Merry Christmas

Hi everyone,

We are happy to say that we are moving forward with Olivia's treatment. I never thought I'd say I was happy about her getting chemo, but after the last few weeks, we are glad to get back on track. After today, she's on the 2 week "break" and is looking forward to Christmas, her 13th (yikes!) birthday, and New Year's.

Wishing everyone a great Christmas and happy, healthy 2011.

It's Morgan

Hi it's morgan and well i'm sitting here doing nothing. Olivia is going to the jimmy fund clinic today as well as yesterday and i think tomorrow too. peter is coming to play wii with OLIVIA and me . FROM MORGAN :) P.S Hi morgan and amanda.

Week of Rest

Never a dull moment at the Jimmy Fund Clinic. Last week we were so focused on getting free from hydration that we forgot to mention the Red Sox players and Wally who were visiting. Olivia got autographs and her picture taken with them, but even after all that the big question of the day was, "Which players were they?"


Santa is visiting every day this week, and the place is decorated like a candy land. There are gifts for everyone, and best of all--free parking!

We did get to see Santa on Monday but Olivia's blood counts were too low for her to receive chemo. Now we wait until next Monday. Although we hate to have delays, we've decided this is a good thing. She'll rest up and get that much stronger after healing from the rash and before starting the final two cycles.

Cleared!

Music to our ears.

After a very long, delayed "clearing" last week of one of the chemo meds, we were hoping that we'd get back on track in this week's repeat round. (Olivia comes home attached to 24 hour fluids until the medicine is cleared out of her system. Last week it took 7 days due to the IV antibiotic, rash, etc. When you don't clear to a certain level within 72 hours, you have to get to a lower level the following day, and so on, until finally it needs to be completely undetectable.)

72 hours was yesterday. She did not quite make it. We were somewhat doubtful that today she would clear, even though she was within tenths of the goal. Once it gets down to the low levels, it tends to linger.

But she made it! A full night's sleep ahead and a weekend of rest. Next week she starts another cycle followed by a two-week break. Have to be extra careful about fevers (which buys you an automatic admittance to the hospital) but we are looking forward to being home for the holiday.

Enjoy...

Thanksgiving

Had a quite the week. Enjoyed Thanksgiving with my sister and family (Olivia had chemo the day before) and all was good until last Saturday when her body was aching and the rash was not really getting better. We'd been to clinic or hospital every day for hydration bag changes (always has hydration after this particular medicine) and no one thought anything of the pain or rash. Saturday night she could barely move and her arms broke out in blisters. I called the hospital and told them we wouldn't be giving her the IV antibiotic until they saw her the next day. By morning she had more blisters and when the oncologist saw her he was shocked. Dermatology and Infectious Disease were called and it turns out she is allergic to the IV antibiotic after all. They did not even consider it beforehand because it is so "rare."

She is doing well now that she is off the medicine but not without a lot of unnecessary suffering. If they had had a plan in place when they said they were going to, the rash would never have gotten this bad. Funny how they could come up with an alternative antibiotic so quickly once there was no way she could stay on the IV!

Now we're just focused on resting up and getting back on track for the remainder of treatment. We begin again Monday. Have a great weekend!

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...