Sunday, May 31, 2009

4800 hours... Day 200 31MAY09

Today marks two hundred days that we have been a cancer family. It seems like a strange thing to take notice of or celebrate. But as a cancer family these kind of milestones are important to us. It means we have worked together to get here.

The surprising news this morning was that the kids, all of them, spent the entire night in the tent. Joshua came home this morning and I asked him how it was. He replied, "Best nights sleep I have had." Good for him. He and Jarrod both had a great time camping out with their cousins.

We went over later in the morning for breakfast and to take down the Taj ma Tent. Jarrod and I managed to get it down and folded without too much trouble. The rest of the afternoon was devoted to yard work. Even the boys pitched in and helped out for a while.

Joshua continues to do great, his appetite has not even begun to slow down. He is still eating all the time and has actually managed to get a little meat on his bones. His energy levels have been back to normal for the first time in quite a while and we are all enjoying it.

The rest of the week is going to be hectic. Joshua will go back in on Wednesday to see if he qualifies and if he does we will be in the hospital for a couple of days doing another round of chemo.

Saturday, May 30, 2009

The great outdoors... Day 199 30MAY09

Joshua managed to get around quite a bit today. He spent the morning at home. Around noon he went over to visit with Grandma and Grandpa Gandy and my sister Marcia who is visiting along with Aaron from Ohio. We had a nice visit with lunch and even five different flavors of ice cream to choose from. Marcia doesn't get to come down as often as we would like so it was a treat to be able to spend some time with her.

After a little rest at home Joshua and Jarrod headed over to Grandma and Pa Peters for dinner and a camp out. Jarrod and Pa put up the largest tent any of us have ever seen. We have taken it camping several times and affectionately dubbed it "Taj ma Tent". Cousins Taylor and Avery came over to join in the camping party. All the adults were taking bets on how long the kids would actually sleep in the tent. I'll have the results tomorrow so check back. Joshua is much improved over earlier this week. He has a lot more energy and is playing and having a good time. It is great to see him so active and not depressed or lethargic. There have been far too few good days over the last six months. When we get them it is definitely cause to celebrate. As an added benefit Renee and I got to spend the evening quietly alone at home which is a pretty rare thing indeed.

Friday, May 29, 2009

of knights and dragons... Day 198 29MAY09

Joshua finished building this really cool LEGO castle today and he was really keen to show it to every one. All of the pictures are by Joshua himself. I got a tour and very detailed description of the whole castle as soon as I got home this evening. It was quite informative and educational. Once again I am amazed at how well he can build such complicated stuff so quickly. It is definitely something he really enjoys.

Joshua, according to his own report, is feeling better. His energy levels today were higher and he was still going strong when I got home. He was a little anxious about going to bed because he thinks he will wake up later and not be able to go back to sleep. I am hoping that enough of the steroids are out of his system so he will be able to get an uninterrupted nights rest. Tomorrow should show a little more improvement in his energy and his stamina. He needs all the rest he can get, next week is going to be a little hectic.

Thursday, May 28, 2009

This is how we roll... Day 197 28MAY09

Joshua and Jarrod wanted to go bowling, so we went bowling. We took them to the lanes that are not far from home early in the day when the bowling alley was pretty deserted. We walked in and asked the kid behind the counter if we could have a lane as far away from other people as possible. It is amazing that when you have a bald kid with you people don't ask too many questions. The boys had a great time bowling and did very well. Much better than I did. Renee as always beat us all soundly.

After I went off to work Renee and the kids went over to Jim and Sally's for dinner. Jim got a new smoker and he was dying to try it out. I hear the results were quite tasty. Master Jayden came over for the evening so Joshua and Jarrod could practice their Uncle skills. They are both going to make great fathers some day.

Joshua was overly tired this evening as he comes off of the steroids. The lack of sleep is catching up with him pretty quickly. I am hoping that he gets a good nights rest and can begin to feel better tomorrow.

Wednesday, May 27, 2009

Fruits of their labour... Day 196 27MAY09

Crews were hard at work today putting the finishing touches on the new LEGO police command center. After a careful inspection by the project managers it was officially opened for business. If you look closely you will see a coffee maker in the break room as well as a microwave. This thing is amazingly detailed and well equipped. Joshua and Jarrod had a great time putting it together. They amaze me with their respective building skills.

Today was Joshua's last dose of dexamethasone. We all breathed a collective sigh of relief. The steroids have really done a number on our little guy. His batteries ran out just after dinner and when they run out he just shuts down. Unfortunately the steroids also make him wake up every two hours or so all night so he barely gets any rest. They should be out of his system in the next 36 to 72 hours. We will be hoping for an improvement starting late tomorrow. Our next hurdle is to qualify for the next round of chemo this coming Wednesday. Hopefully his counts will stay up and he will not get delayed.

Tuesday, May 26, 2009

Construction re-starts... Day 195 26MAY09

After a delay waiting for materials to arrive from an outside vendor construction has been re-started. Project leaders Joshua and Jarrod gave the green light this evening for crews to start back to work. Investors were pleased at hearing the news and the project leaders assured them that the project would remain on schedule.

Joshua's visit to the clinic today was good. His counts are strong with his ANC over 1000 and his platelets over 400. Not the low counts we were expecting. Of course his counts can be like the stock market, up one day and down the next. For now they are up. After talking with people at the clinic we are pretty sure the lack of energy and insomnia are a result of the steroids he is taking. He will finish this round tomorrow but we are not sure how long they will take to clear out of his system. So far in his rounds of chemo the steroids have been the drug that causes him the most problems. From the rampant hunger on the prednisone and fluid retention to this latest round of side effects. He spent most of the day resting and had a really hard time with his lower back hurting for a while. Tylenol and a round on the heating pad seemed to help quite a bit. After dinner he worked on his LEGO's for a while and then went back to resting and cuddling with Renee.

Today was one of the days when I am just tired of Joshua being sick. It happens time to time. It is all just so unfair for him to be going through all of this. I just want it to end. I know and I remind my self that this is only the beginning, we have many years left to go. Lots of unforeseen obstacles to face. I know that tomorrow things will be back to "normal" and that this feeling will have passed. But for tonight it weighs heavy on my heart.

Monday, May 25, 2009

Sleepy... Day 194 25MAY09

Josh spent most of today sleeping. He woke up at 3:00am and stayed up until 5:30 or so before he went back to sleep. One of the side effects of the steroids is insomnia and we think that is what is happening. He sleeps fitfully and will wake up at the slightest noise. We have decided to take him to the clinic first thing in the morning to get his counts checked, both us think he probably needs a transfusion. But the labs will tell us for sure. He has just not been himself this weekend and both us are a little concerned. With any luck it is just the cumulative effect of the chemo and his counts are okay. If not he can get what he needs to start feeling a little better. It is really hard when he is so totally wiped out.

Sunday, May 24, 2009

Family... Day 193 24MAY09

This afternoon was a time for family. Jamie and Christian, and Bella, came over to spend some time with all of us. Joshua really enjoys when they come over. He played the Wii with Christian, no word on who won. Our granddaughter is coming along nicely and is growing quickly. Joshua spent time cuddling with Jamie and his niece to be and playing on the computer. He rested a lot.

Josh just can't seem to shake the cloud that has been hovering over him since he got chemo last week. He is fine for a little while and then the bottom drops out. Again today he spent the majority of his time laying down and cuddling. He doesn't want to be alone very much. He is still eating okay, I think mostly due to the steroids. His weight is holding steady, no drop from his high mark. But his energy is just not recovering. Renee and I both know his counts are still really low. He is a markedly different child when they are. Our continued hope is for no fevers or reasons to go to the hospital. We have already been at home for over a month and the lead between the current record and the previous one is stretching quickly. But these are the things you worry about when you have a cancer kid.

We go back to the clinic on Wednesday to get a CBC and check counts. In the meantime Joshua will stay on lockdown and continue resting.

Sandwiches... Day 192 23MAY09

Joshua is still hanging in there. He has been tired most of the day and pretty needy. He doesn't want to be alone very much. He spent most of the day cuddling with Renee and napping. His appetite has stayed good this time and he is even making his own food from time to time. It is fun to watch him make a sandwich in the kitchen, perched on top of his little red stool. Very precisely making the perfect sandwich. Only he can make them just right. I know his counts are still way down just by the way he is acting. So far the dreaded fever has not come to visit and we keep extending our stay at home record one day at a time.

Friday, May 22, 2009

A little less rain... Day 191 22MAY09

Today was pretty much like yesterday only with a little less rain. Joshua's temperature has been hovering at 99 so far. He is still really tired and very cranky. The chemo and the steroids have definitely caught up with him. So now we settle in for a long weekend at home. All of us hoping that we get to spend the whole thing here where we belong. Holidays have historically been very bad juju for us. Let's hope this time is different.

Joshua got a visit today from Haley and her mom who brought over a luscious dinner for Renee and the kids. I have got to figure out how to be home when all the food shows up... It is a great help to Renee on the nights that I am gone and she is home alone with the boys and the leftovers are really good when I get home.

Thursday, May 21, 2009

Rain and fog... Day 190 21MAY09

We are approaching the point where Renee and I are talking about starting to build a boat and gather the animals. We have had almost non-stop rain for several days now. It was a good day to stay at home and build LEGO spaceships. Joshua built his latest creation today. He worked on it for hours both before and after school with Ms. Lydia. He seemed to be having trouble today with his school work, the chemo fog is thick today. But he managed to keep a good attitude and push through it. The rest of the day was a little rocky. The chemo fog really frustrates Joshua and it makes him indecisive. He knows he is hungry but he can't decide what to eat. He is bored but he can to decide what to play with. It is if the part of his brain that makes choices is on the fritz. All of this adds up to him being rather cranky.

I am on full germ warfare at school. I sanitized my keyboard, mouse, desk, the carpet, anyone that walks too close to me. It always puts me on high alert when Joshua's counts are really low. I will not get in to the elevator because of germs. The good side is I walk up the stairs and get some exercise. I hold my breath when I hear someone cough or sneeze. I wash my hands constantly. It never ends. Germs are everywhere. I worry that I will be the one to bring something home that Joshua will catch and wind up back in the hospital. Constant vigilance is the only option.

The forecast tomorrow is for more rain. Hopefully for Joshua it will be more rest and clearing conditions in his mind.

Wednesday, May 20, 2009

Star for a day... Day 189 20MAY09

Joshua was a little tired this morning but he got up early to got do the Morning Show at his school. The morning show is on all the televisions in the classrooms and this month they are raising money for Pennies for Patients a project of the Leukemia and Lymphoma Society. The school had asked if Joshua would come and talk about having childhood leukemia. They even did a special presentation for our little angel Rylee. Joshua and Rylee received special presents from the school. He had a great time and got to visit with all of his classmates afterwards. He sat at the front of the class and answered questions about having cancer. It was a lot of fun and Josh was glad for the chance to see all of his friends that he has been missing.

Joshua came home and finished up the really cool LEGO he got yesterday. It amazes me how fast he and Jarrod can build these things. They really do enjoy it.

After a little rest and a quick bite of lunch it was off to the clinic for chemo. On the way there Joshua, Renee, and Jarrod stopped by the Children's Cancer Center to drop off a lovely bag of gifts from the Ladies Auxiliary VFW Post 6287 in Ruskin. Josh gave it to Ms. Nicki who gratefully accepted it. I know they will put it to good use.

Chemo went smoothly however Joshua's ANC has dropped to 235. That is a big slide from over 3500 last week. Just when we thought he was going to stay up on the hill for awhile. His batteries have been dying ever since. He was rather fussy all evening and he really doesn't feel good. We are on high germ alert for now and will be keeping Joshua sequestered for a while. We are hoping against hope that he can weather the drop and not run a fever. We have been home for quite a while this time and we would like to keep it that way. The Doxorubicin has once again wonked out his sense of smell. He had a hard time finding something to eat where the smell didn't bother him. He spent most of the evening cuddled up with Renee, a sure sign that he is feeling his worst. I hope he can get a good nights rest and be stronger in the morning.

A year ago today I found something precious that I had lost 43 years ago. It was something so special that I could never put it out of my mind. When I found it I had all but given up hope of ever recovering it. I had looked in all the logical places. I had scoured the unlikely ones, and also the completely illogical. But it was of no avail. Finally through several twists of fate that I had nothing to do with my lost item was returned to me against all odds. Since that day not a moment has passed that I am not truly thankful for this treasure.

What was this precious object you might ask. What could possibly be so important that you would search for it even after four decades had passed?

It was my birth mother. The woman who gave me that most cherished off all gifts, life.

We were separated right after I was brought into this cold world. Separated by circumstance and an ignorant society.

But we are re-united!

In the years between our two meetings many things has transpired. I was fortunate enough to have the love and care of two people who are still with me today, my parents. I was formed and nurtured both by their love as well as the indelible imprint left in me from my mother.

I have two mothers, and for that I am doubly blessed. For I have known the unwavering love of both.

I remember this day a year ago as I paced nervously on the deck waiting for the phone to ring. Waiting to hear her voice for the second time. Not able to remember the first. Millions of questions whizzing through my mind.

It rang,
we talked,
it was perfect.

Since that day we have only grown closer, now we can talk all the time. We have many steps left to fill in the blanks of the last four decades, but we are walking forward together, never to be separated again.

I love you mom.

Tuesday, May 19, 2009

Rainy day... Day 188 19MAY09

Today was a great day to stay at home. It pretty much has been raining all day, it still is. Goodness knows we need the rain, just not all at once. I took Joshua to physical therapy this morning to work on his feet. He is trying very hard and he loves to do the exercises that involve kicking a ball. We are going to have to keep working on strengthening his tendons. Tomorrow after the clinic he is going to pick up his foot braces. They will hopefully help keep his tendons stretched while he is asleep. But like every thing else he comes up against he has adapted and never complains.

Later in the day after Renee got back from a doctors appointment we all went up to Wal Mart in search of LEGO's. Joshua used some of the money he got yesterday to get a special LEGO set to build. He was so excited in the store. Even our constant germ phobia couldn't slow him down. Have you ever considered how nasty the handle of a shopping cart is? Do they ever actually clean those things? I think not. Amazing how much differently you consider the universe when you are a cancer family.

As soon as we were done with dinner Joshua disappeared into his room to begin construction. He was totally absorbed in what he was doing for the next several hours until it was bedtime. He didn't get it finished, but he made good progress. I am sure he will button it up in the morning.

I am still in awe of our little angel from yesterday. I wish that I could have been home to meet her and tell her how special she is. I have said before that we as a people could learn much by hearkening to the song of a child's heart, and friends, the melody in hers is especially sweet.

Monday, May 18, 2009

Visit from an Angel... Day 187 18MAY09

Everyday something special happens! Some days it is hard to see and other days it is very obvious. Today was one of those "obvious" days for Joshua. The day started rainy, dreary, and wet. I realized that I had a lot of errands to try and accomplish. Typical Monday! In the morning I went on my errands, Lee worked from his home office, Jarrod did some studying and Joshua worked on homework and a new computer game. Nothing new to talk about there. Joshua was having a great day and feeling good. Then around 5 pm we received a visit from a special little "Angel". Her name is Rylee and she is a classmate of Joshua's. I had spoken with her mom earlier in the day and she said Rylee had something for Joshua and wanted to stop by and drop it off. I said sure, he was having a good day. When Rylee, her mom, and two older sisters showed up, I was not prepared for "the gift". Rylee had just celebrated her birthday party and this is the invitation she sent out...It read..

"Dear family and friends, I would like you to come to my birthday party on Sunday, May 17, at 1:00 pm. Please don't bring me any presents. My friend Joshua has cancer please bring a donation and I will give it to him so he can buy himself something special for being so brave. Please bring swim suit and towel.

Love Rylee"

See why she's an Angel! I don't want to say the amount of donations she raised but let's just say that Joshua can buy a lot of Lego's if he wants too! I think if we need more fundraising we are going to hire Rylee to help us out! Children are truly a gift from God and they inspire us everyday. Joshua seems to amaze me everyday with his bravery and strength and today we also had Rylee. She gave up birthday presents to help a friend. That also shows strength, bravery and a whole lot more. If only we could be more like our children every day!

 Rylee and Joshua had a great time playing for a little while, and Joshua even got in some "nerf" shots at Rylee's older sister!  A lot of laughing and playing! It was a very special day!

Sunday, May 17, 2009

A day of fun... Day 186 17MAY09

Joshua got up this morning and headed off for church. This is the first time he has been to church for a regular service in quite a while. When he got home he made sure he got all of his meds before he started playing for the day. It is rather strange, although normal here, for your seven year old to remind you that he needs to take his medicine. But he knows exactly what he needs to take, the correct dose, and when he is supposed to take it.

Jamie and Christian came over a little later and Joshua ran them ragged for most of the day. He played tennis, built k'nex stuff with Jamie and Jarrod, and sang songs while they were working. He got his favorite for dinner, crab legs. I found them on sale at the market and picked some up for Josh. This kid is a shelling machine. He can really tear through some crab legs. It is really fun to watch him go to work on them. His appetite today was just short of continuos, a big change from a few weeks back. After dinner he took a walk on the golf course with Jamie, Christian, and I. We found 25 golf balls tonight! A new family record. Even with the frequent sprinkles today we still managed to get some good time outside. JAmie and Christian stayed until it was time for the kids to go to bed, it was a fun day for all of us.

Saturday, May 16, 2009

4 amigos... Day 185 16MAY09

Joshua had another good day. He was supposed to have a play date this morning but one of the family members woke up not feeling well. He still really wanted to go swimming so Renee called Sally and we got together at her house later in the afternoon. Joshua had a blast swimming and playing in the water with Cameron and Jayden. After cavorting in the water for a while they all chilled out in the hot tub with popsicles. It was a great day for him to be a normal little boy for a while. I am so glad that he is doing so well with the new chemo he is on. His energy levels have been good and he is still eating well. Hopefully this trend will continue for a while.

This evening during the rather violent thunderstorm that swept through Jarrod, Joshua, and I got in a game of Yahtzee while Renee played in the art room. It was a fun way to spend a stormy night. Tomorrow is a new day and the last 24 hour period we need to get through to set a new stay at home record. I feel confident that we will make it without a problem.

Friday, May 15, 2009

Still Growing... Day 184 15MAY09

Today was another day of playing in the dirt. Jarrod and Joshua talked Renee into taking them to Home Depot to get some more plants. The boys spent quite some time developing their respective rock gardens. When they were done they blindfolded Renee and led her out to the front porch to see their creations. They are really nice and are now framing the front steps.

Joshua continues to do okay, he is still having pain in his legs and arms but nothing unmanageable. Tonight he is rather restless and was a little nauseous before bed so he got some more zofran. We are still very close to setting an all time stay at home record this weekend. With any luck we will make it without any problem at all.