Jul 27, 2017 Latest post:
Mar 27, 2018
Tom's journey began on Wednesday, April 19th, 2017. He had been having bad headaches for a couple of weeks prior to then and getting worse as days went by. He had also been tired, had trouble concentrating, felt dizzy and a lot of pressure in his head. On April 19th, I (Beth) was working and texted Tom to see how he was feeling and I could tell by his responses that he was pretty bad. I ran home from work and his headache was so severe, he could barely lift his head off of his pillow, so I said that I was taking him into the ER and he didn't put up any kind of argument at all, so I knew he was hurting badly. They did some tests, including a CT scan, and they found that Tom had a brain tumor. They don't deal with those much in Wausau, so they sent him right away by ambulance down the the UW University Health hospital in Madison, WI.
They found that the tumor was located near and pushing on the 3rd ventricle in his brain (right in the center of the brain), which allows cerebral spinal fluid to flow in and out of the brain. So, the fluid was barely able to flow out, which caused the pressure in his head (he was hydrocephalic) and therefore the headaches and all of the other symptoms. Funny aside, we had been teasing Tom about his need to take more naps and calling him "old man" and "nap boy", saying that him turning 50 must have really made him age. And I was even thinking that he was having sinus issues and being kind of a wimpy sick guy and picking on him, telling him to suck it up! But, then we came to find out that all of his issues were actually caused by the tumor. So, we felt pretty guilty for teasing him, but he would have done the same to us. :-)
The first surgery that he had was to place a tube into his head to actually drain the fluid out of his head and to do a biopsy of the tumor. This relieved a lot of the pressure in his head and helped the symptoms a lot, but not a lot of fun to deal with doing things, like turning in bed, getting up and moving to a chair, etc. with a tube attached to an apparatus, along with all of the other tubes and wires attached to him. Needless to say, I became quite good at untangling wires and detaching and attaching medical monitors. But, we weren't so good with dealing with the constant array of alarms that Tom would set off every few minutes. Ugh!!!
The next step was for them to drill a hole in through his forehead into an area that would allow the fluid to flow in and out of the brain via that opening instead. They were hopeful that that would work and that they didn't have to place a shunt, which they thankfully never had to. Then, it was getting him to recover and get strong enough to be able to go home until it was time to do the surgery to remove the tumor. We were released on April 29th to go home and his surgery was scheduled for May 15th.
During our time in the hospital, my beautiful Aunt Bernice passed away on April 26th. She had been suffering for years with dementia and also battled diabetes throughout her life. She had been living in an assisted living facility. We were fortunate that we were released from the hospital when we were, as I was then able to attend her funeral. She was my mom's sister and like a second mom to me during my whole life!
Well, that May 15th date didn't happen because the surgeon had to do an emergency life or death surgery on another patient and Tom's surgery was bumped to May 23rd, the next available opening. This ended up being a great blessing, because the weekend prior, my dad, Leonard "Mux" Clark, declined in health and I was able to spend the weekend with my dad and my sister and her husband and enjoy time with him before his passing on May 26th. If Tom's surgery had not been postponed, I would have been in the hospital and not able to spend some my dad's last moments with him.
The surgery was scheduled on May 23rd for 7:30 am, so we got to the hospital at 5:30 am and they thought that the surgery would take 5-6 hours and then recovery time. But, no! The surgery actually took over 18.5 hours!!!!! Yikes!!! I'll just tell you that that was the longest day of my life!!! They actually got him into his room in ICU at 4:00 am (I had been awake for 24 hours at this point, with no hope for sleep for several more hours)! People have asked if I was going crazy not knowing, but although I was, that hospital actually has a neat system of keeping loved ones updated. They give you a little pager, like you get at some restaurants that light up and vibrate, but this one had a little message screen, too, that said how things were progressing and updated me every couple of hours. That was the good news, but the bad news was that the desk that distributes the pagers closed at 6:00 pm, so I outlasted the desk hours. After that, though, they would call me right from the operating room to give me updates every couple of hours. So, although it was arduous, I was kept informed along the way and they said that if there was anything worrisome that someone would come and talk to me, which thankfully they never had to do! The reason that the surgery took so much longer was because the tumor was actually very vascular, which means that it bled a lot when they made cuts and therefore, they had to stop the blood tons of times, so that they could see to make the next cut. We also found out later that the tumor was attached to Tom's brain stem, which most surgeons won't even go near to do surgery, because of the risk involved. We were VERY, VERY fortunate to have a blessing of a surgeon, Dr. Azam Ahmed, doing Tom's surgery because he is one of the few that will do procedures on the brain stem area.
They originally thought that the tumor was a Pineal Tumor, but after some testing following the surgery, they determined that is was an extremely rare tumor called a Pleomorphic Xanthoastrocytoma or PXA . It is more often seen in children, but obviously adults get it also. They were not able to get the whole tumor out because of the risk of where it was located. It is a tumor that could potentially grow back, but they feel that it would be a slow process of growing back and they will be monitoring it closely through the years.
Then the road to recovery began. At first, there were many scary things as a result of the length of the surgery, the tumor being located partially on the brain stem and Tom also suffered a stroke during the surgery in the cerebellum, which is a different portion of the brain than most strokes occur. He was unable to lift up and move his right arm and hand and right leg at all, but that quickly (within a week or so) got much, much better, thankfully. There is still a very minor amount (hardly noticeable at all) of lessened strength and coordination, but they feel that that should get back to full strength in time. Tom's vision was greatly affected and at first, he couldn't even move his eyeballs in any direction following someone's finger. His vision is greatly better, but it is still somewhat of a struggle for him focus. It truly is improving every single day and now the only direction that his eyeballs have trouble moving is upwards, but that is getting better and better. They said that the eyes and his vision would be the longest healing process, but they are very optimistic that they should be back to full or nearly full function down the road. Because of the vision issues and the trauma to the brain during surgery, walking and movement were a struggle and still are somewhat, but SOOO much improved! His memory and comprehension were greatly affected, also, but that is also so very much better each and every day! He needed a walker at first, along with a "gait belt", which helps a person walking with him to keep him balanced and help him to not fall hopefully or at least guide him slowly to the ground if he would fall, which happily never happened. He had to have someone walk with him at all times any time he went anywhere, which at times understandably made him crabby, but not too often. I wouldn't like that either! :-) He has now graduated from all that and doesn't have me tagging along every step that he takes! He's happy about that and so am I!
Speaking of graduating, our youngest son, Sully (age 18), graduated from High School on May 31st! I made a quick, crazy trip up to Wausau from Madison and then back leaving Madison at 4:30 pm for the 7:30 pm ceremony and then got back to Madison around 2:15 am! Long day, but well worth it!!!
We were in ICU and then general care in Madison for 2 weeks and then we were able to get Tom to Wausau where he was admitted to a Inpatient Rehabilitation Therapy unit specifically for neurological patients on June 5th. It is a wonderful unit and the doctor, Dr. Margaret Anderson, PA (which is actually our neighbor - way cool!), therapists and nurses were all outstanding and very incredible at what they do!!! Tom was there for two weeks and then able to come home on June 19th! YEA!!!