Sweet Tomatoes

Sweet Tomatoes in Aurora is hosting a fundraiser event tomorrow evening from 5-8pm.  Proceeds from this fundraiser go to the Leukemia and Lymphoma Society. 

When:
Wednesday, October 27th.  2010
Where:  map
986 North Route 59
Aurora, IL 60504

Download the flyer here. 

'roids

damn, those steroids are nasty stuff.

check out the before and after pics of the little guy.  The one on the left is from the end of september when he got out of the hospital.  The one on the right is from today (allegedly).

Ok.  that was sort of a joke (allegedly).  but look below to the actual before and after.  He is still one of the cutest little devils ever but it is so difficult to watch him.  wish I could step in and take it all away.  we are encouraged to talk to other parents of Leukemia kids and they have told of similar experiences with the steroids.

 Aside from the weight gain, he is doing pretty well.  The GVH seems to be under control and he is crazy about his Claire Bear.  They have this little helicopter they fly around the crib and put their halloween baskets on their heads to protect themselves from the inevitable helicopter-to-head collisions that seem to be frequent.

there's a new sheriff in town

Matthew busted out his halloween costume yesterday and refused to take it off.  



99%

We received some very good news late last week regarding Matthew's bone marrow transplant.  The latest tests have revealed that 99% of the Matthew's cells are his new cells (mine).  We sort of already had a feeling this was the case as women (and even some dudes) have been increasingly unable to resist Matthew's attractiveness.  This is a curse I have long had to live with and something I unfortunately passed along to the little guy.  Below is a pic in the hospital bathtub during one of our last nights there.

Wanted to send along a special thanks to Traci Puk and Ellen Keeler for coordinating the pumpkin patch fundraiser for CMH.  "Awesome" does not even begin to describe the effect the toys resulting from their efforts will have on sick children like Matthew.  Here is a picture of Claire scarfing down a donut (or 3).

home

the dude has returned home.  very happy to be back with 'Claire Bear', as he calls her.

Update

Below is Jenn Rachmiel's marathon jersey she wore today.  She ran as part of the Leukemia Society's Team in Training.   Pretty awesome, eh?  She delivered a beat down with a 4:12:19 on a hot day for running.

The dude is pretty much fever free and his rash has subsided almost entirely.  Looking for an early dismissal tomorrow.  He has dominated 2 entire pizzas yesterday and 1 pizza so far today.

26.2

Huge props to the marathon runners tomorrow, especially friends Jenn Rachmiel and Heather Glynn.  Good luck ladies!!

We, unfortunately, will be watching from the hospital bed.  Little dude was re-admitted last night strictly as a precaution as he spiked a fever.  Should be home on Monday.

Team Matthew & Johansen Farms Fundraiser

Johansen Farms in Bolingbrook, IL is teaming with Team Matthew to purchase new toys for Children's Memorial.  Matthew has received, and still receives, toys when he goes to the hospital for both his ER and clinic visits.  Most of them are pretty awesome, like the bad a$$ cyclebike (M's word for motorcycle) we got in the ER last sunday.  Matthew even got to play with it a little bit when I was done.  But they're just toys, right?  Wrong.  They often make a really bad situation tolerable for both parent and child. 

What:
•Petting Zoo
•Hay Rides
•Corn maze
•Two Story Airslide
•Train Rides after 1:30 pm
and Much More!
 
•When: Thursday Oct. 14th & Friday Oct. 15th 9am-7pm

•Where: Johansen Farms 710 W. Boughton Road Bolingbrook, IL 60440
 
You need to bring the flyer with you.  It can be downloaded here.  Admission is $7.50 with $2 going directly into the hands of sicks kids in the form of kick a$$ cyclebikes (or comparable). 
 
Special thanks to Traci and Ellen for setting this up.  Extraordinary.

and like everything else on the planet, its on facebook.  Check it out!

life is good

well...maybe not good...but at least it doesn't suck nearly as much.  The little guy came home last night and the happiest person in the world was probably Claire.  I overheard her talking to Matthew and say, "Matthew, I love you as big as the whole city." 

Below are some pics of our first release from the hosp after the transplant.  As soon as he got out, he wanted to go look at the boats.  So we took a short detour to Belmont Harbor and checked out the boats.

The hospital equivalent of a u-haul.

Mark your calendars for this awesome Team Matthew event.  More details coming soon.

Back in

Early (very early) this morning, Matthew and I made a trip back to the hospital.  We liked it so much, we decided to stay.  More accurately, he pulled out his NG tube twice and he was very very itchy so we felt more comfortable having him at CMH on 4W where he could be cared for by the incredible nurses there.

my bears shirt

Today, Matthew had diarrhea that went all over my Chicago Bears shirt.   At the time, I failed to notice the symbolism.  After watching that game, the symbolism is pretty clear.

Update

Sorry for my negligence in updating the blog.  Things have been a bit crazy.  Matthew is doing pretty well all things considered.  It looks like he may be able to come home at the end of this week.  He gets GVHD (Graft vs Host Disease) symptoms on and off but so far, this has been relatively minor.  We have been busy readying the house in preparation for his return. 

94%

We received the results from the DNA test which showed that approx 94% of Matthews cells are his new ones.  This is pretty awesome news.  95% is about as good as you can get.   So the engraftment seems to be right on track.  Of course close monitoring and tests for the next several weeks but we should still be able to go to Uncle Mikey and Aunt Jen's home tomorrow. 

We are electing to put the feeding tube back in tonight to make the oral medications easier.  He is having a very difficult time taking them.  He has 13 different doses per day of the various meds.  It became pretty clear that there is no way we can expect him to take these orally.  We have tried the plugging of the nose, the jamming of the syringe down his throat, the small amount in the cheek, pretty much everything.  he either spits it back at you or he throws it up a few minutes later.

Day +13

Just talked to Nicole.  Looks like the little guy may be getting out of the hospital on FRIDAY.  This is abnormally fast but he is doing that well.

cells

the boy has cells. wbc of. 58 and ANC of 464. its a big deal. mid next week should no whose cells they are. all indications are positive.

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Day +10

i think this blog may prove useful one day to doctors as they go back and try to pinpoint the exact moment when i lost my bleeping mind.

day +10 actually starts in 2 minutes.

Day +7

One week down.  Still no counts, as expected.  The little man is a warrior.  Plain and simple.

Bad diarrhea.  Feeding tube.  All sorts of pain.  Mucositis (lots and lots of mucus).  And you know what?  He still sits up and wants to color a picture for his big sister Claire.  Take that, cancer.  You piece of crap.

Day +5 Bone Marrow vs Stem Cell Transplant

What is the difference between a bone marrow transplant (BMT) and a stem cell transplant?  It's a good question and one that a few people have asked me.  Here's the teach. 

Stem cells can be collected in a few different ways.  One of those ways is to retrieve the stem cells directly from a donor's bone marrow (like we did for Matthew).  Stem cells can also be retrieved from circulating blood which is not as rich in stem cells so it needs to be filtered.

The two terms are often used interchangably.  All bone marrow transplants are stem cell transplants but not all stem cell transplants are bone marrow transplants. 

Take the rest of the day off.

Day +4

the kid continues to battle.  He is on a feeding tube and pain meds to manage all of the many different things going on in his little body.  I have a bunch of pictures below from the past week.  One of my favorite moments was being able to help coach Claire's first soccer game on saturday. 

Nicole, Matthew and I the morning of the transplant

In recovery

Me, the dude, and the bone marrow

Claire gearing up

Coming off the field after the game

tubes, tubes, and tubes

not happy

CMH 2010 - Furibondo Interview

Nicole taking Matthew's story worldwide on the 101.9 Children's Memorial Hospital telethon.
She amazes me.  Awesome.