Port problems... Day 298 06SEP09

Joshua has been having port problems since last night. His port has been acting like it is blocked when they try and draw blood from him. After trying several things throughout the day it started functioning again correctly this evening. His temperature is still not behaving and he is running fevers as son as the tylenol wears off. The recurring fevers means more blood cultures to check for possible infections. Tomorrow we will spend yet another holiday in the hospital. There have been so many we are losing count. We are still awaiting the results from all the tests that were run late last night.

Joshua is his usual remarkable fashion is back to having fun. He had an all out nerf dart war with Aimee and Deesa this afternoon while we were at the hospital. There were darts everywhere and we were all laughing hysterically. Our family at the hospital is wonderful and they make Joshua's life so much better. We are very lucky to have such great nurses to take care of our Joshua.

Here are some pictures of the start of our weekend.

CANCER SUCKS!... Day 297 05SEP09

Cancer sucks! Joshua started to feel bad this afternoon and by five o'clock he felt warm and was complaining of joint pain. His temp, 100.2. By seven o'clock it was 101 and fifteen minutes later it was 101.6. We were packed and gone from Disney in under twenty minutes. Joshua never even got to set foot in any of the parks. Both the kids were very very upset with huge tears streaming down their faces as we realized our vacation has just ended with no notice. Renee and I are totally stressed. This constant upheaval is so unfair and something that we just have to shoulder and bear on. Joshua's comment as we barreled down the interstate on our two hour drive to the hospital, "this is why I hate having cancer." Jarrod's memory of the trip, "at least I got to ride on the monorail."

This was a vacation that we could never have afforded on our own. It was something that the whole family has been looking forward to for months. We had the perfect room with the perfect view. We were with our cancer family and having a great time. It was over before it started.

We will try and figure out a way to get the kids back to Disney sometime. For tonight, Jarrod and I just got home and Renee and Joshua are stuck back in the hospital.

Every time before that Josh has had joint pain his hemoglobin has been very low. The initial CBC came back with his HGB at 6.1 which is way below the transfusion mark. The nurse was going to re-run it real quick to make sure because his hgb Friday morning was 8.9 so it is a substantial drop. We have no idea what is pushing Joshua down again but he has been accessed, urine sampled, cultures started, chest x-ray ordered,etc... Hopefully it is not another infection or some bug he picked up. He still has the cough and it does not seem to be getting any better. We should have most of the results back tomorrow.

CANCER SUCKS!

Disney! We made it! Day 296 04SEP09

A quick post this morning from my phone. We are at Disney world and having a wonderful time so far. We have an amazing view of Cinderella's castle and space mountain from our room. It made a great place to watch fireworks last night. We are taking lots of pictures and will get them posted as soon as we get home.

Jamie is still waiting for the baby to arrive. Maybe next week.

School and grilled cheese... Day 295 03SEP09

Joshua spent most of today either catching up on school work or making and eating grilled cheese sandwiches. He must have eaten eight or nine of them today. He has eyes for nothing else, I was unable to even tempt him with a caesar salad. Prednisone does weird things to you...

He is looking a little pale and we are hoping that it is not because his hemoglobin is low again. We will know for sure in the morning, Renee is taking him to the clinic first thing to get his counts checked before we bug out for the weekend. We are all very excited about our upcoming weekend. It should be a great time!

We still do not have an actual arrival time for our grand daughter. Jamie went to the doctor this morning and they are going to wait another day. She goes back in the morning to see how things are progressing and may have the baby tomorrow. We won't know until in the morning.

HOME!... Day 294 02SEP09

I got a call this morning from Renee with a simple request. Come pick us up! Dr. Wynn had decided that although Joshua's counts are still borderline it was about time for him to come home. I wasn't about to argue with that logic. So Jarrod and I hopped in the car and drove to the hospital to pick up the other half of our family.

Joshua will go back to the clinic on Friday morning to check his counts before we leave for ROCK camp in Orlando. Yeah!!

Joshua was sitting on a pillow on the floor this afternoon while playing on the computer. I managed to sneak a little video of him.

Love the air guitar!!

Jamie is getting super close to delivering a new baby into our family. It might even be Thursday morning. She goes to the doctor tomorrow morning to get another ultrasound to check on the baby and they might go ahead and deliver the baby tomorrow. If not then possibly on Friday. We really don't care what day it is as long as Jamie and the baby are safe and healthy. Jamie and Christian came by to drop off Bella this evening. She is going to stay with us for a week or so while they get the baby home, etc... I took a quick video of Jamie and asked her and Christian if they were ready for the baby to come.

I am so glad that our family is reunited and much more quickly this time than has been our norm in the past. The Prednisone monster is still very much with us, Joshua had a complete meltdown this evening because we could not make grilled cheese sandwiches exactly like the hospital does. Thankfully this is only a temporary thing. Unfortunately he will still be under the effects of the steroids while we are at Disney... I wonder if they have enough food on hand...

Still staying... Day 293 01SEP09

Joshua's counts are down and so is his temperature. Good and bad together. His ANC is down to 294 and his platelets are down to 50. This is the point where Renee and I would be more than happy to put Joshua inside a padded suit to keep him from bumping himself.

Strangely when Joshua's counts are at their lowest he seems to have the most energy and the uncontrollable desire to do outrageously dangerous things with anything that has wheels attached to it. Pole surfing anyone?

This is day 2 of the current steroids cycle and the Prednisone monster has arrived as mean as ever. Its liking packing Godzilla and his older brother into a seven year old body. Thankfully he has not yet mastered the art of breathing fire. Luckily this is only a five day cycle and should have the actual benefit of pumping up his counts.

We are unsure when they might release Josh to come home but the clock is ticking away towards Friday. We were all bummed to see that Demetri was back in the hospital this afternoon with a fever. We all hope he cools out quickly.

Jarrod and I spent the afternoon at the hospital hanging out. We managed to get a good walk in with Renee and Joshua in between rain sprinkles. Later we came home and made a delicious dinner and spent some time chillaxin with each other.

ENT... Day 292 31AUG09

ENT stands for Ear Nose and Throat which is who came to visit Joshua this afternoon. It also stands for Extra Night There.

Joshua is doing good, his fever has stayed away and he is feeling fine. His chest xray came back clear and his CT scan of his sinuses was okay as well. He still has a little bit of a cough but no hits on any of the tests yet. So he will spend another night in the care of the TCA nurses. His ANC is down to 390 and his platelets dropped to 70 so we are not sure when they might release him. Renee and I have been lobbying Doctors and nurses to try and get him out in time to go to Rock Camp. They all know how much he wants to go. Only time will tell.

Jamie called today with wonderful news, the baby will be delivered by caesarean on Friday morning, provided she lasts that long. We are truly excited and can't wait to hold our first Grand child. Is that still sounding convincing? Just kidding, we are very thrilled!