We are still delighted to report that all is well on the home front for our family's health issues. Though the conditions will be ongoing all are stable at this time and look to be remaining so for the future.
Blessings abound and its a wonderful spring in our neck of the woods. I urge anyone still undergoing medical treatments to take hope in a wondrous spring that God has provided and look forward to a wonderful life no matter what trials are thrown your way.
Wednesday, April 15, 2009
Friday, December 5, 2008
Updates
We've been doing great health wise in dealing with our various familial diseases.
About 2 weeks ago our oncologist called us to let us know that the researchers have come up with a test for the Familial Neuroblastoma. The hope is that the family members that are of childbearing age will be able to take this test and see if they will be able to pass it along to their children. If so then they can have an amniocentesis during the pregnancy to see if the child a. has the disease, or b. is a carrier. Modern medicine is fantastic.
The sad part about this test is that without insurance the cost is prohibitive at $4,000 per test!!! Please pray with us that our older daughter will be able to procure the medical insurance to take this test prior to her marriage slated for July 2009.
About 2 weeks ago our oncologist called us to let us know that the researchers have come up with a test for the Familial Neuroblastoma. The hope is that the family members that are of childbearing age will be able to take this test and see if they will be able to pass it along to their children. If so then they can have an amniocentesis during the pregnancy to see if the child a. has the disease, or b. is a carrier. Modern medicine is fantastic.
The sad part about this test is that without insurance the cost is prohibitive at $4,000 per test!!! Please pray with us that our older daughter will be able to procure the medical insurance to take this test prior to her marriage slated for July 2009.
Friday, April 18, 2008
Final Results
Yay!!!! We got the final results yesterday afternoon. I have been so busy calling friends and family that I am just now getting back to this to update.
There is no evidence of disease (NED) and she is considered 5 years free of Cancer now! We don't have to go back for 1 year and unless there is a concern or question after her lab work we won't have to have scans.
Now all we have to continue to deal with for her is the Addison's Disease. This will be ongoing but is very manageable.
Thank you all for your prayers and Blessings to all of you!
There is no evidence of disease (NED) and she is considered 5 years free of Cancer now! We don't have to go back for 1 year and unless there is a concern or question after her lab work we won't have to have scans.
Now all we have to continue to deal with for her is the Addison's Disease. This will be ongoing but is very manageable.
Thank you all for your prayers and Blessings to all of you!
Wednesday, April 16, 2008
Preliminary Results
Well, we are back home again. The first day of testing went relatively easily. The only glitch was we lost the first IV during insertion and had to take a short break and repeat the process and she had to have the IV in her hand which was not okay with her at all. After a few tears she finally accepted the fact that it was there for a short time. The IV was rather finicky during the 2 procedures that required it and it was very positional for giving the required dyes during the procedures. Thankfully it was able to be removed that afternoon and we were off for a wonderful afternoon of fun.
We went to lunch and then checked in at our hotel. We spent about an hour in the pool and then dried off and took our daughter to see Horton Hears a Who which we all enjoyed and got a lot of great laughs out of. Then it was off to dinner, after dinner we realized we had forgotten a book to read before bed so that was a great excuse to stop in at a local book store and purchase a new book. Then it was a short walk back to our hotel where our princess quickly donned her jammies and was read her new book. She was fast asleep moments after "THE END" and slept for almost 12 hours.
Today we had the final scan and the preliminary results look great. If the final results are great we won't have to repeat our visit for a year and the best news of all is that we are now officially 5 years off treatment and unless something looks out of place we should not have to repeat scans again! WHOOOOO HOOOOOOO!!!!!!!!!!!
We went to lunch and then checked in at our hotel. We spent about an hour in the pool and then dried off and took our daughter to see Horton Hears a Who which we all enjoyed and got a lot of great laughs out of. Then it was off to dinner, after dinner we realized we had forgotten a book to read before bed so that was a great excuse to stop in at a local book store and purchase a new book. Then it was a short walk back to our hotel where our princess quickly donned her jammies and was read her new book. She was fast asleep moments after "THE END" and slept for almost 12 hours.
Today we had the final scan and the preliminary results look great. If the final results are great we won't have to repeat our visit for a year and the best news of all is that we are now officially 5 years off treatment and unless something looks out of place we should not have to repeat scans again! WHOOOOO HOOOOOOO!!!!!!!!!!!
Monday, April 14, 2008
Scans
Well, its that time again, Our daughter has bi-annual scans for her medical condition (see related articles on Neuroblastoma, Living with a child with cancer and other links.).
Starting the day before testing we have to give our daughter some protective iodine drops that protect her thyroid from the damaging effects of the Radioactive Iodine dye that will be injected into her little body.
This year they are doing things a bit differently but its still very traumatic for all of us. We have to be at the clinic, which is an hour and a half away, by 9:30 am on Tuesday morning. We will be "prepped" for an IV (they give her emula cream which numbs her arm prior to the insertion of the IV) and then they will draw the lab work and weigh her and such. Then we are off for a CAT scan. She is very good for that part.
After the CAT scan we will wait for Nuclear Medicine to call us and she will go back and they give her a radioactive injection. The injection (through her IV thankfully) turns her red from her toes to her nose and she will frequently vomit as the Radioactive Iodine goes through her system.
Then its off for an ECHO and and EKG. She hates it when they remove the pads on her skin that connect the leads, I don't blame her! It hurts!
After that we go and wait in clinic to see the doctor and get preliminary results for that days tests. Sometimes we have to wait for several hours as the results are compiled.
If all goes well we get the IV removed then and have to return the following day for the most important test, an MIBG. The Radioactive dye from the previous day has by now gone all through her system and it lights up ANY cancer cells. Our daughter has to lie still on a table for over an hour for this test (we do not sedate her for these as that would mean leaving the IV in overnight and its a pain to do that). Our daughter gets to pick out a video to watch during this test. We sit close and hold her hand and remind her to remain still. The machine is similar to a CAT scan machine and it shows a negative image on a computer screen. The scariest part of this test is that if the cancer has returned, we can see it immediately on the screen. This is basically our preliminary results as we won't get final results until the following week when the doctor calls us back.
Providing all goes according to plan this might be our last scans. This puts us 5 years into remission and our doctor is debating whether or not we need to continue this regimen or if we just need annual lab work. Since our daughter is the 6th case of this type of cancer in our family we have extended the testing longer than normal.
Please keep us in your prayers this week and I will update this blog with our preliminary results as soon as I am able. Thank you all and May God richly bless each and every one of you!
Starting the day before testing we have to give our daughter some protective iodine drops that protect her thyroid from the damaging effects of the Radioactive Iodine dye that will be injected into her little body.
This year they are doing things a bit differently but its still very traumatic for all of us. We have to be at the clinic, which is an hour and a half away, by 9:30 am on Tuesday morning. We will be "prepped" for an IV (they give her emula cream which numbs her arm prior to the insertion of the IV) and then they will draw the lab work and weigh her and such. Then we are off for a CAT scan. She is very good for that part.
After the CAT scan we will wait for Nuclear Medicine to call us and she will go back and they give her a radioactive injection. The injection (through her IV thankfully) turns her red from her toes to her nose and she will frequently vomit as the Radioactive Iodine goes through her system.
Then its off for an ECHO and and EKG. She hates it when they remove the pads on her skin that connect the leads, I don't blame her! It hurts!
After that we go and wait in clinic to see the doctor and get preliminary results for that days tests. Sometimes we have to wait for several hours as the results are compiled.
If all goes well we get the IV removed then and have to return the following day for the most important test, an MIBG. The Radioactive dye from the previous day has by now gone all through her system and it lights up ANY cancer cells. Our daughter has to lie still on a table for over an hour for this test (we do not sedate her for these as that would mean leaving the IV in overnight and its a pain to do that). Our daughter gets to pick out a video to watch during this test. We sit close and hold her hand and remind her to remain still. The machine is similar to a CAT scan machine and it shows a negative image on a computer screen. The scariest part of this test is that if the cancer has returned, we can see it immediately on the screen. This is basically our preliminary results as we won't get final results until the following week when the doctor calls us back.
Providing all goes according to plan this might be our last scans. This puts us 5 years into remission and our doctor is debating whether or not we need to continue this regimen or if we just need annual lab work. Since our daughter is the 6th case of this type of cancer in our family we have extended the testing longer than normal.
Please keep us in your prayers this week and I will update this blog with our preliminary results as soon as I am able. Thank you all and May God richly bless each and every one of you!
Wednesday, March 19, 2008
Reiter's Syndrome
Reiter's Syndrome, also known as Reactive Arthritis, is a unique form of arthritis. My older daughter suffered from this and has permanent damage to one of her fingers as a residual affect from this rare form of arthritis.
To the right I have written an article detailing more on Reiter's Syndrome and its treatment.
To the right I have written an article detailing more on Reiter's Syndrome and its treatment.
Wednesday, February 27, 2008
Upcoming Topics
I have several topics up and coming in this blog in the next several weeks. My younger daughter will be going in for scans in April and I will detail how those are done. I will also be adding Reiter's Syndrome which is another form of arthritis that is rarely mentioned which my oldest daughter has struggled with over the last several years.
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