Longest Christmas Day Ever

Well, yesterday was….eventful. I posted on FB at 10:44 am that we were heading home. I guess I spoke to soon. There were complications getting Travis’ medicine, which we could not go home without because he would need an injection the following morning.

The in-patient hospital pharmacy could not fill the prescription because we had insurance! Huh?! They contacted the Walgreens across the bridge but they only had 3 doses and I would have to come back to get the rest. I tried to explain that that specific Walgreens was 45 minutes from my house and that would not really work for us.

Then the Walgreens at Northdale was contacted and we were told that they had 10 does but we could get the rest later. Since that Walgreens was closer to home, I accepted. So we pulled out of the hospital at 2:30 p.m. When we arrived at the Walgreens, they actually only had 10 doses but they were the brand name and not the generic. Medicaid will not pay for brand name. Huh? At this point, I can feel the tears beginning to burn behind my eyes. They contacted the Walgreens in Land O’ Lakes and discovered that they had 5 doses and I could get the rest later. Wonder how this is going to work out?

Arrived at the Walgreens in Land O’ Lakes but spent 20 minutes there waiting because the other Walgreens forgot to take the prescription information out of the computer so this Walgreens could not fill it until they did that. I feel for sorry for the lady in the Walgreens pharmacy because at this point, I lose it and begin to cry. “Could someone please just get this straight? Our children are at home waiting to have Christmas. All I am trying to do is get home with my husband and his medication.” Things were finally resolved and we walked out with not 5 doses but all 30 doses that we needed.

We arrived home at 4:00 p.m. and yes because of all the chaos of the previous days and not being home, I still had gifts to wrap. I finished those as quickly as I could, filled the stockings and we finally set down to have Christmas. 🙂

We were overwhelmed with blessings because so many of you, some secret and some not, poured out love on our family with gifts. It was so awesome to see my children’s eyes light up as each gift seemed to be perfect. Not only did you shower them but Travis, myself and his parents. We were truly blessed at your generosity and overwhelmed that so many of you participated in making Christmas memorable.

We finished presents and stockings and sat down to Christmas dinner (another blessing provided by a wonderful family) a little after 7:00 p.m. By the time we were finished, I helped Travis get cleaned up, gave him a pain pill and his chemo medication and got him to bed. I followed shortly as I was extremely exhausted and as everyone knows, you do not get much sleep in a hospital.

We were up and down most of the night. I tried to stay on top of making sure that he was getting a pain pill every hour just so he could rest better, knowing that would help. We, unapologetically, did not get out of bed until 11:00 a.m. today. And yes, my children were blessedly quiet playing the Wii! Almost unheard of in this house! The quiet part I mean! 🙂 We spent the day at home doing….nothing. Sitting in front of a roaring fire, visiting with family and friends and just recuperating. Knowing that tomorrow with treatment resuming, we are at it again. Travis is still in quite a bit of pain from the blood clot in his lung. It hurts just to breathe and if he has to cough, well that is pretty much excruciating to him. The percocet seems to take the edge off but does not get rid of it completely. The clots in his lung and legs will take 6 to 8 weeks for his body to break down and reabsorb them but knowing that the filter is in place gives me peace of mind that we should not have to encounter this complication again.

In the midst of the craziest Christmas day that our family has ever had, it all came down to some very special moments. The opening of presents usually start with the children and work up to the adults (yes, we open gifts one at a time. I know it is time consuming but I love seeing everyone’s faces.) but this year, it started with me. Travis’ gift to me. Apparently, while I was out shopping on Black Friday, Travis was sitting at the table having breakfast with this dad. He asked his dad if he would take him shopping, he wanted to get something for me for Christmas. So after Travis’ treatment at Moffitt that day, they went shopping. Travis picked out what he wanted to get me. He told his dad that he might not remember about the gift but his dad said that he would remind him. So, on Christmas, Chuck handed Travis a box and told him that he had bought it for me. Travis said, “I did?” It was a beautiful heart necklace with the word “Love” written on it. It was a moment that I will never forget. Not for the present itself but for what it represents that in the midst of memory loss and everything else, my husband’s love for me was evident and acted upon.

At the end of all the presents, we presented each child with their last gift. We had gotten a gift for each of the children that was unique for each them. Then we had the items engraved with a special message from their dad. These gifts are something that I had discussed with Travis and we knew would last a lifetime. It was a moment that my children will never forget.

And that is what it is about for us. Not those moments that seem to suck the very strength from your bones but the ones where you know that in the midst of everything else, love is what is important. Love is what makes the other moments more bearable. While every moment we have with each other should be filled with love, it often is not. That is something that we should be more intentional about, trying to fill as many moments as we can with love. On some level, I hate that this was the Christmas that we chose to give these special gifts to the children. I wish we had done it sooner and just because. But we have done it now and that is the important part. We did not let another moment pass by without letting them know how truly unique, special and loved they are by Travis.

Take some time this next year to find moments to fill with love for those who are close to you. Regret is hard thing to live with.

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Christmas Revised

Internal medicine came in to evaluate Travis. Yesterday Travis started having pain from the blood clot in his lung. The pain medicine did not seem to really resolve all that pain and he seemed to still be in pain. The did give him some Morphine and that has now kicked in and he is resting.

Internal medicine wanted to start him on injectible blood thinners. She said that she had consulted with Hemotology Oncology and they said that there were no countraindications to Travis being on injectible blood thinners. Yesterday, I was told by the cardiologist that they were doing IV Heparin for several reasons. One was the fact that they would draw blood every 6 hours to check clotting factors and then adjust the Heparing accordingly. Also, if any complication developed, the IV could immediately be stopped and he would be given an coagulant to counteract the process. With Injectible blood thinners, it is harder to reverse, stop or monitor. You basically have to wait for it to run through the system. The risk being that there is an increased risk of bleeding in the brain while he is on the blood thinners due to the brain cancer. I reitereted what I had been told. She repeated what she had heard from Hemotology Oncology. I asked if Dr. Pan had given approval for the injectible blood thinners, she said they had not been able to get a hold of him. Then she told me that they wanted to start the injectible blood thinners now I explained that I was not comfortable doing that until Dr. Pan had approved it and I did not them started until then.

So for now we are staying put here. (There was also talk of transfer to a different floor but they have said he can remain in this room. We do have a big private room right now.) The children are coming up later and bringing the first load of gifts and tomorrow they will bring the rest of the gifts and we will have Christmas here. A wonderful friend has already brought us a tree and the important part is that we will all be together for Christmas.

Please remember that if you plan to visit you must have had a flu shot. Travis immune system is supressed right now due to chemo and raidation. We really do not need any more complications right now. If you have not had a flu shot, please send your love and care through a message here to Travis.

Blood Clot Procedure

This morning they did a Doppler of Travis’ legs to check for blood clots. Apparently blood clots cannot start in your lungs. They begin your legs and travel upwards to lung, heart, etc. So this clot in his lung had apparently started in his leg and had broken off and traveled to his lung. The Doppler did show a residual blood clot in Travis leg.

So this morning, Travis had a minor procedure (local anesthetic only) to place a filter in the inverior vena cava. This filter would catch any blood clots that might break off in the legs and travel upward. This filter is retrivable or can stay in long term. This is the solution for now since blood thinners are not an option right now.

Not sure about discharge yet but I will let you know as soon as I hear.

Living in the Middle

A little over 2 1/2 months ago, we were here in this hospital. Different floor, different unit, different reason. Tonight as I sit on this couch listening to Travis breathing while he sleeps, I am struck by how much has changed for us in the last 77 days. There is not a single area of our lives that has not been altered or changed by these circumstances. I cannot find a single remnant left of what life looked life before October 9th. There is not a single person near us that has not been affected by these circumstantces, It has touched me, our children, our extended family, our friends, our church and complete strangers.

Before this began, I thought I had a pretty good idea of what faith was and what it looked like in my life. Now, I see that I was mistaken. This has shaken much of what I have believed about God, about my faith and about life. As I sit here, I am struck by the fact that so much of what we chose to believe has never really been tested by the fire of circumstance. That fire, for me at least, has scorched away much.

I struggle to see the point right now. What is God up to? What is He after? What does He want? But all I hear is silence. Just silence. What I have discovered about silence, especially from God, is that it is unnerving. It is very hard to trust in the middle of silence.

I know that God can heal Travis and fully restore him. My struggle is whether or not that is the plan for Travis, for me, for our children, for his parents. Many of you have sent me emails, messages, stories of people that God has healed from cancer. I am glad that was God’s plan for them but that does not necessarily equate that it is God’s plan for Travis. Before any of you send me messages espousing theology, let me just say that I know that Jesus secured healing for us by the stripes that He bore and the blood that He shed on the cross. I also know that he conquered death when he rose from the grave. I have taught those things, preached those things and on some level lived those things. But sometimes things are not as clear as we make them out to be when we interpret the Scriptures. True healing, ultimate healing really happens in heaven. Yes, it does happen here on earth as well but for only 2 reasons that I can surmise from Scriptures: to bring glory to God or for the person who has healed to accomplish a job for the advancement of the Kingdom. Death was conquered in the fact that if we accept Christ’s sacrifice, we have eternal life. Not here on earth but in heaven. Could Travis’ healing bring glory to God? Yes. Could Travis still have more to accomplish for the advancement of the Kingdom? Yes. But is that God’s plan? Silence.

What if Travis has done everything for the Kingdom that God has put him here to do? What if his reward is to get to go home before the rest of us? This world is not our home. We act like it is. We live like it is. This world is only the prelude to biggest part of life. Heaven.

So, we have struggled but not yet adjusted to living in the middle. We have tried to live each day as if it was Travis’ last. Family time has taken a different quailty and tone and is much more intentional instead of happenstance. It is hard living there. Harder than I ever thought would be possible. It makes every moment full of emotion that seems at times to tip the scales to overwhelming.

Lately, I have been thinking of Jesus’ last night in the Garden of Gethsamene. Jesus anguished over what was coming and yet he had the foreknowledge of being raised from the dead. Yet, he still anguished. How much more so can I, my children, Travis’ family and you anguish over these circumstances even though we have no knowledge of what is coming?

What was God doing while Jesus anguished? Did He anguish too even though He knew the outcome to be wonderful? The fact that God could likely be anguishing over my anguish is more comforting to me than anything else has been in the past 77 days.

Jesus knew what was to come and what the outcome was. Yet He still begged to not drink from the cup BEFORE surrendering His will to the Father’s will. I am somewhere in the middle of that. I have been begging with everything that I have for me or my children or Travis’ family to not have to drink from this cup. But I get silence…just like Jesus did. I have yet to arrive at “Not my will but yours.” I am closer than I was 77 days ago but not there. I am in the middle. I am beginning to believe that living in the middle….well, that is faith. And it is a whole lot harder than living the “faith” that I thought I had before.

Cardiology Issue Update #3

So they have discovered a blood clot in Travis’ lung which is the reason for the shortness of breath. As of now, they do not see any issues with his heart. Apparently, blood clots are something that can normally happen when you have cancer.

Normally, they would just start him on blood thinners and that would stabilize the current blood clot and keep any new ones from forming. Over time, the blood clot would dissolve and that would be the end of it. The complication in this case arises because Travis does have brain cancer, if he is started on a blood thinner there is a risk of bleeding in the brain. They are working with Dr. Pan (neuro-oncologist) and Dr. Yu (radiation oncologist) as to what the long term solution might be.

For now (short term solution), they are starting heparin by IV but they will be monitoring him very closely for bleeding. If they see any sign of problems, then will immediately stop the IV and give him an anti-coagulant to counteract the tihinner.

Tomorrow cardio will transfer him over to the general medicine service and go from there.

Radiation was cancelled for today. Radiation was not scheduled for tomorrow due to Christmas Eve so the next treatment would have been Monday. Depending on what happens here, we will resume radiation once a solution has been reached. Until radiation is resumed, chemo is on hold as well.

Cardiology Issue Update #2

After seeing the Cardiologist this morning, he was concerned enough with Travis’ symptoms to admit him to the Cardiac Unit at TGH for further work up. The reason for this was that the cardiologist was not comfortable with scheudling something after the holidays and if he had the work up in the hospital then the tests could get done quicker inpatient and the doctor would have the results immediately. They are currently cleaning a room for us.

I am not even sure what to ask to pray for at this point. Obviously, this is not what we wanted 2 days before Christmas. This Christmast means a lot to us in light of our Travis’ current situation but if push comes to shove, we will bring the gifts and the children here and have Christmas.

Thanks again for all your prayers.

Cardiology Issue Update

Thank you for your prayers. We were able to secure an appointment with one of the USF cardiologists at 9:00 am in the morning. Radiation has been moved to 3:00 pm to accommodate that appointment. Please pray for Travis’ energy level tomorrow as the fatigue has been dramatic over the last week and tomorrow will obviously be a long day.

We still need to secure a PCP that would be willing to oversee Travis right now.

Possible Cardiology Issues

Today at Travis’ appointment at Moffitt we discussed his shortness of breath worsening over the last 3 days. They gauged his O2 saturation while sitting and that seemed to be fine. But then they gauged it as he got up from the chair and walked down the hall to the door. His heart rate dropped dramatically as did his O2 saturation. They feel that Travis’ needs to get a cardiac workup pretty soon.

Due to not having health insurance for the past 2 years, Travis does not have a current primary care physician.

Urgent prayer needed:
We need to find a primary care physician and a cardiologist that:
1. Accept Medicaid Share of Cost
2. Are willing to start care of Travis in the middle of cancer treatment
3. Can see Travis this week or the beginning of next week.

Pray also that Travis’ symptoms do not worsen requiring an ER visit and that the symptoms will resolve during this holiday season.

70 Days and 22 Completed Treatments

Friday officially marked 22 completed treatments. We have 10 treatments left, after today that number is down to 9. It is hard to believe that we have come that far in this phase already but it is true.

Travis’ blood counts continue to hold steady. There also still been no nausea or vomiting. The biggest factors continue to be fatigue and short term memory loss. Both of which we were warned about. The fatigue factor is a constant but worse after radiation. After 5 days of radiation, Travis needs to just recoup on the weekend for the next 5 days of treatment upcoming. Dr. Yu (radiation oncologist) has decided to lessen the steroid dosage and see how Travis handles that. If the headaches return (due to brain swelling) or his appetite drops off (causing weight loss) then we will increase the dosage back to where it was.

There has been a marked improvement in his physical strength and balance. The physical therapist at Moffitt has scaled back his therapy to once a week now. He continue to see the occupational therapist once a week as well.

Even though balance has improved somewhat, there are still moments and days when he is extremely off balance. He did actually fall last Monday, nothing significant but the fall did stress the fact that we still need modification for certain activities.

Most of you have asked what the plan is from here. I will try and relay it as best as I remember but also know that so much happened in those early days that I may not remember correctly. All that to say, things might change.

Travis’ last radiation and chemo treatment will be on January 3rd. On the 6th, he will have an MRI and we will see Dr. Pan (neuro-oncologist). They have already warned us that that MRI will actually look worse because of all the effects of radiation but it does provide a baseline of comparison as well as the previous scans that Travis had done. Travis then has a 3 week break. As of right now, we are planning to go away as a family somewhere to just be together and away at the same time. The residual effects (fatigue mostly) of radiation and chemo will still be in effect so nothing too strenuous just time away together as a family. This is where I get a little confused, I am not sure if there is another MRI before we start phase 2 or if the MRI is after 2 months on phase 2. (I will be clarifying that with the Dr. Pan on the 6th) After the 3 week break, phase 2 begins. Right now, Travis chemo pill is 140 mg. In phase 2, that dosage is tripled to 420 mg (which is actually a combination a pills to get close to 420 mg). He takes 420 mg for 5 consecutive days every 28 days. We have a pretty realistic picture of what that may look like as far as side effects based on other brain tumor patients and their caretakers that we have talked to. After 2 months, we get another MRI. If that MRI shows no growth then we continue that phase for a minimum of 6 months, getting MRI scans every 2 months. If at any point an MRI shows that that tumor is still growing and progressing, then we have some decisions to pray about and make.

I have not put anything out on statistics and odds on what we are up against. Partly because we had not told the children that information, which we did a few weeks ago. Another reason is denial on my part. If I do not say it then it does not apply. I know that is a little crazy but it is where I was. With the help of some very great counsel, God showed me the following regarding truth. Truth is not just the good part that we espouse and believe. Truth can also be what we are up against. Just because I do not talk about the mountain does not mean it is not there. The truth is that it is still there. In the Bible, most of the times the Israelities were very keenly aware of how many numbers the other army had and the size and force of their weapons. He did not withhold this information from them. In the New Testament, many times we are given background on people’s sickness and how long they had it and to what extent the illness had stolen their lives. All of this information was not only given to the disciples or the crowd but to us and the information came BEFORE Jesus healed them. If we say as Christians that there is freedom in truth, then we must acknowlege all truth, not just the parts that we want to acknowledge. How else did the Israelities or the people who were healed truly know what they were being delivered from unless they were truly aware of their situation? Acknowledging the truth of the mountain, will not only free us in ways that we cannot begin to imagine. Knowing the truth of this mountain for our family has in effect disabled the enemy from wreaking havoc with fear. We already know the worst, it can only go up from there if that is God’s will.

Many of our family and some friends have done their research on this and are aware of the size of the mountain. I am sharing these things with you because I believe that God will show you ways to pray that you maybe have not encountered before and it may not be the way that you think.

I know that I have said on more than one occasion that our situation is serious. Barring a miracle from God, the outlook is not favorable. Patients that have Travis’ type of tumor (remember it is tumor variation, which makes is more difficult), only 50% of them respond to treatment. Knowing what kind of mental status or ability Travis recovers if he does respond is hard to tell based on location and other things. We have to wait and see. Of the 50% that respond, only 50% of those patient survive one year. The number drops to 25% by year 2 and there are no survival numbers beyond that. (Keep in mind that this is not only based on tumor but on the area of location, which is a big factor in Travis’ case. The location of the brain where his tumor is called the thalamus. It controls all of your body functions that you do not have to think about, like heart rate, breathing, senses, etc.) If the treatment is effective and tumor growth is stopped. Most tumors began to grow again within 6-12 months and then we start making decisions again. If this treatment is not effective, there are no more standards of treatment, we would immediately begin looking at research trials and so forth and would have to make decisions on what God would want us to do.

Our children are aware of all this information. By allowing the children to see the truth, I was trusting God to begin to show up in their lives in ways that He had never done before. He has begun to do that. Do they struggle? Absolutely, but I also see God shaping them in ways that I never thought was possible. As painful as it is for me to watch my children walk this road, I know that the shaping that God is doing is essential to what He is going to call them to do one day for His Kingdom.

Please allow God and the Holy Spirit to use truth, favorable or unfavorable, to direct your prayers for our family. Sometimes you may find yourself praying things that you never thought you would. I know that I have.

God’s Answers to Prayers

One of our most powerful and mighty weapons is prayer. It is often the most overlooked weapon as well. There are many reason for that I am sure. I will not discuss those reasons here. The focus will be how God answers prayer. One of the most amazing things to me is how God answers our prayers, mostly not always the way that we think He should. It is also one of the frustrating things to me about God as well.

I know that you have been lifting up prayers constantly for Travis and our family. Regardless of the words you have used and what you have asked for on our behalf, I want to share how God has been answering those prayers. Sometimes the answers that God gives to our prayers actually teach us how to pray better and along with His will.

Most of you are aware of the memory deficit that has occurred for Travis. His short term memory has been limited to the 15-20 minute time range. In the last few weeks, some of his long term memories are being affected as well. He has the memories, they just get mixed up in his head. The ways that he used to access those memories before have been impaired. He also sometimes substitute memories of things that have never happened but have similar characteristics to other memories. Last week, someone asked Travis how his faith and relationship with God has been in all of this. Travis responded by saying that when he wakes up every day, he is not sure how he got here. He knows he has a brain tumor but he does not know anything else. Then he knows that God is there. He is not sure how he knows that but he just does. Knowing that God is there has given him peace that even though he does not know what happened or what the result will be, it is enough that God is there.

In the midst of memory deficit, this is how God has answered prayer.

I am obviously not a man and can only speculate about much of this next subject. I do have some sense from being married, how deeply ingrained into a man is the nature of providing for his family and taking care of them. It is part of how they define themselves as men. I have asked Travis on many occasions, as have others who are close to us, if there is anything that Travis is worried about for me and the children. In light of him not working or what the future might hold, I have not wanted him to worry about how we are going to be provided for. I have shared with Travis how many of you have shared your financial resources with us in terms of money, gift cards, food, etc, but with the memory loss these things are lost quickly. Travis’ response to the question about provision for his family was that he was not worried. He could not imagine anything that would come up for me or the children that our friends would not take care of. Again, there was an overwhelming sense of peace in him about this.

In the midst of financial uncertainty, this is how God has answered prayer.

As I have shared before, emotions come to me in waves in the midst of these circumstances. Usually, I am not bothered by winter and I love the holidays. This year has obviously been different. There just seems to be an overcast to everything. I have even been thinking the last week or so how winter seems to reflect the environment in my heart right now. Everything is brown, desolate, and cold. No life can be seen. You are pretty sure that spring is never going to come. Last evening, someone left a white poinsettia by our front door. Normally, I like red poinsettias but God sent a white one for a reason. On the note was written, “A poinsettia is that reminder of life in a season of browns of outside.” God carried that further for me by reminding me that white represents purity and hope. This poinsettia reminds me that even in the middle of winter there is the promise of hope. As if that was not enough, today I was given another poinsettia. One I have never seen before. The leaves are red on the outside and white in the middle. I felt like God combined what I loved (the red poinsettia) with the promise of hope (white poinsettia) to remind me that it is just for me.

In the midst of winter on the earth and in my heart, this is how God has answered prayer.

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