Wednesday, December 30, 2009

Sticks hurt... Day 413 30DEC09

Joshua began is day with a round of school work with me while Renee was out doing some stuff with her dad. He did really well and I enjoyed having him read to me this morning. His reading is getting better all the time which is a great thing.

After lunch he left to go on a bike ride up to the park with Jarrod and D.J. . Not long after they left I got a call from Jarrod, Joshua had fallen off his bike and landed on a stick and he wanted us to come up to the park. So Renee and I rushed out the door and drove up to the park to assess the damage and begin triage. He has a pretty nasty scrape on his back and his right arm got a little scraped up as well. Jarrod took great care of him until we got there and never left his side. He is such an awesome big brother.

So we bundled Joshua into the car and trundled on home. After a shower, lots of TLC from both of us, and a little first aid Joshua was feeling better. His back is going to be sore tomorrow for sure but it was a minor abrasion. Thank goodness his platelets are way up or it could have been rather messy. Just a normal kid riding his bike kind of accident, we just respond with every thing short of a medivac helo:)

Tuesday, December 29, 2009

Slumber not... Day 412 29DEC09

Joshua started off today with more school work as he claws his way towards being caught up. Lately he has been much more interested in Indiana Jones Lego on the Xbox than anything else. He is still making progress though and I am sure he will get finished up and back on schedule.

Joshua was re-tested on Monday to see if he still needs the IVIG treatments every month. We got the results to day and he will need to continue the IVIG doses for at least another couple of months. His levels have improved but they still need to climb quite a bit higher before they discontinue the treatments so we have that to look forward to for a little while longer. The worst part is the amount of time it takes to get the infusion done, it pretty much chews up an entire day, plus the potential of really bad side effects from the meds. Not many silver linings in our world.

This evening we headed over to Jim and Sally's for an evening of food and fun. Taylor and Avery were there and they had a big slumber party planned with all of the kids. Unfortunately Joshua was not having his best night and he decided that he wanted to come home rather than stay the night. It was a classic combo of chemo and being overly tired, a rather volatile cocktail. So we came home and got him ready for bed. Hopefully things will seem a little brighter to him in the morning.

Monday, December 28, 2009

Winter Wonderland... Day 411 28DEC09

Joshua had clinic this morning to check his counts which came back really good. His ANC was 3410 thanks to last weeks prednisone dosing, the only really good part about steroids. The rest of this numbers were in the green as well. That means, we hope, smooth sailing until next year.

He came home and spent some time getting caught up on school work. He fell behind a little in December due to being in the hospital , etc... Not a big deal, I am confident he will be back on track before the week is out.

This evening we got a chance to go see the Wild Wonderland at Lowry Park Zoo thanks to tickets that were donated by Cox Radio. It was a lot of fun and we had a really great time. There were real reindeer and penguins to see as well as stingrays to pet. Several of the rides were running and the boys went on them over and over. The rides included a roller coaster that we practically had to drag them away from. It was a wonderful cold night which made the hot chocolate taste even better and walking around was refreshing and brisk. We all got bundled up and stayed for three hours. There were lights everywhere and it was like walking through a wild winter wonderland. Now I know how they got the title...

We finished the evening by getting home in time to watch the last part of the Lightning game which they won handsomely. Joshua was thrilled, he was pretty worried because he had not worn his shirt today. But despite this they won anyway:)

Sunday, December 27, 2009

Brothers... Day 410 27DEC09

After all is said and done Joshua and Jarrod love each other. Sure they squabble and bicker over toys/food/candy/window seats/friends/pecking order/chain of command/the last pack of Kool-Aid/etc... But there are plenty of moments where Renee and I smile and watch fondly as they help each other or do something together.

Today was another non-eventful day just the way we like it. Renee and Jarrod went to church this morning, Joshua played with Taylor and Avery, and I puttered about the house. For our afternoon entertainment we hosted 3 more kids besides our own for a grand total of 5. They were great and everybody played nice and had fun. Jarrod's friend D.J. stayed for sushi Sunday before he went home. It is great that Jarrod now has someone to hang out with in our neighborhood.

Tomorrow is back to the clinic for counts and then back home for school work. We are expecting Joshua's numbers to have stayed in the green as we slide into next year. It would make for a smooth transition into 2010.

Saturday, December 26, 2009

Playtime and hockey... Day 409 26DEC09

After the massive energy expenditure of yesterday we throttled way back for today. The kids played outside for a good bit and enjoyed the warm spell we had going. Jarrod got a long bike ride in with D.J. from across the way. They really seem to have hit it off and spent most of the day together. Joshua had a few post steroid meltdowns but all in all he was fine today. He seems to be prone to depression fits by the end of a steroids week and little things can throw him into a tailspin. Renee and I spent the day watching for impending issues between siblings and practicing our Wii putt putt skills.

Tonight Joshua went to spend the night with Taylor and Avery over at Renee's parents while we went to the hockey game. Jarrod invited D.J. to go and it was his first hockey experience. They both had a great time and to make the evening even better the Lightning managed to pull off a big win over Atlanta. I am pretty sure that their voices will be hoarse tomorrow :)

Friday, December 25, 2009

Christmas 2009... Day 408 25DEC09

Today was the big day! The boys made it to 7:00 a.m. before they bounded into our room and shouted out "Merry Christmas!" You could have powered a medium sized town with the energy they were beaming out. SO we got out of bed, made some coffee (for Dad's health) and set them to opening presents. Our tree was pretty well under penned with presents this year and that would not have been the case without the caring and generosity of a lot of people some of whom we may never meet. Our heartfelt thanks and wishes for a Merry Christmas to all the special people who cared enough to help our children have a wonderful day.

Joshua finally let the reins out a little on the monster inside this morning, a combination of excess energy and lack of sleep. Nothing that required triage but a few close calls. Jamie, Christian, and Allie arived right after lunch to spend some time with us. This is our granddaughters first Christmas and she was having a fine time getting spoiled by everybody.

We headed over to Renee's parents for dinner and more family time. The meal was wonderful and I am sure that I am up at least 5 pounds in the last two days. The house was full of kids and the noise and excitement was wonderful. It was great to be at home for Christmas this year and to be able to spend it with all of our loved ones. Big change from last Christmas :)

Want to know how great that is? Just ask Allie.

Thursday, December 24, 2009

Twas the night before Christmas... Day 407 24DEC09

It is the night before Christmas and finally all is quiet through the house only Renee and myself are stirring. The boys are safely bundled in their beds hopefully until after 5:00 a.m. The stockings are hung with care, there are presents under the tree. Christmas is upon us at last.

We spent the afternoon over at my parents house celebrating Christmas Eve. We had a wonderful dinner and spent some time with them as well as Christian, Jamie, and Allie. It is Allie's first Christmas eve and we welcome her to our family traditions.

Joshua has been doing okay today, he has been a little tired but has managed to keep the steroid monster at bay all week so far. We are very proud of him for exercising such control. He was pretty wiped out by the time we got back home tonight and went to bed right after he put cookies out for Santa and we read the Night Before Christmas from the book I got over 40 years ago. Renee and I both have our fingers crossed that the boy's will sleep at least until the sun gets back to this side of the planet but we have our doubts.

After the boys were asleep Hobie decided to add himself to the presents under the tree. Who wouldn't want a big black stuffed furry rug.

Wednesday, December 23, 2009

The countdown has started... Day 406 23DEC09

Joshua and Jarrod are counting down the hours until Christmas arrives and they are starting to get excited. It is fun watching them start to get all wound up with anticipation.

The boys spent the afternoon playing with a new freind who moved into the house across the street last week. From the reports I heard from Renee they absolutely wore each other out running all over the place outside. It was a beautiful day to be out and about and I am glad they managed to snag some fresh air.

This evening Renee went with her father and the boys to watch the Lightning play. I unfortunately had to go work and missed the game. Joshua was doing okay for a while but the cold made his bones hurt and the noise really started to bother him. They made it through two periods of play before Renee decided to bring him home and put him to bed. The vincristine really seems to have hammered him this time. Hopefully he will start feeling a little better as the week progresses.

Tuesday, December 22, 2009

Avatar... Day 405 22DEC09

Joshua and I got to go with Jake and Jarrod this morning to see the new movie Avatar. We even went for the 3D version. How was it? It was as Joshua stated when the credits began to roll and I quote,"That was the most awesome movie I have ever seen!" We were equally impressed. It was for me very much like the first time I saw Star Wars in the the theater, I knew I had witnessed something new, exciting, and groundbreaking. Joshua did fine the whole time, no monster visits so far. We are thankful for that and frankly a little worried. It always throws us when Joshua does not follow the patterns he has established before. Any deviation from the "norm" just kind of sets us on edge a little.

Later in the afternoon after Joshua had helped Renee deliver a few presents around the neighborhood he started to crash a little. We are pretty sure it is a result of the vincristine he received on Monday. He got really tired and just wanted to lay down in our bed. He got up for a late dinner and ate pretty well before heading off to bed a little while later.

Jarrod helped me replace a part on my car this evening before it was his bedtime. He is really turning into a good helper and I am glad for the chance to spend time with him working on stuff.

It was a fun day for us guys and it gave Renee a chance to get some alone tine at home to get some stuff done.

Monday, December 21, 2009

Lightning up 2... Day 404 21DEC09

Joshua wore his Lightning jersey all day and it worked. They won their game tonight and Joshua was excited. It is so much cooler to watch a game when you have met the guys that are actually playing on the ice. Joshua's buddy Steven had a goal tonight as well.

This morning was a clinic trip. Joshua's ANC is holding good at 1782 and everything else looks good. He got accessed for labs and his vincristine and did great. He started his prednisone right after and so far the monster has stayed at bay. It has been quiet around the house...too quiet...

Hopefully he will be able to keep it under control over the rest of the week into Christmas. One day down. Four more to go.

Sunday, December 20, 2009

Cold Sunday... Day 403 20DEC09

Joshua had a rather uneventful Sunday. The weather has turned of cold, for Florida of course, so playing outside was off the menu. He did manage to escape for a bit and go shopping with Renee and her mom. The rest of the day we cleaned, rested, etc...

Tomorrow is clinic day with labs, vincristine, and the beginning of prednisone week. Just in time for Christmas... We are already bracing for the onslaught and hoping that at least he will not be in a murderous mood for the festivities on Christmas Eve and Christmas day. Only time will tell.

Saturday, December 19, 2009

Sleep... Day 402 19DEC09

Renee and I got a rare treat this morning. We got to sleep in. It was quite a change to wake up in a quiet house with just the sound of the cat pitter pattering around. We did our morning things and then headed in to my parents to meet the kids and have a bite of lunch.

Lunch turned out to be some delicious Alabama barbeque and let me tell you it was good! Barbecued pork is one of those things that you can either do really well or not at all and the restaurant that lunch came from knows how to do it right. Afterwards the kids and I helped get some chores and fix-it stuff done around the house. The weather was really nice today with much cooler temps and a nice breeze. Just right for outdoor work.

We came home for a bit and then headed over to Jim and Sally's to watch the boat parade and have some snacks. The boat parade was short but nice. The kids had fun playing while all of us adults hung out in the kitchen and munched on a variety of yummy treats. The kids were getting pretty tired so we herded them back into the car for the short drive home and then shuttled them right off to bed. A busy but fun day for all.

Friday, December 18, 2009

Allie was here... Day 401 18DEC09

Allie came to visit us today. She is really growing fast and has just managed to get cuter since the last time we saw her. Joshua and Jarrod love spending time playing and taking care of her. It is really amazing to watch our kids take care of our grand child. Jamie and Christian are doing great and are doing a great job raising up our little Allie.

After a fun filed afternoon here at home the boys took off to go and spend the night with Christian and Jamie. Joshua has been wanting to go over to their house for quite a while and he jumped at the chance. That left Renee and I with the evening all to ourselves. We went and had a nice dinner and got finished up with our Christmas shopping and then came home to watch the Lightning score a huge 6-3 win against St. Louis. Joshua's fav player Steven Stamkos had a good night with two goals. Renee is pretty sure the reason they won tonight was because Joshua wore the jersey that Steven gave him all day long. I think she may be on to something...

Thursday, December 17, 2009

Stars... Day 400 17DEC09

Joshua and Renee are television stars! They both appeared on a segment of channel 10's morning show Studio 10. The link for the video is here .

They were on the show with Sherry Tucker of Giving Hope Through Faith. She founded the organization after she lost her son Zachary to cancer and they had been a wonderful supporter of Joshua over the last year. They really made a difference in our lives and we are eternally grateful for that.

It was really cool to sit and watch my family on the TV this morning before I left for work. They both looked great and I was very proud of them. Joshua when asked what was special last year answered "LEGOLAND" and when asked what he wanted for Christmas... you guessed it "LEGO's". Jarrod went along and was in the studio while they were taping the segment. It was a great experience and now Joshua can cross TV star off of his list ;)

Wednesday, December 16, 2009

LEGO's and coffee... Day 399 16DEC09

Joshua and I demolished a beach house today and then built a coffee shop on the same piece of real estate. We even managed to get it done before lunch time hit. Joshua was bored you see because Jarrod was doing school work and he didn't have anybody to play with. So I suggested we take on a quick construction project and here are the results.

Okay, it's not exactly a functional coffee shop but it is pretty cool and we had a lot of fun building it together. If I could figure out how to make an espresso machine that small that actually worked I would have one installed in my car. I had to leave for work soon after we were finished but it was a morning well spent.

This evening we attended the St. Joseph's Hospital clinic;s big Christmas bash. We went last year and had a great time and this year was no different. Great food and lots of fun for the kids. It was wonderful to watch these children, many of whom we know very well, dance and play. The smiles that they bring to our lips are sweet as is the laughter at their merriment. They have all fought so hard just to stay alive... they deserve a party every day.

Afterwards it was back to work for me and off to home for Renee and the kids. A big thanks to all the wonderful nurses and Doctor's who take care of our children and who gave us a wonderful chance to celebrate tonight.

Tuesday, December 15, 2009

School day blues... Day 398 15DEC09

Joshua was singing the school day blues today. He is a little behind due to his unexpected visit to the TCA unit last week. So today was time to knuckle down a bit and start trying to get caught back up. Necessary but not much fun. He did pretty good, not too much resistance.

For a break this afternoon we decided to load up and go visit the manatee center to see how many have come in for the winter so far. On the way I noticed a small turtle in the middle of the road so we turned around to go pick him up. We managed to rescue him successfully, I use the term him but I really have no idea one way or the other. Joshua immediately wanted to know if we could take it home and put it in the back yard. We tried to explain that it was a wild creature and needed to stay that way but he was not hearing us at the moment. When we got to the manatee center we put the turtle in the grass on the other side of the fence in an area that is part of the preserve and told Joshua if he was still sitting there when we got back we would take him home. We proceeded to have a great time looking at all the fish and manatees that are staying for the winter. There were a bunch of manatee and several huge tarpon swimming around. Of course by the time we got back the turtle had vanished back into the wild where he belonged. Joshua was okay with that and didn't get upset. We left and came home to relax for the remainder of the evening. He was too small to play with Caesar anyway...

Monday, December 14, 2009

Busy boy... Day 397 14DEC09

Joshua was a busy boy today. Here is a breakdown of al the events he managed to take care of:

Clinic for counts which were awesome! His ANC is up to 949 and everything else is well up into the green. He also got his pentamidine treatment.

He went and had lunch with grandma and grandpa gandy and got to visit for a bit.

Back home for an afternoon round of school work which included reading and homework.

Off to Tampa for the Children's Cancer Center Christmas party with the Tampa Bay Buccaneer's D-Line. Those are some big dudes! I am over six feet and it is rare that I feel short around other people unless it is the guys that were there tonight. Santa was also in attendance and we all had a great time.

And finally a visit to see Miss Laura and Frank to deliver a special autograph from Laura's favorite D-line player. She was very excited and ready to hang up her banner in her Buc's room.

Back from Tampa to home, teeth brushed, PJ's on and into bed for a well deserved nights sleep.

Whew! I am tired from just typing all this... It was a fun filled day for the kids and Renee, and me;) Tomorrow will be a lot less hectic and I am sure the boys will take it easy.

Sunday, December 13, 2009

Sleepy Sunday... Day 396 13DEC09

Joshua and Jarrod both had a good time over at grandma and pa's. Even though they went to bed early they were both still real tired today. I think the events of the last week just caught up to everybody today. As a result we all rested for most of the day. The boys and I did do a little yard work this afternoon but nothing to strenuous. That about sums up the whole day... Nothing terribly exciting at all, just the way we like it.

Joshua is off to clinic tomorrow and we will see where his counts wound up after last week. Here's hoping they are back up over a thousand and we can get him started back on his chemo regimen. He is also due for another Pentamidine treatment tomorrow as well.

Saturday, December 12, 2009

Relaxing... Day 395 12DEC09

Joshua had a fun filled day. The morning was his usual kind of Saturday morning with cartoons and breakfast. After Lunch we headed in to see Grandma and Grandpa Gandy. Joshua got a little supervised tree climbing in while Jarrod helped Grandma out in the yard. Joshua also got a chance to showcase his Wii boxing skills for Grandpa while Jarrod put stuff up in the attic. Jarrod loves to help people out and he did a great job today. My dad is recovering from eye surgery so it was a great chance to brighten his day up a little and help get a few things done around the house.

We came home for a bit and then headed over to Renee's parents for a little dinner and the annual lighted boat parade. Normally they come and turn around right behind their house but this year they turned way early and we could only see them in the distance. Bummer.

Jarrod and Joshua decided to spend the night with Grandma and Pa since Taylor was staying as well. I am sure they spent some time playing on the Wii and then crashed. While they were having fun Renee and I went out to get a little Christmas shopping done before things get crazy...

Friday, December 11, 2009

Back Home!... Day 394 11DEC09

Joshua is back home! His ANC was a little under 500 at 440 but Dr. Wynn took pity on him and turned him loose late this afternoon. He made it home for dinner and we were glad to have him back. We will keep an eye on him over the weekend and he will get his counts checked again on Monday when he goes to clinic.

This morning Joshua shared his favorite breakfast, grilled cheese, with his friend Yan. I think we have another grilled cheese convert ;)

Jarrod had a great afternoon with his big buddy Jake. They went canoeing even though it was rather chilly today and had a lot of fun. Jake is a great guy and Jarrod really enjoys hanging out with him.

We are thrilled to be a whole family once again! This was one of our shorter stays and for that I am thankful.

Thursday, December 10, 2009

Holding steady... Day 393 10DEC09

Joshua is back in a familiar and totally frustrating holding pattern. His ANC dropped a scant 6 points and we are no closer to coming home than we were yesterday. Jarrod seemed to be feeling much better today and just had a slightly stuffy nose. I think he may have gotten a slight cold and he seems to be rebounding rather quickly. One sick child is enough thank you very much.

Jarrod spent the day at Grandma and Pa's, I spent the day at work and driving, and Renee and Joshua spent the day amusing themselves at the hospital. I got a chance to visit Joshua for a bit after work tonight. He looked fine and seemed to have tons of energy. If we can just get his blood to play ball we can get him back home where he belongs.

Wednesday, December 9, 2009

Hoping... Day 392 09DEC09

We are hoping that Joshua's counts rebound in the morning, his ANC had slipped to 220 this morning. He needs to get over 500 so they will release him to come home. Renee and I are both hoping that this is not the beginning of his past cycle of stagnating below 100 for a week or more. He looked great today and Jarrod and he ran each other ragged while I was teaching. We will see what tomorrow's lab results bring. Jarrod was feeling a bit under the weather tonight and I hope he is not coming down with whatever Joshua picked up at camp. I put him to bed straight away when we got home and I am hoping he will feel much better after a good nights rest.

Here are a few highlights from Joshua's day:

Joshua couldn't find any normal size LEGO's so he made do with these.

He tried breaking his buddy Yan out of jail...

Joshua talked to Santa by radio at the North Pole. All he asked for were more LEGO's... Go figure.

Tuesday, December 8, 2009

We're back... Day 391 08DEC09

We're back in the hospital again.

Joshua's fever went up to 102 at 2 in the morning and we had to make the call. Dr. O said bring him in (Renee was already packed). So we break our streak of stay at home days and now we have to start all over again after we get him back home. That makes our current record 81 days. Just a week short of three months.

His fever had broken by this afternoon and he was doing fine at the hospital. His fever needs to stay away for two days and his counts need to come up over 500. Tack that on to a clear run of blood cultures and we might be able to get him out before the weekend hits. Here's hoping this is a short stay and he is just fighting off some kind of minor bug.

One of the other kids that was at the same camp over the weekend is in the hospital as well, he came down with a fever on Sunday night. Interesting...

So we are gypsies again at least for a little while. Jarrod and I will settle into our old routine and Renee and Joshua will adapt to being at the hospital again. I am really hoping this is a pre-emptive strike so that we will definitely be home for Christmas this year.

Monday, December 7, 2009

Need a cold front... Day 390 07DEC09

Today was clinic day and we got a shock. Joshua's ANC was only 320. Quite a drop from last week at over 2000. Add to this the fact that he was cold and wet most of the time at camp and in contact with tons of people we don't know and we are a little worried.

After clinic Renee, Jarrod, and Joshua went over to Grandma Gandy's to help her decorate for Christmas. I got a chance to stop by briefly on my way to work and things were looking pretty good already. When they were finished they ran a few errands and then headed home.

Our fears were apparently well founded. Renee called me this evening to let me know Josh was running a fever of 100.1 then 100.4, later 100.6... We know this routine... It was down to 100.1 when I got home so we are on hold for now. We will be checking his temp every two hours and hoping against all hope that he does not continue to climb. We need a serious internal cold front right now. What we do not need is a stay in the hospital.

Sunday, December 6, 2009

Lightning Strikes... Day 389 06DEC09

After the events of yesterday the boys slept in until almost noon. Apparently they didn't get much sleep at camp the night before.

We spent a quiet late morning at home and then we headed off to the Lightning holiday party we had been invited to attend. When we arrived we found our names at the table we were supposed to sit at. Each family is adopted by one of the Lightning players and they give the kids gifts and spend the afternoon with them.

Who was our player you ask?

None other than Steven Stamkos #91 who is Joshua's favorite player of all! It was sheer luck that he was given Joshua as his kid this year. Joshua was thrilled!

Steven is a wonderful guy and took great care of Joshua. He also brought Joshua his favorite thing. LEGO. Jarrod's favorite gift by far was the Nerf N-Strike Elite game for the Wii. He refused to even put the box in the trunk on the way home instead opting to hold it in his lap. As soon as we walked in he got it set up and started playing. Joshua went right to work on his LEGO building. Gone were the sad children from the night before, both of them replaced by happy children having loads of fun.

So a big heartfelt thanks to the Children's Cancer Center, The Lightning Foundation, and our #1 hockey player Steven Stamkos!!!

You guys rock!

Saturday, December 5, 2009

Camp didn't go as planned... Day 388 05DEC09

It is a dark dreary very cold and late night as we tramp through the darkness with the boys and all their camp stuff headed to the car. Camp didn't go as planned...

We got a call form Jarrod after dinner. It appears that kids that are fighting cancer or are siblings of those kids still feel the need to pick on other kids for no good reason, steal their belongings, etc... Jarrod and Joshua both told us that they got picked on, cussed at, and were generally way past ready to get out and come home. Some time during the day someone went into Jarrod's bag and stole his cell phone. I sent them the following text message: "The phone you are holding in your hand was stolen." Not that they will ever read it or even care but it made me smile a bit. To be fair they did have some fun times and activities during the day. Although the choices made for some of the activities by the people in charge were not the best.

Joshua was asleep before we got back to the interstate and Jarrod was unusually quiet most of the way home. Renee was really upset and so was I. We expected their first camp outing to be a happy fun time filled with good vibes and better memories. Not a place they would come home from and ask questions like, "why is it that no matter where I go people always pick on me?"

The answer to that question is deep and would require a lot more introspection than I believe most people can assimilate. Sad, very sad...

I hear a lot that children need social interaction as a part of their development. That somehow being with their peers will help them to develop into productive and well adapted members of society. Balderdash I say.

So tonight the boys are with us, safe and warm in their own beds where they belong.

Friday, December 4, 2009

Camp Dreary... Day 387 04DEC09

It is a dark dreary completely wet evening as we slog through the puddles with the boys and all their camp stuff. We finally find their cabins and get them settled in. We turn to leave and Joshua comes running across the room to hug us goodbye, small tears forming in the corners of his eyes. After all it is his first time away from home at camp. As we finally leave Jarrod comes running out into the rainy night to give us both a big hug and say goodnight. He says he will miss us... We pat him in the back and re-assure him that he will be fine...


We got a glib see ya from Joshua and a little pat on the shoulder from Jarrod before he scampered back into his cabin.

The boys are spending tonight and tomorrow night at the Santa's Workshop camp put on by Faces of Courage. It is to be a weekend full of fun activities and a chance to hang out with kids their own ages both cancer kids and siblings. Although we had a hard time leaving them behind I am sure that they will have a great weekend and be full of fun stories on Sunday when we pick them up.

Thursday, December 3, 2009

It Happens... Day 386 03DEC09

Last night we had some major thunderstorms blow through. But that really isn't what made today interesting. I walked outside in the morning to go to an appointment. Joshua was inside with daddy, Jarrod, and his home health care nurse Rachel. Joshua was getting another IVIG treatment today. As I went to the car I noticed that our local paper, The Observer News, was lying in the driveway..soaking wet! I thought to myself, I bet you today is the day Joshua is on the front page....and sure enough Joshua was on the front page in a wonderful article talking about Joshua's trip to LegoLand. Julie had contacted us after we returned and asked to do an article. We knew it would be coming but I didn't expect the newspaper to be soaked!!!
We dried out the paper and also looked up the article online. Here's the link for the article

Trust me. It's easier to read than my paper!

Now, back to Joshua's treatment. It usually only takes about 6 hours for his transfusion. Today it took a lot longer. I had plans with the kids this afternoon while Lee was at work. Nothing worked as planned today and things got rescheduled. Rachel kept apologizing and I kept telling her that it was no big deal. And it really was No Big Deal! I didn't have an ounce of bad emotions in my body when I told her this. Some things in life are truly, not that important. In the end, everything was taken care of, Joshua and Jarrod were both happy and we had a great evening at home watching the Pixar short flicks. Life is about laughter and not making such a big deal about the things we really don't have any control over. One of Joshua's favorite songs is by Sugarland and its called "It Happens". Joshua will actually yell at me from the back seat on the way to the hospital "Mom, play our theme song" I turn the radio up really loud and the 3 of us sing in our loudest voices. If you don't know the words to the song here they are. Next time you hear it, remember that this is "our" theme song!

Missed my alarm clock ringing
Woke up, telephone screaming
Boss man singing his same old song
Rolled in late about an hour
no cup of coffee, no shower
Walk of shame with two different shoes on

Now it's poor me, why me, oh me, boring
The same old worn out, blah, blah story
There's no good explanation for it at all

Ain't no rhyme or reason
No complicated meaning
Ain't no need to over-think it
Let go, laughing
Life don't go quite like you planned it
We try so hard to understand it
The irrefutable, indisputable fact is
It happens

My trusty-rusty had a flat
I borrowed my neighbors Cadillac
"I'll be right back," going down to Wally World
That yellowed light turned red too quickly
Knew that truck the moment it hit me
Out stepped my ex and his new girl
("Sorry 'bout your neck baby")

But it's poor me, why me, oh me, boring
The same old worn out, blah, blah story
There's no good explanation for it at all

Repeat Chorus twice

Yeah, the irrefutable, indisputable, absoluteable, totally beautiful fact is...pshhhhh, it happens.

Wednesday, December 2, 2009

Angels Among Us... Day 385 02DEC09

Last night I received a very strange phone call from a gentleman telling me that someone wanted to do something nice for me. He didn't want to give anything away but he wanted to know if I would be by the phone this morning between 8:45 - 9:00 am.

I politely said "Okay" and hung up my phone, thinking to myself "Is this for real?" "Do people really do nice things for others these days?"

All sorts of things went whizzing through my head. Needless to say I did not sleep very well. 8:30 this morning my phone rang again...same gentlemen....asking if he could call me back in 10-15 minutes. He was just making sure that I was by the phone.

OK, now this is just getting weird!

8:49 am the phone rings again...same nice man..asks me to hold. I hear music playing and then I realize that I'm on hold with a local radio station, Q105.

OMG.....I suddenly hear about the Mason Dixon's Christmas Wish Fund, Inc and they are reading a letter sent to them about me and my family. Of course the tears are falling down my face when suddenly I'm speaking on the air live with Mason Dixon and he's asking me how I'm doing. I'm surprised I could speak! He asked about Joshua and then told me that he was giving us money from the Christmas Wish Fund.

Angels truly do walk among us and lift us up on their wings when we need help! Who is the truly wonderful angel that sent in the letter? She is a wonderful, long time friend who has stood by us. If you read the blog comments you know her already...It's Miss Laura!!!!

Thank you Miss Laura for the wonderful surprise today, Rylee and her family for yesterday's visit and all of our Angels that walk beside us everyday on this long path of healing!

Tuesday, December 1, 2009

24 more days... Day 384 01DEC09

Don't panic but there are only 24 shopping days until Christmas.

We begin the countdown to Christmas morning with Joshua doing good and everything a steady and sedate normal. The boys did their usual things today and the only highlight was watching mom and dad get their hair trimmed. Not exactly exciting stuff.

I have my sights set on December being just like November with Joshua's counts staying up and no hiccups, he has way too many parties to attend :)

Monday, November 30, 2009

Another Clinic Monday... Day 383 30NOV09

Clinic days on Monday seem to be our routine so far. Clinic...Good - Hospital...Bad.  I will take clinic visits over hospital visits any day! Joshua is doing great. Thanks to those "oh so wonderful" steroids, his counts are in the 2000's. Everything else is looking good as well. Joshua enjoys his clinic visits because he gets to see all of his "cancer" buddies and he also gets to hang out with the wonderful volunteers that play with the kids. It's also nice for me because while Joshua and Jarrod are off in the "art" room, I can hang out with other moms and just talk! It's good sometimes to be able to help the new moms and compare notes. Every child is so different yet they are all alike!

After clinic, we stopped by the Leukemia & Lymphoma Society to drop off Joshua's handmade Christmas Card. He was excited to see where they all hang out!

At home was another school day, followed by bike ride, dinner, a little t.v and then off to bed.....otherwise...Normal!

God, I love normal!  

Sunday, November 29, 2009

Worldwide corn dog shortage... Day 382 29NOV09

Joshua has eaten twice his weight so far in corn dogs. Nothing else seems to satisfy him right now. Thank goodness that the average annual production of corn dogs is slightly more than he is capable of eating. The last couple of days he has ben getting a little heart burn, go figure when your diet is made of ingredients no one can truly identify.

But like all of his food cravings this one too shall pass away and we will be left with the always challenging task of figuring out the next best thing. Meanwhile if you like corn dogs I'd be stocking up while you still can.

Jarrod and Joshua spent the morning playing with Taylor and Avery who just got back from a trip to Tennessee for Thanksgiving. I cleaned up out in the garage while Renee help down the fort inside. The steroid monster seems finally to be asleep in his cave once more. Not to be awakened until the week of Christmas. Yee Haw.

The boys took a bike ride before dinner and then we all hung out together for a while and caught up a little on the massive backlog on our DVR.

Saturday, November 28, 2009

A tree and an angel... Day 381 28NOV09

Jarrod woke up early this morning and got started putting up our Christmas tree. This is the first time he has done it all by himself and I must say that all those years as my assistant payed off. It warms my heart and freaks me out a little that he is big enough to do the job in the first place. It is both exciting and terrifying to watch your children grow up. It happens so fast.

Joshua came home a little while later and did his special job, putting the angel on the top of the tree. He had a good time spending the night out and came home refreshed and in a much better mood. We got the rest of the Christmas stuff down and Renee and the kids went to town decorating. The house looks very festive and Christmas is definitely in the air. I am hoping that this Christmas is a lot more "normal" than last year.

Friday, November 27, 2009

Black Friday... Day 380 27NOV09

Joshua will thankfully finish his round of steroids this evening and begin the return to the normal loving child he usually is. Renee informed me today that we have 120 more steroid days to get through before we are done. Not sure how we are going to make it right now but we will tough it out.

Renee decided to brave the mobs and actually went shopping this morning at 3:30. She was home by 6:30 and was really happy with what she managed to get accomplished. I'm just glad she likes to do things like that instead of me :) I can guarantee that the people at the stores do not want me shopping in the middle of the night on a few hours sleep. Not pretty...

The rest of the day was moments of peace followed by NATO style peace keeping until Joshua left to go over and spend the night with Grandma and Pa. Jarrod stayed home even though he wanted to go because Josh had a meltdown over him going. He is really growing up fast and we enjoyed spending the evening with him.

Hopefully Joshua will return tomorrow a little calmer and peace can be restored. Until next month.

Thursday, November 26, 2009

Thanksgiving 2009... Day 379 26NOV09

We came together today to celebrate Thanksgiving. We all met at Renee's parent's house: our family; Christian, Jamie, Allie, and of course Bella; this year we were also joined by Ahmed and Andrea who are friends of Christian and Jamie. We ate. We took a break. We ate some more. The food was wonderful and plentiful and we all got a great start on packing on that extra holiday poundage. Well actually we kind of started early but whose counting...

The kids took several boat rides because the weather stayed nice and we didn't really start to cool off until tonight. Joshua loves to drive the boat and as he comes from a long line of seafaring folk he does it not only with confidence but with style :) His favorite thing to do? Go fast.

We have so much and so many people to be thankful for this year. A great number of people have touched Joshua life and made this past year much brighter and happier than it would have been otherwise. Joshua continues to do good and we are so thankful for his progress in his treatment plan. Every day is another step closer to him being free of cancer forever and we are thankful for all of you that walk beside us.

Happy Thanksgiving!

Wednesday, November 25, 2009

Dreary... Day 378 25NOV09

Today was just a dreary rainy day. You know you are in for it when it is still dark at 9:00 in the morning. We have a cold front coming through and after the rain temps are supposed to drop significantly. The rain didn't really dampen Joshua's steroid outbursts much but he was pretty good most of the day. He is stuck on corn dogs this time around and is eating them almost constantly. The good thing is with all the corn dogs he doesn't need a laxative after the Vincristine :) He did start getting bone pain today which he has gotten after every Vincristine dose. It was in his shoulders this time instead of his hips.

Tomorrow we all celebrate that which we are thankful for. I wish all of you a wonderful day and a happy Thanksgiving.

We certainly have a lot to be thankful for.

Tuesday, November 24, 2009

This is your brain... Day 377 24NOV09

Remember the old TV commercial? This is your brain, this is your brain on drugs. Joshua had his first flash of rage this evening from the steroids. Definitely an uncontrollable anger thing with lots of screaming punctuated with a few well timed door slams.

When you open the door to his room ten minutes later to check on him an angry voice yells out one word...


Then in a flash the old Joshua will be back. For a little while...

Earlier in the calmer part of the day we all went to the Children's Cancer Center for a special lunch and presentation.Panera Bread doanted $100,000 to the Children’s Cancer Center of Tampa. The money was collected through the company’s Community Breadbox donation program in 24 bay-area bakery-cafes and matched by Covelli Family Limited Partnership, a franchisee of Panera Bread. Thats right a hundred grand! Wow! The food was really good and we got a chance to visit with our extended family.

Monday, November 23, 2009

Steady as she goes... Day 376 23NOV09

Joshua got up this morning and headed of to the clinic for a CBC and to get accessed. His ANC is just over 1100 which is great news, he is holding steady and the doctors seem to have found the right chemo dosing for now. While he was there he got another dose of Vincrsitine. Today is also the day he starts another round of prednisone so the evil steroid monster will be visiting for a few days just in time for Thanksgiving. I was teaching all evening but Renee said he was doing okay and hadn't had any meltdowns.

In other news Jarrod was selected as the Student of the Month by one of his teachers at the virtual school. Needless to say we were thrilled. He has done so much better since he started attending the virtual school and it has certainly made things easier on us during the crazy times.

Sunday, November 22, 2009

Run Trina Run... Day 375 22NOV09

We got up way before the sun did! I think we even beat the rooster this morning! We did it because Trina and Bobbie were running in the Women's 5K Marathon in support of the Leukemia & Lymphoma Society. They were also running in support of Joshua. As they passed by us we proudly yelled our heads off, cheering them on. They did great! We were very proud to have them out there supporting Joshua and showing off their shirts with Joshua's handsome smile on it.

It is in the times, like this morning, that we feel very blessed to have such wonderful Angels in our corner helping us and supporting us when we need them. THANK YOU!

Saturday, November 21, 2009

Not much... Day 374 21NOV09

Not much transpired today and that is a good thing in our world. Renee did a little painting, I hung a door and put up some trim. The boys took a bike ride on the golf course by themselves. We had spaghetti for diner. Seriously folks not much happened around here today. Which is just the way we like it.

Friday, November 20, 2009

5K Race... Day 373 20NOV09

Friday and an end to the school week for Joshua and Jarrod. Jarrod was dad's helper again today as they finished off the drywall job they have been working on. His dad and I are amazed that he is as big and able as he is. It seems like yesterday he was just tagging along behind his daddy and really couldn't help that much. My how fast they grow.

Joshua received his first assignment as the 2010 Boy of the Year for the Leukemia & Lymphoma Society. They have asked Joshua to make a drawing for their Holiday "Christmas" Cards. Joshua has all week to make one and he is really excited about it. Joshua and the family will also be out very early this Sunday morning at a 5k Race for LLS. My childhood friend Trina and her co-worker are running the 5k in honor of Joshua and to support the Leukemia & Lymphoma Society. Trina contacted me weeks ago and told me what she was planning to do the race. When I told Joshua about it a look of astonishment came over his little face and he said "For Me?" "Yes, for you sweetie!" You could feel the warmth coming from the huge smile that came across his face! When Trina told me we really didn't have to come because it was so early, I told her that we will be there, yelling, screaming, clapping, and cheering at the top of our lungs!

Trina, you and your co-worker, are completely Awesome! Good Luck on Sunday!

Thursday, November 19, 2009

Tree Climbing... Day 372 19NOV09

School this morning for both the boys like always. After school we headed over to my parent's house for lunch and the afternoon. They had pizza delivered for Joshua and he was very happy. During the afternoon amidst helping with yard stuff and other fun projects Joshua and Jarrod got some tree climbing in. Joshua is almost back to his old monkey like self although not quite a strong as before. He is nonetheless still totally unafraid of heights while I watch him shimmy high up into a tree. It was wonderful to see him climbing but at the same time I am crossing everything that he will not fall. It all ended well and he had a marvelous time and wore himself out. He even managed to get a nap in the car on the way home.

This evening the boys and I did a little more remodeling work next door before coming home to watch, at Joshua's request, Episode 5 of Star Wars. The boys love the fact that I know all the lines from the movie and can't figure out how. Maybe because I have seen it a zillion times and yes, I will admit to being a Star Wars geek from way back. It is fun to see them enjoy a film I enjoyed as a youngster even if Billy Dee Williams was a horrible choice for Lando Calrissian.

Wednesday, November 18, 2009

Bike Ride... Day 371 18NOV09

Joshua had a rather normal day today. Jamie and Allie came over to spend some time with us. Allie is so cute and is a joy to have around. She has started smiling and is getting spoiled terribly by all of us. Joshua and Jarrod both like taking care of her and are wonderful uncles.

Josh got his math homework done after they left and then he and Jarrod took a bike ride up to the park for a bit. They had a good ride and had fun playing with their friends. The rest of the evening was quiet unless you count the occasional spat between brothers. Joshua is back on a tuna salad or pizza binge, he doesn't seem to want much else right now. It will be interesting to see what he will want when he starts back on the steroids next week. Maybe we should plan on pizza for Thanksgiving...

Tuesday, November 17, 2009

Work then play... Day 370 17NOV09

Joshua got an early start today with his teacher who brought his report card. He did pretty good in all of his subjects. We were frankly kind of surprised considering the chemo fog and all the interruptions he has had this past year. It is a great sign that he is doing well and hopefully will continue to do so.

After school Joshua and Jarrod helped me get started on a remodeling project for our neighbors. Jarrod worked especially hard and was a great helper. He has such an eager spirit and a desire to learn new things. We managed to get a lot done today and I know I will be so sore tomorrow I may not be able to get out of the bed :) Old age and all...

While Jarrod and I were working in the afternoon Joshua's friend Hayden came over with his little brother to play for a good long while. They were having a blast playing the Wii when we got back home after we finished up. It is great to see Joshua having such a good time at home.

After dinner we read for a while and then trundled the boys off to bed for a good nights rest. We have more work to do tomorrow.

Monday, November 16, 2009

Clinic... Day 369 16NOV09

We all got up early this morning to take Joshua to the clinic for counts and his breathing treatment. His counts came back pretty good with his ANC at 990 which means no adjustments this time around to his chemo dosing. The pentamidine treatment went without a hitch and we were out of the clinic by just after 11.

When we got back home Joshua and Jarrod both got going on their schoolwork. Joshua did really well working with mom today and got a lot done. His teacher is coming the morning so he had a few things to get finished. After school was done we all took it kind of easy for a bit before getting dinner under way.

Later in the evening the kids and I went on an excursion to Home Depot to get a bunch of stuff for our next door neighbors remodeling project. It sure is nice to have two great helpers when it comes to getting stuff done. Besides I need to get them started thinking about all the tools they need to buy later in life ;)

Sunday, November 15, 2009

12 Months of Joshua... Day 368 15NOV09

To finish off our one year celebration I give you 12 months of Joshua. Each picture is one month apart from the previous.

What a journey it has been so far. Thanks to all of you who have shared our journey this past year and kept Joshua in your thoughts and prayers.

Stay tuned.

There will be more to come!