Nemo

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

tummy hurts

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

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

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

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

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

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

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

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

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

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.

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

"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

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.