Wednesday, October 31, 2007 7:09 PM EDT

Happy Halloween!

Mike, Elmo, Barbie with Patriots Sweatshirt (?), Pumpkin and Sabrina from The Cheetah Girls (apparently Sabrina has recovered well from the Dancing With The Stars debacle last night... but I digress):


And my little Pumpkin again (wondering why she was woken up to be changed into this ridiculous getup):


Tuesday, October 30, 2007 7:56 PM EDT

We got counts done here at home today - for the first time in 16 weeks of Maintenance, she's too low to get chemo. Just barely too low, but she gets a week off just the same.

Happily, unlike the other phases of her treatment, we get to just skip this week, and her treatment doesn't get pushed back. We've already had so many delays, stretching the 2 years of her relapse chemo to 2 years 4 months (on top of the 2 years and 1 month of frontline treatment). Enough already!

I got this message passed along to me from CureSearch, and since I know there are people from all over that follow Hunter's site, I thought I'd post it here.

***
The Conquer Childhood Cancer Act S 911 is moving forward in the Senate. We
need your help today to keep the momentum to successful passage of this
bill. The bill is scheduled to be 'marked up' by the Senate Health,
Education Labor and Pensions (HELP) Committee on November 7th. This is an
important step on the path to success. Today, we are reaching out to the
cancer community in the following list of 11 states:

Iowa (Senator Harkin), Washington (Senator Murray), Illinois (Senator
Obama), Wyoming (Senator Enzi), New Hampshire (Senator Judd), Tennessee
(Senator Alexander), Alaska (Senator Murkowski), Utah (Senator Hatch),
Kansas (Senator Roberts), Colorado (Senator Allard), and Oklahoma (Senator
Coburn). The Senators in these states serve on the HELP Committee but have
not signed on as co sponsors of this bill yet.

These 11 Members are key to our shared success for children with cancer on
Nov. 7th.

They need to hear from constituents that their support of this bill is
important to you and all the children and families in their state who have
ever had a diagnosis of cancer. If you live in one of the states listed
above please take he following steps:

* Call the US Capitol Switchboard at 202-224-3121
* Ask for your Senator's office
* Ask to speak with the person in charge of Health Issues for the
Senator - if not available to leave a voice mail with this person.
* "I understand the Conquer Childhood Cancer Act - S. 911 will be
marked up on Nov. 7th by the Senate HELP Committee. Please know this bill
is important to me because ---.
* Thank you. Your name and the city and town where you live.

PLEASE CALL TODAY 202 224 3121
***

Please do what you can. You can still email your Senator through the CureSearch website as well.

There was yet another angel from our clinic that earned her wings yesterday. Our kids deserve the chance to grow up. They deserve to have this bill passed to fund research.

As my friend Alicia says, "One child lost is too many... One child saved can change the world."

Sunday, October 28, 2007 8:28 PM CDT


I'm trying to decide where to even begin this update. Two weeks ago, my friend Gina was in town from TX while visiting her friend Paula. Gina and Paula are both professional photographers and Paula took that photo of Hayley and Hunter dancing on the millstone above.

Paula was kind enough to offer to take another set of photos of the girls, and we met up with Gina and Paula and some of their photographer friends. The photos came out beautifully, especially this one of Hunter:



It turned out to be a very good thing that we did photos when we did - as 4 days later, Hunter decided that Taylor needed a haircut. She chopped off about 5" on one side, and gave Taylor bangs. This was Taylor's first haircut ever - not exactly how I pictured it happening!!

Taylor before:



Taylor after I had to give her a chin-length bob:



She does look cute with her new 'do, but I confess I was in tears the entire time I was cutting. I think because of Hunter's hair issues, I might be a little overly sensitive about the whole haircut deal with the rest of my kids.

Friday night my friend Kristina (Mary's mom) and I went to Jessie's wake. Jessie's mom had asked people to fold paper cranes in memory of Jessie. She was hoping to get 1,000 as in the story. I think she got closer to 10,000. That funeral home was bursting with cranes of all colors and sizes. It was beautiful.

Our contribution:



Today Hunter went to her first ever school-friend birthday party. She was so very excited. She was a little shy when we first got there but she ended up having a ball - she bowled and then went to the arcade where she hit the jackpot with one of the games and earned a bajillion tickets that she turned in for: a pink rabbit's foot (ew!), a pink pop-up ball, a pink rubber monster finger puppet, and a tiny gold padlock. You would have thought she'd won a shopping spree at Tiffany, she was so excited!

Last year she didn't even go to school enough to get to know any of the kids very well - so seeing her at her first school-friend party was very emotional for me. I love seeing her do normal, happy, kid stuff. Who knew - bowling with my 5 year old would bring me to tears? Thanks so much Bretton, and Happy Birthday!!

Thank you to everyone that watched the video I posted last month, and thanks especially to those of you that went to CureSearch and wrote letters to your Senators and State Reps asking them to support the Conquer Childhood Cancer Act. Senator Kennedy signed on here in MA last month, which means both of our Senators and my State Rep are now backing the bill. Here is an excerpt of an email sent to my ALL-Kids group by one of the creators of the video:

"Kate Shaffer,a director at CureSearch, stated there were over 4,500 email
letters from their site to Congress this September, urging them to pass the
Conquer Childhood Cancer Act. This blew the doors off last September's tally
of around 500.

The difference? She gave credit to the video! Over 1,000 emails were sent
the day AFTER our video came out.

The result of these emails? NINE additional congressmen and women signed on
to support the bill after the video was put out.

They feel the bill has a real chance of being voted on this year and
hopefully voted into law."

It feels good to have our voices heard. Our kids deserve that much.

I guess that's about it - other than GO SOX!! and while I'm at it, GO PATRIOTS!! And we are very proud that Jon Lester, the pitcher for the Sox tonight - is also a cancer survivor who is treated at Dana Farber like Hunter.

It's a fun time to be a New Englander right now. :)

Saturday, October 20, 2007 7:58 PM CDT

I have a big long update to post but I'm putting it on hold tonight. The short version is that our family is all doing well.

The reason I just can't post one big happy update is because I found out this morning that our friend Jessie went to heaven yesterday.

Jessie fought for 6 long years, through two relapses and a bone marrow transplant; and she died very unexpectedly during surgery. Her family never even got to say goodbye.

This was a little girl with an unforgettable smile, and an amazing attitude. Her mom, Gail, is a gentle soul, someone that has quietly supported so many other parents she's met on this journey. Our little clinic family has been shaken to the core by Jessie's passing.

So while we are counting our blessings, we are doing so with a very heavy heart tonight.

Friday, October 5, 2007 9:27 PM EDT

I went to get my hair trimmed this afternoon and out of curiosity asked my hair stylist to measure my hair to see if it was long enough to donate to Locks of Love (it has to be 10").

He measured, and when he told me that I could donate 11" and have my hair chin-length, I told him to do it. And then I closed my eyes until it was over. :)

My hair is ridiculously thick and that braid of hair he cut off felt like it weighed about as much as Sydney.

So I am now the proud owner of a new, chin-length bob. And some little bald girl will soon be walking around with the hair I'd been growing out for the last 3 years.

The funny thing is that Hunter totally doesn't get why anyone would want a wig. She loves her new hair (all 1/8" of it) but she loves her little bald head too. I hope she always feels that confident with herself. :)

Thursday, October 4, 2007 10:39 PM EDT

Hunter's LP last week went just fine - she is such a trooper. She felt a little crummy for the rest of the week, but never once complained. She made it to school every day (hasn't missed a day since school started!!) but was very tired once she came home.

I realized I never posted pics of her first day of school. She has these LOVELY metallic pink cowboy boots that she adores and that she wears nearly every day. One of her classmates calls her, "Hunter Boots". :) (And yes, her backpack is nearly as big as she is - I ordered it online - I had no idea!)





Her hair is really starting to come in now, she's got a ton of peach fuzz, and she's very excited about it.

We went to our friend Kira's birthday party on Saturday. Hunter wasn't feeling great and napped through much of it, but while she was awake, she and the girls had so much fun! All of my Cool Cancer Mom friends were there so it was fun for me too.

Sydney was 6 weeks old today, I don't know where the time went. She's starting to give us smiles and I got my first, "ah-goo" out of her yesterday. The girls are crazy about her still. It's funny, when I change her, I wrap her diaper up in a little ball with the velcro strips and put it down while I'm putting her clothes back on. Taylor, without a word, appears from nowhere, swoops in, snatches it up, and throws the diaper away for me. She reminds me of the kids that grab the tennis balls during a match - silent, fast, and efficient.

So things in general are going well here. It's a little crazier with 4 kids in the mix, but I can't imagine a house filled with more love than ours. I am the luckiest mom in the world. :)

Monday, September 24, 2007 8:05 PM EDT

Happy Birthday Matty! Thank you for making sure your mom had a good day today. :)





We are off to the Jimmy Fund tomorrow morning. Hunter is having a lumbar puncture. She is excited for 'sleepy medicine.' Little weirdo. :)

My mom (have I mentioned my wonderful mom lately?) will be staying with Taylor which is a nice break for me. That kid is forever trying to run away from me. I've seriously considered bungee cording her to the bed when we're at clinic.

We also start another steroid cycle tomorrow. Hard to believe it's been 10 weeks since her last cycle of dex. Only 40 weeks of treatment to go. (I know, 'only' 40? One could gestate a human child in the same amount of time. Well apparently *I* can't, considering Sydney was 2 weeks late... but, you know.)

Sunday, September 23, 2007 8:38 PM CDT

Eat at Chili's tomorrow! They are donating their profits on 9/24 to St. Jude's.

Tomorrow would also have been Matty's 8th birthday. Please keep Matty and his family in your thoughts and prayers.

And to our friend in Iraq - we love you and pray for your safe return every day.

Monday, September 17, 2007 2:38 PM EDT

Hunter was the Jimmy Fund Walk Hero for Mile 8:


My brother Matt and his girlfriend Kate after the walk. Kate is also a cancer SURVIVOR! You guys rock. :)



Saturday, September 15, 2007 11:27 PM EDT

Tomorrow is the annual Jimmy Fund Walk. Last year I walked the 26.2 miles with 2 of my brothers and my sister. It was an amazing experience, seeing the 26 Heroes (including Hunter) at the mile markers along the way. This year we'll be cheering on the walkers, most especially:

Kira's Kruisers

Jake's Warriors

Team Mary

Team Flapjacks

Zach's Pack (the team walking in Hunter's honor this year)

These five teams together have raised over $58,000! Thank you all so much for walking, and thanks to everyone that has generously donated.

And congrats to my friends on Project Cheezit. Yay!! :)

Wednesday, September 12, 2007 8:45 PM CDT

My heart is just so sad for our friend Mary right now. We met Mary back in July, 2006 when we were inpatient together and she was first diagnosed with hepatoblastoma. Her mom Kristina is one of my Cool Cancer Mom friends and I love them both so much. I mean look at this face - how cute is she?!



Mary is 4 years old and has been battling a relapse of her hepato that showed up in her mediastinal lymph nodes. She just finished 4 tough weeks of radiation to her chest on Monday. The celebration got cut quite short though because yesterday they received word that her AFP (tumor marker) count has jumped. The cancer is back.

Kristina is now looking into solid tumor clinical trials, as Mary's oncologist has more or less told them that they are now out of standard treatment options. Words that no parent should EVER EVER EVER have to hear.

I think I've mentioned before that hepatoblastoma is what took my baby sister away, and it's also what took Matty away. It is a lousy, rotten, horrible, insidious type of childhood cancer. And right now, there are NO clinical trials open specifically for hepato at all. None.

To say that I am frustrated and angry and generally PO'd at cancer lately would be an understatement. It so SUCKS to watch my friends hurting for their children, it sucks to know that not all of our kids will beat this disease, it sucks that the ones that do beat it have to go through so much to get there.

Please, if you do nothing else tonight, go to the CureSearch site and support the Conquer Childhood Cancer Act. This cancer crap needs to stop.

Mary, we love you girlfriend!

Tuesday, September 11, 2007 12:52 AM EDT

Monday, September 10, 2007 9:19 PM CDT

So yeah, two weeks just flew by and I didn't even realize it. This is going to be a picture spam update. Lots of things happening around here. Hayley started second grade. This year she was embarrassed by me taking pictures of her first day. I'm sure that this is just the first of many times I will bring her shame by doing obnoxious and humiliating MOM things.

Reluctantly posing while waiting for the bus:


Hunter goes back to preschool on Wednesday and she is SO excited. I am keeping all my body appendages crossed that she will be able to go much more often than last year.

Sydney ("I don't need no stinking sleep!" and "as long as you're up, sit back down and hold me") is doing great - I'm still trying to grasp the idea of having 4 short people in this house. I have fears of leaving one of them in a shopping cart or something, but it hasn't happened yet.

I caught her smiling in her sleep last night:


And this one just cracks me up with her little squished baby face and tiny toes spread out like a rainbow:


On Friday Renee (Kira and Katana's mom) and Kerry (Patrick's mom) - two of my Cool Cancer Mom friends - came over to visit with the kids. Here's Kira holding Sydney:


Patrick, Kira, Sydney and Hayley:


And Hunter, Hayley, Kira, Sydney and Katana:


Please take a few minutes and check out the video I posted above. This was created by two of my cancer mom friends. The kids in the video are all children of my online friends from ALL-Kids.

September is Childhood Cancer Awareness Month and we're hoping to get a plethora of letters written in support of the Conquer Childhood Cancer Act 2007. It's really easy to voice your opinion, you just go here, enter your zip code, and the Curesearch site will walk you through.

We were pretty excited to see that not only has CureSearch posted the link to the video on their site, but so has golfer and CureSearch supporter Greg Norman.

Lastly, I'm asking you to keep a dear friend of mine in your thoughts and prayers. Her husband just deployed to Iraq. It's been a rough year for them already and this will be a difficult time for them to be apart. We love you guys and we're praying for a quick and safe return.

Edited to add: After posting and reading this back I realized that I did manage to leave a kid out. She's not sitting in a shopping cart at the parking lot at Shaw's but still...

Here's a random picture of Taylor just to prove I still do in fact own all four children.

Sunday, August 26, 2007 6:36 PM CDT

Sydney Elizabeth is here! She was born on August 23 at 2:08
PM. 7 lbs 13 oz, 20" long, with a head full of dark (!) hair.

She held out for quite a while, but when she finally arrived, it was FAST. (As in, no time for an epidural - the anesthesiologist was literally standing right there with a needle in his hand waiting to give me the epi when she decided enough was enough!)

Hours old:




She had to spend a few days under the bilirubin lights as her A blood and my O- blood didn't get along too well once she was born.



We were released this morning. The girls are in LOVE with her - they want to be touching her and holding her and 'helping' with her 24/7. When Sydney cries I have 3 little voices yelling at me, "Mommy, come quickly, she's CRYING!" :)

One last thing, Sydney was born on my dad's birthday. Hunter was born on the anniversary of the day he died. I think that's pretty cool. :)

Monday, August 20, 2007 11:19 PM CDT

Quick update - Hunter is doing GREAT, her counts have been perfect, she feels good, she loves her bald head (as do I). :)

And no, we have no news on the baby front. She is 10 days late. I shudder to think what this means as far as how stubborn she's going to be once she's out.

Thursday, August 16, 2007 11:40 PM EDT

Our thoughts are with my friend Mike tonight as his wife Mackenzie earned her angel wings early this morning. Rest in peace, Mackenzie. :(

Tuesday, August 14, 2007 8:16 AM EDT

Please keep my friend Mike's wife Mackenzie in your thoughts and prayers.

Saturday, August 11, 2007 5:47 PM CDT

Happy 7th Birthday to my princess Hayley! We love you so much sweetie!

Apparently Baby Girl v4.0 didn't want to steal the spotlight from her biggest big sister because she is still happily hanging in there, despite this being her due date. I am this >< close to serving an eviction notice on this little tenant!

Thursday, August 2, 2007 8:07 PM EDT

Please keep our dear little friend Alexia in your thoughts and prayers. She has relapsed after her second transplant.

Cancer SUCKS. I am so mad and sad right now. :(

Wednesday, August 1, 2007 12:23 AM CDT

We had another really fun weekend. Saturday we went to our buddy Jake's birthday party. Jake was celebrating not only his 7th birthday, but also having 1 year of treatment for ALL behind him. The girls had a lot of fun on the ginormous jumparoo and playing in the pool.

Sunday was the annual Jimmy Fund Summer Festival. This was our fourth year going to the festival, and the girls really look forward to it. We got to see all our Cool Cancer friends and caught up with a lot of people we haven't seen in a while.

Hunter and Taylor on the jumparoo again. I take no responsibility for the outfit she's wearing. She picked it out herself and was quite proud of it. I didn't have the heart to tell her to change. :)


Hayley and Hunter petting the baby animals - Hunter's favorite part of the whole day!


Taylor actually being gentle with the baby bunny:


Hunter and the baby bunny:


Hunter's still feeling really good with lots of energy. The steroid-induced manic chattiness has worn off although she's still really into Doritos, yuck! She thinks I am the meanest mom in the world because I won't let her eat Doritos for breakfast.

The back of her neck looks much better, it's just a lighter patch of skin now where it was peeling before. No hints yet of somnolence syndrome from the radiation. It's been 7 weeks since she started radiation so it could still happen, but so far, so good. We're still waiting to see some hair grow back, no sign of that yet.

No sign of the baby wanting out yet either. Hayley was 3 days early, Hunter was born on her due date, and Taylor was 3 days late. I am hoping that this little one doesn't continue the pattern and hang in there for 6 days past her due date! That would be meaner than Dorito breath at breakfast time.

Wednesday, July 25, 2007 2:58 PM EDT

Last dex pills swallowed at 8:30 this morning. We get a 9 week break before the next round of steroids. The next 5 weeks are just IV methotrexate once a week, and 6MP every night.

Hopefully this means no more Doritos and Pineapple Cottage Cheese for breakfast.

Other than the bizarre food cravings, the biggest side effect from the steroids this week has been er, extreme chattiness. Excessive verbosity. Overactive loquaciousness. Basically, if she's awake, she's talking. Sometimes to me, sometimes to her sisters, sometimes to the computer, sometimes to her toys, sometimes to thin air. Pretty difficult to get a word in edgewise around here lately!

The other weirdness we're dealing with is a patch on the back of her neck. She has always had a small red storkbite there. Over the last week, it seemed to get bigger and redder, and yesterday it started to peel, almost like a sunburn. Since I'm obsessive about using SPF 50 on all my kids (and hats on Hunter as well), I know it's not a sunburn though. Our friend Keegan got the exact same reaction in the same spot post-radiation, so his mom and I are fairly convinced this is some sort of radiation burn. It doesn't seem to be bothering her too much.

The girls are getting excited to welcome their new baby sister soon. I had an ultrasound done yesterday that showed her holding her feet and playing with her toes. Pretty darn cute. I can't wait to meet her. :)

Monday, July 23, 2007 10:09 AM EDT

Two things:

1) I loved the new Harry Potter book.

2) Doritos for breakfast is really, really, REALLY gross. Two more days of steroids to go. ;)

Saturday, July 21, 2007 10:58 AM EDT

MAINTENANCE!

We got Hunter's counts back yesterday morning and she was finally high enough to officially begin Maintenance chemo. I have never been so excited to start a cycle of steroids. :) She also got methotrexate and 6MP.

And now that we've begun Maintenance, we actually have an end date in sight. By my calculations, she will have her final chemo on July 8, 2008. :)

Now we are off to Toys R Us to pick up my copy of Harry Potter.

Tuesday, July 17, 2007 9:12 PM EDT

Hunter's counts dropped again and she's too low to begin Maintenance chemo. We're going to have a nurse come out to draw labs on Thursday and if she's high enough by then, we'll start Maintenance on Friday. She has 40 monos with an ANC of 500 (needs to be 750) so I'm cautiously optimistic.

I'm not overly eager to start more chemo, but until we get going, we don't have an end date in sight. We need to start so we can finish!

I just went upstairs and Hayley and Hunter were sitting in the same bed with the lights on, looking at Disney Princess books, and whispering. Bedtime around here is 7:30, so I turned off the light and told them to go to sleep.

As I was leaving their room, I heard Hunter say quietly to Hayley, "pretend our evil stepmother came in and turned out the lights so we had to sit in the dark..."

I get no respect around here, I tell you!!

Monday, July 16, 2007 3:44 PM CDT

We are coming off of a really great weekend here. Hunter's ANC jumped up and we were able to discontinue the G shots on Wednesday.

Saturday, we had breakfast with Dr. Jason and his wife Shannon, who were in town visiting. It was great to see them again. :)



Sunday, we went to a cookout at Matty's family's house with some other families from clinic. When we got there, the other moms surprised me with a baby shower!



I was so shocked and touched that my friends would do that for me. They also all chipped in and bought me a beautiful Tiffany bracelet with a heart locket on it, inscribed, "Mom". The Cool Cancer Moms are so awesome!! I wish we knew each other for some other reason than all of us having kids with cancer - but I feel so lucky we all found each other.

It was the first time all of our families were together in one place at the same time. Even with the intermittent rainshowers, everyone had so much fun.

The kids had a great time smashing the pinatas.



Mike, and Kira's dad, patiently waiting their turn at the pinata. Funny guys...



Jake takes a mighty swing:



And enjoying the loot! There were Lil' Webkinz in the pinatas - how cool is that?!



We got home late last night and the kids were wiped out. Taylor actually put herself to bed about 5 minutes after we walked in the door.

It was a happy, wonderful weekend. :)

Tomorrow we head back to clinic to start Hunter's first week of Maintenance chemo, beginning with 5 more days of steroids. Back on the roller coaster again!

Tuesday, July 10, 2007 7:50 PM EDT

Hunter is home! We got home last night (after a promise to get us out the door by 4PM, we left at 6PM but hey - we left!)

Her ANC was still only 270 but since she'd been off the antibiotics for a full day with no fever (and still no fever) and she had lots of monos, indicating her counts should be recovering, they let us go. :)

We had to start GCSF shots last night which did NOT go over well with Hunter. I don't blame her one bit as we thought we were done with those. I feel so guilty putting her through more leg shots.

We get counts done tomorrow to see if she's ready to start Maintenance chemo (and more importantly to Hunter - if we can stop those stinking G shots!)

And just because my kids crack me up, last night Taylor was wearing a princess nightgown and telling us all, "I a princess!" Then she proceeded to lift up her nightgown to show us her Cinderella Pull-Up (just to drive home the point, in case we hadn't noticed the crown, the high heels and the gown already I guess).

Me: Taylor, put your skirt down, princesses don't show off their undies!

Hunter: MOM! Princesses don't wear undies.

Me: They don't?

Hunter: No (rolls eyes at me). They wear pantalettes!

(OK I actually looked up pantalettes on Wiki - and the little stinker is probably right. My 5 year old child is officially smarter than me now.)



Sunday, July 8, 2007 8:34 PM EDT

Hunter is still in the hospital. Her ANC actually dropped a bit today from yesterday. She's been fever-free since she got there and nothing has grown in the blood cultures, so the plan now is to discontinue her IV antibiotics and see what happens in 24 hours.

If she remains fever-free and her counts start rising enough, she'll be discharged. Maybe tomorrow, but I'm not holding my breath.

This is not exactly how I pictured us sailing into the Maintenance part of her chemo!

Friday, July 6, 2007 3:54 AM EDT

Mike just called and Hunter's been admitted.

This is totally my fault. On Tuesday when we were at clinic for counts I brought the nurses on 6N a giant frosted chocolate chip cookie as a belated thank you for all their love and compassion during our 24 inpatient stays since Hunter relapsed. As we were leaving I jokingly said, "I'm sure we'll see you soon enough!"

I didn't mean TODAY!! Ugh.

Thursday, July 5, 2007 11:44 PM EDT

11PM and she's got a fever of 38.6. Hunter and Mike are heading into the ER tonight. Her ANC was 170 on Tuesday so if it hasn't bounced back to 500 in the last couple of days, we're looking at a 48 hour minimum inpatient stay.

Luckily, I guess - Mike and I were far grumpier about this than Hunter was - she was happily packing her bags to go and telling us all of the things she would be needing for a few days. I wish this wasn't so routine for her that a 2 day hospital stay is nothing but a minor bump in the road. She's excited to introduce everyone at the hospital to Hoppy. That's just how she rolls.

I wish I were more like her, taking this in stride rather than being really ticked off about the whole thing.

I swear, I have SO much to learn from this kid. SHE is the one with the fever that's been feeling crummy for days, and I'M the one complaining. I'd do well to be more like Hunter, I think.

Wednesday, July 4, 2007 2:27 EDT

Happy Fourth of July!

Hunter finished up her 21 days of steroids on Monday night. She handled them pretty well overall and didn't get quite as puffy, irritable, or uncomfortable as she did the last time around. She now gets a week off from all meds before we begin 50 weeks of Maintenance chemo (which incidentally starts with a 5 day cycle of steroids - how unfair!)

Physically since she finished radiation she has been absolutely exhausted. Napping on and off for most of the day with very few bursts of energy in between. In the last week all of her hair has fallen out and she's got nothing but a few wisps left. While I knew that was coming, it was tough seeing it happen yet again. It doesn't seem to be bothering her much but she's been quiet about it so it's hard to tell. Her back and legs have been achy too which is probably from coming off the steroids.

We had a few events this weekend that she'd been looking forward to for weeks - our friend Katie's birthday party on Saturday, and our town's 4th of July festival on Sunday. She ended up sleeping through most of the party in her stroller on Saturday, and she lasted for 4 rides on Sunday before she was ready to go home. I can't wait for my little bundle of energy to return!

Yesterday we had clinic - just for labs, since this is a week off of chemo - so I brought all three girls with us, thinking it was going to be a quick day. After 3 weeks of steroids I was expecting her WBC (white cell count) to be through the roof and her ANC to be very high - usually steroids mean a nice high white count. I was very surprised when her counts came back and her WBC was 0.3 (critically low), her platelets were 14, and her hematocrit was 24. So much for cranial radiation not affecting blood counts! Instead of a quick day, we settled in for platelets and a RBC transfusion. (And I had to try not to freak out, thinking of all the germs she may have been exposed to at the festival on Sunday while severely neutropenic - ugh.) We got home from clinic at 7PM. We cooked out, then watched our town fireworks. I'm really glad that Hunter was able to stay awake for that (after a quick post-dinner nap), as she has been looking forward to fireworks for an entire year now.

Today post-transfusions her color is a little better but her energy level is still very low. Instead of napping though, she's laying quietly on the couch eating Goldfish crackers - which is progress, I guess. I hope we'll see some of our old Hunter back again soon!

Tuesday, June 26, 2007 7:37 PM CDT

Radiation is DONE! Hunter had her 10th and final fraction this morning along with her 4th lumbar puncture with chemo in the last 2 weeks. The worst of her treatment is now behind us. Now we hope and pray that the radiation worked and that it didn't do any long term damage to her brain. She has one more week of steroids, then a week off to rest, and then we begin 50 weeks of Maintenance chemo.

After the first fraction, Hunter chose to have 'sleepy medicine' for the next 9 fractions. While it meant being NPO (no food or drink after midnight) every day, I certainly wasn't about to argue with her. She's been through more than enough already. She never once complained about having to get up at 5:30 AM and driving into Boston every day for 2 weeks. She never complained about being NPO. She never complained about her sore back from the LP's. She is taking her meds like a champ. If sleepy medicine makes her happy, I'm all for it!

While the whole radiation process just pretty much stinks, the radiation oncology team was wonderful. Here's Hunter with Dr. Koka, the anesthesiologist. She was always happy to see him. She says, "I like that Dr. Koka, he's a funny guy!"



Hunter with the team just before her final treatment this morning:



And a very well-deserved rest back at clinic this afternoon.



Not only did she have radiation and a lumbar puncture this morning, but she also had to get platelets, and then her final PEG shots and Vincristine at clinic. To add insult to injury, the dose of PEG was just high enough again this time that it had to be split into two syringes. So she got a painful shot in each leg to top off her day. The promise of a trip to Build-A-Bear this afternoon was amazingly enough to make her smile from ear to ear despite everything she'd been through today. I was surprised that she was up for it but she insisted on going today and she was the happiest kid there by a long shot!

Thanks Laurie and the DFMC for the cool DFMC singlet that you all signed. You guys are awesome! :)

We are looking forward to a week off now to enjoy the summer and play in the pool. Hunter's pretty worn out from the early mornings and the treatments and I'm happy she'll have some time to rest and have fun being five.

Saturday, June 23, 2007 10:41 AM CDT

Monday, June 18, 2007 6:11 PM EDT

We finished Hunter's 4th fraction of cranial radiation this morning. She's tired, and her hair is thinning very quickly, but overall she's doing well.

Each day that we put behind us is bittersweet. Each day, when I leave her lying on that table, and that big door closes behind me and the radiation begins, I wonder - is this the day that the treatment kills that one hidden leukemia cell and saves her life? Is this the day that the treatment damages her brain, and robs her of some of her cognitive abilities down the line? When that door opens again and she comes out, will she be the same little girl I sent in there - or will today be the day that her future is forever changed?

But as I look at her now, happily playing Webkinz and Club Penguin on the laptop, surrounded by her 'guys', I just think about the fact that this is what we have to do to give her the best chance to beat this cancer once and for all. We'll deal with anything that happens in the future as it comes. For now, I'm enjoying her random little, "I love you soooooo much!" announcements just a little more than ever before.

We're also on Day 6 of 21 days of steroids. The craving this time is bacon - a pound of bacon a DAY, cooked to a crisp. She eats it for breakfast, lunch and dinner. And snacks. And they told me at the Jimmy Fund today to try and limit her sodium intake while she's on steroids. Yeah... right...

Wednesday, June 13, 2007 5:27 PM EDT

We are home from Day 1 of cranial radiation and Hunter did an awesome job. I was SO proud of her!! Today's session was a little longer than the next 9 will be, as they had to take some x-rays of her little head as well. When we got in to the hospital this morning, they said if she could do the treatment without sedation, that we could go about an hour and a half earlier than planned. Hunter gathered up all of her 'guys' and marched right in to the treatment room. After showing everyone her fancy mask and introducing them to her guys, she laid right down on the table. When they first put her mask on and immobilized her, she was a little nervous, but she stayed very calm, and never asked them to take it off.

I was able to stay with her until the radiation started, and then I watched her on the monitor from the next room. There's an intercom so I was able to talk to her over the speaker as well. It was hard to see her little tiny body on that big table and know that there was no way I could be in the room with her, but she did great. When it was over I went back into the room and she gave me a huge hug. She knew darn well that she'd just done something very brave. Did I mention how proud I am of her?!

We were done with radiation less than half an hour after we walked in to the building.

Back at clinic, Hunter got a 24 hour dose of Zofran, Vincristine, and a PEG shot. She was not happy about the shot and I sure wish we didn't have to do that to her after everything she went through this morning. She also started day 1 of 21 days of steroids.

Tomorrow should be an easier day, just radiation ('just' radiation - HA!) and then to clinic to draw labs. Friday after radiation she has a lumbar puncture with chemo. This weekend will be a well-deserved rest.

UPDATE: This continues to be a big day for Hunter - tonight she learned to swallow pills! This is HUGE as the liquid form of Dexamethasone (steroid) is absolutely FOUL and disgusting tasting. Getting the dex into her was half the battle in the past. Tonight we practiced with mini M&M's and she caught on within about 30 seconds. I gave her a pill form of dex tonight and she actually thought it was FUN to take. What a relief to know that the 40 doses of dex coming up over the next 20 days aren't going to involve any more nasty tasting liquid for her.

So proud of my girl for so many reasons tonight. :)

Tuesday, June 12, 2007 3:19 PM CDT

We went to clinic today to get counts done. While we were waiting for the labs to come back, we went over to Brigham & Women's so that Hunter could see her mask.

When the Child Life Specialist first brought the mask into the room, Hunter wasn't so thrilled with it, but that changed as soon as the CLS said she could decorate it with stickers and markers. She spent about half an hour making the mask pretty. It was definitely a lot less creepy to look at by the time Hunter was finished with it, though part of me still wanted to cry every time I thought about what it's going to be used for.

Hunter beautifying her mask:





Trying it on - it fits!



I like this better - the mask as a Hoppy house!



When we got back to clinic, her counts were back and everything was perfect. (In fact, the Chemo Kid had a higher hematocrit today than I did last week at MY doctor's appointment!)

So we will start Day 1 of ten days of cranial radiation tomorrow morning.

Thursday, June 7, 2007 3:36 PM EDT

Hoppy is in the house!!! I couldn't wait to give her the package - we have one HAPPY little girl here. :)





The elusive Hoppy:


Happy Anniversary Mike - 10 years ago today I married my best friend. :)

Wednesday, June 6, 2007 4:10 PM EDT

Just heard from clinic and her counts didn't come up enough to start radiation tomorrow. The new plan is to give her the weekend off and begin NEXT Wednesday instead.

This means she'll be in the middle of radiation for her 5th birthday, but I guess there's not much we can do about that. We'll enjoy this week off and continue stalking the mailman for Hoppy's arrival. :)

Wednesday, June 6, 2007 11:00 AM EDT

Cranial Radiation - A Four Year Old's Perspective

Hunter: Mommy, my brain is where I think of all my ideas.
Me: Right.
Hunter: And radiation is to get all of the leukemia out of my brain.
Me: Right.
Hunter: So the leukemia doesn't steal any of my good ideas.


Tuesday, June 5, 2007 11:35 AM CDT

We went into clinic for counts this morning to make sure we were good to go for Day 1 of radiation tomorrow. Platelets had to be 75 and ANC 750. Hunter's platelets were 75 on the nose, but her ANC was only 370. So we can't get started tomorrow.

She did have 26 monos, which means her ANC should be on the way up. We'll get counts again in the morning and hope to start on Thursday instead.

I wasn't exactly looking forward to beginning, but it's frustrating to have the day all set and then have plans change. I guess if that's the biggest complication we have though, I'll be very grateful!

We did have some really good news this morning though as I FOUND HOPPY!! Well not original Hoppy, but the EXACT same bunny. I was so excited, maybe more so than Hunter. I bought him and he should be here in plenty of time for Hunter's birthday in a few weeks.

The search had been driving me crazy - crazy enough that I was this >< close to buying the runner-up version, which was a Steiff bunny that cost a really obnoxiously obscene amount of money. A mother's love plus extreme feelings of guilt are a dangerous combination!

Thanks again to everyone that emailed me, someday Hunter will be able to appreciate the worldwide Hoppy Hunt that you guys had going. :)

Friday, June 1, 2007 10:24 PM EDT

Update on the Hoppy Hunt:

You guys are AWESOME! I've gotten over 100 emails with potential Hoppy sightings. Thank you all so much. :)

These are the closest we've come so far:

Hoppy was a cross between this:


and this:


The first bunny is perfect other than the coloring. The second bunny is about twice the size of the original Hoppy, but I'm seriously thinking about buying "Tulip" and telling Hunter that Hoppy grew up. Would that be very bad?! ;) (Answer: Hunter's too smart for that... I know she'd just roll her eyes at me!)

Thursday, May 31, 2007 4:03 PM EDT

I am on a bunny hunt. ("Shhhhhhhh, be vewy vewy quiet; I'm hunting wabbits, heheheheheheh.")

Hunter used to have a stuffed bunny that she named "Hoppy". Hoppy was tiny (about 6" long - Beanie Baby sized maybe, but I don't think he was a Beanie Baby), gray and white, and super soft. I don't remember where Hoppy came from exactly, but she loved that bunny.

Hoppy came with Hunter to the hospital when we were in for Thanksgiving, and I made the mistake of changing the sheets in her bed without thoroughly shaking them out first. Unbeknownst to Hunter, Hoppy went to the hospital laundry, never to be seen again.

Now this kid has more stuffed animals than she knows what to do with, and I figured that in time, she would forget all about Hoppy. But for the past 6 months, she's asked about Hoppy at least 3 times a week. My guilt at being the cause of the bunny's demise is beginning to get to me, and so I've been scouring the internet trying to find a new Hoppy.

I've Googled everything I can think of (rabbit, stuffed animal, plush, bunny, Dutch rabbit, etc.), but haven't come up with anything close.

This is what Hoppy looked like (minus the pancake on his head) If anyone has seen a stuffed bunny for sale that fits Hoppy's description, could you email me? I'd love to 'find' Hoppy in time for Hunter's birthday next month! :)

Wednesday, May 30, 2007 9:17 PM EDT

Well if last week's theme song was "The Only Way (Is The Wrong Way)" by Filter, today's was "Switch" by Will Smith. "First one in, last one out the club; burstin' in, passin' out in the club." Except substitute the word 'clinic' for the word 'club' - and the word 'nappin'' for 'passin' out'. We were quite literally the first ones there this morning at 7:45, and the very last ones to leave at 6:30 tonight.

We got to Brigham & Women's just before 8:00 and found the Radiation Oncology department playroom, which Hunter was very excited about - all new and different toys to play with! After I met with the radiation oncologist and the radiation nurse, and they both warned me that the mask is HOT when it goes on to make the mold - and that even adults sometimes get startled by the heat, I decided to go ahead and have them sedate her in order to make the mask. I figured if she has a bad first experience with the mask, we don't have a prayer at being able to do her actual radiation without sedation. We've been watching the video on our buddy Keegan's website a lot lately and she seems to be OK with the whole idea of the radiation process, so we'll see how she does next week.

She woke up pretty quickly from the sedation but had a very hard time coming all the way out of it, slurring and flailing about, demanding granola bars. Since she was still so loopy we had to withhold the food from her for about 20 minutes and she was NOT happy. When she perked up enough to eat safely, she wolfed down three granola bars in a matter of about 20 minutes. (No small feat considering she insisted on opening them herself and she was probably still seeing double for the first one or two!) But the mask is now done, and the first step in this crappy radiation process is out of the way.

We got back over to the Jimmy Fund at about 10:30 and had blood drawn there for counts. I was pretty sure she was going to need blood - as her lips were sort of grayish colored, and platelets - as she had some petichiae on her face and arms. When her counts came back she did indeed need both. Her hematocrit was down to 20, which is the lowest it's been that I can remember; and her platelets were 13.

Unfortunately, clinic was CRAZY busy today and we had to wait around for a bed to open up before we could start her transfusions. It was 1:00 before they were able to hang her platelets, and then we found out that the blood bank was having 'issues' and that the blood wouldn't be ready until 3:30. That worried me because it takes 3.5 hours or so to transfuse a full bag of blood, and clinic closes at 6:00. With her crit that low I didn't want to skimp on how much blood she was getting, so I begged them to let us stay late. They let us stay half an hour after the close of clinic, which was good.

Somewhere during her transfusion, the line sprang a little leak and she ended up getting blood all over her dress, yuck. Then when we deaccessed her, her access site didn't want to stop bleeding, despite the unit of platelets in her. Poor kid came home looking awfully messy. After she went to bed she had to come down for me to change her dressing again because the darn access site started bleeding again tonight. Ugh. Clearly some of the blood made it to where it was supposed to be going though, because it's after 9:00 and she's still WIDE awake over an hour and a half past her bedtime!

So... it's been a long, LONG day today. But we got to see a few of our friends, Mary, Matty B., and Maddie - which always makes things better. :) And that creepy mask is made and done and I'm very happy to have that behind us. The Big Brain Zap starts next week. Just keep swimming...

Sunday, May 27, 2007 9:16 PM EDT

Just wanted to clarify... we are done with Big Scary Chemo - but Hunter still has 50 weeks of Less Scary Chemo to go, once she finishes radiation. :)

Friday, May 25, 2007 11:38 PM EDT

Because my journal entry from Wednesday makes me sad, here are two photos that make me happy. :)

This is how Hunter watches TV - with all her 'guys' lined up right next to her. Nothing around here happens without at least 2 or 3 of her guys along for the ride.



And here's Hunter and her shadow (aka Taylor). These two are inseparable lately. People ask me all the time if they are twins - go figure.



Thinking of our friends, Jake, who's in the hospital with what might be pneumocystis pneumonia, and Matty who has been in heaven for 2 months today. Sandy, Johnny, Chris and Zach, we love you.

Wednesday, May 23, 2007 8:02 PM CDT

This was truly a roller coaster of a day. We got into clinic this morning and started IV hydration right after Hunter's port was accessed and her blood was drawn for labs. About an hour later, our NP found us and broke the news to us that Hunter's WBC (white cell count) was only 1.01. We were still waiting for the differential to come back with her ANC, but with a WBC that low, we knew she'd have to have 75 percent neutrophils in order to have the ANC of 750 required to get chemo - which was pretty unlikely. We actually were making plans to go home and come back next week to get her chemo. But amazingly, when the diff came back, she actually had 74 percent neutrophils which gave her an ANC of 740. Close enough! So Hunter was able to get her very last round of Big Scary Chemo - no more Etoposide ever!!

We didn't get much of a chance to celebrate though, as the Radiation Oncologist came over to visit. We talked about what to expect during the radiation process, and then we got to the really awful stuff - the 'talk' about the potential side effects. Let's see - the most pleasant of the side effects we should expect are tiredness, sunburn-like skin irritation, and hair loss (and for the first time in a year, she's actually got a decent head full of hair to lose). 6-8 weeks from radiation we can expect what's called somnolence syndrome, where Hunter will likely have a few days to a week of sleeping 20 or more hours a day.

Less likely but far scarier, bone growth abnormalities, cognitive disabilities, growth hormone deficiency, stroke, brain hemorrhage and seizures. And the one that actually brought me to tears to hear - brain tumors, benign or malignant.

None of this was new news to me, but to sit there and listen to a doctor telling you that any of these things could happen to your baby - well, it was really, really, REALLY hard. And then I had to sign the consent form and agree that despite all of this scary stuff, we are going to go forward and radiate my child's brain anyway.

Right after the Radiation Onc left, I went into the hallway away from Hunter, and had a little mini meltdown. I'm so glad my friend Renee was there to make me laugh or I might have had a full-blown cryfest.

It's a horrible feeling to know that we have to do this to make sure that she doesn't relapse in her spinal fluid again, when every instinct I have as a mother is screaming, "NO, what are you, crazy?! Forget it!! Keep your damn poisonous radiation machine far, far away from my baby!!" It's my job to protect her, and it feels so wrong to be knowingly putting her in harm's way, and yet not to have a choice in the matter. It feels like being forced to send her out to play in the street and having to stand there at the window, watching and hoping to God that she doesn't get hit by a car.

Stinking leukemia - I keep thinking, I wish we could be radiating just about any part of her other than her brain. Her little not-quite-five-year-old brain. I freaking HATE cancer!! I've had that song by Filter running through my head all day, "and it feels like - the only way is the wrong way."

We go in for our planning meeting with radiation oncology next week. That's when they'll make her mask, that will be used to immobilize her head for the treatments. They'll take x-rays of both sides of her head and mark the mask so that they know where to radiate her. I hope that Hunter does OK with the whole mask deal, it's creepy to look at, let alone to have to wear it. But we'll deal with that next week.

And back on the bright side of things, congratulations to Renee's daughter Kira, who had her last round of chemo today. Kira, thanks for sharing your cake with us. :)

Sunday, May 20, 2007 5:39 PM EDT

HOME!

24 inpatient stays DONE.

Found out this morning around 11AM that Hunter cleared her methotrexate.

She needed a blood transfusion after she cleared, and Mike came in to the hospital with the girls to stay with Hunter until she was discharged, so I could go out to lunch with some of the moms from clinic.

Kristina, Renee, Sandy, Kerry and Kim, thanks as always for the laughs and the 'therapy'. Our little meetings have become one of my favorite days of the month!

We go back in on Wednesday for a full day of chemo, and then Hunter is officially DONE with the Big Scary Chemo phase.

We start cranial radiation in two weeks. Still trying not to think too hard about everything the radiation entails.

Just keep swimming...

Thursday, May 17, 2007 3:07 PM CDT

We are here on 6N waiting for Hunter to be hooked up to 24 hours of methotrexate. This is her very LAST inpatient stay for chemotherapy!!

Once she clears the methotrexate and we go home (probably on Sunday) the next 54 weeks of chemo will all be done outpatient at the Jimmy Fund. She was announcing it to everyone at clinic today, "this is our last time getting my chemo at the hospital!" :)

We had Taylor with us today and then Mike picked up Hayley from school and he and I switched so he'll be staying with Hunter tonight.

Taylor has become rather entertaining lately, she's in a phase where she insists on being a cat or dog. She crawls around on the floor meowing or barking, and even plays fetch in dog mode, it's really funny. (I think Hunter may have put her up to it, the kid wants a puppy SO BADLY!! Maybe having a canine-sibling is the next best thing?)

Today Hunter was watching a cartoon at clinic where there was a little puppy that kept licking everyone and everything. Apparently Taylor took this as an acting lesson and immediately became a puppy and started licking me and Hunter. I thought that was gross until she got down on the floor in the infusion room at clinic and I realized with horror that she was licking THE FLOOR!

After resisting my initial impulse to Purell her tongue, I realized I should probably just be grateful that it's not my immunosuppressed child that was cleaning the clinic floor with her tongue. As my friend Kristina would say, "good times!" ;)

Friday, May 11, 2007 7:54 PM CDT

An early Happy Mother's Day, especially to:

My mom - for putting your own life on the back burner so that you could be with my family. We could not possibly have managed getting through the past year without you. Thank you for being there and for always letting us know how much you love every one of us. I feel so lucky to also call you my friend.

My August 2000 moms - for 7.5 years of friendship now. We've been through a lot together over that time, and you've all been my rock, my sanity, my sisters. I hope you know how much you all mean to me.

My ALL-Kids and Caringbridge moms (and heck, dads too) and the moms who check on our Caringbridge family - thank you for 'getting it' and for all the information, love, and unwavering support over the last 3.5 years. Our group is something pretty special.

My mother-in-law - thank you for always making us feel loved from 2000 miles away.

The CCMC - Sandy, Renee, Kristina, Kerry and Kim. I am so incredibly blessed to have you all in my life. While I wish to God that cancer hadn't invaded our lives and hurt our beloved babies so much, I am so grateful to have you all to laugh with and cry with. Amazingly we seem to do a lot more laughing together than crying. I hope you guys know how special each and every one of you are.

I love you all.

One of my ALL-Kids friends sent this to me, and it hit me pretty hard.

Some Mothers Get Babies With Something More
by Lori Borgman

My friend is expecting her first child. People keep asking what she wants.

She smiles demurely, shakes her head and gives the answer mothers have given throughout the pages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes.

Of course, that's what she says. That's what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.
Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball
out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want.
Some mothers get babies with something more. Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close.

Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to
a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body.

Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery.

The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it.

Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the cliches and the platitudes, well-intentioned souls explaining how God is at work when
you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary.

You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil.

You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.

You can be warm and tender one minute, and when circumstances require, intense and aggressive the next.

You are the mother, advocate and protector of a
child with a disability.

You're a neighbor, a friend, a stranger I pass at
the mall.

You're the woman I sit next to at church, my cousin and my sister-in-law.

You're a woman who wanted ten fingers and ten toes, and got
something more.

You're a wonder.

***
Happy Mother's Day.

Love,
Katie

Thursday, May 10, 2007 3:28 PM EDT

Hunter's got a new favorite thing to watch on my laptop: Cancer Vixen. She giggles like crazy when the woman karate kicks cancer's butt. :)

Tuesday, May 8, 2007 6:04 PM EDT

We went into clinic yesterday for counts and everything looked terrific. Even her platelets were up to 149, they haven't been that high in months!

So back we went this morning for a lumbar puncture. She did great as always and started asking for pancakes and chocolate syrup from the moment the sedation wore off.

We are scheduled to go in for our final inpatient chemo a week from Thursday. Once that's done, there's just one more week of Big Scary Chemo to go before Cranial Radiation and three weeks of steroids. And then... at long last... 50 weeks of Maintenance chemo.

Radiation is scheduled to start on June 4 and will be 5 days a week for two weeks. I know we have to do the radiation, but it scares the bejeebers out of me.

I met with our attending oncologist this morning to discuss some of the plans for Hunter's future treatment, and Mike and I now have some pretty big decisions to make. I'd appreciate any thoughts and prayers that we will make the right choices - this has been weighing on me quite heavily for a while now.

Saturday, May 5, 2007 7:38 PM CDT

Hunter had her last day of preschool for the year yesterday. One of her teachers said that she kept announcing, "now I'm going to go do the NEXT fun thing!" for the entire 2.5 hours she was there. :)

Here is the little princess when I came to pick her up.



I can't remember if I mentioned it before, but we have decided to keep Hunter in preschool for one more year, although she will turn 5 in June. The fact that she's only been able to attend school for maybe 6 weeks all year - combined with the potential for her to have late-term cognitive difficulties as a result of all the chemo and radiation she's had/will have - made it seem like the right decision all around.

So while I'm a little sad that she won't be heading to kindergarten in the fall like a lot of the kids in her class, I'm very grateful that we have such a wonderful and supportive environment for her at her preschool.

My friend Nicole's Crop For a Cause scrapbooking event for the Jimmy Fund in Hunter's honor was today and it was so much fun! I spent the day with my friend - oops, Mary's friend - Sarah. I got a lot of work done on a very special album that I am making as a gift. Thanks to Wanda too for stopping by, it was so nice to see you!

A huge thank you to Nicole for organizing it. Also big thanks to our local Whole Foods - for donating breakfast; Panera - for donating lunch; Stampin' Up! - for donating the door prizes and gift bags; and to the New England Chapel for letting us use their space all day.

Wednesday, May 2, 2007 8:50 AM EDT

Our nurse Chris came in an hour ago and handed me Hunter's CBC - her ANC is 620, we get to go home today!! :)

She got platelets last night (I actually got my way around here for a change!) so we just need to wait for someone to do the discharge paperwork so we can blow this joint.

She's in a great mood this morning, very giggly. She came with me to the kitchen to make her breakfast (chicken nuggets and ranch dressing - GROSS!) and we met a mom whose 2 year old son had just been diagnosed with ALL on Saturday. I told her that Hunter was 18 months at diagnosis, and I think it did that mom a lot of good to see Hunter dancing and singing and being generally goofy and happy.

She'll get to go to her last two days of preschool now, I'm so glad for her. :)

Tuesday, May 1, 2007 3:49 PM EDT

Hunter's ANC took a nice little jump overnight to 230. Still neutropenic but heading in the right direction and we expect she'll be high enough to go home tomorrow.

We'd actually be going home today if it weren't for a pesky little fever she got last night. It went away and never came back, but her docs want to keep us for another day nonetheless.

She will also need platelets as she's down to 14 right now.

I'm in some discussions at the moment as to whether we should transfuse now or wait until tomorrow to do it.

I want to do it today since we'll be at clinic on Friday anyway and that will give us 72 hours to see which way her platelets are going and determine if she'll need another boost to get her through the weekend. They want to wait until tomorrow just in case her platelets are still going down.

She's had some of that horrible butt pain that always seems to come with the Ara-C for her. She did poop today and while that is a good thing, it left her screaming and in tears, which is so hard to see. She got a dose of morphine which definitely helped. Once her WBC comes up (it's .66 today) that butt pain should go away - at least that's how it's always worked for her in the past. And then good riddance to it and all the rest of the horrible Ara-C garbage when it goes!!

Monday, April 30, 2007 1:11 PM EDT

Hunter's ANC is going nowhere fast. Her WBC nudged up from 0.14 to 0.18 overnight, which brought her ANC up to a whopping 10.

She's currently conked out on Benadryl and is about to get a red blood transfusion as her hematocrit was low too. Platelets are down to 22 but unless she starts being symptomatic, we're going to hold off on transfusing those to see what her counts do between today and tomorrow.

At this point I'm just hoping we get out of here before Friday. Friday is the last day of school at her preschool and I really was hoping she'd be able to make it there one more time before the fall.

Sunday, April 29, 2007 8:03 PM EDT

Quick update - we got Hunter's counts back and her WBC (white blood cell count) is 0.14 (normal range is more like 6.0-11.0 for someone not on chemo). Which means her ANC is zero. Very doubtful now that she'll be in for only 48 hours. We might get out on Wednesday if we're lucky.

I just have to keep reminding myself that every time her counts crash this hard she's more or less starting from scratch with all new white cells in her bone marrow. The stinking Ara-C is kicking Hunter's butt but hopefully it's kicking leukemia's butt even harder.

I could hear her in the background when I was talking to Mike and she sure sounds chipper for a kid with no immune system. Mike said he wasn't allowed to turn on 'grownup TV' (a.k.a. The Amazing Race) until he finished reading her all her Curious George books. She's the boss when we're inpatient and she knows it!

Sunday, April 29, 2007 11:33 AM EDT

Well, after flirting with a fever that never rose over 38C (100F) for the past 24 hours, a 1AM puking incident, and then waking up nice and cool this morning, Hunter spiked a fever of 39.9C (104F) about 45 minutes ago.

She and Mike are off to the ER and because her ANC is the pits right now, we'll be looking at a minimum 48 hours inpatient.

I was looking at her history yesterday and it was definitely predictable that we'd be heading in today. After the Ara-C she's gone in for fever and neutropenia on Day 12, Day 12, Day 9, Day 11, and now again on Day 12. Have I mentioned how glad I am that she is DONE with that stinking Ara-C?!

(Actually it would be nice if one more trend holds true for us - she went in for post-Ara-C F&N on 4/29/2006 and got out on 5/1/2006. It would be nice if we could say the same a year later!)

Hoping now that this is just a quick stay with no nasty surprises, and that those G shots she's been getting for the last 10 days kick in soon so her ANC recovers.

Saturday, April 28, 2007 11:04 AM CDT

We're on Day 11 since the Ara-C. This is crash time and boy did her counts yesterday bear that one out. On Tuesday her platelets were down to 62, from 111 at discharge on Friday. Yesterday they were down to 9 (!). Needless to say, she got a transfusion. Our nurse drew blood afterwards and her platelets were up to 80.

Hunter's ANC is also 80 which means that other than clinic visits, we're staying in the house, using a lot of Purell, continuing the GCSF leg shots, and hoping for no fever.

The things she comes up with to amuse herself while we're under house arrest crack me up. Right now she's running around with a Zoo Pal paper plate stuck to her head with a headband, being a puppy dog.



If we manage to stay out of the hospital this weekend, we go back to clinic on Monday to see if her counts are beginning to recover. That's only 48 hours from now but it's a BIG 48 hours!

***

Sunday, April 22, 2007 2:43 PM EDT

We are home. Actually we got out of the hospital on Friday, less than 48 hours after we were admitted! For the second time, she didn't run a fever while getting the Ara-C. Her temp went up to 37.8 while she was getting the fourth and final dose, but it never hit the magical 38 degree mark.

We got started a little earlier than usual - the Ara-C went up at 1PM on Wednesday instead of the usual 4PM.

The downside of getting started so early is that the 42 hour PEG shot came due at 7AM on Friday, which meant Hunter got a shot in the leg as her wake up call.

I thought for a minute that she was going to go right back to sleep, but then her little head popped up and she sleepily announced that she wanted to go to the Treasure Chest to choose a prize for getting her leg shot. :)

So the last Ara-C is DONE and now we will hunker down and hope to avoid fevers for the next 2 weeks while we wait for her counts to bottom out and then rise again.

One more scheduled inpatient stay to go!

***

For any local scrapbookers out there (or anyone that wants to learn), my friend Nicole is hosting "Crop For A Cause" on May 5 in Franklin, MA. It's a full day scrapbooking crop, and all proceeds will benefit The Jimmy Fund, in Hunter's honor. There will be make & takes, door prizes, demos and classes, and the entry cost includes breakfast, lunch, and a gift bag from Stampin' Up! It should be a fun day.

Please contact Nicole or me if you are interested in registering.

Tuesday, April 17, 2007 5:43 PM EDT

We packed up and headed into clinic today to get counts, to see if we are going to get admitted for chemo tomorrow.

Clinic today was pretty fun for the girls. It was the first time Hayley's been in a while. Since she's in first grade, she's usually in school when we go. Today someone dropped off a donation of 3 boxes full of brand new Mary Kate and Ashley clothing. The 5 little girls in clinic that were between sizes 6/6X and 10/12 had a field day going through the clothing and picking stuff out - it was like a miniature version of Filene's Basement - without the catfights. :) Hayley and Hunter came home and played Fashion Show with their new outfits.

Anyway, about Hunter's counts - nobody was more surprised than me to find out that Hunter's platelets have bounced back to 100! This means we are a go for our admission for high dose Ara-C tomorrow.

It was a year ago today that I ran the Boston Marathon for Dana Farber. And the following day we were admitted for Hunter's first round of high dose Ara-C. That means it will be a year to the day between her first admission for Ara-C and her last.

Her LAST round of Ara-C... that feels so good to say! While I'm certainly not excited to spend a few days in the hospital (and even less excited about what that nastiness does to her little body), this is a big milestone because it means that after this, there will be only one more scheduled inpatient stay for chemo left. (Still well over a year of treatment to go - but we'll only be inpatient if she gets a fever.)

Just keep swimming!!

Monday, April 16, 2007 7:39 PM CDT

The day started out questionably when we woke up to find that the storms overnight had left a very large pine tree across the bottom of our driveway along with a wire down in our front yard.


We lucked out bigtime when our town DPW came along with chainsaws and a wood chipper and cleared out our driveway. We were able to leave just in time to get to Mile 25 to see some of the elite runners go by, and then one of the first Dana Farber runners, our awesome Patient Partner, my friend, Laurie.

She stopped and gave me a huge hug and handed me a little silver coin that is engraved on one side with an angel and "Watching Over Hunter" on one side, and "HUNTER, Each day and all night through, a Guardian Angel is watching over you" on the other.

Laurie held onto that coin for 25 miles through some of the nastiest weather the Boston Marathon runners have ever faced. That coin is going to go everywhere with us from now on.

Oh, and Laurie managed to finish in 3:20:13, which is an incredible pace of 7:39 per mile!

GO LAURIE GO!!!!!


Thank you so much to Laurie and all of the DFMC runners - you guys ROCK.



Sunday, April 15, 2007 7:39 PM CDT

We went to the Dana Farber Marathon Challenge pre-race Pasta Party tonight. Crazy as it sounds considering the rain and the wind predicted for tomorrow (and the whole being 5 months pregnant thing), I was getting a little jealous that I'll be watching instead of running this year!

When we arrived to check in, the first Patient Partner poster we saw was Matty's. As his mom said to me later, "of course he was first, he's the King!" :) King Matty presided in his place of honor over the check-in table for the Patient Partners.


Hayley checking out Hunter's poster - we loved the decorations!!


They gave out megaphones for the DFMC cheering section again this year. We need to work on the girls' technique a bit. Also, get them to yell, "Go Laurie!" instead of, "Go Navy, Beat Army!"


Laurie and Hunter got matching DFMC medals - Hunter was very proud of hers - I think she thinks she already won the marathon.


Best of luck to Laurie and all the other DFMC runners tomorrow - we'll be rooting for you!

Friday, April 13, 2007 3:44 PM EDT

We went in to clinic on Monday for counts to see if we would be admitted for Hunter's last round of high dose Ara-C this week. As expected, she wasn't ready. Her ANC and platelets were too low, and her hematocrit was also low. She needed a red blood cell transfusion, but since it was getting late, we arranged to come back on Tuesday for the blood.

Tuesday before starting her transfusion, we drew labs again, just so we would know which way her counts were going. Unfortunately, they were down - wrong direction!

We were back at clinic again today. Her platelets were about the same and her ANC was lower than on Tuesday, but with 35 monocytes it looks like it's about to turn around. We'll try again for admission next Wednesday.

This coming Monday, April 16th, is Marathon Day. Unfortunately the weather forecast is calling for 2-4" of rain and gale force winds! Running 26.2 miles in that kind of weather shows real dedication. We're hoping to be at Mile 25 to cheer on our friend Laurie, who is running in Hunter's honor this year.

There was an article in the Winter 2007 edition of Dana-Farber's Impact magazine about the Taco Bell fundraiser that Hunter was a part of. They raised $105,000! The article is on Page 5.

Friday, April 6, 2007 10:03 PM EDT

We did make it out to Bugaboo Creek tonight - although I'm not sure what the heck I was thinking when I promised Hunter we'd go to a steak house on Good Friday! Oops.

My friend Stacey R. sent the girls a big box of goodies this week and included an Easter hat and gloves for each of them. Hunter loved her hat and gloves so much, she wore them to bed on Wednesday night, to school on Thursday, and she and Hayley wore them to dinner tonight. They were definitely the most elegant diners in the restaurant. (And yes... she ordered the Kraft Mac & Cheese for dinner. I'm thinking the loss we took on overpaying for the Mac & Cheese might have been recovered in the unlimited refills of chocolate milk, though.)

Here are a couple of photos of her highness in her Easter finery. Unfortunately they were taken with my cell phone, but you get the idea. Thanks so much Stacey!





Happy Easter, everyone. :)


Tuesday, April 3, 2007 6:48 PM CDT

Hunter's platelets were up to 70 today!! She didn't quite make the cutoff of 75 for chemo but after discussing with our attending doc, we both agreed to go forward with chemo today rather than waiting a few days, since she's clearly on the rebound.

Of course that means no bone marrow aspirate this week, which is a very good thing, for several reasons. :)

Her cough is much better and I'm jealous - my stinking cough went away for a few days and then replaced itself with a raging sinus infection. I wish I could get myself an infusion of IVIG at this point, I'm sick of being sick! (...says the big old baby of a mama to the kid that's been on chemo for well over 3 years now. Feel free to roll your eyes.)

When the fellow we saw today looked at Hunter's eardrums, she said they looked a little 'bulgy' and gave us the option of putting her on Amoxicillin to ward off a potential ear infection. Even though she doesn't technically have an EI yet, I decided it would be better to be on the safe side rather than end up inpatient for an EI and a fever in a few days when her counts drop from the chemo. So she gets one more delicious med to take for the next 10 days. Some day I am going to add up how many doses of oral meds she's had over the course of her treatment. I know for a fact it's well over 1,000 with just her Atovaquone alone!

Hunter got Etoposide, Cyclophosphamide and Mesna today. She was well hydrated this morning so we were able to start chemo early and we were home by 4:45, which is a record for us with that chemo cocktail. Usually we are rolling in the driveway right around her 7:30 bedtime on Etop/CPM/Mesna days. With this chemo down there is exactly one more 6 week cycle of Big Scary Chemo to go. (Until Huge Scary Cranial Radiation, but I'm still trying not to think too much about that right now.)

It should be a few days before the chemo crashes her counts again so we're actually planning on sending her to preschool this week. Tomorrow is school picture day and I'm beyond excited that she will be there to have her photo taken with the rest of her class!

She's been asking to go out to dinner at "the moose restaurant" a.k.a. Bugaboo Creek. (Where she will no doubt order the exact same Kraft Macaroni & Cheese Dinner that I can make here for 99 cents instead of $5.99, but what fun is THAT?) She wanted to go there for lunch and I told her that since Hayley would be in school and Daddy would be at work, maybe we should wait for dinner on a night that they both could join us. She said to me, "good thinking Mommy, that would be more family traditional." Sometimes I can't believe this kid is really only 4 years old! :)

Love,
Katie

Friday, March 30, 2007 8:11 PM EDT

Today turned out to be a very looong clinic day. Hunter's platelets were down a bit, to 39, so no chemo again for her.

Our regular Nurse Practitioner was out today and we saw someone else. That NP came in to see us around 2PM (we'd been there since 10AM - sigh...) and recommended that Hunter get an IVIG infusion.

She's never had IVIG before but I'd read up on it last time we had trouble with her platelet counts, and it sounded like a good idea to me. She actually got a higher dosage so hopefully the results will be twofold - 1) the gammaglobulin should help her to kick this stinking flu bug out of her body once and for all, and 2) it should help get her platelet count up.

Unfortunately the IVIG infusion takes 3.5 hours, so by the time I OK'd it and we got going, we knew we'd be at clinic until 6PM. And then home in traffic. But whatever - if the stuff helps her it's totally worth it.

If her counts are still too low for chemo next week, the NP we saw is planning to send us for a bone marrow aspirate to rule out a relapse.

At this point I want to see what her counts actually look like before I agree to that one. It's a painful procedure and knowing her history, and the fact that she is still getting over the flu, I think it might be a little premature to put her through it just yet.

I'll be hoping and praying that her counts are good enough for chemo on Tuesday so that the bone marrow aspirate isn't even an issue.

Thursday, March 29, 2007 7:50 PM EDT

Hunter's platelets were 44 yesterday - whether she's recovering or just holding onto the transfusion she got on Monday, that's a good thing. We will check her again tomorrow to see what her platelets are doing.

I doubt she'll be high enough for chemo yet but I'll feel better just knowing what her counts look like going into the weekend. Her cough actually sounds worse again tonight so I'm hoping she's not coming down with some new nastiness.

Matty's services yesterday and today were amazing. We waited for an hour and a half in line to see Sandy and Johnny at the wake last night - it was packed.

Today Matty got a presidential motorcade escort to and from the church. The kids from his school lined the sidewalks in front of the church with signs for the Dubuc family. The Mass was packed, and I think Sandy said there were 180 cars (!) that went to the graveside services afterwards - seriously, have you ever heard of such a huge funeral procession?! Matty managed to touch everyone.

Nearly everyone that went to the graveside brought balloons - blue ones or Spongebob ones - and released them into the sky for Matty. It was an awesome sight watching the balloons fly.

I borrowed this from his site:


The services were a very fitting tribute to Matty and his wonderful family.

My thoughts and prayers are with them as they begin this new chapter of their lives without the physical presence of Matty by their side.

Tuesday, March 27, 2007 10:29 PM EDT

Hunter's platelets were a very scary 6 yesterday. To give you a frame of reference, the first time through chemo, she rarely dropped out of the 400's. And yesterday she was at 6 - this is a new record low for her, and one I'd be very happy not to come close to again. Her little legs are basically one big bruise, she has random petechiae all over (even in her left EYE!), and she has abrasions on her chest from the dressing over her port yesterday.

When her platelets get this low, I am scared to death to take her for a ride in the car, knowing that even a minor accident could be a big problem for her. I just want to cover her in bubble wrap and make her sit still for a week - unfortunately she doesn't get it and would much rather be outside riding her bike on the paved driveway!

Needless to say, she needed a transfusion yesterday and we are due to go back to clinic tomorrow, probably for another bag of platelets.

Her counts are not surprising considering her reaction to the high dose methotrexate last time around, and knowing she's still trying to kick that flu virus out of her body, but it's still frustrating and frightening that she's SOOOO low. One more reason why Big Scary Chemo is really scary and I can't wait until she's done.

Anyway, we are off to clinic tomorrow and then in the afternoon when we get home, my mom is coming to stay with the girls so that Mike and I can go to Matty's wake.

There was an amazing article in the Lowell Sun today about Matty and his family. Grab a tissue before you read it.

Monday, March 26, 2007 6:51 AM CDT

I just woke up to the news that our beloved Matty earned his angel wings last night. Rest in peace sweet Matty. Our thoughts and prayers are with the Dubuc family. We love you guys.

Thursday, March 22, 2007 3:16 PM EDT

Hunter is HOME!! She needed blood and platelets this morning (platelets had dropped to 15!) and our awesome nurse Susanne made it all happen as quickly as possible, and got her discharged as soon as she finished her transfusions. :)

About an hour after Hunter and Mike got home, I got a call from Children's that one of her cultures came back positive for influenza. Since we've all had the flu shot, she and I must have somehow managed to come down with one of the strains that's not covered by the vaccine.

Fortunately, the doctor said they wouldn't treat her any differently knowing now that she has/had influenza, and we just need to keep her hydrated until she kicks this thing.

After the little scare she gave us, I'm just very happy to have her home so quickly - I never knew how happy I could be to give up my 'grown-up' TV shows and settle in for an afternoon of SpongeBob. :)

Wednesday, March 21, 2007 10:39 PM EDT

Hunter is still in the ICU but her vitals have been stable all day. They are going to be moving her to 6N as soon as they have the room ready for her. If she remains stable we could even be looking at discharge tomorrow evening.

Thank you for all the thoughts and prayers!

Wednesday, March 21, 2007 9:19 AM EDT

When Mike and Hunter got to the ER last night, her heartrate was unusually high and her fever came back after a dose of Tylenol.

Then her blood pressure dropped and they were concerned enough that they decided to admit her for observation. She spent the night in the ICU where they kept an eye on her HR and BP.

She is still in the ICU at the moment but seems to be doing better today than she was last night.

Tuesday, March 20, 2007 7:39 PM EDT

Hunter and I have both had a nasty cough all day. Tonight she spiked a fever of 39.8C (103.6F) which is an automatic trip to the ER for her.

Since I'm sick too, Mike just took her. Keeping our fingers crossed that her ANC is high enough to just get a dose of antibiotics and come home. If she's neutropenic she'll be admitted for at least the next 48 hours.

Tuesday, March 20, 2007 1:38 PM EDT

One year ago today, Hunter had her port taken out and had what we hoped would be her final lumbar puncture and bone marrow aspirate ever.

We had no sooner walked in the door at home after a full day in the hospital, when Dr. Jason called. He said, "I wish I had good news for you." There was leukemia in her spinal fluid. And just like that, the two years of chemo Hunter had already gone through became just the beginning of her journey.

The next day we went in to clinic, where Hunter received another LP with chemo. And I got my first look at the proposed treatment plan for the next two years. I vividly remember reading about the first year of chemo she would have to endure and feeling like all the blood had rushed out of my face when I saw what she was up against.

A year later, she's finished 43 of 50 weeks of Big Scary Chemo. We've been inpatient 20 times. She's had countless blood and platelet transfusions, and she's been neutropenic for most of the year.

And miraculously, she's doing well. We're not there yet, and after she finishes Big Scary Chemo, there's cranial radiation - something I try not to think too much about, because frankly, everything about it terrifies me. The year of chemo following radiation is no picnic, either, but compared to what she's been through, it's not quite as big or quite as scary. And I'm grateful for the fact that she still has a good chance to beat this rotten disease - a lot of our friends with other kinds of cancer aren't so lucky.

We have a lot to be thankful for.

Friday, March 16, 2007 8:38 PM EDT

No chemo for Hunter today. But in a way it worked out better all around. There was a large snowstorm predicted here that was supposed to (and did) make the afternoon commute a mess.

Hunter, Taylor and I got up extra early and got into the Jimmy Fund a little after 8:00 AM. It was soooo quiet there today, especially at that time of the morning. We got vitals done and accessed by 8:30, and we were in a bed getting prehydration before 9:00.

As it turned out, Hunter's platelets were down to 25 and so she got a transfusion. Technically she doesn't require one unless they are under 20 but since she had the weird bruises on her legs and some petichiae on her stomach I really didn't want to chance waiting and ending up in the ER over the weekend.

Since her platelets were so low, she wasn't able to get chemo, so we got out of clinic by 12:30, and got home about 20 minutes before the roads started to get really bad.

Mike got home early too and he and the girls were able to enjoy some time outside in the snow (first time this year there's been enough to play in!)

We go back on Tuesday (the one year crapiversary of her relapse) to try again for chemo, but based on her last cycle I'll be surprised if her platelets are high enough by then. She seems to be needing a few weeks to recover from the high dose methotrexate lately.

Happy St. Patrick's Day - somebody lift a pint of Guinness for me, since I can't have one for another 20 weeks. :) Oh, by the way, looks like it's another girl. I am the luckiest mom in the entire world. :) :) :)

Thursday, March 15, 2007 2:32 PM EDT

We were supposed to go to clinic yesterday for a full day of chemo, but I woke up with the stomach bug first thing in the morning and I was completely USELESS all day long. So we moved clinic day to Friday, with the idea that next week should be a week off, and we'll get admitted on 3/27 for Hunter's LAST round of high-dose Ara-C.

I'm really just as glad that we're not going to be in the hospital on 3/20 as originally planned, because that will be the one year crapiversary of Hunter's relapse, and the hospital is about the last place I think I want to be that day.

Hunter actually got up in the middle of the night last night and vomited, but she's been fine today. So if she has the tummy bug that the rest of us have had, she seems to have shaken it a lot quicker than we all did. Once again, the kid on chemo somehow manages to be the healthiest one in the house!

Actually, I'm hoping she'll even be able to get chemo tomorrow as she took a nap today and has some mystery bruising on her legs, which makes me think she might well need both blood and platelets.

Please keep our friends, Mary, Matty, and Matthew in your thoughts and prayers. Mary and Matthew both have hepatoblastoma like Matty, and they both recently relapsed. As you know if you have followed Matty's story, hepato relapses are particularly mean and nasty to deal with.

Monday, March 12, 2007 10:56 PM EDT

Hunter is home. :) Mike stayed with her Saturday night as I was feeling kind of crummy.

She cleared her methotrexate yesterday afternoon. It was a late night for her though as she also needed a red blood cell transfusion. They can't start the RBC's until they can unhook her from the sodium bicarb IV, and they can't unhook her from the bicarb until they know she's cleared. And then the RBC's take about 3 hours to run. So Hunter and Mike got home around 8PM last night.

Right after they got home, Mike got sick and vomited. Then an hour later, it was Hayley's turn. Today they both were feeling really lousy (first time Mike has called in sick in the 14 years I've known him!) and I still wasn't quite myself yet. Taylor seemed fine but the funny thing was that one of the two healthiest people in the house today was the child on chemo!

Thank you so much to Julia for the 'Cheetah Girls' blanket that you left on 6N for Hunter - and thank you Cassie for the new pug Webkinz that you dropped off here! Hunter named her Jewely. Not Julie, but Jewely as in 'covered in jewels.' :)

Oh, and Deb - not only did we have the A-side of the room, but we were in 617A with the giant ridiculous pillar that sticks into the sleeping space, LOL.

But we can't complain too much about being on the A-side, because we have twenty inpatient stays down since 3/21/2006, and just two more scheduled stays to go. 60 weeks of treatment remaining. Just keep swimming...

Thursday, March 8, 2007 11:37 PM EST

We are in the hospital and Hunter is getting her methotrexate infusion. She was feeling great all day, ate like a piglet and was talking nonstop about random things like how maple syrup goes right to her brain. (If you saw the sugar high she was on after she ate pancakes on the way into clinic you'd probably understand the maple syrup on the brain thing.)

It was good timing for her to be in such a fun mood, because the Jimmy Fund photographer was in clinic taking Pedal Partner pictures for the Pan-Mass Challenge. Our friends Dennis and Lori are riding again, and my brothers Jon and Matt will also be riding for the first time this year.

So Hunter was fine until about 8:30 tonight when she started complaining that her head hurt and then a few minutes later, proceeded to vomit all over the place.

When she finished being sick she was crying ("I HATE puking!") but as I was changing her pajamas she caught sight of some new Puppy In My Pocket toys I'd brought for her. The tears stopped immediately, and she started introducing her nurse to all of the puppies by name.

About 60 seconds later she started wailing again and I couldn't figure out why until I realized that her pug Webkinz had been in the wrong place at the wrong time during the puking incident. She was upset that "Abby" was all messed up. I tried comforting her by telling her that after we finished cleaning her up and changing the bed linens, that I would give Abby a bath. Our nurse gave me a weird look and it didn't occur to me until I was washing the Webkinz that our nurse's name is also Abby.

Anyway, Abby (the pug toy, not the nurse) had a successful bath in the sink, we got some more anti-nausea meds into Hunter, and things have been quiet for the last few hours. We finish up the infusion around 2PM tomorrow and then we wait a day or two for her to clear the methotrexate so we can go home.

Wednesday, February 28, 2007 11:47 AM CST

Hunter's lumbar puncture went pretty well yesterday. She was funny, very chatty in the procedure room, and then as soon as the sedation kicked in, she grabbed her stuffed Heffalump (thanks Renee!), closed her eyes, and rolled over into the fetal position on her side - which is the exact position she needs to be in for the procedure. I guess after somewhere around 30 of these things in the last three years she pretty much knows what to do.

Our NP called today to let us know that the first look at the spinal fluid appears perfect. Pathology still has to take a look at it, but that's certainly good news.

Hunter recovered pretty quickly from the LP and even made it in to preschool today. Judging from the amount of artwork the kid generated in the 2.5 hours she was there, she enjoyed herself!

Hunter and Taylor at clinic on Monday. Thanks again to Stacey and Caroline for all of the Hannas - see, I really wasn't kidding when I said Hunter wears them EVERY day!! :)



We're scheduled to go back inpatient a week from tomorrow for a few days for high-dose methotrexate. Since she relapsed March 20, 2006, that's nineteen hospital admissions down, and just three more scheduled inpatient stays to go. Then comes cranial radiation and one more year of chemo... Just keep swimming...

Monday, February 26, 2007 8:30 PM EST

We ended up in clinic today for a blood draw and counts. (Hunter's getting a lumbar puncture tomorrow morning and has to have labs drawn ahead of time before anesthesiology will touch her.)

We had planned on getting labs drawn here at home but it seems I have thoroughly confused our home health care company by telling them that we only want them to send us a nurse when we actually ASK for one.

Last week I told them we didn't need a nurse on Monday (we were in the hospital!) and apparently they interpreted that to mean, "never come back on any Monday, even if we ask you to..."

But that's not very important because we got to see a bunch of our very favorite people today at clinic and I was very glad we ended up there today.

We were so happy to see our favorite favorite favorite child life volunteer, Annette. Moving from Monday to Tuesday wouldn't have been nearly so hard if we could have brought Annette with us to Tuesdays too!

Matty was at clinic to get some IV fluids as he's been feeling pretty crummy lately. His mom, Sandra, was handing out little gifts to the CMCC moms she saw - little packages of tissues that have, "I don't remember signing up for this" printed on them. She had us all cracking up - how true is that?!

We also saw Jake's mom, Kim (glad you guys got to go home today!!); Michael and his mom, Gayle; and Mary's mom, Kristina. Mary has hepatoblastoma like Matty does and Kristina had a really difficult discussion with Mary's oncologist today. Mary's AFP keeps rising and they don't yet know where the cancer is, but it's in her little body somewhere. Bottom line is, CANCER SUCKS!!

To all the cool moms (and dads) out there, I wish we could all just do THIS to cancer:





Love,
Katie

Sunday, February 25, 2007 9:55 PM EST

Today I attended the first official meeting of the CCMC - Cool Cancer Moms Club. Brunch and talk (aka cheap therapy) with some of the other moms from clinic. Unfortunately two of our founding members, Sandra (Matty's mom) and Kristina (Mary's mom) couldn't make it, but we're looking forward to another 'meeting' next month. :)

Here's the CCMC post-brunch. Kira's mom, Renee; Jake's mom, Kim; Christina's mom, Nicole; and me.



And for whatever it's worth, I'm not usually that fat, I'm 17 weeks pregnant. :)

Katie

Tuesday, February 20, 2007 2:23 PM EST

Today was the day that Hunter's ANC finally got that GCSF-fueled rocket boost. We didn't even wait around for the differential to come back as her white count was over 9 today at clinic (up from .3 a few days ago.)

Tomorrow will be her last G shot for this cycle, and even better, she will be able to go to preschool for the first time since November! She's very excited about it, as am I. It's amazing how good it feels to have her do something 'normal' for a change. I don't think we'll ever take normal stuff for granted with her.

Here's Hunter at the hospital yesterday with her inpatient-meal-of-choice this time around - pancakes and chocolate syrup. Thanks to Mrs. Buswell's and Mrs. Reynolds' classes for the BEAUTIFUL quilt!



Matty is in the hospital, please keep him in your thoughts and prayers.

Monday, February 19, 2007 6:08 PM EST

Hunter's ANC was up to 330 this morning with 45 monos - still neutropenic but enough to get us discharged. And the high monos mean that her ANC is rising.

Clinic tomorrow - possibly needing another platelet transfusion based on how quickly they've come down since her transfusion on Friday. But we are home and home is good. :)

Sunday, February 18, 2007 2:12 PM EST

It's been almost 48 hours without a fever but Hunter's ANC is still only at 90, so we're here for at least another day.

She feels fine and since she's only on antibiotics every 6 hours, she's able to be unhooked from her IV pole most of the time, which is nice. We spent some time in the playroom today, but Sunday is a big day for visitors around here and it got crowded quickly. With an ANC of 90 that makes me paranoid, so we ended up coming back to our room with a stash of toys and DVD's.

She's happily playing Balloon Lagoon and watching Spongebob at the moment, so although we'd rather be home, the hospital is not such a bad place to be right now. (At least she's not getting chemo!) :)

Hoping for a nice jump in the ANC and a ticket home tomorrow - those G shots are about due to kick in.

Friday, February 16, 2007 7:08 PM CST

Clinic today, Hunter needed both red blood and platelets, as expected. Her ANC was down from Tuesday (130 to 80) but since she had no monos on Tuesday and she had 14 today, it looks like she possibly hit her nadir some time during the 72 hours between Tuesday morning and this morning, and that her counts are on their way back up.

We got home tonight at 6:00, and at 7:00, she spiked a fever of 39.1C (102F). With an ANC of 80, that's an automatic 48 hour stay inpatient, so at 7:30 tonight, she and Mike just headed off to the ER at Children's to be admitted. My mom will come here tomorrow and I'll switch off hospital duty with Mike in the afternoon.

This stay for fever and neutropenia was not unexpected, but just another reason why I'm glad we've only got one more round of Ara-C left to go.

Thank you to everyone that continues to keep Matty and his family in your thoughts and prayers.

Please remember Alexia as well, they got some very scary news today.

Cancer sucks.

Wednesday, February 14, 2007 2:19 PM EST

We went to clinic yesterday and I was fully prepared for Hunter to need both blood and platelets. Her skin is very pale and ashy, and she has a mystery bruise on her neck.

My mom's intuition actually failed me for a change though, as her hematocrit was over 29 - nowhere near transfusion level, and her platelets were 40, which is getting low but not quite to transfusion level either. I was so surprised I actually asked our nurse, half seriously, if her blood could have gotten mixed up with some other kid!

We go back in on Friday for counts and any transfusions she needs. We are 8 days out from the start of the Ara-C, which is usually right about when her counts start to crash.

So far we've avoided fevers by doing pretty much nothing but sitting in the house all day, and having Hayley use lots of Purell when she comes home from school. (She still managed to give Taylor a cold but Hunter miraculously hasn't picked it up yet.)

Once Hunter's ANC gets to 0 though, all the Purell in the world might not stop her from getting sick, so we're keeping our fingers and toes crossed and counting on those nasty GCSF shots to do their thing.

Today was supposed to be a snow day but it turned into more of a nasty freezing rain/slush day. Hayley has the day off from school and everyone is getting a little stir crazy.

Thanks so much to our friend Sarah who sent the girls a surprise package today with new goodies in it to keep the girls busy - Sarah, you couldn't have timed it any better - you may just have saved my sanity for one more precious day. :)

6:54 PM - Hunter just woke up from a 30 minute nap. She *will* need blood on Friday, I'm sure.

Thursday, February 8, 2007 5:32 PM EST

We are HOME!! A good 48 hours earlier than I thought we'd be. This is the 5th time Hunter's gotten high dose Ara-C and for the first time, she did not spike a fever with it. No fever = no mandatory 48 hour stay for antibiotics and observation - so we are home.

We came home armed with a few different meds that are new to me here at home - we've never been out after the Ara-C this fast so I'm used to having the nurses at Children's take care of all of this stuff!

But we've got Ativan, Reglan, Zofran, Benadryl, and Hunter's despised dexamethasone eye drops that she gets 4x/day for the next 2 days.

Tomorrow we start the GCSF shots again to help shorten the period of time she's dealing with a zero ANC.

And now we wait for that ANC to crash. I'm expecting we'll end up back inpatient within the next week or so for fever and neutropenia when that happens.

Hayley was home sick from school for the first time in her life this week with that stomach bug everyone in the world seems to be getting. I hope that Purell and a lot of crossed fingers and toes will help keep Hunter from getting it too.

Tuesday, February 6, 2007 5:40 PM CST

The G shots worked! Hunter's ANC was up to 1130 today so we were admitted this afternoon. She's had her first dose of Ara-C with 3 more to go over the next 48 hours.

While I despise the Ara-C and know that she's going to end up feeling pretty lousy soon, I'm so glad that we're finally making some progress again.

At the same time, I'm very sad today because Matty's family got some very bad news yesterday. I so hate this crappy disease.

Katie

Saturday, February 3, 2007 11:18 AM EST

Yesterday I spoke with clinic and our attending wants to try 3 days of GCSF shots to see if that kick starts her marrow.

I've given her the first two shots and tomorrow will be the last, so she'll get 48 hours off to see what her marrow does on its own. Then we'll head to clinic on Tuesday and see how her counts look. With any luck we'll get admitted for the Ara-C.

Please keep our friends Matty and Mary in your thoughts, they both got bad news on their AFP's this week.

Thursday, February 1, 2007 4:37 PM CST

We had a nurse come out to draw labs again today, hoping Hunter's ANC would be up to 750 and she could be admitted for the Ara-C tomorrow.

Talked to clinic this afternoon, and while her platelets are still fine, her ANC is still the pits, so no chemo for her tomorrow either.



I've run out of ways to say I am worried and frustrated. In the last 6.5 weeks she's had chemo exactly once.

Wednesday, January 31, 2007 12:54 PM EST

Stinking, rotten cancer. Our little friend Alexia has just relapsed, nearly a year post-transplant. She and Baby Donovan were both at Duke at the same time, both being transplanted for relapsed Infant ALL. Please send your thoughts and prayers to Alexia's family, as they are obviously devastated right now.

Monday, January 29, 2007 3:35 PM EST

We had labs drawn here at home this morning and I just heard back from our nurse at clinic - Hunter's platelets have gone up to 76 but she's still neutropenic - so no admission for chemo tomorrow.

I guess given her history of late, this is a better situation than having a high ANC and low platelets - her ANC usually recovers a lot faster than her platelets do.

Tomorrow I'll talk to our nurse practitioner and find out what the plan is for the rest of the week. I hope at the very least this means that she'll be good to go in for her Ara-C in a week.

Oh, by the way, there's a new feature where you have to enter a 4 digit code when you sign the guestbook. Spammers decided that Hunter's guestbook would be a good place to post their garbage recently and that should help get rid of them. I apologize for the extra step but I really didn't want to be looking at ads for Viagra every time I opened up her guestbook!

Friday, January 26, 2007 8:09 PM EST

Back to the JFC this morning for counts and to make sure she didn't need a platelet transfusion. I was pretty sure she wouldn't, I can usually tell when her platelets are low and she didn't have any of the tell-tale signs today.

The good news is that she didn't need platelets. Bad news is that her counts are down from Tuesday. Her platelets dropped a bit from 48 to 41, and her ANC went from 480 to 260.

That wouldn't be overly concerning if it weren't for the fact that it's been 11 days since she got chemo and her counts are still not recovering. The chance that she'll be ready for high dose Ara-C on Tuesday is pretty slim at this point, since her marrow hasn't been bouncing back the way it used to lately.

If you'd told me before any of her other Ara-C cycles that I'd be chomping at the bit to get in and get the chemo done, I'd have laughed you out of the room. But all these delays are really starting to get to me. I'm afraid of what it means for completing the rest of her treatment, and I'm afraid of what it means for the chances of her relapsing again.

I guess the other good news is that she feels great and has plenty of energy. She's even got cute little pink cheeks (thanks to the transfusion on Tuesday) and some peach fuzz growing on her head again. I'm trying to enjoy those things and not get bogged down in the worries, but days like today it's honestly not easy.

Anyway, we could use a visit from both the Platelet Fairy and the ANC Fairy, so if you see either one of them, please send them our way.

Tuesday, January 23, 2007 7:04 PM CST

I thought I'd be really smart yesterday and have Hunter's counts done by a visiting nurse. That way we would know ahead of time if she was good to go for her admission for high dose Ara-C. ANC has to be 750 and platelets 75. Counts came back yesterday afternoon and her ANC was 767 but platelets were only 61, so we knew she was getting another week off chemo. Her hematocrit was also low at 22, so we still had to go in to Boston today for a red blood transfusion.

At clinic they decided to do another CBC, just to get an idea of whether her counts were on their way down or on their way back up. I was pretty shocked when the CBC came back and her platelets had dropped to 48 and ANC to 480.

We'll go back in on Friday again for counts as she may will need a platelet transfusion if they continue to drop like that.

The cyclophosphamide and etoposide she got last week always crash her counts so none of this is unexpected, it's just really frustrating. We only have 12 more weeks of Big Scary Chemo left before radiation and Maintenance, I just want to get going and get this stinking stuff over with already. I hate just spinning our wheels and making no progress toward the end! And I am worried that after 3 straight years of chemo, Hunter's bone marrow is just too tired and her recovery from chemo will continue to be sluggish at best, prolonging everything even further.

I'd say, "just keep swimming" but at this point she's doing everything she can to just tread water.

More friends from clinic in need of thoughts and prayers - Mary, who got her AFP back today and it's gone up yet again. They know there is cancer in her body, now they have to find it so they can treat it. Hepatoblastoma is a mean and sneaky cancer.

Lina, who's dealing with a lousy skin reaction from GVHD post-transplant.

Tate, who's spending her first days on 6 North, getting started on chemo again for her relapse.

And of course Donovan's family. As much as it hurts that the Colts smacked down the Patriots on Sunday, I am rooting hard for the boys in blue to win it all for Donovan in 2 weeks. Something tells me Donny had something to do with that game-ending interception that Tom Brady threw the other night.

Love,
Katie

Sunday, January 21, 2007 10:01 AM EST

Baby Donovan earned his angel wings at 9:00 last night. My thoughts and prayers are with Melissa, Darren, Dylan, and their family.

Wednesday, January 17, 2007 12:59 PM EST

The Red Sox office sent me these photos.

Hunter and David Pauley:


Hunter and Craig Hansen (she's holding up the rocketship picture):



Tuesday, January 16, 2007 9:03 PM EST

FINALLY... I am so happy to report that for the first time since before Christmas, Hunter's counts were high enough to resume chemo. Despite being off chemo for nearly 4 weeks, her counts were still not stellar, with platelets only at 85 and her hematocrit at 27. But it was enough to move forward and now she is officially halfway through this rotten, lousy, horrible phase of chemo, with 12 weeks of treatment to go before radiation and then 52 weeks of maintenance chemo.

Today the Red Sox rookies came to visit the kids at clinic. I think there were about a dozen of them (and oh my gosh they were so YOUNG! I felt about a thousand years old.) They were really cool, they gave Hunter autographed photos and they all signed a baseball for her. She was chatting them all up too.

David Pauley, rookie pitcher: I like your drawing, what's that a picture of?
Hunter: A rocketship.
David: Oh cool! Where is it going?
Hunter (with a 'duh' look on her face): Home, to hang on the fridge!

Apparently Jerry Remy (retired player and current commentator - snubbed by Hunter) and Wally (Green Monster mascot - snubbed by Hunter) are not as interesting as a bunch of handsome young players are. I may need to watch this child carefully in the future!

This weekend we were so happy to see Hunter's wonderful-and-very-much-missed-since-moving-to-DC Dr. Jason, and his awesome wife Shannon, who were in town for a visit. We had brunch with them on Sunday morning and Hunter was SO excited. She was very chatty all through the meal and then when we went to take pictures she clammed up and refused to smile, little stinker.

Hunter being a mope (outside of Tiffany, no less - I didn't know it was even possible to mope when you're that close to little blue box nirvana):


Taylor, Shannon, Mike, Hunter, Hayley's American Girl (who is coincidently also named Shannon) Dr. Jason and Hayley:


And Hunter finally being her true self, when Dr. Jason did the "I Pinch" gig with her:


So all is well in Hunter world right now.

I wish I could say the same for our dear little friend Donovan. His parents got news that no parent should have to hear today, and my heart just hurts for them all right now.

Thanks as always for checking in.

Love,
Katie

Friday, January 12, 2007 6:45 PM EST

This girl has some seriously tired bone marrow. Platelets were only up to 64 today. Still going in the right direction, but at a snail's pace. Since she's gone from 34 to 44 to 54 to 64, I expect that on Tuesday she'll be at 74, which is enough for her to get chemo. I actually tried to make a case for starting chemo today but I lost.

As much as I hate the stuff, it's so nerve-wracking knowing that she hasn't had any chemo since just before Christmas. Our NP said that on Tuesday we will treat her no matter what.

It's been a tough week for some of our friends, especially our little buddy from clinic, Tate. Tate is a few weeks older than Hunter and they were diagnosed a month apart from each other. She finished treatment in December 2005 and yesterday they found out that she's relapsed in her marrow. Please keep Tate's family in your thoughts and prayers as I know their heads are spinning right now.

My friend Mike's wife Mackenzie is also beginning a battle with Stage IV pancreatic/gastric cancer. Please keep them in your prayers.

I just found out tonight that our friend Lance passed away on December 28th. Tina, you guys are in our thoughts and prayers.

And finally Baby Donovan. He is fighting fevers and those stinking blasts keep rising every time his counts come up.



Tuesday, January 9, 2007 5:11 PM EST

Attempt #4 at Cyclophosphamide and Etoposide. Again, no go. Hunter's platelets were only up to 54. We go back in on Friday to try again. It's now been 3 weeks since her last chemo and I'm trying not to freak out about that. Unfortunately there's no quick fix to make her platelets come up (a transfusion wouldn't help since she has to be at 75 on her own, and 54 is not low enough to warrant a transfusion anyway.)

So fingers and toes crossed that she will rebound this week and we can get back to kicking some cancer butt on Friday.

I ended up cancelling the appt with GI this morning as the acidophilus and/or watered down Gatorade seem to have done the trick. Phew.




Friday, January 5, 2007 8:09 PM EST

Well, we tried. Got all the way to clinic this morning only to find out Hunter's platelets have still not recovered. They were 44 today, so no chemo for her. All of her other counts looked beautiful, just waiting for those darned platelets to come up.

We're still working on the pooping issues too... it's been about 3 months since the problems started. If things have not improved by Tuesday, we have an appointment with GI at Children's at 8:30 AM.

I've had some luck over the last week and a half with adding acidophilus into her med routine (on the theory that three years of antibiotics may well have destroyed much of the good bacteria in her gut) and with watering down her Gatorade. I'm keeping my fingers crossed that things continue to improve and that we don't need to get GI involved. It's just one more 'thing' for her that I'd rather avoid if possible.

The upside of yet another week off chemo is a lovely ANC, which will allow Hunter and the girls to head to the mall and Build-A-Bear with Grandma tomorrow to spend the gift certificates she gave them for Christmas. Hayley and Hunter have been plotting what kind of bears they'll be making all night long. :)

Tuesday, January 2, 2007 8:29 PM CST

Happy New Year! We had a great Christmas, the girls got spoiled rotten (lucky kids are the only little people amongst my family of five siblings!) We had a nice day with the family at my mom's house after spending Christmas morning at home.

On the 26th we went to clinic to get Cyclophosphamide and Etoposide but Hunter was neutropenic so she wasn't able to start chemo. We got a week off.

Taylor turned the big T-W-O on Sunday, New Year's Eve. It's hard to believe the little person who creates pretend microphones with her Magtastiks and demands "Tanna" (aka the Hannah Montana CD) so that she can sing and dance in the kitchen, is really the same tiny bit of a thing we brought home from the hospital two years ago!

The birthday girl:


Hannah Montana and her backup singers:
>

New Year's Day was uneventful and the girls and I spent the day in our pajamas eating birthday cake.

This morning we headed back in to clinic for another try at the Cyclophosphamide and Etoposide. I had some suspicions that we weren't going to make counts again because Hunter is covered with bruises. As it turns out, her platelets were 35 and they need to be 75 to start chemo. Our attending didn't want to go an entire week without chemo again so we'll try once more on Friday. If her counts are high enough to get chemo and that goes as planned, Hunter will have until a week from Tuesday to recover before going inpatient for round three of Ara-C.

Katie

Friday, December 22, 2006 11:18 AM EST

She cleared her methotrexate, Hunter's coming HOME!

Thursday, December 21, 2006 3:25 PM EST


Merry Christmas!!

Wednesday, December 20, 2006 8:35 AM CST

December 20, 2006 - Three years ago today, Mike and I sat in the Emergency Room here at Children's and listened to Dr. Jason tell us that Hunter had cancer. And the world as we knew it changed completely.

Hunter has now been on chemo for three long years. Two-thirds of her life. With another year and three months to go. It's a little eerie being here again on December 20. But I look at my little girl, bald, brave, smart, cute as heck, and know that she can do this. She's already gotten through so much.

We were admitted back to the hospital last night for another round of high dose methotrexate. When we got to clinic yesterday morning, it turned out her hematocrit was down to 21, which meant she needed a transfusion. By the time that was all done, it was almost 6PM, and we left clinic to come here and get admitted. Since she has to be prehydrated in order to start the chemo, we had to start hydration all over again when we got here. And then at 10PM when our nurse was getting ready to hang her chemo, she noticed that the methotrexate they'd sent over with us from clinic was supposed to be hung at 2PM, and it expired at 2PM today. Pharmacy made a new batch, but that delayed getting started on chemo until about 12AM this morning. So now, it's looking like Friday afternoon is most likely when we'll get to go home. We almost didn't make counts, as her ANC was only 700 and technically is supposed to be 750 to start. But she had 24 monos which means her counts are coming up, so our attending let us get started anyway.

This is our 16th and hopefully FINAL inpatient stay for 2006. Four more scheduled inpatient stays to go.

Thank you all so much for checking in on Hunter and our family. We appreciate every one of you. In case I don't get a chance to update again for a few days, we hope you have a happy holiday season, whatever holiday you may celebrate, and that you will all have a peaceful and HEALTHY new year.

Love,
Katie

Wednesday, December 13, 2006 4:55 PM EST

We went back into clinic on Monday to check counts, which were fine, yay! Back in again yesterday for Hunter's lumbar puncture.

The procedure went pretty well and she wasn't too nauseas afterward. She tends to try and bounce right out of the bed as soon as the procedure is done, and then she pays for it a little while later when she suddenly feels pukey.

To try and keep her horizontal and inactive for as long as possible, we got her a bed after she was done in the recovery room. She wolfed down a chocolate chip cookie and some Gatorade and then turned a little green and laid back down. After about half an hour her color looked much better and so we headed for home.

Today she feels fine. I've had three epidurals in my life and I remember feeling pretty achy afterwards for a few days. I don't know if it's youth or if she just really has a high tolerance for pain, because she's never once complained about her back after an LP.

Anyway, we now have a week off. Next Tuesday the 19th, we go into the hospital for high dose methotrexate. I'm hoping we'll be out on Friday or maybe even Thursday. Either way, it looks promising that we'll be spending Christmas at home this year. :)

Please don't forget Donovan and Matty, and our friend Lina, who had her transplant on Monday. Happy Re-Birthday Lina!


Saturday, December 9, 2006 2:05 PM EST

We got labs done at clinic yesterday and Hunter's counts are high enough that she's able to stop the G shots, yay!

We go back in on Monday for counts again and then she has a lumbar puncture scheduled for Tuesday morning.

It's Baby Donovan's 2nd birthday today! Happy Birthday Donny Boy!!

Wednesday, December 6, 2006 5:25 PM EST

After a very frustrating morning of phone calls between our Patient Care Coordinator at the hospital, CVS, and our insurance company, I finally gave up on Cigna and packed the girls up to head into clinic so Hunter could get her GCSF shot.

Two hours in the car for less than 60 seconds of treatment. Can I just say, !!

I called CVS on the way home and the approval had FINALLY gone through. I raced over to the pharmacy and picked up the GCSF ($2973 worth of it, yikes) before someone changed their mind!

So now tomorrow is a day off, and then Friday we go back in for counts, to see if we can discontinue the shots.

Tuesday, December 5, 2006 8:05 PM

The ANC Fairy came last night!! We woke up to an ANC of 830 and our Get Out Of Jail Free ticket!!

We got home at about 6:30, it has been SOOO nice just settling back in and being together as a family in our own home. We've spent 10 of the last 15 days inpatient so just having everyone here at home at the same time is a little treat right now. :)

Because of the e coli that was in Hunter's bloodstream, she will be on IV antibiotics for the next 10 days. Our home health company just delivered the pump and all the supplies.

If only our stupid, stupid insurance company were so on the ball... it's been two WEEKS since we submitted our prescription for GCSF to them and they are still dragging their feet about authorizing it. It's a really expensive med but very common for cancer patients, she's had it before, and it's written into her treatment protocol, so I don't know what their problem is, I'm just annoyed... if they don't OK the GCSF tomorrow morning, we'll have to truck all the way back into Boston just to get Hunter's GCSF at clinic.

BUT we are home and very VERY happy to be here. :)

Monday, December 4, 2006 8:25 PM EST

We have an ANC! It's a big fat 50 today, but 50 is better than zero, so we'll take it!

She's still having pain, the new plan today was to put her on a regular dose of morphine to cover her around the clock rather than to wait until she's screaming in pain. Since that started this afternoon, she's been much more comfortable and there have been no tears.

Taylor spent the day here with us at the hospital as my mom and Mike both had to work. She was her usual handful, but it was kind of nice to have her around to entertain us. :)

Today was the first day that our docs actually discussed a plan for going home during rounds. Since she hasn't had a fever in over 48 hours, everything depends on her counts coming up.

Because of the e coli bacteria that was in her bloodstream when she was admitted, she'll have to go home on IV antibiotics, which I'll give her 3x/day.

I'm just excited that the word 'home' has finally crept into our docs' vocabulary.

Our friend Lina moved into the room next to ours this afternoon. She's getting ready for her bone marrow transplant next week. Please keep her in your thoughts and prayers as well.



Sunday, December 3, 2006 7:05 PM EST

Day 5 without an ANC. Hunter's white count nudged up to .19. Whoopee. At least it's going in the right direction, I guess.

They've identified the bacteria from the first set of cultures. It's e coli. Scary. Thankfully, we're coming up on 72 hours since the second set of cultures and still nothing has grown.

I'm cautiously optimistic that her counts may be better tomorrow as she actually ate some macaroni & cheese tonight, which is the first thing she's consumed in 6 days other than Gatorade and chocolate milk. :) Hoping that getting an appetite back means good things for her counts. We'll see.


Saturday, December 2, 2006 8:53 PM CST

Day 4, still no ANC in sight. Hunter's white count didn't budge from yesterday at all. It's still basically nonexistent. The good news is that the second blood culture hasn't yet grown anything, so maybe, just MAYBE she'll get to keep her port.

Santa and his elves came to visit late this afternoon. While he didn't bring Hunter an ANC, he did bring a teddy bear, a cute Little Mermaid playset, and (I still can't believe this one) a Bose portable CD player with a set of Bose Quiet Comfort headphones. And the elves left bags with teddy bears and the same Bose goodies for Hayley and Taylor too! Apparently Bose was very generous to the Jimmy Fund this Christmas.

Santa (aka Dr. Grier, the attending doc on rounds yesterday) delivered the gifts and then as he was leaving, he popped his head back in to ask how Hunter's butt was doing. I saw Hunter's little head whip around at that and I just turned to her and said, "see, Santa knows EVERYTHING!" Her little eyes were as big as saucers! I hope I can get some serious mileage out of this... Santa knows EVERYTHING!!

Friday, December 1, 2006 11:59 PM

Another tough day for Hunter. Still no white cells to speak of (.12 to be exact) which means no ANC. No platelets (10) so no healing of her little butt sores. She was in a lot of pain several times today.

She needed both platelets and a red blood cell transfusion, as her hematocrit had dropped a full 10 points (to 21) since Tuesday.

This evening our nurse tried to draw out the Gentamycin that had been sitting in her port for a few hours and her port refused to draw. So we had to deaccess her and reaccess her. Twice. Without Emla. Hunter was not happy. Thank heavens the second time worked, because I was about to blow a gasket. She was so exhausted from all the crying and screaming that she fell asleep before the second nurse had even finished cleaning up the supplies off the bed. She didn't even wake up to give the clinical assistant grief when she came in to do Hunter's vitals just now.

Still no word on the decision as to whether her port stays or goes. They did change up one of her antibiotics tonight though.

I keep telling myself that if the Ara-C is doing this to all of Hunter's healthy cells, it must be doing a number on the cancer cells too. But honestly when she's got tears rolling down her little face because she's in so much pain, it makes it really hard to stay positive. We need those counts to come up soon.

Santa is supposed to come visit the kids on 6N and 6W tomorrow after the Jimmy Fund Winter Festival. I hope he brings Hunter an ANC.

Thursday, November 30, 2006 9:15 PM

Yesterday was a rough one. Hunter was screaming in pain that her butt hurt. I am suspicious that she has a fissure or maybe some internal sores from the chemo, because there's no rash or anything else visible. Even morphine did not help yesterday, she was absolutely miserable. Poor kid's body is so beat up from the Ara-C (she needed platelets AGAIN on Tuesday) that it can't even heal itself.

She didn't eat a thing all day and then at bedtime she vomited Gatorade all over her bed.

She went on to spike a fever at 1:00 this morning and it was off to the hospital again, where we're now inpatient. Again. (It was a lovely four whole days at home, though.) We found out this afternoon that her blood cultures grew a gram negative bacteria. We're treating it with 3 different antibiotics, plus some Gentamycin that they put in her port and let sit for a few hours, in the hope that the Gentamycin will kill off any bacteria that's hiding out in her port.

They will keep drawing cultures to see if we make any headway against the bacteria. If not, her port will have to be pulled.

Three years she's been on treatment, and this is the first time any of her cultures came back positive.

Unfortunately, this little 'vacation' at Children's means that we'll miss the annual Jimmy Fund Winter Festival this weekend, which is a big disappointment. The girls were really looking forward to it. I need to sit down and have a talk with this child about not running fevers right before Jimmy Fund parties!

Her ANC right now is a whopping 10, so we could be here for a while.

Please continue to keep Matty and Donovan in your prayers.



Wednesday, November 29, 2006 9:01 PM CST

I know I am seriously behind in updating. I had an update ready but don't feel like posting it at the moment. We are all OK for now, which is all that matters.

I'm asking for thoughts and prayers for two of our favorite guys, Matty and Donovan.

I HATE CANCER.

Monday, November 20, 2006 10:04 PM EST

Our buddy Matty needs your thoughts and prayers. Please. He is one amazing kid, with one amazing family. They got some really lousy news today.

Hepatoblastoma is what took my baby sister from our family over 30 years ago. It is supposed to be a rare form of cancer yet our friends Matty, Mary and Harley are all fighting it, and a little guy right up he street from us, Josh, is a survivor.

If you think there are great strides being made against childhood cancer, you are right. But there is so much more that needs to be done.

Monday, November 13, 2006 11:05 PM EST

Well today started out so normally. Things were buzzing along as usual, I was thinking about what I needed to pack for our inpatient stay for Ara-C tomorrow. And then Hunter had some bleeding where there should be no bleeding. And I noticed petichiae on her face. And remembered the weird bruise I'd noticed on her thigh last night. Checked the time - 1:00, good, still time to get to clinic and get transfused. Called the Jimmy Fund and told them Hunter needed platelets. We got there at 2:15 and they drew labs immediately. Yup, platelets were down to 11. They ordered them up and got her hooked up at about 4:30.

As she was being transfused our nurse came in and told us that we don't need to come in tomorrow. They won't start her high dose Ara-C until her platelets have rebounded to 75 on their own. So even if they are up over 75 tomorrow, it's because she was transfused today, so it doesn't count. So she gets a week's vacation.

And now Hunter's Thanksgiving dinner will have a nice side dish of chemo served with it. Who the heck came up with this menu??

Of course, this would be the week that my wonderful mother-in-law flew up from Florida to stay with Hayley and Taylor while I'm in the hospital with Hunter. But the bright side is, now we'll actually be able to be with her, instead of being in the hospital.

Other than today's events, the last week and a half has been pretty smooth. We did end up getting out after the high dose Methotrexate on that Friday. It was late, because her hematocrit had dropped to 24, so we had to wait for her 4PM levels to come back and then wait for blood and then get transfused before we could leave. So it was nearly 11PM before we walked in the door at home. But we were home and that's all that matters.

Hunter's little duck-fuzz hair has fallen out completely in the back and is very thin on the sides. It seems to still be growing on top though. She looks kind of like a Marine - with hair high and tight. :)

Thirteen inpatient stays down. Six more scheduled inpatient stays to go. 32 weeks down, 72 weeks to go. Just keep swimming.

Wednesday, November 1, 2006 8:53 PM CST

I think the pumpkins say it all...

Evil Diva and Pretty Princess. That would be Hunter's on the left and Hayley's on the right. Just in case there was any confusion.


Trick or treating at Dana Farber yesterday was insane. I am quite serious when I say that I am pretty sure the candy haul weighed more than Taylor does.


Hunter's costume this year - surprise, surprise - Stitch!! Here she is, rocking the Stitch costume back in September (pre-steroid cheeks and pre-fuzzy duckling hair.)


When we got to clinic, she insisted on wearing the costume over her fleece jacket and by the time we walked in to clinic from the parking garage, she was hot and made me take the costume off of her. So she trick or treated plainclothes at Dana Farber. But it was perfect for round 2 of trick or treat last night. From left to right we have Kim Possible, Stitch, dad, and Baby Chicken.




About twelve hours after the sugar buzz wore off, we were on our way back into clinic to start high dose methotrexate. I had hoped that getting labs out of the way yesterday meant we'd get chemo started nice and early today but it was not to be. We only got started about an hour and a half earlier than usual. Why? I don't know. Sometimes things just move at a snail's pace around here and there's not much you can do about it. But we're at the hospital now, settled in, and Hunter is finally sleeping after we read every Curious George book that we own (with promises that we'll do it all over again in the morning.) At least I think she's still in that bed, I can barely see her with all her 'guys' surrounding her. It's quite a crowd over there.

We got a nice little surprise when we moved in tonight and found out that since the last time we were here two weeks ago, they've now got laptops for every bed! Which means Hunter and I can sit here and surf the net at the same time.

Still sort of hoping to get out of here on Friday, although with the late start this afternoon that's looking less likely. But we're hoping.

Love,
Katie

Thursday, October 26, 2006 4:46 PM EDT

Hunter had a lumbar puncture with chemo on Tuesday. She usually gets them under conscious sedation, so she's awake, but pretty loopy while it's going on. This time around for a number of reasons, we chose to have her fully sedated. They have an anesthesiologist that comes over from Children's on Tuesdays and Fridays just for procedures at the Jimmy Fund. I'm always with her for conscious sedation procedures, but they don't allow parents in the room when they do full sedation for some reason. So I sat and waited in the playroom while she had her LP. Our nurse practitioner came out afterwards and told me it had all gone well, but that Hunter refused to fall asleep and sang and talked the entire time!! They used enough Propofol to knock out a rhino and Hunter still wouldn't sleep. Nobody tells HER what to do. :)

She's been able to go to preschool all this week, which I'm very happy about. She is too. We're scheduled to be inpatient for high dose methotrexate next week so she'll definitely miss school next week again.

Her hair is really growing in... but it's also starting to fall out again. It's so funny, the hair is about 3/4" long and suddenly this week it's decided not to lay flat and it sticks straight up all over her head. She looks like a baby chick. But she's got a bald patch on the back of her head that's starting to get bigger. I knew it wouldn't last but somehow it still makes me kind of mad/sad to see it fall out again.

We finagled our schedule next week so that she and Taylor will get to go to the Jimmy Fund Halloween party on Tuesday. She'll have all her bloodwork for her admission done, then go trick-or-treating in the Dana-Farber building. Then we come home and all of the girls will go out trick-or-treating in the neighborhood. (A lot of trick-or-treating for kids that don't particularly even like candy!) Then we go back in on Wednesday early to start getting pre-hydrated for the high-dose methotrexate. I'm hoping they'll be able to hang the chemo early since she's usually well hydrated on her own thanks to her Gatorade habit, and we'll have all the labs out of the way already. The earlier we get started, the better chance we get to go home quickly. Friday would be nice!

After this admit next week we'll have 6 more scheduled inpatient stays to go. I'm sure we'll be in for fever and neutropenia our fair share of times between now and spring 2008 when she finishes chemo again, but it's good to be able to count down the milestones. 30 weeks down, 74 to go. 24 weeks until Maintenance (which is no picnic, but shouldn't be nearly as tough as what she's doing now.) Actually if you take all of the last 3 years into consideration, it's 134 weeks down and 74 to go. Either way, we're getting there.

Friday, October 20, 2006 4:40 PM EDT

Here is the Taco Belle!



(Oh, and for those of you that have asked, yes, we did get out of the hospital on Tuesday. In fact, coincidentally, we rode down on the elevator and walked out to the parking garage with Matty and his family as they were going home.) :)


Wednesday, October 18, 2006 4:58 PM CDT

Remember a few weeks ago, I mentioned that I was glad Hunter was getting a week off before starting her steroids, because she had something special coming up?

Well I can now tell you what that something special is. Hunter was busy having a photo session done because...

(Move over, talking chihuahua... here comes Hunter!)


Hunter is the 2006 "Taco Bell kid" for Taco Bell's annual Jimmy Fund fundraising campaign! From today, October 18th, to November 8th, Taco Bells in New England and parts of New York will be asking for donations to the Jimmy Fund. Hunter's cute little face is on all of the promotional materials.

We drove through our local Taco Bell tonight just to see our little celebrity's photo. The people at the drive thru window were all excited to see Hunter... who was fast asleep in the back seat... oh well.

I'll be getting copies of some of the promotional materials on Friday, but I just couldn't wait any longer to share the news. I have a feeling I'll be eating more than my fair share of chalupas and cinnamon twists over the next three weeks. :)

Love,
Katie

Tuesday, October 17, 2006 11:17 AM EDT

Another rough night for Hunter but good news this morning. Her ANC is up to 1410, with 48 monos, so it should get yet another good bump up tomorrow. Since she's fever-free, her docs have discontinued the IV antibiotics. Which will hopefully help with the upset tummy and toxic poops. They are also discontinuing the IV morphine and want to see how she tolerates it orally. If she handles it OK orally, they want to send us HOME today!!!

Happy birthday to me, I just might get what I was wishing for.

Monday, October 16, 2006 10:19 PM EDT

Well, the Huntress had a pretty rough time last night. Her little butt is very raw and Mike said she was up screaming a few times overnight. The morphine seems to help, so tonight we're going to try and keep her on it consistently and hope she sleeps better. It's so hard to see her in pain - her usual response to pain is to clam up and refuse to speak to anyone. So if she's complaining, you know it's bad. The poor kid was so excited when I got here with the girls this afternoon, she tried to ride the tricycle down the hall but ended up in tears because it hurt.

She gave us a scare today when she started complaining of leg pain too. Any parent of a child with leukemia will know the absolute inner panic I'm talking about, just hearing the words, "my leg hurts!" But her attending is pretty confident there is nothing to worry about. Seeing her counts today made me feel better too. She actually has an ANC. It's only 130 so she's still severely neutropenic, but it's a step in the right direction. Of course, I'm still feeling horribly guilty about having to wake her up from a sound sleep tonight to jab a needle in her leg, since she fell asleep before the GCSF was ready. But it seems like the G is doing its thing. She's got 37 monocytes which means her counts should get a nice bump soon. Now that I think of it, the G could be the reason for the leg pain, as her marrow goes into overdrive. Wish I'd remembered that this afternoon. (Smacking myself in the forehead with disgust.)

Still no idea when we'll be sprung. Obviously she'll have to be off the morphine so her butt will need to improve significantly. (Another one of those statements she'll likely want to throttle me for when she reads this 10 years from now!)

Sunday, October 15, 2006 10:39 PM CDT

Still no ANC. Girlfriend was very cranky today ("Get me out of this stinkin' hospital!"), with an upset tummy and a sore butt. We don't know why she's having intestinal issues but I'm willing to bet that all the antibiotics she's been on over the last two weeks could be a factor. She did get a red blood transfusion this afternoon and perked up quite a bit. Her color actually went from a grayish green tinge to healthy looking pink cheeks. Her poor little butt was so sore that tonight they gave her a very small dose of morphine which Mike says seemed to help. (I am home for the night with Hayley and Taylor.)

No fevers today but she did get Tylenol to premedicate for the transfusion, so it's possible that the Tylenol could be masking something - we'll see how she does tonight.

The Insuflon cannula somehow managed to fall out of her leg this morning, I found it in her bed. I decided not to replace it today as they are only good for 7 days, and they have to be put in either on 6N or at the Jimmy Fund. So if we put one in today, we'd have to replace it on Tuesday to get back on a replacing-every-Tuesday-at-clinic schedule. It didn't seem worth it to put Hunter through the bigger, more painful stick of the Insuflon insertion today and again on Tuesday, just to avoid the smaller stick for the G shot tomorrow. So she got the G in her leg tonight and will tomorrow as well. On Tuesday we'll replace the Insuflon.

Congratulations to our new friend Chelsie, who finished treatment for osteosarcoma and is hoping to clear her methotrexate and go home tomorrow morning. We hope you enjoy your very last night on 6N! (Smile!)

We had some unexpected visitors tonight, our neighbors the Schmalls stopped by after they came in to Children's to donate blood. I know it must have been very bittersweet for them to come up to 6N after losing their beautiful Leanne last year, but it sure was nice to see them.

Speaking of donating blood, Children's Hospital is in desperate need of blood and platelets. They are offering free parking, and the last I heard they were even offering gas cards as an incentive to donate. For anyone that has asked what you can do to help, please consider donating at the Children's Hospital Blood Donor Center, or your local Red Cross. There is a major shortage right now and kids like Hunter depend on blood products to keep them alive and healthy.

One last thing, while I was definitely feeling slightly sorry for myself for missing the harbor cruise yesterday, I am VERY grateful that we caught Hunter's fever before we left. I just did the conversion and Hunter's 40.2C fever equates to 104F. Totally not something I'd want to fool around with, especially given the 0 ANC. Thank heavens we didn't go off and get stuck on a boat for a few hours, it's scary to think about what could have happened to her. I'm also feeling pretty lucky that we were able to get a bed on 6N (since they had been booked solid and were turning kids away for planned chemo on Friday), and that there were platelets and red blood cells available to Hunter when she needed them.

Now I'm going off to eat my leafy greens in the hopes of getting my lousy hemoglobin up to donation standards for tomorrow. :)

Love,
Katie

Saturday, October 14, 2006 8:35 PM EDT

Hunter's ANC is zero. Zip. Zilch. Nada. We're not going anywhere soon.

I need to get Matty's mom to send down the cocktail waitress from 10S when she's done up there!!

We did get to visit with some of our family from NJ tonight which was a nice surprise. Uncle Joe, Aunt Nancy and Cousin Keely came to 6N with Daddy, Hayley and Taylor. Thanks guys for coming all the way in to see us... and thanks for all the goodies! Hunter really loves the Dora puzzle especially.

Love,
Katie

Saturday, October 14, 2006 3:35 PM EDT

So today was the annual booze cruise lunch cruise around Boston Harbor for the Jimmy Fund parents. Apparently Hunter wasn't thrilled with the idea of us coming in to Boston without her, because she spiked a fever of 39.8 about five minutes before we were planning to leave.

So instead of Mom and Dad having a nice date, it's Mom and Hunter having a weekend getaway on 6N. Bleah.

When we got here we found out that her platelets are scary-low again, they were down to 9, despite her transfusion on Tuesday at clinic. So she'll get platelets again later this afternoon.

When she was triaged in the ER her fever was up to 40.2 and she had a little bit of a cough, so they also ordered an x-ray of her chest. Hunter was in no mood for the x-ray but fortunately they let me wear one of those lead gowns and I stayed with her while they were being done.

Now we wait for cultures and hope that the fever goes away and doesn't come back. I guess we're here until Monday at least.


Wednesday, October 11, 2006 4:41 PM CDT
We went in to clinic yesterday for counts. (No chemo this week or next week while she recovers from the Ara-C.) On our way in, our NP, Anne, called me on my cell and said that since Hunter's counts were pretty good as of Sunday when we were in the hospital, we really didn't need to come back for counts if I didn't want to. But since her counts crashed hard overnight both times she had the Ara-C before, I told Anne I wanted to come in anyway, and I had a sneaking suspicion she was going to need to be transfused. Sure enough, Hunter's ANC dropped from 5800 on Saturday to 330 yesterday, and she needed platelets. Chalk another one up for mother's intuition!

So no school for Hunter this week, we are staying close to home and riding out the neutropenia. If her prior experience with the Ara-C holds true, it should take 12-14 days for her counts to come up. We're on Day 9 now.

Hunter's fine with missing school as she's feeling pretty whipped lately anyway. She's doing a lot of laying around and ordering me to bring her snacks, Gatorade, and chocolate milk. She's actually eating things other than cheese these days so I guess I should just be grateful for the opportunity to serve the child something new and different. Hooray for pancakes and chocolate syrup.

The Insuflon cannula has been working out really well so far. The G still hurts going in, but it's SO much better not having to poke Hunter's little legs every day. In the past, her thighs have been covered in bruises when we had to do the G shots, and it took two of us to hold her down for them. Now I can do them on my own and she handles it pretty well.

So while things with us are relatively smooth at the moment, please keep our buddy Matty in your thoughts and prayers. They got some bad news about the tumors in his lungs this week, and he's scheduled for surgery on Friday to amputate his left arm because of the aggressive and painful tumors there. Cancer sucks.

And just because... this was the sky as we were driving home from clinic last night. It's a lousy photo because I took it with my cell phone, but there were rays of sun coming through the clouds, all the way across the horizon - it was incredible. Mike says it looks like heaven.



Love,
Katie

Sunday, October 8, 2006 6:55 PM EDT

We are home. :)

Saturday, October 7, 2006 7:17 PM EDT

Just a quick update - we're still here, but if things continue to progress in the right direction and she doesn't develop any more fevers, we should be discharged tomorrow!

Hunter had her Insuflon cannula put in this afternoon. The insertion was about as painful as an injection so she wasn't too happy about that. She also hollered when the GCSF was going in, I guess she can feel that too. So it's not the perfect solution I'd hoped for but maybe tomorrow will be better. Once she understands that she's not getting poked I hope that it will be an easier process.

Everything else looks pretty good at the moment, I'm hoping to be posting a big old, "WE'RE HOME!" update tomorrow.

Love,
Katie

Friday, October 6, 2006 10:34 PM EDT

A better day all around today. After I picked up Hayley from school, I brought her and Taylor in to the hospital so they could visit Hunter, and so I could switch off hospital duty with Mike. When I walked into the room I couldn't believe the difference from yesterday.

All of the puffiness is gone from her eye. Her rash seems to be fading. The sore on her hip is looking better. And she's eating again. Still nothing but string cheese, Ritz Bits, and Dora Fruit Snacks, but we'll take it.

She got her last dose of the dex eyedrops early this morning as well as her first GCSF shot (on Daddy's watch, ha ha!) Our NP is even talking about the possibility that we could get out sometime this weekend, if all continues to go well. They want the rash gone before they discharge us though.

Infectious Disease tells us that the rash does appear to be staphlyococcus aureus, which is very sensitive to antibiotics, so we were able to discontinue her Vancomycin and now she's just getting Cefepime.

Hunter's hematocrit took quite a tumble from 36 to 25 between Tuesday and today, so she did need a red blood transfusion. She finished that up tonight and she's now sleeping peacefully.

Our attending has given the approval for Hunter to get an Insuflon cannula put in her leg tomorrow. This will allow me to give her GCSF shots without any more injection pain. I'm really happy about this - she gets enough needle pokes as it is. If it works out well it will be a huge weight off of both of our shoulders, not having to dread the G shots every day. It's only one poke in a week to insert the Insuflon.

So I hardly dare say it, but things seem to be going in the right direction again. Thanks for all the thoughts and prayers, the guestbook messages and the emails. We appreciate them so much.

Love,
Katie

Thursday, October 5, 2006 9:45 PM EDT

I just got home for the night while Mike stays with Hunter so that I get to see Hayley and Taylor in the morning. It's been 3 days since I've laid eyes on them and I miss them!! My mom has been here since Tuesday for us, I really don't know what we'd do without her.

It was a long day today and another sleepless night last night (I want to know who exactly decided that the hall floors on 6N needed to be waxed and buffed with the big old loud buffing machine last night... all night long!) Anyway, bear with me because I'm sure this update is going to be all over the place.

The Huntress got her last dose of Ara-C for this cycle at 4AM. It's already starting to do its thing, with her ANC dropping from (a steroid induced) 13,000 on Tuesday to 5,300 today.

Starting about 9:00 this morning there was a pretty steady parade of people in and out of our room.

Our attending opened up one of the sores from the rashes on her leg (also on her back and a few spots on her neck now) to get cultures done on those. The preliminary results were inconclusive for chicken pox.

Right after that she got her double leg PEG shots (I was wrong when I thought they were going to be done yesterday) so you can imagine she was one unhappy camper by then.

Because they still can't rule out chicken pox, which is extremely dangerous for an immunosuppressed child to have, they moved us out of our room and into an isolation room, where she will have to stay, probably until we get out. So, no more roommate, but also no more playroom privileges. (Be careful what you wish for!)

The test they did on her hip showed staph, which is what they expected. Now we just wait to see what kind of staph it is and hope it's not something scary. The area does look much better today than it did yesterday though, so that's encouraging.

Hunter's eye was still pretty puffy today but got better after I put some warm compresses on it. Opthamology came up and did a full exam of her eyes (including giving her 3 different types of eyedrops in each eye, oh was she MAD!) The good news is that her eyes themselves are fine. They suggested that the puffiness may be some sort of contact dermatitis.

What else... they tested her blood to see what the Vancomycin levels were to make sure she's getting enough, and the test came back showing no detectable levels. Our nurse Chris said he's never seen that before. So they are upping her to Vanco every 6 hours instead of every 8. And she's also getting Cefapime, another antibiotic.

So basically we still have no clue what's going on. Dermatology will be coming up to poke at her some more tomorrow and see if they've got any ideas.

Mike just called from the hospital and said that she's running another fever of 39.0 (102).

Thanks for all your thoughts and prayers, we appreciate them.

Wednesday, October 4, 2006 10:47 PM EDT

Fever. Darn, darn, darn. Looks like we'll be here for a while.

At least our roommate (a teenage girl who kept falling asleep with the TV on last night and then the nurses would turn it off and then she'd wake up and put in on again, LOUD) is supposed to go home tomorrow. With any luck, we'll get to move to the B side of the room, which is like a penthouse compared to the A side. It's got the bathroom, the window, the good parent bed, the privacy, and it's about 3x the size of the A side!

Leg rash doesn't look any worse, the eye doesn't look any worse, the hip doesn't look any worse. I guess that's all good too. Better would be, well... better. But at this point, we'll happily take, not worse.

Wednesday, October 4, 2006 6:45 PM EDT

The Infectious Disease docs were just in to take a look at Hunter's hip. They decided to switch her antibiotic to Vancomycin. At this point we don't know what is going on, unless the cultures from this afternoon grow something.

Right after they left, I went to take Hunter to the potty and noticed a bunch of small red dots on her legs. I ran and grabbed the ID docs in the hallway and they came back in to take a look. The plan right now is to stick with the Vanco and keep an eye on her legs. And hope that that rash just goes away by itself. Not very reassuring.

So now I'm not even concerned with, "when do we get to go home?" as I am with, "please, please don't let Hunter have anything scary going on, especially since we just pumped her full of chemo that is going to crash her counts soon and leave her with nothing left to fight whatever it is!"

Wednesday, October 4, 2006 5:10 PM EDT

Well we are on our third dose of the high dose Ara-C with one more to go. So far no fever.

But Hunter's got some other stuff going on today. Yesterday she developed a little infection on the skin on her hip. After covering it with bacitracin last night, it was bigger and redder this morning, so Infectious Disease recommended that our attending open the sore in order to run cultures. She's basically been sleeping since 8PM last night other than potty trips, so we had to wake her up and bring her into the procedure room. That wasn't much fun for her to say the least.

She's also had some problems with her left eye, which is so puffy she can barely open it. We think that it's related to the cold/allergies she's been fighting off for the last week, but her face was already so swollen, the poor kid looks like she's gone a few rounds with Muhammed Ali now.

One of the possible side effects of the Ara-C is a chemical conjuctivitis, so she has to get dexamethasone eyedrops every 6 hours to prevent it. We've had an opthamology consult, and her eyes and conjunctiva look fine, so they don't think that's the problem, but of course it makes the eyedrops that much more traumatic for her. Opthamology seems to think it's swelling of the tear ducts causing the problem.

Later tonight she's due for PEG shots in both legs, I haven't told her yet. Those things hurt a lot.

We're still not sure when we'll be getting home. If she remains fever free it could be tomorrow. But only if her eye and hip improve. And she could develop a fever anytime. So I'm furiously knocking on wood right now.

About my entry a few days ago, I want to say something else. Despite how much this all sucks, I am very grateful that we have the chance to fight this cancer again, and that Hunter still has a good chance to beat it. I know some of our friends aren't as lucky as we are.

Love,
Katie

Monday, October 2, 2006 8:23 PM CDT

I am sorry for the lack of updates, everything is fine. I've been trying to spend loads of time with the girls and frankly, I'm feeling kind of bummed out these days, so updating without whining is a fair challenge at the moment. One that I'm probably going to fail miserably at, but darn it, I'm crabby right now.

Anyway, as of tonight, four weeks of dex are down and no more until the spring, phew. She handled the dex very well overall. Emotional meltdowns were kept to a minimum and she seemed to feel pretty good. Pretty good other than the discomfort from the weight gain and the... um... potty-related consequences of eating nothing but cheese for 4 weeks. We've pretty much been through the opposite ends of the potty spectrum in the last month. Her hair is growing, but I'm doing my best not to get too attached to it, it's likely to fall out again in the weeks ahead and then again during radiation. Her little face and belly are extremely bloated from the steroids and the weight gain. She looks nothing like the kid she was 4 weeks ago. I know those extra pounds will help during the months ahead, but it's hard watching her body change so drastically overnight. Which makes it difficult to admit that the last four weeks have felt like a vacation compared to what I know is coming.

Tomorrow we start Big Scary Chemo, Bigger and Scarier Than Ever Before. We go inpatient in the afternoon, I expect we'll be there until Saturday at least, as the Ara-C gives her fevers in addition to crashing her counts and forcing us to give her daily G shots until her counts rebound. I HATE Ara-C!

I am trying not to freak out over the 24 week phase that is ahead of us. It is going to be tough. Really, really tough. And when it's over, she gets radiation. Where they put a mesh mask over my baby's face and bolt her head to a table and pretty much fry her brain every day for a week. And then, well, there's another year of chemo. Oh joy.

Hunter is so happy and loving school these days, it breaks my heart to pick her up from preschool, knowing she won't be seeing much of that place for the next six months. She comes skipping out with her backpack on, full of stories. It's so stinking cute. I just wish she could be a normal kid and keep on enjoying school the way she is now.

As the leaves start to turn and a chill is in the air, I can't help thinking back to last year at this time. Last year, we were getting ready for Hunter's Wish trip to DisneyWorld, and looking forward to only a few more months of chemo - and putting cancer behind us forever. This year, we are getting ready to go inpatient for Big Scary Chemo, and looking ahead at a very rough fall and winter for Hunter. It makes me so painfully sad when I think about how much her life has changed. I wish there was some way to turn back the clock for a few days and just enjoy life the way we were last year.

On a lighter and much happier note, we attended the check presentation for the Dana Farber Marathon Challenge on Saturday. The goal this year was to raise $3.85 million. The 550 runners ended up raising $4.1 million dollars for cancer research. FOUR POINT ONE MILLION DOLLARS!! How awesome is that?!


Love,
Katie

Tuesday, September 19, 2006 10:20 PM EDT

Hunter's echo went well today, she was in a great mood and colored a picture of Clifford the Big Red Dog in the cardiology waiting room. When they brought her in to the exam room, they gave her a choice of three videos... Barney (NO!), The Wiggles (NO! NO!) and... Clifford (whew!) Perfect.

She did so well... she laid still for an hour and watched the video and chatted with me while they poked at her chest (her port was accessed at the time, I'm amazed she wasn't protesting), the only complaint she had was toward the end when she got hungry. The promise of a Dora fruit snack at the end of the echo was enough to make her happy.

And now for the 'just a reminder of how much CANCER SUCKS' portion of the update... please keep our friend from clinic in your thoughts and prayers. After over a year off treatment, Lina and her family found out on Friday that she has relapsed in her bone marrow.

I am so stinking sad and ticked off that another one of our friends has to do this all over again. At the risk of repeating myself, CANCER SUCKS!!!!


Monday, September 18, 2006 1:13 PM CDT

Yesterday was the annual Jimmy Fund Walk. Boston Marathon course, 26.2 miles from Hopkinton to Boston. Since I ran the course in April I sort of figured that walking it would be a piece of cake. But I feel like I can safely say, if I were to do the marathon again, I would much rather run it than walk it! Walking, you get the same aches and pains and blisters, but it takes twice as long! We walked for about 8.5 hours, start to finish.

My sister Liz, my brother Chris, my brother Matt and me, at Mile 9 - Hunter was the Hero for this mile. Fittingly (in my not so humble opinion), this is one of the prettiest miles on the course. :)


We had lunch in Wellesley, where we got to see my mom, who was volunteering at the water/lunch stop.

We met up with Mike and the girls, and my brother Jon and his girlfriend Laurie, at mile 25, near Kenmore Square. (Jon and Laurie got a free pass on walking since they'd each just run 20 miles between Friday and Saturday in the Reach The Beach relay!) Yes, that is a fleece hat (it was 80 degrees here) and a box of Ritz Bits along for the ride.


They walked the last 1.2 miles with us. Hunter actually insisted on getting out of the stroller and walking along with me, holding my hand. She said she didn't want me to be lonely and I should have my o'hana (family) with me.


We were able to cross the finish line together, and she accepted the finisher's medal on my behalf. After she got the medal, she said, "Mommy, I am very proud of you for winning the race!" Never mind that there were about 10 people standing there with armloads of medals that they were handing out to all the finishers, the only one she saw was ours. I just love that kid so much.


The other two days of preschool last week went well. Friday was the best day, at the end of the day she was skipping along with her backpack on, telling me how much fun she had, and how she made a new friend. "We swinged on the swings together, we played in dramatic play together, we played in the sandbox together..." When I asked her what her friend's name was, her response? "I don't know." Silly kid.

It's just really great to see her doing some normal four year old stuff for a change.

Two weeks of dex down, two weeks to go. At three boxes of Ritz Bits sandwiches (just the cheese part) a day, Nabisco's profits are going through the roof.

Love,
Katie

Wednesday, September 13, 2006 12:24 AM CDT

One week of steroids and Hunter's put on another two pounds! That's four pounds in two weeks.

Her appetite hasn't changed much, she's still going through 1/2 pound of American cheese a day. And still eating the Ritz Bits, though now she opens them, scrapes off the cheese, and chucks the crackers. Fortunately, she and Taylor have worked out a nice symbiotic relationship where Taylor then eats the shunned crackers.

We're a week into her four weeks of steroids, and I have to say, she's handling the dexamethasone like a champ. That stuff tastes absolutely disgusting, like the poison that it is. But she's been drinking it down mixed with a cup of Gatorade without any complaints.

The dex really kicked in as far as her counts go. Her ANC this week was over 12,000! Big difference from a few weeks ago when we were inpatient with a fever and an ANC of 50. Too bad we can't bank some of those neutrophils for later. She'll be needing them in a few weeks once she starts the high dose Ara-C again.

I found out yesterday that next week's dose of Daunorubicin will put her at 153 milligrams per meter squared, lifetime dose. At 150 milligrams per meter squared, they do an echocardiogram to make sure that everything is okay with her heart, since anthracyclines (Daunorubicin, Doxorubicin) can damage the heart muscle. I'm trying not to freak out about that... her heart looked fine in the echo she got at the beginning of her relapse protocol, and she's been getting a drug called dexrazosone with the Dauno that is supposed to help protect her heart. Still, it's one more thing to worry about, and one more reason to hate chemo! And it's serious enough that they won't do any sedation on her in the future until the echo's been done and she's got the all clear. She'll get the echo next week, and then if all looks fine, she'll get her last scheduled dose of Dauno for this protocol.

On Sunday, I'll be walking the Boston Marathon route with the Jimmy Fund Walk, along with my brothers Chris and Matt,and Matt's girlfriend, Kate, also a cancer survivor. Hunter is going to be a Hero, and her photo will be at Mile 9.

But I guess the big exciting news for Hunter is that she started preschool today!

Hayley was so proud of her little sister this morning:


She's off!


And one of Taylor the ragamuffin, just because.


She did great until I snuck in to see how she was doing and she caught me. Tomorrow I'm going to be brave and leave the building. I didn't think it would be so hard to leave her, but we've basically been joined at the hip for the last four years, so this is a big step for both of us.

Thanks as always for checking in.

Love,
Katie

Monday, September 11, 2006 12:02 AM EDT

The families of Bill Dean, Bill Hunt, and Al Kappelman are in my thoughts and prayers especially today.

Love,
Katie

Tuesday, September 5, 2006 7:14 PM CDT

Well the one week chemo vacation was a good one. Hunter's counts rebounded with an audible BANG. She managed to put on the kilo of weight that she lost (2.2 pounds) during her tummy bug.

That weight gain was the result of eating nothing but cheese Ritz Bits sandwich crackers for an entire week. Seriously, she was going through a box in a single sitting. And she wasn't even on steroids. Her method for eating them must be based on the Tao of Oreo. Open up the sandwich, scrape off the cheese, toss the naked crackers back in the box. When all sandwiches have been gutted, go back and eat the actual crackers.

Yesterday was the first time in a week that she broke from the Ritz Bits routine. She put away half a pound of Land O'Lakes white american cheese slices. Half a POUND!! Her body definitely seems to be making up for two weeks of not eating. And again... she hasn't even started her 28 days of steroids yet. (Be afraid, be very afraid.)

Last week we went to her new preschool so I could meet with her teachers and she could see the place. She went in a little tentative, but by the end of the meeting, she had four grownups all playing a game she invented involving tossing feathers into the reading nook (actually a lot harder than it sounds.) I think she's ready for school. I hope school is ready for her.

Hunter loves the flat panel TVs at clinic.


And girlfriend REALLY loves her Ritz Bits. (On the way home from clinic today.)


Love,
Katie

Sunday, September 3, 2006 11:27 PM EDT

Our friend Cameron passed away late last night. Cam fought hard through several relapses and when his doctor told him a few days ago, that it looked like the leukemia had won, Cam's answer was, "No, it hasn't."

He is so right. The cancer may have taken his body here on earth, but Cameron wins this battle. He is so much bigger than the stupid leukemia could ever be.

Please keep Cam's family in your thoughts and prayers.

Katie

Friday, September 1, 2006 11:52 PM EDT

I'm updating with a request to keep our buddy Matty in your thoughts and prayers. Matty is one of our clinic friends and he's really been through the wringer. He had liver cancer and a transplant, and a few months ago he relapsed with a tumor in his wrist.

Matty is now facing an amputation because the chemo is not working on his tumor.

Matty and his parents are the kind of people you can't help but love. Please keep them in your thoughts and prayers.


Tuesday, August 29, 2006 5:43 PM CDT

Hunter didn't make counts today. Her ANC needed to be 750 to start re-induction, and it was still only at 520. So we get a week off before The Big Eat and Scream, Supersized begins again.

She's only just today starting to eat, after nearly 2 weeks of consuming probably a grand total of 3 crackers and a stick of string cheese. I'm kind of glad that she'll get a week to gain some strength before she goes off on some kind of steroid-induced pancake/cream cheese/mayonnaise/Kraft Dinner binge.

I'm also glad that she won't be 'Roid Raging this week. We've got something pretty special brewing, and I want her in a good mood for it. I'll post details of our big exciting secret once I know for sure that it's going to go down as planned. :)

Hayley started first grade today with her brand-new big girl haircut. I chopped about 12" of hair off!


We talked about donating the ponytail to Locks of Love and I was explaining that they could either make it into a wig for Hunter, or for some other little girl; because some little girls don't like being bald.

Hayley yelled in to Hunter, "Hunter, do you mind being bald?" And Hunter replied with an immediate and emphatic, "NO!!"


Bald is beautiful.

And just because it's cute, here's one of the big girls rocking out on Uncle Jon's drumset last week.


Love,
Katie

Sunday, August 27, 2006 3:50 PM EDT

Fever: none
Vomiting: none
Poop Fairy: banished
Cultures: negative
ANC: 270 (with 52 monos!)
Drinking: LOTS

We are out of here!!! :)

Saturday, August 26, 2006 9:25 PM EDT

I spoke too soon. Not long after I wrote the last update, Hunter threw up that precious chocolate munchkin... and thus began the next round of 'incidents'.

She's still fever free but hasn't been able to hold anything down since Thursday night now. Not even Gatorade. She's been getting Zofran and Ativan and it's really not helping. The Poop Fairy has also returned. I really do think it's a tummy bug because Mike says that Taylor is having some of the same stuff going on, though not as severe. (Nice to have an immune system when you need one!)

Her ANC went up from 50 yesterday to 150 today, so it's going in the right direction. It has to be 200 before they will consider discharging her. Unless she is drinking well and keeping it down by tomorrow though, we are stuck here for at least another day, no matter what her ANC is.

Other than the tummy issues I swear you'd never know this kid was sick. She's got plenty of energy and played happily all day long.

I really hope we get to go home by Monday as Tuesday is Hayley's first day of first grade and I don't want to miss it.

They ended up not having enough room on 6 North for us last night, and put us on a different floor. Let's just say being there made me realize how spoiled we are on 6N. We got moved to 6N this evening and really, I almost feel guilty about wanting to go home so badly, when last night I would have given my right arm to be HERE and not on THAT OTHER FLOOR.

(Here, the mother of a severely neutropenic child would NEVER overhear her roommate's mother encourage her child to skip washing her hands after using the toilet if it made her surgical incision hurt to lean over the sink!!!)

Friday, August 25, 2006 12:40 PM EDT

The good news: Hunter seems to have shaken the tummy bug at long last. We haven't had an 'incident' since Wednesday night.

The bad news: She spiked a fever this morning and we're now back in clinic waiting for a bed to open up at the hospital so we can be admitted for fever and neutropenia. We'll be in until Sunday at least.

She's dropped more weight so we're getting an rx for some stuff we can mix in her Gatorade that adds calories.

She's still not eating much. She sent me downstairs for chocolate munchkins from Dunkin Donuts this morning and when I returned with the small box (of 25) she promptly ate... one. Now the other 24 are sitting here, whispering, "eat me."

Must. Not. Listen.

Wednesday, August 23, 2006 11:10 AM EDT

I'm updating from clinic today while Hunter gets some fluids through her port. Her lumbar puncture this morning went fine, but she looked awfully punky afterward so she's having a little bit of a lay down with her hydration now.

It's been a long and yucky week. REALLY YUCKY. Read further at your own risk. Seriously, you've been warned.

Hunter's had a lot of nausea and vomiting for the last 9 days, and some horrendous, atrocious, horrible explosive diarrhea. (Believe me, I hesitated to write that, knowing that she will want to throttle me for it someday when she's all grown up and reading this journal.) It's so bad... suffice to say that neither of us is wearing the same clothes right now that we had on this morning. (Thank heavens for hospital johnnies and scrubs.) If that weren't bad enough in and of itself, her little butt is pretty raw and irritated too.

It's been miserable for her (and not so fun for those of us who are sharing space with her either.) Our NP is running cultures today to check for C-Diff. I hope it's just some gnarly tummy bug that she hasn't been able to fight off yet because she has next to no white cells in her little body.

She's really not eaten much all week, and this morning when she weighed in we found out that she's lost a pound. Great if you are on Weight Watchers, not so good if you happen to be a little person fighting cancer. The Carnation Instant Breakfast that I've been sneaking into her chocolate milk is about all the nutrition she's had this week. That and Cocoa Puffs. I'm not sure Gatorade qualifies as nutrition. Actually I'm not so sure that the Cocoa Puffs do either.

Her counts really took a hit with this last cycle of chemo, with her ANC dropping from 2230 last week to 110 today. Her monos are good though so hopefully that means she's turning the corner and she'll bounce back soon. And that the Poop Fairy will be leaving our house.

With today's LP she's finished with the first Intensification phase of her treatment. Next week we start Reinduction, and 28 days of dexamethasone. The poor kid is going to start her very first days at preschool on steroids. Poor kid, poor teachers. At least we know she'll be eating again.

Please continue to keep Donovan in your thoughts and prayers.

Love,
Katie

Friday, August 18, 2006 10:15 PM EDT

I just got some very bad news about a little guy that is very close to our hearts. Baby Donovan has relapsed again. Donny is the same age as Taylor and has been fighting cancer since he was just one month old.

Please, PLEASE, keep this little guy in your thoughts and prayers. Cancer always SUCKS and it is always unfair... but my God, he's just a baby.

Melissa, Darren, Dylan and Donovan, you guys are in our hearts.

Love,
Katie

Tuesday, August 15, 2006 7:14 PM CDT

Well she did it again. At clinic today they came and told us that Jerry Remy, former Red Sox 2nd baseman and current color commentator for the Sox on NESN (that's the New England Sports Network for those of you not living in Red Sox Nation) was visiting clinic today with a camera crew, and would we mind being interviewed?

I said sure, and began crossing my fingers and toes that Hunter would be nicer to Jerry than she was to Jason Varitek and Wally the Green Monster. Ha. When Jerry walked over to her bed and handed her a t-shirt and a Wally Beanie Baby, she promptly took the sheet and pulled it up over her head. So her anti-Red Sox campaign lives. (Strike three... poof! you're officially a Yankee fan?! Say it ain't so!!!!)

The cameraman did get some footage of her later, which may or may not be on NESN this Saturday, during the Jimmy Fund Radio-Telethon.

Anyway, it was a very long day again... her hematocrit was not low enough to require a transfusion but it was close, and we decided to do the transfusion, knowing the chemo she got today will knock her counts down this week. She was also symptomatic - sleeping a lot, going to bed early, and more irritable/emotional than usual.

On the way in this morning, she asked if Dr. Jason was going to be back soon and when I had to tell her no, she sobbed hysterically for a good 10 minutes. (Don't worry Jason, the promise of a chocolate doughnut eventually eased her pain.) Anyway, my point was, she was a crabby pants on the edge, and needed the blood.

So hopefully this will be the only trip to the Jimmy Fund until next week.

Next week is an 'easy' week, just (!) a lumbar puncture on Wednesday. The first time through treatment, the LP's were my most dreaded days. Now, they seem like a piece of cake compared to the other chemo she gets. Amazing how quickly one's perspective can change.

Thank you Cindy from VA for being Hunter's 200,000th visitor. Wow. Thank you to the other 201,166 visitors as well, of course. I can't say enough how much it means that you all are thinking of Hunter.

Love,
Katie

Saturday, August 12, 2006 3:02 PM CDT

Princess en route to the hospital.


We went in on Tuesday for high dose methotrexate and got home yesterday afternoon, just in time to celebrate Hayley's 6th birthday. A fairly uneventful stay at the hospital, which is always good. It was only 4 days but somehow when we went in, it was summer... and now that we're out, it feels like fall.

On Wednesday they replaced all the old TV's with new plasma flat panel TV's. I wonder if the number of dads volunteering to stay at the hospital will suddenly skyrocket... :)

We were so excited to meet one of Hunter's chemo angels, Sarah. She was in visiting a friend of hers who has a daughter that's also treated on 6N. We've 'known' Sarah for about a year now by mail and email, it was really nice to see her in person.

Thursday a volunteer came in to play music with the kids. Hunter LOVED playing the drums. She's actually pretty good at it too.


Snugged up with a beautiful quilt made by my friends. Thanks again Elizabeth, Gina, Jackie, Christa, MK, Ossi, Yo, and especially Michelle and Heidi.


20 weeks down, 84 to go. 2 weeks until re-induction - 28 straight days of dexamethasone - The Big Eat and Scream, Turbo Edition. Trying to enjoy my sanity now while I still have it.

Hunter's new quote, when she's mad at me, "Mommy, you're 'sploding [exploding] me!!!" or, "Mommy, you're fired."

We are close to 200,000 hits on this site - amazing. I'd love to know who our 200,000th visitor will be!

Love,
Katie

Monday, August 7, 2006 2:05 PM EDT

Hunter was on TV. Watch the clip. (It's the clip titled, "Pan Mass bike race attracts celebrities.") It's a quick shot of her about a minute and a half in, sliding down the slide at clinic. She thinks she's one of the celebrities. :)

Love,
Katie

Saturday, August 5, 2006 10:00 PM EDT

This morning we headed out to the Dighton water stop for the Pan-Mass Challenge. As soon as we walked into the Pedal Partner tent, we saw Uta Pippig... three-time winner of the Boston Marathon, good friend of Dana-Farber, and one of my personal heroes. I was beyond thrilled to get a chance to chat with her a bit. She was so sweet, she sat down and played with the girls and when I told her I'd run Boston this year she gave me a big hug.


(The running geek in me just realized that in the last 6 months I've had the privilege to get to know THREE Boston Marathon winners... my DFMC coach Jack Fultz, Bill Rodgers, and now Uta Pippig. They've won EIGHT Bostons between them. I hope some of that mojo rubs off on me!!)

We got to meet up with our friends and Hunter's Pedal Partners, Dennis and Lori. (D&L: we managed to get NO photos of us all together on our camera! I hope Eric got a few good ones.) We are so grateful to them and proud of what they are doing with the PMC.

The girls got their faces painted and had a lot of fun just generally goofing off. I think the look on Hunter's face pretty much says it all.


We were really happy to see some of our old and new friends from the Jimmy Fund too, Bella, Kira, Tate, and Jessie.

Wally the Red Sox mascot was there too and Hunter again refused to even acknowledge his presence. Poor Wally.

Love,
Katie

P.S. I am overwhelmed at the number of people that are checking in on Hunter. Thank you all so much. I've said it before, but knowing we aren't alone in this makes all the difference in the world.

Wednesday, August 2, 2006 8:10 PM EDT

Hunter's lumbar puncture today went much, MUCH, MUCH better than the one she had three weeks ago. She got all the sedation she needed, and only wiggled a little this time. And thanks to the brand new flat panel TV that is now hanging in the procedure room, she actually (mostly) stayed lying down for her recovery.

It was quiet in clinic so I grabbed her a bed so that she could relax while I got her lunch (10 mini pancakes with chocolate syrup) for her. She took one whiff of the pancakes and promptly puked everywhere.

But, we got her all cleaned up and she chowed down her pancakes without further incident.

Just before we left, the clinic got a surprise visit from Wally, the mascot for the Red Sox. Hunter showed that she is an equal opportunity snot when it comes to the Red Sox, as she gave poor Wally about the same reception as she gave to Jason Varitek a few weeks ago. Wally walked in and she refused to look up from her puzzle. I might add that she didn't just snub Wally, she snubbed him in front of Wally's entire entourage who were there taking photos and filming his visit with the kids. (God, I hope she's not becoming a Yankee fan. This is what I get for marrying a guy from Jersey who bleeds pinstripes.)

Hunter's quote of the day:

Me: Wally's coming, you'll like him, he's like Pluto and all the guys that you loved when we were at Disney!

Hunter (with disgust): MOM. Hel-LOOOO. I think I have seen ENOUGH people in character costumes!

(She is so lucky she's a cute little snot.)

Love,
Katie

Monday, July 31, 2006 12:17 AM CDT

Clinic last week was another all-day affair. We're getting used to opening and closing the place these days! This Wednesday Hunter will get another lumbar puncture. We'll make sure she gets ALL of her sedation meds this time around so here's hoping it goes a little smoother than the last one.

Yesterday was the annual Jimmy Fund Summer Festival. The girls had a ball as always. We got to meet up with some of our old friends and even made some new ones.

The big bouncy slide - Hunter LOVED this thing. It was so high it made me nervous but Daddy's more fun than I am and he let her go.


Riding a real police motorcycle. We got to ride in a police car too, and the officer let Hayley push the siren buttons. I told Hunter that the JFC festival had better be the ONLY time I see her in the back of a police cruiser!!


Taylor's favorite thing - the bubble pools. She was SOAKED in bubbles from head to toe.


The baby animals tent. The Vietnamese Pot Belly pig was my favorite, but the girls loved these little bunnies.




It was a little bittersweet seeing all our old friends who are now off-treatment or nearing the end of their treatment, knowing the long road that Hunter has ahead of her. But we are slowly crossing off the weeks... 19 down, 85 to go. We'll get there. (Just keep swimming...)

A week from tomorrow is the last scheduled admission for high dose methotrexate for this phase of treatment. After next week she'll actually have 6 straight weeks of outpatient chemo before the inpatient stuff starts up again. (And it starts up with a bang too - high dose Ara-C. The biggest and the scariest of her Big Scary Chemo. Yuck.)

This weekend our friends Dennis and Lori will be riding in the 26th annual Pan-Mass Challenge. Hunter will be their Pedal Partner again this year. Dennis and Lori have raised over $8500 this year for the Jimmy Fund. Thanks so much guys... we'll see you in Dighton!

Love,
Katie

Saturday, July 22, 2006 1:01 PM CDT

We went in on Tuesday for another round of high dose methotrexate. Hunter did well and we were released yesterday.

This is how a sleepy Hunter gets transported from clinic to the hospital.



We had a little trouble crossing the street with the wheelchair and her IV pole and we were rescued by none other than the chief of staff of DFCI, Dr. Sallan, who escorted us right up to the new digs on 6 North. Hunter was asleep the entire time and never knew she made such a big entrance!

The new wing is beautiful, though it will take a little getting used to. Believe it or not, we had some fond memories of old 7 West. This is the room we lived in for three weeks after Hunter was first diagnosed. Amazing that The Simpsons have lasted for over 2 1/2 years!



The old playroom... with a view of the alley.



And 6 North. The new playroom... with a view of Boston. Pretty sweet.



The mosaic that greets you as you enter the new wing. It looks a lot nicer without the dirty laundry bags flanking it.



The princess in her new room. Kind of impossible to tell from the picture, but the lights behind her on the wall are all rainbow colors.



There are also cool recessed lights in the ceiling that cycle through all the colors of the rainbow. It's really pretty at night and a great way to convince Hunter that it's time to turn off the other lights and go to bed.

(I can't believe the ugly old privacy curtains managed to make the trip down from 7 West!)

Love,
Katie

Saturday, July 15, 2006 9:09 PM EDT

We are home. :)


Thursday, July 13, 2006 10:13 PM EDT

Fever of 38.4C this AM plus neutropenia (ANC 140) = 48 hours inpatient stay for us.

Hoping to get out on Saturday... just in time to unpack and repack for our scheduled inpatient admission next Tuesday.

Tuesday's the day that the hem/onc floor moves from 7 West to 6 North - a completely newly renovated wing of the hospital. So this will be our very last stay on 7 West. I guess Hunter just needed to say goodbye! One last vacation on 7 West, for old time's sake.

Love,
Katie

Wednesday, July 12, 2006 11:15 AM EDT

Three very giggly little girls yelling, "ALOHA" at the camera...



I am the luckiest mom in the world.

Monday, July 10, 2006 4:31 PM EDT

16 weeks down, 88 weeks to go. Another clinic day, another transfusion. This time it was platelets. But Hunter’s hematocrit is borderline which means she could well need red blood cells before the end of the week.

We were scheduled for a triple intrathecal lumbar puncture this morning. But her labs came back showing she was severely neutropenic (ANC of 70!) and her platelets were low, so we had to get transfused before we could get the LP. Because she is so neutropenic, her onc decided to leave out the methotrexate, so she only got Ara-C and hydrocortisone intrathecally today. And she started shots of GCSF to bring her white count up so that we can hopefully be admitted on time for her third round of high dose methotrexate next week.

The LP itself (first one in years that Dr. Jason didn’t do) went just OK. She was very wiggly and fought the procedure the whole time. I didn’t realize until it was over that she only got half of her usual dose of sedation meds. Won't let THAT happen again.

Because she was only very mildly sedated, getting her to lay down during recovery was a trick in itself. She was trying to jump off the table and leave before the clinical assistant had even washed the betadine off of her back. I'm just glad that this one is behind us now.

I’ve been thinking a lot about Hunter’s hair lately. It never did completely fall out this time around... at least, not yet. Today I noticed some peach fuzz is starting to grow out underneath her combover. I have some concerns that when the fuzz begins to fill in, it will combine with the few strands of long hair she’s got left to create a natural mullet. (The mullet motto: "Business up front, and party in the back!")

Anyway, about the hair... while it’s not gone altogether, it’s certainly very thin and since it’s very light blond, you can definitely see her little bald head underneath. We were at McDonald’s the other day and one of the employees just kept staring and staring at Hunter. It reminded me that most people aren’t accustomed to seeing little bald heads the way we are.

In my experience, most parents of a child with cancer struggle with the hair loss a lot. We know it shouldn't be that big of a deal, and that the hair WILL grow back, but it's hard nonetheless. The chemo is horrible and terrible and does awful things to our babies... but when their hair falls out, it changes the way they look and the way other people perceive them. Suddenly they start looking like a kid with cancer.

And that changes the way other people behave around us and the way we are treated. Suddenly other people no longer see my wonderful, amazing little girl, they see a kid with cancer. With the hair loss comes the fact that our kids’ battles are now out there for everyone to see.

My daughter is a beautiful, funny, smart, creative, joyful child. But when people look at her with her little bald head, I know they will label her, “cancer patient”. Or worse, “cancer victim”. But she is not defined by her cancer and she should not be defined by her baldness.

My wish is that when people look at her little bald head, that they don’t feel pity or sadness, but that they feel her courage and strength. It isn’t the cancer that made her hair fall out, it’s the chemo. Her bald head is a testament to her battle – a badge of honor. She’s a veteran in this battle and she’s earned the respect.

And for cripes sake, if she does end up with a mullet, don't hold it against us!

Love,
Katie


Tuesday, July 4, 2006 1:02 PM CDT

Happy Independence Day!

We were at clinic from 8:45 to 6:30 yesterday. Counts, Vitals, Hydration, Etoposide, Cyclophosphamide, Mesna, more hydration, red blood cells. Doesn’t sound like it would take 9 hours and 45 minutes does it? Got home just in time for dinner and bed.

It was our first visit since Dr. Jason left. I have to confess I kept expecting to see him come walking around the corner. I think Hunter was too, she kept asking where he was. Our Child Life Specialist decided we needed Dr. Jason with us, so she printed off a copy of the photo she took of him and Hunter last week and brought it into the infusion room. So he was there with us, sitting in the stroller all day. (And he never once complained!) ;)


We took the girls to our town’s Fourth of July festival this weekend.

Hunter's favorite ride, as always... the merry-go-round. She named her horse "Yolanda." I have no idea why. I also have no idea WHAT Hayley was doing here!


Riding a motorcycle...


Piloting a helicopter...


Taylor was gleefully shouting, "whee! whee! whee!" the entire time she was riding.


Home, playing in the backyard while we waited for the coals to heat up on the grill.


Quote of the day from Hunter yesterday... we were at clinic and I was goofing around with her, threatening to tickle her. She turned to me with a big grin on her face, and said, "Mommy, you are copying Dr. Jason's personality!"

Love,
Katie

Wednesday, June 28, 2006 10:38 PM EDT

We are HOME! Hunter's attending oncologist told us yesterday that her methotrexate level had to be below .1 in order for us to get released. (Her level was exactly .1 last time, 24 hours after finishing her high dose methotrexate.)

Today, at 7:00, we found out that her 24 hour level was .08, buying us an unexpected ticket HOME!!

Of course the day didn't all go quite as smoothly...

Around 2:00 the Child Life Specialist came to our room and said that Jason Varitek, the catcher for the Boston Red Sox, was on the floor, visiting kids, signing autographs, and taking photos with them.

Hunter was all excited to meet "a Red Sox" until... I decided to change her out of her PJ's for her picture. Somehow during the chaos of putting her on the bed and quickly trying to change her (picture a greased pig contest when the pig is attached to an IV pole), she managed to deaccess herself yet again.

We called our nurse Chris and he came running, we had to quickly remove her dressing and get her port accessed again... none of this was in Hunter's game plan and by the end of it, she was in NO mood to speak to anyone, no matter how cool.

I took her to the playroom and when Jason Varitek came in from doing his 'rounds', I said 'hi', and she refused to look up from her blocks. Little stinker. I did get a signed picture though, so it wasn't a total loss.

Quote of the day from Hunter:
H: I wish Dr. Jason was here.
Me: Me too. But we can send him an email if you want.
H: Yes. I hope his new house has a nice PINK mailbox outside for our email. :)

Love,
Katie



Tuesday, June 27, 2006 5:05 PM EDT

A new pic of the Dynamic Duo, taken yesterday...



Monday, June 26, 2006 9:48 PM EDT

We had to say goodbye to Dr. Jason
today. I've known this day was coming for the last 6 months but that didn't make it any easier (neither does the fact that I've been living in denial since I found out he was moving!)

Hunter was watching Lilo & Stitch the other day and there is a recurring line that goes, "O'hana means family." She turned to me and told me, "Dr. Jason is in our o'hana."

That's how we all feel... he's part of our o'hana. We were so lucky to have him as Hunter's doctor for the past 2 1/2 years. We are going to miss him... big time.

Hunter and Dr. Jason in March


We are inpatient for more chemo tonight. Hunter's voice came back on Thursday and I am keeping my fingers crossed that it doesn't go away again and that she won't get mouthsores.

Love,
Katie

Friday, June 23, 2006 12:55 AM EDT

Happy 4th Birthday to my little warrior/hurricane/princess... you never cease to amaze me and surprise me with the way you find joy in life when life has kicked your butt over and over. You are beautiful, you are incredible, and I am blessed a million times over to be your mommy.

July 2005 to June 2006... you've grown up so much... and been through more than any 4 year old should have to bear. But your smile says everything.



I love you SOOOOO much. "Right up to the moon and back. That's RIGHT."

Happy Birthday Hunter.

Today is also 14 years to the day from when my dad died. I love and miss you Dad.

Love,
Mommy

Monday, June 19, 2006 5:05 PM EDT

Friday morning, Hunter's voice went completely kaput. She couldn't make a squeak other than a whisper. We spent the weekend saying, "what?? WHAT???" every time she tried to tell us something.

Her mouth sore is much better than it was, although that's relatively speaking. It still looks pretty raw.

This morning we went in to Jimmy Fund with our bags packed, thinking we were going inpatient for more high dose methotrexate. But when Dr. Jason heard her voice he decided he wanted her seen by an ENT first.

Miraculously, he was able to get us an appointment at noon with the ENT right across the street. So over we went, and Hunter was all smiles and happy whispers... UNTIL...

The ENT doctor showed her a little squirty thing that emitted a cloud of 'fairy dust' (a.k.a. a spray of local anesthetic). Before she even said what she proposed to do with said fairy dust (spray it up her nose), Hunter, who is too wise to this stuff to believe a doctor is ever going to give her fairy dust, began to freak out.

With the help of a nurse, we got the stuff sprayed in her nose, and then the real fun began... the part where the ENT doc inserts a camera on a wire into Hunter's nose so that she could get a look at what was going on with Hunter's throat.

If you know Hunter, you know that this was... an adventure. It took FOUR of us to hold her still while the doc took a look.

At that point I was almost grateful to have a child with a mute button because no doubt the screaming would have been epic if she'd had any voice at all. As it was, she sat in her stroller with her arms crossed, giving us death stares and whispering four year old cusses at us for the rest of the appointment. ("You stink!! You are a big smelly poop! I am very MAD at you!! I'm never speakin' to you again...")

The doc showed me the video (which incidentally started before the camera went into Hunter's nose, so we got a nice shot of her furious little face just before it went in... in case I wasn't feeling guilty enough?!) Anyway, it showed her vocal cords were both moving, but that there was a lot of swelling around them.

The ENT's recommended treatment for the swelling was Prednisone and Prilosec. So Dr. Jason gave us a week off chemo to treat the throat, and we'll go in for the high dose methotrexate next Monday.

And it looks like she will get to have her birthday here at home. Hooray! Now I have to figure out how to make a Stitch cake because she announced today that THAT is what she is having.

She is excited to turn 4, but she is even more excited that the wonderful folks at the Disney Channel decided to broadcast two brand new episodes of Lilo & Stitch, The Series, and even better, a new movie, Leroy & Stitch... ON her birthday. It's going to be a Stitchapalooza here on Friday!

(While I was typing this update, Hunter was inventing a new game... squirting her baby sister with the Bad Cat water bottle. I think she likes Stitch so much because he's her alien alter ego.)

Love,
Katie


Thursday, June 15, 2006 2:56 PM CDT

Hunter had her first high-dose methotrexate on Tuesday, May 30. Her levels came down pretty quickly and we were able to go home on Thursday night. While we were inpatient, she developed a tiny little mouth sore in the corner of her lip, and a raspy voice.

I was hoping the fact that she cleared the methotrexate so quickly meant that she wouldn't have any side effects, but it was not to be. That mouth sore went from a pesky annoyance to something that is causing her a lot of pain now. It's heartbreaking, because she never complains about the pain, I just see her holding her cheek and whimpering. And she doesn't want to smile, because it hurts. When Hunter can't smile, the world just doesn't seem right.

The raspy voice is still there too. We don't know if it's a side effect of the methotrexate, or if it's something completely unrelated, but I miss her regular voice! It makes me sad - when I come after her with her mouth medicine - to hear her yell at me in her hoarse little voice, "get that stinkin' thing away from me!" (She may have lost her voice, but she hasn't lost her... Hunter-ness.)

I talked with Dr. Jason and if her mouth is still a problem on Monday, we may end up delaying her next round of high dose methotrexate for a few days. Which is good, but it also significantly increases the chance of her being inpatient for her 4th birthday on Friday the 23rd. I don't think a big bag of bright yellow chemo is on her Wish List!

After her chemo last Monday we went in for counts on Wednesday and she ended up needing another transfusion. I'm starting to lose count of how many she's had... and wonder how many more she will need in the future.

Her lumbar puncture on Monday came back clear... I can tell you I breathed a tremendous sigh of relief about that.

Dr. Jason will be leaving at the end of the month which is really hard to think about. We will start seeing one of the NP's at clinic that we know and love, but it means that we will have to change our clinic day from Monday to Tuesday. Which sounds like no big deal, but it means we won't see the Monday families we've gotten to know over the years. We will also not get to see our favorite playroom volunteer, Annette, who loves my girls and always takes very good care of us when we're there.

So it's been kind of a rough few weeks. Part of me didn't want to write this update because I do try to stay as positive as possible most of the time. But then I realized that it's not very honest of me, and not fair to Hunter, to make this seem like anything less than the giant sucking suckfest that it is. So there... I said it.

Love,
Katie

Wednesday, May 24, 2006 7:25 PM EDT

She pinches.



Thank you Angela for the great idea to make Hunter an "I pinch" t-shirt. I made this for her last night and she was giggling all day looking at it.

Love,
Katie

Monday, May 22, 2006 7:01 PM CDT

Going in for counts and RhoGam turned into another 8 hour day at clinic today. Hunter’s hematocrit was low and she needed another red blood transfusion. This means that in the 9 weeks she’s been on chemo since her relapse, she’s now had as many blood and platelet transfusions as she had during the entire two years of her treatment the first time around.

Hunter was a little crabby today though I can’t say I blame her after all she’s been through lately. I don’t know if it’s a coincidence but her favorite commercial these days is this one for the Honda Element, starring a crab (“I pinch”.) Actually it’s one of my favorite commercials too, I don’t know what that says about me.

An eight hour clinic day is a long day for anyone, but with a one year old who’s got perpetual ants in her pants, it’s exhausting! Taylor ran around for pretty much the entire day. And I chased her. She did let me push her in the stroller for about half an hour up and down the hall while Hunter was being transfused. And because desperate times call for desperate measures, I even resorted to making up a new game where she sat in an empty cardboard box and I pulled her around. In hindsight I probably should have considered that it’s much easier to run after her than to pull her around in a box... but like I said, I was desperate. I think somewhere in the back of my mind I was hoping that just sitting in a box quietly would be great fun for her and I could sit down and read a magazine. Riiiiiiight.

Hoping for a quiet rest of the week now as we prepare to go inpatient and start the next phase of Hunter’s treatment, high-dose methotrexate. 9 weeks of Big Scary Chemo down.

Love,
Katie

Friday, May 19, 2006 8:39 PM CDT

Today was an Excedrin headache day. One of those days when you know things could be worse, but you still just want to say, “ENOUGH ALREADY!!! I want to take a mulligan.”

This morning when I was giving Hunter her GCSF shot (which is a process that stinks in and of itself), I noticed some mysterious bruises on her legs. I knew her platelets were low on Wednesday (34,000 compared to her usual 400,000 range) so I wasn’t overly concerned, but made a mental note. We were scheduled for counts with our home nurse and I figured her platelets would still be in the low range.

Our nurse got here and after two tries and an hour of doing everything we could to get the port to draw (including dangling Hunter upside down by her feet – I’m not kidding! She thought it was hilarious.) it was obvious the stupid port was just not going to draw.

As I started packing up to head into the Jimmy Fund (for the third time this week, second unscheduled visit) I noticed Hunter’s port access site was still bleeding. I put a band aid on it and we got going. Halfway to Boston I stopped to take the band aid off and put on some Emla cream to numb her port site... and the darn thing was still slowly bleeding. By the time we got to the Jimmy Fund her shirt was bloody and her chest was a mess of Emla and blood. Gross. By then I knew she was going to need platelets and this was not going to be a quick trip.

We got her port accessed and it still refused to draw, so our nurse put some TPA in it to Roto-Rooter it out. With the TPA we had to wait an hour before we could try drawing again, and since we knew she would likely need platelets we wanted to get her counts ASAP to get the ball rolling. So I agreed to do a finger stick. Hunter’s first one. It was not pretty.

Between the screaming and the blood that went everywhere but into the vial, I’m sure it looked and sounded like we were murderizing the poor child. And then of course the finger wanted to continue bleeding for an hour afterwards.

When her counts came back, her platelets were indeed down... way down... to 9,000... and we got her set up for a transfusion. Her first platelet transfusion since her induction 2 ½ years ago.

I was hoping Mike could come from work and take Taylor, but thanks to a freak accident on the Mass Turnpike involving an eighteen-wheeler carrying liquid natural gas this morning, the Pike was closed for 10 hours, and he couldn’t get to Boston. So I alternated between chasing the napless, overtired, troublemaking baby and wheeling her around the hallway in her stroller while Hunter had her transfusion.

When she was finished and our nurse came in to deaccess her port, I couldn’t believe how bruised her poor little chest was. It hurt to look at it.

We left Boston at 5:45. The ideal time to be leaving Boston on a Friday afternoon. Not.

20 minutes later I got a call on my cell from our nurse telling us she’d forgotten to give Hunter her RhoGam. She needs it because she’s O negative and the platelets she got were O positive. So we will be off to the Jimmy Fund again on Monday. Another unscheduled visit.

The good news is that while her platelets were busy dropping between Wednesday and today, her ANC was climbing. So she’s no longer neutropenic. Hooray.

Now someone pass the Excedrin. (Or better yet, a Corona with lime?)

Love,
Katie

UPDATE: I just found out that our friend Bradley passed away last night. Bradley's mom Eileen and I were both dealing with the fear of relapse together 6 months ago. Bradley did in fact relapse in December, three months before Hunter. His sister was a perfect bone marrow match, and Bradley went to transplant in February. Two weeks ago, he relapsed again. As Julianna's dad Terry has said, there's a whole world of hurt here in our CaringBridge/ALL-Kids world. I'm so sad that the hurting has touched another family I've come to know.

Friday, May 12, 2006 5:59 PM EDT

Hunter's home!! And we have the path of Beanie Babies and Legos strewn about the house to prove it.

Happy Mother's Day to all the moms! Especially my own mom - I don't know what we'd do without her.

Mom, only for YOU would I put THIS on our website:



Now you know how much I must love you. :)

Love,
Katie

Wednesday, May 10, 2006 12:39 AM CDT

Just a quick update. We have been inpatient since Monday for more Big Scary Chemo. Well Big Scary Chemo Plus really... there's a lot of other stuff we have to give Hunter to undo some of the side effects of the BSC.

In addition to her chemo - Ara-C four times, and two PEG shots - she is also getting Benadryl, Reglan, Ativan, Zofran, Tylenol, Dexamethasone eye drops, and will start GCSF shots again tomorrow.

Along with the Ara-C, she's had fevers again. Since she finished her Ara-C this morning, we are hoping to go home tomorrow if her fever breaks and nothing grows in her culture. Right now she's fast asleep, holding on for dear life to the the pink balloon our roommate gave her this morning. (The balloon even accompanied us into the procedure room when she got her leg shots this morning.) She's been feeling pretty cruddy today so I hope she wakes up feeling a little better.

Thanks to Dr. Jason, I have a couple of pictures that have been liberated from the camera in my phone.

Taylor in the Prouty Garden here at the hospital last week.


Hunter on her favorite mode of transportation here. Pole Surfing.


Yesterday she was pole surfing while wearing a pink straw cowgirl hat she got at the Jimmy Fund, tipping her hat as we walked and hollering, "Yee haw! Woo hoo!"

Love,
Katie

Tuesday, May 2, 2006 2:39 PM CDT

It's been a long 10 days...

Saturday April 22 – end of scheduled inpatient stay at Children’s. Home, sweet home.

Sunday April 23 – uneventful, gave Hunter her first GCSF shot (helps her white cells to recover from the chemo) at home – well I suppose that was an event in itself. She wasn’t thrilled to find out being home no longer means people aren’t coming after her with needles.

Monday April 24 – regular visit to the Jimmy Fund. At least I didn’t have to be the one to poke her with a needle today.

Tuesday April 25 – back to the Jimmy Fund because CVS couldn’t get our GCSF prescription filled in time. Hunter’s ANC is over 5,000 and I worry that the chemo last week hasn’t hit her hard enough (ha!) I manage to wriggle out of one more GCSF shot and have Kathleen do it at clinic.

Wednesday April 26 – uneventful, more GCSF. My turn to poke the poor kid again.

Thursday April 27 – visiting nurse comes out and can’t get Hunter’s annoying new port to draw. Back to the Jimmy Fund we go. Dr. Jason calls us later at home and informs us that in the last two days, despite all the GCSF, Hunter’s ANC has plummeted from 5,000 to 40, making her severely neutropenic. I immediately regret worrying that the chemo hadn’t done its thing, and begin covering anything in our house that moves with Purell. Inanimate objects are sprayed down with Clorox. Having a hard time determining whether fat, lazy lump of a cat laying on the windowsill should be considered inanimate. I am determined that we will avoid the visit to the ER for fever and neutropenia that I know darn well is coming.

Friday April 28 – uneventful, yet more GCSF. More Purell, more Clorox spray.

Saturday April 29 – Hunter wakes up with the fever we futilely attempted to evade. Off we go to the ER at Children’s. Fever rises from 38.3(100.9F) to 39.9(103.8F) between home and the ER. The ER nurses can't get her port to draw. After a wrestling match with her port, our nurse Suzanne from 7 West is finally able to get the stupid thing to draw, saving Hunter from having to have a peripheral line (IV) inserted and rendering the port pointless. Her fever breaks after a dose of Tylenol and some IV antibiotics. Her ANC is up, but only barely, to 100, buying us a vacation on 7 West. Our get out of jail requirements: fever-free for 48 hours, negative cultures, and ANC over 500 (or over 200 for 2 days straight).

Sunday April 30 – Hunter’s been fever-free for 24 hours. Her ANC is up to 650. Mike comes to visit with Hayley and Taylor and we run the girls around the Prouty Garden at Children’s for an hour.




(I have a really cute picture of Taylor with the cherry blossoms but thanks to the infinite wisdom of the folks at Verizon I have no way of getting it off of my cell phone camera as the file is too large to email. But that's a rant for another day.)

By 5PM all three girls are thoroughly exhausted and begin to cry all at once. I wish Mike a fun ride home with Screamy #1 and Screamy #3. We get a nice surprise visit from Jan Ross (my DFMC teammate and Director of the DFMC program) and Jack Fultz (my DFMC coach and the 1976 winner of the Boston Marathon/Grand Marshal of the 2006 Boston Marathon).

Monday May 1 – Our nurse Chris has another fight with Hunter’s port as the night nurse was unable to get it to draw again. He manages at last to get enough blood for labs. She is still fever-free and ANC is up over 5,000. Love that GCSF stuff. Hunter doesn’t love it quite so much. But it gets us our ticket home.

Tuesday May 2 – We give Hunter her last GCSF shot of this cycle. Her poor little legs look like pincushions after all the shots over the last week and a half. And now hopefully we have the rest of the week off before we go inpatient next Monday for her second round of high dose Ara-C. Anyone got any good book recommendations?

Love,
Katie

Saturday, April 22, 2006 8:16 PM EDT

We are home!



Love,
Katie


Friday, April 21, 2006 8:09 PM CDT

I know I am overdue for an update, it’s been a crazy week... after the marathon on Monday we were admitted to the hospital on Tuesday and my internet access was spotty at best. I’m home tonight with Hayley and Taylor while Mike hangs out with Hunter on 7 West.

HUNTER...

Hunter had her end-of-induction lumbar puncture and bone marrow aspirate done at clinic on Tuesday morning. Both came back clear, which means she is officially in remission. (Hooray!!!)

Of course, her reward for being in remission is... more chemo... but this is great news. Remission means we were able to start Big Scary Chemo... so we are now 4 days closer to the end of treatment in 2 years than we were at the beginning of the week.

After clinic, we came across the street and were admitted to Children’s Tuesday afternoon. Hunter started on her high dose Ara-C that night, and got the last of it yesterday morning. She had two PEG shots (those nasty leg shots she used to get every week) yesterday as well. Maybe the worst thing as far as she’s concerned is, eyedrops every 6 hours to prevent a nasty form of conjunctivitis that the Ara-C can cause. She does NOT like the eyedrops, thank you very much. They sting and every time we give them to her, she (reasonably) yells at us, “my eyes are FINE, I don’t need eyedrops!”

We’d hoped to go home yesterday but she developed a high fever which bought us some more time inpatient. Since her counts are expected to crash soon, she will probably be in until the fever is gone AND her counts are on their way back up. A few more days at least, maybe longer.

Overall she is feeling okay, a little tired (needed a red cell transfusion this afternoon, her first in about 2 years), and a little nauseas (man, that word looks weird but spell check says it’s right), but she is a trooper. And bossy as heck. Lucky she fell asleep at 7:45 last night or there would have been some serious ‘discussion’ about whether we were going to watch Survivor, or Lilo & Stitch for the 487th time.

THE PASTA PARTY...

On Easter Sunday, we went to the official Dana Farber Marathon Challenge team pasta party. It was a huge shindig, with about 1500 people attending. At one point during the presentations they had the Patient Partners get up on stage along with their runners, while the great and beautiful (and nearly pocket-sized) three-time winner of the Boston Marathon, Uta Pippig, spoke. Somehow we ended up front and center of the stage, right behind Uta.

As we were standing there, Hunter was tired and a little loopy and she started playing with my face (fingers in the corners of my mouth forcing me to ‘smile’) and hair (making me a moustache). I had no idea until we sat back down, that the whole time Hunter was being Hunter, we were on the jumbotron right behind Uta, with all of the little stinker's antics broadcast to the entire room!



Thanks to our buddy Abby at the DFMC for decorating this poster of Hunter with all her favorite things... Dora, Boots, Lilo & Stitch, Play-Doh, crayons... it was perfect!!



(Yes, Hayley was there too... she was just camera shy!)

THE BOSTON MARATHON...

I know it sounds pretty much psychotic to say that running 26.2 miles was one of the absolute best experiences of my life... but it was.

I ran from Hopkinton to Boston side-by-side with my brother Jonathan, who is also a part of the Dana Farber team. I ran for Hunter, and he ran in memory of our dad and our sister.

4 hours and 41 minutes after we started, we crossed the finish line together. We weren’t fast, and both of us being injured, we weren’t pretty, but I think Jon said it best when he wrote in an email, “I can honestly say I had a blast on Monday. The one advantage to running the pace we did is that it gave you more time to soak it all in.”

That 4 hours and 41 minutes, while sometimes painful, was absolutely exhilarating, exciting, inspiring, and just outright FUN. I wore a sign on my running singlet that said, “Hunter’s Mom.” For 26.2 miles I heard people yelling, “GO HUNTER’S MOM!!” It was awesome.

(Well it was awesome except for the few times when they’d yell, “Go Hunter’s Mom!!” and then look at my brother (who is only 5 years younger than me) and yell, “Go Hunter!!!” I told Jon if we run again next year, he is going to wear a sign on his singlet that says, “Hunter’s Uncle.”)

I saw a few signs and heard people cheering my name along the way (my actual name, not “Hunter’s Mom”.) Some of them I knew, some I didn’t... but I so appreciated every single one of them. Whoever had that pink sign up in Framingham/Natick that said, “Katie and Hunter - Persevere” – thank you!

Thanks to our little cheering sections along the route... Kara, Heather and Christy; the Nahigians; the Burgesses and Ashbys (didn’t see you but know you were there!); the O'Reilly's; the Fannings; Dr. Jason, Amanda, Dr. Christy and Kristen from the Jimmy Fund; Jeanne and Trish; the DFMC cheering section at mile 25; Dan and Maureen Collins; and most of all, my wonderful family and the biggest supporters of all, Mom, Mike, Hayley, Hunter, Taylor, Joe, Nancy, Joey, Keely, and Seamus (honorary Donigan for the day.)

There were also lots and lots of people that cheered for us because we were running for Dana-Farber. Some ‘official’ Dana Farber cheering sections, some just because. Awesome.

Was I sore the next day? Yeah, but not too bad. The two parts of me that were sore that I was most surprised about were my right shoulder from all the high-fiving (Wellesley College ROCKS!) and my face… because I swear I think I was smiling the whole time we were running.

Jon and me... 1 mile to go…


Love,
Katie

P.S. Big CONGRATS to Laurie, who ran Boston in a blistering 3:22:15. I am so stinking proud of her!!!!

Wednesday, April 12, 2006 6:11 PM CDT

Hooray for Hives...
Today I was finally getting around to reading some of the stuff that Hayley brought home from school yesterday and among the drawings of princesses and the kid-spelling, I found a letter from the school nurse, saying that one of Hayley's classmates has chicken pox.

When your child has cancer, chicken pox is one of the things that makes your stomach clench. Especially if said child is neutropenic and has nearly no immune system to speak of at the moment.

About an hour later, I was changing Taylor and noticed several areas on her leg with raised round welts, like tiny mosquito bites. Of course I immediately flashed back to the chicken pox letter and... well you know what I was thinking.

Took Taylor to the pediatrician and it turns out, she has hives. Cancer has so warped my entire frame of reference on the world, that I was actually doing a mental touchdown dance... YEAH!!! HIVES!!! MY KID HAS HIVES!!!! YEAH!!!

Anyway, a little Benadryl later, Taylor's hives are gone and all three kids are miraculously asleep. (I swear, I only gave Benadryl to the one with the hives!!)

As far as Hunter is doing, her last two lumbar punctures came back clear. She is feeling just okay, very tired and the steroids have really done a number on her. Her poor little belly is so swollen... she was wearing overalls yesterday and they barely fit over her belly. It occurred to me that she looked like a pregnant woman in denial of the fact that she actually needs to buy some maternity clothes.

Her hair continues to fall out, but since she had so much to begin with, you wouldn't really know it unless you looked close. She's having a hard time with the idea of her hair falling out. She keeps telling me it's not.

We go in Tuesday for her end-of-induction lumbar puncture and bone marrow aspirate. If everything is clear, we will be admitted and start Big Scary Chemo that afternoon.

We had a great weekend at the annual Jimmy Fund getaway to Wildcat Mountain. The girls got their faces painted. Hunter was a dog:



Hayley was a butterfly:



Taylor was immensely entertained by Dr. Jason blowing bubbles for her to pop:



We didn't ski at all. I would have liked to but with the marathon coming up next Monday it didn't seem like the best idea in the world. I did get to take Hunter sledding a few times. It was a lot of fun until I stepped on some thin ice and put my foot into a puddle. Fortunately that's about when Hunter decided it was too cold and wanted to go inside.



The mountains were absolutely beautiful, Mt. Washington is still completely covered in snow.



And lastly, here's the view from our hotel.





The girls had a great time and it was so good for our family to have one last getaway before the Big Scary Chemo starts next week.

5 days to the marathon!! (And ppttthhhbbbbttt to the federal government for not recognizing Marathon Monday... I mean, Patriot's Day... as a holiday.)

Love,
Katie

Thursday, April 6, 2006 7:42 PM EDT

Well today could have gone better. It could have been worse, I know that... but it could have been better. I am having that temper tantrum right now that I swore I wouldn't have.

Today while Hunter was getting her 7th lumbar puncture in the last 17 days, I was stroking her hair and talking to her. And suddenly realized that strands of her hair were coming out in my hands. I knew it would happen but that doesn't make it any easier. I still haven't told her she's going to lose her hair, I don't know how... she LOVES her hair and is so proud of it.

Then I got her counts and they've taken a nosedive since we were in on Monday. Again, not unexpected, but a crappy reminder of what we are doing to her and where we are headed.

As she was eating her lunch Dr. Jason came into our room and broke the news to us that the HLA typing is back and that neither of the other girls is a bone marrow match for Hunter. I'm not sure we'd have gone that route anyway as there are a lot of very scary things that can happen in transplant, but knowing it is no longer even an option is really upsetting.

So right now it looks like it's going to be two more years of hard chemo for Hunter. I am mad, I am sad, I am hurting because of the 1-2-3 punch today that drove it all home to me. I would do anything to keep my baby from having to deal with this Huge Sucking Suckfest. Again.

Hissy fit over... tomorrow is a new day. We will get through this. I just wish we didn't have to.

Edited to add this random thought:

When Hunter went in to clinic for one of her first lumbar punctures after her relapse, she eagerly hopped up on the bed (with help), looked around the procedure room and, with a big smile on her face, asked for the cow. At first I was puzzled, and then I remembered that the toy box in that room had a cow puppet that mooed. We looked all over but the cow had apparently found a procedure room with lower rent because she was nowhere to be found.

I wish Hunter didn’t know that procedure room so well... as Dr. Jason said, “I wish she didn’t know there was a cow in here.”

No kid should have to know about the cow in the procedure room.

Love,
Katie

Tuesday, April 4, 2006 7:44 PM EDT

Friday I got a call from Cigna's Transplant Case Manager to inform me that should we go to transplant, we wouldn't be allowed to stay at Dana-Farber/Children's because they aren't part of their Transplant PPO - we'd have to go to another hospital in Boston that doesn't hold a candle to either DFCI or Children's. Oh, and also, they wouldn't be covering the HLA typing we had done the week before for the same reason (that's THOUSANDS of dollars!!)

I pitched a fit that rivalled the one Steroid Girl threw on Sunday when Picadilly Pub served her the WRONG kind of macaroni & cheese (aka Kraft Dinner instead of Stouffer's... we had to leave the restaurant with our lunches in styrofoam and our tails between our legs.) So to put it mildly, I was ticked.

Anyway, first thing yesterday, said Case Manager called and told me that they'd granted us an exemption and that they WOULD in fact cover transplant at Children's. Hooray.

Got to clinic and Dr. Jason gave me the results from the Friday, March 31 lumbar puncture - clear!

Results today from yesterday's lumbar puncture - clear!

So the suckfest sucks on, but at least we seem to be heading in the right direction.

If this Thursday's LP is clear too then she only has to have one LP next week instead of two. Since she goes inpatient for the first Big Scary Chemo the following week, a little break from the LP's would be nice for her.

She's handling this all in her usual Hunter fashion. Even with all she's been through over the last two and a half weeks (heck, the last two and a half YEARS), her only complaint of late has been that the dexamethasone tastes yucky and makes her stomach hurt. I've tasted it, and yucky doesn't even begin to cover it. Foul, nasty, putrid, repugnant and offensive is more like it. We're starting her on a new med that will hopefully help with the tummy pains due to the dex.

Right now the only way we can convince her to take the dex twice a day is by filling an additional syringe with water. After she takes her meds, she gets to squirt me or Mike with the syringe of water. A few times we've had to step it up and let her use the "bad cat" spray bottle on us. I told Mike that we need to be careful or else we're eventually going to have to set up a dunk tank in the living room just to get her to take her dex!

Physically she's still feeling pretty good. More tired than usual (she's sacked out on the couch next to me at the moment.) But other than the paleness and Vincristine eyes, she's doing well. That's part of what makes this all so hard. When she was first diagnosed in December 2003, she felt so sick and miserable, and we knew we had to give her chemo to make her feel better (ironic, I know). But after initially feeling like crap for three weeks, the chemo did what it was supposed to do and she eventually bounced back to pretty much her old self.

This time, she looks fine, she feels fine, and we are about to give this 'healthy' child some Big Scary Chemo and Radiation that is going to make her feel sick and miserable and make her beautiful hair fall out and possibly damage her brain and God knows what else. It breaks my heart to look at her lying here with me and know what's in store over the next weeks/months/years for her.

But she's Hunter and she'll get through this. It won't be easy but I totally believe in her.

On a lighter note, Easter is 12 days away... have you brushed up on your Peep Science?

Love,
Katie

Sunday, April 2, 2006 PM 7:50 PM EDT

From yesterday:



Thank you Paula!!

Love,
Katie

Saturday, April 1, 2006 4:20 PM EST

My friend Gina, who is a photographer in Pensacola, hooked us up with a photographer up here so we could get some family photos before all heck breaks loose with Hunter's treatment.

Paula met up with us at an old grist mill here today and spent about an hour photographing our family. She did all of this as a gift to us and we appreciate it beyond words. She does beautiful work, and is about the nicest person ever... check out her website: Paula Swift Photography. We should have the proofs in a couple of weeks or so.

Thank you so much Paula and Gina for making this happen.

The weather had been iffy all day but for that hour, it was pretty nice. Not five minutes after we got in the car to leave, the skies opened up and it started raining, Noah-style.

In honor of April Fool's Day, here is a joke Hunter told me on the way home in the car.

Hunter: Mommy, why does crabs not share their toys?
Me: I don't know?
Hunter: Because they are shellfish!
(Hysterical laughter ensues from the back seat.)

Love,
Katie


Thursday, March 30, 2006 6:28 PM CST

Hunter and Dr. Jason... what a team. :)



Love,
Katie

Wednesday, March 29, 2006 6:58 PM CST

Hunter's LP went well yesterday. The CSF initially appeared clear, and after pathology spun it down, there were just 3 blasts remaining in the entire sample. This is good.

We go back in tomorrow for blood work and to see Dr. Jason, and then she has another LP on Friday.

I was out running today and started thinking (always a dangerous thing) about how life can just throw you a curve ball when you least expect it. People have told me how strong I am to be handling it all... but I don't really see it that way.

I picture us just sailing along, the wind is behind us, the day is clear, and our destination is in sight. Suddenly, the wind changes and our sails luff. We can still see the destination, we just can't get there with the way our sails are set.

So do you give up and muddle about in the water, cursing the wind? No... you trim your sails and you find the wind again. And you tack and jibe your way to your destination. It's a lot more work, it's not the way you'd planned to go, and it's going to take a lot longer to get there. But you will get there.

So that's us. Our wind has changed but our destination has not. We will get there.

And now because I am sick and tired of reading about cancer all day and talking about cancer all day, how about this for dinner?

Our thoughts and prayers are with Molly, Billy and Donna today, as they have now been one whole year without Roly, their beloved daddy and husband. Donna, we love you guys.

Love,
Katie

Monday, March 27, 2006 12:55 PM EST

This Is Not A Love Song! (with apologies to Johnny Rotten)

On the way home from clinic this morning, Hunter was in a particularly goofy mood and she was singing me songs.

"I love you more than carrots.
I love you more than socks.
I love you more than ants.
I love you more than dirt."

Um... thanks?

Love,
Katie

Friday, March 24, 2006 7:30 PM EST

Hunter had her 2nd lumbar puncture with chemo today and the results were encouraging. After the one LP on Tuesday, she's gone from 900 leukemia blasts in her spinal fluid to 14. Her next LP will be on Tuesday. We are hopeful that after the chemo she got today, the results will be clear next week.

I have to share a story from my brother's girlfriend (and my friend). Laurie works for Boston College and was travelling with the women's basketball team for the NCAA tournament earlier this week, just after we found out about Hunter's relapse.

She emailed me, "I have to let you know that I was asked to speak to our women’s basketball team at pre-game dinner. I was trying to be funny, but I couldn’t be so I decided to tell them about Hunter and asked if they could keep her inside of them when they were playing. They did, they won and after the game each one of them told me they were thinking about ‘your’ little girl."

Not only did they win, they delivered a huge upset, knocking out the #1 seeded Ohio State. And they were thinking of my baby as they were kicking some Buckeye butt.

Go Eagles!

Love,
Katie

P.S. I have a Boston Marathon bib number! Lucky #18624. :)

Thursday, March 23, 2006 12:38 AM CST

Well I wrote one big long update when we were inpatient a few days ago but never posted it... because at the time I wrote it, I was hopping MAD about this whole thing. Mad that my baby has to be a science experiment again and can't just be a kid for a change.

But since temper tantrums don't get you anywhere (at least that's what I tell my kids), here's the sanitized version of the update. (Notice I do not say the words "huge sucking suckfest" anywhere here. Because that's just not productive.)

On Tuesday, we met with Dr. Jason and Dr. Lewis Silverman, who is the head of the ALL study at DFCI.

The plan is that Hunter will go through a 4 week induction just like last time around. They will let us do as much of it on an outpatient basis as possible, but if she develops a fever or any other complications we’ll end up inpatient at Children’s.

We all gave blood to be HLA typed and should have the results in a few weeks. If either Hayley or Taylor is a perfect match, they are recommending a bone marrow transplant. If not, the relapse protocol is another 2 years of chemo, but significantly tougher than what she’s already been through. She will get radiation as well, either pre-transplant or 1 year from now if we go with more chemo.

She had her first lumbar puncture with chemo on Tuesday and then we went across the street to Children’s where she was admitted. Wednesday morning she had a new port put in, and they started her chemo yesterday afternoon. We came home last night. She’ll have another LP tomorrow, then Tuesday and Friday next week, along with the rest of her chemo. If she’s in remission after next Friday, she gets an LP each of the two following weeks. If not, she continues to get 2 a week until she’s in remission.

So that’s where we’re at. Waiting to find out if either of the other girls is a match and then we make a decision on treatment from there. Not a pleasant decision to have to make. I just hope and pray we do the right thing.

The good news is that unlike last time, Hunter is starting this fight strong. She feels pretty good and she is one tough kid. In the 48 hours between Monday afternoon and Wednesday afternoon, she had 2 lumbar punctures, a bone marrow aspirate, 3 IV lines inserted, 1 IV line blow out, a port removal surgery, a port insertion surgery, an echocardiogram right over the surgery site, an inpatient stay, and 2 rounds of chemo. And not one complaint from her. (OK she wasn't thrilled with getting that 3rd IV put in, but once it was in, she handled it like a champ.)

If anyone can do this, she can.

Thank you for the outpouring of support in the guestbook, I am totally overwhelmed. I've said it before but it really helps to know we aren't alone in this fight.

Love,
Katie

Update:
We are about to hit 100,000 visitors to this site! If you are the 100,000th visitor, please let me know... that's pretty cool.

A lot of you have asked if I will still be running the marathon. The answer is absolutely YES. I thought for about a minute that I should back out considering the circumstances, but then I realized that this is exactly WHY I am running. No family should have to deal with this kind of suckfest (oops, did I just say that?)

Love,
Katie

Monday, March 20, 2006 4:52 PM CST

This is an update I hoped and prayed I'd never have to write.

Hunter had her port out this afternoon and at the same time we did a lumbar puncture and bone marrow aspirate, just to rule out a relapse given the symptoms of the past 2 weeks.

I am devastated to say that the LP showed that she has in fact relapsed. Her bone marrow was clear, so it is isolated to her CNS.

We go back in tomorrow morning to meet with the oncology team and discuss our options. She will have her first lumbar puncture with chemo tomorrow afternoon to begin to get her back into remission.

I feel like the rug has been ripped out from under us yet again. But it’s worse this time because we’re still hurting from having the rug ripped out from under us the first time around.

I am so heartbroken that we have to put her through all of this again. And I know it’s stupid but knowing all those beautiful blond curls are going to go away just feels like a knife in my heart.

I feel like I’ve been kissed by a Dementor.

Any prayers and positive thoughts would be appreciated. We have a long road ahead of us, I hope that we can make the best decisions for Hunter.

I'll update again once I get my head together.

Love,
Katie

Sunday, March 19, 2006 6:56 PM EST

This morning I was grumbling around the house at 6AM, getting ready to head out for an 18 mile group run with the Marathon Challenge team, feeling sorry for myself for having to go out in the 23 degree weather, and wondering why the heck I was putting myself through this.

I turned on the TV to watch the morning news as I packed my duffel bag with earmuffs, neck gaiter, gloves, Gatorade, etc., and caught a story about this family: Andrew's Helpful Hands. Their son Andrew also had leukemia, but passed away after he received a bone marrow transplant. And his family is honoring his memory by running a foundation that provides support for other families that have a child going through bone marrow transplant.

Right. THAT is why I am putting myself through this. Because no family should ever have to say goodbye to their 5 year old son. Just the reminder I needed to quit bellyaching and be grateful that I can do something to help.

Love,
Katie

Thursday, March 16, 2006 12:38 AM CST

Mike clued me in the other day that it's been a month since I last updated. I could have sworn it had only been a couple of weeks.

We are on Day 12 of a mystery illness that has hit Hunter pretty hard. Fortunately we are 72 hours since her last bout of puking ("Mommy, I do not LIKE pee-yuking!"), but whatever she's got is still wiping out her normally boundless energy. She's been napping a decent amount lately.

They say that most parents of a child with cancer suffer some degree of post-traumatic stress syndrome. A soldier may return from war and instinctively duck and run for cover upon hearing a loud bang.

The parent of a child with cancer instinctively ducks and runs for cover upon hearing the child complain of leg pains, nausea, headaches, or of being overly tired. Any one of these seemingly innocuous symptoms could signal your worst fear... that IT is back.

So as I watch her sleeping peacefully on the couch now, knowing perfectly well that she's probably still fighting off that tummy bug, I worry.

Monday she is scheduled to get her port out and have what we hope and pray is her final lumbar puncture. Given the events of the last week and a half, Dr. Jason and I have decided to go ahead and do a bone marrow aspirate as well. I know that we'll all rest a little easier when and if everything comes back clear.

Until the next tummy bug comes along.

Love,
Katie

Saturday, February 18, 2006 9:47 PM CST

We are one month and one day off-treatment. Hunter celebrated by having a full-on steroid tantrum. Oh wait, she's been off steroids for 2 months now. I choose to believe there are still some steroids lurking somewhere within her, no way is my little princess truly that rotten... right?

Other than the usual being-a-three-year-old and having WAY too much energy stuff, Hunter's doing really well. I have enrolled her in preschool for the fall - I made the mistake of telling her, and she is already bugging me daily to go shopping for a new backpack. (Did I really learn NOTHING from 8 months of, "Are we going to Disney tomorrow? When is our trip to Disney?")

Tomorrow I get to run a quick 14 miles in the lovely 20 degree Massachusetts deep-freeze. Hope I don't trip over a penguin or a polar bear. Will warm up by huddling around the TV watching a bunch of guys in Florida driving WAY too fast to the utter delight of a couple hundred thousand sunburned beer-swilling fans. Go Tony Stewart!!



And just for kicks, this is from October 2004, when Hunter was 2 years old, 10 months into treatment and still pretty much bald... and even then a true #20 fan!



Boogety, boogety, boogety, let's go racing!!

Love,
Katie

UPDATE: I just checked and it's 8 degrees out. -6 with the wind chill. That's Fahrenheit kids, not Celsius, which would be -13 and -21 respectively. All of a sudden running in 20 degree weather is looking pretty sweet.

Wednesday, February 1, 2006 7:05 PM EST

It’s hard to believe it’s been 2 weeks since I’ve updated... we are all settling into life off-treatment. Well Hunter doesn’t seem to notice that anything is different, it’s more me that’s trying to get used to the new routine!

Hunter’s feeling great... the last few weeks on chemo she was up to a 140 percent dosage of methotrexate and 6-MP, and was looking a little pale toward the end. She always had a pretty high energy level, despite looking tired. Well she’s got her pink cheeks back now, and her energy level... well it’s like she used to be a Boeing 747... and now she’s an F-16 fighter jet. But louder than an F-16. And more destructive.

She’s recently discovered orange juice. I never used to let her have it while she was on treatment, since folic acid can interfere with the way methotrexate works. Probably not in the amounts found in OJ, but I figured better safe than sorry. So now she’s chugging OJ like a frat boy chugs keg beer.

She has a new game that she plays, called, “I am Dr. Jason.” I should preface this by telling you that one of her chemo meds, Vincristine, has the lovely side effect of sometimes causing constipation. So before she could get Vincristine at the beginning of her cycle, Dr. Jason would ask if she was having any constipation issues. The conversation usually went like this:

Dr. Jason: Any mouth sores?
Me: Nope.
Dr. Jason: Eating okay?
Me: Yep.
Dr. Jason: Pooping okay?
Me: Yep.

We have had this conversation about a gazillion times since Hunter was diagnosed. But in Hunter’s little world, apparently the only interesting part of this exchange was the part about the poop. So she’s sitting on the couch next to me, being Dr. Jason. She's got a pad and pen and is carefully recording my answers just as Dr. Jason does.

Hunter: So, Mommy, are you pooping okay?
Me: Uh, yeah?
Hunter: Is Hayley pooping okay?
Me: Yes?
Hunter: Is Daddy pooping okay?
Me: Yes?
Hunter: Is Taylor pooping okay?
Me: Yes?
Hunter: Is Grandma pooping okay?...

And it goes on... until she’s ascertained that everyone in her life is pooping okay. Makes me wonder what she thinks all those clinic visits were all about anyway. Cancer? What cancer? As long as you’re pooping okay, Hunter!

Anyway... 11 weeks to go until the Boston Marathon. Training is going well, especially in this nice weather. My long run so far has been 15 miles. Just 11.2 more and it's a marathon!

We went to the Dana Farber Marathon Challenge “Meet Your Match” party on Saturday. This is where runners are paired up with a "Patient Partner" - a kid from the Jimmy Fund clinic, who they will be running for. Of course I already know my Patient Partner quite well, having given birth to her and lived with her for the past 3 ½ years, but hey, a party is a party! They gave the girls megaphones that they can use at the Dana Farber cheering section at Mile 25. I will need to work on them to get them to shout, “Go Mommy!” or something equally appropriate... because now every time they pick the megaphones up, I hear, “Go Navy! Beat Army!”

Oh well, if I hear, “Beat Army!” on Marathon Day, at least I’ll know who’s yelling.

Love,
Katie


Thursday, January 19, 2006 12:32 AM CST
Hunter had her end-of-treatment lumbar puncture and bone marrow aspirate on Tuesday the 17th. As usual, she handled it like a trooper. She spent her recovery time in a bed in one of the infusion rooms, watching Lilo & Stitch on a portable DVD player, surrounded by her stuffed Lilo and Stitch toys.

Stitch has become her favorite lately, and when I think about it, it’s not too surprising. If you’ve seen the movies, you know that Stitch is naughty, destructive, rambunctious, and reckless... but also pretty cute and very lovable. Sounds just like Hunter.

A very tired Hunter at Disney the day she got Stitch:


Anyway, the procedure went well. Before we left, we found out that when the spinal fluid was spun down, there were 20 white blood cells, 1 WBC/ml, which is within normal limits. And then we went home to wait for news from Dr. Jason once pathology had a chance to review the WBC’s.

Hunter and Dr. Jason. She was being a nudge and wouldn't sit up for the picture. :)


Wednesday morning blew in (and I mean that literally). It was raining buckets, sideways. And the wind was blowing like crazy. Around 11:30, the wind blew down our neighbor’s huge old tree, which fell across the street and took down the power lines. And we were in the dark. I realized that our cordless phones do not work when we have no electricity, so started looking for my cell phone, which was not in its usual place on the counter.

Confusion turned to panic as I ran around the dark house looking for the darn thing. What if Dr. Jason was trying to call??? A few minutes later, I heard it ring… and found it under the couch. Apparently some little person had decided it was a toy.

But all that is pretty much irrelevant because what Dr. Jason was calling to tell us, was that none of the WBC’s were malignant. Hunter is cancer-free, and officially off-treatment.

This is the face of a kid that kicked cancer’s BUTT.


Love,
Katie

Tuesday, January 10, 2006 8:30 PM EST

Goodbye methotrexate!! (See the yellow stuff in the syringe in my hand?) We love what you did for us, but we're happy to kick you to the curb now!!



One more dose of 6-MP tonight and Hunter will be DONE with chemo. :)

Love,
Katie

Tuesday, January 10, 2006 9:38 AM CST

As the song says, we've come a long, long way together, through the hard times and the good. I have to celebrate you baby, I have to praise you like I shoooooooooould.

Tonight, my little warrior will take her last chemo. EVER. (Because her spinal fluid *is* going to be clear next week.) Have I mentioned she's on 140 percent of both her methotrexate and 6-MP? She's definitely going out with a big chemo bang!

Tonight is the last time I will ever have to glove up and inject chemicals into her. Tonight is the last night I will ever have to wake her up to put chemo meds in her mouth.

Hunter is three years and seven months old. And she's been on chemo for two years and one month. Well over half her life. She doesn't remember life before chemo. Heck, I barely remember life before chemo.

I am feeling scared and excited all at once. Goodbye chemo blankie. Goodbye steroid rages. Goodbye Vincristine eyes. Goodbye toxic chemicals running through my baby's bloodstream.

She's technically got a few more days left in her cycle, but they're non-chemo days. Next Tuesday is her end-of-treatment lumbar puncture and bone marrow aspirate. Please say a prayer that we get great news... I'm so ready for her to put this cancer stuff behind her and start her new healthy life!

Am I proud of this kid? Hell yeah. I don't know of many adults that could go through what she's been through over the last 2 years... and she's done it with no complaints about the yucky meds, the port accesses, the lumbar punctures, the endless trips into Boston.

And it's not just the not complaining part of it. She's good at finding things to be happy about, and that smile and laugh just melt me.

Proud doesn't even begin to cover it.

Love,
Katie

Thursday, December 29, 2005 5:02 PM CST

Christmas 2003 - Hunter is weak and sick and feeling crappy. She can't walk because her legs hurt. Santa comes in to her hospital room and scares the pants off of her and makes her cry.

Christmas 2005 - Grandma's new condo has an open foyer and Hunter climbs up the stairwell, on the wrong side of the bannister. My brother notices her hanging like a monkey 12 feet in the air at the top of the landing. The whole family is involved in the rescue operation. Hunter is laughing her butt off the entire time.

'Nuff said?

In other news, the Huntress had her very LAST clinic visit for chemo yesterday. (I am choosing to believe it IS her last, even though we have 2 LP's coming that may tell us different.) She had her last dose of Vincristine (aka "Stinky Vinky", "Mean Cristine".) We have 8 more doses of steroids, 13 more doses of 6-MP, and 2 more doses of Methotrexate and then she is DONE with chemo. DONE.

It felt completely surreal when Hunter's nurse Kathleen gave us the "Transition to Survivorship" manual. I'm sitting here looking at it on the kitchen table and it still doesn't feel like it belongs to us. It's much smaller than the manual they give you at diagnosis. I keep wondering if it will be my bible like the diagnosis manual was, or if it will sit on the desk untouched.

When Hunter had a meltdown for no apparent reason at the Copley Center Mall in Boston this afternoon, it hit me that this is our last chance to blame her naughty behavior on steroids. I wonder if she will start eating like a normal person now... today she had a bagel and cream cheese for breakfast, a bagel and cream cheese for lunch, and (I’m sure you see where this is going) a bagel and cream cheese for dinner.

It’s going to be weird not to have to wake her up to give her 6-MP at night (it has to be taken 2 hours after eating). She gets it for 14 days out of every 21 and for the 7 days she doesn’t get it, I always feel like I’m forgetting something.

We have scheduled her end-of-treatment bone marrow aspirate and lumbar puncture for January 17. I think once we get back the all-clear on her LP in 3 weeks, I will be ready to celebrate. Normally they would remove her port while she’s sedated as well, but because of that LP 6 weeks ago that showed the atypical cells, we’re going to have one extra off-treatment LP in 12 weeks, and we’ll leave her port in until then.

Dr. Jason told us yesterday that he may be leaving Dana-Farber when his fellowship is up, as his wife has an opportunity in another city. It’s odd, I had a dream a few weeks ago that Jason told me he was leaving when his fellowship ended. I hadn’t thought about it since. Even though we will be off-treatment (we WILL be off-treatment... she WILL have clear spinal fluid!!!) and only going to clinic for blood counts from now on, I will be so sad to see him go. Selfish, huh?

I have heard so many stories over the last 2 years from parents who were frustrated because their child’s oncologist was a know-it-all, or had no time for questions, or who chastised them for doing research on the internet. But Jason has always welcomed my endless questions and has never acted like he had someplace better to be. He has been with us since Day One – he was the on-call oncologist the night Hunter came into the ER 2 years ago, and he’s the one that gave us her diagnosis. Plus, he’s an all-around good guy and Hunter adores him (I still haven’t broken it to her that he’s now married!) So selfishly, I hope he stays in Boston. And I’m not just saying that in case he checks in here. :)

In non-cancer related news, Taylor will turn ONE on Saturday. I spent New Year’s Eve 2003 with Hunter in the hospital, as she’d just been diagnosed. I spent New Year’s Eve 2004 with Taylor in the hospital, as she’d just been born. I am really, REALLY looking forward to spending New Year’s Eve this year here at home, and actually having some champagne while we watch the ball drop!

Happy New Year. :)

Love,
Katie

8:10 PM... Edited to add:

I just put the girls to bed and got a smile out of Hunter's nightly routine. I presented her with 3 syringes of oral meds - Mylanta, Prednisone, and Atovaquone. Her response? "Eeny meeny miney moe, catch a tiger by the toe. If he howlers, let him go, and you shall not be called IT!" And then proceeded to down the "not-it" medicine. "Mylanta! My-pwednisone! My-tovaquone!"

I should add that we had to Eeny Meeny Miney Moe three times. So even when the "My-tovaquone" stood alone, it got Eeny Meenied.

In a weird way, I'm going to miss this. :)

Love,
Katie

Wednesday, December 21, 2005 5:05 EST

Hunter is in the new Dana-Farber fundraiser video! You can see her here. The picture was taken when she was 21 months old, that's her with the green St. Patrick's Day 'do-rag covering her (then) cute little bald head. :)

Love,
Katie


Monday, December 19, 2005 5:59 PM CST



Two years. 24 months. 104 weeks. 730 days. That’s how long it’s been since our journey started.

Two years ago today is when I first noticed the petichiae on Hunter that scared me enough to bring her to the ER. Two years ago tonight, Children’s Hospital sent an ambulance to the hospital we were at to take us back to Children’s. Two years ago, Mike and I got no sleep as we sat with Hunter waiting to find out what was going on. And tomorrow at about 6AM, it will be two years since Dr. Jason came into the little room in the ER at Children’s to tell us that Hunter had leukemia.

Two years later, I still remember every bit of those first few days. How it wasn’t until they brought us up to 7 West, the oncology floor, and I saw my first little bald head, that it all seemed real. How Dr. Jason and Dr. Silverman sat us down that night and explained the chemo protocol. How we had to glove up to change Hunter because the chemo gave her toxic pee. How I could smell the chemo on her skin when I held her. How we got a crash course in hematology and started to comprehend the CBC’s we’d get each day. How happy we were when her CBC on Christmas Day came back showing zero blasts. How when her hair began to fall out, we cut it short, and saved a lock. How much Hunter loved to ride in the little car, round and round the 7th floor ~ and how mad she got when I’d bring her back to her room because my back was killing me from bending down to push it. How excited we got the first time her achy little legs were able to make the walk from her room to the playroom, just two doors down.

And mostly, how impossibly long two years of chemo seemed.

And yet, here we are, two years later. We are different people today than we were two years ago. Sometimes I wish to have my naivety back, to believe that if I do my job as a parent, I can protect my children from ever having anything bad happen to them. But often I think that this sledgehammer over the head called cancer has given me a perspective on life that I’m very thankful to have.

Don’t get me wrong, I’m not grateful for cancer. I hate cancer. But I am grateful for the people we’ve met over the last two years that I never would have known, if it wasn’t for cancer. I am grateful that Hunter is young enough that the burdens of fear and worry are on Mike’s and my shoulders and not on hers. I am grateful that it’s much easier to decide what’s worth worrying about now, and what’s just small stuff. I am grateful that I’ve learned to live in the moment and appreciate each day as it comes. I am grateful that I remember to tell my kids just how much I love them, every day.

And while I know that there’s a chance that this journey is not yet over for us, right now I’m grateful for just 27 more days of treatment to go.

Happy Anniversary Hunter… two whole years of KICKING CANCER’S BUTT!

Love,
Katie

Monday, December 12, 2005 6:11 PM CST

Living with cancer teaches you a lot about the people in your life. Some lessons warm your heart, like when friends and relatives step up: who ride the Pan-Mass Challenge in your child’s honor; who donate to the Jimmy Fund; who are there for you in other small and special ways, such as babysitting in an emergency, bringing over dinner, or even just listening when you need to vent.

Some lessons are painful, like finding that certain friends would rather check out on you than stick with you in difficult times.

But in our experience, for every ‘friend’ that we’ve lost through this experience, there are many unexpected people that have stepped up. People we barely know, or sometimes who we've never met, who take the time to send cards and little gifts for the girls, who sign the guestbook, who stop me when we meet just to ask how things are going.

Yesterday, I was just back from a run, feeling kind of achy and crabby because it was a lousy run. Then the doorbell rang... and as I walked to the door to answer it, I noticed a crowd of cars in the driveway, and a bunch of kids on my front walk.

I had no clue what was going on. When I opened the door, a beautiful little girl handed me a huge plate of cookies and baked goodies, and said with a big smile, “We’re from St. John’s Church. We heard you’ve had a tough year, and we wanted to stop by and let you know we are thinking of you and praying for you.”

I was dumbfounded... we don’t go to St. John’s? How are all these kids standing here on my front steps? And then I heard a voice, “How’s Hunter doing?” It was Hayley’s soccer coach, Coach Harry, and his wife Judi. They are Sunday school teachers at St. John’s and had asked their students to bring in baked goods for families they thought could use a lift.

Well it sure did bring a big smile to our faces. What a sweet Christmas surprise!

I want to say to Harry, Judi, and their class... thank you.

Thank you Max, Justin, Dean, Alicia, Richard, Sarah, Briana, Ryan, Jackie, Morgan, Corey, Alyssa, Cassie, Hanna, Karl, Giovanna, Nick, Ryan, Brandon, Craig, and Kendra.

And thank you to the moms and dads that baked and drove the kids to our house. Your kindness was an unexpected and welcome gift, and the cookies are delicious too!

As much as cancer STINKS... we feel very blessed that through Hunter’s battle, we have met some amazing people. Actually if you are reading this, know that we also consider you as one of our blessings.

Love,
Katie

P.S. Please keep Alexia and Cameron in your thoughts and prayers.

Wednesday, December 7, 2005 5:05 PM EST

Q: What are the 4 best words in the English language?

A: Absolutely. No. Unusual. Cells.



Dr. Jason called me in my car as we were driving home from clinic today. "Absolutely no unusual cells." And I think I breathed for the first time in 16 days. :)

The only concern now is that the lack of weird cells is a temporary result of the chemo that she got during her lumbar puncture 3 weeks ago. She'll get an end-of-treatment bone marrow aspirate and another LP in 6 weeks, and assuming that is clear, probably one more after she's off treatment, just to be sure. So we're not completely 100 percent out of the woods, but we'll take it!!!

Pathology also came back with the official all clear on her bone marrow... so we are celebrating here!! Champagne or Gatorade anyone?



Love,
Katie



Tuesday, December 6, 2005 8:55 PM EST

News... No News...

Hunter had her LP and BMA (bone marrow aspirate) at Children's this afternoon. I was so amazed, NOTHING fazes this kid... we put her in a bed in pre-op, changed her into johnnies, a bunch of strange doctors (sorry, not strange doctors... doctors that were strangers to her!) came by to talk to her and check vitals, and she didn't blink an eye.

I told her Dr. Jason was coming to give her some sleepy medicine and her response was just, "OK." I don't know if I should be incredibly proud of her or a little sad that she just accepts this kind of thing. Probably a little of both.

I was able to be in the OR until she fell asleep. She was too cute laying on the table with her Pony and her stuffed Stitch doll (that one of the pre-op nurses had dressed in a matching johnny and booties!)

Dr. Jason came and found me in the waiting room afterward, just as I was starting to worry about how long the procedures were taking. But the great news is that what held him up was that he was checking on Hunter's bone marrow and it was ALL CLEAR! So that is great news.

As for the spinal fluid... well hopefully we'll know something tomorrow. We'll be in clinic for Hunter's chemo and if there is any news, Dr. Jason promised to come find us.

Thanks so much to everyone that is keeping us in their thoughts and prayers, and thanks for all the entries in the guestbook today, wow.

Love,
Katie

Monday, December 5, 2005 12:49 AM CST

We had our usual clinic appointment this morning. No chemo since we don't want to do anything that might distort the results of tomorrow's LP.

The LP got switched from 10AM to 3:30PM... which means no food after 7AM and no Gatorade after 12PM for Hunter... FUN!! Try explaining to a 3 year old why she needs to be hungry and thirsty all day. (At least since we didn't start her chemo, she won't be on STEROIDS and not allowed to eat... that would *not* be pretty!)

On the bright side, we are supposed to get hit with 3-6" of snow just in time for the commute into Boston in the morning. So hopefully by the time we hit the road, the plows will have done their thing... and we won't have to deal with morning traffic either.

Because the LP is so late in the day, it will be too late to get her chemo and start her cycle, so back we go to the Jimmy Fund on Wednesday for her chemo.

We left her port accessed after her blood draw for labs this morning, and she'll stay accessed until Wednesday after her chemo. Which means no bath until Thursday morning... ew!!

I will update when I know anything after Hunter's LP tomorrow. Probably Wednesday at the very earliest. Please continue to think good thoughts and say prayers that this is all a false alarm.

Love,
Katie

Saturday, November 26, 2005 5:40 PM EST

OK I had updated earlier with a rather self-indulgent whine... but I've not been feeling good about that update so BAM! It's gone.

Instead, go read Kendrie's journal on the Crap Sandwich. It's funny and spot-on true.

And please keep some other kids in mind who are having a rough time right now.

Libby, Baby Donovan, Little Alexia, Keegan, and finally, please remember Clare's family. There is a pretty amazing entry in their journal right now.

Love,
Katie (hoping for the smallest possible serving of crap sandwich!)

Wednesday, November 23, 2005 8:42 AM CST

Since my mind is still a little foggy, I'm going to plagiarize myself and share an updated version of my last year's Thanksgiving thoughts...

***

I guess this is the time of year that we all sit back and reflect on how much we have to be thankful for. This year I find I'm running out of fingers and toes on which to count my blessings. I suppose that sounds ironic considering the reason we even have this site in the first place is that my baby has cancer. But there’s a poem that does a pretty good job of summing up what cancer cannot do.

“Cancer is so limited… it cannot cripple Love. It cannot shatter Hope. It cannot corrode Faith. It cannot destroy Peace. It cannot kill Friendship. It cannot suppress Memories. It cannot silence Courage. It cannot invade the Soul. It cannot steal eternal Life. It cannot conquer the Spirit.”

And in fact, cancer actually did a pretty darn good job at whacking us hard over the head and opening our eyes to all the good things around us. I wish to the bottom of my soul that God had allowed us a different method for discovering this epiphany, but we all know He does things His own way.

Two years ago on Thanksgiving morning was the first time Hunter's leukemia showed its ugly face. She woke up that day with a fever and her eyes were nearly puffed shut. In our infinite wisdom, we thought she had picked up a little bug, and with some Ibuprofen and Benadryl, she recovered enough to enjoy dinner with the family. The next day, we raced home from New Hampshire to get her into the pediatrician, who diagnosed her with an ear infection. That began nearly a month of puzzling low grade fevers, increasing exhaustion, and leg pains, and eventually the petichiae that got her properly diagnosed at Children’s Hospital on December 20, 2003.

This year, after 23 months of chemotherapy, we have our little Troublemaker back. To say we’re thankful… well that just doesn’t even begin to cover it. As I watch her running and playing in her Dora costume and bossing both of her sisters around, it seems nearly impossible to believe that there could still be leukemia lurking somewhere in her perfect little body.

We are grateful for the wonderful oncologists at Dana-Farber, especially Hunter’s beloved Dr. Jason, who are doing everything in their power to chase down every last leukemia cell and make sure that Hunter lives a long and healthy life. We feel lucky that we've had Dr. Jason on our side since Day One.

I am thankful that she has handled her chemo well overall and I pray that continues. Even with this latest relapse scare, we know that we are in the best of hands and that we will get through this, whatever our path may be.

Our blessings this year come in all shapes and sizes… I am grateful for my sweet baby Taylor, The Cuteness. I've never met such an easygoing child. Lately her sole purpose in life seems to be trying to make the rest of us smile... well that and to eat every miniscule piece of fuzz and junk that she magically locates on the family room floor five seconds after I've finished vacuuming.

I am thankful for my beautiful Hayley... and her obsession with all things Princess. Frankly I think she is planning to grow up, marry a prince, and move to a nice little castle in the suburbs someday. I’m not about to tell her otherwise.

For Mike… I cannot begin to imagine my life without him. How lucky I am that he just happened to be visiting our friend Chem that day in February 12 years ago. Who knew I’d go to a party and meet my future best friend and love of my life that night?

For my mom… who has been there at the drop of a hat for us, especially over the last two years. She’s an overachiever at the part of the Grandma job description that reads, “spoil grandchildren rotten.” Lucky kids.

For my mother and father-in law… who, from 1500 miles away, have always found a way to let my girls know how much they are loved.

For the family and friends that have been there for us for the last two years… and for the new friends we’ve met at clinic, and online through ALL-Kids, CaringBridge and Cancer Warriors. If you are reading this page, know that you are included in this category.

For the amazing group of women in my August 2000 playgroup… who have offered unwavering support in so many ways.

What else… good counts, blood and platelet donors (thank you Uncle Chris), Cheerios and McDonald's chicken nuggets, Princess fruit snacks, my laptop, our family and friends, TiVo, the Dana-Farber Marathon Challenge team and the opportunity to run the Boston Marathon (thank you Laurie and Jon), jogging strollers, the Pan-Mass Challenge, funny steroid cravings, clear spinal fluid (we hope and pray), digital cameras, reality TV, Dora the Explorer, Strawberry Shortcake, and Kim Possible DVD’s, living so close to Dana-Farber and Children’s Hospital, being able to shop online, our family and friends (have I mentioned them?), Super Sibs and Cancer Warriors, Make-A-Wish and Give Kids the World, Noggin, Caffeine-Free Diet Pepsi, my cute little pink iPod, the Lance Armstrong Foundation and those little yellow bracelets that are everywhere now, Gatorade and more Gatorade, friends and complete strangers that have tirelessly raised money to find a cure for cancer, and for those little boo-boos that can still be healed with a kiss…

That’s just the tip of the iceberg. I have run out of fingers and toes for counting (and this year, unlike last year when I was 8 months pregnant with Taylor, I can actually SEE my toes!)

Happy Thanksgiving Everyone.

Love,
Katie

Tuesday, November 22, 2005 6:50 PM EST

I am absolutely overwhelmed by the outpouring of support here. Thanks to each and every one of you who is keeping our family in your thoughts and prayers. I was just reading the guestbook and was so very touched by all of you that posted.

We are doing OK. A few emails back and forth with Dr. Jason last night, some sleep (such as it was), and a mind-clearing run in the pouring rain today, and I feel like I've got my feet back under me.

And now we wait until December 6th and the next LP. We will celebrate Thanksgiving, put up our Christmas tree, and do our best to forget about the little dark cloud that is following us around. We will hope and pray for the best.

And if the news is bad, we will suit up and get ready to do some cancer butt-kicking all over again.

Love,
Katie

Monday, November 21, 2005 3:11 PM CST

This is a very difficult journal entry for me to write.

Hunter may have relapsed.

I can’t believe I even just had to write that line.

We just got back from clinic. It’s not a normal clinic week for us, but I took Hunter in to get her flu shot. While we were there, our onc came and got me and said, “I need to talk to you about last week’s lumbar puncture.” I felt like I’d been punched in the gut, you know that any talk about an LP can’t be good.

As it turns out, while the fluid looked clear under the microscope, when the pathologist spun it down, there were white blood cells there. Enough to cause concern. But they aren’t ready to call it a relapse yet.

In 2 weeks we go for another LP. If there are cells there they will stain them and look for leukemic markers. If there are no cells… great… but she’ll have another LP 6 weeks after that to make sure that it’s not a false negative caused by the chemo during the LP she had last week. Ironically, the date of that potential 2nd LP is supposed to be her first day of off-treatment life.

As you can imagine, I am feeling really scared right now… scared isn’t even the word for it. More like stone cold terrified. The odd thing is that I was able to keep it together while we were at clinic and then when we were driving home it occurred to me that if she has relapsed, whether we go with another 1.5 years of chemo, or transplant, she will lose all her beautiful hair again. Then I just cried like a baby.

Please keep us in your prayers, I don’t know how I’m going to get through the next 2 weeks with my sanity. Thanksgiving was already going to be tough since it’s the 2 year anniversary of her first symptoms. I keep looking at her and how healthy she looks… I can’t believe this is happening. This coming 8 weeks was supposed to be our countdown to off-treatment, not a gut wrenching leukemia watch.

On the way home, Hunter (who knows nothing about any of this) said to me out of the blue, “Bad things is not FAIR!” She’s so right. Bad things is not fair.

Love,
Katie (completely and utterly devastated)

Sunday, November 20, 2005 7:25 PM EST

I am so excited to announce our new website, Hope Shines! is up and running!! I am selling beaded jewelry, including the Hunter's Hope Childhood Cancer Awareness bracelet. All of the profits from the Hunter's Hope bracelet will go towards my fundraising for the Dana-Farber Cancer Institute.

I just wanted to share a really cool moment (well more like a really cool 56 minutes) I experienced yesterday. I went for my first group run with some other Dana-Farber Marathon Challenge first-timers. I met some really great people, and we ran a 6 mile loop on the banks of the Charles River in Cambridge. It was about 35 degrees, a perfectly crisp autumn day, the smell of fallen leaves, clear blue skies, and college crew races were going on right next to us on the Charles. It was exhilarating. THAT is what living in New England is all about.

(Someone please remind me about this fondness for New England living 2 months from now when I'm whining about how cold it is and how much I hate running in the snow!)

Love,
Katie

Tuesday, November 15, 2005 1:12 PM CST

I'm going to postpone the Make-A-Wish update... would you believe I'm STILL editing pictures a week later? Thank heavens for digital cameras, I can't imagine how many rolls of film I'd be developing if I had a 35 millimeter!

We do have news though... yesterday Hunter had her very LAST scheduled lumbar puncture. As we say on my ALL-Kids group, FINAL SPINAL!! It was a bit of a rough one for her, she was a little wiggly and she seemed to feel it more than usual, despite getting an extra helping of Versed. But it is O-V-E-R!!

I think maybe the extra Versed made her sick though, because just as we were sitting down for her post-LP celebratory McDonald's chicken nuggets, she got pale as a ghost, screamed that her head hurt, and proceeded to barf all over me and all over the snack room. Fortunately she'd only had Gatorade so it was just Gatorade coming back up, but the poor kid looked awful. We got her into a bed and after a failed attempt to eat a chicken nugget, she proceeded to take a nice long nap... actually she fell asleep still trying to eat the chicken nugget, it was pretty darn cute.

During Sleeping Beauty's siesta, Dr. Jason popped his head in to say that her spinal fluid was all clear!

I want to thank those of you that have already made a donation to sponsor me in the Marathon Challenge, it's very much appreciated!!

I also want to thank a very special group of friends for an incredibly thoughtful gesture they made. A few weeks ago I was talking about Bravery Beads with my friend Stef. Bravery Beads are given to a child in treatment, one bead for each little brave act. There are different beads for things like port accesses, LP's, bone marrow aspirates, injections, blood transfusions, oral medications, etc.

I told Stef that I loved the idea of Bravery Beads and wished I'd started it when Hunter first went on treatment, because after nearly 2 years of chemo, including daily oral meds (that's 758 days, not even counting the fact that she gets up to 5 doses a day!) the beads would cost a fortune.

Well these amazing friends of mine decided that after all Hunter's been through, she deserves her Bravery Beads. They all got together and pooled their money and gave it to me this morning... enough to buy Hunter 2 years worth of Bravery Beads!! This will be such a neat keepsake for her. Someday when all of this is far behind her, I picture her taking out her Bravery Beads and showing her friends all her little badges of honor. I can't tell you how much it means to have friends like this... ones who really 'get it'. I cried like a baby when Stef told me what they were up to.

So thank you: Gwen, Jeanette, Amy, Jenna, Carla, Kara, Sabrina, Cathi, Jenny, Stefanie, Denise, Cathy, Lori, Lara, Bethany, Laura, Becky, Bridget, Stef, Beth, Lori, Nan and Annette. Your kindness means more than I think you can imagine.

Lastly, prayer requests. It has been a very difficult week in our little ALL-Kids community. Libby and little Alexia's families both received the devastating news that their princesses have relapsed. Keegan's family is awaiting news as to whether some suspicious cells in his spinal fluid are indicating relapse or not. And Baby Donovan is continuing to struggle with the awful side effects of his transplant.

Please keep all of these families in your prayers.

Love,
Katie

Friday, November 11, 2005 7:09 PM CST

We are BACK from Hunter's Make-A-Wish trip... I am working on editing photos, a new update is on the way!

Love,
Katie

Thursday, October 20, 2005 3:20 PM EDT

My training partner is a slave driver! We went out for our run this morning and were going to run in a loop. Go right, and we run the aforementioned monster hill downhill, and make up the altitude in a series of smaller rolling hills. Go left, we don't have any big downhills, but the monster hill is UP. Pushing nearly 100 lbs of kids and stroller, I figured I'd be lazy and go right.

Hunter wouldn't hear of it. "GO LEFT!" So we went left.

When I'm pushing the jogger, I usually walk through my water breaks, because I'm not coordinated enough to steer that thing one-handed at speed. Every time I stopped to drink, Hunter would yell, "let's go mommy, ready, set go!"

Little tyrant.

Love,
Katie

Tuesday, October 18, 2005 11:11 PM EDT

I got a phone call tonight... I'm on the Marathon Challenge Team!!

Back to the coincidences theme... unbeknownst to me, my brother Jon emailed me about 10 minutes before I got the phone call, asking if I'd heard anything yet. As soon as I got off the phone, I logged into email to tell him and Laurie about it, and there was his email.

I was so happy to respond to him with a big old YEAH!!!!

I am so excited... Boston is the granddaddy of all marathons as far as I'm concerned and I'm going to be running it in six months in honor of my little sweetie. :)

Love,
Katie (proud to be Running for LIFE!!)


Sunday, October 16, 2005 7:11 PM CDT

At what point do a lot of little coincidences add up to God pointing you in a new direction?

Coincidence #1: A few weeks ago, I was out for a run with Hunter and Taylor in the jogger. I had been contemplating riding the Pan-Mass Challenge next summer to raise funds for Dana-Farber. During my run, I realized that I really love to run with the girls and would miss having them as my training partners if I did my training on a bike. (Yes, I know about those bike trailer things but they kind of scare me.)

Got home from that run and checked email, and there was a note from my brother’s girlfriend Laurie, with a link to the application for the Dana Farber Marathon Challenge. Perfect! I applied to get onto the team, to run the Boston Marathon to raise funds for DFCI. (Haven’t heard if I’ve made it or not, think good thoughts for me! )

Coincidence #2: While I’m waiting to find out if I made the team, I’ve begun to build my base mileage up. Last Sunday I was out for a run without my iPod because it was raining. Since I had no tunes to distract me, spent the 5 miles thinking... and started thinking about this cool bracelet I have. I had it made for me, it’s got gold crystals (for pediatric cancer), a ribbon charm (for awareness), an orange crystal charm (for leukemia), a purple charm (Hunter’s birthstone), and a pink heart charm (because I’m the mom who loves her to pieces). I thought it would be cool if I could learn to make similar bracelets and sell them, to raise more funds for DFCI.

That afternoon, I went to my mom’s house to help her pack for her move. I was wrapping some of her wall art with newspaper and came across an article in the Boston Globe. It was about two women who make jewelry and sell it to raise funds for cancer research. Hmm. But one little problem… I don’t know how to make jewelry.

Coincidence #3: Friday I tried out a new salon that just opened here. It was in a complex of old mill buildings, and I decided to drive around and see what else is there. In the back of the complex, I found a store that sells beads. Went inside, and asked if they give classes. Yes, they do. Looked at the schedule and there was a beginner class that afternoon. The only beginner class in the whole month! It was Mike’s day off, so I signed up and took the class.

Made a bunch of bracelets last night, I need to work on a marketing strategy now. :)

Coincidence #4: Out for another run today, and it was insanely windy. Got to a point in the run where I could either do six miles as I’d originally planned, or I could wimp out and head the other direction home and do three miles. As I was contemplating letting myself off the hook, my iPod, which was on a random shuffle, decided to play the song “I Run For Life” by Melissa Etheridge. Okay, six miles it is!!

There is a huge ugly hill about 4.5 miles into this route and I was tired and needing inspiration when I got there. Again the iPod came through, with “For Boston” by the Dropkick Murphys. That song gets me jazzed up anyway, but considering I’m running in the hope of doing Boston in April… well that was cool. Song ended halfway up the hill and iPod picked “The Impression That I Get” by the Mighty Mighty Bosstones. It’s an awesome ska beat and the words always make me think of this whole cancer experience, ours, and others who have had it so much worse than we do:

Have you ever been close to tragedy
Or been close to folks who have?
Have you ever felt a pain so powerful
So heavy you collapse
No? Well...
I've never had to, knock on wood
But I know someone who has
Which makes me wonder if I could
It makes me wonder if I could
I've never had to, knock on wood
And I'm glad i haven't yet
Because I'm sure it isn't good
that's the impression that I get

Have you ever had the odds stacked up so high
You need a strength most don't possess
Or has it ever come down to do or die
You've got to rise above the rest
No? Well...
I've never had to, knock on wood
But I know someone who has
Which makes me wonder if i could
It makes me wonder if
I've never had to, knock on wood
And I'm glad I haven't yet
Because I'm sure it isn't good
that's the impression that I get

I'm not a coward,
I've just never been tested
I'd like to think that if I was,
I would pass
Look at the tested and think there but for the grace go I
I might be a coward,
I'm afraid of what I might find out
I've never had to, knock on wood
But I know someone who has
Which makes me wonder if i could
It makes me wonder if
I've never had to, knock on wood
And I'm glad i haven't yet
Because I'm sure it isn't good
That's the impression that I get

(It’s a great song, I’d tell you to go to iTunes and check it out, but if you do, make sure there are no little ears in the room… the version on iTunes is live and the lead singer drops an F-bomb right before the song starts!!)

So I guess today, God was in the iPod for me. :) And I think He wants me to run Boston for DFCI (Marathon Challenge people, are you listening?! God wants me on the team!!)

And I think He’s cool with the bracelet idea too. Now if He would just give me some inspiration as to how to go about selling them… or is that taking this whole Divine Intervention thing a little too far?! :)

Oh, while I’m at it, I’d like to publicly thank God for finally showing us the sun. Ten straight days of rain here and I was beginning to think along the lines of building an ark! Even with the crazy wind today, it was so sweet to be outdoors enjoying fall in Massachusetts.

Hmm... just realized I wrote an entire update about ME ME ME... perhaps you'd like to hear how Hunter is doing?

Other than stir crazy like the rest of us because of the rain, she's great. The craving du jour turned out to be Cheerios. For breakfast, lunch, dinner, and in a little baggie for snacks. Much better than mayonnaise or cream cheese by the spoonful for sure!

Please don't forget to pray for Baby Donovan. Last week he achieved remission (YEAH!!!!!!) and he's off to Duke for his cord blood transplant this week.

Love,
Katie

Monday, October 3, 2005 9:11 PM EDT

Monday, Monday, Jimmy FUN Day!!!

The whole ride to Jimmy Fund today I kept hearing little giggles from the back seat of the van. When I'd ask Hunter what she was laughing about, she'd say, "Dr. Jason is going to be SO surprised to see me in the newspaper!!" (Have I mentioned the Dr. Jason crush?!) :)

But we started steroids tonight so I fully expect the child that wakes up tomorrow morning will more closely resemble a cranky Tasmanian Devil than the sweet little princess she was today.

Speaking of steroids, here's an example of how crabby she gets... we were in the car a few days ago, and Taylor was singing a 9 month old baby song...

Taylor: "Ba ba ba ba"
Hunter: (with hands over ears) "Stop it, stop it, Taylor!!"
Taylor: (oblivious to the protest) "Ba ba ba ba"
Hunter: "Stop it!! STOP being a SHEEP!! You are a BABY, not a sheep! STOP SAYING BAA!!"
(At this point Hayley and I lost it laughing)
Hunter: "It's not FUNNY!!! She's not a SHEEP!!"

That said, she was (mostly) in a great mood at clinic today, so I took some pictures at Jimmy Fund today so you can get an idea of what it's all about.

Hunter's beloved Dr. Jason... He's getting married this weekend, we wish him and Shannon all the best!! (Well Hunter still thinks he's her prince, but she'll get over it...)


Playing with the wagon... the front desk is in the background.


Playing in the boat play structure:


The Cuteness:


Getting her chemo with our nurse Kathleen (note the smile... "woo hoo, I'm getting chemo!!!"):


Hunter was also an Honored Child in this year's Light the Night in Providence. I will post pics next update (so as to not incur the wrath of the dial-uppers out there, LOL)

Please don't forget about our buddy Baby Donovan and sweet Clare's family.

Love,
Katie





Thursday, September 29, 2005 7:22 PM CDT

Guess who's on the FRONT page of our local paper today?



(There is a larger version of this page in the Photo Album if you'd like to read it.)



I'm so proud of this kid!!

Please don't forget to keep sweet Baby Donovan in your prayers.

Update: Please also pray for Clare's family. Clare also had ALL. She relapsed in May over a year after finishing her chemo. She underwent a bone marrow transplant on July 18. She developed complications in her lungs and was diagnosed with pneumonia on August 5. She had been in PICU since then. Sadly, the damage to Clare's lungs was just too much for her little body, and I just found out that she earned her angel wings on September 29.

Please hug your children a little tighter and a little longer today... we never know what tomorrow has in store. Godspeed sweet Clare.

Love,
Katie

September 16, 2005 7:55 PM EDT

I need a favor of all of you. There is a sweet little guy named Donovan who also has ALL. His mom Melissa and I are friends through our ALL-Kids support group.

Baby Donovan is just 9 months old, a few weeks older than our Taylor. He was diagnosed with ALL when he was one month old and has spent most of his life on chemo.

Donovan relapsed recently and his parents have decided to take him to Duke for a cord blood transplant. But the doctors in Indy need to get him back into remission first.

Melissa just found out that the very promising drug Clofarabine failed to get Donovan into remission on the first try.

They are feeling scared and discouraged right now and I'm asking that you all keep that sweet baby and his family in your thoughts and prayers.

Please go sign his guestbook and let his family know you're out there praying.

Thank you.

Love,
Katie

September 12, 2005 6:40 PM EDT

I have an announcement. (Insert drum roll here).

We are back from clinic. With just 6 more 3 week cycles of chemo to go, Hunter is finally at 100 percent of all her chemo!!

For anyone that was with us last summer during the weeks and weeks of neutropenia, the reduction of her chemo to an unheard-of-at-Dana-Farber-40 percent, and the eventual bone marrow aspiration (that was clear, thank GOD)... you will understand just how much it means that she is at 100 percent now.

Yeah, once again it feels weird to celebrate being able to pump MORE toxic chemicals into my baby's body... but we've only got 18 more weeks to make sure we get every single rotten leukemia cell, so the more she can handle for these 18 weeks, the better.

OK I'm off to make dinner. Steroids start tonight, should be interesting what kind of a week it will be... cream cheese? Macaroni & cheese? String cheese? "Messy" Cheese (a.k.a. shredded cheddar)?

Are you seeing a theme here? :)

Oh and about the music... I know it's been on here for 3 months and it's really time I change it, but I just dig this song (come on, you're dancing in your computer chair right now, admit it!) and the lyrics are so fitting... OK maybe next update I will find something new.

Love,
Katie

September 11, 2005 10:24 AM EDT











Wednesday, September 7, 2005 7:47 PM CDT

The Great Fish-Stick Standoff

Score: Hunter - 1 Mom - 0

We have been having some issues with Hunter lately 'ordering' up some food and then refusing to eat it. Now during steroid weeks, I understand. But when we don't have steroids to blame, in my opinion, it's unacceptable.

Tonight:
Me: "What do you want for dinner?"
Hunter: "Fish Sticks"
Me: "How many would you like?"
Hunter: "Five"

On goes the oven, in go the fish sticks, and 11 minutes later, voila! Five fish sticks ready and waiting to be consumed.

Me: "Hunter, dinner!"
Hunter: "What did you make me?"
Me: (proudly) "Fish sticks! Five, just like you wanted!"
Hunter: "NO! I hate fish sticks! I want pasta!"
Me: (mistakenly trying to be reasonable) "But that's what you asked for."
Hunter: "I don't LIKE them, I don't WANT to have fish sticks!!!" (Tears ensue)
Me: (in an attempt at tough love) "You asked for five fish sticks, you will eat those five fish sticks, or you will sit at the table all night!"

About 90 minutes later she was still sitting, giving me death stares. Finally:

Hunter: "I ate my five fish sticks!"
Me: "I'm so proud of you!"

Walk into the kitchen to find... one tiny bite out of each of the five fish sticks.

Leave it to Hunter to find a loophole... ;)

Other than our dinner drama, things are going well for us. Hayley started kindergarten last week. She loves it. It's amazing how quiet it is around here when Hunter has nobody to fight/play with!

We are down to 18 weeks of chemo left. I consider it a big milestone that we can actually count chemo weeks with fingers and toes... on ONE person!

My beautiful family... (can you tell that Hunter didn't want to sit next to Taylor and was about 2 feet away from her so I had to edit the picture to make it look like she was sitting next to her sister... and again... it's not a steroid week!) She's a cute little monster anyway. :)



And I wanted to share some photos of a special trip we had a few weeks ago. Hunter, Tate, and Chris all have ALL and our families met in clinic. We got together for a zoo outing and had a ball!

Chris:


Hayley with Chris and his sister Brenna:


Hunter, Brenna and Hayley:


The Gang (Collin, Marisa and Tate; Brenna, Hayley, Chris, Hunter)


Aren't they all just beautiful?!

Love,

Katie

Saturday, August 6, 2005 7:58 PM CDT

Who's this guy with his arm around me? Well as far as I'm concerned, he should practically have a halo over his head. The fact that I'm posting this pic despite how scary I look... well that's saying something.

This guy is Billy Starr. And this guy is proof positive that ONE PERSON can make a difference. 26 years ago, after his mom died of melanoma, Billy and some buddies decided they wanted to raise some money for cancer research. They got people to pledge money, hopped on their bikes and rode. They raised $10,000 and donated every penny to the Jimmy Fund. Billy promised that he would continue the rides and would raise more money every year. He wasn’t kidding.

Today that little bike ride has turned into the Pan-Mass Challenge. Four thousand riders, who raised $20 MILLION dollars last year alone. This year they are hoping to raise $21 million. Dollars. Twenty-one million of 'em. And it all goes to Dana-Farber and the Jimmy Fund. Because one guy had an idea and saw it through. They have raised $122 million to date. How awesome is that?

Our friends Dennis and Lori are riding the PMC this weekend, as Hunter's "Pedal Partners". We were lucky enough to meet up with them at the lunch/water stop this afternoon. Dennis and Lori are parents themselves of two little people, and both of them work outside the home. But they made the time to raise funds and train for the PMC. Together they raised $7,000 for the Jimmy Fund!



I realize Hunter looks a little bizarre in these pics… she got her face painted as “a princess”. Mike says she looked more like Mimi from The Drew Carey Show. I have to agree, she’s definitely looking more Mimi than royalty to me…

In non-PMC related news, last weekend was the annual Jimmy Fund Summer Festival. I got to flipping through some old photos and was struck by what a difference in Hunter between last year’s Summer Festival and this one. She’s gone from pale, bald, steroid cheeked baby with no appetite; to a vibrant, mop-headed, tall and beautiful girl who can put away 3 hot dogs before lunchtime! (Gotta love steroid weeks…)

Last year... and this year:



As you can probably tell, I am feeling so incredibly lucky and blessed lately. I have so much to be thankful for in my life.

Please say a prayer for our friend Chris, who is home in hospice. She is one amazing young woman that has been battling inoperable and uncurable stomach cancer since April 2004. Read a few of her journal entries and you will understand how extraordinary she is.

UPDATE:
Chris earned her angel wings on Saturday night. I don't think I've ever quoted another CB parent like this before, but Trevor's dad said it so eloquently, with Trevor's mom's permission, I'd like to share his thoughts on Chris:

For 16 months, Chris has fought her own battle against cancer, held her head high, and raised the spirits and hopes of countless others while doing so. Her prognosis was grim from the start – “inoperable and incurable” – but rather than wallow in despair, she raised the banner of Hope, and raised it in a way that would not be ignored. Her determination, her confidence that she would beat this, that she would win this war against cancer, was as indomitable as it was contagious.

Chris earned her angel wings last night at 11:30PM, surrounded by family and close friends, and if the thousands of worldwide supporters were anything like me last night, she was surrounded by internet friends from around the globe as we spent a sleepless night thinking of her, holding onto hope that there was a miracle in the works – because if there were ever someone deserving of that miracle, it was Chris.

I think the miracle WAS Chris.

It is strange to have grown so close, so attached, to someone you have never met in person. But I suppose for many of you, that is the case here as well. There are so many people who have come to support Trevor, who look forward to reading these updates (although I still struggle with why – Mr. MacDonald’s English class criticism has been fresh in my mind for 25 years) even though for a good number, you have never met Trevor in person. I thank you again for letting us into your lives, and into your hearts.

Well said. Rest in peace Chris, you will be greatly missed.

Love,
Katie

Sunday, July 24, 2005 8:00 PM EDT

OK for those of you that asked... the names of the kitties, they weren't named as of press time last week... but they have names now... here's a hint:

is

and

is

:)

- Katie


Monday, July 18, 2005 4:00 PM EDT

Life didn't quite seem chaotic enough with a 4 year old, a 3 year old, a 6 month old... and only one cat in the house.

So on Saturday we went to the shelter... and notched up the household craziness factor with these two little girlies:





It's once again sufficiently chaotic. We still miss Sammie but these two critters sure put a lot of smiles on our faces!!

- Katie

Wednesday, July 13, 2005 10:08 PM CDT

Well it’s been a week of ups and downs for our family. On Monday, I took Hunter to clinic while Mike took our sweet kitty Sammie to the vet. While Hunter was waiting to get a lumbar puncture, our vet put Sammie to sleep. She had been suffering kidney failure, and we know it was the right decision, but it hurts. I miss that little cat more than I can say. She was my first little "girl".

Hunter’s lumbar puncture went well until afterwards when we were sitting in the snack room at clinic and she suddenly started yelling that her head hurt, and then got very pale and woozy looking, and tried to pass out on my lap. I scooped her little self up and got her a bed in an infusion room, and Dr. Jason set her up with a dose of Tylenol. Most likely she just had a reaction to the sedation, but it was scary nonetheless!

Most importantly, her spinal fluid came back clear, and she has only ONE more LP to go!! (OK I have to confess I’m still a little nervous about losing our chemo blankie, but this is a big milestone!)

A little funny story about the LP… Hunter had been playing with Polly Pockets in the playroom just prior to going in to have her procedure. She decided to bring a Polly in with her. When the sedation kicked in and she started getting loopy, we laid her on her side as usual, and she was holding the Polly in one hand, looking at her. Suddenly she said, “look, there’s another one!” and started trying to grab the ‘other’ Polly Pocket. Poor little punkin was seeing double!! :)

She followed the Polly incident up with some ABC’s (that mysteriously ended at Q a few times) and a round of Old MacDonald Had A Farm, complete with ‘quack-quacks’ and ‘baa-baas’. Can I tell you, it feels good to laugh during such a rotten procedure?!

We are meeting our friends Chris and Tate from clinic at the zoo on Friday, it will be nice to get out and do something fun with these wonderful families we’ve gotten to know so well while sitting in the waiting room chairs (or the ridiculous snack room teeny tiny chairs) at clinic! :)

Love,
Katie

Monday, June 27, 2005 4:20 PM EDT

Hunter received a mystery birthday package in the mail this afternoon from "An Angel".

This is the only way I could think of to say Thank You!! Hunter loved the gifts... see the picture below... it is 90 degrees and 75 percent humidity here today (the temperature at which Native Massachusettsites begin to melt) and Hayley and Hunter are playing "camp-out" in the Dora The Explorer sleeping bag!! (Note their sweaty little heads...)



We are touched by your kindness (and apparently my children are touched by a slight case of insanity as well, LOL!)

- Katie

Thursday, June 23, 2005 10:02 AM CDT

Happy 3rd Birthday Hunter!!!!

Every birthday is a blessing but I think it's even more special for a parent of a child with cancer, because life has quite rudely reminded us that there are no promises. Each day is a gift and each milestone is a celebration.

Happy Birthday to my sweet girl. I love you SOOOO much... right up to the moon and back.



Love,
- Katie/Mom

Wednesday, June 15, 2005 9:02 PM CDT

A girl and her curls…

Things have been chugging along pretty well here lately, the early spring pollen has gone away, taking the stuffy noses and scratchy throats we all had with it.

It got warm… even HOT for a while here (hard to believe as I look out the window at a damp, 50 degree day!) and the girls were able to play on their playset, and in the pool and sandbox.

Hunter’s counts have been great (high, even) which means… more chemo… the way she’s going she may even make it to 100% chemo before she finishes treatment, who knows! Never thought I’d be saying that a year ago when she was neutropenic more often than not. (!)

The big news is (drumroll……)

Hunter, just a week shy of her third birthday, finally has enough hair for her First Ever Ponytails!! They are just barely there, but boy is she proud!! She loves to get in line with Hayley in the morning to have her hair ‘done’ too.

Ta-da!!!


And because I neglected to put a photo of The Sweetness in my last journal entry, I just had to include one this time.


Please check back soon, I am trying to put together something special for Hunter’s third birthday next Thursday, June 23!

Love,
Katie

Saturday, May 21, 2005 12:29 AM CDT

I’ve been feeling bad about that last cranky journal entry so it’s getting bumped early…

Last night we attended our local American Cancer Society’s Relay For Life event. There was a special Survivor’s Tent set up where all the survivors got special blue t-shirts, photos, appetizers, snacks, desserts, prizes, and lots of love!

Hunter was the smallest survivor there and so got quite a bit of attention. Somehow it always takes me by surprise when someone looks at her with sadness or pity in their eyes. I look at her and think, “what an amazing, funny, sweet, happy, joyful child, who is also busy kicking cancer in the butt!” Others look at her and think, “oh how sad, she has cancer.” I like my perspective better. :)

Well the pathetic little cancer patient ran around for 2 straight hours tonight. And I mean RAN. As in I (the person that ran a 26.2 mile marathon a year and a half ago) had a hard time keeping up with her! She had big grins and high fives for everyone. I was so proud of her. The kid can really work a crowd!

She was so funny during the speeches… every time there was applause she would applaud with everyone else… she had no idea what she was clapping for, but she clapped right along with a big grin on her face!

They gave all the survivors a medal and a chance to stand up and introduce themselves. Right after that was the survivors’ walk around the track. As we walked, I can’t even tell you how many people caught up to us and just wanted to say something nice.

And the luminarias… wow. The entire quarter mile track was lined with luminarias, and on the bleacher seats, they had them set up to spell out, “HOPE.” They turned off all the lights for the survivors’ walk and the candles lit the track. It was beautiful.

My hero:


Balloon thief:


Lucky mom:


- Katie

Tuesday, May 17, 2005 2:52 PM CDT

Well I had thought that this journal entry was going to go something like this:

“We are back from visiting family in New Jersey, we were so happy to see everyone, especially Grandpop, who is here from Florida. Last time we saw him 2 years ago, Hunter looked like this:



And Hayley looked like this:



We can’t wait to see him again along with Grandmom when we go to Florida for our Wish trip!”

But things didn’t exactly go as planned yesterday.

First, the home health care company sent us a new nurse. I am not sure where this lady’s area of expertise is, but I feel pretty darn confident in saying, it is NOT in accessing a port. She was so nervous beforehand, I should have seen this debacle coming. She managed to botch the first attempt, couldn’t get enough blood to fill the 2 vials, then was unable to get the port to flush. I called clinic and they said we’d have to re-access her. I think she was actually going to try to do this without re-sterilizing the site... I had to tell her she needed to sterilize again! By this time, the Emla (numbing cream) had worn off, and when the needle went in, Hunter FELT IT and was hollering like crazy, “you’re hurting me!!!”

It was absolutely heart-wrenching to have to sit there and hold her while this was going on. Add to that, this nurse didn’t have a clue about the needle we use or the dressing we use, and didn’t even take vitals like she’s supposed to.

I was BEYOND ticked off by the end of this visit. After she left I got on the phone with the home health care company and suffice it to say, we will NOT be seeing this woman again!!

So while all of this is going on, I’m noticing that Hunter feels pretty warm. She woke up with the sniffles so the fever wasn’t a huge surprise, but when I took her temp, it was high enough that we needed to go in to be seen at clinic. So instead of the family piling in the car to head down to New Jersey, Hunter and I hopped in the car and headed to Boston.

In hindsight I wish I’d taken her temperature first… then we could have just had her accessed at clinic… where they know what they are doing and have never made my kid cry!

Her counts were high enough that we didn’t have to go inpatient, thank heavens! We received an antibiotic infusion that covers her for 24 hours, and got sent home. So far today she’s been fever-free, keeping our fingers crossed that continues.

She doesn’t seem to be too bothered by her cold, it sure isn’t slowing her down any! And she hasn’t mentioned the port accessing fiasco once (though my blood pressure starts rising just thinking about it!) so in true Hunter style, she is just rolling with the punches.

We had Taylor christened on Mother’s Day. We were the only family there, which is unusual at our church. I think they normally baptize 8 babies every Sunday.

The girls have this rather strange thing they like to do when they are in a place that echoes… they yell, “A monster ate my toe!!” at the top of their lungs and then giggle like crazy. (I have no idea why.) Well with only us in the church the acoustics were just perfect… and Hunter got in a couple of good hollers before I managed to get her to pipe down. Man, you have never heard anything like it… her cute little LOUD two year old voice joyfully reverberating throughout the space... half of me was laughing on the inside and half of me was mortified.

The highlight of the service came when the priest, who is from Ghana, sang a song in his native language. Both Hunter and Taylor were absolutely mesmerized and just stared quietly as he sang.



So now Taylor’s all holy and I think it’s gone to her head. While she's still amazingly sweet and smiley, she’s also becoming quite a bit more opinionated lately. I think the other two are giving her lessons. I am SO in trouble.

- Katie

Wednesday, May 4, 2005 5:01 PM CDT

Warning... this ended up being sort of a stream-of-consciousness kind of journal... if you're looking for short and sweet, and even semi-literate... well this ain't it. :)

Hooray for great counts again this week Hunter... and your reward for this fantastic accomplishment? MORE CHEMO!! Stupid cancer...

So it's now May. And I'm starting to think about Hunter's third birthday next month (which will no doubt be a Dora theme... or Disney Princess... or Dora Princess...) And I suddenly realized that by her birthday, she will have been on chemo for more than half of her little life. How wrong is that?!

On the other hand, I also figured out that we're through 36 weeks of her Continuation phase of chemo... with 36 to go. Hard to believe I'm even thinking about the end of treatment, or that she's been on chemo for 17 months now.

I wonder how I'm going to explain some of her more rotten behavior once I can't blame it on steroids... the little princess is currently having a full-blown temper tantrum because I turned off Oobi. Oobi, for those of you who haven't had the pleasure, is a show on Noggin starring these freaky hands that have googly eyeballs attached to them. Sort of the 3-D version of Senor Wences - remember him? Anyway, today there was a new character, it was an upside down foot with eyeballs. It was just too creepy for me. I also have to wonder about the mental condition of these adults laying on the floor with their eyeball-wearing limbs flailing in the air. So the TV is off and the decision is not popular.

Anyway, my point (and I did have one, I think) was that the end is slowly coming into sight. OK I know January isn't exactly around the corner. And while the chemo is awful, it's also a security blanket. What happens when our chemo blankie gets taken away? And why am I sitting here fretting about the day we get to STOP putting toxic chemicals into my child's body?

See, this cancer is more than just a physical battle that my baby has to fight. It does weird things to you as the parent too. Stupid cancer...

But because cancer isn't allowed to be the boss around here, I want to add that if it weren't for stupid cancer, I wouldn't have met some of the most wonderful, loving, supportive, amazing people that are now a part of our lives. I also wouldn't have discovered and appreciated the deep-down goodness of some friends, family, and strangers who do things like knit sweaters, donate toys, send packages, volunteer, pray, give blood, run marathons or ride bike-a-thons to raise money for research.

In your face, stupid cancer.

- Katie

Saturday, April 16, 2005 4:43 PM CDT

Sorry it's been a while since we've updated again... Spring has FINALLY sprung around here, and the weather has been nice enough to spend some time outdoors. I've been doing my best to get the kids out and run them around as much as possible. (Tired kids = easier bedtime!!)

The first few times I took the girls out in our super new stroller, Taylor had this look on her face like, "hmmm... where did the ceiling go? And what is this bright light shining in my eyes?"

We had the girls' photos taken this week. Poor Hunter had just had chemo that morning and she's looking a little punky. Add to that, she really wanted no part of sitting and posing when there were so many fun props to play with in the hallway, and well... the rest of the photo shoot ended up starring Taylor.









We found out this week that Hunter will be an Honored Teammate for the Leukemia and Lymphoma Society again. She's the Honored Teammate for our chapter's spring season Mayor's Midnight Sun Marathon team, and for the fall she will be the Honored Teammate for the Dublin Marathon team. Oh how I wish we could be there to cheer on our runners!!

Again while things here are pretty darn great, we're asking for prayers for some of our friends. Please keep Molly and her family in your prayers as they continue to figure out their lives without Molly's dad around.

Our friend Cam just found out that he has relapsed again, one year after transplant, and just a few weeks after his one year checkup revealed a clean bill of health. This cancer is such an insidious, horrible, rotten beast.

And Katie is having a really hard time right now, with multiple complications going on.

Thanks for continuing to check in on us, it means more than most of you will ever know.

Love,
Katie

Thursday, March 31, 2005 7:24 PM EST

Even while our family has been blessed with another week of good health, we are again greatly saddened by another family’s loss. Our little friend Molly lost her beloved daddy in a horrible accident on Tuesday morning. Molly is also fighting leukemia and her mom Donna and I ‘met’ through our online ALL-Kids group.

I was telling Mike yesterday that it seems like families dealing with a child with cancer should get a free pass on any further tragedy in their lives. Unfortunately, God doesn’t give those free passes. Only He knows why something this terrible should happen to a good, kind, and loving family.

The messages of love and support you all have left in our guestbook have brought us so many smiles, and buoyed us when we were down. We read every single one of them and they mean more to us than you can imagine. Please share that love and support with Molly, her brother Billy, and Donna this week. They need it far more than we do right now.

Love,
Katie


Thursday, March 24, 2005 9:24 AM CST

I'm not complaining... really, I'm not. In the great scheme of things, this is no big deal. Heck, I have the only three kids in the country that didn't have a cold, a cough, or a runny nose all winter long. Hunter's doing great, we're healthy and happy. So I know I should not be whining about anything.

But may I just say,
ENOUGH WITH THE SNOW ALREADY!!!
On this third day of spring we woke up to another 10" of snow on the ground.

AAAAARGGGHHH!!!!!!

That's all I'm going to say on the subject.

Now from the Snowbound Frozen Tundra State of Massachusetts, may I direct your attention to The Golden State of Ali-Fornia. Yes, I said Ali-Fornia.

After a fast and furious email campaign spearheaded by Julianna Banana's dad, Terry, "The Governator" has declared next Monday "Ali-Fornia Day"!! Why? In honor of one amazing young Californian, Ali, who has been fighting this cancer beast for the last two years. And Ali's leukemia was truly BEASTLY to her. But she battled on, and will be officially off-treatment on Monday! Oh, and as if going OT, and having an official recognition from Ah-nold and the great state of California wasn't enough, there's the little fact that Ali turns 18 years old TODAY. Not a bad week! Please go wish Ali a Happy Birthday, a Happy End Of Chemo Day, or a Happy Ali-fornia Day... take yer pick or do all three.

Back to my family... boy we are just BORING after that. We have finally completed construction on our basement playroom. It's so nice not to be tripping over toys in every room of the house. We only trip over toys downstairs now.

The girls are looking forward to Easter and seeing the family this weekend. I am looking forward to sniping chocolate from their Easter baskets when they're not looking. Because if it's stolen chocolate, the calories don't count against me.

Happy Easter everyone.

Love,
Katie

Monday, March 7, 2005 8:58 PM EST

Hunter's spinal fluid is ALL CLEAR!! :)

She did great during the lumbar puncture today. I know she was unusually tired this morning, so I expected her to fall asleep once she got her sedation - but she stayed awake for the whole thing - just no show tunes to entertain the crowd this time around.

I'm sure poor Dr. Jason thinks I am a nutjob as during her exam I told him that I was a little nervous that after this one, we are moving to LP's every 18 weeks (instead of every 9 weeks) and after today, she has only 2 more to go.

As much as I despise these things, they are a bit of a security blanket for me. If she were ever to relapse (HATE that word!!!), it's a pretty good chance that it would happen in the CSF (cerebral-spinal fluid), and the LP's are our best line of defense against that.

I guess at some point you just have to trust that the chemo is doing what it's supposed to... and I need to quit looking for things to worry about!! ;)

This week is Pedal Partner week at the Jimmy Fund. The JFC photographer was there taking pictures of all the kids. Hunter was busy painting and couldn't be bothered to say CHEESE... I had to dance around and put play food on my head to get her attention, but hey, whatever works...

We had our visit with Hunter's Make-A-Wish coordinators tonight. They were so wonderful, brought the girls a bunch of Princess and dress-up gifts, and the Disney Greatest Hits CD's.

We aren't planning to head down to Disney until the fall, but *I* was starting to get excited about the trip, just talking to them!!

Have I mentioned lately how lucky we are?

- Katie


Thursday, March 3, 2005 6:54 PM CST

We've been blessed with another week of good health and good counts. So I thought I'd just post a couple of fun things... like Hunter's Bad Hair Day above. Who knew that one day I would consider a Bad Hair Day a gift from above? (Hey, it's a lot better than a No Hair Day!!)

I took a picture of Taylor just out of her bath this morning - and as soon as I uploaded it to my computer I thought it looked familiar... flipped through a few photo albums to find I wasn't wrong!

Anyone care to venture a guess as to which one is Hunter and which one is Taylor? (No wonder I keep calling poor Taylor by the wrong name!)



And because I am still a new mom who's just totally in love with this new perfect little addition to our family, here's a video of The Cuteness herself. She thinks it's funny when we stick our tongues out at her, and now she's doing it back. (I think you need Quicktime to view it...)



My future Patriots cheerleader? (Are princesses allowed to have a side job?)


On the not-so-fun-side, Hunter has her 3rd to last lumbar puncture on Monday. She usually handles them well although the sight of that giant needle going into my baby's back always brings me to tears. Please say a prayer that the results come back totally normal...

Lastly, please keep our friends Matthew and Victor in your prayers. Matthew has already fought cancer once and relapsed in December after 3 years of chemo and a year off treatment. He's facing another 3 years of chemo. Victor endured a year and a half of chemo before relapsing. His family is now in search of a bone marrow or cord blood match so that Victor can head to transplant. And please, if you aren't on the Bone Marrow Registry, go and register... you could save someone's life!!!

Lots of love...

- Katie

Friday, February 18, 2005 2:19 PM EST

Just a quick update to say that all is well with us... We had a clinic visit on Monday and I was amazed to find that my little sweet pea grew 1.5 centimeters in three weeks!!

She also has amazed the heck out of me lately as she's figured out how to use a mouse and now amuses herself for hours at a time playing Dora, Maisy and Sesame Street games on the computer! Not bad for 2 1/2 years old.

We were contacted by Make-A-Wish and our Wish coordinator is coming to meet with us in March... we want to take the girls to Disney in the fall to meet the Princesses and stay at Give Kids The World. I'm so excited they will have the opportunity (Hayley deserves this too... none of this has been easy for her either) but it is strange to think about the fact that we have a child that qualifies for a Wish.

It's a steroid week for us but so far it's been more of The Big Eat... and Eat... and Eat... than The Big Eat And Scream. That's just fine by me although my stash of popcorn and Easy Mac is starting to run low. (Seriously, she's going through 2 bags of microwave popcorn a day!!) Maybe she just hasn't been screaming because her mouth is full.

That's about it... I'm sitting here in my family room surrounded by three beautiful girls and thinking I am the luckiest mom in the entire world.

Somewhere in my youth or childhood
I must have done something good.

Now I'm off to change a poopy diaper ()... and judging by the smell, somewhere in my youth or childhood, I must have done something pretty darn horrible too.

Yep, I am one lucky mom.

- Katie


Saturday, February 5, 2005 4:19 PM CST

Has it really been 2 weeks (give or take) since my last update? Gee, would it shock you to know I'm about four years behind on my scrapbooking too?

Things are going well here... uneventful, which I guess explains my lack of urgency to get to the computer and babble away here. But as we all know, uneventful is GOOD!!

Thank heavens this is the year we decided to invest in a snowblower... last week we got pounded with about 40" of snow in a 4 day span. Driving into Boston 2 days after the first 30" fell was a real treat... I don't think they even plowed the Longwood area where the hospitals are. I was literally bulldozing my way through the snow on the back roads by Dana-Farber! But we are all dug out now and it actually got into the 40's today, which feels positively TROPICAL right now!!

The girls have all been healthy and (mostly) happy. Hunter finally has just enough hair for a barrette, and while the little clips are purely decorative and not the least bit functional, she is very proud to wear them and insists on having one put in her hair every morning lately.

Actually her hair has been looking a little shaggy these days. She could probably do with a trim to shape it a bit, but for the life of me I cannot bring myself to bring a pair of scissors anywhere near that little mop!

Taylor continues to be an incredibly happy baby... as long as her little belly is full, she is full of smiles. At five weeks old, she's been grinning at us for 4 weeks now. It's definitely *not* gas, she is just a smiley kid. She's at that cute stage where she stares at us meaningfully, concentrates hard, then smiles, and emits a very earnest, "ah-goo". At 9 pounds 13 ounces she's also incredibly chunky (well at least for a baby in this family!)

My sunny little sunshine:


And the very silly big sisters/stroller hijackers... caught red-handed!:


One last note, our friend Dennis called this morning to ask if he and his wife Lori could ride the Pan-Mass Challenge this year in Hunter's honor. They'll be riding from Wellesley to Provincetown (162 miles in 2 days). No small feat considering they have to fit their training in while working and caring for two little ones of their own.

Dennis and Lori... thank you.

- Katie

Wednesday, January 19, 2005 5:08 PM CST

Wow, thanks everyone for checking in despite the lack of updates over the last 18 days!!

We are all doing well... Taylor has fit right in and it's hard to believe that three weeks ago, we'd never even met! Hunter still tends to call her "the baby sister" rather than "Taylor"... I just hope that changes some time before Taylor is old enough to realize it!! :)

The Baby Sister still seems to think we all work the night shift around here, she tends to punch in around midnight and is busy doing her Awake Baby thing until sunrise. Other than that, she's a pretty laid-back kid... as long as her belly is full, she's content to hang out and look around. She's also a smiler... she's been smiling since she was about a week old, which still amazes me. Yeah, some will say it's gas... but I don't buy it.

Hunter has been feeling good and her counts have all been in the perfect range lately. It's now been 13 months since she was diagnosed, which means only 12 months of chemo left - we are more than halfway there! Daddy took her to clinic on 1/3 for her lumbar puncture. Dr. Jason called later to tell us that her spinal fluid was crystal clear!!

We were sad to hear that Hunter's nurse, Jen, is leaving clinic to take a new position closer to home. We wish her well but we will miss her lots!!!

Hayley is still out of school for Christmas break, she goes back next week - I don't know who is happier about that, her or me!! It's been so darn cold here we really haven't been able to get out much so we're all a little stir crazy. She did get a 2 day sleepover with Grandma and arrived back home with bags full of new outfits for everyone... have I mentioned how good Grandma is at spoiling the girls?! ;)

Me, I'm just happy that I've been able to get back out running... especially since my Christmas gift from Mike was a cute little pink iPod!

A few new photos of The Baby Sister (no I haven't managed to get the girls to sit still long enough to get another one of them all together!!)

My late-night web surfing buddy (barely bigger than the laptop!):


A little fuzzy, but I love this smile!!


Grandmom and Grandpop sent this outfit - too cute!!


Cutie patootie...


And lastly... wearing a pink wish bracelet from Julianna Banana!!!


- Katie

Saturday, January 1, 2005 2:42 PM CST

Happy New Year everyone!! Last year Hunter and I rang in 2004 together while she was inpatient at Children's Hospital.

This year I was in the hospital for the holiday again, but for a much nicer reason... baby Taylor Nicole was born at 7:50 AM on December 31. She arrived on her own schedule, 3 days late, weighing in at 8 pounds 7 ounces, and 21" long. She is the image of both Hayley and Hunter when they were born, though she sort of split the difference with her hair... with a lot less than Hayley but a lot more than Hunter had!!

We have banked Taylor's cord blood in case Hunter ever needs it (we pray she won't, but it's a blessing to know it's there...) and God gave us a little bonus miracle by providing Taylor with an extra-large cord that allowed our ob/gyn to collect an amazing amount of blood!!

Taylor and I opted to be discharged in 24 hours and we came home this morning. The girls are slowly adjusting to their baby sister. Hayley is extremely interested and wants to be involved with EVERYTHING... Hunter so far seems to like Taylor but is less than impressed at her entertainment value at this point. :)

Thank you for all the guestbook entries... we wish every one of you peace, joy, and HEALTH in the New Year.

Lots of love...

- Katie

Sunday, December 19, 2004 8:43 PM CST

One year ago tonight...

I was off to the ER with Hunter... after nearly a month of mystery fevers, a misdiagnosed ear infection, and finally on 12/19/2003, a rash (that I later found out was petichiae, caused by low platelets from the leukemia).

I've never been so scared in my life as I was when I saw the faces of the docs and nurses at the local hospital... and then they told me that Children's Hospital in Boston was sending their big ambulance down to pick us up and take us there immediately.

We got Hunter's diagnosis at about 6AM on 12/20/2003. Sometimes it seems like yesterday, sometimes I can't remember a life before cancer.

One thing I do know is that I am one of the luckiest moms in the whole world today. While I know there are no guarantees, I also know that I have my baby here with me, she is happy and healthy... she has a smile that lights up a room... she's silly and smart and incredibly special... everyone that meets her falls in love... I am SO blessed!!

She has been special since the day she was born... 10 years to the day after my dad died. I felt him there with us in the room when she was born, and I know that he has been watching over her.

I am so proud of my girl... kicking cancer's BUTT for a whole year now!!

(This also makes 12 months of chemo down, 13 months to go... we're nearly halfway home!!!)

- Katie

Thursday, December 9, 2004 9:05 PM CST

OK a really quick update for real this time...

Hunter: Doing great... woke up with her first case of bedhead in nearly a year yesterday... and I was THRILLED, because she's finally got enough hair to actually have a bad hair day!!!

Her counts were all really good again this week, I continue to be amazed at what a difference there's been since she finished her 30 weeks of PEG shots.

Me: Still here, getting Gi-normous!! Baby seems perfectly comfy where she is so I guess I just sit around for a few weeks and watch my belly grow. :)

Thanks for all the name suggestions, you guys came up with some good ones!!

Please keep sweet baby Hayley and Derek in your prayers, they are both in hospice now.

- Katie

Thursday, December 2, 2004 5:50 PM CST

Sorry for the delay updating...not much to tell this week, which is always a good thing!!

Our Thanksgiving was really nice, thank heavens the buffet included Macaroni & Cheese... have you ever heard of someone eating nothing but Mac & Cheese for Thanksgiving dinner?! Jeez, it's bordering on un-American!! And chocolate cake for dessert (note evidence of same all over face below...) Whatever happened to pumpkin pie?

Mike, Hunter and Pony (the original)


Thanksgiving Day was unseasonably warm (like 60 degrees), especially for New Hampshire... we actually took a post-chowdown walk down to Lake Winnepesaukee... without coats, hats, or mittens!

Waiting for Mom and Dad to get off their lazy overfed butts and take us for a walk!


Daddy's Girls


Hunter and her leaf collection, Mommy very large and pregnant... already changed into jeans and running shoes, (running shoes... ha! I'm such a fraud!!) and Hayley looking generally cute as usual



I had wondered if Thanksgiving would be a little tough to handle this year since it marks the first anniversary of Hunter's initial leukemia symptoms. But in fact, when the thought of last year did cross my mind, I was just stunned by how healthy and happy she looks, and how incredibly blessed we are to have her in our lives.

Friday morning we put up our Christmas tree and with that, came the revelation that we may in fact have three kids in the house come December 25. And still, we have no name for this child! (Suggestions gratefully accepted, I think the only thing we are sure of is that we do not want another "H" name. I get their names mixed up too often as it is, my feeble brain can't handle another "H" added to the mix.)

Finally, since it seems our proverbial cup runneth over with blessings these days, I'm asking you to include a few other families in your prayers who aren't as lucky as we are.

Hayley

Derek

Taylor

In addition to prayers, Taylor desperately needs a bone marrow donor. If you aren't already on the registry, it's just a simple blood test... you could save a life!! In the US: The National Marrow Donor Program. In Canada: Canadian Blood Services

Love...

- Katie

Tuesday, November 23, 2004 10:41 AM CST

I guess this is the time of year that we all sit back and reflect on how much we have to be thankful for. This year I find I'm running out of fingers and toes on which to count my blessings. I suppose that sounds ironic considering the reason we even have this site in the first place is that my baby has cancer. But there’s a poem that does a pretty good job of summing up what cancer cannot do.

“Cancer is so limited… it cannot cripple Love. It cannot shatter Hope. It cannot corrode Faith. It cannot destroy Peace. It cannot kill Friendship. It cannot suppress Memories. It cannot silence Courage. It cannot invade the Soul. It cannot steal eternal Life. It cannot conquer the Spirit.”

And in fact, cancer actually did a pretty darn good job at whacking us hard over the head and opening our eyes to all the good things around us. I wish to the bottom of my soul that God had picked a different method for delivering this epiphany, but we all know He does things His own way.

Last Thanksgiving morning was the first time Hunter's leukemia showed its ugly face. She woke up that day with a fever and her eyes were nearly puffed shut. In our infinite wisdom, we thought she had picked up a little bug, and with some Ibuprofen and Benadryl, she recovered enough to enjoy dinner with the family. The next day, we raced home from New Hampshire to get her into the pediatrician, who diagnosed her with an ear infection. That began nearly a month of puzzling low grade fevers, increasing exhaustion, and leg pains, and eventually the petichiae that got her properly diagnosed at Children’s Hospital on December 20, 2003.

This year, after 11 months of chemotherapy, we have our little Troublemaker back. To say we’re thankful… well that just doesn’t even begin to cover it. As I watch her running and playing in her Dora costume and bossing her big sister around, it seems nearly impossible to believe that there could still be leukemia lurking somewhere in her perfect little body. We are grateful for the wonderful oncologists at Dana-Farber, especially Hunter’s beloved Dr. Jason, who are doing everything in their power to chase down every last leukemia cell and make sure that Hunter lives a long and healthy life. I am thankful that she has handled her chemo well overall and I pray that continues.

Our blessings this year come in all shapes and sizes… I am grateful for the little girl who will be arriving sometime next month, even as she jams her little behind up under my ribs. I think the manufacturers of Tums are grateful for this baby as well, as I have probably kept them in business over the last 7 months.

I am thankful for my beautiful Hayley… and her obsession with all things Princess. Frankly I think she is planning to grow up, marry a prince, and move to a nice little castle in the suburbs someday. I’m not about to tell her otherwise.

For Mike… I cannot begin to imagine my life without him. How lucky I am that he just happened to be visiting our friend Chem that day in February 11 years ago. Who knew I’d go to a party and meet my future best friend and love of my life that night?

For my mom… who has been there at the drop of a hat for us, especially over the last year. She’s an overachiever at the part of the Grandma job description that reads, “spoil grandchildren rotten.” Lucky kids.

For my mother and father-in law… who, from 1500 miles away, have always found a way to let my girls know how much they are loved.

For the family and friends that have been there for us this year… and for the new friends we’ve met online through ALL-Kids, CaringBridge and Cancer Warriors. If you are reading this page, know that you are included in this category. (And if you sign the guestbook, we’ll love you even more…)

For the amazing group of women in my August 2000 playgroup… who have offered unwavering support in so many ways.

What else… good counts, blood and platelet donors (thank you Uncle Chris), SpongeBob macaroni & cheese, my laptop, our family and friends, TiVo, low-rise maternity jeans, portable DVD players, Tums, my running shoes waiting patiently in the closet, jogging strollers, the Pan-Mass Challenge, finishing PEG shots, the World Champion Red Sox and Patriots, pre-lit Christmas trees, play food and tea sets, clear spinal fluid, digital cameras, FlyLady (I’m trying), finally finding 2 extra “Ponies” online so we now have spares, reality TV, Dora the Explorer DVD’s, living so close to Dana-Farber and Children’s Hospital, being able to shop online, our family and friends (have I mentioned them?), the Lance Armstrong Foundation and those little yellow bracelets that are everywhere now, Gatorade, getting my braces off, complete strangers that have tirelessly raised money to find a cure for cancer, the cute little iPod I’m getting for Christmas (right Mike?), ‘only’ 14 more months of chemo to go, and for those little boo-boos that can still be healed with a kiss…

And since it’s a steroid week, I’d certainly be remiss not to mention that I am thankful for Thanksgiving dinner at the Wolfeboro Inn… I think Hunter might do some serious damage to that buffet table. Maybe I should call ahead and warn them.

That’s just the tip of the iceberg. I have run out of fingers for counting, and come to think of it, I haven’t actually been able to SEE my toes for a couple of months now (thanks to that little blessing who is currently attempting to kick her way out of the side of my belly).

Happy Thanksgiving Everyone.

- Katie

Wednesday, November 17, 2004 9:20 PM CST

It's been another good week for us... other than a bit of a runny nose for Hunter.

Actually her runny nose provided some entertainment for me the other day... at bedtime I was doling out her meds and gave her 1/2 tablet of Benadryl Cold to help with the runny nose and itchy eyes. She gave me a funny look when I handed it to her - she knows her meds and she knew this was NOT one of them!

I told her, "that's for your nose," and turned around to get the rest of her usual meds off the counter. Hear something fall on the floor and see that she's dropped the tablet. Give her another, turn around, hear it fall again. This happened three times before I finally decided I'd better watch and see what's going on... after all, this kid knows how to take her meds!

I handed her another tablet and watch... as she attempts to shove it UP HER NOSE! She saw me flinch and gasp and, with a look of concern, she removed the pill and looked at me quizzically... "For my nose, right mommy?"

Well that *IS* what I said after all...

Since I'm on the subject of meds... I have to say that Hunter is darn impressive with her medical vocabulary these days. While it goes without saying that these are words NO child should ever have to know, the fact that she does, well, in my unbiased opinion, I think it's pretty cool.

The ones that crack me up the most is her nighttime routine meds... every night she gets Mylanta (to protect her tummy from the steroids) and Atovaquone (antibiotic to prevent her from developing pneumocystic pneumonia). She likes to call them "My-Lanta" and "My-Tovaquone"... :)

And now that I've bragged on Hunter ad nauseum, I better throw this in... Hayley is no slouch herself... my favorite Hayley-ism of late... I was snuggling with her and said to her, "What would I ever do without you?" She looked at me hard with those beautiful blue eyes of hers and said, very seriously, "You would LOOK for me!"

Mommy brag... finis.

Oh, by the way, I've added a drop down list above... it includes links to anyone that's ever signed Hunter's Guestbook and left us a link... please stop by and visit some of these kids... makes me sad that there are so many, but they are all wonderful, amazing children.

- Katie

Friday, November 19, 2004 6:13 PM CST

Test entry by CaringBridge Support

Wednesday, November 17, 2004 9:20 PM CST

It's been another good week for us... other than a bit of a runny nose for Hunter.

Actually her runny nose provided some entertainment for me the other day... at bedtime I was doling out her meds and gave her 1/2 tablet of Benadryl Cold to help with the runny nose and itchy eyes. She gave me a funny look when I handed it to her - she knows her meds and she knew this was NOT one of them!

I told her, "that's for your nose," and turned around to get the rest of her usual meds off the counter. Hear something fall on the floor and see that she's dropped the tablet. Give her another, turn around, hear it fall again. This happened three times before I finally decided I'd better watch and see what's going on... after all, this kid knows how to take her meds!

I handed her another tablet and watch... as she attempts to shove it UP HER NOSE! She saw me flinch and gasp and, with a look of concern, she removed the pill and looked at me quizzically... "For my nose, right mommy?"

Well that *IS* what I said after all...

Since I'm on the subject of meds... I have to say that Hunter is darn impressive with her medical vocabulary these days. While it goes without saying that these are words NO child should ever have to know, the fact that she does, well, in my unbiased opinion, I think it's pretty cool.

The ones that crack me up the most is her nighttime routine meds... every night she gets Mylanta (to protect her tummy from the steroids) and Atovaquone (antibiotic to prevent her from developing pneumocystic pneumonia). She likes to call them "My-Lanta" and "My-Tovaquone"... :)

And now that I've bragged on Hunter ad nauseum, I better throw this in... Hayley is no slouch herself... my favorite Hayley-ism of late... I was snuggling with her and said to her, "What would I ever do without you?" She looked at me hard with those beautiful blue eyes of hers and said, very seriously, "You would LOOK for me!"

Mommy brag... finis.

Oh, by the way, I've added a drop down list above... it includes links to anyone that's ever signed Hunter's Guestbook and left us a link... please stop by and visit some of these kids... makes me sad that there are so many, but they are all wonderful, amazing children.

- Katie

Wednesday, November 17, 2004 7:54 PM CST

It's been another good week for us... other than a bit of a runny nose for Hunter.

Actually her runny nose provided some entertainment for me the other day... at bedtime I was doling out her meds and gave her 1/2 tablet of Benadryl Cold to help with the runny nose and itchy eyes. She gave me a funny look when I handed it to her - she knows her meds and she knew this was NOT one of them!

I told her, "that's for your nose," and turned around to get the rest of her usual meds off the counter. Hear something fall on the floor and see that she's dropped the tablet. Give her another, turn around, hear it fall again. This happened three times before I finally decided I'd better watch and see what's going on... after all, this kid knows how to take her meds!

I handed her another tablet and watch... as she attempts to shove it UP HER NOSE! She saw me flinch and gasp and, with a look of concern, she removed the pill and looked at me quizzically... "For my nose, right mommy?"

Well that *IS* what I said after all...

Since I'm on the subject of meds... I have to say that Hunter is darn impressive with her medical vocabulary these days. While it goes without saying that these are words NO child should ever have to know, the fact that she does, well, in my unbiased opinion, I think it's pretty cool.

The ones that crack me up the most is her nighttime routine meds... every night she gets Mylanta (to protect her tummy from the steroids) and Atovaquone (antibiotic to prevent her from developing pneumocystic pneumonia). She likes to call them "My-Lanta" and "My-Tovaquone"... :)

And now that I've bragged on Hunter ad nauseum, I better throw this in... Hayley is no slouch herself... my favorite Hayley-ism of late... I was snuggling with her and said to her, "What would I ever do without you?" She looked at me hard with those beautiful blue eyes of hers and said, very seriously, "You would LOOK for me!"

Mommy brag... finis.

Oh, by the way, I've added a drop down list above... it includes links to anyone that's ever signed Hunter's Guestbook and left us a link... please stop by and visit some of these kids... makes me sad that there are so many, but they are all wonderful, amazing children.

- Katie

Tuesday, November 9, 2004 8:20PM

Another quick update... Hunter's counts yesterday were SUPER.

In fact, the rest of our family has been fighting off a cold for the last 2 weeks... The Chemo Kid got over her cold in TWO DAYS!! :)

Have I mentioned she is AMAZING?

- Katie

Thursday, November 4, 2004 2:44 PM

Quick update: Hunter's spinal fluid is CLEAR!! No sign of any white cells or blasts... :)

Tuesday, November 2, 2004 10:29 AM

Hunter SAILED through her lumbar puncture yesterday, I was so proud of her!!

Figures... I've been stressing out about this LP, oh, since the last one, 9 weeks ago... and as it turns out, she literally sang songs the entire time Dr. Jason was doing the procedure. (Yes, she had a little help from a few goofy-drugs along the way, but still, she was very cooperative!!)

Now we say a prayer and keep our fingers and toes crossed that her spinal fluid comes back clear. And I guess now I can get started worrying about the NEXT LP... in another 9 weeks.

Hayley and Hunter (I mean, of course, Princess Annaliese and Dora The Explorer) had a lot of fun trick-or-treating on Sunday night... surprisingly though, neither of them seemed to remember their candy stashes yesterday. Not one request for chocolate... if I hadn't given birth to them myself I'd swear they are NOT related to me!! (Me... who did a stellar job of handing out everything BUT my favorite - Almond Joys... guess who's going to make sure THOSE don't go to waste...) ;)

Hayley
"What you don't know is that I dress like this every day. Really."


Hunter
"I've got hair, I've got chocolate, who could ask for anything more?"


- Katie

Wednesday, October 27, 2004 11:44 AM CDT

The good news this week: Hunter's counts were again excellent... better in fact than MINE!! I had my CBC done at the ob/gyn and Hunter's hematocrit and hemoglobin levels were much higher than my own. So I am on an iron supplement, watching the Chemo Kid literally dance circles around me!

The most difficult part of the week: Our friend Coley passed away on Friday. She had such an enormous spirit, but her little body just couldn't keep up.

Such a sad reminder that while there have been great strides made in the treatment of pediatric cancer, we still have a long way to go. With that in mind, I have signed Hunter up to be an Honored Hero for the Leukemia and Lymphoma Society's Team In Training next year.

Our thoughts and prayers are with Todd, Kristin, Marissa and Travis, and all of Coley's family.

Todd delivered the most amazing tribute to Nicole yesterday at the funeral service. The entire church was laughing one second and wiping a tear away the next. If you want to read it (and you should, I promise you will be glad you did) he has posted it on Coley's CaringBridge site.

- Katie

Wednesday, October 20, 2004 11:44 AM CDT

Another good week for Hunter... she gained another .4 kilos (.9 lbs) since LAST WEEK... so she's up nearly 3 pounds in the last 4 weeks... not bad considering thats 15f her body weight!

All her counts were good and we made it through 'Roid Week with our sanity intact, though with a severely depleted supply of Kraft Macaroni & Cheese... :)

Please continue to pray for Coley, she is still inpatient at Children's and having a very hard time right now. Also please say a prayer for our family friend Betsy, who passed away on Monday morning. We loved her dearly and we will miss her greatly.

- Katie

Monday, October 11, 2004 4:17 PM CDT

Note to self: hot dogs for breakfast will make you a Chunky Monkey!! Do not attempt this diet.

We had a clinic visit this morning and Hunter is up to 10.0 kilos (that's 22 pounds!!) Just three weeks ago she weighed in at a whopping 9.1 kilos, so she gained 2 pounds over the last 21 days on her hot-dogs-in-the-AM diet!

On the drive in to Boston, it occurred to me that 1 year ago today, I was running 26.2 miles in the Hartford marathon. Today... I could barely get myself, my 2 year old, and the diaper bag backpack from the parking garage into clinic without stopping to take a rest... oh the joys of pregnancy!! ;)

Counts were on the low side this week, though still high enough to start a new cycle of chemo. The steroids (Big Eat and Scream) begin tonight - we're preparing for Hurricane Hunter to blow through over the next five days!

We saw our friend Coley at clinic today, she was looking cuter than ever. :) Please continue to keep her in your prayers.

October 14: Another request for prayers. My 'other mother-in-law' Betsy (my mother-in-law's best friend) is in the hospital. She suffered complications after surgery. Please pray for her to pull through and come home soon. Betsy, we love you!!

- Katie

Monday, October 4, 2004 10:20 PM CDT

Just a quick update this week... the sky is blue, the weather is perfect, and Hunter's counts are great!!

She has been eating like it's the first time she's tasted food... she goes 'shopping' in the fridge and orders up her meals... lunch today was 4 pieces of American cheese and some slices of chicken. As she was eating the chicken she kept telling me, "mmm... Mommy, this is de-wish-ous!"

(I was just happy she was eating... and eating something other than her new favorite - hot dogs. She's even been having them for BREAKFAST lately!! But then again, who am I to complain?!)

We go back to clinic next week and we'll see Dr. Jason for the first time in 6 weeks... (he was on vacation last time we were in 2 weeks ago). I know Hunter is going to be excited to see her buddy!

Thank you Grandmom and Grandpop for the Tony Stewart Home Depot NASCAR pillows... the girls had a ball scooting around on the hardwood floors tonight!

Hunter (that's a princess crown on upside down and backwards - she insisted on wearing it that way while she drove...)


Hayley


- Katie

Tuesday, September 28, 2004 12:18 AM CDT

It's been such a laid-back, uneventful week, I nearly forgot to update! The visiting nurse came out yesterday to draw Hunter's labs and we got the word later in the afternoon that Hunter's ANC was up over 2000! (Thank you, steroids!)

She had another really good week... just seeing her operate these days makes me realize how much that horrible PEG was getting to her. She is eating wonderfully now - had 2 hot dogs at one sitting a few days ago, and I nearly cried tears of joy!

She also has this amazing energy lately (and I thought she was vivacious BEFORE)... case in point: last Thursday I took the girls to the zoo after Hayley got out of school. We started with Hunter in the umbrella stroller and Hayley walking. That lasted until the first animal exhibit and then Hunter wanted to walk. About 10 minutes later, Hayley decided she was tired and wanted to ride in the stroller. As soon as she got in, Hunter 'volunteered' (i.e. DEMANDED) to push her!

So there we were walking around the zoo all afternoon - my perfectly healthy and able-bodied 4 year old in the stroller, with my cancer patient chemo-taking 2 year old happily pushing her along!!

As you can see from the new photo on the front page, WE HAVE HAIR!! (I know it looks dark in the photo, but it's really about a shade lighter than Hayley's - light blonde!) I'm actually daring to hope that by the time the baby arrives in December, Hunter will have more hair than the baby does!

- Katie

Wednesday, September 22, 2004 3:44 PM CDT

Hunter had a GREAT clinic visit this week... most importantly (and surprisingly) she did NOT need a transfusion... her hematocrit came back on its own to over 29. (Did I mention: ?)

All her other counts were perfect, and she is starting her new cycle of chemo ON TIME this week.

We've begun steroids, or as Julianna Banana's dad Terry calls it... "The Big Eat and Scream"!!

We've even got a little more hair... all of it blonde - much lighter than it was pre-chemo!

- Katie

(Sorry for the late update... I typed up a longer version of this on Monday night, hit 'enter' and *poof* it disappeared!)

Monday, September 13, 2004 4:13 PM CDT

Back on the neutropenia train this week... ugh. It's probably just the chemo from the lumbar puncture two weeks ago hitting her counts (at least last week she was on steroids which helps increase WBC and ANC.) Her ANC was down to 440 today.

Fortunately, her hematocrit stayed exactly the same this week as last week, so unless she starts looking symptomatic, she won't need a PRBC transfusion... yet. And her platelets are excellent at 623... one of the highest platelet counts she's ever had!

Next week we are back at the Jimmy Fund... hopefully her counts will be high enough to start a new cycle of chemo by then.

As usual, Hunter's low counts took me by surprise (you'd think I'd have come to expect it by now, wouldn't you?) because she looks good and has loads of energy! I feel like a broken record saying that every week but I always think it's important for people to know. :)

- Katie

Tuesday, September 7, 2004 6:13 PM CDT

We are officially into our new phase of treatment today (a day late due to Labor Day). The visiting nurse came out and accessed Hunter's port to draw labs. She dropped off the blood locally to get the labwork done, and the Jimmy Fund called us later this afternoon with the results. Pretty easy!!

Hunter's counts were fairly good... she's been on Prednisone which tends to raise the white blood cell counts and ANC, so her ANC was up to 1200 this week. Might be a little artificial thanks to the steroids, but we'll take it!! We haven't seen a (non-GCSF-induced) ANC that high in seven weeks now.

I was able to give her the Methotrexate this afternoon and deaccess her port.

If you know Hunter at all though, you know there is a BUT coming... the big BUT (!) this week was her hematocrit, which is down to 25.3. They usually transfuse red blood cells when the HCT drops below 25 at our clinic. So chances are good we'll be looking at another PRBC transfusion sometime over the next 2 weeks. For now, we just have to watch her to see if she starts tiring easily, which is to be expected with a low HCT.

Again, if you know Hunter... even with a low HCT she is a little ball of energy!!

We had a nice weekend, we celebrated the girls' great-grandmother's 90th birthday. We were very happy to see so many people that have been keeping our family in their thoughts and prayers, particularly Hunter's grandmother's cousin, Bob Breagy, who has been so thoughtful about leaving regular messages in her guestbook!

I do have to close on a sad note. We found out yesterday that our friend Coley has relapsed again just 4 weeks after her second bone marrow transplant. Our hearts, thoughts and prayers are with her and her family.

- Katie

Monday, August 30, 2004 4:59 PM CDT

Hunter finished her PEG shots today!!! 30 down, ZERO to go!!!!



She also finally got that elusive LP... she did great, I was so proud of her! She was NPO (couldn't eat or drink) beforehand and didn't get the LP until 2:30 this afternoon, so the morning was a little rough for her, but she happily wolfed down a few cups of Gatorade, some Chicken McNuggets, and Smartfood popcorn afterwards, so I guess all is forgiven. :)

As usual with her, there was a little monkey wrench thrown in... after 5 days of GCSF shots last week, we had her counts done on Friday and her ANC was up to a whopping 9320!! This morning, it was back down to 710.

Dr. Jason decided to go ahead with the LP despite her counts, since we KNOW her bone marrow looks good. She also got her Vincristine and will start her Prednisone (steroids) tonight, but she's off her 6-MP this cycle, since we know she's particularly sensitive to that med.

Now that she's finished up her PEG shots (did I mention: ??!!) she is officially DONE with her Intensification phase of treatment and has entered Continuation. From now until the end of her chemo in January 2006, she'll only have to go to clinic once every three weeks. During the two off weeks, we'll have a home health nurse visit to access her port and send her blood out for labs, and she'll get her usual chemo at home.

It's going to feel really strange not going to the Jimmy Fund every Monday!! I'm sure it sounds crazy, but I think the girls and I will all actually miss it in a way... :)

- Katie

Monday, August 23, 2004 5:33 PM CDT

Q: What are the five most wonderful words in the English language?

A: "Hunter's bone marrow looks beautiful!!!"



Hunter's ANC came back too low again to get her LP. Since the rest of her counts were pretty good, but her WBC remains low, her oncologist wanted to start her on a drug called GCSF (granulocyte colony stimulating factor), which is designed to give the white blood cells a little kick-start out of the marrow to get her counts moving in the right direction.

Before we could do that, however, we had to have a bone marrow aspiration, to make sure that her marrow is still clear, so that we wouldn't be kick-starting any leukemic cells with the GCSF as well.

She got the BMA today at clinic and she did GREAT... I was so proud of her!!! She had it under conscious sedation, so she was awake for the whole thing, but very loopy. She actually sang the ABC song as Dr. Jason was doing the procedure... :)

Then we got to sit and wait. I don't think I breathed for about 4 hours until Dr. Jason finally got word from pathology. "Hunter's bone marrow looks beautiful!!!" Honestly, the impact of that sentence is probably something only a leukemia kid's parent can fully appreciate, but suffice it to say, I felt like a 10 ton weight had been lifted off my back. Sky was blue, birds were singing, you get the idea...

Her marrow had no sign of any blasts, and a lot of good white cells that haven't yet made it into her bloodstream. It seems that she really is just very sensitive to the chemo, for some reason the oncs can't fully explain yet.

She'll get a few GCSF shots this week (she started today) and NEXT WEEK for sure we should be able to get her back on chemo and get that rotten LP out of the way.

Actually, compared to the BMA she had today the LP will probably seem like a piece of cake...

Hunter being Hunter, there was, of course, one little snag today. She developed a strange rash on her face, arms and legs this morning, between the time she woke up and the time we arrived at clinic. We had multiple nurses and Dr. Jason take a look at it, and they all thought it appeared to be contact-related. It appeared and disappeared during the day but never really got any worse than it was this morning. Probably just one of those 'things'... I'll feel better when it's gone though!!

We are headed back to Jimmy Fund in the morning to get her second GCSF shot. Fortunately these are subcutaneous, not intramuscular like her PEG's, so they aren't nearly as painful. With the numbing cream at the injection site she should have a much easier time with these.

Speaking of PEG... Shot #29 DONE!!!!!!! ONE MORE TO GO!!!! (Again with the blue sky and birds singing here...)

- Katie

Monday, August 16, 2004 4:47 PM CDT

Well this kid clearly does not want to get her LP. ANC was only 800 today (has to be 1000 to get the LP) so we are deferring the procedure YET AGAIN.

She is off all chemo (but did get her PEG shot as she gets that no matter what her counts are) and she's been taken off her Atovaquone (antibiotic) as well, as it can suppress counts. (Kids with ALL get a routine antibiotic to prevent them developing pneumocystis pneumonia due to their low immune systems.) Last time we took her off the Atovaquone due to counts, they went from 700 to 2350 in a week... so we're hoping and praying this will do the trick again.

The good news is that although her counts are low, they are headed in the right direction. Her platelets are up, which is a good sign.

If her counts do remain low again next week we'll meet with Dr. Silverman, the head of Hunter's study at Dana-Farber, to discuss a game plan. Dr. Jason thinks it's just that Hunter is extremely sensitive to chemotherapy, and it's taking a while for her marrow to recover. That's not necessarily a bad thing... it means the chemo is doing what it's supposed to do... but the waiting and not knowing is frustrating and frankly, a little scary.

As usual, she doesn't LOOK like a kid having chemo and counts issues... she's got plenty of energy - heck, I can barely keep up with her!! She's also up to a new high weight - 9.6 kilos (21.1 lbs). Let's hear it for Kraft SpongeBob Squarepants Macaroni & Cheese!! (Only the SpongeBob kind will do... I guess I should just be thankful we're off the mayonnaise thing at last!!)

We appreciate all your thoughts and prayers... especially this week.

- Katie

P.S. Forgot the countdown... only TWO PEG shots left!!!

Monday, August 9, 2004 2:34 PM CDT

The little stinker weaseled her way out of her lumbar puncture yet again this week!! While she's not neutropenic (hooray!) with an ANC of 700, they won't do the procedure unless her ANC is 1000 or over. So we have another week off chemo to hope and wait for her counts to recover.

That said, we did get her PEG shot as usual... only THREE more to go!!!

This weekend was pretty neat, we went to the Pedal Partner rest stop for the Pan-Mass Challenge. They had a whole tent set up for the Pedal Partners, with luau themed costumes, games, arts & crafts, food, etc. We got to meet our Pedal Partner, Susan and her husband Gareth, who was also riding the PMC.

They estimate that $17 million was raised for Dana-Farber and the Jimmy Fund Clinic by the PMC riders this year, bringing the PMC's 25 year total to nearly $120 million in funds raised. 25 years ago, kids did not survive ALL. The fact that most kids now survive this disease (along with many other pediatric cancers) is no doubt due in part to the research that has been funded by this ride.

With all that in mind, watching the 4,000 riders as they journeyed on their 192-mile trek was an overwhelming and humbling experience.

- Katie

Monday, August 2, 2004 4:24 PM CDT

Well this week we are again singing the "Low-Counts, Stuck-in-the-House, Can't-Go-Out, Fever-Watch, Neutropenia Blues..."

No lumbar puncture (LP) today, no chemo except for her PEG shot (only FOUR more to go!!) She has the week off to recover, and we'll try again for the LP next Monday.

(Figures, I even remembered to give her a no-polish pedicure this week... last LP she had pretty pink toes - but the nail polish made it hard to get an accurate pulse ox reading when they put the little clippy thing on her big toe!)

We did have a good week despite low counts... Mike, Hayley, Hunter and I went to the annual Jimmy Fund Summer Festival yesterday. The girls had a GREAT time!!

It was hot and steamy here and it rained on and off, but that didn't stop any of the kids from having fun. They had a record turnout despite the weather, with over 1,200 people there! (Normally 1,200 people in one area with my neutropenic kid would be enough to give me [more] gray hair, but the festival was on a big campus, outdoors, and I pretty much scrubbed the poor kid head to toe several times with soap and Purell!!)

(There are some new pics in the Photo Gallery from the festival.) The girls rode on a few kiddie rides (Hunter could not stop laughing on the Spinning Teacups!!) but I think the highlight was the reptile booth, where they got to meet some of the critters close up. I have to admit, I wasn't crazy about the fact that the 14 foot Burmese Python seemed VERY interested in Hunter... she must have looked like a delicious mouthful from a snake's eye view!!

We even saw one of our wonderful Child Life Specialists on the 11PM news last night. They did a story about the festival, and she was being interviewed on her opinion of the Nomar Garciaparra trade. (The Boston Red Sox are a big supporter of the Jimmy Fund.)

We have another big weekend ahead, health permitting... next Saturday and Sunday is the Pan-Mass Challenge, the biggest annual fundraiser for the Jimmy Fund. On Saturday, we'll get to meet Hunter's Pedal Partner, Susan, and cheer on all the other participants at a special water stop for the bike riders.

Fingers and toes crossed for better counts next week... we are tired of singing the Neutropenia Blues!! ;)

- Katie

P.S. Please say an extra prayer this week for our friend Coley. She is having her 2nd bone marrow transplant tomorrow.

Monday, July 26, 2004 2:11 PM CDT

We had a pretty good week... uneventful cancer-wise, which is always nice!

I'd been dreading the ride in to clinic today, with the Democratic National Convention in town and lots of roads closed, but as it turns out, everyone that works in Boston must have taken the week off, because we didn't hit any traffic at all this morning!

Well... we didn't hit any traffic... unfortunately the traffic kind of hit US.

At 8:50 AM I was sitting at a light and thinking how easy the commute was, when WHAM... we got rearended!! The good news is that the bumper on the van took the impact and there doesn't appear to be much damage. I was amazed the bumper wasn't crushed, but the kids weren't even phased by it!

The other driver's excuse was that he was on his way to a doctor's appointment and got distracted. I felt like telling him, "you just hit a pregnant woman, a 3 year old, and a 2 year old with cancer on the way to the clinic for chemotherapy... top that!"

Clinic was actually quiet today and we managed an early escape at 1:00. Hunter's counts came back OK - all her red counts are high thanks to the transfusion last week, but her ANC is only 390 which makes her neutropenic. She's scheduled for a lumbar puncture next Monday so hopefully her counts will bounce back this week and she'll be able to get her LP on time.

PEG shot #25 done... we are now officially in the home stretch since we can count the remaining shots on one hand... YEAH!!!

- Katie

Tuesday, July 20, 2004 6:14 PM CDT

A whole week of eating mayonnaise and "squeezy cheez" (Easy Cheez - that icky stuff that comes out of a can and bears no resemblence whatsoever to actual cheese) and Hunter is up to 9.1 kilos (20.02 pounds)!!

She also put away a lot of milk with chocolate-flavored whey protein snuck in, so at least the child was consuming SOMETHING with some nutritional value in addition to her steroid-induced junk food bingeing. :)

Her energy level was still pretty good, so I was mildly surprised to hear her hematocrit had dropped again this week and she would be needing a red blood cell transfusion. Despite the fact that it made for a 12 hour clinic day, we opted to get the transfusion yesterday, rather than driving back in to Boston later in the week.

The difference before and after the transfusion was pretty amazing. I thought the child was pretty active before... well now... it's like she's gone from Speedy Gonzalez to the Tasmanian Devil!!

I've been secretly wondering if they infused the blood with caffeine... but it's good to see her with so much energy, and with her cheeks all pink again!

The rest of her counts were all good... and PEG shot #24 is done... 6 more to go... it will be nice next week - we'll be able to count the shots left on the fingers of one hand!!

- Katie

Tuesday, July 13, 2004 9:40 AM CDT

The big news this week is that Hunter started eating again yesterday at clinic!! After a week of nothing but Pediasure and Gatorade, she ate... peanut butter, saltines, a little bit of a PB&J sandwich, some turkey and mayo...

That last bit... turkey and mayo... let me clarify. She ate some turkey. She ate some mayo. No, actually she sucked the mayonnaise right out of the little packet I'd used to put it on my sandwich!!

And I thought straight cream cheese was gross... but who am I to tell this kid that hasn't eaten in a week, that her food choice is, well... NASTY?!

Hunter also had a bit of a tummy bug over the last week (hence the not-eating), so seeing that her ANC had jumped to 1150 from 550 was a pleasant surprise. Even bigger surprise was that she GAINED weight this week on the Pediasure!! She went from 8.6 to 8.8 kilos (18.9 to 19.4 pounds).

A little less pleasant was the fact that her hematocrit is down to 25.7. At our clinic they usually transfuse if the hematocrit drops to 25.0.

We'll try and beef her up with protein this week (it's a steroid week so hopefully her appetite will cooperate!) to boost her red blood cells, but we have to be prepared for an extra long clinic visit next Monday if she does need to be transfused.

It takes 4 hours just for the red blood cells to go in... let alone all the waiting for the results of the initial blood draw, waiting for the packed red blood cells (PRBC's) to arrive, etc., etc.... The biggest trick will be getting her to stay still for the 4 hour infusion... something tells me I'd better go get some new Dora DVD's!

I had a nice long talk with the doctor who is running Hunter's study at Dana-Farber. I was asking about some new testing and he was very open and receptive. It's nice to know that Hunter's getting her treatment at a place that is willing to listen to parents and work with them rather than taking the "we know best, so just pipe down, you!" attitude!!

PEG shot #23 - DONE. 7 to go.

As I sit here writing this Hunter has finished her snack... some turkey and a glob of mayo on the side. She ate the mayo with a spoon...


- Katie

Wednesday, July 7, 2004 9:37 AM CDT

Well we now know that the mystery illness Hunter had last week, that landed her in the ER twice, was nothing more than a common old summer cold. How do we know this? Because I woke up with the same thing on Wednesday morning!

Of course, my cancer-fighting chemotherapy-taking immunosuppressed child managed to fight off said cold in about 36 hours. I, however, am STILL trying to get rid of the thing a week later!! :)

Clinic yesterday went fine... it was a little crazy because of the holiday, so all the kids who normally go on Mondays like us were there, along with all the Tuesday kids. Hunter and I managed to hide out in the Resource Room instead of the Playroom for most of the day - much quieter! (It was also the first time we've ever been to clinic that we haven't come home covered in paint, glitter, glue, Modge Podge, etc.)

Hayley stayed home with Daddy and Uncle Danny, who is visiting us from St. Louis. Uncle Danny spoiled Hayley rotten with a trip to Toys R Us while we were gone... :)

Hunter's counts were low - borderline neutropenic as her ANC was 550 this week. Quite a jump from her level of 3690 last week, but not unexpected as she's been on all her chemo AND fighting off that cold. Her white and red counts were also low, but her platelets are up, which is a good thing.

PEG shot #22 is in the books... 8 more to go!! We cannot finish these fast enough, it now takes me and another nurse to hold Hunter still so that Jen can give her the shot. She's only 19 pounds but MAN, is she strong!!

- Katie

Tuesday, June 29, 2004 10:55 PM CDT

Well, Hunter's clinic day went pretty well yesterday... except for the fact that it happened to be sandwiched in between two late-night ER runs to the hospital thanks to mystery fevers!!

Sunday morning Hunter woke up with a bit of a hoarse voice, but no other symptoms... until about 7:30 at night when she spiked a fever of 101.6 and I had to take her to the ER. Her counts came back with a high ANC (3740 - I think that's a record for her - thank you Prednisone!) and all the tests they ran for things like strep and bacterial infections were negative, so they gave her an antibiotic infusion and sent us home at about 3AM.

Monday morning her temp was down to 99.0 and then it was 98.6 at clinic. Her counts were still good, ANC of 3690, and she got her PEG (21 down, 9 to go - there is light at the end of the tunnel!!!)

But in true Hunter drama-queen fashion, her fever came back Monday night, and her oncologist wanted to see her in the ER again to repeat the antibiotic infusion. Mike took her in this time. She had no fever by the time they got to Children's, but they gave her the infusion anyway and sent them packing. Poor Mike got home at 1:30 AM and got about an hour and a half of sleep before getting up for work this morning!!

Throughout all of this, Hunter's been in great spirits and doesn't seem to be feeling under the weather at all. She's still a little hoarse and has a bit of a runny nose, but that's it. The little stinker actually seemed to enjoy all the attention she was getting at the ER!!

Sorry for the late update... between ER runs, clinic, working on the deck, and life in general, I just didn't get to the computer until tonight. Next week is the 4th of July holiday, so our clinic day is pushed back to Tuesday. Hope you all have a great weekend... we're hoping to watch the fireworks from our newly-remodeled deck this year!

- Katie

Monday, June 21, 2004 5:44 PM CDT

Another pretty good day at clinic. I was pleasantly surprised to hear that Hunter's ANC came back up to 1370 (from 800 last week)!! Her pattern lately has been that she needs a week off from chemo after most cycles so this is really good news!

PEG shot #20 today... 10 to go... :)

Hunter's TPMT results finally came back and they were negative. Meaning, she isn't deficient in the TPMT enzyme that's needed to metabolize 6-MP. However, since her counts have been fairly stable over the last cycle while on a 50 percent dose of 6-MP, her oncologist suspects that she is sensitive to that drug for some other reason. They are going to keep her on the 50 percent dose and see how she handles it.

Hunter's nurse and the child life specialists gave her a little birthday party (she'll be 2 on Wednesday!!) They had a cake and sang to her and she got a few gifts. Very unexpected and very nice of them... :) Is it any surprise that neither of the girls wanted to go home when we got done today?!

We're starting a new cycle tonight... steroids begin at 8:00. If you're in the area and you hear irrational screaming and incessant demands for Doritos... well that will be us. Come on by and say hello... even if it's 3AM... she's on steroids, we'll be awake!! (What do you mean, "no thanks"???) ;)

- Katie

Monday, June 14, 2004 4:09 PM CDT

Chunky monkey not so chunky today. Hunter was back down to 8.4 kilos, which means she lost over 2 pounds this week!! Probably not too surprising considering she ate like a bird all week for some reason.

All her other counts were pretty good... ANC is down, but her liver enzymes were too... we'll take that trade any day!

She got her 19th PEG shot (11 to go!) and she has one more dose of 6-MP tonight, then methotrexate tomorrow, and then she's chemo-free for the rest of the week. (Yay...)

That's it... she feels good, she looks good, her counts are good... we'll take that news any day, even if it's boring!!

On another note, please say a prayer for our friend Coley. She is a little girl that was diagnosed with AML (Acute Myelogenous Leukemia) at the same time Hunter was diagnosed with ALL. We were inpatient at the hospital at the same time and so we got to know her and her family. Coley had a bone marrow transplant back in February and was doing really well - until she relapsed last week.

Please keep Coley and her family in your thoughts and prayers. Her website is here: Coley's Fight if you'd like to send a note of encouragement.

- Katie

Monday, June 7, 2004 3:58 PM CDT

Well first off... the little chunky monkey is up to 9.5 kilos (20.9 lbs)... that's .6 kilos (1.3 lbs) over last week's weight!! Hunter hasn't been over 20 lbs yet in her LIFE so this is definitely a milestone! She was also a few millimeters taller this week... go figure... :)

Most of her counts were good... ANC way WAY up at 2510, so she'll get all her chemo again this week. PEG shot #18 is out of the way, with 12 to go. We're still waiting on the results of the TPMT test they are doing to see if she may be deficient in the enzyme that clears the 6-MP from her system.

Hunter's liver enzymes continued to crawl upward this week. Her ALT (alanine aminotransferase - you KNOW you wanted to know that...) level is currently at 202. Normal is 3-30. If her ALT level hits 320 they will give her a break from the methotrexate she gets every Tuesday to allow her liver to recover.

Aside from all the cold hard digits... you should know that she seems to be feeling great! She has color in her face again this week and the steroids have made her cheeks so chubby - she looks adorable if I do say so myself. ;) She has lots of energy... sometimes TOO much - especially when it means she's WIDE AWAKE at 3 AM and asking to watch Clifford on TV!

Thank you as always for your continued support and prayers. Knowing that there are people rooting for her in several corners of this world really helps make this whole journey easier on us.

- Katie

P.S. Happy 7th Anniversary Mike! (heh heh... now we'll see if he ever actually READS these updates...) ;)

P.P.S. Now we'll see if anyone else actually reads these updates... see below... :)

Tuesday, June 1, 2004 3:53 PM CDT

Hunter's counts rebounded this week... ANC is up to 1090, which was high enough for her to get her lumbar puncture and start chemo again!!

She did GREAT with the LP and the whole thing was much less traumatic this time... from the time the needle went in to the time chemo was done was probably about 3 minutes... thank you Dr. Jason! The toughest part again for Hunter was being NPO (no food or drink) until noon.

Once the LP was over, she drank (chugged, actually) a big sippy cup of Gatorade, 2 little cartons of milk, ate a bag of chips, two little tubs of peanut butter (straight from the tub with a spoon of course), and a big piece of chocolate cake! (And she doesn't even start her steroids until tonight!) :)

They did an extra blood draw this week to test and see if Hunter has a TPMT deficiency. TPMT (thiopurine methyltransferase, if you really want to know) is the enzyme that processes mercaptopurine (6-MP), one of Hunter's chemo meds. If she has a TPMT deficiency, it means her body isn't able to clear the 6-MP from her system efficiently, which would explain the roller coaster ride with her counts.

Hopefully we'll have the results of the TPMT test next week. If she does have a deficiency, they will decrease her 6-MP dosage and her counts should begin to level out.

PEG shot #17 down... 13 to go over the next 13 weeks...
LP #7 down... 7 to go over the next 20 months...
We are now 23 weeks into treatment, with 85 to go.
That's 21f the way there.

Big deal, I know... ;) but even if it's only baby steps... it's progress!!

Oh, I nearly forgot... we had to go over to Children's to pick up her prescriptions. I decided to take her up to 7 West for a visit as we haven't been there since last inpatient stay in January. She looked disoriented when we got off the elevator, and then made a beeline for the Playroom, shouting, "toys, toys!!" :D

- Katie

Tuesday, May 25, 2004 10:37 AM CDT

Hunter did not get her lumbar puncture as scheduled yesterday. After 3 weeks of stellar counts, she crashed. Her ANC this week is only 240, which makes her neutropenic. So no chemo this week again, no LP, and we are stuck in the house, dousing ourselves in Purell.

She seems just fine, which made her low counts a rather unpleasant surprise. Before we got her counts back Dr. Jason had actually mentioned increasing her chemo since her counts had been so high lately... HA. I guess Hunter didn't like hearing that, she apparently had other plans!

Her LP is rescheduled for next Tuesday (a day late due to the holiday) so we'll hope and pray for her counts to come back this week so she can get back to chemo as scheduled.

I realized this weekend that this will be her 7th LP out of 14 in her treatment protocol. (They are heavily loaded up front with 11 of them in the first year). It will be nice to know they are halfway over when she finally does get this one done!

She did get her 16th PEG shot. 14 to go... feels nice to be over the 'hump' with those too.

For those of you that listen to Top 40 type of music on the radio... one of Hunter's favorite songs is "Hey Ya" by Outkast. Don't ask me why, both the girls love it. Yesterday, her nurse Jenn let her hold the little vials and shake them during her blood draws. She handed Hunter a vial and told her to shake it. Hunter broke out in song... "Hey Ya! Shake it, shake it, shake it like a Polaroid picture!" :) How can you not laugh when your 23 month old is singing Outkast?!

- Katie

Monday, May 17, 2004 3:51 PM CDT

We had a brief little scare at clinic today that turned out to be nothing... but it's amazing the way one funny count can make me feel like I got punched in the gut these days.

Hunter's glucose level came back at 286 this morning. Normal is 60-115, and her highest level previously was 114. So 286 is rather disturbing, especially since she hadn't eaten anything sugary prior to her blood draw.

All her other numbers were good (ANC 2640!!) so they did another draw and sent it for a re-test. When it came back the glucose level was 94. MUCH better! They don't know exactly why the first reading was so far out there.

Hunter had her 15th PEG shot today, so she is officially halfway through the Intensification phase of treatment!!! Only 15 more of those miserable shots to go.

She has a lumbar puncture next week... it's hard to believe it's been 9 weeks since her last one already. Those things are miserable but fortunately Dr. Jason will be here to do it this time around. We've told him he's not allowed to take any more vacations during LP weeks!!

- Katie

Monday, May 10, 2004 3:05 PM CDT

A few things I never imagined I would be incredibly grateful for:

High ANC's and good counts
Rosy cheeks
Kissing a cool little forehead
Peach fuzz hair on a nearly-2 year old
Cream cheese and peanut butter diets

:)

It was another good week. Hunter actually woke up this morning with rosy cheeks for the first time since before she got sick. Of course being the paranoid mom of a cancer kid, my first thought was FEVER. But she passed the forehead kiss-test and the thermometer test both here and at clinic, with flying colors!

She gained .3 of a kilo this week, bringing her to a new high weight, 8.9 kilos (19.6 pounds). Do I dare think she may even hit that elusive 20 pound mark before she's two years old? (Even with all the chemo that's supposedly going to be suppressing her growth, she's not too far behind Hayley's stats at the same age.)

She finally added some variety to the cream cheese diet last week, throwing in peanut butter, pudding, eggs, and drinking lots of milk and Gatorade.

Hunter's counts were excellent today. Her ANC was 2240, which is great... the steroids she was on last week probably drove that ANC up so it's a little inflated, but that's OK by me. ;)

She got her 14th PEG shot with no problems. 16 to go!

All in all a good week... even her 'roid rage wasn't so bad this time around... sure she didn't sleep at all this week, but who needs sleep?!

:)

- Katie

Monday, May 3, 2004 3:34 PM CDT

Just home from clinic and I feel like we aced the SAT's or something!! Hunter's ANC came back to 2350 despite a runny nose and cough this week!!! She is back on her chemo (though at a 60% dose).

Again it feels odd to be virtually doing cartwheels at the thought of pumping my baby full of chemicals... but we're celebrating a little today nonetheless!

The rest of the week was pretty uneventful. (Yes, uneventful *IS* good!)

Hunter continues on the cream cheese diet, though she did eat a little single-serve size tub of peanut butter (straight from the tub) at clinic today, so maybe her tastes are starting to change again. She starts her steroids again tonight so I'll be interested to see what this week's chemo craving will be!

Thanks again as always for your thoughts and prayers.

A very dear friend of the family was diagnosed with CML (chronic myologenous leukemia) last week, so any extra thoughts and prayers for her would be appreciated. We love you B...!!!

- Katie

Tuesday, April 27, 2004 9:22 AM CDT

Well if you read last week's update... I could probably just write "ditto" and be done with it...

After 2 weeks off chemo (other than her PEG shots) Hunter's ANC is at 700, down from last week. She did wake up with a little cough and a runny nose this morning, so it's likely that she's just fighting off a bug (Hayley is just getting over a full-blown cold and an ear infection right now). Still, we were expecting great numbers this week so it's a little discouraging.

All her other counts are in good ranges so the ANC isn't particularly worrisome to her oncologists. It's more a bother for us here at home as we have to be very careful about keeping her in as close to a germ-free environment as possible.

There was good news with her weight as she managed to maintain 8.8 kilos (19.4 lbs) from last week, despite yet another week of eating cream cheese and not much else! (blech...)

She did also get her all-important PEG shot (12 down, 18 to go!)

That's about it for this week... I hope next week won't be another "ditto"!!!

- Katie

Tuesday, April 20, 2004 5:06 PM CDT

Clinic this week was pushed back to Tuesday due to the holiday here... (Patriot's Day, a.k.a. Marathon Monday, a.k.a. "let's give everyone in Massachusetts the day off so they can all go cheer on the runners and/or go to the afternoon Red Sox game" Day!) Sorry for those of you who checked on her yesterday and got worried... (and we do very much appreciate that you're checking!!)

Speaking of the Boston Marathon, we had several friends who ran it yesterday... all of them to raise money for Dana-Farber and the Jimmy Fund. And Julie Spencer, the first American woman to cross the finish line, just happened to be running for Dana-Farber as well! While I was jealous of all those people crossing the finish line as I watched it on TV, I am very glad I was not out running 26.2 miles in the unseasonable 85 degree heat!! Maybe next year... :)

OK I know nobody cares about me... ;) Back to Hunter. She put on half a kilo (1.1 pounds) on the cream cheese diet, which is great for her. She is back up to her high of 8.8 kilos (19.4 pounds). She had a little nausea and vomiting this week (chemo or tummy virus, we're not sure - probably virus) so that weight gain is actually pretty amazing.

Her ANC is up but not by much. From 530 to 720. Better, not great. She got her PEG shot (11 down 19 to go!) but the rest of her chemo is on hold again this week.

I had a long talk with Dr. Jason and Dr. Lewis Silverman, who is the principal doctor on the current DFCI ALL research study. I was worried because her counts have been so low lately. Basically their opinion was that she is just super-sensitive to the chemo, and may have been fighting off a virus during the week. All of her other counts (white cells, red cells, hemoglobin, hematocrit, platelets, etc.) are in good shape.

So the plan next week, assuming her counts are better, is to change her to 60f the original chemo dose and see how she responds. (She had been on 80reviously). This is OK because they use counts as the arbiter of how much chemo any kid (or adult, for that matter) needs. As long as her counts are in the right ranges, they know the chemo is doing its job. Right now it just seems it's doing its job a little TOO well.

Phew... if you made it through that epic, I'm impressed!! I should add one last thing... the weather has been BEAUTIFUL here lately... in the 60's, 70's, even the 80's yesterday. The girls have been outside every day playing on their swings and riding their bikes. (Well where Hunter's concerned it's more me pushing and her going along for the ride, but that's OK!) Hunter especially gets SO excited to go outdoors... the exercise is good for her but more importantly, I love seeing her so happy. She plays so hard you would never know she's supposed to be sick.

- Katie

Monday, April 12, 2004 7:21 PM CDT

So much for our high hopes for a stellar ANC this week... Hunter's counts were all OK other than the fact that she's got an ANC of 530 - just a smidge from being neutropenic again. (If she gets a fever while neutropenic, it's an automatic bid to hospital admission.)

Her other counts were just high enough that she was able to get her PEG (10 out of 30 down!!!) but she is off chemo for the rest of the week. (Actually a long week too... next Monday is a holiday here because of the Marathon.)

She cracked me up at clinic today, she insisted on wearing her pretend stethoscope this morning, and at one point her nurse came in, saw the stethoscope around Hunter's neck and called her "Dr. Hunter." Hunter responded with an emphatic, "No!! I Dr. Jason!" (Have I mentioned how much she loves Dr. Jason?!)

Her weight is still on the low side at 8.3 kilos (18.2 lbs). Surprising, considering her new favorite food is cream cheese... that's cream cheese, NOT bagels with cream cheese... pure, straight cream cheese from a bowl with a spoon. (blech!)

- Katie

Monday, April 5, 2004

Another blissfully boring day at clinic today. Hunter's counts were all up in good ranges except for her ANC which was only 610, down 10 points from last week.

They're taking her off of the Bactrim again to see if her ANC comes back up. Her monos were 17 (very high) which is a good indicator that her ANC is on it's way back up.

Since we're at the end of another 3 week cycle, she'll get her 6-MP tonight and Methotrexate tomorrow, and then no more chemo meds until next Monday. Hopefully the combination of no Bactrim, high monos, and no chemo for 5 days will be enough that her ANC will bounce back and bounce back high!

No problems with the PEG again today... that's 9 shots down and 21 left to go! Almost a third of the way there... :)

(Of course that's not the end of her chemo, but it's the end of her shots, which is the worst part of all this for her right now. Plus, January 2006 seems so far away... it's much easier to concentrate on the milestones along the way rather than end-of-treatment.)

Both she and Hayley continue to handle all of this in stride. They are young enough that they don't fully realize that going to the Jimmy Fund for chemo, having a port, and being bald and pale, aren't exactly the routine for most kids.

The Jimmy Fund does a great job of making clinic days fun for the kids... (yes, they have FUN at clinic!) The girls actually look forward to going (despite Hunter being well aware that clinic involves a minimum of two needle pokes.) They both came home with an armload of donated Easter goodies today, and they got to sit in on a music class where they played musical instruments and heard stories.

I've added a few photos to the photo gallery of Hunter at clinic... playing on the big boat-themed play structure they have in the Playroom, and getting a ride in the Big Yellow Taxi (she was singing "My Girl" as I pushed her through the halls and over the big glass Pan-Mass Challenge bridge that overlooks Jimmy Fund Way and Binney Street!)

- Katie

Monday, March 29, 2004

NO DRAMA TODAY! Yes, we were gone from 8:30 to 5:00, essentially for a blood draw and a shot... but still... NO DRAMA!!

Got a laugh this morning when I was putting the Emla (numbing cream) on her port site. She announced quite clearly, "no port today, Mommy!" (Translation: "thanks, but no thanks... I'm all set with this chemo business!") Nice try kid... :)

Hunter's counts did come back on the low side... ANC is 630. Not neutropenic but uncomfortably close. Could be the tummy bug she's been fighting off all week, could be the Bactrim she's on. (Bactrim = Antibiotic taken prophylactically to prevent pneumocystis pneumonia - can lower counts as a side effect. She just switched from a different antibiotic back to the Bactrim as it's a more efficient medicine... we'll have to see if it suppresses her counts.)

Despite a steady diet over the last week of nothing but Pepperidge Farm Goldfish, whipped cream, and Gatorade, the kid managed to pack on 3/10 of a kilo (over half a pound!) since last week. Not bad for a kid who only weighs 19 pounds to begin with. :)

We were glad to see Dr. Jason back from his vacation... He and Hunter share a mutual admiration for each other. She busted out in a big grin when she first saw him today. :) For a kid to love her doc even after all the pokes and icky medicines... well that's saying something, I think.

Hunter tolerated her PEG shot as well as can be expected. She knows the drill now, so when she sees our nurse coming, she starts yelling, "OWIE OWIE!!"... well before the needle even makes an appearance. I remembered to bring a Dora the Explorer Band-Aid this week and that seemed to help with the post-injection recovery.

When we got home, there was a package in the mailbox for the girls from Grandmom and Grandpop. One of the things in it was a chocolate bunny. Hunter made me unwrap it and just held it lovingly in her hands for a while. I realized she'd never had a chocolate bunny before and I told her... "you can eat it..." I wish I had a camera on me to catch the grin on her face when she put the bunny's ear in her mouth and realized... IT'S CHOCOLATE!!!

On a side note... congrats to Dennis, Lori and Rachel on the arrival of little Ryan Christopher!

- Katie

Tuesday, March 23, 2004 6:57 PM CST

Hunter got her Lumbar Puncture today, hooray!! (Yes, it's a little odd to cheer for your child getting stabbed in the back with a needle, but such is the life of a cancer parent I guess.)

She did GREAT... barely a wiggle or a whimper from her although the procedure took a little longer than I'd have liked. She recovered pretty quickly afterward and other than being a little tired, she seems to feel OK.

I don't know which is really worse for her, the actual needle in the spine, or the fact that she can't have breakfast or her beloved Gatorade on procedure mornings. It's so hard to explain to a 21 month old that it's the mean doctor's fault she can't have her morning Gatorade, and not mean Mommy's fault!!

Her counts are down again, as I expected. Her ANC is at 830, but her monos are at 11, which is good. [Blood Counts 101 - lesson 2 - when the monos are on the high side (11 is high) it means that counts are on their way back up.] So looks like she has managed to fight off the icky tummy virus and her body is bouncing back.

Her white count is extremely low but since the rest of her numbers seem to be on the rise, her white counts should follow. She also starts a new cycle of Prednisone (steroids) which should help her body get those counts back in line.

So glad that's out of the way... her next LP isn't scheduled for another 9 weeks now... and by that time she'll be more than halfway through this phase of treatment!! Yay... :)

- Katie

Monday, March 22, 2004 2:45 PM EST

Somebody really needs to explain to this child that while Children's Hospital and the Jimmy Fund Clinic are lovely facilities, and we are very lucky to get our treatments there, ONE VISIT A WEEK IS REALLY MORE THAN ENOUGH, THANK YOU VERY MUCH!! :)

Hunter had a little episode of vomiting and high fever last night, resulting in an ER trip to Children's with Daddy. She got IV antibiotics, hydration, and glucose, and her fever dropped to 99.8. Her blood labs came back showing an ANC of nearly 3000, the highest it's been since back in the days before leukemia, when we were blissfully unaware of what an ANC is!!

[In case any of you also remain blissfully unaware, here is the Blood Counts 101 explanation... ANC = Absolute Neutrophil Count... the percentage of white cells (called polys and bands) which fight bacteria in relation to the total white blood cell count.]

The drop in the fever and the high ANC was enough to get her a ticket home, and the two of them arrived here at about 3 AM.

At 6:30 AM I got up to take her in to clinic. The on-call oncologist in the ER had told us we should keep our clinic appointment. So off we went... only to find out when we got there, they wouldn't do her lumbar puncture as scheduled since she still has a low-grade fever!

Her ANC was down to 1680 this morning, just 10 hours after the 3000 level. I know that's because she's fighting off this little stomach bug, but I'm stingy with the precious ANC points... I wish she didn't have to spend them all in one place!!

Hunter did get her PEG shot, and while her protests get louder over that one by the week, she had no allergic reaction. That's 7 down, 23 to go.

We get to go back to clinic again tomorrow... lucky us... if her fever is gone, they will do the LP. If not, she will get IV antibiotics and the LP will be later this week.

While I'm definitely not looking forward to that LP, it would be nice to get it over with... and have a day off from the hospital... before we start it all over again next Monday. :)

Hayley (and Bad Dog Jeter) in the midst of all this are comfortably ensconced at Grandma's house... eating ice cream, (yes, I bet Grandma is feeding Bad Dog ice cream too...) going out for lunch, and staying up until 9:30 at night... Grandma's house is so much more fun than ours!

- Katie

Monday, March 15, 2004 5:10 PM EST

Another long (but uneventful) day at clinic... whew!! Hunter got her second dose of the PEG today and again no reaction. If she can just keep this up for the next 24 weeks now... (xx fingers and toes crossed xx)

The likely alternative to the PEG (if she does develop an allergic reaction) would be Doxorubicin. A nasty, nasty chemo drug with nasty, nasty side effects. The minor ones are hair loss and nausea (Hunter had it during Induction and it was the only thing that's made her nauseous so far).

The major scary side effect is that it can cause heart damage. Before she was able to get the Dox in the hospital at Induction, she had to have an EKG to confirm her heart was in perfect shape, and to give a baseline for the future.

It is such a nasty, nasty drug that there is actually a lifetime maximum dosage. So please continue to say a prayer, keep fingers and toes crossed, etc. that Hunter keeps tolerating the PEG!! If she can handle the PEG she should never have to go near Dox again.

I had our nurse cancel the home health nurse for tomorrow. I'm officially going to be giving Hunter her Methotrexate on my own. We've got a porous bandage over her port and I've got some Detachol (adhesive dissolver) from clinic so hopefully the hard part (removing the bandage) will be a little easier this week.

I'm just watching Hunter playing and along with her usual bead necklace adornments, she's wandering about with a toy stethoscope around her neck. Wonder if the kid is planning a future in medicine after all this? :)

Oh, almost forgot... Hunter's hair is starting to grow back!! So far it's just a little MORE peach fuzz than before... she's blond so she still looks bald... but both Mike and I noticed it independently so I'm pretty sure we're right. Hooray for hair!! ;)

- Katie

Tuesday, March 9, 2004 10:08 AM EST

Big day for Mom today... I played nurse and gave Hunter her Methotrexate by IV this morning. The visiting nurse watched to make sure I was doing it right. It actually was fairly simple... after having seen it done a gazillion times in the hospital and at clinic, I guess I learned the drill by osmosis.

The harder part was de-accessing her port. She does NOT like having the bandage over her port removed (can't blame her, that thing is sticky!!) But once I got the bandage off, was able to remove the needle, no problem. (Thank heavens for a big bowl of Pepperidge Farm Goldfish crackers to distract the patient!!)

I'll be glad to be able to do this myself every Tuesday from now on, rather than relying on the visiting nurse. :)

- Katie

Monday, March 8, 2004 4:29 PM EST

BIG sigh of relief! We are home after a rare uneventful day at clinic. Hunter did just fine with her first PEG shot today. Of course, she could develop an allergy to the PEG at anytime (like she did with the e-coli Asparaginase), but the more of her 30 injections she gets, the better. 5 down and 25 to go!

Her ANC is up to 980 today which is pretty good... especially since she's taking all of her chemo again, and continues to fight off the eternal winter runny nose. The reduced chemo dosage seems to have worked well for her.

Not much else to say... but no news is good news, right? :)

There are a few new photos in the Photo Gallery... including one of Uncle Joe trying to get a bite of Hunter's macaroni & cheese... NOT gonna happen, Uncle Joe!!

Thank you for all of your continued thoughts and prayers and for the notes of support. They are very much appreciated!!!

- Katie

Monday, March 1, 2004 7:53 PM EST

Another marathon day at clinic... we are just now getting home at 7PM!

The day started out great, by some miracle there was no traffic on the way in, and when we got to clinic we were greeted by some of the Pan-Mass Challenge staff and the Jimmy Fund photographer. Hunter is going to be a "Pedal Partner" for this year's PMC. (The PMC is a 2-day 200 mile bike ride in August, from Sturbridge to Provincetown. They are hoping to raise $17 million for the Jimmy Fund this year!) We'll get a team of riders assigned to us who will ride in Hunter's honor. There's a water stop in our town and we'll be there to cheer for our team!

The photographer took tons of photos of Hunter and Hayley too... Hunter may appear on the PMC website soon! (www.pmc.org) I was glad they were wearing cute outfits today… ;) Hunter looked especially adorable in her St. Patrick’s Day bandana (aka “do-rag”).

Blood counts came back and her ANC is 810… on the low side but not neutropenic this week! That’s a minor miracle since she’s been fighting off a little cough and runny nose for the last few days.

There ended the peaceful easy part of the day. Hunter must really love the Jimmy Fund because this is at least the third time we’ve been there past closing time! She got her 4th of the 30 Asparaginase injections at 1:45. At 2:45, she broke out in hives all over! After two doses of Benadryl through her port, the hives turned into a very angry-looking rash… not exactly an improvement! They tried giving her hydrocortisone through the port and nothing was happening… finally, FINALLY the rash started to disappear… five more minutes and they were going to admit us to Children’s!!

They are sure that this was a reaction to the Asparaginase. About 50% of kids have reactions eventually. They will try a different type next week. Many kids who are allergic to the e-coli version (what Hunter got) do just fine on the PEG version so we will keep our fingers and toes crossed that she tolerates the PEG next week. If not she will not be able to get any more Asparaginase. While the thought of avoiding 25 ouchy injections is nice, we want her to get *all* of her chemo… we know the protocol works best that way.

They are also keeping an eye on her walking. The Vincristine she takes every 3 weeks can cause parasthesias in the hands and feet, and lately she’s been doing a lot of walking around on her tippy-toes. Maybe due to the Vincristine, maybe because she’s 20 months old and thinks it’s funny… who knows? If it looks like a problem we will get a physical therapist involved to give us some exercises to do with her. (The tippy-toe thing is actually really funny when they are trying to get a height on her… she lets them think she’s going to cooperate… and then she gets up on her toes and makes herself taller!)

One of these days we are going to be one of the families that comes to clinic in the morning and leaves by lunchtime… maybe next week? :)

- Katie

February 23, 2004 3:00 PM EST

The good news for this week is that she has managed to avoid fevers (and the hospital) even while her counts were so low. The not-so-good news is that we found out at clinic this morning, her counts are even lower this week than last. So she's still neutropenic, and we're still stuck in the house, bathing in Purell!

Since Hunter's counts are still low, her oncologist cancelled tomorrow's dose of methotrexate, and replaced her Bactrim with another type of antibiotic (kids with ALL take antibiotics to ensure they don't develop pneumonia.) They will also reduce the dosage of her chemo by 20% starting next week and see how she tolerates that.

The low counts still are having no effect on her overall well-being though... other than getting a little stir-crazy, she is her usual happy, energetic (sometimes overly so!) troublemaking self! We're certainly very thankful for that.

- Katie

February 17, 2004 2:44 PM EST

We are just back from the Jimmy Fund Clinic (a day late thanks to the holiday). With all of the Monday and Tuesday kids getting their treatments today, the place was a zoo!

The good news is that she tolerated her shot very well again! The not-so-good news is that she is neutropenic (ANC count extremely low, leaving her susceptible to infection.)

Since she's neutropenic, any fever between now and next week will automatically buy us a hospital stay. So we are going to be stuck in the house again this week, washing our hands and using Purell like maniacs, hoping to keep all the germs at bay.

There is a silver lining I guess... since her counts are so low, she gets a little break from her chemo. No methotrexate tomorrow and no more 6-MP until her next cycle in 2 weeks. Hopefully this week off will be just what her little body needs in order to bounce back again!

- Katie

February 9, 2004 5:19 PM EST

One down... 29 to go... Hunter had the first of her 30 weekly treatments today.

During this part of treatment she gets a shot of Asparaginase each Monday. It's a nasty one! The older kids with ALL describe it as a burning feeling during the injection. Hunter did great today as usual! Did not enjoy the shot but the only tears were from Mom. :)

When Hunter was initially admitted back on December 20, her doctors implanted a Porta-Cath in her chest. To access the port, it's just a quick needle stick each clinic visit (and we use a numbing cream ahead of time so she barely even notices it!) That allows them to draw blood and give her intravenous chemo without any further needle sticks or IV's. They deaccess her at the end of the treatment day.

Today for the first time, we came home with her port accessed. She will require an intravenous dose of one of her chemo meds (Methotrexate) tomorrow. We have a visiting nurse coming to do it, and I will learn how to do it from here on out. Nothing too complex, just attaching the syringe to the tube for her port, and a quick push. After her chemo I'll have to deaccess her port (removing the needle that provides the access.) I think getting her to hold still for me will be the hardest part! We may need to bribe her with chocolate donut holes or Cheetos... ;)

Thanks for all the messages of support... they are much appreciated. It's hard to believe it's been less than 2 months since this all began. It feels like a lifetime. Knowing our friends and family are behind us has made everything more bearable. :)

- Katie

February 6, 2004 5:46 PM EST

Well this is one of those "no news is good news" kind of updates... Hunter is feeling great and seems very healthy lately!

We are enjoying our week off from chemo. She's discovered a new passion for dancing... ("dancing" = running around the kitchen in circles until she's so dizzy she falls over giggling... generally accompanied by one big sister dressed as a princess, and one puppy with no rhythm...)

It is heartwarming to see her running and playing like she never was sick. The kid truly amazes me every day. :) I can only imagine what she'll be like in 2 years when she's finally off of chemo and free to be 100% herself again!

- Katie

February 2, 2004 6:30 PM EST

Hunter had her last Lumbar Puncture (for a while anyway) today!! It's been a rough two weeks with a bone marrow biopsy and 4 LP's (not to mention 5 days inpatient at the hospital!!) but it's OVER and she actually gets the next week 'off'. No chemo until next Monday!! The Patriots win the Superbowl and Hunter gets a week off from chemo... life is good! :)

Two phases of treatment down, two more to go. The next phase is 30 weeks long and will consist of 10 3-week cycles, and we'll only have to go to the Jimmy Fund once a week on Mondays.

For now, we'll just enjoy our 'vacation' from chemo... it's the only one she'll have for the next 2 years!!

- Katie

January 31, 2004 12:33 AM EST

Hunter is home and sleeping! I actually wish she wasn't because I haven't seen her since Tuesday night. Unloading her Dora backpack and tea set from the car was more fun than it should have been. I'd like to think that she missed me too but she probably just wanted to have TIVO for the Super Bowl : ). Can't wait to see her tomorrow...

- Mike

January 30, 2004 6:30 PM EST

6:30 PM and still no fever... we're going HOME!!! :) We're just waiting for the doctor to come and discharge us. Hunter is sitting on the couch screaming "JACKET!! JACKET!!" Guess I shouldn't have told her we were going home just yet... ;)

- Katie

January 30, 2004 11:53 AM EST

No fever since about 8:00 last night! We just got done with rounds and Hunter's team of docs says if she continues to do well we can go home tonight. :)

One little glitch is that Hayley was exposed to Fifth Disease at preschool this week. We will have to keep a very close eye on both of them to make sure they don't get sick. We kept her home from school today... we'll have to decide what to do next week.

For now we're just glad Hunter's feeling better and that we might get to watch the Patriots win the Superbowl from our own living room!!

- Katie

January 29, 2004 11:12 AM EST

We are still in the hospital. Hunter's fever came back last night. Right now we don't know the cause. Her docs said it could be viral, bacterial, or fungal. She has no outward signs of anything bacterial or fungal, and nothing is showing up in her blood cultures. So the thought right now is some type of virus.

They plan to take her off of her antibiotics today and see how she reacts. Her ANC and white counts are good, so if it's a viral infection, she should be able to handle it on her own, and the antibiotics don't work against a virus anyway.

The good news is that she is feeling better and acting like herself. She even ate a bit of a chocolate chip cookie this morning. :) She is drinking Gatorade like she's a marathon runner... ;)

The not-so-good news is that her lumbar puncture had to be rescheduled due to the fever. Now we are planning on Monday.

We still aren't sure when we will be coming home. Could be as early as tomorrow, but we may be here until Monday (or later). She needs to be fever-free for 24 hours.

- Katie

January 22, 2004 1:32 PM EST

As most of you know, Hunter was diagnosed with Acute Lymphoblastic Leukemia (ALL) on December 20, 2003. After 19 days of chemotherapy, her counts were high enough and she was healthy enough to be discharged from the hospital. We came home on January 9, 2004.

We found out she was officially in remission (no sign of cancer in either her blood or her bone marrow) on Monday, January 19. The chemo she will get over the next 2 years is designed to keep her in remission and to prevent future relapse.

We continued her next phase of chemo as an outpatient at the Jimmy Fund Clinic at Dana Farber Cancer Institute here in Boston.

39 days into this journey, and 16 days after being discharged from her initial hospital stay, we are back in the hospital. Hunter had her 3rd of 4 Lumbar Punctures (where she gets chemo injected into her spinal fluid) yesterday. She handled it like a champ, but woke up at 12AM today with a fever.

I brought her to the ER and they opted to admit her for a few days to administer antibiotics and observe her. If all goes well we may be out of here again before the weekend.

We are squatting in the Bone Marrow Transplant unit this time as the Hematology/Oncology floor was full! The BMT floor is actually very nice... the rooms are modern and comfortable, and there are computers, VCR's and Sony Playstations in the rooms.

The tradeoff is that because most of these kids have severely depressed immune systems, Hunter isn't able to walk freely around the floor. Considering how stir-crazy she tends to get, I sure hope we are able to go home sooner rather than later!

Other than the fever, she is doing extremely well. All of her blood counts are excellent (her ANC - infection fighing ability - is up to 8000 from a low of less than 10 when she was initially admitted!) She continues to behave pretty much like her old self... making trouble and melting hearts. :)

- Katie

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