Tuesday, February 10, 2009

The results are in, and it's all good. CLEAR SCANS, words right from the neuro-radiologist. Whew, and double WHEW!!

I was just so nervous for this scan. I think I was mentally preparing myself for bad news. This way, when I was told, I would be a bit prepared and not totally blind sided. I'm not sure if that would have worked anyway, but I was just expecting it with so many children relapsing and dying from medullo. It seems like everyday I am aware of another child relapsing. Hannah is now 14 months out, and still clean. I feel like we're still walking that tightrope without the net, just waiting to fall off. At least now we're another 3 months closer to the end of the rope.

It was a crazy day. We arrived for our 9:15am MRI. They were taking us back when I mentioned the blood draw that was already set up. Like Peggy says, the PLAN was to go to MRI, where they would insert the iv, draw the blood then use the iv for the contrast during the scan. Well, that PLAN didn't happen. MRI said they couldn't draw blood because only anesthesia could do that, and they weren't there until 1pm. I made them call up to our doctor, then I ended up on the phone with the doctor's office too. We ended up going upstairs to our regular floor to have them put in the iv and draw the blood.

Now, you might be saying to yourself "so, what's the big deal?" I knew as soon as we were told to go upstairs that we wouldn't be back for awhile. It's just never quick or easy up there. I almost feel like an outsider in that office now, most of the kids don't have hair, some were throwing up in the waiting room, another was screaming in the treatment area. I feel like the people are looking at us like-why are you here? It's the new generation of people, after us. 

It wasn't too crowded, but we waited for an hour. Then I asked again if they would be taking her soon since MRI was waiting, and we were an hour late already. They still hadn't even located her chart (which had already been pulled and was waiting for them-I informed them of that right when we got up there.) After another half hour went by, I got pretty frustrated and was venting my frustrations to our friend Rob, who does the finger sticks. Rob then proceeds into the back room and 30 seconds later Hannah's doctor and his PA come out, pull Hannah's chart, and take us over for vitals. We then meet with him for a good 20 minutes, he gets the iv put in and blood drawn right away an we head back down to MRI-2 hours late. Par for the course I guess. Hannah did well with the iv, no kicking, biting, screaming, or hitting. She did shed a few tears, but she was still. Much better than it used to be. She just hates having to leave that iv in her arm for any length of time. She likes it so much better when they just put it in for the contrast then take it right out. The MRI tech was going to leave it in after the contrast, but I asked him to take it out. Actually, I pulled it out myself. I started taking off the tape because I didn't want him to just rip it off her arm. I know how it hurts to have someone adjusting and pulling the tape with that line in your vein. They had secured it with Tegaderm, as well as 4 pieces of sticky tape. I had it all off, and the tech said "you might as well just pull it out." I didn't even give Hannah time to object, I just pulled it out and he covered it. 

So, PLAN was turned upside down today. We usually have our MRI first, then meet with the doctor. I like having the MRI first because then they have preliminary results when we go up to meet with the doctor. I can get the results right then and there, quickly. So, today I had to wait. We left, stopped for a piece of pizza on the way home, which just so happened to be right next to a ceramic shop. If you know Hannah, you know how much she loved the ceramic shop that we used to have in town. So, we made a deal (yes, another deal) that we would get a quick piece of pizza, then head over to ceramics rather than doing our traditional Olive Garden celebration. She spent over an hour meticulously working on her Tweetie Bird ceramic. I got the call about 2pm in the ceramic shop that the MRI was clear. Whew-did I say that already?

I spoke with the doctor at length today about Hannah's ongoing stomach issues. She threw up again this morning as we were just about to leave the house. It seems that some of the things we have been trying work for a couple weeks, then she goes back to feeling badly again. AFter much discussion, he said he believes it could still be a result of the pfs (posterior fossa syndrome.) Remember that term? Hannah's tumor was in the posterior fossa area of the brain-the back. Surgery sometimes causes kids to have varying symptoms like nausea, vomitting, loss of balance, loss of speech, etc. These can go on indefinitely. Some kids never experience any of this, and other kids have quite severe issues. If it's not the pfs, then it could be something gastro-related. 

We will try one thing at a time going forward to try and isolate the problem and a solution. If nothing works, we will then pursue this further with a gastroentenologist. Beginning tomorrow, Hannah will no longer take her anti-nausea medicine in the morning. I had cut the dose anyway before Christmas to only half a pill. Neither the higher dose or the lower dose seemed to have much effect. By Friday, we should be able to tell if there has been any change, this giving us an idea of whether it's working at all. She will still remain on the Prilosec at night and Miralax during the day. 

I hope to get the blood results back soon too to tell us if Hannah has any bacteria in her stomach that could be causing the issue. I asked the doctor to perform this test, and although he said that his patients typically yielded low results for this, he wasn't adverse to testing her. If it does come back positive, it's treated with antibiotics.

Well I'm in bed next to Hannah right now, so I'm signing off for the night. She wouldn't go to bed and kept wandering around the house wanting me to come in with her. Thank you so much for all of your prayers, wishes and messages both here and via email. We really appreciate your love and support.

♥Kim