Artwork © Shulamit Elson

After the phone call from NIH we immediately contacted our doctor. 

Dr La Di Dah was off on rounds and didn’t answer our urgent calls. When finally we tracked her down she was her relaxed self.  What’s all the excitement?

So we had to fight to get her attention so that she could take the matter more seriously.

With my preconceived notions of the behavior of HMOs and health insurance companies when it comes to spending money, my worst fears and anxieties surfaced.

And although within a few days the matter was settled, it was initially a  scary experience, attributable exclusively to this one doctor, whose calm was misplaced.  And my fear was unneccesarily heightened by what I expected to happen, based on all I had read over the years.  

In other words I suffered more than I needed to because I expected the worst.

This experience taught me to approach situations with a more open mind, and not assume the most pessimistic stance, because of assumptions, no matter how informed I think I am.

We reconfirmed with NIH that the situation was indeed dire and we hadn’t misunderstood.  We presented our needs once again. She hadn’t even read the report yet; She was unrushed and disengaged.  We tried to change doctors, but it couldn’t be done quickly — the bureaucracy required going through a process before any switch could be made. 

And meanwhile there was fear.

It was only after my son-in-law informed Dr. La Di Dah “ oh, by the way I am a lawyer”  that she began to take the situation more seriously, and ordered immediate treatment.

Was she this disengaged because of her own fear of facing or giving bad news?

In what seemed like an eternity but was only a few days, we got transferred to a more responsive and compassionate doctor.  After we left Dr. La Di Dah and from that day forward, we were treated with sensitivity, caring and urgency that the situation required.

My daughter began a chemo treatment called Vidaza. Vidaza does not cure, it postpones the inevitable,  while it prepares the patient for a bone marrow transplant;  The transplant is successful only insofar as the patient is in good shape going in, with their dangerous cells nearly extinguished.

Vidaza is given on an outpatient basis by a port, or by 7 days every day injection in the stomach and then 3 weeks off. The treatment continues for 6 months, followed by a biopsy a brief break and then resumes again. After  several months, usually a year to 18 months, the MDS cells figure out that they are being tricked, and the Vidaza no longer has an effect.

No matter what, you always have to be prepared to fight.

Vidaza was started, and it was indeed awful, but at the end of 6 months it produced the desired effect —a temporary remission. She was feeling chipper enough to take a pause in this punishing treatment.

 Joy emerged after so many months of treatment.

Treatment aside, I am still waiting for a miracle.

After a pause in the treatment, and feeling quite well, one night she awakened and knew she was very ill. A biopsy seconded what her body knew:  Leukemia.

No time to waste.

Before Christmas 2017 she entered the hospital for 3 weeks of induction chemo. Induction chemo is so strong it can’t be delivered as an outpatient—you need at least 3 weeks as an in-patient. The goal is to ready the patient immediately for transplant.

This is no dream.  

Once in the hospital Doctors refuse to give any good news. Even worse, they look sad themselves,  pinned squirming in a very uncomfortable corner, unable or unwilling to provide the encouragement you long for.

This is where faith and trust come in.