My Hero...

September 6th came and went very quietly around here...it was the one year anniversary of when we found out Connor has neuroblastoma and OMS. Sam and I couldn't help but reflect on the painful memories each time we looked at the clock and thought back to that exact moment of time a year ago and what we were doing.

All the questions and all the unknowns we had that day! More than I could even type if I wanted to, and fear like I have never felt before. Long days of testing followed, along with surgery on the 26th, and as we moved into October-the weight on our hearts lifted tremendously when we knew exactly what we were dealing with...good news that our Connor has Stage I NB, devastating news that he is one of the "lucky" ones with the extremely rare side effect of neuroblastoma called Opsoclonus Myoclonus Syndrome (OMS) Something so rare, most doctors have never even heard of it, and so rare that only a few doctors in the whole world treat it...not something you want to hear when it comes to your baby son.

We have come a long way in these 365 days since our battle began against this relentless cancer, and in our case, even more unrelenting autoimmune disease that has robbed our baby of a normal childhood and possibly a normal adulthood. We have had to face the fact that our perfect little boy, is not going to have an easy road ahead of him (we still struggle with this daily) and although he is perfect in our eyes-he is not seen that way by others. Already at his tender age of 2 yrs. 4 months we get the looks of pity, confusion, and the questions about WHY he doesn't do this, or know that, etc...this is bound to increase as he gets older and is so drastically different from his peers, in his cognitive ability, and lack of speech. This is where me and Sam draw strength from each other, and we try and boost each others spirits on days when one of us feels particularly down about Connor's health.

And if we have a VERY bad day-then all we have to do is look at our sweet Connor and he gives us all the encouragemnt we need to keep fighting for him and getting him the support he needs to improve. So we continue the assault on his tiny body with powerful drugs to fight off the attacks on his brain-and try to keep him sheltered from germs, that might cause a relapse of all his OMS symptoms.

A special package came in the mail on the one year mark of this journey...a box filled with "Hero Beads" to be strung on a string to demonstrate all our baby has been through in the last year. Each bead represents a test, a treatment, etc... and comes with a legend to show you the meaning behind each bead. I had ordered it for Connor to be a momento for when he is older-not knowing how moved I would be to see all the beads strung together with his name in the center-14 rounds of chemo, 15 IVIG infusions, 8 sedations, 2 hospital stays, nuclear medicine scans, MRI's, surgery, blood draws, finger pokes, x-rays. Fitting name-because Connor is our hero.

It hurts to think of all the "tests to come" he will have to endure to earn more beads...I never forget through all this heartache, how blessed we are that he was spared from the worst this cancer has to give-and with it I suppose we have a small amount of "surviviors guilt" that keeps me focused on the journeys of so many other children fighting NB. Our son has his own scars from his battle and a future not quite as bright as we had hoped and dreamed of-but a FUTURE none the less, something we never take for granted in the midst of all the death and sadness in the NB world.
We pray for the OMS families and NB families daily, and pray to God to watch over Connor and help him along his path...

Thanks for checking on us, and for the love & prayers-
Debbie