Today has to be one of the happiest days of my life. The morning started off with news of a 4500 white blood cell count and no need for any transfusions. The doctor rushed through the discharge papers as we were all packed up and ready to go. They sent us away with hugs, good-wishes, and an extensive list of do's and don'ts at home.
When we arrived at the house, my mom cried. She kissed the doorway in excitement! I followed her around the house while she blissfully looked in each room. She kept saying, "I just never thought I would see my house again." After a couple laps around the house, she showered, ate lunch (an entire mini-pizza) at the kitchen table, and then crawled in her cozy bed for a much-needed and well-deserved nap.
I am so thankful to so many people who helped get us all through this mess. A long list of beautiful nurses, an intelligent team of doctors, my strong stepdad, and all my friends and family sending us positive thoughts from home. It is just such a miracle! or pretty damn amazing science.
We are definitely not in the clear. She has to be watched closely for infection, visit the clinic once a day for bloodwork, have a couple minor surgeries, receive monthly pulmonary tests, and maintain a special diet for immuno-suppressed patients that is low in Vitamin K (as to not counter the blood thinners) and high in cancer fighting nutrients all while having little to no appetite. Mandi and I are on it! She will get a scan on day +100 to see if the cancer is gone and then will regain her energy level between 6 months and a year. In the meantime, she has to stay away from public places until her wbc completely recover. She is able to have limited visitors and can't be around kids at all. It's no picnic, but it's all just an inconvenice compared to the mountain she just climbed.
Thank goodness, the hard part has passed. Now on to a new life for us all. Our new mantra is: New Cells. New Rules, which basically means she needs to stop living her life out of obligation and start living in the present for herself! I love you mom!
Friday, December 4, 2009
Thursday, December 3, 2009
Day +10
Snow is my new favorite thing. The doctor told us it is suppose to snow again tomorrow, which also happens to be my mom's projected release day. She is scamming a way to get out of here today! Her counts doubled again last night. She is up to 1300 white blood cells!!
Last night wasn't too eventful. She had some stomach problems from all the antibiotics (which they took her off of today!). She also had an allergic reaction to one of them that made a rash develop on her legs and arms. It is almost gone this morning, though. What do they expect giving her 4 different antibiotics.
Other than that, we are just waiting and smiling. In the meantime, she is trying to lure me into her plot to go home today. We are working out what to say to the doctors as I type...
Last night wasn't too eventful. She had some stomach problems from all the antibiotics (which they took her off of today!). She also had an allergic reaction to one of them that made a rash develop on her legs and arms. It is almost gone this morning, though. What do they expect giving her 4 different antibiotics.
Other than that, we are just waiting and smiling. In the meantime, she is trying to lure me into her plot to go home today. We are working out what to say to the doctors as I type...
Wednesday, December 2, 2009
Day +9!
Today was magical. We woke this morning to heavy, white snow fall the 2nd week in December! Immediately following, the team of doctors arrived with the best news of my entire life! My mom's white blood cell count is at .5!! Engraftment! The stem cells produced disease fighting cells, and on top of that, the count is suppose to double tomorrow. They projected her release day for this Friday. We cried like babies all morning. Nothing else mattered. I finally feel that we have our lives back. It's only up from here.
I could tell the change in energy last night. At around 9:00pm her fever broke and then about 1:00am she became really chatty. I felt like we were having a slumber party. We joked and laughed and talked for at least an hour. We both attributed it to a breaking fever, but we secretly hoped it was a climbing wbc count.
Since her neutrophils are still only 300, she continues on one of the antibiotics, a bag of potassium and antifungals. Tomorrow she will hopefully be off everything but fluids. She will go home with a year prescription of antivirals and orders to rest, rest, rest!
After we calmed down from the excitement and emotion, my mom had the energy to bathe and walk a lap around our hallway. This was exciting for me since she hasn't been out of bed (except for bathroom breaks) for days. A few minor set backs in the day happened after the walk. She had a strange rash break out on both her legs. We are waiting for the doctor to come and diagnose it. Then after lunch she had some more stomach issues. The nurse is going to take the last culture of that. I hope it is just from her body processing all the medication being pumped into her.
We also found out that Mandi is fighting bronchitis and can't come in to town with the baby tomorrow. She will have to postpone her trip until she gets well. Mom and I were looking so forward to seeing them this week.
However, as long as my mom is well enough to go home and begin the road to recovery, we can handle anything! Signing off a happy camper.
I could tell the change in energy last night. At around 9:00pm her fever broke and then about 1:00am she became really chatty. I felt like we were having a slumber party. We joked and laughed and talked for at least an hour. We both attributed it to a breaking fever, but we secretly hoped it was a climbing wbc count.
Since her neutrophils are still only 300, she continues on one of the antibiotics, a bag of potassium and antifungals. Tomorrow she will hopefully be off everything but fluids. She will go home with a year prescription of antivirals and orders to rest, rest, rest!
After we calmed down from the excitement and emotion, my mom had the energy to bathe and walk a lap around our hallway. This was exciting for me since she hasn't been out of bed (except for bathroom breaks) for days. A few minor set backs in the day happened after the walk. She had a strange rash break out on both her legs. We are waiting for the doctor to come and diagnose it. Then after lunch she had some more stomach issues. The nurse is going to take the last culture of that. I hope it is just from her body processing all the medication being pumped into her.
We also found out that Mandi is fighting bronchitis and can't come in to town with the baby tomorrow. She will have to postpone her trip until she gets well. Mom and I were looking so forward to seeing them this week.
However, as long as my mom is well enough to go home and begin the road to recovery, we can handle anything! Signing off a happy camper.
Tuesday, December 1, 2009
Day +8
Another crappy day. I got back to the hospital around 10:30 this morning after catching up on sleep (12 hours) at my mom's house. Tim took care of her last night. From the updates, she ran a fever most of the night, but luckily woke up this morning without one. They ran a bunch of tests to check for infection. Chest xray, urine sample, blood samples. All came out clear today. Her fever spiked this afternoon, again right after the platelet transfusion (which she had to have again today.) It is now hovering around 100.3. They just came in and told us that if it gets to 100.5 they will do another round of tests. Unfortunately we don't find out those results for 24 hours. She has been given 4 bags of antibiotics since the first fever, so hopefully we are catching any infection.
As far as her blood counts, her wbc are still at 0.0, platelets are 10, and red blood cells 80, I think. She needed a platelet transfusion, which by the way, is the nastiest color yellow I have ever seen, and a bag of potassium. In addition to all that junk, they have her on the normal cocktail of antibiotics, anitvirals, antifungals, and fluids.
It is just a waiting game at this point. I am praying we will see some white blood cells in the next couple days. We will all feel so much better. In the meantime, I am trying my best to keep my mom positive and moving as much as possible so fluid won't build up and clotting won't occur. The physical therapist showed us some bed exercises to do. We both worked out our butt muscles yesterday.
Mandi and I are planning her diet when she returns home. For the first couple months she is on a immuno-suppressed diet, which means she has to be careful with fresh foods. Then she will be back on the blood thinners (for the rest of her life) so we have to monitor her levels of Vitamin K. It will be a hard balance to coordinate foods that are cancer fighting and foods that aren't too high in Vit K, so that her blood clots will be managed. We almost have it down.
Back to my bench. I hope my mom has a better night. At least one without fever, infection, nausea, or stomach pains. Something comfortable. And lots of sleep! For us both.
All the nurses and doctors on this wing love her. Her sweetness is infectious. Everyone is routing for her, especially the peson who loves her most!
As far as her blood counts, her wbc are still at 0.0, platelets are 10, and red blood cells 80, I think. She needed a platelet transfusion, which by the way, is the nastiest color yellow I have ever seen, and a bag of potassium. In addition to all that junk, they have her on the normal cocktail of antibiotics, anitvirals, antifungals, and fluids.
It is just a waiting game at this point. I am praying we will see some white blood cells in the next couple days. We will all feel so much better. In the meantime, I am trying my best to keep my mom positive and moving as much as possible so fluid won't build up and clotting won't occur. The physical therapist showed us some bed exercises to do. We both worked out our butt muscles yesterday.
Mandi and I are planning her diet when she returns home. For the first couple months she is on a immuno-suppressed diet, which means she has to be careful with fresh foods. Then she will be back on the blood thinners (for the rest of her life) so we have to monitor her levels of Vitamin K. It will be a hard balance to coordinate foods that are cancer fighting and foods that aren't too high in Vit K, so that her blood clots will be managed. We almost have it down.
Back to my bench. I hope my mom has a better night. At least one without fever, infection, nausea, or stomach pains. Something comfortable. And lots of sleep! For us both.
All the nurses and doctors on this wing love her. Her sweetness is infectious. Everyone is routing for her, especially the peson who loves her most!
Monday, November 30, 2009
Day +7
Last night was a bad night for both of us. Neither of us could sleep and my mom fought nausea and a stomach ache all night. She woke up feeling the same. Just altogether horrible. I can't believe how bad she looks and feels. And the doctor keeps saying this is completely normal. Her wbc is still .0. her platelets and red blood cells dropped so they are going to start a platelet transfusion in a bit. She is now receiving 200 mg of Flucanazole, an antifungal, followed by the typical regimen of antibiotics, antivirals, and antinausea meds as needed. She is still hooked up to the saline solution for dehydration since she can't eat or drink anything (besides a few sips of coke, which is bizarre- she hasn't had coke since before I was born). They are also giving her another shot of Nupegeon to stimulate her new stem cells to produce wbc first. It's so fascinating that science has come this far.
Before I go to bed every night, I repeat my mantra: "engraft, engraft, engraft." The doctor thinks she is right on track. They said she will begin to see some white blood cells in a couple days. Once we see a few, we should expect exponential growth. They are still estimating our release day either Sunday or Monday. One week left. Seems like forever to us both. I just can't imagine her feeling this way for another 5 days! It takes everything she has to just sit up in bed. She keeps her hand over her eyes to shade the light from the window (which we keep open all the time to remind us of a world to get back to). She has hardly spoken today, even to the doctor and nurses. I am trying to be so positive about it all, but I honestly hate seeing her this way. It just makes me so sad and scared. I know she will get better, I really do. I just don't want to leave her side until I know that the white blood cells are back and fighting for her. It's almost that I have to fight for her until her body will.
In the meantime, I have finished four novels and about 10 magazines, caught up on video poker strategies, perused facebook to exhaustion, read car reviews, worked on the nonprofit, paced the hallway for exercise, written this blog, made a nutrition plan for my mom, finished several crossword puzzles, relearned about electricity on wikipedia, and tried to sleep (which is mostly just lying awake thinking). i'd say I keep pretty busy. In between my endeavors, I check my mom's breathing. I do this all night, even though the nurse checks her vitals every couple hours.
I pray, that if she can't have a better day today, then she sleeps through it. So far, so good.
Before I go to bed every night, I repeat my mantra: "engraft, engraft, engraft." The doctor thinks she is right on track. They said she will begin to see some white blood cells in a couple days. Once we see a few, we should expect exponential growth. They are still estimating our release day either Sunday or Monday. One week left. Seems like forever to us both. I just can't imagine her feeling this way for another 5 days! It takes everything she has to just sit up in bed. She keeps her hand over her eyes to shade the light from the window (which we keep open all the time to remind us of a world to get back to). She has hardly spoken today, even to the doctor and nurses. I am trying to be so positive about it all, but I honestly hate seeing her this way. It just makes me so sad and scared. I know she will get better, I really do. I just don't want to leave her side until I know that the white blood cells are back and fighting for her. It's almost that I have to fight for her until her body will.
In the meantime, I have finished four novels and about 10 magazines, caught up on video poker strategies, perused facebook to exhaustion, read car reviews, worked on the nonprofit, paced the hallway for exercise, written this blog, made a nutrition plan for my mom, finished several crossword puzzles, relearned about electricity on wikipedia, and tried to sleep (which is mostly just lying awake thinking). i'd say I keep pretty busy. In between my endeavors, I check my mom's breathing. I do this all night, even though the nurse checks her vitals every couple hours.
I pray, that if she can't have a better day today, then she sleeps through it. So far, so good.
Sunday, November 29, 2009
Day +6
So far, today has been better than yesterday. My mom seems to have a tiny more pep, although she still feels super crappy. The doctor said that she is still doing great besides her mouth sores and tiny bit of leftover stomach issues. Still can't believe this condition is considered "great." Her WBC are at .1 again but her platelets and rbc counts are steady enough to skip any transfusions. yay! She still receives 2 doses of Levoquin (antibiotic), 2 doses of Acyclovir (antivirals), Ativan if she can't sleep, and either Zofran or Phenagrin for nausea. I thought that after the stem cell transplant, she was finished with the drug pumping. I guess it was just the beginning. The doctors told us she will take the antivirals for an entire year (and get all her immunization shots again). It's so crazy to think that they basically killed her to bring her back. I am just so thankful that her stem cells are back in her body.
My mom hasn't really been able to eat much today. she took a nibble of a saltine cracker and washed it down with a sip of coke, the only thing that appeals to her. It made her really nauseous so the nurse gave her some Nexium through the IV. This sometimes helps settle an acidic stomach. She has pretty much just dozed on and off all day, although when she wakes she can talk to me some. She was even able to sit up a bit to watch slideshow of pictures Mandi sent of the baby. It was the highlight of both our days. It's funny how your perspective on life changes after being confined to a small room for days. I forget that a world exists outside these walls.
Aye, my tangents.
So, Mandi is coming this Thursday (Day+10) . It gives us both something to look forward to. I am doing pretty well, considering. I finally fell asleep at 5 am this morning and slept lightly until about 10. I am feeling the wave of tired hit, so I plan to doze a little this afternoon. Passes the time nicely. Plus, Andrew brought my comfy sleeping bag back from Austin. Made such a difference last night.
All in all the day has been calm for our room, which is more than welcomed after the last couple of days. Our nurse staff is great again and the IV pole has been quiet. Hopefully it will stay this way. The only commotion occurred this morning when a transplant patient was taken to ICU. These patients have already been through hell, I can't imagine any more trauma. Going to lay down and take a nap now. Maybe I can sleep until next Saturday...
My mom hasn't really been able to eat much today. she took a nibble of a saltine cracker and washed it down with a sip of coke, the only thing that appeals to her. It made her really nauseous so the nurse gave her some Nexium through the IV. This sometimes helps settle an acidic stomach. She has pretty much just dozed on and off all day, although when she wakes she can talk to me some. She was even able to sit up a bit to watch slideshow of pictures Mandi sent of the baby. It was the highlight of both our days. It's funny how your perspective on life changes after being confined to a small room for days. I forget that a world exists outside these walls.
Aye, my tangents.
So, Mandi is coming this Thursday (Day+10) . It gives us both something to look forward to. I am doing pretty well, considering. I finally fell asleep at 5 am this morning and slept lightly until about 10. I am feeling the wave of tired hit, so I plan to doze a little this afternoon. Passes the time nicely. Plus, Andrew brought my comfy sleeping bag back from Austin. Made such a difference last night.
All in all the day has been calm for our room, which is more than welcomed after the last couple of days. Our nurse staff is great again and the IV pole has been quiet. Hopefully it will stay this way. The only commotion occurred this morning when a transplant patient was taken to ICU. These patients have already been through hell, I can't imagine any more trauma. Going to lay down and take a nap now. Maybe I can sleep until next Saturday...
Saturday, November 28, 2009
Day +5
I hate Day +5. A lot has happened since I last wrote. Yesterday I was told not to come back to the hospital. I couldn't tell why my mom didn't want me there. I could sense something was wrong. I finally got a call from her that evening. She told me that the nurses were concerned that she might have C-def, a bacterial growth that causes severe diarrhea. I found out that yesterday was the worst day she has had in her life.. her words. She had to have 2 bags of blood, which I guess went ok. She got extremely nauseous and had stomach issues all day. She said she felt horrible and fluish. On top of feeling this terrible, the hospital was short-staffed (which is unacceptable on this floor). There were only 2 nurses on the entire floor and one was completely incompetent. She spilled blood twice and wasn't taking proper precautions to keep things sanitized. We heard that the entire floor complained. My mom requested to never have her again and today we have the best nurse on the floor. She even gave me tips on a good bathroom to use.
So, this morning Dr. V told us not to worry about the C-def infection, if that is the case. She said it is treatable (which is contrary to what I read online). We just recently were told that the preliminary culture came out negative. I was advised to be extremely careful around my mom right now. Her WBC is finally at 0.0 and will stay that way for another 5-10 days.-I can't imagine. The doctor also told her she is doing great. I can't believe you can be doing great in this condition! She said that the greatest risk we have at this point is an infection and not to get scared if that happens. It is suppose to be routine. Hmm.
When I first saw my mom this morning, my breath was taken. I have never seen her look so terrible. I am really scared for the first time. There is just so much risk at this point and there will continue to be for at least 5 more days. I can't imagine. Just when I thought things were looking great, I feel scared and discouraged. I am of course, not showing this to my mom. She is extemely drugged right now- they gave her a higher dose of benedryl before the platelet transfusion. She keeps falling asleep and waking up and slurring her words and just seems uncomfortable. I HATE this for her. This is everything we were warned about and I expected, I just had no idea it would hit me this way. Last night I begged Andrew to stay after the news of a potential infection. I couldn't sleep. I felt so helpless and out of control. I can handle things fine when I'm here. It's when I'm away that they seem to fall apart.. on my end and on hers.
I know we will get through this. I plan on staying here for the next 5 days in a row, so that Tim doesn't expose her to anything inadvertently. I love my mom more than words. I honestly don't know what I would do without her. I try to get through it by imagining what things will be like when she gets well. I think about going shopping with Mandi and Rell and hanging out at my house and going out in Dallas and finally enjoying life without worry.
Sorry to ramble. Just so many jumbled thoughts going through my head. Need to escape for a bit.
Will come back and finish the day.
So, this morning Dr. V told us not to worry about the C-def infection, if that is the case. She said it is treatable (which is contrary to what I read online). We just recently were told that the preliminary culture came out negative. I was advised to be extremely careful around my mom right now. Her WBC is finally at 0.0 and will stay that way for another 5-10 days.-I can't imagine. The doctor also told her she is doing great. I can't believe you can be doing great in this condition! She said that the greatest risk we have at this point is an infection and not to get scared if that happens. It is suppose to be routine. Hmm.
When I first saw my mom this morning, my breath was taken. I have never seen her look so terrible. I am really scared for the first time. There is just so much risk at this point and there will continue to be for at least 5 more days. I can't imagine. Just when I thought things were looking great, I feel scared and discouraged. I am of course, not showing this to my mom. She is extemely drugged right now- they gave her a higher dose of benedryl before the platelet transfusion. She keeps falling asleep and waking up and slurring her words and just seems uncomfortable. I HATE this for her. This is everything we were warned about and I expected, I just had no idea it would hit me this way. Last night I begged Andrew to stay after the news of a potential infection. I couldn't sleep. I felt so helpless and out of control. I can handle things fine when I'm here. It's when I'm away that they seem to fall apart.. on my end and on hers.
I know we will get through this. I plan on staying here for the next 5 days in a row, so that Tim doesn't expose her to anything inadvertently. I love my mom more than words. I honestly don't know what I would do without her. I try to get through it by imagining what things will be like when she gets well. I think about going shopping with Mandi and Rell and hanging out at my house and going out in Dallas and finally enjoying life without worry.
Sorry to ramble. Just so many jumbled thoughts going through my head. Need to escape for a bit.
Will come back and finish the day.
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