Lucas Chronicles: First day of Clinic visits

Trying to walk.

Ready for Spinal Tap this morning.

This post is being written tonight with a fresh stream of tears rolling down my face.  Today started a series of chemotherapy clinic visits at Lurie Children's Hospital.  We arrived at 630 this morning (for an 8am appt) to sign in get to the OR floor and get prepped.  Lucas required a spinal tap today along with a dose of methotrexate chemo in the spine.  This will ensure that the leukemic cells DON'T make it to the spinal cord or central nervous system.  After that procedure we went the out patient clinic where I had to go to the cafeteria (twice) to get Lucas some cheese, as this is his only consolation food.  They did the usual blood work ups and then the oncologist and the APN came in for a visit.

Our oncologist explained today that Lucas has the Philadelphia Chromosome, see also Legacy of Philadelphia Chromosome.  Simply put the chromosome allows the leukemia cell to grow out of control.  For adults with CML this is a major hurdle.  For children like Lucas, this takes him from standard risk to high risk.  Creating a change in the "road map" for treatment along with adding a new drug called dasatinib.  This medication costs $5,000 a month and is not currently covered by our insurance.  Fear not, thanks to amazing humans at Walgreen's and Lurie's, we will not have to pay for this medicine.  If our insurance denies payment, Walgreen's and/or Lurie's will pick up the tab.  At that price, I almost had a heart attack when we picked up the prescription.  Also, it better kick the shit out of Philadelphia and his damn chromosome!!

Lucas' chemo treatment today consisted of Vincristine, Daunorubicin which is the new chemo because of the discovery of the chromosome.  Along with the methotrexate from earlier.  Lucas has also been given Decadron, Zantac and Zofran for nausea.  He will continue to receive chemo weekly until the end of the month.

The SILVER LINING for the day:

Lucas' hemoglobin are up to 10.5 from 8.9 when we left the hospital.  Non medically that means that his little body has managed to increase the red blood cells  in 4 days with chemo, steroids and other junk in his body without the assistance of a recent transfusion.

He smiles regularly throughout the day.

He plays with Rina, Franco and me.

He is eating, sleeping, pooping, peeing, drinking and talking.

He is alive and getting better slowly.

I was asked today how I manage to stay positive and strong through all of this.  My answer, I don't have any other choice.  When I became a dad, I committed to take care of my son. NO MATTER WHAT.  He needs me more than anything right now.  He needs to know we are protecting him and helping to make him better.  My wife and children needs me and it is my duty to be their rock.  Their foundation.

What actually drives me?  I look in Lucas' eyes every morning and every night and tell him I love him, NO MATTER WHAT.  And when he smiles, it gives me fuel and energy to keep going.  I know Lucas has a long road ahead of him, but I will be there, every step of the way to pave, patch, repair and plow that road to his health and continued improvement.

Thanks for reading, it means alot to us.  Keep Lucas in your prayers.