Tuesday, June 30, 2009

The races continue... Day 229 29JUN09

Joshua is doing okay today. His counts have fallen again but he is feeling fine. The staph infection seems to be responding to the vancomycin right now but they had to up his doses today from every 12 hours to every 8. Dr. Wynn informed us that he will have to stay in the hospital for 10-14 days and that he will probably not be able to make it to camp next week but there is still a chance. We will see how he progresses over the next few days.

The plasmacar racing continued at the hospital today with Jarrod racing against Dr. Wynn. It was a really close finish. Luckily Renee was able to capture the racing excitement for all of us.

It is really cool that all the staff at the Children's Hospital let the long term kids have fun and the rules are really flexible. When you spend as much time there as they do it really helps. The hospital feels like our second home. I always wanted a little place on the beach but I guess for now this is a better choice.

At least Josh is keeping a good attitude so far. He was playing LEGO star wars when I went to see him tonight after my long day at school. He was smiling and having a good time. His spirit is a testament to the unquenchable hope that lives in a child's heart.

Sunday, June 28, 2009

Racing and girls... Day 228 28JUN09

Joshua's second blood culture came back positive as well. He has a coagulase negative staph infection. This means a mandatory 7-10 day hospital stay and lots of antibiotics to kill off the infection. While this is a serious infection Renee and I are both confident that Joshua will beat it into submission. We have no idea where he picked up the staph, it could have been anywhere.

He has been feeling fine since he started on the vancomycin and was having a great time today racing around the halls, pole surfing, and playing on the wii that Jarrod brought in and set up for him. He even got the nurses involved in his need for speed. His energy was good today and he has been eating grilled cheese sandwiches for breakfast, lunch, and dinner. He got another platelet transfusion this morning and like always he was energized for the rest of the day.

After dinner tonight Joshua and his next door neighbor and friend Demitri went to see a musical show that was going on at the hospital. The production group was teenagers from Salt Lake City, Utah called Clayton Productions. They did singing and dancing from Disney, broadway, and the fifties. Joshua enjoyed the show and he was very popular afterwards. Reminds me of my high school days... I wish... Notice Joshua's "ride" parked under his chair.

I think they were wanting his autograph not the other way around!

Hopefully in a few days they will start giving Josh and Renee day passes to come home for a little while and escape the mundaneness of being stuck in the hospital constantly. At least he can rest here and get caught up on his school work and such. We both miss them already.

Jarrod and I came home and had a rather late but delicious dinner of sushi and nann with a yogurt dip. He is becoming much more of a culinary adventurer as he grows up, and with me around he will never be short of new things to tempt his palette with.

So here we are at another big bump in the road. Renee and Joshua living at our hospital home, Jarrod and I living at our other home.

It sucks.

We will manage, but it still sucks.

Saturday, June 27, 2009

Bump in the road... Day 227 27JUN09

We had a set back today. Joshua's blood culture came back positive for a bacterial infection. His counts also came back very low. His ANC is under 100 and his platelets were 48. His HGB and reds were low as well so he got another transfusion this morning.

They did another culture to rule out a false positive and started him on vancomycin which is a very strong antibiotic. One of the most common side effects is the child's skin turning bright red, it is called red man's reaction. Of course Joshua had the reaction. His head turned scarlet and his lips looked like he was wearing lipstick. They gave him hydrocortisone to counteract the reaction and it seemed to work. From now on he will get hydrocortisone before he gets the vancomycin dose. He is also getting cephapime according to the fever protocol.

If the second culture comes back positive it is a mandatory 5-7 day stay in the hospital so we are bracing for another long stay. He may have caught what Jarrod and Renee had last week; it is hard to tell. He seemed to be feeling okay this evening, the fever is not all that high. He will get another vancomycin dose at 3 a.m. so he will get visited a bunch of times overnight by the nurses. Renee thinks he will need platelets in the morning, he was bruising very easily tonight. I would not be surprised is she is right. We have lost count of the number of transfusions Joshua has gotten so far.

We have everything crossed that the antibiotics will kick in and quickly crush the bacterial infection. With, for all intensive purposes, no immune system an infection can be very hard to beat. Joshua is strong though and always a fighter.

Jarrod and I have switched into "just the two of us" mode and had a nice dinner we prepared and then took a walk together this evening. Tomorrow we will be back up at the hospital hanging out with Josh. Hopefully this is just another of those bumps in the road that we have dealt with before.

Too soon... Day 226 26JUN09

Joshua wen to the clinic this morning to get his counts checked. When he showed up he had a fever of 100.4, they almost didn't let him leave. His counts are still low, ANC at 352 and his platelets at 48. He actually managed to get out of the clinic and make it home.

For a little while.

We are back in the hospital. Joshua's fever ramped up right after he got settled at home and it was time to make the call and relocate to our vacation home at the hospital. He has only been home for a little over 3 days. Life can be so unfair sometimes.

I went to hang out with him after I got done teaching. He was very restless and just couldn't seem to get comfortable. I lay in bed with him for a while and rubbed his back. He was very unhappy about having to go back to the hospital. Josh finally managed to fall asleep and was resting okay when I left. He is stuck until at least Sunday, but I do not really expect him to get home before Monday. The fever, like always it seems, is probably due to the chemo. He got a chest x-ray earlier just to make sure it wasn't something that developed since he left the hospital on Monday. It was clear.

So now we are again a family divided. Renee and Josh at the hospital. Jarrod at Renee's parents. Me at home with the cat. Boom like that things change...

Thursday, June 25, 2009

In-between... Day 225 25JUN09

Today was one of those in-between days. Josh was kind of run down today no doubt a result of the chemo. He had a little difficulty in school today because the fog has crept back in for a little stay. Even with chemo brain he still tries very hard even when he is struggling just to get his brain to work right. Hopefully the fog will start to lift in the next couple of days and he will get back to normal.

This afternoon Joshua was looking out the back door and up on the railing was a squirrel. The squirrel stopped what he was doing and stared right at Josh. They stayed like that for several moments before the squirrel skittered off. It was really cute.

Tonight we went to the Children's Cancer Center for the family dinner night. It was good to see some of our cancer friends that we haven't seen lately and to hear how their children are doing. Like every visit not all of the stories are happy and it extracts a rather large psychic toll on us. It is hard to listen to another parent talk about their child dying or being in severe pain, receiving what seems to be endless chemo treatments. But there is great strength in numbers and we need to be there for each other. As parents of cancer kids only we can truly understand the raging current of emotions that courses through us all. It is tough, but I think it is helpful. A child is the most precious treasure we are every granted the opportunity to cherish and take care of. The demons and the doubts get a little foothold for a while but eventually they are banished back to the shadows on the edges.

In the morning Joshua is off to the clinic again to get a finger stick to check his counts. Hopefully the platelets he got stuck and has not dropped again. Renee and I are both expecting his ANC to be really low, he is acting like it is getting low. If it is he will be trapped inside for the weekend, he really wants to go swimming. It is hard on him to not be able t go out and do the things he wants. He has been asking me for a couple of days to take him for a walk on the golf course but we can't until his counts come up. With any luck he will be back in the safe zone early next week and we can make up for some of the lost time.

Wednesday, June 24, 2009

The end of PEG!... Day 224 24JUN09

Today marks an end to the PEG shots! Once and for all!

No more will Joshua have to suffer through being jabbed in both legs at the same time.

No longer will we have to wait and watch the clock for two hours all the while praying that he will not be one of the ones who has a scary reaction. Scary really meaning that which requires swift, decisive, and immediate medical attention to avoid fatality.

No more will we have to endure the anxiety Joshua always had the night before. Unable to go to sleep because he was dreading what was to come as soon as he woke up.

We are free from the specter of PEG! Now it can just fade into the memories of things passed. Goal achieved. Suffering endured.

To celebrate this momentous and certainly auspicious occasion we had a PEG party. No not a KEG party a PEG party.

Renee created a wonderful cake for Joshua to celebrate with. We had ice cream and cake and were even treated to an end to PEG song that Renee made up for the occasion. Renee's parents stopped by to help us celebrate. The cake was wonderful! Joshua had a fine time.

Before he got his chemo this morning Joshua had to get a platelets transfusion, they had dropped to 19 (normal at the low end is 150). We pretty much figured that he would need them. The deal clincher for me was when he said goodbye to me this morning and his hands were as cold as ice. His ANC is still very low at 320 so he will be trapped in the house for a while and we will bring war to all germs. He will go back on Friday to get another CBC to see how his counts are doing. Hopefully they will have started to recover a little bit by then. In the meantime his spirits are good and he still has that beautiful smile on his face.

Tuesday, June 23, 2009

Taking it easy... Day 223 23JUN09

Joshua was taking it real easy today. Mostly because Renee and I are super paranoid about his platelets being so low. Keeping things clean and fighting off potential infections is one thing, uncontrolled bleeding is an entirely different matter. But even with us constantly watching over him all day he still managed to have a good day.

The boys were very excited this morning to show me the fruits of their labor yesterday. Behold the Crystal Harvester super alien capturing space thingy mabob. I am sure they could write a small novel about how it all works and the accessories and what not. They explained it to me in great detail. I should have taken notes...

Joshua was a little anxious tonight as he was going to bed because of the chemo tomorrow. In the morning it is off to the clinic for more vincristine and PEG shots. The nasty ones in both legs at the same time. Josh really hates those. I don't blame him, it hurts just to watch him get them. We will also see how his counts are tomorrow, he made need platelets if they have continued to drop. I know he will do fine, he is such a strong little guy. It is still very humbling to watch him deal with all the bad thing that happen to him on such a regular basis yet he always keeps a smile in reserve. He is our little warrior day in and day out.

Back where he belongs... Day 222 22JUN09

Joshua got sprung from his hospital prison first thing this morning. His fever has gone away and there was no reason to keep him any longer. He made it home by 10 this morning and I was really glad to see him before I had to leave for work. Renee and Jarrod are both feeling much better, whatever hit them was quick and went away fast. A day of rest and they should be back to 100 percent.

Jarrod and Joshua spent the day relaxing and re-bulding two of their LEGO vehicles into one giant vehicle. The instructions off the internet were 98 pages long but that barely even slowed them down. According to Renee they were finished in no time. Those two together are an un-stoppable building team. The rest of the day was just time to relax and get rested up.

We are back on major germ and injury alert, Joshua's ANC is down to 352 and his platelets have dropped to 52. This puts him at risk for infection or bleeding. If his platelet trend continues he will probably need a transfusion on Wednesday before he gets his chemo and the dreaded PEG shots. We will see what his CBC comes back with.

It is great to have everyone back at home and the wagons parked together again. Lets hope that this is the last time he needs to go into the hospital for a while. These major upheavals in our lives are getting kind of old. Besides he rests soo much better at home.

Sunday, June 21, 2009

Father's Day 2009... Day 221 21JUN09

My day started off with Hobie begging to be fed. Jarrod spent the night over at Renee's parents so I was all alone. After my normal breakfast I got a call from Jarrod wishing me a Happy Fathers Day and letting me now that he was sick and throwing up. Yikes. Not long after I got a call from Renee to let me know she was also sick and throwing up. Yikes again. Seems they both picked up some kind of stomach thing that has breezed past me and Joshua. I attribute his immunity so far to the antibiotics he has been getting and mine to a diet of yogurt and pickled octopus. Actually I just finished a round of antibiotics for the cold I had last week so that might have helped a little. I left after lunch to go check on Jarrod and head up to the hospital to take care of Joshua so Renee could get some rest.

Jamie and Christian came up for a while and spent some time playing with Josh. Jamie is doing great and looks wonderful. Her belly just keeps getting bigger and bigger.

After they left Joshua and I found different ways to fight the boredom of being stuck in the hospital. What follows is a small sample of our activities:

1. Play lots of board games. (Actually it is get your butt kicked over and over by a seven year old no matter what game you play.)

2. Take a walk around the hospital floor.

3. Play a pick up soccer game in the hallway dodging parents and nurses to score. After a while get the nurses to join in.

4. Chase nurses with syringes of saline and have water fights before shift change. Just to be clear, Joshua was the one "chasing" the nurses. I was just an observer.

5. Eat a little ham and drink some more water.

6. Cuddle on the bed and watch TV.

Joshua as you can tell is feeling much better. He was unhooked from his IV today until 9 p.m. when he got another dose of antibiotic. His temperature was staying around 100.2 which is low enough to get him sprung tomorrow. He just can't top 100.5 tonight. So with any luck he will get released after morning rounds and finally get to come home to rest. Renee was still feeling pretty out of sorts and Jarrod seemed to be holding his own tonight. Let's hope that by morning they both feel much better.

For me its another night at home with the cat...

Saturday, June 20, 2009

Still running hot... Day 220 20JUN09

Joshua is stuck in the hospital for yet another day. His fever will go away as soon as he gets tylenol but comes back as it wears off. He seems to feel fine, we had a good time playing this afternoon. Dr. Obzut came in and we all kind of agree that the fever is the result of the chemo. Renee is pretty sure that they forgot to give him hydrocortisone before his LP on wednesday. It has worked in the past to prevent him from getting the initial fever. It seems that once he gets a fever the continuing chemo just keeps throwing wood on the fire. Luckily his last dose of cytarabine was this afternoon so maybe his fever will subside and go away tomorrow. As it stands we get to spend yet another holiday in a rainbow colored hospital room. To me it really doesn't matter as long as we are together.

Josh was watching High School Musical 2 tonight when I called to check on him. He loves to sing along and he can't help but dance from time to time. It is really fun to watch him. His temperature is still around 101 tonight so he is not coming home tomorrow. Maybe on Monday.

Friday, June 19, 2009

A quart low and running hot... Day 219 19JUN09

Joshua is still stuck in the hospital. His fever finally broke around 3 in the morning but came back later in the day. He was really low on his hemoglobin so he got a blood transfusion this afternoon. His cheeks get so rosy right after he gets red blood and his energy perks up. He was in good spirits when Jarrod and I were with him this afternoon. He even ate a cinnamon roll. Unfortunately it didn't last. His fever was back up to 102 late this evening.

So far all the cultures have come back negative which puts us in familiar and frustrating territory. The unexplained/possibly explained fever has returned to haunt us yet again. It is probably a reaction to his chemo meds, probably. But we need to be sure so we stay. Right now I am just hoping to get him home this weekend.

It was like a family reunion last night and today at the hospital. We were walking around talking to all the parents, nurses, and hospital staff that we haven't seen in a few months. They are our extended family and we missed them. Next time we are just going to stop in and visit when we are at the clinic. We really don't need an overnight or prolonged stay. Still it is good to visit for a little bit.

So tonight we are still a separated family as the day fades from being and the night embraces us. But even separated we are always together.

Just when... Day 218 18JUN09

Just when we thought he was doing okay. Just when he was having a good day resting and conquering the world of LEGO Star Wars. Just when we thought it might not happen again. Just when... It did.

Joshua was fine through out today. He was a little tired and took a nap this afternoon but otherwise fine. He had good energy levels and was playing up until it was time to get ready for bed. Then he decided to start running a fever all of a sudden.

Out came the thermometer as we all crossed our fingers and promised to be good.


We made the call.

A scant twenty five minutes later he was on the way to the hospital. That is how fast we can re-configure our lives, that is how cancer gypsies handle things. So we are nomadic once again, separated. Renee and Joshua in the hospital, me and Jarrod at home.

We had been lulled into a false sense of security lately. He has been home for so long, not running anything that we would even consider a fever. Now we have a mandatory 48 hour hospital stay. The nurses took all kinds of cultures to see if anything shows up, we won't know anything until tomorrow at the earliest. His fever had risen to 102.2 by the time he got settled into the hospital. He got tylenol and was cooling down when I left him. Hopefully the fever is related to the chemo and not something he picked up out in the world. We shall see...

Wednesday, June 17, 2009

Hands on... Day 217 17JUN09

First off Joshua did real well at the hospital. His LP went fine and he didn't have any problems getting accessed or receiving his chemo. His counts are down a little but still okay for the most part. To be expected from all the chemo. He is still accessed and we will do our chemo thing at home for the next three days until Saturday when we can pull the plug.

While Joshua was at the hospital he got to take part in a special ceremony sponsored by Hyundai Hope on Wheels. Hyundai sponsors research into pediatric cancers that is already bearing fruit. This year, the Hope on Wheels Tour will travel to children’s hospitals across the country and donate $1.3 million to support further training and study for doctors involved in pediatric cancer research. Hope on Wheels has designated these medical professionals as Hope on Wheels Scholars. Our own Dr. Wynn is one of the researchers and he has been developing a protein that attacks specific brain cancer cells while leaving normal cells alone. Since its inception in 2004, Hyundai Hope on Wheels has donated more than $12 million to institutions nationwide to help kids fight cancer. As part of the ceremony Joshua got to put his very own handprint on the car that they brought to the hospital. He was the first one to get the opportunity to add their mark. There were lots of people around and he was going to be in the newspaper. He was really excited.

Joshua spent most of the afternoon running through castles, flying in spaceships, and wielding the only true Jedi weapon. A lightsaber.

Renee stopped on the way home from the hospital to let Josh pick out a wii game to rent and he chose LEGO Star Wars Adventure. He was doing quite well at solving all the puzzles and wiping out the never ending droid army. His energy was pretty good despite the chemo. He had a little trouble trying to find something to eat that both his brain and his stomach would agree on, but that is normal for the meds. Tomorrow he has already announced that he is going to rest and take it easy. Good for him.

Tuesday, June 16, 2009

A day of play before... Day 216 16JUN09

Tomorrow Joshua is back to the hospital for an LP and more chemo. He will come home with his port accessed until Saturday which means he can't get wet or go swimming. So today he put in another day of fun to get ready to take off the next four.

He went to VBS this morning and had a lot of fun. Jarrod is on the VBS staff for the first time this year and he was making sure that Joshua was well taken care of.

After he got home and even though he has been running a low grade fever he had a play date with Cameron and Jayden. I took Jarrod to go bowling so it was just the little guys this time. Joshua really appreciated the fact that he was going to a play date without us or his older brother. It was a chance for him to be a little independent and enjoy himself. Renee and I can't think of a safer place than over at Jim and Sally's for Joshua to be.

He was pretty tired by the time he got home but his fever had left him. After a good dinner that Jarrod helped prepare he crashed on the sofa. His head was as cool as ever when I checked on him a little while ago.

To answer Robert's question: Yes Joshua does kind of look like an elf, and yes you would to if you were bald...;)

Joshua found this hiding under his bed... it was not happy to have been apprehended and was making a terrible ruckus. Last I saw it had been tamed and was living on top of a bookshelf.

Monday, June 15, 2009

Fun in the sun... Day 215 15JUN09

Joshua had another great day. He got up early and went to the clinic to get his counts checked. The results were real good, his ANC is over 3000 and his platelets are good. So when Renee was talking to Sally and she said something about going to the pool we jumped at the chance. It was a beautiful day and the pool was great.

Joshua, Jarrod, Cameron, and Jayden all played until they were just worn out. It was great to watch Josh interacting with other kids and having a fun time like a normal child. He loves nothing more than being in the water and I swear he and Jarrod would both grow gills if we left them in too long. The pool even had a cool water slide that they really enjoyed. Okay I really enjoyed it too:) We all got some good old Florida sun.

After we got back and had diner Joshua and Jarrod were both siting on the couch and couldn't keep their eyes open. They went to bed and promptly fell asleep at 6:30. Yeah! Parents night off! I wish I could say Renee and I did something memorable but we were both pretty tired as well and just relaxed. As she was getting ready for bed we realized that we were having so much fun that we neglected to take a singe picture today.

All in all it was a right fine day by anybody's standards.

Sunday, June 14, 2009

Babies, Birthdays, and Sushi... Day 214 14JUN09

Joshua had a great day. Jamie and Christian came over to spend the day and play. We also got to celebrate Alecia's 28th (she said) birthday. I'll let the pictures do the talking tonight.

Joshua with Jamie was incredibly touching. It is beautiful to see them, all three of them, interact. Joshua will truly be a special uncle.

Our favortie sushi chef in training made a wonderful spread tonight to take to Alecia's party. He just keeps getting better.

Give kids, even big ones, a little extra time and some napkin rings and you will laugh until you cry.

Happy Birthday Alecia! (Even if it really isn't your 28th:)

Saturday, June 13, 2009

De-accessed... Day 213 13JUN09

Joshua got to start the day by getting chemo. I get up like any other morning, get a cup of life giving coffee, and grab a handful of syringes and medical supplies so I can give Joshua something we can't handle without gloves on. Just an average day here at home. It stops me in my tracks sometimes when I realize how normal all of this has become for us. It is now a simple matter of thinking about what we need to take care of today. What meds Joshua is supposed to take and when.

The rest of his day was a lot better.

After we were done he got to get his port de-accessed. It is a great feeling for him when he doesn't have that tube coming out of his chest anymore. He did really well through the whole process. He spent a good amount of time playing with his LEGO's in his room. He took all of these pictures himself to show what he has been working on lately.

He takes great pride in what he has built and loves to explain it to you. We love to listen.

So far the chemo is not affecting him too bad. He is a little tired but has had no other symptoms. We had a restful day and got to spend some good quality time as a family. I got the special treat of having Josh read a book to me all by himself. I was very proud of him. Later on he got the chance to beat the pants off of me playing his pokemon game.

After more meds this evening it was off to bed. Tomorrow is church and the kids are coming over to spend some time with us. Only 93 more days until our granddaughter is due. Yikes! She will be here before we know it. Jamie has been doing great and she is doing a good job keeping the baby fed and healthy.

Friday, June 12, 2009

Fryday... Day 212 12JUN09

It's Friday and I have just been told by my husband that his brain is fried and I need to write the blog tonight....so hear it goes....

Joshua's morning started out a little rough but overall he had a good day. He awoke early and was very restless. Before Lee headed off for his long day at work he gave Joshua another chemo treatment. After lunch Joshua's energy picked up and he was busy at work helping me rearrange and organize his bedroom. We helped Jarrod organize his room earlier and when all was said and done, they were back at building more legos. After all, we did find more books of lego designs under the pile of junk I found stashed into the corners of their rooms.

The only real excitement for the day was waiting on the refrigerator repair guy. He eventually came... an hour after his scheduled time. Yes, we do have to have a new ice maker installed, but of course, he didn't have one on the truck. Oh, and the best part, was that he didn't know when we would get it because it's friday and he was heading straight home from our house. Sound typical?

Somedays the little things really get to you when you are constantly fighting to keep control of the big things! Thank God I have a wonderful husband that I can call anytime to get those "little things" off my chest. He at least lets me think that he is listening....that's all I ask!

Luxury accommodations... Day 211 11JUN09

Joshua and Renee were treated to luxury accommodations on the new Hem/Onc floor at the hospital. Just kidding. The blue couch/futon thingie was apparently not terribly uncomfortable according to Renee. Joshua has slept in so many hospital beds he doesn't seem to mind anymore.

Their stay was at least mercifully short this time. Josh got home just after lunch today and immediately went to work on his LEGO police command center. Although the official grand opening was only last week it was, according to Joshua, in need of a complete remodeling and rebuilding. The new and improved center was put back into operation early this evening.

He was a little tired after all of the chemo but other than that was doing very well. We are back to having chemo drugs in the refrigerator and I will start giving him his cytarabine in the morning. He is also taking a new drug thioguanine which is in pill form. We are keeping our fever fingers crossed as cytarabine in the past has caused his temperature to rise. So far he has stayed cool as a cucumber. Lets hope the trend continues.

I found this picture I took of Josh a couple of days ago when he and Jarrod were working in the garage. It was too cute not to share.

The shirt says it all...