Sunday, February 28, 2010

Silver… Day 472 28FEB10

Today was a pretty normal day with the boys spending their time playing in their rooms or outside. Joshua was in a really great frame of mind today and it was like having our old Josh back. I hope he stays for a while. The highlight of the afternoon was the Gold medal matchup in hockey. The USA and Canada played a fantastic game and although Canada ultimately won the Gold they are all champions. We enjoyed watching the game.

Tomorrow is clinic day and a chance to see where Joshua's counts are now hat he has been off steroids for a week. Here's hoping there are right where they need to be…

Saturday, February 27, 2010

Turkey soup… Day 471 27FEB10

Today was a day of turkey soup, playing outside, art time, dinner, and curling with hockey for dessert. Renee made her wonderful turkey soup for lunch today which was perfect considering the morning started off cold and rainy.

The weather finally broke and the sun came out so the boys headed outside to play. Renee's mom came over and between the two of them and the kids they painted 24 wine glasses for a fund raising event for the Children's Cancer Center. After a little relaxing time Renee jumped back into the kitchen and made sweet potato casserole and some brownies to take to her parents for dinner. It was yummy. We settled in to watch the gold medal curling game and then headed home for the night so the kids could get to bed and we can watch the next to last olympic hockey game.

Joshua was excited about showing off his latest LEGO creation, Luke's speeder from the first movie. He did a great job building it and then explaining all the features to me in great detail.





Wipeout… Day 470 26FEB10

Joshua had a normal morning with school work and the like. After he got done it was off to play outside with Jarrod and DJ. That is where he was when I left to go teach late this afternoon. Apparently later on he had a little wipeout trying to impress his brother. Noting to serious, just a pair of scraped up knees. Renee said he was doing fine and he was sound asleep when I straggled in after work. I also understand he received a package from LEGO today that he has been waiting on for quite a while, it was backordered. Hope to have pictures to share tomorrow.

Thursday, February 25, 2010

Globe trotting… Day 469 25FEB10

This morning Joshua and I worked on his homework while Renee helped Jarod with his. The boys spent most of the rest of the day playing either out in the back yard or in the sun room.

Joshua and Jarrod got a special treat tonight. Late last night Renee was contacted by Shelley from LLS about tickets to see the Harlem Globetrotters pay tonight. Renee and I both remember seeing the Globetrotters when we were kids and this was a chance for our kids to see them as well. We bundled up after dinner and headed off to the Ice Palace for the game. The kids had a great time and Joshua was really having fun. The team is as funny and amazing as we remembered them from our childhood. It was a fun and unexpected ending to a normal day.



Wednesday, February 24, 2010

Cold Snap… Day 468 24FEB10

When I left for work at noon today it was a balmy and beautiful day. Four hours later the temperature had plummeted and a cold rain was blanketing the area. One thing we have learned for sure is that things can change quickly. Joshua is doing great and spent his day divided between dreaded school work and playing around the house. His appetite is holding steady and he has been eating okay the last few days. Strangely during the steroids cycle he did not eat everything in sight. In fact he didn't eat much at all. Not really sure why but each cycle is different. His tastes have shifted again as well so we are in the process of re-stocking the pantry with different things that he will actually eat. Tonight we all watched Olympic hockey and stayed cuddled up for warmth. Not a bad plan at all :)

Tuesday, February 23, 2010

Stuffed… Day 467 23FEB10

I was stuffed today. Unfortunately not from our great meal yesterday but in my head. I am the last one in the family to get the sinus thing everyone else has already fought off. Nothing like finishing last… It will run its course quickly I hope.

The weather today was gorgeous and the kids had great time playing outside. At one point I looked out into the front yard to find Joshua defending the realm against an invading shrubbery with his wooden sword and a plastic tray for a shield. The battle raged fierce but Joshua prevailed and was victorious.

We also had Miss Allie come and stay a bit this afternoon so her mom and dad could go out and have a little fun with their friends. She played, napped a bit, and went on a nice walk with all of us. Oh, and ate. That child definitely knows when she is hungry. Renee and I are really enjoying the whole grand parent thing, it is so much fun and we get to give them back :)

Monday, February 22, 2010

Carnivores rule… Day 466 22FEB10

Joshua started the morning with clinic for a CBC. His counts are over 3000 because of the steroids round and everything else looked normal. So a good clinic visit.

Afterwards he and Renee met us and the rest of the Gandy clan for lunch. Grandma and Grandpa Gandy had planned the event and made all the arrangements.

We got to be raging carnivores with an unquenchable appetite for meat for several hours.

Let me explain, we met at a restaurant called Boizao which is a Brazilian steakhouse. The basic idea is they bring meat to the table, on swords no less. Lots of juicy succulent delectable meat and you keep eating until you either explode or common sense just kicks in. Did I mention all the yummy meat? They have steak and sirloin and fillet and lamb and pork chops and chicken and sausages and… mountains of morsels of meat! Flame broiled to beyond perfection in a never ending deluge. The word delicious seems to fail utterly in describing the epicurean feast we enjoyed. The reason for our gigantic gorging meat party you ask? My mother wanted to do something special to celebrate the twin's birthday. I am pretty sure Joshua ate close to half his body weight and the rest of us... well lets just say that I don' think any of us will get on a scale for a while just to be on the safe side.

Brandon and Roxy with Miss Allie
One plate was not enough
One happy guy!
Birds of a feather...
Our kids

It was a great afternoon and one of the rare times that we are all together, four generations worth, which makes it even more special. A big thanks to all the wonderful Brazilian cows and lambs for their contribution.

Sunday, February 21, 2010

Family Day… Day 465 21FEB10

We had a full house today. Jamie and Christian were the first to arrive along with Miss Allie and the canine combo.

Brandon and Roxy were next and it was great to see them both, it has been a while since they were down to visit.

Ed and Mary Ann came over a little later with Taylor and Avery. Scott and Alecia showed up after they got off of work.


The kids played, the adults talked, Allie got spoiled by everybody. We had a wonderful day and enjoyed all the commotion. It is wonderful to be able to have all he kids at home all at once and spend some quality time with them. The boys love seeing their older brothers and showing off all the things they can do or have made. Brandon and Christian were both impressed with Jarrod's Technic LEGO Tractor and claw loader and I know Jarrod enjoyed showing them how it worked.
Everybody headed off after a filling dinner and great desserts thanks to Renee. Even Miss Allie got a double helping of carrots and squash. She is just too cute!

We settled down after everyone was gone to watch Team USA play Team Canada in hockey. It turned out to be a great match!

Saturday, February 20, 2010

Sunny Saturday… Day 464 20FEB10

Today was a pretty nice Saturday. The weather was cool but not too cold with lots of sun and the boys spent most of the day outside playing in the yard and the digging in the sandbox. It was nice to see them out having fun and enjoying the day. Renee spent all day rearranging the sun room and going through a bunch of old stuff. I helped a little and stayed out of the way a lot.

Tomorrow should be a busy day. All the kids are coming over to visit along with Renee's parents and Taylor and Avery. It is definitely going to be a full house but we are looking forward to seeing everyone. It isn't often that both of the twins are here together.

Hero's of Hope… Day 463 19FEB10

Joshua says he is feeling a little "Frankie" this evening. Must be because of the cool shirt he got tonight at the Children's Cancer Center where he was taping a video segment of the Pasta for Pennies campaign. Here is the information about it from their website:

Olive Garden’s Pasta for Pennies is a national fundraising program in partnership with The Leukemia & Lymphoma Society and the more than two million elementary, middle, and high school students who participate. Pasta for Pennies supports the fight against blood-related cancers, helps fund important life-saving initiatives and provides critical services to patients and their families.

Since 1994, Pasta for Pennies has raised more than $42 million to fight leukemia and lymphoma and to provide a wide range of services to patients and their families.
Olive Garden’s Pasta for Pennies has enjoyed the support and recognition from many celebrities throughout the years including actor Tony Danza, singer-actress Mandy Moore, the cast of the television series “Everybody Loves Raymond,” actress Diane Keaton and the U.S. Men’s National Soccer Team.

How it works:

Each year, school districts choose a three-week period when students fill collection jars in their classrooms with donations of spare change. The class collecting the most money at each school is awarded a pasta party delivered to their classroom by their local Olive Garden restaurant.
To learn more about how your school can take part in Olive Garden’s Pasta for Pennies, call (800) 955-4572 or visit www.LLS.org.

This is a wonderful thing and we are very proud to have Joshua representing them this year. The video will be shown at schools in our area to raise awareness and help kids understand what it is like to be a kid with cancer.

Joshua took his last dose of prednisone today so now all we have to do is wait for the monster to crawl back into his cave for another month. He did really good today and has the rosiest cheeks from the steroids.

Thursday, February 18, 2010

Donuts and chips… Day 462 18FEB10


Donuts and chips is about all Joshua will eat right now. Specifically though they must be glazed donuts and Tostito hint of lime chips. Nothing else is acceptable. Not exactly the diet of champions but for a few days it will just have to do.

Today was one of his better days and passed with only a few minor scrapes with the monster lurking inside. Joshua got some school work done and managed to get a little sunshine time in as well. Tonight we headed of to the Children's Cancer Center for a family night. The kids played and we adults snuck upstairs to do some cool arts and crafts stuff. We were painting wine glasses for an upcoming fund raiser and it was actually quite relaxing and enjoyable. The boys had fun playing with the other kids and were pretty tuckered out by the time we could get them to leave. Right now is a good time with all of the families doing pretty well, I wish it would stay like that forever...

Wednesday, February 17, 2010

Grrr… Day 461 17FEB10

Joshua was doing a lot of growling this evening. It's not really him it is the monster that lives inside of him for a week every month. He manages to keep it caged most days. Others not so much. He slammed his door tonight so hard that the light in the dining room moved. I have got to figure out a way to pad the door frame…

The bulk of the day he did okay. He even managed to find a few things to eat that he could handle the taste of. His favorite today was a grilled cheese heart attack sandwich from Sonic. If I looked at one of those things my cholesterol would go up 35 points but today it spoke to Joshua. If he will eat it we will feed it to him. So here we are again in steroid city, all eyes on Friday when the monster gets caged up for awhile and life goes back to "normal".

24 years… Day 460 16FEB10

Guess who turned 24 today? It sure doesn't feel like that much time has passed but it has. Brandon and Christian celebrated their birthday today. Christian was at our house with Jamie and Allie along with the canine contingent. Brandon and Roxy celebrated way up in Augusta, we wish they were closer. We had a wonderful afternoon being grand parents and spending time with the ever cuter Allie. She is such a happy baby and has the cutest smile. She recognizes us now when she sees us and breaks out into a big grin. It is adorable!

video

Brandon and Roxy will be down here to visit in a few days, it will be great to spend some time with them and celebrate the boys birthday again since they will be together.

Joshua did pretty good today. He was a little testy but nothing out of control. The biggest issue we had today was trying to get him to eat. Even though he is on steroids he did not have much of an appetite. The vincristine is also messing with his taste pretty bad and he was struggling to find foods that tasted right. I hope it begins to ease off tomorrow and he can get some nourishment.

Tuesday, February 16, 2010

On the mend… Day 459 15FEB10

Joshua's amazing recuperative powers seem to have kicked in. His clinic visit went well with no congestion in his lungs and no delays to his treatment plan. So he got accessed and got his vincristine dose followed by his pentamidine treatment. A quick stop for a little food and he was home early afternoon. His cough is lingering on but his temperature has stayed down.. His ANC was great at 1774, his platelets are down a little at 180 but he is still at a good level. Not the numbers we expected at all but we will sure take them.

We begin another prednisone week today and so far Joshua is doing really well. As time passes he seems better able to control the forces that the steroids set free inside him. He is such a remarkable young man! I often marvel at his strength and fortitude. With luck peace and serenity will rule the week and the steroids will be kept at bay.

Sunday, February 14, 2010

Happy Valentines Day… Day 458 14FEB10

We hope that everyone had a wonderful Valentines Day today.

Joshua is still coughing and cycles between getting a little better and getting a little worse. He had a pretty decent energy level today and spent a little time outside playing with his brother. This evening he started to rue a little fever but has not gone past 100.1 yet. Needless to say we will be keeping a close watch on him through the night. Renee packed their suitcase since we are in an official wait and see mode. We talked to Dr. Tebbi earlier and he told us the only thing we can do for now is to give him lots of fluids. He can not take anything for the cough.

If he and Renee are still here in the morning she plans to have him at the clinic bright and early so they can get him checked out and keep him isolated from the other kids. He is scheduled to get his pentamidine treatment tomorrow but we are unsure how the chest congestion figures in to that. If he doesn't get it it may throw his whole schedule off track. For now we will keep our fingers crossed and a watchful eye on the thermometer.

Saturday, February 13, 2010

Still coughing… Day 457 13FEB10

Joshua is still congested and coughing and seems to be getting more so. His temperature is up a little but not climbing. He spent the day alternating between resting and getting a little playtime in with his brother and Renee. This evening we all watched the olympics and took it easy. We will continue to keep an eye on him overnight and hope that he gets better instead of sliding in the other direction. Nothing like a waiting game to help pass the time :)

Friday, February 12, 2010

Third time is not the charm… Day 456 12FEB10

Late last night I was getting ready to go to bed and faintly across the house I heard Joshua cough. Not a normal clearing your throat kind of cough but one that sounded like he was congested.

It was still there when he woke up this morning.

We discussed, we waited a bit, we knew what the decision was going to be before we even started talking about it. We called the camp and let them know that we would not be coming to stay because Joshua was sick. This is the third time we have tried to get him to Boggy Creek and it was just not going to happen this time either. He was okay with it all, sadly he is used to having things change at the last minute.

The weather really socked in for the afternoon with a lot of rain and much colder temps coming through. It wound up being a good day to just stay inside and get things done around the house. In the middle of the afternoon Joshua got a haircut from his mom. He just wanted her to shave his head closer but somehow he wound up looking a little different.

So for this weekend we will be at home, we hope. His temperature was up a bit before he went to bed so who knows where the weekend will find us.

Thursday, February 11, 2010

Report card day… Day 455 11FEB10

Joshua got his report card when his teacher came this afternoon. He did really well and she was very pleased with his progress since last time. We were too. It is great that he is dong so well right now even with the chemo messing with his brian and his mood from time to time. I know that we are always concerned about his progress and today really bolstered us.

The rest of the day was pretty normal. We took a nice walk out on the golf course with Joshua before dinner. It was refreshing to be out in the brisk air and get a little exercise in. A good warm up for this weekend where I am sure we will be walking quite a bit. After dinner we settled in to play a game and then watch the Lightning narrowly lose to the Bruins. You should of heard Renee and Joshua yelling during the final seconds of play. Tomorrow we will start getting ready to go to Boggy Creek for the weekend. We are all excited about our trip!

Wednesday, February 10, 2010

Planted… Day 454 10FEB10

Joshua had kind of a rough day today. He was pretty tired from going to the hockey game last night and slept till after 10 this morning. He had a lot of school work to get done but he was having a hard time getting motivated. He said he had a headache and then a back ache so he spent most of the time on the couch with the heating pad. He did manage to get some of his work done but there is till a bunch to get caught up on before we got to Camp Boggy Creek this weekend.

This afternoon he was feeling a bit better so he helped me clean up the cars a bit and then planted a project that Nonna started with him many months ago when she was here. She had put an avocado seed into water and because she has a thumb as green as an emerald it grew and grew. Joshua was waiting for the weather to warm up a bit before he potted it and today was the day although it really hasn't warmed up all that much. So we now have a avocado tree growing in our sun room. I told Joshua we would move it outside when it touches the ceiling, which by the looks of things will not be too far in the future.



Tuesday, February 9, 2010

Hockey Night… Day 453 09FEB10

Joshua started today with a little time off. His teacher was later today than usual due to some testing she was doing with some of her older students. When she did arrive she cut the school day short even Joshua was protesting and begging her to stay longer and do more school work. Not.

The afternoon was rainy and the boys played over at DJ's house for a while until it was time for dinner and to get ready to go see some hockey. We were given a bunch of tickets to the game and went with a bunch of our friends. I took Jarrod, DJ, Chris, Peter, and George. Renee got really lucky and got to sit on the glass right next to the Lightning bench with Joshua, Tiffany, Nate, Preston, and Hannah. This was the first hockey game that Chris, Peter, and George have ever been to and they had a good time. Renee and Joshua had a blast down on the glass and took several good pics of the action. The Lightning won and the game was exciting to watch, we even got a good fight at the beginning. All in all it was a great evening and a fun chance to be with friends.





Renee had this picture to share from clinic on Monday. Just another typical day...

Monday, February 8, 2010

Counts are in… Day 452 08FEB10

Joshua had clinic this morning and his counts have risen back up to 1400. This is good news and means he can start back n his chemo with a slight dosage adjustment. It also means we can relax the germ patrol just a little. You know roll it back from wanting to steam clean everything we see to just good alcohol dousing vigilance. This is particularly good news considering we are set to finally get to go to Camp Boggy Creek this weekend. You may recall that the other two times we were supposed to go hospital stays prevented us from going. I firmly believe we will actually make it this time. Yeah!

We have been told by several cancer families that it is a really nice place to go and the boys and us are really looking forward to the experience.

Sunday, February 7, 2010

Superbowl Sunday… Day 451 07FEB10

We spent the morning relaxing and doing stuff around the house before we headed over to the Zink's for a Superbowl party. The kids had a great time playing, Preston and Joshua went non-stop the whole time we were there. Hannah had a run in with a door and wound up with a pretty good goose egg but she was okay. There was a ton of food and I ate way too much but it was worth it. The kids made it to half-time before we could tell that Joshua was getting tired so we packed up and headed on home to finish watching the game.

Tomorrow is clinic and a chance to see if Joshua's counts have come back up to a point where the doctor's will resume his chemo. Let's hope they have and we can get him back on schedule again although if he never had to take another dose of chemo that would be fine with us. Wishful thinking I am afraid...

Saturday, February 6, 2010

Miss Allie… Day 450 06FEB10

This morning Jarrod and I went over to Renee's parent's house to work on their dock. Joshua and Renee stayed at home because Miss Allie was coming over to spend the afternoon. They had a lot of fun hanging out and playing until we got back to spend a little time with her before Jamie and Christian got back. She is eating rice cereal and rolled over for us several times while she was laying go n her blanket. We were thrilled. Being grandparents has been a lot of fun so far!

After dinner we all watched the Lighting win their game in overtime. Renee and Joshua put their Lightning shirts on during the third period to help Steven get the tying goal. It worked beautifully. The weather has turned off cool again and we are in for a cold Superbowl Sunday tomorrow. We are heading over to the Zink's to watch the game and let the boys play.

Friday, February 5, 2010

IVIG and rain… Day 449 05FEB10

Today was another IVIG treatment for Joshua. The nurse showed up early this morning and got him accessed and hooked up to the IV pump. It is a normal sight to see Joshua shirtless with a tube coming out of his chest while he sits in a chair playing the xbox in the living room. Obviously our definition of normal may vary slightly from everyone else's but we adjust. Afterwards Joshua got pretty tired and had a bad headache which is par for the course with his IVIG treatments. The rain rolled in right after he got done and stayed far into the evening. Perfect weather to stay holed up inside under a cozy blanket, which is exactly what he did. Renee is still coughing and feeling a bit under the weather. I hope she is on the mend and will be better after a little rest this weekend.

Thursday, February 4, 2010

Just another Thursday… Day 448 04FEB10

Joshua had just another Thursday today. He started with his teacher this morning for school and had a good day. He did good on all his assignments and seemed to be struggling less than last week. Renee started feeling a little under the weather later in the day and unfortunately seems to be developing a cold. She must have gotten some of those mouse germs that Jarrod had. I hope she is feeling better tomorrow, we don't need her to get sick. The rest of the day was boringly normal just the way we like it.

Wednesday, February 3, 2010

Playtime… Day 447 03FEB10


Joshua had a great play day today with Preston and Hannah. They came over this morning and stayed most of the day. The kids played indoors. THe kids played outdoors. They buried each other in the sand box. They went other manatee center to see al the saline. They played hard and had a bunch of fun.

Jarrod was conspicuously absent today spending most of the day over at DJ's. I can't say that I really blame him what with all the activity going on and the fact that small children have enough reserve energy to power a small country and all.

Tomorrow things get back to the same old routine, school work in the morning, playtime in the afternoon.

Tuesday, February 2, 2010

Watchful… Day 446 02FEB10


Jarrod started running a low grade fever last night and complaining of a sore throat. We immediately hermetically sealed him in his room and began filtering the air inside the house. Okay we didn't actually do that but it might have passed through our thoughts at one point. He was feeling much better by this afternoon so we are hoping that it was just a minor bug. So far Joshua has no symptoms and has stayed nice and cool. Maybe it was just being tired from our Disney trip and the change in the weather that hit us on Sunday. For the short term we will be watching Jarrod and keeping and even more watchful eye on Joshua.

Joshua had an otherwise normal day working on his homework for school and playing around the house with Renee. Jarrod stayed sequestered until this afternoon and did his school work from his bedroom. With luck tomorrow will be more of the same with the addition of a play date with Preston and Hannah.

Monday, February 1, 2010

Tired out… Day 445 01FEB10

We all got up late this morning. The weekend finally caught up and we needed the extra bit of rest. After breakfast Renee and the kids headed for the clinic while I got ready and headed to work. Clinic today was just a blood draw for labs so Renee and the kids left right after to come back home. We didn't get his counts until later this afternoon.

What exactly were Joshua's counts this weekend while we were dragging him through the germ infested universe of millions of strangers in a world filled with hard surfaces?

A whopping 415.

That's right, below 500. Below the threshold when we will usually even take him to the grocery store. At the point where we become extremely paranoid about germs in general and start cleaning the door knobs and such at home. Low enough that they have temporarily suspended his chemo. We are hoping that we did an adequate job of sanitizing on our trip and that Joshua will not get sick. So far, knock on wood, he is doing fine. Let's hope he stays that way. Yikes the life of a cancer family is a bigger thrill ride than anything the engineers at Disney can cook up.

The rest of the evening was taken up with school work and general play stuff around the house. Our weather has turned off for the worse so I don't think the kids will get much outside time for the next couple of days.