The DI roller coaster

Extremes of a dexamaniac:

From cuddly teddy bear to wet cat
From barth bucket to feed bag
From silent tears to wise-cracking prankster

Hayden started his Delayed Intensification (DI) treatment phase last Wednesday. This is big one - he received methotrexate by spinal injection while he was sleeping, and vincristine and doxorubicin through his Iron Man port. Plus, he started a 7-day run of steroids, called dexamethosone (aka dex), taken orally twice a day. Quite the cocktail...but he seemed unphased by it and even went to school in the afternoon. The next day though, he was feeling barthy, emotional, and tired. He tried to go to school…actually made it into the classroom but we immediately returned home. On Friday, he made it through most of the morning before heading to the office, where he napped while waiting to be picked up. By the evening we could see a dark cloud settling over his mood, which was right on time - we expected it about 3 days after the dex started. We told him that it would happen and that it would pass but the anger or sadness is so intense that he was confused by it (think PMS x 10). At least, though, it pretty much coincides with the end of the tummy pains and barthiness (I think he may have this word added to the dictionary).

So Saturday was tough. We went to the fishing derby put on by Kids Fishing for a Cure. It's an awesome event and we had the best captain (Rory) and co-captain (Carlos). The real Hayden would have loved it...but the dexamaniac Hayden...well...he was less than impressed. Rory and Carlos did their very best to make the day special for Hayden. He caught two fish but just couldn't buck up. He started quietly crying and wouldn't talk so we went back to shore after about 30 minutes. He later confided that he didn't want to say anything for fear that it would be mean. He napped, then woke up as the real Hayden...just in time to collect the very first trophy for the biggest bass. Yeah!!!! A mere 5 cm short of a master angler Silver Bass.

Then he started to eat and eat and eat. After 3 days of almost no calories our skinny little boy strapped on the feedbag on Sunday. Plus his spirits lifted and he's now very polite and affectionate (whew!).

Today is Monday and his appetite is still going strong but we often find that it's mis-guided. Hayden will beg for (OK demand) a certain food only to find that it's not at all what he wants when we put it in front of him. We, however, are not dex newbies so it really doesn't phase us.

He was back at the clinic today for asparaganese (peg) injections into his thighs. He was very anxious about it but, as always, the actual needles are not as bad as the thought of it. Regardless, we rented Goosebump movies as a treat (these are usually reserved for hospital stays).

Tomorrow is another clinic day...more chemo and a blood test. Next weekend is camp, which is organized through the kid's CancerCare Clinic. It's Hayden's first trip away from family and, while he's fine with it, I'm just not ready. But cousin Chandler will be with him and I'm sure they will have a blast. I'm still considering the chamo gear so I can hide out in the woods and watch over them (that's not creepy, is it?).

We're nearly a week into the 2-month DI treatment phase. So far, it's not too bad. Sorry for the long post but one more thing...thanks for following H's story and thanks for supporting cancer and Children's Hospital fundraisers. It's nice to know you're out there. Now go hug a kid.