Furi-blog

Newspaper article re: lemonade stand

2011-08-12T12:11:00.002-05:00

Downers Grove Lemonade Stand 2.0

2011-08-07T20:50:00.000-05:00

Caroline Vazquez and Grace Marino, the Team Matthew all-stars who last summer held an unforgettable lemonade stand are doing it again. Proceeds benefit the leukemia research foundation. The stand runs Thurs, Fri, and Sat (Aug 11, 12, and 13th) 12pm - 5pm. 611 Davis St. Downers Grove, IL 60515. The links to two sites below have some extra dets.

http://msl-otg.eviesays.com/event/iid/4734740/name/Team-Matthew-Lemonade-Stand.html

http://triblocal.com/downers-grove/calendar/2011/08/11/lemonade-stand-for-team-matthew-2/

Matthew was not able to attend last year's lemonade stand but he is certainly looking forward to going this year.

foot hurts (from kicking so much ass!!)

2011-08-01T20:17:00.000-05:00

Not sure where to begin. I had hoped to deliver a blog post well before now but I was awaiting a bipartisan resolution to issues regarding my personal debt ceiling. Sure hope there are some folks out there still listening. For those of you that are...I am happy to report that everything is going well on all fronts. Despite the weather this summer, which has been complete garbage, I have to say that this has been the greatest summer ever. Matthew is, as the title of this blog suggests, kicking ass. All of his tests have revealed no sign of cancer. He is also off of his Cyclosporine, which is the nastiest of all his medicines. We have, in the true spirit of living every day to its fullest, been taking full advantage of each day. Not even sure where to begin. We had an awesome 4th of July at our friend's lake house, took a road trip down to st louis to see my sister and BIL, Matthew has started pre-school and potty-training, and Claire has learned how to ride a two wheeler. Below are some pics that hopefully tell the story better than I can.

everything but the kitchen sink

Preschool. lets do this.

It's like he knows that one day, it will be his.

potty training is going well after some initial confusion

Matthew 3.0

2011-04-28T20:22:00.000-05:00

Statistics: "Matthew, you have just over a 50% chance of seeing your third birthday."

Matthew: "Statistics, you have a 100% chance of being punched in the face...by me!"

Matthew had a great birthday yesterday. For kicks, I went back and looked at pics from his 2nd bday.

The dude is def looking and feeling better. He continues to remind us to make the most of every single day.

pro bowl caliber

2011-04-17T20:49:00.001-05:00

This morning Claire and I participated in the NCO fun run. Despite some chilly temps, we had a blast. Claire has an interesting running style, characterized by short bursts of blazing speed followed by long 'recovery periods'. Jay Cutler, the quarterback of the Chicago Bears was there running the race with his cousin who lives in the area. No, Kristin Cavallari was not there :(

After the race, we kicked it over to our neighborhood easter egg hunt.

Claire Biscuit 6.0

2011-03-21T19:58:00.000-05:00

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

2011-03-13T18:50:00.000-05:00

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

3/3

2011-03-02T21:41:00.000-06:00

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

2011-03-01T20:45:00.001-06:00

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

2011-02-14T20:34:00.000-06:00

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:

2011-02-09T09:49:00.000-06:00

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

2011-02-07T12:12:00.000-06:00

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

2011-02-03T14:32:00.002-06:00

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

2011-01-30T15:22:00.001-06:00

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

2011-01-13T14:47:00.002-06:00

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.

2010-12-25T21:05:00.002-06:00

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!!!

2010-12-17T13:55:00.000-06:00

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

2010-12-06T21:38:00.000-06:00

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.

Team Matthew deliciousness

2010-11-22T21:05:00.000-06:00

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.

home

2010-11-22T12:23:00.002-06:00

going home today

the dude

2010-11-21T22:28:00.000-06:00

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.

Florida girlz & Goodbye-a Ommaya

2010-11-20T19:47:00.002-06:00

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.

well, this completely sucks!

2010-11-19T21:53:00.000-06:00

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).

day +70

2010-11-17T09:42:00.000-06:00

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

the results are in

2010-11-02T21:26:00.002-05:00

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.

Daddy funny is

2010-11-01T20:14:00.001-05:00

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.

Sweet Tomatoes

2010-10-26T12:55:00.000-05:00

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

2010-10-25T22:05:00.000-05:00

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

2010-10-21T22:01:00.001-05:00

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

99%

2010-10-18T18:45:00.000-05:00

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

2010-10-12T10:19:00.000-05:00

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

Update

2010-10-10T16:50:00.001-05:00

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

2010-10-09T11:28:00.000-05:00

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

2010-10-08T10:02:00.001-05:00

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

2010-10-07T19:10:00.002-05:00

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

2010-10-04T20:15:00.000-05:00

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

2010-10-03T22:54:00.000-05:00

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

2010-10-03T19:17:00.000-05:00

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%

2010-09-23T23:49:00.000-05:00

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

2010-09-21T09:54:00.002-05:00

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

2010-09-18T10:22:00.001-05:00

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

2010-09-17T23:58:00.001-05:00

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

2010-09-15T20:58:00.000-05:00

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

2010-09-13T21:14:00.001-05:00

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

2010-09-12T11:01:00.001-05:00

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

2010-09-10T20:19:00.001-05:00

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

Children's Memorial Telethon

2010-09-10T09:29:00.000-05:00

10:15 am CST this morning. Nicole is scheduled to be on the Eric and Kathy, CMH telethon telling Matthew's story.

101.9 or listen live here or WATCH it live here.

mr fix it

2010-09-09T21:24:00.001-05:00

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Day +1

2010-09-09T09:42:00.000-05:00

Captians log September 9, 2010. (Sorry no pics. The camera was left at the hosp.)

First, thank you for all of the well wishes and encouraging words. Team Matthew kicks ass as usual. They must have worked because yesterday, aka Day Zero, went perfectly. I should say that everything that mattered went perfectly. Major props to the Children's Memorial staff of nurses and doctors who have honestly become part of our family. The harvest was done by 9am or so and Matthew had received his new cells by about 2 in the afternoon. That's when superhero me started taking a turn southward.

It started with a small headache. then a larger headache. Then i was in Matthew's room puking my guts out. Good thing I was in a hospital. I rode the elevator down to the ER with Nicole and checked in...again. They gave me what I can only assume was the equivalent of a flintstone vitamin cause it didn't do anything for the headache. Deep sigh...so....it was then into the back of an ambulance with my bro and down to Northwestern to an adult hospital for something more powerful. Still puking. Head splitting.

After all that, I could not imagine the day going any better. Matthew got his cells and now we wait. The directive now is to avoid infection and manage pain. By Day +10, we should start seeing his new bone marrow producing new cells. Stay tuned.

Day -1

2010-09-07T14:30:00.000-05:00

With guns blazing.

Here we go.

Day -2

2010-09-06T21:08:00.000-05:00

Claire visited Matthew today at the hospital. Most likely the last time she will see him for several weeks.

Day - 3

2010-09-05T21:43:00.000-05:00

Well, the speaking engagement met with some last minute modifications and I ended up speaking at 5:30 on the side stage. I think it still went pretty well even though I was pretty nervous. My apologies to anyone who went to the Clint Black show intending on seeing the talk. I only found out about the change about an hour beforehand.

In far more important news....Matthew is doing awesome. His energy level is off the charts, although they tell us that will change soon. He has a catheter now to prohibit the toxic byproduct of his current chemo from haning out in his bladder and causing irritation.

Add the following things together.

2 year old.
Hospital bed.
Lots of energy.
Catheter in penis.

It's not a pretty sight.

Last Fling

2010-09-02T22:16:00.000-05:00

This Sunday! Sunday!! Sunday!!! (say in monster truck announcer voice) I will be speaking at the Last Fling as a guest of the National Bone Marrow Registry. Not totally sure how this is going to go down but it looks like I will be taking the stage before Clint Black at around 8pm. I will be telling Matthew's story and encouraging others there to sign up for 'Be the Match'. If you are in the hood, swing on by.

Matthew is 3/4 done with his radiation with only 2 treatments left to go tomorrow. We went over to the Museum of Science and Industry this morning after his morning treatment and had a blast running roughshod over that place. I took some pics but they all turned out like garbage.

Awesome comments below. I am going to print them out and post them in Matthew's hospital room when he is moved to isolation.

Letter from Matthew

2010-08-31T22:57:00.002-05:00

Matthew asked me to pen this memo from him. He has developed a bit of a mouth on him so I had to clean it up a bit.

Team Matthew,
I had my first day of radiation today and am not sure what to expect. In many respects, its good that I am only 2 and I have yet to learn what is supposed to hurt and what isn't. My daddy calls me his hero. I don't think I am a hero. I am just an ordinary dude who happens to be doing something extraordinary. Not unlike many of you. If you do not know what I am talking about, you have have not been reading this blog very closely. There are countless examples of ordinary people, you, doing extraordinary things for me, my family, and eachother.

So, let's make a deal. I am going to keep fighting and kicking this cancer's ass, and you keep doing what you are doing. I know I can't do this without my team behind me.

Who's with me?

Matthew
Team Matthew Chairman of the Board

Respond by adding a comment below.

day - 10

2010-08-29T21:51:00.000-05:00

Here we go. It's day -10 (minus 10). Matthew is beginning radiation on Tuesday and will receive that 2x/day for 4 days. He will then be admitted to the hospital for 1 last round of chemotherapy before his stem cell transplant on Wednesday, September 8th. Matthew leaves tomorrow and he will be staying with either Nicole or I at Uncle Mikey and Aunt Jen's home in the city until his hospital stay on Friday.

We had a fantastic weekend together. We took the kids to '2 Toots' in Downers Grove on Friday for dinner. 2 Toots is this cool little diner type restaurant where they deliver your food to you on a train. Matthew went nutz. check out the vid.

Claire's first day of school

2010-08-27T16:27:00.001-05:00

Few things are better than the obligatory first day of school picture so here are a few. Today was Claire's first day of Kindergarten and the day was perfect.

bring it on!

w/dad

w/mommy

blowing us a kiss on her way in to school.

Headstrong

2010-08-23T21:09:00.001-05:00

Today began a weeklong series of tests for Matthew. The results of these tests will determine what types/levels of chemotherapy and radiation Matthew will need leading up to the stem cell transplant. Today, he was put under general anesthesia and underwent and MRI, CT Scan, bone marrow biopsy, and an Omayya tapping. All of this before noon. We received word this afternoon that the MRI looked great. So much so, that Matthew will no longer be undergoing cranial radiation (he will only have general / full body radiation). This is awesome news. Cranial radiation, to put it bluntly, is extremely nasty shit. Radiation in general is pretty horrific but to concentrate it on the brain is many times worse. Needless to say, we are very happy about this. The road from here his steep and it is great to not have to worry about this.

Back to work for me. Working a full time job while going through this is the best experience ever!!

Friends

2010-08-19T21:26:00.005-05:00

I'm generally not one of those people who looks at their life and wonders in amazement at how blessed and lucky they are. Maybe because of the seeminly endless "Well, that's just life' events that up constantly bite me in the ass. One thing I certainly do not take for granted is our friends and family. I know its trite. I also know you are one of the main things keeping the Furi's afloat right now. Recently, we (all of us is a rarity) had some opportunties to share some time with some of our friends. A great time.

Below are some pics of the Air and Water show which we watched from the Bottarelli's crib and also an impromptu motocross event that we hosted in our front yard with the Rosenbaum's.

Once a Knight is Never Enough

2010-08-13T15:33:00.002-05:00

My BIL Brad Rothman (call sign 'Dizzy') is a fighter pilot in the Marine Corp. Now, I know what your thinking...and you're right. By comparison your job is lame. Very much so. Don't try to kid yourself. It just is. Brad and the other guys in Marine Fighter Attack Squadron 314 autographed a poster of their plane, the F/A-18A Hornet, and sent it to Matthew from their base in Miramar, CA. This can go under the heading of 'Completely and totally awesome'.

home

2010-08-09T21:32:00.000-05:00

'nuff said

Furipalooza

2010-08-08T17:55:00.014-05:00

@ CMH we remain. I am not sure what it is about this stay that sucks any more than the rest but, it seems to. Save for the continually outstanding nursing care that Matthew (and Nicole and I from time to time) receives, the time away from home and having our family so disconnected is wearing on me. I did get a chance to run with Nicole today which almost never happens. Was awesome. Definitely confirmed what I was suspecting...that she could run circles around me.

This weeked was Lollapalooza in Chicago. I know you will all be happy for me for attending the second Lollapalooza 18 years ago. I am ashamed for telling people it was the first as I used to believe until I just looked it up. Turns out it was born in 1991. Anyway...as if anyone cares...The lineup was awesome then and still would be today. Red Hot Chili Peppers, Pear Jam, Icu Cube, Stone Temple Pilots. Its fairly easy to see why I was like the coolest kid in my high school. Yesterday, Matthew had his own music festival of sorts in his hospital room when he was visited by the music specialist at CMH. She was (and by all accounts still is) a very very nice woman. Matthew was having no part of it. When she started playing her guitar...he started screaming 'Get OUT!!!!'. Took his pillow and covered his face and was screaming 'NO NO NO'...all the while she is softly singing this 'Hello How are You' folky song. I guess he kind of answered that question. After a minute or two, the music specialist and I just started laughing about it and decided to try again at a later date.

Pic of the little guy helping out at the 4West main desk.
Thank you 4West nurses.

Mohawk Nation

2010-08-06T01:07:00.001-05:00

I am starting a new venture that is going to be a wholly owned subsidiary of Team Matthew called Mohawk Nation. I am not totally sure what the purpose is behind the aforementioned new organization but Team Matthew (you) has been so incredible, the spillage over into this new spin-off is bound to be kick-a$$. Maybe it will be the name of Matthew's new Monster Truck racing team. Perhaps it will be the name of Team Matthew's platinum cd. Perhaps it will be something I forget about and you never hear again. Time will tell.

I think we may have jinxed ourselves this morning. We were all set to go home when, out of nowhere...dude spikes a fever. Not a little fever. 105. Possible virus, similar to the one last month that sent him to the PICU twice. He has since come down and is back to his normal self but we will be sticking around CMH for a few more days.

Claire did get to come up to day and got to treat herself to some of her favorite CMH chicken tenders. MmmmMMmmm.

2 babes

I think this pic is from a couple of weeks ago but it cracks me up. His face is covered with what I can only guess is some sort of chewie residue and his hair isn't sure if it should be falling out or growing back.

Grave Digger!

I got a chance to get a short run in this morning. I would hazard a guess that the view on my run was probably better than the view on yours. Took these this morning. You can almost reach out and touch the 95% humidity. I

Light the Night

2010-08-04T09:16:00.003-05:00

My sister-in-law Amanda (BIL Richard's wife) is participating in the Light the Night event this year to benefit the Leukemia and Lymphoma Society. Her fundraising page is here. There are many reasons why kids are living longer and Leukemia is no longer a 'death sentence' (doctor's words not mine). IMHO, the research being done now and being funded by organizations like LLS and LRF is crucial.

Tina Fey, who I consider kind of a total hottie (not as much of a hottie as Nicole), is the national spokesperson.

In completely unrelated news...I have 48 voicemails that I have yet to check. If you are waiting for a call from me...you will most likely be waiting forever. gene.furibondo@gmail.com is the preferred method of communique. It's how Tina Fey gets a hold of me when she needs to.

and just like that

2010-08-03T21:46:00.000-05:00

Matthew is back in the hosp. admitted tonight due to potential infection. precautionary.

Despicable Gene

2010-08-03T11:40:00.000-05:00

Everyone is doing great and we have been making the most of the time together before late August hits and the world gets turned upside down again. Saturday, Claire and I went swimming at the Y which was awesome. On Sunday, Matthew and I kicked over to the model aircraft field by our house and sucked down a few packs of chewies while watching model aircraft guy do his thing. There were probably 30 model airplanes and the mood was pretty relaxed except for Matthew's screams and fist pumps when a plane would take off and land. Nicole and I also took Claire on Sunday to see Despicable Me in 3D. Overall, not a despicable movie...the 3D was cool and we got free popcorn. Definitely better than the movie described below.

Claire has gotten pretty good on her iPad...so much so that she can go into Netflix and queue up her own movies. As you can see from the email that I received below, this can have disasterous results. While I did not view the entire Care Bears flick, I did see enough of it to know that if the DVD suffered some horribly violent death, at least some other poor family may be saved from its dibilitating effects.

Matthew had a clinic appointment yesterday and got some platelettes which appear to have been badly needed as his legs are getting pretty badly bruised. That withstanding, he is completely crazy and has tons of energy.

I am putting together a Team Matthew soundtrack with some sweet beats. Hoping to get this together in the next week or so. Stay tuned.

7/30

2010-07-30T08:28:00.000-05:00

Quick update - all furibondo's are home and accounted for. Claire, interestingly enough, got a fever this week but Matthew stayed fever free, even though they would engage in the occasional lip kiss (Matthew is a strict "kissing on the lips" guy. Claire...not so much). Having the grandparents helping out this week has been a tremendous help.

With Nicole's encouragement (often in the form of knees and kicks in the back) I have started running again as a way to try to deal with the bone crushing anxiety. So far so good. In the absense of family photos, below is a shot I took of a dude who lapped me on the running trail (twice) This should give you some sense of my pace and overall level of physical fitness.

7/26

2010-07-26T22:09:00.000-05:00

Matthew was discharged this afternoon and came home to a hero's welcome and tons of hugs and kissed from Claire. They were so excited to see each other. Almost a week had past since the last time they had been together. We will be home for a bit until one of two things happens. Either Matthew gets a fever which is likely to happen or he stays fever free and remains home until we begin the stem cell process. The stem cell transplant process, as you have heard me, mention, is a long one. They refer to the day of the transplant as day 0. They days leading up to that are "minus" days and the days after are "plus" days. So the process officially begins on day -30 (minus thirty) and then its fairly scripted from then on. We have not gotten to that day yet. probably in another few weeks. in the 30 days leading up to the transplant are more rounds of chemo and radiation. He is looking good and by all indications feeling pretty well. I am tired and angry.

the lemonade girls - for real this time

2010-07-23T18:56:00.000-05:00

In my haste and because I'm a moron, I put the wrong picture of the Caroline and Grace in the last blog post. I corrected that caption and here is the real picture of the girls, with Nicole, who orchestrated the most awesome lemonade stand ever.

Team Matthew - Lemonade Stand

2010-07-23T16:28:00.001-05:00

Many of you came out to the Team Matthew lemonade stand last weekend in Downers Grove. I can't quite find the words to describe how incredible the support is for Team Matthew. We were thrilled at the response and so grateful to Caroline and Grace for putting on such an event. Here are a few pictures of the event.

Team Matthew lemonade stand superstars Emma and Colleen.

DG fire department

Claire's cousins Dana and Ben (white shirt is Ben and lime shirt is Dana) and their friends with Claire

The old man.

the iPad is hot!

2010-07-22T22:17:00.002-05:00

so much so, that scorching sales sent the Apple store up in flames tonight (not really). Claire and I grabbed our tandem rig and rolled into downtown naperville tonight to check out the goings ons and there was a false alarm at the Apple store. Was actually kind of sad watching the people leaving the store while the alarms were going off...except of course for those who were in line for the iphone4 who apparently would rather burn to a crisp than live one more day with their inferior 3g. After things settled down, the Naperville firemen hung out and let the little kids kick it in the fire engine for a bit. Was very cool of them. I was freaking out from excitement and said to Claire "Claire, let's go sit in the fire engine!!!" and she replied "Let's go play with the iPad instead." She won.

Nicole and I had a very good meeting with the doctor who is leading up Matthew's stem cell tranplant process. This was our second such meeting and we went over the plan. A few things stood out. The process is long and will require probably 3-4 months of Matthew living away from home, either at the hospital or in an apartment downtown with limited contact with people/places/things. The first 100 days are crucial. The risk of infection is high. The risk of rejection of the cells is high (see graft vs host disease). The side affects of radiation are painful to say the least. Our doctors are working with cancer/transplant specialists from around the country. This is not an exact science and there are still many unknowns regarding what is the best alternative in terms of the types of radiation/chemo. In the longer term, the radiation will cause Matthew to be in need of special assistance throughout his schooling, he will be unable to reproduce, he will have difficulty with reading and math, and other developmental delays. Things which frankly, at this point, Nicole and I do not even bat an eye at. We will do everything for him (For him, not To him) that we can to beat this POS disease.

Claire is starting Kindergarten in a few weeks and Nicole are I are both obviously worried about her and how she will process all of this. Starting kindergarten at a new school is going to be a huge event for her and I know I am not going to be as involved as I want to be. Not that she is not in good hands, she is. The Grand P's have been beyond awesome and have made this impossible situation liveable for the C-biscuit (claire). Like Matthew, I know she is a tough kid living through something I wish she didn't have to.

here we go again...and again

2010-07-21T22:14:00.001-05:00

yesterday was a bit of a sticky wicket (I am working with some guys from the UK and am working feverishly on adopting their lingo although I am convinced I am using it wrong) as we made 2 trips to the CMH emergency room. The first was for Matthew's fever and vomitting. After coming home for a bit, he got another fever and more vomitting so we were headed back in at about midnight at which time they decided to keep the little guy. Needless to say, I have no idea what day it is today.

Now for the good news. Matthew's tests have all come back and show no sign of leukemia. I like to receive good news now with a heavy dose of guarded optimism seeing that we've been down this road before. Irregardless, its a huge step and important precursor to going to stem cell transplant. We are starting another round of chemo tomorrow and should be in the hospital for about another week to 10 days. After that, its hopefully back home for a few weeks before the transplant process begins.

In unrelated news, we were fortunate enough to get family pictures taken by Todd Pierson over the weekend. On our best day, the Furibondo's would be considered a challenge to photograph...and saturday was not our best day. Todd found a way to make it work and far exceeded my expectations. With one exception. I had asked Todd to airbrush about 20lb's off my ever expanding torso. As you can see from the photos, it is fairly evident he added a few inches instead of deleting them. You can view the photos here.

The weekend

2010-07-18T22:36:00.002-05:00

Matthew has a big day tomorrow of tests tomorrow (MRI, CT, Bone Marrow) which should tell us something about what the next few weeks are going to look like. Had a great weekend with everyone at home. Pics below.

super cutenesses watching tv. If I had to guess, I would go with either Cyberchase or the Grave Digger video.

Team Matthew Lemonade Stand- Captain's jersey

Making up for a few weeks of missed chores

Matthew getting medicine. Claire helping.

Nerds

The view on top of the Children's Memorial Hosp parking garage

7/13

2010-07-13T22:07:00.001-05:00

Wanted to give everyone a quick update. Things at home are going well. It was nice yesterday to go to work and when asked "how was your weekend?", I didn't have to lie and say it was good. Cause it actually WAS good. Matthew, although weak and clumsy, is loving being able to play with his cars and copy Claire with everything she does.

Reminder, this Thursday - Sunday is perhaps the most kick-a$$ lemonade stand you will ever have the opportunity of visiting. A couple of Nicole's former students are hosting a lemonade stand in Downers Grove in Matthew's honor. Details can be found here. The word on the street is that local celebs and socialites will be dropping in. Proceeds will go to the Leukemia Research Foundation.

the eagle has landed

2010-07-10T12:03:00.000-05:00

we arrived home late last night and after our 1am visit by our home health nurse, we were off to bed. Felt great to have the 4 bondo's under one roof for the first time in a month.

holy shmoly

2010-07-09T09:14:00.001-05:00

Guess who might be going home today. I will give you a hint. It's Matthew. Give up? You're not very good at this game. Its Matthew! over the past 48 hours, Matthew has seen a great improvement overall. His eyes are open. He is out of his tent. He is screaming (good screaming) at the Grave Digger video. He is giggling at Shaun the Sheep. His PICC line is back in after he pulled it out the night before last. He is going to be spending a decent amount of time in the hospital over the next month couple of months that the docs think a stint at home would be beneficial. I agree. ((If this machine next to me beeps one more time someone will be picking the f'ing thing up in pieces off of Fullerton avenue.)) He is still on several medications, a couple of which are for pain management. Going home while on these is a tricky proposition. The doctors are currently working on finding a workable solution to this. If they can, we can go home. If they can't, its not a huge deal...we just stick around for a few more days while we try to ween him off. We spoke yesterday about whether to ween him off here at that hospital or at home. If at home, will a nurse help us ween him? My question yesterday was "Will there be somebody dedicated to managing his ween?". <>. Not even a chuckle.

The debate has begun over what caused this nice turnaround in Matthew's behavior. His pain meds were increased. He had spinal fluid removed through is Ommaya to relieve pressure. Finally, there was a natural healer from the hospital who came by. She harnessed the power of the earth and applied that power to Matthew. I also got a treatment and regretfully am the same idiot I was before the treatment but it seemed to do the trick for the little packster. You probably will not find a more skeptical person on the planet but...I am right now looking into my insurance documentation to see if there are any exclusions regarding the earth's power and if that applies towards my giganto deductible.

Live today like it's a gift

2010-07-06T19:20:00.004-05:00

Lemonade Stand for Team Matthew - Triblocal - Voice of the town

2010-07-06T11:58:00.001-05:00

Potentially one of the coolest things I have ever heard.

Lemonade Stand for Team Matthew - Triblocal - Voice of the town

Some of Nicole's former students are hosting a lemonade stand in Downers Grove to raise money for Leukemia research.

7/15 thru 7/18
Noon - 6pm

4508 Douglas Road
Downers Grove, IL

Additional information can be found at the link above.

There are many stories like this of people doing things for us and to raise funds for cancer research.

7/6

2010-07-06T07:17:00.000-05:00

Not much to report other than Matthew is doing about the same. no fever although he is still very photosensitive. The increase in the pain medication has seemed to work at allowing him to rest somewhat comfortably. looks like he will be getting a follow-up MRI today to check out his brain and gauge the effectiveness of the chemotherapy.

I am pretty damn tired.

ribs

2010-07-02T19:08:00.000-05:00

its ribfest time again which can only mean spending 60 dollars on ribs that would normally cost you 14 dollars anywhere else. however the ambience of sitting in bbq sauce soaked grass (i meant that to sound kind of gross but the more I think of it the more it sounds kind of delicious) and watching claire smother ribs on her grill is pretty much worth any price.

Packy is doing about the same. We haven't seen much change over the past few days which is sort of frustrating. Still very tired, very sensitive to light, and not eating much. He has setup camp (literally) with his new tent which has helped him significantly.

fever

2010-07-01T09:33:00.000-05:00

Matthew has been getting little fevers lately with his latest hitting 101.2. He is noticably uncomfortable and did not sleep much last night. I wish he could tell me what hurt. His eyes seem to be very sensitive to any light and he generally hangs out with his nunu covering his face. While we were up last night, he asked me to take a memo for him. Went something like this.

Dear Cancer,
Go to Hell.
Sincerely,
Matthew Furibondo
PS. I hate you.

Nemo

2010-06-30T11:40:00.003-05:00

Claire has been logging some good swimming time this summer and getting water logged in the process.

tummy hurts

2010-06-29T14:30:00.000-05:00

Lots of pain last night and today for the little guy. The infection is gone but it left a lot of damage. It is taking much longer than usual to heal the damage due to the chemotherapy and the elimination of the blood cells that usually do the healing. The pain meds have been boosted and he is able to rest more comfortably. Last night, I think he had it with me asking him what hurts. After I asked him for probably the 1000th time he opened his eyes, stared at me, and screamed 'MY! TUMMY! HURTS!' as if to say 'now please, shut the hell up and stop asking me'.

Today or tomorrow is Dr. Colleen Morrison's last day in Children's Memorial HEM/ONC department (she is moonlighting for a while in the ER). Nicole and I are incredibly excited for Dr. Morrison as she has accepted a position closer to her family that will allow her to spend more time with her little cutie who is just a week older/younger than Matthew. Over the past 7 months, she has been an integral part of Matthew's treatment and has also become a close friend. Although she may feel as if its part of her job, her caring and compassion has had an immeasurable impact on Matthew's health and her imprint on my family will be permanent. In a situation where there is often nothing she can do or say to make things better (aside from feeling Matthew's testicles..I cannot say with certainty that this did not make him feel better), it has been comforting knowing that she is caring for Matthew. She is a wonderful person and a talented doctor and she will be dearly missed.

Also, here is the page I mentioned earlier for our friend, Jenn Rachmiel. She is running the Chicago Marathon for the Leukemia Society. Please pass along the link to anyone you feel may be interested in contributing to this cause.

Day 15

2010-06-27T21:25:00.001-05:00

15 days matches our longest stay at Children's Memorial which was when the dude was first diagnosed. Matthew is out of the PICU as of this afternoon and able to drink some clear liquids again which he is loving. Biggest smile from him today was when he saw his mommy. Biggest smile from me today was also when I saw his mommy.

picu

2010-06-26T21:13:00.001-05:00

Matthew was moved to the PICU last night for observation as his blood pressure had dropped and his fever remained fairly constant. Since then, his blood pressure has returned to normal and he has been fever free since this morning. He is still battling a very nasty blood infection and has been for the past several days. The nights are sleepless. He is in considerable pain and we are giving every pain medication we can as often as we can to try to make him comfortable. This afternoon, he did start to calm down and he has also napped for a couple of hours straight which is a huge improvement. He had a tube put into his nose and down to his stomach for suction. There was indication of a blockage of some sort that the suction was going to help alleviate. As his vocabulary is limited, it is difficult for him to tell you what hurts. He cannot eat or drink anything and is all he says is 'tummy hurts', 'water', and 'chocolate milk' (pronounced 'chalk-it milk'). I tend to joke around but it is the most hellish and unbearable experience imaginable. The exhaustion, anger, frustration, confusion will (not can...will) wear you down. The support from everyone has been awesome and we need it now more than ever.

Just learned that a friend of ours is running the chicago marathon for the leukemia society. Other friends of ours also have been involved in activites for leukemia awareness. I know with a great deal of certainty that matthew would not be alive without this research. I do not think I mentioned this before but the reason that there is little data regarding matthew's current relapse is that until recent advancements, kids simply did not live this long. They are seeing more cases like matthew's because more and more kids are living longer and longer as the treatements for leukemia improve. I am sure there is a fundraising component for her marathon training and will post that info when I get it.

Matthew and Claire's new ipad arrived with little fanfare. I am surprised at the amount of time I have had to devote to ~~playing with~~ configuring it to maximize their educational experience.

new donor

2010-06-25T08:06:00.001-05:00

Yesterday started awfully weird and got progressively weirder as the day went on. allow me to briefly break it down for you. I was working out of my Naperville office (aka the naperville public library) and was on a conference call with some work folks. I received the below email.

So that's weird, right? that I would be asked to be a bone marrow donor for a 2 year old little boy? given...you know...that I also have a 2 year old little boy who is looking for a donor? So I call up Rose (from the email) and tell her that I am very willing and very able to be a donor for whomever needs it. I then explain to her that this is kind of strange and explain matthew's situation. She seemed a little confused and wanted to call me back, which she did about 2 minutes later. She wanted to know which hospital Matthew was at. She called back again and let me know that I was no longer being considered as a donor for this patient and thanked me for my time. Due to all sorts of privacy crap, they really can't reveal anything, although she did encourage me to talk to Matthew's doctor and let her know that I was contacted.

I forwarded the email to Nicole who was sitting at the hospital with our doctor. They were discussing how a new donor popped up on their system this morning. Turns out a 35 year old male has also been found. It also turns out that the 35 year old male is me. I match Matthew on 7/8 proteins and the fact that we are related is a big plus. The fact that I am remarkably handsome and witty is also a big plus but not as big as being Matthew's dad. Matthew faced an uphill battle having me as a dad to begin with but now with a double dose of me, he certainly is in for it.

Matthew is still in isolation and has a bacterial blood infection for which he is receiving several antibiotics. Infections such as these are unfortunately common in chemo patients, although Matthew has been lucky to not have one until now. Although we think we caught it fast enough, the little man appears to be in a lot of pain and discomfort and he did not sleep a single minute last night. We are trying everything thing to help him get comfortable.

6/22

2010-06-22T18:31:00.002-05:00

Matthew received a kick a$$ fire engine yesterday after asking for one ALL day. This one has a fully funtional hose and as you an see in the picture, is capable of pretty good soaking action. I am completely unbiased and I can say it is prob one of the cuter pictures you will ever see.

We are going to stick around for another night since our MRI was rescheduled to late in the day today and we are coming back tomorrow to check various levels. We did receive encouraging news that the spinal fluid has shown a significant decrease in leukemia cells. I no longer get really excited about hearing good news as I have been on that roller coaster before but this is cause for some muted optimism.

Not today

2010-06-21T20:09:00.001-05:00

We had some high hopes of going home today but, alas, Matthew is sticking around for another night (at least). He is scheduled for a spinal MRI first thing in the morning to potentially identify if there is anything that is making it painful for him to walk. He received his second dose of local chemotherapy today via his Ommaya reservoir and proceded to throw up all over the place and then had a complete blow out of his diaper. I was able to cuddle with him for a bit this afternoon which made my day.

I think I may put together a non-santioned unofficial welcome guide for new guests of 4 West. Would contain helpful information such as which buttons are ok to press and which buttons are not ok to press. Here are the only buttons I am allowed to press..

HFD and the Baptism

2010-06-20T16:24:00.002-05:00

First and foremost, happy father's day, especially to my dad and my father in law. Also to uncles, cousins, and friends who may not have children of their own but still have an unfillable role in our children's lives. A couple of years ago I received a '#1 Dad' picture frame which means that the top spot is taken but I am sure there are a few of you worthy of the second spot.

Yesterday we had Matthew baptised which went very well. A friend of both the Furibondo and the Kobal families, Deacon Jim, did the honors and everything went perfect.

transplant

2010-06-18T23:02:00.001-05:00

Matthew is becoming more and more alert and is staying awake for hours at a time now. He is also eating (donuts mostly) although continues to suffer from some nausea. His words, once very clear and loud, are now the softest whispers and are difficult to understand. He looks better each day although still cannot sit up or stand without pain. This round of systemic (through his PICC) chemo is done on Sunday and he will get localized chemo via his Ommaya on Monday at which point we will see if he is good enough to go home.

I see you.

Matthew could not bear to watch the USA world cup game. Either because the match was very close or because soccer is brutally boring to watch .

In other and substantially more depressing news, Nicole and I met with a doctor from the stem cell transplant team today. Upsetting is not the right word. Matthew has so many things working against him and it seems like each the road gets steeper and steeper. A search was conducted on the National Bone Marrow registry to find a donor for Matthew. Some kids will have 10+ perfect matches. Matthew has 1 "acceptable" match meaning that the donor matches on 7 out of 8 critical proteins but is less than optimal. There are several characteristics not working in our favor. it is a woman (-1) who has had 3 kids (-1) and is older (-1). There are also 2 possible cord blood bank donor sources but cord blood transplants have some different risks than live adult transplant. Perhaps the most difficult thing was listening to the affects of the radiation which I wont go into. It is a nightmare. Do not mistake this for losing hope we aren't/cant/wont/ but the possibility of Nicole and I having to make a decision between continuing painful and unlikely treatment vs providing Matthew with a quality of life he deserves is becoming real and it makes me feel (i sat here for a while but can't find the words to describe it).

Three Monkeys

Our loves

6/16

2010-06-16T22:45:00.002-05:00

Nicole and I want to thank everyone for the thoughts/prayers and hopeful wishes.

Matthew is doing better today than he was yesterday. He is still not talking and moving seems to be very painful for him but he stays awake for up to an hour at a time and seems to enjoy the Phineas and Ferb episodes on Disney. Actually it is more me who is enjoying the P and F and he just tolerates my giggling. He also enjoys me kissing his face although he will not smile or laugh like he once would. He did eat about a dozen donut holes (glazed) and consumed them as if there was some sort of donut hole bugler on the loose. He barely moves until the donut is within reach and then he grabs it and shoves the entire thing into his mouth and commences the chewing process. All that's left afterward are remnants of glaze on his shirtless chest that were lucky enough to escape the carnage.

Claire came up to the hospital today and got to visit with Matthew which she loved. She misses him so much and was so excited to spend time with him. I know seeing him must have been tough for her. I have a pic but I am lacking the motivation to get off this chair.

I cannot describe the feeling that Nicole and I are feeling right now. Waiting 2 weeks to get some indication whether this is going to work is gut wrenching. We are feeling like we are crawling out of our skin and constantly want to vomit. The staff here at CMH has become like family to us and they care for Matthew as if he was their own. I will try to get some more pics tomorrow. Here is one from the Bott's blog.

Here is another one of my favorites from a while ago. Matthew's smile is priceless.

heartbreaking

2010-06-14T21:48:00.001-05:00

This post may be short. we'll see which runs out first. My patience or this shitty internet connection. Both are at dangerously low levels.

Matthew is doing as well as can be expected. He had an MRI this morning and this evening had a bone marrow also had a port installed in his head. The bandage used matches his slippers. The purpose of the bad ass slippers and bandage is to basicly instill a sense of fear into the other sick kids through intimidation and otherwise unruliness. In all seriousness, he looks hilarious in them and he loves them and they are kind of kick ass looking.

I am not going to get into specifics here other than to say that there is very little history to go on given what is happening to Matthew. The odds of recovery are low. He needs a stem cell transplant. That is an absolute 100% certainty. But to get there, he needs to first get into remission. We are running out of drugs to try to accomplish that. We have a few more weapons to try and we're not giving up. Nicole is amazing and the way she advocates for Matthew is unreal...even for a mom. Claire does not know what is happening at this point. She is going to be crushed. She loves her little brudder so much and recently revealed to Nicole that she wanted to marry Matthew.

I waited 6 seconds for the photos to upload but they didn't so I gave up. I will post them tomorrow.

updated 4:25 am....

Matthew's Ommaya reservoir

Matthew's slippers

In the PICU

Devastated.

2010-06-13T21:56:00.000-05:00

I am not even sure what to write at this point but Matthew's leukemia has returned. If there was a worst case scenario, this is it. A large number of brain lesions were discovered on Matthew's brain during a precautionary CT scan today. I can barely type this as my fingers are numb and if it turns into an obscenity laced tirade, well so be it.

For the past few days, Matthew has been feeling very lathargic and has also been nauseous. After one trip to the ER yesterday and concerned with the lack of improvement last night, we talked to the oncologist at CMH and came in. The rest has been like getting sucker punched in the gut. This was supposed to an f'ing virus, which btw, whenever there is some sort of illness that can't be explained, its always called an f'ing virus.

Tomorrow morning, we have an MRI and a bone marrow to try to confirm the diagnosis after which, we will develop a plan of attack. This is going to be an incredibly difficult fight. Against much greater odds than the first. If you are owed any miracles, now is the time to cash them in.

A perfect day

2010-06-05T12:40:00.000-05:00

"You can't live a perfect day without doing something for someone who will never be able to repay you." - John Wooden

Ssadly, the hall of fame and long-time UCLA basketball coach passed away yesterday. In reading a little bit about him I came across this quote from him which I really liked. Especially because so many people have done so much for Nicole and I...more than we could ever repay.

We met them in St. Louis

2010-06-01T10:46:00.001-05:00

This past weekend was my sister Mary's wedding to her new husband Doug. It was an awesome time and it was great seeing all of my relatives who we rarely get to see. My sister looked beautiful and was nearly equaled in beauty by Claire.

Nicole, Claire, and Matthew have also been busy watching their caterpillars turn in to butterflies. A few days ago they let them free, presumably to be quickly eaten by birds or lizards.

--insert twilighty zone type music here--

2010-05-25T10:42:00.002-05:00

in perhaps one of the weirder twists of fate ever, our insurance provider, Humana, decided to reverse Matthew's pre-existing condition decision and will start paying his medical claims. During my daily interweb verification of my financial demise, I noticed that Humana had claimed to have paid about 190K worth of the over 600K of outstanding medical bills. This seemed very strange as they had previously said all bills related to Matthew's leukemia were going to be denied. The dude on the phone said they had further reviewed the case internally and had decided to reverse their decision. Perhaps they got wind of the legal team I had put together which included the likes of Johnny Cochran, Abraham Lincoln, pre-scientologist Tom Cruise in a Few Good Men, and Matlock. In all sincerity, my buddy Josh in Elmhurst did provide a great deal of guidance and time in reviewing the facts around this whole mess. My only conclusion after becoming semi-intimate with Illinois' insurance law is that the entire healthcare/insurance system needs a bomb dropped on it and should be rebuilt from scratch. You would be hard pressed to find anything remotely more f'ed up than this.

Matthew: 1 Cancer: 0

2010-05-21T12:04:00.001-05:00

The results from last weeks bone marrow biopsy have revealed zero cancer cells. This is best scenario we could have hoped for. He is feeling great and has more energy than the rest of the family combined. In fact, he is going to make an unscheduled special guest appearance at his Aunt Mary's wedding next weekend. Aunt Mary does not know this yet, nor does anyone else for that matter. :)

In completely unrelated news...my brother Mike and I were kicking it in our usual celebrity laced social circles this week. Here is a photo of us rolling with Michigan State head basketball coach Tom Izzo.

The Graduate and Civil War Days

2010-05-18T21:57:00.002-05:00

Some recent pictures of the last few days. Yesterday was Claire's graduation from pre-school which was a terrifically awesome event. Claire and her fellow alumni sang songs and celebrated their graduation from Happy Times Preschool. Claire has loved going to Happy Times and has better teachers than we could have wished ever for.

Claire and Miss Sherri

Elise, Claire, and Julia

Claire with her Grandparents!!

This gem is of Matthew sitting on his new toilet in the hallway wearing Claire's shoes. Complete with reading material.

On our way to the Civil War Days. You can almost see Matthew concentrating on finding a way to make this trip blow up faster than a confederate musket.

My BIL Anton joined us.

Civil war reenactor is an interesting breed of person.

The South won this battle although we were ensured that the next day they would not be so fortunate.

Wanted: Erin Brockovich

2010-05-13T09:24:00.005-05:00

**I have been informed that the lawyer movie I was actually thinking of is the Rainmaker and not Erin Brockovich. I hate to disrespect a Julia Roberts so I will keep the original blog title and hang my head in shame at the incorrect movie reference**

Its been a few days since my last post due to general busy-ness and enjoying everyone being home for the first extended period of time in a while. Since we last spoke a few things have happened including Matthew's last bone marrow, my nearly murdering a women in downtown naperville, and our insurance company screwing us. I will dive into each of these a little further for your enjoyment.

First and foremost, Matthew had what is expected to be his last bone marrow biopsy EVER yesterday. He did awesome. The results of this test should be back in about a week or so. His counts are recovering nicely and he has ALOT of energy. He loves being home, spending time outside, and playing with Claire.

I took Matthew for a walk last Saturday in downtown Naperville. It was a little chilly but his head is starting to grow hair again and it very itchy. I tried to put a hat on him but he kept pulling it off. We were standing in front of Starbucks and a woman in the passenger seat of a red prius stuck her head out her window and said "put a hat on your baby". I turned around to look at her, kind of confused. She said again "put a hat on your baby", and then she drove away. I was stunned and eventually, so completely pissed off. Matthew and I spent the next 30 minutes or so walking around downtown Naperville looking for this Bit$h but could not find her. A nice dude who works at Marbles came up to me and said that he heard what she said and could not believe it. I eventually calmed down after finding solace in the fact that this woman may be lying dead in a ditch somewhere or will somehow, and very painfully, learn a lesson to keep her fing mouth shut.

Finally, I started looking through some of Matthew's open insurance claims (totalling just short of $600,000 so far) and noticed that some had been Denied due to the existence of a pre-existing condition. I won't get into the long story but when I started my own company, our insurance company changed effective on 12/1. Matthew went into the hospital on the night of 12/1, at which time we had never heard the word leukemia nor had cancer ever been discussed. He was admitted the early morning of 12/2 and was eventually diagnosed on 12/4. Humana is calling that a pre-existing condition based on the symptomps that he was showing in November. So now the appeal and presumably legal process begins. Exactly what I feel like doing right now.

Do I have a sign on my back that says "Kick Me...as hard as you can...repeatedly...in the nuts!!!"? I must.

@home

2010-05-05T21:11:00.000-05:00

The bacterial infection was believed to be in Matthew's PICC line so this afternoon, they took it out and sent us home. His ANC continues to recover (over 500 now) and his recovery looks to be on track.

bacteria

2010-05-05T09:50:00.000-05:00

the bacteria infection is confirmed and he is on antibiotics designed to kill it. Unsure currently of the seriousness. Will probably be in the hospital for a few more days.