Feeding tube out!
Evy is munching away!
Feeling great and having lots of fun. We get to go to stores whenever she wants!
Week 53 tests will be spread over the next 2 weeks, but we consider ourselves done already, and the sense of relief is priceless.
Changing the "my daughter has cancer" to "my daughter had cancer" feels amazing.
Happy Thanksgiving.
Wednesday, November 24, 2010
Thursday, November 18, 2010
11.18.10
Moving through week 52- counts bottoming out for the last time. Evy is doing incredibly well. We left the one chemo drug out of this round because of our concerns for her heart. She hasn't been nauseous at all since the first day of chemo, last week. We have started pulling back on her tube feedings. Basically just feeding her through the night and cutting out her two daytime tube feedings altogether. Today I felt like a short-order cook- the girl was demanding so much food. I couldn't be happier. Three weeks ago she would eat half of a cheerio at a time. Today she took all of her meds by mouth, chewed her chewable vitamin for the first time in over a year (and even asked for more just like Stella does), helped me prepare squash and hated that it took so long in the oven, had three different dinner entrees by 3 pm, and enjoyed an ice cream sundae. Then she had dinner when Brian got home. Then she asked for animal crackers and was wolfing them down right before bedtime... and then just as I was about to take her up she begged for hummus. Then she ate forkfuls of hummus straight out of the container. YAY!
We'll see how her weight is tomorrow at the clinic where she will get platelets and hemoglobin.
I also have my spunky girl back. We'd see glimpses of her, especially at the very end of a chemo round, but then she'd fade away again with the sickness of chemo. I am flashing back to what Evy was like before cancer. She can scare the crap out of Stella with just one arm. It's insane and I have to fight back smiles and tears of joy when I have to scold her for beating up on her sister. It's usually Stella being the tough one! It's a whole new ballgame in twin-land.
And then what makes me the happiest- she has been letting me put her cast on her good arm so we can really work "rightie". We put her cast on and tie her arm to her side with a scarf so she can only use rightie. She is making so many strides with that arm and I just know the hand is next. I have been reading up on Dr. Taub and constraint induced therapy so I can make up my own exercises in addition to the PT/OT we already do. Today we were working on one exercise when she saw a nickel on the floor. She bent over and tried to pick it up with rightie and her fingers moved like they were going to pick it up. I didn't care how dirty that nickel could be- I just cheered her on. She tried and tried, but isn't there yet... but she has that spark in her eye. And I know that spark! And I love it.
Go Evy, go!
We'll see how her weight is tomorrow at the clinic where she will get platelets and hemoglobin.
I also have my spunky girl back. We'd see glimpses of her, especially at the very end of a chemo round, but then she'd fade away again with the sickness of chemo. I am flashing back to what Evy was like before cancer. She can scare the crap out of Stella with just one arm. It's insane and I have to fight back smiles and tears of joy when I have to scold her for beating up on her sister. It's usually Stella being the tough one! It's a whole new ballgame in twin-land.
And then what makes me the happiest- she has been letting me put her cast on her good arm so we can really work "rightie". We put her cast on and tie her arm to her side with a scarf so she can only use rightie. She is making so many strides with that arm and I just know the hand is next. I have been reading up on Dr. Taub and constraint induced therapy so I can make up my own exercises in addition to the PT/OT we already do. Today we were working on one exercise when she saw a nickel on the floor. She bent over and tried to pick it up with rightie and her fingers moved like they were going to pick it up. I didn't care how dirty that nickel could be- I just cheered her on. She tried and tried, but isn't there yet... but she has that spark in her eye. And I know that spark! And I love it.
Go Evy, go!
Thursday, November 11, 2010
11.11.10-No Mo' Chemo!
Today, Evy received her last dose of chemo! After 51 weeks, and 17 rounds, we are greatly looking forward to a more "normal" way of life. We all went to the clinic today to celebrate. The whole staff was great and kept congratulating us all. At the end, the nurses sang Evy an end of chemo song and had some presents for the girls. And Evy kept saying "All done...chemo!". Of course, she doesn't completely get what chemo is, but she knows what the medicine does to her and how much of a hassle it is to always be traveling for it, and she's definitely excited not to have to deal with that anymore.
We'll still be going for regular visits, especially in the next couple weeks as we monitor her counts. But we won't be dealing with five days in a row of high dose chemo. We feel very lucky as we know not everyone has such a good outcome as we do, and we're very thankful for the amazing care we've received. And, we're so proud of Evy and the amazing courage and strength she's shown through this whole ordeal. She's been an inspiration to us all, smiling even when her body is being beaten down by powerful medications.
I'll be sure to post some pictures, and maybe a video or two if I can figure it out, in the next night or two.
Thank you all for your support through this past year. It's been a wild ride, and we couldn't have made it without your love and help!
We'll still be going for regular visits, especially in the next couple weeks as we monitor her counts. But we won't be dealing with five days in a row of high dose chemo. We feel very lucky as we know not everyone has such a good outcome as we do, and we're very thankful for the amazing care we've received. And, we're so proud of Evy and the amazing courage and strength she's shown through this whole ordeal. She's been an inspiration to us all, smiling even when her body is being beaten down by powerful medications.
I'll be sure to post some pictures, and maybe a video or two if I can figure it out, in the next night or two.
Thank you all for your support through this past year. It's been a wild ride, and we couldn't have made it without your love and help!
Monday, November 8, 2010
11.8.10
[DADA POSTING]
First and foremost, a huge thank you to everyone who made our fundraiser last night such a great success. We had a great time, and got to meet a lot of new friends, some of whom we've only known virtually up until last night. We even met some other families going through a similar situation, reminding us just how many of our friends and neighbors will be affected by cancer in one way or another. Amy's is a great place, and they also do a lot of charity/community-service type stuff there, so we can't wait to start going there after treatment. And a big thank you to Andie, who was a natural as a fundraiser (and emcee). She basically went to every business in FXBG and talked them into donating to the fundraiser. It's like she's in the mob, except she was doing good instead of offering them "protection." All of the proceeds will really help make Evy's treatment down in Alabama happen!
Today was the first day of 51, AKA the last round of chemo! We can't believe round 17 is finally here. Evy needed her last spinal tap, and since the semi-sedation meds in the clinic had been making her really sick, we decided to expand the cycle by a day and have her tap done at the hospital under full sedation. We stopped at the clinic for some count checks and to say hi (especially to the folks there who were Brave and Shaved. They look great!), then we were off to the hospital. Of course, some waiting was involved, but the area where they do sedation has plenty of toys and the nurses there are great. It ended up starting only an hour or so late, which pretty much qualifies as "on time" in the medical world. The procedure was pretty quick, and then I just had to annoy Evy to wake her up so she could have a cookie and some juice, which she had been begging me for beforehand, since she couldn't eat. At first, she was asking me for a banana, and I told her I would get her one. Then, we were sitting in the waiting room, and some child circuit in her brain clicked, and she asked me "banana?...COOKIE!". It was as though she remembered that she can pretty much ask for anything during these type of days and I'll try and get it for her. There was a messy throw up on the way home, but she felt better when we got here, and was excited to talk about Santa (who we'll be seeing several times in the next month or so) and to show off her new Christmas book that we bought today.
Tomorrow through Thursday we have our final three days of chemo! I know a lot of you are wondering, so here's what will happen after that. She'll have her normal cycle of counts dropping, maybe a platelet or blood transfusion, and then her body will recover. Then, they'll be giving her every test they have, not only MRI's of her brain, but full scans of her spine and chest, checking her kidneys, her hearing, her eyes, her heart again, etc. [As Jill had mentioned, the last Echo/EKG went better than the previous, and her heart functions were normal except for some slight enlargement. Hopefully, as she gets bigger, she will "grow into" her heart. It definitely put us at ease. And we will be holding her last dose of Doxo, just to be on the safe side].
Assuming all her test look good, her line will be removed, and then we'll move to a schedule of clinic visits about once a month to keep an eye on her immune system, and make sure there are no lingering effects from chemo. She will have MRI's every 3 months at first, and those will slowly spread out to longer intervals. Our biggest focus at the moment is getting her used to eating again, so that she can lose her feeding tube. This is a bit up and down, but she has been very enthusiastic about trying different stuff out. It also might be a matter of us backing off on her feeds, just to get her nice and hungry. But we'll worry more about that once chemo isn't making her nauseous.
The prognosis at this point is very good, and we didn't dare hope for such an outcome one year ago.
I'm posting some pics below, mainly of the girls looking adorable in their Halloween outfits. Hope you enjoy, and thanks again to everyone who helped out last night!
First and foremost, a huge thank you to everyone who made our fundraiser last night such a great success. We had a great time, and got to meet a lot of new friends, some of whom we've only known virtually up until last night. We even met some other families going through a similar situation, reminding us just how many of our friends and neighbors will be affected by cancer in one way or another. Amy's is a great place, and they also do a lot of charity/community-service type stuff there, so we can't wait to start going there after treatment. And a big thank you to Andie, who was a natural as a fundraiser (and emcee). She basically went to every business in FXBG and talked them into donating to the fundraiser. It's like she's in the mob, except she was doing good instead of offering them "protection." All of the proceeds will really help make Evy's treatment down in Alabama happen!
Today was the first day of 51, AKA the last round of chemo! We can't believe round 17 is finally here. Evy needed her last spinal tap, and since the semi-sedation meds in the clinic had been making her really sick, we decided to expand the cycle by a day and have her tap done at the hospital under full sedation. We stopped at the clinic for some count checks and to say hi (especially to the folks there who were Brave and Shaved. They look great!), then we were off to the hospital. Of course, some waiting was involved, but the area where they do sedation has plenty of toys and the nurses there are great. It ended up starting only an hour or so late, which pretty much qualifies as "on time" in the medical world. The procedure was pretty quick, and then I just had to annoy Evy to wake her up so she could have a cookie and some juice, which she had been begging me for beforehand, since she couldn't eat. At first, she was asking me for a banana, and I told her I would get her one. Then, we were sitting in the waiting room, and some child circuit in her brain clicked, and she asked me "banana?...COOKIE!". It was as though she remembered that she can pretty much ask for anything during these type of days and I'll try and get it for her. There was a messy throw up on the way home, but she felt better when we got here, and was excited to talk about Santa (who we'll be seeing several times in the next month or so) and to show off her new Christmas book that we bought today.
Tomorrow through Thursday we have our final three days of chemo! I know a lot of you are wondering, so here's what will happen after that. She'll have her normal cycle of counts dropping, maybe a platelet or blood transfusion, and then her body will recover. Then, they'll be giving her every test they have, not only MRI's of her brain, but full scans of her spine and chest, checking her kidneys, her hearing, her eyes, her heart again, etc. [As Jill had mentioned, the last Echo/EKG went better than the previous, and her heart functions were normal except for some slight enlargement. Hopefully, as she gets bigger, she will "grow into" her heart. It definitely put us at ease. And we will be holding her last dose of Doxo, just to be on the safe side].
Assuming all her test look good, her line will be removed, and then we'll move to a schedule of clinic visits about once a month to keep an eye on her immune system, and make sure there are no lingering effects from chemo. She will have MRI's every 3 months at first, and those will slowly spread out to longer intervals. Our biggest focus at the moment is getting her used to eating again, so that she can lose her feeding tube. This is a bit up and down, but she has been very enthusiastic about trying different stuff out. It also might be a matter of us backing off on her feeds, just to get her nice and hungry. But we'll worry more about that once chemo isn't making her nauseous.
The prognosis at this point is very good, and we didn't dare hope for such an outcome one year ago.
I'm posting some pics below, mainly of the girls looking adorable in their Halloween outfits. Hope you enjoy, and thanks again to everyone who helped out last night!
11.8.10 Pics
Showing off her wings.
Run for the trees!
Evy putting spells on the pumpkins.
Stella helping Evy fix her crown.
Thursday, November 4, 2010
Tuesday, November 2, 2010
11.2.10
[DADA POSTING]
A couple of updates, and then some pictures below of our trip to the mountain house (finally...).
Today, Evy had a clinic visit to get some blood, as a low hemoglobin count can make the echo/EKG she had over the weekend less accurate. On Thursday she'll have another set of tests to see if there are still any anomalies with her heart. Her doctor checked her out today and didn't notice any problems with her breathing, heart sounds, etc., so we'll see if there's any reason to worry or not. Either way, we'll probably skip her last doxo dose, just to play it safe.
Other than that, Evy is feeling good, and she gets excited now when we talk about no more chemo (or teamo as she pronounces it) and her growing her hair back. I can't even imagine what she'll look like with a full head of hair.
Speaking of hair, I wanted to put up a link for some friends of ours from the clinic who will be participating in Be Brave and Shave this weekend. This is a charity where people raise money by getting sponsors for getting their heads shaved. Last year, our primary doctor, Dr. Horn, did it, and this year it will be Gretchen (art therapist extraordinaire slash Evy's clinic mama, who just cut 10" of hair off for Locks of Love), Kimber (a nurse at the clinic), and Jae and Nicole (who run the front desk). Here's the link to their fundraising page (I know that with our fundraisers and other charitable stuff everyone has already given so much, but even a few dollars makes a difference when it's all pooled together), and they'll be posting some pics soon:
Three Dames and a Dude
And here's the main page for the charity, with more info, shaving pics, etc.:
Be Brave and Shave
We love to see people getting involved like this! I was thinking about participating, but I have a very lumpy skull.
A couple of updates, and then some pictures below of our trip to the mountain house (finally...).
Today, Evy had a clinic visit to get some blood, as a low hemoglobin count can make the echo/EKG she had over the weekend less accurate. On Thursday she'll have another set of tests to see if there are still any anomalies with her heart. Her doctor checked her out today and didn't notice any problems with her breathing, heart sounds, etc., so we'll see if there's any reason to worry or not. Either way, we'll probably skip her last doxo dose, just to play it safe.
Other than that, Evy is feeling good, and she gets excited now when we talk about no more chemo (or teamo as she pronounces it) and her growing her hair back. I can't even imagine what she'll look like with a full head of hair.
Speaking of hair, I wanted to put up a link for some friends of ours from the clinic who will be participating in Be Brave and Shave this weekend. This is a charity where people raise money by getting sponsors for getting their heads shaved. Last year, our primary doctor, Dr. Horn, did it, and this year it will be Gretchen (art therapist extraordinaire slash Evy's clinic mama, who just cut 10" of hair off for Locks of Love), Kimber (a nurse at the clinic), and Jae and Nicole (who run the front desk). Here's the link to their fundraising page (I know that with our fundraisers and other charitable stuff everyone has already given so much, but even a few dollars makes a difference when it's all pooled together), and they'll be posting some pics soon:
Three Dames and a Dude
And here's the main page for the charity, with more info, shaving pics, etc.:
Be Brave and Shave
We love to see people getting involved like this! I was thinking about participating, but I have a very lumpy skull.
11.2.10 Pics
The amazing view from our house.
Evy chillin' on the deck.
Stella kept putting her feet on Evy's seat, which was really bugging her...
...and the result
11.2.10 Pics II
Stella on the shores of Deep Creek Lake.
A very excited Evy at DCL. Especially cute when she wears her food backpack.
Mama and the girls.
A lovely sunset on the deck.
Evy looking cool.
11.2.10 Pics III
Evy and Mama on their mighty steed. I think this one is Superfly (the other was Trusty Justy). After about 10 minutes, Evy gave me her "all done", but made it through the whole ride. We just had to swap kids halfway through...
Stella and Mama. Stella was a little stunned and held on tight.
The girls, cruising the streets of the big city (Oakland, MD, pop ~2000) after we hit a farmers market that had amazingly cheap produce
The girls on the state's largest fire place, or some such thing. The rest of the building has long since burned down, but the hearth remains.
It's really big.
11.2.10 Pics IV
These are from the final day. The girls were obsessed with going on a boat, so we went on the paddle boats at the ski mountain. I contrast to most of the week, it was a cold, blustery day. The pond was angry, my friends, and it took all our paddling might to keep our feathered friends on course. They loved the "duckie" and "white one" (swan), and still talk about it.
And here's of Stella showing her twinly camaraderie, rockin a Play-D'oh tubie.
And here's of Stella showing her twinly camaraderie, rockin a Play-D'oh tubie.Monday, November 1, 2010
11.1.10
Week 50!
Spoke w/ pediatric cardiologist and she said she hasn't seen a kid with a weakened heart from chemo that did not recover. Also, we are scheduled to get another EKG and echo done on Thursday. Evy's hemoglobin was low when she got it done last week and that can cause false results. She is getting a blood transfusion tomorrow so she should be fine for the EKG and echo on Thursday. Let's all cross our fingers and toes that that is the case. I am prepared for the worst heart-wise but I would really prefer to not have to see it happen.
Halloween pics to come at some point soon.. and those vacation photos, too. Been very busy!
Spoke w/ pediatric cardiologist and she said she hasn't seen a kid with a weakened heart from chemo that did not recover. Also, we are scheduled to get another EKG and echo done on Thursday. Evy's hemoglobin was low when she got it done last week and that can cause false results. She is getting a blood transfusion tomorrow so she should be fine for the EKG and echo on Thursday. Let's all cross our fingers and toes that that is the case. I am prepared for the worst heart-wise but I would really prefer to not have to see it happen.
Halloween pics to come at some point soon.. and those vacation photos, too. Been very busy!
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