February 25 - Keep those prayers coming!

Oliver is having more and more periods of being awake-so much fun for Sean and I to get to see his beautiful eyes! Yesterday was a big day for our family. We decided to go ahead and start Oliver on chemotherapy. I get choked up just writing those words. This was not an easy decision to have to make. The steroids appear to be helping Oliver and the hematology/oncology team thought starting Oliver on 1/4 of the dose of etoposide (chemo) that they would normally use for his weight was a better idea than starting him on a full dose. I know I said this in an earlier post but I want to repeat Oliver has not been diagnosed with cancer (or anything for that matter). We are treating him for HLH without diagnosis because HLH is one of the top contenders and if untreated Oliver would deteriorate quickly. There are still some tests out for metabolic disorders that are being considered, but they take weeks to get the results and if Oliver has HLH we don't have that kind of time. If we discover that Oliver does not have HLH they can stop giving him the chemo drug. He doesn't have to be weaned off of it.

At rounds this morning everyone was happy with how Oliver is doing today. He has great urine output and is down 300 grams in weight (remember, this is a good thing right now!) His respiratory status is showing improvement and they are turning down the air flow in his cannula from 6 ltrs. to 4 ltrs. His respiratory rate has slowed to a normal rate and he is not working so hard to breath anymore. He is receiving about 1 platelet transfusion a day now instead of two and he's only getting half the amount of platelets he was getting before. This is because they lowered the threshold to 5,000...his bilirubin is also down and he looked slightly less yellow this morning :)

Because Oliver is on chemo we have to be extra careful with his body fluids. The nurses wear a gown, full face mask and double gloves to change his diapers. Yesterday Sean was holding Oliver and when the nurse came to check Oliver's vitals she gave Sean a confused look and asked if he was sweating...NOPE! Oliver had soaked his diaper...through the blanket and onto Sean! Sean returned home with his shirt all squished into a biohazard bag. Because he's on such a low dose of chemo the doctors aren't really concerned with Sean's exposure. Thank goodness!

Thank you to all of Sean's awesome co-workers at ATI for making two giant posters for Oliver's room! We love them and appreciate you thinking of us and cheering for Oliver! Not only can we feel their love and support but Sean's team at work has graciously picked up the enormous vacuum created by his absence. ;) Sean's boss Bill has been incredibly supportive of Sean taking as much time as he needs to be here supporting Oliver. We feel so blessed that Sean has such an amazing work family. Thank you all again!

So many of you have reached out to us and I thank you all! Please don't stop!!!