The surgeon called today and said that the pathologist changed his mind about what type of tumor this was in Erik's head. Originally he thought it was a ganglioglioma. Now he thinks it is a pleomorphic xanthoastrocytoma. Basically, though, the treatment and prognosis is the same. Surgery is likely all that is needed, however the surgeon is consulting with an oncologist to be sure. And he's sending it to another pathologist for a second opinion. The doctor said it is even more rare than the ganglioglioma--both have a very rare chance of coming back
Erik is back to his old self, harassing all his siblings to no end. His scar is healing nicely and he isn't in any pain that Tylenol or Motrin doesn't touch. I find that odd, but I guess that's the case with brain surgery in the area he had it in.
Again, I can't thank everyone enough for the prayers and concern on our behalf.
Saturday, June 18, 2011
Thursday, June 16, 2011
Wednesday, June 15, 2011
Success
Tuesday, June 14, 2011
MRI
We had the MRI done of Erik's spine this afternoon. He needed another IV for that, and then they had to draw blood for the labs. He was kind of upset about that, since they had drawn blood on Sunday. I told him he'd be a pin cushion by the time this was all done. He asked if there would just be one more poke tomorrow. I said, yes...apart from the hole that they need to make in your head. "Oh, yeah...", he says.
Anyway, on the way home from the hospital, the neurologist called and said everything looked good on his spine, so they are going to go ahead with the surgery tomorrow. We arrive at the hospital at 11:45 am. He'll be in the ICU for one night, then on a regular ward for 2 more.
I can't tell everyone how grateful I am for all the prayers and positive thoughts and kind words of support. Love to you all!!!
Anyway, on the way home from the hospital, the neurologist called and said everything looked good on his spine, so they are going to go ahead with the surgery tomorrow. We arrive at the hospital at 11:45 am. He'll be in the ICU for one night, then on a regular ward for 2 more.
I can't tell everyone how grateful I am for all the prayers and positive thoughts and kind words of support. Love to you all!!!
Monday, June 13, 2011
What a weekend!
It amazes me how much can happen in such a short period of time. This past weekend, Ben took the 4 boys to Washington state to see his niece graduate from high school. Maren had a dance recital and rehearsals so I stayed home with her. Ben was to leave WA on Saturday morning, and try to make it to the recital by 7 pm. I got a phone call at about 3:00 pm from Ben saying that Erik had just had a seizure in the car. They were about a half hour outside Boise when it happened. They called an ambulance and by the time they got there, he was coherent. Vitals and blood sugars were normal, so they went on their cautious way.
When they arrived home, Ben talked to a neurologist who said he should probably have a CT scan, so I took over getting kids ready for bed and Ben went to the hospital with Erik. At about 9:30 pm Ben called asking if I could find a babysitter and come to the hospital. He said that they had found a tumor on the back of Erik's brain and were wanting to do an MRI because the CT scan was kind of shadowy. I left Maren in charge and drove to the hospital, shocked that only 5 hours earlier he was perfectly healthy, and now we were looking at a brain tumor.
When I got to the hospital we had to wait for the MRI tech to come in, since she had gone home for the evening. She let us into the control room where we saw the pictures coming up as they were taken. A bright spot on the back of the right side of his brain. The ER doctor said that it could be anything from infection to a tumor. The radiologists at the hospital had gone home, so they sent the pictures to IMC in Salt Lake City, where they said that a pediatric radiologist and neurologist should look at them. The ER doctor phoned the resident neurosurgeon at Primary Children's Hospital and asked if she could look at them. She asked us to come meet with her Sunday morning at 8 am. They released us from the hospital and gave a prescription for anti-seizure medication.
While we were waiting for the MRI, my sister had called and asked if she could go sit with my kids, so she was at my house when we got back from the hospital. Ben slept with Erik that night, scared to leave him alone in case he seized again, but all was fine. Neither of us slept very well.
In the morning, the neurosurgeon showed us the pictures and told us what each scan looked like and why, and said it most likely is a tumor. Her attending arrived a short time later and talked to us about possibilities. He said there was about 10% chance it was an infection, and most likely was a tumor, but he wanted the neuro-radiologist to look at the pictures first before making a decision. The radiologist didn't come in until this morning, though. So, it was back home for more waiting.
This morning we phoned and the surgeon said the radiologist also believes it to be a tumor, but the surgeon wants to take an MRI of his spine just to be sure it is not an infection. If a lesion showed up on his spine, it would be a stronger chance that it is an infection in his brain, in which case surgery wouldn't be necessary. So, he wanted to get this MRI done before doing anything else.
So, now we have the spinal MRI scheduled for tomorrow afternoon and the surgery scheduled for Wednesday afternoon.
This type of tumor in children is very low-grade, they've said. Even if it is cancerous, they usually don't need further treatment outside of surgery. So that means most likely there will be no radiation or chemotherapy. We have no idea what caused it, or where it came from. Less than 48 hours ago we didn't even know it existed. The surgery will be about 3 hours...I told Erik to add about 30 minutes to that because he's so hard-headed the surgeon may have problems getting inside. The first night he'll be in the ICU and after that he'll spend 2 days on the medical floor before coming home.
Erik seems to be in good spirits. In fact, as I type this he is making his presence known by annoying every single one of his siblings. He's in quite the goofy mood today, as if nothing is wrong. Ben and I are starting to not be so emotional, but for a couple days we were a bit of a mess.
Today I am a little bummed out about having to miss the Ragnar race on Friday and Saturday, but I suppose I can do it another year. It's disappointing to put a years' worth of training into it and not be able to do it. I hope my team does really well, though, and I'm sorry to be able to be with them this weekend. I was really looking forward to it.
I appreciate all the prayers, thoughts, and offers for help. It is overwhelming at times to think of the amount of love and support we have from all our friends and family. We love you all so much! I'll try to update again when I can.
When they arrived home, Ben talked to a neurologist who said he should probably have a CT scan, so I took over getting kids ready for bed and Ben went to the hospital with Erik. At about 9:30 pm Ben called asking if I could find a babysitter and come to the hospital. He said that they had found a tumor on the back of Erik's brain and were wanting to do an MRI because the CT scan was kind of shadowy. I left Maren in charge and drove to the hospital, shocked that only 5 hours earlier he was perfectly healthy, and now we were looking at a brain tumor.
When I got to the hospital we had to wait for the MRI tech to come in, since she had gone home for the evening. She let us into the control room where we saw the pictures coming up as they were taken. A bright spot on the back of the right side of his brain. The ER doctor said that it could be anything from infection to a tumor. The radiologists at the hospital had gone home, so they sent the pictures to IMC in Salt Lake City, where they said that a pediatric radiologist and neurologist should look at them. The ER doctor phoned the resident neurosurgeon at Primary Children's Hospital and asked if she could look at them. She asked us to come meet with her Sunday morning at 8 am. They released us from the hospital and gave a prescription for anti-seizure medication.
While we were waiting for the MRI, my sister had called and asked if she could go sit with my kids, so she was at my house when we got back from the hospital. Ben slept with Erik that night, scared to leave him alone in case he seized again, but all was fine. Neither of us slept very well.
In the morning, the neurosurgeon showed us the pictures and told us what each scan looked like and why, and said it most likely is a tumor. Her attending arrived a short time later and talked to us about possibilities. He said there was about 10% chance it was an infection, and most likely was a tumor, but he wanted the neuro-radiologist to look at the pictures first before making a decision. The radiologist didn't come in until this morning, though. So, it was back home for more waiting.
This morning we phoned and the surgeon said the radiologist also believes it to be a tumor, but the surgeon wants to take an MRI of his spine just to be sure it is not an infection. If a lesion showed up on his spine, it would be a stronger chance that it is an infection in his brain, in which case surgery wouldn't be necessary. So, he wanted to get this MRI done before doing anything else.
So, now we have the spinal MRI scheduled for tomorrow afternoon and the surgery scheduled for Wednesday afternoon.
This type of tumor in children is very low-grade, they've said. Even if it is cancerous, they usually don't need further treatment outside of surgery. So that means most likely there will be no radiation or chemotherapy. We have no idea what caused it, or where it came from. Less than 48 hours ago we didn't even know it existed. The surgery will be about 3 hours...I told Erik to add about 30 minutes to that because he's so hard-headed the surgeon may have problems getting inside. The first night he'll be in the ICU and after that he'll spend 2 days on the medical floor before coming home.
Erik seems to be in good spirits. In fact, as I type this he is making his presence known by annoying every single one of his siblings. He's in quite the goofy mood today, as if nothing is wrong. Ben and I are starting to not be so emotional, but for a couple days we were a bit of a mess.
Today I am a little bummed out about having to miss the Ragnar race on Friday and Saturday, but I suppose I can do it another year. It's disappointing to put a years' worth of training into it and not be able to do it. I hope my team does really well, though, and I'm sorry to be able to be with them this weekend. I was really looking forward to it.
I appreciate all the prayers, thoughts, and offers for help. It is overwhelming at times to think of the amount of love and support we have from all our friends and family. We love you all so much! I'll try to update again when I can.
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