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

Cancer: DONE DONE 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?

C-Diff Positive (Day +213)

Hip, Hip, Hooray!

Alex is C-Diff Positive

What?
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!

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!

The New, New, New, New Normal (Day +197)

Normal = Life before cancer
New Normal = Life fighting T-Cell Lymphoma
New, New Normal = Life after Lymphoma
New, New, New Normal = Life fighting B-Cell Leukemia
New, New, New, New Normal = Our life now ... beyond cancer!

I know that posts have been few and far between. I guess our new x 4 normal (n4normal), is taking up all our time, as we find our balance.

Alex is now in school full days, with only a few adjustment issues. Once in a while, he will have an anxiety attack, but we are having more and more regular days. We had his first teacher conference, and were very pleased with his progress. He is learning so much, and we haven't seen any signs of possible cognitive issues, although, they could show up much later, so we will keep watching for anything.

We also made it through our first head cold with Alex. He got a fever, and were relieved when the on-call doctor told us to just give him Tylenol. No emergency room visit, no IV's, no overnight stays in the hospital. What has been truly amazing, is that Alex got over the fever, and cold faster than any of us. As one of his doctors say, he has a very robust immune system!

Alex only takes two medications now. The Acyclovir twice a day(anti-viral), and Septra twice a day on the weekends. Both of those medications are due to stop in September. He doesn't have any rashes, and only a bit of gastro-intestinal issues, which could just be from recovering from this cold. He looks so good, and you would never know he had been so sick, unless you saw 5 *war wound* scars that slash across his body.

We just had another clinic visit today. We are on a two-week schedule, soon to be once a month. His counts are perfect, and his blood work is beautiful. The whole clinic is just so pleased with his results. As are we.

This has been such a long road. It is hard sometimes to realize that we are at the end of treatment, and are moving into survivorship. Alex is amazing - and I can't wait to see what he will be when he grows up. But, for now, I am glad he just gets to be a kid.

I Can See Clearly Now ... (Day +142)

... the rain is gone.
I can see all obstacles in my way.
Gone are the dark clouds that had me blind
It's gonna be a bright, bright, bright sun shiny day ...

That is the song that has been running through my head for two days now. At Alex's last clinic appointment, the doctors released him from his low bacteria diet, confirmed his appointment to remove his Hickman line, and approved February 13th as Alex's first day back at school!

We went out to dinner to celebrate, and Alex's request? Sweet Tomatoes (a salad bar restaurant). While I must say, that my "germ radar" was on high alert, we made it through dinner, and really enjoyed ourselves! It may seem like such a small thing to most, but for Alex to have drinks from a fountain dispenser, and soft-serve ice cream is huge.

This news all hit exactly 9 months from the date of Alex's diagnosis of B-cell Leukemia. Since then, we have been to hell and back. I am just in awe that this stage is just about over, that life CAN go on.

I cannot give enough credit to Alex's team of doctors and researchers for working aggressively to kill this second cancer

I also send my heart-felt and most sincere thanks to the woman who donated her marrow so that Alex could have a chance to be the amazing man I know he will be! I hope to meet this amazing lady someday, although, how do you properly say "thank you" for saving Alex's life?

It is very fitting, that the sun is shinning in the middle of winter in the Northwest today.

Look all around, there is nothing but blue skies.
Look straight ahead there's nothing but blue skies ...