Detailed Update on Moffitt Visit

Sorry it has taken me so long to get this out. Thursday and Friday were a little crazy.

Before I start talking about the doctor visit, I need to share something first. In the past few days, God has been bringing to my mind certain passages of Scripture. These passages all center on one thing regardless of the story or the context. The passages would list some scenario or situation that was insurmountable. After the description of the situation, the next words are “But God…” In our house over the years as we navigated our own marriage relationship and the relationships amongst our children, there were times that someone would say, “I am sorry but….” The common response is our house that it was not acceptable to say “I’m sorry” followed by the word “but”. Because the word “but” negated everything that was said before it and anything that was after it was really the truth. God conveniently reminded me of that too. God has told me that anything I hear a doctor say or any time that I speak of Travis’ condition, I am to add the words “But God…” to the end. So that is what I am going to do from now on.

The doctor believes that this tumor has probably been growing for less than 5 years and probably more in the last 2 or 3 years.

He thinks that is a different tumor than what they originally told us at TGH. He believes that it is a Gliomatosis Cerebri, which is a grade III tumor. He is making that guess based on how the tumor acts on MRI films. Grade IV tumors (called glioblastomas, which is what we were told originally) tend to “shine” more on MRI and Travis’ tumor only shines a little in one area. We cannot make a definitive diagnosis because that would require a greater biopsy section which is not possible. These tumors are very rare, Dr. Pan has only seen 3 or 4 in his 5 years at Moffitt. Most other places like Duke and Harvard have seen very small numbers as well. The pool of information to draw from is very limited but God’s pool of information is limitless.

These tumors have a tendency to transition from Grade III to Grade IV. The treatment that is suggesting is aggressive and would be the same treatment if it was a Grade IV already. The treatment will not stop it from transitioning. But God….

The goal of the chemo (pill form) and radiation is to stop the tumor from growing. That would then be considered remission. The treatment will not get rid of the tumor, it is here to stay…But God. The treatment may or may not shrink the tumor….But God. With remission with this type of tumor is not a matter of “if” Travis will come of out of remission. He will come out of remission, the only question is how long before that happens. When it happens, we start again…..But God.

Because of the diffuse nature (cobweb structure) of the tumor and because it is in the deep center, they are going to have to radiate a large portion of his brain. When you radiate, you kill normal brian tissue right along with the abnormal. For that reason, the doctor has told us that his memory is going to get much worse and he will probably lose big sections that he will never get back….But God. They will have Travis working very closely with a cognitive therapist and a Neuropsychology doctor to help Travis figure out new ways to map his brain in order to access information (similar to brain trauma patients). That is a long process though and is likely to be very frustrating…But God.

Mapping and planning for radiation will start next week with the tentative date of November 8th to start chemo and radiation.

Fatigue seems to be the biggest side effect from the chemo. Although there are others like low blood counts (he will get weekly labs to check this), nausea/vomiting (he will have anti-nausea medication and that seems to counteract that mostly). We have not had our radiation consult so we are not sure of the side effects from that yet.

Radiation will take place 5 days a week and chemo 7 days a week. This will continue for 6 weeks. Travis then gets a 3 week break. During that break, they will rescan to see how the tumor is responding. If it is not responding, we go to another plan. If it is responding, then we go to phase 2.

Phase 2 will consist of the chemo pill for a 5 day period every 28 days but the strength amount triples. This will last a minimum of 6 months.

We are currently researching as much as can on this gliomastosis cerebri and the American Cancer Society is researching for us as well.

We continue to be encouraged and uplifted every day by your messages and cards (see our photo gallery for pictures of our Mantel of Encouragement).

Please continue to pray for the children as they are struggling.

Hopefully I will soon be posting some family portraits that a lovely woman did for us.

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Yesterday’s Doctor’s Appointment

This will be a quick update as I am on my way out the door. I will post a more lengthy one later.

I really do not know how I feel about the appointment yesterday. I figure it is a good sign that I am not a pile of emotional mush right now.

The doctor did tell us that he thinks it is a different tumor than what they originally told us. It is not any better or any worse about the same. So the American Cancer Society is researching that new tumor name for us today and I will post more on that later.

Planning and mapping for radiation will start next week. The tenative plan is start chemo and radiation on November 8th. (I will map out more of the treatment in the next post.)

Know for now that we are good. Please continue to pray and I will update later.

Strong

So many of you have remarked about me being strong during this trial. I have been thinking a lot about the word “strong” over the last few weeks. I will admit that my definition of “strong” has radically changed in the past 17 days.

I think most people would characterize someone as strong who seems to be in control or who appears to not be ruffled by circumstance. I know that I used to think that. Now I think that person is weak because they chose to not let themselves be realistic about the circumstance.

Strong is being willing to let the little things not matter anymore and live in every moment that you are given.
Strong is picking up the phone and asking those who care about you the most for help with mundane or big things. Things that you cannot spend the time or energy to handle right now.
Strong is knowing that your husband, who is terribly confused, is watching you for whether he should be afraid or worry.
Strong is also sitting on the bench with a friend and having an emotional breakdown because you need to cry in order to go on.
Strong is gathering friends and family closer than they have ever been in your life.
Strong is being willing to face the fear inside of you while you struggle to keep faith and hope alive.
Strong is railing at God one minute, petitioning Him for a miracle in the next moment and then praising His goodness, faithfulness and love in the moments that follow.
Strong is knowing that God is okay if you are mad at Him.

One of the things that God has done often in my life is speak to me through songs. There have been many times when I awake in the morning that there will be a song playing in my head. I may not have heard the song in years and may not be very familiar to me but it always speaks directly to the circumstance that I am in. I always know that God is speaking to me through those.

On Monday, I awoke with the song “I Hope You Dance”. It has played over and over in my head all week long. I know what He is asking me. Will I chose to dance with Him during this time or will I leave the ballroom?

Strong is choosing to dance even though my heart is breaking and there are tears streaming down my cheeks. I will chose to dance. Lord, hold me close!

Specific Prayer Requests

Most of you have been asking what you can do or for specific ways that we would like you to pray.

First of all, let me say that even though most of you feel that prayer is so little at this point and you wish you could do something more tangible, to us it is everything. It is our first, best and greatest weapon right now in this season of our life. It comforts Travis and I to know that so many of you are marching into God’s throne room on our behalf. When I read the messages to Travis that you have been posting here and on FB, his comments tend to vary but they all center around the fact that he has never heard of so many people praying for him. It has comforted him and our family more than I can begin to tell you.

As for specific prayer requests, they would be regarding the Neuro-Oncology appointment tomorrow as the first request. I have really been praying and seeking God about this appointment there have been several things that I have begun to notice and ask God for.
1. I am dreading this appointment tomorrow. To me, it is a necessary evil at this point and yet I continually remind myself that God is in control and He alone determines the outcome here. No information that I hear tomorrow will define our outcome, only God.
2. I have been asking God to filter the information that I and Travis dad, Chuck, hear tomorrow. That He open our ears to hear what we should and that anything that we should not hear would fall to the ground. I know that probably seems weird but at this point, I could go one of two directions: complete denial or blind hope. I can do neither of those knowing that I have four children that have been entrusted to me as well. It is as much about them as it is about me at this point.
3. One of the things that I noticed the whole time that Travis was in TGH was the fact that every time something was spoken to us about his condition, the Holy Spirit inside of me was either confirming or denying the information. I am praying for that to happen tomorrow in a much bigger way than ever before. That prompting of the Holy Spirit will be the “report of the Lord”. I will trust in that report and nothing else.

I would love to assure each and every one of you and myself that God had indeed spoken to me and assured me that He was going to heal Travis. He has not. The only thing that He has said was that this was a road that we were going to have to walk but at the end it was all good. I could let myself read so much into that statement. But then faith would not be present just blind hope. I could also in any given moment let the enemy get me over the barrel with debilitating fear of the future. I will settle for neither of those options.

A friend of mine recently printed me an excerpt from a father’s blog regarding his daughter who has cancer:
“Fear or faith? I heard this question recently on a TV show and it has stuck in my mind ever since. In the context of the show someone presented the question, you can either fear the future or you can have faith in God that there is a reason for everything and more to life than just our time on earth. It is a statement that seems simple, but probably oversimplified. I sit here today and can tell you I have complete faith! However, I am completely scared! I do not fear the future, I believe that everything that has happened and yet to happen has a purpose. But with all things, it is only natural to be nervous or scared of what the future will bring or what that next step might be. I guess I am faithfully fearful, if that makes any sense! I sit here and know that Sarah has such complete faith. Her faith inspires me every day to try to be a better person. However, I can completely understand that she can be scared as well. I guess that is where we are today. I still have faith that Sarah can be healed, but I will not lie and tell you that I am not scared.”

That pretty much puts into words everything that has been in my heart and mind in the last week or so. So for now, I am faithfully fearful.

Update 10/25/10

We had a great weekend. Travis had his first excursion on Saturday night. He went to Wyatt’s last football game (see photo gallery). The Predators have not won a game all season. They had decided that night that they were playing in Travis’ honor and they won! Wyatt was also recognized as for academic achievement that night and made some great plays as well.

Sunday, Travis and I both had a massage. Then an amazing lady from our church came and took family portraits (hope to post those soon). We then all ended up in the living room sprawled around watching football.

Today, he had some physical therapy this morning, visited with friends and will be having occupational therapy this evening.

Since being home, he has gotten stronger every day and in the last few days has not only been talking louder but carrying on conversations. He will be getting speech and cognitive therapy beginning next Tuesday.

We have an appointment Wednesday to have the staples removed and a repeat CAT scan to make sure the shunt is working properly. On Thursday, we will be heading to Moffitt for our first appointment with the Neuro-Oncologist.

I have done a lot of praying, as I sure that most of you have. I am praying God’s direction and guidance not only for every moment of the day but also for each step that we take towards treatment and a future. Basically, we need a miracle. I understand now more than ever the desperation people face when faced with uncertainty. My family and I are trying to let that desperation drive us to God instead of finding all the answers in man or other things.

We have an outing planned tomorrow to Red Robin. So I will post pictures.

Thank you for all your prayers and outpouring of love. It has been more wonderful than I can even begin to tell you.

Chaos and Calm

Yesterday was crazy to say the least. Issues with Medicaid was causing delays in getting medical supplies, therapists to the house and appointments scheduled. At one point, all 3 phones were ringing and my email was going trying to get everything resolved. On one hand, I was thinking that this was the last thing I needed right now but on the other hand, it was a good distraction.

This morning things seem to be resolving and God is using complete strangers at both hospitals to push things through and get the help that our family needs right now.

I know that there were prayers being lifted last night for me to have a peaceful and restful sleep because last night I slept better than I have since all this started 13 days ago.

I am so glad that through this my in-laws and I have such a great relationship. In a highly stressful situation, where we could be at each throats, we have been able to sit and cry and have conversations that we never thought we would. I cannot imagine walking through this not having a great relationship with them. They are moving their travel trailer onto our property and will be living next to us for however long.

Your prayers, messages and encouragement have been amazing. If you have time, you might read other people’s messages. I am sure that you will be encouraged.

Our verse today is Joshua 1:9, “Have I not commanded you? Be strong and courageous. Do not be terrified, do not be discouraged, for the Lord your God will be with you wherever you go.”

As Simple As It Gets

We are finally home! It did not end up happening until after 9:00 p.m. but for the first time in 11 days, Travis was able to sleep next to me in our bed.

We have a pretty crazy day planned. Home health will be in and therapy will begin. Phone calls have to be made to set up appointments. Emailing and researching treatment options and facilities. Some point today, my house will have a ramp and more medical equipment than we have ever had. These things do not matter to me right now, fill my house to brim with equipment if need be.

I wish I had words…for my husband…for my self…our children…our family and our friends but I seem to be at a loss. I seem to struggle to string together anything that helps right now. Those of you who know me, know that is indeed rare for me. So words have become very simple these days.

Because of Travis’ confusion and memory, the doctors wanted me to write down what is happening to him so that he could read it. I could not bring myself to do that. Something in me, maybe the Holy Spirit, was not going to put in writing his diagnosis. I prayed and struggled through that most of that day as to what to do. Finally, God gave me what to write. Yesterday morning, I went into Travis’ room and wrote on the white board:
Four things you need to remember
1. God is in control
2. I love you
3. I am here
4. We are working on getting you better
These will now be written on an index card that he can carry around and on a posterboard for the house. As simple as it gets.

Travis’ main questions recently are:
“Where are the kids?”
“Where are you going?”
“Where are my friends?”
I reaffirm every time that they have been here and he will continue to see them throughout the days whether he remembers or not. As simple as it gets.

Yesterday in the chaos of trying to go home and other things, life became very surreal (as if it had not been already). I had to have conversations with Travis and healthcare professionals that I never thought I would have to have at the ages of 38 and 39. One moment while sitting with Travis on his bed, I asked him what he was thinking. He said, “That if I go to sleep, I might not wake up.” Sometimes that is as simple as it gets.

I want to demand guarantees from God right now, issue ultimatums, make bargains like Abraham did but He is silent when I do that. Only says, “Be still and know that I Am God.”

Take time today to hug your husband, tell him you love him and cherish every moment because in the end, that is as simple as it gets.

The Journey Continues

First of all, let me thank each and every one of you for all your messages, prayers, emails, and love. It has been hugely encouraging to us and has kept us on track more than once. I read each and every message to Travis and have been repeating over and over to him how much we are loved, supported and prayed for during this time.

This may be one of the hardest updates that I will post….and then again, maybe not. The test results began to come in over the weekend. We needed some time as family to process and deal with the information before making it public.

Travis does have a bilateral tumor in his thalamus region called a glioblastoma. It is a high grade at this point. Instead of the tumor being a mass (like a ball of play-dough) it is called infiltrating (like a cobweb). That is what is made is so hard for them to see it. Because of that factor and because of the location, surgery is not an option and the treatment is radiation and chemotherapy. Until Travis, only 9 other people had been documented with this tumor. Travis makes the 10th. Because of the high grade, we will be starting radiation pretty quickly (most likely next week) and chemotherapy about the same time. We have to still meet with the neuro-oncology doctor about the latter.

While I know that each of you love us and mean well, please do not email, call or message me with articles, prognosis or treatment plans. I have done plenty of research in the last few days and am well aware of all of these things. I also know about nutritional ways to treat this and holistic doctors, so please do not send us this information either. Know that we are seeking God with every step and praying every moment and have complete peace about the steps that we have taken so far.

I also know that all of you would love to run down to the hospital to visit him now. Please understand that we would love to see you and visitors are a very good distraction for Travis right now (see Travis’s current status below) but understand that it can be overwhelming. I have some wonderful friends that are running interference with me regarding visitors and that we may ask your visits to be short and sweet and you may have to wait to see him as well. Know that my husband’s well being and my sanity come first at this point.

I talked to the children over the weekend and we are all hanging in there. We cried a lot and talked a lot but we are going to live each moment and enjoy life. They have a good support network in their jr. high pastor and his wife, as well as others in our church. I know that God has surrounded us with those people and all of you for such as time as this.

Travis’ status:
Currently they have an order in for a private room transfer. One did not open up today so he is still in ICU. We are hoping that maybe tomorrow we can move to a room and in a day or so be home. We are working on accommodating things at the house. He has lost a lot of strength and mobility but will be working with physical therapy to get that back. You need to know that Travis is not always cognizant and responsive. He recognizes faces but he may not respond to you all the time and he tends to look off in the distance. Since they determined today that the air is almost gone and the fluid is gone, they are determining the cause of his status to either be tumor effect or psychological or a little of both. We are working on both fronts but you need to be realistic about what Travis is like now and not who you remember him to be.

What can you do now:
Continue to pray for God to step in with a mighty miracle. Also, when Travis comes home, I think I will know more tangible ways that people can help as well. Grow Life Church has started an account for our family to help with bills and such. If you would like to donate, please contact them.

I know that we are surrounded by family and friends and that we will ride this out together. Keep the encouragement, messages and love coming, it helps us get through every moment of every day.