First MRI results...

Thank you to all of you who continue to pray for us.

We've had a few very busy days, and after several attempts to post, I am finally getting around to finishing. Before we went to St. Jude on Wednesday, we had a visit from a few members of the hospice team that handles this region. Obvioulsy hospice seems very premature, but these are the people who will be coming to the house every 2 weeks for blood draws and port flushes, and we were surprised to find out about many more services that they offer for our entire family for every stage of this "disease." We then went to an appointment with the oncologist here in town. We were supposed to have seen him last week, but couldn't get in until this past Wednesday. The point of our visit was to make contact with him so that we would have a local person to speak with in the event that Sophie needed care that couldn't wait for a trip to Memphis. Dr. Jacobson was Sophie's doctor here at the hospital in Cleveland when she was first diagnosed, so he had seen and treated her before. We explained to him what treatment we had completed in the past months and the symptoms we have been seeing recently, as well as the concerns we had about how she was (or was not) responding to radiation. He suggested that we increase the steroid dose to see if the symptoms would improve, and to call him for a follow up in 2 weeks after we returned from St. Jude. He was very kind and reiterated the fact that early post radiation MRIs are hard to interpret.

We left the appointment and went straight to the airport for our flight . When we met with Dr. Gajjar before the MRI and explained Sophie's latest symptoms, including neck pain, and that she threw up pretty strongly (if that makes sense) the morning we left (so much so that I didn't even want to risk her getting on the plane), and that she seems to be showing signs of hearing loss because she continually says "What?" to most things we say to her. He was quite confident that the symptoms were due to swelling caused by "angry" areas of necrosis within the tumor. He told us that in about 35-40% of children with DIPG, they don't show the maximum amount of improvement until 6-8 weeks post radiation. We had never heard that statistic before, and because he seemed so sure, we were a little less anxious during the MRI. He also recommended that we increase Sophie decadron to 1 mg daily and see if her symptoms improve.

We were able to get Sophie in for a quick hearing test before the MRI, and the results were "inconclusive" because of how Sophie's responses were "inconsistent." The test results seemed to show that Sophie has borderline hearing loss in her right ear, and mild hearing loss in her left. Also in her left ear, her tube is blocked, and she has a big piece of wax deep in her ear canal. GREAT.

The results of the MRI showed a .2 cm increase in the size of the tumor. Dr. Gajjar reemphasized the fact that this is most likely due to swelling, and not tumor growth. He said that the doctors seldom categorize a tumor as "progressive" until 4-6 months post radiation. A little reassuring I guess. He also said that the areas of necrosis looked bigger, and angrier. Good, and bad. Good because it means the tumor is dying; either because it is so embedded that it isn't receiving enough blood, or because Sophie is getting her miracle. The bad thing is, is that bleeding from necrosis can be dangerous.

So now we are home and Sophie seems the same. Really tired and amazingly grumpy from just the small increase in steroid. We took her to see a naturopathic (not even sure how to spell it) doctor today and we were told that Sophie seems to be showing high levels of mold in her body. We were given an herb and some other suggestions to try in an effort to improve her overall health so that maybe she can fight this tumor.

I still have faith that Sophie will get her miracle. Yes, my faith waivers a little when I see Sophie walk with that stiff legged walk and right hand and arm curled in. It saddens me to hear her say, "Mommy, you better help me downstairs, or I'll fall for sure." and to watch her try to roll over in bed, and she can't because she can't move her arm and leg the way she wants. Mostly I am sad for her because she has been robbed of so many things. Although she hasn't really complained much during all of this (except when it came to her port) I was so sad when she was gagging and trying to throw up with no contents in her stomach on Wednesday morning, and she turned to me and said, "I don't like to feel this way," and "Why do I have to feel like this?" To me, that isn't fair, and just like most mothers would, I longed to be able to bear this burden for her.

Oh well, hand it over to God, I suppose, because there is nothing else I can do. Right now we are desperately awaiting improvement from the radiation now that we have renewed hope. We will continue with the herbs and enzymes, as well as the energy healing. We are set to start the 3rd course of the chemo trial after being off for 2 weeks, although we just don't know if that is the right thing to do. We have until the fed ex package is delivered tomorrow from St. Jude to decide.

Please continue to pray for Sophie's miracle, and that we will continue to see improvement. I long for her to be able to walk again, and to have her smile back. Sophie is sleeping now and I should be too. I'm going to cuddle up next to my little angel.

Again we thank you for your continued support and prayers, and a special thank you to my Dad who has been a tremendous help with Sophie and Sarah. I can't imagine how we would be coping without his help, and his willingness to do anything and everything. I am so lucky and so blessed, and I know that he wishes he could take this burden from me. I love you Dad, and Marc, Sophie and Sarah love you too.