Worries

With less than 24 days to go, you would think I would be over-joyed at the thought of finishing Chemo. I should be - however, it turns out I most likely am suffering from some variation of Post Traumatic Stress over this ordeal, so all logic goes out the window...

Anyhow, it's Friday night, all the doctors and clinics are closed, and both of my lovely children are in bed. I sat down to read a friends blog, only to find that one of the drugs injected into Alex's spine - INTO HIS BRAIN has been recalled for GLASS SHARDS in the solution.

Yes, I have the lot numbers, but that won't do me a bit of good between now and Monday morning, when EVERY parent of a Leukemia or Lymphoma patient will be calling the hospital to see if GLASS SHARDS were injected into their child's BRAIN. Even if we find that one of the vials in the recalled lots was used - what can we do? Just hope it doesn't lodge itself into his spinal column, and irritate the lining, causing motor problems - or worse? What would a glass shard do to blood vessels in the brain?!?! It's not like you can just change the fluid like at Jiffy Lube. Once it is in there, it's in there for good.

Here are a few links about the recall:

FDA: Methotrexate Recall

Sandoz Initiates Voluntary Recall

We go to the clinic on Wednesday to get check his blood counts. It may take that long to find out whether any of Alex's back pokes used this tainted Chemo.

If cancer wasn't enough to worry about...

I'm going to bed.

28 Days 11 hours

In 28 days and 11 hours, I will give Alex his very last dose of Chemo - his very last steroid pill.

We are exhausted - and so is he.

A Post I Hope Never To Write

I have written about Gage on here before. He is a 9 year old who has been battling cancer for six years.

While our blog has a countdown to Alex's last Chemo dose, that counter has now taken on new meaning for me.

By the time Alex finishes Chemo, Gage's life will be finished as well - his body cannot continue to fight. The cancer has spread, and there is nothing left to do.

His parents pain is so raw in their most recent journal entry. All we can do is hope for Gage to suffer as little as possible.

http://www.caringbridge.org/visit/gage

Cancer Sucks.

The End Is Near

7:30 am

"Sara...hello...where is everyone?"

"Snort...huh...oh, NO!"

...and thus we started our day, woken out of a dead sleep by my Mom, who came to watch Tessa while I took Alex to his 8:30am appointment.

I jumped out of bed, got some breakfast in the kids, and Alex and I headed up the hill to get his monthly dose of poison injected into his veins.

Alex has had a cough, and had been so tired the last few days, that I wasn't sure what to expect with his counts. They came in at 3,400 - WAY too high again. So, our doctor notched Alex's Mercaptapurine dose up, and started to talk to us about end-of-treatment.

Before we could begin, I wanted to bring up an issue that was really concerning me and Eric. Alex had developed what seemed like classic teenage acne all over his cheeks. We also were noticing quite a stench in his bedroom (teenage boy stench). I did some research on the issue, and discovered that precocious puberty is a possibility for children treated for cancer at such a young age. Precocious puberty means that his body hits puberty MUCH too early, and can stunt growth, and can have other complications.

Now, don't everyone freak out on me here. He didn't have radiation to the brain, so this could just be that Alex is a stinky kid, who needs to shower every single day... (smile)

The doctor examined Alex and ordered some additional blood tests to check for abnormal hormone levels. We should have the results in a few days. If he does have this, well, it will be a breeze compared to cancer. He would just be on hormone suppressing medicine, until it was the "normal" time for him to hit puberty.

So, back to end-of-treatment issues. Alex will have his final dose of Vincristine on 11/17/2010. His final pill will be a steroid pill on 11/23/2010. I guess we go out with a BANG! He will get his Port out soon after, but will continue to have blood draws once a month for the next 12 months. Then, it will go to once every 3 months, then every 6 months, then every year.

For the rest of his life.

In three months, we will stop the doses of Septra each weekend. In six months, his body should be fully recovered from the Chemo, and we can "catch him up" on his immunizations.

This was an aggressive cancer, and if it was to come back, it most likely would be "relatively quickly" (whatever that means). What they DO know is that they DON'T know if it will return. We hope he will be one of the 80-90% who are cured for good. Every month that he has a clean bill of health, we will be one month closer to "cured". I asked "when can we start using that 'c' word, you know, 'cured'?" Our doctor wasn't sure if it was 5 years from diagnosis, or 5 years from end of treatment. She was going to get back to me with the answer. I'll let you all know.

Either way, the end of active cancer treatment is approaching quickly. The ripples from his treatment will continue on for years...

I guess we truly never will be done with cancer.

I just want cancer to be done with Alex.

PS - to read more about precocious puberty, click HERE.

Light the Night and the End of Treatment

Wow.

Just Wow.

Over 50 people walked with us in honor of Alex. Over 50 people held red balloons to signify their support of our amazing little man. Thank you, does not begin to do justice to the gratitude I feel for all our Warriors 4 Alex - both here and afar.

I am humbled by the generosity of the people who donated their time, and their money to help us support the science that is so desperately looking for a cure for this vile disease. Our team has raised over $9,300 to date, and we hope to break the $10,000 mark before January 31, 2011.

As you may have already read in my previous post, we are on the countdown to the end of treatment for Alex. Our final Chemo day is scheduled for November 19th, 2010. Exactly two years and nine days after diagnosis. Those first few days are still so raw. I tear up thinking about them (even while on Prozac). Our little boy has been so strong, and has grown so much in spite of the intensive treatment, and disruption to his life.

Cancer has been the most horrific thing I have ever dealt with. I'm sure Eric would say the same. Even so, to be perfectly honest, the Chemo and doctor appointments have become the norm, and the idea of stopping cold-turkey on November 19th scares me to death.

These next 36 days are going to be challenging. While I hate the poison that is pumped into our son, there is comfort in knowing that we are actively fighting the cancer. We are waging war daily, with hopes that the cancer cannot gain critical ground. Once we sign the peace treaty with his body, and halt all warfare, who is to say that cancer will not begin an all-out assault once our guard is down?

I can tell you that every time Alex has a swollen lymph node, I will not sleep until cancer is ruled out. I will be THAT mom, pestering the doctors for a CT scan "just to be sure". Every breath will be held until the routine blood test results are returned.

Every time.

For the rest of my life.

And I am SO grateful for the opportunity to worry. It means my son is alive. It means treatment worked. It means I have a son who I can hold, talk to, hug, and watch grow into the fantastic young man I know he will be. It means that my daughter will have a big brother to grow up with.

Not every parent is that lucky. For every ten parents sitting in the waiting room up at the hospital, two of them will have their hearts torn open as they watch their children succumb to a blood cancer. They will sit there, watching as my son gets better, while their child fades in front of their very eyes.

We need a cure.

Please click the link on the right side of this blog, and donate $5 or $10 to the Leukemia & Lymphoma Society. Help us fund research that will someday make blood cancers 100% curable.

Good News

November 19, 2010 will be Alex's last day of Chemo - more info to come - hip hip hooray!!!!