This is how we roll... Day 197 28MAY09

Joshua and Jarrod wanted to go bowling, so we went bowling. We took them to the lanes that are not far from home early in the day when the bowling alley was pretty deserted. We walked in and asked the kid behind the counter if we could have a lane as far away from other people as possible. It is amazing that when you have a bald kid with you people don't ask too many questions. The boys had a great time bowling and did very well. Much better than I did. Renee as always beat us all soundly.

After I went off to work Renee and the kids went over to Jim and Sally's for dinner. Jim got a new smoker and he was dying to try it out. I hear the results were quite tasty. Master Jayden came over for the evening so Joshua and Jarrod could practice their Uncle skills. They are both going to make great fathers some day.

Joshua was overly tired this evening as he comes off of the steroids. The lack of sleep is catching up with him pretty quickly. I am hoping that he gets a good nights rest and can begin to feel better tomorrow.

Fruits of their labour... Day 196 27MAY09

Crews were hard at work today putting the finishing touches on the new LEGO police command center. After a careful inspection by the project managers it was officially opened for business. If you look closely you will see a coffee maker in the break room as well as a microwave. This thing is amazingly detailed and well equipped. Joshua and Jarrod had a great time putting it together. They amaze me with their respective building skills.

Today was Joshua's last dose of dexamethasone. We all breathed a collective sigh of relief. The steroids have really done a number on our little guy. His batteries ran out just after dinner and when they run out he just shuts down. Unfortunately the steroids also make him wake up every two hours or so all night so he barely gets any rest. They should be out of his system in the next 36 to 72 hours. We will be hoping for an improvement starting late tomorrow. Our next hurdle is to qualify for the next round of chemo this coming Wednesday. Hopefully his counts will stay up and he will not get delayed.

Construction re-starts... Day 195 26MAY09

After a delay waiting for materials to arrive from an outside vendor construction has been re-started. Project leaders Joshua and Jarrod gave the green light this evening for crews to start back to work. Investors were pleased at hearing the news and the project leaders assured them that the project would remain on schedule.

Joshua's visit to the clinic today was good. His counts are strong with his ANC over 1000 and his platelets over 400. Not the low counts we were expecting. Of course his counts can be like the stock market, up one day and down the next. For now they are up. After talking with people at the clinic we are pretty sure the lack of energy and insomnia are a result of the steroids he is taking. He will finish this round tomorrow but we are not sure how long they will take to clear out of his system. So far in his rounds of chemo the steroids have been the drug that causes him the most problems. From the rampant hunger on the prednisone and fluid retention to this latest round of side effects. He spent most of the day resting and had a really hard time with his lower back hurting for a while. Tylenol and a round on the heating pad seemed to help quite a bit. After dinner he worked on his LEGO's for a while and then went back to resting and cuddling with Renee.

Today was one of the days when I am just tired of Joshua being sick. It happens time to time. It is all just so unfair for him to be going through all of this. I just want it to end. I know and I remind my self that this is only the beginning, we have many years left to go. Lots of unforeseen obstacles to face. I know that tomorrow things will be back to "normal" and that this feeling will have passed. But for tonight it weighs heavy on my heart.

Sleepy... Day 194 25MAY09

Josh spent most of today sleeping. He woke up at 3:00am and stayed up until 5:30 or so before he went back to sleep. One of the side effects of the steroids is insomnia and we think that is what is happening. He sleeps fitfully and will wake up at the slightest noise. We have decided to take him to the clinic first thing in the morning to get his counts checked, both us think he probably needs a transfusion. But the labs will tell us for sure. He has just not been himself this weekend and both us are a little concerned. With any luck it is just the cumulative effect of the chemo and his counts are okay. If not he can get what he needs to start feeling a little better. It is really hard when he is so totally wiped out.

Family... Day 193 24MAY09

This afternoon was a time for family. Jamie and Christian, and Bella, came over to spend some time with all of us. Joshua really enjoys when they come over. He played the Wii with Christian, no word on who won. Our granddaughter is coming along nicely and is growing quickly. Joshua spent time cuddling with Jamie and his niece to be and playing on the computer. He rested a lot.

Josh just can't seem to shake the cloud that has been hovering over him since he got chemo last week. He is fine for a little while and then the bottom drops out. Again today he spent the majority of his time laying down and cuddling. He doesn't want to be alone very much. He is still eating okay, I think mostly due to the steroids. His weight is holding steady, no drop from his high mark. But his energy is just not recovering. Renee and I both know his counts are still really low. He is a markedly different child when they are. Our continued hope is for no fevers or reasons to go to the hospital. We have already been at home for over a month and the lead between the current record and the previous one is stretching quickly. But these are the things you worry about when you have a cancer kid.

We go back to the clinic on Wednesday to get a CBC and check counts. In the meantime Joshua will stay on lockdown and continue resting.

Sandwiches... Day 192 23MAY09

Joshua is still hanging in there. He has been tired most of the day and pretty needy. He doesn't want to be alone very much. He spent most of the day cuddling with Renee and napping. His appetite has stayed good this time and he is even making his own food from time to time. It is fun to watch him make a sandwich in the kitchen, perched on top of his little red stool. Very precisely making the perfect sandwich. Only he can make them just right. I know his counts are still way down just by the way he is acting. So far the dreaded fever has not come to visit and we keep extending our stay at home record one day at a time.

A little less rain... Day 191 22MAY09

Today was pretty much like yesterday only with a little less rain. Joshua's temperature has been hovering at 99 so far. He is still really tired and very cranky. The chemo and the steroids have definitely caught up with him. So now we settle in for a long weekend at home. All of us hoping that we get to spend the whole thing here where we belong. Holidays have historically been very bad juju for us. Let's hope this time is different.

Joshua got a visit today from Haley and her mom who brought over a luscious dinner for Renee and the kids. I have got to figure out how to be home when all the food shows up... It is a great help to Renee on the nights that I am gone and she is home alone with the boys and the leftovers are really good when I get home.