Light the Night

http://pages.lightthenight.org/oswim/PortlndL12/warriors4alex

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

http://pages.lightthenight.org/oswim/PortlndL12/warriors4alex

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!!!

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 ...

The Light Is Getting Brighter (Day +127)

We had another great clinic visit today! Alex's counts were where they expected them to be, AND the doctors have contacted surgery to remove his Hickman line! In a few weeks, he will have those pesky tubes removed from his body, and another potential source of infection will be removed from the equation.

The doctors gave us a taper schedule for Alex's Tacrolimus, and said that as soon as the Hickman is out, and he is on the next taper down (starting next week), he can GO BACK TO SCHOOL!!!!

Wow, just wow - this is amazing news. Alex is excited and nervous about re-entry into school, as are his parents. This road has been so tough, and the isolation so hard, that the thought that we may be coming to the end of this treatment is surreal.

We were still on a "high" from the Leukemia and Lymphoma Society "Mini Light the Night Walk" that was so generously put together for Alex the night before (pictures, and a separate post to follow tomorrow). So, this news was just the icing on the cake!

My heart is so full right now - my hope for a full recovery for our amazing warrior has not been this high in quite a while. I see the light at the end of the tunnel, and it is getting brighter!

Great Progress - Day +119

We had a great visit at the clinic today. Alex's results from his bone marrow aspiration and blood draws all show no evidence of leukemic cells, and over 98% donor cells!!!

This is tremendous - it is fantastic! Alex has made it past 100 days without having to be hospitalized. He has made it past day 100 without needing an antibody transfusion. Both of those things are almost a given with transplant patients.

Alex is strong. His energy level is great. He is eating normally. Now, if I can only get him to drink more (ugh).

The doctors are very happy with his progress, and are even talking about taking out his Hickman line in a few weeks! The benefits of having it (easy blood draws and iv hookup), are reducing compared to the risk of leaving it in (point of possible infection). Alex was such a trooper about getting poked in the arm for blood draws after he completed his lymphoma treatment. I know he would do just fine this time too. Plus, the phlebotomists at Doerenbecher are amazing and so quick; they make things as painless as possible.

The doctors are continuing to reduce his Tacrolimus level (the anti-rejection medication), and consequently, we are able to start reducing the number of magnesium horse pills taken each day as well! His Septra (preventative for a specific pneumonia strain) will continue on the weekends until 3 months after we stop the Tacrolimus. The Acyclovir (preventative anti-viral) will continue until one year post tarnasplant.

If Alex tolerates this reduction in his Tacrolimus level and continues on the path he is on right now, he may be able to go back to school in March! He has been doing really well with his tutor here at the house. While I know the transition back to the classroom will be emotionally difficult (shyness); his academic skills will place him on track with his peers.

His hair is really growing back quickly, and any puffiness left from treatment is gone. He continues to grow taller by the minute, and I am just stunned that we will be celebrating his seventh birthday in April.

I know Alex is going to make a full recovery, and with few long term side effects. He is an amazing Warrior, and I am so proud of him!