Things have been going well with radiation, and Evy continues to tolerate the anesthesia and the therapy well, with just some nausea at times. We had a touch of sickness this past Friday night, after spending the day getting radiation and then a blood transfusion. After getting home and having dinner, Evy started to have a bit of a temperature and a fast pulse. Her nose was snottier than usual as well, so we got worried. This weekend is about when her white blood counts would be low, making her susceptible to illness. We're not sure how she'll be affected this time around, since we did a modified regiment that we haven't done before. So we called the doctor, gave him the scoop, and he sent us off to the ER.
Once there, it was a lot of waiting to get seen, and then she started to feel cooler, so Brian was thinking that the trip was in vain. They took some cultures, and ordered a round of antibiotics to be safe. Her fever did go back up a little when she was there, so we were actually relieved that we made the right choice. Of course, she was tired and cranky after a long day, and our weekend was going to take a little longer to get going.
Luckily, they decided that after the antibiotics that she was stable enough to go home, and she wouldn't have to be admitted to the pediatric ward. She and Brian got home at around 1 AM, and they were both exhausted. Yesterday her condition was about the same, and she would get warm here and there, but nothing too bad. We assume she has a little virus in her that she's fighting off, hence the temperature fluctuations and the extra snot. This is probably a good sign that she actually has some white blood cells in her, as the symptoms we're seeing is her immune system fighting off the virus. And, of course, she's been a trouper through it all. Knock on wood, but looks like we'll be able to stay out of the hospital between these chemo rounds.
Everything else is good, especially now that it's no longer raining here. A bit of sun would be nice, though. Stella is doing well, and is ready for some outside play time.
We're going to try and upload a bunch of pictures tonight of our time so far in Boston.
Talk to you guys soon...
Sunday, February 28, 2010
Monday, February 22, 2010
2.22.10
Evy is still doing well. Over the weekend we spent an afternoon in Salem. The girls loved the recreation of the historic boat called Friendship that is docked in the harbor. They saw a ton of birds and dogs and had a grand time. Evy is inspired to practice walking when she sees new things, so that is keeping us on our toes to try to find more things to do that are outdoors or poor-immune-system friendly. Radiation is going very smoothly. The shorter drive and the valet parking is spoiling me and making me want to stay here forever!
Friday, February 19, 2010
2.19.10
Another round of chemo done. We were happily surprised that Evy's doctor planned an out patient round of chemo this time. She is home as I write and is snug as a bug sleeping with her sister in bed. That's about it. Fingers crossed for no fevers or hospital stays after this round.
Tuesday, February 16, 2010
2.16.10
Hello! We had a great weekend together as a family. We shy away from indoor activities so that the girls won't get sick, but we did take a nice stroll through Author's Ridge at the Sleepy Hollow Cemetery in Concord this weekend. We saw the graves of Louisa May Alcott, Nathaniel Hawthorne, Henry David Thoreau, and Ralph Waldo Emerson. It was so New Englandy, and so fun. (We are grooming our little history-buffs-to-be.)
Evy had a break from proton therapy yesterday due to the holiday. Today she had an MRI with no anesthesia followed by radiation. They had the MRI to monitor the fluid level around her brain. They thought they could do it without anesthesia, so we went along for the ride. Evy got pretty scared of the machine and they wrapped her up in white towels so she couldn't move her head. She started to cry but then the nurse told her she looked like a baby polar bear. Evy got a perplexed look on her face and then just kept that face on for the rest of the procedure. They instructed me to lay down on top of her legs so she could see my face and then they slid us both into the machine. The MRI machine makes very loud noises that are pretty jarring for an adult, so I feel quite bad for Evy that she had to endure it awake. I understand that if she can do it without anesthesia it is best, but in a perfect world they could have just kept her asleep from radiation and then just wheeled her over. I am imagining her waking up from a dream when she is older asking me if she ever went to a disco dressed in white towels. I was quite nauseous when we got out of the machine, but Evy seemed just fine.
Then we headed over for radiation. The radiation machine had broken down this morning (that is why we did the MRI first.) Luckily when we got there it had just been repaired and Evy got in first. While we waited in the waiting room, Evy was practicing walking. She noticed that a woman had draped her fur-lined coat over a nearby seat and started panting like a dog. She kept motioning over to the coat implying that she wanted to pet the dog. I had to continuously explain to her that the fur was not a dog and luckily we were soon called for our appointment. Thankfully, the coat's owner's back was to us so I did not have to witness her reaction!
Evy is scheduled to begin chemo again tomorrow, so we will surely enjoy this snowy afternoon together at home.
Evy had a break from proton therapy yesterday due to the holiday. Today she had an MRI with no anesthesia followed by radiation. They had the MRI to monitor the fluid level around her brain. They thought they could do it without anesthesia, so we went along for the ride. Evy got pretty scared of the machine and they wrapped her up in white towels so she couldn't move her head. She started to cry but then the nurse told her she looked like a baby polar bear. Evy got a perplexed look on her face and then just kept that face on for the rest of the procedure. They instructed me to lay down on top of her legs so she could see my face and then they slid us both into the machine. The MRI machine makes very loud noises that are pretty jarring for an adult, so I feel quite bad for Evy that she had to endure it awake. I understand that if she can do it without anesthesia it is best, but in a perfect world they could have just kept her asleep from radiation and then just wheeled her over. I am imagining her waking up from a dream when she is older asking me if she ever went to a disco dressed in white towels. I was quite nauseous when we got out of the machine, but Evy seemed just fine.
Then we headed over for radiation. The radiation machine had broken down this morning (that is why we did the MRI first.) Luckily when we got there it had just been repaired and Evy got in first. While we waited in the waiting room, Evy was practicing walking. She noticed that a woman had draped her fur-lined coat over a nearby seat and started panting like a dog. She kept motioning over to the coat implying that she wanted to pet the dog. I had to continuously explain to her that the fur was not a dog and luckily we were soon called for our appointment. Thankfully, the coat's owner's back was to us so I did not have to witness her reaction!
Evy is scheduled to begin chemo again tomorrow, so we will surely enjoy this snowy afternoon together at home.
Thursday, February 11, 2010
2.11.10
Proton radiation has been going well. So far Evy has had two sessions. She acts like nothing happened when she wakes up from anesthesia. Nurse Rachel is the sweetest nurse ever and she takes care of Evy every day. Evy just adores her. When we take Evy into the radiation suite you can peek at the proton radiation machine and it is gigantic. Very impressive stuff. Very sci-fi-ish. Evy's ANC is now sky-high and she is feeling great.
Tuesday, February 9, 2010
2-9-10
When Evy woke up this morning her platelets were low and she needed a transfusion. The Radiation Oncologists decided to postpone her start of radiation until tomorrow. Evy got to hang out with both Mama and Dada all day today. She is very happy and comfortable. We are supposed to get a bit of snow tomorrow morning. Radiation makes me nervous, but I really like the idea of a peaceful snowfall going on outside on her first day. Just a nice mental image.
Monday, February 8, 2010
2-8-10, Back in MGH
[Dada]
Well, Evy woke up this morning at 4:30 with a slight fever (100.5), and so we headed back into the hospital. She's doing fine, and her fever has actually gone down. Tomorrow morning we'll get her blood cultures back, and see if she actually has an infection or it's just her body trying to fight something off with very few white blood cells. As always, she's happy. (On the phone this morning, the doctor asked if she was cranky/upset, and then said "well, she's never really upset, is she?") She doesn't have any other symptoms, so they're not worried about cold, flu, etc. But, since her counts are so low, we get our own room this time. Which is WAY better, since now we have room to play, sit by the window, actually walk around, etc. We're on the 17th floor with a great view of Cambridge, and all the medical helicopters land just around the corner on the roof of the next building, so we are very excited to see all of them. The hospital also had a little baby doll for Evy, which she's really taken to. She's even tried to nurse her a few times. But she still likes throwing her off the bed, so it's a bit of mixed signals. On a slightly stranger note, Evy now thinks it's hilarious to pretend to nurse when I'm holding her. It's right on that fine line between cute and creepy, plus she keeps getting my shirt wet. She's totally nuts, which we love.
So that's the story for now. I'll post tomorrow when we know any results. The doctors don't think she'll be sick enough to postpone her proton therapy, so that will be starting tomorrow morning. It should be exciting to get that treatment underway and keep moving forward in the fight. And, I'm kinda hoping that the radiation somehow gives her superhero powers, which is usually how it goes in comic books. Now you can all think up whatever powers you think Evy would be best suited to have, and imagine her in spandex tights and a cape.
Goodnight!
Well, Evy woke up this morning at 4:30 with a slight fever (100.5), and so we headed back into the hospital. She's doing fine, and her fever has actually gone down. Tomorrow morning we'll get her blood cultures back, and see if she actually has an infection or it's just her body trying to fight something off with very few white blood cells. As always, she's happy. (On the phone this morning, the doctor asked if she was cranky/upset, and then said "well, she's never really upset, is she?") She doesn't have any other symptoms, so they're not worried about cold, flu, etc. But, since her counts are so low, we get our own room this time. Which is WAY better, since now we have room to play, sit by the window, actually walk around, etc. We're on the 17th floor with a great view of Cambridge, and all the medical helicopters land just around the corner on the roof of the next building, so we are very excited to see all of them. The hospital also had a little baby doll for Evy, which she's really taken to. She's even tried to nurse her a few times. But she still likes throwing her off the bed, so it's a bit of mixed signals. On a slightly stranger note, Evy now thinks it's hilarious to pretend to nurse when I'm holding her. It's right on that fine line between cute and creepy, plus she keeps getting my shirt wet. She's totally nuts, which we love.
So that's the story for now. I'll post tomorrow when we know any results. The doctors don't think she'll be sick enough to postpone her proton therapy, so that will be starting tomorrow morning. It should be exciting to get that treatment underway and keep moving forward in the fight. And, I'm kinda hoping that the radiation somehow gives her superhero powers, which is usually how it goes in comic books. Now you can all think up whatever powers you think Evy would be best suited to have, and imagine her in spandex tights and a cape.
Goodnight!
Saturday, February 6, 2010
2.6.10
[dada]
Hope all you Virginians are surviving El Blizzardo. I'm sure the capital area has all but closed down for the snowpocalypse. It is COLD here, but not much precipitation.
Things here are quiet, which is good. Well, not literally quiet, except for nap time and after bed, but quiet on the medical front. And I know all our dedicated blogees are checking for updates. Evy's been healthy except for nausea, a little dehydration, and needing a blood transfusion, which is pretty typical after a round of chemo. But, no fevers or illnesses, and she's been keeping most of her feedings down. She is also starting to take nibbles of food, so we hope she gets her appetite back. Walking keeps getting better and better, and she mostly needs confidence now to start roaming freely.
Other than that, we're just hanging out waiting for proton therapy to begin on Tuesday. Evy has had good experiences with anaesthesia, and we hope that will be the case once she starts getting it on a daily basis.
Stella is our little nurse, and we often find her pretending to be putting medicine into Evy's tubes. She has also become much gentler during all this, often stops to give Evy hugs, and is always making sure that Evy is included, has one of whatever she has, and constantly asks "Ebbie?" (her pronunciation of Evy). Both girls are picking up new words all the time and will be spouting off full sentences in no time. Which is frightening.
So, that's what's going on. We'll let everyone know how our first days of protons go in a couple of days.
Hope all you Virginians are surviving El Blizzardo. I'm sure the capital area has all but closed down for the snowpocalypse. It is COLD here, but not much precipitation.
Things here are quiet, which is good. Well, not literally quiet, except for nap time and after bed, but quiet on the medical front. And I know all our dedicated blogees are checking for updates. Evy's been healthy except for nausea, a little dehydration, and needing a blood transfusion, which is pretty typical after a round of chemo. But, no fevers or illnesses, and she's been keeping most of her feedings down. She is also starting to take nibbles of food, so we hope she gets her appetite back. Walking keeps getting better and better, and she mostly needs confidence now to start roaming freely.
Other than that, we're just hanging out waiting for proton therapy to begin on Tuesday. Evy has had good experiences with anaesthesia, and we hope that will be the case once she starts getting it on a daily basis.
Stella is our little nurse, and we often find her pretending to be putting medicine into Evy's tubes. She has also become much gentler during all this, often stops to give Evy hugs, and is always making sure that Evy is included, has one of whatever she has, and constantly asks "Ebbie?" (her pronunciation of Evy). Both girls are picking up new words all the time and will be spouting off full sentences in no time. Which is frightening.
So, that's what's going on. We'll let everyone know how our first days of protons go in a couple of days.
Wednesday, February 3, 2010
2.3.10
Evy ended up coming home yesterday with pizza in tow. She has been able to tolerate Pedialyte but still cannot keep her thicker, liquid food down (except for when she nurses.) We had a fun day today making Valentine's Day decorations. Tomorrow she will go to the Clinic and probably get transfused.
Tuesday, February 2, 2010
2.2.10
First, I promise to be better about updating daily, even if not much happens. I get emails from people saying, "what is happening?" and then I realize that I haven't updated the blog recently.
Evy has been home since Sunday afternoon. She has been very nauseous but has not run a fever. (If she gets a fever over 100.4, we head back to the hospital.) Today she was unable to keep anything down, so we decided to have her go into the clinic for hydration and an assessment by our Oncologist. Brian just left with Evy about 20 minutes ago. I hope to update tomorrow to say that they sent her home, all looks well, and that Brian picked up a pizza from our favorite new vegan pizzeria which just happens to be on the way home from the hospital.
In great news, Evy took three steps by herself today! Now go do the "Little Evy Three Step", the hottest new dance move in da streets!
PS- Check out my friend Andie's blog for info about the 15K for Evy and fundraising: http://runtohelpevybeatscancer.blogspot.com/
Evy has been home since Sunday afternoon. She has been very nauseous but has not run a fever. (If she gets a fever over 100.4, we head back to the hospital.) Today she was unable to keep anything down, so we decided to have her go into the clinic for hydration and an assessment by our Oncologist. Brian just left with Evy about 20 minutes ago. I hope to update tomorrow to say that they sent her home, all looks well, and that Brian picked up a pizza from our favorite new vegan pizzeria which just happens to be on the way home from the hospital.
In great news, Evy took three steps by herself today! Now go do the "Little Evy Three Step", the hottest new dance move in da streets!
PS- Check out my friend Andie's blog for info about the 15K for Evy and fundraising: http://runtohelpevybeatscancer.blogspot.com/
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