Updates

Well. Dang. I should just give up on trying to predict how this is all going to play out. We went in for our weekly appointment today and instead of getting our start of Interim Maintenance chemo we got sent home. Ethan’s ANC (natural immunity) was 135 despite having had no chemotherapy for nine days (normal is at least 1000). He qualifies as severely neutropenic which means: no chemo, no moving on to Interim Maintenance and no checking into the hospital on Monday. I expect it may have been a result of the massive inflammation his body had to deal with after the anaphylactic shock. In any case, I really wasn’t expecting it. This is the lowest his ANC has been since he was diagnosed. I was literally dumbfounded. So Ethan is officially “bubble...

Another phase of treatment down. We have finished Consolidation! Next Ethan moves on to Interim Maintenance. We are enrolled in a research study testing high dose methotrexate. Unfortunately this means we must do several hospital stays over the next two months. I feel the benefit outweighs the inconvenience. High dose methotrexate is already standard of care for B-cell ALL kids and has shown great promise in preventing relapse in T-cell kids. The methotrexate is given via IV and then 48 hours later a second drug is given to inactivate the methotrexate. Then we have to wait for it to clear the bloodstream before we can go home. So we will be there at least two nights but it maybe up to six nights. We will receive the same treatment on May 21st, June 4th and June...

Home again, home again. It’s been a long week. Ethan is in excellent spirits despite all his counts being low and having to take antihistamines around the clock. Here are my “take home” lessons (har, har): It Isn’t Always Gratifying When You Are Right A month ago Ethan had a reaction to PEG-asparaginase: nausea, vomiting and fever that we stayed a night in the hospital for. We were told repeatedly that it was not a reaction to PEG. The doctors told me (and my mom) point blank that those were not PEG side effects despite a plethora of documentation that says they are. Our discharge paperwork from that stay said “unidentified gastrointestinal virus”, meaning they wanted to blame it on a virus despite the fact that none of his...

I thought I understood the meaning of fear. I have a whole new level of understanding now. Today Ethan had an anaphylactic reaction to PEG asparaginase. This was his third dose. Exactly one month ago we were in the hospital for a night with vomiting diarrhea and fever after receiving his second PEG dose. Those were normal side effects but today was a true allergic reaction. Risk of allergy increases with each subsequent dose of this drug. About 5 minutes after starting the PEG today Ethan complained of an itchy bottom and ears. He was very agitated and red in the face. The nurse immediately turned off the IV. I scooped him onto my lap and noticed he was getting a bump rash on his cheeks and his lips were puffy. It was about then I knew this was going to be bad....

Well unfortunately we have landed ourselves back in the hospital. Ethan started vomiting last night which continued through until the morning. By 7am his fever was spiking up over our 101 threshold. So we went into the clinic at 9am. They drew a bunch of cultures and gave him IV fluids and anti-nausea medicine. His fever didn’t improve so they decided to admit him to the hospital and start a strong antibiotic. He slept most of the day. It was odd to see him so still… I hadn’t seen him like that since our first hospital stay. We finally got a room at 5pm and since then he has perked up quite a bit. Right now he is playing Angry Birds Space and munching on dinner. We will be here at least until the 24 hour cultures come back and he stays fever...

I thought it was about time to write out the events that led to Ethan’s diagnosis. Leukemia is a sneaky cancer. It comes on fast and can be fatal within weeks if not diagnosed and treated. Luckily we managed to catch Ethan’s cancer before it got out of hand. Many of his symptoms we remembered retrospectively after knowing more details about leukemia. During the month of January we noticed Ethan was pretty lethargic. We homeschool and he was pretty hard to motivate. He kept lying down on the floor and couch during lessons. He was pale even in his lips. My dad noticed that his bruises were different, more reddish than purple and long lasting. On January 21st we took him in to the walk in clinic because the lymph nodes in his neck were extremely large, so...