Thursday, October 18, 2012

Light the Night

Alex was only three and a half years old when we were blindsided by the terrible news that he had Lymphoma. We battled the beast for two years with intensive Chemotherapy. We watched as our boy swelled with steroids, and withered with chemo. His hair fell out, and there were days he was in too much pain to walk. He learned the names of all his medicines, and could pronounce them better than we could. We believed our nightmare had ended in November of 2010, when we watched Alex take his last dose of chemo.

In April 2011, we celebrated Alex's sixth birthday at a waterpark, with many friends and family. I tried to tell myself that the night sweats and bruising I saw on his young body were just evidence of a great time at the waterpark. One week later we were in the hospital emergency room learning that Alex had cancer again. At first we were told it was a relapse of his original cancer. Two days later, we learned that the Chemotherapy he received during treatment caused a genetic mutation, and he had a completely different cancer. The CURE for his Lymphoma CAUSED his LEUKEMIA.

Now, as a very high-risk Leukemia patient, our only option was a bone marrow transplant. The search began for a match, and one was found on the other side of the planet. While we waited for all the pieces to fall into place, we began a chemo regimen, to hold the Leukemia at bay. In September, while his friends were getting on the school bus, Alex was wheeled down to the radiation room for "conditioning". No parent should ever have to watch as their child is tied down, placed in front of a massive radiation machine, and then separated by a two foot thick lead and concrete door. We watched through a grainy video feed, as our now six year old sat perfectly still, watching a Scooby Doo video on a tv with strange colors and distortions from the massive doses of radiation. We watched as Alex was poisoned with radiation to kill his immune system and be ready to accept the donor marrow.

Radiation sickness followed, with mouth sores, burned skin, vomiting and exhaustion. Alex's donor marrow was flown across the world, and within 24 hours of harvesting, we watched as the marrow dripped from the IV bag into his veins.

The road to recovery was long and hard, but we are now one year post transplant, and Alex shows no evidence of disease, and is back in school, catching up with his peers. He is leading a "normal" seven-year-old boy life.  We are profoundly grateful for the research that has helped our son battle cancer - TWICE. However, until the cure cannot cause the disease, we have much more work to do.

Please consider donating to our Leukemia and Lymphoma Society's Light the Night team: Warriors 4 Alex.

The cure isn't good enough - we must do better for our children, and other loved ones battling this horrid disease. Please donate TODAY

Thursday, September 27, 2012

100% DONE

CD3+: All cells (100%) had 2 X signals, reflecting the donor sex
chromosome complement.

CD33+: All cells (100%) had 2 X signals, reflecting the donor sex
chromosome complement.

This means Alex has 100% donor cells - it confirms that we are DONE, DONE, DONE!!!

Friday, September 21, 2012

One Year Later

Lymphoma: Done

Chemo: Done

Leukemia: Done

Chemo 2.0: Done

Radiation: Done

Bone Marrow Transplant: Done

Anti-Rejection Medications: Done

Antibiotics: Done

Antivirals: Done

One Year Post Transplant Bone Marrow Aspiration: Done


I always asked myself, when I would end this blog - I just stopped writing a while ago, and just couldn't bring myself to write about how I was feeling.

I also had this irrational superstition that I would "jinx" his recovery if I wrote about how incredible his recovery has been.

We are now one year post-transplant. Today, Alex had a ton of blood drawn for the myriad of tests they do on this anniversary clinic visit. They check the thyroid, his hormones, his blood counts, his antibodies, his cholesterol, his genetic markers, you name it, they test it.

We will know the results in about a week. I will update with results as soon as I can. I hope to be viewing the monitor through tears of joy.

This has been such a long road - it is hard to think that it has been almost 4 years since this nightmare started. It is hard to believe that Alex is just a "normal" kid now.

We will still visit the clinic four times a year (every three months), and he will get an echo-cardiogram once a year. Alex is also being referred for a full neuro-psych test to get a base line of his cognitive skills, which will be very useful as we discover the full long-term effects of his treatment.

While we are DONE with cancer, I am not ready to close up the blog - I will update from time to time, as this story isn't really ever over, is it?

Friday, April 13, 2012

C-Diff Positive (Day +213)

Hip, Hip, Hooray!

Alex is C-Diff Positive

Wait, I thought C-Diff was a bad thing?
Why are you so happy about a bacterial infection in his colon?

I am happy, because the reason for his "intestinal trouble" is NOT due to GVHD, and after a 10 day course of antibiotics, he should be just fine.

If the issue had been GVHD (Graft Vs. Host Disease) related, the doctors would have ordered a "scope" of his digestive tract, and he would have been put on steroids, and possibly immune-suppressants again.

So, hip hip hooray - Alex has something that can be treated without backsliding on his treatment.

All is good today! Happy Friday the 13th to all of you!

Wednesday, April 11, 2012

100% (Day +211)

In school, we know that most often, a grade of an "A" is bestowed on those with a score of 90-98%. And an A+ is usually reserved for those achieving over 99%.

I am SO happy to report that Alex has a *perfect* A+ score of 100% Chimerism! Which means, he has 100% donor cells!

He is still having some intestinal issues, so the doctors want to do a few tests to rule out a "stomach bug" before looking at possibly restarting some steroids, to reduce any GVHD that might be the culprit.

We are hoping for a stomach bug, and that Alex's body continues to "regenerate" into a healthy boy!