Posted by Scott in
Hospital Stay, on Tuesday, May 30. 2006 at
We met Dr. Kaplan today, who's head of the Neorology department and part of the tumor team at PCH. He gave us a basic overview of what's going to happen and will let us know what he knows as soon as they get done analysing the tumor. He talked to us for a short while about the programs they are a part of throughout the nation with two specific cancer programs to ensure that the treatment is all of the same (protocols) throughout the nation so that they get results faster, rather than doctors going through a 25 year study and not getting results. Being a member of this program gets us quick results as well as being part of up to date treatments from directed chemo, etc.
This evening, about 1am, I met the doctor who's head of oncology, who will meet with us once they get the tumor all removed and we start talking about radiation and chemo. Dr. Etzl.
It was a funny meeting actually. I was sitting out at one of the computers, looking at Ashers' MRI when Dr. Etzl walked over to me and asked me who the intensivist was that evening. Apparently, I look like a Doctor/R?N, or at least like I belong! I guess a computer geek can pass for a medical person. LOL.
Posted by Scott in
Diagnosis, Scans, on Tuesday, May 30. 2006 at
That's a Meduloblastoma Tumor of the posterior fossa. The very large blackish space at the middle top of his head is a ventricle which is about 2x the normal size. It's filled with Cerebraspinal fluid (CSF) that has not drained properly because the tumor is pressing against the spinal fluid drainage and isn't letting enough spinal fluid by.
Posted by Steph in
Surgery, on Tuesday, May 30. 2006 at
And, yes, Asher wanted pancakes very badly, probably worse than yesterday. And, when we found out we were delayed from 10:30am until 2pm, our hearts just sank. To tell our little boy he couldn't eat....and he didn't understand....it was minor compared to the worry about surgery, but it was the only thing we had to talk to Asher about because he had no real idea he was having brain surgery today. Scott and I were starving, as well, because how could we eat in front of our little boy...
2pm came and Scott and I were taken into a room where Scott held Asher. A nurse and anesthesiologist came in and talked to us. Then they gave Asher a drug that made him really silly for a few seconds (he had a huge smile on his face) and then he was out-of-it. His eyes were open, but he was not aware of anything and they told us that he would not remember being taken away from us. We walked down a hallway then....Asher in the nurse's arms....cheek and chin on her shoulder as she carried him. Scott and I walking the other way. They were taking my little boy into a 4-5 hour surgery.
Tears filled my eyes and quickly they stopped. I notice I'm just not comfortable crying at the hospital. I end up getting quiet and feeling down and keeping it to myself.
Scott and I went to get something to eat at the cafeteria and then went to sit outside. There is this nice outside area with benches and a bunch of trees. It was nice because it was shady but warm, unlike the hospital that felt ice cold in the waiting area.
I told Karla how I felt guilty sitting there eating. My boy was starving and now being cut into and I'm eating....but I knew I had to as I was still pumping and not wanting to put Aubree on formula. Speaking of pumping....I covered myself up in the waiting area and pumped right there. There weren't many people in the waiting room that late in the day, so it wasn't weird....except when the social worker (that I had met in the hospital the first night) stopped and asked if I had the baby with me.
The first two hours flew and the OR nurse gave updates, "He's doing good." They had started the actual surgery around 3pm by the time they set everything up. Around 7:15pm a hospital staff person came and got us and said she was bringing us into Asher's PICU room. I didn't look at that as weird or that anything had gone wrong, but later Scott said he knew that meant something was wrong.
Anyway....eventually, maybe 8pm, the neurosurgeon came and got us and brought us to a private sitting area to talk.
Asher had lost a lot of blood for a 3-yr-old...."Two cans of coke to give you an idea," he said. "We had to stop the surgery before removing all the tumor, but we got at least 2/3 of it," he continued. "We will check his blood clotting tonight and watch him closely. We will keep him sedated so he doesn't cry too much or that will increase the pressure in his head. We are pretty sure it is a medulloblastoma tumor but we will know for sure in 3 days. We will have to go back in to remove the rest of the tumor in about 10 days. We'll do a CT scan tomorrow and an MRI Wednesday. When you see him he will look puffy in the face since he was laying on his belly/face during the surgery...." I teared up at this point....I was kind of blocking out all the other mumble jumble....I knew my son would be in pain, look a bit different, and I was scared, more for him than myself.
So the neurosurgeon left and I sat there in shock, mostly. Karla wanted to comfort me and I wasn't even sure what I was supposed to feel. I didn't feel....I just sat there. Scott on the other hand was put to tears. He hasn't had much of a moment to himself since Asher was admitted, except the one day he went home to shower, so I think it had finally hit him.
We sat there for many minutes, when a nurse walked by and said our son was in his room and we could go in by him.
I was a bit nervous....when I walked in the room. The nurses were trying to calm Asher. He was swollen. He didn't have as much of a bandage on his head compared to what I had imagined. He was angry and thrashing around. After five minutes of staring at my son, I felt so nauseous. I was sick-to-my stomach, dizzy, and felt like I would pass out. I had to sit down. What's wrong with me? Here I am supposed to be by my son's side, holding his hand, and yet I am scared, worried, feeling ill. I'm feeling a bit angry that my little boy has to go through this.
Scott was by Asher's side and Asher was already starting to talk and ask for his Daddy and even asked to go ice skating! It was a good sign that he was talking so clearly.
Because of all the blood loss, they were going to do a blood test, check the clotting, and before I had left to go home for the night the test results came back saying his blood was fine.
Asher would be pretty much sedated tonight so I encouraged Scott to go home, take care of bills and get some sleep in his bed. So we did that, leaving around 11pm.
Posted by Scott in
Surgery, on Tuesday, May 30. 2006 at
We were originally scheduled for Noon, but the transportation person didn't get there until after 2:30 again. We finally are ready for Asher to go and get this tumor removed from his head.
Throughout most of the operation, we sat in Surgery waiting. Steph, Karla, and myself. Karla and I passed the time by talking about this and that. I had said my prayers and gave Asher a big kiss prior to him going off with the nurse prior to surgery. I was surprised at the tears that came. It's weird, how emotional a parent just gets when something happens to their children. I knew that, really, if there were major complications that this might be the last time that I saw Asher like this and there was a very small chance, like with any surgery, that he might not live through it, especially since they were operating on his brain. I don't think that it was the fact that he might die that was worring me the most, but the fact that he might not be himself anymore. I was confident that the doctor would find the most easy tumor to take care of, I was confident that it was going to be an AstroCytoma and that it wouldn't have spread, and that he would get all of the tumor out during this surgery. I was confident that everything would be perfect, that the tumor would be benign. Nothing had ever happened that would qualify as terrible in my life, and it wasn't about to start now.
(I'm writing this entry 12 days after it actually happened)
If I had known today what I know 12 days later, I think I would have been seriously more introspective during the surgery, absorbing it all, dwelling on the operation more, praying more. Instead, I was my 'jovial' self, without a care in the world, not really worring about it, and putting it all in God's and the Dr's hands. I knew that he was in good hands with Dr. Manwaring and the staff. I just knew that it would be alright.
We got an update from the attending RN every hour during surgery. She said that everything was going great, every time except the last time. The last time was different and I could tell it had gotten more serious. She came out and said that it was difficult for her to step away and that the update would just be given to us by Dr. Manwaring after Asher was brought to intensive care (PICU). I knew then that something was wrong because the Dr. always tells you when there's something wrong, and the nurse always gives the good news if things are going as planned.
Asher came out of surgery 5 hours later and we went to PICU to get asher settled in. They didn't want us in the room while they brought him in because he was still a bit out of it and they wanted to keep him medicated so that they would make sure he rested after surgery for the night.
Karla, Steph and I were asked to come to a different room while Asher was brought in. Dr. Manwaring had something to tell us in a different room and he led us to a little hallway between PICU units and closed the door. When he did this, I knew that there was a problem because you seriously don't take the parents somewhere quiet like that unless you have something serious for them to mull over. I wasn't sure quite what had happened, but I knew that something had.
Dr. Manwaring proceeded to tell us that the surgery went very well. Unfortunately he wasn't able to get all of the tumor out because it was very vascular - very full of veins and had bled a lot. Asher had lost about 2 coke cans full of blood and he didn't want to keep operating, because for a child the size of Asher, that's a lot of blood to lose. they had given him a transfusion of blood and hoped that his body would clot appropriately and take the blood like it should.
The tumor had been about 80% removed, but the rest was right along a major vein in Asher's head. the Dr. hoped that by leaving it in for a couple of weeks, it would drop down into the cavity made by the resection of the 80%. It should make it easier to remove once it loses some of it's blood supply and drops down into the brain a bit.
the Dr. Proceeded to tell us that the tumor was a Meduloblastoma and that it was an agressive form of Cancer. YIKES! At this point, I think I started to go numb. I didn't think that anything even remotely close to cancer would happen in my family. Nothing like that ever happens to ME! Once the Dr. told us a little bit more about what the plan was for a 2nd surger followed by Radiation and Chemo, he left us to be by ourselves for a while.
For about the next 20 minutes or so, we pretty much sat in silence in the room and cried. I don't know for sure how long I cried, but it was probably 10 minutes or so before I regained 'control' again. What I remember most was what I said out loud "That sucks" I said. "that really sucks". It's not every day that you find out that your first child has cancer, they didn't get all of the brain tumor out, he would have radiation and chemo. I was confident still that we were in good hands, but I immediately started to think about all of the movies, books, friends, family that I've had with cancer and what it did to them. I just didn't want to have my three year old go through that.
Once we were ready, we were allowed into the room and we hung out with him. They said that he would be sedated the entire night, so we decided that I should go home and get a nights sleep because I would be spending the rest of the time at the hospital while asher was there. They had put in a drain in Asher's head, so that the cerebralspinal fluid would drain off so that the ventricles could return to their normal state. This drain would be removed in 2-3 days, depending on how the drainage went so that they could see that it was clear (no blood or infection) and so that they could see how the body was recovering. During this time, we also got results back from a blood test that they did and the white/red cell counts were great so that we knew his body had accepted the blood and that he was good!
I went home at about midnight, with plans to come back at 6am because the Dr. rounds were happening at 7am and we wanted to make sure we talked to the intensivist and dr. manwaring in the morning to find out the plan for Asher.
When I went out to the car in the parking garage at 12:30, something strange happened. I basically lost it. Sitting behind the wheel of the car, for a few seconds I wondered if I would be able to drive home. I just sat there and cried for my little boy. I thought how unfair it was for it to happen to him, this young. I prayed for God to give him strength to make it through this, and I prayed for him to give the rest of us strength to be there for Asher. At least the doctor had said that this was very curable with radiation, and that this tumor responds the best of any to radiation and chemo. In my reading, I knew that there was an 85% chance of 5 year non-reoccurance of the cancer. I prayed that it would just be okay. After 10 minutes or so, I regained control of myself and was able to drive home. It really is a pretty weird feeling to see, right in front of your face, how much you really love your child.
Posted by Scott in
Hospital Stay, on Tuesday, May 30. 2006 at
Me: "I just need to say this because it will make me feel better. I'm glad that the schwartz is with us"
Dr. Schwartz: "I guess that movie will be with me my whole life"