Hospice & Seizures

A few days after Christmas, we received a call from the doctors office that since Dad has decided to discontinue treatment, the next step would be to go under the care of hospice. At that point nothing had really changed medically, and if he would have continued with chemo, we most likely would not have been referred to hospice.

We had our initial meeting with the hospice social worker this past Friday, December 30th. She came to the house and basically just explained everything that hospice can do and the various services they provide. We learned that they do a lot more than originally thought, including having any necessary medications delivered to the house! The nurse was supposed to come over Saturday to finish getting all their paperwork filled out and take care of the medical side of things.

 We ended up having to call their 24 hour hotline Friday night around 10:30. Dad started having another seizure, very similar to the ones he had in August. He was awake and breathing but wouldn't answer any questions, kept staring off at nothing, and his arm would twitch. The nurse was at the house in roughly an hour or so and we were able to give him medicine to stop the seizures after a few doses. He did a little bit better yesterday, but today was a rough day for him. He's very agitated and confused and most likely still having seizures. He's asked multiple times for his dress military uniform and wants to know what time to be at Baue for his funeral. He also doesn't believe that he's at home and keeps asking when he can go home. According to one of our hospice nurses, the brain can go back to wherever he was during the first seizure or where he was during his first big seizure. Since he had 27 seizures while on the monitoring equipment back in August, we kind of think that is why he thinks he is somewhere else.

Once we can get everything arranged with hospice, we are probably going to do respite care. Basically he will go stay in a local hospital for a few days, still under hospice care, so Mom can get some rest (she hasn't sleep much in several days). It is exactly like going to stay in a hotel but he will have the nurses looking after him and giving him meds, helping with hygiene, etc. Hopefully while he is there, Mom can get fully recharged and we can have hospice bring in some equipment to help being at home easier. We are currently debating on bringing a hospital bed home, just afraid that it will add to the confusion and agitation. Once he is back home, the hospice nurse will come twice a week to check on him and a nurse aide will also come twice a week to help with showers and that kind of stuff. Our goal is for him to be home as long as possible, but sometimes we have to put ourselves first and hopefully the respite care will allow Mom to do just that.

We were able to have a really nice Christmas! On Christmas Eve we went over to my grandparents for the evening and then on Christmas Day, after I got off work the six of us has a great dinner and then opened gifts. Dad was in such a good mood that he was laughing so hard he couldn't talk!!

Huge Update

This is by far the hardest update I've had to write. I meant to update earlier today, but it took a lot more mental preparation for me to write than I thought it would. (And maybe some wine.)

Dad had another MRI this past Monday and had an appointment with Dr. A on Wednesday. The original tumor and necrosis appear to be stable compared to the last MRI that was 3-4 weeks ago. However, the third tumor has grown slightly in just a short amount of time. This change was not enough for the doctors to change any part of his treatment. We also heard back from an independent research company that had requested a portion of Dad's original tumor to run some more tests on it and see if there was any mutations to it that could potentially respond to medications. Unfortunately, there are no drug-able mutations and at this point we have exhausted all possible courses of treatment. The swelling that caused problems shortly after Thanksgiving seems to have stabilized and we are decreasing the amount of steroids he's on. We'll go back and see Dr. A in about 4 weeks.

Dad also came to the decision this week that he is going to stop receiving chemotherapy. This was not an easy decision by any means, but as a family, we are supporting Dad's decision while he's healthy enough to make that decision for himself. It was discussed with his team of doctors who basically said there is no right or wrong option when it comes to stopping or continuing treatment. Sometimes it is better to stop treatment sooner, rather than later, so you can really enjoy what time you have left. Chemotherapy is poison going into your body and if you wait too long before stopping, you can be too sick to enjoy the rest of your life. There is no predicting how fast or how slow the cancer will progress. The third tumor will more than likely continue to affect his eyesight.

Dad is going to remain at home for as long as possible, and as long as we are able to properly care for him. We are continuing with our holiday plans as usual and do not plan on making or discussing any end of life decisions until after the holidays.

On a different note, I never shared our family photo from Thanksgiving on here! We went to my aunt's house (as a family of 6!) and one of my lovely cousins took our photo.

Back at Barnes

Some of you may have saw on Facebook that Dad was back in the hospital. Saturday night Mikayla had to call an ambulance for him because while he was using the bathroom, his legs gave out and Mom was barely able to catch him and prevent him from falling onto the ground. Mikayla and Mom were able to get him into a wheelchair but Mom knew something wasn't right. I was actually at work and went over to Fire/EMS dispatch and called Mikayla and watched the GPS on the ambulance that was en route over there. Medics determined he was stable but decided to transport him to Barnes St. Peters to get checked out. Once at the ER, they treated him for dehydration (he hadn't eaten or drank much that day) and were waiting for lab results to come back and then most likely release him. They decided to do a CT scan just to check everything out which revealed that there was some significant swelling in his brain as well as some bleeding.

At that point, the St. Peters doctors talked to the Big Barnes doctors and decided to transport him downtown between 4 and 5 am on Sunday morning. Being a 911 operator has it's advantages, I was able to let Mom and Kayla know when the ambulance was on it's way to transport him! Most of the day Sunday was just a waiting and observation day with an increase of steroids to try and help the swelling. He did seem to be feeling better by that point.

This morning (Monday), Mom, Mikayla, and I all got up to the hospital around 9:30 am. Dad was very agitated and not like himself at all. Physical therapy was able to get him moving around a little bit and he went from the hospital bed into the recliner with only a little difficulty. He didn't have his cane and being at the hospital, have to move and hold onto things a little bit differently than he would at home. 

 After therapy left, he took a nap and woke up when they came to get him for an MRI. There was some debate over whether or not he was going to be able to take a Xanax before the MRI (he's been taking one before MRI's to help with claustrophobia) due to him being very sleepy. They don't like to give Xanax in those types of cases because it can slow and ultimately stop your breathing. However the doctor did give the OK for him to have it before his MRI. When he got back from the MRI, he seemed much more like himself, was making jokes, not agitated, and was asking for lunch. He finished off some pasta Kayla and I had for lunch and then was asking for sweets and ate some smarties (shockingly, didn't ask for orange sherbert!).

We got the MRI results back fairly quickly and it looks like the original tumor as well as the new "tumor" we've been watching look fairly stable compared to his last MRI, however there looks like there's some inflammation where the necrosis (damaged tissue from radiation) is, or what we refer to as the second spot.  Overall, the swelling and the bleeding have decreased since the CT scan but there is still some minor spots of both. Due to the bleeding, they haven't put him on any blood thinners to prevent blood clots in his legs.

Dad doesn't know this, but unless Dr. Ansstas (the primary oncologist) has something different to say, he will probably be released from the hospital either tomorrow or Wednesday. They said he could either go to another rehab facility place for some extensive physical therapy or if we were comfortable taking him home and doing home health and having a physical therapist come to the house, they were okay with that. Obviously, Dad would prefer to come home so as of right now, that is the plan. We haven't told Dad any of this because he tends to fixate on things and if we say he might come home on Tuesday and they end up keeping him, he'll get agitated and upset. He doesn't have much sense of time anymore and easily gets confused. He might think something that happened six hours ago just happened an hour ago or vice versa. This is his new "normal" though, ever since he had all those seizures back in August.

I think that's everything that happened over the weekend. As usual, keep us in your prayers and if anyone would like to come visit, give Mom a call!!!

Seizure Doctor Visit

So this week, the family met with a doctor that specializes in seizures and seizure control. This was a doctor that Dr. A had recommended we see to help keep in control of the seizures. We learned that while Dad was in the hospital back in August, he had 27 seizures over a 2.5-3 day span while he was hooked up to the video/brain wave monitoring. Definitely not something you want the high score in!!!! These seizures were seen only in brain waves and they were near the right side of the brain near the edges of the tumor, according to the specialist.

At this point with his medication, we have to weigh the benefits and the risks of altering his medication. We think his extreme tiredness is partially caused by the seizure medication, however changing his medications too much could cause more seizures to occur which we obviously want to avoid. At this point we are not going to make any changes and just see how things go. We'll go back in 6 months for a follow up appointment.

Next week we have another MRI (already, time has flown!) to check the 3rd spot and see if there have been any changes. Prayers for good results would be appreciated!!!

Mid October Update

Dad had a regularly scheduled MRI this past Monday and then his round of doctor appointments and treatment on Wednesday. We met with the neurologist who told us that there was no change on the MRI and that there were no signs of growth. He cleared Dad to start physical therapy again and is keeping his medication the same, however when we meet with the seizure team, they might make some changes, but was pleased overall with how things were looking.

We then met with Dad's oncologist who saw something very different on the MRI. The original tumor and the second site with possible radiation necrosis showed no change however he did see a new third spot that is concerning. They cannot for sure confirm that it is a new tumor, but it shows some blood flow to the area which could mean there is some disease progression. It is out of the radiation field so they do not think it's radiation related. This new spot is in the area of the brain that controls vision, which explains why Dad has been having trouble seeing. His peripheral vision is significantly decreased and has difficulty seeing things, like his phone screen. He's also said that sometimes he doesn't see things, like a cup sitting on the table. They are going to do a repeat scan in 4 weeks and continue treatment as planned, with an increase dosage in steroids. If the scan shows improvement, they will lean towards this new spot being radiation necrosis although it seems very unlikely. If it is a tumor, it is likely that it will continue to grow.

Obviously this was not the ideal news that we wanted to hear, but Dad has proven that he is a fighter and we will hope and pray for the best. <3

Pedal the Cause and Dad Update!!

Just to let everyone know, I survived Pedal the Cause! Mom, Dad, and Mikayla were able to come out and cheer me on as well. I had a ton of fun and even though I was riding for fun and not time, I was able to finish in roughly 1 hour and 53 minutes. Thank you to everyone that made a donation, as of now I have raised $545 for cancer research!!!

If anyone is still wishing to donate, you can do so until October 31st! Here is the link: http://stlouis.pedalthecause.org/riders_profile.jsp?MemberID=79161

Right now, we are looking at getting Dad a power chair. He's still walking however his current wheelchair is a push chair and it's getting a little rough looking. This chair will be more comfortable for Dad when he needs to be in it for longer periods of time (mainly doctors appointments and errands) and will allow him to move himself instead of having to have someone push him. It's a slow process though and will probably be a month or two before he is able to get it. Mom and Dad are looking at getting a new vehicle to transport the wheelchair, which also adds to the timeline.

Dad also got a port put in last week. We're hoping this will make blood draws and treatment more comfortable for him as it was getting harder and harder for the nurses to find his veins. His next treatment is this Wednesday and they'll access the port for the first time!

This past weekend we also celebrated Dad beating the challenge his very first doctor gave him. Before we started going to Siteman, the doctor told Dad he had 14 months to live and that he should go home and put his feet up. Dad has clearly beaten this challenge and the whole family celebrated at Joe's Crab Shack!!!! Dad ate an entire Maine Lobster and crab legs! We had no idea how to clean a lobster and I ended up reading step by step instructions to Mikayla while she cleaned it. It was so awesome to see Dad enjoy a meal as much as he did!!

Mid September Update

Dad has been back at home for just over a week now. He's very glad to be home (obviously!) and seems to still be making progress in getting back to where he was prior to all the seizures. Since he's been home, he's gotten a lot better about knowing what time it is and whether it's day or night however he's usually awake and ready for breakfast around 3am.

He's really not supposed to leave the house unless it's for doctors appointments until he gets a little stronger. There is a home health nurse that comes each day to help out and then physical and occupational therapy also comes to the house.

In the near future, we're going to end up getting a power chair for Dad to use. While he doesn't need a wheelchair 100% of the time, it will make it a lot easier for him to get around. Mom and Dad are also going to look into getting a van which will make transporting the power chair much easier as well.

Dad is going to have a port put in next week, which will allow for easier blood draws and eliminate him getting stuck with a needle all the time. It's gotten harder and harder for the nurses to find arteries when they need them and causes Dad's arm to get pretty bruised from time to time.

Pedal the Cause is next weekend and I'm super excited! I've raised $500 so far however there's still plenty of time to donate!!! Thanks to everyone that's donated so far, I couldn't have raised so much without your support!! Don't forget,100% of your donation goes to cancer research at Siteman Cancer Center and St. Louis Children's Hospital!!

Here is the link for anyone still wishing to donate: http://stlouis.pedalthecause.org/riders_profile.jsp?MemberID=79161