We'll head up to Duke early tomorrow morning for Isaiah's last round of chemotherapy! While this will be the last round, we're still waiting on the results of the genetic test. We're hoping to get the results by the end of August. Isaiah has been very strong through the entire battle and continues to do great. We can see the effects from the chemo lasting longer. His ANC (ability to fight off infection/composite of your white blood cell count) was very low last week, requiring an unscheduled blood test this past Friday. The results from this past Friday were the bare minimum to receive chemo. His levels most likely continued to climb since Friday, so we'll be good to go tomorrow morning.
I've learned a lot since Isaiah was diagnosed with Retinoblasoma in December. I've learned that kid's are resilient and adapt very quickly to new surroundings & situations. The medical staff at Duke Children's Hospital & the Duke Eye Center are absolutely a God Send. Our family and friends have carried our family through - from bringing dinner over, watching our kids or even our pets while we take Isaiah to Duke, helping us out with expenses. My insurance company has been very helpful with coverage, despite a few minor issues finding an anaplastologist to make Isaiah's fake eye in February. Levi's preschool teacher and the entire preschool staff was our greatest means of local help since neither mine or Erica's family live in North Carolina. We started going to the church where Levi went to preschool, and have been there a few times since January. We initially had a couple folks from the church come and visit us. Unfortunately we weren't able to go to church much due to Isaiah's blood counts and how susceptible he is to getting sick. When we asked for help, family and friends were always there. Our prayers were answered: Isaiah has done great through his treatment requiring very little extra medical care and not requiring a transfusion. Please continue to lift Isaiah up in your prayers. The 6th round is his last!
What Next: In the short term, Isaiah will continue to have his blood checked. We'll find out tomorrow what appointments there will be in the next couple months. Isaiah will also have his port taken out, requiring another surgery. He'll continue to have EUAs (examination under anesthesia) to check his right eye and make sure it is still cancer free. We'll be able to confirm/deny whether cancer will develop in his right eye when we receive the genetic results. He'll also go back for several CT scans over the next couple years and will get regular blood checks to make sure there is no leukemia (a rare but negative development from receiving chemo). The appointments will be more frequent in the near-term and will start to go longer after about 6-12 months.
We're getting ready to move back to Georgia. We've lived in North Carolina for the past 3 years - and in Florida for 2 years before that. Its time to get back home and close to family. We'll probably move around the third week of July. I start my new job at the beginning of August. I'll continue to update the blog until I deploy early this fall. Hopefully Erica will pick it up - I'll be out of country.
I'll post another update on Wednesday. I removed a portion of an earlier post requesting help - we're doing much better now. If you still want to help please make a donation to the National Children's Cancer Society, Make-a Wish Foundation, or the Ronald McDonald House to help other families who are going through a similar and more often than not, a more difficult time than we are.
Children's Hospitals all over the country give kids toys, coloring books, music CD's, computer games, etc that are dontated by people like us. These toys are usually given out on birthday's, as end of treatment presents, or on a rough day. These kids are away from their home, fighting for their lives, and under an immense amount of emotional and sometimes physical pain. Their parents are also struggling, sometimes in simply making ends meet, paying for gas to get their kid to treatment or finding a place to stay. There are organizations that help - however we can provide gift cards for gas, Target, Wal-mart, etc to assist these families while they are away for treatment. I encourage anyone reading this to find a way to either volunteer or donate. Contact a Social Worker at a Children's Hospital near you to find out.
God Bless,
Damon
I've learned a lot since Isaiah was diagnosed with Retinoblasoma in December. I've learned that kid's are resilient and adapt very quickly to new surroundings & situations. The medical staff at Duke Children's Hospital & the Duke Eye Center are absolutely a God Send. Our family and friends have carried our family through - from bringing dinner over, watching our kids or even our pets while we take Isaiah to Duke, helping us out with expenses. My insurance company has been very helpful with coverage, despite a few minor issues finding an anaplastologist to make Isaiah's fake eye in February. Levi's preschool teacher and the entire preschool staff was our greatest means of local help since neither mine or Erica's family live in North Carolina. We started going to the church where Levi went to preschool, and have been there a few times since January. We initially had a couple folks from the church come and visit us. Unfortunately we weren't able to go to church much due to Isaiah's blood counts and how susceptible he is to getting sick. When we asked for help, family and friends were always there. Our prayers were answered: Isaiah has done great through his treatment requiring very little extra medical care and not requiring a transfusion. Please continue to lift Isaiah up in your prayers. The 6th round is his last!
What Next: In the short term, Isaiah will continue to have his blood checked. We'll find out tomorrow what appointments there will be in the next couple months. Isaiah will also have his port taken out, requiring another surgery. He'll continue to have EUAs (examination under anesthesia) to check his right eye and make sure it is still cancer free. We'll be able to confirm/deny whether cancer will develop in his right eye when we receive the genetic results. He'll also go back for several CT scans over the next couple years and will get regular blood checks to make sure there is no leukemia (a rare but negative development from receiving chemo). The appointments will be more frequent in the near-term and will start to go longer after about 6-12 months.
We're getting ready to move back to Georgia. We've lived in North Carolina for the past 3 years - and in Florida for 2 years before that. Its time to get back home and close to family. We'll probably move around the third week of July. I start my new job at the beginning of August. I'll continue to update the blog until I deploy early this fall. Hopefully Erica will pick it up - I'll be out of country.
I'll post another update on Wednesday. I removed a portion of an earlier post requesting help - we're doing much better now. If you still want to help please make a donation to the National Children's Cancer Society, Make-a Wish Foundation, or the Ronald McDonald House to help other families who are going through a similar and more often than not, a more difficult time than we are.
Children's Hospitals all over the country give kids toys, coloring books, music CD's, computer games, etc that are dontated by people like us. These toys are usually given out on birthday's, as end of treatment presents, or on a rough day. These kids are away from their home, fighting for their lives, and under an immense amount of emotional and sometimes physical pain. Their parents are also struggling, sometimes in simply making ends meet, paying for gas to get their kid to treatment or finding a place to stay. There are organizations that help - however we can provide gift cards for gas, Target, Wal-mart, etc to assist these families while they are away for treatment. I encourage anyone reading this to find a way to either volunteer or donate. Contact a Social Worker at a Children's Hospital near you to find out.
God Bless,
Damon
YAY!!! So glad he can get his last round of Chemo! We have been praying since Erica sent out an email last week!
ReplyDeleteWhat a great post. I appreciated hearing all the ways we can help.
ReplyDeleteIt was so awesome to get to see ya'll this weekend. You have a really lovely family and Lucas loved playing with Isaiah and Levi.
ReplyDelete