I 'm sure not many people- if any- will read this.
and that is ok, but I needed to write it.
I would tell someone this, but I do not know who to share this with.I will share with Jamie- but just not today. It's too tough on both of us.
I can't imagine putting something as personal as this on Facebook. Just seems obscene.
So here it is:
One year ago today I told my son, the love of my life, my reason for being- that he was going to die.
His cry of "I'm going to DIE?!" echos in my brain on and off, and I'm sure it will forever.
Then I spent the night holding him... and wiping the blood off of his face...
as he died of Leukemia.
Maxwell Powers Herlehy died on the morning of May 18 in 2011.
I think this day- when I told my oldest son he will die, haunts me worse than the day that he died.

Official Time

Got the Official time today from the marathon- 4:26:35

Very happy with it. I like this marathon thing and will continue to do it. Though I believe the next one I run will be a 1/2 that I run with Jamie once she has recovered from baby delivery.

Marathon Man!

So it's been a while since I've posted. Mostly because I feel that if I don't have anything interesting to say I'd rather not waste peoples time. Also I have forgotten, and of course Max.

So I will be running the River City Marathon from Folsom to Sacramento tomorrow morning.... and it looks like it will be in the rain. But I will finish.

So the reason I'm writing today is when Max died last year I promised myself 2 things. 1 was that I would get in shape. And the culmination of this is that I wanted to run a marathon before the 1 year mark (May 18th). Also we will be welcoming in a new baby into our household. Jamie is due April 27th, so I can't wait too long (this will be news to many of you).

What I wanted to do was use this Marathon running also as an opportunity to raise some donations for my football program. I know some of my friends out there will be very cynical of this whole 'Herlehy running a marathon without properly training' thing. I get it. But here is your chance to offer up an incentive for time! Here is my goal: if I can get 100 people to pledge $20, then that raises $2000 for the football program. Much better than buying crappy frozen cookies.

So this is what I'm looking at for times:

If I get 4 hours and 20 minutes I would be crazy crazy happy, and mostly in a state of disbelief. Not expecting that. I would be super duper happy with anything under 4 hours and 30 minutes. A chance... maybe not a high chance, but a chance. And I will still be happy with myself for anything under 5 hours. Actually who am I kidding? I finish and I'm happy, but those are my goals. If anyone would like to pledge some money based on me finishing, or finishing in a certain time I would really appreciate it.

I'll post my results tomorrow night along with the address for the Wildfires Boosters Club, since any pledge given will be tax detectable.

I also have included 3 pictures here. The first is the Max tattoo I got at the start of the summer.

I designed it with some of the super heroes themes with the green light saber underneath. Some of his favorite things.

I also included the back cover of our football program from this season,

... and a picture of the Max sticker each player wore on his helmet.

We dedicated the season to Max and had our best season ever making it all the way to the CIF championship game. He has been motivating me with my running all year, and he will continue to motivate me tomorrow when I'm hurting like a sonofabitch.

Thanks for taking the time to read this, pass it along and...

Wish me Luck!

We are the Dragons

I'ts a book written by Max. You may need help translating- but you're own your own.

Merry Christmas!!

3 weeks In

This is a football post. We're three weeks into our 2009 season. Once again I have not been keeping consistent with the updates. It was a lot easier to make consistent entries when we were trapped in the hospital and there was nothing to do. So onto football.
Week 1 was brutal. Brookside Christian was a good team, and we were not. Then. We had the wrong scheme in place the first half to counter their speed, and we did not really block anyone nost of the night. We've learned from that and gotten better.
Week 2 was a terrific win for us. We really should have beaten Delhi by 4 touchdowns or so. We had 2 TD passes called back on rediculous penalty calls, and the ref was telling the other team he'd do what he could to make sure they'd win. No joke. So anyhow, we had a 7-0 lead with time running out. Delhi is driving, and gets to the 1 with no timeouts and the clock ticking (about 40 seconds or so). We stop them 4 times from the 1 to win the game. Really cool.
Week 3 we travel to Galt HS to play Jim Elliot. Once again we improve some more and we come away with a handy 21-7 win. Blocking is getting better and better and the young guys get experience with being o-lineman.
This week we have Sierra Rite of Passage at home. It looks to be a fairly evenly matched game. W feel like we'll win if we play good. We'll need to limit our mistakes (penalties and TO's). If we can succeed in those 2 areas I think we'll be fine.
We're happy about being 2-1 and looking forward to our next 2 games at home.
I'll try to keep up on this, but we all know how it goes.

-Coach Herlehy

Swine Flu?

Swine Flu? I say Pansy Flu. So we had an official case of the H1N1 Flu virus (AKA- the Swine Flu). Jamie and I went to the coast and when we returned found that young Samuel had been running a fever since that morning. The fever was there, but with Motrin in the system he was totally normal. We had him tested (swabbed) for the swine Monday morning when Max got his blood draw, and it came back positive.
So yeah we were worried some. The news makes it out to be Ebola. But in the end Sam only fevered for 2 days. Nothing serious. Bay had a fever for only one morning, which caused us to keep her home from the first day of school (talk about a 6 years old's world coming to an end).
Max was fine. Jamie and I felt tired, but that could have been tied to our weekend at the coast. Hey-O!
I say Pansy Flu. That was seriously the sissiest flu bug we've had in our house ever. That's right- I'm taunting.
First week of football done. Looking good. We got in full pads Friday. It will be interesting to see who emerges as our #1 TB. More to come.

Practice Begins

First Practice of the 2009 Season for both the Varsity and JV football teams will be Monday August 17th from 3:30 to 6:30. All players must have their physical paperwork turned into the school office, and have recieved clearance from the school before they are allowed to participate in practice.

New counts

So they took new counts and things are still looking good. They have 3 different measurements when they look at the immune system: t-cells, b-cells and monocytes.
Max is 100% Sam on the t-cells and monocytes and 99% Sam with the b-cells. They want it to be 100% Sam, but 99% at this stage is not a problem.
Otherwise things are going well. Kidney tests are not great, just a little out of the normal peramiters. So they took him off a med.
All else is still good. We're starting to wrestle again, and getting more and more active- and less and less pampered. So that is good.
Football starts next week. Should be a very exciting season. First home game is Friday September 11th vs Brookside. JV will face Del Oro JV. That may be a doozy.

From Davis?

I knew a Sarah Simpson at Davis. I have a sarah simpson 'follower' on the blog. Are you the same? Can't figure out how to contact you to ask without using the blog. Sorry everyone.

Where have I been?

OK OK. So we got out of the hospital, and I just stopped logging in. I say fair enough- give the guy (me) a break. I just was happy to be home, and when I've had free time at the end of the night between kids going to bed and Jamie and I going to sleep- I've been able to hang out with Jamie!
That's been nice. We didn't spend a night together for 5 weeks.
So I saw Jenny at the store in town and she got after me for not posting any more updates. I said I would and she threatened to hold me to that. So here are updates.
Coming home has been real real cool. The folks around town have worked so hard to make our house ready for Max to come home. We have a lawn for crying out loud! And Sprinklers!
Max is doing better and better just being home and moving around. His numbers keep doing great. His blood draw this morning shows that his platelets have actually reached the level where he is allowed to ride his bike or scooter, so that is a nice step.
He has tons of meds every day. Like 7 pills in the morning, 2 in the afternoon, 5 at dinner, then 2 at 1:30 in the morning. Yep. but hey.
A big step was this past Thursday (I think)- Max got his pick line out of his arm. He had the tubes in there and Jamie and I were doing the blood draws every Monday and Thursday mornings then driving the vials of blood down to roseville. We also had to hook him up to IV fluids at night. A bit of an inconvenience, but that is gone now. That night Max said the dinner prayer and he thanked God for "the best- ... one of the best days of my life" for getting it out.
People have asked about Sam- He is fine. Literally nothing slowed him down after that day. And Baylor is good, we've all settled into our home routine. We have to stay home way more than we normally would, but that is about it. Max wears a mask when he goes outside. We play soccer in the front yard. Max feels as if he is the best goalie in the world.
Ill be doing football updates on a regular basis now. Right now I'm in desperate need for coaches. If anyone out there would be able to help or know someone who could. please have them call me on my cell: 530-613-1054. We start practice Monday the 17th.
Talk to you soon.

Going Home

It will be an even 5 weeks. We're going home tomorrow- Monday July 20th. That's 35 days and 34 nights down here.
Max will still have his share of upheaval and uncomfort- but at least we'll have it at home.
I hope to continue to post things but it may not interest many of you any more. I was wanting to do another movie with Max, but it looks like that won't happen down here today.
Thanks to everyone for their help, their prayers, their time and their love for our family.
We will never forget any of it. I will never forget.

First Movie

This has been something that I have been wanting to do with Max for a while- then especially during our hospital stay.

Of course the quality is low, and the final movie is near totally pointless, but that was the fun of it. I tried to talk him into making a movie with the 'guys' playing a football play. But he was having none of that. Here it is. I really like the credits and just watching Max watch himself in the webcam, more than the movie itself.

setting a go home date

Dr Horne says everything is going great. Max needs to start moving around and eating. His oxygen is great. She thinks that we could be going home as early as thursday or Friday- as late as Monday or Tuesday.
Kevin Haycraft has brought his tractor over to level out the yard for Max's arrival home. There is a small army of helpers. Jenni Fawcettt and the boys (Zac and Chris), Dillon Potter and his mom Stevie, Tyler Furness and Super Dave, Gage and Middleton are there.
Pretty cool.
I may have them dig me a pool while they are there. At least a small football shaped jacuzi.

come home prep

well, we really still don't know when exactly we'll be coming home, but they've started talking to us about discharge. leaving the hospital kind of discharge. It may be a week, it may be two weeks, but it's in the conversation- and that's nice.
Sunday they'll do a Gaft analysis to see how many of Sammy's cells are in there. If his white cells are half as intrusive as that child is- then we're golden.
So Discharge Stuf:
Max will have to wear a mask whenever he goes outside for the next 6 months or more. We have to steam clean our carpets, and any place he would want to go would have to have just steam cleaned their carpets. Limits the choices.
No swimming for 6 months to a year.
Also, dust is bad for him- real bad. And if you've seen our "yard" you would see the problem at hand. It's all dirt. We've been working this summer to pull up all the weeds in order to seed, but now we have to go sod. I think we'll throw gravel down on the side of the house to keep the dust down. We'll see, and we'll figure it out.
Right now it's 11:52 PM. Max just got up feeling bad, and we rushed to the bathroom. His blood pressure is good and he has no fever right now, and we'll try to tuck back to sleep.
I think he'll be feeling better tomorrow. One nurse said she often notices an every other day pattern with BMT kids in the recovery process.
Still, I'm happy to be dealing with all these issues. It's really a good thing.

Did Someone say Discharge?

So not to get to far ahead of ourselves, nor overly excited, but the staff here at ucsf have started broaching the "D" word with us- yes that's right: Discharge. Details about going home. When we might (they think in 2 weeks) what we need to take care of at home (long list I'll cover soon) and all the goodies that go along.
Max is soooo much better this time compared to the last time I came down. His ANC has been up above 500 for 4 days now. This means that mom and dad can eat and drink in his room. He also can walk around the outside hallways if he wants.
He's still dealing with oxygen saturation level issues- pretty much he needs to wear the ox-tube when he sleeps. There are a team of specialists to discuss and pontificate on this, as well as an x-ray and a CAT scan taken of his lungs. The preliminary feedback I got from our night nurse last night (of course nothing from the specialists- they too busy being special together) is that there is a little something in his lower left lung. Probably from so much innactivity- but maybe pnemonia. Not too much to worry about.
We've also been visited by the Infectious disease team. Max has had a nagging, reoccuring fever. Nothing too bad, but the team wants to figure out why it's hanging around. So they'll start trying to eliminate possibilities.
Overall Max is feeling great. He's sleeping right now (9:10 AM Saturday morning). He got up and walked around the room a bunch. Had his playful goofball personality back. Did have a couple of nasty bloody throwups yesterday, but they resulted from him trying to shimmy from bed to gurney, then gurney to cat-scan.

tuesday goings on

While Max is doing better- and he is- there were still some real tough times for him and mom tuesday. He had a free flowing bloody nose for over an hour. Jamie had to try to keep pressure on the nose, while also keeping his oxygen tube in. Max was also throwing up blood, and some bloody tissue yesterday. The docs say this is ok. They compare it to when you have an "owie" and it scabs, then as the wound starts to heal the scab falls off. Well Max's mucusitis cause a whole bunch of wounds in his mouth, throat and stomach (maybe all the way through the other end). The bloody tissue is the scabs sloughing off.
So far today he's been doing well. He had some fever last night, but only 101.2. They have continued to reduce his morphine amounts, and he has not been feeling greater pain- so that is good. They are also reducing the oxygen levels in his tube as they try to ween him off that. He needed it because all the sores in his throat made it difficult for him to get the proper level of oxygen saturation.
I think that's it for now.
On the football front we participated in a passing league contest at Del Oro Monday. While we didn't win any of the 3 contests we gained a bunch from the wxperience. We're going against big high schools and the boys began to settle down as they realized that the other kids were just high schoolers like them. We'll be better next time. Unfortunately Christian Addington, who was tearing it up at WR, broke his collarbone when a Lincoln player tackled him to the ground after a catch. Not supposed to be any contact in these things, so that was deffinately a bummer. He should be back in time for the season.

video of Max

Here is a video of Max from Tuesday. Jamie is with him in the hospital so I can attend football practice (thank you fantastic football coach wife!!)

It's hard to hear Max, but that is because it's hard for him to talk loud enough to hear even when you are right next to him. He has been doing better. They are cutting back on his morphine, and he went almost 2 days without a fever. The fever is back today, but he is still making strides of improvement.

Here is the video:

my roomate- the rattlecan

Max is actually doing better today. The biggest issue is just the rattling that is going on as he breathes. But the docs and nurses have x-rayed him and his chest looks fine. He's doing better. Nothing to get real excited about. Just that the fevers are not as high, and the blood pressure has not really been an issue today, and only one throw up verse multiples. But still- better. Fever never got over about 102 last night and it's been regularly going to 104 every night. He's still sleeping most of the day, and shaking real bad when he stands to go p, but we have a target of when we think he'll start healing these sores.
The doctor says probably around the 13th, 14th and 15th is when they expect to see Sam's white cells coming in and starting to heal him up. Maybe even a few days sooner than that if they cut out his Day 11 Methotrexate (they are leaning toawrds cutting that out).
Football has our first passing league summer contest this monday at Del Oro (5:00- 7:00). We'll be going against Davis HS, El Camino HS, and Lincoln HS. We're looking forward to the experience. I predict we'll be shaky at first, but then settle in and hold our own. Our kids need to see that all these other mythical schools around us are filled with normal high school kids- just like them- we'll just not nearly as blessed since they don't live in Foresthill!

Fireworks

The Fog stayed away this evening (which is actually a pretty big deal) and we had a clear view to a couple of firewors shows. We had a decent view (granted from afar) of a show that looked like it was going on down past the Mission district maybe. Real Nice. Then we also had a view of a show going on over in Marin (even further away).
The PCA (Dave) helped us get the bed turned around so we could better enjoy the show.
Max was a bit disappointed. I think he was expecting them to come all around the building. That would have been cool.
He's also fighting the exhaustion from being so run down and feeling so cruddy. He just did not have enough energy to really have the right amount of patience. But we did have fireworks. And we did enjoy it- I know daddy did.

a Sobering Clip

While evryone asks how Max is, and we usually say things like "oh, he's doing OK" or "he's hanging in there".
The truth can be that he is pretty miserable. It's just tough to say that.
Here is a clip of him sleeping. I think that you can hear the gurgle and rattle of his breathing. The doctor said that he has the worse case of mucusitis that he has seen in a long, long time. he expects it to be another 8-10 days before Max will start feeling any better.