It's getting harder to maintain a positive outlook on things. Another little boy with Medulloblastoma has lost his battle. I don't know the details, but his name is Lucas West and he was being treated at a hospital in the Chicago area. There was a post to his CarePage on Christmas Eve saying that he had limited time left. Then messages of condolences started showing up on his message board. It seems that most of the children we are tracking through CarePages are not doing well.
I know in my mind that what is happening to these other children with Medulloblastoma will not necessarily happen to Elias, but I am still sad for these children and their families and scared for Elias's future.
I see some troubling signs in Elias lately. He seems to be more unsteady on his feet. A few times when he has been speaking, his voice has gotten flat and monotone. He has been holding his head down more. When I see these things, I think that the tumor might be back. From what I have read about other children with Medullo, it could be something else - like swelling in the brain as a result of radiation. I need to wait and hear the results of the MRI he had on Friday, but I can't help being worried while I wait.
I went to Chris on Thursday night to tell him about my fears. It was something I didn't even want to speak out loud, but after retreating to the garage to cry, I felt I needed to share it. When I told Chris, he said he had noticed the signs as well and it had been troubling him. The two of us began an emotionally draining dialogue about our fears and concerns.
Chris confided he is afraid that this was our last Christmas with Elias. I admitted the thought had crossed my mind that I might be left with three children, instead of four. Chris mirrored my thoughts when he said he has not given up hope for Elias, he is just preparing for what could happen. Chris went on to tell me that he feels he has to do some grieving now, because if Elias were not to make it, the grief would leave him incapacitated if he had not already done some grieving.
Chris went on to say that he feels very blessed to have had Elias for as long as we have. He also feels that we are lucky to have the chance to say goodbye to Elias, if that day comes. We have friends that have lost children in a sudden and unexpected way, who never had the chance to say goodbye.
Sunday, December 30, 2007
Monday, December 24, 2007
We Have September 13th
Yesterday, as we were driving around together, I said to Chris, "The rest of America has September 11th. We have September 13th."
That's the day I took Elias to his pediatrician and subsequently found out he had a brain tumor. That was the day that began a major change in course for our lives. We are now the parents of a cancer patient. My son has cancer. He is being treated for cancer. Now we live in the world of hospitals, doctors, tests, medical needs, etc.
If you are the parent of a healthy child or children, like I was, you are probably not even aware of this "world". Even if you know about it peripherally, you don't really know.
My nephew, Will, was born with Spina Bifida and spent a good deal of his time as an infant in the hospital. He had several surgeries. He has special medical needs that continue even now that he is 4 years old. While I have never lived in the same city as Will's family, I have visited them often. My sister, Diane (Will's mom), always kept me informed of what was going on with Will.
Even though I knew about Will, I didn't really know about his world, my sister's world. When I, through my son, became a part of this world, Diane called it "a new normal". She was right. You just learn to cope; learn to accept that you are going to be seeing doctors quite frequently, that you are going to be pushing medicines through a line coming out of your son's chest, that you are going to be changing bandages, that you are going to be going to therapy, that your son will not be going back to school this year.
But, you know what? I don't want this to be NORMAL. I want this to be TEMPORARY. Whenever I am at the Cancer Clinic, and I see patients and their parents who seem to know the staff and other patients, I don't envy them and I don't want to be in their place. I don't want this to be our life. I want to get Elias cured and return to the life we were living before. I want to be able to forget about MRI's and lumbar punctures and central lines. I want this all to be something we look back on, not something we have to deal with every day.
For now, I deal with it every day. For now, I don't have the luxury of forgetting. Maybe some day....
That's the day I took Elias to his pediatrician and subsequently found out he had a brain tumor. That was the day that began a major change in course for our lives. We are now the parents of a cancer patient. My son has cancer. He is being treated for cancer. Now we live in the world of hospitals, doctors, tests, medical needs, etc.
If you are the parent of a healthy child or children, like I was, you are probably not even aware of this "world". Even if you know about it peripherally, you don't really know.
My nephew, Will, was born with Spina Bifida and spent a good deal of his time as an infant in the hospital. He had several surgeries. He has special medical needs that continue even now that he is 4 years old. While I have never lived in the same city as Will's family, I have visited them often. My sister, Diane (Will's mom), always kept me informed of what was going on with Will.
Even though I knew about Will, I didn't really know about his world, my sister's world. When I, through my son, became a part of this world, Diane called it "a new normal". She was right. You just learn to cope; learn to accept that you are going to be seeing doctors quite frequently, that you are going to be pushing medicines through a line coming out of your son's chest, that you are going to be changing bandages, that you are going to be going to therapy, that your son will not be going back to school this year.
But, you know what? I don't want this to be NORMAL. I want this to be TEMPORARY. Whenever I am at the Cancer Clinic, and I see patients and their parents who seem to know the staff and other patients, I don't envy them and I don't want to be in their place. I don't want this to be our life. I want to get Elias cured and return to the life we were living before. I want to be able to forget about MRI's and lumbar punctures and central lines. I want this all to be something we look back on, not something we have to deal with every day.
For now, I deal with it every day. For now, I don't have the luxury of forgetting. Maybe some day....
Monday, December 10, 2007
Sad Today
Today I am sad. This morning I allowed myself to cry. Over the last few days I have heard about 3 different children battling cancer who have received bad news. All three have been told that their cancer is no longer curable. Two of the children are boys who were diagnosed with the same brain tumor as Elias - medulloblastoma. The other child is a girl who has leukemia.
My heart aches for these children and their families. My heart aches thinking that this could be a possibility in my future. I want to believe that Elias will be cured 100%. I go back over all the information we were given after his diagnosis. I read that he has an average risk tumor. I read that chances are better than 50% that he will be cured.
Before today I believed without question that Elias would be cured. Now I know about these three children. Now I also know about another boy with medulloblastoma who was thought to be cancer free for 6 months before another and different type of brain tumor was found. I search for information on kids who have beat medulloblastoma - all I find are kids still in the hospital or undergoing treatment. I need to see a success story!
I believe that Elias is incredibly strong. I reflect on how quickly he has "come back" physically since his surgery, which left him unable to speak or move much. I think about how well he has done throughout his radiation treatments and how the medical staff seemed so excited that he was not getting sick and not requiring any additional medications.
I believe in the power of prayer and know that there are many people who are praying for Elias. I know God has the power to heal. I hope that He will choose the path of healing for Elias.
My heart aches for these children and their families. My heart aches thinking that this could be a possibility in my future. I want to believe that Elias will be cured 100%. I go back over all the information we were given after his diagnosis. I read that he has an average risk tumor. I read that chances are better than 50% that he will be cured.
Before today I believed without question that Elias would be cured. Now I know about these three children. Now I also know about another boy with medulloblastoma who was thought to be cancer free for 6 months before another and different type of brain tumor was found. I search for information on kids who have beat medulloblastoma - all I find are kids still in the hospital or undergoing treatment. I need to see a success story!
I believe that Elias is incredibly strong. I reflect on how quickly he has "come back" physically since his surgery, which left him unable to speak or move much. I think about how well he has done throughout his radiation treatments and how the medical staff seemed so excited that he was not getting sick and not requiring any additional medications.
I believe in the power of prayer and know that there are many people who are praying for Elias. I know God has the power to heal. I hope that He will choose the path of healing for Elias.
Saturday, December 8, 2007
A Place of My Own
I decided to start "Leanne's Place" as a way to express my thoughts and feelings. I want to feel comfortable using this place to say the things that run through my mind - things maybe I don't even want to say out loud.
I don't feel free to speak my mind on Elias's CarePage (http://www.carepages.com/, eliasgomez). That's his page. Even though I write it, I try to keep it all about him and what he is going through and feeling.
I have a family blog (http://www.gomezikan.blogspot.com/), but I want to keep it focused on the family. I want it to continue to be a fun place to post photos and chronicle some of our family's more memorable moments.
It occured to me that people who know me might want to know how I am feeling and how I am doing and I don't often get the opportunity to really tell them. So, I created "Leanne's Place". I hope I can come here often to jot down my thoughts and feelings.
I don't feel free to speak my mind on Elias's CarePage (http://www.carepages.com/, eliasgomez). That's his page. Even though I write it, I try to keep it all about him and what he is going through and feeling.
I have a family blog (http://www.gomezikan.blogspot.com/), but I want to keep it focused on the family. I want it to continue to be a fun place to post photos and chronicle some of our family's more memorable moments.
It occured to me that people who know me might want to know how I am feeling and how I am doing and I don't often get the opportunity to really tell them. So, I created "Leanne's Place". I hope I can come here often to jot down my thoughts and feelings.
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