We met them in St. Louis

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.

Wanted: Erin Brockovich

**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

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

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. 

- - insert deep sigh here (not the good kind of deep sigh...the frustrated one)- -

so...the little dude is home but we have a new late breaking development.  the doctor called late last night and said that something had started growing in one of matthew's latest blood cultures. from the looks of the bacteria, it appears to be something that would be topical so the thought is the blood sample was somehow contaminated. He is staying home but being put on a short term antibiotic while a new blood culture is taken.  aside from being crabby, he is acting normal otherwise.

tired

Matthew should be going home tomorrow (monday) barring some sort of unforseen problems.  His ANC level, which is kind of the magic number we monitor, has gone from zero, to 23, to 68, to 98 over the past 3 days which is great.  Normal values are above 1,500 but we have to start somewhere.  He got a blood transfusion and platelets today which really boosted his energy level this afternoon. 

isolation

Matthew is still in isolation but seems to be doing a little better than he was at this time yesterday.  Isolation is where you are in your own room (good) but you are confined there and can't leave (not so good).  As soon as the doctors get the results of a few tests indicating he does not have anything dangerously contageous, he will be moved out to a regular room.  He had a fever up until last night and was fever free for all of yesterday and so far this evening which is a good sign.  He is on a steady cocktail of several different antibiotics which are designed to combat pretty much anything that is causing him this discomfort.  He wasn't eating anything really up until this morning when he was able to muscle his way through a few donut holes and then it was encouraging this evening when he at his mac n cheese by sticking his foot in the bowl and then eating the noodles off of his foot.  Difficult to say how long stay will be but getting through this recovery period should be the last hurdle. 

last visit?

Matthew is still in the hospital and probably will be until Monday.  We are hoping he is able to go home then so he can be home for his birthday on Tuesday.  This should be his last admission if everything goes as expected.  Today was a long day.  The poor little man fell in the tub and got a big bump on his head.   

spring fever

mdogg got a fever today of between 100 and 101 so he is enroute to cmh as we speak.  He hadn't been feeling well and was up for part of the night complaining of an upset tummy.  Once there it will probably be blood tests to see if there is any bacteria growing and most likely another antibiotic.  This is not entirely unexpected since his last round of chemo was some very nasty stuff and follow up visits like this are quite common.

Platelets, stat!

The tidbit for the day...the term 'stat' is short for the latin word'Statim', meaning immediately.   Duder is very low on platelets this week so Matthew is headed into CMH for a little platelet recharge today.  A normal person's platelet level is somewhere in the neighborhood of 150 - 450 x 109/L.  Matthew's is around 11.  You could tell this morning he seemed a little off when we went in to get him and he did not have one leg draped over the side of his crib and halfway through his escape plan. 

Packy is home!

Today was it...the last day of chemo...hopefully forever.  Aside from picking at the sore on his head and a hurting super small tushy, the little dude is doing great and is very happy to be home.

So now what?  We will wait for a month or so for his counts to recover.  At that time, he will have a bone marrow/spinal tap/etc to scan his cells for any trace of leukemia.  He will be on an anti-biotic and anti-fungal medication for the next 6 months or so while his immune system gets back on track.

Hard to believe

Difficult to believe this is the last round of chemo for the little dude.  Here is a picture of the whiteboard in our room with a message greeting matthew. 

That was written by Janelle, one of our favorite nurses.  I can't say enough about the nurses and care staff at CMH.  I intentionally left the billing and collections department out of this group.  Matthew woke up this morning doing great.  He is rooming with his buddy Noah who Matthew likes to talk to and generally cause trouble with.  The nurses refer to their room as the 'cute room' for obvious reasons. 

I will have to Noodle that around for a bit...

Our Noodles night scheduled for 4/14 has been postponed for a bit.  Stay tuned for further details.

update

sorry for my lax updates over the past few days.  Matthew came home on Friday and has been doing ok since.   A few ups and downs in terms of his mood and energy level but overall doing well.  He is back at CMH on Wednesday to receive his final 3 days worth of chemo. 

Last Round

Matthew is ready to go for his last round of chemo although his counts have still not recovered.  The doctors did not want to wait any longer and since they have somewhere around 8 more years of medical school than I have, its their call.  He is admitted and will be in for the next three days.  Hoping that he can dig down and punch this round in the face the way he has done previously. 

Arizona Distance Classic

A good friend of mine, her son, and her son's friend took the Team Matthew support out to the west coast and ran in the Arizona Distance Classic in Phoenix, AZ. The Arizona Distance Classic is a half Marathon benefiting the Leukemia and Lymphoma Society.  They were also interviewed by the local news in their Team Matthew gear on their way to the starting line. 

Watch the video by clicking here.  Pay close attention around the 25 second mark.

u-turn

Matthew, after sneezing out more carrot, is being sent home from the hospital today.  His counts dropped a little bit so it looks like we will start the final round next week.

Numbers

Matthew has been doing very well and had a great weekend although his appetite is still pretty weak compared to what it used to be.  His sister recently introduced him to carrots dipped in ranch which he loves.  Actually, it is just the ranch that he loves.  He licks the ranch off of the carrot and then discards the carrot before taking a new one.  Except for this morning when he took a carrot with ranch and stuck it up his nose.  It took a sneeze to get it dislodged. We are also missing a blue crayon that seems to have disappeared. 

His latest cbc (complete blood count) taken this morning revealed that his counts are back up so he will be going back to CMH on Wednesday to begin round 5.  We were kind of hoping to have another week of him home.  This upcoming round is the final round of chemo for Matthew and allegedly, also the strongest.  Unlike his prior rounds which have been over consecutive days, this round has a few day break in the middle assuming he is feeling ok to go home.  He is scheduled to be in for 3 days, home for a few days, then back in for another 3 days.  Until then, he will be attending the nu-nu festival with big sis Claire (left)

What the @#$%&?

What was looking like a perfectly fine evening where I was going to get a little bit of reading in, very quickly turned into a very long and messy night.  It started with an innocent enough rash on his arm.  Nothing to be alarmed about...it happens all the time.  A little while later, he rolled over onto his side and thew up phlegm all over the place.  That is a little bit of a bigger deal, but still, it happens sometimes and we move on.  After gettting some new bedding, we took his temperature and he was @ 94 degrees (98.6 = normal).  Apparently a low temperature can mean the same things as a high fever.  You can think of it like a Toyota with its accelerated stuck.  The body thinks it is doing something different than what is actually happening (try finding that analogy in JAMA).  We packed his little body with hot packs and stayed up late.  The last thing I remember is watching Handy Manny reruns on the laptop.  Handy Manny is digestible but not my first choice.  Phineas and Ferb is the gold standard when it comes to adult tolerable children's television.  I talked to Nicole this morning about taking him home today as scheduled.  We have kind of learned that the simple act of asking that question (Should we go home today?) is indication enough that he needs to remain in the hospital for a little bit longer.  Matthew has an enormously strong spirit and an admirable fortitude.  So much  that it is sometimes easy to forget how sick the little man is.

Round 4

Matthew is back in the hospital and is already on day 2 of his chemo treatments.  This round is expected to last 8 days.  So far, everything is going well and he is feeling pretty well by all indications.  We are trying out a new idea which is using a high chair for Matthew to eat in.  It should make it more difficult for him to dip his chicken tenders in ketchup, then peanut butter, and then wipe it all over his socks and pillows.