Saturday, December 25, 2010

best. christmas. ever.

We set out to make this the best christmas ever (because if you don't, then what the hell's the point?), and we succeeded. The kids had a blast and we did also. Matthew has been feeling ok. He is starting to experience some more serious symptom of graft vs host disease. Mostly leg rashes but also some considerable nausea. He felt pretty good for most of the day but also had some stretches where he seemed very tired and weak.

The pic above pretty much says it all.

Claire did not want to go downstairs without Matthew.  She waited for him in his bed while we unhooked his IV fluids and then they went down together.  Awesome big sister.

Present hangover

 harley davidson santa. 
(claire is not pictured because, as she said, "I like Christmas.  I'm just not that into Santa)
We missed the special needs days for the Naperville Santa so learned of this dude during our normal stalking of harley davidsons.  worked out well as there were very few people there.  Still very limited as far as places we can go.

Friday, December 17, 2010

Day 100!!!

Today is 100 days since Matthew's stem cell transplant.  It seems like only 10,000 days ago.  In all seriousness, this is a huge milestone for him, and us.  Even better is that he is doing awesome.  All of the results from our recent tests have been clear.  No sign of cancer.  He is off the steroids and is dropping a few of those lb's. 

One of my laptop's hard drives decided to blow up.  It was the one that I use to hold all of my photos.  Fear not.  In what could be the only smart thing I have ever done, I have uploaded every photo in its original size up to Picasa

this is one of my favorite pics although when cropped this close is a little blurry.  Can't smile any bigger.

Bryan and I limbering up before the rudolph ramble last sunday.  Notice the people in the background looking away, almost certainly because of the concentrated and unbridled awesomeness.

The crew before the ramble.  It was cold and windy but a lot of fun.  and the proceeds and toys from the toy drive went to CMH.

Claire lost her first tooth this past week. 

Matthew got a hold of these glasses

Claire and her friends Julia and Elise with their long flowing locks of blond hair at the theater for the premier of Tangled.  Post movie reviews were all positive.

Monday, December 06, 2010


December 3rd marked 1 year since we learned of Matthew's diagnosis.  He is doing well and is emerging into an almost normal little 2 year old.  Looking back on the past year makes me appreciate even more the doctors and nurses who cared for Matthew.  I am continuously amazed by this group of people.

The Wednesday before Thanksgiving, we learned that the Make-A-Wish foundation was going to grant Matthew his wish.  This is awesome news and if you are looking for an end of the tax deduction, pull the trigger on this great organization.  A few of Matthew's friends have had wishes granted for them and the results are smiles on sick kids faces.  We are meeting with some of the Wish grantors this weekend and I am already instructing Matthew that his wish should be for 3 additional wishes.  We'll see how far we get with that.  First snow of the year was Saturday and the kids had a blast.  The sled hill was a little spotty but they didn't care. 

Monday, November 22, 2010

Team Matthew deliciousness

We have been on the receiving end of some damn good food over the past year or so.  From east coast whoopie pies to across-the-pond shephard's pie, and pretty much anything in between.  Our good friend Melissa surprised us today at the hospital with some Team Matthew cupcakes which were awfully good and awfully good for you.  Pics below.  Also throwing in a pic of Matthew's Ommaya wound.  It looks pretty sweet. 


going home today

Sunday, November 21, 2010

the dude

the dude is doing well and is returning to his old self.  the surgery last night went smoothly and he appears to be relatively unaffected today.  No word on when we will be released.

Saturday, November 20, 2010

Florida girlz & Goodbye-a Ommaya

The specific bacteria has been identified and after careful consideration, Matthew is having his Ommaya reservoir (the port in his head) removed tonight.  Apparently, infections love to cling to foreign objects, like plastic.  So while the antibiotics are generally effective against the bacteria, one the infection clings on to the plastic port, the only way to get rid of the bacteria is to remove the foreign object.  At this point, we are not going to put it back in.

The girls in Florida are very nice to include Nicole in all of their festivities.  The pix we have been receiving from them have been entertaining us all day.  Tomorrow is their half marathon benefiting the Leukemia and Lymphoma society.

Jennifer, Katherine, and Heather in their race gear.
Heartfelt letter to cancer on the back of the race jerseys.

Friday, November 19, 2010

well, this completely sucks!

Where to begin.  Today was supposed to be a great day but it was doomed from the very beginning.  Nicole was to go to Florida for her half marathon and desparately needed and much deserved relaxation time with her friends.  The trip was in fact a generous gift from them to her.  It was not meant to be I guess.  Matthew woke up vomitting at about 4am and we could tell then that something was not right.  I encouraged Nicole to continue on her trip while I took Matthew to Children's Memorial for what I was hoping was a quick checkup.  She got as far as sitting on the plane when she received a call from me saying that the doctor's were admitting Matthew due to possible infection.  She immediately got off the plane (props to the Southwest Airlines crew who I hear responded with the utmost courtesy and understanding as Nicole had to quickly deboard) and made her way over to the hospital. 

Matthew has a bacterial infection in his spinal fluid.  Bacterial Meningitis.  It's not good, especially in someone like Matthew who has a compromised immune system, although its way better than a cancerous relapse which is what we were fearing.  Today turned pretty scary...Matthew was lathargic and seemingly in a deep sleep and the doctors were obviously concerned.  The good news is that we look to have caught it early.  Right now he is getting a broad spectrum of antibiotics until the exact bacteria is determined when the meds can be more specifically targeted.  His fevers are coming and going and he is sleeping a lot.  Prognosis is good.  Probably a few days in the hospital until we are fever free and can go home.  Our doctors and nurses are incredible.  As much as I hate being here, there is no place else I would rather be with my little hunk of burnin love (nicole's nickname for him).

Wednesday, November 17, 2010

day +70

Nothing but good news to report from the Furibondo estate.  Matthew is doing well and he is slowly weening off of his steriods and giving Trader Joe's a chance to replenish their midwest pizza supply.   Nicole is running a half marathon this weekend in Florida so I will be home with the shorties.  Should be disasterous.  Fall is awesome and this fall has been one of the best, especially with the kiddos.

Play-do mustache

Tuesday, November 02, 2010

the results are in

I was just voted the coolest person sitting on my couch right now.  Clearly my constituents were pleased with my past performance, most notably my work on 'being awesome' reform.

I realized a short time ago that I have not paid a penny in income tax yet this year.  don't worry though...I have a plan.  I have taken my social security card and made a couple of slight modifications.  I changed one of the One's to an 'L' and then I took the 6 and turned that into an ampersand (&).  See how that works...totally untraceable.  No way the IRS figures out this one.

Matthew's clinic visit today can be deemed a success.  Dosage on the steroids has gone down a little bit.  The weening process is a slow one.  Took him and Claire outside to rake leaves when he got home and they loved it.

Monday, November 01, 2010

Daddy funny is

Below are some pics of the kiddos from yesterday and the halloween festivities.  Claire went as Jesse and Matthew went as Woody.  The little guy is still barred from the general public but we did stop by a few close friends houses.  He is doing very well and, although he dressed up as Woody, he may have been better suited as Yoda from Star Wars.  He is taking his verbs and moving them to the end of his sentences which is completely hilarious so instead of saying 'Daddy is funny', he says 'Daddy funny is'. 

You may notice the feeding tube is gonzo.  I ripped it out accidently when I lifted him up while sitting on the tube.  That was like 4 days ago and he finding a way to take his meds.  7 in the morning, 2 in the afternoon, and 6 more before bed.