Wednesday, September 30, 2009

Play time... Day 322 30SEP09

Joshua had a play day today! His friend and fellow leukemia patient Preston came over with his mom and little sister Hannah to have some fun. I understand that they had a great time playing and doing all the things that little boys enjoy doing. Unfortunately I had to scurry off to work right after they arrived so I missed out on all the fun.

It was nice to hear that Josh had a good day and luckily the weather has turned a little towards the fall direction and they were able to play outside for a while. Today gave us a little tickle of hope that cooler temperatures will prevail.

Tuesday, September 29, 2009

School time... Day 321 29SEP09

Joshua's homebound teacher came out this morning and he did great working with her. He was very calm and did well in all of his subjects. He spent the rest of the morning getting all his homework done and in order. Renee said he worked well and didn't have any problems. It is good to see him not struggling with his studies and progressing well.

The rest of the afternoon he spent preparing for Preston's visit tomorrow. He is very excited to have a play date. It is tough on Joshua not to be able to do things like other children. He can get really depressed when he is stuck inside and isolated from the outside world. I am sure that they will have a blast.

Holding steady... Day 320 28SEP09

Joshua's labs came back good. He is holding steady from where he was when he was released from the hospital. His ANC and Platelets were almost the same. This is good news and is something we would definitely like to see continue. It took a while to get his vincristine delivered from the pharmacy but it finally arrived and we were set free for the rest of the day. We had lunch at Chili's to support the Cancer Cure drive. I mentioned to the waitress that Joshua was one of the kids they were raising money for and she told the manager who came out and gave Josh a nice t-shirt. It was a thoughtful gesture.

The rest of the afternoon we spent at home with the kids getting school work done and dealing with the rather sudden arrival of the prednisone monster. You see Joshua is back on prednisone for the next five days and it took no time at all in affecting him. Luckily this will be a short five day visit and he should be right as rain in a week or so. The vincristine he got today made him rather tired and he spent most of the evening curled up on the couch with the heating pad. He seemed to be feeling better when he trundled off to bed. Tomorrow is a visit from his homebound teacher first thing and another day of resting up.

Sunday, September 27, 2009

A walk in the woods... Day 319 27SEP09

Joshua was out most of the day spending time with Taylor, Avery, Jarrod, and Pa. Pa took all the kids (brave man) to Lettuce Lake park for walk on the trails and a chance to scope out some wildlife. From what I hear they saw, among other things, an alligator close by the boardwalk. Luckily it has been so hot the alligators are not interested even when tasty child size snacks parade by. It might also have been his inability to climb up onto the boardwalk in the first place.

For Renee and I it was a quiet afternoon at home. I did yard work until the afternoon rains hit and then we just relaxed until the kids got back.

Dinner was our usual sushi Sunday affair. Jarrod and I found some really great fruits for dessert. Food pictures courtesy of my able assistant Jarrod.

Tomorrow morning we are all heading off to the clinic for labs and vincristine. We are hoping that his counts have stayed steady and he is not sliding downhill again. After clinic we are going out to lunch to help support National Childhood Cancer Awareness Month courtesy of a gift card we received from our wonderful friends at Giving Hope Through Faith.

Saturday, September 26, 2009

Crabby boy... Day 318 26SEP09

Joshua was okay all day but got really crabby this evening. Today was pretty much a day for al of us to relax and really not get much accomplished at all. We picked up a little but spent most of our time just kicking back.

For dinner Jarrod and I had scored a really good deal on crab legs at the grocery so we broke them out and got down to business. Renee expertly cooked them up and then we all tucked in and go to work. This is a serious seafood family. Joshua can eat crabs like an old pro, he is a chip off the old shelling machine. Did I mention that he and Jarrod absolutely love crab legs. Would probably take them over chocolate or ice cream. It was a fine meal and a great way to end a relaxed day.

Friday, September 25, 2009

Relax... Day 317 25SEP09

Joshua had a great day today. He worked on school work and then received another visit from his big brother, Brandon. Brandon brought with him more Nerf artillary for Joshua and Jarrod. They spent the next hour playing and goofing off. They really miss Brandon when he is not here.

After Brandon left, I took the boys over to Carly's house to go swimming. It was raining when we arrived, but that didn't stop them from jumping in the pool. Joshua loves to spend time with his friends especially since he doesn't get to see them at school. We had a great afternoon and a relaxing evening. More ralxation planned for the weekend!

Thursday, September 24, 2009

All the kids at home... Day 316 24SEP09

The first half of Joshua's day was rather normal. He did some school work and played in his room. After lunch he started his vigil for his older brother's arrival. He must have checked the front windows a hundred times to see if they had pulled into the driveway. Way before they showed up Taylor and Avery came over with Renee's parents. Uncle Scott stopped by for a bit and we got a chance to wish him a happy birthday. Finally Josh had somebody to play with! And play he did, non-stop. It wasn't very long until the rest of the kids showed up and our house was full of the sounds of adults, kids, and our new grand daughter. We had a great dinner that Renee had prepared and enjoyed celebrating Roxy's birthday. It isn't very often that we have all the kids under one roof and we miss it. Renee and I have moved up a rung on the parenting ladder, now we make a home note only for our children, but their children as well. It is a very nice feeling to be able to do that. We are all really tired from all the activity but it is a good tired and carries with it a smile.

Our kids

The Gandy men!

Uncle Brandon and Aunt Roxy

What a great uncle!

Wednesday, September 23, 2009

Brain fuzz... Day 315 23SEP09

Joshua had a case of brain fuzz today and was having a tough time with school this morning. Not sure if it is from his restarting chemo or just an off day for him. Hopefully it was just an off day.

While I was at work today Renee took the kids out for a little shopping to pick up a few things. The rest of their day was pretty normal with not much to report. All of our kids will be coming over tomorrow with their kids. Man that sounds weird to say it that way. Anyway Brandon and Roxy are in town so they are coming over with Christian, Jamie, and Allie. It will be a full house but it's great to have all the kids together for a little while. Joshua and Jarrod are excited about Brandon and Roxy coming to visit.

School day... Day 314 22SEP09

Joshua had school this morning with his homebound teacher. He seemed to be doing real well, we haven't had a visit from the chemo fog in quite a while. Hope it never visits again. He has been working on school stuff in the hospital when he is stuck and he is at least not slipping behind. We are in no hurry to send him back to "regular" school anytime soon.

I like having the kids home with us all the time. I consider us lucky to have the opportunity to spend as much time with them as we get to. Sure there are days when it would be nice to get a break or maybe sneak a nap in the afternoon but all said and done it is a great thing.

Joshua is feeling good so far and his chemo is back in full swing. Renee re-calculated and re-dispensed all his meds for this week and the weeks to come. It is a dizzying amount of pills and doses that change depending on the day and where he is in the treatment cycle. It will become second nature I am afraid before we are finished with maintenance.

Tuesday, September 22, 2009

Back on track... Day 313 21SEP09

Joshua went to the clinic this morning and got his counts checked. Everything looked good and he resumed taking his chemo today. It is a relief to finally have him back on schedule although it is a little weird still to be happy that he is taking chemo drugs again. In the long run it will somehow all work out.

While Josh was at the clinic Renee got him caught up on his bravery beads. When he got home we started stringing them up. His string of beads is getting longer and longer. It still hangs in my line of sight as I write this always serving as a reminder of just how tough Joshua is. I look at it often every day.

The rest of the day was consumed by school work and general household mayhem. Tomorrow Joshua will get a visit from his homebound teacher in the morning and I am sure send the rest of the day being a "normal" seven year old.

Sunday, September 20, 2009

Not much today... Day 312 20SEP09

We didn't do much today. The boys played and did the kind of things kid do. Renee and I did a few little projects around the house. It was really just a day to kick back and catch up on our chillaxin skills.

As it is Sunday we had sushi as part of dinner. Joshua is still being very picky about what he likes to eat but we manage to find things to keep him happy.

In the morning Joshua is off to the cliic to get a CBC to check his counts and if he is still over 500 on his ANC we will restart his chemo. Hopefully all his counts have stayed up over the weekend and he is where he needs to be.

Saturday, September 19, 2009

Cleaning up... Day 311 19SEP09

We started our day early this morning continuing a family tradition doing Coastal Cleanup. We have been going every year since Jarrod was Joshua's age. The kids really enjoy doing it and it is a wonderful way for them to directly help the environment. It never ceases to amaze us just how much trash and detritus people leave in their wake.

After running some errands we returned home just after Jamie, Christian, and Allie had arrived to spend some time with us. Allie gets cuter by the day and is doing great. We enjoyed our first day at home as grandparents.

This afternoon we all headed over or Avery's birthday celebration. Alecia had lots of good nibbles to enjoy and Joshua and Jarrod both played themselves completely out. It was really nice to see Joshua running around, at one time pretending to be a witch flying on his broom, the yard and enjoying himself. It is a marked change from watching him run up and down the hallways on the TCA at the hospital. I like this much better. He has been feeling good so far and will return the clinic on Monday for labs and chemo if his counts have stayed up.

Friday, September 18, 2009

Lightning strikes... Day 310 18SEP09

Joshua had a great day today. He got lots accomplished this morning before his teacher showed up for school. It was cute to see him playing in his room with the radio going and him singing along. He even managed to get it cleaned up and organized.

After school it was play time again until time to leave for the hockey game. The Children's Cancer Center got free tickets for tonight's game and called Renee to see if we wanted to go. I had to work so Renee took the kids with her Mom and Dad. They had a great night! Josh got a puck from one of the Atlanta players along with his friend Sean.

The kids and Renee were all over the rink even had a guest appearance on the JumboTron from the lightning bench.

Joshua gave an impromptu press conference from the Lightning press room right before hand.

All in all it was a great evening and a wonderful change from all the boredom of the past couple of weeks. To top it all off the Lighting won in overtime...

Thursday, September 17, 2009

Escaped!... Day 309 16SEP09

I'm not quite sure if the doctors let us out because they thought Joshua truly is well enough to go home OR if they kicked us out due to all the mischief Joshua was getting into! The good thing is that Joshua's anc has reached 482 and we are back at home and not due to go into clinic until Monday.

Joshua was either bored, frustrated or just mad last night because he decided to do something that totally shocked his father and I. Late in the evening he asked me how to spell "cancer". So I told him. I asked him where he was writing the word and if it was in my journal. He said yes. I should have investigated a little more, but I was busy working on other things. When Lee showed up late last night to see Joshua and wish him a good night, he noticed where Joshua had actually written the word CANCER.

Drum Roll Please....................................Joshua wrote


Inside I wanted to laugh and cry. He was right! Cancer does Suck. But then I wanted to strangle him because he wrote on the hospital wall and he even signed his named to it! I also knew at 11:30 at night I was the one that had to try and clean it off!
So this is what I told Joshua.....First, A little word of advice. If you are going to vandalize a wall which is totally wrong, don't sign your name to it. And Second, What were you thinking? Joshua, of course, was upset that he got into trouble, and he did realize that it was wrong. He has never written on a wall before, and if he would have written that on his bedroom wall at home I would have left it up!

Sometimes you get so caught up in the clinic visits, hospital stays, blood draws, port accesses, xrays, chemo, pills, platlets, HGB, WBC and every other thing that goes with cancer. that you lose sight of how your child is actually feeling deep down inside! Joshua is so brave and strong sometimes that he doesn't really let his true emotions show. If I had my way, I would let Joshua write Cancer Sucks Mom on everything he could. Cancer not only affects the child but the entire family. We not only have to deal with our child but the other problems that go with it, like trying to figure out whether we make the mortgage payments or buy food for the family. We deal with trips that are cut short or even canceled at the last minute due to fevers and the hundreds of hospital bills we receive. Our family is holding strong and the love and support that we receive from our family and friends is overwhelming sometimes. We are very grateful to have all of you in our lives.

I would like to remind everyone that the Month of September is Childhood Cancer Awareness Month. I know that times are tight but please consider contributing in some way to help the children and their families that have been touched with cancer. There are many wonderful organizations that we have mentioned in the past that have helped our family a great deal. Also, If you would like to make a direct donation to help Joshua we will be putting a donation link on the blog in the next week or two.

I would also like everyone to send out some very special prayers to our cancer families at St Joseph Hospital. Please include them all! This week has been very rough on a couple of families and when one family is affected, we are all affected. Please pray for all of our angels!

Almost there!!... Day 308 16SEP09

Joshua's ANC doubled over night and he is now 295. Hopefully tomorrow Joshua will be out of the hospital and back at home. He started out the morning with his port not working properly when it came time to draw labs at 4 a.m. He went later in the day to have a port study done. Joshua thought it was pretty cool. They injected a contrast dye into his port line and filmed it going through the line. He could see his heart beating and his lungs inhaling as it went. Joshua did a great job and he even got a special picture of it. I was just happy and relieved to see his beautifull lungs filling with air and his heart beating and no tumor in sight! The doctor came out right away and told me that everything was ok with his line. He could have had a small clot that was causing a blockage but it was working great now. That is a big relief. We don't want his port to start malfunctioning. It causes Joshua a lot of pain when they can't draw blood and they are pushing down hard on it. Also being accessed 4 times during a 12 day stay is a bit ridiculous.

Joshua was the grand prize winner at bingo today

Tuesday, September 15, 2009

Nerf Wars... Day 307 15SEP09

Joshua and Preston had a huge nerf battle this morning at the hospital. Bystanders described it as a hail of nerf darts raining down from all sides. Preston was in for clinic and brought all his nerf gear so he and Joshua could play.

Josh was supposed to get his first pentamidine treatment today but it was postponed until tomorrow. Hopefully it will go well and not take too long. This is the third drug they have tried as a prophylaxis against pneumonia. The first two had undesirable side effects, not that there are truly desirable side effects, so they were discontinued. But as they say the third time is the charm. Hope whoever they are know what they are talking about.

Another day pass was granted and Josh and Renee scooted on home for a while. It is a crazy life that we lead, all these comings and goings. While he was home this afternoon Josh got a visit from his new homebound teacher who will come in a work with him each week. It will be good for him to get back on a regular schedule of schoolwork, keep his brain exercising.

As his ANC only climbed to 128, although that is twice the one from yesterday, he is still stuck in the all too familiar holding pattern. With luck he will double tomorrow and keep doing so.

Monday, September 14, 2009

Day pass and dinner take 2... Day 306 14SEP09

Joshua got another day pass today and came home to do homework and generally just escape from the confines of the hospital. His ANC has dropped again to 68 so he still has to go back and spend the night. He has to hit either 500 or 14 days according to Dr. Tebbi this morning before he can get released to come home. So we are settled in yet again for the long haul and being a displaced family. We handle the logistics of being apart like the seasoned veterans that we are, it is the emotional part that really takes a toll on us the longer we do this. It has been really nice to have Renee and Joshua home these past two days. We have been able to eat together and sit together, talk and spend time with each other without the interruptions and distractions that plague us in the hospital. Tomorrow we expect more of the same. Joshua should get a day pass and be home mid-mornig. His new homebound teacher is supposed to pop in around three to get him started back on schoolwork. Meanwhile life goes on and we will hope that we are reunited on more than a temporary basis very soon.

Sunday, September 13, 2009

Day pass and dinner... Day 305 13SEP09

I got a call from Renee this morning to come and pick them up as Joshua had gotten a day pass. His counts have actually dropped to 79 but Dr. O took pity on him and let him escape for a bit. It was great to have him home for a little while where he had a chance to relax and play with his brother. Jarrod and I had been saving a culinary surprise for Joshua, his favorite crab legs. We had found a really good deal on them last week and popped them in the freezer until Joshua could get home. So I made sushi and Renee cooked up the crab legs and we feasted. It was a great dinner and Joshua abandoned grilled cheese and really tucked in. He ate a huge dinner and was quite satisfied when he was done. Josh is a crab shelling machine and he really enjoys going to work on some.

Unfortunately after a hot bath it was time for him to return to the hospital and get hooked back up. It looks like we have several more days until he will be able to get home for good. It is just a matter of his counts climbing back up. Besides getting him out of the hospital we need to get him back on chemo, we are already two weeks behind on his treatment schedule. He also got his test results back today and we are discontinuing the Dapsone. He will get monthly doses of nebulized pentamidine instead. Its one less pill for him to take everyday.

Jamie, Christian, and Allie got to go home this afternoon. Both Jamie and Allie are doing great and I am sure they are happy to be back in their own bed. We are going to give them a few days to get settled and then go visit and see the new nursery.

Saturday, September 12, 2009

Duck weather... Day 304 12SEP09

Today was a day perfectly suited for ducks and other web footed creatures. It has rained almost non-stop for most of the day. Joshua is still stuck with his ANC only up to 128 today. At least it went up a little. Tomorrow they are going to run another specialized blood test to see if he is handling the Dapsone that he takes okay. A lot of kids get cyanotic when taking Dapsone and Josh has been looking a little pale lately so Dr. Obzut just wants to check and see how he is doing. Today marks a week in the hospital and Joshua is definitely starting to get stir crazy. I am afraid we are still several days from getting him back home.

Christian, Jamie, and Allie

Uncle Joshua

Grandma loves her Allie

Allie and Jamie are doing great and will get to go home tomorrow. Joshua got another day pass and we went to visit this afternoon. Joshua is already a wonderful uncle and really enjoys holding and talking to little Allie. He has so much that he will be able to teach her as she grows up, he is already wise far beyond his years. Jamie asked me to say hello to everyone. I think she is suffering from blog post withdrawal. Up till now she has never missed a day leaving a comment. I am sure she will get caught up after she gets settled safe and sound in her own house.

Friday, September 11, 2009

Friday... Day 303 11SEP09

Just a quick update for tonight. Joshua's counts have dropped to 92 so he is still stuck but we are hopeful he will start to turn around soon. Allie and Jamie are doing great. I went by this afternoon to see them and spend a little time holding Allie. She is adorable! No new pictures but I have been promised a bunch this weekend as soon as Christian can download them from the camera. I will post them as soon as I can.>

Thursday, September 10, 2009

It's A Girl!!... Day 302 10SEP09

It is my great honor and privilege to welcome Allie Nichole to our family. Our first granddaughter was born at 12:17 and weighed in at 8bs 15 oz. She is truly beautiful and a wonderful addition to our clan. Jamie did wonderfully and is healing and resting well. She wanted me to thank everyone for their support and all the wonderful things that helped get her and Christian ready for this momentous day. Allie is the picture of health and is doing great tonight. We all got a chance to go and see her briefly this evening. The reality of becoming grandparents is still quite new to us but it feels good. Allie is also blessed with five great grandparents, two great uncles, three great aunts as well as a great great grandmother. That's five generations folks! Wow!

Uncle Joshua

Uncle Jarrod

Great Grand Pa

Great Grand Ma

We are very proud of Jamie and Christian and know that they will be amazing parents and unwavering caretakers of their new treasure.

Joshua and I had a good night last night. The morning could have been a little better... We got a rather early wake up call by Dr. Tebbi who pronounced that Josh was going to need another transfusion of red blood. His hemoglobin counts had slipped too close to the refill mark. As Dr. Tebbi put it, "Josh has frequent flyer miles with the blood bank." The transfusion went off without a hitch and Joshua did not have any allergic reactions. He is still holding on to a low ANC (it was only 128 today) so coming home is not an option anytime soon. With luck, and if he follows course, he should start to turn around in a day or so. I am hoping that we can get him home for the weekend.

The newness of a baby's life is something that always pulls strongly at my heart strings. The wondrous splendor of the architecture of a newborn reminds me that although there is much ugliness in the world there is perfect beauty in the universe. Amidst the cacophonous din of the world a newborn is a perfect note sounded clearly. Welcome to our world Allie! Your note is crystalline and rapturous! Remember always that we love you.

Proud Grand Parents!

Wednesday, September 9, 2009

Nerf Wars. Day 301 09SEP09

Joshua's theme today... Anybody want to come to my room and play nerf wars? Joshua was doing great today. He had no ill effects from the IVIG from yesterday. He was full of energy and you would never know that his ANC was only 120.

We started off the morning by visiting his friend Preston down in the clinic. They played cars while Preston was getting his chemo. After lunch Joshua took in a round of Nerf Wars with Ms Desa again and then we got "Reprimanded" by the hospital security guard because we were shooting nerf darts into the air in the lobby with another patient and his mommy!!!! We think the guard was just jealous because he couldn't play. We pleaded for him to kick us out but that didn't happen! After that we headed back to the room for dinner and Joshua found another new friend and they had more fun playing between their two rooms.

We are only here until Joshua can bring his counts back up. Hopefully they will start to rise tomorrow. Either way we already have a green light for a pass to get out and see the new baby whenever she graces the world with her presence. We can't wait!!!!!

IVIG and the Jonas Brothers... Day 300 08SEP09

Today marks 300 days that we have been fighting cancer. It seems like 3000.

Joshua got his first IVIG transfusion this afternoon without any problems He was pre-medicated to hep avoid anaphylactic reactions and it worked. It was a nail biting experience for the first hour and a half as he was checked every fifteen minutes as they slowly ramped up the transfusion rate. It is not much fun to sit and wait to see if your child will all of a sudden turn bright red or begin having difficulties breathing. But Joshua manage to get through it without any ill effects so far.

While he was getting transfused a special gift arrived for him. A hat signed by all three of the Jonas brothers! It came thanks to an organization called Caps for Kids. Joshua was really excited. Thanks to Caps for Kids and to the Jonas brothers for their kind gift!

No fever today but his counts are still dropping and he probably won't be getting released anytime soon. We remain a family divided.

Monday, September 7, 2009

Labor Day... Day 299 07SEP09

Nobody was really doing much labor today. Joshua was at least fever free today although his counts are still way down. His ANC was 186 and His platelets were 58.He was feeling pretty good and had another impromptu Nerf war with Aimee and Desa. I am not sure if anybody really won.

Barbie, one of Joshua's nurses made this wonderfully cool Phineas and Ferb sign for his door.

We got back some more of Joshua's test results only to discover that on top of every thing else he also has an immunoglobulin deficiency in two of the four antibodies. This means that his defenses against bacterial or viral infections are much reduced. This is apparently relatively common for leukemia kids. Joshua will start getting IGIV transfusions to add back the antibodies he is missing. The infusion takes 6-8 hours and he will need one every three to four weeks. We should have all the details tomorrow. Add this to the list of numbers we can stress out about and track with fervor. Still no idea when Josh might be let out of the hospital, with luck it will be in the next day or two. All depends on his temp and his counts.

Jarrod left this evening to spend a few days with Renee's parents as I have to start back to work tomorrow and all my classes are at night this quarter. The house is awfully quiet without my big buddy around. We at least had a nice dinner together before we bundled him off.

Tomorrow is back to the hospital to be with Joshua and Renee for a while and then off to work.

Sunday, September 6, 2009

Port problems... Day 298 06SEP09

Joshua has been having port problems since last night. His port has been acting like it is blocked when they try and draw blood from him. After trying several things throughout the day it started functioning again correctly this evening. His temperature is still not behaving and he is running fevers as son as the tylenol wears off. The recurring fevers means more blood cultures to check for possible infections. Tomorrow we will spend yet another holiday in the hospital. There have been so many we are losing count. We are still awaiting the results from all the tests that were run late last night.

Joshua is his usual remarkable fashion is back to having fun. He had an all out nerf dart war with Aimee and Deesa this afternoon while we were at the hospital. There were darts everywhere and we were all laughing hysterically. Our family at the hospital is wonderful and they make Joshua's life so much better. We are very lucky to have such great nurses to take care of our Joshua.

Here are some pictures of the start of our weekend.