MRI Results

We went yesterday for an MRI to check on the status of the tumor. The day went much more smoothly than the last time. The nurses remembered us and the radiologist who spoke with us this time didn't know his history, but was so much more open and compassionate and interested and didn't make us feel like numbers in a system. Also, we fed Theo his breakfast and gave him all his medicines so he wouldn't be hungry and miserable. When we first got there they asked when he had last eaten (which was just a couple hours before) and almost made us wait four more hours, but Jamie talked to the doctor and explained that Theo gets chloral hydrate at bedtime every night, usually right after his last feeding, and then they didn't have a problem going ahead. We didn't have to wait at all and the whole thing went really smoothly. We went to the hematolgy/oncology department after that for our appointment with them to review the scan. All our oncologists were there and also Dr. Ty, the neurosurgeon who works with Dr. Ward and who put Theo's shunt in. We hadn't seen Dr. Ty since before we were originally discharged in September. He reviewed the scan with us. The tumor has grown considerably and is now the same size it was when it was originally diagnosed in August--6x6 centimeters. It's very different though now because the tumor is surrounded by very large pockets of fluid. At the last scan, there were a few small pockets of fluid near the tumor growth, but now it's a large mass of tumor surrounded by a big pocket of fluid. The midline of the brain has shifted over and basically the whole right side of his brain is now taken up with the tumor and the fluid. Because of the atrophy of brain tissue--there is basically no healthy or normal brain tissue--the tumor and fluid have been able to expand considerably. In other words, if his brain tissue was normal, the tumor would have already killed him at this point. As the tumor continues to grow, it will eventually begin to press on the brain stem which will depress his breathing and most likely he will go to sleep and not wake up. He may also have a seizure which could result in death. The doctors raised his phenobarbitol dosage yesterday to hopefully counteract any seizure activity that may occur. We think he had a seizure on Wednesday. He just kind of "froze"--stopped moving, breathing, eyes staring off--for about 15 seconds. When Jamie nudged him, he snapped out of it. Shortly after that, his eyelids and eyes began twitching for a few seconds. He hasn't had any more episodes like that, but we raised the phenobarb anyway and if he looks as if he is having any seizure activity we will give him a dose right away and some ativan which is also prescribed frequently for seizure in addition to relief of agitation. They said that he doesn't have a pain perception like me or you and probably doesn't experience pain at all. But when I told them about how he gets really mad when I open his hands or how he cried when I accidentlally nipped his finger cutting his nails the other day or how he clearly knows the difference between me and other people (he is much calmer and content with me and he knows when Jamie holds him too), they were really surprised. So he is still "there" on some level. But, the tumor continues to grow. At this point, nobody knows how long Theo may still be with us. He could go anytime or it could be a month or two. Not more than that.

Even though we knew what the image would show, it was hard to see it and hear it. It's like it just takes us one step closer. I know he is going to die, I will just miss him so much and I just wish that none of this had ever happened to us. Which is pointless, but I can't help it. It's isn't that I can't accept it, it's just hard. I don't want to have to accept it. I feel very peaceful about Theo and this whole situation on many different levels--it's just on other, selfish, mother levels, I just want my baby back and I don't want him to die. Even though I know that is what is happening.

I had an experience in the hospital with Theo back in September, just after we found out about the damage to his brain. At that time, about a week before we were discharged, they found an infection in his blood. They were waiting to get the test results from cerebral spinal fluid to determine whether the infection was in the shunt or not. If not, it could be simply treated with antibiotics, but it if it was a shunt infection, the treatment would involve more brain surgery. One procedure to remove the shunt, and then another to replace it, putting a new one in the opposite ventricle (which had already undergone the insult of the intial tumor resection). We discussed it and decided that if the infection was in the shunt we would choose to forgo the treatment in order to avoid more surgeries to his little brain. After we knew that his brain was so damaged and his quality of life in the future would be so compromised, avoiding any more pain for him was our whole goal. That was our reasoning behind the decision to discontinue the chemo and any further brain surgery. But to not treat the shunt infection would be to determine that he would die within the month. Without treatment, the infection would grow to a case of ventriculitis resulting in death in a matter of weeks. Jamie had gone home for the night and it was late. I sat next to the bed with my head on the mattress near Theo's head. I felt that we had made the right decision, it seemed right to me, but I still had some doubt and fear. I was talking to Theo and saying that I hope we were doing the right things for him but I just didn't know. And in a moment of quiet, I felt and heard a little voice in my head and I knew clearly that it wasn't my own voice. He said "It's ok Mommy, I am ok. I have done what I came to do and whatever you decide is ok with me. I am ready to go", and I felt this great wave of love and peace wash over me and I knew that he would be fine and that we had unquestioningly made the right decisions. I also knew then for certain that I had agreed, before either of us were born into this life, to bring him into the world at this time and to be with him through this because this was what he needed to do. This is his path and I agreed to walk it with him. As much as it hurts now--I have asked both him and God, "Why?" so many times--Why couldn't he have grown up, lived a life--he could have done great things, been such an incredible person, a teacher, a leader--I know that I did make an agreement with him and that all of the pain and hurt that I am experiencing now stems from my own needs and desires and my attachments to him. None of which I am condemning, it's normal--I can't get around having those feelings, he is my child after all. But I also know that he is already a great teacher and he has already touched so many people's lives--more than many of us do in a whole long lifetime. I know that he and his life will continue to touch people even after he is gone. I think that is also part of my agreement with him. I know that all he required in this life was the time he spent in the womb, this short time in this physical body and then he is going on to something else.
Not necessarily something better--just something else.
I can't stand when poeple say "he is in a better place" of people who have died, to me or to any parent who has lost a child. To us, there is no better place than here in our arms. But I also know that I will see him again. None of that makes this easy. I am grateful that I am able to keep an open heart, that I don't want to hold him here at all costs, that I want him to go on to his next big thing. Because of that, this process has held many beautiful moments for all of us and has been easier than it may have been otherwise. But I would trade every good thing that this experience has brought and will bring in our future, to just have him here. To be a regular mom who yells at her kid for stupid stuff, who makes mistakes along the way, who gets mad over little things, who feels bad that maybe I didn't do it right (whatever it is), who has to deal with normal kid stuff, who gets to see him grow and play and get into trouble and learn from his mistakes, and fall in love, and graduate and get a job--and all those millions of things that people see their kids do. But I have also been really lucky to have had the time we have with him. Lucky to have known him and to share my life with him even for a little while.
Anyway, I really just wanted to share that--only a few people know this story and with the news of the MRI yesterday, I hope that in sharing it, it can help others to know one more special, beautiful thing about our baby Theo.

Love,
Karla