Hello Everyone!! I just wanted to post an update on our little Malia that her Mom sent out last night ~ Thanks again for all of your support!
FRIDAY, JULY 18, 2008 05:21 PM, CDT
Yesterday we received some very positive news...YEAH! We spoke with the oncologist and he said that they were still waiting for one test to come back from the pathologist. Even though they cannot give an "official" diagnosis until that comes in, everyone is in agreement that they do not think that it will be anything different from the working opinion of Hepatoblastoma. He also said that the entire panel of oncologists, radiologists, and pathologists all agree that the little "thing" near the heart does not appear to be tumor material and that it's nothing but a cyst. So, they will not be doing a scope to go after it. Of course, there will be more CT scans to monitor it and if anything changes then they'll explore the idea but for now it's nothing but a cyst.
He also told us what the plan is for chemo. We're very happy because it's much less than what we were anticipating...YIPEE! It will be in patient but it will only be 3 days and will only be 3 months (3 days per month in the hospital). How great is that?!
One other interesting thing is that Malia has actually had a pregnancy test. Apparently some tumors secrete HCG which is the same hormone that the placenta secretes during pregnancy. They ran that blood panel when Malia first arrived here at the hospital and the doctor was expecting it to come back completely normal. The normal amount of HCG in a healthy body is 6, Malia's came back at 300,000! This is a bit odd because nobody on this panel had ever heard of Hepatoblastoma having increased levels of HCG. The doctor had researched other literature and there were some cases that were cited that did have both increased levels of HCG as well as AFP (another marker which was expected to be elevated from the tumor). The interesting thing is that the doctor ordered this test again now that the tumors are gone and it came back at a level of 15! What a huge difference. He said that he's taking that as confirmation that there is no more tumor. So that, combined with the appearance of the "thing" in her chest is why they are not going after it unless the appearance changes.
Because of some of these oddities with Malia's case, we are giving consent to have the tumor and some of her blood, along with some other samples from Kyle and myself to be sent to the Children's Oncology Group (or something like that) for research and analysis. That way it can be recorded and hopefully aid other families who are entering into this process.
As far as our sweet Malia, she's doing well. She's been in pain but the morphine is definitely helping. Kyle and I have just gotten to the point now where we are not asking if she wants to do something, we're approaching it as though there's not an option to not (i.e. drinking fluids, getting out of bed, etc.). She is definitely experiencing some depression but we can tell that the more we get her out of bed and out of the room, she does better and interacts a little more. We took her out of the room for the first time yesterday and Kyle basically just carried her around the unit floor after much protest and crying, she finally calmed down and I think she enjoyed it (as much as she could). Before we got her back into bed, we had her stand on her own two feet (obviously with our support) and had her take a couple of very slow steps. That completely wiped her out and she slept for hours after.
I went home last night so I could get some uninterrupted sleep and see Makena in the morning (which she was very happy about) while Kyle stayed with Malia. Before I left we got her in the wheelchair and wheeled her around the unit floor for a bit before going downstairs to just sightsee and explore. Again, at first she protested but once we were out she wanted to stay out. When we got back, she again stood up and took a couple of assisted steps and it was without as many "owies" and tears. We were giving her medicine about every two hours or when she was starting to complain about pain again. The great thing is she actually went from 12 midnight until I got here at about 7:45 am without additional morphine and Kyle said that she was moving about in bed with no problem at night. So we're taking baby steps but she's definitely moving in the right direction.
This morning she had to go downstairs for some testing of her kidney functions so that they have a good baseline to monitor during chemo. The doctors are all in agreement that she's not ready to go into another operation to put the port-a-cath in which is the central line they surgically implant to administer the chemo. She still needed a bit more time to recover but it looks like they’ll be doing that tomorrow. So we'll be in the hospital at least another week and a half before we can go home. We are so thankful that we have so much support from our friends and family that are helping; not only physically helping with Makena and visiting Malia but the amount of support that we're receiving with messages, emails, etc. is very comforting and definitely helps us feel that we are not alone. Thank you! We love you all.