Sunday, September 18, 2011
Sunday, September 18, 2011
Collin, Neya, Bill and I will be walking in the Four Diamonds Fund 5K next Sunday September 25. Please consider making a donation to help us give back to the FDF for all the help they've given us, and to raise money to help other kids with cancer. No amount is too small! Just click here to make a tax deductible donation. Thank you, thank you, thank you!
Monday, September 12, 2011
Monday, September 12, 2011
September is Childhood Cancer Awareness Month. I have been trying to post differents facts, quotes, etc. everyday on my Facebook page as my way of spreading awareness. Awareness leads to funding which leads to research which leads to cures. I know the facts and the stories I share are often grim, depressing, and hard to read. But as a parent of a child fighting cancer, I can't ignore any part of it. More than once I thought I was going to watch my baby die. I truly cannot imagine a worse experience than losing a child, but cancer takes kids away from their parents every single day. I can't know that is happening and not want to change it. But I'm not a doctor, I can't cure cancer. So I'm doing the only thing I can think of to do: fight, by increasing awareness and raising funds for research. I want something good to come out of the suffering that cancer warriors and their families go through, and I hope that my kids won't ever have to see their own children suffer through the battle. And, God forbid, if Collin's cancer were to return, or he ends up with a secondary cancer from the chemo used to fight this cancer, I want him to have more options and better treatments to help him survive.
In earlier posts I mentioned another little fighter, Conner, who was treated at Penn State Hershey Children's Hospital and then at CHOP. Conner received his angel wings on September 4 with his parents by his side. Please keep his family in your prayers as they grieve and try to carry on without their beloved son. Also remember the families of some other little fighters who have earned their wings in the last week: Lennon, Layla, Gabby, and Faith. Fly high sweet angels!
Collin had his latest clinic appointment today. He was waving and saying hi to all of the wonderful clinic staff, and even answered a few simple questions. Part way through the doctor's exam, Collin decided he was ready to leave, and started crying "go go go go go!" He drew a small crowd of doctors and nurses because they're not used to hearing him cry much. The doctor told Collin he would make the exam quick, and in the midst of his screaming he opened his mouth and said "Ahhh" or pointed to where the stethescope should go just like the doctor asked. It really was kind of funny. Then it was time for his blood draw, and (thanks to lidocaine cream) he sat still and didn't cry or flinch as the port was accessed. He's always such a trooper! I was excited to learn that he has gained another quarter of an inch in height since his last visit on August 15. He is also scheduled for surgery on October 14 to have his mediport removed. After the port is out, he'll have to go to the lab for bloodwork (instead of the awesome clinic nurses doing it), and I just hate the thought of him suffering through the needle sticks again. I won't necessarily know where to put the lidocaine cream since it will depend on where they can find a good vein. I guess if I have to, I'll bring the cream with me and after they find a good vein, I'll put the cream on and wait for the hour it takes to numb the site. But even though it makes me nervous, getting his port out is yet another step toward "normalcy"!
In earlier posts I mentioned another little fighter, Conner, who was treated at Penn State Hershey Children's Hospital and then at CHOP. Conner received his angel wings on September 4 with his parents by his side. Please keep his family in your prayers as they grieve and try to carry on without their beloved son. Also remember the families of some other little fighters who have earned their wings in the last week: Lennon, Layla, Gabby, and Faith. Fly high sweet angels!
Collin had his latest clinic appointment today. He was waving and saying hi to all of the wonderful clinic staff, and even answered a few simple questions. Part way through the doctor's exam, Collin decided he was ready to leave, and started crying "go go go go go!" He drew a small crowd of doctors and nurses because they're not used to hearing him cry much. The doctor told Collin he would make the exam quick, and in the midst of his screaming he opened his mouth and said "Ahhh" or pointed to where the stethescope should go just like the doctor asked. It really was kind of funny. Then it was time for his blood draw, and (thanks to lidocaine cream) he sat still and didn't cry or flinch as the port was accessed. He's always such a trooper! I was excited to learn that he has gained another quarter of an inch in height since his last visit on August 15. He is also scheduled for surgery on October 14 to have his mediport removed. After the port is out, he'll have to go to the lab for bloodwork (instead of the awesome clinic nurses doing it), and I just hate the thought of him suffering through the needle sticks again. I won't necessarily know where to put the lidocaine cream since it will depend on where they can find a good vein. I guess if I have to, I'll bring the cream with me and after they find a good vein, I'll put the cream on and wait for the hour it takes to numb the site. But even though it makes me nervous, getting his port out is yet another step toward "normalcy"!
Friday, September 2, 2011
Friday, September 2, 2011
This week has been a busy one! We survived hurricane Irene; we had no power for about eight hours, but due to the generator we bought a few years ago after finishing the basement, we were barely inconvenienced. Thankfully we didn't even need to use it to power our sump pumps. The power outage caused Neya's school to be closed Monday, so her first day of second grade was delayed a day. She is now happily settled into school, and loves her new teacher. I think she'll have another good school year!
Monday was a big day for Collin; he had his very last dose of chemo! God willing, he will never need chemo again! I'm a little nervous because I now I feel like we're not actively waging war against the beast, and I don't want it to ever come back. However, it's nice to not be giving him the measured doses of poison that along with killing cancer cells have also dried out his skin and caused irritability, nausea, constipation, and many other nasty side effects.
I have taken Collin to two Kindermusik classes since my last update. The first week, he didn't want to take off his sunglasses (usually he doesn't keep them on!) and he sat on my lap and buried his face against me. But as the class went on and I participated, I slowly turned him around so he could see what we were doing. By the time the teacher read a book to the kids, Collin got off my lap and sat down right in front of the book, and was pointing to the pictures! By the end of the class, he was having a good time. During the second class, he participated the whole time, singing, dancing, and playing instruments to the best of his ability. It brought tears to my eyes to watch him having so much fun, because I remember where he was a year and a half ago. He's come such a long way since then!
The eye surgery that Collin had in March to straighten his eyes has not worked the way we expected it to. At some point during the tumor resection in April of 2010 and the increased pressure in his brain in the days following the surgery, damage was done to the sixth nerve that controls the lateral rectus muscles of the eyes (the muscles that pull the eyes outward). In March of this year, the pediatric ophthalmologist at Hershey (Dr. W) performed surgery to weaken the medial rectus muscles (the muscles that pull the eye inward) in order to give the lateral rectus muscles a chance to pull the eyes outward with no resistance. Following the surgery, Collin's eyes turned outward a little, but not as much as we had hoped, and now his eyes have turned inward again. To further try to correct the position of the yes, Dr. W is recommending two more surgical procedures. In the first one, he would tighten the lateral rectus muscles so they would pull the eyes outward, and he could also try to further weaken the medial rectus muscles so they are pulling the eyes inward even less. However, in the end, he doesn't feel Collin's eyes will be as straight and mobile as we would like. In the second procedure, he would move the muscles that pull the eyes up and down over to a lateral position so they pull the eyes outward instead of up and down. His eyes would still have some up and down movement, but still wouldn't have as much side to side movement as he would have normally.
Last week we took Collin for a second opinion to the pediatric ophthalmologist (Dr. F) who sent him for the MRI that showed his tumor in 2010. After examining Collin and reviewing his records, Dr. F does not feel that doing the first of the two procedures mentioned above will benefit Collin at all. He feels that at this point, since there has been no improvement in the sixth nerve, that the lateral rectus muscles that pull the eyes outward are esentially dead, and moving them forward on the eyeball will not help them pull the eyes outward. He feels that the best option for improving the alignment of Collin's eyes is the second procedure recommended by Dr. W. However, Dr. F explained that there are some major risks involved with the surgery. The muscles that move the eyes up and down also supply the bloodflow to the front of the eyeball. Removing the blood supply during the surgery to move the muscles can cause inflammation, glaucoma that is extremely difficult to treat, and even blindness. He recommends a blood vessel sparing surgical technique to reduce the risk to Collin's sight. However, there are very few surgeons that perform the surgery using the blood vessel sparing technique.
Dr. F also discussed the option of doing nothing further to Collin's eyes at this time. He said nothing would be lost if we were to wait, and that any surgery could be performed at a later time. Collin has learned to compensate well enough that he has functional vision at this time, although it is nowhere near ideal. Perhaps different surgical techniques will be invented or perfected in the future that would reduce the overall risk to Collin's sight.
Monday was a big day for Collin; he had his very last dose of chemo! God willing, he will never need chemo again! I'm a little nervous because I now I feel like we're not actively waging war against the beast, and I don't want it to ever come back. However, it's nice to not be giving him the measured doses of poison that along with killing cancer cells have also dried out his skin and caused irritability, nausea, constipation, and many other nasty side effects.
I have taken Collin to two Kindermusik classes since my last update. The first week, he didn't want to take off his sunglasses (usually he doesn't keep them on!) and he sat on my lap and buried his face against me. But as the class went on and I participated, I slowly turned him around so he could see what we were doing. By the time the teacher read a book to the kids, Collin got off my lap and sat down right in front of the book, and was pointing to the pictures! By the end of the class, he was having a good time. During the second class, he participated the whole time, singing, dancing, and playing instruments to the best of his ability. It brought tears to my eyes to watch him having so much fun, because I remember where he was a year and a half ago. He's come such a long way since then!
The eye surgery that Collin had in March to straighten his eyes has not worked the way we expected it to. At some point during the tumor resection in April of 2010 and the increased pressure in his brain in the days following the surgery, damage was done to the sixth nerve that controls the lateral rectus muscles of the eyes (the muscles that pull the eyes outward). In March of this year, the pediatric ophthalmologist at Hershey (Dr. W) performed surgery to weaken the medial rectus muscles (the muscles that pull the eye inward) in order to give the lateral rectus muscles a chance to pull the eyes outward with no resistance. Following the surgery, Collin's eyes turned outward a little, but not as much as we had hoped, and now his eyes have turned inward again. To further try to correct the position of the yes, Dr. W is recommending two more surgical procedures. In the first one, he would tighten the lateral rectus muscles so they would pull the eyes outward, and he could also try to further weaken the medial rectus muscles so they are pulling the eyes inward even less. However, in the end, he doesn't feel Collin's eyes will be as straight and mobile as we would like. In the second procedure, he would move the muscles that pull the eyes up and down over to a lateral position so they pull the eyes outward instead of up and down. His eyes would still have some up and down movement, but still wouldn't have as much side to side movement as he would have normally.
Last week we took Collin for a second opinion to the pediatric ophthalmologist (Dr. F) who sent him for the MRI that showed his tumor in 2010. After examining Collin and reviewing his records, Dr. F does not feel that doing the first of the two procedures mentioned above will benefit Collin at all. He feels that at this point, since there has been no improvement in the sixth nerve, that the lateral rectus muscles that pull the eyes outward are esentially dead, and moving them forward on the eyeball will not help them pull the eyes outward. He feels that the best option for improving the alignment of Collin's eyes is the second procedure recommended by Dr. W. However, Dr. F explained that there are some major risks involved with the surgery. The muscles that move the eyes up and down also supply the bloodflow to the front of the eyeball. Removing the blood supply during the surgery to move the muscles can cause inflammation, glaucoma that is extremely difficult to treat, and even blindness. He recommends a blood vessel sparing surgical technique to reduce the risk to Collin's sight. However, there are very few surgeons that perform the surgery using the blood vessel sparing technique.
Dr. F also discussed the option of doing nothing further to Collin's eyes at this time. He said nothing would be lost if we were to wait, and that any surgery could be performed at a later time. Collin has learned to compensate well enough that he has functional vision at this time, although it is nowhere near ideal. Perhaps different surgical techniques will be invented or perfected in the future that would reduce the overall risk to Collin's sight.
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