170 Days

First of all, thank you so much for giving our family some time and space this weekend. We appreciate that gesture more than you could ever know.

I wish I had better news to report from Travis MRI. Travis’ tumor has grown very rapidly despite the radiation and chemo. It has increased roughly around 3 to 4 times the size it was a 2 months ago. It has not invaded the brain stem at this point but it is very close. In the tumor world, that is a very big, mean, aggressive tumor. (See photo gallery. The scan on the left is the one from January, it is very hard to see the tumor from this photo. The scan on the right is Thursday’s. The highlighted areas are the tumors.) Since the Temodar has not been effective, he will not be starting another round this week.

There is also a highlighted border around the whole brain area. It is uncertain if this is related to shunt issues or if there is now tumor cells in the CSF fluid. They adjusted his shunt Thursday and he will have a CT scan on Tuesday to see if that highlighted region is gone. If it is still present, they will take a CSF sample and send it off for testing. If tumor cells are present in the CSF, then there is increased possibility of Travis developing tumors along his spinal cord and in others areas of the brain.

Travis prognosis at this point is that he has anywhere from 2 to 6 months left. If the tumor invades the brain stem first, then it will be closer to the 2 month mark. We have only 2 other treatment options, one is a clinical trail that just started in January and the other is a different kind of IV drug. After spending the weekend, praying, thinking, reading documentation and talking to Chuck and Helen, I have decided to try the clinical trial. We are going to start the preliminary steps. If it is discovered that Travis does have tumor cells in his CSF, then that might preclude him from the study. I will cross that bridge later if I need to. If he is accepted into the clinical trail, he will begin this on April 5th. If we do not like the side effects or if his tumor continues to grow, then we can drop at anytime. At that point, I would have to make a decision about proceeding with the other drug (of which there are some elevated risks).

No matter what we try, it will not shorten our time line. If Travis still has a good quality of life, then I want to try everything that I can. If the drugs buy us a few more months with him then all the better. Only God knows how long and when we will be ready to say “goodbye”.

Travis was in the room for the visit with Dr. Pan and he has seen the MRI. I think a lot of the visit just went over his head and on some level he does not realize how sick he is or that he might be dying. On Friday, he could not even remember the visit.

I talked to the children on Thursday night. It seems since this started that the conversations just keep getting harder and harder. Their responses varied. It was very hard for them to hear a timeline. One child just kept asking me what the percentage was that dad would live. I just had to keep telling them that there were no more percentages, that as of now unless God intervenes, death is certain. The phrase that seemed to be uttered the most was “Why did it have to be our dad?” Several of them said that they felt like they had been punched in the stomach…again. I can signify with that.

I wish I could convey with words what we are all feeling right now but I can’t. To say that our grief, anguish and pain are incomprehensible seems inadequate. To say that we are inconsolable seems inadequate. There is more that I want to say and will at some point, in some post but I cannot now. My emotions are too overwhelming.

I will leave with this thought that I read from “Shattered Dreams” the day after we received the MRI news.
“When dreams shatter, we long to experience God’s nearness in a way that dries our tears. Instead deeper tears are released.” This is where we are.

I will put something out later this week about visiting Travis over the next few months. We just need some time this week.

165 Days and MRI Week

It is a little bit of a crazy week with appointments. Travis has his regular therapy visits along with an ophthalmology visit today and an MRI and appointment with Dr. Pan on Thursday.

The ophthalmology appt today was for a diabetes eye exam, just to make sure that the high blood sugars have not affected anything in that area. Everything looks great and there seems to be no problems. Praise God!

The MRI on Thursday will be followed by the appointment with Dr. Pan. He will be able to view the results immediately. This is the first MRI that will actually show whether the chemo and radiation has been effective or not. I have talked to each of the children individually over the last week, making they they understand about the appointment and giving them the opportunity to ask any questions. Most of those questions centered around what we would do if the tumor was still growing and things regarding the word “better” and what that really means for Travis. We are not really anxious about Thursday but we do know that it will give us information as to what the next few months might look like. For me, Thursday’s information will be things that I need to process and then make decisions that are best for all of us. In ways that I cannot explain right now, I know that God has been and is leading me even when I have not been aware. So my prayer has been that He has to let me know what the decisions are that need to be made. Please pray for that leading but also for strength, grace and mercy for myself during this decision making process.

I will probably not post right away after Thursday. While I know that each of you are anxious to know the results. I need time to communicate information to my children and then I think that we need time as a family to process where we are and what is next. I know that you will honor us by giving our family time and space over the next few days to do that. I will post as soon as I feel that I can.

Travis has stayed about the same. They have pushed a little harder in therapy over the last week but he has handled it well. His balance still remains an issue and the mental confusion is still present as well. Some days are good and some are bad. Some hours are good and some are bad. I think we have all learned to just roll with the flow, as crazy as that may seem.

On a good note, I know that a few of you were not able to get flu shots for various reasons. I have been checking the CDC website regarding flu outbreaks and communicating with Dr. Pan’s office as well. There has a steady and dramatic decline in flu-like symptoms over the last month. With that information, we feel that it would probably be safe for Travis to be around people (who have not had the flu shot) without any risk of contracting the flu. Please keep in mind though that you still need to be healthy, no colds, coughs, etc. before visiting. We will also probably limit visits during the 2 weeks following his chemo regimen as this is when his blood counts are the lowest. Since our schedule is erratic and some days are better than others, we ask that you call before visiting.

I have often made the statement that there are things that we “know” (head) about God but often during certain experiences something happens within us and we experience a revelation that can not be gained any other way. That revelation is when your head “know” becomes a heart “know” because you have experienced it. This past week as I was continuing to read “Shattered Dreams” (I can only read small segments at a time) something happened to me along that line. Something that gave me a glimmer of hope in this valley. The author is talking about Naomi (from the book of Ruth) and how she had given up on God. He was the source of all her trouble and pain and she did not hesitate to speak that fact aloud to others. Then something happens. Something that most people would think was a coincidence but somehow in the midst of her agonizing pain, Naomi saw God in it. (Ruth 2:20) She comments about God’s kindness. The author points out the following about the word “kindness”:
“…the word that she used to translate kindness is the Hebrew word “hesed”. It’s a word that refers to a strongly bonded relationship where one party continues to be faithfully involved with another because it is the character of the first party to do so.”

What leaped in my heart is the fact that no matter what I feel, think or say about God right now, His character will not allow Him to leave me in this desolate place. He will rescue and redeem because it is His character and His love for me that propels Him to do so. My rescue and redemption does not depend on me. If it did, I would be in a lot of trouble right now. There has been something very freeing for me in that. This is something that has allowed me on some level to enter more deeply into my pain and grief knowing that at the bottom I will find God. The following phrase is what the author says of Naomi but also what I am holding onto for myself and my children:
“…would assume that He is working quietly in her soul, redeeming everything that has happened, everything she is feeling, to direct her to Himself.”

157 Days and Not Much Change

There has not been a lot of change in the past week. Travis is still having headaches and mental confusion even with the increased steroid dosage. When he gets a headache, there are other symptoms that come along with it. It is more like an “episode”. Because of the cognitive and processing deficit, Travis usually does not tell me he has a headache. His cognitive ability just does not logically take him to the next step of what should happen, problem solving in essence. I have learned to read his signs pretty well and usually know when his head is hurting. I then ask him to give a number for pain based on a scale of 1 to 10. If it is anything below a 5, I usually hold off giving him pain medicine. Because this is not a typical headache but is based on a tumor and what is going on in the brain, he can jump from a 3 to 9 in about 5 minutes. So I check back in with him about every 5 minutes. Once the he gives me a number that is over 5, I give him pain medicine. While he has the headache, he is very off balance, there is a decrease in messages reaching the right side extremities, his mental confusion is increased and he can answer a question in a word or two but that is about it. Once the pain medicine kicks in, these symptoms drop back down to baseline, never really are gone but are much less pronounced. Because of the fact that the increased steroid dosage has not helped, these symptoms could represent tumor growth and progression but there is no way to be sure until Travis gets his MRI.

There has been a definite increase in fatigue on the backside of this round of chemo treatment, much more so than last time. So we have learned to manage activities based on that fatigue level.

I know that many of you were not able to get flu shots for one reason or another. Typically, flu season is over sometime in April. I have been monitoring the CDC website and there has been a dramatic decline in cases already far Florida. If this decline continues over the next few weeks, then I think the risk of exposure would be over for Travis and you could visit at that time. I will post an update here letting you know when that is possible and once it has been cleared with his doctor.

A little quiet this week, Travis has PT (twice) and OT this week.

Many of you have asked what a typical day looks like for me. So, here goes.

Most days start around 7:30 a.m., Travis has two injections (blood thinner and baseline insulin) that he has to get at the same time each day. After that, I usually let him sleep a little longer while I take a shower. Then I get him up. The process of getting him ready takes about an hour. On the days where he takes a shower, I have to do more for him than normal because of the fatigue. He has a list of things on his bathroom mirror that he follows but it still requires prompting and supervision on my part. So even in the process of getting dressed for the day, we still incorporate mental and physical therapy. I then test his blood sugar before breakfast. I get Travis some breakfast and while he is eating, I give him his insulin (based on the testing) and his pills for the morning time. Then I eat breakfast. Usually the children are already at the dining room working on school. So I spend what time is left, helping with school, doing whatever tasks I need to take care of, etc. If it is a day that Travis has therapy at Moffitt, then he usually just relaxes in his recliner during this time. If he does not have therapy that day, I take him over to his recliner and give him his exercise sheet. I still have supervise somewhat as he tends to lose track of what he is doing or does not understand the directions of how he should do the exercise. After his exercises, he relaxes a while. If we have therapy for Moffitt, we leave for that around 10:00, going by Starbucks on the way. (Travis has developed quite a craving for bacon egg and cheese sandwiches during this time. Sometimes that is all that he will eat.) While we are at Moffitt, Helen (Travis’ mom) sits with the kids at the house helping facilitate school and chores.

Therapy takes about an hour and we are usually back home by about 12:45 or 1:00. I test his blood sugar again, get some lunch fixed for him. While he is eating, I give him an insulin shot (based on testing) and his pills for the afternoon. Hopefully, he is eating what I fixed, otherwise I have to spend some time figuring out what he will eat and getting him to then eat it. During this time, I am usually eating bites of my lunch here and there. After lunch, he goes back to his recliner and takes a nap for the afternoon. While he is napping, I finish school with the kids, teaching whatever needs to be taught and helping with any difficulties that they are having with their school work. By the time school is over, Travis is usually awake. One of the kids then does some therapy exercises with him. Sometimes, I get a little breather here before having to start dinner. If dinner is being brought in by someone, then my breather gets to be a little longer. 🙂

I usually have Travis come in the kitchen and sit at the bar (change of scenery for him and it keeps him moving) while I make dinner. While he cannot really carry a conversation, I talk to him as if he can. He usually makes some responses here and there but overall does not say much. When dinner is ready, we sit down to the table. I test Travis’ blood sugar again. I then bring him a plate of dinner food. While he is eating, I give him his insulin shot (based on the testing) and his pills for the evening. Then I get a dinner plate and sit down. This is the one meal that we all sit at the table so it usually quite entertaining to say the least. (Chuck and Helen are usually here for dinner.) After dinner, the kitchen gets cleaned up and things put away.

After dinner, depending on what the schedule looks like, we might all go in different directions. This is where Chuck and Helen have been a huge help. Wether it is baseball practice, keyboard lessons, youth group, social activities, etc., they shuttle the kids to and from wherever they need to be. It has helped the kids I think to maintain a more “normal” schedule even though everything else has been turned upside down. If Travis’ parents were not here, I do not think that would have been possible. I am usually wiped by this point in the evening. Travis sits in his recliner and I sit on the couch. We watch game shows on tv (more mental therapy) and then he usually heads to bed between 8 and 9. I test his blood sugar one more time before bed and then he gets his last injection of the day. I then usually head to bed between 10 and 11.

Most nights, I wake up several times as Travis turns and moves in the bed. I am still alert enough to know if he is trying to get out of bed by himself or if he is in any pain. So sleep is not always uninterrupted but I think my body has learned how to adapt, similar to when you have a newborn.

That is a typical day, sometimes other things get thrown, appointments for the children or me, grocery shopping, laundry, etc. but I think overall, we have all learned to live in this new level for now.

151 Days and End of Round 2 of Chemo

This past week has been busy, interesting and never a dull moment. Travis finished up round 2 of the chemo on Saturday evening. He seemed to do well in terms of no nausea and vomiting. I did however, this week notice an increase in his fatigue level. He also began getting headaches again last week along with mental confusion. This usually indicates inflammation and swelling in the brain, most likely due to the tumor. A call was placed to Dr. Pan’s office and he decided to increase the steroid dose to see if that would help. It did help with the headaches but the mental confusion seems to have remained. On the other hand, the increased dose of steroids has made Travis much harder to manage. He is more stubborn and belligerent, putting himself in situations that are unsafe simply because he thinks that he can do things that he cannot do. It has made for an exhausting weekend for me being in a state of hyper vigilance with him. Yesterday, the headaches came back. We are discussing with the doctor’s office what a solution might be here. He is still getting physical therapy twice a week and occupational therapy once a week.

There was the usual phone calls regarding insurance issues and social security issues again. All it takes is for one errant keystroke in Travis’ file by someone and our world seems to get thrown into a tailspin. I then spend hours on the phone trying to first of all speak to a live person and then trying to get the situation rectified in a timely manner.

Brett started his baseball games this weekend. In the very first game on Friday night, he collided with the short stop while they were both going for a fly ball. They knocked each other to the ground and Brett had the wind knocked out of him. He also had a swollen eye and a cut right under his eyelid. We took a trip to the ER and he received 7 stitches. We later discovered that the other player suffered a concussion as well. He will get his stitches out on Wednesday.

It seems that we are in a season of life where it is never just “one” thing right now. Things seem to come at us in multiples. I think that aspect and the fact that those multiples are accompanied with heightened emotions and mental processing makes a week seem like a month. Helen (Travis’ mom) made the comment that she felt like February lasted forever and would never end. I commented that I feel like these five months have lasted forever. When I typed the title for this update and I stated that it had been 151 days, I thought that it could not be right. It feels like is should be longer than that somehow. Right now, for me, a day feels like a week sometimes.

Although there are still moments and even days when my life still feels surreal, there is a level of acceptance of circumstances. It does not mean that I still do not wish to go back to what life was before and somehow never have to experience Travis’ brain tumor. With that level of acceptance though comes a despair. A despair of not knowing where the “end” is and what it will look like. It feels like I have been doing this forever and will continue to do this forever. That is wearying in and of itself. I made the comment the other day to someone that I feel like I will be broken and shattered forever. That the words “broken” and “shattered” have become who I am rather than something that will pass in my life. This person then stated to me that even though I could not see it right now or feel it right now, God would not leave me broken and shattered. It goes against His very character, nature and ultimately, His love for me to leave me in my broken and shattered state. The rubber meets the road though when I realize that He operates on His timetable and not mine.

Is God still good? Yes. I still see Him show up in ways for me and my family every week. He just does not show up in the way that I want Him to. It does not make Him any less good but also does not make it any less painful in my heart. I am beginning to understand on a whole new level words like “anguish” and “affliction”. These words are reserved for unresolved pain and hurt with no immediate rescue in sight. It is not a very pleasant thought for most of us Christians. We do not like those words and we would like to pretend that they have no place in a relationship with the Trinity. Yet in the Scriptures, I do not find that to be the case. We can suffer with anguish and affliction, struggling with God in the middle of the night, and yet still believe in Him and His goodness.

I think there is also a promise (my belief here from some recent reading I have been doing in a book called Shattered Dreams) in being honest in our suffering, anguish and affliction. A promise that guarantees that honesty in these areas is what produces hope and ultimate joy. The following is a quote from the book: “Don’t sanitize the story. Naomi (from the book of Ruth) did not say, ‘I’m having a hard time. Most nights I cry myself to sleep. But He knows what He’s doing. My family died for good reasons that I cannot see but I claim by faith. I know nothing enters my life without passing through His tender hands. My hope is in the Lord.’ That may be what we think she should have said, what we wish she had said, but it’s not what she did say…The Western church has become a community of either the victorious or the acceptably broken. Either we speak glowingly of our love for Jesus–usually because the blessings are abundant–or we struggle nobly through hard times, convincing others and sometimes ourselves that we’re doing better than we are. With each other we’re more proper than real, more appropriate than alive…Naomi broke the rules. She stood before her community admitting who she was (bitter and broken) rather than who she should have been. The result was more pain, and although not right away, more hope. Had she deadened her pain and behaved appropriately, she would have found the contentment of Buddha and missed the joy of Christ…I read no hint of rebuke for her depression or bad attitude. Perhaps ugly struggles invariably precede real joy.”

Those of you who know me well, know that I have always tried to be someone who is real and honest. I am not one who particularly ascribes to saying the correct thing over the honest thing. It is just not who I am. This struggle for me has been no different. The only way I have known how to walk through this has been with honesty, as ugly and brutal as it may have been at times. Baring one’s heart, soul and struggle with God does not happen within the confines of a neatly wrapped package. Rather it probably looks like a train wreck most times (feels like it most times too). I am sure that my honesty during this time has made it uncomfortable for some, painful for others and challenged even others. It would be so much easier for me to behave appropriately than honestly admitting my pain. In the end though, I do not think that will lead me to much joy. Somehow, it also does not seem to fit the character of who I know God to be or the things that are written in Scriptures. So, there is a tiny glimmer of hope in my soul right now, that if I continue to chose to walk through this experience as emotionally honest as I can that God will inevitably lead me to an incomprehensible stream of joy that I have never before known….regardless of how painful it may be now or whatever the outcome.