290 Days and Travis Reached His Final Destination

Travis passed away at 10:30 p.m. on Monday. I think to date, this will be the hardest post that I will write. By Monday morning, Travis was in a coma. He most likely had slipped into one on Sunday at some point. Having never experienced any of this before, I did not realize that had happened because he was still opening his eyes some. At about 1:30 p.m. on Monday afternoon, his breathing began to change a little. I was not sure what was going on and I was afraid that I was making something out of nothing so I was very cautious in making decisions. The nurse was due from Hospice within the hour so I waited for her to assess Travis. After she assessed him, she felt that we probably did not have much longer, that Travis would most likely pass later that day or that night. It was felt that the tumor had probably reached the brain stem and that was accounting for the breathing and heart rate changes. At that point, I felt safe to sit the kids down and let them know. Of course, our youngest was the first to respond, realizing that Travis was not going to make it to her birthday. At this point, I was so grateful that the children and I had taken time to say our goodbyes weeks ago. There was no urgency or rush, just a realization that the end was near as painful as it may be. A nurse friend of mine offered to come over and manage Travis and stay through the night if need be, so I could just be with Travis. Other people stepped in and stayed with the children and hung out with them so I could be with Travis. I spent the last few hours with Travis. It seemed like it happened so fast compared to the months that it took us to get here. The children seem to be doing well. Believe it or not, as the details were being seen to and arrangements being made, there was quite a bit of laughter coming from the other end of the house where the children were. Only God. I am still pretty numb. I do not think that it has settled in yet. I am not sure when it will. I do not think I will know what to do with myself in the morning. Everyday when I awoke, I got Travis’ medicine and started the day with taking care of him. I guess I will see tomorrow.I will post details on Travis’ memorial service once they have been arranged. Thank you again for your love and prayers.

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289 Days and Calm at the End of the Week

This week started out with some very chaotic activity but by the end of the week everything was been calm and peaceful. I guess those are two odd words to use in the midst of this but it is true. There have been no more seizures. The new medication plan seems to be working and for that we are glad. The Hospice doctor was in on Wednesday. By then, he felt that Travis had stabilized and I agreed. The nurse was here on Friday and everything was about the same. Since the seizures, Travis seems to have a harder time communicating. I don’t think this is related to the seizure but more an energy factor. Whether it is the energy it takes to process a question and then not only think up the response but then communicate or just the energy to communicate, either way, communication with Travis has dropped off dramatically. Not only verbally, but head shaking or even blinking is not really even being used by Travis. So with communication dropping off, it has made my job a little more difficult. Trying to read signs and things that might give me indications as to pain. I noticed on Wednesday that Travis seemed to be restless, just moving around a lot. He was not moaning or grimacing, just moving more than usual. At first I didn’t think much of it. Then I noticed he was rubbing his head a lot. Again, no other signs just holding or rubbing his head. By Friday morning, I wondered maybe if Travis was experiencing maybe a low level of pain or discomfort thus causing the restlessness or head holding. When the nurse came, we discussed it and decided that next time I viewed those signs, I would give him pain medicine and see what happens. That decision seems to have resolved the situation, so apparently there was some low level pain or discomfort that he was experiencing. After the pain medicine kicks in, Travis calms right down. Travis is still not eating but that started before the seizures so that is not new. He is able to swallow small pills and water if he is awake. He has been sleeping quite a bit more than before the seizures but not anymore than he was when he would be in a decline. The children were able to hang out with some friends this week and I think that was good for them after the emotional start to the week. An opportunity to just be kids and live life. My biggest concern now is that our youngest child’s birthday is in 3 days. Not like I have had any control over anything that has happened so far but I have had to give this to God just like everything else. All of the children are aware of the circumstances and that Travis’ passing maybe days or weeks away. We just have no way of knowing. I have especially talked to her though, about her feelings about her birthday and what her desires are. It just gives me a way to pray. She really wants her dad to be here to see her turn 11. My prayer is not only for that but also that no matter when Travis passes, that God is able to handle her heart in such a way that her birthday will always be joyful and not painful in the years to come.

285 Days and Another Seizure Yesterday

Travis had a minor seizure yesterday morning. It seems odd to combine the words “minor” and “seizure” in the same sentence but that is the best way to describe it. It only lasted about 2 minutes. We were just about to administer the medicine when he stopped seizing. Whenever he has a seizure, it starts the clock over as far as recuperation. So yesterday, he slept a lot and was pretty unresponsive. If I walked through his field of vision, he would track me with his eyes. Last night I noticed that he would watch the t.v. for a few minutes a couple of times. Mostly, he just stares off to the side. Last night, he began to move his left leg and arm more, which is a good sign. This morning he has responded verbally a few times and been awake quite a bit more this morning.Monday evening, the children started asking questions after everything had calmed down. Things like, “What does this mean?”, “What if he has a seizure while you are sleeping?”. Things like that. I explained that this didn’t mean anything really. It does not make anything more imminent. He should have been having seizures all along and he was not. Now he is. I explained that I am sure I would wake up if he was having a seizure. In the event of another seizure, we would simply administer the medication and it should stop within 15 minutes. The children then, of their own accord, came up with a plan and they gave each other jobs as to what their role would be if Travis had another seizure. I then explained that if the seizure did not stop, we would simply call Hospice and they would come. Interestingly, they were very concerned if Travis would go to the hospital. It seemed that they did not want him to leave home. I explained that he would not go back to the hospital. That if we encountered a scenario where it was hard to control the seizures that Hospice would give us a 24 hour nurse to manage the seizures so that responsibility did not fall to us anymore but that Travis would stay here. By the time they went to bed that evening, they seemed to have all settled into the fact that this was just the new “normal” and it was not a big deal. Even yesterday with Travis not really responding and sleeping more, they still came in the bedroom quite a bit and just talked and interacted with him as they always had. It didn’t matter if his eyes were closed or if he responded, they talked anyway. That was a beautiful thing to watch. As parents, we know that our children love us even if they do not always show it. Watching the way that our children have poured love out on Travis has awed and humbled me on more than one occasion.

283 Days and Grand Mal Seizure

Travis had a grand mal seizure this afternoon. He has not had a seizure since about February. Funny enough, the Hospice nurse had actually just been here and had only been gone about 5 minutes. The girls and I were at the table working on a puzzle. I heard a funny noise from the bedroom and when I looked into the room, I realized Travis was having a seizure. I immediately went over to make sure that Travis was safe and would not hurt himself. It seemed like chaos ensued all at once. Our youngest child had actually never seen Travis have a seizure, so she immediately fell apart. Pretty quickly I realized that I needed to prioritize what I needed to do. I called Hospice and let them know what was happening so they could dispatch the nurse back. I then called someone who could come and sit with the girls until everything got resolved. Once that was taking care of and while I continued to make sure that Travis was safe, I calmly explained to girls again what was taking place in Travis’ brain and that he was not in any pain. (Travis will still seizing during this whole time.) It had been so long since Travis had a seizure and of course, we are very aware that the end could be near. After the explanation, the girls seemed to calm down quickly enough. The boys had been outside during this time and finally came in the room. At this point, Travis was not seizing anymore but I let them know what had happened and that we were waiting on the nurse to arrive. The seizure lasted about 4 minutes and then Travis pretty much fell asleep after that, which is pretty common after a seizure. The nurse and our friend both arrived at about the same time so the children were occupied while I dealt with the nurse and what a plan of action would be if Travis had another seizure. We have an anti-seizure kit here so that immediate medication can be administered to stop a seizure should it occur. They also decided to increase his anti-seizure medications hopefully to reduce the occurrence of more seizures.Travis will pretty much be out of it, so to speak, for the next few days. While he might be awake, there will be little response or recognition and he will sleep a lot. After a seizure, it takes the brain time to recuperate. Seizures are very taxing on the body and the brain and everything will work in slow motion for a while. I do not really know how I seemed to keep a calm head in the middle of all this. I do not know how I just immediately knew just what needed to be done and in what order. The only explanation would be that whether I felt him or not, God was here and orchestrating everything, even clear thinking on my part.

282 Days and 9 Months Since Diagnosis

It has been a little over 9 months since Travis was diagnosed with a brain tumor. Things are pretty much the same. We seem to go through some very extreme ups and downs. Travis will go through several days in a row where he does not eat, rarely speaks, sleeps a lot, has irregular breathing, etc. Then all of the sudden, he will turn everything around and be back to eating, being awake and not exhibiting anymore signs of decline. This is very hard for me emotionally. It feels like I am attached to a bungee cord that keeps going up and down. The children are doing well even with the extreme ups and downs. Since Travis has been bed bound, the children have each in their own way naturally gravitated into taking care of Travis. They seem to get such joy from being able to take care of their dad anyway that they can. They are always asking if he needs something to eat or drink, if he needs his pillow adjusted, making sure that he is not in pain and other things. While that is definitely a role reversal, it seems to bring them great joy and allow them ways to be even closer to their dad.The only way to really explain this plateau is to share with you a conversation that Travis and I had a few weeks ago. I was sitting by his bed and we were talking. He said that he was tired of fighting. I told him that it was okay to stop fighting, that the children and I love him and we will miss him. I also told him that I and the children loved him enough to let him go. He then looked at me and said that he didn’t want to leave. From that point on, he made up his mind that he was not going to leave his wife and children. So the days that he levels off are days that he can, by sheer will, overcome the things that are going on in his body. The days that are lows, I believe, are the days where the battle gets the best of him. I don’t believe that his desire to leave has to do with worrying about us or how we will live but more the fact that for Travis, his family has always been a high priority. Wherever his wife and kids are, then that is where he wants to be. Just for the sheer joy that he loves being with his family almost more than anything else. The chaplain from Hospice came in last week to visit and spent some time talking to Travis about this. He did a great job talking about it and even seemed to put into words what I had been thinking and asking God for in regards to this. He talked to Travis about how it seems that God has built this innate desire into men to want to finish a job and see things through. Yet, Travis is 39, his children are still being raised, he still has years of marriage to live out with his wife. Then he said that unless a miracle occurs, that God is telling Travis that he will not get to finish those jobs, that God has another plan and way to finish those jobs. The chaplain then confessed that he could not imagine what that would be like but could only assume that the only way a husband and father could come to a place of saying, “Not my will but yours”, would be if God granted him the grace to do so. He then prayed along those lines with Travis and I. I know that is true. Travis’ desire to remain with his wife and children and to finish the jobs that God originally gave him the day that we got married is a noble, honorable and just desire. So I have been asking God to give Travis whatever it is that the needs, whether that be grace to accept or something else, to be able to come to a place where he can let go.

270 Days and Remaining Stable

Travis is remaining stable. He was on a downhill slide and then reached a point about a week and a half ago where he has leveled off again. He has been holding stable at this place since then. He has not had any improvement, just holding where he was.

Nothing else really to report. We are just spending time with him and being together. I will post another update if anything new arises.