Saturday, January 31, 2009

Brothers... Day 80 31JAN09

Today was a day for brothers to hang out and enjoy each others company. Jamie and Renee went shopping with her mom, Christian stayed at home with me and had a good time with his little brothers. I love to watch the three of them do things together, I will often times just sit back and absorb how they interact. There is a special joy a father feels seeing in his children the little things, the "good" things, that he has tried to impart to them surface and shimmer. They are glimpsed but for a moment and then quickly obscured by the noise of everyday life. But they are there...

Joshua was warm today and decided to take off his shirt and walk around for a while. This is something he used to do all the time before he got sick, he would sometimes spend the whole day shirtless. I look at my baby now with his shirt off as he runs into my office to ask me a question and there are the signs of his cancer. The scar from his port surgery, the port itself. That bump on his chest where they inject all the things that we hope will cure him. Still a little red from being in the hospital. Silent, indelible reminders that scream at me, no matter how good of a day he has, no matter how warming it is to hear his laughter, no matter how fiercely we love him, he has cancer. I smile at him, try not to stare at his scar. It hurts... It hurts alot...

Tomorrow the worlds attention will be dominated by games and frivolity, commercials and food. I will watch the game for the commercials like I do every year, pull Joshua close to me,  cuddle, and weep inside.

Not much... Day 79 30JAN09

Not much to report on today. The weather has gone from being tolerable to miserable, pouring rain and a big drop in temperature. The weather is forever fickle here in the "Sunshine" state.

 Joshua continues to do well at home, I talked to him from work today and he happily reported that he had eaten 2 sandwiches, "one this morning and one this afternoon." He promised me he  would eat 2 a day. Promise kept.

Things are already starting to get crazy here in preparation for the Superbowl. Traffic coming home tonight was insane, cars everywhere and no one apparently had any idea where they were going. I am really glad we do not have any reason to go into Tampa over the weekend.

Thursday, January 29, 2009

100 days of learning. Day 78 29JAN09

Today marked a momentous occasion in the world of academia, the Hundredth day of the school year. Josh celebrated with Ms. Lydia after he got his homework finished.

I am pleased to report that Joshua is honoring his promise and eating much better than he did when he was in the hospital. It is great to have him ask me to cook him something! Big change from just a few days before.

Joshua loves to look outside at the birds and other critters that frolic behind our house. I am sure that he wishes he could go out and play more but we are still being overly cautious about germs.

Joshua had a blast today in Music class and composed his very first song. I have posted a video below of him playing with some of the ideas that made it in to the finished song. I haven't figured out a way to get the whole song uploaded yet but I will see what I can figure out. I was so proud of him!

 Jarrod really took off today in Music and has discovered how much fun you can have making sounds that blend together . He spent hours working on the computer composing different tracks. I love my job!

Wednesday, January 28, 2009

Home at last! Day 77 28JAN09

The doctors have taken pity on Joshua and even though his count actually dropped to 291, they have let him come home for a few days! He had to promise to eat healthy and build his counts up for next monday so we can get back on track. His ANC needs to be up to at least 750 by then. Time for us to crank up the germ warfare program again.

I tried to be stealthy and get a picture of Joshua and Renee but they were just to fast for me tonight. I will see how their reflexes are tomorrow. I would never get a picture of Brittany.

I am thrilled that Joshua is back home for a while especially since the upcoming Super Bowl is taking place four blocks from the hospital and that part of the planet is going to be insane for a few days.

Tuesday, January 27, 2009

Josh got his ANC up to 352 this morning! So close, we only have a little ways to go so they will spring him for a couple of days. Josh got another day pass and came home to do school work with Ms. Lydia. 

We managed to get in some awesome hammock time this afternoon after he was done with his school work. Mom even got into the action. Yes, it is warm enough to lay out in the hammock... We have gone from cold to warm again. It is hard to handle the crazy changes in the temperature sometimes. We go from below freezing with frost on the ground to almost 80 degrees in the span of four days. I never know what to wear.

Jarrod is doing awesome in his virtual school and gets his work done quickly all by himself. He is really flourishing so far and I think he is learning way more than he did before.

Blue skies and not a care in the air:)

Toady we received a surprise visit from Master Pe Yu master of all that is unknowable and smells like aged parmesan. Ain't little boy feet sweet?!

I was watching Josh play a game on the Wii today and he was really concentrating on playing. It was hilarious to watch. He looked like he was trying to chew his tongue off:) 
He was definitely having fun! I am not sure if he plays any better like that but he definitely gives it everything he has.

It is great to see him playing and being a little boy...

Monday, January 26, 2009

Day 75 26JAN09

Joshua managed to get his ANC up to 181 today, to bad yesterday it was 180. We still have a ways to go. Doctor O is going to give him Megace, an appetite stimulant, in hopes we can get him eating enough to get his counts elevated. I would be happy if he would make a surge in his ANC so we could have some hope that he was going to rise back up.

Josh got a day pass for good behaviour and got to visit home for a while! It was nice to see him playing and doing homework, etc... The house and all its sundry inhabitants miss the sound of his feet and the tinkle of his laugh. A house is, after all, nothing more than a container for its inhabitants and their trappings without love and the resonance of life. His appetite was pretty good here at home and he ate everything I cooked for him. The kitchen is always open for hungry little boys and the menu will magically change depending on what they want. He will probably get another day pass for tomorrow so he can come home to work with Ms. Lydia on school work and get a little rest.

In other news, we were honored today with a visit from Mr. Fu master of all that is mystical and unpronounceable. Although his visage was a little frightening he in fact turned out to be a fascinating and rather hungry guest. 

Sunday, January 25, 2009

Something is missing... Day 74 25JAN09

Joshua is still stuck in the hospital, his ANC was 180 today. Appetite about the same, Dr. O is still trying to find the magic combination of meds that will get Joshua eating right again. There is a chance if his ANC jumps up a ways tomorrow that they will let him come home for a while. We will just have to wait and see.

In case you are wondering about the missing tooth, Joshua was wrestling with another kid in the playroom today who managed to knock out one of his front teeth. Don't freak out! It was loose and would have fallen out by itself in the next week or so. Luckily his platelets are up so he didn't bleed very much. The other one is also loose and it looks like he will not have his front teeth for a while. It does, as he has discovered, make a great place to put a drinking straw.

He felt better today and after a small lunch managed to get in a couple of surfing sessions. He has been training the other kids in his technique. Here is a picture of him rounding turn 3 leading by a narrow margin. He managed to hold on to the lead and win that heat.

We are currently petitioning the Olympic Committee to see if we can get this added as an event for the 2012 summer games in London.

When I was at the hospital today Josh and I walked all the way down to the cafeteria so he could get a piece of pizza. He has lots of energy to burn off. I think kids are somehow nuclear powered or something. Even though he doesn't eat much, he still has tons of reserve energy. He has about worn out his current pair of rather stylish and really blue hospital slippers.

My boy is growing up. As I was folding Jarrod's laundry today it hit me, it was like folding my own clothes. They are almost the same size. Never mind that I accidentally slide into his flip-flops if he leaves them in my parking spot. He is getting big, bigger every day it seems. It amazes me how fast this happens, I mean it shouldn't, I have been through this before. But even so, he was just a little bundle of joy last week wasn't he? The moral my friends? Cherish every day and file it away in your cerebral scrapbook, you add pages faster than you think.

Saturday, January 24, 2009

It's not where you are it's who you're with. Day 73 24JAN09

We have never been all that normal, why would our anniversary be any different? We all gathered in Joshua's room for dinner, drinks, and companionship. It was a great dinner and the best part is we got to share it as a family.

 Josh is at least eating a little bit, Dr. O changed his meds and so far it seems to be working. His ANC actually slipped down a few points today but we are confident that it will begin rising soon. All of his other labs were normal or close to it. His attitude was much improved today and he had a great time playing with everybody.

I noticed yesterday that his eyebrows are almost gone... I am not sure when they slipped off his face but they did. If anyone finds them let me know.

In the next installment of kids never cease to amaze me when they are bored I offer the following:
This is what the "kids" were doing down in the play room while mom and dad we relaxing back in the room.
I am positive that they will be the terror of whatever nursing home they all wind up in;)

Friday, January 23, 2009

Not this time... Day 72 23JAN09

Well camp didn't happen. Joshua's ANC only inched up six points to 138 today and he is still having trouble eating enough food. Doctor O is going to try a couple of thing to help stimulate his appetite and hopefully get him eating real soon. If none of it works he will wind up with a feeding tube. I really hope for his sake that is not what we have to resort to. He was really bummed about not being able to go to camp but there will be other times. We are going to have to stay in the hospital until his counts get to 500 and the Doctors are sure he is getting enough nutritious food. The longer his counts stay low the longer we wait until he can start chemo. It feels really weird to be hoping for our child to have more chemo but the delay just feels worse.

The weather was nice enough today for Josh to get an hour pass to leave the floor and go take a walk around the hospital and even outside for a bit. He said he really liked getting to go out with mom.

Renee got to take the evening off and come home for the night, her mom is staying with Joshua. This is great because tomorrow is our twelfth wedding anniversary! I am glad that we will at least get to spend part of the day together. It is really hard on all of us being apart for these extended periods of time. She had a really rough time with Josh today. He was in a bad mood and taking it out on everyone that was close by. I am really thankful that she can be at home for a little while.

Jarrod got to come to work with me today and sit in on one of my classes. According to him I am a pretty good teacher although he could not remember anything I talked about. Sounds like one of my regular students:)  It was really cool to have him there with me and I hope we get to do it again real soon.

I have discovered why college students are so poor. This is what $8 will get you in the college cafeteria. This is the least expensive thing on the menu other than a hot dog for $3.
Not all that good either:(

Thursday, January 22, 2009

Mankind had its chance - Brrrrrrrr... 22JAN09

The morning dawned cold here. That's right, I said cold. It was 28 degrees this morning when we got up, even by northern standards that qualifies as respectably frigid. By Floridian standards the ice age has returned, mankind has had its chance to flourish, and the dinosaurs will now get another shot. To make matters worse Jarrod and I can't find our winter flip-flops anywhere in the house.

Josh is still sequestered at the hospital, his count rose slightly to 134 on this mornings labs. It is an upward trend at least, a definite step in the right direction. He will probably get to come home tomorrow even if his counts do not improve as long as he is not running a fever.

Jarrod and I spent the morning working on Language Arts and writing, not his favorite subjects. Funny how doing school work at a sixth grade level definitely does not make one nostalgic. We managed to get it all done with plenty of time left over for him to get in some hard core engineering time.

The ingenuity of a bored child never ceases to amaze me. Josh has discovered a brand new sport, pole surfing. Apparently he practiced all afternoon as has become one of the front runners in the new Pole Surfers Leauge. We are so proud of him...

He is actually connected to the pole by his IV tubing, in case you were wondering. Oh yeah, he's mine;)

Wednesday, January 21, 2009

Paparazzi - Day 70 21JAN09

I love it when Josh treats me like the paparazzi. I have to throw the camera up and snap a shot quickly before he hides his face. Sometimes I am not so quick.

Josh got to turn in his transfer ticket this afternoon and move to the Hem/Onc floor he knows only too well. As fate would have it we are back in the same room where we started our journey some seventy odd days ago. Weird how that happens.

Joshua's ANC is slipping, we were at 119 on Monday, 160 last night and 95 this morning. Hope to see it swinging up tomorrow. We are of course now on DEFCON 5 germ alert, better sanitize and put on a mask before you come into the room or Josh will yell at you. His fever has all but gone away, his temperature is just percolating a little bit high.

The reason for us becoming Grandparents at our tender age stopped by to visit for a little while. Jamie is doing great so far:)

My new nephew Dylan has discovered that while they are not actually edible, fingers do in fact taste wonderful. I am happy to report that he is home and enjoying depriving his mom and dad of as much sleep as he can. Boy I don't miss those days;)

(Is this kid cute or what !?! Not that I am biased in any way...)

My beautiful helper and companion. Who because of his larger mass cannot hide from the camera as quickly as his little brother.

See that little tiny piece of the pizza Josh has in his mouth? You know the part, that little tip that you taste to see if the pizza is hot enough to inflict third degree burns on your tongue. That is all we could get him to eat. We are still struggling to find a way to get his food intake up, he eats a little and his stomach starts to hurt. Even with a dose of Zofran he is not eating up to his normal intake. This is our next big challenge I guess.

If his counts stay up and no fever returns we hope to have him back home by Friday. I would say that it is pretty much a foregone conclusion that we will not be able to go to camp this weekend.

Tuesday, January 20, 2009

Thermostat problems... Day 69 - 20JAN09

We found another bump in the road... Joshua was increasingly tired and clingy today and we knew something was up. Turns out that his little internal furnace is cranked up to high again... We started at a toasty 99.4 then 99.6 then 100.6.

 At this point having violated the 100.5 mark we call the doctor. We know what they will say. We start packing while we wait for the call back.

The phone rings...

We hit the highway.

We are in a different part of the Children's Hospital this time, no empty beds on the Hematology/Oncology floor for the time being. We get a transfer ticket to hold on to.

The nurses are nice but don't have the same confident manner around Josh that the hem/onc nurses do. The nurse that accessed his port looked kinda nervous. She's qualified but probably doesn't get a whole lot of practice. I watched her like a hawk. She did great.

So begins another mandatory 72 hour stay complete with broad spectrum cefepime, blood cultures, and lots of labs. We are still holding on to the tiniest glimmer of hope that he does not have an infection and that his counts will shoot up by Friday so we can sneak off to camp.

We got him settled in to his room and it was already late so Jarrod and I said goodnight to Joshua and Renee and we trudged back home. We miss them already.

Monday, January 19, 2009

The results are in!

Ladies and Gentleman for your wonderment and amazement this evening, straight from the mountains of Colorado, Prince of the winter, Apple of the eye, the one, the only:



(He's the cute one on the left)

Thats right, it's official! Word came down from the Colorado office earlier today, after intense deliberation and thoughtful consideration a decision was reached. A loud cheer was heard from the onlookers gathered in the streets below.

Alyssa and Dylan are doing wonderful and I am so jealous that I cannot hold the cute little bundle that they have been blessed with. If only I could find that stupid teleportation machine Jarrod and I lost in the garage...

Not Even Close... Day 68 19JAN09

Josh got up this morning and he and Mom and brother headed out the door with suitcases in tow. Off to the clinic they went to get Joshua a CBC. Did we qualify for the next round of chemo? Not even close. His ANC came back at 119. Big sigh... It was 258 on Wednesday. We are going in the wrong direction here. He was upset when he got home as if somehow it is his fault that he doesn't have enough white cells. It breaks my heart. 

SO... no overnight stay, no chemo, we took the left fork instead of the right one. Now we wait and pray that his little body is climbing up hill and he will be ready next Monday.

Friday we go in to the clinic in the morning to see if he is at least 500 so he can go to camp for the weekend. He really wants to go and he will be upset if he gets blown out because his counts are down. We all want to go, it will be a fun weekend with the family in an environment that will help us grow and get a little stronger, a little wiser.

 Meanwhile Renee and I fret that we are losing treatment time and adding days onto the end. As far as the rest of the day I realized around lunch time that even though I had been getting ready to go to work this evening that it is, in fact, a national holiday and I have the night off. Glad I figured it out before I drove 35 miles to sit in an empty parking lot and wonder where the heck everybody else was:0

The boys did school work (they don't know it is a school holiday). We all spent the afternoon having a good time and spending time together that we would not normally have. Jarrod was crowned Qwirkle champion for the evening after soundly trumping both his little brother and Dad. He won with his usual gracious style.

Its business as usual for the next couple of days, constant sanitizing, trying to get Josh to eat more food, school work. Our biggest worry right now is keeping josh from picking up any kind of infection or running a fever and earning a three day pass to the hospital. 

Josh started up the Wii today to use the Wii fit and when his Mii (his character) came up he decided it didn't look like him anymore because it had hair. So we made a little change.

Sunday, January 18, 2009

Day 67 Update - 18JAN09

I got some new pictures of the party yesterday from Sally so I thought I would share.

Tomorrow morning we rev back up and start another round of chemo. Renee will have Joshua at the clinic at 9 in the morning to get blood drawn and see if his CBC qualifies. We are really not liking the forks in the road, if he doesn't qualify we are only postponing the inevitable and any delay scares both of us. We want our baby to get better, onward and upward, no stopping or coasting backwards. It feels like every minute we delay gives the leukemia cells a chance to get a foothold, start rebuilding themselves. I know this is ridiculous but this is what I picture in my mind and it is scary friends...

Joshua is in good spirits and we had a lot of fun today playing and hanging out together. Our biggest issue right now is getting him to eat enough food. When he was on the steroids I was waiting for the grocery store to offer us a key so we could get food in the middle of the night. Now he takes a few bites of something and puts it down. I asked him earlier what we could do to get him to eat more and he replied, "have them give me Prednisone." The practical wisdom of children. I walked away thinking, "if you had any idea what you were like on steroids you would not even bring that idea up."

We are steeling ourselves for another overnight stay at the hospital and hoping that the combination of drugs does not kick off a high fever like it did last time. We are supposed to go to camp this weekend and all of us are really looking forward to going.

Father! - to God himself we cannot give a holier name. ~William Wordsworth

 There are three stages of a man's life:  He believes in Santa Claus, he doesn't believe in Santa Claus, he is Santa Claus.  ~Author Unknown

Eric and Alyssa have a new baby boy! He was born at 2:50 pm 

I have been like a nervous cat since I got the first message last night from my brother, "we are in labor...", then another early this morning, "her water broke..." and then finally the triumphant message, "Its a boy!". I am so thrilled!

No name yet... more to come...

Saturday, January 17, 2009

Day 66 Update - 17JAN09

Today was one of those "normal" feeling days when we let our guard down a little bit and try and act like a normal family. 

We all went over to the Robelli's house for Jayden's  two year birthday party and had a wonderful time. Josh got to play and just be a little boy for a few hours. Of course he was wearing a mask, he's the only bald kid, and Mom and Dad are majorly over protective... Before we would have walked in and looked to see what kind of spread was laid out to eat, now we look to make sure there is hand sanitizer. But he still managed to have a lot of fun. We did to. It is one of the few times in the last couple of months that we could go somewhere that did not involve lots of waiting or worrying. Instead we got to visit with good friends, make some new friends, eat way too much, and watch as all the beautiful children played and giggled and ate cake. It was nice.

Monday we go back to being a family dealing with cancer.

Jamie and Christian came over for a while this evening to visit. Jamie is so cute talking about getting maternity clothes and looking at stuff for the baby she is nurturing inside of her tummy. I still am having a hard time thinking of myself as a Grandfather and Renee as a Grandmother, but we are warming to the idea. Still have lots of time before we officially assume our new roles. Still have lots of Mountain Dew and M&M's to stock up on for babysitting:)

Eric and Alyssa are hours away from bringing a new life into the world! We are anxiously awaiting news and vital statistics. More details to come...

Friday, January 16, 2009

Day 65 Update - 16JAN09

This is Joshua pretending to be asleep...
This is dad trying vainly to get him to open his eyes and take a picture. Dad lost.

All my knowledge of Joshua's day is second hand. I left for work before he got up and came home in time to put him to bed. Based on interviews with the other members of the house I came up with the following. Mom and Jarrod spent the day trying to get Jarrod's reading and language arts assignments completed, Joushua, according to himself, "Didn't help." Other than that I surmise he had a good day.

It is still our hope that while Joshua is not helping his brother with school work his bone marrow is busy churning out trillions of white blood cells so his ANC will be over 750 on Monday. He was more active today and this evening which usually is an indication that his counts are at least on the way up and not bottoming out.

Our turtle has apparently gone stark raving mad! For those of you who don't know, we have a large African Leopard Tortoise named Caesar living in our back yard. 

He is a reptile, which is supposed to mean that his blood is cold, and when it is cold outside he sleeps. Sleeps deeply in his heated house where he can stay warm. Not our turtle... three times today, including at 10:oo tonight Renee found him out in the yard under a bush. It is 43 degrees outside and dropping! Yet this is when our insane hard shelled friend has decided to leave the comfort and warmth of his house to go wandering around in the yard.