Saturday, February 28, 2009

Day 107 28FEB09

This is how much hand sanitizer we have on our kitchen counter. Think we are a little paranoid about sanitizing? We make Monk look like he has dirty hands.

Josh is teetering today. His temperature has been steadily climbing all afternoon. 


We started to worry a little bit. Josh had a popsicle.


We are dreading what is coming next. 


Josh is upset because he knows what this means.

We made it to 100.5 and Renee started packing.

We waited an hour.


I dropped Jarrod off at Renee's parents for the night.


Another hour. We are packed and ready to go.


Renee is sleeping on the couch and will be checking his temp every couple of hours. We were sure we had a ticket to the hospital tonight. We might still.

We have been home for over 3 weeks this time. Hoping that we can make it longer...

Friday, February 27, 2009

This is the face of a child who cannot go to Universal Studios tomorrow and have fun.

This is the face of a child who keeps going every day.

This is the face of our little angel.

Joshua has been trying to start running a fever off and on all day. Nothing earth shattering, just higher than normal. 99.1, 99.5, 99.1, 99.9, 99.1. It reads like a stock ticker in a day traders office. No real trend just a little up from yesterdays trading. Tomorrow we hope that it starts to taper off and fall back down to normal. None of us want to go any where near the hospital this weekend. Other than a slightly faulty thermostat he had a good day. 

Thursday, February 26, 2009

No and Un-uh... Day 106 26FEB09

Joshua got a no and an un-uh today. No he currently does not qualify for next weeks chemo and un-uh we are not going to Universal Studios.

His ANC is down to 129. His HGB and Platelets went up to 7.9 and 169 respectively and are doing okay.

He was pretty bummed about not being able to go on Saturday. We hate having to tell him that because of something he absolutely cannot control he is not going to be able to do things. We often have long discussions and weigh the risks of taking him out in public. 

Caution always prevails.

Josh was really tired again today. He fell asleep cuddling with me on the couch early this evening. We are watching him rather closely this week because this is the period where somnolence could affect him. Somnolence can be a side effect of the cranial radiation that he got six weeks ago. He may sleep for long periods of time for several days. Yesterday was the six week mark, so we will see what happens.

New short term goal for Joshua is to get his ANC to 750  by Monday so he can qualify.

Wednesday, February 25, 2009

Day 105 25FEB09

Joshua is doing okay today. A little less tired and not quite so much pain. He had  a nice talk with his friend Larry in Louisiana today. His appetite is staying pretty good this time around and he is not having so much trouble finding foods he likes the taste of. 

First thing in the morning it is off to the clinic for labs to see where we stand. Two goals in sight right now: Universal Studios on Saturday; qualifying for chemo next week. Good numbers bring both. Definitely a case of good and evil...

Tuesday, February 24, 2009

Vincristine Blues... Day 104 24FEB09

Joshua is singin' the Vincristine Blues today. He had a rough day starting this morning with no energy and a pain in his neck. He spent most of the morning curled up in our bed with a heating pad. By this afternoon he seemed to be feeling better and had some of his energy back.

We have another milestone to reach in our journey. Next Tuesday Joshua has to qualify again with an ANC of 750 and platelets of 75 to begin the next phase of his treatment. We go back on Thursday for labs so we will have an idea of how he is doing so far. His platelets were real good on Monday. Hopefully they stay up.

The Tooth fairy did come last night and traded Joshua's tooth out for cold hard cash money. He was happy:)

Monday, February 23, 2009

Tooth Fairy alert... Day 103 23FEB09

Guess who lost his other front tooth this evening? Thank goodness his platelets are up to 159. 

Josh had school this morning and then headed off to the clinic for chemo. His platelets are up and his ANC is down to 320. His hemoglobin is down as well to 7.4 and he may need another transfusion this week. We go back to the clinic on Thursday for labs to find out. Joshua got his Vincristine as well this afternoon. Now we wait to see if he can qualify next week for the next round of chemo drugs.

Renee said that almost everyone at the clinic today was with us at the retreat the day before. Small world. I guess we all had to get back to "normal" today.

For now we are back on germ patrol and hoping that his counts stay up so we will not be delayed again. We also have a chance to take him to Universal Studios on Saturday with the Starlight Foundation if he is well enough to go.

Sunday, February 22, 2009

Dream Delivered... Day 102 22FEB09

There is tremendous, earth shaking power in the smallest and most beautiful things. Children with cancer. I was humbled by the amazing children we spent the last four days with. The depth of their faith is unfathomable, their love is without boundry and unbreakable, their strength is absolute. You, my little brothers and sisters, are the most amazing creatures on earth and you will all be in our thoughts every day.

We met so many wonderful families who are dealing with the same types of fears and pains that we are. We had a chance to share our experiences and our thoughts. We all have a bond that has been forged by our children. Together we become a strong chain that provides a safe anchorage for a few days in the middle of the raging tempest we live in. Apart we remain strong, each link tempered by the thoughts and prayers of our new friends.

We were honored to share in their lives for a few short days,

the impact will last a lifetime.

Deliver the Dream is a wonderful organization, please check out their website. They have retreats like the one we attended all through the year for other children and their families. The volunteers, who made our weekend the special experience that it was, are amazing people. They give of their own time and love in the service of others. There is no greater good.

We now return to our "normal" hectic life. This weekend provided all of us an opportunity to rest and play, and to forget about all the craziness that defines one of our usual days.

It flat wore us out, in a good way.

We were really tired by the time we got home, the events of the weekend finally caught up with all of us. We spent the afternoon crashed out around the house in different places: Josh in Pa's lap; Jarrod on the couch; Dad in his hammock.

Tomorrow Joshua has school in the morning and then he is off to the clinic for Vincristine and labs. We are hoping that his counts stayed up over the weekend and that his platelets are holding steady. He had some bruising on his legs this weekend and we are hoping it is not an indication that his platelets are low again.

Day 101 21FEB09

There is no mountain he cannot climb.

There is no mountain that our Joshua cannot conquer.

There is no obstacle too high.

No expanse to wide.

Our Joshua is strong.

We had another wonderful day here at River Ranch. The morning was a little tough for Renee and I. we were part of the parents discussion group. It is an experience that you can only truly understand the gravity of if you are a part of our ragged bunch. It is a chance for us to share our children's diagnosis and the circumstances leading up to it. It is a chance for us to feel each others pain, a moment for us to cry for each others babies. A chance for us to heal each others broken psyche just a little. It is a powerful and dare I say, precious time.

The rest of the day was much happier. The kids and the parents got to go out into the beautiful sunshine and rock climb, bungee jump, and cheer the kids on. Josh was almost like his old self, scrambling up the rock climbing wall, bouncing on the bungee while hanging upside down. Jarrod climbed and made it to the top numerous times. Even Mom and Dad climbed and triumphantly pushed the buzzer at the top of Mount Portable. We even got a game of miniature golf in and Josh got a hole in one to match the one Jarrod got last night when they played. The final score was one stroke apart between them.

We did tie-dye! Jerry may have left us but tie-dye is still so cool!

The afternoon was a time to rest and get a little time in at the pool. The weather warmed up and it was quite comfortable.

Night time was Rodeo time! Neither one of the boys have ever been to a rodeo before so it was a great experience for them. They both really liked the bull riding and were so excited.

Tomorrow we head home back to our normal lives...

Saturday, February 21, 2009

DAY 100!! 20FEB09

We are officially dudes, not like Lebowski, but like the cowboys. We are a wonderful ranch in central florida with a bunch of cool families who are also cancer families.The ranch, all 1700 acres of it, is located outside of lake wales on the banks of the kissimee river. It is a full working ranch that even hosts a sanctioned rodeo ever weekend. So far we have taken a hayride, had a campfire last night, been fishing, gone horseback riding, and have met some really neat people.

We started out this morning at 6:30 with a fishing trip down at the river. Man it was windy and very cold. Josh managed to catch the first and biggest fish of the morning. I got to be the official worm wrangler and fish remover. Good thing about it being so cold is if you stick yourself with a fish hook you don't feel it.

After breakfast we went over to the stables for horseback riding. Jarrod has never ridden a horse before so it was a special treat for him. It was really beautiful and we had a great ride. Unfortunately Joshua was too little to ride a full size horse but he did get a pony ride instead. We spent the rest of the morning at the petting farm and just relaxing a little bit. After lunch we played games and had an art afternoon. This evening we, the adults, got to get a massage while the kids had a DJ hosted dance party. While we went back to the room Jarrod got to stay up for teen movie night. A busy but really fun day.

I have so many pictures that I have decided to post them to Flickr. Stop by and take a look.

Friday, February 20, 2009

Day 99 19FEB09

Jarrod turned our kitchen into a commercial bakery/industrial accident site this morning.You could have run a city off of his enthusiasm. He loves to bake stuff! I must admit that the house was swirling with the most delightful essence of cinnamon all morning like a fragrant fog rolling in off the ocean. The results of his labor. Delicious.

Joshua started off the day with a platelet count of 29, much lower than it was on Monday. The nurse said either the transfusion he got didn't take or that the PEG really knocked it down. So he gets another transfusion of platelets today. Another bag of cells donated by a faceless, nameless person that will keep him alive. His ANC is up to 990 which is a good improvement from Monday.

We are on our way this afternoon to River Ranch in central florida for 4 days of fun at a real dude ranch. We will be blogging as we can.
We are at camp with the kids. We will post pictures and an update later today.

Wednesday, February 18, 2009

Day 98 18FEB09

This was not one of Joshua's best days.

He slept until 11:00 am, right before I left for work. He was really tired.

He had a tough time with school today because he is having difficulty focusing his attention and remembering things. He was also complaining of aches and pains in his neck and his head and was generally in a pretty bad mood all day. I am pretty sure it is a combination of all the things that he had done to him on Monday. His legs are also still bothering him, symptoms similar to restless leg syndrome.

Joshua and Jarrod can really get on each others nerves when they want to, and today they wanted to. Which means they are no fun to be around. Renee had a tough day.

Tomorrow he goes to the clinic first thing in the morning to find out how his counts are doing. Hopefully he will be at a point where we can take him to camp tomorrow afternoon. We need good numbers for his ANC and Platelets or we may be forced to scrub another trip.

Tuesday, February 17, 2009

Day 97 17FEB09

What happened today you ask?

Not much really.

Joshua is doing pretty good the day after his full service appointment yesterday. A little tired and not his usual appetite but that is to be expected I think. He did his school work with Ms. Lydia this morning and then spent the rest of the day playing and relaxing around the house. Tomorrow is more of the same.

If all goes well we will leave for the River Ranch on Thursday afternoon. We will be Dudes for a few days since we are going to a Dude Ranch. The kids and us are certainly looking forward to a break from our "normal" life. More to come on the whole trip...

All we wanted was the oil change... Day 96 16FEB09

Ever go to one of those quick oil change places? You know, where the sign out front guarantees an oil change in 30 minutes or the next one is free. You pull up and hand your car over to a greasy kid in blue coveralls and go take a seat in the waiting room in one of those hard plastic chairs.

Fifteen minutes later the service manager comes in and says something like this, "we were draining your oil and noticed that the viscosity is beyond prescribed levels and recommend you get an engine flush, also your air filter is occluded and needs to be replaced per the manufacturers suggested schedule, oh and your cabin air filter is causing a restriction in the venturi pressure of your A/C. You want us to replace those, right?"

Dumbfounded you nod yes and sit back down.

Four hours later you are still stuck in the hard plastic chair, mostly because you have lost the feeling in your legs, staring at a TV mounted so high up in the corner that you neck may be permanently bent at an awkward angle watching re-runs of Jerry Springer and Montel. Meanwhile sixty other cars have been run through the lube rack in under 20 minutes while yours languishes away. Finally your car is ready and you stagger out into the sunlight and head home, your day totally spent.

This is the kind of day Joshua and Renee had.

Joshua's CBC came back with his ANC at 682, his Hemoglobin at 5.5 (7.1 is the transfusion point) and his platelets at 34 (in the range where a simple nose bleed could be really messy).

So he got the full service 30,000 mile special.

A platelets transfusion, a red blood transfusion, his port accessed, blood drawn, CBC, Vincristine via IV, and PEG.

The works.

Nine hours after he got to the clinic he and Renee finally re-emerged and came home.

How does one react after having spent all day being poked and prodded, transfused and infused? I know how I would react, with torrid vituperation. But not our Joshua, how does he react?

How about with a smile.

Through it all he kept his head up and rode it out. I am amazed at how he keeps going.

His legs are still getting weaker from the Vincristine so now he is going to have physical therapy and he will wear braces on his legs at night. This will help keep his tendons from shortening and interfering with his ability to walk normally. He goes back to the clinic on Thursday to see how his platelets are doing as they only last for three days.

Sunday, February 15, 2009

Visits are great fun... Day 95 15FEB09

Joshua got a chance to visit with his mom's cousins John and Yvonne Bensinger from West Virginia this evening. They are visiting the Bay area and were at Mary Ann's house for dinner. We all got a chance to eat a great meal and visit with them. Josh always enjoys playing with his cousins Avery and Taylor. All in all it was a fun evening for everyone and boy did we eat too much:)

Tomorrow Josh will be at the clinic first thing in the morning. He is getting the full treatment, Vincristine, PEG (that is the shots in both thighs), labs, and maybe a transfusion depending on his CBC results. Renee noticed that he was looking pale tonight but his energy levels have stayed up so we are hoping that his counts have been hanging on. This is his second round of the same chemo regimen and this time he has done much better. No fevers and he has maintained his stamina and appetite. Yeah! Much better than the alternatives. We always celebrate the good days.

If you can get three kids to watch a 3 inch screen why do we need 50 inch televisions?

Saturday, February 14, 2009

Day 94 14FEB09

Renee looking pretty and our handsome Jarrod on their way to dedicate the new church at St. Annes. Renee got up in front of 1900 people and made a speech and Jarrod was part of the altar server team. They both did great. Joshua and I stayed home to avoid the large crowds.
Joshua really enjoys playing games on Jarrod's computer when he can.

Jarrod had to interview the family for a school assignment the other day, so he dressed up and interviewed us all. Put this boy on camera!

Joshua had another day without issue, he is still holding in there. I am hopeful that when we go back to the clinic on Monday his ANC will still be high and he will have ramped up his RBC and HGB all on his own. Until then we just wait and keep our fingers crossed.

Friday, February 13, 2009

Day 93 13FEB09

For Friday the 13th this was a good day. Joshua, who is still doing well so far, spent the afternoon at Renee's parents. He got to take a walk on the beach and do a little fishing. He even caught a fish, that changed size three times while he was describing it to me on the phone. Even though his RBC counts are low he has kept up his energy and has not slowed down much at all.

Thursday, February 12, 2009

Want to see a trick? Day 92 12FEB09

I took Josh and Jarrod to the park this evening for a little while. This is how it went: Joshua would run up to a group of kids he knew; pull up his hat; say "I'm bald"; put his hat back on and see how they reacted; then he would move to a new group and repeat. I watched him do this until all the kids on the playground had seen his head and he could start playing. It was nice, although I was a little nervous, watching him play like he did before he got sick. He is more cautious than he was before when he would throw caution to the wind and climb on anything no  matter how high. But for a little while this evening he was just the bald kid on the playground.

We finished this weeks round of chemo today and Josh got his port de-accessed. The new dressing seemed like a success, it was much easier to remove. He now has  no needle pass until  Monday when we start all over again.

Wednesday, February 11, 2009

The power of protein... Day 91 11FEB09

After home school this morning Joshua went to the clinic for a CBC. His ANC today? 1010. A big jump from Monday's 640. We think the main difference this time is the fact that he is taking the Zofran and eating, as well as he did not get a dose of Methotrexate this time. Whatever the reason it is great to see his counts recover without a stay in the hospital involved. He is still borderline for a red blood transfusion with his HGB at 7.3 but we are holding off for now.

His reward for such a good ANC? Money? Fame? How about mom taking him up to the park for the first time in forever and letting him play a little! Today was a beautiful day to go, about 84 degrees with a nice breeze. Renee said that the kids were a little stand offish at first especially when Josh took his hat off. But that they warmed up to him pretty quick. She said he spent his time walking around and talking to different kids. I think it was a chance for Josh to see how other kids who are not a part of the cancer family would react to him. If only we as adults could overlook the differences of others so easily the world would be a friendlier place.

Tuesday, February 10, 2009

Sticky business... Day 90 10FEB09

Today was at least uneventful. Jarrod and I worked on his math lesson, scary how all of the stuff you learned in seventh grade comes back to you pretty easy. I mean when I was there Grade VII was chiseled into the door. But come back it does and it gives you a chance to pass on the knowledge to yet another generation. My God! I really am getting old. Oh well, geometry is cool!

Joshua worked with Renee on his school work and had it knocked out in no time. His appetite is staying up this time and with the help of Zofran we are getting several good meals a day into his tiny little stomach. Every little bit helps him keep his counts from dipping to fast. He will be back at the clinic tomorrow for another CBC to see if he needs a red blood transfusion. 

This is what our daily dose of chemo looks like in case you were driving yourself crazy trying vainly to envision it in your mind. I know, nobody has really been trying to do that. But I thought I would share. We had to do a dressing change as well and Josh is doing much better with the whole evil sticky adhesive thing. 

Want to mold a kid to your will? Use Tegaderm. You might as well super glue saran wrap on your child. It is that hard to get off. I kid you not. You could patch a boat hull with this stuff.

For those of you who are lucky enough not to have to mess with such things, Tegaderm is a clear adhesive film that covers Joshua's port when he is accessed. We use a lot of Tegaderm.

We are experimenting with a new type of occlusive dressing to see if it comes off easier. It is something the pharmacist recommended. Hope it works...

 It used to feel really weird to give him his chemo, but now it is just another part of our daily routine this week.

I got a chance to escape for a little while tonight and catch a lightning game with my good  friend Dr. Jim. 

The game was good,

they skated,

they took shots on goal, 

we cheered,
they got bum calls from the ref,

we booed, 

they lost.

I would like to take this opportunity to apologize to the Lightning team and their fans. You see, it seems every time I attend a game they lose. This has been going on for several years now. I am sure that they lose when I am not there as well but if I go, it is assured.

But it was still fun to watch. He has awesome seats! Center ice!

Monday, February 9, 2009

We are on that slippery slope again. Joshua's ANC is down to 640 and his RBC and hemoglobin are right on the edge of transfusion land. We knew his counts were dropping, he always gets cold and can not warm up when he starts getting low. His energy levels are still good so they are holding off for now on the transfusion. He will go back Wednesday to get another CBC and see what his counts are then.

His chemo was quick and he said getting his port accessed was no big deal this time. He told me before he left for the hospital, "I am not going to cry today when they access my port." He is such a brave little guy. I think his t-shirt about sums it up. It reads, "Danger is my middle name."

Sunday, February 8, 2009

Day 88 08FEB09

Crazy eighty-eight.

I know what you are thinking, it's Sunday, why are the boys doing school work. Around here we get work done whenever we can, you never know what tomorrow might bring. Joshua and I did his school work out on the deck, the weather has turned that nice already. Jarrod did so much thinking his head hurt and he was wearing an ice pack.

Actually he bumped his head on the bottom of his desk. Nothing serious.

After Josh got his homework done we got a chance to log some serious h-time. We love that old hammock. I firmly believe everyone should own a hammock, they are one of the man's best inventions. Truly a wonder of the world. Okay, well, maybe not a true "wonder" of the world. Not exactly like the Hanging Gardens of Babylon or anything. But mighty comfortable. Almost mystical. Josh and I cuddle and we talk about things, sometimes we talk about what is going on, but mostly we just enjoy being close and we talk about things, tangents really, that interest us at that particular moment.

It's wonderful to have those rambling non-sensical conversations with your child. No lessons to teach, no ethics or mores to reinforce. Just thoughts and ideas to share. Life was good today.

Tomorrow we are back at the clinic for Joshua to get his port re-accessed, labs done and another, seemingly endless, round of chemo started. We are getting a late start because he has school in the morning. If all goes well he should be home before dinner.

Saturday, February 7, 2009

Heroes... Day 87 07FEB09

"I can't really play with my toys because I am always at the hospital." What a profound and sad statement issued by Joshua today as he was picking up toys in his room. I am sure that his how he feels sometimes.

Today was a day to enjoy the fact that is not that cold outside anymore, after all it has been 24 hours since the temperature was below freezing. High time for it to get back to the point where you can go outside in a pair of shorts and not be trying out for some arctic reality show.

Miss laura came to spend some time with us this evening and brought Joshua and Jarrod a cool Indiana Jones Lego kit to build. Those boys just love putting together lego's, and they can do it amazingly fast.

Oh yeah, the Super Heroes sign. That was a gift from Miss Laura and her husband Frank. He found it at work and brought it home, on his bicycle no less, for Joshua.

Joshua really does qualify as a superhero: he is brave; he is strong; he can throw up and go right back to playing with his brother; he goes through all the pain and suffering of his treatments and can still melt ice with his beautiful smile; he is not angry about having cancer. Yep, my boy is definitely a superhero.

Things continue to go okay for Joshua, other than a little stomach trouble this morning he has been doing well. Renee thinks that he has been getting an upset stomach and not telling us about it, he definitely knows that Zofran works for him. Thankfully the nausea has been minor and he is still eating well.

I found out tonight that another child, a little girl, named Jessica Rose Kohut died on friday. She was fighting Neuroblastoma. Our prayers go out to her family.

Friday, February 6, 2009

The ice age recedes... Day 86 06FEB09

This is at 7:00 this morning as I was going to work. Thankfully the temperatures are starting to rise up a little. A few more days like that and our electric bill is going to be in the four digit range. Supposed to be up to 80 next week! What a weird and wacky planet we live on.

I understand Joshua got to talk to his Louisiana buddy Larry today. I know that he misses his friend. 

I was gone today so I don't really have much to relate about the happenings around the house. Josh had a good day and is fever free. Yeah! Christian and Jamie came over to visit. I found leftover chinese take out in the fridge. There was an empty  bottle in the sink. Almost sounds like they had a party while I was gone...

Thursday, February 5, 2009

Day 85 05FEB09

This is what happens when it gets cold in Florida. Our kids faces disappear. Our record cold snap is continuing and we spent the day throwing pottery shards and Legos around the yard to confuse the archeologists who find us after this ice age recedes. 

Tonight was family night at the Children's Cancer Center. We had a really fun time and a great meal. It was less traumatic this time, we kind of knew what to expect. It is comforting to hear that other kids are doing okay, or having the same kind of daily struggles that we have. It rips my heart out when the talk turns to little ones who lost the fight. The demons are always lurking at the edges of the shadows just waiting for a chance to forage. Yet it is a good thing to be remembered. 

Joshua got his port de-accessed today after his last chemo treatment, for this week. He gets to stay needle free until Monday when we start up again. He is getting much more comfortable with the whole process and it was much easier to accomplish this time. Pretty soon it will all be old hat. That is a scary thought, but I imagine there will come a time in the not too distant future that Joshua will not even bat an eye when they access him. 

I must tell myself, port evil good... port evil good... maybe with practice.

Other than the normal reactions he has to chemo Joshua has been doing well this week. We are crossing all that is not frozen that no fever is lurking in the wings.

Wednesday, February 4, 2009

Heat pump. Why do they call it a heat pump? When it gets really cold outside, like tonight, it doesn't pump much heat. Tonight's weather; 23 degrees, freeze watch, hard freeze warning, wind chill advisory. We will manage to stay warm, I am afraid the flora and fauna of Florida may not fair very well. As I scan through the weather it appears that it is pretty much cold everywhere tonight, I hope all of you stay warm.

I still can not get used to the fact that, sometimes, right before I go to work I have to give my child his chemo drugs. It seems normal enough, strangely, when we are at home. 

But when you get to work and people ask, "how is your day going?", it gives one pause. "Okay I guess... Josh is tolerating his cytarabine today and the zofran seems to be working, how about you... " 

Instead I usually reply, "I've had better years... you?"

We believe that Good Year is searching for Master OU PU a close relative of our own Master PU. If you have any information as to his whereabouts please contact Good Year directly.

Tuesday, February 3, 2009

Day 83 03FEB09

Josh is working on a painting and wanted to make sure that everyone knows... He is not finished yet.

Josh is back home and doing well so far. He will be getting chemo at home this week and next week. His ANC was 1031 this morning, already slipping back down into the pit. He scrambles and claws his way to the edge only to get knocked back onto the scree. Such is the way of cancer treatments. Last time we did this same cycle of meds we wound up back in the hospital with a fever. We are hoping this time will be different.

Our latest wrinkle is the weakness in the front of Joshua's legs caused by the Vincristine he gets. It affects the muscle that keeps his foot up when he picks up his leg. The weakness causes him to drag his foot and trip rather often. It is a condition that will go away when he stops taking the Vincristine. Which unfortunately he will not for quite some time. I know it is frustrating for him, he is used to having great balance and being very agile but he is coping so far.

I spent the day wading through the cyclone that is medical billing. No wonder our healthcare system is failing. Nobody speaks the same language, I could get an audience with the Pope easier than I can get information from the state of Florida and the world is now hiding behind automated attendants that are really a front for a black hole. I mean the automated attendants now have the audacity to hang up on you if you don't like the options they offer. None of which address the question you have in the first place. This is after they spend three minutes telling you  "hey dummy, you could find all this out for yourself on our website (which really will not address your questions either), quit wasting our time calling us with your stupid questions. And by the way... Have a nice day. CLICK..." What happened to all the people?

Back on track.. Day 82 2FEB09

Back on track at last. Joshua qualified for chemo with his ANC at 1352 and his platelets over 300. Its been an uphill struggle to get here but he has arrived. So begins another round of chemo. We start chipping away, once again, at the leukemia cells hiding places making sure we hit every little nook and cranny. Joshua's spirits are good and we are relieved.

Jarrod in a show of solidarity, spent the night with Josh. He doesn't seem to mind sleeping in the straight out of the inquisition lovely sleeping chair. Jarrod is such a caring brother and takes really good care of Josh. This experience so far has strengthened the bond between them. We are so lucky to have an 11 year old that would rather play with his little brother instead of sulk in his room or play video games or ???... He is truly a wonderful progeny.

Are these the coolest slippers or what!?

*In a side note. I polled my class tonight about their impressions of the ads that ran during the superbowl. You know, the ones that cost 3 million dollars for 30 seconds. The consensus? They didn't think they were very good. A question for corporate America: How many people have no idea what a Coke is? or a Pepsi? or a Budweiser? How much rice could you buy for the same amount of money? How much medicine could we provide to sick children? Food for thought.

Sunday, February 1, 2009

Coolsville USA - Day 81 1FEB02

We, my friends, are the coolest cats on the planet. We are total throwbacks to times past. We are 3D movie kinds of guys. You know, all those great sci-fi movies. The highlight of the evening for us came not on the field of play but in the form of a 3 million dollar ad for a movie and lizards... in 3D! It was a cool ad.

Tomorrow we try again to get Joshua back on his treatment plan. He has to have his ANC at 750 or above and his platelets need to have stayed up. If he qualifies it means another nights stay at the hospital , but it is only one night this time.
It means another round of chemo, one more thing to cross off of his treatment roadmap. 

It means another night of our family living like gypsies spread out across the map.
It means we are one step closer to curing Joshua.

Tonight I leave you with a self portrait from the man himself.

* We need more 3D stuff, it's cool!