Wednesday, March 30, 2011
Round 2 Begins next week...
We are heading to Philly again April 5th for our 2nd round of treatments. We will leave the night of the 5th and her chryo treatment will be in the morning of the 6th. Unfortunately our insurance company is not being very friendly and refuses to let her get her treatment done by the specialists that actually know what is going on with my baby.. so we have to go to Philly for the chryo treatment (because this procedure is done only in 3 places in the US and Philly is the closest to us) and then we have to drive immediately back so we can get her chemo done here in Syracuse. The specialist in Philly has to send the doctor here the treatment plan and how to administer what Chloe needs which does not make me happy that we have to have someone that does not specialize in Retinoblastoma administer the chemo treatments. On top of that the last chryo treatment did not go very well. Chloe stopped breathing and then was screaming in pain after and had to get morphin from the onocologist. So if we are traveling back this time that means she won't be able to have morphin if she is in pain again... so frustrating ... insurance stinks and doesn't care about the individual. They are making a difficult situation even worse... thanks New York State!!
Tuesday, March 29, 2011
Good Articles
A lot of friends and family want to know more about what retinoblastoma is so here are some articles that you can read. Chloe has germinal retinoblastoma and hers it bilateral.
http://ghr.nlm.nih.gov/condition/retinoblastoma
http://www.eyecancer.com/Patient/Condition.aspx?nID=53&Category=Retinal+Tumors&Condition=Retinoblastoma
http://ghr.nlm.nih.gov/condition/retinoblastoma
http://www.eyecancer.com/Patient/Condition.aspx?nID=53&Category=Retinal+Tumors&Condition=Retinoblastoma
Sunday, March 27, 2011
Benefit on April 9th, 2011 for Chloe
Just wanted to put the information on chloe's blog for the benefit that my mother in law is doing for Chloe.
Walk A Thon on April 9th @ Mexcio High School Track, starts 12pm
T-shirts and wrist bands will be for sale.
After the walk we will go over to the high school gym for a benefit.
We have had some great donations for the benefit that will be raffled off, to list some of them:
- 4 VIP New York Yankees
- Boy Bicycle
- Girl Bicycle
- 32" Flat Screen TV
- 4 free oil changes
- gift certificates for various place
- scratch off board
and much more....
There will be a bake sale and food and drinks after the walk at the benefit as well...
I just want to say thank you so much to everyone that has been helping and that want to help we really appreciate it. The amount of prayers and caring people that have been keeping our spirits up is overwhelming and we are so appreciative...thank you to everyone!!!
Walk A Thon on April 9th @ Mexcio High School Track, starts 12pm
T-shirts and wrist bands will be for sale.
After the walk we will go over to the high school gym for a benefit.
We have had some great donations for the benefit that will be raffled off, to list some of them:
- 4 VIP New York Yankees
- Boy Bicycle
- Girl Bicycle
- 32" Flat Screen TV
- 4 free oil changes
- gift certificates for various place
- scratch off board
and much more....
There will be a bake sale and food and drinks after the walk at the benefit as well...
I just want to say thank you so much to everyone that has been helping and that want to help we really appreciate it. The amount of prayers and caring people that have been keeping our spirits up is overwhelming and we are so appreciative...thank you to everyone!!!
Wednesday, March 16, 2011
Event Posted on Facebook
We have had a lot of people asking about the walk a thon and benefit so my sister made an event page on facebook. Click on Link to see it! http://www.facebook.com/#!/event.php?eid=105865526163096
Monday, March 14, 2011
Shot Day
Today went well ... we went and picked up Chloe's shot that she needs to have after her Chemo treatments (this shot helps her white cell count stay up) and then went over to the doctors and he gave the shot to her and checked her blood counts and they all are good. He said they usually see a drop after 14 days after the chemo so hopefully at that time they do not drop to low. She did drop a pound and a half which I didn't like hopefully her appetite comes back soon...
Sunday, March 13, 2011
Back Home
We are so happy to be back home and be able to see Ethan. We really missed our family and friends. Chloe is doing pretty good she doesn't haven't much of an appetite but we have medicine that is suppose to be helping that.. she hasn't gotten sick at all so that is good. We go tomorrow to our pediatrician to get a shot that will help Chloe so that her white cells will not dip to low... and then it is back to work on Tuesday until our next trip to Philly.
I am really nervous to leave Chloe on Tuesday. I know she will be with my sister but there is so much to watch for and all she wants is me.. it will be fine just hard...
I wanted to also say thank you to my mother in law, her friends and my sister for putting together a walk for Chloe. I know they have been working hard to put it together and it means so much to us... thank you.
I am really nervous to leave Chloe on Tuesday. I know she will be with my sister but there is so much to watch for and all she wants is me.. it will be fine just hard...
I wanted to also say thank you to my mother in law, her friends and my sister for putting together a walk for Chloe. I know they have been working hard to put it together and it means so much to us... thank you.
Saturday, March 12, 2011
We are Home!
We are finally home!
First round done, five more to go... Chloe did well yesterday with her 2nd day of chemo. She has not gotten sick yet which is good ... it is kind of overwhelming though... it's not just ok we did our 2 days of chemo and we are good till the next itme we go back to Philly ... she has 3 different medicines that we need to give her... she has to get her blood levels taken each week... we have to be careful she is not around anyone that is sick so we will have hand santizare around all the time... any fever above 101.4 it's straight to the hospital... we have to watch her eatting habits, her getting sick and they said by the end of the 2nd round of chemo she will probably lose her hair.
So much to take in but we are doing it and Chloe is doing well, which is the most important thing. I just want to say thank you so much for everyones support and love we could not get through this without the support it means so much to us..
First round done, five more to go... Chloe did well yesterday with her 2nd day of chemo. She has not gotten sick yet which is good ... it is kind of overwhelming though... it's not just ok we did our 2 days of chemo and we are good till the next itme we go back to Philly ... she has 3 different medicines that we need to give her... she has to get her blood levels taken each week... we have to be careful she is not around anyone that is sick so we will have hand santizare around all the time... any fever above 101.4 it's straight to the hospital... we have to watch her eatting habits, her getting sick and they said by the end of the 2nd round of chemo she will probably lose her hair.
So much to take in but we are doing it and Chloe is doing well, which is the most important thing. I just want to say thank you so much for everyones support and love we could not get through this without the support it means so much to us..
Wednesday, March 9, 2011
Long Day
Today was suppose to be the first day of chemo but the doctor here had to fight with the insurance company all day to let us have the chemo treatments through the children's hospital of philadelphia. She got it approved and then they could not get a good vein in Chloe. The poor girl got poked about 8 times yesterday when she was but under and so it made it hard for the nurses here. They tried four times and decided she needs to have a port put in for her treatments her veins just are to hard to find and in case during the treatments she needs an emergency transfusion they don't want any complications. Poor girl, now she will have a port in her chest for the next 6 months on top of everything else.
So they are admitting her to the hospital tonight and she will have surgery tomorrow for the port they are hoping she will be done with the port and can start treatments by 8pm because if she is done with her 1st treatment by midnight they will let her have her 2nd on on friday if not then we need to wait to have the 2nd treatment on saturday and then stay the following day to have the special shot they give after chemo... so we will not be returning until saturday possibly sunday possibly monday....
I just hope the ansthesia this time goes more smooth than yesterdays did.... so we will be spending the night at the hospital tonight and if we get any more information I will let everyone know.
So they are admitting her to the hospital tonight and she will have surgery tomorrow for the port they are hoping she will be done with the port and can start treatments by 8pm because if she is done with her 1st treatment by midnight they will let her have her 2nd on on friday if not then we need to wait to have the 2nd treatment on saturday and then stay the following day to have the special shot they give after chemo... so we will not be returning until saturday possibly sunday possibly monday....
I just hope the ansthesia this time goes more smooth than yesterdays did.... so we will be spending the night at the hospital tonight and if we get any more information I will let everyone know.
Tuesday, March 8, 2011
Scary Day
Today was a true eye opener as to what will be going on in the next couple of months. We had to go to the eye specialist at 10am and Chloe went under anesthesia so the doctor could do a "chryo" treatment which is the doctor freezing the eye before each chemo treatment she recieves. They brought us back to a private room after the procedure so the doctor could tell us what she saw. Chloe has 2 tumors in the right eye at a grade C and has 5 tumors in her left eye at a grade D. They grade cancer from A to E ... so after that the doctor said they would be in shortly to get us and bring us to Chloe. A hour and a half later the doctor came in to tell us that there was a complication when Chloe was coming out of the anesthesia and she stopped breathing for a little bit and they had to resesitate her... I obviously lost it and they let us go back to see her so we knew she was ok but we had to go back and wait in the waiting room for her to be done with her breathing treatment to see her. When we saw her she looked not even like herself they inject a dye that makes her skin have a yellow tint and her little eyes are so swollen she could barely open them and we had to keep talking to her because she was having a hard time waking up...
Then we went over to the onocoligist at the Children's hospital to meet her specialist there and to go over what will be happening. Chloe will be getting a high dose of chemo, she may get sick, she may lose her hair, we have to be careful with her being around others because she will be acceptable to infections and getting sick... and any sign of a fever we need to go to the hospital immediately...
So the plan for the next six months is to go to Dr. Dracker in syracuse to get her signed off to have anesthesia, then go to eye doctor to get her chryo treatment done to her eyes, then 2 days of chemo and then we need to stay the day after so she can have a special shot that will keep her blood levels from dipping to low. So we will have to take a week off each month for the next 6 months. In between treatments she needs to get her blood taken each week. After treatments are all done she will need to come see the eye specialist every 3 months just so they can check and make sure no new tumors are forming..
I am so happy that in the end we will have our little girl and she will have some if not all of her vision but I am so so sad for what she will be put through the next couple of months. I just feel so bad for her but we are trying out best to be very strong for her...
Then we went over to the onocoligist at the Children's hospital to meet her specialist there and to go over what will be happening. Chloe will be getting a high dose of chemo, she may get sick, she may lose her hair, we have to be careful with her being around others because she will be acceptable to infections and getting sick... and any sign of a fever we need to go to the hospital immediately...
So the plan for the next six months is to go to Dr. Dracker in syracuse to get her signed off to have anesthesia, then go to eye doctor to get her chryo treatment done to her eyes, then 2 days of chemo and then we need to stay the day after so she can have a special shot that will keep her blood levels from dipping to low. So we will have to take a week off each month for the next 6 months. In between treatments she needs to get her blood taken each week. After treatments are all done she will need to come see the eye specialist every 3 months just so they can check and make sure no new tumors are forming..
I am so happy that in the end we will have our little girl and she will have some if not all of her vision but I am so so sad for what she will be put through the next couple of months. I just feel so bad for her but we are trying out best to be very strong for her...
Going Under Again
Poor Chloe has to get anesthesia again today. They said she can not have anything to drink or eat after midnight and her appointment is not until 10:15am so I would add at least a half hour to that until she actually is in and ready probably. My poor girl, it's 7:50am and she already keeps saying ba ba ba ba ... not going to be a fun morning.
We meet with the specialist that will give us more information on the chemo treatments today also so we know more of what will be happening with the procedures as well... I will keep everyone posted as soon as I know more.
We meet with the specialist that will give us more information on the chemo treatments today also so we know more of what will be happening with the procedures as well... I will keep everyone posted as soon as I know more.
Monday, March 7, 2011
Our Day with the Specialist
Today was a long day, we met with Dr. Shield's at Wills Eye Center. It was hard to see all the test they had to do on her today but all the doctors were great with her.
Dr. Shield's diagnosis is she definetly has retinoblastoma in both of her eyes. The left is worse than the right and they have decided that chemo therapy is best for her situation. She will be going through 6 treatments. The treatments will be for 2 days once a month. So we will be visiting Philly once a month at least until August. But the doctor seemed very optomistic in saving both eyes. With the left as bad as it is she is not sure about how well she will be able to see out of that eye but only time will tell... so we have a long journey ahead of us but we are so happy that her life will be saved and she will be able to keep both of her eyes.
So tomorrow we will go to the doctors and they are putting under again to get better pictures of her eyes. Then they are going to try to get the chemo started tomorrow, if not, she will start it on wednesday.
I also just want to say thank you to everyone again on the support we have been given. It means so much to us more than we can say.
http://www.eyecancerinfo.com/
Dr. Shield's diagnosis is she definetly has retinoblastoma in both of her eyes. The left is worse than the right and they have decided that chemo therapy is best for her situation. She will be going through 6 treatments. The treatments will be for 2 days once a month. So we will be visiting Philly once a month at least until August. But the doctor seemed very optomistic in saving both eyes. With the left as bad as it is she is not sure about how well she will be able to see out of that eye but only time will tell... so we have a long journey ahead of us but we are so happy that her life will be saved and she will be able to keep both of her eyes.
So tomorrow we will go to the doctors and they are putting under again to get better pictures of her eyes. Then they are going to try to get the chemo started tomorrow, if not, she will start it on wednesday.
I also just want to say thank you to everyone again on the support we have been given. It means so much to us more than we can say.
http://www.eyecancerinfo.com/
Sunday, March 6, 2011
Travel Day
My mother had a brunch at the house this morning so that family could come over and see us before we left. Now we are getting ready to take our 5 hour trip... we will keep you all posted after we hear from the specialist tomorrow. Keep your fingers crossed for us that this will be the best possible news in our situation tomorrow... that's what we are hoping for.
Again thank you so much for everyones support it has meant so much to us...
Again thank you so much for everyones support it has meant so much to us...
Saturday, March 5, 2011
Relaxing Day before our Trip
This has been so emotional... thursday i just was physical sick and shaking ... didn't sleep more than 3 hours in total.... yesterday i felt kind of numb... didn't cry to much... I had a good night sleep last night but then i just woke up crying and just feel very very sad again today... I think it's a lot of things in one today.
I don't want to leave Ethan tomorrow because we don't know when we will be back so that is hard.. we have to tell him what is going on and that we are leaving for a little while today that will be hard too... we are going to try and skype (never have done this) so if anyone knows how to and could help that would be great. I also want to get down there and see what the specialist have to say Monday and another part of me is so scared of what they will say too... ugh... this just is not fair I wish it was me and not my baby girl... but she is strong and has an awesome personality and we are trying to be strong for her...
Well we are off to go to breakfast to see our best friends jess and josh and then we have to go over to peditricians to get everything we need for our trip...
I don't want to leave Ethan tomorrow because we don't know when we will be back so that is hard.. we have to tell him what is going on and that we are leaving for a little while today that will be hard too... we are going to try and skype (never have done this) so if anyone knows how to and could help that would be great. I also want to get down there and see what the specialist have to say Monday and another part of me is so scared of what they will say too... ugh... this just is not fair I wish it was me and not my baby girl... but she is strong and has an awesome personality and we are trying to be strong for her...
Well we are off to go to breakfast to see our best friends jess and josh and then we have to go over to peditricians to get everything we need for our trip...
Friday, March 4, 2011
Thank You
I just wanted to say thank you so much to everyone. Michelle and Laura came over and dropped us off a "thinking of you" gift from some of our friends. We truly are so thankful and appreciate having everyone of you in our lives... thank you so much
Day 2
Wow.... still in shock I think... today was a really long day. We were at University Hospital for Chloe's MRI at 7:45am today and never left there until 1:30pm. Chloe did well it was hard seeing them put her under for the MRI but she is doing ok now, just a little sleepy.
We left the hospital went straight over to her pediatrician's office. Can I tell you if you have or your having children, Summerwood is just the best place for kids. Dr. Draker was so caring today and treated us as if we were family. Gave us all his personal information (e-mail, pager, home number, private number) and told us if we need him at any time to not hesitate to call. He said that he wants to be here for us no matter what. He set everything up with our insurance so we don't have to worry about that and he helped us find an efficiency hotel in Philly so we didn't have to spend money eatting out everyday. I am so thankful for him and his practice ... they are amazing...
Dr. Draker showed us the MRI and showed us the scans of her eyes. The right eye only has two specs on it so we are very hopeful with that one. The left eye is about half full with a tumor but he said he believes they will still try laser or chemo first before even thinking about removing the eye. So we are praying for good news on Monday that they are hopeful to save both of them.... ugh... this is just so stressful. But Trav and I will stay strong for our children and Chloe is strong so we will make it through this...
I wanted to say thank you so much for all the prayers we have gotten from family and friends... it truely means a lot to us...
So with that said. We will be taking off for Philly on Sunday and then hoping for the best news possible on Monday...
We left the hospital went straight over to her pediatrician's office. Can I tell you if you have or your having children, Summerwood is just the best place for kids. Dr. Draker was so caring today and treated us as if we were family. Gave us all his personal information (e-mail, pager, home number, private number) and told us if we need him at any time to not hesitate to call. He said that he wants to be here for us no matter what. He set everything up with our insurance so we don't have to worry about that and he helped us find an efficiency hotel in Philly so we didn't have to spend money eatting out everyday. I am so thankful for him and his practice ... they are amazing...
Dr. Draker showed us the MRI and showed us the scans of her eyes. The right eye only has two specs on it so we are very hopeful with that one. The left eye is about half full with a tumor but he said he believes they will still try laser or chemo first before even thinking about removing the eye. So we are praying for good news on Monday that they are hopeful to save both of them.... ugh... this is just so stressful. But Trav and I will stay strong for our children and Chloe is strong so we will make it through this...
I wanted to say thank you so much for all the prayers we have gotten from family and friends... it truely means a lot to us...
So with that said. We will be taking off for Philly on Sunday and then hoping for the best news possible on Monday...
Thursday, March 3, 2011
Getting the News
Well today we recieved the news at the eye doctors that our beautiful baby girl that is only 9 months old has a tumor in her eye. Not one eye but both eyes, this is called retinoblastoma, and from what we were told this tumor is cancerous. I have been on an emotional roller coaster today to say the least.
This can be heriditary so they made us have Ethan (our 4 yr old son) checked out as well. He is good thank goodness.
The next stop is to get an MRI tomorrow at university and then go to the pediatrician's office to discuss what will be happening and get information on what we will need to do. Then we have an appointment set for Monday at 7:45am at the Children's Hospital of Philadelphia to see the specialist and i'm praying so hard that this will be quick and as painless as possible for my baby girl...
I will keep posting here at least once a day hopefully so everyone that wants to know what is going on can keep up to date with what is happening. I know we have a loving family and lots of friends that are so supportive... we love all of you... please give us lots of prayers they will be much appreciated...
Thanks,
The Hewitts'
This can be heriditary so they made us have Ethan (our 4 yr old son) checked out as well. He is good thank goodness.
The next stop is to get an MRI tomorrow at university and then go to the pediatrician's office to discuss what will be happening and get information on what we will need to do. Then we have an appointment set for Monday at 7:45am at the Children's Hospital of Philadelphia to see the specialist and i'm praying so hard that this will be quick and as painless as possible for my baby girl...
I will keep posting here at least once a day hopefully so everyone that wants to know what is going on can keep up to date with what is happening. I know we have a loving family and lots of friends that are so supportive... we love all of you... please give us lots of prayers they will be much appreciated...
Thanks,
The Hewitts'
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