Ok well this time has not been to bad ... Chloe has not gotten sick at all and her mood is fairly good for what she goes through here. We went to her EUA yesterday which our appointment was at 10am and we never left Will's Eye until 3pm.. because of that we had to rush over to CHOP in order for them to still have time yesterday to get her 1st day of chemo started but we made it!
At Will's Dr. Shield told us that the tumors in her right eye are not shrinking any more and she thinks there at the size they will always remain she believes and the tumor is about 3cm from the central vision but she feels pretty good saying that she will more than likely have 20/20 in the right eye... they did discover a new seed growing in her left eye and they did cryo treatment on it, the fluid has decreased a lot since last treatment as well in the left eye which is good.. Dr. Shield's told us that she believes Chloe will be able to see out of the top half of her eye in the left. I also asked the question this time of the likely hood of after the last treatment of new seeds coming back she told us 1 in 5 chance so it is likely that she may have more seeds but hopefully they will catch them before they are to large or to many to laser out... Dr. Shield's said they will laser up to 10 new seeds at a time any more than that she will have to discuss other procedures...we will still come down every 6 weeks or so for an EUA even after cancer so that she can catch the seeds if new ones form... so needless to say we have a long road ahead still and those days of EUA's will be very difficult ones for us but everyone has been so great in supporting us..
We have met another couple from Utica, NY while down here and exchanged information so we could keep in touch... we wish them the best of luck as well... definetly nice to know people that are going through the same things you are... this trip has been extremely overwhelming for me for some reason.. not that anything has gone wrong just really could use a vacation this year LOL ... that's not happening with the time i have taken off for the travel back and forth from Philly but me being tired and overwhelmed i would do a thousand times more to help my baby girl.. she is amazing :)
Thursday, June 30, 2011
Friday, June 3, 2011
4th Round Not so Good
Well we had to come down here this round on Ethan's birthday so we decided to bring him with us. The past couple of times we have been down they have gone smoothly but of course this trip has been anything but smooth unfortunately. We went to Will's Eye Wednesday morning to get Chloe's cryo at 7:30am and then when we were done there we went straight to CHOP for her chemo and got back to Ronald McDonald House around 7pm. Even though it was a really long day Ethan did great. All of a sudden around 11:30pm Chloe started not feeling well. She got sick, which is normal and then we put her back to bed after cleaning her up. Then she got up again around 12:30 and again at 3am getting sick. At that point she seemed warm so we took her temp and it was 103.7 so we called the overnight number for the on call doctor and waiting for a half hour for them to call and they did not. She got sick again at 4:30am and took her temp again and it was 104.2 so we called again and of course we did not get a call back again and I just decided we needed to pack up and get to the hospital. When we got to the hospital her temp was 104.5 and they gave her tylenol to help and immediately admitted her to the hospital.
So needless to say we have been in the hospital since early thursday morning with poor Chloe. They did a lot of tests on her including blood work, x ray and urine samples. Everything came back negative so they are assuming it is just a GI virus and it has to run its course. The doctor had decided because of the fever and her sodium being dangerously low they would not give her the second round of chemo on Thursday. They explained with her sodium low and then if they gave her chemo she could possibly have a seizure so they did not want to take that chance. They have had her hooked up to fluids with sodium since yesterday and she is still hooked up. Her sodium is back up so we are now waiting for her chemo to be delivered so we could give her the second day of chemo (it's 8pm friday night).
Needless to say this trip has not been good and instead of leaving early friday morning as usual we are still in Philly in the hospital and not sure when we will be leaving. Through all of this though Ethan has been great and wanting to help out Chloe. I just feel so bad for her, she has gone through so much I so badly just want to take her place. :(
So needless to say we have been in the hospital since early thursday morning with poor Chloe. They did a lot of tests on her including blood work, x ray and urine samples. Everything came back negative so they are assuming it is just a GI virus and it has to run its course. The doctor had decided because of the fever and her sodium being dangerously low they would not give her the second round of chemo on Thursday. They explained with her sodium low and then if they gave her chemo she could possibly have a seizure so they did not want to take that chance. They have had her hooked up to fluids with sodium since yesterday and she is still hooked up. Her sodium is back up so we are now waiting for her chemo to be delivered so we could give her the second day of chemo (it's 8pm friday night).
Needless to say this trip has not been good and instead of leaving early friday morning as usual we are still in Philly in the hospital and not sure when we will be leaving. Through all of this though Ethan has been great and wanting to help out Chloe. I just feel so bad for her, she has gone through so much I so badly just want to take her place. :(
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