better safe than sorry I guess. Some good news is that Trish's white counts have increased. They were 120 today. Not anything to get too excited about. Neutrophils are the real hero of the immune system and they are still a bit away from arriving.
Dr. Griffiths met with us today and she said that she'd like to wait longer before the biopsy this time to insure that the insurance will accept the results and she will be in remission.
The boys are coming up this weekend and Trish had me go to the store tonight to get her all of her necessary baking supplies. Aunt Mary called a friend of hers to borrow her kitchen aid mixer so that Trish would have the proper tools. The boys should be in for a real treat this weekend.
I'd like to thank everyone who has responded with gracious donations already to our need for fundraising. For an explanation or to donate click on the "What more can I do" link on the left. If you'd like to help plan or work on fundraising activties, please contact my Mom or Trish's sister.
Tomorrow should be a long day of focusing on work-work, while Trish starts her baking. Her cousin Liz and husband Paul sent her a Rachael Ray cookbook recently and she is making me dinner from this book tomorrow night too.....Should be an enjoyable busy day.
We than started the normal IPOP appointment. Trish got platlets today and we ended up getting an x-ray and a CT just to tell us everything was ok. Better safe than sorry I guess. Some good news is that Trish's white counts have increased. They were 120 today. Not anything to get too excited about. Neutrophils are the real hero of the immune system and they are still a bit away from arriving.
Dr. Griffiths met with us today and she said that she'd like to wait longer before the biopsy this time to insure that the insurance will accept the results and she will be in remission.
The boys are coming up this weekend and Trish had me go to the store tonight to get her all of her necessary baking supplies. Aunt Mary called a friend of hers to borrow her kitchen aid mixer so that Trish would have the proper tools. The boys should be in for a real treat this weekend.
I'd like to thank everyone who has responded with gracious donations already to our need for fundraising. For an explanation or to donate click on the "What more can I do" link on the left. If you'd like to help plan or work on fundraising activties, please contact my Mom or Trish's sister.
Tomorrow should be a long day of focusing on work-work, while Trish starts her baking. Her cousin Liz and husband Paul sent her a Rachael Ray cookbook recently and she is making me dinner from this book tomorrow night too.....Should be an enjoyable busy day.
Monday, May 7, 2007
Monday News - White cells return
We got some good news today. Trish's white cell count is back and we'll start tracking it again on the counts page. It's not very big, but it hit 90 today. They decided to give Trish both platlets and red cells today, however, they only administered the platlets. We have to come back tomorrow for red cells. We may get the day off from IPOP on Wednesday, but we'll have to come back down for the eye appointment Wednesday -- so this could end up being a heavy week of visits.
But - hey - did you hear? Trish white cells are starting to come back. Audra her nurse practitioner thinks she could be on track to get her bone marrow biopsy next week -- that's both good and bad since Dr. Griffiths will be off next week and won't be able to do the procedure. Trish is much more relaxed when Dr. G has that long think needle in her hand.
I had a tough stress point last week. Trish's second round of chemo ate away at the remaining insurance we have, and we only have about $60,000 before we are at the minimum amount needed for the transplant. We have checked into just about everything out there. Trish wouldn't be eligible for medicare till about Feb 2008, and that's only if they classify her as disabled from her original diagnosis date in 2005. We are also looking into guaranteed 1099 employee policies a new lead and have some last gasp strategies if we need them.
Additionally, family and friends have established the Trish DiComo Assistance fund and will begin some fundraising efforts shortly. You can also make a contribution securely on-line. Click on the "What else can I do" link for more information.
But - hey - did you hear? Trish white cells are starting to come back. Audra her nurse practitioner thinks she could be on track to get her bone marrow biopsy next week -- that's both good and bad since Dr. Griffiths will be off next week and won't be able to do the procedure. Trish is much more relaxed when Dr. G has that long think needle in her hand.
I had a tough stress point last week. Trish's second round of chemo ate away at the remaining insurance we have, and we only have about $60,000 before we are at the minimum amount needed for the transplant. We have checked into just about everything out there. Trish wouldn't be eligible for medicare till about Feb 2008, and that's only if they classify her as disabled from her original diagnosis date in 2005. We are also looking into guaranteed 1099 employee policies a new lead and have some last gasp strategies if we need them.
Additionally, family and friends have established the Trish DiComo Assistance fund and will begin some fundraising efforts shortly. You can also make a contribution securely on-line. Click on the "What else can I do" link for more information.
Sunday, May 6, 2007
A great Sunday....
We hope you had a great day today. We did. There were no visits to the hospital. No catching up on work. Just a trip of discovery, relaxation and fun. Yesterday I slept most of the day away, catching up on my needed rest. Trish ran out with Aunt Mary and than Trish and I went to Mass at St. Patrick's in Havre de Grace. It's a quaint, small very old church.
Today Trish and I went on a journey. We started out heading to Gettysburg, PA. The thought was that there would be lots of history to keep us busy, keep our minds off of all things hospital and leukemia related. We made the drive to Gettysburg, toured some battle fields, had lunch at a local diner. Rachael Ray would be proud of Trish -- Trish stepped up and asked the locals for a suggestion and it was a good one.
We then headed to the Adam's county Apple Blossom Festival. Not a big festival or at least by the time we got there....But we did leave with an Apple Pie, a jug of Apple Cider, an Apple Dumpling and a bag of Apples. So I guess it was productive. We than headed back towards Gettysburg and noticed a sign for Emmitsburg.
Friends of ours from IPOP (Joe and Annie) told us about Mount St. Mary's University and the Elizabeth Ann Seton Shrine and Lourdes Grotto. It's a Catholic University in north west Maryland. Since we were so close we decided to go check it out. The college campus is beautiful. The Seton Shrine was closed. In case you don't know, she was the first American cannonized as a Saint. The Lourdes Grotto is a reproduction of the grotto in Lourdes France. It was built in the late 1800's just about 25 years or so after the actual events in Lourdes France. The grounds were beautiful. There were people filling bottles of water from the stream that ran through the grotto. We lit a candle and walked the grounds.
Friends of ours from IPOP (Joe and Annie) told us about Mount St. Mary's University and the Elizabeth Ann Seton Shrine and Lourdes Grotto. It's a Catholic University in north west Maryland. Since we were so close we decided to go check it out. The college campus is beautiful. The Seton Shrine was closed. In case you don't know, she was the first American cannonized as a Saint. The Lourdes Grotto is a reproduction of the grotto in Lourdes France. It was built in the late 1800's just about 25 years or so after the actual events in Lourdes France. The grounds were beautiful. There were people filling bottles of water from the stream that ran through the grotto. We lit a candle and walked the grounds.
Than we took our long drive home to Aunt Mary's. It was a day well spent. Tomorrow we are back to IPOP, work and all the mess that is our lives at the moment. This too shall pass.
Friday, May 4, 2007
Friday - bottle of whites
Her blood counts have not started to come back yet. White count is still less than 50. Not really sure how long it will be befre it starts to come back, but we don't really expect it back until around the 17th -- not sure if that means a start to come back or back by than, we'll just wait and see.
The boys are cominig up next weekend for mothers day. I think they will enjoy spending time with Trish at Aunt Mary's much more than their last visit when she was in the hospital. Stay tuned....hopefully we'll start seeing some white cells next week.
Well, we thought we were going home....The nurse couldn't flush Trish's purple line (she has two lines on her PICC, purple and red). So we had to get an x-ray and probably some strong clot busting meds before we can go home. This nurse says we should be flushing her lines on the off days. When Trish first got the picc we were told that we didn' need to flush it daily like we did the Hickman that she had the first time. So our long day is getting longer. We should be off this weekend though, not back till Monday. The graphic at the top of this post is from Julie Meryl's cafe press store http://www.juliemeryl.com , she has some cool designs for Leukemics.
Wednesday, May 2, 2007
Wednesday's Update
Today was an easy hospital day. Trish didn't need any blood products, but she's still traveling with no white cells on board. Hopefully we'll see their return on Friday or Monday's visit. Trish is actually feeling pretty good today. The usual headache, but nothing else. Her eyes are much better.
My biggest concern right now is insurance. We have dropped down just over $100,000 in the last few days. Only about $65,000 left till we hit the minimum required for the transplant. Family back home is preparing to fund raise, we thought we would be safe when we came up here, about $100,000 for the first round of chemo and about $400,000 for the transplant and that would leave us with over a $100,000 for post care. Well you know what they say about the best laid plans. An extra round of chemo didn't help. I will find it a lot easier to accept something bad, knowing that we did all we could to help Trish. I don't think I could handle having her die for lack of funds -- that's just not right.
My biggest concern right now is insurance. We have dropped down just over $100,000 in the last few days. Only about $65,000 left till we hit the minimum required for the transplant. Family back home is preparing to fund raise, we thought we would be safe when we came up here, about $100,000 for the first round of chemo and about $400,000 for the transplant and that would leave us with over a $100,000 for post care. Well you know what they say about the best laid plans. An extra round of chemo didn't help. I will find it a lot easier to accept something bad, knowing that we did all we could to help Trish. I don't think I could handle having her die for lack of funds -- that's just not right.
Tuesday, May 1, 2007
Day 12, "I can see clearly again"
Today was a good day...By Noon, Trish was able to open her eyes again, wow what a difference that makes. This afternoon we went to Perryville to get Trish some new sun glasses. Tomorrow is a doctor day again. Sorry to have made you wait so long for this, Trish's CT from yesterday (Monday) was negative, so the fall damaged more ego than body. Today , Trish has a nice black and blue right eye, shoulder and still has a band-aid above the eye, but other than a headache she is feeling fine. It was great to get her back today. The last few days have been pretty rough, I am hoping the next few weeks will be much smoother sailing. We found out our favorite Dr. Griffiths will be on vacation when Trish is due for her bone marrow biopsy. That's a bummer, but in the grand scheme of things not a big deal. It will be interesting to see where her white count is on Wednesday, it was less than 50 yesterday. Stay tuned.
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