Settling In

We have been having a hard time controlling Annabelle's pain. Once the Loratab kicks in she is good for an hour or so and then she slowly goes downhill until she can have another dose. After speaking with Dr Brockmeyer and Dr Bruggers we decided it would be best to admit her again. It probably sounds like bad news but really it is better this way. They can keep her comfortable and we won't be running back and forth with all her appts this week. Besides, she likes ordering food here. She can get whatever she wants whenever she wants it! She hasn't had much of an appetitie at all so I let her order whatever she wanted for dinner and she picked quite the nutritious variety: Corndog, Soft Pretzel, White (Vanilla) Ice Cream, Chocolate Chip Cookie and Milk. I just hope she eats any of it at this point! Then we'll focus on some healthier options.

Tomorrow morning she will be having surgery to place a central line. If you're not familiar with what that is, here is a paragraph from the handout they gave me: "A tunneled central venous catheter is a tube made of soft, flexible plastic. the catheter is tunneled under the skin and placed in one of the veins just under the collarbone. The catheter is long enough to reach the large vein that enters the heart. This vein is called the superior vena cava. The catheter is tunneled under the skin to help prevent infection. There is a small cuff around the catheter about one inch inside your child's skin. Skin grows into this cuff and keeps the catheter in place. The cuff also acts as a barrier to infection. Tunneled catheters have one, two, or three outside openings (lumens)."

Annabelle will be getting a double lumen. The reason we chose this is because she won't have to be poked all the time anymore. They can draw blood for labs and give treatments through her central line. The down side is that she can't swim with it and you have to be careful and cover it while showering (which she won't do anyway), so she'll probably be getting sponge baths! We'll just have to see. The other option was a port (port-a-cath) which stays under the skin. You can swim and bath as normal with a port, but you still have to be poked to access it. She is tired of being poked so we went with the double lumen.

At the same time as the central line placement she will have a bone marrow biopsy. They will take a sample from each side (they do this on the iliac crest or back side of your pelvis bones). Good news would be no cancer in there. I'm being optimistic, but if she does have Ewing's Sarcoma, which is their guess right now, it is known to spread to the bone marrow, especially in kids. She's also set up for a bone scan, CT scan and echocardiogram this week. Whew! That's a lot of stuff. They are having a hard time getting an exact diagnosis so additional pathology is taking some time. The latest word today was that we can hope for that to come by Friday. That's why we're getting everything done now, so we'll be ready to start treatment asap.

Sorry if any of this is confusing to all of you trying to keep up with us! I have definitely benefitted from my time working at Montana Cancer Center in Missoula. The terms and most of the procedures are familiar to me, which is a relief. I can't imagine trying to carry on a conversation with the doctors or nurses without having heard most the words before!