Typical Monday... Day 236 06JUL09

Today was a typical Monday. You know the phrase "Don't Sweat the Small Stuff"? Well today it was true. Joshua awoke very restless and it was due to pain in his hips. I quickly found our nurse and asked what his counts were because sometimes the hip pain is from low hemoglobin. This was not the case however. His counts are on the rise and his hemoglobin has stayed the same. Neither good nor bad news.

Our next step was to try to give Joshua Tylenol or a heating pad. He opted for the heating pad because he just didn't want to have to take any more pills. I don't blame him. So at 8:30 am our wonderful nurse put in our order for a heating pad. By 1:00 pm still NO pad and Joshua was restlessly walking around and moaning. Our nurse had been calling every hour trying to get one and almost tackled the poor kid earlier because he had one but it was for a different room. So I decided to go get in the car, drive to the closest Walgreen's and buy our own heating pad. I had one in 15 minutes back in the room. I guess I could have complained and caused a big ruckus but my thought was "Don't Sweat the Small Stuff". So, after all this the heating pad finally arrived about 10 minutes later. Joshua decided to keep using the one I had bought but our nurse plugged in the other one anyways. After about 15 minutes, Jarrod noticed that the bed was wet. The hospital heating pads are filled with water and apparently the one we waited for all morning had sprung a leak!!!!!! Typical Monday!

I walked out of the room laughing and our nurse says "That's not funny!"

Oh yes it is!!!!!!

My thought on the day is people get too upset everyday over the littlest things. Yelling occurs, blood pressures get raised, temper tantrums, crying and sometimes fists fly.

I'm guilty of it. I've done it. But today I didn't. I've noticed that the little things don't bother me as much. We have been slapped in the face with cancer.

We have had our breathes taken out of us and knocked to the kitchen floor when the voice on the other end of the phone says your son has a large mass on his chest and we believe it is cancer.

It gives you a bigger perspective on life and the little things that used to bug you.....just don't matter anymore.

Joshua has had many disappointments in life and most of these have occurred in the last nine months. But, unbelievably so, our little guy wakes up everyday and keeps on going. We have tried to plan things for Joshua but they get cancelled because his counts are too low or he runs a fever and we are in the hospital. Joshua doesn't dwell on it. He knows that if he can go he will go. Camp is looming in the near future and we are still in limbo as to when or whether he can go. Joshua calmly tells me that it is OK if he goes late but my heart breaks when I can't give him what he wants, especially when it something especially for him. All he wants is to be a normal little boy again and cancer keeps reminding him that he is not.

Life is way too short to worry about the things that you can not personally control, so Joshua, Jarrod, Lee, and I will Laugh and Play and Live Life to the fullest whenever and wherever we can.

Lucky little guy!... Day 235 05JUL09

The Doctor was unable to compute Joshua's ANC today because he essentially at zero. The one good thing about bottoming out is the only other direction is up. You would have no idea that his counts are so low, he acts pretty normal most of the time. Except...

He had a few meltdowns today, one because the kitchen made his grilled cheese sandwich with cheddar instead of american cheese. The other over the distribution of popcorn between him and his brother.

Both were resolved without incident and the world is again a good place.

The meltdowns are a sure sign that Josh is: A) Sick and tired of being in the hospital and B) His counts are lower than science can measure.

He did however get to do something today that made all of his brothers and me jealous.

While he and Renee were taking a walk around the hospital they happened upon the helipad where the Bayflite helo lives. The pilot was working on the helicopter and started talking to Josh. Turns out he is a retired Coast Guard helicopter pilot. He let Joshua come in and check out the helicopter up close. Lucky little guy. It was a real treat for Josh.

We spent the afternoon hanging out at the hospital. Jarrod played with Josh while I spent some time with Renee. Those two are so funny when they get going.

See what I mean.

Unless something rather miraculous happens in the next two days I am pretty sure Josh will either miss or be a few days late for camp. It is a frustrating way to live for all of us but especially for Josh. We never know what he will be able to do and even the best laid plans can come unglued rather quickly. So tomorrow is a new day and a new set of challenges to overcome. We are hopeful that his counts will reverse and start, like Bayflite, to rise up into the sky.

Independence Day - for real... Day 234 04JUL09

Joshua got a day pass this afternoon even though his counts have fallen again. He was able to leave the hospital for a few hours in between vancomycin doses to come home and be with the family and celebrate the 4th.

Jarrod and I started early with our friends and neighbors Fritz and Monica who fed us a wonderful and very traditional lunch of hot dogs, baked beans, potato salad, fried chicken, and watermelon! It was really good and lots of fun. Especially after a hot morning of doing yard work while battling vampiric and hungry mosquitoes.

Jamie and Christian came over later to hang out for a while. Jamie is feeling good and is doing a great job of making sure our granddaughter gets enough nourishment.

This is a 3D ultrasound image of our upcoming granddaughter! I was blown away when I saw the image. What amazing technology. Isn't she beautiful!

Joshua arrived around five and spent the next couple of hours playing with Christian and Jarrod. I think they wore Jamie out...

The featured event of the evening was of course a pyrotechnic display by Jarrod and Christian. Although on a very small scale it was nonetheless entertaining. Renee's parents even came by to witness the spectacle.

After it was over Renee and Josh had to head back to the hospital so he could get hooked back up and get more meds. It was great to have him home even if it was just for a couple of hours. Camp is still a big question mark and I am sure it will go down to the wire. We can only hope and keep an crossing our fingers.

Just a day... Day 233 03JUL09

Today was just that. Another in a long string of days in the hospital where nothing really changes all that much. The wheels keep turning, Josh takes his meds. His counts were a little improved today, his ANC inched up to 44 and his potassium made it to 3. It is an upward trend for at least the last 24 hours so he is heading in the right direction. No word yet on whether or not camp is going to happen. He will definitely need to get his counts up quite a ways before they will sign off on him going. We still have a few days so we are hoping and crossing all our appendages.

Renee and Joshua took advantage of the short break in the cloud cover to get a walk in outside. Renee said he did really well walking and they made a lap around the entire hospital. Josh was thrilled that he got to see the medivac helicopter sitting on the pad behind the hospital. He told me that they were working on the blades and they were only 4 inches from his face. I think I need to take him a ruler...

Joshua continues to look good and he is not acting like his counts are down so we are thankful for that. He also hasn't complained about being in the hospital this time which tells me he feels like he needs to be there. We will go up tomorrow and try and watch some fireworks from the top floor of the hospital. Hope everyone has a happy and safe 4th.

Day of friends... Day 232 02JUL09

Joshua having a little dinner.

Today was a day of visitors and friends. Joshua got a visit from Jamie and Christian and we got to see a 3D ultrasound of our granddaughter. It was amazing, you could see her entire face and she is very beautiful already. Only 73 more days to her due date. Grandma and Pa stopped by for a visit. Lisha, Hayley, and Mercedes came by and brought all of us a wonderful dinner and chocolate cake! It was delicious and I know the the chocolate made Renee feel a lot better.

Today was also a day of memories. Renee and I were standing in the hallway watching Josh in the playroom when a couple walked by holding hands and looking very lost. They stopped a little down the hallway and held each other while they cried. That was us 232 days ago. Our hearts breaking while we watched our baby fight for his life. Watching them comfort each other instantly took me back both in my mind and in my heart.

It never leaves you.

It gets a little better but it is always with you.

Joshua is still on a slight downward trend. His ANC has dropped to 17.6 and his platelets are 41. His potassium was low as well so he got two rounds of potassium to get it back to normal levels. The first round did nothing but the second one he moved up. Just another little bump in the road. His energy and smile are still going strong and he was playing all afternoon. He is not going to get out of the hospital anytime soon with an ANC of 17 so we are just settling in for the long haul.

More Racing action... Day 231 01JUL09

Today was another good day to stay inside all day, it has been raining non-stop. I woke up this morning to pitch black skies and torrential rain. Tomorrow is supposed to be more of the same. Driving around has been a real pleasure.

Joshua's counts slipped a little again, his ANC is down to 33 and his platelets are at 44. He is holding kind of steady but has not gotten a foot hold yet. I would really like to see his counts start climbing back up instead of sliding slowly down hill. He is not acting like his counts are low, he is still eating okay and smiles frequently. As promised, for your viewing pleasure, are several videos of Joshua racing plasmacars and having fun.





Tomorrow is more of the same, Jarrod and I will go hang out at the hospital and Joshua will continue to get pumped full of vancomycin so he can fight off the staph infection. Hopefully the labs in the morning will have an upward trend. We need something headed in the right direction.

10,000 visits... Day 230 30JUN09

Today was a good day to stay inside all day, it has been raining non-stop. Jarrod and I went to the hospital to see Joshua this afternoon and he is pretty much the same as yesterday. His counts dropped ever so slightly. He was a little less active this afternoon than he has been. He had plenty of energy to play several rounds of Uno and Connect Four.

Today we got our 10,000th visit to Joshua's blog. I am overwhelmed and amazed at the number of times it has been read. I never expected to see a number like that. A huge thanks to everyone that keeps tabs on our little warrior. It helps more than you could ever know.

I have been decorating gloves for Joshua since the day he was diagnosed so here is the latest line up.
Staring on the right we have Chickenstien, then Count Chickula, and then Moe. The one on the far left is my best work ever...

Josh got a visit from Preston today and I will have the video of their plasmacart race on the blog tomorrow. I didn't get it from Renee today. So stay tuned...