Controlled Chaos

That title says it all. We had a crazy weekend with a toddler who did not want to eat or drink and would throw up after meals (despite giving his nausea meds on a regular schedule). Not even chocolate milk would entice him. Which granted us a one way ticket to the ER for fluids and Zofran.Thankfully the fluids and time seemed to take the nausea down a notch and he is back to eating everything in sight. Whew.

We've had multiple things happen during Alex's treatment that have been very real blessings. We've had moms bring us supper on chemo nights, a HUGE care package full of snacks, coloring books and such for Alex, toys, etc. Robert called me earlier this week and said that someone had donated 200 hours of shared leave to him. This was on top of the 160 he was donated last week that we had planned on using for doctor's appointments, hospitalizations, etc. That 200 hour donation means that Robert can take days off and stay home with lil man while his counts are really low (otherwise it was going to be LOTS of working from home time for me-and I'll still work from home some). 

Robert and Alex went to the park after work yesterday. I think Alex had a good time. :)

I was flipping through the links for the 10 Strong team who is raising money here in OKC for St. Baldrick's Foundation by shaving their heads their coming Sunday and came across this guest blogger series. Vanessa is part of the 10 Strong team and is the guest blogger. She talks about her sons journey (he's cancer free now). http://liferearranged.com/category/childhood-cancer/ I'll let you read the series, there are two entries out of four out right now. But reading the second one, she totally hit the nail on the head. Seeing the first bald spot on my lil man's head made it absolutely real. His hair is down to a soft downy fuzz all over his head.

Round Four

Alex's counts were WAY up on Friday. When his bone marrow kicked back in, it kicked back in big time. So we had round four of his chemo-which was another "big" round with all 3 drugs. Not sure if it's teething (I know he's cutting his lower left 2nd year molar) or chemo side effects, but the evenings have been a mess. He wouldn't go to sleep Friday night, didn't want to take his meds, and was crying A LOT. I knew it wasn't anything too serious because Robert could make him laugh by being silly (YAY for Daddy!). About 9:45 we'd just had enough and I suggested a car ride. Worked like a charm. 

Saturday morning he was happy enough that I got out to go meet a friend for a mani/pedi and to eat lunch. Felt really good to have some "me" time. Now I just have to find a way to kick Robert out for some time for himself. Between work and school, he doesn't have much spare time to begin with. So when you add on a cranky toddler that takes 2 parents to juggle, life gets really interesting.

I'm going to attempt to go into the office tomorrow. I spent two hours there today and felt like I got a good chunk done, but it's never enough when you've been out for a week! I was working from home, but there are the inevitable bits and pieces that just require me to be there in person. We'll see how Alex does. I may just work half a day in the office and do the rest of the day here at home.

First hospital stay

Alex received round 3 last Friday. His AGC (aka ANC-measures the bacteria fighting cells in the blood) was down to 164, but they give vincristine no matter what the count since it doesn't really affect blood counts. A "normal" AGC is over 3000, the danger zone starts at under 1000 and 500 is really prone to infection.

Alex spiked a fever on me around 2 that afternoon, so after a call to the oncology clinic we were off for the ER. His count was up a little in the ER, but still under 500 so he was admitted. Talking to the doctor on Saturday the criteria for being released was no fever and his AGC starting to recover. His count Saturday morning was 50. Sunday's count was 990 (I think it was an error in reading the smear), but he had had a fever early that morning, so we were stuck. Numbers were back down Monday and finally came up Tuesday. The roughest part is that lil man was on a 5 foot tether more or less in terms of IV tubing and kept getting tangled. I did talk the attending into letting him off fluids during the day Monday and that made life easier.

Our stroller was a lifesaver. We'd load Alex up and take off for rides around the floor. I even took him down to my office one evening while he slept in the stroller and got an hour's worth of work done.

Robert was recently accepted into the Engineer in Training program at work. He missed the first two days of his new rotation at work, but they moved stuff around and basically left him where he'd been before so he could have a full week in a new location next week. Thankfully both of our jobs have been working with us as much as possible during this rough time.

We're back home, thank goodness. Robert is at work today and I'm working from the house. Alex has been playing all morning.

We know we'll have a surgery at some point, so I plan on taking the computer with me next time so we can keep folks updated better.

Terri

Round two

Alex had round 2 of his chemo yesterday. It was one of his vincristine only weeks, so we spent more time waiting than anything. We went in for his finger stick for his blood count and then had the vitals done and then back to the waiting room for a short wait until the CBC was done and the nurse was ready to give his chemo. Giving the chemo took less than 5 minutes total this week, so thank goodness for that.

Lil man was bit more tired than usual yesterday. He napped on the way home from the hospital and then passed out for an hour plus in my arms yesterday afternoon.One of the mom's from daycare made supper for us, so at least I didn't have to cook last night-thank you, thank you, thank you. Not having to cook after a day that involves the doctor's office is a blessing!

Midweek update

So we survived the great "non-blizzard" here in central Oklahoma. Friends to the west got a full-on blizzard but we got rain, a little sleet, and snow that pretty much melted on contact. Doesn't matter, we needed the moisture!

I've had lots of folks asking how Alex is doing. So far so good. He is still running around like the madman that he is and eating like a horse (which is normal for him). But I've also talked to a friend who started out as an oncology nurse and she said that most times the first dose isn't known for causing a lot of side effects. And as time goes on, I know it's going to get tougher on the little guy.

G'nite!

The First Chemo

Today was probably a day that will stick with me for the rest of my life. A friend and fellow WAGR mom put it best (sorry Kelly, I'm ripping your words off): "It's a huge milestone... but there's no page in the baby book for "Baby's First Chemo" :-0 Your heart breaks at the thought of deliberately putting poisons into your child's little body...and at the same time you feel intensely grateful, knowing these drugs will destroy the cancer."

Alex did very well all things considered today. The hardest part was making him hold still for 20 minutes while his doxorubicin went in-to say he was ticked off would be an understatement! They pre-medicated him with an anti-nausea med and he's been eating pretty much normally today. We'll start giving oral nausea meds tonight.

The Last of the Baseline Tests

I was awakened at 5:30 by a HUGE clap of thunder followed by the sound of sleeting hitting the windows. The local schools were closed, the University where I work was delayed opening by 2 hours, but lil man was scheduled today for his EKG, echocardiogram, and MRI as part of the baseline tests before he starts chemo. Enter SuperDad to the rescue (actually it was a matter of I just asked Robert to drive us so I didn't have to drive in it).

The oncologist wanted to get a baseline MRI so Alex could be followed with MRIs instead of CTs and significantly cut his radiation exposure. I was all set and ready for a really long day as his MRI was scheduled for 3:30. Children's does MRIs for the kids under sedation so they can get a good study. Honestly, if I knew I was going to have an hour long study where I had to hold perfectly still, I think I would want to be out! Anesthesia meant no food after 5 AM (so really, last night) and we could have clear liquids until 11 AM. I was not looking forward to this. To say I was happy when MRI called right as we were getting ready to leave and asked if we would like to come in earlier (they'd had cancellations) would be an understatement. I believe my comment to the lady was "Oh thank God!".  So instead of hanging around waiting until 1 PM to check in for his MRI, we were instructed to come straight down from his echo/EKG and check in.

The echo and EKG went just fine. Alex's port is right over the "best" window for seeing part of his heart, but the tech worked around it. For his MRI, they give laughing gas to put the kids to sleep before they start the IV. The anesthesiologist explained that she does not like using the port since it is a central line and the risk of infection is higher (and he really needs it for the chemotherapy). Robert arrived on his lunch break just in time to carry Alex back to the scan. Total scan time was 1.5 hours and it took lil man about 30 minutes to wake up enough to be discharged afterwards. He devoured FOUR graham crackers in recovery and was double fisting it on the way out with two more.

We start chemo tomorrow with a check in time of 9:30. My supervisor and section chief have basically informed me that if I need to work at home/in the evenings/on weekends to do whatever I need to do. My section chief is really concerned that Alex won't tolerate being in daycare while on chemo. So the plan is to just play it by ear right now. I will say that the lady who keeps Alex is pretty darned awesome and already has someone to temporarily fill the Friday's he is gone while on chemo. That savings of one day a week is going to add up big time over the course of this treatment and we'll take every bit of savings we can.

No promises on an update tomorrow. It will all depend on how Alex reacts to the chemo.

Terri