The doctor stopped by today and had a word with us regarding Asher's MRI scans pre and post surgery. There were two bits of surprising information, one that took ME by surprise.

It appears that there might be some spreading afterall into the spinal area. We won't know for sure until the Cytology is done in the middle of next week. They will be able to tell based on the fluid that they took out this past monday when we came into the hospital.

Also, they didn't get 100% of it out of the brain. Based on the remaining size (5mmx5mm) of he tumor left in there, most doctors might consider it a complete resection, but we'll be awaiting word from the oncologist and other neurologists prior to declaring victory. They most likely will not be going in for a third brain surgery, but will attack this remaining bit with radiation and chemo.

That part of the treatment appears to be about 3 weeks away, depending on how he heals up from the surgery. What they don't want to do is start him on the chemo too soon because they are going to be doing a follow-up Brain MRI on Monday (Once things settle a bit in his brain) to see more.

I haven't personally seen the MRI yet, so I don't know what they are talking about, but Dr. Manwaring made it sound hopeful, but deferred to his collegues (in my interpretation) in his talking to us on it.

We had heard about the "we missed a bit" part this morning and then, hearing it from the surgical RN, wasn't too worrysome to me.

Hearing about the "I think I mentioned it before, that we saw some whiteness in his lower spinal area" but we're not too sure, kinda worried me a bit. If it was bad, I feel that they would have sat us down and been straightforward with it, so that makes me feel better, but the way in that he said it, was sorta like he half-mentioned it.

Anyway, we have some more waiting to go through now to see how we are going to do treatment going forward.

IF it has spread down his spine, it means much more extensive chemo and radiation. If it hasn't, that would be the BEST case so that we can focus on the small bit left in his brain area.

This might not be a Medulloblastoma after all. It might be a PNET, which is a more severe form of tumor that's not as treatable. We'll know after surgery and treatment, which could take a while. It could be that if it goes away, it's a Medullo and if it doesn't go away it's a PNET, because this Medullo wasn't quite where it should be in the cerebellum.

http://www.childrenshospital.org/az/Site1485/mainpageS1485P0.html

I'm writing the entry from Phoenix Children's Hospital, Intensive Care Unit dialed in over the phone line from the room at about 41k modem line. ugh.

We came in today around 3:30 pm for a full body MRI and spinal tap. Around 5:45, we finally got our turn for the MRI and by then Asher was none too pleased that we had to sit in the room.

About 4:15, we were brought back into the Radiology lab and sat in one of the preop rooms watching some Nickelodeon and Disney Channel. We played with mr. Potato Head for a while, and then I made a 'spalding' like dude out of one of the small gloves and tried to play with him to pass the time. it worked for a while, and he really liked "beating me up" with it.

About 5:00, I saw Dr. Kim Manwaring wander by, so I stopped him and we discussed asher. We talked about the vomiting and headaches and he had Asher walk to me and he looked at him for a few minutes. I'd say Dr. Manwaring didn't seem too concerned about his appearance, but he was a slight bit concerned about how the back of Asher's neck looked. The bottom part of it looked as thought it was scabbing a bit and the Dr. wanted to make sure that it was healing properly, so he put a bandage back on it. Asher hated that part (he hates people touching the spot where he had surgery) and cried ferociously at it. At 5:45, we finally went back with Dr. Aubrey M. to the MRI room. Asher wasn't very happy at that point, so I put all of the stuff in my pockets (the MRI will zap anything electronic) onto a gourney and I carried asher back into the MRI room and stayed with him until he was out with the anesthesia.

At about 7:15, the Dr. came back out to tell us what he had done. MRI w & w/o contrast, a spinal tap to check the pressure, and a CSF draw so they could do a cytology on it.

As soon as Dr. Manwaring saw the MRI he said that he was going to admit us because Asher had a ton of fluid build up, it was putting pressure on his esophagus, on his spinal cord, and his head.

Asher woke up from his Anasthetic very cranky. He was thrashing around and almost hurting me and himself for a while. They gave him some demerol - 25cc (5cc, wait, 5cc, wait, 15cc) which is approximately 1.5x the "normal" dosage for a 33.5 lb boy. It sure calmed him down though finally after about 15 minutes.

I'll put up a photo as soon as I have it, but I have to wait for the CD from Radiology and I don't think that I'll get a copy until the morning. Basically, the Cerebellum was being pushed into the small area where the spinal cord goes through the brain. Because the Cerebellum was taking up room that it shouldn't have (it's being pushed down by CSF that's not draining properly), it's putting pressure on the spinal cord, and the esophagus.

What they are going to do is put in a drain or a shunt in order for the CSF to drain out of Ashers head properly, that way, the ventricle will drop to normal size and the rest of his head will go back to it's normal processing of CSF and normal size of the ventricles and location of the Cerebellum. We probably should have brought Asher in Sunday when the headaches were really bad. The operation is scheduled for noon on tuesday to do this. The follow up operation to remove the rest of the tumor is scheduled for Thursday.

We're in Asher's room now and gave Mr. Hand a face to add a bit of Levity. He seems to like it. It's taped to the end of the bed. He just fell asleep (10:45) and hopefully will sleep through the night. Asher tonight ate a few cheerios, a couple of bites of no-crust peanut butter and jelly sandwitch, 3 packages of teddy grahams, and 2 cartons of 2% milk.

We're going to start an IV of fluids at 4am because the surgery is scheduled for noon and he can't eat for 8 hours or drink for 2 hours prior to surgery.

This is the Tumor that we have to contend with. See that thing that looks like a golf ball.

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.

05/26/05 -
2:30 arrive at Radiology
2:30 - 4:30pm - Play, fill out paperwork, watch Nickelodeon, Wait.... Play in Car.... Sit in Chair.... Wait....










4:30 pm - admitted into the patient pre-staging rooms, watched a kids movie
while sitting under a warmed blanket with Asher. Asher Fell asleep.
4:50 pm - I carried Asher into the MRI room after taking all of my "stuff" out of
my pockets. I sat him down on the table, he was bawling because
he had just woke up and I carried him into a weird room with people
he didn't know.
5:00 pm - MRI
5:10 pm - Call from Dr. Bingham - Diagnosis of Mass in Brain, It's a tumor
Told to wait in hospital because we might be admitted after Dr. Manwaring
reviews the MRI after surgery.

5:50 I was escorted back to waiting because Asher was done. He woke up very cranky and I sat with him while he recovered. We asked the nurse to bring in a portable video machine to try and distract asher while we sat there recovering from the anesthetic. Once asher recovered he was extremely hungry. He ate 5 bags of teddy grahams and 3 packages of scooby fruit snacks. (that was a trend that would continue).

7:00 First MRI review with Dr. Manwaring. He came out of surgery to tell me what he saw and what he though it could be. either a medulloblastoma or an astrocytoma. He wouldn't know until after surgery though. He did say that we caught it at a very good time. he's seen a lot of kids come in in a coma because parents had waited so long.

8:00-9:00 Steph showed up with Her Aunt Rochelle and husband Barry. They were in town for a reunion and were gracious enough to give steph a ride in. They stayed until about 11 with me and Steph more for Moral support than anything.

Steph got tired and about 11 she left with Barry and Rochelle. Asher and I waited around until about 11:45 until we were finally admitted into the 100 level ward in the general patient area. We were going to get admitted directly into the PICU because that is where we were going to end up after the surgery anyway, but all of the beds were taken.

Asher was given his first dose of medicine while we were there. which is why Asher got so hungry. Also, Asher decided he was superman, and he started pushing me around in a wheelchair. he certainly had a ton of energy! I wish I had gotten picture of him pushing me around! At one point, when the nurses were talking to admitting, they asked how Asher was doing and they were joking about how good he was because he was pushing daddy around in a wheelchair.

We finally settled into our room - room 110 and got started on our steroid treatments.
steroids help reduce swelling so that the operation can go more smoothly.

http://www.cancerhelp.org.uk/help/default.asp?page=5302

Decadron will be given over the course of 36 hours or more to help reduce swelling.

http://virtualtrials.com/btlinks/n-sp96-6.html

At this point, surgery should happen sunday morning. and we're just going to be waiting until that point. We are supposed to just be "normal" in the hospital, get checked every hour for vitals and increase in symptoms, and make sure we sleep with head elevated. We finally got to sleep about 1:30 am