Nick spent 4 days admitted in the hospital after he started chemo on Aug. 8th. After he was discharged, we went back to our room in one of the St. Jude housing facilities, where we wait to be moved to the long term housing, as soon as a room is available. It has been a blessing in my eyes, being able to stay at this particular location so long. Here, we conveniently receive meal cards to use at the cafeteria, and being right on campus, we just walk to appointments rather than plan on shuttle service. Best of all, nurses and doctors are just steps away, 24/7! We will also be getting our own apartment this week when the rest of the family joins Nicholas and I, which is thanks to the many of you who have helped us financially cover these huge, additional costs. Since St. Jude only provides housing for families of 4, we needed some extra room!

All things considered, Nick handled his first round of chemo really well. Nick remained on fluids and nausea meds round the clock for the first 3 days after being discharged, which meant, I needed to learn how to give Nick these meds through his port. There will be a lot more I will be learning along the way, next will be how to use a g tube. Nick has struggled with his weight, and though he gained some over our break, I think the anxiety got the best of him again and he lost it all. He returned to St. Jude weighing less than what he did when we left. Nick is down to 48 lbs. He was 61 in April when this nightmare began. Being NPO for sedations through radiation definitely contributed to the loss, but even though that?s behind us, it is a continual struggle taking meds and eating food, and we need to do something about it. So Nick will get a feeding tube before his next round of chemo in September. At this point, we are thankful for all the positive things a g tube can do for him. Not only will he get all the nutrition he needs, he can also get his meds through it, which has already made Nick feel more confident to get through this. And he can eat what he wants, when he wants, so there is a lot of pressure taken off his shoulders.

Nick gets blood work twice a week now. He needed a platelet transfusion last week, and a blood transfusion a couple days ago. He had a slight reaction to the platelets, but that is fairly common and it was completely controlled with Benadryl. Nick?s ANC is 0, which means he is neutropenic, and cannot fight any bacteria. If he develops a fever, he needs to get admitted right away and will have to stay there until his counts rise again, about a week or so, it all depends. There have been a few days that he went to bed at 3 or 4 in the afternoon, and was down for the entire night, but otherwise he has felt pretty good. He is actually even eating! Cheerios, bananas, strawberries and french fries. That pretty much covers it, but the amount is impressive!

Nick?s outpatient schedule has been much less rigorous these last couple weeks compared to a week of radiation. He gets labs - twice a week, school - 3 times a week, clinic visit - twice a week, and music - once a week. He also has random Occupational and Physical Therapy visits mixed in. Once a month Nick will also be receiving a hearing test to monitor any hearing loss resulting as a side effect. For fun we take walks, read Keys for Kids, play video games, watch movies, play sorry, and loves to try and defeat me using ?The Force? - and just about ends up victoriously every time. Good thing I brought 2 lightsabers!

This is a very exciting week for us. Reuniting in time for a special celebration. A gift we will forever be grateful for.

Philippians 4:13