Week 12

We got out of the hospital late Sunday afternoon. Olivia's fever finally came down and although it wasn't down for a full 24 hours, they agreed to let us go.

Olivia is still suffering (itchy!) from the rash, and they still have yet to figure out the longer term plan for antibiotics. Took a step in the right direction yesterday, however, when we FINALLY got to meet with the Infectious Disease doc. She presented a couple of potential alternatives but they are still looking into them. Not overly impressed with how this process is going and have expressed our frustration. On Monday they were actually suggesting she might stay on this IV antibiotic (3x per day, 2 hours at a time) throughout the rest of the chemo!

In the meantime we are moving forward with chemo, and Olivia saw Dr. Gebhardt (orthopedic surgeon) yesterday for another follow-up. (She was bit nervous after ending up in the OR after the last follow-up!) Dr. Gebhardt said her graft looked like "it came from her twin," and it looks "perfect." She's ready to start PT, and he was quite surprised and impressed with how much she could already bend her knee and lift her leg.

Next week stitches come out and hopefully we'll get some answers on the meds. Hope everyone has a wonderful thanksgiving.

5 Days and Counting...

We are still in the hospital and the end is not yet in sight. Yesterday Olivia broke out in a rash. By midday she was covered. They've got Infectious Disease, Dermatology, and Oncology involved. Of course the teams have yet to consult directly with each other and there is no definitive plan. If Olivia had a dollar every time someone took a look at her, she'd have a great start on her college tuition. Hard to keep your spirits up when doctor after doctor comes in but has nothing to say except "we can't be sure, we've asked 'so and so' to look at it," etc. I do realize it's complicated, I know the Drs. are dedicated, and I see how busy they are, but I'm tired of hearing the buck getting passed. We need a plan. And we need one soon.

Enough venting. We will get through it.

In other news, Olivia did get her brace yesterday and it is a definite improvement on the cast. She is now looking forward to getting the go-ahead to start PT!

Stay tuned...

Week 13, con't.

I don't know how I counted the weeks last post. Maybe I just typed the wrong number, or maybe it was wishful thinking. In any case, THIS is the real Week 13. And we are back in the hospital.

We arrived at clinic on Monday for Olivia's routine blood draw. When we arrived, her temperature was just over 100. That, plus 0 ANC, equals hospital. I guess it shouldn't have come as a shock. This was the exact same timing of the last fever. 12 days post chemo when her counts were at their lowest. Next time I'll be more mentally prepared but I refuse to pack a bag in anticipation.

We had hoped that we would be able to leave this evening but her temperature was back up at the last check (after being normal all day). Now we really, really hope to be able to leave tomorrow!! There is no infection -- and the ANC is on the rise. Keep your fingers crossed.

Our "silver lining" for this is that since she gets fitted for a brace tomorrow morning at 8:30am, we will avoid a rush hour commute to get back here to the appt. And we just got word they are moving us to a different room -- on the "B" side (the bathroom, more space, and a window).

Until tomorrow...

Week 13

Sorry it's been so long since the last post. Started one over a week ago, but never got back to it. Odd how we feel we're in a never-ending process but then the time passes so quickly.

We left the hospital post-surgery on Saturday, the 30th. Just in time for Halloween. Then it was back in on Monday for our last "scheduled" hospital stay. Definitely a milestone! Olivia got the last dose of one of the chemo medicines, which was the one that required an overnight stay. From now on, she will get all her treatments outpatient! Yea!

Olivia is now taking some pretty strong antibiotics -- IV for 4 weeks 3x per day (my honorary nursing degree is in the mail), then by mouth for about a year. The culture taken from the surgery showed some bacteria but nothing grew out of it. They treat it as infection because of the allograft. The bacteria can attach to it and infection could potentially grow much later. Makes you wonder what other little surprises could be in store.

We are home now on the two-week break, hopefully back to an uneventful routine.