This trip I think has been the hardest of all the trips so far.. Chloe was sick and the EUA she got from Dr. Shield's this time cause her eye to swell. She still looks like someone punched her in the left eye, she can't even open it up. Feel so bad for her... but she is so strong ...
On a good note she turns 1 on Monday!!! I can not believe she is 1 already it's crazy... but I am so proud of her she doing great with life has thrown her way and I'm glad I found a support group for Rb moms and I think that will be helpful for me in coping with everything...
Friday, May 6, 2011
Wednesday, May 4, 2011
Rough Day
We had to be at Wills Eye at 7:15am this morning and did not end up leaving there to head over to CHOP for chemo until 1:00pm. Dr Shield's says she believes chloe will have 20/20 vision in her right but her left eye is still full of fluid it may take 6 months to get rid of or it may never clear out of the eye. If it does not clear out then she will not have very good vision out of the left eye and I asked and they will not go in and remove the fluid. With her right eye getting so strong she said we will start to see the left eye getting "lazy" after all the chemo is done they will give us a patch she will need to wear on her good eye to make her use the bad eye to strengthen it. Dr. Shield's said the cancer seems to be almost gone from both eyes what is remaining of the tumors is non cancerious which is great news... I am still sad a little that it does not sound good for her left eye but i'm going to be optomisitc... they had to give some other special medicine while doing the cryo today so she has to keep a patch on her eye until tomorrow night.
When we got to CHOP for chemo she was not happy and half way through chemo they gave her some morphine for the pain. We got done with chemo around 6pm so it has been a very long day and we are all very tired. I will get back on here tomorrow and update everyone on how she is doing.
When we got to CHOP for chemo she was not happy and half way through chemo they gave her some morphine for the pain. We got done with chemo around 6pm so it has been a very long day and we are all very tired. I will get back on here tomorrow and update everyone on how she is doing.
Tuesday, May 3, 2011
3rd Round Begins
Well we made it to Philly and met with the doctors today that will take care of Chloe. Her normal doctor is not around this week, she is on vacation. Dr. Philips is the one she will see this week and he seems very nice.
I will try to everyone up to date on what is going on this week while we are here.
To get everyone up to speed on the horrible week we had last week. The cellar flooded at my parents so we had to move everything out of our apartment and moved into a camper for the week while we cleaned and dried it up in our apartment downstairs. It should be all set by the time we get home. Then saturady Travis went to work and worked then was told he was fired. Perfect timing right?? His company Direct Reconditioning was so kind to let him go with no explanation of why to put the icing on the cake we called yesterday to make sure everything would be ok with our health insurance (our insurance was through his work) to find out "coincidently" his benefits ended the same day they let him go. So yesterday needless to say was a very emotional day and I had a slight panick attack. One day before leaving for Philly we find out we do not even insurance to cover out trip i ran around with my head cut off and had to make a lot of calls because my HR person was on vacation but we did get insurance through my work and should have everything set. I am still extremely extremely upset with his old company I don't know how another human being can do that to someone honestly... knowing we would be leaving in one day to get treatment for our baby girl and knowingly fire him on the last day of the month so we would not have benefits. They are scum bags in my mind and I don't know how someone can sleep at night knowing they did that to a hard working person. They knew what they were doing too because i had trav give me one owners number and talked to him about getting COBRA and he said oh we already spoke to our benefit rep and told we did not have to provide COBRA.. WHO does that knowing that someone is depending so much on those benefits... I just don't understand.. sorry for venting but thought everyone should know what kind of company they are and hope if anyone was thinking about doing any work with them they won't anymore... I wouldn't want to do work with a company that does that to their employees.
I will try to everyone up to date on what is going on this week while we are here.
To get everyone up to speed on the horrible week we had last week. The cellar flooded at my parents so we had to move everything out of our apartment and moved into a camper for the week while we cleaned and dried it up in our apartment downstairs. It should be all set by the time we get home. Then saturady Travis went to work and worked then was told he was fired. Perfect timing right?? His company Direct Reconditioning was so kind to let him go with no explanation of why to put the icing on the cake we called yesterday to make sure everything would be ok with our health insurance (our insurance was through his work) to find out "coincidently" his benefits ended the same day they let him go. So yesterday needless to say was a very emotional day and I had a slight panick attack. One day before leaving for Philly we find out we do not even insurance to cover out trip i ran around with my head cut off and had to make a lot of calls because my HR person was on vacation but we did get insurance through my work and should have everything set. I am still extremely extremely upset with his old company I don't know how another human being can do that to someone honestly... knowing we would be leaving in one day to get treatment for our baby girl and knowingly fire him on the last day of the month so we would not have benefits. They are scum bags in my mind and I don't know how someone can sleep at night knowing they did that to a hard working person. They knew what they were doing too because i had trav give me one owners number and talked to him about getting COBRA and he said oh we already spoke to our benefit rep and told we did not have to provide COBRA.. WHO does that knowing that someone is depending so much on those benefits... I just don't understand.. sorry for venting but thought everyone should know what kind of company they are and hope if anyone was thinking about doing any work with them they won't anymore... I wouldn't want to do work with a company that does that to their employees.
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