Thursday, April 30, 2009

Back to normal... Day 169 30APR09

Today was business as usual at the Gandy ranch. Josh did a little school work, Jarrod did a lot. Joshua has taken to eating about every thirty minutes when he is awake. His acceptable menu has been reduced to four items: turkey slices; american cheese; pretzels; and ranch dressing. It is almost a full time job to keep up with his kitchen requests. We are glad that he is eating but we have got to figure out a way to expand his menu a little. Joshua is doing well otherwise, he took a little nap this afternoon but has had a good energy supply for the rest of the day. Tomorrow is more of the same with a chance of some fun thrown in.

Wednesday, April 29, 2009

Back home... Day 168 29APR09

We got back from the beach this evening after a pleasant drive across our fair state. Lets go back and pick up the highlights from yesterday and today.

We got to Cocoa Beach just after lunch yesterday and it wasn't long before Josh and Jarrod were in the pool. I was really surprised at how well Joshua was in the pool. He has not been swimming in over six months but you would have thought he spent every day on the water. It was neat to watch him really enjoying himself. He was really cute with his mask and snorkel topped off with a red bandanna. He got tired and cold pretty quick but frequent rest breaks helped him keep his strength up. He was swimming and doing flips underwater like there was no tomorrow. Later in the evening we took a walk down to the beach to check out the waves and get a little sand in between our toes. The tide was coming in and we had an onshore breeze, the waves were really stacking up. The water is still a little cool for my tropical blood but not that bad. We made our normal pilgrimage to Ron Jon's to get in touch with the surf vibe then had a great dinner at the little fish restaurant we always eat at. Jarrod got to have his favorite, king crab legs. We were all in bed and asleep just after 9.

This morning we woke up and took the boys to the beach. We figured the waves would be calmer in the morning. Not so. Josh was having difficulty just standing knee deep in the surf line so we switched over to putt putt golf. Joshua and Jarrod had been asking to go ever since we drove in past the golf place. It was a fun 18 holes and the boys were putting pretty well. Josh started to get tired about the tenth hole but we found a shady spot to rest for a bit and he was okay to finish the course. No hole in ones this time but we did have a funny incident when Jarrod's ball got stuck under a bridge. Renee and I were having a great time watching the boys try and get his ball out.

After lunch we headed back to the pool for a while and got some more swimming in. All of us were pretty tired by afternoon so we took a nice siesta. Joshua wanted to eat crab legs so off we went back to the Fish House. A great meal later we were on the road headed back for home. It was a really fun break from all of the normal craziness that defines us at home. It was wonderful to see Joshua swimming and truly having a great time. I wish that he had more energy, he loves being in the water. A big thanks to Dr. Jim and Sally for the use of their condo, it was a nice break.

Tomorrow we go back to our normal routine. Jarrod has school as does Joshua; I have to get back to work. Joshua will not get anymore chemo until May 6 when he starts delayed intensification. In the meantime we are going to try and get him rested up and add a few pounds to his lean little frame.

Tuesday, April 28, 2009

Life is sunny... Day 167 28APR09

I am writing the blog tonight from my phone. I was unable to find a hotspot close by so I will be brief. Josh is doing great and had a fun day and the weather was really nice all day. I promise I will have all the details and pictures when we get back home. We had a great dinner at the Fish Shack and everyone is getting ready to get a good nights sleep. More to come when I can use more than my thumbs to type.

Surfs up... Day 166 27APR09

Josh got the green light today for a trip to the beach. He got up and started his day with Ms. Lydia and school. As soon as he was done it was off to clinic for labs. His ANC came back at 850 and his platelets are okay so we are going to go ahead with our trip to Cocoa Beach. Both of the boys have been looking forward to going and have already laid out enough stuff to fill the trunk with inflatable rings and boogie boards. Not to mention more dive gear than Jacques Costeau usually packed. It will be fun to get them away from their life here for day or two. This will only be the second time since Joshua was diagnosed that we have been able to take him anywhere away from home. The last trip was to River Ranch and that was a great healing experience for all of us. A day at the beach and hanging around the pool will, I am sure, have a wonderful therapeutic effect on us as well. We are lucky to have friends like Dr. Jim and Sally who will let us use their beach getaway. I will be watching Joshua like a hawk in the water but I know he will have a great time. He loves the beach. I am not sure what kind of internet connection I am going to be able to dig up but I will endeavor to tap in somewhere to update the blog.

Joshua was putting beads on his bravery bead chain today. The chain is already almost 12 feet long! It will grow several more feet when he gets the rest of the beads he collected at the clinic today on there. He is not even close to being caught up for the last month or so. It is humbling to remember that every bead represents something that has happened to him. A blood draw, or chemo, or a stay at the hospital... I am sure that the beads will wrap around the house before he is done with all of this.

Sunday, April 26, 2009

He made it... Day 165 26APR09


Shortly after Joshua was diagnosed, Father John, our Pastor at St Anne Parrish, came to me and wanted Joshua to make his First Communion and Confirmation at Easter Vigil Mass. We asked Joshua and he said definitely, Yes. He was very eager to receive First Communion, but I  had my doubts about having him sit through a 3 hour mass at night, so I asked if we could do the ceremony at the morning mass on the following Sunday. That was the plan but.....Joshua's fever had a different plan. When we got out of the hospital this week, I immediately set it up for this Sunday. After a very stressful Saturday evening, we finally did it. Joshua had a very special morning. Not only did he get to make his First Communion and Confirmation but Jarrod also received his Confirmation by his side. Jarrod was originally scheduled to make Confirmation with his class at the end of May but he said he wanted to stand by his brother and do it at the same time.  Lee and I were very proud of Jarrod today standing with his little brother. We were also very proud of Joshua for "hanging in there" when he was obviously tired from a "heated" Saturday. Lee and I would like to give a special thank you to Father John and the parishioners of St Anne for helping us celebrate our sons special day.  We would also like to thank our friends and family that came and those that could not make it but really wanted to be there. We are very blessed to have our  families close to us helping us through everything!

It was an early morning for all of us but well worth it. Joshua was very handsome in his confirmation outfit. Jarrod was not only handsome but looking mighty grown up standing next to Josh. Afterwards we all gathered over at Grandma and Pa peters house for brunch with family and friends. Josh got a chance to hang out with the gang and have a little fun. He was pretty tired early in the afternoon so he went back to our house with Jamie and Christian to rest. After everyone left this afternoon he managed to get in a good nap and had a good amount of energy this evening. Tomorrow we go back to the clinic for labs to check and see where Joshua's counts are. We are hoping that they are high enough for us to escape on Tuesday and Wednesday and go over to Cocoa beach. Joshua really misses going to the beach and being in the water, it was always one of his favorite things to do. We will keep our fingers crossed. We could all use a little R&R time.

Saturday, April 25, 2009

Wait an hour... Day 164 25APR09

Today was pretty much like any other Saturday. We got up and did our normal morning things. Renee went shopping in Brandon. Jamie and Christian came over to spend the day.ThenJoshua's cheeks got really rosy and his head felt warm. Out came the thermometer, 100.2.

Renee started getting all the suitcases sorted out and finished up her laundry.

An hour later another reading, 100.4. A steady climb; we have seen this before so Renee started packing.

Another hour and another reading, this time it was 101.The dreaded make the call number had arrived, so we did. Renee talked to Dr. Rossbach, it is probably the methotrexate causing the fever she suggested. He agreed. But neither of us is willing to just call it a done deal and let it go at that. Wait and hour he said and call me back.

Another hour, another reading. Still 101. We called back. Let's wait one more hour before you bring him to the hospital since he is not feeling bad and is eating.

Another nail biting hour and then 100.2.

Another hour and 99.8. Have the troops stand down.

As I write this Josh is sleeping peacefully and is still at 99.8, we just checked him a few minutes ago. This time we get to stay home and sleep in our own beds. Tomorrow? If he sticks to past habits his fever will come back and be up to 101 by tomorrow afternoon.

Will it drop back down if we wait an hour?

We can hope...

Friday, April 24, 2009

Zach Tucker Golf Scramble... Day 163 24APR09

I thought I would give my wonderful and very talented husband a break and try my hand at writing about Joshua's day. 

On Friday's, our "normal" is to have Lee leave for work at around 7:15 am and call me sometime between 10-11 pm and let me know he's on his way home. This has been our "normal" Friday for about the last 4 years or so. This morning was no different except Joshua woke up with Lee and we were wide awake from there. Ms Lydia came for school and as soon as she walked out the door, we were right behind her. We had someplace fun to go and we didn't want to be late.

 Joshua was invited to the 4th Annual Zach Tucker Golf Tournament sponsored by the Giving Hope through Faith Foundation, When Joshua was first diagnosed we were told about this wonderful foundation that could help us. They openly took us in and have been sending little gifts to Joshua and our family since the beginning. 

Sherry and Dirk Tucker started the foundation for their son Zach who lost his fight with cancer. Joshua, Jarrod, and I were lucky to meet these wonderful people. Joshua and Jarrod had a fantastic time putting on the green and trying to hit the Pepsi Cans. Joshua even had his friend Mandy there to hang out with. We know Mandy and her family from the Children's Cancer Center. Mandy was also one of their "special guests".  We were treated to lunch and then after the golfers started, we called it quits. Joshua was worn out, but it was a "good" tired. He came home to take a nap while Jarrod and I finished up with school work. It was nice to have one of my "normal" Friday's with the boys. These are the special days I treasure always. The only thing missing was Lee.

As I sat watching my two boys run around on a putting green, I kept thinking to myself that you would never know that Joshua had just had a chemo treatment yesterday. If it wasn't for the weak ankles and beautiful bald head, he was just another kid out there "talking it up" with everyone and laughing. Many thanks and heartfelt gratitude goes out to Sherry and Dirk for their wonderful foundation and for giving us a very special day for my son to be himself once again.

Thursday, April 23, 2009

Bearclaws and Bacon... Day 162 23APR09

Joshua went to the clinic this morning and qualified without a hitch with an ANC of 1004. Joshua is back on the plan.

While he was waiting for his chemo he got hungry so Renee and him walked over to the cafeteria at the hospital. What glorious and nutritious meal did Joshua pick out to slake his hunger? A bearclaw and a handful of bacon, that's what he choose. Good thing his cholesterol is ok. But hey, when you are a kid with cancer things are just a little more flexible. I am just glad he is eating and not having any problems right now. A least it wasn't bacon dipped in chocolate.

After a little wait he got his last round of chemo for this phase of treatment. He is doing okay so far; he got hydrocortisone before the chemo which may help keep him from getting a fever in response to the methotrexate. As he went to bed tonight he was cool and feeling pretty good. The real test will be what his temperature is in the morning when he wakes up. In the past his fever has started the next day and slowly ramped up throughout the day. We are really hoping that the new meds will keep this from happening.

He is done with interim maintenance and we will start delayed intensification, providing he qualifies, on May 6, Renee's birthday. Not the best present...

Wednesday, April 22, 2009

The fog... Day 161 22APR09

Every week Joshua, as part of his schoolwork, gets a question that he is supposed to write an answer to. I was leafing through the pages he has completed in the past few months this afternoon and this is what I found. These are in his own words.

I wish I could build a:

"Skyscraper out of legos. I will use red, green, and blue. I will make it 20 feet tall."

When I get money:

"I will put it in my wallet. I am going to buy a house a car and food."

I have trouble learning how to:

"Read. My brain is not working. It is very frustrating."

The last one was from this morning.

There is a phenomenon knows as "chemo fog or chemo brain" which affects the brain's cognitive ability to work properly . We have watched him have difficulty doing simple things or remembering if it is his turn in a game. We hope and pray that it is only temporary and that once the chemo is done the fog will dissipate on a fresh breeze. Only a long wait will give us that answer. It is hard to watch him struggle with his mind and his memory. It ebbs and flows and some days are worse than others. Yet it persists. Another frightening reminder that we are not even close to being out of the woods yet.

Today was a good day in most other respects. Josh had school this morning with Ms. Lydia. It was the first time they have been able to get any work done in quite a while. I am confident that he will catch up over time. He tries really hard and I think that it frustrates him more than we will ever know when it is difficult for him.

He took a long nap this afternoon and woke up a little groggy. We had dinner and then headed off for a short walk on the golf course so he could get a little exercise. We didn't get very far before Joshua got tired and was complaining that his hip and legs hurt. We took a breather and sat in the soft grass on one of the greens. It was a really pretty evening with a nice breeze and the gentle warmth of a setting sun wrapped around our shoulders. I cherish those little moments we have like that. Just the two of us sitting close, Josh leaning back against me in the "daddy chair", staring out at the world. We sat quietly for several minutes. I kissed the top of his smooth, warm head. The world was at peace for a few brief minutes before we had to break the spell, get up, and start walking for home.

Tomorrow Josh heads back to the clinic for a CBC to see if his counts have stayed up. If they have he will get the last round of chemo for this treatment phase. Then it's eleven days off before we start delayed intensification. If he qualifies he will get IV Methotrexate and Vincristine. Then we wait and hope that his furnace stays under control. So far he has not had any more trouble with his digestive track. He has been eating okay and has not been nauseous or complained of any stomach pains. It looks very probable that the mystery of his stomach problems will remain just that.

3..2..1..liftoff.... Day 160 21APR09

Houston we are go for launch... roger... counting down...3...2...1... Go for main engine start... Ignition... We have liftoff.

Joshua's ANC this morning had rocketed to 1628! The GCFS really worked quick this time around. Since he has been feeling a little better and has stayed fever free they sent him on his way. After sojourning in the hospital for the last eleven days he is finally home.

I managed to sneak a bunch of fun pictures throughout the afternoon just to share with you. Joshua and I have a great game going where he tries to get his hand up before I can snap a picture. I have had to become very crafty and rather sneaky to get any good pictures. We have a lot of laughs when he beats me 9 out of 10 times. Man he is quick for such a small little guy.

I made a special dinner for Renee and Josh. I figure if I spoil them with gourmet cooking they won't want to go back to the hospital anytime soon. I 'll let you know how it works out. We took a nice walk this evening as a family for the first time in a while. It was a beautiful evening to be out and the fresh air is great for healing little boy's spirits.

So while I write this, Joshua is not sleeping in a little hospital room halfway across the county. He is not being awoken every two hours to check his vitals and administer his meds. No, tonight my friends, he is peacefully sleeping not twenty feet from where I stand. Home and safe at last. Let's hope he stays for a while.

Tuesday, April 21, 2009

No good news, no bad news.... Day 159 20APR09

Joshua's procedure went fine this morning. They got a bunch of pictures of his esophagus, duodenum, stomach, etc... (I however got no pictures of the elusive Joshua.)

The results: nothing notable. There was no sign of any problems. The doctor took two biopsies just to make sure, the results will be back in a couple of days. So we are no closer to solving the mystery.

Joshua had a pretty good day, they left him unhooked after his trip to surgery this morning until 5:00 this evening. He got a chance to walk around and get a little exercise. His counts have dropped again, his ANC was 287. Dr. Rossbach is giving him GCFS again to stimulate his blood cell production. Last time he got the same thing it shot his ANC over 4000. It takes a couple of days to really kick in so he and Renee are still stuck for a while longer. I am pretty sure he will make it home before the weekend hits. As soon as his ANC gets over 500 he can get his next round of chemo and we can get him back on schedule.

This has been another long and unexpected hospital stay. It will take Josh and Renee a week at home to recover from being stuck in the same tiny room all this time. I left Jarrod at the hospital this evening while I went to teach and he got to spend some extra time with his brother and Renee. I think they were going to watch "The Goonies" this evening, wish I could have stayed. It's one of my favorites.

Sunday, April 19, 2009

Another hurdle to jump.... Day 158 19APR09

The meds didn't work. Joshua woke up in the middle of the night with stomach pains and nausea. The GI Doctor came in and we are going to go ahead with the scope tomorrow morning. This is not what we really wanted but it is the next step in this long and torturous journey towards finding an answer. The procedure may turn up something that will explain all of Joshua's stomach woes and lead to a way to manage it. Josh has already lost 3.5 pounds since he went into the hospital this time.

He was also scheduled to get his last round of chemo in Interim Maintenance tomorrow. His ANC has dropped to 387 today and he couldn't qualify right now, but he may bounce back tomorrow and get his chemo in the afternoon. We are not really sure. My hope is that after the procedure he will go back to the TCE and get his chemo and then the results will be back and maybe he can come home.

I got to see Jarrod today for the first time since Thursday. He spent the last few days at Renee's parents. While he was there he baked two cakes, a loaf of banana bread, and cookies shaped like flowers for Joshua. They all looked really tasty. He really enjoys baking. All of this change is really tough on Jarrod and it was nice that he got a little break from the chaos for a few days.

After lunch today we went up to the hospital to see Josh. Jamie and Christian came by and Renee and I took a long walk around the outside of the hospital property. It was nice to get her outside for a little bit. I know she is sick and tired of being stuck in that tiny little room. The walls really start to close in after a while. Joshua was in pretty god spirits today. He was a little tired but had plenty of energy to play with Jamie and Christian.

When we got home Jarrod and I managed to whip up some really good sushi for dinner and get in a nice walk together. In the morning he heads back to school on the computer and our "normal" life together.

Tomorrow is a scary day. Josh will be put to sleep yet again. Hopefully it will yield some answers and a way to resolve the problems he has been having. Renee and I both are so tired of not knowing what is wrong and not being able to help Joshua feel better.

So one more time we will wait for him to come back to us from the world of dreams.

Pictures... Day 157 18APR09

I managed to get a lot of pictures of the elusive Joshua toady so I thought I would share. Create a sort of photo essay.

Christian and Jamie came to visit while I was at the hospital this evening. Joshua was unhooked from his IV for a little while so he got to wander around the floor and play with Christian.

Joshua built the potato head people and explained to Jamie and Christian that they were models of him, Christian, Jamie, and their baby.

Joshua had four arms because they ran out of ears...

Jamie is getting bigger every day. The baby is starting to move around and she is so excited. So are we!

Joshua is already a crazy driver. We are going to be in trouble when he starts to drive for real.

Joshua even got a chance to go outside on a walk with Mom and Dad. It was a beautiful afternoon to be outside for a bit.

Now for the other stuff. Joshua was seen by the GI specialist this morning and he has prescribed some new meds to see if they can get his stomach under control. If the meds work we can modify his diet and he should do okay. If they don't work they are going to scope Joshua's esophagus and stomach on Monday. Heres hoping that they will work. So Josh and Renee are stuck in the hospital until at least Monday. We miss them terribly, the house is not the same without them around.

Friday, April 17, 2009

Sliding.... Day 156 15APR09

Today felt like we were sliding downhill. Joshua's ANC is down to 582 and his stomach was bothering him all day. Renee and I are both getting concerned about the stomach pains. It has been bothering him since the beginning of March. Enough already. He is barely eating again and every time he does he stomach hurts. So far we don't know why or how to really make it any better. I was really hoping to get Joshua home tomorrow but I think that it is a slim chance at best. His temp only got up to 100.6 today but his counts are dropping. If he slips below 500 they will keep him until he can claw his way back up. They tried Malox today to help his stomach but its just made him throw up. I know Josh is getting frustrated and he wants to feel better. We want to know how to get him there. Renee is going to talk to Dr. Tebbi in the morning about getting Josh a CT scan of his abdomen and consulting with a GI specialist. Maybe then we will have a clearer picture of what is going on.