The Longest 12 Hours

Well, it has been nothing but eventful in the last 12 hours. At about 2:00 a.m., Travis woke with a headache. I was a little concerned but I gave him some ibuprofen and told him to wake me if it got worse. At 4:00 a.m., I heard him get up and the next thing I heard was him vomiting. I got up to help him and at the same time called the radiation doctor on call at Moffitt. They wanted us to head to TGH ER so that that the neurosurgeon could check out the shunt. So off we went.

By about 9:30 a.m., they had determined that they thought the shunt was fine and that the headache was tumor related and sent him home with pain meds. Upon returning home, Chuck and a family friend took Travis and headed to Moffitt for his treatment. I put Brooke in the car and headed to All Childrens ER for some problems that she was having. (More explanation below.)

Travis was sick several times today, the doctor is pretty sure that this is the effects from the chemo showing up. They changed his anti-nausea to something sublingual so that he will not throw it up and it would be able to get into his system. They did up his steroid back to 3x a day as well. He will also get an MRI on Monday. They are looking to see if the tumor has affected the spinal column at all.

Brooke’s issue is more of a personal nature but they have determined that nothing was hugely wrong. They did send her home with some Progesterone and we have an appointment on Monday with a specialist.

It has all been a little too much for me today, I must admit. I wished there had been two of me today but there wasn’t. I am very grateful that my in-laws and our family friend were here to help carry the load so I did not have to split myself in two! 🙂

Keep praying, as I know that you are. But understand that we are emotionally, mentally and spiritually overwhelmed. It is so hard to explain to people where I am at with things emotionally and mentally because unless you been there, you just can not begin to understand what a day looks like for us.

We will are definitely learning a new kind of “normal” and I do not really like it very much.

Treatment #1

Today marked 42 days when I entered the ER at TGH with Travis. Today he received his first round of chemo and radiation. He swallowed the chemo pill at 4:00 p.m. and the 5:00 p.m. radiation treatment at Moffitt only took 15 minutes. With that, we have begun the new leg of this journey.

Travis seemed to handle everything so far very well although it is early in the process. He said he did feel a little weird after the radiation. A friend that was with us remarked that at least Travis wasn’t glowing and Travis said, “Well, I feel like I’m glowing.” That seemed to subside later in the evening.

We went straight from Moffitt and grabbed a bite to eat and then on to One City’s I Love Africa event. I could not have imagined a better ending to this emotional day. We were able to see so many friends and get hugs from all of you. I know that all of you have been praying and will continue to pray but it was so nice to see all of you this evening.

We were also able to rejoice with Mike and Deb and all that they are accomplishing in Africa and also, even in our situation, get some perspective. Even though we face an uphill battle, many others do as well and for different reasons. Our battle cannot be helped by anything but treatment options and prayer but that is not so for the people of Uganda. We can do so much more for them to make their uphill battle easier. We can help them achieve victory and I believe we all, our family included, have a mandate from God to do so. We are to care for the “least of these”. It was refreshing to be reminded that even as our family is in a huge battle, we can help others in their battle as well. For more information on One City Ministries and how you can partner with them to accomplish things in Africa, please visit http://www.onecity.ws

Tomorrow’s treatment is at 12:30 p.m. and then we will see the Radiation Oncologist to touch base about the treatment plan.

Thank you again for all your prayers.

A Song Written by Wyatt

I have let my children and in-laws know that they can post on these pages as well and share their thoughts.

Wyatt wrote the following song the other night.

Lights Out

Verse:
Wish I could physically fight this cause if I could I’d be done right now.
Wish I could physically fight this for all of us right now.

Chorus:
Lights out, I gotta go now.
Lights out, I got to help him somehow,
I got to help him somehow
Before his lights go out.

Verse:
I know I can’t physically fight this
But I know I can mentally fight
I know I can mentally fight this
Cause I’ve got God on my side

Chorus:
Lights out I gotta go
Lights out I got to help somehow
I got to help him somehow
Before his lights go out.

A Deep Breath

Today Travis had OT (occupational therapy) and we also met with the nutritionist. Then we come home for a few hours to rest and then headed back to Moffitt for a radiation “simulation” session. (See photo gallery)

The simulation was just to line things up and see how the plan they come up with was going to work but no radiation was actually delivered today. Everything looked good so Travis’ first treatment will be tomorrow at 5:00 p.m.

If everything goes well during the treatment, the last radiation treatment will be January 3rd. The only reason that this might go longer is if during treatment, Travis’ blood counts fall to a dangerous level. If that happens, they stop treatment and get his levels back where they need to be with transfusions. Once the levels are back in the safe range, treatment will resume again. (Another point to pray on.)

Interestingly enough, when we left Moffitt today, Travis was very lucid and clear and began to ask a lot of questions about what was going on. He was very specific in asking for percentages and outlooks. He seemed to do very well with all of it. He does not seem to be worried about starting treatment and seems to be handling the information well. Of course, he may not remember any of this tomorrow but today was a good moment for me just to share with him where everything is at.

All day long, I keep hearing the phrase in my head, “Take a deep breath”. I have tried to do that every time I heard the voice. If I thought that the last 40 days were an emotional roller coaster, I know that the ride is really just beginning and the hardest is yet to still come. I am trying to be optimistic but I am also trying to be realistic.

I have tried to prepare the children for how this treatment will affect their dad but on some level there is no way that I can prepare them. They will just have to experience it and learn to navigate it themselves. (Another point to pray on.)

Take a deep breath, tomorrow we begin a whole new phase of this journey.

New Life

Yesterday was an important day in our extended family…we added a new member. Ian Thomas DeVore entered the world (see photo gallery). It started me thinking about new life among other things. We have waited for 9 months for Ian to make his appearance. My sister and her husband have waited much longer and have had to walk a pretty difficult path to get here but I know that they would tell you that is was worth it.

Interesting to me is the fact that in midst of the pain that we are walking through right now, new life was born. This path of pain has not only affected me and our children but our extended family on many levels as well. And yet, in the middle God brought us joy in the birth of Ian…a long awaited child to expand the family.

Part of me thinks that is just like God. As much as none of us want to walk this road right now, along the way God is offering moments like these. Moments that remind us that life goes on, that hope is present and He is here.

Sometimes joy comes in the morning but sometimes God sends joy in the darkest part of the night.

Welcome to our family Ian. My prayer is that you will grow up to be a mighty man of God and valiant warrior in the Kingdom.

And the Two Shall Become One…

About nine years ago, our marriage was not in a great place. We seemed to be at opposite ends of the spectrum. Two people who were roommates in a house but happened to share four children. During this time, I convinced myself that I did not want to be married anymore. God basically “unconvinced” me, very strongly I might add! 🙂

After that, I began to wonder what it truly meant to become “one” as the Scriptures talked about. Most of you who attended the FISH group at the time will remember the “animated” discussion that we had about “oneness” one night. (That night, I wished I had never brought it up!) To me it seemed that it had to be more than physical. God must have meant more than that and that God desired more for our marriage and somehow it was tied up in that word: “one”. I told God that He was going to have to show me what that meant since I did not have a clue and there seemed to be differing opinions on the subject. The only opinion that mattered to me was God’s. Little did I understand or realize when I uttered that prayer what might happen.

Over the next few years, even though I barely realized it, God begin to orchestrate “one”. It was not pretty, most of the times it was downright ugly. Emotional baggage was brought to the surface and made us so miserable we had to deal with it. We both had to learn not only how God saw us but also how we were supposed to see each other. There were extreme ups and extreme downs. Above it all, our commitment was that we knew God intended for our marriage to be more and we were not willing to settle for anything less. At times, this attitude ticked both of us off at each other more times than I can count. In the last six to seven years, we have had a marriage that most people never live in. When we were not looking, God had made us “one” in every sense of the word. Our hearts were “for” each other in everything that happened. We were truly the love of each other’s lives and passionately lived life together on many levels.

When Travis went into the hospital, a dear friend gave me a banner scarf to wear. It had the word “Beloved” written on it and the verse Song of Solomon 6:3, “I am my Beloved’s and He is mine.” She placed it around my neck and told me that I need to remember who I was right now. I took those words in context of my relationship with God, which is probably how she meant them. On the day that Travis had his surgery for the shunt placement and the biopsy, God used that scarf to show me something else. Travis was still coming out of anesthesia and still a little groggy. We had some very dear friends in the room during one point when he was awake. He asked me about the surgery and what the doctors had done. I told him about the shunt and that they had done a biopsy. He then whispered the word “cancer”. I told him that no one was saying that yet. He began to sob and I became undone. I leaned my forehead onto his and cried with him. My friend shared later, that during that moment when we were crying together and I was comforting Travis, my scarf was hanging in such a way that the only words that she could read were, “He is mine.” That scarf represents not only my “oneness with God but also with Travis in every sense of the word.

Two weeks ago in the counselor’s office, I was talking through the immense waves of grief and sorrow that seem to just come over me. Travis seems to be a “shell” of who I know him to be. Sometimes I catch glimpses of him but for the most part he is hidden. The man that I know as the lover of my soul, an amazing father to our children, a loyal friend to so many and a fierce warrior not only in the Kingdom of God but for the hearts of others, that man seems to be lost somewhere inside. The counselor shared that because we are “one” with every piece of Travis that disappears or seems to die, something inside of me does as well. It was like the lightbulb went off. It made sense. I was grieving not only what I see happening to Travis but in the process what is happening to me as well. When you are “one”, you are blended, no beginning, no end, no way to extract yourself from the other.

Even though it hurts immensely right now to be “one” with my husband, I would not trade it for the world. I hope you consider what “one” might mean in your marriages. Life is short….do not take it for granted!

Marathon Tuesday at Moffitt

Things went very smoothly today at Moffitt, long day though. At noon, Travis was fitted with the mask that they will use during radiation. He had a speech assessment, she will see him again the week after Thanksgiving. Then he had an occupational therapy assessment, she will see him again next week sometime. He was given some homework, namely making brownies with the girls and making a pizza loaf (old family recipe) one night for dinner with the family . My husband makes a mean pizza loaf if I do say so myself! 🙂 So homework will be fun and enjoyable for all. Yeah! At 5:00 p.m., he had his updated MRI that they will use for planning purposes. The physical therapy had to rescheduled for Friday since the therapist was sick. We also stopped by the pharmacy and picked up the chemo drug and the anti-nausea medication so that we are prepared the first day of radiation.

He was pretty tired after all that….well, we all were to tell you the truth. A praise report, the OT said that she noticed very little difference today in the right side and left side strength. So God (and the exercises) have been working.

Right now, Travis and I are trying to learn how to navigate this new dimension to our relationship, namely patient and caretaker. It is so different then if he had the flu or a cold because it eventually ends. This is a little more in the long haul kind of thing. One of our challenges is this. The area of the brain where the tumor is, involves how you “amp” yourself up for a task, so to speak. So more often than not, Travis will say that he is just too tired and can not do something and yet on some level, I am supposed to push him. Great! 😦 Apparently, when I was out of the room at one point during his OT visit, he told the therapist that I basically “kick his butt”! At least HE is clear on our roles here! Seriously, prayer in this area would be great. Not only that he will be able to initiate and have energy to do things but also that frustration and irritation does not develop on either of our parts.

During the OT appointment, I had the phone interview with the Social Security Office (the reason why I was out of the room for part of it). We are in the process of applying for disability for Travis. That interview was a little overwhelming to say the least. Apparently, when and if he is approved, we will not see a check until 7 months from his last day of work…which is May. He also put in for us to receive Supplemental Income, but that amount will be much less than the disability and we may not see it until December or January. So many of you have blessed us financially and I can look back on the last 2 years of how God has carried us through financially and I know that I have nothing to fear but on some level it is very overwhelming. It feels different when you do not have a spouse to share that responsibility with. Please pray that I will have an overwhelming peace and assurance that God “shall supply all our needs according to His riches in glory.”

Counseling went well with the boys yesterday. The girls go tomorrow. I want to protect my children’s privacy in this as much as possible and allow them to only share what they feel led to share. So, I will not share specifics here. Just now that during the appointments with the boys, they are being asked to handle a level of emotions that most children can not at this point but yet they are doing well with it. They expressed their fear, as well as their anger and a multitude of other emotions. On some level it was very hard for me to listen to our boys express some of the things that they did. Everything within is screaming that this whole situation stinks and I wish that we all could do something different. They feel much the same way.

So today was long in so many ways, emotionally, mentally and physically. It was one of those days where the mountain just stared me down all day. The very real circumstances that we face from one end of the spectrum to the other. The circumstances that require a miracle not only for Travis but for all of us. But I did not turn my back or refuse to face the mountain, I am planning on going over it….however long that might take and however hard that might be. No matter how many bloody knees, elbows, hands or tears that are shed…I am going over that mountain. But not alone…God is by my side….all of you are right behind me!

Visitation with the Radiation Oncologist and a Great Family Memory

Friday we consulted with the Radiation Oncologist, Dr. Yu, at Moffitt. We pretty much knew what to expect, others had explained certain parts of the radiation to us earlier in this process. So there were no surprises there.

Tuesday will be our marathon day at Moffitt! At 12:00 p.m., Travis has an appointment to be fitted with the mask that they will use during the radiation treatments. At 1:00 p.m., Travis has an speech assessment, followed by physical therapy at 2:00 p.m. and occupational therapy at 3:00 p.m. Then at 5:00 p.m., Travis is having an updated MRI.

Good news is that we will not have to be at Moffitt anymore that week. Planning and mapping will take a week to a week and a half. The earliest we would start radiation would be the 16th and the latest date would be the 22nd. So we have a little bit of time still.

Friday night we had tickets to the Matthew West concert. God arranged circumstances so that He could turn a family memory into something extraordinary. We got to meet Matthew West. He heard about our family through the Joy FM and talked to us for a while, letting us know that he was praying and would continue to pray. They gave each of us Matthew’s new CD. They then reserved seats for us. We also got to meet Bill and Carmen from the morning show on the Joy FM. They treated us like celebrities and they were all so sweet and kind to us. The concert itself was awesome and great experience for our family. (See photo gallery) Travis has even remembered parts of the concert in the days that have followed.

Travis is getting stronger. He pretty much can navigate just with the walker with no assistance from anyone else. As he gets tired, he tends to need more help but overall there has been a big improvement. Thanks for the prayers, keep praying!

His memory is still pretty much the same. He confuses events and days and things tend to run together. Sometimes he does not remember anything and then other times he seems to remember some things. No rhythm or reason. The orientation board and the lists have helped me tremendously though.

All the children have appointments with a counselor this week. Please pray for those sessions on Monday and Wednesday. We are all at different parts of this process emotionally. So counseling will not only help the children navigate this situation emotionally but it will also help me and Travis’ parents not only navigate but how to the help the children.

There may not be a lot of medical updates this week but I may still (if you will humor me) share some of my thoughts and emotions during this time.

If you have a chance and are not squeamish about needles, you might want to check out my video on FB. I had to give Travis his first B12 injection. It was pretty funny.

Thanks again for all your prayers, love and support. It has made a huge difference.

Memory Testing Today

Once again, it has been a long day but in so many ways good.

Apparently, both radiation oncologists are away at a conference this week. Really?! Thus the delay in getting started. One of them agreed to come back early and see Travis first thing Friday morning. That means that mapping and planning will probably start next week. Chemo and radiation to now probably start on the 15th. All in God’s timing.

We met another great doctor at Moffitt, Dr. Booth-Jones. God has again strategically placed a competent, caring and compassionate physician within our midst.

She, along with her assistant Brian, did some baseline memory and brain function testing on Travis today. While the testing was taking place with Travis via Brian, she spent some time with a family friend and myself in another room.

She was very concerned and compassionate on how best to help our family deal with not only the immediate situation with Travis but also the additional stressors related to me carrying the responsibility load for the family. We talked about my faith and how much that played a role in this season on life and that was refreshing.

Here is the results from the testing. Travis’ IQ is high average. (I figured if he had any memory at this point, he would probably never let me forget this fact!) That gives them something to shoot for after treatment.

There is no new learning going on right now (which we sort of knew). When given a list of words or a story and asked to repeat it back, his responses are low and with each repeating the number goes down. Interestingly, when shown a diagram and then they removed the diagram and asked him to draw it, he nailed it 100%. She did not see any tremors or shakiness in his writing that would indicate motor abnormality.

He then was given some random tasks to accomplish. He made no mistakes and was accurate but he should have been able to answer more for his age. So quality of mind is there, just no the quantity at this point due to slow response times.

After these tests, about 15 minutes later, they then went back to the original list of words and story. Of which, he could repeat none. When asked to duplicate the drawing, he was able to draw it about 50% accurate.

What does all that mean right now? Dr. Booth-Jones says that the tests results definitely match what she is seeing in the MRI. No surprises for her there. She did say that Travis performed on the tests a little better than she thought that he would. She feels that the brain in intact in all areas but the “on switch” in the thalamus are is just a little faulty right now due to the tumor.

What is the plan based on this information? For now, she wants Travis to devote all of his time and energy into being able to wage the war that is going to take place in his body over the next 6 weeks. After the 6 weeks, she will test him again and compare it to the baseline today. Then we start working on helping him remap which takes time and energy itself. She is not willing to compromise his energy to do this while he is trying to battle the tumor. I agree. She has made herself available to myself and my family at any point in the 6 weeks even though she may not be working with Travis during that time.

How does this translate to home? Several things are going to be instituted actually.
1. No matter how much we repeat information to him, he will not remember it. But if we can transform that to visually then he will remember some of it or know where to find. Thus our Board of Orientation (see photo gallery). The cool part of this day was that we had just heard about visual signs at the doctor’s office and when we arrived home the children had made a sign for Dad and posted it in the dining room of the Important Things to Remember (see photo gallery).
2. We need to encourage drawing and journaling as much as possible along with other mind games: word searches, crosswords, trivia, etc.
3. We need to incorporate as much fun events and outings as we can and as much as Travis’ energy level will allow. Realizing that this may decrease as we get further into chemo and radiation.
4. We will be making him a orientation book with pictures but also names, ages, places, etc.
5. I will be taking pictures of all visitors and happenings every day. These will be labeled with date and event so that each morning we can re-visit the day before. Basically, he will have a picture journal of what has been happening.

That is pretty much it in nut shell except for one more thing. Our family friend asked a very interesting question of Dr. Booth-Jones while we sat with her. He asked that as friends who are eager to help, how do you know when you are helping and when you are just in the way. Her answer was wonderful. She said that our friends need to be like furniture. They are there when you need them and if not, they are content to sit and wait until you do need them. She then looked at me and said that right now the world revolves around Travis and our family, I do not need to feel like I need to entertain or continually answer questions, etc.

So many of you have already been “furniture” to me and for that I am grateful. Until you are faced with a crisis, sometimes you have no idea either how many lives you have inadvertently touched or how many “true” friends you really have. We have been blessed with a multitude of both.