Updated posted by Jennifer Willard 22 hours ago
We were gone all day yesterday...
We were gone all day yesterday for Roy's neurocogntive testing. They said everything looks fine, it looked just as they thought it would. So now on Wednesday he goes for his PET scan, and I guess as long as nothing new or suspicious shows on that, we can proceed with the surgery. The doctors are dotting their I's and crossing their T's which is fine with me, I want them to be completely prepared before they start operating on my husband's brain. They are still shooting for the 22nd for the probes and the 29th for the resection. He has been having more of those break through left side seizures (the ones where his whole left side goes numb and it jerks and twitches)
Freaked out a little yesterday evening. Breanna and Cheyenne were playing around in the house and somehow Breanna fell out of a dining room chair and it fell on her. I was in my bedroom folding clothes, and she comes in there crying holding her head. Yep, there was a HUGE knot, and it was on her right side between her eye and ear, right on that bad side of her face. The side that has the plexiform neurofibroma the side the doctors told us to be careful of. I called my friend a few houses down who is a nurse and she walked down to look at it. We put a bag of corn on it (didn't have a ice pack) and gave her some ibuprofen, and that helped. I just checked on her a few minutes ago and it looks a lot better than it did last night. I think I am going bubble wrap her and Roy.
Updated posted by Jennifer Willard 7 days ago
So Dr. Hadar's (neurosurgeon)nurse called today...
So Dr. Hadar's (neurosurgeon)nurse called today and it looks like this is the tentative schedule. They want him to come in on January 14th for a pre-op visit and at that time we will get answers for all of our questions. Then on January 22nd they will start the Phase II testing. This is where he will go into the operating room and they will placed the EEG probes directly on his brain. He will then go into the Neuro ICU for 24-48 hours and once he is stable be moved to the neuro floor. He will then be monitored until the 29th, on that date he is scheduled for his actually tumor resection. The nurse had said he could be in the hospital 2-3 weeks. I am not sure if she means total time or recovery time after the resection.
Next week he has a few appointments at UNC that have to be completed before they proceed. This has been a long process between the chemotherapy, endless doctors appointments and hospital stays, daily seizures and blackouts, and the vast amount of medication he takes. I know that this will not prolong his life, but hopefully it will give him a better quality of one. I know this has to be scary for him, because I am scared to death. It is so hard seeing him go through this, and what it has robbed him of. Also it is incredibly hard on the girls, please keep them in your prayers. They have already been through so much, Breanna especially, now they are watching their dad battle this... Please pray for my husband, my daughters, and that God will give me the strength to hold it together for all of them.
Please continue to pray for our family.
Updated posted by Jennifer Willard 15 days ago
I hope everyone has a joyful...
I hope everyone has a joyful Thanksgiving. My parents are on their way here from Florida to spend it with us. They are brining my 9 year old nephew, so the girls are super excited. It will be nice to spend Thanksgiving with them. Its been about 5 months since I saw my parents (they were up here in June for Breanna's birthday) and about 2 years since I saw my nephew.
Roy heard from one of his doctors today.. Shin, Hin, Wu, Hadar, Chestnut.. What a combination of names! but anyway, Dr.Shin's assistance called and said she has got Roy set up for the neuropsychological evaluation and a PET scan for December 9th and then on December 12th an appointment with a neuro opthamologist. After that his doctors will meet again and see when they can get the Phase 2 testing scheduled, it will all depend on the neurosurgeon's schedule and when a bed is available in the EMU floor. I guess this may happen this year, I hope though that they can push it off to January. I am still not sure of the details of the actually tumor resection. I dont know if they will do the Phase 2 and the surgery in the same time frame, or if they will do the Phase 2, keep him for the 10-14 days, send him home and then bring him back at a later date for the surgery. We will find out more information when we talk to the surgeon.
Please continue to keep my family in your thoughts and prayers. These next few weeks and months are going to be very scary.
Created by Jennifer Willard on March 13, 2013
Have Questions? Contact the organizer of this campaign now:Contact
Recent Donations (38)
$2,660 raised by 38 people in 9 months.
3 days ago
4 days ago
4 days ago
4 days ago
5 days ago
14 days ago
16 days ago
16 days ago
16 days ago (Monthly Donation)
16 days ago
1-10 of 38 donationsNext