It's Just Benign: Connecting Benign Brain Tumor Survivors Everywhere
Frustration!!!
We have decided to go the route of surgery. We have had 3 opinions given and two are that surgery will inevitably have to be done and sooner will be better than later. So we thought we were going in next Thursday, but now another specialist has been consulted and we will need to accommodate his schedule as well. He has more experience in the surgery my son will have, so it is good to have him, but frustrating that the date might need to change again. Crossing our fingers that it will be as close to the 12th as possible for our sanity! Sorry, I just needed to vent!
Views: 163
Replies to This Discussion
-
Permalink Reply by Ann Manzi on -
Hang in there and have faith. You want to feel that your route is the one you feel is right. Forget the time frame and focus on the correct answers you need to decide whether surgery is necessary. Best of luck. Wishing your son the strength to shoulder this huge bolder of life. Will be praying for him. ann
-
Permalink Reply by John on -
Hi Jennifer,
As Ann and you mentioned, if delay means that your son will have the best possible treatment, then it will be worth it. However, it's understandable the frustration to have things delayed especially because you want your son have as normal a routine as possible by trying to avoid having him miss the start of school.
When my radiation therapy was delayed, I felt frustrated too because I was going to miss my target date of returning to work. However, I did find myself having a chuckle when asking myself, why am I so mad about delaying having my brain be irradiated??? For me, the frustration was just the result of everything, and just another thing that felt out of my control and that moved me further away from my old normal. Not having control is an unnerving feeling.
-
Permalink Reply by Mary Bedford on -
Jennifer, I have been praying for your son and family since read your first post about his condition, even though I didn't post a response at time. You have explored all options and will make the best possible decision for him. Delays are frustrating, especially once a decision is made, but to the the expertise and skill of the additional surgeon will be worth it. Best wishes to all of you. please continue to keep us posted.
-
Permalink Reply by Jennifer Kincaid on
-
Thank you everyone for your thoughts, comments, prayers, etc. They really are appreciated more than you know. It's very surreal sometimes when you stop and think that this is actually happening. Sometimes we get caught up in the momentum of everything and don't realize this is really happening. It can become very overwhelming.
I do learn lessons everyday. I have always said I believe everything happens for a reason, and I really do. But when I struggle to see the "big picture" or things are progressing the way I perceive they should I loose sight of that belief. A friend recently told me that I have this belief and hand things over to God, but when he's not doing things "right" I want to take control back. Well, this has certainly been my test lately!
My son had his consultation with the new neurosurgeon the other day and it was a very reaffirming trip. He agrees with what has been in our hearts all along, that this is something that needs to be taken care of before it has a chance to cause him any problems since it hasn't caused any yet. The fact that there have been no symptoms yet is the very reason we believe the other doctor has been "dragging her feet", hence leaving us feel so frustrated. He stated that time is now of the essence and wants to move quickly, confident that Jackson will come out of this fine. He said surgery will happen next week so that Jackson will have enough time to recover before returning to school. So, all is better and I'm feeling a little less anxious. I just wish that the other doctor would have just come out and expressed her doubt about her ability to handle this case and referred us to the new doctor who specializes in this surgery in this part of the brain earlier. Surgery would have happened weeks ago and he would have had even more time to recover before school.
Have I learned by lesson about patience and trusting a higher power, I'm not sure, but at least I know that I am supposed to be working on it :-)
-
Permalink Reply by Jennifer Kincaid on
-
Hi everyone. My son, Jackson, had his tumor resection this past Thursday, July 19th. The doctors were amazing. The procedure took about 4 1/2 hours to complete. He spent a little over 24 hours in the pediatric ICU and then then almost 48 hours in the regular pediatric wing. We are home now and he is doing remarkably well. We are so blessed that he seems to have no impairment of any kind as a result of the surgery. He is on Keppra as a precautionary treatment, but very low dose, and we think it is only temporary as long as he does not show seizure activity. Post-op and staple removal is scheduled for the 30th. Thank you all for your insights, input, and support through our journey of deciding on treatment and leading up to the surgery. This site is a wonderful resource and refuge. So happy to have found it and you all.
-
Permalink Reply by Mary Bedford on
-
So very glad that surgery went well and that he is doing so well with the recovery so far. What an answer to prayer and I'm sure that you are all so relieved. Kids are so resilient and I'm sure he will bounce back quickly and soon the problem will be keeping him from doing too much, too soon. What did the biopsy show, if you'd be wanting to share that? Please continue to keep us updated. Blessings to you all
-
Permalink Reply by Ann Manzi on
-
Jennifer Kincaid said:Hi everyone. My son, Jackson, had his tumor resection this past Thursday, July 19th. The doctors were amazing. The procedure took about 4 1/2 hours to complete. He spent a little over 24 hours in the pediatric ICU and then then almost 48 hours in the regular pediatric wing. We are home now and he is doing remarkably well. We are so blessed that he seems to have no impairment of any kind as a result of the surgery. He is on Keppra as a precautionary treatment, but very low dose, and we think it is only temporary as long as he does not show seizure activity. Post-op and staple removal is scheduled for the 30th. Thank you all for your insights, input, and support through our journey of deciding on treatment and leading up to the surgery. This site is a wonderful resource and refuge. So happy to have found it and you all.
-
Permalink Reply by Ann Manzi on
-
Ann Manzi said: I can't express how happy I am for your son and you. Life is good and to know your son was given a second chance is a blessing...... wishing Jackson a speedy recovery. Stay in touch. In friendship, ann
Jennifer Kincaid said:Hi everyone. My son, Jackson, had his tumor resection this past Thursday, July 19th. The doctors were amazing. The procedure took about 4 1/2 hours to complete. He spent a little over 24 hours in the pediatric ICU and then then almost 48 hours in the regular pediatric wing. We are home now and he is doing remarkably well. We are so blessed that he seems to have no impairment of any kind as a result of the surgery. He is on Keppra as a precautionary treatment, but very low dose, and we think it is only temporary as long as he does not show seizure activity. Post-op and staple removal is scheduled for the 30th. Thank you all for your insights, input, and support through our journey of deciding on treatment and leading up to the surgery. This site is a wonderful resource and refuge. So happy to have found it and you all.
-
Permalink Reply by Jennifer Kincaid on
-
Thanks so much Ann! We are very blessed!
-
Permalink Reply by Jim Perakis on -
Great to hear that your son's surgery went well and that there were no immediate post surgery problems. Can you tell me why the surgeon recommended sooner rather than later? How is he doing now? There seem to be so few people who have undergone this type of surgery and not have at least some period of fatigue, cognitive problems or headaches. I hope he has fully recovered and back to a normal life. Best wishes.
© 2013 Created by Beth Rosenthal.
Powered by
