Held

Tonight I’m tired. Cancer has taken my family hostage.
Anthony doesn’t have any new medical problems. But everything possible went wrong today, except (thank heaven!) for severe weather problems like tornadoes.

Today was Anthony’s appointment for chemo in Seattle. He has these every 4 weeks, like clockwork.
After being deprived of regular sleep for several weeks now (due to hospitalizations and round-the-clock IV antibiotics), I opted to take the train to Seattle and back home so I wouldn’t be driving so tired. This way I could also do Anthony’s medications on the train and not have to stop somewhere and do them in the car.

The train to Seattle started out being late. Almost an hour late at only 5:30 in the morning is not calming to my anxieties of getting everything done on time.

We arrived in Seattle in good time though.
The ride I had arranged several days before wasn’t there. I called the service providing the ride, and they had no record of us needing a ride.
So they called us a cab. A cab with a car seat.
Harrowing drive in downtown Seattle and on the freeway. In the rain. Speeding, almost rear-ending many, sharply cutting in front of other vehicles. Harrowing.

Finally, we arrived at the hospital.
We were 5 minutes late, but the ultrasound for Anthony’s neck was still able to be done, and completely.

After the ultrasound, we needed to go get labs done, then we didn’t have another appointment scheduled for an hour and a half. So, there was some leeway time between appointments. I figured Anthony and I could get lunch and/or walk to the Ronald McDonald House for a few minutes.

We went straight to get labs done.
The most important labwork needed an actual drawing of blood from a vein, not his PICC line. So, a couple of A’s favorite nurses tried getting blood from his other arm (without the PICC) and both feet. Several times. The veins were hiding or just weren’t there.

All day yesterday, I had adjusted Anthony’s lovenox injection timing so that we could have a nurse help me hold him down when we arrived off the train. 2 hours late (remember that his body needs this medicine to be given at regular intervals), the nurse helped me inject the lovenox.

Next, we were sent to the BEST lab tech to see if he could get a good blood draw. He couldn’t even try because the time-sensitive labwork needs to be done 4 hours EXACTLY after the lovenox was injected.

So, we wheeled right around and went back to get regular labs drawn (minus the time-sensitive one) from the PICC line. Except the waiting room filled while we were at the lab. So, we got to wait an hour for that part.

While waiting, I got to see a fellow momcologist (moms who can almost qualify as oncologists because of the reality of living with a child with cancer). She was at clinic to participate in a Care Conference because her daughter is not doing well.

After labs were finally done, painlessly through the PICC, we got to wait 2 hours to get in to see dr. Appointments were running late for some reason. Other families were complaining because they’d been waiting 30 minutes. They didn’t have a train to catch, and we’d been waiting double the time they had.

We missed the train. Anthony did get to see the doctor, which is necessary in order to be given the Seattle chemo.

But, I wasn’t able to reschedule a surgical appt. next week. I don’t want to take an 8-hour trip for a 10 minute appt. The surgeon has to physically see how A’s incision has healed and is healing before a new port can be scheduled to be placed.

The next train home is tomorrow NIGHT. So, the hospital arranged for Anthony and I to stay at a hotel for tonight.

Because we’re still in Seattle, Anthony’s time-sensitive labs will have to be done before we can go home tomorrow. Then, we’ll have a driver take us all the way back home (3 hour drive). After having the taxi ride today, I’m not looking forward to that. But, the hospital drivers are wonderful, so maybe it won’t be so bad.

Arriving at the hotel, the room we were assigned had not been cleaned. So, we had to move to a different room.

And lastly, I read an update on a sweet baby who underwent what was to be a miraculous surgery on his heart. He didn’t make it. I am so sad for his family.

I don’t like to spread negativity, and always try to look at our situation with gratitude because we really do have things good, as far as cure rate for Anthony’s cancer, our circumstances, and support. I haven’t cried in front of our nurses or doctors before today.

Today there was no new diagnosis that we needed to learn to live with. It was just a frustrating day of everything going wrong.

I HATE cancer and how it has taken our family hostage. Even when we play by the rules, we still have no control over how things will go. Even for what is supposed to be a simple day of appointments. My family is separated for the night. Again.

I am looking forward to the miracle of what tomorrow can bring.