hi this is morgan olivia and me went to the red sox and olivia was bat girl and she got to were the world seres ring and she wore there helmets

First Day of Summer

It's been a long time since Olivia or I last posted. Since the end of treatment, we have been busy processing what we've just been through and adjusting back to "normal" life. After a very short 3 months, we found ourselves back at the Jimmy Fund Clinic yesterday for Olivia's 3 month appt. We are very, very happy to announce that the scans were all perfectly clear!

I personally am looking forward to a very relaxing and uneventful summer. Olivia, on the other hand, is understandably very focused on her leg and her desire to get off crutches. In May she saw Dr. Gebhardt (orthopedic surgeon) and was very disappointed to find that the bone was not yet healed. The good news, however, is that it is healing well and it is farther along than he expected. Olivia did not take a lot of consolation in that, reminding us that she's been on crutches for over a year. He then told her she could get around the house without them, but he was not ready to let her "cruise all over the place" without them. Our next appt. with Dr. Gebhardt is next week. We already know, because x-rays were taken of her leg yesterday, that the leg is still not fully healed. We could see a lot of improvement from the last x-ray, however, so we will keep our fingers crossed about those crutches.

Will post again after her appt. with Dr. Gebhardt. Happy Summer!

Hey Guys,

It's Olivia. Sorry I haven't written in a while. I have been so busy. My mom said she would put the pictures up from Spring Training but never did so it's up to me I guess! :) Some of the photos that I put up after the Spring Training ones are just to show you me after treatment:)

Scans Are Clear!

Great news on Wednesday -- Olivia's chest CT and bone scans are clear!

Now we'll focus on keeping it that way. The oncologists will monitor her every three months for the first year, then every six months, then once a year. She'll also be referred to Infectious Disease (my favorite people, aka the people who swore she wasn't allergic to the antibiotic that caused her rash) so that they can prescribe an antibiotic that she will be on for the next year to fight any infection that might set in in her leg.

In the meantime, Olivia returned to school a week and a half ago and it couldn't have been an easier transition. The school is very accommodating and the kids gave her a very warm welcome. This is her first year attending this school -- she went from a school of about 70 kids to 700+. I knew things were fine when, about midday on the second day, I received a garbled text from her asking if she could stay at school until 8:00pm for the volleyball marathon (no, she wouldn't be playing but she wanted to stay, watch, and help keep score). It was as if she had been going to school there all year.

She is moving slowly along with PT. The bone is still not fully healed (chemo slows it down) and until it is, she needs to use the crutches. But she is getting stronger and stronger everyday and she no longer needs the brace.

Next weekend is the trip to Spring Training. Will post pictures when she gets back. Enjoy the spring weather.

Disconnected after...

...32 infusions of chemotherapy
...4 surgeries
...8 weeks IV antibiotics
...2 fevers
...1 rash
...numerous scans/ tests: CT, MRI, x-rays, echo, hearing
...TMTC nights in CH/ days at JFC

And Olivia is done!

It was a long day at the clinic on Friday since the first blood test results showed that the level of methotrexate was too high to stop hydration. It was early enough in the day, however, that we decided to stick around and take another test later in the day. After having Olivia drink a few bottles of water, they took another sample. It worked!

Although the end of treatment is a HUGE milestone, Olivia still needs to have post-treatment scans before we can fully celebrate. Those will be done in a couple of weeks, and then every 3 mos. after that. In the meantime, however, her leg will finally be able to fully heal and she can focus on PT and becoming crutch-free. She's planning to go back to school in a couple of weeks and is looking forward to the Red Sox spring training. Maybe we'll be seeing a little sun by then too.

Thanks for your support, prayers, and good thoughts. Will let you know how the scans go.
From all of us,
Chris, Michele, Olivia, and Morgan

Operation Bieber...

...is underway!

First, an update. Olivia started the last two rounds of chemo last Monday. These two weeks are the dreaded "hydrating" weeks, which means that after an all-day infusion (including blood tests, pre-meds, and chemo), Olivia goes home hooked up to 24 hours of IV fluid. We then go back each day to clinic to check the chemo levels in her blood and replenish the fluid until the chemo is cleared from her system. Last week she cleared in 72 hours, and we are now on Day 2 of her LAST week of the same routine. SO YESTERDAY OLIVIA HAD HER LAST CHEMO TREATMENT!!! YEA!!! We won't start the celebration yet, though. It's not over until the bag is no longer hanging off her shoulder.

Now back to Bieber.

Last week, during one of the daily trips to clinic, Olivia got the idea that Justin Beiber should visit the children at the Jimmy Fund Clinic. She mentioned the idea to Jen Noonan (pictured with Olivia -- the most wonderful, most fantastic adolescent specialist at the JFC) and the two of them went off to conspire how they would pull this off. First, Olivia wrote a very thoughtful and creative letter telling Justin why he should visit. As they revised and edited the letter, and planned how they will present it with pictures, decorations, etc., Jen got the idea that they should also include a CD of them singing one of Justin Beiber's songs. She brought the clinic's music therapist on board, and today Jen and a group of kids (including Peter, who came to clinic with us today) sang the lyrics to "Never Say Never." The CD evolved into a DVD and will include Olivia reading her letter aloud at the end of the song. Other kids are also writing letters to include in the package.

How can he refuse?

Home Stretch

When we started this blog, we vowed to keep the posts positive, and to focus on the things that were going well even when we hit a low point. With the exception of my frustration with EVERYONE regarding the rash (no, I'm still not completely over it), we've been fortunate to always have had something positive to focus on. This is not the case for everyone who goes through this, and it is at those times when we hear about someone who has recently been diagnosed, that someone's cancer has spread, or that a friend has passed because of this disease, that we realize how truly lucky and blessed we are. We also realize (again) how vulnerable we are. We know that things could turn on a dime.

So we approach these last two weeks in great, but tempered, spirits. We are still in "break" because Olivia's counts were not high enough to have chemo on Monday. But she is fever-free and the counts are on the way up. She is keeping up with school work, having PT, and exercising at home. We'll return to clinic on Monday for the 1st of the two remaining treatments.

Olivia has also finally agreed (more like caved in to my badgering) to let me tell her "wish." Not sure why she's been holding out -- must be the 13 in her. We are going to visit the set of Glee and meet the cast! Morgan has never seen the show, but she's been dying to tell everyone that she's going to "hollywood!" Two wishes in one. They both deserve it.

Last(!) cycle

Back at clinic the last two days to start the last cycle. We are home for the rest of this week and next for the "break." Olivia's blood counts were higher at the start of the cycle than they have been for past cycles so we are feeling pretty good about getting through the next 2 weeks without a fever.

It's hard to believe that we now have only two more scheduled treatments. When we started, we could not imagine how in the world she could endure so many. How could we keep her strong and healthy while being hit with this time after time after time? It hasn't always been easy, but Olivia has stayed amazingly strong and positive throughout. So many things have contributed to that, and the support of friends and family are at the top of the list. Thanks everyone.

In PT, Olivia has started 50% weight-bearing on her leg. She walked yesterday with crutches! She will also start doing more exercises and begin working in the pool. Mrs. G. is a wonderful PT and teacher and we are so happy to be working with her.

Finally, although Olivia has pretty much abandoned me on this blog, she does still read it and maintains editorial control. She will not yet let me announce what her "Make-a-Wish" is, but we have received word that it has been granted. Olivia is staying very low-key about it. Morgan and I, however, couldn't be more excited. Will keep you posted.

Spring Training

Now that Olivia is 13, she makes the cut for a trip to the Red Sox's spring training at the end of March. The trip is sponsored by a (very generous) donor of the Jimmy Fund Clinic. Kids 13 and older are invited to go. They stay at the same hotel as the Red Sox staff and spend two days at spring training. No parents allowed. Yikes! I have been assured that they are very well supervised. A number of doctors and nurses from the clinic go as well as the Child Life staff. Olivia's treatment will be done by then and she is raring to go. I don't know. A sudden business trip to Ft. Myers might just be required around that time!

Things are moving along with treatment. We were back at the clinic last Monday for the next round of chemo. Everything went as planned--this was one of those weeks where Olivia goes home with an IV and backpack filled with fluid. It took an extra day to clear the chemo but she was backpack free in time for the weekend. Enjoyed a quiet time hanging around at home while Chris and Morgan went sledding on Saturday and skiing on Sunday.

Tomorrow begins a repeat of last week--chemo and then hydration until the chemo is cleared. Although these "hydration" weeks can be tough (not only does Olivia have to be attached to a backpack all week, she has to get woken up in the middle of the night to take medicine), our other option is to do this in the hospital. We always remind ourselves of that when we start to complain!

On the PT front, Dr. Gebhardt gave Olivia the OK to bear 50% of her weight on her leg. She was hoping for more, but it's a step closer. Her leg will probably not be completely healed until a few months after she's done chemo (chemo slows the healing process down) but everything looks great so far.

Just taking it one week at a time and being grateful to stay on track.

Happy New Year!

We had a very nice break during Christmas and New Year's. The big news is that we made it through without a fever. Olivia enjoyed time with friends and family, and best of all had her 13th(!) birthday hospital-free. She is now officially a teenager.

This past Monday we went to clinic to see if her blood counts were high enough to start the next round of chemo. While the treatment protocol calls for chemo a week earlier than previous cycles (due to the fact that she now has one less med.), we were told that the kids are rarely ready. So we were not surprised when they were too low. We'll stay home this week and go back again this Monday. Olivia is spending the time getting back to schoolwork, going to PT, and resting up for the coming weeks.

(Forgot to mention that PT started a couple of weeks ago and is going very well. She is seeing her former head of school, Mrs. Lisa G., who is a physical therapist. It is awesome to have someone she knows and who also happens to be very knowledgable and experienced with Olivia's type of surgery. Thanks Lisa!)

Our focus now is to get through treatment and start thinking about the transition back to school.

Until next week...