Claire Biscuit 6.0

The month long celebration that is Claire's birthday continued last weekend with her b-day party at The Kid's Kitchen in Naperville.  Claire and her friends had a blast and made some pretty good looking pizzas and cupcakes.  I took about 1,000 pictures which yielded about 8-10 decent ones.  That seems to be about my ratio.  The one below is my favorite.

Claire is 6

Claire turned 6 last week.  Had an awesome birthday bash.  Claire let Matthew blow out her candles which was priceless. 

 

 

3/3

On Thursday, March 3rd, we celebrate the 4th birthday of our daughter Meghan Rose (sometimes affectionately known as our 'Angel Meghan').  None of you ever met Meghan but I would like to tell you a little bit about her.  She was stillborn on March 3, 2007, only 2 weeks before her due date of March 17th.  She was beautiful.  I remember vividly, sitting with Nicole in the hospital bed at Elmhurst hospital, holding Meghan after she was born, talking to her about how much we already missed her and how she will forever be an important part of our family.  Our puzzle has a big piece missing.  I am not one to think that Meghan is all around us or looking down on us.  Maybe I am too calloused, obtuse, cynical, angry, stubborn, etc, etc.  A friend of mine recently wrote that she sees her late mom in the faces of her little boys.  I liked that.  I am reminded of Meghan often when I look at Meghan's brother and sister...and her mom.  Meghan, we miss you and love you, now more than ever. 

PICC pics

OH MY GOD!!!!  Those were the words Matthew chose to scream when he woke up from sedation and looked at his arm to find that his PICC line had been removed.  He then demanded the 'tubies', as we took to calling them, be put back in immediately.  We pretty much give in to anything the little guy wants, except for this.  The PICC line is out and is staying out.  Today was Matthew's last dose of intrathecal chemotherapy (chemotherapy delivered to his spinal fluid) and a good opportunity to pull it out seeing that there are no more scheduled sedations.  Tonight he took his first bath in a long time without his arm wrapped up like a leftover breakfast sausage.  Here are some pics of the picc.

Matthew showing off his fine physique before bath time (as you can clearly see my cells have already made a noticeable difference to his chiseled torso) 

The PICC line.  Also called, the PowerPICC because of something having to do with the maximum flow rate.   

Team Matthew soundtrack - side A

Album name: My One Shot
A Mohawk Nation Production

• P.O.D. - Boom
• Black Sabbath - Iron Man
• Eminem - Lose Yourself
• Black Eyed Peas - Anxiety
• Linken Park - Shadow of the Day
• Eminem - 'Till I Collapse
• The Hitmaker - Don't Stop Believin' (The Amazing Journey Remix)
• Beat It (Single Version) - The Essential Michael Jackson
• Papa Roach - Not Listening

The American Cancer Society - 2011 Relay For Life of St Mary's University:

My friend and neighbor Abby Brown is participating in the ACS Relay for Life event in March. Her team, named "Team Matthew" in honor of the bow wearing little dude, is comprised of students at St. Mary's University. Donate. Deduct. Destroy(cancer).

The American Cancer Society - 2011 Relay For Life of St Mary's University:

daughters, daddys, and dudes with bows

Saturday, Claire and I went to our first daddy/daughter dance.  We first went out to dinner with some friend before arriving to the dance fashionably late.  I explained to Claire that you don't want to be the first person to arrive at these things as it generally takes a little while for the funkiness to get cranked up.  We had an awesome time.  It was interesting to note that, just like in high school and jr high, dudes have no business on the dance floor. 

Speaking of dudes.  matthew was caught wearing bows in his hair yesterday.  There is an urban legend that I also wore bows/barrettes as a young gent experimenting with various levels of accessories but no photographical proof exists.  I have informed the doctors that something must have gone terribly wrong with the bone marrow transplant, especially given the ultra-manly and testosterone-packed cells he was given.

Snowzilla

We had a blast with the snow yesterday after Chicago got slammed with just under 2 feet.  Watching the storm on Tuesday night was pretty awesome.  Below are a few of the pics we took.



less kissing.  more shoveling.





Claire in her fort. 









Teamwork



Ridin' the rails

Its the end of January which means what little was left of our sanity and patience has run out and we are moments away from stepping in front of a moving bus if we don't get out of the house.  I think we would try to move somewhere warmer if our mortgage was not farther underwater than the titanic.  This morning we took a ride on the Metra train from Naperville to Downers Grove.  Yes, you can probably see Downers Grove from Naperville but who cares.  It gave us something to do and the kids ended up loving it.  After arriving in Downers Grove, we quickly made our way over to the Starbucks for our caffeinated treats.  Matthew has developed a taste for coffee which is fairly hilarious.  We have had to back him off from his favorite, the Americano (he took a few sips of my americano, which is straight expresso and water, and said "that is the most delicous ever!), to a more kid friendly decaf vanilla latte. 

No news is good news

Matthew and Claire had a good time making cookies this past weekend.  We also came downstairs one afternoon to find Matthew sitting on the counter near the lollipop jar.  He had pushed a kitchen chair over to the counter and climbed up and was sitting there like it was no big deal.  I know what your question is going to be and the answer is yes, we are the type of parents who leave a 2 year old sitting on the counter while we go and get the camera.  Overall, he is doing great.  Sometimes difficult to discern between potential problems and him just being a pita 2 year old.

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.

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.

12/6

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.