March 12, 2011

That is the estimated last day of Chemo for Alex - one month before his 6th birthday.

Now that we are in Maintenance, we can actually calculate his last Chemo day - so of course, that's what I did today.

More about his clinic appointment today a little later... I have to go finish cooking dinner.

Health Insurance Saved My Son's Life

No matter where you stand on Health *Insurance* reform, I have a simple message. My son was AT MOST two days from death when we took him to the emergency department before his cancer diagnosis. That visit cost us $250. The insurance paid over $1,500 for that visit. Since we don't have the negotiating power of an insurance company, we would have paid over $1,750 for that ED visit without insurance.

To be honest, I DID think about how much a Saturday night visit to the ED was going to cost us. Luckily, we had savings to cover the cost, so it was an easy decision that I would take him in to see about his "weird" breathing.

I am rocked to my core every single time I think, if we hadn't had the money for the ED visit co-pay or, that we hadn't had insurance at all, we may have given Alex some Benedryl on Saturday and Sunday night and sent him to bed. Chances are, Alex wouldn't have woken up Monday morning. While the cancer diagnosis was terrible, walking into a bedroom and discovering your child dead is a Hell I hope to never experience.

How many children die or suffer because their parents have to decide between a trip to the doctor, or paying rent that month? We've been told, "Oh, you live in Oregon, so even if you didn't have insurance, Alex would be covered". NOT TRUE. Eric and I make too much money to qualify for many social services, and NO ONE will insure Alex on a private plan with a cancer diagnosis. NO ONE. And, we make nowhere close to the amount of money needed to finance his two year cancer treatment without insurance (which is over $250,000 as of 7/31/09).

Why is our child any more "deserving" of a chance at a full life with the best cancer-treatments available than someone with little or no insurance? The answer is, he's not. He's lucky. We are lucky.

I'm not trying to start another debate on Health Insurance Reform - there is plenty of that. I'm just trying to give you all a personal story on the issue. I can't profess to know the answer to the best way to cover everyone. All I know is that we MUST. Not all children are as lucky as Alex.

Pills

Tonight Alex resisted taking his pills (chopped up in Mango Sorbet) to the point where Eric had to hold him down, and I had to squeeze his cheeks to open his mouth. This is going to be a looooonnnggg 18 months...

Blood Counts and Donation

Today, we had a really short appointment. The nurses checked Alex's Complete Blood Count (CBC), and he is right where he should be (ANC between 750 and 1500). With an ANC of 1000, they don't need to adjust any medication doses, and we don't go back in until August 31st for IV Chemo. His Red Blood Counts and his Hemoglobin were low, but still acceptable.

While Alex's red blood counts were "good", they are a lot lower than say me or Eric. That is to say until this evening, when we both donated blood. Now that I am a pint low, my counts would still be higher than his, and I am WIPED OUT!

We brought the children with us to the blood drive. And it sure felt good to thank people in person for donating blood. Alex watched as they put the needle in Eric's arm, and reassured him that he was doing a great job. I don't know many 4 year old children who could do that.

If you have never given blood, or it has been a while since your last donation, I encourage you to donate. Modern medicine cannot produce blood products to sustain life (although they are trying). The only way that Alex and anyone else who needs a transfusion will get it is through the volunteer donations - one pint at a time. Just one pint can save up to 3 lives. Please click HERE to find a donation location in your area.

Update

I'm sorry I've been so quiet on the blog lately. We have had a crazy few weeks, and it doesn't look like it is going to let up for a while.

We are having much more success with getting Alex to take his oral chemo this time around. While we are still crushing it up and mixing it in mango sorbet, we are experiencing a lot less resistance to the ingestion of such a funky mixture.

Each week, we are "crushing" the pills a little less, with the idea that he will learn to "swallow" the larger pieces. The end goal, of course, is to get him to swallow pills. Some days it would be only one large one. Other days, it is 1 1/2 large pills, 11 1/2 small pills - a total of 13 over the course of the day.

Alex goes back for counts on Monday, to see if they need to adjust the dosage of the Mercaptapurine. His next "chemo" appointment isn't until the 31st of August. At that time, he'll receive more Vincristine through his port, and may or may not receive another LP of Methotrexate into his spine (depending on counts on Monday).

We survived the 5 days of steroids, and now have our son back from the steroid-induced craziness that is now invading this household every 4 weeks for the next 18 months.

Alex is feeling really good right now, and is in great spirits. We take it day by day, and treasure these "good days"!

Officially in Maintenance!

Alex did it - his ANC was 1,300 on Tuesday! We got to start Maintenance. More info later...