The Roller Coaster

It's been a while since I last updated the blog.  It's not been for lack of effort.  At least three times I have started drafts of entries, putting a few hundred words down only to have circumstances completely change before the entries could be proofread let alone published.  We've been on an emotional roller coaster of epic proportions recently.

On the medical front everything has been going pretty much as expected. Aidan has been doing well and tolerating the chemotherapy with limited side effects.  His counts have fallen and risen and fallen again, but he's generally felt decent throughout the process. 

Monday night Aidan's hemoglobin levels had fallen well into the critical range and we had to get ourselves to the Clinic bright and early Tuesday morning for a blood transfusion.  We were sufficiently scared having never gone through that before, but it couldn't have gone smoother.  We were there quite a while as two bags of packed red blood cells dripped into his picc line, but  The effects were almost immediate.  Within an hour or so color had returned to his cheeks and by the time both units of blood had infused he felt fantastic and looked healthier than he had in weeks.

We were worried that this unexpected transfusion would delay our scheduled inpatient stay for 5 straight days of chemotherapy, but his ANC and platelet levels were both very good so there was no need to go off schedule.

Aidan came back to the hospital Wednesday into the same day surgery department and had his picc line removed, mediport installed, and his first of five doses of Chemotherapy. He's pretty sore today and having trouble moving around, getting in and out of bed etc. but otherwise is none the worse for wear.  He's actually been declining pain medications so it's either not all that bad or he's starting to toughen up a bit. Inside our little cancer bubble we are doing pretty good.  

It's everything outside his diagnosis and treatment that we are struggling to manage. Dealing with Aidan's diagnosis and treatment is pretty much a full time job. Even discounting all the logistics and case management that Jamie has to do to keep his appointments, medications, schooling, nurse visits,  we have to monitor him closely to stay on top of possible side effects of his treatment to make sure his symptoms aren't indicative of something worse than just "to be expected" side effects.  We have to work at keeping his spirits up as best we can.  When our world outside of Aidan's diagnosis chugs along quietly as if on auto pilot, we can more or less manage it all effectively.  This hasn't been the case the last several weeks.

I have been busier at work than I have been in a really long time and I can't seem to get myself ahead.  Just when it appears that I am getting a firm grasp on everything, 3 more projects land in my lap and I'm immediately behind again.  I now have server upgrade projects that are going to require travel and I honestly have no idea how I'm going to pull that off with Aidan's schedule of hospital stays and the prospect of leaving Jamie by herself for a few days at a time.  I am definitely thankful to not only have a job, but work for a company that has been so accommodating with me in the face of this diagnosis and supportive of Aidan and his journey, but it doesn't change the fact that I've felt like I'm just barely able to tread water at work the last few weeks.

Jamie also is doing her best to stay ahead of her work as well, but the schedule of treatments and hospitalizations as well as being home with two boys (one who has cancer and another who you can tell feels a bit slighted with his brother receiving so much attention) and just trying to keep our household running make it difficult to find time to sit down and work on photos.  I honestly don't know how she does it at all, but she is still somehow managing to turn out beautiful work albeit a bit slower than she normally does.  Thankfully her clients have been understanding of our situation, but I know it still bothers Jamie that she is not able to get things done for them as quickly as she is used to and expected to.

Lots of other seemingly small things have gone wrong or at the very least were more complicated to deal with than they should have been.  Normally when that happens it's just a minor irritant, something that just slightly derails an otherwise fine day.  We are already constantly on edge though so when the car breaks down and requires minor service, for example, it seems completely impossible to deal with.

Then our family hit a breaking point.  We thought for a couple of days that we might lose Champ.  He fell ill and was vomiting all over the house.  Our vet (who won't be our vet much longer) recommended we withhold all food and water for 18 hours but gave him an otherwise clean bill of health upon exam. We followed Drs orders but as soon as he was eating again almost a full day later he was still throwing up. When he tried to rest on the couch his entire body shivered as if he were out in the cold without the sweaters Jamie sometimes makes him wear.

Jamie took him to the emergency vet who did an X-ray and suspected he had some sort of obstruction in his GI tract.  The options given were to be transferred to a different vet hospital that had more advanced equipment (ultrasound capabilities) do exploratory surgery on the spot, or euthanize him.

We've only had Champ for around 11 months but he truly is the glue holding our family together right now.  Knowingly or unknowingly, he gives each and every one of us exactly what we need to help us get through this.  He offers himself as a jungle gym for Dylan allowing himself to be stood on and tackled by our rambunctious 4 year old.  For Aidan he is the ultimate therapy dog, laying at the foot of his bed at night or on the couch with his head in Aidan's lap.  He's my running partner and even though I go slower with him than when I run solo, I enjoy my runs with champ much more than the ones he misses.  At night and in the mornings he is the snuggling bear that Jamie needs.  He is perfectly content to have her arms wrapped tightly around him for as long as she wants to snuggle him.  He is the absolute perfect dog for us and is part of the family. To be faced with the thought of losing him when he is still so young and vital was too much to bear.  I mean I'm certainly not Ernest Hemingway, but even I can spot that metaphor.

We opted to send him to Pittsburgh Vetinary Speciality and Emergency Center where they had an ultrasound machine and could get a better look at was what going on inside him.  We decided that there are things far more important in this life than money. We were going to do what it took to keep our family whole. They admitted him and immediately started getting him hydrated via an IV drip.  They kept him overnight and did an ultrasound the following morning and things looked better than they expected.  A repeat of the X-ray showed a big improvement and it looked like whatever was causing him such great distress had finally started moving.

A couple of days later, after a sizable vet bill, and a large chunk of raw carrot was removed from him during a procedure to get a stool sample, Champ was back home where he belonged.  He was seemingly a bit miffed that he was on a bland diet which included an insanely expensive small bag of dog food that apparently tasted awful.  He was also not terribly thrilled that we had voided his tickets for the table scrap train that he takes daily commutes on.  Joking aside, he was as happy to be home as we were to have him home, and as odd and silly as this may sound, getting through this medical ordeal with Champ made us more optimistic about the cancer battle our family is fighting.

We received a book when we were diagnosed called "Living With Cancer"  I didn't think much of it at the time, but almost two months into our battle, I'm struck by just how appropriate that simple title is.  This diagnosis is omnipresent and affects every single aspect of our lives.  Our Drs told us when we received our diagnosis that we'd get used to a "new normal." We definitely have a better understanding of what they meant, but we're not used to it yet. Perhaps as we get further along in our journey all this stuff will become easier, but right now we're just trying to keep our hands, arms, and legs inside the car.