End of Treatment

Monday brought a rough start to the week for us. We awoke early this morning to a nurse telling us Maggie had an ultrasound, but nobody knew why. We then were told a bit later that they had to redraw Maggie's labs because they looked "funny" this morning. You never want to hear that word. According to her 4:00am labs her white count was 800 and ANC 0. Yesterday her white count was 7,000 and ANC 5,000. No cancer parent ever wants to hear something like that. We prayed and were sick for an hour before the results came back similar to yesterday. Thankfully it was a faulty lab draw and Maggie continues to be in remission. This morning was a reminder to us that we are easily shaken with the talk of the "R" word.

Maggie has begun getting "end of treatment" tests. That's right, Maggie is finished with chemotherapy. We read of another little girl in Maggie's similar situation who ended treatment a month early after having pneumonia, but of course had no idea at the time that we would be walking in similar footsteps. The head doctor of oncology at Cincinnati Children's does not believe that giving her 2 more months of treatment will do anything to the prognosis of the disease, and if anything it could put her at higher risk of getting sick once again.

We are very happy to be finished, though we didn't get to properly celebrate the last 6-MP dose (or as Maggie calls it, her "rit," as in favorite). Of course, I grow a little scared about ending early, but we have learned in the last 7 weeks the risk/reward scenario. We lived it more than once and we don't want to put her in that situation again. Maggie's body has definitely gotten a beating from the last 20 months of chemo, and I don't believe she would be able to take much more.

With that, Maggie received an ultrasound of her abdomen today. Her liver was what initially brought us down here (when after further study, the liver wasn't the problem, the ulcers were). On March 13, she received an ultrasound which showed her liver to be enlarged. While her liver and spleen are still a bit enlarged, they are not of any worry to the doctors. They expect that after treatment and TPN. She also received an echocardiogram today and will be getting an EKG as well. They want to see how all of Maggie's organs are doing after having 20 months of treatment.

The doctors are in the process of scheduling a care conference to bring all those involved in Maggie's care (GI, pulmonologist, oncologist, etc.) to come to the table to discuss the goals for Maggie-- goals while still here and goals to get us home. Hopefully at this conference we will have a better idea of when we might be seeing our home again. It sounds as though Maggie may remain on oxygen when going home, given how injured her lungs are. She still continues to linger on less than a liter of oxygen. She still has de-sating episodes, mainly while she is sleeping and expending energy. We will see what this week brings, though I will admit, I am itching to get home. I would like to see my lilacs this year as last year we were in the hospital as well.

Maggie continues to amaze the doctors with her strength. Just a little over a week ago she was on the ventilator and only a week ago she was unable to hold her head up and shook violently. She is making strides, and we can tell she is feeling better as she is beginning to communicate with us once again (this makes Daddy especially happy). Her voice is still weak, but it it's the cutest little thing and we just smile anytime she speaks. She is very excited to watch the television and even more so the food trays or bags of food that we bring into the room. Though she isn't eating a lot, she is picking up from where she left off.

We continue to hope to make progress this week so that we can get one step closer to going home.