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Thursday, October 16, 2008 6:43 PM CDT

Our thoughts and prayers are with the Savoie family, as their beautiful Maddie went to heaven this morning after a long and hard battle. Godspeed sweet Maddie.

Tuesday, September 30, 2008 8:50 PM EDT

Last time we were at Jimmy Fund our oncologist reminded me that I need to schedule an appointment to have Hunter's eyes checked out. The chemo and cranial radiation can mess up her vision and cause cataracts, so we need to monitor her there.

Today she had her eye appointment, which she seemed to think was the Funnest Thing Ever. She loved doing all the eye tests and reading the charts. The ophthalmologist was amazed at how at ease she was even though I wasn't in the room - apparently Hunter's had enough experience with Grownups In White Coats that a new doctor no longer phases her.

The good news is, no hint of any cataracts. The bad news is, she needs glasses. Not overly surprising since Mike and I have had glasses since we were very young, but still... just another thing... I was a little sad to hear that news.

Hunter, on the other hand, is SO EXCITED. She picked out her own frames and was actually MAD when she found out she wouldn't be walking out of there with her new glasses on TODAY.

She only really needs them for distance, but part of me is thinking it might just be easier for her to wear them all the time than to do the on/off thing and risk losing them... we'll have to see how she does with wearing them.

Anyway, here is the Huntress with the glasses she picked out:



(Seriously have you ever seen someone so happy about corrective lenses?! ;) )

Wednesday, September 24, 2008 9:47 PM EDT

Hayley donated 10" of hair to Locks of Love in Hunter's honor this afternoon. I was so proud of her!!

Just after having the ponytails cut:


10" of hair for some little girl out there. :)


Cute new short 'do!


We also got a call from the Dana Farber Running Programs office today and they've asked Hunter to be the DFCI patient to hold the finish line ribbon for the B.A.A. Half-Marathon next month. This is a big honor for her, and exciting for the running geek in me. :)

Congrats to Jake for getting de-ported today!

And Happy Birthday Matty... we miss you, buddy. Thanks for looking out for your mom this afternoon. :)

Tuesday, September 16, 2008 9:38 PM CDT

Hunter had her 3 month off-treatment checkup today. She went to school in the morning, then I picked her up and we headed in. On the way, we stopped at my friend Melissa's store, Decor And More, where we picked up a HUGELY generous donation that she made to the Jimmy Fund - 10 CASES of Webkinz. Seriously there was no room left in my car, it was FULL of Webkinz!

We got into clinic and after Hunter got checked in and had her blood drawn (3rd finger stick, still traumatic, ugh), Playroom Lisa came with us to the car to offload the plethora of Webkinz.

Most of the boxes went to Lisa's storage room for future use, but she pulled out one box and asked if Hunter wanted to give the Webkinz to all the kids. Hunter was ecstatic to be the Webkinz Fairy! She and her friend Michael (who finished chemo today - YEAH!!!) delivered them to every kid in clinic, including the teenagers. :)

We Have Webkinz!!!! Playing Santa in the playroom:


Hunter, Michael, and his sister Samantha heading out to deliver Webkinz to the kids in the infusion rooms:


Thanks again to Melissa, you made a lot of kids very, very happy today (and a lot of kids to come too!)

As far as the checkup - everything looks great, her counts are all perfect. I did have a momentary mild coronary when I was told that instead of seeing our usual NP, we'd be seen by the attending doc today. He walked in and must have seen my face because the first thing he said was, "Ann is on vacation - that is the ONLY reason you are seeing me today!" And then I was able to breathe again. (It's never good to unexpectedly be seeing the Big Guy... as nice as he is, we prefer to be the kind of patient that needs LESS attention from him, and not more!) ;)

Hunter's enjoying kindergarten so much... she comes home with a huge smile on her face every day, and she's usually awake and dressed and ready to go before I even go in to get her up in the morning. This whole 'normal' thing is hard to get used to... but the more of it we get, the more I like it. :)

Please keep Mary in your thoughts and prayers - she is still fighting hard.

Friday, August 29, 2008 7:43 PM CDT

Hayley and Hunter started school this week. Hayley - 3rd grade, Hunter - Kindergarten. They've both adjusted really well and are loving school. Hunter wasn't the least bit shy or nervous, and walked in to her classroom like she owned the place. :)

I love seeing Hunter come home in the afternoon and pull all of her work out of her backpack. She is so proud of herself. I wonder how long it will take me before I stop thinking all of the 'normal' stuff she does is absolutely amazing.

At school now, she is just another kid. She's not the kid who has to stay home for a week at a time because her counts are low. She's not the kid that runs funny because her legs are messed up from the Vincristine. She's not the kid whose parents need to be called when other kids get sick. She's not the bald kid. She's not the kid that's feeling so crummy she falls asleep on the 3 minute drive home after school. As special as she is, I love seeing her be 'not special' for a change, if that makes any sense.

Hayley and Hunter at home, getting ready to head out to school.


At school, very anxious for me to quit taking pictures and let her go IN, already!!


Taylor starts preschool in a couple of weeks. Sydney is now one, and walking and talking. My girls are growing up before my eyes, and I'm so very grateful for every precious minute of it.

Tuesday, August 19, 2008 6:19 PM EDT

We had clinic today and Hunter's counts looked perfect. I had been a little more worried than usual because she's been looking pale and has dark circles under her eyes lately, even after spending the whole day at the beach yesterday. She also had a couple of mystery bruises. And, last time we had been off treatment for 2 months, it didn't go so well. OK, I was a LOT more worried than usual. Had to talk myself off the edge more than a few times this week.

We're still not sure why she's looking pale, but all her counts are good, and her energy level is good, so I'm just going to start her on a daily multivitamin and keep an eye on her.

She starts school next week. We were very happy to find out that she'll have the same teacher Hayley had for kindie. Hunter is so excited to go!

A few pics of her boogie boarding at the beach yesterday. The waves weren't very big, but she managed to wipe out a few times. I think her favorite part of the day were the wipe outs actually. :)





And just because this picture cracks me up... :)



Friday, August 15, 2008 8:02 PM EDT

I still haven't gotten the full interview but Hunter is in this clip twice:

Jimmy Fund Radio Telethon

She's in the video, "Jimmy Fund Radio Telethon: Day 1". She's the first kid on the video and she's about 1:40 into the clip. :)

It cracks me up that she views having to see the doctor as a disturbance in her day at the Jimmy Fund. As far as she's concerned, it's all about the painting.

Thursday, August 14, 2008 4:55 PM EDT

OK so Hunter wasn't on the radio after all. They put her on TV instead! She did great.



The girls with Heidi Watley from NESN:


Fenway Park:


Sitting in the Ted Williams seat:


502 feet to home plate.


In front of the Ted Williams statue outside the ballpark:


It was a fun day and Hunter was excited to watch her new buddy Dave McGillivray on TV this afternoon as he finished his 54 mile run to Fenway Park. :)

Wednesday, August 13, 2008 2:05 PM CDT



Hunter and I are going to be interviewed on WEEI tomorrow as part of the annual Jimmy Fund Radio-Telethon. If you are in the Boston area, tune in to 850AM around 12:15PM. I think you can also listen live on WEEI's website (you have to register to hear the live feed).

She's funny - I asked her if she wanted to be interviewed on the radio last night and she said, "I would LOVE that!" Definitely not my shy kid anymore. :)

Friday, August 1, 2008 11:14 AM CDT

Last weekend was the Jimmy Fund Summer Festival. The girls had a great time as always. Watching Hunter run and bounce and climb and jump... it hit me hard how different this year was from years past. These pictures make me smile and make me teary at the same time. It's been such a long road for her.

Her first Summer Festival in 2004, just turned 2 and about 7 months into treatment - she was just a baby.


2005 and 3 years old with a headful of curls.


2006 - 4 years old and about 4 months after relapse. A little bit of hair still hanging in there.


2007 - 5 years old and just done with radiation and a month of steroids which left her very puffy and very bald.


And finally this year - a month off chemo and loving life.

Tuesday, July 22, 2008 4:10 PM CDT

Hunter had her first off-treatment visit to clinic this morning. Since she is now port-less, the blood draw had to be done by a finger stick. I knew she wasn't thrilled by the idea so before we left I actually put Emla on and wrapped two of her little fingers with Saran Wrap and tape.

Even with the Emla, she was NOT HAPPY about the finger stick. She's so weird - she actually prefers being stabbed in the chest with a large gauge hollow core needle to getting a little finger poke. If it weren't for the always-looming possibility of a line infection, I would have let her keep the port for a few more months.

After she recovered from the trauma of the blood draw, she decided to play Wii in the playroom. She was happily bowling when Lisa, the Child Life Specialist, brought in a guest - Dave McGillivray - the Race Director for the Boston Marathon. Hunter taught Dave how to use Wii, it was hilarious - every time he knocked down pins, she'd high five him and encourage him - "good one, Dave!"





Needless to say, as someone that's watched (or run) every Boston Marathon over the years since I can remember, the running geek in me was very excited to meet Dave and get an autographed copy of his book.

He was a super nice guy and he'll be continuing an annual tradition of celebrating his birthday by running his age in miles this year as part of the Jimmy Fund Red Sox Radio Telethon Fundraiser next month. He's running 54 miles, finishing at Fenway Park, where the telethon is broadcast from.

Back to Hunter - her counts today looked perfect - big sigh of relief from me! It was even a fairly quick visit. One of only a handful over the years where we didn't have to pay the maximum parking fee (which means we were there for less than 3 hours - faint!)

We're now looking forward to the Jimmy Fund Summer Festival this weekend - the girls are so excited!

As always, please keep Mary in your thoughts and prayers - they are still searching for a new trial for her.

Monday, July 14, 2008 8:55 PM CDT

We had Hunter's "No Mo' Chemo Luau" here on Saturday. The day was sunny and warm with a gentle breeze - absolutely perfect luau weather. It was a wonderful celebration with friends and family, filled with laughter and joy (and a few tears, but they were largely of the happy variety).

Three weeks off-treatment, Hunter has a higher energy level than ever, and there's a constant look of excitement in her eyes - like she's ready to do some catching up on all the fun she's missed over the last four and a half years. :)

Some photos of the 'luau' thanks to my friend Sarah.

The guest of honor:




Hunter, Taylor, Mary, Kira and Katie pig-piling on Renee (Kira's mom) in the bouncy house:


You think Hunter was having fun? ;)


Hunter and my little sister:


Hayley:


Taylor (love the face!):


And Sydney:


Lastly, we had a guessing game - each M&M in these two jars represents one dose of chemo or one med Hunter's taken during her treatment. This is what 4,389 doses of medicine looks like (and yes, I counted them all by hand):


And this is what 52 months of chemo looks like - a rose for every month:

(Thanks so much to my awesome group of mamas that arranged for this to be delivered along with a bunch of other goodies right after we got home on Hunter's last day of chemo.)

My final thought/request tonight is to please keep Mary in your thoughts and prayers.

Monday, June 30, 2008 9:51 PM EDT

Port out, scar revised. Hooray. :)

Tuesday, June 24, 2008 6:15 PM CDT

Done.

Monday, June 23, 2008 12:42 AM EDT

Friday, June 20, 2008 12:23 AM EDT

Hunter received her second to last dose of chemo on Tuesday. With each step closer to the end, my heart is full of hope and joy... and at the same time when I think about life without chemo I have to remind myself to breathe. As horrible as it is to put poison into my baby, the poison is the lesser evil when it comes to cancer. And the poison is what keeps the cancer away. Hate the poison, love the poison.

I actually had a discussion with her NP about whether we couldn't just keep her on some kind of lite chemo forever. Mostly joking but partly not. I am probably equal amounts joy and terror at the moment. I generally try to stuff the terror way down where I can't feel it and concentrate on the joy. But yeah, when it comes right down to it, I'm scared. Hunter - well she's just kind of mad that we will only have Jimmy Fund once a month from now on. Amazingly the chemo isn't even a drawback in her mind other than the fact that she has to sit in a bed for a few hours to get it when she'd much rather be out in the playroom.

As long as Hunter has her port we'll have to be on fever watch and whisk her into Children's if her fever is 38.5C. So I was hoping to get her port out as quickly as possible after she finishes treatment. Our NP Ann said she asked for them to schedule the surgery the first week of July. This afternoon I got a call from the hospital asking if we could come in on June 30. After a few deep breaths and many hurried second guesses, I said yes. So her port will come out on June 30, and all future blood draws will be by a finger stick. The thing is, she has no problem with having a large gauge needle shoved in her chest every week to access her port, but the one time we tried doing a finger stick, it wasn't pretty. I hope she'll adjust quickly.

Tomorrow is horseback riding... then the weekend... Monday Hunter turns 6... and then Tuesday... we finish - she finishes... she's more excited about the promised end-of-chemo stop at "We Have Webkinz" than about finishing chemo... I adore that kid.

She went for her kindergarten screening kicking and screaming last week. When she came out of the classroom, she was all smiles and excitement. She's starting to read now, I think kindie is going to be a lot of fun for her.

Oh, and she lost one of those crazy top front teeth of hers last week. And the other one is on it's way out - she enjoys freaking me out by putting her wiggly teeth horizontal and then closing her mouth and smiling with her snaggle-tooth hanging out. I'm sure she will be top front toothless within a day or two. I'm going to miss those Hunter teeth with the big gap between them.

Next update - should be our "No Mo' Chemo" update... (breathe...)

P.S.: Eat at Taco Bell! ;)

Monday, June 9, 2008 11:15 PM EDT

Hunter accompanied me on some errands today (she weirdly loves to go to Home Depot, Target, grocery shopping, etc.) I was sitting in line at the Dunkin' Donuts drive-thru to get my 2nd iced tea of the day, when the song, "No Air" by Jordin Sparks and Chris Brown came on the radio.

Hunter gleefully says, "hey, I know this song!" I asked her how she knew it and she said she'd heard it on the Disney Channel.

The funny thing is that in Hunter's world, the song isn't about "No Air". It's about "No Hair". She was singing along, "No hair, no hair..."

The kid cracks me up. A lot. :)

Thursday, June 5, 2008 8:27 PM CDT

We had Jimmy Fund on Tuesday where Hunter got her Vincristine and Cylophosphamide. Three more treatments to go.

The kid never ceases to amaze me, after getting those nasty poisons pumped into her, she came home and proceeded to play Wii Fit for an hour, during which time she soundly defeated her non-chemo-getting 7 year old sister at the head-to-head running game.

Yesterday, we were back in Boston to attend the Taco Bell Jimmy Fund Strike Out Cancer Fundraiser rally. If you know Hunter, you know that if she's not happy about something, she will clam up, fold her arms, and refuse to acknowledge your existence (a la her treatment of Wally the Red Sox mascot and Jerry Remy.) Well part of being the Taco Bell Cutie involves actually BEING cute - answering questions on stage, smiling for photos, and just generally not coming off as Cancer Brat.

We pass a shop on the way to Boston that for a long time had a sign outside saying, "We have Webkinz". Hunter knows it as the "We have Webkinz" store now. I don't know if I should be ashamed or proud at my genius for bribing the child with a Webkinz if she cooperated. She ended up doing REALLY well. Every time I thought she was about to take a turn to Pill-ville, I sang, "We have Webkinz!" into her ear and then she was all smiles again. She posed for photos with every Taco Bell manager there (and there were about 100 of them!)

So starting June 11 - if you're in New England or NY, please eat at Taco Bell and donate $1 to the Jimmy Fund while you're there! :)

Tuesday, May 27, 2008 8:59 PM EDT

Another LAST today, and it was a big one! This afternoon Hunter had her last visiting nurse appointment (and we were so happy it was our favorite nurse, Annmarie!) And then tonight I gloved up for the last time to inject poison into my baby's body. She has another week of oral chemo, and then we go to the Jimmy Fund four more times for IV chemo, and then 28 days from now, she will be DONE.

Celebrating another milestone tonight:


My friend Barbara pointed out how similar this photo was to this, from 2 1/2 years ago - her first 'last' dose of methotrexate (gosh she has grown up so much...):


But this time, it's her LAST LAST LAST dose of methotrexate. Really. (Please God, let it be her last....)

Friday, May 23, 2008 11:43 AM CDT

Things here are going well - I knew it had been a while since I'd updated but was surprised to see it's been a month! I guess that's a good indicator of HOW well things are going right now. And thanks Laurie for the kick in the pants to post! :)

It's been a busy month. Hunter finished preschool although she's still not so sure she wants to go to kindergarten next year. She'd stay in preschool forever if it were up to her. I know she'll come around over the summer. And Taylor is getting excited for her turn at preschool in the fall. She's got her backpack and she's READY.

Hunter is LOVING horseback riding - she counts down the days until her next lesson starting in the car on the way home from her last lesson. Since she likes it so much I finally caved and decided to buy her her own riding helmet, one that fits her little head perfectly. We had her fitted at the tack shop on Wednesday and when given a choice between pink and black - well is there really a question? She's the proud new owner of a pink and silver helmet - she loves it so much she wore it to bed that night and she either wears it or carries it with her in its fleece bag wherever she goes.


Last weekend Dr. Jason was up in Boston visiting friends and we got to have brunch with him, Shannon and baby Annabelle. Hunter was so excited to see them and was in a great mood all morning... until it was time to go. Stupidly, we always try to take pictures before we part ways, which is exactly when she gets grumpy.

Dr. Jason finally got her to come around though. :)

I thought Sydney was still little until we saw her next to Annabelle... and all of a sudden Sydney looked HUGE.

Speaking of the Stuntbaby, she's crawling, pulling up, and a few days ago I came around the corner to find her halfway upstairs! How is it that they all manage to grow up no matter how hard you try to keep them little forever? She's nine months old today.

Hayley had her first ballet recital, her class danced to a song from The Little Mermaid. It was adorable.

We're down to four weeks and 3 days until Hunter's last day of chemo. Next week will be her last visiting nurse appointment to draw labs. Then four weeks of chemo at the Jimmy Fund and she's done. It still feels surreal.

Last thing, my friend Lori is riding the Pan-Mass Challenge again for Hunter this year. She is raffling off a pair of Red Sox tickets as a fundraiser. Here is the info in case you'd like a raffle ticket: Red Sox Raffle The game is on Hunter's birthday and one day before she finishes chemo - how fitting is that? :)

Sunday, April 27, 2008 11:56 AM CDT

We've had a couple of big days here. For the longest time I've been encouraging Hunter to get into some sort of activity. She wasn't interested in ballet, gymnastics, swimming lessons, karate, summer camp - nothing. About 2 weeks ago we were driving past a horse farm on our way home from Jimmy Fund and she was so excited as always to see people out riding. Light finally dawned on me and I asked if she would like to take horseback riding lessons. I barely got the question out of my mouth before she was asking when she could start.

Her first lesson was on Friday and she LOVED it. She wasn't the least bit intimidated and she grinned the entire time she was there.

Meeting "Pepsi":




She even did a little light trotting, which had her laughing the entire time.


Yesterday Hayley made her First Communion.


And Sydney had her first piece of cake. Clearly, cake-eating is an exhausting business.


The end of the day:


Finally, this morning we had a little celebration as Hunter took her LAST dose of dexamethasone. No more steroids!! She's so speedy with her pill-taking that she managed to take all of them before I got the camera. So here she is washing down the last one. ;)


Watch for Oscar Meyer's profits to drop off as the bacon cravings begin to fizzle out.

Tuesday, April 22, 2008 8:22 PM EDT

Hunter had her *last* lumbar puncture today! Now we've had quite a few "last" LP's - last scheduled one the first time around; then one last one we added - just to be safe - when she had her port out - which ended up confirming her relapse; last one before radiation - until we decided to do 4 more during radiation; and I thought we were done then... until our attending onc said he wanted to do one at the beginning of each 10 week cycle. So really we are hoping and praying that this is truly the LAST last lumbar puncture.

She did great as usual - the hardest part of the day was when they brought all kinds of food and baked goodies into clinic because it's Sibling Week this week. For some reason they now let people eat in the playroom (used to be a huge taboo) and that's really, really tough on the kids that are NPO (can't eat) like Hunter was prior to her procedure. She wanted chocolate cake so badly and her sad little eyes about broke my heart when I had to tell her no. I ended up grabbing a piece of cake for her and wrapping it in a napkin. As soon as she woke up after her procedure, she sat bolt upright and said, "chocolate cake?" Chocolate cake in hand, and all was right with the world again. :)

I had all four of the girls with me today (and huge thanks to my mom who met us at clinic to help out!), and as we went into the parking garage they had me laughing so hard. Every time we went down a ramp to another level, I heard three little voices behind me, gleefully shouting, "wheeeee!" like they were on a roller coaster. I guess I should be grateful they are so easily amused?

One last funny thing (and really I sometimes just write this stuff for my own self so I have a way to remember it) but when the anesthesiologist was talking to Hunter, she asked, "how old are you?" Hunter's reply was, "Five and three pennies." It took me a second before I got it. She's actually five and three QUARTERS.

Monday, April 21, 2008 6:32 PM CDT
The last few days around here have been all about the Boston Marathon. More specifically, the Dana Farber Marathon Challenge.

Yesterday we went to the annual DFMC Pasta Party. Walking through the hall and seeing so many of our Jimmy Fund friends' smiling faces on their posters is always an emotional experience.

The girls and Hunter's Patient Partner poster:


Laurie (my friend and Hunter's running partner) and Hunter spent a day at the Jimmy Fund decorating her poster - this thing was covered in sparkles, jewels, glitter and all-out glamour! The artists:


Laurie was honored during the presentation, as this year marks her TENTH year on the DFMC team. We were so proud of her!

Watching the In Memory part of the presentation was hard as always, but seeing Matty's smiling face on the screen for the second year brought tears to my eyes (again) and made me so proud of Matty's mom and dad, Sandy and Johnny, for committing to run the marathon this year to raise funds for Dana Farber. Matty's brother Zachy was so funny, just as all of us were wiping away the tears, he started doing a dance in the aisle with his DFMC megaphone and pom-pom - and how could you not smile at that?

This morning we watched the start of the marathon on TV and then headed out to cheer on the DFMC runners. We arrived at Mile 25 just after the elite men went by.




We saw Lance Armstrong run by, and just 20 minutes behind Lance, there was Laurie!


Last year, at Mile 25, Laurie handed me a coin - on it was Hunter's name and a Guardian Angel. I have carried that coin with us for every appointment Hunter has had after that. Last night at the Pasta Party I gave Laurie the coin. She carried it with her again today and returned it to me at Mile 25. It meant so much to both of us, I'm not even sure I can describe why.

She posed for a photo with Hunter and then went on to set her new personal record of 3:18:37 - an amazing 7:35 pace for 26.2 miles!

We were thrilled to see our friends Mark, Berta, Sandy and Johnny, and Janet. Way to go guys, we are proud of all of you! :)

Oh, and Hunter's second favorite part of the whole day? Meeting Bruno.


Tomorrow we go to clinic for Hunter's LAST scheduled lumbar puncture, and we start her LAST round of steroids. Two pounds of bacon is in the fridge and ready to go...

Oh, and CONGRATULATIONS to Aimee for getting that elusive Boston qualifying time! Perhaps I'll take that DFMC bib number off your hands next year... ;)

Wednesday, April 9, 2008 10:44 AM EDT

Clinic yesterday went well. I think I forgot to mention that Hunter is having leg pains thanks to the Vincristine - we are trying to keep her at 100 percent of all her chemo since we are in the home stretch, and last week we were able to control her pain with a dose of Oxycodone once a day for 3 or 4 days. I'm not thrilled at pumping opiates into my baby, but the opiates allow us to pump more poison in, so it's all good, right? She got 100 percent of her Vincristine again yesterday and has one more dose this cycle before she gets a 6 week break from that particular vile poison.

Even with the leg pain, she managed to run and play at our friend Brenna's gymnastics party on Sunday. It was probably actually good therapy for her. Check out her awesome Lilo & Stitch outfit my friend Janet (Coleman's mom from clinic) made for her:


Everyone at clinic was dressed in their Red Sox finest in honor of Opening Day at Fenway Park yesterday. We weren't quite close enough to smell the snausages and hear the crowd roar like I was when I lived in the Fenway, but we did hear the military jets fly overhead - which was pretty cool. Traffic in and out of town though - not so cool.

One kind of funny thing - I learned yesterday that in the Dana Farber gift shop, I'm known as "the lady with all the kids."

On a much more serious note, please keep our little buddy Mary in your thoughts and prayers - she's being admitted today for some major surgery tomorrow morning. If you could have seen Mary run around with all the other kids on Sunday, you'd never believe she's got a belly full of cancer.

Tuesday, April 1, 2008 9:44 PM EDT

We had clinic today and we've now officially got just 12 weeks left of treatment! (OK it's not "we", it's "she" - you see how I make this all about me? Good right? You like that?)

Anyway, chemo was pretty much uneventful. We had some visitors which was fun. Suzanne, the liason at Dana Farber for the Taco Bell fundraiser, came to visit and meet Hunter. She asked how old the girls were, and then asked when Taylor would be four. Hunter answered, "on her birthday." (Seriously, I think she thinks grownups are sometimes just so dumb...)

Suzanne also brought the girls pink Red Sox baseball hats, which they loved. On the way home, Hunter announced, "My hat has a B on it. B for Busy."

I said, "well yes, busy does begin with B, but that B is for Boston - it's a Red Sox hat."

She replied, "B for Busy. Busy kicking cancer's BUTT! B is for Butt too." (Hysterical giggles and more "B is for Butt" followed.)

I nearly drove off the road trying to stifle my laughing. I don't know if I'll ever be able to look at a Red Sox hat again without thinking, "B is for Butt."

Friday, March 28, 2008 9:46 PM CDT

October 2003, I ran my first marathon. It was one of those things I wanted to do, so I could cross it off of my list of 'things to accomplish before I die'. 26.2 miles in the books. Done. Next?

I really hadn't planned on ever running another marathon. (Then again, I really hadn't planned on having my baby diagnosed with cancer two months later either.)

My friend Laurie changed my mind on all of that. She's been running the Boston Marathon and raising money for Dana Farber for 10 years, and 2 years ago, she convinced me and my brother Jon that we needed to run Boston with the Dana Farber Marathon Challenge team. I did end up running, and raised nearly $12,000 for cancer research.

Those of you that have been following Hunter for a while will know what happened 2 years ago. After training for 6 long months, I found out the week before our last group training run that Hunter had relapsed. I ran Boston for Hunter - and then the day after, we checked in to Children's Hospital for her first round of inpatient relapse chemo.

Last year, I was 5 months pregnant with Sydney and unable to run again. Laurie asked if she could be Hunter's Patient Partner and we were thrilled to say YES! Laurie is running for Hunter again this year, and her recent blog entry about Hunter had me laughing and crying. Please go check it out here: TwentySixPointTwoManyMiles.

Thank you to the DFMC and especially Laurie - as the Jimmy Fund saying goes, "it takes more than courage to beat cancer."

If you are so inclined, Laurie's fundraising page is here.

Please keep Mary and Christina in your thoughts and prayers.

Tuesday, March 25, 2008 6:30 AM CDT

A year ago today, I met up with my Cool Cancer Mom friends for lunch. We met in NH because Matty was very sick and his mom Sandy wanted to be close by. She left lunch early because the Easter Bunny was going to be visiting the boys that afternoon. Matty became an angel that night.

This has been a long year full of difficult 'firsts' for his family, and I'm sure this first anniversary of Matty going to heaven will be be one of the hardest.

Sandy, Johnny, Chris and Zachy, we are thinking of you and your angel Matty today. We love you guys.

Sunday, March 23, 2008 8:23 PM EDT

Happy Easter everyone, and welcome to the world little Annabelle Miriam! :)

Thursday, March 20, 2008 11:46 AM EDT

Two years ago today I sat with Hunter at Children's, quietly celebrating with her after she got her port removed, thinking we'd shut the door on our long journey with cancer for good. While she was under the anesthesia, Dr. Jason did an end-of-treatment bone marrow aspiration and lumbar puncture, just to make certain everything was clear.

March 20, 2006:

(Seriously - didn't she look too healthy to have cancer AGAIN?)

As we walked in the door at home that evening, the phone rang. It was Dr. Jason, calling to let us know there was leukemia in her spinal fluid, and suddenly we were right back in it, fighting for Hunter's life.

We were back at clinic the next day and when I saw the relapse protocol on paper, my heart dropped into my shoes. This was some seriously harsh chemo - and oh yeah, how about a little cranial radiation thrown in as well? Those first days after relapse were some really hard, sad, scary, horrible days. Kissed by a Dementor days.

It's hard to believe that it's been two whole years. She's come so far, in so many ways. Just 14 weeks of chemo left before she is done, God willing, with that nastiness forever.

We're just finishing up her five weeks of chemo at home and we go back to the Jimmy Fund next week. She's been asked to be the Taco Bell cutie for their summer Jimmy Fund fundraiser, and they'll be taking her pictures that day for the promotional material. Since her hair was looking a little shaggy, I decided that she should get a trim. Her very first haircut ever! (I'm not counting when I had to cut it because it was falling out and was making her itch.) She looks so cute with her new Mia Farrow 'do, and the hairdresser even put a little clippy in it for her.



Afterwards we went next door to the chocolate factory and Hayley and Hunter each picked out a treat. Nothing says "happy kid" like a big chocolate soccer ball lollipop smile!



Thank you for checking in on us, and please keep Mary and Matty's families in your thoughts and prayers. They're both dealing with some big stuff right now.

Saturday, February 16, 2008 6:54 PM EST

Steroids Day 4. Just cooked up the fourth pound of bacon this week. The Baconater is eating it for breakfast, lunch, snack and dinner.

Every time I watch the video above of Jim Gaffigan, I laugh harder. Especially at the part where he says he wants to lay down and eat bacon all day. Because that's literally what Hunter's been doing. Sitting on the couch with a pile of bacon next to her.

Done with steroids tomorrow morning. And maybe my house and everything in it will finally stop smelling like cured meat. ;)

Thursday, February 14, 2008 1:55 PM EST

Tuesday was another clinic day - Hunter got a lumbar puncture. If all goes well, she will only have to have one more - EVER! She handled it like a champ as always and started demanding chicken nuggets before the anesthesia even wore off.

Her IgG level from last week came back at 100 (normal is more like 400) so it's a very good thing she got the Gammaglobulin when she did - definitely worth the long day at clinic!

She started another cycle of steroids Tuesday night. Yesterday when I picked her up from school, her first words to me were, "I'm hungry, will you make me bacon?" In the two hours after she got home from school, she ate an ENTIRE PACKAGE of bacon, two Valentine's cookies, a brownie, an apple, a green banana (I tried to tell her it wasn't ripe but she didn't care - MUST HAVE BANANA), and a whole bag of microwave popcorn.

When she finished, she proceeded to demand that I go outside and plant the popcorn seeds so we could grow corn in our yard. She was hopping mad at me when I explained that since we were having torrential downpours and there was 4" of snow/slush on the ground, I did not particularly want to go gardening.

Steroids are so fun.

On Sunday, we went to a book signing by a local author, Deirdre Carey. She wrote a book called, Hope, Faith and Charlie, about her son, a brain tumor survivor. When we met her, I introduced Hunter and Deirdre knew who she was! She said, "Hunter, you're famous!" Hunter's response? "I know."

Please keep Mary in your thoughts and prayers. They have gotten more bad news this week. The study drug didn't stop her cancer. She starts another new trial next week. This needs to be Mary's miracle.

Tuesday, February 5, 2008 7:08 PM CST
Another LOOONG day at the Jimmy Fund and Hunter has officially completed week 30 of Maintenance - 20 weeks to go!

Her cough was still lingering after all the other girls had kicked theirs, so I asked our NP to test Hunter's IgG levels, and she ended up getting 2 hours of Gammaglobulin after her chemo tonight. We left the house at 8:30 AM and didn't get home until 6:30 PM (just in time to feed the girls and run back out to vote!), but hopefully the Gamma infusion was worthwhile and she will be able to kick this cough and fight off any other winter junk that's going around.

We had some fun at clinic though - I had to bring all 4 girls today - and our Cool Cancer Friends Kim, Mark, Jake and Brenna were there. At one point, we had all of my girls, Brenna, me, Kim, Playroom Lisa, and Hunter's social worker Deb, all gathered around our corner of the infusion room, laughing up a storm. A Girl Party!!

Hayley hadn't been to clinic since Hunter's last radiation treatment last summer - I think it's good and important for both her and Hunter to have that time together.

Last night I went to school and registered Hunter for Kindergarten. While that probably doesn't sound like a big deal, for her - well, it kind of is. :) I had a really nice surprise as well when the school nurse said that she not only knew of Hunter, but that she also follows Hunter's Caringbridge site! ()

So we've got 2 10-week cycles of chemo left. Next week she gets a lumbar puncture - again, she's excited to get 'sleepy medicine'. Little goof. :)

Congratulations to fellow Cool Cancer Kid Kira - she was de-ported this week! That's a huge milestone for many reasons. We're proud of you Kira!

Thursday, January 24, 2008 12:26 PM EST

A big Welcome Home to Matty's dad, Johnny, back from Iraq after 4 1/2 long months! We are so happy you are home safe and sound.

Tuesday, January 22, 2008, 4:07 PM EST
SCREEECH!! So much for chugging along... we went to clinic today and Hunter is severely neutropenic and not able to get chemo this week. I'm not too brokenhearted about that, especially considering she's been complaining about leg pain that's "making me walk on my toes" which is likely being caused by the Vincristine she is getting during this part of her cycle. So we got sent home early with rx for Azithromycin in hand for her coughing.

Hunter is not so thrilled though as severely neutropenic = no school for her this week. Poor kid has been out for a six week holiday break and was healthy the entire time. Now that school is starting up again tomorrow, she's sick and neutropenic.

And just to add insult to injury, before we left clinic I ran next door and got her a Happy Meal. She was so excited because the toy right now is supposed to be a mini Rescue Pet. Well for some reason, they gave her a Strawberry Shortcake doll instead - when she saw it, she burst into tears. No school and no Rescue Pet was just too much for her to handle today. :(

I did promise her that since we're on house arrest this week that I will take her to the McDonald's drive thru one day and we'll make sure she gets a Rescue Pet this time. That, and renting a new Wii game to play while she's stuck at home, and all is right in Hunter World again. If only all of life's disappointments could be rectified so easily.

Sunday, January 20, 2008 8:21 PM EST

Things are chugging along here - we had a scare a few days ago when Hunter spent the day on the couch with a low-grade fever, complaining of headaches, nausea, and generally acting overly emotional. Same kind of stuff she complained of just prior to her relapse. Needless to say, I had to talk myself off of the edge quite a few times - "probably just a virus... probably just a virus..."

Dare I say that when she (and the rest of them) all woke up with coughs the next day, I was actually grateful? Not happy that they are all sick, but it's such a relief to know that it really IS just a virus.

Other than the coughing, things are generally good here. We are in the countdown - 23 weeks until the end of treatment. I'm both thrilled and terrified by the prospect of NO MO CHEMO.

Last week when we were in at clinic, the Red Sox rookies came to visit. This has become my annual "I'm so old" reality check as most of these kids were BORN when I was graduating high school! Hunter really hit it off with Justin Masterson, who is just the nicest guy ever. She told him, "I hate the Yankees!" (despite her Daddy's attempts at bringing them to the Dark Side) and Justin gave her a big high five. :)

That's about all the news - please continue to keep Mary in your thoughts and prayers. And GO PATRIOTS!!! 18-0 baby... :)

Wednesday, January 9, 2008 9:20 PM EST

Now that I have my 2008 calendar I sat down with Hunter's chemo schedule and started to plug in dates for everything. When I got to the end of her schedule I realized I made a very happy mistake. I'd thought she would finish up on July 8. Actually, she will finish chemo on June 24 - one day after her 6th birthday!

She spent her 5th birthday in the middle of cranial radiation - I like this birthday plan much, much better. :)

In other news, Sydney is now rolling both ways, all over the family room. My baby is mobile. Gone are the days I could put her down and come back to find her where I left her!

Hunter, Sydney and Taylor, "being mermaids" together, just after Sydney rolled from back to belly for the first time yesterday (and no, The Sydster is not flipping you all the bird, if you look closely, you'll see that she's actually flashing a peace sign...)


I think they're talking about me already...


Thank you for thinking of our little buddy Mary. Her parents have found another clinical trial they are trying to get her into, please hope, pray, think good thoughts, etc. that she will get in and that it will be her miracle. We need her to be here with us for much longer than 5 years.

Thursday, January 3, 2008 7:54 PM CST

Tonight I need to ask for prayers for a miracle. My friend Kristina found out this afternoon that Mary's AFP has gone way up again. The chemo she's been on didn't touch her cancer. She'd been on a clinical trial, because they've already run out of standard treatment options. They are hoping to find another trial that will take Mary on. There is nothing out there specifically for hepatoblastoma. NOTHING.

To say I am devastated doesn't even begin to cover my feelings on this. I am angry, that there isn't a cure. I am scared, for what Mary's future holds. I am sad, because I love that little girl. I feel helpless, because I love her mom and I know this news has absolutely crushed her and Mary's dad, and there's not a single thing I can do to fix things. I feel sick, thinking that Mary's little sister Katie might not have her big sister around to grow up with.

Please, please hope, pray, think good thoughts, whatever it is you do, please do it for Mary. She only just turned five. She has a lot of living yet to do.

Monday, December 31, 2007 10:28 AM CST

This morning I woke up at 7:55 AM. It took me a few seconds to realize that three years ago, to the minute, we were welcoming this little princess into the world.

(Taylor, not Sleeping Beauty.)


Happy Birthday, my sweet girl!

We had a really nice Christmas. The girls opened gifts from Hunter's Christmas Cancer Warrior on Christmas Eve. (Thank you Tonicia!)


They sprinkled reindeer food (aka oatmeal and glitter) outside in the snow just before bed.


Christmas morning, waiting to go downstairs and see if Santa came.


(He did.)


Funniest gift - from Uncle Matt and Kate:


And my Bitty Baby's First Christmas - yes, I put her in yet another ridiculous getup.


We wish you all a peaceful, happy, HEALTHY New Year!

Thursday, December 20, 2007 8:47 AM CST

Four years ago today, we sat in a little room in the ER at Children's Hospital. I was holding a frightened and very sick toddler. Dr. Jason came in, sat down, and gave us the news that would change us forever. Hunter had cancer.

Looking back it is hard to remember the days when chemo and hospitals and little bald heads were not a very familiar part of our lives. We live in a different world now - one that is more painful, more heartbreaking, and where the colossal unfairness of the whole thing hits you over the head on a regular basis.

But in this world of ours there is also incredible bravery, joy, love, and an irrepressible passion for life. We have met some amazing kids and parents and doctors and nurses along the way, and for that, I will always be grateful.

I'm thankful too for how well Hunter is doing these days. Last year on December 20, we were inpatient for high dose methotrexate. This year, she's begging me to go outside and play in the fresh blanket of snow that fell overnight.

They did get to play outside a few days ago in the 2 feet of snow we already had.

The snow is so deep, Mike was tossing them in the air and they'd land in a soft pile. Here's Taylor, mid-flight:


And the landing (she's standing up, by the way!)


Hunter's turn:


Yes, she's come a long way. Seeing her with a smile like this, playing in the snow with all her might, well, I really couldn't be more proud.


Happy Holidays!

Wednesday, December 5, 2007 8:04 PM EST

Hunter had a lumbar puncture yesterday - as usual, she did just great, and the first look at her spinal fluid looked perfect (yes, I still get very nervous until I hear the all-clear!)

Since she usually handles the LP's so well, she tends to want to jump off the table and run around as usual - but when she does, she gets very punky and has been known to vomit. So we hang out for an hour or two in one of the infusion room beds before we go home.

This week she was MAD because someone else was in the bed across from us, which meant her new friend Caroline couldn't sit there. Hunter and Caroline were giggling so much together last week, it had her mom and I wondering if there was some happy juice in the chemo that day! Here both of these little girls were, getting poison pumped into their bloodstreams, and you would have thought they were at a party. :)

She started 5 days of steroids again tonight - we used to dread steroid weeks when she was on her frontline treatment, but now that we've lived through multiple occasions of 28 straight days of 'roids, 5 days feels like no big deal.

I break all of her pills and put them into gelcaps. Tonight she took 6 gelcaps of dexamethasone and 3 gelcaps of bactrim in about 30 seconds. She's very proud of her speedy pill-taking ability.

Laurie's mom sent me the copy of the paper Hunter was in and I was surprised to see that not only was her picture in the paper, it was HUGE and it was on the front page! The funny thing was, I showed Hunter, and she was completely unimpressed. I really don't think she gets that not everyone gets their picture in the paper every now and then the way that she does.

(My scanner is being uncooperative lately.)


(And go figure, this beautiful picture was probably being taken at the exact same time as the doofy family photo I was whining about earlier. More proof I should probably just keep my big mouth shut.)

And just because I thought it was funny - Taylor apparently thought Sydney was lonely yesterday. So she brought Bitty Baby over to visit. I had to do a double take to figure out which one was my child! ;)


And again, please keep Mary in your thoughts and prayers. They had a really sucky meeting with Mary's docs today.

Monday, December 3, 2007 7:28 PM EST

We went out and got a copy of the Metrowest Daily News this afternoon and I was disappointed to see that Hunter's picture wasn't in there.

But look what my friend Laurie's mom found tonight!

Jimmy Fund Christmas Party story

(Thanks Laurie and Mrs. N!)

Sunday, December 2, 2007 4:55 PM CST

The girls had a great time at the annual Jimmy Fund Winter Festival yesterday. (One of the many events we missed because Hunter was inpatient last year.) It was nice to see lots of the families we've become close to over the years - sometimes the Jimmy Fund parties are our only chance to catch up in person. They really go all out for this festival - even the parents got Dunkin Donuts coffee and Bose headphones this year.

The girls weren't too thrilled about meeting Santa (though they gladly accepted the gifts the elves [first year fellows] handed them.) Thank you Renee for taking these - I brought my camera and managed to snap exactly TWO photos all afternoon! Bad mommy...

(That reminds me, Hunter had her picture taken by a photographer, it's supposed to be in the Metrowest Daily News tomorrow I think.) :)

Goofiest family photo EVER (seriously, WHAT is going on here?):


Hunter doing crafts at our table:


And Sydney peeking over Kerry's mom's shoulder:


It was really cold and windy, so Mike got the car and picked us up at the door as we were leaving. While we were waiting for him, a woman asked us if we had been to a birthday party. When I told her that it was the winter party for the Jimmy Fund, she looked at me, incredulous, and said, "you mean, some of these children have - medical issues?" I told her, "some of these children have - cancer." Then we both looked at the dozens of smiling, excited kids coming from the party; some skipping down the hall, some in wheelchairs; some little bald heads among them. And it really hit me, how great it was to see our kids get to be just... kids. They really are amazing.

One of the moms I ran into yesterday mentioned that I haven't really updated on Hunter's health in a while. How embarrassing! Well I guess you can guess that no news is good news. She's been feeling really good, she's been making it to school every day, she has HAIR!!

Tuesday we start her third of five 10 week cycles in Maintenance - which means she's only (!) got 30 weeks of chemo left. She'll be getting a lumbar puncture ("sleepy medicine, yay!") and we'll start 5 days of steroids. She actually LIKES taking pills now so she's thrilled to be starting dex again. Cute but weird.

Please keep our little buddy Mary in your thoughts and prayers. Her AFP is up again and her docs are meeting on Tuesday to figure out a new game plan.

Thursday, November 29, 2007 9:04 AM EST

My heart is so heavy this morning. Two more little angels are in heaven this week. Alexia, the Princess Warrior, earned her wings last night. She fought so well and so hard, for three long years. Her spirit was much bigger and stronger than her little body could ever be. Ursula, Ignacio and Sofia, our thoughts and prayers are with you.

Little Abigail from clinic passed away on Monday night. She was such a sweet, smart, happy little girl. We'll miss seeing her beautiful little face. Rachel and Abraham, you are in our thoughts and prayers as well.

Monday, November 26, 2007 7:02 AM CST
Please keep our friend Alexia in your thoughts and prayers. After years of fighting, and despite being miraculously leukemia-free, her little body is beginning to fail. Our hearts are broken and we are hoping for a miracle.

Thursday, November 22, 2007 8:25 PM CST

Thanksgiving... seems like Thanksgiving is one of those holidays that either lifts us up or kicks us in the butt every year.

Thanksgiving 2003 - Hunter was 17 months old and she woke up that morning with a low-grade fever and puffy eyes. We gave her Tylenol and Benadryl. Three weeks of low-grade fevers and multiple visits to the pediatrician later, we brought her to the ER at Children's Hospital, where she was diagnosed with cancer.

Thanksgiving 2004 - We were through the worst of her chemo (or so we thought), I was 8 months pregnant with Taylor, and we were riding the happy wave.

Thanksgiving 2005 - We'd just come back from Hunter's Make-A-Wish trip to Disney, thinking we only had two months of chemo left. A week later we found out they'd found some 'funny' cells in her spinal fluid. We spent Thanksgiving in limbo, waiting for a follow-up lumbar puncture, hoping and praying that the next one would be clear.

Thanksgiving 2006 - Well, she relapsed officially in March. And we spent Thanksgiving in the hospital while she got high dose Ara-C. Turkey with a side of chemo - what kind of lousy menu is that?

Thanksgiving 2007 - I'm hoping that the happy wave is back for good. Hunter has been doing well lately. She's only missed one day of school all year, which is HUGE for her. She lost not one, but TWO teeth last week. Her first two teeth, I might add. She's very proud and will show anyone and everyone that crosses her path.

I am thankful for so many things this year - for finally getting to Maintenance and making it there with no major complications. For not having been inpatient in over 4 months now. For no somnolence syndrome. For good counts lately. For 'only' 31 weeks of chemo to go and finally a light at the end of the tunnel. For hair!

For Sydney, the Sweetness, who wasn't even on the radar screen this time last year. For Hayley, who shares my love of shows like Project Runway and America's Next Top Model - and who plans on starring on (and winning, of course) BOTH shows in 15 years. For Hunter, and the smile that can turn my day around, and for the random, "Mommy? I love you's". For Taylor, and her hilarious, devious, mischievous ways. For Mike, my best friend. For my mom, who is my rock, my friend, and an awesome Grandma. For my mother and father-in-law, for being there for us, even when you can't be here with us. For our family and friends, who spoil my girls rotten.

For my Cool Cancer Mom friends - Sandy, Kristina, Renee, Kerry, Kim - I love you guys. For my August 2000 mom friends, what would I do without you all? For our Franklin friends - you know who you are - you've been there with meals and gifts and rides and love, and it means more than you know. For Dennis, Lori, Jon, Matt, and Laurie - who have dedicated so much time and effort to raising money and training for the PMC and the Boston Marathon. For all the Jimmy Fund and ALL-Kids moms and dads we've become friends with over the years. For Jeanne, because you are my BFF and have been since 7th grade.

For our Children's Hospital and Jimmy Fund doctors and nurses, who put up with my endless questioning of everything, and for caring so much about Hunter. For Webkinz, they entertain the girls (and me) and they're a really good bribe when necessary. For Robeez, the only way to keep socks on an infant determined on kicking them off. For the kindness of former strangers that have become a part of our lives. For washable magic markers. For Hunter's teachers, who she adores. For turkey dinners that someone else makes for us (even if Hunter and Taylor opt to have Cheerios instead). For reality TV and the shameless, ridiculous schadenfruede it provides. For being able to Christmas shop online. For the glitter that is permanently embedded into the carpet in my car - because it means the girls were having fun doing crafts at Jimmy Fund that day.

And as always, for all the little boo-boos that can still be healed with a kiss.

Happy Thanksgiving. :)