We found out on Friday, March 14 that Tux Man has a tumor growing in his spinal canal, in the space where his spinal cord is supposed to be. (The spinal cord is being majorly pinched by the tumor.) If you want to read about the medical saga that has led us to this point, check out http://afrenziedmind.blogspot.com/2014/03/on-finding-out-that-i-have-tumor.html.
Here are the updates I have sent out so far (most recent is at the top):
UPDATE Tuesday, 3/25/14:
I just finished talking to the surgeon, and it went REALLY well.
(I am also having the worst technology day I've had in years, so my apologies for problems in news getting out. Please share with others who are interested!)
The tumor came out almost in one piece. The monitoring of his nervous system was solid and clear the entire time. That doesn't guarentee anything, because sometimes the monitors are wrong, and we won't know for sure until he wakes up in several hours, but the monitoring was "rock solid" the entire time (in the surgeon's words).
What's more, Tux Man's spinal cord was really, really flattened before she removed the tumor, but it was already starting to lift up into a more normal shape as she completed the surgery. This means that the chances of his symptoms improving are very, very good.
When she was sewing up the sack around the spinal cord, that holds the spinal fluid, there was a small hole from the needle they use to sew it up. It would be counter productive to try to repair that separately, so they will have him stay completely horizontal for 36-48 hours instead of 24. That was the only problem the entire time.
The tumor looked like a classic schwannoma, which is also very, very positive. There was clearly a nerve going in one end of the tumor, and on the other end the tumor followed a nerve a little way away from the spinal cord. They can't really follow down the nerve to chase down the very end of the tumor, but she said that the place where she cut the nerve to remove the tumor looked almost normal. In a typical case, chances of regrowth would be around 10%, but it is so slow growing that it would take a decade or two before we have to worry about it again. In our case, because everything went so well, the chances of regrowth are even lower. They will monitor him with MRIs probably for the rest of his life, with several in the first year and less after that.
The most likely complication at this point is that frequently with a surgery like this, the digestive system can stop working for awhile, especially since he will be horizontal for a few days. We will have to watch for this.
This last few hours has been one of the most intense experiences of my life. I tried to distract myself, even by leaving the hospital for a bit, but the entire time my mind was here. I don't think I have ever prayed so long and hard in my life. Thank you SO MUCH to everyone who has been praying for us. We still have challenges ahead of us as Tux Man enters recovery, and then comes home to our house full of stairs, and as I try to care for both him and our baby. I am so grateful for your love and support. Thank you.
UPDATE Monday, 3/24/14:
Tux Man's surgery will be at 8 am tomorrow morning. I am so grateful for all the prayers, and the offers for help! I haven't figured out plans for Wednesday yet, but I hope to do that later tonight. For now, we're going to go eat dinner together and spend some time as a family.
Here is the help planned for the next 24 hours. Thank you!
Tomorrow I have someone to help me with Wiggles at the hospital before the surgery, and my father in law will be there with me near the end of the surgery and throughout the afternoon. He can stay overnight with Tux Man (presuming he doesn't have to be in the ICU; normally for this surgery he would be, but they think he is young enough and healthy enough that he won't have to be. I hope that they are correct, and that he can go directly to acute care and skip the ICU). I also have someone to call my older children and make sure they are out of bed on time, and to give Snuggle Puppy and his cello a ride to orchestra, and to give Turtle a ride to school if she doesn't leave in time to walk. Also, a sister in law of mine will pick up the kids from school and stay with them throughout the afternoon and evening.
I think someone is bringing dinner, but I'm not certain and since my kids and sister in law are quite able to cook and there is plenty of food in the house, I'm not worrying about it. I expect to still be at the hospital well past dinner time, as long as I can keep my baby happy enough to stay.
Last night we got Wiggles to take a bottle. (At first he absolutely refused, and it took inspiration to figure out how to persuade him.) I've realized that the reason giving my baby a bottle is so hard for me is my own pride, pure and simple. I hope to have the humility to give him one when we really need to - and I hope and pray that we will almost never need to. Fortunately, since I've been pumping to donate for NICU babies, we have plenty of milk for him in the freezer if we need it.
The current status is that Tux Man will have surgery Tuesday morning to have pieces of two vertebrae removed so that they can access the spinal canal, where the tumor is growing. They will then remove the tumor, which will probably include cutting the nerve where the tumor began growing. This means some permanent numbness, but hopefully it will be less numbness and significantly less pain than Tux Man is currently experiencing. There is great risk of permanent paralysis from the chest down, but that risk is almost certain if he doesn't have the surgery.
UPDATE Thursday, 3/20/14:
I hope it is better to send you a really long update, instead of spamming you with lots of little ones, because this is definitely a looooonnnnnngggg update! Below are a Summary, More Details, and How to Help.
Tux Man's surgery will be on Tuesday, March 25, probably in the morning, up at the University Hospital. He will probably spend 3-4 days in the hospital.
We were going to bless Wiggles on Sunday, March 30. THE BLESSING DATE HAS MOVED TO MARCH 23. The time is still 11 am, and there is still lunch at 2 pm at our house. We are planning a family fast for that weekend to end with the lunch; you are welcome to join us in fasting as well, if you wish.
The tumor is smaller than we imagined - it's probably the size of a large marble. It is in the spinal column, and in one place, it takes up about 90% of the space in there (space that is supposed to be reserved for the spinal cord), so it's obvious why Tux Man has had such trouble from it. Because it has been getting progressively worse, they are doing surgery to keep it from getting any worse yet. In order to reach the tumor, they need to do a Laminectomy (http://en.wikipedia.org/wiki/
File:Laminectomy.jpg for a picture of a vertebra) on two vertebrae. They will not replace the removed part of the vertebra with anything. Apparently the muscle and ligaments covering the spine are sufficient to compensate for the bones they will remove.
Tux Man's symptoms will likely get at least a little better, but they may not get a lot better, and it's possible they won't get better at all. They specified that they can't tell us if it will get better, or how much, or how quickly. Most people get “better” - meaning, better than they were before, but maybe not completely well again. The spinal nerve is very good at compensating for pressure on it - it's very resilient - but by the same token, it takes time to go back to normal when pressure is taken off of it like that. He should expect roughly a year's recovery to get back whatever he's going to get back (i.e. having the pain and numbness disappear from his legs). The doctor will most likely have to cut the nerve where the tumor was growing, and remove the section of it where that was happening, so she told Tux Man to expect a permanent band of numbness around his chest.
After the surgery, he will need a couple of weeks off of work, and he needs to not push, pull, or lift anything over 5 lbs for a month. (Wiggles is a little over 13 lbs.)
We were given LOTS more information at the appointment, so if you think of questions, please feel free to ask! You may think of things we forgot to ask, so we appreciate your input.
Many of you have asked HOW TO HELP, and this is my brain splurt on the subject:
I expect to basically go to the hospital twice a day - once during the school day, with taking Wiggles with me, and again in the evening with all three. They (Turtle and Snuggle Puppy) probably need to spend no more than an hour or two a day at the hospital, but I would like to be with Tux Man longer than that after 3 pm if I can be. Thus, if someone can pick them up and take them home, I will be able to stay longer. Otherwise I’ll just need to come home with them.
I’m only attempting to plan through Friday at this point, but here is the help I am imagining I can use. (I’ve never done this before! If you think I don’t need something on this list, or you think I do need something else, please tell me! I am seriously making this up as I go along.)
BABYSITTERS: Please back out if you or anyone in your house is sick! We will be more okay healthy and without help than if any of us get sick!
- Tuesday morning, March 25: Someone to get kids to school in the morning and keep Wiggles until Tux Man is into surgery, at which point they can bring Wiggles to me or I can come get him
- Tuesday afternoon, March 25: Someone to pick up Turtle, and maybe hang out with her and Snuggle Puppy throughout the afternoon, dinnertime, and evening (they are old enough to be fine on their own, but I imagine they might be a bit stressed that day
- Tuesday (Time to be guestimated on Monday evening, when we know what time surgery will be for sure), March 25: Someone to be with me near the end of surgery, especially to help with Wiggles when the surgeon comes out to tell me how it went, because I really want to give her 100% of my attention at that moment
- Tuesday afternoon evening - someone to babysit my baby while I stay with Tux Man as he is waking up
- Wednesday, Thursday, and Friday - if it works out, someone to pick up the kids from the University Hospital and take them home, probably at different times each night but usually between 6 and 8 pm
- Someone to babysit Wiggles for 2 hours each night, Wednesday, Thursday, and Friday (again, if it works out)
- Dinner on Tuesday, Thursday and Friday - The kids can’t see Tux Man until Wednesday afternoon, so I’m hoping to bring them in for a short visit, then take them to dinner in the hospital cafeteria, then take them back for another short visit before they head home
So… Improvements? Suggestions? And please, keep the prayers coming! Thank you!!!!!
UPDATE Wednesday, 3/19/14: They called this morning and moved his consultation appointment to 11 am tomorrow (Thursday) instead of Friday. We are grateful, because the numbness and stiffness/difficulty moving seems to be continuing to spread up his body, and is beginning to effect his torso and arms.
We are praying for Dr. Bisson, that she will have clear vision and steady hands and thus be able to remove the entire tumor without complications. We are also praying that it will not grow any more before the surgery, and that there is not any permanent nerve damage once the tumor is out.
I am worried about what to do with our baby during surgery and while Tux Man is in the recovery room. Also, when surgery happens, I am hoping someone in our extended family can come stay with our older kids. (Any volunteers?)
UPDATE Tuesday, 3/18/14: We have an appointment Friday morning at 8 am with Dr. Erica Bisson http://healthcare.utah.
edu/fad/mddetail.php? physicianID=u0577670. At that appointment we will "discuss options" and presumably set a date and time for the surgery. Dr. Bisson operates at the University Hospital.
SUMMARY Friday, 3/14/14:
For the last 15 month, my husband has been struggling with pain and numbness in his lower body. Last Friday (Mar 14) we had (another) MRI, with contrast, of his upper spine and brain. They found a tumor at the T7 vertebra; they think it is a schwannoma (it is large, and probably slow growing and benign). As we looked at the MRI pictures with our un-trained eyes, if we are reading it correctly, the tumor is about as tall as the vertebra itself. They think it started in the sheath of a peripheral nerve and is growing into the spine. The doctor who called with the MRI results Friday afternoon (Dr. Summer Gibson) said that he would probably need to have surgery within two weeks; we will meet with the neurosurgeon up at the University Hospital on Friday morning, so we're guessing that by Friday afternoon we will have a time scheduled for the surgery. The doctor who read the MRI was very positive about the prognosis, however, and all of the research we've done online indicates that the surgery is likely to be very effective at relieving all of the symptoms he has been struggling with.