October 10

Twenty-nine years ago today, I went to the hospital to give birth to my firstborn.  A son.  Joshua Bryan Darwin.  It was 2:07am on that Sunday morning when I first heard his cry, saw his face, held him close.  That was a day to celebrate a new life.

Today, October 10, 2011, I went to another hospital for another reason.  It was my initial visit to MD Anderson, THE world-renowned cancer center.   This day was about new life as well.

Weighing in at 7 lbs. 8 oz. was fairly common back then when 9-10 lb babies were considered big.  Now that I’ve had two grandsons who weighed in at 11 lbs. 2 oz. at birth, I’d say that babies seem to be getting bigger.

Today was a full day.  New patient registration, lab work (16 vials of blood!), first meeting with Dr. Shah (transplant doctor), transplant coordinator visit, meeting with business services, patient/family orientation, and ending with an echocardiogram.  Tomorrow we go back for the pulmonary function test, intro to transplant class, a visit to The Learning Center, and my second bone marrow biopsy…with less Lidocaine than before.

We were all about natural childbirth and succeeded to see Joshua into the world without any medication.  We were home within hours and started our lives as parents without any written instructions.  Babies come that way, you know.   You just pray everyday, find trusted mentors who have raised good kids, and follow a combination of your heart, your own good sense, and the wisdom of those who have gone before.

At MD Anderson, as well as through our own research, we have gotten tons of written information about protocol, procedures, insurance, and recommended courses of action.  We were given phone numbers and websites where we can contact mentors who have walked the walk before us and are willing to now walk the walk along side of us.  We have the wisdom and experience of doctors who have researched and spent their lives understanding and treating cancer.  But they’re not yet quite sure what to do with me.

Joshua was an unusually good child.  He loved books.  He spent hours building with Tinkertoys and Legos.  His blanket/cape made him Superman.  And he was a budding artist by the time he was three.  He didn’t get into much trouble.  All I had to do was raise an eyebrow to reign in any questionable behavior.   But even with an easy tempered child, there is so much responsibility as a parent to always be teaching and guiding them in the ways they should go.

The path for a healthy 50 year old with CLL and 17p deletion is neither clear nor common.  The few things that we learned for sure today were, first, they are only going to test my brother as a bone marrow match.  If he is not a match, then they will proceed to the national registry.  All who have so kindly volunteered to be tested can contribute to the cause by registering at www.bethematch.org.   Second, we learned that because of insurance regulations, I would first go through chemo to see if it results in remission.  If it doesn’t, which is likely because of the 17p, I will be eligible for the transplant.  Or if the chemo works for a while and then doesn’t any more (which is called refractory), I would also be eligible.  This is the current “protocol.”  We are going to meet with the head CLL doctor to see if there is any new protocol for people in my situation and age group.

Raising a child is a new experience everyday.  They learn new sights, sounds, actions, and words.  They grow from completely dependent little creatures to increasingly independent adults.   What a reward to see your son grow into a man.

We have concluded one thing in our CLL journey so far.  Every day is new.  We never quite know what to expect.  Some days we just have to be patient.  Some days are encouraging.  Other days are not.  We don’t know what this is going to look like as it grows.  But we know that we are responsible for each day’s decisions.  So we pray, we follow our hearts, our own good sense, and surround ourselves with the wisdom of those who have gone before.

Happy Birthday, Joshua.  I plan on being here for a whole lot more.

I love you!