Day pass and dinner... Day 305 13SEP09

I got a call from Renee this morning to come and pick them up as Joshua had gotten a day pass. His counts have actually dropped to 79 but Dr. O took pity on him and let him escape for a bit. It was great to have him home for a little while where he had a chance to relax and play with his brother. Jarrod and I had been saving a culinary surprise for Joshua, his favorite crab legs. We had found a really good deal on them last week and popped them in the freezer until Joshua could get home. So I made sushi and Renee cooked up the crab legs and we feasted. It was a great dinner and Joshua abandoned grilled cheese and really tucked in. He ate a huge dinner and was quite satisfied when he was done. Josh is a crab shelling machine and he really enjoys going to work on some.

Unfortunately after a hot bath it was time for him to return to the hospital and get hooked back up. It looks like we have several more days until he will be able to get home for good. It is just a matter of his counts climbing back up. Besides getting him out of the hospital we need to get him back on chemo, we are already two weeks behind on his treatment schedule. He also got his test results back today and we are discontinuing the Dapsone. He will get monthly doses of nebulized pentamidine instead. Its one less pill for him to take everyday.

Jamie, Christian, and Allie got to go home this afternoon. Both Jamie and Allie are doing great and I am sure they are happy to be back in their own bed. We are going to give them a few days to get settled and then go visit and see the new nursery.

Duck weather... Day 304 12SEP09

Today was a day perfectly suited for ducks and other web footed creatures. It has rained almost non-stop for most of the day. Joshua is still stuck with his ANC only up to 128 today. At least it went up a little. Tomorrow they are going to run another specialized blood test to see if he is handling the Dapsone that he takes okay. A lot of kids get cyanotic when taking Dapsone and Josh has been looking a little pale lately so Dr. Obzut just wants to check and see how he is doing. Today marks a week in the hospital and Joshua is definitely starting to get stir crazy. I am afraid we are still several days from getting him back home.

Christian, Jamie, and Allie

Uncle Joshua

Grandma loves her Allie

Allie and Jamie are doing great and will get to go home tomorrow. Joshua got another day pass and we went to visit this afternoon. Joshua is already a wonderful uncle and really enjoys holding and talking to little Allie. He has so much that he will be able to teach her as she grows up, he is already wise far beyond his years. Jamie asked me to say hello to everyone. I think she is suffering from blog post withdrawal. Up till now she has never missed a day leaving a comment. I am sure she will get caught up after she gets settled safe and sound in her own house.

Friday... Day 303 11SEP09

Just a quick update for tonight. Joshua's counts have dropped to 92 so he is still stuck but we are hopeful he will start to turn around soon. Allie and Jamie are doing great. I went by this afternoon to see them and spend a little time holding Allie. She is adorable! No new pictures but I have been promised a bunch this weekend as soon as Christian can download them from the camera. I will post them as soon as I can.>

It's A Girl!!... Day 302 10SEP09

It is my great honor and privilege to welcome Allie Nichole to our family. Our first granddaughter was born at 12:17 and weighed in at 8bs 15 oz. She is truly beautiful and a wonderful addition to our clan. Jamie did wonderfully and is healing and resting well. She wanted me to thank everyone for their support and all the wonderful things that helped get her and Christian ready for this momentous day. Allie is the picture of health and is doing great tonight. We all got a chance to go and see her briefly this evening. The reality of becoming grandparents is still quite new to us but it feels good. Allie is also blessed with five great grandparents, two great uncles, three great aunts as well as a great great grandmother. That's five generations folks! Wow!

Uncle Joshua

Uncle Jarrod

Great Grand Pa

Great Grand Ma

We are very proud of Jamie and Christian and know that they will be amazing parents and unwavering caretakers of their new treasure.

Joshua and I had a good night last night. The morning could have been a little better... We got a rather early wake up call by Dr. Tebbi who pronounced that Josh was going to need another transfusion of red blood. His hemoglobin counts had slipped too close to the refill mark. As Dr. Tebbi put it, "Josh has frequent flyer miles with the blood bank." The transfusion went off without a hitch and Joshua did not have any allergic reactions. He is still holding on to a low ANC (it was only 128 today) so coming home is not an option anytime soon. With luck, and if he follows course, he should start to turn around in a day or so. I am hoping that we can get him home for the weekend.

The newness of a baby's life is something that always pulls strongly at my heart strings. The wondrous splendor of the architecture of a newborn reminds me that although there is much ugliness in the world there is perfect beauty in the universe. Amidst the cacophonous din of the world a newborn is a perfect note sounded clearly. Welcome to our world Allie! Your note is crystalline and rapturous! Remember always that we love you.

Proud Grand Parents!

Nerf Wars. Day 301 09SEP09

Joshua's theme today... Anybody want to come to my room and play nerf wars? Joshua was doing great today. He had no ill effects from the IVIG from yesterday. He was full of energy and you would never know that his ANC was only 120.

We started off the morning by visiting his friend Preston down in the clinic. They played cars while Preston was getting his chemo. After lunch Joshua took in a round of Nerf Wars with Ms Desa again and then we got "Reprimanded" by the hospital security guard because we were shooting nerf darts into the air in the lobby with another patient and his mommy!!!! We think the guard was just jealous because he couldn't play. We pleaded for him to kick us out but that didn't happen! After that we headed back to the room for dinner and Joshua found another new friend and they had more fun playing between their two rooms.

We are only here until Joshua can bring his counts back up. Hopefully they will start to rise tomorrow. Either way we already have a green light for a pass to get out and see the new baby whenever she graces the world with her presence. We can't wait!!!!!

IVIG and the Jonas Brothers... Day 300 08SEP09

Today marks 300 days that we have been fighting cancer. It seems like 3000.

Joshua got his first IVIG transfusion this afternoon without any problems He was pre-medicated to hep avoid anaphylactic reactions and it worked. It was a nail biting experience for the first hour and a half as he was checked every fifteen minutes as they slowly ramped up the transfusion rate. It is not much fun to sit and wait to see if your child will all of a sudden turn bright red or begin having difficulties breathing. But Joshua manage to get through it without any ill effects so far.



While he was getting transfused a special gift arrived for him. A hat signed by all three of the Jonas brothers! It came thanks to an organization called Caps for Kids. Joshua was really excited. Thanks to Caps for Kids and to the Jonas brothers for their kind gift!

No fever today but his counts are still dropping and he probably won't be getting released anytime soon. We remain a family divided.

Labor Day... Day 299 07SEP09

Nobody was really doing much labor today. Joshua was at least fever free today although his counts are still way down. His ANC was 186 and His platelets were 58.He was feeling pretty good and had another impromptu Nerf war with Aimee and Desa. I am not sure if anybody really won.

Barbie, one of Joshua's nurses made this wonderfully cool Phineas and Ferb sign for his door.

We got back some more of Joshua's test results only to discover that on top of every thing else he also has an immunoglobulin deficiency in two of the four antibodies. This means that his defenses against bacterial or viral infections are much reduced. This is apparently relatively common for leukemia kids. Joshua will start getting IGIV transfusions to add back the antibodies he is missing. The infusion takes 6-8 hours and he will need one every three to four weeks. We should have all the details tomorrow. Add this to the list of numbers we can stress out about and track with fervor. Still no idea when Josh might be let out of the hospital, with luck it will be in the next day or two. All depends on his temp and his counts.

Jarrod left this evening to spend a few days with Renee's parents as I have to start back to work tomorrow and all my classes are at night this quarter. The house is awfully quiet without my big buddy around. We at least had a nice dinner together before we bundled him off.

Tomorrow is back to the hospital to be with Joshua and Renee for a while and then off to work.