Starting all over...

Maggie went to Almost Home this morning to start the phase she began in December, all over again. She is still recovering from the heavy chemo several weeks back, in some ways. Her appetite, sleep, general happiness and independence are still a bit off. She wakes up about every hour most nights. She's now experimenting and interested in trying lots of food (this is good) but she doesn't swallow much at all (not as good). Food sits on her tongue or sticks to the roof of her mouth for several minutes or several hours. Eventually she gags and reaches in her mouth, we put our hand up to her mouth and she unloads.

She had a bone marrow aspiration which was a recommended part of the treatment protocol (which we didn't expect until we saw Dr. French in the procedure room, this is where they check to see if there are leukemia cells or not in the source of all blood cell growth). Dr. French's preliminary look in the lab was that it looks "good." This is ALWAYS nice to hear. When we know that they're checking her spinal fluid or bone marrow for cancer cells, we always get nervous--as you could imagine. But it brings a nice relief knowing that it is clean and that we're still on track. There will be more precise results tomorrow. I'm not sure they'll call us though--I think we'll trust that it is okay unless we hear otherwise. Preventing relapse continues to be our biggest treatment goal--and the source of much of our worry. But Maggie is doing great so far.

They also harvested some spinal fluid and put chemo back into her spinal fluid. This helps to prevent a relapse in her nervous system. Finally, she received a relatively low dose of methotrexate, a chemo drug. All in all, it was a long day and it took longer than usual. It was difficult keeping Maggie from eating leading up to the procedures--that's always hard.

Otherwise, Dr. French is still working hard to improve Maggie's food intake and now her sleep patterns. We're going through some initial steps to seek improvement. He has backup plans in mind, but we'll see how it goes. They also took a stool sample today to see if Maggie's abdominal pain might be from a virus or some kind of
infection. Maggie had 4 dirty diapers during our hospital visit today--something isn't quite right. Dr. French almost got a lap-full when he was finishing her spinal, but he was a good sport about it. Something is still causing some pain and discomfort but this is another time when Maggie being so young works against us. She can't tell us where/how it hurts.

We started her 5-day week of steroids today, as well. That has been a disaster at times in the past. We're hoping for better luck, similar to the last time when it went significantly better. She's on quite a few medicines now--in fact she didn't keep her nighttime doses down. We are going to have to stagger the meds to keep her from throwing up.

So, that's the medical update for today. Tuesday is also Maggie's bath day and we follow that with a dressing change over her broviac access. She wasn't feeling well enough to enjoy her bath like she normally would. She might be achy on the spots on her back where they accessed her bone marrow and spinal fluid. Anyways, it was a busy day today, and everyone in this household is tired.