New day.... Day 155 15APR09

Joshua had a better day today. He spent a good part of the day in the playroom and has even made a new friend. He is still stuck at the hospital but he is at least feeling better. The nausea is still bothering him quite a bit and he has lost a little weight. Time to get him back home and start fattening him up again.

No real idea when the doctors will let him go and he is scheduled to get more chemo on Monday.

Renee found this cartoon and asked me if I could get it onto the blog.

We complain about the cross we bear but don't realize it is preparing us for the dip in the road that God can see and we cannot. 


Holding pattern.... Day 154 15APR09

We are stuck in a holding pattern. Our flight has been delayed.

Joshua stayed pretty much the same today, still running a fever this afternoon. So he gets another blood culture and we wait for the results. He took another dose of Ativan this afternoon so he was in the "no pain" zone for a little while. We are still hoping to get him home for the weekend if at all possible. It will depend on how he is doing the next day or so. I know that Joshua and Renee are really tired of being stuck in the hospital and Jarrod and I really want them back at home. We will keep hoping.

Chance of sunshine.... Day 153 14APR09

The weather today matched the way we feel. It was dreary and overcast with lots of rain. Although the forecast was for a chance of rain. I think it should have been for a chance of sunshine, which we didn't get. Joshua is still stuck in the hospital with no clear end in sight. His ANC is up a little but the fever is still hanging in there. It was 102 when I left his side this evening. He is tired and frail looking. The current thinking is this: the fevers are due to the double dose of Methotrexate; the stomach pain is also from the Methotrexate. The next time he is going to get the same treatment they are going to dose him with hydrocortisone before hand to see if it will control the reaction any better. I hope it works.


Josh only allowed one picture today with Nurse Ellen. She was the first nurse we had when we started this long journey and she was the one who told us a lot of valuable things in the first hours of Joshua's diagnosis. She was right about every single thing she told us and it is something we will never forget. She was leaving today for a well earned vacation in Aruba. We hope she has a great time.

Neither I or Renee expect to have Joshua home any time soon. Not until the fever goes down. I am hopeful that he can make it home by the weekend but time will tell.

Purple Haze.... Day 152 13APR09

Joshua has looked better.

Yesterday really took its toll on him. We noticed  yesterday afternoon as the day progressed that he was looking more and more tired. Renee and I sense how Joshua is feeling, we notice things that normal parents would never see. The slight little miss-steps, the tired way he picks up his foot. Little grimaces that cross his face and disappear in the blink of an eye. The way he will murmur when we are holding him or the little shivers that will sweep his body on a warm day like ripples on a pond. I will notice one of these things and look over at Renee. Our eyes will meet across the room and I know that she saw it too. We don't make a fuss about it, we just adjust and quietly start keeping track. You become an expert on noticing these things. On watching every small thing that your child does. We never have to discuss our plan of action when we are out in public, we both know when it is time to leave or have Josh take a nap or maybe just time to scale back his activities.

His ANC today has dropped to 697 and his platelets are down to 95. He is still having stomach pains so he was prescribed Ativan to help out. It helped all right. Ten minutes after taking it Joshua was stoned. He was siting on the bed with glassy eyes watching TV with a large bag of cheeto's tucked under his arm. Periodically wiping his hand off on his shirt when it got too cheesy. Stomach ache a distant and I am sure hazy memory. Next thing you know he will be asking for a black light and a lava lamp for his room.

Renee went out in the hallway to talk with the child life specialist and she heard Joshua talking away in the room. When she opened the door and asked him who he was talking to he looked at her dumbstruck. He looked over at the bed where she normally sits, back to the door, back to the bed. He could not figure out how she got out of the room. At this point he began to giggle in one of those silly, I am wrecked out of my mind, ways. Renee swears he was humming the melody to Purple Haze under his breath.

Right now we are stuck in waiting mode. Waiting to see if we can figure out what is giving Joshua all the problems he is currently having. The fever is still there and the stomach pains have been going on for quite a while now. He may get an abdominal CT tomorrow to take a look at the lining of his intestines and stomach. Renee and I would really like to finally have some answers. He looked really bad today and is back to being the frail little man of weeks past. If he sits up he gets a really bad headache and the Ativan makes his eyes really dry and scratchy. He was resting tonight when I talked to Renee. Hopefully he will get a good nights sleep and maybe we will be closer to an answer in the morning.

Until then we wait and kiss the sky.

Easter.... Day 151 12APR09

It almost didn't happen. Renee called me early this morning, Joshua was running a fever. He had been up several times during the night with a headache and an upset stomach. We were going to have to bring Easter to Joshua. Truth be known the Easter Bunny had already visited the hospital and left some wonderful things behind.

Joshua had a bunch of chocolate bunnies left from the hunt at the hospital yesterday. So he decided to give them to all of the nurses on the TCE. He saved the biggest one for Dr. Obzut because, "She works very hard." It was a very sweet gesture.

It was several hours later as I was getting everything ready that the phone rang and Renee let me know that Joshua had managed to actually wrangle a day pass. They were on their way home for a few hours. Even though he had a fever of 101 after taking Tylenol.

Joshua had a fun time hunting for eggs. Unfortunately it took every drop of energy he had. By the time he was finished he was exhausted. It breaks my heart to see him so tired and run down. At least he got to be with his family for a little while and he got the chance to look for eggs with all of the other kids. After a late lunch it was time for Renee to take him back to the hospital. He got a transfusion of Albumin when he got back and promptly fell asleep. I hope that he and Renee can get a good nights rest tonight. I know that they are both exhausted from the last couple of days.

Jarrod and I will continue to take care of things at home with the hope that Joshua will be back with us real soon.

I have posted a bunch of pictures from today on our Flickr page Click HERE to take a look.

A very Happy Easter to all of our friends!

He rose. We left..... Day 150 11APR09

A beautiful face hovered above mine at 6:30 this morning. I blinked my eyes. As the cobwebs of sleep receded from my mind the angelic face said, "We are going to the hospital."

Joshua's had woken up a little earlier to go to the bathroom and Renee went out to check on him. His head was hot. She took his temperature. 101. Time to make the call. So she called and then they went. Josh is back at our other home, the TCE at St. Joseph's.

So now it is the same battery of tests yet again. Cultures, xray, etc... His counts are lower, ANC at 962, and his hemoglobin was low. He is getting an antibiotic and got a red blood transfusion this afternoon. He looked good when Jarrod and I went to hang out with him this afternoon.

This is the view from his room. He can sit in bed and watch the Medivac helicopters come in to land. It is pretty cool!

The doctors are thinking that the fevers might be from the combination of Methotrexate treatments he got on Thursday. They are going to meet and discuss the options this Tuesday. In the mean time we will continue to follow all the usual fever protocols. There is a good chance that Josh will get a day pass tomorrow to come home for Easter if his cultures are negative, the xrays are clear, and his furnace stays turned down. If for some reason he doesn't we will take Easter to him at the hospital. He got an early start today when Grandma and Grandpa Gandy came out to visit and brought some Easter gifts. They even managed to have a hunt for chocolate bunnies.

Later Joshua got a special visit from Brandon and Roxy who are down for the weekend visiting family. They came by with Jamie and spent some time with Josh. It was great to see them, we miss having them close by.

So we get to spend another holiday in the hospital. We're pretty used to it. After all we have spent almost every holiday since Joshua was diagnosed at the TCE. It is the gypsy way. At least we had nine great days at home with Josh. He ate a lot and played outside, took naps and hung out with his brother. Hopefully he will be back real soon so we can pick up where we left off.

Not the best.... Day 149 10APR09

Today was not the best day Joshua has had recently. He was still having a lot of pain in his back and legs. He lost one whole meal to the bucket this afternoon, and he is still running a low grade fever of 100.0. That is only 1 degree away from "making the call". His attitude was still very good, Renee tells me. He was sleeping peacefully when I got home. Friday is the day I am gone from early in the morning to late at night. We are going to cross our fingers and probably our toes that his fever does not escalate. I was talking with the Easter Bunny earlier and he definitely wants Josh to be at home when he hops by on Sunday.