Friday, February 26, 2010

Been thinking a lot about friends lately...
and how much a part of my life they are. So many of you have walked through different parts of my life journey with me. Some of you from the time I was just a little girl. Some of you have been there my whole life. Others of you are treasures that have grown more valuable over the test of time, distance, and experience. Some of you have shared your heart with me and given me the gift of your priceless friendship. Some of you are new friends who have brought so much meaning and purpose into my life recently. For all of you, and the part you have played in my life I am thankful.

Some songs that I have been listening to lately have reminded me of some specific friendships and memories with some special people. And since I am sitting here in this quiet hospital room with nothing else to do you all get the pleasure of listening to them too!!!

These first two songs remind me of my group of friends from my trip to Guatemala. We often sang these songs...especially at the end of our time. And I am so thankful that some of these friends are still my friends today, especially my best friend Gretchen!! I can't believe so many years have passed.

This song is for all of you who have walked through the tough times with me.

This one is for my Tennessee girls...brings back so many memories of the good "old" days.

And for those of you who have spoken truth over my life, showering me with prayer and love.

This one is for my sister Reagan...remember this????

Thursday, February 25, 2010

I feel like I have been in an intense battle all day. Thank you all for your prayers throughout the day. It is amazing the difference having prayer warriors makes. We started the morning with an MRI that showed no tumor growth or changes in the brain. Ruled out any other physical reasons for why we have had such sudden behavior changes.

The Lord brought such comfort this morning through my oncology team. I love them so much. To see the concern, the compassion, and the frustration that they have towards this situation encourages me to know we are not alone. Each of them love Jonathan so much and are doing the best that they can. Even the social worker was brought to tears. We just can't stand to see what happens to our precious Jonathan. Trust me when I say that it is horrible.

Dr. Foreman was able to capture the situation well and give words to what I feel. What we are dealing with is hypothalamic rage. It stems from the hypothalamus being severely damaged. He literally doesn't have a way to use the coping skill needed to calm down and not overreact. Dr. Foreman said that you want another part of the brain to be broken...but not the hypothalamus. All the behavior control is centered there. He said there is nothing harder to deal with and more heartbreaking than a hypothalamic rage because you literally can not reason with the child. There is no talking down. There is no changing the mind. It just has to run its course. This was hard to hear, even though I have been saying it forever, because its just one more thing that we can't do anything about. My mommy heart wants to, needs to be able to fix it. I need to be able to take the pain away. I need to protect my other kids from the horrifying experience. And I can't. It is not fair.

Shortly after oncology came, the psychiatrist came in. There is something that just is not setting right with me regarding this doctor. We have had several encounters in the past where he is contradicting himself, forgetting what he said previously, and where he tells me to do something but then acts like I did something without his permission. And he always messes with Jon's meds. That is a very thin line to be walking on. He is very conservative... I think he has some situations go wrong and it has caused him to not be aggressive in treating with medication. I understand the fears and concerns. But I on the other side of this situation am living with the consequences of his fear and lack of intervention. I can tell you that the lack of help is as debilitating and dangerous as any side effect the medicine will have. So while I appreciate his effort, I don't really care for his method. But he is all I have.

He wanted to try a medicine named phenobarbital, an old seizure med that causes sedation. At first it appeared that this med could be used as a rescue medicine. I was ok with a sedating rescue drug. Later when the inpatient oncology docs were telling me the plan, the plan had changed. This was not a prn rescue med. It was an every day medicine. I was not ok with that. I don't need more every day medicines. Especially not everyday meds that are going to make him even more tired and irritated than he already is. What I need is an emergency plan. To top it of, the docs informed that they were going to take him off the Prozac. So not ok with me. It honestly seems that every time we are in the hospital the psychiatrist takes advantage of the opportunity to take him off a medicine. When they told me that, all of sudden I was done agreeing with them and I told them so.

I told them my feelings about the way the psychiatrist is handling the situation. I told them that the only way I would even be willing to use the phenobarb was if they gave him the first dose here and kept him for observation. They were getting ready to discharge us with the instruction to try this med for 10 days and then follow up. So my refusal to leave without observation bought us more time. And I told them we were not changing the prozac. Prozac combined with zyprexa makes a medicine called symbyax. This medicine is the one med that brought Jon stability after two years of psychosis. No way are we touching this medicine.

The more I thought about, prayed about, and researched the medicine the more I didn't have any peace about. So I finally was able to explain to the nurse in a way that finally made sense exactly why we were here. Of course I have been saying the same thing all day and no one seemed to be getting it. We were going to have a conference of all the doctors but most of them had already left. So instead the attending came in and listened (finally) and came up with a reasonable plan. We are not doing the phenobarbital. And in the morning we will be discussing an emergency plan that is reasonable and effective and agreed on by all involved.

I am not sure if the psychiatrist is going to agree. I am not sure he is even going to want to be involved after tomorrow. But I am praying he will be open to listening and willing to take a risk. All I know is that I am leaving only when I have one thing....a plan that includes emergency medicine that works fast...not something that might work in an hour or two. But immediate.

Its ridiculous though that this has to be so hard. Because he has had seizures in the past, they have given me emergency anti-seizure meds that work within minutes. Because he is adrenal insufficient, I have injectable cortef for an emergency. Why can't they give me some tools that will treat the raging crisis within minutes. It doesn't make sense.

So tomorrow may be a fight. Might not be. We need your prayers. I am so thankful for your continued prayers and love.

Until tomorrow....
You know the situation is not good when you feel as though death would be better than what life is. Sorry, friends, just being honest. The sentence this disease has placed upon my sweet Jonathan is so incredibly cruel. There is no end in sight. No treatment. Nothing to make it better. And to always fall through the cracks because you are an "out of the box" kind of kid in a world that doesn't make accommodations for "out of the box thinking".

It would be less cruel to have no treatment options and yet, have the hope that you will be free from the pain and sickness and be with Jesus. This hypothalamic rage (the term for what is happening because his hypothalamus is broken.) is more devastating and ravaging of quality of life than so many other things. And we can't fix it. You just can't have a hypothalamus transplant. Believe me if you could, I would be the first in line to give him mine!

I am trying to prepare right now to be the advocate for my child. Somehow I need to respectfully ask the doctors to look outside the box. Good thing I have been taking the Love and Respect class...hopefully by now I have figured out, at least in a small way, how to speak in the "male" language. I need the psychiatrist on my side. There is no other psychiatrist to turn to. And yet, I sense he is afraid to be aggressive and do what is needed to help Jonathan. Please pray for the Lord to give me gentle words that will make sense to him. Pray that he can let go of the things holding him back from acting in Jon's best interest.

Please pray for me to know when to fight and when not to. When to accept what they say and when to challenge them. Pray for me to be bold and to be able to act upon that gut feeling the Lord gives.

Wednesday, February 24, 2010

Its been a while since I have written. My silence in part has been due to just waiting. Seems a little odd to be telling the world about a great miracle and following that by sharing the reality of life in the shadow of that miracle. The miracle of a shrinking tumor...truly a miracle. But honestly not quite the miracle it was perceived to be. For some, it was the reigniting of the hope that perhaps this boy who we all love so deeply might be spared from the ravishing of this disease. Even for me, that hope lives on. I believe My God is able to completely heal this precious boy. I know without a doubt that he can. I also know that he may choose not to. And in that I feel spurred on to a deeper hope. One that is accompanied by a peace that passes understanding. A hope in eternity. A hope that holds me steadfast to my Savior by the declaration that says, " Though He may slay me, yet, will I trust him." (Job 13:15)

The real miracle to me the day the doctor handed me the scans and said "I have no explanation" was not that the tumor was shrinking but that the God of the universe would be so merciful to us and would grant us such tender love. He didn't ask me to withhold treatment. He didn't make me have to live in that moment knowing that I might be withholding something that would prolong his life. The Lord simply had asked me to give him back HIS child. He told me to trust Him. And to leave the outcome in his hands. And he surprised me.

The reality, though, is that Jonathan's condition is not really based on what the tumor does or doesn't do. The reality is that his brain has been severely damaged. It doesn't function right. Living with the reality of a broken brain is actually quite tough. For everyone.

Things are changing. The past couple of weeks have taken their toll. Raging has become a daily if not many times a day event. Jon just can't cope with life. Medication is not working anymore. Everything feels turned upside down. And everything and everyone is stretched to a breaking point.

Maybe he is just sick and its throwing him off. Maybe he just needs some good antibiotics and he will calm back down. But maybe this is becoming a new normal. Maybe this is a sign that something else is wrong. I don't know.

What I do know is that whatever it is, it has caused us to once again look into the unknown and prepare for what could be coming. For me, it is the knowledge that I can not control what is happening. Knowing that once I make that phone call for help, I am no longer in control. Knowing that in the near future I may be faced with letting go of Jon so he can get help kills me. Its not normal. Its not ok. But it is how it is. And I know that God is in control.

Monday, February 22, 2010

1 Samuel 30:6 tells us how David was greatly distressed but he strengthened himself in the Lord. These past couple of weeks have carried circumstances that have brought me to a point of being greatly distressed. For a short while I had forgotten how to strengthen myself in the Lord. So I found myself wallowing in the pain and lost my focus on the Lord. I am quickly learning there is no way to survive crisis upon crisis without being built up and strengthened in the Lord. So tonight the Lord is showing me so many things. Speaking to my heart, singing his gracious love over me, and wrapping me in his arms that are more than able to carry me through whatever threatening to destroy me.

Here is another little nugget that ministered to me tonight from Max Lucado's book...

" For some of you, the journey has been long. Very long and stormy. Some of you have shouldered burdens that few of us could ever carry. And you are tired. Its hard for you to see the city in the midst of the storms.The desire to pull over to the side of the road and get out entices you. You want to go on, but some days the road seems so long. God never said that the journey would be easy, but he did say that the arrival would be worthwhile. Remember this: God may not do what you want, but he will do what is right...and best. He's the Father of forward motion. Trust him. He will get you home. And the trials of the trip will be lost in the joys of the feast. Let us run with endurance the race that is set before us, looking unto Jesus, the author and finisher of our faith. Hebrews 12:1-2

Sunday, February 21, 2010

I am reading a short little book with a collection of paragraphs from Max Lucado's books. It is like a flood water of encouragement for my thirsty soul. I wanted to share this one particular thought that really ministered to my heart.

"God views your life the way you view a movie after you have read the book. When something bad happens, you feel the air sucked out of the theater. Everyone else gasps at the crisis on the screen. Not you. Why? You've read the book. You know how the good guy gets out of the tight spot. God views your life with the same confidence. He's not only read your story... he wrote it. His perspective is different and his purpose is clear. " Max Lucado Come Thirsty