Just wanted to pick up from last post. (Just for you, Karen!)

We were at the clinic until 6:00pm last night but there was still too much medicine in her blood to stop hydration. So home we went with the backpack filled with fresh fluids. Returned again today and thankfully the level was low enough to stop. This is the official end to the first cycle. Just in time for the weekend! Chris and the girls are planning to go to the Cape, while I go to VT to join my HS buds for a collective birthday celebration...

Enjoy the weekend!

It's hard to remember what day it is when going through all this. I didn't realize that it's alreadly been a week since the last post.

We did not, as we had hoped (and begged!) to do this week's chemo at home. We compromised with 2 nights in the hospital and the rest at home. The Dr. convinced me when he said if it didn't go well at home, we wouldn't be able to do it for awhile (or again!). I didn't really believe him but thought it best since Olivia did get sick last time, to at least start out in the hospital. (She did not get sick from the chemo but was so anxious about it beforehand that she got sick while waiting to get started.)

She did great in the hospital. We went home yesterday afternoon with the portable pump and fluids and all went well last night. We are now in the clinic waiting for results. If she has cleared the chemo, we go home without the pump until Monday. If not, we go home with it and come back tomorrow to check it again. Beats staying in the hospital.

Just to clarify this protocol. One chemo cycle for this is five weeks long. She does two drugs the first week, gets a two-week break, and then a third drug the last two weeks. So the break is in the middle of a cycle, and we are just finishing up the last week of her first cycle. Monday we start the second five-week cycle, and then she has surgery. The extent of that will depend on how well she responds to the chemo. Then she starts right back in with more chemo.

I'll finish this later... writing from the clinic and we are getting called.

Hospital

Hi everyone. It's Olivia, Cami and Amanda, and we want to tell you about our little story. Here it goes. One day I was bored then BOOM the Michelsons came to visit me. They brought me a lovely little smoothie and cookies!!!! We had so much fun when we played in the play room. Also we watched the movie Karate Kid (the new one first to see it on dvd!) Then here comes the fun part. We put gloves on our FEET!!!!! Cool huh!

Hospital Update

Feeling good after a couple of rocky days. We arrived at the Jimmy Fund Clinic at 9:15am on Monday and because of some administrative issues didn't get admitted to Children's until after 5:00pm. Infusion didn't start until 8:00pm. Olivia got a little sick during the night and early morning, and nauseous on and off since then. The good news is that she is clearing the meds quite well and we most likely will be able to go home tomorrow. (This particular drug, methotrexate, is so toxic that they give a "rescue" drug along with constant fluids until it is all out of the system.)

Other good news is now that they know how her body handles this particular drug, we should be able to do future rounds as outpatient. It means we'd still be going into the Jimmy Fund Clinic every day, but that is a small price to pay to be able to sleep at home each night.

As always, visitors help immensely at keeping her spirits up. So thanks Diane, Cami, and Amanda, and of course Morgan, Peter, MIchelle, and Cheryl for coming to see us! Also thanks for all the well wishes and comments. It really makes a difference!

The end of our two week "break." Olivia felt really good overall and the time spent at the beach (Cape and Maine) was a great way for her to forget about the road ahead. The weekend was quiet -- we're all a little anxious about the next drug and how well she'll be able to tolerate it.

I continue to be dumbfounded by the use of chemotherapy. Yes, it works to kill cancer cells. But it also does such a number on the body that it's no wonder it's not a cure. I struggle with the knowledge of this as we progress through this cycle. I also couldn't imagine not doing everything possible to make Olivia well. For now we'll just take it one day at a time. And find the joy in each day.

We had our first "clinic day" today -- a weekly appt. in which Olivia basically gets monitored for how her body is taking the chemo. Exam results were "perfect," which means that she doesn't show any side effects so far. The "team" also determines when she is ready for the next treatment. (There is a mandatory 2 week break between the first drugs and the next one. We are in the second week so most likely when we go in next Monday, she will start the next drug.)

In the meantime we are taking advantage of the rest of our time by visiting the Kasparyans in Maine for a couple of days. I will work and the girls will enjoy the beach and boating with the kids.

Here's a word from Morgan:

Hi I'm Olivia's sister Morgan. It's not fun to have a sister in the hospital. Because I'm 9. And I miss her. Meanwhile I'm going to horseback riding and horseback riding camp. I miss Olivia not coming to riding. Her favorite horse is Freddie.(: (: byyyye

Hey guys it's me, I just wanted to say thank you for all the support. It really makes me feel good to read all the posts. I wanted to tell you guys about a little girl that I met. So when I went in for the first set of chemo, I was put in a room with a little girl maybe like two or three years old. Her name is Phoebe. Phoebe is so funny and sweet, she just made me and my mom laugh all the time. Well the last day I spent in the hospital were probably the cutest moments with Phoebe. Her grandparents and her siblings were coming in to say hi to her and she was talking with them on the phone. She was telling them what she wanted them to bring for lunch. She was like in her little voice (that was actually very loud for her size), she was saying "I want pasta and meatballs for lunch! I love you too. OH WAIT don't forget the secret sauce! bye." It was so cute. She was always very happy and when her grandparents first told her that they were coming to see her on the phone, Phoebe got so excited she screamed "OH GREAT!" It was so nice. So that is my story of little Phoebe. I will remember her for probably a very long time.


XOXO <3 Olivia

Olivia did incredibly well with the first part of the treatment. She tires easily, but has had almost no nausea. There are multiple meds to keep ahead of that, and I now feel like a walking pharmacy with all the meds we came home with. Quite an adjustment for someone who would barely even give the girls Tylenol or Motrin.

Am writing now from the Cape where we are spending the rest of the July 4^th weekend with our very dear friends the Shays at their beautiful home in Hyannis Port. We have spent the July 4^th weekend with them for the last 15 years. There are many traditions, including the 4^th of July parade that the girls look forward to all year long. The whole town participates and everyone creates their own float. There is a little competition among families to come up with the most original and elaborate float. With Monica in charge, the Shay float is always a big hit. They have been flower fairies, “little lady libertys,” groovy girls, mermaids, Harry Potter characters…just to name a few. The parade was a day early this year so we did miss it, but Morgan, India, and Sophia kept the tradition going as rock stars.

We will spend today relaxing and going to the beach before heading back home. We have a couple of weeks to rest before we start the next part of the cycle.

Happy 4^th!

I'm surprised at how time flies in a hospital. Have we really been here for 10 hours?

Olivia started her first treatment today. It was a long day of consents, exams, blood work, and now finally settling into a room to start the process. She was in great spirits all day, enjoying a few hours making bracelets with the adolescent specialist at Dana Farber, whose full-time job is to set up activities for teens to do while they are hanging around. She didn't look older than a teen herself. According to Olivia, she is a 40 on a scale of 1 to 10!

Olivia also met a 13-year-old on the floor who is going through similar treatment. She just recently lost her hair and Olivia had a lot of questions for her. Her positive attitude about it and the fact that she is going through the same chemo protocol made Olivia feel less anxious about it all.

Your comments and support have also had a great effect on her. She thinks it is amazing how many people care about her. Is now resting peacefully and we will hopefully have an uneventful night.