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February 23, 2008 Print

February 23, 2008 

Hi Malena Fans, 

We want to start this update off by telling you about our friend, Mary Koeugh.  Mary is raising money for the Leukemia Society, in Malena’s honor, by participating in a team in training event this June.  She will be riding her bike 100 miles around Lake Tahoe.  In order to be involved she needs to raise $4,800.  If you would like to donate money towards this GREAT cause please check out her web page:

 http://www.active.com/donate/tntwnyfl/tntwnyflMKeough  

Malena is continuing to do well.  We had a scare a couple of weeks ago, before we left for Florida.  Her doctor mentioned that she might be having a relapse and even though Dr, Fitzpatrick assured me that she was 99.9% sure that Malena was fine I “freaked” out!  We had a bone marrow aspiration done and we found out that indeed she is not relapsing! THANK GOD!! 

With that good news we were able to enjoy our family vacation to Florida 100%!  We drove to Atlanta to visit with Pete’s brother Dave and his wife, Kelly.  We also stopped into see my Aunt Jan and cousins, Dan and Michael.  On Monday we met mine and Pete’s parents in Orlando.  We all went to “the Magic Kingdom” on Tuesday.  That was a blast!!!  How often do you get to go to Disney World with all 4 grandparents?  Let me tell you, that is the way to go!!!!  On Wednesday, Malena woke up with a fever of 101.2 so we had to head into the Arnold Palmer Children’s Hospital while our parents took the rest of the crew back to Venice.  We were in the ER for 5 hours while their docs consulted with ours.  They also did blood work and gave Malena some antibiotics.  Fortunately Malena’s counts were close to the 500 number that we needed to be discharged and they let us go with the promise from us to return if her cultures came back positive.  We never heard a word from them and the fever went away.  Thank God again!   Thursday was Pete’s big 40th!!  We had fun celebrating in Venice and then he had even more fun when his brothers showed up on Friday in a limo and took him back to Tampa for the weekend!  He swam with the manatees on Saturday and said it was great!  He wants the whole family to do it when the kids are older. We left Venice on Tuesday and headed to Hilton Head to visit our good friend Jon.  We love going there!  Hilton Head has always been a favorite place of mine and Pete’s and it is fun going there with the kids.  They had a great time finding sand dollars, jellyfish, starfish and crabs on the beach!  Some of those things traveled home with us, but today when I unloaded the car I left them in there.  YUK!!!! I’ll let Pete deal with that!!!  On Thursday we went to Jersey to visit my brother Joe, Kim, Kristin and their new baby, Joe.  He is beautiful!  Only 3 weeks old!  I could just eat him up!  We finished our trip with a stop at Pete’s brother Steve and Laurie’s. It was fun getting the cousins together.  

All in all it was a wonderful vacation!  It is nice to do these normal, fun family things!  We have our ups and downs but we are learning to appreciate the good times.  Our greatest teacher is Malena!  She has to be the most optimistic person I know!  She has her moments but she is usually full of life and laughter!  

Well, she just informed me that she has her pj’s on.  I’m going to go and get my hug, kiss and nibby nose from her!!!

Life is good! 

Thanks for checking in!

Love, Suzanne   

 FYI – for those of you in Buffalo, Malena will be on the Variety Club Telethon on Sunday, March 2.  She is scheduled from 2-5pm.  I don’t exactly know what to expect but I think she will be on tv.  Camp Good Days asked her to be their young ambassador for the event.  As you know we love Camp Good Days so we were honored that they asked her!  Her bio is on the Variety Club Website.  If you click on 2008 ambassadors you can scroll down to her.  Here is the link:

 http://www.variety.buffnet.net/html/telethon_info/young_ambassadors.htm

 
January 15, 2008 Print

January 15, 2008 

Happy New Year!!!! 

We have high hopes for this year:  Joe and Kim’s baby arrives very soon; both sets of our grandparents are in Florida at the same time so we are going to attempt a trip to Disney World for 1 day with them, we will also show them the Give Kids the World Village while we are there; Pete turns the big 40 (I of course will stay 39); Malena will stop taking Chemo on November 9!  Nothing but good things!  What could possibly go wrong? 

Malena has been asked by Camp Good Days to be their ambassador for the Variety Club Telethon on March 2.  We love CGD so we are very excited that she was asked!  What an honor!  On Sunday we will be attending an orientation and I think we sign up for a time to be on the telethon.  We will definitely let you know what time to look for her.  You might not want to miss it due to the fact that she will be taking steroids on March 2!  Who knows what we will get.  It could be hysterical, fun Malena of hysterical monster Malena.   

Today we had a blood draw.  Nurse Beth came at 9 am.  We love Nurse Beth but we hate what she has to do to Malena.  Nurse Beth hates it too!  When she arrives, Malena’s eyes looks so empty, it breaks my heart.  Beth is very good at accessing her quickly but it never gets easier.  Thank God right when Beth pulls the needle out of Malena’s Mediport the life returns back into her eyes!  She is now happy and playing games with Tony, this morning’s blood draw the furthest thing from her mind.  I wish it were that easy for me!

If all goes well (which means no fevers or extra trips to the hospital) we should only have about 30 more draws.  In the scheme of things that really is not that many!   

Thanks for checking in! 

We really appreciate all of your prayers and support! 

Love, Suzanne

     
 
December 21, 2007 Print

December 21, 2007 

Merry Christmas!!!! 

We can’t wait!!!! It has been a very busy time for us as I am sure it is your home too!  We have a fun Christmas week planned!  Tonight the kids are sleeping over at Nana and Grandpa’s house.  Then tomorrow is the Carolcade which takes place in front of Vidlers, in the center of the village.  We get together with the rest of EA and sings carols.  Afterwards we go to Grammy and Grandpa’s house for cookies.  Christmas and Christmas Eve will be spent with our families.  We are so lucky to have a lot of our relatives so close by!  Then the Mercurio brothers and their families arrive Wednesday.  Lots of fun things are planned for that week! 

Well the good news is Malena’s counts have finally gone down to that therapeutic range that I mentioned in the last update.  The bad news is that her counts have dropped.  But we’ll take it!  That just means her body is kicking some leukemia butt!!!!  That’s our girl!!! 

We wish everyone a wonderful Christmas and New Year!  May it be filled with family, friends and good health!   

With much love, from our home to yours, 

Suzanne and Pete

 
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