Claire! Miss you!!

A couple of nights ago Matthew and I, from the hospital bed, Skyped Nicole and Claire while they were at home.  Matthew saw Claire on the computer and kept saying 'Hi Claire!  Miss you!  Miss you Claire!"  It was very funny.  He would then grab the computer screen and try to kiss it over and over.

A few more pics of the little man painting.

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. 

Matthew turns 2

Thought we would try the video route for Matthew's birthday.  The funniest parts are probably at the 34 second point when matthew appears to be thinking to himself and says "hmm.  Candles!" and then at the end when Claire is making some sort of weird faces.  To view the video you have to first agree not to judge us as parents when Matthew starts waving his hands through the candle flame. 

dangerously cute

After a great day yesterday (pics to come), Matthew is back at the hospital today.  Still waiting to see if he will be admitted.  Odds are he will be since he has a fever.  He is also in noticeable pain and was up with Nicole for a while last night complaining of an upset stomach. 

**update** the dude has been admitted and is kicking back in isolation.  Preliminary tests are negative.  Negative in this case is good.

In happier news, view these pictures with caution as the two dudes in the photos are handsome little devils. Matthew was recently rooming with his home-boy Noah.  Noah's mom got some great pictures of them hanging out.  Only because I have spent countless hours with them am I able to offer the following translations.

Come here and give me a smooch!

I once ate a donut that was THIS big.

Check out my fly dance moves!!

Pull my finger.

hugs all around

It was hugs all around when Matthew came home this afternoon.  I think his being released from the hospital probably had more to do with him being restless and bouncing his head off of everything than him actually being ready to come home.  His counts are still extremely low but it is great to have the little dude home and in time for his birthday tomorrow.  Caught a few pics of him and Claire as they were outside this afternoon enjoying some of the nice weather.  The picture below pretty much sums it up.

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)

back at home

Matthew is back home today after a few nights at the hospital.  He is on a new antibiotic that, although is offered as an oral medication, is undigestable by anyone with taste buds.  It is nasty %$#@.  So we have these little hand grenade looking things that have medicine in them and we hook them up to his tubies and let it go for 30 minutes.  They are pressurized and they slowly compact and push the medicine through.  It is surprisingly easy. 

Benadryl

Siesta

Breakfast

Syrup

March madness

Fever today so we are admitted. 

Hopefully for not more than a few days.

3/16

The month-long festivities devoted Claire's birthday are coming to an end and she had a blast spending time with many of her friends.  Yesterday, Matthew and I spent the day at Edward Hospital due to some crazy bruising and nausea.  We got some platelets, watched 3 movies (first was Bolt due to Rhino being one of the greatest characters on the big screen, Madagascar 2 which both Matthew and I felt was forgettable, and Monsters vs Aliens which, when paired with platelets and fish crackers, is entertaining) , and were home by bed time. 

Here are some pics from the last couple of weeks. 

Claire turns 5

Claire, along with Nicole and her Aunt Jen, went to the American Girl Doll store on Michigan Avenue last Saturday to celebrate Claire's 5th birthday.  To say that Claire was excited was a slight understatement and she had a great time.  She even got to pick out her own doll; Kitt Kittredge.  Here are some of the photos of their day and the delicious fun-fetti cake we enjoyed afterwords.  There is one picture where it looks like Claire's hair is about to catch on fire.   I am happy to report it did not.

@ home

little duder is home and happily eating soup

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.

Quick update

Quick update on the mdogg.  He is almost a done with round 4 and is doing very well.  For the last few days, his chemo has been blue and we were warned that it could turn his urine and the whites of his eyes blue.  Def blue urine.  Not so much on the eyes yet.  I hope to have some more photos soon and also of Claire's birthday which was yesterday.

Want to say a special and continued thanks to the staff and nurses of 4 West at Children's Memorial Hospital in Chicago.  They care incredibly for Matthew and I am grateful for them.

2000 Visitors!!

The Furi-Blog just enjoyed its 2,000th visitor since I started keeping track in late January using Google Analytics.  469 unique people from 30 states and 10 countries (including Australia, Iraq, and Taiwan). 

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.

March 3rd

For Meghan Rose who we love and miss...

How Very Softly you tiptoed into my world.

Almost silenty, only for a moment you stayed.

But what an imprint your footsteps have left upon my heart.

-Dorothy Ferguson

The mission of Share Pregnancy and Infant Loss Support is to serve those whose lives are touched by the tragic death of a baby through early pregnancy loss, stillbirth, or in the first few months of life.

Whose blood was that?

Ever since Matthew's blood transfusion on Wednesday, he has been a little crazy dude, operating at 100 mph and getting into EVERYTHING...especially Claire's business.   My speculation is that the blood he received was donated by someone with a sever case of attention deficit hyperactivity disorder.  Irregardless, Matthew is loving every minute of it and is terrorizing the house and all who occupy it...as any 22 month old should.  Matthew's counts seem to be going up as we would expect.  Our oncologist thinks that we will be starting our next round this Wednesday.  This next round is 7 days long and is also the next-to-last round for the little duder.

Beads of Courage

I wanted to show everyone Matthew's Beads of Courage that he is accumulating.  Beads of Courage is a pretty cool program aimed at helping children with serious illnesses.  Each bead has a different meaning or milestone related to a child's treatment.  For example, a white bead symbolizes 1 dose of Chemotherapy.  A blue bead represents a clinic visit at the day hospital.  A Red bead indicates a blood transfusion.  You get the idea. There are also some special beads like the crazy tortoise bead to the right of the Beads of Courage bead symbolizes a lumbar puncture.  You get the face bead when you lose your hair.  The fish bead is a symbol of the courage you must have to travel away from home to get treatment. This is only one of the strings.  There is another full string somewhere around here also. 

Team Matthew Fundraising

Before I get into the fund-raising specifics, I am happy to report that Matthew came home late yesterday and is on an antibiotic as a precautionary measure.

Our amazing friends Katherine Bottarelli and Jennifer Rosenbaum have been working diligently on coordinating and organizing many different fund-raising opportunities for Team Matthew.  The support for Matthew so far has been unbelievable and for that, I cannot thank people enough.  There are a few other ways to donate to Team Matthew.  These donations will go towards covering the medical costs associated with Matthew's leukemia. 

• Team Matthew Trust - there is a special trust account setup through Bank of America for Team Matthew.  You can make a contribution to this account by walking into any Bank of America location and telling them the donation is for Team Matthew.
• Giveforward.org - A website has been setup to also accept donations for Team Matthew.  You can access this website here.
• Community Events - There are several special events planned in and around Naperville over the next few months.  On the right side of this blog, there is a calendar highlighting each one and also a link to any required flyer if one is necessary.

Ouchy

After waking up several times last night saying 'Ouchy, Ouchy', it is not surprising that during his reguarly scheduled clinic appointment, Matthew was admitted to CMH and started on anti-biotics as a precaution.  One of the great challenges of experiencing this with a child Matthew's age is the inability for him to tell you how he is feeling or what it is that hurts.  We are often left to guess and wait.

The Bone Marrow Drive

A sincere thank you to all who came out to the bone marrow registration drive yesterday at St. Thomas church in Naperville.  We had a great turnout and had nearly 90 people register for the bone marrow registry.  A huge success!!!  Thank you.  Here are a couple of pics from the drive and also from around the house afterwords.

Daddy / Daughter Valentine Day Party

I was Claire's guest on Saturday morning at the Happy Times Preschool Valentines Day party.  We had an awesome time making an art project and eating a couple of doughnuts. 

Drive Details - Drive For Matthew-St Thomas

Drive Details - Drive For Matthew-St Thomas

Mdogg is back home

Matthew returned home yesterday as scheduled.  He seems to be doing very well except for a case of IHS (Itchy Head Syndrome).   I just made up that syndrome but he does have a very itchy head which is probably caused by his chemo and he has little scratches all over his gigantic dome.

Claire and Matthew

After spending the day with her Aunt Jen, Claire came to the hospital to see Matthew.  They were both so excited as they walked around the halls holding hands.  Matthew has been doing pretty well with the exception of a recurring fever which is most likely caused by his chemotherapy. 

Round 3

Matthew has been home for the last couple of weeks which has been great.  Today, he is back at Children's Memorial for his third round of chemotherapy.  This round lasts only 5 days but the dosage is supposed to be much more intense than previously experienced.  His counts are up where they should be and he had a bone marrow biopsy this morning.  We should have the results of that over the next couple of days.