Sabbath, January 21, 2012

On Monday when we went to the clinic, Derek’s ANC had risen to 600.  That is still low, but it was high enough that I was quite sure that by the end of the week he would begin phase 3 called Interim Maintenance.  They wanted to admit him Wednesday evening so they could hydrate him and give him a bone marrow and spinal chemo Thursday morning before giving him the high-dose methotrexate.  The high-dose methotrexate is part of the experimental drug protocol he is on as part of the study.  It is the second “big gun” that is pointed at him.

Wednesday when we went to the clinic to check his ANC, we were fully prepared to head to the hospital following the clinic visit.  It felt very strange planning a hospital stay, knowing it was going to happen.  The house was even clean and the laundry done. I was ready.

Back before Christmas when we were in the hospital, Derek and Vince were in the playroom when a generous donor who calls himself the “Toy Fairy” called to ask if there was anything in particular he could get for the cancer unit playroom.  The girl in charge of the playroom turned to Derek and asked if there was any toy he particularly wanted.  We avoid the video games and television that entertain so many kids, and Derek had about played himself out with most of the other toys, so it was really nice of them to ask Derek for his advice.  Vince and Derek suggested getting some Snap Circuits. We have a set at home that my family gave him a couple years ago, and he loves following the directions to make something electronic or designing something of his own. It allows for a lot of creativity while learning about electrical circuits, electronic parts, and what they do.  Just after Christmas, we heard at the clinic that they had received three sets from the “Toy Fairy” and that everyone at the hospital playroom was really enjoying them.  They thanked Derek for suggesting a great toy.  Now Derek was excited to see what they got and filled with anticipation of something new and interesting to play with at the hospital.  He was ready to go.

Derek’s ANC was 1600, well over the 750 required to start the next chemo round.  But there was one hitch: there were no beds available on the unit.  They sent us home.  It was almost a let-down. I could hear disappointment in Derek’s voice. It was almost as if we were expecting a baby on a particular day, and it didn’t arrive. (That is another story from when Derek was born.) Both kids were a bit fussy that evening. I could understand, because even I felt a little letdown.  Even though I have reservations about the next phase, I know it has to happen, and I guess I was ready to get it over with.  They said that after rounds Thursday afternoon, they would know whether there would be a bed on Thursday. 

All day Thursday we waited for the phone call.  Finally at 3:30, I called them.  Yes there would be a room, but the child had to be discharged (which is a lengthy process,) and the room needed to be cleaned.  They would call when they had a time it would be available.  At 6 p.m. I still hadn’t heard from them and called again. The unit secretary said they were cleaning it right then and told me to come.   I fed the kids a quick supper and got in the car.  When we arrived at the hospital, the room was still not ready. We waited.  Finally at 7:30 we were able to settle into his room.

Friday morning, Derek was sedated for a bone marrow sample and a spinal with intrathecal chemo.  Then a few hours later they gave him the VinCRIstine and started the high-dose methotrexate.  They hung a large bag of the chemo that will drip into his veins over the next 24 hours.  Because the medication is sensitive to light and will take so long to administer, it is covered with a brown plastic bag, and the nurse covered the IV lines with tape.

Derek was very active and energetic yesterday afternoon. He did not want to settle down and sit anywhere, especially in his bed. We got one of the Snap Circuit sets from the playroom. Derek was very happy to find it is a much bigger set than the one we have. He happily made a siren using instructions and then designed a fan on his own using a meter to compare one battery pack to two.  He also made a music player that played “Happy Birthday.” 

So far, he has had few side effects that we can tell.  His appetite has dropped and he feels some nausea, but that is all so far.  Once the medication is in his system, they will have to use another medication called leucovorin to rescue the healthy cells. This medication has to be administered at precise times following the chemo.  We will be able to leave the hospital when blood and urine samples show the methotrexate is out of his system.  Possible side effects besides nausea include mouth sores, vomiting, and diarrhea. He will repeat this cycle approximately every two weeks for a total of four treatments.

Thank you for your prayers on Derek’s behalf as he begins this next two-month phase of treatment.