7/30

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

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

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

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!

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

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

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

Nerds

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

7/13

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

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

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

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

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

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

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

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.