Tumor Shedding Gets Us Hot

Jo Ann wrote this post yesterday. Pablo was fine when she started it. By the time she finished it, Pablo was back in feverland. So, we kind of made this post a log of the past 15 hours in our lives.

There is a theory we've heard from the docs and nurses that 'tumor shedding' (how great is that term???) has all kinds of side effects, including fever and other things I don't want to write about here. We'll focus on the fever part for now. And, can I just say that the idea of the chemo burning Pablo's tumors to bits gets us all hot. He's not the only one up in here who's burnin' up over this!

We call this kind of post a 'Life During Wartime'–one minute life is normal, sunny, calm and you're writing from that perspective; the next, cancer-fever-tumor bombs are blowin' up all over the shop, and yer writin' on the run.

OK, here it is:

Tuesday night we are back where we were three weeks ago–wow! Was it really that long ago when we visited the ER and the Oncology clinic three days in a row? I would love to say that it's not as scary this time. But to be honest, when I saw the digital thermometer blinking RED and displaying 102 degrees, my heart started racing and my breathing felt constricted instantly. I retook Pablo's temperature three times, thinking somehow, magically, it would drop 2.5 degrees and we could just get ready for bed.

I knew that we would have to go into the ER, and I started preparing us for our evening there. Francine assisted with the numbing cream for Pablo's port-a-cath, and then got our hungry boy some fruit, which is all that he was interested in eating. I packed our bag with the books and blanket that Pablo requested. Jeff wrote a quick blog post documenting our moves to CHLA, and got Pablo into the car.

We took three cars to the hospital–crazy, but Francine would be going straight home from there, and I had to go pick up our big boy at the airport (which was something that I was looking forward to for, hmmm, nine days!).

We have the ER/Triage thing down to a science. I go in with Pablo, all of the necessary forms of ID in hand and register (under five minutes). Get Pablo's bracelet and get into Triage. All the vitals are taken there (again, under five mins) and we are on our way to an exam room. I call down the hall for Papa (and, in this case, Franny), and off we goooooo.

Things were moving along nicely and we all felt good, knowing that Pablo would need to have blood drawn and antibiotics administered through his port. For the past few weeks, we have managed to access the port with NO pain. So I headed out to LAX to get our Grady. Along the way, I called in to see how things were progressing, to find out that there was some sort of a situation happening, but that all was being taken care of. This sucks! I'm a total control freak. Not being there was driving me nuts. The nurse asked what size needle to use (THE SMALLEST, HELLO!) and everyone in the room knew that this was not going to go smoothly.

This is what the author Gavin de Becker refers to as THE GIFT. His books 'The Gift of Fear' and 'Protecting the Gift' are the only two parenting books that I recommend to people–and they're not even "parenting books." What happened in the ER last night, was us not protecting the gift. This is the thing: we live and learn. Just when I think I've got all the answers to all the possible questions that are going to come up, because my binder is super organized with beautifully labeled tabs, some nurse throws a curve ball and asks what size needle your child takes in his port.

I ordered three copies of 'Protecting the Gift' today (I lent mine to someone long ago). I am looking forward to positive reminders that MY INSTINCTS are my gift and they are always correct. When a nurse vibes me out, she's not touching my kid. Period.

Yesterday, things seemed to be better. Pablo slept in until 11:30 a.m. and felt great for a few hours. Around 3:45 p.m., he started with a low grade fever. We called it in and the oncology nurse at the clinic told us that they don't take any patients in the clinic after 3 p.m. and that we would need to go to the ER again. Based on how all of this went down last time, I asked if we could stay home and give him Tylenol, and come into Urgent Care in the morning. She admitted that she could not make that call and I asked to speak to our doctor. He was not available until 5 p.m., so we waited at home and had dinner.

The nurse called back and let us know that Dr. Mascarenhas said that we could, in fact, stay home this evening, keeping a close eye on our little guy. The order was to give him Tylenol every four hours throughout the night based on his temp, and bring him back this morning, when they may or may not give him another round of antibiotics.

At around 10:30, Dr. M emailed us (how great is that?) and gave us further instruction on what to look for throughout the night. Two indicators to bring him to the ER: looking ill and having chills. (When we get through this, Pablo will have a license to ill.)

We made it through the night with no probs, although our young charge was cooking like a Wisconsin sausage all night. We're getting it together to go to the hospital (by way of Intelligentsia Coffee) for another fun run. They will be taking lots of blood, testing it every which way, to determine if P's white blood cell counts are in line, and whether he has an infection in his blood.

So, here we are, walking out the door, headed to CHLA a.g.a.i.n. We were told this game was a marathon, not a sprint, so today, Thursday 19 June 2008 in Silverlake, there's no better date and and place and time to get ILL!

Have we mentioned that CHLA has valet parking?