197 Days and a Busy Week

Whew! It has been a busy week and that has made the week seem very long. There were quite a few people in and out this week, trying to get things set up with Hospice. Travis’ neice and nephew had spring break this week in Georgia, so they were here for the week with Travis’ sister. Her husband was able to join us on Thursday evening. We also celebrated Travis’ birthday and his niece’s. She was born on his birthday.

Over last weekend, it became it increasingly harder to get Travis into our bed. By Monday, it was painfully clear that it was time for hospital bed, even though I was not ready for that yet. A bed was delivered on Monday but since I was not prepared for it to happen that soon, we placed the hospital bed at the end of our bed. During that first night, Travis woke up several times and asked, “Why are you way over there?” I would climb in bed with him until he fell back asleep, then I would climb back into our bed. The next day, I decided I would not repeat a night like that again. So I, along with some help, got busy clearing an area to place our bed after it was taken down. We were able to borrow a twin bed and now Travis and I can still sleep side-by-side. (See photo gallery)

Every day it seems that we lose a little piece of Travis. We are using the wheelchair more often then not in the house. It does not take much to wear him out. His appetite still is good. At this point, Travis has all the signs for the 3-6 weeks left stage (www.brainhospice.com). This is only an approximate time range and is not set in stone. It may be longer than that time range but only by days or weeks and not in terms of months.

He is still unaware of the depth of circumstances. At one point, with some many people in and out this week, he was very confused even though I have repeatedly talked about Hospice and his condition to him. He was very confused and concerned and asked if I was trying to get rid of him. I assured him that I was doing everything I could to keep him home and that these people were here to help me do that. I could tell that he was trying to process that and understand. I told him that I loved him and he was not going anywhere and to that he said, “Ok”. Sunday, he began to slur his words. He asked me why he could not talk right. I told him that it had to do with the brain tumor. He gave a little cheeky grin and told me that everything could not be blamed on that. I laughed and told him that this would be the one time in his life when he could blame everything on one thing. I could tell that he was trying to process that and understand. I then looked at him and said, “I love you.” The confusion immediately lifted and he said that was the one thing that he was sure of even if he was not sure of anything else. I have begun to wonder if and what point he might actually realize that he is dying.

At this place in time, it seems that I have reached a whole new depth of meaning to the word “bittersweet”. Every moment we have whether it is sweet, playful or loving seems to be tinged in grief and anguish, at least for me. It was probably the hardest this week with it being his birthday. To realize that it would be his last birthday. As I was making his birthday dinner realizing that this will be the last birthday dinner that I will make for him. Even as we took the balloon ride (see photo gallery) through the morning sky on his birthday. It was so calm and peaceful up there. I remember thinking “heavenly”. Then I thought that the next time that Travis would float through the sky, he would probably be going to heaven. That evening a group of friends gathered in our yard to sing worship songs to Travis and our family. I looked out among the faces, recalling the ways that we had meet each of them and the ways our lives had crossed and all that Travis and I had enjoyed with each of them. That evening was glorious and wonderful. It was moving for Travis, me and our whole family.

Some days I am struck and can’t seem to get past the unfairness and unjustness of all of this. I can’t believe that this is happening. Late one night this week, one of our children got up and found me in the living room. I could tell they had been crying. They told me that they had been lying in bed, trying to go to sleep and all they could think about was how hard their life was going to be after daddy was gone. In those moments when all I can do is hold this child and cry with them, I seem to be struck with those feelings of unfairness the most. Other times, as I am going about taking care of Travis or helping him get dressed or something mundane, at any given moment I can be overwhelmed with grief and anguish over how much has changed and how much time we might have left.

I do not have any answers or any reasons, sometimes I have no words. I may never have them. What I do know right now is that we are so blessed to have amazing friends and an amazing church. What is most important is that Travis knows that he is loved not only by us but by all of you as well.

189 Days and a Difficult Decision

While I know that I would say that there have been times in the last six months that have been very hard for me, I think that the last two weeks have been the hardest by far.

Circumstances over the last two weeks have led us to the place where we have decided that we will not participate with the clinical trail but have decided to call in Hospice instead. This has not been an easy decision by any means. In fact, this is the hardest decision I have ever made in my life and probably will ever make. I have been conflicted and agonized over Hospice long before the MRI results, knowing that at some point, we might have to make that decision. All during this time but more so in the last two weeks, God sent many signs and confirmations to me that this was the right decision. One of those signs was a website that He led me to called http://www.brainhospice.com This site was very informative as to where we are in our journey and whether or not we knew if we were ready for Hospice or not. Feel free to check it out, as it will you give you a very accurate picture of what we are facing now and what lies ahead. As hard as the decision was, I believe that this will help not only us but Travis enjoy the moments that are left. While I know that this is the right decision, that fact has not made it any less painful for me, the children or Travis’ parents.

The children were not unaware of Hospice. It was a subject that I introduced them to early on, letting them know that it might be something for the future. I don’t think any of us thought the future would come so quickly. Last Saturday night, I sat the children down and explained the decision to them. It was a hard, emotional conversation as now the children are now facing the reality of death on a whole new level. While this has been so hard for them over the last 6 months, it has been amazing to see them take every moment to tell their dad they love him, or kiss and hug him or ask him if they can get him anything.

Hospice was out today and did the admitting process, which took about 3 hours. Travis week has been about the same as last week except that there were a few more days where he struggled to hold his upper body upright. Our goal with the help of Hospice is to help him maintain as much functionality as possible for as long as possible. Over the next week, we will meet our nurse/case manager and the Hospice doctor who will be the attending. (Dr. Pan will remain on Travis’ case in an advisory capacity) I have talked to Travis about Hospice (several times actually) and his processing of it is limited just like his processing about death and where he might be in that process. Most days he does not even remember having chemo and radiation. So I assure him that we have done everything we could and our goal now is to just be with him.

There simply are not words to express everything that we are feeling now. How each moment we have is bittersweet. How it feels as if there is this invisible timer that is ticking and we are racing against it to fit everything in that we can.

As we continue down this road, my posts will probably become more frequent as I am sure that things will begin to change on a weekly and daily basis.

Thank you again for all your love, care and support of our family.

182 Days, Visits and Travis’ Birthday

We officially passed the 6 month mark this week. It has been 6 months since Travis first went into TGH and was diagnosed with a brain tumor.

I kept waiting all week to post an update thinking that I would have CSF test results to share…but I don’t. Instead I will share about our week and ways that you can share in the coming months.

It has not been a very good week for Travis. It has been a long and hard week for the rest of us. Over the last weekend, Travis had a lot more agitation and frustration. Most of this is probably related to the tumor but may also be Travis’ own frustration. It is hard to say as he has been most happy and compliant most of the time. We have medication that we can give him when this happens that helps calm him down. We only use it as needed and it usually does the job within about an hour. This past weekend, the medication did not seem to work as well. So the decision was made to start Travis on a regular dosing in order to keep a baseline of medication in this system. This has seemed to help somewhat.

On Tuesday and Wednesday morning, Travis was very unbalanced and seemed to be more fatigued than usual even though he had just gotten out of bed. On both mornings when I asked him if he could walk to the car with this walker or did he need the wheelchair, he stated that he should use the wheelchair. Up this point, Travis has not really recognized a need for the walker or the wheelchair so the fact that he knew he needed the wheelchair was very telling to me. Therapy at Moffitt on those days was adjusted to accommodate his fatigue. Thursday morning when Travis got out of bed, he had great difficulty holding his upper body upright. His upper body kept leaning forward dramatically and he could not seem to “right” himself. We used the wheelchair in the house that day. I decided we should forgo therapy that day since Brett had a baseball game that night and I wanted to conserve Travis’ energy for that. During the night last night, Travis was up for about 2 1/2 hours and decided he was hungry so I got up to fix him something to eat and eventually he went back to sleep. Today, he still had trouble maintaining an upper balance but it did not seem as pronounced as yesterday. He was able to use the walker in the house today.

Focal seizures (one limb or one whole side) are still pretty common. He did have a mild grand mal seizure the other day but it only lasted about 15 seconds or so. We are discussing with Dr. Pan increasing Travis’ anti-seizure dose.

Travis’ mental confusion is pretty much a constant state at this point. He can still have limited conversation but sometimes his input may not make sense or he may talk and ask about things that don’t make sense or did not happen.

Travis is still maintaining weight fairly well. This week, he weighed 185, which is the highest weight since he first diagnosed. He does have favorites as far as food goes. He loves the bacon gouda sandwiches from Starbucks. He could easily eat these for every meal and typically if he will not anything else, I will make a run to get him one. Good thing there is Starbucks at the end of our road. He seems to crave sweets right now. I do have to monitor this somewhat because of the glucose issue. His standard sweets right now have been peanut M & M’s and Snickers. We sill have conversations at least once a day as to why he can’t have Dr. Pepper (the caffeine tends to make his tremors worse).

All along through this whole process, one of my questions to God has been why he would leave Travis here the way that he is right now. A few months ago, before our last MRI and doctor visit, I felt that God told me that Travis was not here for Travis but that he was here for me and the children because we were not ready to say “goodbye”. So that is our focus for now. The children and I have talked about the things that we want to do or say in order to be in a place where we can say “goodbye”. If Travis gets healed suddenly then we have wasted nothing, we will have been with him and said the things that matter the most. If Travis goes to heaven, then we have not wasted the opportunity that God gave us to come to a place of “goodbye”.

I know that Travis has touched so many of your lives and meant something to you as well. I want you to have the opportunity to say and do the things that you feel like you need to do as well. There are two ways that you can do this.

If you feel like you would like to see Travis and express to him what he has meant, then I encourage you to do that now and not wait. Please keep in mind that you still need to be healthy for visiting. Also, please understand that for the most part, Travis is not very aware of the the fact that he is dying. He knows things are not good but I am not sure that he quite understands how close he may be. If you start saying “goodbye”, he most likely will ask where you are going. 🙂 I think what would matter to Travis the most is hearing how he has affected lives and what he has meant to people. Please call (813-920-5258, 813-418-1178) before coming to visit, we are at Moffitt a couple of mornings a week and we are trying to do a few outings as a family. I would hate for you to come by and us not be here.

Another way, you can share is for his upcoming birthday. Travis will turn 39 on April 21st. While I know that he is not physically up to a party, I would like for you to share either in a card or note what Travis has meant to you and how knowing him has impacted you. Some of you may not know Travis personally but experincing this journey with our family has impacted your lives, please feel free to share that as well. While Travis will enjoy reading these, I am doing this mostly for our children. I know that in years to come, the children will be able to read these words over and over and realize how their father impacted the lives of others. You can mail these to our home address at 15123 W. County Line Rd, Odessa, FL 33556.

Please understand as well that there will probably come a point as we get further along that we will probably ask for no more visits and limit the time that is left to family.

I wish I had more words to express the anguish and affliction in my heart but I don’t. I cannot begin to tell you how much your prayers have helped me and the children in moments when we probably were not even aware. Thank you for holding up family up in your thoughts and your prayers.