:12 PM, EDT
Today's Day of Tests:
Just to start off this was the schedule for today:
10:00 Echo
11:00 Audio
12:30 Blood Draw
2:00 Eye Exam
3:30 Injection
We left the house around 7:30, too early for Ally to nap on the way to the hospital...
She did nap for about the last 10 minutes of the ride.
Ally did very well throughout the day, with only a 10 minute morning nap. She was very playful during the echocardiogram, she was cute during her hearing exam (they think they detect a very small amount of hearing loss, but not enough to need hearing aides just yet). She was great at the clinic when they took some blood. Even though they were 30 minutes late for her eye exam she only cried when I had to cover one eye and when they put drops in her eyes. (The eye doc said he didn't see anything to worry about with her eyes.) Lastly she just needed the injection through her central line.
She was asleep by the time we left the parking lot, slept the WHOLE way home without a peep!
Just a little bit after I posted this the first time: Her doc called and said they are adding one more test tomorrow while she is under. Boston really needs good results for her hearing test, so they are going to do another test. She will actually have 3 in the morning, wake up for a brief period and then go back under for a 2:30 test.
Today's Day of Tests:
Just to start off this was the schedule for today:
10:00 Echo
11:00 Audio
12:30 Blood Draw
2:00 Eye Exam
3:30 Injection
We left the house around 7:30, too early for Ally to nap on the way to the hospital...
She did nap for about the last 10 minutes of the ride.
Ally did very well throughout the day, with only a 10 minute morning nap. She was very playful during the echocardiogram, she was cute during her hearing exam (they think they detect a very small amount of hearing loss, but not enough to need hearing aides just yet). She was great at the clinic when they took some blood. Even though they were 30 minutes late for her eye exam she only cried when I had to cover one eye and when they put drops in her eyes. (The eye doc said he didn't see anything to worry about with her eyes.) Lastly she just needed the injection through her central line.
She was asleep by the time we left the parking lot, slept the WHOLE way home without a peep!
Just a little bit after I posted this the first time: Her doc called and said they are adding one more test tomorrow while she is under. Boston really needs good results for her hearing test, so they are going to do another test. She will actually have 3 in the morning, wake up for a brief period and then go back under for a 2:30 test.
MONDAY, JUNE 30, 2008 04:58 PM, EDT
Ally's Parents Report:
Well, Ally was a star at Dana Farber! She made lots of friends and the doctor was impressed she never missed a chemo date and that her central line is doing so well.
They said a lot of stuff to us: it boils down to this: she will get chemo for the first 7 days, this chemo will give her similar side effects to what we have already seen, except they will be worse. Right after chemo she will get her transplant. It should take about 13-20 days for the transplant to take. She will be able to come home when her ANC level is 500 for 3 days in a row. (They are estimating she will be down there for a total of about a month.)
Things get tricky after that. We should know by the end of the week if she will have to go back and do it all again, or if she is just doing 1 transplant. If she is randomized for 2 transplants she comes home for 2 weeks inbetween and then goes back and it is basically the same schedule as above. Then she comes home for good! (of course she will be followed for pretty much the rest of her life)
We were expecting at least one big surprise today and here it is: NO VISITORS for 6 MONTHS!
Ally's Parents Report:
Well, Ally was a star at Dana Farber! She made lots of friends and the doctor was impressed she never missed a chemo date and that her central line is doing so well.
They said a lot of stuff to us: it boils down to this: she will get chemo for the first 7 days, this chemo will give her similar side effects to what we have already seen, except they will be worse. Right after chemo she will get her transplant. It should take about 13-20 days for the transplant to take. She will be able to come home when her ANC level is 500 for 3 days in a row. (They are estimating she will be down there for a total of about a month.)
Things get tricky after that. We should know by the end of the week if she will have to go back and do it all again, or if she is just doing 1 transplant. If she is randomized for 2 transplants she comes home for 2 weeks inbetween and then goes back and it is basically the same schedule as above. Then she comes home for good! (of course she will be followed for pretty much the rest of her life)
We were expecting at least one big surprise today and here it is: NO VISITORS for 6 MONTHS!
SUNDAY, JUNE 29, 2008 01:52 PM, EDT
*** All Good! ***
It has been a super weekend! Ally has been in a fantastic mood, we have been able to get a couple of walks in between the raindrops, she is eating during the day, her TPN is going smoothly at night, AND she is sleeping from 8PM to about 5AM without waking up!!! This means good sleep for mom and dad too!
She has started to take some steps again, we expect her to be back where she was before surgery soon. She is also a little chatter box lately. It is SOOOOOO much fun to have a good natured Ally who is not in pain or uncomfortable in anyway!
Monday is our big day in Boston at Dana Farber, when they tell us what to expect for the transplant. The docs at Ally's hospital said it is a pretty intensive day. We will also set up a date for her to go down there to actually start treatment.
Tuesday and Wednesday are 2 separate day trips to Ally's usual hospital.
We have a pretty busy week, but at least we have Friday off!
*** All Good! ***
It has been a super weekend! Ally has been in a fantastic mood, we have been able to get a couple of walks in between the raindrops, she is eating during the day, her TPN is going smoothly at night, AND she is sleeping from 8PM to about 5AM without waking up!!! This means good sleep for mom and dad too!
She has started to take some steps again, we expect her to be back where she was before surgery soon. She is also a little chatter box lately. It is SOOOOOO much fun to have a good natured Ally who is not in pain or uncomfortable in anyway!
Monday is our big day in Boston at Dana Farber, when they tell us what to expect for the transplant. The docs at Ally's hospital said it is a pretty intensive day. We will also set up a date for her to go down there to actually start treatment.
Tuesday and Wednesday are 2 separate day trips to Ally's usual hospital.
We have a pretty busy week, but at least we have Friday off!
THURSDAY, JUNE 26, 2008 06:07 PM, EDT
Ally's Mom writes...
I just couldn't stay away.
It was another good day! We were not able to go for a walk, because it kept raining off and on, but we had lots of fun listening to music and playing with toys.
Her visiting nurse came today. Ally's counts are up enough so we don't have to give her the injection any more!
Her weight today is almost exactly 1 pound heavier than it was last Friday, she was 17 pounds 2 and 1/2 ounces today! The TPN must be working, and she is tolerating it well. It is about 75% sugar, but they tested her blood for sugar level today and it was good!
Ally's Mom writes...
I just couldn't stay away.
It was another good day! We were not able to go for a walk, because it kept raining off and on, but we had lots of fun listening to music and playing with toys.
Her visiting nurse came today. Ally's counts are up enough so we don't have to give her the injection any more!
Her weight today is almost exactly 1 pound heavier than it was last Friday, she was 17 pounds 2 and 1/2 ounces today! The TPN must be working, and she is tolerating it well. It is about 75% sugar, but they tested her blood for sugar level today and it was good!
WEDNESDAY, JUNE 25, 2008 07:24 AM, EDT
Ally successfully made it through her first night of TPN at home. She seems to have tolerated it well. She did run a 99.9 temp last night, but it never got higher than that!
She seems to be in a super good mood this morning, and has already had a few bites to eat!
Ally successfully made it through her first night of TPN at home. She seems to have tolerated it well. She did run a 99.9 temp last night, but it never got higher than that!
She seems to be in a super good mood this morning, and has already had a few bites to eat!
WEDNESDAY, JUNE 25, 2008 08:29 PM, EDT
What a lovely day!
We had some visitors (two Aunties plus Grammy and Grampa). We went for a nice long walk where Ally got to see LOTS of kids out for the summer (bummer...too many on the playground for us to visit it) and lots of dogs.
Ally was in a FANTASTIC mood today, and it was so nice to not have to constantly be trying to get her to eat something. She did manage to eat about 250 calories, 10 grams of fat and 9 grams of protein of yummy chocolate drink, plus she had some yogurt mixed with whipped cream.....if she does not gain weight before we go to Boston something is wrong!
I expect to have a few more good days. I'll be sure to update at least one more time before we go to Boston, but I am expecting her next few days to be like this.
I hope you all enjoy the new welcome picture...it is just Ally's way of saying "Hello!"
TUESDAY, JUNE 24, 2008 06:25 PM, EDT
Yayyy!
We are home!
They sent us home, with TPN (Total P(something) Nutrition). It goes through her central line for 12 hours. We are running it from about 6 tonight until 6 tomorrow. We have a pump, IV bags, a pole.....it's crazy. They just want to keep her weight on. We decided to do it at night, so she will eat during the day. The best part is anything she eats is extra calories, because the TPN is really all she needs! It takes about 20-30 minutes to set up, hopefully that time will shorten as we get more use to the situation.
Her mouth sores seem better today, and we have lots of magic mouth wash to help with that!
TUESDAY, JUNE 24, 2008 10:38 AM, CDT
Ally's rather tired Mommy writes:
It has been tricky keeping Allyson happy. We are pretty sure her mouth sores have reached her throat, as she keeps grabbing at it. We knew these would be a side effect, and feel lucky they have popped up at the end. Her oncologist said they will most likely be a huge problem during transplant, so much so that most kids are on morphine for them. On the plus side her magic mouthwash has seemed to make them fewer and smaller. Other than the eating they mostly cause issues with sleep, if she coughs or cries they hurt and wake her up, that is why she took a 12 minute nap this morning, and is refusing to go back down. Maybe she will take a nap on the ride home.
Ally's rather tired Mommy writes:
It has been tricky keeping Allyson happy. We are pretty sure her mouth sores have reached her throat, as she keeps grabbing at it. We knew these would be a side effect, and feel lucky they have popped up at the end. Her oncologist said they will most likely be a huge problem during transplant, so much so that most kids are on morphine for them. On the plus side her magic mouthwash has seemed to make them fewer and smaller. Other than the eating they mostly cause issues with sleep, if she coughs or cries they hurt and wake her up, that is why she took a 12 minute nap this morning, and is refusing to go back down. Maybe she will take a nap on the ride home.
SUNDAY, JUNE 22, 2008 12:39 PM, EDT
From Ally's Mom...
Ally seems to have a bit more energy today. She is happier at times than she was yesterday, but able to show her grumpy mood even more with the added energy.
She has gained a couple of ounces since being here.
She is getting red blood cells and platelets today, so that should boost her mood as well.
She has had some high temps, but her blood cultures are not growing anything (that is good!)
We have seen lot of helicopters, although it is thundering and lightning right now, so that activity has stopped (It is interesting being on the 5th floor with a HUGE window in a thunderstorm)
1 comment:
Thanks for the updates.
kheart.
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