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[hugman]

How bout we just try to match the donation and hope the mp3 comes to us on the wave of karma.  we only need 120 people to donate 15 bucks. And those of us who can do better will.

[aenematron]

'tron is not kidding around.

Apparently I was! It slipped my mind ever so briefly. The special bit was gonna be tailored for my wife for our anniversary. I really hated myself for an hour after, but ultimately I was happy to help get the amount so high, anyway.

[iAmBaronVonTito]

a Valentine's update: http://www.carepages.com/carepages/Anna_Ives/updates/1985201?client_code=lebonheur&ipc=mur

Happy (Late) Valentine's Day
Posted 12 hours ago
Hey everyone - hope you had a nice holiday weekend! Anna's been making valentine's cards this past week and happily handing them out to everyone - it's been great.

On the whole this has been a good week. We got through the first full week of treatments with anesthesia without any real serious trouble. And it made everything so much easier to have Grandma Darla in town to help.

The process with sedation is much better than without. Anna goes back a little earlier each day and does a little checkup with Nurse Rachel. Then she goes in with one of us and gets her sleepy medicine while we are holding her. We have a pretty good routine in place now. She wakes up in recovery about an hour later, eats some crackers, reads 'If You Give a Moose a Muffin' with us and then we leave for the day.

However, her appetite has been decreasing (which evidently is normal) and she's showing signs of fatigue at this point. She also got sick a couple of times this week - which could be because of the radiation, or the anesthesia, or more of a secondary thing. We got some anti-nausea medicine to give her as needed. She doesn't seem to feel bad after getting sick... And she didn't get sick at all yesterday - so we'll see how it goes next week.

We moved into our apartment on Friday. Pretty exciting. Nice to be downtown and just a short walk to her treatments. We have a great view of the Charles River and Cambridge from here.

Grandma Darla watched the kids Saturday night - so we walked over to the North End and found a little Italian joint to eat dinner on Valentine's Day. And we were able to get out on Sunday to catch a movie. Having my mom in really let us relax a bit - it was really nice. We needed it.

Hope everyone has a nice week. We've got lots of pictures to upload - we'll try and get them up tomorrow.

[iAmBaronVonTito]

an update with photos!

A great week!

Hey all -

Anna had a great week last week. Great appetite, no nausea... so it appears as though she might have just had a virus the week before. Aron wound up with similar symptoms last week as well, but he shook it off pretty quickly.

We've gotten into a nice routine here at the new place. Anna gets really excited about checking the mail downstairs with a key, doing laundry in the basement, chatting with the doorman, riding on the subway and taking a taxi.

So on the whole - Anna's doing great. Although one new symptom has developed: her skin on her forehead and the bridge of her nose (where she is getting treatment) is starting to get red and itchy. So we are starting to put some special lotions on her forehead and under her eyes, which should help. They did warn us this was a possibility, but it doesn't seem to be causing her too much discomfort yet so that's good.

We had another good weekend, too... Christopher's Haven set us up with tickets for Disney on Ice, which I took her to on Saturday... and then Amy took her to the Magic Treehouse Musical at the Colonial Theatre on Sunday and they had a great time.

Got back into the treatment routine today - and the port access went more smoothly than ever... despite the fact that I forgot to apply the numbing cream before we went in... somehow it seemed to actually help, Anna wasn't thinking about it as much this time, and Rachel had the line in before she could get upset about it. I wish all my screw-ups turned out this well.

We really appreciate everyone thinking about us - the support you give us helps on so many levels. Thanks a lot.

We finally loaded some new pictures up covering some highlights from the past couple of weeks. Sorry it's taken so long to post them.

Good night - have a good week.

[iAmBaronVonTito]

hello, everyone.  i hope no one minds that ive been updating on Anna Ives; here is the latest:

Getting closer

So we are now less than three weeks away from finishing treatment and coming home. Pretty exciting!

Anna had another great week last week, and we are already halfway through this week. Her weight is holding steady and she's knocking out her treatments just fine. She always looks forward to Fridays - when she gets her "tubey" out and gets to pick out toys for herself and Aron. Monday's not the best day - since they access the port - and she was a little worried about it this week - but she did just fine, yet again.

We heard about the snow in Memphis... crazy! We'd like to apologize to all our neighbors from whom we stole winter clothes - sorry, umm, we hope you're staying warm?!

It snowed again here Sunday and Monday, but total accumulation wasn't too bad. What's been bad is the big wind off the Charles River combined with the cold. It was a windy 8 degrees early this morning. We are extra glad to be so close to the hospital now - so that we don't have to commute through this mess.

Amy got us set up at the MGH gym this week - in an attempt to keep us from getting in any worse shape and to help with our cabin fever. It's actually been really nice to go and take a little exercise break - I think we both feel a bit better since we started. And Anna and I got to swim in the indoor pool Sunday during Family Swim Day - she loved it! We'll get new pics up this week.

Anna palled around with another proton patient John (and his sister Katie) a bunch the last two weeks. They're staying just down the hall from us in another apartment that's part of Christopher's Haven. It's been nice to see her playing with other kids.

We also got together with our friend Margaret and her son Harlan a couple of times this week, and Margaret even watched the kids Sunday night for a couple of hours so Amy and I could take a break and get out for dinner... it was nice.

We also got together with Grampy, Aunt Peg, Uncle Dana and Uncle Joe for dinner Saturday night - it was great. Once again, we realized how lucky we are to be in a place where we have the support of family. It makes such a difference.

Family has been on our minds this week, too, as my grandmother passed away. We wished we could have been there to support my mom and family and pay our respects... but unfortunately it wasn't in the cards. We wrote up some thoughts and they were passed along during the service on Monday, so I'd like to think we played a small role. She will be missed.

Take care everyone... can't wait to get home.

[orator]

I don't mind, thanks for the updates

[iAmBaronVonTito]

The end is in sight

Alright - here we are - just five treatments left for Anna! Last week was smooth sailing - and we had great weather over the weekend - so we tried to make the most of it. On Friday we went to the Children's Museum with Anna's friend John and his brother Andrew. It was giant, and the kids loved it. Lots of great activities... they went nuts.

Saturday - Anna and I went over to the park near our apartment and played a bunch. Then we all walked over to the North End (Italian district here), and grabbed pizza and cannoli. Then we got together with Grampy and crew in Waltham for dinner... we've been really enjoying Saturday evening family dinners.

I got out and saw some friends from Atlanta that were playing in town on Saturday night (Gentleman Jessie and the Black Lips)... it was nice to hang out with Joe C, Amy S and lots more Boston Goners, and great to catch up with ATL pals Jessie and Dave.

Sunday - more park time... then we took a trip in to Chinatown for lunch, and got over to the Contemporary Arts Institute to check out the Shephard Fairey exhibit. Great stuff.

Monday morning we got back to the routine - Anna was not excited about having her port accessed... but we got through it OK. She and John played all afternoon - and Amy and I got out for dinner together (thanks Robin!)... it was nice.

Finally got some more pics up this morning too.

Looking forward to Dabadoo (Amy's dad) arriving Saturday. He'll spend the last week with us and fly back with Amy to help with the kids. Our friend Josh is going to fly up next Friday to make the drive back with me. We can't wait to get home.

Hope everyone's having a good week.

[iAmBaronVonTito]

Last treatment tomorrow!


We had a really nice weekend. Our Waltham family and the Peggy McGlone dance studio crew put together a big St. Patrick's Day party for Anna on Sunday - which was lots of fun. Anna's friend from her daycare days at FLICC, Kayleigh Carson, was able to come in from Connecticut, and Margaret brought Harlan, so the three of them bounced around the room all afternoon. Dabadoo made it to Boston just fine and in time for the party. It will be nice to know he'll be there to help Amy get the kids back home safely on the plane.

Well we are here at last - Anna's last treatment is tomorrow. There is a tradition of ringing a bell in the reception area when a patient has completed their treatments - and Anna's excited about it. We've talked to Anna's school, and they will be ringing the school bell along with Anna when she's done with tomorrow's treatment... we saw another girl do something similar a few weeks ago and it was really special.

One thing that is nice about the small size of the children's treatment program here in Boston is that it almost forces interaction between the kids and parents... which i think is a good thing. It's scary for everyone when you first arrive to start treatment - but once you get into a routine and know what to expect - it gets better. We had great help from Cameron and his mom when we arrived, and now that we are close to leaving, we have been able to help other families get through tough times in the past couple of weeks. It feels good to play a role... I think Anna's enjoyed helping the new kids too.

It's been a long couple of months. We are so proud of Anna for staying strong and toughing it out. We feel lucky to have found our way here to MGH, with this team. We are hopeful that we have closed this chapter in Anna's life - and that she will ultimately be a stronger person for getting through it.

We'll put a recap and pictures from tomorrow up soon. Goodnight everybody!

[Steve in North Hollywood]

Awesome!!!  Thanks for keeping us posted, Baron!

[iAmBaronVonTito]

i know...isn't it fantastic?!

[iAmBaronVonTito]

*admittedly, yes, i cried.  please read:

Ringing the bell
(Posted 2 hours ago)


She did it!

Anna's last treatment was Wednesday - we are all done!

They made the whole thing very special - she had some great surprises when she went back. One of the best things was a butterfly mobile that Anna worked on last week with the art therapist, Stefanie. Stefanie had the technicians, other patients, nurses and even Amy and me create butterflies too - so in the end she has this very special hand-made keepsake from her time here.

After treatment was over - we called the school. All her classmates went outside and they rang the school bell and cheered her on! The sound filled up the reception area through the speaker on the cell phone. It was great! Then we rang the bell and took some pictures. I've posted a few.

Feels great to be on the other side of this, although I don't think it will truly sink in until we get home. We're packing today, I'm glad that Josh is coming up to do the drive with me.

We'd like to say it one more time - the support from our family and friends (new and old) has meant so much to us. We couldn't have done this without you. We can't wait to get back home and into the swing of things.

Hope to see everyone soon.

[iAmBaronVonTito]

Home


Wanted to get a quick update in this morning.

We all made it back home safely this weekend. Amy, her dad and the kids flew in on Saturday - and were greeted at the airport by a welcome crew of friends and neighbors! amazing! Check out the pictures (thanks for sending, Leah!).

Josh flew up to make the drive with me - it was really nice to have a pal for the ride. We split it over two days - and got in late Sunday afternoon.

I can't tell you how great it feels to be home.

We're looking forward to seeing everyone, catching up on rest, unpacking and getting back into a routine.

Have a good week, everybody!

[Steve in North Hollywood]

This last picture almost made me cry.

[iAmBaronVonTito]

an update from zach ives:

Anna is 5 today!


Hooray!

Sorry the updates have started coming more infrequently. But it's nice not to have much to report for a change! Anna could not be doing any better. We got her a "big girl" bike with training wheels for her birthday - and gave it to her on Saturday. She's basically been on it all the time since then complete with a cool pink helmet from Dabadoo and Nana! She had a small party at the bowling alley which was a lot of fun. And she made some paper flowers with Grandma for Amy for Mothers Day - it was really nice. It's been a great weekend.

Our super hero neighbors threw us a great big welcome home bash a couple weeks back - and it was a blast! And our friends at Le Bonheur also had a welcome home party for us with a pink theme that Anna loved – pink cupcakes, pink icing, pink lemonade…you name it, it was pink. Nurse Tracy even showed up wearing a pink shirt and matching pink shoes! We feel so lucky to have such a strong support network. We've got a few new pics up from the parties - more coming.

At the end of this month (May 26) we've got our first follow-up MRI at St. Jude - along with meetings with Dr. Kun and Dr. Gajjar, and Dr. Boop a couple days later. Dr. Liebsch wanted a 3-6 month wait before we took an MRI - but St. Jude wanted to do it sooner (and we do too). Hopefully we'll have some clean scans to share at the end of the month. Once we get that hurdle behind us, we can make arrangements to get her port removed this summer.

Good night.

[orator]

 Goodness, she was only 4 years old going through all of that?