Sunday, August 30, 2009

We're Back... Day 291 30AUG09

Joshua is back in the hospital. He started to run a fever again today and his cough has been getting worse. When he hit 100.8 we called Dr. Tebbi and packed.

We got to the hospital around 9:00 and settled into our room. Josh got his port accessed, blood drawn, urine sampled, will get x-rays and probably a CT scan tonight and we will wait for results. Hopefully this will be one of our short visits, we have places to go people! We would have been at the clinic tomorrow for chemo anyway so he will just get his Vincristine on the TCA. Right now we are desperately hoping for negative cultures, good blood work results, and clear scans.

With any luck, which he so deserves, this will be a two maybe three day thing and we will be out in time to get ready for Rock Camp at Disney. In the meantime we are officially back in gypsy mode...

Saturday, August 29, 2009

18,250 Days!... Day 290 29AUG09

Can you imagine spending 18,250 days with someone? That equates to 438,000 hours. It also equals 50 years which is how long my parents have been married as of today. What a wonderful milestone to reach in their relationship!

We were lucky enough to celebrate their special day with them along with Christian and Jamie, Brandon who flew in from Atlanta, and Marcia and Aaron who came in from Columbus. We had a wonderful dinner and evening. Pictures to follow as soon as I can get them off of my parent's camera.

After convening at their house we were whisked off to dinner in a stretch Hummer limo which the kids just loved. They asked if we could sell our cars and get the hummer instead. We told them that while it was a cool idea they are just to hard to park. Dinner was at CK's which is a restaurant on top of a hotel that rotates once an hour while you eat so the view always changes. The food was great. Of course now the kids want a house that rotates and I heard them busily deciding how it would work later in the evening. Afterwards we all went back to my parent's house for cake. The cake was a recreation of their original wedding cake that Renee did by hand, it was even topped by the original bride and groom cake topper. Besides being beautiful it tasted really good. It was wonderful to spend time with all of the family, we are so rarely all together anymore flung to the four corners as we are.

Joshua did really good, he was pretty tired when we finally got home but is holding up well. He is still coughing a little but his fever has subsided. We will rest tomorrow and then be back in the clinic on Monday for counts and more of the dreaded Vincristine.

Friday, August 28, 2009

Pancakes unite!... Day 289 28AUG09

Today was the day of the mini-pancake revolt. The day the brand of frozen mini-pancakes that Dad bought but was not the brand that young Master Joshua wanted were set free. Liberated from their frozen prison.

As I had to go to work Renee's quest became the acquisition of the correct brand of aforementioned frozen cake like griddle treats for a very sad and rather inflexible seven year old. Alas she was unsuccessful after visiting two different grocers and had to counter offer with frozen french toast sticks. Joyfully the counter was well received and an all out conflict was avoided.

Joshua is starting to do a little better. His cough is staying with him but he had more energy this afternoon and evening and his appetite seems to be returning. We hope fervently that this is a sign that he is winning whatever battle has been raging inside of him. With luck he will be back to normal this weekend and be good to go for our Disney extravaganza come next weekend.

Thursday, August 27, 2009

Hurdles... Day 288 27AUG09

Renee took Joshua to the clinic this morning to get him checked out. His lungs were clear even though he has had a nagging little cough since yesterday. Hurdle number one jumped.

His counts were low, his ANC has dropped to 600 and his platelets are down to 79. Tripped over the second hurdle.

His hemoglobin was low enough that Dr. Tebbi wanted to top him off before the weekend so he got accessed and got a blood transfusion. Hurdle number three kind of cleared.

While he was there his temperature started to inch up but stopped at 100.4, just shy of a weekend stay. Hurdle number four squeaked as he went over it.

Needless to say they didn't get home until dinner time. Joshua's life is controlled by such small differences in numbers it seems. A tenth either way can drastically alter our plans with no notice whatsoever. For now he is safe at home and under the careful watch of the temperature police. All fingers are crossed that whatever he is fighting off is losing the battle.

I say this as I hear a few more tiny coughs from down the way...

Wednesday, August 26, 2009

Did someone say school this week?... Day 287 26AUG09

At least Joshua got one full day of school in before he decided to run a small fever. Yes, that's right, sometime in the past week he caught a bug. He came home yesterday so excited about school and by last night he had coughed about 14 times. How do I know that? Because when your child that has leukemia sneezes or coughs you pay attention. He woke up at 6:30 not feeling well so I personally went to the school to speak to his wonderful teachers this morning. About mid-morning he started to run a low grade fever of 100.2. As most of you know, at 100.4 we make the call! I have taken his temp every hour or two today as so far so good. Tonight he will sleep out in the living room close to us and we will watch his temp. In the morning We will take him to the clinic to get his counts checked. If he is fighting off a virus, we want to make sure that his counts have not dropped. So much for the first week of school. We gave it our best shot, especially Joshua. He absolutely loved being at school on Tuesday, seeing his friends and learning the new routine. He loves his teachers and can't wait to be able to make it back into the classroom.

Tuesday, August 25, 2009

First day of school... Day 286 25AUG09

Joshua had his first day back at school today. Ever since Jarrod's first day at school way back when we have taken a picture of the kids before the first day of school in front of the trees in our yard. This morning was no exception. Joshua was very excited to be heading back to be with all of his friends. Jarrod also started back to his virtual school this morning and spent the day getting acquainted with his new classes and teachers and preparing all of his binders, etc...

Joshua came home very excited and said he had a good day. He was pretty tired and school tomorrow is a definite maybe. We don't want him pushing himself too hard too fast. If he does go Renee is going to spend the morning at school helping him get acclimated.

We shall see how it goes... Day 285 24AUG09

Today went rather smoothly even though we got a late start and seemed to have a million things to accomplish. I took Joshua to the clinic for labs this morning. His counts are staying about the same as last week which is really good. While we were waiting for counts we took a walk over to the Hem/Onc Floor of the hospital and said goodbye to one of our favorite nurses. Ms Rochelle will be leaving and moving to New York. The entire family will miss her. She always had a way to get Joshua to laugh and giggle even on his "bad" days!  Good Luck Rochelle!
After clinic we went to Grandma and Grandpa Gandy's for some lunch and to get some things ready for their big celebration this weekend. On Saturday they will celebrate their 50th Anniversary! Lee and I are very proud to have a set of parents that have made it to 50 years of marriage. That is a major accomplishment in this day and age. Christian and Jamie were there as well and informed me that Lee and I will be grandparents quicker than we think. After her doctor's appointment today, they were told to come back tomorrow for one more sonogram. The baby has not changed much and is running out of room in Jamie's tummy. So after the results tomorrow, they will make a decision with her doctor to either induce or have a c-section.  
It was then off to run errands and get the extra school supplies that had been forgotten so we could make Joshua's open house at school. Joshua met both of his teachers and they are very excited to have Joshua in class. Joshua even got to see some of his friends from last year and hang out for a little while. He took it easy this evening and has his bookbag packed and ready for tomorrow totally loaded up with germ-x and masks. For now he will only attend school part time, but it's just enough to make us worry about germs. After meeting with his teachers, I am confident that we will put up a good fight against all of those germs to keep Joshua healthy.
We shall see how it goes...for the rest of the week...for Joshua starting school....for all the germs Joshua will come into contact with.....and definitely for the new grandbaby...we shall see how it goes!
That's the theme for the week!  

Sunday, August 23, 2009

Special Sunday... Day 284 23AUG09

Joshua had a big surprise for everyone at church this morning. It was his first time as an Altar Server. This past Friday I took Jarrod and Joshua up to the church, so Jarrod could teach Joshua what to do. Jarrod is an awesome teacher, because Joshua did an awesome job. I had several compliments from my fellow parishoners on how wonderful my boys were today. As you can guess, I had a big smile on my face. Jarrod was very excited to teach his little brother and also to have him serve mass with him. Joshua was also equally excited to be serving for the frst time and also to be younger than the normal servers. Since Joshua made his First Communion early he is allowed to start serving.
As you can tell they look like little angels! The halos may be a little crooked, but if you look real hard you can see them!

Dad says: We had our usual Sushi Sunday and I wanted to share a picture of Renee's beautiful pate in use.

Fun with Pa... Day 283 22AUG09

We didn't even see Joshua until dinner time tonight. He stayed over at Grandma and Pa's all day and had a great time. He was having some trouble with his stomach after dinner but it passed relatively quickly. He is still doing great and looking forward to starting school next week.

Friday, August 21, 2009

Fridays are a pain in the neck... Day 282 21AUG09

Joshua is doing great today. Renee on the other hand had a rather rough time. She took a walk this morning and evidently pinched a nerve in her back. Her neck was in a lot of pain and she wound up going to the chiropractor to get sorted out. It appears to have worked and she was doing better this evening. Joshua is spending the night at Grandma and Pa's, Jarrod was crashed on the couch when I got home. Hopefully tomorrow Renee will be feeling much more chipper and she won't have anymore pain.

Thursday, August 20, 2009

Germs... Day 281 20AUG09

Renee and I went to meet with Joshua's teachers for the next school year today. That's right, school. Josh will be going back to regular school part time starting next week and we are frankly terrified. We have no control over the germs at school. Truth be told we don't have control over germs anywhere but that is off point. If it were up to us we would keep Joshua cocooned at home but he wants to go to school. He misses his friends, misses being one of the kids. So he will go back part time on Wednesdays, Thursdays, and Fridays. Monday is clinic day and Tuesday he will do school at home. We met with both of his new teachers who were really quite nice and proceeded, I am sure mostly due to me, to scare the daylights out of them. I am pretty sure we have got them both seeing germs everywhere tonight. We didn't mean to alarm them but we look at the world a little differently now. They were very open to what we had to say and will do their best to help us protect Joshua as much as they can during the school day.

The rest of the day was rather normal. The kids relaxed around the house while Renee and I scuttled about doing the things adults do.

Joshua amused himself by eating cereal and watching a 3D movie.

Love the glasses!

Wednesday, August 19, 2009

Dinner and a Movie... Day 280 19AUG09

Joshua started the day with a little breakfast and a bit of tennis with Carly while Mom got some walking in. He spent the rest of the day with Grandma and Pa while Renee took Jarrod to get his annual physical. Lucky for Jarrod he wasn't due for any shots this year. He was very relieved. I am happy to report that the Doctor gave him a clean bill of health.

The kids decided to stay over at Renee's parents house tonight so after a late day for me at work we got to do something special. Dinner and a movie. We had dinner at her favorite italian restaurant courtesy of a gift card we had received. The movie was at home in our private theater normally called our living room. It was a great night and was the first time in quite a while that we have been able to go out just the two of us. We had planned to do this evening many months back but were postponed by a stay in the hospital. It is rare indeed that everything works out so well.

Tuesday, August 18, 2009

Relaxing day... Day 279 18AUG09

We all got a chance to kind of kick back and relax a little today. After lunch we headed over to Carly's house for a dip in the pool and some serious play time. The boys had a great time playing with Carly. Joshua really missed hanging out with her.

We were pretty sure it was going to get rained out but joshua managed to get a little tennis time in later in the evening. He went up to the tennis courts to practice a little with Carly after she got done with her lesson.

Joshua has started eating like a bird again and we are watching to make sure he does not start losing any weight. Food is such a roller coaster with him, he has a voracious appetite on the steroids and eats constantly and then a week later he barely eats at all. No happy medium with him...

All the swimming has definitely been helping him regain more of his strength. He is walking better and has definitely starting to get his upper body strength back. We will keep him exercising as often as we can.

Monday, August 17, 2009

In range... Day 278 17AUG09

Clinic day today. Joshua's counts are okay, his ANC is 852 and his platelets are 170. Not real great and not real bad either. The Doctors want his ANC to stay between 700 and 1400 while he is in maintenance. So although it seems low to me he is in range for his treatment protocol.
The boys had a quiet day at home after they got back from the clinic. I was at work until late tonight so I really didn't get to see the boys today except for briefly this morning. Renee and the boys began trying to figure out what Joshua wants to see when we go to the Camp Rock retreat at Disney World in a few weeks. He is really excited about it. I will keep you posted as it gets closer.

Sunday, August 16, 2009

Sushi Sunday... Day 277 16AUG09

Today was a major construction day for Joshua and Jarrod. After relaxing this morning they decide to build an entire LEGO town. It took most of the afternoon and they were very proud of it. Jarrod took some nice pictures including a short video of the train line around the city.

I took advantage of the cloudy weather today and got the yard mowed and put a dent in cleaning up the garage, a never ending task it seems. My kids never cease to amuse me. While I was working in the garage I took a break to come in and get some water, I opened the door to find Jarrod and Joshua watching TV. "Don't worry dad", says Jarrod, "It's the science channel." Not surprising knowing those two.

The rest of the day was rather uneventful. We did our normal Sushi and salmon dinner, Renee made a really cool new plate to use during kite camp. It is perfect for our sushi feast.

We are trying to get Joshua to drink more water and keep himself better hydrated. Tomorrow it is back to the clinic for a CBC to check counts, here's hoping everything is still high and nothing is slipping.

Saturday, August 15, 2009

Samurai Josh... Day 276 15AUG09

Joshua slept in this morning to catch up on his rest a little. He and Jarrod stayed up late last night watching a movie. Jamie and Christian came over right before lunch time and we all had a great day hanging out and playing. Josh was having way to much fun sword fighting with his new Wii Resort game.

He really gets into playing! Love his moves!

Jamie looks like she is about to explode! She still has 30 days to go but I just can not see how she can stretch anymore. The baby is very active and everything is going great. Christian and Jamie have been busy setting up and preparing for the upcoming arrival. It was great to have the kids over and I know Joshua loves having them around.

Joshua is continuing to do okay, he gave us a little scare today when he came in to the kitchen and announced that he had just gone to the bathroom and his pee was orange. After a quick questioning and a sample an hour later we determined he was just a little dehydrated. These little bumps in the road feel like so much more. It is like a monster hiding in your closet, you have the door bolted and you almost forget he is there until he bumps the door really hard and scares the daylights out of you. You just never know about monsters...

Friday, August 14, 2009

Birthday... Day 275 14AUG09

Today was my mother's birthday so we all headed over to her house to celebrate a little. I only stayed for a wee bit because I had to run off to work but the kids and Renee stayed for quite a while. Joshua and Jarrod took their new Wii Resort game to show to Grandma and Grandpa. Renee tells me that they had a good time and showed them all of the games they can play.

Joshua is getting stronger and he is very pleased. He still has problems with his feet but his upper body strength is on the mend. Before long I imagine he will be back to climbing everything in sight all the while making us really nervous :)

Thursday, August 13, 2009

Tadpole day 2... Day 274 13AUG09

Joshua spent another day playing in the pool and hanging out with his friends. We went over to the pool this afternoon with Jim, Sally, Cameron, and Jayden. It was a great afternoon. Joshua is doing okay and felling pretty energetic right now. The good days help push the bad thoughts back into the shadows, they never completely go away but it is much easier dealing with them while watching Josh swim and laugh. Lets hope more bright days are in store for him.

Wednesday, August 12, 2009

Tadpole... Day 273 12AUG09

Joshua spent another day playing in the pool and hanging out with his friends. He loves to swim and I am sure he would grow gills if he could. The exercise is great for him and will definitely help him regain his strength.

This morning he swam with Hayley and Rylee and this afternoon with Cameron, Jayden, and Rinaldo. After swimming he went over to play at Cameron's house. Jarrod designed a cool Geo-trax layout for all the littler guys to play with, he is becoming quite the engineer.

Tomorrow is more of the same. Joshua has lined up another play date that includes swimming. He is definitely making up for lost time.

Tuesday, August 11, 2009

Friends are awesome... Day 272 11AUG09

Joshua had a special visitor this morning. Carly and her mom came by and she got to stay and play for quite a while. They had a wonderful time doing all kinds of stuff. I managed to catch a video of them playing Wii tennis. Carly is quite good at the tennis that involves real rackets and running around in the heat and no less good at the Wii version. Check out the great moves they both have.

Carly's mom brought over her camera and I got a video of the kids swimming at her house yesterday. I wish I could have been there, it looked like a lot of fun. I particularly like the singing :)

Today felt really good, it was the sounds of kid's laughter and seeing Josh and Carly having so much fun just being kids. We have missed that these past long months. Josh is doing well and tolerating the Methotrexate he took on Monday so far. It will take a while for him to settle into the groove but he is doing great right now. We are looking forward to more good days and watching Joshua enjoy being seven.

Monday, August 10, 2009

Counts are good... Day 271 10AUG09

Joshua went to the clinic this morning to get a CBC to check his counts. I am thrilled to report that his counts are up and looking pretty good. His ANC was 2400! The next few months the doctors will keep modifying his meds until they can put everything in balance.

Later Joshua got to go play with one of his oldest friends Carly. He went over to her house to visit and Renee said he had a wonderful time. It is really wonderful that Joshua is able to be a "normal" little boy for a change. It does him a lot of good.

Sunday, August 9, 2009

Just plain hot... Day 270 09AUG09

Joshua had a wonderful time staying over at Jamie and Christian's. He and Christian got a little fishing in yesterday evening. He got them up early which is good practice for about a month from now.

He got home at lunchtime and spent the afternoon playing inside because it is just plain hot outside. I mean melt your shoes to the pavement hot. Like iron in a forge hot. Its hot. After Jamie and Christian left we did our normal sushi sunday dinner and then played on the Wii for a while. Josh is so good at all the games and is darn hard to beat. But he is a good sport and is always fun to play with.

While he was waiting his turn to play next Joshua wandered in and asked if he could make some music with my theremin. It is something I built while the kids were up at the beach house. Joshua really likes making music and he has a knack for it. I look forward to playing music with him for a long time. He graciously allowed me to film his performance.

Tomorrow Josh will head back to the clinic for labs to check and see how his counts are holding up. Let's hope they are still high and hanging in there.

Saturday, August 8, 2009

Semper Paratus... Day 269 08AUG09

While Jamie was doing girlie things this afternoon us boys went over to check out USCG Air Station Clearwater. Christian gave Jarrod and Joshua a wonderful tour of where he works and the helicopters he works on. It is a very impressive place and both the boys had a wonderful time. We are all very proud of what he does. Afterwards we went over to Christian's place and did a little swimming in the pool, played a little Wii, and put together baby furniture. All in all a wonderful afternoon.

Jamie's baby shower went great according to several eye witnesses in attendance. She was pretty tired out when she got home but she was all smiles. We managed to get most of the spoils unpacked and put away before we all headed home.

As promised here are a few pictures of some of the boy's things from Kite Camp. They had a blast making the spatter paintings and they will be hanging on the wall in our living room for anyones perusal.

As a special treat Josh is spending the night with Jamie and Christian. Hopefully he won't beat Christian too bad on the Wii.

Friday, August 7, 2009

Kite Camp and showering babies... Day 268 07AUG09

Joshua and Jarrod finished Kite Camp this evening. What a wonderful time they both had! We went over to the Cancer Center tonight for a family dinner and awards for all of the campers. The food was great and the crafts that the kids did over the course of the week were amazing. The whole week was amazing for both the boys and they had so much fun. A big thanks to all the people at the Cancer Center for everything.

Pictures to follow tomorrow if I can get them done around Jamie's baby shower. The boys and I are still a little unclear why a bunch of women want to get together and wash babies but hey what the heck. When in Rome. We are planning on hanging out with Christian while Jamie gets showered. Again, weird.

Hopefully the weather will be good tomorrow and we can get a little time in the pool over at Christian's apartment. That would suit the boys just fine.

Thursday, August 6, 2009

Bouncing... Day 267 06AUG09

The boys went to Pump it Up today at kite camp. It is a place filled with inflatable bouncy things. The kids got to run around and jump, slide, and have fun. Joshua went at it a little to fervently and wore himself out for a bit. After a little rest he was back up to speed. Tomorrow is the last day of camp and it should be a lot of fun for the boys, They have really enjoyed all the activities this week.

Wednesday, August 5, 2009

A little tired... Day 266 05AUG09

Jarrod spent another fun filled day at Kite Camp. Joshua went with us this morning but decided once he was there that he did not feel up to staying. I drove him back towards home and met Renee so she could pick him up. He was tired and the chemo is hitting him today. He spent the rest of the day with Renee at home playing. She said he did fine and was not totally worn out. They went back up to the Cancer Center later in the afternoon to see the juggler and trick performing dog that was the afternoon's entertainment. Jarrod made a beautiful necklace for his mom which she was proudly wearing when I got home.

Jarrod filmed his LEGO crane this evening and I present his work for your viewing pleasure.

Tomorrow it is back to Kite Camp, Joshua told me tonight that he will feel good enough to go tomorrow.

I hope he is right.

Tuesday, August 4, 2009

Disney Quest... Day 265 04AUG09

Joshua and Jarrod spent another fun filled day at Kite Camp. Today they got to go over to Disney Quest in Orlando for some serious gaming fun. They both had a great time and were full of stories when they returned.

Josh is doing well so far and his energy levels are good. The biggest challenge for now is keeping track of what pills he is supposed to take and when. Add to the mix that what he takes changes almost weekly and it takes some real thought to sort it all out. I am sure it will be old hat in no time. Renee made up weekly schedules and posted them on the cabinet door over his meds in the kitchen.

Monday, August 3, 2009

Celebrate.....We Started Maintenance!... Day 264 03AUG09

It may not seem like a big deal to others but to the Gandy Family, starting Maintenance is one of those small milestones that are celebrated! Joshua qualified today and received his first LP of Maintenance, along with Vincristine, Mecaptopurine and the dreaded Prednisone (only for 5 days, thank God!). Maintenance is Joshua's last phase of therapy out of a total of 5. It will last for 3 months and then keep repeating itself until treatment is over, which, unfortunately, is about 3 years from now. Chemo will now be mainly in the form of pills which makes it easier. Joshua's hair is also starting to grow back, but he is insisting that we shave it. He absolutley loves his bald head!

After Joshua had his LP this morning, I took him to meet Jarrod. We had dropped Jarrod off early in the morning at the Children's Cancer Center. This week they are hosting Kite Camp for the children. When we met up with them they were at Color Me Pottery in Hyde Park and starting to make some lovely creations. Joshua was still a little groggy but that soon disappeared. He had a wonderful day with his brother and some new friends. Kite Camp will last all week so I'm sure he will have lots of stories of the fun things they have planned. We will get our creations at the end of the week so we will make sure to show some pics then. I even got to stay later than the kids and paint something myself to celebrate our accomplishment today. Very theraputic and relaxing for me!

Tennis anyone?... Day 263 02AUG09

Joshua, Jarrod, and Renee were really tired from their trip and slept in late. It was a chance to get caught up on sleep a little. Christian and Jamie came over a little after lunch time and spent the day with us. Jamie looks like she will pop at any minute even though she still has a while to go . She has been doing great and our granddaughter is very active.

The boys spent the day playing and having fun. We went out and braved the heat because Josh wanted to play a little street tennis. He may not be able to run very well right now but he can still hit the ball awfully hard.

After an afternoon of playing it was time to eat. Joshua had requested a special dinner of salmon, sushi, and salad to bolster his counts for tomorrow. I was only to glad to prepare it for him. Jamie had her customary spaghetti, she is not real fond of fish lately.

In the morning Joshua is back to the world of cancer and off to the clinic to qualify. He will get an LP and chemo and then begin the maintenance phase of his treatment which will last for several years. THe rest of the week Joshua and Jarrod get to attend Kite camp sponsored by the Children's Cancer Center. They are both very excited about it. They will be doing lots of fun things all week long including a trip to Disney Quest in Orlando. Sabine, one of the nurses from the clinic will be there all week to keep an eye on the kids. It sounds like they will have a great time. Details to follow...

Saturday, August 1, 2009

The boys are back in town... Day 262 01AUG09

The boys are back in town. They got home early this evening after a long drive down from Port Huron. It is great to have them back home at last. Everybody is pretty tired and I am sure we are not going to get up at all early tomorrow. Joshua and Jarrod had a great time on their trip and look fantastic. Jarrod is already several shades darker than me and they both have that healthy, I played outside a lot, glow to them.

Tomorrow we will rest and unpack and do laundry and all the other things that follow a trip. Tonight though we are all under the same roof again safe and sound.