Another round done- five more to go! Evy is in very good spirits, in fact her latest thing is walking around the house saying, "happy, happy, happy!"
She was happy to see her "Uncle" Billy yesterday, who stopped by to see the girls and weather-proof our doors just to be nice. (Billy Mock of Olde Towne Window and Door helped us with our house issues during chemo and was beyond generous to us. He became a member of our family in the process... if any of you local folk need windows, doors, siding, throw your support to this man's business! http://oldetownewd.com/) Billy had met our girls last fall when we replaced our windows and became smitten with them just before Evy was diagnosed. So nice to have someone like him around when we have been going through all of this!
We hope to continue on our lucky streak fighting neutropenic fevers (or shall I say militant mama shaving years off her life from stress of fighting invisible germs.) Haven't been in-patient since Boston... can we make it five more rounds?? Hope so!
Friday, July 30, 2010
Tuesday, July 27, 2010
7.27.10
Evy started a new round of chemo yesterday. This round is five days long. Her nausea began yesterday afternoon. As a parent, you feel so awful watching her struggle to feel better after a round, only to do chemo again so soon. I will be very happy when we have completed our 17th round and we will be all done. I am ready for this to be over. And I know Evy is, too.
Cancer sucks. It changes people forever. It isolates families from the rest of the non-cancer world. It makes people not want to talk to you because they don't know what to say/don't want to deal with it, and yet it makes people at the grocery store stare at you as though your family is a train wreck that they just cannot help but stare at. I am generally positive, and certainly in front of my girls, but this sucks beyond normal suckage. I try to only write when I am feeling like giving happy accounts of what is going on, but as you can see then I don't update the blog very often! So here I am being real.
We are also dealing with the aftermath of a stroke. Last week Evy got her horsie braces for each foot. She loves them and they definitely help her walk better than her old braces. We also had a constraint cast made for her good arm, so that we can get her to use her right arm, which was affected by the stroke. She has been doing a great job moving her arm, but she still has never voluntarily moved or used her hand since her stoke in October.
So, Evy keeps on truckin', and so do we. Week 36. Yay.
Cancer sucks. It changes people forever. It isolates families from the rest of the non-cancer world. It makes people not want to talk to you because they don't know what to say/don't want to deal with it, and yet it makes people at the grocery store stare at you as though your family is a train wreck that they just cannot help but stare at. I am generally positive, and certainly in front of my girls, but this sucks beyond normal suckage. I try to only write when I am feeling like giving happy accounts of what is going on, but as you can see then I don't update the blog very often! So here I am being real.
We are also dealing with the aftermath of a stroke. Last week Evy got her horsie braces for each foot. She loves them and they definitely help her walk better than her old braces. We also had a constraint cast made for her good arm, so that we can get her to use her right arm, which was affected by the stroke. She has been doing a great job moving her arm, but she still has never voluntarily moved or used her hand since her stoke in October.
So, Evy keeps on truckin', and so do we. Week 36. Yay.
Monday, July 19, 2010
7.19.10
Evy's counts have been low, but we have been fever free. She has not gone a day without nausea since chemo, which was 11 days ago. We will go to the Clinic tomorrow for a count check and hopefully they will be up so we can do fun stuff before we completely destroy her immune system again next week. We will also be getting a constraint cast made for Evy on Wednesday and picking up her new leg braces on Thursday.
On Saturday Brian and I got away just the two of us for the first time since February. We hired a babysitter! For the first time ever, we left the girls with someone other than family or very close friend. It was great! The girls love her, and Evy can already say her name. Brian and I went to the Tiffany exhibit in Richmond and had lunch out. It is something we should have done sooner. Anything that can be done to avoid caretaker burnout is essential for families like ours. So, we will plan on doing it more often!!
On Saturday Brian and I got away just the two of us for the first time since February. We hired a babysitter! For the first time ever, we left the girls with someone other than family or very close friend. It was great! The girls love her, and Evy can already say her name. Brian and I went to the Tiffany exhibit in Richmond and had lunch out. It is something we should have done sooner. Anything that can be done to avoid caretaker burnout is essential for families like ours. So, we will plan on doing it more often!!
Tuesday, July 13, 2010
7.13.10
MRI is ALL CLEAR! No tumors, small line in tumor bed (probably a scar) we saw previously is shrinking in size.
Let's just say I found a secret way to get faster readings on the MRIs, since previously we had to wait for days... I will not reveal my sources! Hee hee.
The only thing they did see were some sinus issues. Hoping they are allergies and not an infection, which would land us in the hospital soon as her counts are dropping as I type.
Wooohooo!
Let's just say I found a secret way to get faster readings on the MRIs, since previously we had to wait for days... I will not reveal my sources! Hee hee.
The only thing they did see were some sinus issues. Hoping they are allergies and not an infection, which would land us in the hospital soon as her counts are dropping as I type.
Wooohooo!
Monday, July 12, 2010
7.12.10
Gearing up for an MRI tomorrow. Luckily I thought it was going to be on the 22nd for a while, so when Brian told me on Friday that it was actually on the 13th, I had less time for scanxiety. Send your positive thoughts, prayers, good energy, whatever it is you do, to our little girl Evy tomorrow morning. No tumors, please!
Evy is doing well... a little nausea here and there but altogether normal and happy.
We got accepted into a cutting-edge Constraint Induced Therapy program for the spring. We are slated to travel to Birmingham, Alabama in March to do constraint therapy with the man who invented it. Evy's left arm will be put into a cast for three weeks so that she will be forced to use her right arm, which was affected by a stroke. I am so happy. I have been dreaming about providing this for Evy since I first heard about it in Boston.
Big smiles!
Evy is doing well... a little nausea here and there but altogether normal and happy.
We got accepted into a cutting-edge Constraint Induced Therapy program for the spring. We are slated to travel to Birmingham, Alabama in March to do constraint therapy with the man who invented it. Evy's left arm will be put into a cast for three weeks so that she will be forced to use her right arm, which was affected by a stroke. I am so happy. I have been dreaming about providing this for Evy since I first heard about it in Boston.
Big smiles!
Friday, July 9, 2010
7-9-10
[dada posting]
So, as I'm sure you've all heard, Evy signed with the Miami Heat. Oh, wait, that was LeBron.
Days 2 and 3 of this round of chemo went much more smoothly than day 1, and Evy did great as always. Sure, she did pee once during a diaper change leaving us down one sock, but that's easy! Other than that, we mostly played and hung out with some of the other kids. Evy loves observing the older kids, and spends a lot of time running through the nurses' station to "check up on them" as we say. They keep telling her they're going to make her an honorary nurse! This week she was feeling especially friendly, and kept running in and giving hugs, trying to wrap herself around the nurses' legs, and sit on their laps. It must be truly rewarding to work with all these kids, and the nurses all go above and beyond to make the kids healthy and happy.
So far, Evy has had very little nausea since day 1. We're trying out a new anti-nausea med, so we'll see if it works a little better for her. Next week will be the tough week as her counts drop and she feels sicker. But, no one can take on that challenge like her! So, for now, we'll just try and enjoy the weekend, and head back up for a check-up on Monday. Here's a parting anecdote for y'all:
Last night, as I was helping Stella fall asleep, I happened not to have a shirt on (ladies, you're welcome in advance for that mental image). She just looked at me a bit surprised with a smile on her face and said:
"Dada!"
"Shirt!'
"Nipples!"
"Boobies!"
Thanks Stella. I retorted with: "leave me alone! I can't get to the gym! My daughter has brain cancer!" (I use that excuse for everything!) Guess I'll do a bit of shopping for a bro/manzierre this weekend.
Happy Friday night, folks.
So, as I'm sure you've all heard, Evy signed with the Miami Heat. Oh, wait, that was LeBron.
Days 2 and 3 of this round of chemo went much more smoothly than day 1, and Evy did great as always. Sure, she did pee once during a diaper change leaving us down one sock, but that's easy! Other than that, we mostly played and hung out with some of the other kids. Evy loves observing the older kids, and spends a lot of time running through the nurses' station to "check up on them" as we say. They keep telling her they're going to make her an honorary nurse! This week she was feeling especially friendly, and kept running in and giving hugs, trying to wrap herself around the nurses' legs, and sit on their laps. It must be truly rewarding to work with all these kids, and the nurses all go above and beyond to make the kids healthy and happy.
So far, Evy has had very little nausea since day 1. We're trying out a new anti-nausea med, so we'll see if it works a little better for her. Next week will be the tough week as her counts drop and she feels sicker. But, no one can take on that challenge like her! So, for now, we'll just try and enjoy the weekend, and head back up for a check-up on Monday. Here's a parting anecdote for y'all:
Last night, as I was helping Stella fall asleep, I happened not to have a shirt on (ladies, you're welcome in advance for that mental image). She just looked at me a bit surprised with a smile on her face and said:
"Dada!"
"Shirt!'
"Nipples!"
"Boobies!"
Thanks Stella. I retorted with: "leave me alone! I can't get to the gym! My daughter has brain cancer!" (I use that excuse for everything!) Guess I'll do a bit of shopping for a bro/manzierre this weekend.
Happy Friday night, folks.
Tuesday, July 6, 2010
7.6.10
Week 33 begins...
[dada]
So today was the start of a new chemo round, which started bright and early with a spinal tap. These always hit Evy hard with nausea, and she also has to go without food for 8 hours before, and lie flat for 30 minutes after, which she does not enjoy. Today's started off smoothly, but the aftermath was as usual. Evy was nauseous for several hours afterward, and needed the combo of 3 different anti-nausea meds to stop her from throwing up. It was pretty rough, especially because she hadn't been eating, and so was just retching and throwing up bile. Here's a fun anecdote to give you a glimpse into our lives:
So, the clinic has these little barf bags, that are long and skinny and blue plastic. When they're at home, Stella likes to wear them like boots! How many kids get that experience? Whenever we're at the clinic, we have a bag at hand, since Evy doesn't really give much of a heads-up that she's feeling sick. Today, in between rounds of vomiting, Evy decided to mix things up and have some explosive diarrhea. It was out of her pants and up her back. I gingerly carried her to the bathroom for a diaper and outfit change. I didn't have anything else, so I crammed her dirty clothes into a barf bag. It was actually a pretty good fit. Just at that moment, she started throwing up again, so I grabbed...the barf bag, of course. So there she is, in the bathroom, mostly naked, shivering, vomiting into a little bag filled with her crap-covered clothes. I fought my instinct to burn the clothes there and then.
After that, the day smoothed out a bit. But the drugs did make her a little dopey, and at one point she took a header and scraped her head against the corner of a cabinet. It was pretty ugly looking, but she was back in action in no time. She was especially cute with the nurses today, running into their station and giving hugs to everyone. They love her, but how could they not? Her favorite thing during the day is that when it's time to test her urine, she gets to run out of the bathroom to the nurse's station, waving the specimen jar with her diaper pad over her head, to the cheers of the nurses who love getting her "gift". Again, most kids miss out on things like this. I feel sorry for those people.
The day finished with a much needed nap on the way home (once we got the car cooled down somewhat), and a nice early bedtime. We're back at the clinic for the next two days, but they will hopefully go a little better than today...
[dada]
So today was the start of a new chemo round, which started bright and early with a spinal tap. These always hit Evy hard with nausea, and she also has to go without food for 8 hours before, and lie flat for 30 minutes after, which she does not enjoy. Today's started off smoothly, but the aftermath was as usual. Evy was nauseous for several hours afterward, and needed the combo of 3 different anti-nausea meds to stop her from throwing up. It was pretty rough, especially because she hadn't been eating, and so was just retching and throwing up bile. Here's a fun anecdote to give you a glimpse into our lives:
So, the clinic has these little barf bags, that are long and skinny and blue plastic. When they're at home, Stella likes to wear them like boots! How many kids get that experience? Whenever we're at the clinic, we have a bag at hand, since Evy doesn't really give much of a heads-up that she's feeling sick. Today, in between rounds of vomiting, Evy decided to mix things up and have some explosive diarrhea. It was out of her pants and up her back. I gingerly carried her to the bathroom for a diaper and outfit change. I didn't have anything else, so I crammed her dirty clothes into a barf bag. It was actually a pretty good fit. Just at that moment, she started throwing up again, so I grabbed...the barf bag, of course. So there she is, in the bathroom, mostly naked, shivering, vomiting into a little bag filled with her crap-covered clothes. I fought my instinct to burn the clothes there and then.
After that, the day smoothed out a bit. But the drugs did make her a little dopey, and at one point she took a header and scraped her head against the corner of a cabinet. It was pretty ugly looking, but she was back in action in no time. She was especially cute with the nurses today, running into their station and giving hugs to everyone. They love her, but how could they not? Her favorite thing during the day is that when it's time to test her urine, she gets to run out of the bathroom to the nurse's station, waving the specimen jar with her diaper pad over her head, to the cheers of the nurses who love getting her "gift". Again, most kids miss out on things like this. I feel sorry for those people.
The day finished with a much needed nap on the way home (once we got the car cooled down somewhat), and a nice early bedtime. We're back at the clinic for the next two days, but they will hopefully go a little better than today...
Monday, July 5, 2010
7.5.10
Another round of chemo to begin tomorrow. Wish us luck. I always get a bit glum before a chemo round begins, especially when it involves a lumbar puncture and putting chemo directly into her spine and brain to kick off the process. It brings on the sickness early in the game and she has to have anesthesia. She will be having her lumbar puncture tomorrow morning followed by three days of chemo. When I put her down to sleep for the night I feel so bad. She doesn't even know what tomorrow will bring. Chemo sucks. Hopefully only twenty more weeks of it, and then that will be that.
Saturday, July 3, 2010
7.3.10
Happy July... one month closer to the end of treatment.
This week went well with all of our "play dates." I love how if you just spin PT, OT, and speech as a play date, the girls jump into the car excited to go play with toys. We also got Evy fitted for two new leg braces, one for each leg. Her knee was bending back way too much, so hopefully this will help correct that problem. We chose horses as the decorative part of the main brace this time (the girls love horses since we pass so many near our home.) Evy is very excited about her "horsie brace."
As for speech, Evy is right where she should be receptively (understands everything we say) but has some delays expressively. We knew all of this, but I just wanted to check in with a pro. Evy is talking more and more, and at this point has a much larger vocabulary than she did pre-surgery. So she went from talking normally, to not really talking at all after brain surgery, to being better than ever before in the past 8 months. Stella is a little expressively delayed as well, and if we need to peg it on something, we can peg it on prematurity (the girls were born at 30 weeks.) So I'd say Evy is doing a great job.
Now we have a three day weekend with beautiful weather and high counts to enjoy before our next round of chemo begins on Tuesday.
This week went well with all of our "play dates." I love how if you just spin PT, OT, and speech as a play date, the girls jump into the car excited to go play with toys. We also got Evy fitted for two new leg braces, one for each leg. Her knee was bending back way too much, so hopefully this will help correct that problem. We chose horses as the decorative part of the main brace this time (the girls love horses since we pass so many near our home.) Evy is very excited about her "horsie brace."
As for speech, Evy is right where she should be receptively (understands everything we say) but has some delays expressively. We knew all of this, but I just wanted to check in with a pro. Evy is talking more and more, and at this point has a much larger vocabulary than she did pre-surgery. So she went from talking normally, to not really talking at all after brain surgery, to being better than ever before in the past 8 months. Stella is a little expressively delayed as well, and if we need to peg it on something, we can peg it on prematurity (the girls were born at 30 weeks.) So I'd say Evy is doing a great job.
Now we have a three day weekend with beautiful weather and high counts to enjoy before our next round of chemo begins on Tuesday.
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