April 2, 2012

SD began the Delayed Intensification phase last Thursday. As the name indicates, treatment has been stepped up; already, struggles and emotions that we faced back at Induction have returned, but so far not to the same level. Most of this is caused by SD's resuming a twice daily dose of steroids. We thought that if the drugs affected his personality this time, it probably would take about a week; unfortunately, it started after two doses. The steroids hit him hard last time and he is taking nearly twice the dose that he was taking before; it seems that his body well remembers this medication. So far he is still self-mobile, but from the day after he took the first dose he has had a fear of falling and wants to be held or carried most of the time.

He also started a new drug last Thursday called Doxorubicin, which is a bright red. Up to this point, he has managed to hang on to some of his hair, but it sounds like this medication will most likely take what's left. He will receive two more doses of the Doxo this month.

SD went back to the Clinic today for the first of two spinal taps during the month of April. While he was sedated for the spinal, he also received a PEG shot in each thigh. He had PEG shots a few days after his diagnosis, so we know how advantageous for everyone - especially SD! - having it scheduled on a sedation day was. He will still be sore from it, but he didn't have to go through feeling the medication enter his muscles. SD was pretty wiped out by the time we got home!

We will be heading back to Grand Rapids for the third time in a week on Thursday for Doxo and Vincristine. It will be the last day of the first pulse of steroids! SD will then take seven days off before the second pulse starts.

We're still getting used to lots of medications again! For quite a while SD only had to take Fluconazole at home; pictured below are his evening medications from last Thursday: Prevacid (to prevent stomach upset), Fluconazole (to prevent fungal/yeast infections), Zofran (to prevent nausea), and Decadron (a chemotherapeutic steroid).

Barring delays, which are actually pretty likely since some of these medications will lower his counts, SD will have a Big Day at Clinic on the 26th. SD will receive a spinal tap and three new medications, one of which requires thorough hydration after no eating or drinking past midnight the night before. We expect to be there all day. One of the medications beginning that day will need to be administered at home via SD's port. The thought makes us rather nervous, but we began training for it today. Mandy prepped and flushed SD's line with a saline solution, removed the window and tape that covered the butterfly needle (ouch!), and pulled the needle out. Nurse Mary told us that deaccessing the port is the hardest and most nervewracking part of what we'll have to do. Since one of us has done it now and we still have a few more chances to practice before doing it by ourselves, we already feel more confident.

Delayed Intensification is a two month phase, but since delays are expected, we've only received a (tentative) schedule for this month. Because of lowered blood counts, we'll be mostly keeping SD at home, apart from taking him to his appointments. Our main prayer for the next two months is that he'll be able to avoid infections, thereby avoiding further delays.