[guest author Dada]
I'm with Evy right now at the hospital, and she's doing pretty well. This morning we weighed her and she's 10.5 kg, which is up a whole kilogram from a week ago! If she keeps this up all year, she'll be 62.5 kg on her third birthday, which is about 137 pounds, which is probably too much for a 3 year old. American kids these days. But, because of her weight, we'll be taking her off of her IV nutrients, and just giving her nutrients via her feeding tube. She also doesn't need white blood cell injections since her counts are so good. And antibiotics should be finished in a couple of days. Her mouth sores are also looking much better, and she let me clean in her mouth some this morning, whereas usually she won't let me anywhere near it. Hopefully, she'll want to start eating and drinking soon. Other than that, she is mainly just dealing with congestion, and trying to cough everything up. It's definitely wearing her down, as she can't quite get everything up out of her throat. But her chest is clear, so it's just a drainage issue.
After weighing her this morning, I picked her up to let her look around a bit. Then I felt a bit warm. Great, I thought, she's peeing on me again. (Last time I was here, I quickly ran out of clothes and had to wear scrubs. This time, I brought a lot of clean clothes.) As I looked down, I realized she wasn't peeing, but rather having a diaper busting bout of diarrhea all over both of us. I froze and called in the nurse; professional help was needed. As this finished, she also coughed/vomited up a large batch of mucus on both of us. And, in doing so, gave herself a gushing nose bleed. Needless to say, it took a half an hour, two nurses, several towels and washcloths, and a basin of warm soapy water to get everyone comfortable. Great way to start the day!
But, now we're calm and happy, except for a bit of a headache on my part, due in part to the Gobi-esque warmth and dryness of the hospital (I had a nose bleed this morning as well). Hopefully we'll keep getting better and better and needing less and less tubes of stuff going into her.
Happy new year!
Thursday, December 31, 2009
Wednesday, December 30, 2009
Wednesday 12/30/09
Well, things are mostly the same with Evy today. Brian and I did a changing of the guards today and he said that he would update the blog since he is actually with the Evster. Lately he has even been threatening to come up with his own rivaling blog about Evy to see whose would get the most hits. We are very competitive with one another, say in Scrabble, etc., but that would be taking it a bit far, don't you think?
Evy is still nauseous, still has horrible mouth sores, and is still pretty weak. Today she and Stella got their first (temporary) tattoos from a nurse. We took pictures and we'll have to get them on here soon.
We are working on Boston plans. We have to go up earlier to get a special MRI for Evy and we will probably just stay there instead of coming home for a week. Our doctor is working on getting us a sweet ride in a corporate jet through the charity Corporate Angels. They have a one child policy but we're hoping they'll make an exception so Brian doesn't have to drive Stella all of the way up there. So we're looking at a mid-to-late January departure. Still don't have exact dates.
That's all, folks. 'Til tomorrow,
Jill
Evy is still nauseous, still has horrible mouth sores, and is still pretty weak. Today she and Stella got their first (temporary) tattoos from a nurse. We took pictures and we'll have to get them on here soon.
We are working on Boston plans. We have to go up earlier to get a special MRI for Evy and we will probably just stay there instead of coming home for a week. Our doctor is working on getting us a sweet ride in a corporate jet through the charity Corporate Angels. They have a one child policy but we're hoping they'll make an exception so Brian doesn't have to drive Stella all of the way up there. So we're looking at a mid-to-late January departure. Still don't have exact dates.
That's all, folks. 'Til tomorrow,
Jill
Tuesday, December 29, 2009
Tuesday 12.29.09
Today Evy had a decent day. She is very nauseous and also has mucusitis, a common side effect of chemo. We have a sucking device similar to what a dentist uses and we suck Evy's excess mucus out all day and night. She hates it! Her mouth sores are still pretty bad and to top it all off she is getting four new molars at the same time. Despite that, we had a pretty fun day with our occupational, physical, and speech therapists.
The last couple of days I have been asking our nurses to watch Evy so that I can get out for walks, which has been wonderful. Cold, wintry air mixed with sunshine is one of my all-time favorite things. Sitting in a hospital room all of the time was making me feel like I was turning into an Oreo. (:
The last couple of days I have been asking our nurses to watch Evy so that I can get out for walks, which has been wonderful. Cold, wintry air mixed with sunshine is one of my all-time favorite things. Sitting in a hospital room all of the time was making me feel like I was turning into an Oreo. (:
Monday, December 28, 2009
Monday
Evy's doing pretty well. Her E Coli infection has cleared up, and a sinus infection they detected in the MRI seems to have at least left the worst behind (I hope.) They are keeping an eye on the blood clots that were forming in her arm from her central line. She got her feeding tube put back in this morning and will start feeds soon. He mouth sores are still bad but she is able to nurse again. Her ANC levels are coming up. Some important mineral levels are low and they think that it will be some time before she leaves. In fact, they think that she will be here until her next round of chemo starts a week from today. Her sleep has been out of whack. We spent most of last night awake. She is on so many medicines that she has alarms signaling and nurses entering all night. Gotta love a schedule that includes a 10 pm and 3 am shot in the arm. (:
Sunday, December 27, 2009
One Day at a Time
The Christmas before the girls were born, Brian got me a cd I had wanted for years: a cd of 100 television theme songs. It came in handy when the girls were born 12 days later and spent six bumpy weeks in the NICU. We had a long drive between our home and the hospital and a lot of stress. We would often blast the tv theme songs the whole way to the hospital and sing along as loudly and as obnoxiously as possible.
Several weeks ago when I started making the long drive to a hospital again, I looked around the car for something to listen to. In this iPod age there are few cds to be found in our cars. One of the TV theme song discs was still in the car and I popped it in. Track one resonated with me. There will be car drives where I will get from Point A to Point B and I have only listened to this song over and over... perhaps punctuated with the themes from All in the Family and The Jeffersons for some variety. The lyrics to this song sum it all up, and by the time I get to "somewhere there's music playing..." my mood is lifted. Who knew a cheesy tv show from the 70s could offer such inspiration?
Several weeks ago when I started making the long drive to a hospital again, I looked around the car for something to listen to. In this iPod age there are few cds to be found in our cars. One of the TV theme song discs was still in the car and I popped it in. Track one resonated with me. There will be car drives where I will get from Point A to Point B and I have only listened to this song over and over... perhaps punctuated with the themes from All in the Family and The Jeffersons for some variety. The lyrics to this song sum it all up, and by the time I get to "somewhere there's music playing..." my mood is lifted. Who knew a cheesy tv show from the 70s could offer such inspiration?
Saturday, December 26, 2009
Saturday
Evy had surgery today to remove her central line in her chest and put a new one in in her groin area. The original central line was causing blood clots. They will wait a few days and put a new central line in her chest in the other side. She is currently in the PICU. Brian had a scare last night when she stopped breathing for a few seconds. She was on morphine for all of the pain she was experiencing.
Friday, December 25, 2009
Christmas
We're still so pleased with the MRI results, but this journey is a tough one and it is filled with simultaneous highs and lows. Evy's MRI showed no regrowth of her original tumor, and no other brain tumors whatsoever. No evidence of disease. This tells us that the current mix of chemotherapy drugs seems to be working. AT/RT is very aggressive and it would not be unheard of for her tumor to have regrown at a fast rate, so this is reassuring news.
However, one of the myriad side effects of chemo is Evy getting very sick in between rounds. She is currently the sickest I have seen her since before her brain surgery. Her bacterial infection is E. Coli and she may have gotten it from herself. We all have E. Coli in our bodies. She may have a leak somewhere within her body, or she may have gotten it externally. They are not sure yet. Evy is feverish, nauseous, lethargic and weak. She has horrible mouth and throat sores that are inhibiting her from taking anything orally. Our oncologist is concerned that her fevers are continuing when they should not, so today her Christmas gifts will be a series of body scans to see what is going on. UPDATE: One of her scans showed a blood clot in her arm that was causing her hand to enlarge. Scary, right?
Normally in Hem/Onc, because of H1N1, we are not allowed to have anyone visit Evy but Brian and myself. Luckily they made an exception yesterday and Stella was allowed to go to the hospital to see Evy for the first time ever. It was so much nicer to have all four of us in Evy's room than to have us separated by so many miles. Evy was dreadfully ill, but a least we were together. We rarely use RMH anymore because we keep Stella quarantined, too, but last night we made an exception for Christmas. We had dinner together as a family (take-out from Sunflower Vegetarian, one of our very favorite spots and thankfully it is near the hospital.) Brian and Stella slept at "Ronald's House" while Evy and I stayed at the hospital together. We were so excited to see Santa this morning as a family, but poor Evy slept right through it. Stella saw Santa for the first time and he even hand-delivered her gifts. She was very excited (and very, very shy!)
Stella has been unbelievable through all of this. In the hospital room while Mama and Dada focus heavily on Evy much of the time, she wanders around the room playing with toys and keeping herself occupied. You wouldn't even know she was there at times. She just knows that Evy has a boo-boo and needs our help. She is truly the biggest sweetheart I have ever met.
Stella and I just drove home. We couldn't keep her confined in there much longer. Brian will stay there with Evelyn 'til Sunday and then I will relieve him so that he can go back to work. Brian is the most devoted, sweetest father. Last night when Evy would wake up and get sick, she would often point weakly at the door. I would say, "do you want dada?" and she grunted, "yah." She cannot nurse at this time so I am able to be with Stella. I will start pumping breastmilk for Evy so that she can have it through her tube. I called a Milk Bank the other day to see about getting a larger supply for her. The woman on the phone told me that many adult cancer patients are buying it for themselves as some studies show its power in fighting cancer. The cost: $4.50 per ounce. Woah! I will pump, thank you!
Merry Christmas to all! NEXT year will be our year. Two years ago on Christmas I was in the hospital scared-to-death because I went into pre-term labor at 29 weeks with Stella and Evy. Last year we were quarantined because they were preemies and it was RSV season. This year, well, this year you know about. NEXT year I will be like Clark W. Griswold and make our house visible from space with all of the Christmas lights. And then I will post a picture here of us all smiling around the tree. Just you wait!
A quote in Evy's hospital room from an Emily Dickinson poem is bolstering my spirit today:
However, one of the myriad side effects of chemo is Evy getting very sick in between rounds. She is currently the sickest I have seen her since before her brain surgery. Her bacterial infection is E. Coli and she may have gotten it from herself. We all have E. Coli in our bodies. She may have a leak somewhere within her body, or she may have gotten it externally. They are not sure yet. Evy is feverish, nauseous, lethargic and weak. She has horrible mouth and throat sores that are inhibiting her from taking anything orally. Our oncologist is concerned that her fevers are continuing when they should not, so today her Christmas gifts will be a series of body scans to see what is going on. UPDATE: One of her scans showed a blood clot in her arm that was causing her hand to enlarge. Scary, right?
Normally in Hem/Onc, because of H1N1, we are not allowed to have anyone visit Evy but Brian and myself. Luckily they made an exception yesterday and Stella was allowed to go to the hospital to see Evy for the first time ever. It was so much nicer to have all four of us in Evy's room than to have us separated by so many miles. Evy was dreadfully ill, but a least we were together. We rarely use RMH anymore because we keep Stella quarantined, too, but last night we made an exception for Christmas. We had dinner together as a family (take-out from Sunflower Vegetarian, one of our very favorite spots and thankfully it is near the hospital.) Brian and Stella slept at "Ronald's House" while Evy and I stayed at the hospital together. We were so excited to see Santa this morning as a family, but poor Evy slept right through it. Stella saw Santa for the first time and he even hand-delivered her gifts. She was very excited (and very, very shy!)
Stella has been unbelievable through all of this. In the hospital room while Mama and Dada focus heavily on Evy much of the time, she wanders around the room playing with toys and keeping herself occupied. You wouldn't even know she was there at times. She just knows that Evy has a boo-boo and needs our help. She is truly the biggest sweetheart I have ever met.
Stella and I just drove home. We couldn't keep her confined in there much longer. Brian will stay there with Evelyn 'til Sunday and then I will relieve him so that he can go back to work. Brian is the most devoted, sweetest father. Last night when Evy would wake up and get sick, she would often point weakly at the door. I would say, "do you want dada?" and she grunted, "yah." She cannot nurse at this time so I am able to be with Stella. I will start pumping breastmilk for Evy so that she can have it through her tube. I called a Milk Bank the other day to see about getting a larger supply for her. The woman on the phone told me that many adult cancer patients are buying it for themselves as some studies show its power in fighting cancer. The cost: $4.50 per ounce. Woah! I will pump, thank you!
Merry Christmas to all! NEXT year will be our year. Two years ago on Christmas I was in the hospital scared-to-death because I went into pre-term labor at 29 weeks with Stella and Evy. Last year we were quarantined because they were preemies and it was RSV season. This year, well, this year you know about. NEXT year I will be like Clark W. Griswold and make our house visible from space with all of the Christmas lights. And then I will post a picture here of us all smiling around the tree. Just you wait!
A quote in Evy's hospital room from an Emily Dickinson poem is bolstering my spirit today:
Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all.
That perches in the soul,
And sings the tune without the words,
And never stops at all.
Thursday, December 24, 2009
Wednesday, December 23, 2009
Wednesday
Exciting night last night filled with 105 degree fever, ice packs, and a fan. Evy has a bacterial infection in her blood. Always a danger when you have a central line. Got her feeding tube put into her nose today. Tomorrow morning was going to be the latest our doctor was going to meet with the radiologist. Still waiting to hear something official.
Tuesday, December 22, 2009
Tuesday Update
Evy is in the hospital. She has a fever, cannot keep anything down, and is very lethargic. Fevers mean she will be in for at least a couple days. Last time it was eleven days in isolation, so hopefully this will not be the same. Regardless, we have been celebrating Christmas for the last few days --> opening the girls' gifts, throwing electric-bill-caution-to-the-wind by keeping the lights on our tree on all day, cranking the xmas tunes to get in the mood, you catch my drift. We even had a verifiable Snowpocalypse and got snowed in for the weekend.
I was a little gloomy earlier and then I was googling around about our protocol for fighting this nasty nastiness. I found this article about it and it made me smile. Enjoy! It might make you smile, too.
PS Unfortunately MGH in Boston had some scheduling issues and Evy's radiation has been pushed back until February. Of course they are saying it is mandatory that she come for an MRI up there two weeks prior... like we live a hop skip and a jump away... ok... putting the sarcasm away for now. Goodnight, sarcasm.
I was a little gloomy earlier and then I was googling around about our protocol for fighting this nasty nastiness. I found this article about it and it made me smile. Enjoy! It might make you smile, too.
PS Unfortunately MGH in Boston had some scheduling issues and Evy's radiation has been pushed back until February. Of course they are saying it is mandatory that she come for an MRI up there two weeks prior... like we live a hop skip and a jump away... ok... putting the sarcasm away for now. Goodnight, sarcasm.
Tuesday
No news on MRI... Dr. Horn will be meeting with the radiologist soon. Preliminary comments by radiologists make it sound like a good result (he said he could see the brain had no pressure from anything big) but they obviously have to thoroughly review the scan before telling us anything.
Brian and Evy didn't get home til around 9 pm last night. (Then of course the CVS pharmacy's computers were down, and then they couldn't fill her RX for two hours, so Brian left and got home just before 11 pm. Complaint over, CVS.) Today she couldn't eat anything due to nausea and mouth sores. She wouldn't even nurse, and that has never happened before. The nurse told us that the sores in her mouth can go from her mouth all the way through to her bottom. So basically this poor girl could have sores all through her body. She holds her mouth in a grimace position to alleviate pressure on one that is on her gum. So when we get the nausea under control she still cannot eat due to the sores. She barely cries because she is so weak, and she looks like Tom Hanks at the end of the movie Philadelphia. Seriously. Brian and Evy just left to go back to the doctor for an assessment. We assume she should be in the hospital. Hopefully she will get a feeding tube in soon so she will stop losing so much weight. She has lost 10% of her body weight so far.
Until next time,
Jill
Brian and Evy didn't get home til around 9 pm last night. (Then of course the CVS pharmacy's computers were down, and then they couldn't fill her RX for two hours, so Brian left and got home just before 11 pm. Complaint over, CVS.) Today she couldn't eat anything due to nausea and mouth sores. She wouldn't even nurse, and that has never happened before. The nurse told us that the sores in her mouth can go from her mouth all the way through to her bottom. So basically this poor girl could have sores all through her body. She holds her mouth in a grimace position to alleviate pressure on one that is on her gum. So when we get the nausea under control she still cannot eat due to the sores. She barely cries because she is so weak, and she looks like Tom Hanks at the end of the movie Philadelphia. Seriously. Brian and Evy just left to go back to the doctor for an assessment. We assume she should be in the hospital. Hopefully she will get a feeding tube in soon so she will stop losing so much weight. She has lost 10% of her body weight so far.
Until next time,
Jill
Friday, December 18, 2009
We're home!
Evy's chemo was done at 7:40 last night, and we pulled into our driveway at 9pm. We had some restful sleep in our own beds with no nurses coming to to take vitals or to adjust chemo.
On Monday she will be getting an MRI to see if there is regrowth of tumor or any new ones, and she will also be getting some outpatient chemo. But until then we are chillaxin' at home... hoping to get those white blood cell counts up a little by the time she travels on Monday into germ-land. Snow is in the forecast, and this Northern gal hopes her little Virginians can enjoy seeing some wintry-white together at home all weekend.
Life is good! Hug your children. Rejoice in the moment.
Hugs and kisses,
Jill
On Monday she will be getting an MRI to see if there is regrowth of tumor or any new ones, and she will also be getting some outpatient chemo. But until then we are chillaxin' at home... hoping to get those white blood cell counts up a little by the time she travels on Monday into germ-land. Snow is in the forecast, and this Northern gal hopes her little Virginians can enjoy seeing some wintry-white together at home all weekend.
Life is good! Hug your children. Rejoice in the moment.
Hugs and kisses,
Jill
Thursday, December 17, 2009
Santa!
Santa and his friends visited Evelyn this morning! She loved it. Here are some pics. (She was stunned at first, hence the jaw-drop, but she cried when Rudolph left!)
Wednesday, December 16, 2009
Wednesday
Evy is tolerating her chemo very well so far. We have had fun and have been having some good one-on-one time to work on her physical and speech therapy. Evy lost some words with her surgery. She was already behind verbally, but the surgery set her back a bit more. A tumor the size of a mango will do that to you! I spent time teaching her the word "milk" so that she could ask instead of saying, "eh, eh, eh!" After a day or so, Evy points and says "mih!" So sweet. The smile. Oh, you know that smile! She was so proud and so was I.
Today one of her physical therapists was here and I asked if she expects a full recovery of her arm and leg. She said that she doesn't expect that Evy's fine motor skills in her hand will come back. I hear her words, but I don't really believe them. I know some may say that I am in denial, but when people tell me things like that I just think, "but you don't really know my family." Because I imagine Evelyn as a sixteen year old running around with a lacrosse stick or dancing in a musical with Bob Fosse jazz hands. So there.
Evy has been sleeping very well for the hospital. She naps on me about twice a day and then we snuggle up in our hospital bed together at night like two little snug bugs in a rug.
We're expecting to leave here on Friday. Send extra strong vibes for no infection so that we do not land back in the hospital for the holiday and have time to plan for our departure for Boston at the beginning of January.
Today one of her physical therapists was here and I asked if she expects a full recovery of her arm and leg. She said that she doesn't expect that Evy's fine motor skills in her hand will come back. I hear her words, but I don't really believe them. I know some may say that I am in denial, but when people tell me things like that I just think, "but you don't really know my family." Because I imagine Evelyn as a sixteen year old running around with a lacrosse stick or dancing in a musical with Bob Fosse jazz hands. So there.
Evy has been sleeping very well for the hospital. She naps on me about twice a day and then we snuggle up in our hospital bed together at night like two little snug bugs in a rug.
We're expecting to leave here on Friday. Send extra strong vibes for no infection so that we do not land back in the hospital for the holiday and have time to plan for our departure for Boston at the beginning of January.
Monday, December 14, 2009
Chemo: Round 2
Here we go again!
Waiting for her IV chemo to begin. Got chemo via lumbar puncture this morning. The doctors and pharmacy take so long to get the actual chemo meds up here that I predict having to stay until Saturday instead of Friday again.
Evy just started eating solid food for the first time in about 2 weeks yesterday. I was so happy. Today I had a Chipotle burrito (yum) and she ate most of the guac. I am trying to stuff her before the nausea sets in again. She wouldn't take that last bite, but then I said, "pretend you and Stella are having an eating competition!" and she smiled and ate some more.
This morning Santa was at the clinic. It was her first rendez-vous with the man in red. He gave her a tea set and she has been obsessed with it ever since and even drank a bit of soy milk from her little teacup.
Getting her ready to go this morning was very sad. She had just two-and-a-half days at home with Stella and was just getting strong and back into her daily rhythm. Being sick and weak, she has not been up to a lot of physical therapy. She is not walking and she barely uses her arm. It is very difficult as her mother to see them strip down her strength and defenses, let her recover and build them back up, only to destroy them again with chemo. Evy figured out what I was up to very quickly this morning when she saw the suitcase and the bags. It just adds insult to injury when she cannot eat before her lumbar punctures (spinal taps). Add fog, windy country roads, and eventual commuter traffic and you have yourself a hilarious mental image of Jill keeping it together somehow!
I have been tested in my lifetime with challenges that many people have never had to bear, and I have always, always triumphed! We will triumph.
Waiting for her IV chemo to begin. Got chemo via lumbar puncture this morning. The doctors and pharmacy take so long to get the actual chemo meds up here that I predict having to stay until Saturday instead of Friday again.
Evy just started eating solid food for the first time in about 2 weeks yesterday. I was so happy. Today I had a Chipotle burrito (yum) and she ate most of the guac. I am trying to stuff her before the nausea sets in again. She wouldn't take that last bite, but then I said, "pretend you and Stella are having an eating competition!" and she smiled and ate some more.
This morning Santa was at the clinic. It was her first rendez-vous with the man in red. He gave her a tea set and she has been obsessed with it ever since and even drank a bit of soy milk from her little teacup.
Getting her ready to go this morning was very sad. She had just two-and-a-half days at home with Stella and was just getting strong and back into her daily rhythm. Being sick and weak, she has not been up to a lot of physical therapy. She is not walking and she barely uses her arm. It is very difficult as her mother to see them strip down her strength and defenses, let her recover and build them back up, only to destroy them again with chemo. Evy figured out what I was up to very quickly this morning when she saw the suitcase and the bags. It just adds insult to injury when she cannot eat before her lumbar punctures (spinal taps). Add fog, windy country roads, and eventual commuter traffic and you have yourself a hilarious mental image of Jill keeping it together somehow!
I have been tested in my lifetime with challenges that many people have never had to bear, and I have always, always triumphed! We will triumph.
Friday, December 11, 2009
Thursday, December 10, 2009
Thursday
Still in the hospital.... Day 10... it is wearing on us all. Evy is D-O-N-E with this hospital room! Her ANC is coming up so the doctors think maybe tomorrow will be discharge... then chemo will start on Monday, back in the hospital for one week. It looks like we will be spending a lot of time as in-patients, so keep asking your federal working friends about leave donations.
Tuesday, December 8, 2009
Putting this out there...
...anyone know of anyone with an old double or queen sized bed they're looking to get rid of? We are in the market for one for helpers to sleep on.
Or you could even help me by trolling the Fredericksburg Craig's List to find a good deal on one that can be delivered!
ETA: Bed found! Muchos gracias!
Or you could even help me by trolling the Fredericksburg Craig's List to find a good deal on one that can be delivered!
ETA: Bed found! Muchos gracias!
Tuesday
Still here... a fever overnight and still zero ANC. Brian is home this week to take care of Stella (if anyone knows of anyone in the area who doesn't have kids who would be willing to watch Stella once in a while when we don't have help, it would be great... we can't put her with any kids so that she won't get sick and infect Evelyn...) So Brian and I will switch again this afternoon and I will hang with Miss Stella at home for a day or so and he will chill with Evy-Beth.
It's been one week! It's like a super-cool anniversary... but not. LOL
It's been one week! It's like a super-cool anniversary... but not. LOL
Sunday, December 6, 2009
Sunday
Still in the hospital.... Brian and I switched for a night last night and I got to spend some time with Stella and Grammy Pammy. It was beyond nice. Evy's fever has been down, but so are her white blood cell levels. They are thinking it'll be safe for her to go home by mid-week. Then we are due for another week-long chemo a starting a week from tomorrow. I am thinking I should just have the mail forwarded here!
Today I gave Misha to his new family and Evy's hair started to fall out.
Today I gave Misha to his new family and Evy's hair started to fall out.
Friday, December 4, 2009
Friday
Finally found a video that Evy will watch. Click here to view.
ANC still at zero. Fever gone for now.
ANC still at zero. Fever gone for now.
Thursday, December 3, 2009
Still here!
Evy's fevers have come and gone (and come and gone.) She has been nauseous and lethargic. In order to be released she will have to have had no fever for 24 hours, no infection in her blood for 48 (this has tested negative our whole stay,) and her ANC (white blood cell counts) must be high enough to fight off infection. Yesterday her ANC was very low; today her ANC is non-existent. Yes, zero. So it looks like we will be here for a bit longer. I asked one of the doctors if we should just expect to be in the hospital between every round of chemo (which occur every three weeks) and he said yes, and that we should just brace ourselves for it to happen every time and then be delighted when it doesn't happen, perhaps once. In fact, they expected this sort of thing to happen and this occurance should not delay her next round of chemo because they have planned for it in her roadmap.
It is so sad to see Evelyn feeling so sick. Last week she (mostly) sailed through chemo, and now it seems that is is catching up with her. I always knew that cancer was a nasty disease, but now I am unfortunately witnessing it firsthand. It is nasty and frightening, and, sadly, happening to my daughter. She has RSV but with none of the respiratory issues. No mucus, no breathing problems. I think most of this is recovery from chemo.
She is too sick to eat any solid food. Still just nursing. I assume she will get a feeding tube in her nose at some point in the future as she has lost two pounds so far. She is tortured by the fact that she can't go out into the hallway. We are on the floor with all of the sick kids and there is no way she would be able to poke around like she can in Hem/Onc.
Her physical therapy is slower going when she feels so sick. I want so badly for her to be able to walk and play with Stella! Hopefully soon.
For now we are listening to some Pandora radio by day, and this website by night (I forgot our white noise machine!) We have had the sweetest nurses who just love Evy. We have a corner of our room set up with toys, puzzles, and books, but mostly Evy nurses and naps while mama trolls the internet. Some things never change! (:
It is so sad to see Evelyn feeling so sick. Last week she (mostly) sailed through chemo, and now it seems that is is catching up with her. I always knew that cancer was a nasty disease, but now I am unfortunately witnessing it firsthand. It is nasty and frightening, and, sadly, happening to my daughter. She has RSV but with none of the respiratory issues. No mucus, no breathing problems. I think most of this is recovery from chemo.
She is too sick to eat any solid food. Still just nursing. I assume she will get a feeding tube in her nose at some point in the future as she has lost two pounds so far. She is tortured by the fact that she can't go out into the hallway. We are on the floor with all of the sick kids and there is no way she would be able to poke around like she can in Hem/Onc.
Her physical therapy is slower going when she feels so sick. I want so badly for her to be able to walk and play with Stella! Hopefully soon.
For now we are listening to some Pandora radio by day, and this website by night (I forgot our white noise machine!) We have had the sweetest nurses who just love Evy. We have a corner of our room set up with toys, puzzles, and books, but mostly Evy nurses and naps while mama trolls the internet. Some things never change! (:
Wednesday, December 2, 2009
Back in the hospital
Brian checked Evy's temp at 10pm last night and she had a fever. I drove her back to the hospital. She has RSV. It will always be a worry that she will get sick when she is neutropenic from her chemo, but Brian and I have also witnessed two sick kids in the clinic on Monday and Tuesday who were not wearing masks. Don't worry, I will raise hell about that. The last place we should worry about people not understanding why it is so important to keep kids with cancer germ-free is the cancer clinic. We will be in the hospital for at least 2 days, as far as I can tell. If you're in the area, let me know if you can make a run to Sunflower Vegetarian for me. I didn't have a chance to pack food. ETA: Food has been delivered by some "imaginary friends." THANKS! (:
Tuesday, December 1, 2009
Tuesday
Evy had a sicky day from the chemo. Stayed all day again because she needed a blood transfusion. Her immune system is very much wiped out. Due to go back again Friday unless she has a temperature or any signs of sickness before then.
Think we found a new home for Misha... will know Sunday for sure when they meet him. Sad to see the girls' "big brother" go, but we knew we had to let him go to a better home for him.
Think we found a new home for Misha... will know Sunday for sure when they meet him. Sad to see the girls' "big brother" go, but we knew we had to let him go to a better home for him.
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