Joshua's Story

Valentines on ice… Day 1185 14FEB12 Valentines on ice… Day 1185 14FEB12

2012-02-14T23:34:00.003-05:00

Happy Valentines day from all of us!

The boys spent the morning doing school and then playing a bit. Joshua was pretty sore, mostly his back, so he took it really easy this afternoon. Renee had to work the hockey game but luckily her dad had gotten really good tickets a while back so we got to go as well. We enjoyed watching the Bolts play but they got shut out which was a bummer. Coach had left us passes so we went down to the bench to meet up with him after the game. He came out and we talked for a bit and then he took Joshua back into the locker to see Stamkos who was making good on a pinkie promise to Joshua from last year. The promise was to get Joshua a copy of NHL 12 for the Xbox. It is special because Steven is on the cover of the game and he signed it for Joshua as well. Needless to say Joshua was all smiles from that point on :)

We headed home after that and it didn't take too much coaxing to get the boys in bed.

Lastly here are a few pictures from yesterday:

All smiles like always :)

Joshua with Jennifer the Queen of port accesses

A picture of Joshua in the paper with his pirate hoarde

Joshua and Leslie our favorite Child Life angel

First of the lasts… Day 1184 13FEB12

2012-02-14T00:43:00.003-05:00

Today was the beginning of the first of the lasts for Joshua as he is drawing closer and closer to the end of his long treatment road.

Renee and the boys got an early start to head into the clinic but now without making sure Joshua's port had his emla applied so he could get accessed for the last time. All of Joshua's favorites lined up to make his day go smoothly. His favorite port access nurse Jennifer got the ball rolling followed by and end of treatment discussion with Dr. O who originally diagnosed him and then Dr. Wynn did his final LP and bone marrow aspiration. Dr Wynn also did his very first LP and bone marrow which made it a nice bookend.

Joshua set a new and all time record of 1 minute 16.1 seconds before he entered the land of no dreams, he was very pleased with that:) While he was waiting in the day hospital Miss Leslie from Child Life came by with a bunch of presents from the clinic to help celebrate his last LP.

Joshua had to go back to the clinic to get his last dose of vincristine and then get de-accessed and sent home.

It was a very emotional day for all of us and it really signaled the beginning of the end of treatment. Joshua was a trooper like always and did great through all of the procedures. He was a little sore and understandably tired for the rest of the day but was resting comfortably this evening when I got home.

So we say goodbye today to the wonderful nurses of the day hospital who have always given Joshua the best of care and whose company we have always enjoyed, we say farewell to having chemo drugs injected into his spine, and see you later to bone marrow being drawn from his hip bone. We will have preliminary results from his marrow draw in a few days and the final results in about two weeks.

We also got to let the monster out of his cage for the last time! This week will be his last steroids pulse and come Saturday we can finally banish the monster once and for all. I don't think any of us will miss him at all :)

It's cold so let's skate… Day 1183 12FEB12

2012-02-12T20:55:00.003-05:00

The morning dawned cold here in sunny Florida. Thankfully no freeze last night so the plants should be okay. We hung around the house until lunchtime when we got a quick bite and then headed off to the rink for a skate. It was pretty packed but we all had a really vigorous skate and enjoyed ourselves.

We hurried up afterwards to get out of our gear so we could get home to meet up with Renee to run some errands. First up was a stop at the library to donate a bunch of books that we cleaned off of our bookshelves. Next we took Joshua in search of some new shorts and jeans, he has hit a growth spurt here lately and has outgrown all of his clothes. He is pretty pumped that he is getting taller and is already making plans to gain more altitude than me or his brother :) We managed to find some stuff that will work and then we headed for home to get some dinner and rest up a bit. The Bolts are playing the Penguins tonight so we all tucked in to watch the game.

In the morning Joshua is going in for his final full service appointment with labs, pentam, vincristine, an LP and a bone marrow aspiration. This will be his last LP, bone marrow, and vincirstine tomorrow!!

We are getting close to the end and are looking forward to a lot more "last" things to come around. He will be pretty wiped out for a few days but it is something he can now remember instead of wait for the next one to come up.

Cold snap… Day 1182 11FEB12

2012-02-11T21:46:00.001-05:00

Joshua's and the rest of us spent the day working around the house and playing a bit now and then. Joshua was feeling much better today and it looks lie all he really needed was few days off and some rest. The winds started blowing in hard after lunch and the temperature has plummeted with almost freezing temps expected late tonight. It has been the weirdest weather this winter. It is forecast to be back up to 82 by the middle of the coming week… crazy. The plants are covered, the turtle is safely in his house and all of us will be warm and cozy tonight. The boys and I are planning on skating tomorrow and Renee is planning on taking off for a little shopping and some time for herself. Should be a crisp day for both.

Mr. Social rests… Day 1181 10FEB12

2012-02-10T23:50:00.001-05:00

Joshua's social calendar finally quieted down today and he spent the day at home instead of out and about. Morning and early afternoon were predictably filled with school activities and I even got to get in on the fun with his science lesson for the week. After he got done he decided to rest for the duration of his day, he has been a bit tired today and I am pretty sure it is just the busy week catching up with him. He should be right as rain in the morning after a good nights rest. Our weekend plans are rather sparse as well so it will be a good time to get some things due around the house.

Mr. Social… Day 1180 09FEB12

2012-02-09T22:06:00.003-05:00

Joshua worked on school until after lunch and then got ready to go spend the afternoon on a play date with Carly. As you might imagine he didn't return home until well after dark and he had a wonderful time. They played inside and out and enjoyed the time together. What a great week he has had so far with all of the activities and special time with his friends. Once again there is nothing on the calendar for tomorrow but we will just have to wit and see what turns up :)

A night out with the boys… Day 1179 08FEB12

2012-02-08T22:23:00.004-05:00

Joshua did school work this morning and had a pretty normal day. After lunch Trent's mom called and asked if Joshua wanted to go to a basketball game tonight with Trent, Chas, and Trent's dad Charlie. Of course Joshua said yes immediately and began to count down the hours until they arrived to pick him up. We got him fed, dressed and ready to go and at 5:30 they knocked on the door and they were off. Renee was working the game and could see Joshua in the stands, she said he had a great time with his buddies and he was all smiles when he got home afterwards. I am glad he had a good night and got to spend some time with his friends. It has been quite a busy week for Joshua with all the school and sporting events :) Jarrod and I cooked a nice dinner and enjoyed a quiet evening at home together, he really is a lot of fun to spend time with. Tomorrows calendar is currently clear and includes no extra events… based on the week so far, give it time ;)

School and then the Kings… Day 1178 07FEB12

2012-02-07T23:28:00.002-05:00

For the second day in a row this week Joshua plowed into his school work and got a bunch finished. He worked until the middle of the afternoon and just after he got finished we got an email offering us tickets to go see the Bolts play the LA Kings tonight so we jumped on the chance. Renee had to work the game so we took care of dinner and such and then headed off to the rink. Our seats were at the very tip top of the forum but were right behind the Kings net so we had a great view of the action on the ice. The Bolts ultimately lost but we enjoyed watching them try and beat LA. We met up with Renee afterwards and she took Joshua with her and I got to share the ride home with Jarrod. It was a fun evening and we don't mind a little re-arranging to accommodate free hockey tickets :)

School time then play time… Day 1177 06FEB12

2012-02-06T22:37:00.000-05:00

Joshua got going on his school work extra hard today because Carly's mom had called to see if he could come over after Carly got out of school to hang out and have a play date. That got him motivated :)

He took off the same time Jarrod and I were heading out to try out a new rink to play hockey at. Joshua had a wonderful time and didn't make it back home until well after dinner and he was replete with stories of all the fun adventures that they shared today. THey played with the animals, played on the computer, went roller blading, ate dinner and then played some more. Needless to say he had a marvelous time.

Jarrod and I had a really great time checking out the new rink and getting a good skate in. We even got to play in a 4 on 4 game which was a blast! Jarrod skated great and we both realized we still have a lot to learn about playing hockey :) We headed home tired but smiling.

After we all got back together under one roof we settled in to watch a little tele before everybody wandered off to bed. Not bad for a Monday ;)

Super School Sunday… Day 1176 05FEB12

2012-02-05T22:12:00.002-05:00

Joshua got up this morning very rested after his long night's sleep which was great and we could really tell the difference. After getting some breakfast he settled in with Renee to work on school. They have been working extra days to try and get him caught up a bit. He did excellent today and got a bunch of work finished! It was great to see him moving along through his lessons and reading out loud to Renee. Jarrod and I kept a low profile to keep things quiet and minimize any distractions.

In the afternoon after he was finished we all rested a bit and just had fun doing our own thing. We watched part of the Super Bowl (the commercials and halftime show mostly) and then snuggled up to watch a little Doctor Who before sending the boys to the showers and then off to bed.

Goalie practice… Day 1175 04FEB12

2012-02-04T22:45:00.003-05:00

Joshua got up early with Trent who had to head home right after breakfast. He spent the rest of the morning and early afternoon counting down to the time we were supposed to leave. I had promised him a while back that we would go to a skate and shoot up at the rink and today was the day. He got all his gear together and when 2:20 rolled around we loaded up and left. He did really great skating as a goalie and I did my best to pepper him with pucks. We were both pretty wiped out by the time it was over and we made it back home. Joshua was so beat that he started to crash in the car and he only made it until the start of the Bolts game before he was out on the couch. I woke him up later to take his chemo and asked him if he wanted to move to his bed, he didn't even realize he had fallen asleep :) We moved him to bed and he was out like a light in a few minutes. It will do him good to get a good nights rest after all the activities and excitement of this past week.

Giggles again… Day 1174 03FEB12

2012-02-03T23:25:00.002-05:00

Joshua spent the morning sleeping after his long night yesterday, he didn't wake up until almost 11. He managed to get some school work done in the afternoon and then put together a sleepover with Trent who arrived after he got out of school. The giggle twins reunited! The boys, of course, spent the evening playing and laughing and generally having a good time. They were all asleep by the time I dragged in from school so I will have to wait until morning time to listening to them giggle :)

As a great end to a long journey today was Emma's last day of chemo! She is Trent's younger sister and we are all so very happy that her journey is over and she is cancer free!

Change of plans… Day 1173 02FEB12

2012-02-02T23:43:00.003-05:00

Our original plan of this evening was for Renee and I to meet to trade off the kids as I left work and she headed in to work, you know the two ships passing in the night thing :) I was then going to take the kids up to the CCC for family night. That was until right before she left the house we got four tickets to the hockey game against Winnipeg. After a quick reset our plans changed and we decided to do the hockey thing instead of the CCC, pretty easy choice for the boys and I. So we met up in the parking lot of our local Ikea store and exchanged kids including Joshua's friend Trent who came along as well. IT took the boys into Ikea to wander around for a while and then we got a quick bite of dinner before heading to the ice rink to watch the game. The game was intense and we made it to overtime before losing 2-1 :(

The giggle twins had a grand time and after conferring with Jarrod we have decided that at no point during the evening did they stop talking or laughing. Needless to say the boys had a great time and I am sure they will sleep well tonight.

Calendar for a cause… Day 1172 01FEB12

2012-02-01T23:13:00.002-05:00

After a normal day of school work and the like we all got a bit dressed up and headed down to a charity event called Calendar for a cause which was being put on by the Children's Cancer Center. Joshua had been asked to have his picture taken for the calendar several months ago and tonight was the unveiling of the pictures for each month as well as a fundraiser for the CCC. The event was held at the Tampa Yacht Club which was very nice. They had a big tent set up outside and the evening weather was just perfect. There was a great live band and lots of yummy foods all over the place to try. After we ate and visited for a bit we headed inside for the awards presentation and an auction of art work produced by cancer kids for the event. The CCC managed to raise a good chunk of money and Joshua along with Wojtek and several other friends got to walk the runway showing off the art as it was auctioned off. It was a fun evening although we were all pretty tuckered out by the time we made it back home.

A little school and a little hockey… Day 1171 31JAN12

2012-01-31T23:32:00.002-05:00

Joshua did school work most of the morning and got a pretty decent chunk out of the way. He is still quite a ways behind but still plugging along. The balance of the afternoon was mostly playing until right before dinner when we headed out to skate and play hockey for a bit. We got dinner on the table and then got cleaned up and ready to go watch some hockey. We got 4 tickets from the Pediatric Cancer Foundation to watch the Bolts take on the Capitals and we got together with Renee's dad to go watch the game. We had a great time and the game was fantastic with our Bolts coming out on top in overtime! The boys were pretty beat by the time we got home and headed straight off to bed. We had a fun evening together!

High flyers… Day 1170 30JAN12

2012-01-30T23:18:00.000-05:00

Renee had to go to an appointment up by USF so she and the boys left early so that they could visit MOSI for a little while. The boys wanted to do the ropes course again so Renee sat firmly on the ground while she watched them scurry around close to the edge of the atmosphere for a little bit. They had a blast and according to the boys they were "terrified" and wanted to know when they could do it again :)

Ania was nice enough to come over and pick up the boys so they could play with Wojtek instead of sitting in a waiting room with Renee. After she was done Renee stopped by and picked them up and they all headed for home.

Later in the evening Renee cut a deal with Joshua… she would trade him hockey practice time minute for minute for him working on his writing for school. Joshua agreed and he got to work, and afterwards he got his stick and pads and stood in front of the door blocking pucks for the same amount of time. Not sure if he will ever go for the same deal again but it worked this time around ;)

It is back to clinic for Joshua in the morning to get all his counts checked to make sure he is recovering from whatever put him in the hospital last week, we are hoping that everything has stabilized and he is on the mend.

Got results… Day 1169 29JAN12

2012-01-29T19:21:00.000-05:00

Renee checked before she left for work to see if any results had come in and they had. Joshua came back negative for walking pneumonia which is a relief. He still has a little cough but otherwise is doing fine. He will go back to clinic in Tuesday to get more blood work done to check and see how his counts are doing, they are also keeping a close eye on his liver enzymes which were very high when he was in the hospital. We are not sure what is causing this to happen and neither are the doctors, could be chemo related or something to do with whatever Joshua has been fighting off this past couple of weeks. He spent most of today resting and just hanging out at home. We ran up to the grocery store before the All Star game started and other than that we stayed here. The game was fun to watch and we all enjoyed seeing all the players doing what they do best. Tomorrow is back to work and school and we hope continued improvement in Joshua's cough.

Still waiting for labs… Day 1168 28JAN12

2012-01-28T21:53:00.001-05:00

Renee checked several times today but the lab results from the tests Joshua got on Friday still haven't come back. His cough is not getting any worse and he has been feeling okay so we are just going to keep an eye on him and wait for results. Joshua got some school work done before lunch time and then spent the afternoon resting. Renee and her mom painted some wine glasses for an upcoming CCC charity event and Jarrod and I went to help Renee's dad with getting the boat better situated on its trailer. So it was a full afternoon for all of us and we were all ready to relax after dinner and watch the skills competition for this years NHL All Star game. We enjoyed watching all the players compete and Steven Stamkos won the shootout challenge which made everybody happy.

Today was our good friends Wojtek's last day of treatment!! We are all so happy for him and his family!

Waiting for labs… Day 1167 27JAN12

2012-01-27T23:00:00.002-05:00

Joshua and Renee headed in to the clinic this morning to get him looked at by the doctor. They drew blood and did a really thorough going over. The doctor drew extra blood and sent it off to be checked for walking pneumonia which is one of the possibilities that they want to rule out. We will not have any results until tomorrow so we are going to keep an eye on Joshua's cough and wait until we hear back form the hospital. He is feeling fine and came home after clinic and jumped right into his school work. The rest of the day was pretty standard and everyone was curled up on our bed watching a show on the tele when I got in from work. I made it home in time to help tuck the boys in and wish them good night which is unusual on the nights I work. Our weekend is pretty open and we will probably just do stuff around the house.

Slow start… Day 1166 26JAN12

2012-01-26T22:42:00.001-05:00

Joshua and Jarrod got back to their normal routines today for the first time this week after our visit to the hospital. Renee said Joshua had a little trouble getting going with everything, he is still struggling to catch up. Afterwards the boys went to the grocery with Renee before coming home to settle in for the rest of the day. After I got home and had a bite of dinner we all sat down and watched a bit of tele before bedtime. Joshua still has his cough and low grade temperature so Renee is taking him in to the clinic tomorrow to get checked out.

Catch up day… Day 1165 25JAN12

2012-01-25T22:33:00.002-05:00

Joshua slept in pretty late this morning because I am sure he was exhausted after his hospital stay and all the activities we had yesterday. We all spent most of the day catching up on things including our rest. Joshua did some school work after he had breakfast and then we boys spent a good chunk of the afternoon working out in the garage while Renee did stuff inside. It was nice to be back to normal and have everyone at home. Joshua still has a cough and we are a little concerned about it, if it has not improved by tomorrow Renee is going to take him back to the clinic to get checked out just to make sure. His temperature has been running a bit high but not at the level where we really get worried, just at that level where we will touch his face or forehead frequently to check and see how he is doing. So far so good. Amazing all the little things that you worry about and fuss over when you have a kid with cancer, I wonder sometimes if we can ever go back to the way we were before his diagnosis… I seriously doubt it.

Back at home… Day 1164 24JAN12

2012-01-25T00:09:00.002-05:00

Joshua got discharged from the hospital this boring and made it home before lunch. It was great to have Renee and Joshua back at home where they belong. We spent the afternoon resting and doing stuff around the house.

Today is our wedding anniversary so we took the kids out to dinner at the rester aunt Renee and I went to on our first date and then headed off to the hockey game. We had gotten tickets a while back from the Pediatric Cancer Foundation and had planed to go for our anniversary. We go to meet a lot of the people that Renee works with and even take the kids to the desert bar to get some treats. Our seats were in with several of our cancer friends and we had good view of the ice. The hockey game was great and the Bolts won the game for our anniversary ;)

Afterwards we headed down to see Coach Raymond since he had left passes for us. He came out after a little wait ad we had a nice visit with him before heading for home. Not a terribly conventional anniversary celebration but it was just perfect for us.

So for now we put away the suitcase and hope that this was our last stay in the hospital and get back to "normal" in the morning.

Still waiting for discharge… Day 1163 23JAN12

2012-01-23T23:36:00.002-05:00

Joshua woke up this morning feeling much better but still running a low grade fever on and off. His lab results continue to come back normal and he has been staying busy and playing. I dropped Jarrod off at the hospital right before lunch on my way to work and popped in for a quick visit. The boys played together all day and even got to take part in a Gasparilla parade inside the hospital which they both enjoyed.

Beads at gunpoint... Arrrrr

Jarod driving a bulldozer around

Our newly found daughter Joshualyn ;)

Joshua got to be untethered today from his IV and only had to be hooked back up to get his meds. We are hoping that they will let him out tomorrow if his fever stays away through the night especially since it is our wedding anniversary. So far we have spent two out of the last three anniversaries in the hospital, hoping to spend this one together at home. Guess we will find out after rounds in the morning. He and Jarrod were playing on the computers in the teen room when I arrived after work to visit and pick Jarrod up. We got Joshua tucked into bed and said our goodnights and then headed for home to get some rest ourselves. It has been a long week so far...

364 days… Day 1162 22JAN12

2012-01-22T22:32:00.003-05:00

Joshua woke up this morning vomiting and running a fever of 101.4 which earned us a quick transition into gypsy mode after a call to the doctor. It has been 364 days since he was last admitted to the hospital and we are all sad that we almost made a whole year only to miss by one day.

His counts are good and so far all the tests including a chest X-ray have come back normal. His fever has been cycling up and down and was 100.5 tonight and he will likely have to stay in hospital unit his temp is normal for 24 hours. Not sure what is causing the fever, he started with a cough on Friday but was feeling fine and had no fever at all until this morning. We are hoping it is just some kind of viral thing that will clear up quickly. Thankfully his lungs are clear and the doctor didn't seem overly concerned about the fever. He is hooked up to fluids and getting antibiotics just in case it is something bacterial, we will have blood cultures in the morning which we hope will be clear like everything else.

Jarrod and I headed up to the hospital later in the day to visit and deliver a few things. As I walked around and visited with the nurses we know it struck me how although we have not been in hospital for almost a year it still feels the same, like we never left. I know we are all looking forward to the time that feeling is a distant memory. My dad stopped in for a little visit and we left together to head back home. So Jarrod and I will live our home gypsy lifestyle while Renee and Joshua do the hospital version. With luck it won't be long before we can all fall asleep in the same place. Until then we will keep each other close in our thoughts and hearts.

Sweet dreams bug, Jarrod and I miss you.

Only have to unlock it one more time… Day 1161 21JAN12

2012-01-21T23:15:00.002-05:00

We will only have to take the lock off of the monsters cage one more time after this round of steroids! Joshua finished up his pulse last night and although the effects are still lingering a bit he was already coming out of it this evening. The weather was pretty nice today so I spent a good portion of it getting some things done outside with a little help now and then from the boys. Jarrod helped me fix a tire and Joshua helped get some yard work done. After dinner we had a little campfire out in the backyard before the hockey game started. We all watched the game together and the Bolts won another one on the road which was great. Everybody was pretty tired by the end of the game and headed off to bed to get some rest.

End of the week… Day 1160 20JAN12

2012-01-20T23:22:00.001-05:00

Jarrod and Joshua did really well on their school work today. Joshua finished twelve lessons in total and worked hard all day. After they got finished the boys and Renee headed in to Brandon to get a game that Jarrod had been saving for and to look for winter gear for our upcoming trip to Maine. Renee found Jarrod a new pair of snow boots for only twenty dollars. He really likes them and they are definitely going to keep his feet warm and toasty. They headed home after shopping and I found them all glued to the tele watching the hockey game when I got home. I made it home in time to watch the last two periods and help cheer the Bolts to victory. It was a late game since they were playing in Dallas so the kids were already yanking before the game was over. Good thing they can sleep in a bit tomorrow morning :)

Family Night at the CCC… Day 1159 19JAN12

2012-01-19T22:22:00.002-05:00

The boys did their normal school route this morning and did okay from what I heard. After work I headed over to the CCC to meet Renee and the boys for family night. We had a relaxing dinner visiting with our cancer family and found out that we have quite a few families going to Maine the same time as us which is exciting. It will be awesome to share the experience with people we know so well. While the kids played downstairs all the adults headed upstairs to help paint wine glasses for an upcoming fund raising event. As always we enjoyed spending time with our extended family and hearing how all the kids are doing, with most of the reports being positive. One of our little friends is in PICU right now and having a hard time with the intense chemo regimen she is on as she prepares for a bone marrow transplant. Several other kids are getting very close to their end of treatment dates and we rejoice that their journey will soon be over. We were all pretty tuckered out by the time we got home and it didn't take any convincing to get the boys in bed and off to sleep.

Better school day… Day 1158 18JAN12

2012-01-18T22:40:00.002-05:00

Joshua did much better on his school work today, the fog seems to have lifted a bit and he was able to focus. Renee worked with him in the morning and then I got to do mythology and geography with him a little later while Renee helped Jarrod with an assignment. Later in the afternoon Jarrod and I took off to run some errands and on a whim we took a lap through the Goodwill store to see if we could find anything interesting, boy did we. Buried in the way back corner of the store JArrod found a really neat rolling drawer unit the was perfect for LEGO storage and it was only $8! He was thrill sand we rolled it up to the front, paid for it and rolled it through the rain to the car. We got it home and took it out into the shop to clean it up before bringing it inside. I think it will work out nicely for the boys and I am sure they will make goos use of it. To finish off our evening we all watched the last Harry Potter movie together and then it was off to bed for everybody. Tomorrow is back to work for me and then family night at the CCC which is something the boys always look forward to.

Bacon and Fanta… Day 1157 17JAN12

2012-01-17T23:08:00.001-05:00

This is the face of steroids first thing in the morning, bacon and Fanta orange soda for breakfast :)

Joshua loves bacon when he is on a steroids pulse and will gladly eat a pound and a half at one siting if we don't keep an eye on him. So far he has been doing okay with only one semi-major eruption today. He did much worse today on school than yesterday thanks to all the chemo and had a hard time staying focused. Tuesday's have always been challenging for him…

The rest of the day was pretty laid back, Jarrod and Joshua worked most of the afternoon and early evening on building a LEGO creation and that kept them occupied which is code for not fighting ;) After dinner and before the hockey game started we went out in the backyard and had a little campfire to get rid of some old wood that we had laying around. Boys love anything to do with fire and our two are no exception so it was a fun thing for them. We settled down afterwards to watch the Bolts play and were rewarded with their first win of 2012! The boys headed off to sleep after the game was finished and tomorrow we will see how much better Joshua can do at school, I have a feeling he will be much improved.

Good counts… Day 1156 16JAN12

2012-01-16T23:12:00.004-05:00

Joshua and Renee headed off to clinic this morning and the results are pretty normal with his ANC siting at 1624. He got accessed and got his vincristine push and then waited around a bit to get his breathing treatment before playing a little with the volunteers and then heading for home. They made it back right before lunch time and Joshua spent the rest of the afternoon banging out his school work. He worked well with Renee and they got it all done. Jarrod and I did some projects outside while they were working to keep things quiet in the house. Later in the afternoon we all went out in the street and put the goal down for a little hockey practice with Joshua tending the net. Dinner was eaten and then we all settled in to relax a bit before bedtime. The steroids are already coursing through Joshua's system and we had a few minor eruptions but nothing major, amazon how fast the drugs affect him. We are all hoping for a relatively quiet week and we will keep our fingers crossed.

Write, skate, play… Day 1155 15JAN12

2012-01-15T22:51:00.004-05:00

Renee had to leave extra early this morning to go work a matinee hockey game so I got up with the boys and we got our day rolling. First up was getting Joshua's grammar assignment finished which involved him writing a paper, not his favorite thing to do. We had a little bit of a rocky start but managed to get past his writers block and before you know it he had written almost two full pages! I was very proud of him and we took a picture to send to Renee so she could see how great he did.

We all had a quick bite of lunch and then jumped on the road to get a little ice time in at the rink. It was really busy but we all had a great skate and Joshua did really great, he never got tired and kept skating hard the whole session. We hurried off the ice and got out of our gear and back on the road so we could pick up Joshua's prescriptions for next week at the pharmacy before they closed for the day. We made it with time to spare and now we have a full supply of steroids on hand so he can start tomorrow… yeah.

Not long after Renee got home Taylor called and asked Joshua to come over to Renee's parents house to play so she drove him over while I was getting dinner ready. I went back to pick him up at 9 so he had several fun hours with his cousins. We got back to the house and us boys watched a little tele before it was time to tuck them away for the night.

Joshua has clinic in the morning which means labs, vincristine, pentam, and another cycle of steroids this week. Going to be fun :)

Kevin and his band… Day 1154 14JAN12

2012-01-14T23:50:00.001-05:00

We all got up early this morning and headed in to downtown to attend a special concert that the CCC was hosting. The event featured a guy named Kevin Sharp who is a country singer and cancer survivor. He shared his journey with all of us and we got to listen to a bunch of good music from him and his band as well. The event wrapped up around lunchtime and we headed home to get some chow and take a little break. Renee had to be at work at 3 so she left early in the afternoon and the boys and I spent the ret of the daylight time playing hockey outside and just hanging out. Jarrod helped me fix some dinner and then we all cuddled up on the sofa to watch a little Doctor Who before bedtime.

A bit more winter… Day 1153 13JAN12

2012-01-14T09:09:00.001-05:00

The weather started off cooler this morning and is expected to continue to cool off as the day progresses, nice to get a little bit more "winter" down here. Joshua jumped into his school work after breakfast and managed to get it done before Renee had to leave for work. Jarrod spent most of his morning taking his semester exam in algebra, which he passed :) Play time at grandma and pa's was the next order of business until Renee picked them up and we all met back at home. A rather busy day for all of us.

Writes… Day 1152 12JAN12

2012-01-13T00:06:00.000-05:00

Joshua had to do his Writes testing today which is where he gets a prompt and then has to write about the prompt. He didn't do very well this time and had a lot of trouble staying focused and coming up with anything to write down. We are still not sure what the root cause is but we will continue to try and figure it out. The rest of the afternoon was rather quiet until it was time for Renee to head in to work. She dropped the boys off at her mom and dads and I picked them up after I got done and got them home in time to watch most of the hockey game. We lost badly so that was a bit of a disappointment, a wish for better luck for our Bolts next time… As soon as the game was finished it was off to bed. Joshua is still having pretty major anxiety issues about Renee being gone and tonight was no exception. He wound up waiting for her to get home with me while I got some work done in my office. Poor little guy… too much stress for one so young :(

Unusual day… Day 1151 11JAN12

2012-01-11T22:22:00.002-05:00

Today turned out to be a rather unusual day full of surprises that were for the most part good things. Out of the blue yesterday the realtor that we had worked with last year trying to short sale the house called and said she might have an investor interested in purchasing our house. This morning she came over with said investor and they took a look around and then left. This was a particularly odd day for this to happen since this afternoon we were to meet with the Judge to set a sale date for the house. So Renee and I got dressed and headed to the court house to attend the hearing, we sat down at the table with the attorney from Bank of America and the judge and we told him about the potential to possibly short sale the house and I asked for an extension of the sale date which the judge granted immediately. This gives us another 90 days to try and work something out with the house and the possibility exists that we might be able to lease the house from the new owner if everything works out. We left the court house a little frazzled but relieved that we have a little extra time to prepare. When we got home we got a call from the realtor to let us know that the investor had actually made an offer on the house and she was headed over later to start the paperwork. We don't know what the offer is yet and we still have a long way to go to get the bank to approve everything along with a ton of details that have to be worked out but it is a start. If all of this had not happened we would have lost the house by the middle of next month, now we have until at least the end of April. So a day that we have been dreading actually had a bit if a silver lining for our family. We will keep our fingers crossed and hope that things start working out for us, sure would be nice...

Hockey tonight… Day 1150 10JAN12

2012-01-11T00:09:00.001-05:00

The boys did their school work this morning and did pretty well getting things done. We spent the rest of the afternoon just doing different things around the house waiting for this evening to arrive since we got tickets to the Bolts game from the Pediatric Cancer Foundation. Renee was working the game so we took her dad along to enjoy the game. We had a great time and enjoyed the game immensely, unfortunately the Bolts lost in a shootout but they played well tonight. After the game was over we got two special treats, first we got to visit the TV control room at the Forum. A former student of mine works there and she gave us a tour of the facility which was pretty neat. Secondly, Coach Raymond left us passes to come down to the bench after the game and he came out and visited with us for a bit. We headed home after that and got the boys into bed so they can get a little sleep before school starts up again in the morning.

Testing day… Day 1149 09JAN12

2012-01-09T23:22:00.002-05:00

Joshua spent the boring and a chunk of the afternoon getting through some required school. He did okay but not as well as we would like to see him do. We are not really sure right now what is causing him to struggle in certain areas, we think it is probably chemo related but will have to wait until he is off chemo to really know for sure. The boys spent the rest of their day with Renee at home since I was off teaching until late. I am sure they had a fun evening and everybody was sound asleep when I got in tonight. Tomorrow brings more of the same as we start working our way towards the end of the week.

Skating with a friend… Day 1148 08JAN12

2012-01-08T22:27:00.000-05:00

Joshua and Trent got up early in time for Trent's mom to pick them up and take them off to church. Renee had to get ready to go work the circus one last day and Jarrod and I spent the morning puttering about in the garage. Joshua and Trent got back right before lunch time and since we had planned to go get some ice time in up at the rink we took Trent with us. The boys all did great out on the ice and we had a fun skate together. Afterwards we headed home and Joshua and Trent got some playtime in until Trent's dad came over to collect him. Those two had a great weekend together and I am glad that Joshua has a good friend to spend time with. After dinner we all collected on the couch and watched a little tele until Renee got home and then she joined us for a bit more. Everybody was pretty tired so no arguments when it was time to head off to bed. Normal school day in the morning, no clinic this week...

Giggle twins reunite… Day 1147 07JAN12

2012-01-07T23:49:00.002-05:00

Joshua got his wish today and Trent came over to spend the afternoon and then sleepover. The two of them had a blast playing all day alternating between inside and outside while Jarrod and I did some stuff out in the garage. Renee was working all day so it was just us boys around the place, but they behaved very well. The bolts played the Habs tight so Jarrod and I watched the game while the giggle twins played on the computer. We lost the game but the boys never lost their smiles.

Once again… Day 1146 06JAN12

2012-01-07T10:01:00.002-05:00

Joshua got up early and got ready for Miss Caroline to arrive since it was time once again for his IVIG transfusion. She got him accessed without a hitch and the countdown to be free of the IV pump started. He got finished early afternoon and did fine although he got pretty tired later in that afternoon. He had enough energy to head over to Trent's to play for a bit before Renee dropped him and Jarrod off at her parents so she could head in to work. I picked the boys up later after I got finished and we headed for home so they could get some sleep. A busy day for all of us.

Back to work… Day 1145 05JAN12

2012-01-05T22:28:00.001-05:00

I had to go back to work starting early this morning so I was gone before the boys woke up. Renee got them going and did school work with Joshua until after lunch time. The boys spent the rest of the day playing and were still going strong when I got home. The circus is in town so Renee will be working the next couple of days. I got a bite of dinner and then we settled in to watch the Lightning take on Ottawa, they lost although they had a ton of shots. The boys trudged off to bed after the game was over and settled in for a good nights rest. Tomorrow will bring more of the same and just a little warmer temps outside.

School and play time… Day 1144 04JAN12

2012-01-04T22:23:00.002-05:00

Joshua again had a busy day of school work and he managed to plow right on through it without any problems. He did an online session with his teacher this morning and then worked with Renee until early afternoon. A little after 2:00 Trent's mom came by and picked up Joshua to go over and hang out at their house for the rest of the afternoon, he was thrilled and had been looking forward to going. Joshua arrived back before dinner and after we ate we all settled in to watch a little tele before bed time came around. It was a productive and fun day for Joshua and I am glad he has good friends to play with.

Winter finally got here :)… Day 1143 03JAN12

2012-01-03T22:39:00.001-05:00

The temperature fell through the floor over night with really strong winds that pushed the cold air in. It finally feels like winter time here in sunny Florida. Joshua got a bunch of school work done today and did really well working through some of his more difficult subjects with Renee. After he got finished we got together and took down all of the Christmas stuff and got it back into the boxes and stored until the next time we need it. Before dinner time I put on my skates and went out to get a little practice in and was soon joined by Joshua and then Jarrod. It was refreshing to be out in the cold air and we had a lot of fun playing together. Our last task before it got dark was to get the plants in and make sure that the turtle was safely cuddled up in his house. Our after dinner time was spent watching the Lightning play up in Toronto, who unfortunately beat them rather soundly. Tomorrow is another day of school as the schedule around here returns to normal until the next round of holidays.

Here is a picture of the countdown creation that Joshua and Jarrod created to track how many days of treatment Joshua as left, nice to see it in double digits :)

First clinic of the new year… Day 1142 02JAN12

2012-01-02T22:59:00.004-05:00

We all got up and had a little breakfast before heading off to the clinic. Once there Joshua got his finger poked and the waiting began for results and a visit with the Doctor. His counts are looking great with his ANC at 1540 and he is cruising right along with no complaints.

We headed out from the hospital to go have a bite of lunch over at my dad's house. He had offered the boys very favorite pizza for a treat and there was no way they were going to turn that down. While we were there Jarrod and Joshua helped him put all of his Christmas stuff back up into the attic and get a few little projects squared away. We had a nice lunch and then headed for home so the boys could get started on school.
The weather is turning off much colder as the day has progressed and it made for a good time to be indoors. We did take a break in the late afternoon to watch the Winter Classic which is always fun and we always like a little hockey.

The evening slipped by and before we knew it the boys were off to bed to get some rest. School begins in earnest tomorrow as they work towards getting this school year completed.

Change is coming… Day 1141 01JAN12

2012-01-01T22:47:00.002-05:00

A new year is upon us and many new challenges await us in 2012. This will be the year that we finally reach the end of the long journey we have been on, the year we lose our home and must find a new place to begin anew, the year we will embrace a new normal and come to terms with what it means, this will be a year of change for all of us.

Beginning yesterday we started counting down the days to Joshua's end of treatment date of 10MAR12, the boys built a LEGO countdown that they change every morning when they get up. It is a daily reminder to all of us that the end of chemo is drawing nearer every day. It still feels to me that it is a long way off, the journey has been hard.

We spent our day playing and working around the house. Joshua had Taylor and Avery over for a good while and they enjoyed hanging out with each other. I worked out in the garage and Jarrod did his own thing mostly. Renee had to go into to work for a bit but was back in the early afternoon. She prepared a great rib roast for dinner and we invited my dad over for a visit and some supper. It was a nice meal and we enjoyed the time together.

The rest of the evening was just us relaxing and spending a little time together. Joshua did get a call from Coach Raymond to wish him a Happy New Year and to say that he would see us all soon. It is lots of fun to watch Joshua talk to him on the phone, he is so cute :)

In the morning we get up and head in to the clinic to get Joshua's counts and see how he is doing after all the holidays, it is also time to fire up school again and get both the boys back to work.

End of 11… Day 1140 31DEC11

2012-01-01T00:11:00.003-05:00

Tonight we bid goodbye and farewell to 2011. As I look back over the events that have transpired in this past year I am grateful. Grateful for no days in-patient, for Joshua continuing to soldier on day in and day out, for all of the wonderful memories from last year we have as a family. The boys both tried to stay up for the ball drop… only Jarrod made it this year :)

A Happy New year to all of you who keep tabs on our brave little warrior. May 2012 bring you all happiness and peace and love.

School then skate… Day 1139 30DEC11

2011-12-30T22:07:00.002-05:00

Joshua got a little extra incentive to get school finished today since I had promised to take him and Jarrod to skate if he got it all done. So right after lunch, since he got it done :), we headed out to get a little ice time in. Joshua skated as a goalie today and got some good tips from a coupe of the goalies we have gotten to know. Jarrod and I had a good skate and then headed for him. As soon as we got our hockey gear stowed Jarrod and I headed over to Renee's dads to help him get the last piece of the boat lift taken down and dragged onto shore. We got it finished although we were pretty beat by the time all was said and done and headed home to get some dinner going, Renee had picked up some pork chops at the market so we tossed them on the grill. We finished our night off relaxing together and watching a little tele.

Joshua + 2… Day 1138 29DEC11

2011-12-29T23:08:00.002-05:00

Joshua did school work during the morning but after lunch Trent and Chas came over for a while to play. The boys played inside and out for the duration of the afternoon and had a really fun time hanging out. Jarrod received the LEGO kit that he had ordered with his Christmas money so he, of course, settled in for the afternoon building. He finished it tonight during the hockey game and really enjoyed the build. We won the game which made a nice ending for our day.

Trade ins… Day 1137 28DEC11

2011-12-28T22:36:00.002-05:00

Joshua and Jarrod got a bunch of their old games together this afternoon and we took them up to Gamestop so they could trade them in and get something new that they have been wanting. The line was rather long but we persevered and made it to the counter so they could do their business. It worked out like they wanted and they left the store with a new game and a burning desire to get back home as quickly as possible. Renee and I had a few other stops on the way but we managed to get them home relatively fast. They spent the late afternoon playing together until it was time for a little dinner. Renee was working this evening so the boys and I curled up and watched a few episodes of Doctor Who before bedtime.

School and a little shopping… Day 1136 27DEC11

2011-12-27T22:35:00.001-05:00

Joshua got back on his school work this morning and managed to get through a book report with out any trouble. He is still trying to get caught up and he is gaining ground. The morning was gloomy and rainy so it was a perfect time to stay inside and get stuff finished. After lunch the boys asked if I could take them up to Walmart so they could look for a few things that they wanted to spend their Christmas money on so we loaded up in the car and headed out. We had fun walking around the store and Joshua found a new Xbox game that he wanted so he pooled his resources and bought it. I managed to sneak a few extra errands into the schedule but the boys didn't mind riding around with me for a bit. We got home a little bit before Renee had to leave for work. After we got some dinner the boys played the new game that Joshua picked up while I did some chores around the house. We settled in at 7:30 to watch the Bolts game and were rewarded with a nice win at home. The weather is turning off cooler for the next coupe of days which will be a nice change and a good incentive to get some work done outside.

The day after the merry… Day 1135 26DEC11

2011-12-26T22:34:00.002-05:00

Taylor and Joshua were up early playing. Jarrod got up with the sun because he had his big LEGO set to build, we only got him one large technic model but the one he wanted was huge and had over 1200 pieces so he wanted to get an early jump on it. He managed to get it done by the middle of the afternoon and was very pleased with how it looked. I will try and get him to take some pictures to share. Taylor stayed until lunch time and then headed home. Joshua had a pre-arranged play date with Carly this afternoon so he headed over to her house after lunch. The rest of us did our own thing around the house until dinner time when Joshua returned. He had great day playing but was rather tired out. We relaxed for the remainder of the evening until it was time to send the boys off to bed, the memory of Christmas still buzzing in their brains :)

Merry Christmas… Day 1134 25DEC11

2011-12-25T20:50:00.002-05:00

The boys did well and at least slept in until sunrise. We all got up, I made a cup of coffee, and then we sat down to watch the boys open presents. As you might suspect there were mostly presents with LEGO on the outside of the box along with a few games and other goodies. Breakfast followed and then the building began in earnest. Both boys got a few things constructed by lunchtime at which point they took a break for a while. My dad headed for home after lunch and we headed over to Renee's parents a little later in the afternoon for a visit and a great meal followed by a few more presents that needed to be unwrapped. It was a nice afternoon and we were pretty tired after we got home. Taylor has joined us for the night so Joshua and him have been running around the house and playing and enjoying each others company.

Tomorrow will be another day filled with the unmistakable sound of LEGO bricks being sorted through as new creations spring to life all over the house. I'm looking forward to it all :)

Christmas Eve… Day 1133 24DEC11

2011-12-24T23:38:00.006-05:00

Well Joshua and Jarrod are thrilled! Christmas Eve has finally arrived and as I thought they started the hourly countdown at breakfast this morning :) It is so much fun to watch them be all excited and anxious.

As a treat Jarrod and I went up to get in some ice time, just the two of us, since Joshua and I went to skate the other day. The rink was pretty empty and we had a really fun skate together. Jarrod is skating really well and he was working on his backwards cross overs today and doing a good job of it.

We headed home afterwards and got there just before my dad showed up to spend the rest of the day and the night with us. Renee prepared a wonderful dinner and set quite a pretty table for us to eat at. After dinner we all headed to the living room to watch a little tele before sending to very reluctant to go to sleep boys off to bed with strict instructions to not get up too early :) Not going to help but we tried…

I am sure that like every Christmas morning in the past a small voice will ask us if we are awake just as the sun is rising somewhere over eastern China ;)

The eve of Christmas Eve… Day 1132 23DEC11

2011-12-23T23:45:00.000-05:00

The boys informed me this morning that this was the eve of Christmas Eve :) They are pretty excited, understandably, about the next two days coming up. Joshua got a little bit of school work done today, he is still trying to get caught up from Thanksgiving break but he is slowly hacking away at the backlog. We spent the day doing stuff around the house and just enjoying the holidays. Renee went out for the evening to meet up with her friend Laura whom she hasn't seen in a while. They had anise time together and she made it back in time to watch the Bolts play out in Denver. Jarod and I were the only ones who stayed up to watch the whole game which is good since they lost in overtime :(

Tomorrow is the eve of Christmas, as the boys pointed out on their way to get ready for bed and I am sure they will start the hourly countdown sometime after breakfast tomorrow.

A little ice time… Day 1131 22DEC11

2011-12-22T22:37:00.002-05:00

Joshua and I headed out after eating a bite of lunch to go to a parent and player skate and shoot up at the rink. We arrived early so we cold get his skates sharpened and make sure we were on the list to go out on the ice. They only allow so many players and we were almost at the top of the list. Joshua also needed a new hockey stick as he has outgrown his older one so we looked around and found a replacement that he liked. He choose to wrap it with red tape to match his socks and jersey. We had a great two hour skate and got a lot of good practice time in. Joshua really liked his new stick and said it help him do better on the ice. We were pretty tuckered out and rather hungry when we got off of the ice so we stopped by the snack bar to get him something to eat before we headed for home. While we were gone Renee and Jarrod ran a few errands and Jarrod went for his follow up visit with his podiatrist. His toe is healing perfectly and the Doctor was pleased with the result, it shouldn't bother him anymore. Skating really drained Joshua's batteries so we took it really easy for the rest of the evening, I am sure that after a good nights rest he will be right as rain in the morning.

Play day… Day 1130 21DEC11

2011-12-22T00:32:00.002-05:00

Wojtek came over to have some fun with Joshua today while Ania and Renee went a great Polish deli over in Clearwater to get some goodies to eat. The boys had a lot of fun playing with LEGO's for a while and then after lunch I drove them up to the park so we could have a bit of outdoor recreation. Renee and Ania were back when we came home and they spent the rest of the afternoon hanging out with us. Like always they came back with lots of yummy stuff for us to munch on. Joshua ran out of gas about mid afternoon as the chemo from Monday caught up with him. He spent the rest of the evening taking it easy and not doing a whole lot. So far he has kept the monster pretty firmly in check which is great. If he is feeling up to it we might go up to the rink and skate tomorrow, I will have to see how he feels in the morning when he gets up.

Quiet day… Day 1129 20DEC11

2011-12-20T23:34:00.002-05:00

All quiet on the home front today, Joshua has been doing extremely well managing the steroids so far. Renee and I spent the better part of the day running around town while the boys hung out with pa and helped him on a few projects. I didn't pick them up until almost dark and both off them had a good day. The weather was pretty nice which made being outside a nice thing. Joshua and I manage to get a little skating in before dinner. After dinner we all relaxed a bit and caught up with each others days. Tomorrow Wojtek is coming over for a play date which should be a lot of fun :)

The week before Christmas… Day 1128 19DEC11

2011-12-19T22:58:00.001-05:00

Twas the week before Christmas and all through the house every one was walking on eggshells and being as quiet as a mouse for fear that the monster would soon be near… Joshua went to clinic this morning to get his counts checked which came back fine, his ANC was 2200 and everything else looked good. He got his port accessed and received his vincristine and then got his pentamadine breathing treatment. He also gets to start his steroids pulse today, he had 12 pills to take this evening.

Their was a little Christmas party at the hospital so Joshua and Renee hung out for a while to enjoy the festivities before heading for home. Jarrod and I meantime had quiet morning together at home and got started on some projects around the house. Renee and Joshua got home just after lunchtime and started in on his school work while Jarrod and I worked out in the garage. Renee had to work for a little while this evening so the boys and I had a little dinner and then relaxed in front of the tele for a bit until she got back home. Tomorrow we have a bunch of running around to do until early afternoon and then we can come home and relax a bit.

Lightning Ice… Day 1127 18DEC11

2011-12-18T23:56:00.001-05:00

What a great smile! He was stoked!

We got to attend the Lighting Employees Christmas party today which was held, of course, at the rink where they skate. Their was food, music, and Santa came to visit but the highlight for us was the chance to spend the afternoon skating on the Bolts home sheet of ice. The boys were besides themselves the second we stepped from the players bench onto the ice. It was a really neat feeling to be seeing the same sights that the Bolts look at when they are playing and definitely something we will not soon forget. Joshua even got a special visit from Coach Raymond who put his skates on and came out on the ice with us. He worked with Joshua on his skating skills for a while and gave Jarrod and I some great tips as well. It was great to get to hang out with Martin for a bit and get a chance to talk a little hockey, he is truly a great guy! We spent three hours out on the ice and when it was time to leave we were the last ones to step off and close the door behind us.

Jarrod at center ice

off he goes...

invisible hockey stick ;)

Renee and her hockey boys

Joshua trying out center ice

taking the blue line...

in the corner...

The Jumbotron

even the old guys got to skate

Jarrod serving a 2 minute minor for excessive speed :)

Lee and the boys

On the ice with Coach Raymond

What a great afternoon!

We headed home and all took it easy for the rest of the day with a nice dinner and then a little tele before sending the boys off to bed. Joshua has clinic in the morning and will be getting accessed to get vincristine again along with starting up another week of steroids to get him ready for Christmas :)

Quantum Leap… Day 1126 17DEC11

2011-12-17T22:30:00.001-05:00

We were invited to a Christmas party today way up in Odessa at a horse ranch run by Quantum Leap Farm, a nonprofit organization founded in 2000, they are a nationally recognized equestrian program serving injured and disabled civilian adults and children, military service members and their families. The facilities were amazing and the weather couldn't have been any more ideal for being outside for the afternoon. We saw lots of our cancer family including a few families we hadn't seen in quite a while. The kids had a fantastic time playing and being around all the animals. Santa showed up in a horse drawn wagon and proceeded to hand out gifts to all of the kids.

Joshua got to ride a horse whose name was Cooper. He really likes being up in the saddle and according to him he is ready to take a much longer ride out in the woods. He looked right at home to us.

One of the more interesting critters walking around was huge turkey named Wishbone. The lady that runs the farm found him injured on the side of the road and nursed him back to health. He was very tolerant of all the kids and let them pet him and take his picture. He even wore his best red Christmas bows for the party.

There were goats, horses, a donkey, and several great dogs as well. The party wrapped up around four and we headed back towards our part of the world. What a wonderful afternoon for all of us!

The boys and I got a little skate in before dark and then settled in to watch the Lighting play the Blue Jackets. We won 3-2 :)

Tomorrow we get to go skate on the Bolts home ice during the Christmas party for Renee and her co-workers, we are all very stoked about the chance to be on their home ice!

Sleepover… Day 1125 16DEC11

2011-12-16T23:38:00.002-05:00

Joshua has been waiting for this evening to arrive for several weeks since he had planned a sleepover with his friend Trent. He actually got a two for one deal since Trent's younger brother Chas was part of the plan as well. Renee says they had a fun filled evening and when I got home they were all in the playroom watching a movie. Jarrod decided to spend the evening quietly playing on the computer :) In the morning we will feed all the boys and then enjoy watching them run around and have fun until their mom comes to collect them :)

Hockey with pa… Day 1124 15DEC11

2011-12-15T22:35:00.001-05:00

Joshua and Jarrod got to go see the Bolts play tonight with pa. Renee was working and so was I but we had gotten tickets earlier in the week so Renee's dad was able to meet the boys and enjoy the game. It was a great game and we won it in OT on a goal from Stamkos, Joshua's favorite player. I am sure Stamkos heard Joshua cheering from the top of the rink :) I cheered from home with Hobie although he sept through the whole game.

Christmas break is fast approaching and the boys and I only have to get done with classes tomorrow before we all get a well deserved hiatus until next year rolls around.

Phonics kind of day… Day 1123 14DEC11

2011-12-14T23:22:00.002-05:00

Joshua spent his school day working on phonics with Renee. He did really well and seemed to stay focused most of the day. Jarrod's toe was bothering him quite a bit last night but was feeling better this morning and continued to improve as the day wore on, he is definitely on the mend. The rest of our day was pretty standard and not a whole lot got done this evening. Every once in a while we all just need to veg out for a bit :) Tomorrow is back to work and school but the boys get to go with pa to the hockey game tomorrow night! I know they will enjoy cheering the Bolts on to victory...

Lots of waiting… Day 1122 13DEC11

2011-12-13T23:20:00.001-05:00

We got an early start today with a good breakfast of pancakes thanks to Renee. As soon as we were done it was time to drive up to north Tampa for a doctors appointment for Renee, the boys and I sat in the waiting room together passing the time. When she was done we all headed back to the house for lunch. Renee and the boys got the outside Christmas lights up before we all set off again. Renee went out to finish up the Christmas shopping and the boys and I did the grocery run and then a trip to the bank on the way to Jarrod's late afternoon appointment with his podiatrist to get his ingrown toenail fixed. Joshua and I sat in the room with Jarrod while he got his toe numbed up and then the nail trimmed back. He did great but I am sure it will start hurting when the anesthesia wears off later on. We stopped off at the library to donate some books on the way back home. When we got there Jarrod propped his foot up and Joshua and I decided to get a quick skate in before the light disappeared. Renee got home from shopping while we were out in the street and we headed in to get some dinner going.

Sure enough Jarrod's toe started throbbing pretty bad as the numbness wore off, he was being a trooper and gritting his teeth a bit when he headed off to bed. I hope that in the morning he feels a lot better, the first 24 hours is the worst the Doctor said.

Tomorrow is a stay at home and get some school work done kind of day for both the boys.

Late start… Day 1121 12DEC11

2011-12-12T23:09:00.001-05:00

Joshua got a rather late start this morning, he had a hard time going to sleep last night because Renee wasn't here so he wound up staying up until she got home which was after midnight. Needless to say he was pretty tired and slept until after 11 this morning. He seemed no worse for wear when he got up and was busy doing his school work soon after breakfast got taken care of. THe rest of the afternoon transpired rather quickly and it wasn't long before the boys were headed over to Renee's parents for a bit until I got off of work and could go pick them up. We watched the tail end of the Lightning game and then the boys headed off to bed.

Tomorrow has us pretty busy and running around quite a bit so I hope that Joshua can get a good nights sleep in.

Skate time… Day 1120 11DEC11

2011-12-11T21:59:00.001-05:00

We all had a rather normal Sunday morning with everyone following their normal routine. We boys decided to go get some ice time this afternoon while Renee was at work. It has been a couple of weeks since we had a chance to hit the ice and we all miss it. We got our gear together, at a quick bite of lunch and then headed for the rink. We all had a good skate and enjoyed our time on the ice, Joshua did really well and his energy held up the entire session. We got cleaned up afterwards and headed for home to rest and get some dinner going. We had a nice quiet evening together hanging out and watching a little tele together before bed time. I always enjoy time with my boys :)

Tomorrow is the start of the last school week before Christmas break! Lots to get done for all of us so we can take a few weeks off.

Coral reefs and stars… Day 1119 10DEC11

2011-12-10T22:32:00.001-05:00

Jarrod and Joshua along with the rest of us slept in this morning. Renee and Joshua didn't make it home last night until 1:30 so they were pretty tuckered out.

The boys had asked if I could take them to MOSI for the afternoon so we ate a quick bite of lunch and headed out. First up was an IMAX film called Coral Reefs that Jarrod has been wanting to see. We walked into the theater and Joshua picked out some seats for us, as we waited for the movie to start a group from the CCC came in and sat down right behind us. Joshua's buddy Trent was there along with the rest of the Lewis clan so Joshua was thrilled. Jarrod's buddy Matt came and sat next to him and we all enjoyed the movie together. We walked around for a few minutes with the CCC group after the movie was over until they had to leave to go home.

Jarrod's other request for the day was to go see the planetarium show so we headed across the street to the other wing of the museum to wait for the show to begin. The boys had fun playing with all the exhibits until it was time to go in and sit down in the dark for a while. Neither of the boys had ever been in a planetarium before and Jarrod relay enjoyed the show. Joshua got a little motion sick as the stars were moving about so he was less enthusiastic about the whole thing. We headed out of the museum afterwards to begin our journey back home but decided as we walked out to the car to take walk through the nature trails behind the museum. We had a nice walk and got a chance to get some fresh air and a bit of exercise.

We made it home in time to get a little skating in before it got dark. As we were eating dinner pa called to tell us that the annual lighted boat parade was going to start in about 30 minute so we finished up our meal and jumped in the car. We arrived just in time to see the procession of boats parade past grandma and pa's dock. The boats were all lit up and it was quite the spectacle. We said our goodbyes after it was over and headed home to watch the Bolts play a little hockey to wrap up our day. Quite a lot of fun for one Saturday :)

Mickey's house… Day 1118 09DEC11

2011-12-09T23:38:00.001-05:00

Joshua and Renee got to go visit Mickey's house this afternoon! The Children's Cancer Center along with Kill Mode Training Company, Vykin Corp. and Celestar sponsored the Hope & Shine Dream Event to take 15 cancer kids and a parent to see the night festivities at the Magic Kingdom. Renee and Joshua were joined by lots of our cancer friends including Ania and Wojtek. Wojtek has never seen the Magic Kingdom so it was an extra special treat for him. Renee tells me that they had a wonderful time and got to ride Space Mountain, Racecars, It's a Small world, and Pirates of the Caribbean… All the classics :) They had a nice dinner and were really living it up. It was a great opportunity for the kids and I know they all had a magical evening.

Jarod spent the afternoon and evening helping pa out with a bunch of stuff and said he had a great day. I picked him and Missy up on my way home and got them both safely tucked into bed.

Thanks to the Lightning… Day 1117 08DEC11

2011-12-08T22:33:00.001-05:00

Joshua had a little bit of a cough this morning so Renee gave him some meds and it pretty much went away which is good. We don't want him sick this time of year. Both the boys did really well in school today and got quite a bit accomplished.

After lunch Renee and the boys headed in to the Children's Cancer Center to film a short segment that will be part of a video thank you to the Lightning Foundation and the Lightning Players for all that they do for our cancer kids. They are a great organization and we are lucky as a community to have their support.

On the way home from the CCC the kids and Renee stopped at my dads to pick up Missy who will be staying with us for a week while my dad travels up north for a visit with my sister. Both of the boys are excited about her staying with us and I am sure she will be spoiled even better than she currently is :)

I made it home in time to get some dinner and sit down to watch the hockey game. We found out that one of the Bolts players, Martin St. Louis, was pretty severely injured during morning practice by a puck that hit him in his left eye. Our thoughts go out to him and his family and we hope for his quick recovery and return to the ice. The Bolts managed to rally together and win against the Rangers in a shootout, we really enjoyed the game.

Tomorrow is a busy day for all of us and a special trip is in store for Renee and Joshua, more details to come :)

Cold snap… Day 1116 07DEC11

2011-12-07T21:50:00.001-05:00

The day started of pretty normal with the boys getting started on school and me heading in to work for a bit. I got home in the early afternoon just as it was beginning to rain and things fell off from there. We have now got winds gusting around outside with rain and it is much colder than it was earlier today. All of us are still a little tired from all the stuff we did yesterday so this evening was pretty relaxed with a little Doctor Who on the tele and not much else. Tomorrow should dawn colder still and it may finally feel like we are getting close to Christmas :) In the meantime we will stay warm and toasty inside and rest while we have the chance.

Pretty busy day… Day 1115 06DEC11

2011-12-06T22:57:00.001-05:00

Our day started with a trip to the clinic to get Joshua's lab done. His counts came back really good with his ANC at 3450 and everything else in the black.

As soon as we got done with the doctor we headed for home to change and run off to help Renee's dad get his boat out of the water and lifted onto the new trailer he got for it. Joshua helmed the boat for the trip from the dock to the yard where we pulled the boat. We got it finished but it was a long hot and physically exhausting afternoon.

We came home got showered and changed and then jumped back in the car to head into Tampa for the St. Josephs Clinic Christmas party. The boy's have been looking forward to this one and we all had a nice evening visiting with friends and enjoying the food and music.

After the party broke up we headed over to my Dad's house for a quick visit and so the boys could get his Christmas decorations out of the attic. That taken care of we headed for home so we could all fall into a deep sleep as so as our heads touched the pillows.

Whew… I got tired all over again just recounting all of that :)

IVIG for December… Day 1114 05DEC11

2011-12-05T23:06:00.001-05:00

Joshua got up early to get ready for Caroline. She got here and got him started like always without a fuss or any problems. She really is a wonderful nurse and we are lucky that we can continue to get her for all of his transfusions. The day passed slowly with Joshua mostly resting on the couch while hooked up to the pump. I left for work before he got finished but Renee said he did fine and had no ill effects. The boys headed over to stay with Renee's parents until I got off of work and could pick them up. They were watching the Bolts game when I called and had a fun evening hanging out with grandma and pa. It was straight home and off to bed since we have a busy day tomorrow and have to get up early and head off for clinic to get Joshua's counts checked.

I received a few pictures from Lisa of Jarrod getting his award from the Mayor of Tampa so I thought I would share :)

Christmas tree… Day 1113 04DEC11

2011-12-04T22:41:00.001-05:00

Joshua was feeling much better this morning with no ill effects from yesterday thank goodness. After lunch the boys and Renee decided it was time to clean the house up, re-arrange the furniture and get Christmas down from the attic. So we did. As soon as all the boxes were down and assembled the boys got to work on getting the tree up. They split the lights between Jarrod doing the upper branches and Joshua doing the lower ones. Next it was up to the boys to get the decorations out and hung on the tree. They did a fantastic job and worked well together to get the job finished. Now we have a pretty Christmas tree in the living room to enjoy for the rest of the month. Hard to believe that Christmas is once again right around the corner, this past year seems to have evaporated right under my nose.

In the morning Caroline will be here early to give Joshua his monthly IVIG transfusion, what a way to start a week...

Wojtek's Birthday… Day 1112 03DEC11

2011-12-03T22:05:00.001-05:00

Today was Wojtek's Birthday so right before lunch we loaded up and headed over to his house for a party. Ania prepared a bunch of yummy polish food and we spent the afternoon eating, playing games and generally having a great time. Renee had to leave around 3:30 to go to work but the boys and I stayed until dark. It was a wonderful day with our good friends!

On the way home Joshua started to get sick to his stomach and ended up falling asleep in the car about half way home. We got him in from the car and he still wasn't feeling well. Not long after that his stomach decided it no longer wanted to hold its contents anymore, I got him cleaned up and he curled up on the couch and promptly fell back to sleep. He stayed that way through the entire hockey game and didn't wake up until I moved him to his bed. He felt much better and was hungry when he woke up so we hopped into the kitchen and got his some food to help fill him back up. I really think that he played too hard, ate too little, and didn't get enough water throughout the afternoon. Nonetheless we will keep an eye on him throughout the night just to make sure.

Pretty normal for 1111… Day 1111 02DEC11

2011-12-03T00:16:00.001-05:00

Well it works out that today is day 1111 and since there are no Mayan legends associated with Joshua's diagnosis date the day passed without incident. The boys spent the morning engrossed in school work, Joshua got 11 lessons done before I left for work! Jarrod was rocking along as well.

Later in the afternoon both boys headed over to Renee's parents to hang out for the evening as we were both working. They were going to spend the night but Renee got out earlier than she had anticipated and swung by to pick up the boys on her way home. I had to work extra late so by the time I dragged in the house was dark and quiet.

We have a full weekend ahead of us with a birthday party for Wojtek tomorrow and a Christmas gathering with Yan and his family on Sunday. Should be fun and I am sure the weekend will whiz by before we know it.

Christmas gathering… Day 1110 01DEC11

2011-12-01T22:50:00.001-05:00

We all got up early to start our day, I had to head off for a morning class and Jarrod had a doctors appointment. The rest of the day flew by until it was evening time and we all met up at the Children's Cancer Center for our annual Christmas gathering. There were a lot of people in attendance and we got to spend a great evening with a bunch of our friends talking, eating, and watching the kids have a great time running around and playing. We got home after ten and shuffled the boys off to bed for a night of rest. It was a great way to start off our Christmas celebrating :)

Jamie and Allie head home… Day 1109 30NOV11

2011-11-30T22:46:00.001-05:00

We all got up early to say goodbye to Jamie and Allie before they took off for home. It has been an absolute joy to have them around these past days and we will dearly miss their company. Allie is growing up so fast and is a wonderful child, so full of life and curiosity. We will all miss them until the next time they get a chance to come down to visit.

After they got under way Renee had to leave for work and it was time for me to get working with Joshua in school. He did really well and we got five lessons done in geography and science. We even got to do some cool experiments to test out what he is learning. We got finished just in time to get some lunch and then got to spend the rest of the afternoon relaxing and doing stuff around the house. Renee was home for the afternoon before she had to head out again. The boys and I made a quick trip to the market and then came home to get some dinner prepared. The hockey game started at 7:30 and we settled in to see if we could beat the Redwings on the road. Alas the boys were unable to pull off a win but put in a good effort. After the game it was time for everyone to get ready for bed and get some sleep, we have an even earlier morning schedule for tomorrow.

I got a text from Jamie around 4:30 letting me know that they made it home safe and sound :)

Lunch with the Mayor… Day 1108 29NOV11

2011-11-29T23:07:00.001-05:00

I got up with the boys and after a bite of breakfast Joshua and I got started on his school work while Jarrod worked by himself.

It wasn't long before we had to get ready to go meet Renee and head off to Jarrod's special lunch with the Mayor of Tampa Bob Buckhorn. Jarod submitted some artwork to be considered for a Christmas card that the CCC will sell this season and his art was one of the final selections. To celebrate they held a luncheon and the Mayor presented each winner with an award which included a copy of the cards that have been printed and will be for sale in Publix's all over the area very soon. The card turned out very nice and includes Jarrod's picture on the back along with a short bio he wrote. Needless to say we are all very proud of Jarrod and really enjoyed going to the luncheon with him. I will have a picture of the event as soon as the photographer from the CCC emails it to me and I will post it when it comes in.

We headed home afterwards to get some stuff done around the house and rest a bit. The weather has been getting steadily cooler and when we went out to skate right before dinner it was marvelous outside :)

Allie and Jamie are leaving for home in the morning :( so we had a final movie night, complete with popcorn, with all of the kids. We watched Cars 2 which was really good and quite funny in places. Afterwards it was straight to bed for all the younger folks.

Rain and cooler… Day 1107 28NOV11

2011-11-28T23:29:00.001-05:00

We awoke to gray skies and by mid-morning it was rising and the temperature was coming down. Perfect weather to stay indoors and get some school work going. Wish the boys thought like that ;) Time for the guys to dust off their school stuff and get back in the fast lane of learning. Joshua was doing well when I left for work and did fine according to Renee. It is always hard to come off of a school break and get motivated.

The rest of the day was stock normal for the boys and they were curled up watching the tele when I got back late this evening. In the morning we have school to get done while Renee is at an appointment and then we are off to a special lunch for Jarrod. Should be fun!

Tired but still going… Day 1106 27NOV11

2011-11-27T22:38:00.001-05:00

Joshua woke up today on the tired side with his back giving him some trouble. It has been 6 days since his LP so this is unfortunately pretty routine for him. He spent the morning on the heating pad resting and taking it easy. At lunchtime Jarrod and I were getting ready to head up for the open skate and Joshua decided he felt up to going along so we all loaded up and left for the rink. He did okay on the ice, he took frequent breaks on the bench and skated for almost half the session before he decided he needed to call it a day. He is very good at deciding when his body says it is time to quit doing something. So he headed of the ice and got out of his gear. When Jarrod and I got off the ice a little while later Joshua was over on the north rink talking to the Jr. Bulls team that he is friends with. All of the guys on the team remember Joshua and were excited to see him and talk a little hockey. He made sure to tell them he is using the gear they donated and how much he loves ice skating. We headed home a little while later and took it easy for the rest of the day.

Tomorrow we all get to kick it back into gear with work and school but before you know it Christmas break will be here and we can go back to playing :)

Less busy… Day 1105 26NOV11

2011-11-26T22:13:00.001-05:00

Today was much less busy than the preceding few days we have had. We all spent most of the day just doing our own things around the house and resting a bit. Joshua and I did get out and skate for a bit to get some exercise before dinner which was nice. The weather today has been on the mild side which made it rather conducive to siting outside and relaxing a bit.

Renee had to work tonight so I whipped up some dinner for the kids before we settled in to watch the hockey game. They won rather decisively which made for a fun game to watch and was way better than the game we attended on Tuesday :) Tomorrow we are going to take another stab at going to visit the manatees, looks like the weather will co-operate this time around.

Visit from old friends… Day 1104 25NOV11

2011-11-26T00:14:00.001-05:00

The "everybody smile" picture :)

Our morning started off like most others with breakfast and for me the all important cup of coffee :) Not long after we got a visit from some old friends, the Proctors, who were in town for the holidays. We haven't seen them for quite a while and it was wonderful to see how much the kids have grown up. Larry, Robert, and Emily are all so much bigger than the last time they were here. Larry and Joshua have known each other there whole lives and each time they get together it is like no time has passed since they last played together. Joshua did great even though he is full of steroids right now and the boys all played for quite a while. Us grownups congregated outside on the deck thanks to the nice weather and got a nice visit in. It was a fun time for all of us and we enjoyed the time we had with them.

Jamie got a chance to go out tonight with some of her girlfriends while Renee baby sat. Allie was great from what I heard and went right off to sleep without too much of a fuss. I was lucky enough, thanks to my good friend Stephanie, to get to go see a great show with her and my other friend Chris along with his two boys. We had a nice dinner before hand and really enjoyed the music. To top it all off the Bolts won in OT against the Panthers and Joshua's favorite Steven Stamkos got the winning goal :)

How they really wanted to look ;)

Thanksgiving 2011… Day 1103 24NOV11

2011-11-24T22:29:00.001-05:00

Our morning and afternoon was a mix of a little house cleaning along with a dollop of skating and a little smidgen of rest to get ready for our evening feasting. Jamie and Allie left right after breakfast to go and spend some time with her family.

We all met up at Renee's parents at 4 to begin our Thanksgiving gathering. In attendance we had grandma and pa, my dad with Missy, Scott and Alecia with Taylor and Avery, and our clan. The table was beautiful and the food was bountiful! We had a marvelous feast followed by some rest family time. I can only speak for myself but I assure you if I had taken another bite I would have surely exploded :) The kids had a great time playing and Allie got to spend some quality time with her great grandparents.

We have much to be thankful for in our world, most importantly our not so little warrior is still winning his fight! We are thankful for every day since our new life began 1103 days ago way back in 2008. Before then it was all to easy to lose sight of the most important things in life. As we move toward the end of another year we will all continue to be thankful each and every day.

I hope that everyones Thanksgiving was full of family love and good food.

Tonight we rest with full tummies, tomorrow we start exercising it off :)

Playtime with cousins… Day 1102 23NOV11

2011-11-23T22:25:00.001-05:00

We had a full house today! Taylor and Avery came over with Alecia to visit and let the kids have a play day . They all had a fun time even though our plans to go visit the manatees got canceled because of rain. We will try and go visit them some time later in the week. Late in the afternoon they headed for home, Renee headed in to work for a while and Allie and Jamie took off to go visit her sisters leaving us boys here at home. So we got our skates on and went out to play a little hockey of course :) Jamie got back in time to have dinner with us, after we got everything cleaned up it was time to watch a few episodes of Doctor Who. I think we have Jamie hooked already :)

Renee made it home in time to put the boys to bed and that wrapped up our day. Tomorrow we will get to gather with family and have a Thanksgiving feast. Yummy...

Leafs blow us away… Day 1101 22NOV11

2011-11-23T00:14:00.001-05:00

We had a fun day at home with Jamie and Allie playing and just doing normal stuff around the house. We got an email from Coach Raymond after lunch asking if we would like tickets for tonight's hockey game, of course we said yes! After getting dinner out of the way we jumped in the car and headed up to the rink to watch the game. It was Allie's first hockey game and it had been a long time since Jamie had been as well. The seats were great! The game not so much :( The Maple Leafs beat us rather badly and Joshua was rather upset afterwards. We are sure that the steroids had a large part of his being so emotional. We waited around after the game hoping to have a chance to visit with Coach Raymond but he was unable to slip away this time, I imagine after a 7-1 loss the coaches were rather busy… It was still a great experience and we enjoyed the evening. Allie really enjoyed the game and was amazingly well behaved the whole time, she is such a wonderful little princess :) We were all tired by the time we dragged ourselves home and I am confident that there will be no early risers around here tomorrow.

Another trip… Day 1100 21NOV11

2011-11-21T23:45:00.001-05:00

Joshua took another trip to the land of lost dreams today while the doctor injected chemo into his spinal fluid. We have watched him be put to sleep more times than I care to dwell upon and it never gets any easier.

He did fine and was awake and ready for pizza by early afternoon. My dad was only to happy to oblige and Renee along with all the kids spent the afternoon at his house having a nice visit. I was able to sneak away from school for a bit and have a bite and enjoy everyones company before they headed for home and I headed back to teach my night class.

Joshua did okay for the rest of the evening and was fast asleep on my side of the bed when I arrived home. We got to start another round of steroids today as well and since Joshua's weight has increased so has his dosage. None of us are sure what the extra steroids will do but all of us have our fingers crossed that the monster will stay caged up for the week.

Ice time again… Day 1099 20NOV11

2011-11-20T22:18:00.001-05:00

We got up and had a good breakfast before heading out to the skate and shoot up at the rink. We arrived and got our gear on and headed out on the ice, while we were getting ready Jamie and Renee arrived with Allie to watch us skate for a bit. Jamie and Allie have never seen us play hockey before. We had a great skate and were totally exhausted by the time we got done. We got out of our gear and headed home to get some lunch and lay about for a bit.

Matter of fact I don't think we accomplished much of anything after we got home which was fine with everybody. Rene whipped up a nice dinner and then we all snuggled up on the couch to watch a little tele before bed time.

We continue to enjoy having Allie and Jamie here, they add a wonderful warmth to our family.

In the morning Joshua has to get up early and head to the clinic and then the day hospital, it is time for another LP and IT methotrexate. We will also get to enjoy a week of steroids during Thanksgiving :(

After this time he is only scheduled for one more LP, YEAH! The end isn't in sight yet but it feels like it is lurking just over the horizon, just out of reach…

Saturday playtime… Day 1098 19NOV11

2011-11-19T22:46:00.001-05:00

Allie wanted pancakes for breakfast so Renee got the griddle out and made them for everybody. Allie already feeds herself with a fork and does quite well, amazing how much she has grown up in such a short time. We spent the rest of the morning and early afternoon relaxing around the house and playing. My dad popped in with Missy to spend some time with Allie and Jamie. He stayed on after Renee had gone off to work and Jamie and Allie left to go visit her parents. We headed out to skate for a bit as he was leaving for home and then came in at sunset to get some dinner sorted out. The hockey game came on at 7 and we all settled in to watch the Bolts play the Devils. It was a good game to watch but our boys lost in the end. Jamie and Allie came back in during the third period and got to watch the tail end of the game. Afterwards we got all the kids ready for bed and gathered in Joshua's bed to read a bedtime story for Allie. Lights out followed and the house became quiet for the night. Tomorrow we are going to get some ice time in and the girls are going to come up and watch us skate, should be fun :)

Jamie and Allie are here!… Day 1097 18NOV11

2011-11-18T23:14:00.001-05:00

Joshua and Jarrod worked hard this morning to get their school work caught up so they can have next week off for Thanksgiving break. They managed to get it done and then began the wait for Jamie and Miss Allie to arrive from Georgia. They made it right after dinner time and met the boys over at Renee's parent's house. After dinner and a visit Jamie brought the boys home to wait for Renee and I to get home. I made it home in time to spend a little time with Allie and Jamie before it was off to bed for all the kids. Allie has grown quite a bit since we last saw her and is quite the talker now. If anything she has gotten even cuter than before :)

I got to read her a bedtime story and then she tucked in for the night. It is nice to have Jamie and Allie staying with us and we are all looking forward to the rest of their visit.

Going to see the Penguins… Day 1096 17NOV11

2011-11-17T22:26:00.001-05:00

Joshua and Jarrod had there normal morning at school and got finished after lunchtime. They relaxed for a bit since tonight they were going to see the Penguins play the Bolts with grandma and pa. We got 4 tickets from the Pediatric Cancer Foundation and Renee's parents were able to take the boys to the game. Renee and I were both working so it was great for the boys to get to go without us. I watched the game when I got home and it was an exciting win for the Bolts. I know the boys had a good time and enjoyed watching the game.

They might be a little slow getting started in the morning but it will have been worth it :)

School one on one… Day 1095 16NOV11

2011-11-16T22:17:00.001-05:00

Joshua got Renee all to himself for school today since Jarrod and I left early to help Renee's dad out with getting a trailer for the boat. We didn't make it back home until mid-afternoon so Joshua was long since finished with all of his school work. He and Renee started getting the boys old bedroom straightened up for our guests who are due to arrive Friday evening. Jamie and Allie are coming down for a week or so and will be staying with us for part of that time. We are excited that they are coming to visit and Jarrod baked oatmeal scotchies to have on hand for when they get here. Nice to have the house filled with the smell of fresh baked cookies :) Joshua and I got a skate in after dinner and then as the sun set we all settled in for dinner and the rest of the evening.

School and a photo shoot… Day 1094 15NOV11

2011-11-15T22:04:00.001-05:00

Joshua and I got to do school together this morning since Renee was working with Jarrod. Joshua did really well and we managed to get 5 lessons finished by lunch time.

We all took a lunch break and then got ready to head into Tampa so Joshua could take part in a photo shoot with the Children's Cancer Center. He was chosen to be in a calendar that they are creating to raise funds for the CCC. Each child was asked what they want to be when they get done with cancer and grow up so naturally Joshua said he wanted to be a hockey player. We took all of his gear and he got suited up including his ice skates to have his pictures taken. I think they will turn out pretty neat, we will just have to wait and see.

After we got finished we stopped by my dad's house since we were close by for a little while. He and Missy are doing great and we had a nice time visiting with them. We headed out to get back before the traffic got bad and had an uneventful ride home. The rest of the evening was stock normal with dinner and a little tele before sending the boys off to bed.

The day after… Day 1093 14NOV11

2011-11-14T23:25:00.001-05:00

The day after camp is always a hard one. Everybody has to adjust themselves back to the normal day in and day out schedule that we have all the time. This morning we got the boys back on school work and I got ready to go back to work and start a new semester. Joshua was a little slow getting started but managed to get up to speed after a bit of cajoling.

Today marked 3 years since we got diagnosed and the painful memories are just below the surface for all of us. It doesn't take much more than a passing thought to bring them welling up to the surface. Joshua got a bit upset last night as we remembered our fateful trip in to meet Dr. Wynn for the first time and discover that our world would never be the same ever again. Even after 1093 days the memory is a fresh as if it happened yesterday, I imagine it always will be that way. Certain moments in time just stick with you...

Joshua was doing much better today and this morning told me that he only had 141 more days to go until he would be done with chemo forever. He always manages to find a glimmer of brightness in every dark cloud :) His faith in the future is inspiring and is one of the things that keeps us putting one foot in front of the other.

Camp Day 3 and coming home… Day 1092 13NOV11

2011-11-13T19:20:00.001-05:00

We finished up a wonderful weekend at camp this morning and headed for home around 1:00. The weekend was marvelous and the boys, as well as us old folks, had a great time playing, laughing, and meeting with new friends and old ones. We stayed in the exact same cabin we were in last year which was pretty neat. They were a lot of leukemia kids at camp this time and they were all right around Joshua's age which gave him lots of people to hang out with. Once again we got a fantastic family pal named Elena and she did a great job of keeping up with the boys all over the camp. It is always with a touch of regret that we leave Boggy Creek and head home because for the weekend all of our cares and worries disappear and are replaced with great memories of times spent with people just likes us watching all of our kids just be normal for the whole weekend. We made it home a little before dinner time and all got our stuff unpriced and put away before relaxing for the rest of the evening.

Tomorrow we get back to a normal week of school and work. Wish we were still at camp :)

Camp Day 2… Day 1091 12NOV11

2011-11-13T19:10:00.001-05:00

We had a wonderful day at Boggy Creek doing all kinds of fun stuff. Going home tomorrow :(

Boggy Creek! Day 1090 11NOV11

2011-11-11T22:23:00.001-05:00

This afternoon couldn't get here fast enough for the boys. We left at 4:00 for Camp Boggy Creek and got there just after dark. We are staying in the same cabin we were in the last time we came. The evening was filled with fun as I am sure the rest of the weekend will be. I am posting from my phone so I will be brief and promise lots of details when we get back :)

Cancer Center Thanksgiving… Day 1089 10NOV11

2011-11-10T22:49:00.001-05:00

Joshua spent his morning doing school work along with Jarrod. After lunch Jarrod and I headed off to help Renee's dad with dissembling the boat lift while Renee and Joshua ran some errands and went to the library to pick up some books for him to read. Jarrod and I made it home in tome to get cleaned up and head off to the Children's Cancer Center for family night and an early Thanksgiving dinner. The food was pretty yummy and we had a nice visit with our extended family. Several of them will be at Boggy Creek with us which is awesome. We made it home rather late and the boys headed off to get some sleep. Tomorrow we get ready to leave for camp! We are all looking forward to the trip and a chance to get away for a few days, we all need a little break.

Missy came to visit… Day 1088 09NOV11

2011-11-09T22:46:00.002-05:00

The boys spent the morning like most other engaged in their school work. They got finished early afternoon and settled in to play a little xbox. A bit later my dad arrived with Missy for a visit. They have become quite good buddies and are really enjoying each others company. We had a nice visit relaxing out on the deck and talking. Joshua wanted to skate and show gramps some of his moves so we moved out into the front and skated for a bit until it was dinner time. My dad headed for home and we tucked in for dinner. The Bolts had a late start game tonight against the Flyers so we had a chance to get the kitchen straightened away before the game came on. They wound up with a nice win in OT and we were all smiles as the boys headed off for bed. They are counting down to our departure for Boggy Creek and Joshua made sure to let me know that we needed to start packing tomorrow :)

Rested up… Day 1087 08NOV11

2011-11-08T22:35:00.002-05:00

Joshua crashed on the couch last night just after the sun went down, he really wore himself out skating. He slept straight on through until 7 this morning, almost twelve solid hours of sleep. He was very rested today and had his usually bounce in his step. Sometimes he just needs to recharge his batteries a bit :)

The rest of his day was pretty standard with the first half filled with school and the latter half full of LEGO's and skating with dad. The two of us ran up to the meat market as well to get some protein in for the coming week. Joshua makes a great shopping companion and the ladies at the meat market love to see him come in.

After dinner we boys watched a little tele and talked about our upcoming trip to Boggy Creek. The boys are getting more excited by the day and the weather looks like it will be wonderful this weekend.

Skate and Shoot… Day 1086 07NOV11

2011-11-07T18:52:00.003-05:00

Joshua has been waiting for today to come around for over a week. This afternoon there was a skate and shoot up at the rink where we could get geared up and be on the ice with sticks and pucks. He has been beside himself waiting to get in front of the goal and have people take shots at him for the first time.

First things first though. We had to go to clinic this morning to get a finger poke and see how his counts were sitting. The results were good with his ANC over 2100, a little high but he is still on 50% chemo dosing because of the slide he had a few weeks back. They will start ramping his chemo back up after next week. With clinic out of the way we headed for home to get some lunch and wait unit time to head for the rink.

Joshua was like a caged cat the last hour, pacing around the house and checking the clock every few minutes :) Finally it was time to leave so we jumped in the car and headed out.

We got in over 2 hours of practice on the ice with only about 15 people. Joshua got peppered by pucks the whole time he was in front of the net. Jarrod and I got a bunch of practice in and accounted for a bunch of the shots bouncing off of Joshua.

How did he like it?

He walked back into the locker room, took off his helmet, broke into a huge grin and said only one word… "EPIC!"

I am pretty sure that means he had a great time. We got out of our gear and wandered out to the car, all of us thoroughly beat. I have no doubt we will all sleep well tonight.

We also found out today that we will get to go to Boggy Creek this weekend for camp! We have been on the waiting list for several months and now we are going back. We are all excited and really looking forward to being at camp again.