Not much today... Day 312 20SEP09

We didn't do much today. The boys played and did the kind of things kid do. Renee and I did a few little projects around the house. It was really just a day to kick back and catch up on our chillaxin skills.

As it is Sunday we had sushi as part of dinner. Joshua is still being very picky about what he likes to eat but we manage to find things to keep him happy.

In the morning Joshua is off to the cliic to get a CBC to check his counts and if he is still over 500 on his ANC we will restart his chemo. Hopefully all his counts have stayed up over the weekend and he is where he needs to be.

Cleaning up... Day 311 19SEP09

We started our day early this morning continuing a family tradition doing Coastal Cleanup. We have been going every year since Jarrod was Joshua's age. The kids really enjoy doing it and it is a wonderful way for them to directly help the environment. It never ceases to amaze us just how much trash and detritus people leave in their wake.

After running some errands we returned home just after Jamie, Christian, and Allie had arrived to spend some time with us. Allie gets cuter by the day and is doing great. We enjoyed our first day at home as grandparents.

This afternoon we all headed over or Avery's birthday celebration. Alecia had lots of good nibbles to enjoy and Joshua and Jarrod both played themselves completely out. It was really nice to see Joshua running around, at one time pretending to be a witch flying on his broom, the yard and enjoying himself. It is a marked change from watching him run up and down the hallways on the TCA at the hospital. I like this much better. He has been feeling good so far and will return the clinic on Monday for labs and chemo if his counts have stayed up.

Lightning strikes... Day 310 18SEP09

Joshua had a great day today. He got lots accomplished this morning before his teacher showed up for school. It was cute to see him playing in his room with the radio going and him singing along. He even managed to get it cleaned up and organized.

After school it was play time again until time to leave for the hockey game. The Children's Cancer Center got free tickets for tonight's game and called Renee to see if we wanted to go. I had to work so Renee took the kids with her Mom and Dad. They had a great night! Josh got a puck from one of the Atlanta players along with his friend Sean.

The kids and Renee were all over the rink even had a guest appearance on the JumboTron from the lightning bench.

Joshua gave an impromptu press conference from the Lightning press room right before hand.

All in all it was a great evening and a wonderful change from all the boredom of the past couple of weeks. To top it all off the Lighting won in overtime...

Escaped!... Day 309 16SEP09

I'm not quite sure if the doctors let us out because they thought Joshua truly is well enough to go home OR if they kicked us out due to all the mischief Joshua was getting into! The good thing is that Joshua's anc has reached 482 and we are back at home and not due to go into clinic until Monday.

Joshua was either bored, frustrated or just mad last night because he decided to do something that totally shocked his father and I. Late in the evening he asked me how to spell "cancer". So I told him. I asked him where he was writing the word and if it was in my journal. He said yes. I should have investigated a little more, but I was busy working on other things. When Lee showed up late last night to see Joshua and wish him a good night, he noticed where Joshua had actually written the word CANCER.

Drum Roll Please....................................Joshua wrote

CANCER SUCKS MOM
- JOSHUA
ON THE WALL OF THE HOSPITAL ROOM!!!!!!!

Inside I wanted to laugh and cry. He was right! Cancer does Suck. But then I wanted to strangle him because he wrote on the hospital wall and he even signed his named to it! I also knew at 11:30 at night I was the one that had to try and clean it off!
So this is what I told Joshua.....First, A little word of advice. If you are going to vandalize a wall which is totally wrong, don't sign your name to it. And Second, What were you thinking? Joshua, of course, was upset that he got into trouble, and he did realize that it was wrong. He has never written on a wall before, and if he would have written that on his bedroom wall at home I would have left it up!

Sometimes you get so caught up in the clinic visits, hospital stays, blood draws, port accesses, xrays, chemo, pills, platlets, HGB, WBC and every other thing that goes with cancer. that you lose sight of how your child is actually feeling deep down inside! Joshua is so brave and strong sometimes that he doesn't really let his true emotions show. If I had my way, I would let Joshua write Cancer Sucks Mom on everything he could. Cancer not only affects the child but the entire family. We not only have to deal with our child but the other problems that go with it, like trying to figure out whether we make the mortgage payments or buy food for the family. We deal with trips that are cut short or even canceled at the last minute due to fevers and the hundreds of hospital bills we receive. Our family is holding strong and the love and support that we receive from our family and friends is overwhelming sometimes. We are very grateful to have all of you in our lives.

I would like to remind everyone that the Month of September is Childhood Cancer Awareness Month. I know that times are tight but please consider contributing in some way to help the children and their families that have been touched with cancer. There are many wonderful organizations that we have mentioned in the past that have helped our family a great deal. Also, If you would like to make a direct donation to help Joshua we will be putting a donation link on the blog in the next week or two.

I would also like everyone to send out some very special prayers to our cancer families at St Joseph Hospital. Please include them all! This week has been very rough on a couple of families and when one family is affected, we are all affected. Please pray for all of our angels!

Almost there!!... Day 308 16SEP09

Joshua's ANC doubled over night and he is now 295. Hopefully tomorrow Joshua will be out of the hospital and back at home. He started out the morning with his port not working properly when it came time to draw labs at 4 a.m. He went later in the day to have a port study done. Joshua thought it was pretty cool. They injected a contrast dye into his port line and filmed it going through the line. He could see his heart beating and his lungs inhaling as it went. Joshua did a great job and he even got a special picture of it. I was just happy and relieved to see his beautifull lungs filling with air and his heart beating and no tumor in sight! The doctor came out right away and told me that everything was ok with his line. He could have had a small clot that was causing a blockage but it was working great now. That is a big relief. We don't want his port to start malfunctioning. It causes Joshua a lot of pain when they can't draw blood and they are pushing down hard on it. Also being accessed 4 times during a 12 day stay is a bit ridiculous.

Joshua was the grand prize winner at bingo today

Nerf Wars... Day 307 15SEP09

Joshua and Preston had a huge nerf battle this morning at the hospital. Bystanders described it as a hail of nerf darts raining down from all sides. Preston was in for clinic and brought all his nerf gear so he and Joshua could play.

Josh was supposed to get his first pentamidine treatment today but it was postponed until tomorrow. Hopefully it will go well and not take too long. This is the third drug they have tried as a prophylaxis against pneumonia. The first two had undesirable side effects, not that there are truly desirable side effects, so they were discontinued. But as they say the third time is the charm. Hope whoever they are know what they are talking about.

Another day pass was granted and Josh and Renee scooted on home for a while. It is a crazy life that we lead, all these comings and goings. While he was home this afternoon Josh got a visit from his new homebound teacher who will come in a work with him each week. It will be good for him to get back on a regular schedule of schoolwork, keep his brain exercising.

As his ANC only climbed to 128, although that is twice the one from yesterday, he is still stuck in the all too familiar holding pattern. With luck he will double tomorrow and keep doing so.

Day pass and dinner take 2... Day 306 14SEP09

Joshua got another day pass today and came home to do homework and generally just escape from the confines of the hospital. His ANC has dropped again to 68 so he still has to go back and spend the night. He has to hit either 500 or 14 days according to Dr. Tebbi this morning before he can get released to come home. So we are settled in yet again for the long haul and being a displaced family. We handle the logistics of being apart like the seasoned veterans that we are, it is the emotional part that really takes a toll on us the longer we do this. It has been really nice to have Renee and Joshua home these past two days. We have been able to eat together and sit together, talk and spend time with each other without the interruptions and distractions that plague us in the hospital. Tomorrow we expect more of the same. Joshua should get a day pass and be home mid-mornig. His new homebound teacher is supposed to pop in around three to get him started back on schoolwork. Meanwhile life goes on and we will hope that we are reunited on more than a temporary basis very soon.