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[reallynotclever]

     Happy Birthday Anna!  I Hope you had an awesome 5th birthday party.  You are truly the wind beneath my wings.  Thank you Tom & the good BaronVonTito for sharing Anna's story with all of us & for fighting the good fight.       

[Come on, Jason]

More great news:

"Our family would like to say a big thank you to everyone who participated in the Anna vs. Cancer auctions and other fund raisers that have taken place in Memphis and elsewhere.  We have been completely blown away by the support we've received. Friends, family and strangers alike have all contributed in wonderfully creative ways to help us out. And that makes us feel really honored, humbled and proud of our extended community. We're a part of something pretty special here in Memphis and at Goner.

I'm happy to report that Anna finished her radiation treatments in March - and we are now home and trying to get back into our normal routine. Her side effects have been minimal - some skin irritation on her forehead that has pretty much gone away now, and some minor hair loss, facial swelling and fatigue - but nothing that keeps her down. If you didn't know what she's been through - you'd never notice any difference.

Now that she's completed this round of radiation following successful surgery last October, the doctors feel like Anna has a very good chance of never having to deal with this again. We'll continue to monitor it at St. Jude with quarterly MRIs starting next week. We will continue to update her care page (http://www.carepages.com/carepages/Anna_Ives) to let everyone know how we are doing.

We consider ourselves very fortunate. Because of our strong support network, flexible workplaces, and some amazing people at Le Bonheur, St. Jude and MGH, we've gotten through this pretty well so far. Many people dealing with similar situations are not as lucky. So our plan is to continue the Anna vs. Cancer Fund, and help the hospitals that have helped us, and also help individual families that don't have the resources that we were able to tap into. We hope to start this new direction for the fund in the fall which we hope will culminate in another auction in early 2010. We'll make announcements as plans fall into place.

Please let us know if you want to be a part of this going forward. We are looking forward to putting this together and building on the momentum this started from. It's a powerful thing. And it can help lots of others just like it helped us.

Thanks everyone.

Zac, Amy, Aron and Anna Ives"

http://www.carepages.com/carepages/Anna_Ives

[orator]

Now that she's completed this round of radiation following successful surgery last October, the doctors feel like Anna has a very good chance of never having to deal with this again.

that's awesome

[iAmBaronVonTito]

A Good Checkup


Hey all - good news to share tonight. Anna had her first post-treatment scan at St. Jude today - and they said everything looked great.

Anna was a trooper this morning. It helped to have our good friend and across-the-street super neighbor Josh accessing her port and taking labs... He really helped her calm herself down. We were really proud of how well she handled it. The rest of the day was a long series of waiting rooms and appointments... it's a busy place and nothing really ever happens on time.

But around 4 we finally saw Dr. Kun and he was able to tell us the good news - the scan looked great. They didn't even see any internal swelling or anything from the radiation... everyone seemed to think she's doing wonderfully.

This was our first chance to talk with Dr. Kun at St. Jude about our experience at the Proton Center at Mass General - so it was nice to tell him about their great program. It was Dr. Kun who steered us to Boston for the proton treatment in the first place.

We'll go over and see Dr. Boop on Thursday - and hopefully get to see the scans ourselves. It does look like we will keep Anna's port in this summer - evidently the risk of infection is lower than we thought - so we'll just flush it monthly and we'll have easier access for the next couple of checkups.

Alright - thanks again for the support everyone.

Good night!o

[iAmBaronVonTito]

another update:

Back to School


Hey all! Sorry it's been a while. We thought we'd get a quick update out to everyone tonight.

We've had a great summer. We took a trip with our friends the Phillips to Naples, Florida in June - our first family beach vacation! It was an amazing time.

Anna and I also went to Oklahoma for a weekend - she was excited about seeing the new colts at Aunt Marti and Uncle Tom's and having dinner with Grandma Lee in Tulsa. Another highlight for her was a trip to Frontier City, an OKC amusement park where I worked while I was in high school. Ah, the memories.

Now we are back in school. Anna just got through her first week as a "recess kid" in her primary class at Maria Montessori School... she's now one of the older kids in class (it's primarily 3-6 year-olds) and she's really enjoying the afternoon session of outside playing and doing "more work after recess."

Aron turned one this summer - and he's now walking around and into everything. It's great! He's still doing two days a week at mother's day out and just moved up to the toddler room.

We celebrated the return to school with a neighborhood 'back to school' party across the street at the Murphy's house - I've posted a couple of pictures. It was a blast.

Work's been busy and good for both Amy and me. We've gotten into a pretty good routine over the summer. It's a huge help to have my mom here doing after school pickups and spending days with Aron - and the kids just love her... It's really so nice.

This week Anna has another checkup. Tomorrow and Wednesday we'll be over at St. Jude for lab work, clinic visits and an MRI.

We'll report back on Wednesday evening - I know we'll have a lot of people sending good thoughts and prayers... and we really appreciate them!

Talk with you soon.

[iAmBaronVonTito]

Results tomorrow

Hey all - just a quick note... we are back home and getting ready to sit down to dinner. It was a long day - and Anna did really well. Anna's scans did not get read today - evidently there has been a backlog most of the summer - and this happens more now than it used to. Anyway, we'll have to wait until the morning to get the results.

We'll fill you in tomorrow wants we get the scans.

Have a good night.

[iAmBaronVonTito]

In the end - good news

Well - it's been a long three days of waiting, testing, scanning, consulting and scheduling.

So Anna's MRI results this time around were more complicated than normal. This is understandable - Anna had an obscure tumor in an atypical place - and we had proton radiation treatment, rather than the more typical photon treatment - so there are many variables. We also have a team of doctors that stretches to the East Coast... so getting everyone's heads together isn't always easy.

We are also evidently in a key window following radiation treatment (we didn't really know this going in) but often the radiation causes changes over a period of time that can make reading the MRI more difficult as well.

Ultimately the news was good - while there are a couple of small changes in her scan - they are the kind of changes that are almost always temporary and related to radiation therapy, rather than new tumor growth. My understanding is that they will most likely just disappear on their own over the next several months.

It's hard to be sure about anything - and the news has arrived in little bits throughout the day. But ultimately after talking with doctors this afternoon - we feel much, much better. They are also sending the scans up to Dr. Liebsch in Boston - and so we'll know even more about it (especially how these changes relate to proton therapy) next week.

Once again - I must reiterate how much it helps to have a great support and medical team that truly cares about us to help us get through this sort of thing! And in the end - getting good news is all that matters. We'll take that every time - no matter how long it takes.

I'll send over another update after we hear back from Boston next week.

[iAmBaronVonTito]

No more button!
originally Posted Nov 20, 2009 1:18pm


So just a quick follow-up email today... it's been a good week! We got clearance from Anna's team to go ahead and get her port removed. Anna and I went over to St. Jude for pre-op and her final access on Monday morning - then Amy and I took her back in on Tuesday for a quick surgery to get it taken out. Everything went smoothly and she woke up feeling good... happy and proud that her button was gone! No more monthly port accesses, which never really got any easier as we went along. So now she'll just need a normal IV put in once every three months or so when we go in for MRIs. Hopefully a three month break from sticks of any kind will make her a bit less anxious the next time we have to do it (although I'm sure that's just wishful thinking).

[iAmBaronVonTito]

Winter Checkup tomorrow
originally posted Jan 12, 2010 12:16pm


Happy new year everyone!

We had a great holiday season... we stayed in Memphis for Thanksgiving and Christmas for the first time - and while we missed seeing so many friends and family, it was nice to have a relaxing holiday.

Wanted to drop a quick note to let everyone know we are headed back in for a checkup at St. Jude tomorrow. This will be Anna's first scan without her port - so we're not real sure how she will do getting her IV. It might be a little tough. But once we get through that, everything should be pretty easy. Dr. Gajjar will be out tomorrow - so we are hoping we can catch up with Dr. Kun to get a preliminary scan reading before we leave in the afternoon... it's so hard to wait overnight for results.

Also - we've got some friends who will be going through some big stuff next week. Although Connecticut is home, Ian Hayward and Tamiko Toland and their kids Aiden (who is a classmate of Anna's at MMS) and Colin, have been here in Memphis for several months while Colin goes through a chemotherapy program at St. Jude. Colin is fighting a brain tumor called an anaplastic ependymoma, and Dr. Boop will be going in to remove some remaining tumor tissue next week at LeBonheur. The surgery is tentatively scheduled for next Friday. We'll be sending big love their way - hope you can too.

You can find out more about Colin here:
http://www.colinlovestractors.com/

We'll pass along our scan results as soon as we can. Thanks so much for all the positive thoughts. Take care everybody.

[iAmBaronVonTito]

Prelim = Clean
originally posted Jan 13, 2010 8:28pm

It's been a long day - but I just got off the phone with Dr. Kun and the preliminary report on Anna's MRI is that they look great. We are very relieved. We'll meet with Dr. Gajjar tomorrow for a clinic visit - and I'll write up a more detailed report tomorrow or Friday. Thanks for all the thoughts, prayers and love. We feel them.

[iAmBaronVonTito]

Clean Scan Confirmed
originally posted Jan 15, 2010 10:37am

We went over to St. Jude yesterday and had a chance to look at the scans ourselves... Dr. Gajjar confirmed Dr. Kun's preliminary report on Anna's scans. Everything looks good. There is no new tumor growing - and the changes they had noticed in the last two scans have not changed any more - which further confirms that these were related to the radiation treatment rather than new tumor growth. So it was a good visit - and we can breath easy for another 3 months.

We are going to go in for an eye exam next month - along with an endocrine appointment. All of these are normal follow-ups... I'll post an update after we have those visits.

[orator]

cool