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...

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.

Surgery #2

I guess we did speak too soon.

Our appt. on Tuesday took a VERY unexpected turn. Olivia had had a small amount of drainage from one area of the incision. It was looked at on Monday in clinic by Dr. Sampson (plastic surgeon) and he was not at all concerned. He and Dr. Gebhardt looked at it again at the appt. on Tuesday and since there was still some drainage, Dr. Gebhardt did not want to take any chances.

Olivia was in the OR at 5:30 that evening. They opened up the incision and drained the fluid. Turns out they did the right thing. We got word today that they found something in the cultures. We are not sure exactly what the plan is (depends on which service you speak with), but one thing we do know is that she will need to be on some pretty strong antibiotics for a long time.

I have to admit it has been hard news to take after getting such stellar reports on the healing process. We'll get through it.

On the bright side, Olivia had a very fun day today trick-or-treating all over the hospital, decorating cupcakes and just hanging out in the resource room.

Moving Forward

We are here again at the Jimmy Fund Clinic. Finishing up Week 5 of the first cycle of chemo post-surgery. We're not sure if it's safe enough to start counting down but we're going to do it anyway.

15 weeks to go.

Tomorrow is a big day. Olivia has her first follow-up appointment with Dr. Gebhardt (the orthopedic surgeon). She is hoping to hear that she can get rid of the cast and be fitted for a brace. That means she'd be one step closer to not needing the crutches. Hard to imagine but this is one appt. we are actually looking forward to. Until then...

Make-a-Wish

Turns out that Olivia will get a wish! All children with life-threatening illnesses are eligible and DF makes a point of referring all their patients. We won't say what she is wishing for until we know what is possible. I can only say that she is not being influenced by her parents! (Don't you think a (free) trip to Hawaii would be nice?)

We are nearing the end of the two-week break. Side effects were a little tougher this time around, but her counts are on their way back up and she is feeling pretty good. The plan is to start the next chemo on Monday.

Olivia also now has a tutor every day that we are home and she is feeling up to it. She started shortly after surgery and it is going very well so far. Just about caught up in all subjects (and ahead in Reading/LA). Nice to have a daily routine.

Olivia says hi and will write soon!

Back to Chemo

Just a quick note to say that Olivia got the okay from the surgeons on Tuesday to start chemo. Her leg is healing really well. The chemo will slow the healing down but everyone is happy with how things look.

Came in Wednesday and will go home on Friday afternoon, followed by two weeks at home. Still a long way to go but we know what to expect and in a few months Olivia will be able to start focusing on getting back on her feet!

Bored:)

Oh my god. You guys do not know how boring it gets. If it's from sitting in the waiting room or just being at home... it can get BORING. Im doing good and my cast is almost signed up! Don't worry i will leave some spaces for people who want to sign later. Love the support and everything you guys are giving me.

Love you guys<3
Olivia

Hospital Stay

First day home after 7 days in the hospital.

Thanks Summit UE for the great Welcome Home sign. Morgan couldn't wait for Olivia to see it and point out who drew each letter!

Our stay was mostly uneventful. Lots of rest and recuperation. A few days after surgery, the bandages were removed. Olivia couldn't wait to get rid of the "fluff." When asked how many stitches she has, the Dr. told Olivia that her chart would say TMTC -- too many to count! That wasn't good enough for her so the nurse started counting. 86 on the outside! And many, many more on the inside.

Next, a removable cast was made. It took a few tries to get a comfortable fit, but she got her favorite color (hot pink) and began to have it signed. Finally, she had a couple of PT sessions to learn to get around safely and with minimal weight-bearing. She won't be doing anything beyond that for about 3 months or so. She did great and if there's anything she has to learn, it's to slow down.

For now, she needs to rest and heal (and maybe start doing a little homework!).

Surgery

It's about 11:oopm and Olivia is resting. We arrived at the hospital at 6:00am and she was in the OR by 7:30am. Almost 12 hours later we got the word that she was in the ICU. She did very well through it all. We are incredibly thankful to have had three excellent surgeons on her case: Dr. Gebhardt (the main guy), Dr. Weldon (the vascular guy), and Dr. Samson (the plastic surgeon). The procedure went better than expected -- she didn't lose any blood vessels, and they did not have to use muscle to help close. Both of these will make a huge difference in the healing process and in building her strength. She'll be in the hospital for 6 or 7 days and then a little break for healing before getting back to chemo.

We also got the GREAT news from Olivia's oncologist, Dr. Renella, that her scans came back clear. We still have a long road ahead, but the results have all been positive so far. Thanks for hanging in with us. Your love and support make a HUGE difference in keeping Olivia positive and helping her to stay strong.

m

Goodbye Summer

It's been a busy week. Spent a beautiful Sunday in NH with the Burkes before Olivia's chemo treatment last week. Best way to keep her mind off chemo? Tubing! Chris is a little sore from the face-plant he did early in the day. Wish I had that on video.

Olivia was barely done with chemo when she had braces removed, then scans and tests in preparation for surgery.

So one leg of the process down. The shortest one, yes, but at least we are moving forward. The next part is surgery. Not sure what is worse. All the chemo or the thought of Olivia having to go through major surgery and extensive PT. I have tried every which way to find a loophole. However, I have now accepted that it is essential to the treatment. How many times and different ways did the doctors have to explain that to me? It wasn't until our friend (and outstanding orthopedic surgeon) George's eyes bugged out of his head (like, was I insane?!) that I decided to accept it and move forward. But one can still dream.

Olivia is doing very, very well. Her oncologist told her last Monday that she was doing better than all of the kids he sees. That was a nice send-off for a beautiful weekend at George and Elizabeth's in Maine. Great weather, food, company, fun.

Now we have two days before surgery with NO appointments. Olivia has heard from many of her teachers at school and she is in touch with a couple of girls from her classes. She won't attend but we will keep her as up to speed as possible with a tutor.

Will be back post-surgery...

(And maybe I'll take some time to figure out how to format these posts.)

From Morgan

Hi

This is Morgan. I'm at Dana Farber right now with Olivia and my mom. I'm kind of bored. We are just waiting in the waiting room right now. I think they are going to take away Olivia's hydration today. I was at an arcade yesterday and I got something for Olivia. It is a necklace. It is a heart with rhinestones on it. I just wanted to say hi.

Hi guys,
It's me. Sorry I have not posted in a long time. I have been busy. Well right now I'm very bored just sitting in the waiting room waiting for my blood results to come back. We are all hoping I clear the medicine so I can get off of this bag of fluids I have to have. I was so close yesterday. I was like 1/100th off of where I have to be (which is very close). Yeah I was disappointed that I did not clear yesterday but I guess that's what today is for right! I have been feeling great and I really LOVE all the support that you guys have given me.

Lots if love,
Olivia:)

Thanks

Home after a long day at clinic. Arrived before 9:00am and returned at 7:00pm. The day was somewhat typical, except that instead of pushing a wheelchair over the PMC bridge to Children's 6 North, we came home! We'll have to return to clinic each day until Olivia's body clears the medicine, but it sure beats staying overnight.

I didn't want another day to go by without thanking everyone for everything that you have done and are doing. The kindness is overwhelming. The latest example: this past weekend I received an email from a high school friend of Micheline Cacciatore, one of Olivia's ballet teachers. She had learned about Olivia through Micheline and wanted to do something. So she offered to lead us all in a little yoga! I'm still speechless.

All of you are so supportive -- calling, sending notes, sending food, taking care of Morgan, or coming by to boost Olivia's spirits. It is what keeps us going in this seemingly never-ending process. THANK YOU!

Hotel California

NOTE: I thought I had posted this earlier this week -- just discovered it was still in draft. We left the hospital on Wed. eve. and Olivia is doing great. Counts rose fast, no infections, no fevers. So we've been we're enjoying the days at home and the weekend. She goes back on Monday for the first of the final two weeks of chemo before surgery.

Original post from Wednesday, August 18th:
Am writing from the hospital today. An unexpected visit on Monday afternoon and we are still here. We were on the second week of the break when Olivia spiked a fever. This is not uncommon since the whole purpose of the break is to allow time for her blood counts to go down and come back up again. Problem is they go so low that she is at high risk of infection. Wish I had known in advance that when there is a fever, you have to go to the hospital and stay until 1. blood counts rise; 2. no fever for 24 hours; and 3. blood culture has 48 hours to show infection! We could get out this afternoon, but it's going to be a bit of a negotiation. Olivia has a few mouth sores and she's gotten a little sick from the pain meds. So now they also want her to go to oral meds. and be able to eat before we leave. "You can check out any time you like, but you can never leave..."

On a brighter note, lots of nice people on the floor. We've met some great families (mostly dealing with leukemia) and look for them when we come. We are always hoping that they've been able to go home, but also feel a little sad if we missed seeing them. Everyone we know is doing well so that is something to be grateful for!

Pan Mass -- Part 2

Hi all,
We'll try to get more frequent about these posts. Our schedule is so unpredictable that a week flies by before we know it. We spent the weekend at the Cape. Again, we are so lucky to have such generous friends, the Shays. Enjoyed the beach and the boat. I don't think they realize how much it means to us to have the opportunity to get Olivia out doing normal summer activities.

The Pan Mass Challenge also took place this past weekend. Jack made it to the finish!!! We never doubted him for a minute of course. Amazingly one of Olivia's doctors at Dana Farber spotted him on his bike and rode up to him to tell him who he was and to wish Olivia well. The doctor was on the team who initially reviewed her case, but was about to go off on another assignment. We clearly remember him because he did such a good job of dispelling the myths that Olivia had about cancer. Here are pictures of Jack, Day 2 (sign made by Zoe, 9 yrs.) and the Finish. Thanks Jack, Pat, and Zoe for all the support!

Pan Mass Challenge

Good morning!

Sorry, it's me again. Olivia will be writing again soon, but she has been feeling a bit nauseous that last two days. She finished getting the first chemo of the 2nd cycle, and they say this drug is highest on the scale of causing nausea. So overall, she's doing quite well. We will be going home later this afternoon to start the two-week break.

In the meantime, I wanted to tell you about our friend Jack Murphy, who is riding in the Pan Mass Challenge. The PMC is a 190+ mile bike ride from Sturbridge to Provincetown to raise money for cancer research. Jack has ridden in this 5 times and was thinking of taking a break from it this year. When he heard about Olivia's diagnosis in June, he decided to go ahead with it. Since then he's been training in over 100 degree heat, thunderstorms, and has even gotten lost!

The PMC is this weekend and we will be cheering Jack on. If you see someone riding with "Olivia" on the back of his shirt, it's Jack!

Also if you are interested in helping him reach his fundraising goal, go to this link:

https://www.pmc.org/egifts/jm0280

Thanks and enjoy the rest of the week!

Post note: Just as I was about to press "publish," there was a knock on our door. Wally the Red Sox mascot came to visit, along with a few MLB umpires. Will post a picture when we get one!

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.

Hey guys, it's Olivia. I just wanted to thank everyone for the support. Also I just wanted to show you these pictures my mom took of me after I got the chemo. (Just kidding I have not gone for it yet but I will probably be so sick of it by the end I will look like this.) :) :P

P. S. Just want you guys to know my mom HATES these pictures and would never ever put them on a blog. (Hahaha but I would.)

Olivia

June 16, 2010

We called this Silver Linings because Olivia has so far found something positive in this experience every step of the way. We are determined to continue to do that. As most of you know, Olivia is bright, confident, and driven – and is not above using this situation to get what she wants. This first became apparent during the drive to Children’s Hospital for a bone biopsy.

Olivia: “So maybe since I’ll have to be laying around a lot, I can get that computer I want?”

Then later, “You know that ‘wish thing’?"

Mom: “You mean the Make-a-Wish Foundation?”

Olivia: “Yes, so if I have this (osteosarcoma), I’m going to meet Justin Bieber!”

June 21, 2010

The day of the biopsy was hopeful for Olivia. She thought she would fool everyone and that the doctors would find something totally different than expected. I hoped so too. We left the hospital with high spirits, met a group of NE Revolution players in the lobby and Olivia even got her picture taken with them!

Olivia had made it clear up front that she did not want to get news from “her team” (as she refers to the group of doctors at Dana Farber who will be coordinating her care). So when Chris and I returned a few days later from the biopsy results meeting without giving her the thumbs up, she knew it was not the news she had hoped for. She did not want to talk. It was not until later that evening when we were saying good-night that she opened up.

Olivia: “I just have one question. Will I lose my hair?”

As she sobbed over the reality of this, we talked about how we would get through it. A wig, I told her, could always have the hair style she liked (no puffy, dry hair!) and she could pull it back and do everything she wanted to do. This is still her biggest worry and fear, but in true Olivia form, she found the silver lining. “Hey, and when my hair grows back, it won’t be dry anymore!”

June 23, 2010

I just want to publicly thank our close friends, George and Elizabeth, who, despite supporting their own family in health struggles and being parents of four young children, have given us their full time and attention throughout this process. They have helped us navigate the system, given us access to the best medical advice (which includes their own), and been available to us 24/7. Guys, we are forever indebted to you. I hope you know how much we appreciate you and everything you do.

June 24, 2010

Hair loss continues to be Olivia’s biggest cause for upset. We continue to support her in her feelings but focus on the fact that it is temporary. She already has the support of others who have gone through a similar process (thanks to cousins Nicolas and Ann in France for making those connections!) and is getting tremendous support from her friends. (Who would have thought I would finally see some value in texting?!)

After a day of swimming and hanging out with Catherine and Peter, she came to me with tears streaming down her face.

“Mom, I told Catherine and Peter about my hair... and they were so supportive!”

This time her tears were those of great relief. Thanks Catherine and Peter!

June 25, 2010

Been creating and updating this blog while waiting at Children's Hospital for Olivia to have the "port cath" put into her chest, as well as having a biopsy of a spot they had found on her lung. The spot on the lung was tiny and so we wanted to wait for results before talking much about it. The surgeon just left and 1.) is confident that he got it all out, and 2) that it is benign. He also mentioned that pathology took an hour with it before he closed and is still not sure they can even find it. What they do have appears to be totally normal. Thank you Dr. Weldon. First good news we've had in weeks!!!!