Haley’s Giggle

This past round of check-ups at Sloan Kettering were quite positive: 1% in height, and 2% in weight. Haley’s just on the growth chart, but it still counts, which means no need to contemplate a feeding tube again.  Her bloodwork is stellarly normal, with a bit but only a bit more help with her Vitamin D levels (her levels have always low– the Tacrolimus she was on to prevent her bone marrow from being rejected gave her a higher risk of skin cancer, so we kept her out of the sun most of these past few years).  Her EEG was also particularly strong.  Haley still has many issues since her bone marrow transplant– allergies, constant diarrhea, and inturning of her toes and feet making it hard to walk, jump, run and balance.  And her latest symptom– burning sensation in her fingertips– has made us realize that though she is cured, she’s still a ways to go.  Her path out of old conditions is still unclear, and the new latent complications from the chemo regimen she was on — a phenomenon called “late effects”– make that path even more uncertain. We’re working hard to tackle these things as they come, amassing an impressive entourage of specialists including a neurologist, dermatologist, and endocrinologist.  As the parent, you feel like you’ve been on a marathon, and when you reach 26.2 miles, you then only find out that the end isn’t there, but rather 100 miles further down. It’s a daunting because there’s less familiarity with the complications– every kid responds differently to the chemo and other drugs and it’s impossible even if two kids had the same exact regimen, how they will do.

We’d like to all resume our daily normal lives, but we’re realizing finally that such is not the plan for us, not yet anyway.

Today was the 4th anniversary of Haley’s bone marrow transplant. It’s amazing to look at her and think not only that this happened four years ago, but how far she’s come.  She’s writing and typing out words on the computer; she’s learning to swim; she’s twirling albeit on toes she cannot feel.  She has the will of the world, but we already knew that.

To honor the now known donor, Hiltrud, and her generosity to Haley and to our entirely family, we celebrated the “Day of Giving” for the 4th year in a row. The first year was to support Uncle Pretty in his inaugural head-shaving event to raise money for cancer-stricken kids. The second year was donating things to animal shelters, the salvation army, and other charities. Last year, Haley’s class (along with Anna) made a mural for the Hem/Onc clinic at DC Childrens. This year, we focussed on the doctors, nurses, therapists, and babysitters that helped over the years. On the theme of painting, which both Haley and Anna are into these days, we bought 20- 8×8 canvases, and taped them together to make one giant singular canvas. Anna and Haley then took opposite sides, and made a painting, entitled, “Night of Hope.” We took a picture of it,

then divided up the painting, to give all of the doctors, nurses, therapists, and caregivers that have helped Anna and Haley along these challenging but triumphant years.  We hope if you’re reading this, you do something for someone else and keep this “Day of Giving” in mind and do in honor of Haley’s donor, Hiltrud (who also got a canvas).

So many people called and emailed and texted. Thank you all so much- we have the best family and friends in the world.

After four years of anticipation, we have finally heard from Haley’s donor. Her name is Hiltrud Schulze Icking, a 42 year-old woman from a farm in Northern Germany.  We first learned of her identity last April but waited to hear back from her first to make sure it was a legit connection. Over the holidays, we received a letter and a card from her (in German, which had to then be translated in English). From the moment we found out about a bone marrow match for Haley in the fall of 2006, the identity of the donor was a mystery. The way it worked was that, for security reasons, it’s a double blind donation: they don’t know who we are and we don’t know who they are.  At her one year anniversary, we inquired about the identity but was told that the information remains in anonymity at least another year, which meant that Haley’s donor was located somewhere in Europe (that’s their policy).  Last year, at the two-year transplant mark, we inquired again, but were refused. We were told that in a few rare instances, the donor wishes to remain anonymous.  So, through Sloan, we would send updates (leaving specific information out so as to honor the anonymity clause). This time, at the 3rd year transplant mark, we sent the donor another letter, as we had the previous two anniversaries and a few other occasions in between. We also sent her a picture that Haley had made. Maybe it was the picture, maybe it was the update. But whatever it was, after 3 and half years, the donor is finally revealed.

The name “Hiltrud” is a name like “Minerva,” or “Minnie,” one that has run its luck. No one of our generation bears that name.  I looked it up. “Hiltrud” means”strength,” which is the same meaning as one of Haley’s names, “Gavriella” (Hebrew female version of the name Gabriel).  It gives the blessing, “may you go from strength to strength” very personal meaning. next step: to write to Hiltrud to find out what she likes to eat…