It's Not Fair

Yes, I know...life isn't fair. But why does cancer have to hit so hard below the belt?

One of the boys that we met at Camp Agape in 2009 is loosing his battle with his third recurrence of Ewings Sarcoma - a vicious cancer. In the middle of fighting those battles, he also fought (and won!) a battle with AML (a leukemia brought on my the treatment for Ewings).

His battle has been fierce, starting at age 3. Now at age 9, his parents have just signed the paperwork for Hospice care. The agony in their hearts is palpable through the computer monitor, as I read their words with a face drenched in tears.

I do not know their family well, gleaning most of my familiarity through their heart-felt words in his CaringBridge website. But, our hearts are connected through the love of our children, and the terror of fighting the wretched disease.

This heartbreaking update to Gage's condition comes in the same week as news of another amazing kid from our 2009 Camp Agape trip, suffered a relapse himself. I'm sure his family is gearing up for their next cancer battle.

My heart is breaking for both Gage and Josh's families.

As we near the end of Alex's active treatment, I am reminded that we will never fully escape cancer's grasp. The fear of relapse will always be in this mother's heart. I can push it down, I can shove it to the side, but I will never be rid of it.

Ever.

Quick Update

Alex had his Chemo appointment today. His ANC was 2,000 - which is too high!

So, they are upping his Methotrexate and will re-check in two weeks. If his counts can handle the increase in Methotrexate, they will attempt to bump up the dreaded Mercaptapurine dose too.

The roller coaster isn't over yet! I fear I hear the "click click click" as we climb the hill for another run...

Onward...

Another Visit and a Realization

We went back up the hill to get Alex's counts checked again last Wednesday. The ANC was 1,100 - which is right where they want it. There was some talk about possibly adjusting the chemo again in two weeks, if his counts creep up.

This is the stressful part for me, because it's more of a guessing game at this point. I was very comfortable when there was a dosage plan, and everything fell right in line with the protocol (you know, the one with the 80-90% cure rate...). Now, things are more fluid - and while I hate poisoning Alex every night - we know we are doing it in order to reach that cure. While I get it that we have to play with the chemo dosage to find the best fit, I'm terrified that we aren't hitting the cancer cells hard enough... The Oncology mantra in this day in age is "poison them to the brink of death - then pull them back".

I attended a talk by an Oncology doctor, who works closely with Alex's main doctors. He told me something that I hadn't really realized before...

Every day, everyone creates cancer cells, and every day, most people's bodies seek and destroy those cells. Alex's body didn't recognize these cancer cells, and they were left to multiply - doubling every 24 to 48 hours. So the really scary part is that, while I am confident that we will beat the hell out of these cancer cells, what happens if his body makes these cells again sometime in his lifetime?

I came to realize that cancer is truly an autoimmune problem. Alex's body doesn't know to fight off these cells - although it fights off other enemies all the time (bacterial and viral infections to name a few). I was encouraged to hear about all the research to teach our bodies how to recognize the cancer as a threat, and destroy it. Right now, we obliterate the immune system in the effort to kill the cancer - sacrificing the one thing that might be the answer to curing cancer.

It's hard to wrap my head around this - and I'm glad that we have so many dedicated doctors and researchers working for a cure.

Wouldn't it be amazing if Alex's generation was the very last one to use poison to combat the disease????

Crazy Counts

Yesterday, we had Alex's clinic appointment for Vincristine, and to check his counts. His ANC was only 600 - which is 150 below where they want them.

Good grief - we just can't seem to get the exact "mix" of chemo he needs...

In the meantime, it's lots of hand washing, and trying to keep him away from anyone who is sick (yah, right...)

So, the plan is to continue ahead with Steroids this week, and then check counts again in two weeks. From there, the doctors will determine whether to adjust his dosage again or "stay the course".

Speaking (or typing) of Steroids, they have hit hard in this house already. Only 4 more days to go...

We can do it - right?

Steroids and Sleep

Alex is on the lovely steroids this week. He is grazing all day in the pantry and refrigerator. I'm so glad that he likes fruits and vegetables, because this kid is eating non-stop! Cheese stick, after cheese stick...then on to peaches, and plums, carrots, crackers, left-over fried chicken, apple sauce, yogurt, fish sticks, scalloped potatoes, spinach, cheerios, raisins, peanut butter, juice, water... you get the idea.

He was so excited to go play with friends today, and then promptly fell asleep in the car before we got to our destination. I carried him inside to the couch, and he slept from 1:30 to 4pm. I think his counts are crashing down from the height of his fever. I hope they only come down to the "acceptable" range of 750 - 1,500.

We aren't scheduled to go back into clinic until the end of July - so I've got all fingers and toes crossed that he stays fever-free between now and then. We dodged one hospital admission bullet - I doubt we would be that lucky twice...