Dr. Meade dropped by late this afternoon to give us an update on the liver biopsy. No surprises good or bad. They confirmed she had GvH in the liver (we knew that), they also said she had a high amount of iron in the liver -- that too is pretty normal for someone receiving transfusions. After Trish's first round of chemo, Drs. Fu and Griffiths considered putting her on a chelation agent to get rid of the extra iron, but her body started getting rid of it fast enough. This time she will likely need it, but not till he dust settles.
She had a nausea filled day, tried to eat, but didn't keep much down. She is really getting bummed. She justs wants to get home. She should eat better if she gets out, but they won't let her out till she eats well. It's a Catch 22. She is starting to worry. It's way too early too worry yet. Pray, call, write.
Thank you.
Friday, August 31, 2007
Sorry to post so late...
but I had Internet access issues today. As expected Trish will remain an inpatient and I think it may be a few days before she will be let out. Our girl is down to 84 pounds -- an all time low. The only consolation in this is that she looked a lot worse in the January/February of 2006 when her weight dropped to 87 pounds.
I'll send an email alert out when she gets released. In the meantime, enjoy your weekend and pray for an appetite.
I'll send an email alert out when she gets released. In the meantime, enjoy your weekend and pray for an appetite.
Just a quick update
Not a lot to report yet today. We do expect Trish to stay in the hospital today and most likely get out tomorrow, but all is still up in the air and rounds hasn't made it around yet. If you haven't read last night's update yet - there is more info there see below....Here's a positive article I just received in my inbox from the NMDP:
Improved transplant outcome in young adults with AML
The overall survival of de novo acute myeloid leukemia (AML) patients in first complete remission undergoing allogeneic bone marrow transplantation has almost doubled in the past two decades, according to results of a study published in Bone Marrow Transplantation. The study examined outcomes of 170 patients with a median age of 29 years (range 1-47) who underwent an allogeneic bone marrow transplantation, 80 patients before 1990 and 90 patients after 1990. At a median follow-up of 13 years, transplant-related mortality was 30% before and 7% after 1990 (p<0.001), and actuarial 10-year survival was 42% before and 79% after 1990 (p<0.00001). (More)
Improved transplant outcome in young adults with AML
The overall survival of de novo acute myeloid leukemia (AML) patients in first complete remission undergoing allogeneic bone marrow transplantation has almost doubled in the past two decades, according to results of a study published in Bone Marrow Transplantation. The study examined outcomes of 170 patients with a median age of 29 years (range 1-47) who underwent an allogeneic bone marrow transplantation, 80 patients before 1990 and 90 patients after 1990. At a median follow-up of 13 years, transplant-related mortality was 30% before and 7% after 1990 (p<0.001), and actuarial 10-year survival was 42% before and 79% after 1990 (p<0.00001). (More)
Thursday, August 30, 2007
Thursday night update
Well, today didn't end quite as well as we had hoped -- don't panic, no real setback either -- Trish was eating and we did walk. In fact, Dr. Meade caught Trish walking and stopped in the room later in the day to cheer her on and congratulate her. However, lunch and dinner, made encore appearances after going down well. She was nauseous most of the day, we are both betting against her release tomorrow and think she is in for another day or so.
I also noticed that she is on precautions for the chemo regimen through September 2 -- which in my mind would mean that they wouldn't release her till than -- but you never know. The protocol that she is on for this treatment can be done as an outpatient, so maybe that's not an issue. Bottom line is Trish needs to be a little stronger and a little more nausea free before she gets out.
Trish was funny, despite the interruptions in the hospital, she says that she sleeps better in the hospital than at the Hackerman-Patz house (halfway house as one of her co-workers calls it). The house is noisy in the middle of the night: the people upstairs from us seem to wake up in the middle of the night and pace across the creaky floor or decide they want to rearrange furniture almost every night; the dumpsters located underneath our windows appear to be emptied every night at 2:15a.m. without fail; the room unit air conditioner is much louder the the HEPA filter in the hospital room (and of course it is too cold for Trish and too hot for me).
Speaking of noises. I have a new project, I am recording sounds from around the hospital to give you an audio essay of our experience (kind of ala NPR, but without the high brow commentary). Ok, I know, it's silly and I have enough else to do between work and Trish, but I thought it would be a fun diversion until I can fix my Sling box and watch TV to relax -- oh yeah that's another in-patient advantage Trish has - when she's in the hospital she has cable TV, at Hackerman we have rabbit ears and no channel comes in clear. And yet all of this is the silly stuff.
I hope that all of you have some real good plans for the holiday weekend. We'll be here. If you get bored give us a call. Check the website for where exactly we are. Have a great Labor Day weekend.
I also noticed that she is on precautions for the chemo regimen through September 2 -- which in my mind would mean that they wouldn't release her till than -- but you never know. The protocol that she is on for this treatment can be done as an outpatient, so maybe that's not an issue. Bottom line is Trish needs to be a little stronger and a little more nausea free before she gets out.
Trish was funny, despite the interruptions in the hospital, she says that she sleeps better in the hospital than at the Hackerman-Patz house (halfway house as one of her co-workers calls it). The house is noisy in the middle of the night: the people upstairs from us seem to wake up in the middle of the night and pace across the creaky floor or decide they want to rearrange furniture almost every night; the dumpsters located underneath our windows appear to be emptied every night at 2:15a.m. without fail; the room unit air conditioner is much louder the the HEPA filter in the hospital room (and of course it is too cold for Trish and too hot for me).
Speaking of noises. I have a new project, I am recording sounds from around the hospital to give you an audio essay of our experience (kind of ala NPR, but without the high brow commentary). Ok, I know, it's silly and I have enough else to do between work and Trish, but I thought it would be a fun diversion until I can fix my Sling box and watch TV to relax -- oh yeah that's another in-patient advantage Trish has - when she's in the hospital she has cable TV, at Hackerman we have rabbit ears and no channel comes in clear. And yet all of this is the silly stuff.
I hope that all of you have some real good plans for the holiday weekend. We'll be here. If you get bored give us a call. Check the website for where exactly we are. Have a great Labor Day weekend.
Some good news
OK, Dr. Meade in rounds today told Trish that she could be discharged as early as tomorrow. (Of course it could be as late as the weekend). His orders to Trish were EAT and WALK!
If she is eating and walking, they will let her out. She has some pain today from the biopsy. It was transjugular, meaning they inserted through her neck, threaded down the jugular vein down to her liver. The sedation didn't work so well and the pressure they applied aferwards to insure she wouldn't bleed really hurt.
Last night she received her second and last dose of cytoxan (for this treatment anyway) and she slept well mos of the morning. This afternoon I will force her to walk a lot and go back and do laundry and sanitze the apartment. It will be a busy day.
Keep up the good work at providing her with encouragement and good cheer this will be very important in the next few weeks.
If she is eating and walking, they will let her out. She has some pain today from the biopsy. It was transjugular, meaning they inserted through her neck, threaded down the jugular vein down to her liver. The sedation didn't work so well and the pressure they applied aferwards to insure she wouldn't bleed really hurt.
Last night she received her second and last dose of cytoxan (for this treatment anyway) and she slept well mos of the morning. This afternoon I will force her to walk a lot and go back and do laundry and sanitze the apartment. It will be a busy day.
Keep up the good work at providing her with encouragement and good cheer this will be very important in the next few weeks.
Wednesday, August 29, 2007
Okey Dokey it's been a long day
The Liver biopsy was finally done tonight. Trish was wheeled back into the room at about 8:30p.m. The pre-meds for chemo soon have started (around 9:15pm). She's feeling pretty good considering. She had one of her fentanyl lollipops for pain and will get sedating meds pretty soon. Than he chemo will start. I will start a new chart of blood counts and we will start a new waiting game. As soon as Hopkins gets around to billing, we expect to run out of benefits shortly and will look towards a guaranteed issue policy under HIPPA for some coverage. The policy will run about $1,000 a month and provide much less coverage than we have been used to, but at least we should be able to maintain coverage so that HIPPA protections should remain in place on her. Many of you made that possible and we can't express our thankfulness enough. We're not opimistic of getting results of today's biopsy before Tuesday or Wednesday of next week. Trish will probably be sleepy till about noon tomorrow (Thursday), so if you wan to call her don't do it too early.
OK It's 6pm....
They must be really backed up in radiology today...Trish is still waiting for a ride downstairs for her biopsy. Later tonigh she'll get her second round of chemo (Cytoxan). She was sleeping most of the day, but now she's wide awake and hungry and can't eat or anything else as she waits for her procedure.
In rounds today (Wednesday) the doctors said it may take two weeks before she sees an improvement. I think that they were just setting expectations for her, so that she isn't upset if things don't change faster. She did look better today to me.
Katie, her nurse, just came in to get her ready to go. So she should be going down soon for the procedure -- finally! I'll make a quick post when it's all done. Stay tuned.
In rounds today (Wednesday) the doctors said it may take two weeks before she sees an improvement. I think that they were just setting expectations for her, so that she isn't upset if things don't change faster. She did look better today to me.
Katie, her nurse, just came in to get her ready to go. So she should be going down soon for the procedure -- finally! I'll make a quick post when it's all done. Stay tuned.
Another brief update
Still haven;t gone to biopsy yet. Her nurse tells us that it now looks like they will take her down between 4 and 6pm for the biopsy. Good thing Trish is sleepy and doesn't realize she hasn't eaten all day.
Nothing new to report....I'll likely post again near the end of the day. I don't expect her to be awake enough to talk to anyone today. So my apologies if you took my cheerleading request to heart and worked up the nerve to call her today only to get no answer. Tomorrow is another day and she'll still need the cheerleading.
Nothing new to report....I'll likely post again near the end of the day. I don't expect her to be awake enough to talk to anyone today. So my apologies if you took my cheerleading request to heart and worked up the nerve to call her today only to get no answer. Tomorrow is another day and she'll still need the cheerleading.
Quick Update
Trish is sleepy, lots of meds overnight. Her skin looks better to me. No blood draw post cytoxan to see if the counts responded yet. Waiting for liver biopsy, hasn't happened yet. I unplugged her phone so she could sleep this am.
More later.
More later.
Tuesday, August 28, 2007
Tuesday Update after Dr. Meade stopped in
Trish will start receiving her Cytoxan tonight. They will start pre-hydration probably within the hour, than infuse cytoxan over two hours and than another few hours of hydration.
She'll be NPO (no food/drink) after midnight and than get a liver biopsy tomorrow morning, not sure what time yet. The best news is that her GvH appears to be in the skin and liver only. Gut (intestinal) GvH is a much harder foe.
She will get two days of cytoxan and than wait for her blood counts to recover. She should get almost immediate relief from the GvH symptoms (within a few days), but her blood counts will take a about 28 days to come back. They came back after transplant faster than that and they were predicted to take 28 days than too, so her counts may recover quicker.
There is a risk wih the cytoxan therapy of increasing her chance to get Leukemia again, but it is a small chance and at the moment she is Leukemia free.
On the positive side, Trish only weighs 86 pounds (did I say positive?), at the end of her very first chemo rounds, Trish weighed 87 pounds and looked like a starved child from Ethiopia in an ad for the Christian Children's fund. She weighs a pound less and looks fine. Dr. G visited today and said she looked great and she really does. Ok some remnants of peeling skin, no hair and yeah you can see her bones, but she looks good.
We just all need to work very hard over the next several days to keep her spirits up. Thanks to those of you who have already made the effort, you will never know the huge significance of what seems like a small call or email -- it is far more powerful than you can imagine.
She'll be NPO (no food/drink) after midnight and than get a liver biopsy tomorrow morning, not sure what time yet. The best news is that her GvH appears to be in the skin and liver only. Gut (intestinal) GvH is a much harder foe.
She will get two days of cytoxan and than wait for her blood counts to recover. She should get almost immediate relief from the GvH symptoms (within a few days), but her blood counts will take a about 28 days to come back. They came back after transplant faster than that and they were predicted to take 28 days than too, so her counts may recover quicker.
There is a risk wih the cytoxan therapy of increasing her chance to get Leukemia again, but it is a small chance and at the moment she is Leukemia free.
On the positive side, Trish only weighs 86 pounds (did I say positive?), at the end of her very first chemo rounds, Trish weighed 87 pounds and looked like a starved child from Ethiopia in an ad for the Christian Children's fund. She weighs a pound less and looks fine. Dr. G visited today and said she looked great and she really does. Ok some remnants of peeling skin, no hair and yeah you can see her bones, but she looks good.
We just all need to work very hard over the next several days to keep her spirits up. Thanks to those of you who have already made the effort, you will never know the huge significance of what seems like a small call or email -- it is far more powerful than you can imagine.
Billi is not our hero
Well, Trish's Billirubin count went higher again today. The docs just left rounds and Dr. Meade is coming back late this afternoon to go over the next step in more detail. The next step involves Cytoxan chemo therapy.
You can read an abstract of a similar study done in the Czech Republic by clicking this sentence. The outcomes in that study, while a small test group, were very good. It works best on GvH in the skin and liver, which is where Trish's GvH is.
The actual clinical trial that Trish will be getting can be read by clicking here.
Today, they will send Trish for CT scans to insure she doesn't have an infection. She is sweating and cold, but has no fever. The steroids can mask a fever, previous scans have not shown anything and the hope is that today's will not either. Trish will also get a liver biopsy to insure there is nothing else going on. I don't think that is a fun procedure. The ultra-sound of her liver yesterday looked good according to Dr. Meade.
This is the big bend folks. Trish needs you. She needs your prayers and just as important she needs your good cheer. It's time to step up the cheerleading folks -- I need your help pump our girl up! Cards, letters, calls and email -- they are all good and much needed to keep Trish on track and focused on the prize.
Chemo will likely start tomorrow.
You can read an abstract of a similar study done in the Czech Republic by clicking this sentence. The outcomes in that study, while a small test group, were very good. It works best on GvH in the skin and liver, which is where Trish's GvH is.
The actual clinical trial that Trish will be getting can be read by clicking here.
Today, they will send Trish for CT scans to insure she doesn't have an infection. She is sweating and cold, but has no fever. The steroids can mask a fever, previous scans have not shown anything and the hope is that today's will not either. Trish will also get a liver biopsy to insure there is nothing else going on. I don't think that is a fun procedure. The ultra-sound of her liver yesterday looked good according to Dr. Meade.
This is the big bend folks. Trish needs you. She needs your prayers and just as important she needs your good cheer. It's time to step up the cheerleading folks -- I need your help pump our girl up! Cards, letters, calls and email -- they are all good and much needed to keep Trish on track and focused on the prize.
Chemo will likely start tomorrow.
Monday, August 27, 2007
Monday Update
Trish's billirubin went up again today, but other liver function signs (enzymes) showed improvement. I think Trish got a little bummed because she could actually see her yellow eyes and skin today. Dr. G came by and gave her a pep talk and she perked up after that. Sometime tonight they will do an ultrasound of her liver and than tomorrow morning will be the decision day.
The decision? What to do next -- the options that we know about would be to continue to wait and let the steroids and FK506 work some more or start a chemo regimen of cytoxan at a dosage equal to the post transplant dose (which was about half the dose of the pre-transplant dose), both of which are more than the CloSi dose of cytoxan.
She still has a way to go to complete all of her skin peeling and Vicki the CNP for GvH says she may be in for one more layer of skin peeling - yuck. In the meantime she is cold and sweating, she doesn't have a fever, but the steroids could be blocking the fever.
Look for an update tomorrow around Noonish for the game plan.
The decision? What to do next -- the options that we know about would be to continue to wait and let the steroids and FK506 work some more or start a chemo regimen of cytoxan at a dosage equal to the post transplant dose (which was about half the dose of the pre-transplant dose), both of which are more than the CloSi dose of cytoxan.
She still has a way to go to complete all of her skin peeling and Vicki the CNP for GvH says she may be in for one more layer of skin peeling - yuck. In the meantime she is cold and sweating, she doesn't have a fever, but the steroids could be blocking the fever.
Look for an update tomorrow around Noonish for the game plan.
Sunday, August 26, 2007
Sunday - Day 46
Trish's is feeling sleepy, the steroids haven't had the anxious "energy" effect that they are known for with her, nor have they increased her appetite which would have been a welcome side effect.
Her skin is peeling like crazy and the new skin looks pretty good. Her skin had become so "sun burned" she looked like she had African-American legs on a white body yesterday. Her billirubin count is still elevated and her eyes are yellow. I have never seen yellow eyes before. I have always heard about it and never seen it. In fact, according to Trish's nurses she has had yellow eyes for over a day before I noticed it and went to tell them. She likes to keep her room dark and in her room I couldn't see it,, but when we walked, it was obvious in the bright hallway lights.
The plan currently is to wait 48 hours, till Tuesday. The levels of prograf (FK506, Tacrolimus) in her blood have reached its therpeutic level in the last 24 hours. By Tuesday, we should know if the steroids and prograf will control her GvH. While the skin is improving we haven't seen a major improvement in the billirubin count (her liver function). So the thought is at this point that the GvH is in her skin (which is getting better) and in her liver. The first three places that GvH is seen are usually in the skin, liver and gut (digestive tract). The good news is that she has no signs of GvH in her gut. I found out yesterday that there are four levels of GvH and Trish was diagnosed with level 2. Level 3 and 4 are pretty severe. Level 1 and 2 are still very treatable.
On Tuesday, they will decide if things are getting better or if we need to start a chemo regimen of cytoxan. If they do start cytoxan, it will be at the same dose she received post transplant (which is about half the dose of the pre-transplant series). She could be an inpatient for a while.
Again, folks, she could use some perking up...send her a card, write an email or pick up the darn phone and call her. The best address for mailing is the Hackerman House address listed below in a recent post. The phone number and email addresses are listed in the left column. Thanks as always for your continued prayers and support.
Her skin is peeling like crazy and the new skin looks pretty good. Her skin had become so "sun burned" she looked like she had African-American legs on a white body yesterday. Her billirubin count is still elevated and her eyes are yellow. I have never seen yellow eyes before. I have always heard about it and never seen it. In fact, according to Trish's nurses she has had yellow eyes for over a day before I noticed it and went to tell them. She likes to keep her room dark and in her room I couldn't see it,, but when we walked, it was obvious in the bright hallway lights.
The plan currently is to wait 48 hours, till Tuesday. The levels of prograf (FK506, Tacrolimus) in her blood have reached its therpeutic level in the last 24 hours. By Tuesday, we should know if the steroids and prograf will control her GvH. While the skin is improving we haven't seen a major improvement in the billirubin count (her liver function). So the thought is at this point that the GvH is in her skin (which is getting better) and in her liver. The first three places that GvH is seen are usually in the skin, liver and gut (digestive tract). The good news is that she has no signs of GvH in her gut. I found out yesterday that there are four levels of GvH and Trish was diagnosed with level 2. Level 3 and 4 are pretty severe. Level 1 and 2 are still very treatable.
On Tuesday, they will decide if things are getting better or if we need to start a chemo regimen of cytoxan. If they do start cytoxan, it will be at the same dose she received post transplant (which is about half the dose of the pre-transplant series). She could be an inpatient for a while.
Again, folks, she could use some perking up...send her a card, write an email or pick up the darn phone and call her. The best address for mailing is the Hackerman House address listed below in a recent post. The phone number and email addresses are listed in the left column. Thanks as always for your continued prayers and support.
Saturday, August 25, 2007
Doing well and staying longer...
Trish continues to do well. She's a little tired today, she thinks that her nurse last night was extra generous with the sedation. It's all good though, because Trish really needed the sleep.
The plan is to keep her in till at least Tuesday. If they do not see the improvement they want from the steroids they will start a Cytoxan chemo treatment on Tuesday or Wednesday -- which will mean she would likely stay in longer.
As expected, the post transplant stuff is worse than the transplant. We really started getting optimistic, she was doing so well post transplant.
This is the scary stuff now. Today's nurse said not to get our hopes up for avoiding the cytoxan chemo. Either way, we are not looking ahead too far. We know to take it one day at a time. We know that with your prayers and support, we can make it through this.
The biggest thing now is keeping Trish in good spirits. If you get a chance to call her, please do -- I moved the hospital room phone number to the left column so it is easier to find. If you are not up to calling her, send her an email. Here's the best mailing address for now...it is the Hackerman house cause even if she gets out on Tuesday, we will be there for at least another week.... Trish DiComo; Hackerman-Patz House; 1909 McElderry Street; Room 6; Baltimore, MD 21205 Sending cards here will insure she gets them quicker than at her Aunt's house this next week or two.
The plan is to keep her in till at least Tuesday. If they do not see the improvement they want from the steroids they will start a Cytoxan chemo treatment on Tuesday or Wednesday -- which will mean she would likely stay in longer.
As expected, the post transplant stuff is worse than the transplant. We really started getting optimistic, she was doing so well post transplant.
This is the scary stuff now. Today's nurse said not to get our hopes up for avoiding the cytoxan chemo. Either way, we are not looking ahead too far. We know to take it one day at a time. We know that with your prayers and support, we can make it through this.
The biggest thing now is keeping Trish in good spirits. If you get a chance to call her, please do -- I moved the hospital room phone number to the left column so it is easier to find. If you are not up to calling her, send her an email. Here's the best mailing address for now...it is the Hackerman house cause even if she gets out on Tuesday, we will be there for at least another week.... Trish DiComo; Hackerman-Patz House; 1909 McElderry Street; Room 6; Baltimore, MD 21205 Sending cards here will insure she gets them quicker than at her Aunt's house this next week or two.
Friday, August 24, 2007
Friday and the peeling is easy
Trish's GvH skin is peeling off in large patches today. Dr. Meade says that's a good thing. He also says her liver function indicators are improving, so all indications are moving in the right direction. However, she hasn't improved enough for him to discharge her yet.
He had hopes that he would feel comfortable discharging her today, but has decided to probably keep her in over the weekend. I still haven't found her phone charger, so to reach her please use the room number a few posts down.
For the first time since the transplant, Trish will get a transfusion today. Two units of red blood. Her crit dipped low a day or two ago and they have been holding off on transfusing. That at least explains her tired-ness the last few days. I am keeping the post transplant counts updated (see the link to the left), but once the white and neutrophils get up there you can no longer see the platelet and red cell (hematacrit count). Her platelets are fine. Her white and neutrophils are above normal. This is do to the GvH and the steroids treating t he GvH. Despite the fact that her counts are high, she is still prone to infection while being on the steroids. The steroids and prograf (FK506) suppress her new immune system to stop the GvH effect.
Trish's cousin Rick is in town and he and Aunt Mary and cousin John will be by this afternoon. I am looking forward to getting a look at Rick's iPhone -- he actually waited a week or two after the rush to get his. Korrina, Trish's nurse today, is also looking forward to seeing his iPhone.
Trish is resting a lot today, frustrated that she's so tired, still itchy and a little bit nauseous -- though she has been eating and keeping her food down. Speaking of eating -- I need to grab some lunch.
He had hopes that he would feel comfortable discharging her today, but has decided to probably keep her in over the weekend. I still haven't found her phone charger, so to reach her please use the room number a few posts down.
For the first time since the transplant, Trish will get a transfusion today. Two units of red blood. Her crit dipped low a day or two ago and they have been holding off on transfusing. That at least explains her tired-ness the last few days. I am keeping the post transplant counts updated (see the link to the left), but once the white and neutrophils get up there you can no longer see the platelet and red cell (hematacrit count). Her platelets are fine. Her white and neutrophils are above normal. This is do to the GvH and the steroids treating t he GvH. Despite the fact that her counts are high, she is still prone to infection while being on the steroids. The steroids and prograf (FK506) suppress her new immune system to stop the GvH effect.
Trish's cousin Rick is in town and he and Aunt Mary and cousin John will be by this afternoon. I am looking forward to getting a look at Rick's iPhone -- he actually waited a week or two after the rush to get his. Korrina, Trish's nurse today, is also looking forward to seeing his iPhone.
Trish is resting a lot today, frustrated that she's so tired, still itchy and a little bit nauseous -- though she has been eating and keeping her food down. Speaking of eating -- I need to grab some lunch.
Thursday, August 23, 2007
Thursday Update
Just a quick post from the hospital today. I slept in and came over without my laptop today to spend some quality time with Trish this morning. I'm headed back this afternoon to wash clothes and beat up one of my vendors who tried to pull a fast one on me earlier this week.
But Trish is looking and feeling better than she was earlier this week. Her skin is starting to lighten up, it is also peeling. She can stand without someone pulling her up. All in all it is obvious the steroids are helping her. She will stay in the hospital tonight again and hopefully get out tomorrow, but it may be Saturday before they let her out. Look through the posts of this week to find her room phone number if you want to call her, her cell phone is out of battery and I need to find the charger back in the apartment.
An update on Andy for those wondering...he is doing good. He saw the doctor last Friday and his arm is getting stronger and the range of motion is what is to be expected or a little better. He is driving his brother and himself to school this week and being very cautious. We are still optimistic we may get home before the end of September, but realistically it is a long shot and we are still taking each day one at a time.
But Trish is looking and feeling better than she was earlier this week. Her skin is starting to lighten up, it is also peeling. She can stand without someone pulling her up. All in all it is obvious the steroids are helping her. She will stay in the hospital tonight again and hopefully get out tomorrow, but it may be Saturday before they let her out. Look through the posts of this week to find her room phone number if you want to call her, her cell phone is out of battery and I need to find the charger back in the apartment.
An update on Andy for those wondering...he is doing good. He saw the doctor last Friday and his arm is getting stronger and the range of motion is what is to be expected or a little better. He is driving his brother and himself to school this week and being very cautious. We are still optimistic we may get home before the end of September, but realistically it is a long shot and we are still taking each day one at a time.
Wednesday, August 22, 2007
Sorry to keep you waiting...
Here's the latest...it's been a long 24 hours. We did get a call back to admit Trish last night. We checked in about 7pm and they started high dose steroids last night just after midnight. She got a second dose this morning around 11am. Trish has already improved since yesterday as a result.
Dr. Boleanos-Meade came in this morning to discuss the clinical trial again with us. Trish has always been happy to participate in the clinical trials. This one had only one scary thing about it. One of the four possible drugs Trish might get with the steroids might cause blindness. While this had been our focus of concern. Dr. Meade blew it for himself when he said that if Trish did well on the regular treatment, she might get to go home as early as 3-4 weeks from today and if she did the trial she would be required to be here at least 56 more days. Trish didn't need to think about it. She didn't care about side effects. She immediately said the standard protocol sounded fine to her. We still may be here through the end of October, but there is now an outside chance we may come home before September is over. Well, it's still a long way away, as each new day brings its own challenges and changes, but it is something to hope for.
We are waiting to confirm our insurance status and hope that we have the running room we need to take care of that.
Trish will likely remain an inpatient tonight and maybe tomorrow night. But should go back to IPOP after that through the remainder of our stay.
I haven't said this in a while, but thanks. Thanks to each and everyone of you who have been praying and helping us along this journey whether you have prayed quietly, watching from the shadows or sent regular email and cards. This journey could not have been traveled without you.
For those who might want to call Trish here is the new room number good at least through tomorrow night. The number is 410-502-0321, best time to call is 1pm through 9pm. She will likely be sleepy if you tried at 11am, right after the steroid dose.
We just came back from about 10 laps around the nurses station so that's a very good thing.
Dr. Boleanos-Meade came in this morning to discuss the clinical trial again with us. Trish has always been happy to participate in the clinical trials. This one had only one scary thing about it. One of the four possible drugs Trish might get with the steroids might cause blindness. While this had been our focus of concern. Dr. Meade blew it for himself when he said that if Trish did well on the regular treatment, she might get to go home as early as 3-4 weeks from today and if she did the trial she would be required to be here at least 56 more days. Trish didn't need to think about it. She didn't care about side effects. She immediately said the standard protocol sounded fine to her. We still may be here through the end of October, but there is now an outside chance we may come home before September is over. Well, it's still a long way away, as each new day brings its own challenges and changes, but it is something to hope for.
We are waiting to confirm our insurance status and hope that we have the running room we need to take care of that.
Trish will likely remain an inpatient tonight and maybe tomorrow night. But should go back to IPOP after that through the remainder of our stay.
I haven't said this in a while, but thanks. Thanks to each and everyone of you who have been praying and helping us along this journey whether you have prayed quietly, watching from the shadows or sent regular email and cards. This journey could not have been traveled without you.
For those who might want to call Trish here is the new room number good at least through tomorrow night. The number is 410-502-0321, best time to call is 1pm through 9pm. She will likely be sleepy if you tried at 11am, right after the steroid dose.
We just came back from about 10 laps around the nurses station so that's a very good thing.
Tuesday, August 21, 2007
Tuesday - no IPOP - no results yet
Today is a day off from IPOP and that's probably a good thing since Trish hasn't really gotten out of bed today. She is in excruciating pain everytime she moves. I keep taking her temperature as often as she will let me hoping that it will be hot enough to call in to the doctors and maybe bring her in. She flirts just under the fever threshold that requires us to call in.
She is eating and drinking though. I think the medrol pack steroids just pissed off her body. We haven't heard back from the graft vs host disease team yet today. I did email Dr. G and she emailed me back saying that the biopsy was not yet read, but it was in as a rush and should be read late today or early tomorrow. She also made some suggestions for the pain.
Last night we went to the dinner that the nurses from 5A did for all of us staying in the hospital housing. It was a great dinner and it felt like a family holiday, we know all the 5A nurses so well it was like being with family. During the dinner, I told them it is weird to be hoping for a positive biopsy. Positive meaning that Trish has GvH, but that is what we find ourselves doing. She needs to be treated but they won't treat her till they know for sure.
To add some fun to our night. Trish fell when she was getting up to use the bathroom. She was just a little off track and fell over a storage bin we keep our stuff in. She didn't hit anything, but she did scrape up her legs and arms pretty well. When I picked her up, she started to pass out. I have to say - even in the middle of the night -- my reflexes in this situation have gotten much better. I was able to lay her out flat on the floor so fast that her body normalized quickly and she never lost consciousness. Who knew stopping a fainting spell could be an art form. The first time this happened, I tried to hold her up and she completely fainted. This time as soon as I felt her starting to go limp, I laid her gently on the floor -- this is a first aid tip folks....in case you ever encounter a fainting person. The faster you get them prone on the floor the better.
Looks like nothing will happen till morning, unless her temp goes above 38 centigrade. Stay tuned. Hopefully some treatment news tomorrow.
She is eating and drinking though. I think the medrol pack steroids just pissed off her body. We haven't heard back from the graft vs host disease team yet today. I did email Dr. G and she emailed me back saying that the biopsy was not yet read, but it was in as a rush and should be read late today or early tomorrow. She also made some suggestions for the pain.
Last night we went to the dinner that the nurses from 5A did for all of us staying in the hospital housing. It was a great dinner and it felt like a family holiday, we know all the 5A nurses so well it was like being with family. During the dinner, I told them it is weird to be hoping for a positive biopsy. Positive meaning that Trish has GvH, but that is what we find ourselves doing. She needs to be treated but they won't treat her till they know for sure.
To add some fun to our night. Trish fell when she was getting up to use the bathroom. She was just a little off track and fell over a storage bin we keep our stuff in. She didn't hit anything, but she did scrape up her legs and arms pretty well. When I picked her up, she started to pass out. I have to say - even in the middle of the night -- my reflexes in this situation have gotten much better. I was able to lay her out flat on the floor so fast that her body normalized quickly and she never lost consciousness. Who knew stopping a fainting spell could be an art form. The first time this happened, I tried to hold her up and she completely fainted. This time as soon as I felt her starting to go limp, I laid her gently on the floor -- this is a first aid tip folks....in case you ever encounter a fainting person. The faster you get them prone on the floor the better.
Looks like nothing will happen till morning, unless her temp goes above 38 centigrade. Stay tuned. Hopefully some treatment news tomorrow.
Monday, August 20, 2007
Ok so we finally got to see GvH team...
and nothing new...They took another biopsy, as expected. That's Trish's 3rd and Dr. Boleanos-Meade - The GvH doc - says she'll never need a face lift or tummy tuck by the time they are done with all their skin biopsies. (That's just bad doc humor, the skin biopsies come from the arm or leg.)
The one bright spot was that Dr. Meade said if the biopsy is still negative for GvH the will formulate a treatment fo Trish that is more than a Medrol pack and less than GvH treatment. Because whaever it is - it isn't going away and it hurts like hell. Imagine the worse sun burn you have ever gotten and if you have gotten the kind of sunburn where wearing any clothes or making any movement sends excruciating pain through your whole body, multiply that by 100 and that's what Trish has. If you have had any less of a sunburn, multiply it by a few 1000 and you might come close. What makes this even worse is that it is all over - even in the places the sun can't reach. (Collective ouch).
We hope to get a call tomorrow from the GvH team askingus to come in and begin treatment. The GvH NP (nurse practitioner) told us today that once they begin treatment relief is quick -- they just won't start treatment until they are sure. Trish has been enduring varying degrees of this pain for over a week now and I am tired and helpless. It has been very frustrating. Tomorrow is a new day and hopefully it will bring a treatment.
The one bright spot was that Dr. Meade said if the biopsy is still negative for GvH the will formulate a treatment fo Trish that is more than a Medrol pack and less than GvH treatment. Because whaever it is - it isn't going away and it hurts like hell. Imagine the worse sun burn you have ever gotten and if you have gotten the kind of sunburn where wearing any clothes or making any movement sends excruciating pain through your whole body, multiply that by 100 and that's what Trish has. If you have had any less of a sunburn, multiply it by a few 1000 and you might come close. What makes this even worse is that it is all over - even in the places the sun can't reach. (Collective ouch).
We hope to get a call tomorrow from the GvH team askingus to come in and begin treatment. The GvH NP (nurse practitioner) told us today that once they begin treatment relief is quick -- they just won't start treatment until they are sure. Trish has been enduring varying degrees of this pain for over a week now and I am tired and helpless. It has been very frustrating. Tomorrow is a new day and hopefully it will bring a treatment.
Monday slow moving
and I can't relax. Trish on the other hand is sleeping. Dr. Griffiths just left, we were so happy to see her. I think the psychological medicine of just seeing her is very good for us. Trish is in pain, just rolling over in the bed hurts her. Yet, last night she sat through (and ate) dinner out with my friend Scott. I wish I could relax. By this afternoon I might, once we have a plan again. The steroid treatment for GvH is about 12 weeks and if we start them this week, that would put us here through November -- so much for our plan of being home in October. I haven't explained that to Trish yet.
Dr. Griffiths reminded us that GvH is something we want to insure that the disease is fought and that acute GvH is usually treated and goes away. Chronic GvH is the stuff that comes and stays forever. So we are still on track from their stand point.
More after we see the GvH team.
Dr. Griffiths reminded us that GvH is something we want to insure that the disease is fought and that acute GvH is usually treated and goes away. Chronic GvH is the stuff that comes and stays forever. So we are still on track from their stand point.
More after we see the GvH team.
Sunday, August 19, 2007
Sunday Update
So we went into IPOP.....and as we expected nothing major.... Dr. Swinnen thinks we will need to biopsy again tomorrow. Trish's liver level is elevated, but only slightly. Her whites cells are again zooming up -- they are at 15650 today. She's tired. I have to believe something is up, but apparently not enough to take any action - yet. I have to admit, i am worried that they will wait too long to cut it off at the pass, but we'll see.
Our IPOP appointment tomorrow is at 9:30am and tonight, we'll enjoy going out to dinner with my friend Scott. If Trish isn't up to going out we'll bring her something back, but she insists she is up to going out. Stay tuned (if this doesn't make sense read the earlier Sunday post).
Our IPOP appointment tomorrow is at 9:30am and tonight, we'll enjoy going out to dinner with my friend Scott. If Trish isn't up to going out we'll bring her something back, but she insists she is up to going out. Stay tuned (if this doesn't make sense read the earlier Sunday post).
Getting better, or....
Welcome to Sunday. Trish and I enjoyed escaping downtown and our hospital sponsored apartment yesterday. We went to the Havre de Grace art show with Aunt Mary and John. We had a home cooked meal -- fresh eggplant and veggies in angel hair and Aunt Mary's famous chicken fingers.
For the last few days, Trish has looked like she was getting better. Her face's puffiness reduced quickly after starting the steroids and a few days later the redness in her skin started to reduce and around her elbows and knees it pretty much cleared up completely.
However, last night she showed me her belly and it actually looked redder. This morning, she woke up with a puffy face again. She says she doesn't feel much worse, but she's coughing, has redder patches and puffiness. When I asked about going into IPOP today just for a quick check, she didn't object as strongly as she would have normally. So I called into IPOP and asked if we could come in. Maybe it is just the country air. Maybe it is a cold. Maybe it is GvH disease. I don't think we should wait till Monday morning to find out. So, we'll head down to IPOP this afternoon for a quick check and back in on Monday for a GvH appointment.
Just when you thought you may be catching a break, you get reminded that this is a tough journey. A journey takes time. It takes you away from the things that are "normal". It is also a chance for discovery and excitement -- both good and bad.
For the last few days, Trish has looked like she was getting better. Her face's puffiness reduced quickly after starting the steroids and a few days later the redness in her skin started to reduce and around her elbows and knees it pretty much cleared up completely.
However, last night she showed me her belly and it actually looked redder. This morning, she woke up with a puffy face again. She says she doesn't feel much worse, but she's coughing, has redder patches and puffiness. When I asked about going into IPOP today just for a quick check, she didn't object as strongly as she would have normally. So I called into IPOP and asked if we could come in. Maybe it is just the country air. Maybe it is a cold. Maybe it is GvH disease. I don't think we should wait till Monday morning to find out. So, we'll head down to IPOP this afternoon for a quick check and back in on Monday for a GvH appointment.
Just when you thought you may be catching a break, you get reminded that this is a tough journey. A journey takes time. It takes you away from the things that are "normal". It is also a chance for discovery and excitement -- both good and bad.
Friday, August 17, 2007
Friday's update
We did a lot of waiting today. The labs were slow coming up and the GvH team was backed up. Trish is still fairly red today, but her throat and face immediately were better after the first day of steroids. We're (us and the medical team) hoping that the rash will completely clear by Monday. The GvH folks were a little upset at Trish's nurse practitioner today. She gave Trish another anti pneumonia drug and asked her to start it today. The GvH would have preferred that she didn't get that drug at al till they have cleared her. The GvH team also said that now that Trish has had the drug reaction, she is more apt to get GvH. Whew...it is never easy, is it!?
We have the weekend off from IPOP and we'll probably go visit Aun Mary tomorrow. Monday they will recheck Trish and possibly she'll get another skin biopsy from GvH. The GvH person confirmed what I said earlier -- Trish will probably be getting lots of skin biopsies over the next few weeks. Fun. Fun. We were both feeling positive that we would either be on track or early coming home. After today's visit, we know that we have to be patient again.
We have the weekend off from IPOP and we'll probably go visit Aun Mary tomorrow. Monday they will recheck Trish and possibly she'll get another skin biopsy from GvH. The GvH person confirmed what I said earlier -- Trish will probably be getting lots of skin biopsies over the next few weeks. Fun. Fun. We were both feeling positive that we would either be on track or early coming home. After today's visit, we know that we have to be patient again.
Thursday, August 16, 2007
Thursday
Good Morning. Yeah I know I am typing this at 12:42PM....but Trish and I were lazy this morning and slept in and than didn't do too much till the last hour. She completed her first day's dose of steroids and is feeling much better today. She still looks like a rock lobster, but it is starting to clear around her knees and her face is far less puffy than it was yesterday.
Remember this is he normal dose for a drug reaction. They still say she is GvH and Leukemia free. We both can't wait till this is just over with. We are so over this experience.
We have the day off from IPOP this morning, so I changed Trish's Hickman bandage today and we'll head in to IPOP tomorrow. Hoping to me even more clearer and less puffy. Trish's blood counts are great at the moment and hopefully they will stay that way. Look for an update tomorrow.
Remember this is he normal dose for a drug reaction. They still say she is GvH and Leukemia free. We both can't wait till this is just over with. We are so over this experience.
We have the day off from IPOP this morning, so I changed Trish's Hickman bandage today and we'll head in to IPOP tomorrow. Hoping to me even more clearer and less puffy. Trish's blood counts are great at the moment and hopefully they will stay that way. Look for an update tomorrow.
Wednesday, August 15, 2007
Welcome to Day 35
Well the second biopsy came back and it too is consistent with a drug reaction and not GvH, so they will start treating the drug reaction to make it go away faster. Assuming a clear chest CT which we took a little while ago, Trish will start a medral pack (normal allergic reaction steroids) tonight to force the drug reaction to an end. So, we do know that she is 100% donor cells, we don't think she has had any GvH as of yet. Her nurse practitioner told us today that at discharge her flow cytometry was normal and showed no signs of Leukemia. So despite Trish feeling awful, being puffed up and looking as red as a lobster, she is actually doing pretty well.
The only chemisty that is low on her at the moment is her magnesium level.
From an allergic reaction I had a while back the Medral pack should start relief for Trish shortly after the first pill and that is good news.
The only chemisty that is low on her at the moment is her magnesium level.
From an allergic reaction I had a while back the Medral pack should start relief for Trish shortly after the first pill and that is good news.
Tuesday, August 14, 2007
Greetings from IPOP
Well, we thought we were going to have a day off today.....Trish woke up last night (about 2:45a.m.) with a fever. Opting to do the right thing and not be quiet about it, she woke me up and we called in to the on call doctor. Dr. Swinnen called us back and said with no other major symptoms, it was ok to take some Tylenol and wait till morning. So a few Tylenol later we went back to bed. At about 7am I called IPOP and arranged for an appointment. They gave us a 12:30 appointment which meant it would be a long day. So here we sit, just about 2pm and waiting for labs to come back. Trish had her first nausea and fever today since her discharge. Her throat is red and sore. The throat culture they took on Sunday was negative, but something is making her throat red. No word yet on the second skin biopsy they took yesterday yet. Trish's nurse practitioner is off today and they were having trouble figuring out who was covering for her. I am sure someone will see her before we leave, just no sure yet, who.
Monday, August 13, 2007
Rock Lobster ala Med reaction not GvH (yet)
Well, we just met with the GvH team and they say that the rash is consistent with a drug reaction and not GvH. That's good news for now. It means that Trish will not get high dose steroids yet, but they took another skin biopsy today and will call us tomorrow if it is positive for GvH. This means Trish could be getting a whole lot of skin biopsies on the way to getting treated for GvH. If this second biopsy is still consistent with a drug reaction and shows no signs of GvH, they may treat Trish with a normal dose of steroids (Zpack kinda thing) just to help stop the rash. If they wait for the drug reaction to complete its course normally it could take a long while and mask a true GvH reaction.
A skin biopsy isn't fun - Trish has had two of them in her legs and today's was in her arm. They numb the area with two lidocaine shots -- which hurt more than the biopsy itself (that's the purpose of the lidocaine). Than they take a pencil looking device that is kind of like a metal punch and it punches out a piece of skin for them to pull out.
Anywho, they really believe this is a drug reaction (bactrim) which was stopped two days after her discharge.
Gotta run now...Trish wants to get out of the IPOP cause we are done.
A skin biopsy isn't fun - Trish has had two of them in her legs and today's was in her arm. They numb the area with two lidocaine shots -- which hurt more than the biopsy itself (that's the purpose of the lidocaine). Than they take a pencil looking device that is kind of like a metal punch and it punches out a piece of skin for them to pull out.
Anywho, they really believe this is a drug reaction (bactrim) which was stopped two days after her discharge.
Gotta run now...Trish wants to get out of the IPOP cause we are done.
Rock Lobster
Trish is looking a lot like a lobster today. IPOP is backed up today so we are still waiting to see the GvH team and get blood results, but at least they drew her blood pretty quick today. Stay tuned. It will probably be a long day of waiting today.
Sunday, August 12, 2007
The weekend and new thoughts and worries
Sorry to all of you who have been checking for a weekend update and wondering why there hasn't been one (till now). Rest assured that everything is ok. Yesterday (Sat) was a day off for us. We washed clothes in the morning and visited Aunt Mary for the rest of the day. It included stopping by the Havre de Grace Seafood Festival.
Trish looks a little like something from Star Wars (Dylan would be proud) when we are out in public....She has her mask and a hat, but often she will wear a light weight hooded jacket and put the hood on because she doesn't like hats....reminiscent of a Jedi Knight.
Trish is feeling pretty good. Tired, faigued but good. Her rash is a little redder today and we expect that the GvH team will want to start treating her with steroids tomorrow. She is not looking forward to that. Today, we did have an IPOP appointment and nothing of signifigance came of that. Trish blood counts are excellent, from that perspective she is practically normal. In fact I would say the recovery from the transplant is much easier than recovery from chemo -- of course with the one major exception of GvH. This is Trish's experience so far and not necessarily the same one for any other person.
Check in tomorrow late in the day and I am sure that I will have an update on the GvH situation. For those wondering about Andy, he is doing well. Chomping at the bit to drive again and he should make it in time for school. Talk to you all tomorrow (probably late in the day).
Trish looks a little like something from Star Wars (Dylan would be proud) when we are out in public....She has her mask and a hat, but often she will wear a light weight hooded jacket and put the hood on because she doesn't like hats....reminiscent of a Jedi Knight.
Trish is feeling pretty good. Tired, faigued but good. Her rash is a little redder today and we expect that the GvH team will want to start treating her with steroids tomorrow. She is not looking forward to that. Today, we did have an IPOP appointment and nothing of signifigance came of that. Trish blood counts are excellent, from that perspective she is practically normal. In fact I would say the recovery from the transplant is much easier than recovery from chemo -- of course with the one major exception of GvH. This is Trish's experience so far and not necessarily the same one for any other person.
Check in tomorrow late in the day and I am sure that I will have an update on the GvH situation. For those wondering about Andy, he is doing well. Chomping at the bit to drive again and he should make it in time for school. Talk to you all tomorrow (probably late in the day).
Friday, August 10, 2007
DAY 31 and GvH is officially here....
We jus finished meeting with the GvH team. Trish is officially having GvH. Her skin is red, pretty much everywhere, but her scalp. She is itchy much of the day and it is worse at night. They also gave her some fluids today, because she was slightly dehydrated. She never drinks enough.
Some good news. The RFLP (no clue what that stands for) results are in and she is showing 100% of the donor cells in her blood. She is officially part fireman.
So some GvH is good because it helps fight the disease, but full blown GvH is bad. They did a skin biopsy today to study the rash in her skin. We'll have those results on Monday and see how she looks and feels and on Monday, they will decide whether to treat her for GvH or continue to wait and see. All treatment for GvH involves high dose steroids over about 12 weeks.
They start high and ween her off the steroids over several weeks. GvH has about a 50% chance of coming back after the steroids. There is a clinical trial underway that uses one of 4 second drugs with the steroids in an effort to reduce the likelihood of GvH coming back. Trish being the good trooper that she is will likely choose to participate in the trial.
Another key indicator is liver function and kidneys. All of her counts on these are looking good. One other thing we learned today. Just because her white and neutrophil counts are good, doesn't mean she has a functioning immune system. You see the white and neutrophil cells are pre-occupied attacking her cells and though plentiful, don't act as a very good immune system against infection. The steroids help stop the immune system from attacking the host and help reteach them to focus on the real enemies of the body.
Monday we'll know whether she will bein treatment or stay in a wait and see mode. Things were going so well we thought we might get home early, but after today's visit with the GvH team it seems like we will be here for the long haul.
Some good news. The RFLP (no clue what that stands for) results are in and she is showing 100% of the donor cells in her blood. She is officially part fireman.
So some GvH is good because it helps fight the disease, but full blown GvH is bad. They did a skin biopsy today to study the rash in her skin. We'll have those results on Monday and see how she looks and feels and on Monday, they will decide whether to treat her for GvH or continue to wait and see. All treatment for GvH involves high dose steroids over about 12 weeks.
They start high and ween her off the steroids over several weeks. GvH has about a 50% chance of coming back after the steroids. There is a clinical trial underway that uses one of 4 second drugs with the steroids in an effort to reduce the likelihood of GvH coming back. Trish being the good trooper that she is will likely choose to participate in the trial.
Another key indicator is liver function and kidneys. All of her counts on these are looking good. One other thing we learned today. Just because her white and neutrophil counts are good, doesn't mean she has a functioning immune system. You see the white and neutrophil cells are pre-occupied attacking her cells and though plentiful, don't act as a very good immune system against infection. The steroids help stop the immune system from attacking the host and help reteach them to focus on the real enemies of the body.
Monday we'll know whether she will bein treatment or stay in a wait and see mode. Things were going so well we thought we might get home early, but after today's visit with the GvH team it seems like we will be here for the long haul.
Thursday, August 9, 2007
Thursday Update
Trish had a good day yesterday, but didn't sleep well. She was itchy all night long. The medicine they gave her at IPOP yesterday was different than the medicine that they prescribed for her to take last night. The prescribed med didn't work as well and Trish was up all night. We went over to IPOP this morning - even though we had the day off - so we could get a new prescription. They prescribed the same stuff she had during her visit yesterday and we hope that will give her a good sleep tonight. When we go back tomorrow we should get the results back from the RFLP test which will tell us how much of Trish's blood is hers and how much is her fireman's.
We met some folks at an ice cream social in the house last night. Nice folks, she was on the floor the same time as Trish and was released the same day as Trish -- she was autologous (used her own blood for transplant) -- so much less effects, they are going home to get their daughter ready to start college this weekend and will be back on Tuesday. They live near Hershey Pennsylvania.
You may remember me writing about our friends Joe and Annie. You may also remember me saying that Trish and I take each day one at a time and no matter how bad it gets, there is someone who is having a worse struggle than us. Joe and Annie are having that worse time at the moment and have the best attitude in face of adversity. She was recenly diagnosed with breast cancer and Joe's last treatment did not get his counts where they need to be for transplant. They are taking each day one at a time and praying for a good outcome. Please take some time today to pray for them, and their healing.
We met some folks at an ice cream social in the house last night. Nice folks, she was on the floor the same time as Trish and was released the same day as Trish -- she was autologous (used her own blood for transplant) -- so much less effects, they are going home to get their daughter ready to start college this weekend and will be back on Tuesday. They live near Hershey Pennsylvania.
You may remember me writing about our friends Joe and Annie. You may also remember me saying that Trish and I take each day one at a time and no matter how bad it gets, there is someone who is having a worse struggle than us. Joe and Annie are having that worse time at the moment and have the best attitude in face of adversity. She was recenly diagnosed with breast cancer and Joe's last treatment did not get his counts where they need to be for transplant. They are taking each day one at a time and praying for a good outcome. Please take some time today to pray for them, and their healing.
Wednesday, August 8, 2007
1st Day Out and things are looking good
Dinner stayed down and so did breakfast. Trish and I walked over to IPOP today and she did well on the walk. Her blood counts are great today despite a dip yesterday. Her nurse practitioner, Audra, told her that they may give the the day off tomorrow. That was a shocker - we expected to be in every day for at least a week.
If only she felt as good as her blood is doing. She didn't sleep well last night because she was itchy, it was her first night on Bactrim and I seem to remember that making her itchy in the past. Audra told her to stop the Bactrim and gave her a prescription to control the itching. So maybe she will be sleeping better tonight.
Her leg pain is still there and they still don't have a clue what it might be. They don't feel it is neuropathy any more -- at the moment. Well Trish is done and I haven't finished the update yet. Gotta go and they did give her tomorrow off...
If only she felt as good as her blood is doing. She didn't sleep well last night because she was itchy, it was her first night on Bactrim and I seem to remember that making her itchy in the past. Audra told her to stop the Bactrim and gave her a prescription to control the itching. So maybe she will be sleeping better tonight.
Her leg pain is still there and they still don't have a clue what it might be. They don't feel it is neuropathy any more -- at the moment. Well Trish is done and I haven't finished the update yet. Gotta go and they did give her tomorrow off...
Tuesday, August 7, 2007
The coin has been tossed
and Trish won. We are in the Hackerman=Platz house tonight. It was a long day of packing and carrying stuff for me. It was a happy day for Trish... To celebrate we went out for dinner tonight -- Outback and Trish ordered her favorite Outback thing -- the Chicken with Artichoke Hearts and Steamed Veggies.....It was like she had never seen food before (and if you have seen the Johns Hopkins food, you know she hasn't in about 34 days) -- now here is the best part..... She ate most of the meal, took home less than half of it for tomorrow and kept it down, right after she ate it, on the drive home and beyond.
This is the first full meal she has kept down since the July 4th start of the transplant and in and of itself is a major milestone. Maybe all she needed was to be out of her room. Her first IPOP appointment is tomorrow at 9am and she will have daily IPOP appointments for at least a week, but she is doing so well.
Her legs still ache, but she says it is not as bad as it was. She is mnore tired and fatigued than anything else at the moment.
We are both tired and I need to get some sleep. Goodnight.
This is the first full meal she has kept down since the July 4th start of the transplant and in and of itself is a major milestone. Maybe all she needed was to be out of her room. Her first IPOP appointment is tomorrow at 9am and she will have daily IPOP appointments for at least a week, but she is doing so well.
Her legs still ache, but she says it is not as bad as it was. She is mnore tired and fatigued than anything else at the moment.
We are both tired and I need to get some sleep. Goodnight.
Monday, August 6, 2007
Monday - a special day - but still in
Howdy and welcome to day 27 post transplant, day 6935 since Trish and I were married (today is our 19th anniversary) and day 33 of Trish's current hospitalization. They didn't release her yesterday or today and it's still a coin toss whether they will release her tomorrow or not.
Officially, She is not due for "early release" until Thursday, but they have been teasing her with the possibility of release since last late last week. They still aren't quite sure what is going on with her legs and the meds they are treating her with make her too sleepy to walk and test them out. She did have some cereal this morning and a carnation instant breakfast for lunch, but she needs to start eating more and the nausea is just not leaving to the point that she can even make believe she enjoys eating.
I'm hoping the meds wear off soon enough so I can take her for a walk. I guess the good news is I am getting some work done.
Stay tuned.
Officially, She is not due for "early release" until Thursday, but they have been teasing her with the possibility of release since last late last week. They still aren't quite sure what is going on with her legs and the meds they are treating her with make her too sleepy to walk and test them out. She did have some cereal this morning and a carnation instant breakfast for lunch, but she needs to start eating more and the nausea is just not leaving to the point that she can even make believe she enjoys eating.
I'm hoping the meds wear off soon enough so I can take her for a walk. I guess the good news is I am getting some work done.
Stay tuned.
Sunday, August 5, 2007
Sunday
I just spoke to Trish (from the airport)....She tells me that the doctors have decided to keep her in tonight. They still aren't sure what is causing the leg pain, bu the are leaning towards neuropathy now. She's taking new meds for it and we'll see how she does on them. That takes he pressure off of me and Ant Mary and company. Trish still doesn't sound great, but that's the amazing thing about Trish -- you can hear the pain in her voice and you can also hear her strength -- her desire to beat this disease, her desire to just get out of the hospital. She really is an amazing human being.
Saturday, August 4, 2007
Saturday Morning
I spoke with Trish late last night and than gave her nurse a call.
Last night she had Vanessa -- one of the handful of nurses that really makes me feel good leaving Trish alone at night. When I spoke to Trish she said that her legs hurt so bad that she didn't know how she would be able to function when she was discharged Sunday.
I called Vanessa and told her what Trish had just told me and asked her to include it on her chart and be sure the docs knew. Trish has been notorious for being agreeable with the docs in rounds and than complaining about stuff they should have known. Dr. Griffiths yelled at her about this before and I knew last night I had to call. Trish would kill me if she knew I called (so don't tell her please).
The ultra-sound of her legs showed no signs of thrombosis or any other issue, but the pain seems to be getting worse. Hopefully they will find something to make it better soon and if not, hold onto to her as an inpatient. I'll chat with Trish after rounds this morning and see what the current thinking is.
Last night she had Vanessa -- one of the handful of nurses that really makes me feel good leaving Trish alone at night. When I spoke to Trish she said that her legs hurt so bad that she didn't know how she would be able to function when she was discharged Sunday.
I called Vanessa and told her what Trish had just told me and asked her to include it on her chart and be sure the docs knew. Trish has been notorious for being agreeable with the docs in rounds and than complaining about stuff they should have known. Dr. Griffiths yelled at her about this before and I knew last night I had to call. Trish would kill me if she knew I called (so don't tell her please).
The ultra-sound of her legs showed no signs of thrombosis or any other issue, but the pain seems to be getting worse. Hopefully they will find something to make it better soon and if not, hold onto to her as an inpatient. I'll chat with Trish after rounds this morning and see what the current thinking is.
Friday, August 3, 2007
Sunday it is...
Trish called me late this afternoon to say that it is Sunday for sure at the earliest...They have a room for us as the Hackman-Platz House starting Sunday night. Her legs are still in pain when she stands, no word yet on the ultra sound they took of her legs to see what the cause might be. Hopefully we will know that tomorrow. The biggest outstanding item I have at home to fix is the air conditioner drain tube before I leave. Andy seems to be doing well. He got his stiches out this week. and had his second physical therapy appointment this afternoon. Tomorrow will be a busy day, I'll still try to take the boys out to a movie if I can squeeze it in.
Sounds like I caused a lot of other people as much stress as me with my last post....
Latest news is that there is no room at Rockwell on Saturday, so the will look at Sunday which means our plans can so far remain unchanged. M preference of course was for a Monday release. We'll figure it all out eventually. Trish does sound pretty good today. I think she is just looking forward to getting out. A month is long enough if you are the patient and you have been in hospitals since February..... Stay tuned.
Latest news is that there is no room at Rockwell on Saturday, so the will look at Sunday which means our plans can so far remain unchanged. M preference of course was for a Monday release. We'll figure it all out eventually. Trish does sound pretty good today. I think she is just looking forward to getting out. A month is long enough if you are the patient and you have been in hospitals since February..... Stay tuned.
As with everything, there is good news and bad news
So, Trish calls me this morning...sounding really good - or at least for her this week - and she says hey they want to let me out tomorrow. That really stinks for a lot of reasons. Just yesterday we asked if they could hold off on letting her out till Monday, so I have Sunday to get stuff organized. Now they are going in the opposite direction?! They said they couldn't justify to the insurance to keep her in. Only thing is she had a fever this morning...When she has a fever it is an automatic admit. So we are going to let her out and then likely readmit her the next day for a fever?!?!? This all kinda stinks - though I know Trish would really like to get out....the saga continues.....
Thursday, August 2, 2007
Thursday Afternoon
Spoke to Trish again, something I forgot to mention this am -- her legs hurt. They were taking her for an ultra sound to see if there was a reason for her legs to be hurting. Trish asked them if they could hold off from letting her out till Monday -- that'll give me some time on Sunday to organize our stuff at Aunt Mary's and bring it down to Rockwell Monday. I cold also go food shopping before I pick her up, cause she is not likely to feel well enough to shop by Monday with the way she is feeling today. So that will be ok. We'll get to celebrate our Anniversary on Monday - hopefully - out of the hospital.
If you were planning on sending something to Trish in the hospital, best to use Aunt Mary's address from here on out. There will be a delay in receiving stuff as we'll be at Rockwell, but once she's out they will return anything sent to her.
Lots to do at home before heading back up so it will be a busy next few days.
If you were planning on sending something to Trish in the hospital, best to use Aunt Mary's address from here on out. There will be a delay in receiving stuff as we'll be at Rockwell, but once she's out they will return anything sent to her.
Lots to do at home before heading back up so it will be a busy next few days.
What a difference a day makes....
Truly Breaking News (of the good kind)...After a week of not being able to get through a conversation without vomiting....Trish called me this morning. She sounds good. Her rash and fevers are better and they asked her when I would be back... She said Sunday and they said good, we'll let you out on Sunday.
That puts a lot of pressure on me as we will need to move into the Rockwell house across the street from the hospital on Sunday and most of our stuff is back at Aunt Mary's house and I don't land till at least 2pm. Whew - I'm tired already. We'll have to food shop....They couldn't wait just one more day?! Anyway, Trish is excited and she should be, this is all good news. Within a week or so I should know what our insurance status is and I'll have to start the 63 day dash to try and implement something.
With so much bad news this week folks dieing, bridges collapsing, thought you all could use a dose of something positive.
That puts a lot of pressure on me as we will need to move into the Rockwell house across the street from the hospital on Sunday and most of our stuff is back at Aunt Mary's house and I don't land till at least 2pm. Whew - I'm tired already. We'll have to food shop....They couldn't wait just one more day?! Anyway, Trish is excited and she should be, this is all good news. Within a week or so I should know what our insurance status is and I'll have to start the 63 day dash to try and implement something.
With so much bad news this week folks dieing, bridges collapsing, thought you all could use a dose of something positive.
Wednesday, August 1, 2007
It continues to be a bad week...
Just spoke with Trish and she sounds awful one minute and ok the next....She is very sick, still nauseated and now has a rash. They are telling her it is not Graft versus Host disease, but they are going to start her on steroids today. She was too sick to get her counts for me. She said she missed me because, I would make her walk or better put, if I were there she would make us walk, but it is too hard to walk alone.
It is a good week for intense prayer, this is the promised rough time and it should pass.
It is a good week for intense prayer, this is the promised rough time and it should pass.
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