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.

Children's Memorial Telethon

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

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Day +1

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

With guns blazing.

Here we go.

Day -2

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

Day - 3

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

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.