By way of an update on Hayden's progress, the short version is that we've completed the second round of steroids (dex), spent 2 nights in the hospital, and he's neutropenic. And now (if you care to read on), the long version...
Hayden's chemo treatments became easier when we started giving him anti-nausea meds in the a.m. but either those drugs, the dex, or the combination made him very tired so most of that week passed in a fog for him. On the weekend, we made our first trip of the summer to Nutimik. Hayden's mood was less than jolly but he wanted to go and he's typically very active there so we thought it would be a good idea. We were getting a little worried about constipation (a common side-effect of his meds and a big problem during the first treatment phase) so we were trying to keep him active and hydrated. Unfortunately, the dex brought him down and he did not enjoy his lake experience. For me, this is the most difficult thing to deal with because it's so unlike him to be...I don't even know how to describe it....maybe sad...even resigned. So we came home early on Sunday and nothing really brought him out of his slump.
I worked from home on Monday so we went out for a walk to try to get things moving - no luck. The constipation was not helped by the fact that his favourite snack includes cheese. Right now his big thing is Rosemary & Olive Oil Triscuits, grated old cheddar cheese, and Vlasik pickles...also dill pickle popcorn....and ribs....and rice....chicken....and the list goes on.
By around 3:30 or 4:00 on Monday, he started complaining about back pain so we hit the streets again for another walk (thinking that constipation and laying around are causing the discomfort). The pain in his lower back quickly escalated so we phoned the on-call pediatric oncologist at the Children's Hospital. He feared an appendix problem or kidney stones so we raced to the hospital. By this time, Hayden was screaming in pain...and pretty much kept it up until the mophine was administered through his Iron Man port in the ER. They did blood work, a urine test, and (most importantly) an x-ray...turned out, he was full of poop...packed!
After several hours in the negative pressure room in the ER, we were admitted back into CK5. The next day and all of the following night were all about the laxatives (tastes bad!), hydration (means an IV pole), trips to the can (self explanatory), and soaking in a hot bath (soothes his sore little bottom). Despite very little sleep and a lot of discomfort, he was a real champ. Unbelievable really.
Hayden came home on Wednesday to a big surprise. As we pulled in the driveway, Grandpa Bennett, who is visiting from BC, walked out to meet us in the driveway. Hayden looked and said, "Hey, that guy looks like Grandpa!". It certainly did...was...and he was really happy.
He went to school on Thursday and Friday but we know from blood tests at the hospital that he's neutropenic (low on infection-fighting blood cells) so we're limiting his outings again. As soon as he's able, wants to see Transformers. His last day of school is Tuesday but he has appointments so Monday may mark the end of grade 2. It's been a crazy year (slight understatement) but despite the many days that he missed, he managed to keep up - both in terms of learning and friends. He's fortunate to have great classmates and teachers - all of the people at the school (principal, vice principal, office staff) are wonderful.
So we're done the dex and just waiting for his counts to rise again before we continue the Delayed Intensification chemo treatements. It's unlikely that he'll be ready to go for his next appointment on Tuesday, but we'll see. He said this morning that he feels like a normal kid again - like he doesn't have cancer anymore. That's probably because the we're done with the dex (hopefully for good!) but it's great to hear after what we just went through.
From a while back, here are some pics of Hayden at the finish line with Auntie Nadeen and cousin Chandler at the Walk for Life. A big thank you to Nadeen for supporting cancer research (raised more than $2k!) and everyone who walked, volunteered, and donated.
And finally, here's our moon-faced boy - he's still puffed up from the dex. Did I mention that his hair is falling out again? No matter...we already know that he's a good-lookin' bald dude.
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